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Teaching Children and Adults with Rare Diseases

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February 29th is the official day of bringing awareness to rare diseases. According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease vary from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Facts You Should Know About Rare Diseases

  • There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world
  • Each rare disease may only affect a handful of people but taken together directly affected is equivalent to the population of the world’s third largest country.
  • rare diseases currently affect 3.5%-5.9% of the worldwide population.
  • 72% of rare diseases are genetic while others are the result of infections.(bacterial or viral).
  • 70% of those genetic diseases start in childhood
  • About 30 million people or 1 in 10 people in the United States are affected by a rare disease
  • 95% of rare diseases do not have FDA-approval treatment.

Most children diagnosed with rare diseases are more than likely to also exhibit some form of learning disabilities including intellectual disabilities, developmental delays, speech and motor issues. Also, you may find in addition to an intellectual disabilities, students may also have medical issues including epilepsy and ongoing medical concerns.

While it is impossible to know and remember all of the signs and symptoms of rare diseases, the key is to teaching students based on their level of development. The following are useful teaching strategies when teaching students diagnosed with a rare disease:

  1. Teaching should include using multisensory teaching strategies by engaging students on multiple levels by encouraging students to use their senses. This is done by utilizing learning that includes visual (text, pictures, flash cards), auditory (music, songs),tactile (textured items, clay), kinesthetic (games, movement activities), taste ( cooking activities).
  2. Use concrete items and give examples
  3. Use hands on material as much as possible
  4. Break longer, new task into smaller task. Use task analysis.
  5. In some instances, children may have tactile and sensory issues.Signs include over and under reacting to pain, avoiding messy textures, picky eaters, and reacting to loud and sudden noises. Strategies include using a sensory diet and create activities using play doh or silly putty.

The following are articles and links to further information on rare diseases found in this blog:

Aicardi Syndrome– A rare genetic disorder that occurs in 1 in 105,000 to 167,000 newborns in the United states and occurs exclusively in females. People with Aicardi Syndrome often have undeveloped tissue which connects the left and right halves of the brain.

Angelman Syndrome– A genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities and speech impairments.

Chromosome 22q11.2 (DiGeorge Syndrome)- a rare disorder that is caused by deletion in chromosome 22 located specifically in the middle of the chromosome in the area. It affects 1 out of 4,000 births. Symptoms include developmental delays, poor muscle tone, learning development and feeding issues.

Cri Du Chat– A rare genetic disorder that results when a piece of the 5p Chromosome is deleted. Characteristics include intellectual disability, hyperactivity, and developmental delay.

Dravet Syndrome– A rare form of epilepsy found in children. Symptoms include developmental delays, sleeping conditions, and chronic infections.

Duchenne Muscular– Occurs in 1 out of 3,600 male infants and is characterized by progressive muscle degeneration. early signs include muscle weakness in the hips, pelvic area, thighs and shoulder affecting delayed motor skills, sitting and walking.

Landau Kleffner– Characterized by the gradual or sudden loss of language in children between the ages of 5 and 7.

Lowe Syndrome– Is a rare genetic disorder that affects the eyes, brain and kidneys. It has a prevalence of 1 in 500,000 and mainly affects males.

Prader Willi– A genetic disorder resulting from an abnormality of chromosome 15. It is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

Rett Syndrome– A neurodevelopmental disorder occurring mostly in females in which the child exhibits reduce muscle tone, and autistic-like behaviors including hand movements consisting of wringing and waving. It is a rare disorder that affects about 1 out of 10,000 children.

Williams Syndrome– A rare disorder with a prevalence of 1 in 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Signs and symptoms include moderate intellectual disabilities and learning disabilities.

Updated 2/27/24. 

Rare Disease Day

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Date: February 29, 2024

February 29th is the official day of bringing awareness to rare diseases. According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease vary from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Since 2008, Rare Disease Day has raised awareness and bringing attention to the 300 million people worldwide living with the disease. Rare Disease Day is observed every year on February 28 (or 29 in leap years).

Facts You Should Know About Rare Diseases

  • There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world.
  • About half of them are children.
  • Each rare disease may only affect a handful of people but taken together directly affected is equivalent to the population of the world’s third largest country.
  • rare diseases currently affect 3.5%-5.9% of the worldwide population.
  • 72% of rare diseases are genetic while others are the result of infections.(bacterial or viral).
  • 70% of those genetic diseases start in childhood
  • About 30 million people or 1 in 10 people in the United States are affected by a rare disease
  • 95% of rare diseases do not have FDA-approval treatment

Type of Rare Diseases:

Aicardi Syndrome– A rare genetic disorder that occurs in 1 in 105,000 to 167,000 newborns in the United States and occurs exclusively in females. People with Aicardi Syndrome often have undeveloped tissue which connects the left and right halves of the brain.

Angelman Syndrome– A genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities and speech impairments.

Chromosome 22q11.2 (DiGeorge Syndrome)- a rare disorder that is caused by deletion in chromosome 22 located specifically in the middle of the chromosome in the area. It affects 1 out of 4,000 births. Symptoms include developmental delays, poor muscle tone, learning development and feeding issues.

Cri Du Chat– A rare genetic disorder that results when a piece of the 5p Chromosome is deleted. Characteristics include intellectual disability, hyperactivity, and developmental delay.

Dravet Syndrome– A rare form of epilepsy found in children. Symptoms include developmental delays, sleeping conditions, and chronic infections.

Duchenne Muscular– Occurs in 1 out of 3,600 male infants and is characterized by progressive muscle degeneration. early signs include muscle weakness in the hips, pelvic area, thighs and shoulder affecting delayed motor skills, sitting and walking.

Landau Kleffner– Characterized by the gradual or sudden loss of language in children between the ages of 5 and 7.

Lowe Syndrome– Is a rare genetic disorder that affects the eyes, brain and kidneys. It has a prevalence of 1 in 500,000 and mainly affects males.

Prader Willi– A genetic disorder resulting from an abnormality of chromosome 15. It is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

Rett Syndrome– A neurodevelopmental disorder occurring mostly in females in which the child exhibits reduce muscle tone, and autistic-like behaviors including hand movements consisting of wringing and waving. It is a rare disorder that affects about 1 out of 10,000 children.

Williams Syndrome– A rare disorder with a prevalence of 1 in 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Signs and symptoms include moderate intellectual disabilities and learning disabilities.

Updated 2/29/24

 

What is an ISP?

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People with disabilities that are eligible for community habilitation, day habilitation, supportive employment and support services will receive an Individual Service Plan (ISP).
What is an ISP?

An Individual Support Plan (ISP) is an ongoing process of establishing goals for individuals and identifies supports and strategies that reflect the person’s strength and abilities and details all of the services and supports needed in order to keep the person in their community. The ISP should reflect an opportunity for the person to live in the least restrictive home setting and to have the opportunity to engage in activities and styles of living which encourage and maintain the integration of the individual in the community through individualized social and physical environments.

Who should be included in the development of the ISP?
  • The person receiving services.
  • family members, caregiver, or designated representative
The ISP Planning Process

The ISP should be developed with participation from the following people:

  • The individual
  • Members of the individual’s family
  • A guardian, if any
  • The individual’s Service Coordinator
When is an ISP meeting held?

The meeting is held when it is desired or needed. Some State require meetings every 6 months while others every 2 years, so check with your state regulations.

What is discussed at ISP meetings?

The meeting should focus on 5 areas:

  • Review and gathering information including any new changes or discoveries. Has the person’s health status changed?
  • The person’s goals and desires
  • Review or identify personal value outcomes.
  • Recent events that may affect the person’s health, safety and goals
  • Review and develop next-step strategies and resources
What must the ISP include?

The ISP should include:

  • Specific goals
  • The supports the individual needs to reach those goals without regard to the availability of those goals.
  • Who is responsible for providing those supports.
  • How often and how much support are needed.
  • The criteria foe evaluating the effectiveness of the supports.
  • Team members responsibilities for monitoring the ISP implementation.
  • The date of the next ISP review.

Updated 2/22/24.

ADHD and Dyscalculia (Math)

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Studies suggests that between 4-7% of students have experience difficulty in math compared to 26% of children with ADHD.

This may be the result of the working memory, problem solving skills and inattentive skills all characteristics of a student with ADHD.

What is Dyscalculia?

Dyscalculia is defined as a learning disability specifically in math and numbers including the inability to understand the concept of numbers and applying math principles to solve problems. The following are signs and symptoms of dyscalculia:

  • Difficulty in counting backwards.
  • Difficulty in recalling facts.
  • Slow in performing calculations.
  • Difficulty with subtractions
  • Difficulty using finger counting.
  • Difficulty with the multiplication table
  • Poor mental math skills
  • Difficulty with understanding the concept of time.
  • May show signs of anxiety when conducting math activities.
  • May have a poor sense of direction (i.e. north, south, east, west)
Early signs of dyscalculia include:
  • Delays in learning how to count.
  • Delays in recalling facts.
  • Difficulty with time
  • Displays a poor memory.
  • May lose track when counting.
  • Difficulty sorting items by groups include color, shape, texture, and size.

Accommodations

Students diagnosed with ADHD qualify for accommodation in the classroom. Here are a few suggestions:

The ADHD magazine, ADDitude suggests the following accommodations to help students with ADHD and Dyscalculia:

  • Allow extra time on test
  • Provide frequent checks for accuracy during classroom activities.
  • List clearly numbered steps/procedures for multi-step problems
  • Use individual dry-erase boards.
  • Reduce the number of problems you assign.

VeryWell suggests the following accommodations for students expressing difficulties in math:

  • Allow the student to use desk copies of math facts such as multiplication table factsheet.
  • Allow the use of calculations in the classroom.
  • Provide models of sample problems and allow the students to use these models as a reference.
  • Decrease the number of math problems.
  • Allow the students to use graph paper rather than notebook paper.
  • Provide the student with review summaries to help prepare for tests.

Updated 2/20/24

Angleman Syndrome and Adulthood

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Angelman syndrome is a genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities, epilepsy, short attention span, hyperactivity, hand flapping and speech impairments. It is a rare disorder that affects 1 in 12,000 to 20,000 a year. there are less than 200,000 cases a year and affects all ethnicities and sexes equally.

Typically, there is a severe developmental delay and learning disability as well as near absence of speech and ataxia including ataxia including jerky movements of the arms and legs. People with Angelman syndrome generally have a happy demeanor and an inappropriate laughter.

Life expectancy appears to be normal. As people with Angelman syndrome age, scoliosis tends to worsen and for many people born with epilepsy, there are cases where seizures stop, however, they tend to return as the person gets older.

 

Health Issues in Adults

Several research studies show a number of health complications for adults with Angelman syndrome. Less than half of people with Angelman syndrome also have a diagnosis of seizures. Seizures begin in early childhood and can continue through adulthood. Poor sleep in adults continue to be a challenge. This includes difficulty falling asleep, frequent waking up during the night and waking up too early. Other issues include, constipation, scoliosis, self-injurious behavior and obesity.

Due to cognitive and medical needs, a person with Angelman syndrome will always require support. Most people with Angelman syndrome attend a day habilitation setting. Support should include

  • staff trained on identifying seizures and providing assistance.
  • programs that support the person’s short attention span
  • evaluation for a communication device or a means to communicate.
  • support for self-injurious behavior.

Updated 2/15/24.

Teaching Students with Angelman Syndrome

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Angelman Syndrome is a genetic disorder that affects the nervous system, characteristics that include developmental delays, intellectual disability, and speech impairments. Angelman syndrome generally go unnoticed until the age of 1 year. Children typically have a happy demeanor and have a fascination with water

Characteristics include developmental delay, intellectual disability, epilepsy, microcephaly, short attention span, happy demeanor, hyperactivity, hand-flapping.

Angelman Syndrome  is  a rare disorder and affects 1 in 12,000 to 20,000 a year. Equally to less than 200,000 case a year. Affects all ethnicities and sexes equally.

Associated behaviors include, tongue thrusting, feeding problems during infancy, sensitivity to heat, frequent drooling, and attraction to water.

Developmental delays include fine motor skills such as using a palmar grasp, holding an object, picking up objects, dressing/undressing, brushing teeth and other self-care task.

The following are articles on teaching strategies:

Angelman Syndrome-Bridges for Kids

Angelman Syndrome Educational Material

Angelman Syndrome– Ontario Teachers Federation

Angelman Syndrome– National Association of Special Educators

Angelman Syndrome in the Classroom- Puzzle Place

Communication strategies for children with Angelman Syndrome– Cleveland Clinic

Education Resources- Angelman Resources

Some Angelman Tips– Teaching Learners with Multiple Special Needs

Working with a child who has Angelman Syndrome– St. Cloud State University

Writing instruction for students with Angelman Syndrome– PracticalAAC

International Angelman Day

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Date: February 15, 2024

International Angelman Day is celebrated and recognized every February 15th. The purpose is to help spread awareness and education others on the rare genetic disorder.

What is Angelman Syndrome?

Angelman syndrome is a rare genetic disorder that id also considered a developmental disability. People with Angelman syndrome will also have an intellectual disability and limited speech. Angelman syndrome generally go unnoticed until the age of 1 year. Children typically have a happy demeanor and have a fascination with water.

Symptoms
  • developmental delay
  • intellectual disability
  • epilepsy
  • microcephaly
  • short attention span
  • happy demeanor
  • hyperactivity
  • hand-flapping
Associated Behaviors
  • tongue thrusting.
  • feeding problems during infancy
  • sensitivity to heat
  • frequent drooling
  • attraction to water
Prevalence

Angelman Syndrome is a rare disorder and affects 1 in 12,000 to 20,000 a year. Equally to less than 200,000 case a year. Affects all ethnicities and sexes equally.

Update 12/29/23

Congenital Heart Defect Week

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Date: February 7- February 14, 2024

Congenital Heart Defect Awareness Week is observed each year during February 7-14 to promote awareness and education about congenital heart defects. The disorder affects approximately one in 100 births every year in the United States and are the most common type of birth defect. It is estimated that 1 million children and 1.4 million adults in the United States were living with a congenital heart defect.

According to the Centers for Disease Control and Prevention (CDC. 1 in 157 children and 1 in 680 adolescents and adults had a heart defect. Heart defects are lifelong conditions that require ongoing specialty medical care.

CDC also reports that heart defects are  up to 8 times more likely to have a disability than adults without heart defects. Findings show that:

  • About 4 in every 10 adults with heart defects have a disability, with cognitive disabilities.
  • People with heart defect and at least one disability are more than likely to describe themselves as having poor mental or physical health.
  • Congenital heart defects affect nearly 1% or about 40,000- births per year in the United States.
  • CHD’s are the leading cause of birth defect-associated infant illness and death.
  • About 20% to30% of people with a CHD have other physical problems or developmental or cognitive disorders.
  • Children with CHD are about 50% more likely to receive special education services compared to children without birth defects.
  • The occurrence and severity of a developmental disability or delay increases with how complex the heart defects is.

The types of congenital heart defects include;

  1. atrioventricular septal defect (AV Canal)- a condition caused by the Septum failure to close properly. This occurs during the embryonic stage and results in a large opening at the center of the heart.
  2. Persistent Ductus Arteriosus- when a tube that continues to exists after a baby is born. It is a persistent opening between the two major blood vessels leading from the heart.
  3. Tetralogy of Fallot- a heart condition composed of four abnormalities: 1) Ventricular Septal Defect 2) a narrowing of the passage from the right ventricular to the lungs 3) an over enlarged right ventricle due to blood back up 4) an over enlarged aorta, which carries blood from the left ventricle to the body.

Congenital Heart Disease can range from severe to mild. Typically, students do not require special care. For those with more severe heart issues, be aware of the signs and symptoms of a student heart disease is getting worse. This includes:

  1. Arrhythmia, an abnormal heart rhythm that can cause the heart to beat fast or too slow
  2. Congenital heart failure- when the heart cannot pump enough blood and oxygen to meet the needs of the body.
  3. Pulmonary hypertension- a type of high blood pressure that affects the arteries in the lungs and the right side of the heart.
  1. Signs and symptoms include:
  • shortness of breath
  • fatigue and weakness
  • swelling
  • rapid or irregular heartbeat
  • persistent cough

Things to be aware of in students with heart issues:

  • Tires easily or becomes short of breath after exercise.
  • May have exercise restrictions.
  • May need extra time to go and from classes.

 

 

 

Updated 2/3/24.

What is Turner Syndrome?

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February is Turner Syndrome Awareness Month. It is a rare disease that occurs in between one and 2,000 birth only affecting females. Turner Syndrome has several names including Ullrich-Turner Syndrome, Bonnevie-Ullrich-Turner Syndrome. gonadal dysgenesis and 45X. This rare disease is the result of the absence of one set of genes from the short arm of one X chromosome.

Special Needs Challenges

While girls and women with Turner Syndrome usually have normal intelligence, there is a risk of learning disabilities involving spatial concepts including math and memory and ADHD

Teaching Strategies:

Young girls diagnosed with Turner Syndrome during their early development may have delays in learning the alphabet, speech, difficulty in following one command at a time and conceptual difficulties such as up and down. Signs and symptoms of math or dyscalculia challenges include difficulty with counting money, estimating time, losing track when counting and remembering phone numbers or zip codes. The following strategies should be used when teaching students diagnosed with Turner Syndrome:

  • Use flashcards to aid in memory as well as workbooks, games and video’s.
  • Break learning into smaller steps by using a task analysis framework.
  • Administer probing and feedback as a check in
  • Model instructional practices
  • Provide prompts
  • Use visuals such as diagrams, graphics and pictures.
  • Give clear directions
  • Use multiple models including visual and auditory learning models
  • Make sure directions are clear
  • Allow time to process and take notes

Updated 2/3/2024

Feeding Tube Awareness Week 2024

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Date: February 4-10, 2024

Color: Blue and Purple

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support and also provides hydration and medication directly to the stomach or intestine.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent.

Reasons to use a feeding tube.

The student or individual may have a swallowing disorder or dysphasia. This means there is an increased risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.

Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

Types of G-Tubes

Nasogastic Feeding Tube

The Gastrostomy tube (G-Tube) is placed through the skin into the stomach and is usually for short-term tube feeding.

Gastrostomy tube 

Is placed through the skin into the stomach and the intestine. Used for long-term use and is used for a person who has a risk for aspiration and has difficulty keeping food from moving from the stomach to the intestine.

Jejunostomy tube

Goes through the skin directly into the small intestine and is used for long- term feeding when there is a blockage in the stomach.

 

Side Effects

  • cramps
  • constipation
  • aspiration
  • vomiting
  • bloating

Care of the feeding tube

  • Should be cleaned daily.
  • The feeding tube should be flushed with water after the feeding. This will prevent clogging.
  • In order to prevent skin breakdown, keep the site open to air as much as possible and apply waterproof skin protection.
  • Notify your healthcare professional if there is any redness, swelling, four odor and skin breakdown around the area.
he following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 Deletion Syndrome

Angelman Syndrome

Aspiration

Cerebral Palsy

CDKL5 Disorder

Cornelia de Lange

Cri Du Chat Syndrome

Down Syndrome

Dravet Syndrome

Dysphasia

Edwards Syndrome

Fetal Alcohol Syndrome

Fragile X Syndrome

Hydrocephalus

Lennox-Gestaut Syndrome

Microcephaly

Ohtahara Syndrome

PPD- Not Otherwise Specified

Turner Syndrome

Trisomy 18

Spastic Diplegia

Traumatic Brain Injury

West Syndrome

Williams Syndrome

Turner Syndrome Awareness Month

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Date: February 1-February 29, 2024

Symbol: Butterfly

Color: Purple

What is Turner Syndrome?

It is a rare disease that occurs in between one and 2,000 birth only affecting females. Turner Syndrome has several names including Ullrich-Turner Syndrome, Bonnevie-Ullrich-Turner Syndrome. gonadal dysgenesis and 45X. This rare disease is the result of the absence of one set of genes from the short arm of one X chromosome. The syndrome was first described by American endocrinologist Henry Turner in 1938.

Characteristics of Turner syndrome include facial and physical appearance, cognitive characteristics, clinical issues and mental healthy symptoms. No two people with Turner syndrome are exactly the same therefore, not everyone will display the same characteristics:

Facial Appearance
  • down-turning eyelids
  • low-set and prominent ears
  • small jaw
  • high narrow roof of mouth
  • neck webbing
Physical Appearance
  • broad chest with widely spaced nipples
  • narrow fingernails and toenails
  • hand and feet swelling
  • short fingers
  • smaller than average height
  • skin moles
Medical Issues
  • chronic middle ear infections
  • hearing loss
  • heart, liver and kidney abnormalities
  • delayed puberty
  • undeveloped ovaries
  • greater risk for diabetes
  • high risk for celiac
  • high risk for osteoporosis
  • GERD
  • scoliosis
  • hypertension
  • high risk obesity
  • may not have menstruations
Cognitive
  • normal intelligence in some cases
  • issues with visual spatial
  • nonverbal memory
  • executive function issues
  • difficulty in understanding social cues
  • behavior issues.
Mental Health
  • low-self-esteem
  • anxiety
  • depression

Treatment

There is currently no cure for Turner syndrome. Thee following are used to treat including therapies:

  • Growth hormones
  • Estrogen replacement therapy

 

Update: 1/29/24

Moebius Syndrome Awareness Day

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Date: January 24, 2024

Moebius Awareness Day brings awareness to the syndrome and to honor the birth date of Professor Paul Julius Moebius who first diagnosed the syndrome in 1888.  Congenital facial palsy was first discovered by Albrecht Von Graefe in 1880 and is considered the father of modern Ophthalmology. Moebius Syndrome Awareness Day was first recognized in 2011 by The Many Faces of Moebius.

Professor Paul Julius Moebius was a German neurologist who made contributions in the area of mental illness and understanding hysteria. He is considered one of the fathers of psychotherapy. Professor Moebius was the first to identify the syndrome as a rare type of palsy affecting facial expressions.

What is Moebius Syndrome?

Moebius syndrome is a rare, genetic disorder which is characterized by a weakness or paralysis of facial nerves. It is present at birth and affects the muscles that control eye movement and facial expressions including the inability to smile or frown. It is extremely rare and affects 1 in 50,000 to 1 in 500,000 newborns and affects all ethnicities and genders equally.

Signs and symptoms

Moebius Syndrome affects each person differently. The diagnostic criteria include facial paralysis affecting at least one side of the face, paralysis of sideways movement of the eyes and vertical movement of the eyes. Other signs include:

  • Cleft Palate
  • Dental issues
  • Motor Delays
  • Difficulty with speech
  • Difficulty swallowing
  • Inability to form facial expressions.
  • Weakness of the facial muscles
  • Dry eyes

What causes Moebius Syndrome?

The causes are unknown. However, it is felt that the condition is more likely caused by genetics involving the genes that are associated with chromosomes 3, 10, and 13.  Environmental causes are also a factor including the use of drugs during pregnancy. In some cases, it can occur in families with no history of the disorder in the family.

Moebius Syndrome is typically diagnosed through sign and symptoms and detailed patient history.

Updated 12/29/23

International Day Of Acceptance

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Date: January 20, 2024

The International Day of Acceptance is held each year to celebrate abilities rather than disabilities. The annual celebration was created by Annie Hopkins. Although living with a disability, Annie pushed through perceived limitations and lived to focus on her abilities. She created educational YouTube videos and in 2007 along with her brother, started a company to spread the message of “abilities for all.” Annie passed away in 2009 but her message on encouraging people with disabilities to embrace who they are.

The goal of International Day of Acceptance is to encourage people to change by demonstrating acceptance and embracing people of all disabilities.

1/3/24

National Birth Defects Prevention Month

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Start: January 1-January 30, 2024

January is National Birth Defects Prevention Month and is a nationwide effort to raise awareness of birth defects and the impact on families.

Birth defects can be diagnosed during pregnancy or after the baby is born. Birth defects occur when there are structural changes during the first three months of pregnancy affecting one or more parts of the body. About 1 in 33 babies (3%) are born in the United States is born with a birth defect. Birth defects are also the leading cause of infant deaths accounting for 20% of all infant deaths.

Types of birth defects include:

  • Anencephaly
  • Spina Bifida
  • Cleft Lip/Cleft Palate
  • Down Syndrome
  • Microcephaly
  • Muscular Dystrophy
  • Edwards Syndrome
  • Patau Syndrome

Not all birth defects are preventable however, the following are steps you can take for a healthy baby:

  • Try to prevent infections.
  • Wash your hands regularly.
  • Get 400 units of folic acid every day.
  • See a healthcare professional on a regular basis.

Updated 12/29/23

An Overview of Ohtahara Syndrome

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Published by: VeryWell Health
Written by: Heidi Moawad

Ohtahara syndrome is a rare type of epilepsy that begins during infancy. It is also called early infantile epileptic encephalopathy. Children who have Ohtahara syndrome experience seizures and have severe developmental problems. This type of epilepsy is associated with a characteristic pattern that can be recognized on an electroencephalogram (EEG). Anti epilepsy drugs (AEDs) are usually needed to help manage the seizures.  This condition is not curable, and children who have Ohtahara syndrome are not usually expected to survive beyond early childhood. There are exceptions, and some people with this syndrome may continue to live into adulthood, but they tend to have persistent epilepsy and physical and cognitive deficits.

Symptoms

Children who have Ohtahara syndrome experience their earliest seizures before the age of 3 months. They may seem healthy at birth, but can start to have jerking movements within a few weeks. In some cases, mothers may recall that their baby actually started having erratic movements during the pregnancy.

Babies who have Ohtahara syndrome may experience several types of seizures. The most common seizure types in Ohtahara syndrome include:

Tonic seizures: This is the most common type of seizure that occurs in Ohtahara syndrome. It is characterized by a stiffening of the arms and legs, usually lasting a few seconds. Click here to read the rest of the story.

What to Know About Dyslexia and ADHD

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Published by: Psych Central
Written by: Gia Miller

They have some shared symptoms, but dyslexia and ADHD are separate conditions. Here’s how to to tell them apart and tips for managing these conditions.

Dyslexia and attention deficit hyperactivity disorder (ADHD) are two neurological conditions that can make learning more difficult.

The former affects 11%, and the latter affects between 5 to 20%, but it’s difficult to estimate precisely.

Sometimes, the symptoms of ADHD and dyslexia can be hard to tell apart — as both can cause trouble with reading and writing. But even though the symptoms can appear similar, the underlying reasons for the symptoms are very different.

What is dyslexia?

Dyslexia is a condition that impacts your ability to use language. You may have trouble matching letters to sounds or recognizing the sounds in words. This can make it hard to read and understand what you’re reading.

Dyslexia can also make spelling, writing, or math more difficult. Click here to read the story

When Rett Symptoms Change

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Published by: Rett Syndrome News
Written by: Jackie Babiarz

My 12-year-old daughter, Cammy, has Rett syndrome. Some days, Rett syndrome has Cammy.

During the early-onset stage, which typically occurs between 6 and 18 months of age, children may experience abnormal hand movements, difficulty sitting independently, and speech or language problems. Cammy was no different.

Repetitive hand movement is a hallmark sign of Rett, and Cammy had been hand mouthing from 12 months on. Her left hand was constantly in her mouth, causing sores. Other kids with Rett may wring their hands or pull out their hair. At 18 months, it was this behavior that tipped off Cammy’s physiatrist to the fact that she had Rett syndrome. Shortly after Cammy was diagnosed, her sister, Ryan, was born. Their two-year age gap began closing within a couple months when Ryan showed evidence of already being stronger than Cammy. Click here to read the rest of the story.

5 common learning disabilities

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Published by: Washington Times Herald
Written by: Metro Creative Connection

Students are often told that hard work is the path to success. Individuals who have learning disabilities may have to work even harder than their peers to be successful.

The Learning Disabilities Association of America says learning disabilities occur due to neurobiological and/or genetic factors that alter the way the brain functions. This can affect one or more cognitive processes related to learning and interfere with various skills, potentially preventing a person from acquiring the same amount of knowledge as others of the same age.

There are many learning disabilities, and the following are five of the most common, according to LD Resources Foundation, Inc., a nonprofit organization that helps find solutions to those who are affected by learning disabilities.

1. Dyslexia: This learning disability can impede a person’s ability to read and comprehend text. Students may have trouble with phonemic awareness, or the way to break down words. Similar problems with phonological processing, or distinguishing between similar word sounds, can occur as well.

2. ADHD: Attention deficit/hyperactivity disorder is marked by behaviors that make it difficult to pay attention and stay on task. The Masters in Special Education, a resource for finding work and study in special education concentrations, says there is debate over whether ADHD is a learning disability. But there is no denying that ADHD can impede success in school settings.

Click here to read the rest of the story

ADHD Time Blindness Contributes to My Impulse Spending

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Published by: Health.com
Written by: Mikhal Weiner

For me, the worst part of ADHD isn’t being fidgety or hyper-focused; it’s under-discussed symptoms such as time blindness and impulsive spending—which have made my finances a constant struggle.

ADHD (Attention Deficit Hyperactivity Disorder) is often associated solely with the obvious symptoms—such as fidgeting, cutting up in class, and general disorganization. While this is an accurate description of certain aspects of ADHD, there are far more (often overlooked) symptoms of this disorder—that wildly affect the lives of those, like me, with ADHD.

For me, those underreported symptoms include time blindness as well as impulsive spending—symptoms that have made managing my finances a constant struggle. Even though I usually manage to keep away from overspending, I can only achieve this by keeping myself on a very short (at times, painful) leash. Click here to read the rest of the story.

Fetal Alcohol Syndrome is preventable

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Published by: Daily News
Written by: Kevin Green

FASD (Fetal Alcohol Syndrome Disorder) is a condition that results from alcohol exposure during the mother’s pregnancy. FASD causes brain damage and growth problems. The problems vary from child to child, but defects are not reversible.

The fetus can be affected regardless of the amount or frequency of alcohol consumed by the mother. Each year 630,000 babies with FASD are born globally. The average life expectancy of people with FASD is 34 years of age, with extreme causes accounting for 44% of all deaths. Not only will alcohol lead to various physical defects including brain malformation, but mental issues and neurological problems. FASD is 100% preventable.

Disabilities can vary from abnormal appearance, shorter height, hyperactivity, learning disabilities, poor judgment skills, vision and hearing problems, and problems with the heart, kidneys, and bones.

Distinctive facial features include small eyes, an exceptionally small upper lip, a short upturned nose, and a smooth skin surface between the nose and upper lip.

Drinking alcohol during pregnancy allows alcohol to enter the bloodstream and reaches the developing fetus by crossing the placenta. Alcohol causes higher blood alcohol concentrations in your developing baby than in the mother’s body because the fetus metabolizes the alcohol slower than an adult does. Alcohol interferes with the delivery of oxygen and optimum nutrition to your developing baby.

Exposure to alcohol before birth can harm the development of tissues and organs, causing permanent brain damage in your baby. Click here to read the rest of the story

Sickle Cell Disease Getting the Support it Needs.

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Published by: Chicago Defender
Written by: Shera Strange

Sickle Cell Disease or Sickle Cell Anemia is not talked about as much as it was in the 60s, 70s, and 80s, however, the disease was discovered in America in 1910, over 110 years ago.  Sickle Cell Anemia is an inherited red blood cell disorder where there are not enough healthy red blood cells to carry oxygen throughout the body. The round red cells usually are flexible and can quickly move through the blood vessels. Sickle Cell Disease (SCD) can affect individuals of any ethnicity or race but is more common in African Americans in the U.S. compared to other ethnicities-occurring in approximately 1 in 364 African Americans.

In early Sickle Cell Disease awareness campaigns, The Black Panther Party took up the fight for health and opened free health clinics across the country. In addition, the Black Panther Party recognized that Sickle Cell Anemia was a neglected genetic disease because most of those affected were Black. The party set up a national screening program by running a rapid sickle cell screening program on a simple finger stick.

Access to high-quality health care is a significant challenge in the Sickle Cell Disease community, exacerbated by the impact of COVID-19 and longstanding healthcare disparities.

A local organization received a grant to support those in Chicago’s underserved communities with Sickle Cell Disease. The Sick Cells organization was named a distinguished grantee of the Global Blood Therapeutics (GBT) 2021 Access to Excellent Care for Sickle Cell Patients (ACCEL) Grant Program. Global Blood Therapeutics is a biotech company dedicated to discovering, developing, and delivering life-changing treatments for people living with dire blood disorders, such as Sickle Cell Disease. Established in 2019, the ACCEL Grant Program supports community-based organizations and institutions in accelerating the development of sustainable access-to-care programs. In 2020, the grants focused on the transition of care from pediatrics to adult purpose care. As a result, individuals with Sickle Cell Disease did not have the opportunity to connect with a program in the adult setting the same way they have in the pediatrics setting. Click here to read the rest of the story

Do I Have ADHD? 8 Subtle Signs in Adults

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Published by: PsychCentral
Written by: Gia Miller

If you’ve ever wondered whether you have attention deficit hyperactivity disorder (ADHD), you’re not alone.

When many people hear the term “ADHD,” they often think of how it presents in children. They may not even know that ADHD also impacts adults.

In fact, the misconception that it doesn’t affect adults is part of the reason why ADHD is not effectively diagnosed after childhood. People with ADHD might not realize that the symptoms can be present into adulthood.

In fact, studies have shown that 50% to 80% of children with ADHD carry it on to adolescence, and another 35% to 65% then carry it into adulthood.

It was a common belief that ADHD disappeared in adulthood, and this was probably because ADHD looks different in adults than it does in children, and its symptoms were overlooked. The truth is, researchers believe that at least 75% of adults who have ADHD don’t even know that they have it.

So, what does it look like? Here are some of the subtle signs you may have ADHD.

1. Having an altered sense of time

One of the hallmarks of ADHD is “living in the now.” People with ADHD find it hard to keep track of time. They’re often late for appointments, can’t accurately estimate how long it will take for them to complete a task, and leave complicated tasks until the last minute. This is referred to as “time blindness.”

The reason this happens, according to researchers, is that the brain’s prefrontal cortex — which is responsible for executive functioning — doesn’t work as well at managing focus and behavior in adults with ADHD.

This is also the part of the brain that helps you plan for the future. It’s what allows you to prepare yourself for what’s coming next and plan how much time you have to realistically complete tasks.

If that part of the brain isn’t functioning properly, then you’re unable to accurately look into your future.

As a comparison, think of people who are nearsighted: They can only read things that are near to their face. Similarly, people with ADHD sometimes have difficulty anticipating and preparing for future events. The farther away an event is, the harder it is to deal with it.

2. Lack of executive functioning skills

For people with ADHD, time management isn’t the only difficulty. Other executive functioning skills can be challenging too, making it hard to manage the details of your life.

A person with ADHD will find it difficult to organize their thoughts and manage their schedule. You’ll likely also struggle with planning and prioritizing the order of tasks that you’re supposed to do, which can make it hard to meet deadlines.

While the level of executive functioning will vary from person to person, all folks with ADHD will find some challenges in each of the following categories when it comes to doing tasks or assignments:

  • organizing, prioritizing, and getting started
  • concentrating and staying focused, as well as shifting your attention to a new task
  • staying alert, maintaining the same level of effort, and understanding what you’re doing
  • managing your frustration and emotions
  • holding and using multiple pieces of information at once, and remembering things you’ve read or learned
  • controlling your actions

9 ADHD symptoms in children parents should look out for

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Published by: WAFB 9
Written by: Charlotte LoBuono

In general terms, children with ADHD often have trouble staying focused and exhibit hyperactive and impulsive behaviors. Roughly twice as many boys as girls were diagnosed with ADHD in 2015-2016. ADHD is a chronic condition that may carry over into adulthood.

HeyTutor compiled a list of nine common ADHD symptoms found in children. While HeyTutor consulted established medical organizations including the CDCand the Mayo Clinic, only health care professionals—child psychologists, psychiatrists, and primary care providers—can appropriately diagnose children with ADHD. Diagnosing ADHD can be challenging because so many of its symptoms are, in milder forms, common behaviors seen in most children—from trouble listening to loud play.

Parents can take the first step in helping children who exhibit ADHD symptoms by contacting a medical professional for a consultation (or several) to confirm whether the symptoms fit a formal ADHD diagnosis. A doctor will be able to determine whether another condition may better explain the symptoms—or, as is often the case, if the child has a coexisting condition along with ADHD. Click here for the rest of the story.

How ADHD May Affect Reading

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Published by: Psych Central
Written by: Morgan Mandriota

Many people enjoy cuddling up on the couch with a book as a way to wind down. But people with attention deficit hyperactivity disorder (ADHD), especially children, might find reading much more frustrating than relaxing.

This is because those with ADHD tend to experience reading problems.

ADHD is a common neurodevelopmental disorder that impacts children and adults differently, but many people report reading difficulties with ADHD.

So how does ADHD affect reading comprehension? It can be challenging for many reasons, including difficulty with:

  • focusing
  • memory and retention
  • processing information
  • sitting still
  • managing time
  • managing distractions (e.g., distracting thoughts or stimuli in the environment)

“Given difficulties with sustained attention, reading can be particularly difficult as kids often report rereading passages over and over again given lack of focus and being easily distracted,” says Angelique Snyder, Psy.D., a pediatric psychologist at the Children’s Hospital of San Antonio.

“Their inability to focus and concentrate may make it harder for them to visually track information and retain what they just read, so both their reading speed and comprehension can suffer,” adds Dr. Judy Ho, board certified clinical neuropsychologist and a psychology professor at Pepperdine University.

A 2019 study suggests that reading disabilities and ADHD typically co-occur. Snyder notes that kids with ADHD also tend to have comorbid learning disorders, which can affect reading. Click here for the rest of the story.

Treating ‘Fragile X Syndrome’ autism symptoms

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Published by: ABC News

Holly is her mom’s little princess. But this girl’s fairy tale started with a scare. While pregnant with Holly, Vicki Davis found out she was a carrier of Fragile X Syndrome.

“I had never heard of it. I had no clue what it was,” said Vicki.

It’s a mutation of a gene on the X chromosome that leads to a lack of protein production, critical for development. It’s one of the most common causes of mental retardation.

“Thirty percent of individuals with Fragile X Syndrome have full autism. Another 30 percent have an autism spectrum disorder,” said Dr. Randi Hagerman, UC Davis MIND Institute.

Hagerman says she first met Holly when the girl was just a few months old. The infant’s Fragile X Syndrome was subtle.

But, “She was extremely delayed,” said Hagerman.

As part of a clinical trial, Holly started taking a serotonin medication. Then, minocycline, a common antibiotic normally used to treat acne, was added to her regimen.

“Her developmental testing just improved remarkably,” said Hagerman.

Holly didn’t start talking until she was 2 and a half years old. Vicki says additional minocycline treatments around that time helped her catch up to other kids, and even excel. At just 4 she started reading.

“The medication really helped her create some of those pathways that taught her how to learn,” said Vicki. Hagerman hopes the treatments that helped Holly could do the same for kids with autism. And that could mean a lot more children living happier and healthier lives.

The drugs Holly was treated with have a few side effects, mostly involving the stomach. Hagerman says the drug treatment can be used in older kids with Fragile X Syndrome. However, the results might not be as dramatic. The UC Davis MIND Institute is currently testing other drugs to improve the symptoms of Fragile X for patients up to 25 years old.  Click here to read the rest of the story.

Helen Keller Deaf Blind Awareness Week

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Date: 

Helen Keller Deaf-Blind awareness Week is observed each year the last week in June in honor of Helen Keller’s birthday on June 27th.

On June 22, 1984, President Ronald Reagan proclaimed the week beginning June 24, 1984 as Helen Keller Deaf-Blind awareness Week. The purpose is to encourage public recognition of and compassion for the complex problems caused by deaf-blindness and to emphasize the potential contributions of deaf-blind people.

Suggested Activities

Write a letter to your local legislator- congressman, mayor, governor as and ask for a proclamations

share stories on social media

SPREAD AWARENESS

International Dravet Syndrome Awareness Month

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Date: June 23, 2022

Epilepsy is the 4th most common neurological disorder in the United States. With children, around 400,000 have epilepsy and most are able to control their seizures and lead normal lives. Dravet Syndrome is a rare form, of epilepsy found in children. Symptoms include, developmental delays, sleeping conditions, and chronic infections. Here are 20 facts you should know about Davet Syndrome.

20facts.dravet

  • Charlotte Dravet first described severe myoclonic epilepsy of infancy in France, 1978.
  • The name was later changed in 1989.
  • It is also called Severe Myoclonic Epilepsy of Infancy (SMEI)
  • It is a rare genetic disorder affecting 1 in every 20,000-40,000 children.
  • It appears during the first year of life.
  • Developmental disabilities and abnormal EEGs are often not evident until the second of third year of life.
  • Seizures are often fever related.
  • It is rare to develop beyond the age of 5.
  • Children often experience poor development of language and motor skills.
  • Is caused by defects in a gene in 79% of cases.
  • Affects 2-5% of children in North America
  • It is induced by prolonged exposure to warm weather
  • It is associated with sleep disorder including insomnia.
  • Seizures are frequently resistant to treatment.
  • There is a higher risk of Sudden Unexplained Death in Epilepsy (SUDEP) (15-20%)
  • The onset of signs and symptoms is around 6 months old
  • Children diagnosed with Dravet Syndrome have a 85% chance of survival.
  • Development is typically normal.
  • Episodes may be frequent and prolonged.

 

WHAT IS CDKL5 DEFICIENCY DISORDER?

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Published by: International Foundation for CDKL5 Research

CDKL5 deficiency disorder is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity. The hallmarks are early-onset, intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech, and visual function. Although rare, the occurrence is believed to be ~1:40,000 -75,000 live births, making it one of the most common forms of genetic epilepsy.

The CDKL5 gene provides instructions for making proteins that are essential for normal brain and neuron development. The CDKL5 protein acts as a kinase, which is an enzyme that changes the activity of other proteins by adding oxygen and phosphate atoms (a phosphate group) at specific positions. Researchers have not yet determined which proteins are targeted by the CDKL5 protein.

CDKL5 was first identified in 2004, it stands for cyclin-dependent kinase-like 5, and its location is on the X chromosome. The X chromosome is one of the sex chromosomes; females have two X’s, and males have one X and one Y chromosome. The letters are an abbreviation of the scientific name of the gene, which describes what it does. The CDKL5 gene was previously called STK9. Many cases have been identified in boys, but because of the location of the gene, CDD mainly affects girls.

We do not fully know the cause of CDKL5 deficiency disorder at this time. Mutations have been found in children diagnosed with Infantile Spasms, West Syndrome, Lennox-Gastaut, Rett Syndrome, cerebral palsy, autism, and intractable epilepsy of unknown origin.

Through scientific research and collecting information through the CDKL5 International Database and at our Centers of Excellence, we are working hard to find all of the pieces of this puzzle. It is important to note that scientists and doctors do not know the full spectrum of CDKL5 disorders at this time. There are likely many people affected by CDKL5 who have mild symptoms and no seizures. With continued research and awareness of CDKL5, we hope to build a more comprehensive understanding of the spectrum of this disorder as we continue the search for a desperately needed cure. Click here to read the rest of the story.

Dravet Awareness Month

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Date: June1, 2022-June 30, 2022

Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI) is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime.

Dravet syndrome has an estimated incidence rate of 1:15,700 comorbidities include developmental delays. Common signs and symptoms include:

  • prolonged seizures
  • frequent seizures
  • behavioral and developmental delays
  • movement and balance issues
  • delayed language and speech issues.

Children with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected death in Epilepsy), prolonged seizures, seizures-related accidents such as drowning and infections

Ways to get Involved:

help through fundraising

purchase merchandise

change your social media profile to bring awareness to Dravet syndrome

Tourette Syndrome Awareness Month

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Date: May 15- June 15, 2022

June is Tourette Syndrome Awareness Month.

What is Tourette Syndrome?

According to the Tourette Association of America, tics are involuntary, repetitive movement and vocalizations. They are the defining feature of a group of childhood-onset, neurodevelopmental conditions known collectively as Tic disorders and individually as Tourette Syndrome.

Tics are common in childhood. The estimated prevalence of Tourette Syndrome disorder range from 3 to 8 per, 1,000 in school-aged children. Males are more commonly affected than females. Some people may have tic-free periods of weeks to months.

There are three types:
  1. Motor tics cause a movement including eye blinking, facial grimacing, jaw movements, and head bobbing
  2. Vocal/phonic tics produce a sound including throat clearing, grunting, hooting, and shouting
  3. Provisional tic disorders involve a person who experiences involuntary motor and/or verbal tics for one year.
Signs and Symptoms:

Tic Disorders:

  • eye blinking
  • coughing
  • throat clearing
  • sniffing
  • facial movement
  • shoulder shrugging

Vocal Tics:

  • barking or yelping
  • grunting
  • repeating what someone else says
  • shouting
  • sniffing
  • swearing
Co-Occurring Disorders Include:
  • Attention Deficit/Hyperactivity Disorder (ADHD)
  • Obsessive -Compulsive Disorder
  • Learning difficulties
  • Behavior problems
  • Anxiety
  • Mood problems
  • Sleeping issues
  • Social skills and deficits

Resources:

Ways to raise awareness: Participate in Awareness Month – Tourette Association of America

Williams Syndrome Awareness Month

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Date: May 1- May 30, 2022

May is Williams Syndrome Awareness Month.

What is Williams Syndrome?

Williams Syndrome also known as Williams-Beuren syndrome was discovered in 1961 by J.C.P. Williams, a Cardiologist from New Zealand. Williams Syndrome is a rare disorder with a prevalence of in 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Williams syndrome symptoms include heart problems, low birth weight, l problems and developmental delays. 75 are diagnosed with mile to moderate intellectual disabilities or a learning disability.

Facts and Statistics
  • It is a genetic condition that is present a birth.
  • It is a developmental disorder
  • Tend to have a mild or moderate intellectual disability.
  • It is also known as Beuren Syndrome and Williams-Beuren Syndrome.
  • The symptoms were first described by John C.P. Williams in 1961.
  • A year later, German Physician, A.J. Beuren described three new incidents of patients with similar facial features.
  • It is caused by the spontaneous deletion of 26-28 genes on Chromosome #7
  • The deletion is caused by either the sperm or the egg.
  • The deletion is present at the time of conception
  • The most common symptoms of Williams Syndrome includes unusual facial features and heart defects.
  • The diagnosis is typically confirmed after identifying facial features and genetic testing.
  • An individual with Williams Syndrome has a 50% chance of passing the disorder on to their children.
  • Williams Syndrome affects 1 in 10,000 people worldwide.
  • An estimated 20,000 to 30,000 people in the United States are affected.
  • It occurs in both males and females equally
  • It is found in every culture
  • Individuals with Williams Syndrome tend to be overly friendly.
  • People with Williams Syndrome often have difficulty with visual-spatial tasks
  • Congenital heart defects (CHD) occur in approximately 75 percent of children
  • By the age of 30, the majority of individuals with Williams Syndrome have pre-diabetes or diabetes.

Physical characteristics include:

Musculoskeletal

Almond shape eyes

Broad forehead

long neck

Longer upper lip

Puffiness around the eyes

sloping shoulders

Small chin

Small upturned nose

Wide mouth

Learning Characteristics

During Williams Syndrome Awareness Month, You can create a fundraising page or team

Download awareness event planning tools

purchase an awareness t-shirt

For more information: Awareness Month | Williams Syndrome Association (williams-syndrome.org)

WHAT ARE THE EHLERS-DANLOS SYNDROMES?

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Published by: The Ehlers-Danlos Society

The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins.  

They are generally characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation (partial separation of the articulating surfaces of a joint)) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor. In the rarer types of EDS, there is also weakness of specific tissues that can lead, for example, to major gum and dental disease, eye disease, cardiac valve and aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture. 

The Ehlers-Danlos syndromes are currently classified into thirteen subtypes. In all but the hypermobile subtype (hEDS) genetics variants have been identified as the cause for the disorder and are part of the diagnostic criteria. Since the publication of the 2017 criteria for EDS a couple of other genes have been identified describing additional new subtypes. In particular, these include AEBP1-related EDS, and a COL1A1/A2 gene variant causing an overlap between EDS and Osteogenesis Imperfecta. 

Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms can be matched up to the major and minor criteria to identify the subtype that is the most complete fit. That said, there can be substantial overlap between the EDS subtypes. 

Sometimes a “provisional clinical diagnosis” of an EDS subtype is made. This can occur when a person meets a minimal clinical requirement but has no access to molecular confirmation or whose genetic testing shows one or more gene variants of uncertain significance. These individuals should be followed clinically, and alternative diagnoses and expanded molecular testing, skin histology (microscope examination of a skin biopsy), and testing of possibly affected family members should be considered. 

Please remember that an individual’s experience with EDS is their own and may not necessarily be the same as another person’s experience. Diagnostic criteria are meant. Click here to read the rest of the story

Autism Acceptance Month

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Date: April 1- April 30, 2022

What is a Autism Spectrum Disorder?

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that impacts social, speech, behavioral and motor skills. It is a spectrum disorder meaning it varies from person to person. No two people have the same symptoms. It is estimated that 1% of the population is diagnosed with autism.

Prevalence

About 1 in 40 children has been identified with autism spectrum disorder (ASD).

1 in 42 boys are diagnosed with autism

1 in 189 girls are diagnosed with autism

100 individuals are diagnosed everyday

ASD is reported to occur in all racial, ethnic and socioeconomic groups.

ASD is 4 times more common among boys than girls.

Studies in Asia, Europe, and North American have idendified individuals with ASD  with an average prevalence of between 1% and 2%.

About 1 in 6 children diagnosed with autism also have a developmental disability.

Parents who have a child with ASD have a 2%-18% chance of having a second child diagnosed with autism

Almost half (44%) of children diagnosed with ASD has average to above average intellectual ability.

ASD commonly co-occurs with other developmental, psychiatric, neurological, chromosomal and genetic diagnoses.

Stimming

  • It is also prevalent among people on the autism spectrum.
  • In fact in many cases, it is part of the diagnosis due to the repetition of stimming.
  • Stimming is often used as a means to self-regulate, self-calm and for self-expression.
  • The movements are repetitive and are used to self-stimulate the 7 senses.
  • It is often described as a repetitive motor behavior that can disrupt academic and social and other activities.
  • One of the theories behind stimming is that beta-endorphrins are released in the brain casuing an euphoric feeling which is generally a response to pain.
  • Stimming behavior. based for self-soothing and to help a child or an adult regain emotional balance.
  • Sensory Overload. Too much sensory information can lead to stress, anxiety and eventually a meltdown.

Wandering Statistics

  • Nearly half of children with autism engage in wandering behavior
  • Increased risks are associated with autism severity
  • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Half of families report they have never received advice or guidance about elopement from a professional
  • Accidental drowning accounts for 71% of lethal outcomes, followed by traffic injuries at 18%
  • Other dangers include dehydration; heat stroke; hypothermia; falls; physical restraint; encounters with strangers
  • Accidental drowning accounted for 91% total U.S. deaths reported in children with autism due to wandering.

 

Resources

Download Factsheet

Autism and Visual Impairment

Epilepsy and Autism

Self-Regulation and Autism

World Asthma Day

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Date May 5, 2022

World Asthma Day is organized by the Global Initiative for Asthma is held each May to raise awareness of asthma worldwide.

World Health Organization (WHO) recognizes that asthma is of major public health importance. According to WHO, it is estimated that more than 339 million people had asthma globally and there were 417,918 deaths due to asthma at the global level.

Asthma Facts

  • Each child reacts differently to the factors that may trigger asthma
  • There is no cure for asthma but can be managed with proper prevention pf asthma attacks an treatment
  • More Americans than ever before have asthma. It is one of the country’s most common and costly diseases.
  • Asthma is more common in boys than girls.
  • It is the leading chronic disease in children
  • Asthma is more common in adult women than adult men
  • African Americans are five times more likely than white Americans to visit the emergency department
  • On the average, ten Americans die from asthma each day
  • When a child has asthma, their lungs are extra sensitive to certain stimuli or “triggers” which range from viral infections to allergies

National Asthma and Allergy Awareness Month

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Date: May 1- May 30, 2022

National Asthma and Allergy Awareness month began in 1984 and is sponsored through the Asthma and Allergy Foundation (AAFA).

Asthma is a chronic disease that causes your airways to become inflamed, making it difficult to breathe.

Allergies are one of the most chronic diseases. It occurs when the body’s immune system sees a substance as harmful and overreacts to it causing an allergic reaction.

Facts
  • Asthma is a chronic inflammation of the lung airways that causes coughing, chest tightness, and a shortness of breath.
  • 8.3% of Americans have asthma
  • Asthma prevalence is higher in children (9.4 percent) than in adults (7.7 percent).
  • Asthma results in 439,000 hospitalizations and is 1.3 million emergency room visits annually
  • Asthma is the most chronic illness in childhood
  • More than 3,500 people die of asthma each year
  • Asthma symptoms can be triggered by exposure to an allergen
  • Asthma is often hereditary
  • There sis no cure for asthma
  • Weather conditions such as extremely dry, wet or windy weather can worsen an asthma condition.
  • About 32 million Americans have food allergies
  • About 24 million Americans have hay fever

Ways to bring awareness:

Educate yourself by downloading a factsheet: AAFA Asthma Facts and Figures April 2021

Use tools to educate family, friends, school and work

Follow on organizations on social media

Order a T-shirt

raise money and donate to a nonprofit organization

Prader Willi Syndrome Awareness Month

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Date: May 1- May 31, 2022

What is Prader Willi Syndrome?

Prader Willi Syndrome is a genetic disorder resulting from an abnormality of chromosome 15 such as a loss of active genes. In most cases (70%) the paternal copy is missing and in some cases (25%), will exhibit two maternal copies of Chromosome 15. The genetic disorder was initially described by John Langdon Down and was named after Drs. Andrea Prader, Heimrich Willi and Alexis Labhart in 1956 and is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

During childhood, individuals diagnosed with Prader-Willi Syndrome tend to eat constantly leading to obesity and for some, type 2 diabetes will develop. This complex disorder affects appetite,growth, metabolism, cognitive functioning and behavior.

Signs and Symptoms

People with Prader-Willi Syndrome (PWS) tend to never feel full (hyperphagia) which leads to constant eating. Signs in infants include, problems with strength, coordination and balance. Often there are feeding problems at birth, delayed speech and gross motor development. Children may be born with almond-shaped eyes and undeveloped sexual organs. Cognitive disabilities and developmental delays may also be present.

As children began to grow, constant craving for food often leads to behavior challenges including hoarding food, eating frozen food and food left in the garbage causing controlling or manipulative behavior.

Medical Issues

Medical concerns may include the following:

  • Sleep Apnea
  • Respiratory/Breathing
  • High pain tolerance
  • Severe stomach illness
  • Difficulty with vomiting reflex
  • Excessive appetite
  • Binge eating
  • Eye problems
  • Choking
  • Hypothermia
  • Leg Swelling
  • Consuming unsafe items
  • Negative reactions to medications

The Foundation for Prader Research puts out daily fact sheets during awareness month. You can subscribe here. Download here for a fact sheet.

#praderwillawarenessmonth

Is Williams Syndrome the Same as Down Syndrome?

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Published by: Medicinet.com

What is Williams syndrome?

Williams syndrome is a genetic disorder that affects approximately one in 25,000 births. The syndrome is named for Dr. J.C.P. Williams, who first diagnosed the condition. He saw a pattern in children at his hospital receiving treatment for cardiovascular problems. These children shared traits like similar facial features and an unusually friendly and outgoing demeanor.

Williams syndrome is also called:

  • Beuren Syndrome
  • Early Hypercalcemia Syndrome with Elfin Facies
  • Elfin Facies with Hypercalcemia
    • Hypercalcemia-Supravalvar Aortic Stenosis
    • WBS
    • Williams-Beuren Syndrome
    • WMS

    What is down syndrome?

    Of all chromosomal conditions, Down syndrome is the most common with one in 700 babies diagnosed with Down syndrome. Most people are born with

    46 chromosomes, but those with Down syndrome have an extra copy of chromosome 2.

    While the physical features and behaviors are very similar, there are three different types of Down syndrome: Click here to read the rest of the story.

What is the Sensory Processing Disorder ICD-10 Code?

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Published by: Autism Parenting Magazine
Written by: Yolande Loftus

Obtaining reimbursement for the treatment of sensory processing disorder may be tricky when a billable code to specify the diagnosis is a requirement. Certain classification systems may not even recognize the disorder—is the ICD-10-CM the code that legitimizes sensory processing disorder?

Sensory processing disorder (SPD) has an almost ghost-like presence in the medical world. Some doctors—mostly conventional—simply do not believe it is or should ever be a distinct disorder. Others seem almost frightened when parents mention their child’s meltdown triggered by the sound of a hoover.

With a mountain of evidence spelling out how just how severely sensory processing disorder affects children, why is there still so much scepticism? Some believe the exclusion of sensory processing disorder as a separate diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013) may be behind some of the doctors’ persistent doubts.

The DSM-5 is used by professionals, mainly in the US, to diagnose mental disorders. The disorder not receiving it’s own listing in this influential manual may have far reaching consequences for treatment and access to appropriate interventions.

But what about international standards and classifications of diseases and health conditions? At first glance The World Health Organization’s International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) seems a little more inclusive of sensory processing conditions.

A diagnostic debate

The ICD-10-CM classification system refers to “Sensory integration disorder” as an “Approximate Synonym” under the F88 code: a billable/specific code that could be utilized to indicate a diagnosis for reimbursement purposes.

Does this legitimize sensory processing disorders, and does it mean the condition deserves a separate medical diagnosis? Many doctors believe sensory processing issues merely form part of the symptoms of recognized conditions and disorders like autism and attention deficit hyperactivity disorder (ADHD). Doctors along with researchers argue that there is simply not enough proof to confirm the existence of the condition according to scientific standards.

Such arguments do create a bit of a chicken and egg situation: if the condition is not legitimized will expensive clinical studies be funded and undertaken? And without such studies how will SPD ever be deemed worthy of a distinct and official medical diagnosis? Click here to read the rest of the story.

Learning Disability Factsheet

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there are statistics that show there are different types of learning disabilities

download here

Disorders Similar to Autism

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Published by: Autism Parenting Magazine
Written by: Andreas RB Deolinda

Autism spectrum disorder (ASD) is a condition recognized by its heterogeneity in associated symptoms. So much so that every individual on the autism spectrum experiences a variety of symptoms different to the next person.

Autism is categorized by symptoms such as social interaction and social communication difficulties, restricted and repetitive patterns of behavior, interests, or activities as per the Diagnostic and Statistical Manual of Mental Disorders (DSM-V); other symptoms include sensory sensitivity and atypical behavior.

Due to the many different characteristics of autism, some conditions resemble autism spectrum disorders due to similarities in traits. This article aims to provide an overview of autism spectrum disorders and other pervasive developmental disorders that are found to be similar in symptoms, and break down their differences. In addition, it will highlight comorbid disorders that are commonly associated with ASD.

The article aims to provide parents of autistic children with an understanding of these conditions. It should also be beneficial for parents seeking answers for some symptoms experienced by their children.

Assessing autism and other disorders

It is advisable that children who may show symptoms of ASD be referred to multidisciplinary assessments; this helps to ensure that comprehensive assessments are done to differentiate autism spectrum disorders from other conditions with overlapping symptoms. The series of comprehensive assessments that are used to determine a particular diagnosis are called test batteries. Assessments should consider doing thorough analysis of developmental and health history. Click here to read the rest of the story.

Gastrointestinal Issues in Autism Spectrum Disorder

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Introduction

The author reviews and discusses G.I. issues found in autistic individuals including the effects of G.I. abnormalities on behavior issues as well as medical issues.

Findings

  • Historically, 7 out of the 11 children that Leo Kanner described in his study included children having eating/feeding problems.
  • The most common problems include chronic constipation, diarrhea and abdominal pain.
  • Gastroesophageal reflux, bloody stools, vomiting and gaseousness are also elevated in some individuals diagnosed with autism.
  • Continued research is needed in this area to better understand the correlation.

 

Reference

Hsiao, E. (2014). Gastrointestinal Issues in Autism Spectrum Disorder. Harvard Review of Psychiatry. 22(2) 104-111

Dyslexia Facts and Statistics Download

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The following information is on dyslexia and the states in the United States. Down load here

What to know about autism discrimination in the workplace

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Published by: Medical News Today
Written by: Nicole Washington

Awareness of autism and its symptoms has grown in the past decade. However, many individuals still face autism discrimination in the workplace.

Autism, also called autism spectrum disorder (ASD), may mean an individual experiences social awkwardness, difficulty communicating, or difficulties understanding people’s emotions and points of view, to name just a few symptoms.

Legally, employers in the United States cannot discriminate against an individual because they have a disability. As per this law, employers cannot refuse to hire qualified, capable job candidates because they have autism.

That said, for individuals with autism, the workplace can still be challenging to navigate. Employers must understand how to treat employees with autism, and accommodate them and their needs.

Keep reading to learn more about autism discrimination in the workplace, including the rights of autistic people, some examples of reasonable adjustments employees can make, and some tips on how to deal with autism discrimination at work.

According to the U.S. Equal Employment Opportunity Commission (EEOC), discrimination means treating someone differently or less favorably for a specific reason, such as a disability.

Discrimination can take place anywhere, including in school, public areas, or the workplace. The EEOC protects against discrimination, including autism discrimination in the workplace.

ASD is a developmental condition that can affect a person’s communication, behavior, and interactions with others. According to the Centers for Disease Control and Prevention (CDC), doctors in the U.S. diagnose around 1 in 54Trusted Source children with ASD. ASD is more than four times as common in boys than girls. Click here to read the rest of the story.

What is a Disability?

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According to the Americans with Disabilities Act, a disability is defined as if she/he has a physical or mental impairment that substantially limits one or more major life activities, a record of such impairment, or is regarded as having an impairment.

According to the Centers for Disease Control (CDC), 61 million adults in the United States live with a disability.

  • The percentage of people living with disabilities is highest in the south.
  • 13.7% have serious difficulties walking or climbing stairs
  • 10.8% have serious difficulty concentrating, remembering, or making decisions
  • 6.8% difficulty doing errands alone
  • 5.9% are deaf or have difficulty hearing
  • 4.6% are blind or having difficulty seeing
  • 3.7% have difficulty dressing or bathing independently
  •  2 in 5 are adults age 65 years or older
  • 1 in 4 women have a disability
  • adults living with disabilities are more likely to have obesity, smoke, have heart disease and diabetes.

The U.N. Convention on the Rights of Persons with Disabilities adopts the social model of disability that recognizes:

  • That disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others and;
  • Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

According to the World Report on Disability, about 15% of the world/s population lives with some form of disabilities,. of whom 2-4% experiences significant difficulties in functioning. A disability can be visible or invisible.

Causes

A disability can be occur before, during or after birth. Before birth could be a genetic problem, chromosomal , infection or exposure to chemicals. During birth can be due to lack of oxygen and after ranges from seizures, car accidents, drownings, strokes, etc.

Types

Chromones/Genetic

Neurodevelopmental

Physical Impairments

Psychiatric

Chronic Disabilities

Sensory Disabilities

Cognitive Disabilities

Medical Conditions

Invisible

Also see:

About Special Needs;

Purple Day for Epilepsy

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Date: March 26, 2022

March 26 is Purple Day is an international grassroots efforts dedicated to increasing awareness about epilepsy worldwide. People om countries around the world wear purple and host events in support of epilepsy.

Epilepsy is a neurological disorder which causes seizures through electrical impulses occurring in the brain. It is the fourth most common neurological disorder. Epilepsy affects 50 million people worldwide. In the U.S., 1 out of 26 people are affected.

A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two unprovoked seizures occurring greater than 24 hours apart.
  2. One unprovoked seizure and after two unprovoked seizures occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome.
Seizures

A seizure is caused by a burst of abnormal activity in the brain. With a seizure, a person has change in awareness, behavior, body movement or sensation. A seizure can last from a few seconds to a few minutes. Seizures can take on many different forms and affect people in different ways.

Auras

Auras are often describes as a warning before the occurrence of a seizure. Not everyone experiences an aura. Some have described it as a change in feeling, sensation, thought or behaviors. this may include:

  • An overpowering smell.
  • Nausea or indigestion.
  • A rising/sinking feeling in the stomach.
  • a sleepy/dreamy feeling.
Types of Seizures

Generalized Tonic Clonic Seizures. Involves the entire brain. May also be referred to as a grand mal seizure. This occurs when abnormal electrical activity affects all or most of the brain. often the body will stiffen and then the person will lose consciousness and then the body will shake due to uncontrollable muscle contractions.

Absence Seizure– A brief loss of consciousness or awareness. It generally last only seconds and mainly occurs in children. Signs may include a blank stare, lip smacking and repeated blinking, chewing or hand movement.

Focal Seizures– The burst of electrical activity is contain in one part of the brain. In a simple focal seizure, you may have muscular jerks or strange sensations in one arm or leg. The person does not lose consciousness or awareness.

Causes
  • brain trauma
  • genetics
  • stroke
  • tumors
  • brain infections
  • head injury.
Risk Factors
  • Babies who are born small for their age
  • Babies who have seizures in the first month of life
  • Cerebral Palsy
  • Autism Spectrum Disorders
  • Conditions with intellectual and developmental disabilities
  • Family history of epilepsy (febrile)

Prevalence:

  • More people live with epilepsy than autism, spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy combined.
  • You can’t swallow your tongue during a seizure. It is physically impossible.
  • You should never force something into the mouth of someone having a seizure.
  • Don’t restrain someone having a seizure.
  • Epilepsy is not contagious .
  • Anyone can develop epilepsy.
  • Epilepsy is not rare.
  • 1 in 26 Americans will develop epilepsy in their lifetime.4An estimated 3 million Americans and 65 million people worldwide live with epilepsy.
  • In 2/3 of patients diagnosed with epilepsy, the cause is unknown.
  • Up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures). (SUDEP) and other seizure-related causes such as drowning and other accidents.
  • SUDEP accounts for 34% of all sudden deaths in children.
  • Epilepsy costs the U.S. approximately 15.5 billion each year.
  • A seizure is a transient disruption of brain function due to abnormal and excessive electrical discharges in brain cells.
  • Epilepsy is a disease of the brain that predisposes a person to excessive electrical discharges in the brain cell.
  • It is diagnosed when 2 or more unprovoked seizures have occurred.
  • It must be at least 2 unprovoked seizures more than 24 hours apart.
  • About 14% have simple partial seizures.
  • 36% have complex partial seizures.
  • 5% have tonic-clonic seizures.
  • Seizures can be caused by head trauma, stokes, brain tumor and a brain infection.
  • Causes are unknown in 60 to 70% of cases.
  • The prevalence is 1% of the U.S. population.
  • Approximately 2.2 to 3 million in the U.S. have seizures.
  • It affects all ages, socioeconomic and racial groups.
  • Incidents are higher in children and older adults.
  • Seizures can range from momentarily blanks to loss of awareness
  • Almost 150,000 people in the U.S. develop epilepsy every year.
  • No gender is likely to develop than others.
  • 1/3 of individuals with autism spectrum disorders also have epilepsy.
  • The prevalence of epilepsy in people with an intellectual disability is higher than the general population.

Website: Purple Day – Supporting Epilepsy Around The World!

Resources

Epilepsy and Autism: What You Need To Know – Special Needs Resource and Training Blog

Intellectual Disabilities And Epilepsy – Special Needs Resource and Training Blog

 

World Syndrome Day

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Date: March 21, 2022

World Down Syndrome Day is an annual celebration and global awareness day officially observed by the United Nations since 2012. March 21 was selected to signify the uniqueness of the 21st chromosome which causes Down syndrome.

Facts and Statistics

Down syndrome is a genetic disorder that develops when there is an abnormal cell division resulting in an extra copy of chromosome 21.

Facts
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
  • Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
  • Down syndrome occurs in people of all races and economic levels
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
  • A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  • People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses

Resources

Down Syndrome and Sleep Apnea

Signs of Autism Spectrum Disorder in Children with Down Syndrome

Down Syndrome and Obesity

Down Syndrome and Heart Disease

Trisomy Syndrome Facts and Statistics

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Trisomy 21 (Down Syndrome)
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
  • Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
  • Down syndrome occurs in people of all races and economic levels
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
  • A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  • People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses

The incidence of Down syndrome is between I in 1000 to 1 in 1,100 live birth worldwide.

  • Each year, approximately 3,000 to 5,000 children are born with Down syndrome.
  • 60-80% of children with Down syndrome having hearing issues
  • 40-45% of children with Down syndrome have congenital heart disease

 

Trisomy 18 (Edwards Syndrome)
  • It is also known as Edwards Syndrome
  • It is a condition caused by an error in cell division
  • An extra chromosome in 18 develops
  • Occurs in 1 out of every 2500 pregnancies in the United States
  • It is 1 in 6000 live births
  • Only 50% of babies who are carried to term will be born alive
  • Children are often born with heart defects
  • Features include a small head, small jaw, clenched fists and severe intellectual disabilities
  • It is named after John Hilton Edwards, who first described the syndrome in 1960
  • It affects different organ systems
Trisomy 13 (Patau Syndrome)
  • Trisomy 13 is the presence of an extra chromosome 13 in all cells
  • Mosaic trisomy 13- the presence of an extra chromosome in some of the cells
  • Partial trisomy 13- the presence of a part of extra chromosome 13 in the cells
  • Occurs in about 1 out of every 5,000 to 16,000 newborns
  • The brain is mostly affected
  • Most children tend to have a heart defect
  • Was first described in 1657
  • 44% of babies born die within the first month of birth
  • In the first month of birth, 69% die by 6 months
  • Only 18% reach their first birthday
  • It is not inherited
  • Are usually born with an intellectual disability.

Trisomy Awareness Month

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Date: March 1- March 31, 2022

March is Trisomy Awareness Month.

Prevalence:

  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
  • Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
  • Down syndrome occurs in people of all races and economic levels
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
  • A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  • People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses

The incidence of Down syndrome is between I in 1000 to 1 in 1,100 live birth worldwide.

  • Each year, approximately 3,000 to 5,000 children are born with Down syndrome.
  • 60-80% of children with Down syndrome having hearing issues
  • 40-45% of children with Down syndrome have congenital heart disease
Life Expectancy
  • The life expectancy increased slowly from 1900 to 1960 (by 89%) but rapidly grew from 1960 to 2007 (456%)
Life Expectancy by Race
  • Whites with Down syndrome in the United States had a median death at the age of 50 in 1997 compared to 25 years for African Americans and 11 for people of other races

Resources

10 Important Facts On Trisomy 18

Down Syndrome Timeline

Mosaic Down Syndrome

National Developmental Disabilities Awareness Month

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March is National Developmental Disabilities Awareness Month. The purpose is to help raise awareness about people with intellectual and developmental disabilities.

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

  • Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
  • 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
  • Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
  • Prevalence of autism increased 289.5%
  • Prevalence of ADHD increased 33.0 %
  • Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
  • Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
  • 10% of Americans have a family member with an intellectual disability.
  • Intellectual disabilities are 25 times more common than blindness.
  • Every year 125,000 children are born with an intellectual disability
  • Approximately 85% of the intellectual disability is in the mild category.
  • About 10% of the intellectual disability is considered moderate
  • About 3-4% of the intellectual disability population is severe.
  • Only 1-2% is classified as profound.

Resources

Website: Developmental Disabilities Awareness Month Archives – The Arc

What You Should Know About GERD and Developmental Disabilities – Special Needs Resource and Training Blog

National Cerebral Palsy Awareness Month

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Date: March 1- March 31, 2022

March is National Cerebral Palsy Awareness Month and is used to bring awareness and to educate the general public.

What is Cerebral Palsy?

Cerebral Palsy is a collection of motor disorders resulting from damage to the brain that can occur before, during and after birth. Congenital cerebral palsy indicates that a person developed cerebral palsy at birth which is the case of the majority of people with cerebral palsy. According to the Centers for Disease Control and Prevention (CDC), Cerebral Palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood. It is estimated that an average of 1 in 345 children in the U.S. have cerebral palsy. For many years, it was thought cerebral palsy was due to lack of oxygen. Studies show this only accounts for 19% of all cases.

Prevalence and Characteristics
  • Around 764,000 people in the United states have at least one symptom of cerebral palsy
  • Around 10,000 babies are born each year with cerebral palsy
  • Boys are diagnosed more often than girls
  • Cerebral palsy is the mot commonly diagnosed childhood motor disability in the United States
  • Over 77% of children with cerebral palsy have the spastic form
  • More than 50% of all children with cerebral palsy can walk independently
  • African American children with cerebral palsy are 1.7 times more likely to need assistance with walking or be unable to walk at all
  • Around 41% of babies and children with cerebral palsy will have limited abilities in crawling, walking and running.
  • Around 41% children with cerebral palsy in the United states have some form of a cognitive disorder
  • Behavior problems are common in children with cerebral palsy including social skills and anger issues.
  • Seizures are a common associate disorder of cerebral palsy and can range from mild to extreme severe.
  • There is no known cure
What Causes Cerebral Palsy?

Studies show that about 10 to 20 percent of children with cerebral palsy acquire the disorder after birth. This includes through infections, jaundice, RH incompatibility and severe oxygen shortage in the brain.

Types of Cerebral Palsy

Ataxic- indicates the muscle tone is too low or too loose

  • affects 5 to 10 percent of people with cerebral palsy
  • movements are unsteady and shaking
  • have difficulty making quick movements

Spastic- refers to the inability of  muscle to relax

  • is the most common type of cerebral palsy
  • 70-80% of people have spastic cerebral palsy
  • will have difficulty moving from one position to another

Athetoid-uncontrolled twisting movements

  • Affects 10 to 20% of people with cerebral palsy
  • often have difficulty holding themselves in an upright position
  • muscles move involuntarily causing limbs to twitch

Classifications

Hemiplegia- The inability to move the arm and leg on one side of the body.

Diplegia-The inability to move either both arms or both legs.

Quadriplegia- A type of cerebral palsy that affects all limbs on both sides of the body

Monoplegia- A type of cerebral palsy that affects only one limb.

Resources

 

International Wheelchair Day

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Date: March 1, 2022

International Wheelchair Day is held annually on March 1 to honor the positive impact wheelchair users accomplish everyday. The purpose is to bring awareness to the millions of people who need wheelchair.

International Wheelchair Day was founded by Steve Wilkinson who was born with Spina Bifida.

Website: International Wheelchair Day | An annual celebration of the Wheelchair

 

An Overview of Cri du Chat Syndrome

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Published by: Verywell Health
Written by: Abby Norman

Cri du Chat Syndrome (French for “cat cry”) is a rare chromosomal disorder caused by missing or deleted portions of chromosome 5. Infants who are born with the syndrome often have a high-pitched cry that sounds like a cat, hence the condition’s name. Since the condition occurs due to missing portions of the short arm (p) of chromosome 5, Cri du Chat is also known as 5p- (5p minus) syndrome.

Close-up of a crying baby.
Dimitri Otis/Getty Images

Symptoms

The key physical characteristics and symptoms of Cri du Chat syndrome are caused by missing or deleted genes in the small arm (p) of chromosome 5. Researchers suspect that the specific set of symptoms associated with Cri du Chat, and the severity of those symptoms, is linked to the size and location of the deleted or missing portion of the chromosome.

Like other chromosomal disorders, the symptoms and severity of the condition vary from person to person. However, there are a few key manifestations of the condition that are noticeable from birth. These hallmark features include:

  • Low birth weight
  • Poor sucking reflex
  • Slow growth or failure to thrive
  • A high-pitched, mewling cry that sounds like a cat
  • Low muscle tone

While they may not have all of the features, many newborns with Cri du Chat have distinct physical characteristics, including:

  • A small head (microcephaly) and jaw
  • An abnormally round face
  • Malocclusion of the teeth
  • Wide-set, downwardly slanted eyes
  • Extra skin folds around the eyes
  • Low-set ears
  • “Webbing” of fingers and toes (syndactyly)
  • Cleft lip or cleft palate

As children with the condition grow up, they may begin to show and experience a spectrum of symptoms related to Cri du Chat, as well as other disorders commonly found in people diagnosed with the condition, including:

  • Motor, cognitive, and speech delays
  • Moderate to severe intellectual disability
  • Psychomotor disability
  • Seizures
  • Autism-like behaviors, such as hand flapping, rocking, and noise sensitivity
  • Scoliosis
  • Congenital heart defects (around 15–20 percent of patients)
  • Hernias
  • Behavioral issues such as tantrums and poor attention/impulse control
  • Walking with a slow, guarded gait or the need for mobility aids, including wheelchairs
  • Self-destructive behaviors like head banging and skin picking
  • Recurrent infections (particularly respiratory, ear, and gastrointestinal)
  • Nearsightedness
  • Constipation
  • Kidney or urinary abnormalities
  • Premature graying of hair
  • Trouble sleeping
  • Toilet training issues

Causes

Cri du Chat syndrome was first described in 1963 by a French pediatrician named Jérôme Lejeune. Lejeune is most well-known for discovering the genetic basis of trisomy 21 (Down syndrome). Click here to read the rest of the story

Genetic Syndromes Associated with Congenital Heart Disease

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Introduction

Studies show that approximately 30% of congenital heart disease is related to genetic syndromes. awareness of these genetic syndromes can help in the planning of the individual’s care management.

The following are common genetic syndromes associated with congenital heart disease:

Down Syndrome. Studies show that congenital heart disease occurs in 40-50% of individuals with Down syndrome specifically atrioventricular canal defects. It is suggested that echocardiograms should be performed at diagnosis.

Turner Syndrome. Heart issues are common in 24-45% of girls diagnosed with Turner syndrome. The most common abnormalities are bicuspid aortic valve (16%). The researcher suggests that all Turner patients should have a baseline cardiologic exam.

22q11.2 deletion Syndrome.  In most cases, congenital heart defects is the cause of death. It is recommended that both an EKG and and EEG be done at the time of the diagnosis with ongoing follow-up.

Williams Syndrome. Approximately 75-80% of individuals born with Williams syndrome have a cardiac malformation. Hypertension is often developed in about 50% of people with Williams syndrome and continues to increase overtime.

Reference

Ko, JM (2015). Genetic Syndromes Associated with Congenital Heart Disease.  The Korean Society of Cardiology. 45 (5) 357-361

Feeding Tube Awareness Week

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Date: February 8-12. 2022

The Feeding Tube Awareness Week was created by the Feeding Tube awareness Foundation organization to increase awareness of feeding tubes and enteral feeding. The first awareness week was launched in 2011. The mission of Awareness week is to promote the positive benefits of feeding tubes as life saving medical interventions. Each year, the third week of February is designated as Feeding Tube Awareness Week.

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent .

Reasons to use a feeding tube
The student or individual may have a swallowing disorder or dysphasia. This means there is an increased risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.
Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

The following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 Deletion Syndrome

Angelman Syndrome

Aspiration

Cerebral Palsy

CDKL5 Disorder

Cornelia de Lange

Cri Du Chat Syndrome

Down Syndrome

Dravet Syndrome

Dysphasia

Edwards Syndrome

Fetal Alcohol Syndrome

Fragile X Syndrome

Hydrocephalus

Lennox-Gestaut Syndrome

Microcephaly

Ohtahara Syndrome

PPD- Not Otherwise Specified

Turner Syndrome

Trisomy 18

Spastic Diplegia

Traumatic Brain Injury

West Syndrome

Williams Syndrome

Resources:

Book Review: My belly Has Two Buttons

Updated 12/29/23

International Day of Acceptance

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Date: January 20, 2022

The International Day o Acceptance was founded by Stevie Hopkins in memory of his sister, Annie in 2010. Annie Hopkins along with her brother Stevie, founded 3E Love, a social entrepreneurial business that is disability owned and operated. 3E Love and the wheelchair heart has become an international brans and a symbol of love, strength, and hope.

International Day of Acceptance recognizes that people with disabilities have social rights and should be treated with respect.. Acceptance Day purpose is to focus on recognizing a disability without trying to change it. Disability acceptance is recognizing that a disability is part of the person and cannot be separated from the person.

Demographic Characteristics, Health Conditions, and Residential Service Use in Adults with Down Syndrome in 25 States

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Introduction

The study describes the demographic characteristics and health conditions of individuals with Down syndrome living in a residential setting. The purpose of the study is to analyze health conditions, and impairments across the adult life span.

Methodology

The data was collected from the National Core Indicator Survey from 25 participating states. The sample included 1,199 individuals diagnosed with Down syndrome.

Findings

The researchers concluded the following:

  • Adults diagnosed with Down syndrome comprise of 10 percent of the population using intellectual and developmental disability services in their states.
  • Similar to people diagnosed with an intellectual and developmental disability, people with Down syndrome impairments increased as they grow older.
  • Alzheimer disease is still prevalent among people with Down syndrome.
  • Adults with Down syndrome were more likely to report being overweight. This is especially true for women.
  • People with Down syndrome are more likely to live at home with their parents than residing in a residential facility.

 

Reference

Stancliffe, R.J.; Lakin, K.C.; Larson, S.A.; Engler, J.; Taub, S.; Fortune, J.; Berkshadsky.J. (2012). Demographic Characteristics, Health Conditions, and Residential Service Use in Adults with Down Syndrome in 25 States. Intellectual and Developmental Disabilities. 50(2), 92-108. DOI:1352/1934-9556:50.2.92

World Braille Day

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Date: January 4, 2024

World Braille Day is an international day sponsored by the United Nations to celebrate the importance of braille and to celebrate the birthday of Louis Braille, the creator of the braille writing system.

The first World Braille day was celebrated on January 4, 2019. The proclamation was signed November, 2018 by the United Nations General Assembly.

Louis Braille was born on January 4, 1809 near Paris, France while playing with his father’s tools at the age of 3, he lost his sight and at the age of 10, was sent to the Royal Institute for Blind Youth. Inspired by Charles Barbier night reading system at the age 15, Louis invented the braille system which became more widely used in 1854. The braille system was quickly adopted by other schools in France and would eventually be used worldwide.

Updated 12/29/23

What Is Spastic Cerebral Palsy? The Most Common Subtype

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Published by: Verywell Health
Written by: Heidi Moawad

Cerebral palsy is a lifelong condition characterized by impaired motor control due to congenital (from birth) brain defects, often with other associated symptoms. There are four different types of cerebral palsy, and spastic cerebral palsy, also called hypertonic cerebral palsy, is the type that’s diagnosed in 80% of people who have cerebral palsy.

What Is Spastic Cerebral Palsy? 

Spastic cerebral palsy is characterized by diminished motor control and spasticity of the muscles. Spasticity is tightness and rigidity of the muscle, sometimes with a jerky component. Contractures can develop in the affected muscles, resulting in a tight, fixed position of a limb that is difficult to move, even passively.

Spastic cerebral palsy can involve paresis (motor weakness) or plegia (paralysis) of the affected muscles. Three subtypes of spastic cerebral palsy are defined by which parts of the body are affected.

You or your child may have:2

  • Spastic hemiplegia/hemiparesis affecting one limb or the arm and leg on one side of the body
  • Spastic diplegia/diparesis, affecting both legs
  • Spastic quadriplegia/quadriparesis affecting all four limbs

The main difference between spastic cerebral palsy and the other defined types—ataxic cerebral palsy (predominated by coordination and balance problems) and dyskinetic cerebral palsy (predominated by abnormal involuntary movements)—is that spasticity is a predominant symptom of spastic type.

Symptoms 

The symptoms of spastic cerebral palsy can affect one or both sides of the body and might involve just one limb. Impaired voluntary movements, spasms, jerking, tremors, and muscle tightness can be present. In addition to motor effects, spastic cerebral palsy can also cause cognitive deficits, vision impairment, diminished hearing, and seizures.  The condition affects each of the different muscle groups in the body in specific ways. Click here to read the rest of the story

The Success Spectrum: Neurodiversity In The Workplace

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Published by: Forbes Magazine
Written by: Evan Ramzipoor

A neurodivergent woman in tech, Whiting has written numerous pieces and given myriad talks on neurodiversity in the workplace. In an interview with ServiceNow, she shared her perspective on hiring and retaining neurodivergent talent, the power of neurodiversity in cybersecurity, and what neurotypical people often get wrong in their efforts diversify the workplace.

How did you get started in cybersecurity?

I’m a natural researcher and a reflective thinker who came from a poorer socioeconomic background: six of us in a three bedroom house. Because of that, I always wanted to be the best version of me possible. I think that’s why I’ve ended up with such a broad range of careers.

At one stage, I was an award-winning jewelry designer who owned multiple jewelry stores and served as the chair of a jewelry guild. At another stage, I collaborated with a group of women on a book called Extraordinary Women, which became an Amazon bestseller. Around the same time, my ex-husband and I separated, and I quit the jewelry business.

I came back to my hometown, where a friend introduced me to Ian, Titania’s founder. He’s very much an innovator, whereas I’m a natural researcher and strategist. I joined the company, became the “Roy Disney” to his “Walt” and we later married. The company let me focus on my passions, one of which is inclusion. This led to an invitation that changed my life. Click here to read the rest of the story.

ADHD from childhood to adulthood: Can you grow out of it.

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Published by: PsychCentral
Written by: Jeffrey Ditzell

Hyperactivity and inattention can be normal parts of childhood. When those symptoms are persistent and interfere with daily life, your child may be living with ADHD.

Attention deficit hyperactivity disorder (ADHD) affects approximately 6.1 millionTrusted Source U.S. children from ages 2 to 17 years. It’s a mental health condition with symptoms of impulsivity, hyperactivity, and inattention.

ADHD begins at an early age. If you’ve been diagnosed with ADHD as an adult, you’ve most likely lived with it since you were a child.

ADHD also changes with age. For some children, this means they may “grow out” of ADHD as primary symptoms decrease.

Most children with ADHD will no longer meet the diagnostic criteria as adults, but just under one-thirdTrusted Source of them do. Meanwhile, research reports that around 1 in 50 adults live with ADHD, though the number could be higher.

How ADHD changes: From childhood to adulthood

ADHD symptoms can be different during the various stages of your life. What you experience as a child can change when you hit your teens and adulthood.

ADHD in children

In very young children, hyperactivity and impulsivity are the most common symptoms of ADHD.

Young children are more likely to be active — even while learning — and this can make action-based ADHD behaviors more obvious than those of inattention. Click here to read the rest of the story

Pica and Autism: What you should know

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Published by: Autism Parenting Magazine
Written by: Claire Delano

If you’re a parent, you’ve probably seen your child put something in his/her mouth that isn’t food. During the mouthing stage before the age of two, it’s normal for curious babies to try and chew on just about everything. But when children try to actually eat non-food items past this stage of development, they may have an eating disorder known as pica (pronounced “pie-kuh”).

Pica is a dangerous, potentially life-threatening behavior for anyone. Depending on what objects are ingested, young children may face nutritional deficiencies, choking, poisoning, parasites, blood infections, intestinal blockages or perforations, etc. These problems can require hospital visits, surgery, and may even cause death.

In this article, we’ll explore what exactly pica is, what may cause it, and how you can help your child with autism if it’s something he/she struggles with. Click here to read the rest of the story.

Hyposensitivity among Autistic Individuals

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Published by: Autism Parenting Magazine
Written by: Yolande Loftus

When searching for information about your autistic child’s sensory challenges you may find many articles about hypersensitivity. But what about hyposensitivity, and the accompanying sensory seeking behavior of a child who finds the world an underwhelming place?

As research discovers more about the autistic brain, we can’t help but marvel at some of the skills and strengths that underlie the neurodivergent mind. One the other hand, research is also delving deeper into just how the deficits and symptoms of autism may lead to difficulties experienced in everyday life.

For those on the spectrum, sensory difficulties may be some of the most challenging symptoms to manage. According to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013) hyper- or hyporeactivity to sensory input is one of the ways in which restricted, repetitive patterns of behavior may manifest.

Another core impairment of autism is communication. When you consider the reality of an autistic child’s life, with sensory difficulties and deficits in communication, it may be deduced that he/she might experience sensory challenges and lack the necessary communication skills to express such discomfort (for example a lack of tactile stimuli) with parents or caregivers. Click here to read the rest story.

Autism Sensory Difficulties and How to address Them

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Published by: Durham Region Autism Services

People with Autism Spectrum Disorder (ASD) typically have difficulty processing sensory information such as sounds, sights, and smells. This is usually referred to as having issues with “sensory integration”, or having sensory sensitivity, and is caused by differences in how the brain of a person with ASD understands and prioritizes the sensory information picked up by the body’s many sensory receptors. When this breakdown in communication becomes too intense, the person with ASD may become overwhelmed, anxious, or even feel physical pain. When this occurs, some with ASD may act out.

The over and under-sensitivity ASD people experience may affect some or all of the following seven senses:

Sight

Including seeing objects as darker than they really are, blurred central vision, having poor depth perception (resulting in clumsiness), and distorted or fragmented images.

Sound

Imbalanced hearing (hearing sounds only in one ear), may either enjoy loud noises or be very agitated by them, may have difficulty cutting out background noise (affecting concentration), sounds may be distorted. These difficulties may also contribute to balance issues.

Touch

A person with ASD may either crave touch (and not know how much to apply, such as holding a person too tightly) and have a high pain threshold, or shun touch (even common gestures of affection, such as hugs) and struggle with certain sensations, such as those produced by rough fabrics, hair brushing, etc.

Taste

Some with ASD may crave strong tasting foods (such as very spicy foods) or even go so far as to try to eat non-edible substances like Play Dough, while those who are hypersensitive to taste will shun all but the blandest foods, and may dislike foods with anything but a smooth texture.

Smell

Some people with ASD may have no sense of smell and remain unaware of strong odours (leading them to rely on oral cues; they may taste things to get a better sense of them), while others may find common smells (such as from deodorants, lotions, shampoos, and perfumes) too strong to bear. For this reason, they may be extremely averse to going to the bathroom.

Balance (‘vestibular’)

People with ASD may rock back and forth so as to get enough input on where they are situated, as they lack a sense of balance. They may have difficulties with sports, particularly anything gymnastic where the head is removed from an upright position. They may be more prone to car sickness than those who lack ASD.

Body awareness (‘proprioception’)

As people with ASD struggle to orient their bodies properly in space, they may stand too close to others, have a hard time navigating rooms or moving around obstructions (including people), experience difficulties with fine motor skills, or experience Synaesthesia (a condition where senses are “confused”, i.e. one will hear or taste a colour).   Click here to read the rest of the story

Puberty and Autism: An unexplored transition

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Published and written by: Spectrum News

Henry’s early years in school had been rocky enough. The boy had been diagnosed with autism at age 7. He struggled to control his emotions and process sensory information in his Tennessee classroom. But by the time Henry was 10, his parents had figured out ways to ease these issues with therapy and medication.

Then puberty hit. Henry became moody and more sensitive. A perceived slight from a classmate could trigger an emotional outburst. “He couldn’t bounce back,” says his mother, Elisa. “He was upset for the rest of the day.” (We withheld Henry and Elisa’s last name to protect their privacy.)

Henry’s outbursts became harder and harder to manage as the small boy shot up to nearly 6 feet tall. Last year at age 13, as he was adjusting to new medication, his irritability and compulsive behaviors got so bad that Elisa and her husband pulled Henry out of school for two weeks. “He was so sad,” Elisa recalls. “It was awful.” Adding to the pandemonium was Henry’s burgeoning sexuality, complicated by his challenges with social skills. He would tell a raunchy joke, not intuiting that his parents would find it offensive. He might ask a girl he hardly knew to be his girlfriend. “I hope that we can just finish out this puberty ride,” Elisa says. “Because it is a roller coaster.” Click here to read the rest of the story.

Finding Strengths in Autism

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Published by: Spectrum News
Written by: Rachel Nuwer

t 21, Dawn Prince-Hughes was homeless and destitute when she found her calling — at a zoo in Seattle, Washington. It was 1985. Prince-Hughes had fled to Seattle from rural Montana, where she had feared for her life after coming out as gay. She did not yet know she was autistic — she would be diagnosed with autism about 15 years later — but she knew she had trouble making friends. “I had failed miserably trying to connect with human beings,” she says. “They do not make sense to me.”

One morning, pining for nature, Prince-Hughes visited Seattle’s Woodland Park Zoo. Wandering around the enclosures, she turned a corner and saw the gorillas. “It was just an instantaneous recognition,” she says. She felt she understood them almost right away. “It was really clear to me that they were used to communicating through silence and movement, which I considered my first language, too.” She began visiting the animals every day, all day, to observe their behavior. If a staff member walked by, she pumped the employee for information. Away from the zoo, she read and watched everything she could find about gorillas. Eventually, the zoo enlisted her as a volunteer and later hired her as an assistant animal steward, caring for the animals. Click here to read the rest of the story

 

Age 6 may represent key turning point in autism

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Published by: Spectrum
Written by: Charles Q. Choi

Autism trait severity decreases from age 3 to 6 in most autistic children, but that progress then stalls for nearly three-quarters of them, according to a new long-term study.

The findings suggest that age 6 — when elementary school usually begins — is a key turning point for autistic children, when families, clinics, schools and communities can provide extra support.

“We can think about making sure these turning points turn out positively instead of negatively for kids,” says lead investigator Stelios Georgiades, associate professor of psychiatry and behavioral neurosciences at McMaster University in Hamilton, Canada.

The results jibe with a 2020 study showing that autism traits are not stable in young children with autism. But they run counter to the long-standing idea that these traits don’t typically ease with time.

“Most children with autism do show some improvement, in contrast with a lot of the literature,” says David Amaral, professor of medical psychiatry at the University of California, Davis, who led the 2020 study but was not involved in the new work. “Change in the severity of symptoms over time is more likely than ever thought before.” Click here to read the rest of the story.

What Parents Misunderstand About Executive Function

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Published by: ADDitude
Written by: Ryan Wexelblatt

A 7-year-old with ADHD has the executive functioning skills of a 4- or 5-year-old. A 13-year-old’s EF age is between 10 and 11. Your expectations for your child need to align with their EF age, and your strategies for scaffolding probably need to change accordingly. Executive functioning is a term used to describe the processes that happen in the pre-frontal cortex of the brain — its operating system. Anybody who has ADHD has lagging executive function skills. Sometimes it can appear that they do not if they are really motivated and learn how to compensate early, but essentially ADHD is lagging executive function skills. Click here to read the rest of the story.

Trader Joe’s Eyes Improved Shopping Experience For Those With Special Needs

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Published by: Disability Scoop
Written by: Shaun Heasley

Trader Joe’s is looking to make it easier for people with autism and intellectual disabilities to shop in its grocery stores.

The company said that it has partnered with the life-skills app MagnusCards to feature five different “card decks” to guide shoppers through various aspects of a visit to Trader Joe’s.

The card decks include one focused on “checking out your items” and another about “sensory experiences in the store,” among others. Each provides visual cues, step-by-step instructions and audio to walk users through tasks.

“Grocery stores can be challenging places for individuals with autism, but the basic necessity of buying food and the simple pleasure of selecting what you plan to eat is vital for all people,” said Nadia Hamilton, who was inspired by her brother with autism to create Magnusmode, which makes the free app. “Trader Joe’s MagnusCards provide support for a critical skill set that everyone needs and a fun experience that everyone deserves.” Click here to read the rest of the story.

Living with Cerebral Palsy

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Published by: Circleville Herald
Written by: Steven Collins

Cerebral Palsy is a group of disorders that affect a person’s ability to move and maintain balance and posture.

Cerebral Palsy is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.

Trevor Lane, a 2016 Logan Elm High School graduate, was diagnosed with Cerebral Palsy at a young age, but despite what doctors have said, he hasn’t let that stop him from achieving his goals and dreams.

“My doctors told my parents that I would never be able to walk or talk and I’d be in a wheelchair my whole life and if I survived, I wouldn’t make it very long,” he said. “I did survive and as I got older and stronger, I moved from a walker to crutches and then I had a surgery to stretch my hamstrings and I was able to walk on my own without any assistance. It took me six years to walk without any devices.”

Lane said he was blessed to have attended Logan Elm.

“I was never bullied; I made lots of friends,” he said. “I couldn’t have asked for a better experience there. Salt Creek is not very handicap-accessible, but all my friends and my teachers were so accommodating and that helped me.” Click here to read the rest of the story

Puberty and autism: An unexplored transition

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Published by: Spectrum

Henry’s early years in school had been rocky enough. The boy had been diagnosed with autism at age 7. He struggled to control his emotions and process sensory information in his Tennessee classroom. But by the time Henry was 10, his parents had figured out ways to ease these issues with therapy and medication.

Then puberty hit. Henry became moody and more sensitive. A perceived slight from a classmate could trigger an emotional outburst. “He couldn’t bounce back,” says his mother, Elisa. “He was upset for the rest of the day.” (We withheld Henry and Elisa’s last name to protect their privacy.)

Henry’s outbursts became harder and harder to manage as the small boy shot up to nearly 6 feet tall. Last year at age 13, as he was adjusting to new medication, his irritability and compulsive behaviors got so bad that Elisa and her husband pulled Henry out of school for two weeks. “He was so sad,” Elisa recalls. “It was awful.” Adding to the pandemonium was Henry’s burgeoning sexuality, complicated by his challenges with social skills. He would tell a raunchy joke, not intuiting that his parents would find it offensive. He might ask a girl he hardly knew to be his girlfriend. “I hope that we can just finish out this puberty ride,” Elisa says. “Because it is a roller coaster.” Click here to read the rest of the story.

Ring Chromosome 22

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According to the March of Dimes, about 1 in 150 babies are born with a chromosomal condition. Changes of the chromosome can occur through duplication, deletion or inversion.

Ring Chromosome 22 is a rare disorder which occurs when a component of the short arm and a part of the long arm are missing which join together causing to form a ring.

Prevalence

Ring Chromosome is extremely rare. There are approximately 100 known case.

Signs and Symptoms
Signs and symptoms vary based on the amount of genetic material lost and the location of the break in the chromosome. Signs and symptoms typically include, developmental delays, intellectual disabilities in the severe to moderate range, speech delay, hypotonia, unsteady gait, seizures and hyperactivity. Physical characteristics in some cases include webbed toes and a bulbous nose.
Ring Chromosome 22 and Autism

It is estimated that 30-79% of people diagnosed with Ring Chromosome 22 also displayed autistic features. In cases where Autism and Ring Chromosome 22 coexisted, it was found that autism symptoms such as mood disorders, hyperactivity, and aggression were evidenced.

Treatment

There is currently no cure for Ring Chromosome 22. The following are used as a way to manage the disorder.

  • special education
  • speech therapy
  • physical therapy
  • seizure medication.
Resources
  1. Genetics Home Reference
  2. Wikipedia

Can exercise improve cognition for people with Down syndrome? A new study aims to find out Social Sharing

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Published by: CBC
Written by: Angelina King

The Canadian Down Syndrome Society (CDSS) is partnering with a British university and a cognitive brain-training app to launch an international research study looking at a potential link between exercise and improved cognitive function for those with Down syndrome.

The study aims to prove what the CDSS says is “anecdotal evidence” that exercise can help with memory, speech, social skills and other abilities in people with Down syndrome. The charity says physical activity hasn’t been a priority because the research hasn’t been done.

“There is very little empirical evidence in this area to help support the medical community in recommending [exercise] as part of the imperatives in the treatment programs,” CDSS Toronto board member Ben Tarr said.

The study, called Mindsets, launched its pilot phase on March 21, which is World Down Syndrome Day. Researchers are looking to recruit at least 200 participants to begin the full eight-week portion next month. Click here to read the rest of the story.

Tourette Syndrome Terms You Should Know

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June is Tourette Syndrome Awareness Month.

According to the Tourette Association of America, tics are involuntary, repetitive movement and vocalizations. They are the defining feature of a group of childhood-onset, neurodevelopmental conditions known collectively as Tic disorders and individually as Tourette Syndrome.

Tics are common in childhood. The estimated prevalence of Tourette Syndrome disorder range from 3 to 8 per, 1,000 in school-aged children. Males are more commonly affected than females. Some people may have tic-free periods of weeks to months.

The following are terms related to Tourette Syndrome Disorder:

Attention Deficit Hyperactivity Disorder (ADHD)– a neurological disorder characterized by a pattern of inattention and/or hyperactivity-impulsivity that disrupts functioning in both children and adults The DSM-V defines ADHD as a persistent pattern of attention and or hyperactivity-impulsivity that interferes with functioning of development.

Coprolalia– associated with socially inappropriate words that are derogatory and obscene. It is rare and only impacts 10% of people with Tourette syndrome and is not used to diagnose the syndrome.

Co-Morbidity- the presence of one or more additional conditions occurring with a primary condition.

Echolalia-is characterized as the repetition of words that may be immediate or delayed after the original words are spoken.

Gilles de la Tourette– First person to publish an account in describing a person with “convulsing tic disorder.”

Motor Tics– caused by a movement.

Neurodevelopmental Disorders

Obsessive- Compulsive Disorder (OCD)- is defined as a disorder that includes two core symptoms- obsessions and compulsions. According to the Census for Disease Control and Prevention (CDC), obsessions are defined by: Thoughts, impulses, or images that occur over and over again. These thoughts, impulses or images are unwanted. They cause a lot of anxiety and stress.

Palilalia– involuntary repetition of words, phrases or sentences.

Simple Moto Tics– sudden movements including eye blinking, head shaking, shoulder shrugging or arm jerking. Tends to be brief.

Simple Phonic Tics– sudden sounds including sniffing, coughing, throat clearing and grunting.

Tics- movements or sounds that are unpredictable.

Tourette Syndrome-involuntary, repetitive movement and vocalizations. They are the defining feature of a group of childhood-onset, neurodevelopmental conditions known collectively as Tic disorders and individually as Tourette Syndrome

Involuntary– done without conscious control.

Vocal/ Phonic Tics- tics that produce a sound.

Pervasive Developmental Disorder- Not Otherwise Specified

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According to the 5th edition of the Diagnostic and Statistical manual of Mental Disorders (DSM-5), Autism Spectrum Disorders is based on social communication impairments and restricted, repetitive patterns of behavior with varying levels of severity based on levels of support.

There are four sub types of Autism Spectrum Disorder including:

  1. Asperger’s Syndrome
  2. Autistic Disorder
  3. Childhood Disintegrative Disorder
  4. Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)

What is Pervasive Developmental Disorder- NOS?

PPD-NOS historically was a term used as a catch- all under the diagnosis of the autism spectrum disorder. It was used as a diagnosis for children who displayed some symptoms of autism, but did not meet the full criteria for the disorder. In order to meet the criteria, a child must have persistent deficits in the areas of social communication and interaction and at least 2 of the 4 types of restricted behavior.

People diagnosed with PDD-NOS tend to display a milder form of the autism disorder while this is not always the case. In some instances, some characteristics may be mild, but severe in other areas.

Prevalence 

The prevalence for PDD-NOS is 60-70 per 10,000 and it is considered one of the most frequent childhood neurodevelopmental disorders.

Research Studies

Very little research has been done specifically on PDD-NOS over the years. Some studies discovered that children diagnosed with PPD-NOS were more likely than other ASD diagnosis to no longer show ASD symptoms as they grew older. In one study, it was found that 39% of the sample of children no longer met the criterial for ASD. In another study, it was found that of the 97 children with a PDD-NOS, 25.8% had some degree of an intellectual disability and 9.3% had an associated medical condition such as Fragile X Syndrome disorder or a hearing/visual impairment.

Signs and Symptoms

For individuals diagnosed with PDD-NOS, it is not uncommon to see a higher level of social skills. characteristics may include:

  • Challenges with social behavior
  • Uneven skills development such as high level social skills and delays in play.
  • repetitive body movement
  • Communication challenge such as recognizing facial expressions and emotions and lack of understanding figural of speech and idioms.
  • Maladaptive daydreaming and fantasies
Diagnosis

Assessments

Treatment

While there is no known “cure” to treat PDD-NOS, individuals can benefit from:

  • Social stories
  • Occupational therapy
  • Physical therapy
  • Speech therapy
  • Medication to treat anxiety and depression
The following links describe in more detail specific characteristics of a person with PDD-NOS:
My ASD Child
National Autism Resources
WebMD.Com
Wikipedia

There’s hope for the pandemic easing, but parents of children with autism still face unique challenges. Employers must offer support.

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Published by: HR Drive

As employers begin to focus on reopening workplaces to greater in-person participation amid promising news about the Covid-19 pandemic, it’s important for managers and HR leaders to keep in mind that for families of children with autism spectrum disorder (ASD), this will be yet another transition in a year that has ripped routines to shreds.

“Employers need to be hyper-aware that this is a time when these families will actually need more support,” said Mike Civello, Senior Vice President of Rethink Benefits. “Many of us are so excited to transition back to anything that feels like ‘normal,’ but in many cases, there are complex family situations that will require additional support. A specialized helping hand during this significant home and life transition is critical for this group.” Click here to read the rest story.

Turner Syndrome Characteristics

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Turner Syndrome is a rare disease that occurs in between one and 2,000 birth only affecting females. Turner Syndrome has several names including Ullrich-Turner Syndrome, Bonnevie-Ullrich-Turner Syndrome. gonadal dysgenesis and 45X. This rare disease is the result of the absence of one set of genes from the short arm of one X chromosome.

Characteristics of Turner syndrome include facial and physical appearance, cognitive characteristics, clinical issues and mental healthy symptoms. No two people with Turner syndrome are exactly the same therefore, not everyone will display the same characteristics:

Facial Appearance
  • down-turning eyelids
  • low-set and prominent ears
  • small jaw
  • high narrow roof of mouth
  • neck webbing
Physical Appearance
  • broad chest with widely spaced nipples
  • narrow fingernails and toenails
  • hand and feet swelling
  • short fingers
  • smaller than average height
  • skin moles
Medical Issues
  • chronic middle ear infections
  • hearing loss
  • heart, liver and kidney abnormalities
  • delayed puberty
  • undeveloped ovaries
  • greater risk for diabetes
  • high risk for celiac
  • high risk for osteoporosis
  • GERD
  • scoliosis
  • hypertension
  • high risk obesity
  • may not have menstruations
Cognitive
  • normal intelligence in some cases
  • issues with visual spatial
  • nonverbal memory
  • executive function issues
  • difficulty in understanding social cues
  • behavior issues.
Mental Health
  • low-self-esteem
  • anxiety
  • depression
Reference
Genetics Home Reference
Wikipedia
Turner Syndrome Support Society- UK

 

Updated 5/25/21

How ADHD Changes in Teens

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Published by: Healthline
Written by: Rebecca Joy Stanborough

Adolescence sparks so many physical, mental, and emotional changes that you might wonder whether ADHD also changes during your teen years. The answer is yes… and no.

ADHD doesn’t disappear when people enter adolescence. Some symptoms might settle down, but others might flare up. If your symptoms change and new challenges emerge, it’s important to know what to do about them, whether you’re a young adult with ADHD or the parent of one.

Here’s what to know about how ADHD affects adolescents.

What is ADHD?

Attention deficit hyperactivity disorder (ADHD) is a health condition that makes it harder for people to:

  • pay attention for long periods of time
  • organize and follow through on complex tasks
  • focus in the presence of distraction
  • control impulses
  • remain still and quiet

These symptoms may interfere with your ability to function at home, in social settings, and at school or work.

It’s important to note that in childhood, the teen years, and adulthood, ADHD can look different from person to person. Cultural factors, sex and gender and individual personalities can all shape how ADHD presents. This can make it harder to recognize, diagnose, and treat. Click here to read the rest of the story.

Mosaic Down Syndrome

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There are 3 types of Down syndrome disorders with mosaic being the rarest. 90 to 95% of people with Down syndrome have trisomy for chromosome 21. According to researchers, 2-4% of people with Down syndrome have mosaicism.

What is Down Syndrome?

Down Syndrome  is a chromosomal disorder caused by an extra cell division that results in an extra 21st chromosome. This causes developmental delays both intellectually and physically. It is the most commonly occurring chromosomal condition and is estimated that 1 in every 700 babies in the United States are born with Down syndrome.

Mosaicism

Mosaicism or Mosaic Down syndrome develops when there is a mixture of cells meaning some cells contain the extra copy of chromosome 21 while other cells are typical chromosomes.

Prevalence
  • It is estimated that 2 or 3 children diagnosed as having Down syndrome carry the mosaic form.
  • Mosaicism for trisomy 21 was first reported in 1961 by CM Clark, JH Edwards and V. Smallpeice who describe an 11-month old female with good muscle tone, no congenital heart defects, meeting developmental miles yet with eyes similar to babies born with Down syndrome.
  • By 1964, 24 cases of mosaicism were now on record.
  • Little is still known on the similarities and differences between trisomy 21 and mosaic trisomy.
Signs and Symptoms

People with Mosaic Down symptoms often have the same health issues as individuals with trisomy but less severe. This includes:

  • sleep apnea
  • heart issues
  • visual impairments
  • immune disorders
Physical Characteristics

People with Mosaicism vary in physical appearance depending on the number of trisomy cells.

People with Mosaic Down syndrome typically have a higher IQ and are more likely to hold a fulltime job compared to people with trisomy 21 Down syndrome.

Screening Test

Screening test are usually done as routine test during pregnancy health visits.

Updated 5/20/21

Landau-Kleffner Syndrome

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Landau-Kleffner syndrome is a rare epilepsy disorder that affects children between the ages of 3 and 7 years. The child begins to experience gradual or sudden loss of speaking and understanding words.

Children with Landau-Kleffner syndrome are known to also have abnormal electrical brain waves and seizures that occur primary during the night.

A normal developing child, gradually loses expressive and receptive skills. The syndrome affects the part of the brain that controls comprehension and speech. The Broca area which is a region located in the frontal lobe is responsible for speech. Damage to this part of the brain affects speaking. the Wernickle area is located in the left hemisphere of the brain and impacts receiving or understanding language.

Discovered by William M. Landau and Frank Kleffner in 1957 through 6 case histories. Landau and Kleffner findings show that after normal development speech, all children studied developed aphasia from a period ranging from 1 day to several months, studies also found that children also experience seizures and irregular EEG’s especial while sleeping.

Landau-Kleffner syndrome is also known as acquired aphasia with convulsive disorder, acquired epileptiform aphasia and LKS.

Prevalence

Laudau-Kleffer syndrome affects males more than females. It is a rare disease in which 200 cases have been recorded between 1957- 1980. Typically 100 cases are diagnosed every 10 years.

Cause

The cause of Laundau-Kleffner is unknown and likely occurs through a genetic mutation

Signs and Symptoms

Early signs of Landau-Kleffner syndrome includes children who were developing normally losing the ability to speak or understand spoken language. The appearance of hearing loss or deafness, and an epileptic seizure occurring at night. Seizures typically stop by the age of 15. Other signs include behavior issues such as hyperactivity, aggressiveness and depression.

Diagnosis

Landau-Kleffner syndrome is often misdiagnosed as autism, pervasive developmental disorder and hearing impairment based on the gradual loss of language skills. EEG test are necessary in order to provide an accurate assessment since an abnormal EEG is common among children with Landau-Kleffner disorder. Testing often includes standardized speech language assessment in order to rule out deafness or hearing impairment

Treatment

Antiepileptic drugs are often used including Keppra, diazepam at night, and depakote. Speech therapy is also given to help with the loss of language and a behavior treatment plan.

References

Landau-Kleffner Syndrome (1957). “Syndrome of acquired aphasia with convulsive disorder in children.” Neurology. 7(8): 523-30.

Epilepsy Foundation

John Hopkins Medicine

Medicine Net

Medscape

National Organization for Rare Disorders

NINDS

WEBMD

Wikipedia

Updated 5/19/21

Hybrid Learning Is (Still) Disorienting. How to Help Ground a Student with ADHD.

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Published by: ADDitude

The 2020-2021 school year began on Zoom and Google Classroom for most U.S. students. Then it eased into (and out of) hybrid for many. And now re-entry plans are underway nationwide, with snags and virtual days aplenty.

As parents, we are drained and overwhelmed by the constant change — not to mention our kids’ struggles keeping up with assignments, tests, and projects. We see the low level of motivation, the high level of distractibility, and the increased demands on remote learners who are expected to monitor their assignments and lessons via multiple portals while simultaneously remembering to upload assignments and to actually click “Turn In Assignment.” For children with executive function challenges, these extra steps and the independent organization required to execute them regularly are messy — if not untenable. Click here to read the rest of the story.

What Does High-Functioning Adult ADHD Look Like?

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Published by: WebMD
Written by: Stephanie Booth

Growing up, Dusti Arab of Portland, OR, was a gifted student who did well in school. But as an adult, “I would hit a snag in a project and be completely unable to move forward,” she says. “I’d throw myself into one thing after another, trying to find a magic solution that would keep me focused, but nothing stuck for long.”In 2020, some memes about attention deficit hyperactivity disorder (ADHD) caught Arab’s eye. Although it had never crossed her mind that she could have it, Arab went to see a doctor.

When she was diagnosed with ADHD, Arab felt a sense of relief. “It was like the clouds parted and the sun came out. It wasn’t all in my head — and it wasn’t just me,” she says.

ADHD in kids gets talked about a lot. But adults can have it, too. When you have only mild symptoms, or you have more severe symptoms that you manage well, you have what’s called “high-functioning” ADHD.

Signs of Adult ADHD

ADHD is often first spotted in childhood. Many kids who have it find it hard to sit still and focus. They may act on impulse without thinking things through.

In grown-ups, it can be different. Click here to read the rest of the story.

How the Workplace is Changing for Adults with Autism

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Published by: KHOU. 11
Written by: Chloe Alexander

More and more high-profile companies are discovering an untapped workforce — adults on the autism spectrum.

Let’s connect the dots.

Recently, a young man in Virginia went viral after he posted a letter on LinkedIn telling potential employees not only about his autism but the skills he could bring to the workplace. And it turns out many big-name employers like IBM and Ernst and Young agree, seeing neurodiversity as a way to help their bottom line.

Ernst and Young, a global accounting powerhouse, has changed the interview process for applicants with autism. Moving from a one-on-one interview that could be tough for someone who struggles to interpret social cues to a series of problem-solving challenges.

IBM has a program called Neurodiversity that recruits autistic adults. Those employees work in everything from software development to cybersecurity to testing.

Employees in the program have earned patents for the work they have done. Recently 60 minutes found 30 large companies, including Microsoft and Ford, that were actively recruiting autistic employees. Click here to read the rest of the story

Why are researchers missing signs of autism in girls?

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Published by: The World
Host: Todd Zwillich

One in every 68 children born in the United States is diagnosed with autism spectrum disorder. Boys are supposedly four times more likely to have the condition, but clinicians often miss or overlook symptoms in girls, who are frequently on the less disabling end of the spectrum.

Since the disorder seems to appear more often in male subjects, the criteria for diagnosing the disorder is almost entirely developed from the study of boys. But a group of researchers recently launched a major study of autism in women and girls.

Emily Brooks was diagnosed on the spectrum as an adult. As a person who identifies as queer and non-binary, she fears that studying girls and boys separately not only ignores gender diversity, but perpetuates gender stereotypes.

“There’s been a myth that autism only exists in boys, or that it’s biologically more common for boys and men to be autistic than girls and women,” Brooks says. “Some of the larger organizations kind of perpetuate this myth by having [campaigns] like ‘Light it Up Blue,’ with blue representing four times more boys than girls being on the spectrum. I think as a culture we just kind of got caught in the idea that being autistic is a male thing, when really, it’s just another way of being human.”

Brooks, a graduate student in disability studies at the City University of New York and a journalist who writes about gender, sex, and autism, has experienced this gender bias first hand.

“Somebody told me about this research study for adults on the autism spectrum and asked me if I wanted to participate,” she says. “When I looked into it, they said it was only for men — they say that they have fewer women [on the autism spectrum], so they want it to be statistically significant.” Click here to read the rest of the story.

Why Recognizing Dyslexia In Children At School Can Be Difficult

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Published by: KQED
Written by: Holly Korbey

When Anna and Chris Thorsen of Nashville sat down for the first parent-teacher conference of their daughter Clara’s second-grade year, they weren’t surprised to hear that Clara was having trouble telling time. Her teacher also said that Clara seemed to learn something one day, then forget it the next; her writing was poor and slanted upward, no matter how hard she tried.

“My husband starts to smile and reaches over and pets my arm, because in that moment, we both know Clara has dyslexia. There’s no question,” said Anna Thorsen.

Thorsen knows something about dyslexia herself, having struggled through school, and having been diagnosed with it at age 27. “It was almost like her teacher was ticking through a dyslexia checklist and didn’t know it.”

In many children with dyslexia, a neurobiological condition in which the brain fails to read words or letters, a lack of swift and intensive intervention can result in reading failure as well as psychological difficulties for the child. When the Thorsens came home from the conference, they decided to get Clara tested immediately and then decide the next steps. Click here to read the rest of the story. Click here to read the rest of the story.

Autism and Sleep Disorders

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Autism Spectrum Disorders is characterized as a neurodevelopmental disorder that are a group of conditions with onset in the developmental period that produces impairments in the area of social communication, reciprocal social action as well as repetitive and stereotyped behaviors and interest.

It is a spectrum meaning it varies from person to person with varying co-disorders including sleep.

Studies show that children with sleep disorders experience insomnia and sleep issues at a higher rate than children without autism.

Interviewed parents reported showed that 53% of children with ASD have difficulty sleeping including difficulty falling asleep(23),frequent awakening(19) and early morning wakening (11). Sleep disturbance included bedtime resistance, insomnia, breathing issues while sleeping, morning arising issues and daytime sleepiness. There is also evidence that children with autism spectrum disorder are reported to experience high levels of Parasomnias, defined as a group of sleep disorders involving unwanted events displayed by complexed behaviors during sleep. This includes:

  • Bed Wetting
  • Sleep Hallucination
  • Nightmares
  • Night Terrors
  • Sleep Walking

Sleep disturbance fin autism falls into one of the following categories:

  1. difficulty falling asleep
  2. night walking
  3. early walking
  4. night terrors

The Impact of Sleep

Lack of sleep for an autistic child and adult presents additional challenges. Studies show the lack of sleep can increase issues with repetitive behaviors, fatigued parents, increase anxiety and depression and increase cognitive issues. this decreases the quality of life for the person during daytime. In school, the child may have difficulty staying awake, regulating emotions and an increase in hyperactivity, aggression and poor appetite.  As children become adults, it is possible for the issue of sleeping to increase. there is evidence that autistic adults continue to have issues with insomnia and sleepwalking.

Causes

  • Psychiatric comorbidities including anxiety, behavior problems, and hyperactivity
  • Genetic Mutations including serotonin and melatonin which has been described as an important factor in the sleep-wake cycle. Studies have found abnormal melatonin in people with ASD.

Tips for Improving Sleep

  1. Create a regular bedtime routine including using a visual cue which will help the child or adult prepare for bed.
  2. Make sure the bedroom is comfortable including using  a dim light in the bedroom and blackout blinds. Also ensure the temperature in the room is comfortable
  3. Quiet activities. Plan for quiet play before bed which allows the person to relax. This can include reading, puzzles, or a craft activity.

Reference

Updated 4/7/21

 

 

Many On The Spectrum Have Sensory Processing Disorder. Here’s What You Need to Know

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Published by: The Autism Site

With 5% to 16% of children affected by Sensory Processing Disorder in some way, it’s clear that this disorder isn’t limited just to children on the autism spectrum, though it is common with these kids. Children affected by SPD endure chronic disruptions and difficulties with the challenges of everyday life. However, as science learns more about what causes SPD, therapies and interventions make it possible to help affected kids learn to cope and thrive.

What Is SPD?

SPD occurs when the brain interprets all sensory input coming through vision, taste, touch, hearing, and smell as being equally important. When this occurs, the child experiencing it is typically overloaded. Some neuroscientists liken SPD to a traffic jam in which all the sensory input being processed by the brain just stops. Click here to read the rest of the story.

April 2 is World Autism Day

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Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that impacts social, speech, behavioral and motor skills. It is a spectrum disorder meaning it varies from person to person. No two people have the same symptoms. It is estimated that 1% of the population is diagnosed with autism.

The United Nations proclaims April 2 as World Autism Day in an effort to recognize and promote awareness by bringing worldwide attention to issues facing people with autism.

Worldwide 1 in 160 children is autistic

The prevalence of autism in Africa is unknown

1 percent of the world population is diagnosed with autism spectrum disorder

Prevalence in the United States is estimated at 1 in 68 births

1 in 42 boys are diagnosed with autism

1 in 189 girls are diagnosed with autism

100 individuals are diagnosed everyday

More than 3.3 million Americans live with autism spectrum disorder

Autism is the fastest growing developmental disability

Autism services cost the United States citizens 236-262 billion annually

Autism costs a family $60,000 a year on an average

Boys are nearly five times more likely than girls to have autism

Autism generally appears before the age of 3

40% of children with autism do not speak

25-30% of children with autism have some words at 12 to 18 months, and then lose them.

Studies in Asia, Europe, and North American have identified individuals with ASD  with an average prevalence of between 1% and 2%.

About 1 in 6 children diagnosed with autism also have a developmental disability.

Parents who have a child with ASD have a 2%-18% chance of having a second child diagnosed with autism

Almost half (44%) of children diagnosed with ASD has average to above average intellectual ability.

ASD commonly co-occurs with other developmental, psychiatric, neurological, chromosomal and genetic diagnoses.

Almost half (44%) of children with autism have average to above average intellectual ability.

Autism is reported to occur in all racial, ethnic and socioeconomic groups.

The UK estimate is 1 in 100 are diagnosed with autism

30-50% of individuals with autism also have seizures.

Autism Spectrum Disorders refers to a group of complex neurodevelopment disorders which includes repetitive patterns of behavior and difficulties with social communication, interaction, sensory processing and motor issues.

.In 1943, Leo Kanner dissociated autism from schizophrenia.

Autism is more common than childhood cancer, diabetes and AIDS combined.

Accidental drowning accounted for 91% total U.S. deaths reported in children with autism due to wandering.

Stimming

  • It is also prevalent among people on the autism spectrum.
  • In fact in many cases, it is part of the diagnosis due to the repetition of stimming.
  • Stimming is often used as a means to self-regulate, self-calm and for self-expression.
  • The movements are repetitive and are used to self-stimulate the 7 senses.
  • It is often described as a repetitive motor behavior that can disrupt academic and social and other activities.
  • One of the theories behind stimming is that beta-endorphrins are released in the brain causing an euphoric feeling which is generally a response to pain.
  • Stimming behavior. based for self-soothing and to help a child or an adult regain emotional balance.
  • Sensory Overload. Too much sensory information can lead to stress, anxiety and eventually a meltdown.

Wandering Statistics

    • Nearly half of children with autism engage in wandering behavior
    • Increased risks are associated with autism severity
    • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
    • Half of families report they have never received advice or guidance about elopement from a professional
    • Accidental drowning accounts for 71% of lethal outcomes, followed by traffic injuries at 18%
    • Other dangers include dehydration; heat stroke; hypothermia; falls; physical restraint; encounters with strangers
    • Accidental drowning accounted for 91% total U.S. deaths reported in children with autism due to wandering.

 

16 people with Autism describe why eye contact can be difficult

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Source; The Mighty
Written by: Melissa McGlensey

or some people on the autism spectrum, making eye contact can be a stressful, distracting and sensory-taxing experience. Far too often, though, outsiders view avoiding eye contact as “rude” or “antisocial,” when this isn’t the case at all.

In an effort to better understand how this experience feels for many on the spectrum, The Mighty asked our readers with autism who find eye contact difficult to share a description of what it’s like.

This is what they had to say: 

1. “It’s abstract to me and can be draining. Looking at someone else in the eye means I am taking in everything about them as a person, and I become overloaded. It’s a constant stream of extra sensory or processing information on top of what I’m already trying to sort through in my head. It can disrupt any thought or speaking process I have going on and zaps my energy quickly.” — Laura Spoerl. Click here to read the rest of the story.

 

4 ways parents of children with special needs can prepare for a natural diaster

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Source: Think Inclusive
Written by: Sara Bell

From 1994 to 2013, natural disasters killed 1.35 million people. While not all natural disasters can be predicted, the best way to protect yourself and your family is to prepare for the worst ahead of time. For parents of children with special needs, this is especially true. Knowing how to take swift action is the best way to ensure their safety in any natural disaster.

Here are a few ways parents of children with special needs can prepare.

Prepare an emergency kit. Pack an emergency kit, which includes clothes, bottled water, etc., for each member of the family. As Disabled-World.com notes for a child with special needs, you’ll want to be sure to pack medicines and other needed medical supplies, wheelchair batteries, food for service animals, and any other regularly used items that won’t be readily available in the aftermath of the disaster.

Practice your getaway plan. Some natural disasters may require that you and your family leave your home and take shelter elsewhere. As this guide on wildfire safety notes, it’s best that people with disabilities practice their evacuation plans ahead of time to ensure they can get to safety as quickly as possible. If your child has mobility issues, you may even want to designate an alternate route for getting out of the home, in case your planned path is blocked.

Pinpoint the safest areas of your home. Depending on the natural disaster, different areas of your home will be the best places for you and your family to ride out the event. Make sure you find places in your home that can accommodate your child with special needs. In its guide on disaster preparedness, the Red Cross offers advice on what people with disabilities can do to protect themselves in different kinds of natural disasters. For example, in an earthquake, you’ll want to be sure your child can get under a sturdy piece of furniture. If that isn’t possible and your child is in a wheelchair, lock their wheels and cover their head with a hard object. In a tornado, the Red Cross recommends getting yourself and your child to the “lowest floor or below-ground area of your home.” Click here to read the rest of the story.

What sensory processing disorder says about autism

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Source: Spectrum News
Written by” Sarah Deweerdt

Jack Craven has superpowers. When his mother, Lori, misplaces an item in the house, she asks the 12-year-old to “look in your head,” through the rich catalog of visual information he seems to assemble without effort. Jack always finds the lost object. His astonishing memory for faces enables him to pick out someone he’s seen only once or twice before from a sea of strangers in a crowded school gymnasium. His sharp hearing makes him an excellent vocal mimic. Request that he sing a Beatles tune and he’ll ask if you want it sung in the style of Lennon or McCartney.

But great powers, as any superhero narrative goes, come with great challenges. He endures, rather than enjoys, the arcade birthday parties popular among tween boys in suburban Atlanta where he lives. They’re just too noisy, too busy, too overstimulating. Jack’s hearing is so sensitive that he can’t always eat at the table with his family, because the sound and sight of them chewing might make him throw up. As an infant, he never slept for more than four hours at a stretch, and had to be held upright the whole time, his stomach pressed against his mother’s chest and her palm pressed atop his head.

Jack has sensory processing disorder (SPD), a condition that includes people who are overly sensitive to what they feel and see and hear, but also those who are undersensitive, and still others who have trouble integrating information from multiple senses at once. SPD is not an official diagnosis. It isn’t included in the newest edition of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5). Still, it is widely used as a catch-all by clinicians, and some studies suggest that it may affect between 5 and 15 percent of school-age children. Children with the clinical label SPD also have a lot in common with children diagnosed with autism, up to 90 percent of whom also have sensory difficulties. Click here to read the rest of the story.

How early intervention can help your child with autism

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Source: Verywell Health
Written by: Lis Jo Rudy

Common knowledge says that parents, upon receiving an autism diagnosis for their child, should run—not walk—to the nearest early intervention center.

Early intensive intervention, it is said, is the key to “optimal outcomes” for children with autism. Scientists have long known that the brain grows quickly between the ages of zero and three, which suggests that early intervention would be an ideal way to treat a childhood disorder.

Can Early Intervention Cure Autism?

At least one study suggests that about 14% of children with autism who undergo two intensive years of a program called the Early Start Denver Model will improve radically. In fact, those children would no longer qualify for autism diagnoses if they were being evaluated at a later age. A similar program called LEAP had similar outcomes. There is even some evidence that these programs can change the way the brain functions. Click here to read the rest of the story

There are, however, a few caveats to this finding.

  • First, of course, is the fact that the vast majority of children who undergo intensive early intervention do not improve radically. Yes, their symptoms may improve, but they may still have very significant delays and challenges.
  • Second is the finding that even those children whose autism symptoms improve radically are left with developmental and/or behavioral challenges. In fact, those children are often diagnosable with disorders such as ADHD, learning disabilities, intellectual disability, and so forth.
  • Third, an accurate autism diagnosis is, by definition, a lifelong diagnosis. Symptoms that are difficult to identify in a 6-year-old can become serious challenges in a 20-year-old. Problems with pragmatic speech, anxiety, and repetitive behaviors often emerge as people are exposed to more complex and challenging situations.

4 Ways to Utilize Rare Disease Foundation Websites as Educators

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According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease vary from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Although rare, special education teachers and habilitation specialist are more than likely to have a student or an individual diagnosed with a rare disease disorder. In most cases the person is also likely to have an intellectual developmental disorder, which qualified the student to have an iep or an adult attending a day program to qualify for a Medicaid Waiver.

The foundation website’s provide information that can help you understand the rare disease and the impact it has on the student. Further information provides current research on the disorder as well.

The websites can help you in the following ways:

  1. Provides detailed diagnosis information including clinical features, characteristics, and frequently asked questions.
  2. Facebook groups are available where you can join a group to ask questions and share stories.
  3. Printed material included factsheets, booklets, newsletters and ebooks.
  4. Educational information includes webinars, video’s conferences and seminars.

 

The following are links to rare disease website:

Aicardi Syndrome Foundation– Incorporated in 1991, the foundation is dedicated to provided assistance to those affected and their families.

Angleman Syndrome Foundation- Commitment to research to discover Angelman Syndrome treatment and a cure and supporting families.

CDKL5 Deficiency Disorder(International Foundation for CDKL5 Research)- Committed to funding research, both scientific and clinical, raising awareness. Also provides support to newly diagnosed through adulthood..

Cerebral Palsy Foundation– Collaborates with researchers to better understand the disorder. The website offers information through factsheets and a video library.

Chromosome 22 Ring- (Chromosome 22 Central)- Includes information and support for all Chromosome 22 disorders including research, support and events.

Chromosome 22q11.2 Deletion- (The International 22q11.2 Foundation) Provides resources and connections to experts regarding medical, psychosocial and educational needs. The foundation also organizes awareness events, educational conferences and supports legislative advocacy.

Cornelia de Lange Syndrome Foundation– Provides a host of services including information to families, professionals, and researchers.

Dravet Syndrome– A non-profit organization dedicated to raising funds for Dravet Syndrome. Also provides educational videos and webinars on website.

Duchenne Muscular Dystrophy-(Cure Duchenne)– The mission is to improve the lives of everyone affected by Duchenne through accelerating researchers to find the cure, improve care and empowering the Duchenne community.

Fragile X Syndrome Foundation- Serves all those living with Fragile X syndrome with a focus on community, awareness, and research in the pursuit of treatment and a cure. The website includes information on Fragile X and the relationship with Autism. The website also provides a free e-book on adults with Fragile X Syndrome.

Hydrocephalus Association- Provides resources to families, communities, professionals and researchers. Sponsors a yearly educational days and advocacy.

Kabuki Syndrome- The mission is to drive research efforts that show promise to treat, prevent or cure Kabuki syndrome through fundraising, knowledge-sharing and collaboration with researchers

Lowe Syndrome Association– The mission is to improve the lives of persons with Lowe syndrome and their families through fostering communication, providing education and supporting research.

Prader Willi Syndrome Association– The mission is to enhance the quality of life and empower of those affected by Prader-Willi Syndrome. The website includes educational resources such as webinars and a resource library.

Rett Syndrome Organization– The mission is to empower families with information, knowledge and advocacy and to raise awareness.

Sickle Cell Disease Association of America– The mission is to advocate for people affected by sickle cell conditions and empower community-based organization to maximize quality of life and raise public consciousness while searching for a cure.

Trisomy 18 Foundation- Provides information and educational resources to families, medical professionals and the general public.

Turner Syndrome Foundation- Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care.

Williams Syndrome Association– Founded by families of individuals with Williams syndrome to provide resources to doctors, researchers, and educators

10 common myths about ADHD

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Published by: Happiful
Written by: Emma Mahoney

For her whole life, Emma Mahony has shamed and blamed herself for not being like ‘neurotypical’ women. It wasn’t until her son was diagnosed with ADHD that her journey of self-discovery began, leading to her own diagnosis at 52

Because of the way my brain is wired, I can’t help but get things wrong. Even at the age of one, when I learnt to speak, I would say everything backwards. Butter was ‘tubba’, birds were ‘dubbies’ and it took a while for my parents to transpose the letters and see that I was making sense.

The merest trifles that most people do naturally – arriving at places on time, remembering their wallet, not losing things constantly, such as keys, mobile phones, and credit cards, paying fines, avoiding speeding tickets – are rather boring things at which to excel in my world. I’ve made them that way so as not to beat myself up when I fail at them regularly.

However, the older I get, the more I realise that these boring things are actually important, and how exasperating it is for people when they think that I do them ‘on purpose’ or, more recently since my diagnosis, that I ‘use ADHD as an excuse’.

ADHD is not a moral failing; it is a neurological one. It is not ‘all in your head’, and there’s no ‘subconscious intention to forget something’, as one professional continually suggested before diagnosis. It is just that I am neuroatypical. Click here to read the rest of the story.

Let’s Talk About ADHD in Children

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Published by: Health Central
Written by: Holly Pevzner

What Is ADHD, Again?

Simply put, ADHD, or attention-deficit hyperactivity disorder, is one of the most prevalent childhood conditions that can continue through adolescence and into adulthood.

According to a recent report from the Centers for Disease Control and Prevention (CDC), 6.1 million children have been diagnosed with ADHD. Boys are more likely to be diagnosed (12.9%) than girls (5.6%). And it’s incredibly common among adults: Roughly 11 million have ADHD, or 5% of the adult population.

There are three main behaviors associated with ADHD, according to the National Institute of Mental Health (NIMH):

  • Inattention
  • Hyperactivity
  • Impulsivity

Of course, every kid (and adult) is inattentive or impulsive at times. Who among us hasn’t felt like jumping out of their skin while having to stay in place during, say, a pandemic? But ADHD is different: It’s not being inattentive sometimes, or hyperactive now and then. In children with ADHD, these behaviors:

  • are more severe
  • happen more often
  • interfere with quality of life

What Causes ADHD in Children?

ADHD is a chronic neurobiological condition and its cause is not entirely known. Right now, there’s zero evidence to show that allergies, immunizations, parenting styles, or too much sugar or food additives have anything to do with your child’s diagnosis.

And even though 58% of Americans surveyed believe an uptick in technology and video game play has led to a greater occurrence of ADHD in children, there’s no clear evidence that this is accurate either.

Instead, kids between 8 and 10 who already have multiple ADHD symptoms do seem to game more than others, notes a 2020 report in the journal European Child & Adolescent Psychiatry. The probable reason? Fast-moving video games are pretty effective at holding the attention of kids who find concentrating challenging. Click here to read the rest of the story

Teaching Students with Feeding Tubes: What You Need To Know

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If you work in a special education class or a day habilitation setting, more than likely you are teaching a student or an individual with complex needs including the use of a feeding tube.

February 8-12 is recognized as Feeding Tube Awareness Month which is a great opportunity to provide information on tube feeding in an educational setting.  According to the Tube Feeding Awareness Foundation, there are over 300 conditions that require students and individuals to receive nutritional support through tube feeding.

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent .

Reasons to use a feeding tube
The student or individual may have a swallowing disorder or dysphasia. This means there is an increase risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.
Types of Feeding Tubes

Gatro Feeding Tube

The gastrostomy tube (G tube) is placed through the skin into the stomach. The stomach and the skin usually heal in 5-7 days. This type of tube is generally used in people with developmental disabilities for long term feeding.

Nasogastric Feeding Tube

The nasogastric (NG tube)  is inserted through the nose, into the swallowing tube and into the stomach. The NG tube is typically used in the hospital to drain fluid from the stomach for short term tube feeding.

Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

The following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 Deletion Syndrome

Angelman Syndrome

Aspiration

Cerebral Palsy

CDKL5 Disorder

Cornelia de Lange

Cri Du Chat Syndrome

Down Syndrome

Dravet Syndrome

Dysphasia

Edwards Syndrome

Fetal Alcohol Syndrome

Fragile X Syndrome

Hydrocephalus

Lennox-Gestaut Syndrome

Microcephaly

Ohtahara Syndrome

PPD- Not Otherwise Specified

Turner Syndrome

Trisomy 18

Spastic Diplegia

Traumatic Brain Injury

West Syndrome

Williams Syndrome

The following are articles on IEP and Accommodations:

IEP/Accommodations

Going to school with a feeding tube- http://www.tubefed.com

Accommodations and supports for children with pediatric feeding disorders- Kids First Collaborative

School-based accommodations and supports– Feeding Matters

Tube feeding at school: 8 tips to prepare your child and school staff– Shield Healthcare

Signs and Symptoms of Issues related to a g-tube

Complications due to tube feeding may include:

  • constipation
  • dehydration
  • diarrhea
  • infections
  • nausea/vomiting

Aspiration

Aspiration can be caused by:

  • reflux of stomach contents up into the throat
  • weak cough, or gag reflux
  • the feeding tube is not in place
  • delayed stomach emptying
  • The head is not raised properly.

Students should be observed for aspiration during feeding. The following are signs and symptoms of aspiration:

  1. Choking or coughing while feeding
  2. Stopping breathing while feeding
  3. Faster breathing while feeding
  4. Increased blood pressure, heart rate and decreased oxygen saturation.

The following are articles on signs and symptoms of aspiration during feeding

Aspiration in Children

How to Prevent Aspiration

Life with Aspiration and a Feeding Tube

Pediatric Aspiration Syndromes

Tube Feeding Aspiration

Resources

Book Review: My Belly Has Two Buttons: A Tubie Story

Tube Feeding Awareness Foundation

5 ADHD Organization Tools That Never Work for Me – and 5 That Do

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Published by: ADDitude
Written by: April Jackson

All my life, I’ve had practically everyone – therapists, teachers, coworkers, family – try to force on me a variety of tools and techniques to make my life with ADHD a little easier. The truth? Most of their solutions have never worked for me.

One unspoken burden of ADHD is trying to explain to others — ADHD or not — why I still struggle even after trying their, forgive me, useless tools. If it works for me, it’ll work on you.

Given ADHD’s wide-ranging symptoms, not to mention our individual strengths and weaknesses, it makes sense that one person’s treasured tools and strategies are another person’s trash.

Here are some of the organizational tools that I was forced to use over and over again to no avail, and other ones that actually helped – a lot! Click here to read the rest of the story

 

Why my son’s ADHD makes remote school a daily struggle — and how to ease the pain

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Published by Yahoo Sport
Written by: Kamilah Newton

Between remote learning and working from home, every parent I know is struggling now more than ever to maintain a semblance of normalcy — or, if you’re like me, sanity. While on some days I do feel equipped to help my 6-year-old son with his second grade assignments, most days lately, between his work and mine, feel insurmountable.

That’s especially true because my son has ADHD — attention deficit hyperactivity disorder — which makes the realities that are already hard for absolutely everyone seem even harder.

A quick peek into my reality: breakfasts reheated six times over, and sometimes no full meal before 2 p.m., despite breastfeeding my 6-month-old daughter throughout the day. Once-normal household happenings — a package delivery, for example, which wakes the dog and then the infant — are now major nuisances and distractions. And sleep has been elusive, to say the least. Most days I have my partner to lean on, but even he is working two jobs amid the growing pandemic. Click here to read the rest of the story

Low Tech Augmentative and Alternative Communication (AAC) You Should Know About

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You may be working with a child or an adult that uses an AAC communication device. Are you familiar with low-tech AAC devices?

According to Beukelman and Mirenda (2013), an estimated 1.3 percent of Americans cannot meet their daily needs communication needs using natural speech. Using low-tech AAC is one way to help children and adults with limited communication skills.

What is AAC?

AAC or Augmentative and Alternative Communication includes various methods of communication systems including communication devices, strategies and tools that helps a person communicate their wants, needs and thoughts specifically for children and adults who have limited communication skills.

What are the benefits of using AAC?

Studies show improvement in language development, literacy and communication among users including the use of picture exchange. There is also research that shows people working with an AAC are able to:

  • take turns appropriately
  • request items
  • decrease challenging behavior
  • improve receptive and expressive skills.
Who uses an AAC?

Children with developmental delays including motor, cognitive and physical limitations including children and adults with:

AAC Terminology You Should Know

Communication board- based on the cognitive and physical ability of the person, it is often organized by topic

Eye gaze- used in low-tech AAC by the person looking at an object and selecting the correct item using either the communication board or booklet.

Low-Tech- basic communication aids that include pictures, letters, words, symbols, communication board or picture books that cannot be changed or altered.

The following are links tp AAC core words:

AAC Core Words

70 kids picture books to target core vocabulary AAC (Omazing Kids)

100 High Frequency Core Word List (AAC Language Lab)

Core Word of the Week– The Center for AAC and Autism

Teaching Core Vocabulary– (Praatical AAC)

Low Tech AAC Boards

Eat, Think and Speak– a blog written for medical Speech and Language Pathologist on topics relating to swallowing, communication and cognition. Provides a blog article on free low-tech material including a wide variety of premade communication boards

Project Core– Provide free sample lesson plans focusing on talking with one word at a time to using correct grammar and word order.

 

Couple Start Outdoor Classroom For Kids With Special Needs

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Published by: Disability Scoop
Written by: Emily Bamforth, Advance Ohio Media/TNS

CLEVELAND — Akron Public Schools offered Lyra Thomas, a student with Down syndrome, specialized therapy, support in the classroom and a social network.

Lyra, 8, was on track to match her peers when the pandemic hit, parents Max Thomas and Holly Christensen said. But when schools closed in the spring, she fell behind. The district is still in remote learning, as the board of education looks to pinpoint a time for return as coronavirus cases in the state spike again.

But Lyra’s education couldn’t wait. So Thomas and Christensen bought a tent and set up a pop-up classroom in the backyard. They opened the classroom to other local learners with disabilities, and hired recent Kent State graduate Declan McCaslin, or “Mr. M,” to lead lessons and help the kids navigate remote learning and appointments. Click here to read the rest of the story

 

Signs of Autism Spectrum Disorder in Children with Down Syndrome

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Signs and symptoms of Down syndrome is fairly easy to detect especially since there are specific physical characteristics of the disorder. But what if there is also a diagnosis of autism?

Studies show that 5 to 39% of children with Down syndrome are also on the autism spectrum. There are overlaps in some of the symptoms which delays the signs and symptoms of autism. This observation is slowly growing and informing parents and educators  to observe for specific signs and symptoms.

It is possible that educators and therapist may be the first to notice that children with Down syndrome also display characteristics that are similar to autism.

Why is it important?

According to authors Margaret Froehlke and Robin Zaborek from the book, When Down Syndrome and Autism Intersect, The education approach in both Down syndrome and autism will be different than for children with a single diagnosis of Down syndrome including accommodations and writing the IEP. Teaching strategies will also differ. Teaching a student with Down syndrome who require tactile demonstrations, simple directions, and immediate feedback will now require concrete language, social stories, the use of few choices and the use of concrete language.

The importance of getting the diagnosis
Most often children with Down syndrome are treated for the characteristics of having Down syndrome which overlooks giving children the appropriate treatment for Autism such as social skills and sensory issues. A child or young adult with both diagnosis will likely experience aggressive behaviors, meltdowns, and show signs of regression during their early development. The following are signs and symptoms to look for in your child, or student:
  • Hand flapping
  • Picky eater
  • Echolalia
  • Fascination with lights
  • Staring at ceiling fans
  • History of regression
  • Head banging
  • Strange vocalization
  • Anxiety
  • Seizure Disorder

Signs of overlap include:

As the student gets older, there may be ongoing issues with sensory disorders and transitions leading to meltdowns

Additional Resources:

Autism and Meltdown Resources

Printable Down Syndrome Fact Sheet

 

Reference

When Down Syndrome and Autism Intersect: A Guide to DS-ASD for
Parents and Professionals
By Margaret Froehlke, R. N. & Robin Zaborek, Woodbine House, 218 pp.

Updated 1/12/2021

Autistic children may have to mute own perspective to grasp others’

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Published by: Spectrum News
Written by: Barhar Gholipour

To understand another person’s point of view, children with autism need to actively suppress their own, a new study suggests1.

People with autism struggle with theory of mind — the ability to guess others’ thoughts and feelings. This may contribute to their social difficulties. The new work hints at the brain processes that underlie their difficulty.

The researchers used magnetoencephalography (MEG) to monitor brain activity in autistic and typical children, aged 8 to 12 years, as they performed a version of a classic theory-of-mind test. This test involves inferring someone else’s knowledge about the location of an object.

Typical children generally pass this test by the time they are 5. Most children with autism don’t pass until their teens, but those with high intelligence and strong language skills may figure it out sooner.

The autistic children in the new study perform the task as well as their typical peers do, but their brain activity differs: Unlike typical children, those with autism heavily recruit an area involved in inhibiting brain activity.  Click here to read the rest of the story

2021 Special Needs Awareness Observance Calendar

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Download printable here: 2021 Special Needs Awareness Observance Calendar
Did you know that 1 in 6 or 15% of  children aged 3 through 17 have one or more developmental disabilities? Or that according to the World Health Organization (WHO) that over a billion people live with some form of disability? This means that nearly 1 in 7 people on Earth have some form of a disability. For this reason, disability awareness and acceptance is more important now than ever before.

What is the Purpose of Disability Awareness?

Disability awareness serves many purposes including informing and educating people on a certain cause.  In some cases organizations and agencies use it as part of their annual campaign in an effort to bring awareness and raise money for their cause. Employers often conduct trainings on disability awareness as an effort to educate employees and to decrease bullying in the workplace. Disability awareness also can be used to address myths, misconceptions and the realities of having a disability.  Ribbons are also used that are specific to awareness activities. Through disability awareness campaigns it is hoped that people learn and develop a greater understanding of those with a disability. Annual awareness observances are sponsored by federal, health and non-profit organizations. In some cases observances are worldwide including World Autism Awareness Day or World Cerebral Palsy Day.

Types of Awareness Campaigns

Awareness campaigns fall under three categories:

  • Day- this is often held on the same day each year regardless of the day it falls under. There are cases where an awareness day falls on a specific day such as the last Thursday of a month.
  • Week – The dates dates change and vary based on the week. In some cases, awareness activities are held on the first week of the month to the fourth week of the month
  • Month- activities and awareness celebrations are held throughout the month.
The 2021 calendar includes major special needs awareness days, weeks, and months. Most websites include awareness toolkits, promotional material and fact sheets. This page focuses on awareness activities that impact people with intellectual and developmental disabilities. Click on the month below to go to a specific month.
January /February/March/ April/ May/June/July/September/October/November/December

January     

Louis Braille

                                             

January (Month)

National Birth  Defects Month

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

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February

February (Month)

Turner Syndrome Awareness Month

February (Week)

February 7-14 Congenital Heart Defect Awareness Week

February 8-12 Feeding Tube Awareness

February (Day)

February 15- International Angelman Day

February 28- Rare Disease Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

March

March (Month)

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March (Week)

March 21-27- Poison Prevention Week

March (Day)

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

April

April (Day)

April 2- World Autism Awareness Day 

April 7- Paraprofessional Appreciation Day

May

Better Hearing and Speech Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

National Osteoporosis Awareness and Prevention Month

National Mobility Awareness Month

Prader Willi Syndrome Awareness Month

Williams Syndrome Awareness Month

May (Week)

May 5-12- Cri du Chat Awareness Week

May (Day)

May 1- Global Developmental Delay Day

May 5- World Asthma Day

May 14- Apraxia Awareness Day

May 19- National Schizencephaly Awareness Day

May 15- Tuberous Sclerosis Global Awareness Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

June

June (Month)

Aphasia Awareness Month

Tourette Syndrome Awareness Month

June (Week)

Helen Keller Deaf-Blind Awareness Week (Last Sunday in June)

June (Day)

June 7- Tourette Syndrome Awareness Day

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

 

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

July

July (Month)

National Cleft and Craniofacial Awareness and Prevention Month

National Fragile X Syndrome Awareness Month

July (Day)

July 18- Disability Awareness Day (UK)

July 22- National Fragile X Syndrome Awareness Day

July 26- American Disability Act Day

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September

September (Month)

Chiari Awareness Month

Craniofacial Acceptance Month

Cortical Visual Impairment (CVI) Awareness Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

October

ADHD Awareness Month

Disability History Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October (Day)

October 6- World Cerebral Palsy Day

October 15- White Cane Awareness Day

October (Week)

October 13-19 Invisible Disabilities Week

Rett Syndrome Awareness Month

Spinal Bifida Awareness Month

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

November

22q Awareness Month

Epilepsy Awareness Month

November 1- LGS Awareness Day

November 7- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

December

December 3- International Day of Persons with Disabilities

December 1-7- Infantile Spasm

Updated 1/5/2021

What is 22q11.2 Deletion Syndrome?

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22q11.2 deletion syndrome, is a rare disorder that is caused by a deletion in chromosome 22 located specifically in the middle of the chromosome in the area referred to as 22q11.2. This syndromes affects 1 out of 4000 people and signs and symptoms include, developmental delays, poor muscle tone, learning development, feeding issues and hearing loss.

Similar Names

  • Cayer Cardiofacial Syndrome
  • Conotruncal Anomaly Face Syndrome(CTAF)
  • DiGeorge Syndrome (DGS)
  • Microdeletion 22q11.2
  • Monosomy 22q.11
  • Opitz G/BBB Syndrome
  • Sedlackova Syndrome
  • Shprintzen Syndrome
  • Takao Syndrome
  • Velo-Cardio-Facial Syndrome (VCFS)

History

  • 1955- First appear in medical literature by Dr. Eva Sedlackova who described a number of cases of children with hypernasal speech and reduced facial animations.
  • 1965- Dr. Angelo DiGeorge described congenital absence of the thymus gland in 4 patients.
  • 1968- Dr William Strong reported an association of cardiac abnormalities.
  • 1981- Dr. Shimizu of Japan noticed similarities between patients diagnosed with CTAF and DiGeorge Syndrome
  • 1982- Dr’s Richard Kelley, Elaine Zacker and Beverly Emanuel at the Children’s Hospital in Philadelphia discovered that some patients had a rearrangement of chromosome 22 thus causing a piece of the long arm (q11.2) to be missing

Associated Conditions

  • cardiac anomalies
  • cleft palate
  • kidney abnormalities
  • language delays
  • learning challenges
  • developmental delays
  • feeding disorders
  • autism
  • ADHD
Learning Challenges Include:
  • Poor Working and short term memory
  • Difficulty with math reasoning
  • Difficulty with reading comprehension
  • Fine motor and perceptional skills

Instructional Teaching Strategies:

Attention Skills Strategies

Spring Fine Motor Activities

Updated 1/7/2021

 

 

What is Cri Du Chat Syndrome?

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Cri-Du Chat, French for cry of the cat is a rare genetic disorder that occurs when there is a total or short deletion in the short arm of Chromosome 5. This portion of the chromosome is responsible for intellectual disability while the region of 5p15.3 is associated with speech delays and the high-pitched cat cry.  The high pitch cry is similar to the sound of a cat mewing which generally disappears after a few months or years in some cases. It is believed this is due to laryngeal alterations.

Although cri du chat is a rare syndrome, it is considered one of the most common syndromes in children and adults. There is an incidence of 1 in 50,000 live births and affects all ethnic and racial backgrounds.

Signs and Symptoms

Physical signs and symptoms include:

  • microcephaly
  • large nasal bridge
  • down-turned corners of the month
  • low-set ears

Other signs and symptoms include:

  • Intellectual disability
  • Hypertonia
  • Global and developmental delays
  • Speech and communication delays
  • Behavior challenges
  • Hypersensitivity.

Early Development

Studies show that in early development, during the first two years, children display issues with dysphasia, muscle hypotonia, and gastroesophageal and nasal reflux. Other early issues include recurrent respiratory infections and psychomotor issues.

Intellectual Disability

An intellectual disability is defined by the ICD-9 as a disorder with onset during the development period including both intellectual and adaptive functioning deficits. People with cri du chat typically fall under the moderate and severe range requiring personal care involving eating, dressing, and hygiene as well as self-care and monitored for self-injury.

Behavior Challenges

Behavior challenges among children and adults with cri du chat include aggressive and self-injurious behavior as well as hyperactivity. A study conducted by Cornish and Pigram (1996) found that there was one characteristics that occurred in more than 75% of the group and none characteristics that occurred in more than 50% of the group including hypersensitivity, to sensory stimuli, self0injurious behavior, repetitive movements, stubbornness and object attachment.

Health sites and  that provide information on Cri Du Chat including symptoms, diagnoses, definition and prevalence.

  1. National Institute of Health
  2. Wikipedia
  3. National Human Genome Research Institute
  4. Learn Genetics
  5. Medscape.com

Organizations

  1. International Cri Du Chat
  2. Five P Minus Society

Updated 1/6/2021

2021 Special Needs Awareness Observance Calendar

Posted on by
Download printable here: 2021 Special Needs Awareness Observance Calendar 
Did you know that 1 in 6 or 15% of  children aged 3 through 17 have one or more developmental disabilities? Or that according to the World Health Organization (WHO) that over a billion people live with some form of disability? This means that nearly 1 in 7 people on Earth have some form of a disability. For this reason, disability awareness and acceptance is more important now than ever before.

What is the Purpose of Disability Awareness?

Disability awareness serves many purposes including informing and educating people on a certain cause.  In some cases organizations and agencies use it as part of their annual campaign in an effort to bring awareness and raise money for their cause. Employers often conduct trainings on disability awareness as an effort to educate employees and to decrease bullying in the workplace. Disability awareness also can be used to address myths, misconceptions and the realities of having a disability.  Ribbons are also used that are specific to awareness activities. Through disability awareness campaigns it is hoped that people learn and develop a greater understanding of those with a disability. Annual awareness observances are sponsored by federal, health and non-profit organizations. In some cases observances are worldwide including World Autism Awareness Day or World Cerebral Palsy Day.

Types of Awareness Campaigns

Awareness campaigns fall under three categories:

  • Day- this is often held on the same day each year regardless of the day it falls under. There are cases where an awareness day falls on a specific day such as the last Thursday of a month.
  • Week – The dates dates change and vary based on the week. In some cases, awareness activities are held on the first week of the month to the fourth week of the month
  • Month- activities and awareness celebrations are held throughout the month.
The 2021 calendar includes major special needs awareness days, weeks, and months. Most websites include awareness toolkits, promotional material and fact sheets. This page focuses on awareness activities that impact people with intellectual and developmental disabilities. Click on the month below to go to a specific month.
January /February/March/ April/ May/June/July/September/October/November/December

January     

Louis Braille

                                             

January (Month)

National Birth  Defects Month

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

February

February (Month)

Turner Syndrome Awareness Month

February (Week)

February 7-14 Congenital Heart Defect Awareness Week

February 8-12 Feeding Tube Awareness

February (Day)

February 15- International Angelman Day

February 28- Rare Disease Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

March

March (Month)

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March (Week)

March 21-27- Poison Prevention Week

March (Day)

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

April

April (Day)

April 2- World Autism Awareness Day 

April 7- Paraprofessional Appreciation Day

May

Better Hearing and Speech Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

National Osteoporosis Awareness and Prevention Month

National Mobility Awareness Month

Prader Willi Syndrome Awareness Month

Williams Syndrome Awareness Month

May (Week)

May 5-12- Cri du Chat Awareness Week

May (Day)

May 1- Global Developmental Delay Day

May 5- World Asthma Day

May 14- Apraxia Awareness Day

May 19- National Schizencephaly Awareness Day

May 15- Tuberous Sclerosis Global Awareness Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

June

June (Month)

Aphasia Awareness Month

Tourette Syndrome Awareness Month

June (Week)

Helen Keller Deaf-Blind Awareness Week (Last Sunday in June)

June (Day)

June 7- Tourette Syndrome Awareness Day

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

 

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

July

July (Month)

National Cleft and Craniofacial Awareness and Prevention Month

National Fragile X Syndrome Awareness Month

July (Day)

July 18- Disability Awareness Day (UK)

July 22- National Fragile X Syndrome Awareness Day

July 26- American Disability Act Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

September

September (Month)

Chiari Awareness Month

Craniofacial Acceptance Month

Cortical Visual Impairment (CVI) Awareness Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

October

ADHD Awareness Month

Disability History Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October (Day)

October 6- World Cerebral Palsy Day

October 15- White Cane Awareness Day

October (Week)

October 13-19 Invisible Disabilities Week

Rett Syndrome Awareness Month

Spinal Bifida Awareness Month

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

November

22q Awareness Month

Epilepsy Awareness Month

November 1- LGS Awareness Day

November 7- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

December

December 3- International Day of Persons with Disabilities

December 1-7- Infantile Spasm

Updated 1/5/2021

Developmental Disability Awareness Ribbons

Posted on by

Awareness ribbons in recent history began when Penney Laingen used the ribbon as a symbol of vigilance ( from the song, Tie a Ribbon Around the Ole Oak Tree) when she tied a yellow ribbon around the oak tree in her front yard when her husband, Bruce Laingen. a top-ranking U.S. diplomat was a hostage during the Iran hostage crisis in 1979. This was followed by the red ribbon during the AIDS epidemic and the pink ribbon bringing awareness to breast cancer.

Ribbons have long been used as a way to bring awareness and raise consciousness for a cause. Ribbons and disability awareness have evolved from bringing awareness to various disability topics such as sensitivity, inclusion and advocacy to including various formats. People are using social media as a means to promote awareness including using hashtags and setting up Facebook pages specifically for disability awareness.

Disability awareness and acceptance is being done through the use of awareness ribbons.

The Ribbons below focus on ribbons that bring awareness to developmental disability and special needs issues.  including individuals with neurodevelopmental and intellectual disabilities. Awareness is only a part of educating and training people on disability awareness. Training activities should also include acceptance and understanding.

Awareness Ribbons

Autism Spectrum Disorder- The Autism ribbon continues to evolve overtime. The puzzle piece was first used in 1963 by a parent and board member of the National Autistic Society in London indicating the puzzling, confusing nature of autism. In 1999, the puzzle piece ribbon was adopted as the universal sign of autism awareness by the Autism Society reflecting the complexity of the autism spectrum. Overtime, the both the puzzle and ribbon have become a symbol for seeing autism as something that is puzzling an needs to be fixed rather than acceptance. A more positive symbol includes the infinity loop used as a symbol for acceptance rather than awareness.

Angelman Syndrome- Blue

Apraxia- Light Blue

Attention Deficit Hyperactivity (ADHD)- Orange

Cerebral Palsy- Green

Cri Du Chat- Blue

Developmental Disabilities- Silver or light blue

Di George Syndrome- Teal

Down Syndrome- Blue and Yellow

Dravet Syndrome- Purple

Duchenne Muscular Dystrophy- Light Green

Epilepsy- Purple

Fetal Alcohol Syndrome Disorder- Silver and Blue

Fragile X Syndrome- Teal

Hydrocephalus- Light Blue

Prader Willi- Orange

Rare Disease- Zebra Stripe

Rett Syndrome- Purple

Sensory Processing Disorder- Blue or Orange

Sickle Cell Anemia- Burgundy

Spina Bifida- Yellow

Spinal Cord Injuries- Green

Tourette Syndrome- Teal

Trisomy 18- Light Blue

Turner Syndrome Purple Butterfly

Williams Syndrome- Burgundy

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Burgundy Awareness Ribbon

  • Sickle Cell Anemia
  • Williams Syndrome

 

Blue Awareness Ribbon

  • Angelman Syndrome
  • Cri Du Chat

Green Awareness Ribbon

  • Cerebral Palsy
  • Spinal Cord Injuries

Light Blue Awareness Ribbon

  • Apraxia
  • Developmental Disabilities
  • Hydrocephalus
  • Intellectual Disabilities
  • Trisomy 18

Orange Awareness Ribbon

  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Prader Willi Syndrome
  • Sensory Processing Disorder

Teal Awareness Ribbon

  • Fragile X Syndrome
  • DiGeorge Syndrome
  • Tourettte Syndrome

 

 

 

Purple Awareness Ribbon

  • Dravet Syndrome
  • Epilepsy
  • Rett Syndrome
  • Turner Syndrome

Blue and Yellow Awareness Ribbon

  • Down Syndrome

Light Green Awareness Ribbon

  • Duchenne Muscular Dystrophy

 

Silver and Blue Awareness Ribbon

  • Fetal Alcohol Syndrome Disorder

Yellow Awareness Ribbon

  • Spina Bifida

Observance and Awareness Month

February

Turner Syndrome Awareness

March

Trisomy18

Kidney Awareness

Multiple Sclerosis

Cerebral Palsy

Developmental Disabilities

April

Autism

Auditory Processing Disorder

May

Apraxia

Cri Du Chat

Cystic Fibrosis

Williams Syndrome

June

Dravet Syndrome Day

July

Fragile X Syndrome

National Craniofacial Awareness and Prevention Month

September

Duchenne Muscular Dystrophy Day

Hydrocephalus

Sickle Cell Anemia

Spinal Cord Injuries

October

ADD/ADHD

Down Syndrome

Rett Syndrome

Sensory Processing Disorder

November

DiGeorge Syndrome

Epilepsy

 

Updated 1/2/2021

Six Things to STOP Saying to your (ADHD) Kids

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Published by: Impact ADHD

Written by: Elaine Taylor Klaus

One of the most common questions I hear from parents – in coaching sessions, on training calls – is, “How do I say that so that my child will respond?” How do you give your kids directions without triggering a reaction? How do you get them to do their homework without starting a fight? You know the challenges – the list could go on all day.

While there is a lot of guidance Diane and I teach about how to communicate with our kids in a way that fosters connection and independence, sometimes we have to start by breaking old habits. It is every bit as important to pay attention to what we DON’T want to say to our kids, as it is to what we DO want to say. Click here to read the rest of the story.

Emergency Room and Special Needs

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Autism-friendly emergency department provides comfort and familiarity for individuals with autism

Children and youth with special healthcare needs in emergencies

Creating an autism-friendly emergency room department

Emergency department management of children with cerebral palsy

Improving emergency care for adults with developmental disabilities

Hospital initiative strives for an autism-friendly patient experience

Slowing down emergency rooms to improve autism care

The hospital emergency room and autism spectrum disorder

Things to consider when bringing your child with special needs to the emergency room

Treating children with special needs in the emergency room

Accommodating Students with Executive Functioning Disorders

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Classroom accommodations for executive function difficulties– Center on Technology and Disabilities.

Classroom accommodations for executive functioning issues– Understood

Executive Function Disorder and Education– The Beckman School

Executive Function Skills: Accommodations for your child at school- Psychological and Educational Consulting

Executive functioning measurable IEP goals, accommodations and strategies- A Day in Our Shoes

Autism and seizures may share roots in development

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Published by Spectrum News
Written by: Peters Hess

Early behavioral signs predict seizures in autistic children, according to a new study1.

Previous work has shown that 5 to 46 percent of people with autism experience seizures. And autistic adults with epilepsy have, on average, less cognitive ability and weaker daily living skills than their autistic peers who do not have seizures2.

The new study shows that people with autism who begin having seizures during childhood show small but significant behavioral differences before they ever experience a seizure, compared with those who do not develop epilepsy. They score lower than their peers on measures of quality of life and adaptive behaviors, which include communication, daily living skills, socialization and motor skills. They score higher on a measure of hyperactivity.

The results suggest that seizures and certain behavioral issues in autism could have common origins, says co-lead investigator Jamie Capal, associate professor of pediatrics and neurology at the University of North Carolina at Chapel Hill.

“I think it really does show us that in individuals with autism who eventually have epilepsy, there is some shared mechanism early on that we just haven’t been able to identify,” Capal says. Click here to read the rest of the story.

What is Cerebral Palsy?

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What is Cerebral Palsy?

Cerebral Palsy is a collection of motor disorders resulting from damage to the brain that can occur before, during and after birth. Congenital cerebral palsy indicates that a person developed cerebral palsy at birth which is the case of the majority of people with cerebral palsy. According to the Centers for Disease Control and Prevention (CDC), Cerebral Palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood. It is estimated that an average of 1 in 345 children in the U.S. have cerebral palsy. For many years, it was thought cerebral palsy was due to lack of oxygen. Studies show this only accounts for 19% of all cases.

Prevalence and Characteristics
  • Around 764,000 people in the United states have at least one symptom of cerebral palsy
  • Around 10,000 babies are born each year with cerebral palsy
  • Boys are diagnosed more often than girls
  • Cerebral palsy is the mot commonly diagnosed childhood motor disability in the United States
  • Over 77% of children with cerebral palsy have the spastic form
  • More than 50% of all children with cerebral palsy can walk independently
  • African American children with cerebral palsy are 1.7 times more likely to need assistance with walking or be unable to walk at all
  • Around 41% of babies and children with cerebral palsy will have limited abilities in crawling, walking and running.
  • Around 41% children with cerebral palsy in the United states have some form of a cognitive disorder
  • Behavior problems are common in children with cerebral palsy including social skills and anger issues.
  • Seizures are a common associate disorder of cerebral palsy and can range from mild to extreme severe.
  • There is no known cure
What Causes Cerebral Palsy?

Studies show that about 10 to 20 percent of children with cerebral palsy acquire the disorder after birth. This includes through infections, jaundice, RH incompatibility and severe oxygen shortage in the brain.

Types of Cerebral Palsy

Ataxic- indicates the muscle tone is too low or too loose

  • affects 5 to 10 percent of people with cerebral palsy
  • movements are unsteady and shaking
  • have difficulty making quick movements

Spastic- refers to the inability of  muscle to relax

  • is the most common type of cerebral palsy
  • 70-80% of people have spastic cerebral palsy
  • will have difficulty moving from one position to another

Athetoid-uncontrolled twisting movements

  • Affects 10 to 20% of people with cerebral palsy
  • often have difficulty holding themselves in an upright position
  • muscles move involuntarily causing limbs to twitch

Teaching Strategies for Executive Function Disorder

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According to CHADD org, Executive function skills refers to brain functions that activate, organize, integrate and manage other functions which enables individuals to account for short- and long term consequences of their actions and to plan for those results.

The following resources provides strategies on teaching students with executive function disorder skills:

10 tools to help teachers develop Executive Function classroom skills-The Edvocate

Activities Guide: Enhancing and practicing executive function skills with children from infancy to adolescence- Center on the Developing Child

Addressing Executive Function at the secondary level– Atlanta Public School

Executive Function in the classroom: Neurological Implications for Classroom Intervention– Reading Rockets

Executive Functioning Strategies for the Classroom– Pathway 2 Success

How to address executive function skills in the classroom-eschool news

Standard Interventions for Executive Functions– PDF Format

Teaching students with executive functioning issues– Resilient Educator

Treatment and strategies for weak executive function– Additude

What you should know about severe autism

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Media is slowly getting better in it’s portrayal of people with autism in both movies and television, while many still hold onto to the perception of “Rain Man”, I do believe we are moving in the right direction. Still, little is discussed or talked about when it comes to children and adults with severe autism. Some may refer to severe autism as “low functioning when in fact autism is a spectrum in both symptoms and behaviors and varies from person to person.

Children and adults with severe autism often display the following signs :

  • Impaired social interaction
  • Difficulty in communicating- both expressive and receptive
  • Obsessive compulsive disorder
  • anxiety
  • aggressiveness
  • self-injurious

According to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there are 3 levels of severity based on social communication impairments, restricted, and patterns of behaviors. The severity level (Level 3) is defined as requiring very substantial support. For example the person may exhibit very limited initiation of social interaction and extreme difficulty with coping and change. signs may include an indifference in others, using negative behavior to communicate, very little or echolalia, sensory sensitivity will vary from severe to none, may be self-injurious and have an intellectual disability.  Below you will find articles on understanding severe nonverbal autism:

5 nonverbal children that found their voices

Autism: How do you communicate with a non-verbal child

Helping nonverbal kids to communicate

I have nonverbal autism…Here is what I want you to know

Nonverbal autism: Symptoms and treatment activities

Missing brain wave may explain language problems in nonverbal autism

Overview of nonverbal autism

What can we learn from studying severe autism?

What makes severe autism so challenging?

Why being nonverbal doesn’t mean being non-capable

Why children with severe autism are overlooked?

Updated 8/23/2020

9 Rare Genetic Trisomies Beyond Down Syndrome (Trisomy 21)

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Published by: Very Well Health
Written by:  Kathleen Fergus

Trisomy is when three copies of a chromosome are present instead of two (all chromosomes normally come in pairs). While most parents-to-be are familiar with Down syndrome and will undergo prenatal screening to detect it, there are other, potentially more serious trisomies that may occur, including Edwards syndrome, Patau syndrome, and others. Some may cause few, if any, symptoms, while others can lead to severe defects that make life—or even the pregnancy—unsustainable.

A gene is essentially a packaged bundle of chromosomes that contain all of the coded information related to our physiological makeup and metabolic function. Each gene typically contains 46 chromosomes, 23 of which we inherit from our mothers and fathers, respectively.

Of these, 22 pairs are autosomes, which determine our unique biological and physiological features. The 23rd pair is sex chromosomes (known as X or Y), which designate whether we are biologically female or male.

In rare instances, a coding error may occur when a cell divides during fetal development. Instead of splitting cleanly into the two identical chromosomes, the newly divided chromosome will have extra genetic material. This can lead to either a full trisomy (in which a complete third chromosome is created) or a partial trisomy (in which only part of the chromosome is copied). From this point forward, the error will be repeated and repeated as the cell continues to divide.

Down syndrome, the most common genetic disorder in humans is referred to as trisomy 21 because there is an extra copy of chromosome 21 in a gene. Other genetic disorders are similarly named.

Signs and Symptoms of Dysgraphia

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Early Signs of Dysgraphia

Signs and symptoms of dysgraphia generally begin to show up when children began to lean how to write. Early signs of Dysgraphia include:

  • Inconsistent spacing between letters
  • Poor spatial planning
  • Poor spelling
  • Unable to read own handwriting
  • Poor fine motor skills
  • Omitted words
  • Writes slow
  • Pain in hand from writing
  • Messy unorganized papers
  • Difficulty organizing thoughts on paper
  • Illegible printing and cursive letter formation
  • Slopping handwriting
  • Tight, cramped pencil grip
  • Tires quickly when writing
  • mixes upper and lower case or irregular sizes and shapes of letters.

Download a free dysgraphia checklist

An Overview of Absence Seizures

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Published by: Very Well Health
Written by: Reza Shouri, MD

An absence seizure, often referred to as petit mal seizure, is a non-convulsive seizure that is often not recognized as a seizure at all. Absence seizures usually occur in children who have epilepsy, but adults can have them as well. While absence seizures are not as disruptive or obvious as convulsive seizures, they cause impairment of consciousness and interfere with learning, driving, and other aspects of life.1

Absence seizures are typically a childhood condition. For children who do not have other types of seizures, absence seizures tend to stop on their own after adolescence. Often, children who have epilepsy characterized by multiple seizure types also experience a significant decrease in the absence seizure type after adolescence.1

Symptoms

Absence seizures can go unnoticed. They can occur several times a day and rarely cause disruption, noise, or clearly obvious manifestations. Sometimes, a person may experience them for months before others begin to take notice. Click here to read the rest of the story.

 

Accommodations for Students with Dysgraphia

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Dysgraphia is describes as a learning disability that affects writing, spelling and fine motor skills. Dysgraphia is a neurodevelopmental disorder that can occur as a stand alone disorder or part of a co-occurring disorder with other disabilities such as ADHD, Autism, and Dyslexia. Typically it is diagnosed or discovered in the early years when children are beginning to learn how to write. Most adults often remain undiagnosed.

Early Signs of Dysgraphia

Signs and symptoms of dysgraphia generally begin to show up when children began to lean how to write. Early signs of Dysgraphia include:

  • Inconsistent spacing between letters
  • Poor spatial planning
  • Poor spelling
  • Unable to read own handwriting
  • Poor fine motor skills
  • Omitted words
  • Writes slow
  • Pain in hand from writing
  • Messy unorganized papers
  • Difficulty organizing thoughts on paper
  • Illegible printing and cursive letter formation
  • Slopping handwriting
  • Tight, cramped pencil grip
  • Tires quickly when writing
  • mixes upper and lower case or irregular sizes and shapes of letters.

The following articles provide resources on accommodations:

6 tips for creating a dysgraphia-friendly classroom

A guide to classroom and at-home accommodations for dysgraphia

Classroom accommodations for students with dysgraphia

Dysgraphia Accommodations

Dysgraphia accommodations and modifications

Dysgraphia accommodations in the classroom

Dysgraphia accommodations that improve learning

Dysgraphia symptoms, accommodations, and IEP goals

How to assist a student with dysgraphia in the classroom

Possible accommodations to consider for children with dysgraphia

Cerebral Palsy and Secondary Issues

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Cerebral palsy affects people differently including; learning disabilities, intellectual disabilities, behavioral challenges, Attention Deficit Hyperactivity Disorder (ADHD), and Executive Function Disorder. People with cerebral palsy often have medical issues as well including, epilepsy, hydrocephalus, swallowing difficulties, vision problems, aspiration and constipation.

Seizures
  • a seizure is a sudden, out of control event that can cause involuntary movement.
  • It occurs when there are bursts of abnormal electrical activity in the brain which interferes with normal brain functioning.
  • The brain constantly sends unusual electrical messages very close together.
  • Inform the participants that seizures are the most common of associated problems.
  • Experts believe that seizures are the result of scarred tissue in the brain.
  • About 50% of people with cerebral palsy suffer from seizures.
  • Epilepsy is more common in the child with spastic quadriplegic
  • Complex partial seizures are the most common in people with cerebral palsy
  • in most cases, it is unknown the cause of seizures.

Cases which the cause is known include

  • Serious brain injury
  • Lack of oxygen
  • Bleeding in the brain
  • Infection in the brain including meningitis and encephalitis
  • Inflammation of the brain
  • Co-occurring conditions that involve an intellectual or developmental disabilities

Treating Seizures

  • Try to keep calm and make sure the person having the seizure is comfortable and safe from harm.
  • A seizure can last from a second or several minutes

Do Not:

  • Do not hold the person down or try to stop his or her movements.
  • Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
  • Do not try to give mouth-to-mouth breaths (CPR). People usually start breathing again on their own after a seizure.
  • Do not offer the person water or food until he or she is fully alert.

After the seizure:

  • After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest.
Vision Issues
  • The term blindness refers to complete impairment of vision
  • Visual impairment refers to diminished vison or low vision but not total blindness.
  • A person’s right side may include problems with muscles that control the right eye making it difficult for the affected eye to move from side to side.
  • People may appear to be crossed eyes.
  • Explain that people with cerebral palsy may have a condition called strabismus, where eyes do not line up and focus properly because of differences between the left and right eye muscles
  • May only impact one eye which happens to those whose cerebral palsy affect one side of the body.
Learning Disability
  • People with cerebral palsy may have a short attention span, motor difficulties, perceptual difficulties and language difficulties
  • This can impact literacy, numeracy and other important skills.
  • Learning disabilities may also affect fine and gross motor coordination
  • They may tire easily since they have to put more effort into concentrating on their movements and sequence of actions.
ADHD
  • A disorder of the executive function of the brain that allows a person to focus and organize
  • It is a developmental disability that occurs in approximately 3 to 5% of children
  • 19% of children with cerebral palsy will be diagnosed with ADHD
Hydrocephalus 
  • Enlargement of the fluid filled spaces in and around the brain known as ventricles
  • To correct the damaging effects, the fluid build-up is performed involving a shunt
Behavior Challenges
  • Children and adults with cerebral palsy may be more prone to having problems controlling their impulses as well as having difficulty with focus and attention
Hearing Loss
  • Birth injuries can cause partial or complete loss of vision and or hearing in many individuals
  • Possible result of physical damage to the ear due to inflammation of built-up
  • Senorineural hearing loss- nerves that transmit sound information from the outside world to the brain are damaged
Tube Feeding
  • Gastrostomy is used with children with significant eating, drinking and swallowing difficulties to ensure they received enough food and drink.
  • It is surgically placed through the abdominal wall to feed formula, liquids and medication directly to the stomach.
Intellectual Disability
  • Approximately 2/3 of people with cerebral palsy have an intellectual disability
  • 1/3 have Mild
  • 1/3- Moderate
  • 1/3- Normal IQ
  • Children with spastic quadriplegia are more likely to have an intellectual disability

Iowa autism advocate’s brush with police leads to proposed driver’s license designation

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Published by: Omaha World-Herald
Written by: Kathie Obradovich

Tyler Leech was leaving a church group’s bowling outing in West Des Moines one evening when he was pulled over by a police officer. A hard-rock party was going on nearby at the Val-Air Ballroom and there were a lot of police in the area.

Leech has autism. “The cop asked me, did I know that my tail light was out, and I looked at him all confused,” he said.

Before he knew it, the Des Moines man was out of the car, handcuffed and being subjected to a pat-down. The officer searched his pockets and asked if he’d been smoking marijuana.

“I told him no, ‘I’ve never smoked anything in my life,’” Leech said. He doesn’t even drink alcohol.

When no drugs turned up on Leech or in a search of the car, he was released. But the experience was traumatic, said his mother, Sheri Leech.

“He was embarrassed and ashamed and he didn’t even tell his dad it happened,” she said. “He felt very violated being handcuffed.”

She said the incident could have had a far worse outcome if her son had become frightened and tried to run, resisted being detained or tried to pull his phone out of his pocket. “My son could have been shot,” she said.

Tyler Leech, 27, decided to do something about that. Click here to read the rest of the story.

37 Helpful Epilepsy Resources

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November is Epilepsy Awareness Month!

Epilepsy Facts

  • It is the 3rd most common neurological disorder in the United States
  • 2.7 million Americans have epilepsy
  • 468,000 are children 0-17
  • 50 million people have epilepsy worldwide
  • 1 in 26 people have epilepsy in their lifetime
  • 200,000 people in the United States will be diagnosed with epilepsy this year

The following links include information on symptoms, causes, complications, definition, types of seizures, and treatment:

Medical

Boston Children’s Hospital- Epilepsy Center
Cleveland Clinic-Epilepsy Center
e-medicine health
Everyday Health
FamilyDoctor.org
Healthline
Kids Health
Live Science
Mayo Clinic
Medline Plus
Neuroscience for Kids
WebMD
World Heath Organization (WHO)

Organizations and Foundations

 American Epilepsy Society

Promotes research and education for professionals dedicated to the prevention, treatment and cure of epilepsy.

 Citizens United for Research in Epilepsy (CURE)

Cure’s mission is to cure epilepsy, transforming and saving millions of lives. Also identifies and funds research.

 Dravet Syndrome Foundation

Raises funds for research and increase awareness and provides support to individuals and families.

 Epilepsy Canada

Mission is to enhance the quality of life for persons affected by epilepsy through promotion and support of research and facilitation of education and awareness.

Image result for epilepsy foundation Epilepsy Foundation

National Voluntary agency dedicated solely to the welfare of more than 2 million people with epilepsy in the United States and their families.

 Epilepsy Research UK
A charity funding research into epilepsy, provides information about the condition and therapies, and their activities.
 Hope for Hypothalamic Hamartomas

A volunteer-based organization. The goal is to create information about the diagnosis, treatment, and support of individuals with HH.

 Intractable Childhood Epilepsy Alliance

Dedicated to improving lives of children affected by intractable epilepsy through evidence-based information and advocacy.

 Lennox-Gastaut Syndrome Foundation

Non-profit organization dedicated to improving the lives of individuals with Lennox-Gastaut Syndrome through research, programs and education.

  National Association of Epilepsy Centers

Strives to make high quality care available and affordable for epilepsy patients

Twitter -Keep up with the latest twitter feed or follow organizations that provide current information on epilepsy:

EPIC Long Island– Our very own non-profit organization of the month. Provides services for individuals with epilepsy and other disorders
Epilepsy Action– Leading member-led epilepsy charity providing information for people with epilepsy
Epilepsy Awareness– provides epilepsy training services to help raise standards and promote best practices.
My Epilepsy Team– Social network for people living with Epilepsy
Young Epilepsy– National charity working exclusively with children and young people in the UK

YouTube Video’s

Books on Epilepsy

Epilepsy: A patient and family guide

Epilepsy in Children: What every parent needs to know

Epilepsy 101: The ultimate guide for patients and families

Living well with epilepsy and other seizure disorders

Mommy, I feel funny! A child’s experience with epilepsy

 

 

 

 

What To Do When Someone Has A Seizure

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shutterstock_epilespy

Click here to download a printed version

Over a lifetime, 1 in 26 people will be diagnosed with epilepsy. More than 30% of people with epilepsy will experience generalized seizures. When providing first aid for seizures, try to keep calm and make sure the person having the seizure is comfortable and safe from harm.

Call 911 if:

  • The person has never had a seizure before.
  • the person has difficulty breathing or waking after the seizure.
  • The seizure lasts longer than 5 minutes.
  • The person has a seizure back- to- back.
  • The person is injured during the seizure.
  • The person has an additional condition like diabetes, or heart disease.
  • Ease the person to the floor.
  • Turn the person gently onto the side (this will help the person breathe).
  • Clear the area around the person of anything hard or sharp
  • Put something soft and flat, like a folded jacket, under his or her head.
  • Loosen ties or anything around the neck including button on a shirt.
  • Time the seizure.

Do Not:

  • Do not hold the person down or try to stop his or her movements.
  • Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
  • Do not try to give mouth-to-mouth breaths (CPR). People usually start breathing again on their own after a seizure.
  • Do not offer the person water or food until he or she is fully alert.

After the seizure:

After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.

Don’t try to stop the person from wandering unless he or she is in danger.

Don’t shake the person or shout.

Stay with the person until he or she is completely alert.

Source: Centers for Disease Control and Prevention

Source: National Institute of Neurological Disorders and Stroke

November Day Habilitation Monthly Activity Ideas

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An Overview of Doose Syndrome

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Published by: Very Well Health
Written by: Heidi Moawad, MD

Doose syndrome is a rare seizure disorder that begins during early childhood. This condition is also called myoclonic astatic epilepsy and myoclonic atonic epilepsy.

Doose syndrome is considered a type of generalized epilepsy. The seizures of Doose syndrome may be difficult to manage with medication. As children reach adolescence or adulthood, they may improve, and treatment might not be required anymore.

Epilepsy is a tendency to have recurrent seizures. Doose syndrome is an epilepsy syndrome. There are a number of different epilepsy syndromes. Epilepsy syndromes have certain characteristic features—such as the age at which the seizures begin, the type and frequency of seizures, associated symptoms, and a hereditary pattern. Click here to read the rest of the story.

Dyslexia and ADHD Comorbidly

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In some cases, dyslexia and ADHD coexist. According to the Centers for Disease Control (CDC), between 50 to 60 percent of people with ADHD also have a learning disability including dyslexia which is a language-based learning disability.

According to Learning Disability Online, Dyslexia is a language-based learning disability. Dyslexia refers to a cluster of symptoms, which result in people have difficulties in specific language skills. It affects 10% of children and there are challenges with writing and interpreting spoken language;

Signs and Symptoms:
  • delays in learning the alphabet, colors and objects
  • delayed vocabulary
  • delayed speech
  • difficulty comprehending instruction
  • disorganization
  • inability to recognize printed words and letters on printed page
  • difficulty remembering the sequence of things
Attention Deficit Hyperactivity Disorder (ADHD)

Attention Deficit Hyperactivity Disorder (ADHD)is a neurological disorder characterized by a pattern of inattention and/or hyperactivity-impulsivity that disrupts functioning in both children and adults

Signs and Symptoms

The DSM-V defines ADHD as a persistent pattern of attention and or hyperactivity-impulsivity that interferes with functioning of development. Inattention symptoms include the following:

  1. often fails to give close attention to details
  2. often has difficulty sustaining attention in task or play activities
  3. often does not listen when spoken to directly
  4. Often does not follow through on instructions
  5. Often has difficulty organizing task and activities often avoids, dislikes or is reluctant to engage in task that requires sustained mental effort.

Hyperactive symptoms include:

  1. trouble paying attention
  2. restlessness
  3. excessive talking
  4. loud interaction with others
  5. frequent interventions
  6. may have a quick temper

Having both can be tricky to diagnose since they overlap in similarities. For example, a child may have a messy handwriting with spelling issues due to both disorders or when reading, may simply get tired of reading due to ADHD or may not understanding the reading material.

Intervention
  1. If the child shows signs of ADHD and dyslexia disorders, an assessment should be conducted for both disorders.
  2. The IEP should also include support and accommodations for both disorders,

ADHD and Dyslexia– International Dyslexia Association

Dyslexia and ADHD: Identifying, understanding and treating reading disorders in children– Impact ADHD

My child’s Dyslexia and ADHD: How they blended together-Understood

The Dyslexia and ADHD connection– Additude

The link between dyslexia and ADHD– Very Well Mind

Two conditions, one struggle: Teaching students with ADHD and dyslexia- CHADD

ADHD and Co-Occurring Disorders- Fact Sheet

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Download Here: ADHD_occurring

What is Inattentive ADHD?

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When most people think of ADHD, hyperactivity is often what people think of. There are actually 3 subtypes of ADHD including hyperactivity, inattentiveness and a combination of both hyperactivity and inattentiveness.

There has been little research done on the inattentive type, however this is slowly changing. there are many reasons why the inattentive type is overlooked and why it is important to discuss it.  Studies show that females are more likely to have the inattentive type of ADHD. This type of ADHD is often ignored or overlooked due to its comorbidities. Females are more likely to have learning disorders such as dyscalculia (math learning difficulties) and dysgraphia (writing disorders), as well as anxiety, depression and speech and language issues.

Other challenges faced by children and adults with inattentive ADHD includes issues in executive functioning including difficulty in sequencing, staying on a task, prioritizing, and productivity.

According to DSM-V, a person must meet six of the nine symptoms listed below:

  1. fails to pay close attention to details or makes careless mistakes
  2. has difficulty sustaining attention in work or play
  3. does not listen when spoken to directly.
  4. fails to finish school work, chores or work duties
  5. has difficulties organizing activities
  6. avoids task requiring sustained mental effort
  7. loses things
  8. is easily distracted
  9. is forgetful.

Strategies in working with students with Inattentive ADHD:

  1. Allow enough time to complete work. students with Inattentive type take a longer in completing assignments and processing information
  2. Be specific and provide structure. Explain your expectations and ensure instructions are clear.
  3. Decrease distractions as much as you can
  4. Monitor for both depression and anxiety
  5. Help to build self-esteem
  6. Provide accommodations in areas of learning.
Resources

Medication response in children with predominantly inattentive type ADHD– Cincinnati Childrens’

Symptoms of Inattentive ADHD– Hill Learning Center

The other face of ADHD: Inattentive type- MDedge

What is ADD? Inattentive ADHD Explained– ADDitude

What to know about inattentive ADHD– Medical News Today

Understanding ADHD and Inattentive Type– Healthline

What is Obsessive Compulsive Disorder?

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Obsessive- Compulsive Disorder (OCD) is defined as a disorder that includes two core symptoms- obsessions and compulsions. According to the Census for Disease Control and Prevention (CDC), obsessions are defined by:

  • Thoughts, impulses, or images that occur over and over again. These thoughts, impulses or images are unwanted. They cause a lot of anxiety and stress.
  • The person who has these thoughts, impulses or images tries to ignore them or tries to make them go away.

Compulsions are defined as:

  • Repeated behaviors or thoughts over and over again or according to certain rules that must be followed exactly in order to make an obsession go away.
  • The person feels that the purpose of the behaviors or thoughts is to prevent or reduce distress or prevent some feared event or situation.

Spina Bifida Factsheet

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Download here: Spina Bifida

Down Syndrome and Sleep Apnea

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Obstructive Sleep Apnea Syndrome (OSAS) is considered one of the conditions affecting 2% to 4% of adults with Down syndrome and as they get older, the prevalence increases to 37% of men and 50% of women.

What is Obstructive Sleep Apnea?

It is a common disorder due to repetitive episodes of different breathing while sleeping due to upper airway collapse. The obstruction occurs when the muscles in the back of the throat fails to keep the airway open.

Signs and Symptoms

Signs of obstructive sleep apnea in individuals with Down syndrome include:

  • Snoring
  • Gasping
  • Excessive daytime sleeping
  • Daytime mouth breathing

According the Down Syndrome Association, the following techniques will help with sleeping during the night:

  • a nightly routine at bedtime
  • a bedroom that is free of distractions (e.g. cut out any unwanted light or noise)
  • regular sleeping hours
  • regular exercise and activities
  • avoidance of caffeine and other stimulants in the evening
  • avoidance of exercise in the evening.
Resources

Obstructive Sleep Apnea and Down Syndrome– NDSS

Obstructive sleep apnea in children with Down syndrome– Children’s Hospital Boston

Obstructive sleep apnea in children with Down syndrome– Massachusetts General Hospital

Obstruction sleep apnea in patients with Down syndrome: Current perspectives- NCBI

Sleep apnea confirmed common in children with Down syndrome– Cincinnati Children’s

 

Accommodations for Students with Dyscalculia

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What is Dyscalculia?

Dyscalculia is defined as a learning disability specifically in math and numbers including the inability to understand the concept of numbers and applying math principles to solve problems. The following are signs and symptoms of dyscalculia:

  • Difficulty in counting backwards
  • Difficulty in recalling facts
  • Slow in performing calculations
  • Difficulty with subtractions
  • Difficulty using finger counting
  • Difficulty with the multiplication table
  • Poor mental math skills
  • Difficulty with understanding the concept of time
  • May show signs of anxiety when conducting math activities
  • May have a poor sense of direction (i.e. north, south, east, west)
Early signs of dyscalculia include:
  • Delays in learning how to count
  • Delays in recalling facts
  • Difficulty with time
  • Displays a poor memory
  • May lose track when counting
  • Difficulty sorting items by groups include color, shape, texture and size.

A guide to the classroom and at-home accommodations for dyscalculia

Students with diagnosed with ADHD qualify for accommodations in the classroom. Here are a few resources:

Accommodations for students with dyscalculia– Adventures in Inclusion

Classroom accommodations for dyscalculia– Understood

How to help kids with dyscalculia- Child Mind Institute

How to treat the symptoms of dyscalculia– ADDitude