Teaching Students with Feeding Tubes: What You Need To Know

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.

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

 

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.

 

What is a Disability?

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 of Disabilities

Chromones/Genetic

Chromosomal disorders is the result of abnormalities with one of the 23 pairs of chromosomes. This can include an extra chromosome such as Down syndrome or a deletion in the chromosome.

Neurodevelopmental

Neurodevelopmental disorders are a group of disorders that affect the brain and the nervous system affecting learning, thinking and language. This includes autism, ADHD, learning disabilities and communication disorders.

Physical Impairments

Physical impairments include sensory impairments, musculoskeletal impairment, and neuromuscular impairments. This includes vision impairment, low back pain, mobility, hearing loss and arthritis.

Psychiatric

A mental disorder that limits a person’s ability to perform life activities including working, learning, and communication including anxiety, depression and bipolar disorders.

Chronic Disabilities

A life-long term health issue that can be physical or mental that last 1 year or more and requires ongoing medical assistance including heart disease, diabetes, and arthritis.

Sensory Disabilities

Affects how people process information from the senses including hearing impairment, autism spectrum disorder, and sensory processing disorder.

Cognitive Disabilities

Impairments that affect the way a person thinks, learns, remembers and makes decisions including intellectual disability, ADHD, learning disability, autism.

Invisible Disability

According to the Invisible Disabilities Association, the term invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunction, brain injuries, learning differences, mental health disorders, as well as hearing and visual impairments. They are not always obvious to the onlooker, but can sometimes or always limit daily activities range from mild challenges to severe limitations and vary from person to person

Updated 6/28/24

Rare Disease Day

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

 

Angleman Syndrome and Adulthood

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.

International Angelman Day

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

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?

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

Turner Syndrome Awareness Month

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

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

Purple Day for Epilepsy

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

 

Trisomy Awareness Month

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

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

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

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

 

Feeding Tube Awareness Week

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

April 2 is World Autism Day

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.

 

2021 Special Needs Awareness Observance Calendar

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

2021 Special Needs Awareness Observance Calendar

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

What is Obsessive Compulsive Disorder?

 

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.

Learning Disabilities Facts and Statistics

In the United States, 1.7 percent of the population reports having a learning disability, totaling 4.6 million Americans

Prevalence of reported learning disabilities is much higher among those living above poverty (2.6 percent) versus those living above poverty (1.5 percent)

Prevalence among whites, blacks, and Hispanics is about equal.

More than half of people with learning disabilities (55 percent) had some type of involvement with the criminal justice center.

1/3 of students have been held back in a grade at least once

46% of working-age adults with learning disabilities report being employed while 8% report being unemployed.

Only 5% of young adults with learning disabilities reported they were receiving accommodations in the workplace.

1 in 5 children in the United States have learning and thinking differences such as ADHD and dyslexia

More than half (54%) of the kids in special education have IEP’s for learning disabilities.

48% of parents believe incorrectly that kids grow out of learning differences

Up to 10 percent of the population are affected by specific by specific learning disabilities such as dyslexia and dyscalculia.

36 Epilepsy Facts You Should Know

Epilepsy is a disorder of the central nervous system often caused by abnormal electrical discharges that develop into seizures. The following are additional facts on epilepsy and seizures:

  1. More people live with epilepsy than autism, spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy combined.
  2. You can’t swallow your tongue during a seizure. It is physically impossible.
  3. You should never force something into the mouth of someone having a seizure.
  4. Don’t restrain someone having a seizure.
  5. Epilepsy is not contagious .
  6. Anyone can develop epilepsy.
  7. Epilepsy is not rare.
  8. 1 in 26 Americans will develop epilepsy in their lifetime.
  9. An estimated 3 million Americans and 65 million people worldwide live with epilepsy.
  10. In 2/3 of patients diagnosed with epilepsy, the cause is unknown.
  11. 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.
  12. Between 4 and 10 out of 1,000 people on earth live with active seizures.
  13. 3.4 million people in the United States have epilepsy.
  14. Epilepsy is not contagious
  15. 1/3 of people diagnosed with epilepsy have uncontrolled seizures because the available treatment does not work.
  16. SUDEP accounts for 34% of all sudden deaths in children.
  17. Epilepsy costs the U.S. approximately 15.5 billion each year.
  18. A seizure is a transient disruption of brain function due to abnormal and excessive electrical discharges in brain cells.
  19. Epilepsy is a disease of the brain that predisposes a person to excessive electrical discharges in the brain cell.
  20. It is diagnosed when 2 or more unprovoked seizures have occurred.
  21. It must be at least 2 unprovoked seizures more than 24 hours apart.
  22. About 14% have simple partial seizures.
  23. 36% have complex partial seizures.
  24. 5% have tonic-clonic seizures.
  25. Seizures can be caused by head trauma, stokes, brain tumor and a brain infection.
  26. Causes are unknown in 60 to 70% of cases.
  27. The prevalence is 1% of the U.S. population.
  28. Approximately 2.2 to 3 million in the U.S. have seizures.
  29. It affects all ages, socioeconomic and racial groups.
  30. Incidents are higher in children and older adults.
  31. Seizures can range from momentarily blanks to loss of awareness
  32. Almost 150,000 people in the U.S. develop epilepsy every year.
  33. No gender is likely to develop than others.
  34. 1/3 of individuals with autism spectrum disorders also have epilepsy.
  35. The prevalence of epilepsy in people with an intellectual disability is higher than the general population.
  36. It takes up to 5 times more energy for a person with epilepsy to complete even the most simple task.

Developmental Disability Data/Survey Resources

ADHD

ADHD and psychiatric comorbidity

ADHD throughout the years (CDC) 

National Prevalence of ADHD and Treatment

National survey of the diagnosis and treatment of ADHD and Tourette Syndrome -Survey about children aged 2 to 15 years old in 2011-2012.

What types of treatment do children with ADHD receive?

Autism

Autism Data Visualization Tool– prevalence estimates and demographic characteristics at the national, state and community levels (CDC)

CDC releases first estimates of the number of adults living with autism spectrum disorder in the United States

New ASD prevalence numbers show gaps are closing, but more work is needed

National Database for Autism Research– HealthData.Gov

Prevalence of self-injurious behaviors among children with autism spectrum disorders

Cerebral Palsy

Birth prevalence of cerebral palsy

Prevalence of cerebral palsy, co-occurring autism spectrum disorders, and motor functioning

Developmental Disabilities

Increase in developmental disabilities among children in the United States

Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disabilities, and vision impairment, Metropolitan Atlanta, 1991-2010

Mental Health

U.S. children with diagnosed anxiety and depression

Disability Awareness Resources

Lesson Plans

6 autism awareness activities for kids– suggested activities from the Family Education Website.

Disability Awareness: created by Learning to Give, provides service-learning project ideas related to disability awareness.

Disability Awareness Activities– a lesson plan through study.com. This site shows a sample of the lesson plan. In order to unlock the full course, you will be required to become a member by creating an account.

Disability Awareness Activities for Students of all Ages– a two-page handout developed by the PACER Center with a list of suggested activities teachers can use in the classroom

Disability Awareness: 10 things parents should teach their kids about disabilities- written by HuffPost. The article provides useful teaching information on motor disabilities.

Disability Awareness Class Activity Lesson Plans– provides various lesson plans and teaching activities on Autism, Communication Disorders, Learning Disabilities, Physical Disabilities, and General Disabilities

Disability Awareness Activity Packet– created by DVUSD Special Education, a printable download that provides activities and resources for teaching students about disabilities including role-playing activities.

Hosting a Disability Awareness Day– from Blogger, My Special Learners

Themed and Disability Education activities for children and adults created by the Indiana Governor’s Council for people with Disabilities. Provides discussion guides, speaker ideas and activities.

Tips for Disability Awareness– website provides information on the use of appropriate disability terms and ways to interact with a person with a disability.

Understanding Disabilities– a lesson plan from the Special Olympics organization. The lesson plan focuses on understanding perceptions of disabilities and how they affect people’s attitudes and beliefs.

Understanding Disabilities- from the Teaching Tolerance Organization, provides a lesson plan on helping students increase knowledge about people with disabilities and explore ways to communicate with people with disabilities.

Disability History

Disability History and Awareness: A Resource Guide

Disability Rights History

Timeline

The Disability Rights Movement

Sensitivity Training

Disability Awareness and Sensitivity Training– Richmond Centre for Disability

Disability Sensitivity Guide– National Disability Institute

Top 10 Trainings Every Bus Driver and Matron Should Have

Transporting a child with a disability to school on a bus is indeed a huge responsibility. For children with a disability, alertness matters as well ensuring bus drivers and matrons are trained on managing many issues that can arise on the bus. the following are the top ten trainings every bus driver and matron should have:

CPR. Although in adults cardiac arrest is often sudden and results from a cardiac cause, in children with cardiac arrest is often secondary to respiratory failure and shock. A CPR course will teach the sequence of steps for children including basic steps for calling for additional assistance.

First Aid. A course in first aid will train bus drivers and matrons steps to take in the case of an emergency. Children with disabilities have a variety of issues, taking a course in a first aid course can help to save a child’s life. Courses should include topics on choking, bleeding, injuries, allergic reactions, sudden illnesses and signs and symptoms.

Disability Awareness. This will  help both bus drivers and matrons identify and understand their own personal attitudes and perception regarding children and adults with disabilities.

Overview of Developmental Disability. Understanding the various types of developmental disabilities is vital in transporting children and adults from home to school. A course on developmental disability should include information on learning about the different types of disabilities,  including cognitive, physical and invisible. An overview should also include information on barriers that exist for people with disabilities.

Introduction to Epilepsy. Children and adults with disabilities tend to experience a high prevalence of epilepsy. Both drivers and matrons should be aware there are several types of seizures from generalize seizures to partial seizures. Some children experience seizures where it may appear they are simply staring. A training on epilepsy will teach ways to recognize the signs of epilepsy what do to in the event of a seizure while driving.

Understanding Behaviors. All behaviors have a meaning . It is a way of communicating for children and adults who may not have the ability to express pain, fear or anger verbally.

Bus Safety and Disabilities. Bus drivers are generally taught how to drive the bus or van in a safe manner. But what in instances when there is an emergency with children with disabilities on board? There should be training on emergencies that can occur on the bus including fires, accidents, and vehicle breakdown.

Recognizing Abuse. Studies show a large number of children with disabilities are abused and even larger numbers are bullied. a training course in recognizing abuse should cover not only looking for physical signs, but also children who are mistreated and neglected as well.

Safe Loading. Keeping children safe on the bus on van is one of the key responsibilities of the bus driver and matron. Some children with disabilities may use wheelchairs and other adaptive equipment. Trainings should include knowledge on using the wheelchair lift including the manual lift in the case of an emergency. Vital information includes safe securing of lap trays, electrical wheelchairs, vest of harness which should be monitored during the bus ride.

Overview of Autism. While no two students are alike. there are general characteristics that children with autism may exhibit including, anxiety, depression, seizure disorder, cognitive delays, sensory challenges and repetitive behaviors. Being well-informed of autism and how to mange will make the bus ride go smooth on those challenging days.

Can you think of any other important trainings bus drivers and matron should have when transporting a child with a disability?

 

 

It’s hard to imagine a time when children with disabilities did not have access or the rights to an equal education as those students without disabilities. Prior to 1975, many children with disabilities were living in large institutions or went to private schools.

President Gerald Ford signed into the Education For All Handicapped Children Act (Pubic Law-94-142) now knowns as the Individuals with Disabilities Education Act (IDEA). The purpose of IDEA is to protect the rights of infants, toddlers, children and youth with disabilities and to provide equal access to children for children with disabilities. The following list describes the 13 categories of IDEA eligibility including the definition below:

A child with a disability is defined as a child evaluated as having an intellectual disability, hearing impairment (including deafness), a speech or language impairment, visual impairment (including blindness), a serious emotional disturbance, an orthopedic impairment, autism, traumatic brain injury, an other health impairment, a specific learning disability, deaf-blindness, or multiple disabilities who need special education and related services.

  1. Autism means developmental disability significantly affecting verbal and nonverbal communication and social integration, generally evident before age 3, that adversely affect a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
  2. Deaf-blindness- defined as having both visual and hearing impairments. The combination of which causes such severe communication and other developmental and education needs that they cannot be accommodated in special education programs.
  3. Deafness- a hearing impairment that is so severe that the child is impaired in processing linguistic information through hearing, or with or without amplification, that adversely affects a child educational performance.
  4. Emotional disturbance- a condition exhibiting one or more of the following characteristics over a long period of time
  5. Hearing impairment- an impairment in hearing, whether permanent or fluctuating that adversely affects a child’s performance but that is not included under the definition of deafness.
  6. Intellectual disability- significantly lower general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affect a child’s educational performance.
  7. Multiple disabilities- A combination of impairments (such as intellectual disability-blindness or intellectual disability-orthopedic impairment). The combination causes severe educational needs that they cannot be accomplished in special education program solely for one of the impairments.
  8. Orthopedic impairment- a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly, impairments caused by diseases (e.g. Poliomyelitis) and impairment causes (e.g. cerebral palsy, amputations, and fractures or burns that cause contractures)
  9. Other health impairments- having limited strength, vitality, or alertness including a heightened alertness to environmental stimuli that results in limited alertness with respect to the educational environment that is due to chronic or acute health problems such as asthma, ADHD, diabetes, epilepsy, heart condition, sickle cell anemia and Tourette syndrome which adversely affects a child’s education performance.
  10. Specific learning  disability- a disorder in  one or more of the basic psychological processes involved in understanding or in using language spoken or written that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell or to do mathematical calculations including conditions such as perceptual disabilities, brain injury, dyslexia and developmental aphasia.
  11. Speech or language impairment- a communication disorder such as stuttering impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.
  12. Traumatic brain injury- An acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment or both. Traumatic brain injury applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition, language, memory, attention, reasoning, abstract thinking, judgement, problem-solving, sensory, perceptual motor abilities and information processing and speech.
  13. Visual impairment including blindness- an impairment in vision that, even with correction, adversely affects a child’s educational performance. The term includes both partial sight and blindness.

Facts and Statistics- Obsessive Compulsive Disorder (OCD)

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.

The following are facts and statistics on Obsessive Compulsive Disorder:

  • 1.2% of U.S. adults had OCD in the past year.
  • OCD was higher for females (1.8%) than males (0.5%).
  • Among adults with OCD, approximately one half (50.6%) had serious impairment
  • 34.8% of adults with OCD had moderate impairment
  • 14.6% had mild impairment.
  • OCD affects 2.2 million adults
  • The average onset is 19 with 25% of cases occurring by age 14
  • One-third of affected adults first experience symptoms in childhood
  •  17% of autistic people may specifically have OCD
  • Because of similar characteristics, it is often overlooked
  • It affects people of all races, ethnicities, and socioeconomic backgrounds
  • OCD is one of the top 20 causes of illness-related disability worldwide for individuals between 15 and 44 years of age
  • 1 in 40 adults are affected.
  • 1 in 100 children are affected
  • Other conditions may co-exist with OCD including anxiety, bipolar, ADHD, autism spectrum, Tourette syndrome, and major depressive disorder.
  • Worldwide, OCD is approximately 2% of the general population
  • OCD ranks 10th place among all diseases
  •  1 in every 200 children has the disorder 60 to 70% of OCD children improve significantly with therapy.
  • Many people still hide their OCD behaviors.
Beyond OCD.org
Healthy Place.org
National Institute of Mental Health

Facts and Statistics- Ataxia

Ataxia is a rare disorder that affects both children and adults. I was quite surprise to find that very little statistics have been conducted on ataxia. this may be due to the understanding that Ataxia is not a specific disorder, rather, a condition can cause ataxia including multiple sclerosis, head trauma, cerebral palsy and infections.

Ataxia affects a child’s coordination, balance and speech while some children are born with ataxia as a result of genetics, others develop it in a progressive matter. Signs and symptoms of Acute Cerebellar Ataxia include:

  • Frequent stumbling
  • Impaired coordination affecting arms or legs
  • Unsteady gait
  • Uncontrolled eye movement
  • Difficulty performing fine motor task
  • headaches

The following are facts and statistics on the Ataxia disorder:

  • It is a degenerative disease of the nervous system
  • Symptoms, often mimic being drunk in adults such as slurred speech
  • Age of symptom can vary from childhood to late adulthood
  • rare recessive genetic disorder
  • occurs between 1 out of 40,000 and 1 out of 100,000
  • The word ataxia refers to clumsiness or a loss of balance and coordination
  • The ataxia gene was first identified in 1993
  • Ataxia is inherited
  • Ataxia is a sign of an underlying disorder
  • It is caused by damage to different areas of the central nervous system
  • The most common symptom in children is an unsteady gait
  • In some cases, ataxia can present itself rapid while in others, it is progressive.
  • The most common cause of acute ataxia in children are excessive drug ingestion and drug intoxications
  • There are from 50 to 100 different types of Ataxia.

What is Hydrocephalus?

Some people refer to hydrocelphus as ‘water on the brain.” The name is taken from the greek words “hydro” meaning water and “cephalus” referring to the head. Hydrocephalus is actually a build up of cerebrospinal fluid (CSF) within the cavities in the brain inside the ventricles. The purpose of the Cerebrospinal fluid is to serve as a protective cushion surrounding the brain and the spinal cord.

The fluid moves in constant circulation and is then absorbed into the blood stream. Hydrocephaly occurs when the fluid begins to build up in the cavities causing excess fluid to increase in the ventricles adding pressure on the brain which can cause damage to the brain tissues.

Types

There are two major types of hydrocephalus:

Congenital. In this case, a child was born with it. The cause could be due to both genetic or environmental factors during the early stages of fetal development such as an infection or a birth defect or rubella.Through advanced technology, hydrocephaly can now be diagnosed through ultra sound testing

 

Acquired.  Occurs when it is developed after birth. It may be due to a brain tumor, stroke, head injury or meningitis

Communicating.  (Obstructive) Occurs when the CSF becomes blocked after leaving the ventricles

Non Communicating. (Non-Obstructive) occurs when the craniospinal fluid becomes blocked after leaving the ventricles.

How Autism And Visual Perception Affect Train Travel

Train operator GWR is now working for their second year in providing bespoke autism awareness raising sessions for their front line staff, allowing them to be better prepared to help people living with the condition use public transport.

Looking to provide the best possible experience for all passengers, GWR is working in collaboration for a second year with UK Autism charity Anna Kennedy Online increasing autism awareness to help its staff improve in meeting the needs of those travelling with autism.

For many with an Autism spectrum condition, some of the more commonly experienced issues is increased anxiety and sometimes overwhelming sensory processing information as well as the need for structure and reassurance. Click here to read the rest of the story.

15 Facts About Cri Du Chat Syndrome

Cri-Du Chat (cat’s cry) is a rare genetic disorder that results when a piece of the 5p chromosome is deleted. The name is French for “cry of the cat,” referring to the high-pitched cat-life cry. Other characteristics include intellectual disability, hyperactivity, and delay development. below are some more facts on this rare disease.

Click here to download PDF article

  • Cri du Chat is French for cat’s cry or crying cat
  • The syndrome gets its name from the infant cry which is similar to a meowing kitten
  • The cry is due to issues with the larynx and nervous system
  • About one third of children lose the cry by the age of 2 years.
  • It is also known as 5p- (5p minus)
  • The size of the deletion varies among affected individuals
  • Cri du chat syndrome is not inherited.
  • About 10 percent of people with cri du chat syndrome inherit it from an unaffected parent.
  • Is a chromosomal condition that results when a piece of chromosome 5 is missing
  • People diagnosed with cri du chat tend to have distinctive facial features
  • Occurs in an estimated 1 in 20,000 to 50,000 newborns
  • Cri du chat is found in  people of all ethnic backgrounds
  • It was first described by Jerome Lejeune in 1963
  • It is more common in females by a 4.3 ratio
  • It is a rare genetic disorder
  • In some cases, cri du chat syndrome may go undiagnosed
  • Children born with cri du chat syndrome are more likely to have developmental delays
  • The symptoms of cri du chat vary from person to person
  • Both children and adults with cri du chat are often seen as cheerful and friendly.

 

References

Genetic and Rare Diseases Information Center

National Organizations of Rare Diseases

Williams Syndrome and Teaching Strategies

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.

Click here to download PDF article

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

  • ADHD
  • Enjoys music
  • Developmental delay
  • Excellent long-term memory
  • Learning disability
  • Poor fine motor skills
  • Seizures
  • Tactile defensiveness

Teaching Strategies

Students with Mild intellectual disabilities will have difficulty with abstract thinking, executive functioning including planning, prioritizing, and cognitive flexibility. According to the Williams Syndrome Association Website, Children with Williams Syndrome face challenges with processing non-verbal information and displays difficulty with attention to detail.

Strategies should include:

  • Using short sentences
  • Repeat directions
  • Break task into small steps
  • Use concrete examples when introducing new words or concepts.
  • Teach one concept at a time
  • Use a multisensory approach which will help to stimulate learning
  • Utilize visual learning style including the use of flash cars, pictures, images, handouts and colors.

Reference

Williams Syndrome Association

Williams Syndrome- Facts and Statistics

Click here to download PDF article

May is Williams Syndrome Awareness Month. It is a rare genetic condition that affects over 1 in 10,000 people worldwide. If you teach in a special needs classroom or work in an adult day habilitation program, it is likely you have experienced working and teaching a student or individual diagnosed with Williams Syndrome. Below you will find some interesting facts and statistics on the disorder:

  • 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.

 

 

References

Genetics Home Reference

National Organizations for Rare Diseases

William Syndrome Association

Autism Facts and Statistics

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.

Click Here to download PDF article

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.


Source: Centers for Disease Control and Prevention

Facts

Children and adults with Autism have significant problems in socializing with others, emotions, intense preoccupation with one or two topics, repetitive routines and motor skills.

Tend to be sensitive to sensations of sound, light or touch.

It is a common myth that autistic children can perform amazing skills such as memorizing birthdays and telephone numbers.

30% of autistic children have a seizure disorder

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.

Between 60% and 80% of children with ASD have a sleep-related disorder

Females tend to be more likely to show accompany intellectual disabilities.

Studies show that parents notice a developmental problem before the child’s first birthday

Lorna Wing, a psychiatrist and mother of a child with autism termed the word Autism Spectrum to describe a concept of complexities rather than a straight line from severe to mild.

Victor Lotter was the first person to  measure the prevalence of autism in a population.

Autistic Women and Girls

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.

Image result for wandering autism

 

Reference

Centers for Disease Control and Prevention (CDC)

National Autism Association

Spectrum News

Developmental Disability Facts and Statistics

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.

Click here to download PDF Format

  • 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

National Institute of Health

10 Important Facts On Trisomy 18

Today is National Trisomy Awareness Day. Below are 10 important facts on Trisomy 18.

  • 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

 

25 Developmental Disability Links and Resources You Should Know About

March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobility-ability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

The following are links to articles on various types of developmental disabilities including resources with facts and statistics, organizations, and sign and symptoms.

22q11.2 Deletion Syndrome

27 things to know about Fragile X Syndrome

ADHD- facts and statistics

Angelman Syndrome

Angelman syndrome resources

Cri Du Chat Resources

Developmental disability acronyms you should know 

Developmental disability awareness ribbons

Down syndrome-facts and statistics

Down syndrome timeline

Duchenne Muscular Dystrophy

Early Intervention- Resources and Information

Edward Syndrome Resources

Global developmental delays

Intellectual Disability Resources

Over 30 online resources on Rett syndrome

Pervasive DD-NOS

Prader Willi Syndrome Resources

Resources for teaching students with Down syndrome

Ring Chromosome 22 Resources

Teaching self-regulation and autism spectrum disorder

Things to know about Angelman Syndrome

Turner Syndrome Characteristics

What is Prader Willi Syndrome?

William-Beuren Syndrome Resources

Intellectual Disabilities And Epilepsy

According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder and affects people of all ages. In fact, 1 in 26 people have seizures and while people who are diagnosed with epilepsy may have no other problems, this is not the case for children and adults with an intellectual and developmental disability where the rates are much higher.

Click here to download PDF format

It is estimated that 30% of children with epilepsy also have another type of disability. Some studies show that children with an intellectual disability and cerebral palsy, had a 35% chance of developing epilepsy, children with an intellectual disability alone had an 8% chance and children with a brain injury occurring after birth stood a 75% chance of developing epilepsy. Statistically, the risky of a child with a developmental disability experiencing an unprovoked seizure by age 5 is 4 times likely than the general population. It is estimated 1.8% of U.S. adults have epilepsy compared to 22% among people with intellectual disabilities.

People with intellectual disabilities tend to also have worse prognosis with adults having a higher rate of death including Sudden Unexplained Death In Epilepsy (SUDEP).

Epilepsy

Epilepsy is a chronic disorder with recurrent unprovoked seizures. According tot he National Institute of Neurological Disorders and Stroke (NINDS), epilepsys are a spectrum of brain disorders ranging from severe, life-threatening to ones that are more benign. The International League Against Epilepsy created a new definition of epilepsy. A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two provoked (or reflex) seizures occurring greater than 24 hours apart.
  2. One Unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome

A seizure is defined as an event and epilepsy is the disease involving recurrent unprovoked seizures.

Intellectual Disability

According to DSM-5, an intellectual disability is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual social, and practical domains including deficits in intellectual functions such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experiences.  The severity levels range from mild to profound.

Although there is a high relationship between epilepsy and an intellectual disability, little research has been conducted on safe prescribing practices of an antiepileptic drugs for people with intellectual disabilities. What is known about epilepsy and an intellectual disability is that more severe disabilities are typically caused by damage to the brain

Why is it important to discuss?

Given the large number of people with an intellectual disability and epilepsy, treatment may be more complicated due to multiple impairments including people with a diagnosis of autism, intellectual disability and epilepsy. More research needs to occur which will help to reduce morbidity rates and help to develop accurate guidelines.

2019 Disability Awareness Month and Observance Calendar

Annual awareness observances are sponsored by federal, health and non-profit organizations. Awareness campaigns serve the purpose of informing and educating people on a certain causes. Each year, the number of special needs organizations bringing awareness to specific disabilities and disorders seem to grow. Awareness activities range from one day to a month.
Here is a calendar of major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets. Since it is still early in the year, some of the campaigns still have 2018 campaigns on their websites. I will add new information once the changes are up on the websites.

January

National Birth  Defects Month

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

February

Turner Syndrome Awareness Month

February 15- International Angelman Day

February 28- Rare Disease Day

March

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

April

April 2- World Autism Awareness Day 

May

Better Hearing and Speech Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

May 1- Global Developmental Delay Day

May 15- Tuberous Sclerosis Global Awareness Day

May 5-12- Cri du Chat Awareness Week

May 8-14- Brain Injury Awareness Week

June

Aphasia Awareness Month

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

Tourette Syndrome Awareness Month

July

July 14- Disability Pride Parade (NY)

July 14- Disability Awareness Day (UK)

July 22- National Fragile X Awareness Day

September

Chiari Awareness Month

Craniofacial Acceptance 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 Awareness Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October 6- World Cerebral Palsy Day

October 15- White Cane Awareness Day

October 13-19 Invisible Disabilities Week

October 13-19 International OCD Awareness Week

National Physical Therapy Month

Rett Syndrome Awareness Month

Special Needs Law 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 Awareness Week

What is Lowe Syndrome?

Lowe Syndrome also known as Oculocerebrorenal 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.

Click here to download PDF version

Signs and Symptoms
  • Congenital cataracts
  • eye abnormalities and eye disease
  • glaucoma
  • kidney abnormalities (Renal Fanconi Syndrome)
  • dehydration
  • abnormal acidic blood
  • progressive kidney problems
  • feeding problems
  • bone abnormalities
  • scoliosis
  • weak or low muscle tone (hypotonia)
  • joint problems
  • developmental delays including motor skills
  • short stature
  • intellectual disability
  • seizure
  • behavioral issues

Children and adults diagnosed with children and adults may also show the following signs and symptoms due to an intellectual disability:

  • decrease learning ability
  • delays in crawling
  • delays in sitting up
  • difficulty solving problems
  • lack of curiosity
  • language and speech delays
  • poor memory
  • behavior problems
Teaching Strategies

The following strategies will help when teaching a child or an adult diagnosed with Lowe Syndrome:

  • Use short and simple sentences to ensure understanding
  • Repeat directions
  • Teach specific skills when possible
  • Use strategies such as chunking, backwards shaping, forward shaping and role modeling.
  • Use concrete information
  • Provide immediate feedback

Image thanks to Robert Thomson on Flickr.com (creative commons)

Resources

National Organization for Rare Disorders

Genetics Home Reference

Dove Med

Wikipedia

Teaching Strategies For Students With A Nonverbal Learning Disorder

Nonverbal Learning Disorder is a disorder you may or nay not heard of. It shares similar characteristics to autism such as the challenge in reading body language but is also quite different. By learning the signs and symptoms of nonverbal learning disorder, the better chance you have in using effective teaching strategies.

Nonverbal learning disorder is defines as a person who has difficulty in interpreting and understanding non verbal cues in the environment If 93% of how we communicate is nonverbal, a person with nonverbal learning disorder is only getting 7% of daily communication.

Dr. Byron P. Rouke of the University of Windsor developed the following criteria to assess nonverbal learning disorder:

  1. Perceptual deficits usually on the left side of the body. The child has difficulty understanding or perceiving information through the skin of both hands but the left hand has more difficulty than the right.
  2. Tends to be clumsy
  3. Difficulty with visual-spatial organizational skills. Finds it difficult to organize notes.
  4. Difficulty when encountering new information.
  5. Difficulty in knowing what is expected of you and hard to see the bigger picture
  6. Distort sense of time. Time is abstract and non-linear
  7. Well-developed, rote and verbal capacity
  8. Repetitive way of speaking
Signs and Symptoms
  • Excellent vocabulary and verbal expression
  • Excellent memory skills
  • unable to see the bigger picture
  • Poor motor and coordination skills
  • Difficulty with reading
  • Difficulty with math reading problems
  • Fear of new situations
  • May have symptoms of anxiety, depression
  • Misreads body language
  • Well-developed vocabulary
  • Better auditory processing skills than visual processing skills
  • Focus on details

Teaching Strategies For Parents and Teachers
  • Give assignments in chunks
  • Give constructive feedback
  • Create a daily class routine and stick to them
  • Write the class schedule on the board
  • Provide several verbal cues before transition
  • Give the student time to preview and prepare for new activities such as group projects
  • Minimize transitions
  • Offer added verbal explanations when the student or child seems confused
  • Teach in sequential steps
References

Rondalyn Varney Whitney/OTR, Nonverbal learning disorder: Understanding and coping with NLD and Aspergers: What parents and teachers need to know (2008)

Woliver, Robbie (2008) Alphabet Kids: From ADD to Zellwer Syndrome.

Learning Disabilities of America

Understood

Spina Bifida- Facts and Statistics

Click here to download PDF version

October is Spina Bifida Awareness Month. Spina Bifida is a birth defect that affects the spine and the spinal cord. The membranes surrounding the spinal cord do not close properly.

Facts and Statistics
  • Each year, about 1,500 babies are born with spina bifida.
  • There is no known cause
  • Accumulation of fluid in the brain affects 70% of children.
  • 40% of shunts fail or become in affected and need to be changed within a year.
  • It can happen anywhere along the spine if the neural tube does not close all the way.
  • Spina Bifida might cause physical and intellectual disabilities that range from mild to severe depending on the size and location of the opening in the spine.
  • Myelomeningocele is the most serious type of spina bifida.
  • Spina Bifida can be diagnosed during pregnancy or after the baby is born.
  • Some people with Spina Bifida may never experience symptoms
  • Spina Bifida occurs between the 3rd and 4th week of pregnancy.
  • Children with Spina Bifida may have difficulty with math, reading comprehension and learning.
  • Common challenges to learning include, fine and gross motor skills, spatial orientation, communication difficulties and attention and memory.
  • Some children with Spina Bifida also have attention deficit hyperactivity disorder (ADHD).
  • Hispanic women have the highest rate of having a child affected by spina bifida, when compared with non-Hispanic white and non-Hispanic black women. Data from 12 state-based birth defects tracking programs from 1997-2007 were used to estimate the total number of pregnancies affected by spina bifida compared to the total number of live births (also called the prevalence of spina bifida) for each racial/ethnic group:
    • Hispanic: 3.80 per 10,000 live births
    • Non-Hispanic black or African-American: 2.73 per 10,000 live births
    • Non-Hispanic white: 3.09 per 10,000 live births
Resources

March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-997-4488; 888-MODIMES (663-4637)
Fax: 914-428-8203

Spina Bifida Association
4590 MacArthur Blvd. NW
Suite 250
Washington, DC 20007-4266
sbaa@sbaa.org
http://www.spinabifidaassociation.org
Tel: 202-944-3285; 800-621-3141
Fax: 202-944-3295

References

Centers for Disease Control and Prevention

Children’s Hospital of Philadelphia 

Dyslexia- Facts and Statistics

Click here to download PDF version
Dyslexia is a learning disorder which makes it difficult for children and adults to read and learn new words.
Facts and Statistics
  • It is estimated that 1 in 10 people have dyslexia
  • Over 40 million American Adults are dyslexic – and only 2 million know it
  • Dyslexia is not tied to IQ – Einstein was dyslexic and had an estimated IQ of 160
  • Dyslexia in not just about getting letters or numbers mixed up or out of order
  • 80% of people associate dyslexia with some form of retardation – this is not true
  • Dyslexia is a language-based learning disability or disorder that includes poor word reading, word decoding, oral reading fluency and spelling
  • Dyslexia occurs in people of all backgrounds and intellectual levels
  • Dyslexia has nothing to do with not working hard enough
  • 20% of school-aged children in the US are dyslexic
  • With appropriate teaching methods, dyslexia can learn successfully
  • Over 50% of NASA employees are dyslexic
  • Dyslexia runs in families; parents with dyslexia are very likely to have children with dyslexia
  • Dyslexics may struggle with organizational skills, planning and prioritizing, keeping time, concentrating with background noise.

Prevalence

About 15-20 percent of the U.S. population has a learning disability.

  • 70-80% of people with poor reading skills, are likely dyslexic.
  • One in five students, or 15-20% of the population, has a language based learning disability. Dyslexia is the most common of the language based learning disabilities.
  • Nearly the same percentage of males and females have dyslexia.
  • Nearly the same percentage of people from different ethnic and socioeconomic backgrounds have dyslexia.
  • Percentages of children at risk for reading failure are much higher in high poverty, language-minority populations who attend ineffective schools.
  • In minority and high poverty schools, 70-80% of children have inadequate reading skills.
  • According to the National Assessment of Educational Progress (NAEP), 38% of all fourth grade students are “below basic” reading skills. They are at or below the 40th percentile for their age group.
  • Nationwide 20% of the elementary school population is struggling with reading.
  • National Center for Education statistics, 5% of all adults are “non-literate”.
  • 20-25% of all adults can only read at the lowest level.
  • 62% of non readers dropped out of high school.
  • 80% of children with an IEP have reading difficulty and 85% of those are Dyslexic.
  • 30% of children with Dyslexia also have at least a mild form of AD/HD.

 

Reference

Austin Learning Solutions

Dyslexia Center of Utah

Encyclopedia of Children’s Health 

 

October is Dyslexia Awareness Month

ADHD- Facts and Statistics

Click here to download PDF version
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
Facts and Statistics
  • ADHD is a condition characterized by inattentiveness, hyperactivity and impulsivity
  • It is one of the most common neurodevelopmental disorders of childhood
  • It is usually diagnosed in childhood and last into adulthood
  • People diagnosed with ADHD may have difficulty paying attention and or controlling impulsive behavior
  • 70% of people with ADHD in childhood will continue to have it in adolescence
  • 50% will continue into adulthood
  • ADHD is not caused by watching too much, parenting or having too much sugar
  • ADHD may be caused by genetics, brain injury or low birth weights
  • Is a highly genetic, brain-based syndrome that has to do with the brain regulation in executive functioning skills
Prevalence

UNITED STATES

Children & Adolescents

The 2016 National Survey of Children’s Health (NSCH) interviewed parents and reports the following ADHD prevalence data among children ages 2–17 (Danielson et al. 2018):

  • 6.1 million children (9.4 percent) have ever been diagnosed with ADHD. This includes:
    • About 388,000 young children ages 2-5 (or 2.4 percent in this age group)
    • 2.4 million school-age children ages 6-11 (or 9.6 percent in this age group)
    • 3.3 million adolescents ages 12-17 (or 13.6 percent in this age group)
  • 5.4 million children (8.4 percent) have a current diagnosis of ADHD. This includes:
    • About 335,000 young children ages 2-5 (or 2.1 percent in this age group)
    • 2.2 million school-age children ages 6-11 (or 8.9 percent in this age group)
    • 2.9 million adolescents ages 12-17 (or 11.9 percent in this age group)
  • Treatment used by children ages 2-7 with a current diagnosis of ADHD:
    • Two out three were taking medication (62 percent).
    • Less than half received behavioral treatment in the past year (46.7 percent).
    • Nearly one out of three received a combination of medication and behavioral treatment in the past year (31.7 percent).
    • Nearly one out of four had not received any treatment (23 percent).
  • Severity of ADHD among children ages 2-17:
    • 14.5 percent had severe ADHD
    • 43.7 percent had moderate ADHD
    • 41.8 percent had mild ADHD
  • Co-occuring conditions (children ages 2-17):
    • Two out of three children (63.8 percent) had at least one co-occuring condition.
    • Half of all children (51.5 percent) had behavioral or conduct problems.
    • One out of three children (32.7 percent) had anxiety problems.
    • One out of six children (16.8 percent) had depression.
    • About one out of seven children (13.7 percent) had autism spectrum disorder.
    • About one out of 80 children (1.2 percent) had Tourette syndrome.
    • One in a hundred adolescents (1 percent) had a substance abuse disorder.
  • By race or ethnicity (children ages 2-17):
    • 8.4 percent White
    • 10.7 percent Black
    • 6.6 percent Other
    • 6.0 percent Hispanic/Latino
    • 9.1 percent Non-Hispanic/Latino

Adults with ADHD

  • 4.4 percent of the adult US population has ADHD, but less than 20 percent of these individuals seek help for it.
  • 41.3% of adult ADHD cases are considered severe.
  • During their lifetimes, 12.9 percent of men will be diagnosed with ADHD, compared to 4.9 percent of women.
  • About 30 to 60 percent of patients diagnosed with ADHD in childhood continue to be affected into adulthood.
  • Adults with ADHD are 5 times more likely to speed
  • Adults with ADHD are nearly 50 percent more likely to be in a serious car crash.
  • Having ADHD makes you 3 times more likely to be dead by the age of 45
  • Anxiety disorders occur in 50 percent of adults with ADHD.
Reference

Additude Magazine

CHADD- National Resource Center on ADHD

 

 

Down Syndrome- Facts and Statistics

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
Prevalence
  • 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

 

Reference

National Down Syndrome Society

World Health Organization

 

October is Down Syndrome Awareness Month

Down Syndrome Timeline

PDF version of article

According to the CDC, Down Syndrome is the most common chromosomal disorder. Each year 6,000 babies are born with Down syndrome which is estimated to be about 1 in every 700 babies. Here is a timeline showing Down syndrome progression over the years:

Down Syndrome Timeline

1866- British Physician John Langdon Down, first described the genetic disorder as “Mongoloid” based on patients similar characteristics.

1876- An initial association between premature “senility” and Down syndrome is discovered.

1929- Life expectancy is approximately 9 years of age

1932- Abnormal distribution of chromosomes was first suggested as the cause of Down syndrome.

1946- Life expectancy is approximately 12 years of age.

1948- Evidence between Alzheimer’s and Down syndrome is first published.

1959- Dr. Jerome Lejeune discovered Down syndrome is the result of an abnormality in the chromosomes.

1959- The term Trisomy 21 is used on the medical community to describe Down syndrome.

1960- Researchers discover a type of trisomy called translocation

1961- Researchers discover a type pf trisomy called Mosaicism. 

1965- The World Health Organization (WHO) accepts the name Down syndrome as the standard name to use.

1970- Life expectancy is approximately 25 years of age.

1976- Amniocentesis comes into common use in the United States

1987- A gene associated with Alzheimer disease is discovered on Chromosome 21

1994- CDC announces he prevalence of Down syndrome from 1893-1990 was 1 in 1087.

1997- Life expectancy is approximately 49 years of age.

2006- Life expectancy is approximately 60 years of age

Reference

Centers for Disease Control and Prevention

Global Down Syndrome Foundation

27 Facts On Stimming You Should Know

Click here to download PDF version of article

  1. “Stimming” is short for self-stimulatory behavior. (or stereotypical).
  2. It is common among people with developmental disabilities such as intellectual disabilities and Fragile X Syndrome.
  3. It is also prevalent among people on the autism spectrum.
  4. In fact in many cases, it is part of the diagnosis due to the repetition of stimming.
  5. Stimming is often used as a means to self-regulate, self-calm and for self-expression.
  6. The movements are repetitive and are used to self-stimulate the 7 senses.
  7. It is often described as a repetitive motor behavior that can disrupt academic and social and other activities.
  8. 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.
  9. Stimming behavior. based for self-soothing and to help a child or an adult regain emotional balance.
  10. Sensory Overload. Too much sensory information can lead to stress, anxiety and eventually a meltdown.
  11. It is observed in 10% of non-autistic children.
  12. common forms of stimming include spinning, hand-flapping and body rocking
  13. Benefits of stimming include the increased ability to remain calm, reduce meltdowns, and increased focus and time management skills.
  14. Love ones and society may consider stimming socially inappropriate
  15. Autistic people should be allowed to stim as much as needed
  16. Autistic people may bebefit from stress balls, fidget toys, and chewy jewelry.
  17. Stimming helps to relieve anxiety.
  18. Most people in the autistic community oppose attempts to reduce or eliminate stimming
  19. This is due to understanding that stimming is an important tool for self-regulation.
  20. Stimming can help block out excess sensory input
  21. Stimming helps provide extra sensory when needed
  22. repeated banging of the head actually reduces the overall sensation of pain.
  23. Visual. Repetitive movements such as fluorescent lights which tend to flicker.
  24. Smell (Olfactory) Includes repetitive behavior in licking, tasting objects,
  25. Tactile. Skin-rubbing, hand movement, and repeatedly grind teeth
  26. Vestibular. Moving body, rocking back to front, spinning, jumping and pacing.
  27. Vigorous exercise reduces the need to stim.

Picture

 

Reference

Autism Asperger’s Digest

Child Mind Institute

Diagnostic and Statistical Manual of Mental Disorders, (2013). APA 5th Edition

Science Daily

Autism Timeline: A History of Autism

Click here to download the article

In the 110 years since Swiss psychiatrist Eugen Bleuer coined the term autism, much has changed over the years. The journey of understanding autism continues to grow and while the autism has changed over the years, there are still many more things to discover. Hopefully we are moving from awareness to getting to a place of simply accepting people who bring special gifts to the world.

1908- Swiss psychiatrist, Eugene Bleuer is the first to use the autism to describe individuals with schizophrenia who lost contact with reality.

1912- Dr. Bleuler publishes “Das Autistische Denken” in a journal of psychiatry and presents his thoughts on how a person with autism experiences the world.

1938- Dr. Hans Asperger presents a lecturer on child psychology. He adapts Bleuler’s term “autism” and uses the term “autistic psychopathy” to describe children showing social withdrawal and overly intense preoccupations.

1938- Beamon Triplett writes a thirty-three page account of his 4 year- old Donald’s unusual behavior and sends it to Leo Kanner.

1943- Dr. Leo Kanner describes a childhood disorder involving social and language impairments and the presence of restricted or repetitive behaviors. The account of 11 children leading to a distinct syndrome.

1944- Dr. Hans Asperger reports on 4 children with a pattern of behavior he terms autistic psychopathy- behaviors include reduce empathy, difficulties with forming friendships, impairments in the ability to maintain reciprocal conversations.

1952- The first edition of DSM (Diagnostic and Statistical Manual) is published.

1959- LSD is used as treatment for autistic schizophrenic children.

1962- The National Autistic Society was created- The first autism organization.

1965- National Society for Autistic Children was founded.

1966- South African psychologist, Victor Lotter publishes the first prevalence study on autism in England.

1966- 4.5 in 10,000 are diagnosed with autism in the United States.

1966- Childhood autism rating scale introduced.

1967- Bruno Bettlheim publishes infantile autism and the Birth of Self becomes bestseller; blames mothers for autism.

1969- Dr. Kanner exonerates parents of responsibility for their children.

1970- Lorna Wing uses the term autistic spectrum to describe a concept of complexity rather than a straight line from severe to mild.

1972- Dr. Eric Schopler founds Division TEACCH  at the University of North Carolina.

1977- National Society for Autistic Children added sensory processing as one of the definitions.

1979- Autism spectrum first used by Lorna Wing and Judith Gould

1980- The prevalence is estimated 4 in 10,000

1980- Autism added to DSM-III

1980- Autism is listed as a mental disorder for the first time in the DSM.

1986- Temple Gradin publishes Emergence: Labeled Autism

1988- The movie Rainman popularized and awareness of the disorder increases among the general public.

1991- Sally Ozonoff suggested executive functioning impairs individuals with autism.

1994- The American Psychiatric Association adds Asperger’s disorder to DSM.

1996- Australian sociologist, Judy Singer coins the term Neurodiversity

1998- Andrew Wakefield reports an association between autism and MMR and bowel disease.

2000- 1 in 50 children according to the CDC are diagnosed with autism

2006- Autistic Self-Advocacy Network founded. A non profit organization run by and for autistic people.

2009- 1 in 110, children according to the CDC are diagnosed with autism

2012- 1 in 88 children are diagnosed with autism.

2013- Asperger’s disorder is dropped from the DSM-5

2014-1 in 68 children in the U.S. have autism.

 

25 Facts About Cerebral Palsy That You Did Not Know

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How much do you really know about cerebral palsy? Here are 25 interesting facts about cerebral palsy:

Is a group of neurological disorders that affects body movement and muscle coordination.

Is caused by damage to the brain which controls movement and balance

Affects the motor area of the brain that directs muscle movement.

The symptoms of cerebral palsy differ in type and severity in each person.

Is the leading cause of childhood disabilities.

Cerebral Palsy is not progressive meaning it does not get worse overtime.

Cerebral Palsy prevalence is 3.3 children per 1000.

There is no cure for cerebral palsy

Cerebral Palsy is not contagious

Risk factors for cerebral palsy include pre-mature birth, infections during pregnancy, exposure to toxic substances and mothers with excess protein in the urine or a history of having seizures.

Cerebral Palsy can also be caused by complicated labor and delivery due to disruption of blood and oxygen to the brain(hypoxia) and babies in a breech position (feet first).Spastic cerebral palsy is the most common type affecting 80% of people with cerebral palsy.

Ataxic cerebral palsy affects balance and depth perception

There are more boys born with cerebral palsy than girls.

Stroke in a baby or child less than the age of 3 results in cerebral palsy.

One in nine with cerebral palsy have features of autism

One in three children with cerebral palsy cannot walk

One in four children with cerebral palsy cannot feed themselves

There are 17 million people with cerebral palsy worldwide.

58.2% of children with cerebral palsy can walk independently, 11.3 walk using a hand-held mobility device and 30.6% have limited or no walking ability

Speech and language disorders are common in people with cerebral palsy

Pain is common among children with cerebral palsy

Harry Jennings, an engineer built the first modern folding wheelchair

Sir William Osler wrote the first book on cerebral palsy

Dr. Sigmund Freud was the first to state that cerebral palsy might be caused by abnormal development before birth.

Cerebral palsy doesn’t necessary mean learning difficulties.

References

www.cdc.gov/ncbddd/cp

http://www.cerebralpalsy.org/

https://www.ninds.nih.gov/Disorders/

Strategies In Training Autistic Employees

Researchers estimate around 50,000 young people with autism turns 18 every year. Is your organization ready to train these new employees?

Click here to download copy of article

What is Autistic Spectrum Disorder?

Autism Spectrum Disorder is a neurological disorder that includes a wide range (spectrum) of skills, symptoms and levels of support. Although no two people are alike, characteristics may include ongoing challenges with social skills that include difficulty and interacting with others. For those on the higher end of the spectrum, characteristics may include:

  • ·         A normal to high intelligence and good verbal skills
  • ·         Trouble understanding what someone else is thinking or feeling
  • ·         Difficulty understanding non-verbal cues
  • ·         May suffer from anxiety or depression
  • ·         Strong long-term memory
  • ·         May have executive functioning difficulties 
  • ·         Being highly creative
  • ·         A high sense of justice and fairness

It is important to note that autistic employees vary in the workplace. Younger employees may have received a diagnose very early their childhood while those in their 30’s to 50’s were more than likely diagnosed as adults. Many in fact may not realize they are autistic due to lack of information during their formative years. This rings true especially for women who did not fit the typical stereotype of autism.

Challenges Training Autistic Employees

The use of idioms, sarcasm, irony, metaphors and figure of speech may be difficult since most are literal thinkers.

Due to sensory sensitivities, harsh lighting and certain smells may be intolerable.

May feel anxiety working with groups during an activity, which includes role-playing and case studies.

Discomfort with noise

Coping with the unpredictable

Strategies In Training Autistic Employees
  • ·         Structured breaks- give notice in advance
  • ·         Give visual instructions. Verbal instructions are difficult to remember
  • ·         Do not assume that the employee is not listening or paying attention
  • ·         When explaining, use explicit and concrete language
Accommodations

A diagnosis of autism also qualifies under the American Disability Act (ADA).  While some may not want to disclose their diagnosis, It’s always a good idea to make sure each person is comfortable in the training. The following are some suggestions:

  • ·         Provide advance notice of topics to be discussed if possible
  • ·         Allow employees to use items to hold such as hand-help squeeze balls 
  • ·         Allow use of a noise-cancellation headset
Tips to Remember

Some autistic employees have a history of being bullied, which for many have carried over into the workplace.  Set rules in the beginning of the training that all participants should be respected.

 

 

 

 

 

 

2018 Disability Awareness Month and Observances

Annual awareness observances are sponsored by federal, health and non-profit organizations. Awareness campaigns serve the purpose of informing and educating people on a certain causes. Each year, the number of special needs organizations bringing awareness to specific disabilities and disorders seem to grow. Awareness activities range from one day to a month.
Here is a calendar of major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets. Since it is still early in the year, some of the campaigns still have 2017 campaigns on their websites. I will add new information once the changes are up on the websites.

January

National Birth  Defects Month

January 4- World Braille Day

January 24- Moebius Syndrome Awareness Day

February

February 15- International Angelman Day

February 28- Rare Disease Day

March

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 20- Brain Injury Awareness Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

April

April 2- World Autism Awareness Day 

May

Better Hearing and Speech Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

May 1- Global Developmental Delay Day

May 15- Tuberous Sclerosis Global Awareness Day

May 5-12- Cri du Chat Awareness Week

May 8-14- Brain Injury Awareness Week

June

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

Tourette Syndrome Awareness Month

July

July 15- Disability Pride Parade (NY)

July 15- Disability Awareness Day (UK)

July 22- National Fragile X Awareness Day

September

Craniofacial Acceptance Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

October

ADHD Awareness Month

Down Syndrome Awareness Month

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October 6- World Cerebral Palsy Day

October 14-20 Invisible Disabilities Week

OCD Awareness Week

National Physical Therapy Month

Rett Syndrome Awareness Month

Special Needs Law 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

 

 

 

Helping Children Understand Person First Language


Pubished by: ASD
Written By: Nicole Dezarn

Person first language is an important ethical matter often discussed in the field of special education and disability advocacy. The idea that the important descriptor for a person is not their disability but that the disability is something that the person has is fundamental in framing the mindset that having a disability doesn’t mean that a person is less or incapable of success. It can be challenging enough to broach this subject with adults but how do we help children to understand what person first language means and why it is so important? I felt it might be helpful to share an approach with which I have had success. Click here to read the rest of the story

Strategies In Training Employees with ADHD

Have you ever conducted a training with employees where you experienced a participant interrupting you while you were talking, blurting out answers before you complete your sentence or appearing not to pay attention? Chances are you may have an employee diagnosed with ADHD.

Click here to download a printed version

Most people think of children when they hear the word ADHD, but the fact is that ADHD can continue into adulthood and as a life-long challenge. Currently, 4.4% of the U.s adult population is diagnosed with ADHD. Of these adults, 38% are women and 62% are men.

What is ADHD?

Attention deficit/hyperactivity disorder (ADHD) is one of the most common neurodevelopmental disorders which is often characterized by a pattern of inattention/or hyperactivity/impulsivity that can impact workplace learning through making careless mistakes,the inability to complete a task, staying organized and excessive talking throughout the training.

Typically, a person with ADHD, the difficulties lies in the part of the brain that allows people to perform higher level task known as the executive function. 90% of people with ADHD also have an executive function disorder. This is the part of the brain that engages in goal-direction and self-regulations.

Two Types of ADHD:

Types of ADHD

Type 1: Inattention Without Hyperactivity

  • Trouble paying attention
  • Trouble following direction
  • Trouble following through with task
  • Easily distracted
  • Seems disorganized or careless
  • Slow to process information

Type 2: Hyperactivity Without Inattention

  • Trouble paying attention
  • Restlessness
  • Impulsive speech and action
  • Excessive talking
  • Difficulty waiting turns
  • May have a quick temper
  • Overactive
Challenges Training Employees with ADHD

Workplace learning in most cases for the participant means learning new information, participating in training activities, sitting for a period of time and given direction.

  • A participant with ADHD may have difficulty in sustaining attention and remaining focused during lectures.
  • May need questions repeated
  • May have difficulty in grasping main ideas or details during the lecture.
  • Become easily distracted by both internal (day dreaming) or external (noises) stimuli.
  • May blurt out an answer before a question has been completed.
  • May have difficulty in listening in environments with noise distractions.
  • Difficulty in following through with instructions
  • May talk excessively
  • Difficulty in taking turn in a conversation.

The upside is that often when a person with ADHD is interested in a topic, they may hyperfocus, meaning they will fully participant in group discussion, and show great enthusiasm for the subject matter.

Strategies that help in training employees with ADHD include:

Telling participants what they will learn

Vary instructions- auditory alone will not be effective, participants with ADHD will need visual aids as well.

Allow for frequent breaks.

Summarize key points of the training as a way to reinforce the lesson

Create a leadership role such as assisting in setting up any training equipment and giving out training material.

When possible, alternate between physical and mental activities.

Stick to the expectation of the time. It will be difficult for the participant to sustain focus once a time of dismissal is given.

Conduct a stretching activity for the group when possible, I would sometimes include a game of “would you rather.” This works great but should tie into the theme of the training.

Tips to remember:

A diagnosis of ADHD also qualifies under the American Disabilities Act regarding workplace accommodations.

 

 

 

National Association of Councils on Developmental Disabilities

Click to download a printed version

Through the Developmental Disabilities Assistance and Bill of Rights Act of 2000, created the State Councils on Developmental Disabilities which serves to coordinate and provide services for individuals with developmental disabilities. In the United States, there are 56 councils focusing on advocacy, systems change, and capacity building.

Alabama
Executive Director: Elmyra Jones-Banks
Phone: 334-242-3973
www.acdd.org

Alaska
Executive Director: Patrick Reinhart
Phone: 907-269-8990
www.dhss.alaska.gov

American Samoa
Executive Director: Norma Smith
Phone: 684-633-2696

Arizona
Executive Director: Erica McFadden
Phone: 602-542-8977
www.azdes.gov/addpc

Arkansas
Executive Director: Eric Munson
Phone/TDD: 501-682-2897
www.ddcouncil.org 

California
Executive Director: Aaron Carruthers
Phone: 916-322-8481
www.scdd.ca.gov

Colorado
Executive Director: Marcia Tewell
Phone/TDD: 720-941-0176
www.coddc.org

Commonwealth of the
Northern Mariana Islands
Executive Director: Pamela Sablan
Phone: 670-664-7000/1
www.cnmicdd.org

Connecticut
Executive Director: Melissa Marshall
Phone: 860-418-6160
www.ct.gov/ctcdd

Delaware
Executive Director: Pat Maichle
Phone: 302-739-3333
www.ddc.delaware.gov

District of Columbia
Executive Director: Mat McCollough
Phone: 202-724-8612
http://ddc.dc.gov

Florida
Executive Director:Valerie Breen
Phone: 850-488-4180
www.fddc.org

Georgia
Executive Director: Eric Jacobson
Phone: 888-275-4233
www.gcdd.org

Guam
Executive Director: Roseanna Ada
Phone: 671-735-9127
www.gddc.guam.gov

Hawaii
Executive Director: Waynette Cabral
Phone: 808-586-8100
www.hiddc.org

Idaho
Executive Director: Christine Pisani
Phone: 208-334-2178 or
1-800-544-2433
www.icdd.idaho.gov

Illinois
Executive Director: Kim Mercer
Phone: 312-814-2080
www.state.il.us/agency/icdd

Indiana
Executive Director: Christine Dahlberg
Phone: 317-232-7770
www.in.gov/gpcpd

Iowa
Executive Director: Becky Harker
Phone: 800-452-1936
http://iddcouncil.idaction.org

Kansas
Executive Director: Steve Gieber
Phone: 785-296-2608
www.kcdd.org

Kentucky
Executive Director: MaryLee Underwood
Phone: 502-564-7841
www.kyccdd.com

Louisiana
Executive Director: Sandee Winchell
Phone: 225-342-6804
www.laddc.org

Maine
Executive Director: Nancy Cronin
Phone: 207-287-4213
www.maineddc.org

Maryland
Executive Director: Brian Cox
Phone: 410-767-3670
www.md-council.org

Massachusetts
Executive Director: Dan Shannon
Phone: 617-770-7676
www.mass.gov/mddc

Michigan
Executive Director: Vendella Collins
Phone: 517-335-3158
www.michigan.gov/mdch

Minnesota
Executive Director: Colleen Wieck
Phone: 651-296-4018
www.mncdd.org

Mississippi
Executive Director: Charles Hughes
Phone: 601-359-6238
www.mscdd.org

Missouri
Executive Director: Vicky Davidson
Phone: 573-751-8611
www.moddcouncil.org

Montana
Executive Director: Deborah Swingley
Phone: 406-443-4332
Fax: 406-443-4192
www.mtcdd.org

Nebraska
Executive Director: Kristen Larson
Phone: 402-471-2330
www.dhhs.ne.gov/ddplanning

Nevada
Executive Director: Sherry Manning
Phone: 775-684-8619
www.nevadaddcouncil.org

New Hampshire
Executive Director: Isadora Rodriguez-Legendre
Phone: 603-271-3236
www.nhddc.org

New Jersey
Executive Director: Kevin Casey
Phone: 609-292-3745
www.njcdd.org

New Mexico
Executive Director: John Block III
Phone: 505-841-4519
www.nmddpc.com

New York
Executive Director: Sheila Carey
Phone: 518-486-7505
www.ddpc.ny.gov

North Carolina
Executive Director: Chris Egan
Phone/TDD: 919-850-2901
www.nccdd.org

North Dakota
Executive Director: Julie Horntvedt
Phone: 701-328-4847
www.ndscdd.org

Ohio
Executive Director: Carolyn Knight
Phone: 614-466-5205
www.ddc.ohio.gov

Oklahoma
Executive Director: Ann Trudgeon
Phone:  405-521-4984
www.okddc.ok.gov

Oregon
Executive Director: Jaime Daignault
Phone: 503-945-9941
www.ocdd.org

Pennsylvania
Executive Director: Graham Mulholland
Phone: 717-787-6057
www.paddc.org

Puerto Rico
Executive Director: Myrainne Roa
Phone: 787-722-0590
www.cedd.pr.gov/cedd

Rhode Island
Executive Director: Kevin Nerney
Phone: 401-737-1238
www.riddc.org

South Carolina
Executive Director: Valarie Bishop
Phone: 803-734-0465
www.scddc.state.sc.us

South Dakota
Executive Director: Arlene Poncelet
Phone: 605-773-6369
www.dhs.sd.gov/ddc

Tennessee
Executive Director: Wanda Willis
Phone: 615-532-6615
www.tn.gov/cdd

Texas
Executive Director: Beth Stalvey
Phone: 512-437-5432
www.tcdd.texas.gov

Utah
Executive Director: Claire Mantonya
Phone/TDD: 801-533-3965
www.utahddcouncil.org

Vermont
Executive Director: Kirsten Murphy
Phone: 802-828-1310
www.ddc.vermont.gov

Virgin Islands
Executive Director: Yvonne Peterson
Phone: 340-773-2323 Ext. 2137
www.dhs.gov.vi/disabilities

Virginia
Executive Director: Heidi Lawyer
Phone: 804-786-0016
www.vaboard.org

Washington
Executive Director: Ed Holen
Phone: 360-586-3560
www.ddc.wa.gov

West Virginia
Executive Director: Steve Wiseman
Phone: 304-558-0416
www.ddc.wv.gov

Wisconsin
Executive Director: Beth Swedeen
Phone: 608-266-7826
www.wi-bpdd.org

Wyoming
Executive Director: Shannon Buller
Phone: 307-777-7230
www.wgcdd.wyo.gov

 

2017 Disability Awareness Month and Observances

Our 2018 disability awareness month article blog is here

Awareness campaigns serve the purpose of informing and educating people on a certain causes. Each year, the number of special needs organizations bringing awareness to specific disabilities and disorders seems to grow. Awareness activities range from one day to a month.

Here is a calendar of major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets.

awareness-header

January

January 4- World Braille Day

National Birth Defects National Month

February

February 15- International Angelman Day

Duchenne Muscular Dystrophy Awareness Week February 13-19

March

Down Syndrome Awareness Week March 18- 24 (United Kingdom)

Brain Injury Awareness Month

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Multiple Sclerosis Month

National Tuberculosis Awareness Month

Social Work Month

Trisomy Awareness Month

April

Auditory Processing Awareness Month

Autism Awareness Month

Occupational Therapy Month

May

May 5- Cri Du Chat International Day

International Cri Du Chat Awareness Week May 1-7

Asthma and Allergy Awareness Month

Apraxia Awareness Month

Better Speech and Hearing Month

Cystic Fibrosis Awareness Month

Mental Health Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

June

Helen Keller Deaf-Blind Awareness Week June 24-30

Dravet Syndrome Awareness Month

Tourette Syndrome Awareness Month

July

National Fragile X Awareness Month

August

Aicardi Syndrome Awareness Month

September

Craniofacial Acceptance Month

Hydrocephalus Awareness Month

National Spinal Cord Injury Month Awareness

Sickle Cell Anemia Awareness Month

October

October 6- World Cerebral Palsy Day

OCD Awareness Week- October 8-14

ADHD Awareness Month

Down Syndrome Awareness Month

National Disability Awareness Month

National Dyslexia Awareness Month

National Physical Therapy Month

Rett Syndrome Awareness Month

Sensory Processing Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

November 4- National Stress Awareness Month

22q Awareness Month

Epilepsy Awareness Month

December

December 3- International Day of Persons With Disabilities

 

 

 

 

 

 

Happy Holidays

Happy Holidays From:

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Special Needs Resource Blog will take a break during the holidays and will return Monday, January 2, 2017 with new information, tools and resources to post including more downloadable free tools and templates Monday thru Friday. I am excited and look forward to sharing more resources with you in the new year.
Thanks to all of you for following my blog this year. Wishing you and your families joy and peace all through the holidays and throughout the new year. May the spirit of the holidays be with you throughout the new year.  🙂  🙂

Transition Planning Timeline

Click here for a printed version

One of the goals of the Individuals with Disabilities Education Act is to include transition planning services for all special education students at age 16. Transition planning is mandated through IDEA 2004 which serves to help students begin the process of preparing for post-school activities including, postsecondary education, vocational education, integrated employment and adult services. A timeline will help you stay focused on achieving each step.

The law states transition planning should begin no later than 16 years old or before. It is recommended transition planning should begin by age 14 since services are different in the adult services world including long waiting list depending on where you live and what services are available.

14 Years Old
  • Transition planning should begin no later than when your child is 14.4- It is the law in most states.
  • Begin to research agencies who provide services for individuals with disabilities
  • IEP meeting should focus on the student’s needs, interest in preparation for adulthood
  • Research various aspects of transition services
  • Begin to explore recreation activities
15 Years Old
  • Develop a vision statement
  • Transition goals should be part of the IEP
  • Begin to discuss home services
  • Attend information fairs that offer information on future planning including residential, guardianship and employment
  • Start planning an independence plan at home where possible
16 Years Old
  • Transition goals at the IEP meetings should be updated.
  • Confirm how long students will attend high school- 4 years or until age 21
  • Start the process of getting referrals to your state agency
  • Begin researching adult services and programs. Some waitlist can last for years
  • Initiate application to adult service agencies
17 Years Old
  • Confirm a graduation date
  • Update transition goals in the IEP
  • Begin to invite adult service providers to IEP
  • Begin to investigate guardianship information and the process
18 Years Old
  • Adult eligibility should be completed
  • Apply for SSI (Supplemental Security Income) and Medicaid.
  • Visit adult providers programs
  • Attend job fairs if appropriate
  • Establish legal guardianship if necessary
  • Explore future planning
18-21 Years Old
  • Refine vision statement
  • Revise and update IEP goals
  • Invite transition coordinator your child’s IEP meeting
  • Explore and obtain necessary funding for adult programs
  • Ensure there is a plan for medical/health coverage
  • Confirm all support services are in place.

Below is a free transition printable planning checklist. Feel free to download the PDF.

transition-planning

transition-planning-checklist

20 Facts You Should Know About Down Syndrome

In keeping with celebrating Down Syndrome Awareness month, here are some additional facts on Down syndrome:

down-syndrome-facts

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This alters the course of development and causes characteristics associated with Down syndrome.
  • There are 3 types of Down syndrome

downsyndrometypes

  • It is the most commonly occurring chromosome condition
  • 1 in 691 babies are born in the United States
  • The incidences increases with the age of the mother due to high fertility rates in younger women.
  • An increased for certain medical conditions such as, congenital heart defects, respiratory, Alzheimer disease and childhood Leukemia.
  • Common traits include low muscle tone, small stature, upward slant in the eyes and a single deep crease across the center of the palm.
  • Translocation is the only type that is inherited
  • Is named after British Doctor John Langdon Downs the first to categorize the common features
  • Dr. Jerome Lejeune discovered Down syndrome is a genetic disorder
  • A person has 3 copies of chromosome 21 instead of 2
  • Is the leading cause of intellectual and developmental disabilities in the United States and the World.
  • 38% of Americans know someone with Down syndrome
  • The average lifespan is 60. In 1983, it was 25.
  • 39.4 % are in the mild intellectual disability range of 50-70.
  • 1% are on the border
  • A growing number live independently
  • Occurs in all races and economic levels.
  • Some high school graduates with Down syndrome participate in post-secondary education.
  • In the United States, Down syndrome is the least funded major genetic condition

 

40 Facts You Should Know About ADHD

October is ADHD Awareness Month. An opportunity to have a greater understanding and awareness of ADHD. How much do you really know about ADHD? some of the fact below may surprise you.

adhdfacts

  • ADHD is a condition characterized by inattentiveness, hyperactivity and impulsivity
  • It is one of the most common neurodevelopmental disorders of childhood
  • It is usually diagnosed in childhood and last into adulthood
  • People diagnosed with ADHD may have difficulty paying attention and or controlling impulsive behavior

    adhdtable

  • People with ADHD may day-dream often
  • 70% of people with ADHD in childhood will continue to have it in adolescence
  • 50% will continue into adulthood
  • ADHD is not caused by watching too much, parenting or having too much sugar
  • ADHD may be caused by genetics, brain injury or low birth weights
  • Is a highly genetic, brain-based syndrome that has to do with the brain regulation in executive functioning skills
  • Affects people of every age, gender, IQ, religious and socio-economic background
  • In 2011, CDC reported 9.5% of children are diagnosed with ADHD
  • Boys are diagnosed 2-3 times as often as girls
  • Up to 30% of children and 25-40% of adults with ADHD have co-existing anxiety disorders.
  • Can be difficult to diagnosed
  • Children with untreated ADHD are often mislabeled as problem children
  • The average age of diagnosis is 7
  • Symptoms typically first appear between the age of 3 and 6
  • About 4% of American adults over the age of 18 deal with ADHD on a daily basis
  • 12.9 percent of men will be diagnosed
  • 4.9 percent of women will be diagnosed
  • Children living below twice the poverty level have increased risk
  • The lowest states with ADHD rates are Nevada, New Jersey, Colorado, Utah and California
  • The highest states with ADHD rates are Kentucky, Arkansas, Louisiana, Indiana, Delaware and South Carolina
  • An estimated 6.4. million American children have been diagnosed
  • ADHD is often overlooked in girls
  • The average cost of treating ADHD per person is $14,576
  • The yearly cost to Americans is 42.5 billion
  • U.K. children are less likely to be diagnosed with ADHD than U.S. children
  • Boys and girls display very different symptoms

adhddiff2

  • It was first mentioned in 1902. British Pediatrician Sir George Still described “an abnormal defect of moral control in children.”
  • He found that some affected children could not control their behavior the way typical children would.
  • Was originally called hyperkinetic impulse disorder
  • In 1798, Sir Alexander Crichton used to term, “mental restlessness.” to describe ADHD
  • During the 1940’s, the disorder was blamed on brain damage
  • In 1955, the FDA approved the drug Ritalin
  • In 1980, the American Psychological Association changed the name to ADD
  • In 1989, the name was changed again to ADHD
  • Sleep disorders affect people with ADHD
  • ADHD contributes to more driving citations and accidents

Cerebral Palsy History Timeline

According to the Centers for Disease Control and Prevention (CDC), cerebral palsy is the most common motor disability in childhood. About I in 323 children are diagnosed each year. Although more than likely, cerebral palsy has been around for years, it was not until the 19th century that cerebral palsy was given a name. Here are some key events in cerebral palsy history.

cptimeline

1810- Dr. William John Little is credited with first identifying spastic diplegia is born.

1836- Louis Stromeyer corrects John Little’s club foot. This discovery begins a career in understanding and treating childhood impairments.

1843- Dr. William John Little begins lecturing on spastic ridgity.

1853. Dr. William John Little publishes On the Nature and Treatment of the Deformities of the Human Frame.

1861- Dr. William John Little establishes the classic definition of spastic cerebral palsy.

1889- William Osler, one of the founding professors of John Hopkins Hospital, wrote the book, Cerebral Palsies of Children

1937- Herbert A. Everest and Harry Jennings Sr., built a lightweight collapsible wheelchair.

1937- The Children’s Rehabilitation Insitute is founded by Dr. Winthrope Phelps specializing in children with cerebral palsy.

1897- Dr. Freud states cerebral palsy may be caused by fetal development

1946- Cerebral Palsy of New York State founded by parents of children with cerebral palsy.

1948- United Cerebral Palsy is incorporated.

1949- United Cerebral Palsy founded by Leonard Goldenson, his wife Isabel, Nina Eaton and Jack and Ethel Hausman.

2002-  Centers for Disease Control and Prevention (CDC) conducts first U.S. multi-state study on the prevalence.