Trisomy Syndrome Facts and Statistics

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

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

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

 

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

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 you should know about severe autism

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

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

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

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

5 nonverbal children that found their voices

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

Helping nonverbal kids to communicate

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

Nonverbal autism: Symptoms and treatment activities

Missing brain wave may explain language problems in nonverbal autism

Overview of nonverbal autism

What can we learn from studying severe autism?

What makes severe autism so challenging?

Why being nonverbal doesn’t mean being non-capable

Why children with severe autism are overlooked?

Updated 8/23/2020

Accommodations for Students with Dysgraphia

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

Early Signs of Dysgraphia

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

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

The following articles provide resources on accommodations:

6 tips for creating a dysgraphia-friendly classroom

A guide to classroom and at-home accommodations for dysgraphia

Classroom accommodations for students with dysgraphia

Dysgraphia Accommodations

Dysgraphia accommodations and modifications

Dysgraphia accommodations in the classroom

Dysgraphia accommodations that improve learning

Dysgraphia symptoms, accommodations, and IEP goals

How to assist a student with dysgraphia in the classroom

Possible accommodations to consider for children with dysgraphia

What To Do When Someone Has A Seizure

shutterstock_epilespy

Click here to download a printed version

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

Call 911 if:

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

Do Not:

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

After the seizure:

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

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

Don’t shake the person or shout.

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

Source: Centers for Disease Control and Prevention

Source: National Institute of Neurological Disorders and Stroke

What is Augmentative and Alternative Communication (AAC)?

According to the American Speech Language Hearing Association, there are over 2 million people with significant expressive language impairment who use AAC. AAC users including people with the following disorders; autism, cerebral palsy, dual sensory impairments, genetic syndromes, intellectual disability, multiple disabilities, hearing impairment, disease, stroke, and head injury.

According to the International Society for Augmentative and Alternative Communication Organization. AAC is a set of tools and strategies that an individual uses to solve everyday communicative challenges. Communication can take many forms such as: speech, a shared glance, text, gestures, facial expressions, touch, sign language, symbols, pictures, speech-generating devices, etc. Everyone uses multiple forms of communication, based upon the context and our communication partner. Effective communication occurs when the intent and meaning of one individual is understood by another person. The form is less important than the successful understanding of the message.

The types of AAC includes both low-tech and high tech. Low tech AAC includes symbol charts, PECS,  and communication boards, while high tech AAC include electronic devices such computers, tablets and devices.

The following information provides resources, articles and tips on using AAC:

3 sets of AAC goals for interactive books

5 quick and easy games that build AAC skills

50 simple switch or low tech activities

AAC and Echolalia

AAC for caregivers manual

AAC Quiz

Augmentative and alternative communication (AAC) systems for students with CVI and multiple disabilities 

How to make an AAC symbol library

Language opportunities to use AAC at home

Low-Tech AAC Ideas

Promoting inclusion and participation for people who use AAC

Reducing prompt dependence in AAC learners: 5 things to try

The periodic table of AAC

Using AAC more in the classroom

Using LIST in PODD communication books

What does it take to implement AAC

 

Teaching Strategies for Individuals with Multiple Disabilities

 

Evidence based practices for students with severe disabilities 

Instructional strategies for students with multiple disabilities

Multiple disabilities in your classroom: 10 tips for teachers

Severe and education of individuals with multiple disabilities

Strategies for inclusion of children with multiple disabilities including deaf-blindness

Students who are blind or visually impaired with multiple disabilities

Students with multiple disabilities

Supporting young children with multiple disabilities: What do we know and what do we still need to learn?

Teaching students with multiple disabilities

Teaching students with severe or multiple disabilities

What is Sepsis?

While Sepsis is a severe life-threatening medical condition, it can also affect people with disabilities. According to the Centers for Diseases and Control (CDC), Sepsis is the body’s extreme response to an infection. It is a life-threatening medical emergency. Sepsis happens when an infection you already have —in your skin, lungs, urinary tract, or somewhere else—triggers a chain reaction throughout your body. Without timely treatment, sepsis can rapidly lead to tissue damage, organ failure, and death. Sepsis kills more than 250,000 people a year with 1.5 million diagnosed each year.

Signs and Symptoms
  • An initial infection
  • Fever
  • High heart rate
  • heavy breathing

Severe sepsis occurs during organ failure. signs include:

  • decrease urination
  • breathing problems
  • body chills
  • extreme weakness

Sepsis is caused by:

  • Pneumonia
  • Kidney infection
  • Bloodstream infections.

if you work with an individual displaying any of these signs and symptoms, seek medical attention.

Resources

Recovering from Sepsis– NHS

Sepsis Overview– Science Direct

What is Sepsis?– Sepsis Alliance

Attention Skills Strategies

Attention is defined as the ability to keep the mind on something and the ability to concentrate. Skills often include careful observation or listening. The ability for a student to sustain attention, motivation, language, and sensory intervention. Children with autism, ADHD, intellectual disabilities, executive functioning disorders, and Cri du Chat have difficulty sustaining attention over a long period of time.

Strategies they may provide to be useful include:

  • Eye Contact
  • Repeat instructions
  • Provide frequent breaks
  • Use in a leadership role.
  • Provide choices in test-taking
  • Ongoing prompting.

The following are articles on ways to improve concentration and attention:

4 concentration activities for students – Getting Smart

7 in-class activities to improve concentration in children-TEACH

10 Games to boost attention and focus– Heart-Mind Online

Attention Activities– The OT Toolbox

Activities that help develop attention skills– Boise Speech and Hearing Clinic

Attention and Concentration– Kidsense

Brain training activities– Our Journey Westward

Pay attention: Ten steps to improving attention and concentration- ADHD Center

The attention games: Catching focus through fun– Additude

Using play to increase attention– Miss Jaime OT

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?