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

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February

February (Month)

Turner Syndrome Awareness Month

February (Week)

February 7-14 Congenital Heart Defect Awareness Week

February 8-12 Feeding Tube Awareness

February (Day)

February 15- International Angelman Day

February 28- Rare Disease Day

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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

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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

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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)

 

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July

July (Month)

National Cleft and Craniofacial Awareness and Prevention Month

National Fragile X Syndrome Awareness Month

July (Day)

July 18- Disability Awareness Day (UK)

July 22- National Fragile X Syndrome Awareness Day

July 26- American Disability Act Day

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September

September (Month)

Chiari Awareness Month

Craniofacial Acceptance Month

Cortical Visual Impairment (CVI) Awareness Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

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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

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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

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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

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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)

 

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July

July (Month)

National Cleft and Craniofacial Awareness and Prevention Month

National Fragile X Syndrome Awareness Month

July (Day)

July 18- Disability Awareness Day (UK)

July 22- National Fragile X Syndrome Awareness Day

July 26- American Disability Act Day

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September

September (Month)

Chiari Awareness Month

Craniofacial Acceptance Month

Cortical Visual Impairment (CVI) Awareness Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

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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

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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

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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.