Tourette Syndrome Awareness Month

Posted on May 17, 2022 by specialneedsresourcetrainingblog

Date: May 15- June 15, 2022

June is Tourette Syndrome Awareness Month.

What is Tourette Syndrome?

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

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

There are three types:

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

Signs and Symptoms:

Tic Disorders:

eye blinking
coughing
throat clearing
sniffing
facial movement
shoulder shrugging

Vocal Tics:

barking or yelping
grunting
repeating what someone else says
shouting
sniffing
swearing

Co-Occurring Disorders Include:

Attention Deficit/Hyperactivity Disorder (ADHD)
Obsessive -Compulsive Disorder
Learning difficulties
Behavior problems
Anxiety
Mood problems
Sleeping issues
Social skills and deficits

Resources:

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

Williams Syndrome Awareness Month

Posted on May 10, 2022 by specialneedsresourcetrainingblog

Date: May 1- May 30, 2022

May is Williams Syndrome Awareness Month.

What is Williams Syndrome?

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

Facts and Statistics

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

Physical characteristics include:

Musculoskeletal

Almond shape eyes

Broad forehead

long neck

Longer upper lip

Puffiness around the eyes

sloping shoulders

Small chin

Small upturned nose

Wide mouth

Learning Characteristics

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

Download awareness event planning tools

purchase an awareness t-shirt

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

Autism Acceptance Month

Posted on May 5, 2022 by specialneedsresourcetrainingblog

Date: April 1- April 30, 2022

What is a Autism Spectrum Disorder?

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

Prevalence

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

1 in 42 boys are diagnosed with autism

1 in 189 girls are diagnosed with autism

100 individuals are diagnosed everyday

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

ASD is 4 times more common among boys than girls.

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

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

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

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

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

Stimming

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

Wandering Statistics

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

Resources

Download Factsheet

Autism and Visual Impairment

Epilepsy and Autism

Self-Regulation and Autism

Trisomy Syndrome Facts and Statistics

Posted on March 15, 2022 by specialneedsresourcetrainingblog

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.

April 2 is World Autism Day

Posted on April 1, 2021 by specialneedsresourcetrainingblog

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.

Spinal Cord Injuries-Data and Statistics

Posted on October 3, 2019 by specialneedsresourcetrainingblog

Facts and Statistics

Each year, around the world, between 250,000 and 500,000 people suffer from a spinal cord injury.
The majority of spinal cord injuries are due to preventable causes such as road traffic crashes, falls or violence.
Spinal cord injury is associated with lower rates of school enrollment and economic participation.

Spinal Cord Injuries Are Most Commonly caused by:

Age of Injury

The average age of injury has increased from 20 years during the 1970’s to currently 42 years of age.

Gender

Males account for approximately 80% of new spinal cord injury cases.

Life Expectancies

Life expectancies for persons with SCI continue to increase, but are still somewhat below life expectancies.

References

Foundation for Spinal Cord Injury Prevention Care and Cure

National Spinal Cord Injury Statistical Center

Spinal Cord Injury News Blog

World Health Organization

Data and Statistics- Fetal Alcohol Spectrum Disorders (FASD)

Posted on September 4, 2019 by specialneedsresourcetrainingblog

Fetal alcohol disorders range from mild intellectual and behavioral problems to extreme disorders that lead to profound disabilities or premature death.
FAS are not heredity: they are 100 percent preventable the sole cause is prenatal alcohol exposure.
Of the children heavily exposed to alcohol before birth, about 40 percent are estimated to exhibit fetal alcohol disorders, with 4 percent affected by full blown fetal alcohol syndrome.
Women who give birth to a child with FAS are 800 times more likely to give birth to subsequent children with the syndrome than are women who have never given birth to a child with the syndrome.
Each year, there are four times as many infants born with fetal alcohol disorders as there are infants born with muscular dystrophy, spina bifida and Down syndrome combined.
15 out of 100 women of childbearing age do not know that drinking alcohol during pregnancy is dangerous.
FASD affects about 40,000 newborns each year
A survey of pediatrician reported in the journal Pediatrics revealed that only 13 percent routinely discussed the risk of drinking during pregnancy with their adolescent patients.

According to the Center for Substance Abuse Prevention, 1 in 9 pregnant women binge drink during the first trimester.
FASD are 100% incurable
60% of individuals with FASD find themselves in legal trouble at some point in their lives.
There is a high prevalence of epilepsy (5.9%) in individuals with FASD compared with individuals who did not have the disorder.
94% of individuals heavily exposed to alcohol in the womb are diagnosed with ADHD
It is estimated a lifetime cost for one individual with FASD is 2 million
50% of adults with FASD were clinically depressed

SEPTEMBER IS FETAL ALCOHOL SPECTRUM DISORDER AWARENESS MONTH

Developmental Disability Facts and Statistics

Posted on March 28, 2019 by specialneedsresourcetrainingblog

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

Posted on March 18, 2019 by specialneedsresourcetrainingblog

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

Posted on March 11, 2019 by specialneedsresourcetrainingblog

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:

Self-care– brushing teeth, hand-washing and combing hair independently
Receptive and expressive language-ability to understand someone talking and to also be understood
Learning– ability to read and write with understanding
Mobility-ability to move around without any assistance
Self-direction– time management, organization
Capacity for independent living– requiring no supervision
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