Down syndrome (Trisomy 21) is a chromosomal disorder due to 3 copies of chromosome 21, causing a number of developmental delays, medical and physical disabilities. Learning is one of the areas that is affected by the disorder. Children born with Down syndrome typically have delays in the area of gross and fine motor skills, thinking, short attention span, speech and language difficulties and sequencing. The following links and resources include information on tips and strategies for teaching children with Down syndrome for both parents and teachers.
October is Down Syndrome Awareness Month. Down syndrome is defined as a genetic disorder caused by an extra copy of chromosome 21. I have included articles that I have posted over the years to help educate others. Please feel free to share on other social media sites.
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
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
Today is World Down Syndrome Day. A campaign designed to create a single voice for advocating for the rights, inclusion and well-being of people with Down Syndrome. Resources on this page include information on inspiring articles and facts on people with Down Syndrome.
Established in 1994, Band of Angels provides support for individuals with Down Syndrome and their families. The website offers links on Down Syndrome support groups and a litany of topics including, adoption, autism and education.
A U.K. based international organization comprising a membership of individuals and organizations from all over the world. Disseminates information on Down Syndrome including prenatal diagnosis, early intervention, education, medical, health, employment, aging and human rights. Down Syndrome International also promoted World Down Syndrome Day (March 21) as a day dedicated to people with Down Syndrome.
Provides fundraising, education and governmental advocacy for the Linda Crnic Institute for Down Syndrome. Resources available on the website include, information on research, medical care and facts on Down Syndrome.
Dedicated to helping and advocating for individuals with Down syndrome from conception and throughout life. Offers support to parents who are new to the Down syndrome diagnosis by connecting parents to each other.
NADS is the oldest organization in the United States serving individuals with Down syndrome and their families. Also provides families with information and resources that will enable them to access appropriate services and educates the public about Down syndrome.
The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.
NDSS provides resources to new and expectant parents and offers a toll-free helpline and email services. NDSS also focuses on transitions , wellness and education
The following are articles highlighting stories around the country on Down syndrome:
Studies show that 5 to 39% of children with Down syndrome are also on the autism spectrum. There are overlaps in some of the symptoms which delays the signs and symptoms of autism. This observation is slowly growing and informing parents to look for specific signs and symptoms.
The importance of getting the diagnosis
Most often children with Down syndrome are treated for the characteristics of having Down syndrome which overlooks giving children the appropriate treatment for Autism such as social skills and sensory issues. A child or young adult with both diagnosis will likely experience aggressive behaviors, meltdowns, and show signs of regression during their early development. The following are signs and symptoms to look for in your child, or student:
Hand flapping
Picky eater
Echolalia
Fascination with lights
Staring at ceiling fans
History of regression
Head banging
Strange vocalization
Anxiety
Seizure Disorder
If you suspect your child is dual diagnosed, make an appointment for a medical work up which should include:
Task boxes (also known as work boxes) are structured work systems created by Division TEACCH t the University of North Carolina Chapel Hill. This system allows the student to work independently on a task for a specific time in a supportive environment. Task boxes are now used for students with a variety of disabilities including students required pervasive levels of support.
There are 3 types of task boxes: stacking- Helps with eye-hand coordination and fine motor skills; sorting- may break activities by size, color, texture, shape and flavor and fine motor- strengthens the smaller movement in the wrists, hands and fingers.
The following sites include information on how to set up a task box system in your classroom or in your home.
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.
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
