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Understanding Down Syndrome

I was first introduced to a child with Down Syndrome decades ago. She was the daughter of a neighbor as well as a friend of my daughter and our family. I wrote an earlier blog about the wonderful relationship that we had (Suzy’s Story). Indeed, that relationship had a lot to do with motivating me to co-found Creative.

Perhaps you’ve seen one of these quotes on the front of a t-shirt:

Keep calm its only Chromosome 21

My kid has more chromosomes than your kid

Looking good in my designer genes

These are references to the underlying genetic anomaly that occurs when there is an additional Chromosome 21 typically resulting in developmental differences. The latter may require support in the areas of education, advocacy, transition, health, housing, and employment.

The most common form of Down Syndrome is known as Trisomy 21, where an embryo has three copies of Chromosome 21. Two other types of Down Syndrome are Mosaic Down Syndrome and Translocation.

There is a greater chance of a child being born with Down Syndrome when the mother is over 40. Concerned families have the options of genetic counseling, prenatal screenings, diagnostic tests including blood tests, sonograms, chorionic villus (CVS), and amniocentesis prior to birth. At the time of birth, a medical doctor can complete an observation of physical traits and a chromosome analysis to diagnose Down Syndrome.

While every individual is unique, children with Down Syndrome may have challenges with behavior, cognitive delays, and speech or language difficulties — all of which impact their academic and social growth. Yet, it is most important to keep the perspective that differences, such as Down Syndrome and its associated challenges, might increase the difficulty of a person achieving their great potential, but they never preclude it. It is up to us, parents, practitioners, and educators, to be there to help.

During the school years, parents can reach out to their local school personnel to determine if their child requires specialized services to address cognitive, behavioral, or communication challenges through the Individualized Education Program (IEP) team. This process requires assessments, review of data, and an eligibility determination for the presence of an intellectual disability, communication impairment, or other area which impedes a child’s ability. Because each child is unique, there may be other areas of concern such as orthopedic development, functional and adaptive behaviors, or behavioral functioning that may require exploration and support, through an IEP.

These are typical areas that impact children with Down Syndrome — it is not exhaustive. Most importantly, people with Down Syndrome are people. They are stars of television shows, entrepreneurs, council members, musicians, artists, public speakers, and some are baristas at the local coffee shop.

The more we understand, the more we are educated, the more the light of understanding and knowledge drives out the shadows of uncertainty and doubt. We must think of Down Syndrome (and the other challenges so many of our children face today) not as “disabilities” but as “differences.” We must appreciate that every human being has great potential, and with that appreciation we gain the ability to help the child (or adult) improve, learn, grow, and lead a rich productive life.

2018-04-05T15:08:26+00:00

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