Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #1: Be “In the Know”

on October 1, 2015

Let’s be realistic here: the vast majority of people we meet in the street know little to nothing about Down syndrome.  I knew as much as my ninth grade Biology teacher had taught me (I was a good student, but still, not much stuck).  Extra chromosome, learning difficulties, yada yada.

I knew nothing.

While I know lots now, I still know nothing.

When I talk with other people, I have learned to assume they know nothing realistic about Down syndrome and take the approach that it is simply my job to teach them.  After all, two years ago, I knew nothing.  Why would they?  In addition to that, people who were born with Down syndrome even 10 years ago have a dramatically different life experience than those being born today.  It is important to educate ourselves if we, in turn, want to educate others.  Believe me, there is nothing that I love more than setting the record straight when it comes to information about Down syndrome.

Some facts for you… so that you can be “in the know” when someone starts talking about Down syndrome:

Down syndrome (Trisomy 21) occurs when a third copy of the 21st chromosome is present in an individual.

There are three types of Trisomy 21 – translocation and mosacism are much more rare.  Tessa has the standard type.  Usually, the extra chromosome is from the mother, but in about 8% of cases, it comes from Dad.

No, we don’t know which parent gave Tessa her special gift.

Trisomy 21 is a random and common abnormality.  It’s not a disease, it’s not contagious, it’s not preventable, it’s not predictable. It happens equally across all races, religions, and economic backgrounds.  Yes, the odds increase as a woman ages, but most babies with Down syndrome are born to younger moms simply because younger moms have more babies in general.

You will often hear about the IQ of people with Down syndrome being low to very low.  However, we know now that IQ tests do not accurately measure the intelligence of people with Down syndrome because of their difficulties with communication.  We know that with interventions and schooling and inclusion, people with Down syndrome most often live independent lives.  They can learn to drive cars, get married and some have children.  They can work, they can go to college.  They can do most anything – they just need some extra time and maybe some extra help.

Typical issues that people with Down syndrome might deal with include heart defects, intestinal issues and Celiac disease, hypothyroisim, obstructive sleep apnea, leukemia, and in the long term, Alzheimer’s disease.  Not everyone will have these issues.

It is important to know that while these occur more often in Down syndrome than in the typical population, response to treatment is much more successful if a person has Ds.

Most importantly, studies continue to show that people who have Down syndrome tend to express very high levels of satisfaction with their lives.  In one study, 99% of the over 3,000 individuals studied reported being happy with their lives and 97% like who they are.  Their families are generally content; families also experience lower divorce rates than those without children with Down syndrome.

Please stop for a moment and think about all of the people that you know.  Are 99% of them happy with their lives?

Food for thought.



One response to “Advocacy #1: Be “In the Know”

  1. Awesome info! That picture takes the cake, though. Ohmycuteness!!!

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