Down Syndrome Awareness is important to me because I have an 8-year-old son who has Down syndrome. On July 2, 2010, shortly after an emergency c-section, and before I got to hold my new baby, we got the news that the doctor thought he might have Down syndrome, also called Trisomy 21, which means that for reasons unknown, he has an extra copy (in part or whole) of the 21st chromosome.
Joey was born over Fourth of July weekend, which meant that the genetics clinic at Emory was closed and it would be at least 7 days before we would know for sure.
What we learned in those early days was the medical community is not prepared to equip & inform parents about Down syndrome!
Our nurse assured us as we visited our son in the NICU for the first time that a lot of people would want to adopt him.
Our doctors told us of all the possible complications that could come our way – such as heart defects, hearing problems, speech issues, thyroid issues, low muscle tone, celiac disease, a higher risk for leukemia, life-long dependence, low IQ, a likelihood of getting Alzheimer’s when older, and a shorter life expectancy – and that there was no way of telling if our son would experience any of that list and to what extent.
Our geneticist told us Joey may put one to two words together. The message they sent was one of fear, not optimism.
Then we actually met real people in the Down syndrome community. Through organizations like the National Down Syndrome Congress and the Down syndrome Association of Atlanta, we met with other parents, talked with experts and learned that people with Down syndrome really are more like their peers then they are different.
We learned that people with Down syndrome, however, are just as individual as you and I. While there is no spectrum and how Down syndrome represents itself in people is very individualized from the degree of low tone, to IQ to personality traits, etc. We were encouraged to treat Joey just like we would our other children. We were given examples of people living with Down syndrome who play sports, go to college, work, and even get married!
We were lucky, Joey did not have any of the major medical complications the doctors told us he could have and we set about getting him whatever support he needed. That included physical therapy, occupational therapy, speech therapy, and tutoring.
Some things we have learned in the last 8 years are:
- Be patient. He will catch on to most things, in his time. It took him longer to crawl and walk than his peers, but with therapy and practice, he eventually got it and now is all physical guy and loves to play soccer, baseball, and basketball. He is quite good at it too! Now we are focused on learning to read and going to the potty when he needs to go. He knows how to, but his low tone may make it difficult for him to know when he has to and his stubbornness may keep from stopping what he is doing to go.
- Be hyper intentional. We have to be very hands-on in learning and life skills. It is very important that I take the responsibility of being his primary teacher, and work with his teachers to ensure success. That means lots of reading and math at home, tutoring and going to places that give support like GiGi’s Playhouse Atlanta. It means everything is a learning opportunity!
- Expect the unexpected! Joey is a very curious little boy with plenty of mischief in him! For example, he loves milk, waffles,, and tortillas. He knows he cannot just help himself to these items when he feels like it, because he will get the entire package in one sitting. He also knows, how to get the package of tortillas or gallon on milk and sneak downstairs. The other day he proudly showed me his hiding spot for the milk jug.
- People will surprise you. We have come a long way! 30 years ago many people with DS were put in institutions and there were low expectations for them. I feared people would make fun of him and exclude him. I am so proud of the kids in our neighborhood who include Joey in play after school, and realize he can’t run as fast, but include him nonetheless, and for the young man this summer who showed Joey how to play Sharks and Minnows with the rest of the kids and stuck next to him the whole time. Joey is liked and accepted by his peers and I believe inclusion has a big role in that!
- All kids have special needs. Sometimes Joey is the easiest of our three. We have a ten-year-old and 17-year-old and they also need extra attention and support in areas that we could not have predicted when they were born. There is no such thing as normal!
- Overwhelming love! That kid is the definition of love. I am so proud of him. He makes me smile and laugh every day! And while people with Down syndrome are not happy all the time, they do have every emotion that you and I have, Joey has a sense of wonder and excitement that permeates everything he does.
So, while we do face challenges, such as making sure he learns the academic and life skills for a life of independence, advocating for inclusion, finding ways to provide lifelong financial supports, affording the therapies that will help him become independent, and being ever vigilant for his safety, we also experience great joy and love.
So why is Down syndrome awareness important?
Today, nearly 70% of parents in the US, and higher in other countries, who get a pre-diagnosis end up aborting likely due to misinformed doctors like mine.
We still need inclusive and equal education opportunities and more inclusive communities.
There are few options and little support available after they leave the education environment, and many people end up alone on the couch at home. There needs to be a funnel for employment, independent living, transportation, and community activities.
So, what can you do? First of all, remove the R-word from your vocabulary under all circumstances. And use people first language – say a boy with Down syndrome, not a Downs boy.
If you own a business or are involved with hiring, consider how you could employ someone and make sure your employees are trained for disability awareness.
If you know someone who gets a diagnosis or has a baby with Down syndrome, you can refer them to their local Down Syndrome Association to get the real facts and lots of support.
Finally, get to know someone who has Down syndrome. Assume ability and extend friendship and you will have a friend for life.