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Open Mic: The Values of Down Syndrome

On the 21st of March, we will be celebrating World Down Syndrome Day. Some of you may have siblings or know a person who has this syndrome, or some of you may have heard about it for the first time when Lucas Warren became the first Gerber Baby with Down syndrome.

          What is Down syndrome? Many of you may have heard of it but not necessarily know what it is. In short, it is a genetic disorder that results in varying levels of mental impairment and physical disabilities. Along with this, many different medical issues often occur. Many people with Down syndrome have stunted growth and more troubles learning. Commonly, they start speaking much later than other children do. About half of the people with Down syndrome suffer from some sort of heart condition and many times require surgery at very young ages. Several children in our local Down syndrome support group (including my little brother) had open heart surgery when they were under the age of 4. This may seem overwhelming, but there is much more to their lives than medical bills and struggling to learn.

Timmy Milbrath

Some of you might be wondering what life with a child with Down syndrome is like. Well, as with any child regardless of how their chromosomes split, there are ups and downs. Due to his slower learning speed, we have had to work a lot harder at teaching Timmy. For the first few years of his life, he (and to a small extent and for the fun of it, the rest of us) communicated exclusively through sign language, and even now he still needs speech lessons twice a week. To be fair, he makes up for those silent years, and most of the people we know can understand him very well. He didn’t learn how to walk until he was around three, and until that point would scoot around on his rear.

After he learned those basics of moving and talking, came the long road of teaching him school. Reading is still a work in progress. Even after a few years of hard work, he still needs help with some of his basic math problems. In addition to that, he frequently wants us to play with him, and that causes all sorts of distractions for him.

Yes, it can be hard. Yes, sometimes I would rather just do my own things instead of play with him. But let’s face it: would that change if he didn’t have Down syndrome? The answer would be a resounding “no.” For those of you with young siblings, you probably know what I mean.

Life with Timmy has blessed us in many ways. We have learned a lot about patience and perseverance. His 9 or so surgeries have given us a great experience with the medical world. They have also shown us just how strong our friendships are with many people from church or our friend groups. Because of him, we have met many different families through the local Down syndrome support group, and the benefits from that have been numerous and far-reaching.

Probably one of the most entertaining experiences with him is the “chore” of “babysitting” him and his seven-year old best-friend. I have the excuse of being able to play with them in a way that no “normal” group of teens would probably ever think of playing. Running around outside, fighting countless invisible enemies, or playing random games in our backyard are things I thought I would have to stop doing once I started high school.

           My little brother will be having his 12th birthday this March, and those have been 12 years none of us would think about changing. Timmy has brought more joy, excitement, and sometimes fear into our lives that we would never exchange for anything else. Because of the syndrome, he isn’t like other 12-year-old kids. But we wouldn’t change him for anything in the world.

https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

https://www.washingtonpost.com/news/inspired-life/wp/2018/02/07/lucas-was-just-named-2018-gerber-baby-he-has-down-syndrome/?utm_term=.f93a4fd48d9

http://www.un.org/en/events/downsyndromeday/


Meet the Author

How old are you?

Ryan is currently 17, but will be turning 18 in April.

Where do you live?

I live in Freeville, New York (Upstate region).

What classes are you taking with TPS?

I am taking Spanish 4/5 from Sr. Poortenga.

What’s a fact about Down syndrome that most people would not know?

There are three types of Down syndrome: Trisomy 21 (3 copies of 21st chromosome instead of 2 in each cell. Timmy has this type), Translocation Down syndrome (part or entire 21st chromosome is attached to another chromosome), and Mosaic Down syndrome (only part of the cells have 3 copies of the 21 chromosome).

6 Comments

  1. Thanks for this article, Ryan. Down syndrome children are definitely some of the most joyful and sweet people I’ve met in my life!

  2. Thank you for writing this! While it made me sad (my sister might have Down syndrome but for sure has other issues) it made me understand her more. Thanks again for writing about this!!

  3. Corrie Anna Campbell

    Great job, Ryan! Thanks for introducing us to your brother. 🙂

  4. Thanks so much for writing this! It has made my day. My brother Jacob has Down syndrome so it made me smile while I read this because your brother sounds so much like mine, fighting invisable bad guys, always wanting to play, and still learning to read. 🙂

  5. I am a little person and I have a down syndrome brother and a sister with mental issues I love your article its good to know people care about downs syndrome

  6. Thank you so much for sharing this. I’m sad that I missed World Down Syndrome Day! I am very passionate on the topic of caring for those with Down Syndrome and it is so nice to see someone else who cares. I admire you for all you do for your little brother.