13 Things I Want You to Know During Down Syndrome Awareness Month
Here are 13 things I personally would like you to be aware of regarding Down syndrome:
1. I’d appreciate it if you used people-first language. It’s simple. All you need to do is put the word “girl,” “kid,” “baby,” “person” before the words “Down syndrome.” Just say, “child with Down syndrome” instead of “Down syndrome child.” This is because Down syndrome does not define my child; it’s just a small part of her.
2. Don’t use the R-word. When it’s used, it’s used mostly in a derogatory context. However, the word is even being phased out of the medical community and stripped from government policies. It is offensive, especially to those who have intellectual and developmental disabilities.
3. My child is not “suffering” from Down syndrome. She may have some extra medical issues or may be a little behind developmentally, but she will get to her milestones eventually. She is a happy child, and happy children aren’t “suffering.” She’s well fed, has a roof over her head and is very loved.
4. My child has more potential than you know. People with Down syndrome get an education, hold jobs, drive cars, get married and own businesses.
And how about awareness on the mom of a child with Down syndrome:
5. I am not unhappy. I love my unique family. Just like the mom who always wanted a girl but got three boys instead and now can’t imagine life any other way — that’s how I feel.
6. Sometimes I do get sad. When she’s with her typical peers and they’re running around and she’s trying to catch up by awkwardly hopping around on her butt because she can’t walk or crawl yet. It’s sometimes hard to watch, but I don’t see sadness in her, and I know she will get there eventually.
7. I’m busy taking my child to medical appointments and having therapists in my home, and therefore have less time to be social these days. I really wish I had more time and hope that people understand.
8. I can be overprotective. I’m overprotective at times because I worry about how others might treat my child or judgments they may make, so if I initially come off as cold, now you know why.
9. I’m scared of my child getting sick, so I’m also overprotective when it come to germs. I tend to get extra neurotic during cold and flu season, so once fall comes around, I become less social. I think it will get better over time, but for now because she isn’t even 2 yet and because she has those small nasal passages and low muscle tone, respiratory illnesses are sometimes hard to overcome, which can lead to hospital stays.
10. I rely on other moms who get it. Many of us have turned to the internet for support in groups, such as the Down Syndrome Diagnosis Network. We consider each other close friends although we may have never met face to face.
11. I know much more about medical terms than I ever thought I would, not only because my child has extra medical needs but more so because I now know so many others who do.
12. I know someone else whose child has passed away. When I decided to get involved and get connected, I met families who have children with Down syndrome from all over the globe. Everyone is on a different path in their journey. Some children sadly succumb to an illness or heart defect and we all grieve like it was our own.
13. I would love to tell you about my child, so don’t be afraid to ask me questions whether it’s about her or about Down syndrome in general. I knew nothing about Down syndrome before I had my child, but now I’m able to educate and I’ll be more than happy to do so. I won’t hold back on telling you how amazing I think my daughter, Gigi, is and why we really are part of the lucky few.