1/ I have a 13 year old with Down Syndrome. Here is an example of a small interaction that I wish would go differently, but rarely does. Sometimes I have the time and patience to have a discussion in real time. Sometimes not. A thread 👇 🧵
2/ I take my daughter to the doctor many times per year. Often this means a needle (blood work, vaccine, etc.). This is where I COULD talk about how I mentally prepare her. Talk to her about what is going to happen ahead of time when we get to the doctor.
3/ That does not work. Not when I have done it and not when a well-intentioned medical professional does it. I tell her we are going to the doctor and how long it might take. When we get there, I tell her what is about to happen and that it will take just a moment.
4/ You know what? She's fine. We chat. The deed is done. No tears. No anxiety.
5/ If the, well-intentioned, medical professional tells her it's going to be okay or talks about it and tries to explain that it's no big deal, there are tears, anxiety, and fidgeting. It becomes a struggle. Why?
6/ Kids with Down Syndrome don't process information in the same way that neurotypical children do. In many cases, they may not have developed the ability to process upcoming events at all. This leads to anxiety and questioning. Questioning that cannot be processed to resolution.
7/ So what can be done? I wish I had read this book years ago. If you truly want to understand on a pragmatic level start here: goodreads.com/book/show/29331083-supporting-positive-behavior-in-children-and-teens-with-down-syndrome
8/ Some small steps:
- Many kids with Down Syndrome look smaller than their age. Despite this, try not to infantalize them. When in doubt, talk to them like you would a teenager.
- Kids with DS can handle a lot. The world tries to keep them young. Respect them, instead.
9/ If you learned something new today, that's awesome! 🙌
That was my goal for my daughter. If this resonated with you, consider sharing the first tweet in this thread so others can learn as well.
Thank you.