Bones

We've always believed that Myles is really smart, and he is, but one of the struggles of having a child with Down syndrome, especially with limited verbal skills, is that it is hard to know what exactly he knows. I never want anyone to underestimate him, including myself.

I have a few distinct memories of things that Myles has done that have surprised me in the moment only because I didn't yet realize he understood that concept. Like the first time he followed a one step direction when he was really little (going to get a ball when I asked). It wasn't that I had been trying and he wasn't getting it, it was that I had never thought to ask him to do so, but yet the first time I did he fully understood.

Last week Myles surprised me in a similar way. He and I were talking with my dad over speaker phone. As soon as Myles knew my dad was on the phone, he said "arm" and was pointing to his arm. I knew this was his way of asking Grandpa how his arm was feeling. (My dad tripped and fell down his basement stairs two months ago and had a bad shoulder injury that he has since had surgery on.) I wasn't surprised that Myles was asking about Grandpa's arm because he is a very sensitive kid and remembers when people are sick or hurt. My dad talked a bit about his arm and then Myles started asking to see ("dee, dee"). Because we often Skype/Facetime with family, Myles was asking to see my dad and his arm. I told Myles we weren't going to Facetime, and my dad then said that there wasn't anything to see on his arm because the owie part was inside.

The next part is what surprised me.

Myles then said, "bones." It didn't come out fully clear, so I asked him to say it again, and again he said, "bones." I still wasn't 100% sure, so I asked, "Did you say 'bones?'" To which he said, "Yes, bones."

What? We've never talked with Myles about bones being under the skin. It's possible that this was something they've covered in school, but even then, it's hard to know what Myles is absorbing and what is just going over his head. I've never actually even heard Myles say the word, "bones."

This may seem silly to someone who isn't familiar with Myles or kids with Down syndrome or other cognitive delays, but for me it was a really big deal. I wish I could just crawl inside Myles' brain for even a day to see what is going on. I'm sure he knows so much more than we know he knows, but it's so difficult to figure out how to pull it out of him. We'll keep trying and challenging him and trying some more, because this little boy of ours is smart.