Sunday, October 5, 2014
31 for 21: Where We Are Today, Part II
From time to time, folks do ask me what it means, day-to-day, to have a toddler with Down syndrome. I did this last year, so here's an updated version.
A mix of low muscle tone and delays in cognition mean that Max is noticeably behind other 20 month olds in his skills. Where others are running, he isn't crawling yet. Where most have a few words, he doesn't, and he's still unsure about how to use the signs he knows. He knows how to "army crawl" across the floor, but he'll only do it when he really wants something.
He's been expressing frustration more frequently, lately, and he's also getting more mobile, bit by bit. Although I certainly want him to grow in his communication & motor skills, I'm pretty sure my life is going to get more difficult as these two skills, in particular, develop.
Max gets an hour each of physical therapy, occupational therapy and speech therapy every week. On non-therapy days Max & I attend Toddler Storytime at our library and a Parent/Child tumbling class. He's got a different set of skills than the other kids his age at these programs, but he holds his own. He loves the one on one attention of the therapists and the energy of the group classes. Max is the first to clap for his own accomplishments, he knows when he's done good and he wants everyone else to acknowledge it, too.
Max's health is pretty good -- but he knows how to keep me worried. He spent several nights in the hospital last spring when he had croup, and he's had some ongoing digestive issues. He's had a bit of trouble putting on weight, so we're now pretty aggressive about feeding him. Over the summer he got tubes for his ears and braces for his ankles. These are all small things, none of them exactly caused by his extra chromosome, but all of them complicated a bit by it. The combination of it all, however, sometimes weighs on me. I worry about this little guy, and there are days that keeping on top of his health is tiring.
I don't mind getting questions about Max's development -- mostly because I love bragging about him. He might be chugging along on his own schedule, but I still love talking about how he surprised his therapist by stacking blocks or how hard he's been working to push up into crawling position. So for those who weren't sure how to ask, this is where we are today.