Tommy’s respiratory system has always been on the fragile side. Even after he came home from the hospital, we were in and out with bronchitis, asthma, and pneumonia. We spent about half our time at the hospital and half at home.
At many hospitals, a parent stays with an infant patient around the clock, so his big sisters were constantly getting shipped off to Grandma’s 🚗
Between his breathing problems and the fact that he was behind on developmental milestones, his doctor suggested a chromosomal test, just to be safe.
Around his first birthday, the results came back: 48,XXYY syndrome.
I’ll write more about this condition another time. For now, all you need to know is that it’s rare. There were so few documented cases that nobody could really tell us what to expect down the road.
On his doctor’s referral, we started Tommy in developmental therapy and a day program at a child development center. (Japan’s child welfare law has since changed, so it’s no longer called “medical-type” support, but that’s what it was back then.)
He received three kinds of therapy: physical, occupational, and speech.
Physical Therapy (PT)
PT is all about improving motor function. Before Tommy could walk, we focused mainly on Vojta therapy, which stimulates specific points on the body to trigger reflex movements. Once he was walking on his own, we added walking practice to the mix.
Occupational Therapy (OT)
OT focuses on everyday skills and fine motor control. Tommy practiced grabbing objects and dropping them into a box, scooping with a spoon, and so on, all through toys, so it felt like play. There were also trampolines and swings for sensory integration.
That’s why he cried and fought me on PT but absolutely loved OT. (Sorry, PT therapist! 🙇♀️)
Speech Therapy (ST)
Speech therapy covers speaking, listening, and swallowing. Tommy was slow to start talking, and even at four he was only using a few words here and there. His pronunciation was hard to understand, too. If you asked him to repeat himself more than a couple of times, he’d totally lose it. 🤬 The frustration of not being understood was just too much for him.
Straws were a real struggle. Just when he finally figured out how to suck, swallowing became the next hurdle, and he’d cough and choke. Things the rest of us do without a second thought are incredibly complicated for him.
The Day Program
The center also ran a day program where early childhood educators taught communication skills and following rules through play.
Tommy never once separated from me, from the first day to the last. While the other moms relaxed in the lounge, I somehow ended up joining the therapy sessions myself 🤣
Still, this program was great for both of us. It obviously supported Tommy’s development, but it also gave me a place to share my worries about raising a child with a disability with people who truly understood, and a chance to learn about therapy.
Checkups exist to catch kids who could benefit from this kind of support early. That’s why they matter so much. Don’t get me wrong, I’m all for them! (lol)
Until next time!
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