Spending a day on the island of Sodor

At the parenting workshop I attended several weeks ago, we were asked identify our special needs child’s hobbies and interests. I’m sad to say that I was really at a loss on how to answer that question.

Had the subject been my typically developing six-year-old daughter, a host of answers would have sprung to mind. Studying insects, telling knock-knock jokes, riding her bicycle, reading – she is willingly fascinated and voraciously curious.

Seeing my son’s interests clearly is not as easy. His combined cognitive and communication delays, incredibly short attention span and even his extremely go-with-the-flow attitude make it difficult to say for sure what he’s interested in. At home, he often has trouble meaningfully playing with toys; he pulls toys off the shelf, perseverating and cycling through the objects themselves but not always engaging with them in a way that demonstrates genuine affection for them.

The things he does lock on to are often household items and electronic gadgets – keys, the kitchen laptop, the holy iP trinity (iPad, iPod and iPhone) – but nothing he can figure out how to use without tremendous amounts of help and frequent re-booting. He spends an hour begging for me to turn on Thomas the Tank Engine, repeating dozens of times that I’ll put it on when the timer buzzes at 5:00, only to watch for two minutes before abandoning the episode in order to aimlessly wander around the house. He can sit for long stretches of time in his Cozy Coupe on our deck, but it often seems like more of a soothing environment for his nervous system than genuine pretend play.

This realization — that I didn’t know where his perseverations ended and where his interests began — saddened me, stirring up all kinds of emotions about the ways I do and don’t connect with him. It was with some sense of guilt that I also realized that we spend much of our family time doing things that were primarily interesting to everyone else in the family but him, because I simply don’t know what he wants to do. Content to simply be with us, he gladly comes along, though it is not always clear that he would have picked these activities if he could express himself.

It was at another seminar (yes, I do have other hobbies, I swear) by brilliant blogger and author Susan Senator later in the month that I got some great advice. I can’t remember what she said verbatim, but the gist of what she said was basically this: a child’s perseverations ARE their interests, and sometimes it’s better to cultivate them rather than try to eliminate them through therapy. (Susan, if that’s not what you said, I apologize, but as you’ll see, it was what I needed to hear.)

So yesterday our family spent the day with several hundred grey-haired gentlemen at a model train expo. I saw a kid-sized Thomas umbrella, and rather than talk myself out of buying it, knowing it would likely be broken within the hour, I watched as my son’s eyes lit up when I told him the umbrella was his. We stood for a long time at the Thomas model train exhibit, and I carefully pointed out not only Thomas but Percy, Anna and Clarabelle, Trevor, Cranky and Sir Topham Hat, all lovingly assembled in a scaled down version of the island of Sodor by some older man who was so happy to connect with folks who shared his passion.

Reflecting on it now I realize that I have, after all, been pulled into his world. How else am I able to engage in a conversation about the disappointing new CGI Thomas and lament the loss of the old stop-action shows? I can be so hard on myself. Of course I know my child. He may not articulate what he loves as clearly as other kids, but if I take the time to listen, it’s not impossible to figure it out.

Published by Cristin Lind

Facilitator, consultant, speaker for better health and care through patient-professional partnership. Passionate about helping change agents build courage and agency. She/her.

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  1. I think you’re right, taking the time to listen (with ears, eyes and heart), makes all the difference. I can easily see that having you in his corner must make all the difference as well.

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