Realities of Spring When You Have A Child With CP

Realities of Spring When You Have A Child With CP

Springtime in our neighborhood seems like a Disney movie, minus the princesses unless you count us ravishing suburban moms. First the daffodils burst into bloom, then the tulips. The grass turns from brown to Technicolor green. The birds chirp away and soon poop on our deck. (Oh, wait, not a Disney movie.)

Spring is also the time when I ponder how Max is budding…or isn’t. It’s a moment of reckoning for me, in many ways.

Some people have seasonal allergies. I suffer from seasonal realities.

For one, the children and teens in our neighborhood come out of hibernation. I see how much they’ve matured, and what new things they’re up to. That baby is now talking up a storm. That kid who was a toddler last summer is now zooming along on a kiddie scooter, something Max can’t yet do. The teen boys bounce en masse on a trampoline, which Max couldn’t handle without me holding his hands (the last thing any teen boy would want).

I’m mostly at the point in my life when I no longer compare Max to his peers, something I did compulsively when he was young. It did neither of us any good. But the explosion of progress I notice every spring is an annual shock to my system.

In general, Max’s physical gains are coming more slowly now. Although he is capable of walking stairs upright, he still prefers to clamber up on his hands and knees. He hasn’t made notable fine-motor skill advances. In fact, one of his OTs recently told me that she didn’t feel there was much more she could do to help him, and is recommending we do an intensive neurosensorimotor reflex integration program instead of seeing her.

This spring brought the added challenge of a high-school search. I tried and tried to find a public school with an integrated program. Max has thrived in a school for students with special needs all these years, but I thought a population with a variety of abilities would best prepare him for the real world. He got flat-out turned away from one school that said they couldn’t accommodate him academically (yes, that’s legal) and there were no other programs that fit his needs. I had to come to terms with that. He’ll be heading to an excellent school for students with disabilities but still I felt like I failed him.

Max’s IEP happens in spring, too. As any parent of a child with disabilities knows, this can be a sobering process on many levels, especially because you are forced to confront the “nots”: “Max does not use complete sentences to identify the main idea in a book…. Max does not cognitively think through the problem to check his answer…. Max does not write or verbally initiate writing creative pieces such as a nonfiction story.”

I hate the nots. Forget you, nots.

But I can’t.

Each year, as enchantment unfolds outside, I’m going through inner turmoil about my beloved boy and his future.

Ah, spring.

Replanting the positives helps my perspective. That’s something I’ve learned over the years. While I recently sorted through the shirts, shorts and swimsuits Max has outgrown, I considered some other growth spurts he’s had this year. He went to a prom; learned to program my phone calendar (and scheduled a visit to Disney World); started to appreciate Saturday Night Live (thanks, Alec Baldwin!); and wheeled his baby brother around in a stroller on his own. He even walked across The Brooklyn Bridge, a feat that once again made me think: If only those gloom-and-doom NICU doctors could see him now.

Standing in Max’s room, the pangs of gratitude and sadness and anxiety all swirl together, an emo mix as familiar as the scent of new grass on our lawn.

-Ellen Seidman, Love That Max