By the way

Last month I took Smacky to the developmental pedi in Boston for a followup on his existing PDD-NOS and developmental coordination disorder diagnosis.  Diagnoses? Diagnosum?  Diagnoses, is the proper term, I believe.  The lovely pediatrician arched her brows sternly at me when I informed her that his school denied him speech services, won’t offer ABA to even the kids with classic autism and because I must pay out of pocket for what he needs and my husband is still out of work, I can pretty much afford just one therapist at a time.  For the past months I’ve chosen to stick with just physical therapy because some days my child can’t walk without falling on his face all day, and as his mother who knows him best, I feel that’s his most urgent need at this time.  The doc went over a concerning anecdote on Smacky’s spectrum testing from last year – she feels though he has a good grasp of language, he uses it in a “different” way – this is how it went down at the testing:

SPL (speech language pathologist) had set up a play-set barn with farm animals, a farmer and a tractor.  Initiating pretend play, she was looking to see  how he’d respond to certain situations.  At one point, the farmer was riding on the tractor.  She asked Smacky where the farmer might be headed next.

Smacky (pushing the tractor): UM, to the library.

SPL (writing furiously on her pad): Really?  What might he do there?

Smacky: No, no wait.  Not the library – he’s going to STARBUCKS!

SPL laughs.  Assistant laughs.  Collective laughter heard from behind the observation mirror.  I giggle because it’s cute but also know that he got that from seeing a tractor on a small farm we pass in town on our way to the library.  Sometimes we pass the library to go to YOU GUESSED IT, Starbucks.  I saw his response as perfectly logical and animated and enthusiastic and realize right away they were looking for him to suggest driving over to check on the cows or the cornfield or some response much more FARM related.  I try to inform the SPL but she’s got her finger up and on to the next assessment piece.  Smacky doesn’t do himself any favors by ignoring her a few minutes later, choosing instead to  recite the colors of blocks in front of him in freakin Mandarin, which he learned from Ni Hao Kailan on Nick Jr.   That got everyone writing in their pads and though I protest, I’m not sure I’m really heard.  Later I whispered to Smacky during a break IX-NAY on the CHINESE-AY and he simply started laughing and telling me every Ni Hao word he knew in what sounded like a crazy-accurate accent with the proper inflection and everything.

I know my son.  Smacky  spews information to initiate conversation.  He’s hyperlexic, and immerses himself in numbers/symbols/math/syllables when he’s nervous or feeling overwhelmed.  Once he settles and calms down, he reverts to completely normal give-and-take with his peers.   It was with this knowledge that I didn’t feel the urgency to push for speech therapy for him.  With practice (and a lot of leaning from me), he’s become much more conversational in a typical sort of way.  His quirkiness seems just that; he’s a bit shy and slow to warm up but once he does he’s fine.

Dr. PDD-NOS disagreed – she wants SPL therapy this summer, immediately.  I conceeded but pressed to know why  Smacky has days where he truly can’t walk.  It’s as if the signal from his brain just doesn’t get to the muscles right away.  I see something similar on the on the playground when he’ll for no known reason and without warning lose his grip on the equipment and fall to the ground – again, like the neurotransmission is interrupted.  What else besides autism explains that phenomenon?  Because I’ve consulted with Dr. Google and there is more than a hint there that what we’re looking at is perhaps some cerebral palsy, for which he (we) hit most of the risk factors.   Also, what’s with my son clubbing his hands?

She agrees it’s worth a look.

And tests his reflexes.  And tests some more.

We’re seeing a neuro later this summer with an MRI.  And yes, the reflex testing she conducted does indeed confirm a diagnosis of mild cerebral palsy.   Will you remove the PDD-NOS then? I urge her.  Nope –  not until I get him speech, and she’ll retest early next year after he’s had the benefit of speech therapy.  But for now, I’ve got to get him hooked up…I actually think he’ll find it fun.  I’m looking for private sessions as well as signing him up for a six week group social speech session at a little place nearby which specializes in activities for special kids.

But yeah  - cerebral palsy…can you imagine?   I spent a few days being sad about it but it is what it is.  I’m looking forward to seeing what this neuro says and exploring new options for helping him.  CP isn’t progressive; right now is as bad as it’s going to get and that’s good.  The fact that we’re lucky he’s so high-functioning isn’t lost on me either – I’ve seen the wheelchair-bound kids and know we’ve dodged a huge ugly bullet.  But my heart does break when Smacky gets all floppy and hurts himself.  I see his frustration when he falls on other kids and they react in anger – he can’t possibly explain his situation to another 5 year old – how he was having fun running playing tag but suddenly he couldn’t feel his legs anymore.  I feel more certain than ever that his longstanding anxieties stem from his inability to trust his own body and am so grateful that he’s been given an intellect where he can immerse himself in a world that doesn’t require perfectly-aligned bones or working muscles to thrive.   I will continue to give him exposure to everything, including some sports (which is good for him – he needs to keep those muscles moving lest they freeze up …he’s now on a want-to-play-tennis jag) but I have to trust him to lead.

Lately, he’s shown an intense preoccupation with singing – he likes Train and Backstreet Boys and belts out the tunes from the back seat of the car.  I look at his highly athletic little brothers (omg their father’s hockey genes are alive and well) and know they’ll watch out for him….when they hit school, Smacky will help with their homework while they tag-team anyone who gives him grief.   At least this is how I see it, for now.

Sometimes I just need to fit it all into a place in my mind so that I can cope easier.

So that’s that.  CP and autism.  Blah.

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