Wednesday, 25 June 2014

Are we really that far from 'normal'?

It's been an interesting few weeks. We finally got a diagnosis for C, only to discover that the diagnosis had been sitting in the 'books' for at least one year. A monumental stuff-up with the hospital administration meant all correspondence was going to the wrong doctor...

...but it's OK now. I'm OK with that, I think. The diagnosis was not unexpected either - Cerebral Palsy. After all, the specialist who's been treating him is a world-class medical researcher into CP. But still, it is ... interesting.

We now have another set of letters to add to the list of medical conditions C has been accumulating.

And yet, and yet. My heart still wants to say, 'We're not that far from normal, are we?'



Even though I know my research, I know the statistics, I still can be triggered into this useless spiral of thinking...

...and the trigger this time was C's OT, who on being told the diagnosis, replied, 'well it must be very mild, because he doesn't look like he has CP.'

Pause. Breathe.

As usual, I didn't know quite what to say ... how to point out that we've been doing 4 years of therapy now - physiotherapy, podiatry, injections, and yes, OT, (and probably other therapies that have slipped my mind, it's like that) all in order to get C closer to that elusive 'normal'?

If the monumental effort works, if with a lot of patience and hard work he can get close to looking normal, does that mean he's not disabled? Does not looking disabled mean it's not real?

If when he walks, his gait is almost-normal, does that mean it's all OK and we don't need the huge amount of help?

Has the mountain of the impossible shrunk a little bit? Is this all in our head?

Was I being silly, and over-protective? Maybe he really could participate in 'normal' activities...

...of course those thoughts don't last long. We do, you see, try to give him 'normal' activities, and one of those is Karate.

Twice a week, he shows up to do 50 minutes of Karate lessons with a mixed-age class. It's noisy, it's fast, and they expect the kids to be able to follow instructions.

My DH usually takes C, and that same week, he told me C actually had a good session - he paid attention (mostly), he did the moves (mostly), and even kind-of stayed focused for most of the lesson. We'd done some therapy just before his lesson to help him concentrate. Yay! I thought, progress! And then DH added the kicker. Where the rest of the class had one instructor for every five, this week, as they had extra, they had assigned two instructors just for C.

Later, for his birthday, he asked if he could not go to Karate, just for that day. My heart almost broke. Did he hate it that much? But next lesson, he loved it - they did something vaguely intellectual and it was something he knew all about - the Fosbury Flop. And he loved Karate again. And on it oscillates, in a weird love-hate relationship**.

That's our normal.

With the right supports, my beautiful C can do anything - even act like a 'normal' kid. It just requires intense scaffolding. He may never play soccer, but just maybe, one day, he might be able to kick a ball straight, or ride a bike, climb a tree. Who knows? I'm not going to close off any options, he can do anything he wants to do. It just takes more effort. Much more effort. But thank goodness, for us it's still in the realm of 'plausible'. It's still in the realm of 'almost' normal. Of course, the window for helping kids with CP is very narrow, and is almost closed. It's just. It's hard to process.

And I'm still processing it. Every. Single. Day.

All the therapy? The equipment? The necessary limiting of too-loud social outings? The preparation to get the kids out the door; the many little ways that my boy needs that bit of extra-help with day-to-day motor functions?

I think about how C needs to do calming exercises before formal lessons so he can concentrate. About J needing help to de-stress throughout the day. And after the long days with high sensory input, how they can both be a sorry mess in the evening.

After the years we've been doing homeschooling, we're finally getting used to the rhythms of it. And I'm starting to accept that we might be in this for the long-haul. Because these things are the best options for my kids. And maybe, just maybe the best thing for our family, and myself.

Those long insomniac nights of worry start to fade when I see how happy my kids are, how certain they are in themselves, and how much they love to learn and play and create.
 
We're not normal. Some days we come close to faking normal. Some days we don't. And I'm OK with that. I think.


** And as a result we've now decided that he really does need more support, and have contacted Access for All Abilities to look for a gymnastics program that's able to support him at his current ability level. Sometimes, you really do need more scaffolding.

2 comments:

  1. I have been trying to put together the proper comment for this post for about a week now...I love it, and wish I could find the best supportive words for you. I think you are doing a great job, balancing between knowing how much help to give, and how much space to give. The acceptance our own "normal"...it's a challenging prospect sometimes. Hang in there. :) ~Nikki

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    Replies
    1. Thanks Nikki. Yes, what we do is normal for us, but it's easy to forget how far that can be from other parents' and families' experiences. That's why I love reading about other families like yours who share many of our challenges. It helps.

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