My son Aiden has cerebal palsy, manifesting as triplegia. Both his legs and his left arm are affected. While the stroke that caused his condition created substantial damage, his disability is fairly mild which I suppose categorizes him as ‘high functioning’. For this we are immensely grateful.
He started crawling at 18 months, but now that he’s just turned 2, all efforts are focused on getting him walking. To this end he had Botox treatment in both legs a week ago. And it’s made a huge difference. From the next day he showed an unprecedented interest in walking. And two days ago he suddenly started using a walker independently.
This is a massive breakthrough. It’s opened up a new world for Aiden, and it’s amazing to see the sense of accomplishment written across his face. The word we’ve heard most often in the last week is ‘self’ and he’s testing the limits of his independence with every step. It’s wonderful, exciting, rewarding.
So why am I feeling so anxious? I’ve identified three main concerns.
1. Our house isn’t very walker friendly
This fact dawned on me as I watched Aiden trundle down the passage. I’m suddenly dreaming of a modern house, filled with open plan spaces on a flat piece of land. What I have is an old house, full of tight corners, on a hill. And it’s filled to bursting with stuff. The play room is a particular minefield to navigate – we have very few cupboards so toys pile up all over the floor.
We can’t afford to move, nor do we want to. So we have to make a plan with what we have. We’ve taken all the unused occasional furniture and stored it in the garage. We’re selling a couch. We’re building a floor-to-ceiling cupboard for the toys. And who needs a coffee table? That’s gone too. But some major decluttering is in order and I’m wondering where I’ll find the time or energy for it with two boys under the age of four. At least the interior of our house is all on one level. For that I’m grateful.
2. Going places just got a whole lot more complicated
It occurred to me, that as well as the nappy bag, from now on I’ll have to pack the walker too. And I’m thinking of places we frequent, and how many of those aren’t walker friendly. Plus we need to build in time for Aiden to actually walk – a slow and unsteady process at this stage. So we’ll start leaving earlier for things. And learn to live at a slower pace for a while. And pray for lots of patience.
3. The level of effort has changed
And by that I mean my level of effort has changed. When Aiden started crawling it changed our lives. The pressure before that had been immense because we had to carry him everywhere. When he was crawling I could leave him to it and he’d make his way where he wanted to go.
But with the walking we’ve gone back to a more intense involvement. Someone’s got to walk with him – helping him adjust course, steadying him over bumps, assisting when he trips or slips. And now that he’s discovered moving in this way, it’s all he wants to do. I want to encourage him to walk as much as possible, and develop this independence, but I get slightly panicky when I think about how much my days are going to change.
The thing about having a child with a mild disability is that you’re tempted to just carry on as normal. Except that there’s an extra level of complexity to everything you do, and I’m learning that the nature of this will change as Aiden achieves new functionality. But we’ll adjust, and soon this will be our new normal. That is, until the next change ushers in another new phase.
But more importantly, I need to get a handle on this anxiety so I can properly celebrate what Aiden has achieved. There will always be new challenges ahead. But these victories – they are momentous. And they need to be recognised and enjoyed. Because actually, it’s the victories that give you the energy to face the next hurdle.