I discovered in a phone call yesterday that Carys’s potential to one day walk is not down to her physical development, or physiotherapy, or even budgets and funding, or lack thereof.
No. It’s down to politics.
You will no doubt be aware of the ongoing saga of the AFO’s. After several return visits for ‘re-assessment’ and further ‘fittings’, they still don’t fit; how her previous therapist suggested she should just bear the pain, or wear them for an hour a day, because it was better than nothing. Here we are, nearly a year later, and Carys still doesn’t have a pair of AFO’s which fit her.
Her physiotherapist, in that same phone call, informed me they (either the company which makes them, or the product itself, she wasn’t clear which, but ultimately it boils down to the same thing) were ‘shit’… her word, not mine, although I am inclined to agree with her.
And I have finally been pushed into reaching that point where I have lost all confidence in ‘the system’.
I believe the HSE has failed Carys, and I have allowed them to do it.
I could fight, and I applaud those who do, or I can put my energies into something more productive for Carys. I have chosen the latter.
I have taken advice and guidance from someone who, in the few short weeks he has known Carys, has already made a difference.
Back to basics we go; Carys is double jointed at the hips, hence she has no strength and power there, and her body is all out of alignment. No wonder she can’t walk, or even stand without support. I had always wondered at her lack of balance. No one seemed to have any answers.
Now I know that we have to work on her core muscles for stability and balance. Her brain needs re-educating with regard to moving her body. We need to build strength. We have a looooong list of exercises.
It’s starting to work. She wants to walk. She tried to climb onto the sofa the other day, and on another occasion, I found her standing on top of her toybox. I nearly fainted… how the hell did she do that? She has never previously tried such things.
Forget the AFO’s. The problem was never her ankles, it is her hips. Six years she has worn those things, with not even a sniff of improvement. Imagine your foot being held rigidly at a 90 degree angle inside a thick heavy hard plastic casing from your toes to your knees… this is supposed to help a child who has never walked learn to walk? Not surprisingly, it hasn’t. If you don’t work a muscle, it wastes, right?
On Sunday, Carys was fitted with orthotics for her pronation. We put her on her feet, and immediately, she stood for 20 seconds all by herself, without a wobble, without holding onto anything or anyone. It was an amazing moment. She proceeded to walk up and down the shop quite happily, holding onto one hand. She then walked at short intervals around the shopping centre. Happy. Normally she hates shopping centres and crowds.
Forget the walker. She’s had it since she was three. She’s now nearly ten. She still can’t steer it, or do anything but walk in a straight line with it, at a painfully slow rate. If it catches on a wall or door frame, she’s stuck there, unless someone rescues her.
At home, we are using her Walkolong. It is a foam tube which wraps around her chest and fastens with two straps which the parent hold onto the ends of. It offers a little support, if she needs it. She walks all around the house. We no longer need to carry her from one room to the next. She chooses where she wants to go, at what pace, stops when something catches her interest, continues when she’s ready. A taste of independence. And she’s loving it.
So much so, that I suggested during my telephone conversation with Carys’s physiotherapist that I bring one into school for her to use there.
“I don’t know,” was her reply. “I’m not sure what the politics would be about that.”
I came off the phone incensed. I thought we were all working towards the same goal. I thought the important thing was Carys’s mobility, her independence, her enjoyment of life, her well being. Seems I was wrong about that.
I understand the need for safety. I wouldn’t expect anyone to compromise that. But its about time the HSE crawled out of the dark ages. Their politics will not help Carys, or any child, walk.
I will do whatever it takes to help my daughter achieve her full potential, whatever that turns out to be. And I feel hopeful again that one day, she may be able to walk a little.
Won’t that be something?