If we pushed our son more. If we insisted that he do more stretches and more physio. If we told him categorically that he has to wear his gaiters/his special boots/his Lycra shorts every day.
Perhaps if we did all these things, he may be more mobile now.
In fact, I think he probably would be.
I believe this is the opinion of some of his therapists and doctors and even some friends.
Although they are very kind and don’t say so in as many words, you can tell what they’re thinking.
This hurts. It makes us feel as if we aren’t doing the best for our son. When of course, all we want is for him to be as mobile as possible.
For him to have more independence and freedom to explore.
But the reality is, he doesn’t like doing these things. He really doesn’t. And boy does he let you know about it!
So much so, that we very often give up trying.
Because we feel sorry for him.
I hate that we feel sorry for him. It seems so wrong, but we genuinely do. I feel dreadful for him every day and would change places with him in a heartbeat.
And because we don’t have the energy to fight him on it. So we feel guilty and we feel that we are being judged for not helping him to achieve more.
But shouldn’t we be listening to him? He’s not sitting on the fence. He’s adamant that he doesn’t want to do these things and that’s one of the only things he has control over.
He doesn’t see his twin sister in a walker or doing exercises. He sees her jumping on the sofa, doing puzzles, playing in the garden and reading stories to her teddies.
That’s all he wants too isn’t it? To have fun. To be a four-year-old.
So should I feel proud of myself for allowing him to be free to watch back-to-back Thomas and Friends, whilst eating biscuits draped over the sofa (in a position his therapists would crucify me for), instead of spending some quality time in his standing frame learning how to hold a pencil? And then there is the other issue of time.
How on earth would we find the time to do everything that is needed to ‘bring him on’ faster anyway?
He has very little sleep, so is exhausted most days. As are we. He doesn’t eat well, so mealtimes are long and stressful and take up a significant part of the day.
We have pre-school and horse riding, family visitors, hospital appointments. Plus we have another child. She can’t be forgotten and has to put up with a lot as it is.
There is barely a minute to breathe and there is definitely no time for housework.
Most days I feel grateful just to have gotten them in to bed in one piece.
I wish he would let us push him more. But he won’t at the moment and if we do, I think he will just end up more cross and frustrated.
For now I am just going to have to learn to be grateful for what we do achieve. We do lots through play and that is helping. But it’s slow progress and that’s a worry.
Especially as we prepare him for school this September (gulp!). But that’s another story altogether….