Let’s be honest about this – it doesn’t always get easier as they get older and it’s not just about my son’s size, it’s my mind set too.
When he was little, I had no idea what he would end up like. Like all parents – I just couldn’t picture it. People would say “don’t you worry about what will happen to him when you are old?” or “don’t you get upset thinking about what his future will be like?” Yet my answer was honestly – No! I just didn’t see the point in worrying about it. I always thought it would get better, or perhaps the thing that I couldn’t imagine, was how he could possibly become too much for me to handle. You just think there will be an answer. I always told myself, it will be ok.
However, as he has got older – the realisation of the magnitude of the responsibility I carry has sunk in. Facing the fact that Jack will need lifelong care is now compulsory – there is no getting away from the fact that this will always be hard and that there is no real answer, except – acceptance. I used to bury my head in the clouds, believing that he may just miraculously improve.
Now don’t get me wrong. My son has done things I never thought possible. He rides a bike, he can swim, he can read a little, he can write (when he chooses to), he interacts with us, he sometimes gives us hugs and he has found a way to get the majority of his needs met.
What I am talking about is his level of need, the severity of his condition and the restrictions it puts on him. These restrictions increase year by year.
When he was little, I could chuck him over my shoulder if I needed to or stick him back in his buggy. I could set rules and stick to them, I could keep chocolate out of his way, I could avoid shops I didn’t want him to go in, I could get babysitters, people would come over for BBQs.... we still had some normality. He couldn’t reach the top shelf in the house or unlock the front door. We could have children over to play.
You could take him to parks in the daytime without fear of him harming others or taking himself off to the nearest shop. He wasn’t too big to go on a soft play and we could follow him around it, without the disbelieving stares at a teenager belting it round a soft play, whilst two middle aged adults chuck tiny children to the side to keep up with him.
We could take him into the community without fears he would become aggressive, and he was nowhere near as loud!!
There are some behaviours he has never grown out of such as creating tsunamis in the bath, or blocking the toilet on purpose, or playing with poop (I actually dream about this behaviour too. I think I might need a bigger dream catcher). There are some behaviours we think he's grown out of, but just as you dare to think it's been a long time since he's done it, he'll start doing it again. We learnt this when we left the window in our room open a smidge on a hot night, believing the thirteen stone version of him would no longer try to get out of them, only to find him hanging out feet first, clutching the windowsill. Yep, still no fresh air for us!
There are some behaviours you can look back on and feel relief they don’t exist anymore but also wonder if they will ever come back. Such as when he had to have 10 changes of clothes a day because he would suck and chew them!
The point is, the bigger he gets – the more difficult those behaviours are to deal with – before you fight me on this, let me ask you... cleaning up a three year olds poo or a fifteen year olds poo?? Thought so....
I no longer have control over what he eats or does, and if Jack wants to do something, believe me – he is going to!
If he walks out the house and starts heading to the shop – you're following. If he wants another chocolate when you are out, despite the rules, visuals and tokens – he is having it! He's heavy, strong and hugely tall, and he knows it.
So the best I do is – to continue to come up with strategies and techniques, social stories and cards and be thankful for the days he sticks to them, to always remember the positives of what he has learnt to do, focus on the days when he is our cheeky happy boy – but most importantly.....
Keep hope, that one day - someday.......we’ll be able to open a bloody window!