I guess by having this page exist, I can’t really expect people to sympathise when I comment that I feel I should have to explain myself away at times! I mean, I am putting it out there right? I am sharing, at times, very candid moments and snippets of not just mine, but more importantly, my son’s experience with having a substantial disability due to living with HHE Syndrome.
And there I just did it right then, by saying ‘substantial disability’ – just in case someone was looking at the pictures, thinking – he doesn’t look all that disabled. It can’t be that bad. There are far more people worse off. He’s walking, he’s mobile, he looks pretty happy – he doesn’t look like he’s not engaging in the world around him, he’s certainly up and at ’em.
That’s just the thing, you are pretty spot on if you thought all those things, because you see, before I was catapulted into this life.. and I am not going to say anything about me being on a journey, because for me it’s not actually ‘my journey’ – it really is our son’s – Danger. It is his journey and we are the bystanders, supporting him, cheering him on.
So back to what disability looks like or doesn’t look like. It doesn’t look like laughter, engaging with the world around us, experiencing what life has to offer. Is that right? Or is that wrong? Maybe that is the problem. It was only in the 1950’s children like Mikey would have been doomed to a life of being locked away in a home somewhere, deemed not worthy of participating in the community that he was born into.
The thing that I try and do, is to just get out there with him when I can, even when we are burning rubber on Struggle Street. He needs to be included in the world around him, as does the world to him. The only way we can truly do this, is to just participate. So the look of disability/special needs, additional needs – whatever you want to call it!, can sometimes look very familiar, and that is hard for people to comprehend. If he is learning a few words every week, why can’t he just talk? He will eventually right? He’ll grow out of this epilepsy won’t he, his seizures aren’t the terrible ones, they are just small little things, can’t be doing that much harm? If he can walk pretty well with his AFO why can’t he just not wear it and see how he goes? Unfortunately, like most things in life, there are layers to his condition and it is not quite that simple!
We have to be very careful if we overload him too much physically and sensory wise, as it can take him a good two to three days to recover and get his energy levels back. He may bite for attention or hit out, have melt downs for no apparent reasons, other than he just looks like he’s being a spoiled little brat, particularly if we are in a shop! He looks like the big boy who is acting like a 2 year old, but there is a reason for that.
Danger has an amount of brain damage from his initial seizure during his first year of life that has greatly impacted his cognitive and fine and gross motor skills. Daily therapy (we don’t even know we are doing therapy some days, that’s how good we are at this after four years!) is needed so that ‘he looks fine’.
I know I am not alone when I say that ‘looking fine’ is very different to being neurotypical (NT). Which kinda means, developing as one would expect without any brain damage incurring whether through traumatic events or medical issues.
So in regards to explaining myself, I guess I just want to make the message clear that this is a changing landscape and there are some things that dramatically need to change, including our views on what disability should or shouldn’t look like. I do believe that we are able to do that in this country, which I am very grateful for. And I think the social interaction of sharing online is wonderful, but for us, it’s also about getting out there to live and breathe it all in!