Half term is over and it’s gone better than I thought. Jacob’s new medication seems to be having a positive effect and controlling, all be it to a small extent, his more distressing symptoms. This is the third medication we have tried for this particular set of symptoms which his paediatricians (and us!) don’t properly understand. On Friday I really enjoyed his company.
I took him to an event that would really suit his need to be in a calm environment. Whilst waiting in the queue to go in a mum with small children chats to Jacob encouraging her somewhat weary little boy to say hello to my somewhat rowdy big boy. He’s not too sure what to make of him. There’s also a young man from Jacob’s school in the queue and a small group of disabled young people and their carers to talk to. . We moan about the weather as it starts to rain and soon we’re aloud to go in. It is indeed the perfect environment for the little man. He is the calmest and stillest he has been all week and I enjoy simply sitting with him, being with him without any shrieking, panting or thrashing around. I get to chatting to one of the attendants about Jacob’s needs and how he’s undiagnosed and how we don’t fully understand his symptoms. He speaks to someone and says we can stay as long as we like. Such a kind gesture. Jacob and I lie on the ground looking up at the lights and instead of him grabbing and wrestling with me he’s quite still and he twiddles my hair. I love these moments when I feel like I can really see him as he would be without all the other stuff getting in the way.
When we’re in the café later I think about how kind and understanding people can be. It didn’t used to be like this did it? I remember the lady at our local “well known pasty outlet” saying on Saturday when we went in for a sausage roll “We were just wondering when you were next coming in!” He is a kind of “once met never forgotten” type of boy. Sometimes someone I don’t recognise will come up to us in the street and say “hello Jacob”. It will be a carer from holiday club or maybe someone who works at the summer fundays.
In the early days I only remember the stares and double takes we would get when out and about. I clearly remember the first “tut” I heard from a sales assistant in our supermarket when Jacob was shouting. I snapped that he was disabled, ran to the next isle and rang my mum in tears. Things were a little better when he was using a wheelchair as he looked “like a real disabled kid” and people tended to look away. Now nearly 12 years old he no longer needs a chair but it’s obvious he’s not an average child. Now I hardly notice the stares. (Unless it’s a bad day) and usually what I notice is that people often try and talk to him … particularly families with children (I have to explain that he doesn’t speak!) In the early days I remember mums gently pulling their kids away, I thought out of ignorance but I now realise it was because they were worried their small, honest to the point child might say something inappropriate, embarrassing or unknowingly hurtful. Last time we were at the railway station watching trains a little boy said “Mummy that boy’s very loud” “so are you a lot of the time too” she answered. Perfect answer Mum. Yes he is different, (and loud) but that’s OK.
So are things different now? Well its 10 years on since our son started to look like a special needs child, maybe “things” have moved on. I’d like to think that we as a group are more accepted, a more usual sight. But in truth I think the biggest change is in me. The stares don’t hurt so much anymore and there are people who will unashamedly properly stare! And because I’ve come to expect this I’m more relaxed and not on my guard all the time. I can’t protect him from it. I think this change in me has made me more open to peoples’ kindness. We all live in our own bubble of a world and sometimes something makes us take a step out of it just for a while, see a different perspective. And a kind word or gesture can make a huge difference and I’m sure sometimes we all forget this.