Autism has thrown up many challenges over the last 8 years. Some of them much greater than what I ever thought I’d have to face when I became a dad. There’s been challenges with communication, diet, health, toileting, and self-harming to name but a few.
Yet I never thought I’d have to deal with trying to find a way for my two sons to be able to live together. For them to actually just be able to share the same space without it causing continuous meltdowns.
Last week was my ‘blogoversary’. It’s one whole year since I published my first post on this page. Like any other anniversary, or annual occasion it can spark a time of reflection. A time where you look back thinking “where has that time gone” and “what has happened in that year?”
It’s something as a parent you encounter a lot, your babies growing up in front of your eyes, suddenly much bigger, making you feel much older. The beauty of a blog is it can work the same as a diary, and as I read back through some of the posts I could remember exactly what has happened over the last year. It also made me compare it to where we are now
Back in August 2015, we were in the middle of a really good summer. Jude and Tommy were experiencing a period where they were both happy at the same time. Dare I say it, there were even times where they were interacting together, laughing at each other as they played side by side in the paddling pool and garden. We were able to do things like go to the park, go on walks, they even took a trip to London, together.
This felt incredible.
For nearly 3 years they hadn’t spent time together like this, not time where they were both happy anyway.
Jude has never really found a way to be around other children. From the moment he could walk he would rush off into another room whenever other kids came to the house. In his eyes they were loud and unpredictable, two things that are guaranteed to make Jude stressed.
So when Tommy came along I didn’t know how he was going to react. I guess I hoped that seeing him every day he’d come to realise that Tommy was here for keeps, and he would just find a way to be around him. For the first year or so it wasn’t too much of a problem. Obviously he didn’t like it when Tommy cried, but it was easy for Jude to get away from him if he needed to.
I remember a few times where Jude would be running around and Tommy would be watching him, laughing his head off. Jude was happy too, it was as if he was playing up to Tommy’s laughter.
I felt a glimmer of hope back then. That maybe Jude’s social skills would improve being around his brother, maybe they would develop a friendship. Maybe even being around Tommy every day would help Jude develop friendships with others.
This period didn’t seem to last long. Once Jude started school and life seemed to become more and more challenging for him, Tommy soon became unbearable for him to be around. Jude was having such a hard time it only seemed fair for the both of them that they were separate as much as possible, and soon that became the routine
Then, last summer, for a 10-12 week spell things really improved, and we were able to do things with the both of them together. This came completely out of the blue, nothing apparent had changed, but Jude just seemed to relax much more around him.
Suddenly, within weeks of Jude going back to school, things started to get worse again, and they’ve not recovered since. Now we’re at a stage where they spend the vast majority of their time separate. Jude is unable to tolerate his brother for more than a few seconds.
It reached a point where Jude would wake up, hear Tommy downstairs, and begin to self-harm within minutes of starting off his day. Tommy would be kept in the kitchen, as far away from him as possible, until Jude had woken up and left for school. Even the sight of Tommy as he came down the stairs would completely unsettle him.
One of the first things Jude now does when he gets home or to his grandparents house is to explore from room to room, anxiously trying to see if his brother is there too. On finding he isn’t you can see a visible change in his demeanour.
This can become frustrating. Autism has meant there are plenty of things that we are unable to do or places we are unable to go. On top of that, not being able to do things with the both of them together can make the logistics of day-to-day life a real challenge. They both need 1-on-1 care, and they both need to be in separate places.
But, what other option is there?
Maybe we should just force Jude to be in the same room as his brother every day and watch him have meltdown after meltdown? Surely in time he would eventually get the idea that he has to be around his brother and he would learn how to cope?
Unfortunately, autism doesn’t work like that.
Imagine feeling so anxious when somebody else was around you that you would choose to jump up and down on your knees on the floor, or repeatedly slap yourself around the face. Even when that person is taken away you feel so out of control that you continue doing it for another 20 minutes. Then imagine your parents forcing you into that situation over and over every single day.
That’s not really fair on Jude. Life is challenging enough as it is for him, so why make it even more difficult?
It’s not fair on us as parents, watching him going through that, knowing that we could have prevented it.
Not only that, how is that fair on Tommy either?
Watching Jude go through that is upsetting for all involved, Tommy included. When Jude is in full meltdown mode Tommy will stick his fingers in his ears and start to scream or cry (making Jude even worse.) It’s clear how much it scares him.
Sometimes, when Jude would have a meltdown I’d find myself almost taking it out on Tommy in the heat of the moment. After all if he wasn’t so loud then Jude wouldn’t get so upset. But I know that’s just Tommy. That’s a part of his personality, part of his autism. He wasn’t trying to be naughty and purposely upset his brother, he is just being Tommy
So, we’ll have to be patient, and figure this out over time. Right now we are trying to re-integrate them slowly for very short periods, with space available for Jude to get away when he needs to. Hopefully we can create an environment where Jude doesn’t feel as stressed out by his brother, and he can still feel in control over spending time with him.
In a few weeks Tommy and Jude will be going to the same school, which is either going to make their relationship better, or make it even worse. Jude already struggles at school, now Tommy is going to be there too. Ok, they’re not going to be in the same class, but they’ll share a bus home from school together (one part of school that Jude does enjoy!)
Maybe school will be able to find a way of getting them to be able to function in the same space. Maybe a different environment, different people will help to make a difference.
I’m also realistic enough to know that things might never improve that much. Maybe Jude will never be able to be around Tommy for too long. Unfortunately, there’s lots of evidence of other siblings with autism that just can’t get along, and never do.
I’m not going to dwell on that though. Just because other siblings can’t get along doesn’t mean that will be the case for Jude and Tommy forever. They are both still so young, with so much developing and growing to do.
Looking back over the last year I can see how much they have changed. There’s been positive changes, and there’s been some steps backwards too. Yet, every day they surprise me with what they are able do and achieve.
So I’ll keep believing things will get better, and keep focusing on finding what it is that makes them happy. After all, if they’re both happy, then maybe they’ll be able to spend time together. If they can’t, then at least they’ll be happy, and that’s all that matters anyway.