This afternoon we went to the local indoor trampolining centre. Loads of fun for every kid in the world. Every kid loves this stuff. Bouncing around on trampolines with walls made of trampolines and foam pits to jump into and all kinds of fun. For every kid in the world.
Except for kids on the autism spectrum.
For kids with an ASD it’s a sensory overload. Noises, smells, too many people. Too much activity, too much going on, too much distraction, too much to take in.
My daughter loves it here. She wanted her brother to come and have fun with her. She is 13. He is 14. There are lots of teenagers here. There are lots of little kids as well.
Last night they were jumping on our trampoline at home. They were having a ball. One of those times as a parent when you just sit back and watch your kids having fun together, and you feel as close to perfect happiness as you can imagine.
They decided they would do the indoor trampolining centre today. The trouble started long before we got there. I should have called it off. But sometimes it’s all OK. Sometimes if I persevere, with patience, but persistence, it works out OK. My son is just a kid after all. He wants to have fun, just like all the other kids. He wants friends, he wants to play, just like everyone else.
But he is not like everyone else. He is not like the other kids. He has Asperger’s Syndrome. An autism spectrum disorder.
Most people think Asperger’s is just code for naughty brat, or the same as ADHD. It’s not. It’s nothing like that. Perhaps to the ignorant and uneducated.
There are a lot of those people around. As many people tell me how to ‘cure’ autism and solve my son’s behavioural problems as tell me how to cure my arthritis.
I tend to just smile and nod, because people are usually being superior dickheads, not so subtly telling me that it’s my parenting that’s at fault. ‘Bit of discipline is all it takes’. ‘If he was my kid he would be grounded for a month’. ‘You should take his phone away’.
Thanks for that. Those ideas will certainly get at the root cause of the problem and deal with the neurological deficits and sensory processing disorder that he suffers from.
My daughter talked my son into going to the trampolining centre. Half an hour before we were to leave, I told them to get ready, get into comfy trampolining gear.
He exploded. That’s the way it most often happens. Everything seems fine, but something is brewing in his head. Sometimes there is warning, most often there is not.
He snaps so easily. Over the smallest things. It’s the result of a bunch of things that have been building all day, all week maybe. And then boom. And living with a child on the spectrum, you never know when he is about to go boom.
Then he called out to me saying he needed help. Then he threw himself on the bed and sobbed.
My daughter watched on. She’s seen all of this hundreds of times before. She tries to cheer him up and often gets abused for her trouble. I tell her to just leave him alone. I tell her I know that she is trying to help. I tell her I know she loves him and she wants to help him to be happy. I tell her I’m proud of her, and how much she cares for others. I tell her to leave.
He sobbed and sobbed for about ten minutes. When he’s like this he tries to crawl into my lap, like a five year old and clings to me for dear life. It’s unbearable to experience. I can feel his despair, the depths of his misery. His sadness is palpable. Another entity in the room. I stroke his hair and let him cry as long as it takes.
Then he suddenly pulled himself together. Apologised to my daughter and started getting changed to go to the trampolining centre.
Snap, just like that. Wiped his eyes. Decided he was going to do it. Smiled.
My daughter was thrilled. She got all excited and gave him a huge hug and started talking about all the fun things they would do. He smiled broadly.
We’d been there less than five minutes before my son refused to go on the trampolines. There were too many people. It was too loud. It was too bright. He started to lose it again. I’m familiar with this stuff. I calmed him. They tried again. Five minutes later they were back. My son refusing to go anywhere near the trampolines EVER again.
He was totally overwhelmed. The loud pop music. The number of kids, laughing and playing. The noise. The other kids jostling him. The smells. The food, the coffee, the people, the sweat. The lights were harsh and bright. It’s cold in there.
It was all too much for him to cope with. He started yelling that he was going home.
I told him to stay put. My daughter then refused to jump either. Saying it was no fun on her own.
Fair enough. All she wanted to do was have some fun with her brother. Like normal kids.
But he’s not a normal kid. He wasn’t being naughty or pig headed. He was overwhelmed by the sensory experience of the place. He couldn’t handle it. And he responded by lashing out in anger at me and at my daughter.
She started to cry and I thought of all the things she has missed out on in her life because of her brother’s autism. There are so many things we couldn’t do. We still can’t do. Simple things. We could never go out to dinner. Or even lunch. My son would melt down. Our holidays were always about keeping him content. He doesn’t like new places, so we always holidayed in the same places. We had to take so many things from home to keep him comfortable, familiar things. Toys, clothes, pillows, food. He only eats about four foods at any one time. When a new food makes it onto the ‘acceptable’ list, something else drops off.
I can’t even explain all the little ways that life with my son is so incredibly hard. And people don’t get it. They just ‘me too’ me.
‘Yes, my child is like that too.’
No your child is not. Your child the fussy eater is not like my child who has autism. Your child who just hit my child is not like my child who has autism. Your child who doesn’t want to go to school today is not like my child with autism. Your child who is being naughty and throwing a tantrum because they want a can of coke is NOT like my child who has autism.
As people talk and tell me all about how their child is just like mine, I just let them talk. They don’t realise that their own words are showing that their child is nothing like mine. Because they know nothing about autism spectrum disorders and what is really going on when my son has a meltdown.
Clue: It’s not about the can of coke. It’s never about the can of coke.
My daughter decided she wanted to go home. Who can blame her?
She yelled at him that he ruins everything.
And it’s true. He does. I love my son more than life itself (and my daughter). But it’s true. He ruins everything. Simple little things that other families can do without a thought, are impossible for us. Have always been impossible for us. Because of his autism.
My son’s autism was a significant factor in my marriage break down. My ex-husband didn’t believe in autism. Asperger’s. Made up stuff. He thought it was all down to bad parenting. And seeing as I did all the parenting and he was never around, that meant it was my parenting. My fault.
The answer? More discipline. I just needed to be tougher with him.
Which is what most people tell me. And if you’re thinking right now, so what did she do to punish him?
You don’t punish a child who has a disability or a disease. Punishing a child with autism because he has a sensory processing disorder and can’t manage his environment nor regulate his emotions is the same as punishing a diabetic child because they can’t regulate their blood glucose levels.
He was NOT being a nasty kid. He did not WANT to behave the way he was behaving. He was more unhappy and in more distress than anyone else around him. He doesn’t enjoy having meltdowns. So punishment doesn’t really work. He’s not choosing that behaviour.
My daughter cried all the way home. My son cried all the way home. I cried when I knew they were safe and I was alone.
She went to her room. He went to his room. I checked that he was safe first. Sometimes he wraps cords around his neck and threatens to hang himself because he feels so guilty about ruining whatever it is that we just tried to do.
He knows. He feels terrible. He IS sorry. But he can’t control it.
So first I have to check that he is safe. He was crying on the bed.
So I checked on my daughter. She was bawling. She said she hates him. That he ruins everything. That it’s not fair. And it’s not. Having a sibling with a disability is not a lot of fun. Although it seems like she’s the ‘good’ child, so much more attention has always been directed at her brother. Because it needed to be that way. To keep him safe. To keep him calm. To keep him happy. To keep him under control.
She asked me if I could take her on a holiday. Without her brother. She just wants some time to feel normal. To do normal things. And not have to work so hard to just have a little bit of fun. Go out for ice cream or a burger without it having to be perfect or having three meltdowns on the way.
I promised her I would make it happen. I don’t know exactly how I’m going to do that. But I have to.
Today has been a rough physical day for me. It started well, I went to my yoga/pilates class. It was hard work, but it did me good. I saw a friend, enjoyed a chat, and headed home feeling good. Looking forward to a good day.
Two hours later the fatigue hit. The familiar malar rash spread across my face and I just felt…sick. Can’t really explain it better. Just sick. Nauseous, exhausted, weak.
And then the pain. The bad pain. In most of my joints.
I had promised the kids we would go to the trampolining centre. So I took a lot of oxycodone and I prepared myself. It’s only a ten minute drive away. And we were only going for an hour.
As it happened we were there for less than 15 minutes. Ironic. I should have just stayed on the couch and let them down. It would have been better for all of us.