I’ve shared before that, for me, one of the hardest parts of autism is the guessing games. Is his anxiety worse? Is she sick? Why is he saying his anxiety phrase on the way to Hopewell, now? Does she mean she wants to go or is hoping I’ll tell her we aren’t? Is she tired of the same lunches? Is he?
It’s exhausting. Right now, I’m trying to figure out what’s going on with Rob. He has started several really loud quirks. I need to decide if it’s anxiety or just a habit he picked up.
Their day hab moved to a smaller building right after Thanksgiving. Rob tends to be claustrophobic and I’m sure the smaller rooms (but still the same number of people) is stressful for him. The staff has changed several times and I know he spends at least a few days with a staff person he had issues with a few years ago.
He is very loud when I pick him up some days, but is it anxiety or just that he holds himself together all day and needs to release stress with me – knowing I’ll love him no matter what? Does he need a break from there?
Today, he has been chanting his fast food spiel off and on all day – the one that always ends with him yelling coffee cup as loud as he can. I just noticed that every time I hear him start (fish sandwich, McDonald’s, Coca cola) my teeth are clenched until he yells coffee cup. I’m over it.
I’ve tried distracting him. I’ve tried talking to him. Playing with him. Hugs. Deep pressure. He’s happy to do all of that, but he starts again. Really, it hasn’t been constant – but coffee cup can burst ear drums! Is he anxious? He doesn’t seem to be. Is he bored? He has lots to do, but isn’t interested in any of it. We went for a walk and he was happy to be out, but soon after we got home, he started again.
He has a communication app on his iPad and I tried using that to see if he could tell me what he needed, but we ended up talking about animals and the sounds they make (he loves doing that – and is actually quite good… just ask the people who walked by as he gobbled like a turkey at the park! 🙂 )
I tell myself that we all have days or weeks that we don’t feel like ourselves. But how long do I let this go on? He’s doing so awesome in so many things that I don’t want to change much. And maybe it isn’t anxiety, but just that he is ready for summer and weather that isn’t constantly changing. (Every time the barometer starts changing, he feels it – that would put me over the edge.) Maybe he’s just done with winter. Maybe he’s done with masks and “virus” news. I’m sure he senses how everyone around him feels and that can’t be easy, either.
So we are back to square one. Right now, autism is irritating me to no end. I want to help him, but I don’t know how to help if I don’t know what’s going on. And he can’t tell me. I’m sure he doesn’t realize how loud he is – he’s doing it for the sensory input. Now all I have to do is figure out what I can substitute for the feeling of pressure in his throat caused by the yelling! And I don’t know where to start with that.
I’m sure the long black train serenade has just become a habit for him. It’s a way to transition from place to place and I’m okay with that. We got a new car this week and that’s when he started singing on the way to Hopewell, too – but he does it even in the old car. (I am keeping the older one, too – he asked about it for days, but seems to understand now it isn’t going anywhere). The “coffee cup” thing was only first thing in the morning – a transition from bed to his day.
I’m confused. Next weekend is the time change so that will bring a whole new set of issues. Maybe…. with autism, you just never know, right? At least the full moon isn’t the same night! Thank God for small blessings!
He is quiet and happy now. I know it takes a lot of work to get him to use his communication device correctly so I’m planning on trying that again if he starts yelling again. I’m not sure he can accurately tell me if he is anxious or bored or lonely. Those are hard concepts, even for typical people. But, right now, it’s the only option I have.
I have been told to buy ear plugs or turn up the TV. But I don’t want to cover up the sound – I want to help him feel like himself. That’s the hard part and one I know every one of you completely understands. Autism doesn’t bother me – until it hurts my kids and then I just want it to go away. I just can’t imagine being “trapped” in a body that won’t let me say what I need. I’ve heard other parents say they want to be in their child’s mind for a day. Not me – I don’t think I’m strong enough to handle the things they take in stride every day.