I want to begin this post by saying I love my son, stupid amounts. That kind of love where you want to just pick your child up and squeeze them every moment of every day. The kind of love that makes a fire of protective, murderous rage burn in your belly when the come home and say someone was mean to them. And the kind of love where you cannot imagine life without them, and where you know you’d just have to die if there was a reason you couldn’t be with them. Jack is my absolute everything.
It is incredibly unfortunate, however, that my fibromyalgia and anxiety can be completely incompatible with his autism.
On my best day, I’m functioning at about 80% for most of the day. These days are rare, but they mean I can keep up with him, take him out and about, walk unaided, and the anxiety I feel is just background noise. They tend to end in a 6pm bedtime for me, as the pain creeps in, and I cannot sit upright because my butt cheek begins to throb.
Those are the days I would say everything is OK. If he has a meltdown (rare) I can handle it well, physically and mentally.
There are other days though. The days where I wake up feeling as though I haven’t slept, and everything hurts already. The days that begin with a small breakfast of painkillers, anti-sickness pills, beta-blockers (my poison of choice for anxiety) and an incredibly strong cup of coffee of which I will consume many throughout the day.
On days like this, we rarely go out. It’s easier to be at home and not exerting oneself. It is absolutely essential when suffering from a condition like fibromyalgia, that you rest when you need to rest, and endeavour to pace yourself on the days where you are able to do more. Unfortunately, Autism doesn’t get the memo. Autism wants to do all the activities that you planned, and won’t accept the offer to reschedule. The energy brewing inside my tiny firecracker of a human begins to simmer, in the way Coke would if you shook the bottle. As the day goes, small things will continue to shake the bottle.
For us, that means hyperactivity, vocal stimming or tics, fidgeting, or inability to focus on the same task for more than five minutes, jumping from one thing to another, and climbing on EVERYTHING (especially people).
Before anyone asks, no, he doesn’t have Tourettes, yes, we are aware this sounds like ADD/ADHD. It’s being referred for assessment.
I am very aware how bad this is about to make me look: when Jack behaves that way, it makes me snappy and annoyed. He climbs on me, shouts HOTDOG in my face repeatedly, runs around, brings a different activity to me every few minutes and wants me to do them for/with him. All I want to do is sleep, or drink coffee, or hide under a blanket, scrolling through Reddit.
And so my ‘laziness’ and his ‘craziness’ seem to clash catastrophically. There have been days where I’ve had to sit in a different room, or go to the toilet, just to have 30 seconds to myself.
Over the years, we have found ways to get around the worst days, and we navigate them a lot better now than we did in years gone by.
For example, I often wear headphones in the house so I can listen to music, or things on YouTube. This filters out the stimming and vocalisations – and also stops my iPad making the noise in the background that Jack can find triggering.
We use ‘Time Out’ when things get too much, and he goes to his room or sits on the stairs and chills out for a while.
We have a games console in every living area in the house. This means, no matter where I go to hide, Jack can play his games, making him less likely to climb me and harass me. It also means I can sometimes escape and leave him playing, without him realising I’m gone.
You see, when we are both heightened, it is best we are not together. Not necessarily in different homes, just… apart. In different rooms, doing different activities.
Today has the potential to be one of those days. I’m exhausted; he’s dancing around the room, topless because his “chest is tooooo hot”, playing Plants vs Zombies. We can do this. We can do this. We can do this.