Holidays have arrived and we limped to the finish line. The last week was a hard one, with a few weeks of little sleep pressing down on our shoulders, it seemed to go on forever. But we made it. In tact and with only a few small scars to show for it.
The lack of sleep, it’s a killer. It compounds, day on day, week on week, until I feel like I’m wading through soup to just make it through the hours until I can return to bed. Habits form too, so even on the nights where we finally get Poss down, I find myself still up at 1am doing something ridiculous, like updating the software on my laptop.
We reached breaking point earlier in the week and took a emergency appointment at the paediatrician. This doctor has been seeing Poss now for almost five years. Half her life. She knows the ins and outs of every aspect of our Autism journey; has seen me at my very worst and advocated for Poss at hers.
She checked for some basic health things and asked a dozen questions in quick succession while peering over the top of her glasses. It sounds cold, but somehow she always manages to come across as patient, calm and most of all, understanding. She then declared we needed to increase the Melatonin as a starting point, and gave us some ideas around changing up the bedtime routine.
As she wisely stated, we have been on the same dose of Melatonin now for almost five years, and the routine has stayed much the same as well. Because if it’s not broke, why fix it? And also, let’s be honest, kids on the spectrum aren’t huge fans of change – so we try and keep it to a minimum.
But she’s now ten. The things she needed when she was five, aren’t the things she needs at ten. As much as the routine has stayed constant, her age, her maturity and her physical needs have not.
Bastards. It’s hard enough to find and establish something that works without having to think that Poss is going to keep growing up and needing something different. Something more, something less, something else.
These things are inevitable I guess. More and more we’ve recently noticed that she’s growing up; the teen years are weighing down on us, and the things we used to worry about are falling back while other things are coming to the front.
Autism is not a static condition. Like life for anyone, some days are harder than others, some issues bigger and others smaller depending on what else is going on.
However, on some days, the not so good days, the hard days, the infinite nature of the challenges ahead for Poss seem simply overwhelming and exhausting.
The never-endingness stretches ahead into the horizon and I worry who will protect her, guide her, help her as she gets older and these things are still there, shape-shifting and taking on different forms.
Other days, the good days, the happy days, the days where we’ve slept, the opportunities are endless and exciting.
The world is her oyster, shiny and bright, open and ready for the picking. I know she’ll do well in whatever direction she steers her boat, and I’ll be proudly clapping her on from the sidelines.
I’m trying to focus on those days, and leave the others where they fall.