I haven’t written about Autism in such a long time. Partly because it’s just been too personal, but partly because there’s been so much going on in regards to appointments & assessments, that we’ve needed time to get our head around things.
This is why I wanted to start writing my Autism Diaries. To talk more about the real feelings behind dealing with Autism. The ups & the downs. How it affects Archie & our family rather than just about Autism itself.
The past few months have been really hard on the four of us. With Archie starting his assessment nursery place at a Special Needs school. We knew mainstream school just wasn’t an option for him, but he’s not guaranteed a place at the same school in September, which is a worry.
The school has been amazing for him and his progress but it’s also been super stressful too. There’s been so many appointments with different specialists, from the Educational Psychologist to the Behavioural Psychologist. Speech Therapy to Paediatrician appointments. Parent assessments & dietitians, doctors appointments & hospital visits.
It’s so hard when you have to talk about the negatives so much. We need to talk about the negatives, about Archie’s issues & developmental delays because this is how it’s determined how much support he needs at school, and which school could best meet his needs.
But it’s hard work. It’s physically and emotionally draining having to go through all these appointments. Talking about your day to day life and the struggles you all face, especially when you have to do it on next to no sleep and you’re already stressed and emotional.
But it’s even harder hearing about Archie’s issues from professionals. It makes it all the more real.
Then you get asked how you’re coping.
No parent wants to say they are struggling or can’t cope. Unless you’re one of those seriously funny parenting bloggers joking about how the kids are driving you to drink or wrecking your house.
But when you’re a Special Needs Mama it’s not something you can, or want to make fun of.
It might be funny when other bloggers write about that one time their kids pee’d on the new rug. But it’s not funny when they pee on the floor, on their toys, in the toy box, all over the furniture. It doesn’t raise a laugh when you have to replace your couch because it’s smeared in poo & is pee soaked. It’s not funny because he can’t help it. He doesn’t know. It’s just sensory seeking for him.
You can tell him no, and not to do it but it doesn’t matter, he’ll still do it anyway. As soon as your back is turned, the nappy will be off. “Well don’t leave him alone” some people will say. But I have to cook food for him, I have to go to the loo myself. That minute or so your back is turned is more than enough time for chaos.
Other mums can have a little moan about their little one being up half the night, and that’s ok, but no-one wants to hear it when it’s every night. When you’re barely getting enough sleep to function.
Just thinking those words, I can’t cope, brings all the mum guilt.
My boy is amazing. He’s beautiful. I absolutely adore every single part of him. But its hard work.
Autism & Additional Needs brings so much extra work with it. It make the days and the nights so much longer harder. It all merges into one, and sometimes it can feel like you’re just getting through it, day by day. I hate moaning about how hard things are because this is our life, this is the way things are.
I’m his carer, his provider, his fighter, his advocate. I am and always will be everything he needs me to be.
But some days I am tired & I do struggle. I’m just taking each day, and night, as it comes. I have the biggest, darkest eye bags. I have about an inch worth of grey hairs poking through. I’m far too emotional & far too stressed.
But like so many parents coping, I am getting through the day, and I’m raising a little super star. So I guess I must be doing something right.