So you’re on Facebook and a friend has posted about how much they are looking forward to the school holidays and how they cant wait to have their baby/babies home. We’ve all got that friend. At least one. I never know how to feel about those statuses. It’s usually an eclectic mix of sadness, guilt, dread and jealousy. I’m sad because I want to feel that way about the holidays. I feel guilt because I don’t feel that way about the school holidays, in fact I feel quite the opposite. Yep, I feel dread, I feel fear, I feel exhausted at the thought of it. And finally I’m jealous of all those families who get to go on holidays, enjoy days out and embrace the crowds. The crowds which inevitably mean that our family will be unable to attend any special half term events and shows. The crowds which will likely mean we will not be able to go further than the local park. The crowds which exacerbate kiddo’s autism and make life unbearable for his brain and body to handle.

The school holidays can sometimes feel like a prison sentence to me. I’m sentenced to a week/fortnight/six weeks (!) of no sleep, followed by no respite, and the challenge of keeping an extremely hyper and active child entertained and calm, whilst avoiding all noise and busy places. Hhhmmmm. I’d be lying if I said I didn’t feel a little trapped, and I don’t have any other children to entertain!

Of course the major problem for families living in the world of autism, is the huge break in routine. Those daily activities, that certain routine of going to school, gone. Just like that. Snap. Everything has changed. It doesn’t go down well. It’s like asking someone with a major hangover, who is desperately hungry, to assemble a piece of DIY furniture with a bazillion pieces and instructions in a foreign language. There’s anger, confusion, exhaustion, frustration and then finally tears when you just don’t know what to do anymore. Most likely a little bit of violence towards the furniture in there too…

For some the holidays don’t come often enough. For me, they are always lurking in the background, taunting me. Just as we settle into our term time routine, my world comes crashing down as we attempt to navigate days of no formal structure. This usually means that sleep is even more minimal too.

It’s not that I don’t enjoy being with my child. I love him so much it hurts. But physically and mentally it’s exhausting. Most of the time he can’t tell me what he wants. He can’t have duvet and film afternoons. He requires supervision every minute he is awake, and without school that is pretty exhausting.

I remember one school holiday earlier this year, kiddo was particularly hard to manage and keep safe. He was stressed and confused by the change in routine. Most of that holiday my husband (who works from home) would spend his lunch break watching kiddo so I could make myself lunch or a cuppa. I would slump into bed every night, hungry for sleep. Actually, I was starving. And then one day it happened. There was a few seconds (and I mean seconds) where both kiddo’s father and I crossed over responsibility, and he was left unattended. Smash. The fish tank was down. His feet were cut to shreds. Whilst other families were away that Easter weekend enjoying quality time and making fun memories, our memory was of an ambulance and carrying a child in full on violent meltdown through A&E. 

So far this holiday hasn’t been too bad! I’ve had some really lovely moments with my son. Not the typical moments you would expect, but some very typical kiddo moments that make you smile like a Cheshire Cat. How long will it last? Who knows. There will always be a part of me prepared for the turn in behaviour. 

Needless to say this is a little longer than a Facebook status, so I won’t be popping up on my timeline why perhaps I don’t look forward to the school holidays. But please know that if you are in the same position as us, whatever your child’s disability, you are not a bad person for not looking forward to the holidays. You will have other times with your child that you cherish, when routine is solid and respite is frequent. You will have many beautiful memories created when you least expect it. But sadly, you can’t plan for them to be in the school holidays. And that’s ok. From me to you, a huge high five to anyone struggling through this next week. You got this, and you’re amazing.

Thanks for reading,

Danielle