As I ran my son his bath, at six o’clock as I always do, he put his arm around me and I took this photo.
He has no idea how I would have quite liked to have been somewhere else at that moment, just for once.
A small part of me wanted to be an adult and have freedom. Nothing hugely special just a parent council meeting at his sister’s school.
Evening things are impossible for me though and I am not alone.
Parenting a child, or children, with addiction needs comes with sacrifices. For many that means a lifestyle where every night is a night in.
Baby sitters and child minders don’t happen in my world. The weight of responsibility that comes with having two children with autism who rely on a steadfast routine that involves me doing everything can be heavy some nights, but they are worth it.
It’s just not easy to explain this to others. I think many feel I use my children’s disabilities as an excuse for not going to things at night but that isn’t the case at all.
I would love to have the freedom to attend events, meetings, get togethers and family parties but it isn’t possible.
When I say every night is a night in I mean EVERY night.
I have tried to change things. I went out a few weeks ago to a Halloween party at my daughter’s school with her. I was out for one and a half hours and I was just five minutes from home.
My son had a visual schedule, was left with someone who completed understood and was capable of meeting his needs but yet the whole evening was a disaster.
He cried, he lashed out, he caused damage because he was unable to understand where I was. I once nipped out to the local supermarket for bread and my daughter had a panic attack so bad she was struggling to breathe.
My children are unable to cope when I go out so it is better for everyone that I stay home.
There may come a day when that changes but until then their needs come before my wants.
So, at 6pm the bath gets run. It’s what we do here. Prior to that it’s dinner and homework. It’s the house of routine because that’s what works.
My children are not controlling me: they have anxiety, autism, and in my son’s case epilepsy. My son trusts me to bathe him, give him medication and read his bedtime story (the same one every night).
It’s a privilege and honour to be the one doing that for him.
My daughter wants to talk to me about her worries and read Enid Blyton together. They need that consistency and reassurance every night.
This is much more than mundane everyday life, this is precious years of bonding that I will never be able to get back again.
So, while part of me misses that adult time, those PTA meetings, family get togethers, Christmas parties, birthday drinks and so forth I know that I made the right choice by saying no.
I care about other people but I have two disabled children who need me.
Every night is a night in and I don’t know when or if that will ever change. I know I may be letting other people down and that’s hard. But it’s harder still to see my children struggle.
They are worth it.
That hug makes up for every sacrifice I’ll ever need to make.