Mum life: coping with a child with additional needs

*The author of this post wishes to remain anonymous. Images are stock photos and not representative of the family.

There are a few things I should say from the start: firstly, I adore my little boy. He is the absolute light of my life. His autism is part of him and I love everything about him, even the difficult bits. However, I’d be lying if I said that having a child with additional needs was a breeze. It’s not. But what is harder, is the feeling that you aren’t allowed to complain about it.

If mums get, on average, seventeen minutes for self-care, you can slice into that for us. And, even the time that we do get, well, that’s eaten into by panic and planning for the next day. You see, that’s the problem; as an autism mum, I spend my life planning and mitigating for the next issue. I live in a constant whirlwind of ‘what could trigger a meltdown?’, ‘what steps do I need to put into place?’ and ‘how are we going to deal with this, if it happens?’. I am, by nature, very flighty and excitable. I run off and travel the world on a whim, or I used to. We can’t do these things anymore; life has changed beyond recognition.

And that, right there, is the hardest part. When you have neurotypical children, you have a calm that you aren’t even aware of- because you have never even considered it. If you need to pop somewhere, you just do it. The child might be a bit cranky, but you can generally manipulate them into agreeing. Not so in my house. If you need to work but your child is off school, you can generally call on a friend to help. Maybe another parent from school is off with one of your child’s classmates. They could have a playdate. Not so in my house. And half terms? Well there are holiday clubs, right? Not so for us. I cannot, in good faith, guarantee that my child will cope, or that the staff will know what to do if something kicks off a meltdown. It probably won’t happen… but it’s not worth the stress.

So, those seventeen minutes? Where do they come from?
I’m very lucky in a lot of ways. I have an exceptional husband who recognises when I am losing my mind and steps in, making sure I get some time to go and socialise with friends to decompress. I have a superb mother (the only person I trust to look after him for longer than an hour) who gives us some space sometimes to just be ourselves for an evening. And I go to university one day a week. It seems odd that something that should be somewhat stressful is actually an outlet. But for those few hours, I am not mum. I am not dealing with the pressures. I am not anything other than the student, drinking in the information and hoping for the future. It will be bright, because I’ll keep working hard to make it that way, and hoping that somewhere along the line, it will get easier.  

What can other parents do to help?
Often, people ask me how they can help to make it easier. It’s a question that’s hard to answer, though. Although we need a break, we are fiercely protective of our children. So how can you help? Well, firstly, understand. Understand that if we suddenly cancel, there’s likely a very good reason that we probably don’t want to go into at that precise moment. We might be sitting on the floor in Tesco crying, or just completely unable to get our child to put on their shoes. Understand that our child may not play with yours like they expect. Maybe talk to your children about additional needs before meeting us that day, just in case. I spent a long time not socialising with other people and their children as it got too much explaining his behaviour sometimes. Understand that if, though rare, we lose it completely and sob on you, it’s not that we don’t love our child, it’s not that hate our life, it’s not that we are jealous of yours. It’s just that it’s got too much and we need to vent. That would be the biggest help.
Just listening.
Not judging.
Just being there for us.