A number of times recently, I have found myself in a rather odd position. Whether I’ve been in a shop, the school playground, a toddler group, birthday party or a wedding, I just happen to have been the only mum there with a child with additional needs. Now usually this means I’m apologising every two minutes for my son’s behaviour, excusing his violence or lack of awareness of, well, quite frankly anything really. But on these occasions that hasn’t been the issue. In fact, the situation has been quite the opposite. Inevitably the topic of conversation will naturally glide to the point where I explain I’m a full time carer and that kiddo is severely autistic. And then it starts. Suddenly I find myself surrounded by people who have endless questions. And they start off something like this…
“Oh your son’s autistic?? I’ve been really worried about my son. Tell me when did you start to notice the signs??” You can actually see them take out their imaginary pen and notepad with this one. Now it’s not that I mind discussing autism, I write a blog and publish it internationally for goodness sake! But sometimes I just want to be a mum. A typical mum taking her child out and about. Maybe you talk to me about the weather, or that episode of Eastenders last week, but nope. The subject is well and truly glued to autism. In fact, it’s cemented. And it continues a little something like this…
“My son hates his baked beans touching his potato. I’ve been thinking about calling the health visitor in.”
“Whenever we take our children to a restaurant they just turn into a nightmare to deal with. I think they might be autistic.”
“But that’s a ridiculously small amount of sleep. You can’t possibly function on that.”
“How on earth does your relationship survive parenting a child with autism??”
“Is it easy to get a 1:1 for your child in school? I think my daughter needs one as she doesn’t know how to blow her nose”.
And the longer the conversation goes on, the more ridiculous the questions and statements become. Now I’m extremely lucky as this doesn’t happen with my friends who have neurotypical children. They treat me the same as anyone else. And then there is my additional needs crew. I’m guessing that how I feel in these groups is how typical parents feel at mainstream school or at toddler groups.
But when it’s just me, when I’m “that” special needs parent, my God it is just exhausting. Sometimes I find myself wanting to hide behind the kiddo when really it should be the opposite way round. I start stumbling over my words because I have answered the questions they are asking me soooooo many times my autopilot has started to fail.
Just sometimes, I long to be one of the mums. I want to talk about how much I hate that kids TV show, or where I found my bargain of a child’s coat. Perhaps I ask too much, and if I do I’m sorry. I’m really very happy to chat autism, I am. This blog is proof. But sometimes I do wish people would understand that maybe I just need a break from talking about it. And that I am so much more than just a carer. For example, did you know that I love essential oils? Or that I have a passion for art? Nope. Thought not. Because my autism carer status seems to blind anyone from the person I truly am.
So if you ever find yourself in this position, don’t be afraid to say that you’re taking a break from talking about autism today and that maybe they’d like to meet for a coffee one day instead? If they don’t, you’ll know they’re not seriously interested.
To those neurotypical parents that see into our hearts and past our responsibilities, thank you. Thank you so much. You allow us to gain access to the outside world in more ways than you can imagine. Keep up the good work people, because we need you.
Thanks for reading,