We are constantly being told that autism is a superpower and I am a firm believer in ‘what works for you’, this however does not work for us as a family. Yes we believe autism has some benefits and yes our wonderful children would not be who they are today without their autism, but we do not believe it is their superpower. It is a hard, gruelling, neurological condition that if it was allowed to would ruin every tiny aspect of their life.
We as parents, carers and family have to work very hard to make sure this doesn’t happen.
So much of today’s world is about trying to put a positive spin on autism so that our children are more widely accepted in a neurotypical world, but by doing so we are hiding away the real struggles our children, our families and us as parents go through every day. We are hiding the true face of autism to make our children fit into a world that will never understand them. We are making a world accept and adapt to our children without ever really understanding them because we are not being true to them.
I for one have up to this point hidden my children’s struggles, even to family. When asked if they are OK? How are they doing in school? I have responded with a generic “Yeah they are good, thank you”. There seems to be a certain amount of shame surrounding autistic meltdowns and I know I tried to cover up the fact they were happening for a while. I didn’t tell family, I hid the bruises and the daily struggles. Of course none of this was helped by school effectively accusing me of making it all up. I think violence, meltdowns and autism has become somewhat of a taboo subject, much like being gay or talking about mental health used to be. It was ok to be, or have, just don’t talk about it. We now know shouting it from the roof tops is good for us. It promotes acceptance. Well it’s the same for autism and until we normalise the darker side of it, the neurotypical can never fully prepare and integrate our babies. We are still trying to cram our square children through round holes. It just shaves a little of their corners off every time we do it.
Crying in the bathrooms, come on mommas and dads we all do it and we need to stop denying it. Raising our babies is hard. Raising neurotypical babies is hard. Raising babies that cannot cope with noise, touch, emotion is especially hard. Having your child kick ten tonnes of poop out of you one minute and then cry because they don’t know why they did it, or worse, don’t care is hard and we can only take so much before off we go to the bathroom to cry. It makes us feel better. It lets us release all that stress and allows us to reset ready for the next battle, But we shouldn’t be hiding away and no that doesn’t mean we should be coming out of the bathroom, that’s our moment! However, we should be telling people how hard we are having it right now and that maybe just maybe we need a little more support, even if that’s just a coffee and a chat.
The constant rounds of arguments, arguments between you and your partner, arguments with your family, arguments with your children, arguments with the school, doctors, authorities and the worst of all, the arguments with yourself because those are the ones you will never win.
Never feeling like you are enough or doing enough. The constant self doubt and then not realising you needed help until it is too late.
It all has an effect on our mental health and you think you can cope and must stay quiet because us special needs parents just need to get on with it, but then one day we find ourselves crying in the bathroom unable to stop, or worse.
There are a few too many of us that have had thoughts of suicide but have been too scared to say anything, through fear of judgement, failure, or fear of losing our children through not being enough. So instead of seeking help we have just carried on suffering quietly. I was lucky, I spoke to my family, got the professional help I needed and was stronger for my children because of it (it wasn’t easy), many aren’t.
Then there is our children’s mental health. Autism, anxiety and mental health all go hand in hand. I know from our experience (and everybody’s will be different as everybody’s autism is specific to them) Samantha’s anxiety is so extreme that from the age of eight she has spoken about taking her own life and Riley from the age of six has spoken about it. It is a hard topic to discuss but if these things are not spoken about the world can not prepare for our babies.
We will be open and honest about our autism experiences on this blog, as much as we can whilst still respecting our children’s privacy. Bruises, tears in the bathroom and all, so if nothing else you know you are not out there alone.
