D is for dick head

I have been quiet for a while. But today I feel compelled to speak. D is also for diagnosis and if you have had a child who is different, who struggles and has been a source of worry for you, you may have come across a short film called “A is for autism.” It was made a long time ago and explains a little of what autism means.

This week we sat in a consultant paediatrician’s office where she delivered the results of 12 months of testing. “Your son has Autistic spectrum condition.” She then paused to see f I would burst into tears. After 4 years of wondering wtf was going on with this child, it has not come as a surprise to me. I have read every book in the library, I have joined all local support groups and been on a 5 week course. Friends and family have asked me how I feel. Some days I feel blessed to have a child who views the world through a different lens. Other days it feels like a death sentence. Having fought so hard for a diagnosis, it can now not be taken back.

My brother came round recently to play Minecraft with the boys and from the kitchen, I heard one son ask “Can I make an axe?” My brother answered. The spectrum son asks “Can I shave a panda?” On days like this we laugh till we cry, and he is able to join in with the laughter. On another day, he would smash the house to pieces and cry for 20 minutes.

But I feel that very, very few people know even a tiny bit about Autism but feel compelled to give you their opinion and advice regardless. Schools are the starting point for this mis-information and 80% of teachers have had no training on it whatsoever. I say this, having been a teacher for 16 years. So I just want to give you a few pointers, just in case someone you know is dealing with a similar situation to us.

1) Don’t say the sentence “Well, we are all on the spectrum.” No we are not. And by saying that you are not showing empathy, you are demeaning the experience of someone who finds some things absolutely crippling.

2) Don’t talk to them about Rain man or ‘The curios incident of the dog in the night’. They are both works of fiction which cannot accurately represent the multitude of ways in which Autistic people experience the world. This can range from being non-verbal to being Prime minister.

3) Don’t give parenting advice. My child has not slept through the night in seven years. He wakes somewhere between 4 and 5 but it can be earlier. He does not go back to sleep. There is literally nothing I have not tried. Please don’t talk to me about sleep routines or behaviour boundaries.

4) Don’t ask what things the child struggles with and then reply with “Oh, MY child does that. ” If I tell you he cries on the way to school, I doubt it is in a neuro typical way. He cries about finding socks, about the toothpaste being too spicy, about dropping some breakfast on the table, about not finishing the programme he was watching, about being too cold, or too hot, or because it is raining. He can cry 20 times before 8:30.

5) Most of all, please don’t alienate us. There is a lot of writing about how Autistic people feel left out and lonely. But this can actually be applied to our whole family. I know there are friends who invite families round for gatherings, and I know that we are not invited. We miss out on Halloween parties, birthdays, and New years. We know we can be really challenging to deal with, but we will take ourselves off if it is becoming difficult. We want to feel part of the community too and have love to offer.

This year, I have put my career on hold slightly, so that I can fill out the millions of forms and attend the multitude of meetings in order to find some provision for my son that works. I have started my own Sensory art and Science class, design for children on the Autistic spectrum. Each week we have 9 children who vary in age from 7 to 14. We have 4 activities, all of which are optional. There is one art/ creative activity, one science build, one sensory bin activity and one cooking and eating table. These children are beginning to free themselves of the idea that they are a burden on their school class, make real meaningful friendships and learn in a relaxed and child led way. Each week I theme the sessions based on one of their “Special interests.”

Last session, I asked the class (both children and adults) to write on a post it note, one thing they like about the sessions. This is something I learnt during my Forest School training and it absolutely blew my mind. I had never done anything like this in my teaching career. I was in charge, I did not care what their thoughts were on the session. Well, I did, but it is not standard practice to ask children what they actually think! What a crazy idea?

And so, in conclusion, D is for dick head. Not for the professionals who did not spot my son’s difficulties, not for the families who ostracise us, and not for my son who can drive me to the very edge of my sanity. I am in fact the biggest dick head of them all. Because if I can be a teacher for 16 years, and not see this shit coming, it can definitely happen to anyone.

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