If you have read some of my other blog posts (Where are the Instructions?) you will know that my son has autism. Samuel was not diagnosed until he was six but the signs were always there. I just didn’t know what the signs were! At 37 I had no experience of children, had never even held a baby until my son arrived grumpy and red-faced (the result of a C-section). My first thoughts were “OMG the baby has red hair”!
When I look back, I see how different he was even from the very beginning. The difference stands out more when I compare his behaviour with his sister. Today in the playground, Lydia was running around, interacting with her friends playing “tag” and “hot-dog” (not sure what that game is!) Samuel was quite happy on his own and “stimming”. His autism is the “high-functioning type”. But, even so behaviour can be challenging and it drains me as it is always changing. You achieve one milestone only to be faced with another challenge.
A couple of years ago, when I was feeling particularly low, my GP prescribed me antidepressants. That was a turning point for me. My son will always have autism. Therefore, I have to find a way to help myself and relying on drugs was not the answer. I decided that I was not going down that road. It may work for some people but it was not an option for me. I also found that my “bouts” of depression tended to coincide with how well Samuel was doing at school. My son is very intelligent. However, schools can find it difficult separating out behaviour issues with academic ability. It’s always been “sod’s law” that when I have wanted to talk to school about his ability, they have wanted to talk to me about his behaviour.
For two years the relationship with school progressively worsened and it resulted in me raising a formal complaint. It was not an easy decision and not one you think of taking lightly. My background in HR helped in my preparation for the meeting. I left all emotion at home on the kitchen table and focused on facts backed up with evidence. My husband summed up my “performance” as magnificent. But however, magnificent he felt I was, the whole episode was incredibly stressful for me. A few weeks later, there was a change in the school leadership team and since then the relationship with school has dramatically improved. I very much doubt my complaint had anything to do with it, but I like to think that I gave the Governors “food for thought”.
Being a Mum of a child with autism is very isolating. I feel mostly alone when I stand in the playground watching my child “stimming”. But you have to help yourself and to make an effort to get the support that you need. Although I am rather shy in social situations I did make contact with a Help Group, and spoke to someone who understood how I felt and the challenges that I faced.
And help does come in different disguises if you only take the blinkers off. Our local barbers are fantastic. It’s a mother and daughter team who have experience of challenging behaviour. They accept Samuel for who he is. I don’t have to make excuses for the way he behaves, the “stimming”, the noises that he makes or the fact that he cannot sit still for one minute. There are also the contacts that I have made through my blog and on twitter. It shows me that there is a supportive community out there. There is my hairdresser – a larger than life character with a child on the spectrum. My appointments are the opportunity to chat with another Mum who faces similar obstacles. She calls her son’s autism a “super-power” and is really becoming quite an advocate. And finally, there is the young girl who is teaching Samuel to swim and of whom I am immensely fond. When I first spoke to her about Samuel, her words were “that’s fine, I’m autistic too”. I’ve been able to have conversations with her about her own autism, about growing up and managing anger. I am old enough to be her Mum and yet she is teaching me and in her way she is showing me that autism need not be a disabler. So I thank her, she is a star and her own “super-power” makes her a wonderful young woman.