I am not the same person I was 10 years ago. Before the word ‘autism’ became a reality in my house.
10 years ago my eldest son was diagnosed with autism.
10 years ago my heart broke in two.
10 years ago I had a very steep learning curve and…
10 years ago a whole new world opened up to me; my life changed for the better. I just didn’t know that at that precise moment in time when the paediatrician uttered the words “ Your son has Autistic Spectrum Disorder “…
I nearly fell off my chair.
It shouldn’t have come as a shock. The signs were all there from when he was a baby.
He lined everything up. Sounds were painful to him. He could not get on a train that had windows that looked slightly different to what he was used to. Certain materials were a no no. There were so many signs and perhaps I was in denial but all I saw was my intelligent, unique son.
I didn’t see a ‘problem’.
As a working single mum I would struggle to get him to his childcare before tackling the daily commute into London. I didn’t know what autism was. Sure I’d heard about it. I’d seen the film ‘ Rain Man’ and my son was nothing like that!
But what would I know? All my friends were city workers, civil servants, teachers. None of them had children. I had nothing to compare him to.
So that day at the hospital I burst into tears. Alone and scared . I didn’t know what it meant . A million questions ran through my mind at once!
There was nothing ‘ wrong’ with my boy surely?
And so it went on. The denial. The upset. The tick list of things that he would ‘ never do’ that I now crossed off in my mind.
Little did I know that the list of things I wanted for my son were just preconceived ideas based on my own fuzzy image of how I wanted things to be .
Playing Football, birthday parties, friends coming over, even making friends: all of these things I now crossed off in my head.
All I could see was what I thought autism would take away from him. I didn’t see what it gave him.
Yes he wasn’t interested in football! But guess what? He loved space!! And he could tell you everything about the Big Bang theory and list every single Thomas the Tank Engine train in alphabetical order.
Yes he struggled with friends but he had two. Ok they played alongside him (not with) most of the time but mostly he was happy in his own world. I was just an outsider looking in. Judging by my own standards. How did I know what he enjoyed?
After a while I started to see my son again.
For the first few months every funny little quirk he had, I looked at in a different analytical light. But when I accepted that autism was a part of him and what made him so funny and unique: I saw him again. I saw him for who he was.
The main problem I had with autism was not actually the autism.
Ok the sleepless nights and the meltdowns are very tiring. But when a lovely support worker at the school put me in touch with other parents and organisations that taught me about autism and how to prevent meltdowns and understand I changed my strategy. And it helped. I realised that he couldn’t change so I had to. Slowly but surely I made breakthroughs.
I embedded visual supports, countdowns and prepared him for changes, I explained the what and the whys of the world to him and his anxious, active little mind would settle.
The main problem with autism for me came from a lack of understanding with the rest of the world.
The dagger looks I would get from other parents.
The stares in the shop if he got over stimulated and would lie on the floor.
The school teacher who didn’t understand but wanted to.
And so I realised the key to unlocking my son’s potential and creating a happy and understanding world for him was to forge it and to carve it out by myself.
Explain to the people in the shop.
Talk to the other mums and explain to them too.
Be upfront with the teacher about the difficulties at home.
Look for solutions together.
I am not going to say this was a miracle solution but it helped. I had to swallow my pride and calm my own anxiety and lump it. Something I had never done before. But I had to do it for him. He came first now. Not me.
And it paid off. The parents would smile. They’d show understanding towards my son and that filtered down to their children. I found a group of friends who would listen to me and in the end the teacher and I would work together and put on a united front to my little boy.
So when I went into battle over school placements and navigating the very complex system of obtaining a suitable education for my son, it became easier to do because I found a tribe of supportive mums and autism mums. And we kept each other sane. And picked each other up.
When my third child presented with a more severe form of autism I was calm. I’d already fought battles both outside and inside my head.
I’d already found a way to celebrate the small tiny things.
I knew the system inside out and I knew how to get support right away.
I knew that comparing him to neurotypical children would only break my heart so I accepted instantly that he is who he is.
And do you know who helped me put it into perspective? My eldest autistic child.
He was just 11 when told him that his youngest brother Finley had been diagnosed with autism and global development delay.
His response amazed me then and still does now 2 and a half years later:
“ Mummy don’t worry!!! Everyone travels on different roads. We all reach the same place in the end. Most people take the motorway. I take the A roads mostly. But Finley is just off roading. We all get to the same place and he will get there too so don’t worry”
Well what could I say to that?
So! No, I am not the same person I was 10 years ago.
I am a much more positive person these days. Autism has taught me that the little things matter . It has taught me to think outside the box and look at everything with childish curiosity. It has taught me what is really important in life and I couldn’t be prouder to be an autism Mum.
The Avenger 