Autism…… likes to give you a false sense of security and then remind you it’s there!
I massively focus on the positives, I know that’s why many of you follow our journey and I also know you are here because I keep it real.
Islas been doing so well recently, little steps but going forward all the same. Because of this we too have relaxed a little, we’ve tried new things, we’ve seen months and years of hard work pay off and it’s all amazing but autism is always lurking ready to drop you on your backside and bring you back to reality with a bump.
It’s timings impeccable.
Today we’ve gone back to the Deep. I know I said it was shocking last week and it was but my mum in law informed me Hull kids were back at school so we figured it was worth risking. Your ticket after one visit lasts all year so we’ve been three times in as many weeks.
Isla likes it, Billy likes it, it’s familiar, we have our own routine around it, it kills a few hours and it’s pretty interesting.
We went round this morning, we stopped for lunch and all was fine.
It was busy yes but probably not as busy as last week and Isla coped amazingly well last week.
We didn’t take her wheelchair, she’s too big for it anyway and last week we didn’t need it because she wanted to walk, she held our hand, she behaved.
Last week was last week, this week was different. I should have known that.
After lunch Isla just wanted to run, she wanted to run wherever she wanted, she wasn’t bothered about the crowds, she has no concept of danger, no stranger awareness, not even for a second would Isla worry about getting lost, she has no idea what that is or what that would mean.
Isla thought it was one big game, Isla stopped listening and instead just giggled and ran.
Billy was getting upset that he couldn’t calm her down or get her I walk with him.
He said to me ‘this is what I don’t like about autism, she’s running away, she doesn’t understand’.
He was of course right.
We were only ever a couple of steps behind her even when she was running, and our eyes were on her always, she was safe, she wasn’t in danger but I started to worry we were pushing our luck all the same.
I knew shouting at her to stop would make her run even faster as she thinks it’s a game, that was too risky and that’s when I knew we’d had enough and pulled the plug on the day out.
I had to keep her safe.
Autism had reared its head.
We were done.
I was reminded of the one thing I really hate about autism.
Autism puts Isla in danger, it’s my job as her mum to keep her safe but autism isn’t bothered about that.
I have to watch her like a hawk, I have to think of everything before it happens, I have to think on my feet and anticipate her next move, her every move and that’s not just mentally and physically exhausting, it’s scary, it makes you overthink, it makes you worry and it puts you on edge.
Autism isn’t bothered about that either.
Isla is safe and will be safe as long as we as her family are with her because we know her, we understand her autism and we love her so much. She will always have us by her side to keep her safe and away from danger.
I refuse to think about ten, twenty or thirty years time when Islas an adult, because it would shake me to the core, I’d worry instead of enjoying her so instead I focus on now.
Autism has positives, there are good points and there are many of them and I will continue to focus on those as always but today I was reminded that Isla has no awareness of danger, no idea of how to keep herself safe and no concept of either.
Today autism grabbed me by the shoulders and gave me a shake, just to remind me it’s there.
I see you autism, I see you!