When we first started along this long and bumpy autism road, people used to say to me “you just need a diagnosis, then you will feel better”. I actually got what they meant, a diagnosis gives you a defined condition, a reason for behaviour etc. But the diagnosis was so so long away. I couldn’t wait that long. I needed to try and accept what was happening now and it’s implications on the future. But acceptance is not that easy. There’s a lot of soul searching that has to go on before you can accept your lot in this autism world. There’s also a huge amount of research and reading around your child’s disability or condition. This is the point where you read the same style article over and over again, making sure that they all detail the same symptoms and the same behaviours. Because if they don’t, well, it could be something else couldn’t it?
So down the checklist of autism symptoms I went. I read a plethora of articles. “The top ten signs your child has autism”. “So you think you’re child is autistic?”. The articles went on and on and on. I didn’t need to read any of them because I already knew. Yet I needed to read every single one of them because I wanted to be wrong. There had to be a clause, just one tiny thing. I toyed with the idea that kiddo gave eye contact for a while. But then I owned up to myself and admitted that it was absolutely ludicrous to base a whole diagnosis (or non diagnosis) on one aspect, in this case eye contact.
And then the day came. Not the diagnosis day, for that was still at least 9 months off. It was the day I had finally read enough articles. The tears came, in fact I’m fairly sure I screamed and howled as though I was in pain. And I was. Horrendous excruciating emotional pain. Because that was the moment my path in life changed. Not the day of the diagnosis. That moment right there. And it was the best thing I ever did.
Kiddo wasn’t here, I can’t remember where he was, so I took the opportunity to cry. And cry. And cry. The visions of my life to be were destroyed. I grieved the life I wouldn’t have. I let the anger run free. Because every parent has the right to be so angry for their child when life hands them a curveball, one you know will be a huge challenge. This isn’t the first time that my life has taken a very unsuspected turn, and I knew that if I was to have the space in my brain to deal with it, I’d have to let the emotion out first. Make way for the logic and willpower please! For they will become your best friends.
When I had finished this huge catharsis, I felt like a different person. It was like I suddenly woke up and realised that life was trying to take me on, again. Seriously? How dare it. How bloody dare it. And my inner mummy lion awoke. Yep, the beast was awake and ready to fight. My child was not going to be defeated by autism. We as a family were going to embrace it and celebrate all the beautiful things it brings to a person. Such a unique perspective on life. And my husband and I were going to learn.
When the day came for his diagnosis I listened to the words “severe autism” and “profound communication difficulties” and I didn’t even shed a tear. I didn’t need to. I had cried for this moment 9 months ago. I was way ahead of the NHS. I felt relieved that I finally had a piece of paper which meant I could apply for new support, schools and finance. Remember, logic and willpower! They fill my brain most days.
Now my heart is back up the top, high and bouncy most of the time. It has days where it dips, it dives, it full on dive bombs actually. But it always comes back up. There’s a reason the tag line if this blog is “the rollercoaster ride”. It truly is the most terrifying and exhilarating ride I have ever been on. Sure, id like a break once in a while, but I like to think that whatever goes down, must come back up… I prefer it that way round 😉
Thanks for reading,