Right now as I glance to my left I have 4 letters on my noticeboard from various health professionals that my eldest daughter has been referred to. No one has mentioned the A word to me but all the symptoms add up and I’m fairly sure that diagnosis is likely. The referrals add up as well, covering social skills and motor skills as well as behaviour. It feels so strange and I can’t shake the feeling of failure. How did I miss this for 12 years?
I was talking to my husband earlier and he simply said “our normal is normal for us” and I think that is likely the reason. It’s a sentiment also echoed by others who have been here. Almost all the little quirks and idiosyncrasies my eldest has I share with her. For instance the other week I went into her room on my way to bed and she was climbing over her desk. I asked what she was doing and she just said “there’s a noise” I didn’t even question why she felt the need to figure out what this random (and very quiet) noise was at 11pm. I simply stood still, listened for a second, then helped her find it. Once we established what it was I said “it’s ok, it’s a safe noise” and she just went straight to bed.
I only realised afterwards that other parents may have thought it was strange or weird but I didn’t because for me it wasn’t. I get out of bed so often to find noises that my husband doesn’t even ask what I’m doing now. If there’s any comment at all it is usually “noise?” “yep” “ok”. He doesn’t try to help because he can’t, his hearing is far less sensitive than mine and mostly he can’t even heard the noise. He doesn’t judge though, he just goes with it. He knows I won’t sleep until I know the noise is “safe”. It’s our normal.
I read an article a few weeks ago about there being a big pool of parents discovering that they are likely Autistic when they are in their 30’s and 40’s and start to see the signs in their children. They do some reading, do some research and realise that actually they tick all these boxes as well. I think it is especially common with mothers as when most of us were younger Autism was thought to be a predominantly male thing. It’s only now that we realise that it just presents differently in women and we are often better at coping and masking it.
All the things that are ticking the boxes that lead to me having these letters on my desk right now apply to me as well. It’s a very strange revelation to have when you have been on this planet for over 30 years. I keep telling myself that I may have missed these signs for 12 years but my own parents missed them for 30 years and you know what? I don’t blame them, they had no idea and neither did I. It’s only with recent research and understanding about Autism that we are realising exactly what it is and how it presents.
I have adapted a lot over the years, as we all do, but some things still confuse and panic me. I still struggle with certain things that I think I should find easy and I’ve spent years beating myself up over it. With the knowledge I have I can reduce that struggle for my child. I can give her a reason why she struggles with things, I can help her to adapt and I can show her how she can still make an important contribution in this world.
As the saying goes “if you’ve met one autistic person, you’ve met one autistic person” well in this house I suspect there are at least 2 of us and together we will adjust, adapt and overcome. I hope these coming months give us more of an insight into what we are dealing with but whatever the pieces of paper say we will adjust to it and adapt to it because we won’t give up. Our normal may not be your normal but it’s just as valid and important.
I Won't Go In The Box 