Autistic parent vs. Autism leaflet

Uh… IMG_5198I had a difficult day as I received a 100+ page document about support for autistic children which pretty much confirms she’s autistic as it’s from the NHS. However I am still waiting for the letter from the doctors with the diagnosis AUTISM in clear writing instead of dancing around it with half diagnosing or diagnosing Pebbles without getting it in writing. Saying that, nine times out of ten I will get the bitchy letter asking me why I missed Pebbles appointment before I actually get the letter for the appointment.
When it first came through the door I flipped the fuck out. I had such anxiety seeing the word Autism printed across the top of the page, I hid in the bedroom underneath a blanket even though I knew it was coming.
I had a fag, stopped myself from having a shot of tequila and sat down to read through the whole document. I found there wasn’t anything I already knew even though my reaction to getting a final diagnosis was considered “normal”, even though most people get upset or angry instead of building a bed fort and hiding for about ten minutes whilst losing my shit.
The section about how people react to their child’s diagnosis varies and some people are relieved to have a diagnosis so they can get the help the child needs. I was thinking “She has enough bloody help already.” But I looked through the leaflet and realised she had all the support in place already. A lot of parents ask “Is there a cure for autism?”
I’ve always felt conflicted about this statement. On the one hand Pebble’s would start progressing at a normal rate. On the other hand this would wipe her personality surely?
I always think about how blessed I am to have such a loving daughter and how eccentric and amazing she is. Why would I want to change that? I think right now, if someone came to me with a cure for autism, I would be conflicted about giving it to her because she wouldn’t be the same little girl I gave birth to. Selfish right?
It’s kind of like saying “take this potion so you can be like us!” As a social outcast and recluse (no I’m not a murderer or maniac) I don’t see any problem with avoiding people and being passionate about certain subjects. I’m probably autistic too.
I know that she won’t start noticing differences and feeling like a social outcast until she’s older, which I will deal with when she gets there but even if she was “normal” Pebble’s is still my daughter. I know she will be just as crazy as me and get up to some legendary mischief which we will chuckle at when she opens up about it to me in her late twenties.
These statements baffle me.
“I wouldn’t wish autism on anyone”
“A person with autism won’t have a good quality of life”
Pebble’s is mid to severely autistic yet she still does things like a normal toddler. She still empties out every toy box, draw and cupboard. She may not vocally ask for god knows how many drinks before bed but she can communicate she wants a drink over and over again. She’s like a “normal” toddler but does the same things differently. If that makes any sense.
Don’t get me wrong a lot of parents struggle with their kids and say the things I previously mentioned. Which is fair enough, it’s hard to cope with a toddler without autism let alone accommodate a child with special needs.
Some days I want to smoke a joint and drink a shit ton of whiskey because Pebbles is having a bad morning with tantrum after tantrum. But I don’t I sit down with her and work out what’s going on behind those beautiful blue eyes. Usually she doesn’t want to go out because it’s peopley outside. I can’t blame her, the council really need to call in pest control for those darn people. But that’s not very often usually we are having so much fun roasting people, singing and eating we don’t notice that there are people staring.
In conclusion Pebbles is a normal toddler who has additional needs and I wouldn’t change her for anything even if it meant our lives would be easier because it wouldn’t be Pebbles. A forest has been wiped out to print information I already knew and Autism is just like sticking a ketchup label on a mayonnaise bottle.
Thank you for reading. If you are wondering why my writing style has changed I have stopped being diplomatic because I have spent so long bound up like a Chinese woman’s foot that I forgot to have fun. Just a disclaimer I don’t smoke weed, I just used that as an example for comedic affect. Even if I did, as long as I didn’t do it in front of Pebbles like drinking who cares? Not the most popular point of view but I have had so much fun the past week swimming, playing Babington, eating healthily ect. It’s nice to just stop worrying 24/7 and live!
Chow

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