Something I always struggle with is “using” autism.
With a kid as severe as mine is life can be extremely overwhelming walking through the autism minefield and the temptation to milk that puppy for all it’s worth is TOO tempting at times.
I always worry I am going to be one of “those” people. You may know the type, they seek a diagnosis for real or imagined reasons and the proceed to jump up and down and demand every single piece of help/support/advice/assistance/funding then complain bitterly it’s not enough and they had to wait to long, it’s not what they wanted and damnit surely there is more!!!
I lie awake at night worry myself into sleep deprived neurosis with the thought I might become one of those assholes. Then I’d have to smack myself.
Then there’s the other side of the coin those that berate and degrade you for even seeking a diagnosis, let alone admitting it and then horrors of all horrors “using” it to “get free shit for your kid” or “coping out of your responsibility”. those assholes just need a smack.
What to do what to do??? What’s right, what’s wrong. Where can you find acceptance.
If there are folks out there that don’t want to “label” their kid then so be it, I never had that option, it’s not like you can take a look at my lad standing in the queue at the supermarket trying to get his *ahem* out of his nappy to have a wee fidget while simultaneously squealing and flapping in a circle and attempting to bend over and smell the floor and excusing him as “a bit different”. There’s no hiding that behaviour, no “oh he’s just a little sensitive”
So what to do, I couldn’t live with myself if I sucked every system dry and then flaunted it to the rooftops, there are kids out there that might need things more than my lad, but I sure as hell can’t walk these woods without a map so to speak.
I recently received an invite for the great autistic to attend the special needs kids Christmas party. It’s a huge event, sponsored by large companies and the kids get spoilt rotten, it’s a ton of fun, the jolly fat man puts in an appearance there’s food and games and entertainment out the whazoo. It’s an invite only deal as they limit the numbers. Kids in foster care and abused kids are also invited. I sent his invite back with a polite note thanking them and asking them to invite someone in his place. It wasn’t right for us to go, the whole event would be lost on the great autistic one, he’d struggle with the sensory overload and we’d only be going to get free food and toys. And that’s not cool. he doesn’t need it, he’s not sick, he’s not unhappy, he has a loving family that spoil him anyway. So I’ll pass on being a leech.
But we get free nappies from the government, more than we need sometimes so I’ll take those. They are funded by taxpayers i.e. us and provided by our local hospital board for whom awesome dadda is sub contracted to. I wish I didn’t need them I’d much rather the lad be toilet trained but so be it. As soon as we don’t need I’ll gladly give them up
We get a grand total of 12 days government funded days off a year and I bitch to one and all it’s nowhere near enough. There are kids attending the care home that appear to be extremely functional (their parents are one of “those types”) and because these kids parents leech off the system there’s less money for my lad and I’m pretty pissed about that. There isn’t anywhere or anyone else for my lad, we have one, ONE person we can trust our son with for a couple of hours at a time, she’s a young lass, my god daughter actually and she’s only been helping us for a few weeks.
Our lad is just too much for anyone else, too hyperactive, too unpredictable too difficult to communicate with, too noisy, too violent, he’s not toilet trained, he’s doesn’t eat, he can’t feed himself, so if it’s not us then it’s nothing.
So I want more damnit. I need a break more often than I can get, with other kids that need me, a high demand husband with a high demand job and my own nervous system going into open revolt against my wishes I want my share of the pie and I’ll take what little I’m given.
The government pays extra for his education, I’ve handed alot of that back as it’s a waste of money, we now teach at home via correspondence as school just isn’t our cup of tea, so I’ve saved the bean counters a few bucks there too. If I can ever get my act together I’ll apply to homeschool him and then the government can have all their money back and give it to some ones little brat with a quasi ASD label. Maybe they can hire the little darling a bodyguard and stop them belting the crap out of other kids, I dunno. I’m fairly bitter about our experience with state funded special education, can’t you tell?
So where does that leave me, selfish, a martyr, sanctimonious, tell me cause I don’t know. Actually don’t tell maybe I don’t care.
I’ll try to find my own mental comfort space for my own sake.
Bottom line is I didn’t ask for an autistic kid, it wasn’t in my game plan but it’s the hand I got dealt. So I’ll deal. For those that say “take all you can get and then ask for more” nah no thanks, not my cup of tea. Will I think less of you for doing it? Yeah probably but hell don’t let that stop ya, For those that say “don’t breed ’em if you can’t feed ’em your kid your problem” get stuffed, we work hard, hubby in a workplace doing a fairly awful friggin job that would make most people gag and I’m at home educating my son, trying to toilet train him and finding ways to make a difference by volunteering in between meltdowns and appointments cause I can’t work.
For those that say, “hell lady good on you, thanks for saving a few bucks for someone else’s kid, good on you for being sensible and sorry you can’t have more time off”. Thanks man for being the voice of reason.