Autism is actually f&£king exhausting

We’re all tired, I get it, kids are hard work, life is hard work…..true fact !
But if there was ever a thing that was truly overlooked its how hard it really is to be the parent of an autistic child. interchange Autistic with any disability.
sleep? well, my elder son with autism is 18 and my younger one is 9 ….they aren’t good sleepers, by that I don’t mean they go to bed a bit late, I mean without melatonin tablets Ollie will be awake till long after midnight with his billion questions, every night, when he was younger rather than ask questions all night he would rage and scream for hours at bedtime, the elder one is largely nocturnal, so he is up all night, wandering around, having his tv too loud, cooking,popping into my room at random points in the night to chat…oh and did I mention that Ollie is nine, he’s only been in his own bed for 3 months, next to my bed, as i write this he’s in my bed again. sleep…..what even is that?

People moan about their kids getting under their feet, what ? I would give anything to have my boys spend more time with me , Ollie needs a lot of alone time every day, and the elder one….well he’s usually asleep all day, somedays I could go all day without seeing them, if it wasn’t for food and drink i’d not see Ollie on some days.

fussy kids…pah! Ive got fussy kids I’ve also got Ollie who goes through long phases of not eating incase there is a hair on his food or its been contaminated, even periods where he will only drink build up …the elder one has only around 3-4 meals he will eat, if we don’t have them he can go one of two ways, bullistic or throw an almighty sulk

I’d give anything for my boys to want to go out , playgrounds are too noisy and too much potential for confrontation, town is a no no , too many people, even a walk on the common is unlikely because of flying bugs . If by some miracle we do get out its usually so stressful I wish We hadn’t.

hygiene ? put it this way , showering, hair washing, tooth brushing, ongoing battles I barely win.

The tv causes problems as one can only watch tv with subtitles as he cant concentrate without them, one hates subtitles because

they arent even spelt right most of the time.

Any kind of doctors appointment takes weeks to plan and usually ends in me going alone, in fact any plans to go anywhere take weeks to,plan and usually end in me going alone.

Family games are a no-no we played frustration this week , I was foolish really to think an autistic could play frustration.

In our house there is a lot of throwing things, banging things, shouting ( from them not me) a simultaneous tantrum with an 18 and 9 year old is not fun.

This is just the small stuff, I’ve spent over ten years now fighting CAMHS for help, I even made an official complaint on the grounds that

every professional involved in my sons case failed him at every step of the way

, I received an apology and an admission from our consultant psychiatrist that they just have no money and no staff .
this makes me livid but its a whole other blog post
After the complaint elder son was diagnosed ten years after I begun fighting for it. too late , he’s had no education, he is housebound he still recieves no help , i fight for that boy every single heart breaking day , then Ollie, well he was diagnosed reasonably fast ( after my complaint) but him and I went to the depths of hell with his old school while i begged for help.
I was the the one soothing and calming my stressed broken ( by the school) little boy, i had to fight to find him a real asd placement and I will continue fighting to ensure his education is right for him, while fighting for the non existent help for my 18 year old.

For a year when
Ollie was two we had to travel to school by bus, every day ,the whole family, Ollie would throw himself on the floor of the bus, screaming , screeching, lashing out , not letting me hold him , all the way there …and back…I got the stares back then and I still get them now when Ollie or J become stressed , I’m fighting ignorance every day I’m fighting for acceptance and for support and its exhausting .
Its all exhausting and relentless…..

As well as being exhausting its incredibly isolating, I don’t see mums at the school gate anymore, I don’t get invited anywhere because Ollie doesn’t go anywhere, nobody phones, texts or messages to ask how Im doing , probably through fear that I might actually tell them, friends just become people you used to know .

I don’t actually know how to wrap this post up …..so I’m just going to say

don’t tell me you’re tired because I might just poke you in the eye and then make you read this blog post over and over till you get it

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3 Comments

  1. I have autistic children that I can go places with (albeit with planning) and I’m exhausted so I can’t begin to imagine just how tiring your average day is. Wish I could do more than sympathise x x

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