To hate Autism

[EnglishRose1320]

I know I might well be but today I am done with it. I am sick and tired of everyone telling me it brings so much joy, a different way of thinking, unique gifts etc. I'd happily swap my son's autism, lose the high IQ, the quirky traits, have an average child in a heartbeat because nothing is worth the aniexty, the depression, the self harming, the house desteoying, the life destroying that we have to deal with. I don't see Autism as a blessing and I don't know that I ever will.

Signed.

@expatinscotland sorry I just saw your reply, CSP is coordinated support plan (I think it’s the equivalent of EHCP, it’s what DS1 and DD have)

Pressed too soon, it’s a legal document requiring annual reconsideration to set out the child’s needs, who is going to meet them, when and how. It also includes goals for the year and how they plan to reach them.

NotReally, we have one of those, for DS. It was done in Feb 2017. We STILL don’t have a copy of the final document. I had a letter from them last week to say it is due for renewal. Great.

It's dark, it's cold, it's hailing on and off, clearly the right kind of time/weather to have a meltdown bare foot on the high Street.
Thank you for friends with just the right kind of car conveniently driving past before I got frost bite. Enough of a distraction to get back into our car but I fear I am in for a long night again.

Doesn't take much, does it op?

Hope you are OK.

He has finally gone to bed, still wide awake but at least he is finally in his room.
I'm wide awake, shattered as usual but can't switch off, big meeting at school tomorrow.

Dd does that, day from hell, meltdown before/at bedtime, take her melatonin and conks out.

Me, I'm left feeling frazzled and unable to sleep until 2 in the morning!

It's so annoying isn't it. Doesn't help that oh and I have spent the rest of the evening bickering about ds' bloody EHCP form.
Ds hasn't settled and keeps trying to leave his room.
I just want to sleep, is that really so much to ask?

I really wish there were more ABA schools in the country. It’s really frustrating that they’re all concentrated in one area....

Definitely YANBU OP. My uncle has autism, but when he was a child it didn't exist so he has never had the support he needed. I hate the fact that despite my grandparents best efforts his education suffered. He is fairly low functioning but with the right support his life could have been so much better. I hate that the doctors basically sedated him for 20+ years. I hate that he won't see anyone bar a few family members. I hate that he's a physical danger to some of us too. to everyone struggling.

fork in our state every school district has to have an ABA class available. DD starts in one tomorrow after being removed from inclusion. It's not the right move but I'm too tired to fight. DH signed the paperwork. I'm so let down by him. I wanted to know what happened. How can a child be allowed to meltdown to the point where the rest of the class had to be removed for 45mins? She has a 1-1 aide, 2 special education teachers and a gen ed teacher. I'm on my own with 3 DC and manage to keep better control of 2 ASD DC and a kamakaze toddler.

I feel ok posting this here, like i wont be judged.

On his bad days I want to just walk away. I never will, i love my ds with every breath but when he is screaming at me or throwing things at me i just want to walk away

I feel selfish for thinking that

I live life from both ends of the spectrum...DS10 is HF and DS8 is severely disabled and way at the other end. He has epilepsy and severe Learning difficulty. Only functions at 18-24 months.

Autism is an arse but .... Without the autism who would my children be? This is them...part of them and I really love them just the way they are!!! I'd have two different children if they didn't have autism do I don't think I could take it away.

I'd take away Thier pain everyday and we'll epilepsy...that's a complete and utter arse!!!! The tube feeding, the dressing, the guessing. It's fine just my boy. TBH find DS10 harder to deal with than DS8. Finding and making the right schools, fighting the system, teachers etc.....

Autism sucks but my kids Rock!

I don't hate Autism, I hate what Autism has done to our family.

Autism took our family to the brink of destruction, to the very edge of a precipice, we had no choice but to backtrack and start again at the bottom of the mountain. We are still climbing that mountain with that precipice in the distance, the climb has been slower with a better thought out route.
Who knows, maybe just maybe we will be able to avoid that precipice and we will be able to reach the summit intact.
As a family on our first attempt to climb that mountain we have been,
A) lied to
B) discriminated against
C) victimised
D) bullied
E) obstructed
All by the very people (I cannot refer to them as professionals) whose job it was to support and educate.

DS, as an individual has been,
A) lied to
B) victimised
C) discriminated against
D) bullied
E) illegally excluded
By the very same people who were supposed to be educating him.
The system stank before it was reformed, it still stinks.

for everyone.

@SukiTheDog that’s ridiculous, they have a legal requirement to renew and reconsider annually so it’ll be next month it’s due! Ours has always run smoothly, but the headteacher at DS1s School is really on the ball.

I feel selfish for thinking that

You’re not selfish, I promise you that. I’ve felt that way too. Like you I never ever would, but I’d be a liar if I said it had never crossed my mind. I wish sometimes I could walk away from my own mind too.

A few very helpful people earlier in the thread asked what they could do to help. This morning reminded me of a key one - if you see a child in meltdown fighting going into school please don’t walk into their path, please don’t make negative comments to your child or roll your eyes. If you have time maybe make eye contact with the parent to see if they need help but otherwise keep your thoughts to yourself and if you can keep out of the way!

Yup yet another School run fun day today!

@enterthedragon please don't take this as me having a dog but that's all people's reactions to autism rather than the autism itself.

I completely agree it shouldn't be like that. You shouldn't have been put through that.

@enterthedragon I thought the same as Bishop, it’s other people’s actions or inaction that make life so bloody hard.

I’m sorry you and your family are going through the mill.

Is that not often the problem though? Coping with day to day life would be so much easier if others (especially ‘professionals’) didn’t put so many extra barriers in the way and make life so much complicated

@Sirzy yes! I had feck all support with DS1, it felt like battling day in day out for 3 years and nearly led to me having a complete mental breakdown. (Nursery were arseholes and blocked me every step of the way)
Yet with DD and DS2 it’s completely different and it’s been so much easier with the right support in place.

It would be interesting to hear what the adult autistic people on this thread think of ABA. I have one adult autistic friend who is very against it, so would like to know if her feelings are common to other autistic adults.

But if you don't want to say, that's fine too.

@ThumbWitchesAbroad to me it seems abusive. Only my opinion.

It makes me literally laugh at people when they ask what ‘support’ we have/had for DS1. He’s gone to live with his dad as we couldn’t cope anymore - what ‘support’ do you think we got?!
Then it becomes ‘have you tried x service?’ No, no we just gave up. Yes we’ve tried absolutely everything including referring ourselves to SS (which broke me). They still weren’t interested. We were pretty much told, not directly, that unless we were abusing DS, or he was abusing our other DC physically, we were on our own. Once a Dr told me to ask a charity to help. There’s none of that either!!

I know it’s frowned upon but like others here, I’ve spent many a night crying and despising myself for wishing he wasn’t high functioning. My SIL didn’t have to fight at all for her DD - she’s non verbal so they got everything they needed without hassle. I, on the other hand, have lost my chance to be a full time parent to my boy. It’s just awful.