AIBU for how i feel about my sons autism.

[saffkey1]

My DS is 5 and is severely autistic.I have two younger children with my DH.AIBU to not,as everyone else suggests i should,be really ott positive about my child being autistic .I have tried,but I find alot of people say shitty things like ‘i wouldnt change a thing’ when i really would.I love my son dearly and i will support him until i die but if i could give him a tablet i would.I just worry so much about him,about his life being hard.I also get incredibly jealous of those with ‘normal’ 5 year olds who complain about them.Im not sure whether im being awful for feeling this way.

I hate the unknown though, it’s never knowing if they’ll talk, get married, what school will be best etc. It’s the unknown that annoys me the most!

@Fairylea I am sure the ehcp department used to see my number flash up on their telephone system and just groan.

What do you mean "used to"? Every year, every annual review. We haven't had our son's revised EHCP finalised following his review last April, so chances are that we'll head into the next review still with only a draft of this version. My local Council hate me. I've had three formal complaints, one all the way to the Ombudsman. I now hide my number so they cannot avoid me!

I actually got a apology from the top of the department for the way they fucked up the last annual review. And then a few days later exactly what I had been asking for in the plan!

@EggysMom

DS2 is under assessment for asd, and has been diagnosed with sensory processing disorder. He’s only 5 but already his meltdowns scare me. He is so aggressive and relentless with it, I have no idea how we are supposed to manage it when he gets bigger. He trashes his room and often hurts himself, lashes out at us, throws things and screams how much he hates us. When the storm has passed and he’s exhausted himself, he’s sobbing his little heart out and saying sorry for the things he’s broken - he has no memory of actually doing it, his apologising and upset comes when he’s seen the damage.

He sometimes seems so miserable in his own skin. He’ll insist everyone hates him, he has no friends (despite his teacher saying the opposite) and seems clueless as to how social interactions work.

I’ve had several people say that he can’t be autistic since he’s so talkative 🙄. If only they could see his meltdowns because his socks feel funny, or because there’s an itchy seam on his pants. Or when he can’t cope with crowds/noise/hand dryers. Or when he’s tired and everything is too much, and he’s put the mask on all day at school only to fall apart in the car park when I collect him.

I have to be honest and say I’d take all these difficulties away in a heartbeat if I could. Then he could get on with the business of being him without it all being so fucking hard for him.

Having an autistic child can be very stressful and wearing and there never seems to be enough support for parents who love their child but who are shredded by the day to day struggles. I was an emergency foster carer and had several placements of severely autistic children whose parent had simply reached the end of their tether. In one case the mum had tried to kill herself in another a passerby had called the police when the son was beating his mother at the bus stop. In all cases the children were loved and their mums were crucifying themselves battling with loneliness, isolation , trying to give a quality life to their other children, guilt, embarassment and often poverty into the bargain. And the positive media can somehow make things worse - as it implies that with "proper"parenting your autistic child would be an outstanding surgeon or detective. FFS as if life were not hard enough. Of course you would spare your child, your family, yourself if you could - and personally I would find it hard to understand anyone in that situation who would not. Stop beating yourself up - you're a hero.

@Aeroflotgirl youre welcome xx

Hmmm @IhateBoswell no one has ever told me ds has severe autism i just say that because his symptoms/traits are very debilitating.However I'm now from this thread going to say he has autism and learning difficulties x

@GreyBird84 my son has all those things too!

Two with asd here including one who is the same age as your son. Non verbal, sensory issues. I adore them but if I could magic away their autism I would. Because it makes life very very hard for them and us.

Of course you're not being unreasonable. I grew up with an autistic sister and I honestly find the whole 'autism is a gift' thing distasteful and offensive. It's not a gift. It's often fucking awful and it ruins lives.

ipswichwitch your DS sounds a lot like mine - he's recently been diagnosed with high-functioning ASD and ADHD, we're now wading through DLA and EHCP paperwork.

I have a fair few contacts on FB who either have ASD diagnoses or have kids with who do - it's always either the ASD people posting/sharing these memes or their non-immediate family members, but never the parents. The memes on the parent's feeds are usually about swearing, gin or exhaustion.

@Ouryve

Which part of the country are you in - I work in the Midlands in the bus/coach industry and if you were near I’m sure we’d be able to offer a ride on an empty bus for an hour or so if that would be enjoyable, to avoid worrying about disturbing the other passengers / getting snarky comments off them. Feel free to PM me if you like :)

I haven't RTFT so I'm probably repeating other posters but I just wanted to say YANBU &

I have a 2.5yrs DS who was diagnosed with ASD in October and I really try and be positive and it mostly is at this point but I find it very difficult to think about the future. Because he's so young nobody can say yet what it might be like and all the what ifs make my anxiety spiral big time.
I worry about if he will speak, how he will interact with others, how life will be for him as an adult, who will look after him should anything happen to me & OH.

It's awful and I feel so isolated as I dont know anyone else in a similar position.

Is it wrong that when my son was first diagnosed with Asperger's, I felt like I'd had a bereavement? I went through the whole grief stages.I was scared of what the future holds It was like I was a member of a club that I never asked to join. He's 16 & at college & doing brilliantly now, but all through his school years I've had to fight & fight for him & will continue to do so, but it grinds you down.

@bustraintram we're in the NE but thanks for the offer. 👌

My son has autism and learning difficulties and I think people who say things like that (and like what a few people have said in posts above) say those things because they don't really understand or just don't know what to say. I agree with you though, although I love my son if I could take those things away, I would.

Yes he is lovely, and he is funny but he'd still be lovely without the autism/LD. Maybe he wouldn't come out with random things that sometimes offend people, yet are often really inappropriately funny (80% ish of his language is echolalia but he does randomly come out with some right crackers once in a while) he'd probably control what he says.

I was told when he was little that I was lucky to have an autistic child because all people with autism are really clever (they were probably talking about savantism, which is very rare) this is not the case with my son because he has learning difficulties and thinks like a child lower primary age and in some things below that (he's 14) he can't look after himself (he can't even wash himself, not even in the bath I have to do it for him).

Another reason is because of how people react to him and look at him, it isn't one of the huge issues why I would, but it is an issue even if it isn't an issue for him because he doesn't notice ( I do, especially in cases like when 'Father Christmas' at a grotto acted like an arse a couple of years ago to him, have never been to another one since).

YANBU. My daughter was born with facial defects and I feel the same. I love her, but the defects have absolutely no positive sides to them, except to make her life harder and more painful.

I know how you feel, and you shouldn't feel guilty for feeling like this

Yanbu at all.

I have a 12 year old who has HFA and a 4 year old who is being assessed but is clearly more severe than his brother.

My 12 year-old is amazing, clever, plays several instruments and so many people think he is fine. But he walks around with a confused look on his face and I have to help him a lot with social situations. When we go to a fun day for children with disabilities he is so happy there I end up taking loads of photos of him because it's the only time he really smiles. He doesn't know when other children are his friends or making fun of him.

My 4 year-old hasn't been diagnosed with anything much yet. He doesn't sleep well at all, escapes, screams, flings himself about and eats sand, bits of plaster and anything else he can find. He has fleeting moments when I can see the little boy underneath the struggles and I wish I could see that little boy more often.

I am so relieved to read this tonight. I find my younger son's ASD to be really hard. I feel like I've ruined my older boy's childhood and that it would have been better if we'd never had DS2.

I’ve also found it has been very hard to make friends. We’re experiencing different lives and it’s very lonely.

I haven't rtft (I will go back) but this morning my 12 year old dd in floods of tears cried that she wished she had a normal family. We have all pretty much spent the whole day ducking from various missiles, the neighbours ear drums are probably all burst and the poor 6 year old has been hit and kicked and punched pretty much all day.

It is tough and relentless and right now, I absolutely hate it, we have been let down left, right and centre by services and now feel totally and utterly alone with a 10 (almost 11) year old who is pretty much tearing the family apart. I don't want to be angry towards him, I hate how I feel, but his autism just has such a huge impact on everyone, and it can be absolutely no fun for him when he gets himself into such a rage.

@Dothehappydance my ds gets into such rages too its 0 to 100 in less than a second. scary how quick my ds can fly off the handle, today it was bcos he dropped an m&m on the floor he doesn't like dropping food on the floor, he started screaming it's dirty now it's dirty now over and over again getting louder then throwing himself around and then ended up being sick bcos of the state he got himself into. Over 1 small yellow m&m peanut that accidentally fell onto the carpet. There's just no calming the situation. And it's that sort of stuff on repeat.

I genuinely worry what neighbours think bcos I can hear there kids and they are ordinary kids who make normal noise (which really doesn't bother me) but if I can hear there's then Jesus knows they can hear mine! I feel so embarrassed when I see them in the street because of the performances they have to listen too!

If I lived next door to me I would of moved a long time ago! May explain why in 3 years we've had 2 sets of neighbours on one side and the other side just moved after not living there very long I'm so conscious of the noise which I know is ridiculous in the grand old scheme of things.

We have had the same sort of day by the sounds of it

YANBU. No one wants their kids to have SEN. Doesn't stop you loving him but his life would be easier without the autism presumably. I don't think you should feel guilty for feeling that way.

@danni0509 It's tough some days isn't it. My ds just gets himself so wound up that I think he then 'forgets' what he is cross at. We took him out today to one of his favourite outdoor spaces so I think that helped, I also spent a good proportion of the day tidying his room up so hopefully he will feel a bit calmer.

It is the targetting of his younger sister that is so hard, she doesn't help though, at almost 7 she is old enough to stop doing something that annoys him when she is asked to.

Oh well, I am off to work tomorrow, I can leave the carnage behind me.