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.

@Notthecarwashagain

I drop him off near his school so he has a small piece of independence to walk in by himself, and watched him recently being followed in by a group of other boys, one copying his (very distinctive) walk.
He was unaware thankfully, but it genuinely hurts my heart to see how vulnerable he looks sometimes.

Bless him. X

Nope yanbu, I have two with autism and if I could take the autism away I would.
I hate it when friends put on my fb about famous people who have asd and how well they have done.
I know they mean well but one of my boys will never live independently.

Am in your situation and yes the dark days are really awful. Sometimes i think that those who post all the happy stuff about asd are those who have hfa/ have kids with hfa. After all, they are the people who get to access a bit of normality

@saffkey1

How you feel is how so many of us feel. My DC with autism is older than yours and impacted severely as well. Love is no different, it's fierce and wonderful and that's a good thing! But almost everything else is. We deal with not being able to go to communicate events as a family, having to miss siblings school plays (one is very active in drama club and has never been able to have the full family there - also I have to stay with sibling as no one can baby-sit), a severe restriction on days out and travel, special days like Christmas and Easter are often accompanied by severe meltdowns due to the change in routine. I watch friends children 1/3 my DC's age doing things that my child can't. The grief is still there. And as everyone gets older the worry about what will happen in the future as parents age is profound.

People don't get it, a friend recently criticized a family we both know with a son with autism in his 20's who were searching for live in accommodation for people with disabilities. This same friend's children are away at Uni. She was clueless as to the pain the parents are in, one parent with a life threatening condition. Trying to figure out what to do because there will be no Uni or moving out in the traditional way but they will age and possibly not outlive him.

It's hard. I won't lie. We are in a hard space right now dealing with aggression, sleep disturbances and more. It's like the elephant in the room sometimes, your child's life so restricted, with so much less possibilities. Acceptance and love doesn't mean you don't wish you could change it. My child's life is so hard. So full of angst. I would give my right arm to change things.

As for siblings we heard from our developmental Pediatrician that often siblings struggle. Mine are older and would say it single handedly is the hardest part of their childhood. It's impacted so much of our lives and the one closest in age and more involved (by choice) said she understands why families burn out and can't do it...

Having said all that the love is so deep, so profound. And that carries us through the very very hard.

You aren't being unreasonable, how you feel is so normal!

I would take away the things that make my son unhappy.
Over the years I have learnt to give less and less of a fuck what randoms I meet out and about think.
I also think there is a lot that society could do to make people like my son's lives easier but society chooses not to.

I’m no good at tagging but my heart goes out to the lad walking to school on his own and his mums observations about the boys behind him.

This post a bit of a pity party as I’ve had a really awful Christmas break with ds as I’m sure many will relate to Christmas is a difficult time for children with autism... but something I’m feeling really sad about is that recently the council gave us a short breaks budget to access stuff like the zoo, cinema, disabled ski lessons or horse riding lessons etc, which is amazing but ds autism is so severe the mere mention of any of these activities causes a huge anxiety induced meltdown. He doesn’t want to do anything except be at home playing on his iPad. We have managed a cinema trip (add specific) but I just think I have this huge budget prepaid card sitting there and we just can’t use it. That’s the reality of our type of autism. It’s a bit like living in the Truman show, where everything has to be exactly the same every single day. And most of the time, that’s okay but what I wouldn’t give for a bit of enthusiasm and excitement about a trip to the zoo or similar...!

YANBU, no.
I have a friend whose now-adult DS has severe autism, now combined with grand mal epilepsy. He has the mental capacity of a young child, but has bouts of extreme violence at times and, being well over 6' he has quite frequently hurt his mother.

Of course she loves him to bits, but she also worries how he will cope - he requires assisted living accommodation with medical personnel available - she would definitely give him a pill to take away his pain, his disabilities, his epilepsy, his anxieties and make his life easier for HIM.

We have direct payments for respite but no one with the experience and training to do it.

@hippisarerad i get you totally. Everyday, I fully expect one of mine to be dead. I brace myself as i open the front door at night. The suicide attempts are more of an attention thing. But one day it will go too far.

Yanbu. I like how the media put this rosy spin from parents with autistic children but not enough emphasis on the fact its fucking hard.
I verge on tears on a daily basis for my son and myself

He's only 2 and very heavily autistic.

Hats off to those parents with other children to care for too.

Just wanted to say that.

I have 1 dc with autism and could not imagine having other children to care for on top.

Its hard. I have a 6 year old and almost 5 year old too. 6 year old has suspected aspergers too.

hipposarerad you are so right, I would love to change the bits of dd that make her, and our, lives harder. I wonder why there is not more research into all this. I know the anxiety is not her personality or her real self.

Anymore than the dyslexia I have, or the shyness I had as a child, or the OCD I had as a teen (and still have to some degree), or the anxiety I had in my thirties are really me. They are just things that make and have made life so much harder for me.

I feel exactly the same OP. My DD is HF Autistic but also has vocal Tourette's syndrome! It drives me absolutely crazy (single mum in a tiny little house) and I hate myself for it.
I find myself reaching a limit and shouting to her to stop it/shut uppppp! - Yep, very cruel, I know. She can't help but then neither can I?

I have three children DS1 (7), DS2 (6) and DD (2).

DS1 was diagnosed with HFA and mild giftedness. He only started to struggle last year.

My other two will be assessed in the new year. DS2 has always been extremely difficult but because he was sociable we were dismissed as bad parents or told he was just gifted. I now know we are most likely to get a diagnosis of PDA.
My little girl has just shown signs of autism. I'm not sure how bad it will be for her but I fear she may have PDA.

I have been in a dark hole this past month. I love them dearly but have grave fears for all their futures. If I knew I would never have had kids. I hate walking up as I have no idea how the day will pan out.

People keep trying to get me to see the positives, eg they are all very clever etc etc. They don't see the meltdowns, excessive need for control, the worries, lack of playdates party invites and the looks people give you when they act up. It's shit, it's relentless and there is little hope of things getting better. I cannot imagine how it is for people who have children who are on the other end of the spectrum. Autism is a club noone would choose to join. I try to see the positives but it is so bloody hard.

@WidoWanky & @Italiangreyhound and (hugs)

You’re not awful at all OP. I too have felt this way and sometimes still do (son has ASD and ADHD) but I have felt less negative over time about the diagnosies DS has and what life means for the rest of the family.

I know how you feel @Sleepyblueocean love to you and him x

Thankyou @Aeroflotgirl its ok not to be ok eith everything xxx

@Aeroflotgirl exactly that ,reality.Cold,hard,sleepless,covered in scratches,worrying,nervous,reality

Im glad im not alone @treeogal x

@thighofrelief101 yes i find that hard to stomach.My niece is only 4 weeks older than DS and my SIL and brother moan about her all the time.I have to leave the room

I always say if I had a son missing a leg would I celebrate one leggedness? Would I be counting my blessings that some kids have no legs, or promoting leglessness as a quirky trait to be embraced?
Would I fuck. I'd do my damndest to get them proper legs and a proper life.
Op yanbu

Haven't RTFT but didn't want to read and run. My DS has autism also ADHD for which he is medicated.

While my son is not severe, we have our own difficulties. I am a member of a few facebook groups and it is full with the kind of people you described.

I agree with you. If a cure came out tomorrow I would give it him without hesitation