To feel so robbed

[Itsfunny]

My only child has autism,I've never had the joy of cuddles,giggles,tickles, the magic of his imagination, parenting has been one big heartache

i couldn't wait to be pregnant, he was such a wanted baby after a long time trying to conceive. The baby that arrived cried everyday,wouldn't respond to anything and hated being touched.he grew into a strong tall child,who hits and grabs me and who has very limited understanding due to severe learning disabilities that Autism has also cruelly given him.
I look around and see mums much older than I was when I had him with bouncing active chatty normal kids and see the love they give each other,see these beautiful bonds which I'll never have. I feel such jealousy,anger rage,sadness torment at times that I just want to run away. Why us?we weren't old,we didn't have autism in our families,I are healthy looked after myself in pregnancy.
I hate that I feel like this and would never wish anything on anyone but it's so hard to see young babies and children of family and friends surpassing milestones my now school child never met and unlikely ever will.
I wanted a baby so much,the irony is I'm going to spend my life looking after one which will never grow up. I feel robbed,motherhood has destroyed me.

@tinseltitsandlittlegits

My son is on the severe end of the spectrum and it's bloody hard work but he has got easier as the years have gone by x I too sometimes get waves of grief for the child I didn't have but they come less and less x

Absolutely agree x

@Itsfunny

So so many valid points.i totally agree society is generally of the opinion" oh that's sad,that must be hard, "but its your child,so you have to get on with it,theres no choice.

Two years ago i was so so desperate and trying to get help from social care I was told by a SW that you are a loving parent and we prefer you to self manage your son at home!I was suicidal with exhaustion,scratches up and down my arms,hair scrapped off my face having not been brushed or washed in a week,my body a bag of bones having had no time to eat and side effects of antidepressants. My hands shook with tiredness,stress and exhaustion. After that meeting I drove up to a bridge with my son and sat there a very long time.i couldn't do it,I felt so weak the thought of carrying him was what stopped me.

I do not understand your situation as I’m not even a parent, never mind one to a parent to a child with severe autism. Even then I wouldn’t know as every situation is different. I have been suicidal Yanbu

The truth is having a child with milder ASD than you describe @Itsfunny contributed to my clinical despression. I'm medicated now, which dulls my perspective on those days, but I'm fairly sure I had a mental breakdown.

Absolutely and unequivocally YANBU

I wish you well x

The 'helpful'things that people,family and strangers and care givers have said to me over the years
oh but autistic kids are geniuses really
He just needs to be told no and shown who's in charge
Hes just spoilt
Hes just badly behaved
Autism isn't real,hes just naughty
It's your fault because you were depressed when pregnant with him,bad hormones gave him Autism
I know someone who has autism who's a doctor now
I know someone who has Autism who couldn't speak but now is a millionaire
Have you tried putting him to sleep earlier?
Isn't there a place you could put him in like a hospital?
Have you tried feeding him xyz, so and sos child got better eating that
He will outgrow it
Hit him when he tries to scratch you so he wont do it
Lock him in a room and leave him to calm down
Did your scan not tell you he was this bad?
Its because you were in your 30s when you had him
Its because you did something in your bad life and this is your punishment
Some people are just meant to suffer
Have you asked the doctors if they can shock therapy his brain into working?
Dont know how you do it,I couldn't.
Autism is just an excuse for bad behaviour
You need to be firmer with him

These are some of the wonderful bits of advice from a range of people, might surprise you that majority of these people are classed as well educated.

Fuck, what awful comments from people

Yeah I hear you Op all the" helpful unwarranted advice",if I have heard Einstein was five before he could talk once i have heard it a million times ,I think people mean to be kind but no one really gets it untill they live it .

@gypsywater I know, funny thing is they all felt they were empathising and being helpful when saying these things.
Theres so much ignorance when it comes to Autism.In thd media its portrayed very much by the Sheldon types or the fluent Asperger types trying to find a date. The only times that Autism like the type my son has is featured in the media is when a mother has killed herself and her child due to not being able to cope and having no support.
Fact is Autism is not being adequately catered ,funded and provided for in the UK.in decades so little has changed.its so so sad as it ended up forming a society of secret and ignored suffering.

I’m sorry you are going through this x

I enjoyed "there she goes" ,the writer has a daughter who has a rare chromosome disorder ( as does my son) and she's non verbal and has severe learning disabilities ,I thought it was excellent and darkly funny in places , poignant as well I couldn't watch The "A " word as it is so far removed from our reality of Autism

I just wanted to say I'm truly sorry for all of the struggles that you have to endure. It's a travesty that there is so little support for you and your son.

I can totally understand why you are grieving and it is disgraceful that you've had to deal with so many insensitive comments from people trying to explain why this has happened.

I don't know what else to say but I admire your strength

All the things us parents are never 'allowed' to say, the things everyone claims to understand but few do. Our youngest has autism, I crave a life, a life where I'm not hit, bitten and screamed at.

Say it. Say it. Say all of it.

This problem stays a problem because of your silence and loyalty. Love yourself and your DC and tell it like it is.

OP I was reading this thread in the middle of the early hours this morning - having another sleepless night worrying and just generally feeling utterly shit about the hand that my son has been dealt. Like everyone some days are ok and some a rubbish - yesterday was the latter.

YANBU at all. It’s crap, for us a parents and for our kids. The autism is a gift brigade do not see how hard life can be for us or our children. My son is verbal and continent but has significant learning problems, can’t read or write won’t live independently. I’m not sure anything can prepare us for the idea that our babies will never grow up, they will always be vulnerable. I’ve tried radical acceptance, didn’t work that well but helped a bit at the time.

I honestly don’t have any answers, I wish I could feel at peace with it but I can’t. It’s almost like a permanent limbo of sadness... people say you feel better with time, I really hope for you and I that is true.

But I hear you, all of it and thank you for starting this thread. I would never say the above in real life (I try to be upbeat as a comping mechanism) and you’ve made me realise it’s ok to be angry, pissed off and upset at how our lives have turned out. That’s still shit I know but I really appreciate your honesty and others on this thread

I'm so sorry it's been so tough. Have you looked into intensive interaction? It can provide real rewarding communications xx

OP - I am so, so sorry that you reached that point when you drove to the bridge - but I am not surprised. I knew too when I saw the recent headline about the mother who killed her child and handed herself in - I knew what the story would be.

And grief for the child you didn't have - of course you feel it.

Thank you for your honesty OP. Thoughts with you - it is probably not a peaceful night.

How old is your son ? My son is 10 whilst he's still non verbal and in nappies ( which I'm trying to get him out of) he doesn't nip and scratch anymore and he sleeps through the night now believe me I know how hard it is. but small progresses can help it took a lot of work between me and school to stop the nipping and scratching

N0tfinished thank you for sharing.

OP - this is one of the most heart wrenching threads I've ever read. Your pain is palpable. I'm so sorry for the weight of it. Of course it's OK to feel the way you do.

I know someone who has a severely autistic child and they bought one of these beds. They said it was life-changing and they will even put it up in a public place during the day for their child if necessary. I know it may not work for you in the same way, but I contacted her and asked for the link to share with you in case you thought it might be useful.

www.hkdsolutions.com/urzone.asp

Think about you often and wondering how you are doing ?

I’m sorry OP. I have an autistic child although labelled ‘high functioning’, what does that even mean? It means he’s not ‘bad’ enough to warrant any help. We have meltdowns, I get kicked, hit, shouted at. Everything has to be his way, the rigidity, lack of empathy. It’s exhausting. He’s also bright, funny and clever. I love him, but the autism make life so hard. His sibling is NT and couldn’t be more different. I sometimes feel envious of my friends who don’t have autistic children and wonder how easy their lives are.

I can’t imagine what you are going through, it’s ok to grieve for the life you thought you would have. We’ve just been offered a parenting course, from what I’ve heard I’m not holding out for much. If someone suggests a sticker chart I won’t be responsible for my actions.