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.

Hi op.my son has severe autism and learning disabilities ,he's 10 at a special school ,still trying to get him out of nappies( was going so well and than COViD!)and non verbal etc ,sorry about the ignorance on this thread ,it's clear there needs to be more awareness of just how huge the autistic spectrum is ,I have an older NT son ,whose wonderful with his brother but it does affect the whole family ,luckily my son is very loving and cuddly ,I just wanted to say some of us do understand ,and the last six months have been particularly hard my son is going back to his special school on Monday for the first time since march.

I would really like to see Mumsnet look into the support (or lack of support) available to mothers in OP’s situation, @justinemumsnet. It seems like the overwhelming needs of some children and how to cope as a parent is a very hidden issue.

The phrase ‘It takes a village to raise a child’ is never more true than when discussing children with neurological or learning disabilities who need the kind of care OP is providing. It’s disgraceful that significant resources haven’t been expended in funding proper, residential support for children who need this assistance so that parents can get regular breaks - not a couple of hours a week or one week in a year - to recharge and do meaningful things for themselves while their children are safely in the care of others.

Book recommendation: Far From the Tree

It's just so profoundly unfair. Sometimes it's impossible to accept things. But we still have to find a way of going on. Just sending you love

Op your honesty is admirable. I worked as a send coordinator and I can relate to what you describe as your daily, I've been into homes and observed what many families go through. The lack of support, especially before school age is appalling. One family in particular I use to provide rest bite for, her son was a fantastic masker in the setting but would let it all out at home and he was big and very strong.
I fully invisage him living in a support facility come his teenage years for her health and safety.
I just wanted to send you a hug and hope you get some time to be you very soon.

You are not unreasonable. Ds1 is very difficult and I've grieved for the child I hoped I'd have.

Cut yourself done some slack. It's a hard thing to come to terms with and no one who doesn't have it has any understanding.

Thank you OP for saying it as it is. 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. The simple things like being able to have a meal in peace, chatting to another adult and not being screamed or shouted at. I'm rambling, sorry. I hope you find some support somewhere, we live in hope. Take care.

Could you move house OP You say the stairs etc in you house is causing problems, would a bungalow be more practical ?

@firstofficerdouglas everything you have said is 100% true.We are society's hidden problem,DLA and carers allowance is thrown at us as if its going to help with raising a child like mine.truth is parents like me are imprisoned in our homes bound by the challenges our child needs create.i barely leave home,its so hard,my son doesnt know why he has to walk,he runs with wild abandon and scratches bites screams shrieks pulls my hair if I try to restrain him to keep him safe.he barely sleeps despite the various medications hes become accustomed to.6 hours a week is all we are entitled to,it doesnt even touch the sides.
I've always dreamed that if I won the lottery I'd spend the money to open a centre in every town up and down the country like you describe where mums and children can go and stay and use as and when needed.a place that's a one stop help for families like mine.so mums who's husbands work and are left alone to carry the burden can go and not feel so desperate so alone and so overwhelmed.i wish with all my being it was possible.

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.

My heart breaks for you
My cousin is a 40 year old version of your son, the impact it's had on my aunt, uncle and older cousin is equally heartbreaking. It's all consuming and impacts each and every part of life. My aunt is a very vocal advocate for support into adult hood and one of the strongest women I know, despite sometimes appearing to be on her knees.
I can't offer a solution but wanted to acknowledge your thread and what your doing

'There should be a specialist residential unit in every town. Small, with permanent and temporary rooms where children and adults could live with the support and care they need. Parents could use these places once a month or every day - depending on need. There would be access to whatever was needed, information on products and services, experts, education, space, therapy programmes -all available - so mothers don't have to scour the internet and research from a standing start to find a suitable nappy or the best pushchair or a brilliant play therapist. And no stigma. No trite memes. Just a practical approach so that women, families, siblings can live their own lives!! They can work and see friends and sleep and walk and have a nice home and read and BE - still with their child in their lives but not imprisoned by that child.'

What a truly excellent post from FirstOfficer

@Itsfunny I am so sorry this is heart breaking.

I do agree a mumsnet effort from mumsnet HQ to raise awareness and get support might help.a

As an adopter (of an NT child) I get access to a support fund.I think people in your position should too.

I feel humbled reading these posts.

It must be so much “easier” for people who have a big extended family and community set up to share the care. I don’t think a nuclear family works when 24-hour constant care is needed.

Oh Sweetheart.

Hugs. I’m not in your situation but have worked with quite challenging autistic children. I find some can be draining after a few hours and that’s without the emotional side that goes with your own child. I often wonder when they go home how their families cope as I know I would struggle to care for them 24/7.

I can empathise with what you mean by feeling robbed. We all have an idea of how we imagine our child to be and our lives as a family and even the most average child bursts that bubble but to have a child with severe special needs must be so difficult to come to terms with. I wish you and your family all the best and that you can find support for yourself and your child. I know I wouldn’t be able to cope.

@FirstOfficerDouglas
Your post is amazing and hits every point. It is an absolute disgrace how families with severely disabled children are neglected by the government and society. Its inhumane. Something needs to change. It is just not on for parents (mainly mothers, let's be honest) to be expected to just cope. Not acceptable.

Thank you for this thread-my son has ASD & when he was first diagnosed I too felt a sort of "grief" but couldn't explain it to anyone, I felt ashamed for feeling the way I did. The achievements (however small) add up-so shout them out loud. Remember to look after yourself though-you're important too.

Autism isn't one thing. Articulate adults with autism shouldn't tell parents of children with severe learning disabilities and autism off any more than parents of those children with autism and learning disabilities can tell those adults they understand their experience. There are some common experiences such as sensory issues, social communication struggles and feeling overwhelmed, but equally some apparently NT people struggle with some of those issues but don't truly understand what people with autism experience. Having a diagnosis and being able to post on MN doesn't entitle anyone to tell a parent of a non verbal child with challenging behaviour how to feel.

It's mind blowing how little support there is in the UK. The community model is held up as an ideal where I live but professionals don't understand that in countries like the UK it's just been a cover to save money and leave parents to sink. Many children like your son are in residential care here. He's lucky to have you but you need so much support and respite

No you don't know you wouldn't be able to cope at all @Tumbleweed101 ,how do you think parents cope ? Most of us are just normal and doing the best we can ,iwe cope because we have to and love our children.

It’s ok to feel robbed, to want all the guests that other parents have, to resent the limitations of your child’s life and the limitations it places on yours. I’d feel robbed too. It’s not a blessing or a gift to know that your child will always struggle. Or to know that you’ll be caring for him well into adulthood. It doesn’t make you any less loving to want your child to have all the things we wish for, while knowing that won’t happen for him. And to know there’s no fix, or meaningful help or support for you in caring for him. I’m so sorry for the losses that are inherent in caring for your son. It’s ok to feel robbed.

Goodness I’m so sorry OP wishing you strength 💐

@FirstOfficerDouglas just yes. Applause

[quote Itsfunny]@Bookaholic73 that's great about your child.my child hasnt this type of autism unfortunately. Hes severely autistic,non verbal ,doubly incontinent,has no understanding of verbal communication.[/quote]
Itsfunny, I'm so sorry for you. My son is autistic and non-verbal. He's 13 now. I totally understand your distress, I've absolutely felt as you do.

We had some really tough years, but my boy has come on so much. Perhaps not in ways others would understand but he has. He sleeps the night after years and years of awful broken sleep. His receptive language is better, he understands us and can follow commands. It took us a long time to toilet train, but he's night & day trained now. I finally gathered my courage to take the night time pads off over lockdown & he's been fantastic.

He's also just recently gotten the hang of his iPad! He can play games and select movies. This all happened over lockdown! Before that his 'point' was erratic but he's finally gotten the hang of it. Others mightn't understand but it's fantastic for us that he can entertain himself in a non-destructive way.

It sounds very odd but it was Mumsnet and Moana gave me an 'aha' moment & far greater understanding about him. This was about 6 years ago, he had taken a liking (after years of zero interest) in the Disney film Moana. Someone posted looking for film recommendations for a child like my DS. I replied recommending Moana & mentioned that he ran from the room during some parts of the film. Another poster said oh it's probably the peril. I honestly hadn't copped it. This proof that he 'got' the film enough to understand when the characters were in peril absolutely staggered me. I thought he just liked the ocean scenes & the music, whereas he had real insight into the story.

What I'm trying to say is that you can make a connection with him. There's a little person in there who's frightened and confused, but I'm sure you'll figure each other out. You'll be fine.

Also, he will change & develop with time. He mightn't ever read or write but he'll have interests and he'll gain skills. When my boy was small he was just pure chaos. He'd run around the house climbing on all the furniture. A total maelstrom. That's not the person he is now. Don't get me wrong, it's far from easy and not at all 'normal' but we're doing ok.

Best of luck to you both.