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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To feel so robbed

244 replies

Itsfunny · 03/09/2020 20:15

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.

OP posts:
endofthelinefinally · 03/09/2020 20:17

Oh, I am so sorry. I have no experience but just wanted to reach out to you. Do you have any support at all?
Flowers

Eeyorehoney · 03/09/2020 20:19

It’s okay to grieve the baby you dreamed of, and ask for support for the one you have, it doesn’t mean you love your baby any less- big hugs to you x

Bookaholic73 · 03/09/2020 20:21

You are not being unreasonable at all.
When you have a child outside of ‘the norm’, you need to give yourself time to grieve.
You may feel the need to grieve for that neurotypical child that you imagined, all those things you planned etc.

But having a child with autism is not the end of the world! There are so many wonderful things that they bring.
My child with autism is now 20, and has an amazing sense of humour, is self taught in Japanese, and is an amazing person.

Give yourself time to grieve, then try and look at the many positives.

Original poster
Itsfunny · 03/09/2020 20:26

@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.

OP posts:
Bookaholic73 · 03/09/2020 20:29

Sorry @Itsfunny, I didn’t mean to be insensitive.
In that case, please give yourself as much time as you need to grieve that loss of a neurotypical child.

Sending you hugs.

Sexnotgender · 03/09/2020 20:33

YANBU at allFlowers

Nixen · 03/09/2020 20:37

YANBU and i’m sorry. Is there any support or respite you could get? It must be so hard

Linaya · 03/09/2020 20:42

I'm very sorry OP. I don't have anything useful to say other than to send my good wishes to you. It sounds so hard. I hope someone with experience and better words can come along soon. Have you had any support from any organisations, a therapist, anything like that?

Coldwinterahead1 · 03/09/2020 20:42

Do you have a partner to help?

Serin · 03/09/2020 20:44

Itsfunny

Has your son been able to attend school during covid or is he at home full time?
The school that I used to work at (specialty autistic provision) has been closed for the whole of lockdown, and I cannot imagine how the families are coping without that support.
Do you have friends with similar children that you can share experiences with?
We have a young family member with non verbal autism and his mum sneaks into his room when he is asleep to stroke his hair, read him stories and give him a hug as it's the only way she can touch him.

Chickychickydodah · 03/09/2020 20:44

My little gs didn’t learn to talk properly until 5 , he gets very fixated on things And is repetitive but is a happy boy., he doesn’t eat well and sticks to a few foods but has vitamins to help. He’s got a special needs teacher at school that is brilliant and he’s very clever with his numbers. Children can learn things but sometimes it takes a little longer. Keep being positive and love him as much as you can 💐

parrotonthesofa · 03/09/2020 20:47

Hugs. My 7 year old has the same type of autism that you describe. It's very hard and I don't think anyone can truely understand unless they live it. Do you have some support and if not can you get some? Does he go to a school of some sort?
Reach out to people in a similar situation online or in real life. I follow a lovely page on Facebook called stories about autism run by a dad with two severely autistic kids.
I have grieved for the child he isn't. I still feel sad but he also gives me joy in a different way. I celebrate every tiny scrap of progress.

PerveenMistry · 03/09/2020 20:50

That sounds very difficult and discouraging. Do you have any help?

Original poster
Itsfunny · 03/09/2020 20:50

Thanks all,I have my husband as my only support, my son attends a special needs school mon-fridsy
Everyday and weekends hes home with me and my husband and hes a handful,its so hard and stressful.we get social respite of 6 hours a week,not a lot.hes got so many challenging behaviours and even taking him for a walk to the end of the street is a two person effort trying to control him and have him walk.He can walk but doesnt know why he has to if that makes sense so needs to be pushed along.

OP posts:
parrotonthesofa · 03/09/2020 20:52

Oops posted too soon. I wanted to say that it's okay and normal to feel sad and robbed. I have definitely feel that on so many occasions I have lost count. Jealous of others too. But also try to find the glimpses of joy where you can and try to accept and enjoy your child for who they are. I hope that doesn't sound patronizing. It's hard but they teach us so much and do give us so much, it's just different.
I worry about the future and what will happen but that's a whole other thread!

HappyBdayWilson · 03/09/2020 20:54

This sounds so difficult Flowers. YANBU to grieve the future you hoped for.

Legoandloldolls · 03/09/2020 20:57

My son has ASD so I do know how you feel. My son is in a indi SEN school so he has been given the best chance and is thriving within his limits. The grief of lost dreams I dont anyone can fathom unless they have experienced it.

I.mostly direct my anger at getting him a the help he needs hence leaving state run SEN. All of my negatives I transferred to my LA and boy did they deserve it.
I feel like I should say something positive and affirming but I know that can come across as dismissive of the severity of a lifetime of struggle, so I wont.
ASD can be a gift. Sure doesnt feel.like it when your child is 1/3 of their chronology age mentally.
People might say you have to embrace it, but one has to right to dismiss your emotions

BooseysMom · 03/09/2020 21:07

I'm so sorry Flowers

LunaTheCat · 03/09/2020 21:11

Oh that must be so so hard.
Take care. Cherish yourself. It is normal to have these feelings and You are courageous to express them.

Advicewouldbeappreciated · 03/09/2020 21:11

Have you read 'Welcome to Holland'? X

jrb123 · 03/09/2020 21:12

I'm so sorry Flowers

InDeoEstMeaFiducia · 03/09/2020 21:12

I'm so sorry. YANBU. Far from it.

HM1984 · 03/09/2020 21:14

I am really sorry to read you are struggling. I used to take my DD to SEN sessions at a local play group and I remember seeing a teenage boy, non verbal and limited movement, just sit and watch kids run around whilst he lay in the ball pit. For him, i'm guessing that is what he wanted to do and what made him happy at that time, whereas to others they probably looked at it differently.

If you haven't already, please read "the reason I jump" by David Mitchell. It was a real eye opener for me and gave me a different perspective on autism. Also, if you have access to respite care do use it. It is there for a reason and sometimes it is necessary to take some time to recharge.

You're a superhero to your child. Without you it's literally life and death. Stay strong and know that with each day, things can change. I know someone who had a child as you described (14 years old wearing a nappy 24/7, unable to feed herself, zero ability to self care, non verbal and became bigger than her so when she lashed out she physically hurt her mother), it was hard for her and she ended up getting funding to move abroad for a university study to help diagnose her child. The daughter is now 17 and she is more emotional regulated, independent self care during daytime hours (still wears a nappy at night) and goes to a school where she is actually learning (she has begun talking). I know these opportunities are rare but I just want to highlight its not all doom and gloom. She understands everything but her ability to talk back is limited, however she nods or shakes her head and attempts to get the words out. The mother is very much anti-drugs, so it wasnt like they used her as a test subject, but i know she is on a strict keto diet and limited medication.

If you don't already, I'd also recommend applying for DLA and Carers allowance to help with the financial side of the care.

I hope you start to feel better soon, just know you are not alone. X

Elsiebear90 · 03/09/2020 21:15

I’m really sorry, this is honestly a big fear of mine as I don’t know how I would cope and be happy in a situation like that. What I’m trying to say is please don’t feel guilty for what you’re feeling as I’m sure many many people in the same situation would feel the same.

InDeoEstMeaFiducia · 03/09/2020 21:17

@Advicewouldbeappreciated

Have you read 'Welcome to Holland'? X
I have a child with autism. I HATE fucking 'Welcome to Holland' and haven't met a single parent of a child with autism who loves that crap. Sorry.

My son is high-functioning. If I had a quid for every time someone asked me if I've read 'The Curious Incident of the Dog in the Night' or watched 'Big Bang Theory' I'd be able to buy adequate respite care for families of children with autism.