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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:
BeardyButton · 03/09/2020 21:17

Of course YANBU. You are an absolute hero. Though i guess that doesn't help with your (totally understandable) feelings.
I dont know what to say, except your son is so very very lucky to have you.

jeanne16 · 03/09/2020 21:17

Could you look for full time residential care for your DS? This may be the best solution for all of you as your situation sounds untenable.

Clariana · 03/09/2020 21:17

I am so sorry, it is very hard. My son has ASD too, and you definitely have to grieve for the child you thought you were going to have, please allow yourself time to do this. However, as others have said, there are positives as well, I really hope you feel better in time.

JKRowlingIsMyQueen · 03/09/2020 21:21

This reply has been deleted

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Chocolate1984 · 03/09/2020 21:23

I completely understand. I have two children and it’s hard to watch my second live the life my eldest could have had. Little things like having friends, being invited to parties, play dates. Being happy.

I don’t think people understand autism or how it can affect each individual. My friend’s daughter is a lovely, bright girl, who masks beautifully at school but unleashes her temper at home. My friend is covered in bruises and bite marks. Another friend’s kid was removed from school for violence. He is like a 4 year old in a strong, tall 14 year old body.

I hate autism. I don’t think it’s a gift or positive at all. I avoid the parent support groups because no one is allowed to say anything bad.

AntiSocialDistancer · 03/09/2020 21:25

I am so so sorry you're going through this. A regional charity here offers support workers for Autism, are there many support groups you're a part of?

Have you always felt like this since you had his diagnosis? Wouldn't blame you at all I just want to check you're not additionally struggling with your mental health recently on top of everything else you are going through Flowers

Coldwinterahead1 · 03/09/2020 21:25

Institution? I don’t think they exist anymore thank the lord. What a thing to say

Cheeringmeup · 03/09/2020 21:26

I'm so sorry, that must be so hard. To see other families taking those small joys as a given must hurt so badly. I have no words of comfort, only admiration for your strength. I hope things get easier with time Flowers

SunshineSuper · 03/09/2020 21:27

I recommend 'There She Goes' with Jessica Hynes and David Tennett on BBC iplayer for everyone looking after children, it applys to us all. It made me laugh and cry and feel more connected to others whose journey I only fleetingly observer.

Best wishes itsfunny

As an aside whilst I was queuing for the loo in M&S, we could overhear a baby screaming for what felt like an eternity in the mother & baby cubicle. Their was so much love and support going out from all of us in the queue - no matter how old our children towards the mother having to cope with that, it was a lovely, very human, moment. Please always assume we are all on your side when things are tough in public.

testingtesting101 · 03/09/2020 21:28

It is dreadful and I am so, so sorry. The grief and sense of being robbed never really goes away, one just seems to revisit it as each milestone isn't reached. I hope you can get more support and possibly see a way forward. We are looking into residential care and sooner rather than later, before our physical and mental health suffers any more.

SoManyActivities · 03/09/2020 21:30

It's OK to feel like this. Flowers

I sometimes think that 'Welcome to Holland' thing can be quite unhelpful to be honest.

Original poster
Itsfunny · 03/09/2020 21:30

@JKRowlingIsMyQueen wow just wow.how would you feel if someone asked you at your lowest ebb what you asked me?its easy to talk crap on the net to a broken stranger isn't it?.pray you or your loved ones are never in this situation

OP posts:
LEELULUMPKIN · 03/09/2020 21:32

Sadly, I hear you loud and clear OP. My DS now 15 is totally non verbal, doubly incontinent, severe learning difficulties, unable to dress himself, cannot chew so eating is a bloody nightmare, he is also partially sighted and will never live independently.

You have every right to feel how you do, as do I. We have been robbed and it is important to acknowledge that. There is no shame in feeling how you do.

If you want to chat privately feel free to PM me. Talking DOES help x

JovialNickname · 03/09/2020 21:35

I am so very sorry OP. I have no experience (other than an autistic ex partner) but I can imagine how gut wrenching it must feel and how hard day to day life must be for you. I would say you are an amazing person but I expect you're sick of hearing that.

I know I will get flamed for this but have you considered having another child? Not to replace or to "make up for" your much loved first, but to possibly experience the specific things you have been missing and to enjoy the full spectrum of motherhood. As you say there are no obvious indicating factors in your family for autism, it may be that you may have a neurotypical child as your second.

LEELULUMPKIN · 03/09/2020 21:36

I also wanted to say that we had a DS who was stillborn before our Son, so he was very much wanted as was your Son.

We couldn't have any more but I wouldn't have had any anyway as it wouldn't have been fair on a sibling.

Him being an only child highlights it to a degree I think, however I am only speaking from my personal perspective.

I know none of what I am saying changes a single thing for you but I just wanted you to know that you are NOT alone.

thewhitechair · 03/09/2020 21:36

YANBU. You’re right- it isn’t fair.

notregistered · 03/09/2020 21:37

My experience of this is working with families of disabled children for the last 20 years. I have seen first hand the stress, heartbreak, regret, fear. I am so sorry you are in this position.
Have you access to all that is available? Continuing health care? Residential respite? A social worker?
I completely get it. You're in an awful predicament and I send you many hugs

SentientAndCognisant · 03/09/2020 21:37

I want to acknowledge your post
You're understandably grieving the life that you wanted,day dreamed of.
Instead you have a demanding & arduous daily routine and it feels relentless

Supersimkin2 · 03/09/2020 21:39

Institutions were shut cos they are expensive, not cos they're bad for the residents.

Many people are miles happier in environments designed for their needs.

OP, foster care is an option. No one deserves a ruined life.

Therunecaster · 03/09/2020 21:39

@JKRowlingIsMyQueen

Not trying to be insensitive, but is there an institution you can put him in?
What a very unpleasant thing to say to someone. You should apologise and work on your empathy skills.
Lougle · 03/09/2020 21:40

@Advicewouldbeappreciated

Have you read 'Welcome to Holland'? X
I think it's only people who have never experienced such things who would suggest that poem. I first read it when doing a placement on a burns unit and I thought it was profound. So helpful. But I didn't have burns and I didn't have a child who was burnt. Several years later, I had a child with SN. 'Welcome to Holland' took on a whole new meaning. It was not profound, or helpful.

I think the version preferred by many parents of children with SN is 'Welcome to Beirut.'

Brieminewine · 03/09/2020 21:40

That sounds so tough, I can imagine I would feel the exact same, it’s all those little things you dream of that make up the big things Flowers

I think (hope) the PP who mentioned an institution isn’t from the UK and isn’t aware that that isn’t the terminology used for residential care!

Original poster
Itsfunny · 03/09/2020 21:41

So many lovely caring responses,I'm overwhelmed with the kindness.thank you.its been such a hard year so far,lockdown has really tested me,we've had very limited help throughout it as services were cut right back.
I dont want to be the special needs mum,I hate Autism, hate parent groups too, like chocolate1984 said you cant say these things there,so wheres the relief and support?i hate having to get on with it,handle it,hate the hes a gift comments,or worst still God only gives you what you can handle!yeah fucking right well I bloody well cant handle it and it's not a gift and it's not ok and I'm not coping!

OP posts:
SamBeckettsLastLeap · 03/09/2020 21:42

I'm sorry, I'm sorry that people reading popular fiction feel that they have the answer. I'm sorry that the term autism now conjures up Sheldon Cooper, or that it's just that you are not 'communicating' properly. I'm sorry I'm sorry when I know that it's the crapist word ever. You are not being unreasonable.

Therunecaster · 03/09/2020 21:43

@Supersimkin2

Institutions were shut cos they are expensive, not cos they're bad for the residents.

Many people are miles happier in environments designed for their needs.

OP, foster care is an option. No one deserves a ruined life.

Winerbourne view, Whorlton Hall and various other institutions highlight the terrible treatment of people with learning disabilities and autism people can receive when they are warehoused miles away from their homes and families.

Funding high quality community based care is far more expensive than purchasing a residential type placement.