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.

I hear you OP.
May I ask how old your son is?
My first full-term pregnancy ended in stillbirth. I was 38 and it destroyed me. I gave up.
Til I accidentally got pregnant ( miscarriage) and at 41 decided to try IVF. It didn’t work.
3 months later, naturally pregnant.
I was worried re age and what had happened before.
12 week scan was told all good. 20 week scan was told something wrong.
Long story short I now have a 3 year old DD who couldn’t move at all at birth. She certainly can move now but she can’t swallow safely, so cannot eat or drink, she’s non verbal but can scream from 1am to 5am every night. She is full of naughty and is smart but she head butts and bites from frustration. She won’t let me talk on the phone or in person (not even to my husband).
I have no family support and no respite.
Nursery has just said they can’t take her back until she has a medical risk assessment (she was due back on Tuesday).
She can’t walk and I live in a (beautiful) Victorian house with stairs. I wake up in agony every day (shoulder or knee or back) from carrying her. She’s as big as a five year old.
I adore her.
But... it’s horrendously painful when I see other children/ her younger cousins- climbing stairs and belly laughing and talking and walking and just bring in the world.
I’ve stopped caring about other people’s children, I fats that about me,
I used to have a job. I was smart (I have a PhD) and now I spend my time thinking I can’t wait til Thursday night do I can have a drink (cause my husband is around),
I always promised myself I wouldn’t start smoking again after my kids but here I am, smoking once she’s asleep.
I am overweight and overwhelmed.
I can’t trust any one to look after her other than nursery.
There isn’t anything anyone can say. I know that our circumstances are different but I’ve gotten suicidal from despair at times.
And all I get is “oh she’s come so far”, “you are so strong” (same people said that when DD1 died and recently when my current DD’s doctor assaulted me).
Sometimes I don’t want to be strong.
Sometimes you just wish you could have a little bit of being weak and a fucking bit of normal.
I hope I’m not off-loading on you. I just wanted to let you know that I feel like you do. There’s nothing wrong with feeling like this.

What a heartbreaking post. Sorry

@Itsfunny I just want to say that I've read your posts. I don't understand, not fully. I have a DD in special school, but she is verbal and mobile and continent. I have a DD with ASD, but she goes to mainstream. I have extensive experience of meeting children with a range of disabilities, through my DD's schools, but I haven't parented any of them.

What I do understand is the overwhelming relentlessness of caring for a child with additional needs, and the fact that everything is on you. It isn't just physical, it's the emotional impact. It's never ending.

I am so sorry that you have such limited support. It shouldn't be.

Sometimes life is very, very unfair. I really feel for you OP especially given what Covid has done to people in your shoes.

There's only 1 type of Autism, its the co morbities that present all the other issues.

My old neighbours’ son was like yours. We were friendly enough to know how difficult they found it when friends / family had healthy happy sons. A few months after mine was born he just spent close to an hour making him giggle and smile because he never had that with his boy. Not even as a baby. I don’t really know what to say but I do sympathise.

[quote Itsfunny]@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[/quote]
I meant residential care like another poster said. Forgive me, English isn't my first language and I didn't know that is what it is called. I know someone who has their daughter in residential care and she is very happy. Didn't mean to be insensitive

I understand. And the welcome to Holland poem is bollocks.

I have two NT children and an autistic daughter. It is exhausting to say the least and she doesn’t have the issues that your dc faces. I am genuinely scared for her future, if for any reason I’m not around. She only has me. Your feelings are absolutely valid.

Does anyone know why ASD is so prevalent now?

Perhaps it is diagnoses now. So feel for you, I have a nephew with ASD and Cerebral Palsy, but he walks and talks, is in Secondary School, and is doing great. There is light.

My nephew is the most lovely guy. Focus on the kid.

You aren't alone in the way you feel OP. I am in a similar situation to you and it's so hard to process the loss of the child you dreamed of.
I remember feeling desolate about all the things I would never be able to do with my son. Not big things - just what everyone else takes for granted.

I have reconciled myself to it to some degree over the years but it's been a long road. I really feel for you

@yolio because the world is more knowledgeable

Your last post OP could be me talking! I hate parent groups and am not a "Joiner" so I know exactly where you are coming from and as for the amount of times I've had the God and Gift comments if I had a £1 for every one, I'd be a millionaire.

As for the PP who suggested an "institution" as if it were even that easy!

So many people have said that to me, with no thought for the guilt and heartache even considering thinking about that.

I've learnt that people are in the most part trying to be kind and I like you, had no experience of disability at all, so they just don't know what to say.

I am even jealous of my Sister and her 3 healthy boys which is a terrible thing to admit to. Only last week she showed me a letter that one of her boys had written to her saying how much he loved her and I just lost it. She immediately felt awful and I know that she hadn't for a second intended to upset me. It's really difficult for her too and I feel terrible that just because my DS is how he is does not mean that I shouldn't celebrate my DNephew's achievements.

Unless you have walked this road, people have no idea do they?

You are so not being unreasonable. I am so, so sorry. It sounds really hard.

I had dB with disability, we had lots of contacts with various groups and support centers, only one man there had autism.
I can't believe it's only just being diagnosed and that's why so many dc have it.

Op 💐💐.

OP I can't even begin to imagine, truthfully. I am so sad for you, so sorry for you. So sorry for your lovely baby who never got to be who he might have been. It is just shit, and I'm so sorry you are in this place.

Sending a hug. I so wish there was something more.

My BF's child goes for respite to a family who look after children and adults part time with severe autism. I am just wondeing if you have asked the school for any resources they know of . There must be something you can access, even if it is direct payments where you can pay for care for your Son through the scheme . You get PA'S to look after him for you when you want a little break. Good luck OP .

I am so sorry our feel like this. Lockdown has been an utter cunt for people in your position. Once things do start to normalise please do see if there are groups who can offer decent, funded respite care. X

Hi OP, I don't have a child with autism... or a child at all... but your cry for help made me read through this entire thread. I just wanted to say how sorry I am that you're struggling and it's okay not to be okay. You are entitled to feel robbed of the child you hoped for as I'm sure no one wishes to be in your situation. I'm sure it's not what you imagined your life to be.

I don't have any answers, but didn't want to read and run.

You have my first bunch of

@Krazynights34 thank you so much for your post.im so very sorry for your situation, it sounds absolutely soul destroying like mine is.i too have no life now other than looking after him.fsmily find him too much,I've now no contact with them because of this, I'm shocked at their selfishness,a couple of hours rest for me while they watch him is apparently too much and I'm not worthy of it,same family who say I should get on with it.ive lost friendships as my friends find my situation too uncomfortable.he destroys my home and bites me too.i used to have dreams for my future,nothing fancy,just a normal house,happy child or two,just happy,the earth,god,whatever higher being obviously thought I wasnt worthy.the despair of it all has led me to the edge many a time. Like you said theres nothing anyone can say.i think I would have handled this better if I'd had the right loving support around me instead of being left to fend for myself like a scared wounded animal carrying his precious hurt baby trying to find his path home.

Your post has helped me not feel like I'm the only one. I wish you nothing but happiness. You sound like such a wonderful mum.

It’s absolutely not fair. I can’t imagine how hard it is for you and your DH. Sending hugs and hoping you get some respite soon.

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

True. That's why there isn't any.

Op, I fully understand. Both my dc’s are autistic, neither hug me, neither have ever said “I love you mummy”, dc2 often looks at me as though she hates me. Being a parent to a sn child is lonely ☹️

I look at other parents and often feel resentful, seeing their children hug them, seeing them happily communicate and play. I feel I have missed out on that and often wonder if it’s my fault, something I have done wrong.

@yolio

Does anyone know why ASD is so prevalent now?

Perhaps it is diagnoses now. So feel for you, I have a nephew with ASD and Cerebral Palsy, but he walks and talks, is in Secondary School, and is doing great. There is light.

My nephew is the most lovely guy. Focus on the kid.

Better diagnosis, in part, at least among "high functioning" people for want of a better word. My DS has HFA. I have a lot of traits, but it wasn't picked up on in the 80s/90s. My dad has even more traits (in fact DS is like a mini version of him) but it wasn't picked up at all in the 60s.

Also, people with more complex needs were often shut away from society and even their families, so it wasn't as obvious how prevalent those needs were/are.

Sending big hugs @Itsfunny. I do really feel for and definitely do not judge how you feel. You have every right to grieve for the things you have lost out on.

I know how you feel, all 3 of my dc have autism my dd also has a lot of mh issues.

The youngest was dx first it was a shock. I have seen friends and family drift away as they dc can be challenging. All the things I wanted and planned for have gone. Everyday is bloody bloody hard.

Your not alone no one wants to speak about the challenging side or the loneliness.