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 am so sorry, my heart breaks for your little family, both you and your partner and your child who also though they don't know it will also miss out on so much.

YANBU one little bit to feel robbed of everything that most people hope for when they find out they are pregnant.

A good counselor who you really click with might be a way to cope with your feelings.

I hope that life will become easier for you one day xx

@yolio some say evolution, others say a reaction to vaccinations. Personally, I think its genetics.

OP my heart breaks reading your post. That must be very difficult and you are doing amazingly well to get through one day to another. Nothing but hugs. Get all the support you can; nothing is too much. And don't be hard on yourself

I have no experience of your situation at all, so I'm not going to act as if I am and if my post is not relevant please ignore me. My sister has autism and is very young for her age and struggles verbally but is mostly able to do things for herself, though I doubt she will ever live independently, so I think my DM grieves for the fact she will never have the freedom of having an empty nest. However my best friend's view of parenthood is very, very different to how she ever imagined, so I can understand that perspective. She too grieved for child/children/life she had envisaged and some days are harder than others for her. People often dismiss her and say she should be grateful because XYZ but I say fuck that, you don't have to be grateful for everything and you feeling that way makes you totally normal. I always say to her that you're allowed to feel whatever you feel and that your feelings are valid and I say this to you too. Take care of yourselves

@EyeSeeWhatYouDidThere you don't have to be grateful for everything and you feeling that way makes you totally normal.
This!
My oldest is on the very, very mild end of the autistic spectrum, and it is HARD! I love him, but its HARD! and that is the mild end.
I don’t have the thankful for my asthma, I don’t have be thankful for his ASD. Yes, its part of him (so is his eczema, which I also don’t think I need to be grateful for), but it makes his life harder, and I don’t like things that make his life hard! I like things that make him happy!

Op I've read the whole thread. You describe what's going on so well and I wish there was a way it could be amplified so you could get some decent, proper, long term support. It cannot be a sign of any sort of advancement in society when families are left to deal this this almost totally alone and at the same time told they should look for the small moments of joy to celebrate! I find that these two things are twinned also in mental health care, as a way to shirk the responsibility of actually caring for members in our community. Far easier to quote a meme or crappy poem then actually figure out a way to actually help and how to find that support.

You have every right to be raging, grief stricken and desperately sad. Your life has been irrevocably, drastically and detrimentally altered and then mainstream society essentially says "stop and smell the flowers, it'll all be ok" while it flows on by.

OP, if you have a look at the talk topics it might be worth posting on the SN board. They don’t show up in active and you have to opt in to see them on your active convo’s, but there has always been a lot of support there.

And ignore the vile trolls upthread. Hopefully mn HQ will have words there...

Rosiejaune People are getting angry and disgusted by what you've said not out of hate for autism, nobody knows for sure if you really have autism or not (we're online!), but at the words that appear under your name on this thread.

You have spectacularly missed some of the, in this situation, not-so-subtle, cues in the OPs post. You are also talking about this from a personal standpoint when that's actually irrelevant here.

You obviously have a lot of anger and frustration about how you perceive society treating you. Kindly, I want to suggest that if you do have autism, then it is impacting how you are reading this situation and in a negative way. You have misread the room.

Nobody here hates everybody with autism, but the impact that it has on their own lives, yes they do.

And they're allowed to hate the impact it has on their loved-ones' lives too, because it brings additional suffering to their loved ones.

It doesn't mean they don't deeply love the people they devote their lives to.

You've no doubt heard that one person with autism is one person with autism. Well, OP is talking about one person with autism, not you. It is, as you're aware, a massive (ridiculously so) spectrum, so there are many diagnoses that present dramatically differently. Her experience is one nobody would wish on anybody else and she's allowed to be angry and devastated and exhausted (or anything else). Her talking about her situation is not a hateful act.

If reading the room isn't your thing then maybe this isn't the best thread for oh to be on because it's obviously upsetting you, and you yourself are causing upset on it.

*for you to be on

My son sounds very much the same as yours and I’m exhausted by caring for him round the clock alone. I feel at breaking point from having no life of my own. If you want to chat, please message me.

OP, my cousin was like your son and I saw the impact that had on his parents, and his brothers.

I am 100% sure that they loved him - I know they did there absolute best every single day for him - but even as a child of a similar age - the stress and the restrictions caused were obvious.

As an adult looking back, it's obvious, too, that wider family didn't really ever help. I spent a great deal of time with my grandma and her sister, but they next to never did childcare for either my cousin or his siblings. Neither did either of my Aunt's sisters. I didn't know to question that then, but I bloody do now. There was a point after which one person couldn't manage my cousin alone - he got too big, too strong - but there were years before that, and they still could have helped with his brothers.

I don't pretend I understand it - I saw it, I didn't live it. But, from what I saw, you have the absolute right to feel as you do, all of it. Its hard, incredibly, endlessly hard.

@BubblyBarbara

I sympathise in a mild way as I had two daughters and always felt I missed out by never having a boy.

Wtf. I have 2 boys and not having a daughter is NOTHING like this. Absolutely NOTHING. What a crass and insensitive remark.

This poem gave some solace to a friend of mine in a similar situation so I thought I would share.

@thegreenlight

This poem gave some solace to a friend of mine in a similar situation so I thought I would share.

You obviously haven't RTFT...

@HappyBdayWilson, bit harsh @thegreenlight was only trying to be helpful.

Oh god the Holland poem. Constantly.
I hate it. This kind of disability isnt the different niceties of Holland compared to Italy. The early years were a war zone. I have PTSD from it and see symptoms of the same in every parent at my dd school. All kids v severely LD. It's not just different. It can be periods of constant sleep deprivation and a lifetime of dealing with the fact that your child assaults and batters you. And almost everyone and everything you thought would provide support let's you down. Especially by chucking that fucking poem at you or some other useless meme. While you are breaking.
I know I posted earlier pointing out since of the silver linings I do sometimes see. But also let yourself feel the fear, the rage and the disappointment of it. Acceptance maybe maybe comes at the far end if that.

No experience here OP but I didn’t feel like I could not say anything.

You sound unbelievably brave but also sad and I’m so sorry about your situation.

I really really hope you get some help.

I’m sorry if I offended anyone - my friend who is in a similar situation and is an SEN teacher shared it with me. I really didn’t mean to cause any distress.

[quote HM1984]**@HappyBdayWilson, bit harsh @thegreenlight was only trying to be helpful.[/quote]
Posters here have explained why it's not at all helpful though, which s/he would have known if s/he'd RTFT.

Sorry thegreenlight. Up with disabled child all night. My balance switch is off this morning. I appreciate you are trying to help. I just boiled over with how much I hate that poem - partly because it was all well meaning folk had to offer. I've no filter this morning and we are in a good phase just now!

Just to say I’m so disgusted by the post comparing the OPs situation to “not having a boy”.

WTF is wrong with people?

I am so sorry OP. I work in a primary school unit for Autistic children, and see the day to day of how impossibly difficult it can be for many parents.
Absolutely no one would criticise you if you asked for more support.

OP. You’re not being unreasonable to feel this way. This is not the life you imagined for your child not for yourself and your husband.

It must have taken huge courage to post this.

This is a major life trauma for yourself, your husband and as a couple. Please think about getting some counselling and perhaps periodically through the years as with the physical development of your child, new situations will develop and which may cause additional stress you’ll need help to cope with and decisions to make. My heart goes out to you.

rosiejaune
My DH has autism.
He holds down a fantastic job but he struggles socially and has to consciously think about empathy as it definitely doesn't come naturally to him.
For him, autism is a tiny part of his life and it in no way defines him.
The one thing that he needs a lot of though, is his own time and space. He can spend many hours engrossed in his hobbies and without that indulgence he becomes stressed, irritable and anxious. So we indulge him.
I know for an absolute fact that my DH would never have the patience nor the ability to care for a child who needed constant high level supervision.
It would make him ill.
It's my opinion that it would make most people Ill.
We all NEED time to relax and switch off occassionally.
I wonder when the OP last got a moment to indulge in a hobby or to switch off??
I would never judge anyone who felt unable to cope in such situations. Do you think you would manage to care for a child like this 24/7?
There urgently needs to be more understanding and more support for families with SN children.