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.

What's awful is society's view - mainly supported by self-righteous NT people - that it is just something the parents have to get on with.

I am expressing this badly but I see woman after woman whose life has been ruined, (no sleep, no friends, no money, no career), battling for the crumbs of "help" from a society that either ignores her or occasionally say she is a "saint" before moving on to something more interesting

The money is there. The skills and expertise are there. Yet we leave these woman and their children to suffer for twenty or thirty years alone.

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.

Currently to have a child with severe diabilities is little short of a life sentence. (And yes we do love our children)

Op I read this thread last night and woke up thinking about it.

Can't add anything helpful but for you, Knight, and all the other parents living this I can only imagine I'd feel exactly the same.

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.

When will she have time for counselling? How to pay for it? People really don't get it. 'Get DLA and Carer's Allowance', those are like throwing a drop in an ocean, it's a pittance.

Ignore the lame posts, OP - comparing what you live with to not having a boy child or being bereaved of a parent young.

As for that fucking Holland poem, just no.

You are not alone OP in feeling this way. I have a similar child, severe autism, attends a special needs school with one to one support who will never be independent. At times I have thought it would be better for us both to be dead rather than go on living this way. We don't get any respite and the only breaks we once got provided by grandparents have stopped completely due to covid. He doesn't sleep and I fear for the future.

I get really depressed by all the autism support groups as most of the parents have children with only mild difficulties and although it may not feel that way to them the experiece is a world away from dealing with the realities of a severely autistic child.

The only two things that have helped me are money and a second child. People say money does not buy happiness but when you have a disabled child it is so important in buying you time and freedom. I have tried to stay employed also to give me a break even if my salary over covers the childcare.

After 9 years we were finally brave enough to have a second child. I am so glad I did, the experience is a world away from that of my first and although it is hard looking after both he gives me hope for the future.

There are others in a similar situation who understand. If you would like to PM me OP you would be very welcome.

You may well be aware of this organisation already, OP, but just leaving it here in case it may be helpful - info on support & respite for carers:

carers.org/

I just want to say Thank you OP for being brave enough to post this thread. I have explained my situation further upthread and reading so many supportive posts and reading other Mum's experiences has made me feel that little bit less alone.

I hope others have felt that too, so Thank you again and please keep posting if you find any comfort in this thread.

Far too many of us really DO understand.

Sending you love OP, sounds so hard

I can't say much to help OP but just want to stand in solidarity with you. You have been robbed. I have 3 children with autism but none of them have anything like the difficulties you are going through. I do have a friend with a dd (8) who is non-verbal with severe LD. She loves her DD dearly )and her dd is extremely affectionate and loving which does help how you feel I think) but she never gets a break (special school but there always seems to be a reason the little girl can't attend), her marriage is in tatters, her health is suffering. Her house is regularly wrecked.
I agree with FirstOfficer Douglas that we should have a much higher standard of care in society for families like yours. You are just left to get on with it and it isn't fair. I'm so sorry.

On a separate note I am surprised at the vitriol directed at "welcome to Holland". I read it (just once) when my son first got a diagnosis - he was 3, non-verbal, very sensory seeking, we didn't know what the future would hold. I recall that I found it mildly helpful. I found positivity in the idea that the place you were going wasn't the same as everyone else but was still worthwhile visiting (which it has been for me). Perhaps I need to reread it and see what eveyone hates about it.

I'm so sorry. I haven't any experience that's relevant to offer but I can empathise so strongly with your feeling of perpetual, self-lacerating disappointment about being different from other happy families. My beloved DF was severely disabled and I was an only child so I saw this from the other way round.

All I can say is that this, right here, this age, this cunting pandemic is the worst point. There was a woman in London recently who murdered her autistic son, because she had had no help. It's true that the right people are out there and want to help you, and hopefully over the next few months more normal support structures will be able to carry you. Where do you live?

This might not be the right thing to suggest, but do you have other children in your life that you could build relationships with? I was a very tomboyish child and my dad couldn't do any of the things I wanted with me. One of our neighbours (a lovely teenage boy, only about 16) used to take me to climb trees and taught me to ride a bike.

We don't think twice about a GP surgery in every town. We should have the same for care.

Families existing on the pittance that is carer's allowance or/ and DLA for kids - ridiculous.
peony9876's post explains how a bit of money can help with some of the practicalities. She can work, she can buy respite, she can even have a second child. No-one without funds can possibly do that. But the (government) money is there - it just gets spent on different things.

I'm sorry op...it sounds unbelievably hard. You're allowed to grieve for the life you were expecting

YANBU - that sounds unbelievably hard.

@FirstOfficerDouglas Very well said.

Carer's allowance equates to 39 pence an hour.

Imagine how much it would cost the Government if we all turned round and said we are not/can't do it any more.

There should be more awareness about it. On the few occasions I have discussed the situation with people who have no idea how much it is, each and every one has come out with ridiculous amounts they think it is.

If only............

I am in a similar situation op I have a ds with autism and LD, non verbal still in nappies age 9.
Just wanted to say thank you for posting this it has helped me feel less alone.
The way you write really puts across succinctly how it feels to raise a child with a severe disability.
I don't think people actually understand until they are living it unfortunately .
Your love and protectiveness of your child comes through in your posts. You are a good mum who is doing the best they can.

If you ever want a chat feel free to pm me.

LEELULUMPKIN -

Carer's allowance equates to 39 pence an hour.
Imagine how much it would cost the Government if we all turned round and said we are not/can't do it any more
But they know we won't - because the social pressure would be huge. And we love our children.

@FirstOfficerDouglas

What's awful is society's view - mainly supported by self-righteous NT people - that it is just something the parents have to get on with.

I am expressing this badly but I see woman after woman whose life has been ruined, (no sleep, no friends, no money, no career), battling for the crumbs of "help" from a society that either ignores her or occasionally say she is a "saint" before moving on to something more interesting

The money is there. The skills and expertise are there. Yet we leave these woman and their children to suffer for twenty or thirty years alone.

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.

Currently to have a child with severe diabilities is little short of a life sentence. (And yes we do love our children)

Agree with this 100%

Sorry but this "Welcome to Beirut" idea is disgusting. Beirut is a real place. I've been there. People live there. You are using their real deaths or your perception of their real deaths in a "war torn country" flippantly as a placeword for how awful you feel your life is. Oh, my life is relentless and terrible; it's like living in Beirut.

The "Welcome to Holland" analogy worked because it's about expecting one thing but getting another. But "Welcome to Beirut" only works because what's implied is that you are expecting one thing but get something worse. So you expect Paris but get Beirut, which is a bad place. Can you not see why this is just wrong?

And let's say you're right. Beirut is awful and war torn. Then isn't comparing your life to it even more offensive? You are comparing deaths from war to your parental issues. I mean, hundreds of people died there literally a few weeks ago in a terrible explosion. People are still being found under the rubble but you are flippantly invoking their deaths.

Sorry to the OP but to everyone who keeps bringing up Beirut - just stop!

It does feel like a life sentence. We all know that when we have children life will change and priorities will change but we also picture them growing up to be independent, getting a job, getting married and moving out. When you have a sn child there is no end in sight. The only way my daughter will ever move out is if I refuse to care for her, I I abandon her and leave her in the hands of social services, there are no residential placements ,places have been closed in favour of “help in the community” but no one wants to support our adult children on the community (the people that do are amazing but underpaid and unappreciated) so we are expected to care for our children until we die.

My dd is almost 15, I try so hard to prepare her for life as an adult but the older she gets the more it’s clear that she won’t be able to live independently and that I will always be her carer. But what about my life? Apparently I no longer have one and don’t deserve one. Dd needs constant supervision, she’s up at 5am every morning, she’s often a danger to herself, my house has locks on most of the doors to keep her safe and to stop her breaking things, her sister has to keep a padlock on her bedroom door. Today she has returned to school (sn school) and I feel totally lost because I have no life, no real friends, dd has become my whole life. I do manage to work part time but at the moment this is a struggle as I’m constantly tired, going to wok makes me feel a tiny bit normal.

More need to be done to support parent carers, more needs to be done to support our kids into adulthood so they don’t have to remain at home until their parent/s die because what happens when we are no longer here to care for them? How will the adapt after having us care for them for 50+ years and then being in their own? Why should we have to spend the rest of our lives being a carer, not having any life of our own?

Yes, I too loathe the Beirut references

Lovemusic33 - exactly. And "care in the community" is anything but! You often don't hear about "help" until long after you might have needed it - or not at all. You get pushed from place to place, you hold for hours only to get through to someone who says "It's not down to the school/ the hospital/ social services - can you call XXXX instead" . You spend time and undertake difficult journeys to attend meetings which within five minutes you realise will be no help whatsoever.

There has to be a place, a physical place where you can go and NOT have to explain from the start why XYZ is not suitable for your child. Where they know what it's like and where to get appropriate help.

It’s okay to grieve.
My eldest has autism and adhd, however when he was young the professionals assumed he wouldn’t amount to anything. Wouldn’t even speak. Would never be independent. Would never do anything basically.
He’s nearly double digits and he’s proven them so bloody wrong. He does still struggle of course, but I’ve been slowly but surely encouraging him to be independent and it’s working. He can talk, he can walk, he’s in mainstream and is catching up with his peers with a lot of work.
What I’m basically saying is don’t take it as a be end or end all, with support and a lot of hard work and encouragement things can improve even if it’s a slight improvement.

I won’t give you any advice OP. But I will just say, I empathise with your situation and your family situation and hope things start to get better for you.

Op I am so sorry you are in this situation. I myself have never been in the situation you are in, but my mum has. When I was pregnant with my first, my DM opened up to me about what it was like having my brother (he is 13 years older than me). My brother has Cerebral Palsy and is Autistic. She was 21 when she had him, was running a family business and looking after my DF's elderly parents, she said she felt so cheated because she was the only one out of her 4 siblings that didnt have to get married because she was pregnant, my DM and DF and been married a few years before they had my brother, he spent 4 months in hospital and the day after he was born the midwife on the ward said 'I wouldn't hold out much hope for yours love's in front of the whole ward. After hey had me he started going to a special boarding school and only came home on the weekends as he could get violent, then only in the holidays, once he left school he was moved to a private bungalow owned by the school and they usually go and take him out every couple of months, but obviously because of COVID-19 they haven't seen him since February. My DM told me she always wondered what she had done to deserve it and the guilt she feels hardly ever seeing him is immense on her, the only positive I can give is that he is so happy where he is, he hates to actually come home, which is why they only ever take him out for the day.
I can't promise it will get better or easier for you OP, one thing I will suggest is are you sure some of his violent behaviour is actually behaviour problems, because my brother could get really violent and lash out, he couldn't speak and it turned out he was suffering from really severe reflux and was in pain which he didnt understand and would then lash out, once he was put on the correct medication he was a lot less violent. It might be worth looking into.

Much love, OP

Why should we have to spend the rest of our lives being a carer, not having any life of our own?

Exactly this. Parents (especially mothers) of children with complex/multiple SN are just written off and expected to get on with providing 24/7 care. Ok, school is a break, but I've worked with adults with these kind of issues (residental care) and there is almost no support at that point. The adults I supported had their placements because they were either a serious danger to or from their parents and even then there was a far greater demand for placements than supply.