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.

OP, I’m so sorry for you and the others in the same boat.

It’s hard.

Bollocks to “their brains are wired different way” and “gifted with autism”, “so special”

DS1 is NT, DS2 has autism. He’s 6, non verbal and still in nappies.

I still can’t understand cruel joke that nature has played, leaving the hospital with healthy boy to staring at the walls for hours and screaming 2 years later.

I’m mostly ok with it but then the grief strikes when I see the family on bikes(I’d love to take both of mine). Grief for what our life should look like.

It’s shit. It’s literally shit, washing it off the walls, toys, clothes, everything.

The fear what it will be in the future, who will take care of him when we’re gone.

I still don’t know how it happens?This is something that bothers me, I never get a closure how, when and what happened that his brain is not functioning properly.

💐💐💐 to all of you.

I'm so sorry OP. YANBU. It's not fair.

I'm so, so sorry. That sounds so relentless and hard. I would feel the same, without question.

Things don't stay the same forever, they just don't. So, my hope for you is that your son progresses in some small way that you can find some peace with him, with your life.

OP, one of the most heartwarming sets of human stories I've ever heard came from a group of foster carers who specialise in care and respite for famillies in your situation.

They all loved their work and the DC. DC seemed to thrive too. It's easy to be so ground down that the thought of leaving your precious DC with someone else for even a day makes you feel guilty, but don't be.

The right people to help are out there, if you can screw up the
energy to fight to find them. Start with a SW and a lawyer.

Oh OP I am so sorry. You are grieving the loss of the motherhood experience you hoped for but will not have and it’s ok to feel the way you do. In fact, it’s healthy to say it and get it out.

Life fcking sucks sometimes. I lost my mum at a young age and she never got to see my children, never got to see me get married, I cry for her often because I lost her so early and every time I cry I feel like that motherless child all over again. That’s not how I wanted my life to be, not how I thought it would turn out. But it’s how it is and there is nothing I can do about it. So I recommend you grieve this loss, be kind to yourself, support yourself and nurture yourself and if you can, get some counselling to work through this stuff.

Then, there comes a point where you kinda stop fighting it. It just feels easier to drift with the tide rather than constantly trying to swim against it because it’s utterly exhausting. Yes, your life isn’t how you envisioned it, so many of our lives aren’t. But that doesn’t mean you cannot experience joyful times, find peace in what you have and find a place of acceptance where you acknowledge what you have lost but you can still carry on with a different future than the one you thought you’d have. 🌹

OP - I think you’ve hit the nail on the head.
Imagine if we had loving support?
Husbands/partners can’t do it endlessly either.
I’d absolutely love to have more community.
I went to a wonderful group when DD was little (can’t now because it’s closed because of COVID-19). It had parents and mostly autistic children (my DD was the only immobile child). The love and sharing and care made me think “ I can do this”.
I’m thinking we should start a revolution where we start these groups up again - all the sad, forlorn parents get to put their children into a safe, controlled place, stay with them and just offload (with a coffee).
Op - pm me if you want

I like welcome to Holland, yes it’s twee, no it’s not hugely profound.

But, it was the first thing I came across that actually acknowledged that there is grief there for the child you thought you were having - in fact that there was anything to grieve even...

That it wasn’t all, look at you being a special parent to a special child

I hear you OP

Life can be fucking cruel. YANBU at all for feeling robbed. Hell, anybody would.

My son is on the severe end of the spectrum and it's bloody hard work but he has got easier as the years have gone by x I too sometimes get waves of grief for the child I didn't have but they come less and less x

@Russellbrandshair Your post really resonated with me as I too lost both my parents while young and cannot count the times I have cried for my Mum & Dad when dealing with my DS.

I know they would have been so so good with him yet my DH's parents who are both very much alive have no interest in DS whatsoever.

They have probably seen him about half a dozen times in 15 years and never once offered to have him even for half an hour to give DH and I a break.

It's totally crap.

💐 I’m sorry that you are in this situation. I hope you get all the support you and your family deserve. I really wish there were more resources going towards families like yours.

I sympathise very deeply with you, DS2 has very mild autism in comparison with your son. But the early years were hell. He just screamed and screamed and vomited and vomited and screamed. He stiffened if I touched him, never made eye contact, had severe physical delays. I felt at the time as though he just didn't like me. Irrational, but I got no love. It was just backbreaking toil of changing sodden sheets and wiping sick from every surface day in day out for years on end. I felt desperate. On top of this, he never slept. He was twelve before he slept through the night without interrupting us. He wet the bed every single night until he was twelve too. Those years were so difficult I have almost blanked them from my memory. Even typing them gives me a physical rush of anxiety. I ended up on anti-depressants for most of his childhood.

But his condition is very mild in comparison with your son. I know how desperate I felt. Insane with longing and envy at the easy loving babies that played and bonded, the children that made friends. So you are absolutely not being unreasonable to feel as you do. I would. You have been robbed of something you wanted and would have cherished. And so has your son. I am sorry.

OP I am so sorry for how difficult your life is currently. A very special friend, who can be completely honest with me, described it as a life sentence a few years ago.
Her DD is now 41, confined to a wheelchair, very strong and violent and doubly incontinent too - friend was 22 when she was born and it came as a complete surprise in what she thought was a healthy pregnancy. Her daughter has spina bifida, hydrocephalus, epilepsy and autism. Say what you feel here - you need somewhere you can be honest - hiding it is what drives parents to suicide and other drastic action.
Also for those who say things don't stay the same forever my dear dear friend has found they often do stay the same and sometimes they just get worse. She hates all the platitudes that have been trotted out in almost four and a half decades of being the best Mum she can be in often unbearable circumstances. Some situations are shit

I’m so sorry OP, YANBU.

A family member is a carrier of a rare genetic disorder and as a result her child was born with it.
He is non-verbal, incontinent, autistic and is heavily visually impaired, he has had many operations and will continue to have many more.
She loves her son very, very much, but she mourns the life she thought she would one day have.
She once told me that the day he was born, was the day that her life both started and ended, and that she will always be a little bit sad that she will never be more than what she is now. She said she is terrified of dying or becoming sick, as he will be left alone in this world, and hopes he passes first.

@Lcats

I am sorry.

Have another child. (I am sure you love your first dc too, but it won’t detract from it).

Best of luck.

Oh Dear God - are you serious?

OP is barely keeping her head above water, she is exhausted, flattened, depleted, physically and emotionally bruised and you think having another baby is the answer.

You can have my first FFS in 10 years of being on here.

www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf

I'm sure I will get flamed for this but two of my children were born with birth defects. An acquaintance sent me this in the mail and it has been very helpful for me through some difficult times.

You are not being unreasonable. You are being human. You are sad and you are hurt and probably pissed. You deserve all of those feelings. They will pass. They will probably come back again but off they will go. Come here to vent any time.

Is there any decent support for those struggling with SN children? Or is it a postcode lottery? Genuine question

YANBU. I too am sorry to read this and I can tell from your words how hard you are finding it 💐

Hi I'm so sorry OP, it sounds really hard and you need to grieve. My niece has autism and complex needs needing round the clock care. At 18 she moved into a wonderful house (paid for by the state) with shifts of very good live in carers. 3 years later she is actually much calmer and happier, benefitting from routine and professional staff doing their jobs. Her parents visit every day and have a great, loving relationship with her and also have finally recouped their lives and have time for each other and hobbies. Her childhood was tough for everyone even though she is much loved.

I’m so sorry. It sounds unrelenting and you’ve been denied the ‘rewards’ of parenting- the love, seeing growth and development and gushing with pride when they hit milestones.

People I know who have a child with the same level of autism have a lot more support- he is in a special home and they visit at weekends. They fought tooth and nail (and had the resources to do so, mind) including taking the LEA to court I think. I wonder if (with outside support) there is anything more you can get beyond 6h respite which is unlikely to even be touching the sides I’m sure.

I hear you. I have a 4 year old Non verbal ASD child who arrived after a very long wait and a lot of heartache. It’s the ‘firsts’ I miss. I missed so many firsts during the 12 weeks he was in nicu and now it’s 4 years on and I still haven’t heart him speak. We have no stories of the cute funny things they say. I have no idea what he thinks or feels about things. Xmas and birthdays are a write off cos he just isn’t aware of them.

Yet for all the sadness, that feeling when they DO achieve something is better than any cute funny word. And maybe it’s not an achievement by ‘normal’ standards but it is to us - I went a 20 minute walk with my DC for the first time ever today. We went to two shops. We were like a ‘normal’ mum & child. And it was pure magic.

Hold onto your tiny magic moments x

@Advicewouldbeappreciated

Have you read 'Welcome to Holland'? X

I HATE that patronising, tone deaf bloody poem with a vengeance.

@Lcats

I am sorry.

Have another child. (I am sure you love your first dc too, but it won’t detract from it).

Best of luck.

I literally can’t even type what I want to in response to this.

Do you KNOW how much hard work is it having a non NT child? Have you ANY idea what it would be like trying to introduce a baby into that situation? Have you even considered that for many many people it’s just not physically possible to ‘have another child’.

Go educate yourself.

Hah @InDeoEstMeaFiducia me too. Welcome to Holland is schmaltzy nonsense.