Feel like I've lost my child

[BreakdownInevitable]

I know this doesn't belong in AIBU, but I desperately need some responses, I've previously posted in SEN under a different name, but had few replies.

My little boy is 4 and was diagnosed with autism just after his third birthday. I am really struggling at the moment, to the point I feel like I'm on the brink of a panic attack half the time, and in a black hole the rest.

Up until the age of 15 months he was a happy, responsive, talkative little chap. People say there would have been signs, but there was nothing. We had to relocate over lockdown, and by the time we came home he lost all his words.

But since then - even after devoting so much of our time to research, and 'early intervention' - it is like we lose more of him each day. He is now aggressive, unpredictable, miserable, he bites me, scratches me, spits at me. I can't take him anywhere by myself because he wants to be carried, and if I go somewhere he doesn't want, he just head butts me or rips my hair out. He is very physically able.

We have paid privately for many hours of speech & language, OT, and we attend a charity for autism weekly - I've done the earlybird course, and over 50 hours of various course from behaviour strategies to sensory integration - nothing has stopped the decline.

I can't say this in real life, but I feel like I am grieving the little boy he was - I love him fiercely - but I feel like I am losing more of him every day, and I have no control over it. I can't bear to watch videos of him before - it is like a completely different child, and I am struggling to accept that there are no answers.....

Thank you for the kind and thoughtful responses, I'm very touched - thank you.

I know I need to come to accept the new reality we find ourselves in. It's just every night now I spend sitting with my son, trying to get him to sleep while he bites & spits at me - I do love him, but I feel we are never doing right by him. I feel abused most of the time. I'm currently trying to tie my hair, so you can't see the bald patches where he's ripped it out. I just feel there is nothing to look forward to anymore, I can't go out with other families or friends, and I'm completely isolated.

Hi my son is 11 almost 12 Autism adhd , moderate learning difficulties and extreme challenging behaviours . Although my son hasn’t had any regressions I still grieve for him as our life is completely controlled by his disabilities . He is 2:1 at school and with carers . I’m struggling on my own and residential is sadly on the cards now 😞

That sounds really hard. I hope you and your DC get the support you need.

Huge hugs, you will adjust and life will become normal again, just not in the way you had planned in your mind. It's a very difficult diagnosis and it sounds like he may be at the more challenging end of the spectrum but you are doing everything you can to support him. You sound like an incredible mother. Xx

The early years are so tough
It was always hard seeing family and friends whose children are developing typically ,things are a lot better now ,for us ,my son is still severely autistic and has severe learning disabilities,but he did calm down when he started ( special) school we had to.learn to embrace the new life (I don't mean to sound twee) as I said meeting friends who are going through similar has really helped me .

This sounds so hard op, no advice just support

This. A friend of mine is going through this with her son. Her son was 7 when he suddenly started developing various traits on the spectrum - tics, Tourette’s, acute anxiety, a host of behavioural issues - it was bizarre and there’d had been no signs of anything like this before. As far as anyone can tell, the child’s immune system overreacts to an infection resulting a neurological condition that comes and goes. In my friend’s case her son had a chest infection that they believe triggered it. There is a support group for PANDAS and some specialists in the UK but because it’s relatively new, it’s not yet widely recognised.

My son was diagnosed just as he turned 3. I know people hate saying severe or mild, but my son was at the hard end of the spectrum. There was zero doubts by anyone ever. He was developing nicely until 18 months when he just froze. He went to a sen nursery, a SLD school. Strangled his sister at age 6, threw his car seat at me while I was driving age 4. Run off countless times. Non verbal until 7.

He is 11 now. I take him to a mainstream karate class and a children's physio who's son also attends was shocked to hear he goes to a sen school or was diagnosed at 3. So was the only other parent i told there. He is, always has been and always will be severely impacted by his ASD. But he narrated his school Chrismas concert. He blends in a mainstream clubs. I never ever dreamed he could be this person he is today. So never right your child off. There was no luck in his development. But neither has he ever been forced or made uncomfortable. Things change

ypu Should have a social worker. I would ask them for respite urgently . This sounds unmanageable with no support . I’m so sorry this is very very tough x

I mean respite as I. Someone taking your child out for periods of time. Not overnight unless that’s what you wanted x

Oh OP, I can hear the pain in your words.

It’s completely normal to feel grief for the child you thought you had for 15 months.

One thing jumped out at me. Do you have any support from other parents with children with ASD? In my area there are several groups which run courses, webinars but the social side is very important. It can be so isolating with a child with disabilities but if you find a group of Mums like you that can help enormously.

I wish you all the best. My DS has also had a similar trajectory, but has always been verbal. His behaviour has been so challenging in the past. He was at a Special Unit at Primary but mainstream secondary is too much for him. He’s 15 now and is kind and thoughtful. He is starting to have a couple of friends and he is starting to be invited out by others, finally.

All I’m trying to say is that as children grow and develop and although none of us know your child, don’t be surprised if there are positive changes as he grows up.

Right now though it sounds like you need rl support. I do hope you can find it.

I feel exactly the same @BreakdownInevitable. My Son is 3.5 years old. He has only recently received his diagnosis but we have known that he is autistic for around 18 months. We have been having Speech & Language input (not as much as I would like) but to no avail. My Son also gets very frustrated, bites, head bands, scratches, grabs at arms and faces. It is so incredibly hard. I feel so sorry for his Sister, most of the time he is unaware of her presence. The rest of the time he is screaming at her or trying to lash out. I know how hard it is, you are not alone.

Unfortunately it's not as simple as that,it all.takes time and assessment,s and there are long waiting lists even if a child has been accepted for respite .

Been there,done it, still doing it.
Feel free to message!
I wish I said it gets easier, it gets different, but still very hard.

Sending you love, OP. We had a different sudden transition with my son. When he was 18 he had his first psychotic break, and we had to try and begin dealing with a huge shift in .... well, everything. I had (and have) lots of thoughts and feelings that I punished myself for.

It is not wrong for you to be grieving as you are. None of your feelings are wrong. They are deeply wound up in your love for him. xxxx

I’m struggling too. Our 7 year old is waiting for an asc assessment, is likely to have adhd and is also pretty much incontinent. I’m constantly stressed, our marriage is pretty much in tatters and I dread getting up in the morning. It’s just not the life I imagined.

We have little support from family or friends so I’ve referred us to scope for some support. Might be worth a try.

I can relate to a lot of what you have said OP. My DD is 5 & her behaviour can be very challenging. We have started to come to the realisation that she is probably autistic. There hasn’t been a regression as such but certain things don’t seem to be getting any easier. I find it really hard & isolating socially. A lot of people just see it as bad behaviour & judge our parenting. Also since she is waiting to be diagnosed I find people very dismissive. I have found a few allies with Sen children & am hoping to find more. Sorry you are going through this.

Hi op, I know how you feel. I’ve had a this exact same thing between both of my children. One has autism the other has adhd. I’ve also been scratched, punched, bitten, hair pulled out and objects thrown at me. No sleep at night ever for the first 4.5 years of my son’s life because he used to scream all night and come in my bed and attack me.

The early years are usually the worst for any child due to the tantrums, aggression etc, but those tantrums are generally magnified by children with autism which makes it even more stressful.

I presume your ds is still at nursery? I did find that once both my children started primary school and the school days were longer, and they actually had to do some ‘work’ rather than play and paint pictures all day, that they managed to settle into a more normal sleep pattern as they were knackered by the time they got home.
I also find that primary schools do a good job at being able to help nip a lot of the behaviour in the bud, along with the fact that your child will be growing up and learning how to communicate on a better level. For me it did not get rid of the problems altogether but it certainly reduced them.

Depending on where your DS is on the spectrum will also impact on their behaviour and way of navigating the world.

I just wanted to say thank you for this post OP, you've put something into words I've been struggling with since DS was born. All through pregnancy I just expected him to be a regular baby then when he was born it was very clear that he had problems that we're still learning the extent of. I've been depressed on and off since and never could work out why but now I understand that it's because I'm grieving the child I thought he was and the life I wanted him to have.
I don't have any words of wisdom but solidarity from the same boat.

“Grieving is not the problem, it’s part of the solution. It is an unlearned, self-sufficient process that helps us to move from the past to the future, from inaction to action… from shattered dreams to more purposeful dreams based upon who we really are and what we can create.”
~ adapted from Ken Moses

I just wanted to share this with you. I am also the mother of a child with ASD. I really like the work of Ken Moses on grief and shattered dreams.

It is absolutely OK to feel sad and grieve the loss, its a process that we can move through and start to build a new dream, new thoughts about the future.

It is hard OP but you will be ok.

I get it op. It happened to me and my little one too.

It's not just about mourning the child you thought you would have, the life you would have if they were 'normal'...

You literally saw your child's personality and .. soul .. taken away from them. It's gone and will never come back. What's left might be just as treasured but you saw that child who existed die and it is unbearably painful. I suppose the closest analogy is Alzheimer's claiming someone... one day that person just isn't there anymore and the grief for them and their future is overwhelming.

My five year old is profoundly autistic, likely has a learning disability and ADHD. He has two chromosomal abnormalities that contribute to this. While he did have a mild regression, he has always been very, very delayed in meeting any milestones. He was also born very prem.

At each point I've grieved for different things and at one point I had to unfollow on SM certain friends with neuro typical children. My jealousy levels were unreal.

I found this bit of writing helpful for both myself and for explaining to others what our lived experience is:

"Welcome to Holland - By Emily Perl Kingsley

When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport.
Only when you land, the stewardess says, “WELCOME TO HOLLAND.”
You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY.”
But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay.
“BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!” you say. ‘I DON’T WANT TO STAY!”
But stay, you do.
You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.
The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned.
It’s slower paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts.
But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.”
The pain of that will never go away.
You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss.
But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland."

I'm going through this too.
I can't give you my experience as I don't think it would be helpful to you at this moment in time (my son is a 23 year old in body. His development froze as a one year old baby).
I am having flashbacks to when he was the age of your DS, and currently breaking my heart.

One thing I would advise in hindsight is please make sure you have counselling therapy early on. I feel if I had had this at the time, I wouldn't be where I am now.

I’m not sure if this will helpful or not, but my mum says I lost my speech/sounds around 2ish. They did come back, she did it all herself as well because this was the early 90’s and no one would listen to her nor diagnose me. I can vividly remember learning to speak again around Y3, so I must’ve been 7/8ish.

He may regain his speech is what I’m saying, but if he doesn’t there is tons of resources out there for you. And I mean you and your mental health, don’t neglect yourself in all this. It’s a hard and lonely road to walk.

I would 100% recommend therapy. I used it when I was first diagnosed and trying to come to terms with everything.

That helped me at the time of my son's diagnosis, but now I just find it depressing.
I have a big folder of my own poems and letters I have written to him even though he will never understand the words.
He's an adult now, frozen inside his head as a one year old baby.
I miss him so much.