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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Feel like I've lost my child

159 replies

BreakdownInevitable · 22/05/2023 17:15

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.....

OP posts:
pictoosh · 22/05/2023 17:30

Ooooh gosh that is so hard. I can only imagine how painful this is for you. Your poor thing.

You are grieving. You're grieving for a lot. The life you thought you would have. The life you thought your little boy would have. Your sense of calm. Give yourself time. Cry if it helps. xx

OrdinaryWorm · 22/05/2023 17:31

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Bobbybobbins · 22/05/2023 17:34

Both my DS are autistic and both had big regressions just like you have described. Up to 2 my eldest had 'typical' development then lost all his speech in 6 months as well as regressing with behaviour. My youngest barely had any speech before he regressed and lost it.

The eldest started talking again at 4, the younger at 7 just has a few words.

All the best OP, it is a tough road.

Bobbybobbins · 22/05/2023 17:35

@OrdinaryWorm

Neither of mine had or have any digestive issues.

teacher45646 · 22/05/2023 17:37

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Please please please ignore this post.

Gooders1105 · 22/05/2023 17:38

Hi. I know exactly how you feel and it is all normal. You are grieving the life you thought you’d have and the little boy who had.
Are you able to have some counselling? That will help with the grieving process.
You now have a different life, not necessarily worse, but different. I found that once I let go of my expectations of what I thought my kids were going to be like, it did help.
Your little boy is still fantastic and you will get to know this new part of him and build the connection you had once again.
Big love to you and your boy x

tothelefttotheleft · 22/05/2023 17:40

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My two asd children both have stomach issues.

I haven't seen what's been recommended so I can't comment on that aspect.

chocolateisavegetable · 22/05/2023 17:41

Was it a sudden change? Any sore throats just before it started? If so, look at PANDAS - a condition that is recognised by WHO but is only just being acknowledged by the NHS

OrdinaryWorm · 22/05/2023 17:41

@Bobbybobbins I don't know enough about autism to comment further except to say that the microbiome is not necessarily linked to gut health in the direct way you seem to have inferred (same for MS in fact, which is autoimmune degeneration of the brain, but is 100% to do with gut health), and also that the film shows results on autistic children based on radical dietary changes which are very compelling. There is no one size fits all when it comes to health and anyone battling a chronic health issue needs to become as well versed in the gut as they can. Sending hugs x

saraclara · 22/05/2023 17:47

Let's not have this thread hijacked by that gut post.

OP, I'm so sorry. I taught children like your boy for many years and have worked alongside parents like you. You're at the hardest stage right now, but if it's any comfort to you, the parents I know came to a point of acceptance and loved their kids for who they had become (and looked back far less) with time.

I wish you well along that journey. You're doing all the right things, and I hope you're getting the support you need.

x2boys · 22/05/2023 17:49

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First of all.it's a huge spectrum a and peop!e with a diagnosis vary, massively in how impacted they are and how it presents in them
my son has a chromosome deletion thought to.be the underlying cause of his autism and learning disabilities,no amount of gut health will.cause the tiny piece of missing chromosome to grow back .

Morganchristie · 22/05/2023 17:52

I hear you @BreakdownInevitable. My two children have autism and the youngest completely regressed and is very very challenging and difficult. Autism is their primary diagnosis but they both have other neurodiversities. It’s really hard. I know other people have problems with their kids but it has completely changed our lives. Outside of school, the kids are unable to leave the house without high levels of support and we’re limited to where we can go.

I would recommend a specialist buggy for your son.

Like you, I did so many courses, we did so much therapy all the name of early intervention. Looked at gut health. The fact none of it really made a difference left me feeling really helpless.

It is a difficult and lonely road. I’ve found even within the specialist community, there’s a divide as unless you have a profoundly affected child, some people don’t get it.

I love both my children but my youngest through no fault of her own has caused me a lot of sadness. Especially as a mother, I struggle because I can’t make her life better. Not for want of trying though.

cansu · 22/05/2023 17:58

I felt very similarly. In fact I remember having panic attacks. The only thing I can say is that the feelings lessen and you will find ways to deal with the cards you have been dealt. The best advice I can give is to seek out real life support and friendship from parents in the same situation.

x2boys · 22/05/2023 18:02

BreakdownInevitable · 22/05/2023 17:15

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.....

I think its normal to greive,for he child you thought my would have my son is severely autistic and has severe learning disabilities,,I'm 13 years in now and have come to a level.of acceptance ,but the early years were very hard
the thing that ,s helped me more than anything is now having a group of friends who.all have children with disabilities and totally get it.

Emelene · 22/05/2023 18:06

I don’t have much experience in ASD to offer but just wanted to say you sound like an amazing and very loving Mum. Be kind to yourself. Flowers

MsWhitworth · 22/05/2023 18:06

I think the biggest thing is to know it’s ok to feel like this. You are grieving a double loss - the life you thought you were going to have and the life you wanted him to have. Don’t beat yourself up by thinking that you shouldn’t be feeling this way.

Like any grief, you will get through it and accept it and cope but it’s important to let that process happen. Hang tight.

georgarina · 22/05/2023 18:10

Good luck OP. This happened with one of my siblings - regressed completely, aggressive, nonverbal, destructive - and they are now an extremely high achieving, happy, loving 20 year old in university. Take one day at a time x

Lucydoddledoo · 22/05/2023 18:13

Hi OP. I've been there, done the grieving. 3-5 was SO tough for us. Ds1 is now 6.5 and I'm seeing glimpses of that wonderful little boy again. He's tough. So tough. But when he smiles it's so beautiful.
Prioritise rest, recovery and tag teaming childcare.

Baneofmyexistence · 22/05/2023 18:17

My DD doesn’t have autism but she was diagnosed with Down Syndrome at birth. Grieving the child you had seems to be completely normal to me. I grieved the baby I thought I was getting and the life I was going to have with her. I can’t offer any advice but I hear you and your feelings are perfectly valid and normal.

CrumpetsandJammmm · 22/05/2023 18:17

It’s not wrong to feel grief. Our 12yo DD has quite suddenly gone from being just a “quirky” girl to everyone realising she is probably autistic and has been masking for a long time.

I empathise. I’m proud of her for talking openly about how she feels and engaging in educational therapy. I’m relieved that we may get a diagnosis that will allow her to access support through school. But I can also admit that I am struggling with the realisation. The girl who seemed to be sailing through school and friendships was probably a myth, and I worry about how she will navigate school and the world of work as she gets older. It is a sort of grief, along with the shock, as it has all happened (or happened for us, not her) so quickly.

I hope you get access to support and find your way through these feelings.

Lwrenagain · 22/05/2023 18:21

@BreakdownInevitable may I send you a private message? X

HowDoIGetThisThingOff · 22/05/2023 18:21

I had therapy, which was really helpful. It gave me a safe space to say all the things I needed to say, to someone who listened emphatically and wasn't emotionally involved in the situation.

Original poster
BreakdownInevitable · 22/05/2023 18:25

Lwrenagain · 22/05/2023 18:21

@BreakdownInevitable may I send you a private message? X

Of course, please do x

OP posts:
Didtheythough · 22/05/2023 18:26

I don't have the direct experience of having a child with autism, but your post is so eloquent its heart wrenching to read. Nothing about what you feel sounds at all unreasonable and I hope you can open up to someone in real life.

Mariposista · 22/05/2023 18:31

Be kind to yourself OP. You have been dealt a very unfortunate hand in the card game of life. I hope you have RL support.

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