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.....

My son is almost 24, and I still haven't reached that stage of acceptance.
I've started therapy.

Even though I have never heard his voice, I just can't get it into my head that I will spend my entire life having never had a conversation with him.

I see those he started off with at toddler group, now young men living their lives to the full - careers, relationships, independence, freedom..... some have even become fathers.

Life is so unbearably cruel. I miss him so much and what we might have had.
He seems particularly lost and distant at the moment, and I have no way of reaching him.

You've tried it or you can't get your head around it? There are many parents in that group that talk about how well their asd kids have done, which speaks for itself.

It is bullshit. It is quakery. It is pseudoscience.
People who peddle it are snake oil vendors praying on the most vulnerable.
Autism is a neurodevelopmental disability. Any "professional" claiming to cure it is, to put it bluntly, a cunt.

I prefer to listen to the hundreds of parents on there that talk about their children doing well on it. Can't argue with what parents see and live with in their asd children even if you don't understand how it works.

You are grieving and that's natural and perfectly normal Be kind to yourself.

OP, I'm so sorry you're having such a difficult time with this.

My child was diagnosed at 4 and began to regress at 3yrs old, particularly around toileting and aggression/emotional regulation. It's been tough and in the early years I laid awake at nights deeply saddened by the challenges life will throw my child because of their autism. I've cried many times, fearful for their future, because people can be cruel and excluding.

What you are experiencing is not unreasonable at all. You had dreams, hopes and wishes for your child and with a diagnosis like this it cannot fail to muddy your view on how life may be for your child. It felt like a form of grief to me. I went through a stage of sadness seeing families raising their children without the barrier and challenges experienced by our family. It made me angry too and I worked through it with a great counsellor. I needed that emotional bandwidth for my child and not allow myself to be consumed by the injustice of it all.

Whilst we've had more than our fair share of challenges with our child we are so very grateful that they came into our lives. They have enriched our lives beyond anything we could have expected, they've shown as a side to life we never would have seen and our emotional development and understanding of human beings has deepened to a level we never thought possible. We literally thank our child every day for showing us who they are because they've enabled us to grow as people. My DH is also autistic with a successful engineering career and that has really helped our child believe that they can do anything with the right support.

Give yourself time to process this. It will be a unique journey for your family but there will be support all along the way from other SEN families who understand your challenges and organisations geared up to support you and your child. Accept as much support as you can because you will make lifelong friends and will discover a new world you never knew existed. You may also experience a seismic shift in the priority relationships in your life as people adjust to your new normal but don't panic, it's part of the natural process.

I'm sorry you're feeling so sad but you will find days filled with joy - your little boy will still give you those moments. 💙

Just a thought - if the parenting course is in person it is a really good opportunity to make friends with those in a similar boat. Even if it's online, it's worth going into it with that in mind to see if there is anyone you might click with and could keep in touch with over whatsapp or whatever.

There is no substitute for friends who really get it who are going through similar things.

Thanks for your message. I can tell you it gets harder before it gets better,
but luckily in our family,s case things have got better. Person is now 17
and the violence has stopped, has made a friend albeit on the internet.
Sleep disruption still bad but it doesn’t really cause to much of a problem as they do not work. Integrating a little more but prefers younger children as they don’t bully as much. I prayed for a miracle for years and I’m so grateful for this change. It makes life a little easier for all the family. I think puberty was hard but after that is definitely much better.Good luck.

It has been validated, here and in the states. 100%
Gt Ormand St has a specialist.
Need to get yr facts correct.
There is a blood test that can give a guide as to whether it may be Pandas or not.
To be honest symptoms very much the same as ADHD Autism and similar.

My daughter had her ADOS assement when she was 5. She's now 14. She used to be the happiest, giggliest, cuddliest little girl ever, with a wicked sense of humour. Then one day she just changed. She was gone, and in her place I have this abusive monster who screams and swears at me almost 24/7. Wants to lose her stutter, but refuses to do the exercises the speech therapist gives her. Refuses any help really.

I wish I could say it gets better, I really do. But - there will be moments (we've had two the past 5 years), when you'll see that happy little child again. You will hold that memory in your heart for the rest of your life, but unfortunately it also increases the sense of loss.

I feel for you OP, I really do. Huge big hugs from me.

I'm sorry not to have been more responsive - but I am reading all the messages, both on the thread and private - thank you so much.

It's been a rough few days, DS bit his key workers face badly today - and I just feel so, so awful. I am so sorry for her, but also feel so judged and that DS is simply a problem at his current setting - he is moving to a specialist placement in September, but I had hoped he would stay on for a day a week at his current placement for continuity, and because he loves it - but they've as good as said they don't want him.

On top of this, I have lost two thirds of my hair in the past few weeks, it's become so noticeable people have commented. I just feel I am turning into someone I don't recognise, my confidence in my ability as parent, at my ability to do my job, and in myself is completely gone, and I am so lonely.

In answer to a few questions:

I have been part of SEN playgroups and parent groups, but DS' hyperactivity have meant we have always struggled to be able to interact with other parents - it's a constant cause of anxiety for me that he will hurt another child.

The parenting course is 1:1 - but unfortunately I can't take the time off work in any case, I've taken so much already - and am at serious risk of losing my job. I've already been given an 'inconsistent' rating at my latest appraisal.

I also acknowledge how defeatist I sound - I find myself irritating! I am just very low at the moment.

One positive - I have self referred for my work place counselling scheme, so I hope that brings some peace.

The specialist placement sounds like a positive step. I'm so sorry that you are so worn down and stressed by all of this. Sorry if I've missed it in previous posts but who do you have helping you out? Husband? Partner? Parents? It sounds as though you are absolutely burnt out. Unless the parenting course is specifically tailored to dealing with SEN I would just rule it out. You need a break, not more information/ strategies. Can you get signed off sick at work for a period? I am sure your GP would sign you off with stress. Any chance of finding a lovely childminder specialising in SEN to give you a bit of a break. Easier said than done I know! I think the support you need now is whatever will give you some respite. It's the oxygen masks in the plane analogy. You need to take care of yourself before you can take care of your DC. Hang in there. x

Grieving is not fixing the problem though
Just makes it worse.
It means that you are sad of who he is instead of dealing with who he is

And the carrying him needs to stop asap. You are going to injure yourself and then you are even worse off

Yes - my DH is really supportive, but works in a demanding job with long hours -he does take our son out, but when he does it's just me on my own trying to make our house the least bit presentable - we don't even have a TV, as DS has smashed the last 2. The strain on our marriage is hard - we haven't slept in the same bed for 2 years, as DS needs one of us with him. We barely see one another in any meaningful way - as we just tag team with DS.

Other than that, I just have my Mum left and she has dementia - I see my brother every 4 months or so, and he is very supportive when we see each other.

I can't get signed off work unfortunately, as I am a freelancer.

I know that carrying DS has to stop -but it just means we can't go anywhere, we've been working with the disability team for 18 months on this. And sadly he won't use a buggy, it causes a meltdown.

I know I sound hopeless, if I were reading my thread I would want to shake me.

OP, most people will understand your feelings in sen groups around safety, it's why we watch our kids more than parents of NT kids (not being critical, it's just how it is). My DS needs more help in social interactions too so I can't just have a coffee at softplay. I have to be right there but other sen parents do get it. We get why DC can't just sit still and draw. Why they race around and won't follow instructor led activities. Honestly, playgroups used to be a nightmare for me before DS was diagnosed. Sen groups have been a lifeline. I've met some amazing friends that way who totally understand my DS and my parenting style!
Also, when you're ready, come and join us on the mn sen boards. We're a friendly upbeat bunch and it's good to know others sharing your journey. I know it sounds corny but it works!

When DS was small, he was very much in his own world. I would get to his level and copy what he was doing (usually playdo or lining things up). He thought it was funny and it gave me a way in. To be honest, it sounds like you're both totally burned out. We had a v similar situation after trying mainstream school. Just try following his lead about what he wants to do for a few days. Copy and play in parallel with him. This might help to build your interaction again. Also, kindles are great for ND kids and their parents sometimes, to regulate ourselves. Chill out first, then build on the rest.

@BreakdownInevitable no one here wants to shake you we understand how hard it is. You're doing a great job in difficult circumstances.

Your hair loss might be due to Telogen Effluvium & can be caused by all sorts of things - illness, stress, hormones, thyroid.

There's no treatment but it might be worth talking to a GP & maybe getting a blood test for thyroid levels or iron deficiency which can cause hair loss.

It does grow back, takes its own sweet time about it, and the shedding can be horrifying to go through
I had my hair cut to shoulder length - my straight hair had a bit of a spring about it when it was no longer weighed down & as the hair is shorter, the sheds no longer look as dramatic when you're leaving long hair everywhere.

Try to make sure you have as good a diet as possible, take a multivitamin, lots of protein. There are some very good support groups on Facebook.

Wishing you all the best

I have zero knowledge of this condition, but I happened across a video the other day, talking about a study in to the diet of children with certain conditions like this. They ensured that their diet contained no additives at all, they ate only a fresh clean diet (no e-numbers for eg. you'd need to check the ingredients of everything), and iirc, drastic improvements were seen in over 70% of the children.

Like you said you have zero knowledge of the condttiond
Autism is a Neuro Developmental condition ,it's also a huge spectrum
I can see why certain changes in diet ,might help a little with behaviour
But drastic improvement,s ??

Just saying what I watched. I doubt the documentary was making up it's results.

I would be sceptical,plus again its a huge spectrum and how it impactsd people varies massively.

My youngest DS was diagnosed mildly autistic 2 years ago. While I was relieved that he wasn't "just naughty" and there was an explanation for the things he struggled with, we used to cling to the hope that one day, it would all magically "get better" and he would "grow out of it". To have it medically confirmed that this was him, this was his life and he wouldn't grow out of it was really hard to hear.

Previous posters are right, it is grief for the child you will never have and I think honestly, rage and resentment at the unfairness of the cards you've been dealt. Be kind to yourself, your feelings are valid.

In the short term, can you try to increase the fun, pleasant activities and minimise the stuff he doesn't want to do? Just to make life a bit less of a struggle?

Sending you love and hugs xxx

I agree, no one wants to shake you! It does sound like you have, or are approaching, burnout. Do anything you can right now to lessen the physical and mental load, let go as much as you can and just try to go with the flow and take care of yourself first (as much as you can). This may be a particularly bad phase but there may well be light at the end of the tunnel in terms of your DC getting a little older and more mobile, the specialist placement etc. and you need to take care of yourself until then.

It also definitely sounds like you need more practical support. Can you afford it (and of course if you can find one) a nanny experienced with SEN? We found an amazing childminder who just had my DC for short periods. Even though she wasn't trained in ASD etc. she just had a very calming and natural way with him (she was older than me and very experienced with children generally) and could just be with him while he played etc. and I could go and sleep/rest/go and have a coffee etc. A few hours a week made a huge difference and she stayed with us part-time for 8 years.