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.....

a refusal to accept neurodivergence which makes me incredibly sad

I agree @Grimbelina

Nothing will convince me that the explosion of PANDAS as a pseudo diagnosis in recent years is entirely driven by parents of autistic kids in deep denial.

There’s a reason it hasn’t been validated by the medical profession.

Should say ISN’T driven, obvs.

My son was verbal until the age of 3 and then he totally stopped he regressed alot with communication he also has autism, I noticed though when he wasn't able to communicate no more it made his behaviour worse just like your explaining, he now attends a SEN school where he gets 2 weekly sessions of speech and language and he's actually just started to put a couple of words together he's now 7 so it has been a slow progress for communication, but honestly don't beat yourself up about it I totally understand what your saying I felt alot of what your saying x

ASD is painted as this thing where kids are locked inside themselves and just grunt.

It's just not true x Your child is clearly struggling with having had to relocate and has gone non-verbal. Think of him as being like an injured kitten. He's scared and overwhelmed, can't communicate verbally and is just continually frustrated so it's coming out as aggression and biting.

When mine got ill in their teens, we had an age of aggressive mutism. Now I have a chatty kid again...

Invest in non-verbal communication such as picture cards and invent your own sign language. Weirdly use as few words yourself as possible. Offer simple choices of A or B. I'm lucky that I can communicate using GIFs or little notes but pictures can do this. If you're offering a sandwich or a drink, he can then point to the picture and you don't need to say anything either.

It's hard to explain how difficult it is to go outside at first. His schedule sounds horrific. So much going on. If you consider that one hour of OT might take a day at home to recover, then you can imagine how full on this is going to feel. One thing to help is to use cards to give a timetable for the day so he knows what's happening and at what time... So Breakfast at 8am, then Leaving at 0830 to get to Appointment at 9am etc.

Autistic people have a range of intelligence so it doesn't mean he'll be super intelligent or have severe learning difficulties. The same range is true of all the elements of ASD. He may be ok with noise or find it terrible. Some like twinkly lights, some hate them - ASD folk vary just as much as neurotypical ones!

You know your son and you will be his best advocate, and know what he needs. Trust your instincts. Feel free to DM me for support.

Hope YOU are getting support and of course hope your Dc is too - it is so so hard - DgC have issues and it’s heartbreaking watching my Dd battling to get help in Ipswich - just feel for you and your Dc - sending you so much love xxx

You aren’t alone.
I grieved the child I lost to autism and various other disorders.
Youwill come out the other side stronger, just hang in there.
My son was 8 when he was diagnosed and is now 23, I still wonder what he’d of been like had he been neurotypical, but he is who he is and we love him regardless ❤️

Sorry you are going through this. 💜

I don’t have any words of experience but just wanted to say feel what you feel and maybe get some therapy for you - some headspace and a safe place to talk through your loss of why you’d expected.
Do you have any other children and if so how does he interact with them?

I can’t comment on the speech recognition but we did go through the physical attacks from my son, only aimed at me and mostly so when I was pregnant, he did all of a sudden stop but we went into lockdown and then the meltdowns started and moved on to lots of arguments. I also feel at a loss most of the time and he’s not as bad as others are and I feel guilty for struggling when others have it worse.

I completely agree with everything @Grimbelina has said too.

I think you sound amazing, you are dealing with an awful lot. Please please don't take the parenting course suggestion as anything other than the standard basic offering of an LA with no money. I promise you it says nothing about your parenting whatsoever.

Yes some medics, say it could have happened after strep throat and antibiotics.
Has your son had many Infections ie. ears nose and throat, tonsillitis, adenoids, scarlet fever ???? Very hard to get to see somebody unless you go private. Nhs CAHMS useless
Need blood tests and a neurological expert. I believe Gt Ormond St has a doctor/consultant who deals with Pandas. Think would cost approx for first consultation, bloods etc approx £1500-£1750. Their is also a Pandas website which is very good. First try and get Gp to do a STREP A blood test, most wont.
You then would present this to a consultant and he would do one to compare.
I think it’s the amount of “titers” that can indicate if there is a problem or not.

OP, your posts I could have written myself. We had early intervention from 2.5y, we saw another huge change around 4y (when stimming and delays were compounded by aggression). Now we're almost a 6y and it's still hard. On the one hand going to preschool has been wonderful, and we are seeing a lot of progress and tolerance for new things and new skills, though he is still very delayed. But at home, I barely feel in control at all.

I think I felt grief at 2.5y. And it was ok in a way because of covid when he wasn't missing out on anything. But now that everything is back to normal, and there is SO much we can't do, as a family, or just me and my husband, or me with friends. It breaks my heart a lot.

I think what I do grieve are the friends he is not making - he desperately wants them but he can't communicate his wants and needs. His rough play alienates them - they don't want to play with him. We tried to make play dates with other SEN kids but that was also too hard, they just didn't rub along well, and it was so hard to coordinate with the parents. I'm desperate for him not to be alone, and want him to have a sibling, for us to love and for someone to love him, but I worry about the burden he will place on them, and also it is quite likely that a sibling would be autistic too.

But most days I can't grieve at all because I'm just too tired. I know it will get harder as he gets bigger and stronger but I can't think about it yet because it's such a struggle to get through the day. I think what makes me most sad is that although most of the time I can be calm and gentle mummy, I am not the mum I want to be because I'm too angry at him for not listening, too fearful of how he will react, and spend too much time on my phone so my brain can escape. We do celebrate the little happy moments, the tiny progressions, but they are very few and far between.

OP I'm sorry, I can't say that things will be better. But I hope I can offer some comfort that you are not alone.

I’m sorry to hear this, did he had a sore throat / strep b infection you can remember before he changed? If so have you heard of PANDAs? You may struggle with GPs on this as NHS are still looking to accept this although it is widely accepted elsewhere.

If not, and in no way anything official, but I have heard of children’s autism “starting to show” around lockdown.

wishing you luck.

@BreakdownInevitable I know exactly how you are feeling and I can totally relate. My son was diagnosed as autistic at 4 years old when he was at Nursery. He’s now 20 and 6ft 2 strapping lad! 😊.
When we got the diagnosis I broke down in tears hubby was the strong one that held it together for all of us. I kept thinking that I had done something wrong, was I being punished for something (a mum at the nursery told me it was because I didn’t breastfeed and that I gave his mmr vaccine!). But like you I went through a grieving stage, my son is here but not here. I felt sad for all the things he wouldn’t achieve or wouldn’t be able to do. and to this day I still have those moments as he has just left college and he feels lost at the moment trying to
figure out what his next step is. Things will get better. My son probably won’t have a girlfriend or likely marry definitely no kids of his own but we are hoping will try to live independently in a few years time. Hope this helps a little.

What an incredibly eloquent post Mamma12637. It is very painful not being the mother you thought you would be (that is very familiar...). Finding ways to bear this (the one wise observation that stayed with me from therapy) along with all the other challenges is very hard indeed. I hope you find a way.

Why do so many children, and adults, have autism now? I can't think of a single person at my school who exhibited autistic traits. Why is it now so prevalent?

What you need is an advocate. My son is much the same way, except I am a SAHM. Not a happy one, would rather work, but this is the place we are. Plus, my son wouldn't stay dressed and started biting the teachers, so he was home for weeks before covid shutdowns and then that happened and here we are. I literally can't work. We barely got him a therapist, much less childcare. And the cost for a center, after the years longs waiting lists, would have been all my pay plus some of my husbands.
Get as many resources as you can. don't even think about guilt or anything. Demand, demand, demand. I had to go to like 4 places before I found a clinic that would send therapists to my home to help with communication, behavior, etc. A big help was teaching him the PECS system. You don't have to use that per se, just print out some pictures that are for things and start teaching him what pictures match what things in your home. I didn't catch if you said he was in school or not right now, but they should use that in school as well. I would not push talking, personally. I know some therapists do, but I found gentle therapists. They don't do any of the pushing and forcing like stories have been told about. Like, when he is aggressive, it is all about changing the environment to calm him and keep him safe and not about changing what he is doing. Because you can't, he has to stop. So, I have pillows and blankets for him and his own chair just for him. chewies for his mouthing, If he tries to scratch or pinch me during therapy, I get up and move and we offer him his PECS book to remind him that he has a better way to ask for things.
I have small safes to put my glasses, phones, tablets, etc in. We bought a cheap projector instead of a TV because he kept breaking it. We put a door on the kitchen with a number lock to reduce eating of too much and to block off the back door since running off is also an issue. We also put a number lock on the front door, though he did jump out the window one time.
But, everyone is different, he may need some or all or none of these things. But you need someone or a group of people to find you services for him and you and for help.

Couldn’t agree more with this. I’m surprised this keeps coming up on this thread. It reminds me of the theories about why people develop cancer & how it can be cured by doing this, that or the other.

Because not everyone with autism presents in a typical way. So unless you have a lot of experience in the area you wouldn’t necessarily know that someone in your school or work place had autism. You wouldn’t know because a lot of people, particularly girls with autism mask their symptoms. I think there is also more awareness of autism now in the same way there is more awareness of mental health conditions. Hence more people are getting diagnosed.

There's a Facebook group called effective autism treatment that you can join. There are over 8k members worldwide. You'll find good info there.

Its OK to grieve OP. I found 4 to be the worst age with my DS in terms of emotional regulation. I remember having to remove objects from the back of the car as i had been repeatedly struck on the back of the head while driving - water bottles for example. By 5 he was like a different child, we always have our struggles but it was my hardest time as a parent and a huge transition from the life you thought you had.

I really feel for you. The move may have triggered anxiety which he is struggling to express. Instability and consistency may help, clear boundaries and lots of love. He sounds like he is really struggling and really needs you. As a practical suggestion are there Facebook groups for autism in children you could join for some support for you? Sending love and hugs to both of you x

Sending lots of love. I know the feeling. I feel like I have lost my DD a lot of the time. She used to be chatty and would make friends easily. She was anxious but it was manageable. Now she is 14 and struggles to speak, she can’t cope with school, she has no friends. She has OCD as well as anxiety. She seems so unhappy all the time. I see photos of her before she was 12 and she was completely different. It is hard to accept. And worrying. We have received no help, I hope you find it easier to access support.

Bullshit homeopathy.

I really feel for you as this is an unmanageable amount of stress. It sounds as if you could do with some therapy to help you manage as these are really complex feelings and you need to be able to accept them without feeling guilty. Your son sounds like he needs some help too. Can you write to the Dr who diagnosed him? Explain about the steep decline and ask for a referral to a play therapist. The parenting course is not designed to judge you. It is to give you strategies to help manage your child’s behaviour as parenting a child like him is very different from parenting the one you describe as having before. It’s a bit like thinking you can drive a classic manual car straight away having only ever driven a brand new press but to start and stop automatic. It’s not impossible but different and requires a bit of training. Be kind to yourself.