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.....

Please report and or remove if this is not helpful - TW "curing" autism/ADHD by treating mould toxins and gut issues (very controversial) Also, I haven't RTFT.

There's some suggestion that mycotoxin poisoning (as well as gut issues) can mimic the symptoms of autism. One case study saw a child with autism symptoms cured when they treated him with Icatronazole. Here's the paper - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7572136/

I realise this is controversial and many do not believe autism can be in any way cured with meds currently available but the paper was published in the NIH/NLM website. I googled its credibility and got this:

"The National Institutes of Health website is a good place to start for reliable health information. The Centers for Disease Control and Prevention website is another one. As a rule, health websites sponsored by federal government agencies are accurate sources of information."

When you say the problems started when you moved away - the toxin in question is often caused by mould found in housing. Could your son have been exposed to mould in your other house and could his autism diagnosis be questioned on that basis?

You can do a Mycotoxins test privately through Great Plains Laboratories. I don't know if the NHS can do one. I gave up on them when I got cancer and needed to address my problems quickly. Some of my own ADHD symptoms improved significantly when I treated my gut issues. They are still very much there and some are not improved at all but this surprised me so I wanted to share as I wasn't expecting any improvement in that area - I was told ADHD was not treatable but it's possible I had ADHD plus other conditions that mimicked ADHD on top of it. I wonder if your son might be in a comparable situation.

Sorry - ADHD was not curable and it hasn't been a cure for me but some of my symptoms have improved without me taking ADHD medication.

I have no advice OP but I can hear your pain and how raw this must be for you. I am so sorry- I wish I could help.

I agree with therapy- it would give you the space and time to get your feelings out and to process them, its so important you have the opportunity to do that.

Wishing you and your son all the very best x

I don't have personal experience of autism but do have several close friends with autistic children. One friend's child is completely nonverbal but he does communicate. He knows how to read and write, and uses a device to help 'talk' to people. He is a bright, funny, lovely little boy. His mother has told me that it is an extremely long marathon with autism. I would never presume to understand your grief but perhaps think you are expecting too much too soon even with all of the best interventions. Please do not give up hope. My understanding is that regressions happen but children can become communicative again, albeit perhaps in a different way.

No. Mine was caused by a severe sickness bug that I contracted in early pregnancy, which could easily have been avoided if I had taken time off work at the time to avoid it. My first scan showed he was small for dates.

His development was normal until a year old. He was smiling, reaching for his toys, and then it was as though a light had gone out.
It was heartbreaking seeing him drift away from me before my eyes.

Hi op. I don't have any usual practical advice, but you sound like you're a phenomenal parent and advocate for your child. Be gentle with yourself and know that you are doing your very best because you are. Hang on in there.

Im so sorry
Nobody can prepare you for the sadness, anxiety snd grief. It doesn’t get better, you just learn to live with it and it becomes your new normal. There will be chronic sorrow, but also chinks of light along the way.
Theres a whole thing about ‘special kids choose special parents’ etc but it’s mostly bullshit and it can feel incredibly unfair. Please allow yourself those feelings without judgment and get some proper support

You should be able to say it in real life OP: it’s ok to expect the world to understand that you need to grieve what you had.
my town has a phenomenal SN parents group - a bit of a model really. They hang out and support each other. I wish a similar group for you.

Just sending a big hug from one mum to another.

I've not read the whole thread because I'm in a rush, sorry.
But it's ok OP. He's still your little boy, but he's just struggling.
My DD was very aggressive, but now, age 18 she's doing great.
Two things helped me,

1. the poem, "Welcome to Holland"
2. the book, "The Explosive child."

It's really really hard to parent a child like this. Do you get DLA money? That helped me cut down on work.
Be patient with him, and ignore all the stupid 'advice' you get from friends and relatives. Find another ASD mum to be friends with. If not in real life, there's plenty of us on here. :)
Good luck!

Hi op

i want to say I’m sorry you’re having a tough time at the moment. It’s really difficult. My daughter has an asd diagnosis (and adhd) and one of the things I’ve found really helpful, and from your op I think you might too, was leaning about pda- pathological demand avoidance. It’s either seen as a trait of asd or a whole subcategory (like Asperger’s was). I find when my daughter is regulated (taking account sensory needs) and demands are managed/kept low enough for her she manages everything so much better.
fwiw my daughter was a happy chatty “typical” baby too. It was only with hindsight/comparison to her younger siblings I can see there were (a few) signs

The Russians I believe, or it may be all Slavs, have a name for children with Down's Syndrome, something like "sunshine children", because what they add is sunshine to people's lives.

OP, outside the diagnosis of autism, has there been anything that has changed in the life of your young son? Was medication given following the diagnosis? Was there something to do with lockdown or even covid? Because sometimes when you just look at the hard FACTS, almost like Poirot looking at a problem, things appear different and it is easier to find the main "issue" causing things.

Empathise, similar age, stage, regression. Truly hoping DD will soon learn some communication / self regulation that can help in all areas I guess. Everyone says this age is rough.

try to draw on support and get pockets of time for yourself, so so needed x

I third this. Please do read the symptoms and case studies of PANS PANDAS. It is mis-diagnosed as so many different things including autism. It’s an auto immune disease triggered by infection that causes brain inflammation and dramatic overnight changes in a child.

I have an autistic child and 4 was a very difficult age for him. I researched it at the time and there are some big hormonal changes at this age for boys which can make them more aggressive. Lots and lots of physical activity helped, he had a scooter which he was frankly frightening on. I just had to try to let him go off with it (in a safe environment of course). Trampolines, swimming, building sandcastles, being outside and running around as much as possible. It did pass, and he calmed down. To be honest its never been that easy, lots of heartbreak over the years. However now in his teens he is lovely, has friends and doing well in school, so please don't despair, they find their way.

My son died when he was young. I have grieved and still grieve.

However never feel that you can't grieve for the child and the life that you thought you would have. No one would choose to be on either of our journeys, please look for real life help and support, it is the only way to get through it.

💐
have you had his hearing checked? Progressive hearing loss can lead to similar behavioural patterns.

The only thing is that there was quite a lot of upheaval for him - we had to move close to my Mum to care for her during lockdown 1 - so he left his childminder & nursery - then we moved back again, which is when the regression started. I go over and over in my head - I sort of need a reason if that makes sense.

I'm so sorry - that loss is incomparable. x

That sounds so tough. Has he had a thorough health check? Could he be in pain? Is there something physical going on too that is undiagnosed? My DS had severe sleep apnea and it has a terrible impact on his health, mood and behaviour. Don't just pin it all on the autism. Sounds like you are a very determined and informed mum. Stay kind and compassionate even when you aren't feeling it. Best of luck xxx

Had not has! He's doing well now.

We tried, and he was sedated for the tests - but 2 doses of sedative didn't work. However, he seems to be able to hear the rustle of a crisp packet at 200yards, so I think his hearing is ok. x

Thank you - yes, a lot of people have suggested that poem - it is lovely, and I love the sentiment. The only problem is that it feels for me it should read 'Welcome to Aleppo' or similar.....as there doesn't seem to be much joy to be found in this reality at the moment.

I'm just reading the lovely kind messages - thank you so much.

In answer to some questions, we now live very rurally and I don't have any friends locally - the SEN parent groups I have found nearby run on weekdays, and I work, all my leave is used to cover school holidays, and any time my son's 1:1 isn't available, so meet ups just aren't a possibility at the moment. I'm already clinging for dear life to my job - as I've had so much disruption because of my Son's unmet needs.

We have just had a social care assessment - and they suggested a parenting course. I wanted to burst into tears at the suggestion. The implication is that DS' behaviour is my fault. But I've also done so, so many courses and none have come close to addressing the issues we encounter. They also only run on weekdays, so I'd have to take more time off work - and I have no time to take.

I feel like I now fail at everything, I'm a useless mother, terrible at my job, my house is disgusting - DS doesn't sleep & I never get a moment to clean, I dread anyone calling. I can barely recognise myself when I look in the mirror. Even the very rare occasion I see a friend or my family, my focus is on my son, and what might be happening with him, the anxiety is insurmountable, and I no longer want to go out, I have nothing to talk about apart from the struggles we face.

I see pictures of my old group of friends out with their children all together, out for picnics or on the beach, dates with their partners, celebrating their children's achievements, and I feel so bitter, lonely and ultimately so sad for my DS. I literally can't see where we will find joy in our life.

So sorry for what you're going through, OP.

DS was diagnosed with ASD aged 4 and ADHD a couple of years later. But I can't really relate to your story because there were always signs, even if we didn't understand them at the time. He was a happy baby but we thought he had colic, he would be grumpy every day around 5pm until bedtime. He needed constant stimulation and couldn't be left alone without lots of toys. His language was a bit delayed, and it became obvious that he wasn't responding to commands, or acknowledging his name etc, as he reached toddler stage.

He wouldn't toilet train until he started school, and he would not hold hands or use a rein, so he was a nightmare to go anywhere with. He would have meltdowns if we didn't do what he wanted. He stimmed a lot and had echolalia - reciting TV shows and books perfectly. Classic symptoms.

I won't lie - the toddler and early primary years were very hard. I did grieve massively for the son I and DH had hoped for - and thought we had for the first year maybe? But we did know quite early on that we had something else going on. But ten years on he's mid teens - and while he may never go to uni (because his brain doesn't work in an academic way) - he is the loveliest boy ever and I wouldn't change him for the world! All the childhood issues (violence, meltdowns, aggression, poo smearing....) seem a dim and distant memory.

Please don't feel too upset - I'm sure you will be amazed at how far your DS can go, and how much things will improve over time. Wishing you all the best .