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.....

You're not alone. My dd suffered a big regression around 4, blamed on another health condition. Subsequently diagnosed as autistic nearly ten years later. There were traits but there wasn't any learning difficulties or cognitive issues prior to the regression. The regression was like she suddenly incased in frosted glass. She was there but she was different and everything was harder and the spark had gone.

It took me a long, long time not to grieve the past. I was constantly looking into different reasons and pushing doctors to tell me why it happened. I couldn't look at old videos because it destroyed me. It was hard to get health professionals to even acknowledge that the regression had happened until they eventually did cognitive testing.

It's only since she started high school that I've accepted things. She is an amazing kid. She is so happy and upbeat despite her difficulties. I think that once it got to the point that she had lived with the regression longer than she hadn't, it got easier, if that makes sense.

What I will say to you is be kind to yourself. Do not beat yourself up for feeling like this I felt such guilt at feeling these feelings. I adore my DD but it felt like I was somehow betraying her when I would long for her to be how she was before the regression. That is natural. Maybe talking to someone would help?

Hi, not sure if this would help but I have a semi verbal son (he only really started to learn to speak at 3 and I found behaviour so hard as I think much of the aggression I got from him was due to his inability to talk. So if I picked him up and went a way he didn't want - he hit me. Now he can explain.

A friend of a friend writes an amazing blog about a speech device which has hugely changed their lives with a non- verbal child - would that help?

Her blog is on Facebook - Monty, me and AAC

I learned so much from her

No one wants to shake you, you sound absolutely burnt out. I know it's easier said than done but I think a bit of respite could make a big difference. You need to rest if at all possible.

Hi OP, I have been reading all of these posts. My DC are in the 'milder' spectrum but I still find it very hard to watch him struggle. Social aspects and emotional regulation is awful atm due to the anxiety moving to secondary school. Please take care of yourself.

It is worth considering some other diagnoses though.
At age 7 my son overnight developed a huge outbreak of multiple tics, coughing, anxiety, skin rash and other behavioural changes. I had dropped him off at school in the morning and he was fine but by the time I picked him up his eyes were rolling, he had a head tic and he was behaving in a manner totally unlike I had ever seen him. I took him to our local doctor who diagnosed him with rapid onset anxiety, Tourette’s disorder and an apparently unrelated skin fungal infection. He gave us an anti fungal cream for his skin and referred us into a neorologist who gave us two options for the tics - a wait and see approach or neuroleptics. Within a matter of weeks my son’s gait had changed and he didn’t want to sleep alone as he said aliens were going to get him. I cried constantly as I was so worried about the rapid progression and how he would survive school life. This went on for months and I just couldn’t believe that overnight he had changed so much.
I took him to a number of doctors and one paediatrician thought he may have PANDAS. This was 15 years ago and I had never heard of it. She referred me on to a paediatric specialist who ran tests and found his titers to be off the chart. He worked with Tourette’s, PANDAS and movement disorders. He prescribed 6 weeks of antibiotics as he truly felt that this was a classic case of PANDAS - the change was unbelievable. My son was back. Over the years he had a few more outbreaks but a course of antibiotics resolved it. Now he is 22 years old studying at university, swimming competitively and with a great group of friends. He has the typical teenage issues but they are different to my early worries.
I very much agree with you and do believe most cases cannot be ‘cured’ but it is worth considering alternatives if the change is sudden and dramatic with multiple symptoms as occasionally there is something else going on.
I don’t want to suggest there is a ‘cure’ and all children are wonderful and unique in their own ways anyway. We dont want to cure children but if there is an underlying health issue that can be treated it should be considered.
i hope I don’t sound insensitive as that is definitely not my intention. I just want to share an honest account of our experience

How are things a year on @BreakdownInevitable x

I’m so sorry to hear this, I think I remember this post.

Just before hand had anyone in the family or your son had a Strep / throat infection?

check out PANDA / PANDAS, I have heard of similar from others exactly the same. Strep can start this condition. There is a FB page with parents in a similar situation to you, might be worth joining to ask more.

WFO recognise this condition but the NHS do not, so you will need a blood test to confirm arranged privately.

I have two non verbal asd with extreme developmental delay one with adhd and all I can say is one is coming up 6 and is FINALLY getting easier but the others coming up 4 and just constantly screams flaps and makes a mess constantly!

Literally wakes up screaming and is over all extremely hard work! So I do know what your going through but it DOES get better!

I’ve been getting horrific panic attacks and I’m on propranolol I think that’s what’s called for a few weeks now and it’s been a life saver! Xxxx

@BreakdownInevitable would love to hear how you are all doing now?
It made me so sad to read your post