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.....

I suspect there is more going on, but we've just had our third rejection from paediatrics - we've been referred by nursery, by our HV twice but are just told they are not seeing children already in receipt of a diagnosis :(

You are grieving - for the child you thought you would have. Having a child with a disability is alien and not predictable - you'll have ups and downs, frustrations and deep love.

With our son, I describe it as going into a tunnel - it was dark, scary and I didn't have any understanding of his condition, didn't know if he'd even live more than a few years. I was too scared to ask some questions because I didn't feel ready for the answers.

At some point you will come through the tunnel and then you are out of the dark. You'll start to ask questions, understanding what direction your son is going in, how to help him. You'll become an expert on him, you'll know what helps, what doesn't. The professionals will start telling you about progress and you'll tell them you've already noticed that he is doing it at home.

It will be hard sometimes, you'll cry, but you'll also value small steps, the child he has become that you didn't expect in the first place, but that brings you laughter. He'll be quirky and different but that's not bad....it's different. You'll be a better you - tolerant, understanding and you'll have hopes for him.

If it's any help, I told myself I could be upset, I could be annoyed but I had to move past it because (to be blunt) it wasn't about me, it was about my son.

(He has a life long learning disability, ASD, ADD, 4 types of epilepsy, lots of physical issues but he works part time and, I'm the proudest Mum in world. We don't think he'll be able to live independently, but we solve problems one at a time).
💕

I am very uncomfortable with all the posts talking about autism being “cured” because it’s not really autism, it’s PANDAS, it’s mycotoxins, it’s heavy metal poisoning, etc etc.

I have two autistic kids and guess what? They’re autistic because there’s a whole lot of undiagnosed autism on both sides of the family, going back generations.

OP, genuinely, I am sorry life is so tough right now. I hope that life will improve as your child gets older and communication (in whatever form that may take) improves. You do have it harder than almost all parents. My husband and I joke that we live life set on “hard mode” and our kids have low to moderate support needs.

I hope you manage to get a place at a SEN school and not mainstream.

From your struggles you can post kindness, thank you, it says so much about you.

Although I didn't mean to post for your kindness, I just wanted you to know that what you are saying isn't wrong, that it is completely valid that you feel like that.

Sending strength. It’s tough. We all have such hopes and dreams and expectations for what motherhood will entail. I think about all those parents who have experienced a massive change of plans - SEN, serious illness, even things like food allergies - and I remind myself that there is so much support and empathy out there, just look at this thread. Doesn’t life have a way of reminding you you’re not in charge!

I am autistic myself and I have grieved for childhood me who was struggling. I wasn’t diagnosed until adulthood but my parents have struggled with the diagnosis too. I don’t think it’s necessarily (for me at least) grieving the diagnosis exactly but more so grieving for what could have been and how life could have been easier. You’re not unreasonable at all to feel how you do.

Hi op, I’m sorry if this has been mentioned. Please google Pandas. It resonated reading your description. It might be that your DC’s change is treatable. The NHS is behind in recognising it, so you may have to make your voice heard.

I feel your pain. My dd has autism and adhd and the older she is getting the harder it is becoming. I love her so much, but I am scared for the future. I have no advice, but know that you are not alone. Have you applied for an ehcp and DLA? Might be worth looking into before he starts school.

Yes, we have an EHCP in place (appreciate how lucky we are) - but it feels meaningless - unfortunately any amends we tried to make which we felt might make a difference were rejected. We do receive DLA.

I have been where you are. A doctor was so rude to me when I started crying in a community paediatric appointment, she told me a good mother wouldn't be this upset and would do what they could to support their child. I was supporting him but I was struggling with the fact my life had been flipped upside down. A play worker at the hospital saw how upset I was and was so kind, she said it's ok and healthy to grieve for the child and future you thought you would have, it doesn't make you a bad mum. I think of her often and how much comfort she gave me in that moment.

I have an autistic son too, it's tough. I found this book really helpful "Marching To A Different Beat" by Sarah Ziegel. The author has 4 autistic sons and writes with honesty about her own family and their journey. She has lots of practical tips as well as advice on dealing with schools and getting her boys the help and education they needed. You can buy it from bookshops and Amazon.

This poem sums up how I felt quite well.

I think it is a perfectly valid response to grieve the child you had before his skills regressed, and to grieve the child you thought you were having. Allow yourself those feelings- they’re neither right nor wrong. Are you in any support groups? Whilst hard to go to, they can be a lifeline and offer invaluable support.

I say this as a parent to a child with many additional needs and who may be very clinically vulnerable- only time will tell. I definitely grieved for the baby I had thought I was having when I received the postnatal diagnosis. Very normal/valid, and common response.

I think there is still so much about Autism we do not know.

Some people with Autism show signs of Autism since birth, and there are others that are neurotypical (regular to most people without Autism) at birth but then vastly regress as toddlers.

From your post I believe as a carer you are not receiving enough support. You need to make sure you look after yourself as well.

Trauma can present itself similarly to autism. It sounds like he's had a fair bit in his life already with moving house and nursery etc. It might be worth looking into that? I worked with a boy who was very aggressive and whilst he did eventually get a diagnosis, a lot of it was also trauma from so much upheaval in his life. I'm so sorry you're finding things so hard, sending you a big hug xxx

Echo the other posters - be kind to yourself. You’ve had a devastating shock. I hope you and DS have lots of support. I’m sure other posters will be well placed to signpost and give advice.

I hope things get easier for you both. Hang on in there.

My DS is almost 8 now. He's amazing but he has required a radical shift in our parenting to get him to a point where he likes himself. I wouldn't change him for the world, the autism is a part of who he is, and I'm only realising that more as time goes on. The hardest thing is watching how hard everything is for him: big family gatherings, any change however small, getting freaked out by things that are red (because red always equals danger to him). He had a fire drill at school and worried for months about there being a fire. He finds friendships virtually impossible.
But (and its a big but)...he has the most fantastic zany sense of humour, makes up all these incredible stories, draws amazing characters, laughs with me over silly cartoons, dances and sings. He can write now, and read,his maths is amazing. He trampolines and loves the cinema. He still can't really pedal a bike, but we'll get there. In his own time.
I felt enormous relief when he was diagnosed at age 4. Relief that I wasn't going mad, that there was a reason why usual parenting methods weren't working. But there was sadness in there too. I worried that he'd never really speak, or ever be able to control his anger. But slowly, with the right support, he can, mostly.
My advice would be to surround yourself with likeminded parents. Get on your local sen parents fb groups. Find any local support groups. You're likely going to have quite a different journey to most patents, I found finding sen parents a lifeline.
Consider a specialist school. My DS was so disregulated and couldn't cope in mainstream. Now he's properly supported in special provision, we are seeing his happy joyous self again.
Be prepared to parent in a way that supports him. Look into PDA and cooperative parenting strategies, anything non hierarchical, lots of compromise. The trick is to let him feel in control within parental boundaries.
You've got this. Remember: he is the same child. He's also most likely very frightened at how he's feeling and he needs you to anchor him through his big feelings.

It's perfectly normal to be worried about the extra challenges will face. My son didn't have a regression but it was clear that he was different by around 12 months but I didn't know anything about autism. Life is difficult when I see other little boys same age as him chatting and laughing with their siblings and I feel sad for his older sister. But he's gentle and loving and so sweet everyone falls in love with him even though he mainly prefers his own world and company.

You need to grieve and acknowledge that your life will be different. There is no shame, weakness in this. I think nearly all of us with children with a disability go through it. I told myself I was actually grieving an imaginary future though which helped.

Be open to and curious about your child as they grow and you will find ways to parent. There are so many places to find support now too. It may well be 'extreme' parenting but there will also be achievements along the way. Parenting by 'consent' and PDA techniques have worked wonders here... and situations can change dramatically in surprising ways, not all negative.

There was a thread not long ago where a mother was asking whether there were ever good outcomes for children with ASD with many needs and there were many positive stories by parents further down the line. Will try and find it.

https://www.mumsnet.com/talk/am_i_being_unreasonable/4769024-a-positive-story-about-your-child-with-autism-please

OP, I could have written your post 17 years ago when my son was diagnosed at 3. If I could go back in time now, the one therapy I would focus on would be Intensive Interaction. My son has severe learning difficulties, epilepsy and some challenging behaviours, but Intensive Interaction turned him from a boy who shunned interaction into someone who seeks people out, initiates engagement and has a great sense of humour. Google Phoebe Caldwell and Dave Hewett - there are lots of videos on YouTube. It’s not expensive and it’s not hard. It didn’t cure his autism but I really feel it brought my son back and made him ( and me) so much happier. Do please DM me if you want to talk further. We also use something called Positive Behaviour Management which works really well.

Please ignore this post @BreakdownInevitable . His diagnosis is nothing to do with you moving house or nursery. This is not down to you. Autism is, more than anything, down to genes. It's hard-wired, it does not have a psychological or experiential cause.

Hi, I have 2 DC with similar presentations to your son and one had a massive regression aged 2.

We also, when they were about your son's age, had an Early Help assessment who did the suggesting a parenting course thing, which just crushed me.

I too, like your posts, am so hard on myself but I couldn't help when reading what you've written that you need to cut yourself some slack! If you read back what you've written and imagine it came from someone else - what would you say?

Do you have any short break schemes near you which you can access without social care for now?

Yes, ignore, I've twisted myself into knots thinking I've traumatised my child. Autism is mostly genetic and moving house will not cause neurodivergence.

Yes, be very careful with ideas about trauma and other causes... as this feels like the new 'refrigerator mother'. I know too many cases of parents told their children had attachment disorder for instance who were later diagnosed with ASD/other neurodiversity/other conditions.

It seems that ASD is hugely heritable and we now have more genetic drift too where people with neurodiverse traits/families have children together. There may be environmental factors for some of course and PANDAs is interesting (if there was a very rapid onset of symptoms and usually at a later age rather than a regression in early life).

It is difficult not to get into ideas of 'curing' but in many cases this is really just unresolved guilt or a refusal to accept neurodivergence which makes me incredibly sad.