Hello all, am a first time poster. My daughter turned 4 years old about 6 weeks ago. Just prior to this, her excellent pre-school told us they thought she needed a Special Needs Assessment. Her Dad and I were initially quite shocked as she always seemed developmentally ‘normal’, if not advanced! They mentioned things like her motor skills (can’t ride a trike, hates slides) and lack of interest in the other kids - but also said her speech and language were ‘amazing’ and her imagination was wonderful. They said she appeared to be interested own world, loved to line things up, didn’t want to do any work. I knew they were implying ASD straight away. To be honest we weren’t convinced, we thought that as an only child who doesn’t know a single child outside of nursery, we had mollycoddled her (always putting her coat on for her etc) and with a bit of work on this and some play dates she would be fine. She also struggles to write her name - she gets distracted and draws all over the page! But she can do it with a real effort and direction, and we thought as a leftie she was just taking her sweet time!
After some reading I realised she did display some traits - although she was super chatty and interested in the world, she would struggle with a reciprocal conversation - ie. she would just tell you about her favourite stories / cartoons and you would be oh so interested! But she wouldn’t ask about your day or thoughts, although she did have a good sense of humour and would actively mock us! She was only 3 after all. She would make up songs and stories, and liked to play alone a lot, but she was role playing and chatting to her toys while doing so. She spent lots of time with adults and was so well behaved with good manners, most of the time! But was awful at sharing with her baby cousin and would literally push her away. She held her poo in a lot when she was little (sorry tmi!) but we had got over this with a star chart and rewards. We started to come to terms that she probably had ASD but considered it to be relatively unobtrusive and at the milder end of the scale. Bear in mind she was still only 3 at this time.
THEN a week after her 4th birthday, she went in for a routine operation on her eyes (squint surgery) - we were told it was affecting her ability to concentrate and could be causing her headaches, and so we consented to the op. She has had a terrible time since. Long story short, she had 2 full weeks of sheer hell - hallucinations, psychosis, terror, extreme distress and screaming - we took her to A&E, the doctors, spoke to the anaesthetists...she was off her rocker and it was the most distressing thing I’ve ever seen in my life. My poor child.
This faded away and she would still talk about crazy stuff - but more nonchalantly. It is being investigated what happened but it’s possible she had a bad reaction to one of the drugs she was given. Then she had a period of being near catatonic, silent but also unreachable - she couldn’t understand what we were saying, and couldn’t give a *** anyway. She would burst into hot tears suddenly, and be unable to tell me why. I could not go to work this entire time, and she stopped speaking almost entirely. She then became very babyish, needing constant cuddles and love, wanting to be spoon fed, acting inappropriately, her language disappeared completely, which is so shocking as she was so good before. She stopped eating and lost weight.
Now she is having good days and bad days - emotionally she seems generally happier, however she has almost completely stopped speaking. She can go 4 days at a stretch with no words. Even when she does speak, it is very basic now, ‘yes’ ‘no’ and if you tell her ‘I love you’ she might say it back - if we instruct her to say good morning, she might on a good day. Very little independent speech, and no more imaginative play or bringing things to our attention. We had thought she had trauma, PTSD or similar - but she is now displaying so many odd behaviours we have never seen before - her facial expressions and the way she moves her body have completely changed. She looks and acts differently. She stares at lights, pulls odd faces, paces up and down a lot, growls, screams, has angry outbursts, holding her poo in again - she is like a different girl. The house is so quiet now, we are so sad.
The paediatrician we saw thinks she has regressive autism, and is investigating this. We are working hard to keep her occupied and happy and she does say the odd thing now. She seems to have regressed such a lot, it is really dramatic. However she sleeps perfectly well thought the night again now and eats like a horse again (she has an amazing diet and eats lots of varied foods, is a vegetarian.)
I suppose what I wanted to ask was a few things - does anyone have experience of a regression like this? It is so dramatic and as I say her facial expressions are different, and she is older than the average onset of 19 months for regression. Can she regain the skills she has lost, or are they gone forever? And does anyone have experience of this happening/ adverse reaction to general anaesthetic? The paed. described it as a neurotoxin and said it could have exacerbated things. I can’t stop crying on her bad days ( not in front of her) - I miss my girl and her chatter so much. I am due to have another baby in the next 10 days or so and am so worried this will make her worse, too. Any experience or advice please people, we are desperate over here. SORRY for epic post! x
Your darling little girl, is still your little girl. And I know you know that. But what I mean is. She’s experienced a trauma. Her little body has gone through so much and it just needs to rest. Recalibrate itself. She just needs lots of tender loving care. Allow her to be. Of course you have to take care of her but what I mean is, gently observe her, but not for signs of what is ‘wrong’ or milestones you think she should be meeting but for what she’s saying to you. What does she like. What is she good at. It’s difficult at times like this to think broadly and positively. It’s scary. But she’s gonna be ok. She is ok.
At 50 years old, I have regressed to the point where I wasn’t getting out of bed. It took me months, and I mean months, to even realise I wasn’t even barely getting out of bed, and longer to realise why.
My body is doing a superb job. It is shutting down my senses. It is giving me rest. We traumatise our bodies in so many ways but they are self repairing. They need only be treated with loving and tender care. You know how to feed the body, you’re already doing a superb job at that. Try not to worry. Her body is healing. It knows what to do.
She’ll relearn her skills like I’ll relearn mine. And bare in mind. When I cry. When I feel my emotions to the depths of my soul. It is no different from me being happy. They’re just emotions. Don’t feel sad for your little girl when she’s crying. She releasing her emotions, she’s expressing herself. You’ll get to know her, and she’ll get to know you. She’s a little shook up just now. We know how we feel when we’ve been shook up. We don’t think straight.
When I was 18 months old, I stopped functioning. They put me in an isolation ward for 3 weeks, they let me out once I started to function again and I caught back up.
Autism is very complex and it’s kind of mingled up here with the trauma of the operation and how her body reacted to it. She just needs to know she’s safe. I have honestly been like a baby many times over this last year. It’s not the first time, but the last 12 years have been pretty traumatic in many different ways and everything seems to have culminated in the last 12 months. Which has caused me to ‘regress’ or rather, it has caused my body to do its job. It’s self repairing itself. My job is to give the body the best nutrition I can, fresh air, exercise and loving tender care. And it will do the rest. We all process things at different rates and in different ways. You all need a little rest. Enjoy each other, before your new little one makes their appearance. Look after yourself. You’ve had quite the shock as well. Get yourselves rested and get ready for your new little one.
She’s eating and sleeping, which is great. And she’s having good days. She’ll have more. X
Hello Blue Ray,
Thanks so much for your lovely reply - and my apologies for being so late to thank you. The very night I wrote the post I was rushed off in an ambulance at 3am and had to stay in hospital on bed rest. I am home and well with a beautiful 10 day old baby now.
Well you have been so right - my daughter is slowly improving, mostly with her speech and is able to tell me a little of how she feels. She is quite frightened and angry and honestly, I’m not surprised. She continues to display challenging behaviour I have never seen from her before but it sure beats the sad silences, and must be a release for her, too. I am happy she feels able to express herself again. I am continuing to surround her with love and support and taking your advice on listening to her. I read your post while I was in bed before the ambulance, and I want you to know it really comforted me and gave me a good place to start.
i hope you too continue to heal and look after yourself. Thanks again for your kindness to a scared stranger.
Congratulations on your new arrival NAS35994 and I’m so pleased to hear that your little girl is talking a little bit more now. It’s so encouraging in so many ways and I just know the challenging behaviours will stop, in direct proportion to how much she opens up, which will happen more and more over time. You really are such a true gift to your little girl and boy, and it shows me that I’m on the right path. It will take some time, for both/all of us even though barely a day goes by without me making great strides forwards. They are mostly unseen and some I can’t even process, and apart from the times I am so overcome with emotions that I really am sad and scared, even in the darker moments, there’s still such strength in me which grows with every new realisation, which seems to come from the dark days, so even they are good, in retrospect.
My life is changing so much, although to the outside unseeing eyes, I’m doing nothing, not even leaving my house or even bed, sometimes. But they don’t see what’s really happening and even I don’t know what’s really happening, and I don’t need to. My life is changing in a way by where I’m moving away from all the crazy outside influences, into a more loving, kind and caring world, with different values and goals.
Your little girl will do that for you. I know how special she is, because I know how special you are. I would have loved to have been a different kind of mother, more like you, but that Love was in me, it’s evident in my son. So I’m accepting myself more and more and realising the unique beauty of all of us, and how we each can contribute, to a more loving world, in our own special way and usually, when we don’t know when we’re doing it.
Thank you for getting back to me and letting me know how you are. Please keep us updated and don’t hesitate to come on here when you need a friend. I’ve just realised, I’d assumed your baby is a boy?!?!? Your little girl is going to shine. She already does, it’s just maybe not so visible to everyone yet. You remind me of my friend who has a girl and a boy on the spectrum. The little girl has found she has a talent for and loves singing and you wouldn’t recognise the little boy from a few years ago. He goes to a special school and the little girl goes to mainstream. My friend’s life isn’t what you would call easy, but even she will tell you that her life has changed in incredible ways and she wouldn’t change a thing. Her mum is almost envious of her life, but she has also played a huge part in the little boys progress. It just took Love, support and patience and over time, they got into a rhythm, as a family, and they’re all thriving. The husband is also on the spectrum so my friend sometimes jokes about how life is, being the only nt in a family of nd’s, but she wouldn’t change a thing. I know she gets a tremendous amount of support, fun and friendship from a local autism Support Group for parents as well.
Take care and let us know how you all are, from time to time X