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Desperately worried about my daughter

15 replies

Superhanz · 10/09/2022 02:40

Hi, I'm unsure if anyone can give me any advice or whether I've even posted in the correct place. I'm a mother to a wonderful 10 month old girl, she's our first after 8 years of infertility. My pregnancy was a massive surprise and because if this I was on medication up until the second trimester and had to be weaned off.

I first noticed there was something up with my daughters eye contact after she had an MRI and they had to put her under general anesthetic at 3 months old (we had a real scare with her health but it turns out she has a neurological condition that if congenital is totally benign but it can be caused by some very serious illnesses). The next day her eye contact was 'off'. She suddenly wouldn't look at me.

She did a lot early, rolled at 3 months and would cough if you asked 'have you got a bad cough?' She would sing along with me at 3 months when I was singing which she only did for around a week or two, and she only rolled a couple of ways each time then didn't roll again.

Her eye contact is a strange one, where she'll make eye contact but can't maintain it and sometimes she's smiling and making eye contact and suddenly she'll looked panicked and she'll quickly look away. Other times she'll just fully avoid it, she hasn't made eye contact during feeding since 3 months old and she'll turn her head if you try to look at her face on.

She's always been a very placid smiley baby, smiled at 4 weeks and laughed early too. She gives me huge smiles every time I smile at her. She has been responding to her name since 5 months but will turn maybe 75% of the time. She's been waving since 9 months but she still hasn't quite grasped it and will randomly wave and the odd time she'll do it properly even when she's not prompted. She'll sometimes cough to get our attention if we aren't giving her enough bit other times I'm not sure whether she'd care if there was anyone else in the house.

She was late to babble, not much before 9 months but now she babbles often. She doesn't play typically with toys, she just touches and rubs them and puts them in her mouth, like, if I show her the ball drop toy she won't try to copy me. She has never mimicked any facial expressions or noises, she doesn't wave, point or gesture to be picked up but she will sometimes hold out her arms for me if someone else is holding her. She feeds well but her sleep has always been awful and she likes to cuddle at night.

She has no separation anxiety but does prefer me to other people. If I leave her in her playpen she won't seek me even after half an hour, today I felt like she couldn't have cared whether I was there or not.

She doesn't crawl, or pull up to stand but she sits well. This week I've noticed she's started to smell her books and certain other toys she likes, she also has started wriggling her fingers in front of her eyes. She's always scratching surfaces or touching something, I know babies do this but she is next level, it's really excessive. She twirls her wrists, ankles and wriggles her toes all the time. She doesn't attempt to jump in the jumparoo or won't bounce if you hold her to stand though her legs are strong.

I'm a worrier by nature and my heart feels sore right now. My nephew (sil step son so not a blood relative) has high functioning autism so I'm aware it's not the end of the world. But, my fears are if she's showing many signs before she hits 10 months will she be severely affected? No-one else has really noticed anything but DH and I.

I'm finding it even more difficult because I'm pretty sure it was the medication that caused this and her other neurological condition. I love her so much and to think that my selfishness has caused her harm is so painful, I don't even know how I'm holding it together.

She's been seen by opthalmology so there's nothing wrong with her eyesight. I'm sorry my post is so long, if anyone has managed to read it til the end could you offer some advice or just a hand hold, I really need it right now.

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Badmm · 10/09/2022 09:03

Hey! Have you spoke to your health visitor about your concerns ? It is really early to make any diagnosis of autism I have an older boy with autism but his wasn’t picked up until he struggled socially. But with my baby who is almost one he is very similar to your little girl he Also twirls his wrists and ankles, doesn’t respond to name, some eye contact but he also does this like side eye looking thing. He also has gross motor delay and can’t sit or weight bear. I would try and get the health visitor to assess your dd and try and get your referred to the relevant services x

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Superhanz · 10/09/2022 19:10

Thanks for getting back to me. The health visitor who did her 9 month review at 8 months wasn't concerned. I think because her eye contact can fool people, it's quite well disguised unless you're really watching her like a hawk to see the eyes quickly dart away, or you hold her up to your face and see she won't look at you. Also at the time she wasn't really late for gesturing, they they are just becoming late now and some of the other gross motor skills. When I initially rang about her eye contact concern they just said because of her age it will be a wait and watch thing anyway. Can anything be done now? I'm ready to fight for her if I have to. X

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tasteslikeburning · 10/09/2022 19:34

Hi OP, absolutely you can start early intervention at this age. My son, who is 4, has autism, so I have started early intervention with his 5 month old brother using the techniques and strategies outlined in this book: www.amazon.co.uk/Activity-Babies-Toddlers-Risk-Communication/dp/146252091X/ref=sr_1_3?crid=24FXXVENWJ54A&amp%3Bkeywords=the%20activity%20kit%20for%20babies%20and%20toddlers%20at%20risk&amp%3Bqid=1661937762&amp%3Bsprefix=%2Caps%2C62&amp%3Bsr=8-3&tag=mumsnet&ascsubtag=mnforum-21

Definitely not saying that your child has autism - very early to say so - BUT if she does, then starting intervention as early as possible as you can is best. The techniques in this book are all about social communication and are very easy to implement in day-to-day life, they are probably mostly things that you are already doing, e.g. peakaboo, singing, tummy time activities, etc.

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Superhanz · 11/09/2022 23:47

Thanks so much for your suggestion. I've bought the book and am currently reading through it. I was feeling so helpless with the 'wait and see'. This has really given me hope that I can help her with things we can do at home.

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LightTripper · 12/09/2022 11:22

I think most of the things you can do boil down to noticing what she is interested in and trying to join in or find ways to help her do that in slightly varied ways (e.g. if she likes the visual stims, maybe getting some toys that give her more variety in ways of doing that). So kind of getting into her world IYSWIM, rather than just going by what is "developmentally appropriate".

Another book we used when DD was small (not as small as yours so I'm not sure if it would have useful ideas yet!) was this one:
www.amazon.co.uk/Activities-Children-Aspergers-Processing-Disorders/dp/0071623361/ref=asc_df_0071623361/?amp%3BlinkCode=df0&amp%3Bhvadid=310973726618&amp%3Bhvnetw=g&amp%3Bhvrand=13629775332867111727&amp%3Bhvdev=c&amp%3Bhvlocphy=1006886&amp%3Bhvtargid=pla-518194053757&amp%3Bpsc=1&amp%3Bth=1&tag=mumsnet&ascsubtag=mnforum-21

Nurturing Neurodiversity YouTube channel is good too - some useful videos here (though she's more active on Instagram these days):
On things to do in the limbo phase:
Another video on things to do that I really like - it really gets into core principles of building engagement:
Some more specific activities to do at home: https://www.youtube.com/playlist?list=PLbjLeX_GUAhBp8YA4-JDlBzPdSWnbAGb_

It is a worrying time when they are so young. FWIW although I saw nothing at the time (I knew nothing about autism) DD did show lots of traits like this early on (but was also smiley and liked spending time with us etc. - but no pointing to show things to us, no waving, rarely responded to her name, though engaged with us in other ways). Didn't ask for things. All her first words were nouns/labels rather than conversational things. Very late to pull up to stand and walk (it was via physio services that we ended up at an autism Dx when she had just turned 4). She's now 8 and doing really well. Very active and fit (rides a bike etc. despite her proprioception/interoception issues). Fine at school (some sensory issues and gets anxious about new things but manages well - massively advanced reader, really good at science, and does fine in English and Maths), has friends (happier in her own company than some of her peers, especially the girls, but is sociable and joins in football and other games the kids are playing, and involves friends in her ideas too, and seems to do fine in team activities at school - but then when she's had enough she'll grab a book and go off to read). There are challenges but it's really overall a nice life for her and for us. I know you know this because of your nephew, but please try not to assume anything in terms of what her experience will be like - or yours as parents. I do realise this is massively easier said than done!

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Superhanz · 18/10/2022 03:24

I'm just giving this thread an update as it's so frustrating when you find a thread like this and never know the outcome.

I just read back my post little over a month ago and my daughter has come on so much since then. She waves at the right times and without prompting, she claps and has done since 10 months, she started crawling a week before 11 months, she can't pull up yet but is certainly trying. She's started to play typically with her toys like the ring stacker or ball drops. Her separation anxiety kicked off big time at 10 months and she cries after me if I leave the room. She tries to feed me and her teddies, will lift toys, bits of fluff or anything she gets her hands on to show me.

She's still not talking so no mama or dada, no pointing and I can't be sure if she follows a point. My concerns are still the eye contact and lack of speech and pointing but she has come on leaps and bounds since my last post, I was actually shocked when I read it back as I didn't realise just how much she'd learnt in so little time.

I'm grateful for anyone who responded and I used some of the techniques/books suggested to help her along too.

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LightTripper · 18/10/2022 09:26

That's great! She sounds really happy and interested in the world which is brilliant. It is amazing when they do a developmental "leap" like that. It often seems to follow a period when you couldn't really see much going on at all!

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Mamai90 · 20/10/2022 01:52

Yes, @LightTripper today I think she might have pointed to show me something. We were at soft play and she pointed at a little girl who came into the area we were at. I'm not 100% sure if this was a coincidence but she does seem to show me everything she gets her hands on now so I guess this is a good sign.

It's good to know that you're daughter is thriving, she sounds like a happy little girl. Thanks for the nurturing neurodiversy recommendation, I've been watching some of their YT videos.

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poppet131 · 10/02/2023 17:25

@Superhanz How is your little one now? I’m a bit concerned about my son’s lack of eye contact but he’s only 3 months old and hoping it’ll get better

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Superhanz · 23/03/2023 21:24

@poppet131 she is doing great. She's 16 months old now, she's not walking, shes days off first steps I'd say, she maybe has 20 words but seems to learn a new one every day! She started pointing at 11 months, crawling at 10.5 and clapping her hands from 10 months.

Her imagitive play is great, she pretends to feed me, everyone who passes her in a cafe, all her teddies. She brushes their teeth and shushs them to sleep, pretends to make me tea etc. She copies me, shows me her toys, wants me to watch her etc. She's meeting all her milestones and scores 2 on the MCHAT which is considered low.

She still doesn't maintain eye contact for a long time and she does smell literally everything and still really likes certain textures and will rub them. So I'm watching and seeing how this develops, I guess my main concern would still be eye contact but since she's meeting all her milestones I'm just enjoying her.

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Boymama123 · 07/04/2023 18:02

Hiya! Please could I ask if your daughter still twirls her wrists? My 8 month old son is constantly twirling his wrists and it’s worrying me :(

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Boymama123 · 07/04/2023 18:13

@Superhanz Hiya! Please could I ask if your daughter still twirls her wrists? My 8 month old son is constantly twirling his wrists and it’s worrying me :(

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Donutsandtears · 22/06/2023 11:12

@Badmm and @Boymama123 how are your babies now? My 9 months old constantly twirls his arms (hold them outwards like a scarecrow, everyone said it’s odd :( ) and lots of other stuff like rubbing, constantly moving, easily irritated etc… just looking to connect and seeing how others are coping xx

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Boymama123 · 23/06/2023 12:29

@Donutsandtears Hi! My son is now 10 and a half months, he still opens and closes his hands and sometimes twirls his wrists, but this has really lessened recently and he only seems to do it when he’s excited. We had our under 1 review today and the health visitor said it’s really normal and just a way of them showing excitement/emotion, and not to worry about it. She said if he does it in a more obvious way or if it increases when he is around 2.5 they would look more into it; but the fact she was very unconcerned reassured me. Hope that helps.

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Gingerface90 · 05/03/2024 15:11

@Superhanz did your dd stop twirling her hands? My ds is 7.5 months and sticks his arms out like a scarecrow all the time and wiggles his fingers. I’ve become obsessed with it

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