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Can anyone share their experiences? Please?

25 replies

Daisychain191 · 08/04/2020 08:24

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Talk Behaviour/development
Does anyone else's toddler do this?1
Today 07:53Daisychain191

My DD is 2.5 and she didn't really start talking til late. But she's now able to request things using one word, example being "juice" or "biscuit" but her functional language seems a little delayed still.
She's great at labelling things and has now started to label with two words, example, "blue car".

One thing she seems to do a lot of is copying her favourite TV programmes. She likes to say what the characters are saying at the same time as they do (she knows the words now after watching it a lot!) Sometimes she will act out things from the TV if we're doing something similar. She doesn't do it constantly but it's noticeable. I'm just so worried. She did point late too.
She tend to tip toe and flap/tense a bit when she's watching her favourite things.

She seems to understand what I ask most of the time too, unless I've never asked her that particular question before so TBF to her she wouldn't know what I was on about. She understands "where is...." And will either point or find the item. She understands to shut the door, can you jump/run, can you give "so and so" kisses or hugs Etc. She's very stubborn and has started whinging a lot and tantruming, moreso when she wants to play colouring games on the iPad! She seems to have such a good memory that even when I've distracted her from the iPad and she's fine... 10 minutes later she will remember and cry for it again. It's so hard with another little one who needs my attention too.

I guess I feel like a failure... And just need some support.

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Daisychain191 · 08/04/2020 08:25

Sorry for another post... Just desperate for someone to talk to about it. I don't know what's normal!

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Daisychain191 · 08/04/2020 15:31

Anyone?

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LightTripper · 09/04/2020 10:49

Hi there! My DD is autistic and sounds a bit similar: she tenses a bit/heel walked when she was little, especially when she's excited! She had a big vocabulary for her age but mainly nouns - didn't point or ask for things until she was older. Now her little brother is getting bigger I can see some social differences too (e.g. she never tried to wind anybody up on purpose like he does, or put on fake tears for effect!!)

I wouldn't worry too much about screen time. Is there any way you can try to make it interactive? Maybe find a drawing game that you could get involved in too? Does she like drawing in real life too? If so maybe you could mix some of that in? With the acting out of TV shows, would she let you get involved? DD was very into Winnie and Wilbur for a while, and we used to pick up sticks and pretend to magic things into other things like in the books/TV show.

2.5 and with a baby too is a very hard age even if everyone is neurotypical and understands each other, so try not to panic. Sounds like your DD has a good level of language and understanding, and things will get better as those develop more.

Try watching some of the videos on the "Nurturing Neurodiversity" channel on YouTube. So reassuring and sensible!


www.youtube.com/channel/UCYMO-0EyM0hcWL_KTl7HQjw
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Daisychain191 · 09/04/2020 13:53

Thank you so much for replying. When did you suspect something else was going on with your dd? I feel awful and worried in case I've missed something that I could've helped her more with.

She does involve me and let me have a go on the tablet sometimes. She likes to tell me what she sees a lot and what she's done. She coloured a boat blue so she looked for me to say "blue boat". She involves me quite often. When she's repeating things, sometimes she says it to me, sometimes she will just say it to herself but anytime that I get involved she smiles at me.
Bless your dd, she sounds so sweet pretending to do magic.
I have actually watched some videos but I feel like I'm so overwhelmed and don't know which way to turn. I just wish I knew what was going on so that I can support her better. Is there any chance it could be something other than autism? I can't really find anything because everything I searched for points to autism.

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dyscalculicgal96 · 10/04/2020 15:14

Hello!

Can you involve her or not? Try getting her to help you cook beans on toast for lunch or bake something simple like a cake or biscuits. Do not stress about too much exposure to technology.
This is a difficult time for all families. If she likes drawing, try teaching her how to draw things. You could also read a book or play a game with her each night as well. Best wishes! I hope this is helpful.

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Daisychain191 · 10/04/2020 16:49

Thank you for the reply - that's very useful! She gets involved in making biscuits and cakes, she likes to help add ingredients and add cupcake cases to the tin but then gets bored but usually she will help me roll/cut the biscuits.
Sometimes if she's not in the mood she will get moany and annoyed.
Do you see any positives in my OP? I've had other people suggest otherwise and it made me feel worse.

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dyscalculicgal96 · 10/04/2020 18:22

Yes I do. Why not get her interested in photography or sewing? Teach her how to independently use a camera or computer as well. Another good hobby is reading. Perhaps you can both bond on a family walk as well in the fresh air. Or you could always try to bond over a family game like Scrabble, Pictionary, Cluedo or Monopoly.
Can you ask your doctor for a proper autism evaluation or not? I also recommend asking about that. That way she will be able to qualify for important benefits and access the services she clearly needs to thrive. And she will be statemented as a result and have appropriate support put in place.
Contact the national autism society by phone or via email on Monday. They should be able to offer you some help and provide you with some information on coping methods to try. This is worth a shot at least. Look them up online. There are numerous books for families about autism.

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AladdinMum · 12/04/2020 22:30

When did she start pointing? and does she point both to request (things that she wants) and share experiences (like a plane in the sky)? nothing else really sounds concerning as it can be age appropriate. The repeating and acting of scripts she hears on TV, also known as echolalia, is part of normal language development, all children will do it to some degree and it tends to peak at 2.5Y old. Did she take the mchat test at 2YRs old? remember that autism is not a speech disorder.

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Daisychain191 · 13/04/2020 06:36

She started pointing close up in books to share/request at 17 months but afar, only really to share interest was at around 2yo. Yes mchat she scored 2 I believe.

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AladdinMum · 13/04/2020 10:00

It's late but not overly late, and a score of 2 is a pass (0-2 is a pass). It is well accepted that language development is linked to pointing so her late pointing could explain her speech delay. From you description she also seems to have many strong positives linked to social communication... hmmm. It all sounds very borderline, nothing really jumps out as "definitely autism" to me.

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Daisychain191 · 13/04/2020 12:00

I agree with it all being borderline.. it's so hard to tell. Both her father and uncle had speech delay too and caught up. It's hard to say because she does flap her hands when she's really excited.

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AladdinMum · 13/04/2020 22:15

I wouldn't really matter if she flapped her hands when excited, many non-autistic toddlers do it and so do adults, i.e. it would not mean much in terms of whether she had autism or not. Autism is a social communication disorder and other behaviors (physical, behavioral or sensory) may or may not be present with autism hence do not define or rule out autism. Autism always impairs social communication (not social motivation) so things like pointing to share interests, social referencing, 'showing/giving you' interesting things, seeking praise, etc (other things may or may not be present and hence do not mean much in terms of autism: eye contact, social motivation, empathy, response to name, hand flapping, walking in tip-toes, etc - most of these things are either total myths or poor autism predictors and hence don't really apply much to autism screening unless very severe and affecting quality of life).

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Daisychain191 · 16/04/2020 07:42

Ah thank you. She does now point to share interests (pointing to trees/flowers/cars and naming their colours lately). She shares her books with me and games on her iPad (she likes to bring it over to tell me what's on there). She always looks to us when she does something like a puzzle. It's so hard because I don't feel like she's at the level that others are at so I don't know what to think.

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Daisychain191 · 16/04/2020 07:43

@AladdinMum also she's quite socially anxious around strangers when they speak to her.

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AladdinMum · 16/04/2020 22:23

She does have very strong positives, I would personally be very surprised if she was diagnosed with autism.... being socially anxious or shy is not concerning as it shows nothing in relation to autism - i.e. many toddlers with autism are very socially motivated and very social (what's important is not being social but about using appropriate social communication - social communication is not the same as being social, i.e a very shy child could appear antisocial but display excellent social communication).

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ICSH1 · 17/04/2020 23:17

I’ve been where you are. My little boy had significant language delay despite having a good vocabulary (he loved books and at 27months could name almost anything you pointed to and could also copy speech fluently) never spontaneously used it to communicate. He flapped his hands sometimes, was preoccupied with lampposts, had a foul temper and played alongside rather than with other children. The nursery he started out at were very concerned and wanted to bring someone in to assess him (though at the time they said they didn’t know what they thought he might be struggling with) and I was honestly on the fence about whether to put him through the process at such a young age. When he went for his 27month assessment the health visitor said his language scores were very low but not desperate and suggested perhaps a hearing test and a speech therapy appointment as a first port of call. His hearing test was borderline (but he had a slight glue ear due to recurrent chest infections) but the SALT was very positive and said whilst he didn’t use language well, he was engaged and happy and playing and she wasn’t concerned. We hired a private SALT and moved him to a different preschool (one that his older brother had attended) and slowly he just..changed. He started developing quickly to the point where he’s now at school, has loads of friends, is ahead in some areas and was the flipping narrator in the nativity!! This was a boy who was hardly speaking at 3!! I worried desperately about Jude and was convinced I was letting him down by not having him assessed or supporting him in the right way and I saw LOTS of red flags. But in the end he was developing at his own pace in his own way and now his teachers simply don’t believe I could ever have been worried about him. I know exactly how you’re feeling I promise and whilst no one can diagnose your little one, she sounds a lot like Jude and he’s totally fine. It just took time...sending a lot of love x

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Daisychain191 · 18/04/2020 07:41

@ICSH1 wow what an incredible journey with your son! He sounds amazing!! I've never heard experiences like your own but I do sometimes feel that my daughter could be ok too.
Silly I know but her personality is so like my husband and he's so laid back about everything, and so is she!
She shows improvements all the time, she requests things now which she never had before. I'm not sure how much of a positive that is but it's something.
Did you know about autism at the time and were you thinking that is what your son had?
Thank you so much for your story xx

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ICSH1 · 18/04/2020 08:34

I did know about autism but didn’t appreciate what a broad spectrum it was...so broad I probably ticked a number of boxes myself!! When I started looking into it I felt Jude slotted into a good many areas (lack of communication, lack of proper playing/ socialising, weird interests) My husband is a very undramatic man but even he started looking at preschools/ schools that catered for special needs as we felt quite sure he would need some sort of help. So we just thought that was the path he was on. I don’t think it helped that his older brother was very advanced in his language and speaking in full sentences by 18 months- we didn’t really have a very accurate frame of reference for Jude. Anyway...I think I think I was hyper aware of potential issues and in a desperation to help probably looked for a diagnosis rather than let him...be. In the end, maybe through fear I did just try to let go- I still got him help in the form of his speech therapy but I didn’t push for anything else and my SALT was very good. She knew what my worries were but encouraged me just to hold on and see how he developed and that was right. I suppose having someone on my side with a huge range of experience of how children develop (rather than my limited experience of Jude and his brother and their friends) helped me put the brake on looking deeper for problems whilst also helping me feel much calmer. I know it’s hard- as parents we worry and we want to ‘fix’ but there just wasn’t anything to fix in the end. It’s hard to advise because every child is so different but like I said your little girl sounds so like where Jude was and in lots of ways I regret all the time I viewed him as having a ‘problem’. If I were you, I’d watch and wait- she sounds like she’s developing all the time and that’s hugely positive! You could always consult a health visitor or speech therapist if you remain worried- it might help you to feel like you’ve got a ‘professional’ on your side that you can trust but from reading your post I think she’s probably fine. Children have always developed at different rates but we know so much now about child development and syndromes and issues I think it’s hard to remain objective. As I said, sometimes there might be something but often there’s not. Stay watchful but stay positive and keep stimulating your daughter- I bet she keeps surprising you! X

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Daisychain191 · 18/04/2020 12:26

You sound so like me! We were actually in touch with SALT before the lockdown and tbh they weren't very helpful. They wouldn't give anything away and just said we're already doing everything we can to help her. I'm not sure what else I can do.
I think you're right in saying to wait and see how she develops. I'm just so worried about it all. It's hard not knowing what to do for the best.
So many things put her borderline with everything and now that she keeps making improvements, I just don't know! We too have been looking into specialist nurseries etc but I don't know if that's the right thing to do anymore.
Thank you again for replying to me, your story really is enlightening to read. I'm so glad your son is doing so well now.

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ICSH1 · 18/04/2020 20:28

I don’t think it’s necessarily that they don’t want to give anything away, it’s just that they don’t want to preempt anything- unless something is very clear cut, time is usually the thing they need to make an accurate judgment. Believe me they’d say if they thought you needed to act on something promptly. If people aren’t telling you your child has a problem then I’d strongly advise you stay on a mainstream path for now. If that’s not the right place for her you’ll know soon enough but like Jude you might find that a good nursery will give her everything she needs to make those final steps to flourish. Unfortunately when it comes to things like this, it’s the scary stories that stick. The what if’s. The need to help. And I do understand that but until let her be until you have strong indications otherwise. Look at her objectively- she’s not regressing, she’s making progress. Other people aren’t worried (though a parents judgement is obviously important). You don’t need to rush (and there’s not a huge amount of professional intervention you could make now anyway). I think you’re going to be just fine x

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Daisychain191 · 18/04/2020 21:38

That's true.. I think I'm so lost in it all I can't see clearly! I don't know anyone else who has gone through this uncertainty so it's hard. People around me are the competitive type too.. their child always has to be the best at everything and I know they're looking down on my daughter and it hurts. But she's so smart, I know she has it in her to go far in life. I guess that's all that matters. What I know. People can be cruel and that's what worries me most.

I think I'm worried too about her going to nursery because she's so anxious :( I feel awful about leaving her there. I do wonder if it'll actually make her worse.

You're completely right about the scary stories sticking more.. it makes sense. And the fact she is progressing is great and yeah no one else seems to think there's an issue but I think that's why I focus so much on it, because she can only rely on me to help her if I'm the only one seeing a potential issue.
You're really helping me put things into perspective and making me realise that there are other outcomes to this. Thank you! Xx

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LottieBalloo · 19/04/2020 09:33

Sorry just to butt in and add, if your DD is on the spectrum, that's ok too. My DS has recently been diagnosed and, whilst he has his challenges and different ways of processing the world, he is smart and funny and kind. He can dress and feed himself. He is a superstar even though he likes to spin and watch the same episode of a programme over and over. He can't deal with unexpected change but that's ok, we plan for that and we help him with social stories and lots of pre planning. He has to work so much harder to learn how to socially interact with peers, all the unwritten rules of communication are difficult for him, but that's ok we all support him. He is, if anything, refreshingly honest and straightforward talking. If she is on the spectrum, the way you discipline and manage behaviours should be different, as asc kids don't tend to respond well to authoritarian approaches...you get stuck in cycles and they often think it's a game. Better to use a positive parenting approach, I would argue for any child, but especially for asc kids. If she stims, don't try to restrict it, this can lead to huge meltdowns as your child ends up not self regulating. What I wanted to say was, even if you do find yourself on a different parenting pathway, your child is still who she is, she will be ok and fine if she is asc or not as long as her parents and teachers support her.

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Daisychain191 · 19/04/2020 11:41

@LottieBalloo thank you - I completely agree with you. I love her either way. Every child is perfect.
I'm moreso worried that I won't do the right thing and she won't get the help she needs.
How old is your son? He sounds adorable!

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LottieBalloo · 19/04/2020 12:01

He's 4.5 and yes he's great. Big energy and current fascination with clocks .

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OhMarnie · 20/06/2022 11:55

@Daisychain191 Hi, hope you are doing ok! Your daughter sounds a lot like mine and I just wondered if you had any update on how she’s doing?

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