3 year old doesn't understand.

[Cleanta]

Hi everyone.
I have a gorgeous little girl who will be 3 in march. I started noticing developmental issues around 12 months of age. Just little things like she didn't look when her name was called or didn't clap or point or look at anything we would point at. She also toe walkes, I raised my concerns pretty early to my healthvisitor but they didn't seem very concerned about it. Around 2 years she would still not point speak or listen to her name, so I spoke to the healthvisitor again and they referred her to be assessed. There they concluded that she was very far behind with a lot of things and said she would need physiotherapy, speech and language therapist, hearing test and she would start nursery early. Btw I forgot to mention to you guys that my biggest concern was not that she doesn't speak or tippy toes but that she has no understanding of speech, like you can say to a 2 year old "give mummy a block" or " do you want some juice" or "are you hungry?" But she has literally no idea what I'm saying. Fast forwarding a year. She is now almost 3. The hearing test was inconclusive because she got very upset and so there was no way they could do it properly, she's going to nursery and loves it. physiotherapy has still not started and speech and language also didn't start yet. She now looks when you call her name and seems to understand when you say the word juice or come here. She is very verbal and she likes to shout randomly out of nowhere, anger or sadness or happiness, I can hear the difference but as an outsider it probably all sounds the same, yet when she says a word she speaks in a normal volume, she doesnt say a lot of words she doesn't even say mummy or daddy, she can only say juice, clock, socks, shoes, apple, and ana (banana). She also refuses to walk with me, I mean this in a way of when we go outside for a walk or to the store or anything she will literally run away. And I'm not kidding like run anywhere if I call her or say come here in any form happy, sad, strict, she will just run away to anything she will find interesting, she also doesn't seem to be walking, ever, it's always running. This results into her sitting in the pram most of the time. But I dont want that, I want her to explore and show her everything in the store and take her for fun walks in the park. But because she doesn't understand "hold mummys hand" or please stay with mummy " it is impossible to show her that 'you are aloud to walk and to see things but you have to stay close by'. Or even as simple as going to a playground, if we go left we will get to the playground. But she doesn't understand that so she just starts crying like i just killed someone.Because she was going right and I just directed her to go left. But I'm not going to lie even through all the shouting and crying she is so cuddly she always wants cuddles and kisses from mummy. And I have babied her, I admit that, I always spend hours rocking her to sleep because I couldn't hear her cry and stuff like that but eventhough all my friends said not to do that because she'll never learn to self sooth she is a perfect sleeper now. She also isn't potty trained because she gets super upset if I even try and put her on the potty, And again, because I can't really tell her the reason because she doesn't understand what I'm saying or even have a reward system or just act super happy because she's already super upset with me for putting her on the potty.
Sorry for the long text I'm just to the point that I feel like such a shitty mum I am trying so hard to make her happy but I can't explain to her why certain things just have to be done and I honestly feel like I'm traumatizing her by even only washing her hair ( which she absolutely hates) my health visitor says they need to let her develop before diagnosing or investigating any further and I agree but I also think that if she does need special help in any way we need to find out why she does what she does.
Thanks in advance.

I know it's hard, but try to think of what stage she's at rather than age. E.g. one of the keys signs of potty training is understanding and language.

Support her to develop her next steps and you'll see much quicker progress

I don’t think any of this is anything to do with how you have patented her. All Mums feel guilty pretty much all of the time, but I think there’s may be more going on than you’ve rocked her to sleep for longer than other people said you should.

I’m not sure what the HV has told you but a few things that you’ve said would suggest that she may be ASD. I would do the m-chat test today and see what her score is.

If the tear says she’s at risk of ASD, I’d then book an appointment with your GP. Show them the score, ask for a referral to a Paeditrician so that she can be formally assessed.

Also tell the GP that you are still waiting for Physio and Speech & Language Therapy (SLT) and ask if they can do anything to bring these appointments forward.

As for taking her out, would she wear one of those little backpacks with reins attached?

*parented.

I feel that you have been let down by your health visitors and certainly nothing you have done or not done, in fact, from your description it sounds like you are an amazing parent and she is so lucky to have you :) It is highly likely that there is a underlying development issue - even if we put her speech and sensory issues aside, a child not pointing or following simple commands by 2YRs old is very concerning and normally indicative of deeper issues, likely autism or similar. A previous poster suggested to look at the MCHAT test, and while a very useful tool, just from your description it is evident that she would fail it (a toddler is expected to pass it by 18M, latest 2YR). I find it astonishing that your health visitors are still taking the "wait and see" approach when what she needs is to see a development pediatrician - I would go straight to your GP (and ask for a referral to a pediatrician). A development pediatrician would be able to asses her further and suggest recommendations for further testing and eventually get to the root cause.

@Cleanta hello, how is your little girl doing now? It’s been almost two years since your post. I’m in a very similar situation worried sick about my dd. Please could you update in your daughters progress. My main concern is her understanding, my dd doesn’t understand anything.

Hello - would love to know your little girl is doing too.

Your description is very similar to my 2.5 year old son, through lots of reading I found out that he has a receptive language delay/disorder. It sounds like your daughter may have a similar thing. It's where they struggle to process language, so they can't understand when someone talks to them in sentences or gives them instruction. So they fail to respond in an appropriate way. I struggled so much with trying to explain this to people - because my son could speak (hundreds of words but could only label things and not make use of the words effectively) but not understand very well - it confused people. Luckily we received a lot of support from nursery, portage, doctors, speech and language. I would push for more help as what I've learnt from my own reading is that early intervention is so important and trying to give them ways to communicate what they want / feel / need and ways we can communicate to them in a way they can understand. We have been suggested Makaton and using visual point of references.

@Cleanta would you mind me asking for on an update of your daughter how has her development come on since your post? My boy is 2 and a half and i could of wrote this myself! An update would be so helpful if you dont mind sharing? Xx

Oh wow, I have never read a post that describes my son absolutely perfectly. Even down to the being upset over turning left when you need to go right, he will have a full on meltdown.

My son is 3.5 and very obviously has ASD but maybe at your daughters age, I still had hope that things could change and it was maybe all in my head, that unfortunately wasn’t to be. He talks loads, knows the alphabet, 1-20, order of the planets, colours, shapes, animals etc and even sings countless nursery rhymes. He will
sometimes repeat back what you say to him and has occasionally shocked us by saying something that coincides with what he clearly wants or what he’s doing at that moment in time. I remember he was upset over a nappy change the once and he said ‘grrr angry’ and then never said it again. He also told us when he did a poo once.. ONCE! But then again, never said it any other time.

I wish he had more understanding, it breaks my heart how frustrated he gets because he doesn’t know what we’re saying and he cannot tell us what he wants or how he’s feeling. I keep waiting for this breakthrough moment where he calls me mommy, or he tells me what he did at nursery, or just tells me he wants a drink, or a snack. But it hasn’t happened yet.

I always read these kind of posts and pray there’s an update at the end so I’m gutted you may no longer be around on mumsnet. On the off chance that you are though I’d like to also add to the other comments that I’d love an update.

my son is 3 and doesn’t understand anything or next to nothing. His twin was diagnosed with ASD for for some reason although he was showing the same signs they decided to book his appointment to be assessed in 12 months time. I feel so let down by my healthcare nurse and the lack of interest in my concerns.

I get a boost of energy to work hard and help them but I come crashing down at the reality.

is there an update on your child? Has anyone experienced this and their child has started to communicate?

@Twinmama2020 I think you might need to try an @ if you want the OP to come back

@Twinmama2020 I wrote on this post for an update back in September last year, so 6 months a go. Back then I was in complete despair over my child’s lack of understanding. Although he is still very much delayed he has come along SO much since I wrote that post.

For example.. this time 6 months a go he still breastfed every so often for comfort, he still slept in our bed and always needed us by him to help him fall asleep. Now he no longer breastfeeds (and hasn’t for about 4 months) and he now sleeps in his own bed, in his own room and goes to sleep ALL BY HIMSELF!!! We just say goodnight to him and that’s it, done.

He is still very much in nappies but this time 6 months a go he never would have communicated to us that he had done a poo and he honestly would have happily sat in a soiled nappy all day long. Now he comes up to us and says ‘nappy’ I really couldn’t believe it when he started to do this, it’s one huge step towards hopefully potty training soon.

He can now point at certain things, chooses what he wants on the tv, what snack he wants, he takes his own coat off himself and asks for help to take his shoes off. This time 6 months a go he would have walked around in his coat and shoes for the rest of the day, he just had no idea they come off when you get back home.

6 months a go he never pointed to things in books but he suddenly became obsessed with it around Christmas time and we would sit for hours looking at his books, listening to him say the animals and different objects in the books.

Anyway, my point is that even children with ASD will develop further, it’s just differently paced and just because they don’t do something right now, it doesn’t mean that they never will! I have learnt this from my son over the last year! I have to remind myself on bad days how much he’s come along. He’s also happily settled in to nursery too, I mean he doesn’t play with other kids whilst there or get involved with group activities but he’s happy there and that’s the most important thing to me because I never saw him being okay in that sort of setting at all a year a go!

Hey @L0ts great to read your update, your little lad is doing great. Was there any strategies in particular you found good for helping with his receptive understanding?

Hi, I can’t believe this post was still going. Olivia is 6 now. She’s been diagnosed with ASD and low IQ. She goes to a great school now and all is well with her. I haven’t read my post but I think she was still non verbal when I wrote this. She isn’t anymore she speaks well but not the way it should be yet. But definitely a completely different child. She’s also daytime pottytrained now. Sorry for not seeing these posts sooner I am never on here anymore.

@Cleanta I am so pleased to hear this update, it gives me a lot of hope! Can I ask how she is with walking now? This is probably my biggest concern with my son and the hardest thing to tackle. He still uses a buggy and is still put in the trolley at the supermarket, he basically just won’t really walk anywhere whilst we’re out, well he will sometimes but he picks and chooses when to cooperate and more often than not, he doesn’t.

@RiverRock22 Honestly I think the biggest blessing for my son was him starting nursery. As much as he doesn’t do what they’d like him to do they still try and try with him and I really put it down to that as to why he’s come along so much in the last 6 months. What I tend to do now is I tend to always give him a choice and whenever possible try and get him to speak. For the longest time I think I just thought ‘What’s the point, he doesn’t understand anyway’ so didn’t bother, which I totally get is wrong of me. But I do little things now like I know he wants a snack so I’ll give him a choice so he has to say which one, I’ll hand him his plate at dinner time and ask him what food is what, if we’re watching tv I’ll ask him how many people are on the screen etc so he counts. Just little things like that! We started playing a game around Christmas where he pretends to be a random object (literally he’s been instruments and vegetables 😂) and he chases us out of his bedroom and in to ours, it’s the sweetest thing. I’ve learnt to stop wondering why he isn’t ‘normal’ or doing ‘normal things’ and just really started to engage with him with the things he enjoys! Honestly the biggest thing for me over the past 6 months has been me accepting he has autism and that’s it’s okay, he will learn things in his own time ❤️

Oh yes Olivia was terrible with direction and walking. She was also a toe walker so she toewalked everywhere and wouldn’t go the way we said her to go at all.

but patients. We didn’t do anything about it. I think it’s because she didn’t understand much she just got a complete meltdown if we went right when she wanted to go left. It just changed overtime. We kept her in the buggy for a long time! But what we did do is go into a supermarkt and let her walk by herself and try to engage to where you want to go. It felt save there because there’s only one exit. Do it with someone else with you though. So one can keep an eye on your little one without them knowing while you say let’s get some “” . If your little one decides not to go with you it’s ok because the othering will keep an eye on him. Then you circle around back to him through another route. But don’t sweat it to much. With Olivia all these things we were so worried about, did eventually just go away or gotten better. It’s just that for Olivia she is emotionally really behind so things like following and speaking and understanding came so much later, but it did come. And if he’s happy in the stroller that’s fine. Sooner or later he’ll want to come out because something will interest him so much but he’ll be in the stroller and would have to come out for it to investigate. That’s usually how it starts.

@Cleanta That’s amazing! I’m so pleased she’s made lots of progress! That’s a really good idea about the supermarket by the way, thank you 😊 How is her speech and understanding now? Are you able to have some level of conversation with her? And if you don’t mind me asking (another question sorry) what age did the walking get better? Sorry I’ve just honestly never read a post which described my son perfectly before! Especially how he seemed to be last year anyway, he is better now 6 months on from when I first read this!

I honestly don’t remember. I think when she was 5? Because the walking went better gradually so you didn’t really notice untill it was completely gone. Olivias understanding is ok. So she can understand things you say to her but a full story about your day she wouldn’t understand. Also her speech is good she knows all the words and speaks in full sentences but she speaks two languages (mum is Dutch and dad is English)so i recon that is why her sentencing isn’t always correct yet. How old is your son now? Does he go to a special school?

@Cleanta That makes a lot of sense! I’m so pleased again to hear she’s doing so well! And she’s only 6 too! Her understanding and speech etc will just continue to slowly get better over the years 🙂 My son will be 4 in April! He is at mainstream nursery currently 3 hours a day for 5 days a week! We are in the process of sending off for an EHCP to help him in reception, he can continue doing 3 hours a day until he turns 5! If he doesn’t get on well then we will apply for a special school for when he starts year 1 (next September). I feel this will be what we end up doing as he honestly doesn’t follow instructions at nursery and I don’t see him suddenly being able to for reception in September! They say he’s improved a lot, but he’s pretty much on a solo mission whilst he’s there, he doesn’t get involved in group activities and keeps himself to himself. His speech is very, very good and he’s exceptionally clever, the kid can honestly recognise shapes such as octagon and rhombus 🥴 It is just the conversational skills he lacks a lot. Your story gives me a lot of hope, thank you for coming back and giving an update! ❤️

Thanks for the updates ladies, the great improvement of speech is really reassuring and makes me feel positive 😊

Honestly special school was really good for Olivia because she also didn’t do any activities with the class. She wouldnalways just run around and if they had to sit in a circle she wouldn’t or have a mental breakdown. But in special school the class doesn’t have many kids so everything is so much more clear and routine like. So after two weeks of her not wanting to do anything she realized she’s seen everything in the classroom now so I’m ready to do what the class is doing and since everything is the same everyday she knows what’s expected.

So glad that's she is somewhere that seems to suit her and she's settled @Cleanta

@L0ts omg what an update! That’s amazing and gives me hope. Thank you so much!!

Just bumping incase anyone else is in the same position and has any words of wisdom/solidarity!

I read this thread and it's nice to not feel so alone. My 3 year old is very similar to how you describe your little ones:

Doesn't understand very much at all, or if he does, he doesn't show it or react appropriately

Complete defiance at being told 'no'

Very limited language, and repeats the words he does know many times over and over

Meltdowns for no apparent reason, he cant tell me whats wrong or even show me usually

Appears to be on his own little world

Extremely boisterous and headstrong

Refuses to walk outside the house (this is new), he's big for his age and I struggle to carry him, which makes me dread taking him out

I'm at the end of my tether and feel like I'm failing him. At his 2 year HV check he wouldn't engage with the HV whatsoever and she was very concerned and since have been waiting for a year for an appt at a child development centre. His nursery also concerned and said 'there is definitely something there'. I've cried everyday since I heard that. I do have good support at home but honestly I just feel heartbroken, and I look at him and think I don't know who he is. I hope that makes sense.

He is a gorgeous happy little boy with a great family and home life filled with love. I just don't know what his future looks like and it worries me massively. I just feel like I need some hope. Sorry for rambling 😔 x

@shorty9lncs I'm so sorry that you e had to wait a year already. The length of waiting lists is truly diabolical.

Do you know where the HV has referred your DS too? Have you chased up the appointment yet? Have you found any support groups locally?

I'd also recommend checking out the SN Children Section as there are lots of MNers in there with experience of the assessment process