3 yr old daughter about 1 year delayed

[KwaziiHunt]

I have a DD who is 3.2. She has been under observation by a speech therapist since June.
The speech therapist feels that she is about a year behind on her development over all. So, she does have a speech delay, but it is actually abut right for her development in terms of understanding and play etc. Her movement is also quite delayed (she can just about run, but cannot jump or hop). I have been told she is hyper mobile, so this may well have an impact on this.

The speech therapist wanted to refer her to a pediatrician as she couldn't diagnose a delay and as we have private medical cover we saw one pretty quickly. She didn't really do any tests, but said she was fine, but did have a speech delay.

I know that she is delayed. She is progressing (she now says 3 words in a row, but they are very difficult to understand), but her play and understanding is behind her peers.

She goes to pre school, which she adores and is very happy there. The SEN co ordinator from the local children's centre observed her last week and I haven't spoken to her yet, but pre school have indicated that she agrees that she is quite behind.

I go between panic about the lack of intervention and wait and see approach and wondering if this is my fault, to just wanting the world to leave her alone and feeling like she will catch up in her own time.

I'm not really sure what the point of this post is. I just feel very lonely with this. I don't know anyone else who's child is 'behind', and don't have any idea whether she will catch up or if there is something more substantial wrong.

Does anyone else have a child, who has nothing specific, is just delayed?

Hi kwazii and welcome to the board.

It is great that you are on the ball with helping your little girl.

I hope the preschool SENCO will be able to put some things in to place for your Dd to support her devlopment.

Now is exactly the right time to start some interventions and further observations if necessary.

There are loads of people on here whose children were not diagnosed at 3 and many on here who still have no firm diagnosis.

Keep working with your Dd's preschool and come on here for more advice anytime.

hi

my ds is exactly the same, 12months behind generally, we also seem to have exactly the same services involved too. i feel lost tbh and feel like i'm going mad.

i found ds's preschool put an IEP in place so they've really helped him with certain tasks and they will tell me what they are concentrating on so i can work with him too also is it a paed or a community paed you are refered to? ds's community paed is poor tbh but he does send a report out with more detail about specific delays...

i'll be watching your thread with interest my ds is exactly the same age x

Hi Saladsandwich
It's great to hear of someone else in the same boat (IYKWIM?).
I just feel like people are good at pointing out that she is behind, but not great at getting any real help in place. I will see what the SEN co ordinator says when I speak with her today.

Can I ask what your DS is like?
My DD is beginning to talk, but it is very simple language. She is not great at really engaging with things, does not really follow instructions (well she will, but only if she wants to do that thing). I don't know how much is her independent personality and how much is more.
She does pretend play. We have a play kitchen and lots of food etc and she will cook and wash up and make tea.
She has no concept of colours (I don't think). She likes books. Can listen to the tiger who came to tea and loves Maisy.

But there are just times when I see her peers talking to each other (or their parents, god that hurts) and chatting about concepts. And then I look at photo's of her brother when he was her age and see the things he was doing and it hits me like a brick how different and far behind she is.

Oh KwazilHunt you DD doesnt sound that different to my DS apart from he is delayed in all areas and not just speech.

I have been on a wait and see for a long time and me and my OH decided the other night that we would start pushing for answers. We have 4 consultants at 3 different hospitals and we have had so many hospital appointments with all the Drs ending in can you come back in 6 months so we can see if things have changed.
And yes it does hurt when you see other children doing things your child should be able to do. But your little one is special and just needs that extra bit of support.

We are back at the hospital Wednesday and I am making a whole list of things i want them to check and be aware of. Im even going to print them off a copy. Im sick of being pushed from pillar to post not knowing whats wrong or how i can help him properly.

I would go talk to the school and make sure she is getting as much help as possible, demand it if needs be. Good luck

Thanks for the reply. The thing is I think it is in all areas and not just speech. But we have seen a pead. who has said she is fine and therefore there is nothing else that can be done. She seems to be 'not bad enough' to get any real help. She doesn't even have speech therapy. The speech therapist simply comes around every few months and says that she is progressing but is still behind. Which really isn't very helpful.

It is all very frustrating. Can I ask how you know your son is behind and not just in speech?

kwasii, you saw the private paed, didn't you? was this a developmental paed?

I would get a referral for a developmental paed on the NHS as well and I would try to get to the bottom of things. you don't seem to agree with the paed you saw and still have a lot of niggles. I would get DD to be seen by a paed on the NHS to get a 2nd opinion. also, if your DD will require ongoing help (e.g. also at school etc), then I think you should be 'in the system'.

are you actually receiving speech therapy atm? I found the book 'it takes two to talk' really useful (cheapest at winslow publications).

my DD (4) was very much delayed at 3 and still is. we received recently a dx for autism (not suggesting this is the case with your DD). but often children get a dx of general developmental delay and only receive a specific dx (such as ASD) at a later point.

What did the SEN coordinator at school say?

I haven't managed to speak to her yet (the SEN coordinator). I am waiting for a call back.
I was thinking I may try and get a referral on the NHS. It was a developmental paed I saw and to be honest I am likely to see the same person on the NHS.

I just have a gut feeling there is something wired differently. But I have felt this since she was born.

It is very confusing as I suffered badly with anxiety when she was born and had trouble bonding. It was very hard to get any kind of reaction from her, she had bad colic and was difficult to 'reach'. But because of the state I was in I don't know if it was me or her. And I worry that she missed out on something fundamental as a baby that has affected her.

Things have improved massively. We have a great relationship and I can communicate with her. But she is still in her own world. It is very difficult to explain.
she is an absolute delight and everyone falls in love with her. But when you are her Mother, it is obvious that she does not respond to the world in the same way as other children. It's not such a huge part of her that others would notice. But when my friend was staying and looking after her, she commented that she couldn't play with her. And that is true. She potters around and is very easy company, but she doesn't require anything of me. She won't ignore me as such. It's very hard to explain and sometimes I think there is something different and then I think it is just her personality.

I have been told categorically by the speech therapist that she is not autistic.

speech and language therapist cannot diagnose ASD on their own. DD has been seen by 4 Salts so far and the first 3 ruled out ASD categorically. DD has now a dx for autism (moderate to severe).

if you think something is not quite write, the follow it up. trust your instints!

I agree with Chocjunkie trust your instincts. I knew from birth my DS wasnt normal he just slept all the time, had to wake him for every feed. Everyone told me to stop being so neurotic and paranoid and be grateful i had a good baby.
MY DS does the same he doesnt play as such he is just always in the room and there. Alot of the time he is sat on my knee and i read to him or sing nursery rhymes with him. We have to do the same one again and again sometimes 20-30 times in a row.

The tests he had done were Griffiths mental development scales. With a development consultant. I am annoyed with myself that i allowed the DR to tell me he will reassess in 6 months time, i am sick of 6 months time.

I am not sure if my DS has autism, many of the signs are definate signs of austism, other features he doesnt have. Its a very confusing condition.

We have an appointment wednesday with an Endocrinologist, on the letter it says if surgery or treatment is needed there will be a delay of 4hrs. I mean come on 4 hours. I have to keep DD off school just to take him to the hospital as we cant guarentee we will be home and i have no one else around to collect her.

Oh geez DS has lost his lipgloss thats what he is focussed on today (he has been home for 10 minutes and its already feeling like hours ). This will go on until we find the lipgloss and if its not found soon a major tantrum will follow. I just hope when he headbutts he doesnt get my nose or mouth this time.

One thing that is clear from being on this forum is that the majority of parents have had a gut feeling something is wrong and they have had to fight fot help and a diagnosis. Im in fighting mode today just hope it carrys on till his appointment on wednesday

Thank you both.

Can I ask what you would suggest?

A referral to pead. What else can I do?

Your child if you are in England is still under the Health Visitor so she would be my first port of call. In fact mine was.
Your GP can also help
Can i ask if anyone elses DC puts everything in their mouth,
My DS constantly has his fingers in his mouth, or his tshirt and even toys, i dont know how to stop him but its driving us mad.

She puts everything in her mouth. Everything. I am constantly telling her to take things out.

Not so much fingers, but objects and she still eats playdough.
In fact, she just still does inappropriate things. She doesn't have much sense of danger and plays with things she is not allowed to. She will disappear as well. Just decide to bugger off somewhere else.
I feel she is very vulnerable and worry that something will happen to her because she can't be trusted.

I may ask my speech therapist to make a referral to the dev. pead.

And I'll see what the SEN coordinator says if she ever phones back.

OMG my DS is talking to his lipgloss. Well its not proper words but he is having a very definate and long conversation.

He doesnt go off too much on his own, he did however run off down the road a while back and refused to come back even tho i was shouting, When i ran off to fetch him he just got faster and started laughing. I was so scared and really yelled at him when he got back and then of course i felt like crap afterwards.

Im also not sure who to call, he needs his hearing test doing and he needs to start speech therapy asap. Have also told school that on Thursday we will go speak to the them about what they can do to help my DS at nursery.

He is also a messy child, i just bought his garage and cars downstairs....he tipped out his box cars are everywhere all he is focused on is his lipgloass which is now in the box. If i left the room with this mess he would scream and go crazy and insist on cleaning it up. At bedtime his room has to be tidy or he wont sleep.

His teddys are in a particular order in his bed, in fact we dont touch his bed unless we are washing the bedding whilst he is at nursery and put everything back where it belongs before he gets home.

I would either talk to GP or Salt and get her referred to dev paed. I would not bother with the HV (mine was rubbish).

also talk to nursery and see what kind of extra support they could give to your DD.

and have a good long read on this board. you will see that many of us have used very different approaches (such as nutritional chances, supplements, ABA etc) in helping our DC. it will give you some good leads to follow up :)

OP, your DD sounds so much like mine. She is almost 3.5 yrs old and we have been told by SALT and the developmental paed today (NHS) that she has moderate developmental delay and is at least 12 months behind where she should be.
DD is at preschool and has so far recieved very limited SALT, just two 30 minute assessments since she was 2.5 yrs. She has severe speech delay and although her receptive language is good she only has a few words, none which are clear.
Paed felt today that the fact she does not have repetitive and rigid behaviours probably rules out ASD but has requested a full and comprehensive SALT report before deciding whether to do a formal ASD assessment.
She has also ordered blood and urine tests for a full genetic screen.
We were told by the paed today that 50% of children with developmental delays never receive any formal diagnosis because there simply isn't which fits.

Hi Alice, thanks for your message. I am encouraged to push for another paed referral. She was under 3 when we last went and I think the dr felt things were still in the realms of normal.
Can I ask did the paed say anything about the future and how things may turn out. Are out dd's likely to catch up?

Like your dd, mine shows no repetitive or rigid behaviours.

Still no call back for SEN coordinator today. Why do people keep you hanging on?

I should have asked how you are feeling after today. Were you expecting the paed to say what they said?

hi kwazzi i'll try answer your questions on my ds

well my ds is talking but it is hard to understand, his receptive language is good, i know when he hasn't understood because he repeats what i have said back to me, also his longest sentences are copied from either me or tv... if i say "dinner time" he might say "no dinner time" if that makes sense.

he use to follow instructions better than he does, i think this is just a defiance stage all toddlers go through though whether it is 2years or 3 years development i dont know, my ds is far from indepenent though, this is one of his delays

his pretend play is limited he will play with cars though, his play skills overall imo are behind, with other children he will play chase, follow a crowd but thats where it ends. ds is very very very good with colours, think paed put him age 5 bt everything else around 2 years :(

he loves the same books repeatedly, hes fantastic at jigsaws but as lost his interest in them (my fault)... he is very demanding, very OTT with reactions to anything

x

*Kwazzi, I asked the same question today. What is the future? Is there hope that the delay be closed with extra therapy? It seems there are no answers and only time will tell. She did add that of the 50% of children who don't fit any formal diagnosis, the majority don't need one. I took this to be a positive.
DD is a happy, calm little girl who has no major tantrums. We can take her anywhere and she adapts well. She does sometimes look out of the corner of her eyes at objects (soft toys for example) but does not do this regularly or in the absence of looking at things directly.
It's so worrying isn't it?

The paed didn't really get the chance to assess DD today as she was so tried after preschool (3.30pm appointment) that she went to sleep on my lap. This is the first time this particular paed has seen her so she gave her advice mostly from the SALT reports and last paed appointment from last November.

My son is 4 and has a speech disorder and he is also a year behind everyone else. He loves nursery but he doesn't really interact with the other children. He goes to a speech therapist and he is improving but slowly. I have no concerns over his learning as he can count high and even backwards and knows all his colours, animals etc but he has terrible co-ordination. He can't hold a pencil properly and struggles to put on his clothes although that is getting better.
He starts reception in September and I am not looking forward to it as I feel he is so far behind the other children.
It is very frustrating

Im off to phone the hospital to find out where the appointments are for speech therapy and his hearing tests. Also am going to speak to HV to make sure she is aware of everything so she can offer some advice.

BarmyBiscuit, my DD starts school this September and as well as being a year behind developmentally she will also be the youngest in the class, August born.
I am pushing for DD to have 1:1 support which the paed yesterday agreed with. She said she deliberately put "moderate" instead of "mild" delay on her referral letters (DD is borderline between the two) as she wants the school to sit up and take notice and put the extra teaching support in for her.
Is this happening for your son?

Also Barmy, does your son have an official diagnosis of anything? It seems to us that unless the genetic tests bring anything up or the SALT decides she is showing signs of autism, she will just have a vague "developmental delay with no known cause.

aliceinboots what classes as an official diagnosis, we have a letter stating he has developmental delays and the letter says he has general developmental delays but significantly in hearing, speech and social skills.

My DS starts reception in September also. It will be interesting to see how the different schools respond to the issues.

My DS forgets things. He once knew his colours, he learnt them perfectly then one day we had a busy day and i didnt do his colours with him and he couldnt remember anything I had told him. He also forgets words he has once known or says them in a different way Boobies is now boudies.

My Hv has left and is working elsewhere so now i have a day of trying to find out who is going to take DS under their wing and offer us the support we need.