DD aged 2.1 language delay and causing us concern...what to expect from Paed appointment?

[Needingsomeadvice]

I hope someone can please give me the benefit of their experience. I posted under this name a few months ago (not my usual posting name) about DD, then 22 months here and since then she has had a 2-year check where she was referred on to have a hearing test and to a SALT (she didn't say anything at all during their visit and I had spoken of my concerns to them).

The hearing test result was that she could definitely hear, but the audiologist was very concerned that she had poor eye contact and "no real meaningful communication" with her throughout the appointment ther than saying "Ankoo!" and holding out her hand for a block a few times. She was also coming out with random phrases which didn't fit the situation. She was basically concerned about ASD and said as much at the appointment. She promised to chase up the SALT appointment and also refer to a paed as well.

The SALT appointment a month or so later. DD was a bit more friendly and chatty, but was mostly running up and down throwing a plastic apple and retrieving it. SALT brought out a picture lotto game...DD continued to race up and down, eventually showing some interest and pointing out (not in response to a question but just randomly) a fish and opening and closing her mouth, pointed out a pig and said "gig", a pencil and said "cayo" (crayon). SALT deduced that she was less concerned since she had made progress in the last couple of months and opted to see her in 3 more months.

I was still concerned, to be honest. At 2 I would expect her to have made more eye contact than she does. She doesn't wave goodbye and although she will clink cups with you and say "Cheers!" she never says "Hello" or "Bye-bye" to anyone in a normal sort of way. She is not totally detached or anything - will cuddle up to me and even sometimes kiss. She has started having big tantrums which involves high pitched screaming and will go on for ages. I have also recently started a music/movement type toddler class with her as she likes dancing - but I am finding it very upsetting as she does not do ANYTHING she should. Typically she will run off (all of the other kids, aged from 18 months-3 years will be sitting in circle on mums' knees at the time). She cannot follow a simple instruction - today the lady who runs the class held out a bright scarf for her and I pointed her towards her and nudged her - she ran right past the lady as though she were not there! If i try to hold her on my knee she has started that she will do the high pitched shriek and either lie back/go all 'floppy' or she will struggle and pinch/scratch until I let go...and then run off. She was given a tambourine and she ran off to the corner and repeatedly threw it on the floor to make a noise (this could be normal behaviour, but pushing things over and throwing on the floor is a recent game of hers she seems to enjoy). The fact was that she doesn't seem to care what others are doing, or notice that she should be copying the lady and banging the tambourine.

Anyway, I'll get to the point. Her paediatrician appointment is next week. I am not sure what to expect, or whether there's anything I can do in advance to help? I would be grateful if anyone can help me out here with any idea about what will happen at such an appointment. I am very worried about her and especially that this is an important time in her life, time's ticking on and I really want to help DD but am not even really sure how to (beyond all the normal stuff that we already do such as read to her, talk to her, try to make her express a simple preference by offering 2 choices e.g. milk or juice, that sort of thing).

paed will probably run through a developmental history of your DD.

write down all your DD's milestones, anything unusual during pregnancy/birth. and make a list of all your concerns. I would also mention your nephews ASD (as it sometimes runs in families). I would leave a copy with the paed.

paed might do a small assessment. and other than I would not keep my hopes too high. paed will probably not do much else at this stage and will want to review after 6 months or so.

good luck

I agree with choc. It is about making sure everything is on record so they can periodically review her progress.

She is still very young and some kids do catch up and go on to develop normally, and some don't and go on to get a diagnosis.

The thing with developmental problems is that they do have to sit back a bit and monitor in order to ascertain of there is a long term problem.

It's great that she is already in the system, any help she needs will be given sooner rather than later.

Fwiw my son was just the same and eventually got a dx aged 4.5, and a statement aged 5.

My DD was almost exactly like yours at this age. She was seen by a paed at 2.5 yrs who hinted at "social communication disorders" being a possibility.
She is now 3.5 yrs, still under the paeds and SALT and is progressing slowly with her speech and social skills. She is in a decent preschool which have helped bring her on.
She is almost certainl going to need additional support when she starts reception in September as she is at least 12 months behind developmentally, especially speech and language.
Our paed feels that although she hs some ASD traits she doesn't have the "full set" required for a diagnosis.

Good luck with the process of getting your DD assessed. Nothing happens quickly and no rushed diagnoses are made which is a good thing. Your DD is still very young. She could mature dramatically in the next 6 months but it is also good that she is "in the system" for evaluation.

Thanks, Shakirasma and Chocjunkie for your replies .

Shakirasma did you mean he was showing the same behaviours? Before you got a dx did you get other support? It feels like a long road and meanwhile she's growing up.

Chocjunkie the audiology specialist was very interested in fact DN had ASD too. I was feeling more hopeful but she CC'd me the letters she sent to the Paed and the SALT and HV and her opinion on DD's eye contact and lack of meaningful interaction brought me back down to earth . Also this dancing/music toddler class really makes her look 'different'. She really stands out. There was a new little girl starting yesterday who was a bit wilful and younger than DD but at least would go and collect a scarf or tambourine from an outstretched hand.
I am not being overzealous am I? Would this concern other parents?

I would trust my instincts and if you think something is not quite right, then follow it up.

does your DD talk at all?

your DD sounds very similar to my DD (now 4) at the same age. my DD now has a dx of autism.

Gah! I just typed out a long reply to you aliceinboots only to get a message about Mumsnet being offline for a few minutes and now it is gone. Thank you so much for replying.

Did you get any support or advice on how to help your DD in the meantime? I mean, without a dx, are they working with your DD's preschool at all or have they given any constructive advice? I know my DD's language is at least delayed but apart from the stuff you'd do with any child (reading with her, talking to her, taking her places etc) I am yet to receive any suggestions as to how to bring her on with her communication skills. Yet, if the normal sort of stuff were adequate she wouldn't be delayed with things like waving, pointing, general chatting etc would she? So I felt we could have been doing with more. But as hopeful as I was, all the SALT gave me was a standard NHS (and very obvious) 'Talk to your child and share books with them' type of leaflet and a couple of printouts of vocabulary to use as a tick sheet if I wished.

Thanks everyone for being here and replying. I really do appreciate people taking the time to give me their insight.

Chocjunkie she does talk in that she says "Mummy!" to get my attention and before her illnesses was seemingly developing ok (pointing out colours and animals and knowing some noises even). She has started that if I ask if she would like more milk she holds out her sippy cup for me and says "Ankooooo!" but she doesnt seem to get 'yes'. She has a better grasp of 'No' as a bad thing (i.e. she will yell "NO! NO! NO!" like an angry chimp and gesture towards the thing upsetting her (DS having chocolate that she hasn't been offered is a typical example, or him taking her toy). She also throws a wobbly if we tell her 'no' so she knows it is not good news. She seems really inconsistent, but generally won't do anything to order, but will sometimes volunteer things. She won't wave or say goodbye or even "Hiya."

Right, better go as she is climbing all over me to get attention (which I suppose is a good sign - at least she wants attention!). I had to come on here quickly to see if MN was working yet!

PS. When I say 'angry chimp' I mean alongside the no she sort of shrieks angrily and bobs up and down - I realise that chimps cannot say "NO!"

Hi needingsomeadvice I know exactly how u feel, my dd2.5 would be exactly the same in that situation, she wld jump/skip around taking no notice wotso ever of the others there, how ever much they called her/ tryed to pass her things etc!
She also stands out and you can see the difference as she has poor eye contact+doesnt seem to understand what people are saying to her (she looks straight past them)
My dd is waiting to see a pead, has seen a private salt while on waiting list with nhs who suggested a communication disorder.
I won't take my dd to groups like that anymore as it just feels stressful+not so much fun! I take her to softplay areas instead where she can run/climb/skip as much as she likes! You can always do the music etc at home.
I have learned from advice on here not to worry so much about the exact reason dd is different+chase a dx as nothing much changes then anyway so for now I'm just concentrating on what I can help her with now (understanding+speech)

DD did not get speech therapy until 3.5 (waiting lists). I found the strategies in "it takes two to talk" (cheapest from winslow publications) really useful. i am having now a block of S&L therapy with a specialised SALT which teaches pretty much the same techniques...

DD started to get help from nursery from 3 onwards (we had to change nursery as her previous was useless).

oh, she also struggled with yes/no questions. she only was able to answer yes/no questions (such as "do you want an apple?") from 2.5 onwards. but the "no" was there much earlier than the yes.

we are also doing a small ABA programme which also helps. but in all honesty, we did not get much help via NHS (getting a dx did not make any difference).

Thanks osospecial. Yes, sounds familiar. It's half term next week and trying to decide whether to keep her at her new dance thing (you pay upfront, so have to think carefully!). You are right, I take her to a Surestart run Stay n Play which she loves...it's free too so even better. She is fine milling about between the playdough, outdoor areas, easel and water play and think the level of social interaction is good for her (low pressure) although she gets upset at snack time when others want the fruit and last week she took swipe at one of them for daring to take fruit. There are children the same age there saying "Mummy where is my cardigan...uh-oh it wet!" and meantime I am trying (and failing) to get DD to wave goodbye. But I do love her so dearly...just worried for her future.

Hi again Chocjunkie - yes I have heard of that book...saw it was expensive on Amazon but the few pages I previewed were so helpful.
What is an ABA programme please? Sorry for being clueless....

Yes agree with chocjunkie the 'it takes two to talk' book is good, when I saw the private speech therapist she was impressed with how much I already knew+was dng with dd (all came from the book or advise from people on here)

Needingsomeadvice, I totally understand how you feel when you hear other children the same age or younger holding conversations with their DC's. DD wouldn't even sit down for snack time at 2.0/2.5 yrs, would ignore everyone and run up and down the hall or lie down on the floor babbling to herself.
I am also a fan of "It Takes Two To Talk" and found the advice to observe DD and respond to her actions and interests much less fustrating than "forcing" activities and they worked better.
DD is due a very thorough SALT assessment at her preschool as she has only had two 30 minute sessions (one per term) but now our paed has ordered more intensive evaluation and has asked the SALT to offer an opinion on ASD. DD may still have a formal assessment depending on the SALT report.

The preschool have also arranged for me and DD to see their educational pyschologist who will assist us and the school staff on how to best interact with DD. Their report will also be used in deciding if a ASD diagnosis is appropriate. I tend to agree with the paed at this point that she isn't (no rigid, repetitive behaviours, need for routines or meltdowns) but it can't be completely ruled out.
On the plus side, over the past few weeks DD has come on massively. The preschool teacher has reported that it is like a lightbulb coming on. DD is agreeing to do puzzles, is engaging much more, joining in with nursery rhymes, will generally sit down for carpet time like the other children. She had previously been doing her own thing and ignoring everyone.
She is also asking simple questions and pointing things out (shared interest) and will repeat new words back to us if we ask her.
There is hope! I really believe DD will catch up in the end!

DD also loves dancing and singing and both at home and preschool we are encouraging nursery rhymes with actions so she can join in with the words and copy the movements. She really enjoys it and engages really well.

I have just been learning about how much things like omega 3, magnesium, zinc + B vitamins can help aswell. They are supposed to help concentration, eye contact etc and this is particularly good for my dd as I find it hard to teach her new things/ words as she doesn't concentrate for long.

Thanks so much again everyone. I have ordered the book "It Takes Two to Talk" at the library (I had tried before but couldn't find it).
DD has had a reasonable day today apart from her recent habit of slapping other children at Stay and Play . I think that might be a 2-year-old issue rather than anything unusual though...

Osospecial I was reading about the supplements on here too...very interesting. I took MumOmega when pregnant with DS and DD (couldn't stomach them at first with DD due to reflux and heartburn bringing it back up - did take pregnancy vitamins with both though).

aliceinboots That's great news about your DD. Sounds like all of the input is helping . DD has always been good at nursery rhymes but not consistently - she'll suddenly start singing one of the ones she knows at random intervals but never when you ask or in Stay and Play.

Oh, and a setback - the Paed is off ill and they have cancelled her appointment next week with no new date yet . Gah!

Needing, you've already had great advice. Just thought I'd add after you get hold of the Hanen book, if you find it really useful there's an ASD specific version which is aimed more at children who don't see the need to communicate rather than want to communicate but don't have the skills. www.winslow-cat.com/more-than-words.html The website is a fairly cheap source for It Takes Two to Talk, also.

Thanks EllenJaneisnotmyname .

Hi again, I am just writing to update you all and ask for some more advice please .

When we saw the Paed, DD was seen as able to manage her self care appropriately for her age, and also physically confident and healthy. However, she was still concerned about her comunication skills and her social interactions seemed not to be what they should be. So she is seeing us again soon (about 2 months on) and is going to arrange more formal assessments if she is still concerned. However DD has been improving a lot lately. She has begun to sit (with me) for song time at toddler groups and is mostly ok at snack times (although she is still a bit grumpy about anyone else getting fruit!). This has all been recent progress.

I have recently started to take her to a playgroup which also works as a Stay and Play (so parents can stay or over 2s can attend on their own, like a playgroup). She has been going for a few weeks and is now managing to sit down for snack time and song time. However, she does not like being left and when I have left or just 5 minutes she has been clingy for the rest of the session. She also avoids eye contace and hides when any of the staff address her directly. They keep trying to encourage me to leave her there and just go home for the 2 hours. She has never been left anywhere before and I am in no rush to leave her, but I am starting to get fed up of them constantly trying to push it. I honestly think she'd be better settling in a bit more and getting used to the adults and the routines a bit more before I leave her - she doesn't qualify for a nursery place until January and then she has 5 terms until reception. If only they would leave us be but I am being made to feel like a fussy mum. How should I handle this? They seem to think I am a fussy mum but then they haven't seen her until recently and don't know the big jumps in progress she has made. i just feel like there's no need to make her so upset by leavig after only a week or so (we have only just started there!). Also I joined with the intention of staying for some time more with DD before leaving her - and waiting until she was more secure. They just seem to be constantly badgering and I am starting to feel uncomfortable.
Just to make this clear - it costs the same whether I stay or not, and there are other parents there for the stay and play so I do not stand out. DD is 28 months now. Any advice?

*communication skills

(sorry, my keyboard sticks)

PS. Just to say she doesn't really do much meaningful communication with anyone. She has recently started yelling byeeeeee when we leave somewhere or get off a train and will sometimes say hello. She knows colours, counts to some extent, knows animals and noises they make etc. She doesn't put 2 words together yet and until recently was unable to tell me whether she'd like eg Milk or Juice (only just beginning to).

your DD sounds s&l wise very much like my DD when she was approaching 3.

has she ever be seen by a SALT? probably would push for a more detailed assessment. maybe also worth reading up on ABA (loads of posts on here if you want to run a search.)

have you had a look at the hanen books (it takes two to talk & more than words)? they will give you some good strategies to use with your DD.

and do not rely on the 'the system' too much. ime, you will not get a lot of help that way.

Hi again chocjunkie and thanks for your post.

Yes she was seen by a SALT twice - both times not that much help unfortunately. DD didn't really speak to her at all so she was going on what I said. She didn't have too many suggestions. The first time she gave me the "Talk with your child" sort of booklet they give out in Bookstart packs that just suggested all sorts of obvious things like "Read with your child" and "Try a nursery rhyme!" The second time she'd heard no follow up from the Paed appointment and so she knew nothing of the interim. She again couldn't get a word out of DD, who clammed up.

I have the book and am finding it useful as it does as you say have some very solid strategies to use.

I am back at this playgroup tomorrow and am going to be firm as she has only been going for a couple of weeks, is really reluctant with unfamiliar people and there are some 7-8 other parents and carers there with kids so it is really no odds to them if she stays alone or not. I just don't want to undo the super progress by making her main preoccupation the fact I am not there, She is coping so well with the new surroundings and getting along with the children. Does this sound reasonable, because when I suggest it to them I might as well have 2 heads?! I have explained the concerns to them but they are acting as though this is a non-issue. I worry they think I am overprotective but I am not. My DS was left in day nursery from a young age out of necessity (worked PT then) so it's not like I haven't been through it - just feel she has enough to deal with right now. Does this make sense?

How is your DD now chocjunkie? How are you finding people deal with her day to day? I am imagining with a diagnosis you get recognition but it also brings its own issues?