Concerns about dd 2.5

[BBQsAreSooooOverrated]

Hi,
I know nobody here can diagnose I just wanted to get everything out really.
I'm getting increasingly concerned about dd2's development or lack of :(

Dd (2.5yrs) has been referred to the paediatrician after her 2 yr check and 2 additional assessments. She has no proper words although she did have several from about 18m. She used to say 1, 2, 3, eieio, no more, bad, juice and her brothers name. She now says none of these :(
She has had an audiology appt to rule out hearing issues as she doesn't respond when we call her very often but that was inconclusive so we're waiting for another. She doesn't point or wave and she uses my hand to get things she wants.
I don't think she plays very well instead preferring to line up her happyland figures or put several pencils in her hand all the same way up and same height. She chews everything, books, pencils, etc.
She's not a brilliant eater and won't try new foods but I know this could just be her being a fussy toddler. Her sleep isn't good, she's still waking 1-2 times a night and she can take up to an hr to fall asleep every night even though she's obviously tired, she'll just bounce up and down on her bed.

She loves bouncing, she'll spend ages bouncing on her knees when downstairs and she also flaps her arms and wiggles her fingers a lot.

Seeing it all written down im feeling quite worried but I'm not sure if these things are anything to be worried about?
The paed referal can take 13 weeks apparently so it won't be for a while that we can begin to get answers/help.
Is there anything else I need to be doing in the meantime?

Thanks

[Ineedmorepatience]

I can see why you are worried! There are quite a lot of things in your list that could be red flags! But you are doing exactly the right thing by going to see a paediatrician!

Someone posted a report on here a few yrs ago which said that Mums who think their child has additional needs are very often right.

Trust your guts!

Remember whatever happens she will always be your wonderful little girl.

Good luck

[bialystockandbloom]

I agree there does sound cause for investigation there, and it's good you're already in the system for assessment.

In reality, the assessment will (or won't) give you a diagnosis, but ime other than a few leaflets from the NAS (national autistic society - I'm assuming you are thinking along the autism lines?), you're not necessarily going to be given much more practical help than that. If you get a diagnosis you may be able to access the NAS Early Bird workshops.

So in practice, what you can do yourself to help her with development will be just as helpful. We actually started intervention with ds before he got his diagnosis (asd) as we knew that a) he was likely to get this diagnosis, and b) with or without it, he needed help regardless. We chose to start a behavioural intervention (ABA/VB sometimes known as Early Behavioural Intervention) which may be worth you looking into, though not it may not suit everyone and can end up being quite expensive. One place to start looking at this is Mary Lynch Barbera book the Verbal Behaviour Approach. Also search these boards as there are loads of threads about it.

Would be worth googling for early support, early intervention, etc, and look at sites like NAS, Autismspeaks, and other therapies like Floortime or RDI.

I haven't used them myself but have heard lots of praise for the Hanen books for helping with communication.

Is she at nursery?

[BBQsAreSooooOverrated]

Thanks for your replies and info.
It is autism Im wondering about, she seems very happy but does disappear into her own little world a lot. Before the hv assessments I thought maybe I was just being a worrier but now the referal has been made I'm thinking there must be something to worry about.
She's due to start at the local school nursery in September next year but not sure what will happen if she's still not speaking /toilet trained etc. I joined a baby group and all the other toddlers are doing so well I just feel sad my dd isn't doing the same things/saying funny things and might not ever. I've stopped joining in so much, hopefully there's some local groups with other similar families.

[anya1985]

I agree with the rest there are definitely some red flags that warrant a referral. If she does have asd early intervention and diagnosis is key. You can help her get the help she desperately needs rather than adopting a wait and see approach. My son was diagnosed at four and a half I started to have concerns probably around the same mark as you at two years old. He's still young and I have started lots of therapy for him, but had I known two and a half years ago and not told my gut feelings were wrong and I'm such a worried mum (I really am in general lol) he would have got even earlier intervention ! An assessment leads to two outcomes - if she has asd or not. Lots of boxes have to be ticked to qualify for a diagnosis it has to be significant difficulties/delays in the areas they assess for. Good luck hope all goes well x

[Ineedmorepatience]

The thing about nursery is that they will need to meet her needs! If she isnt talking and still in nappies well then that is her developmental stage and they will have to get some support for her to help her to access the early years curriculum!

I used to be an early yrs senco and each authority has a pot of funding to provide support for children with additional needs!

It might be worth contacting your local childrens centre and asking if there are any groups that meet there. The staff there will have had training and should be able to access the early yrs team to get your Dd on the radar.

The sooner she is known to early yrs services the better and that is something you could d now! She might even get some home teaching before september.

Keep coming on here, you have found the best place for support

[bialystockandbloom]

Might be worth seeing if there's a speech & language drop-in near you - the Hv or GP might know.

Also Contact a Family may be useful.

At our local children's centre (where ds had his assessment) Contact a Family and Parent Partnership used to have drop ins, but not sure if that's nationwide (we're in London).

Try not to worry about nursery yet - she'll have had her assessment by then so you'll know more by then. Nursery or pre-school should have support set up (senco or equivalent), and if you're in the system they can organise a Team Around the Child to coordinate whatever support she might need.

[LadyDowagerHatt]

Sounds like a tough time for you .

There are a couple of self referrals you can make whilst you are waiting for the assessment which I would recommend doing. Firstly speech and language - www.afasic.org.uk/help-for-your-child/speech-and-language-therapy/referrals-to-speech-and-language-therapy-slt/ (the site explains this and also has some useful resources).

Secondly contact your local portage (or in our area the service is called early years intervention). Ours have been brilliant at ensuring my daughter has all the support she needs in her playgroup setting (in her case it is motor skills rather than ASD) and co-ordinating all the different support providers e.g.physio, occ therapy, SALT etc. In our area they also have an ASD specialist who works with the parents and the early years setting.

[OgreIt]

In addition to the advice above, check out the book An Early Start for Your Child With Autism. It's based on the Early Start Denver Model, which is a great approach for helping autistic children, and has loads of tips you can start trying now before diagnosis (if it is indeed asd... The ideas in the book are based on play so won't hurt if it isn't asd). We found it really useful with our ds1 (I don't work for the publisher, promise!).

[AgnesDiPesto]

Your concern are the same we had with DS at 2.5, he had lost skills too and continued to lose them for about 6 months. He went down to just 2 words from having phrases. We did ABA and that was the point he started making progress. We got a diagnosis very quickly because of the regression but that didn't bring any meaningful or effective help. ABA was the only practical thing that worked even throughout 18 months of SLT, Autism outreach and 1:1 in mainstream nursery. He learnt nothing there, only at home. We got trained ourselves in ABA as we couldn't afford to hire tutors and the 10-15 hours we managed a week made a huge difference. He is now 8. He still does ABA but very different than the early intervention type. He goes to mainstream school 7 half days with an ABA tutor and blends pretty well into the class. His language has been slow to develop again but continues to progress. His level of understanding now is more than I hoped for. I don't know where you are but look at Facebook ABA4ALL site which lists organisations giving bursaries for ABA (there were none of these when we needed it). Caudwell will also give an upfront grant that can get a programme started. Don't wait - promises of autism swat teams swooping in and providing wonderful services turned out to be totally untrue.

Know this is the worst time. even if your fears are confirmed it does get better and easier and your child still learns and progresses albeit in slow motion. Finding something like ABA means you can put your energy into something that works and when you start to see progress that makes it much easier to deal with.

My DS withdrew and shutdown when he regressed so i found him very hard to reach. I didn't find ABA or Hanen books useful, i needed someone in my house showing me what to do. It does depend how receptive your child is I think, DS social withdrawal was so severe I (&nursery staff) couldn't use the usual SLT / outreach stuff - that depended on him having some social interest in us that just didn't exist then - we have had to teach it and build it.

The other thing we did was apply for statutory assessment immediately (for a Statement now EHCP). The request got rejected as premature (we knew it would)- but we appealed and they backed down. We were told initially they wouldn't assess him until he was 4 or 5 and then they would drip intervention in slowly before considering special education. I bet even if we had waited they would still have made us appeal. As it was it took from 2.5 to 3.11 to get his statement with the right (ABA) provision in it. But that was still very early by many peoples experiences on here - its common to have to appeal whatever stage you apply. It made a huge difference having a robust Statement in place before we had to choose a school.

Going on a PECS course is also worthwhile its a basic intro to ABA methods and in using symbols to support communication. Pyramid run them around the country.

[BBQsAreSooooOverrated]

Thank you everyone for your replies, all the information is really useful and will give me something to look into. I'm expecting it's going to be a long, bumpy road but I'm glad I've found support on MN.

[BBQsAreSooooOverrated]

After a long wait we finally have an appt next week with the community paediatrician. I'm not sure what to expect to be honest. Part of me is worried they'll brush us off and say she's fine when I don't think she is :(

Her 2nd audiology appt was still inconclusive, they think she may have some hearing loss which could explain the lack of speech and responsiveness. They've suggested waiting 6m to retest or a sedated hearing test.

No progress on the speech front really, occasionally she'll ask for something eg apple, nana then she'll just stop using the word. No 2 or more word sentences either. Dd is 3 in May, the older she gets the more worried I'm getting :(

Still likes to line up her toys rather than play with them in the conventional way and she loves to hold pens/pencils/cutlery in her hand. She can happily pick up and put down a handful of pens/pencils over and over for 45mins!

At Christmas she wasnt interested in opening any presents or playing with her new toys, she wasn't distressed just not interested.

[AntiquityReRises]

Your opening post sounded just like my ds2 at the same age, especially as he'd also lost his handful of early words. He had a preliminary diagnosis of autism at the first visit dependent upon the outcome of hearing and genetic tests (sparked by the regression and cafe au lait spots) then firm diagnosis a day or two before his third birthday.

I took a document along to the paediatrician with everything I could remember on it from the first two years, including type of birth. Then information under broad headings like play, social interaction etc. I'm glad I did because it was easy to forget and of course I cried plenty.

I was surprised at the time it seemed so cut and dried but in hindsight, and now, he's pretty typically autistic.

His speech also developed in the same way, use a word then not for months and months.

Have you done the MCHAT ? I took a highlighted copy of it to the initial GP appointment and she sent it with the referral.

I'm just saying this because if you really feel she has autism (which doesn't also rule out hearing problems) then it's useful to have all the supporting information.

I would also look for a nursery who can fully support your child. For us, nursery 1 considered "support" to be giving a dinner lady extra hours and only allowing him to be there 1.5 hours for twice a week. And the one time he tried story time he was distressed as they tried to keep him sitting and listening and they said I should pick him up before hand again. As nursery 2 pointed out, how's he going to learn to sit there if he's not there! His nursery have been wonderful eg. at story time he was told he had his own special cushion to sit on, and at first he wandered the room during it but they noted over time he was getting closer and closer. He's been there a year now (he's 4) and LOVES story time! I was so clueless to start with, but my go to thing is going to be "so how you will support him doing/learning x?"

[AntiquityReRises]

I know it might seem hard for you to see her not playing with things in the usual way but I love her little lined up toys and she's sorted and grouped them by type! Clever girl isn't she!

[BBQsAreSooooOverrated]

Thanks she's a lovely, mostly happy little girl. She's very good at arranging her toys in groups so she can clearly tell they are different. :)
I did the mchat recently and she scored 13 I think it was, the result was high risk. Think I will print it out thank you, I have also written a list of my concerns so I don't forget anything.

Her name is down at the local school nursery, 2 of my dc have been there but it is pretty school like and I am concerned it won't suit her, she's also not interested in potty training yet. I'm glad your ds enjoys nursery now.

[AntiquityReRises]

My ds scored 16 so similar. The nursery he's at now is private but takes funded children. His previous one was a school style one (standalone between two primaries without nurseries) and really not suitable. It's worth looking around other places. At the time ds started the first nursery I desperately wanted him to just do the "normal" stuff that "normal" kids do and it's hard to let that go. Especially with other kids and you want them all to have gone to the same place and have those shared experiences.

[BBQsAreSooooOverrated]

Thanks for the nursery info. As the time gets closer I think I am going to have to rethink the nursery choice. Sometimes it is upsetting and I wonder what her future will be like but she's oblivious and happy in her little bubble so I should probably take a leaf out of her book and worry less!

[hopedance]

I could have written your post a few years ago - exact same issues as we were going through, with losing words, or hearing a word once then never again, lining things up, eating issues, sleeping issues and so on. I got him referred for hearing tests at 15 months after losing his words, then 18 months referred for ASD assessment. He was diagnosed with autism aged 2 years 2 months. He is 4 and half now, and talks fabulously but now drives me up the wall with his rigid routines and rituals! He was originally flagged up as having possible hearing issues after his first test, but the second test showed it was transient and his hearing was fine.

What I wanted to say though, was that regardless of whether your DD has ASD or not, you might want to think about ways you can support her at home to prepare her for nursery and such like. After my DS was diagnosed, the paediatrician said "Now he's been diagnosed, I'm sorry to say this but there isn't anything we do, we don't offer any treatment for autism, just some speech and language therapy and yearly check ups". At which point I realised very little had changed except having a name for it.

We immediately started using a photograph/picture exchange system (PECS) to get him to start requesting food/drinks/toys using a system, and shortly after started teaching him Makaton. I'd strongly advise you to look into doing something similar to help her communication skills so that when nursery comes around, she will hopefully feel more in control being able to communicate if she hasn't started talking yet. I suspect learning sign language aids their speech development because they realise that the interaction gets them what they want, and their understanding and motivation to communicate gradually increases.

[BBQsAreSooooOverrated]

Thank you for responding. Pecs is something I've read about but I wasn't sure with her lack of pointing if it would be helpful at the moment, definitely something I'd like to try. Makaton is something else I'm interested in. At the moment to communicate what she wants she grabs my hand and shoves it in the general direction. I'm hoping she might develop pointing as it would really help with her frustration.

[hopedance]

I taught DS how to point, hand over hand. Put your hand over her hand, and get her pointy finger out, point to something she likes, then give it to her.. over and over. It works well with sweets ;) The instant reward teaches her that pointing is useful, and eventually she should do it by herself, and increasingly over time she may apply it to different circumstances. PECS isn't depending on pointing though, if you just velcro some pictures up somewhere, she can pull them off or put your hand on them to pull them off. Once she realises how rewarding it is to communicate with you, it can open the door to her learning many more skills.