2yo, speech delay, hearing test, various referrals... just want some experiences please

[jauntynomates]

Will keep it as brief as possible for now as I could probably witter on!

DS 2.3 has been under speech therapy for 2 months, mainly group therapy, simple strategies at home. Generally given the impression it was nothing to worry about and delays run in the family.

Things are changing a little and it's just got me a bit confused. Went for a hearing test but he couldn't settle, he doesn't settle immediately in new places and they wanted him on one spot, low lighting etc, when the sounds started he couldn't take it. Stopped then and there and doc said not to worry, they'll book us in for a longer test slot to give him time to settle.

Got letter today for new appointment but he has also been referred to the multi agency team to review his communication and development. CM has just done 2yo review and physical development is strong but everything else he is down as 8-20mo, with one or two 16-22mo (following EYFS). We went through it together and I agree with the evaluation against the benchmarks. Also recently had 27mo review with HV and he is being referred to a team to get help with his concentration skills.

Concerns seem to be over lack of speech (not just speaking but also understanding), he understands a few words like 'no' and 'shush' and his name but associates pretty much everything by sight (eg gives us his cup when thirsty but doesn't understand the word 'cup'). He also has a short attention span often and flits regularly between different activities (1 min here, 1 min there), but does sometimes settle in for 10-20 mins on an activity.

He's otherwise gorgeous and funny and sweet no problems with sleeping or eating and behaviour is generally good, occasionally throws something if he is upset but calms down very quickly and follows our instructions to behave (eg quiet, away, get down). He is independent and whilst he likes playing with others he doesn't tend to engage in structured activities (eg group play at CM's), instead he watches and evaluates whether he likes it and then will do it later alone if he does. CM says he is wary of new people, which is true.

We've generally felt that he is just a bit strong willed and independent - always has been! - but that otherwise he is just a toddler and has his own quirks. But more and more HCPs, childcare professionals and sometimes just random strangers seem to be leaning towards him having behavioural issues.

Have you had anything similar? Maybe it is just toddlerhood coupled with speech delay? Or even hearing? Getting a bit tired of people expecting my 2yo to be different.

[myredcardigan]

I was just about to ask if you'd find the Mchat test but I see that's slready been suggested. I really don't know why HVs aren't doing the mchat at 18mths. It would save delay for do many kids. One of my 4 had a severe speech delay but I didn't worry about communication disorders because his understanding was always fine. Can your DS follow simple instructions like, ' DS get your shoes, please.' The paed we saw re speech said that over 95% of 2yr olds should be able to do that no problem. I think mine could do that by 18mths. Does he point both at what he wants and what he wants to show you? Most children start pointing around 10mths and the vast majority of nt kids are pointing by 14mths. The mchat should pick up kids that aren't pointing by 18mths. Pointing is a biggy in terms of asd. When we saw the paed, DS walked in and up to a fish tank in her office and pointed to the fish whilst turning around to see if we were looking. The paed said immediately that she was already 90% sure it wasn't autism due to that. Before that I had no idea to look out for pointing. Why aren't the HVs checking this. Paed also asked about showing books and toys and stuff and sharing snacks with us. Also asked if DS at around 1yr picked up bits of fluff from the floor and showed us. I couldn't remember that one but have since noticed my other children doing it. Just mentioning all this in case it's standard paed stuff that they may ask you at your appointment.
The paed did also say that many toddler traits esp in boys overlap with asd traits and it's sometimes difficult to distinguish easily without a thorough assessment.

The main thing I learned is that an NT toddler should want to communicate, almost desperately with you, even when speech delay makes it difficult or impossible. So even if they can't speak they're tugging at you, pointing at everything and showing you stuff. The paed saw all this with DS fairly early in in the assessment so advised the Hanen book and sent us off. By the time he was 3, you couldn't really tell the difference between him and my child who was speaking in sentences by 18mths.
Good luck with it all. I'd recommend the Hanen book whatever happens as it's really super.

[jauntynomates]

DS has limited understanding, so if I were to say, "Get your shoes please" he'd probably stare at me, smile, and continue with whatever he's doing. Not in a I'm-not-doing-that way, he genuinely doesn't seem to get it. He understands things like 'Shhh', 'No', 'Away', 'Come here', 'Hot/dangerous'... all somewhat negative things He understands when we say 'goodbye' or 'cuddle' but I think it's the actions he understands (waving, open arms) more than the words themselves. Even the other things I mentioned have an associated action or facial expression. Everything hinges on there being something for him to see, like an item or an action, he understands that. The same for nappy changes, going out, etc, he doesn't understand if you say it, but if you show him the nappy or his coat for instance then he understands what it means.

He does want to be with us, show us things, he will take me by the hand to his room, pull out one of his large cushions, sit me down on it (he pushes me backwards!), then he will start getting out the toys that he wants us to play with together. If he wants me to do something he shows me as best he can, and then gives it to me to do. He likes looking through books and will give us hugs and kisses and likes to be lifted up. All actions again - for hugs he puts his arms out, kisses he purses his lips and puts his face very close, lifts he puts his arms up.

The pointing is tricky. He used to point at things he wanted us to do, like at the harness buckle to get out of the highchair or buggy, but he has only recently started pointing at what he wants (eg box of cereal) or that interests him (eg out and about). He has been sharing things with us for ages, as well as trying to feed us, and he tries to share his beaker with his baby brother which is unbelievably cute. If he picks things up from the floor he usually sticks them in his mouth

I'm going to look up the Hanen book and get some more tips from there hopefully, thanks for the recommendations.

[myredcardigan]

Have you though about using picture clues or PECs to help with his comprehension? It seems from what you say that a visual clue really helps aid his understanding so I'd hang my hat on that for now as it will be useful. So does he index finger point at things he wants to share with you when you're out and about? Does he point then turn around to check you've seen what he's pointing at? It's great that he shares and tries to share his drink with his brother. Def get the Hanen book. It's quite pricey so have a look on eBay or in your local library.
Good luck. Try posting on the SN bit too and ask for strategies you could use for speech delay whilst you wait for assessment. Posters there really helped me when we had the delay.

[Pomegranatemolasses]

I was going to suggest Pecs or some other visual aid there also, as he sounds like a very visual learner.

DS2 is also like this, he has told me that he 'thinks in pictures'.

[jauntynomates]

I hadn't heard of PECs but that's a really good idea, thank you, just ordered some! The SLT said she had some flash cards for songs when she observed him at the CM's and he loved them, and thinking back he was the same when we did a music activity that also had flash cards to say the name of each song, so I think he could take to them well.

Yes the Hanen book is a little pricey, I haven't found it second-hand but the library is an idea, otherwise I may pick one up soon (nearly payday!).

Hasn't considered the SN boards but will head over there. So many boards on here, been on MN for years and still get lost/find new bits

[jauntynomates]

Index finger points to some things, will point and make a noise and face, usually like a surprised look and go "Ooh!", and might look to us after or at the same time. It's a very recent development so I couldn't say exactly how often it is but it seems to be at least a few times a day.

[Pomegranatemolasses]

The more you post jaunty, the more he reminds me of DS2. Speech and language delay can really mimic many of the symptoms of autism. This was something which was always flagged for DS2, and which actually became an issue for us again when he was at the ripe old age of 12.

like you, I was always open to what would help DS, but he never seemed to be autistic to me, because of his very sociable nature. I do now feel that we 'missed the boat' in not realising he had adhd earlier - he has so many of the classic symptoms of it!

[jauntynomates]

Pomegranate It's very interesting to hear your experience. If you don't mind me asking, what would the classic symptoms be that your DS had/has? I have been on the NHS site and Googling but it all comes across as it bit vague or confusing - maybe because there can be all of these crossovers with different behaviours, diagnoses and speech delay and so on, but I'm trying to compare DS a bit with some of the different typical signs of things.

We had the developmental paed. appointment today and also the hearing test. Paed. happened to be the same one present at his first attempt at the hearing test (who subsequently referred him for higher level hearing and multi-agency), and also did the 6 week check for DS2, so it was actually nice to have that link as he already has personal experience of DS1 and DS2 (and me hanging about!). He has referred DS to the Complex Communication clinic and will be checking in with his SLT so that all of the areas can be joined up. Following the assessment in the appointment he said DS is clearly very able physically, fine and gross motor skills etc, but also clearly has a very limited attention span and understanding, along with expression. Also said he could tell DS was very good humoured, friendly and affectionate which was lovely Sounds silly but with some frontline HCPs I've just got, "He isn't potty trained? He doesn't speak? He doesn't pay much attention, does he..." which has frustrated me a bit, so it was nice to see his personality being appreciated too.

The hearing test went so much better than the first attempt. They tested 0.5Hz, 1, 2, 3, 4, or something like that. Anyway at the lowest Hz he was fine, the next level okay, the next they couldn't get a score, and the next poor. Doctor confirmed glue ear so he has another test in 2 months to see how he scores and check his ears again; if he still has glue ear they'll start talking grommets, but she said that although it may be a factor his speech and language delay is too significant to be solely as a result of his hearing.

Paed. also said how great it was that we'd got in early, as if it's easy to resolve then good, if it's more complicated then we're in there at a good time to help him before starting school. I have to say it's because of MN that I sought out the SLTs originally (around 20-22mo, I had a thread under a different name back then), now at nearly 28mo he seems to really be in the right place and in need of that support so I feel confident that we are going to be fine and be able to help him a lot.

I don't normally write such long posts but on this topic it feels difficult not to!

[jauntynomates]

Well just thought I'd give an update in case it is of use to anyone.

DS1's hearing has improved a lot, he still has glue ear but has normal responses to the hearing test. They want to do another test in the autumn - I don't remember what it's called, but something along the lines of sticking monitor things on his ears or thereabouts to check function in different ways, apparently they give melatonin if the child can't settle so that they can do the test. But to do that they need the glue ear to clear, so they're waiting and seeing, if it persists they will consider grommets.

With this his understanding has come on massively, which is wonderful, we can say some things to him without visual props - like 'bed', 'nappy', 'food' - and he understands. He has calmed a lot as well. We went to a café today and tested the waters a bit, he sat on a normal chair at the table and we gave him some toast and juice and he just sat there happily whilst we ate, he had some food, stared out of the window, and occasionally played with his dinosaur. Quietly! It was amazing.

He still doesn't speak yet but occasionally he copies/says words; in the bath the other day we were making bubbles in the water and he said 'bubble' a few times at the appropriate time, which rather knocked me sideways with surprise

We are waiting for his assessment with the multi agency team, should be 5 sessions of observation, for SCD, ASD etc. I'm chasing them up on it as I will be starting a new job in a few months and the opportunity to take him to these appointments will diminish at that point for a little while. He starts a new round of speech therapy in the new school year too but that's also borderline due to my new job, if I can DH there then whilst it would be better to keep my consistency it would be better than nothing, so we'll see. But the main thing is he is coming along great, and we're happy

[jauntynomates]

I'm updating as I know I've read threads and then wondered what the conclusion was!

DS1 has a provisional diagnosis of autism. I understand his behaviour a lot more now and what is linked to his diagnosis. He is still coming along wonderfully and it's lovely to see him develop, but I guess I am a bit more honest with myself now about some of his issues (eg noise sensitivity, need for alone time, extra support required).

I am over in SN Chat and live there now Under a different name I think, I lose track...

Thanks again to everyone who gave feedback here, it all helped throughout this process - which isn't yet concluded, we have more assessments, observations etc - and helped me to see beyond the speech and language delay and really think about that aspect of it,