Toddler behind on verbal skills but he won't sit or focus enough for us to try to develop them

[mamma536]

DS is 2.5. His gross motor skills are brilliant fine motor skills are ok. Communication wise I think he has actually regressed. He used to try to repeat words when we asked, but doesn't anymore. He's stopped using words he used to know. His spoken vocab is probably down to milk, please, no and asking for screens (we are limiting).

We know he understands more (he'll carry out a few instructions and will occasionally fetch something for us) but he won't focus on us to even listen much less carry out any instruction. We try to praise as much as possible, but he doesn't seem to have any interest in pleasing us, which I thought most kids would have, just himself.

We try endlessly with animals, colours, instructions, books, but he has no interest. He almost never sits down for a book. I took him to a playgroup once and tried to sit down to read with him. He ran off as usual, but a little group of other kids had also sat down with me to listen to the whole story - I've never experienced that before and it makes me want to cry.

He adores pouring water and beads, and loves trains. We indulge him with a homemade pouring station and try to encourage him with trains, but it's a bit hit and miss.

We had his 2yo assessment already and were given some games and exercises to try with him to encourage his communication skills. But he has no interest, just wants to run and jump around.

It bothers me that he won't look at me much of the time and I can't get his attention, mainly because he's zeroed in on something else. That said he does look at me when he wants to and have cuddles.

I'm just frustrated that we can't do all the things your supposed to do to help them develop. We can't read with him and end up reading at him which can't be much good. So we're left with lots of physical activities which are exhausting.

Do we need to worry and look for more help? Or should just keep trying and see how it goes? His dad didn't talk until 3yo and his aunt (DH's sister) was also hyper at his age and they're obviously fine now. I thought there would be this massive leap in communication between 2-2.5 that I was really looking forward to, but he seems to be going backwards in some ways.

I’m glad the ST are working so hard with him and giving you lots to follow up on.

Did you get the hearing test done?

A lot really depends on what is a available to your son locally. My daughter did ABA for some years and it helped her get some basic skills to work with because before that she couldn't imitate. There was very little available where I live in the way of provision so I had to find something myself. Where you are it may be very different.

Also, nobody should expect you to try to direct him all week when he's not able to. With the right support, even at 2 he will be able to learn. Autistic kids just don't pick things up naturally from their environment like NT kids do.

I have looked into hearing tests and have a couple of recommended doctors. Again I'm very uncertain - a few of the therapists recommended it, others and the pediatrician we skeptical that DS would be able to sit through it. We'll pay for anything that helps of course, but it's so horribly expensive here that I'm reluctant to try and fail. I have a vague notion of trying agree a few weeks of therapy but not thought this out fully.

All the OTs and STs had the same approach when we asked - child led, floor time. The ST we chose said her approach is more eclectic and she's certainly going with DS interests and gently trying to push him to do new things (not completely successful yet).

He sounds rather like my DS.

Even by the time he went to school he wasn’t saying much.

Odd behaviour/obsessions etc.

Saw a paediatrician when he was 4 who said he wasn’t autistic, “he’s just a little slow”.

He was diagnosed with Aspergers at about 7.

He’s doing his A levels at the mo. Wants to be a solicitor.

Can your DS point at things? DS never did - although he used to grab our hands to point towards things he never got the hang of it himself.

Mama the thing is if it is hearing and he needs grommets it’s a very quick win just to get them put in. I wouldn’t believe anyone other than a paed audiologist who tells you the test won’t be possible.

@JillAmanda I'm glad for your DS :-)

DS does point sometimes. He does a lot of hand grabbing and dragging too.

@Onceuponatimethen there are a lot of sensory issues that are not hearing related. The OT said we had to address his tactile defensiveness before we could make much progress on anything. We are hoping that if we can address that, we can make some progress with OT, hey his attention span up and then try a hearing test.

It’s so difficult isn’t it when you are funding it all yourself and there are so many different avenues you could be going down! You’ve done lots of brilliant stuff already in a really short time.

I see what you are saying completely. The only thing I would say is that the firm advice we had with a very similar child is that if hearing is not in place the speech cannot develop. We were so sure there was no hearing issue and were really shocked when the test came back saying hearing is very bad. We didn’t realise they can hear some frequencies and not others - so our dd could hear planes in the sky and we thought that meant she was fine!! We were told hearing should be checked as a top priority’s day for us that turned out to be right.

OTs are fantastically skilful but in my view shouldn’t be advising on whether a hearing test is appropriate.

Does ST not recommend a hearing test? Usually they are very keen for parents to get them done

Thanks for your advice. Will talk to both OT and ST again and reconsider a hearing test.

It really is expensive 😟😟😟. It's about 1/3 of my salary before tax in an already very expensive city. We were also strongly advised by another therapist to find an early intervention centre and both our therapists agree it can be helpful - we are on the waiting list for the summer but it is the equivalent to £1400 a month for just 3 mornings a week. I don't know how will afford it all.

Our pediatrician also suggest trying to go gluten free and reduce milk/casein in DS diet. it will be hard as DS is a bit picky. I haven't had much a chance to research yet - does anyone have advice on where to start?

for you OP as it sounds like you are going through a very stressful time.

I think that the private system can be very difficult to navigate when you are used to the NHS. In the NHS you know that resources are limited and so if you get referred to a particular HCP by eg your child's paediatrician then you know that someone has decided that that is the support your child needs.

When you are finding and funding the services yourself then the pressure is on you to choose the right one. Also, our expectations of those services can be higher because they are so bloody expensive!

Our DS (almost 3 and completely non-verbal) sees a lovely private SLT. I find her sessions quite repetitive, but this is what DS needs. The progress he is making is quite slow to our eyes but that is because we just want him to speak when he is actually acquiring the foundational skills for communication ie listening and attention.

I can't say whether what the OT is doing us appropriate but I just wanted to sympathise / empathise with the worry about getting the right support and putting your funds in the right place. I would say give the OT a chance (as someone else said, at least 6-8 weeks) and see if you think it is useful. Also, and I mean this very kindly, there is unlikely to be a quick 'fix' for your DC's issues, so you may need to adjust your time expectations a little.

All the very best to you and your boy

@AshGirl thanks for understanding. You got it - the pressure to choose the right therapists is immense when I keep hearing things like "you only get one shot at early intervention" or our pediatrician (who is used by two STs we spoke to) said she thought 2.5yo was already late to start treatment (but it still makes a difference).

We'll certainly give it 6 weeks and see how we feel.

You can try to get him an EHC plan even at 2 years old. The Local Authority will tell you otherwise but children do have them this young. You can apply for a statutory assessment yourself and then ask the local authority to find the provision you think he needs.

A lot of children are quiet ones, he's only two yet!! He probably has a decent vocabulary waiting to go, until then just have fun. Indulge your own silly side and play the physical games but make up features and talk through them constantly, in that kinda loud, slightly bossy to strangers listening, mummy voice that you hear mums in supermarkets using. Do funny voices and make fun to say slogans, be a fun mum and you'll just both have a tonne of fun and relax into your relationship again. All the best to you! 😀

Thank you for the good advice!

We're about 6 weeks into therapy. The therapists have a very good rapport with DS and are great at introducing games that encourage him to communicate. They see a lot of improvements already such as DS pointing and babbling during sessions. We weren't convinced at first because they got excited over a lot of things he does at home. But they said it's a positive thing when he starts to do it during therapy. We've seen tiny improvements - he's saying words that he used to use, he's making more eye contact and communicating with us more and really looking at books now, but just flipping. The ST says that it will take more work for him to start to put words and actions together. On the down side his tantrums have gone up in scale and the OT says we have to figure out what the source of the frustrations are.

DS also has a place at an early intervention centre in the summer - a really good one that does one-on-one ST and OT, and is recommended by both parents and therapists.

A different ST who did a short assessment on DS said that he would benefit by going into a centre now. Our therapists think it is too early to get much out of it. I would be sorry to lose them as therapists tbh but we can't afford to do both the centre and separate therapies.

I know I shouldn't compare DS to others but it is hard. I'm going out of my way to avoid friends I made when DS was a baby because the differences are too stark. It's hard to see younger kids waving and saying hello when DS is not there yet. This whole "children are like sponges" phrase makes me so sad and a bit anxious - are DS' sensory issues blocking him from all the learning and knowledge that all other kids are doing? While other kids are picking up dozens of words a week we are still on "more", "go", "where!" etc etc. All the time we spent reading books "at him" rather than "to him" because we could see that he wasn't really listening but we tried anyway - was it all futile? Will he be able to catch up or will this time be lost forever? He's going through a biting and pinching phase and the OT said not to worry about trying to explain why not to do it because he won't understand, and I wonder what other things we shouldn't be bothering with because he's not there yet. The improvements are gratifying to see, but they are so tiny. I too celebrate the wins and not think about the bigger picture too much because it makes me too sad.

Google photos highlighted a "this day one year ago" video back to me - it was a video of DS and DH dancing - he was clapping, mimicking DH, babbling. Just that night we had been doing the same thing, but he does less of it now. It broke my heart a bit to see how 18mo DS used to be and since then how he's made no progress and regressed. Also that the ASD signs were really strong then as well but we didn't know.

I would follow his lead and just talk to him about his interests. My little boy was similar and we went on a programme called The Incredible Years for SEN parents (my DS is autistic) , they told us to play alongside them and narrate what they were doing very simply so the child associated actions/ objects with meaning. So you could do water play with him and use simple narration:
Water into red cup
Water into blue cup
Pouring
Splash
More water

Etc.

We did this with our DS and in the space of 3 months he went from 5 words to over 70 words. He's 6 now. His speech and language is still behind other kids but he is developing a good range of language, albeit at a slower pace.

I agree with some of the other posters though - you might want to get a referral to a paediatrician or something to rule out issues like ASD or hearing loss etc.