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.

SinkGirl what an amazing idea about the sn dentist. I really wish I had thought of this with my dd when she was really struggling with brushing.

My db uses an sn dentist for his child (born after dd has stopped being stressed out by brushing) and you are right it’s been great.

They were incredible. We waited 8 months to see them and they’d never seen a dentist so I was really worried - they each had a 30 minute appointment booked and I was dreading it but this woman was a miracle worker and they were both in and out with a clean bill of health in ten minutes! They used a toothbrush to get them to open their mouths and then the dentist basically got on the floor to get a look! Amazing stuff. Even gave us little mirrors to take home to get them used to them. Definitely worth asking for a referral for anyone in the U.K. in a similar boat, although I’m sure provision varies by area.

OP I am not a SALT but I think it is hugely unlikely that your toddler's skills regression is anything to do with your parenting.

You sound so lost, and I think that you do need to find a way to get support from a professional for your DS as soon as you can. This will also help you and your DH because you will have clinically-based strategies to work on which are tailored to your DS' individual needs.

All the best to you

My son did the same thing although slightly younger.

He had caught up on speech by 3 when he had his HV check. He could say the list of words.

Only at 8 was he diagnosed with adhd and now is being assessed for autism too.

None of the regression is your fault. I'd be looking at getting a developmental paediatrician to assess him using the ADOS. If you come out with a diagnosis you'll know where you are. None of what you describe us normal for neurotypical kids but very normal for ASD kids. Try the mchat online. My son was diagnosed at 2 privately in the UK. It took him until 5 for the nhs to get to him.

Thanks again all. We're still looking an options for where we should get DS assessed. One local parent suggested trying to get them assessed in the same place we are getting therapy.

Apart from the sadness I feel for DS, it's also put a potential brake on other plans we have, like more children. Did one ASD child delay or put you off the prospect of more children? I'm worried that the time and financial cost we will devote to DS may do that. I used to joke that I wanted more children but I would find it impossible if they turned out to be another DS, who I think would also not be very gentle with a baby. I am over 40 so I don't want to delay much longer, but I might have to. But I am a little confused about the research linking ASD to older mums.

Also I guess DS would benefit more from a stay-at-home or part time parent? At the moment I am full-time, DH is the SAHD, but he has had a tough time and we were just talking about finding a nursery for DS and getting DH back to work soon. I feel like this might have to go on hold too, and DH would miss out on the opportunity to work abroad for a couple of years. And I feel very guilty sat at work with half my mind on DS and feeling I should be at home with him.

Did one ASD child delay or put you off the prospect of more children?

It didn't stop us having another child, but we did so in the knowledge that any future children had a higher possibility of being autistic as well.

I would love to have another child but we just can’t. Twins with ASD plus other disabilities, still don’t know if there are any genetic issues, chances of having a third child with ASD is about 1 in 3 according to the studies I’ve found. It’s not even about the ASD as such, but everything that goes along with it - the assessments and appointments, therapies, EHCPs, benefits etc etc. I don’t think I can go through all this again, while still dealing with it for two. Maybe if the boys weren’t as severely affected as they are I’d consider it, but for us it’s just not feasible.

It put us off until we knew how badly affected DS would be. After he'd been properly assessed/diagnosed and started school successfully we tried for another. If he'd been more severe then I wouldn't have gone for another. It only gets harder as they get older. I also did IVF (not in the UK) and chose a girl to lower our chances.

At what point do you find out the severity? Best to wait until they start school?

Thank you for responding so quickly. This is tough to read, that it might get harder as DS gets older.

When DS was 2 he went to an autism specific nursery/pre-school. It made a HUGE difference. I'd try to find one near you. All the services be needed we're in one place speech and language/OT/PT/Ed psych etc. Or find any good nursery. It will become apparent very quickly if he's very different from the others. Windows of development close and brain plasticity only lessons as time goes on. I wouldn't be "waiting and seeing". The paediatrician who saw DS said no one outgrows autism they grow into it meaning that without intervention development slows to a crawl and the repetitive behaviours/social inabilities get worse. Early intervention benefits all children. You won't hurt him by getting help. DH was also in the there's nothing wrong camp for years..... turns out he's autistic too!

One of the boys DS started the nursery with and DS seemed roughly the same at 2. Now at 7 the other boy is still non-verbal and not potty trained. His mother has to keep him on reins because he still doesn't reliably follow instructions and it's all very hard. But he's also an absolute gem and a really loving boy. By the time they were 4 it was very apparent that there were big differences. You're in the worst place of not knowing what you're facing.

Windows of development close and brain plasticity only lessons as time goes on. I wouldn't be "waiting and seeing". The paediatrician who saw DS said no one outgrows autism they grow into it meaning that without intervention development slows to a crawl and the repetitive behaviours/social inabilities get worse. Early intervention benefits all children.

Thank you for saying this. I'll say this to anybody who is currently saying "don't worry, he'll be fine".

Can anyone recommend any UK based Facebook groups for support please? Our local one is very good, but I would like another perspective sometimes, especially as we will be facing a return to the UK in a few years.

Re childcare, I don't personally believe that every child with SEN needs a SAHP. It will obviously depend on the child's specific needs and what they can cope with.

Our DS does not have ASD (so far as we know) but has a range of other health and developmental issues including speech delay. He has been in a mainstream nursery but we have now moved him to a smaller setting with better SEN provision.

I personally think that he wouldn't have made the progress he has if he had been at home with either me or DH as we don't have the skills (or patience!) to provide him with the same range of activities. This is completely personal to us though, and others will feel that it is right for one parent to be at home full-time.

So I wouldn't rush to make a decision one way or the other as it may be that your DS would benefit from being in a nursery or pre-school, as long as he has the right support.

This transitional time when you don't have a diagnosis or the right support team in place is very stressful and upsetting. I think you will find that things will settle down once you have that support and you can make decisions about the future.

Thanks, that makes a lot of sense.

DS did go to nursery between 12-18m. Drop offs were quite traumatic for him, and though he seemed to adjust and the nursery workers said he was doing really well and seemed settled, when I picked him up he would burst into tears for months after, which made me worry about the stress he was feeling and keeping bottled up.

Now he's more clingy then ever. He gets a little anxious at some play groups when DH carries him in - we think he may be expecting to be left behind again. And on soft play he'll occasionally run off, but mostly he wants us to play with him. So I'm not convinced he's changed much in the last year to suggest he's ready for nursery. I was pushing for it anyway as I thought he would benefit socially, but now I'm so uncertain.

We have an invitation to an open day next week at an early intervention centre. I really want to go but someone has to stay with DS (children are gently discouraged from coming so parents get the most out of it) so I've told DH to go. I really want him to talk to professionals rather than hear it secondhand from me.

DS's issues did make us delay, tbh. He had some other health issues too which are largely resolved now he's turned 5. But then once we did start trying, it was too late as we discovered I have premature ovarian failure (I'm 41).

At what point do you find out the severity?

You don’t really. No consultant or therapist can tell us whether the boys will learn to talk or understand words, or how severely affected they’ll be. All we know is where they are now, which is severely delayed in a couple of areas, but generally delayed across the board except for gross motor skills. It’s very difficult to know what to expect from the future. We are doing what we can in terms of therapy, getting them specialist school placements (this has been agreed but won’t know til the end of this month where it will be and when, they might not have places until September). Just hoping that early intervention will help.

You don’t really. No consultant or therapist can tell us whether the boys will learn to talk or understand words, or how severely affected they’ll be. All we know is where they are now, which is severely delayed in a couple of areas, but generally delayed across the board except for gross motor skills. It’s very difficult to know what to expect from the future.

Totally agree with this. Our son was diagnosed at three, was still non-verbal and had a statement for starting school at a specialist autism unit attached to a mainstream school, but at the time it was hoped he would be able to integrate into mainstream and he seemed very bright. He did start to talk, although he has limited communication skills, and it was only as he got older it became apparent that he actually has a severe learning disability.
He is now an adult and requires 24 hour support.

It is very hard to tell where things will end up at this age.

My dd had a severe speech delay and poor social responses to other kids. After grommets, hours of hanen OWL activities at home, four years of SALT, she was managing in mainstream.

The speech therapist told me it was impossible to predict whether she would speak but that we had to do all the early intervention we could in the hope that it would help.

Re other dc. We knew dc1 was very difficult at 13m when we started doing ivf for dc2 but just thought it was being a toddler. Dc1 continued to be challenging and still is at 7+. Possibly adhd. But very oppositional too. We had dc2 with a 3yr gap. At 4 dc went to school and really struggled behaviourally.
Dc2 is also very hyperactive only sleeps 9-10h still at 4yo. And the 2 of them together is horrific and honestly i try to keep them apart as screaming shouting etc.
I had thought dc2 would be placid as both me and dp were, however dsis was a bit like this- not sleeping etc but was fine at school.

If i'd known how much dc1 would struggle at school i wouldnt have had dc2 as i now have to go through all this again. In a way similar to asd she has no understanding of authority so was not bothered about seeing the HT. It requires a huge effort to ensure dc1 gets the right amount of sleep otherwise behaviour deteriorates. Little things like end of term etc set it off.
Dc2 is different and so far behaves at preschool (though melts down as soon as we leave), but im not sure this will be ok in yr r.

Have you tried asking him questions where he has to give you an attempt at an answer as opposed to 'yes' or 'no' eg 'would you like a plain biscuit or a chocolate one?' 'Do you want to wear the red jumper or the blue one today?' etc

If you want more dchavd more dc but be aware future dc may have similar or different issues
If dh wants to work you can make it work with specialist nursery and specialist nanny or au pair depending which country you are in you can find chiilcarers who are fine with additional needs.

Get some specialist input
AsD is about joint attention not just eye contact.
Ds lost the few words he had age three...he went onto PECS then augmentative communication ..now uses ipad running gridplayer.

Fortunately now you can run communication apps on ipad. When he points to milk show him two photos one milk one water get him to choose by pointing to the photo.
Use other photos make choice boards.
But you need a speech therapist and nursery familiar with communication with children withASD
It will work out.
Follow his lead what he likes

Have you tried asking him questions where he has to give you an attempt at an answer as opposed to 'yes' or 'no' eg 'would you like a plain biscuit or a chocolate one?' 'Do you want to wear the red jumper or the blue one today?' etc

We have tried but not very hard because we don't get much response back - he's focused on whatever he is focused on, not the question we are asking. With clothes he generally runs away as I he hates getting changed. Last night for dessert I offered him a choice of two fruits which I held on front of him. I knew he really liked one big I couldn't get his attention to even look at it. In the end he might have vaguely pointed in that direction so I took it as yes. But I'm not sure. I will keep persisting.

Thanks all for posting. We have been sent some exercises and we'll make time twice a day for them - DH will do one set and I'll do another.

Some of the tips you suggest are helping. We are reading to him, been animatedly, while he is in his high chair and he is paying a big more attention than usual. He is really interested in First 100 words, but mainly on one or two particular pages, and he says two words from that. He's definitely been able to say more then this before.

Chatting to someone else yesterday about their over year old, and they were recounting what they were doing verbally, repeating lots of words, saying some things spontaneously, I remembered how much DS used to be able to do, how he seemed to be smashing all his milestones until he was 18m. I can't believe how much he had changed in a year.

DH is blaming himself as he was the SAHP during the period when DS started to regress. Though he looked after him wonderfully, talked to him a lot and they did sing and sign classes and tried reading together, he feels he didn't make enough effort at home because DS was a challenging toddler which he put down to being 2ish. They ended up going out more so he could burn off energy and finding activities for him to climb and run around. DS has also always been a terrible sleeper and we thought we had to wear him out to try to get naps and bedtime done. He left us both so exhausted and we didn't devote enough time to activities at home.

I'm going to contact several private therapists today, though I understand even thought they have very good recommendations, I may not be able to speak with the therapists directly before paying for an assessment.

I'm also trying to get through to the Children's Development department at a public hospital that is good for managing regression and ASD. I'm told that the usual route is through a GP referral, then after a hospital assessment you have sessions once a month while you are on a waiting list for a selected child development centres. The cost for us is the same as private.

We were also recommended to try to get the assessment done in the same place we will be having the therapy. Some of these therapists have long waiting times/lists of several months.

And because of DS' lack of focus and hyperactivity, therapy could be challenging.

In light of all this advice, is it best to contact a list of highly recommended therapists and choose whoever can see DS first?