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.

Hearing test was life changing for my child. We pushed for grommets and 2 weeks late he started to speak

That's amazing I'm so glad he's doing well @Onceuponatimethen !!

We have an appointment next weds for a hearing test so hopefully all goes well!

Brilliant!!

Good to hear more positive stories! I'll make an ENT and pediatrician my next ports of call.

We visited 4 therapists today. By the end I was less emotional and almost tired of our own story. We have the more visits scheduled tomorrow.

Unfortunately I think DS might have croup - he has a hoarse, barky cough. If it's caused by the cold virus and he's well with no fever during the day, can he can come out with us? I'd still like to see tomorrow's therapists with DH. We thought we could keep DS outside the clinic with one of us and see how they feel about letting him in. Or are we being incredibly selfish? We could reschedule but it means me taking more time off work and pushing back the start of any therapy for another week or two. We're really keen to make a decision soon.

I would have taken mine if fine in themselves

He was fine, just a bit sniffly 😊

We have settled on both an OT and ST. They are both in the same centre which has very good recommendations. The meeting with the ST was impromptu so we didn't chat with her as extensively but they were both wonderfully engaged with DS. They tick all of our boxes and the centre has a really great gym that both the OT and ST can use. All the therapists we've seen are miles from where we live but at least this one is placed centrally with public transport links. And they are available, unlike most of the highest recommended therapists I've asked about.

Generally speaking I was surprised that some of the other therapists didn't try to engage with DS. I thought at least from a business perspective they would make an effort to get some rapport. But a number of them, including the well recommended centres, barely spoke to him. I guess they expect that if parents have made it this far to their offices that they are ready to sign up.

Anyway I was starting to think that everyone's approaches were so similar that it probably wouldn't matter who we chose as we wouldn't know how well it's working until the therapy actually started. But I'm glad we found some people we actually liked.

I'm a little late to comment on the subject of OT Option 5, but I would actually be heartened by her approach over the phone. She really can't even make general remarks and needs to see DS first before explaining exactly what she would do and why.

Yes indeed, very late, sorry..

Op I think that sounds amazing! The SALT I hired for dd gave me incredibly useful guidance on the phone (general hanen advice to tide me over between the chat and her assessing dd) and just “got” dd and clicked with her right from the start

I am so pleased you’ve found a team you trust

@mathanxiety

No worries, we saw 5) in person actually, and I think they were relatively subdued and didn't interact with DS. I'm sure they would have been more engaged in an actual session, but we have no way of knowing what they would be like. I was also put off by the lack of detail in the OT's answers - every vague statement was prefaced by "I can't say without an assessment" which we both found a bit annoying.

I take your point about not rushing to judgement before any assessment has been made. Most therapists have been careful not do so and said something along the lines of "from what you've said or what I can see, there may be some sensory issues. Generally we might address them using sensory integration therapy and DIR floortime. For example we could do this, and this is what we hope to gain from it."

@Onceuponatimethen thanks! The therapists we chose really engaged with DS, and he was really responding, making eye contact and climbing all over them. I feel really happy with our choices.

We've also have very mixed opinions on whether a hearing test or psychologist assessment is appropriate at this stage. Some say to go for it now, others say that if he won't sit still for a hearing test then we won't get anything out of it (and it'll cost another £1-200 done privately.)

What does a hearing test involve exactly?

A good paed audiologist will have reward audiology equipment - if you look this up you will. see that a little exciting animal or item will pop up when a noise sounds! They look towards the toy or little bus that has lit up or popped up. Initially they pop up with loud sounds - the child then learns what to look for when the sound goes. Then they analyse the sound thresholds at which the child is looking for the little bus or cow or whatever!

My very similar toddler engaged really well with the test so please do speak to a paed audiologist directly to discuss with them. You need one who has a reward audiology set of equipment

I agree with the eye test and hearing but also please push on the communication/autism front as if he is on the spectrum, the early the interventions, the better, while the brain is at it's most elastic.

I wondered if you had seen the episode with Jo Frost where she gets a little boy to talk:

And there is a very informative and uplifting YouTube channel called "Fathering Autism" who share family life with their non verbal daughter.

I think as pp said it isn’t either/or. Pushing ahead simultaneously on all fronts including hearing is best!

This link might help:

m.youtube.com/watch?v=y78XWQktpEI

My dd never sat that still but managed the test anyway!

Thank you for the link! I will look into hearing tests.

In terms of psychologists, I've been informed that a consultation/assessment/diagnosis can cost over £1000! 😢 Therapists' opinions on psychologists have swung between them being necessary to it's not very helpful and it just puts a label on them, it's mainly useful to get a report for school, and the outcome is usually "send them to therapy".

DS seems to be doing relatively well the last few days, being more interactive than usual and the therapists, while saying he would benefit from therapy, also say that there are a lot of positives they can see, that he is noticing things around him curious and trying to interact, and just lacking the language skills to communicate what he wants, that if he is on the spectrum that it is not the most severe case they have seen, that there was something to work from. It makes me feel more positive.

When I talked to yet another OT today (, not the ones we picked, I count 12 therapists so far) over the phone and she is a great believer in home therapy over gym therapy because it would teach us things that we can repeat in the home and keep the exercises up consistently. And they all say that the difference we'll see will friends on what we do at home, not what we do in the gym.

I'm a bit torn about this. DS is so chaotic at home, he really just wants to run to bed and play with the sheets or bounce off the walls, or throw toys, so I find it difficult to see how he would be any different with a therapist here. But I won't know unless we try.

Whereas DS would enjoy the novelty of a gym and I think he would get a lot out of the equipment there whilst working on self-regulation and communication skills. The gym OT therapist we picked said she would give us some pointers on what we can do at home to work on the same things. But I'm a little in two minds about this.

Would love to know others experiences, especially if you've done both. What is the best way to decide?

Hi all, I wanted to give an update and ask for some more advice. I posted on SN children but I think traffic is a little slower.

We found an OT and ST in the same centre that we like. We are on the waiting list for an Early Intervention Programme. Likely we won't get on it until July but the ST thinks it's too early for DS and he won't get much out of it at the moment. They don't do formal assessments because he is so young. But we did receive a written assessment from a different ST who noted that DS language issues are severe.

We started OT and ST two weeks ago - we totally buy into why both are necessary and found therapists we are very comfortable with and know how to engage with our son.

After our second OT session we weren't too sure. Her gym is well equipped to make lots of variations of obstacle courses, and she was trying to get our son to work through them and complete multiple rounds, going at his pace, letting him lead but also trying to push him a bit to do new things. His attention span is everywhere so he kept getting distracted and running off to do something else.

Both my husband and I were suddenly not sure - it felt quite similar to the playgroups we take him to anyway or playing around at home, but ten times more expensive!

We spoke to the OT again to get a better sense of what the objectives are and she said that it was about getting DS to try new things and experience different kinds of movement. The gym is superbly equipped with slides, hammocks, swing, trampoline, blocks to scramble on, balance beam, bumpy mats, toys, tubes to roll in. And actually DS can do all this stuff. We are trying to build up the number of rounds he can complete in an obstacle course (his choices).

The OT does gently push him more to try things or keep at things because he had such a low attention span he can lose interest before he even starts. And she is getting to get him to initiate jumping forwards. We asked what we need to do at home to help and she said again to get him to try new things, but we don't have to replicate what we are doing at therapy - once a week is enough.

We are also using the Wilbarger brushing protocol, so both she and the ST have said we also have to wait for the effects to kick in.

I just wanted to ask here if this is the typical experience of OT. I'm tempted to try a different home OT, alongside our current sessions. But we're only two weeks in - want to give the current OT a fair shot.

I haven’t done OT but would say you do need to give any kind of therapy a good few weeks (I would say at least 6) to be able to judge effectiveness.

I’m glad you like the OT and ST and really glad you have all this in place and that the ST has started. My dd was stated to have a severe language delay but did then acquire language so it really is possible. How are you finding following up on the ST at home?

I definitely agree with getting your son assessed for ASD.
My son was exactly the same. I’ve been frantically waving my red flag since 13 mths ( no babbling at all) severe speech delay. He would have a word and then drop it. No interest in focusing on puzzles, flash cards, and has little interest in things most children enjoy ie tractors, police cars, building blocks. SALT was a huge let down after a fairly long wait. Once in nursery, they quickly got on board and have now applied for an ASC assessment ( autism assessment) The waiting list is sooner pre 5. Much longer post 5. You could go privately in the mean time but it’s costly about 2-3k
Visit Gp and note your concerns. Gp can refer you to paediatrics who can organise physio etc. My son is able to sit comfortably in the ‘W’ position as children with autism tend to have a bit more flexibility that neurotypical children. He also has a weaker core. It’s not a diagnosis yet but it all points in a similar direction.
Children do all develop at a different rate but I’d get on the ASD waiting list if you can. If your ds catches up, you can always come off the list.

At this age, the most important thing is non verbal communication. So things like, does he show you things that he's interested in? Does he use his index finger to point to the things he wants? Play is also very important. My dd, who is autistic couldn't play appropriately at all. She used to spin around the outside of a room.

Can he imitate? When it comes to autism it's about a whole bigger picture. If he is autistic, the sooner he gets a diagnosis the better for him as you can then apply for EHCP for him well before he goes to school.

The therapists and pediatrician we spoke to said there wasn't much point in getting an autism diagnosis because it puts a label on the child but the recommendation for therapy is still the same. The pediatrician said the signs of autism were very obvious though. Feeling a bit confused about it all now. We are also based abroad but are likely to come back to the UK in the next couple years for school. It will cost a one to two thousand pounds as you say (no voice to bo go private here). At 2.5yo is there any benefit to doing it now or can we wait until we go back.

The therapists and pediatrician we spoke to said there wasn't much point in getting an autism diagnosis because it puts a label on the child but the recommendation for therapy is still the same.

All children with autism have different profiles so a properly conducted diagnosis report will help you (and him) understand who he is and will also help you prove he needs support to be properly quantified when he goes to school particularly.

How are you finding following up on the ST at home?

ST is super - really engages with DS, gives lots of tips throughout the session on how we can follow through at home and using games we already play, follows up on the day after in case we have questions and to trouble shoot exercises that aren't working. Progress is slow though. I knew DS was having issues but the repetitive exercises make it painfully obvious.

One other thing is I don't feel DS shows his best self in the therapy sessions. He does say a few words, he does make eye contact occasionally - he does it a lot less with both therapists (but this is better than the ones we didn't go for whom he ignored completely) - such that when he does something "new" like say a word or look them in the eye or points at something, they get super excited. And DH and I are not feeling that excitement because he's only doing what he does quite often at home, just that the range of what he can do is quite limited.

@Moomin8 thanks, I will think it over. It's just hard to be motivated when literally all the professionals and local parents I've spoken to are saying don't bother, don't waste your money at this stage 😟.