Non verbal son - feeling down

[doadeer]

My son is 20 months and has no language.

I've chatted, sang, everything with him since he was a day old. I've tried my best so much but it's getting me down and I'm feeling like a failure. He doesn't respond very well to commands, won't point at anything. He often opens his mouth and shakes - but doesn't try to form words. He babbles a lot and goes hmmmm constantly. We read a lot, about 20 books a day. He doesn't enjoy most toys he just likes to move small items and collect them.

I spoke to HV and she was rubbish, we've been referred for hearing test which is in a few weeks but I really don't think it's that.

We are going to see a private paediatric consultant to get advice as he does have a few autism markers but I'm not sure.

Please can someone help, what should I be doing to help him? Having a real crisis of confidence.

May be worth checking his hearing. He sounds such a lovely boy! I'd play to his strengths at this developmental stage, whatever he is interested in, and talk to the GP about your concerns.

My son didn't speak until he was three, and then it was full sentences.

He had a tongue tie, which may have held him back. It was investigated at a few months old, but the paediatrician didn't want to cut it as he was feeding well.

We literally had our first appointment with a private SLT yesterday for dd. She’s just turned 3 and only has single words.

I just snapped one day two weeks ago after waiting and waiting on the NHS. I know we’ll still need to go through the “official” process for a diagnosis, but right now she needs practical help, not a label.

I wouldn’t say he was too young to speak to a SLT. They’ll start with working with you on his play and concentration skills anyway, which I’ve found really valuable.

One thing I’d say is that the possibility of any diagnosis is so bloody scary. It’s been on my own mind for a year now. But honestly, it’s not the end of the world. If he needs extra support, so what? He’ll still learn, progress and achieve. And you’re obviously fairly tuned in to see that he might need extra help and willing to facilitate it.

One thing I’ve seen repeatedly from other mother’s who’s dc had “untypical” development is that they wish they hadn’t worried so much.

I have a 23m old who only said daddy and cat by 20m. She has fantastic understanding and can communicate in other ways but no words and I was worried sick. HV was rubbish so we have pretty much bankrupted ourselves to pay for private speech therapy (now cancelled again due to lockdown 🙈) and I cant recommend it enough, its made a huge difference. Shes only had 4 sessions (with gaps for us isolating then the SLT isolating) and she now has 9 proper words and another 12 or so that arent very clear but we know what she means. I feel confident now that she will be caught up within a few months - maybe she would have anyway but maybe she wouldn't so money well spent far as I'm concerned and all the sacrifices were worth it

Definitely have a look at asltip.com/ to find an independent speech and language therapist - that way you'll know they are qualified, registered and DBS checked.

I used a private speech therapist for my twins who didn’t have any words at 2.5.

After the first session they had two makaton signs they could use and communication had opened. Now they’re 3 they speak all the time, can say sentences and can sing whole songs.

I think under 2 is quite young. I mean it's never wrong to gather resources, especially if you are worried about comprehension. But definitely don't panic yet.

@doadeer

Yes we can afford that. I don't suppose you are London based?

I desperately want to be able to help him but I'm not sure how.

What did your speech therapist do?

Yes sw London. We go to Therapy4kids (don't let the name put you off!)

@IcandothisactuallyIcan

I think he's very young for speech therapy. I had a therapist for my DS started at 2 years 8 months and it was a struggle to find someone who would work with him, it did help a lot though.

The main thing I learnt from my dealings with the NHS and the council run workshops was to simplify. I would happily read the Gruffalo to DS at your DS' age and he would sit and look and appear to be listening, but it's all just noise, he couldn't connect any of that to what was going on.

DS needed to understand through repetition. A baby book with a few pages is better, just a duck for example on the page. Say duck, maybe you quack and point and say duck again. Next page shoe. When you put your shoes on you say shoe. Mummy's shoe. Ohhh green shoe pointing at your DS' shoe. Single words, label it. Add another word. Dog, brown dog, small dog, dog woof. Repeat.

2 isn't too young. My son started at 2

@MumbleJunction

I think under 2 is quite young. I mean it's never wrong to gather resources, especially if you are worried about comprehension. But definitely don't panic yet.

This

@Choconuttolata

Baby Makaton with you providing the words also helped early out for drink, eat etc..

This was going to be my suggestion too!

Oh I know this feeling all too well!

HV may have referred to audiology to rule out hearing problems as this is one of the first things they check when referring to speech therapy. My son is back on the waiting list for SLT face to face, video calls aren't much use for him currently but it's not happening. Have been wondering about private too.

Other suggestion is what others have said - makaton - I've been teaching it in school, learning with children really and it's really accessible. You can sign up for courses. The Singing Hands videos are absolutely fantastic.

His language IS delayed. I know people are trying to be kind but it’s far more likely given OPs description (limited play, no language, no interest in age appropriate TV, etc) that the child isn’t neurotypical (this doesn’t mean he won’t thrive there are many examples of neurodivergent people who are exceptional).

I’d look at early Montessori schooling/apparatus. Non verbal children need lots of things to engage with. Ask for referral to a paediatrician through your GP for assessment. Self refer for s peach and language assessment and hearing/eye tests. I personally wouldn’t “go private” and would spend my ££s on enriching his environment.

If he likes collecting small items, have you looked at toys like Grapat Nins, Coins and Rings? Or any of the Mandala pieces?

If you Google "Theory of Loose Parts Simon Nicholson" you might find ideas for how to play with him in a way that he responds to.

@MumbleJunction

If he likes collecting small items, have you looked at toys like Grapat Nins, Coins and Rings? Or any of the Mandala pieces?

If you Google "Theory of Loose Parts Simon Nicholson" you might find ideas for how to play with him in a way that he responds to.

Thank you ill have a look at those!

@5zeds

His language IS delayed. I know people are trying to be kind but it’s far more likely given OPs description (limited play, no language, no interest in age appropriate TV, etc) that the child isn’t neurotypical (this doesn’t mean he won’t thrive there are many examples of neurodivergent people who are exceptional).

I’d look at early Montessori schooling/apparatus. Non verbal children need lots of things to engage with. Ask for referral to a paediatrician through your GP for assessment. Self refer for s peach and language assessment and hearing/eye tests. I personally wouldn’t “go private” and would spend my ££s on enriching his environment.

We have insurance so it's not spending lots. I wouldnt say it's limited play, it's just a very specific form of play. He will play for an hour with his magnetic sand or playdough.

I wanted to see a paediatrician to rule out anything physical and to get guidance on next step.

We're at about the same point, 23 months old, no words at all. His understanding is good, he follows instructions, will go and find the book you ask him to find (also obsessed with books).

The hearing test is important as it's the first thing that SALT will ask, has he had his hearing tested.

Does your son go to nursery at all? We've been very fortunate, our HV is good, and nursery's observations have backed up everything we've said. We've had the hearing test and are waiting for SENCo to see him at nursery. I'm certain that we're coming out of this with a diagnosis of autism (we have many other behaviours in addition to the not talking)

Have a look at this OP.

Both the NHS and private SLTs that we’ve seen have pressed the importance of this diagram as a means to explain that useful speech is actually the last step in developing communication skills.

My own DD needs to learn how to play with people and develop shared interest before we can start tackling the top of the pyramid. The foundation needs to be there first.

My own experience is I had a 2 year old with no speech, so I feel I can say it is still young and not to panic. I am in the SE and I contacted many SALT and most wouldn't work with under school age. My DS displayed some repetitive behaviours, but I would say he is NT, no hearing loss. I did worry A LOT. It might be he is ASD but it's certainly not obvious now. He is shy and lacks confidence but part of that is immature speech.

You are doing the right thing trying to help. My DS is 4 and his speech is ok now, still delevoping. It wasn't magic, nothing happened instantly, it was purely a lot of repetition of single words, labelling things and building on that. He saw a speech therapist once a week from 2 year 8 months to just under 3.5 years and yes it was play based to make him speak. The main work is the people with him all day every day YOU or nursery.

We have insurance so it's not spending lots. I wouldnt say it's limited play, it's just a very specific form of play. He will play for an hour with his magnetic sand or playdough. very specific play IS limited it’s limited in that it lack breadth rather than he lacks the ability to play for a length of time. I’d stick to nhs because we went “private” for some things and in hindsight it didn’t really add much. If it feels like it’s better it may be of value for that reason. It’s very worrying for you but try to give him lots of other skills that don’t need language as it can be a very focused deficit and doesn’t have to hold him back in other areas.

Just a different experience but Both the NHS and private SLTs that we’ve seen have pressed the importance of this diagram as a means to explain that useful speech is actually the last step in developing communication skills. my ds is a teen now but he very definitely didn’t follow the progression in that pyramid.

My son was 22 months when I spoke to our health visitor, saying that I was concerned about his lack of speech. He was referred to SALT. He had a serve speech and language problem. He ended up going to a language unit placement for just under three years, most of his infant years. He's nearly 9 now and is still having speech and language although he is now in mainstream school. His speech has come on leaps and bounds. He's been seen by the educational psychologicalist and peadtrician as he was in the "system" following his speech referral. Early intervention is very important. I would go back to your health visitor and ask for a SALT referral as well as go and see someone privately. You may also qualify for DLA. We did for a few years, which would help pay for private speech therapy sessions if you wanted.

I have a 4 year old, now very verbal, (diagnosed with asd, or what would previously have been called aspergers) who sounds similar to your dc at that age. I understand how worrying it is not knowing if your child will talk.

I tend to agree with 5zeds- platitudes are kind, but not always helpful. You sound as though you have done your research so you probably know that lack of pointing can be significant.

If you have health insurance, great, but I think it is unlikely that a paediatrician will take you very seriously at this age. However it doesn’t hurt to get the ball rolling. Have you had a look at the m-chat test?

I have said some of this on previous threads.

The best thing we did was a private SALT, who seemed to understand our concerns, and our child, much better than the nhs salt who had a lot less time to see dc. It wasn’t cheap- about £80/hr/fortnight.

The focus was on communication, not speech. She helped us to communicate with him and build his joint attention. Not once did she try to get him to say any words.

We actually did pecs for a short while which, luckily for us, seemed to really help ds1 understand the purpose of communication and led to speech shortly after. This obviously will not be the case for everyone.

You may know all this already, but we were also told:

• never to ask him to speak or repeat things and avoid asking questions.
• give descriptions and leave pauses in case he fills them. Eg “this is a.... car”. Praise if there is anything at all in the gap.
• narrate everything he is doing and use only single words where possible. Eg, he picks up a toy lion, then puts on table, we say “lion. Roar. Table”.
• read stories, particulary rhymes, and leave a pause before the last word of a line and see if he fills them.

-lots of “ready, steady...”(wait for eye contact) “..GO!” -repeat a few exclamation words with emphasis. We said a big “Uh-Oh!” with gestures every time anything dropped. It was his first word.

Hope that’s not patronising. Good luck!

That pyramid,above is not appropriate fif child with ASD . They do not follow the steps.
It s a huge barrier to communication if an inexperienced SALT waits for chlld to do xx or yyy.
Get onto PECS signs symbols early on.
Assume your child will learn to read and type and find someonehappy to explore developing communication in all forms not just verbal speech.

Op your chikd communicates that he likes films not cbeebies. Build on that. Give him thd tools. Photo choice boards. Downlisd grdplayer app.
Signs.

There is more than one way to express yourself.

And as wwwomble said

The focus was on communication, not speech. She helped us to communicate with him and build his joint attention