Will my 5 year old ever speak? Looking for positive stories..

[Ayd7815]

Hi all.

My son is just turned 5 and he only has a handful of words he only uses rarely. He babbles a lot and has is own little babbling language and some meaningful babbling eg he will jump and say jumpa jumpa jump.

He’s reluctant to use words and I’m not sure why. He was born a premie and was always speech delayed.

His receptive Language is progressing though. He understands instructions and does up to 2 step ones and he watches and learns quite a bit. Can dress himself etc and knows his colours and shapes and sounds out his phonics and does a lot of puzzles with me.

He has been with NHS speech therapy since 3 and as you know they not to most useful and has been no help at all. But they say he’s a bright boy and does communicate in other ways eg pictures He has ehcp in school and gets help there with speech too. Attends mainstream.

Cuddly happy smily boy who communicates through pointing and handing me things and pulling me etc. Always following me around and watching and coping things I do too.

Has anyone else experienced something similar? When did your child want to talk and start speaking and forming sentences? Desperate here. Wondered if private is best route. Any recommendations in Berkshire area? Thanks

We're in Berkshire and paid for private speech therapy for DS from when he just turned 3 to when he went to school in September, so about 18 months. We got it through The Owl Centre and at £80 a week for an hour it wasn't cheap it was worth every penny. We found NHS speech therapy woefully inadequate, I understand that they are over subscribed and under funded but help was virtually inexistent.

DS is waiting for asd assessment, referred due to lack of speech at 2.5, and started saying single words about 2.5/3 and then 2 words from 3/.3.5. He's nearly 4.5 now and his speech has vastly improved. The private SALT started us with PECS and quite quickly we stopped using them as his speech improved so much.

DS has an EHCP and goes to a mainstream primary with a speech and language resource unit, it serves the whole borough. He loves school and is progressing in many ways.

DS has a long way to go, he's probably about 1 year to 1.5 years behind speech wise and his speech sounds are quite immature. He hasn't been assessed for ASD yet but I'm no where near as convinced he'll meet the threshold for diagnosis.

Every child is different but private speech therapy helped DS, without a doubt, but also helped me. I liked the continuity, the support, the focus which we'd never have got from the nhs.

Your son sounds lovely, I understand that desperate feeling. It sounds quite dramatic but I still struggle with how low and isolated I felt watching DS struggle when everyone else's kids were chatting away. I was so, so worried about him, we haven't had another child as I can't risk my mental health worrying about another child in the same way. It's changed me forever.

Hi @MerlotChiantiMontepulicano thanks for your message it’s really helped me.

Who from the owl centre did you use? Also that school sounds like where my son should be going. Which school is it?

The NHS is not helpful I agree

That’s great your DS is doing so well but my son has been stuck on single words since 3 and he’s now 5 and it’s so scary why it isn’t progressing. His understanding has a lot however.

No speech therapist has mentioned ASD to us they don’t think he has it I think. I’m not interested in the diagnosis just what can help him speak.

I know that feeling of looking at other kids. I feel your pain 1000 percent. It’s also changed me forever.

I'll PM you as to say where he goes will be too outing.

I have a 5 year old who is now speaking with echolalia and a 7 year old that is just beginning to use words. They are both autistic and very different when it comes to communication. My 7 year old uses PECS and with words he is confidents with he will now verbalise them but had not done so before age 5/6 it is still very limited but it shows me he has the capability and we will get there. It is so hard watching other kids chat away but our kids just need much more time. I think if a child initiates some words they are very likely to be able to speak in time. Have you read 'The Reason Why I Jump; amazing book written by a non verbal boy.

Have you been referred to a paediatrician op? My DC was similar and we were referred to one as well as having SALT...all through the NHS. Has your DC had a hearing test?

It sounds like your child is very bright and is finding his own ways of communication, but it also sounds like he could do with more intensive SLT.

Our second son was referred to SLT at the age of 3 as he had virtually no language or understanding. He was diagnosed with a "severe and complex language disorder" at the age of 4 for both expressive and receptive language.

DS2 could barely string a sentence together and a lot of what he said was complete gobbledygook with the occasional recognisable word. I remember once hearing a much younger child say to his mum, "What are they doing?" and it struck me then that DS2 had never asked a question in his life.

We struggled to understand what he was trying to tell us. Frequently he cried himself to sleep because he couldn't get through to us. And we struggled trying to get him to understand us. He would just say "Yes," to everything, even when I said something like, "Don't do that again."

The despair I felt at not being able to get through to him was indescribable. It was as though there was an invisible brick wall between us and I just felt completely useless.

DS2'S receptive language was so poor he didn't get excited about Christmas because he had no understanding of what Christmas was, so on Christmas Eve he just went to sleep as normal. How do you explain about Father Christmas and presents to a 4 year old child without any understanding?

We also had a lot of behaviour problems as a result of his frustrations at not being able to communicate. Some of his behaviour was so bizarre, we were convinced he was autistic. At that point I couldn't see how he could ever go to a mainstream school.

The key to everything was the intensive support and intervention that was put in early. He had a Statement of Special Educational Needs (now an EHCP) while he was still at nursery school, which provided for at least 15 hours 1:1 support and this was transferred to (mainstream) primary school.

He had intensive speech and language therapy with a specialist therapist from the Specific Language Impairment Team for several months. The Speech and Language Therapist went into school to work with him directly, and gave the TA tasks to carry out each week. DS2 loved learning and responded well to all the support he was given.

By the time he was 6, DS2's language (both receptive and spoken) was age appropriate, he was doing better than most of the other children in his class, and his Statement ended.

The following Christmas when he was 7, the little boy who had once been so isolated and unable to communicate, was given the part of Joseph in the infant Nativity play, a major speaking part. It was a measure of how far he had come.

DS2 is now 27 and a graduate from Manchester University. He’s in between jobs at the moment, as a result of Covid, but he has worked for the NHS and up until recently was working for EMR.

Hi @Ellie56 thanks so much for your story. What a amazing positive story

I understand your frustration as my son doesn’t really fully understand Xmas and more complex abstract concepts but does follow instructions and does enjoy watching cartoons which he does understand and pick things up from

What kind of therapy did you get? Is it like ABA therapy or just intensive speech therapy? Who did you use and are you in the Berkshire area? I know it’s a long time ago? Was it through the NHS?

How intensive was the therapy? Thanks again

It was just intensive specialist speech and language therapy, all on the NHS, but over 20 years ago. We're in the East Midlands, so nowhere near Berkshire.

If I remember rightly the SLT was going into school on a weekly basis, then showing the TA what to do and then she carried out the tasks on a daily basis with him. He was quick to pick things up though.

Sadly, I know that NHS SLT provision has been cut right back . If we were facing this problem now, I think I'd be trying to scrape the funds together to get private therapy.

DD2 had virtually no intelligible speech when she started school - but good receptive language (when it suited her - it all went in but boy oh boy is she a master at selectively tuning me out!) but minimal intelligible speech. Loads of her babble which was obviously really interesting and important but none of us could get in on it!

NHS SALT... don't get me started. Private SALT we saw fortnightly for a year and did lots of consolidation work at home and school - and now she's an utter chatterbox - some of it slips at times, consonants tend to drop out when she's tired and her intonation and control of volume aren't quite 100% - but she's totally intelligible and made up for all those years she couldn't grass up her sibling for doing anything and everything wrong - and a totally different kid.

She has motor dyspraxia and also verbal dyspraxia - plus some other issues with some elements of language and some minor phonological quirks we had to work on.

Have you tried AAC on iPad etc? Not as a substitute for what you are doing already - but could be another thing to add in. There is a good YouTube channel called Nurturing Neurodiversity. Her son is doing amazing communication on an iPad, and his verbal speech is now starting (he obviously really struggles to just form the sounds, but he's really trying and it seems like he is quite motivated to do it - but obviously being able to communicate with the iPad makes him much happier/less frustrated in the meantime!).

This is a recent video she's done about her son's speech development: she talks about the role she thinks AAC has played at the end (from 11.30).

This one talks about AAC a bit earlier (a minute in):

Here is a recent video on speech disorders she put together that may be useful:

There is also a little bit from a girl called Lilly using AAC about 6 minutes into this video (she has apraxia):

@Ellie56 thanks for the info. Yes NHS has been cut right down. It’s not even helpful anymore. There’s no way they go on a weekly basis now
I will be looking into private therapy

@DominaShantotto thanks so much for posting your story. Your little one sounds similar to mine. I can only dream of the day my son is like a different kid. His receptive language isn’t too bad. But has trouble with abstract understanding I think. How was your little one like with abstract understanding like Xmas and birthdays and more complex directions?

@LightTripper thanks for this I will have a look!

you could try using 'makaton' signs alongside speech to aid his communication , as you talk you sign as well
there are makaton signs on you tube . singing hands are very good as well

@Ayd7815 mine is OK understanding concepts like Christmas where there's a distinct advantage in it for her (at the age of your child she gave the impression of being completely not with it until you realised that she suddenly became very astute when there was something in it for her - she's a wily little one!) but following multi step instructions and sequencing she's still dire with now - we have regular conversations about how the pants go on BEFORE the tights and if you ask her to go get something you'll find her stood in the middle of the room gazing at the telly with one shoe on or something! That's just her general dyspraxia though (and a bone idle streak as well!)

Birthdays - again - stuff's in it for her - she's now the little bugger who opened my google calendar on my PC and made a point of checking I'd entered her birthday in it! (I've got a post it note shoved in my paper diary on her birthday telling her to stop being a nosey git - cos I know she'll be in there looking to check and write it in)

NHS SALT in our area at least is now on a blocks of 6 sessions and then back to waiting for around 3 months model (although the wait lists are down apparently because of the move to telehealth). I got that interested in it all after what we went through with DD that I went back to uni and I'm now a SALT student myself.

Sequencing is something a good SALT can help with. We also were disappointed with our NHS SALT (DD is actually verbal but never asked for anything - they call it "manding" - so they just wanted us to she constantly hide things from her or make them inaccessible so she would have to ask - but it felt quite fakey - like we weren't meant to open something for her if she just handed it to us, only if she used words - that seemed quite fake to me as she was communicating in her own way).

She had a good private SALT in Nursery/Reception who did things like turn taking games and lots of sequencing stories, and it seemed to really help (in the sense that she started off quite behind but ended up age-appropriate when the SALT finished). She really enjoyed it (unlike us hiding things from her and making them inaccessible!) Obviously I don't know how she would have developed without the SALT, but it did seem to help develop those skills.

Hello
how is your son doing now am in exact same position please?