Positive stores with speech delay - really stressed

[chasingpirates]

Not sure what I’m looking for other than reassurance and to hear some positive stories.

I know all children are different but it would make me feel better as I’m losing sleep and constantly thinking about my DS3 development.

We are expecting he’s autistic. We have an assessment coming up in a few weeks.

He is a gestalt language processor (talks in chunks of language/phrase).

He hashundreds of words and some long phases (up to five or six words) and he uses pretty much all of them in the right context.

He sometimes responds to his name, his eye contact is on his terms, he really struggles to follow instructions. It’s like we’re not saying them. If we say “get shoes on” he might do it but if he wants to go in the garden he’ll rush to get them. If we say “bath time” he’ll run upstairs or “dinner time” he’ll be there straight away so he must have some understanding.

He has zero conversation. He might say something related but never answers. The closest is saying “no” to bedtime.

He has rarely pointed or waved. He has started to line things up and ocassionally spins or flaps his hands but sometimes that’s less than once a day so not obsessive at all.

He’s happy in loud busy places and plays alongside other children but doesn’t really seek out play and if he does it’s more rough and tumble sort of play.

He can count to 10 but I think he’s just remembered the sequence. I think he’s just about starting to recognise colours but it’s very unreliable and possibly coincidence when he’s pointed to one and got it right. He doesn’t sit still enough to concentrate on any of this.

He’s having private SLT which is helping a bit. He’s had a hearing test, that was all fine.

I’m just so worried about his future. Will he ever talk? Will he ever be independent? Will he ever be potty trained (showing no signs yet).

I’m sorry, I know nobody can answer these questions. I think I’ve lost it tonight.

If anyone has any positive stories I’d be so grateful.

Thanks and sorry for the lengthy post!

Sorry - I should have added that bit! Yes, he had a diagnosis at 3 and had an EHCP in place from 4 so was able to attend a specialist provision from
Reception.

He started in a base in a mainstream school and is now in a wholly specialist school for children with communication difficulties. We’ve seen improvement in 2 months.

They do lots of singing which seems to help.

Singing does help and also if you switch the intonation of your speech around it helps too. I will ask my DS if he’s had a good day in an upbeat voice or bad day in a low ‘sad’ voice so he recognises the tonality and can answer accordingly. Also not asking questions at first helps, modelling the sentences instead when they’re in the early stages of GLP e.g I went to school today and I had fun in an upbeat voice! Or whatever.

Now I demand a full sentence before I give him anything e.g if he wants me to open a drink carton or packet I will demand he asks with a full sentence and he does! They get there eventually, it’s very rare for children to stay mute.

As someone with a grandson that is 6 later this year, and whose voice I’ve never heard, this story warmed my heart. Thanks for sharing @NoisyHiker

@ Satre
'Now I demand a full sentence before I give him anything e.g if he wants me to open a drink carton or packet I will demand he asks with a full sentence and he does! They get there eventually, it’s very rare for children to stay mute.'

It is interesting that this works for you. It wasn't the advice we were given for our DS who had severe language disorder/autism. We were told to pause and say less, to allow processing time for a response. It was very hard not to jump in, as it feels natural to want to prompt. We were also advised to give to options, rather than leaving questions open. Ds didn't form full sentences until he was 8/9, so he'd have been very hungry. 😊

@chasingpirates yes - I always thought DS understanding was ok - although he responded better to short sentences and single instructions
He really struggled with understanding directions like next to, below, on top etc but was fine with left and right - he was also obsessed with numbers and sorting things into order or sets

@chasingpirates From about five and a half. It seemed to go hand in hand with learning to read.

My son does say very much at four but he loves singing and dancing to nursery rhymes.

My son loved singing and rhymes very much and still loves rhythm in speech. The desire to speak was always there, but there were pathological speech and language difficulties that needed to be unpicked. His speech therapist was brilliant, she almost had to re teach his language skills from scratch, almost like building blocks from single words upwards.

I think that it important not to look at speech from what children can say expressively. My son could parrot vast scripts from TV and could use learned phrases appropriately, to ask for things that he wanted. He had no understanding of the entire sentence at all. We worked on adding onto single word requests, to combining words and then onto to short sentences over time.

Just remembered we were encouraged to sing songs, particularly in the car.
We had a DVD of rhymes and songs to encourage sounds and the phonics.

Should say "not".

My second daughter was diagnosed autistic on the NHS when she just turned 4.
At 3, she didn’t have any words, she just knew her numbers and letters and that was it. Shes also a gestalt language processor. She had just a few single words and chunk of words when she turned 4 because she could understand some things but just couldn’t say it so we tried a gradual approach to potty training and she was fully trained before she turned 3.
She’s 7 now and at stage 5 of gestalt language processing. We say she learnt to speak more from reading. She only just turned 7 but her reading age is 7 years 9 months at her last parent evening.
At 3 she just flaps her hands a few times a week but at 5 it became more pronounced. She still flaps her hands several times daily now as that’s her stim but it’s like she’s getting more conscious now so it’s reducing. She goes to a mainstream school but has an ehcp for a 1 to 1. She’s thriving in all her subjects. She sometimes gets frustrated and you need to take your time when explaining things to her but her understanding is great now. At 3, I didn’t believe she’ll ever say a sentence, at 7, I’m just grateful everyday with all the improvements we see.

My brother was referred when he was 3 and only had two words. This was back in the 90’s. He wouldn’t make noises like car engines or sirens. He’d communicate with pointing. He could fully understand, just wouldn’t speak. He started to use more words by 3.5yrs and by school had caught up with his peers. Personally, I do think he has some degree of autism, but back then, my parents refused to get him assessed and apparently it wasn’t ‘a thing’ 🙄

He’s 40 now, doesn’t stop talking. Ever.

DS regressed at 2 and diagnosed with autism. Sounds similar. singing & speech use different areas of brain. DS memorises large chunks info without understanding so could sing whole songs but had little functional language. Any pattern which is the same he can memorise - a song the words are always in the same order so don’t require any processing of the language which is what he struggles with.
The main thing that stands out for me is lack social interest and back and forth communication, you don’t need language to communicate a baby can respond and interact while bouncing on your knee while you sing or do actions - there is a 2 way social back and forth. With autism that can be lacking. MChat is a screening tool but if you have private SLT I would expect them to be able advise.
DS has developed some phrase speech. He can mainly make his needs known. He’s always made progress but slowly and would be considered learning disabled as well as autistic. He has gained lots of life skills and can read and write but won’t do gcse. His language problems are the main barrier to his learning. I consider him to have a language disorder not just a delay. But he continues to learn and probably will throughout life.
Many children do remain non verbal but I do think some (not all) of that is late and poor intervention in UK.
Sometimes it’s about the motivation to use language or understanding what language is for so it’s important to have therapists who know how to build motivation not just work on production of speech. Hanen More than Words is a good book.
There are DLA and autism guides online.
the only difference between middle and high care is if they need help overnight there is no difference in level of need.
i felt like you at age 3 but even though DS won’t ever do formal exams or probably get someone to employ him and little understanding of anything he hasn’t directly experienced he is very happy, lives in the moment and enjoys life and has learned to do a lot of things independently. It’s a simple but enjoyable life as long as he has good support around him.

I think looking back over all the comments (which are so helpful) I’ve realised it seems that most people’s children had a good understanding but just couldn’t talk. My DS doesn’t seem to have that 😞 he must have some as he’s putting his phrases into contact almost all of the time but following instructions or identifying colours/numbers of things doesn’t really exists.

23 years ago our excellent speech therapist talked about the building blocks of speech and why the animals on the farm, all the sounds they made was ground zero for building speech and not actual words.
We started at this place.
Our son has verbal dsypraxia which made speech harder.

OP, try not to work yourself up.
I did and it doesn't help you.
Read up, do all the animals on the farms.
Doing exercises daily really help.
Sometimes it is plain laziness that they can't be arse, I have definitely heard of children not doing things until later because they simply weren't bothered.
Educating yourself will help so much.
Keep posting as time goes on and you will get good advice and sympathy.
This is so common.

Thanks so much @Raspberrywhite
will try to do all of those things.
i just wish I could see what might happen 😞 I know it’s daft thinking that but it consumes me so much

OP, I wouldn't say that your son doesn't understand because he won't follow instructions or identify colours, numbers, etc. If he does potentially have ADHD/ASD, he may not be fully paying attention or is missing the social cue that he is meant to respond. He could also see direct questions and instructions as demands that make him feel overwhelmed and so he doesn't engage. It's hugely encouraging that he's using so many words and gestalts in the right context, and he is still so young. A year ago, I didn't think my son understood anything that we were saying and now I realise that I was wrong, though he still 'tunes in' on his own terms or when he's not distracted by something else.

I don't think DS had a good understanding of speech. He is intelligent, so he could work out the right phrases to ask for things, from children's shows. His understanding of speech was more significant than what he could say expressively in many ways.

As Mayflowers said it is really encouraging that your Ds has so many words. My Ds had fewer than 50 at age two. What really surprised us was that he wasn't a particularly late reader, though he learned full words and couldn't get the hand of phonics.

Hi my son has just turned 7 and has speech delay and is autistic. I thought might be helpful to share his journey has progressed as i know the waiting can be the hardest!

At turning 3 he was just at the single word phrase and is also a gestalt language processor, what really helped him was visuals for everything and we used an AAC device which helped him quickly progress to sentences. My son is such a visual learner-a lot of gestalt processors are hyperlexic meaning they read early, we realised my son could read at 3 and written instructions help both his speech and understanding.

At starting school he was using short sentences after using the AAC to learn how to build sentences . Gestalt is just another way of learning and I would say try to use it to your advantage , my son can quickly learn chunks and then became more flexible . It’s just another way of speaking but it still fits the purpose!

He does definitely speak differently and sound differently to his peers and is delayed still BUT he is fully conversational, the only thing he struggles with is explanations and explaining how he feels but he converses all day long asking questions and telling me what he needs etc. he also loves learning languages and can speak and write a lot of Spanish (we’re not Spanish he just took an interest in it). Which blows my mind considering I used to keep a book of each word he said and count it every week! His speech is far beyond whatever I ever thought it would be, although it’s still much better with me than when he is with peers for example when he can go very Shy.

I learnt that because he had this hyperlexic brain, I could almost teach him the scripts of what to say for things that were tricky annd he would remember.

And he then uses it in right context. For example we’ve talked a lot about what to say if someone asks him about something he doesn’t want to talk about and rather than saying no, he says ‘no thank you I don’t want to talk about that right now.’ His language will often sound the same, for example the way he asks questions. If he hears a noise he’ll always ask ‘did you hear that mummy? It was a (whatever it was). To the untrained ear that may sound spontaneous but I know it’s his gestalt. they use this at school for asking questions to classmates etc. These scripts really help his confidence and he only uses them in the appropriate context. So it’s all about finding the gaps and helping him with scrips to fill them!

in the beginning, I’d take the script and teach him to be more flexible. E.g he said ‘ I sit on the mat’ we would walk around the house and change the mat to other things and change the sentence etc,

potty training was really hard work but we did crack it just on starting school. Thought we never would but we did, autistic children often find it harder to recognise the sensations so it took a lot of practice. My son is in mainstream school but he has an EHCP and 1:1. He does understand a lot but he finds concepts like history really hard-but he’s keeping up in Maths, loves countries and he reads//spells really well. He struggles to always understand the deeper meanings and plot of stories and I think there’s going to be some subject he doesn’t get, but you realise he knows so much more if you write the question down/give thinking time etc. I think he hopefully will just find his thing and excel at that !

Hope that’s useful-just thought I’d share what’s helped us!

I know exactly that feeling. 23 years ago I felt the pain in my chest would suffocate me with the enormity of his awful diagnosis.
Take it one day at a time.
Music is great and it uses the right hand side of the brain, the side languages come from.
We picked up play instruments and encouraged him to bang the piano, drums, and guitar.
A bit of a racket but we would do it with him and he found it fun.
He started piano at 6 and can play beautifully today.
Small steps.

Thanks everyone. I think you’re right, he must have some understanding to have that many words/phrases.

I’ve realised what makes me spiral is when I’m anywhere like a party where I’m comparing him to others. He doesn’t particularly stand out as any different at this age but just hearing others kids talking properly or sitting nicely and playing with each other really sets me off.

I’ve also got an appointment with the health visitor tomorrow and the last one I left feeling a bit depressed so that isn’t helping.

its so nice to hear your stories though so thank you x

I so remember that feeling, an acute pain at the differences and hurting for Ds' frustration at not being able to join in with conversations. It is hard not to compare, but comparison is the thief of joy.

I also remember the enormity of the word autism, waking me up in the middle of the night, with my heart hammering away. All really ironic as I always been autistic myself. I can't promise but things do feel more manageable after a while.

Is 50 at age 2 normal then? Asking as a mum whose kids ( all 3) never had more than 6 words by the time they had a 2.5 year check

I believe it is or at least that was what we were told at Ds first speech and language assessment. I think from memory they start to combine into two word phrases from the age of two. Ds didn't have more than about 10 or 20. Few colours, few categorisation nouns, which is where the SALT started I think, with animals.

Oh I see. DgC didn't combine 2 words together until just before 5th birthday. Now chats constantly. Went from nothing to full conversation in 6 months