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!

My son (who is 7, a twin) had some speech delay, he flaps when he’s excited and is not great with eye contact. Just after he turned two he started to talk more and more. Music, singing helps! I took him and his sister to Baby College and one day, just before he turned two, he started to try to copy the song from Baby College at home. Drummed the drum to copy the beat and tried to sing the words. You can’t shut him up now haha. I had a consult with BIBIC also who came highly recommended by a friend with a kid who has sensory processing difficulties - they provide great practical tips for various situations (we only had an assessment on Zoom - covid times - and they were not much worried about my son).

He just passed his LAMDA exam with distinction - I’m a little lost in their system, it’s either Public Speaking or Verse and Prose, and I think it was stage 3, whatever applies to this age, Year2. They needed to recite a poem and talk about a book. He will probably always have autistic traits, a little bit more than an average person, eye contact not great still and flapping, but I’m hopefully he’ll lead a happy and rewarding life.

i was just looking at old videos, I found one where, at 2.5 years, he’s trying to sing 5 Little Monkeys, with a monkey in his hand, it is still hard to understand, but possible. I always, for this reason, wanted him to do something like LAMDA to improve articulation.

So all in all, see if you can do more singing and maybe speak to someone like BIBIC?

We are in Berkshire so BIBIC was not on our doorstep, but I was prepared to travel if I had to (didn’t need to in the end). From a certain age they do a two day in-person assessment I think. (Not at the age of two. At two, in covid, it was several hours on zoom).

@chasingpirates, I’m following your thread with interest as my DS (3.5) sounds similar. It sounds like he has a lot of strengths and that’s great he’s using various scripts in context.

Have you applied for DLA to help with the private SALT costs? We were awarded DLA recently and it’s been a huge help.

@LassiKopiano24 That’s brilliant progress for your DD! Especially saying things like “I want a drink”. Did that develop from just saying “drink”? That’s where we at now.

Great that she has started using gestures. My DS high-fives but that’s about it at the moment. I do feel that he’ll eventually do those things if he carries on progressing (he’s never done them before)

@mayflowers9 I’ve been advised to apply for DLA. I didn’t think his needs were extreme enough. I really need to look into it as I don’t know much about it.

Can I ask which level you claim? I have no idea which one we’d be entitled to. Do you apply for a particular level or does that get decided for you?

@aster10 Thanks for this information. I probably sound stupid but I’ve never heard of BIBIC or LAMDA. DS does like singing at home, he doesn’t particularly like it in a group. He just gets up!! I should probably do more of that with him.

Yes she started off saying just saying drink or eat and now has started adding the “I want” . Sounds like your DS is on the right track, our Dd’s progress has been slow but steady.

I didn’t know about BIBIC until that friend mentioned it. And I didn’t know about LAMDA until the twins started school. Obviously we can’t know about everything haha! We learn as we go along. I always thought - oh I need to do something to make his speech better and at school heard the acronym LAMDA.

My Little DSR (Dear Son Rhino for those on my other threads) is a GLP.

He learns in chunks so we get a batch of development, then nothing for a while.

Until quite recently he was still in nappies - trained for wee about a year ago, poos about 8 months ago, and now dry through the night.

No one can tell you - but if you look for my old thread ‘My son called me mummy’ under this username you might get an idea of my boy’s progression.

Hi op! Mum to a girl with autism who is now 17!

Started speech therapy age 3 as she was barely talking. Tbh it didn't do much, what did was time.
By age 4 she had caught up to her peers and hasn't shut up since 🤣

She's now almost an adult now, at college with a boyfriend and things are a lot easier. I still do a lot for her (self care wise) but other than that shes a typical teenager .

I remember crying myself to sleep some nights when she was 2/3 thinking she would never talk.

Handheld your LO will get there, don't spend years fretting like I did, just lots of talking, books etc .

Also in terms of potty training, mine was 3.5 when she finally cracked it (7 at night) .
You're doing great.

DLA - when you apply you give as much evidence as possible about how they need more help than an average child their age. They decide your award.

We get the middle care rate. You should definitely apply. I applied with the help of my county’s money advice unit and it was a huge help. In terms of supporting documentation, I included the speech therapist’s assessment, a statement from DS’s preschool SENCO and our ASD assessment questionnaire.

And they decide the rate for you. Feel free to DM if you have any questions!

My younger son had moderate speech and language delay - a limited vocabulary at age three. This made nursery difficult for him and like the OP I was very stressed about it. We had NHS SLT (we were paying school fees and nursery fees, and couldn't stretch any further). His language was still delayed when he started prep school at 5+ and he had SEN provision for Year 1. During that year he rapidly learned to read, at which point I relaxed a bit as there was evidently no fundamental language issue. His speech retained a few quirks for a while - he would mix up male and female pronouns for example. He ended up doing lots of acting and debating at school (I note a PP's comment about being 'in role') and got excellent A Levels including French, and Latin AS. He recently graduated from Edinburgh with a First in History and is currently doing a Master's.
As a teen he went through a difficult time - he found it hard to form friendships - and he was given a diagnosis of Asperger's through CAMHS.

So my eldest is 16 and didn’t speak at all until he was almost four. He just said nothing- he’d make noises and babble away but nothing discernible at all. Then language exploded from him out of nowhere, it was like he’d been storing it all up until he felt confident enough. He’s about to take his GCSEs and set to get straight 9s, is studying maths, further maths, economics and geography at A Level.

My youngest is 5 and also a Gestalt language processor. He’s also highly intelligent like my eldest- he’s been a fluent reader since 3, is amazing at maths and spelling etc. He has an impeccable memory and can order things like book series in order of publication. Seriously impressive. But yes, his speech is behind. He doesn’t reliably communicate with language but I will say he has hugely improved over the past year. There was a stage when we were worried he’d never speak but he’s getting there. We just get random sentences sometimes out of nowhere and it always takes us by surprise. The other day I asked him to do something and he said “do I have to?!” which made me burst out laughing.

Be patient. Most of them end up speaking eventually.

@LassiKopiano24 I really hope that’s our next stage! The fact that DS is talking at 3 is giving me reassurance.

@aster10 I’ll definitely look into those. I’m trying to learn so much but it’s a minefield online!

@Merryoldgoat Thank you, I’ll take a look.
Can I ask whether your DS is autistic?

@@Doyouknowdanieltiger Thank you. That’s good to know. It really does keep me awake at night, I’ve even been dreaming about it. Sounds like your DD is doing really well x

@mayflowers9 Thank you. If it at least covered some of the SLT I’d be grateful!

@MadameMaxGoesler Wow that’s amazing progress. What age did you notice most progress?

Don't agree.

Everyone told me DC3 had autism as they lined everything up, sorted everything into the correct boxes, used to go into shops and make the labels face out. Flapped when excited.

Now mid 20's, not autistic, but very tidy/ordered and still animated when excited.

@Sartre Thank you, that’d reassuring. Sounds like your DC are doing really well.

I do hope DS is storing it up. More of what he’s saying is in context. I really hope he starts answering questions a soon.

@Ducksurprise I agree, this alone can’t be a diagnosis. My other DC are not autistic and lined things up and spun around.