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 for the typos, I’m exhausted. The title should say “stories” 🤦‍♀️

Ds was diagnosed with autism at 3 on the NHS.

He didn't say a single word, not one, until he was over 6 years old. I was losing hope and thought I'd never hear his voice.

Then one day at dinner he just started. Full sentences and seemingly bemused that we were so excited. Now you couldn't stop him talking if you wanted to, he certainly made up for lost time!

@NoisyHiker Wow that must have been amazing! That gives me hope. If you don’t mind me asking, what autistic traits did he display?

Yes. It’s all a load of bollocks so far as I’m concerned, largely pushed on us by nursery workers who have read a couple of books and therefore think they have a phd in cognitive development. Your health worker will have a better idea.

Out nursery (and I use the term loosely) flagged up a whole bunch of developmental issues with my son. Then Covid came and I brought him home. He went from being non-speaking to doing his entire alphabet and starting reading on a matter of months. Because basically they were crap and just not bothering to interact with him.

Once it starts, it’s like a floodgate for some children. At 8, he’s now reading three years ahead and had a very wide vocabulary.

There are lots of positives in your post, although I appreciate it may not always feel like that. It’s great that he shows understanding.

Has the SLT done a speech sample assessment to find out what stage of natural language acquisition (GLP) he’s at? As the best strategies to support him will flow from there.

Three is very young and you’re doing the absolute best for him by being aware of his needs and getting him private therapy. A lot of people don’t end up getting therapy until a lot later and I found getting it younger really does help a lot
one of mine was similiar, he was diagnosed asd and wasn’t speaking at 3, he started a bit more about 5 but was in speech therapy until about 7 or 8 to help him learn all of his speech sounds due to verbal dyspraxia
Now at 16 he is actually an amazing speaker as in if you give him a debate topic he will give you a full on speech, delivered beautifully with so much confidence! He will happily have conversations with anyone, you would never know he had problems with speech, which is not something I would have expected back when he was 3.
I really credit his private speech therapist a lot she was fantastic, and don’t underestimate the value of your own input with your child as well - your involvement also makes a huge impact.

I don't know but I do know that having expectations of limitations doesn't help anyone with additional needs achieve their full potential. Start helping him.by never assuming or allowing others to assume what he will or won't do. My ds was meant to not walk properly, not speak. He does both perfectly well. Get comfortable with working on a different timeline and reframe success for your child so you celebrate what they can do rather than focus on what they cannot.

I don't think this is the positive story you are hoping for but I hope it gives you some comfort. My DS8 had a severe regression at 16 months old. He had a handful of clear words and we had no concerns about him until he woke up one morning and he was an entirely different child. It broke me. I grieved my son and was also having to come to terms with the fact my child was ND, but nobody could predict to what extent that would be and what our future would look like.

7 years down the line my son is entirely non verbal, still in nappies, he has global developmental delay and is profoundly disabled. He attends a special needs school and he is in a class of 4 children with 4 adults.

I know how horrific that sounds and if you had told me this when he was 3 it would have been devastating. However, as difficult as life is and as much as I will worry about him until the end of my days, he is the absolute light of my life. He has changed me for the better. He brings me so much joy and we are both happy and life is good!

Whatever happens, it will all be ok.

My second child remained mute until well over 2. The older sibling simply did all the talking for him. I was beside myself with worry, and we had an appointment lined up with a speech therapist. Then one morning he was behind me in the high chair, and a voice behind me said clearly ‘Please can I have more toast?’ The little so and so had apparently been talking perfectly normally when playing with sibling in their room for months.

Hi OP I have a gestalt language processor who didn’t start talking fully till 5. Complete chatter box. Don’t worry give it time. Get on the NHS referral list for speech therapy via your health visitor. Private speech therapy is rubbish in my experience and they have zero experience in gestalt anyway. You could probably do it yourself from all the online resources.

@chasingpirates

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.

As soon as I got to this paragraph, I thought, yes he has autism.

Children without autism, don’t usually flap or require things to be lined up perfectly.

Your DC is understanding though, and currently says phrases, so his speech will develop if he’s currently behind.

Wow! That’s heartbreaking for you all.

I didn’t even know it was possible for a child to be clearly saying words at 16 months to then regress permanently.

Could the doctor’s explain how/why this happened?

Of course. He would avoid eye contact completely with people he did not know, had very repetitive play (stacking the same three blocks over and over again, for hours, despite being offered new or more interesting toys), stimming (spinning, hand flapping), and didn't have normal toddler 'tantrums' over not getting his own way, but would completely melt down over loud sounds like sirens or even pipes creaking at night (was absolutely terrified of public toilet hand dryers and would refuse to go in).

He now gives eye contact to everyone, I'm sure some would say too much but I find it preferable. He still hates loud noises but noise cancelling headphones work well. He has done amazingly on his mocks so far, but needs a scribe. And his special interests have become a strength, I love seeing him get so animated when he talks about them.

No explaination and it was described as a 'severe and sudden regression'. He is unique in comparison to his peers at school, those who are non verbal have always been non verbal. They also didn't smile or make eye contact and they were quickly detected by their HV. I had to ring my HV and say you need to come and see my DS, something terrible has happened. We have videos of our son dancing along and doing the actions to nursery rhymes and other videos of him pointing and saying words. It was devastating.

@Shhush I’m so sorry. That’s so heartbreaking for everyone involved. It must be so difficult especially when there’s no answer x

@RedcarBluecarHadARace When I say he does these things. I mean he flaps his hands maybe once or twice a week. He lines things up about once or twice a day and he doesn’t really seem fussed whether it’s that perfect or not. Does this even count if it’s not that frequent?!

Thanks for all the responses. It’s reassuring progression is possible even if it’s not guaranteed. It gives me hope at least.

I do often think if his speech improved he actually wouldn’t seem that different from anyone else. I think the trouble is I’m looking for things that my other DC probably did but I had no reason to be concerned.

It’s not knowing what the future holds that’s causing me to spiral.

This simply isn’t true. Lining things up is part of a schema which (almost) all children go through. Hand flapping again is entirely normal and is a way for children to feel and express emotions while they are pre-verbal. The difference with autistic children is the extent that they do these things, and the age at which they grow out of them.

To say in your next post that you’ve never heard of a regression in relation to autism symptoms shows that you really shouldn’t be handing out autism diagnoses on the internet, @RedcarBluecarHadARace. OP’s child may well be autistic, but it won’t be diagnosed on the basis of his infrequent flapping and lining up of toys.

@Happyoverthere Totally agree. That on its own just couldn’t be a diagnosis. In fact I think my neurotypical children did these things more often.

My son is autistic and had severe delays in expressive and receptive language. It was a shock to us because he had been speaking early and had lots of words. In retrospect he was probably parroting chunks of scripts from favourite tv shows and was echolalic.

He had pretty intensive speech and language therapy up until the age of 9, along side a mainstream primary education. I am not going to pretend that secondary school was easy, but he was absolutely determined to work hard to overcome his challenges. He got good results at GSCE and A level and more importantly is a kind, sensitive and extremely articulate young man.

If I could do one thing differently it would be to tell my younger self not to panic.

My godson was very slow to start speaking, although he did seem to understand quite a lot. He was prone to meltdowns at the toddler stage when he couldn't articulate his feelings and frustration.
His DM actually homeschooled him briefly, but that was more because a housemove fell through just as he was due to start in Reception, but mum hung on in there, and he seemed to have some sort of lightbulb moment when they finally moved house and began school in the new area. One great stimulus was playing with his slightly younger cousin, as cousin wasn't as adept at second-guessing but loved to chatter.
Once the penny dropped, there was no stopping him. Back in the day, itemised call records came with the phone bills, and I remember when he was a teenager, she ruefully showed me the bill, wondering why she ever worried if he would ever start talking!
He has built a thriving career as a journalist!
Interestingly enough, his DS was exactly the same developmentally, to the extent that his mother wanted to check him out for autism, despite reassurances that he was a "chip off the old block", and happily, he fell into the same pattern, heading for good predicted grades in the upcoming GCSEs.

@twoshedsjackson@Neuronimo
Thanks for these stories.

Can I ask whether they both went to mainstream school and what age they both started talking?

I do keep hoping we have a light bulb moment but I’ve been waiting a while!

My son scripts all from paw patrol or things we say. What gives me hope is that he is progressing.

I do worry about his lack of understanding. I do think he must be ignoring me with some things as he will do them sometimes.

So hope that one day I’m wishing I didn’t worry as much!

His language disorder was flagged at preschool, but we naively signed him up for the local nursery. He received maximum hours of one to one support, from the age of 4 which was 16 hours, back then without a statement (now EHCP I think) The head teacher refused to support us in the statementing process, so we accessed what ever we could privately. in terms of language support.

He spoke early and was combining words at about 14 months, but I am pretty sure, looking back that he regressed. Single words and simple two word phrases by the age of 4, combining and sentences much later I should say, age 6-8 ish from memory.

He did spin and hand flap, but other than trains in a line he didn't line things up. Curiously I did as a child, I have a very late autism diagnosis. He did point and then lost that skill. He'd grab a finger and pull an adult down to play and he definitely did gesture, which I gather isn't something autistic children always do. His autism is described as A typical.

His eye contact was good, but it isn't now. He has learned when it is expected and when it is polite, as we all do. There are some very subtle language differences now, but he loves words and language.

My DS is autistic he had delayed language, started off with echolia. When he got to about 6 his vocabulary started to increase but mostly in reciting tv shows and talking about his interests.
hes 11 now and his spoken skills have increased loads o er past 2/3 years. He can ask questions, talk about himself, he still struggles with nvc and recognising peoples emotions and whilst he can ask other people about themselves he has little interest in doing so.
He toilet trained at 3 in the night and 6 in the day. He’s in main stream working at greater depth though we are not sure if he will stay in mainstream.

No clue what the future holds anything from quirky guy who manages to live independently and support him self to needing significant support for life.
The trick is to live in the present with the child you have and try not to second guess the future. It’s also ok to grieve a hypothetical what might have been but ultimately you have to let go of that and embrace the child you have

My godson, once he started school, went through the mainstream system but not university; he somehow wangled his way onto a postgraduate journalism course after a few years (don't know how he managed that!)
His mum, having been a primary teacher, had a fairly good idea of how his writing skills should be coming along, and role-playing games with his chatterbox cousin certainly helped! She had, before starting a family, specialised in reading development, but felt he would work his way through at his own pace, which he did - eventually.
We did notice that he would echo turns of phrase from TV programmes which he enjoyed, both when speaking and writing, but I guess many children do that. He found spelling difficult, but was very persistent and self-motivating in mastering vocabulary. His childhood ambition was to be a TV presenter, which seemed highly unrealistic at first, but he seemed to find it easier to speak as if in role at first.
I sometimes wonder if his late attainment of some developmental targets reflects on being born early; he came within a whisker, weight-wise, of being taken into the ICU at birth.