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!

Thanks @AnotherName2025 The advice seems to be say less such a “drink please”. I think that’s helping.

Trying my best not to worry x

He sounds like my DS at that age. Only mine had sensory issues and was prone to running away randomly, always looking for an escape route. He spoke in echolia only, could recite parts of a TV show (in the accent of the show) but couldn't piece a sentence together. Diagnosed with autism at 3. Between 4 and 4 and a half it was like by magic everything improved dramatically and he started to catch up very rapidly. By 5 his issues were manageable and unrecognisable from 3.

He had some behaviour issues in primary school mostly interrupting by shouting out an answer or talking back. He needed fidgets and was able to find strategies to keep himself sitting down. He was later diagnosed with ashd so no surprise there. Home life was difficult. He was hyper, quite disruptive when young and argumentative when older. He is now 18 and is a little old for his year due to starting late and speech delays. The autism is pretty invisible, he is popular and sociable and has good social skills. He is very charming. He isn't doing his final exams (A level equivalent, we are not in UK) until next year. He is a straight A student and is very clever but also works really hard at what doesn't come easy. He plays at a senior level in a local sports team where there is a lot of local status and pride. He trains almost every day and studies around this. He works 1 evening a week in a hotel and has a Summer job lined up. He has worked Saturday jobs since 17. He has his drivers licence and uses my car as he wishes. Honestly to the outside world he is a golden boy and a high achiever. At home he can still be tricky to manage but he is an amazing in his determination and work ethic. The plan is university and something in finance. He is absolutely capable of independent living and the future is very bright for him.

All the boys in family , bar one who has a different grandad) are very very slow to talk and have a mix of adhd/autism/global delay. I describe it as “front loaded” struggles as it’s always been very worrying for the first 4-5 years but then they slowly improve. My own two sons, and 3 nephews across two siblings were exactly the same. But every single one of the has improved massively around age 6-7. My eldest son and my eldest nephew are incredibly intelligent despite being non verbal until they were 5. Both passed all of their GCSEs with flying colours. My two younger DNs are both still in school and are doing well although the youngest is in a special unit as he struggles with a diagnosed language processing disorder and has an EHCP. Currently going through similar struggles with my 4 grandsons age 1-5. But again, with SALT and a very sportive nursery and school team and also with us having so much history through the family we’re know per much exactly what to ask for in terms of support so we are very lucky that the over loss will benefit from the stuff wet went through 20 years ago.

Honestly, don’t lose hope. What your situation looks like today, a won’t necessarily be the same tomorrow or in a month or in a year. I was and still am often surprised at what a difference a few weeks can make and how rapid progress can be.

5mthf drops. methylated multi vitamins and a good multi amino acid supplement has really helped in our family too.

@GreenGodiva Thank you. So interesting that has been the same for all the boys with you. Are there girls on your family too? Most of the posts on here are boys too. It’s brilliant how much progress yours and your families’ kids have made. I have heard a few times between 4-5 sees a big jump in progress.

@@Dontlletmedownbruce That’s interesting your DS picked up the accent too. Mine is doing the same.

Did your DS have a good understanding of instructions or colours/numebrs/letters at around 3 years? That is what is concerning me more than the speech. He really doesn’t get some very basic things like “put that book on the table” for example.

Your DS has done amazingly, you must be so proud of him.

We had 7 boys in a row in my family! The last daughter before the run of boys was my youngest who is 18. She was an absurdly perfect child. Hyper verbal, reading and writing before school, inquisitive and loved school. Did brilliant at primary. Then she went to high school and by 14 she followed the same/similar path as me and my eldest daughter. I left with zero qualifications and flunked out massively. At the time I thought it was due to abuse. My eldest dd tried at high school but just wasn’t academic or interested and got into lots of trouble and failed her exams. My youngest went from predicted a/bs to failing every mock. I started researching adhd in girls and we scraped enough to get a private diagnosis. 5 months later she sat her exams ….she passed everything with flying colours. So my eldest dd Andrew’s youngest dsis and myself also pursued an adhd diagnosis as adults. Turns out it’s so prevalent in our family that we couldn’t see the wood for the giant adhd trees. But it presents very very differently between girls and boys. The next girls is my niece who is just 7mo old.

with girls in our family it’s very much a social/emotional regulation, impulsivity, daydreaming scenario that typically kicks in about 13-14. Before that we’re manage to cope fine by mimicking everybody else and doing what’s expected. I’ve never felt like I’ve fitted in and got a diagnosis of bipolar in my mid 20s. My eldest dd and my youngest dsis have eubpd on their files. But we are also diagnosed with adhd now so hoping to remove the historic and inaccurate diagnosis from mine atleast. I am not bipolar. I haven’t been truly depressed in years and haven’t had true mania either.

@GreenGodiva 7 boys in a row!!

Sorry you’ve had a tough time but glad you are able to recognise it and get support now.

@Helpboat can I ask whether your DC is ND?

So much of what you have written is so familiar.

Hugely delayed speech, late walking, flapping.
We put huge effort into him and his education and at 25 he has aced university and is working for a large american multinational.

I can tell you we got a diagnosis at 2 that broke our hearts.
He is a bit quirky, but his girlfriend is gorgeous, lovely, and very keen on him.

@Raspberrywhite Wow that gives me so much hope. You must be so proud!

Can I ask when he started talking and what his understanding was like?

His speech was very slow for several years.
We were all over it helping him with exercises, sounds for years. We got great direction from his speech therapist.
I now believe he has verbal dyspraxia which was casually mentioned amongst other things 23 years ago.

I made sure his diet was excellent, full of healthy gut foods and omega's and just good food.
This wasn't easy as he liked carbs, white bread, pasta and rice, but i made packed smoothies, hid veg in sauces.
I did extra school work every summer, reading, writing and math.
He was always prepared for school, homework always done very well.
We had really good routines.
He learned the piano for many years.
It was not easy.
But the payback is that he is an independent young man living in another city in a profession.

He received huge time and support when he was young from me.
I read every day with him to get him into reading and that joy sustained him to this day.
He is very curious and fact driven.

He was always very busy playing lego and with his dinkys, loved thomas the tank engine.

To help his speech and sound making, we played farm animal sounds every single day, on the instructions of the speech therapist.

Sounds like my DS at that age, well yours is a bit more advanced. I felt the same way you do, I was consumed with worries for his future. The main change has been me, I just had to accept that I'm not going to know what adulthood will be like for him until we get there so I really need to just enjoy the present with him. He's 5 now, progress is slow and sometimes there's a step back but he is really happy and I'm sometimes amazed at little things he does that I worried he never would do. He is in a mainstream school, he doesn't have typical friendships in the way that he can't have a conversation or get involved in some games, but he smiles and laughs with children in his class and some of then are so lovely with him and try to involve him. He has a lovely bond with a few adults at school. He is learning to read, he can do simple addition and subtraction, meltdowns have really reduced. His ability to follow instructions has improved, his communication skills are still very different to his peers and more like an 18 month/2 year old but it's not having as huge an impact on him that I expected and I think that's because he has family and teacher/school staff that understand his needs and support him in the right way.

@JLou08I think you’re right I do need to managed my expectations. It sounds like your DS has progressed so well with the right support. I found the same as you that some weeks we progress and then it will slow down. I’m trying to celebrate the small wins. Touch wood we haven’t had any meltdowns, probably less than my older DC. Of course that could all change but I’m trying to see the positives.

Did your DS have speech therapy at all?

@Raspberrywhite Thanks for this, it’s given me a few ideas on where I could do more. It sounds like your input has done wonders for your DS.

I had very delayed speech and I caught up, and indeed went on to study Medicine at Oxford!

My son was very like yours at that age. He suddenly "got" potty training at 3 years 4 months. He went from being on the SEN register at preschool to being near the top of his class now aged 7. He's in Year 2 and is reading Enid Blyton and Roald Dahl books independently. He does still line his toys up and he loves routine and structure, but he plays well with peers and enjoys tennis, chess and football.

I know it's easier said than done, but try not to panic. It's far too early to tell what will happen long-term. Take care x

Do we know the reasoning behind never developing language?

my DD is just 3. Whilst she hasn’t any language she also doesn’t show any signs of understanding either. When we try and interact she is is not interested. You call her name and there’s no reaction, or we could get back from the shop and she wouldn’t bother. She doesn’t interact with people that come to the home.

Are there any stats surrounding the likelihood of children developing speech when they have a presentation like this? She isn’t silent she does have an mm sound but that’s it.

sorry op I didn’t mean to hijack your post. I get the worrying I really do. It’s so hard not to worry sometimes. Your mind goes in to overdrive

@HardFuckingBird thanks so much. It does seem some kids just develop later. I had assumed it was now too late to think that he might be so many do catch up between 3-4.

I’m dreading potty training. He struggles with some really basic instructions but we’ll give it a try this summer. I’ll just keep my expectations very low!

When your DS was speech delayed, did he ever answer questions?

@whatifs1 No problem at all!

Has your DD have any speech therapy or been referred for assessment?

Honestly I don't remember clearly. I do remember that he didn't respond to his name until he was about 2, maybe older. He wasn't good at eye contact and we didn't get much back from him at all. But by the age of 3 I do think things had started to improve.

DS did not speak at all until he was 4
I managed to get him statemented at pre school and he had SALT input until age 12/13 due to stuttering and language delay
He is now 30+ diagnosed with ADHD and a generally well rounded adult who holds down a high pressured job - he’s still very quiet!

@HardFuckingBird that’s good to hear. I think my DS only started responding to him name sometimes at about 3, a bit more often now but it’s improving at least.

He does seem to be making progress just in the last few weeks so really hope we’re at a bit of a turning point, like people seem to say will happen. Never dare get my hopes up though!

@JaceLancs did your DS have much understanding at around 3 years or before he could talk? I’ve often wondered about ADHD with my DS. He had some autistic traits but I’m wondering if it’s more an attention thing. (Sorry if that’s not the right term, I’m new to all of this).

Yeah, he has a couple of months of private speech therapy as I was getting nothing from the NHS. The therapy was more about me learning strategies to use with him. The referral to SLT was over 3 years ago and it was only a couple of weeks ago the NHS actually decided to provide some support. They are using the Hanen programme, we're waiting on allocation of a speech and language assistant to come and do some work with us. They're also offering training to his school staff.

@JLou08 3 years!!? That’s crazy. I am still waiting the NHS referral although it was only requested last summer. I’ve heard it’s not greet. I’m finding the private therapy useful though but ££££!!

My daughter is very nearly 4. Diagnosed autistic an a few weeks ago, which was not a surprise to us. She never developed language or gestures so didn’t regress, also diagnosed with global developmental delay.

Over the last few months her vocab has expanded tenfold, mostly single words but also some sentences “I want a drink”, I want to go to the garden”, “Help me please” we are over the moon, gestures have been slower, she claps, high fives, waves, pointing is seldom still.

She is now imaginatively playing, taking an interest in other children and family members, wants us to join in play with her.

She has never walked on tip toes or “flapped”but she does have a few sensory issues, doesn’t like getting wet unexpectedly or things on her hands and can meltdown in busy environments but its rare.

I totally understand your worry, it’s so hard not knowing whats going to happen or how far they will progress, I find that part the most frustrating.