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!

I guess there are children who don't reach the typical milestones for all sorts of reasons. Ds had one friend who had a severe delay, because he had glue ear for instance. He caught up pretty quickly.

Sorry for not replying.

Interesting to hear all the different stories.

DS was just about reaching 50 words at 2yo but not combining any which prompted a 3yo review.

Had a few days of panicking about things less this week, not sure why as nothing has changed. Hoping to the see the HV next week.

Glad you are ok OP and that you are seeing the HV for some reassurance next week. Children really do differ so much.

@Neuronimo Thanks you. We’ve had some new words and phrases this week so that’s positive. Trying to notice these more rather than the negatives.

Can I ask if you suspected your DC had additional needs. When did you contact the local school? DS starts next September (2027). When would I talk to them considering applications are from November this year? Thanks x

We already had an independent education plan in place at nursery, so we just followed the guidelines for general school applications. We'd had input from the local senco and it hadn't been indicated that ds would need an independent special school.

It may be worth asking to speak to the senco of the schools you are considering, before the summer break. I am very out of touch with the process though, so others may have more up to date advice.

@chasingpirates my DS is also starting school in September 2027 and we have just begun working on his EHCP with his preschool. My understanding is that the EHCP will (hopefully) guarantee additional support within a local mainstream school. They are also necessary for admission to specialist schools, though DS likely wouldn’t qualify as they are so oversubscribed. As a pp suggested, you could contact the school’s SENCO and ask if an EHCP would be helpful. I would do so asap as it’s better to apply sooner if needed.

My autistic son didn't really talk or gesture until he was 4, when he suddenly started speaking in adult style sentences. He also wasn't potty trained until very late.

He was diagnosed with autism and ADHD.

He needed additional support from 4 to 8 at school and so on, but he went on to get 3 A*so at A level and is currently at one of the top 3 universities in the country, ln course for a first class masters degree and - after that - I'd imagine a PhD.

Every person with these conditions is different. My DS needed extra support to thrive, but with it, he thrived.

His Autism nowadays is managed. He understands himself. He surrounds himself with trustworthy mates. He knows what he needs and ensures it's in place.

His ADHD as an adult is more of a problem: it causes him a fair amount of additional stress but the key is knowledge and support.

I would encourage you to learn to advocate for him as the system can be patchy...postcode lottery and likely severely diminished over the last 20 years.

Yes though, he lives a full and normal life. He grew up into a particularly thoughtful and kind adult. He has a handful of really, really good friends, he's emotionally more empathetic and connected than most neurotypicals I've met. He's hilarious and great fun to be with.

We manage the extra stress by just understanding it's triggers and how to soothe it. Knowledge is power with neurodiversity.

@mayflowers9 thanks, that’s helpful. I’ll speak to school next term before the summer holidays.

This might be totally wrong but I thought EHCPs were all changing and being reserved for only those with really complex needs and something else replacing it. Sorry that’s not a very help explanation, I can’t quite remember what I’d heard.

@PerryMenopaws Sounds like your son has made some excellent progress. It does seem a lot really progress from 4 onwards. Can I ask when he was potty trained?

I’m trying to think of my DS being about a year behind so although he’s three what he’s doing now is about typical for a two year old. Just hoping the gap doesn’t widen as he gets older.

I think you’re right, educating myself is so valuable.

@Neuronimo Thank you, I’ll definitely get in touch with school in the next month or so and talk to his preschool about how they can help.

I think the change to EHCPs will happen in 2030. FYI the special needs board on mumsnet is hugely helpful if you have any questions about support in school.

I think he was around 4. Basically like everything, he did it when he was good and ready. Try not to worry.

@chasingpirates, have you introduced the potty yet or are you waiting for signs that he’s ready? Potty training was very gradual for us – at first, we only kept his nappy off at home and he wore one to bed and out of the house. Then we put the nappy back on because he was resisting the potty and would leap off when we sat him down on it. And then one day he went over and used it on his own, cheered and was so proud, and he got it from there, though he still has accidents sometimes. I think he needed to do it on his terms when he was ready, but introducing it slowly helped. And summer is a great time to walk around without pants haha, so maybe try introducing it if you think it’s a good time.

Potty training was a nightmare for us. It didn't help that Dh kept putting Ds back in nappies. I was at my wits end. He wasn't trained ready for school, but within a week, he just completely followed the lead of the other children and staff encouragement to take toilet breaks.

Thanks @Neuronimo and @mayflowers9
I’ve tried him sitting on the potty and it’s in the bathroom but he gets straight up. I don’t think he’s got a clue right now. I’m very doubtful he’ll get it this year but we’ll have a try this summer. I think it’s going to be a nightmare!

@chasingpirates, he will get it in his own time! It is indeed a total messy nightmare haha

It did feel never ending but all of a sudden it was sorted. As Mayflowers said he will get there.

@mayflowers9 haha to be honest it was with my older two and they had no commutation or understanding problems so I’m going to be bracing myself for DC3 😅

Thanks @Neuronimo You’re right, we’ll have a try and see what happens. Not much we can do if he’s not ready I guess!