So so worried about DS’s delay

[iwannaholdthehandinsideyou]

My DS 3.5 is so developmentally behind. I’m so worried I keep feeling sick.

It’s mostly his speech and understanding.
he’s not non verbal but speaks in phrases so no conversation at all yet.

He doesn’t understand basic instructs at all.

We’re on the autism pathway and having private SLT.

He starts school next year and I just can’t imagine him in mainstream.

He’s showing no sign of potty training.

Sorry not sure what I’m asking but need to get my thoughts out.

Hi,

I don’t have any advice but my nearly 4 year old is similar except we managed potty training. It’s really hard seeing others managing to do things so well when everything seems hard for him but I try and focus on the things he is really doing well with.

It's okay to be worried sick, it's what we do as parents and you WILL be okay. Promise.

Clearly there are age development markers, but remember they are a curve, so some children will hit them early, and some late.

Some also hit them later because they have extra challenges, and it sounds as though having a SLT involvement is the best possible option, especially as early intervention in possible asd is really helpful.

Can you apply for an EHCP to see if he may be able to go to a SEN school? Maybe have a look at some FB groups for parents in similar positions? I can see how its worrying for you. Maybe someone will more lived experience will be on soon to advise.

Thank you, he is progressing just so so slowing and the gap is getting bigger. I find it almost impossible to compare.
We’re looking into an EHCP. I don’t know why but I’m so worried he’ll need a special school which is stupid if that’s the best place for his needs.

Sounds like gestalt language processing. My son was exactly the same and hes 7 and still not potty trained. I have never been able to get him to sit on a potty or a toilet. No professionals would believe me until they also tried. Continence team have been no help to us, and a woeful lack of children's OT in my area.

Please look up gestalt language processing, it's common among autistic children who are pre-conversational. It's been a few years since we had SALT but it was only during our last sessions that they were actually trained on GLP, so it may not actually be rolled out with NHS everywhere in the country yet.

In my sons case he is now "verbal" but you won't get a conversation out of him. He can say a lot, and he forms his own sentences, but if you ask a question he can't tell you an answer. He sounds fantastic when he's in his own little world but the most you get from him directly is about what he wants or rather doesn't want.

Also, please don't fret about school. A. If you send him to mainstream they will support with intimate care, and can provide invaluable evidence for EHCPs. B. You also don't have to wait for school to start the EHCP process if you think you might need to go straight to specialist, you can apply online yourself on your LAs gov page.

You also don't need an EHCP to ask specialist schools if you can look round, ask questions, find out how they support children with communication issues etc.

You don't need a diagnosis for an EHCP either.

It is scary, but take it from many of us who are years into this, it gets less scary, and knowledge is power. You are your child's best advocate, nobody knows your child like you do, and you know more than you think you know and are more capable than you think you are.

This was me 1 year ago. DS was as you've described and my feelings were similar to yours.

I know it seems scary now but it'll just become your new norm. You'll learn to accept the challenges and you’ll hopefully take a bit of comfort in knowing that you've given him as much support as you can. There's no miracle fix- i think it's a case of building on lots of different elements- SALT, potty training, a balanced diet, exercise etc.

Was his hearing tested at all? We had similar situation in our family and once undiadnosed hearing problems were addressed all development issues are slowly being addressed, and improving.

Yes he’s a GLP. He’s currently around stage two showing some signs of stage three.

We’ve had his hearing tested and that’s all ok.

Thank you all. I just can’t stop worrying, it feels impossible to accept it. I know I sound ridiculously dramatic and there’s so many parents worse off but I just find it so stressful not knowing the outcome.

if you search under Talk there are parts of MN dedicated to parents of children with SEND

It’s understandable to feel worried, but you’re already doing the right things by getting him assessed and supporting his speech. Try not to worry too much about school yet, as there’s still time and support can be put in place around his needs.

Just focus on the child in front of you now, assess what their needs are right now, not what they could be in 6 or 12 months.

Right now they have clear communication and interaction needs.

Toilet training can be done without showing signs of readiness. ERIC can help, they have dedicated SEN support, but don't kick yourself if it doesn't go to plan. Like I said, my son is 7, 8 in April, and whilst he can physically do a stand up wee in the toilet now which took so much creativity to get him to do, he has never sat on a toilet and he still can't tell when he's doing a wee and when he isn't so we have a lot of accidents.

You could try introducing AAC, there are low tech ones and then theres high tech ones on tablets, but which ever you choose do it consistently.

AAC does NOT stop normal language development, in fact it's actually more likely to help by providing functional phrases reinforced by tactile input.

The autism diagnosis is important, because it can open doors in the future to other support you may need but if you found out right this second whether your child was or wasn't autistic, it wouldn't change your approach right this second. You'd still see a child who has needs right in front of you and you'd do what you can to support them, because you're a good mum.

Sending a big hug, it’s not easy seeing your child be different to others. Is he in a nursery/preschool setting? Can they start the EHCP process?

My nephew who has autism and ADHD was such a different child at that age. He would never listen or understand (I believe) couldn't speak yet and would run under the tables once he started school and laugh and not be able to concentrate and do the work. He was so behind academically and struggled through primary school. Now at 15 he talks, he's ahead of his peers academically, he has a bright prosperous future and you honestly wouldn't even realise he was such a different child in his early years. He had intervention and went to mainstream but I believe the therapies really helped him to grow and learn and supported his developement. I know it's hard to not worry but there is hope and noone really can tell you what the future looks like so I think the best thing to do is to get him some support and take it day by day!

x

Why do you feel sick? He isn’t dying. My DS is 6 and also non verbal, though he’s what you’d call non conversational now. He won’t naturally have spontaneous chats with me about his day but he has an expansive vocabulary and is now thankfully able to express his needs which is important. He’s highly academic, in mainstream with 1:1 provision, passed phonics screening with full marks, top reading group etc etc. You don’t need to feel sick about this, autism isn’t a death sentence.

She is allowed to be worried about her child having additional needs? It isn't a death sentence but nobody actually wants a child with extra needs because it's life changing for both the child and the rest of the family You don't have to be so dismissive of her feelings.

Hey love i think you just need time to process it- all the anxiety about future etc is a mechanism to protect yourself so please please be kind to yourself - autism is a spectrum and you dont understand how it will present/how you will cope

what i will say is stage 2 GLP is progression and hopefully he will continue through the stages- mines 5 and with the help of a clean diet, supplements and detoxing i nowhave a happy intelliget, stimmy boy that doesnt require any support so far at school (but at home we try regulate him as much as possible) and are in talks with his teacher regarding school support

just know you are already living everyday what you have anxiety in the future about, it will take you some time but once youve accepted it things will defo feel better and easier for you! I hope you are able to get support to deal with coming to terms with everything- just know he will have his own timeline with things and so comparing him against neurotypical milestones is useless

here if you ever need to talk or want support! X

Just re the toilet learning /potty training. You don’t need to wait for signs of readiness. Some children may never show signs of readiness.

eric.org.uk/potty-training/

I would request an EHCNA ASAP. On their website, IPSEA has a model letter you can use. The process takes 20 weeks, but many have to appeal, sometimes more than once, and the wait for Tribunal is long.

Is DS in nursery? If so, what support are they providing? If they need more advice on how to support DS, they can ask the Area SENCO for advice and, if your LA still has them, they specialist teaching service. If they need more funding to support DS, they can apply for early years inclusion funding.

Many special schools wouldn’t allow you to look around without even being in the EHCP process. Even then, some don’t allow visits until the LA has agreed to issue. And some not even until the school has been named!

@SartreThanks for that, a really helpful response.

Thanks everyone else. He’s at pre school 3 days a week. They are putting support in place and starting the EHCP process this term. He loves going and seems to cope well.

Thanks so much @peanutForever

Really hoping for a lot of progress this year. He’s made a lot since last year.