Worried about my DS, likely autism

[andtheywereallyellow]

I’m struggling to manage my feelings about this. Please don’t come for me, I know other people have it 100 x worse than me.

My DS 3 (4 in January) starts school next Sept. He is likely autistic (we are on the pathway and professionals have said to expect a diagnosis). He’s speech delayed, that is the most noticeable thing. He holds zero conversation. He is a gestalt language processor (talks in chunks of language/phrases). He has lots and lots of gestalts and single words but it’s very scripted.

I’m so worried about his lack on understanding and that he never follow instructions, even such basic ones like “pass me x”. He just doesn’t answer or do anything. He understands routine things like “get in the car / dinner time / bedtime etc”. He can recognise some colours and numbers but it’s not reliable.

He’s had a hearing test and is having private SLT and we’re applying for an EHCP.

School applications open next month and I’m petrified. I can’t see he’ll manage in mainstream but we’ve been told he’s not server enough for a special school.

He shows no signs of potty training. We’ve tried with no luck.

I’m so worried about the future. Will he get a job, drive, live independently? I know these are stupid questions as he’s way too young to predict but it’s on my mind so often I’m struggling to not worry. I’m also worried about how it will affect his 3 older siblings. I feel like they’ll suffer.

Has anyone got any tips on how to manage this?

My daughter is now 6 and has an autism diagnosis , she didn’t speak at all until she was four and potty trained at 3.9 . She was also a gestalt language processor . I was a basket case worrying about the future, would she ever be independent. Go to university , have a life . I spent so many sleepiness nights swallowing down the fear in my throat I almost had a break down .my husband and I have little family and no help, there’s not a lot of support and financially it was hard paying for therapies .

two years later she is in mainstream education , thriving , fully verbal , has friends , ahead in her learning. She’s a joy . I can’t believe the change . Unfortunately it’s a waiting game . I wish you all the best . ❤️

Ehc admissions are separate from the normal schools admission system. You name the school you want and it goes to the sen panel at the LA. They decide if they will support it, and if they do, they send the papers tovthe school, who then decide if they will accept or not. It's a bit more complicated than that in reality, but that's how it works in a nutshell.

Where are you with the ehc? You do need to be naming a school soon as other kids will be ahead of you and taking up places.

Don't believe anyone who says he's not 'severe enough' for specialist schools. That's nonsense, get the EHCP and if they don't name specialist appeal.

@Starbri8 I’m so pleased for you about your daughter ❤️ if you wouldn’t mind, would you be able to tell me what sort of therapies you paid for? We’re doing a lot of SALT and waiting for space at a private OT, but I was wondering if there was anything else you found helpful? Or any other advice? Thank you x

Unless the school is wholly independent, the school does not decide whether they will accept it or not. They are consulted, but the consultations aren’t them deciding whether they will admit/offer a place or not. They can be named even if the school objects and they must admit.

If the LA agree to issue an EHCP, the LA should consult OP’s preference whether the ‘panel’ agree with it or not.

It doesn’t sound like the OP can name a school for the EHCP process yet or in the near future. It doesn’t sound like she is at that point in the process yet. But she shouldn’t panic because it isn’t first come, first served and being ‘full’, which isn’t described in law, is not enough on its own for the LA to refuse to name a (non-wholly independent) placement.

Hi there , we were on long waiting lists (live in Ireland )
so we paid for private speech , some occupational , therapy , did some mad therapies (craneosachral therapy ) I was desperate !! Reiki…. I’d have gone to a witch doctor If Ithought it would help 😂 my daughter is a movement seeker and what’s really helped is martial arts class which is is excelling in and got her into a lovely speech and drama class which has helped more then her actual speech therapy. . Lots of places put her on a “ waiting list “ when I told them she has autism , in two years she never got off the list .

her martial arts teacher is nuro diverse so she fits right in and so are many kids in her class. We tried to see how we could use interests she had as/ form of therapy . Martial arts gives her the movement she needs and while she’s not aggressive it’s a release for stress it really calms her and she’s more grounded . Her drama class is a creative outlet but she always tries to do better then the next kid, she couldn’t speak in sentences 2 years ago when she started , now she does little scripts and poems . I wouldn’t have believed two years ago any of this was possible . Im sorry for the long reply with little actual advise but I’d say working on social outlets a little at a time , build it up , see how you can incorporate things he enjoys into life skills .

I’m an older parent as is my husband and we just tried to focus on getting her as independent as possible . It’s not been plain sailing and some days I still get so despondent but I just want you to know there will be lots of wins and some setbacks but it will improve . You just have to keep fighting , I have an older girl too and I know your worry being pulled in all directions…. but it’s so easy to loose yourself and to keep standing . I keep telling myself I’ve been brought to my knees but haven’t hit the floor yet ! Big hug ❤️

Like i said, it's complicated. But you can't assume that all state schools will agree. They can object before they are formally named for example. https://www.google.com/search?ie=UTF-8&client=ms-android-samsung-rvo1&source=android-browser&q=can+a+state+school+refuse+an+ehc+child#lfId=ChxjMe

No tips, but just wanted to say don't despair. My grandson, who is autistic,was very similar at that age. However, over the next couple of years he progressed enormously. He started mainstream school reception at 4.5 years old with very little speech but now age 8 is fluent, can hold a conversation and is extremely immaginative and funny. He was toilet trained at just before age 4 after several months of trying. What worked for him was using a childs toilet seat on the toilet.

You don’t need a state school to agree. Yes, a school is consulted and yes a school can object when consulted, but that consultation is not the same as them saying they won’t offer a place/wont admit. Schools can, and must unless the LA can prove the high bar for one of the lawful exceptions, be named even if they object where they are the preferred placement. And once named they must admit.

Yes, but atm the OP needs to understand that she names a school and she could be disappointed. I knew parents who named mainstream provision and the LA/school said no because the child's needs were way too much for mainstream. Equally I kew someone who wanted the local secondary mld school for their kids because they had gone there - kids had autism but no mld so the school wasn'tappropriate. I don't think it's as unusual not to get preferred state school as you seem to be suggesting.

I agree there is no guarantee the LA will agree to name the preferred school. However, that isn’t what I was commenting on. State schools don’t need to agree and they don’t get to decide whether they will accept it or not. I didn’t comment on how unusual it is to get the preferred placement or not. I was merely pointing out the law because it is far harder to navigate the system when parents don’t know the actual law.

Although parents can appeal if their preferred placement isn’t named. It isn’t uncommon for LAs (not schools!) to refuse to name a placement despite the legal threshold not being met.

The bar for the LA naming special school when mainstream is the preference is very high. The LA may only do so where mainstream would be incompatible with the efficient education of others and no reasonable steps could be taken to avoid that. Although this isn’t the same as a right to a specific mainstream school.

I always suggest that parents get advice. It's such a complex system to navigate on their own.

Thank you for all the advice and positive stories.
It really is so helpful.

I’m still confused. I really have no idea how server his autism/global delay/speech delay is.

I’m still hoping it will all improve by next September and he might be ok at our local mainstream.

We only requested the EHC plan about a month ago so early in the process. I have never heard of a ehcna so I’m not sure whether that’s been carried out. Is that anything connect to an EHC plan?

I’m only aware of one Sen hub attached to a mainstream which is the one I looked at. The children in there did seem quite a bit more severely autistic than my DS.

The EHCNA is the Education, Health and Care Needs Assessment. It is the needs assessment that is first requested as part of the EHCP process. You request an EHCNA rather than an EHCP.

If the EHCNA request was made a month ago, a needs assessment won’t have happened yet.

Within 6 weeks of the initial request, the LA must inform you if they are going to assess or not. If they are, they must seek advice and information from various people as part of the needs assessment. Then, if the LA isn’t going to issue an EHCP they must inform you by week 16. If they are going to issue, they must finalise by week 20 (with a couple of exceptions. Don’t worry about that now).

It is very likely there is more than one hub/unit/resource provision within travelling distance (the maximum recommended travel time for primary is normally considered 45 mins but some travel further).

@roaringdragon thank you. So if I’ve requested an ehcp the ehcna is part of that process? It’s not something separate I need to do or request? Sorry I sound stupid, so new to it all!

I will keep looking for schools with Sen hubs.

If you don't have to send him to school yet definitely sounds like you should wait a year

Unfortunately it feels like children have to ‘fail’ before they get the help they really need. There was a little boy in my daughter’s class who should have never been in mainstream, was forced to start reception and it all very quickly unravelled. However, the unravelling was the key to getting him a special school placement and by all accounts he got on really well after that. I have a friend who works in a special school and they are majorly unsubscribed- not because there isn’t demand but because the council is so resistant to paying for placements. It makes me so cross that there is actually capacity that isn’t benefiting the children who could make use of it.

You don’t sound stupid. No such thing as a stupid question. The EHNCA isn’t something extra you have to request. When you say you have requested an EHCP, you have technically requested an EHCNA.

I really don’t know how severe it needs to be before special school is considered.

My son is very similar and has recently started mainstream school. He absolutely loves it. He is excited to go in the mornings. He’s only 3 so he only does half days but he’s in a mixed nursery and reception class and is doing better than I ever expected. He is not potty trained but he has an IDP and his teachers have been amazing with him. He is taken out of class quite a bit with 3 other little boys his age who have additional needs and they do activities more suited to their developmental level. I think this is good for him and he enjoys it. I was worried that the school wouldn’t be able to cope with his needs but they’ve only had positive things to say about him so far.

@Strawberrycheesecake7 thank you, this is reassuring. What was his understanding like and is he autistic? Hope you don’t mind me asking.

I just can’t see my DS sitting still for anything.

His understanding is very similar to your son I think. He understands routine instructions but not much else. He wouldn’t understand if I asked him to pass me something either. He is waiting for an autism assessment so hasn’t been diagnosed yet but we’re pretty certain he will be.

He does sound similar. How is his talking? Sounds like he’s doing great at nursery. Does he start school next year?

Sorry OP no advice I feel exactly the same! I think it’s the not knowing that drives my worry. My DD is also 3.5y doesn’t talk at all, no understanding, has self harm behaviours and generally is at the development of a 6-10 month old.

@peppy23 it’s such a worry isn’t it? I just don’t know how to deal with it. The not knowing is the hardest part for me. Wondering what life will be like in 5,10,20 etc years is scary.

Do you think your DD is autistic?

Sending love x