Stories of hope non verbal asd going to school

[Putdownthecake]

Hi there,
I'm looking for stories of hope. My son is 4.5 and going to school in September. He is non verbal, in pull ups and not at all school ready (not sure he ever will be).
When he started nursery, he would hit himself, meltdown, suck on his clothes, stopped eating and barely slept. This lasted 3 months. Now he loves it and runs off but is still very much in his own world.
Sen schools are massively oversubscribed where i am but he has got a mainstream school with a specialist unit within it.
I am just after some stories of hope.
I genuinely think my love for my son will be what kills me. I am so suicidially depressed watching the person I love most in the world struggle and I just can't seem to help no matter how I try.

Does your DS have an EHCP? If so, did you try and name a specialist provision? Providing the school isn't wholly independent, simply being 'full' isn't enough of a reason to deny him a place. I know several parents who have won appeals for specialist schools who said they were full/over subscribed.

Is your DS actually in the specialist unit attached to the mainstream primary?

What sort of transition is in place for your DS to start school? Have you met with the Senco/his new class teacher? What sort of support are they putting in place?

All these things will be what will help your DS achieve his potential.

It's great that your DS has settled at nursery - that's really encouraging. Hopefully he will come to love school too.

Every DC is different and of course you know that, but I have known DC who are/were non verbal make huge improvements in their communication skills once at school.

What sort of speech and language support is your DC getting?

I feel the love you have for your DS in your post. You are his best advocate in life. If there are any specific questions you have about getting him support at school do post again - there are some very helpful and knowledegable posters here.

@Toomanyminifigs thank you for replying to me.
We did not apply because we were told we would be rejected and then end up in our catchment school. We weren't allowed to choose another. My son does have a ehcp. We thought it'd be better to go to a mainstream with specialist autism unit/trained staff and appeal for specialist if he cannot cope. Our thinking was that reception year is more relaxed than year 1.
Hes not in the unit as such, it's hard ti explain. There are 2 other children like my son and they will have an individualised timetable so for a lot of the day they'll be in their normal class but they have their own building theyll go to when other children are having to do more real work so to speak. They'll do things like attention autism etc.

Transition is a 1hr stay and play with parents then a 2 hr drop and go. This likely won't work however. Once my son feels safe, he will be happy to go but this will take months.

I pray he makes improvements. He is genuinely the sweetest little lad

New sendco is amazing and has worked in complex needs schools. They seem to be working hard. Teacher seems nice.

S&l is a joke. He gets a speech therapist see him about once every 6 weeks for 10 minutes in his nursery. His nursery are supposed to be helping with his pecs but I don't think they are.

I really pray for progress.

Thank you again for replying

Unfortunately, you were badly advised about special schools and the EHCP. If you want a special school you should request an early review of the EHCP in order to try to name a specialist school.

Have you spoken to the SENCO about enhanced transition. DS needs more than the 2 sessions you describe.

S&l is a joke. He gets a speech therapist see him about once every 6 weeks for 10 minutes in his nursery. His nursery are supposed to be helping with his pecs but I don't think they are.

SALT should be detailed, specified and quantified in F of the EHCP, is it? If it is you can enforce it. It should be more than once every 6 weeks for 10 mins.

Have you had social care assessments? A carer’s assessment for you and an assessment by the children with disability team for DS.

What does it say in Section F of the EHCP about speech and language? That is the part of the EHCP that is legally enforceable. As your DS is currently non verbal, it would be reasonable to expect a considerable package of detailed support to be in place.

I take it your DS was assessed by speech and language as part of the EHCP process? Their recommendations should have been put into Section F.

If you do appeal his school place, you should also look at appealing parts B and F of the EHCP. It is so, so important that the recommendations in Section F and detailed, quantified and specified.

Who told you your DS 'would be rejected' if you applied to a specialist school?

There is some good info here about what an EHCP should contain:

https://www.ipsea.org.uk/what-an-ehc-plan-contains

And here about your rights when choosing a school if you have an EHCP:

https://www.ipsea.org.uk/choosing-a-school-with-an-ehc-plan

It sounds like the school he's due to attend is receptive and supportive which is great.
I think you will need to keep on top of things though in terms of what they will actually be doing with your DS 'when the other children are having to do more real work'. Who will be teaching your DS then? What support are they putting in place so that your DS will be able to access the curriculum?

Has anyone from the school met with your DS/his key workers at nursery? I would expect a very full and lengthy transition plan to be in place by now, given that there's only 5 weeks left of term.

I know it can all feel overwhelming at times and sadly it's a constant battle to ensure our DC get the support they deserve and need.

Ipsea and SOS!SEN offer free advice helplines. They can be difficult to get hold of but it's worth keeping on trying - their websites are very helpful too.

@Putdownthecake just wanted to say I sympathise with you and I too would love to hear some positive stories my son will be 4 in September and start school next year September 2024 so I have another year . He’s also non verbal to date and not yet potty trained. Is they any chance you could delay his start date ? I may delay my son by 1 year if I feel he’s not ready .

My boy started reception last September. He is non-verbal, not potty trained.

We were having to fight to get him special school. The clincher for us was getting the school SENDCO to visit him in his nursery setting and realise that the school wouldn’t be able to look after him properly.

On paper they were talking about all the things they would do, but when she saw his needs it was different.

He’d never have coped in mainstream.

Thank you for the replies. Sorry I've taken some time. I am truly just treading water trying to find some strength.
To answer questions, no to carers assessment. I have asked my health visitor to look into this. I believe they'd probably just offer early help which I don't need (EH is my job).
As far as ehcp goes we are in first final stage. It is quantified but as in 3x a day 10 minutes which just doesn't happen.
As for specialist school, told by the head who took us on the tour. Wait list 99 and we would not get in. And I suppose I have fears my ds will worsen. Perhaps silly.
New sendco has been to nursery to see my DS. No idea on accessing curriculum and agreed with regards to transition. As far as I can see besides being offered to go in a different day to others, there is not much different to other children.
I will not delay my sons start. Reception year is less intense than year 1. If he's not going to cope, I'll have a school on side to help with the fight to get into specialist.
@SachiLars is your ds toilet trained now?

Just to say that I have seen a lovely non-speaking autistic boy, who was at nursery with my DD, start in a MS reception with a full time 1:1, and I felt very worried for him initially that he wouldn't cope, but he has blossomed and is now using language and doing so well in himself.

I also know another autistic boy who went to special school and couldn't speak or use the toilet before going. Within a year he had learned to use the toilet and started to use words. He now has a lot of language, although you always get the feeling with him that language is not his "natural' communication method, if that makes sense, yet he can make himself very understood.

I follow Fidgets and Fries on FB, and one of her two autistic sons is a non speaker at age 17, and he uses an iPad to communicate. There is amazing stuff out there now with technology.

If section F is detailed, specified and quantified with no woolly or vague wording such as “access to”, “would benefit from”, “opportunities for”, “regular”, “e.g.”, “such as”… but isn’t being provided you can enforce it. Email the Director of Children’s Services informing them of the situation and reminding them of their duties under s.42 CAFA 2014. If that fails emails again threatening judicial review. Then, if that doesn’t work contact SOSSEN for help with a pre-action letter.

Contact have model letters on their website, you can use them to request a carer’s assessment and an assessment by the CwD team.

Don’t listen to the LA and HT about not getting a place in SS if that is your preference. Unless the school is wholly independent being ‘full’ (which isn’t defined in law) is not enough of a reason to refuse to name your preference. The LA has to prove the school is so full admitting DS is incompatible. The bar is far higher than many LAs and schools care to admit. It is more than an “adverse effect”, “impact on” or “prejudicial to”. Admissions via EHCPs don’t have waiting lists in the same sense mainstream schools do for the normal admissions procedures.

@SimilarToAClockShape what a lovely post 🥰

He’s not toilet trained yet, we’ve got a plan to do it this summer following a programme the paediatrician suggested we look at. Fingers crossed it works - he doesn’t want to wear his nappy in this hot weather.

Hi @Putdownthecake, I was just wondering how your son was getting on in school? As I have similar worries about mainstream vs special school for my DD who is due to start next year. Also non-verbal and awaiting an ASD assessment.

@Ponche hi. I couldn't have asked for a better mainstream school. My son is in a 3 staff to 3 children ratio class in a separate mobile to the main reception class. He accesses main reception during less structured activities. He is so happy and adored. He literally runs through the gates like forest gump. He's been accepted into specialist as realistically mainstream would be ok for him in reception and Yr 1 possibly but definitely no longer.
Hes starting to say a lot more and understanding has increased a lot but will definitely require intense support for education

I just re read my op and i don't recognise that person anymore. I was so depressed and so worried about my son. I needn't have been. He settled within a week. No self injurious behaviours. Just so so happy.

@Putdownthecake fab update delighted your little boy is doing so well. My little boy will start mainstream in September with a 1 to 1. He will turn 5 end of September. He’s potty trained and has no behavioural issues and very happy and adaptable but he’s still completely non verbal. Can I ask when and how your little boy started speaking I’m not sure we will ever get to that point at that stage but still hoping to hear his voice ! He’s been accepted to mainstream but we will play it by ear see how he goes .Thank you .

@FinnsMammy my son did have words up until around 14months then his development completely regressed. He's always been very vocal and loud but not understandable. We started introducing pecs and aac and that seemed to help but I really think school has helped him a lot. My son is classed as pre verbal instead of non but he responds yeah, ok, go, mum, dad. I think my son has learning difficulties too but where I am its just labelled autism. By the sounds of it your lad is doing amazing so I'd be surprised if words don't come. My son said love you for first time just over 5.5yrs. Good luck with mainstream. How does your son get his needs met now? If it gives you confidence, a non verbal friend in my sons class has also just started speaking. He used to scream until about a month ago. Now he's had an explosion of language! Especially 5yrs 7months x

@Putdownthecake thanks I potty trained him the end of June last year . He points to what he wants or hand leads or uses objects of reference . He knows his numbers, colours, alphabet, shapes , animals so the basics for school(Ihope) we have only ever been told it’s Global developmental delay which im assuming will lead to ASD at some point. He has good understanding of language not shr appropriate but he understands slot he will wave and kiss you goodbye etc and he’s very vocal but no understandable words . He knows a few signs but doesn’t really use them. We are also just starting pecs and I’m hoping school in September will bring out the words . Recently he has started to imitate everything his 2 year old sister does so I’m hoping this will lead to imitation of sounds and then words . He has fine motor delays which we have OT in place and he’s under a speech therapist too. We live in the UAE so we hire a shadow teacher who is his 1 to1 in nursery now and will be his 1 to 1 in school in September.He’s a very happy little boy , brilliant sleeper but a terrible eater . Praying 5 is the magic age for him 🙏❤️

@Putdownthecake also thank you for the lovely story of the late talker always gives me hope .

@FinnsMammy your son sounds wonderful and very clever. He will just be taking his time. It will come :) best wishes to you both

Thanks for posting an update. I'm in the depths of despair with my son if I am honest. We are all burnt out with everything and his poor sleep. We both work FT. I've just got him into a specialist for September after a long battle, but he is still non verbal and puts himself in danger and not potty trained. His behaviour and aggression is getting worse,but he doesnt realise he is doing it. Thankfully its just at home at the moment. Definitely has both LD and autism. He talks through an app, but very hit and miss if he cooperates.

He is in a mainstream now, which have been great and he loves going, but long term it isn't the best place. At least the first hurdle of getting the right school is done.

I'm so pleased things have worked out for you OP. I don't have any hope of my son ever talking. He complete regressed too at about 20 months. He used to say words and finish the end of sentences of nursery rhymes and was very tuneful, which is sad. This thread helps though, so thanks for starting it.

@Soukmyfalafel I feel your upset when you write and I was you not so long ago. My son is still not toilet trained either and similar in many ways. I honestly believe if language has previously been there, then it has the capacity to come back. I wonder if your son could be a gestalt language processor. Specialist school will do wonders for your child (well this is my hope), with a fully intense interaction style adopted. His behaviour could be linked to frustration of not being able to communicate? Have you tried pecs? I felt mentally better once I found my tribe. I now know others in similar situations in life to lean on. We joke (probably shouldnt) that we take it in turns for our own meltdowns to help the other person through. It's a very tough journey!

@Putdownthecake hi there please do you have any updates on how ur son is now am in exact same situation as u were😭 a very desperate mama here I would appreciate and update please

@Ela1234 my son started in September mainstream school with a1 to1 he’s almost 5and a half now and still completely non verbal . He’s loving school )my last post in June 2023 he wasn’t potty trained however by July 2023 he was) he has had no toilet accidents in school . He’s smashing his IEPs and making friends and been invited to birthday parties despite his disability. They will surprise us even though he’s still non verbal he’s using signs and starting to use pecs to get his needs met. His teacher adores him so we are very happy where he is at and I was so worried about him starting school but they surprise us. School support has been amazing for him he has come on heaps he has apraxia of speech which is what’s preventing him from speaking right now but he is stating to make progress in SALT so hopefully in time hr will ❤️

@FinnsMammy thank for your replay and am so happy for yours sons progress 🙏❤️

@Putdownthecake hello. I know this is a very old thread but wondered if you had an update. How is your son now? My child is due to start school in August and our story seems very similar to yours.