Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

@carriebradshawwithlessshoes apparently she has decided that the baby sensory garden is where she wants to be. So she just let's herself through the gates to get there and gets annoyed if they say no.

I suspect she is bored of nursery which reassures me that she might be ok in reception.

Thank you all for your really kind responses, feeling in a slightly better state now but still not 100%. I’ve passed the current school issues onto DH for now while I start the hunt for a school for next year (have to say I’ve had better communication from Oxfordshire LA and we don’t even move till next summer!)

@openupmyeagereyes we’ve emailed our MP at every stage of complaining. No response.

@dimples76 I honestly have no idea if DN has a reviewing officer - I’ll ask. Though he has yet another new social worker who’s toddled off to go see if the payments we should have been getting towards DN can be backdated 😐 the director of social services has also never responded. We’ve escalated the complaint we made a few months ago regarding DS to the social care ombudsman, and included a big about DN in there too as we felt the complaints process given the lack of overall response would be utterly pointless and just further delay support.

@MoominMamasTribe he does have an EHCP and we had an emergency review in March when it become clear he just couldn’t cope in mainstream. So we’ve now gotten an incredibly overdue review, a draft with no named placement … so lots to complain about really. Thank you - I’ll pop over to the SEN board and lurk around there and see what advice they can give over there 😊

@Ahna65 In terms of support for me, and DH too to be honest, there’s very little. Our families are still very much in denial and largely refuse to discuss it. MIL is of the belief DS is perfectly fine and just needs to get on with things snd ‘be more resilient’ - significant brain damage doesn’t seem to register with her. Friends have on the whole pulled away too, lots of talk of ‘oh we’re here if you need anything’ but then saying things like they feel awkward around DS, don’t want to bring the kids round to see him - it’s been a bit shit really. We need a much better support network but unfortunately there’s no groups or anything around here. I’m hoping if we get our preferred school in county we can look at having a birthday party for DS at our local SEN adventure park and try to get to know other parents there.

A massive plus though - DS HAS STARTED TO USE SOME WORDS. Admittedly, they are Lampost, Pinecone and Postbox but he’s using them within context and I’m bloody delighted 😁

@Jaberwockky that's so great re the words, must be a great feeling!!!

Sorry to hear re support. We are lucky with MIL but that's it really. I have basically no friends here and find it really difficult to meet people. The SEN adventure park sounds like a good idea!

Jaberwockky that’s fantastic! 👏🏻👏🏻👏🏻

Sorry your MP has been no help, still try director of children’s services if you haven’t.

Ds was obsessed with telegraph poles when he was two-ish. That definitely was not typical behaviour - major clue.

Jabberwocky that's brilliant news re the speech but sad to read that the LA is still letting you down.

I received a response to my complaint from the LA today - a copy of a decision letter dated 13th May stating that the LA intends to amend the EHCP but no details of the amendments. I didn't receive the letter and I am rather sceptical - on the previous occasions when I chased up the decision why did no-one refer me to it? Any way according to the case law cited on IPSEA website the LA are still in breach of statutory duty as the amendments must also be notified within 4 weeks of AR and we're now 10 weeks on....Another complaint to write.

dimples any news yet?

How has everyone’s week been? Have you all heard class details for next year? Pretty good here, swimming lesson and soft play. We had a couple of later 5am starts but since back to 4ish despite the exercise 😬 Going to go to the cinema this weekend.

Open my complaint seems to have paid off and I have now received the amended draft EHCP. But because it is in draft no school is named and no update has been provided re consultation. In addition they are trying to remove OT (against professional advice) and which I went to Tribunal last year to secure. So, I am feeling very frustrated

In better news DS had his 'moving up' day yesterday and came home in a positive mood.

Today we have been to a very loud crowded local annual event which DS has a love-hate relationship with but always wants to go. It's a big part of my childhood and heritage too so although I am always anxious about DS I risk it. We had a great time and just made it home before the heavens opened.

V frustrating dimples. Glad the event went well though. Awaiting rain here, it’s very close today.

Good morning everybody, I’m just joining this (but a very long term mumsnetter under various names).

My 6 year old is autistic, mainstream school, and moving up to year 2 in September.

He tends to mask well in school, but then can be aggressive at home. It’s 8am here and so far he has headbutted me, hit me with his tablet, tried to scratch my arms.

I’m a bit lost to be honest, I don’t know how to discipline him? With my NT 8 year old he’d lose screen time for anything like that, but DS will only eat meals if he’s allowed his tablet.

@carriebradshawwithlessshoes I have been having very, very similar thoughts with DS who is now not far off secondary school. I have looked a lot of schools and have found to my surprise that there are NONE at all that support kids like my DS, who is bright academically but also needs support, and would not cope with MS. I’m quite worried about what to do.

So far he’s been in a specialist setting where he’s in a small class, very high ratio of adults to kids and a lot of this has been great. He took many years before toilet trained, has physical difficulties and speech delay. However all along I’ve had to supplement at home, teaching him what the school misses which has been mainly speech therapy and academic work. Now he is above average at maths, below average english. Most of his class struggle and are at least 2 years behind, but can also cope better than DS sometimes.

DSs behaviour has started to get worse in school, where he says he’s bored and he says lessons are ‘too slow’. Increasingly he comes home and basically they’ve been baking all day or on a trip to a playground. Which don’t get me wrong, is good for DS but I want him to be able to do a GCSE in science or learn to play the drums, or do drama if he wants, and at this rate he will have no chance.

I’ve looked at several autism specialist schools for ‘average or above’ academic learning, but in reality they all seem to have kids who have spent 2 or more years out of education or be behind, so all the learning is geared to that. They say it’s tailored for those who want to progress at peer rate, but I think in reality that means having a different workbook in a class with kids who are not working at the same level - and DS won’t learn like that. He needs a lot of input.

I actually worry a lot about all our kids, with established schools struggling with increased numbers and newer schools seeming to have very little experience and run commercially. They all have sensory rooms, play and a well meaning attitude, but giving our kids real learning opportunities? Not so much.

Seriously considering EOTAS.

@dimples76 that sounds really great! So pleased you had a good day.

@PimmsandCucumbers yes I could write a lot of that too. I’m interested and sorry if you have said before, re toileting and speech, do you feel his school helped with these? Certainly re speech SSs claim to be the experts but haven’t moved DS forward at all which is the most depressing thing this year. When did your DS speak, what did you do outside school? Why couldn’t they incorporate this in school? Re the toilet when was he trained, do you think his physical issues were the reason he struggled? Sorry for questions, pm me if it’s detracting from the general thread.

Toileting is doing my head in (again) so much so I may start a new thread as I don’t feel many relate on here. We have moved on loads in the last few months in that he will, if prompted, go to the toilet. Those prompts happen by me or an adult generally after a time passage (I know he should be able to wait at least an hour) or me observing him doing a ‘toilet dance’ (the latter tells me he does have some sensation he needs to go). We can go weeks with no accidents on this basis but it’s not foolproof as if I get the timing of my prompts wrong he will just have an accident and carry on like nothing has happened. School obviously have out toilet pecs and all sorts of things but he just will not indicate when he needs to go.

classic example was last week when he was playing in the garden. I was in the kitchen watching him out of the window thinking ironically how nicely he was playing, appropriately, not doing anything that one time would have triggered a dash like eating something in the garden. He saw me watching and smiled. Then I realised he had pood, but he was just continuing to play. Obviously I had got my prompts wrong BUT even in the absence of language he could have come into the kitchen, run up to the back door, run to the window, changed his behaviour in some way, anything! But he didn’t. Not that he needed to go or that he had been!

this doesn’t happen often but makes me think he still doesn’t ‘get it’, so how do I get him to ‘get it??!’. When we talk about schools, I think behaviour like this would absolutely rule him out of anywhere ‘able’ even if he shows ability with things like numbers and reading. Able schools just don’t want to be dealing with this do they, this is why I feel we have to crack it but just don’t know how to.

otherwise alls fine… same class next year, diff teacher. Not a bad weekend but with DS it rarely is (aside from the shrieking episodes). It’s never really about what he is doing that drives me mad, it’s more about what he isn’t and just feeling like time is passing and I don’t know what to do to move him forward with these things (speech falls in that category too).

Hi everyone

Ah @carriebradshawwithlessshoes that reminded me - is the shrieking a bit better? Haven't heard in a while. @dimples76 glad you had a good outing!

@carriebradshawwithlessshoes There is a free "masterclass" via insta this week I think from school run autism mum (or some similar insta) which is focused on non verbal children and potty training. I'm going to join but I think when they are not at home most of the time it has to be led by the school really, so I'm a bit sceptical about the masterclass but intrigued what she suggests. I am not in a hurry at all for DD1 but think DD2 is nearly there so I'm wondering whether to try at the same time and see how it goes.

We have been trying a bit more consistently with pictos and it seems to be sticking a bit. DD brought me the picto for a particular fruit she wanted yesterday which honestly brought tears to my eyes !! It feels like progress. Last night she randomly slept 11 hours which was amazing but almost certaintly a one off!

Schooling, no advice but I do understand how you feel. We are years behind but on Friday I had a message from the school showing her doing a shape sorter and how clever it was. I was a bit like, she's been doing that for literally more than 2 years. I can see that in an age where curriculum is more important that would become more pronounced.

@Ahna65 DD does sound quite communicative with the pecs. Are there lots of them on a board, attached with Velcro? dS never really was interested for a variety of reasons..

1. he tends to only be bothered about what he physically can see so wouldn’t randomly think oh I would like a grape then search out a grape pec. If the grapes are on the work surface he would help himself or bring a tin to me if he can’t open but never with a pec. If it’s an empty work surface he’s happy to go without. Sometimes I wonder if he even relates the pec to the actual thing (tbf they can look quite different!)
2. scanning a full sheet of pecs then using fine motor to pull it off hard Velcro is too much work for him. Another thing we have failed with!

Pimmsandcucumber I can see that is a worry.

Carrie we are still having major toileting headaches. Like yours my DS can go for long periods without accidents but then this weekend he pooed in his pants/pj bottoms x3. Once he has had an accident he never tells me, he will just sit in soiled/wet clothes and lie til his blue in the face and then make the clean up into a massive drama. I would say probably 75% of the time DS goes to the toilet without any prompting, 15% when prompted and then 10% accidents. However, a lot of the time when I prompt him he goes into a rage. Like you I get frustrated with myself if I forget to prompt (or occasionally choose not to, to keep the peace). We are seeing a playtherapist from continence service at the moment. She hasn't really helped yet to deal with my main cause of frustration which is DS refusing to go and sit on the toilet when I tell him to. At school he hasn't had an accident in the last 4 years but he never poos there, barely drinks anything at school and is not relaxed. All of DS's accidents currently occur when he is flopping on the sofa- I try and use movement breaks to help him reconnect with his body but again he is very resistant.

@carriebradshawwithlessshoes yep
some of them look nothing like the same thing. And our board has a combination of photos and clip art type stuff which I’m sure is not ideal but the SALT insists it doesn’t matter. But I think w photos it can stop them from generalising and the other way round - w clip art can’t always spot it

atm it’s just fruit so she doesn’t have too much to choose from, and only uses it for blueberries really as they are her fave. She then brings my hand to the blueberries on the board more than pointing herself. If they were on the work surface 100% she’d just eat them (which seems fair enough tbh).

Hi all, nice weekend overall here. Took DH out to a themepark that DS likes for DH's early birthday celebrations. Watched the grand prix and now I have a few days off alone, really looked forward to it, and now don't know what to do with myself! I've done some reading this morning, a bit of cleaning, watched some TV. It feels so.odd not to be dashing about everywhere!!

We all have snivelly colds too bah. Still weeks and weeks till we go on holiday. Anyone going anywhere nice?

Palma Moomin! Anyone been? It’s a very short flight, short transfer, on the beach, plenty of 🍷and eateries, I’m not sure why we haven’t been before?! Enjoy your time off!!

I had some good news today. I saw the EP and she went through ds’ cognitive tests with me. He mostly scored in the average range with above average for visual spatial and below average for processing speed. All in all I’m very happy because it shows that he’s capable and hopefully they will know better how to support him going forward. I’m also amazed that he sat with her and did the tests over 2 days for nearly an hour each time. She said the teacher he will have next year is amazing which is great news, and that he is in exactly the right provision based on his results - you may remember that I worried it might be too academic for him. It still might turn out to be if he won’t engage but we’ll see. She did WISC and WIAT tests.

Enjoy your time off Moomin

That's great news Open. That must have given you a boost. I wanted the EP to do those tests on DS last year but instead they just had a chat - school and I literally learnt nothing from the report.

Yes it did dimples

You should still push for a proper assessment if you want it, absolutely rubbish re. the last one.

Not that we got ours through the LA, this is via the school.

@carriebradshawwithlessshoes I have a lot of similarities, and don’t mind being asked at all! I started writing but I went on for a long time, so I think I’ll try and shorten this.

DS still will almost never go to the toilet unless I prompt him. We actually had a ‘routine’ now with toilet ‘times’ because without those, he won’t go, and he can have a meltdown if I ‘prompt’ him. Yet he also will ‘forget’ to follow this routine unless I’m 100% on top of it. Once I forgot to keep an eye and realised he’d gone most of the day without going to the toilet. It can’t be good for him! A couple of times though recently, he’s gone when it wasn’t even ‘time’ and I just thought, fantastic!

I think with DS it’s complex, he doesn’t like things being out of control and he doesn’t like any changing body sensations. He will resist them or deny them, partly through fear. For example a small itch and he will scratch until it bleeds. He will never say he’s ill. He also had chronic constipation and was on meds for this for years.

School - an experienced specialist teacher in his first school couldn’t wait to toilet train DS, even though I thought he wasn’t ready even at age 5. The teacher tried, relying heavily on a social story and little else. It failed and put off DS. The next teacher said she’d need to have a psychologist supervise, but there was no psychologist available. I did it myself with a potty and it took a year of patience and gradually.

Speech - it’s crazy the specialist school did not help and still don’t really, despite it being one of the number one needs on his individual plan. They try, but it’s unfocused and sporadic. I tried 3 SLTs, privately, first 2 couldn’t even engage and just said ‘try pecs’ (which didn’t work for us). So I gathered all the advice, read all the books, and just did it myself using Hanen and all kinds of ‘bits’ of other ways, like pairing language with things, letting DS lead, non verbal play etc. It was a lot of work and sometimes I meet SLTs or others who say that DS’s language would have just ‘come naturally’ - well not sure about that!

Eventually got an SLT who was great, 3 years ago and I asked her to go into the school with some great tailored games to help DS. The teacher again was really nice, but just didn’t really do a lot of them consistently. DSs language is now really good, but I still have to say that the biggest improvement recently was home schooling in the pandemic, he seemed to relax enough to talk and learn more.

@openupmyeagereyes that’s really great! Visual skills are very useful, and processing speed can be helped a bit apparently. DS also did WISC and WIAT - so good he could sit through them all that’s quite some concentrating there. So useful to know these.

@MoominMamasTribe a few days off alone sounds perfect! We are all taking on more than most, it’s a lot on our shoulders, time off is great!

@dimples76 yes same here, DS hates going to the toilet at school or drinking, they are linked. We had so much to deal with that I waited some years before having to go into school and saying we have to deal with this, and they weren’t that happy! DS also goes into a rage if I have to tell him to go at home. Routine helps to an extent, but not always! It’s quite exhausting really.

@Ahna65 the fruit pics - sounds lovely those first bits of communication! I remember when DS said ‘co’ once looking at the cookies, I just never thought we’d get there so he got as many as he wanted I think that time!