DS with ASD starting school Sept 2018 - I am feeling overwhelmed

[Hurricane74]

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

LivPotter can I ask what the sort of section F your provisions were please?

Thank you so much. Good job I have you kind of people to speak with or I would be very much up the creek without a paddle!

Liv no mention of speech at all in ours, school have referred him and he will be having speech in school paid for by school I presume they will be taking this from his ehcp funding but they haven't said that so I could be making that up!

Ds's section F is broken down into 6 sub sections. So the first deals with Salt provisions (so things like using reduced language, allowing him extra processing time, using Makaton etc)
second is cognition and learning (using small groups, how to deliver information, making sure he sits near good role models),
social and emotional (behaviour strategies, support during playtime, access to sensory room when needed),
sensory needs. 1 and 2 (breaks, social stories, activities to calm and stimulate)
Self help (toileting, getting dressed etc.

For his EHCP he had assessments from salt and Ed psych and we contributed private reports from his OT and behaviour therapists.

danni I could help with the wording but as I don’t know your ds I couldn’t help you with the content.

We had to accept the draft with no explicit mention of 1:1. If the final version had not provided enough funds for full time support we would have appealed. We had reports from SALT, paed, specialist teacher OT and the Ed Psych. They all specified that he’d need substantial support and an individualised curriculum.

How is everyone doing?

We've had a weird week. Did a parenting course which was surprisingly good. I guess we kind of knew it all but felt good and positive and nice to hear it all in one place delivered in a coherent way.

But DD has had a couple of difficult drop offs. Worst ever this morning I think. Her teacher was off sick and she has her least favourite class today and also an assembly thing she finds a bit stressful so I think it's just maximum anxiety.

On the bright side she requested to wear her new school dress that she previously said felt horrible and I had to take back to the shop, so that's one less voyage to M&S for me ... yay.

It's mad as I know she's happy at school. She's probably having a lovely time by now. But I find it hard to concentrate all day when she's had a tricky start. sigh. Might go and have an early lunch and try to reset myself...

We've had a few difficult days too Light. There's building work at school so a few changes in classrooms and timings and DS's anxiety is building. He's been teary at a couple of pick ups and saying he doesn't want to go in. He seems to have a good time once he's there but we're refocusing on preparing him for school everyday and building his confidence.

Sorry you've had some tough drop offs light. It's really hard not to worry about them even though you know they are fine! Great that your dd has agreed to try the dress.

That sounds stressful sue. I hope he gets some confidence back soon.

We've had a fairly rubbish week, I have flu, dd has tonsillitis and ds has a temperature so he didn't go to school yesterday and I cancelled his therapy today.
If he's not better tomorrow I might have to take him to the gp (one of my most hated tasks with him).

I just bit the bullet and ordered a SEN buggy for when we are having difficult days. It feels like a huge step, not sure why really as we still often use our old buggy (which really can't take his weight anymore). I just know I'm not capable of carrying him on my shoulders for much longer.

Light, I’m glad your parenting course was good and confirmed you’re already parenting dd well! Which course was it?

Sorry that the tricky drop offs are continuing, it must be very upsetting as there’s so little you can do. Great that she’s willing to wear the dress though. Fingers crossed.

Sue I’m sorry you’ve had a difficult few days too. Is the building work a long or short term thing? What techniques are you using to prepare him and build confidence?

liv I hope you’re all on the mend soon, it’s awful when everyone is ill . It sounds like the SEN buggy is a good idea if it’s going to make life easier. They are getting far too heavy now to carry for any length of time, plus, if anything like ds, too wriggly.

Ds has had a cold this week and is still quite snotty. He’s been fine at home but I got called to collect him early on Tuesday as he was flagging and just finding it a bit much. I kept him off Wednesday. Later this morning they have a Remembrance service in the local church so goodness knows how he will find that. I will go along too but my expectations are low...

Good to hear of a good parenting couse Light - who was it run by?

Hope that the difficult drop offs are just a blip Light and Sue. Liv hope that you're all better soon.

I was rather too ambitious yesterday evening and I'm really regretting it now. V weirdly as my son hates sudden loud noises he loves fireworks. Yesterday his cousins' Beavers/Cubs put on a campfire and firework display. He was so over excited and tired after school that I should have just pulled out - I'm certainly not going to win any parenting awards for how I got him changed to go out or when I got him ready for bed. We actually had a lovely time in the middle - at the end of the singing he went up to the leaders and said 'that was great singing'! I was so proud and they were v keen to ensure that he was on the waiting list for Beavers. However, we didn't get home until 9pm and I'm now panicking about how he's going to cope today ..

I hope DS is doing OK this morning dimples. Sounds like such a lovely experience for him, I'm sure it was worth the trauma. At least it's Friday so they get a chance to recharge a bit over the weekend.

DD had another difficult drop off today. Maybe because her teacher is still off? Not sure as everything else went well. I think sometimes she gets in a bit of a run of difficult days (it almost becomes a habit: she's stressed about the thought that she's going to get stressed IYSWIM?) I'm going to try to get there earlier next week so she has more time to settle. I'm a terrible morning person unfortunately. Anyway, she has a play date with her bestie from nursery after school which she is really excited about, plus she seemed really excited about doing music and assembly, and I'm sure as usual she will have been fine within 5 minutes of me leaving.

The course was run by our local authority open and was called "Next Steps". It was multi-disciplinary but the man who led it was an SLT. It was very busy (apparently they usually invite 10 and get about 5, so this time they invited 20 and got 17! Just as many Dads as Mums which I thought was nice).

It was kind of all stuff we knew but I really liked that it was positive (not focusing on "deficits" or diagnostic stuff) and focused a lot on sensory needs and differences. The leader said he was "close to the spectrum" (I identified a lot with him ) - e.g. he refused to have his hair cut until he was 12 because of sensory issues - and he has a sister who is diagnosed autistic so was able to explain some things as she has explained them to him, so it was good to have that perspective. Everything was from a very accepting/supporting/skills building point of view, rather than a medical/treatment point of view.

They did a thing called the "Iceberg" which I thought was helpful. You take a behaviour that is a problem and try to think of all the sensory, social, etc. triggers lying behind it, and then try to think of solutions from that perspective (i.e. how can you alleviate some of the triggers/stressors to get the same benefit without the anxiety/stress/meltdown). It's not rocket science but I thought it was quite a helpful way to think about it, and it's amazing how often writing something down makes it more clear. He emphasised that behaviour never comes from "nowhere", but often autistic kids bottle things up until they are at breaking point (because it's hard to communicate) so you have to be really alert for the signs that stresses are building up. Which I think is true (though not easy to do!)

Hope you are all feeling healthier liv. I can imagine re: the buggy. I think in our daily life everything just feels "normal" and like we're just a family - so doing anything that indicates to yourself that things are different is always a bit sobering. I think that's why I was dreading this course a bit but in the end it was fine. Hopefully once you have the buggy it will just be useful and you'll feel better about it.

dimples the bonfire sounds lovely, even if a bit fraught at either end. We’ve not yet taken ds to see any, usually he’s just slept through them and been oblivious to what it’s all about. This year we got him out of the bath to watch some out of a front window and he loved them. Next year I think we’ll find a small display to try, the huge one in town will be too busy and I’d worry about losing him.

Light I hope dd had a good day in the end and enjoyed her play date. She has the weekend to relax now and then it all starts again doesn’t it.
The course sounds good. I agree that it’s not easy to spot the stressors, I guess that comes with more time and experience.

Ds did brilliantly at the remembrance service, he’s doing so well with these things at the moment. I’m excited as it means he will be fine (hopefully) for the christingle and Christmas service which we’ve never done with him. We’re not religious but I love the Christmassy stuff. His school is CofE but was just so lovely we were willing to accept that as part of the package. Unfortunately he got a bit tired and upset in the afternoon and did a bit of pushing. Hopefully his cold will mostly be over by the time he goes back on Monday.

We had a second session with the new SLT this week and he played with her the whole time again. She’s mostly just trying to build a relationship at the moment and not push him too much. We will see how it goes. OT is going into school to see him on Friday, she’s not seen him since July. Hopefully we can re-start regular sessions in the New Year. I think she will notice a big difference in him.

I hope everyone has a good weekend. I need to start thinking about Christmas. I have done NOTHING yet though ds’s wish list gets longer by the day.

Thanks for your replies not had chance to get back on as ds just had an operation (tonsils & adenoids) he's done so well, day of operation he co-operated which is amazing as a year ago it used to take 3 people to pin him to get his temperature at the drs! He let the nurse do blood pressure and sats, let her put emla cream on and even let them put cannula in once he was numb.. that took a bit of wrestling and pinning him down but they managed it & he took the sedative out of a syringe and swallowed it with no fuss (sedative unbelievably didn't even work wtf) but he did so well.

He didn't have a clue he was having an operation he wouldn't understand what an operation even was but that's the best way because he wasn't scared, he was miserable for the first 24 hours crying and clinging to me but he's been fine at home ever since, it's as though he hasn't even had an operation he's eating as usual and playing and sleeping as usual, no crying or anything it's so bizarre!

He's been such a little ⭐️ just can't believe the difference, 12 months ago he would literally kick and punch and bite the dr and put up such a fight they would have to call for another dr to help and that was just a simple check up, it was so horrible and stressful getting him any medical treatment last year and I genuinely couldn't manage him had to take family with me to appointments to help me with him, so I'm super proud of him!

As for the EHCP my deadline for draft to be returned is 6 days, I haven't sent it back as I've been in hospital so I really need to post it back first class recorded Monday morning and ring ehcp co-ordinator to let her know it's been posted back. Need to change a couple of little things in it that are not accurate but as for the actual sections in the back I'm not impressed as such but I'm just going to accept it with no mention of 1-1 because the funding is for a 1-1 anyway so he has that regardless he has to have 1-1, my friends little boy is non verbal autism & is 6 yrs old and I've checked with her and her ehcp said no 1-1 either (same LA) but when I find out what level of funding he has received if it is not enough for full time 1-1 (including meal times) we will appeal that 100%

Just thinking, you know this past 8-12 weeks my son seems easier to handle, not easy by any means but easier than before! Fingers crossed it continues.

School referred to SALT 2 weeks ago, we have first appointment in 4 weeks, he hasn't had any SALT input for nearly 3 years now so that will be useful and hopefully she will diagnose with a language disorder and not just language delay because his language is very disordered anyone else's child like that my sons speech is very very unusual.

He sounds like he did brilliantly danni! I had to take ds to A&e a couple of weeks ago and it was a complete nightmare! You must be super proud of your ds.
Honestly I know it's not right but if the school are as supportive of your ds as you say they are they will make sure the 1:1 support is in place whether it specifies it in the EHCP or not. Have they not already told you the funding level you are getting? We got told that at draft stage. Definitely appeal if it's not enough.

Hope everyone's dc's are relaxing after what sounds like a fairly stressful week. We kept ds off school on Friday and he's much better today. Really looking forward to having both kids back in school/nursery next week.

Sorry I didn't explain what I meant by his speech being disordered, he just has a diagnosis of speech delay but he hasn't been assessed for 3 years so since 3 years ago obviously things have changed, it's more than a speech delay now, just some examples.

If he's poorly (he doesn't always communicate his poorly but when he does) he will come up to me and say what's up with your ears while pointing in my ears, but he means his own ears, he does that with everything. so say he banged his head he would come up to me and say ouch did you bang your head pointing at my head, I obviously know that he means his own head, but if he said that to anyone that didn't know him they wouldn't understand what he was doing.

Pronouns are reversed so 'you do it' means he wants to do it, can be very confusing.

He speaks as though he is the other person saying it, like he will say his own name then do you want your dinner, which means he wants his dinner.

He is communicating, but in a very odd way and it's been like this about 2 years now.

He can't answer questions or he can but very simple questions like it has to be very very prompted, for example if I know he has played with red paint at school (clue is in the fact he has red nails and red paint on his jumper) I will say what did you do at school today I'm met with a blank response so if I give him lots of prompting with little questions surrounding the answer he will eventually give me a one worded answer such as paint but I have to work very hard to get the answer.

He couldn't tell you his name or age or anything like that, he can answer things he's memorised the answer for but that's about it, you can ask him a question & if he knows the answer he'll say it but change the way you word the question then he wouldn't know even when the answer would be the same, he only knows in the way he learnt it iyswim.

To the passer by they would assume he was an ordinary 4 yr old boy cos he sounds so chatty and his speech is very clear, but spend 5 minutes with him and try speak to him and you know instantly it's all very abnormal.

My mums work friend asked how his autism affects him and her reply was - he can name you every single airline on the planet just by looking at the logo, but he can't tell you what his name is, sums it up perfectly.

There's lots of other examples I could give but you get the idea.

I do hope he learns to speak properly, and have a conversation, but I have every hope. I keep reminding myself he is still only 4 (5 in 2 months.) still very young really.

LivPotter no haven't been told about the funding, I know nothing, I will call Monday morning and ask, his co ordinator has been very vague throughout the whole process but I shall ask.

Thanks

DS had the same issues with reversed pronouns Danni0509. He had fairly hard-core echolailia and still drops lines from adverts into conversation. We've done some fairly intensive SALT to work on it and it's taken about 18 months to crack. One thing that seemed to help with the "you want" was to touch his chest each time and say I want. I feel for you though as I didn't think we'd get past it.

danni what a little superstar your ds was at the hospital. I’m glad he’s recovered and back to his usual self. We’ve had similar moments (though not as extreme) where things have happened that last year, or earlier, would have resulted in a massive tantrum but haven’t now. It’s such a relief and shows how much he’s matured.

My ds also had the same problem with reversed pronouns but it is now resolved - fully I think. Sue’s suggestion is a good one. For a while we were told to go back to using names instead of pronouns so it was clear what he was saying. He just needed a bit more time to get it I think. We also had a lot of echolalia though it has diminished significantly. We still have some complex echolalia (not sure if that’s a real thing but I saw the term on the Faithmummy blog) where he will use learned phrases in the correct context. If you didn’t know where it had come from then you may not recognise it as that but, obviously, I usually know. But alongside that he has lots and lots of his own speech and is improving all the time, as is his overall responsiveness. When I took him to the SALT drop-in in June 2017 he wasn’t asking questions, now he asks lots though now yet why or something like ‘how does that work’ but I know now he will get there. I’ve rambled a lot but my point is, he will progress

Suevide thank you for your reply, I do talk to him as if it's him saying it, it all gets very confusing doesn't it! Haha. So i would say to him when I pass him something 'thank you mummy' or if I know he wants something and I ask him and he puts his hand out to take it I will say 'yes please' & then 'thank you' once I've passed it, or when I knew he had ear infection for example and I knew he was in pain I said 'my ears hurt' and got him to touch his ears whilst I said it. Just modelling exactly what he needs to say.

He is learning everyday I just need to remember he has come so far. His understanding is worlds apart from 18 months ago. He didn't even understand sit down when he was 3.5 yrs, I was so worried as he barely understood a thing I said, but after lots of work literally teaching him step by step instructions and going over it what feels like hundreds of times a day he is slowly getting it, I asked him the other day to bring me a bag of red crisps out the cupboard and his dad some blue crisps and do you know he brought both and went to pass us the opposite colour but looked a bit confused and you could see him thinking about it then he swapped and passed us the correct colour crisps. We do stuff like that all the time testing him, his doing amazing. X*

Openup* my ds uses complex echolalia too, he will remember full sentences word for word and use them months later in a similar or same scenario and you think to yourself hmm de ja vu! I have heard that before and then you remember! I think it's super clever when they do it! Just shows you doesn't it they are not daft they've got it all going on up there. X

Well my ds isn't back at school for another week yet after his surgery, we ventured in the car to Tesco this morning and he's cried and played up the whole time we were out, id dosed him on medicine before we left so had to race around with him in the trolley kicking me. His playing with his trains now while I sit and supervise mumsnet he seems in more pain today but they had warned me this would happen. I'm just pleased it's all over I had sleepless nights about the surgery for ages on the lead up.

How's everyone finding school? Do you think your children are learning? I think my ds is, it will never be at the rate of his peers but ive accepted that, they are working on pencil control & writing his name and he did a letter T the other week. He gets homework to do like phonics letters and he knows all the letters and sounds but hasn't got a clue about blending them to sound out the words we make, but I'll keep trying. X

Openup I had highlighted your name on my last post, not sure what happened.

One quick thing, did it take an absolute age to toilet train?

my ds is still in full time nappies (he wears them for school, they dont mind, his 1-1 changes him when needed) he wears special needs vests from m&s with poppers underneath so none of the other children see his nappy, & tbh my son isn't aware if his peers did know or comment bcos he doesn't understand stuff like that. I've failed to train him for over a year now he's just not ready for it but at some point it's got to be done.

Spent the 6 weeks summer training ready for him to start school but for the life of me couldn't get it done, feel such a failure with it. I've managed to get his dummy & bottle off him years before they needed to go, but only just out of his pushchair (that was & still is brutal! Lol & his still on reigns bcos he's dangerous) i just cannot get him out of nappies.

Paediatrician said don't worry she usually sees children like ds out of nappies around age 6, (he's 5 in jan) it's the one thing I'm having hard time with, he's at gp in a week regarding something else so I will mention it to her then.

Hi, only me again.

I've found out today my son has band 7 funding on his ehcp, she said it starts at band 4 and goes up to band 10.

No idea what that means.

She said that along with the 6k the school already receive for Sen, it would be enough to provide full time 1-1 for him though.

Anyone have any ideas about his band 7 level?

Also they wouldn't change the ehcp wording to 1-1 support, but have changed it from class teacher to class teacher and TA support & Senco support, so had to just agree to finalise with that.

He receives 1-1 from school anyway.

All finalised now and will receive his final ehcp copy shortly.

Thanks

I've done an afternoon of digging on my LA website took me ages to find, I have seen that it equates to £7100 extra funding on level 7, then the £6000 sen budget aswell, so £13100 per year, is that about a 1-1 TA wage for full time hours?

Clueless really. Seems quite a high amount, don't know if that's standard.

Is it similar to your ehcp's? X

Sounds about right. ds gets £15500 which is full time 1:1 and cover over lunch. We're in London, so I'm not sure if that makes a difference.

Ds has £15,200 ish on his EHCP. I don’t know if that’s inclusive or exclusive of the £6,000 SEN funding. His school provides ft support with a few different 1:1’s over the week. We are south but not London.

I don’t know anything about the levels of funding.

Were yorkshire area, I think £13100 sounds enough to me. The school did say he would have support for breaks & lunches when he does starts the full days anyway, I don't want to even imagine him roaming free for 1 hour lunch unsupervised the trouble he would get into

Nursery once had his lunch funding reduced for the 2 lunches he attended and he stole pack lunches sabotaging the other children's food, tipped the jugs of water on the floor, climbed the tables etc etc etc LA early years funding soon gave it back when the nursery manager had kept a diary log of the performances for a week

Thanks for your help ladies, much appreciated.