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.

Hi Mama I'm glad you got the diagnosis. It sounds like things are moving forward.

Our EHCP assessments started this week, so it nice to finally have things moving along. We had a very kind and sympathetic EP so hopefully she'll write a fair report.
Otherwise when're going through a fairly low anxiety patch which is nice, not sure how long it will last for this time though.
I went on a very good communications and visual aids course last week so I'm hoping to put some of it into practice at home.

How do you feel now you have the diagnosis Mama? Is it a big relief?

I have all the reports from my boy's EHCP assessment and we have a multi-agency meeting on Wednesday. I am feeling rather anxious about it and hope that I don't let him down. Based on the EP's report it seems clear that he needs a 1:1 all/most of the day so hopefully that should mean we get the EHCP ...

My son has recently started gymnastics and I'm really pleased how confident he has been going into the class on his own and following instructions. His motor skills are weak but he tries his hardest to copy the teacher. I felt v proud watching him this morning

Hi mama glad you got the diagnosis. Hope you're feeling ok. For me, when DS was diagnosed it was a mixture of relief but also some shock, even though I knew, so I know it can be a hard time. Great news on the ABA consultation. We have started ours now and I'm also really pleased with our consultant.

liv your course sounds great! Low anxiety times are such a period of relief aren't they? Long may it last! Good luck with the assessments.

dimples ahh that's really lovely to hear! My DS goes to football and likewise he finds some of the physical stuff hard but he works really hard to join in (copying what others are doing when he doesn't understand the instructions). It's quite humbling isn't it to see how well our kiddies can do and how tenacious they can be. I often have a lump in my throat watching DS so your post made me smile x

Glad you've made it to diagnosis mama. Hope you're ok. We've had the call to say we've reached the top of the queue for the diagnosis clinic. I've been putting off calling them back as frankly I'm scared and not sure I'm ready for the diagnosis but I think it's time to put my big girl pants on.

Went to an EHCP advice session this week and it looks like our LA's draft is a bit rubbish and needs lots of edits. So much for giving up booze for lent.

That's lovely dimples. Good luck with the multidisciplinary meeting.

Yes seeking definitely a relief, always a gamble as to how long it lasts!

I hope you can get your appointment Sue. I found the ados a relief and a shock in equal measures. I got so nervous before it, which seems silly now as there was no way they weren't going to diagnose him.

We went to the trampoline park this morning which was a huge success, so think we'll definitely go again.

Hi everyone, sorry for the silence from me. We have a new puppy and life has become even more chaotic - I didn’t think that was possible! It’s good to hear how you are all getting on. Good luck on Wednesday Dimples. I was very nervous before our meeting but it went a lot better than I expected. Trampolining sounds great Livpotter. I must try that.

Our latest is that we have a final EHCP which names DS’s Primary School. After not getting a place in the school with an autism unit we have gone for a local school with a good reputation for SN. It’s a bigger school than I would like but they seem positive and I am doing my best not to worry! It’s still a good few months away though so lots of time for transition planning etc.

Thanks all. Its a bit of a weird feeling getting the diagnosis. Its what we were expecting and believed. Spent some time worrying they'd say it wasn't. And yet I think a small part of my brain was clinging to the ridiculous idea they might turn round and say he was just slow to talk after all!
The school sounds good hurricane
Interesting hearing you all talk about sport classes. My DS would love gymnastics but am pretty sure he wouldn't manage to listen and wait etc. He's nearly old enough for the local leisure centres swimming class and am wondering whether to try him in the normal group session or look into what's available in terms of 1-1 or disability sessions. Not sure.

Livpotter, my boy loves trampoline parks - I think he’s in sensory heaven!

Mamapants, my son was going to group swimming classes but he was not really getting that much out of them so I thought that 1:1 classes might be good. He had one 1:1 session but the teacher thought it was too much for him. We now go to parent-child group classes with Swimtime and these have worked out really well. Today we were actually the only ones who showed up for the class so he had an individual class. Bit depressingly the teacher said that his motor skills in the pool were at a 2 year old level (he’ll be 5 in June).

The multi disciplinary meeting went really well and they are going to issue an EHCP -I'm pretty happy with the draft, draft EHCP I saw so feeling v relieved. The HT, SENCO and Reception teacher were lovely. I managed to keep my emotions in check until his nursery manager said at the end that she just wanted to say after all the discussion of his difficulties what an adorable boy he is and what a hole he will leave when he moves on to school. His nursery 1:1 looked at me and we both cried.

Really pleased for you dimples and what a lovely thing for the nursery teacher to say. Our nursery 1:1 is wonderful and it makes such a difference. I'm sure there'll be tears when DS moves on.

That's so lovely Dimples. It's great they're going to give you the EHCP.

Wow Hurricane you are brave getting a puppy! Our dog is getting on a bit, my DH mentioned getting a puppy but I totally couldn't handle it at he moment!

Thank you. I am feeling so relieved tonight - I'm hoping for the first good night's sleep in a long while!

My son was asking for us to get a dog at bedtime - no chance! I'm trying to persuade him that a cat would be better ...

Great news dimples
Our IDP meeting went well as well I think. Was pleased with content of what would be going to panel and it's all clearly recommending a place at the unit which is what we are wanting. Local HT was very supportive as well but was in agreement that the unit would suit him better.

That’s great news mamapants - fingers crossed we are all moving in the right direction!

Hurricane74

Were you asked to name your preferred school? And if you were, did you ask for the school with the autism unit?

Hi Ellie56, yes we requested the school with the autism unit as part of the ehcp process. The school came out to visit DS at preschool (and a number of other children who also wanted a place there) but said they didn’t feel he would settle well there as there were a couple of noisy boisterous kids in the unit and DS as social anxiety and sensitivity to noise.

That's a shame hurricane that the unit wouldn't be the right fit.
We have a first OT appointment next month. No idea what to expect. I keep hoping at least some of these appointments will be on one of DPs days with the kids, but no they are all without fail on my days. Typical.
Hope everyone is doing OK.
Anyone heard more about their EHCP, whatever stage you are at.
We are waiting for draft should be getting it in about two or three weeks I think.

Hi

We're also waiting for draft EHCP. Apparently Physio report (lack of) is delaying its issue but they have promised to get it to the Council by Friday ...

We have been re-referred to SALT and OT who both discharged my boy last Summer ...not sure what will come from that the SENCO at the school really pushed for it.

Mamapants I found his first OT appointment really useful and then I was sent on a 'Sensory Smart' parenting course which was also good. Then having acknowledged that he had significant difficulties with gross and fine motor skills and sensory processing difficulties he was discharged. I'm hoping that they will give advice re appropriate targets for EHCP and strategies for school - in the draft, draft EHCP there is a blank row for motor skills outcomes to be set by Ot/physio .... Feels like we're ever so slowly getting there.

At the moment my boy's behaviour is really challenging. I think that there has been a lot of talk about school at nursery and he's unsettled so I think I understand what's causing it but I feel v drained.

Hi mamapants ugh it's a full time job getting kids to all the appointments! Great that you are getting to see the OT though. I agree with dimples the 'sensory smart' training course was good.

Dimples sorry you are having challenging behaviour at the moment. If it makes you feel any better my ds flooded all the toilets at his nursery yesterday!

We're still in the assessment process, all reports need to be in by May 2nd. Funnily enough everyone on the LA side has been really efficient, our private OT however is being a bit of a pain. I've been nagging them for about a month and a half now to do a progress report (it can't be that difficult!). I have no issue with the sessions they do with Ds and he's really progressed because of it but getting them to do the report is driving me nuts.

My ds's keyworker was talking about writing a transition plan for transferring to school. Has anyone done this yet?

Hello all! I've been quiet too. All fine with us, but poorly kids so very tired

Frustratingly still haven't had our ADOS assessment (which we were told would be in March). We are chasing them but nobody we've spoken to so far seems to know what the plan is or where we are... seems vanishingly unlikely now that we will find out before we get our school allocation in a couple of weeks and have to make a decision about state vs private... ahhh... it doesn't really matter I suppose. She is who she is. I was just hoping that the report would contain some searing insight that would help us choose and be confident in our choice!

Ah well... if our state school allocation is terrible it will at least make the decision easy, and if it's good the decision will be hard but a good position to be in, IYSWIM. I'm sure it won't feel like that at the time though!

Hello, I’ve been lurking on the thread and wondered if I could join you all? I have a DS(4) starting school in September who was diagnosed with ASD at the end of last year. We’ve applied for an EHC assessment and should hear back on that within the next two weeks.

I am very nervous about the transition to school and how he will cope, not only with reception but the subsequent move to year 1 also. His EYFS tracker has him at least 18 months behind and it seems like we’re setting him up to fail. He is very verbal but behind in his social communication and very immature for his age in many areas. I have considered applying to defer him but think the school maybe more experienced and better placed to help him than his nursery/preschool. We’ve applied to a smaller, undersubscribed, lovely ms school in the village next to us and I think we hear next Monday.

How frustrating Lighttripper I hope they get back to you soon. I still don't feel confident in my choice I guess it's going to be a case of try and see.

Hi Openup I keep being asked by the nursery when my ds is leaving. School felt like a very distant thing up until recently! I think transitioning is going to be the hardest thing for my ds as well as his minimal speech. I'm getting very nervous about the whole thing.

Hello all,

Sorry for the radio silence. I have been thinking of you all with the impending school allocations.

We finally heard that my DS will be getting an EHCP but the draft is with the LA and we won't hear anything before school places are allocated (on Monday I think?). We have also now found an out of borough school that we really like so we are going to have to see whether that will work out or not (am thinking not), so all is still up in the air.

Liv, I also getting nervous about September (very nervous!). It is coming around so quickly and it's hard not to think of all the things that my DS will find difficult. He is at the local pre-school which is our first choice. They do a transition plan and it involves lots of trips over to Reception, done in a way where DS does not realise that it is for any particular reason IYSWIM. I think it's to familiarise him without it being too stressful. I will find out what else is involved.

Hi Dimples lots of challenging behaviour here too. Nothing can come to an end with my DS (eg play dates or visits to see friends) and no amount of preparation, count downs, visual schedules etc make any difference. He has PDA traits so we find ourselves doing a dance about not outright saying "no" to him without saying yes if that makes sense. Lots of "hmm I'm not sure if we can do that, we'll see" rather than a straight no. Seems to help at avoiding total disaster but it is very wearing!

Hi Mama we are waiting for a draft too. Appointments are always on my days too! I feel like I spend my life going to appointments.

Hurricane, Eli, Sue hope you are all well.

Sorry if I have forgotten anyone.

DS is still eating with his hands! I am trying not to panic. He is getting better at getting dressed (still needs lots of help), so there has been some progress I guess, but does anyone have any idea about how you teach which shoe goes on which foot? He will happily walk around with his shoes on the wrong feet!

Hello light, it is so difficult choosing schools. I can't believe that we find out which school next week and we are still undecided!!

Hi open. We deferred my DS's start to school and I still don't feel like he is ready. I don't think that I ever will! Your preferred school sounds lovely. All the schools around here are huge (3 and 4 form entry) which leaves me petrified.

Hi Seeking that's great they're going to give you an EHCP.

Have you tried using sand timers? Amazon do different coloured ones for different lengths of time, so very visual. We've started using them to help ds cope with the end of bathtime and so far it seems to be working.

Also I saw a video on instagram the other day where a person cut a sticker in half and put a half in each shoe so that when you put the shoes next to each other it makes a whole sticker. Probably didn't explain that very well! I haven't tried it but was thinking of doing it.

Hi liv thanks for your message.

Yes, we're so relieved about the EHCP especially as it's taken over a year to get to this point. I'm sure the draft itself will be a battle but we're over the first hurdle. Sorry to hear about your OT that must be so frustrating.

I haven't tried sand timers but I will do thank you! Glad to hear they're working for you.

Ah what a brilliant idea! I understand what you mean, so DS would like the shoes up so the stickers make one picture? Nursery have managed to teach him the Montessori way of putting your coat on (where you lay it on the ground, arms in, and fling it over your head) which I never thought he would get (I made no progress with it) so although it may take a while like that did, maybe the stickers could work. Thank you!

Is instagram a goood resource for SN stuff? I never think to look there. Still trying to navigate around Pinterest which had loads but I don't find very user friendly (I'm sure it's just me). I joined twinkl which has a lot of good stuff on there, and some good SN specific stuff, and even I can use it!