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 seeking, I didn't realise you'd been in the EHCP process for so long! I know we have a very long way to go still ugh.

Yes you've got the shoe thing! Glad my explanation wasn't too rubbish. Instagram isn't really aimed at special needs stuff but occasionally I see a video and think that it may work for my ds. Lots of videos of how to make slime etc.

I've not heard of Twinkl I'll check it out.

Hi liv, yes we started the process while my son was at his old nursery and then we deferred and the new nursery took over. We had a 16 week delay by the LA (long story) which didn't help. But hopefully things will now speed up. Hope your road through it is as quick and smooth as possible.

It was a really good explanation! Such a great idea, I'm excited to try it.

Aha, yes I've seen the slime ones. There are a billion of them!

Twinkl is great. I pay a subscription and hummed and ha'ed about subscribing (although there's lots on there that is free) as it wasn't cheap, but I use the resources all the time and it goes all the way up to Year 6 I think.

Hi Everyone, good to hear you're all making progress. Welcome open we got a delayed start for DS and it's been good for him. His interaction with peers hasn't come on as much as we'd hoped but he's much happier going to nursery, is speaking more to teachers in class and seems emotionally stronger this year. I can't imagine him going into yr 1 now!

We've used the year to do more intensive SALT and sort an EHCP but our LA has also been v slow. We're wrangling over the draft (so won't be done by primary admissions day next week) as their version is deliberately vague about his 1:1.

We got our first choice school! So pleased. We have a team around the family meeting this month to discuss transition.

Good luck everyone (not sure if whole country finds out today).

Congratulations open
Not sure if we find out today or if they post letter today. Doesn't make any difference to us though. DS will get a place in the school we listed but we are hoping for a place in a unit which is only accessed through the EHCP process so we'll be none the wiser yet.

Thanks for the welcome all.

Are many of your DC in preschools that close over the summer holidays? I’m nervous about the long summer break before school starts. There is a SEND playgroup that we attend which runs over the summer and we are on a waiting list for another, more structured, one. Otherwise I’m going to have to look around and see if there are any other paid things we can book onto. DS is an only child and he needs to continue to have regular interaction with a group of children.

I’m feeling nervous about the impending EHC assessment decision after meeting a mum this morning whose application was rejected, they are having to appeal. She thought their application was a no brainer, as did I.

One of the things I’m concerned about wrt school is eating. DS has a very limited diet and will not eat even preferred foods in a a social setting. He is only in nursery 9-12 so it’s not a problem really but at school it will be. Does anyone have any advice? We are seeing an NHS dietitian but I’m thinking of making an appointment with Jo Cormack. Does anyone have any experience of her or anyone similar?

Ahhhh.... we got our second choice. May make things easier in a weird way (push us more towards the private option)... though it wasn't a bad choice. So hard to decide!

How did everybody else do?

Can't help with the eating concerns I'm afraid open , my DS is a pretty good eater.
My sons will be off through the summer, I don't use childcare for them so it will be a combination of me, DP and my mum.
What was your second choice like lighttripper?
DS has a place at his big brothers school, we only put that school down. Hoping to get the unit but will be this school otherwise. Not sure when we will know if we are successful in getting him in to the unit.

Ah, sorry LightTripper. What was different about your second choice vs first?

It looks like our first choice school will have a larger reception class next year than this year (based on offers anyway) but it still seems a better choice than our local school which we just didn’t think would suit him.

Thanks anyway mama. DS was ok until he turned two and then he stopped eating many foods and has dropped more since. It’s very difficult and means we rarely eat out. If we do he will only eat his regular snacks which are biscuits and rice cakes, he won’t eat even preferred hot food. The only other foods he eats he has at mealtimes on rotation every other day. He refuses to even try anything else.

We got our first choice. Now begins the battle of trying to get him used to the uniform!

Hi Open my ds has a very restricted diet too. No idea how he's going to get on with school food. They have been working very hard on it at Nursery and he now at least sits at the table during lunch, which is massive progress.

Don't worry if you EHC gets rejected you just have to appeal, a lot of LAs turn it down first time to see if they can put people off. IPSEA have a very good failure to assess document on their website which is worth a read anyway in case you need to appeal further down the line.

Sorry you didn't get your first choice lighttripper. Have you heard anymore about your dd's assessment?

Received email from nursery today re ‘graduation’ and ended up crying at work - I’m so not ready for him to start school. Still waiting for the draft EHCP - I’m sure that the postman thinks that I have a thing for him as I sprint for the door when I see him!

dimples am I right in thinking they have six weeks from the meeting to send you the EHCP or am I making that up?
Its been 4 and a half weeks since our meeting so was thinking we'd get something in a week and a half.
Am I right in thinking it won't specify setting on the draft? Such a stressful time isn't it?!

Mamapants it is stressful and I find the time limits v.difficult to follow. I think the whole process is meant to take 20 weeks - the IPSEA timeline says draft to parents week 14 and educational setting consulted week 16 ... In our case though Nursery applied for EHCP in September, LA refused to assess six weeks later then I appealed to tribunal and at end of Jan Council notified me that they were not putting in a defence and agreed to assess. I think the LA in my case seems to have set the clock back to zero weeks - as case worker refers to it having to be in place by end of May.

As far as I am aware the meeting does not count in the statutory time limits - but it could well be your LA's policy?

I think the parents have to propose the educational setting when you return the draft - this element seems odd to me.

Yes I find it very odd that the draft won't include setting, as if DS has to go mainstream then the EHCP will need to be much more robust than if he gets in the unit and would need different considerations in my opinion.
I don't know how the timescales work at all, as we didn't apply for assessment and given a decision whether they were assessing or not. As my son is at a unit at the moment all the children there are given a plan, so we went straight to multidisciplinary meeting. Just trying to work out when we are likely to get a draft as we then only have two weeks to comment.
I find it very hard as I have no idea what is reasonable to expect in it, I really want more speech and language provision than he currently gets but no idea what is realistic.
Glad you are getting an assessment but very frustrating you had to appeal to get it.
In my LA I feel they are always timing everything to end as close to sept as possible so fewer people will appeal.
If it is 16weeks from our meeting we won't get draft until start of July! I do think they told me 6 weeks though but a friend who works for the LA SEN team said the next meeting was end of april and we'd get it after that.
We are feeling hopeful about the unit, as generally parents are trying to get their children in mainstream, so fingers crossed.

I think the rationale is that the plan is meant to be about what the child needs rather than resource led - which makes sense in theory but in practice ...

In terms of the EHCP timeframe I think Ipsea has a good one. The first six weeks are for LA to decide whether or not to assess and then assessment/drafting the plan is about 8/10 weeks so I think that is where we are both probably at ...Nothing in the post today!

Really hoping that you get the unit you want. Did the Council get updated reports from SALT and EP that could be used to help your argument that he needs more SALT?

The draft EHCP arrived today. Unfortunately I won't be able to read it until my boy is in bed as he is being rather challenging today

Hi dimples yes council have had updated report from SALT.
Glad you got the draft, very exciting, hope it includes everything you want it to. Good luck with bedtime. They always seem to know when you want to concentrate on something don't they.

Your premonition was correct Mamapants bedtime is ongoing and I'm sitting outside his room kicking myself for leaving the plan downstairs!

Typical!
Have you had a chance to read it through? How is it?

I think that it's getting there in that the LA are committing the resources but I think that the support is not sufficiently specific and precise. I am attaching an extract - I'm going to push for changes to 'daily' and 'school staff'. I also believe that the costings shouldn't be there but I'm not sure if it matters ...Have you heard any mamapants?

Looks pretty good. Does it tell you how many hours learning support he'd be getting on it? Or does that happen later?
No nothing here yet, only five weeks since the meeting so likely to be another couple of weeks.
Does your plan include any outside therapy/ help?

When I add up all the costs of LSA it equates to FT 1:1 but that is not expressly stated anywhere - that's what I want to change in the plan. He is not getting any outside therapy at the mo as he was discharged by SALT, OT and Physio last year. He has been re-assessed by Physio and OT as part of the assessment but they have just suggested programmes and activities school can do and suggested that school re-refers in the future ...so not great but apparently an OT from a different team has been in touch with school so hopefully they're on the case ...We have a SALT appointment the week after next so that's going to be too late to feed in but actually his speech is one of his areas of strength so I'm not too worried about that

dimples we've had the same issue. Funding for a full time 1:1 agreed but complete refusal to state it in the plan. I'm sure it's unlawful but they've put in writing that they never specify TA provision so a saving that in case we end up at tribunal.

We have a review in Oct so will be pushing for the professional reports to be much more specific about provision as we have lots of vague stuff about individualised programmes but no clarity on frequency or content.

Hi SueVide - I think you are right that it's unlawful but a lot of LA's seem to have unlawful policies. I'm going to quote the Code of Practice in my reply and hope that they amend ...Has your son's EHCP been finalised?

I've quoted IPSEA and had advice from SOSSEN but my LA won't budge so we've settled on a form of words "individual support from an appropriately trained person during structured teaching hours I think all hours in reception are structured by the class teacher but I'm gearing up for it to be a struggle at each review.

I'm so exhausted from dealing with this that I've agreed to finalise it even tho I'm not happy. To be honest DS has been on good form at the moment and it's been the LA causing me grief!