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

992 replies

Hurricane74 · 07/11/2017 14:48

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.

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LightTripper · 26/07/2018 13:47

Just wanted to pop on and say Hi and welcome to the thread. Can't add anything useful on EHCPs as we aren't there (yet at least) but it's a great group here: very supportive and increasing amounts of experience!

danni0509 · 26/07/2018 13:50

Thank you LightTripper

livpotter · 26/07/2018 17:04

Hi danni.

It sounds like it's been really frustrating for you! It's so annoying been told to wait the whole time when you really need to be pushing everything. You would've thought that they would want to make it easier for parents not harder.

It sounds like you have more than enough evidence for an assessment. The legal bar for getting an EHCP assessment is that your child 'may have SEN and May need and EHCP', both of which sound true.

I would second Open's advice about IPSEA. They have an advice hotline, where you can book a phone call with a trained volunteer and they are brilliant. Also Sossen produce good booklets on the EHCP process.

The good thing is once they decide to assess things do tend to move a bit quicker.

Do you know if the school he's going to has good Sen support? There should be a page on their website which show what support they can offer without an EHCP. You should also have a 'local offer' page on your Local authority website which can point you in the direction of more support.

dimples76 · 26/07/2018 22:39

Hi Danni

I hope that the LA agrees to assess for EHCP asap and that you can get one in place.

Unfortunately my experience has been that my LA did not follow the law - they refused to assess but reversed that decision when I appealed and my son has an EHCP now. As well as the resources others have mentioned I found and EHCP parents Facebook group helpful. My son also has GDD (like you I think that will change to learning disabilities) I have got so fed up with the line you mentioned from SALT that speech/motor skills/self care etc is 'in line with other areas of development' - that doesn't mean that they wouldn't benefit from interventions. I am chasing a SALT report from an appointment at the start of May.

openupmyeagereyes · 06/08/2018 21:21

dimples have you received your SALT report yet?

How is the summer going for everyone?

We are away on holiday at the moment. U.K. - we’ve yet to brave going abroad since ds was born. He’s doing well. He always loves staying somewhere new, thankfully that’s not an issue for us at the moment, I know that sort of change is a massive issue for some dc. We’ve only planned one thing a day with plenty of time just relaxing at the holiday house. He’s managed outings pretty well though often an hour and a half is enough for him and then he wants to leave. We’ve anticipated this and set the expectation bar low so it’s not an issue - we’ve learned from past experience! We’ve had some tantrums around sharing equipment and wanting to go in areas he’s not allowed but that’s no different to home. So far, so good.

We had a response from our EHCP case worker (this has just reminded me I need to respond to her email!) and they are putting through most of our requested changes. She also said that the panel had approved full time support which is excellent. Once this is done I think we’ll apply for DLA.

dimples76 · 06/08/2018 22:38

Great news re the EHCP Open! You must be psychic - I just remembered today that I need to chase the SALT report (3rd time of chasing).

We met the TA who will be my son's main 1:1 on the last day of term and she was so lovely which made me feel a lot better. As the weeks go by though I can feel my anxiety ramping up.

We've had a couple of short breaks (in the UK). My boy tends to be great when we're away but when we return home all the anxiety seems to leak out.

He had a hearing test last week which showed (as unfortunately I expected) that glue ear has returned (he had grommets put in last year but they have fallen out) and his hearing is impaired.

openupmyeagereyes · 07/08/2018 05:39

That’s fab news about the TA, such a relief. I can feel my anxiety ramping up too. I’m so worried about him getting out of the school by himself (this happened at nursery once so these fears are far from groundless). I have relayed these fears to all concerned but still worry that complacency and human error may lead to something awful.

Sorry to hear about your ds’s grommets. Does this mean an overnight stay to replace them or are they day surgery now? Neither option easy with an ASD child, I know.

Yes we are very pleased about the EHCP but we have a couple of issues outstanding. I responded to her email of Friday only for her out of office to say she’s away until the 14th, something she didn’t mention. They are, for some reason, resisting putting into the wording of the plan that he will receive dedicated 1:1 support because she said it’s ‘for the school to decide how it spends the money’. It may just be semantics but that doesn’t seem specific enough. Surely that money has to be spent on my ds or does that go without saying?

LightTripper · 07/08/2018 16:54

Glad to hear about the TA and EHCP and glad your holidays went/are going well open and dimples.

All well here. DD's behaviour went a bit haywire late last week which I think was because she was doing a ballet summer school thing and it had a performance every day. She said she really enjoyed the class (they do a bit of dance but also crafts etc.) - but she got really anxious about the performance at the end of each day's session: only managed to do it on one day and got really upset about not doing it the first two days (the last day she didn't want to do it but at least didn't get upset about not doing it!) It's funny she can sometimes do it and sometimes not. But anyway, the whole thing was clearly taking quite a lot out of her! We had a fairly quiet weekend doing stuff as a family and I think she has recharged a bit now.

We haven't been away yet. We are doing a couple of UK trips in late August, and then trying to plan a foreign holiday for half term (with an NCT friend the same age... may be a terrible idea but they are going to be in the same class and they have been getting on increasingly well having previously been quite adversarial, so fingers crossed it may be OK! Increasingly tricky when you love the parents but your DC don't get on brilliantly...)

livpotter · 07/08/2018 18:30

Great about the EHCP open. I think that's a pretty standard line about the school deciding where the money goes. The money can only be spent on your ds but the school decides how it's distributed to achieve the provision in section F (or at least that's how I understand it).

Great about the TA too dimples.

So impressed with your dd doing ballet club light!

I'm currently doing a load of freelance work so both kids are in nursery lots for the whole of August. I think it's taking it's toll a bit on my ds. He slept from 5.30pm till 7.30am on Saturday last week and he's been napping at nursery, which he hasn't done for a good year and a half!

dimples76 · 07/08/2018 19:15

Open I think that, that EHCP issue is a common one and mine still stops short of saying FT 1:1. One of the issues that they sometimes raise is that they want the child to do some small group work where the TA would be working with 3 /4 children rather than just the child - I suppose that they could then be accused of not delivering the plan. I don't think it is fully for the school to decide where the money is spent as the professional team have agreed what support is needed and the school need to provide the relevant support.

Light I'm v impressed by the ballet school too - I have been thinking of options for next summer hols as my Mum has offered to help but I don't want to put too much pressure on her (she has a lot of caring responsibilities). I don't think my son could cope with any activity camps but maybe next year ...

LightTripper · 07/08/2018 23:15

It's the same teachers as a regular class she goes to, so I think that helps, plus a few kids from her nursery were there. On the downside it was a huge group (about 25 with 3 teachers) so I was a bit surprised she managed so well. We just wanted something to break up the holidays a bit. I was also looking at a drama club thing but we thought it might be a bit much this year, maybe next as you say, especially if I can find a session some kids from her class are going to so it's not all strangers.

openupmyeagereyes · 17/08/2018 21:58

Thanks for the info everyone. I think we have finalised the EHCP today after two drafts. It’s a relief to get it done, on to DLA application next I think.

Light how fabulous that your dd did so well, I think one performance for her first time is pretty good going.

Ds can’t do anything like that at the moment because he won’t/can’t follow adult led instruction long enough! Hopefully in the future that will change.

He’s much more settled this summer compared to last year. On Wednesday his friend from nursery came to play for the first time and it went really well. This little boy is a year younger than ds so will be at nursery another year but hopefully their friendship can continue. Next week we’re meeting up with the boy that he got friendly with at the structured playgroup. This boy also has asd so could be an important friend for him I think. I hope that it goes well, for him and me Smile. I’m having to go out of my comfort zone a bit by asking their mothers if they’d like to get together.

AllAboutTheStuff · 17/08/2018 22:08

My ds started school last September, he was about the same as your son. He had been at the school since 2 though so they were all very aware of him and the TA had worked with him before.

He settled in better than we expected, much better than he had in the nursery room. He has now pretty much caught up except for socially.

He still struggles with things but all the staff know him well and know what works for him. He had lots of input from portage and salt as well.

I remember being so frightened this time last year about how it would turn out. I’m now worrying about how he will get on in year 1, it never ends!

The mainstream school he goes to is fantastic for children with SN though, they do have a separate unit for children if they need it but so far ds hasn’t

openupmyeagereyes · 18/08/2018 08:08

Thanks for your post AllAboutTheStuff, it’s reassuring to hear from someone who’s been in our position and to know that things worked out better than you expected. I hope the transition to year 1 goes smoothly for your ds.

openupmyeagereyes · 18/08/2018 08:14

@AllAboutTheStuff I know all children are different but what would you say are your key bits of advice or lessons learned? What do you think helped your ds the most in the last year?

AllAboutTheStuff · 18/08/2018 12:24

I think the main thing was something that’s out of our control, really really good staff and senco. He likes structure and routine so they keep to that as much as possible. They also use PECS and make sure if there are going to be changes in the running of the classroom that the PECS are up to date and he knows about it when he goes in. They’ve worked a lot on getting him to realise when things are getting to much for him and he is now at a point where he takes himself off for a few minutes before it becomes an issue. He wouldn’t have been able to do that at the beginning of the year though, he would scream and throw things

We have regular meetings with the school and they often ask my opinion on things that are going to happen and how I think the best way for them to handle things would be. We are really lucky with the way school communicate with us

He can be very demand avoidant too so how the school communicate with him is very important too

SALT were going into school regularly up until last Christmas , mainly to support him and the school in social communication and interaction with the other children, he was seeing salt for 3 years

His portage worker has been going in to support with his challenging behaviour and difficulties with transitioning between activities. So quite a lot of it has been down to how fantastic the support is

AllAboutTheStuff · 18/08/2018 12:27

I would say though that if school want to try things that you really don’t think will work for your dc tell them, we had a few incidences towards the end of nursery /beginning of reception where I didn’t think what they wanted to do would work but I let them try and it wasn’t a good idea

openupmyeagereyes · 18/08/2018 12:49

Did he have an EHCP in place before starting reception?

Our area doesn’t offer portage, it seems that many still do.

AllAboutTheStuff · 18/08/2018 15:37

No, school had put extra support in place themselves and I’d spoken with the school and the paediatrician about applying for an ehcp in September, it was the one thing the school seemed to drag their feet with. As it happens as things are now he doesn’t need one, that could change at any time though so I do sometimes wish I’d known more about ehcps and applied for one myself while he was in nursery

danni0509 · 18/08/2018 18:48

*AllAbout
*
I'm pleased your son is doing well, you said he has all about caught up barring socially, but how much has he caught up? Did he have a big development delay?

Thanks x

AllAboutTheStuff · 19/08/2018 00:31

Yes huge developmental delay, I can’t remember exactly without getting all the paper work out but at the end of nursery when he was 4.5 he was around 2.5 years delayed, more in some things and he’d come on quite a lot from the previous year . He stared at almost 3 being assessed at around 11-14 months.

He started talking around 3 but he didn’t really start catching up until after xmas this year just before he turned 5. We knew from about 3.5 when his speech started coming along that he was really good with numbers

He didn’t start trying to read until January this year and he turned 5 at the beginning of Feb. He’s now on level 7 but doesn’t even struggle with that. He’s difficult for them to assess though as he won’t always cooperate

He can also write now but refused to pick up a pencil until March time, they used to do mark making in sand with a stick because he wouldn’t draw or write with pens/pencils.

He does have a fantastic memory though, he memorised all the letters of the alphabet before he even attempted to read.

He came out of pull-ups in the day the month before he turned 5

He was dx just after he turned 2 and it was an easy process for us, took about 4 months and by that point we had had hearing yeast, specialist salt , portage and two peads appointments

When he was dx he had no verbal or non verbal communication, didn’t share interests, so didn’t bring us things to look at etc. Lacked eye contact, didn’t sleep for more than a few hours a night. Was increadably stimmy, spun round in circles under lights, flapped, stiffened and squealed when excited. Spent most of his time lining up cars on the windowsill because it was at a good level for him to watch the wheels go round. Head butted the floor, ran at windowsills head first when upset, bit and scratched us and himself when upset

Was very sensitive to noise, we couldn’t take him anywhere for years, parks, holidays, buses. Even taking him for a walk in the pushchair was awful because he couldn’t stand the cars, noise of lawn mowers, the wind in his hair. Couldn’t cope with too many people around him

Obviously all children are different and not every child will take so well to school, unfortunately not every child will have the same support from the school and outside agencies that we have had, which is awful

But I do remember being where you all are now and how anxious and frightened I was , so I just wanted to put this out there

If someone had said to me a year ago , two years ago that we would have come this far I wouldn’t have believed them. Actually I’ve bedn on mn 10 years and lots of rookie told me that it gets easier as they grow and I didn’t believe them

We still have struggles, at home and at school though, but I know the school work hard to support him, that’s probably the biggest thing. I trust them totally , it took me a long time to find a ms school that I was happy with.

AllAboutTheStuff · 19/08/2018 00:34

Excuse the spelling, I’ve had my nails done 😂

livpotter · 19/08/2018 08:28

Thank you allabout. It's really nice to hear a positive school story. I hope ours is as supportive!

danni0509 · 19/08/2018 09:40

AllAbout

That's really exciting to read, thanks so much for taking your time to let us know Thanks

I'm excited because my son sounds the same, recently left nursery at 4.5, functioning 2 and a half years his age, so more like a 2 yr old, he starts reception in 2 weeks, part time only for the first 6 months,

This time last year he was more like a 12 month old so he has come on massively in the past 12 months!!

He is still in nappies, and I was worried he would always be & that he would never learn to read or write so you've given me hope!!

Thank you Smile

AllAboutTheStuff · 19/08/2018 12:31

Yes we expected him to be in nappies still but it just suddenly seemed to click. We watched the YouTube videos poo goes to poo land and wee goes to wee land a lot! I don’t know if they helped but he enjoyed watching them and the annoying songs 😀