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EHCP/school advice please? Stress stress stress!

(16 Posts)
Bearfrills Tue 19-Mar-19 14:47:56

Sorry but this is going to be long! I posted this originally in SN Chat, not realising there was an SN education board

DS is 9yo and in his first year of middle school (year 5). He has ASD, hypermobility, and some degree of social-emotional development delay.

His intellectual function is variable. Verbal comprehension is on the 77th centile whereas his Visual Spatial awareness, Fluid Reasoning, and Processing Speed are on the 23rd, 27th, and 18th centiles. His high verbal skills mean people often overestimate his other cognitive abilities and don't realise that he needs support with the other areas. His neurodevelopment team made several recommendations on what support he needs including specific teaching and named key worker support with social interactions, supervision due to social naivety and associated vulnerability, a named staff member responsible for checking in with him, work around emotional literacy, and so on.

School were on board with applying for an EHCP and said they were starting to gather evidence. They have now said that as he is not behind with his work they are now not applying for an EHCP and a Pupil Passport letting staff know his difficulties and how to support him will suffice.


We had a meeting with the SENCO yesterday and his Pupil Passport has the wrong photograph on it, the photograph is to identify him to staff so they can see which child the profile applies to. Totally different child on the front of his which is a small thing but infuriating all the same.

His profile said he has ASD, hypermobility, and ADHD. He does not have ADHD and there was no mention of his sensory processing problems or social-emotional developmental delay.

It lists his difficulties as:
- fidgets
- difficult to concentrate
- doesn't seek help
- poor handwriting

It says he needs:
- a wobble cushion, thera-band on his chair legs, and writing slope
- thera-putty in registration only (he fiddles with it otherwise)
- time to process
- one task at a time
- to be asked if he needs help
- not to make him rewrite his work

To help himself he needs to:
- use his equipment appropriately
- ask for help when needs it

There are recommendations in his diagnosis report that aren't mentioned and school don't appear to have even read it as they weren't aware of them when I mentioned them and said they were "sure" there is a copy of it "somewhere". There should be two copies as the clinic sent them one and I handed in a photocopy to school reception.

We've had some incidents since he started in September.

- they have a snack trolley at break time and he was buying 3+ items every morning then his lunch not even an hour later. He cannot self-regulate so will eat until he vomits. School told him he could only have one item which of course didn't work and eventually assigned one of the playground staff to supervise the snack trolley and discretely prevent him from buying more than one item. She retired three weeks ago and, in their own words, they forgot (FFS) to tell her replacement that part of her job role is to watch him at break time so of course with no one watching him he immediately went back to binging at break time. They've assured me now that "all staff are aware he needs to be watched".

- we have had many, many instances of him misinterpreting social interactions and coming home to say that so-and-so has been really mean to him when so-and-so did no such thing as well as the opposite where such-and-such is his best friend but it turns out that such-and-such is actually being foul towards him.

- they went a residential trip of three days where we were assured he would be supervised. He came home in the same clothes he left in, down to his underwear and socks, caked in mud. Turns out he hadn't gotten changed once the whole time he was there, including sleeping in his dirty clothes, because he wasn't sure how to re-pack his bag so decided to simply leave it packed and with no one prompting him to wash/change/brush his teeth he just didn't.

- He won't tolerate crossover between home and school so homework is a trial. Whole weekends can be given over to screaming and meltdowns over doing homework, he'll tear up books, cry, meltdown, and so on. School are aware of this and that he will do what he can, usually we set a time limit and whatever he's completed is what we hand in. They get weekly maths homework and also four week long 'topic' projects where they have to complete a minimum of four tasks self-chosen from a list of twelve. The latest one was holiday themed and he managed to complete one and a half tasks. School gave him a demerit for not completing maths homework despite knowing all this.

- last week he brushed a girl's hair away from his face in the lunch line, not understanding personal space and not touching people. She slapped him for "pulling" her hair and then got her boyfriend to come over and slap him twice more. He didn't tell staff, despite it being hard enough to leave a hand-shaped bruise on the side of his head and when a staff member checked in with him later that day (they ask twice a day if he's okay due to him not seeking help) he said he was fine. As soon as he came home he exploded and then we got the details from him of what had happened.

- when instructions are given to the whole class he doesn't realise they apply to him unless he's specifically named so he doesn't realise he needs to write things in his homework diary like things needed on specific days (e.g., bring in a peach for home economics). Staff have said they will write it down for him but it's hit and miss as they forget or they don't realise they need to do it

- he regularly loses kit and equipment, his PE kit went missing for three weeks after he left it somewhere in school and couldn't remember where. Ditto water bottles, jumpers, his locker key, etc. They turn up in the strangest of places, for example his swimming kit turned up on the top of a six foot high locker bank which is an unlikely place for him to have left it and gives me the sneaking suspicion that other kids might be deliberately taking and hiding his things. I can't prove it so haven't said anything about it but the circumstances are tripping my radar.

- he has no friends and is desperate for some but can't initiate appropriate interactions. He's chosen the one kid who absolutely cannot stand him and has decided that they will be friends, he just has to figure out how to make it happen so he follows this kid around and the more he follows the kid around the more annoyed this kid gets and ends up snapping at him so then they end up in trouble. School have told then to stay away from each other which doesn't work as DS doesn't comprehend it and thinks if they end up as friends then he's allowed near him anyway, so school got them to sign a contract saying they'll stay away from each other with consequences set out for breaking it (demerits, detention, etc).

DH and I think he needs:

- specific teaching around social interactions and appropriate behaviours

- specific teaching around emotional literacy

- a dedicated TA to prompt him as needed, supervise his interactions and model appropriate behaviours for him, help him stay on task, ensure he's not left vulnerable, etc. Also potentially to scribe for him if needed. His writing is very poor and school are working with him at the moment on quality over quantity, that they'd rather they can have a paragraph that's readable than several pages of scrawl but that's not going to fly from next year when SATs kicks in and I know the year six English teacher is very strict and not accomodating of SEN.

- supervision on the yard and at break times, supervision to stop him binging

- non-essential homework not given to him (namely the four week long projects) and essential homework (e.g., maths) to be completed in school

- to be allowed to leave lessons two minutes early as he has equipment to carry (wobble cushion, chair bands, writing slope) from that classroom and then set up again in the next classroom. When the corridors are busy he invariably drops his kit and is then late for his next lesson plus time spent then setting it all up again. Either that or help navigating the corridors and setting up his kit.

If you're still reading then thank you.

I know I need to email school and say I'm not happy with how the meeting went and that we feel he does need the EHCP to make sure his needs are met but right now I am exhausted, I'm sick of feeling like everything is a bloody fight.

To complicate it further, the SENCO is going on maternity leave soon and is trying to get her files up to date and sorted before she does. It's giving me the sneaking suspicion that her team will be caretaking the files while she is away rather than there being a specific named SENCO and that any issues will be met with a "we will have to wait until Mrs XXXXXX comes back..."

Does anyone have any pointers or advice? Have I missed anything?

grasspigeons Tue 19-Mar-19 17:50:23

you can apply for an ehcp needs assessment without the school - there is advice on the IPSEA and SOSSEN and SPecial needs jungle.

It would be nice for the school to support it but its not necessary.

Bearfrills Tue 19-Mar-19 17:53:15

Do I have to tell them I disagree with their decision and I'm going to apply anyway?

Legofriday Tue 19-Mar-19 18:02:23

God, poor you and poor him. It's so frustrating.

Do you agree with the stuff in the pupil passport, or do you need it to be more like the neuro team's advice?

It depends what the head is like, but I'd be very tempted to ask for a meeting with the head, the senco and his class teacher, and ask them what they're going to do about each of the neuro team's recommendations? And when you're going to review that. And how are they going to manage it while the senco is off? And tell them you'll be applying for an EHCP yourself.

grasspigeons Tue 19-Mar-19 18:06:28

I don't believe you do have to tell them, but I probably would.

Bearfrills Tue 19-Mar-19 19:38:22

I agree with the pupil passport in principle but it's a bit too vague and doesn't really address any of the underlying issues behind his behaviours and it doesn't address any of the social/emotional/communication problems that he has. There's no progression in it either, aside from control measures such as the equipment he has they don't say how they're going to help him build on his existing skills.

I also have no idea what his targets were, whether he met them, or what his new targets are because they didn't have the information available and we weren't asked what we would like to be included in his targets.

I've emailed them:

I didn't get chance to raise it yesterday but have the recommended next steps in XXX's diagnostic report from the neurodevelopment team been implemented? Particularly the ones relating to specific teaching around emotional literacy and social skills.

I also wanted to add to the section on information that staff need to know:

- XXX's high verbal ability makes it easy to overestimate his overall cognitive abilities. His verbal skills are high but his Visual Spatial awareness, Fluid Reasoning, and Processing Speed are all below average (23rd, 27th, and 18th centiles respectively).

- his social naivety confers a degree of vulnerability that staff need to be aware of. Not seeking help goes beyond school work, he also would not seek help when injured, unwell, upset, or hurt (for example, he did not tell anyone at school that he had been repeatedly slapped despite being asked later that day if he was okay). This puts him at high risk of all forms of abuse and coercive control, as per the report

- when setting any homework staff should be aware that he does not tolerate crossover between home and school (it works both ways and for all he was happy to see us yesterday he was highly anxious about it as it was home crossing over into school and had a meltdown after he got home) so homework might not be returned at all or might be returned only partially completed

Having discussed it further with his dad, we still want to make an application for an EHCP as we believe this is the best way to ensure his needs are met both now and in the future.

I'm expecting my fob off phone call sometime tomorrow where I'll be reminded that his school work is fine and they don't think he needs any of those additional things. It's great he's doing well in maths and appears happy (keyword being "appears") but that doesn't stop him having anxiety attacks about school when he gets home and running away on a morning so that he doesn't have to go.

Ieatmypeaswithhoney Tue 19-Mar-19 20:29:01

Sorry to divert from the question, but how did you get the detailed assessments done re processing abilities etc?

Bearfrills Tue 19-Mar-19 20:34:50

He was referred to a neurodevelopment service by CYPS and they tested it as part of their assessment. They put the name of the particular test in their letter, I'm not home at the moment but I'll post it when I get back.

Ieatmypeaswithhoney Wed 20-Mar-19 06:40:27

Thanks! We had a diagnosis of ASD about 4 years ago and a subsequent diagnosis of ADHD for which we now have medication, but nothing like the level of detailed assessment that you seem to have had and I am not sure how to get that or even what to ask / push for!

Bearfrills Wed 20-Mar-19 17:33:09

It was a WISC-V UK test. Sorry it took me a while, we had bedtime madness last night.

No reply from school today and DS has come home in a foul mood. He was playing with a ball on the yard and someone deliberately (he says, whether it was or not...) kicked it up the other end of the yard and then another child at that end of the yard took it off him. When he asked for it back they told him no and then ignored him. The same two children were then asking him why he's so lonely and kept singing that "lonely, I'm so lonely" sing at him.

Do I tell school this? I don't want to be that parent who runs to them over every little thing but at the same time it shows he's struggling socially so I want evidence that school are aware he's struggling.

Ieatmypeaswithhoney Thu 21-Mar-19 00:11:36

Thank you!!

I would be inclined to mention that to the school as it sounds like bullying. If it has bothered him and it's focussed on a social interaction issue they should be aware.

KathleenW15 Sat 23-Mar-19 20:21:29

My son sounds very similar to you son, ASD, hyper mobility etc. My son is academically behind in maths and writing, he is an exceeding reader however!

We are currently in the process of EHCP, the a school applied supported strongly by us, but they only applied after 3years of stage 2 SEN support as the local authority told them all of the hoops they 'apparently' had to jump many cycles of plan, teach, review, Ed psych report, has to be academically 2years behind, spending over £6k a year.. blah blah blah....

Anyway they applied and he got turned down for assessment, I was utterly shocked! there was bucket loads of evidence! So I went on some IPSEA training about SEN/law/EHC's and was shocked to find out schools/heads rarely know the threshold for EHC assessment and LA's make it sound nearly impossible. The legal test is however very low and they could have applied years ago without implementing any of these things.

To apply for an assessment: Your child MAY have SEN, Your child MAY need and EHCP that's the legal test.

After ours got refused, I appealed (IPSEA advise 90% of appeals get over turned- because councils implement their own rules and not the law), ours didn't even make it beyond submitting the appeal paperwork, the council called up and said they changed their minds and they will assess him.

Go on IPSEA website, its brilliant, they also have a great support line (after a few painful attempts to get an appointment I got one!). I would go to the school armed with the legal test information and information from IPSEA. It's a stressful process, one that brings no joy when you have a child that already brings you so many unknowns, but I live in the hope that the stress will be worth the end result!

Oh and I don't work for IPSEA, but SOSSEN and Special needs jungle....well they were like a jungle for me!

Bearfrills Fri 05-Apr-19 19:25:42

I wanted to come back and update what's happening.

I complained to the school who asked for an opportunity to put things right before it gets to the complaint stage. I had a meeting with someone from the SLT who took a list of my concerns and said that she's taking ownership of this while it's still at the informal stage. She's going to arrange to get his targets to me and for there to be a meeting with the SENCO team, SLT, and myself to resolve it all and find a way forward.

Today we had an appointment with CYPS and she was baffled about why they're not implementing any of the recommendations made by the neurodevelopment team. She's going to be writing to them to remind them that the recommendations are not optional and need to be put in place as well as making some recommendations of her own. She says he needs ongoing support from the SEND team which school will need to fund so they may well rethink applying for the EHCP, she's also going to write that he needs one in place.

Meanwhile I got a copy of his Pupil Passport for review which now has no photograph on it at all, still says he has ADHD, says he has no problems with communication or interaction, and has various errors and omissions. I've gone through it with a pen, corrected it all, and returned it to school for them to put right.

So now I need to wait until school goes back after Easter to see if SLT and CYPS follow through on what they've said.

Ellie56 Fri 05-Apr-19 23:29:30

Hi @Bearfrills I've posted on your other thread.

Bearfrills Sun 07-Apr-19 11:18:42

I saw, thank you. That is all really useful and I think you're right about not waiting on SLT. I've been promised the moon on a stick many times before now and so far none of them have actually delivered on it.

Hawkmoth Sun 07-Apr-19 11:32:39

I'm another with a very similar DS, although he does have an ADHD dx.

We have moved schools.

DS now has 32.5 hours 1 to 1 support in his EHCP after our first application was turned down and the old school never got their shit together to apply. The school actually understands what impact the social skills differences have on him, and how important it is for consistency across all interventions... and not stopping them because he's ok!

The school should have lots of paperwork on him, including assess, plan, do, review cycles. Make sure they are up to date, ask to see them, get all meetings minuted and start writing letters instead of phone calls. The more paperwork the better.

It's really hard when school aren't on board.

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