Too autistic for CHUMS not autistic enough for ASD nurse support

[FlemCandango]

FFS. DD year 10 is struggling when at school, emotionally, it is taking a toll on her and us.

She has melt downs regularly needs to leave lessons and needs ritalin to stay focused. She has autism, ADHD and dyspraxia and is a very sensitive and clever nearly 15 yo. I am very proud of her she tries really hard but is a bit lost in this big school, not really connected socially the lock downs have been helpful in some ways as she has settled down with remote learning pretty well. Still has meltdowns at home though, and she needs to study downstairs so we can keep her on schedule.

She was really struggling back in September, had a bit of a crisis and we got some changes agreed and a plan (or so we thought) for this year when she was back in school, for an autism advisory nurse to assess her in school to suggest further strategies. We also self referred to CHUMS for some counselling. CHUMS discharged DD as they said her ASD meant support in school as advised by LA ASD nurse was more appropriate. Today we have been emailed by school to say DD doesn't meet the threshold for a school assessment by ASD nurse. So that leaves us with nothing. I suppose DD has to fall apart before she gets any help! It feels like they are kicking the can along the road.

DD is at a really important time in her schooling she wants to do well and tries really hard. I see the toll it takes on her emotionally and physically she is dreading going back next week. I want to scream at someone but that won't help it is so frustrating.

Have you spoken to your local IASS for advice? It would be good to give them a call & explain the situation. Do you have a local SEND parent carer forum or a MENCAP as they'll be able to advise you on next steps.

cyp.iassnetwork.org.uk/
www.autism.org.uk/
contact.org.uk/
thegirlwiththecurlyhair.co.uk/
www.ipsea.org.uk/
www.specialneedsjungle.com/

This is shocking.

Can OT not come in aswell as Ed psych to assist with support in school?

They're an autism support toolkit for schools that the school should be following. Does she have any support at all in school?

Thank you Caramel really helpful links. I have contacted local SENDIASS and we will challenge the school/ ASD nurse but tonight I feel tired and frustrated with it all.

DD is on SEN register, has permission to step out of lessons if she needs to, and out of PE in particular as they have acknowledged they can't meet her needs in group PE. This has only been in place since December. She has a key worker meeting fortnightly, she can go to learning support at break times. That is it really. She is quiet generally and not disruptive, though she is regularly tearful and gets very distressed in test situations. Because she is an able student academically this seems to give them the opportunity to say she is fine. But at what cost to her well being!?

We asked for OT and other assessments in school keep being told she doesn't meet the threshold.

www.ipsea.org.uk/judicial-review

Does she have an EHCP?

councilfordisabledchildren.org.uk/help-resources/resources/disabled-children-legal-handbook-3rd-edition

This has chapters you can download, it details what you're entitled to. Worth reading so you know what to ask for & the local authority can't fob you off.

Nope - ironically the ASD nurse support/ assessment was offered to us as a sop because the school denied DD needs an EHCP yet another threshold not met.

@FlemCandango, schools can be really poor at supporting those that are academically able and mask in the school environment. Been there got the T shirt with my Ds, unfortunately. It's been incredibly detrimental to his well being and he now has significant mental health difficulties.

Ds's old school told me he would not get an EHCP and it was a waste of time applying for one. They even told the LA he didn't need one. Thankfully the LA didn't agree with them and he's now at a different school with an EHCP.

I would do a parental application for an EHCNA. Ds was already 16 when I did his, so it's definitely not too late!

Your DD's school should have a SEN coordinator. Ask for a meeting and ask what the care plan is for her and see if they school can push for extra help?

[quote Punxsutawney]@FlemCandango, schools can be really poor at supporting those that are academically able and mask in the school environment. Been there got the T shirt with my Ds, unfortunately. It's been incredibly detrimental to his well being and he now has significant mental health difficulties.

Ds's old school told me he would not get an EHCP and it was a waste of time applying for one. They even told the LA he didn't need one. Thankfully the LA didn't agree with them and he's now at a different school with an EHCP.

I would do a parental application for an EHCNA. Ds was already 16 when I did his, so it's definitely not too late![/quote]
Thank you Punxsutawney I am sorry your DS struggled but I am glad he is in the right setting now! I do feel really let down by the school. You start really questioning yourself it is like being gaslight by the school. Bloody annoying.

Flem it's awful, I totally understand all your concerns. Ds's school were so unsupportive and he was bullied terribly by other students, they completely let him down. Even when he left and I complained about what had happened to him. They blamed us.

We still have a long way to go with Ds but we are finally going in the right direction, even if it's just small steps at the moment.

Have a look on the special needs boards on here, I found the advice I got on Mumsnet so helpful.

Well just sent DD off to school. Full blown tears and snot meltdown for last hour. The poor thing - she is so distressed and panicked then she is distressed about turning up to school with her eyes all red. She has pe today a massive trigger and when I said use your time out card if you can't deal with pe today, she replied "I don't want them to think I am just using it to get out of lessons" more tears. I get into ridiculous circular arguments with her when she is in this state. She is only making it to school because dad is driving her and big brother in y12 is coming in with her. He doesn't have a lesson this morning but is happy to work in the library for 4 hours so he can come in with her. So it is a real team effort! Her brother is a star and so is DD.

But no you are right school, she doesn't need an EHCP, or an ASD nurse to assess the situation all is hunky fucking dory.

Btw I have contacted SENDIASS and they will help us start the EHCP process. I think we are going to have to go down that route.

You can request an EHC assessment yourselves as parents - the school does not have to initiate this. Once you do this, the local authority will send an advice request to the school and the school has a statutory duty to provide this. Sorry your daughter is struggling so much - I think schools are very difficult places for students with an ASD.

Sanitizer - we have decided to go ahead with the request for an EHCP. We just have so many voices at her school saying it is not needed it is hard to believe we will get anywhere.

Could you ask for her to continue to homeschool but with the school’s support and work set by teachers? My son is clever, dyspraxic and, I definitely think autistic too. I had to home Ed him from the ages of 5-13. He’s in a private school with small classes now and that has helped a lot. He does get very stressed from time to time but the teachers are lovely. I give him 1-2 ‘mental health’ days per term where he just lies in bed all day. This helps him a lot too.

@FlemCandango

Hi does your daughter have an EHCP in place if not please apply

Sorry I missed this post please speak to IPSEA and find operation diversity on Facebook there is lots of help for parents going though the EHCP process.

Switch off from the negative EHCP noise from school and remember this is the narrative from the local authority and 95% of EHCP’s go through even if you have to appeal.

I am going to start filling out the EHCP forms today. The next thing I am going to do right now is get properly dressed and listen to a nice pod cast and do something else for a bit other than wait for a call from the school. I will also make a cake later to reward the kids for getting through their first full day back in school in 2021.

Our older Ds in y12 is also autistic, he has aced his GCSEs although he felt cheated by not sitting an exam. He is doing 4 Alevels and wants to go to a Russell group uni to do pure maths - the school love him. He is the archetypal so called HF autistic little professor (even in primary school). Focused and pedantic and prone to correcting his teachers but doesn't give two shits what the other kids think. But offer him a plate of pasta and sauce for dinner or ask him to go to the shop and buy a pint of milk on his own and he will fall apart. It is simply that most of DS issues don't affect his ability to go to school and pass exams!

The Candango children are a weird and wonderful bunch.

Thank you to the OP and contributors for all the info in this thread - DD is 14 with ASD that often prevents her attending. School are reluctant to go down the ECHP route as they say all they usually ask for or get is 1:1 support, which they know my DD wouldn't accept as she doesn't think she needs any help. I didn't where to look next but this thread has given me some pointers.

@Wotsitsarecheesy you should go for it and do a parental application! I'm surprised the school said that about 1:1s as normally even with an EHCP it is notoriously difficult to get a 1:1 because it's a relatively expensive intervention. The whole point of an EHCP is that it addresses the specific needs of an individual child rather than blanket interventions. I've seen EHCPs with alternative therapies such as equine therapy and even a full time ABA therapist at home provision (not saying I agree with ABA btw, just seen it on an EHCP).

@Wotsitsarecheesy oh and where to look next: IPSEA, your local SENDIASS and SOS!SEN are great starting points

My lo had someone in from SEND (late in primary school) to observe and advise. She was absolutely brilliant. The school didn't do any of what she suggested but she was absolutely brilliant. x

@Wotsitsarecheesy

Thank you to the OP and contributors for all the info in this thread - DD is 14 with ASD that often prevents her attending. School are reluctant to go down the ECHP route as they say all they usually ask for or get is 1:1 support, which they know my DD wouldn't accept as she doesn't think she needs any help. I didn't where to look next but this thread has given me some pointers.

*@Wotsitsarecheesy* you can request an EHCP referral yourself, you don't have to wait for the school to initiate it. Plus it's not up to the school whether your dd gets it or not. If her needs are complex enough to warrant an EHCP, then it's upto the LA to assess the evidence & decide whether to issue one or not.

Get in touch with your local SEND IASS for support on starting the EHCP process.

www.gov.uk/children-with-special-educational-needs/extra-SEN-help