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advise needed on what i should be doing
  • mrscoco
    Posts: 190
    After a tough week with daughters ocd and pda merging together and seeing my daughters mental health really suffer. We are thinking of not making her continue with school, it has become apparent that school has done this to her. I cant believe we even got to year 9 to be honest, because when she started secondary school i knew in my heart of hearts it wasnt going to be the right environment for her, however our senco was the one that managed to get a quick diagnoses for her, so that is something I am quite grateful for. All the times it was so difficult and she was crying in the car, i just kept pushing and pushing her to go and eventually because she found the mornings hard, the school made adjustments for her and let her go to learning support instead of tutor group. For the whole of this year she has been to learning support at lunch too because she just to hide from everybody and not be on 'display' and she started to refuse to eat in front of anyone at school too. while she did have some better times, with some friend groups etc, it never lasted and she always ended up being the one who was pushed out of groups and on her own. This last year since she is different to when she was in year 7 - she described the daily anxiety of having jelly legs the whole time in lessons, having a rumbling stomach which also gives her more anxiety as she can hardly eat when she is at school, having no friends and feeling really lonely. So I dont want her to go to school anymore, but she doesnt have an EHCP which I am now going to start the process to get. What should i be doing? shall I just make the school aware that she CANT come in and ask them to send work home - she wants to take gcses but I want to cut what she is supposed to do right down to a smaller amount - i dont have the first clue what to do, other than to talk to school, but i dont know how they will take it. It feels really odd having made this descision im a bit nervous how its going to go, but one things for sure, if i keep sending her she is just going to get worse and worse
  • Holly59
    Posts: 2,586

    mrscoco said:

    After a tough week with daughters ocd and pda merging together and seeing my daughters mental health really suffer. We are thinking of not making her continue with school, it has become apparent that school has done this to her. I cant believe we even got to year 9 to be honest, because when she started secondary school i knew in my heart of hearts it wasnt going to be the right environment for her, however our senco was the one that managed to get a quick diagnoses for her, so that is something I am quite grateful for. All the times it was so difficult and she was crying in the car, i just kept pushing and pushing her to go and eventually because she found the mornings hard, the school made adjustments for her and let her go to learning support instead of tutor group. For the whole of this year she has been to learning support at lunch too because she just to hide from everybody and not be on 'display' and she started to refuse to eat in front of anyone at school too. while she did have some better times, with some friend groups etc, it never lasted and she always ended up being the one who was pushed out of groups and on her own. This last year since she is different to when she was in year 7 - she described the daily anxiety of having jelly legs the whole time in lessons, having a rumbling stomach which also gives her more anxiety as she can hardly eat when she is at school, having no friends and feeling really lonely. So I dont want her to go to school anymore, but she doesnt have an EHCP which I am now going to start the process to get. What should i be doing? shall I just make the school aware that she CANT come in and ask them to send work home - she wants to take gcses but I want to cut what she is supposed to do right down to a smaller amount - i dont have the first clue what to do, other than to talk to school, but i dont know how they will take it. It feels really odd having made this descision im a bit nervous how its going to go, but one things for sure, if i keep sending her she is just going to get worse and worse



    Hi,

    She is still entitled to an education . I would personally ask to speak to the Inclusion Officer and see what she suggests . Ask for an emergency MAC meeting .

    There are home schooling PDA sites and they will be a mine of information should you decide to go that route .

    https://www.facebook.com/groups/pda.home.ed/

    Would certainly check out all options first . Get a letter from your GP explains about anxiety and School refusal.

    Not sure how you stand on the benefits side if she is out of school . Check that out as well .

    Pat xx
  • You can apply for an EHCP yourself. It's best to do it rather than school as if your first application fails you will have right to appeal - unlike the school. Also if you go for home ed, you can use the funds at home to pay for tuition. Think about doing an IPSEA foundation law course. Not very expensive £65 or so - it paid me back as with the knowledge I succeeded in getting my son an EHCP with &15k funding attached - this is for a child academically average or above who we were told by school wouldn't qualify for any help!!

    Step 1 - organise referrals for areas of difficulty e.g. oT/handwriting, self care etc and SALT for advice for the school on social skills. See if the SALT will do observations at school for you and write to advise the school on how to support. You wNt the salt to advise on pragmatics and social interactions with peers - not adults! I'd suggest they should have at least Circle of Friends in place if they haven't already, plus other things. Ask these professionals to write advice for her school on what to do. Also that they support the need for an EHCP. If you have a CAMHS referral or paediatric referral ion, get them to write similar things too. Ask them to cover support for self esteem and pastoral care for early warning on mental health risks. Think about what you wNt the RJVP to help with and ask the professionals to give an opinion on that in their reports. If they miss things out or get things wrong ask them to correct and re-issue. You may have to wait a while to get these going. Some services will allow you to self refer. Others need your gp. Avoid taking your child with you for the first appointment or part-session so they don't have to hear about their problems- it will destroy them slowly. They only need to know some bits as it becomes necessary. Sometimes you have to fight for professionals to not talk in front of the kids :(

    Step 2 - get IPSEA's sample EHC request letter and start padding it out. State your child's school, year and any diagnosis. How long have they been on the Sen register. I put in a list of all the professionals that knew my son's case. Put down where they are based and their correspondence addresses.

    Step 3 - download the SEN COP and have a read. Look up the "4 areas of need" and think about what your child struggles with. ASD is basically an SEN in its own right so you can say things like - rigid thinking communication difficulties associated with ASD; delay in social and emotional abilities; dyslexia, dyspraxia, dyscalcula, dysgraphia etc etc

    Step 4 - you need to assemble evidence to support your claims of SEN. Hopefully this should come from the NHS referrals you had started. However you might be able to help things along by getting private reports done by sensory OTs or a PATOSS assessor for SpLDs. Gather evidence from school reports and tests regarding delays or gaps between verbal or written performance. Does the teacher say things about non compliance, misbehaving in class etc. List all the support currently given and how it's not working.Keep notes and dates. Type up and use direct quotes where you can. All this is evidence to support your case.

    Step 5 - what are the 3 or 4 key issues you have faced? We used eating disorder / secondary transfer / likely rejection by peers / stress behaviour demonstrating that he had un-met needs. I explained all the support and initiatives we do at home and that I wanted school to provide similar. I highlighted that we had already had a health crisis solved by small adjustments at school. We wanted to avoid more serious mental health issues by putting support in place for the future as ASD kids are in a high risk group. I suppose you might use high anxiety / school refusal / rejection by peers / high risk mental health problems. It's grim writing all the hard things down but if you don't do it you will not get your child the help they need. Don't think of it as being disloyal - you are getting them to the front of the queue to help them succeed!

    Step 6 - google to see if you can find a couple of studies showing signs your daughter has are indicators of future problems. Quote them to support your arguments.

    Step 7 - when you have 70-80% together send it to the SENCO at school. When I did this it spurred the school into providing more support. It also meant they couldn't later claim they'd not seen or heard of all the information.

    Step 8 - assembling all of this took me ages. At the end you need to satisfy a 2 part test "may the child have Sen". You need to refer to the 4 areas of need and which reports support this. You need to show your child "may benefit from a plan". Hopefully you will have a letter from the NHS supporting this. Use apps and I love PDF.com to put your letter and all reports/evidence into a single PDF file with appendices. My letter was 4 pages and with evidence the file was over 50 pages long! Aim to make it look convincing and competent- give the impression that they should say yes - without doubt! Work out a date 6 weeks ahead of the date of your letter and say you look forward to hearing from them by then. Send it to your head of family services and cc to the SEN team. You should get a receipt back very quickly so chase if not.

    Step 9 - at about week 4 of the process email the team and say you look forward to hearing from them. Give them a short summary of the 2part test and page numbers/refs for where to find it. Basically give them a short paragraph that the assessor can cut and paste. Make it easy for them to say yes! All being well you will get an Agree to Assess decision where your LA will commission an educational psychologist to report - unless you already have a report ready.

    Good luck! It's hard work but can be well worth the effort

  • Sorry about the typos "wNt the RJVP" should say "want the EHCP "
  • mrscoco
    Posts: 190
    oh my gosh thank you so much for taking the time to respond, that is brilliant information!!!
    My husband spoke to our senco today and we have the first forms but that really gives me an idea of just how much info i need to provide. My son had his ehcp done via school but he was much younger and i dont remember having to do much as they had all the evidence.
  • katykins
    Posts: 52
    We were in a very, very similar situation - after 1 week in year 9, my 14 year old daughter 'broke' as she could not cope any more and we had no idea about PDA then. She has been in a CAMHS unit since the end of 2016. It's great you are doing this now. The school have to make educational provision and if that's can't be on site, they are responsible for arranging alternative provision or home tutoring. XXX

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