I am just preparing myself as I am concerned that there is going to be trouble ahead.
Brief background (if I can keep it brief!) DD (13) has cystic fibrosis and recently suspected undiagnosed PDA, although this has not caused her a huge problem until transition to secondary as was in a small local primary where she had known same kids since birth practically, and felt safe and supported.
Behaviour has, with hindsight, always shown PDA traits at home.
Transition to secondary didnt go well, and her health suffered too, resulting in a year where she had alot of medical changes, a dramatic refusal to do treatment/medication and illnesses which later transpired as school refusal/extreme anxiety. She missed approx 1/3rd of the school year in yr7, but was supported by a very kind head of house, who she liked alot, but who sadly retired at end of that year.
Yr 8 started with her 'trying' to go back, she suffered text bullying from a girl in her year which the school jumped on, but the new head of house wasnt terribly sympathetic to her anxiety and as a result she just refused in October and ended up in hospital again. FLESS became involved, offering her online classes while ill, but only ill due to CF, not anxiety. Almost immediately they started pushing a 'back to school' programme which involved her attending a local childrens unit for lessons, which went OK ish, but the woman, who is also the HE area coordinator, was very pushy and didnt seem to take on board the fact that she had had no treatment for her anxiety at this point, and started suggesting that she went into school one day a week, during a PEP meeting at the school. This resulted in a complete shutdown during the meeting, with my daughter displaying typical PDA behaviour and the lady from the LEA unhelpfully saying she was having a 'tantrum'. She was aware that she was awaiting assesment for ASD - I filled in all my papers abut she didnt do it at all. CAHMs were involved, promised alot and then disappeared completely - we have had no contact from them since Feb, despite apparantly putting us on a course for anxiety in May (didnt happen) and assesment for ASD.
As a result my daughter then became hugely anxious about attending the small unit, and our GP and CF consultants signed her off. I knew the school were arranging an ed psych assesment and we needed to stay 'in the system' until we had the results, because I felt this would help me to understand how to help her to learn in the best way for her. So as a result we struggled to go back to the small centre 3 mornings a week, with the online lessons as and when she could do them (again, typically PDA, she had numerous reasons why the lessons were not 'working'- computer fails, headphones not working, 'forgotten', etc)
Got some very interesting results from the ed psych, who offered direct contact as I suspected he knew we were going to pull her once he was done - and confirmed a very fast and intellegent mind, but with a delay in processing which causes anxiety and a huge emotional shutdown in response - sort of a panic that she doesnt 'get it' as quickly as she thinks she could, followed by a shutdown and refusal/belief she cant do it/switching off. Also abstract concepts or areas where she has no personal reference were difficult for her.
We de-registered in June and the school were fine, suggested to contact the head about coming in as a private student for exams, and wished her luck. Local centre and LEA lady not so. Her initial response was 'well, she got her way then' (I had phoned the lady one day very upset when my daughter had totally refused to go to the centre, was self harming and I couldnt get her out of bed, I think she views it as weak parenting, suggesting I should literally drag her in half dressed, screaming, spitting and smashing herself in her face, and they would 'deal with her' - but Im not prepared to treat her like this, she needs me ON her side, not fighting her, and she has far more health and emotional issues than your average child)
So, since then theyve been ringing me to get this woman to my house for a meeting. Last week I wrote to the FLESS dept and stated that we did not require a meeting, and quoted the bit about how they had no right to demand one. Said we were taking some time to settle.
And now, within 2 days, theyve written to me again, saying this was a meeting offered to all parents so they can discuss and assess plans, etc, and that they will be in touch in Sept to organise this meeting for October, as 4 months should have allowed us to settle into our HE.
My fear is that she has made her mind up that I am a shit parent and that my daughter is just bloody mindedly getting her own way. The stress of what they might try is making me anxious and instead of allowing my daughter to find her feet, recover from these awful 2 years of being bullied by kids, and then by this woman, I am panicing because I am NOT able to get her to do school-like work, and scared that the lack of evidence will demonstrate that I am not fullfilling my duties and it will legally be forced out of my hands. If that happens I cannot say what will happen to her because I know 10,000% there is no way I can force her to school.
I am in East Sussex, my LEA is ESCC. My GP has referred her direct to NORSACA for a PDA assesment, everyone on her medical team are trying to help - her CF social worker supports the HE choice and we regularly have medical staff at our house so I believe that even if they try to involve child protection there has never been any issues about her care raised in the past. However Im scared of what they can do, even if they have not done it yet, and Id rather have my back up prepared if it starts to get tricky
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12 replies
NettleTea · 27/07/2014 13:01
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