The school SENCO and counsellor were very hostile and later defensive. Thank God for BK's therapist, the school nurse and my brother. They read out the doctor's report, they said he clamimed there was fatty liver, something they didn't believe was serious or could cause pain, and that the pain was related to anxiety and school refusal. firstly, she isn't refusing school the way she did in Y6. She has real difficulties in managing day to day noise, over stimulation and translating what is going on around her in a busy, mainstream school environment, but she accepts that she must try and has developed coping stragtergies to let out the anger and stress at home (punch bag, tamploine) before chilling out. She's in too much pain for all this and it makes coping with all the usual stress being autistic brings her. Is it so hard, when you claim to be an expert, that she will find shrieking girls difficult and scary and not friendly and caring, whatever the other girls motives maybe. and that's her quota of socialization done for the day, 15 minutes of registeration! Secondly, I spoke to her GP and he said he written about NAFL and her inability to toerate licenced pain relief and the importance of diet and exercise plus the fact we were waiting for the results of tests which would take 2-3 weeks at the least. He had also written that the neurologist was almost certian that the 'fits' were related to anxiety over school and the liver pain she was in but wanted me to film the next convulsions so they could make sure. The school nurse explained how liver pain is notoriously difficult to manage and yes, and although she, the therapist and I agree the registrar should not have told her, NAFL can, sometimes, develop into liver cancer. Sofie was not making that up when with her 'social and communication' class or with the school counsellor. My brother told them of her changed behaviou all the time and how our Mum had really noticed, seeing her more often than him, and was very worried. I stressed this pain is all the time 24/7, half term, weekends, non school hours, all the freaking time for nearly nine weeks. The therapist again and again stresse that no, you won't see any outward sign of pain, that is the nature of AS/HFA. Also he accused them of confusing the problems of coping in school with ASD and a physical illness and they needed to eparate them but look at her needs as a sick child who also was on the spectrum istead of acting as if the one came from the other. He lost his temper at one point, coming to my defence,
'It is ridiculous to ask any parent about long term academic goals when the child is so unwell, GSCEs or even chosing options for them are years away, for goodness sakes --- we are only in Y7! Like any mother --- is concerned about her child's immediate health, all she can see is --- suffering and wants her well. to ask about her long term future and where and how she wants her educated right now is cruel and unfair!"
I felt the tone of the meeting had taken on the feel of the Core Assessement the Social Workers back in December 2010 but my brother said I was being oversensitive becasue I was so worried but when we saw her therapist it was the first thing he had said to me, how he had noticed it, how the SENCO had changed her attitude.
I wish I had money to sue for defamation of character. Back in 2010 I had previous carers, people who had run various clubs BK had attended over the years and mothers of other children at those clubs all prepared to sign affadavids to state she had attended these clubs and children's parties over the past ten years - I was not denying her opportunities to socialize (the social worker bizarre 1950s attitude to autism, I assume, one of her main accusations at me when I took the decision to home school pro temp, desperate to get her needs met in the school environment). I've seen my mediacl notes. i can clearly demonstrate I was never in a mental hospital or diagnosed with a mental illness apart from ME/CFS in 1996, but that changed the next year when the new government accepted the WHO classification of ME/CFS as a neurological disorder. I have all the paperwork from CAMHS that state her diagnoses of Aspergers Syndrome, High Functioning Autism and possible borderline ADHD. I have a letter explaining the lack of sleep is biological, that she does not produce enough melatonin to swtich off but is allergic to the only prescriable form (it has milk in it). I have the paperwork from the school psychologist to sate she has dyslexia and a short term auditory memory problem. I have copies of my medical notes from 1994 that state I was a frequent attender of the gastroentology clinic and agreed to take part in a study of the relationship between states of mind and the gut - called The Frequent Attenders Study. I had part of my bowel removed in 1992, I had endomerterosis in the bowel, had just been diagnosed with coeliac disease and IBS. I most certainly was not a frequent attender of the mental hospital as the social work notes and core assessment state. But even if I was, that was back in 1994 and this is 2012 where I am are physically disabled caring for an autistic child with a clear physical health problem that is causing her pain.
Why is this happening to us? Does God hate us? Is he punishing us? Has someone cursed us? Everythime I think it can't get any worse it does!
So the upshot was I was threatened with arrest and prosecution over BK's non attendance at school. I was threatened with a referral to social services if I considered home schooling again until she was well enough to attend school, as well as the threat to make BK's key worker redundant if I did (and I don't want that on my conscious). I was accused of going behind their backs and how an autism base wasn't right for her and I was ridiculous to think it was. the very enxt day at school BK finally was seen by the School Austim Advisor - only been waiting since September, June 2010 if you count the primary school one - and after getting her to do a questionarre and talking with her said that the autism base was very good and she might be better suited there. Alas, nothing in writing.
I was made to sign a binding contract to have her in school for mornings on time. now, if the taxi is late they have always blamed her - even if she has been dressed and ready and waititn outside since 8am and has been growing increasingly anxious about them being late - so what to do? If she breaks a bone or has serious D&V she must go, no excuses because if I break this contract a warrent for my arrest willl be automatically issued.
Oh, all my lovely, caring friends overseas who have wanted the doctor to sign her off sick. The school have to go to him/her - they cannot sign off someone under 16. It just ain't so in England and Wales. A huge sledgehammer to tackle the tiny nut of truanting and a few low asperational parents who don't care! The consultant may be able to sign her off, but you just wait for part 3!!!