So Peter has been in hospital for some time. The acute side to his condition has settled somewhat but in order for his progress to be maintained and continued Peter needs a therapeutic residential ASD placement. Everyone has agreed this. Making it happen on the other hand is another issue altogether. The impact on his mum is horrendous. Most Professionals, even the ‘good one’ are either clueless or powerless. Those that are in a position to help go to whole new lengths to obstruct the provision of the support he needs to come home.
Earlier parts of the book can be found here.
Chapter 5 – The Black Hole
The next few weeks were a blur of emotional, physical and intellectual exhaustion and of constant fear and worry. The detail isn’t clear to me now, as I write this. I do recall doing a lot of shouting and more crying of course, as no one seemed to be ‘getting it’. Talking hadn’t worked and I was desperately worried. On one particular day I yelled and sobbed at everyone I spoke to. The person that practically finished me off was an SEN Casework Officer. I’m not proud of my behaviour. She uttered the following words…
“…Because you want him ‘out of county’….” She was referring to the fact that there were no schools in our locality that could meet his needs and that, consequently, we would need to find a school further afield.
I exploded and it is a good job she was on the phone and not anywhere nearby.
With fury and every ounce of force I could muster responded with “I do NOT want my son out of county (I held back an additional unkind phrase, thankfully). What I WANT is to go back 5 years. What I WANT is for my son not to have been neglected at school. What I WANT is for his needs to have been met at First School. What I WANT is for him never to have got ill and never to have been left in this state. I DO NOT WANT my son out of county or in a residential school. It is what he NEEDS now because of the appalling behaviour of senior staff at two of YOUR primary schools, supported by YOUR so called specialist teachers and educational psychologists”.
The SEN Casework Officer did not deserve this barrage in any way. I was wrong to shout at her. I like her. But the culture and attitude towards parents in that organisation is awful. Her innocent comment says it all. “It’s what the parents want”. I can assure you that very few parents want their child to need to go to a specialist residential school. And, if their children do need residential schooling, then working to enable this is the most heart wrenching, bittersweet, process imaginable. For goodness sake, SEN services, separate the child’s ‘needs’ from the parents ‘wants’. NEVER accuse a parent of WANTING to send their child ‘out of county’. It’s cruel.
The questions I had posed a week or so earlier, about the apparent reluctance to follow medical advice and subsequent lines of accountability for these decisions, was that an emergency multi-agency resource group (MARG) meeting was convened with lead commissioners.
Senior staff at SEN Services had known for months that Peter’s needs had changed and for about 10 weeks that he needed a residential place to enable his discharge from hospital. It would appear that this now constituted ‘an emergency’ within the Local Authority. I am sure that if I had not submitted those questions, along with a summary of the information that had already been made available to them and copied in the Director of Children’s Services, there would have been no emergency whatsoever.
This senior team of commissioners responsible for finance (MARG) told our SEN Manager that there was a tripartite agreement to place Peter at a specialist residential school on a 52 week basis. She called me to let me know the same day and followed up by confirming it in writing which, as it happens, turned out to be meaningless.
I believe that our SEN Manager works hard and for very long hours. I imagine that she has an impossibly high caseload. Our case was clearly unusual and she had not worked with MARG before. It seems this group went on to misinform her and was left sitting in the middle between us and them. We both deserved to be treated better.
Inexplicably, the chair of the MARG group recommended that the SEN team looked at placing Peter at a school for children who were largely non verbal and with extremely challenging behaviour. This terrified me. I felt that all the power and control sat with them, that they had no clue about Peter at all and that he could be placed in the most unsuitable environment imaginable. We needed to find an appropriate school. I had had no help in knowing what was out there and Local Authority staff seemed to be making random and impulsive decisions based on no sound decision making and with no regard to Peter’s actual needs. In the following weeks I would have to battle, quite literally, to ensure he wasn’t placed at the school with a diabolical care record, ‘inadequate’ school Ofsted and out of control teenagers. Now I was having to protect Peter from SEN services for heaven’s sake.
Already at breaking point, I felt there was nothing more I could do to make things right for Peter. I was exhausted, still trying to sort everything for both children when I was at home and travelling 100s of miles every week. I decided I could no longer travel safely to Peter’s third CPA (also his second discharge CPA). Our social worker went and that was reassuring. Like at the previous CPA, the hospital team put a lot of effort into explaining Peter’s difficulties and needs and I think she gained a good understanding. SEN services were partially represented by phone but, generally speaking, they could remain comfortably in a zone where what they didn’t know, couldn’t impact on their decision making. Again, Peter’s discharge could not be planned.
Since the delays in providing appropriate provision had resulted in the extension of Peter’s hospital stay, there were other implications for us as a family. For one, it is not cheap living so far away from your child when they are in hospital. There are many obvious financial costs and also a number of hidden ones.
Financially we were already in a tricky situation. Two years earlier my organisation had shut down so my post had been made redundant. The impact on us of Peter’s needs not being met, whilst he was at school, were such that I required a great deal of flexibility from my employer and my job had been structured so that this was possible. Finding another that was able to offer the same degree of flexibility was not possible so we were living ‘off the state / on benefits’.
The rules at the time stated that, if a child is in hospital for more than 84 days, then their Disability Living Allowance (DLA) is stopped. Once DLA ceases, then Carers Allowance is withdrawn. Our income was approximately halved.
Just to recap. Peter’s relatively minor needs weren’t met at school (Years 1 – 5). As a result, I was unable to work (effectively losing a job, career, professional registration and pension) and so we move on to benefits. Not having his needs met costs Peter his mental health and he is admitted to hospital. We then loose our benefits because his discharge from hospital was delayed by the lack of appropriate, timely, intervention from the Local Authority.
I have clinical qualifications, a Clinical Degree and a Master’s Degree with distinction. Quite frankly I would like to be working and contributing more to society.
Peter was still 150 miles away. There was no plan for discharge. His distress was rising.
Lily wasn’t coping either.
About a month before Peter’s third CPA, Lily had become practically hysterical with distress. She was still getting scary memories from certain aspects of her school, missing Peter, frightened that he wouldn’t get better and come home, angry that he had got ill in the first place and traumatised having witnessed many of his dissociated and hallucinatory events over the past few years.
It was all building and the uncertainty about his discharge and future care and plans was affecting her as well as Peter. She talked endlessly of running away from school, made elaborate and detailed plans and wrote to tell her teacher. She could no longer manage her feelings and was desperate for them to be heard and understood and she was still on the CAMHS waiting list.
So. Her teacher escalated it to the Head as this was ‘a safeguarding issue’. The Head met with Lily and Lily’s understanding of the conversation was that she was told to forget about her brother. Clearly this was a misinterpretation of what was meant by the Head. Lily describes crying hysterically the whole time she was in the office. This Head wasn’t ‘getting it’ because she had ‘known’ for more than 4 years that Peter was N.O.R.M.A.L. She had decided in an instant, it appeared, when Peter was 5, that there was nothing wrong with him and that all of the health professionals were wrong.
Within days, Lily was hysterical about attending school. For a couple of days we waited outside school and her teacher came outside to help her to feel able to and go in to school. When this stopped helping she was physically moved into school on one occasion. After that I stopped forcing her. Lily spent the next few days sitting in the cupboard under the stairs. It was the only place she felt safe.
Peter’s clinical psychologist happened to be on a visit on one of these days and saw for herself Lily’s distress. I believe she shared her concerns for Lily with the Head Teacher. She also put Lily on the list at CAMHS for urgent discussion, given that her situation had now escalated.
The Head knew better. She knew there was nothing wrong that replacing me with a new mother wouldn’t fix. She called Children’s Services. To say I needed this like a hole in the head would be an understatement.
Up to this point I had felt that the Social Worker was perhaps beginning to understand some of our complicated situation. I don’t think she realises how her actions that day impacted on our ‘relationship’.
Prior to the Head calling our Social Worker, I had, in fact, left some messages for her. I was desperate for help and support. She had not replied to my messages but eventually, when she did, I was hopeful that she could help us. Having spoken to ‘school’ (without my knowledge) she came and spoke to Lily. She then treated me to some ill informed comments that seemed to demonstrate that she didn’t understand Lily’s significant distress nor Peter’s difficulties AT ALL. There was no evidence of her taking an open mind nor carefully finding out the facts. As a result she demonstrated poor judgement. Any trust I had in her ability to be objective was damaged and her actions left me feeling that she didn’t have the skills to actually help us.
Within eight days I had arranged for Lily to start a new school. With everything else that was going on, moving her to a new school was something I could have lived without. I felt that I had no choice. Lily still needed CAMHS intervention urgently but started to mange school again.
Click here for part 8
 Within the Local Authority, Specialist Education Needs departments, we were supported by a Casework Officer (to coordinate the information and draft the EHC Plan) and a more senior SEN Manager.