Mother fights for her Daughter to come home
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To get Lee out of an inappropriate unit and back to the safety of a large loving family.
Mother calls for urgent action as she fears her daughter's life is in crisis and can’t see where her own daughter sleeps at night. We are silenced by everyone, there is no communication from the authorities were she stays.
Kevin Healey national Autism campaigner said, ‘it’s an utter disgrace that the family can’t even see where Lee sleeps let alone what’s in her room. I’ve seen pictures that Gillian has shared with me before her daughter went in; she has lost a considerable amount of weight as she does not eat as well. I think that her behaviour is more challenging when in environments like this; people in this situation need to be taken out of an environment of this nature.’
Gillian Mead adds, "Lee has had a very sad history, Global development delay, passed around all her life, schools :- Lee was school refusal from the very start, and the proverbial payback at home time was a daily occurance, very sensory, and would hold her hands over her ears, run if Dad hard boiled eggs, and could never stand Loud noisy crowded places. People outside school would find us a source of entertainment and stand by and watch the performance outside the school in the mornings and afternoons, I was asking GPs, Health visitors for help! from a young age, Lee eventually at aged 10-11 was statemented for Special needs when an incident at the local Primary involved injuries to her 'privates'.
Lee then went to a unit for Special needs children and did well. However because she was now 11, she was sent to the local secondary Modern, where everything deteriorated , school refusal, Flight or fight response kicked in, I became a Matron to help her at this school, one Teacher in particular singled her out and it went badly wrong.
Then she went to a weekday boarding school for special needs, was diagnosed ADHD by Dr Finn Cosgrove a Child and Adolescent Psychiatrist and Psychopharmacologist, He gave me an American book on ADHD and prescribed Ritalin, which really helped but only lasted 4 hours. Soon the School refusal kicked in again big time. On a Monday morning she needed two Nurses and the Headteacher to take her kicking and screaming to School. On a Friday afternoon she would come home like a bottle of shaken cola and explode! this explosion lasted until Monday morning again. I now understand it was anxiety.
Dr Cosgrove prescribed Risperidone. He was a good Dr with good insight, but his role came to an end and Lee saw a female Psychiatrist who was about to emigrate to Australia before she left she referred Lee to Professor Jeremy Turk at Elliot House Bromley in Kent. The Social Service manager very very angry at this! However Lee was Diagnosed Autistic.
The weekday boarding school failed, Lee was sent away to Merrifield, a Psychiatric adolescent unit attached to Tone Vale Hospital where she was subjected to a great deal of psychical restraint often naked! I subsequently brought her home again.
Lee can read, (write Immaturely), use a computer, did well at college courses became a first aider, At home although dearly loved Lee was a trial! messy, had to be in control, very clumsy and always breaking things, eating all day long, so I began to look for Care homes, Lee has had several and all have broken down because of the lack of understanding regarding anxiety and the flight or flight response, When I read an article on PDA I was astounded a Eureka Moment!!! every in this article described my Lee, I spoke of it to her then Psychiatrist who acknowledged PDA with Lee, I have lived it, breathed it, and Leant about PDA ever since,
All placements Lee has been to have had no training in PDA whatsoever.
Lee was Living back with Mum and Dad as she was not coping , she was eating morning noon and night, and whacking on weight with the Risperidone, she went on to be Diagnosed with type 2 Diabetes ( a Family trait), Her Social worker recommended Independent living, however this incurred a lot of staff changes and a whole new ball game, Lee does not do change well! It Triggers anxiety, But she was initially doing well in Devizes for a Couple of years, she seemed happy! and then..... someone decided it was time to move her into a new build flat in Trowbridge BIG Change! The anxiety kicked in and the Carers went! Lee again came home to Parents where she feels safe.
We have had many placements where they think they can cure Lee with Sanctions the more they do this the more they make her anxious!!
And then back last year Lee was placed in an Independant flat within a block of flats for special needs, no risk assessments that I am aware off. There were Carers but they went home of an evening, so Lee was left alone, she was very frightened, and extremely anxious, so she was ringing the buzzer to request help! when this did not help she rang the Police, Lee went into Meltdown when they turn up at her door, Lee was taken to Melksham Police Station and Paul and I were called in.
When we got there we found Lee in a state of Terror! she was taken then to a Mental Health Unit in Swindon and then to a Mental Health Unit in Bristol, we were told there are no units in Wiltshire. From There Lee was sent to a unit in Pontypridd. I have been sending PDA Information to them I spoke to her Consultant Psychiatrist who although he acknowledged PDA said "it comes under Autism" Staff have been non -communicative, so has the social worker, so has the Wiltshire Commissioners we have had NO feedback from the hospital, no meetings with anyone! since Lee first went there in the Spring. A Wall of Silence!! we have not seen her room, or the hospital inside, when we visit we are shown to an annexe and Lee is brought through to us. Phone calls to her have got harder, they give us the run around on a daily basis saying the phones got 'broken' that was a very long time ago, plenty of time to have them mended!!
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