26 September 2014

WARRIOR MUM - FINOLA MOSS


The first thing that hit me when I began writing this harrowing story was how beautiful and carefree 17 year-old autistic Isobel appeared in the family photos.
Free as a bird, and as happy as a lark, Issy lives at home in the bosom of her family. She's well travelled and has  enjoyed holidaying in places like Ireland, Majorca and Bruncana, but soon all that may change.

Issy's days with her family are numbered, and if the 'powers that be' have their way, Issy will be removed from her family home and forced into independent living. Of course we all know that independent living really means independent 'of family' living, because many of us have a son or daughter with complex physical/psychological issues who in independent living would still require 24 hour care, a far cry from independence as we know it.

It used to be court orders that detained people in long stay hospitals, now court orders are being used to detain people in independent 'of family' living. 

What is going on?

Where are all the major charities? 

And why aren't they screaming from the roof-tops?

Issy's  story is alarming and I'm sure many of you will agree this 'right of passage' 'best interest' clause, when a vulnerable person reaches the age of 18, these days, is being bandied about a bit too often.

I will say no more about it and leave you to read Issy and her family's story.

Many thanks to you all for your constant support for these amazing warrior mums. Your regular comments and tweets are so appreciated.

Love from

Michelle





"The clock is ticking, and it is now only just over 10 weeks to when they can send the police in, and take Issy away for ever."


Issy on family holiday in Majorca

“Issy’s birthdays were always tinged with sadness, no discos, no boyfriends, no exams, more judgement, but her eighteenth on the 17 th December will be the saddest.
As soon as that day dawns we can no longer legally make any decisions for her- even ring the doctor or dentist. All our parental rights disappear overnight.”







M. Hi Finola, Solicitor, and previous Senior Law Lecturer, born and bred in Liverpool, lives in Sheffield, Mum to two beautiful daughters, welcome to warrior mums. 

Read this and Weep!

Finola's story

 
It was a cold December night, the delivery room’s huge bowed frosted window reminiscent of an artic voyage. 
After a normal delivery Isabel arrived, happy, healthy and just under 8 pounds, all was well with the world. Her hair was golden, soft and downy. Her eyes, huge and black. She breast feed quickly, and then lay contented on my shoulder.

Her only prolonged crying was after her three months injections, her temperature was high.

She was cared for by Janice, a child minder who adored her, whilst I worked, walked at 18 months and adored the Teletubies, passed all milestones, but refused to go near a potty.

Whilst shopping she would run away, and in Woolworths was found happily eating a chocolate orange, so we used a wrist reign until she was 4, and she was addicted to her dummy.


Recently, I discovered videos taken of Issy at 4, shouting ‘ Shut up you noisy bugger’, at her sister crying in her pram,  watering  flowers in the garden, with what she called a tea pot, I asked her did she like Harry, her sisters pet name, she remained silent, but her reluctance to say ‘No’ expression, said it all, so I persisted, 'Is Harry your friend', she looked away, and then turned to me with the cutest of smiles, and stared intently at me with the words, ‘You are my friend, Mummy’.

At the time I did not realise how lucky I was to have caught this moment for ever. It was to be, effectively our only close mother and daughter conversation.

Isabel was to start our local parish primary school. We had high hopes; it was top of the Sheffield league table. I had described her as lively, and bright, but Isabel still refused to open her bowels on a potty, and our road through the bewildering world of experts began.


Her University nursery, mysteriously talked of ‘these types of children’, a child psychologist diagnosed a specific language disorder.

Issy spent her time continually describing Bob the builder videos, ‘Wendy’s got her hair up and make up on’, she would shout, and then details from the next scene, even when out of the room. At 5 she read age 7 ‘Peter and Jane key word’ books for hours out loud, faster and faster, instantly memorising the words. 


A week before she was to start school Isabel sat a battery of tests, at the Sheffield’s Children’s hospital, the assessors robotic question, ’What is wrong with the picture?’ remaining unchanged, despite Isabel’s obvious confusion, until I eventually rephrased it after several pictures, to, ‘What is missing from?’, wondering at the competency of the expert, and the validity of the assessment.

I went back alone for the results, the same apathetic, robotic assessor  informed me Isabel did not have a general learning disability, her IQ was above average, but she  was on the autistic spectrum, I didn’t have a clue what that meant, nor, where on this mysterious spectrum she might be.

I had previously looked up the definition of autism, and as a severe development disorder, that manifests itself before 2, concluded it could not be the problem. But the lady said no more, and handed me an information folder compiled by the National Autistic Society. We had been processed, their job was done.

Nothing more was forthcoming. Politely I attempted to elicit some clarification, and wittered ‘I’m pleased Isabel hasn’t general learning disabilities, as that means she’ll at least get some GCSEs’, the lady showed no reaction except to say that was unlikely. I persisted, asking if she might ever marry, again, apparently unlikely.

So I had no option but to leave with my folder, which contained an application form to join the National Autistic Society, together with a Bank standing order, and a glossy leaflet describing the three vague and meaningless impairments of this, apparently devastating disorder, which could apply to anyone,- difficulties with communication, socialising and forming relationship, and Isabel always looked people in the eyes. Later attempts at any clarification were patronisingly dismissed as ‘parents in denial’.

I walked back to work numb, and bewildered, feeling I’d been hit by something, but didn’t know quite what.
Now Isabel could not start school later that week. She now needed a SEN statement. This took over 6 months, forced a £100 per week payment to her nursery, and meant Isabel, after phasing her in, only started school  just before the Easter break, but was expected to keep up with the rest of her normal classmates. This was the start of the nonsense, that is ‘special needs’ education.
The school did nothing to accommodate Isabel, other than allow one of their dinner ladies to assist her in class, arrivals and departures were a nightmare, because of the crowds, and Issy still waited until she was home in a nappy, before she would open her bowels. A fact, I was forced to point out, might account for her worsening behaviour in the afternoon, rather than merely her autism. And so began a future of her behaviour being divorced from a physical reason and blamed on her autism.
But Isabel did make her first, and only real friend, Rebecca, and together they would hold hands in the playground, and go to the park at the weekends, until her mother, without explanation decided the relationship must end, and teachers were told to separate them. This was a sad day for Isabel, and her reaction was as always blamed on her autism- she had become a mysterious disorder.
Isabel was invited to parties, and behaved well, but if someone was hit, or objects broken, parents were all too ready to blame her even though she was not the culprit. My daughter would always be the perfect scapegoat.

At 7 Isabel could write anything, if you spelt it phonetically, and wrote little notes to her class mates, thanking them for being nice to her, or playing with her, the children were very good to her, but sadly not the parents, the vocal minority resented a special needs child, and reminded me in a very nice way,’ this is not a special needs school’.
Towards the end of year 2 the school decided Isabel was, (understandably) monopolising her classroom assistant and the assistant was moved to another class. Clearly Isabel took this as a rejection, and must have attacked her at dinner time, and the assistant had slapped her.
The facts and reasons for the incident were covered up, as necessitated by our litigious self preservatory culture, and within two weeks, a meeting was convened and decided her school was not now appropriate for her needs, despite the meeting a month earlier agreeing it was. Her SEN statement for year 3 was changed to fund a mixed disability special needs school placement.

And so commenced Isabel’s scholastic decline, she went from SATs to P Scales, and regressed, despite more and more money being ploughed into her ‘education’.  Such is the scandal of our ‘special needs’ provision.
Isabel became increasingly unhappy in school. She refused to go some days, and social services got involved, their answer to this, and to provide our first overnight respite, was to take her to the respite facility after school, without telling Isabel.
This inept handling  proved a disaster, and Isabel returned the next day, soiled, bruised, and in a terrible state, but we could not find out what had happened, and she now totally refused to go in the school bus, and we had to take her by taxi, restraining her in the back.
The Local Authority had again let Isabel down badly, but as they could not be blamed, we as her parents had, not only to pick up the pieces, but also take the blame, along of cause with the ever present excuse of her autism.
Eventually the journey proved impossible, and Isabel was forced to attend  Sheffield’s Children’ Centre for 8 months, and continued to soil herself. Children and Adolescent Mental Health Services (CAMHS) became involved, but merely put her on respiridone, unknown to us, this was an off label trial. When we complained of the devastating effect on Isabel- breathlessness, huge weight gain, crying all the time, overeating and regurgitating of food, incontinence, black under eyes, we were told these were, other than weight gain, not on their list of side effects, so were not a result of her medication.  Isabel’s received no physical examination. Such are drug trials.

I complained to CAMHS, we had a meeting with a manager. Within two weeks without notice, or even inkling from social services, their last email was to arrange a meeting to discuss future education, as I had found and been in touch with the head of a National Autistic School nearby, we received a court application for a care supervision order, and were summoned to appear before the Magistrates Court within 48 hours. My request for more time as we didn’t have a solicitor was denied, so we rang a solicitor named on the list provided with the Summons and she said she would meet us at court.
That day, as usual, my husband took our other daughter to school, went to work, and I was left to get Isabel up, bathed, as is usual she was covered in faeces, due to her continued impaction, for which despite 8 months of requests, had still not been addressed. Isabel’s behaviour was becoming increasingly violent, particularly when covered in faeces, and as usual I was alone, the taxi arrived, and I took her to the Children’s Centre, and then went on to the Magistrates Court.
We went into a small room, and our solicitor announcing, ‘I used to shout at my children until I started to working part-time’. Continuing with ‘I believe you have not been well’, to which I pointed out I worked full time, and had just finished marking 280 exam scripts. ‘Social services will need your GP medical records could you sign this consent, and the court will need psychological reports on you both’. All of which thank goodness I continued to refuse, despite her threat that if the court do get these they will have nothing to go on and may presume the worst.
 I've just had a word with the social worker, and she is prepared to provide you with restraint training’,’ your case is a very complex, it will need to be transferred to the county court’, fortuitously allowing her to claim her time at a higher rate.
So the Magistrates, one who I recognised, duly agreed, complimenting us on making the progress by agreeing an offer, which we had been requesting for years, and to date has never been provided. We picked Isabel up from the children’s centre covered in faeces.
The case continued, us both being forced to turn up at 10.00 am, our solicitor then giving us an order from the social services, which I then amended, with lots of ‘if’s and ‘reasonable’, aware that if we failed to comply, due to Isabel's school refusal, the order could be enforced by a care order, and the police’s removal of Isabel for ever, despite the supervisory nature of the application.

We stood huddled in groups in the court foyer, the social services solicitor and social worker, the Children and Family Court Advisory Support Service (CAFASS) guardian and her solicitor, and us and our solicitor. At one point so close, I remarked to our social worker,’ you could get us to court but you couldn’t get us nappies’.
Social services did not need this expensive, timewasting charade, we had never not complied with their requirements,- access to Isabel, attendance at the Autistic School I had found in September, attendance at Children’s centre, a hospital appointment for a bowel scan, which we had also fought for.
The position was quite the reverse; it was the Local Authority who had failed in its duty to provide support; education and medical care not us. They needed the legal enforcement and worse still were using the law to cover this neglect, with the ultimate threat of an interim care order. They could also remove our other daughter.

At the second court hearing, now in the plush surrounding of the purpose built care courts, our solicitor went into the judge, without us as  appeared the practice, but I have since found, shouldn’t be. She returned with an ‘agreed’ court direction that my other daughter be assigned her own social worker, and undergo a psychological assessment.
I told her social services had not even discussed this, so how could we have agreed it. She would have to go back, and disagree it. Furious I stood up and said,’ if they go anywhere near her we’ll be on a plane to Australia, to which she sneered ‘I’ve never acted in an abduction case before’.
She then said told me if I didn’t agree, the court would have nothing to assess my daughter’s welfare on, and might apply for a care supervision order in respect to her. As if on cue, the guardian’s barrister then rushed in to announce the judge wanted them in court. Despite my solicitor’s speedy exit, I stood my ground. She returned to inform me the judge had told the social services, if they wanted their direction, they would have to apply for care order.
And the pressure for such an application was kept up throughout the proceedings by the guardian’s barrister, voicing her concerns for my other daughter’s welfare.

Eventually some 8 months after Isabel started soiling herself after our one and only overnight respite, we arrived at the clinic to investigate bowel problem. Isabel was a star, the terror of ketamine and inpatient attendance was avoided, and we were shown the scan, faeces could be seen almost to her chest. I could only guess at the pain and discomfort this must have caused her. How brave was she, and how appalling were those statutorily charged with providing for her.
We were charged with clearing it out, which despite the mess we were desperate to do.
Sadly I suspect the real reason the NHS were now forced to sort out the impaction, was not Isabel’s welfare, but the National Autistic School not wanting the mess of a continually incontinent child.
I spent the following weeks camcording my statement. I still have the DVDs. The poor solicitors typist typed more than 30 pages, I bought her a bottle of champagne.
The social services submitted no expert evidence and the application was withdrawn.
We tricked poor Issy into leaving home by a return journey to the clinic, but drove on past the hospital, and for a further 20 miles. Amazingly Isabel looked sad, but resigned, as if she had always known this was inevitable, she went freely with a care worker to the swings, whist we were shown her new home, a sparely furnished, bare walled, clinical box with a small view of a wall.
The team leader said this must be the hardest thing a parent could do – how many times already had she said that, and tissue boxes were strategically placed in the reception and office, the buildings resembled Auzwisch.
Our social worker asked us to sign some documents, again we didn’t know what they were or that this would be required. It was a s20 consent form. Isabel was now ‘a looked after child’ a prerequisite to the £177,000 per annum funding. I asked pathetically, what would happen if we refused to sign, she said we would have to take Isabel back home with us… it hung in the air unsaid ‘and wait for the care order’.

My last glimpse of 10 year-old Issy was from our car as we drove off. I strained to see if she was happy on the swing.
I remained numb throughout the journey back, we did not know  when we would see Issy again. Suddenly on arriving home the strongest feeling I had ever experienced suddenly hit me full on, I couldn’t bear to live another moment without Issy. It paralysed me.


We were only allowed a visit once a week through to November 2007, during this time we did not know if she would ever be allowed home again it was a terrible time, and then a weekend. 

We had wanted a 38 week placement but they said Isabel would have problems with bus-- rubbish as we took her back and forth and on buses etc to Ireland; they just wanted the money. They said she had to be assessed for 6 months but no evidence of any assessment taking place in NAT school, and care worker who did agency work in school said as did her assistant teacher that she was not severe enough for such a school and was similar to pupils in our local special needs school.



By December 2007, we fought for 3 week ends every month, on the fourth, we would go up on Friday and have dinner with her in the family room, and two weeks holiday in N. Ireland, EASTER, CHRISTMAS AND SUMMER, where her fathers family are. We hired an apartment over the road from her granny and granddad and Uncle Sean near to her Aunties Roisin, and Fionnuala and her nieces Naimh and Eve and Christopher, so plenty of people in the apartment, and to visit, She loves babies. And a week in Majorca... So a third of the year she was with us, but no deduction to the NAT £177,000 and we had to provide pocket money and some clothes money- We got £80 a month DLA-- its all about the money to them.
 

Part Two - Finola's blog
Isabel. And the horror of her Future 'Care'


Isabel is Isabel.


She has huge black eyes, dark curly hair and the prettiest of smiles. Her skin is silky white. Her voice soft. Her laugh mischievous. She screeches with joy and claps her hands when happy. She is dextrous and agile, never tripping, or dropping the several dishes/videos she efficiently tidies. She giggles as you fall over her quickly drawn out foot.
She loves watching people, particularly in Spain, and loves nothing more than being in a group she knows accept her on her terms, or better still simply ignore her. She likes to do things quickly, hates clutter, and loves walking and being tickled. Is hypersensitive to other people’s emotions, needs solitude, and understands more than we could ever know, and has a spooky sixth sense for nasty or fake people.
She is a pure soul, that is happiest when loved. Her hugs are freely given to those she likes, and are the warmest in the world.
Issy on family holiday in Bruncana
But none of this matters, or is relevant. To the state, she is whatever they need her to be, and they are the experts.
Her CAMHS psychiatrist stated as an autistic, she could not form relationships, her educational psychologist refused to allow her to be described as ‘bright’, despite her tested IQ being well over a 100, (very convenient for her SEN funding).
The state’s answer to her malnutrition, abuse, rotten teeth, faecal impaction and depression in her residential school, was not a dentist, impaction removal, or change of abode, but an expensive inpatient stay to enforce anti- psychotic drugs, in a CAMHS assessment centre with an admission required IQ of less than 50.
Issy’s future state carers will be an anonymous, ever changing, people service. The system would not need or indeed allow them to know her. They will be a sea of itinerant, oppressed, poorly paid, zero hour tools in an impersonal, risk assessed, profit hungry machine, that will process Issy for every penny- housing benefit, government subsidies, disability allowance, special care allowance, educational packages, mobility allowance- all can be made available to her corporate carers in just 4 months, when she reaches 18.
And fortuitously, for the state, the worse her behaviour becomes, the more money they can claim to encage her, and as always, her behaviour can be blamed on her autism.
Issy’s birthdays were always tinged with sadness, no discos, no boyfriends, no exams, more judgement, but her eighteenth on the 17 th December will be the saddest.
As soon as that day dawns we can no longer legally make any decisions for her- even ring the doctor or dentist. All our parental rights disappear overnight.
Under the Mental Capacity Act, Issy can, and will be deemed ‘incapable’ of making her own decisions, and the state, not us, will make them for her.
Her valiant, persistent efforts to stay with her family will have all been in vain- as will our care and love. Process rules.
A social worker, known as a ‘best interests’ assessor, will assess the state’s interests, as those in Isabel’s best interests. But will ‘consult’ with us,  our social worker has already reassuring us, ‘We would let you know if we intended to remove Isabel’.
The Court of Protection then, in secret, with us gagged for life, will rubber stamp the social services ‘best interests’ decision.
Isabel will be provided with her own representation, an ‘independent’ mental health advocate, a stranger, preferred, to her parents, and paid indirectly by government. All will be a one way unstoppable cabal.
The judge no doubt, will convey similar sentiments to the judge in Northamptonshire NHS Trust v Another 2014, ‘ I have been struck by how similar their concerns are to fears of every parent whose child leaves home on the first steps to independent living. The sheer normality of their reaction signals to me that ML like any other young man is entitled to the opportunity to fulfil his potential’.
This despite ML’s previous torture at the hands of the state, his parents, and his own wishes, his inability never to be allowed anywhere without two guards, let alone be ‘independent’, and no one having a clue as to what was meant by his ‘potential’ .
Only a few months earlier, Northamptonshire NHS trust had been responsible for the horrific deaths of two young male autistic inpatients, from untreated facial impactions, force fed respiridone, constipation being a side effect, until their organs closed down. Their agency care workers forced to watch. One report in the Telegraph their only eulogy. And still no statistics, or control on the GP use of such medication, despite NHS issuing yellow cards for autistic deaths from antipsychotics for years.
This sad young man, had been made subject to the latest, most costly ‘extinction theory’, subjecting him to things he had an aversion to, his own everlasting Room 101, until an ‘extinction burst’, if ever achieved, unbelievably, ‘experts’ thought this would cure his aversions, despite his autism. It did not work, and his parents had the horror of trying to undo the terrible state damage with their love and care at home, where he eventually improved.
Despite this state ‘care’, the judge sent him back for more of the same. Soon, as with an increasing number of autistics, his teeth will be removed to stop him fighting back, and his ‘potential’ will have to be achieved in indescribable anguish, in a padded cell, ‘eating’ through a straw.
Issy’s fate may be similar, if she survives the respiridone, she has already suffered two untreated by the state impactions.
She will be removed to live in an independent living unit, usually one of the many flats lying vacant in our city centres. Her social worker wanted to use it for respite, and I am suspicious conversations, and a visit there may have triggered the big melt down in the city, which preceded her now 4 month refusal to go out.
Adult services already met with us in May, and filled up their forms, which despite its many ‘domains’, has none for medical care/existing conditions. Officiously the lady told us they do not pay for ‘specialist’ care, evidenced by the mixed disability line of backpacked walkers, one a wheel chaired autistic, with their chatting together care workers, I spotted going towards one of the city’s apartment blocks recently.
The adult social services manager proclaimed, ‘Well what do you want for Isabel in the future’, apparently the novel idea, of a disabled, vulnerable adult remaining with those who have known and loved her all her life and she them, rather than alone with strangers, could not be in that person’s ‘best interests’, as it wasn’t an option.
One of workers in the kitchen reassured me, ‘They will allow you to visit her’.

 
Issy with her Dad


But how could anyone stand impotently by watching their vulnerable, disabled daughter encaged, and tortured, wondering if every visit might be their last, as the self preservatory caring cabal might deem such visits not in their daugther’s ‘best interests’, as they upset her?
The frightening reality was, that the carers in the kitchen, would have the opportunity to spend more time with my daughter than I would, and the option.


M. Finola, thanks so much for sharing your story. I'm so sorry you've had all this heartache and stress. I ask everybody reading this story to please please share on Twitter and Facebook by clicking on the links in the blue box below. It's a cautionary tale that affects all of us! 
 
Twitter @finolamoss

Finola Moss blog     
Northamptonshire Healthcare NHS Foundation Trust v ML