Wednesday, 22 November 2017

Providing for an SEN Child or fixing a hole in the roof??

Schools need children with complex needs like they need a hole in the roof, the consequences are potentially equally costly. 
In some instances there appears to be evidence that Child Protection procedures are used to avoid SEN expenditure. 
  • At the Westminster SEND Conference on 09 11 17, the OFSTED representative confirmed that they look at the issue of SEN Tribunal appeals and outcomes, including interviewing some parents about their experiences. 
  • However it doesn’t seem that they are able to access and interview those families who never get as far as Tribunal.
  • Some children are not assessed for SEND and fail to access resources and crucial support, either because they are not noticed (e.g. a painfully shy girl with unrecognised ADD or undiagnosed autism) or because their parents are regarded as “over anxious” and the system blames them for bad parenting, rather than investigating their children’s difficulties. 
  • Unwarranted Child Protection Proceedings may be invoked as a means of stopping a special needs family requesting assessments, or going to Tribunal, on the basis that the family are exhibiting supposedly rare signs of Munchausen’s Syndrome by Proxy, (now known as Fictitious and Induced Illness) based on the outmoded Freudian assumption that children’s illnesses are family generated, especially as espoused by Bruno Bettelheim who spoke of ‘Refrigerator Mothers’. These discredited theories, which do not take into account recent increases in understanding of Autism Spectrum conditions and collagen deficiency, appear to be making a comeback as a means of combatting parental requests for SEN support. 
  • Some Assessments or support ordered by Tribunals are not implemented, because the child protection system overrides SEN Proceedings, making it possible for others (who have investigated the child’s needs less thoroughly than the SEN Tribunal decision makers) to assert that such assessments or provision could be harmful to the child.
  • Schools are wary of parents who are intent on insisting on assessments or additional resources for their children. At particular risk are families with tenacious undiagnosed autistic mothers, who are perceived as having poor social skills when dealing with education and health professionals.
  • Sources from which information about children with additional needs and their families is gleaned may well include those with no SEN knowledge, but who’ve seen adverts for children’s charities which regularly confuse symptoms of autism or illness with signs of abuse. 
  • The EHCP process (and associated directives on working together) give exaggerated voice to people who’s training and experience lacks knowledge of disabling medical or neurological conditions. 
  • Playground Supervisors may misreport autism spectrum children, who have short temper fuses or are painfully shy and those with collagen deficiencies who bruise easily, as abused children because that’s what the TV told them to think. 
  • When a headteacher hears of a child protection concern, a process is triggered without further common sense review. 
  • Observations are not considered by anyone who actually knows the child or family, because safeguarding policy is not conducive to inquisitorial investigation. The report is escalated upwards to people with no knowledge of the child or family and immediately becomes adversarial with an untried assumption of parental guilt. 
  • These referrals prevent many proper applications for SEN support and instead plunge vulnerable families into damaging CP investigations reminiscent of the actions of the House Committee on un-American Activities, which in his 1954 play the Crucible, Arthur Miller described as being analogous to the 17th Century Salem Witch Hunts. 
  • I would encourage everyone who is concerned about this situation to read this excellent report by Special Needs Jungle.

Jan Loxley Blount TCert., Diploma in Child Development.
Jan Loxley advised Parliament on 'Latch Key Provision' during 'International Year of the Child'. Coming late to motherhood, she was wrongly accused of fabricating her children’s medical and neurological difficulties and formed Parents Protecting Children UK, which has over 1600 followers on Facebook and serves families with additional needs, caught up in the Child Protection system.

Saturday, 4 November 2017

Witch hunting at Westminster

I don’t like witchunts of whatever kind for whatever reason - they always bring out the worst in all concerned. 
There’s always been sleaze and sexual innuendo at Westminster and in politics more widely. I certainly encountered it in my campaigning days, when I was a lot younger and slimmer than I am now. 
But because social mores have now moved on (improved) are we now in a historic withchunt intent on destroying the lives and reputations of people who in other ways have done good work? 
There are undoubtedly people who have brought about social change for good who, in the 80s, when societal norms were very different, had difficulties keeping their hands and other bodily parts to themselves. 
I was interested in this article from today’s Times.
« Dustin Hoffman, now 80, reportedly made crude remarks to a teenage intern in 1985 and pinched Katharine Ross’s bottom filming The Graduate. Must we now shelve Midnight Cowboy and Marathon Man? 
Maybe a truth and reconciliation committee is required where men can confess past misdemeanours and then be judged against the sexual mores of the time and their reformed behaviour. « 
Roundheads have routed the randy old fools | Comment | The Times & The Sunday Times

Fireworks Night 2017 (Alexandra Palace)

Firework Night 2017.

We’d planned to be in Normandy for this years Fête de l’assomption but it wasn’t to be, I missed the fireworks so was determined to see really good ones in London for Guy Fawkes night. My son therefore got tickets for us to go to Alexandra Palace on Friday 3rd November and we weren’t disappointed. We avoided food costs and queues and reminded ourselves of our French experiences by taking little bottles of matin légère milk and natural sausages wrapped in gluten free brioche.

They had used pallets to carefully and professionally build two enormous bonfires, one for Friday, and a second for the repeat event on Saturday. The Friday one had what appeared to be a Roman temple surmounted by a spaceship on top, but I think it was probably meant to be an A for Alexandra on top of a Palace. Maybe they’d put another on the Saturday one next day? It was fascinating watching them light it. They poured flammable liquid around specific areas of the lower parts then four of them entered the fire area with long sticks lighted at one end - presumably the sticks were bound by fabric soaked in something which burned appropriately. They lit the pile in four places, then moved round and lit it again between the little blazes, then moved left again to make 12 and then 16. All perfectly balanced so it wouldn’t fall as it burned. They then lit along the top of some long timber beams and lined them up on opposite sides of the fire, pushing them into what must have been a tunnel underneath with unlit beams, they threw their lighting sticks onto the fire and retired to join the crowd at a safe distance. Soon the most amazing and dramatic swirl of smoke rose from the centre of the fire, completely hiding the top of the pile. Then, suddenly the flames broke through and rose into the enormous plume of smoke. The sky lit up and the heat poured out. We had to move back three or four meters away from our fence side places, as it was simply too hot to stay. It was a phenomenal fire, so carefully orchestrated and controlled, I've never seen one like it or realised there was such an art to fire building. 

Next we watched a bevvy of young women who were inside a giant pumpkin or cauldron on wheels, surmounted by a circus style trapeze which emitted coloured smoke and occasional flames. In turn and in pairs, they stripped to scant costumes and performed on the trapeze. When a pair came off their sisters were ready with warm clothing to wrap around them. Some of the team pushed the structure around the field so others got a view. It must have been very heavy and difficult to move on such rough ground.

Every few minutes bright oval flames jumped into the air from a series of towers. They reminded me of flames from the furnaces of Sheffield steel works when I visited on youth club trips or worked there to earn money in college holidays. 

Eventually the much awaited procession came past led by an enormous Japanese figure surrounded by maidens with parasols in a scene reminiscent of the Mikado. It was followed by several floats which I couldn’t quite see and a marching band of enthusiastic young drummers, who must have been exhausted as the procession had been going for at least an hour before it got to us. Then some more low floats and the biggest float which was a small lorry with a dragons head and tail, it’s belly filled with a rock band and dancers. Bringing up the rear and mounted on the roof of a dark vehicle was a giant metal bird with bright shining eyes and a head which moved from side to side, this animated structure reminded me of the annual procession of lighted boats on the Derwent at Matlock Bath.

Before the procession had passed, the laser show began. Lights of many colours skittering amongst the trees, into the sky and across the front of the parts of the palace building which we could see. From a better vantage point they must have been even more dramatic. 

The young women with the mobile trapeze did another show, with occasional bursts from the lasers and bursts of flame from three nearby towers and the top of their trapeze. Meanwhile the flames of the bonfire continued to dance. 

All of this would have been a very good evenings entertainment , but the best was yet to come. Fireworks from three points shooting into the sky, accompanied by a prerecorded and very varied musical track and at times enhanced by a frenzy of dancing lasers. Twenty  minutes of orgasmic indulgence. Colours, shapes, movement, shells shooting into shells, indescribable. It stopped and then began again from another single source further to the east which added another three or four minutes - less spectacular but very pretty. At the end my son came to find me and I found speech slow to come as I was still enrapt by the experience. Hitherto my best fireworks memory was in Bagnoles de l’ Orne but I think this surpassed it.

We returned to the fire which had continued to burn during the evenings festivities, it was now surrounded by a perfect ring of ash. The people who had lit it climbed up onto the top of Saturday’s pile to enjoy the scene. 

We walked slowly up the hill and sat to talk on a bench. It had been a magical evening. 

Jan Loxley Blount 04/11/17

Sunday, 25 June 2017

Always question WHY a young person is in the care system.

For conference report :
In the sessions on fostering, adoption and leaving care, chaired by the Earl of Listowel, the only speaker who even hinted that some of these children and young people shouldn't be in the care system, was the solicitor Naomi Angell (Osborne's) who mentioned several contested cases including a Judicial Review. Solicitor William Bache (G T Stewart) has been involved in a number of family law cases involving misunderstanding and misinformation. It was recently reported by BBC, ITN and elsewhere that his client Carla Andrews was reunited with her daughter after 8 months,  Paul Storey QC has spoken of a final adoption hearing for children thought to be injured by their parents. Storey observed the birth father contorting his fingers in a manner impossible for someone with normal collagen and sought an adjournment for the family to be tested for Ehlers Danlos Syndrome. Tests proved positive and the children were returned to their birth family. 
Schools are under pressures to increase attendance and reduce spending. The replacement of Statements of Special Educational Need with Education Health & Care Plans and associated directives on "working together", mean that more professional and ancillary workers are operating beyond their sphere of training, knowledge and experience. They are therefore unprepared to identify or recognise such things as Autism Conditions, collagen deficiency problems (e.g. Ehlers Danlos Syndrome) or childhood ME/CFS. When parents of a neurologically different or medically compromised child with poor attendance, demand additional resources to support their child in school, they are often viewed with suspicion and hostility. Other services are called in, but well-intended moves towards working together may be having unforeseen negative consequences. Risk assessments can be misinterpreted and lead to section 47 Child Protection proceedings, with nobody stopping to take stock and consider if this is an appropriate course of action. Once negative comments, views and reports are on file, it is difficult for parents to refute these documents which grow in volume and severity. The psychologist Lisa Blakemore-Brown referred to this as being unable to shake off 'the first gossamer breath of suspicion'.
There may be many children in care homes, foster families or who have been adopted, who (with minimal support) could and should have remained with their birth families. I know a family in which the mother was ill when the child was nearing the end of primary school, they needed short term practical help. Instead the child was sent for a psychiatric assessment, which missed the (later diagnosed) Asperger's Syndrome and misinterpreted pocketing chocolate biscuits from the waiting room as a sign of emotional deprivation (rather than poverty and liking chocolate). The mother was assessed whilst recuperating from major surgery; her hormonal upheaval was mistaken for ongoing psychiatric illness. The child was ripped from home, local support and a safe community to be placed with a drug-using father on a rough estate. This was followed by a succession of unsatisfactory out of area foster placements and as a last resort a children's home in which the young person picked up a drug habit. It took the entire time from year 7 to GCSE failure to reunite this family. Care leaver support is ineffective or absent and the loving mother is left wondering where to turn.
I think this example and the ones cited above of young children with Ehlers Danlos Syndrome being removed from their families, demonstrate that any consideration of the care system needs to look in more detail as to why some children and young people enter the care system in the first place.

Jan Loxley Blount TCert., Diploma in Child Development.

Jan Loxley had a pioneering career in children's play, including advising Parliament on 'Latch Key Provision' during 'International Year of the Child'. She came late to motherhood and in 1999 was wrongly accused of fabricating (now diagnosed) symptoms of neurological and physiological difficulties in her children. Their story led to the 17/10/01 House of Lords Debate on False and Misleading Accusations of Child Abuse. Parents Protecting Children UK was formed to serve families with additional educational, medical, physical, neurological, social and emotional needs who, because of professional failure to understand the complexities of their situation, have been caught up in the Child Protection system. Our Facebook community has almost 1500 followers. We work with False Allegations Support Organisation, Parents Against Injustice Network, condition based organisations and family support groups.

Bearing False Witness - personal perspectives.

Thou Shalt Not Bear False Witness - a personal observation. 

The church group who sent me into a destabilising wave of post traumatic shock, by raising 17 year old matters to deny me membership of a discussion group, are about to discuss the Ten Commandments. Here are the thoughts I would share if I was invited!

"Thou shalt not bear false witness against thy neighbour" is the ninth of the Ten Commandments which are widely understood as moral imperatives by legal, Jewish, Catholic and Post- Reformation scholars.

" You shall not spread a false report. You shall not join hands with a wicked man to be a malicious witness. You shall not fall in with the many to do evil, nor shall you bear witness in a lawsuit, siding with the many, so as to pervert justice, nor shall you be partial to a poor man in his lawsuit. " Exodus 23:1-2

Whatever the views which officials of St Mary's school and church expressed and reported about our family around the time of the Millennium - it is  apparent that they were mistaken, misled or just plain wrong and that their witness against us was false witness. Our family were wounded and (because of the rumours spread about us) our children were bullied - it is hardly surprising that we were angry and felt betrayed by many in the church community. The now retired Bishop of Edmonton, the Rt Rev Peter Wheatley, apologised to our family for believing the headteacher and the acting priest in charge without undertaking his own proper investigations. 

Our children have both graduated with first class honours and are building interesting careers. It is now known that what appeared as symptoms of chronic fatigue in both children were the effects of Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome - and that I too have the heritable condition of Ehlers Danlos Syndrome. It is also known that our family is affected by Autism Spectrum Differences & Difficulties; our son has a confirmed diagnosis of Asperger's Syndrome. 

Awareness is growing of the overlap between Autism Spectrum Conditions and Ehlers Danlos Syndrome. It is apparent that families with members on the Autism Spectrum are frequently victims of misunderstanding and false accusations of child abuse. 

Our family story led directly to a House of Lords Debate : Lords Hansard 17 Oct 2001 Column 645 and following. 
Earl Howe rose to call attention to the damage caused to families by false accusations of child abuse; and to move for Papers.... I come now to the second major trigger for false accusations that particularly concerns me, and that is the condition known as Munchausen Syndrome by Proxy or MSBP.... The danger of such a broad spectrum of behaviour being packaged into a single portmanteau term, is that in the hands of those who are not sufficiently trained or experienced to know better, it is a label that is all too easily applied without due care.

In the wake of the Lords debate and with support which included St Margaret's URC Church, I founded the organisation Parents Protecting Children UK which now has an active core community and a Facebook following of almost 1500. Parents Protecting Children UK has contributed to government and other enquiries, research and conferences. We have supported numerous families with disability and chronic illness who have been wrongfully drawn into child protection matters. Several families have written to thank me for helping them be reunited with their children who, because of misunderstanding and misrepresentation, were in danger of being forced into state care or taken for adoption.

I hope that nobody in the community of St Mary's will ever again bear witness in a situation where they don't have sufficient information or knowledge to understand the situation they are speaking about. 

I hope for no further comments / actions / rumours about our family. Apologies would of course be appreciated. 

" I think we should adopt a maxim in life that everyone we meet is unique, everyone we meet knows something we don't know, is slightly different to us in some ways. Don't see them as a threat, don't see them as the enemy, see them as a source of knowledge, a source of friendship, and a source of inspiration " Jeremy Corbyn Glastonbury 2017

"Nothing about us, without us, is for us." 
("Nihil de nobis, sine nobis")

Jan Loxley Blount, 25/06/2017

Saturday, 20 May 2017

Braille Legacy ****

BRAILLE LEGACY - Charing Cross Theatre - don't believe the reviews - very very well worth seeing. 
I was offered a reduced price ticket for this new musical, which is playing to small houses because of terrible reviews in the Guardian and other places. 
Fortunately I'd heard enough about it in a BBC Radio 4 programme, to decide to ignore the reviews and go. 
Set in Paris in the early 1800s, it's obviously about the invention of the Braille alphabet and numbers, but it's about much more than that - it's about society and political attitudes to poverty and disability- it's about the argument concerning sign language for the deaf - it's about the extent to which people with disability should be given chance to develop their personalities, interests and talents, or wether they should be trained to become cogs who produce goods to finance their keep, in a world without vision (literal & metaphorical). There are many historical, philosophical and literary references including to Voltaire and the French Revolution (both of which were fairly recent) and to Shakespeare.  
My biggest criticism was with the translation which (as can happen) made it sometimes lack expansiveness - and (as with all the reviews I've read) I got a bit annoyed by the over cumbersome set, but if you can find a way to see it, it's very well worth the trip. 
I found the Guardian review 'posey' and vacuous, (Blairite / New Labour pseudo sophistication, not I Daniel Blake) this one here is somewhat better. 
Jan Loxley Blount 20/05/17

Tuesday, 28 March 2017

RIP to a wronged mother.

RIP to a special mother, misjudged by inept professional services.

Back in the very earliest days of Parents Protecting Children UK, I was contacted by a former nurse. Like me she was an older parent and had a boy and a girl - hers were slightly older than mine, her youngest was close in age to my eldest. In both families there were autistic conditions, diagnosed later. In both families a key issue was the Local Authority being unhappy that she & I had won support for our children from SENDIST tribunals. They accused this mum of inventing or causing or exacerbating her daughter's difficulties.
They took her daughter into care and tried to pretend that educational Improvements were because she was away from home (rather than because she was now in the Special School which her mum had identified and won for her). Her daughter was selectively mute and never spoke to her foster carers - she had a secret mobile which she used to communicate with her mum.
When the girl was 16, the LA gave up and let her go home. The new SW told the girl that she was "lucky to have a mum that was willing to have her back" as most people leaving care "had nowhere to go". This new SW simply didn't understand that there hadn't been a single day on which mother and daughter hadn't longed to be reunited.
Once the daughter was home, her life moved forward very quickly, speaking more widely, going to a local FE college, gaining employment and a long term boyfriend and eventually a Council flat of her own. Mum was always on hand for advice and support.
Tragically however, during the years of fighting with the LA, this mum's own needs were dismissed as attention seeking - so she ended up wheelchair dependant. Her health hasn't been good, at least in part because of diagnostic and treatment delays, through interference by intrusive professionals who thought they knew best!
Late last year, on what should have been a happy occasion, mum fell and was for many weeks in hospital  far from home, where the accident happened. She was eventually transferred to a hospital near home, but acquired pressure sores through long hospitalisation. I heard today that she died earlier this month, of septicaemia from an infected pressure sore.
I'll miss her occasional cheery texts - remembering Christmas, Rosh Hashanah etc, sharing holidays and special events - alerting me to TV or radio programmes about false accusations and Child Protection gone wrong.
Most of all I remember how, although I never met her, I felt she was there for me as much as I'd tried to be there for her. I especially remember the night several years ago when my own mum was having a cancerous kidney removed. I was in the hospital car park almost too terrified to go inside, in case the news was bad. This mum texted and then, not liking my reply, put on her best nurses manner, rang me and sent me inside ready to face whatever there was to face, (which at that time was fortunately good).
She will leave a very big hole in the lives of her husband and children. I can't help but think that if idiot Social Workers had kept out of areas (which they simply didn't understand) involving disability and neurological difference, then this family could have had a longer and better time together.

Jan Loxley Blount 28/93/17