Paces

Training teachers of children with cerebral palsy - what you don't need to know

First, let me say it again: it is not possible in the UK to train to be a teacher of children with cerebral palsy.

Second, let me give you an instance of a description of cerebral palsy:

Cerebral palsy is caused by injury or developmental disturbances to the immature brain and leads to substantial motor, cognitive, and learning deficits. In addition to developmental disruption associated with the initial insult to the immature brain, injury processes can persist for many months or years. We suggest that these tertiary mechanisms of damage might include persistent inflammation and epigenetic changes. We propose that these processes are implicit in prevention of endogenous repair and regeneration and predispose patients to development of future cognitive dysfunction and sensitisation to further injury. (Source: Lancet Neurology) - my italics

Just let me run that past you again: leads to substantial motor, cognitive, and learning deficits ... developmental disruption .... predispose patients to development of future cognitive dysfunction ..

The word "patients", of course, is a giveaway that the origin of the description (Lancet Neurology) is rather a medical than an educational one. How much more interesting then is it to find in the description  cognitive, and learning deficits ... developmental disruption ... future cognitive dysfunction.

In other words, for the child with cerebral plasy, their 'motor deficit' is intrinsic to who they are and how they see themselves, as learning, developing individuals.

So now what does the DfE have to offer by way of training of teachers of these children? In "SEN and disability skills: Core skills in special educational needs and disability" the official view is expressed this way:

All teachers will have pupils with special educational needs (SEN) and/or disabilities in their classes and it's essential that they know how to help these pupils fulfill their potential.

Trainee teachers should have the opportunity to develop the core skills that enable them to teach all learners.

And what are these core skills?

• planning and teaching for inclusion and access to the curriculum
• behaviour management, and an awareness of the emotional and mental health needs of pupils (to build their self-esteem as learners)
• assessment for learning (learning skills)
• an understanding of when professional advice is needed and where to find it.

No mention whatever of an understanding of the nature of the disability. Clearly, what trainee teachers (and qualified teachers for that matter) do not need to know is anything useful about the condition that is so integral to the child's personality, sense of selfhood and development as a learner.

What don't teachers of children with cerebral palsy need to know? Anything whatsoever about cerebral palsy.

What, of course, every parent should know about - even if they choose something else for their child - is the system of schooling and upbringing known as conductive education, whose qualified professionals have spent 3, sometimes 4 years in training, gaining an understanding of all that is necessary to the teaching and upbringing of a child with cerebral palsy.

 

The Autism Education Trust - impressed, I want one for #CondEd

The Autism Education Trust: I'm impressed with what can be achieved, though since it was set up in 2007, I suspect I should have known of them. Is this what we need for Conductive Education in the UK?

"The AET was launched in parliament in November 2007 with support and funding from the government. It is the only umbrella organisation working specifically on autism education across the voluntary, public and private sectors.

The Autism Education Trust (AET) is funded by the Department of Education (DfE) and was founded by Ambitious about Autism (formally TreeHouse), The Council for Disabled Children (CDC) and The National Autistic Society (NAS).
The AET is a partnership of organisations with an interest in autism and works to improve education for children with autism. It is hosted on behalf of the partnership by the NAS.

The AET helps raise awareness of the importance of appropriate educational provision for children and young people on the autism spectrum through a range of dedicated events, information sharing conferences, web based resources and ongoing research and project work.

The AET is governed by a Programme Board made up of professionals, parents and people on the autism spectrum. Its work is informed by a voluntary Expert Reference Group and Youth Council (young people on the autism spectrum and their siblings).

Is the incidence of cerebral palsy static or increasing?

Here's an odd mention of cerebral palsy. It comes in  article warning about the dangers of toxic modern chemicals on humans and human development. Perhaps incorrectly, we tend to think of the incidence of cerebral palsy as being static. This research would suggest not, potentially at least.

In yet another warning, researchers from the Mount Sinai School of Medicine in New York and the University of Southern Denmark predicted a “silent pandemic” of brain conditions such as autism, cerebral palsy and attention deficit disorders, identifying 202 substances known to poison the brain as “the tip of a very large iceberg”.

The whole article can be found in today's Daily Telegraph "Human bodies contain too many damaging chemicals".

Make what you will of it and of the reference to cerebral palsy. Googling "silent pandemic" + "Mount Sinai School of Medicine" seems to link back to work first reported in 2006. Adding "cerebral palsy" brings up a variety of years including links - like mine - to today's Daily Telegraph and similar articles. Maybe it's all just a re-hash of 'old news'? Still, the notion that the incidence of cerebral palsy could be increasing strikes me as worth checking out.

Yet another assessment Yet another assessment another assessment another assessment

"vkkdmmg gkr  glmkkk kkfmnkv   gjgkf nf aksnc v kdvnvkbkmvv askkcn fnv  bh cnb dnq  4 5 gkc  vjv djkdkv cnfnsj fjjvn nvjjfm dnfh  gnnbx dnncbv f nmvvmv kcjv   nnvj"

No. You've not misread. Your computer hasn't suddenly failed. I wanted to show you what the screen typically looks like when our Sarah uses her laptop. Sarah will sit and type keys randomly. Occasionally, she might ask how do something: how do you spell this or that, for instance. She likes to send emails and asks for help. Her Mum or I will do the typing to her imperfect dictation. Then she will press the key to "send". She likes her Mum's iPad, especially a drawing app. She knows all the ring-tones on both our phones and, because she has amazing hearing, regularly hears them before we do, especially if the phone is in the other room. You've got a text, she'll say, or someone's calling you - knowing whether it's her mum's or her dad's phone. She likes phones - and can manage quite long conversations on them - particularly with friends or family who know her well. She's been able to do that for quite a while.

The letter said there would be a phone call first. Then a questionnaire. Then they would determine if Sarah was fit to work. If the questionnaire was not properly completed, benefits might be "affected".  "cbvbv  fjkg f kfkkg  fjfjg  nnvkvk", Sarah might say to that.

So, of course, the letter was addressed to Sarah's Mum, whose telephone manner is restrained and polite (important as "they" are recording the phone call for legal purposes) and whose keyboard and general questionnaire-completing skills are excellent.  Actually, I'm not quite sure what the telephone call was for. Whatever it was, the person calling might has well have been one of those robotic voices the local hospital uses to check you've remembered your appointment, so little did it matter what Sarah's Mum said or asked; the caller just wanted to send her questionnaire.

An assessment. Yet another assessment. Another opportunity to demonstrate what our lovely, loving, caring daughter cannot do. Well, she cannot write and she cannot read and she can't count past 10 most days and she can't cross the road on her own and she can't get buses on her own, or dress herself or clean her teeth or cook a meal .. not even put a kettle on to make a drink. But on Sunday when her Gran had gone up to bed, she thought she heard her Gran choking and called her Mum who was in the kitchen "Nanny needs you. Quickly. Quickly, Nanny needs you". Sarah knows about strange throat noises and choking - she's been around other people of her age for whom such sounds are danger signs, help is needed. (No panic. The strange throat sound her Nanny was making in the bathroom was using some antiseptic throat wash. All was well, her Mum assured Sarah.)

Prove to me what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do ....what? Again? .... Again? She's 29 years old. Do "they" not know that she's had Disability Living Allowance at the highest level since she was three? That throughout her school years she was assessed as having special educational needs? That she is a person with spastic quadraplegia? That she has had assessment after assessment?

How many more assessments will she have to have during the rest of her life? How many more people will assess her, who themselves live in their own homes, raise their own families, go on holidays of their choice, enjoy a social life with friends of their own, because they earn their salaries to pay for it all because there are countless peope like Sarah who cannot. 

People who are in work because Sarah cannot work. Cannot.

People asking utterly unnecessary questions; requiring utterly predictable answers in questionnaires; to reach absolutely foregone conclusions; causing distress to already stressed families.

So, yet another assessment. Yet another assessment another assessment another assessment xxncnf, jdfhf  dhfhf  djdjfjf fnfjvjvvif jcdjcvjvnf v vjvjjvjvnv

 

 

Play critical to child development: controversial guidance from Chief Medical Officers. Or not.

"the amount of time babies and toddlers with cerebral palsy spend strapped in buggies or car seats should be cut down"

"toddlers with cerebral palsy should be allowed to move around or be physically active for at least three hours a day"

"The new guidance reflects growing concern over children with cerebral palsy who do not exercise enough, which can be linked to obesity and brain development"

"recommendations include encouraging babies with cerebral palsy to move about and be active from birth, for example on activity mats or swimming"

"there is considerable international evidence that letting children with cerebral palsy crawl, play or roll around on the floor is essential during early years"

OK. OK. Hands up ... I added "with cerebral palsy" to each of the quotations above. The quotations are taken from a BBC News report of guidance published jointly by the Chief Medical Officers for England, Scotland, Wales and Northern Ireland.

It has long seemed self-evident to me that there is a clear link between physical activity (let's call it "play") and brain development (let's just call it "development"). I just do not think this is controversial or surprising.

It has long seemed evident to me (about 28 years, to be precise; my daughter Sarah's age now), that children who cannot readily play for some reason, such as cerebral palsy for instance, need specialist help to do so. 

It has long seemed evident to me that this should be so in Sure Start centres, Children's Centres, and in Nursery, Primary and Secondary school settings - and is not.

It is the lack of such specialists - learning specialists, educators, conductors - that seems to me controversial and surprising. It is the lack of discussion about who is teaching what and how - in other words trained specialists who understand pedagogy and curriculum in relation to children with cerebral plasy from birth, that seems to me controversial and surprising. 

Yet so often it is the suggestion that we need conductors - or any trained educators at all - that is regarded as controversial.

The SEN Green Paper, for instance, is largely silent on these issues.

An important contribution to Conductive Education literature #CondEd

"Conductive Education" written by Gabor Fellner, Headteacher of Paces School and published as a free eBook in pdf format. On first reading, it is a clear and, to the lay reader and professional alike, accessible account of conductive education.

I shall look forward to reading it at leisure and reviewing.

Searching for an answer, any answer, some answer

You probably didn't see this - unless like me you read the Sunday Times last Sunday (or care to pay to get through Rupert Murdoch's paywall).

Underneath a prominent front page picture:

Sasha brown, 3, has taken part in the first trial to treat cerebral palsy using stem cells taken at birth from the patient's umbilical cord. Her parents say her condition has improved.

On page 4, a main news story spreads over 6 columns with a lovely picture of Sasha and her Mum and a pet white rabbit. Two paragraphs caught my eye:

Although Tania Browne's "gut instinct" is that the stem cells are responsible for Saha's improvement, she admits that she cannot prove this because her daughter has received other treatment, such as physiotherapy, occupational therapy and hydrotherapy.  ....

Sasha .... has been treated at Great Ormond Street hospital and Moorfields Eye Hospital, both in London. She has also had physiotherapy at the Bobath Centre and the National Institute for Conductive Education in Birmingham.

I do not criticise any parent for doing everything they can for their child. I do not question that parents will see improvement in their child before any one else.

Yet I am saddened. Firstly, this rare mention of Conductive Education in a leading national newspaper betrays confusion on the part of the journalist. Secondly, I wonder how many parents still chase one 'treatment' after another, looking for an answer?

I wish the Browne family - her parents and Sasha especially - every happiness. At 3 years old, Sasha will be starting nursery and school will not be far off for her. Will she be taught by anyone who understands her cerebral palsy?

Spoon Theory #CondEd

This could be the shortest post I've ever written!

I'll leave you to read "The Spoon Theory" for yourself. Just click on the link.

It applies quite well to parents of children of all ages with cerebral palsy too.

 

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#CondEd is a Twitter hashtag

Britain's first MP with CP

An interview in this morning's Independent with Paul Maynard, Britain's first MP with CP.

You can catch up with Paul on his website or his blog. 

Paul is an advocate for special schools.

I wonder if anyone is talking with him about conductive education? (I'd be interested to know if you cared to share the information. And maybe link that up with approaches we are already making on behalf of CE to politicians and others.)

Come on! Give me a hug!

There's a story in this morning's Independent "A hard Chair equals a hard heart" based on a report in the journal Science. John Bargh of Yale Psychology Faculty reports work extending his own 2008 research that experiencing physical warmth promotes interpersonal warmth, that tactile sensations influence social judgments.

A couple of quotes from the reports:

""Touch remains perhaps the most underappreciated sense in behavioral research," says co-author Christopher C. Nocera, a graduate student in Harvard's Department of Psychology. "Our work suggests that greetings involving touch, such as handshakes and cheek kisses, may in fact have critical influences on our social interactions, in an unconscious fashion." (eScience News)

"Nocera says that because touch appears to be the first sense we use to experience the world -- for example, by equating the warm and gentle touch of our mother with comfort and safety -- it may provide part of the basis by which metaphorical abstraction allows for the development of a more complex understanding of comfort and safety." (Science Daily)

You'll see from the links that a quick Google shows that substantially the same report is already being replicated on the internet before reaching this morning's UK newspapers.

I'm reminded of meeting Tony Blair and of all the images of all those politicians greeting each other with a hand-shake and a touch to the elbow or shoulder.

As ever with such research reports, I ponder what happens in early days, months, years (and even over lifetimes) if the opposite is the case - here, the absence of tactile interactions: a mother and child separated at birth, the baby in intensive care maybe; a child with cerebral palsy who cannot, through movement dysfunctions cannot initiate the interpersonal tactile experience; does initiate matter?

And I wonder what this might have to do with conductive upbringing and conductive pedagogy, with not just children but adults too.

Come on! Give me a hug!