Paces

The emotions of labels: a parent's tale

Some writing just gets to the heart of it. The impact of it. The emotions of labels.Doesn't matter what impairment your child has.

Violet is herself visually impaired, a "Mum of 2, wife of one.  Disability campaigner. Novice Blogger and tweeter and expert chocolate eater!" she says. One of her children has Asperger's syndrome. Her blog post "High Functioning Autism vs Aspergers: The emotions of labels" is about her response as a Mum. 

Look, here's an extract, but just take a moment to go and read it for yourself.

On the way home on the bus it all suddenly hit me.  It was real, written in black and white. I realised it would never go away.  I had subconsciously been hoping that they would say there really was nothing and that B would eventually grow out of the difficulties, challenges and unique behaviour.  I didn’t feel the relief I had expected to feel.  That, in itself, caused feelings of confusion.  I felt sad and upset.  I felt like we had all been given a life sentence to something we didn’t understand and at that time, knew very little about.

On top of all those feelings I felt guilty and confused about feeling the way I did.  I want to talk a bit about the guilt.  I really struggled to relate the very real emotions I was feeling as a Mum with the values I believed in as a disabled person and had worked towards promoting for a large part of my adult life.

As a disabled person I believed (and still do) that all people have value and that we all have equal rights irrespective of impairment or health conditions etc.  .... 

So, why did I feel sad?  B was still my Son, he wasn’t changed in any way, he wasn’t worth less just because he now had a new label.  Why did I feel like my world had been turned upside down?  I was still his Mum, I shouldn’t be feeling sorry for him or myself.  Disabled people didn’t want pity.  As a disabled person he deserved rights and respect not pity and sadness.  At that time I did feel sad and because I felt sad I felt guilty.

Thanks to Special Needs Jungle for drawing my attention to Violet's terrific piece.

How many children have SEN? Again.

Actually, I was googling "Brinks-Mat" and "Stephen Lawrence". Links between criminals and detectives in the two cases had been mentioned on BBC TV, last Saturday, as I was making myself a slice of cheese on toast for breakfast.

Searching for something quite different, in other words, as I find often happens Google threw up "Can 20 per cent of schoolchildren really have special needs?" - an article by "writer, biographer, journalist and broadcaster" Peter Stanford in yesterday's Daily Telegraph.

20% is some sort of average. Peter Stanford points out the difference between Richmond upon Thames (11.8% of primary pupils on the SEN register) and Liverpool (22.6%). On this blog, in October 2010, I noted DfE statistics that in primary schools boys overall were much more likely to be registered as having special educational needs (25.4% with or without a statement) than girls (14.3%): "Are we failing 1 in 4 boys said to have special educational needs?"

I concluded:

I don't know about you, but it strikes me that if as many as 1 in 4 boys have "some form of special educational need' then there is something seriously wrong with our perspective on schooling or on children or on special educational needs or on all three.

Peter Stanford, having asked the question, an important one in my view - perhaps the most important one in the five billion pound (and more) industry that is SEN - seems as perplexed as to the answer as anyone. "But why, if numbers of statements are falling, does the money spent on the system continue to rise?  ... No one seems clear about what is going on, least of all anyone at the Department for Education."

Pointing the finger in turn at parents or teachers or local authorities or money, reviewing possible explanations, hardly seems satisfactory. Perhaps it's the whole system, the whole apparatus, the whole concept? In 2005, even Baroness Warnock, who helped devise the SEN system, repudiated it.

In a blog posting on her website, Special Needs Jungle, author,former television journalist and Mum, Tania Tirraoro, who was interviewed for the Telegraph article, sets out "What I really think".

What I said when speaking to Peter but didn’t make it into the piece, was that I believe that the pressures of today’s society on children, parents and teachers are immense ...

(Some children) may or may not actually have special educational needs to start with, but if their home life is insecure and they live in poverty, it is sure to have an impact on their learning. They may just need attention and nurturing to give them self-esteem and confidence in themselves.

Tania is surely right, as you must read for yourself. But I still cannot bring myself to think it right to categorise 1 in 4 boys (never mind 1 in 5 children) as having a 'special educational need'. The term, the concept, the whole system is unwieldy, inefficient and does not serve the education of children, their parents or those who would teach them.

 

First report of Labour SEN review - and actually there was something interesting

Special Needs Jungle reports "Special needs experts offer views for Labour's SEN plicy review". There are no surprises, but there was indeed one something worth a moment's attention which I copy below. First, the event itself - as Andrew Sutton recently wrote on Facebook 

"UK: SEN CHEWING OVER THE SAME OLD NOURISHMENT-FREE GRISTLE
The Labour Party is holding yet another weary review of 'special educational needs'. Look at its agenda, if you can bear to: http://www.nasen.org.uk/latestnews/?news=109

Not a hint that the system has no idea of what it is doing, employs 'teachers' with no training in pedagogy, and does not even grasp that this results in the fundamental problem of children's not being taught.

Just to reinforce the point, Andrew then added the Comment:

Why are they doing this anyway. The Government surely is about to publish a White Paper. The old agendas are all trampled flat, nobody has anything to say. Haven't people anything better to do to fill their (highly) paid time?

So it's good to find a nugget of something interesting - and not just because I too am a Churchill Fellow - recipient in 2007 of a Winston Churchill Memorial Trust travel fellowship (and yes, you should check it out). Here it is: an inspirational mother and daughter:

One inspirational mother and daughter team are Nadia Clark and her mother, Katie. Nadia has cerebral palsy and is deaf. She uses a vocal synthesiser to speak, but her indefatigable spirit and intelligence shines through and she soon hopes to go to University. She is the recipient of a Winston Churchill Foundation grant to research alternative methods of communication.

Her mother, Katie, is a woman of great determination and she has worked tirelessly to support her daughter. She spent two years looking for a school that would take Nadia, moving her family across the country to do so. She later formed the parent-carer forum, One Voice Communicating Together and believes the future for SEN & disability services should be about “looking at things differently and more creatively”. She stressed, and I thoroughly agree with this, the need for good emotional support for families in the early years, saying supporting parents’ self-esteem is vital if they are to be able to be strong for their children.

Each will find their own inspiration and interest in their story. As one who has just seen his daughter aged 29 years move out of the family home, I can assure anyone that "good emotional support" is essential for parents (... and grandparents ... and siblings) well beyond "the early years".

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You can find Special Needs Jungle's ever interesting updates on SEN on twitter as @SpcialNdsJungle and also on Facebook, though I haven't checked the link.

BTW I don't know how to link to Andrew's specific Status update on Facebook, but if you go searching for it, it was on Monday this week.

 

Taking the long view, for a moment more

Responding in a Comment to my post Taking the long view, for the moment, Andrew Sutton wrote:

I too wish every success to everybody trying 'to work out how, sustainably, to create "a place for ​conductive pedagogy that can accommodate children up to age 18" .... and beyond, no doubt, to independent citizenship apart from their parents.'

In brutal reality, I wonder how many people/institutions this might add up to world wide. Tsad Kadima have shown the way, the Perrin family is trying very hard (but is Paces involved institutionally?)

A fair question, "but is Paces involved institutionally?' Well .... yes, sort of .... and maybe in a surprising and interesting way, although the answer is not quite straightforward.

The "Perrin family" (with the Hague family and the Abbey family) have certainly taken on this work, as distinct from, say, the City Council. We have, for instance, supported ourselves as parents through this transition, there being nothing else on offer. The experience has convinced me completely that this is a transition with which parents, just as much as the young people, need a guiding hand. We have, also, made the running in finding accommodation and, if our earlier aspirations fell to the wayside along this 11 year journey, to set up a social enterprise, owned by the young people themselves from which they would rent accommodation, we have in the end found accommodation that looks like it might work very well indeed. And, no, Paces has not really been involved in that.

However, as a settled solution appeared, so our adult group, "Leaping the Void", has actively - and conductively - helped two of the young women, including Sarah, in the approach to the transition. Last week, they were choosing colours for their bedroom walls. Yesterday, they all went to tea together. I have no doubt that this is why Sarah obviously feels positive about it. So, yes, Andrew, when the time came, institutionally, Paces stepped up to the mark.

What complicates the answer, what makes it perhaps more interesting, is this: Paces Campus was set up, as we used to put it, to create a resource for children and young people with cerebral palsy and their families at the heart of a local community centre. If anyone would like to see more, take a look at Paces Campus website, or visit us on Facebook. It's an unusual model for a conductive education centre but one with several advantages for mutual support.

The bungalow which the the three young women will shortly make their home has been bought and refurbished by AbbeyCare. AbbeyCare's office is based at Paces Campus and its entrepreneurial founders are parents of a daughter with cerebral palsy who, when she was younger, attended Paces School and is one of the three housemates. AbbeyCare will supply the care package; Paces will supply daily activities during the week, as well as some evenings and weekends. This, to me, is a fine example of the Campus mutual model in action. So, yes, Paces Campus is institutionally involved.

Obviously all this is not solidly established; no more than the City Council do we have a smooth, well-ordered process for managing the self-determination aspirations of other young men and women who might wish to follow. Sarah and her two friends remain our foremost pioneers, helping us get it right. (In a fairer world, they might be paid as consultants, might they not?)

What interests me, aside from being Sarah's Dad, as Paces' Chief Executive for a little while longer yet, is the Government's intent, set out in the SEND Green Paper, for a unitary health, care and education plan for each individual, to be maintained from 0-25 years. In other words, at a stroke, we will have 'lept the void' that faces so many at 18, on leaving school, and 'institutionalised' the planning for the transition to actual independent living, away from the parental home, for those who wish it. Now we as a society, as a bunch of schools and institutions, can do this well or badly - or even not at all. But crucially, there will be a structure, across health, care and education, for achieving this, which in our experience, is almost entirely non-existent, currently, despite the good will and efforts of the individual social workers involved.

How then should Paces respond? (1) How should we arrange "a place for ​conductive pedagogy that can accommodate children up to ...." not age 18 but age 25, and make the experience for them of perhaps coming to Paces almost daily from 18 to 25 years, from leaving school to leaving the parental home, conductively meaningful yet quite distinct from "school"? and (2) How should we arrange for their journeying "beyond, no doubt, to independent citizenship apart from their parents", to live conductive lives, in and from their homes, perhaps coming to Paces rarely?

Two quite separate questions. Needing two quite separate answers. If there are conductors out there who can help with creating these answers, I would really like to hear from you.

And my thanks for the challenging question, Andrew.

 

Cherish the Parents

Over on Conductive World, Andrew Sutton asks "Cherish parents. Is this bureaucratically possible?"

Together, Sarah, her Mum and I are perhaps about to experience a time of enormous change. It is one we, her parents at least, are looking forward to and yet are anxious about, swinging constantly between these two extremes. Sarah is about to move into a new home, along with two of her friends.

As part of this process, we have received the following questionnaire. It is entitled "Individual Support Plan". Presumably to be filled in by Sarah, there are 7 questions:

1. My Life at the moment

2. What is important and essential to me?

3. What do I want to change?

4. What can I bring with me? (e.g. mobility car, special equipment, Informal Support, DLA)

5. How will I make, or be supported to make, decisions?

6. How will I be supported and how will I spend my budget?(Including contingency)

7. Making my plan happen. (E.g. Bank account; arrange service start etc.)

I cannot find the words to describe how this makes me feel other than that I haven't a clue how to help Sarah go about filling it in.  Do you?

Parent of a disabled child? Read this. Weep. Get angry. Cheer for Mom.

The sentence that gets me is "The teacher seems unconvinced of this notion."

Just read it. And I defy you not to be moved. Caleigh's Corner Days 2-3

Thanks to Glenda Watson Hyatt (@GlendaWH) for pointing it out.

Oh - and while I'm still angry after reading about Caleigh, don't ask me about Safeguarding

Parent founded special schools. How many, ever?

Does anyone know how many special schools in the UK are run by charities that were originally founded by parents? Or where I can find out?

On twitter @newmanswords posted:

#freeschools - loadsa money, tailor-made for the chattering classes, now big expensive consultancies to create more.. http://bit.ly/hlgBIM

To make @newmansworld's point, his link is to just such a consultancy. Following his tweet, we had an interesting exchange of thoughts.

However, our exchange led me to ponder this: the Free School invitation is to parents and other groups to bring forward ideas for new schools; we at Paces accepted that invitation and proposed a special Free School; we, in fact, had first set up Paces School from 1997 as an indpendent school - and since 2009 a non-maintained special school ... but how many special schools, or schools of any kind, have ever been set up by parents since, say, 1900?

Does anyone know? I'd be pleased to hear and will post any information.

The blink that says: I’m disabled but happy.

"Rose did not utter a word for the duration of her stay with us. It would have been more than a miracle if she had. This four-year old of a friend has an undiagnosed condition that renders her blind, quadriplegic and, as far as it is possible to tell, mentally disabled to a profound degree.

"Since Rose was serenely silent as she lay for hours undisturbed in what seemed a vacant wakefulness, it was easy to imagine that there wasn’t a real person there at all as her mother, Julie, my wife and I and our own children talked and ate a few feet from her. Yet when my elder daughter picked her up and rattled next to her ear a toy called Waterfall, a beatific smile suffused Rose’s delicate features. It was a moment at once moving and shocking – shocking, at least, to anyone who presumed that so limited a life was incompatible with a capacity for happiness.

So begins Dominic Lawson’s powerful piece "The blink that says: I’m disabled but happy" in last week’s Sunday Times.  He goes on to consider the paper published in the latest British Medical Journal that the majority of patients with “locked-in syndrome” report being happy – to the astonishment, as Dominic Lawson reports – of the media at large.

Parents, of course, like Julie Evett and Dominic Lawson are not at all surprised. 

I do not attempt here to summarise the article, nor to comment on it or add my agreement, except to say that Dominic Lawson ends his article: “Fortunately for Rose, her mother is a tigress in her defence. In that, at least, she is lucky.” That, I do agree with. How often it is the case.

Footnote:  Excerpts from “When a Mother’s Love is Not Enough”, featuring Julie Evett, can be found on Rosa Monckton’s website. Scan down the left hand sign and click on the rose.   

Unlike me, they would not love her

"Unlike me, they would not love her", so said Janet Cameron, in April 2006, rejecting the option of her 24-year old daughter being in permanent care. "One day, we may have to accept that Sophie would be better off living elsewhere, that we can no longer manage. But I will feel that I have failed her again." For a year, Janet had been writing in the Guardian of being a carer for her daughter. It is evident that being Sophie's parent, her Mum, was first and foremost.

On 30th May 2006, Sophie died suddenly and unexpectedly.

Janet's last "Who Cares?" column appeared on 6 September 2006.

Sarah' like most evenings, is sitting on the sofa in the front room, drawing while listening to tapes and watching Jamie Oliver on TV. Her Mum has gone upstairs - possibly to check emails. I'm .... well, I'm writing this.  In all, a very ordinary evening. Typical even.  We've had an easy pleasant day. Indistinguishable from almost any other Saturday.  The sun shone for a while: a chance to continue tidying up in the garden, ready for spring.

We are at the point when it is becoming increasingly difficult to manage and - what is perhaps more important but probably counts for little in the scheme of things - we should like to have for ourselves what time remains to us of our own lives. 

Ideally, we would find somewhere for Sarah to live with her friend, Kirstin. But we are no nearer solving that than we were when she left school 11 years ago.  As a society, we seem to have no solution, no system to manage the transition to living independently - for young adults or their parents.

Like Janet Cameron, I find the thought of Sarah going into care unbearable. yet if something should happen to one of her parents before we get her settled, that is what will happen. Who, in care, would love her, like her Mum and I do?

Julie Evett wrote to her local MP and to David Cameron

You can find Julie on Facebook. She's a campaigning Mum of 4-year old Rose who more than once has made national headlines. Her personal story was one of those featured in the November 2009 documentary "When a Mother's Love is Not Enough", Rosa Monckton's film about the pressures on parents of children with disabilities.

Julie has now written to her local MP, Nick Harvey, and to David Cameron. She has kindly allowed me to copy them here. Unfortunately, I can't reproduce the unique layout of the originals but you can download them here:

Download Dear_Mr_Nick_Harvey

Download FOR_THE_ATTENTION_OF_DAVID_CAMERON

Text of Julie's letter to the Prime Minister, David Cameron:

FOR THE ATTENTION OF DAVID CAMERON

Dear David Cameron.  My name is Julie and I have a four year old daughter called Rose who has an undiagnosed brain disorder. You and I took part in the same documentary

 ‘When A Mother’s Love Is NOT Enough.

You watched my daughter screaming in pain, you listened to me talking about wanting to commit suicide and wanting to take the lives of my other two children as I couldn’t cope with the huge demands of caring for Rose 24 hours a day 7 days a week.

I still can’t cope with the daily battles.

I moved from Lincolnshire to Devon in the hope of better services and i’m still battling daily. I’m emotionally and physically tired.

 I just want to be a MUM

PLEASE help my family and every other family with a disabled child before its too late.

THERE ARE HUNDREDS OF FAMILIES WHO ARE EXHAUSTED, many close to breakdowns, others contemplating suicide .

FAMILIES LIKE MINE.

Julie and Rose, Devon

 

Text of letter to Nick Harvey MP:

Every Child Matters?

Every Disabled Child Matters too! And their siblings AND their carers.

Dear Mr Nick Harvey, I have an appointment on the 18^th of February with yourself. I shall be attending with another parent, her disabled daughter  and my disabled daughter Rose. Both girls are severly disabled and will be in wheelchairs. Here is a brief email to give you some background information.

I have had to give up work to care for my daughter around the clock and find myself battling everyday to make sure my daughter has a good quality of life. I have two other daughters aged 13 and 10.  These are the things I’d like you to help me with.

To make my life bearable and to manage caring for Rose I desperately NEED:

A suitable affordable home. I have been placed in band B on the housing register. I am allowed to bid for a four bedroomed home (these are very rare) however my family need a home on all levels, I do not wish to care for Rose in a downstairs bedroom away from the rest of the family. Can you please discuss this with the housing department on my behalf.

Rose has had many admissions to Caroline Thorpe Ward and will do for the rest of her life. The nursing staff do a fantastic job however the ward needs new specialist equipment, also a member of staff dedicated to families with disabilities to support them throughout their stay.

On two occasions I have had to stand my ground when doctors have ‘discharged’ Rose home. On both occasions (after battles) I have had Rose transferred up to Great Ormand Street Hospital. This severly impacts on family life and incurs great costs and is physically and emotionally very draining. I would like doctors on the ward to be reminded that parents are the ‘lead’ when it comes to their childs’ care. Parents need to know that they can ask for second opinions and need support in this area.

There are many many services that are not available and many that clearly lack funding. Children like Rose are fully depended on their carers to speak up for them and many families are too tired to do this. I can completly understand this. In my opinion it seems that those who ‘shout loud enough’ get heard. I do not want special treatment for my daughter I just want peoples attitude to change towards every single disabled child so that they are  all treated equally.

North Devon is a beautiful place, with many elderly and vuneralble residents. I’d appreciate your help and support in making changes so that North Devon can offer excellent care to the disabled as well as the abled and set examples for other counties.

I have also sent you an email that I sent to David Cameron and also to the press,  I have met with you on a couple of occasions and you have been very thorough and chased up things very quickly, I hope this will be the case again.

Kind regards Julie Evett