Hello again,
Long time no see. Yes, yes, I know but it has been manically busy for the last few months. One day things will slow down a bit - hopefully - but not yet, it would seem.
However, on a positive note, since I last posted we have managed to move our daughter, the eldest into an adult community - sort of. It took some lateral thinking however. There are few, if any, residential placements available currently in 'intentional communities' because of the log-jam further down the line. Alice has been waiting and waiting to move, with her stress levels going up. Don't get me wrong, where she was is a very good place but after six (wonderful) - and at the age of 23 - years she'd out-grown college.
She is now a tenant in a supported living house and attends the Camphill community as a day placement. Actually, she's attached to two communities and is using her skills (bakery and gardens alternate mornings and is working on a fabulous rug in the weavery in the afternoons) doing work for both. This seems to be working out very well and she is very happy - thank God!! It also means that she has a wide range of friends and this is a joy. Also is a joy is that she wanted to find ('needed to find', she told me) a 'live church'. After taking five years to sort all this out the icing on the cake has been a smashing 'live' church just across the road from her house. Hoorah!!
The other reason for posting now is that I've been invited to take part in the Special Women For Special Children All Night Vigil in Front of Parliament Square
March 8th 5pm to March 9th 7am
If you can get along to Parliament Square, even for half an hour, that would be great - this isn’t just for women, by the way, chaps are welcome too! I guess we have to show the Government we care sufficiently to make the effort.
I know for some of you that will be totally impossible - don’t worry. We all lead very busy and responsible lives, but please do sign the petition in any event.
Also please do sign up for the ‘every disabled child matters’ campaign (both addresses in the invitation). These are such important issues and as we all know there are still children and families all over the country who are struggling terribly because of the special needs system. Also Social Services are stretched to the limit as they try to work within the confines of the system, adding to the problems. Surely there has to be a better way for us all to work together for the good of our children, and adult family members, with special needs?
Please can you also forward this invitation and details of the petition and campaign to as many of your friends and families as you can. We’ve all felt isolated. Now is the time when we can all stand together to form a voice to be heard.
We all know that we are trying to help the most vulnerable children and adults in our society. Exhausting as it is we have to speak out on their behalf.
I’m going along (in my ‘thermals’ with my sandwiches, sleeping bag and camp chair!) – just praying it doesn’t rain – so maybe I’ll see one or two of you there. God bless.
Love,
Sandy xx (full details of the event follow this)
Special Women For Special Children
All Night Vigil
In Front of Parliament Square
March 8th 5pm to March 9th 7am
As you are aware the 8th March 2007 is the United Nations International Women's day: a celebration that ordinary women can make history and bring about positive change.
To mark this occasion a group of mothers, including Maria Hutchings and Julie Maynard, have organised a vigil outside Parliament Square, the House of Commons, London.
Special needs families, and anyone who supports their cause, are invited to attend this vigil to celebrate the unstinting devotion and love of mums, grandmothers, relatives and carers for special needs children; and to highlight how ordinary women are trying to bring about changes to a system not fit for purpose.
For many Mums, caring for children with special educational needs and disabilities can mean an exhausting battle. They struggle to get their kids the right help, the right education, and the right support.
It is worth noting:
Around 7% of children in the UK are disabled.
1 out of 3 disabled children live in poverty.
Only 4% of disabled children are supported by social services.
More than a third of children given Asbos have underlying brain disorders such as autism.
The System is failing special needs families across the country:
1. A Special Needs Education System Not Fit For Purpose
In June 2006, the all-party House of Commons Select Committee for Special Educational Needs published a report on the failings of the current system of special educational needs. It concluded that the current system is no longer fit for purpose and called upon the Government to take action. The Government's response was described as inadequate by the Select Committee Chairman Barry Sheerman MP. The Government must take action to stop the failure of children with special educational needs.
(Please sign petition and forward on to as many people as possible.
http://petitions.pm.gov.uk/FitForPurposeSEN/)
2. Respite Services Not Fit For Purpose
As highlighted by the Every Disabled Child Matters campaign:
The Disabled Children (Family Support) Bill is trying to create a right to short breaks for families with severely disabled children. The Bill is being led by Gary Streeter MP (Cons, Devon SW) and has cross-party support. At the moment, hardly any families get support to care for their disabled children – and as a result, 8 in 10 families describe themselves as at breaking point. Where short breaks / respite is offered, it is often of poor quality and not fit for purpose.
(Please go to the Every Disabled Child Matters website to find out how you can support the Bill –
http://www.edcm.org.uk)
3. Disabled Toilet Facilities Not Fit For Purpose
As highlighted by the current Changing Places Toilets Campaign:
Currently, carers are forced to change people on dirty toilet floors.
The Changing Places campaign is calling for Changing Places toilets to be installed in all big public places including city centres, arts venues and shopping centres, to tackle the problem faced by many thousands of disabled people and their families in the UK caused by the lack of fully accessible public toilets.
Without these facilities carers are often forced to change family members who have profound and multiple learning disabilities on a dirty toilet floor with little or no privacy. However the alternative is to limit outings to a couple of hours or to not go out at all.
A Changing Places toilet is a room equipped to allow people to use the toilet with assistance or have their continence pads changed. This room should include a toilet with space for a carer either side, an adult-sized height adjustable changing bench and a hoist.
MPs are currently being asked to show their support for the campaign by signing EDM 642, “CHANGING PLACES CAMPAIGN”, tabled on 16th January 2007 by Philip Davies MP.
To find out more and join Changing Places visit
www.changing-places.org--------------------------------------------------------------------------------------------------
We will not be silenced. Special needs families around the country want to be heard and are now demanding ACTION.
Ends
Available for interview:
(Photographs of women are attachments)
Six special women that are doing extraordinary things with their lives, to help families across the country, as a result of having special children:-
Alison Edwards: Telford, Shropshire
07788502154
Allison Edwards 43, a former model, is a wife and mother of two boys. Her youngest son Jonathon, age 9, was born the same day Tony Blair came to power on 2nd May 1997. Jonathon is severely autistic and still in nappies.
Fed up with the lack of changing facilities when out has prompted her to join Mencap as an avid campaigner for the changing places toilets campaign (
www.changing-places.org). Allison is fighting to free the lives of 250,000 disabled people and their carers; people who are often imprisoned in their homes ("life outside is at most two hours, the length of time in a nappy"). She has also been assiduously lobbying supermarkets to stock own brand larger trainer pants to meet the increasing need of the growing number of children with learning difficulties unable to use a loo. She is fighting for reform of the NHS policy, which shockingly supply ONLY 4 free nappies a day to the disabled.
Allison says: “I wouldn't want to put my bag down on a public loo floor, why on earth should I lay my precious son on one, with his head under the pan, ridiculous!”
Michelle Chambers: Leighton Buzzard
www.think1098.com07982 244 176
Michelle is 35, married to Lee and has three children, two of whom have special needs.
“Jade, my daughter, is of average intelligence but has a profound language impairment. Unlike able children Jade is unable to understand spoken or written language as a tool to communicate with the world she lives in. As a result she is frustrated and angered by her difficulties. Instead of understanding her needs, the local authority wrongly placed her in mainstream school where she was subjected to inappropriate physical restraint. It was then I first realised that teachers could restrain my child but that I did not have the right to know.”
Michelle says: “Effectively, along with my child, I also left my rights at the school gate. I am now campaigning to ensure that the law is changed; namely that if teachers have been given the right to restrain then, as her mother I must have the same right to know of it.”
Maria Hutchings (Organiser): Benfleet, Essex
07981 435 904
Maria Hutchings 45, is mother to four children. The plight of her special son John Paul, aged 12, was highlighted in the press in the run-up to the 2005 general election. Maria challenged Tony Blair on Channel 5’s Wright Stuff about the problems faced by special needs families across the country.
She has campaigned on a range of disability issues but particularly the right of parents to have real choice in the education of their special needs child.
Maria says: “ The purpose of this vigil is to give a voice to the hundreds of remarkable people I have been in contact with since I challenged Blair. At the vigil we also want to celebrate the tireless work of carers around the country, particularly special women on International Women’s Day.”
Debbie Lester: Lewisham
07900 577 208
Hello my name is Debbie. I'm 36 and married with five children. One of my boys (George) attends Brent Knoll special school. George has various conditions including 47XYY, ASD and absence seizures.
As a parent I have been campaigning tirelessly to stop the phasing out of our fantastic primary provision. There is no other facility of equal or better status than the one we already have at Brent Knoll. No other facility or inclusion unit has been up and running for years that could prove to parents/carers beyond all reasonable doubt that they will work for our children and the children of the future.
Our children need this early intervention and support.
Debbie says “Our children do not suddenly develop these conditions when they reach secondary age. They are born with these conditions and it is our duty as parents/carers to provide them with the best education and care that we possibly can. This is why I will continue to campaign now and in the future. Leave the vulnerable alone.”
Julie Maynard (Organiser): Ware, Hertfordshire
07795 576 360
Julie Maynard, 47, is married to Leslie Coombs. She has one child; Joshua aged 11 years, who is disabled with special needs.
As a result of her experiences with Essex LEA, including the closure of Joshua's special unit, resulting in Joshua needing to attend a special boarding school 75 miles from his home; Julie found herself embroiled in the Tribunal process. Her barrister Mr John Friel, encouraged Julie to study law, and as a result she has been representing parents in the SEN Tribunal voluntarily for over eight years. She has been a vocal critic of the current special educational needs policy having met with Ministers. She is among many others is seeking a change to the policy of inclusion which she views has become ideological and the law, which she considers favours local authorities to the detriment of our special children.
Julie says ‘If as a society we are failing our most vulnerable children namely those with disabilities, then it is evident we are failing all of our children. It is too easy to argue that the simple solution lies just in financial investment, It does not. It relies on treating people as individuals and not adopting ideological policies which equate to a ‘one glove fits all’ approach‘.
Sandy Row:
07768 772795
Sandy Row, 52, and her husband have four adopted children, all of whom it has transpired have Special Educational Needs; all are on the Autistic Spectrum
(Asperger’s Syndrome and Semantic Pragmatic Disorder). Some have ADHD, Dyslexia, Auditory Processing Disorder and Dyspraxia; all have Attachment Disorder as well. Sandy and her husband have battled for years to achieve accurate diagnoses, Statements and assistance for the children - fighting two Special Educational Needs Tribunals (SENDIST) against the LEA barristers on the way.
Having felt like 'a peashooter against a tank' Sandy wanted to share their story and the useful contacts and information they have gained during their journey. So as well as helping her own children she has written a book to assist other parents who are experiencing the same difficulties. ‘Surviving the Special Educational Needs System: How to be a Velvet Bulldozer', Jessica Kingsley Publishers. ISBN 1 84310 262 5
“International Women's Day is the story of ordinary women as makers of history”1
1 United Nations Department of Public Information--DPI/1878--January 1997
ENDS
Notes to Editors:
For further Information contact:
Organisers: Maria Hutchings 07981 435 904
Julie Maynard 07795 576 360
Labels: Special Women For Special Children - Vigil
