Funding is a big problem at present. If you feel you would like to contribute to this exciting and worth while project please send contributions to our Branch Treasurer specifying the money is for the video.
The Branch's annual open day has been fixed for Saturday 6th May and the Committee, who are all parents of a child with Down's syndrome, hope to meet you there especially if you have not come before. Whatever the age or ability of your child, you will find members who will be pleased to meet you and you will benefit from being amongst other parents. Relatives, friends and professionals are always welcome, too.
To mark 30 years of amazing progress, there will be a very brief break in the 'information' part of the programme. As an appreciation of the work of Rex Brinkworth MBE and the early members of the Association, we will share a cake in celebration of the DSA's formation (as the Down's Babies' Association) in May 1970.
MAY MEETING
Inside you will find the programme for our annual open day at which the speakers will provide a particularly broad and interesting programme. We know from last year that the school is welcoming and the creche and catering helpers warm and willing. Please send in your registration form as soon as you can to help them with numbers.
BRANCH VIDEO
Progress at last! A small group of Royal Holloway London University
students wish to make the video for us in June and students with Down's
syndrome at various Further Education Colleges will be the 'stars'. You,
your family and your school staff will then be able to see how young adults
with Down's syndrome benefit from and enjoy life in mainstream Colleges.
Funding is a big problem at present. If you feel you would like
to contribute to this exciting and worth while project please send contributions
to our Branch Treasurer specifying
the money is for the video.
If you can help with composing music the Committee would like to hear from you.
It is intended this first Branch video is completed to celebrate this Millennium year and the Association's 30th birthday.
YANNIS VIDEO
Yannis lives in Thessaloniki and has Down's syndrome. His sister,
Nicky, also Greek, studied in London and made a simply expressed little
animated video about the extra struggles her brother will have in life
- but he will succeed! Roger Quemby narrated.
This is possibly one of the least favourite tasks for all parents and so much more complicated when a child has a learning disability. Mrs. Rosemary Phelps is looking forward to sharing her expertise with us on 6th May. She is a solicitor recommended for this aspect of her work.
GROWING UP
As our children progress through school, worries about the future begin to loom. We are fortunate in having Sean McKibben to take us through many of the opportunities open to our young people as they become adults. Mr. McKibben has worked in Wandsworth and is now with Sutton Mencap. He will share his knowledge about adults with learning disabilities in occupation, accommodation and related aspects. Bring your questions to his workshop on 6th May.
TRANSITION AT AGE 16+
Moving on from familiar childhood surroundings to the adult world
requires much preparation when you have a learning disability, especially
Down's syndrome. Sutton Mencap are setting up a Transition Group to help
those aged 16 - 25 to achieve this "more comfortably". The sessions take
place from 18th April. Details 020 8647 8600.
DSRF RESEARCH
Participants are needed to continue a study which has already shown that there is increased DNA (cell) damage in children with Down's syndrome. The project will investigate DNA damage in children with Down's syndrome and examine the effectiveness of antioxidants in preventing this damage. If you have one or more children (including the one with Down's syndrome) aged between 2 and 14 and live in the London area, please contact the DSRF for more information. See TNI AND CUSTOMS (below). Please offer to help with this vital research.
TNI AND CUSTOMS
Many of our members have attended talks on targeted nutritional intervention and some have chosen to purchase food supplements from America or Canada as recommended by Nutri-Chem in Ottawa, The Warner House in Los Angeles or others. The Down's Syndrome Research Foundation, founded by Peter Elliott whose son has Down's syndrome, can advise on suppliers. Its address is 18 Daws Hill Lane, High Wycombe, Bucks, HP11 1PW, 01494 521826. DSRF is a registered charity and welcomes donations. Send A5 envelope for latest DSRF Newsletter and January 2000 research summary.
A parent in Dorset who purchases antioxidant formulae has been charged VAT and import duty on two out of three occasions. The first time she queried this with HM Customs & Excise and they gave a refund by return. The second time, however, they refused to give a refund and the mother appealed on the grounds that it was a medical treatment to help her disabled son, and items specifically manufactured for people with disabilities which aid their development are meant to be tax-exempt. The parent continued up the levels of appeal to the VAT Tribunal. After many discussions it was agreed that a letter from the child's doctor stating that, if the formulae were available on prescription, he would prescribe them, the VAT and duty would be refunded. The parent now holds a certificate exempting her from duty but not VAT.
If your child with Down's syndrome is aged between 12 and 20,
Dr. Steve Kelly wants to hear from you. He is at the Institute of Cognitive
Neuroscience, University College, London and is keen to set up a research
project which will lead to a better understanding of function in the brain
and how this relates to symptoms in Down's syndrome. The young person will
be asked to perform a variety of tasks such as recognising and naming different
emotions in faces, responding to items on a computer screen etc. which
s/he will probably enjoy. The testing will take place at Alexandra House,
17 Queen Square, London WC1N 3AR and last 2 - 3 hours with rest breaks
as necessary. Travel expenses will be reimbursed. You will be able to discuss
your child's performance if you wish. Participants will not be identified
in the published results. Please contact Dr. Kelly on 020 7391 1169 as
soon as possible.
HANNAH
Your editor recently met the grandparents of Hannah who is in a mainstream school in London. Shortly afterwards, a magazine entitled Right Start published photographs taken at her school. Hannah is shown kneading dough and the caption explains "Without realising it, she's discovering the properties of different materials as well as enjoying the texture of the dough. She's also developing her fine motor skills which will help with pencil control." Each of the other photos shows a busy happy child with an explanation of the benefits to the child of the particular activity. There is no reference to the fact that Hannah has Down's syndrome although this is apparent in the picture. Excellent integration!
SUNDAY EXPRESS
An Express reporter wished to write an article on the understanding of financial matters, such as bank accounts, insurance and mortgages, by people with learning difficulties. She spoke with your editor at some length during which time she said she believed she had never met anyone with a learning difficulty. She wondered whether being in a wheelchair meant a person had or had not a learning difficulty. She asked my son, Roger, how he managed his bank account and he commented on the patience of staff at the bank and in shops while he handles his money. The article, entitled "Banks must offer equality for all", was published on Sunday 9 January. I invited the reporter, Rachel Baird, to our parent information day in May (do make her welcome!) and hope she will also be invited to a People First 'speaking up' group.
TEACHING TIME
A DSA Liverpool Branch parent and Committee member outlines, in their January 2000 edition, ways in which our children can be encouraged to understand the passage of time. They need this understanding before they learn to tell the time. Emphasise instances which demonstrate lapsed time past and future: birthdays once a year, a favourite visit once a week, tell them each morning the day of the week (a card with a list of days and a clothes peg or bulldog clip moved down each morning is a visual and fun reminder and helps to teach pincer grip and word recognition). Use the card to remind of a regular weekly event; count using the card to show how many days before an anticipated activity. A cardboard plate, with 'hands' in a contrasting colour fixed with a paper fastener, help to teach the present time because it doesn't continue to change like the kitchen clock!
DSA EDUCATION CONFERENCE
A conference for professionals working with or supporting those
working with children with Down's syndrome in mainstream schools in the
UK is taking place on Friday 23rd June 9.30 - 4 at Tottenham, London N7.
Professor Sue Buckley from DownsEd will be giving the keynote speech followed
by an excellent choice of workshops. Cost only £35/head including
lunch. Book by 29th May (space limited). For full details and map contact
Ros Chislett (see Committee list or her email: rchislett@downs-syndrome.org.uk).
BRANCH LIBRARY
Remember, Mrs. Almrott holds on the Branch's behalf a stock of helpful books. For a booklist, consult either the DownsEd website or just ask Mrs. Almrott if she stocks what you want.
BRANCH WEBSITE
Ajit Mane writes: Please send me your ideas and material to include
on the website to improve it. There was a misprint in our address in the
last National Newsletter. Our correct address is below. For your convenience
a copy of the entire website is accessible also via the "mirror" addresses:
www.swthamesdsa.cwc.net
and
www.sw-thames.dsa.downsnet.org
Two of our neighbouring Branches are working to create websites for
their areas. This holds great potential to collaborate at London/Home Counties
level, complementing the National website to reach into our schools, care
professions as well as families. Mr. Mane has produced a poster:
What help is available for youngsters with Down's Syndrome? which is suitable
for schools, clinics, colleges or anywhere else we would like it to be
seen. Contact him (web.swthamesdsa@cwcom.net)
if you can use it.
JUST KIDS
The booklet being produced by DSA North East Thames is apparently nearly complete. Their newsletter EXTRA 21 thanks all the families who sent photographs of their youngsters of which 78 will be included. Ideal encouragement for new parents.
DSA FUNDRAISING
Golfers are invited to support the Frances Tipler Memorial Golf Day 2000 on Thursday 8th June at Hildenborough, Kent. Details from Jonathan Tipler 01732 740542 or 01732 369424.
Cyclists are invited to ride "a hero's ride from Hampton Court Palace to Hove", the Big H ride, on Sunday 2nd July. Details Jane Jaffe 020 8420 6834 or National Office.
SPORTS DAY
Each year we are invited to have a stall at the Downside & Hatchford Sports Day on Downside Common on August Bank Holiday Monday 10 am - 6 pm approx. Our Branch Secretary is willing to man a stall on Monday 28th August this year but will not be available beforehand to assemble goods and helpers. This is a good opportunity to publicise the DSA and work with two or three other families in the area. The Branch owns strong 7 ft DSA banners. Cakes and white elephant usually go down well, or even a sideshow. All profits will be for Branch funds. Do contact Mrs. Liz England to talk over whether this year our Association could have a presence - something useful to look forward to at the end of the school holidays.
Our children usually have very short legs. If their feet are not firmly on the floor, it will be extremely difficult to achieve fine finger control. (Next time you are perched on a bar stool, check this out for yourself!). Ensure a footstool or a lower chair is used.
POTTY TRAINING
An unexpected comment in an article on classical ballet in the DSA North East Thames Newsletter EXTRA 21 will interest many of our readers. The muscles needed to jump (demi plié) are those needed to achieve bladder control. Ballet is strongly recommended for all with Down's syndrome but if your child is not in a class but is being potty trained, encourage jumping vertically off the floor! The author, Alyson, writes: "The movement has to go through the feet, push up through the legs, then the tummy and bottom muscles need to be braced to sustain the jump." Alyson is on 020 7394 9036.
MERU
For many years the Medical Engineering Resources Unit has designed and made equipment to help children with every imaginable disability. Volunteer engineers and fundraisers give their time to this charity which has a record of remarkable achievements. MERU now has an interface centre which advises on the use of computers to assist children with independence. The purpose of the Interface Centre is "to put you and your child back In Control of the computer". MERU's field of service covers children in North Surrey and South West London although assistance with other organisations and projects is available too. For details tel. 020 8770 8284 or http://www.meru.co.uk
COMPUTER AIDS
The Down's Heart Group Autumn Newsletter describes two items which could be helpful: BigKeys Plus keyboard which has brightly coloured keys, one inch square, making them easy to see, find, read and press, and requires no setup software; KidsBall. an oversize mouse with a bright fun shape. DHG parent member, Alayne, offers further advice on 020 8891 1644. The Down's Heart Group is a national charity which offers advice and support to families whose child with Down's syndrome was born with a heart condition. National office 01525 220379.
Mrs. Jane Yos must be congratulated for ensuring members of this group are kept in touch with a regular newsletter as well as monthly meetings. Mrs. Yos reports on the West Sussex Parent Partnership Team which is extending its services to provide assistance to all parents of children with special educational needs regardless of SEN stage. Mrs. Yos is on tel. 01903 772339.
SUTTON CHILDCARE
The Sutton Childcare Information Centre in Times Square Shopping Centre, Sutton, Surrey, is holding two more Special Education Needs Drop Ins. Visit between 12.30 - 2.30 on Tuesdays 6th June or 18th July if you believe they can help you.
DSA SUTTON PARENT GROUP
The Sutton local Parent Group will meet next on Thursday 4th May at 8 pm. Telephone Pete and Val Morgan, 020 8644 5446 for the address.
EQUAL SCORE
This Club has been formed in Sutton by an adult with a
learning disability, Peter Elliott, to enable all who are keen on football
to meet (monthly in Wallington) and chat, watch videos and arrange trips
to matches. Details from Sean McKibben 020 8647 8600.
BALLET TREAT
Would your child, or your Group, like a trip to the ballet? Seats @ £1 are on offer (to DSA members and friends) at the Peacock Theatre, Sadler's Wells in the West End, for Thursday afternoon 18th May at 2.30 pm. The Last Battle, the last in the Narnia Chronicles by C.S. Lewis, is the title and strongly recommended. Enquiries to the London Children's Ballet 020 8969 1555, email info@londonchildrensballet.com
A MOVING EXPERIENCE
Eileen Beard reports: Following the success of the Larondina Dance
Company at both Her Majesty's and the Prince of Wales Theatres, alongside
stars from West End Musicals, all the members of both the Alessendre Special
Needs Dance School and the Larondina Dance Company put on two very successful
performances at The Royal Academy of Dancing, Battersea, on 11th and 12th
March. The title says it all - I doubt there were many dry eyes in the
audience! To quote from the programme: "What you see are unselfconscious
dancers striving their utmost to be the very best that they can be". Several
members of the South West Thames Branch have children involved in this
venture, and I am sure they would all agree that they have grown in confidence.
Many thanks to Angelina Alessendre for making it possible.
PHABSAIL
Apologies for giving the wrong telephone number in the October Newsletter. It should be 01932 352365 for sailing at Shepperton.
SAILING
A paragraph in Lines of Sight, the newsletter of the Surrey Voluntary Association for the Blind, reports that Farnham and District Sports Association for the Disabled offers sailing for visually impaired and those with other disabilities on Frensham Pond. Sailing takes place on Thursdays and Saturdays from May, between 10 am and 1.30 pm. Contact Mrs. J. Bonner 01252 793135.
AND ART
The SVAB Newsletter also mentions Creative Response, a provider of arts services for therapeutic reasons in Farnham. Tel. 01252 716876
WELLSPRING
Ros Chislett has received a magazine with many interesting snippets of information relating to disability in West Sussex. There are references to activities at the Cobnor Activities Centre Trust, Chichester, activity holidays with the Red Cross, the needs of parents who work and who have a child with a disability and Special Education at Chichester College. The Seven Sisters Country Park, Exceat, Seaford, Sussex, has a new Sports Project for East and West Sussex Disability. 'Trekkers' at this site offers hire of bikes and trikes for people with different disabilities. To be added to the circulation list write to The Editor, Wellspring, c/o 35 Worthing Road, East Preston, Littlehampton, West Sussex BN16 1BQ.
BRANCH FUN DAYS
Thanks again to the Everington family, Ros Chislett and others,
our second Fun Day and Fair was a great
success. Put the date, 4 November 2000, in your diary for Fun Day
III - you can still be home for fireworks in the evening! These are
'meet the family and have fun together' days, opportunities for your children
to meet other families who have a child with Down's syndrome, to try a
few simple challenge sideshows, watch an entertainer and for parents to
meet informally and chat. It is not a fundraising exercise but clearly
the Branch cannot afford that it makes a loss. Maidenbower is easy to reach
from all our Branch area and is an extensive modern development which is
interesting to visit.
Saturday 6 May Branch Open Day and AGM, Purley
3 - 9 June DSA Awareness Week
Thursday 8 June Frances Tipler Memorial Golf Day
Friday 23 June DSA Education Day, Haringey
Sunday 2 July Big H ride
Sunday 9 July Branch Committee meeting
Sunday 24 September Branch Committee meeting
Saturday 14 October DSA National AGM Ascot
Saturday 4 November Third Branch Fun Day and Fair
10.00 am Coffee and Registration
Numeracy and Literacy -those special hours |
|
Philip Eckstein, DSA fundraiser, will briefly describe his work.
12.30 to 1.45 Lunch
1.45 Happy 30th Birthday ! A brief presentation and cake
2.00 The Cranial Approach in the treatment of Down's Syndrome
Geoffrey Montague-Smith will describe treatments involving gentle manipulation
of the skull and how it is thought to benefit children with Down's Syndrome,
particularly in relation to glue ear and catarrh, poor skin tone and quality,
toungue shape, dentition, hearing, height and posture.
3.00 Making a Will
Rose Phelps will speak on leaving money to a family which includes
a child or adult with Down's Syndrome and describe the considerations which
should influence making a Will. She will give advice on discretionary trusts,
means tested help and inheritance tax.
4.00 The Internet
Ajit Mane, Alan Mayne and Paul Everington will demonstrate the Branch's
website.
AGENDA for Branch Annual General Meeting. 6th May 2000
at Christchurch Primary School, Montpelier Road, PURLEY (Surrey)
11.45 to 12.30