Bowling evening for 'Teens and Twenties' on Friday 23 February from 7 pm at the modern David Lloyd Centre, Bushey Road, Raynes Park, SW20 8DE.
Your sons and daughters aged 13 and over, with or without Down’s syndrome, are invited with their friends in the same age range, with or without learning difficulties.
dsOK is subsidising the basic outlay for this great opportunity for socialising so please note this in your diaries now. The attractive basket meal will cost you only £4.50 per head to be paid with your booking. Parents and carers not joining in will be able to watch from the comfort of the bar area and chat.
Contact trustee, Donna Self, to check details.
Our annual information day is fixed for Saturday 12 May and all readers are warmly invited. Talks will be informative, discussions will be valuable, and we will all benefit from the opportunity to meet other members and share ideas.
The programme will be sent to you in April but please note the date now. We have booked a modern school near Crawley for this meeting. There will be no charge for the crêche so please bring your children if you cannot make other arrangements for them.
We are indebted to Star Signs of Ewell and Chessington who put in hours of meticulous work to ensure we had bright, eyecatching dsOK banners to display at our Education Day on 18 November. Two were also used to direct you to the entrance for our dsOK party on 3 December. Parent groups wishing to use them should contact a trustee. The banners would be easy to post but cost a considerable sum to make.
This is now up and running and awaiting your entries!
Click here to visit the forum to contribute your ideas, questions, problems and good news!
The date for this year’s picnic in Tilgate Park, Crawley is Sunday 15th July. Previous picnics have been successful and greatly enjoyed by the families who have come. We usually bring our lunch, play games and enjoy the surroundings and facilities available in the Park.
Good to hear of the achievement of Dougal Leckie who has Down’s syndrome and has worked at the same care home in Chipstead for ten years. He is now one of the longest serving staff and enjoys keeping the home spick and span working eight hours per day for three days each week. Well done, Dougal!
Parent member, Richard Phillips, decided to invite donations to dsOK to celebrate his 40th birthday. He set an initial target of £1600, then £2400 then £3000 and actually achieved nearly £3,200. Wow!
A tremendous thank you to his generous family and friends. Most of the donors also signed Gift Aid forms and we were able to claim back a total of well over £700 through the Just giving website.
Members or friends raising funds by sponsorship are invited to consider using this really inspiring method. Please discuss the procedure with our Chairman or Treasurer.
We hear from the Down’s Syndrome Research Foundation that their Christmas newsletter is available to download from their website. It contains reviews of two Speech and Language DVD's from Woodbine House.
DSRF now has a facility at the new Science Centre in London for a Centre of Excellence for Down's syndrome, the first in the UK. It is headed by Professor Michael Crawford who leads the Institute of Brain Chemistry & Human Nutrition and the Mother & Child Clinic, both of which are based at the London Metropolitan University. The first project will be a new research initiative into biochemistry and nutritional issues in Down’s syndrome.
Volunteers who would like to take part should contact The Down’s Syndrome Research Foundation Ltd., 18 Daws Hill Lane, High Wycombe, Bucks, HP11 1PW, or via the website.
The tongues of many babies and children with Down's syndrome seem to be too large for their mouths. This is probably because the whole centre of the face seems to be narrow. However, thankfully, we rarely see a protruding tongue because the children have been taught to keep the tongue in. Usually a visual reminder will prompt the owner to tuck it away.
It is advisable to use only a sign, not pressure on the tongue as pressure can actually strengthen the tongue’s muscle and make it continue to push the tongue out. It is better not to touch the tongue as a finger could lead to infection being carried into the mouth.
During the years when DSA founder, Rex Brinkworth MBE, was studying Down's syndrome, he fixed his tongue outside his mouth for two days to see the effect. The tongue dried and fissures began to appear, emphasising the importance of encouraging our children to learn to keep their tongues in.
Many of our children with Down's syndrome could find their vision does not adapt quickly when they move from a darker space into bright light. Keep an eye when your child steps outside a door, as he or she might not see obstacles or changes in level.
A new group of parents (Help Education and Learning for Parents by Parents) has started for parents with children aged 10 - 17. It meets alternate Tuesday mornings at the Thornton Road Centre, Carshalton SM5 1NF.
Pete 020 8288 1039 or Karen 020 8286 2941
On 19 October 2006 more than one hundred people gathered in the Phoenix Centre, Roundshaw, in the London Borough of Sutton for an all day conference on learning disability. Top people from all Borough departments, members of all relevant organisations and many people with learning difficulties were present.
As well as excellent presentations, displays and networking extended the knowledge and understanding of the people we were all there to help and support. From them we learnt that they wish to work, have jobs like everyone else and that they wish to join clubs and activities with people without learning difficulties.
The two compères for the day each had learning difficulties, including Roger Quemby who has Down's syndrome. A sober thought at the start of the day was the statement that many with learning difficulties die young. A big challenge to improve the health of these fellow citizens.
Work has been taking place in twelve areas to check on the understanding in the health service of people with learning disabilities. A list of questions, or metrics, has been put to GPs and others. Results are detailed in Foundation Stones, newsletter No. 13 of the Foundation for People with Learning Disabilities (FPLD). Contact Alison Giraud-Saunders for more information.
Alison Giraud-Saunders on 07721 843290
agiraud-saunders@fpld.org.uk
A panel in the magazine of the Down’s Heart Group states the FPLD is asking for ideas from people with Down’s syndrome on their needs as they grow up.
Jill Davies on 020 8703 1141
jdavies@fpld.org.uk
Trustee, Donna Self reports: Jim Blair, Senior Lecturer in Learning Disabilities at St George's Hospital, Tooting, has set up a group, the aim of which is to improve the services for people with learning difficulties and their unpaid carers living in the Wandsworth area.
It involves meeting up for a couple of hours a month and travel and any care expenses will be paid. The group is about being active in making change happen, identifying priority areas for improvement and working with services to develop them - after all it is the carers who have the knowledge and expertise to make the services of the future better for people with learning difficulties or disabilities.
Once this group has been established it is hoped to expand throughout the south east. Similar groups have been very effective in changing services in other parts of the country.
Ursula Hawgood on 020 8725 3924
uhawgood@hscs.sgul.ac.uk
A request from the DSA October Bulletin: The Institute of Psychiatry wishes to check the levels of myo-inositol in the brains of children and adults with Down’s syndrome. It is thought this could affect the onset of Alzheimer’s disease in the future. For more information contact Dr. Fiona Macdiamid (Clinical research worker and Child Psychiatrist), Ms Anya Madden, PO 50, Institute of Psychiatry, King’s College London, De Crespigny Park, London SE5 8AF
020 7848 0939/0984
fiona.macdiamid@iop.kcl.ac.uk or anya.madden@iop.kcl.ac.uk
We have been invited to help with joint research between the Department of Linguistics, SOAS University of London and the Centre for Developmental Language Disorders & Cognitive Neuroscience University College London. Fifteen people with Down’s syndrome (standard trisomy 21) are required whose language ability and literacy level are at chronological age 11 onwards. Teacher, Marina Tsakiridou MA, will be carrying out the research for her PhD.
07792 437201
mt66@soas.ac.uk
This national charity has recently celebrated its 15th anniversary. It was set up to share specific information with parents whose baby was born with a heart defect and for all these years it has fulfilled its purpose well and will surely continue to do so. Its address is PO Box 4260, Dunstable, LU6 2ZT
Working with the Down’s Heart Group and others, the Department of Health has recently launched Adult Congenital Heart Disease, a new set of standards and recommendations. Copies can be obtained from their website.
DSA has now held a second Information Exchange Day for local groups and affiliates. Two dsOK trustees attended and found the two topics covered to be of great interest: Listening & Responding Skills and Working with Media. Further such days are planned. If members would like to contact dsOK trustees with suggestions for subjects or questions which could usefully be discussed or answered, please do so.
A pack has been produced by the Foundation for People with Learning Disabilities and the Alliance for Inclusive Education to assist with training Inclusion Assistants for schools. Contact Christine Burke for more information.
020 7803 1142
cburke@fpld.org.uk
Grateful thanks are due to kind members and friends who remember dsOK with contributions large and small, all of which enable dsOK trustees to increase understanding and support for families with a member with Down’s syndrome. Special thanks to Alexandra who made a commendable impromptu speech explaining how her mother’s special birthday had brought in more than £500. Thank you, too, to Mrs. Stewart and Mrs. Harrington for valued donations just before Christmas.
This request appeared in the October DSA Bulletin: A parent whose son (8) has the dual diagnosis of Down's syndrome and autism is planning to start a very small school in Surrey as no suitable placement has been found for him.
He makes significant progress when working with an experienced tutor who can engage his motivation to learn. DownsEd have agreed to be research partners in this venture to allow the expertise developed through the new school to be disseminated to other educational settings. Major tasks including fundraising have begun.
Parents of a child with dual diagnosis aged beteen 4 and 11, within a reasonable travelling distance of Guildford/Godalming, are invited to contact.
bronach@dominopartnership.co.uk
We are delighted to hear of a new group being formed to enable parents of a baby or young child with Down’s syndrome to meet other families. Meetings are on Saturdays, so as to ensure Mums and Dads and brothers and sisters will all be able to go along and meet others - so very important in these early months.
A lovely airy hall, with a fantastic play area outside, has been hired for the first Saturday of each month (second Saturday when a bank holiday weekend):
Lloyd Hall, Brickfield Road, Outwood, Redhill, RH1 5QX
MAPS, Maximizing and Achieving Potential in Special Needs, although based in Kingston, wishes to publicise that it welcomes parents and carers of a child with special needs/disabilities from Kingston and surrounding boroughs. The information provided is relevant to everyone.
info@mapschildren.org.uk
The newsletter of the West Berkshire Down’s Syndrome Group makes absorbing reading. Congratulations to them for working with their local hospital and creating packs suitable for parents who learn from tests it is likely their baby will have Down’s syndrome and for parents whose new baby has been born with Down’s syndrome.
The DSA Bulletin advises that ‘Stepping Stones’ has been set up in Hampshire by two mothers for parents and carers of children with Down’s syndrome. It will meet on Friday mornings at the Hart Neighbourhood Centre in Hook.
Sharon 01256 763033 or Emma 01252 664049
The Bedfordshire Down’s Syndrome Support Group offers a variety of activities for families and supporters with a youngster with Down’s syndrome.
Trustee Bambina Gonzalves tells of a really helpful website with information not only about aspects of education but resources which may be copied to help parents and professionals with teaching a youngster with Down’s syndrome.
A series of books available from Amazon to promote positive attitudes towards disability through understanding and awareness including
My Friend has Diabetes, Dyspraxia, Asthma and My Friend is Deaf.
Contact a family report that this publication gives a selection of inclusive games and activities by Di Murray to help promote inclusion in any play, holiday or child care setting.
Our attention has been drawn to a news item on the BBC website (24 January) which reports a poor standard of statementing by Surrey and some other authorities. The DfES has apparently demanded that more detailed information should be given in Statements of Special Educational Needs.
An enthusiastic letter has arrived from Professor Sue Buckley OBE at The Down Syndrome Educational Trust (DownsEd) calling for families with a youngster with Down’s syndrome to help with research into speech production issues faced by children and teenagers with Down’s syndrome.
Sue is delighted to be collaborating with an expert team at University College, London, and expects the research to take some years but to lead to insights into the children’s speech difficulties which will assist with the creation of better therapy programmes. The initial research will only involve a telephone interview. For subsequent studies, families will be invited to DownsEd at Portsmouth.
As many children (aged up to 18) as possible are required for this research, especially if your child is just starting to talk or is over age 3 and talking.
Please telephone Steve Davis. You will then be contacted to answer your questions and arrange a convenient time to proceed.
Steve Davis on 020 7679 5399
A DownsEd speaker emphasised the importance of not only displaying words and pictures for your child but also numbers with relevant illustrations. This reminds your editor that the times tables were attached to her kitchen cabinets when her children were young. The children enjoyed learning and reciting these!
We are advised by a member that this booklet has been produced by the Clear Communication People Ltd. We understand it is a fantastic resource to help you to produce your own daily planners, timetables, visual aids, writing with symbols etc. The booklet gives a step by step guide. It really can save you lots of time and help your child.
Cheeky-cherub sells educational toys for children of pre-school age and people with special needs at affordable prices. Cheeky-Cherub, 27 Wisbech Way, Hordle, Lymington, Hants., SO41 0YQ.
This website has been recommended by a trustee and appears to offer a remarkable variety of ideas and resources for inspiring children to want to learn. Free worksheets, lesson plans and teaching ideas for primary and elementary teachers may be downloaded (but you are asked first to read conditions of copyright).
This appears to be a stimulating idea to encourage pre-school children to be interested in learning to write. Many children with Down’s syndrome find learning to write quite difficult because muscles may be slack and fingers and thumbs short.
A parent member attended a brief demonstration by an Education Authority which has adopted it. Books and a helpful video/DVD/CD may be purchased. An early fun start as this method suggests could be beneficial. Visit the following websites for guidance:
A member has found a website which offers ideas for dyspraxic learners which is also helpful when teaching any child to write or improve their writing. The Teodorescu Perceptuo-Motor Programme can be found through Google. www.altonweb.com could be useful too.
You were invited in our newsletter No. 9 last February to complete a brief questionnaire on these benefits. We are pleased to report that our trustee, Karen Edmonds, with Jo Winsloe of Contact a family, attended in July a meeting at Westminster with Tom Brake MP for Carshalton & Wallington and Gillian Merron, Under Secretary of State for Transport. A review of the Blue Badge scheme began in 2002 and this was an important opportunity to discuss progress.
Karen and Jo were able to stress the importance of the Badge for families caring for children currently excluded from the scheme (including those with autism) and highlight difficulties and frustrations of parents. Extension of the scheme was requested to include families where two children have been awarded the lower rate mobility component of DLA, the link between DLA and the Blue Badge being crucial.
The Minister stated how timely the meeting had been and said the Department was ‘sympathetic’ to the needs and problems described. New guidelines were being drawn up and a full announcement could be expected by next spring. Karen and Jo thank all who sent in the questionnaire. Look out for the opportunity to comment on the new Blue Badge guidelines when they are issued in 2007.
The Bees Boccia Club meets at the Rainbow Centre, East Street, Epsom on Fridays 5 - 6.30 pm. Boccia is like bowls but played sitting on a chair (or wheelchair) and is fun.
Liz on 01372 275424
BocciaEE@aol.com
Wild Bunch offers training on Friday afternoons in Islington, London N1 for DJs who have learning difficulties. The present course ends in February
'Non-contact' boxing lessons are offered to people with Down's syndrome by Tony Cesay who runs Omnibus Kids Gloves, Beckton.
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On 10 December, some young people with Down’s syndrome had a fascinating experience courtesy the Express by Holiday Inn. This organisation generously provided venue, buffet and £150 to enable the production of a Cat’s Grin Drama session. The charity behind this event was Embassy of Man, management company of a number of Express by Holiday Inn hotels.
We hear those of our young people who were able to attend had a truly memorable day. Grateful thanks to organisers and staff for giving up their time to provide the fun.
Do you want to sell or give away equipment that is no longer used? Are you looking for equipment for your child? The ‘SID’ service is free, simple to use and does not require access to the internet. All the items advertised are in the Surrey area so you can find what you are looking for close to home.
Did you catch any of the BBC series of programmes under this title, made following interviews with several of our members, aired at 9.15 on the mornings of 11 - 15 December? 'A week of films exploring the process of parenting a disabled child from birth to independent adulthood'. We believe they will be used by the Open University but your editor missed them.
A request in the DSA Bulletin for January 2007 invites parents to take part in some research about the antenatal tests offered and information provided. To find out more, contact Manisha Sanghrajka. The research is funded by the University of Westminster. Manisha herself has 'a beautiful baby with Down’s syndrome'.
Manisha Sanghrajka: 01895 635 570 or 07956 472 78
The third party arranged by trustee, Janine Brewster and her extended family was yet again a great success. Thanks are due to everyone who contributed.
We have been informed of the following American website.
