Readers are invited to consider volunteering to help with the management of downsyndrome OK. Increased family commitments have forced Karen Edmonds to resign as Hon. Treasurer and we are most grateful to her for the efficiency she has shown during the last four years. We are now in need of a volunteer Hon. Treasurer, which none of the current trustees is able to undertake. Please consider if you could assist by becoming Hon. Treasurer or would like to find out more about being a trustee by discussing what is involved with a current trustee before offering yourself for election on 12 May.
Last autumn, a request was circulated by DSA requesting donations to fund research into finding the best methods of exercise for people with Down's syndrome. dsOK trustees have decided to support this work and have offered £1,000 which we believe will benefit the children of many of our members as they grow up.
This former branch of the DSA, whose newsletter has provided many useful contributions to ours over the years, has now launched its website which promises also to be a valuable resource.
From time to time, fears of the possible dangerous behaviour of people with mental illness hit the headlines. These could mislead the public who may confuse mental illness with learning disability (previously mental handicap) but the two are different. People with learning difficulties are most unlikely to be a danger to society.
The Canterbury Oast Trust in Kent and East Sussex has been running catering establishments staffed by people with learning difficulties for years. This Trust also runs a Rare Breeds Farm which is open every day from 1 April until 30 September and offers a great day out for families. Part of the entry fee can be Gift Aided to support the work of this well established organisation.
For an explanation visit the Down's Syndrome Research Foundation website
www.dsrf.co.uk and read the February 2007 newsletter. As mentioned in dsOK news 12, volunteers are being sought for research into biochemistry and nutritional issues. Contact DSRF, 18 Daws Hill Lane, High Wycombe, Bucks, HP11 1PW.
The Bupa website could help readers to understand diseases, or explain the workings of the heart or lungs etc. to a young person. Click on an illness which has a coloured box beside it then click to start the animation.
The Channel 4 programme on 26 February took us into Foxes Academy in Minehead, Somerset. This hotel is staffed mainly by people with learning difficulties, many of whom have Down's syndrome. All are learning on the job for up to three years and many have returned home with the skills and confidence to enable them to hold down a job in the hotel/catering trade. Guests at the hotel include people with learning difficulties/disabilities, parents and relatives, and general public too. Following the programme, the Channel 4 website provided some helpful information.
A leaflet was enclosed with a Down's Syndrome Scotland newsletter offering books about learning disability. The list has been collected by the Scottish Consortium for Learning Disability of which DSScotland is a member. Books may only be borrowed within Scotland but could of course be available from our local libraries as well. The catalogue can be downloaded from their website. The website reports the result of a questionnaire to which 600 people with learning difficulties responded.
Helpful information relating to sex education may be found on the following websites. We have to remember that our youngster with Down's syndrome is unlikely to be able to ask questions to improve their understanding. They need and deserve detailed clarification, probably repeated as they grow. If they do not receive full explanations at their level, they could be vulnerable as their independence increases. Turn back to dsOK news No. 5 (October 2004) 'Sexuality Teaching' for practical ideas.
The Foundation for People with Learning Disabilities has been researching the needs of young people who are anxious about moving on from school and becoming adults. The result is reported in their newsletter, Foundation Stones, No. 13. It is hoped the Child and Adolescent Mental Health Services will take on board some of the suggestions made. For a copy contact the FDLP.
This quarterly magazine is for people concerned about the rights of people with learning difficulties and celebrates their achievements. It has been running for 20 years and can be obtained from The Elfrida Society, 34 Islington Park Street, London N1 1PX
DSA National Office advise that Richmond upon Thames Council for Voluntary Service has produced a video showing how volunteering in the community can increase confidence and independence whether or not the volunteer has any disability. It runs for 14 minutes and costs £5 plus p&p. Copies of
A Difference... Made can be obtained from Jed Wardley
020 8401 0069
jedw@richmondcvs.org.uk
It seems that people with Down's syndrome may show signs of ageing at a younger age than others who do not have Down's syndrome. A possible cause for this could be the making of free radicals on the extra chromosome. We all make free radicals. It is suggested that taking anti-oxidants could lessen their effect. Anti-oxidants are found in many fresh fruits and vegetables.
The organisation, Juice Plus, captures anti-oxidants and supplies them in capsules which are taken with glasses of water in addition to eating fruit and vegetables in the normal diet. The work is apparently endorsed by doctors and US health authorities. Your editor discussed the products and Down's syndrome with Dr. Mitre Ray PhD who gave to Mrs. Quemby a DVD relating to nutrition and disease.
An evening meeting has been set up by Maximizing and Achieving Potential in Special Needs which will enable parents/carers to meet the Commissioning Manager for Adult Services, Glen Mills, and the Transition Manager, Julie Pointer to discuss transition at 14+ and adult services. Even if your child is still quite young, action now could ensure better services when transition approaches. Wednesday 2 May 7.30 - 9.30 pm at the Kingstonian FC, The King's Club Room, Kingsmeadow, Jack Goodchild Way, 422A Kingston Road, Kingston KT1 3TB.
Di Lacey : 020 8241 4745
dianelacey@blueyonder.co.uk
The newly formed parent support group PSDS was pleased to welcome a new family as a result of the note in our January newsletter. Watch out for a Grandparents Day with BBQ in the summer!
The West Berkshire Downs Syndrome newsletter reports this website which apparently offers practical advice and has a chat room.
An organisation, Youthfirst, offers support and help for children who are experiencing being bullied. Visit the website to see the award winning board game some young people have invented and to find out about bully camps and other ideas.
We understand a DVD is being sent to all dental practices which it is recommended your dentist should view before treating your child or adult with Down's syndrome unless you have attended one of the talks by a dentist which dsOK and its predecessors has held.
An email has been received from a Wiltshire parent whose daughter with Down's syndrome was born in 1990 and is now at Yeovil College. Her mother, Vikki Horner, reports her efforts to improve the ability of her daughter with maths and the help she found to do this. Commendably, the daughter has passed Entry Level 1 GCSE maths. Ms Horner found the Structural Arithmetic approach first invented by mathematician, Dr Catherine Stern, and now offers advice and demonstrations to other parents, schools and associations. Contact Ms Horner at: Managing Director, Maths Extra Ltd., 3 North Street, Mere, Wiltshire, BA12 6HH
Sadly. we still hear of new parents being told badly of the news that their baby has Down's syndrome. Some of us may have watched the news being broken on Eastenders and hoped that the new parents would soon enjoy their baby just as parents reading this have learnt to do. A longstanding member was recently told by friends that they had been informed that their unborn baby was likely to have Down's syndrome. Where were they told? In a hospital corridor! A subsequent amniocentesis showed this to be wrong but clearly much training is still required for professionals who may have to bring unwelcome news.
The January 2007 newsletter of the West Berkshire Downs Syndrome Group reports that a talk has been arranged when members will be explaining to Paediatric Doctors about breaking the news to parents and the work of their group. We wish them every success with this positive step.
There could he a free nappy service available from your local authority for children over age 4.
The newsletter of the West Berkshire Downs Syndrome Group tells us the Lejeune Clinic is now known as The clinic for children with Down's syndrome. It is held in London (St. John's Wood) monthly on a Saturday morning. Leave your details on the answerphone. You may remember that Professor Jerome Lejeune is the scientist who discovered in 1948 in Paris that Down's syndrome is caused by an extra chromosome. Rex Brinkworth MBE, DSA founder, worked closely with him over some years.
020 7289 8141
A parent member, Gary Lawless, reports that Fulham FC is keen to teach children and adults with Down's syndrome to play football with the intention of forming a team with its own strip. There is a free session for adults and children every Friday between 5 - 6 pm in Wimbledon goals. Gary is a qualified coach and recommends that DSA/dsOK parents take this training, for which funding could be available.
Contact Susi Williams, Disability Development Officer for full details.
Scripture Union runs holidays with a religious flavour for teenagers with a school statement.
The lone parent helpline to assist lone parents with a child with additional needs has reopened.
The DSA London affiliate tells us that, on 17 - 19 May, dancers will be performing at the Arcola Theatre, London E8 2JD. The Love Spotters return to perform Cataplasia, a magical and poetically charged performance in which the audience can be actively engaged, the artists all having Down's syndrome or other special needs.
One week courses in music, dance, drama and theatre are offered at this centre in Godstone to young people aged 18 - 45 who have a physical or learning disability.
01883 744664
enquiries@orpheus.org.uk
Newcomers to our May Information Days could wonder what is planned for this part of the programme on 12 May. Informal chat with a trustee in the chair, leading topics such as education, health matters, adult issues and parenting or indeed another subject you feel would be helpful to you. Please tell a trustee beforehand or on the day.
