ROMPA CATALOGUE
To Help or Not to Help?
We should generally help the elderly, we should not help stammerers, we feel we want to help those who are clearly physically or sensorily disabled, and we all like to feel needed by giving a hand. We have all come across wonderful characters who selflessly give their time and effort to others in spite of severe pain or disability and we all admire this. However, some disabled people grow up with the experience of everyone around helping them - and this environment can make them selfish and kill any desire for independence. Encouraging our youngsters to take their full part in family life, perhaps to join the Scout/Guide Movement or other organisations which teach caring for others, could ensure that they, too, learn the joy and satisfaction of helping others through life and not being always the recipients of handouts and good turns. Rex Brinkworth MBE, Association founder, reminded parents many years ago that the child with a disability who is not taught discipline has the added handicap of not knowing how to behave.
The programme is enclosed and we ask that you let us know in advance that you are coming. Note, too, that our friendly caterers need beforehand your choices if you would like to partake of the lunch they will supply.
BRANCH HON. SECRETARY
Sincere thanks to Maxine Hanson for taking on this important job last year. Unfortunately, her commitments make it impossible for her to continue and a new volunteer is urgently needed. Please talk to a Committee member if you would like to know what is involved. Jill Palgrave found an hour or two per week, plus attendance at our friendly Committee meetings, covered what was required. It would suit a member whose child with Down's syndrome is at school - but could perhaps be done by an understanding aunt or grandparent etc. An advantage is that you receive copies of newsletters from other Branches and organisations which make fascinating reading often to the benefit of your child and family.
BRANCH LIBRARY
Committee member, Mrs. Maggie Almrott, reports good use being made of our Branch Library. The stock is brought to our Branch meetings so do come prepared on Saturday 25th April to browse then borrow (or buy from National Office).
USBORNE OR DORMAN KINDERSLEY
These educational books are popular with many parents and particularly helpful to our slower learners. We are fortunate in having Branch members or friends who are prepared to run a stall at our meetings and donate the profits to our Branch.
NOVEMBER MEETINGS
Since the practice of holding Branch parent-information days began back in the early seventies, such open meetings have been held in May and November. Last year the May meeting moved to April. Occasionally (as in 1997) no November meeting has been arranged. Our Development Officer, Rosalind Chislett, has taken some of the work off the Committee by contacting possible speakers for the coming meeting but to run two meetings each year has been a heavy, although rewarding commitment for your volunteers. Committee members want to know what annual and half-yearly meetings members need and what you are able to support. Please tell us dates to avoid and topics which would be helpful to you, too! Should we arrange meetings for parents with children with special needs other than Down's syndrome?
EYE-CATCHING BANNERS
The Branch's first stock of 7 ft 6 in. DSA banners has been sold at cost (£32) to other Branches across the country and more are being purchased for use locally and nationally. Readers interested in details should speak to Maggie Almrott (see Committee list).
Our Branch Treasurer, Jim Cowie, warns every charity treasurer's dread - our funds are going down, not up! Parents and friends of the Branch - if you enjoy fundraising please see what you can do for our Branch - anything lawful and preferably fun will be great. If it spreads good information about the DSA that would be a most satisfactory bonus. We understand a firm of solicitors in Manchester has been busily filling Smartie tubes with coins - making 50p or more per tube for their local DSA Branch!
MONEY MATTERS
Two DSA Roadshows are planned for Branch Treasurers or anyone interested in becoming one, plus those who wish to improve their fundraising ability. Dates are 4th July in Leeds and 5th September in Bristol. Your editor has details and a booking form.
LONDON MARATHON
National Office want to hear from runners planning to raise funds for the DSA as they can offer shirts, help with publicity and an invitation to the post-race reception. They want to know, too, of any would-be runners who might want to join the DSA reserve list. You should make it clear to National Office if you intend your local Branch/Group to benefit from your run.
Sincere congratulations to Alexandra Phillips on achieving 5 GCSE passes at Norbury Manor High School last year. Well done, indeed. Alexandra has since written to the Branch to enclose a generous cheque from her local Church Women's Fellowship Group. Alexandra with Mum, Jackie, had given a talk all about Down's syndrome.
LOCAL PARENT GROUP/BRANCH?
Have you a local DSA parent group or branch which has not recently been publicised in this Branch Newsletter? Please inform the Editor - free publicity is available to you! In addition, Groups/branches registered with National Office receive their useful Bulletin and insurance cover for meetings. Known Groups in our area include:
Chichester Group contact via Martin Clack tel. 01243 781639.
Horsham & Crawley Group meet monthly in members' homes. Contact: Bruce Caldwell, Martyn Long Centre, 78 Crawley Road, Horsham, West Sussex RH12 4HN, tel. 01403 266966 or Rose Dickson tel. 01403 268025.
(also the non-DSA Galaxy Group in Horsham meets Monday afternoons in the Salvation Army Headquarters and helps parents with children with a variety of special needs. Contact: Rose Dickson as above.)
Kingston Group contact: Isobel Morland tel. 0181 541 0126
Redhill Group, alternate Wednesday mornings at the Methodist Church, Gloucester Road, Redhill. Contact: Natalie Thorpe tel. 01737 215654.
Sutton Group meet every eight weeks on Wednesday evenings in a member's home. Future dates: 29th April and 24th June. Contact: Suzanne Hayes tel. 0181 642 1045.
Worthing Group meets monthly for evening meetings in a member's home. Contact: Jane Yos, 29 Arlington Crescent, East Preston, Littlehampton, West Sussex, BN16 1DS, tel. 01903 772339.
Rosalind Graham is on hand if you wish to start or join a Group and cannot find one.
SCOTTISH BRANCHES
Any members planning to move to Scotland will be pleased to know the Scottish Down's Syndrome Association has a number of Branches. Give them a ring on 0131 313 4225 for a contact near your new home. There could be helpful information on education, etc. available from members too.
EILEEN FOWLER
Members in the southern area of our Branch will greatly miss Eileen Fowler who died suddenly this month. Eileen has been a steadfast DSA supporter over many years and the Branch sends condolences to Ray, daughter Kathy, and other members of the family.
Many readers will be aware that your Branch Committee is deeply concerned that the information and couselling available to pregnant mothers is too often negative and incomplete. An article was published in the Nursing Times February 5, Volume 93, No. 6 1997 by a parent. This article confirms our concerns and fears and can be seen in our Branch copy of the Winter 1997/98 Greater Manchester DSA Branch Newsletter.
The Winter 1997/98 Newsletter of the Greater Manchester DSA Branch also carries reprints of two articles published last year in national dailies. On 9th June the Daily Mail reported a breakthrough in ultrasound scan testing for Down's syndrome and on 28th September the Sunday Times questioned the ethics of a scan study in which the pregnant women were not told the results.
INCLUSION
'A Day for Inclusion' conference is to be held at Holme Pierrepont, Nottingham, Friday 15th May 9am - 4pm. This is the fourth annual event co-led by Jack Pearpoint and Marsha Forest who work world-wide to bring together Educational, Social and Health Services to the benefit of individuals with high level needs and disabilities. Person-centred tools and innovative approaches to facilitate inclusion and manage change will be described. The two leaders, Jack from Canada and Marsha from New York have extensive experience and relevant qualifications. Details tel. 01159 605071.
This "not for profit" company limited by guarantee is a user-led organisation to promote the empowerment of users of Community Care and Children's Services. The Network works to ensure users are involved in planning and monitoring services. For more information telephone 0181 541 9675 or write to PO Box 469A, Thames Ditton, Surrey, KT7 0BR.
KINGSTON FORUM
In response to a Government requirement, Kingston has set up a partnership with representatives from all those providing or using early years provision e.g. parents, pre-schools, childminders etc. as well as councillors and officers. The Kingston early years Forum will work alongside this and is in need of two parents who live in the Royal Borough and have children 0 - 8. Please ring Gill Murchie on 0181 942 0616 for more details about the Partnership and Forum.
Training for Playwork and for Early Years Workers is offered in the Partnership Newsletter and advice sessions are listed under Kingston Early Years Information Service (tel. 0181 547 6582).
BABIES FOR RESEARCH
The Portsmouth Down's Syndrome Trust (now DownsEd) needs
babies with Down's syndrome under 18 months of age for two research studies,
one on cognitive and social development in infancy and one on sleep and
the prevention of sleep disturbance (with colleagues in Oxford). Readers
will remember a helpful talk on interrupted sleep (apnoea) at a past Branch
meeting in Leatherhead - it is good to know this problem is being studied
further. Professor (and parent) Sue Buckley promises families who take
part will benefit from the support available at DownsEd - this internationally
renowned centre on Down's syndrome. Please contact Sue if your baby is
of the required age and you are within 50 miles of Oxford or Portsmouth.
tel. 01705 824261. (Open to non-members).
VISUAL AND COGNITIVE DEVELOPMENT
The report of a talk by Dr. Margaret Woodhouse, given at the Down's Heart Group Annual Conference in Cardiff in April 1997, shows that the development of the eyesight of babies and young children with Down's syndrome seem to follow the normal pattern until about age 2 - 3. Growing out of refractive errors and the improvement in near vision and focussing to adult standards, which then occurs in children who do not have Down's syndrome, seems to stop in those who have.
The research being conducted by Dr. Woodhouse is also comparing the cognitive development levels in the 70+ children in her longterm study. Not surprisingly, these levels seem to drop off at the time improved visual acuity is no longer developing in the children with Down's syndrome. We can only hope that this knowledge, whilst encouraging us to ensure we arrange for our young children to have annual eye tests, will eventually lead to the cause being discovered and perhaps better treatment than glasses being found.
Dr. Woodhouse states "It is perfectly possible to measure spectacle prescriptions, detail vision and near vision in children no matter what their developmental level, and no matter whether they are able to talk and to read or not".
Committee member, Rashne Everington, has visited a specialist clinic, The Warner House, in Los Angeles and contributes detailed information for this Newsletter. Her one year old daughter is following the plan which is based on studies over 25 years which show that in Down's syndrome free radicals 'run wild'. A gene on the extra chromosome causes too many free radicals for the number of available electrons. Antioxidants lessen the destructive effects of the free radicals.
The consultant, Dr. Warner and his team will be running a clinic in London between 31st May and 6th June. This is being co-ordinated by a lady called Caron Fien on 0171 824 8142.
DOWN'S HEART VIDEO
The national charity, the Down's Heart Group, proudly announce their video which we hear is of the highest standard. Branch members who were present at our Kingswood meeting will remember how clearly the DHG speakers described heart conditions common in Down's syndrome. The video includes this information as well as members' children happily playing and it follows a family through diagnosis and pre- and post-operative care. It lasts just under 30 minutes and will be available from our Branch Library.
The Down's Heart Group has trained some of its members to be visitors at cardiac units to support new parents during their baby's treatment. The Down's Heart Group National Administrator is Penny Green, 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA tel. 01525 220379.
DOWN'S HEART GROUP CONFERENCE
The Annual Conference on Saturday 9th May this year returns to Leicester where the Group began ten years ago. DHG members will be receiving details in April. Any reader needing information should contact Penny Green above.
A letter from a member whose daughter with Down's syndrome is now 10 describes advantages of skilful aromatherapy. Mrs. M. Weller, from Crawley, has qualified in anatomy, physiology, aromatherapy and massage and is certain the treatment she has been able to give her daughter has improved many aspects which were previously causes for concern including chronic constipation, respiratory and sinus congestion, skin quality, circulation, muscle tone, communication and self-esteem. Mrs. Waller adds that her daughter is also an excellent massseuse. Where there are severe cardio-vascular problems, massage is not recommended. Mrs. Weller Dip.ITEC.MGICP. is willing to advise parents/carers and professionals: tel. 01293 519481.
CRANIAL OSTEOPATHY
A speaker, Chris Harris, at the Down's Heart Group Annual Conference in Cardiff in April 1997 described the effect of birth on any baby's skull. The skull is designed to 'bend and warp' as the baby descends the birth canal and usually 'unmoulds' during the days following its arrival. Where this does not happen, the baby can suffer such problems as constant crying, feeding difficulties, sleep disturbance, breathing and sinus problems etc. because of the pressures its brain or nervous system etc. is enduring. Four to six short treatments for babies with Down's syndrome are recommended to correct any complications which could be caused by retained moulding. Although this gentle osteopathy should take place as young as possible, Chris Harris advised that it is still possible to achieve beneficial release of stresses throughout life.
STRATHCONA TRAINING COURSE
The Strathcona Theatre Company is running a professional theatre training course from 20th April 1998 for eleven weeks, ending 3rd July, at Willesden Green. For details ring 0171 403 9316.
This Council-run club is for young people (age 6 - 16) with special
needs and their friends and meets Saturdays 1.30 - 3 at Davison Leisure
Centre, Selborne Road, Worthing. Details tel. Ray Page on Worthing 503858.
SPREAD
The Surrey Sports and Recreation Association (SPREAD) was recently launched to encourage anyone with a disability to take part in sport. The charity has a range of member organisations: Reach Out at 55 Elm Road, New Malden (0181 949 7706), Epsom and Ewell Puffins, 53 Fairfax Avenue, Ewell (0181 393 9477) and Dorincourt (part of the Queen Elizabeth Foundation) at Oaklawn Road, Leatherhead (01372 842596). For general details tel. 01276 857113.
WATER SKIING
A member recommends sessions run by the British Disabled Water Ski Association at Heron Lake, near Staines, and other centres around the country. Helpers, instructors and drivers are unpaid volunteer members donating their time and skills for the benefit of the B.D.W.S.A. A Novice Day course costs about £12. All equipment is provided - the skier only needs a change of warm clothes, towel and swimwear. Details Adaline Fahey 01784 483664.
The 1998 leaflet about the Exmoor Centre at Wistlandpound near
Ilfracombe states "A Truly Superb Place for Disabled People Their Families
and Friends - its what you can do that counts not what you can't do" and
illustrates a wide variety of activities with a choice of accommodation.
For details tel. 01598 763221. The Calvert Trust has a wealth of experience
gained over 20 years, its older Centres being at Keswick (tel. 01768 772254)
and Kielder (tel. 01434 250232).
ROMPA CATALOGUE
The Branch has received this 132 page colourful catalogue which contains almost every item of play, stimulation and games equipment imaginable. There is even a cleaning machine for ballpools. Rompa specialise in supplying people with learning disabilities, the elderly and those with severe sensory limitations. The catalogue will be placed in the Branch Library. For your own copy tel. 0800 056 2323.
TEENS CONFERENCE
Greater Manchester DSA are planning a conference at Salford University
on 20th June 1998. Teenage issues for young adults with Down's syndrome
will be covered by Professors Sue Buckley and Ben Sachs of DownsEd (previously
the Portsmouth Down's Syndrome Trust). For the teenagers themselves, their
special programme will include ten pin bowling and a bite at McDonalds.
For details contact Branch Hon. Secretary: Diana Stray 0161 862 9230 (tel.
and fax) or http://members.aol.com/GMDSA/index.html or email GMDSA@aol.com.
WORTHING WELCOME
The Welcome In's Thursday Club is designed to be a safe environment for young people, especially those with learning difficulties or disabilities. Open 7 - 10 Thursdays, cost 50p (including refreshments), age limit 15+, held at the Salvation Army at 11 Crescent Road, Worthing. The winter programme lists alternating discos and games nights. For details ring Alastair or Sarah on Worthing 234497.
PEOPLE FIRST
This world wide organisation is run by people with learning difficulties
and has 'speaking up' groups in most London Boroughs and across our Branch
area. Roger Quemby (with support worker, Lou), is now the Sutton Project
Worker. He arranges meetings at the Civic Centre and organises transport
for those who are unable to travel by themselves. He leads the fortnightly
'speaking up' group for members to "talk about jobs, money, day centres,
television, staff and to say what they think about things and about getting
their parents, carers and staff to understand who they are and what they
want. Sometimes members go out together to the cinema or for a burger."
To find out the contact for your local People First ring Head Office at
Kings Cross 0171 713 6400.
SHAW TRUST SUPPORT FOR EMPLOYEES
For more than ten years this charity has provided practical support for those with disabilities who work but who cannot earn a living wage because of their limitations. The organisation has spread from its small Wiltshire village to a network of 200 staff who provide training and seek work and work experience nationwide. It is a charity which enables people with disabilities and mental health problems to maximise their potential in work opportunities. It is currently working in partnership with over 2,000 companies to support people with disabilities in employment. Shaw Trust, Shaw House, Epsom Square, White Horse Business Park, Trowbridge, Wiltshire BA14 0XJ. tel. 01225 716300. Home Counties and Southern contact: 0171 633 9889.
AUTISTIC SPECTRUM DISORDER
In the Down's Heart Group Spring 1998 Newsletter, parent Wendy Tucker writes of the need for medical professionals to understand this aspect of some people with Down's syndrome. She also reports on a "Grown Up Congenital Heart Clinic" which promises positive help for adults with Down's syndrome and an inoperable heart condition. Mrs. Tucker is the DHG Representative for those with Chronic Cardiac Conditions and is at 203 Windsor Road, Carlton-in-Lindrick, Worksop, Notts, S81 9DH. tel. 01909 731911.
INFANTILE SPASMS
A parent member in Godalming asks whether any other members have a child with a type of epilepsy known as Infantile Spasms, akin to West Syndrome/hypsarrhythrina. If you have experience of this, please contact John and Sarah Illingworth 01483 422606. Their daughter is 2¸.
GENES AND YOU
Created by the Genetic Interest Group and published in 1997 by The Wellcome Trust, this loose-leaf A4 binder contains nearly 200 pages for Cross-Curricular activities for Key Stage 4. It aims to teach about genetics from a human perspective and covers many well-known and many rare genetic conditions. Mrs. Quemby and Roger contributed on Down's syndrome. Genes and You will be at Leatherhead on 25th April.
SIGN BOOKS AND VIDEOS
London Borough of Sutton Library published in August 1997 a leaflet listing books and videos on sign language, lip reading and Makaton. More than 30 items are described.
The Scottish Down's Syndrome Association News, Winter edition, includes a paragraph describing a computer program called Widget which contains simple signs which can help people with learning disabilities understand written material. For information, contact Widget direct at 102 Radford Road, Leamington Spa, Warwickshire CV31 1LF Tel. 01926 885303. (It would be interesting to hear from any member who tries this - Ed.).
TELL YOUR LIBRARY!
When next in your local Library, check whether they have information about the DSA and, if not, or if it is out-of-date, offer to provide this. If you need help, contact Rosalind Chislett, our enthusiastic Development Officer. Ros recently reported to the Branch Committee that she has been shocked how few Teaching Hospitals know about the DSA. Ros is working to improve the situation and would like members' help with contacting local Libraries.
A paragraph in the Merton Mencap Newsletter September/October 1997 states that not all Council Tax officers are aware of the 25% Carer's Discount where the carer is caring for a disabled person in their own home. The disabled person has to be receiving the higher rate of Disability Living Allowance Care Component or higher rate Attendance Allowance. The disabled person must be over 18 and not the spouse or partner of the carer. The care must be for a minimum of 35 hours per week. To qualify for a 50% discount it must be shown that two people care for a minimum of 35 hours per week. The conditions are set out in Statutory Instrument 552/92.
SUTTON MENCAP
Perseverence and dedication have resulted in the opening of a first class headquarters for Sutton Mencap at 8 Stanley Park Road, Wallington - close to shops, buses and station. There are play areas for after school and holidays clubs, for both energetic and quiet activities, meeting rooms and lounges for adults, small offices, kitchens, indeed everything to make this an attractive and useful centre for Mencap and related projects in Sutton Borough. Enquiries about hiring accommodation for children or adults, or just to ask for a tour of these spacious premises, ring 0181 647 8600.
WAVING NOT DROWNING
This newsletter is written by and for Working Parents of Disabled Children. The experiences of parents seeking paid work, voluntary jobs and education are described in this attractive A3 publication - issue No. 5 - which is offered free by Janet Mearns, Waving not drowning, PARENTS AT WORK, 45 Beech Street, London EC2Y 8AD, tel. 0171 628 3565. Janet offers a helpline Wednesdays to Fridays 9 - 5 on 0171 588 0802. Send an A5 envelope for a Workplace Groups booklet.
A problem experienced by most parents with children in school, the Kingston Partnership Newsletter suggests an alternative treatment: "an excellent preventative synergistic blend comprising equal parts of Rosemary, Lavender and Lemon Essential Oils - blend together in a brown glass (not plastic) bottle (a brown bottle prevents the oils from becoming damaged by heat and direct light). Rosemary discourages all manner of creepy crawlies from making their homes in hair and Lavender is a well-established insect repellent. Add two drops of this blend to the final rinse after shampooing. Use spasmodically as a preventative measure. Wash immediately with cold water if any solution enters the eyes." The article suggests contacting Allyson Davies on 0181 336 2761 for more information. Daily vigorous brushing of the hair can break the legs of the lice which prevents them from laying eggs (nits) - Ed.).
DATES FOR YOUR DIARY
Saturday 25th April Branch Information Day and AGM Leatherhead
Saturday 9th May National Forum Birmingham
Saturday 9th May Down's Heart Group Annual Conference Leicester
Sunday 31st May Branch Committee Meeting
6th - 13th June Awareness Week
Saturday 13th June DSA Under 5's Conference Nottingham
Saturday 24th October DSA National AGM
Saturday 24th April 1999 Branch Information Day and AGM
ALBERT HALL CONCERT
A rock concert to be staged by the DSA in June will now take place later in the year.