Newletter no.35, March 1999

This is the version edited for web use. Apologies for less than complete presentation here. DSA branch members get a printed version from us. Your contributions, comments, letters are most definitely welcome. Contact the Editor
|  Back to Index  | Homepage 

Dear Parents and Friends,   I must start this edition with the sad news that our founder, Rex Brinkworth MBE, died last October after a long illness. He devoted countless hours to improving babies with Down's syndrome and those of us who were new parents around 30 years ago will be forever grateful for his research and advice for the benefit of our children. Information from medical professionals was almost entirely unhelpful and children with Down's syndrome were generally looked upon as ineducable. We send to his family our sincere condolences in their great loss.  Editor

The Branch Information Days are ideal for meeting others and sharing experiences. It is hoped all Branch members will endeavour to come to Purley on 24 April 10 - 4. There will be a creche and you can order lunch. Please register beforehand. The first topic is important to all of us. An experienced dentist, Bernard Crocker, will guide us on the care of the teeth of our children with Down's syndrome. Why not invite your child's dentist to attend. Longstanding friend of the Branch, Dr. Olwen Wilson, will help us in her warm and practical way with the behaviour problems which sometimes seem to be so much more of a problem than with other people's children. The two workshops at 3pm will cover Homoeopathy and People First. The video of the Down to Earth Group (adult members of the DSA) will be shown.

PENFRIENDS

Our enthusiastic Development Officer, Ros Chislett, is looking for penfriends (on paper or audio tape) who have Down's syndrome and are over age 16. Please contact Ros (see back page) if you or your son or daughter is interested in being put in touch with others. Funding towards postage has already been offered. This is a pilot scheme for South East England.

HOMOEOPATHY AUDIT

We look forward to welcoming Sue Brooks, past DSA Director (1986-90), now a homoeopathic practitioner, at our Branch meeting on 24 April. Sue will discuss the results of her DSA-approved research audit into the use of homoeopathic remedies with children and young adults with Down's syndrome to which many DSA members contributed. Sue's article in the DSA Newsletter Winter 1998 will have whetted your appetite for more details.

HON. TREASURER

Jim Cowie has been doing an excellent job on behalf of the Branch for three years and he does not wish to continue. If this is something you or a friend or relative could do, please give Jim a ring to discuss the amount of work involved. It is really very little but is vital for the Branch.

BRANCH VIDEO

Work continues and Committee members will be pleased to receive comments and suggestions. Is there a location with a child or adult with Down's syndrome which would make a good scene for filming? Funding is still needed. Bring your ideas to our April meeting at Purley.

ROWNTREE FOUNDATION

The Joseph Rowntree Foundation researches accommodation for adults with special needs. Details on their website: http://www.jrf.org.uk or tel. Publications Office on 01904 615905.

Housing

Sutton Mencap recently held an evening on this vital but worrying subject. Speakers from providers of housing for adults with learning difficulties offered ideas which parents could follow up as required. (1) KeyRing Living Support Networks arrange 8 - 10 flats around a part-time KeyRing worker, all within walking distance of each other. Rent is paid to the Council or Housing Association but the adults are able to make friends and offer neighbourly help to each other and call on the services of the part-time worker. KeyRing Living Support Networks, 128-130 Curtain Road, London EC2A 3AR tel. 0171 739 1011 (a registered charity supported by the Joseph Rowntree Foundation). (2) Local Councils are now understanding the need for adults who are ready for independence to qualify for points for suitable Local Authority housing even if they are still at home with parents. (3) Golden Lane Housing provide advice and create housing, for rent or purchase, for people with a learning disability 'around which they can build their own life'. Golden Lane Housing (working in partnership with Mencap), 123 Golden Lane, London EC1Y 0RT, tel. 0171 696 6902. (4) Housing Associations may offer self-contained flats either on their own or in blocks with others, all for adults with learning disabilities or other needs. Housing Associations may also offer accommodation in group homes. There could be a lower age limit. An adult leaving home may live for a time in a group home before feeling sufficiently confident to move into smaller or self-contained accommodation. We must not assume nowadays that our son or daughter will remain for ever in the home into which we see them move. It was apparent throughout the talks that there is at present little available for adults in need of full-time care or supervision except that a self-contained flat or small group home could be arranged to include a live-in carer. Walsingham Community Homes were not speakers at the Sutton Mencap evening but do provide registered care homes with 24 hour staffing.

HOUSING DIRECTORY

The London Borough of Sutton produces an attractive 56 page booklet entitled: CARE SERVICES FOR ADULTS AND DIRECTORY OF RESIDENTIAL AND NURSING HOMES. This includes lists of registered accommodation for adults with learning disabilities although it does not state the amount of care on offer at each address. However, it does provide a list of suggested questions to help in making a choice. Sutton has a Supported Living Team whose members visit adults with learning disabilities who are living where there is no residential support. Many of the houses the SLT visits are not listed in this booklet as they are not "registered". Registration of a home brings restrictions which may not be suitable for the more independent adult with a learning difficulty. The Health Service and Social Services have created this publication which should be available in Libraries and Clinics. It is probable such publications are available in all Local Authority and Health areas.

NEXTSTEP HOUSING

Although not specifically for adults with learning difficulties, Reigate & Banstead have a scheme to assist those on low income into rented accommodation. Social Services and Reigate and Redhill YMCA are associated with this project. Details: Janet Ormerod tel. 01737 773089.

GATEWAY AWARD

The Gateway Award is now well established and is open to all who would find the Duke of Edinburgh Award Scheme too demanding. Indeed, you can start the Gateway Award from age 12 and continue throughout life. For young people with learning or other disabilities this could provide the targets, the confidence and many of the leadership and social skills developed by the Duke of Edinburgh Award Scheme but at a slower pace. Both Awards are primarily intended to encourage worthwhile use of leisure time. If you have already achieved some parts of the Duke of Edinburgh Award, you can transfer to the Gateway Award and continue. Training for both Awards runs in parallel in some areas.

The Gateway Award offers an attractive handbook for ±15.95 which explains the requirements for Bronze, Silver and Gold level Awards. The five sections to be fulfilled for each level are: Hobbies, Service, Adventure Challenge, Physical Recreation and Design for Living. Apart from the Adventure Challenge, for which you will need companions, you can work alone or in a 'work', 'residential' or 'social' group. Even a parent can be your supervisor. You do not have to be a member of a Gateway Club. Send for your Personal Record Book when you wish to start. This costs ±5 and entitles you to support from the Award office, Gateway newsletters and the badges and certificates you earn as you progress.

Contact: The Gateway Award, East View House, Sutton Coldfield, West Midlands, B72 1HX tel. 0121 321 1409. (NB Many young people with learning disabilities have completed parts or all of the Duke of Edinburgh Award Scheme).

FACTSHEETS ON SIGHT CARE

A study in 1996 showed that 40% of people with learning disabilities had sight problems and a 1998 study found that many aged over 19 did not have regular sight tests or had had none. Yet the more disabled the person, the more likely he or she is to have a visual impairment. The RNIB has produced a series of Focus Factsheets for parents, carers and professionals to assist with information on how to test, how to encourage the wearing of glasses if found necessary and generally to improve the care of the eyes of adults with learning disabilities. Optometrists/opticians do not just establish if people need glasses, they also provide an eye health check to discover if people have infections or sight-threatening conditions. Send for Focus Factsheet "Access to eye care for adults with learning difficulties": Information & Practice Development Officer, Royal National Institute for the Blind, 224 Great Portland Street, London W1N 6AA tel. 0171 388 1266 ext. 2049. RNIB also offer a comprehensive Access to hearing care pack.

DSRF CONFERENCE

The Down's Syndrome Research Foundation has arranged a conference for Saturday 10 April at the Institute of Child Health, 30 Guildford Street, London WC1, 12.30 - 5. The programme includes an American presentation on teaching reading by the new Phono-graphix method, and information on the essential research on Elevated Oxidative Stress in Down's syndrome: "Downs syndrome is not a part of your child's personality, it is a life long genetic disturbance that results in injury to your child's brain. This can be seen in the form of damaged areas of brain tissue." Medical Research is vital.
Send s.a.e. to the DSRF, 18 Daws Hill Lane, High Wycombe, Bucks HP11 1PW for booking form and programme. The Foundation is advertising for an experienced professional fundraiser. 01494 521 826.

DSRF BRANCHES

Contact Leo Falkenberg Boas (0181 668 4860) about the London Southwest Branch or Laura Catling (01825 740 457) for details of the Surrey Branch. Only a few others exist at present.

MEDICAL RESEARCH

Following the request in our last Branch Newsletter for thirty children (aged 2 - 14) and siblings for a very important study initiated by the Down's Syndrome Research Foundation, volunteers are still needed. This project has now been changed to make it easier for parents to offer their children. Urine instead of blood samples will be used and siblings without Down's syndrome are not needed. There will be no travelling for the families involved. For full details please phone Peter (01494 521 826) or Leo (0181 668 4860) - as soon as you can.

MEDICAL HEALTH CONFERENCES

Children, the Family and Grief, a mental health afternoon seminar on Tuesday 16 March; Attention Deficit Disorder, a mental health afternoon seminar on Friday 26 March, both in central London; Autism: DNA to day-to-day living, on Thursday, Friday, 10 and 11 June, Tooting. For full details of these and other Conferences: Mole Conferences, 26 Church Road, Portslade, Brighton BN41 1LA, tel: 01273 242 634 (fax 01273 235 095).

SURREY INFORMATION DAY

ALL TOGETHER BETTER? is the title of an information day for parents about inclusion of children with special educational needs in mainstream schools in Surrey. This will take place from 9.30 - 4 on Saturday 20 March at Guildford College, Guildford. Details from: Partnership with Parents, Furzefield Primary School, Delabole Road, Merstham, Surrey RH1 3PA tel: 01737 646227 (fax 01737 646263).

SUTTON CONFERENCE

Sutton People First are holding a conference for adults (16+) with learning difficulties and their supporters on Friday 23 April at Strawberry Lodge, Strawberry Lane, Carshalton 10.30 - 3. The theme is Adults with Learning Difficulties Becoming Independent. There will be speakers, workshops, refreshments and some free transport. Details from: Roger Quemby PEOPLE FIRST 0171 713 6400, 207-215 Kings Cross Road, London WC1X 9DB. This is also the contact address for locating your nearest PEOPLE FIRST self-advocacy group.

DOWN'S HEART GROUP

This national charity's Annual Conference will be on Saturday 24 April (which will clash with our Branch information day) at the Sarah Duffen Centre, Portsmouth. Details (non-members send s.a.e.): Penny Green, 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA, tel. 01525 220379. In May or June a meeting is planned for families whose child has a chronic cardiac condition. As a result of their excellent video: Heart Problems in Children with Down's Syndrome, the number of new members in the first half of 1998 exceeded the total of new members for 1997!

ORCHARD HILL COLLEGE

Their impressive and practical prospectus states: Any person with profound/severe learning difficulties and/or disabilities over nine years old can apply. A visit is recommended. Cheerful photographs captioned "Learning to communicate", "Learning to operate the computer" and "Learning independent mobility skills" feature on the cover. To obtain your copy contact The Principal, Orchard Hill College of Further Education, 6 Elm Avenue, Orchard Hill, Fountain Drive, Carshalton, Surrey, SM5 4NR, tel. 0181 770 8125 (fax 0181 642 3763).

HANDI-READ

Past Branch Newsletters have mentioned this helpful registered charity which provides reading matter relevant to the age of children up to 16 whose reading ability is limited by physical or mental impairment. It was founded in 1985 and is now based at Ash Court, Rose Street, Wokingham, Berkshire, RG11 1XS. tel. 01734 891101 (fax 01734 790989). Send s.a.e for their leaflet.

WHY CHILDREN CAN'T READ

The recommendations made in this Penguin book by Diane McGuinness will be explained at the DSRF Conference on 10 April described above. It is claimed the system brings children up to their proper level even if they are not reading at all.

STATEMENTING

The DSA has just produced a 12 page A5 booklet to guide parents of children with Down's syndrome. A free copy will be enclosed with the next National Newsletter.

SOFTWARE SUPPLIERS

Much software available in the High Street may prove unsuitable for children and young people with special educational needs. National Office holds an A4 list of companies which specialise in quality educational software. Some suppliers may even offer a 'try before you buy' scheme. Send DL size s.a.e.

FUN SPORTS DAY

Sutton's second Participation Day for adults with learning difficulties will take place on Friday 19 March 10 - 3.30 at Westcroft Leisure Centre, Carshalton. Pick up the yellow leaflet for full details or tel. Sarah or Beverley on 0181 770 4644/4667.

THE ACTIVE CLUB

Following the success of last year's Participation Day, Sutton has created this Club for adults with learning difficulties to take place every Thursday 12.15 - 1.45 at the Sutton Youth Centre, Robin Hood Lane. Using the excellent facilities, a variety of activities will be available. Tel. Sarah or Beverley on 0181 770 4644/4667.

SOCIAL CLUB

An article in the Sutton Independent in December reported on the formation of a new social club for people aged 14 - 24 with learning disabilities, some in wheelchairs. Primarily a performing arts group, members rehearse and enjoy music at a Worcester Park school. Contact Val Simmons on 0181 644 1830.

CYCLING

A colourful leaflet cycling for people with special needs refers to London Recumbents - Cycle Hire, Sales and Events. London Recumbents call themselves Special Needs and Family Cycling Specialists and are based at Ranger's Yard, Dulwich Park, London SE21 7BQ tel. 0181 299 6636. Photographs show tricycles and three wheeled recumbents for one or two people, a pedal cycle with a seat with pedals on the front. The duet wheelchair tandem and other ideas are listed. Dulwich Park has "acres of flat parkland" for families to enjoy awheel. (Recumbents are really comfortable - Ed.)

SKIING

The Uphill Ski Club was formed to enable people with any disability to ski. No, they don't ski up hill! With magnificent support from volunteers and access to a variety of equipment, participants are enabled to experience all the thrills of skiing downhill in safety. Details: The Uphill Ski Club of Great Britain, The Print House, 18 Ashwin Street, London E8 3DL tel. 0171 254 1944.

FUN FOR DEAF YOUNGSTERS

Friends for Young Deaf People are holding an activities day for hearing impaired youngsters (aged 5 - 15+) at Crystal Palace National Sports Centre on Wednesday 7 April. Booking form from FYD London Embassy, East Court Mansion, College Lane, East Grinstead, RH19 3LT tel. 01342 300081. Book early!

DOWNSIDE SPORTS DAY

The Branch has been invited to hold a stall - for information and fundraising - at the Downside & Hatchford annual Sports Day on Downside Common on Monday 30 August. Pitch fee is ±5 and 1500 people are expected to attend between 10 - 6 (with access from 8am). Would two or three members and friends in that area like to do this for the DSA or perhaps a local group? The Branch and National Office have display material; goods to sell can be requested from readers in the July Branch Newsletter. Your editor will be happy to send you the organisers' letter.

PRIORITY ACTIVITIES

Greater Manchester Branch of the DSA has reviewed its purpose and methods. It has produced an excellent card calendar, an action plan, and is making its library accessible to members at times other than at meetings. Perhaps South West Thames Branch should consider whether its focus areas are as GMDSA's: Information and Education; Social Activities; Relationships with other DSA Branches and National Office; Publicity and Fundraising; Projects. SWT Branch Committee members will be pleased to hear your views!

GUILDFORD GROUP

Parents in the Guildford area will be pleased to learn that there is a Local Group for you. Contact Jayne Hindmarsh, Community Nurse, 65 Cranley Road, Guildford GU1 2JW tel: 01483 532767.

DSA MORDEN BRANCH

This local parent group continues under the leadership of Caroline Lawless, 39 Lower Morden Lane, Morden, Surrey SM4 4SW tel: 0181 715 4411.

DSA SUTTON SUPPORT GROUP

With thanks to Suzanne and Kumiko for their forming and leading of this group, we now thank Val and Pete Morgan for taking it over. Ring 0181 644 5446 for the address at 8pm of each meeting. Dates: Thursdays 11 March, 6 May and 1 July.

DSA WORTHING GROUP

This Group meets monthly and has a regular newsletter. Its latest edition reports on the Infield School, School for Parents, Fiveoaks, Billingshurst, West Sussex, which is run by PETO Institute trained staff and offers weekly sessions for your pre-school child. Tel. 01403 782294. For Jane Yos and the Worthing Group tel. 01903 772339.

A GROUP FOR PUTNEY

Please contact Mrs. Ali Venables (0181 780 1853) if you would like to help her to form a DSA Parent Support Group in the Putney area. Her baby is eight months old and she wants to meet other parents of young children.

UPS AND DOWNS GROUP

Downs Syndrome Learning Development & Support Group. This group of mothers in East Surrey offers a fortnightly get-together to share experiences, speakers, specialist therapists and play for the children. Contact: Corrine 01293 411155, Julie 01342 844316, or Karen 01342 892603.

CROYDON OPPORTUNITY GROUP

Croydon Opportunity Pre-School Group holds two-hour sessions for children with special needs and their families at two addresses. For South Norwood contact Jane Gifford (0181 654 3975) and, for Selsdon, Lin Bonard (0181 651 4760), both term time only.

DSA BANNERS

Our Branch still stocks strong 7ft 6in. DSA banners for purchase or hire by other Branches or Groups. Contact Maggie Almrott. Did you see one of our banners on TV during Damon Hill's This is your Life?

OVERHEATING

Babies and children with Down's syndrome have poor temperature control and need reminders about putting on or taking off a sweater or coat long after most children manage this for themselves. Rex Brinkworth once told us that a baby with Down's syndrome generates heat when sleeping. It is important to adjust the bed clothes to prevent effort being put into keeping warm instead of into fighting any infection.

SPECIAL BOTTLE

A note in the Down's Heart Group Newsletter refers to a special feeding bottle for a baby having serious problems. The 'disposable' Avent set has a plastic inner which contracts as the milk is sucked out thereby preventing the baby taking in air.

PARENTING

Perhaps the most difficult job faced by all of us, usually with no formal preparation and often in isolation. East Surrey Health Authority's magazine, Care Spectrum offers courses which are really making a difference to those who have made the effort to attend. Tel. Lorraine Demko 01372 731015.

PROFESSIONALS

Having a child with special needs brings us into contact with many professionals with varying degrees of understanding about our child. It is advisable from the beginning to record the name of each adviser who offers guidance whether medical, educational or social, with the date of the conversation and its contents.

SHOES TO FIT

Children with Down's syndrome usually have feet narrow at the heel and wide at the front. Badly fitting shoes in childhood can lead to serious mobility problems in later life. Lace-ups for boys are fine. The thick patch of leather where the strap for sandals is joined has caused problems. Smart well-fitting shoes for girls can be difficult to find. The Scottish Down's Syndrome Association Winter 1998 Newsletter gives a firm that makes shoes to fit: Minehead Shoe Company tel. 01643 705591. Apparently Disability Scotland has a list of companies who make clothes and shoes: 0131 229 8632.

SARAH MERRIMAN

Author Andy Merriman's daughter was born with Down's syndrome in 1992. His story: A Minor Adjustment, is being published in parts in several national newspapers and on TV. The DSA has been closely involved.

HELP, HOW CAN I ... ?  Stop my child pushing others

Probably this relieves the frustration of not being able to speak as fluently as the other children. Perhaps, too, s/he is copying what other children do. Continue - with patience and fun - to work on speech and language development and try to ensure other children are not taunting, or indeed simply occupying the space regarded as his/hers by your own child. Many children need guidance on the amount of space to leave between themselves and others. Is there temporary hearing loss? Perhaps the child could be taught signs to 'say' what is beyond his/her present speech eg 'move away', 'leave me alone', 'I want to be with .. '. With team work at school, home and other activities, try to get the pushing ignored but praise when s/he hasn't pushed a child for a short time. This might cure itself in that other children will get fed up with being pushed and may well push your child who will discover it can hurt. Dr. Olwen Wilson could have more suggestions on 24 April.

CLEFT LIP AND PALATE

This congenital condition occurs in similar frequency to that of Down's syndrome and is often caused genetically. There is a parent support organisation with nationwide contacts: Cleft Lip & Palate Association, 134 Buckingham Palace Road, London SW1W 9SA tel. 0171 824 8110.

STAMMERERS

The British Stammering Association launched in November 1998 the first Telephone Helpline in the world for stammerers. The number is 0845 603 2001. DSA National Office stocks an excellent 50p booklet, co-written with the BSA, entitled Dysfluency, stammering and Down's syndrome.

DISS SURREY

Disability Information Service Surrey offers information on most aspects of disability at various centres across the county or from 01306 875156 (fax 01306 741740). Their slogan is We'll point you in the right direction.

TRIPSCOPE

This registered charity offers advice and information to assist with any journey which presents problems because of disability. It claims to solve mobility problems over any distance and for individuals, families or groups. 0181 994 9294.

HOLIDAY CARE SERVICE

This national charity, based at Horley, Surrey, offers advice on all aspects of holidays at home or overseas for people with disabilities or limited income. 01293 774535.

FUN DAY AND FAIR

Sorry, photo by Paul Everington not on website

THE TWELVE COMMANDMENTS

for Parents of Children with Disabilities

by Virginia Richardson, courtesy 'Contact a Family', D. Torrence.

I   Thou art thy child's best and most consistent advocate
II  Thou hast valuable information about your child. Professionals need your input

III Thou shalt put it in writing and keep

IV Thou shalt try to resolve problems at the lowest level but not hesitate to contact a higher authority if the problem is not resolved

V Thou shalt keep records

VI Thou shalt seek information whenever needed

VII Thou shalt take time to think through information before making a decision

VIII   Thou shalt have permission to be less than perfect. Important lessons are learned from both successes and failures

IX  Thou shalt not become a martyr. Decide to take a break now and then

X   Thou shalt maintain a sense of humour. It is great for your emotional well being and that of your child

XI  Thou shalt always remember to tell people when they are doing a good job

XII  Thou shalt encourage thy child to make decisions because one day s/he will need to do so.

DATES TO NOTE

Saturday 10 April DSRF meeting, London, 12.30-5 (see paragraph)

Saturday 24 April SWT Branch Information Day and AGM, Purley

Sunday 9 May Branch Committee meeting, Godalming

Sunday 4 July the Big H sponsored cycle ride (0181 420 6834)

Saturday 16 October DSA AGM

Saturday 13 November Branch Fun Day and Fair, Maidenbower

BRANCH COMMITTEE:

All officers and committee members are available to DSA members seeking help or support.

CHAIRMAN
Mr. Mark Anderson
0181 661 9400
 

VICE CHAIRMAN & NATIONAL REPRESENTATIVE
Mr. Alan Mayne 01483 415874
 

TREASURER
Mr. Jim Cowie 01342 326392

NEWSLETTER EDITOR /MINUTES SECRETARY 
Mrs. Shirley Quemby 0181 642 3720 (fax 0181 241 3947)
 

BRANCH MINI-LIBRARY
Mrs. Maggie Almrott 01403 257083
 

COMMITTEE MEMBERS

Mrs. Karen Edmonds 0181 330 1597

Mr. Paul & Mrs. Rashne Everington 01293 889777

Mr. Enrique Lopez & Mrs. Keiko Lopez Fujimaki
01784 434650

Mrs Mary Short 01403 700805
 

REGIONAL DEVELOPMENT OFFICER
Miss Rosalind Chislett(answerphone) 01342 826250
 

DSA NATIONAL OFFICE

0181 682 4001 (fax 0181 682 4012)

155 Mitcham Road, London, SW17 9PG

The views expressed in articles in this Newsletter are not necessarily those of the Association. No responsibility can be accepted by the Branch for services described.