Dear Parents and Friends,

For our November Open Day for parents and professionals, dsOK are planning a two-part day. In the morning there will be plenty of opportunities for learning about and trying out Numicon, a method which is being found to be very successful in improving number skills with our children with Down's syndrome. Guidance on behaviour modification will follow, with opportunities to raise queries about individual children. DsOK trustees are committed to providing the training sought by many of your children's teachers and assistants. Full details to dsOK members in due course or contact one of our trustees - or watch our website!

PARENT CONTACT LISTS

We thank Mrs. Janine Brewster who is now our membership secretary, lightening the secretary's load. Mrs. Brewster is working on completing the Parent Contact Lists requested by many of you when you returned your dsOK membership form. Additional Contact Lists for sharing specific knowledge are also planned, to be initiated at our Open Day on 8 May.

LOCAL GROUPS

It is a great help to newer parents if our secretary is notified of local parent groups. Please pass details to the editor as well and your group can be publicised for all readers. Many thanks!

MARGARET AND ANN

Most readers will have spoken with Margaret Tyler (picture) who became DSA receptionist when the Association first moved to London from Birmingham some 20 years ago. Margaret stayed with the DSA from Oxford Street to Clapham and more recently at Tooting but has now left as the journey to Teddington was too complicated. We all thank Margaret for her service over so many years and send her our very best wishes for the future. Her hobby is her Heritage house where she displays rooms full of royal memorabilia - you may have seen her on TV from time to time.

Dr. Ann Kenney (DSA's fundraising officer) who came to our recent Open Day at Purley left on maternity leave last autumn and is now enjoying being a Mum to baby Thomas David. We wish them and Dad, David, all happiness.

NORMANSFIELD

Some dsOK members have now visited the historic building which is the headquarters of the Down's Syndrome Association and we do recommend you try to visit, too. Telephone first. Hampton Wick station is nearby and buses from Kingston and Twickenham pass outside. A conference is already arranged to take place there on 29 April and the DSA AGM will also be in Dr. Langdon Down's amazing Victorian theatre (built for the patients of the day) on Saturday 16 October.

HELP, HOW CAN I . . . .?

(An occasional series which welcomes either problems or solutions from readers).

Pave the way towards my child joining the Scout or Guide Movement?

For the youngest children, Rainbows for girls and Beavers for boys or both; from age 7 or 8 there are Brownies for the girls and Cub Scouts for boys or both. Many children with Down's syndrome have made good progress through the Movements, a few even achieving Queen's Scout. All units are run entirely by volunteers some of whom will understand that children with Down's syndrome can fit in, achieve and benefit the other children as well. Others will have old-fashioned ideas which could include fear of the unknown. Talking with other parents will help you to locate a good unit if there is a choice in your area. Check whether it has a waiting list. Even before joining, you as parents can show active support of your local groups by attending fundraising or other activities, taking your child along as part of your family. Explain to your youngster a bit about the fun had by Rainbows/Beavers, Brownies/Cubs and about wearing a uniform and looking smart. Ensure you are teaching good behaviour (praise the good, ignore the unwanted) because a well-behaved child will be more welcome, and feel more included, than a child whose behaviour appears to be inappropriate.

Although the volunteers who lead and help at the units are busy people, they will be pleased if you can give them tips such as 'children with Down's syndrome learn best through their eyes', 'give one instruction at a time at first, not several', 'speech is limited but s/he signs' (demonstrate the signs which might be worrying the leader such as 'toilet'). If you can show that some children in the unit already know your child from school, church or another club, this could also help. Some units initiate a 'buddy' system so that members take turns to make sure the one with a learning difficulty understands what is going on, where s/he should be and what is required for the game or activity. The DSA's Including Pupils with Down's Syndrome (free to DSA members) is easy reading yet full of handy hints for voluntary leaders. Be ready to listen and explain, and to help at home with test work - your own skills could be extended by this experience!

OLDER FAMILY CARERS

Family Futures, newsletter of the Foundation for People with Learning Disabilities, has produced a toolkit to help Learning Disability Partnership Boards improve their support for family carers. It is entitled Valuing Families: A Toolkit for Family Friendly Services and includes 'lots of guidance' for families in which the adults who have a dependent with a learning disability are over about age 70. Download the toolkit from the Valuing People website at www.dh.gov.uk/vpst

MORE ABOUT MOVING ON

A report in Family Futures describes work on ten families by Ealing Mencap and Notting Hill Home ownership. This has resulted in a manual and video: Your Place to Live - Making it Happen. Different types of accommodation are shown with various forms of support according to the preferences and needs of six adults with learning disabilities. Contact Housing Options on 08454 561497. There are at least 20 different long-term housing support options for people with learning disabilities. In partnership with the Older Family Carers Initiative, Housing Options offer to train people to help older families to plan for the future. Prioritising person centred planning with people living with older family carers is one of Valuing People's targets for 2004.

SINCERE THANKS

Our treasurer writes:

We are always delighted to receive donations from our members and friends. Many of these lovely people raise money by doing very energetic things. Activities which the rest of us find awe inspiring, and which we are as likely to achieve as fly to the moon! Mrs. K. Stewart, however, did something which we could all do, she ran a charity catalogue. Thank you, Mrs. Stewart, the money is very much appreciated. You never know, you might inspire others to do the same.

The trustees also have to thank Citigroup. One of our new members last year raised a large amount on the London to Brighton cycle ride. In recognition of this achievement, Mr. Phillips' employer, Citigroup, also donated money to us for which we are most grateful. Would other members' employers do the same?

GIFT AID

The DSA and dsOK can reclaim tax on subscriptions and donations if you are a tax payer, thereby increasing the value of your payments at no direct cost to you. The charity simply needs from you a declaration that the payment is to be treated as 'Gift Aid'. Further details from our Treasurer or at our Open Day on 8 May.

If your fundraising event results in a list of donors (perhaps sponsors), the full name and address of each of these who is a tax payer is required with an indication that they wish their contribution to be considered for Gift Aid. If you collect cash donations and send them all in yourself, they do not qualify for Gift Aid.

DS AWARENESS WEEK FAIR

Down's Syndrome Awareness Week is earlier this year and dsOK trustees are planning to attend Cheam Fair in Cheam Park (Ewell Road, A232) to raise awareness and funds. For a useful day out helping and enjoying the fun, do contact Liz England or Janine Brewster to offer an hour or two between 10 am and 5 pm on Monday 31 May. Organised annually by the local Rotary and Round Table, this very large and popular fair is a great opportunity not only to meet and talk to members of the public about Down's syndrome but to sell cakes, white elephant and toys. Contributions for sale are required, please. Non-perishables may be brought to our open meeting on 8 May. Cakes will be welcome on the day or just before.

DOWN'S SYNDROME AWARENESS WEEK

This year the dates are Monday 31 May to Sunday 6 June. Awareness Week packs are offered by the DSA, ring Xanthe on 0845 230 0372 and arrange a coffee morning or other activity for your locality! If you make a profit, be sure to decide beforehand, and make it clear, whether this will be for the Down's Syndrome Association or downsyndrome OK or, indeed, your own local group. And remember to send in a report for dsOK news, please! Contact the Editor.

COMIC BOOK FOR BOYS

Sutton Contact a family Spring newsletter describes a comic book for boys with a learning disability entering puberty, entitled Ready - Steady - Change! It is colourful and imaginative and could help adults to discuss and explain what their son needs to know about growing up. Text is supported with Makaton script. Contact Gloucestershire Health Promotion Resources on 01452 429363.

TEENAGE ISSUES

The DSA with Downsyndrome Extra 21 (formerly the N.E. Thames Branch) are holding a conference on teenage issues on Saturday 24 April at Chelmsford College, Essex. Speakers will be from Consent, Connexions and college staff, explaining opportunities open to the 16+ age group. Contact Deidre Clement on 01277 365618 or email downsyndromee21@aol.com

THE FOUNDATION FOR PEOPLE WITH LD

Some of this organisation's recent publications may be read on www.learningdisabilities.org.uk or telephone 020 7802 0300 to request copies.

INCLUSION TRAINING DAY

Bob Black has emailed these details in the hope members will encourage their child's nursery/preschool staff to attend: On Thursday 29 April, 9.30 - 4, an education day is being held for teachers, support staff, health and social services professionals and others working with students with Down's syndrome in early years settings, at the Langdon Down Centre, Teddington. The speakers are all highly recommended (and familiar names to many readers): Dr. Stephanie Lorenz, Sandy Alton, Tessa Duffy, Cecilie McKinnon and Jane Beadman. The topics will include inclusion, the learning profile, language development, early reading and number and avoiding difficult behaviour. Be sure to encourage your child's teachers to attend. Registration costs £75 per delegate and includes lunch. Details from Julian Hallett 02920 522511 or email: dsa.wales@lineone.net Book by 16 April.

UNDER FIVES CONFERENCE

One of the DSA's most popular conferences is being repeated in Berkshire on Saturday 22 May. Focus will be on speech and language development with guidance on the Statementing process and health/medical issues. Contact Gill Hayes.

SUPPORTER MOVING UP

A fascinating report in Down Syndrome Liverpool's October newsletter tells of an Educational Support Assistant who began with Sophie at primary school (age 4) and has remained with her into the local secondary school. Clearly thrilled with the move, the ESA writes: 'Every day is different and we are doing such interesting things. The teachers all want to do what is best for Sophie and include her in everything. She loves it and she has become so grown up'. (www.ds-liverpool.org.uk)

MAKATON WORKSHOPS

Sutton Contact a family announce two workshops at the Joan Bicknell Centre, Burntwood Lane, (Springfield Hospital), Tooting, SW17 7DJ on Fridays 14 and 28 May 9.30am - 4 pm. Details Catriona Bradley 020 8700 0409. Readers whose baby is new may not have learnt yet that Makaton is a sign language designed (more than 20 years ago) for babies and children but based on British Sign Language. By teaching signs to your baby or child, as well as speaking, many of the frustrations of delayed speech may be prevented.

BRIGHTON SPEECH THERAPY

A parent member has written to us about Speech Therapy classes held on Friday afternoons at St. Thomas More Catholic Church in Braybon Avenue, Brighton. The tutor is Leela Baski from Symbol UK (Tessa Duffy's organisation). To find out more, tel. Pauline Keating 01273 559155 to be placed on the waiting list. The current cost per term is £95.

FOOTWEAR

Many readers will remember the helpful talk last May by podiatrist, Priya. Priya was married in July and now lives in Loughborough but is still 'spreading the word' on the special care of the feet of people with Down's syndrome. She believes the following website could be of interest to our parents: www.specialfootwear.co.uk based at 12 New Cavendish Street, London W1G 8UN, tel. 020 7486 4664. Priya has also recommended www.ds-health.com/ortho.htm, showing the studies of Len Lethin, and a dsOK parent member has already found this helpful.

HIGH SCHOOL GIRLS

Eight sixth formers at Nonsuch Girls' High School, Cheam, are keen to share their interest in Down's syndrome by helping a child or young person. Their volunteering followed a talk by Shirley Quemby and Alexandra Phillips (who has Down's syndrome) with a wide ranging question and answer session. The girls would like to help with homework or other after-school activities in the home of a family near their homes. This could be for Duke of Edinburgh Award service or for experience or for pocket money - each family to work this out with their volunteer. Make contact through Mrs. Quemby to: Emma (Epsom Downs), Fifi (Worcester Park), Alexandra (Reigate), Charlotte (Croydon), Michelle (Wimbledon), Arti (Sutton), Ambika (Belmont) or another Emma (Cheam).

STAINES OFFER

We have received an email from Nicole Clifford who is 29 and has a baby of about five months. Nicole's sister, aged 20, has Down's syndrome. Nicole is seeking part time employment and would like to help children with special needs. Her address is 5 The Old School Mews, Thorpe Road, Staines, Middlesex, TW18 3HX. She can travel. To make contact telephone 01784 491077 or mobile 07904 955628.

SKATING FUN

The Werewolves of London Special Ice Hockey team at Streatham ice rink are keen to recruit more players. They meet on Saturday afternoons and welcome children and young adults with special needs including beginners. Details Mike 020 8644 1998 or www.streathamicehockey.com

RESEARCH AND DS

A lengthy report and copies of letters in Down Syndrome Liverpool newsletter No. 4, January 2004, raise thought provoking questions on the amount spent on research relating to Down's syndrome both here and in America. Points made are that disabilities which occur less frequently than Down's syndrome receive more funding for research. Research on Down's syndrome is mostly on screening with a view to termination. The letter which triggered these dissertations stated that the IQ of children with DS has been raised by 20 points in recent years. Yet apparently the only way forward is to prevent these children being born. Surely, what is needed is a change in expenditure towards knowing more about genetic conditions, a think tank to bring together all the research in the world to determine the best way to help these very special children. Oliver Letwin MP is putting down a Parliamentary question to this effect. To follow this up contact Mrs. Gillian Barrett, Chelsea Cottage, Dorchester Road, Sydling St. Nicholas, Dorchester DT2 9NU or email gill@bizkitsolutions.com

NEWBORN BABIES

The DSA research which has been taking place with new babies is continuing well but is needing more funds. DsOK trustees have agreed to contribute towards the £200,000 needed. The research is supported by the Royal College of Physicians and the Department of Health. Those of us with older children are grateful to the new parents who have enabled this work to take place.

DOWN'S HEART GROUP

The national charity which is invaluable to parents with a child with Down's syndrome and a heart condition. Its contact details are now: tel. 0845 166 8061, info@dhg.org.uk www.dhg.org.uk

JADE'S STORY

The Canadian author of Natural Harmony: Jade's Story has very kindly sent two complimentary copies to dsOK. One will be placed in the library for you to browse/borrow on 8 May. Meantime, your editor has read much of it and found it to demonstrate the huge benefits of consistent and fun teaching of this delightful little girl. An absorbing and well-written account. Contact details in dsOK news no. 3.

LEUKAEMIA

The reference in dsOK news no. 3 brought a message from a parent member who wishes she had known more about leukaemia when her child with Down's syndrome was diagnosed with this illness. Readers who feel they would like to be in touch with others with the same concerns do contact a trustee.
Cycling
Your editor has been a supporter of National Bike Week for many years. This year, Bike Week (12 - 20 June) is backing Leukaemia Research. To enjoy pedal power and raise useful funds, click on www.bikeweek.org.uk or email HQ@bikeweek.org.uk or tel. 01243 527444. Shirley Quemby (see trustees list) is happy to provide advice for cycling beginners.

DSOK EDUCATION DAY

Following the success of our Education Day on 22 November, we invited the DownsEd team to return on 28 February. A larger modern school was booked and more than 60 parents and 60 professionals came along. As before, three topics were covered for three age groups. A great many children with Down's syndrome and their families will benefit from the expertise shared during this very full day.

Professor Sue Buckley, in her keynote speech, explained that DownsEd research had begun almost 25 years ago. At that time society treated people with Down's syndrome as if they were 'different' and most grew up in social and educational deprivation. On the DownsEd website is her Living with Down Syndrome. Sue reminded her audience that an individual's sense of worth is socially created. If a child grows up feeling they are not living up to their parents' expectations, their confidence will be low. (Sue has an adopted daughter with Down's syndrome in her 30s).

All the speakers (Gillian Bird, Mandy Wood and Jo Nye) mentioned computer programmes which can assist youngsters who have Down's syndrome: Jolly Phonics, Leaps and Bounds 3, My World 3, Speaking for Myself, Clicker 4, Star Spell (for over 11s), Number Train and Number Plane. Some new parents were amazed to learn that babies and young children with Down's syndrome can be taught to read and their child's language and speech skills will be increased by reading. Another mother was so thrilled at the progress her 4 - 5 year old had made since she attended our November Education Day that she brought all her child's teachers on 28 February. The DownsEd website contains much useful advice and information for parents and teachers: www.downsed.org

GOING TO COLLEGE

The video we made: Growing Up with Down's Syndrome ... Going to College, is still available and will be on sale at the 8 May Open Day (where you can meet its star presenter). It is hoped all secondary and special schools will own a copy, as well as colleges - good value for the £5 donation requested. Order from national office but make your cheque payable to downsyndrome OK.

COFFEE INVITATIONS

Our secretary, Liz England, is looking forward to her coffee mornings continuing. All members are invited to her home from 10.15 am for coffee and chat, whatever the age of your child. (Please telephone before setting off). The dates are: Monday 19 April, Tuesday 4 May, Thursday 8 July, Tuesday 14 September, Monday 11 October. Please telephone beforehand to confirm

Janine Brewster would also like to meet you and invites members to her home for coffee and chat from 10.15 am on Wednesday 9 June and Friday 13 August. Again, please telephone before setting off.

EAST BERKSHIRE

The East Berkshire Down's Syndrome Support Group continues to send your editor their lively and informative newsletter. Activities are available to assist with speech and language, partying, fundraising and sporty fun for all ages. To find out more, telephone Alan Cotter 01344 305837. They also have links with West Berkshire DSA.

DSA FUNDRAISING

If you or your friends are keen to undertake daredevil activities to raise funds for the DSA (parachuting or white water rafting) this summer, contact the DSA fundraising team (Kelly Westlake 08452 300372) for details. There are also walking (in Peru The Inca Trail 3 - 12 June) and cycling (the Capital to Coast cycle ride on 11 July) and other walking/running challenges. On Saturday 19 June the Parliamentary Classic Car Run has classic car owners driving from their homes to Westminster for sponsorship.

RAFFLE RESULT

Winner of the car in the DSA raffle is a dsOK member, Mrs. R. Baines, and we congratulate her!

CaF ACTION PACKS

Contact a family have published three action packs for parent groups: The role of a medical advisor, The role of trustees and Public Speaking for Parents. Contact Jo on 020 8404 1971 or go to www.cafamily.org.uk/GAP

HIGHLAND ADVENTURE SAFARIS

An attractive article in the Spring 2004 newsletter of Down's Syndrome Scotland describes options for holidays or day trips in Perthshire. Highland Adventure Safaris with experienced guides are for all ages and abilities and may be booked for groups. Warm jackets and sensible shoes are required for these trips in a comfortable Land Rover with opportunities to see red deer, eagles, mountain scenery, walk short distances and even pan for gold! All safaris begin at the Safari Lodge at Drumdewan, Dull near Aberfeldy in Highland Perthshire. Contact: Muriel Gibson tel/fax 01887 820 071, email: info@highlandadventuresafaris.co.uk or visit www.highlandadventuresafaris.co.uk

DIARY DATES

Saturday 8 May dsOK Open Day and AGM

Monday 31 May Stall at Cheam Fair

Monday 31 May to Down's Syndrome

Sunday 6 June Awareness Week

Sunday 4 July dsOK trustees' meeting

Saturday 10 July picnic and treasure hunt

Sunday 11 July Capital to Coast cycle ride (was Big H)

Sunday 19 September dsOK trustees' meeting

Saturday 16 October DSA AGM Normansfield, Teddington

Saturday 6 November (provisional) Open Day on Numicon

2005

Sunday 16 January dsOK trustees' meeting

Saturday 7 May 2005 dsOK Open Day and AGM

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