NEWS, number 1, July 2003

Welcome to downsyndrome OK News which supersedes the South West Thames Branch Newsletter. The original South East Branch broke into four 'Thames' Branches in 1989. Now we move forward again, becoming an independent company and charity affiliated to the DSA. Our Committee members are now trustees, volunteers each with a child with Down's syndrome, keeping up the traditions and activities begun by the DSA's first Branch back in 1973. To ensure your continuing (free) membership, please sign and return the enclosed buff form (unless you did so at Purley on 10 May).

The visit of a team of experts from DownsEd, Portsmouth, will be the highlight of the autumn term both for parents and for the professionals you are encouraged to bring along. The full programme of this valuable Open Day will accompany the next downsyndrome OK news but make sure you hold the date: Saturday 22 November, 10 - 4 in Worcester Park (between Kingston-upon-Thames and Sutton, Surrey) and spread the word.

May the holiday season bring happiness and contentment to you all.

NEXT YEAR!

The date for the Open Day and first AGM of downsyndrome OK has been fixed for Saturday 8 May 2004 at Dorchester School, Worcester Park. Do keep the date. Music therapy and Numeracy are two topics being arranged. It is some years since a speaker from Nordoff Robbins enthralled her audience. This is a strongly recommended presentation whatever the age or ability of your child. We plan to continue our practice of inviting a speaker with Down's syndrome for the fifteen minute slot after lunch although this year's speaker, Alexandra Phillips, will be a hard act to follow. New parents are especially welcome at all our Open Days.

MANY THANKS

Donations have been most generous in the past months. We are very grateful to our kind supporters including the Masonic Frederick Lodge of Unity in Croydon.
See Photo of Shirley and Roger Quemby of dsOK receiving the cheque.

USBORNE GIFT

Thanks are due to Usborne books for not only supporting our Open Days but donating new books.

CLASSIC CAR RUN

Remember the offer in the last Newsletter to take part in this event on 5 July? Liz England reports it went very well and the 1974 Ferrari 308GT4 raised just over £600. Many thanks to all sponsors and to Liz and Lance and friends for this success.

GOING TO COLLEGE VIDEO

Copies are still available for £5 from National Office. Please encourage your schools and teenage friends to purchase theirs. Cheques made out to DSA South West Thames Branch (if already written) or downsyndrome OK should be sent to National Office with your address. If you have views on the next video, please talk to a trustee (contacts).

DOWNSYNDROMEOK WEBSITE

Watch out for our new website which is being constructed following our change of name and status. Ajit Mané and Paul Everington will be pleased to receive ideas, contributions and comments.

EASY2NAME

First reports of the quality of product from this company are good. Please order your labels for school as downsyndrome OK benefits from all sales made on the order forms we have distributed. Ask Helen Long for forms for your friends.

PARENT CONTACT LISTS

The lists created by the Branch some years ago, for members who would like to contact other parents, will continue. For those on it, an update is enclosed. Liaising with members in your area can help with educational, medical and other problems. To join the list, tick the box on the enclosed form.

OLDER CARERS

The Foundation for People with Learning Disabilities issues a newsletter, family futures, which contains information and guidelines for older family carers (carers aged about 70 or over with a dependent with learning disabilities). For issue 2, dated July 2003, contact Patricia Umolu, tel. 020 7802 0330 or email: pumolu@fpld.org.uk

THAT THYROID

As we become used to being parents of a youngster with Down's syndrome, we learn that our child's thyroid should be checked from time to time. We are told that under-active thyroid (hypothyroidism) is common and not possible to recognise without a blood test because symptoms are similar to aspects of the condition of Down's syndrome itself: lethargy, deep voice, dry skin and overweight.

A blood test is also necessary to identify an over-active thyroid (hyperthyroidism). Although rare in Down's syndrome it is not unknown. Indeed, where it occurs it can be more serious, hence the importance of ensuring children and adults with Down's syndrome are tested. Symptoms can include more frequent visits to the toilet, being over-anxious, poor sleep pattern, fidgetting in bed, enlarged eyes, quicker pulse, weight loss, unclear speech.

Many readers will never need this information but at some time it could be important. Effective treatment of both under-active and over-active thyroid is available as it is to people without Down's syndrome. An endocrinologist explained for a patient with Down's syndrome: a hormone is a chemical made in one place which has its effect elsewhere. Hormones come from glands and control how the body works. Thyroid hormones (particularly thyroxine) control signals, they control the speed of everything in the body. If too much is made (hyperactive) everything goes too fast, if too little (hypoactive) you turn into a slug!

SELF ADVOCACY

Sonia Weiss from Advocacy Partners was a welcome speaker at our May meeting and explained different sorts of advocacy. Advocacy is about helping people to have a say in decisions which affect them such as what to wear, where to live, complaints against services. Self advocacy is speaking up for ones-self or a group speaking up about things important to its members. Citizen Advocates are volunteers who befriend someone for a number of years, going out with them, doing things together, speaking up for them, the advocate enabling their person to speak up for themselves where possible. Independent advocates are professional workers, paid usually for a short time such as a year or two to assist with a difficult or complex decision. Advocates are always needed and training is provided.

Advocates help people to do things for themselves, make independent choices, explore the options, working with them not for them. Facing a board of ten professionals can be daunting; the advocate will support the client by being present and speaking up where needed. Sonia explained how advocates can help where their person cannot speak - other methods of communication have to be found. Advocacy Partners is a charity, the service is free. Advocates have great loyalty to their person and are not employed by Social Services or the Local Authority. The advocate will make sure their person's rights are upheld. The advocate helps their person to make decisions but might not always agree with the decision reached. (There is a right to fail). Good listening skills and good communication are essential attributes for the advocate who must be quite diplomatic.

THE SAME AS YOU

This leadership scheme is being implemented by the Scottish Consortium for Learning Disability. For ideas for adults with learning difficulties which might perhaps be copied in your area visit www.scld.org.uk

ROTARY THANKS

For some years Sutton Nonsuch Rotarians have been voluntary drivers for the fortnightly meetings of People First (a self-advocacy organisation run by and for people with learning difficulties). Sutton People First Project Worker, Roger Quemby (who has Down's syndrome), was recently presented by the Nonsuch Club with a Rotary International Community & Vocational Service Award for his work with people with learning difficulties. Well done, Roger!

FEELING DOWN

Following a recommendation in Count Us In, two booklets have been published to guide parents and carers in supporting the emotional well-being and mental health of young people with learning disabilities: All about feeling down and Meeting the emotional needs of young people with learning disabilities. Published by The Foundation for People with Learning Disabilities (part of the Mental Health Foundation) these booklets have been created by working closely with young people themselves and with carers. Available from the Foundation's Publications Team on 020 7802 0304 www.learningdisabilities.org.uk

SPIRITUALITY PROGRAMME

The newsletter of The Foundation for People with Learning Disabilities, foundation stones, reports on this study which is now into its second year. To be kept informed, contact Patricia Umolu, 020 7802 0330 email: pumolu@fpld.org.uk Draft training materials will be produced for use by service agencies to improve the way they meet the religious needs of people with learning disabilities.

SURREY CARERS

Action for Carers (Surrey) runs seminars/workshops, usually at Leatherhead Leisure Centre. Lunch is provided free and help with transport may be available. A booklet about welfare benefits is also offered. Tel. 01483 302748 or www.carersnet.org.uk

BLOOD TESTS

Some of our members report that medical professionals have considerable difficulty obtaining sufficient blood to test for thyroid abnormality or other information. It seems some children have received puncturing in various places before enough blood could be collected. One mother said the groin proved to be a successful site. One child was given an anaesthetic for another purpose and the opportunity was taken to try to obtain blood. Do contact the Editor with your experience(s) especially if your medic has found a solution.

OTHER LANGUAGES

The DSA published some years ago booklets for new parents in several languages. These are being placed on the downsyndrome OK website.

CHILD TAX CREDIT

Child tax credit is easy to claim online: www.taxcredits.inlandrevenue.gov.uk/Home.aspx Have available tax reference, National Insurance number, total earnings for tax year 2001/02, if childcare is paid for then the name, address and local authority reference number for the individual.

HON. SECRETARY

Liz England has been our stalwart secretary for more than three years but feels it is time to stand down, or share some of the tasks involved. Is there a member who would like to help? Please contact Liz or any trustee to discuss volunteering. We thank Liz for her invaluable contribution to the Branch and downsyndrome OK.

HON. TREASURER

South West Thames Branch owes a great debt of gratitude to Stewart Bailey who has looked after its accounts for more than three years. As we become downsyndrome OK, he is handing over to our Vice Chairman, Karen Edmonds. Thank you to Stewart and Karen.

WORTHING AND BRIGHTON

The Worthing and Brighton Local Down's Syndrome Group continues the tradition of the Worthing Group in publishing a regular newsletter. Future meetings are planned for 8 pm on Tuesdays 2 September and 2 December in Tarring, Worthing. The contact for speech therapy, led by Tessa Duffy's organisation, Symbol on Friday afternoons in Patcham, is Pauline on 01273 559155. Secretary and editor is Hazel White 01903 203317.

EAST BERKSHIRE

This DSA Support Group continues to publish informative Newsletters and has allocated specific topics to its committee members including contact for new parents, post16/adults services, teenage activities, swimming, and education. To make contact, tel. Boz on 01344 622644 bozena@eidosnet.co.uk

DOWN'S SYNDROME SCOTLAND

Downsyndrome OK is a member enabling us to share some of the valuable information DSS publish. Their AGM on 4 October in Dunfermline will include workshops on play, education, health and wills. Tel. 01313 134225, email: info@dsscotland.org.uk www.dsscotland.org.uk If any reader plans to move to Scotland, do make contact to find out about parent groups in your new area.

CARSHALTON DRAMA

Following the paragraph in the March Newsletter, Kathy Maillet reports that the drama with music group, for children with Down's syndrome aged 5 - 11, is up to numbers to start on 10 September. Tel. 020 8669 8942.

SCREENING

Maggie Gilbert writes: On Monday, 19 May, eleven allies and people with Down's syndrome took part in a direct action against a eugenics conference of 150 doctors that had gathered in Regents College, London, to talk about 'planned populations' and the latest in screening programmes for detecting Down's syndrome in pregnant women with a view to termination. The conference organisers had refused to have a speaker with Down's syndrome when approached a few weeks before so we took the conference by storm and chanted 'stop testing now' so much that they had to allow Anya Souza, who has Down's syndrome, to talk for ten minutes. She was brilliant, got a good reception from the audience and hopefully sowed seeds in a few minds that perhaps screening and terminating is not the 'final solution' or the way forward for a humane society after all. Leaflets were handed to the delegates.

Kitty Gilbert: I enjoyed watching the conference although I was a bit scared of what the conference people were saying. I think Anya's speech was brilliant and she said it all so well.

PARENTS

Many parents of a child with Down's syndrome feel a great desire to help any new parent who contacts them - but how? Once we have discovered our child is a much loved member of the family and, with information from the DSA, we can improve our baby, we want new parents to experience this too. Our downsyndrome OK trustees suggest we should not feel obliged to undertake a counselling course but we must be careful to listen to a new parent and be gentle and sensitive about offering information. Sessions for parents wanting to help have been held from time to time. It has been found that photographs may upset new parents. Parents and professionals are always welcome to contact our trustees (see reverse of Newsletter).

COURSES

The Contact a Family summer 2003 newsletter lists courses and conferences. Although now past, asking for a repeat could encourage more to be oganised. Topics for parents included Siblings, Assertiveness Skills, Challenging Behaviour. Two Factsheets are offered, one for a parent (with a disabled child) considering returning to work, the other about starting a Parents' Group. Contact Jo on 020 8543 9068.

THE RED BOOK

For the children's medical record Red Books there are special, helpful inserts relating to babies and children with Down's syndrome. If your GP cannot provide yours, contact Down's Syndrome Medical Information Services (DSMIS), Children's Centre, City Hospital Campus, Hucknall Road, Nottingham, NG5 1PB, Tel. 01159 627658 (ext. 45667) or 01159 346182 (DSMIS mailbox).

REVIEW MEETINGS

A positive article in the DS Scotland newsletter describes preparing for a review so that maximum success is achieved. Copies from the web or DS Scotland or your editor.

PARTNERSHIP

Sutton Parent Partnership is a confidential service which offers help and support for parents on many aspects of the education of their child with special needs. Tel. 020 8640 4541, email: suttonparent.pship@talk21.com

FRIEND WANTED

Anisa is 9 and has Down's syndrome. She is an Asian Muslim, in mainstream school and lives in Morden. She is asking for a friend through the CaF newsletter. Please ring her mother if you have a nine year old who would like to be friends with Anisa. 020 8286 1398.

IMPRISONED!

For a disability awareness day at Highdown Prison, Sutton, four of our members spent several hours manning the DSA stand on 27 June. Many worth while conversations took place about Down's syndrome with officers, prisoners, visitors and other stallholders. We look forward to receiving copies of the photographs taken of Kitty Gilbert and Roger Quemby (who both have Down's syndrome), their mothers and the Prison Governor at our stand. Two young officers were particularly impressed that Kitty had eight GCSEs which was more than they had between them! A valuable day.

COFFEE INVITATION

Committee member (now trustee), 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. The dates are: Tuesday 9 September, Friday 17 October and Wednesday 26 November. Westwood Avenue turns south off Woodham Lane (B385) or is less than a mile walk (across the canal!) from West Byfleet station.

SPECIAL SCHOOLS

A summary of a report by a Special Schools Working Group is available from the Department for Education and Skills: 08456 022260 email: dfes@prolog.uk.com and quote DfES/0258/2003.

DOWNS ED, PORTSMOUTH

The Worthing & Brighton Group newsletter informs us that DownsEd are holding open days on Thursdays 28 August and 30 October 10 - 4. Contact for brochures or information: 02392 855320, brochures@downsed.org, www.downsed.org

PROGRAMS

Two computer programs which have been found helpful by parents are: 'Speak for Myself' and 'Type to Learn'.

FASCINATING FORCES

An exhibition which could help our youngsters to understand and enjoy science is advertised in family magazine 'The Best Times'. The Croydon Clocktower until 7 September with live events and workshops during the holidays. Adults £2, children £1. Box office 020 8232 1030. www.croydon.gov.uk/clocktower

SUMMER FUN

The CaF newsletter lists a variety of school holidays activities in London Boroughs Merton, Sutton, Croydon, Richmond and Kingston Some are for older children and adults and many include siblings. Tel. 020 8543 9068, email: swlondon@cafamily.org.uk www.cafamily.org.uk

LEARN TO BALANCE

If you know a child or adult who wants to learn to balance on a bicycle, the article 'Mastering a Pedal Cycle' in a past Newsletter has been rewritten and is available from your editor on paper, by email, or on our website. It is set out in easy steps with information on choice and adjustments.

WATER CREATURES

When going to the beach or other natural water, take along an unbreakable transparent container. Dip it in the water and your children will be fascinated by the tiny creatures you collect. Put them back carefully of course.

MELODY

This new organisation, founded in Birmingham by Rosie Cross, is encouraging children with learning difficulties to make music. Rosie is convinced many more with Down's syndrome can play the piano and other instruments. For a copy of Melody's enthusiastic and practical newsletter: Rosemary Cross, 52 Woodland Road, Northfield, Birmingham B31 2HT tel. 0121 628 3300, email: rosiepiano1@aol.com (or your editor). There is also a video.

FUN WITH NUMBERS

A cheerful leaflet headed 'Learning about mathematics at home and at school' is full of simple ideas to help our children visually and practically to increase their ability with numbers. It is from The Basic Skills Agency with The National Numeracy Strategy. There is a companion: 'Learning to read and write at home and at school', also from The Basic Skills Agency tel. 020 7405 4017, www.basic-skills.co.uk

A set of A5 leaflets has been produced by Beam Education (tel. 020 7684 3323) which give parents ideas on ways to encourage their children in Years 1 - 5. Simple fun and games, indoors and out, with valuable results! www.beam.co.uk

In 1999 the Department for Education and Employment published a 24 page A5 booklet (ref. IAAUMY2) entitled 'It all adds up' - bursting with bright ideas for making maths fun. Tel. 0870 000 2288, www.dfes.gov.uk

DIARY DATES

Sunday 21 September dsOK trustees meeting

Saturday 11 October DSA AGM

Saturday 22 November Open Day with DownsEd team

2004

Sunday 18 January dsOK trustees meeting

Saturday 8 May dsOK Open Day and AGM