NEWS, number 3, February 2004

One of the special benefits of being a member of our organisation is that we are not alone in bringing up our child with Down's syndrome. On the phone and at our meetings there is always a warm welcome for new parents when you feel ready to make contact. For those of you not able to attend our November education day - we had a very long waiting list - we are repeating it, again with the DownsEd team, on Saturday 28 February, for parents, teachers and classroom assistants. Do come, or come again, and encourage professionals and governors from your child's school (and relatives and friends who influence your child) to book early. Please note, too, our annual Open Day has been fixed for Saturday 8 May 2004 for which a broad and attractive programme is being arranged. Full details will accompany the next dsOK news, to be published around Easter time.

Although we are affiliated to the Down's Syndrome Association and offer free membership to DSA members, we have to maintain our own membership records. If a membership application form is enclosed, please be sure to sign and return it. If it is marked FINAL REMINDER, please note that this is the last mailing you will receive from dsOK unless we hear from you.

GENEROUS DONATIONS

As a charity providing mainly a service of information to our members and professionals, we are always grateful for donations, large or small. One member raised £800 on the London to Brighton cycle ride and a trustee has sent us an incredible £1,500 earned on the Flora Ladies Run. Heartfelt thanks for these and many smaller contributions received during the past few months. All will be put to good use.

EASY2NAME

Remember to order your labels for the kit your family will be using when the summer comes! By using the order form supplied by dsOK, funds will be raised by a commission from EASY2NAME. Contact trustee, Jo Tofts, for more order forms - and encourage your family and friends to order, too! The labels are of good quality and suitable for garments, shoes, lunch boxes and sports equipment. They remain stuck even in the dishwasher, microwave and steriliser!

TALKING POINT

A note in Sutton Mencap's informative newsletter announces "the website that is sure to get tongues wagging". For professionals or parents concerned about a child's speech, visit www.talkingpoint.org.uk

NOW WE'RE TALKING

This 20 minute upbeat video has been produced by Tessa Duffy's Symbol UK and describes the vital work of Speech & Language Therapists and the importance of good communication skills for children and adults with Down's Syndrome. Many with Down's Syndrome, including dsOK's Laura Bailey, then 3 (see photo below, courtesy of Stewart Bailey), are featured, giving some very interesting and humorous interviews. Danny Mardell, who many of you will remember from the TV documentary, Fighting for Danny, assisted with the production. The video and a DVD are available from National Office.

AFTERLIFE

The newsletter of Downsyndrome extra 21 recommends this film, which will be on general release in 2004. A star character, Paula Sage, has Down's syndrome - what will happen to her when mother is no longer able to care. This 'heartwarming, life enhancing' film is in no way depressing.

AGEING

Professor Tony Holland's talk at the DSA national AGM in Kensington last October was most encouraging. Most parents of an adult with Down's syndrome are probably aware that Alzheimer's disease is common and tends to start earlier in people with Down's syndrome. Whilst this is to some extent true, Professor Holland explained that its diagnosis is not always correct. Symptoms of depression can at first be similar and depression is of course usually treatable. He explained that the frontal lobes in people with Down's syndrome are often less well developed making their reserve capacity rather low. They are therefore more easily affected by life changes - and these can, as we know, lead to depression. His advice was that the person with Down's syndrome who is perhaps becoming a little forgetful, or showing signs of personality change, should be checked for depression. His or her thyroid should be checked, too. Researcher Karen Dodd will be publishing this year. Thanks to Professor Holland for sharing so much helpful information with 'older' parents present.

FOUNDATION STONES

This newsletter of the Foundation for People with Learning Disabilities (part of the Mental Health Foundation) announced in November the merger of the Learning Disability Programme at King's College London with the Foundation. The Foundation will now have extra research and policy strength and provide more support, training and development services to organisations and individuals.

For details of the Count Us In project which helps young people who are leaving school, Jill Davies, 020 7802 0348 jdavies@fpld.org.uk

Person Centred Planning is about the person with a learning disability making plans about their life with people they trust. The Older Family Carers Initiative is working with others to support Learning Disability Partnership Boards. www.learningdisabilities.org.uk or Dalia Magrill tel. 020 7802 0329.

A new pack, Learning with Families, is a training resource funded by the Department of Health, available on 020 7802 0300.

VALUING HEALTH FOR ALL

This guide provides checklists for action for everyone concerned to improve the health of people with learning disabilities and costs £7.50 plus 10% p&p. Tel. 020 7802 0300 or email fpld@fpld.org.uk

CATARRH

The response to an enquiry about catarrh in the last DSA Journal omitted the advice of DSA founder, Rex Brinkworth MBE, (and that of Charing Cross Hospital doctor Bethan Davies and many DSA members) that Vitamin C helps to combat catarrh.

EXTRA 21

When DSA North East Thames became an affiliate of the DSA, they renamed themselves Downsyndrome extra 21, reflecting the name of their well-established glossy newsletter. They were launched on a sunny day in June and released 200 green and white balloons for a flying start. We wish them every success. There are many local support groups in their area and two information days are arranged (February and April), one with the DownsEd team. Parents' hotline 01277 365618 or email: downsyndromee21@aol.com

LEUKAEMIA

We have been contacted by a parent member whose little girl has been suffering from leukaemia. Are there other parents who would like to make contact with each other to share advice and experiences on leukaemia and Down's syndrome? In your editor's local paper this week the Royal Marsden hospital at Sutton, Surrey, has created a CD-ROM with a wealth of information for patients. It probably does not particularly relate to Down's syndrome but is free to patients with leukaemia at the hospital. Specialist nurse, Moira Stephens, led the work.

DIABETES QUESTIONNAIRE

We have received a request from a postgraduate Health Psychology student, Charliey Lee, who wishes to ask people with learning difficulties and diabetes to fill in three questionnaires at monthly intervals. The researcher is concerned that patients with learning difficulties may not have the best information for taking control of their health. Please contact Charliey for more information: 07779480925 or email: charliey_lee@hotmail.com . The postal address is Mill Place Farm, Kingscote, East Grinstead, West Sussex, RH19 4LG, tel. 01342 313869. People with learning difficulties, with or without Down's syndrome, are required for this work.

EDUCATION DAY LAST NOVEMBER

Sincere thanks are due to the trustees and their families and friends, and especially to the small working group whose excellent teamwork ensured a smoothly run and welcoming day at Dorchester Primary School, Worcester Park in November. Everyone who attended felt it had been a highly successful and useful day and we look forward to many more.

OPPOSITION

An excellent letter in a free local (Sutton/Epsom) paper caught the editor's eye. By Alex Hillman, young brother of a lady with Down's syndrome, it explained why neighbouring residents should not object to a house being converted for occupation by people with learning difficulties, including Down's syndrome. Our Chief Executive, Carol Boys, met a similar objection in Torquay. Congratulations to Carol on her interview on BBCTV Breakfast and with her son (another Alex) on Radio 4 on 8 January.

TEENAGE ISSUES

The DSA are holding a conference on teenage issues on Saturday 24 April at Chelmsford College. Speakers will be from Consent, Connexions and college staff. Contact DSA national office for details. It is not clear whether this is for young people, parents, or both.

A SIBLING WITH DOWN'S SYNDROME

Down's Syndrome Scotland have created positive, helpful information sheets for families where there is a brother or sister with Down's syndrome. There is a booklet for ages 5 - 12 and factsheets for teenagers and parents. Although offered free to DSS members, they would no doubt appreciate a large stamped envelope for your copies. DSS, 158/160 Balgreen Road, Edinburgh EH11 3AU, tel. 0131 313 4225 www.dsscotland.org.uk . Do remember, if you are moving to Scotland, there are many DSS local parent groups.

JADE'S STORY

We have been contacted from Canada by Gail Albrechtson who has written a 200 page book about a child with Down's syndrome, an endearing little girl whose whimsical, loving spirit captured the hearts of everyone she met. Titled Natural Harmony; Jade's Story, we understand it communicates a strong message about the importance of integration. ISBN 1-4120-0392-X, it costs a little over £10. Details are at http://www.trafford.com/robots/03-0761.html Biographies and Memoirs; Families and Relationships.

USEFUL CENTRES

From time to time parents hear of a useful centre - perhaps where their child can receive medical treatment or have fun. Your trustees would like to create a directory of these to help other parents, especially new parents or members moving into the area. Please send the details to a trustee, by post, phone or email - please don't hide your precious find under a bush! Sharing improves the quality of everyone's lives. Thank you.

CARSHALTON DRAMA

Good news from Kathy Maillet that the drama and music group which began last September is being greatly enjoyed. There is room for one or two more children with Down's syndrome aged 6 - 11. Classes take place at the Thornton Road Centre, Carshalton, and cost £4 per session. The teacher is Emma Foreman BA Hons PGCE who runs "Jumpin' Jacks" and is an experienced music and drama teacher for young children. Telephone Kathy on 020 8669 8942. email: kathy@champagne23.freeserve.co.uk . Kathy has found that brothers and sisters not in the class happily play in another space whilst parents benefit from meeting with other parents with a child with Down's syndrome.

STAGECOACH

We have been advised that the well-known drama and dance organisation, Stagecoach, has a charitable trust whose aim is to include children with special needs. The trust is called InterAct and sessions are for young people aged 10 - 16, special needs and mainstream, who are invited onto the programme at no charge. InterAct is active in Hounslow, Hampton and Walton-on-Thames. For details of these and groups in other areas, contact the Principal, Michael McNulty, on 01932 254333.

PROJECT FOR RICHMOND CHILDREN

Alison Vernon, Adult Counselling Co-ordinator, has written to inform dsOK of services being offered in Richmond borough. Ms Vernon works at the Project for Children with Special Needs and reports that free confidential counselling/psychotherapy services are available to parents and carers of children with special needs. Counselling will also shortly be offered for children. Tel. 020 8831 6182, email: projectchildren@enterprise.net website:www.projectchildren.org.uk

SURE START

Many of us have heard of Sure Start, practical advice for parents, especially mothers. An article in the Autumn 2003 edition of inclusion reports on the success of Sure Start Plus and the benefits of this service to young fathers. Not just help with nutritious yet economical food for the baby and the importance of play but also money management, college and career guidance. For information, tel. 0870 000 2288, info.surestart@dfes.gsi.gov.uk, www.surestart.gov.uk

WAVING NOT DROWNING

We have received a newsletter from this organisation which is for parents of disabled children who work or want to work. Conferences are arranged and a forum for Greater London members is taking place on 7 February. A competition to find the best boss is also held - nominations by 1 April. Contact Janet Mearns, Working Families, 1-3 Berry Street, London EC1V 0AA, 020 7523 7423, janetmearns@workingfamilies.org.uk

MAINSTREAM EDUCATION

We have found that teachers and assistants are asking if they can make contact with other professionals with a child with Down's syndrome in their class. We are considering setting up a Contact List (similar to that for parents) which we believe could help professionals who are feeling unsure of their ability with children with Down's syndrome. If your child with Down's syndrome is currently in a mainstream pre-school, primary or secondary school, would you please give Liz England the name and address of the school and comments on this idea.

TRANSITION

Possibly one of the most worrying stages in our child's education is the move from primary to secondary school. A conference was held recently in Essex during which some of the differences between primary and secondary school were highlighted. These differences need to be explained in good time, and repeated in detail, to help the child's acceptance of the new experiences.

BABY MUST CHEW

Your editor received criticism from a Speech and Language Therapist in Chertsey for her statement that a baby who doesn't chew before a year may never speak. Consultation with Tessa Duffy means this statement should be modified as some children who do not chew in their first year do master speech. It was the Association's founder, Rex Brinkworth MBE, who discovered in his lifelong study of children with Down's syndrome that solids can be rejected if the baby has not had the opportunity to become familiar with them in the first 8 - 12 months. Another expert recommends, to strengthen the speech muscles, ask the child to lie on his or her back then speak (e.g. recite the alphabet) or, better still, sing! One parent member is finding this exercise is improving her daughter's limited speech.

READING

In our busy lives, we all try to help our children with reading. It is difficult to know how. A leaflet from the Basic Skills Agency: Learning to read and write at home and at school suggests, when reading along with them, pause, then prompt, then praise. www.basic-skills.co.uk . Guidance in Why Schoolchildren Can't Read (Bonnie Macmillan, Inst. of Economic Affairs, £12) and Why Children Can't Read (Diane McGuinness, Penguin, £8.99) could also be useful publications.

RELUCTANT READERS

The newsletter of DSA affiliate Downsyndrome extra 21 reports Barrington Stoke, publishers of fiction for reluctant readers, have released their best selling stories on cassette to encourage a positive attitude towards reading. Available from good book shops or tel. 01313 154933 or www.barringtonstoke.co.uk

IMPROVING NUMERACY

Many parents find that their youngster with Down's syndrome is rather slower at learning about numbers than reading. Reports on Kumon Maths classes show many with Down's progress well with their individually based fun teaching. Another organisation's leaflet, entitled Makes Maths easy, describing 'Number Works' classes could be helpful to parents. For contact in Sutton tel. 020 8642 8884, in Kingston 020 8541 3222 and in Wimbledon 020 8543 7333. www.numberworks.com . Neither scheme is free.

MEMBERSHIP

Nearly 300 members of the 500 Down's Syndrome Association members in our area have returned their buff form to signify they want to be dsOK members as well. Membership is free and open to DSA members, including people with Down's syndrome, but you will drop off the dsOK circulation list unless you apply to join. If an application form is enclosed, please sign and return it to keep yourself and family in touch with local activities. It will fit in a window envelope if you wish. All the trustees are parents and look forward to your continued support. Remember to renew your DSA membership each year, too, to strengthen the vital work of the national organisation. The greater the membership, the more the DSA will be recognised as the authority on Down's syndrome.

BEING ACTIVE

Advice towards fitness is 'Move More, Eat Less'! Many local authorities offer a variety of activities for children and adults with disabilities. Whatever your need it is probable there are integrated or exclusive use sessions. You could be surprised what can be achieved with enthusiastic leadership and the right support.

ACTION FOR LEISURE

The Contact a family local newsletter, refers to this small national charity which is working to promote play, leisure and recreation for disabled children. www.actionforleisure.org.uk

WARM IN BED

A parent in Caterham found her daughter with Down's syndrome would not stay under the duvet in bed. She tells us she bought a lovely fleecy all-in-one sleep-suit from the La Redoute catalogue: sizes available up to age 12, the largest costing £15 in the winter 2003 edition.

HOUNSLOW

We have been contacted by a Community Nurse, new to his job, who would like to be in touch with parents and carers of adults with Down's syndrome and other learning disabilities in the Hounslow area. He is particularly interested in encouraging people with learning disabilities to access appropriate health care. Please ask our Chairman to email your contact details if you would like to help.

BRUSHING TEETH

Teaching our children to brush their teeth well is vital. When the child has Down's syndrome, this is even more important because s/he could still be using milk teeth years into adult life. (Irregular dentition and absence of some second teeth are common). In addition, the shape of the mouth makes it more tricky to fit dentures. A suggestion in Radio Times last October could help. Hold the bristles against the teeth and brush in the direction of growth while saying: "Up like a rocket, down like the rain, back and forth like a choo-choo train". Our children often learn well if there are simple words to emphasise the task. Thanks to Dr. Barry Rubinoff on Living's Planet Parent. It could be advisable to remind the child they are only trying to remove soft food not the surface of the teeth - encourage gentle brushing!

DIARY DATES

Saturday 28 February Education Day

Sunday 14 March dsOK trustees' meeting

Saturday 8 May dsOK Open Day and AGM

Sunday 4 July dsOK trustees' meeting

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

Sunday 19 September dsOK trustees' meeting

Saturday 6 November (provisional) Open Day on Numicon.

Saturday 7 May 2005 dsOK Open Day and AGM

PARENT CONTACT LISTS

Many readers have applied to join this very useful service run for members over a number of years by first the Branch and now by dsOK. Provided your DSA/dsOK membership is maintained, you will be receiving the list for your area in the next few weeks. It is not too late to join, especially if you are now applying for membership of dsOK.

Current contacts for dsOK trustees