Dear Parents and Friends,

Greetings from your trustees. We all look forward to meeting you on 7th May and at the picnic on 3rd July. For our Open Day in May, Wills and teeth are the main subjects. Although maybe not our first choice for a friendly chat, we all need to understand about Wills and Trusts, and we all need the specific information about the teeth and gums of our child or adult with Down’s syndrome. But there is much more to our Open Days than sitting listening to talks. They provide a great opportunity to meet and chat with other parents as well as professionals who are interested in the health, well-being and future life of our family member with Down’s syndrome. As usual, the after lunch speaker will be a young adult with Down’s syndrome who is looking forward to speaking to you about her life so far and the varied activities she enjoys. Please be sure to book and come!

OPEN DAY SMALL CRÊCHE

Whilst we love to meet your children, keeping them amused in a confined space with volunteers in charge is hardly fair on anyone involved. Please, therefore, endeavour to make arrangements for your youngsters to be looked after while you attend the Open Day. You will have noticed in our recent newsletters references to various plans for social gatherings. We know it is important for the brothers and sisters of a child with Down’s syndrome to meet other families and we invite you to support these events instead of hoping our crêche will provide that social contact.

VOLUNTEER TRUSTEES

Downsyndrome OK is managed and run by your trustees who are all volunteers. Our meetings are held in members’ homes on Sunday afternoons when a great many decisions are taken. New trustees will be welcome especially if your baby is very new or you live in Sussex (or both). You can find out more from a current trustee or during the Open Day on 7th May when all members and friends will be most welcome to meet us and find out more.

BALLET FOR CHILDREN

A parent has told us of London Children’s Ballet tickets being available at £1 for charities and schools for a performance at the Peacock Theatre (Portugal Street, London WC2A 2HT, near Holborn and Temple stations) on Thursday 19th May at 2.30pm. We understand these performances are excellent - a fine afternoon’s entertainment by a very professional company.

Contact: Mrs Deborah Flack, The London Children’s Ballet, 73 Charles Square, London W10 6EJ, Tel. 020 8969 1555 (Fax. 020 8969 3555)

www.londonchildrensballet.com/
www.sadlerswells.com/peacock/2005_2006/lcb.asp

AWARENESS WEEK PLANS

For many readers, before we began to learn the facts about Down’s syndrome, there were many myths which perhaps gave us fear or deep concerns about the future of our baby. Your trustees are interested in creating leaflets to dispel those myths. Please email us at info@downsyndromeOK.org.uk if you would like to take part in this project or send your ideas to Helen Long.

Awareness week this year runs from 6 - 13 June. If you organise an event which will raise funds, remember to make it clear whether the funds will be for DSA, dsOK or your local group.

TORY RESEARCH

The newsletter of Down’s Syndrome Extra 21 reports that the Conservative party is investigating whether children with disabilities should be taken out of mainstream schools and educated in special schools. As local candidates seek support this could be a useful line of questioning.

MORAL DILEMMA

Thank you, Gill Hayes, for this: "If we have the technological know-how to eliminate disability and disease from the gene pool, do we or do we not have the moral obligation to do so?" This is the question being posed in a new documentary which will include discussion with people at the forefront of the technology who argue that we do have this obligation, as well as people who feel that it is a modern day form of eugenics. The documentary makers would like to talk to people affected by this debate, including parents with disabled children who have a view on this issue. If you would like to know more, or take part Tel: 0117 9542262 or e-mail: littlemisshap@hotmail.com .

FPLD

The Foundation for People with Learning Disabilities, part of the Mental Health Foundation, publishes newsletters and organises conferences, many of which have been reported from time to time in dsOK news. We have been notified of their change of address to...

Sea Containers House
20 Upper Ground
London
SE1 9PD

www.learningdisabilities.org.uk

Their Winter/Spring edition reports results of much important research. Shaping the Future Together, Count Us In and Healthy Lives could all be relevant where there is an adult with Down’s syndrome or other learning difficulty. There is now a lively online discussion forum open to people with learning disabilities and carers:
for information contact Neil Morris: nmorris@fpld.org.uk

SCOTTISH FOCUS GROUPS

The Spring 2005 newsletter of Down’s Syndrome Scotland reports on some Focus Groups which have nearly completed their studies and others which are about to start. DSS’s new website was launched in February and prides itself on having accurate information. Although dsOK are members, we naturally only receive one copy of their newsletter but all pages are usually available for reading on their website www.dsscotland.org.uk and recommended. If you have not read the Winter edition, that is also full of interesting reports.

GETTING ACTIVE

The simplest advice to anyone with a weight problem is "move more, eat less!" However for adults with learning difficulties accessing an activity which motivates them to ’move more’ can be difficult and not only for the person but also for parents who feel they are of the wrong generation.

Sutton Mencap have a new Inclusion Development Worker funded for three years by Sport England as part of an Active London Project. If your adult lives in the London Borough of Sutton, contact Sutton Mencap on 020 8647 8600. Other areas could well have someone similar.

A paragraph in the Winter/Spring edition of Foundation Stones reminds us that the mental health needs of people with learning disabilities are often neglected and that exercise actually acts as a preventive medicine against anxiety and depression; a strong immune system makes the mind better able to cope with life’s stresses and strains.

CLEARING CATARRH

It is unfortunate that, because of the skeletal structure of the head of the young child with Down’s syndrome, a build up of catarrh is common. Down’s syndrome Extra 21 have found an advertisement for a NUK nasal decongester which apparently is suitable for use with babies. It is available from pharmacies nationwide and costs around £3.20. If any reader has experience would you share it with us?

BACK CARE BAGS

A member recommends Active Backcare School Bags which help to prevent damage to young spines by spreading and cushioning the load. There are different sizes for infants, juniors and seniors, all offered in black or navy with a white reflective stripe. The recommended bag weights in relation to body weight are printed on each bag, as your editor was shown by the proud teenage wearer (who has Down’s syndrome).

More details from...

Caring Touch Ltd.
Chislehurst Business Centre
1 Bromley Lane,
Chislehurst
Kent
BR7 6LH

Tel/fax: 020 8467 7979
e-mail: sales@caringtouch.co.uk

www.caringtouch.co.uk

BackCare is a registered charity.

BODY AND PRIVACY

Our Secretary has received a flier about animated sex education videos and a DVD for people with learning disabilities. Many respected organisations, including the Down Syndrome Educational Trust and the Family Planning Association, recommend these resources especially for group discussions. All three videos and the DVD cost £150 plus VAT but individual videos are from £39 plus VAT. Information packs are included.

Order from...

Life Support Productions
PO Box 2127
London
NW1 6RZ

Tel/Fax: 020 7723 7520

www.lifesupportproductions.co.uk

(Is this something members would like to see in our downsyndrome OK library? - Ed. Email us please!!)

STAMMERING

The magazine of the British Stammering Association, Speaking Out, always contains helpful information. The Summer 2004 edition, in addition to reporting encouraging stories about people, lists many books and publications to assist parents, children, teenagers and even employers. Whilst stammering is not particularly common, for those with dysfluency or their parents, such information can be invaluable.
Contact the BSA at...

15 Old Ford Road
London
E2 9PJ

Tel: 020 8983 1003
Helpline: 0845 603 2001
e-mail: mail@stammering.org

www.stammering.org

CORALI DANCERS

An email from a parent alerted your editor to a Dance presentation at Tate Modern and I popped up to London to join an audience of about 100 people to watch Bethan Kendrick and Anthony Hannon taking part in two fascinating shows in modern dance entitled Kissed and Refrain. Bethan had herself choreographed the second. Others with Down’s syndrome, including Nick Melrose (stage name), were in the cast of seven dancers with learning difficulties for these slick, funky and very stylish creations. Well done to all of you!

For Corali details tel: 020 7633 0555

www.corali.org.uk

SUPER COOK, GINA

Early in February, Georgina Hulme took part in Ready Steady Cook with another Special Olympian. Gina, a swimming gold medallist with Down’s syndrome, also won in this programme.

KEEP UP THE GOOD WORK

Trustee, Bambina Gonzalves, has received an encouraging article from her brother which she would like to share. It is too long for this edition but is worth reading to the end so visit our website to read it there in full or ask for it to be emailed to you:
"Do the right thing. It will gratify some people and astonish the rest" - Mark Twain [Samuel Langhorne Clemens] (1835-1910).
Brian was a boy with Down’s Syndrome. He was taking several medications. Brian came from a nurturing family; his mother was a teacher and wanted what was best for him. He exhibited no language and was considerably behind his other friends with Down’s Syndrome.? The story reports that a noun program was set up at school but Brian showed little interest and sucked his thumb. He was then paired with a child who was interested in the noun program and suddenly the two were fighting about who was next to pick a picture. Brian’s language gradually became his best skill.
"Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did" - Mark Twain. The story continues referring to more successes with other children with thoughtful teachers and other quotes including a Danish proverb: "Act in the valley so that you need not fear those who stand on the hill."

dsOK LIBRARY

Most heartfelt thanks to Mrs. Maggie Almrott who has given house room to our Library for many years but now finds family commitments make this difficult.
The trustees are determined to continue to make helpful books available to you all at our Open Meetings and Education Days. Having the opportunity to handle and browse will enable you to decide whether to buy the book or pay the Library while you borrow it then receive back most of your deposit on its safe return. A list of titles is being prepared. Your editor is always pleased to report on details of any book(s) you have especially enjoyed or found helpful.

CONTACT A FAMILY

Contact a Family is a UK based registered charity for families with children with a disability. It offers a helpline 0808 808 3555 and website www.cafamily.org.uk

USEFUL BOOKLET - FREE

A Contact a family newsletter tells of a booklet which includes tips to help children who have difficulties with language, play and social skills. Six pages with sections on eating, sleeping and toileting, play, behaviour and routine, and language and interaction. Ring the Children’s Information Service on 020 8770 6000 for a copy.

HEARING IMPAIRED GROUP

A group is starting in Merton on 21st April at 7 pm to enable families with a child with a hearing impairment to get together, socialise and get to know each other. As we are all aware, deafness can be the cause of great loneliness and we wish this group every success. Contact Liz de Freitas (020 8288 5614) or our trustee, Bambina Gonzalves.

TALKING CLOCKS

Easy to see, or talking, watches and clocks are available from the Royal National Institute for the Blind and many local centres such as the Surrey Association for the Visually Impaired at Fetcham (tel. 01372377701). Many Surrey libraries also have useful technology and offer training, too.

GROWING OUR FUNDS

The attractive booklet of flowers and bulbs was sent with your last newsletter in the hope you and your friends would order garden and house plants from Suttons Seeds for the benefit of your homes and of dsOK. Our trustee, Donna Self, has received some orders and is looking forward to hearing from the rest of our members very soon. There are planting dates against many of the attractive items in the catalogue. We encourage you to look through it again and send the order form back to Donna post haste with your cheque made out to downsyndrome OK. The funds you raise for dsOK will benefit members’ children and many others with Down’s syndrome.

EASY2NAME

Sales of these excellent labels - for sticking, sewing or ironing - are still bringing in income. A wide range of colours and various sizes are available, dishwasher, microwave, steriliser and drier resistant! Please continue to order your needs for identifying your belongings, contacting Mrs. Jo Tofts for fresh order forms. www.easy2name.com and mention downsyndromeOK.

BEST WISHES TO GILL

We are sorry to learn that funding will not continue after September for our South East Region Development Officer so Gill Hayes will be leaving the DSA.
We thank her for her contribution to the Association’s work including her informative newsletters.

EDUCATION DAY

Trustee, Helen Long, has already booked first class speakers for our next Education Day which will take place on Saturday, 1st October, 9.30 - 4.30, for both parents and professionals. You have good notice to try to persuade your child’s teacher or learning support assistant to come along. Topics to be covered will be Numicon, speech & language and behaviour. Your trustees believe these days are so vital for the education of your child with Down’s syndrome that downsyndrome OK will be subsidising costs. Full details will be on our website when finalised and the programme will be included with our summer newsletter. There will be no crêche.

DOWNSED CONFERENCE

The Down Syndrome Educational Trust at Portsmouth is holding its 4th international conference on 15th - 18th September 2005. The title is Developmental Issues in Down Syndrome: Early intervention and school education - from research to practice.
Full details tel. 023 9285 5330 or www.downsed.org/conference2005

TEACHING MATH

The newsletter of Down’s Syndrome Extra 21 (formerly DSA NE Thames Branch) reviews favourably a book entitled Teaching Math to people with Down syndrome by Deanna Horstmeier PhD. Published July 2004 in paperback by Woodbine House, it costs £9.68. www.amazon.co.uk

REX BRINKWORTH AND LANGDON DOWN

In the January 2005 edition of our newsletter I stated that Dr. Langdon Down thought, in the 1860s, that those with Down’s syndrome could not learn. Thank you, parent Sarah Rutter, former Information Department Manager at the DSA, for a most helpful letter explaining that in fact the opposite was true. I apologise most sincerely for having been misled by the word "idiot" which I understood was used by Dr. Down, which has clearly changed in meaning from the doctor’s times. Sarah Rutter writes: "Dr. John Langdon Down was a pioneer in the field of learning disabilities. One reason he moved away from Earlswood was because the hospital governors there did not agree with his wife, Mary, teaching the patients. Unfortunately, Dr. Down’s views were not taken up by the majority of his contemporaries nor by many of his successors". Read the full letter on our website and visit the story of Dr. Down at the Langdon Down Centre at Teddington, now DSA national office.

dsOK MEMBERSHIP CONTACTS

Downsyndrome OK membership is free unless you are not a member of the Down’s Syndrome Association. Therefore, please be sure to keep up your DSA membership to support their work and ours. Benefits of dsOK membership include our newsletter, open meetings and the ability to join our Parent Contact List. However, as this now includes more than 200 families, we are considering adopting the method used by Downsyndrome extra 21 (formerly DSA North East Thames Branch) who simply have a contact person in many centres of population. Talk to a dsOK trustee if you feel this is a way in which you could contribute to our efforts. If at any time you decide to take your name off the Parent Contact List, please contact Janine Brewster, preferably in writing (mail and email address on reverse). Updated copies of the Lists will normally only be posted with our newsletter to avoid extra postage.

DCA NEWS

When we were still The Down’s Children’s Association, issue No. 44 of the national newsletter for February 1986 contained some interesting reports:
1. Professor Brian Stratford and J. Steele discovered, by studying two areas, that the prevalence in the country of people with Down’s syndrome at that time was probably 4.63 per 10,000. Their studies covered Sheffield and Buckinghamshire which had comparable populations and numbers of people with Down’s syndrome. They estimated a total of around 26,000 people with Down’s syndrome in the UK then which they believed would increase to 27,000 in 2010.
2. The Secretary of State for Education and Science said, at the national AGM in Birmingham, that he felt the government was right to legislate for integration with a view to bringing in the full notion of integration by the end of the century. He also felt that there would still be children whose needs would best be served by a Special School. In 1986 that same government gave £1.2m to set up Portage schemes across the country.
3. A parent who recorded her little girl’s progress with photographs then made use of them to help to develop language, sequencing and memory. At developmental assessments the photographs showed what her daughter was actually achieving in a natural setting as opposed to artificial testing situations.
4. In 1986 the Association was arranging to become The Down’s Syndrome Association.
5. Papers were being sent in for the International Congress on Down’s syndrome to be held in Brighton in 1986. It was at this conference we were asked to try to say "baby or child with Down’s syndrome" instead of "Down’s baby" or "Down’s child" which the earlier names of the Association had encouraged.

EXCEPTIONAL STORIES

The latest edition of the newsletter of Downsyndrome Extra 21 reports a delightful book of photographs with stories by mothers about their child with Down’s syndrome. The title is Aussergewöhnlich which means Exceptional. If you can read a little German it will be even more special but the writer of the article, Sabine Nussey , finds it worth having for the really beautiful pictures.

Order it from...

One story is of an 8 year old boy who asked if a friend’s 12 month old baby had a Chinese father. The mum, between laughter and tears, explained her daughter had Down syndrome. In response to "And, what’s that?" she explained that in every one of the billions of her cells, the child had one more chromosome than other people. The boy looked at the baby with big eyes and, visibly impressed, said "Wow, that’s cool!".

MEET THE MEMBERS

The picnic for all readers and your families will take place in Tilgate Park near Crawley on Sunday 3rd July, wet or fine, and will include a treasure hunt for all ages. Join us from noon - 4.30, with your picnic, and enable your families to meet others with brothers and sisters with Down’s syndrome. If you come by car, it costs only £1 to park. We will meet near the children’s playground which is close to the drive down hill to the car park. If there are activities you would like to lead or share, please have a word with a trustee to help with planning.

DISCO SOCIAL

Your trustees are considering organising a disco with fish and chip supper, possibly on a Friday or Saturday evening, with a separate room so that parents can chat if they prefer to do so. Next March is in mind near Byfleet or at Teddington. Please pass your views to a trustee.

EAST BERKSHIRE GROUP

February and March 2005 Newsletters of the East Berkshire Down’s Syndrome Support Group as usual include useful, serious and fun activities.

Apparently, UCI cinemas will issue a free adult ticket for carers of disabled children. The Group is planning a visit to Thorpe Park at the end of the summer holidays. Perhaps some of our members would like to meet them there? Or if you are moving to their area, you could contact Bozena Hunt 01344 622644 bozenahunt@hotmail.com

DSRF
The Down’s Syndrome Research Foundation is currently updating its mailing list and invites new or lapsed members to get in touch. Founder and parent, Peter Elliott, spoke at our Open Day in Guildford some years ago and was instrumental in creating the ICH Antioxidant Research Project to which we have contributed and on which we have received reports from the DSA. DSRF are at present preparing a booklet Bright Beginnings for new parents but their long time goal has been to create specialist clinics around the country to ensure early detection of threats to health and the provision of treatments and related research. It is not practical to expect overworked GPs all to become experts on Down’s syndrome. Researchers are also needed who are willing to study the metabolic consequences of having 300 extra genes and then tell us what therapies may help our children and young people. A healthy child will always have better mental abilities. Past conferences organised in London by DSRF have been full of valuable information. Their next is planned for September 2005. To send a donation, or to join the Friends of the DSRF,
contact...

DATES FOR YOUR DIARY

Saturday 7 May   dsOK Open Day and AGM
Monday 6 to Sunday 12 June   Awareness Week
Sunday 3 July   picnic at Tilgate Park
Sunday 10 July   dsOK trustees’ meeting
Sunday 11 September   dsOK trustees’ meeting
Saturday 1 October   Education Day
Saturday 15 October   DSA AGM
Saturday 20 May 2006   dsOK Open Day and AGM 

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