Dear Parents and Friends

AWARENESS WEEK 5 - 11 JUNE 2006
Down’s Syndrome Awareness Week misses half term for most of us this year giving the opportunity to arrange a different type of activity if you can. National office offer a pack to assist with your fundraising or publicity event. Your dsOK trustees (listed on the back page) will be happy to hear and discuss your ideas. Please report back on your cake sale, leaflet, photo display, competition, party, giving a talk or whatever. Other members could adopt your idea next year.

CARSHALTON CARNIVAL SATURDAY 10 JUNE
This major annual event will take place in Awareness Week and your trustees plan to set up an information stand in Carshalton Park (Ruskin Road) with craft activities for children. The opportunity will be taken to talk about Down’s syndrome to the adults who visit our stall. Please contact trustee, Helen Pattison, as soon as possible if you can be free to help or support and join the fun.

PICNIC TIME SUNDAY 2 JULY
It was most successful last year and you are all invited. Bring your families and friends and join the fun at Tilgate Park near Crawley on Sunday 2 July from noon. This is the ideal opportunity for your children who do not have Down’s syndrome, and their friends, to meet others as well as others with Down’s syndrome. Parents of course benefit from sharing time with other parents more informally than during our information days. If you would like to bring an activity to share, please do so, but feel free just to come and enjoy the time out of doors. However, you are advised to bring something to sit on as well as your picnic.

BLUE BADGE QUESTIONNAIRE
The information requested in the questionnaire sent out with February dsOK news was created in response to the desire of Tom Brake, MP, then the LibDem spokesman on transport, to find out about travelling with someone with a disability. We understand that Tom is still keen to improve matters so the more replies we have, the better. A copy is on our website if you have not yet got around to completing one. Or trustee, Karen Edmonds, will be pleased to send a replacement.

Trustee, Helen Pattison, reports an interactive map of Greater London for finding parking for blue badge holders: www.parkingforbluebadges.com
This tells where you can buy map books with Blue Badge parking details: www.thepieguide.com

INFORMATION DAY SATURDAY 18 NOVEMBER
The date is fixed, the subject will be education, watch the next newsletter and our website for announcements about speakers. Meantime, be sure to keep the day free and encourage your child’s teachers and LSAs to consider attending, too.

EYESIGHT RESEARCH
All parents will find this of interest and, indeed, if you are a teacher, learning support assistant, social worker, nurse or anyone with an interest in eye tests for people with Down’s syndrome, and you would like to sit in on an eye examination to learn more, you are invited to make contact:

www.cardiff.ac.uk/optom/DownsSyndromeGroup

Mrs Sue Hobbs
Down’s Syndrome Vision Research Unit
School of Optometry and Vision Sciences
Redwood Building
King Edward VII Avenue
Cathays Park
Cardiff
CF10 3NB.
Tel. 02920 876163 (ask for Sue Hobbs, the Research Group Secretary)
email: Downssyndrome@cardiff.ac.uk

VISION IMPAIRED iPOD
From the Surrey Association for Visual Impairment newsletter we note they report on one iPod which can be controlled by a user with limited vision. This is the iPod Shuffle which has tactile buttons. Visit www.apple.com/uk

VISION IMPAIRED GAMES
A software developer, Steve Crawford, is designing talking computer programs with large fonts wherever possible to assist people with limited vision. The Surrey Association for Visual Impairment newsletter describes this technology as being self-voiced, hardly uses the mouse, and runs entirely from CDs. There are currently four games including Connect 4, which cost £20 each. In addition, there is also a Talking Typing Tutor which gives feedback on the pupil’s progress and costs £30. Tel. Steve on 07740 777364 or visit www.azabat.co.uk

LIBRARIES OFFER HELP
Surrey Libraries have a wide range of equipment and books etc. which enable people with vision impairment to access their services. Surrey residents should contact your local library, or tel. 01483 543599 or visit www.surreycc.gov.uk/libraries

CHECKING HEARING
The Spring edition of Down’s Syndrome Scotland’s news states people with learning difficulties are more likely than the rest of the population to have hearing difficulties and should therefore have easy access to appropriate health services. Inability to hear well will affect learning, independence, social inclusion and behaviour.

Read the article at www.dsscotland.org.uk

FRIENDSHIP OPPORTUNITIES
Young people with Down’s syndrome sometimes find it difficult to make friends, perhaps their peers develop more quickly and the one with Down’s feels left behind or left out. Your trustees would like to arrange more activities (such as the picnic - see page 7) so that your young person with Down’s syndrome grows up knowing others.

Please pass your ideas and suggestions to a trustee.

FRIENDSHIP BENCH
Given to a local school by two parents of pupils with learning difficulties, the Friendship Bench at Willow Bank Infant School in Woodley was opened by the Chairman of Wokingham District Council. The bench is circular and will seat up to 12 children. They will be able to talk face to face and any child who feels lonely can go and sit on it. It is hoped it will help break the ice in playtime and raise self-esteem for children who have difficulty making friends. An idea to copy at your child’s school?

DSS SURVEYS
Down’s Syndrome Scotland are inviting participation by children and adults with Down’s syndrome in two surveys. A New York clinic with 16 years experience has initiated the studies. The first survey will measure the presence or absence of certain gastro-intestinal problems and complaints as these are common in those with Down’s syndrome. The second relates to ‘self-talk’ (talking to oneself, a common practice of people with Down’s syndrome and discussed in our Branch Newsletter No. 42 of October 2001). Copies may be obtained from Dr. Heather Wilkinson at the Centre for Research on Families and Relationships, 23 Buccleuch Place, University of Edinburgh, Edinburgh EH8 9LN, 0131 651 1832 (fax 0131 651 1833) or email h.wilkinson@ed.ac.uk It is hoped parents or people with Down’s syndrome will complete both questionnaires but just one will help. Read the full article in ds scotland news www.dsscotland.org.uk

WITNESSES TO CHANGE
This ‘captivating’ historical book is recommended by a parent member in the Spring edition of Down’s Syndrome Scotland’s news. The full title is Witnesses to Change, Families, Learning Difficulties and History published by The British Institute of Learning Disabilities ISBN 1 904082 75 0. The book charts bringing up a child with learning difficulties in the 1920s to the present day.

TV LESSONS
The BBC are currently creating a series for the autumn which will be used by the Open University to broaden the understanding of Down’s syndrome and other learning disabilities. Local members who have been invited to contribute background information hope this has been interpreted accurately for the benefit of those who will learn from the programmes when broadcast.

We also understand a programme is being made which will feature mothers who were very young when their baby with Down’s syndrome was born.

NEW DEAL FOR WORK
A leaflet referring to the Richmond Fellowship, a registered charity, describes a New Deal for Disabled people, listing many ways in which anyone with a disability may be helped to find and continue paid employment. Guidance on benefits is also offered. The contact office is at Bedford House, 215 Balham High Road, London SW17 7BQ tel. 020 8767 1900, email: rfet.wandsworth@richmondfellowship.org.uk www.richmondfellowship.org.uk

REPEATING IDEAS
Providing new information for longstanding readers of this newsletter, as well as popping in hints from past editions which could be of value to newer readers, is a constant challenge to your editor. A mother of a two year old has told me she is finding our earlier issues archived on our website of great value. But not all readers are able to access the internet so the efforts to balance old and new will continue. You are strongly advised to file newsletters for when your child is older, situations change, and what is too far ahead now will be needed in the, possibly near, future, as you work towards increasing your son’s or daughter’s independence.

MERRY PUBLISHING
Kim and Mary Merry publish books which are fun, colourful, strong and will arouse children’s interest in reading and matching. Small pictures and parts may be detached and fixed back with velcro. The publishers are being invited to bring a selection to display or sell at our Information Day on 20 May at Leatherhead. Unfortunately www.merrypublications.com gives no other contact details but their postcode is RM4 1PB.

POPS FAMILY BOOKS
A frustrated Mum in Down’s Syndrome Scotland’s news Spring edition, apparently found reading schemes too complicated for her child so she wrote books for him herself to teach him the 200 most common words. (‘POP’ for ‘Plenty of Potential’!). For more information visit www.pops-resources.com The products are being used by teachers and are not only improving reading ability but speech and language as well. Well done, Marie!

CURRICULUM CD ROM FOR SCHOOLS
Cecilie Mackinnon, Down’s Syndrome Scotland Curriculum Development Officer, produces booklets and CD Roms to be used by schools to help a child with Down’s syndrome to participate in a specific area of the curriculum. Visit www.dsscotland.org.uk where you can read the article in dss news, Spring edition.

STEPPING STONES UK
We have heard more about this organisation, mentioned briefly in dsOK news No. 9. The late Rex Brinkworth, MBE, founder of the Down’s Syndrome Association in 1970, was one of the first to show that intensive early intervention for babies and children with Down’s syndrome is beneficial to maximise their potential to develop cognitive, physical, social and communication skills.

Stepping Stones UK offers a range of therapy services to children with developmental disabilities associated with Down’s Syndrome, a ‘one-stop’ approach to private speech and language therapy, physiotherapy and occupational therapy plus Makaton sign language training. Targets will be set for each child based on an assessment by their experienced and well qualified team and parents and carers will work towards the agreed targets in small group sessions.

Classes are held at The Wimbledon Club,
Wimbledon Park Road,
SW19 5AG
(opposite the All England Lawn Tennis Club) all day on Thursdays during term time only.
Tel. 020 8870 0478 or 079 0505 6829.

CHILD CAR SEATS
The Royal Society for the Prevention of Accidents (RoSPA) offers information on the regulations relating to seats for children and seat belts for coach and bus passengers. Visit www.rospa.com to update yourself, especially if you plan to purchase a seat.

EASY2NAME
Do remember this simple method of increasing dsOK funds by ordering your family’s name labels from Easy2Name, 2 Malthouse Cottages, Ecchinswell, Newbury, Berks, RG20 4UA, tel. 01635 298326, www.easy2name.com Be sure to mention you wish the commission to be paid to downsyndrome OK.

CRICKET FOR VISUALLY IMPAIRED
The Surrey Association for Visual Impairment newsletter describes the work of Andy Dalby-Welsh, Development Officer, London Community Cricket Association, who is encouraging children with vision impairment to play cricket. He also hopes to interest older children and adults and invites calls from would-be players in Surrey or London. Tel. 07786 238168.

GIRLGUIDING FUN
Members of the Guide Movement in London and South East England who have any disability are invited to take part in an Activity Day at Paxmead Riverside Base on Saturday 16 September 10.30 - 4pm. The cost will be £12 per head, including BBQ lunch, and a ‘wide variety of activities’ (boating, archery, music, challenges and campfire) will be run by enthusiastic experts.

Find out more from your Guide leader or tel. 020 8772 1751 email: path@girlguidinglaser.org.uk or by sending s.a.e. marked ‘Activity Day for members with disabilities: 16 September 2006’ to:

Pat Higgs,
Region Office,
3 Jaggard Way,
Wandsworth Common,
London SW12 8SG.

Guiders, helpers and friends are also invited @ £12. Closing date for booking will be 31 July 2006.

Paxmead is at Dockett Eddy Lane, Shepperton, Middlesex.

WILDLIFE
Sutton’s Ecology Centre at The Old Rectory, Festival Walk, Carshalton, offers a variety of fun activities for children with special needs from time to time. Tel. 020 8770 5820 or email: sec@sutton.gov.uk

GYMNASTICS
Sutton’s leisure centre at Westcroft, Carshalton, offers gymnastics classes for children with special needs aged 4 - 8. Tel. 020 8770 4800, www.SCL98.com

CARSHALTON DRAMA
From time to time there are vacancies in this music and drama class, now nearly 3 years old, which is held at the Thornton Road Centre, Carshalton, on a weekday after school. Children with Down’s syndrome aged 6 - 11 take part while brothers and sisters and their parents enjoy activities in a different space. Contact parent member, Kathy Maillet, on 020 8669 8942 if you would like your child to be included.

The West Berkshire Down’s Syndrome Group has a new editor and a most informative new WEST BERKSHIRE GROUP sletter. An Education Day is planned for Friday 6 October. A page on the result of research into the benefits of drama gives the aims of a drama group as: to encourage vocalisation, speech and other forms of communication through theatre games and exercises; to enable self-expression and to improve confidence and self-esteem through achievement

THANK YOU FOR FUNDRAISING
Trustee Janine Brewster’s husband, Damian Morrin and his friend Steven Payne are to be thanked most sincerely for running for us in the London Marathon. We are indeed grateful to them and to Mrs. Karen Stewart, another loyal supporter who has again sent a cheque from her charity catalogue. It has never been a condition of membership that parents must raise funds for our organisation but some parents and friends have this great skill and enthusiasm and we all appreciate their generosity.

CIRCLES OF SUPPORT
This is a report of a talk at St. George‘s Hospital Medical School in 1996 which impressed your editor then and is still relevant now. (DSA South West Thames Branch Newsletter No. 28 January 1997).

A parent, Lynne Elwell (herself seriously hearing impaired) had set up with friends a ‘Circle of Support‘ for her child with a learning difficulty. From an early age, all of us have built up a network of friends and colleagues - people we can turn to for advice, reassurance or celebration etc. Our young person with a learning disability might have difficulty doing this but has in many ways a greater need of such a circle than the rest of us. Lynne drew four circles of connectedness. She recommended that people with an interest in our offspring - whether family, professional, personal friends, a respite carer, specialists in education, spiritual matters or other interests - should meet regularly (monthly) and get to know them, their likes, dislikes and talents and their hopes, dreams and ambitions. Together they can gradually help the person with the learning difficulty to achieve a good quality of life.

BUYING A HOME
The group who spoke during the session before the talk on Circle of Support were Americans who had enabled their young people with learning difficulties to purchase a group home. Each resident owned their own room and the shared parts of the house had shared ownership. The house near Boston had been bought in 1983 and the residents had learned how to look after themselves. Some had their own mortgage whilst, for others, their parents had made the purchase. We were told Federal assistance was available for those unable to find the mortgage. Other houses had since been opened providing the benefits of a home of one‘s own - freedom, privacy, mobility, independence - for an increasing number of people with learning difficulties.

Editor‘s note: possibly both these presentations emphasise the importance of encouraging our young person to have in their area a circle of friends of a similar mental level as well as a circle of support.

^back to top