PRACTICAL EDUCATION
On Saturday 22 November, 10 - 4, experts from DownsEd at Portsmouth are coming to share their extensive knowledge and understanding of how children with Down's syndrome learn. This event for parents and professionals will be in Worcester Park (between Kingston-upon-Thames and Sutton, Surrey). Note the date now and notify your child's teaching and support staff. Benefit from a day with the DownsEd team without a trip to Portsmouth! Details in the next Newsletter or soon on our website. For more information you can email us on email us on info@downsyndrome.org.uk.
For DownsEd brochures tel. 02392 855330, website www.downsed.org
TRAINING IDEA
While the Deputy Head and classroom assistants from a Primary School attended a course at DownsEd, Portsmouth, parents stood in for them. Perhaps your child's school will copy?
GENEROUS ROTARY
Liz England reports the donation of an amazing sum from Heston and Isleworth Rotary Club.
In addition, this most generous group is holding a fundraising Gala Night at Richmond Theatre on Thursday 19th June, 7 pm for 7.45 pm. The show is 42nd Street. Half the proceeds will come to us. SEE DETAILS, contacts. For this fabulous evening (tickets £ 22.50) contact Liz - see Committee list.
COSTA RICA CYCLE RIDE
The Branch congratulates our Treasurer, Stewart Bailey and his two friends on their remarkable achievement in raising from sponsorship a superb sum for the Branch.
The cyclists generously gave their own costs as an additional donation. Stewart's report on his return referred to successfully cycling across from the Costa Rican Pacific coast to the Caribbean coast followed by three days of severe flooding which wiped out bridges on their planned route.
They looped back via boat, bike and bus during which one of their small boats broke down in a crocodile infested river!
Stunning and diverse scenery, great food, and feeling they were a part of the country, as there is no mass tourism, left lasting memories. The Californian tour organiser will encourage others to cycle for charity and gave one hundred dollars for our Branch. He aims to publish information about Down's syndrome in a Costa Rican newspaper. A small cousin of the support vehicle driver has Down's syndrome. Happily, says Stewart. she was living at home with her family and was expected soon to start at a special school. See some of Stewart's photographs at the Branch Open Day on 10 May at Purley!
GREAT NORTH RUN
Committee member, Helen Long, reports lots of sums raised by her family in the Junior Great North Run. Thank you to daughter, Katie, and to nephew and niece, Jake and Sophie, who ran for our Branch in this fundraising event.
CHRISTMAS LIGHTS
Lower Morden Lane has become famous in Merton and Sutton for its amazing Christmas lights. This year, two hundred pounds from the funds raised from passers-by has been given to our Branch, for which we are most grateful.
THANK YOU, DUNOTTAR!
Our Chairman, Paul Everington, gave a talk to this girls' school near Redhill and, from this, enthusiastic fundraising is continuing apace. On a cold January day a team of girls pedalled an exercise bike and collected contributions from passing shoppers. A Valentine's dance added to the coffers for Branch funds.
FERRARI RIDE
Page 21 of the latest DSA JOURNAL reports on the Parliamentary Classic Car Run. Liz and Lance England have secured a place for the next such event on Saturday 5 July. Members and friends are invited to sponsor the journey of a 1974 Ferrari 308GT4. All sponsors will be in the draw for a place in this car on the day (starting from Woodham). Apply to Mrs. England (see Committee list) for your sponsor forms soon!
Following the publication of the White Paper, Valuing People, in 2001, The Learning Disability Task Force has been set up to make sure appropriate action follows Valuing People. People with learning disabilities and family carers are members of the Task Force which champions change and improvement at a local level. Copies are available by phoning 0808 808 1111 or from the websites:
www.doh.gov.uk/learningdisabilities/taskforce.htm
or
www.valuingpeople.org.uk/info_all_about_the_forum.htm
HEALTH ACTION PLANS
Following the White Paper, Valuing People, Health Action Plans are now available for people with learning disabilities. There are attractive, easy to read versions and Guidance for medical professionals and carers. Partnership Boards have to work with Primary Care Trusts to make sure people with learning difficulties have proper access to NHS services. Free copies of all the books from: Department of Health Publications, PO Box 777, London SE1 6XH. Tapes are available. Copies of the books are on www.doh.gov.uk/learningdisabilities By summer 2005 all people with learning disabilities should have had the chance to have a Health Action Plan.
WEIGHT WORRY
Remember the request in edition 42 for ideas for parents whose son, then 31, weighed 13 stone, followed by suggestions in edition 43? A holiday postcard from the parents last autumn reported their son has dropped from 13 stone to 12¸: "We have a chart, weight against time, and the line has dropped bit by bit. He weighs himself at the baths each Thursday and proudly shows the printout. He is rewarded with a 'Caliber' each time he drops a clear pound. Reduced food and more exercise help and he is now himself keen to reduce!" Well done! As this is a recurring problem with adults with Down's, additional ideas will be welcome - to your Editor - please.
OLDER FAMILY CARERS
The November 2002 edition of the Foundation for People with Learning Disabilities' family futures is a newsletter specifically for older family carers and those involved with them. An 'older' carer is usually aged over 70. For a copy, or to find out more about the Older Family Carers Initiative, contact Dalia Magrill on 020 7802 0300 or email: dmagrill@fpld.org.uk Other members of the Initiative partnership include British Institute of Learning Disabilities, Carers UK, the Department of Health, Home Farm Trust, Housing Options and Valuing People.
LD HELPLINE
The Learning Disability Helpline 0808 808 1111 is open 24 hours a day for advice on all aspects of learning disability, national and local services, your rights, others who can help. If an adviser is not available, leave a message and they will ring back. All enquiries are apparently private and confidential.
DISABILITY ALLIANCE CAMPAIGN
Research into the financial costs of caring for two or more children with disabilities or special needs is seeking families who will complete a questionnaire. Tel. Gabrielle on 020 7247 8776 or www.disabilityalliance.org/cost.htm and mention Contact a family newsletter.
DISABILITY RIGHTS
There is to be a new campaign, Educating for Equality, led by the Disability Rights Commission. To find out more, tel. 01612 182261. There is a confidential helpline to report discrimination in schools or colleges: 08457 622633.
COUNT US IN
One aspect of this work is a study: Meeting the Mental Health Needs of Young People with Learning Disabilities which has found that young people with learning disabilities aged 13 - 25 are much more likely to develop mental health problems than other young people. To promote emotional well-being, there is a need to boost confidence and emotional resilience, strong role models and relationships, practical and emotional support for families, a decent income and good housing. Particularly important is support through periods of change and transition in order to help them to maintain a positive sense of well-being and self-esteem. For a copy of this report (£ 27.50) tel. 020 7802 0304.
PMLD
The PMLD network, created in November 2000, works to help support people with profound and multiple learning disabilities. More information from Beverley Dawkins, Mencap, 123 Golden Lane, London EC1Y or email: beverley.dawkins@mencap.org.uk
LONELINESS
Some of our parents find, especially as their children reach their teens, a shortage of company of a suitable mental age. It could help if we can try to teach our youngsters how to open a conversation and listen to others. Perhaps we can encourage the beginnings of thinking how others might be feeling. This is verging on grown up abstract thought but many of our children amaze us how they can develop with gentle guidance. Creation of Circles of Friendship, or Circles of Support, could be the way forward and can start at any age. Details have been published from time to time, particularly in No. 28 the January 1997 Branch Newsletter (see the Branch website or ask the Editor for a copy). Membership of organisations and, as far as possible, travelling without parents can all help.
DISS
Disability Information Service Surrey aims to provide high quality information on all aspects of living with disability. Tel. 01306 875156 email: info@diss.org.uk , website www.diss.org.uk
CATALOGUES/EASY2NAME
Committee members are looking into providing catalogues for members which would lead to an income for our Branch. Do contact a Committee member if you have helpful information or experience in this respect. To start us off, pick up EASY2NAME illustrated order forms on 10 May at Purley and order name labels ready for the start of the new school year in September. Hand copies to your friends, too. EASY2NAME will give to our Branch 20% of all orders received on these forms.
VITAMINS ?
DSA founder, Rex Brinkworth MBE, strongly recommended that babies and children with Down's syndrome should take vitamin supplements because of poor absorption by the intestines. Attempts to carry out research have not yet confirmed this need yet there are DSA members who feel sure their child needs at least Vitamins C and E. Roger Quemby has received vitamin and mineral supplements all his life, based on the recommendations of Rex Brinkworth. Some years ago it became extremely difficult to buy 100 mg Vitamin C tablets. He has been taking 60 mg tablets as your Editor felt larger quantities would simply wash through. A new supplier of 60 mg tablets is Principle Healthcare Ltd., PO Box 177, Ilkley, LS29 0WW www.principlehealthcare.com Have readers any thoughts to share?
BRUSH BETWEEN
Looking after the teeth and gums of our child with Down's syndrome is extra important because it is likely s/he will not have all their adult teeth. Milk teeth can last for years with care. There is now available a remarkable tiny brush - it resembles a bottle brush - which keeps food from accumulating between the teeth. A dentist provided one, with one handle and spare brushes, of German design but made in Sweden by TePe. Or Boots stock one by Oral-B. It is really simple to use and could make teeth cleaning fun.
BBC OPEN DOOR
The programme on Down's syndrome, made in this series in 1976, included text by our founder, Rex Brinkworth MBE, film of his daughter, Francoise, and of (then) South East Branch members including the Quemby family. Mrs. Quemby now has a copy.
MANDY LEAVES
Our thanks and best wishes to Mandy Joscelyne, our Volunteer and Development Co-ordinator, who we are sorry to learn has left the DSA on health grounds.
RICHMOND LEISURE
Richmond Borough want families to complete a questionnaire on your wishes about sports and leisure activities for children with special needs. Please take the time to complete their simple form and return it as soon as possible. Project for Children with Special Needs, Windham Road, Richmond.
BOOTLACE PROJECT
This theatre arts project in Kingston, for young people with any special need aged 11+, takes place on Thursday evenings 6.30-8.30 pm in term time. Contact Sandra on 020 8330 4634.
CARSHALTON DRAMA
Parent member, Kathy Maillet asks other parents to contact her on 020 8669 8942 for information about a possible new drama with music group for children with Down's syndrome aged about 5 - 11.
CINEMA CLUB
A young man, Joe, with Asperger's syndrome, is leading this club in Croydon for teenagers with special needs. Tel. 01689 849653.
LONDON ZOO
The annual special event for disabled children and their families will take place on Saturday 14 June 10 - 5.30. Advance booking is essential by Friday 6 June. Tel. Laura Geary on 020 7449 6551. There will be British Sign Language interpreters at all the events and talks. Special prices: £ 8.50 for adults, £ 5.20 for children aged 3-18, younger ones free. A carer, if essential, is free.
MOBILITY TEACHING
A scheme in Northamptonshire has been taken up by other areas. Imaginative training has been given to people with learning difficulties, many of whom had been overprotected or had had few opportunities to make decisions and were anxious about going out alone. One trainee said: 'we learnt about safe and dangerous'. For instance, maps were made and coloured green for safe and orange for dangerous.
MOVING ON
Parent member, Lucy Baxter, in Woodhatch near Reigate, has a spare room and wonders whether someone with Down's syndrome would like to leave their own home and move into it, as a step towards independence. Ring Lucy on 01737 219229 to discuss. Lucy's three children with Down's are all adopted and are now 21, 15 and 7. She offers much care and support as well as companionship and outings with her extended family.
SUTTON OFFERS
Sutton Borough is offering classes of the participants' choice. Contact your Editor with requests. The classes should attract at least five or six families with a child with Down's syndrome or other special needs. They can be occasional or regular and start after Easter.
In addition, Adult Learners' Week starts 10 May and offers advice on courses and careers, an introduction to LearnDirect and spelling and grammar workshops. Full details from Margaret White 020 8770 6901 or email margaretwhite@scola.ac.uk
EDUCATION SUPPORT
A host of experts has drawn up a practical pack of materials, guidance notes and worksheets for all education professionals working alongside children with Down's syndrome in mainstream schools. If your child is in a mainstream school, make sure the teaching staff are aware of this new and valuable resource which is available on the DSA website. Work has begun on a further pack for professionals working alongside children with Down's syndrome in special schools.
HEARING HELP
The Royal National Institute for the Deaf has created practical information materials to help teachers working with deaf children. Tel. 020 7296 8264 www.rnid.org.uk/education
LANGUAGE SKILLS
A report summarised in DSA Liverpool Branch's magazine, of an American study, tells us that people with Down's syndrome continue to develop speech and language skills throughout their teens. It is therefore worth continuing extending expressive language although comprehension could be slower to increase. This Branch is becoming Down Syndrome Liverpool, affiliated to the DSA.
SPEECH AND LANGUAGE
Members who found their way to Hazelwick School in November learnt invaluable guidance from Tessa Duffy on ways to encourage their youngster to communicate. The format of two talks worked well. While parents absorbed Tessa Duffy's advice and fired a variety of questions, the grandparents and friends played with all the children. After tea for all, the adults changed over for a talk to help grandparents, other relatives and school assistants to ensure their child with Down's syndrome gained in confidence and ability.
TOPOLOGIKA
This company has been designing and publishing educational software for UK schools since 1987 and has now released cut-price Home Editions of its best-selling educational software including packs recommended for children with Down's syndrome. Download their details from www.topologika.co.uk/files/dsa.txt or telephone Jules Godfrey, 01326 377771, email jules@topologika.com Titles particularly recommended are: Speaking for Myself and Scally's World of Verbs. Each costs separately £ 24.99 or 10% less for both, plus VAT. The 16 page A4 catalogue for 2002-2003 is both colourful and informative.
KUMON MATHS
This additional method of teaching maths and encouraging an interest in numeracy is strongly recommended. Although there is a cost, the children enjoy making progress at their own speed and develop skills which it is rare to achieve in normal school lessons. There could be classes near you.
NETWORK 81 BEFRIENDING
Watch out for Befriender training weekends arranged by Network 81. The courses are designed to teach more about the 1996 Education Act, SEN and Disability Act 2001 enabling those who attend to help others with Statementing etc. The deposit is apparently refunded on completion of a course making it free. Val Rosier 0870 770 3262 could advise.
PARENTING SKILLS
The New Learning Centre in London NW6 offers workshops and courses plus mini-workshops in Clapham South. They sound practical and attractive. For details tel. 020 7794 0321 or www.parenting-skills.com Full details in the Spring 2003 Newsletter of Contact a family.
SURE START
Contact a family have been working with government and have produced a guide, Supporting families who have children with special needs and disabilities, for families with a child up to age 4. Available from Department for Education and Skills (DfES), tel. 0845 6022 260.
CONTACT A FAMILY
The Newsletters produced by this organisation, for the London Boroughs of Merton, Sutton, Croydon, Richmond and Kingston areas, are mines of information for parents, especially if your child with special needs is under about 14 although up to 25 could benefit, too. Do make contact, if you do not receive it, and consider joining their mailing list. Tel. 020 8543 9068, email: swlondon@cafamily.org.uk
JUST KIDS
If you are not familiar with this delightful book, produced by DSA North East Thames Branch, do contact our secretary, Liz England for a copy. It has been a true tonic to many new parents. There is now a website: www.downsyndromejustkids.pwp.blueyonder.co.uk with plans for another website being set up, based in France, featuring children from a number of countries: see www.justkids.fr.st
COFFEE INVITATION
Our Branch Secretary invites members to coffee from 10.15 am at her home on Thursday morning 1 May followed by a series so that you can put the dates in your diary:- Wednesday 11 June, Monday 14 July, Tuesday 9 September, and Friday 17 October. New members, whatever the age of your child, may like this opportunity to meet other parents informally if you have not yet attended an information day. Mrs. England (Liz) hopes existing members will also be able to come. Westwood Avenue turns south off Woodham Lane (B385) or is less than a mile walk (across the canal) from West Byfleet station. Contact Liz England.
WORTHING AND BRIGHTON
Welcome to the new affiliate entitled Worthing and Brighton Local Downs Syndrome Group and congratulations on their first Newsletter. Meetings are arranged for 8 pm on Tuesdays 3 June, 2 September and 2 December in Worthing. Details from Secretary Hazel White 01903 203317. Speech therapy continues on Fridays.
UPS and DOWNS SOCIAL
The Ups and Downs Down's Syndrome Learning Development & Support Group is based in the Crawley area and will be holding a Social and Fundraising evening on Saturday 17 May from 8 pm. All with an interest in Down's syndrome will be most welcome. There will be live entertainment and buffet and it is hoped Dame Judi Dench will attend. Venue: The Foremans Club, Eastbourne Rd, Blindley Heath, Surrey. Tickets cost £ 6.50 from Julie Mayne on 01293 785254 or Cathy Bailey on 01293 881232. VOLUNTEERING SCHEME
A new UK initiative, IT4Communities, encourages companies and individuals with IT skills to volunteer to benefit local charities. Charities needing IT skills can register online, too. Details: www.it4communities.org.uk
MOLE CONFERENCES
This organisation arranges conferences on topics relevant for professionals and families with a member with a learning disability and mental health problems. There will be one in London on 20 May concerning children and young people. Others take place from March to July. Details on 01273 242634 or website www.mole-conferences.com
DSA SUBSCRIPTIONS
Remember to renew your DSA subscription each year to support 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. It is not intended to charge members of the national Association an additional local subscription.
2003
Saturday 10 May - Branch AGM & Open Day, Launch of downsyndromeOK
Sunday 6 July - dsOK Trustees' meeting
Saturday 11 October - DSA national AGM
Saturday 22 - Open Day with DownsEd team
Saturday 8 May 2004 - downsyndromeOK Open Day & AGM.
BRANCH COMMITTEE (current contacts & email addresses)