All DSA members within this boundary will automatically become members of our new charity, for no additional subscription, as well as continuing as members of the DSA. Use of the DSA logo will continue under licence.
| South West Thames Branch of | Down's Syndrome Association |
At our Open Day at Christ Church school, Purley, in April, the decision was taken unanimously that the DSA South West Thames Branch will become an independent charity affiliated to the Down's Syndrome Association. Work is taking place on the new constitution but your Committee is keen to hear your ideas for our name. We will no longer be a Branch. There are no plans to alter our boundary which, at present, includes west London, south west London, Surrey and West Sussex.
All DSA members within this boundary will automatically become members of our new charity, for no additional subscription, as well as continuing as members of the DSA. Use of the DSA logo will continue under licence.
May the summer be bringing you fun and contentment!
Going to College Video
Growing up with Down's Syndrome ... Going to College is the title of the video made by our Branch last year and readers are reminded that copies are still available at only £5 (thanks to the Lottery funding which contributed to its cost). Young people with learning difficulties, their teachers and families will find this 14 minute video answers many of the questions they may have about life after school. Please encourage your local secondary schools, special schools and colleges to order copies. Cheques made out to DSA South West Thames Branch should be sent to the DSA national office (address below).
Open Day Speakers, April 2002
Reports on talks given at our Branch meeting at Purley are on our website (see reports page) A summary of part of the employment session is further down on this page.
Open Day Plans - November 2002
The development of communication for our children with Down's syndrome is often slow and a challenge to all who are endeavouring to improve it. Members were so impressed with the valuable advice which flowed from Tessa Duffy, speech and language therapist whose son has Down's syndrome, that she is being invited to lead a whole afternoon for us on 9 November. Brothers and sisters will be welcome and please invite everyone who spends time with your child, especially your extended family.
Please NOTE: after the printed newsletter was mailed to our members we are planning to hold this event at another convenient location, NOT Maidenbower Community Centre. We apologise for this change but hope that it will be more convenient for all concerned.
Full directions will accompany our Autumn Newsletter, as well as shown on our homepage soon.
Open Day Plans - May 2003
Better the school you know - your Committee has accepted the invitation of Christ Church school, Purley - again - to hold our annual meeting there on Saturday 10 May. Speakers are being sought on topics which we believe will be helpful to parents whatever the age of your child, including feet, toilet training, puberty and social development, and sleep problems. A young lady with Down's syndrome has already offered to tell us about her work experience, continuing the practice in recent years which enables parents to meet and learn from people with Down's syndrome. Please note the date for next year's diary.
Branch Website www.downsyndrome.org.uk
Our webmaster, Ajit Mané, wants to hear from members, both with comments on and contributions for our site. Many of you have titbits of information which would help other parents - don't keep them to yourself! If the piece of information you need eludes you, send in your request and hey presto the answer may well appear on your screen! There is a mine of information both locally and nationally - just test it and see! www.downsyndrome.org.uk
Committee members' names and telephone numbers are at end of this Newsletter.
Preparation for Employment
During the Branch Open Day, Lin Woodcock from Sutton Mencap Pathway Employment Service explained that preparation for work is the same for everybody and it is never too soon to begin training. She described this preparation under four headings: Personal Presentation, Timing, Using Money, Travel.
Personal Presentation includes not only personal hygiene and appropriate and clean clothing but facial expressions and body language. Timing is essential but tricky to learn. Encourage the estimation of time. For those who cannot tell the time, other signs will be needed. The use of money is possible even if the concept of numeracy and adding up are difficult. Security of purse and wallet need careful discussion as money will have to be carried for purchases made during the day. Travel training should start with finding safe places to cross roads. Training to use buses and trains begins by accompanying the trainee several times, first sitting with them, then elsewhere on the vehicle, then possibly following by bike or car to check how they are progressing. Discuss what to do if the bus breaks down, a train is cancelled or if the trainee gets off at the wrong stop. Full report and employment options are on the Branch website.
Connexions
This service provides advisers for young people aged 13 - 19 and has its own website: www.connexions.gov.uk
Transition Guides
The Family Fund Trust has published a booklet entitled Your Life Your Future, a basic guide to the transition planning process. Free to young people and carers, £2 for professionals. Tel. 01904 621115. Scope have published an information pack entitled Action 19+ A guide to getting what you need from your local authority at 19 plus. This guide is £5 to disabled people, parents, advocates and carers, £10 for others. Write to the Campaigns Department, Scope, 6 Market Road, London N7 9PW.
Clothes to Fit
A note in Down's Syndrome Scotland News reports that the Hansel & Gretel Clothes Company in Fife (established 11 years) offers simple alterations to their clothes so that any size or shape of person can buy smart new clothes that actually fit. For a catalogue tel. 01333 360219 or visit www.hansel-and-gretel.co.uk
Muslim Parents
The Spring edition of Contact a Family local Newsletter includes a request from a parent of a disabled teenager or young adult to meet other parents who are Muslim with a view to setting up a suitable day centre in the Croydon area. Contact Helen at CaF, tel. 020 8543 9068.
Subtitles
The National Subtitling Library for Deaf People (NSLDP) has launched Videoword Website to assist deaf people across the UK to watch films using ordinary VHS equipment. Tel. 0161 44 9650 www.videoword.org
Sutton Borough have extended their services by opening a Resource Centre. Activities are planned for visually impaired adults and children. Contact Barbara Duncan tel. 020 8409 7166. Surrey already have SAVI at Fetcham, tel 01372 377701
Alzheimers Disease
It has been found that some adults with Down's syndrome develop this disease at an earlier age than is usual in the general population. A note in a local paper suggests people who drink coffee from the age of 25 may not get Alzheimers. One wonders if this test has been applied to people with Down's syndrome. The note states three cups per day are required, not just the odd cup.
Hearing impaired
The National Deaf Children's Society has recently published New Guidelines on working with very young deaf children and their families stressing the value of early identification and intervention. This could be helpful even if your child's hearing loss is temporary. Tel. NDCS helpline 020 7250 0123, email helpline@ndcs.org.uk
Pronunciation
A parent in Down's Syndrome Scotland's News describes the use of electropalatography (EPG) which enabled her daughter to learn to make the sounds k and g correctly. Years of traditional speech therapy had not achieved this. The method involved fitting a special brace which enabled the movements in the child's mouth to be visible on a screen. The child quickly saw what was required and mastered the two sounds within weeks. Her mother is thrilled her ability has continued for three years without reinforcement and is grateful to those involved with this project at Queen Margaret University College.
Spine Weakness
Some children and adults with Down's syndrome have a weakness at the top of the spine known as Atlanto-Axial Instability or Insubluxation. This is rare and may not be checked reliably by X-ray. However, if your child complains when his or her hair is brushed or combed, or there is any other sign of pain or discomfort at the top of the spine, be sure to get expert advice. See 'Cervical Spine Instability' on the website www.intellectualdisability.info
Down's Heart AGM
The national charity, the Down's Heart Group, will be holding its AGM in Dunstable, Beds, 9.30 - 4 on Saturday 21st September 2002. Speakers will cover "from birth towards Independence" and include reference to prenatal diagnosis through teens to employment. Non-members will be welcome and should contact 01525 220379 or email downs_heart_group@msn.com for more information or for registration form.
foundation stones
This Newsletter of the Foundation for People with Learning Disabilities could be of interest to parents and carers of adults with learning difficulties. The May edition includes reports on conferences and studies on such topics as 'the spiritual needs of people with learning disabilities', 'cancer and people with learning disabilities', 'meeting mental health needs', and a policy forum. The Foundation has moved to 83 Victoria Street, London SW1H 0HW tel. 020 7802 0300, email fpld@mhf.org.uk www.learningdisabilities.org.uk (This website is not to be confused with the new Health Alert website www.intellectualdisability.info)
Qualifications
The Mental Health Foundation believes there are 83,000 people working in learning disability services in England but few have relevant qualifications. A new Awards framework is now available which includes mandatory and optional units. All City & Guilds Affinity and National Open College Network centres across the UK will be eligible to provide the certificates. Details are available from the Foundation for People with Learning Disabilities, tel. 020 7802 0300.
DisabledGo Croydon
This directory, which will assist anyone with any disability visiting Croydon, has a website: www.disabledgo.com and will soon be published in book form. It is strongly recommended in the Contact a Family Spring Newsletter.
London Underground Access
Transport for London with Scope and London Underground have published an access guide which is available from stations and from TfL Mobility Unit tel. 020 7941 4600 www.thetube.com
Lone Parents
There are an estimated 1.7 million lone parent families in the UK. Organisations which offer help and support on all aspects of this situation are listed in the Spring edition of the local Contact a Family Newsletter. Tel. Helen or Jo for a copy 020 8543 9068.
Sutton Parent Group
Sincere thanks are due to Pete and Val Morgan for leading the Sutton (Surrey) DSA Parent Group for several years enabling members to help and support each other. The group has now closed as Pete and Val are expecting an addition to their family. All good wishes to them.
Positive Richmond
A new support group for parents of children with Down's syndrome has been formed in the London Borough of Richmond. It meets about once a month in members' homes for tea or coffee and is called Positively Down. Its purpose is to provide an opportunity for parents and children to get to know each other, share experiences and offer friendly support. Families outside Richmond Borough will be welcome, too. Contact Sue tel. 020 8898 4506 email:sue@ifnotnow.co.uk or Joanne 020 8286 1484 email:brian.hood@ukgateway.net for meeting places and times.
Play Fun
Ideas from the Newsletter of Liverpool DSA Branch of simple educational 'toys': tuck a bright picture into the side of the cot - less boring than blank sides; lay the baby on metallic wrapping paper which encourages movement by making interesting sounds; a toddler will love to be placed in a box of shredded paper - it rustles and can be thrown around. The author, Pat Baxter, particularly recommends 'The Touchy Feely Box' filled with items such as various brushes, a soft duster, pan scrubber, bath sponge, pine cone, different spoons etc. We are reminded about hygiene and watching our children during such play. Their website is:
www.dsa-liverpoolbranch.org.uk
Contact a Family
The South West London CaF runs activities for families. For details tel. Helen or Jo on 020 8543 9068 or email swlondon@cafamily.org.uk
Internet Pen Friend
A young lady with Down's syndrome would like to correspond with an English person with Down's syndrome via the internet. The lady is 20, lives in Barcelona and is making excellent progress with her English lessons. She also works part time in a hospital. Her teacher is a good friend of a DSA member in Derbyshire. Please contact her through our Branch address info@downsyndrome.org.uk
Computer Help
The Summer Newsletter of Contact a Family South West London lists organisations which can advise on software: SEMERC, Granada Learning Ltd., tel. 0161 827 2927 www.granada-learning.com; ACE CENTRE (aids to communication in education), tel. 01865 763508 www.ace-centre.org.uk; BECTA (British Educational Communications and Technology Agency), tel. 024 7641 6994 www.becta.org.uk; AbilityNet (in our last Newsletter), tel. 0800 269545 www.abilitynet.org.uk; MERU (Medical Engineering Resource Unit) (in our March 2000 Branch Newsletter), 020 8770 8286 www.box42.com
Grid Club
The Newsletter of Liverpool DSA Branch reports an education website launched last year by the Department for Education and Skills in conjunction with Channel 4 Learning. The site is for children aged 7 - 11 and has clubs for different interests. www.gridclub.com
DownsEd
The Down Syndrome Educational Trust has revised its brochures and catalogues which can be requested on tel. 023 9285 5330 (fax 023 9285 5320) or email:brochures@downsed.org Website: www.downsed.org
Ed. Psych. Website
This website is available to anyone seeking an educational psychologist for advice or assessment:
www.educational-psychologist.co.uk
Communication Matters
This charity produces leaflets which describe in constructive detail how anyone with limited speech may be helped to communicate. For instance, we need to start by finding out how that person 'says' YES and NO. One leaflet introduces Augmentative and Alternative Communication; another suggests the First Steps in developing communication skills for individuals with multiple disabilities. There are six leaflets in this "Focus on ..." series, obtainable from: Communication Matters, c/o The ACE Centre, 92 Windmill Road, Headington, Oxford OX3 7DR, tel. and fax 0870 606 5463, www.communicationmatters.org.uk
Talking Mats
This method of communicating with someone with learning difficulties was devised in 1998 by Joan Murphy and Lois Cameron at the University of Stirling. Down's Syndrome Scotland News recommends it for health and social work professionals, teachers, advocates, carers and family members. For information or to order the package, contact AAC Research Unit tel. 01786 467645 www.aacscotland.com
Statements
The Newsletter of Liverpool DSA Branch reminds parents to ensure speech therapy is in Part 3 of their child's statement, not in parts 5 or 6 only. The Code of Practice makes it clear that, as communication is so fundamental in learning and progression, addressing speech and language impairment should normally be recorded as educational provision (paras 8.49 and 8.51 refer). Para 8.37 also states: 'Provision should normally be quantified .. '. Thank you, Colin Hill in Liverpool.
Makaton Roadcraft
The Makaton Vocabulary Development Project, working with a Road Safety Officer with considerable experience with people with learning difficulties, has created an attractive book to assist with teaching safe road behaviour. The ability to cross a road is essential for independence but presents an additional challenge if the pupil has limited communication skills. The book guides the teacher on the signs recommended to endorse the illustrations, all of which are clear and based on what the pupil will already have learnt. This book is recommended for teachers (especially parents) of pupils of all ages. This spiral bound book costs £25 tel. 01276 675564, www.makaton.org
Holiday Trust
The Calvert Trust has purpose built holiday centres for people of all abilities. Individuals, groups or families may apply to stay at the centre at Kielder Water, Hexham, Northumberland. There is a wide variety of activities on offer. Tel. 01434 250 232. There are also Calvert Trust centres in the Lake District and north Devon. www.intellectualdisability.info or parent and one-time DSA trustee Mrs. Chris Gravell's site: www.43green.freeserve.co.uk/uk_downs_syndrome/ukdsinfo.html#Top ; Contact a Family suggest the Joseph Rowntree Foundation: http://www.jrf.org.uk and the Henry Spink Foundation: www.henryspink.org
Christian Support
A Christian Support Group has been formed for parents who have a child with a disability or special needs. Contact Juliet Blows (020 8944 0774) or Ruth Goodman (020 8946 5303) for details.
Scottish Conference
At the national conference of Down's Syndrome Scotland, on 5 October in Dunfermline, workshops are being held involving siblings and carers. DSS News lists concerns which could affect brothers and sisters of a child with Down's syndrome including: guilty feelings about being angry with their brother or sister who has Down's syndrome, helping siblings to know how to handle unpleasant remarks from their peers, possibly finding a local group at which siblings may meet others of their own age who have a brother or sister with special needs, parents discussing with siblings possible future plans for their sister or brother - there could be anxiety about who will look after this brother or sister when parents can no longer do so.
Peds on the Phone
There is concern at the number of child pedestrians being involved in road accidents because they are using a telephone - possibly texting rather than looking where they are going.
Sponsored ride
Please find sponsors for our Hon. Treasurer, Stewart Bailey, who will be raising funds for the Branch on his cycle ride from 16 to 30 November in Costa Rica.
Sunday 29 September Branch Committee meeting
Saturday 12 October DSA National AGM, York
Wednesday 16 October Branch Committee meeting
Saturday 9 November Communication afternoon (Open Day Nov 2002)
2003
Sunday 26 January Branch Committee meeting
Saturday 10 May Branch AGM and Open Day
Diary Dates
BRANCH COMMITTEE (current contacts &
email addresses)
| Officer's name & contact | Offspring born in |
|---|---|
| CHAIRMAN - Mr. Paul Everington 01293 889777 | daughter 1997 |
| VICE CHAIRMAN - Mrs. Karen Edmonds 020 8330 1597 | son 1994 |
| SECRETARY - Mrs. Liz England 01932 344482 | son 1994 |
| TREASURER - Mr. Stewart Bailey 01293 881232 | daughter 1999 |
| NEWSLETTER EDITOR / MINUTES SECRETARY
Mrs. Shirley Quemby 020 8642 3720 (fax 020 8241 3947) |
son 1971 |
| BRANCH MINI-LIBRARY - Mrs. Maggie Almrott 01403 257083 | daughter 1984 |
| OTHER COMMITTEE MEMBERS | |
| Mr. Mark Anderson, 020 8661 9400
Mrs. Rashné Everington, 01293 889777 Mrs. Helen Long, 020 8337 7638 Mrs. Donna Self, 020 8393 8685 Mrs. Jo Tofts, 020 8337 6715 Mr. Ajit Mane website coordinator 020 8979 7485 |
son 1988
daughter 1997 daughter 2001 son 1997 son 1996 daughter 1981 |
| Volunteer & Development Co-ordinator for DSA in S.E. England
Mrs Mandy Joscelyne (answerphone/fax) 020 7476 9041 |
son 1984 |