Today on the News several adults with Down's syndrome I am sure inspired many of us as they were interviewed at the Special Olympics at Portsmouth. We wish all competitors a happy week sharing experiences and friendship as well as the increased self-esteem that comes with achievement.
A bumper issue this time to make up for the last rather smaller Branch Newsletter. Contributions are welcome from all readers.
CONGRATULATIONS, KAY!
During Down's Syndrome Awareness Week your Editor received an invitation to a Tea Party in Cheam and was delighted to meet Kay and her family and many of their friends. The delicious array of home-made goodies, and donations, raised more than £70 on the day.
BRANCH INFORMATION DAYS
For some years, half-yearly parent information days have been held by the Branch Committee. No November half-yearly parent information day is planned by the Branch Committee this year. The annual general meeting will be held in April or May 1998 when it is hoped a large number of parents, professionals and friends will be present. Committee members are always pleased to receive requests for topics for talks or workshops - do ring if you have an idea or problem! A Branch meeting can often attract a speaker with wider expertise than may be possible for a local parent group meeting or an individual.
Many
of our children with Down's syndrome will also be able to achieve this
skill, possibly using nail clippers and scissors. Start by congratulating
the child when s/he remembers to ask for the nails to be cut. There is
a note in the DSA publication Information for Teachers, Welfare Assistants
and Youth Leaders: "Scissors will be better controlled if held with
the forefinger along the shaft and the second and third fingers in the
finger hole". It is advisable to encourage this method of using scissors
from the beginning, even when learning to cut paper, as both control and
power are thereby increased and of course frustration reduced. Using only
the forefinger and thumb, the scissors easily twist from the vertical cutting
position.
This nationwide charity provides an invaluable service to parents whose child was born with a heart condition. It is good to learn that they have been awarded lottery money to make a video to explain heart conditions which affect children with Down's syndrome. They are now appealing for donations to complete the sum required. Down's Heart Group National Office: 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA. Tel. 01525 2203779 (fax 01525 2211553). London and South contact: Katie Spall, Ormonde, Henley Down, Battle, East Sussex, TN33 9BT, Tel. 01424 830594.
The National Lotteries Charities Board fifth round grants programme aims to fund projects including those which improve people's living environment through meeting housing need. Application packs available until 5th September 1997. Tel. 0345 919191.
GRANTS - AGE CONCERN
One off grants of up to £2,000 for projects meeting older people's needs are available under their Operation Enterprise. Contact the Grants Unit, 0181-679 8000.
GRANTS - HOLIDAYS
Holiday grants of up to £300 are available from the Family Holiday Association to enable families on low incomes with at least one child aged 3 - 18 to go on holiday. Details from Sacha Jewell 0171-436 3304.
RARE BREEDS CENTRE
When considering somewhere for a family outing remember the 90
acre South of England Rare Breeds Centre at Woodchurch, between Ashord
and Tenterden in Kent. It is not only an excellent place for families,
with 500 animals, a large modern cafeteria restaurant, plenty of space
to walk and play, but also it is run by the Canterbury Oast Trust and is
largely staffed by people with learning difficulties. Adults £3,
Senior Citizens £2.50, children 75p, special rates for parties. Free
access to the restaurant and free parking. Tel. for details 01233 861493.
The nearest station is Ham Street leaving more than a mile to walk. The
Canterbury Oast Trust is a registered charity, formed in 1983, which has
a number of group homes and employment centres in that part of south east
England.
HELP! HOW CAN I ... ?
Start explaining Down's syndrome to my child?
Discussion amongst adults with Down's syndrome has shown clearly that they have greater confidence in themselves when they know they have Down's syndrome. When do we start to explain to our child? It will probably depend on whether there are other children who need the explanation - siblings or playmates etc. We don't know how much our child hears and absorbs from general conversation about his/her special needs so it is probably advisable to begin young, with pride in our child as s/he is. It will be years before the condition is fully understood but simple explanations as and when particular aspects of the condition crop up is surely the best way forward. From experience, waiting for a child to ask will probably be a fruitless wait.
The explanation needs to dwell on the positive, not on differences and problems, as indeed it would if one had to explain that you had adopted the child. Dramatising the specialness of the child and emphasising how much s/he is loved, endorsing every achievement in spite of short fingers, oversize tongue etc. could all help to build confidence and understanding. Perhaps two families, each with a child with Down's syndrome, could help their own and the other child to begin to understand. Most children seem to learn quite early that they grew in Mummy's tummy. The fact that something went a little bit wrong when s/he was very very tiny could start the learning process. It is not something s/he will 'get better' from but many of its effects can be partially overcome. Be clear that it is no-one's fault and not 'catching'. Do ring or write in if you have alternative suggestions. Perhaps it it time this difficult but very important topic was covered again at a parent information day? Our Brother Has Down Syndrome on the DSA literature list is helpful.
Parents and carers - ring or write your requests for this occasional series of "HELP! How Can I... ?". Readers' ideas will be most welcome.
BICYCLE NEEDS GOOD HOME
Carolyn Nowell is offering the bicycle which gave her son much pleasure in his teens. As our young people generally have quite short legs she feels it could be of use to another boy with Down's syndrome. The bicycle is a Puch with 19 inch green frame, 24 inch wheels, orange mudguards and attractive white wall tyres, cable brakes, single gear, bell. This bicycle will probably be easier to propel than a modern mountain bike - see September 1996 Branch Newsletter. Contact Mrs. Nowell, 5 Dunmore Road, Wimbledon, London SW20 8TN. tel. 0181-946 5944.
COMPUTER ASSISTANCE
A paragraph in the SDSA NEWS describes simplified keyboard and mouse (large coloured keys, large roller ball) available from KCS Tools for the Computer Enabled, PO Box 700, Southampton, SO17 1LQ, tel. 01703 584314. KCS supply equipment which helps people with moderate and severe learning disabilities to enjoy using the computer.
MUSIC APPRECIATION
An article entitled "Learning to Listen to Music" in VIEWPOINT, the Spring 1997 Newsletter of the DSA Devon & Cornwall Branch, recommends a computer program called Beetles for the development of music appreciation for children. The writer states "Beetles is suitable for all the musical goals at Key Stage 1 and 2 and has a wide variety of options for working towards Key Stage 1 with very young children and kids with special needs. As a tool for teaching the rudiments of musical structure, improving listening skills and musical appreciation or just as an opportunity to explore a wide range of musical sounds and instruments in a constructive and entertaining way, this is a great piece of simple and easy to use software." It is apparently easy to load and use and comes with a good instruction book. Beetles is produced by Brilliant Software and available from Semerc (0161-627 4469).
DISABILITY INFORMATION SERVICE SURREY
Just a reminder that this organisation has a mine of information
at its fingertips. There are centres all over Surrey or the main contact
is 01306 875156. (Minicom 01306 742128).
SUTTON DSA PARENT SUPPORT GROUP for children under 8
This enthusiastic and friendly Group continues to meet bi-monthly but the evening is changing to Wednesday. Note the following dates in your diary then check with Suzanne shortly beforehand (0181-642 1045) that it will take place at 8 pm at her house in Mulgrave Road, Sutton, as before:
10th September, 12th November, 1997;
7th January, 4th March, 29th April and 24th June, 1998.
SUTTON'S AFASIC GROUP
A report in the SUTTON BOROUGH GUARDIAN states that this group meets on the first Wednesday of each month 8 - 10 pm and on the third Wednesday during term time 10 - noon. It is keen to welcome new members especially parents of children at mainstream schools and children who have not yet started school. It offers information about all the various benefits and services available locally for speech and language impaired children and has a library of information about language development and disorders. Ring Alison on 0181-669 0087 for details.
REDHILL PARENT SUPPORT GROUP
This 'coffee and chat' group can be found on alternate Wednesday mornings, 10 - 11.30, at the Methodist Church, Gloucester Road, Redhill. Contact DSA member Natalie Thorpe 01737 215654.
PARENTS FOR INCLUSION
This registered charity is affiliated to The Alliance for Inclusive Education and is funded by the London Boroughs Grants Committee. It's aim is "Getting a Life" for children with any disabilities, primarily by being fully accepted and properly supported in mainstream schools. For more information write to Parents for Inclusion, Unit 2, 70 South Lambeth Road, London SW8 1RL, tel. 0171-735 7735 (fax 0171-735 3828).
Sunday 14th September Branch Committee Meeting
Saturday 11th October DSA National AGM - Birmingham
23-26th October Sixth World Conference on Down's Syndrome - Madrid
Saturday 15th November TDSRFL Conference for Parents (see front page)
Monday 17th November TDSRFL Conference for Medical Professionals
DR. JOHN LANGDON DOWN
The Greater Manchester Down's Syndrome Association UPDATE
Spring 1997 edition carries a full-page article on Cornish-born Dr. John
Langdon Down (1828 - 1896) showing him to be a brilliant pharmacist and
doctor with a sincere interest in people with learning disabilities. It
was in 1866 that he wrote the description of the people whose condition
now bears his name. However, they were referred to as 'mongols' until 1961
when a group of scientists including a grandson decided that the description
should be changed to Down's Syndrome because the term "mongol" was offensive
to the Mongolian race. The World Health Organisation agreed to this in
1965. A descendant of Dr. Langdon Down was born with Down's syndrome after
his death.
This practical handbook for parents has been recommended by one of our newest parent members. It is published by the Heart Line Association, Rossmore House, 26 Park Street, Camberley, Surrey, GU15 3PL Tel. 01276 675655 @ £4.50. ISBN 0-9515270-1-0.
The Branch has received a letter from Stephanie Lorenz who is seeking children with Down's syndrome who attend a mainstream school with support. She plans to carry out a nationwide survey because she is concerned that these children may not actually be getting quality education. All individual details will be kept confidential and no schools will be named although Stephanie is hoping to discover from parents the differences in practice between different local education authorities. If you would like a copy of the questionnaire please ring 0161-794 1441 or write to Stephanie Lorenz, 26 Worsley Road, Worsley, Manchester M28 2GQ, stating whether your child is at primary or secondary school. Stephanie would be pleased if those who are changing schools would consider completing two questionnaires, one giving details about the current year and one when the child has settled into their new class in the autumn.
AUTISTIC TENDENCIES
An article in the magazine of the Down's Heart Group reports on studies
taking place which could be of great encouragement to parents who wonder
whether their child has autistic tendencies. DSA Adviser Dr. Jennifer Dennis
is supporting the research and wants histories of any child whose carer
feels s/he may have autistic tendencies.
RESEARCH ABOUT ADULTS
How do adults with Down's syndrome feel about themselves? Mick Finlay of the University of Surrey Department of Psychology would like to interview parents and carers to get their views, and also to find how they explain events associated with their sons'/daughters' difficulties to them. He feels the findings of the study will help to make professionals and others more aware of some of the issues parents face in explaining things to their children and the ways they have found to deal with these difficult issues. Mr. Finlay would like to talk to parents or carers who support people who can communicate verbally and who are 16 or over. The interview would be held wherever would be most convenient, would last about 45 minutes and would be confidential. This is the second part of a study the first part of which involved interviewing clients in a day centre and at Gateway clubs. If you would like to help, ring Mick on 0171-582 9628 or write to him at the Psychology Department, University of Surrey, Guildford, Surrey GU2 5XH.
HEART RESEARCH
A progress report by Dr. Anna M. Kessling in the Down's Heart
Group Newsletter No. 16 refers to blood samples taken a few years ago and
subsequently studied to find out why some babies with Down's syndrome are
born with a heart defect and others are not. The published result indicates
that there are differences in the genes, particularly one involved in heart
development. The work continues at the Kennedy Galton Centre.
ENCOURAGING SPEECH
Marian Lelliott's contribution to the Branch's open meeting on
Saturday 26th April was helpful to many present. She emphasised the importance
of the development of memory to improve communication and described some
fun activities we could use to assist our children to improve not only
communication but also articulation, categorising and confidence. We were
reminded that we cannot teach anything to someone who doesn't want to know
- so we have to motivate our youngster to want to play and learn.
Keep an eye on hearing and vision as she believes both can deteriorate
quite quickly. A 'sound bag' was suggested - place in an opaque bag objects
which will each make the child make a noise as it is drawn out e.g. a farm
animal, car, baby doll etc.
STICKER BOOKS
Sticker books '123' and 'ABC' from the Early Learning Centre
could be helpful.
SDSA INFORMATION LEAFLETS
The Scottish Down's Syndrome Association has produced two leaflets of interest to parents with children of school age. Your child has Down's syndrome - starting school suggests practical ways in which a parent can offer support to a school; Your child has Down's syndrome - looking at schools is written for parents seeking the best placement for their child. No charge is specified in SDSA NEWS but no doubt a stamped addressed envelope would be appreciated. SDSA 158/160 Balgreen Road, Edinburgh EH11 3AU, tel. 0131 313 4225. Bear in mind that the Scottish education system differs from ours in some respects.
TEACHING READING
In addition to the helpful publications, games and videos available from the Portsmouth Down's Syndrome Trust, the SDSA NEWS recommends a book entitled Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers by Patricia Oelwein 1995 published by the Woodbine Press.
PORTSMOUTH DOWN'S SYNDROME TRUST
The Sarah Duffen Centre, Belmont Street, Southsea, Hants, PO5 1NA, 01705 824261. The Trust is expanding and has recently won funding from the National Lotteries Charities' Board. Assessments of children with Down's syndrome are available and there are training days and occasional open days. Members of the Trust receive helpful information in the form of their magazine DOWNSEd.NEWS. The March edition carries a cheering and constructive report from a parent whose middle child, Tom, was born with not only Down's syndrome but also a severe heart condition and one hand missing. Now 4, his speech, reading and personal social development are clearly remarkable and it appears he will cope well with school.
The Scottish Down's Syndrome Association NEWS reports on a book entitled Life without Jargon: How to help people with learning difficulties understand what you are saying by Virginia Moffat, Choice Press, London ISBN 1-9000532-01-8. Apparently this book draws together considerable practical experience in making information accessible to people with learning difficulties and is full of practical examples of good practice.
ALISA
A cheering letter from Alisa in Bolton appears in the Down's Heart Group Newsletter No. 16 alongside her poem about friendship which was recently published in a local newspaper. Alisa was born with Down's syndrome and heart problems, is nearly 18, has passed seven GCSEs (having sat nine), and is about to begin driving lessons. She will be starting a secretarial course at her local Metropolitan College in September. She "would like to set up a helpline for young people with disabilities who need to talk to someone who has had experience of school, especially secondary, and changing to college, and all the other things that sometimes you can feel a bit alone about".
LIVING FULLY The search for a meaningful life by people with learning disabilities
St. George's Hospital Medical School, Tooting, will be running a conference on this topic on Monday 10th November 1997 at which both the welcome, and an afternoon session, will be led by people with learning disabilities. The cost of the Conference will be £85 up to 31st July then £99 which includes lunch. People with learning disabilities and their families each pay £15 for the first 100 places only. This also includes lunch. Questions in advance are invited. Phone for a programme and registration form on 0181-725 5534 preferably between 11 am and 4 pm Monday to Friday.
MOVING ON
The Supported Living Team in the London Borough of Sutton lead a Move On Project. Shortly starting its fifth year, it has provided training and social evenings for adults with learning difficulties who want to improve their independence skills. An activity shared one evening recently could be of interest to other parents: the adults were divided so that each faced another across the room. The adults from one side began walking towards the person opposite. This person was required to put up a hand to stop the advance when they felt the advancing adult was about to enter their 'space'. Many adults with a learning disability find it difficult to know how near to stand or sit when speaking to someone. This we need to teach if our young person is to be accepted and confident in any company. The Move On Project course starting in September is not full. Tel. 0181-770 4332 Sarah or Alison.
CONFERENCE
The next Children's Heart Federation Conference will take place
in Newcastle on 12th - 14th September 1997 and will focus on the theme
of diagnosis.