Readers and your families and friends are encouraged to make use of the enclosed leaflet ready for naming clothing and other possessions for the new school year. If you order on line please be sure to mention downsyndromeOK as we receive a commission which helps our fundraising.
All DSA members have now received an invitation to this important annual meeting being held, again, at National Office which is the building in which Dr. Langdon Down encouraged people with Down's syndrome to lead fulfilling lives. This is a great opportunity to meet other parents, DSA staff and volunteers. There are displays about Dr. Down's work and Singing Hands will be signing songs (hopefully for audience participation!). If you plan to bring children, be sure to make early booking in the creche. People with Down's syndrome will enjoy time together too.
During one of those scorching summer days in Awareness Week in June, four dsOK trustees and members of their families raised awareness of Down's syndrome at the Carshalton Carnival in Carshalton Park. Callers at our stand included a family with a youngster with Down's syndrome, who were delighted to meet members of the organisation which they had joined, and a teacher with a particular interest in children with special needs. Inspired by the Pacific Island theme, our visitors made grass skirts and jaunty hats thanks to the imaginative lead of Helen Pattison and helpers.
Families and friends congregated in a perfect setting in Tilgate Park near Crawley for our second picnic. Shaded by a huge oak tree, with an expansive grassy slope down to a blue lake on which canoeists were having fun, with a backdrop of woodland and a colourful children's plaground nearby, made sure everyone felt relaxed and ready to chat with the others who came. Nearly sixty altogether, including six trustees were present for this most pleasant gathering.
The Down's Syndrome Research Foundation has published the third edition of its booklet which is written to help new parents of a baby with Down's syndrome. Free copies are available on request. You are recommended to tell your GP surgery or paediatrician about the booklet.
This well established national charity specialises in advising parents whose baby with Down's syndrome has been diagnosed with a heart defect.
For parents not on the mailing list of this organisation, visit the Contact a family website for many useful ideas, publications and details.
This year's (third annual) conference will be themed around people with learning disabilities and is planned for Thursday 19th October, 9.30am - 4pm at the Phoenix Centre, Mollison Drive, Roundshaw. People with learning difficulties and disabilities will be taking part both as speakers and entertainers. Contact Graham Dean for further details
Many of you will remember reading about the excellent day set up by National Office in Birmingham earlier in the year. It is good to know another is being arranged for 11th November to help to keep affiliates and local groups around the country in closer contact with work and staff at The Langdon Down Centre. Three of our trustees were able to attend in February and it is hoped some will support the next Exchange Day.
The summer edition of Down's Syndrome Scotland news reports new publications which may all be downloaded from www.dsscotland.org.uk
Numeracy by Cecilie Mackinnon. This is accompanied by a CD Rom.
Pain Factsheet by Lynda Russell (to help carers to recognise signs of pain in people with learning disabilities).
Let's Talk about Down's Syndrome by Lynda Russell, an easy to read booklet aimed at young people with Down's syndrome to increase self-esteem.
Diet, Weight and Exercise by Lou Marsden, a workbook which explains why people with Down's syndrome can have difficulty maintaining a healthy weight, with a diary to complete.
People First is staffed by people with learning difficulties and a few supporters. A member of staff recently gave her colleagues at national office a presentation on autism, the cause of her learning difficulty.
Roger Quemby, the only staff member with Down's syndrome, was then asked to explain Down's syndrome and at home he worked on his talk to make sure his audience would understand and enjoy it. Both social and medical aspects were explained.
Afterwards, he brought home questions from his audience which showed they had found it interesting and that they have deep concerns about pre-natal testing and termination.
Fitness is fun, seriously! Speaking as a Personal Trainer and Sports Therapist, who has had the pleasure of teaching a young man with Down's syndrome over the past two years, I have seen improvement in his self-worth, exercise ability and determination to become fitter. Here are a few thoughts to help in planning a fitness lesson.
- Exercise must be progressive and gentle. Never mind where the pupil starts, the important thing to remember is where s/he can be in the future.
- Encourage constantly - we all need it. Exercise helps to release hormones called ENDORPHINES which increase the body's 'feel good' factor.
- Fun and variety, let's laugh regularly together! Fitness is not just physical but emotional as well and seeing a smile on a face during a fitness session and at the end of it is so important.
Please call me on 07951 889042 if I can help or advise you further or email via my web site.
Please be sure to inform both the DSA at Teddington and ourselves if you are moving so that you and your child continue to benefit from the information sent out to members. Remember, if you are moving to a new area, there could be an affiliate or local group of the DSA already established with information about local schools and services to share with you.
Free membership of downsyndromeOK is available to all DSA members who live in south east England (specifically west and south London, Surrey and West Sussex). For an application form, please contact our Membership Secretary, Mrs. Janine Brewster.
The dsOK Parent Contact List is another means of sharing information. If you would like to be included, or update the details held, please contact Mrs. Brewster.
The Down's Syndrome Association was founded in 1970 on the basis that teacher, Rex Brinkworth, demonstrated that early stimulation of a baby with Down's syndrome led to sometimes remarkable improvement. Many of the children and young people of the early DSA members have left home for other accommodation. It is important that care staff now taking responsibility for adults with Down's syndrome should be informed of the specialist ways in which those in their care can continue to reach their maximum potential and maintain good health.
Your editor and son, Roger, recently had a great opportunity to assist with training future care staff and social workers during an afternoon session at Reading College, part of Thames Valley University. Our contribution was well received and will be repeated during each nine week course. Readers with a suitable audience may make use of the talk notes.
downsyndrome OK still offers copies of its video
Growing Up with Down's Syndrome ... Going to College which is recommended for teachers, parents and young people with Down's syndrome (or other special needs) who are unsure about moving on to College. The video costs only £5, and is obtainable from National Office or direct from our Chairman. Please make cheques payable to downsyndrome OK.
DSA affiliate, Downsyndrome extra 21 report a website which gives information to help people with any disabilities aged 16 or over. It has been created by the Family Fund and offers a wide range of ideas and advice.
Events for people over 16 with learning difficulties are planned to take place at Croydon Clocktower during the autumn. We understand that, on 30 October, there will be a film festival to be run by and for people with learning difficulties. Enquire too about free film-making workshops.
There is a move to pilot a Theatre Buddy scheme and a reference to The Beautiful Octopus Nightclub on 6 December.
Founded by parent, Peter Elliott, to set up medical research to improve the outcome for children with Trisomy 21, this organisation is celebrating its tenth anniversary. The results of the Antioxidant trial, in which some of our members' babies took part, will be announced at the 9th World Down Syndrome Congress (August 22-26, 2006) in Vancouver, Canada. Results will then be published on the DSRF website and sent to dsrf members.
The latest email newsletter reports, for schools, an initiative entitled Everyone Counts which will promote inclusion among students with or without disabilities. The program kit includes lesson plans, activities, a poster, videos and teacher guidelines. Apply for a pack for your child's school - the first five free and thereafter £20. Useful to all who are interested in promoting inclusion and integration.
DSRF invites support in the form of help with publicising their work, becoming a member, fundraising or giving donations, Gift Aiding these and requesting their email newsletters. DSRF assure us personal information is not shared with a third party.
Two intensive days on Down's syndrome were described on page 1 of our February dsOK news (No. 9). Parent members from DSA affiliate, Downsyndrome extra 21, attended and have sent a 19 page report to the DSRF which they recommend to all DSA parents. Read it on their website.
There is a short and positive report in the Downsyndrome extra 21 newsletter dated Spring 2006.
The long established Larondina Dance Company, which is based in our area and whose members all have Down's syndrome, is looking to perform anywhere in the UK at little or no cost. Please email its founder, Angelina, via the address below.
peter@psander.demon.co.uk
The introduction by Gill and Mike Kennard, at our Parent Information day in May, provided much food for thought on the importance of communication and the problems to be overcome when it is limited. British Sign Language has served the deaf community for many years, the invention of Makaton extended its use to babies and children with special needs. Mr. & Mrs. Kennard have done some remarkable work to extend and expand BSL and Makaton to enable signing (with speech) to be of value in many more situations. They publish a wide range of resources for all ages and stages.
We were reminded that the movement of the hands helps attention span; that speech and language function in different parts of the brain; a sign can be held until understood, which is difficult with the spoken word; signing helps concepts and processing of language. If a child already finds speaking difficult, this can be stressful whereas signing can slow speech and make it more intelligible so relieving stress. Signing makes communication fun and can alleviate the 'terrible twos'. We were advised to speak clearly and sign at the child's pace, to use all non-verbal methods and let the child take the lead. Signing can advance reading skills, give greater independence and reduce disturbed or challenging behaviour. In homes for people with learning difficulties and poor speech, teaching signing has been found to improve not only behaviour but relationships and self-esteem.
Signalong, Stratford House, Waterside Court, Neptune Way, Rochester, Kent ME2 4NZ
Set up by two mothers of children with special needs, one a baby son with Down's syndrome, some seven years ago, Singing Hands is clearly going from strength to strength encouraging the use of signing and singing with babies and children, especially those with Down's syndrome or other special needs.
Signing is in Makaton (which was developed from British Sign Language) and is now led in nurseries, playgroups, schools, youth groups and local libraries. The founders, Tracy Upton and Suzanne Miell-Ingram, are keen to raise disability awareness, promote inclusion in the community and the benefits of signing with all children.
In addition to visiting so many groups in their own time, these ladies have produced two signed song books with accompanying CDs and have also contributed to seven BBC TV Something Special programmes for the autumn.
The Nordoff-Robbins Music Therapy Centre is recognised as the source of high quality guidance for using music therapy with children and adults with communication, emotional and behaviour problems.
At our dsOK meeting in May, Mrs. Jean Eisler explained her belief, from many years as a qualified music therapist, that music therapy should be available to all children with Down’s syndrome. We are all rhythmic beings (walking, breathing, heart beat), everybody responds to the universality of music.
Children with Down’s syndrome benefit from this being activated. Short limbs, weak muscle tone, poor co-ordination, possibly hearing loss can all mean making music is a daunting prospect. Weekly half hour interactive sessions were recommended to lead the child to respond using sounds, to encourage the child’s voice to use higher and lower notes, to enjoy the fun of making sounds and of singing and dancing, all of which build confidence. Making a colossal noise with drums and cymbals has been found to help to get rid of anger.
Open Days are held at the Centre, 2 Lissenden Gardens, London NW5 1PP
Were you impressed by the originality of the books on the Merry Publishing stand at our meeting in May? Great opportunities for fun learning for our children to improve speech and language. Visit their website for a taste or request their catalogue 2006 and order form from: Merry Publications, Pineglynn, Orange Tree Hill, Havering-Atte-Bower, Essex RM4 1PB
Source of invaluable information for parents and teachers of babies and children with Down's syndrome, DownsEd (The Down Syndrome Educational Trust at the Sarah Duffen Centre, Portsmouth, PO5 1NA), will be holding trainings during the autumn. From birth to 3 years on 18 September; Pre-schoolchildren on 2 October. For children in mainstream: 5 - 11 on 16 October; 11 - 16 on 30 October; over 16 on 13 November. In addition there will be an Open Day on 26 October.
Striving for Children’s Additional Medical, Physical and Personal Support is the full name of this charity which was formed in 2004 by parents whose youngster with special needs attended JOG. Others wishing to join will be asked for an annual contribution of about £5 to cover costs. Send to the Newsletter Editor, P.O. Box 503 Epsom, Surrey KT17 9D payable to SCAMPPS. JOG is the Junior Opportunity Group run by the East Elmbridge and Mid Surrey NHS Trust which offers a range of therapies to children with a difference.
Twenty one and Co, a local charity for children with Down's Syndrome and their families, are pleased to announce a new speech and language group for children between 1 and 2 years old commencing in September. This will be added to the existing groups already run by the charity at DSA National Office in Teddington, which cover ages 2 to 10 years old. There is a very limited space in the 1-2 and 2-3 year age group on Tuesday mornings and if you are interested in joining us please call parent member, Tatty Bowman.
020 8549 6623
Anna Bird, member in Crawley, tells us about SNAP (Special Needs and Parent’s group): "This is a support group for parents of children with additional needs, and meets at The Children's Centre, Creasys Drive, Broadfield, Crawley, West Sussex every other Tuesday, 10.30 - 12. This venue has a lot to offer including a brand new sensory room."
Kim: 01293 518656
Anna’s son is one years old and Anna is interested in starting, at the Centre, an informal friendly Parent and Toddler group (0 - 5 years) for children with Down's syndrome. Please email her if you support this idea.
raybird999@aol.com
Formed in January, this voluntary group is called Me Too & Co and offers structured and fun activities for children with additional needs, with support from professionals including health visitors, counselling, workshops and even Kids Yoga and a creche. Membership is not restricted to Richmond residents. Information sheets listing programme details are published.
Anne-Marie Asgari Tel. 079466 46033.
me2.co@hotmail.com
A member tells us: "this library reopened in May which is great news. It can be found 10 am - 12 noon at the Friends’ Meeting House, Eden Street (opposite Heals and next door to Primark). It has a sizeable stock of toys especially suitable for children with special needs, and lots of other good toys. These can be borrowed for a month for a very low cost.
There is also a (free) play group for under threes run by a group of parents, many of whom have special skills. More help always welcome! The service is run by Roma Lear".
(In the early years of the DSA South East Branch (1970s), the DSA’s first Branch, Roma Lear gave some fascinating presentations to parents of babies and children with Down's syndrome. It is good to hear parents are still benefitting from her superb expertise.- Ed.)
Roma Lear: 020 8398 6565
Although rather far away, do note the date for the third of these excellent social events. Your trustees, and many members, feel it is important not only for families with a member with Down's syndrome to meet others but also for brothers and sisters of a child with Down's syndrome to meet others in the same situation.
Sunday afternoon, 3 December, alongside the London Road (A24) at North Cheam. Some children found the sound level intimidating last December so the programme is being altered to avoid loud noise but Father Christmas will be there!
It is hoped to hold a social event for our young people with Down’s syndrome (aged over 13) and their friends and families. Bowling has been suggested. Readers, please tell a trustee if you have support for this.
Perhaps the young people themselves would like to contact us through our
forum
We are advised that the chairman of the Walsall group, PROUD, has created a fantastic video montage of her daughter which has certainly raised awareness. Well done, Jo Yarnall!
Ideas are already coming up for activities which could be held next year as part of an existing fair or carnival. Please let trustees know if there is an event in your area in June which could be suitable for a stand or perhaps a group of dancers with Down's syndrome.
Down’s Syndrome London told us in July of classes for children with Down’s syndrome aged 3+ to be held in the summer holidays
"Yoga for the Special Child increases emotional stability and self esteem and promotes an overall sense of well being. Siblings welcome. The leader has been trained by the parent of a child with Down’s syndrome. Classes are held at The Special Yoga Centre which is the UK base for Yoga for the Special Child and offers sessions for individual children as well as specialised training for yoga teachers”.
Details of future courses: The Special Yoga Centre, 2a Wrentham Avenue, London NW10 3HA
Sutton Eagles Special Needs Football Club offers fun football coaching for 5 - 16 year olds at Westcroft Leisure Centre, Carshalton. A bright leaflet and attractive website tells us it began in 2004 and is run by parents with coaching by Crystal Palace FC. Dates for the autumn (alternate Saturday afternoons) are listed on their website
The current
London Cyclist describes a dozen colourful children's books in which pedal cycles make fun stories. Websites mentioned in the article include:
Alternatively ask at your local children’s library or contact Shirley Quemby.
For a well organised and most pleasurable cycle ride for funds for excellent causes (including the Down’s Syndrome Association), note the date of Sunday 15 July 2007 for the next Capital to Coast. You can ride half of it if the full distance is too far.
A member has found: "...the nicest swimwear/bibs/clothing for children who are disabled and in wheelchairs" from Racketys, recommended by SWAN (Syndrome Without a Name). "They also do vests with poppers underneath for older children - handy for keeping nappies on. Really pretty designs, and well thought out."
Topics and speakers are already being planned for Saturday 12 May 2007. However, readers' requests for subjects will be welcomed by trustees. Please note the date for next year's diary and we look forward to you and your families joining us.
A member has suggested that parents having difficulty obtaining benefits to which they feel entitled could find the theyworkforyou website helpful
