Dear Members and Friends

NEW SECRETARY, JO
We were all sorry to say farewell to Liz England after her most valuable service not only as our secretary but a talented caterer and generous fundraiser too. Thank you to Jo Tofts for stepping in to become our new secretary and our primary contact with National Office. Jo has already shared her computer and organisational skills as a trustee for some years to our benefit.

AWARENESS
Understanding the condition, Down’s syndrome, is generally limited which is why Down’s Syndrome Awareness Week is so important each year. One trustee, Donna Self, felt she wanted to make sure the families and acquaintances who were in contact with her son had the opportunity to learn more about Down’s syndrome and she produced a small leaflet to be sent home with each child at his school.

This will shortly be placed on our website so that other parents can consider copying in time for Awareness Week next June. Versions suitable for class mates of older and younger children are planned.

CHRISTMAS PARTY
With sincere thanks again to Mrs. Brewster’s family, another dsOK party is being arranged. Make a note of Sunday afternoon 4 December at North Cheam (A24) - Father Christmas has already booked the date. For our ‘older’ families, a disco for young people (all ages) will follow the party at 5 - 8 pm. Your invitation will be in the post nearer the time.

PARENT CONTACT LISTS
More than 200 of you signed application forms asking to join the Parent Contact List for your area. All were mailed with the January dsOK news. Sincere thanks to Janine Brewster, our Membership Secretary, for collating such a mass of information.

Please be sure to notify her if there are changes in your details. Consultation with members present at our Annual General Meeting in May made it clear that you wish to retain this system not change to appointing volunteer parent contacts in centres of population in our area instead.

CROYDON 10K
Our best wishes to new trustee, Jason Vine, who has signed up for this fundraising run in October on our behalf. www.croydon10k.com

MEDICAL ADVICE
Members are reminded to keep an eye on the Intellectual Disability and Health website that the DSA has set up with St. George’s Medical School; www.intellectualdisability.info

EASY2NAME
Downsyndrome OK continues to benefit from sales of these useful labels provided you order or re-order on one of our forms or quote DownsyndromeOK when you order on line. There are labels suitable for all sorts of surfaces so everything which will be going to school this term can be named safely.

SUTTON’S SEEDS
Thank you to those members and friends who bought plants and seeds from the Sutton’s seeds catalogue which we sent to you in January. Unfortunately, we did not make a great deal of money but, as the phrase goes, ‘you have to speculate to accumulate’!

THANKS TO MRS. STEWART
Our treasurer is delighted to be able to thank Mrs. Stewart once again. For the second year running, Karen Stewart has donated the proceeds from her Charity catalogue. Thank you, your thoughtfulness is greatly appreciated.

INDEPENDENT TRAVEL
Possibly one of the hardest parts of being a parent is judging when to ‘let go’. For our child with Down’s syndrome, this is a quite frightening challenge. To achieve it entails many years of thorough and detailed teaching and guidance starting with walking together, discussing traffic, and crossing roads. Makaton have produced a book to help signers. London Accident Prevention Council also offers small publications, some available from London Boroughs Road Safety Officers or all may be obtained direct from:

For help mastering a pedal cycle, ask Shirley Quemby for her free information sheet.

PEOPLE FIRST
This self-advocacy organisation run by and for people with learning difficulties is planning to move from Kentish Town Road, London NW5. The new address of their head office will be 20 Albert Embankment, London SE1 7TJ. There are local groups throughout London and the rest of the country which welcome people with learning difficulties/disabilities aged 18 and over. Visit their website for more information: www.peoplefirstltd.com or email general@peoplefirstltd.com

ITALIAN WAITERS
Readers of the Daily Telegraph 14 July will have enjoyed the report of the Pizzeria in Rome which employs waiters with Down’s syndrome. Sadly, at first, some customers walked out when they realised the waiters had Down’s syndrome but perseverance has won and the 100 seat pizzeria is soon to move into larger premises where more with Down’s syndrome will be employed. They are capable cooks as well but prefer the human contact of waiting at table. Our Chairman sought this establishment when in Rome in August but without success.

BILD BOOKS
The British Institute of Learning Disabilities has produced three booklets about ageing and dementia for people with learning disabilities. Details on www.bild.org.uk

SEX AND RELATIONSHIPS
The Family Planning Association offer videos on growing up, including Janet’s got her period. www.fpa.org.uk

MENCAP SNAPS
National Mencap have held a photographic competition, the results of which can be seen on www.mencap.org.uk/snap Several with Down’s syndrome feature as winners or subjects. (Take time to read the reasons for the photos - Ed.)

GLUE EAR
This recurring problem for many children with Down’s syndrome, is caused partly by the shape of the developing ear and aggravated by an infection. The charity Defeating Deafness publishes leaflets to help the child through glue ear (more common before age 4).

Telephone their helpline 01277 365618 for copies or visit www.defeatingdeafness.org/factsheets/glue-ear It should also be borne in mind that cranial osteopathy, by a practitioner experienced with babies with Down’s syndrome, could well help to solve the problem.

Mr. Geoffrey Montague-Smith has described his findings at DSA Open Days nationally and locally and is based at the Atman Clinic in Tunbridge Wells, email gms@atmanclinic.freeserve.co.uk or visit the website www.atmanclinic.co.uk

STAMMERING
Although a rare problem it is one which deserves as much help as possible to combat or solve. The British Stammering Association is updating leaflets and creating new ones for professionals, parents and for people who stammer. Contact them at

HEART DEFECT
It is a sad fact that many born with Down’s syndrome also have a heart defect. Parents who receive this diagnosis are recommended to contact the Down’s Heart Group, the national charity with both extensive relevant experience and understanding advice. Their address is PO Box 4260, Dunstable, Beds, LU6 2ZT. Tel. 01525 220379. www.dhg.org.uk

LEFT HANDED HELP
A left handed trustee has found Anything Left-handed and been thrilled with the goods they offer. Their head office is at 18 Avenue Road, Belmont, Surrey, SM2 6JD Tel. 020 8772 3722, www.anythingleft-handed.co.uk They have been specialists in left-handed items for 35 years.

BOOKLET AND LONELINESS
Sutton Mencap’s summer newsletter refers to a free booklet for families raising a child with a learning disability: First impressions - Emotional and Practical Support for Families Tel. 020 7803 1100 or log on to www.learningdisabilities.org.uk Your editor found on this site a series of thought-provoking ideas to reduce the incidence of loneliness or even prevent it. Whilst children and adolescents with Down’s syndrome are not specifically mentioned, many of us find that our young person does experience loneliness. The Foundation for People with Learning Disabilities does useful work and may be contacted for information on their ‘Older Family Carers Initiative’ (families where a parent is over 70) and Person Centred Planning. A member of their staff is the daughter (with Down’s syndrome) of a dsOK member.

JOEY DEACON
Some readers will remember a story of amazing courage and patience, the subject of an interview on Blue Peter maybe 25 years ago. Joseph John Deacon was born with cerebral palsy and was taught to communicate with eyelids and simple movements by his mother. He then spent fifty years in a subnormality hospital because teachers at his school did not understand him and care became too much for his mother. He was eventually befriended by one patient who could understand him. Between them, over a long time, they wrote Joey’s story entitled Tongue Tied. ISBN 0855 370777 new edition 1982. Little to do with Down’s syndrome these days thankfully but a fascinating book.

TEETH CARE
Selina Master, our lively and most interesting speaker on teeth and oral health at our May Open Day, guided us through the problems common with the teeth and gums of babies and children with Down’s syndrome. These include delayed development and eruption, missing or small teeth, weak enamel and greater likelihood of gum disease. Frequently encountered, also, are occlusal problems, fissured larger tongue, grinding or clenching teeth.

Mrs. Master recommended the baby’s first visit to the dentist at six months and offered many helpful ideas for managing any problems. She specially warned of the importance of extra care if the child has a heart defect to avoid sub-acute bacterial endocarditis when receiving treatment.

Mrs. Master told us that the worst time for poor teeth is when the person with Down’s syndrome is in their 20s. They are by then quite independent so their teeth cleaning would no longer be supervised. Parents, therefore, need to do their best to teach good practice while the child is younger. Your editor suggests perhaps a verse could help such as ‘Up and down and in between, round the back make sure they’re clean’. Send in your ideas for publication! (Does it have to be possible to be spoken during cleaning - through clenched teeth for instance!).

Many people with Down’s syndrome respond better if a good habit has been formed. Renewing your child’s toothbrush could also be on a fixed date or interval so that this habit, too, is carried into adulthood.

Mrs. Master is not only the Director of Dental Services (Community) for East Elmbridge and Mid Surrey Primary Care Trust but also the President of the British Society for Disability and Oral Health. In this capacity, she invited our trustee, Donna Self, to speak at their national conference on ‘Developing Care Pathways for People with Down Syndrome’. Donna’s subject was ‘A Mother’s Perspective’ which she did superbly.

WILLS AND TRUSTS
The talk by Mrs. Ruth Keighley at our May meeting held the interest of everyone present as she described the options on Wills and Trusts when there is a child or adult with a learning difficulty or disability in the family. Her illustrations and explanations made this potentially dull subject come to life, emphasising how important it is that every adult makes a will. Mrs. Keighley kindly provided information packs for us which included the address of her office in Bagshot and her telephone number 01276 475666. She extended the talk to describe the relevance of Enduring Powers of Attorney and how these may be arranged. Mrs. Keighley has since written to dsOK warning that the new Mental Capacity Act could affect the appointment of such attorneys in future. Mrs. Keighley remained at our meeting for the day so that she could answer individual questions during the tea and cake hour at the end of the afternoon. We are most grateful for her time.

SPEECH AND LANGUAGE
Reported in the newsletter of DSA affiliate, Downsyndrome extra 21, is an article reporting a talk by a Speech & Language Therapist who likens development to a stool. The seat is Understanding which is supported by three legs: Vocabulary, Social Skills and Speech. Tie bars to hold the legs together and make the stool stable and strong are Grammar. In the case of development in a child with Down’s syndrome, not all areas proceed equally thereby weakening the whole system. The article lists Strengths and Weaknesses and suggests activities to encourage development of Speech and Language skills, such as blowing bubbles strengthens and speeds mouth movement; increasing awareness of sounds by copying and recording is suggested. Slowing down your speech rate and gradually increasing new words will all help. Your editor has the full article or Mrs. Nussey in Chelmsford could be willing to send a copy (01245 351161).

GROUP IN TEDDINGTON
We hear from National Office at Teddington that a local parent group called ‘Twenty One & Co.’ meets at the Langdon Down Centre. Contact Sue Robson (020 8898 4506) for details. They have a sub-group which is interested in signing.

NASEN/TES EXHIBITIONS 2005
Once again, The National Association for Special Educational Needs (NASEN) and The Times Educational Supplement (TES) are joining forces at the Business Design Centre, Islington on Friday and Saturday 21st and 22nd October 2005. Members of the DSA Information Team and the UK Education Consortium will be at the event with a stand of information and publications. DSA National Office advise us that hundreds of other relevant exhibitors will be there and tickets are generally free. Contact 01827 311500 or go to www.nasen.org.uk for further details.

WWW.DO2LEARN.COM
This website is recommended by Sutton Children’s Fund to help parents whose child’s communication skills are needing encouragement. Although American, it offers some simple ideas for resources which could save time for busy parents. Colourful and easy to follow. The ‘Math’ section is worth looking at. www.do2learn.com

WISE WORDS
A parent, David McConnell, has created DVDs to assist his six year old to speak more clearly. As the child reads as if watching the TV, his concentration is excellent! The newsletter of DSA affiliate, Downsyndrome extra 21, describes David’s creation and offers his daytime telephone number 01799 551001 or his email address david@wisewords.org.uk For a free demo, or to order, go to www.wisewords.org.uk On the experience of your editor and others, your child could well begin to read and repeat these words from age three.

GROUP FOR SIBLINGS
A group is being set up in Twickenham to enable the brothers and sisters of a child with special needs to meet others, share thoughts and feelings and have fun. Children should be aged 9 - 14. For details contact Valerie Curen on 020 8831 6182 or email valerie.curen@projectchildren.org.uk The organisation has a website www.projectchildren.org.uk

EXTRA 21 EDUCATION DAY
Downsyndrome extra 21 (formerly DSA North East Thames Branch) invite our members to a conference at Chelmsford on Saturday 24 September. It will run from 9.30 - 3.30 with workshops on inclusion, curriculum, number and numeracy, behaviour, reading and computers. With many top experts, this will clearly be a valuable day for parents and professionals able to attend. For details email downyndromee21@aol.com or telephone 01277 365618.

WHO TOLD ME?
Over the years many parents have gleaned much advice from professionals, some more helpful than others. You are recommended to note the names of professionals who advise you and the information they give. The Down’s Syndrome Association, now itself 35 years old, has also collected a remarkable amount of knowledge which is freely available to members whatever the age of your child. Many parents are also delighted to share valuable tips that have benefited their child with Down’s syndrome and therefore their family. Whilst all the children are different there are also similarities which arise from the presence of the extra chromosome and its genes.

CONTACT A FAMILY
The CaF newsletter from Sutton and Merton is packed with activities for families who have a child (generally under 16) with a disability. Although the Summer issue relates mainly to ideas for the school holidays, it also includes activities for all year and for the whole family. Parents who live in Sutton or Merton who did not receive this newsletter may like to ask to join the mailing list for future reference: 020 8640 5525 or email: sutton@cafamily.org.uk National helpline and website 0808 808 3555 www.cafamily.org.uk

MENTORING
A magazine entitled SMILEZ, produced by the London Borough of Sutton Children’s Fund, reports that mentoring is available in seven local High Schools. Senior pupils are given six hours of training and are then matched with year seven students with similar interests who it is felt will need extra support when they move from primary to secondary school. Not only do the new children benefit but the sixth formers have described it as a positive experience which gave them increased confidence in their ability to understand and communicate with others. What a remarkable way in which to help our child with special needs through this critical transition period.

MAXIMISING ACHIEVEMENT
The DfES is finding that not all students with special educational needs in mainstream secondary schools are making the educational gains expected. Three booklets have been produced designed to maximise the attainment of such pupils. Order from Prolog, email dfes@prolog.uk.com or download from www.standards.dfes.gov.uk/keystage3/respub/sen_inc

BEING ASSERTIVE
A concern of most parents is how to ensure our child learns to make decisions so that they are not easily led when older. An article in the summer newsletter of DSA affiliate, Downsyndrome extra 21, suggests working with a daily or weekly chart on which decisions are illustrated e.g. an item of clothing each day, or the drink with breakfast. Plan the headings with the child.

SCOTTISH FORUM
Down’s Syndrome Scotland (of which dsOK are members) has set up an Xchange discussion forum on the home page of its website. DSS’s newsletter often includes most helpful articles which are generally placed on its site. For any family trying to cope with impossibly difficult behaviour the article by Karen Bain in the Summer 2005 edition (No. 79) includes advice and helpful references. A dsOK Forum is also planned for our website.

AUTISM RESOURCE
The National Autistic Society has launched a searchable database of autism services available across the UK. Called Public Autism Resource and Information Service, it is at www.info.autism.org.uk (Thanks to Sutton Mencap for this news).

CINEMA CONCESSION
The Cinema Exhibitors’ Association offers a national concessionary card for people with a disability. The card entitles the holder to one free ticket for a person accompanying them to the cinema. Applicants should be in receipt of disability living allowance, registered blind, or hold a disabled person’s rail card. Tel. 0151 348 8020 or visit www.ceacard.co.uk

HOLIDAYS FOR ALL
The 2005 brochure under this heading has recently been published and may be found on www.holidaysforall.org.uk Some of the addresses in this booklet were listed in dsOK news No. 2 (September 2003) whilst others are new, and vice versa. It is good to know there are openings for our young person with Down’s syndrome to have a holiday without parents. Please report back to this newsletter any experience your family has.

KEEN SWIMMER
An article in Swimming Pool Trade Magazine reminds readers of the continuing limited understanding of the ability of children with Down’s syndrome. A boy who could already swim a length was banned from mainstream swimming lessons in Barnsley. His mother took the case to the Disability Rights Commission and her son is now included in the class. In addition they were awarded £1,500 compensation. Your editor’s experience is that all children with Down’s syndrome love water activities and are able swimmers.

dsOK PICNIC
The dream picnic referred to in a previous dsok news has now taken place and was greatly enjoyed. More than 60 members, relatives and friends gathered around the picnic tables in Tilgate Park on Sunday 3 July, including seven dsOK trustees. The activities we brought along added to the fun and the sun even shone after lunch. Watch out for the date for a similar event next summer!

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