downsyndrome OK 
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affiliated to Down's Syndrome Association | 
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downsyndrome OK
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affiliated to Down's Syndrome Association |
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Dear
Parents and Friends, We
look forward to meeting you at our annual Open Day on Saturday 7 May
in Cheam, very close to public transport. Full details will
accompany our next newsletter but please note the date now. Members
who come find not just the talks helpful but meeting other parents
and professionals and the opportunity to share thoughts and ideas.
The crêche will again be restricted as the day is very long for
children to be confined with strangers so please make arrangements
for childcare in good time. Our speaker on Wills and Trusts makes
her talk really positive and interesting, our speakers after lunch
will include an expert on the teeth of children with Down’s
syndrome - a vital subject which affects their smile and confidence.
As last year, the day will end with small group discussions over tea
and cake. Parents, professionals and relatives will all be welcome
especially if this will be your first experience of a dsOK meeting. Shirley
Quemby, Editor PARENT
CONTACT LISTS Parents
sometimes feel they need to contact others in their area which is why
the Branch, now downsyndrome OK, initiated Parent Contact Lists for
DSA members. Since the formation of dsOK more than 200 parents have
asked to join the lists. We still require membership of DSA or dsOK
and your signature to show you are willing for your details to be
disclosed to other members. We
now enclose the latest list. Please respect this information. We
hope it will help if you are new to the area, new to being a parent,
seeking information about local services, or even hoping to form a
local parent group. Please contact membership secretary, Janine
Brewster, with any queries. To
keep this free service manageable, your trustees are considering
copying Down Syndrome Extra 21 (formerly DSA North East Thames
Branch), who simply publish details of one contact person in each
centre of population. Are there any readers who would like to
volunteer to take this on for the benefit of parents in your area?
Please contact a dsOK trustee. dsOK
PICNIC Please
keep the date now and plan to bring your family and friends along to
the picnic and treasure hunt planned for Sunday 3 July, from
noon, wet or fine. Tilgate Park near Crawley is the chosen venue as
it is easy to access by road or public transport and it has many
attractions in addition to meeting our members!
GROW
OUR FUNDS! Donna
Self has found Sutton’s Seeds will provide financial support for
our work. Please make use of the catalogue for your garden or
window box - share it with your friends - to the benefit of dsOK.
Please email Donna giving your Name, postal address and phone number to get the catalogue and the ordering instructions.
MAGGIE
ALMROTT The
resignation of Maggie Almrott as a trustee will leave a gap which
will be difficult to fill. Not only has Maggie looked after our
library for many years, bringing the books to each Open Day, but she
has quietly and efficiently kept tabs on the books on loan. With
the books Maggie has stored our stock of DSA banners which have been
sold at cost to many affiliates around the country. The particular
skill of Maggie with husband Graham and indeed the whole family has
been the provision of imaginative activities at our Fun Days and on
other occasions. We all thank you, Maggie, for your selfless
service to the Branch and to dsOK.
WE
THANK YOU! Our
hon. treasurer, Karen Edmonds, would like to thank Mrs Margaret
Morrin for organising a celidh on the 8th October 2004. Her
generous endeavours raised over £200 for us and we are
especially grateful to the West London Set. What a great way to
raise money by dancing for it! In addition, thanks are extended to
Mrs. Morrin, Carmel Sagrott, Bernisi Morrin and Louise Kirby for
their contribution to the dsOK Christmas party. The Edmonds family
thoroughly enjoyed themselves. The entertainer and Father Christmas
were great hits! It was wonderful to see so many families there who
we have not seen before. The venue was perfect and we have to thank
the manager of the club, Kerry Celino, for her generosity and
friendliness. For these two events, we must thank the enthusiasm
and initiative of dsOK trustee Janine Brewster. FLORA
LADIES Our
Chairman has received a cheque for £15 being part of the entry
fees of three (at present unnamed) runners in the Flora Light
Challenge for Women in September 2004. We thank most sincerely the
three ladies for taking part on our behalf. Well done! (May we
know who you are?). The date for 2005 is Sunday 4 September. SPONSOR
FORMS As
the season for sponsored activities approaches, bear in mind that
dsOK will be pleased to supply you with sponsor form and fundraising
pack. Logo’d T-shirts are being ordered, too. EASY2NAME Fundraising
is progressing well with EASY2NAME sales. Trustee,
Mrs. Jo Tofts
has plenty of EASY2NAME leaflets to enable you and your friends to
select and order the name labels most appropriate for your own and
your children’s needs (in good time before the new term or
school year). Elderly folks in care homes require their clothes
labelled, too. dsOK receives a commission on all sales on the
leaflet.
DSA
GALA BALL The
DSA’s spectacular (almost annual) ball, A Night at the Oscars,
will take place at the Sheraton Park Lane Hotel on Saturday evening
19 February. You could consider getting friends together and
booking a table for a fantastic night out. Details from DSA 0845
230 0372. IN
KIND DIRECT National
office reports in their BULLETIN, which is sent to DSA
affiliates, details of a charity named ‘In Kind Direct’
which distributes excess consumer goods to not-for-profit
organisations. Payment is required for registration and the
catalogue and for handling charges. The variety of goods on offer
is extensive. To find out more, tel. 020 7860 5930 or
www.inkindirect.org CAR
SEATS FOR YOUR CHILD A
parent has been experiencing difficulties with ensuring her daughter
remains properly strapped into a car seat while travelling. She
recommends the In Car Safety Centre in Milton Keynes which supplies,
checks and fits car seats. In Car Safety Centre, The Auto Centre,
Stacey Bushes, Milton Keynes, MK12 6US. Tel. 01908 220909 (fax
01908 317536). They offer advice over the telephone on whether your
child’s seat is compatible with your car. Your
local Road Safety Department could have an expert on car seats.
The Royal Society for the Prevention of Accidents (RoSPA) publishes
guides. See also www.carseats.org.uk
BOOKS
BEYOND WORDS This
series was created by Professor Sheila Hollins and the St. George’s
Hospital Medical School with others and provides valuable help for
anyone with a learning difficulty facing a life change or crisis.
They help people with limited comprehension to understand feelings,
adjust to change and make their own decisions. To find more
information visit www.intellectualdisability.info. This website
also offers guidance on many health issues relevant to people with
Down’s syndrome. Order the books from the Royal College of
Psychiatrists, Book Sales Department, 17 Belgrave Square, London SW1X
8PG tel. 020 7235 2351 ext. 146. SNAPSHOTS Contact
a Family Sutton newsletter reports a book entitled Snapshots of
Possibility which describes how the ‘dream’ of
inclusive education of a few years ago is beginning to become a
reality. £8.50 + £1 postage from The Alliance for
Inclusive Education, Unit 2, South Lambeth Road, London SW8 1RL tel.
020 7735 5277 www.parentsforinclusion.org/voices.htm STEPPING
OUT The
Newsletter of Down Syndrome Extra 21 describes a helpful book
entitled STEPPING OUT, using Games and Activities to Help your
Child with Special Needs by Sarah Newman, ISBN 1843101106 in
paperback (368 pages), Jessica Kingsley Publishers, £14.95 at
www.amazon.co.uk DADS’
ZONE AND PARENTS’ SITE Contact
a family has set up for Dads of a child with special needs:
www.cafamily.org.uk/dads.html One group formed as a result now runs
football for themselves and their children. CaF have also set up a
site which will enable parents to get in touch with others with a
child with a disability: www.makingcontact.org TAX
CREDITS Contact
a Family offers a leaflet to explain claiming tax credits. To order
the free guide, tel. 08088 083555 or go to
www.cafamily.org.uk/taxcredits.html HELP,
HOW CAN I ... (an
occasional series which welcomes problems and solutions from readers)
...
help my child to do up and undo buttons Tasks
which require dexterous movements are frequently difficult for a
child with Down’s syndrome. Much encouragement to use fingers
separately will be needed. Start early! Books of finger rhymes
could help this to be fun. The pincer grip (using thumb and
forefinger) often has to be taught and will be necessary for correct
use of a pencil. Our founder, Rex Brinkworth, suggested placing a
small attractive item in a narrow-topped jar. Remember, even using
both hands at the same time is quite a challenge. Many
fastenings are tricky for our child with short stubby fingers -
closing and zipping a jacket, tying a tie or shoe laces and doing up
buttons. Lengthening the shank on a button, especially at the neck,
will assist with ’turning’ of the button to steer it
through the hole. Button holes could perhaps be enlarged a fraction
too. Try covering the child’s hands with yours, from behind,
so that you do it together. Patience and careful teaching with the
child’s visual attention will resolve the problem especially if
the child is motivated/keen to master the task. Wording to
accompany the task can help e.g. grip button, turn, open the hole,
grip with the other hand, pull through. What joy (smiles and
applause) when the pupil achieves it alone! Be sure to continue the
praise for some days. Without this encouragement the child could
lose interest in the achievement. STUDENTS’
STUDIES It
is pleasing that more students are taking an active interest in
Down’s syndrome and wishing to consult the experts - parents.
However, this often means we are asked to send out questionnaires.
We have promised your details will be used only for dsOK purposes and
your trustees feel mailing questionnaires is beyond this unless,
perhaps, the questionnaire is enclosed with a newsletter. We plan
to consult you at the meeting on 7 May. TRANSITION The
transition from Primary to Secondary education is a major step for
any child. Our child with Down’s syndrome will benefit from as
much explaining and discussion as possible to prepare him or her for
at least some of the differences. There is one vital aspect which
is rarely aired: the increased independence which comes with
travelling greater distances, possibly using public transport, and
generally not being seen out with a parent. Although children aged
11 - 14 feature highly in road casualty statistics, accidents are
avoidable with training.
Full details in the next dsOK news. As 100 members and friends came to the
Christmas party, it is hoped this social event will also be really
well supported so that your family members meet other families with a
child or adult with Down’s syndrome. Please plan to bring food
and an activity to share.
It
is never too soon to begin to teach a child to cross the road.
Never step off the kerb without stopping. Consistent
reinforcement, with plenty of experience of walking, will stand the
child in good stead. Consult the Makaton roadcraft publication if
your child enjoys signing (tel. 01276 675564 www.makaton.org or
purchase (£25) from Mrs. Carole Walker of London Accident
Prevention Council tel./fax 01322 525880).
Once the destination is known, selecting the route and practising the journey before term begins, and possibly accompanying some of the way at first, could help the child to have the confidence to override any encouragement by less careful peers to take risks when waiting at the bus stop or crossing roads. At the end of the school day the child will be tired. Both journeys will need practice to aid concentration when coming home.
BREAK TIME HELP
East Berkshire Autistic Support Group is pleased to present: ‘Give me a break!’ Break times and lunch times are often a difficult part of the school day. For children with Autistic Spectrum Disorder (ASD) these can be extremely stressful, confusing, frightening and overwhelming, leading to isolation, bullying or outbursts of inappropriate behaviour. EBASG with SAMS (Specialist Autism Mainstream Service) have arranged an evening with a speaker to assist parents and professionals, on Wednesday 9 February 2004 at 7.30 pm in Maidenhead. Charge £5 per person which includes a free copy of the NAS booklet Understanding difficulties at break time and lunchtime. East Berkshire DSA group tell us we would be welcome. Book in advance to EBASG, 1st Floor, 20 Queen Street, Maidenhead, SL6 1HT, together with your payment.
Would readers like a trustee to contact the speaker to arrange for a similar session at a dsOK Open Day? Perhaps we could obtain a copy of the free booklet.
DOLLS WITH DOWN’S FEATURES
From time to time we have been asked whether such dolls are available. Some years ago some samples were brought to a Branch Open Day but parents there generally felt they did not serve any useful purpose. However, we have just been informed by a parent of a 4 year old, Renee, living in New Zealand, that such dolls are again available. Visit the website www.downsyndromedolls.co.nz or contact Christel van Baalen via that website.
MEDICAL PROFESSIONALS
Our trustee, Donna Self, will be speaking in May to health care professionals on the experiences of parents of a child with Down’s syndrome when dealing with medical professionals. Please send her your experiences, both good and bad, as soon as possible. From the earliest days your editor always noted the name of each professional who offered advice (in the 1970s some was terrible!) and recommends this practice to new parents even today.
On BBC News recently a representative from the Disability Rights Commission was asking why people with learning disabilities seem to die younger than the general population. It seems doctors are not looking beyond the learning disability to see the real ailment. Professor Sheila Hollins has been involved in the research which means improvements are likely to be in place in time for many of our offspring to receive proper medical care if needed. Nonetheless, teaching our children good health care could help. Send your reports to Donna Self and, if you wish, to Professor Hollins at St. George’s Hospital Medical School, Tooting.
NUMICON AND BEHAVIOUR TRAINING
Thanks are due to trustees Helen Long, Jo Tofts and Karen Edmonds who, working with the London Borough of Sutton, ran a superb day for education professionals on 5 November. Romey Tacon’s enthusiasm for Numicon to help anyone to understand arithmetic was infectious. Numicon can be used imaginatively to explain visually so many aspects which children often find impossible to understand with conventional teaching. Half the day was spent with Mrs. Heather Roberts who used her skills and understanding of children with Down’s syndrome to help her audience to prevent and solve problems of inappropriate behaviour in the classroom. If you would like a similar event in your area, perhaps with the support of the education authority, please contact Helen Long.
REX BRINKWORTH MBE
Some parents could be puzzled at the apparent limited ability of many people with Down’s syndrome over the age of about 30. Unfortunately, in the 1860s Dr. Langdon Down thought that people with his collection of characteristics i.e. the syndrome that bears his name, could not learn. It was not until Rex Brinkworth’s daughter, Françoise, was born 100 years later that it was shown that babies and children with Down’s syndrome could learn and be improved by early stimulation. Prior to 1970 children with Down’s syndrome were generally looked upon as ineducable. So the parents of the older people who you could have met were probably told ‘he/she will never do anything’. We have an immeasurable amount for which to thank DSA founder, Rex Brinkworth, who had studied Down’s syndrome for 30 years before Françoise was born with the condition.
AWARENESS WEEK
Although this is usually half term week, we are all encouraged to join in or lead an activity to increase awareness about Down’s syndrome in our local area and perhaps as well to raise funds. Remember to make it clear whether funds raised will be for the Down’s Syndrome Association or downsyndrome OK. Please note the dates: Monday 6 - Sunday 12 June 2005 We understand there will be a special exhibition at the Langdon Down Centre - well worth visiting especially if you have not yet managed to do so.
TWO WHEELS OR THREE?
Should our child be given a pedal cycle with stabilisers and in due course be taught to balance or should we assume that skill is too difficult and seek out a tricycle? As a lifelong cyclist who has taught many people to balance including those with Down’s syndrome, your editor strongly recommends you assume your child will learn to balance. Do not mix the two. Controlling a three wheeler is entirely different from steering a bicycle. As for all riders, the machine must be the right size and correctly adjusted as the child grows. Shirley Quemby is always willing to help with whichever course you choose. Ask her for ‘Mastering a Pedal Cycle’ for some ideas.
CYCLING FOR FUN
To enable your child (and all members of your family) to try out different sorts of pedalling machines - even hand cranked 3 and 4 wheelers - visit one of the centres which offer this experience. London Recumbents (020 7223 2533 or 020 8299 6636 www.londonrecumbents.co.uk) in Battersea Park and Dulwich Park and a similar centre at Cuckmere Haven. Centres especially designed to provide fun for people with any sort of disability include Companion Cycling in Bushy Park (020 8979 2003), a charity run by volunteers for which booking is essential, or Croydon’s smaller equivalent (Liz on 07946 362193 www.croydon-lcc.org.uk/info/cycling_for_all.htm)
RARE BREEDS CENTRE
This centre is owned and operated by the Canterbury Oast Trust which provides work and accommodation for many people with learning difficulties at several places in East Sussex and the far corner of Kent. The Rare Breeds Centre is at Woodchurch, on the B2067 south of Ashford, less than 15 minutes from junction 10 of the M20, nearest railway station Ham Street. It has everything you could want for a family day out and is also a conference centre. Open all year from 10.30 am except Mondays in winter and Christmas Eve, Christmas Day and New Years Day. For details and party bookings tel. 01233 861493 www.rarebreeds.org.uk
BECOME A TRUSTEE?
For some years our membership has benefitted from strong leadership from our twelve trustees. All are volunteers and all are parents of a child or adult with Down’s syndrome. It is this strength that has enabled us to hold Education Days, Open Days and, recently, our first and super Christmas Party. Two of our trustees have found it necessary to stand down and we are sorry to announce that Mrs. England will be resigning at our AGM on 7 May. Downsyndrome OK members are invited to consider offering to support our organisation in continuing to help our families by volunteering to become a trustee, perhaps even our new secretary. You can contact present trustees by telephone or email to find out what is involved so that you are ready on 7 May to have your name put forward or to volunteer yourself. We meet in members’ homes and benefit greatly from sharing problems and joys with each other as well as ensuring good progress for dsOK.
SOCIAL EVENTS
A teenage disco has been requested and a social time for parents. Watch this space! Do come to the Open Day in Cheam on 7 May to discuss these and other ideas to help your trustees to plan what you need.
CARSHALTON DRAMA
Kathy Maillet has a space in her successful weekly calss at the Thornton Road Centre, Carshalton, for a child aged 6 - 11 with Down’s syndrome. Tel 020 8669 8942.
DATES FOR YOUR DIARY
Sunday 13 March dsOK trustees’ meeting
Saturday 7 May dsOK Open Day and AGM
Monday 6 to Sunday 12 June Awareness Week
Sunday 3 July picnic at Tilgate Park
Sunday 10 July dsOK trustees’ meeting
Saturday 1 October Education Day
Saturday 15 October DSA AGM