W.O.R.D.S Issue 1
The news sheet of
the Worster-Drought Syndrome Support Group
CONTENTS |
One very important
point, is that what we are planning is designed to help you the families like
ourselves living with Worster-Drought. We do need feedback, about the planned
activities, are they a good idea are there better ideas out there? Please tell
us so we can best support you. There are committee members phone numbers listed
elsewhere in the newsletter.
Our thanks go to
Yvonne Phelan who ran in the 1997 London Marathon and raised £280 for the
WDS group. Yvonne from Sheffield, is the friend of one of the grandparents who
came to the family day in 1996.
Simone Whiteway
(Information leaflets)
I am married to Alastair and we have a two year old little girl, Alice, with
Worster-Drought Syndrome. She has very severe feeding and speech difficulties,
but, despite this is an extremely bright and cheerful little girl. My current
role within the group is to produce information leaflets for parents and professionals,
in collaboration with the other members of the committee.
Des Nutter
(Chairman)
I am married to Anita and we have a five year old son, Thomas who has Worster-Drought
Syndrome. His major difficulties at present seem to be speech and fine
motor skills, with a good degree of clumsiness thrown in for good measure, although
he is a very loving and affectionate child. He has two sisters, Chloe
aged seven, and Megan aged 14 months. My current role within the group is to
act as chairperson/co-ordinator and generally to provide help and assistance
to the others on the committee in their activities.
Vanessa Butt
(web site)
I am married to John who is a software Engineer and works for a well known telephone
company. We have two sons, Paul who is just sixteen and is busy doing work for
his GCSE's and then there is Martin who is thirteen. Martin has Worster-Drought
Syndrome. Martin is a happy child who loves life he is a member of our local
Boys Brigade, and has a busy social life. His major difficulties are with speech,
he has a Communication Aid (ORAC ) which talks for him. He also uses a symbol
book and limited signs, this might sound daunting but he makes himself understood.
My role within the group at present, is with the aid of my son and husband to
create a Web page for the group.
Andrew Hinks
(Newsletter Editor)
I'm married to Karen (Group Secretary) , our six year old son Thomas has mild
symptoms of Worster-Drought Syndrome, we also have two other children Alex aged
three and Clare who was born in October 97. Thomas has difficulty with speech
and understanding but with the help from a support assistant in class he is
coping well with main stream school, probably helped by his friendly personality.
His tip toe walking has yet to be tackled. Karen and I found getting information
on Worster-drought difficult, probably because there's so little of it, so the
opportunity to talk with other families has helped so we now don't feel alone
with the problem. I am the editor of the newsletter.
Jane Thorpe.
(National contact)
I am married to Richard and we have two sons, Oliver aged 13 and Sam aged 10.
Sam has Worster-Drought Syndrome and it was our desperate search to find relevant
information and speak to another family in a similar situation which encouraged
me to form the WDS support Group.
Julie Glass.
(Family day coordinator)
I am married to Ray and we have two children. Nathan aged 6 who has Worster-Drought
Syndrome and Rachel aged 3. Although Nathan's major difficulties are fine/gross
motor co-ordination and speech/Language, he still has a great desire to communicate,
and does this very effectively by a combination of Makaton, eye contact and
oral language. He is a very happy and loving child who is developing an artistic
flair. Nathan's needs are currently being re-assessed after a successful SEN
Tribunal Appeal. My fist role within the group is to arrange the next family
day.
After the success
of the first family day, we are trying to arrange another day where we can get
together. The provisional date is 14th November 98. The location, Coventry,
hopefully this central location gives everyone an opportunity to reach the meeting.
The Room is being offered to us free of charge by the Hotel, and we will be
applying for a grant from Children-In-Need to fund the days activities. Booking
information for the day will be sent out with the next newsletter in August.
We would like to
acknowledge the support from Linda Partridge, Senior National Development Officer
at Contact a Family. Without the help of the Contact-a-family organisation its
unlikely our group would have been able to start.
More support for
parents of children with special needs and developing special schools as centres
of excellence are included in the most far-reaching review of special education
for almost twenty years launched by Education and Employment Secretary David
Blunkett. A Green Paper - Excellence for all children - meeting special educational
needs - begins a process of consultation on how to achieve high quality
provision for all children with special educational needs (SEN). The 99 page
Green Paper and its summary version are available on the Internet. The address
is http://www.open.gov.uk/dfee/dfeehome.htm.
Comments can be e-mailed to fee.sen@gtnet.gov.uk.
The Title for the
newsletter came about from a discussion at the first committee meeting about
the newsletter and what to call it. With a flash of inspiration Julie Glass
thought up "W.O.R.D.S" which is the first three letters of Worster
the "D" of Drought and the "S" of Syndrome. "WORDS"
seems to be very apt as after all, words are what we want from our children.
Although we have
made a start at bringing the group together we do still need additional help.
We still need a volunteer to act as group treasurer. This is an important job,
but it wouldn't take much time as our funds are quite small. Also fund raising
is important for things like the newsletter and the family day. If anyone has
skills in fund raising or may be running the odd marathon then any support would
be very welcome. Contact Des Nutter for details.
Newsletter number
2 will be printed in August with all the details for the
Family day.