HATCHES, MATCHES & DESPATCHES!
HATCHES:
On Tuesday 14th January 2003, we held our General Meeting for all members of Down Syndrome Liverpool to vote for acceptance of the constitution.
I am pleased to inform you that the constitution was adopted by the membership.
This means that we can now apply to the Charity Commissioners
for registration and to the DSA for
affiliation. Once this has been completed, DSA
Liverpool Branch will cease to be and its work continued by the new charity.
Please note that only members of Down Syndrome Liverpool
will be listed on our database. Members of
the DSA will not be automatically included so if you
have not already joined, please think about doing so in order for us to
continue to offer you support when needed.
Colin Hill
Chair, DSA Liverpool Branch/DSL
MATCHES:
Liverpool 1 - Everton 1
DESPATCHES:
This will be the final edition of the DSA Liverpool Branch
Newsletter. If you have completed a membership form for Down Syndrome
Liverpool, you will continue to receive a newsletter from
DSL.
If you have not returned a membership form for DSL, you will find one enclosed with this newsletter. Please consider joining us because the more members we have the stronger we will be. Full membership is open to parents/carers of a person with Down syndrome and adults with Down syndrome. Associate membership is open to anyone else interested in promoting the cause of people with Down syndrome in Liverpool. This might include relatives of a person with Down syndrome, friends, professionals and organisations such as schools.
Membership forms (one per individual, please photocopy
if you need more) should be returned to:
The Secretary, Down Syndrome
Liverpool, P.O. Box 1, Mossley Hill
D.O., Liverpool L18 4SD
STUDY SHOWS PEOPLE WITH DOWN SYNDROME CONTINUE TO
LEARN LANGUAGE
SKILLS BEYOND ADOLESCENCE
The following article was sent to the Independent-DS-UK mailing list. It is of particular interest given the recent difficulties which have come to light concerning the lack of speech therapy provision for secondary school children with Down syndrome in Liverpool.
Children with Down syndrome can face many challenges -
health problems, hearing impairments and
learning disabilities, including those affecting language
development. While modern advances in medicine
have improved the health of children with this disability,
a concern remains about the development of
communications skills among these children.
Countering the claim among researchers that language learning
in children with Down syndrome ends
during the teenage years, a new study from the University
of Wisconsin-Madison suggests that
individuals with Down syndrome can benefit from language
intervention programs during adolescence.
Down syndrome is a developmental disability resulting from an extra copy of chromosome 21, and it affects about 5,000 new-borns in the United States every year. A century ago, most children with this disability reached the age of only 9; today, they live well beyond their 50s.
Most children begin learning language skills, such as
grammar and speaking, at rapid rates early in their lives.
Children with Down syndrome, however, typically experience
delays in language development, learning
more slowly and at varying rates.
"There's a fanning out of skills in individuals that
isn't seen in normally developing children," explains Robin Chapman, the
study's primary investigator and a professor emeritus of communicative
disorders at
UW-Madison's Waisman Center, a facility dedicated to
advancing the understanding of developmental
disabilities. For example, vocabulary learning may progress
much more rapidly than the learning of sentence structure, she says.
Though all these skills continue to improve throughout
childhood, Chapman says that some researchers
have claimed that the skills begin to plateau as a child
with Down syndrome reaches adolescence. As a
result of this claim, she notes, educational opportunities
for teenagers with this disability generally shift away from language learning.
Chapman's study, on the other hand, shows that certain language skills
continue to improve well beyond the teenage years, suggesting that adolescents
with Down syndrome should continue programs for language learning.
For the last six years, Chapman and her colleagues have
charted the trajectory of learning skills and
memory abilities in 31 individuals with Down syndrome
who were ages 5-20 at the study's start. Through
comprehension tests and storytelling tasks, they measured
each person's ability to understand complex grammar (language comprehension)
and his or her ability to speak it (language expression). While Chapman
found that some language skills may stop developing as these children reach
late adolescence, she also found that language expression skills continue
to improve well into young adulthood - and that their development depends
on the development of language comprehension skills, which do tend to
plateau.
The longitudinal pattern of language learning in individuals with Down syndrome, says Chapman, shows that language comprehension skills quickly develop during childhood, but that development slows down as the child reaches the teenage years.
Language expression skills run a different course. "The
biggest gap in language learning occurs between
language comprehension and expression," she says. But,
unlike the other set, expression skills continue to
improve throughout adolescence.
Chapman found, however, that the continued development
of language expression depends on at least
maintaining comprehension skills. "The rate of
change in expressive learning skills," she says, "is predicted by the rate
of change in language comprehension skills." For example, if an adolescent
acquires the ability to understand complex grammar more slowly, he will
also acquire the ability to speak that grammar more slowly.
These findings, says Chapman, point to the importance
of continuing language intervention during the
teenage years: "The study's findings suggest that there
should continue to be language work in both
comprehension and expression throughout teenage and young
adult years."
Furthermore, Chapman suggests that, because of the gap
in the development of the two skill sets,
language instruction should alternate its emphasis between
them. "Kids with Down syndrome can accomplish a lot," Chapman says.
"Think of Chris Burke who starred in the television show, 'Life Goes On.'
We need to maximize the opportunities so they can accomplish even more."
The study was funded by the National Institutes of Health
and the National Down Syndrome Society.
The findings are published in the October issue of the
Journal of Speech, Language and Hearing
Research.
Volunteers are needed to act as independent parental supporters
for parents of children with special
educational needs.
Liverpool Independent Parental Supporters and Parent Partnership
work closely together to provide
support for parents and there is a new opportunity to
train to become an independent parental supporter.
Changes to the current arrangements are planned but not finalised so this could be an exciting time to join as innovative ways of volunteering are devised.
Interested? For more details contact:
Edna Pye
9 Carnatic Road
Liverpool L18 8BY
Tel: 0151 729 0128
Thingwall Garden Centre is based at Thingwall Hall (Brothers of Charity Services), in Broadgreen, L14. They provide training facilities for people with learning disabilities and currently have vacancies in Commercial Horticultural, Retail and Garden Ornament Production. All training is within a ‘real’ working environment.
The Liverpool Branch has received a few copies of their
latest brochure detailing the training facilities
provided. If you would like a copy please
contact our secretary at the branch address. Alternatively, if you require
further information, or wish to arrange a visit, please contact:
Geoff Little
Horticulture Manager
Thingwall Administration Centre
Broadgreen
Liverpool L14 7NY
Tel: o151 228 4439
Fax: 0151 254 1951
Email:
bocthingwall@btinternet.com >
Web site:
www.brothersofcharity.org.uk
Football coaching sessions are to be run specifically for children with Down syndrome - girls as well as boys are welcome to go along. Initially, the sessions will be subsidised by Mossley Hill Athletic Club and will take place at The Greenbank Project Gymnasium, Greenbank Lane Liverpool 17.
The sessions commence on Saturday 25th January from 10.00
a.m. to 11.00 a.m., and are for children
between the ages of 6 and 12 years but if you have a
5 or 13 year old who is keen to attend, they would be welcome. All
that is required is suitable attire e.g. football kit or track suit bottoms
and T shirt and training shoes.
Older boys from Mossley Hill Athletic Club will be going
along to act as ‘buddies’ and to help with the
coaching.
The coach, Alan Atkinson, asks that, if you would
like to bring your child along, you give him a call on 0151 724 6181 to
give him an idea of numbers.
He will also be able to give you directions to the Greenbank
Project.
Approximately 2 or 3 children out of every hundred diagnosed with Down syndrome have the Mosaic form. It is, therefore, rare and information about how children with Mosaic Down syndrome develop, compared to children with standard trisomy 21 (standard Down syndrome), is limited.
The International Mosaic Down Syndrome Association
(IMDSA) was recently formed to support parents
who have a child with Mosaic Down syndrome and professionals
also interested in the condition. Through its web site, the IMDSA hope
to gain more detailed information about the needs of children with Mosaic
down syndrome and their families.
The web site may be found at:
www.imdsa.com
Other useful web sites are:
www.mosaicdownsyndrome.com
www.ds-health.com
We are delighted to have received the following letters
from parent members and would welcome further
contributions and comments from other parents or professionals.
Dear Editor,
I must write to you, that most comments and news are
about children. Don’t forget about the older
generation and parents who care for them.
My daughter aged 43, developed Alois-Alzheimer (dementia)
and Epilepsy after a life time of high
capability for a person with Down syndrome. I was
shocked to find that a high percentage do suffer from
dementia.
LETS HAVE MORE INFORMATION AND ADVICE ABOUT ADULTS.
I would like to know how to cope and how other parents
cope.
Doreen Roberts (Parent Member)
Ed’s reply:
Mrs Roberts raises a very valid point about the focus
of our newsletter being on children. This is because the committee is made
of parents with younger children who, therefore, have little or no experience
of adults with Down syndrome. It would be wonderful to have more contributions
from parents with adult sons and daughters and, dare we suggest, involvement
in the work of our committee. If you feel like putting pen to paper, please
feel free to do so and thanks again to Mrs Roberts for raising this issue.
Dear D.S.A.,
Just a note to say a cheque is enclosed after the small
fund raising event we did. Myself, my husband, my
mum Maria Chadwick and my dad Peter Chadwick collected
sponsors for Eddie Kane and his granddaughter.
They both ran on Sunday September 1st 2002. Eddie ran
the 13 mile race, while Emma ran the 1.8 km fun run in aid of our daughter
Faye who is 1 year old and has Down syndrome, she is so enjoyable to watch
growing up. We decided to donate the money to the DSA as we are sure you
could put it to
good use. The money was donated by friends, family and
work colleagues.
Please could you forward a receipt to the address above,
we would like to show it to family and friends.
Sincerely,
Toni and Billy Castley
Ed’s reply:
Many thanks to everyone who helped raise the magnificent
sum of £447 on behalf of Faye Castley pictured below.
Chris at the top of Moel Famau with Classroom Assistant
Mrs K Baxter
Mrs Baxter wrote the following article:-
Chris at Colomendy
He participated in every task given to him and gained a lot of self confidence from this.
During his stay in Colomendy he was very well organised and independent, credit must be given to Christopher's parents for this.
The highlight of Christopher's week was having his photograph taken at the top of Moel Famau. This was the ultimate achievement for the whole group.
DONATIONS
|
|
|
| Friends and Family of Faye Castley |
|
Donations for our Christmas Party
| Mr & Mrs Halls of Wallasey | £30 |
| Vic Webb | 42 Selection Boxes |
| Mr & Mrs Little | 6 Selection Boxes |
| Anonymous Donor | 18 Selection Boxes |
| Tesco, Allerton | £10 Voucher |
| J Sainsbury | 70 Food Boxes |
THANK YOU
SPECIAL NEEDS AND FAMILIES RESEARCH PROJECT
University of Wales, Bangor Sponsored by the PPP Foundation
Request participation on a research project in how family
members, especially parents/parental caregivers,
adapt to the care of children with special needs (specifically,
Down syndrome. We are interested in
What kind of positive experiences are there associated
with the care of children with special needs, and
how might these experiences help parents to adapt successfully?
How do changes over time affect the adaptation of parental
caregivers, and do various positive
experiences help parents to maintain a sense of satisfaction
in their caring role?
We are looking for 150 families of children with special
needs in the NORTH WALES and ADJACENT
areas to participate in our research project. Ideally,
families will be willing to participate in our research now and also agree
to be involved in a follow up data gathering phase in approximately 12
months time. The main benefits of this research relate to improving he
knowledge that we have about families and how they adapt to caring for
children with special needs.
In particular almost nothing is known about parents’
positive experiences and how these might help families cope more effectively.
Also we appreciate that participation in research takes up valuable time.
therefore, we hope that families involved in the research
will feel able to accept payment for participation.
If you are interested in taking part please contact Alexandra
Beck at the
University of Wales Bangor, Bangor,
School of Psychology, Brigantia
Building, LL59 2AS
E-mail :-specialfamilies@bangor.ac.uk
Tel: 01248 388436
In the previous printed issue of the newsletter
we gave the addresses of two web sites which may be of help when filling
in DLA forms. Unfortunately, there was a slight error
in one of the addresses so apologies to anyone who tried to access them
unsuccessfully. (The details and links were correct on the web version)
www.nacc.org.uk/childguide.pdf
‘TWAS THE NIGHT BEFORE
CHRISTMAS
‘Twas the night before Christmas and all through the schools
No students were present to break any rules
The budget was written and each penny spent
With no one quite sure where it all went.
The LEA snuggled all safe in their beds
While visions of budget increases danced in their heads
When all of a sudden there arose such a clatter
They leaped from their beds to see what was the
matter.
Away to the town hall they went in a dash
To see who it was that threatened the cash
And there before them who did appear
With issues they thought finished this year?
There outside the windows and near to them then
Were parents of children they called SEN
We've done this before and we were quite clear
So once again tell us why you are here?
One of them stepped forward and it soon was apparent
That this person before them was one informed parent.
The presentation was prepared with great thought and
care
The Acts were all quoted which caused them to glare.
With a voice loud and clear they were all called by name
These are not new laws and the meaning is plain
The Code of ( Ed ) Practice, the new DDA,
The new SEN Bill, they're all here to stay.
We wish you good tidings great hope and good cheer
The time for inclusion is finally here
Why won't you listen to this our plight
To be included is not privilege but right.
We want them included right from the start
To become part of the whole and not kept apart
We want them included and yes all means all
Don't make them feel different don't make them feel small.
For such a long time the seed has been planted
Why do we still struggle for what to others is granted
No not right now but we'll tell you when
We've heard that same story again and again.
So on this the holiest of nights
We say inclusion is not privilege but right
And on this issue we firmly do stand
The rights of our children we do now demand.
As the meeting concluded ending the night
It was heard.........
MERRY CHRISTMAS TO ALL
AND TO ALL EQUAL RIGHTS
Anon
HAPPY NEW YEAR TO ALL OUR READERS