Newsletter 2008

Transcription

Newsletter 2008

RTS Newsletter Summer 2008.qxp:RTS Newsletter Summer 2008.qxd
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Newsletter
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Summer 2008
In this issue
What is RTS?
Meet the Families
Katie in Florida
All the way from Italy
Ella’s Story
Philip’s Story
Katie’s Visits
All the way from Chile
A Moving Poem from Anon
RTS Events
Sportsman’s Dinner
Golf Day
Special Report from
Professor Chris Oliver
and Team
Over to Dawn
Wills & Trusts
Easyfundraising
Bits & Bobs
www.rtsuk.org
Rubinstein Taybi Syndrome Support Group
Registered Charity No. 1037043
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Contents
What is Rubinstein Taybi Syndrome
1
A Note from the Editor
2
From the Chair
3
Meet a Family – Katie in Florida
5
Meet a Family – All the way from Italy
6
Meet a Family - Ella’s Story
8
Meet a Family - Katie’s Visits to the Theatre
9
Meet a Family - All the way from Chile
10
Meet a Family - Am I an Alien?
11
Meet a Family - Shared Care
12
Weymouth Weekend
14
RTS Events
15
Special Report
20
Fundraising
24
Job Description
25
Scam
26
Wills & Trusts
27
Over to Dawn
32
RTS Merchandising
34
Easyfrundraising & Friends of the RTS Fund
35
Bits & Bobs
36
Useful Contacts
38
Who’s Who in the RTS Support Group
39
And Finally
40
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What is Rubinstein Taybi Syndrome?
What is RTS?
We all walk about talking about RTS, but all of a
sudden we realised that although all our families
and family friends know about RTS and what we
mean when we say “RTS” and “RTS Support
Group”, people and organisations we are sending
this newsletter to in an attempt to raise the
awareness of the
Syndrome, don’t. So
we decided that the
first page of every
newsletter should be
an article actually
explaining what RTS
is and what the
support group is
about.
It is named after the
two doctors - Dr Jack
Rubinstein and Dr Hooshang Taybi - who first
identified the Syndrome in the 1960’s. The
Syndrome was originally known as Broad Thumb
and First Toe Syndrome!
This picture shows Dr Rubinstein and Dr Taybi
with John Peat, RTS Support Group chairman at
the USA RTS Conference.
Rubinstein Taybi Syndrome (RTS) is a collection of
symptoms caused by a chromosomal
(chromosome 16) defect. The main symptoms
are:
1. delayed development milestones
People with RTS also have a greater likelihood of
having certain medical conditions, such as
undescended testes, eye defects and heart
problems. RTS individuals may have problems
with the above but are often endearing and
affectionate.
Since RTS is the result of a chromosomal defect
during the very early stages of life and it is not
known what causes this defect to arise, there is
currently no cure for the condition.
Aims of the RTS Support Group
1. our first aim is always to offer support to
families and carers
2. to bring about public awareness of both the
Syndrome and the Support Group
3. to provide information about the condition
4. to raise funds for the Support Group
How can you help the Support Group?
1. by giving of spare time, skills or talents which
you feel may be of help
2. by donations - by way of money or prizes at
fundraising events
3. by sponsoring our regular newsletter
2. a learning disability of varying degree
3. broad, sometimes angulated, thumbs and
big toes
4. characteristic non-hereditary facial features
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From the Editor
Where have you been? - I can hear you shouting!
I am only going to apologise once and then I will
move on. I am extremely sorry that the newsletter
has been missing. My life was taken over but now I
have got it back! All back on track and you will
receive 2 newsletters a year. That’s it, apology over.
What I would like to point out is that some of the
articles may be a little old, but I have still put them
in as I know you will not want to miss anything that
has happened.
Since I last wrote my article, we have a new addition
to the family. Her name is Grace Elizabeth Aldred
and she is a little darling - well she is at the
moment, but I am sure this will all change as she
gets older! When she comes to visit we start off by
feeding the birds. The neighbours hate this
happening as sometimes Simon brings Grace up to
see us when Beccie is working - which is great, but
means that he arrives with Grace at 7.00am. So
before shoes are off, she says “birdies nan” and out
we go with bread that the lady in the shop has kindly
donated! As we throw the bread for the birds I try
hard to convince Grace that we have to be very quiet
otherwise the birds will fly off and not come back.
And every time she has me fooled. Her little finger
goes up to her lips (Aaah I hear you say ... how
sweet) and just as you think she is going to say
“shhh”, she shouts at the top of her voice, “Come on
birdies, come on birdies, birdies, birdies, come on
birdies”. She looks at me over her shoulder and I
can’t do anything but laugh. By the time she has
finished, all lie ins are over, neighbours’ curtains start
to open and the forced smile as they look out is a
treat to see! We then have a date with the swing
across the road. This is “our time” and we have
some lovely talks about all sorts of things and I have
to say I cherish this time with her. Then we go back
home and she is her normal cheeky self getting up to
all sorts!
I have to say that there are an awful lot of “broken
children’s rides”! I was on babysitting duty and took
Grace out for a few hours to get some food
shopping. We arrived, I parked the car, struggled to
remember how to get her out of the car seat and
eventually we managed to find our way into the
shopping centre. The first thing we were greeted
with was “Noddy’s car”. I was dragged over to see
Noddy and gave in to the “peeeease Nanny”. 20p
went in to the slot and away she went -up and down,
up and down. Screams of delight were heard loud
and clear. Eventually Noddy came to a stop and I
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forgot how hard it was to pry a child from one of
these rides! I pulled, cajouled, made promises that
I just hoped she would forget and eventually I
managed to put her two feet back on the ground!
We set off to have a look at what else was about and
..... yes, you’ve got it! More and more rides only
this time they wanted 50p a go! No way was I
falling for that one. So I came up with, what I
thought was ingeneous, “Sorry Grace, they are
broken”. She seemed to be happy with this reply, so
when we passed the next one and the one following
and I gave the same excuse, she started to beat me
to it! “Broken nan - daddy fix it”, she would say as
we passed yet another one. When we got home, I
told Simon and Beccie the story. They said that
there were more broken rides in Northampton than
anywhere in the country. Even Bob the Builder was
broken!
We had the most fantastic time at the Family
Weekend in Weymouth. As you know the weekend
was the RTS Support Group’s 20th Birthday Party
and party it was. We had a huge cake at the
Saturday evening party. One of the highlights for
me was breakfast with Rory the Tiger! He was just
terrific. But on a more serious note, Dr Hennekam
saw families, Professor Chris Oliver and his team
spoke in depth with families and Frances, the Speech
Therapist, was there for families to talk over their
problems. Families made the most of every minute
talking to other families.
Although nothing is yet set or agreed, we are
definitely having our next family weekend in 2009.
Full details will be sent to you once sorted out.
We also had our Xmas Family Day and once again
this was a real success. Santa made his visit and
gave everyone a present.
Now that we are back up and running, I need your
help. Stories, pictures, information that you feel
would be of benefit or interest to other families are
needed. Please send anything you can through to
me.
Good to be back!
Max
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From the Chair
Hello Everybody!
Hello everyone. I would like to start by referring to
the recent collaboration with Chris Oliver and his
colleagues at Birmingham University. We have had
various people contact the group offering
involvement with studies and researches in the past
and sad to say the group had not benefited from
most of these studies. How nice it is to be involved
with Chris, his approach and professionalism is
refreshing and I am sure that families will find his
research interesting and useful.
There has been a positive development of the group
over the years, from a few parents forming a
committee to now having a constitution, roles and
responsibilities, regional co-ordinators and dedicated
committee members working enthusiastically for
families and carers. Also the fundraising and raising
of awareness and producing the newsletter have
raised the profile of the group.
Hope you all enjoyed the May weekend. This was a
milestone in the duration of the RTS Support Group;
twenty years have passed since the group started
supporting families affected by RTS. The Support
Group has grown considerably since then and we still
have Barbara, Mags and David as part of the group.
For many editions of the newsletter, Mags and Nick
Ruck did a wonderful job in gathering information
and distributing the newsletter to all families.
The
fundraising and donations has now enabled us to
develop the newsletter in a colourful and professional
manner and our thanks go to Maxine and Juliet who
are doing a sterling job with the production and the
content.
I'm sure you'll agree that our successful bid from the
lottery grant was fantastic news for the group. The
grant went a long way to finance the weekend in
Weymouth. We received over £9000 which was very
welcomed indeed. It is not often that we receive a
direct grant so it is nice to be recognised and
rewarded in such a manner. Well done Juliet, the
weekend was nearly paid for!
I think that it is appropriate at this time to pay
tribute to all committee members who have given
their time to the RTS cause, people who were initially
involved at the start and members who came on
board to offer their time and support for the group.
The list is too long to personally name those people
but I would just like to offer thanks to everyone who
has been involved with the group and who helped us
develop and move the group forward in a positive
and professional manner.
Some people only joined us for a short time, while
others have served for a number of years, everyone
is valued and on behalf of the committee, thanks to
everyone out there who has contributed to the RTS
cause.
It is also a time to celebrate just what we have
achieved; we don't often take the time out to reflect
on how far we have come as a support group. The
progress has been made possible by everyone who
has been involved, families, committee members
have all contributed to the progression of the group.
For instance, I am constantly receiving positive
feedback at various fundraising events regarding the
newsletter. People often comment on the content
and production of the newsletter. I also think that it
attracts funding, for instance the group received a
donation from Leeds Utd for over £500 and one of
the reasons was the fact that I had sent a newsletter
previously and to ask Leeds Utd if they would like to
be involved with the golf day, this led to a donation
as well as their involvement with the golf day.
I am proud, as you probably are, to be part of the
RTS group. A group that supports families with
information and family fun days. I can look back
now on when I first became involved with the group,
I wanted to help and support families and make
them welcome when they attend meetings, just like
my family were when we attended our first meeting.
I have made many friends from been part of the
group, the fundraising has also brought me into
contact with many people from all areas of society. I
would personally like to take this opportunity to
thank everyone who has been involved with helping
me on the fundraising side.
I have received tremendous support with the golf
days and more recently the RTS sporting dinner. The
list of people is endless but special thanks go to the
Aldred families, my friends from work and friends
from school, Geoff Burrow and of course people from
the RTS group. Shaun Callighan from the Leeds
Rhinos, John and Lisa from Rawdon Golf and Tennis
Club, who have contributed to the golf day and made
the day so enjoyable.
3
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From the Chair cont’d
Phil Clarke from Sky TV. Wayne Hollywood and his
colleagues at DePuy for their generous donations.
The list is endless and of course to my family, for
their support and encouragement when times have
been difficult, especially the last two years.
Twenty years has seen changes, as probably the
next twenty years will. Whoever is part of the
committee will no doubt keep the group moving
forward and supporting families with information and
promoting the group in a positive and enthusiastic
manner. Also, thanks to the past and present
committees, who have worked hard and supported
me since I became chair, which seems a while ago
now!
For me personally, there have been many highlights
since my initial involvement with the group, the
positive moments far outweigh the negative ones.
The trip to America springs to mind, meeting so
many families, meeting the two doctors who did
such sterling work throughout the years. Speaking
to people from different countries and realising the
work that our support group undertake was an
example to other groups throughout the world.
The ten golf days have been very enjoyable, I will
hold many fond memories from friends, family and
RTS people coming together to enjoy the day and
raising money for the group.
But my fondest memory is making lots of friends
and being party to the group developing and moving
forward. It would not be possible to organise fun
days, raise money and promote the group without
the input from such enthusiastic colleagues who had
served or are still on the committee.
Thanks to everyone who attended the Christmas
Family Day. The group had another presentation
from Chris Oliver and his team. Chris is doing a
good job of updating the group with the findings
from his research. Again we were very lucky in
having such a good venue; the school was new and
had marvellous facilities.
4
Many thanks to all who helped make the day
enjoyable and worthwhile. Special thanks to April
and Max for their hard work in making this another
successful event.
Also I would like to say thanks to committee
members who have left us this year. Juliet, Amanda
and Gio. I would personally like to extend my thanks
for the work that you have all undertaken while being
part of the committee. On behalf of the committee
we hope that you enjoyed your time and involvement
with the group.
Just one more item regarding the
committee, come on you males
out there, we now have a total of
two men on board. Let's address
this in balance and put your name
forward for the committee and
have a voice!
I look forward to seeing you at one of our events.
John Peat.
P.S. On a personal note, Kath and I have become
grandparents again. Baby Mia was born in October
2006 and our Connor loves her to bits, he can't stop
kissing her! John loves Mia but does ask when they
are going home!
30/9/08
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Meet a Family
Katie’s Story
Katie’s Holiday in Florida
We went to Sea World and saw
the Shamu show as well as the
dolphins, penguins, otters and
many more.
Katie is 9 and has RTS and her Mum writes on her
behalf:
On 21st October 2006, I went with my family and
some friends on a brilliant holiday to Florida. We
spent a long time on the aeroplane to get there but
it was ok as I watched dvds for most of the journey.
The staff on the plane were very good to me - they
had a special wheelchair that could fit down the
aisles on the plane to move me around. When I
needed changing, they took me on the chair to a
place where Mummy could lie me down and there
was a curtain across so it was private.
In Florida, we hired a huge bus as there were 8 of
us, the luggage and my wheelchair. We stayed in a
villa with its own pool. Mummy and Daddy had a
bedroom downstairs and so did I and everyone else
slept upstairs - it was perfect for us. The bath was
so big that it was difficult for me to be lifted but we
managed.
I did so much whilst I was there - the local people
were all so kind to me and I could go anywhere in
my wheelchair - there were even rides at the parks
that I could go on in my chair which made it very
easy. I had a special pass so that I didn't have to
queue for the rides - Mummy says I can't really
understand if I have to wait but it didn't matter with
this special system.
I did so many great things but I have just picked
some of my favourites to tell you about:
Magic Kingdom was one of the
best parks as it had so much for
me to do - lots of rides (my
favourite was Dumbo) and all of
the characters were there. As I
like spinning round, the teacups
were another favourite of mine
(not Mummy's though - she looked a funny colour
when we got off!) We saw the park being opened by
Mickey Mouse, Minnie Mouse, Goofy, Pluto and
others. They sprinkle magic dust and sing and the
park is open for the day.
We were there for Halloween too which was a big
occasion - there were street entertainers, all of the
children were dressed up and The Disney Store gave
all of the children a bag to put their candy in - all of
the shops gave you sweets.
The other thing that I really loved
was Discovery Cove, where I swam
with the dolphins. Charlotte and
Joe (my sister and brother) were
with me too - it was magical as
you can see in the photos.
Katie
I saw The Bear in the Big Blue House Show - bear is
huge - just like on the TV.
The parades in all of the parks were
great and there were special places
for us to wait so that I could see many of the characters stopped to
talk to me - I loved them all but
especially Winnie the Pooh and
Tigger.
5
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Meet a Family
Francesco’s Story
All the way from Lake Garda, Italy!
I'd like to introduce you to the Dell'Oro family. I'm
Janet and have been living in the north of Italy for
over 20 years - hence the Italian surname! My
husband is Riccardo and we have three children.
Francesco is nearly 15 and has RTS, Olga is 13 and
Alex (the after thought!) is 5. We live near Brescia,
not far from Lake Garda.
When I started to think about what to put in this
article I realised that there were so many things I
could say about Francesco and how life has been
since his birth that I could write a book!
The most important thing is that he's a happy, caring
person who is loved by everyone. I don't think
anybody could meet Francesco and not be won over
by him.
People in Italy love children and make a lot of fuss
over them. When they were younger Olga drew lots
of attention (being blonde she's quite a novelty) but
Francesco's charming smile soon had people looking
at him as well. He's nearly always happy, with a
ready smile and loves to have a laugh - he can be
quite a comic at times. We were fortunate to have
Francesco's condition diagnosed almost immediately
after his birth and I think that from a medical point
of view he's been really well cared for. The Italian
health service where we live works well and
efficiently and we've reaped the benefits of this.
Having said this Francesco hasn't had any major
health problems.
There are no special schools in Italy anymore.
Francesco started nursery school when he was 3 and
did four rather than the usual three years there.
Then he moved on to elementary school and as we
live in a village he was in the same class as Olga.
Now he's about to finish the first part of secondary
education and in September will move on to high
school. I feel that in Francesco's case it's been a real
bonus for him being in mainstream education. We've
been lucky in that his special needs teachers and
personal assistants have always been lovely people
who've taken Francesco's education and well being
to heart and have helped him to make enormous
progress. His speech is not bad but sometimes
unclear, he can read and write simple things and he's
6
quite an expert with the computer, even surfing the
net to find out more about his favourite cartoon
characters!
I'm also convinced that having Francesco in their
class is of great benefit to the other children. I'd
even say that they're lucky to have him with them. I
think it helps them to accept other people's
differences, to be more tolerant and appreciate their
own abilities and makes them aware that nobody is
perfect, we all have our failings.
High school is going to be a new adventure for us
but I'm confident that it will be as positive an
experience as the rest of his schooling has been.
I've just started thinking seriously about Francesco's
future, what that holds for him and what we can do
to make it as serene as possible - quite daunting but
something which needs to be faced. I attended the
weekend in May and managed to pick a few brains!
Of course it was a terrible shock when Francesco
was born and there have been difficult and worrying
moments and doubtless there will be more to come
but I really want to convey the great joy that
Francesco has brought to our and to many other
people's lives. In Italy they often compare life and
how you live it to a bottle - of wine, of course! - you
either see it as half empty or half full. I really feel
that out bottle is more than half full.
Janet
30/9/08
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Francesco’s Story
A Letter from Francesco
LETTER (direct from Francesco!)
Francesco’s Story
HELLO! MY NAME IS FRANCESCO DELL'ORO. I'M THIRTEEN YEARS OLD.
MY BIRTHDAY IS IN APRIL, ON THE 23RD. I LIVE IN CASTENEDOLO, ITALY. I
HAVE A SISTER AND A BROTHER: MY SISTER'S NAME IS OLGA AND MY
BROTHER'S NAME IS ALEXANDER.
I LIKE VERY MUCH USING THE COMPUTER: TO WRITE, TO LOOK AT THE
IMAGES, TO PLAY VIDEOGAMES, TO SURF ON THE INTERNET.
ON THE INTERNET I LOOK FOR MY FAVOURITE CHARACTERS:
SPONGEBOB, HARRY POTTER, THE ANIMOTOSI…
MY FAVOURITE SUBJECT IS ENGLISH.
I LIKE LISTENING TO MUSIC AND MY FAVOURITE SINGER IS
RAMAZZOTTI.
I ALSO LIKE VERY MUCH HORSES
FRANCESCO
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30/9/08
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Meet a Family
Ella’s
Story
The McCleods
Gary’s Story
In the first term last year I started horseriding
lessons with my school, which was fab and I
really enjoyed it. It only lasted for the first term
which just wasn't long enough, so when Dad
asked me if I wanted horseriding lessons for my
Christmas present I was so excited and jumped
at the chance to be able to ride a pony again.
other side and nearly mounted and dis-mounted all in
one go. Dad and Juliet were there to help me and
Phil kept hold of my leg so I didn't fall off completely.
I thought is was great and very funny and it gave us
all something to talk about afterwards. My first lesson
was fab and I really enjoyed it, I had a helper called
Rhiannon who walked with me and held Blue's bridle
and who I just had to talk to as the lesson went on,
she was really nice! In this lesson, I learnt how to
hold the reins properly, where my feet should be in
the stirrups, which position my legs should be in and
also how to do rising trots. The rising trots were hard
work and I think it will take me a time to get the
hang of these! The lesson went really quickly and I
can't wait for my next one.
Ella’s First Horseriding
Lesson
For Christmas my Dad and Juliet bought me
horseriding lessons at a near by riding school
called Markfield Equestrian Centre, which is not
far from where we live. Also for Christmas, I had
jodhpurs, riding boots and gloves to wear for my
lessons. I was so excited and I couldn't wait for
when I went to stay with Dad and Juliet in the
New Year so I could go to my first proper
horseriding lesson.
When the day came, I went to bed early the
night before because it was an early start and I
couldn't wait for this day to come, I was so
excited! Juliet woke me up early in the morning
because my lesson started at 9am and I jumped
out of bed and couldn't wait to get dressed and
wear my new clothes and boots.
When we got to the riding school we paid for my
lesson and they told me which pony I would be
riding. My pony was called 'Blue' and he is a
grey pony, which is just great because grey is
my favourite colour for a pony. I chose which hat
I wanted to wear and Dad made sure that it
fitted properly. We went to meet my pony with
all of the other children who were also in the
lesson. I also met my instructor, Phil, who was
really nice and friendly.
Phil helped me to get onto Blue for the first time
and I did something, which was really funny! We
didn't use a mounting block the first time and
Phil gave me a leg up onto Blue. He pushed me
so hard onto Blue that I went straight over the
8
Hope you like these photos that my Dad took of me!
Ella Crowe
(Aged 12)
Katie’ Story
Jack and the Beanstalk
30/9/08
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Chitty Chitty Bang Bang
9
30/9/08
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Meet a Family
Rosemarie’s Story
All the way from Chile!
HELLO,
MY NAME IS ROSEMARIE. I AM FROM CHILE, SO
FOR ME COULD BE EASY TO WRITE OUR HISTORY IN
SPANISH, BUT I THINK IS BETTER FOR EVERYBODY
IN ENgISH
WELL ..OUR HISTORY BEgANS.. IN THE 27 OF
OCTOBER OF 2000. WE WERE ALMOST MARRIED 2
YEARS AND WE HAD OUR PRETTY SON. HE WAS
BORN AND NOBODY NOTICED ANYTHINg WRONg.,
BUT AFTER WE WENT HOME HE STARTED TO HAVE
REFLUX AND SOME PROBLEMS WITH A LITTLE
CONJUNTIVITIS.
OUR PEDIATRICIAN DOESNT NOTICED ANYTHINg
WRONg, BUT HIS DEVELOPMENT WAS VERY POOR.
WE ASKED FOR HELP..WE WERE VERY CONFUSED,
NOBODY SAID TO MANY THINgS TO DO..
AFTER HE WAS 1 YEAR ,I WAS WAINTINg ANOTHER
BABY.. SO WE BROUgHT HIM TO HIS DOCTOR TO
CHECK HIS EASE AND OUR DOCTOR NOTICED SOME
VERY PECULIAR THINg IN HIS HANDS AND BROWN
EASE. FINALLY HE DISCOVERED THAT OUR LOVELY
SON HAS RUBINSTEIN TAYBI.
WE MADE THE FISH CROMOSOMES TEST IN THE
USA,BUT THE DIAgNOSTIC WAS NEgATIVE. WE
WERE MORE CONFUSED, BUT THE DOCTORS TOLD US
THAT WE WILL HAVE TO TAKE THE RTS DIAgNOSTIC
LIKE A CLINICAL DIAgNOSE. WELL.
WE START TO HELP HIM WITH SPEACH THERAPY
AND WE MOVED TO CHILE, SO WE FOUND MORE
THINgS TO WORK TOgETHER WITH OUR FAMILY.
AFTER LOOKINC FOR ALL PLACES TO HELP US, WE
FOUND A SPECIAL CENTER .”.ALTAVIDA”..THERE IS A
SMALL PLACE WHERE THEY PROFESSIONALS WORKS
WITH SPECIAL TEACHERS. THAT PLACE WAS AND
STILL IS, THE MIRACLE FOR MY BEAUTIFUL SON.
IS VERY DIFFICULT FOR ME TO EXPLAIN IN ALL THE
WORDS WHAT THAT IT COST FOR US TO HELP HIM
AND TO HELP US TO BE HAPPY, BECAUSE HE WAS
ALWAYS MORE THAN HAPPY WORKINg WITH US. BUT
10
WE NEEDED MORE INFORMATION TO FEEL THAT WE
WERE DOINg RIgHTEOUSLY.
I STARTED TO gO TO THE UNIVERSITY ALSO, TO
LEARNED MORE ABOUT SPECIAL CHILDRENS AND
DIFFERETS WAYS TO HELP THEM.. WAS VERY NICE
FOR ME TO FINISHED ALL MY STUDIES AND TO BE
MORE RELIEFE OF ALL MY PAINS… I WAS FEELINC
VERY BAD IN THE PAST , BECAUSE OF THIS WALL
BETWEEN ME AND THE RTS SINDROME.
FELIPE IS MORE THAN AN ANgEL.. HE IS ALWAYS A
HAPPY CHILD, AND HE LOVES TO TOUCH, TO STAY
IN TOUCH, TO BE THE CENTER OF THE SITUATION.
HE FINALLY LEARNED TO GO BY HIMSELF TO THE
BATHROOM. HE TALK A LITTLE WORDS, BUT HE
WORKS WITH US WITH SIgNS , CREATED BY
HIMSELF, SO HE IS ALWAYS TRYINg TO COMUNICATE
THEIR FEELINgS.
HE IS VERY SENSITIVE, AND HE DOESNT LIKE TO
SEE PEOPLE IN A BAD MOOD WAY. HE LOVES OUR
FAMILY, AND SPECIALLY HIS FATHER, THE STRONg
PART OF ME. MY CENTER.
FELIPE HAS A SISTER, HERE NAME IS ALESSANDRA,
HE IS 6 YEARS OLD, SHE IS 5 YEARS OLD.. SHE
DOESNT HAVE RTS..SO SHE PLAYS WITH HIM LIKE
A NORMAL CHILD. SHE HAS A LOT OF INgENUITY
AND HE LOVES HER VERY MUCH FOR ALL THATS
COMPLEMENTS.
THEY BOTH gOES TO A DIFFERENT SCHOOL, BUT
THEY LOVE TO STAY TOgETHER AFTER CLASS,
PLAYINg , WATCHINg TV, IN THE gARDEN, IN THE
CAR, LOVES TO DANCE WITH THE GRANDMOTHER,
LOVES TO PLAY WITH WORDS AND ASK FOR
QUESTIONS IN THE COMPUTER. HE JUST LEARNED
ALL THE LETTERS, HE LOVES LECTIONS AND
LECTURE.
HE IS THE MOST LOVELY CHILD IN OUR FAMILY,
RECEIVINg TENDERNESS OF UNCLES, FRIENDS AND
HER NANY ROSE.
Rosemarie’s Story cont’d
I NOW THAT FOR US IS THE BEgINNINg ,
THANK gOD TO HAVE HIM IN OUR LIFES.
BUT WE
FELIPE IS THE MOST IMPORTANT THINg IN THE
WORLD FOR ME, TOgETHER WITH THE REST OF MY
FAMILY AND I WILL LIKE TO gET ALL THE WAYS
TO CONTINUE HELPINg HIM, ALWAYS.
NOW IS THE TIME TO HAVE ANOTHER CHILD, I
HOPE gOD CAN gIVE ME THIS PRESENT.. I HOPE,
BECAUSE WE THINK THAT COULD BE BETTER FOR
OUR CHILDS TO HAVE ANOTHER SISTER OR
ANOTHER BROTHER.
THANKS FOR ALL THE INFORMATION, AND PLEASE
CONTINUE HELPINg US .
ROSEMARIE DELTA
IÑA DEL MAR-CHILE
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From Anon
AM I AN ALIEN?
I get stared at all the time
and people call me names
everywhere I go of late
it is all the same
Am I a alien from outer space
or is it because I got a different face
Am I a side show
am I a freak
how do people think I speak
So why don’t people pass the time
to say good morning that would be fine
to say Hello that would do
Or do you think I’ll take a bite out of you
So look careful before you speak
am I such a awful freak
I got ten fingers
and ten toes
but then you never know
I might have a rocket waiting for me
but then you just have to wait and see
Signing off from Outer Space
(This poem was sent in to me by a lady with RTS who
wishes to remain anonymous. The transcription is
exactly as written).
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Meet a family
Shared
Care
The McCleods
By Mags and Nick Ruck
Does it occasionally cross your mind 'what will
happen to your RTS son or daughter in the future
when you are no longer able to care for them at
home, either due to circumstances or because you
are getting older yourselves and maybe just can't
cope any longer'.
It is something we had thought about -fleetingly
over the years, but always thinking 'not yet, we are
definitely not ready for Philip to leave home yet'.
When he left school at 19 years old he went to a
Day Centre, at the time this seemed to be the best
option, he coped well and appeared to enjoy going.
Gradually over the next 4-5 years he became
increasingly bored, not willing to join in with the
groups of 10-15 others with learning difficulties and
would wander off causing disruption. Eventually the
staff there said that they could no longer meet
Philip's need and that the Day Centre was not the
right environment for him.
Community based day care was set up for him, he
had a wonderful time, doing all the things that he
enjoyed, ten pin bowling, swimming, playing
snooker, football, rugby, going to the cinema, arts
and crafts, drama therapy, visits to funfairs, the sea
side and trips on the train. Life for him was one
long holiday.
This worked extremely well until he became quite
seriously ill, with pneumonia and empyema, while on
an outing to Weston Super Mare. The day care staff
took him straight to hospital and I met them there.
Philip was in hospital for 3 weeks and coped
remarkably well with all the treatment and eventual
surgery.
Once he had fully recovered physically we thought
that he would soon get back into the routine of
getting out and about - wrong. It became
increasingly difficult to get him to even leave the
house and once he was out he refused to get out of
the car doing everything within his power to be
brought back home again. It was the same at
respite care and they said that they just could not
cope with him (by this time I knew that feeling too).
This situation continued for over a year and we were
seriously considering whether we could continue to
12
look after Philip at home.
The social worker tried everything to find alternative
day care and respite and was very supportive.
Eventually she referred Philip to the 'out reach
team'. This consisted of a psychologist and a
challenging behaviour worker. They visited us
regularly chatting to and observing Philip, within the
first couple of meetings they thought that his
problems were all to do with being taken to hospital
while out on a day trip with the day care service.
His anxiety levels went sky high whenever he left the
house so he displayed extremely challenging
behaviour just so that he would be brought back
home, where he felt safe and in control, (which is
exactly what had been happening).
The challenging behaviour worker spent a lot of time
with Philip, building up his confidence levels, until
eventually he would go out with her quite readily
(usually to MacDonalds) just for a couple of hours,
but he was still not happy to go out with the day
care team.
Around about the same time a new residential home
(Fern Croft) opened in Gloucester, approximately 25
miles from our home on the outskirts of Bristol. The
social worker knew of it having placed another of her
clients there, she asked them if they could provide
respite care. Apparently when a home is registered
they have to state if they are allocating respite care
beds and this home had not, but they were happy to
offer shared care. This is exactly what it was;
Philip's care is shared between Fern Croft and us.
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Shared Care Cont’d
What a lifesaver this proved to be. I went to have a
look round with Philip and the social worker and was
really impressed, very homely but done to a high
standard.
The challenging behaviour worker took Philip to Fern
Croft for a few hours, every Saturday over the next
few weeks; he got used to the building, staff and the
two other young ladies that live there.To begin with
we thought that he could perhaps go there for the
odd weekend, he had a bedroom allocated just for
him, so was able to have his own TV, video player,
music centre, video tapes, music CD's and clothes so
that it soon became familiar to him. The staff at
Fern Croft are brilliant, very experienced,
understanding and caring and offered to provide day
care as well as overnight stays.
This worked out so well, he was collected from home
between 9am -9:30am and brought back between
5pm -6pm each day, staying there every weekend.
Philip was able to do all the things he enjoyed, this
could be staying in and watching videos, cooking or
going ten pin bowling and visiting places that he was
interested in.
It was quite remarkable to us how well he adapted
to his new routine, happy to leave each morning,
returning in time for tea and he did not complain
about staying at Fern Croft at the weekend. When a
year later a much larger home opened called Fern
Court. It is a lovely large house set in 2 acres of
land, we decided that it would meet Philip's needs
even more and Philip was one of the first to move in.
They now have 6 other residents that he gets on well
with.
We are hoping to continue in the same way for the
next 5 or so years. Eventually it will be his long
term home, for us to see him happy, content and
feeling safe and secure is a tremendous relief.
There were a few settling in problems in the first few
weeks but the staff dealt with each situation very
ably and Philip soon realised that he would not be
brought home whatever he did so it did not take him
long to calm down and relax.
Nick and I are enjoying far more freedom. After 30
years of always having to consider what would be
suitable for Philip (which has been very limiting) we
are thoroughly enjoying being able to go shopping or
for a meal. I have been able to visit my elderly
mother more often (she lives 130 miles away), even
just being able to have a chat without interruption
was something new for us.
We don't know if Shared Care is available in other
areas of the country within a residential home
setting but to us it seems the perfect way to prepare
any RTS son or daughter for their long-term future.
Philip now has 2 homes with people who love him
very much iIn both.
Mags and Nick Ruck
Philip is picked up on a Monday morning and stays at
Fern Court until Friday lunchtime when he is brought
home to spend the weekend at home. If we wish to
have a weekend away then he stays longer (which
he is not so happy about).
13
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RTS Events
Family Weekend at Weymouth
What a weekend it was!
We set up our registration table at Haven on the
Friday afternoon and it was fantastic as always to
see the families arrive. The children were all
excited with thoughts of what they were going to
get up to over the weekend! Keys in hand and
weekend instructions clutched, our families went off
to find their home for the next couple of days. The
caravans were fabulous and I am so pleased to say
- nothing whatsoever like Fleetwood!
Friday night was a leisurely evening, chatting
contentedly with families and sharing a joke or two!
Saturday morning started early for the committee,
setting up, making sure the most important element
of the weekend was set up in good time - the tea
and coffee station! At 10.00am the families started
to arrive and the day’s activities began. Dr
Hennekam and Professor Chris Oliver and his team
were on hand and gave presentations. Further on
in this newsletter you will see the presentation given
on Challenging Behaviour. The day flew by, families
were very busy with Dr Hennekam, Chris Oliver and
the Speech Therapist. It was then time for all to
get back to their caravans, change and get back for
the RTS Support Group 20th Birthday Party. The
committee did everyone proud - the room looked
fabulous - blue and gold balloons (I do seem to
remember being on the balloon production line run
by Gill Hart (please don’t tell her .... but she is a
right task master!). Following dinner John Peat
gave a speech and I have to say I think everyone in
the room was a little emotional. And things got
even worse when Barbara Baron and Mags Ruck
were presented with flowers! But relief .... out
came the cake! The disco started and we were all
off dancing to all the usual records - well what else
could we have? How could you possibly have a
party without YMCA, Birdy Song - the list goes on!
We had a super time and then it was time for bed.
On Sunday morning we had arranged a treat for the
children (and me!), breakfast with Rory the Tiger.
Rory was on fine form and we were presented with
a great picture of all with Rory (just before the heat
got to him and he fainted!).
14
Breakfast over, it was time to prepare the room for
the AGM and raffle.
The AGM was very constructive and from there Peter
Burrows was welcomed onto the committee.
I will just remind everyone at this point, if you feel
that you could bring ideas and support to the group,
why not join us on the committee?
Following the Prize Draw, tombola and on the day
raffle, it was time for lunch. With the formalities
over families were off sightseeing or off back home
ready for work on the Monday morning.
Weymouth is a fabulous holiday resort, I could sit
for hours watching the boats coming and going in
the harbour. The sandy beach is full of families
trying to win the biggest sand castle competition.
Many of the families have since gone back to
Weymouth which I think proves my point!.
Roll on 2009 - where will we be next?
Maxine
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RTS Events
Golf days
Fore - all duck!
Friday the 3rd of August saw the tenth RTS Golf day take
place at South Leeds Golf Club. Mr David Smith, a big
supporter of the R.T.S. Golf Day, volunteered his services and
managed to persuade the management committee at his golf
club South Leeds, to allow us to hold the event there.
Again the event was blessed with good weather and the
course was in magnificent condition, the greens were a credit
to the ground staff. The eventual winner was Carl Pitchford,
son of Steve, the former Leeds and Gt. Britain rugby League
player. Carl played very well indeed. The winner of the
nearest pin was my friend Bob Friend, who came in with a
late challenge after it looked like David Smith would be the
winner.
We had a record number of competitors this year and just
over two thousand
pounds was raised on
the day. Wayne
Hollywood and his
colleagues at De Puy,
donated over six
hundred pounds. Rob
Burrow and Danny
McGuire from the Leeds
Rhinos participated in
the event and presented the
prizes afterwards. Many thanks to them and to everyone who
competed and donated things on the day.
The day is not about prizes, it's about raising money and
having a good time. We are still raising money and everyone
seems to be enjoying it, so let's give it another go!
Also let’s have more people from the group playing, it would
be nice to see people donating to the event and participating
on the day.
I would like to thank my family; they have supported me and
contributed every year. Kath has bought me things for prizes
and the auction, my brother and his wife have donated the
fruit and of course my Mum and Dad are there to collect the
money, help with the auction, sell raffle tickets etc. Many
thanks to you all.
John
I had the pleasure (dubious) of playing with Roy Aldred and
Roy played very well and kept me thoroughly entertained. It
was the first time in two years that I had managed to
complete eighteen holes, so hope I did not hold everyone up!
I was going to stop organising the golf day; it's getting harder
each year to gather auction prizes. However, after much
consideration and there is still a tremendous interest from all
the competitors, decided to go ahead with it a little longer!
15
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RTS Events
Sportman’s Dinner
Are they still standing?
The Sportsman dinner was
another great success.
This was held on the 20th
January at Headingley
Stadium. It was a wet
and windy night when my
Dad and me and two
neighbours set off in the
taxi and arrived at
Headingley around 6-45.
We were greeted at the
door by one of the
directors, Shaun Callighan
and his team.
I then went into the bar
and said hello to the early
arrivers before making my
way upstairs to have a look at the table layout and to
introduce myself to the M.C. for the night, Mr Barry York. I
then made my way to the Directors' Suite where a friend of
mine, Geoff Burrow and his G.M.B. colleagues had paid for a
private room prior to the dinner. I thanked them for their
generous contribution.
We had some photographs taken before I made my way
back downstairs to greet the other guests. It was good to
see so many people from my school days, ex-work
colleagues, people from the golf club, friends and relatives.
Again we had about twenty former players from the rugby
league world and current international Rob Burrow and ExGreat Britain player Barrie McDermott. The M.C. this year
was Barry York who led the evening's event as well as
providing most of the humour. The above mentioned were
joined on the top table by John Boyd, formerly from Radio
Leeds and Roy Dickinson, last year's speaker.
The Leeds Club again supported the dinner with a signed
shirt and ball from this season and tickets and a meal at one
of the games but the most treasured item was a millennium
16
shirt from 1999 at Wembley with signatures from players
both past and present.
We had a nice dinner with wine and played the silly stand up
bingo game. Barrie McDermott's speech was first class with
tales from his playing days and the battles he had with the
Aussies. Also he explained about all the times he was
dismissed from the field or ordered to appear at the Rugby
League headquarters to explain his latest brush with the
authorities. Of course Barrie said that on most of the
occasions it was a case of mistaken identity!
Barrie was not only funny but his passion for rugby league
came over loud and strong. He has served the Leeds Club
for over ten years and was now employed as a community
worker and match host in the players' bar. Barrie is held in
high regard, especially at the Leeds Club, he is now a role
model for younger players coming through the system and
testament to what hard work and dedication can bring.
Barrie has worked hard at his trade, there has been difficult
times throughout his career but Barrie has overcome
adversity and rose to the top of his profession. Also he has
experienced the hard times prior to the players in Super
League becoming full time professionals. Barrie worked on a
building site throughout the day and then trained in the
evenings before playing at the weekend, so Barrie has seen
both sides of the life in Rugby League.
A big thank you to everyone who attended and contributed to
the event. Barrie McDermott for his contribution and very
good speech. Barry York for his control of the night's
proceedings. The Leeds Club, Shaun Callighan and his staff,
former and present players, our guest on the night, my
friends Geoff and Rob Burrow and John Holmes. Thanks
also to the committee for their support.
John
13
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And what a
night it was!
17
RTS Events
Xmas Pictures
18
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Meet a family
19
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Centre for Neurodevelopmental Disorders
School of Psychology
University of Birmingham, UK
Challenging Behaviour Research
Children and adults with Rubinstein-Taybi Syndrome:
A research update
In almost every way a person who has a genetic syndrome
is just the same as everyone else, with the same needs,
wants, and rights. However, in some ways a person who
has a genetic syndrome will differ from people who do not
have that syndrome. Similarities and differences are
equally important when thinking about a person's
wellbeing and how best to help people realise their full
potential.
This information about similarities and
differences helps to guide education, treatment,
assessment and early intervention strategies for people
with Rubinstein-Taybi Syndrome (RTS). This is one of the
main reasons why our team of psychologists, at the Centre
for Neurodevelopmental Disorders, is interested in the link
between specific behaviours and a genetic syndrome.
In this article we will bring you up-to-date with the news
and developments concerning RTS at the Centre for
Neurodevelopmental Disorders and we outline our future
plans.
Survey Results 2006
Last year we conducted a survey with you (the parents and
caregivers of people with RTS) and we also interviewed
around 15 to 20 parents at the summer RTS meeting. The
purpose of the survey and interviews was to gather
information about RTS from people who have first hand
experience of the syndrome. We had a fantastic response
to the survey and received 104 responses (59 males & 45
females with RTS ranging from 1 to 49 years of age).
Thank you! From the interviews we identified some key
areas that you felt we should research. More on this later.
Results on development of
speech and mobility
Figure 1 below shows the percentage of people in the
survey who had developed speech and were mobile.
Figures 2 and 3 show the percentage of people who had
acquired given levels of self-help skills.
Speech & Mobility
Self Help Skills
Figure 2: The percentage of people who were able,
partially able or unable to dress, wash themselves
(self help skills).
Encopresis
Figure 3: The percentage of people who were
‘frequently’ wetting and soiling themselves across three
age bands. Wetting/soiling drops rapidly during the
teenage years.
Your observations - a starting point for us
As parents and carergivers, nobody knows the people
you care for as well as you do. Your observations and
feedback have provided a starting point for future
research into the behavioural challenges in children and
adults with RTS. In particular, you told us about:
* Problem behaviours such as self-injury and hitting out
* Excessive (or preserved) sociability.
* Overactivity and impulsivity (can’t wait!!!!)
* Autistic-like behaviours (unusual communication and
social interactions, and repetitive, compulsive or
ritualistic behaviours
* General mood and that people with RTS seemed to
have a positive mood more often than not.
20
Figure 1: The percentage of people who were verbal
and who could walk unaided across three age bands.
Speech development is delayed for many people with
RTS.
30/9/08
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Page a24
You reported that of people with RTS:
30.1% display self-injurious behaviour
*
54.5% display aggression
*
40.8% physically damage property or the environment
In the rest of this article we will give you some feedback on
self-injury and aggression and explain some of the new
research avenues that we are taking to explore social
interactions and repetitive behaviours.
2..
Understandably, witnessing self-injurious or other
challenging behaviours causes a great deal of distress to
parents and caregivers and has a signficant impact on the
quality of life for all concerned.
However, the most
important thing to remember about self-injury and other
challenging behaviours is that they are not inevitable. The
right sort of assessment and invention may reduce them.
To work out if this is the case, ask yourself these questions:
Self Injurious & Challenging
Behaviour
The most important thing to do is keep an open mind about
the possible causes of self-injury and challenging behaviour
and then to systematically address each cause.
What are the causes of self-injury and challenging
behaviour?
1.
Pain and discomfort
The research of Angelo Selicorni and his colleagues in Milan
has confirmed the clinical observation of many
professionals that gastro-oesophageal reflux is associated
with self-injury and challenging behaviour in a syndrome
called Cornelia de Lange. The evidence is mounting that
self-injury and challenging behaviour decrease when reflux
is treated and we have recently found that self-injury is
significantly associated with reflux related behaviours such
as: back arching, excessive drinking in the morning, teethgrinding, touching the mouth, throat and chest area,
sleeping sitting up, excessive drooling, and an inability to
sit still.
Figure 4: Middle Ear Infection
Another common cause of pain in people with learning
disabilities is middle ear infections (figure 4). Ear hitting,
head banging, and hair pulling are some of the ways that
people with RTS may respond to the pain.
A learned behaviour
Self-injury and challenging behaviours can be learned
behaviours. For example, the person may hurt themselves
because doing this makes something happen that the
person likes. Often the thing that happens is that the
person gets a response from someone with whom they
would like to spend time.
* Does the behaviour get a response from an adult?
* Does the behaviour attract your attention?
* Does the behaviour
'reprimand'?
annoy
you
and
make
you
* Does the person behave in this manner so that you will
come and talk or play a game with them?
* Does the person engage in the behaviour when you are
talking to someone else in the room?
Another common cause of self-injury and challenging
behaviour is that a person wants something to stop or go
away (e.g. task/chore or an overwhelming social situation).
To assess whether self-injury or challenging behaviour has
been learned you can keep charts that will show you
whether there is a pattern to something in the environment
triggering the behaviour.
Five important things to know about
intervening for behaviours maintained by
attention.
* Modify your response behaviour. If you must
respond, to protect and restrict, be ‘cool’, no
speech, no eye contact, no fun!
* Present positive and fun attention when the
behaviour is not occurring. Set a timer to
remind you.
* Find or teach a communicative response that
can get attention from you and others. Make
sure everyone responds to it.
* Increase independence to give control to the
person and reduce their reliance on your
attention.
* Make sure everyone is doing the same thing.
However, if the behaviour is occurring more than ten times a
day a more structured assessment is required. The most
commonly used method is called experimental functional
analysis (also known as analogue conditions). This needs to
be conducted by an applied behaviour analyst or clinical
psychologist and involves changing levels of social contact
and tasks to see if the self-injury is associated witha lower or
higher level of attention or the presense of a task.
21
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Special Report
A New Team of Researchers
We have recently expanded our work at the Centre for
Neurdevelopmental Disorders at the University of
Birmingham and we have a new team of five
psychologists whose specific goal is to look at
sociability and repetitive behaviours in children and
adults with RTS and some other syndromes. Those of
you who were able to attend the RTS Christmas family
get together will already be familiar with our new PhD
students, Laurie Powis and Jane Appleby, who will be
working with you over the next three years. Our new
team is particularly specialised because Jane and
Laurie are being supervised by Professor Chris Oliver
and two experts in Developmental Psychology
associated with the Centre, Dr. Ian Apperley and Dr.
Sarah Beck. The team also works in collaboration with
Prof. Raoul Hennekam at Great Ormond Street
Hospital.
We would like to thank all the parents/carers and
people with RTS who have already volunteered to be
part of our research over the next three years. If you
want more information about this project and think
someone you know with RTS might want to take part
then you can contact Prof. Chris Oliver, Jane or Laurie
(See Box 3 for details).
Are people with RTS very
sociable?
Over the next three years Laurie Powis (figure 5) will
focus her research specifically on the social
behaviours shown by people with RTS. People with
RTS are often described by their carers as happy,
loving, caring and easy to get on with. Indeed, this
sociable, even overfriendly, temperament with a love
for adult attention and a reduced fear of strangers has
been noted in the research literature and it can be a
problem. Therefore, it seems important to find out if
people with RTS demonstrate heightened sociability
and, if so, why.
Our recent analysis of change in sociability over time
(figure 6) confirms that people with RTS are highly
sociable. However the results suggest that people
with RTS become less sociable as they get older. This
pattern of sociability is particularly interesting and
may indicate an important developmental change in
the way people with RTS think and feel about their
relationhips with other people as they age.
A growing body of research has highlighted the
possibility that central to social activities may be our
ability to infer the mental states (beliefs, desires,
feelings and intentions) of others. This ability to
interpret other people’s intentions has been
implicated as essential for good social understanding
and the ability to empathise with others (“I know
how you feel”). Laurie plans to use various tasks to
explore how well people with RTS infer these mental
states and how this may relate to patterns of
sociability.Examples of the types of task Laurie may
use are detailed in boxes 1 & 2.
THE DECEPTIVE BOX TASK
BOX 1
We will show the person with RTS a clearly identifiable
Smarties box. Unknown to them, the Smarties box
contains pencils. We will say, “Here’s a Smarties box.
What do you think is inside the Smarties box?” Next,
we will open the Smarties box and say, “Let’s see ...
it’s really pencils inside”.
Then we will produce a toy figure of a boy and say,
“Peter has never seen inside this Smarties box. Now
here comes Peter”. We will ask the person with RTS
two questions:
“So what will Peter think is in the box? Smarties or
Pencils?” (target question)
“Did Peter see inside the box?” (memory question)
Children with Autistic Spectrum disorder find it difficult
to understand that Peter has different knowledge
about the situation to themselves and will be more
likely to answer that Peter will think pencils (rather
than Smarties) are in the Smarties box.
Children with good theory of the mind skills
understand that Peter will think Smarties are in the
Smarties box.
**
Figure 6: Sociability scores for a range of syndrome groups (AS:
Angelman Syndrome; CdCS: Cri du Chat Syndrome; CdLS:
Cornelia de Lange Syndrome; FXS: Fragile X Syndrome; DS:
Downs Syndrome; RTS: Rubinstein Taybi Syndrome) across three
age bands.
22
Identifying the specific social behaviours of people
with RTS and how they might be different will help
us understand how people with RTS see other
people and ‘read’ social situations.
** We also have versions of our tasks suitable for:
Adults: (no childish content!)
Non-verbal individuals!
All levels of ability
Everyone can take part!
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CO-OPERATION TASKS
Co-operation tasks require the person with RTS and the researcher to share a
goal. In order to succeed on the task the person with RTS must understand the
intentions of the researcher and incorporate them into their own intention.
For example, in the TUBES WITH HANDLES TASK the person with RTS and
the researcher must work together to retrieve a toy that is inside a tube. The
tube will have a handle on each end and can only be opened by two persons
simultaneously pulling at each end. The length of the tube will make it
impossible for a person with RTS to grasp both handles at the same time.
BOX 2
Repetitive Behaviours in people
with RTS
Jane Appleby (figure 5) is hoping to look at repetitive
behaviours in people with RTS. These behaviours
include stereotyped behaviours (hand flapping,
spinning objects), repetitive speech, compulsive
behaviours (behaviours that must be done), and
insistence on the same routine and restricted
interests (see figure 7).
Jane is eager to address the possibility that these
behaviours present themselves because of a problem
with executive function in people with RTS.
'Executive function' is an umbrella term that
encompasses a wide range of mental processes,
including: holding things in your memory, monitoring
ongoing
behaviours,
supressing
unwanted
behaviours that have been previously learned, and
switching your attention from a current task to a new
task. All these mental processes are needed for
forward planning and flexible problem solving.
It helps to imagine executive function as the
manager of the brain organising the different mental
processes so that a particular task can be completed.
The manager organises these mental processes so
that they work in the most effective way. However,
if this manager cannot do their job properly the
mental processes will not be directed in the most
effective way.
Figure 7: the repetitive behaviours seen in people with RTS.
Adherence to routine and repetitive questioning are particularly
prominent.
For example, if the manager is not telling the
brain to stop a behaviour once it has been
started, in order to start another one, the
person may keep repeating the same
behaviour over and over again. Or if the
manager is not directing attention away from
one task towards a new task the person may
become extremely distressed when their
routine changes.
Jane is planning to use tasks of executive
function that will be fun for people to do and
that will engage their attention. One task she
may use with children with RTS is the
bear/dragon game.
This is an extremely
popular and engaging version of the game
Simon Says.
In the bear/dragon game the person will be
introduced to a
‘nice’ bear puppet
and a ‘naughty’
dragon puppet and
told
that
they
should do what
the ‘nice’ bear
says but not what
the ‘naughty’ dragon says. The purpose of
this game is to test the child’s ability to
suppress an unwanted resonse (to avoid
responding on dragon trials). There is also
a computerised “Simon” task suitable for
adults and non-verbal individuals so
everyone can take part!
Concluding Note: We hope that you have
found this article interesting and we look
forward to meeting those of you who are
interested in taking part in our research. If
you would like to find out more about us and
our research then our contact details are
below. Contacting us does not mean you are
committed to anything. You can make your
mind up in your own time and can withdraw
at any time. No problem.
Contact: Chris Oliver, Jane Appleby or Laurie Powis
email: [email protected]
[email protected]
Telephone: 0121 414 2855
Postal Address: Centre for Neurodevelopmental Disorders, School of
Psychology, University of Birmingham, Edgbastone, Birmingham B15 2TT
23
30/9/08
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Fundraising
Leeds United and Football Aid
It started with a telephone call!
I received a telephone call from Peter Lockwood,
Player Liaison Officer at Leeds United. Leeds
United, along with the Football Aid (Field of
Dreams) had agreed to donate over £500 to our
support group. Peter had our details from our
conversation regarding the golf day and he was
reading the newsletter that I had sent him and
remarked how impressed he was with the
production and content.
I thanked him for the generous donation and asked
him if John and me could come and meet him and
have a photograph taken and probably report it in
the newsletter. Peter then suggested that John and
me travel to the Thorp Arch training ground at
Wetherby and have the photograph taken there.
So one grey morning in November, John, Kath and
me drove up to Wetherby and met Peter. We were
shown around the training facilities and met some
of the players. The facilities at Thorp Arch are first
class. Upstairs was a restaurant and small gym
with treatment room next door. Downstairs has a
small size football pitch and an Olympic size
swimming pool with a bathing and showering area.
After our tour around the facilities we had a couple
of photographs taken and Peter said it was nearly
time to have the cheque presented to us. Peter
remarked that Dennis Wise was going to present it
to us but just as we about to go ahead Dennis was
called to a meeting so plan B had to be
implemented! Peter said that he would get one of
the players to present the cheque to us.
We then had a photograph taken with David Healy,
Leeds United and Northern Ireland striker, just after
this a man who was stood near us asked what we
were doing and what my role was. I had a brief
conversation with him and then was asked to step
outside for the presentation of the cheque with one
of the players, Shaun Derry. Afterwards the guy
who came to talk to us prior to the photograph was
there again, this time with a microphone and a
tape recorder! He was from the radio station based
at Elland Road. He asked me again who I was and
what my role was. He then interviewed Shaun
Derry from Leeds Utd. Afterwards he said the
interview would be on at 5-30 that evening.
24
After the formal proceedings we extended our
thanks and said goodbye to Peter and made our
way home, excited that again our group had
been recognised and were the recipients of a
donation. That evening we tuned into the radio
station, the presenter came on and said that
Leeds had today presented a cheque to the
R.T.S. Support Group, I shouted to Kath. “It's
on the radio quick come and have a listen”.
Again the presenter repeated what he said
about the cheque and played the interview with
Shaun Derry, “This is it Kath, we are next”. The
presenter then started to play some music and
my interview was lost for ever! Still the group
had a cheque and we had raised awareness of
R.T.S. at the football club.
A friend of mine rang a few weeks after to
inform me that the photograph was in the Leeds
programme, so I rang the club and enquired if
we could receive a copy of the programme.
Peter then left me three copies at reception.
This had all come about from the golf day.
Sending newsletters out and requesting support,
raising awareness comes hand in hand with
raising money. The football team maybe
struggling but their community work has to be
applauded.
John Peat
Job Description
30/9/08
16:15
Page a28
This job description was in one of the Children Act
Registers based in Stockport, which in turn found
it in the Leicester one.
We wanted to show you what a great job you all
do as parents!
Parent(s) required for child with disability
This is a permanent post
Hours: 168 per week (24 x 7), 52 weeks a year.
Holidays/time-off: by negotiation with statutory/voluntary or private agencies (not guaranteed).
Qualifications/Experience required: no previous experience necessary. No training will be provided.
Salary: £0.00 - though Carer’s & Disability Living Allowance are available. Subject to filling in long and complicated
forms.
Job purpose: to provide a full parenting service to a child or children with disabilities or specific needs. This
includes promoting their human rights, ensuring that all of their needs are fully met and that they take an active part
in family life and the wider community.
Accountable to: partner, child or children with disabilities, other children and extended family.
Essential Criteria:
* The ability to love unconditionally with boundless energy and patience.
* The ability to work under immense pressure.
* Must be prepared to work anti-social hours with no sick leave or time off in lieu.
* Physical strength (role requires a lot of manual labour, well developed shoulder and back muscles are essential.
* The ability to balance the needs of this child with the needs of other children and family life. This could include
combining this role with full/part time employment or study.
* A thick skin: the role receives a lot of criticism - you will need to be prepared to be stared at and judged by others
around you at all times.
* Excellent organisational skills (you will have a variety of appointments to juggle without the support of a
secretary/personal assistant.
* The ability to multitask.
* Good networking skills, combined with the ability to work independently and use your own initiative.
* Must be prepared to become skilled in non-verbal communication techniques and interpretation of body language.
* Must not be fazed by bodily fluids.
* Must have an empathetic nature, able to work with children/adults who may be distressed.
* Must be determined, assertive, proactive and have a good sense of humour.
Desirable Criteria:
* Knowledge of laws and entitlements inc Disability Discrimination Act and Disability Living Allowance - though this
will all become second nature very quickly.
Job satisfaction is very high and, with the right amount of support, it can be the most
rewarding job in the world.
25
30/9/08
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Useful Information
Visa Scam
This one is pretty slick since they provide Y O U with
all the information, except the one piece they want.
Note, the callers do not ask for your card number;
they already have it. This information is worth
reading. By understanding how the VISA &
MasterCard Telephone Credit Card Scam works, you'll
be better prepared to protect yourself.
One of our employees was called on Wednesday from
"VISA", and I was called on Thursday from
"MasterCard".
The scam works like this: Person calling says, "This
is (name), and I'm calling from the Security and
Fraud Department at VISA. My badge number is
12460. Your card has been flagged for an unusual
purchase pattern, and I'm calling to verify. This
would be on your VISA card which was issued by
(name of bank) did you purchase an AntiTelemarketing Device for £497.99 from a Marketing
company based in London?" When you say "No", the
caller continues with, "Then we will be issuing a
credit to your account. This is a company we have
been watching and the charges range from £297 to
£497, just under the £500 purchase pattern that
flags most cards. Before your next statement, the
credit will be sent to (gives you your address), is
that correct?"
You say "yes". The caller continues - "I will be
starting a fraud investigation. If you have any
questions, you should call the 0800 number listed on
the back of your card (0800-VISA) and ask for
Security.
You will need to refer to this Control Number. The
caller then gives you a 6 digit number. "Do you
need me to read it again?"
Here's the IMPORTANT part on how the scam works
the caller then says, "I need to verify you are in
possession of your card." He'll ask you to "turn your
card over and look for some numbers." There are 7
numbers; the first 4 are part of your card number,
the next 3 are the security numbers that verify you
are the possessor of the card. These are the
numbers you sometimes use to make Internet
purchases to prove you have the card.
26
The caller will ask you to read the 3 numbers to
him. After you tell the caller the 3 numbers, he'll
say, "That is correct, I just needed to verify that
the card has not been lost or stolen, and that you
still have your card. Do you have any other
questions?" After you say, "No," the caller then
thanks you and states, "Don't hesitate to call
back if you do", and hangs up.
You actually say very little, and they never ask
for or tell you the Card number. But after we
were calledYon Wednesday, we called back within
20 minutes to ask a question. Are we glad we
did! The REAL VISA Security Department told us
it was a scam and in the last 15 minutes a new
purchase of £497.99 was charged to our card.
Long story - short - we made a real fraud report
and closed the VISA account. VISA is reissuing
us a new number. What the scammers want is
the 3-digit PIN number on the back of the card.
Don't give it to them. Instead, tell them you'll
call VISA or MasterCard directly for verification of
their conversation. The real VISA told us that
they will never ask for anything on the card as
they already know the information since they
issued the card! If you give the scammers your 3
Digit PIN Number, you think you're receiving a
credit. However, by the time you get your
statement you'll see charges for purchases you
didn't make, and by then it's almost too late
and/or more difficult to actually file a fraud What
makes this more remarkable is that on Thursday,
I got a call from a "Jason Richardson of
MasterCard" with a word-for-word repeat of the
VISA cam. This time I didn't let him finish. I
hung up! We filed a police report, as instructed
by VISA. The police said they are taking several
of these reports daily! They also urged us to tell
everybody we know that this scam is happening.
Please pass this on to all your family and friends.
By informing each other, we protect each other.
Mags Ruck
30/9/08
16:15
Page a30
Mencap’s Wills and Trusts Information Service
Every year the Wills and Trusts team advise over
3000 parents and carers of people with a learning
disability on how best to make a will and set up a
trust. The team helps people to secure future
financial support in the best possible way for a loved
one who has a learning disability.
These are some of the free services Mencap
provides::
Helpful guides and booklets including:
* Leaving money in Trust: Mencap's guide to
leaving money to people with a learning disability.
* A guide to making your will: A factsheet of the
key things to consider when making or updating your
will.
* An easy-to-read guide to wills: Information
about wills written for people with a learning
disability.
* Don't leave until tomorrow what you can do
today: Information about leaving a gift in your will
to Mencap.
* Free two-hour 'Planning for the Future'
seminars across the country. Each region of
England, Wales and Northern Ireland is visited
annually. The seminars are delivered by a qualified
local solicitor who provides delegates with advice on
issues such as: why to make a will, what to include
in a will, and what are trusts - the benefits and the
types available, enduring powers of attorney and the
court of protection. There is also opportunity to ask
questions.
* A recommended directory of specialist
solicitors - solicitors from across the country are
selected by a strict criteria, mainly based on their
experience of working with parents and carers of
people with a learning disability and also their
expertise in making wills and setting up trusts.
* Aarti Puri is Mencap's in-house wills and
trusts solicitor, her role is to advise parents, carers
and trustees about their options when considering
their family members with a learning disability in
wills and trusts. Aarti gives advice over the phone,
and by email.
Aarti is happy to answer any queries on:
*
Making and changing wills
*
Making enduring powers of attorney and
*
Setting up trusts (including Mencap Trust Co)
registering at the Court of Protection
*
Issues of capacity
*
Appointment of receivers at court of protection
*
*
*
*
*
*
*
Welfare and healthcare decisions
Living wills
Making statutory wills
Finding a solicitor for advice
Trustees responsibilities and duties
The rules that apply to means-tested benefits for
people with a learning disability
The new Mental Capacity Act 2005
Mencap Trust Company Limited
Mencap Trust Company Limited is a company that
manages discretionary trusts set up for people with a
learning disability. Some people choose to appoint a
company rather than an individual to act as the
trustee of their trust . This may be because they do
not know anyone who can act as trustee, or because
they do not want to place the responsibility on them.
In addition, the trust company has expertise and
experience in running trusts.
To find out more about any of these services
call the team on 0207 696 6925, email
[email protected] or visit
www.mencap.org.uk/willsandtrusts
27
30/9/08
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Useful Information
Wills and Trust Cont’d
Wills and trusts…ten common misunderstandings - and the truths!
“You would be surprised to know how many misunderstandings there are, and how much people trust what
they hear,” says Aarti Puri, Mencap's in-house wills and trusts solicitor. The wills and trusts team have advised
3,000 parents in the past 12 months and demand continues to grow. They are working hard to equip parents
and carers with the right information at free seminars and to encourage them to ask for help if they need it.
Here are the top ten misunderstandings:
1.
When I die, everything will pass to my surviving partner automatically.
WRONG! If you are married with children, the first £125,000 will pass to your surviving partner and the rest
will pass into a trust for your surviving partner and children. During your partner's lifetime, they will have a life
interest in the trust and on their death, the trust will be divided equally between your children. If you are
married with no children, your surviving partner will get £200,000 and the rest of your estate will pass to your
parents equally, or if they do not survive you, your siblings in equal shares or their children, and so on down
the family line.
2.
When I die, my child with a learning disability will not be able to inherit from my estate
because they do not have any concept of money.
WRONG! All adults over the age of 18 years are able to inherit in the eyes of the law. The law does not
recognise that a person with a learning disability may not have the concept of money.
3.
It's alright if I do not leave any money to my child with a learning disability in my will.
4.
I can appoint guardians in my will for my adult child with a learning disability.
WRONG! If you do not make “adequate provision” for any of your children in your will, they can challenge your
will after your death and request the Courts to re-write your will to make provision for them. If you have a
child with a learning disability, a third party can do this on their behalf, and this includes the Local Authority,
who will use any inheritance agreed by the Courts to pay for your child's care.
WRONG! You can only appoint guardians in your will for a child under the age of 18 years.
5.
A trust can be set up after my death to protect any inheritance that is left to my child with a
learning disability.
WRONG! Although a deceased's will can be varied up to 2 years after their death by signing a legal document
known as a “deed of variation”, this can only be done by a person who has the mental capacity to do so (this is
a legal test). If your child with a learning disability does not have the mental capacity to sign a legal document,
then a trust can not be set up after your death. If your child with a learning disability does have the mental
capacity to sign a legal document, then the authorities may question the setting up of a trust as an act of
“capital deprivation” and it may be challenged.
28
6.
30/9/08
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All trusts are the same.
WRONG! There are lots of different types of trusts and you need to take advice about the most suitable type
for your family after your death. The common ones that parents of a child with a learning disability should
consider are:
Discretionary - where the trustees can benefit anyone from a class of beneficiaries at any time in relation to
either income or capital or both; this is the most flexible form of trust set up by families; if your child is a
beneficiary of this type of trust, this will NOT have a negative effect on means-tested benefits;
Life Interest - where a beneficiary is entitled to the income from the trust fund for their life, and on their
death the capital is paid out to another person; if your child is a beneficiary of this type of trust, this will have
a negative effect on means-tested benefits depending on the level on income received;
Disabled - if a beneficiary falls within the definition of “disabled”, a special trust can be set up for them which
guarantees that all income and 50% of all capital payments must be paid to the disabled beneficiary whilst
the trust is running, and on their death the trust can operate as a discretionary trust;
7.
I need lots of money to set up a trust.
WRONG! You can set up a trust from as small an amount as £10,000 with the Mencap Trust Company Limited.
If you wish to set up a small trust, it would be sensible not to incur professional costs as this will eat up into
the trust fund. However with larger trusts, professional costs will be part of the running costs of the trust.
8.
I can just leave my property to my child with a learning disability because it will not affect
their means-tested benefits eligibility.
WRONG! If you leave a property to your child, it may not affect their eligibility for means tested benefits
(currently income support and housing benefit), but it will be taken into consideration by the Local Authority
when they consider funding for care.
9.
When I die, I do not have to pay any inheritance tax on any trust that I set up for my child
with a learning disability.
WRONG! Every person who is worth over £285,000 (this amount increases every year) on their death must
pay inheritance tax at 40% of the value over £285,000. There is no exception if you leave money to a trust
for your child with a learning disability. The only exception is if you leave everything to your spouse and/or to
charity - then there is NO inheritance tax to pay at all!
10.
All solicitors are the same and they can all make wills.
WRONG! Every solicitor has a specific area that they specialise in, and wills and trusts is one such area. Make
sure that before you instruct a solicitor to make your will, they have the specialist experience in making wills
for parents of people with a learning disability and setting up (and maybe running) trusts for people with a
learning disability. You wouldn't go the dentist to get eyes checked, would you?!- and the same applies to
making your will.
29
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Useful Information
Wills and Trusts Cont’d
Ask Aarti
Confused by jargon and legal mumbo jumbo?
Mencap's wills and trusts solicitor, Aarti Puri, is
there to help answer your queries.
Below, she tells us the answers to three of the most
common questions parents ask her.
My mother recently left £25,000 in her will to
my daughter Jenny, who has Down's
syndrome. Will it affect Jenny's benefits?
Such an inheritance will affect any means-tested
benefits that Jenny receives, Any lump-sum of
capital over £6000 has a reducing effect of the
eligibility to benefits on a sliding scale, and any sum
over £16,000 means that all benefits will be lost.
Also, the solicitor dealing with your late mother's
estate will need to receive a valid receipt from
Jenny - and if she is not able to give this, then it
has to be given by someone with her financial
affairs (know as her “Attorney”) can give receipt on
her behalf. If Jenny has the mental capacity to
appoint someone as her attorney (this is a legal
test) under an Enduring Power of Attorney, then she
can appoint you as her attorney, then she can
appoint you as her attorney. If not, then you will
have to make an application to the Court of
Protection to request that you are appointed as her
official attorney, which is known as her “Receiver”.
I understand that this is an unfortunate situation to
be in. Sadly, this could have been avoided by
money being left to your daughter in a discretionary
trust.
We want to leave the family home in a trust
fund for our son Thomas, who has a learning
disability. What should we do?
I would advise you to ensure the trust also contains
enough money to maintain the house throughout
Thomas's life. If your main asset is your home and
you do not have any other capital, you may have to
consider downsizing to free up money for the trust.
30
My youngest child, Mark, has a learning
disability. My eldest children will look after him
after I die, so should I leave everything to
them?
I wouldn't advise you to do this because if your
children encounter money problems (through divorce
or bankruptcy for example), Mark could lose out.
Instead, think about setting up a discretionary trust
for Mark in your will leaving a share of your estate,
or a sum of money to the trust, which your other
children can benefit from after Mark's death.
If you would like more information about providing
for the future of your loved one please contact:
The wills and trusts team
Tel: 020 7696 6925
Email:[email protected]
www.mencap.org.uk
30/9/08
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A Matter of Trust
Case Studies
Sometimes, people with a learning disability aren't
able - or find it difficult - to deal with finance. If this
is the case with your loved one, it's important to
ensure that they are suitably provided for when you
are no longer around.
Christopher’s Story
“Hello, I'm Christopher and I have a trust fund
managed by Mencap Trust Company*. I want to say
thank you to the Mencap Trust Company for sending
me money for my birthday and my holiday, which I
enjoyed very much. Two members if staff came with
me; one of them was the driver. We hired a car and
drove across to see my auntie in Edinburgh. It was
lovely to see her. I also want to say thank you for
sending me money for my computer and all the
accessories.”
If you would like to receive information about the
Mencap Trust Company, please call Gina on 020 7696
6925
*The name and image used are for illustrative
purposes to protect the identity of 'Christopher'.
Jack's Story
Jack has a learning disability and his father set up a
trust for him with the Mencap Trust Company. Jack's
father wanted all of his estate to be left for Jack and
managed by the
Mencap Trust Company.
Jack's father was very
dedicated to his son's
needs and he wanted
to make sure that he
was taken care of.
Sadly, Jack's father
died last year.
Since then, at Jack's
request, the Mencap
Trust Company has
been funding the cost
of living in a care home
of this choice. Jack also
uses his trust money
for visits to his family
in Southend-on-Sea
and for an annual season ticket for West Ham FC the football club he loves!
* The name and image used are for illustrative
purposes to protect the identity of 'Jack'.
31
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Over to Dawn
Constipation
Hi to you all
I am Dawn Elliker, married to Kev and we have 3
children - Charlotte (17), Joe (13) and Katie (9) who
has RTS. I am also a qualified nurse, and it struck
me from reading some of the replies on the website
forum that there are people who are looking for a
greater understanding of some of the medical
diagnoses given to their RTS individuals. I don't
claim to be a doctor but I do have some
understanding of some of the medical terminology.
I have, therefore, decided to try a new section for
the newsletter that will combine details from the
website forum (particularly useful if you don't have
internet access - you won't miss out!) along with a
specific subject / condition that is being discussed at
the time.
N.B. Please bear in mind that if you have been given
medical guidance pertaining to your particular
circumstances from a medical practitioner, then you
should continue to follow those guidelines.
This session is on constipation as this appears to be
a problem with many.
What is constipation?
Incomplete or infrequent action of the bowel.
Types of constipation include:
Tonic constipation - caused by lack of muscle tone in
the bowel wall. This may be the most likely cause in
individuals with RTS as they are commonly found to
have low muscle tone generally, particularly when
younger?
Spastic constipation - a form of constipation where
spasm of part of the bowel wall narrows the
canal.(see forum entry below)
Constipation with overflow - often mistaken as
diarrhoea so be careful. This is caused by an
accumulation of stool in the rectum
(the lower part
11
of the bowel) and watery stool leaks around it. In
this situation, you may believe that the affected
person has had an 'accident' or that they have
diarrhoea. You might then withhold regular
treatment prescribed for constipation, and
subsequently make the situation worse.
32
Some of the issues raised on the website forum
relating to this problem include:
'Katie is 8 and has constipation. She has had several
episodes in hospital over the last year with severe
spasm of the bowel and she seems to be in almost
constant discomfort /pain, which is distressing. Her
condition seems to be worsening.
Lauren used to suffer from severe constipation
before she had her gastrostomy(feeding tube
inserted directly into the stomach) but since then
has been doing very well.
Julie is 36 and has RTS - she says: I have had bowel
problems but I am now on a wheat free diet and I
am 90% better - I recommend you try it with your
child.
Tashan has very bad constipation. He is almost 12
months and gets a lot of pain when straining. We
have tried lactulose, senna, docusol, as well as
having plenty of fibre and fluids but nothing really
works.We find that cows milk and possibly foods
containing gluten seem to make his constipation
worse.'
What is a 'normal' bowel habit?
Normal does not mean that you should have a bowel
movement every day. If you go on alternate days
then that can be normal for you, provided that you
are well and are having no difficulties.
What can be done before medical intervention?
Before any medical treatment, you should ensure an
adequate intake of fibre and fluids. In an adult, fluid
intake should be a minimum of 2 litres (4 pints) per
day. For children, ask your school nurse or health
visitor who can advise you specifically on the
requirement for your child. If you are unwell, then in
an ideal world you should increase that amount if
possible e.g if you have a raised temperature when
more fluid is lost through perspiration. Remember
that in an adult, insensible loss (from breathing,
perspiration) is 800mls per day.
You should ensure adequate dietary intake of fruit /
vegetables and fibre. If you suffer from constipation,
then maybe you need more than the average
amount. Also remember that fibre with insufficient
30/9/08
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www.rtsuk.org
fluid to accompany it, will set like concrete!(consider
a weetabix that is left - it absorbs all of the fluid
available and then hardens)
Can anything else cause constipation?
Poor mobility / a sedentary lifestyle can affect
constipation. I wonder if this is an issue amongst
some of the younger RTS sufferers as they are often
less mobile until an older age.
Some medication can cause constipation, the obvious
one being some of the stronger painkillers. It is
worth checking with your Doctor if you think this
might apply.
There are some individuals whose constipation gets
worse when they are not in their home environment.
I would suggest that RTS individuals are no different
to the rest of us - different water, climate, toilets
affect all of us and treatment may just be required
at these times.
Is all medication the same?
Medicines used to treat constipation can be divided
into different categories;
i)
Stimulants eg senna, bisacodyl, ducosate
sodium - act by increasing intestinal motility by
stimulation of colonic nerves. Their effect should be
within 8-12 hours, hence the reason that they are
often taken at night.
ii)
Bulking agents eg ispaghula - act by
retaining fluid within the stool and increasing faecal
mass, leading to stimulation of peristalsis
(movement of the stool through the bowel). These
can take several days to be effective.
Is allergy testing a good idea?
I think that your Doctor would be the person to
answer that best, but I do think that if the problem
is persistent and unresponsive to treatment, then it
will not do any harm. Interestingly, if cows milk is
your child's main fluid, then there is research to
suggest that reducing intake and replacing with an
alternative can help constipation in children. This is
NOT specific to RTS children.
Does constipation lessen in RTS individuals?
I don't know but looking at the forum details, they
are mainly from parents of children. Does this mean
that it becomes less of a problem or that we just get
used to dealing with it? Do we eventually find a
treatment that works so that it is no longer an issue?
Any thoughts on the forum would be
interesting.
I hope this helps some of you. Some feedback
would be useful in order for me to decide
whether to continue with such a format.
Dawn Elliker
iii)
Osmotic agents eg lactulose, movicol- act by
increasing the amount of fluid in the large bowel.
The effect can take up to 48 hours to work.
iv)
Faecal softeners eg ducosate sodium. It acts
by increasing penetration of intestinal fluid into the
faeces.
v)
Suppository /enema - used as a rapid relief
of rectal loading. It will only work on the rectum
though and will not be a long term solution.
33
30/9/08
16:15
Page a37
RTS Merchandising
Merchandising
I am not going to start off this time by telling
everyone how good the merchandise is at Marjorie’s
Fashion Store. No, I have decided I will leave that
to the end this time......
I heard on the grapevine that there are new items
available. I have listed all the items available just a
little further down.
But really the best news is that you can now take a
look at all the RTS Support Group merchandise on
the website.
I find the best way to go about this is to make a cup
of tea (see here it is again!), log on to
www.rtsuk.org (obviously have a quick look to see
what is new) and then click on Products. I
download the form and print it off and then the fun
begins. I scroll up and down finding what I want to
buy and then have a very hard decision to make what colour shall I have this time? I go back and
forwards - shall I go pastel or bold? But enough of
my raving - take a look for yourself!
Merchandise
available
Sweatshirt
Poloshirt
Fleece
Body-warmer
Knitted hat
Baseball hat
Visor
Golf Towel
Pen
Pencil
Eraser
Pencil case
Spiral notebook
Wallet
Notebook & Pen
Coasters
34
Fundraising
30/9/08
16:15
Page a38
Friends of RTS Fund
Easyfundraising
RTS Support Group
DO YOU SHOP ON LINE?
IF SO, YOU CAN RAISE FUNDS
FOR THE RTS SUPPORT GROUP
WITH ONE CLICK!
Easyfundraising is a shopping directory listing some
of your favourite online stores including, Argos, Next,
Amazon, Debenhams, John Lewis, Toys R Us, HMV
and over 600 other top name stores.
Whenever you shop with any one of them using the
links provided on the Easyfundraising site, you’ll
generate a free donation for us of up to 15% of the
purchase price every time. It really is that simple.
It’s completely FREE to register and you won’t pay a
penny more for your shopping when you use the
Easyfundraising site. In fact you fan SAVE MONEY
as many retailers give discounts, special offers, even
‘e-vouchers’ exclusive to Easyfundraising.
You can shop for holidays, flights, electronics, mobile
phones, computing equipment, food, wine, pet
supplies, finance, insurance, clothing, toys and just
about anything - and every purchase you make will
raise funds for us at ABSOLUTELY NO COST TO YOU.
All you need to do is register for free at
www.easyfundraising.org.uk/rts and
use this site every single time you shop
on line.
This site has been used and tested by
the RTS Support Group committee
members and it works! Please just use
the www.easyfundraising.org.uk/rts
web address and then click through to
the store that you want to shop in.
THANK YOU IN ANTICIPATION!
I WILL LET YOU KNOW HOW MUCH WE HAVE
RAISED IN THE NEXT NEWSLETTER!
1.
The Friends of RTS Fund* is administered by
the Rubinstein Taybi Syndrome Support Group
(hereafter referred to as the Group) and is available
to provide member families with financial support as
specified below.
2.
Families who wish to attend an event
organised by the Group (e.g. Get Together, Annual
Draw, AGM etc.) but require subsistence can apply
for a contribution for funding their trip. This includes
help towards the cost of travelling and any necessary
overnight accommodation.
3.
Claims will also be considered from member
families** for subsistence allowance appertaining to
an RTS child. For example, unexpected travelling
expenses in conjunction with medical appointments
or treatments.
4.
It is expected that the most economical form
of public transport should always be used. For petrol
claims, the rate payable will be 20 pence per mile.
5.
All applications for funding will be treated as
confidential and any payment made will not be
evident in the general financial reports produced.
Three of the following officers - Chair, vice chair,
treasurer and secretary - will consider all
applications for subsistence to ensure the claim is
reasonable, and in some instances a reduced offer
may be made.
6.
Applications will not be subject to means
testing.
7.
The final payment made following any
request, will be at the discretion of the officers
involved.
8.
All decisions by the officers are final and no
further correspondence will be entered into. A
request does not guarantee payment.
9.
The Fund is only available to UK families.
For more information please contact:
Mrs D Elliker, RTS Support Group Treasurer
8 Tower View, Sleaford, Lincs NG34 7TE
Tel: 01529 415145
e-mail: [email protected]
*The Friends of RTS Fund was established in the year 2000 following the
tragic death of Owen Love in a road accident. Owen was a supporter of the
Group - Carey Morton, the sister of his fiancée has RTS. Donations received
at his funeral provided the money to establish the Fund.
** Member family - i.e. those on the official RTS Group database
35
Bits and bobs!
everyclick.com
Everyclick.com is a search engine. Make it your
home page - select your charity no ie. RTS no and
50% of each log in goes to nominated charity. No
cost to the person logging in.
If you can’t find your info in everyclick, you can also
to to google or yahoo afterwards.
Info from Mary White.
Help!
It’s me again! Need all sorts of things please.
1. Stories for the next newsletter
2. Articles of interest
3. Little bits and bobs that you would like to
share
4. A drawing of a Christmas scene for our
Christmas Card
5. Anything else - will leave it to you!
Thanks from Max
Well done Jamie!
Jamie Bennell has gained his 5 metre badge whilst
swimming at Yate Leisure Centre with his school,
Culverhill. I have been teaching Jamie for around 2 yrs
now and he is beginning to swim unaided.
Holly Payne
Swimming Co-ordinator
Yates Leisure Centre
36
30/9/08
16:15
Page a39
RTS Website
Do you use the Forum?
Are you keeping your eye on the website to keep up
to date with what is happening in our group?
NO .... Why not? Andrea Simpson does a fantastic
job of making sure that the website is always up to
the minute with information.
Just visit www.rtsuk.org - take a look, order your
merchandise.
And visit the forum. The forum is your opportunity
to talk to other members. Ask questions, answer
questions, just get support and chat to other
families.
New families and families from abroad come on to
our site looking for support - please we need as
many people to join in with the forum.
LET’S SUPPORT ONE ANOTHER AND ONE
AVENUE WE CAN DO THIS IS BY USING
THE FORUM ON
WWW.RTSUK.ORG
See you there!
30/9/08
16:15
Page a40
A Little Light Relief
Brainteasers!
The McCleods
Answers on the back page - no looking before you have finished the teasers!
1. You are driving a bus. At the first stop, 2 women
get on. The second stop, 3 men get on and 1 woman
gets off. Third stop, 3 kids and their mum get on
and a man gets off. The bus is grey and it is raining
outside. What colour is the bus driver’s hair?
2. An Arab sheik is old and must will his fortune to
one of his two sons. He makes a proposition. His
two sons will ride their camels in a race and
whichever camel crosses the finish line LAST will win
the fortune for its owner. During the race, the two
brothers wander aimlessly for days, neither willing to
cross the finish line. In desperation, they ask a wise
man for advice. He tells them something; then the
brothers leap onto the camels and charge toward the
finish line. What did the wise man say?
7. What can run but never walks, has a mouth but
never speaks, has a head but never weeps, and has a
bed but never sleeps?
8. I left my campsite and hiked south for 3 miles.
Turned east and hiked for 3 miles. Then turned north
and hiked for 3 miles, at which time I came upon a bear
inside my tent eating my food! What colour was the
bear?
9. Please add the following numbers in your head.
Start with 1000
Add 40
Add 1000
Add 30
3. You are in a room that has 3 switches and a
closed door. The switches control 3 light bulbs on
the other side of the door. Once you open the door,
you may never touch the switches again. How can
you definitively tell which switch is connectd to each
of the light bulbs?
4. Your dad tells you that he will pay you £6.00 an
hour for the 6 seconds that you take to wash your
hands before dinner. How much did you make for
washing your hands?
5. You have a 3 gallon jug and a 5 gallon jug. You
need to measure out exactly 7 gallons of water. How
can you do it?
6. Which came first, the chicken or the egg?
Add 1000
Add 20
Add 1000
Add 10
Write down your anwer.
10. You are a cyclist in a cross-country race. Just
before the crossing finish line you overtake the person in
second place. What place did you finish in?
11. A man left home running. He ran a ways and then
turned left, ran the same distance and turned left again,
ran the same distance and turned left again. When he
got home there were two masked men. Who were they?
12. What is full of holes but can still hold water?
I bet that got you thinking?
37
30/9/08
16:15
Page a41
Useful Contacts
Mencap Learning Disability Helpline
NHS Direct
N Ireland: 0845 7637 227
Telephone service staffed by nurses, giving
confidential healthcare advice and information, 24
hrs a day.
England: 0808 808 1111
Wales: 0808 8000 300
www.mencap.org.uk and www.askmencap.info
Open 24 hrs a day. If an advisor isn’t available
when you call, you can leave a message.
Contact-a-Family Helpline
0808 808 3555
www.cafamily.org.uk
Supports families and children with special needs
up to the age of 19, offering general advice and
information.
0845 4647
Benefit Enquiry Line
0800 882200
www.dss.gov.uk
British Institute of Learning Disabilities
01562 850251
www.bild.org.uk
Family Fund Trust
Independent organisation committed to improving
the quality of life of all people with a learning
disability.
www.familyfundtrust.org.uk
02476 696510
01904 621115
Grants and information for families of severely
disabled children and young people up to 16.
Carers UK
Riding for the Disabled
The national organisation can put you in touch with
your
nearest group.
Challenging Behaviour Foundation
0808 808 7777
01634 838739
www.carersuk.org
Branches throughout the UK.
Ask Mencap
www.askmencap.info
Interactive website containing info on learning
disability issues and services.
_________________________________________
www.thecbf.org.uk
Information about challenging behaviour and
learning disabilities.
Fledglings
0845 4581124
www.fledglings.org.uk
Clothing for Children with Disabilities
Helps to obtain information about appropriate
products.
www.racketys.com
Sibling Support Group
01583 381430
Clothing manufacturer specialising in clothes for
children with disabilities.
Home-Start
0800 068 6388
38
_________________________________________
01535 645453
www.sibs.org.uk
Sibling issues.
www.home-start.org.uk
These numbers apply primarily to the UK, and some of the services may not be available to
those living in other countries. A listing here does not imply any endorsement by the RTS
Support Group of the services offered by any of these organisations. All information appearing
here is supplied in good faith, but no liability can be accepted for any inaccuracies.
Who’s Who
30/9/08
16:15
Page a42
Chairperson
Regional Co-ordinator (Scotland)
21 Cricketers Green, Yeadon, Leeds LS19 7YS
7 Woodhead Green, Hamilton L3 8TJ
The McCleods
John Peat
Tel: 01132 503778
Vice Chairperson
Jean McCleod
Tel: 01698 300730
Andrea Simpson
Newsletter Editor
Tel: 01543 256808
38 Digby Close, Tilton on the Hill, Leics LE7 9LL
3 Burns Close, Lichfield, Staffs WS14 9DW
Treasurer
Maxine Aldred
Tel: 0116 2597 707 or 2597 281
Dawn Elliker
Committee Member
Tel: 01529 415145
116 Quickly Lane, Chorleywood, Herts WD3 5PQ
8 Tower View, Sleaford, Lincs NG34 7TE
Secretary & Regional Co-ordinator (South)
Mags Ruck
69 Merlin Way, Chipping Sodbury, Bristol BS37 6XS
Tel: 01454 881173
National Co-ordinator
Rosemary Robertson
162 Buckfield Road, Leominster, Herefordshire HR6
8UF
Tel: 01568 7616149
Merchandise Organiser & Regional
Co-ordinator (Central )
Peter Burrows
Tel: 01923 285351
e-mail: enquiries”spabathroomsandtiles.co.uk
Honorary President, Contact for Families Abroad
Barbara Baron
46 Windsor Road, Gt. Harwood, Blackburn, Lancs
BB6 7RR
Tel: 01254 889122
Honorary Vice-President
David Barrett
1 Folly Hall Walk, Wibsey, Bradford BD6 1UZ
01274 675954
Marjorie Aldred
Manor Farmhouse, Quarry Lane, Atherstone CV9 1NL
Tel: 01827 714838
Regional Co-ordinator (South East)
Gill Hart
17 Greens Farm Lane, Billericay, Essex CM11 2EZ
Tel: 01277 633915
Regional Co-ordinator (North)
Kath Peat
21 Cricketers Green, Yeadon, Leeds LS19 7YS
Tel: 01132 503778
39
30/9/08
16:15
Page a43
And Finally...
And the time has come
to say “goodbye” .....
You have reached the last page of this
newsletter and I hope that you enjoyed the
stories and find the information useful.
4. 1 pence.
We really do want to hear from you!
6. The egg. Dinosaurs laid eggs far before there
were chickens!
The next newsletter will be out after
Christmas 2009 and I will need lots of
stories and articles. Send anything through
that you think might be useful.
At the time of writing plans have not been
finalised for the Christmas Family Day and
also Christmas Cards. Full details will be
available on the website - if you are not on
the internet, don’t worry, just give one of us
a call.
But before I go, I mustn’t forget to give you
the answers - otherwise you will be up all
night!
The answers to the brain teasers!
1. Whatever colour your hair is!
Remember, you are the bus driver!
2. The rules of the race were that the
owner of the camel that crosses the finish
line last wins the fortune. The wise man
simply told them to switch camels.
3. Turn on the first 2 switches. Leave them
on for 5 minutes. Once 5 minutes has
passed, turn off the second switch, leaving
one switch on. Now go through the door.
The light that is still on is connected to the
first switch, whichever of the other two is
warm to the touch is connected to the
second switch. The bulb that is cold is
connected to the switch that was never
turned on!!
40
5. Fill the 5 gallon jug, pour it into the 3 gallon
jug until the 3 gallon is full, leaving 2 gallons in
the 5 gallon jug. Now pour the 3 gallon jug out.
Pour the remaining 2 gallons from the 5 gallon
into the empty 3 gallon jug. Now fill the 5 gallon
from the tap. You now have exactly 7 gallons.
7. A river!
8. White. The only place you can hike 3 miles
south, then east for 3 miles, then north for 3 miles
and end up back at your starting point is the North
Pole. There are only polar bears in the North Pole
and they are white!
9. Many will get 5000. But the actual answer is
4100!
10. Second place. If you pass the person in
second, you take second place and they become
third.
11. The catcher and the umpire.
12. A sponge!
Hope you enjoyed this little light relief.
Maxine
Information given in this newsletter is given in good faith. The RTS Support Group
accept no responsibility for any information given or products advertised in this
newsletter. The RTS Support Group does not endorse any product whatsoever.
Christmas Family Day
30/9/08
16:16
Page a44

Newsletter 2008

Transcription

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