Contact a Family Wales September 2013 E-Bulletin
Welcome to the Contact a Family Wales e-bulletin. We hope the following news and
resources will be of interest to you. If you have details of any up and coming events or new
information which may benefit other families in your area please drop me a line – I would be
happy to hear from you. Andrew.kirby@cafamily.org.uk
This month's bulletin includes information :
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Contact a Family News
News and information on projects that support families of disabled children
throughout Wales
Our workshops and events so far...
We all enjoyed a lovely sunny day in Llandudno and our event had 59 people come along.
Venue Cymru showed the film Rise of The Guardians, which was a hit! Louise from Merry
Makers Aberystwyth provided a creative workshop, both during the film for children who
preferred to do an activity, as well as after the film. Some families brought their children
simply for the workshop experience as they do not feel their children are quite ready to sit
throughout a film just yet.
Louise used her wonderful talents as always and had provided an additional cake decorating
activity, in relation to the characters from the film, which was a delight for the children. In the
later workshop, children and adults made sunlight catchers from characters of the film and
seasonal shapes. This was very well attended for the full period and a great time had by all.
This was Contact a Family Cymru’s first event at Venue Cymru and everyone was highly
impressed with the support and service we received, both from the staff and volunteers who
were an incredible team. Every member of staff couldn’t do enough to help the families and
us as a visiting organisation. The whole event went smoothly and a was a great success
resulting in very positive feedback from families who attended.
Contact a Family’s workshop project is looking towards the autumn for our next few events.
If there are any parent workshops you would be interested in seeing in your area, please let
us know via email, or follow this link: https://www.surveymonkey.com/s/D6Q5KPR. Our
family film events across Wales are also going strong, thanks to funding from BBC Children
in Need. The craft workshop at our most recent event at Chapter Arts Centre in Cardiff was
great, with children making some really creative creatures inspired by the animals they had
seen in the film. We will be bringing these events across Wales, so if we haven’t already
run an event in your area, keep an eye out as we will be doing so soon!
NEWS
ASSOCIATION FOR THE WELFARE OF CHILDREN IN HOSPITAL
At the Annual General Meeting of the Association for the Welfare of Children in
Hospital held on 14th June 2013, as both chairman and treasurer were unavailable
for re-election and no nominations had been received for their positions, members
voted unanimously, and with regret, that there was no alternative but that AWCH
should be dissolved.
In compliance with the AWCH Constitution a Special General Meeting will be called,
in due course, to ratify this decision. This confirmation will empower the Executive
Committee to set in motion the final dissolution of AWCH and the disposal of any
assets remaining. The Charity Commissioners will be kept informed.
In order to carry out these functions, and the general winding-down by the
Association, the present executive committee members and officers agreed to
continue in post until 31st December 2013 and were duly unanimously re-elected.
The AWCH Travel & Emergency Fund will continue to be administered in the
interim.
The meeting was saddened at this final resolution but it was agreed that AWCH's
campaigning role had come to its natural conclusion. The present financial climate
makes virtually impossible the achievement of its final objective - a Welsh
Government-funded specific scheme reimbursing hospital travelling expenses for
children and their parents.
Members were eloquent in praise of the work of executive committee officers and
members who, over the past 50 years, had done much towards improved conditions
for children and young people who needed hospital care, and their parents. Thanks
were also expressed for the loyal support of AWCH members over the years.
They thank colleagues and friends for your co-working and support over the years.
The National Institute for Health and Clinical Excellence (NICE) has published new
clinical guidelines on the management and support of autism in children and young people.
According to NICE, recent studies have shown that there are more than half a million people
in the UK with an autism spectrum condition and at least one in 100 children is thought to be
affected. The new guideline from the government's health watchdog, Autism: the
management and support of children and young people on the autism spectrum, aims to
ensure that children and young people with possible autism, and their parents or carers, get
appropriate care and support.
Contact a Family particularly welcomes the recommendations in the new guideline to offer
families (including brothers and sisters of disabled children) and carers, an assessment of
their own needs, including whether they have personal, social and emotional support or
practical support in their caring role.
Families who are struggling to access services can contact our telephone helpline for
information and advice, including our education specialist helpline. They can also find more
information on sleep management and behaviour on the Carers, Families and Friends
section of our website.
News and General Information
PARENTS 2 PARENTS
Parents 2 Parents is a great and invaluable place to meet other parents/carers and their
families who have children/young people with special needs. They meet once a month in
the Neath area.
Whilst the adults enjoy a chat and getting to know you over some light refreshments the
children/young people love to play with the quality sensory equipment suitable for all ages in
a safe environment.
You can be sure to receive a warm welcome. They really would love to meet you.
Times and venues are subject to change so please contact:
Todd and Steph Presley 07794578333 or 07837053852
Parents2parents@hotmail.co.uk
Disability sport in Powys
Mid Wales have recently formed a Wheelchair Basketball team which trains at the
Flash Leisure Centre and recently won their second game against the West Coast
Warriors in Aberystwyth on August the 10th . Three of our players have recently been
selected to play for Wales in the Celtic cup , the National Juniors and Sainsbury`s
School Games .These are, brothers Frankie and Ben Jones and Reilly Shanahan
from Llanfair Caereinion and Welshpool .
Five athletes have been also chosen to represent Wales ,in the National Summer
Games in Bath in August and are from the Brecon Integrated Sports Association ,
Shain Lewis ( tennis) :Lloyd Crawley ( Badminton ) Hannah Charnley, Hugh O Reilly
and Joshua Longbottom ( all Athletics ) .
For more information on disability sport opportunities , please ring Beverley Tucker
on 01874 612034 , or email beverley.tucker@powys.gov.uk
Cerebra’s Sleep Service
Sleep disturbance is often a problem for families who have children with a
neurological condition or brain injury. Cerebra’s sleep team can support parents and
carers and help with a wide range of sleep issues including:
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Bedwetting
Good sleep hygiene
Nightmares
Night terrors
Anxiety at night
Night-waking
Sleeping alone
Rhythmic movement disorder
Biology of sleep
Melatonin
They can give advice by telephone, post or e-mail and in certain areas they have
sleep counsellors who can make home visits. They can also give talks on sleep related
topics to groups of parents or professionals.
You can view some of their information booklets on their website
www.cerebra.org.uk.
To find our more please contact them at sleep@cerebra.org.uk or call them on their
freephone helpline 0800 328 1159.
Cerebra is a national charity supporting children and young people with
neurodevelopmental conditions and brain injury through research, education and
direct, on-going family support. To find out more about how they can help visit our
website www.cerebra.org.uk.
SNAP Cymru
SNAP Cymru is an all Wales charity. Their aim is to advance the education of
families, children and young people, parents, their carers and professionals working
with those who have or may have additional learning needs.
SNAP Cymru will empower families (parents, carers, children and young people) to
have their voices heard within the area of Additional Educational Needs and
Disability and support them to influence policy and practice in the planning and
delivery of services at both local and national levels.
SNAP Cymru’s Independent Parent Partnership is free to families and our teams of
trained staff and volunteers provide impartial, accurate information, advice and
support.
For further information or support –
Please call their Telephone Helpline 0845 1203730
Or visit them at www.snapcymru.org
Events and Workshops
Launch of new website for Parent/Carers of Disabled Children and
Young People living in Swansea.
On the 16th of September 2013, Swansea will launch an exciting new website. This will
provide a single information point for parent/carers of disabled children and young people.
Information that will be available on the website includes;
 Things to do, places to go, events
 Organisations that can help in the Swansea area
 Links to national organisations
 Contacts
 How to access support for an emerging diagnosis
 Information on how child disability is addressed in Swansea
 A jargon buster
If you would like more information Please contact Sandra_Spratt @scvs.org.uk or Tel 01792
54401
Wheelie Good Idea project
On Saturday 28th September they will be holding a sponsored One Mile Wheel at Clynfyw
to raise funds to send their first shipping container to Durban, South Africa. And they really
hope you might like to get involved!
This is part of our Wheelie Good Idea project, which collects and refurbishes donated
wheelchairs and mobility aids for redistribution in Africa.
On the day of the One Mile Wheel, there will also be a barbeque, a mini-craft fair, tractor
rides, a raffle, weigh a cake competition, apple juicing demonstration and they are trying to
arrange some musical entertainment to (though this is still to be confirmed).
They hope you might be interested in getting involved in the day, perhaps being sponsored
yourself, or donating something to the raffle, guessing the weight of the cake, or sponsoring
someone else.
They have attached some more information and a (somewhat presumptuously!) a
sponsorship form in case you are interested.
They have made a film about Clynfyw: http://youtu.be/Da-AtVcYDDU but if you would like
more information, please let them know.
Jigsaw Fundraising walk
They are walking around Llyn Brenig, Corwen on Sunday 29 September 2013
Come and join them and raise money for JIGSAW
You can walk, run, skip, hop, bike ride, skate as long as you have fun and go as FAR as you
can to raise awareness of Autism and ADHD
For more information and to register please visit www.jigsawsupport.org and click on
Fundraising.