Family Weekend 2007

A report by Jenny Denham

The Family Weekend held in October 2007 was shorter than our usual weekends. Unfortunately we were unsuccessful with our grant application to Children in Need but we decided to go ahead anyway and use money from our existing funds. As you may be aware the main expense of these weekends is the child care as we need to have a high ratio of carers to children. In some cases even one to one. Of course, the children’s welfare is very important to us.

The Weekend started officially on Saturday evening with a hot buffet. As the Conference Room was not being used on Saturday afternoon the hotel, for no charge, was happy for us to set up the toys and prepare the packs there. Families arriving early were able to socialise and even help us with the preparation.

After the evening meal we held our National Raffle and again we were fortunate that most of the heavier prizes were won by families attending or there was someone present who could deliver them. This was followed by a rather prolonged game of bingo so we may perhaps hold a quiz next time. Luckily we didn’t have to buy any
prizes for either event as the Committee approached various companies who kindly supported us. Even the bingo books were supplied by Mecca in Exeter.

Ingrid, Dianna, Joep and André from Holland were again present as well as Pamela from Germany. Pamela was pleased to tell us that we had played bingo the last time she came and we have only played it twice since the Charity began in 1990. On Sunday we had some excellent speakers and we received very positive and complimentary feedback from families.

  • Dr. Syed showed a DVD of Brooke, Tracy`s daughter, having laser treatment at GOSH and Jane Linward joined her to talk about the after care.
  • Charlie Wise spoke about education, statementing and gave us some very informative packs.
  • Dr. Sarah Aylett spoke in general about Sturge Weber and the benefits of aspirin. As always she was happy to answer many questions from families.
  • Professor Paul Griffiths gave a very amusing and informative presentation on different methods of Brain Imaging and why the brain is injured in some Sturge Weber sufferers.
  • Dr. Miriam Conway from Aston University, the last speaker, told us about her findings from the study of occular and cerebral blood flow. This is the research the Charity funded and in which many of you took part.

We are most grateful to all the speakers for giving up their time to be with us.

While families were presented with new information from the Doctors the older children went off to Cadbury World. The younger ones were entertained in the crèche with activities supplied by Childs Play as well as the Charity’s toys from Little Tykes. When the children returned from Cadbury World they enjoyed the Disco provided by the Hotel. There was some disappointment because of a little confusion caused by a breakdown in communication, we understand, but the Hotel was very apologetic for the late arrival and made no charge.

The end of the Day finished with our usual sticky buns and goodbyes. We felt that although our speakers are always very professional and informative, this year was probably the most entertaining that we have ever had.


Some quotes from Charlie Wise

Just like many people who enrol for a course/conference, we can be pleasantly surprised or disappointed by what is presented today. This humorous quote from Schultz is a good illustration of what may or may not lie ahead.

I learned something in school today.
I signed up for folk guitar, computer
programming, stained glass art, shoemaking
and a natural foods workshop.

I got spelling, history, arithmetic and
two study periods.

So what did you learn?

I learned that what you sign up for
and what you get are two different things.

- Charles Schultz (Peanuts)

The following two poems from very different sources illustrate the possible impact of the action of children on each other (in the first poem) and that of the teacher on children (in the second) upon the promotion of self-esteem.These are not cited as criticisms but show how the self-esteem of a vulnerable child can sometimes be inadvertently undermined.

When we pick teams in the playground
Whatever the game might be,
There’s always somebody left till last
And usually it’s me.

I stand there looking hopeful
And tapping myself on the chest,
But the captains pick the others first,
Starting, of course, with the best.

Maybe if teams were sometimes picked
Starting with the worst,
Once in his life a boy like me
Could end up coming first!

- Allan Ahlberg


Teacher, teacher tell me true,
Tell me what I ought to do!

Teacher, teacher, where’s my book?
Tell me where I ought to look!

Tell me what to feel and how to think,
When to eat and what to drink.

Tell me what is good and what is bad,
When I’m happy and when I’m sad.

Tell me, tell me what to do,
Tell me, tell me what is true.

Make me learn and make me know,
Watch me closely as I come and go.

For I am small and I am weak,
Without your permission I cannot speak.

I cannot learn except by your decree,
Please, I beg you, give knowledge to me.

I am stupid and you are bright.
I am wrong and you are right.

I am bad and you are good,
I must do what you say I should.

Oh, teacher, look what you have done!
I don’t believe I’m anyone.

Oh teacher, teacher, can’t you see!
Look at what you’ve done to me!

- Cole (1972)
Today, the vast majority of our children have the good fortune of being taught by enthusiastic and sensitive teachers – it remains one of their basic entitlements.

Feedback from one of the attenders:

What a fantastic Family Weekend, something for everyone, even me!

This was the first time I have attended the family weekend, I came along with friends and didn’t really know what to expect.

As a social worker I have an interest in Sturge Weber and hoped to gain information to take back to my colleagues in the children’s disability team. Well I certainly came away much more informed.

The speakers were excellent and I gained lots of useful information to raise people`s awareness of SW. But more than that I met some wonderful families. I was able to talk to people about their experiences and was moved to find so much support for each other amongst the group.

I have put together a short training package for my team
and hope to come along again to learn more. With many thanks, Gwyneth

Reprinted from Sturge Weber UK Newletter / April 2010