Cerebra

We were sent this letter recently: I visited the site and it looks useful and a attractive. See for yourself! Jim Stevenson.

Dear Parent/Guardian,
Cerebra is redesigning our children’s corner and web pages, and over the coming months will be re-launching the club with a new look and facilities for use by your child and their siblings.
Current plans for the site include: a range of online games, jokes, puzzles, general information and competitions. This area can be found at http://www.cerebra.org.uk:81/Kidz/.
We want to make the club as interactive as possible. In addition to the website we will be sending out quarterly newsletters and activity books for your child to work through and colour. They will also receive birthday cards and presents every year until their 16th Birthday and Christmas cards and presents each year.
However to fully achieve our vision for this new club, we are asking if parents/guardians if they would like to sign their child up to join the Children’s Corner. We encourage all children to participate in this new club. If your child has a sibling who you feel would enjoy being part of the club please inform us, and provide us with their details, in addition to the details of your registered child. Enclosed with this email is a welcome letter and a membership form, could you please take the time to complete and return to Cerebra at our freepost address.

Childrens CornerCerebraFreepost SWC3360CarmarthenSA31 1ZY

As this is a new venture for Cerebra, we are very keen to obtain feedback on how you feel the Children’s Corner will benefit your child and any new ideas you may like to be included.
In anticipation, we take the opportunity to say thank you for allowing your child to participate. We hope your child enjoys their new area and look forward to hearing from you.

Yours sincerely,
Rachel Shailer


Rachel Shailer
Education Co-ordinator - Research

Email: RachelS@cerebra.org.uk
Tel: 01267244225

HPCF Concert Bury

Hello Wembley...well almost. Saturday night was music night for HCPF. The Hurstingstone Singers delivered a rousing performance at in Bury Church on Saturday (24th October).

The miscellany of music covered over half a millennia with choral ditties from Agincourt right up to sing-a-longs from the Beatles. The wine in the interval certainly helped my vocal chords!!!

Off course the monies from ticket sales will go toward the many activities planned for the next year, and to produce more up to date leaflet. Thanks to everyone for turning out on a dark Autumnal ( which added to the atmosphere actually).

iPod special

Our son Dan, who has Angelman Syndrome, can't talk but communicates with signs, sounds and gestures, and with £6,000 of heavy tablet computer produced by PRC, called a Vantage. We think this is a scandal as it's not exactly state of the art.
The newest model looks like this (left). Dan's is older.
The good news is that there is now an application for the iPod touch that enables it to be used as a similar device. The cost, including software, iPod and case with speaker, is not much over £300. Guess what Dan is getting for Christmas!

There is a website at http://proloquo2go.com/

Crossroads AGM

Networking Event
and Lunch
Hear about things happening for carers
Friday 2 October 2009 12.00-14.00hrs
followed by
Annual General Meeting
14.00-14.30hrs
Hemingford Abbots Village Hall, PE28 9AH
12.00hrs Lunch and Networking
12.30hrs “What we’re doing for carers” - in the
region, in the county and in Crossroads
14.00hrs Annual General Meeting
Speakers:
Sally Bassett Deputy Chief Nurse NHS E of England
Val Selby Carers Strategic Development Manager,
Cambridgeshire County Council (CCC)
Fred Yeulett CCC Cabinet Lead for Health & Wellbeing
Carers stories
RSVP by 18 September 2009
Telephone 0845 241 0954
Email care@westangliacrossroads.org.uk

The BIG Event

The BIG Event
30 September 2009
Marriott Hotel, Huntingdon

Do you work with children and young
people?
We are looking for one person from every
team across children and young people’s
services & every sector to attend:
During this event you will hear about:
 National vision on the children and young people’s
workforce
 What is happening in Cambridgeshire to support you,
as professionals, working with children, young people
and their families
 Contribute to workshops, which will develop your
practice in relation to:
 The language we use
 HOW we work together
 WHAT we can do to work better together
 How leaders and managers should be supported
 Making induction better
 How to prepare people to move into more senior roles.

If you can come, there is the booking form which you can get from:

Stevie Varrall, Training Co-ordinator, Workforce Development Team
Children and Young People’s Services, 7 The Meadow, Meadow Lane, St Ives, Cambs PE27 4LG 01480 376565 Stevie.Varrall@cambridgeshire.gov.uk

Paddle for charity

It's strange what comes into your head at three a.m when you are supervising your son's art session in the kitchen after giving him breakfast at 2.15. (Murder? Sedatives? Ed.)

My son Dan, who is 15 years old and attends Samuel Pepys Special School in St Neots, has a rare genetic disorder called Angelman Syndrome (AS), caused by an error on chromosome 15 and resulting in severe learning difficulties, sleep disorder, epilepsy, challenging behaviour and lack of speech. It was once called Happy Puppet Syndrome, because people with AS generally have a happy, smiling disposition (or it's the end of the world and they are inconsolable) and they have co-ordination problems.

Through genetic research, such as the human genome project and the work of Harry Angelman himself, we know a lot about the causes of Angelman Syndrome, but, for parents, teachers and carers, all this is a bit academic and we have to take all that as a given. We need help to understand and cope with the symptoms of the condition and to give our children the best opportunities for a long, happy life. There are many hurdles along the way.

In the UK we have found the Angelman Syndrome Support, Education and Research Trust (ASSERT) http://www.angelmanuk.org/ to be really helpful. Every two years they organise a national conference at Loughborough University where we meet other families and attend lectures, exhibitions and workshops. This month we will attend a regional get-together in Hertfordshire.

My fellow rangers and the volunteers at Paxton Pits are well aware of Dan's condition and the effect on me. I often have to come to work late or leave early and I'm always tired and so it has an effect on them too; more work, but instead of complaining, they have decided to help by raising money to promote awareness about Angelman Syndrome and to give support to parents, carers and teachers. I'm extremely proud and grateful.

Two of our rangers, Matt Johnson and Matt Hall volunteered to paddle my Canadian canoe from Bedford to Ely, and the rest of the staff, visitors and volunteers put up the sponsorship. The target is £600; roughly £10 a mile. They completed the trip this week, in 4 days, so it's time to pay up! The money will go to ASSERT.

I saw the lads on Friday, looking a bit stiff and grizzly (so no change there.) They have survived. They have conquered the thundering cataracts of the Great Ouse and reached safety at last. I don't think they can stand up straight yet though. Sitting down also seems to be a problem.
You can still contribute by going to our on line sponsorship form, www.justgiving.co.uk/mattandmatt

ALL BEHAVIOUR IS COMMUNICATION

A Workshop Session with Joan Riddel, Educational Psychologist on Tuesday, 23 June, 6.30 for 7 pm, at Spring Common School, Huntingdon.

How can parents and carers of children and young people with disabilities read the messages and act on them?
This is a workshop session where the speaker will address the issues and concerns of parents and carers attending.
A short AGM will precede the workshop and light refreshments will be provided.
Please phone or e-mail to register your interest.
Cost £3.00 per person at the door.

Are you the parent of a disabled child?

From Pinpoint and Young Lives
Want to get together with other parents and get your voice heard?
Join us for the first meeting of a new county-wide parental involvement network for parents of disabled children
Parental involvement network meetings

Cambridge: Meadows Community Centre, 1 St Catharine’s Road, Cambridge CB4 3XJ on Monday, 9 March 2009 from 10am–12 noon (Refreshments from 9.30am)

Ely: Cathedral Centre, Palace Green, Ely CB7 4EW on Wednesday, 11 March 2009 from 10am–2pm
(This event is planned with Contact a Family and includes lunch)

Huntingdon: Maple Centre, 6 Oak Drive, Huntingdon PE29 7HN on Tuesday, 17 March 2009 from 10am–12 noon (Refreshments from 9.30am. This event is followed by lunch and the pinpoint Open Meeting from 12.45-2.00pm)

This term’s big question: Is Cambridgeshire Aiming High for Disabled Children?
Guest speaker: Richard Holland, Development and Commissioning Manager for Aiming High at Cambridgeshire County Council will talk about the Aiming High for Disabled Children programme and the money available for short breaks
· £10 voucher for every parent/carer who attends as a “thank you” for giving up your time

· help with childcare and transport costs is also available - please ask for details when booking

To book your place phone Lynn on 0751 741 9761 or email lynn@pinpoint-cambs.org.uk*
If you can’t attend any of the launch events, you can still have your say. Phone 0751 741 9761 for more information.
*Please let us know when booking if you have any special access or dietary requirements
www.pinpoint-cambs.org.uk

Slime!

Messy play is a very good therapy for all children, but especially good for children with sensory integration problems. Our son, Dan, used to hate sand and fur and had a bit of a fascination about hair. I'm sure that playing at the garden table with bubbles, play-dough and slime has helped him. It's also been a lot of fun. It can be a bit of a challenge to tidy minded parents though!

Because it has been a bit bracing outside, we have given messy play a bit of a rest. However, we have a couple of young teenagers who come and play with Dan on Tuesdays after school, and they seemed appropriate and deserving characters for a bit of "creamy muck-muck". Holly is a very good girl and is in no way to blame for what happened, but I'm not so sure about Sophie who is a real prankster. We love them both, of course.

When we had snow, the girls brought a big bowl of it in to the living room for Dan to play with. He spooned it from one bowl to another, then I added some food colouring (not yellow), and a new idea was born.

This week, we decided to risk an in-door messy play session with slime which is made with corn-flour (corn-starch) and water. You pour some cornflour in a bowl and then add a drop of water at a time until you get a runny paste. You can add colour too. The fun starts here because it behaves as a liquid unless you surprise it by grabbing it or hitting it. It becomes a solid, just for a moment. You can pummel it into a ball, but as soon as you stop moving it it flows again.

So, Dan played with slime at the sink while the girls experimented with different additives, such as Gelli Baff in a bowl on the floor. The idea is to enjoy handling the stuff, but the girls tried its many properties, such as adhesion and opacity, on all the surrounding surfaces and any handy objects. Then they tried paddling in it. This could become a family tradition but, perhaps it would be best in the garden?

The Final Frontier at the National Space Centre

You wouldn't believe how BIG space is. You think it's a long way down to the chemists, but that's nothing compared to space.
Today, our mission was to boldly go, boldly, where no-one else has boldly gone before, again.

You see, this morning Dan watched a programme called "Only in America" that included a visit to NASA. He signed "Me, Me, Me!", and so, instead of sorting out the garage (an annual event) we went to the National Space Centre in Leicester (for non-Brits, pronounced Lester).

For grown-ups it's a very confusing place. In fact, its confusing just getting there as Leicester is a sprawling mess and the by-pass consists of an infinite number of traffic lights and round-abouts. However, the tourism people have put up lots of brown signs with rockets on, so you more or less end up at the Space Centre, even if you were really going to Loughborough. It's a different matter getting away as the signs still point to the Space Centre, as though it was at the centre of a black-hole. No matter can escape, not even light.

Kids don't find it at all confusing. You just run around randomly pushing every button in sight. Something will happen, and, if not, you just push the next button or wind the next handle.

Grown-ups want the toilets and a cup of tea; kids just go berserk. Space is infinite and we only have three hours to see the universe. And it's not just the universe we see today, we want to go from the Big Bang to the Infinite Silence and back again by five 0'clock (17.00 space time).
You think re-cycling is new? We saw stars go super-nova and explode all over us, then the dust and energy clumped up to form; guess what: Stars.

We saw spacemen, satellites, planets, stars, moon rocks, rockets; you name it, and it still, wasn't enough. We had to drag Dan away after 2 1/2 hours and he hadn't had a pee or a drink. We tried to coax him into the cafe, but he didn't care. He wants to be an astronaut.

In the car we ate our space food (freeze dried strawberries) and experienced weightlessness as I drove over roundabouts at 80 mph to get back for our child-minders, an hour late. But, hey, time is relative, isn't it? After our experience with the black hole, its just amazing we are still in the same galaxy! Perhaps we are in some parallel universe where I am younger, and even more handsome.

Isn't space travel wonderful?

Look at http://www.spacecentre.co.uk/ to find out about the National Space Centre.