Hunts Parent Carer Forum

Come to our talk!

2011-10-19T10:51:00.000-07:00

Many of you will be aware of Jane Horwood's exceptional skills in the diagnosis and treatment of sensory integration disorders.

Jane has worked with many schools to set up facilities and programs that help children with sensory problems. For many years she has run private therapy sessions in Peterborough that many of our children have benefited from.

At the family level she offers support and advice in overcoming difficult situations, such as interventions and therapies to reduce challenging behavior. More importantly she helps parents and professionals to gain an understanding of the sensory problems that may trigger such behavior.

She has given many presentations for us in the past, but this may be your last chance to experience her if she carries out her threat to retire next year.

The talk is on Wednesday 16th November from 9.30am to 2.30pm. This time we are using a new venue, Brampton Memorial Hall, and we will be providing lunch.

To book, please phone 01480 429618 or e-mail huntspcf@ntlworld.com and be sure to leave us a phone number so we can contact you quickly.

If you are a parent or carer, the fee is only £3.00. If you are a professional then the fee is £50.

Attendance by parent/carers at this event has been sponsored by Grassroots Grants, which is managed by Cambridgeshire Community Foundation.

Fun on a swing!

2011-07-27T07:44:00.000-07:00

Jane Crittenden has a son who loves to swing; and I mean REALLY swing! Take a look at the video.

The swing is a TP Giant Triple. It looks great to me, so, if you have a child who really needs to swing, Jane recommends this model.

National Autism Society Newsletter and Autism Show June 24-25

2011-06-17T13:53:00.000-07:00

"Like everyone else, I was deeply upset by the BBC Panorama investigation into abuse of vulnerable adults living at Winterbourne View, a private hospital in Bristol. Over 6,000 of you signed our petition calling on the Government to take action. Thank you. Simple actions such as this really do help to change things for the better for people with autism.

On 27 June we are launching our new campaign, Great Expectations, to highlight the huge challenges and frustrations that parents and children face within the current education system. The Government's special educational needs (SEN) and disability reforms will shape the future of a generation of children with autism. This is our opportunity to make sure they get it right".

You can support the campaign on 27 June by telling your MP why they must take action. For this, and other great ways to get involved, visit www.autism.org.uk/campaign

With my best wishes as always,

Jane Asher

President, The National Autistic Society

On June 24-25, The National Autistic Society will be a headline partner at The Autism Show, the UK's first national event dedicated to autism for parents, carers, professionals and people on the autism spectrum.

For the price of a £9 ticket you can access a huge range of in-depth discussions, practical workshops, interactive seminars, professional one-to-one consultations, as well as over 50 suppliers of specialist products and services.

Highlights will include:

The Autism Matters theatre, which will feature presentations from leading professionals, advocates, clinicians and people on the autism spectrum. Highlights include talks from Rt Hon John Bercow MP, Speaker of the House of Commons, Jane Asher, President of The National Autistic Society and Anna Kennedy, founder of Hillingdon Autistic Care and Support and the Daily Mail Inspirational Woman of the Year. Topics will include Transitions in Education, Autism in the Workplace, Navigating the Statementing Process, Sensory Perception Difficulties and Demystifying ABA.

The Workplace theatre, offering interactive sessions covering issues such as Supporting People to Reach Their Full Potential, Managing Challenging Behaviour, State Benefits and Allowances, Transition from Residential Care to Supported Living, Promoting Vocal Communication and Ensuring Proper Provision at a time of Cuts.

Autism Talks, in association with ARM, hosting enlightening presentations from people on the autism spectrum.

The Autistica Research Zone, where you can learn about the latest research developments in autism and discover how you might be able to help.

The Communication Matters Zone, where you can discover methods of communication which can be used to supplement the more usual methods of speech and writing. Suppliers belonging to the Communication Matters organisation will be exhibiting in this dedicated area.

One-to-one clinics where professionals including Speech and Language Therapists, Educational Psychologists, Behaviour Analysts, Occupational Therapists, State Benefit Advisers and Legal Advisers will be available for 20-minute consultations.

A special photographic exhibition called One in Ten will be showing at the event. This exhibition will display ten photographs of people with a dual diagnosis of Down syndrome and autism. Each image is accompanied by text written by their parents describing how they came to be diagnosed and how their autism affects them. The photographs were taken by Katye Brimacombe who has a 15-year-old son with Down syndrome and autism.

The Autism Show has been specifically designed around the needs of visitors on the autism spectrum, with fast track entry, extra wide aisles, high ceilings, dimmed lighting, clear signage, and a sensory room and quiet room specially created by Mike Ayres Design.

NAS members receive a discounted advance ticket price of £8. Contact our membership team to become an NAS member and receive the discount code. Please note tickets are not available directly from the NAS membership team.

Group discounts are also available for bookings of 10 people or more.

Book your ticket today and save 25% off the door price.

You can get the full newsletter by contacting newsletter@nas-autism.org.uk

Stay in touch with The National Autistic Society: follow us on Twitter, watch us on YouTube or join our Facebook group.

The National Autistic Society, registered office: 393 City Road, London, EC1V 1NG, United Kingdom.

Tel: +44 (0)20 7833 2299, Fax: +44 (0)20 7833 9666, Email: nas@nas.org.uk

MOBILITY ROADSHOW 2011

2011-05-20T05:33:00.000-07:00

- NEWS UPDATE

Not long to go now until this year's Mobility Roadshow at the East of England Showground, Peterborough, and as always we have a fantastic line-up of exhibitors and events for our visitors.Come and meet Derek Derenalagi, one of the British soldiers who provided inspiration for the birth of the charity Help for Heroes – who officially opens the show on 30th June. Plus on Saturday 2nd July – National Young Disabled Persons’ Day – we welcome local celebrities David Proud and Julie Fernandez.

Full details are on the Mobility Roadshow website at http://www.mobilityroadshow.co.uk/ where you can also find out the latest news from exhibitors to help you plan your visit. As well as an outstanding showcase of mobility products and services, advice and information from over 150 exhibitors, the Roadshow offers a fantastic array of activities, experiences and ideas for an active lifestyle. Check out these options while visiting the show:

See new concepts and products being shown in the UK for the first time.

Test drive a range of adapted and specialist vehicles. NEW FOR 2011: dedicated WAVs test drive zone

Meet expert conversion and adaptation specialists who can advise on your particular needs

Try out scooters, wheelchairs & trikes for safety & comfort

Go off-road with all-terrain wheelchairs and buggies

Enjoy the Cyclefest - handcycles, trikes and companion cycling for everyone

Try your hand at archery, laser clays, 4x4 experience, adapted go-karts, giant-scale Scalextric or Nintendo Wii

Participate in a variety of sports, dance and fitness activities in the Sports Arena

See how far you can go on the accessible climbing wall

Encourage the children to take part in the ‘Go Kids Go’ wheelchair skills training sessions

Plus some exciting new features for the show:

• Mobility Information Service (MIS ) – providing a central hub of mobility advice and information, plus ‘Meet the Expert’ sessions on a range of topics

• Design Zone – an open forum where visitors, designers and innovators can exchange views on the design of products for the mobility market, plus gain expert advice: come and have YOUR say

• Launch of our Photography Competition in partnership with the Disabled Photographers’ SocietyAnd as always, it’s a free event!

Click here to register for your free tickets.

We look forward to welcoming you to the show. JACQUI JONESExecutive Director, Mobility Choice Crowthorne Office: 0845 241 0390

MOBILITY ROADSHOW 2011: 30th June, 1st & 2nd July , East of England Showground, Peterborough

Mobility Choice (Registered in England & Wales) Crowthorne House, Nine Mile Ride, Wokingham, Berkshire RG40 3GA (Company No. 3501190 Registered Charity No. 1068018)Mobility Roadshow Ltd (Registered in England & Wales) Crowthorne House, Nine Mile Ride, Wokingham, Berkshire RG40 3GA (Company No.3596221 VAT No. GB-733458819) A wholly owned subsidiary of Mobility Choice. Tel 0845 241 0390 Fax 0845 241 2136 email choice@gtnet.gov.uk website http://inventivenet.co.uk/link.php?M=140829&N=360&L=13&F=H

A Right Royal Affair

2011-05-02T10:13:00.000-07:00

Its time to enjoy a bit of Bank Holiday fun. Since I have no news from the Forum this month, I've posted an event that some of you attended.

Our son Dan had his 17th birthday party on Sunday. As this was the week-end of the Royal Wedding the theme just had to be "A Right Royal Garden Party". We spent ages preparing props and costumes while Nick and Gabby made the invitations, but all the same, there was an awful lot to do at the last minute.

Having sprayed all the garden furniture gold and decorated the house and garden with flags and pictures, we all thought Sunday morning would be pretty easy: No pressure. The bouncy castle would arrive at 9 am and then Hanna planned a cooking session to make fairy cakes and that sort of thing, so we would have an easy run-up to the party which was to begin at 13.00 hours, precisely. All that I had to do was put copies of "The Tatler", "The Field" and "Horse and Hound" in the downstairs loo (Royal Privy, Royal Flush or Royal Wee?)

The huge bouncy castle duly arrived but it wouldn't fit in our garden, so the men took it away again! Now our plans lay torn to shreds at our feet. Hanna started phoning around for alternatives while we thought about what to do instead. Boules? (Lethal if you get one in the head). Croquet? (Have you seen what a croquet mallet can do?) Archery?? Perhaps not.

In desperation Hanna phoned the guys back and pleaded with them. They agreed to return in 30 minutes if we removed our rockery first. I have a bad back so my job was to manage Dan while Nick, Gabby and Hanna armed themselves with implements and plant pots and leveled the site, just in time.While all this was going on Dan was frantically signing to me. His sign was stroking his cheek which means "Pretty Lady".

Almost immediately, three very pretty girls on bicycles appeared at the door. They were Sophie, Kathryn and Holly and they were the answer to Dan's prayers and mine. I set them to work moving plants and laundry; the reward was to be a bounce on the castle.The rest of the guests arrived as expected between 1 and 2 pm. Dan mugged them all for presents on the way in, but didn't actually join in the party until he was sure they were all here and that he had extracted all the goodies. After that we settled down for a lovely party in the garden for the rest of the afternoon.

If you are still with me at this point you may be asking, "What happened to the Royal Garden Party theme"? Needless to say, based on past experience, we were all wondering what to expect from our neighbours, The Lambtons. They generally raise the bar when it comes to dressing up so we spent a lot of hours trying to guess what they would do: Security Men? Royal Family? Politicians? In the past it's been Star Wars, Super Heroes and Pirates.

This time it turned out to be "Nuns and Vicars" (Typical!) At least it wasn't "Vicars and Tarts" again. Actually they were supposed to be "Nuns and Bishops" but they were all out of bishops' frocks and Nigel had to come as a cardinal. (If you thought he was the nun, you obviously spent too long at sea!) If you are really current with the news you will know that nuns are HOT! There's a big debate about one of the nuns caught on video at the royal wedding who looked pretty fit and was wearing Reeboks. 'Word is that she is a "Ninja Nun" and head of security at Westminster Abbey, or possibly the head of MI6.

So how did we combat the Lambton challenge? Hanna out-trumped everyone by coming as HM Elizabeth II and I headed up the overseas VIP list as a Middle Eastern Ambassador, complete with sinister shades and a red fez which I sewed myself. I also sell rude post cards if you are interested.

We were so pleased to see so many people turn out for the party. The youngsters were a delight and they were so well behaved that Hanna and I managed to chat to all the grown ups. All of the presents were appropriate for Dan and so, thanks to Hanna, was the food; lovely cakes, jellies and ice-creams, all made without sugar.

Nick and Gabby did a fantastic job of decorating the house and acting as kitchen staff and waiters throughout. I think we might do it again next year.

I have enjoyed looking through our photos. A lot of them were taken on the iPod using a retro-style camera application.

You can see all of my pictures by clicking HERE and the Lambtons' pictures by clicking HERE.

Seminar for Parents

2011-03-07T02:52:00.000-08:00

The Parent Partnership Service Roadshow is coming to St Neots on Wednesday March 16th 2011.

The event is FREE and runs from 9.30am to 12.30pm at the Priory Centre.

The topics are :

Annual Review of Statements
Overview of Dyslexia
Cyber Bullying
Parenting Programmes

You have to chose which two you will attend.

I can't find any information on the PPS website so, if you are interested contact them as soon as possible.

Contact Bob Wilson 01223 699211 or e-mail: ppsadmin@cambridgeshire.gov.uk

Sleep Solutions Workshop. January 18th 2011

2010-11-02T07:10:00.000-07:00

It is estimated that 85% of children and young people with additional needs also have sleep difficulties. This can present in a number of different ways from night waking to issues with settling. Sleep deprivation can have a huge impact on the child’s level of functioning making it difficult to concentrate in school and often leading to behavioural problems. Lack of sleep can lead many parents into crisis resulting in them feeling exhausted.

Scope’s Sleep Solutions workshop provides innovative training, written by a trained Sleep Practitioner and endorsed by Sleep Scotland. The aim is early intervention and prevention through raising awareness of good sleep practice and basic strategies for parents during discussions with time to share ideas and resources.

This one day sleep workshop includes:

p Effects on the Whole Family p Why is Your Child not Sleeping?

p Keeping a Sleep Diary p The Bedroom Environment,

p A Good Bedtime Routine p Night Awakenings

p Useful Resources

Tuesday 18^th January 2011

The Meadows Community Centre,

St Catharine’s Road, Cambridge CB4 3XJ

9.30am to 2.30pm

For more information and to book your place contact Vicki on 0771 4853763 or email vicki@face2facenetwork.org.uk

For more information visit: www.sleepsolutions.org.uk

Thank you Cerebra!

2010-09-08T10:01:00.000-07:00

For the last week of the school holidays we have been staying at a Haven Holidayscaravan park in Caister, Norfolk.

Way back in the spring we applied to Cerebra (a UK charity for families like us: see previous blog below) for a respite holiday at their centre in Pembrokeshire, South Wales. They were overwhelmed with requests so they teamed up with Haven to provide holidays for those of us who didn't get in on the first round.

The site at Caister was the first caravan park in the UK, starting a trend that led to this strip of coast having the highest density of caravans in Europe.

Like us, you may have preconceived ideas about trailer park holidays, but I have to say, we had a great time and met people from all walks of life there. We used the swimming pool, theatre, shop and bike rental, and our caravan was fine, except for a badly stained carpet (due to multiple axe murders perhaps?)

Caister is also the site of a Roman Fort and a working fishing village. 'Worth a look. Offshore is a spectacular wind-farm that I found quite photogenic. Inland, there is the Norfolk Broads; a network of freshwater medieval waterways at sea level, created by peat-diggings for fuel.

We spent our mornings around the site swimming or cycling and our afternoons out on The Broads, boating or walking on boardwalks. Our grand-son Jake came along for the first few days. 'All totally delightful.

Meanwhile, back at The Ranch, our son Nick had our house and car to himself. No major damage, as far as we can see.

So thank-you Cerebra for a real holiday. We returned to work, school and all our usual problems, suitably fortified and ready for the Autumn Term.

You can see all the photos (a lot!) at Broads 2010 If you have any trouble, or indeed comments, e-mail us. Jim and Hanna Stevenson.

Cerebra

2009-11-23T14:10:00.000-08:00

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

2009-10-28T13:27:00.000-07:00

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

2009-10-25T14:04:00.000-07:00

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

2009-09-06T02:31:00.000-07:00

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

2009-09-06T02:15:00.000-07:00

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

2009-09-06T00:56:00.001-07:00

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

2009-06-17T11:25:00.000-07:00

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?

2009-03-02T12:21:00.000-08:00

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!

2009-03-02T12:13:00.000-08:00

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

2009-01-19T12:18:00.000-08:00

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.

Aiming High Conference:

2008-12-01T01:34:00.000-08:00

Wednesday 10th December 2008 at 10am – 2.30pm
Venue: Eastern Leadership Centre, Pampisford, Cambridge

Aiming High & Parent Participation:
A day for parents and professionals to find out about

- the Aiming High program and grants for parent participation
-the development of parent carer participation
- how different parent forums are structured, including Norfolk Family Voice
-how the grants are being used to develop parent participation

Parents and professionals will talk about how they have worked together to make parent participation a success. There will be the opportunity to meet people from different local authorities across the East region and find out how parent participation is working there.

This will be an informal event for parents and professionals run by Together for Disabled Children, a partnership between Contact a Family and Serco, set up to support the national implementation of the Aiming High programme for short breaks and parent participation.

Booking Send the completed booking form to: Kate Johnstone, TDC Programme Admionistrator, Contact a Family, FREEPOST LON8801, London EC1B 1EE
We ask for a £5 deposit cheque to secure your place – this will not be cashed but returned on the day. If you are unable to attend please let us know - we will only cash your cheque if you don’t let us know.

Booking Form

Yes I would like to attend the East of England Region Parent Participation day on Wednesday 10th of December – please book me a place. I enclose a cheque deposit for £5 made payable to Contact a Family. I understand this will be returned to me at the event. I will let Contact a Family know if I find I am unable to attend.

Name ___________________________________________________________

Address__________________________________________________________

____________________________________________Postcode_____________

Telephone________________________________________________________

Email____________________________________________________________

Parent Forum or participation group (if any) you are involved in:

_________________________________________________________________

Local authority area_________________________________________________

Job title (if applicable)_______________________________________________

Do you have any special dietary or access needs?

________________________________________________________________

Return this form and returnable deposit to:
Kate Johnstone, TDC Programme Administrator, Contact a Family, FREEPOST LON8801, London EC1B 1EE
If you would like to come but can’t send a cheque please contact Kate Johnstone on
020 7608 8783

Parent stress; opportunity

2008-11-05T12:54:00.000-08:00

Sue Green sent this in last month. Check it out.

City University
London

Support for Mothers September 2008

My name is Lisa Greenspan and I am offering an opportunity to all mothers with a child with special educational needs to attend two one-hour sessions aimed at helping you to cope with the stresses of everyday challenges that may arise with your child. In the past, support has often been directed mainly at the child, and the parents’ feelings and thoughts can sometimes be overlooked.

This is part of my DPsych in Counselling Psychology research into the support needs of parents of children with special educational needs. Taking part in the research is completely voluntary, meaning that you do not have to take part. Also, if you agree to take part you can withdraw at any time. Any information that you give will be treated as highly confidential and anonymous. No one could ever link you personally with this research.

You will be invited to attend two groups or individual sessions and I will travel to a location suitable to you. I will also send you a short form before hand, asking you a few questions about your child’s behaviour.
If you are interested in finding out more information, please contact lisa.greenspan@gmail.com

Using Applied Behavioural Analysis with Children and Young People with Autistic Spectrum Condition

2008-11-03T13:30:00.000-08:00

11th November, 2008 7.30-9.30pm
Spring Common School, American Lane, Huntingdon
£3.00 on the door

Dr Anderson is an expert in ABA which involves breaking skills down into small components. ABA teaches people with autism how to learn and develop relationships as well as making learning fun. She has 30 years of experience in health, special education, and social services with both children and adults with cognitive differences. This talk will be of interest to parents, carers, and professionals.

If you would like to attend please e mail huntspcf@ntlworld.com, or phone
01480 420617/8 .

This event is almost full, so don't delay.

Conference News

2008-09-07T03:06:00.000-07:00

ASSERT (Angelman Syndrome) held a wonderful Conference (their 5th) at Loughborough University from September 5th to 7th. We were only able to attend on the Saturday, but it was an uplifting experience and we learned a few things that are relevant to all of us who care for a child with Special Needs.

Stick with us; we will not give you a blow-by-blow account, just the interesting bits!

1 Our first session was on Behaviour in Children with Angelman Syndrome (AS), presented by Chris Oliver from the Cerebra Unit at The University of Birmingham. Their psychology students and staff conduct research on what causes children with particular genetic disorders to behave in a characteristic manner. To put it simply, damage to the genetic code on a specific chromosome (15 in Angelman Syndrome) lead to abnormal development of a specific part (or parts) of the brain. We can get you a DVD on this if you are really interested.

Chris used complicated charts but kept our attention with humour and short videos to explain that children with AS display excessive sociability. All of us are born programmed to turn on our 'magic beams' so we can bond with our Mum and get fed. The inhibitor that gradually turns down this behaviour in childhood is inherited from the maternal gene of chromosome 15 Kids with AS either lack this gene altogether or it is switched off by the paternal gene. Anyway, rather like a drunk at a wedding, they indiscriminately turn on their charm all the time with a big smile and a wave. Mostly they get a smile and a wave back and they are happy.

However, if you refuse to interact with a child who has AS, they will try almost anything to get the positive attention they crave. A classic example might be when two adults are talking to each other while supposedly supervising a child with AS. The child turns on a big smile and no one responds, so he pulls hair. The adult turns to the child and says "That hurt!" and the child laughs. It is quite natural for the hurt person to think that the child with AS takes a delight in hurting other people, but the truth is, he takes a delight in getting you to look at him.

We talked about ways to manage this "excessive sociability." The key point is that you cannot turn off the need for a high level of social interaction in the child with AS, you can only train him to be more appropriate in the ways he seeks attention. One of our regular carers said "So, it's like Autism in Reverse". Children with AS have a very strong need for social interaction, but very limited skills to obtain what they need. Their lack of speech is a double disability in this respect.

2 Funding is always a good topic. Our second session was led by a campaigner called Steve Broach from Every Disabled Child Matters http://www.edcm.org.uk/ We should all be familiar with the Every Child Matters campaign, but it left disabled children out in the cold. EDCM fights to get the needs and human rights of our children met through legislation and funding. From 2007 to 2011 there will be more money that is ring-fenced for local authorities to spend as follows.

£5 million for parent forums

£35 million for childcare

£19 million for transition to adulthood

£370 million for short breaks.

Hunts Parent Carer Forum will try very hard to find out what is happening to this money in Cambridgeshire and tell you how to access it. Watch this space!

3 We attended two afternoon sessions on Transitions, both led by parents who had been through the process. These sessions were absolutely wonderful and moving for us, showing the light at the end of the tunnel. The bad news, much repeated, is "You have to fight for everything and not take No for an answer." Our children will all end up in some sort of assisted residence without us. We need to prepare for this very early. For the move to college we should start looking at the options before the age of 14 and get our child's name on the waiting list. You have to look at the local provision first but, if you can show it is not suitable for your child, it is possible to send them elsewhere. The discussion on this topic was led by Ruth Brennan who lives in Cambs but whose son Patrick attends a college in Kent. When asked what Patrick was studying at college Ruth replied "He is studying the Abolition of Slavery, he has to do things for himself!"

After College, at 22 or 23 years old, Patrick will have to find himself a home. Ruth, of course is working on this now, but Ben Robertson from Herts has already moved into his house in Northamptonshire. He actually helped his Mum give the presentation about his new home where he lives with his friend Luke and a small team of carers. Ben is a total star. He attended the whole day of lectures. His package is managed for him by Mencap but he still doesn't have his full team of carers organised. It's hard to get the right people so parents still step in to fill the gaps. The most important aspect of the presentation was that it is really Ben and Luke's house. They chose the furniture, they make a lot of decisions and they signed the contract with their local housing association. A special contract was prepared using symbols. Ben keeps a photo/video diary so we saw a lot of the things he was talking about with the aid of AV equipment, his talk-box and his Mum. Of course, it was hard work to get all this organised and to get the funding in place.

In the breaks there were the usual trade stands to examine, including Fledgelings (see our Hunts PCF links page). 'Always something new there. We find it impossible not to buy something. There was one man who made giant cots for big kids and one who made excellent tricycles. William Macgregor at Sam. Pepys' School has one of them. We looked at Sensory Room equipment and communication devices but a couple of new stands caught our attention.

Safespaces http://www.safespaces.co.uk/ are based in Lancashire. They make a rectangular tent-like room which you can easily assemble indoors. They can be used as sensory rooms, or for sleeping, or just for privacy. They are designed to keep your child (or an adult) safe and comfortable. I tried to turn one over and could not. I could see a use for these in schools and respite centres, as well as at home. Check them out.

Cerebra http://www.cerebra.org.uk/ is a charity for Brain Injured Children and Young People that offers information, advice, grants and training. They also offer distance-learning courses that equivalent to GCSE's and a postal lending library. Their stress helpline is 0800 328 1159 and you can e-mail them at info@cerebra.org.uk They have now set up a research unit on behaviour at the University of Birmingham (see above).

Jim and Hanna Stevenson

C.A.N. Network Lunch

2008-09-04T11:31:00.000-07:00

Children with Additional Needs (CAN) Network Lunches provide an informal opportunity for professionals working with parents and carers of Children with Additional Needs to share information.

Programme
Tuesday 16 September
12.30 – 1.30pm

Anita Hewson
Team Leader Additional Needs Team Social Care

Wendy Turner
Early Support Coordinator
Wendy will give an update on Early Support

Plus
Sharing ‘News and Views’

Venue: Seminar Room 3. 2nd Floor, Oak Tree Centre, Huntingdon PE29 7HN

Please encourage your colleagues to attend*

NB Bring your packed lunch…drinks will be provided!

*RSVP to Joan Adamson: : UJoan.Adamson@Cambridgeshire.gov.ukU or (01480 375515

Little Stars

2008-07-05T03:11:00.000-07:00

*Little Stars*
Preschool Group for Children with special needs and their parent/carers.

· Sensory Room
· Soft Play Room

Held at Spring Common Lower School
American Lane
Huntingdon
Wednesdays in term-time
9:45 -11:45
Free refreshments

Contact: 0800 027 8780
Or Just Turn Up!

Disability Sports Festival

2008-07-02T12:19:00.000-07:00

Sunday 6 July welcomes back the Huntingdonshire Outdoor Disability Sports Festival. This free event organised by Huntingdonshire Disability Sports Forum, aims to give disabled people the opportunity to take part in a variety of sports all on one day.

This year’s event at the St. Ivo Outdoor Complex, California Road, St. Ives promises to be even bigger than the last with the addition of some new and exciting sports. For the first time we will be featuring a climbing wall and mini squash. There will also be many other sports including football, tennis and cricket.

Participants wishing to attend the festival would need to come in appropriate clothes for variable weather conditions, bring plenty of drink and a packed lunch. Carers and families are welcome to come along and join in, activity spaces permitting.

In order to attend the festival you will need to complete a booking form by Friday 13 June, booking forms are available using the link on the right or call David Reeve, Community Sport and Recreation Officer, 01480 387098

There are also a variety of other opportunities for disabled people of all ages to take part in sport, including a comprehensive summer holiday programme. For more information, contact David for a leaflet or visit Leisure Development web page by clicking here

Summer Holidays are coming

2008-07-02T11:59:00.000-07:00

This summer there is no excuse for children to be bored during the school holidays. ‘Summer Fun 2008’ is an essential 32 page guide which answers every parent’s questions about how to keep their children active and entertained.
The Leisure Centres in St Ives, Huntingdon, St Neots, Ramsey and Sawtry have all teamed up to bring you a packed programme of sport and leisure activities for all ages, abilities and interests so everyone will find something to enjoy.
Children aged 5 to 12 can attend any of the popular kids holiday clubs where they will enjoy swimming, sports, games, art & crafts, cooking and other exciting activities. Full and half day sessions are available from only £2.11 per hour which represents excellent value for money. The holiday clubs are registered with OFSTED and provide a fun, caring and exciting environment with experienced CRB checked staff supervising all activities.
Sports enthusiasts as catered for with a wide range of courses for children and teenagers, led by qualified coaches. You could learn new football skills, bounce on the trampoline, be an ace at tennis or even create your own cheerleading dances.
In the pool you can help your child improve their swimming confidence with crash courses available for 3 year olds and above. There are also exciting water courses including jet skis, snorkelling, synchronised swimming and lifeguarding.
If you just want to cool down, you will find swimming sessions for children and families to enjoy. Swimming is great value as a single session at only £2 for children and £3 for adults. Children under 5 can swim completely FREE and family swim passes are available which entitles two adults and two children to swim for only £9.40.
Kids who want to get creative and messy will love the cookery and arts & crafts sessions. All equipment, ingredients and materials are provided and parents don’t have to worry about clearing up. Most importantly, children will have the satisfaction of making something on their own.
Advance booking is required for most activities so you are advised to book early to guarantee the activity of your choice.
A copy of ‘Summer Fun 2008’ is available from your local Leisure Centre, Primary School, Library or can be downloaded from Here

A Talk about Autism by Richard Exley

2008-06-02T15:59:00.001-07:00

Monday, June16, 2008 7.00 – 9.00 pm
at Spring Common School, Huntingdon.
Cost: £3.00 per person

If you are curious to gain insight into autism, then you mustn’t miss this talk. Richard Exley is a young man with Asperger’s Syndrome. In addition to his own experience of Autism, he has worked to help improve understanding, and to create policy and legislation about autism for many years. Richard also supports others with autism, as well as acting as a ‘named person’ and expert witness.

His talk will cover a range of topics including aspects of stress, anxiety and coping mechanisms.

Please phone us or e-mail to register your interest.

Sexuality Workshop Session 1 May 15th

2008-05-17T07:47:00.000-07:00

The first of our two workshops on sexuality was held on Wednesday at Spring Common School. It was well attended and useful, and really good fun. The course is about the sexual development of children with special needs, how to cope and how to help. The objective of the first session was to provide a framework for discussion so that issues of interest to the group could be covered in more detail at next Wednesday's session.

The ice breaker was a lot of fun and I think we all learned a few new slang words and euphemisms for bits of our bodies and the things we do with them, given half a chance.

We learned about sexual behaviour and the law, sexuality and autism, normal sexual development and we found time to follow up a few issues raised by the Forum.

Mike O'Sullivan and his team brought along quite a few props and leaflets to help. We were all quite intrigued with the two anatomically correct dolls "Rosie and Jim".

"Fancy a Danish Roll"? .."No thanks, I'm watching the telly"

Newsletter coming soon

2008-04-29T13:42:00.000-07:00

The next newsletter is on its way, but you still have time to send in any items you want included. We are desperate for pictures. these can be artwork or photos.

Just to cheer you all up, here are some pictures from children in the group. Oliver made the top one and Dan made the one below.

Second hand stroller

2008-03-26T07:25:00.001-07:00

We have this big Convaid Cruiser stroller that we took on one trip to the USA and have hardly used since. If you are looking for a large stroller for your child. talk to us first. They are incredibly expensive when new. jim.stevenson2@ntlworld.com

Conference news

2008-03-25T04:41:00.000-07:00

This conference is coming up in London. If you are interested you can fill in the booking form below.

To return to http://www.huntspcf.co.uk click on the link.

ANNUAL GENERAL MEETING
PARENTS & TEACHERS CONFERENCE 2008
SATURDAY, 14 JUNE

AGENDA

10.00 Registration, Tea, Coffee & Exhibition of Resources

10.30 Annual General Meeting

11.00 Lois Addy, Senior Lecturer at York St John University
‘Improving the attention/concentration of children with DCD in the classroom using sensory regulation’

12.30 Lunch, Networking & Exhibition of Resources

13.30 Gill Dixon, Independent Special Needs Advisor
‘It ain’t Rocket Science’

15.00 Afternoon Tea & Exhibition of Resources

15.15 Special Guest, Liam Plumridge, youth with dyspraxia
‘Beyond Boundaries: A Dyspraxic Journey’

15.45 Raffle & Close

Dyspraxia Foundation AGM/Parents and Teachers Conference 2008
I wish to book ______ place(s) for the AGM/Conference
Name(s): _____________________________________Membership No.____________
Organisation: __________________________________Profession: _______________
Address: _______________________________________________________________
_______________________________Post Code: _________Tel No: ________________
Email: _________________________________________________________________
I enclose a cheque/postal order, £55 Professional / £45 Parent
payable to: Dyspraxia Foundation (DF members deduct 10%) £_______
Please invoice my organisation for £___________
Please debit my credit card: Master Visa Switch/Solo for £_______
Card No______________________________Expiry date ___/___Card Issue No______
Signature ____________________________________Date______________
Do you require special dietary provision Yes/No
Please give details________________________________________________________
Cancellation Policy
Cancellations received in writing no later than Monday 26 May 2008 will receive a full refund less £10.00 administration charge. No refunds are possible after Monday 26 May 2008. Substitutions are welcome at any time; however an administration charge of £5.00 will be levied
Data Protection
The personal information provided by you will be held on a database. It may be used to keep you up to date with future events or developments in the field of dyspraxia. We will not disclose this information to any other person or organisation.
Closing date: Friday 30 May 2008. Please return to: AGM & Conference 2008,
8 West Alley, Hitchin, Herts SG5 1EG or Fax: 01462 455052
Registered Charity No 105835 A Company limited by guarantee. Registered in England No 3256733

We need football boots

2008-03-20T01:43:00.000-07:00

A friend of mine from Buckden is working to support a village in Uganda. They have asked us to send football boots (all sizes) to get a team going. If you have any kids or adult boots, please get them to Hanna or Margaret, or drop them off at Paxton Pits Nature Reserve. Thanks.

Jim Stevenson

Welcome to the News page

2008-03-12T15:08:00.000-07:00

This page is where you can come to find all the latest news about the Forum. You will be able to scroll down through the postings to see old ones.

If you have news items and pictures, or even videos for this page, please e-mail them to huntspcf@ntlworld.com

I've posted this page just so you can see what it will look like. Here's a picture of our son Dan with his big brother Nick to be going on with.