Aiming High Conference:

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

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

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

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

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

*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

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

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

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

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

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

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

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
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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

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

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.