Supporting people with Cri du Chat Syndrome and their families

Family Weekend

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Friday 6 to Sunday 8 May 2016

Venue: Ramada Hotel, The Butts, Earlsdon, Coventry, CV1 3GG

The 2016 Cri du Chat Syndrome Support Group Family Weekend is being held in Coventry, in May! Join us at the Ramada Hotel for a weekend of sharing, learning, meeting up with friends, and laughter!

Our family weekend this year is focused on collaborative discussion and workshops. We want you to share your experiences with other families, and help each other out. After all, you are the experts! See below for the full schedule, and a bit further down for details of the workshops we’ve got lined up.

Schedule

Friday 6th May

15:00 Check-in and Event Registration open. Visit the CDC registration desk in the lobby after you have checked in. Onsite parking is available at £6.50 for 24 hours.
18:00 Welcome meetup in the bar. Join us to meet other families and the charity committee. If this is your first family weekend we will make sure you are introduced to everyone!
17:00 Buffet dinner - first sitting
19:00 Buffet dinner - second sitting

Saturday 7th May

09:00 Children’s day trip registration & carer meetup
09:30 Start boarding coach for day trip
10:00 Coach departs
10:15 Welcome - James Smith
10:20 Research update - Caspar Hull & Damian Haywood
10.30 Keynote: Forever Savvy - Angie Stokes
11:15 Refreshments
11:30 Workshops (exact schedule TBC, see below for sessions)
12:15 Workshops (exact schedule TBC, see below for sessions)
13:00 Buffet lunch
13:55 Raffle Draw - Jamie Sparkes
14:00 AGM - James Smith
14:15 Workshops (exact schedule TBC, see below for sessions)
15:00 Workshops (exact schedule TBC, see below for sessions)
15:45 Refreshments & open discussion forum
16:30 Coach returns with children & carers
Evening No meal provided, but there are plenty of restaurants nearby, or the restaurant in the hotel will be open. Most families tend to meet up in the bar area for the evening.

Sunday 8th May

11:00 Check-out. The hotel have provided luggage storage on the first floor if needed. Please ask one of the committee members for more details.

Twycross Zoo Day Trip

The children are visiting Twycross Zoo during the day. Most families are sending a family member or known carer with their children, but if you do not have anyone going with your children, then a few carers are being provided. If you need a carer for your children and have not spoken to Lucy about it, please get in touch as soon as possible.

09:00 Children’s day trip registration & carer meetup
09:30 Start boarding coach for day trip
10:00 Coach leaves hotel
10:40 Coach arrives at Twycross Zoo. When you arrive you will be greeted at the coach bays by a member of guest services who will give you your wristbands and maps.
  Explore the zoo! You may stay with the group or go on your own, the choice is entirely yours!
15:30 Return to coach. DO NOT BE LATE!
15:40 Coach leaves Twycross Zoo
16:30 Coach arrives at hotel

Changing Facilities

The zoo does not have a Changing Place but does have a first aid room that should be suitable if changing facilities are required.

Lunch

Lunchboxes will be provided for the children at registration.

Workshops & Talks

Keynote Talk: Forever Savvy

Angie Stokes and Amanda Phelps

There are lots of ‘babysitting’ services out there for adults with special needs, but as parents we both think that our adults should be spending their time constructively, gaining skills and not just being occupied.

Forever Savvy allows trainees to learn new skills which are transferable to voluntary or paid employment. They gain the ethics of working and doing what needs to be done not just what they want to do, they learn about timekeeping and doing a job to a required standard. To all intents and purposes they are going to work when they come to Forever Savvy.

When they are ready (and for some that may be years away), we look for suitable placements for them in the area which they would like, and are capable of working in. Forever Savvy then acts as the agent between the company and the trainee and supports them in their work placement for as long as is needed, ironing out any problems before it becomes too big that the relationship breaks down.

Forever Savvy is funded by the trainees personal budget whilst on the farms or in work placement. It is a positive risk environment, meaning that not much is a no-no and supervision is given at all times.

Workshop: Makaton

Helene Elia

What is Makaton? How and when can you use it? This session will teach about 20 basic signs and symbols to help communication with your children, as well as offer space for general signing questions and discussion. The workshop will run multiple times through the day, so if you cannot make one, there should be another opportunity. Helene will also be available throughout the day to talk with parents and offer ideas and suggestions to help them move forward with their child’s or young person’s speech, language and communication needs.

Helene is a Specialist Speech and Language Therapist (SLT) currently working for Birmingham Community Healthcare NHS Foundation Trust. She works with children from birth until they leave full-time education and specialise with children who are deaf or have hearing impairments. She also works in community clinics as well as with preschool children with special needs. She is a licensed Makaton Regional Tutor and has been teaching and using Makaton in her work since 1989. She used to work with adults with a range of learning disabilities and adult neurological difficulties and stammerers. She teaches Makaton and communication strategies to professionals and to parents and carers of children and adults who need to develop their communication, speech and language skills.

Workshop: New Families

Jamie Sparkes

Are you new to Cri du Chat and full of questions? Not sure where to start, or how to navigate all the things you need to deal with? Come to this workshop if that sounds like you, or if you want to help our new families find their way.

Workshop: Sleep

Helen Rutherford

Discuss your children’s sleep issues, and techniques to help them. Facilitated by Helen Rutherford from the Children’s Sleep Charity.

Workshop: Speech & Language

Helene Elia

Come and discuss speech and language development, led by our visiting expert Helene, a speech and language therapist. Share experiences and tips with other parents.

Workshop: Scoliosis

Caspar Hull

Scoliosis (curvature of the spine) is a common problem in children with Cri du Chat. Discuss any concerns, experiences, or questions in this group, facilitated by Caspar Hull, osteopath and CdCSSG committee member.

Workshop: Challenging Behaviour

Pippa McIntyre

Many of our children have some challenging behaviour. This workshop is to share your experiences, explore techniques and tools to manage behaviour, and learn how to create a positive behaviour support plan for your child.

Workshop: Puberty

Caspar Hull

Puberty can be a confusing time for anyone! Discuss how to help your child navigate it with other parents, and share experiences. Led by Caspar Hull, who’s been through it all himself (so to speak).

Workshop: Direct Payments

Angie Stokes

Direct payments are a way for you to take control of the care your child needs. Find out more about what they are, how they work, and share your experiences of using them best. Facilitated by Angie Stokes and Amanda from Forever Savvy.

Workshop: Respite

Damian Haywood

There are lots of respite options out there, but it varies from area to area, and often you have to know what you’re looking for. Join this group to share your knowledge about respite options, and look for new ideas. Facilitated by Damian Haywood.

Workshop: Toilet Training

Facilitator TBC

Have you toilet trained your child? Are you thinking about doing so in the future? Not sure how to start? Come and share ideas and experiences with other families in the same situation.

Workshop: Support Group

James Smith & Lucy Santos

A discussion session for those who wish to know more about the support group – whether it be how you can get involved with fundraising, or how you can access grants to arrange regional family meetings. We are also interested in hearing how we can help you more. All ideas and comments are welcome!

We’re also looking for committee members, so come along if you want to help out on that front.

Frequently Asked Questions

How many can sleep in each room?

Each room can take two adults, and two children under 12 on z-beds. We also have a few larger rooms available that will fit a cot as well if you are a family with three small children.

Are cots provided by the hotel?

The hotel will be able to provide some cots, but supply is always limited, so if you have a travel cot you can bring, please do.