South Manchester Down’s syndrome support group March 2009
Website: http://www.dsmanchester.org.uk
Telephone: 07593 542 107
Group news and events
Easter Party Saturday April 4 - The donkey sanctuary Abbey Hey 10am – 1.30pm. Donkey rides, food, entertainer (hopefully! – can anybody make any recommendations?) and lots of fun!
To book a place, please contact Vicky Massey, ASAP
Proposed Training days – are you (or your children's schools) interested in any of these? Following the success of our 2 days of CLICKER 5 training, a couple of people expressed an interest in some other training days. We need to know whether you (or your children's schools) would be interested in them. Each would be one day's training and cost about £10-20 per parent and £30-£50 per professional, including lunch. If there is sufficient interest, we’ll go ahead and organise them.
1. Boardmaker – how to use it and make resources.
2. a day's course on providing visual support ie making resouces, IT etc ...
Please contact Bernadette (07593 542 107, email: ) to register an interest. October 5 2009: Numicon training day. Morning – introduction to Numicon, afternoon more advanced use, eg time, money. More details later.
Family Swim- Saturday March 14 from 3-4 pm all welcome
The small pool at Cheadle Swimming baths (Shiers Drive, Off Cheadle Road, Cheadle, SK8 1JR) is fairly warm, so we’ve booked it for a family swim/splash session from 3-4 pm. From 4-4.30 we will have exclusive use of the seating area, where we can have snacks and drinks (there is no café, just vending machines, so you may want to bring your own snacks and flasks!) and the soft play area. The capacity is 25 people in the pool, with restrictions being: max 20 children, non-swimmers under 9 must be accompanied by an adult (over 16), max 2 non swimmers per adult. Swimmers must be able to swim 25 meters. We ask for a minimum donation of £1 per person. If you know you will definitely be coming, please let us know (contact Bernadette on 07593 542 107, email: ). If it is a success, we might be able to make it a regular event.
Chatterbox club – Next session: March 28. If you have not enrolled for the speech and language sessions, feel free to come along for coffee and a chat. Venue: Heaton Moor evangelical church, Green Lane, Heaton Moor SK 4 3LH.
Friday morning meetings March 13, April 3, May 8, June 12 at Burnage children’s centre Broadhill Rd off Kingsway, 10 am-12 noon. Come and have a coffee and a chat and browse our resources. Children welcome but not essential! Please note that the April meeting has been moved to April 3, as April 10 is Good Friday. If you would like to attend but have problems with transport, please contact Bernadette on 07593 542 107, . In the past, we have had invited speakers (eg physiotherapists, continence nurses, dental nurses) at the meetings. Would anyone like us to do this again and who would you like us to invite? Contact Bernadette if interested.
Music Therapy Is anyone interested in their child (of any age) attending music therapy sessions at Chetham’s school of music in Manchester? Siblings of a similar age are also welcome. The sessions will start after Easter and will be on the following Saturday mornings May 2, May 9, June 6, June 13, June 20, July 4, July 11 and a further 2 possible dates, to be discussed April 18 and July 18. The cost will depend on how many enroll. You will be asked to commit to all sessions. If you are interested, please contact Bernadette on 07593 542 107, email: before March 28.
Fundraising idea - one of the ways we could raise funds for the group is by holding a “dinners” event where participants hold a dinner party/informal get together at home for ten friends, who each donate £5 to group funds. The dinners all take place on the same evening, during which a quiz is held, with a prize for the winning house. A provisional date of Friday, May 8 has been arranged for this. If you (or better still your friends, family or someone you know who supports us) would like to take part, or if you know of a friendly restaurant in the area which might be willing to donate a meal for two (or more) as a quiz prize, please get in touch at , tel: 07593 542 107
A Summer Fair has been organised for the group by our fundraising committee. It will be held on Saturday, July 11, noon-2pm, at The Pines in Hazel Grove. Anyone with items to donate to the tombola (eg. Unwanted gifts, chocolates, bottles of wine, new toys) is asked to contact Vicky Massey at Please also get in touch if you can donate your time for a job eg. 4 hours babysitting, a carwash and hoover, 2 hours of ironing etc for an auction to be held at the summer fair. Nearer the time we will be asking for donations of cakes and biscuits for the cake stall and we will need volunteers to staff the stalls.
Activities / conferences
Down Syndrome Education Conference provided by experts from Down Syndrome
Education International (Downsed) - The Palace Hotel, Manchester, 4-6 June 2009 See enclosed programme. Registration fees: Professionals – 2 days, early bird £299, standard £414; parents 1 day, early bird £115, standard £138. Members of Downsed International supporters club get 10% off registration fees. Early bird registration has been extended to April 3 http://www.downsed.com/conferences/ Tel: 023 9285 5330
There may be discounts for low income families – contact Downsed International about this after April 3. It may also be worth contacting local charitable groups like rotary/lions/round table to help with the cost of registration.
New Supporters' Club launched Support educational research and services for people with Down syndrome, stay informed and receive exclusive benefits and rewards. Down Syndrome Education International has launched a new regular giving scheme - the DownsEd Supporters' Club - replacing its previous membership scheme. Their work depends on the regular support of many donors in many countries. Regular giving through the Supporters' Club helps Downsed International to advance understanding and deliver effective support and education worldwide. Supporters' Club members have unique benefits, including discounts on products, services and training events, special updates, priority advice and briefing events.
Eating & Drinking Problems Experienced by Children with Down’s Syndrome Down's Syndrome Association and Symbol one-day conference, 9.15am-4.00pm,Thursday 19 March 2009, Crowne Plaza Hotel, National Exhibition Centre, Birmingham Target audience: Speech and Language Therapists and Therapy Assistants, other professionals and parent/family carers of children with Down’s syndrome. £95 for professionals, £35 for parents/family carers. To register, contact Lesley Alabaf, Down’s Syndrome Association Tel: 0845 230 0372, Fax: 0845 230 0373 Email: Website: www.downs-syndrome.org.uk
Special Needs North Manchester Central April 24 & 25 10am-5pm - the leading exhibition in the north of England for teachers and school support staff. Bob Black from the DSA will be giving 2 seminars concerning children with Down’s syndrome. Ddiscover the latest SEN resources available for your setting or school and gain practical ideas, confidence and new skills at the inspirational seminars on offer.There is a continuous professional development seminar programme, presenting over 30 pertinent topics over two days. www.teachingexhibitions.co.uk, Tel: 0870 112 9163, free to attend, seminars £9 a sessions or £6 early bird registration.
Development through Play Monthly get together ,Longsight children’s centre, last Friday of month 1-3 pm. Call Pre-school special needs on 0161 274 6377 for more information
Phab is a leading national charity committed to promoting and encouraging disabled and non-disabled people to take part in a wide range of social and sports activities. For many years Phab has provided and ran a range of projects enabling children and young people with and without disabilities to spend a week together at accessible venues and to be involved in a wide range of activities. In 2009 Phab is organising a summer programme of amazing residential projects at specialist centres around the country offering tuition in a wide range of outdoor activities. Each project usually runs for 7 days. Anyone aged 9 – 16 years old can apply (this age range is a guideline only) with our without a disability – individuals, brothers and sisters, friends, small groups, and carers are welcome to attend. You do not need to be a Phab Club Member and Phab welcomes referrals and applications from all sources around Great Britain. Everyone who attends is able to take part in a huge range of activities such as canoeing, climbing, abseiling, caving, horse riding, sailing, archers, zip wire, swimming, discos, trips out to theme parks and other attractions. To request an application form for any of Phabs projects or if you would like further information please contact Rebecca Hargreaves National Development Manager 01254 824 or visit www.phab.org.uk
Big Screen Entertainment – Race to Witch Mountain Odeon at The Printworks in Manchester. Wednesday 15th April 2009 Arrive from 10.15am for film starting at approximately 11.00am A Las Vegas cab driver comes across two teens with supernatural powers and then finds himself in an adventure that he can’t explain. They soon discover that their only chance to save the world lies in the secrets of Witch Mountain. The race begins as they are being tracked down by the government, mobsters and extra terrestrials as they try to stop them. If you would like to book your FREE places please contact Karen Brumell on 0161 743 0700 or
Royal school for the deaf and communication disorders, Cheadle, now the Seashell trust runs Children’s able and disabled sports events and weeks. For booking information and enquiries, please contact: Gemma Castle CADS Development Officer 0161 610 0122
Support
Calling all dads Contact a family is running a series of workshops and events aimed at dads and male carers in Manchester together with a programme of family events. If you are the father of a child with additional needs who is living in Manchester and would like to be involved in a series of events and workshops, please contact Claire Kerfoot on 0161 743 0700 email . A number of fathers from various workshops have helped produce a new information booklet from Contact a family. It has helpful hints and tips and stories from fathers. It can be downloaded from http://www.cafamily.org.uk/pdfs/fathers.pdf or call 0161 743 0700.
SNAP is a Warrington based support group with an emphasis on targeting dads and male carers. Meetings at the Saracens Head pub, Wilderspool Causeway. Call Andrew or Joanne Freeman on 01925 456 227 for details.
A discussion list has been set up for those with a dual diagnosis of DS and autistic spectrum disorder. To subscribe send an email to with SUBSCRIBE DS-AUTISM-UK in the body of the message. Or go to http://listserv.down-syndrome.net/SCRIPTS/WA-DOWNS.EXE?AO=DS-AUTISM-UK and follow the instructions.
Equipment/grants
Specialist scooters and trikes
Companies that sell specialist scooters and bikes/ trikes include:
Mission cycles: ttp://www.missioncycles.co.uk Tel: 01622 815678
Wizzbike.com http://www.wizzbike.com Tel: 0208 326 2819
Tom Cat http://www.tomcatspecialneeds.co.uk Tel: 01452 616900
Children Today is a charity that gives grants for a wide range of equipment for children and young people with sickness or disability across the UK. For more information visit http://www.children-today.org.uk/ or ‘phone 01244 335622.
Cerebra is another charity which supports disabled children and their carers. Direct and practical assistance is available through the charity’s grant scheme. If your child is aged 16 or under and the equipment or resource that would benefit them is not available from statutory agencies, such as social services or the NHS, contact Cerebra grants co-ordinator Debbie Godsave on 01267 244 216 or
Cerebra runs a scheme providing speech and language therapy vouchers for children who are not getting SLT and a scheme providing a grant towards the cost of setting up a will and trust.
Publications
A guide to dealing with Bullying Contact a Family has joined forces with Parentline Plus to produce a new guide about dealing with bullying for parents of disabled children.
The guide offers hints and tips on how to spot signs of bullying. It also offers actions and strategies you can take as a parent. If you would like a copy of this guide you can either download if from our website at http://www.cafamily.org.uk/bullying.pdf or contact the North West Office on 0161 743 0700 Parentline Plus has also launched a new website surrounding the issues of bullying : http://www.besomeonetotell.org.uk
Carers UK has produced a booklet Support For Carers: A Guide To Telecare about the wide range of sensors (eg. Movement sensors, smoke detectors, epilepsy sensors) which can be used during the night. The booklet is available free from www.carers.org or on 020 7378 4999
A new book entitled Fasten Your Seatbelt has been brought out for teenage siblings of people with Down’s syndrome. The book, co-authored by Brian Skotko, a physician at Children’s Hospital Boston, is available from Amazon and from the Woodbine House website.
Dates or your diary
Coffee morning: regular monthly meeting on Friday March 13 10am-12noon at Burnage Children’s Centre, Broadhill Road, off Kingsway.
Family Swim Saturday March 14 from 3-4 pm all welcome