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Keep up-to-date with what's happening at SBH Scotland.
A Christmas Appeal making sure families get support at the most challenging of times
Last year little Amber McRae wasn’t able to spend Christmas with her family. Instead, she spent six weeks in hospital after undergoing gruelling and risky skull expansion surgery. Amber has spina bifida and hydrocephalus and the surgery was the last chance to try and bring down the pressure in her head caused by hydrocephalus and save her life.
SBH Scotland helped to support the family as they navigated this incredibly difficult time. Now Leanne and Amber are teaming up with the charity to launch a Christmas Appeal to raise funds to support other families going through the same thing this year.
Last Christmas, Amber was in hospital with her mum Leanne by her side. Although her dad Paul and her big sister Laila visited daily, it was heartbreaking for Leanne to watch them leave each day and for the family to be apart at this special time of year.
The family was terrified that Amber might not make it:
“I was shaken to the core,” recalls Leanne. “It was a really high-risk operation and there was no guarantee that she would survive it, but at that point we had run out of options.”
"My mantra is, tell me I can't, and I will show you that I can"
Elizabeth Grant is 63 and has spina bifida yet she has never let that define who she is! Today, on World Spina Bifida and Hydrocephalus Day she wanted to share some of her own insights into living with a disability and what it means to her.
“I was one of seven children so there wasn’t much time for molly-coddling when I was born! My parents were practical people so when my brothers were doing something my dad would just try to find a solution so I could take part in the activity as well. They always looked for a way that I could do something rather than think I couldn’t.
Because of this, I am as self-sufficient as I can be. That is not to say life is easy as it’s not. Over the years I have been through a lot, about 40 years ago I had my right hipbone removed and for nearly 20 years I have had an open wound which the surgeon can’t do anything about without creating a whole other set of issues. Through all of that the biggest challenge I have faced was losing my husband 12 years ago. We complemented each other so well; it was difficult to deal with.
Despite all of this, I want to show others that life does not stop because of disability. I make sure that I spend my time doing everything that I want to in life, I let nothing hold me back. I go to tai-chi class, I’m involved in my local church, I love my garden, I’m a Cub leader and I have a courageous cat called Jasmine. I even had the opportunity to go canoeing recently and loved it – although thanks to health and safety, by the time I had all the life jackets and harnesses on I couldn’t move my arm to use the oars!”
SBH Scotland then asked Elizabeth what advice she would give to younger people living with disabilities. She continued,
“Don’t let people tell you what you need or want – you know what you want and you know your own condition. It always makes me very frustrated when people tell me what I want, for instance, I use a manual wheelchair and people constantly tell me I need a powerchair. However, I don’t want a powerchair, I am very happy manually pushing myself, so I will continue to do so!
It’s also so important to try and do as much as you can for yourself and fight tooth and nail for the right to do so.”
Many thanks to Elizabeth for sharing her story. #WSBHD
IF Call for applications for their 4th Youth with SBH "MY RIGHTS" Workshop (Estonia, 17-20 August 2019)
Last year two SBH Scotland members were accepted onto the International Federation for Spina Bifida and Hydrocephalus (IFSBH) workshop on your rights as a young person living with disability. Cailin and Murrin (pictured) both thoroughly enjoyed the experience. Now the IFSBH are asking for people to apply for this years FREE workshop.
Apply to take part in an exciting training opportunity, designed to support participation and independent living of youth with spina bifida and hydrocephalus!
Are you a young person (aged 18-35) living with spina bifida and/or hydrocephalus (SB/H)? Are you a member of a SB/H group or would like become one? Then you are welcome to apply for this free training!
This FREE 4-day training for young people with SB/H will take place on 17-20 August 2019 in Tallinn (Estonia).
Why this training?
Because young people with disabilities, including SB/H, are often subject to discrimination and prejudice. Sometimes, the society does not see them as valuable and equal citizens. If you have a disability, it may be more difficult to go to a university, get a job, or travel independently. You may be prevented from speaking for yourself, and the family or professionals get to make the decisions about your life.
The International Federation want to change that!
The aim of this training is to support you, a young person with a disability, in your journey towards self-confidence and independence! The training keywords are citizenship, leadership and full participation.
What is this training about?
During the training you will learn about the rights-based approach to independent living for youth with disabilities, ways to defend your rights in daily situations and cultivate your ability to make your voice heard
Our team of international experts will help you understand the human rights of persons with disabilities, how you can use the UN Convention on the Rights of Persons with Disabilities (and why you, as a young disabled person, should know it), and provide you with practical tools on activism.
In addition, the training will provide safe space discussions on issues, such as body image, sexuality and mental health.
You will develop a personal action plan to help you advocate on an issue you feel passionate about.
Who should take part in the training?
Young (18-35) people living with SB/H who:
- Want to be more active in their local SBH groups (or would like to start a group) and need skills to support them
- Are committed to organising an activity to promote independence and participation of young people with SB/H in the local community
- Are prepared to embrace the intensity of the course, and not remain its passive listeners
- Are able to attend the full duration of the training course (4 days)
- Are prepared to organise a local level activity (write articles, organise a workshop, meet with decision-makers…) using the knowledge received at the training
- Have a working level of English (able to speak, read and write it)
How long will the training be?
4 full working days. The programme will be designed to include some rest and entertainment time as well.
When?
17-20 August 2019. Arrival is foreseen for 16 August, and departure on 21 August.
Where?
Laulasmaa, 35 km from Tallinn (Estonia). (We organise local transport, don’t worry!)
Technical details
Participation in the training for selected participants with SB/H is free of charge. Your travel, accommodation (5 nights) and meals during the training will be paid for.
How to apply?
Fill out the application form by 15 July 2019. You will be informed of the outcome of your application on 17 July 2019.
Aberdeenshire School Initiative Wins at National Awards
Spina Bifida Hydrocephalus Scotland’s work with Dalespark Primary School in Peterhead has seen it crowned winner of the ‘Education Partnership’ Award at the ScottishPower Foundation Awards in Glasgow last night (7 Nov).
Spina Bifida Hydrocephalus Scotland (SBH Scotland) is working with teachers and students at Dalespark Primary; which has an exceptional approach in working for the inclusion of those with additional support needs. Together, they are producing an educational film that will offer insight into aspects which have worked well for their members affected by spina bifida and/or hydrocephalus.
This film, along with existing SBH Scotland resources, will be promoted by the charity’s support workers to schools across Scotland over the next twelve months. It will serve as a model of how these complex disabilities can be approached by those working in an education setting to help all children reach their full potential.
SBH Scotland was granted £20,000 from the ScottishPower Foundation at the beginning of the year. This funding went towards our Be All You Can Be work. The programme offers specialist early intervention support for 186 children aged 0-8 across Scotland and an estimated 558 carers or siblings.
Representatives from the charity attended the ceremony which took place at the new Glasgow HQ of ScottishPower, funder of the ScottishPower Foundation. SBH Scotland received an additional £5,000 as part of the education award.
Deborah Roe, Director of Fundraising for SBH Scotland, said, “We are very grateful for the continued support of the Scottish Power Foundation and honoured to win this award which will enable our inclusion work in schools to continue into the future. We’d also like to thank Dalespark Primary School for their dedication in working with us on this important project.”
Ann McKechin, Trustee and Executive Officer of the ScottishPower Foundation, said: “It’s fantastic to see Spina Bifida Hydrocephalus Scotland partner with Dalespark Primary School to improve the lives of young people facing difficulties in our local communities and create best practice tools. The project is a model example of how charities and education services can successfully work together to foster better conditions for children, and a very worthy winner.”
The ScottishPower Foundation was established in 2013 to support charitable projects and reinforce the energy company’s commitment to charitable work throughout the UK. The Awards ceremony is now in its fourth year and has become a yearly platform celebrate the work of the projects which the Foundation has provided funding to during 2017. This year it donated more than £1.8M to 26 organisations.
Continence Information Day
SBH Scotland are holding a ‘Continence Information Day’ on Wednesday the 25th of October 2017. It will be at The Dan Young Building from 2pm-7pm and you can drop-in at any time. The session is open to anyone looking for continence advice.
By attending the information day you will be able to talk with some of the leading continence providers for bowel and bladder care. They’ll be able to answer your questions and show you their new and existing products.
· View new & existing products on the market
· Speak directly to providers
· Ask questions
· Find out about local services
If you require any further information, please;
Tel: 01236 804944
Email: teleclinic@sbhscotland.org.uk
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