Today is another three way share, this time between Sunnyside Rural Trust, Bringing Us Together, and inControl.
First up, Sunnyside Rural Trust who adopted today to share a report of the celebration and launch (yesterday) of a special and innovative Memorial Garden. The garden, which is a physical representation of the poems collected in The Memoir Garden, has been created as a place for remembrance.
A group of 18 trainees from Sunnyside Rural Trust, who all have learning disabilities, worked with local author Emma Claire Sweeney. She explored their reminiscences and collaborated with each one to produce a poem. The resulting book, The Memoir Garden, was well received both by literary critics and by the learning disability community.
The participants valued this all too rare validation of their experiences. At the launch, Roxy Simmons, one of the 18, read a speech prepared by the group, saying “We thought it was important for people to understand about our lives. We don’t want people to think that we are thick. We want people to know that we have the same feelings, relationships, and experiences as everyone else. We will maintain the garden together as a place of peace and quiet where we can sit and reminisce. In particular, this is a space where we will remember our old friend’s Leon and Marie”.
The garden was completed within 107 days to support the #JusticeforLB #107days campaign. The work on the garden has been carried out by the team at the Activity Centre along with volunteering help from Berkhamsted Waitrose. Painted glass bottles, depicting images from each poem along with the poet’s names, hang from the trees. The garden’s centrepiece, a wooden sculpture of a book, was unveiled at the launch. The sculpture is engraved with the words ‘Voices to be heard’.
The #JusticeforLB campaign highlights our fears as parents. It has had a profound impact on many of us and has brought us together as we reflect, feel emotional and share our fears. Each of us knows that this could happen to our own son or daughter.
We are fearful that our young people’s voice will be lost, that they will not be listened to and that we, the people who love them the most, will be left out of vital decision making. We have huge concerns about the following questions:
- What happens to our young people when we are dead or no longer able to look after them ourselves?
- How do we keep them strong and supported to make decisions that have a huge impact on their lives?
- How do we keep our young people safe as they grow up into a world that is full of prejudice, fear, abuse and discrimination?
- How do we keep their voice at the centre of all planning and decision making?
- How do we convince others that our sons and daughters, whatever their level of impairment, have a voice that must be listened to if they are to be happy, strong and safe?
For many of us our years of involvement and knowledge of our own children and the systems they encounter brings us a deep insight into our children’s well-being. We know what makes them happy, how they communicate and what support they need. We know what they are trying to say and we work hard at sharing that information with others.
However, only too often our understanding is ignored; our young people are misunderstood and problems arise. We want our young people and adults to be independent and safe. We want our children and young people to grow up knowing and feeling what it is like to be in the ‘driving seat’ and to understand the real power of making decisions, what good looks like, and what support they need to be part of their communities.
Our event to mark Day 104 of #107days of action for #JusticeforLB will give families the opportunity to come together to talk about and share stories of:
- The madness of the system and what we can practically do amongst such madness
- How can we make the system less mad? We will look at what is working and what is not working in the current system
- How do we keep ourselves strong within the current madness?
Through telling our stories and using positive ways that families have used it plus ways in which it has been abused will enable families to learn from one another.
Last, but by no means least, is In Control:
For the past eight years, In Control has been working with a growing number of services, children, young people and families. Although this work often focuses on the systems needed to make personal budgets work, the real drive to this work is ensuring good support for all children and young people, and the recognition that some may need more support than others. We never loose sight of what this is really about…valuing and cherishing every child’s right to aspire, learn, enjoy and take part in the life of their family and local community in ways that make sense to them, and for families to get the support they need to provide a healthy, happy and nurturing home for their children.
The experience of LB and his family is one of many recent reminders that we, somewhere along the line have a gone a bit off track, have forgotten why we are supporting children and young people and have ended up with systems and support that lead to tragedies like those of LB and his family. We are starting our day (Day 104), chaired by Miro Griffiths, with a presentation by two parents, Nikki and Tricia. Nikki Delgarno, mum of Ethan, and Tricia Nicoll, mum of Ella and Cieran, both share a powerful story of the challenges of the system and the resilience needed to keep going.
But what does the future hold for Ethan, Ella and Cieran? With over 100 people from children’s services, including many parents, we have a chance to discuss and set out how we can change the future for these and many other children and young people, for us and the community we work with every day. Day 104 is an opportunity to step towards ending such experiences as those of LB and his family, of Josh and his family in Cornwall, of Nico and many others.
Following Nikki, Tricia and a group discussion we will be hearing from those involved in leading the Winterbourne programme and from Action for Children who will share a great example of what is possible if everyone commits to working together and supporting a child and their family. We will share presentations and notes from the whole morning and as suggested by #JusticeforLB we will be asking everyone to commit to taking one action which will make a difference for children and young people they know.
With so much awesome happening today, we’re feeling ever more confident that #JusticeforLB really will result in improvements for all dudes. Thank you all.