What is your mission?
Our mission is to enable children with Down syndrome (DS) in London to maximise their potential by developing communication, social and other life skills. Downright Excellent (DEx) helps children participate in society through a range of activities such as educational and therapy programmes, quality play, support for parents and carers and education and support for siblings. Downright Excellent is educational, supportive and fun!
How did you get started?
In 2005, three families from Islington whose babies have DS came together to fund for a speech and language specialist. Children with DS need very early and ongoing customised intervention to help them overcome their communication and social challenges. By 2007, 15 families with under-school-age children were involved and the little group registered as a charity.
In the decade since, Downright Excellent has expanded even more. We now provide support for babies and children up to the age of 14. Currently, 105 families attend regularly to access our heavily subsidised services. Some of the children from our early days are still with Downright Excellent and are now in their teens (the development and diversifying of Downright Excellent through the years is fascinating and we could tell you much more!).
What type of activities do you do?
Primarily, Speech and Language Therapy (SLT) focusing on communication and social skills. Everything else we do supports and reinforces the need to communicate effectively in order to maximise potential. We run Stay and Play (S&P) on Fridays where parents and carers can relax, exchange information and support each other. Babies and children can learn to play together and acquire lots of crucial skills.
On Saturdays, we reinforce the lessons learned in SLT sessions using interesting activities –we call it ‘DExstars’. We also work with an experienced occupational therapist who helps the children manage everyday activities that are difficult because of low muscle tone or sensory issues, such as getting dressed or holding a pencil.
‘Tweens’ on Saturdays is for the 10-13 age group and is more focused on life skills than on SLT. Tweens learn useful skills – everything from going shopping to making sandwiches. Other ad hoc activities include music therapy and visits from professionals such as dentists and police officers.
How will Octopus Giving make a difference to the work you do?
Octopus Giving has already made a huge difference by giving a real sense of excitement and opportunity. Octopus has so many talented people who are willing to help that it seems the possibilities are endless. Downright Excellent punches above its weight and achieves a lot, but we are under-resourced and always lack the capacity to do much more in so many directions. We believe the advice and physical assistance that every Octopus business could give is going to make a significant difference to Downright Excellent over the next three years.
What one thing would get you closer to achieving your mission?
A robust strategy for sustainable funding for the foreseeable future – helping us to think beyond individual grants. We currently have to prioritise the fundraising above all else and spend most time and energy on it. I think the brains in Octopus can really help us put a realistic plan together – and help us achieve it.
What are you working on right now?
We are working on quite a few things at the moment, so I’ll just name a few. We are developing and launching the Tweens ‘employability skills’ project for those reaching 14, which includes raising funds to pay a facilitator. We are launching a baby programme and the Parent Child Interaction programme (both funded by Octopus Giving, still leaving a lot of your grant for core essentials). We are also developing a more dynamic DExstars programme now that we have found two excellent people to share the coordinator post.
What things do you worry about?
There are so many questions that are always on our minds as we continue to develop Downright Excellent. Are we doing enough for the children and their families? Are our systems and processes sufficiently robust to stand up to external scrutiny and identify Downright Excellent as a mature, well-run organisation? Can we keep growing sustainably? Is everyone happy?
What are you most proud of?
We are most proud of our good working relationships with families. We are in the privileged position of seeing our families each week, which means we develop a deep understanding of each child’s needs and tailor our therapy and support accordingly. We are rewarded by families being incredibly loyal. Many of our families have been with us for years and we have evolved into a diverse, close and caring community.
What makes you positive about the future?
The children and the progress they make with us makes me feel hugely positive. We provide a well-established, evidence-based model of therapy and would love to develop this further so that we can better support our children and families at each stage of their journey with us. Downright Excellent has grown from small beginnings into a successful organisation thanks to the dynamism of the people who have contributed over the last ten years. They are an inspiration for the next ten years, too.
How can people get involved?
Come and visit on Friday and Saturday mornings and join in! We are now based only a five-minute walk from Hoxton Station – what an area to spend the afternoon and evening in after a fantastic morning at Downright Excellent!
Other possibilities include: helping with family surveys, making greetings cards, contacting other organisations to persuade them to help us, helping develop and run a brand-new Summer school, helping set up and provide work shadowing – and more beyond!
Visit the Downright Excellent website to find out more.