Since my young daughter was diagnosed with Usher syndrome 5 years ago I had never met another child or family living with Usher syndrome here in the UK.
I'd been lucky enough to travel to the Usher Syndrome Coalition's family conference in America back in 2014 and knew how beneficial it could be to share experiences with other families facing the same challenges. I also knew how much the parents and children I'd met there had inspired me and given me strength to face the challenges of Usher syndrome with more confidence and insight. So, I decided to mark the second International Usher Syndrome Awareness Day by organising an event for children living with Usher syndrome in the UK and their families, so that I could try to create a support network for families closer to home.
We were really grateful to the Molly Watt Trust for providing funding towards this event. Not only did it mean we could provide lunch for those people who had travelled a long way to be there and for the volunteers who had given up their Saturday to help, it was also fantastic to have the moral support and encouragement from the charity which gave the boost needed to hold the event in the first place. A sincere thank you for that.
The event was hosted by Genie Network, which is a fantastic Manchester-based charity for deaf children and their families. Their family centre was the perfect venue, and together with their volunteers, provided the children with a fantastic range of activities to get involved in. The children designed and painted light shades, created 3D structures using gummy bears (!), enjoyed team-building activities and spent time chatting about things that were important to them. We were really fortunate to have staff members from the National Deaf Children Society and Sense attending, who facilitated the activities for the children and spent time getting to know them. After all that fun the afternoon was finished off with a vote on which film to watch, and they zonked out on beanbags with popcorn watching Willy Wonka do his stuff!
All the activities for the kids left the parents free to chat and make the most of the opportunity to share experiences. There is no replacement for getting insight and tips direct from other parents who are going through the same stages and challenges. We were able to chat about the various issues which Usher syndrome presents for our children, and see how each family has chosen to deal with it. I learnt about another family using hiking poles (in bright pink!) to enable their daughter to walk independently over rough ground without needing to hold hands when they go on family walks. Another tip was adding movement-activated lights close to a child's bedroom to help them see and feel less frightened if they wake up in the night. We talked about the various levels of support our children receive in schools, and what works well in those different support scenarios. We talked through concerns about the future, and the different ways we talk about these with our children. It was clear that each family's experience has been so different depending on where they live, how the diagnosis was handled and the support they receive from local services. But it was also clear that we share a great deal of common ground, and that we can really benefit by learning from each other and talking about the solutions we are finding to the challenges.
For me perhaps the most valuable outcome of the event is the fact that my daughter now knows other children who have Usher syndrome. Usher syndrome is no longer something we chat about in an abstract way - she can visualise those children when we are talking about Usher syndrome, and has concrete examples of children who are enjoying their lives to the full. I think this will be invaluable in helping her normalise Usher syndrome as she becomes more aware of what it means for her.
This event marks the first gathering, but we hope it won't be the last. We are already in discussions with various charities to think about opportunities in 2017 for Usher families to come together. If any parents or families reading this want to get involved please contact the Molly Watt Trust via their website and they can connect you with the families involved.
It would be great to develop a network of connected families here in the UK so that we can learn from and lean on each other, and ensure our children grow up with access to a strong peer support network.