We’ve just returned back to the UK buoyed up by a fabulous experience at #EAMHID25 in Ghent where Jen and the DanceSyndrome dancers made a significant contribution. Not only did they have an opportunity to deliver a solicited symposium (presentation) in conjunction with the NHS and a workshop ‘Embracing Inclusivity’, but they were given license to share their passion and … Read More
A ‘service user’ summer
How was it for you? Your summer holiday that is. Hopefully you’re restored, refreshed, relaxed, reinvigorated. It’s important isn’t it. That break we all value so much, plan ahead of time, secure the dates in the work calendar, decide whether we prefer to go alone, with family or friends. As autonomous adults we can choose where, when, the budget, and … Read More
Dear Parent
If you don’t have a child with learning disabilities, please read on to understand more. This is our reality. If like me you do have an offspring with learning disabilities you’ll experience life very differently to the rest of society. Dear Parent, How are you doing today? If we haven’t met before I’m Jen’s mum, occasionally known as Sue. Today … Read More
We have no idea what’s possible
30 years ago, May 1995, Jen aged 13 lay on a blanket under the pear tree in the garden whilst we planted an orchard. She was incapable of doing anything else. Jen had already been receiving medical intervention for 3 weeks. 1 day later she was in hospital and we were advised that she was terminally ill. At best she … Read More
This Down Syndrome Awareness Week 2025
Spot the dancers a mile off! A meeting of hearts and minds through dance, sparkles, smiles, two honorary Doctors of Arts from the University of Salford in 2024 communicate through their shared passion. From the moment we arrived at the prestigious Cholmondley Room Jen was on the look out for Dr Ria Meera Munshi. Her excitement was palpable. Yet again … Read More
Support must be fit for purpose – begin by listening
In all parts of our lives we find systems which are meant to be helpful. Support to navigate a certain aspect or point in time. Everyone accepts that ‘the system’ is broken. But until we listen intelligently to individuals, people with learning disabilities will continue to remain invisible. If we value everybody, truly believe in equity and equality of opportunity, … Read More
Solving the SEND Crisis – our opinions and evidence
The UK Government Education Committee inquiry “will focus on how to achieve both short term stability and long-term sustainability for the SEND system to improve experiences and outcomes for children and young people.” January 2025. We have submitted written evidence as parents of a 43 year old daughter with Down’s syndrome and feel that opening up the conversations, encouraging and … Read More
Eternal Opportunism
I have a problem. I have eternal opportunism written into my DNA. My glass is (almost) always half full, because if half empty I’d have walked off the end of that metaphorical short plank a long long time ago; or as Malcolm says, it keeps the men in white coats at bay. So how about you? Do you have clear … Read More
Thank you for being part of extraordinary lives
We have so much to give thanks for. So many people over the years have said “yes”, or “I don’t know but have you tried…” and supported our ambition that Jen born with Down’s syndrome, and others like her to be treated like any other human being – having the right support and opportunities to pursue their dreams and follow … Read More
The week that was spreading joy and happiness
The week that was! The precursor to the eventful week anticipated! Life with and for Jen is full on in so many wonderful ways no one could ever have foreseen. As a dancer Jen has made her mark. As a daughter, sister, aunt, niece, cousin, friend she is loved. As a leader, a flagbearer, a multi-award winner, a role model, … Read More