Getting the best out of your professional is the title of a workshop I developed for parents like me who have children with additional needs. Some people, particularly practitioners, may wince at the title. Yet families like mine are often referred to as clients, case-load or service-users. Seeing the table turned shines an interesting light [...]
“Our recommendation is that you never feed your son orally again.” These words were spoken to me as I sat wedged along a corridor at Great Ormond Street Hospital. No box of tissues. No comfortable sofa. Less than ten words were used to inform me that my son would never eat another birthday cake, [...]
Some lovely people (probably my parents) have nominated me for the category of ‘Making a Difference’ at the BAPS blogging awards presented by Bringing us Together. It got me thinking, how do I want to make a difference? Firstly, the difference starts at home. There is no point in me speaking and writing to inform [...]
On 29th November I was privileged to speak on behalf of parents at the Disabled Children's Partnership manifesto launch at Parliament. It was fantastic to see so many charities and influential people recognising the struggles families like mine face daily. It was refreshing to feel seen and heard, that people are acknowledging the #SecretLivesofUs and wanting [...]
The lights were on, the stage packed and hundreds of people sat in anticipation. For months, volunteers, family and friends had supported performers to practice every week. Last night, S was on stage with an amazing group of people for Music is Magic at the London Palladium. It is the second time he has had [...]
“It’s just so hard, it's constant, not just physically but emotionally and mentally.” I muster every ounce of ‘I hear you’, with a simple nod. In slightly more frantic tones she continues, “it isn’t that it isn’t good, it is wonderful, she is deligh…” “Stop, you don’t need to explain.” Three times this week I [...]
Challenging 100% Attendance Awards: There are many important things to make a noise about. Human trafficking, climate change, malaria epidemic, hunger, and the rights of LGBT are just a few that spring to mind. But in my little corner of the world, we are affected by ableism. Bringing up a family in a society that values [...]
VIRAL Blog post from July 2016 seen by over 4 million people and still creating waves. Four reasons my son won't accept his 100% Attendance Award. No. 2 son has been awarded an evening at a soft play centre because he has 100% attendance at school. He loves going to soft play, he loves going [...]
#vote2017 The snap General election, geared at making our nation more stable and stronger for the future, is here. For the third time in as many years, the UK sits on the brink, but will tomorrow bring change? There are certain experiences in life that bring out the best and worst in people. Parenthood, terrorist [...]
Events this week has reminded us all how life can change in a minute. The tragedy in Manchester has shattered the hearts and lives of so many families. For 49,000 families in the UK, we know the reality of a life defining moment. Our children have a life-limiting diagnosis and so we have experienced first hand [...]
