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Mind the Gap: Parliament DCP manifesto launch

By | 2017-12-15T14:10:54+00:00 December 15th, 2017|Categories: Uncategorized|

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 [...]

Success and how to measure it.

By | 2017-11-03T14:56:06+00:00 October 16th, 2017|Categories: Uncategorized|

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 [...]

Good parent, bad emotions. #worldmentalhealthday

By | 2017-11-03T14:54:56+00:00 October 10th, 2017|Categories: emotions, exhaustion, Mother of child with special needs, mum of child with disability, Uncategorized, worldmentalhealthday|

“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 [...]

100% Attendance Awards Government Petition

By | 2017-11-03T14:56:51+00:00 October 6th, 2017|Categories: Uncategorized|

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 [...]

Why my son won’t be accepting his 100% attendance award

By | 2017-12-15T19:43:44+00:00 July 1st, 2017|Categories: Uncategorized|Tags: , |

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 out with his friends, we love it when school reward him BUT he won't be going. [...]

Cast your vote, but it won’t change tomorrow

By | 2017-10-11T15:36:56+00:00 June 8th, 2017|Categories: Uncategorized|

#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 [...]

5 Reasons to Turn Up the Volume

By | 2017-06-15T09:32:35+00:00 May 24th, 2017|Categories: #upthevolume, Children's Hospice Week, HRH Duchess Cambridge, Mother of child with special needs, Together for Short Lives, Uncategorized|

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 [...]

Choice: Real or Myth (Part 2)

By | 2017-06-15T12:05:12+00:00 April 26th, 2017|Categories: Uncategorized|

A couple of years ago, a student midwife tried to persuade me that choice in pregnancy meant being able to have a home birth. In my first blog Choice: Real or Myth, I reflected on how choice is a privilege afforded to women in the UK. Something that isn’t on offer for many others around the world. [...]

Unanswered questions and different answers

By | 2017-06-15T12:03:52+00:00 April 10th, 2017|Categories: Uncategorized|

When a child is diagnosed with a complex disability, a tidal wave of unanswered questions sweeps through life. As though, one minute you live in a town that you recognise, one you've lived in your whole life. It is a town with familiar faces, understandable street names and identifiable buildings. Then the next minute you've been teleported to a place where the [...]

Is it too much to ask, to not have to fight?

By | 2017-06-15T12:03:03+00:00 February 23rd, 2017|Categories: Changing places, disability, fighting, Mother of child with special needs, mum of child with disability, Uncategorized|

**WARNING IMAGINATION REQUIRED** Imagine me in a Miss World competition. Obviously to do this, you'd have to believe I've abandoned any feminist ideals, grown a foot in height, enhanced my breasts and shrunk my waist. But, bear with me... Should I ever be a contestant on Miss World and the MC asks me what would be my one wish, it probably wouldn't be 'World [...]