What I told the Minister (& what I would have told him if I had more time!)

So what do you get when you put 11 very opinionated, passionate, at the end of their tether Mothers of children with Special Needs Children in a room with the Minister for children?  A meeting that almost became a group therapy session that could have run all day if the very harassed clock watching aides would have allowed it.

I'm third from the left in the black dress

I met with Edward Timpson, MP - officially known as the Parliamentary Undersecretary of State (Children & Families) earlier this week as part of a delegation of Bloggers with an interest in SEN invited by the Tots100 bloggers forum.  We were specifically invited to discuss our experiences of the Special Education Needs system - each of us bore our individual battle scars from our dealings with the system and over and over the same themes came up, and in a way it was good to know that I was not alone in my battle to ensure that ALL my children achieved their potential, regardless of their ability or disability, age or gender.

Engage brain before opening mouth

I am very fortunate as I can probably count on the fingers of one hand the times when someone has said something negative to my face about Daisy, and even those times the intention was not spiteful, it was more a case of the person who made the comment not thinking it through and quite clearly being from a different value set to me.  Like the nurse, who in the middle of the night, as she brought in yet another IV for a screaming Daisy, turned to me and said, in a very matter of fact way "do you ever think that Daisy just shouldn't have been here..."

Life in the SEN Pinball Machine

Just blowing the dust and cobwebs off the blog before I begin..... not only has my trusty laptop failed me and just like in the early months of this blog I am reduced to borrowing my son's computer, I am also just about emerging battered and bruised from what can only be described a rocky start to 2013.

Life is never going to be easy parenting four children, especially when two of them require additional attention but when you are also battling the system to get your children the support and help you need then reserves run dry very quickly.

Just keep swimming........

Those readers who have followed my blog for a while know that sometimes I drop off the blogging radar, mainly because of workload at home or sometimes because I have lost my blogging mojo.  I guess the last few weeks has been a combination of the two.  Poor Andy still has his arm in plaster following a (non-alcohol related) fall the day after his 50th birthday, and this has meant my workload has gone sky high as a broken

Daisy on Text Santa

Here's Daisy's story featured as part of the Text Santa appeal show which went out in the UK on Friday evening.  So proud of my little girl!

Tis the season to be jolly

Sometimes even I am taken aback by the many twists and turns of our lives.  For all of November Daisy was in Great Ormond Street where she had a major five hour surgery, central line infection and sepsis, blood transfusions, fluid resuscitation's and various ongoing bladder infections.  Once  she was stable and the hospital were not doing any more than we would do at home (which as you know is quite a lot really!), we transferred for a lovely transitional stay to our hospice, this time the one in Hampton, Shooting Star House. 

Happy to be in the ambulance transferring to Shooting Star House

Happy Birthday Daddy Pig!

Anyone who knows Daisy well will know that one of the most important things in her life is Peppa Pig, the cartoon character - in Daisy's world she is Peppa, Jules is George, I am mummy pig and Andy is Daddy Pig.  It is an absolute sign of affection if she calls you "Pig".  Andy bears a lot of similarities to Peppa's daddy - he likes to hide away and read his paper, he's not very good at keeping fit, he loves chocolate cake and he often gets things wrong which mummy pig has to sort out!!!  But most of all, Peppa loves him, just as Daisy loves her own Daddy Pig!

Here's to the geeks - because of them I'm not alone

Sir Tim Berners-Lee, Inventor of the World Wide Web

When I left university and came to London with Andy my first job was a graduate traineeship at Mercury Communications, the telephone company set up as a rival to the de-nationalised British Telecom.  I worked in various bits of the company - from the mobile phone division, to the messaging division to managing the Criminal Justice Sector Marketing for the Government Sector Division.  At this time the internet was in its early infancy and being developed and used by techie people in darkened rooms.  Not long after I joined Mercury a new Chief Executive was appointed, his name was Mike Harris - he was (and is) a real business visionary and he spearheaded a company wide programme called Imagine 97 (bearing in mind it was 1992 at the time!!!) which was focused on getting the whole company to think about the possibilities of communication and technology offered by the company five years on (and beyond).  I vividly remember the main premise was that the communications sector would grow to offer what the company called "PIE in the Palm" - People, Information and Technology in the Palm of your hand.