When I wrote about school last year in my series of blog posts ‘Dear Teacher…’ the response was phenomenal and they still remain the most popular posts I’ve ever written.  It was at this point that I began to realise what an emotive issue school was for all parents, not just for us.  The battle of getting others to see and to understand while still encouraging our children to be happy no matter what they are dealing with each day can often feel like a great balancing act and to give to one often takes from another.   

Now I see..

When I was a teacher I had an amazing young boy in my Nursery Class who was on the autistic spectrum, he truly taught me so much.  When I had the opportunity to have a Reception Class the following year I asked for him, for no other reason…

Living Life with Autonomic Dysfunction

My Relationship With ‘it’ Looking back, way back it has always been there, lurking in the background ready to pounce but the first real memory I have of it really mucking things up for me was when I fainted watching an end of term movie in junior school.  I was…

This post sums up the whole process of getting my daughter her wheelchair, from referral to her first outing and all the bits in-between.  The practicalities and emotions of paediatric wheelchair referrals…

April 2015

My daughter has just turned 5 and is half way through her Reception year at school.  She is not coping physically at all, just the effort needed to be in an upright position all day and to sit at tables to work or play with her friends is taking its toll.  This coupled with the new and exciting things to learn, friends to make, a new environment to explore, playtime, lunchtime, P.E. lessons, sitting in assemblies, lining up and learning new skills, it is all flaring her pain and fatigue to a level that she has never experienced before.  She is falling more, her feet and ankles sprain from walking as her muscles struggle to hold her together at all and she can’t cope with the simplest thing; like putting on a seat belt in the car or one of her older brothers asking her a question.  Daily meltdowns have become a normal part of her life as she just cries because it is a release for her emotions and her pain.

Watching Those You Love

We all know how hard it is when someone we love is poorly, when your child is throwing up with a bug, when they are hurt and upset or coughing and spluttering all night and it is disturbing their sleep, we would all swap places with them in…

Pain

I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, I think of it as having wonky wiring. …

I loved my job.  In fact it wasn’t a job to me.  It was more like a vocation, I enjoyed getting up on the morning and going to work every day, even cold Monday mornings in the depths of Winter.  I just loved it.

When I finally realised that I couldn’t manage physically to do my job properly I resigned.  I had to be realistic.  I owed it to the people I worked with, to the children I taught, to their families, I owed it to myself.

2016 Goals

To think carefully about how to help families navigate the education system when their children have an invisible illness like Ehlers-Danlos or Charcot Marie Tooth Disease.  I don’t know how this one will pan out but I am passionate about helping others in this area.  So many families…