Trailblazing

So, I realise I bang on about inclusion rather a lot. That makes me both a zealot, and a hypocrite, because my son attends a specialist provision rather than the local primary school that his sisters go to. There are several reasons Benjamin still attends the wonderful, well-equipped, superbly-staffed specialist provision at which he started … Continue reading Trailblazing

Ignorance is bliss?

On the day that our lives were turned upside-down by an emergency 38-week scan, I remember begging the neurologist to put us in touch with other families with children like our as-yet unborn child. Some part of me knew – despite the medical predictions ("Your baby will never walk, or talk. He won’t be able … Continue reading Ignorance is bliss?

Knowing better

When I was ten years old, I had a best friend. Her name was Helen. She lived ten minutes up the road on a smallholding with ponies (!) and had her own (rickety, damp-smelling) caravan, where we used to spend our afternoons hiding from our little brothers, singing Jason & Kylie songs, trying on lipstick … Continue reading Knowing better

Daring to dream

For the past couple of weeks, Benjamin has been in the habit of waking in the early hours of the morning, hot, agitated, dystonic, twitchy. I’ve tried everything I can think of to relieve his discomfort: chest physio, pain relief, muscle relaxants, suctioning, repositioning. I’ve checked his heart rate, breathing rate, oxygen saturations and temperature. … Continue reading Daring to dream

Breaking the chain

Last week was a tough one. My eldest was under-the-weather and whiny. My youngest was angry, violent and loud. My husband was overworked and unwell. Benjamin’s health was up and down, as usual. No-one had enough sleep. We had problems with transport, issues with medication, missed phone calls from professionals, unnecessary arguments, and at times … Continue reading Breaking the chain

It ain’t easy being green

So, this week I got into an argument with some people I don't know on Facebook (I know, I know, I should know better). The argument was about this picture, originally seen in a viral tweet: A friend shared the photo with the single strapline 'wtf' and there followed several comments along the lines of … Continue reading It ain’t easy being green

The long haul

The world is closing in around us. Around my son, his siblings, and me. My children are all growing up so fast. I can hardly believe Benjamin is four – he’ll be starting school next year. My eldest is already a grown-up P1 girl and loving it. And my littlest is walking, running, and jumping … Continue reading The long haul