The word "ableism" is used an awful lot these days, but do you know what it actually means? An "ableist" is someone who holds discriminatory views about people with both physical or learning disabilities, often of the opinion that they need to be "fixed". But where did ableism come from? Where did it start? I'm [...]
Is it wrong to grieve when your child receives a diagnosis?
I often sit and read arguments online about whether or not it is wrong to go through the grieving process when a child is diagnosed with a disability. It saddens me so much as what I often see are parents desperately trying to understand what is happening around them whilst being penalised for having any [...]
Prognosis: is it mind over matter?
Recently I was accepted on to a healthcare study by the NHS. I'd been suffering chronic back pain since being pregnant with kiddo, and six years on I still hadn't managed to improve it. I met with the researchers and the first thing they asked was, "what have you been told about your back pain [...]
When do I get to feel safe?
Since I started to self identity as a parent carer 4 years ago, one thing has astounded me more than most, and that's how quickly things can change. On the left was me just over a week ago. Yes I'm totally sleep deprived and wearing a lot of make up, but I was stable. A [...]
The effects of “inner stress”.
This morning I'm suffering of a build up of what I call "inner stress". Everyday for the last 2 weeks, the transition of school drop off has been really hard for kiddo. Once he is there he loves it! But he finds most transitions extremely stressful. Over the years I have learnt how to cover [...]
When I first met the Clinical Psychologist
This morning I had an appointment with a clinical psychologist. Not for kiddo this time, but for me. It was a very weird sensation turning up to an appointment of this nature for free because the NHS had deemed me worthy of support. Nonetheless, I was extremely grateful. We chatted for a bit, me tripping [...]
Completing the next level.
I often get messages from readers asking me how to cope with stress, anger, injustice etc. Those of you familiar with the systems that assess families with disabilities for funding, services and support know how infuriating it is. We are incorrectly assessed on a regular basis, delay tactics are used frequently (eg. You MUST attend [...]
When the noise of daily life finally dies down…
Sometimes the hardest days aren't those where our children are driving us to distraction, finding mischief in every corner, breaking things or keeping us awake at all hours of the night. Sometimes the hardest days are the ones where you're not responsible for them, even just for a little while. Your mind isn't in constant [...]
Walking a tightrope
It's only been the last few months where I have really started to take my M.E. seriously (or chronic fatigue syndrome, CFS, whatever you want to call it). Recently the NHS sent me for an assessment, they asked me so many questions about my childhood, habits I had, my teenage years etc. I couldn't see [...]
Dear Son…
Dear son, It's 4am and I'm sat watching you play beautifully with your trains. It's been a really hard 3 weeks for you. We decided to try some medication to see if it would help you sleep better. You had been struggling for so long and we couldn't stand to see you in such emotional [...]
