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 [...]
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 [...]
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, 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 [...]
One of the questions I get asked the most frequently is, "how did you grieve and come to an acceptance that your child wasn't neurotypical?", or words to that effect. People seem to want to know the answer on how to just "be fine", and they want to know how to get there quickly. All [...]
Starting Monday 20th May, I will be focusing my social media pages on autism in women and girls for a whole two week campaign. "The Unseen Autistic" will tell stories written by autistic women, autistic girls and parents of those who have spent years trying to fight a failing healthcare system. We will be looking [...]
I felt every one of these words. A powerful blog from Life with a Livewire. I used to have a Fitbit, and yes my heart rate was higher when out and about with kiddo. Not because of him, but because of ignorant parents. I dont wear it anymore.
I’ve had a break from blogging and I’m afraid my first blog back isn’t a very light one but it is what’s on my mind (I wrote it in my head at 3 this morning) so here we go. The next will be a proper update on our gorgeous Taz, I promise.
Seizures aside, one of the most painful elements of Taz’s disability is her challenging behaviour. Less euphemistically: when she hits, pulls hair, scratches or (occasionally) bites others. This is a sensitive topic and an issue not talked about enough. I know this from the reactions we get (the most painful part) which tear through me, causing pain in very different ways.
Like many children and adults with a learning disability, Taz can express ‘violent or challenging’ behavior. Most commonly this is her lashing out to those she is closest to for usually predictable reasons (someone in her space…
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