Ever been at a work’s do and introduced a colleague by listing off their current ailments? “Hi, Steve, this is Bob. He has a stammer. Bob, meet Steve, he’s can’t sit for long because of his massive piles.” Of course not. I don’t introduce myself as, “Hi, I’m Rachel. I broke my wrist last year, ruptured [...]
Medications 7 times through the day and night isn't cancelled. 24-hour PEG feeds aren't cancelled. Hoisting and toileting isn't cancelled. 24-hour postural care isn’t cancelled. Personal care isn't cancelled. Cooking, cleaning, educating, playing, resting isn’t cancelled. Contacting and negotiating with professionals isn’t cancelled. Visual stimulation, sensory stimulation and active movements aren’t cancelled Trying to keep your [...]
Ever feel like you are losing control? One of the first things to disappear, when I became the parent of a child with complex needs, was a sense of control. Once I foolishly thought I was the master of your own destiny. Suddenly, the weeks ahead of me were moulded and shaped by a growing [...]
I’m not sure where to start because there are so many of you. Maybe you’re one of the many therapists (OT, PT, SALT) who collude and agree when it’s best to meet and then ask I adhere to your agreed date and time. Please know, I’m grateful for your input, skills and knowledge. I know [...]
The glare of the theatre lights warmed my skin yet my body shook. The cesarean section was about to start. Everyone was poised, ready to carry out their designated duties yet I felt inadequate and out of my depth. I’d been in this environment before but this was different. Suddenly I wasn’t a face amongst [...]
In our family, we have sorry rules. Sounds up tight, I know, but wanted 'sorry' to be meaningful and helpful, not flippant and reactive. Sorry was being said too easily without thought and was quickly becoming meaningless. The sorry rules are simple and I stole them from Cuppacocoa parenting blog about A better way to say [...]
Getting the best out of your professional is the title of a workshop I developed for parents like me who have children with additional needs. Some people, particularly practitioners, may wince at the title. Yet families like mine are often referred to as clients, case-load or service-users. Seeing the table turned shines an interesting light [...]
“Our recommendation is that you never feed your son orally again.” These words were spoken to me as I sat wedged along a corridor at Great Ormond Street Hospital. No box of tissues. No comfortable sofa. Less than ten words were used to inform me that my son would never eat another birthday cake, [...]
Some lovely people (probably my parents) have nominated me for the category of ‘Making a Difference’ at the BAPS blogging awards presented by Bringing us Together. It got me thinking, how do I want to make a difference? Firstly, the difference starts at home. There is no point in me speaking and writing to inform [...]
On 29th November I was privileged to speak on behalf of parents at the Disabled Children's Partnership manifesto launch at Parliament. It was fantastic to see so many charities and influential people recognising the struggles families like mine face daily. It was refreshing to feel seen and heard, that people are acknowledging the #SecretLivesofUs and wanting [...]
