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Why I am PROUD of my son’s attendance award.

By |2020-07-17T17:50:13+00:00July 17th, 2020|Categories: Uncategorized|

“Why my son won’t be accepting his 100% attendance award” went viral 4 years ago. The photo of one 9-year-old‘s left ear went round the world and was seen by millions of people - along with my rant about how much I dislike 100% Attendance Awards and how, in my opinion, they undervalue community and [...]

“This is Bob, he has piles.” (Co-production week 2020)

By |2020-07-09T21:00:48+00:00July 9th, 2020|Categories: Uncategorized|

Ever been at a work’s do and introduced a colleague by listing off their most recent failures or ailments? “Hi, Steve, this is Bob. He has piles and dropped his laptop yesterday smashing the screen. Bob, meet Steve, he’s can’t sit for long because of his massive piles.” Of course not. I don’t introduce myself as, [...]

Lockdown: Caring isn’t cancelled

By |2020-04-16T12:27:00+00:00April 16th, 2020|Categories: #bridgingthegap, Carers, community, disability, family, Lockdown, Uncategorized|

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 [...]

Losing control

By |2019-01-16T19:11:24+00:00January 16th, 2019|Categories: communication, education, mind the gap, mum of child with disability, Parents as partners, Simple Stuff Works, Uncategorized|

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 [...]

Dear Professionals…

By |2018-10-16T09:38:00+00:00October 7th, 2018|Categories: Uncategorized|

Dear Professionals, 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. [...]

The truth will set you free?

By |2018-10-16T09:40:16+00:00September 19th, 2018|Categories: acceptance, The skies I'm under, Truth, Uncategorized|

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 [...]

I’m so not inspirational, but I know people who are.

By |2018-03-24T21:26:53+00:00March 23rd, 2018|Categories: Uncategorized|

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 [...]

7 Ways to get the Best out of your Professional

By |2018-03-16T19:45:13+00:00March 13th, 2018|Categories: Uncategorized|

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 [...]

“Never feed your son again.”

By |2018-10-16T09:40:31+00:00February 9th, 2018|Categories: Uncategorized|

   “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, [...]

Can I really make a difference?

By |2018-06-07T08:32:45+00:00February 2nd, 2018|Categories: Uncategorized|

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 [...]