Although a disabled is a joy, a blessing, a gift, and above all still a child, navigating an ableist world when your child is disabled is exhausting, expensive, stressful and soul-destroying.
undiagnosed children’s day
Don’t fight it
It’s about sharing the highs and the lows, having a laugh, making friends, sharing a love story.
Captain Endurance and the Imperturbable Girls
I have to admit, I’m not really up on my superheroes. I understand things have moved on a bit from Thundercats (I wasn’t allowed to watch He-Man and the Masters of the Universe because it was on ITV and therefore infra dig). I’m painfully aware of the PJ Masks, thanks to my six-year-old and YouTube, … Continue reading Captain Endurance and the Imperturbable Girls
Misfit
Is it just me? Every time I hear or see the phrase ‘Dress like a detective’ (that’s every day this month then, as I’ve been doing the SWAN UK Instagram Challenge), I want to sing it to the tune of ‘Walk like an Egyptian’. No? Just me then. That’s okay, I’m used to not fitting … Continue reading Misfit
My second family
I don’t know about you, but I’m secretly glad the school holidays are over. Not because I don’t love being with my kids (honest!). And certainly not because I don’t love the occasional lie-ins, opportunistic ice creams, lazy days in the garden and not having to make packed lunches (the smell of Branston Pickle just … Continue reading My second family
Bigger, better, bolder
April 29th 2016 is the fourth annual Undiagnosed Children’s Day, and it promises to be bigger than ever. It’s the third UCD since our own undiagnosed child, Benjamin, was born, and only the second since we found out that Undiagnosed Children’s Day and the initiative for undiagnosed children, SWAN UK, existed. A fitting time to … Continue reading Bigger, better, bolder
Sometimes I just don’t know who to call…
To the many professionals involved in my son’s care, Thank you. As you know, Benjamin, in common with most other children with rare, genetic or undiagnosed diseases, has a complex array of physical, medical, mental, behavioural and social problems, arising from an unknown underlying cause. These issues are clearly co-occurring and interrelated, but determining how … Continue reading Sometimes I just don’t know who to call…
The wobble (a post for Undiagnosed Children’s Day)
“He takes such a lot of care.” “He’s so unresponsive.” “It’s thankless. He never gives anything back.” “What does he mean when he cries?” “He never does anything but cry.” “Does he like it when we play with him?” “Can he see me?” “Does he love me?” “Does he know who I am?” “What are … Continue reading The wobble (a post for Undiagnosed Children’s Day)
The long chain 