This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers. Appointments
The appointments. Oh, the appointments. It used to be filofax companies, but now it’s Smartphone calendar app makers that we keep in business.
There’s the district nurse, and the consultant paediatrician, and the physiotherapist, and the geneticist, and the endochrinologist, and back to the consultant, and the height/weight nurse, and the orthotics specialist, and the Portage nurse, and the consultant again, and the A & E doctor, and the Special Needs Education Co-Ordinator, and the educational pyschologist, and the dietician, and the master plaster caster, and the surgeon, and the ortho chap, and the physio again, and the dentist, and the teacher, and the teaching assistant, and the consultant, and the endo, and the physio, and the SENCO, and the foot woman, and the back guy, and the substitute consultant that hasn’t got a clue, and the GP who’s ‘in charge’ of all the notes but who you never actually see because you see the specialists, and the consultant, and the research student, and the social worker, and the orthodontist, and the endo, and the transition person, and the consultant, and the whatdoyoucallher and the whatshisname and the rest of them, and there’s no rest from them, and you just want to tickle along and not feel like you need your own private bleedin’ parking space in the hospital, and it’s always on a work day, and you’ve never got the right change, and sod’s law you’re back again the next day to the same place, but then it’s a different hospital, and then they’ve lost your notes, and then you feel like standing in the corridor and yelling: "ENOUGH!"
These are the appointments you have when you have a Prader-Willi person.
They come in batches at different ages, and you do get to have a bit of a break, and then you get to have a bit of a spate.
The Spongebob diary is a source of great happiness to me.
It’s a notebook (which my daughter decorated herself with a drawing she did of Spongebob Squarepants). It’s filled in every day by her teachers or teaching assistants, who use it to let me know what she’s been up to, tell me about things she’s enjoyed, things she’s struggled with, and any problems that have arisen. They also use it to inform me of any activities coming up which involve food, so I know what she’ll be having and can adjust her snacks accordingly, or provide a low-fat alternative if needed. I reply, and it works well as a quick, easy channel of communication between us.
But it’s the incidental things I like the best.
Here’s a selection (Nanna and Grandad feature quite heavily):
“We were talking about names today, and she said ‘When Nanny is calm, she calls Grandad Mike, but when she’s angry she calls him Michael and he goes in the garden.’”
“We have had strict orders from her to write in her book that she would love a foot spa for her birthday.”(!)
“We are encouraging her to choose something else other than Hello Kitty, which did not impress her much.”
“She was very talkative today and told us some more amusing stories about Grandad falling asleep and spilling coffee on Nanna’s new carpet.”
“We looked at products that change today, and had a bit of messy time with shaving gel. She told us: “You’ll be in trouble with my mum because she’s just washed my jumper.’”
They’re just little snippets. But what I like about them is that I can hear my daughter’s voice. When her teachers describe her day and how she’s reacted to certain things I recognise her personality and her behaviour. She’s being herself; she’s acting in the same way at school as she does at home. I find this hugely comforting. And I’m confident the staff at her school ‘get’ her. They seem to know what makes her tick, which goes a long way towards making things tick along more smoothly.
It's not all sweetness and light. But there’s a phrase that - thankfully - is common to the vast majority of entries: "She had a good day today".It’s a simple sentence. But it’s a damn fine one.
This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers.
