Checklist

I don’t know what it feels like.

My daughter has Prader-Willi Syndrome and it affects her life and our family’s life every day, but I don’t know how it feels inside her head.

I don’t know what it feels like to be hungry all the time. I don’t know what it feels like to have anxiety levels that can be overwhelming. I sometimes imagine her worries to be like a swarm of bees, humming and buzzing in the background, but I don’t know what it feels like.

Flip the coin, though; I do know what it feels like when I watch my daughter cope, and I do know what it feels like when she surprises me.

Like today, when she came home from college, beaming, showing me a booklet she’s been working on with her tutors about mental health awareness.

“I did really well today, Mum. Look at my big list of anxieties I made.”

Shout
pacing
shut down
fidget
crying
shakes
freeze
faint
not talking

random words
stomach turning
blood heart go quicker

My first thought was "That sounds like my symptoms after a hen night involving ill-advised consumption levels of tequila", but my second thought was "That’s a pretty self-aware list".

She was really proud of herself for writing out the feelings and ways in which her anxieties manifest themselves. (Although she’s never fainted, so quite where that one came from I don’t know). And I felt proud too. It’s actually a pretty good check-list, and a demonstration of the very different ways in which her mental health issues can surface.

It’s a bit weird, isn’t it, a parent and a child smiling at eachother and high-fiving over a long list of ways she demonstrates being upset? 

But when it comes to PWS, weird is normal and normal is odd. I can’t get inside her head when she’s being amazing, brave and strong, but I really hope it feels good in there. It should. 

We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionals who work with them. To find out more about the condition and the charity click here .  If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.

Song is Ty Segall - Feel

Social

A social worker called on us yesterday. 

Before you ask, we weren’t in the midst of a family breakdown, although by the time we get to the second half of the Christmas holidays it’s always a possibility.

I’d called the local Social Services Child Disability Team a few weeks ago, as I was preparing to get my head around the ‘care’ section of my daughter’s new EHC (Education Health and Care) Plan (the new document that will be replacing her Statement of Special Educational Needs).

The plan will be reviewed annually, but will be in place for her right up to the age of 25, so I really want this first one to be a thorough document that covers all the bases. She’s reached the age of 16 without us ever having any dealings with social services, but I felt the time was right to find out more about what support they could potentially provide. So I met up with the social worker last week, and she arranged to come and talk to my daughter yesterday.

“Why is she coming?” my girl asked me.
“Do you know what a social worker is?” 
“Yes, it’s like in Tracy Beaker, isn’t it?”, she said, referring to Jacqueline Wilson’s fictional character whose flighty mother regularly abandoned her at a care home called The Dumping Ground. I’m many things, but flighty ain’t one of them, believe me.
“Ah, yes. Well, that’s just a story, and there’s no way I’m dumping you.”
She looked disappointed. I ignored this, and continued: “Well, social workers are a bit like the ones in Tracy Beaker, I suppose, because they help children and young people.”
“OK.”
I took this to mean she deemed the visit was acceptable, and it turned out to be just that.

The social worker was friendly, and stayed for quite some time, allowing my girl to get over her initial shyness. She was treated to a detailed breakdown of the Christmas Tower Of Presents. And she asked my daughter lots of questions, putting her at her ease, speaking to her not at her, giving her plenty of time to answer, and listening carefully. She’s going to arrange to see her at school, too, which my girl was ever so slightly thrilled about.

“Well, what did you think?” I said, after our visitor left.

“Yeah, all right. It was just like in Tracy Beaker, Mummy.”

I’ve scooped my girl off to The Dumping Ground of her bedroom tonight, tired and happy after another visit today. This was just a social call, not a social services one, to see Scarlett, an adorable tot with Prader-Willi Syndrome who lives just 15 minutes away from us.

We went for sunny, chilly walk. Scarlett was snuggled up in a nifty backpack carrier, whilst siblings/dog checked out icy play equipment/pooped, in that order, you'll be pleased to know). We returned indoors, downed some scrumptious home-made soup, and played Monopoly. I got my usual baby fix, jacking up on a long cuddle, thinking how the world of social care and EHC transition plans is in the distance for Scarlett, and how her world is currently weighted more on the side of signing, physio and a walking frame - like my daughter's once was. 

Different stages, rolling on, all connected. 

Song is Ty Segall - The Connection Man