Friday, 25 January 2013


We’re going visual.

We’ve had two peaceful nights and a successful couple of days in getting my daughter back on an even keel after phantom night-pirates hijacked her and temporarily left a small banshee in her place.

Thankfully, she seems to have been swapped back.

A decision to use more visual aids and prompts in an effort to focus her thoughts and answer her questions seems to be helping.  

People with Prader-Willi Syndrome don’t have very a good short term auditory memory. So a long discussion about why she shouldn’t behave in a certain way and what she should do instead is going to lose her attention before any important points have sunk in. To be honest, I haven’t got PWS and I nearly nodded off before the end of that last sentence, so I can kind of sympathise.

So, at the suggestion of her teacher, we’re making cards and pictures and visual representations of IMPORTANT STUFF. Things like how tall my daughter is in relation to her friends. How many teeth her cousins have. You know, the usual things a 14-year-old obsesses about. Well the usual things this 14-year-old obsesses about.

The Tooth Count Card, in particular, is going to be well-thumbed. I suspect it may have had more than a little to do with my girl’s recent wayward sleeping patterns. Because yesterday we had an orthodontist appointment, and my daughter was told she will have to have four teeth out and braces fitted. 

I was pretty pleased with her calm reaction to bad news. Although we already knew this was probably what the orthodontist was going to say, it was still news that my girl didn’t really want to hear. I’d had a chat with the orthodontist beforehand and asked if she could use pictures and visual images to explain everything to my daughter, and she couldn’t have been more patient, or more clear. My girl was miffed, there was no denying it. “I’m not very happy,” she said, looking not very happy. But we kept things simple, kept things calm, and told her that if her teeth were just left to continue growing wonky, then she’d end up only being able to eat soup. Sometimes you just gotta use the food thing. The dentist also provided a picture showing which teeth are going to be taken out. It's there in black and white if Josie asks the question: "Do I have to have any teeth out?" or "How many?", which she will. Many times. 

So I’m ringing round tonight, to get all her cousins who have had braces fitted to tell me a) if they had to have any teeth out and b) to count up how many gnashers they’ve got left. This will provide the raw data for an artwork which won't win any prizes but just might save my sanity.

Blondie - Picture This

Related Post: Book


  1. Visual is a great idea. With Polly who is significantly younger than Josie we have a photo album to show here where we are going, who we a going to we a going to nursery (cue pic of her building) and you are going to see astrid (cue pic of her favourite career).

  2. It's interesting going back to it: we used pictures for everything when J was Polly's age. Makaton signs and symbols were brilliant aids in helping us understand eachother. When her language developed, we didn't seem to need the pictures anymore, but they look like they're going to prove to be useful again!

  3. Hi Carolyn,
    I'm a features writer at Solent News Agency and write features for women's magazines.
    I really love your blog and think you and your daughter would make a lovely feature.
    Is it something you would be interested in?
    Please email me at or if so.
    You would be paid for the feature and get to check it before it was printed.
    Many thanks,
    Laura Routledge

    1. Hi Laura, I'm sorry for not getting back to you - we've had a challenging week and my brain's filing system has been jumbled up! Thanks for your interest and kind comments about the blog. Ordinarily I would be happy to be involved, and donate any payment to the Prader-Willi Syndrome Association (UK), but my daughter's sudden behavioural issues and lack of sleep mean that neither of us can really think about doing an interview at the moment. I'd be happy to in the future when things settle down a bit, or if you want to do something on PWS sooner, I'm sure PWSA (UK) would be able to put you in touch with another family. You can contact them through their website