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Our FPWR UK Full Story – Entry 1

In our first FPWR UK Full Story submission we have Isaac’s mum Emma discussing their journey with the different behaviour symptoms PWS can throw at you, strategies they have tried and how things have changed as Isaac has got older. Thank you so much for sharing Emma. 

Isaac is 9 and is quite a calm child (we call him Mr Happy) he does get anxious, and it shows in skin picking and biting his fingernails. We don’t have many meltdowns often but when they do occur it’s usually been due to a chaperone change on his taxi; he really doesn’t like that. When he was younger this would be him pulling artwork off the walls in class in the afternoon and crying. This was before he could communicate properly so now you just get increased anxiety but as long as you get him to introduce himself to the new chaperone and they introduce themselves it goes much better.

We’ve only had one serious incident at school where Isaac cracked a window when he slammed his water bottle into it. It was very unusual of Isaac to lash out like this, and he was very contrite afterwards. It took me and Isaac’steacher to unpick the week to see what had caused it. We realised there was a lot of change that week, upcoming harvest festival performance, new TA in class, new chaperone. So, it all built up til Isaac popped.

Now if things don’t go the way Isaac would like them too, he generally just tips his head back and wails at the sky or ceiling. He’s able to use a safe space, (usually the hall or the cozy corner at school) to calm himself and then he will come for a cuddle.

If it’s something unexpected like being hit with a balloon which set him off, I was able to diffuse the situation by quickly asking him to breathe in slowly, breathe out slowly and then count to 10. Telling Isaac to take a deep breathtends to help when he’s getting overanxious.

The most usual way Isaac shows anxiety is increased questions….so many questions. Or sticking to the same topic and talking it round in circles. That really drives me bonkers lol. He’s allowed to ask a question 3 times then he is told to change the subject. Same as if he’s got stuck on a subject, though that doesn’t always work. I’m so glad he’s moved on from going on a bear hunt! That was stuck topic for 3 years. It’s now Power Rangers or Pokémon!