As time goes by I’m going to try and give you a true in site as to how we make living with anxiety, on the move, work for us all.
As you may know most people with Prader Willi syndrome also have varying degrees of anxiety. We’ve read that change would be hard – and it’s so true, especially for Isla. As she’s developed through the years she’s become more aware of what’s going on around her, therefore more concerned and anxious about general day to day day things.
The bonus of having a mobile home (so to speak) goes without saying, and no matter where we are, she always has the reassurance of getting back to our bus for some time out, and back to her familiar surroundings that she call’s home.
Once again a simple coffee and snack all seems straight forward – but as we- in the PWS community know, it needs planning, but normally ends in a disaster, so this it how we make it work for us.
As we travel we love our outings to the local coffee shops and need to keep boundaries are very clear, we normally have a coffee, and the girls have a fluffy milk of some kind, (no marshmallow), and any shouting or anxiety dramas, Isla gets nothing ! sounds harsh but seems to work well. Any bonus snack decisions, then there really lucky. Simple really – clear boundaries – what most kids need- conditions or not.
We’ve been doing a LOT of socializing as we’ve traveled, visiting old, and new friends, and others living with PWS. Normally something like traveling to a new place would seem quite exciting to most people, well we do our best to make it this way. Firstly Isla would be concerned as to when she’s next going to eat, and “what times lunch?”, along with a millions of repetitive questions like, “where we’re going?” and “whos going to be there?” .Well, for this one, we clearly explain every detail of the plan to put Isla’s mind at rest and try and put a stop to the repetitive questioning. but if there’s a change of plan – well the prosses just starts all over again ! Isla’s incredibly, social and very excited about whos she going to meet next, but sometimes the unknown can be a bit too much for her. So our outlook on it is to encourage acceptance of change, and excitement of the unknown.