I just felt I have to enlighten some complications we go through on a daily bases. Our updates of our blog are true to what we do but I don’t really fill you in on behind the scenes very often – so here you are ……
The main thing that keeps us strong is the LOVE we have for Isla and of course Lola too – to help us navigate through the tricky food related complications relating to everyone living with PWS . So as tricky as it gets from time to time the LOVE will always shine and help us through.
OUR FOOD IS LOCKED -I think you already know but our kitchen in our bus and in our home is locked so at least this limits Isla’s anxiety while in her comfort zone of home. Making it safer for Isla and much easier for us to manage too.
SOCIALE MEAL TIMES – is another story, as anxiety heightens dramatically around food, especially in another kitchen where foods unlocked, and not as straight forward! We find the most important thing to do- is basically never leave Isla alone in this situation!. If I was to leave the room or house I’d dedicate someone to keep a general eye on her. I normally serve Isla a little plate of food, then try NOT to sit her in front of a table full of food !.Isla always eyes up other peoples plates, and discusses what everyone else is eating – she wants what they have, or more! then when finished I clear the food away so as its out of sight, and out of mind or remove Isla front the food area altoghter.
PIC-NIC’S- Whenever we have a picnic the right amount must be taken and its best to make sure it’s all eaten so there’s no anxiety of endless questioning of when or who has the left overs.
LUNCHES AT SCHOOL- This is one of the reasons Isla needs her teacher aid to protect her from the temptation of the other children’s food dotted all around the school in the kids bags ! She’s assisted during snack and lunch times and of course the kitchen is also kept locked there too. The other children are aware that Isla can’t eat any of their food, and not to shear. So the school are doing a wonderful job and now that Isla has the support she needs I’m very happy and confident she’s in safe hands.
MARKET SHOPPING TIME – Gone are the days of a relaxing family stroll around a market place. For Isla all she sees is food and people snacking left, right and center ! once again she’d want what they have, and if I was to turn my head for a seconded she’d be asking some very kind, giving person for food, or a piece of fruit ! yes I know fruit is good for us, but its the anxiety and planning that’s going on in Islas little head, so I’d rather not put her though it. So markets are now a no go for us as a family, and supermarkets too – I simply have go alone !
BIRTHDAY PARETIES – are another full on afire in the food department, and overstimulation quickly sets in. The same with most kids at parties, but Isla also gets exhausted from the extra anxiety she has to deal with. Party food is certainly NOT ideal, and I dislike seeing (or for Isla to see) how some kids just stuff there face with part food ! . So unfortunately the kids Birthday Parties need to be chosen and managed with care.
FOOD IS CHANGING IN THIS CHANGING WORLD – feel that the world is a fast changing place, and not for the better regarding food and diets. Where fresh produce is force grown and sprayed with pester sides . We’re mislead so much – is organic, really organic ? Animals are another story where we only know the half of it ! also were peoples food is defined by the time they have to prepare it, and often of poor quality and not always what it says on the packet. Some foods available on the supermarket shelves are so heavily processed and modified it can hardly be classed as food ! preserved and sealed in even more plastic ! what’s going on? its’ all changed so fast. All we can do now is our little but for our family here and now. I’m looking forward to getting our veggie garden up and running again which is exciting. It’s only a small patch in our garden but it’s surprising what I get from it, supplying some organic fresh produce for my family.
PEOPLE WITH PWS – As you might be aware that people with PWS need to have a healthy diet as there metabolism is different, so fats and sugars aren’t used up in the same way as us. Then with the double whammy of having low muscle tone makes exercising much more tiering for them – so needless to say that it’s very easy for them to put on that extra weight, so close attention to diet and exercise is nessersery.
To round off I’d like to add that after having Isla in our lives it’s made us really step back and look at our diet and the general food of this era in more detail, We look at this as a gift in itself – We do our best as parents and continue to learn together as we navigate this journey of life, and the fuel ( food ) we need to live it.