Tuesday, June 28, 2011

A Narrow Path

This is a guest post of sorts from Janet, mom to Ayden Jane, 3-3/4 (oh yeah, and three other kids, too :)). AJ has PWS and is doing quite well, but even she is not immune to the challenges of PWS. Janet explained well in a post from March on her blog, "Amazing Adventures of Ayden Jane" the narrow path that we as PWS parents walk. Our kids are totally worth it, but it is exhausting. I feel like I sleep with one eye open. Truly, every little bit counts. Here's Janet...
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A Narrow Path
So this may end up making NO sense. I am just warning you from the start. [Ali's note: I think it makes perfect sense, Janet!]

It seems for Ayden Jane, Gary [Janet's husband] and I have a sort of 'narrow path' theory with PWS. It goes like this. PWS affects AJ by forcing her to walk a very narrow path with steep sides. It is like the rest of us have a path where we function best, but our bodies can handle just fine a day or two or even more of 'mistreatment'. You know like, not getting enough rest, not eating well, not exercising... Some peoples path is really wide. You know, the kid that can eat candy and ice cream as his main food groups and stay tiny with tons of energy. And some folks path is a bit narrow so that they do see and feel the effects after a fairly short period, but the 'slippery slope' on either side of the path is not too steep.

In food it looks like this: too little food or even just not the right kind of food and she is low energy. Too much food and she gains weight she cannot afford to gain. Very narrow path to stay on, very quick results if you veer off. So what does this look like in AJ? When she goes too long without a snack she becomes short tempered and/or just sort of stares and is an observer. If she eats too many sugars or carbs from grains, she rapidly gains weight and mentally processes things slowly.

In sensory input: too little activity or motion or sensory input of some kind and her little system gets out of whack. (Like car seat time...) too much sensory input and she shuts down and stares blankly. Surprisingly she does not seem to get irritated with too much input, just overwhelmed on the taking it in part so that she seems unable to respond at the time. Later we find out how much she did take in!

Supplements: I guess this really goes along with nutrition, but when balanced right, make big improvements for AJ. Hard to keep in 'just the right spot.'

You get the picture.... sleep, exercise, attention... all the thing important in the life of a 3 year old. When the balance is good with all, she can do amazing things but it is exhausting for those of us, okay me, who are responsible to keep this balancing act going!

Sorry if the analogy does nothing for you, but I warned ya:)

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