Ayden Jane is just on such a roll lately. If you are reading this and you have a child with PWS or another developmental disorder you likely know what I mean when I say she is just in the sweet spot right now. If you don't, I'll do my best to describe what I mean.
With Ayden Jane there is a delicate balance where if I can get her food ratios just right, her food amounts just right, the right amount of exercise, the right amount of sensory input, the right amount of supplements, the right amount of rest.... She can fly through days without a care in the world.
Right now is one of those times. I tweaked her supplements a bit and I think the time change has also helped for some unknown reason. The result, she has been so active with a steady stream of energy and not worrying about food. We have had meals as far off from her general typical meal time as 2 hours and not even batted an eye. She has turned down snack twice and chosen to put off meals until later... then not even bothered. Her brain is sharp. Only negative at this point is I am exhausted at the end of her day.
She had a wonderful day yesterday at a friends birthday party. It was a big, crowded, fun place with lots of things to touch and do. She played laser tag, climbed on the ropes course, flipped upside down on a crazy bike and generally had a blast for 4 hours. After we came home she had a coconut square and hit the neighborhood. I had to run a few errands and did not get back until after 7. She had just come in and started supper. Then she wanted to walk the dogs!!! Yep, a mile and a half later and 1,000,000 words later we were back and she got ready for bed. Whew.
If I could write up a formula for exactly the amounts of each of theses things she needs to make her stay this way I would but that is part of why this kid is challenging. Her needs change as she grows. The needs change and you can't quite put your finger on it. At first it just seems like she's tired, or allergies are bothering her, or it was just a long week or.... Eventually, you decide it is not temporary and then have to figure out what is the cause and how to address it. I'm not saying the difference between functioning and not functioning. I mean the difference between doing good and doing great. It is subtle and I tend to obsess and drive myself crazy. Sometimes I am nuts and I need to leave well enough alone. Other times, like this one, my suspicions are totally spot on and we almost get a break from PWS. I allow myself to relax for a while and Ayden Jane enjoys a stretch where things come easier.
Long live the sweet spot.
With Ayden Jane there is a delicate balance where if I can get her food ratios just right, her food amounts just right, the right amount of exercise, the right amount of sensory input, the right amount of supplements, the right amount of rest.... She can fly through days without a care in the world.
Right now is one of those times. I tweaked her supplements a bit and I think the time change has also helped for some unknown reason. The result, she has been so active with a steady stream of energy and not worrying about food. We have had meals as far off from her general typical meal time as 2 hours and not even batted an eye. She has turned down snack twice and chosen to put off meals until later... then not even bothered. Her brain is sharp. Only negative at this point is I am exhausted at the end of her day.
She had a wonderful day yesterday at a friends birthday party. It was a big, crowded, fun place with lots of things to touch and do. She played laser tag, climbed on the ropes course, flipped upside down on a crazy bike and generally had a blast for 4 hours. After we came home she had a coconut square and hit the neighborhood. I had to run a few errands and did not get back until after 7. She had just come in and started supper. Then she wanted to walk the dogs!!! Yep, a mile and a half later and 1,000,000 words later we were back and she got ready for bed. Whew.
If I could write up a formula for exactly the amounts of each of theses things she needs to make her stay this way I would but that is part of why this kid is challenging. Her needs change as she grows. The needs change and you can't quite put your finger on it. At first it just seems like she's tired, or allergies are bothering her, or it was just a long week or.... Eventually, you decide it is not temporary and then have to figure out what is the cause and how to address it. I'm not saying the difference between functioning and not functioning. I mean the difference between doing good and doing great. It is subtle and I tend to obsess and drive myself crazy. Sometimes I am nuts and I need to leave well enough alone. Other times, like this one, my suspicions are totally spot on and we almost get a break from PWS. I allow myself to relax for a while and Ayden Jane enjoys a stretch where things come easier.
Long live the sweet spot.
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