Ayden Jane has PWS. Not a news flash, but it is a fact. She is more mildly affected by PWS than many/most people. Again, not really something that will stop the presses. I stay involved in the PWS community because we do share a view on life that is hard to understand if you don't live it. I sometimes worry, though that the incredible success AJ has in so many areas serves as a reminder to many that there child.... rather than as an encouragement. I can truly say that I have fallen for the kids I have met. There is something about them that draws me to them and I love to read of their successes and cheer for them.
On the flip side, we do have struggles dealing with life with PWS. Just different worries... Ayden Jane is up and running and independent, but that just gives her the ability to get into more. She is in preschool and loves it and is social. She is invited to parties... All things I hoped for, but they lead me to try to figure out how to let her be 'typical' without actually being typical. How much do you tell people. I don't want to scare them off, but I need to be sure AJ is safe. I am thrilled it looks like AJ will be in regular classes as she grows, but how will she handle the social nuances of middle school. That is hard enough with out the added challenges. You get the picture. Life for us from the outside, looks like Ayden Jane is no different than any other 3 year old. Again, I am ectastic! But, how crazy do people think I am when I limit the foods she is eating...
She has worked so hard to keep up. I just want her to be able to the life she has worked so hard at and not sound like I am a constant dark cloud.
I think you might straddle the typical and PWS worlds more than some others do, and like you're saying, that comes with its own set of issues. I remember reading about adults with PWS who have above normal IQ and how that seems like it might get them "off the hook" on certain PWS issues... but instead, one thing it means is just that they're THAT much more creative in finding ways to get food. In other ways, no one gets away completely scott-free, it's just a different type of battle. Which I guess in some ways is life, but PWS defines the battle lines in a certain way.
ReplyDeleteI have to admit that sometimes, although I obviously don't WANT Dean to have delays, his delays for now maybe give me a little more "credibility" (even if it's fake extra credibility) that the things I'm saying about his food needs are legit. Does that make any sense? I figure that if they can see things that are different in some areas, it's easier to accept that their might be something different in another area (like diet). If at some point Dean's delays change and he is more typically-developing than he is now, I'll be working out this issue all over again.
I think you're doing a great job, and no matter what, my guess is that some people *will* think you're nuts. They won't get it. It's an annoying reality of our role in dealing with PWS, maybe at times more annoying than the actual manifestations of the syndrome itself.
All right, I wrote a novel. I just have a lot of thoughts about this topic. lol