I think now that we are close to suceeding. But I say that, knowing full well, that as the saying goes, "there's many a slip twixt cup and lip" and plenty of time for things to go wrong. I don't think one can ever say, "hooray, we've worked that one out - finished, completed!" Because in the world of PWS life is not a stroll across the meadows. Rather it is fraught with things to trip us up, therefore the way we live is to prepare for the worst. It takes some of the joy of just "living" out of life. But that is the way of it and we all do it, and in 97 countries who are members of IPWSO, I know there are parents going through exactly the same sort of thing. Night and day.
Sometimes I feel as though I've truly had enough. And it's no help to remember 'there are others worse off than yourself'; right at that moment, it's the most unhelpful advice there is. I feel like the little dog, condemned to death, who just needed a hug: Have a look at her and you will know what I mean. Just a hug, that's all. (http://www.godvine.com/Meet-the-Scared-Dog-That-Only-Wanted-a-Hug-1087.html)
Sometimes I feel great joy in seeing how others can overcome disability and show the most perfect ability. Like Kyle Coleman, who has autism and is speech-mute, but can sing like an angel. He has perfect pitch. Just look and listen to this young man. This is what his mum says about him: and you can hear him sing his trademark song, "Just Listen", but a better rendition is on his own website where you can hear him sing, 'Lady D'Abanville' and 'Sunny Afternoon' Isn't it wonderful that someone just listened?
I've always said it's about listening - if you don't really, really listen, then you don't hear what the person is saying, particularly if that person has a disability. The first thing that is different is the way they communicate. If you don't listen, you will never, ever hear.
And, even for those of us who can communicate, talk, write, speak to many, and seem completely confident in this world - there are times when they need to be listened to as well. We're not that strong.