Friday, March 9, 2012


This is a personal post, nothing to do with IPWSO, yet everything to do with us all.  These past months have been, for me and my family, difficult.  We have been trying to get our daughter back into the residential system and nearly everything has contrived to go against us.  The more that things didn't work out, the larger the conspiracy seemed to become and the slower the wheels seemed to grind.  Of course, it is not a conspiracy, it's just the way things happen in real life.  Or don't happen.  And in the world of disability, wheels grind even slower.

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. (

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.


  1. Having had a daughter with a disability with P.W.S. I do understand every word you have said.As years go by, this ignorance towards special needs must have to only improve,now the world is slowly being made aware.But unfortunately will be slow.While the ignorance is still very much with us and the not wanting to know this disadvantage life we families have to live, and indure will take time.Human Being on the whole do reject imperfection "big time" it is such a shame.This is what causes people to NOT want to listen to our loved ones.
    But for the CONSISTANT help of those few people in the world (some with Disabity members in their families ) give many hours of their time, to hopefully make the journey for those who are Challenged in life with having to overcome their life of having a disability. This Story is very true of many who journey this life.

  2. Thank you for sharing. I'm not going to offer you any advice: I just want to say that you have been listened to.

  3. A hug ... someone to just listen, to hear ... respect. Yes, that is what our children/adults with disabilities really need. And we as parents find it exhausting 'being' their voice. We see the beauty, the fight worth fighting. Thanks for sharing ~ I am listening too.

  4. thank you. I really needed this tonight. My daughter is 11 with PWS and we had a particularly rough evening, being judged by friends and family.

  5. I also understand. No advice but I understand as my son has PWS. It's a rollercoaster. Full of ups and downs. I wouldn't trade it...I just wish I had more energy.

  6. Thank you to all who responded. It's good to know that around the world there is understanding and there is support. Now all we have to do is 'grow' this up from grass roots level to those who really can make a difference - right the way to government level.
    - Linda