Balancing Act - a list of characteristics, or a real person?

One of the most difficult things to deal with when living with or working with Prader-Willi Syndrome is keeping a balance between understanding the person and understanding the behaviour caused by the syndrome.

There is a huge responsibility on parents to be able to supply the information needed while making sure our child is a person first, and recognised in their own right.

Years ago when my daughter was only 3, I learned she had PWS. This was in the days before internet was a feature of our lives, so what I learned about PWS was a long list of characteristics, stuff like: insatiable appetite, constant foodseeking; skin-picking to the extent of septicaemia; rectal picking; stealing money, food, anything; crying jags; swearing. and on and on.

So I looked at my 3 year old daughter and equated her with this long list. I checked things off the list as they happened and waited for the others to happen. I talked to other parents and found out what I had in store for me later. I grieved, I panicked, I anticipated the very worst. I read everything about PWS that I could find. I added a whole lot to my check-list that I thought I would probably have to deal with as time went by.

And I used to give this long check-list to the various schools, caregivers, friends, etc so that they would know what they would be dealing with and how to cope. And like me, they watched out for all the characteristics as they manifested themselves-and added some new ones! It became a Blacklist.

Over the years (and Francie is now 24) I have learned that underneath the Blacklist, there lurks a really nice person. Only, when she was younger, she wasn't getting much of a chance to be that nice kid because the Blacklist got in the way. As early on as Kindergarten I would get calls saying things like: "Francie is chewing on her pencil/falling asleep all the time/not playing with other children. What do we do?"

And, "Francie swore and used the F word/Francie took someone's lunch/won't play sports or games/won't go outside during playtime. What do we do?" Slowly it dawned on me that I was not providing a balance between who Francie is, and what the Syndrome is.

Think about it... we all want knowledge. We all want to know how the Syndrome will manifest itself and what we will have to face in the future. We all want those who will be teaching/caring for our children, to know the same things. So we tell them. And if they don't seem to realise the importance of this, we tell them again.

Sometimes we get it right. Often we get it wrong. We need to look at the balance between treating the Syndrome and recognising the child. It's difficult; I'll be the first to admit! Sometimes there is a fine line between acceptable and non-acceptable behaviours. Often we don't see it. Characteristics seem to get out of hand. Especially when dealing with anger outbursts.

Recognition does needs to describe the behaviour, but it also needs to describe my child. For instance, my daughter might get angry and this anger might be seen as a "typical PWS outburst", but we need to recognise why she is angry; what has made her angry enough to have an outburst. More often than not, it is a case of being misunderstood - either she has misunderstood me, or I have misunderstood her. And, if we're not in the right frame of mind, we don't see it - we don't want to see it, we don't have time to deal with it, and so we revert to the checklist and write off the person as having a typical PW outburst.

But was it? Could it have been avoided? If we'd had the time/patience to step back and listen to what was going on, would we have dealt with it differently? And there's the fine line. No one said it was easy, but perhaps it might be a little less threatening if we try to look for the person beneath the syndrome and respond to him/her first.

Linda Thornton