Monday, May 27, 2013

PWS Awareness Day #27: Supporting a PWS Family


As you can imagine from what I've posted already, PWS is not just about the person who has it, it's a family way of life. Here are some things you should know about families with a loved one with PWS and how you can support them (or, if your family has a relative with PWS, how you can be supportive):

1. Understand the importance of following food routines. I can't underscore this enough. Adults are used to responding to a child who asks for food - it's how we're wired, and that's a good thing! We take care of others who are hungry by fixing something to eat or putting a piece of something nearby in their hands to nibble on. Unfortunately, *this is not how to care for someone with PWS.* The wrong food choices or breaking food routines are actions that can affect that person's behavior, weight, and metabolism. This includes offers of healthy foods or the dreaded "it's just one bite, surely that won't hurt?" Some people with PWS are on diets of as low as 600 calories a day (!) to maintain their weight; "only one bite" can make that much of a difference. Families with PWS have worked tirelessly to maintain this way of feeding their child, so being supportive in this way is invaluable.

2. Siblings deal with certain pressures, whether it's the constant attention to any sibling with special needs (therapies, medications, surgeries, etc.) or more PWS-specific concerns like having to deal with their own food being locked up (since it's locked for everyone; some sibs get keys or codes to the locks so they can get in the fridge or pantry when necessary) and being held to the same food schedule as their sibling with PWS. Know that when you have these siblings over your house, it *is* ok to feed them. Their metabolisms and hunger mechanisms are not broken. Offer to babysit the sibling(s) so parents can spend one-on-one time with their child with PWS outside of doctor's appointments, therapies, or the hospital. Even more so, offer to babysit the child with PWS so parents can spend one-on-one time with the sibling(s). They deserve extra attention as well.

3. In response to the last suggestion in #2, know that it's not always a straightforward matter to babysit someone with PWS, or for older kids, for them to come over for a playdate. If you do, you must maintain the food routines. PWS parents are happy to pre-pack food and let you know appropriate eating times. If families are reluctant to come to your house for a playdate or for the whole family to come, don't take it personally! It's just hard to control the environment outside of your own home and can cause extra stress to the parents and the person with PWS. Be willing to be flexible.

4. Ask us about PWS. We're not afraid of talking about it, and it's not like you're going to remind us of something we're not already thinking about. We want to tell you about the adjustments we've made for our loved one with PWS, and we want to share with you their amazing character and accomplishments!! It means so much to have an ear to listen.

I'll stop there because this is getting long! Ask away if you have more questions. :)



4 comments:

Anonymous said...

Thanks for your story.PWS affects me in 2 ways. I have a 7 yr old grandson with it. And also I work work a 19 yr old young woman in a transitional classroom. Many challenges!!

Giulia said...

Ali,
The core of these invaluable suggestions work also for other conditions :-)

For people who babysit a person with PWS, I can suggest to caregivers to prepare a portfolio like the one suggested by the PWSA : http://www.pwsausa.org/Educator/schoolPortfolio.htm
I know that this portfolio is conceived for a school setting, but a portfolio can also help the host family to know what to do when a meltdown occurs, or how to deal with food issues... It can relieve stress as for the parent as for the host family.

Call me crazy Ali, but your post brought me straight away to this idea.

The core idea of a portfolio can even work for other disabilities :-)
This model is not written in the stone: the more personalized, the better :-)

Did you think about preparing one for Dean ?

Ali Foley Shenk said...

Giulia,
Absolutely! It can work for any condition. I think people can't know how to treat a family with a child without special needs without us letting them know, you know?

I have a template for a portfolio that several other families have given me to use for Dean. I'm going to get one ready for him so that when he goes to kindergarten, it's all there for him. Currently, in his IEP (Individualized Education Program), there is a narrative that we and his teacher have written up about Dean so that others know what is important to know about him. My hope for the one that I am going to make is to put pictures in it as well so that people remember that it is a *person* they are taking care of, not just a diagnosis. :)

Ali :)

Melanie Silverman MS, RD, IBCLC said...

I loved this...Beautifully written thoughtful and true. Thank you for sharing this. I will share with others...