I want to go home now

Once upon a time I never thought I'd hear those words without assuming it meant back home to our house.  They were often said, and most frequently when everyone else was enjoying themselves on a long-planned outing, usually to the beach.

"I want to go home", my daughter would say.  "I'm too hot" or "I'm too tired", or anything that seemed designed to interrupt an otherwise pleasant day.  And so it was that outings became truncated, or even avoided and often my husband would take the older siblings on their own holiday - tramping, or skiing, or out to the beach - while I would stay behind with our youngest, thus avoiding having holidays cut short, or "ruined" (according to her sisters).

Separate holidays in our household became the norm, with me taking the youngest off somewhere for a couple of days special time together (often dropping in on other parents who had a child with PWS), and the older ones having some Dad-bonding time.  It worked rather well - no arguments, no fighting, no locking food away and losing the keys - in fact it's something we still do years later (yes, and we still lose the keys...).  We have the celebratory holidays together: Christmas, Easter, birthdays,  but I've noticed that the youngest daughter (now 29) really struggles with anything over 5 days.  Why?  Well, I think it's because she now has her own home, with her own things around her, her own cat, and staff who genuinely like being with her and don't mind repetitive conversations, lengthy window-shopping excursions, or just hanging out with her.  For sure they have 'off' days when arguments become heated and rules are broken, but she would still prefer to live her own life, visiting our home when she wants to.

It's such a relief to know this is her choice and it's something she is completely happy with.  It's been the best residential option so far and, as she has matured, it seems to have become happier.  The staff are very open with her, and with us, but I no longer jump at the ring of the telephone thinking it will be some crisis I have to deal with.  Best of all, she's lost 10kg this year.  She enjoyed her Christmas, was happy to see her small nephew and niece, was happy with her presents (and the promise of a holiday later in the year), but after 5 days when she said, "I want to go home now", I knew it was not to ruin things, but merely a choice she could happily make.

IPWSO's new FamCare (Family Care) project

IPWSO is exited to tell you about a new venture it is undertaking.  Called "FamCare", it is designed to find ways of supporting families around the world who are caring for their adult child with PWS at home.  We know that there are many of you doing this and looking for answers to questions, or just for someone else to say, "we know what you're going through".

Georgina Loughnan, from Sydney, Australia, who is an IPWSO Board member, is heading up this new project.  She has worked over the past 21 years as a clinician with adults and adolescents with PWS.  She has seen families continually work hard to provide and access the best care possible for their adult children with PWS, and recognises the difficulty that this can pose.  She says:

"As children develop into adolescents and adults, families continue to struggle to find the most appropriate setting for them.  It is these areas that need to be addressed as soon as possible for the adult child with PWS, to ensure that every environment they spent time in is as appropriate to the needs of someone with PWS as possible.

"Finding a school that will step up to the challenges demanded by someone with PWS is a difficult task.  The school years can be most rewarding and above all, secure for a child with PWS if the service providers fully understand the syndrome and the specific needs it brings.  On leaving school, the adult child with PWS faces a whole new lifestyle, one that inevitably offers many opportunities for great independence and high hopes.  However, people with PWS can never survive well with independence, especially in travel or situations that provide even the hint of access to food.

"All environments into which adults with PWS venture need to be appropriately managed to prevent the development of overweight and difficult behaviour.  Where an adult child with PWS remains living at home with the family, it will always be up to the family members and any other people supporting the adult with PWS to make provisions for the best possible environment."

FamCare's aim is to support families who need help, inspiration, new ideas, and just plain common-sense answers to the every-day problems that arise in caring for and managing the situations that arise when living with an adult with PWS at home. 

Watch this space... there will be more!