Did you know that mothers of children with Prader-Willi Syndrome have up to twice as much stress when compared with parents of other developmentally disabled children? In addition, parents with disabled children already report a 10% higher number of stressors then the average parent. Not to mention a recent American Psychological Association poll that found that one-third (32%) of parents in general report that their stress levels are extreme!
This is from the Foundation for Prader Willi Research - Canada.
I heard that statistic very early on after Olivia was diagnosed with PWS. At the time, I found it very hard to believe that a PWS parent could be more stressed than any other parent of a disabled child. It smacked of hubris to me and I thought that either the person quoting it misheard the original information, left out a word, or just "felt" things were worse.
I don't believe that anymore. Although it feels kind of wrong for me to admit this - I've never been a big fan of the whole game of "my stress is worse than your stress" or "my problem is worse than your problem" or worst of all, "my husband's deployment is worse on me than your husband's deployment is on you"; I can understand a little bit of why PWS feels a little worse. While it is not true in all cases, there are some things unique to PWS that are not encountered in any other disability that I am currently aware of.
It's the food. Always the food.
If you think we're a food obsessed culture now, wait until you have a food related disorder and then you will realize you can barely go even a few minutes without thinking, hearing, seeing, smelling food in some way. Everyone is talking about food - using food for motivation or discipline; as metaphor for hospitality, love or caring; as a tool for health or fitness; for familial or community bonding; for tradition or cultural reference; for hobby and relaxation; for business deals and entertainment; as a story-telling tool in parables and books... the list goes on.
In our family, even before Olivia, we really limited the amount of sweets and snacks we have in the house. I don't really buy junk food; and by this I mean cookies, chips, candy, snack crackers, cake or sweet bread mixes, etc. It's not that we never ate those things, but they were eaten sparingly and rarely, and mostly at other people's houses. About two years ago I started collecting all the candy that Amelia was being given at various functions and put it in a clear plastic shoebox. Every time she received treats, she could eat one or two and the rest went into the shoebox for special occasions. I've periodically dumped out a bunch of it in the trash and yet the box has never gone empty.
Even though Olivia doesn't have the extreme hunger YET, I find myself constantly confronted with situations now that I find stressful because I am so much more aware of food that I never noticed before. Today at church really brought this home to me.
We go to church and there are candy dishes everywhere, filled with peppermints. I can't get into church without fear that my 4 year old will have a screaming fit because she sees candy and wants a piece of it. I want to tell her no, but I created a bad habit/expectation by letting her have one piece of candy when she comes in the door so I can speak in peace to the people around me. If it was never there at all, I would have NO problem with her whatsoever, I could still speak in peace. It's the temptation that causes a problem for my four year old.
Then once in church, there are donuts at the back. They are such a treat because we never buy them, and I allow her to have one donut before we sing for praise and worship time. She constantly asks if she can have one more but always accepts the answer is no.
I take her to her Sunday School class, and the first class that is her age rewards the kids with a small amount of goldfish. I don't like it, but at least it's not sugar.
I started going earlier, and last Sunday was shocked when I went to pick her up from her new class when I found out she had a paper bag full of candy and other goodies she "earned" by answering questions. A sack. Maybe it was 6 things, but when you need a sack to carry the sugar, I think it's too much. The teacher told me it was a special class and that wasn't normal. I didn't know ahead of time that is how things worked and it never occurred to me to ask. I forgot between last sunday and this sunday and she went again to the early class. When it was over, she came running out with more candy for answering questions correctly. Only two pieces this time, but .... then the inevitable questions. Can I have it? Now? If not now, then when?
It's so frustrating because we're only trying to keep her a bit healthier and away from the national average of 122 pounds of sugar eaten yearly per person.
"As little as 100 years ago, it is estimated that Americans ate around one pound of sugar a year." (Dr. Scott Olsen) Teens eat even more sugar than adults, and we want to establish healthy habits for her very early on.
It will be easier to stick to what is healthy than to retrain her as an adult to not eat unhealthy foods... think of your own diets and food downfalls.
So all that is only the background for what comes next.
It's everywhere. EVERY. WHERE. So pretend that you have a crack cocaine addict that is attached to you with handcuffs. You can not go anywhere without this addict by your side. It is your job to make sure that the cocaine addict behave him or herself at all times; use proper manners; use appropriate language and social skills; have appropriate hygiene; be pleasant and fun to be around.
Everywhere you go, someone offers you some cocaine. You don't have the same problems with it, so you just say no. It's left on the counter in front of you in case you change your mind. You open a book to read a story to your companion and there are pictures of cocaine everywhere, stories with long descriptions of how wonderful cocaine is as part of the storyline or even background plot. Listen to the radio and you will hear whole programs on cocaine.... you get the idea. All the while your companion is expected to not indulge, to control him or herself, to behave like a normal human being with no problems.
Only it doesn't happen.
How do you operate as a normal family around the dinner table, laughing and talking and preparing dinner together when you have to watch like a hawk what your PWS child is doing in the kitchen? It takes a joyful, everyday event and creates a tension and stress filled one. Even if you have a system in place, I would imagine how guilty I would feel knowing I won't be able to feed Olivia as much as she wants to eat. It has the potential to create eating disorders in other family members that would never have existed otherwise because of the ritual/cautions needed around food of all kinds and the tensions that result from that.
How do you go for family vacations with your extended family? How do you stay at houses that don't have food locked up? Will I ever be able to visit my brothers or my sisters or my parents at their house again without stress of where she is at every minute? How do I go grocery shopping when I have to take her with me?
Most of all, how do I balance my love of cooking with my oldest daughter (4 year old Amelia) and all that we will cook together in the future in shared companionship - creating an intimacy in that area that Olivia and I will never know together - without making Olivia feel left out and left behind?
Not only do you have to control their eating habits and calories, you have to control your own and that of your family. You can't indulge in an ice cream sunday for dessert for the whole family when your child can only have 700 calories total for the day. In order for your child not to feel left out or a burden or unfairly penalized, everyone eats the same thing; only you have a few more calories on your plate. The food becomes much healthier but you will leave behind a lot of old family favorites and traditions. You can't just swing into a restaurant or fast food place when you are running late because the caloric content is too much for your child.
In the end, I think the intense stress comes from a variable that shows up in so many unexpected places, in so many unexpected ways, and yet is essential for both physical and social life.
I don't think I explained this very well as I read over this but I'm tired and done for tonight. And I am so tired of seeing junk food and candy EVERYWHERE. And a whole other rant.. why do we reward kids with food anyway??? ... saved for another time.
***EDITED TO ADD: I've had so many comments, both public and private, on this asking to link to this page. You are welcome to link to it; thank you so much. Please let me know where you link; I love to read other's blogs. It helps to know it's not just me that feels this way.