Here's our story… From Halloween to Easter is a mine field with one food event after another. Both girls also have their birthdays during this time so that adds to the number of events. When Erin was little, I became so anxious as this time of the year came on that I couldn't enjoy it as much as I should have. My anger at the diagnosis and my sense of being alone and misunderstood among friends and family made these "holidays" a time to dread. My fear of the future and what could happen to Erin if I didn't handle things "right" made me resent the others who didn't seem to do anything but enjoy these special times. How could they be so oblivious to my pain? Why weren't they as fried as I was about the patterns that could be set when Erin was allowed to have extra or forbidden types of food? Why didn't they bristle when we were blindsided by food opportunities?
All these thoughts brought nothing but anger for me and didn't cause me to see the bigger picture for Erin. Eventually, it was Erin who taught me how to handle these holidays. When she talked about the upcoming holidays, she didn't talk about food. She was SO excited about family and friends coming over and all of us being together. The very people I wanted to avoid to keep her "safe," were the people she couldn't wait to see. It was their company she craved much more than the food. Every child needs to see herself or himself as a part of a larger whole, the family and friends that make up our history and our lives. Now, we have learned to build up excitement about the upcoming holidays, intentionally blowing off any mention of food, and focusing on the things that really are important…the people. ("Yeah, we'll have dressed eggs, but we can have them anytime. Aunt Debbie is coming!!! Yee-haa!!!),
Discomfort comes when there is imbalance. What I realized that what was really out of whack were my expectations. PWS is bizarre and there is NO WAY to know that without living it as intensely as those of us with children with PWS do. I would not have understood it before living it. I would have had plenty of opinions about what PWS parents should do, how they should handle things, how their requests from family and friends were unreasonable, plenty of opinions. I would have been sure I was right because I was working only from my own experience, and that did NOT include life with PWS. Had I never lived with PWS, never experienced being on red alert year after year, never had to fear so many things so intensely, never had to question myself unrelentingly, I would not have understood. I would not have been any better than they are.
Where I have come after almost 10 years is that the holidays will always be with us and are fun and should be enjoyed. Thinking of friends and family who are not doing things as we need them done, I have to choose to forgive them before things happen, because they will happen. Go into each relationship knowing that they will not understand. Be excited by those few people who do "get it", because they are the exception and not the rule. Find a way to say publicly how much that person's response to your situation helps you and praise them for their understanding. This praise may help others see what kinds of things help you without you having to come out and say it (again and again).
Let those who don't "get it" do other things to help you. Let your clueless friends pick up your other children when you have to stay at therapy late. Let them sell the Girl Scout cookies when you know it is too much for you to handle. Let them help you by organizing fundraisers for research. (I couldn't help myself!) In other words, when they can't do what you'd like for them to do, let them do what they can. Then, be truly appreciative of their efforts remembering what they have done, looking to better days ahead when they may be able to help you even more.
The other thing to remember is that, despite what they do or don't understand right now, family members are often our best bet, especially in a crisis. Even though it is time-consuming and frustrating, I keep reminding myself that I may well need these very people at some point and even though I'd like to dump them at the moment, that may not best serve me, and especially Erin, in the future. Keep on talking to them, even if they don't seem to listen. In time, it may all be much clearer to them and one/some of them could be your best support. We only learned to understand PWS suddenly because we had to. Their learning curve may well be much longer, but it could still happen. In the movie, "Nothing in Common," the dad, a tough old bird who is dying, is being cared for by a previously wayward son. Toward the end, at the most poignant moment in the story, the dad looks up at the son from his wheelchair and says, "I never thought it would be you." We may well have relatives like that. We could find ourselves in a crisis when family members are all we can count on. Leaving fewer bridges burned makes it an easier path back.
Now, about the food… When Erin was younger, we decided early on to just do the things during holidays that we could handle. Too much hustle bustle isn't that good for any of us and since Erin went to bed early, we kept out schedule reigned in. Tired children and holiday stress doesn't mix so it is important for the adults to be able to say "no" to invitations. As she grew older and we went out more, we had an agreement in place before we went out. First, Mommy and Daddy decide what we eat. Second, when our eating is over, it's over. Third, if this doesn't work, we leave. Usually, just the threat of that is enough to settle the matter. Only a couple of times have we had to go through with it and it wasn't any picnic for any of us, but it did make an impression.
When we have family meals, we all sit together at a big table, but the food is not in front of us so Erin doesn't have to sit there and look at it. My mother puts it all on the counter and we go through the line cafeteria style. Erin has her plate just like everybody else. What works best for her is to be able to have even a little of what everybody else does. Now, I do really mean a little. I have talked to her for a long time about foods that have more calories than others. So, when there is a higher calorie food, she gets a taste. So far, that has been enough. What would be harder for her to deal with is to tell her that she can't have ANY of it. As long as she knows what it tastes like, she doesn't usually complain. That's pretty true with all of us, isn't it? Those things that are most prohibited are the things that we want the most, right? So why not eliminate the obsession. It's worth a few calories and we make up for it later. All in all, she doesn't get many more calories than a regular meal. I spread out the food to cover her plate, adding all the veggies I can.
Another thing that helps us with food is the clear message that this is an exception. Today is ______ and we are going to have _____. We don't usually have this, and we will have to take it easy afterwards, but this is what we are going to do today. We go even farther and say that the next time ______ happens, we may or may not have this ______. Today is all we know about and it is only today.
Finally, it helps us that Erin eats very slowly. Her teachers have asked me about getting her to speed up and there's absolutely no chance of me doing that. Erin can have less on her plate than anyone and still have food left when everyone else has finished. I suspect that she's figured out that eating it slowly makes it last longer. That's a strategy that is good for her digestion as well as limiting her calories.
When we eat out, we usually just share food from our plates with her. Restaurants give such big portions that it's easy to get plenty of food for her in this way. Also, it's usually better food than they offer on the kids menu. Sad, isn't it?
It's always been very important for us to remember that PWS is at the root of many of Erin's reactions to things and she can no more control those things than you can a sneeze. It's not being "naughty" when a child with asthma starts wheezing any more than it is "naughty" when a child with PWS obsesses about food. Respecting that and her, when we are in public, we do everything we can to make the outing enjoyable. We don't give Erin any idea that she can get by with things in public that she couldn't it private, but we do everything we can to teach and discipline her in private, the same as we do Kristen. If we get any hint that she is using this accommodation to break the rules on purpose, we sit down with her privately and talk it out. We make it clear that if this happens again, that's the end of that particular treat/outing until she can handle the rules. There are times when she has told me ahead that she cannot go to _____ because it's just too much for her to handle. She'd rather not go than have trouble. Knowing that she understands herself enough at this age to say that is very encouraging to me.
The keys to all of this are flexibility, sensitivity, and an extremely close relationship with the child involved. Through the years, we have worked through some pretty thorny times. To me, the hardest years are from about 3-6 when you can no longer count on physically picking them up and moving them out of a difficult situation, but at the same time, you can't count on them being able to reason with you enough to accomplish your goals. During this time, I found it important to be able to concentrate on Erin more than any other time. This is the time when I learned to say no to anything that I did not have to agree to. Church, school, community groups always ask for help and always need help, but there are other people who can do those things. There was no one else who could focus on Erin and give her the attention she needed. When she was in a difficult situation, I tried to focus on her environment. What is triggering this behavior? What can I do to get beyond this so we can deal with it in a healthy way? What is she trying to tell me about this situation that she doesn't have the words for? If we see all behavior as ways to communicate, then the responsibility lies with me to listen and listen well.
Again, these are my thoughts about my family and, specifically, my daughter. It's been a long process, one that changes as her needs and skills change. It's not the only way that works, but it has worked for us. Erin is delightful, a child with incredible sensitivity, a quirky dry sense of humor, determined, opinionated, resilient, a wonderful child who faces a world full of infinite possibilities. The challenges that PWS has brought have been daunting and can still threaten her future, but she is up for the challenge. God help the person who stands in her way! 🙂