It’s not something I am proud of.
It’s not something I ever wanted to model in front of my children.
But I do lie.
I have lied. I will continue to, I’m sure of it.
Because, it is part of surviving this life with Ryan and Prader-Willi syndrome. I have even encouraged Luke and Kate to lie, and be sneaky. It’s all to protect Ryan from his anxiety–getting triggered and having tantrums–and frankly, to protect US from being subjected to it.
Here is an easy scenario to explain what happens often:
Ryan is on a food schedule and his meal portions and diet are very controlled. Breakfast-snack-lunch-snack-dinner-sip-of-milk-before-bed. That’s it. Usually. If Luke or Kate want a sweet treat in the middle of the day or evening, I sneak it to them in the kitchen, encourage them to hide and to NOT tell Ryan. Lie by omission. Then if Ry walks in and asks where they are, I am evasive or I lie.
We book a family trip somewhere. Anywhere. With any plans or future events we cannot talk ahead about it. Because although it sounds counterintuitive, its better to spring it on Ryan. Although he would be very excited about said event or trip, he would perseverate, focus on it, and ask a trillion questions. Any change, whether a “good” change, like a vacation, or a “bad” change as in plans cancelled, his anxiety shoots way up. We really try to tell him about plans, parties, etc., on a need-to-know basis. This is very hard to do with a bustling family life. Kate and Luke may know ahead but they are encouraged and warned to NOT TALK about it. And if I lie and say “I don’t know” to Ryan, they know to go along with me or Chris. I do not post a “Family Calendar” for this very reason. I may only print out the current month for Ryan from time to time, with as minimal details and information as possible.
We tell Ryan that one of our extraordinary sitters/behavior therapists “asked” to take him on a special date. However, it’s all premeditated so that Chris and I can take Luke and Kate on a special “Ryan-free” outing. Ryan is thrilled about his date and the rest of us are excited to go OUT to a restaurant and ocean kayaking. 99% of the time these days we do not go out to restaurants with Ryan. He gets anxious as he knows his access to food, more food than usual, is high. He becomes like a demanding two-year-old about what he wants to order and won’t negotiate for smaller portions or milk or water only as drink choices. (We used to be able to do this dining out. But his food drive has really kicked in.)
Planning these covert operations, AKA dates with ONLY Kate and Luke, are survival tactics. Chris and I remind them on the way home from our “Ryan-free” day to not tell him what we did. If he asks, we will come up with something. And NO, we will not tell him we went OUT TO EAT, and WHAT WE ATE. Which of course is most important to a child with PWS.
It’s respite for us, which we all desperately need. Every family that has a special story in ANY WHICH WAY, needs to find respite and breaks.
So we lie.
And then follow-up conversations about honesty and integrity are a must. An explanation of WHY I lie or why we lie to Ryan must take place from time to time. I always acknowledge the completely mixed-up messages I am giving to them about honesty. I go through the logical steps of what would happen if Ryan knew the truth about x,y, or z and they know TOO WELL how he is triggered and the ensuing firestorms and tantrums. If we can escape one or two a week, then we are grateful and relieved.
It is survival mode for the Patay Family. We are in this together. Lots of whispers between Chris and I in our bedroom surrounding things we must keep from Ryan. Our strategies. The forbidden topics. Whispers with Kate and Luke, in the lying loop with us.
Do I feel guilty about lying? Sometimes. Mostly no. Do I feel badly as a mother that I condone and allow “justifiable dishonesty?” YES. But we HAVE to. Its a way we sidestep and tiptoe and walk on eggs in this life-journey with Prader-Willi syndrome. We protect Ryan from his exhaustive questioning, crying, tantruming, perseverating, i.e., making us a little crazy and spent. I justify it if it saves some of the mental and emotional energy expended daily, by all of us, as we care for and love Ryan.