WARNING: don’t read this if you are not interested in truth.
It isn’t pretty, but it’s real.
Remember Jack Nicholson in “A Few Good Men”? : You want the truth? You can’t handle the truth!
Much of our truth is kept inside the walls of our home. This is not due to shame. I think maybe the biggest reason is because it is too heart-wrenching to relive through the telling. An episode is an exhausting event, once it is over I do best to walk away and leave it behind. Perhaps another reason I have not spilled about this is because I don’t give you all enough credit Unlike Jack Nicholson’s character I should know that because you love us…. you CAN handle the truth.
People with Prader-Willi Syndrome have some behavioral challenges that are compounded by the hunger, but also have their own impact on one’s ability to function well during a day. Examples of non-food related behaviors can be found in brochures, articles, and websites. Here is a compacted list of some behaviors of PWS you might not know about:
- difficulty with change in routine- insistence on routines
- temper tantrums
- obsessive and compulsive behaviors
- mood fluctuations- mood lability
- ritualistic behaviors such as hoarding, ordering and arranging objects
- repetitive speech
At our house I simply consider it a “meltdown” or “issue” to be de-escalated and lived through. Almost every morning, the first thing I wake up to is one of these “issues”. I hear the grumbling, shouting, crying, and stomping; my first thought is always, “ugghhhh, can’t I just sleep a little longer?” My second thought is, “Poor Katie-Did… what has put her over the edge this time?” It is often because she can’t find something immediately, so she takes a gigantic- off a cliff type of leap to….”it is gone, it will never be seen again!!” When in actuality the item is 4 inches away from where she expected it to be and might have something in front of it or on top of it. Not quite a catastrophe worthy of the tears and angst exhibited. Unfortunately, the calming down phase does not proceed with the same rapidity as the panic/meltdown phase. A calm, soothing voice (as opposed to me grousing, “for Pete’s sake, what on earth is wrong now? Have you looked where you think it should be?”), some slow, deep breaths, and a few minutes alone can turn her around….oh, and turn me around, too! The disruption caused by these meltdowns has become expected- which is to say that it no longer sends me to my room to lean sobbing against the closed door. I now can continue to the bathroom to pee and brush my teeth.
There are still times that completely break my heart because the cause of the meltdown is something that has truly touched her and is not a seemingly trivial reason for panic. One morning her crying showed no sign of irrationality, it was pure sorrow I witnessed and tried to console. She was unable to speak, but held up broken chunks of a coffee cup. The cup had photographs of her dear nieces and nephew on it and had been a treasured gift from them. She clutched those shards to her chest and gulped for air as I wrapped my arms around her and my tears fell on her blonde curls.
There are things in her life that interest her that are not food.
She loves from a deep heart.
That is pretty. That is real.