I'm sure many of you can relate to this, the moment your child does something that you've read about in the literature of their disorder, perhaps something you hoped they would never do or experience. Then one day...it happens, seemingly from nowhere, and your first thought is, "Here we go."
I was called to Freya's school yesterday because she could not stop picking at a healing wound on her hand. She even expressed those words herself, "I can't stop". They went through a few bandaids, tried distraction, gave her a bag of ice and then called me for suggestions. As soon as the school secretary started describing what was happening, my stomach turned and I thought, "Here we go".
Of course I did not have suggestions I could explain over the phone. Years of articles, doctor visits, lists of PWS symptoms and FB posts from many other parents of kids with PWS ran through my mind. Causes, signs and strategies all jumbled around in my thoughts competing for each other so all I said was, "I'll be there in 10 minutes."
Freya has not shown any extreme signs of anxiety so far. Sometimes she perseverates, sometimes she picks at bug bites, sometimes she sits by herself methodically going through a stack of books one page at a time. But none of these have ever been an issue. As soon as I heard that she literally could not stop picking at her hand, I knew it for the anxiety I have feared.
I jumped in my car and drove to the school. I called my husband along the way to tell him what was happening. Guess what was the first thing he said..."Here we go".
They (whoever they are - specialists, doctors, other parents) say that we should not look ahead too far when your child has a diagnosis of PWS. It is one of the hardest disorders to navigate. (I say this because I have read that parents of kids with PWS have some of the, if not the, highest divorce rate of couples with special needs children, caretakers and family members of people with PWS have incredibly high stress levels and some - especially siblings - even suffer from PTSD). So the message is to take one phase at a time without getting too bogged down with what MAY happen in the future.
I say MAY for a few reasons - one, it is a spectrum disorder, meaning there are a variety of ways PWS manifests and to a variety of severities. The other is the rate they are researching and learning about this disorder; it is exciting and inspiring. I have said this before and I will repeat it every day of Freya's life as needed - one of the first things that Dr. Miller told us at our initial appointment years ago was, "there is so much hope."
I believe it is good to look into the future so that we are prepared for these moments. No, we should not let the 'horror' stories destroy our hope, or are ability to properly care for our child and the phase they are in. But we should allow those stories to help us be better prepared for the possibilities we face with our child's future.
I know what Freya is potentially capable of because of her disorder. But I also know what she is capable of because she is human; she is bright, motivated, friendly, caring and interested in the world around her. If anxiety is something that we have to start dealing with, then we will do it with understanding, knowledge and, hopefully, grace.
This was not the first 'here we go' moment, and it won't be the last. But with every one, we have come into it armed with information and awareness, even if it breaks our hearts a bit.
When I arrived at the school, slightly terrified as to what I would find, Freya was in the office with a bag of ice and a smile on her face waiting to go work with the resource teacher, whom she loves dearly. I knew she was in good hands, and had apparently moved on from the moment. I still gave her some Rescue Remedy, my go-to anxiety treatment (for those who don't know, Rescue Remedy is a Bach Flower remedy - totally safe and effective) and even left a bottle in the office for these moments.
The transition into first grade can be hard for some kids, especially kids like Freya. I thought she was doing fairly well after that first week. Perhaps she is and yesterday was a rare event. Perhaps not and I need to be more aware of how it is affecting her and her anxiety. Either way it is yet another reminder that this journey of PWS is not a straight, easy path.
But that doesn't mean we can't enjoy the scenery along the way.