I typically end my parent presentations with a piece called The Five Year Trophy, a tale from years ago which talks about the obstacles my girl has finally slayed after years battling against the “fight or flight” responses of her SPD. For awhile it was a final piece, as I fully believed, falsely once again, that our days facing SPD were behind us. I would stand up at a podium, staring into the eyes of other sensory parents, leading them to believe I had led this charge towards SPD and slayed it like the ending of some heroic adventure movie.
Then, about a year ago, my daughter started to regress. She would come down from bed at night complaining that her belly hurt because she “couldn’t shut her mind off.” She began to complain about the noise in her classroom during indoor recess. Clothes began to feel tight and uncomfortable. She had a meltdown at Disneyworld even though, one year prior, she conquered Disney like a champ. It began to unravel quickly, impacting her in every aspect of her life until she got up the strength to approach me and say, “I need help. Take me to see someone.” So, I did.
I have sat here for a year thinking about what has happened. Thinking about that Five Year Trophy piece. Thinking about what I thought it symbolized because I realize that what I thought was all wrong. That piece wasn’t the end to our story but merely an ending to a chapter in our lives…our lives as a family living with someone with SPD. It concluded a time in our lives where we were severely limited in what we could do and in who understood us. It marked major milestones for my girl. And I couldn’t be prouder about all of it. What I am not proud of is foolishly thinking, and possibly leading any of you to believe, that our story was over. That SPD is something that comes to an end, like the final scenes of those movies where the hero slays the evil monster. Because life isn’t like some heroic movie. It’s more like a game of Whack-A-Mole. When we are first faced with an obstacle we get overwhelmed that it keeps popping up around us before we get a chance to make sense of what is going on. Before you know it, that game is over. So, do we give up? No. We put another coin in and we try again, maybe even hitting a mole or two. This gives us confidence and with each game that ends we get quicker to start a new one. What we realize is that, even though months or years can go by in between games, the game itself is never truly over. Each time you play, things pop up and as good as you get hitting them down, another quickly pops up behind it. You never hit every one and keep them down forever. But, with each game, you increase your score. And your confidence. And no matter how much time passes, you play over and over again hoping you will be better than the last time.
In the year that has passed since my girl began to show distress, things have been on an upswing. She began therapy and aerial yoga with an occupational therapist. She reads herself to sleep to help her mind relax at night. She has made some major accomplishments..most recently being elected to Student Council, giving a speech in front of a crowd of people in a noisy auditorium. She earned spots on a competitive dance team and performed at the World Dance Championship. This holiday season, she will perform with an elite ballet company in The Nutcracker Ballet. But, with all these things, I won’t write some heroic piece marking the “end” of SPD in our lives because, with all these accomplishments, comes other aversive reactions to her environment that typically I would ignore…changes in the clothes she can tolerate, screaming while brushing her hair, hating the feel of a bathing suit or the way the water feels on her face when she has to take a shower. So, I will keep playing this game and, instead of hoping for an end, just hope for the best possible outcome instead…for I know the best is yet to come. And although we may not ever get to the slaying of the dragon, my girl is and will always be my hero. She has shown me, in her almost ten years of life, that it’s not whether you win or lose, but how you play the game. Although having a kid like her sure feels like winning to me.