Long Overdue - Dunky Update
It’s been too long since I’ve sat down to write about my boys and all the feelings that come with those cute, little, adorable, naughty and hilarious stinkers that suffer from this awful progressive muscular disease. It’s time, I can feel when it’s been too long. It’s almost like a tap on the shoulder that suggests I slow down and feel the feelings and live in the moment. Sometimes it’s easier to just keep going, full speed ahead, but easier is not always the most beneficial.
I’m living in this crazy, emotional state. One day I’m sobbing in my car or after I get the boys to bed, just to wake up with a smile and live another day like the prior didn’t happen. It’s bizarre. How can you be so sad one day, yet dismiss those feelings the next? It’s what happens because there is no other option. I’m overtaken with sadness but know my boys and my family need me to be positive and strong.
This week was hard. We are 7 weeks into school and Dunky will not talk. At all, like zero words. I sat through 90 minutes of an IEP meeting for Dunky (4) and listened to all the people around the table talk about their concerns regarding his perceived “inability” to speak. They called it (not diagnosed) “selective mutism.” My Dunky, the crazy, silly, naughty, chatty, amazing little boy that flourishes amongst a comfortable environment. But not school, no way, no how. Is it his way of showing power? Or is he overtaken with anxiety? We think it’s the latter but will embark upon therapy to try to figure that out.
I’m holding back tears while we start to create solutions for helping him “speak” using visuals and hand gestures. For now, it’s the right thing to do to ensure that he can advocate for himself. We talked about the concerns that being nonverbal while having Duchenne creates. Imagine his muscles are tired or cramped and he can’t take the stairs or struggles to get off the floor, but he is too scared to talk so he forces himself to take the stairs instead of the elevator and fights to stand up on his own, with no help. Or imagine he has to go potty but is too scared to talk he doesn’t tell anyone and then spends the day holding his pee with slightly wet underpants.
We have come up with some strategies to try to help him and are seeking clinical care for his anxiety, but the truth is my heart breaks for my little Dunky hearing about his struggles. However, today, just two days after this IEP meeting, I receive the picture below.
What appears to be just a cute snapshot of our Dunky brought me instantly to tears, because it has so much meaning. Part of our discussion was that Dunky has yet to fully participate in gym (45 minutes of the 3 hours he is there) and instead chooses to sit on the bench where it’s comfortable because he doesn’t have to talk. But one of our strategies is to have Caleb, Dunky and Daddy show up 10 minutes early and play together to get him engaged and playing and hope that it continues. They did that yesterday and today, and this here is the result. This little stinker was riding a Strider bike and NOT sitting on the bench by himself! There were still no words exchanged, but a small sign of comfort.
So tonight, we are celebrating the small wins.
Stay tuned for an update on our other crazy, silly naughty, chatty and amazing little boy, Caleb. This is all my heart can handle for the day.