My four year old was just finishing his second year of preschool. I can honestly say he loved school more than most. He is gregarious and social and feeds off the energy around him. School is like one long and awesome play date for him. As this last year went on, however, a line of hard questioning began. Particularly why he couldn’t write his name like all the other kids.
Now, this was not an easy question to answer for my toddler. If you asked him to spell his name, he could immediately and clearly do it. If you asked him to show you all the letters in his name, he’d pick them out of the alphabet with ease. But, he could not write his name. The truth was, he could not hold a pencil. We had an occupational therapist and the school working with him, but to no avail. Every time the little guy would pick up the pencil and try to write, his hands would spasm and lock. How do I tell a four year old that he is having a dystonic episode and that writing is a trigger? It would mean nothing to him. So I asked questions to try and bide myself time to figure out what to say. As I listened to him talk it was clear to see that he had lost a little piece of his innocence. He was starting to figure out he wasn’t normal. And it killed me.
I explained to him that everyone’s boddies are different and unique. Some were naturally better at some things than others. Holding a pen and writing were something he was going to need extra patience to achieve. “I have to try harder?” He asked. “Not harder.” I tried to explain, “but longer. You are already trying really hard, and we are so proud of you for that. But, sometimes we have to try really hard for a while before we accomplish what we want.” He was looking at me blankly and I was not sure if what I had just said went way over his head, or if he was simply absorbing. “So, I have to be patient?” He asked. “Exactly!” I said “it’s just like when you are running and you keep falling down… What do you do?” He looked at me with his little brown eyes and said ” I keep getting up. I try again”. The fact that this was even a real life practical example for him hurt my heart. He was only four, and yet he knew first hand all about falling down, both metaphorically and literally. “You got it kiddo.” I agreed. “You keep at it, and you will do it. It just may take some time”. I was feeling good that he seemed to understand, but his reaction deflated me. He slumped his shoulders forward and let his arms hang lose and floppy. He bowed his head in an attempt to hide the sadness on his face and said “ooooookaaaay, fine” and he walked away.
Weeks went on and time passed and he never mentioned the writing again. I was afraid to ask him about it. I was afraid to keep reminding him of something he wanted so bad, but that he couldn’t do, and had no control over. So the issue fell silent.
On a spring day in May, with only a few weeks left in school. I entered his classroom to pick him up. I was handed a little piece of paper by his teacher. It was a little bigger than a third of a regular sheet, and it was wrinkled and folded. “What’s this?” I asked her. She smiled at me, a very genuine smile and quietly said “just open it”. As I unfolded the piece of paper I froze. As I stared at it I could feel the lump growing in the back of my throat. “Did you help him?” I felt compelled to ask. She shook her head “nope. All by himself. Took him all morning. He’s a persistent one”. He saw me and came running over. “Mom! Mom! Did you see!?” I stood in the middle of his class room staring at the most beautiful four letters anyone has ever seen. “You wrote your name!” I exclaimed. He just nodded and smiled. I grabbed him and hugged him and told him how proud of him I was. Once we got in the car we immediately called dad to tell him the good news.
Dystonia can put up major road blocks. But, road blocks force us to overcome adversity and truly succeed. That day my little boy learned what genuine triumph feels like. He learned what it means to persist and succeed, and it felt good. It made me proud. Sitting in the car staring at this little piece of paper and listening to him tell his dad all about his big news, I couldn’t help but wonder if four little letters have ever meant so much.