Lucas

​MMA Cbl C

Lucas is a three year old boy. He has amazing blue eyes that twinkle when he is being mischievous (they twinkle frequently) and shaggy blonde hair! He likes to play trains, be read to, watch Curious George, wrestle with his brother, and boss his sister. Lucas rides his balance bike at break neck speed and has mastered all playground equipment. He has a great sense of humor. He can be completely stubborn and incredibly sweet (sometimes at the same time). Sometimes he is shy; sometimes he is a wild child. He also has Cobalamin c disorder (Cbl-C is a rare genetic disorder that can be fatal without treatment). Fortunately he is responding beautifully to treatment but he is slowly losing his fine vision and he cannot talk yet he communicates beautifully. Cbl-C is part of who he is but it does not define him.

Recently his special day class went on a field trip to the pumpkin patch. Lucas was super excited to see all the pumpkins so we were up ahead of all the other kids. A guide was telling a few school employees about photo opportunities. A para (aka teacher’s aide) said, “You know they are….” My mommy senses tingled as I knew nothing good could come next. In that short second that she tried to find the right word, I willed her to say kids, preschoolers, wiggly (anything that described all young kids). Of course she didn’t. She said nothing. Instead, she finished “You know they are” with a flick of the wrist. To me this said that they are not quite right, a bit off, a tad iffy. In one gesture, she not only marginalized my child, she did it to every child there!

This gesture left me speechless which is not something I am accustomed to. Some would say I am a bit too outspoken but this time words failed me. I am not sure if it was anger or sadness that caused the inability to speak. Tears welled in my eyes. I was stunned by how profoundly this affected me. If you asked me how I was doing being a special needs mom, without hesitation, I would say “Great” and continue on about how fortunate we are to have such an amazing kid. But this wasn’t about me. This was about a thoughtless, simple gesture. I know the person who said it did not mean for it to be hurtful. The fact that it was unintentional did not make it any less painful. The fact that she worked with this group of children made it even worse. She should have known better.

​I regret not saying something to the person at the time. She does not work with Lucas so I probably will not see her again. I hope by sharing this story people will stop and think before they speak. Most of all, I hope people will realize that a disability is part of what makes a child who they are. The child is not the disability!

by: Kelly San Ramon, CA kellyjellin@gmail.com

From the Spring 2013 OAA Newsletter