Identity

As a parent of a child with significant medical needs I considered it my job to determine when H was old enough to know about his rare syndrome. I expertly dodged strangers who would approach me at Target or the grocery store and ask what was wrong with H. When I gave them a dirty look they would add, “I’m a para and I work with kids with special needs” as though that were enough to give them the right to inquire about my son’s medical information. I usually told them the same thing a second grader said when his Mom asked him what was wrong with H. “What do you mean? There’s nothing wrong with H.” I didn’t want H to be defined by a diagnosis that represented his tough medical journey. I thought the time to tell him would come to me through wisdom but H decided in middle school it was time. 

 

As H walked through the door after school he announced “Mom, I have autism”.

“No, H you don’t.”

“Yes, I do. I have autism.”

“No, you don’t. Why do you think you have autism?”

“Yes, I do, B told me”

B is H’s best friend, and has Down syndrome.

“H, I am well aware of your medical history and you have not been diagnosed with autism.”

“Are you calling B a liar?”

“No, I think she truly believes that is what you have, but you don’t”

“FINE!" And as he marched off to his room he hollered back. "Then I have Down syndrome!”

 

H now knows. He talks about Lowe syndrome like it is just another part of who he is. And in all that makes up the fabulous human being that is H, I guess it is.