Acceptance

"I like you just the way you are."  Fred Rogers, Mister Rogers' Neighborhood

When people first meet my son, Cliff, they make a lot of assumptions about him. They expect that he's a "typical" person with Down syndrome. They assume he can talk and have a conversation; they ask him if he likes the Patriots and the Red Sox (or Yankees depending on the state we are in) as if it's the most natural thing in the world to know who they are. (He doesn't) They attempt to connect with him and I think that's so kind. Instead, a lot of the time I end up answering their questions for him, explaining a lot, smiling my head off, excusing his inability to respond to certain questions (and re-posing strangers' questions for him in a way he can understand), and trying to get through an initial meeting without making the other person feel awkward.

But my son is not what you might call typical of people with Down syndrome. He has very limited speech for one thing. He is unable to read or write. He's dependent on other people for most of his wants and needs. He's not the guy who can tell a joke (though he can be a total goofball), independently perform all his tasks at his job, or play a game without someone else doing most of the work. He's not the guy walking around town by himself or getting on a bus alone. That's just how he rolls. I, however, think he's perfect. Naturally.

I can recall the countless meetings I've had over the years while Cliff was a student. All I'd hear was "Cliff is unable to... Cliff can't...Cliff won't...Cliff doesn't know how..." I'd sit there listening to what my son did not have the ability to do, as if I didn't already know. When these meetings were over, I'd feel wrung out like a dishrag, exhausted, depressed, angry. A friend gave me some advice. She said, "Don't let a meeting go by where you don't insist that the teachers, the therapists, or the job coach tells you something positive. What CAN Cliff do? Focus on his strengths, not his weaknesses, and build on those." I never forgot that advice, and from then on, I asked them specifically to tell me something Cliff was able to do, and I think it went a long way towards changing their attitudes about him and the way they chose to teach him.

In the spirit of thinking positively, I will tell you that Cliff can make people smile. He can make you feel like a million bucks with one of his hugs. He has created a family dynamic which focuses on love and understanding and compassion. He can teach you things about yourself that you never knew. He can surprise you with his joyful belly laugh. He can change how you think about people with developmental disabilities. When he is singing at the top of his lungs it will make you laugh, or annoy the hell out of you if you're trying to do homework, watch TV, listen to music, have a conversation. He wants you to be happy. As limited as his speech is, he can sing the words to all the songs I've taught him since he was a little boy. If he gets mad at you, he doesn't hold a grudge for very long. He can say "Fuck" at the absolute most appropriate times, something I cannot say about my husband, who uses the word too often for my taste. (A blog post for another day perhaps?)
The thing about Cliff is that you can't know who he is with one accidental meeting at Stop 'n Shop. You've got to give it some time. As I move through my days there will always be someone I run into around town, at the store or the post office or the bank. And more often than not, Cliff will be with me. He is my almost constant companion. On those days, I hope you know that behind my words of explanation and introduction, of excusing and re-posing, lies a sincere wish for you to give my son a chance, to see who he is as a person, not merely his diagnosis. I hope you know that even if he doesn't answer right away, or at all, he appreciates your humanity. He doesn't know the meaning of the word, but he most certainly feels it. And so do I.