Sometimes, I wish that it hadn't taken having a child with disabilities for me to understand that you can be disabled and live a good, full, happy life.
Sometimes, I wish I'd understood before I had Max that children and adults with disability do not deserve pity; what they need is parity.
Sometimes, I wish I had been able to see the abilities.
For too many years, I didn't get it. That, I regret. And I likely never would have, if it weren't for Max. For that, I'm grateful.
I was pondering this as Dave and I sat in the audience of a coffee house for people of all abilities, with students from three different schools performing. Max had been enthusiastically practicing for weeks.
One boy did stand-up comedy and brought the house down. A guy sang "Hotel California" and "My Sweet Lord," accompanied on guitar by his music therapist. Another guy sang Fight Song as he played guitar. A girl did a beautiful "Ave Maria" on the violin. A girl and a boy from Max's class sang "What a Wonderful World."
It was a really entertaining evening. Everyone did a great job, period—not a great job "despite" their disability. Over the years, I have heard that word "despite" far too often. It's derogatory. Yet another thing Max has taught me is to see and appreciate the can-dos, not the can'ts.
Max sang "Put a Little Love in Your Heart," complete with hand motions. I don't think he could have looked any more joyful doing it. I don't think I could have smiled any bigger as I watched him, or been any more proud.
YAY, way to go, Max! He did a great job! I can't believe how grown up he looks - where does the time go?
ReplyDeleteBut now you know and you are a fantastic advocate not only for Max but the disability community. We can't obsess over our past errors, it just is not healthy. But Max did a wonderful job performing! He has come so far, I remember when he wouldn't even participate in school concerts.
ReplyDeleteLove seeing the pure joy on Max's face. You are doing an amazing job as a mom and as an advocate for all those with disabilities. -Lauren
ReplyDeleteThank you for posting! I had a similar experience this past weekend at the Special Olympics New Jersey state summer games. It was our first time attending and my son's first time competing in statewide competition. My son's gymnastics team has athletes of many different abilities, whom we see at practice each week, but SONJ gave me the opportunity to spend very concentrated time with a large variety of people. It really struck me how much more alike we are than different.
ReplyDeleteI am in the same boat as you. There is a quote that says something about when you know better then do better.
ReplyDeleteI also think about this when parents (even me at times) get upset (and vent) about others not understanding or getting it. I often feel that way about my family. But I have to remind myself that to understand it like I do then they would have to be living it also.
P.S. I could use a little Ben Zen in my life. Thanks for sharing him too!
What did they sing for? I am obsessed with Fight Song, but vocaloid can beat Fight Song any day.
ReplyDeleteAnna, this was basically an open mic night, sponsored by a museum thanks to a grant they received.
DeleteWhat they need is ... plenty. And what we give is ... plenty.
ReplyDeleteParity is a fine and required thing.
@Faye: that was really awesome.
@Kathryn: I remember too. This wasn't a *school* concert, wasn't it?
Anonymous: AGOSCI says this a lot in their work. Living is always good for understanding. Meanwhile they have their living to live and for you to understand.
@FlutistPride: probably my highlight would be "Hotel California" and "Put a little love in your heart", of course.