Monday, January 5, 2009

the expansive heart

Considering that today, Jan. 6, is the 12th day of Christmas, it's still ok to make a Christmas-based reference, isn't it? Well, I'm making one anyway.

I love How the Grinch Stole Christmas, that great classic by Dr. Seuss. The TV special is just classic, and I can nearly quote the whole thing word for word. Song for song. "You're a mean one, Mr. Grinch, you're a nasty wasty skunk!"

Tonight, though, I'm thinking of that part right near the end, when "the Grinch's small heart grew 3 sizes that day." You can see and hear the metal outline of his tiny, shriveled heart grow bigger, and bigger, and bigger until it finally springs loose.....the "frame" that had enclosed his heart can't hold it all anymore, because of how big the heart has grown. I think that image, the heart that outgrows its borders, is a great way to represent Moms of special needs kids. Bear with me a minute, I'll try to explain.

More and more, recently, I see how my induction into that sisterhood of "special needs Moms" has made ME so much more open minded, tolerant of differences, and better able to see the beauty in those kids who don't "come out of the cookie cutter" as a great friend says. It also becomes increasingly clear to me that almost nothing is black and is about flexibility, exceptions to the rule ARE the rule, and the realization that our kids (ALL kids, but ours especially) are so incredibly unique and special, and worthy of all of the extra time and attention we can give.

While sitting in the foyer at A's speech therapy appointment today, I "met" a young girl who arrived with her mom for PT. She was soooo precious, just adorable and happy and sweet, I could tell right away. But it was also abundantly clear that she had "something", I don't know wasn't Down syndrome, but maybe some other chromosomal abnormality or other birth "defect" although I hate that word. She was so tiny, but her head was larger and her eyes were very widely spaced. To the standards of society, she's probably considered ugly or even "scary" to look at, and maybe that's how the old me would have seen her. I'd like to think not, but.....the new me, however, was uncomfortable for about a half a second, then had my heart stolen by her smile, her wave, her sweet demeanor. I may never see her again, may never know what her diagnosis is or her prognosis, but I do know this: She's someone's child, people love her, and she is a happy child with much to offer to us if we will open our eyes and expand our hearts enough to recognize it.

One more example......we took A to a minor league hockey game on Sunday. He'd gotten a certificate at school (a reading program) for a free ticket, and was very excited. We'd planned to go for quite a while, got there and were told that this was the wrong certificate for this game, and they wouldn't accept it. This was the only one he had gotten and we knew nothing about any others. He goes into near-total meltdown mode, screaming in the coliseum lobby. Supervisors were consulted, and they confirmed that our card would not be accepted. It needed to be red, not orange, of all the ridiculous excuses they could have given.

Now these ticket sellers knew nothing about A's diagnosis, probably know nothing about autism, but that's kind of beside the point. If the idea is to reward kids for reading, encourage them to come and support the local team and create long-term fans out of them, is this the way to do it? Can an exception not be made? Would they really go broke over the freakin' $6 ticket that they're not allowing him to have? I see this clearly, and not just because he's my son, but because I know now that most rules are NOT hard and fast, and the desire to accomodate the needs of kids (especially our special ones) and encourage positive behaviors and traits should trump just about everything else. Generally, I'm a rule-follower, a "this is how you're supposed to do things" kind of girl, but the further I go down my special-needs parenting road the more I realize that my heart is just too big now to be that way any more. If it comes down to heart vs. head, feelings vs. rules, feelings win with me. It's that simple. I have to live that way, I couldn't make it otherwise.

So now, I'm about empathy, understanding, and open-mindedness in so many more ways than I used to be, because I know intimately what it means to feel your heart breaking out of the old barriers and embracing people, things and situations that you never could have imagined. Don't mean to sound all "braggy" here, because it's not that, it's just the inescapable side effect of the hand I've been dealt. Hey, you look for silver linings wherever you can find them........

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