Erik Quinn: The Heart of a Family: Getting Schooled

Monday, July 21, 2008

Getting Schooled

Did you ever know that you're my hero,
and ev'rything I would like to be?
I can fly higher than an eagle,
'cause you are the wind beneath my wings.

-- "Wind Beneath My Wings" (Bette Midler)

The week at the convention was packed with educational sessions, keynote speakers, and panels. I'll start with Thursday and Friday.

Thursday we hit the ground running after our continental breakfast. The only moment I had close to resembling an anxiety attack all week was during the first session I attended entitled "Moms Only." My slight tardiness from my difficulty locating the session forced me to sit in a chair towards the front in the long, crowded room, which is a nightmare in itself for me. When one of the women on the panel asked that the doors in the back be closed, I suddenly felt like I was trapped in a coal mine. Being trapped in a closed space with hundreds of other women isn't my idea of a good time. This is one reason you will not find me in a screeching audience of an all-male review with dollar bills tucked in my brassiere. I find it way too intense in any setting. The facilitator immediately had us place both feet on the floor for stability and close our eyes while we listened to a soothing song she played on a boombox in front of a microphone to focus on ourselves and why we were there. That helped. The women who sat on each side of me were mothers of teenagers with WS, and I was only able to briefly speak with them during our short time together but liked them both immediately. During the session, a small panel of women related their personal stories, some of which ripped my heart into tiny pieces but gave me hope that even the shards of broken dreams we have can be reassembled into something new and beautiful. At the end of the session, we were instructed to close our eyes again. The song "Wind Beneath My Wings" broke the silence, and I easily recognized the singer as Meghan Finn, a young adult with WS who has been featured on 60 Minutes and The Montel Williams Show. Her mother had spoken to us moments before. Meghan had quietly walked to the front of the room while we had our eyes closed and sung for us all without any fanfare or even an introduction. There wasn't a dry eye in the house. In fact, the sound of poorly-disguised snot sniffling threatened to overtake the song. It was a beautiful moment, but I couldn't wait to claw my way out of that room and decompress. I made a note to myself to add a package of tissues to the bag I carried.

Mike Rayburn performed for us at the next session in the ballroom, where I met Brian and my parents. He is an incredible guitar player and comedian who absolutely blew all of our minds. For some reason, I really didn't want to like the guy (my frame of mind, perhaps), but my face absolutely ached from smiling after his performance. I enjoyed hearing my parents giggling, too. He sung the words from such gems as Green Eggs and Ham while simultaneously strumming songs by Led Zeppelin and AC/DC, making them melt amazingly beautifully into each other and causing the audience to erupt in laughter. His point was that we need to approach life with an open mind and think outside the box. His performance was titled "What If? and Why Not?" Why not, indeed?

Friday we heard Richard Villa speak. He is a former teacher, special educator, and special education coordinator who spoke about the importance of collaboration and inclusion. He explained why special education as it was created in the mid-1970s failed to accomplish what it was created to achieve. He seemed to evoke a combination of a cerebral Rodney Dangerfield and a character from the Simpsons I never could quite put my finger on at the same time. He gently and completely opened my mind in terms of inclusion. I tend to bristle at the word, as it seems to be all the politically correct rage at the moment and I grew up in an era when special education was big. However, he cited many compelling facts and anecdotes that gave me food for thought. He showed us the video I have attached to this post, and as I watched it, I felt my gut knot up. Powerful stuff.

My rule for getting through raising Erik for the last three and a half years has been "whatever works." No matter what it looks like, what it may be called, or what is said to me by experts, other parents, or well-meaning but irritating strangers. After all, I am a true Erik expert. This is the precise reason Erik was tightly wrapped like a Taco Bell Value Menu item in a fleece blanket for nine months. A few people were absolutely horrified by this, especially when they saw me roll him in order to get the blanket tight (you could bounce a quarter off his body when I was finished), but it kept his acid reflux under control and he seemed more than content this way, even sleeping through the night. I will continue to seek out whatever works but am now convinced that there are even more options for Erik in his education and his life than I dreamed there could be. I may have to fight for or even create these options myself within the framework of the law, but anything is possible. I came away with proof that, generally speaking, everybody benefits from inclusion. Even typical children. In the end, though, we will simply do what works for Erik. No matter what label it has. One of my dreams for him is that he will be successful in a classroom with typical peers. It will be a long, difficult road, but I know it is at least possible.

Whatever works.

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Anonymous Anonymous said...

I love what you said about the burrito baby comments. I swaddled Sean for about the same amount of time, and boy, people would just look at me like I was performing some sort of torture ritual. "Poor baby!" they would cry. Ugh. I even had one elderly lady say, "You know, babies like to be able to move around," and she ripped off his blanket. Of course, he started crying. If I hadn't been at church, I would have said some really nasty things. I thought about punishing her by locking her in a room with Sean for a few hours, without telling her any of the bizarre ways we had come up with to calm him (like hopping, or making a ringing noise like a telephone). She might have gone crazy, and I just couldn't do it to Sean. I guess some (most?) people really do think they know what's better for your child than you do. Keep on ignoring them, for Erik's sake :)


2:46 PM  
Blogger Julie said...

Powerful stuff. I wish I could have been there.

7:02 PM  
Blogger Heather said...

Whoa! Hmmm.

4:04 AM  
Blogger Tara said...

Ahhhh, the number of times people would say mean things to us for swaddling Payton so tight. Like you, we did this for months!!! And, it worked :) Like Sandra said, it's always amazing how some people think they know your child better than you do.

12:41 PM  
Blogger Tes said...

wow. I am in awe of your writing and stunned into deep thought. I may stay here a while......

2:30 PM  

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