Wednesday, August 1, 2007

Where's Molly

I was clicking through CNN (like I do every day) and came upon an article about a new documentary called "Where's Molly?"

The man that made the documentary, Jeff Daly, lost his little sister Molly when he was about 6. Molly wasn't quite 3. Molly had a few problems: a lazy eye that didn't respond well to surgery, a club foot, and possibly some developmental delay. As was the custom, his parents were advised quietly by their trusted family doctors to send Molly away to an institution. Like all other parents of disabled kids, they were told that it would be "better" for them, for the child, and for the extended family.

Jeff recounts how he asked about his little sister every day, and was told, "Stop asking about Molly." His parents wouldn't discuss her with him, and for years, he had no idea what had happened to her.

It struck me, reading this article, that if I had had my Rachael years earlier, I, too, would have been pressured to institutionalize her. That chills my blood to think about. As much as I worry about her now, I don't know how these parents, or hundreds and hundreds more like them slept knowing that their children were, for all intents and purposes, jailed and warehoused because of their disabilities.

I guess we can thank President Kennedy for pushing through a few laws that gave the disabled some rights . . . rights to live free, to receive the education that they are capable of receiving, to work, to be productive.

I don't pass judgement on these parents, I really don't. I know the pressure that parents of disabled kids face: even now, we are pressured to listen to the experts, to accept their opinions as gospel, to not question school officials and therapists and hospitals, to accept whatever they deem is best for our kids.

Being Rachael's case manager has been a daunting task, one that I had alot more energy for a few years ago. These days, what I lack in energy, I make up for in experience. Teachers hate to see me coming when it's time to discuss Rachael's education plan. Doctors rub their foreheads when I make them listen to me. See, I have a PhD in Rachael. I made her, I love her, I live with her, and I have studied her quirks and idiosyncracies for nearly 12 years now. I know her many strengths, her challenges, her struggles, and her victories, all of them.

Sometimes it's been hard, really hard, but I'm glad Rachael was given to me, just the way she is. I'm glad no one forced me to give her up, citing medical credentials. And it breaks my heart to think of how many parents fell victim to what I was able to dodge.

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