An autism donation & an autism memoir by an older brother

22 Feb

I received a request from a group a few weeks ago seeing if I would be interested in donating a Jac & Elsie autism bracelet to a fundraising night at the Institute for Educational Achievement.

My contact for the group sent me the IEA’s brochure, and my immediate reaction — “Of course!” — was solidified. The following graph is what sold me most:

IEA’s mission is to enable young individuals with autism to live in family environments and avoid institutionalization. We are dedicated to helping students acquire new skills that facilitate full participation in community life, and preparing them for enrollment in public schools and post-educational experiences.

My brother lives at home. It’s my parents’ mission to keep him at home as long as possible. Group homes can be helpful — and will eventually be necessary, as at 55, my folks will be 56 this year, not 54. (Ain’t it a pain how that works?) But keeping folks with autism and other developmental disabilities at home not only saves the state bundles and bundles of money, but it assures people are kept with their families. Sure, teachers and aides can enjoy working with those with disabilites — and often do enjoy it, cause let’s face it: that is not a job you get in for the money — but they are not going to love Joey like my parents do.

So a group that aims to keep individuals with t heir families? Yes, please, let me help you raise money, because you’re awesome.

Over the weekend, I finished a book I was in the midst of when I received the above request. “Boy Alone” is a memoir by Karl Taro Greenfeld about his brother, Noah. Noah is two years younger than Karl, and he has autism. I love reading autism memoirs, and this was the first I read by a sibling. Noah was diagnosed in the 1970s, when autism was still virtually unheard of. His family tried to care for him as much as they could, but Noah was violent. He pinched and hit. He spit. He shat in the middle of the floor. He threw tantrums. He was enough trouble that his parents, who wanted to continue to care for him, could no longer do it.

Unfortunately, the very best place they could find for Noah was one that would withhold food to punish him, and it rewarded him with food. He lost weight quickly and changed the way he ate, gulping food down when it was given because he knew it might not come again in a while.

The institution also would invoke corporeal punishment if Noah misbehaved. His parents would find bruises on his back and arms despite their insistence that Noah not be hit. They eventually pulled him out of the institution and found caregivers for him. Many weren’t much better, abusing him physically and sexually.

Needless to say, it was a hard book to read.

It’s not the 1970s anymore, but keeping people with autism out of institutions is a goal I can fully get behind.

I donated one autism bracelet, as the IEA requested, and an autism necklace:

The one I made has a clear bead, a light blue bead and a cobalt blue bead.

This is the exact necklace I donated, with a genuine pearl.

These items, along with other donations, will be auctioned off in late March for the group.

If you would like to donate to the IEA, here’s how. I donate a portion of Jac & Elsie autism items to Autism Speaks, but if you purchase  one and would like the donation to go to the IEA, just leave a note. I’m happy to help this group.

There are some “Boy Alone”-related reads, if you’re interested: The New York Times, Huffington Post, Time. The Time article was written by Karl Taro Greenfield, Noah’s older brother. There may be some more “Boy Alone” thoughts coming from me. It was a hard book to read.


2 Responses to “An autism donation & an autism memoir by an older brother”

  1. Alison February 22, 2012 at 9:06 pm #

    Love this. So sweet of you to donate. 🙂

  2. Ally February 22, 2012 at 10:00 pm #

    This donation is fantastic. What a great organization.
    The book seems like it would be really difficult to read, for sure.

I'd love to hear what you think!

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