"Erasing Autism," is the title of the article in Newsweek. The illustration jars my spirit. It would be wrong to cut Reid out of our family portrait. The ultimate exclusion. Equally wrong to eliminate him from the church body or society at large. Kudos to Ari Ne'eman for having the courage to stand up in Washington and defend neurodiversity.
Since they were born, I have felt my utmost purpose as a mother is to assure both my kids that their lives are on purpose and their position in our family is secure. Adoption has heightened that goal in my mind as much as (or more than) autism.
This article comes on the heels of NPR, Time and GQ reviews of Karl Taro Greenfield's book, Boy Alone: A Brother's Memoir, about his brother Noah who is now, in fact, a man alone with aging parents and a brother who will not necessarily be his keeper. While I admire Greenfield's honesty and empathize with his circumstance, I am saddened by the bitterness, resentment and cruelty in his voice. As a mom, I hope to model and instill values that will dictate a different prerogative in my daughter's life as a sibling.
This double assault to my sensibility is a stark contrast to where my mind dwells. It reminds me of a huge victory my daughter scored over the Enemy last summer when she proclaimed God's sovereignty in designing our family.
Arguably, Allie has withstood the most potentially damaging impact of Reid's autism. The demands of his behavior and intervention could certainly be breeding grounds for resentment, perceived neglect, and anger. She would have every earthly "right" to object and could have the most to gain by erasing Reid from the proverbial family album. Oddly, ironically, fortunately, wisely, she does not desire that. Like Ari Ne'eman, the Aspie in the Newsweek article, she is close enough to the reality to be an informed expert witness. She also has absorbed enough of God's truth from the Bible that it is the plumb line for her attitude toward her brother.
Last summer, we found a winning solution to the recurrent and age-old question of how to vacation with extended family. My generous, peace-loving mother rented us our very own place a mile or so away from her vacation home. In her words, "it was the best visit we'd had in 14 years." Not being under the same roof turned out to be a key to enjoying a week together. There was no comparison between her model home "Moor the Merrier" and our "Duck Inn" on the Isle of Nantucket. To each his own. Truth be told, we preferred the sunken sandy threshold and indestructible nature of the Duck to her pristine white slipcovers and fine bone china collector appointments. Can you say, damage control?
We enjoyed lots of different pairings of cousins and aunts without the tension of sharing bathrooms and sleep patterns. My mom claimed one night to herself with Allie--an intentional effort to compensate. Woohoo! Fancy schmancy time alone with grandma to shop in Nantucket town and sleep at the big house under 500 thread count cotton sheets. Score! Reid stayed behind with us in the beater, low-rent, rental shack we'd pragmatically chosen. There was a wistfulness to their departure, recalling what might have been, reckoning what is "normal" and even wishing life were different. We all felt it.
That night, as Allie scampered off excitedly for their girls night out, she remembered she had not said goodbye to Reid. She asked my mom if she could go back in to do so.
My faithful mother has experienced her own loss in regard to Reid's autism and our family's reality. When Allie rejoined her in the car she couldn't help but notice, "Oh, Allie, you really love Reid don't you." Allie said, "Oh, yes I do. He has come so far. I used to wish Reid didn't have autism but now I am glad he does because I have learned so much. I am much more patient than I would be otherwise and life would have been so boring. I wouldn't be who I am if it weren't for Reid." Further discussion about the fruits of the Holy Spirit ensued. Without any hesitation, my meek, sage, spirit-filled Allie, had edified the moment and "taken her thoughts captive and made them obedient to Christ." 2 Corinthians 5:3-5
We learn from children. I learn from Allie. According to the Bible, the Kingdom of God belongs to such as them. Allie's perspective even on adult issues, is an example to us. If the ultimate spiritual rebellion is to think we can make decisions that belong to God alone, then the converse is what I'll strive for instead. The ultimate spiritual obedience is to accept from the hand of God all that He allows in our lives.
Each of you should look not only to your own interests, but also to the interests of others. Your attitude should be the same as that of Christ Jesus Philippians 2:4-6
For the word of God is living and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart. Hebrews 4:11-13
"For who has known the mind of the Lord that he may instruct him?" But we have the mind of Christ. 1 Corinthians 2:15-16
Thursday, May 21, 2009
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You are a powerful-good writer and unfold-er of Biblical verse.
ReplyDeleteBarbara
Siblings. We share the same concerns.
ReplyDeleteSweet Allie. Her kind heart has absorbed God's Truth and your teaching and example -- it's no wonder she is as wise as she is.
ReplyDeleteHope to meet your dear family on your next trip to Nantucket.
Whew. I'd read the Time excerpt but not the GQ one... the latter is much darker. I was struck in the GQ excerpt by the mention about how Karl only remembered playing one time with his brother -- back when Noah was 2 and he was three. That's so different than what happens between my girls (now at 5 & 7), and obviously other than the dynamic between Allie & Reid as well. Maybe spectrum-severity plays into what happened with Noah and Karl, but I wonder about parenting approaches too ("model & instill values that will dictate a different prerogative in my daughter's life as a sibling" -- so well said!) And faith. Always faith.
ReplyDeleteGreat post Andy. Reading Al's words made my eyes well up. What a wonderful person she's becoming.
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