Friday, April 3, 2009

Hide or See?

It's the morning after...World Autism Awareness Day. Yesterday, I was betwixt and beholden to post something, anything....but not knowing quite what?

I actually struggled all week with procrastination. My husband's absence on a two week surfari and several extra writing projects (Form 1023 for a 501 C3, brochure copy, and website for Banding Together) have combined to erect a sizable writer's blockade in my mind. My expressive language may be delayed but the receptive is graciously intact; I am still reading my RSS feed! Listening to this talk by Jess Wilson's at the Greater Hartford Autism Speaks Walk Kickoff released the floodgates for me:




So, I pray this morning after and all month (since April is Autism Awareness Month), that people will take that momentous first step and be more aware. As Jess says, "awareness is not the end goal but the first step." Like a parent witnessing a toddler take her first wobbly steps, I audibly gasped to open a post yesterday on the Living Proof Ministry blog. To my surprised delight, Beth Moore, the mega-Bible teacher, acknowledged World Autism Awareness Day by sharing the testimony of a mom and a call for prayers in the comment field for others experiencing autism. I love it when worlds collide like that and I hear about autism (my one planet) in an evangelical faith blog (my other zone) or in my husband's surfing environmentalism sphere. Truly, that cross pollination is evidence of growing awareness.

I spoke a couple weeks ago to the Mothers of Preschoolers (MOPS) group that meets at our church. The topic they gave me was "Raising a Special Needs Child." Knowing there'd only be a few in the audience who'd consider themselves in that category (in those tender years), I tried to generalize my points to make them more widely applicable. At the outset, I asked for a show of hands, "how many of you know a child with autism...be it neighbor, cousin, nephew, or classmate?" I was stunned when 80% of the hands went up. Had I known, I might have prepared differently and shared our story with an emphasis on "ways to help a child with autism." Next time:)

As Jess Wilson mentions, this is why we tell our stories, it is why we blog, and why we don't hide in our houses. Our transparency and willingness to be vulnerable in our own circles of influence, are how awareness happens. If the world is ever going to be a hospitable place for our kids to live independently, we need to educate. If awareness is the first step, then the ultimate goal is full inclusion.

I've been convicted lately within our church of ways that I have chosen to cop out and take the easier path of hiding, rather than doing the instruction that must precede inclusion. We practice our own avoidance strategies don't we? First for survival, and then out of habit. For example, my family has not been to an All Church Retreat in 11 years. Reid has not been included with his same age peers in Sunday school since 3rd grade. At that point it seemed easier to keep him with us in the sanctuary, under the shelter of our wings, so to speak. To side-step the unstructured, choatic coffee hour, we've taken the liberty of letting him watch a video in an empty upper room. Not too many people are "aware" of this arrangement; Reid is truly out of sight out of mind, for them.

Granted, it is emotionally draining to be exposed all the time. And educators have a high burn out rate. Lately though I am feeling that in our family, we've reached a tipping point where our "hiding" is doing a disservice to Reid and to others. In the name of self-preservation, I have robbed our friends and community of powerful, life-changing interactions that God may have intended for their personal growth.

Biblically speaking, my son (and everyone of us) is indispensable to the body of Christ. For a time-- in my exhaustion, isolation, and vulnerability to the Enemy--I bought the lie that it was selfish for me to ask for extra staff, a buddy, or modifications in order for Reid to participate in church events. I am beginning to see that without realizing it, I may have denied others the opportunity "to receive the gift of Reid" in the words of our senior high youth director. The truth is: it is actually prideful of me to take care of it myself.

It's the morning after...what have you learned?



The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. 1 Corinthians 12:21-23


God made my life complete when I placed all the pieces before him. When I got my act together, he gave me a fresh start. Now I'm alert to God's ways; I don't take God for granted. Every day I review the ways he works; I try not to miss a trick. I feel put back together, and I'm watching my step. God rewrote the text of my life when I opened the book of my heart to his eyes. 2 Samuel 22:20-22 and Psalm 18:19-21 The Message


So if I, your Lord and Teacher, have washed your feet, you also ought to wash one another's feet. For I have given you an example that you also should do just as I have done for you. " I assure you: A slave is not greater than his master, and a messenger is not greater than the one who sent him. If you know these things, you are blessed if you do them. John 13:15-17

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