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

Starfish, Starfish wonder what you are...

This little ditty on Sara Groves' Station Wagon CD spun through my head as I spotted something on the surface of the sand and lunged for it like treasure.

starfish starfish wonder what you are fish
time and tide go washing by and
you don't even care

peaceful creature come and be my teacher
flotsam, jetsam swish and swirl.

I'm not saying I remembered all those lines at the time and obviously I got my sea creatures mixed up. Not until I sit to write this, did it dawn on me that I found a sand dollar not a starfish....pshchw details! Treasure is treasure and I don't happen to know a sand dollar song! Do you? The tune put me in mind of the book, One Small Starfish by Anne Addison which is excellent resource...which led me to...the mind races so fast from one thought to the next, you know how it goes. Soon the the ideas turn into ones that you know aren't your own. They take on a symbolic, metaphoric, distinctly divine quality.

The thoughts flooded so fast I could identify them as from God. I can't fabricate ideas that quickly let alone spell them out in words. I have learned to run my thoughts through two filters in order to prove them of God. First, do they correlate with Scripture? Second, do they agree with His nature? If yes on both counts, then I take it as from God to me. If no, then the voice could be my own or that of the enemy. Indeed, these sounded like His voice.

What a glorious, sunny, low tide shore! No question, I'd found a whole sand dollar. Stoked, I turned it over in my hand to see the underside. Despite it's unquestionable wholeness, it had a definite dent. Not broken or cracked, just pushed in...wow...almost as if it were an organic 3-dimensional model of the top down SPECT scan view of Reid's brain I had just reviewed with a third psychiatrist. Smack dab in the right front quadrant was this considerable impression. Hmuh?...an uncanny representation of the white hot, overactive spot that makes his scan resemble a stop action photo of fireworks lighting up a July sky. The hot spots, otherwise referred to as a "ring of fire," were top priority to treat. This little gem of a sand dollar reminded me of my fearfully and wonderfully made boy in a split second. He is an incomparable find...placed in my path...specifically for me...unique, beautiful and whole...impressive and impressionable...that, like the sand dollar, arrived smaller than average.

Just steps down the beach, I found another sand dollar. What a day! Is this one Allie? Bigger, cleaner, not perfect either, but more speckled and gray than marred, like the first. My steps quickened to instinctively "show and tell" with two little girls playing in my stride. "Look, wanna see what I found? Aren't they special?" I imagined saying these words as well as, "You can keep it." Before I could utter them, they caught in my throat with ostenstibly selfish thoughts like, "They're mine. Finders keepers. You can look but, please don't touch them." I walked quietly by instead of stopping. Now, intentionally keeping my mind open to more thoughts from the Father. "Keep them, they're for you today," He seemed to say.

Hmmm...keep them as a sign...of this push and pull dynamic that is perpetual for mothers...like letting out and reeling in the line of a kite. Relinquishment and responsibility. How many times have I revisited this parenting topic? When will I have done it sufficiently and in a healthy way without one ounce of rationalizing? In my head, I know the goal: our kids are not our own; they come from God; they are arrows in our quiver to be sent forth; ours for a time to prepare for independence. Heart knowledge is a different matter.

How many layers must there be to this teary onion? I have released my kids multiple times and in myriad ways, yet still I catch myself with hands grasped figuratively, hanging on with a comment, or controlling through an expectation. Am I hoarding my kids as treasures or sending them out for the glory of God?

I gave Reid the middle name of Samuel knowing full well the story of Hannah's infertility and her bargain with the Lord if He remembered her. Like Sarah, I named Reid Samuel because "I asked the Lord for him." But could I also "give him over to the Lord for his whole life" like she did? Not exactly. I could barely send him to school at age 13, let alone leave him to be raised by priests. I recall a relinquishment prayer exercise embedded in Catherine Marshall's book, Adventures in Prayer? More than once, it has been an issue for me.

Clearly, relinquishment is more a process than an event. At first blush, it sounds like turning someone over to the wolves. As an adoptive mom, it also smacks of the dreaded rejection curse which has deep roots we don't want to dig up (let alone reinforce in anyone's spirit). The nuances of it though, involve trusting people and powers outside myself. As a special needs mom, I have done significant mental wrestling before trusting nursery workers to love my child, Sunday school teachers to accept his quirky behaviors, an audience at Borders to receive his singing well, neighbors to figure out how he's different, playmates to perceive his ill-expressed intentions, teachers to be insightful, wise, and responsive, babysitters to be of good character, even family to expand their minds and hearts. So it is, that relinquishment and trust are inextricably linked.

For Reid to ever have hope of an independent, full life (that remotely resembles his sister's), I have to squelch my own internal control freak and let go of protecting him, speaking for him, answering for him, meeting all his needs. I need to trust numerous others to stand in those gaps. Sounds easy enough but is hard with a child who has unpredictable development and neurology.

During a season of perpetual anguish when I was exhausted and unsure how to help Reid or know what to do next, I sought healing prayer for both of us. I envisioned myself helpless on a shore and described Reid as a boat floundering at sea in high winds, adrift without a rudder at the whim of a raging storm. Truthfully, at that time he had little control over his own body or mind--the embodiment of vestibular anarchy. The answered prayer came not as a solution or reply but as a picture of Jesus with him in the boat. Much like the disciples in Mark 4, Reid was and is and actually will be fine because of that single fact alone. Jesus is with Him. Can I yield to that? Can He be trusted?

Jesus Himself was in the stern, asleep on the cushion; and they woke Him and said to Him, "Teacher, do You not care that we are perishing?" And He got up and rebuked the wind and said to the sea, "Hush, be still." And the wind died down and it became perfectly calm. And He said to them, "Why are you afraid? Do you still have no faith?" Mark 4:37-39

"...the LORD was not in the wind. And after the wind an earthquake, but the LORD was not in the earthquake. After the earthquake a fire, but the LORD was not in the fire; and after the fire a sound of a gentle blowing. 1 Kings 19

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:7-9

www.pacificwilderness.com, www.donnan-family.org.uk/mystic_boat.jpg, www.nefsc.noaa.gov/.../violet%20starfish.jpg

Why Do You Walk? (or don't you)

Autism Speaks has been shrouded in controversy for awhile. Our San Diego Walk is next Saturday and although I part company with Autism Speaks on issues of style and some content, Reid and the Kingsmen do still sing at this local event. It is a great performance opportunity for them with a receptive audience of wonderful people on the same pilgrimage. The Walk Now for Autism is the single largest unifying event of families like ours, here and most likely, in your town too.

Our walk team this year is dubbed the "Kingsmen Roadies."  Our focus is supporting the band and displaying their talent, development, and potential to the autism community.  Who better to celebrate their accomplishment than those in the same boat who live the odds we've face to arrive at this point?  Who better to encourage, than families farther down the pike who need hope for their kids?  

No human being and no human organization is perfect. Not Autism Speaks, not TACA, not ASA, not the church. Although I still publicize and promote the walk as a chance to cheer Reid on, I always downplay the solicitation angle. Distrust and suspicion have made me wary. I give a small donation myself in solidarity for a compelling cause in my life...and in pursuit of balance. At the same time, I feel honor bound to recognize both sides of the story. This article by Cody Boisclair is one of the best I've read of many objections to the largest autism organization in the country. It was posted on the Autistic Self Advocacy Network website which does just what their name claims.  They provide a forum for articulate adults on the spectrum to voice their informed opinions.

Just as I cannot be a single issue voter, I think we ought not be single issue donors. They've made mistakes.  Autism Speaks has also done a tremendous job increasing public awareness and engaging the media.  So, I support with a caveat. Object while being involved. And hope to wield influence.

To me, tragedy doesn't sell, hope does!  We experienced some of both at the Team Captain kick-off meeting before the walk.  Reid and a fellow Kingsmen band member (who also loves the limelight) are always proud to do musical solos at the Crowne Plaza banquet hall where the rally is held.  For the last two years, their performances have been unintentionally ironic.  As if in spontaneous debate with the typically depressing Autism Speaks platform, their songs corrected the record.  

I don't know if it's this way in every city, but in San Diego, the agenda includes a plethora of announcements and an invited speaker whose job, I would think, is to demonstrate how funds will be put to good use.   Well, twice now I have felt the speakers were not only tearfully boring, but also inappropriately negative.  They portray autism in characteristic Autism Speaks' fashion as a tragedy and the children diagnosed with it as a burden.  This is a real problem for me, on many levels and especially when present company includes my son, who is a heritage from the Lord, a blessing and the joy of my life; thank you very much!

I am uncomfortable with the placards on each table that show a collage of testimonials in answer to the question, "Why do I walk?"  Each more pitiful than the next, they send the wrong message to the capable teens and adults with autism who are well able to read them as they wait their turn to go on stage or be featured in other ways.  As does the statistic-filled video they show that infers my child and others across the country are numbers or worse a crisis, rather than individuals created in God's image with a plan and a future as the Bible is clear to say about all children born into this world.  I'm "gettin' my preach on," as my favorite prophetess, Ginny Owens, says.  All I could think sitting there was, "how will I would correct these fallacies entering his eyes and ears with truth as soon as possible?" Not to mention, "Should I walk? Do I have to walk? Why am I here?"  

Oh, it gets worse. (You're going to think this is fiction.)  This year's scientific speaker was a doctorate director of a local brain tissue donation program.  She talked at length and in graphic visual detail, about how dead brains of children can be useful to science and asked us (not for money) but to consider donating our kid's brains after they die, of course!  This is true.  She even introduced a grieving woman who had done so, and had her stand up for applause at the front table.  What makes that a rallying point?  And who considers it in good taste?  I was not opening my wallet, let me tell you.  I continued to think, "How can I get out of here?  "Why don't they have a backstage area where I could wait out these offensive speeches with my son who is very much alive?!"  

Until, finally, it was the boys' cue. Reid bounded up on stage in his characteristic way belted out "Hey Jude" by the Beatles, taking a sad song and making it be..eh..eh..tter.  Then, Kenton in all his innocent, 10 year old glory walked up to the mic and sang Ray Charles' "I Don't Need No Doctor," with a few modified lyrics but the same punchy refrain. This is John Mayer singing it, but Kenton was better!

I hope it did not offend Dr. Jane Pickett, the director of the brain tissue donation program.  I hope it did wonders for her perogative on the living. 

Where I end up on all this is, I am attending the walk, promoting my son, and quoting truth to all who will listen.  The Bible talks about being "in but not of the world."  Is it possible to be in but not of Autism Speaks?

But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.  1 Corinthians 1:26-28

For God did not send his Son into the world to condemn the world, but to save the world through him.  John 3:16-18


Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is—his good, pleasing and perfect will.  Romans 12:1-3 

photo credit:  farm4flikr.com

Climb, Hike, Swim and Walk WITH Autism

We hear a lot about walking for autism. Our San Diego Autism Walk is fast approaching on November 1st in Balboa Park, San Diego. Reid will perform with his band, The Kingsmen, which is always fun. It is good to see a new twist and trend of individuals with autism taking matters into their own hands to raise funds themselves rather than be recipients of the funds.

Autism Vox recently referred to two athletes with autism who are raising money for others. Jay Serdula, swam for autism. Here is his blog or here on youtube.

Giving to others is crucial to our sense of purpose. Dr. Dan Gottlieb points this out dramatically in his fabulous book, Letters to Sam. As he lay in a torturous halo device bolted to his skull, unable to move after a paralyzing car accident wishing he was capable of suicide, a nurse confided in him about her own depression. Having learned he was a psychologist, she asked him for help and advice. It was in that moment, realizing he actually could help her--even in his dire state--that his own will to live was restored. The nurse's expectation of him was more effective than any cheerleading or soothsaying from well-meaning family and visitors. His epiphany that he still had something to give, provided a reason to continue living.

I highly recommend the book. It is outstanding on many levels. Dr. Dan began writing letters to his grandson when Sam was born, aware that his own life expectancy was diminished as a paraplegic. The tone and content of the letters changes as the grandson is diagnosed with autism. Dr. Dan realizes he is in a unique position to empathize and prepare Sam for a life of being different--whether due to paraplegia or autism.

Tis truly better to give than to receive. Brain Highways is a local program from which Reid has benefited enormously. Its founder, Nancy Green, is a gutsy visionary genius who, among other out of the box ideas, has challenged her clients to give to others and make a difference in the world. What makes that gutsy is that all of them are enrolled in her program needing various degrees of neurological re-patterning. Endlessly empowering them to use their brains, she has mobilized small throngs of kids with enough labels on them to fill vats of alphabet soup, to give to someone needier than them. They have personally collected and delivered food and supplies to children in a homeless shelter. Just recently, a group of Brain Highway kids raised money for Cancer Angels, walked in their walk and attended their benefit dinner. Rather than the blind leading the blind; she has created a powerful example of the needy helping those in need. Her expectation of the kids demonstrates how capable they actually are --to the community, to their parents and to themselves. Lest they embrace a learned helplessness that can result from a lifetime of therapy, she proves they can make a difference with whatever skills they have today!

Clearly, giving is therapeutic, healing, and life saving--for the giver. Maybe we could coin a whole new intervention program of "Giving Therapy" with Board certified clinicians, hourly rates, and clinical fees....just kidding. It's way simpler than that. Start looking around for ways to serve, whether it be having a talent show in your garage and giving the ticket money to a homeless man, or volunteering to do the A/V controls at church (a job Reid loves), or carrying off the dinner dishes. As Bob Dylan says, "You know you've got to serve somebody."



Timely enough, my niece will be hiking the Appalachian Trail in March with a new organization, Train 4 Autism. Check out her page. I praise God every time we see her that she has embraced Reid as he is. She appreciates his unique view of the world and allows his exuberance to inspire rather than embarrass. Kathryn has seen first hand the daily challenges and surprises that come our way. I admire her response which is gracious, generous, and self-less. She has made a way to use her personal passion, abilities, and experience to give to others.


In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: 'It is more blessed to give than to receive.' Acts 20:34-36


Each one should use whatever gift he has received to serve others, faithfully administering God's grace in its various forms. 1 Peter 4:9-11


Serve wholeheartedly, as if you were serving the Lord, not men... Ephesians 6:6-8