No sooner had I posted the article on Bittersweet Farms in Ohio than I received this one about the L'Arche community in Tacoma, Washington. Residents maintain a farm, create and sell products at local farmer's markets, and engage in meaningful relationships. They are a family group committed to a simple life and conscious of spirituality. Why does this ring a bell? After a bit of research and head tapping, I remembered. L'Arche is the place that inspired several of Henri Nouwen's books (one of which I read years ago before my interest in autism). He is one of the fathers of contemplative spirituality. While living with people with developmental disabilities, Nouwen's understanding of service, relationship, connectedness, faith and Christ-likeness was redefined. He writes about how he benefited from their presence.
L'Arche means "the ark" in French. My license plates have read "2 BY 2" since my kids were a year old. The selection of these vanity plates is a triple entendre. I'm not sure the average passerby gets any of the three references. More than once, men have chuckled and commented on my plates thinking I am making an anti-4-wheeler statement, as if to say, "Awww that's cute...she only has 2-wheel drive." Little do they know, it referred to the lovely picture book we read every night at bedtime, Twins: Two by Two by Catherine and Laurence Anholt. Their whimsical illustrations of boy and girl twins (like ours) show them role playing various species: crocodiles splashing in the bathroom, kangaroos jumping into bed, and mice all curled up asleep. Memories...!
The 2 BY 2 plates were also a more overt reference to Noah's ark in celebration of our babies arriving as a pair. Our vehicle was decked with double car seats and life felt suddenly like an epic adventure. As it was for those boarding Noah's ark, we distinctly felt that God was intervening in Allie and Reid's lives. He was lifting them, as it were, through adoption, from one setting to quite another for reasons they could not understand.
Thirdly, 2 BY 2 is a Biblical reference to the way Jesus sent out his disciples. Never alone, always in pairs, they were sent to spread the good news. It continues to comfort me to know we are not alone either in whatever task he calls us to do.
So, the L'Arche concept resonates on many levels. Is there one near you? Has anyone had personal experience with L'Arche?
"After this the Lord appointed seventy-two others and send them two by two ahead of him to every town and place where he was about to go." Luke 10:1-3
"...they went into the ark to Noah by twos, male and female, as God had commanded Noah.Genesis 7:8-10
"Blessed are the meek, for they will inherit the earth."Matthew 5:4-6 photo credit: www.larche.org; www.anholt.co.uk
Casdok, aka Mother of Shrek, has created a new blog. Faces of Autism is an online photo gallery celebrating individuals on the autism spectrum. Check it out and add yourself, your loved one, or look for Reid! He is indeed, impossible to capture in just one photo but the one I picked does lay claim to his gregarious sociability with strangers and exuberant joy. He loves music and loves the Lord, so that day at the House of Blues' Gospel Brunch put him in his element. No qualms at all about posing with those buxom ladies! Or joining them up on stage for that matter--next time.
Casdok's ever positive and constructive outlook reminds me of the verse Jim and I chose 22 years ago as a reading in our wedding. It is the origin of all positive thinking, self-help strategies that have followed.
Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Philippians 4:7-9
The practice of this verse has followed us through life by necessity. It is both fascinating and faith-building to realize how that has happened. We chose the verse at 20-something, completely naive of what particular trials and tribulations would become our life's journey. As if prophesying the twists and turns that would characterize our future, the verse has become a mantra for the ride. God, not limited by time or space, saw fit to give us confirmation and a comforting sense of destiny as we look in hindsight at what we stood for, signed up for, and in fact, what he had in store for us, as a partnership and then as a family. What we could never have anticipated, He knew. And He found a way to speak it to us through His Word in the present then, just as easily as if He had told us, "This verse will come to define you..." or "You're going to need this one." Or "Listen up, I'll give you a little hint."
Here's another example. When attempting to adopt, Jim and I wrote a sort of resume, as was protocol, about us as potential parents. We sent it to hundreds to make our desire known and hopefully meet potential birthmothers. At the bottom of that letter, we added this hopeful verse: "Now to him who is able to do immeasurably more than all we ask or imagine...to him be glory...for ever and ever!" Ephesians 3:19-21
Well....lo and behold, that verse came true literally, when we matched with a birthmother who was expecting twins! He had indeed, done immeasurably more than we had asked! Our thrill at getting the ultimate twofer--a boy and a girl--fueled an adrenaline rush that lasted at least 48 months. That was way beyond our wildest dreams and more than we would ever have dared to even utter aloud. God must have had a little chuckle, when we were printing those cover letters, knowing as He does, all that has ever come before and will ever come to pass.
Do you have a life verse? Is there a verse that follows you in a good or bad way? If not, claim one and see how God will use it in your life.
My heart says of you, "Seek his face!" Your face, LORD, I will seek. Psalm 27:7-9
Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. 1 Corinthians 13:11-13
The LORD make his face shine upon you and be gracious to you...Numbers 6:24-26
What a dignified, empowering, and productive concept. Bittersweet Farms is an 80-acre working farm in rural Ohio (my home state). Working the land and calling it home are adults with autism. Recognized nationally, Bittersweet Farms also provides consultation to others wanting to replicate their model. An article in the Toledo Blade chronicles its success and a book was written about Bittersweet as well.
I watched a fairly depressing documentary this summer called Her Name is Sabine. I don't exactly recommend it because I prefer more hopeful stories. However, I mention it because Sabine ends up in a bucolic group home with caring people that looks as sweet as Bittersweet. The pity is that before arriving there she has been victim to all manner of mistreatment and damage.
We all need work to do. Work gives us purpose and a sense of importance. Some local homeschooling guru pointed out that when you get right down to basics, all kids really need is something to love, something to think about, and something to do. When I initially heard that, we got a dog. And, re-vamped the chore chart. Reid is more cooperative and pleasant (therefore so are we) the afternoons he is busiest. Homework, piano lessons, band practice, and garbage night keep him on track. Those days actually go smoother than the days when he has free time. I have come to loath 3 day weekends with nothing on the calendar, let alone summer, when free time abounds. I associate them with the inevitable breakdown, meltdown, and video stimming that is a downward spiral for our family. On the Escalation Cycle page of his Behavior Intervention Plan, at the very top is "down time." Unstructured time is the primary antecedent of his battery of negative behaviors. Now, do you see why I over-program family reunions? It's a good thing Jim and I are both Achievers so we can keep up with this. Incidentally, so is Reid.
It will indeed be bittersweet when our kids move out of the house. I am not sure what that will look like for either of them but I like to keep a few ideas in my back pocket. Does anyone have firsthand knowledge of these places? In the meantime, we have work to do.
Sow your seed in the morning, and at evening let not your hands be idle, for you do not know which will succeed, whether this or that, or whether both will do equally well. Ecclesiastes 11:5-7
As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work. John 9:3-5
May the favor of the Lord our God rest upon us; establish the work of our hands for us— yes, establish the work of our hands. Psalm 90:16-17
"Go to the ant...observe her ways and be wise...having no chief, officer or ruler, prepares her food in the summer and gathers her provision in the harvest." Proverbs 6:6
I have just discovered a new blog, Mama on the Edge. Mama Mara is hilarious and gut wrenchingly honest. I laugh until my eyes water at posts like The L Word at our House is Lithium and Anatomy of a Morning. The brutal reality of them convinces me on some days, that I am not alone, and on others, that it could be worse. I'm a little taken aback actually. What is it about tragic comedy that appeals? Is it just me?
Laughter is good medicine, all agree. Mara gives me a channel to tune into for a healthy release. I had a morning like hers where Reid and I were in a total stalemate while the bus honked at the curb. The internal pressure and helplessness of not being able to control his actions--namely, get him dressed and on the bus--has to go somewhere. Better to come out in laughter than in anger. It has been said, and regrettably, I can vouch that the worst kind of violence stems from helplessness. I just don't feel at liberty to express my rawest feelings. Inhibited am I. Mama Mara does it for me. She is an online surrogate where we can all do a little corporate ranting.
Laughter, especially at ourselves, releases us from all sorts of paralysis--pride, control and pure tension. Of course, if we're not laughing then we're crying. And that is way more debilitating and unattractive.
In Chicago, my personal year in the desert, Reid was diagnosed and my husband was gone Monday through Friday on business in San Francisco. Mind you, we had just moved from California for a job that was too good to refuse. In less than a month, he was basically commuting back there by plane, while I remodeled and listened to people ruin my life by speculating what was "wrong" with my precious toddler--out loud in front of my other precious toddler! Go figure. (I'm grateful it was not 40 years.)
I would alternate between crying myself to sleep on the couch and watching Mary Tyler Moore for solace. You get the connection? Picture Mary pitching that blasted package of meat in the proverbial basket. (I know it was a grocery cart.). Her undying optimism couched in cynicism and satire, made me laugh. Everybody sing, "We're gonna make it after all...du do dewt do...dute."
One of my favorite books is about a woman fairly trapped in the 50's with 10 kids, no car, and an alcoholic, abusive husband. Sounds like a masochistic tragedy until you read the book, The Prize Winner from Defiance Ohio: How My Mother Raised 10 Kids on 24 Words or Less. Written by one of the 10 kids, it is the funniest book I've ever, made all the better 'cause it's true! The mom, Evelyn Ryan, is a prototype of modern day mommy bloggers, maybe specifically, autism mommy bloggers. Her creativity, wit, and writing acumen lift her out of impending doom. She cranks out fabulous advertising jingles, enters them in the popular contests of the day and wins! She wins BIG, to the tune of paying off the mortgage and putting kids through college. It is a tragicomedy filled with redemption, love, and hope. As always, the movie doesn't do the book justice.
Is there a tragicomedy in the Bible? Job is tragic but I'm not sure how funny he is. Reading Job makes most of us realize we have it pretty good (no leprosy, multiple family deaths, loss of livelihood). His lifetime of belief offers principles on how to get through the difficulties we all face in life--some for days, others for years at a time. Beyond Job, the Bible is laced with humor, real true grit, and way more hope than Mary Tyler Moore. God still considers David a man after His own heart, despite an affair on his roof and the arranged murder of the woman's husband (2 Samuel 11). Saul is taking a leak in a cave--do we need to know this?--when David cuts apiece of his robe but doesn't kill him as easy bait (1 Samuel 24). Sarah laughs in God's face (Genesis 18 ) to learn she is pregnant at age 90! Now, that's tragically funny.
A joyful heart is good medicine, but a broken spirit dries up the bones. Proverbs 17:21-23
Consider it all joy, my brethren, when you encounter various trials, knowing the testing of your faith produces endurance. James 1:1-3
He makes the barren woman abide in the house as a joyful mother of children. Psalm 113:8-9 http://www.pajamamania.com/product4601.html
Where have I been that I just learned about Tim Page, a Pulitzer-winning music critic who was diagnosed with Aspergers as an adult? This clip of him as a boy is a rarity. Who knew what path his life would take when it was filmed? The full-length film can be ordered here from The Hoffman Collection.
This brief NPR interview with him references the article, Parallel Play, that he wrote for The New Yorker about his childhood. Both will endear him to you.
I am glad his early obsessions of filmmaking, music, and words were seeds of greatness that grew. Through them, he has arrived at a prominent place in society. For our kids, he role models the awkwardness and hard work it takes to figure out social skills. To educators, he is a crucial example of how genius and disability can, and do coexist. Both need to be instructed. I wish I could attribute a methodology which has always stuck with me: We need to teach to the strength and remediate the weakness. After all, what is so horrible about having a good memory, attention to detail, and being obsessed with music? I love the way Page writes. He is competent, inspirational, honest and practical. The fact that he shares some nitty gritty detail gives me hope for Reid.
"Were other “geniuses” so oblivious that they couldn’t easily tell right from left and idly wet their pants into adolescence? What accounted for my rages and frustrations, for the imperious contempt I showed to people who were in a position to do me harm?"
In the radio interview he recalls how he "flunked and flunked for many years" all while educating himself on subjects that interested him. He made an independent study of etiquette and was relieved to learn the intellectual reasons behind our countless social customs. I can't help notice how often he uses the word "explain." Nightly, at tuck in time Reid says to me (even calls me back into his room if he forgets), "Mom, explain about tomorrow." It helps him so much to know what's on the agenda in advance. The word "explain" haunts me a bit. A simple request that makes a world of difference in compliance, comprehension, and trust.
I was going to say, "Tim, we want a biography!" but in researching this I learned he is already writing one, to be released in 2009 by Doubleday. Yay!
In the meantime, I think I'll pull out my antique copy of Emily Post to read with Reid tonight.
Certainly, Gerald deserves his own post. In fact, he is more appropo than Tubby, as you will soon see. Gerald is a toddler with no words. He makes only sounds like "boing boing" and "vrooom vroom." This was a problem for his parents (how well we know). His dad freaks out, then calls a pompous and fruitless specialist. Gerald survives ridicule in the social jungle of recess. The parents endure pessimistic prophecies from the school district. In the end, he falls into a niche and becomes the very best radio sound effects announcer that ever lived. Doing what he was born to do, Gerald (and his parents) enjoy thunderous applause, adoring fans, and public acceptance. I do love a happy ending.
Yesterday's Trombone Player Wanted film series reminded me of Tubby the Tuba, a favorite in our family archives. (I mean that black hole we call a garage.) Tubby is an animated tuba who comes to life in a song, book, musical score, and short film conceived during World War II by Paul Tripp. It has been performed by Carol Channing, Danny Kaye, Dick Van Dyke and others. I see it discarded in library basement book cellars but orchestras still perform it for family concerts. I can't figure out why it remains so obscure. To me, and fortunately my kids, Tubby rocks! He even has his own website.
After hearing it so many times, Reid does an uncanny impersonation of Carol Channing's peculiar voice. Whether consciously or subconsciously, something about Tubby resonated with him even at age 3. Of course, he responds to all things musical. I wonder whether he picked up on the underdog theme or the empowerment of embracing how God made you. Reid has developed into such an adroit critic of music and literature, that now we take his preferences seriously, as endorsements of quality. I love multi-dimensional resources like Tubby which instruct on so many different levels all at once: social skills, self-esteem, character building, and music education in a format that clicks even with young and language-impaired listeners.
You want the Cliffs Notes? Tubby is sick and tired of being a tuba. He longs to play the melody not just the oompahs from the back row. (Sound familiar?) He makes friends with Peepo the Piccolo and for a time, wishes he could sound like her (ie. play the high notes). Alas, he cannot. He is ridiculed by the rest of the orchestra, runs away, and meets a bullfrog who talks some sense into him. The wisdom of the bullfrog is that Tubby can only be Tubby and furthermore the orchestra needs him just as much as the piccolo or the french horn or the tympani. (No man is an island.)
Now, do you want to see the whole 9 minute movie?
Acceptance of our individual strengths actually honors God. Conversely, it can be a form of spiritual rebellion to wish we were different than God created us. I am much more healthy emotionally when I am content with my blue eyes, brown hair, relator strength and moderate house, than when I wish for black hair, brown eyes, a woo personality, and covet my neighbor's sporty convertible. Being content in who we are (and who our kids are) demonstrates that we trust Him. Trusting His Omniscience to know what's good, better and best is one way to worship Him.
Like Tubby, Jesus knows what it feels like to be despised, rejected, displaced, and undervalued. He also knew the value of a good story to engage and teach. His parables continue to challenge and inform for all who hear them.
He was despised and forsaken of men, A man of sorrows and acquainted with grief; And like one from whom men hide their face. He was despised , and we did not esteem Him. Isaiah 53:2-4
For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Hebrews 4:14-16
Not that I speak from want, for I have learned to be content in whatever circumstances I am. Philippians 4:10-12
Now there are varieties of gifts, but the same Spirit...If the whole body were an eye, where would the hearing be? If the whole were hearing, where would the sense of smell be? 1 Corinthians 12:17
If kids instinctively know their strengths, then our role as parents is to enhance their pursuit of them. It may save their lives either literally or figuratively (keep reading about Nathaniel Ayers). Kids with autism, and reams of paperwork outlining their deficits (otherwise known as IEP's) and obstacles stacked against them, desperately need our support to affirm and articulate their strengths. Arguably, it will cost them more than the "normal" population to be settle for mediocrity or be misguided.
In an odd coincidence, another performance at the Walt Disney Performing Arts Center is pivotal in Steve Lopez' true story, The Soloist. His arduous friendship with a destitute homeless man moves him from being marginalized to heroic. Lopez unlocks this man's potential using his obsession with music as the key. I'll show you this trailer if you promise to read the book first.
John Donne said, no man is an island. As an introvert, I sometimes prefer being alone. During stressors in my life, including Reid's diagnosis, my tendency is to pull inward, resign, recoil, resist. (Recall the funny scene in Father of the Bride with Steve Martin and the guard dogs?) That retreat only serves me so long. After a certain point, it is not beneficial to be alone. I need others to pull me out of my own quandry and keep me moving. So, it is easy to understand how Nathaniel Ayers, after his mother's death, basically lost his marbles.
When I see homeless people, I almost always think of the words of John Bradford (and my grandmother) who said, "There, but for the grace of God, go I." Knowing all the pieces that fit together for Reid to appear and behave as a functioning member of society, I can quickly imagine him (or any of us) in their shoes were the scaffolding to come down. What would it take for your life to come apart at the seams? A couple of "biggies"--loss of a job, the economy failing, death of a provider, hurricane, illness, a move--and any of us could be on the street needing a friend like Steve Lopez.
A friend loves at all times, and a brother is born for adversity. Proverbs 17:16-18
Wealth brings many friends, but a poor man's friend deserts him.Proverbs 19:3-5
A man of many companions may come to ruin, but there is a friend who sticks closer than a brother. Proverbs 18:23-24
The LORD would speak to Moses face to face, as a man speaks with his friend. Then Moses would return to the camp... Exodus 33:10-12
Josh Muggleton, a young man with autism, is sharing his college experience at St. Andrews in the UK online here at Yeardot. The book Aquamarine Blue 5 edited by Dawn Prince Hughes includes personal stories of many college students with autism. My hat is off to these trailblazing writers who will change the future on two levels. First, with their courage to do something relatively unprecedented and second, with their willingness to be vulnerable and document it for the benefit of those who follow.
Have you ever thought where we would be without the Bible? Those who wrote it had free will like us, and could either have followed God's call or chosen their own. Fortunately for all who came after, they chose to document the life of Christ and the experiences of His chosen people in the Old Testament and the unending mercy of God our Father. They did this all without Microsoft or Apple, internet or telegraph! Painstakingly and unmistakably, they shaped the experience of all of history. Now we are accountable to what has been written.
They raised the bar.
All Scripture is inspired by God and profitable for teaching, for reproof, for correction, for training in righteousness... 2 Timothy 3:15-17
Go now, write it on a tablet for them, inscribe it on a scroll, that for the days to come it may be an everlasting witness. Isaiah 30:7-9
Tell it to your children, and let your children tell it to their children, and their children to the next generation. Joel 1:2-4
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:10-12 photo credit: www.bouquetproductions.com, http://cims.hispanictips.com/uploads/2008/06/college.jpg
ipod true love iphone motivation imust learn self control
Even Allie, of course Allie, who is the golden retriever in our family (according to John Trent and Gary Smalley's analysis of personality types in The Treasure Tree), felt bad for Reid who was close to tears watching the 3 of us--the entire rest of his family except the dog--load apps from the app store, phone numbers in the contacts, and snap photos with our new iphones last week. (Ok, last month.)
"He's so sad," she whined as we went to bed guilty and gloating over our new state-of-the-art functional toys. Reid went to bed with the gorgeous Apple packaging in which the phone had arrived. The boy version of a Tiffany's box, I suppose. With the embossed lid and superreal, actual size phone pictured on it, I thought it was a good consolation prize.
Let me explain how we become so well-endowed with Apple products. Jim's office switched over so he got his iphone as a business expense. Allie is enamored with all things cool--being 14--so saved her money to pay the for half the cost. We figured we would cover the usual and customary cell phone cost and she could earn the cool factor. I am not as cool. What I am, is clumsy. While riding bikes home from our pool, I took a spill onto concrete at dusk and my modest, little, former phone broke in half. So, you see, in order to reduce our carbon footprint and save gas money, Jim just picked up a third one for me while he was at the Apple store. (music maestro: Three is a magic number, yes it is...)
As a second disclaimer, let me defend our apparent cruelty in denying Reid one. I definitely feel like One Mean Mother as Melody at Slurping Life describes.
Reid has a little issue called impulse control. In the recent past, he has thrown more than one ipod across the room in a fit of rage shattering them on our non-porous slate floor. He has run ipods under the faucet to clean them. He has peeled them apart like deconstructivist artwork. Therefore, we are calmly and intentionally using this as a (hopefully) highly motivating life lesson that you must 1) take care of property and 2) earn the responsibility of having nice and nicer things. Isn't an iphone nicer than an ipod?
So, you can pray for Reid. It is hard work for him to control his impulses. The spirit is willing but the flesh (and brain chemistry) is weak. When Carla moved back to Canada she left her AT&T phone with us, thoughtfully suggesting that we could let Reid have it. "If you take care of Carla's phone then we'll talk..." I reasoned. "If you take care of the library CD's (and don't peel off the annoying stickers that cover the liner notes) then we can talk..." On and on it goes.
Boy, do we ride a fine line between raising the bar and asking too much. As I was explaining it to him, he was chewing the antenna off of Carla's phone. I wonder how much of the compulsive, impulsive, destructive behavior can he control? And how much will we have to accept as a reality to be managed, damage controlled, and run interference around? These are the rhetorical questions which confound our parenting beyond the norm.
This past summer before our arrival at a rental house in the Outer Banks, I inquired of the rental agent, "Could you remove all the videos and DVD's before we arrive?" No, was the short answer. I pressed a bit by explaining our family dynamic. She offered, "Why don't you just put them in a closet when you get there?" I thought, "WHY DON'T I JUST PUT THEM IN A CLOSET???!!! Are you kidding me?!!???!?! If it were that easy, lady, why would I be calling you?!? Do you honestly think I'm that stupid?!??! and he's that easily duped?!?!?!? This is a kid who MUST have videos. For cryin' outloud, he can smell electronics in the house next door. He sniffs 'em out of any garage, supermarket, lock box, or car trunk. This is not a run of the mill toddler; this is a 14 year old, intelligent, manipulative, adolescent, young man with an obsession!" "Thanks anyway," I said. We'll manage.
A fool gives full vent to his anger, but a wise man keeps himself under control. Proverbs 29:10-12
No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it. Hebrews 12:10-12
To one he gave five talents of money, to another two talents, and to another one talent, each according to his ability. Then he went on his journey. Matthew 25:14-16 photo credit: www.dannyfoo.com, www.pushpullbar.com/ forums/attachment.php?att..
Have you seen Walter and Christopher Marino in the news by now? This unbelievable story of a father and son drifting out to sea for some 12 hours and surviving to tell about it brings many things to mind for me: Reid's love of water; the therapeutic value of water; the false sensation of comfort that floating offers; the benefits of knowing what motivates your kids; the power of staying engaged with them through thick and thin; the absolute might of the ocean; the uncertainty of life; the redeeming value of movie scripts; the universal will to live; and of course above all, God's sovereignty.
It to me seems that our kids have swarms of guardian angels hovering around them. I know Reid has darted through some gnarly encounters unscathed. Thus far, the Lord has honored my regular prayer that Reid would have a hedge of protection around him. Since they were babies, both my kids have had a small, plaster angel cherub hanging over their bedroom door from a ribbon. On the ribbon is handwritten the "911" code verse, "For He will command his angels concerning you to guard you in all your ways." Psalm 91:11
Enough harrowing experiences have brought me coronary distress, that people now quizzically wonder how I appear so calm. "Practice," I say without eye contact, for I have not the luxury. My eyes are always on the make for my flitting butterfly who has not yet been stung by near misses either crossing a street or riding a bike( in the center lane up to our pool in stubborn refusal to ride single file along the curb). Lost at Target; lost in the neighborhood; lost in the local county park; lost at the Tate Museum in London, Reid is found every time but, not always in short order. My knee jerk reaction now is to pray and to enlist Allie. She or I always find him. Even when we alert the authorities, it is usually her sixth sense that reveals his mystery location. And usually there is a logical explanation which we decipher after the fact when my blood pressure returns to its normal low. The most frightening situation to date was this summer in Cape Hatteras when Reid opened a moving car door and bolted across Hwy 12, an infamous single lane freeway, in an irrational tirade. How he did not get creamed into the concrete I will never be able to explain outside of God's grace.
Watching the Marino family interviewed brings tears to my eyes, tears of recognition and empathy for the complexity of their emotions and their daily reality. Siblings rock. Good for his sister, Angela, for knowing when to call the earthly 911. Good for the insightful anchorman for crediting her and using people-first language addressing Christopher by name.
Living near the ocean makes me acutely aware of its beauty and its danger. The ocean is so like its Creator. I love the ocean. And I fear the ocean. I am in awe of the ocean. Those are concrete realities. In a similar way, I love and "fear of the Lord." Just this past summer, I was momentarily caught in a riptide and surprised by how quickly I panicked. A week later, an avid boogie boarding friend of mine had to be rescued by a lifeguard in front of her 2 teenage daughters. In addition to being embarrassed, she was really frightened. Afterward, we commiserated over all that flashes before your eyes in a moment "at sea." I cannot begin to imagine the hours at sea that the Marino's endured.
I am also touched by the dad's flood of gratitude. Do we express equivalent joy and exuberance on Easter morning (or daily, for that matter) at the promise of being rescued from eternal death? One day we will know exactly how he felt. Jesus, not the Coast Guard, saves us all from the clutch of death.
That if you confess with your mouth, "Jesus is Lord," and believe in your heart that God raised him from the dead, you will be saved.Romans 10:8-10
"Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name. Psalm 91:13-15
Reach down your hand from on high; deliver me and rescue me from the mighty waters, from the hands of foreigners. Psalm 144:6-8
From six calamities he will rescue you; in seven no harm will befall you. Job 5:19
The angel of the LORD encamps around those who fear him, and he delivers them. Psalm 34:6-8 photo credit: www.scienceimage.csiro.au/mediarelease/images/open_sea_sm.jpg, wwwcache.wral.com
Kristina Chew at Autism Vox shares several poems by author and autism mom, Barbara Crooker. One of her most recent poems in the book Line Dance, entitled Simile, reminds me of one of Reid's all time favorite board books, Quick as a Cricket. It is one of a scant hundred we are scheming to present to Little Guy Wood, Carla's baby boy arriving in December. The catch is, Reid still loves them so much he absconds with the new copies as fast as I can hide or wrap them. He is futiley trying to convince me to give his ripped, stained, and cherished original copies to the baby, who "can't read yet anyway." He's got a point. There are worse obsessions! Anyway, Audrey Wood's classic was one we used to build an emotional vocabulary of adjectives when Reid was younger. He still fancies the metaphors and visual imagery that depict moods including, "shy as a snail," "large as a whale," and "tame as a poodle." Have you seen the PowerPoint image Temple Grandin uses to convey her childhood sensory experience with toilet paper? Scratchy as sandpaper. I couldn't find it online but here is a similar representation. Similes are quite effective. Barbara Crooker's son coined the phrase, "mad as a tea kettle" which is vividly descriptive despite his teacher's redlining it.
Simile My son showed me his paper from remedial English; he was supposed to fill in the blanks. Cool as a __________. Smooth as a __________. Neat as a _____.
He came up with: angry as a teakettle and when I asked, “Why?” said, “Because it was boiling mad.” Of course, it was marked wrong, one more red mark in his life’s long test.
When I called from Virginia to ask him what he did last weekend, he said, “We bought Italian salad dressing.”
Last fall we went to a Broadway play; what he liked the most were traffic lights and Don’t Walk signs.
Of, my little pork chop, my sweet potato, my tender tot. You have made me pay attention to the world’s smallest minutia. My pea-shapedheart, red as a stop sign, fills with the helium of tenderness, thinks it might burst.
God's Word is full of similes. Spiritual concepts are the hardest ones for us to grasp whether we are autistic or neuro-typical or gifted. Scripture comes the closest to conveying the abstractions of God, His heaven, and His immense love for us since it is, in itself, God-breathed through the Holy Spirit exclusively for our limited, finite, and human understanding. The Lord has done His part by putting it into our language and our individual learning style with factual accounts, visuals, parables, timelines, and even poetry.
Let my teaching fall like rain and my words descend like dew, like showers on new grass, like abundant rain on tender plants. Deuteronomy 32:1-3
Man is like a breath; his days are like a fleeting shadow. Psalm 144:3-5
For a thousand years in your sight are like a day that has just gone by, or like a watch in the night. Psalm 90:3-5
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 photo credit: 5x6csa.com
I like the thoughtfulness of this article by a teacher noticing her own lifelong penchant for the underdog. I often wonder (and usually inquire) what draws people to the field of special education. Although it is my passion now, I never would have predicted it would become so central in our lives before learning that it affected us personally. One of the first questions I have always asked professionals who work with Reid is, "what led you to this kind of work?" Partly, I am vetting their motives. Their response also reveals to me how they perceive their work. Is it education or mere respite care? What expectations do they have of themselves and of Reid to progress? Also, I am just curious what makes them tick.
Often, our very favorite professionals have had a sibling with special needs or some personal relationship that motivated them to enter the field. Their desire, skill, training, competence and compassion were born out of inclusion and a personal connection.
Hiring (and keeping) tutors can be difficult. Reid has always been a "challenging case" with his potent combination of smarts and behavior. He tests everyone who has ever tried to play or work with him. This served to increase the turn over rate at our place during the home program heyday. He still has a way of demanding the best of everyone around him as well as revealing their weaknesses. For the willing, he provided a rigorous continuing ed course. He could dish out every avoidance tactic, maladaptive behavior, and sensory issue in the book in one quick 50 minute clinical hour. I am grateful to be looking back on those days.
I would lay awake at night wondering, "What makes some people better at this than others?" (And how will I find more of them?) We had an eclectic program wanting to incorporate ample amounts of Floortime with the obligatory ABA. Following a prescribed teacher/student script of discrete trial drills can be taught relatively easily to anyone. Engaging in child-centered play as Dr. Stanley Greenspan advocated was another matter. It had to be caught. I struggled with Serena Weider coaching me to undo much of what my parenting model had been. My husband, who is far less inhibited and more playful to begin with, was more natural at it.
Three standouts in our own personal autism intervention history were Danielle, Carla, and Michelle. (I hate leaving out Ben and Angela and Becky but, they came along later.) So, can you tell already that I liked people who were willing to become family and blur the boundaries of professionalism in our best interest?!@# I refer to 'the good old days" of early intervention when our team included that triad who met weekly in my living room until Jim rolled home for dinner. I never felt alone. We had each other and plenty of ideas to put into motion. They had energy and we had money! Clearly, people motivated by challenge were ideal. Reid was not a sit-in-the-chair and parrot back trials kinda kid. As one educational therapist said of him, "He is a mover and a shaker who needs someone who can move through life with him." I liked her.
Carla came into our lives through the dreaded school district. Despite that entree, she and I connected immediately with a sister-like chemistry. I will never forget her first session with Reid. It was basically love at first sight for him as a preschooler to have this young, fun bubbly woman woo him into turn-taking, playing "guys" and singing songs together. Since we both have curly hair, I used to joke that maybe it was the curly hair gene that was the magic touch we sought when interviewing tutors. Could it be the years of managing unruly curls that pre-qualified us for excellence in autism intervention? (I obviously think highly of my own contribution to the team, don't I?) Being curly girls made us flexible, open to the idiosyncratic, able to appreciate the beauty of going around and around in circles in Floortime play therapy. We found the beauty in it, not the frustration. I loved to hear Carla tell my son, "I love the way your mind works." But alas, there is more too it than the dominant curly gene. After all, Danielle had straight hair and she was a (little-s) savior to us. Now with the benefit of Strengthsfinder, I see that I was probably seeking out others with the Achiever theme that Jim and I share and brought to parenting. Carla's Communicator and Activator themes were well suited too. Did you know Woo is actually a Strengthsfinder theme? Of course, she has that one too. Whew who!! Empathy is another theme to seek out when hiring especially for non-verbal kiddos. Imagine how helpful it is to spend time with someone who knows how you feel before you do and can prompt you with a handy English phrase?
In addition to Reid's maneuvering, our attrition was due to the eligibility of the crew. In short order, they all seemed to run off to pursue doctorates, marriage, or babies. Such is life...it gave Reid invaluable practice in the less popular social greeting: goodbye.
Reid's current case manager, the nicest guy you could imagine from the midwest, had just finished the military when his wife asked him, "If you could do anything in the world what would it be?" He replied, "teach." Good for him. Good for us. I have less time with him as they are outside my house now, so I continue to ponder what seeds were planted in his life that grew into the tireless, hopeful, consistent teacher Reid enjoys this year.
Here is one more article about a teacher who switched from regular ed to special ed based on her attachment and "falling in love" with one student. It happens all the time, see Kiara Brinkman the teacher who wrote Up High In the Trees and You're Gonna Love this Kid by Paula Kluth. Maybe the common denominator in extraordinary teachers is their genuine appreciation of each unique soul God has created as individual and different from the next as each seashell, each star, and each snowflake.
"He determines the number of the stars and calls them each by name." Psalm 147:3-5
"And in the church God has appointed...teachers, then workers of miracles, also those having gifts of healing, those able to help others..." 1 Corinthians 12:27-29
Then I heard the voice of the Lord saying, "Whom shall I send? And who will go for us?" And I said, "Here am I. Send me!" Isaiah 6:7-9 photo credit:www.movieweb.com
When every song on my ipod, every artist I select, every sermon outline fill-in-the-blank, every instruction I am given (even my kids' devotionals) compel me with another idea to post, it must be a sign. Get back to blogging!
The summer was long. My daughter switched to a new high school giving her 3 full months and an overdose of vacation and staycation. We had a trip to the east coast that afforded great family memories afterward but, in the moment was stress-filled requiring a double dose of attitude adjustment. Reid had the month of August off with no school routine to keep us plugged in. Need I say more? Whether or not you noticed, I have unknowingly kicked the habit of daily posting.
I'm back in the saddle though, as of now! I've been stashing notes in a book stand on my kitchen counter. It is jammed with experiences to process from the summer each on their own little slip of paper or in the margin of a church program. It is motivating to think I will not run out of material but rather have a storehouse of observations to unload. In her book, Writing to Change the World, which I absolutely love (I don't think there is a page I have NOT dogeared), Mary Pipher encourages writers to go ahead and say it, "I'm a writer." Often, we are the ones with the introverted temperament who procrastinate and need a push to take the little leap of faith to dive in and commit to that as a professional title. That is me.
The longer I avoid writing, the more slips of paper accumulate. What's even more annoying, more and more mundane events beckon me back to the keyboard. Listening to instrumental music walking the dog, I can't help myself from composing illustrations about life and autism. Metaphors are cutting me off in traffic on the freeway of my mind. At my piano lesson, my substitute teacher (not even Angela) explained how I might improve my phrasing on Ecossaise in C by Beethoven. Without realizing it, her words were a metaphor for my month with Reid at home 24/7. I give him instructions in pianissimo then repeat them in a crescendo with only slight variation again until it is forte. Then I back off in resignation before the D.C. al fine as if to replay the request. I didn't have to think too long to implement her suggestion that I envision a storyline while I play. It all comes back to autism. My life has become a spiritual journey through (not to) autism. You may think, autism, schmatism. (That's another great blog name that's been taken.) I say, it's all good!
What do all your roads lead to? A new house...an obvious mate...the decision to adopt...persistent nudges to a certain project....to say "no" to something...
Could this be one of the ways God speaks to us? Like the insistent prayer of the widow in Luke 18, maybe His Holy Spirit is modeling prayer for us prodding and poking, divinely texting and twittering us with reminders to complete the plans he has for us.
"For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' " Luke 18:4-5
Autism is everywhere isn't it? I almost feel trendy having it in our family. McCain's talking about it; Obama's talking about it; Hilary's talked about it; it's been on the cover of every major news magazine more than once. Perhaps we have Autism Speaks to thank for that. NPR has a score of radio shows on the topic. Just in the This I Believe syndicate show there are 19 essays that relate to autism. I am working my way through them all. And who can even count the number of autism bloggers of every color and creed?
This was not always so. When Reid was first diagnosed (1997) I called Focus on the Family, the revered support organization for Christian families. One of the most isolating moments in our journey was their lack of awareness and total dearth of resources on autism. They have since added one book by Lynn Hamilton...albeit with a disclaimer. Eleven years ago the enemy used it to make me feel as though Christian families don't experience disability which is totally false! In fact, this blog is a culminating result of that alienation and my attempt to make better (and not be bitter) the Christian community's response to what God has allowed in our life. We need help from within to address the needs of families with autism who are attempting to apply Scripture and Biblical principles to the particular life trial that autism can be. Just as much as politics, sex, and the environment, autism should not silence the church.
"I ask you to receive her in the Lord in a way worthy of the saints and to give her any help she may need from you..." Romans 16:1-3
"...though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed." 1 Peter 1:5-7
“Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” Isaiah 46:4