Ok, this clip from Father of the Bride is more than just hilarious. I'm searching for it as I work on a book proposal recounting our April 2010 to April 2011 adventure as it relates to and requires a number of re-words. "Re: Re: RE: REID!" is my working title.
I needed to recall Steve Martin's choice list as he flounders to control the attack dogs:
Relent?
Recoil...
"I'm Relaxed..."
Reverse*
Release!
Much more on that later, but I happened upon something easier to tell in one sitting. You hear Steve Martin's self talk? As in numerous comedies, it is made audible in the movie for laughs.
"All I could think about was the size of this place...we coulda parked our whole house in the foyer..."
I live this brand of comedy daily. Reid lets us know exactly what he is thinking with an increasing amount of self-talk both at home and school. On the surface it is just one more "maladaptive" behavior to reckon with and raise concern. Looking deeper, the self-talk is actually worth much more than a few laughs.
Reid's externalized thought process literally reveals his motivations, where he's stuck, what challenge he's facing, and how hard he is attempting to do the right thing. It's a gift of revelation. A helpful tool in showing us how to set his potential free.
By talking to ourselves (albeit silently), don't we all process what is happening around us. We might encourage ourselves or beat ourselves up. Surely we prep up for the day's challenge over the coffee pot or in the closet choosing what to wear. Listen to yourself and take note of how much dialogue you have with yourself.
As I realize this, I am actually grateful that Reid's thoughts are as pure as they are. He sounds an awful lot like Paul in Romans ruminating over the battle between our old and new natures:
I do not understand what I do. For what I want to do I do not do, but what I hate I do.
And if I do what I do not want to do, I agree that the law is good. As it is, it is no longer I myself who do it, but it is sin living in me. For I know that good itself does not dwell in me, that is, in my sinful nature.
For I have the desire to do what is good, but I cannot carry it out. For I do not do the good I want to do, but the evil I do not want to do—this I keep on doing. Now if I do what I do not want to do, it is no longer I who do it, but it is sin living in me that does it.
So I find this law at work: Although I want to do good, evil is right there with me. For in my inner being I delight in God’s law; but I see another law at work in me, waging war against the law of my mind and making me a prisoner of the law of sin at work within me.
What a wretched man I am! Who will rescue me from this body that is subject to death? Thanks be to God, who delivers me through Jesus Christ our Lord! Romans 7:15-20
Mom (from bottom of stairs in a sing song voice):"Good morning, good morning, good morning; it's time to wake up; it's the last day of school before break; it's your day to swim at the Plunge; it's time for breakfast so you don't miss the bus..."
Reid (from upstairs on his feet, entering bathroom): "Stop singing Mom."
The good news: Music motivates. He got up.
The bad news: I do not have a hit single on my hands.
Who doesn't have vocabulary development on their IEP? Like greetings, increasing vocabulary has been one of Reid's goals for more than a decade. Lately though, his gains in other areas make this one simmer to the top like grease on the top of the turkey soup--ready to be skimmed off.
With new vigor I am explaining idioms and narrating each drive in the car as if I were a thesaurus on audible.com. I have a Word-a-Day tear off calendar in mind for under the tree. (Shhhh...) Grateful for good training from so many speech and language pathologists, we are "emphasizing new words in conversation and generalizing them to various settings. This becomes habitual after years of practice, but we can all use a refresher right?
Several times lately, Reid has asked me, "what does ____ mean?" This is quite an exciting developmental milestone at any age. Last week, Jim was out of town for a night, which was occasion enough for Allie and I to watch Sleepless in Seattle. Catching wind of this plan in one of those running monologue car rides, Reid inquired, "what's a chick flick?" I gave what I thought was an adequate explanation. That is now debatable.
At our house, Reid customarily "does the controls," meaning he holds the remote, cues up the DVD's, introduces the film, and adjusts the volume. Electronics are totally his department. Even if he walks out in the middle of a film, when those credits roll boy, he never fails to bolt back down. With a flourish he insists he must "do the honors," eject the disk, and close up shop. So it was tonight, after a peaceful Thanksgiving day, that he rejoined us for the summation of the movie Elf. As he turned the power off he delivered the punch line under his breath, "That was a good chick flick."
Jim and I chuckled in cahoots later...a chick flick...compared to what? Bourne Supremacy or Barney? We'll keep working on that goal....progress noted.
Need a summer movie rental (for mature audience)? As It Is In Heaven, a Swedish film nominated for Best Foreign Film Hollywood Awards available from Netflix, is incredibly thought provoking. It is a compelling story about how to really love your neighbors. It is also a testament to the power of music to transform a entire community. And how can you speak about love without inclusion!
Tore is a young man experiencing developmental disability in the film. Some in the community call him a "cuckoo" others accept, comfort, shepherd, even learn from him. The filmmakers realistically depict the interdependence model Kathie Snow extrapolates here in her Disability Is Natural newsletter. As God would have it here on earth, Tore is not the only one with special needs who needs a little help now and then.
Despite his innocence, he is wise to tension often sensing what others miss or ignore. This closing scene is meant to intrigue not to spoil. (If you want the preview instead click here.) As the town choir takes the stage at a choral competition without their conductor, Tore takes an unplanned leadership role. The result weaves together several threads of the movie.
Life is not about being able. It is not about achievement. It is not about winning. Redemption is messy and beautiful. It requires vulnerability and courage. In some measure, both require finding your own voice and joining a chorus of others.
God has a will and a purpose in each of our lives. The conductor in the movie states his calling early in life: to open people's hearts with music. A tutor of Reid's asked me recently, "What is yours?" I hemmed and hawed awkwardly, having just met her after all. "Go ahead," she urged, "there's no one listening, just you and me, what is it?"
She was unrelenting as I stuttered in embarrassment and false pride. I choked out what was pounding in my chest but had never been articulated: to convince people that there is always hope. I was grateful for her insistence last night as Reid and I lounged in the hot tub. Out of the blue he blurted, "Mom, what's your destiny?" I had an answer!
When I turned the question on him he shot back, "to sing."
What's yours?
This, then, is how you should pray:
"Our Father in heaven, hallowed be your name,
your kingdom come, your will be done
on earth as it is in heaven.
Give us today our daily bread.
Forgive us our debts, as we also have forgiven our debtors.
And lead us not into temptation, but deliver us from the evil one.
For if you forgive men when they sin against you,
your heavenly Father will also forgive you.
But if you do not forgive men their sins,
your Father will not forgive your sins." Matthew 6
Ahhhhhh........the sigh of relief that comes when you know your child is in competent hands. The shoulders drop and regular breathing resumes. I just carried a tutor's bags and boxes upstairs and came back down to hear their joyful laughter and productive movement through the ceiling. The assurance that for 2 hours, you can safely invest in some uninterrupted personal time is as much the value of the therapist as the therapy itself. The question is whether to zero in on Bible study homework, pay some bills, savor a cappuccino, or start dinner....hmmmm, what will it be?
So many caring and gifted teachers, aides, and therapists have blessed us over the years. With remarkable optimism, skill, and stamina they have deposited buckets and buckets of energy into Reid. An osteopath found it palpable once in an exam, "I can tell he's had some good work." Once upon a time, I took pictures of each hire and laminated them on PECS cards so Reid could learn their names and keep track of his weekly calendar. It's incomplete but here are a few I found. God BLESS them everyone...the saints of God...
April 4
Teachers,Aides, and Therapists
"But as for you, be strong and do not give up, for your work will be rewarded." (2 Chronicles 15:7, NIV)
"Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain." (1 Corinthians 15:58, NIV)
Pray that those who teach and provide therapy will feel successful and rewarded by the Lord for their efforts.
The centipede Kathryn found in her bed brought this vintage song to mind. A favorite blast from the past, The Inchworm song by Frank Loesser takes me right back to the golden homeschool days of snuggling with my babies on the sofa in our jammies reading Five in a Row classics. Science took us to the duck pond and math meant baking cookies.
Watching it now, underscores the diametrically opposed styles of the two teachers. I feel this tension every time I step foot in Reid's current school, tour an alternate placement, or interview tutors. Even as I navigate daily situations, I face the internal dilemma of prioritizing "instructional control" or following his lead.
Reid's days are spent in a sugar-coated behavior mod hell. But hey, it's scientifically based and proven effective!* Through consistent, direct instruction and follow through they have, in fact, helped Reid establish good student skills and extinguish several maladaptive behaviors. I fear however, that his success there dictates a future in some equally rigid, highly staffed environment, which is not what I envision.
In contrast, this very moment as I peck away, Reid is directing the show with a woman who would fly a kite with Danny Kaye all long as the day was long letting shoes pile up at the cobbler shop. With her, his spirit soars higher than the scarves they are tossing in the air. He chats a blue streak, dances a bi-lateral jig, and otherwise fills our home with unbridled joy. There is cooperation, mutual respect, emotion, and creative output in the form of drawing, singing and art.
Which do you prefer: the pinch-nosed marm reciting times tables behind the shutters or Danny Kaye inspecting inchworms after weaving yarns down on the river bank?
Who would you learn more from? What about your child?
Or do we need some of both? That is my quandry this month friends....
Did I tell you about the NYU film student, Michelle Delateur, who found The Kingsmen on Myspace? I think not...so behind. In any case, she came, she filmed, she edited...and Rockism, the documentary featuring Reid's band, is ready.
The screening will be January 29th at 11:00am on the NYU campus with Christiane Amanpour, CNN correspondent, as the guest speaker. I can't get there but maybe you can.
Reid's the one on the trampoline at the very beginning. That's my boy!
I've mentioned that it's been a rough week. It's still raw, but if I wait to summarize it will lack the true grit that I highly esteem.
We're crawling out from under a train wreck of hormones, medication changes, and burgeoning angst. It came to a head last Monday afternoon; Day 8 of what we will now call "the wrong medicine" blew up in all of our faces. Poor Reid landed off the bus in a sobbing pile on our living room loveseat. My heart broke as all he could choke out was, "mommy...i missed the bus...."
That was only the start of the terrible, horrible, no good very bad day. I could tell the whole eight hours must have been coursing through his mind. What just happened?...How did i get here?...What have I done?...I am so glad to be home... I can't do this anymore...all coming out in rare tears from this indefatiguable, exuberant boy with stamina, courage and joy that knows know bounds. He couldn't win over the chemical warfare in his already out of sync body.
I knew most of what had transpired, thanks to a call from school--uncharacteristic aggression, a restraint, a frustrated bus aide yelling reprimands in a German accent--but of course I wasn't there. Push had come to shove at a school where they don't dance around lines in the sand once they're drawn. I'd only witnessed the beginning at 7:07 that morning:
A substitute driver stuck strictly to his time chart and drove away from our open garage door. In my pajamas and Kat's Beetle (mine in the shop), we chased him down to the next pick up in Del Mar. I can't say for sure if he saw my frizzy bedhead as I stood waving frantically in my bright orange paisley flannel bottoms, no bra and a t-shirt, but I felt hard to miss. He drove off AGAIN as Reid zipped up his backpack with one foot on the running board.
Appalled, I joked through the surging adrenaline, "OMG! I can't believe this guy. The nerve. HA! We are gonna catch that bus!" In good spirits taking it in stride, Reid said, "Mom at Austin's house I am going to get out the fast way! My backpack is ready. I'm right on target." At the off ramp of the 56 in Carmel Valley now (still closer than driving to school which is 30 minutes away), I pulled up next to the bus and motioned in an angry charade that he better wait this time. The guy was close to comatose which gave me that sickening feeling of negligence that I even put my kid in his charge. How did we get here?
Back in the brokenhearted moment I cried with Reid, "Oh baby, it's not our fault. It's the wrong medicine. We know that now. I am SO sorry. No more of it. You can stay home tomorrow. We will figure this out." I am so sorry, so very sorry. How can I make it right. The tears are still right here. How can I spare him this? Confusion. Remorse. Out of control. Haywire.
By 4:30 as I glanced out the back window from my piano lesson to see him throwing sand at the hedge, it seemed like improvement. A minor offense at this point and maybe an effective way to vent the stress of the day. I called to him as usual, "your turn with Angela now, Reid."
No reply. Did I see him come in? Check upstairs. Oscar's can? One more loop. "Jim, Reid's gone." In quick reply, all five of us--Kat, Allie, and Angela in heels, fanned out calling "Reid, say 'here i am' Reeeid!
Allie and Kat to the neighbors who have Apple TV. Not there.
Jim up the street on a bike to ones who own Sound of Music.
Finally over the back fence we heard him answer my plea, "here i am" A second reply several minutes later enabled Jim to zero in on him in the cul de sac
below our back enbankment.
Long story short, we urged his distraught body home having averted any trespassing violation. He was crying again in his lower bunk, aware that dad was angry. Now poor Angela, the music therapist cum piano teacher cum friend of the family cum fellow sojourner in the way, would have to pick up the pieces and salvage the remainder of their session. (Had she been a stickler for time, it would have been over.)
She had already earned her keep with Allie in the foyer empathizing over sibling memories of her brother with Angelman syndrome. She has been there! And is there for each of us in unique ways. She's comfortable enough in our house and was going to have better luck at this point than any of us. So, without words, she went into his room to work her therapeutic magic. The rest of us just listened and learned through the walls.
"Reid, Kingsmen is tonight. the band needs you. you're such an important part of the band. we need to practice that new song. do you think i could sing you part of it to you?" She began to sing the Beatles song they're preparing, leaving out key words which he filled in. Then suggesting that maybe it would sound better with the piano downstairs, they rallied to the bench. Order restored for the time being.
Crouched in the living room praying in a private language for peace, wisdom, some end to this... I realized they'd switched gears and were singing Sara Groves' "He's Always Been Faithful."
He has always been faithful. As I tuned in, I realized we were both getting the therapy. Angela has an intuitive way of picking songs that scratch the itch and allow the Spirit to move through the music without agenda but with definite purpose.
Last week, she'd blessed me in a different way with a VIP ticket to the American Music Therapy Association conference. It was a thrill to be close enough to touch Nathaniel Anthony Ayers, The Soloist, hear him perform, and meet his sister the next morning. Steve Lopez spoke on the panel also (more to come on this experience). He recapped Mr. Ayer's progress since the time that the book and movie came out saying that he is still not on any medicine that would fix it or clear it all away. Lopez has learned to think in terms of recovery rather than cure. Recovery defined as learning about the condition and functioning with purpose.
Then the profound clincher that compelled me to borrow a pencil from my neighbor, "I like to think that the music is the medicine. The Walt Disney Hall is the hospital. And the musicians are the doctors."
Amen brother! That has been my experience too.
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 1We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 2 Corinthians 4:8-10
May God himself, the God of peace, sanctify you through and through. The one who calls you is faithful and he will do it. Brothers, pray for us. 1 Thessalonians 5:23-25
Whenever the spirit from God came upon Saul, David would take his harp and play. Then relief would come to Saul; he would feel better, and the evil spirit would leave him. 1 Samuel 16:22-23
My favorite-movie-of-all-time is Lost in America. Albert Brooks' cracks me up as he whines, "I can't believe it, I've lost a whole woman. How can that be?" After a fight, his wife has hitched a ride with a redneck stranger to get away from the Hoover Dam and him. ARRGHH!!!! come his non-verbal groans of exasperation and helplessness. What to do now?!??! I know the feeling.
I could, but won't, make a recurrent series of Lost and Found Reid stories, for it happens woefully often. It is not something I'm proud of but, it is emotionally trying enough that retelling seems to be a coping mechanism. Will you oblige me?
Every time it happens, that Albert Brooks line runs through my mind. "I've lost a whole child!" It helps to have someone with me, someone who knows Reid, someone who knows I'm actually ultra-responsible. Just like the sister in Ian's Walk by Laurie Lears, Allie knows how he thinks. She accurately claims to have a sixth sense about where he will be.
I generally don't involve security right away because 9 times out of 10, we're the ones who find him anyway. He returns to where we last saw him like a little doggie wagging his tail behind. Pulling the alarm, seems to attract negative attention and be unnecessary. Strangers, no matter how well intentioned, have actually confused him in the past and set him off his logical course.
However, this time I was alone after the successful Kingsmen gig at the rambling 250,000 square foot Town and Country Hotel and Convention Center facility. Jim had left, the audience had cleared, we were putting amps away. Reid was within eye shot browsing sodas at the lunch buffet...and in the blink of an eye...argghh!...a whole child...@#$%^&!...lost.
This place is a huge maze of ranch-style bungalow cottages, two high-rise towers, courtyards, multiple pools, and at least 964 televisions. After Albert Brooks flashed through my mind, I had a vision of checking all 964 rooms with a pass key in a massive shell game to discover behind which door Reid would be happily watching PBSKids.
The usual protocol is this:
1. Pray
2. Fan out
3. Stay in the spot last seen
4. Wait
5. Enlist help (after a reasonable amount of time--15 minutes?)
In this case, I prayed the standard, "Lord, you know exactly where he is. Lead me to him I pray. And keep him safe from harm in the meantime." Called Jim to do the same. Then jumped ahead to #5 on the list. I didn't want to mess around since we were due in 30 minutes at a drama rehearsal that was 30 minutes away.
Power walking through this idyllic complex without passing go, I grabbed the first uniformed concierge I saw at Registration."I have a lost child, will you call security?" please.
No frantic first timer here, I knew the line of questioning better than she did.
"Yes, right away," as she dialed. I interjected the next piece of information, "He's 15, has autism, and is wearing a bright turquoise sh....
"Wait," something clicks in her mind, "I think I just saw him."
Praise God. Smooth way to answer prayer! Look how You led me right to this particular woman. Who needs security? You are good!
"Just a minute," as she hung up the phone. "I thought that was weird," she was thinking outloud. "He was just on those computers and...let me go check. I wondered why the door was open...."
Sure enough, after tracking her through a couple of keypadlocked doors, we spied him. Shoulders drop...exhale...found.
That had to be the fastest, timeliest, serendipity-est round of lost and found yet! Off we went to the parking structure...arm in arm, Cotillion style...only 5 minutes late for drama. In my mom's famous line to endorse the power of prayer, "You don't think that just happened, do you?"
Everytime, I am reminded of God's control over the details in our lives. He must certainly have extra guardian angels assigned to Reid. And His grace exceeds Reid's curiosity.
Do you have a favorite version of Amazing Grace? Like Albert Brooks and Easy Rider, "I've based my whole life on that song."
If I had a mind to brag a little, I could probably do it without looking ridiculous, and I'd still be speaking plain truth all the way. But I'll spare you.
Because of the extravagance of those revelations, and so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty!
At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it's all you need. My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness.
Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become. 2 Corinthians 12:6-8 The Message
What could be better than a true story? Two true stories, intertwined with a third.
When the movie Julie & Julia came out I puzzled over how to justify a blog about it--off topic again! Lo and behold, it's emerged.
The film had me so jazzed! I had already devoured the original source material--My Life in France and Julia and Julia, the book. Blogging author, Julie Powell, is my hero. I love food, France, writing, the ambition of both these women, and butter.
I love that by pursuing their bliss, they both arrived at national recognition. I love their bawdy gusto and sense of humor. I love that their husbands were supportive and pushed them to greatness. I love the larger-than-life humanity they both exemplify--living in Queens or mis-flipping omelettes. Most of all, like them, I love to eat!!
I love that Julia is a near amazon with feet bigger than my size 11's. I admire her obsessive attention to detail; identify with her wanderlust, self-deprecating humor, and moxie.
As a fanatic, I watched Julia's oral history on Youtube recalling her years in Paris. With exemplary pluck, she sums it all up: "I find that if people aren't interested in food, I'm not very much interested in them...they seem to lack something in the way of personality...that side...that gustatory pleasure syndrome is lacking."
What is it that separates friends from kindred spirits? It must be a shared passion. Autism is a passion and I have others: food, faith, art, writing, books. When I meet a friend who shares more than one of those it is kismet. Having a friend who shares all of them is nirvana for we can eat, talk and pray with fervor. Pursuing a special interest is important to neurotypicals and aspies alike. Thus, the musical mentorships we will offer through Banding Together.
Like a mother adjusting her own oxygen mask first in the event of an in-flight emergency, I dragged my kids with me to the opening day matinee back on August 7. Allie reminds me she was had a slight fever. Five minutes into it, Reid started squirming, "is it almost over?" to which I parroted, "here comes a good part..." Fortunately (since I was not leaving), the onion chopping scene hooked him in and he is now an avid fan also. We've rented the original French Chef episodes on WGBH from Netflix. His gustatory sense is re-invigorated as is the life skills training going on in our kitchen. I already know what he's getting me for Christmas:)
Can I just say, I love this kid! I love his impersonations, his perfect pitch, the accuracy of his dropping the lower lip. I love that he loves food. I love his lack of inhibition. I love him more than Julia Child and Julie Powell put together! He is my special interest.
Then God said, "I give you every seed-bearing plant on the face of the whole earth and every tree that has fruit with seed in it. They will be yours for food. Genesis 1:28-30
And a voice came from heaven: "You are my Son, whom I love; with you I am well pleased." Mark 1:10-12
We have examined this, and it is true. So hear it and apply it to yourself. Job 5:26-27
Some will recall my saga of perpetually lost and found library privileges. Netflix recently revoked our privileges too...or shall I say, "put our account on hold?" Stifled by the stagnation of red envelopes to our mailbox, I called to inquire "pourquoi?" The agent informed me that there is a 6 disk limit per year on "claimed lost" disks. Apparently, they were counting and we'd reached that. (This is why I don't borrow movies from friends-- far too risky.) The customer service agent on the line asked, "Do you know how this happened?" "Oh, girlfriend," I was tempted to ask her, "how long is your shift?"
Here's a lesson in awareness, now that April (and Autism Awareness Month) is over: not everyone needs to know the whole story. I opted for the "play it dumb" approach and was most thankful that she had the authority and grace to reinstate our account. We'll try harder, this time.
What really bothered me, more than their tallying our delinquency was that they didn't inform me we were out of favor. Did they figure I was counting how many disks were scratched beyond repair, returned in an open envelope only to slip into oblivion, dropped into the storm sewer or eaten by the dog? Were they going to send me a pink slip? Apparently not. As forgiving as they are (Netflix was founded when Reed Hastings got fed up with Blockbuster late fees), they do have limits. And not surprisingly, we reached them. I just wish they would have told me that my time was up! Instead they cut me off and waited for me to call and beg for reinstatement.
No one has more mercy than God the Father. Throughout time He has had mercy on wayward humanity, through the Fall, the Flood, the Cross, and one day the Rapture. Yet, certainly in His perfect justice there are also limits. Does He tell us when we've reached them? Send a pink slip in the mail? A bolt of lightning to straighten us up? Or is it up to us to log in and check our status, place a call, prostrate ourselves, return to the prayer closet, fess up?
Maybe sometimes He does announce our status to us. For me right now though, He doesn't have to. I've been counting. It's been more than 6 dyas since I had a bonafide prayer time. He knows that I know, that He knows, that I have been out of touch. The onus is on me to simply make the prayer time, prioritize the Bible study, and care to share.
Sara Groves has a great song, "How Is It Between Us?" that describes the ennui I've been feeling for the last couple weeks. My study circle concluded for summer and although we met to celebrate Purim (as the climax of Esther) and watch One Night with the King, we are "out of the Word," so to speak. That means I am out of the daily disciplines of prayer and study that change the course of my day and enlighten my outlook. God knows it; I know it; now you know it. Amazing the power of accountability and the weakness of our flesh. More amazing is the power in those habits.
He is there waiting, I know, with a fresh word if I would just open it. A new infilling if I would take time to bow. How many days does it take you to notice the stagnation of your spirit...and dial up to complain, "Where are my movies!" "Where's the fruit?"
If he sins against you seven times in a day, and seven times comes back to you and says, 'I repent,' forgive him." Luke 17:3-5
Come near to God and he will come near to you. Wash your hands, you sinners, and purify your hearts, you double-minded. James 4:7-9
"I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing. John 15:4-6
Praying with Lior, is an awesome film about the Bar Mitzvah and life ministry of a young man with Down Syndrome. His full inclusion at a Jewish day school, the importance of his community, and his charisma are powerful examples to me of God's kingdom come, God's will being done on earth.
Lior's honest candor and sense of humor warm my heart and draw me to a God in whose image He is surely made. As his Dad says, "he's not stupid; retarded, but not stupid. There's a difference." Ilana Trachtman interviews Liorhere, fielding questions about the production and their first meeting.
What a thoughful disability awareness curriculum this study guide of questions and verses from the Old Testament would be for teens coming of age in either the Old or New Testament tradition. Lior has an undeniable spiritual gift of wisdom. What strikes me anew, as it did during Reid's preparation for baptism, is how marvelous it is that the Bible is at once complex and simple. Reid, through the purity of his testimony song and Lior, through his innate preaching distill it to the fundamentals.
As much as I wrote about Reid's baptism, I do not think I ever posted the resulting video. To our immense gratitude, one of the pastors at the beach that day said, "the whole congregation must see this." He arranged for the professional recording of Reid in our family room so this slideshow was shown on New Member Sunday. The ironic twist for me was that after many years of whining and complaining for programs at church that would serve Reid, now as he comes of age, he is in fact, ministering to the church body. God turned upside down and inside out, what I thought I wanted or we deserved. A kind of ministry was born in which he was serving rather than being served.
And he stood and blessed all the assembly of Israel with a loud voice, saying... 1 Kings 8:54-56
The law of the LORD is perfect, restoring the soul; The testimony of the LORD is sure, making wise the simple. Psalm 19:6-8
...but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong, 1 Corinthians 1:26-28
Elf is a favorite movie of ours this time of year. It's not about the real reason for Christmas--which I usually prefer--but it does tap into two of my special interests: adoption and autism.
Buddy crawls into Santa's bag at an orphanage and ends up being raised by a very fatherly elf played by Bob Newhart. His dad honorably encourages when he wants to search for his birthparents in New York City...and is there for him when he returns.
I get a kick out of Buddy, the elf, who has to learn the ways of what seems like a different planet. When he arrives in New York City, he has much to learn. Despite the warnings from his adoptive father that gum on the street is not free candy, he enjoys it all. How is he to know that waving people are hailing cabs not being friendly and the "world's best cup of coffee" is merely an overused idiom. Oh, how Carol Gray's Social Stories would help him or Michelle Garcia Winner's You are a Social Detective book or a book on idioms!
Like those articulate adults on the autism spectrum who liken their experience to being anthropologists from Mars or citizens on the Wrong Planet, Buddy will have to study hard and have many tutors before he can even pretend to be "normal" or fit in. Innately, he is not at all bad though. Actually, his honesty and sweetness are refreshing to some. His idiosyncracies makes him vulnerable though, to others and are a social obstacle to overcome.
Countless moments come to mind when Reid has done quirky and "socially inappropriate things" (that's how you get the diagnosis, after all). Depending on your prerogative the things on that list can range from being appalling to endearing. I am the first to correct him, sometimes. Other times, I like to enjoy the luxury and gift of sitting back and purely accepting, appreciating the unique creation that he is, his magnificent mind, and his own perspective on the world.
I recall once during a church service when he was giggling, flirting, and practically dancing with the woman behind us. She is now a friend who I know, trust, and love but, at the time I hadn't met her. Feeling responsible to uphold his "program goals" and maintain the decorum of the service, I kept shushing him and using those not-so-magic words like, "quiet voice," "eyes in front," and who knows what else. Their shenanigans continued. Clearly, both were enjoying the interaction. This animated woman was instigating him not to mention distracting from my effort. I was torn between the two sides of my love. The soft side wanting to encourage their soul connection and get her phone number; the hard side towing the line on behavioral reinforcement.
These are the kind of internal dilemmas that give me neck pain. He really wasn't doing anything morally wrong. In fact, one could argue he was setting a better example than others of hospitality and worship by giving his whole self in the moment. What's a mom to do? Love unconditionally or train toward independence? Both, in turns I suppose.
Maybe this Christmas for just a day or even a hour, while school is out and no one's looking, let's let our kids be who they are without any correction. Let them refresh our perspective on the planet and the kingdom.
I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." Mark 10:14-16
Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it. Hebrews 13:1-3
They are focused on earthly things, but our citizenship is in heaven, from which we also eagerly wait for a Savior, the Lord Jesus Christ. Philippians 3:20
Do you know this movie? Holiday Inn is one of our all time favorite musicals. The movie covers the entire calendar from Valentines to New Year's Eve but, the message of this scene is appropo to Thanksgiving. Listening to his own chipper recording, reminds even Bing Crosby that thankfulness can transform any duldrum into gumption!
How true it is that a little gratitude changes our attitude! It's in the movies; it's in the Bible; it's real honest to goodness truth, as Mamie might say. Holidays can be hard times when the feelings and the circumstances don't match what we know to be true; our perceptions on those days may not be reality. We are staying put this year, in the clear, without travel or trappings to stress and strain. So, I will make my list now and carry it in my wallet for the next time I start to sulk.
I am thankful for:
1. a dentist I've had for 17 years
2. friends who pray for me
3. kids who are affectionate
4. money in the bank
5. kids who are readers
6. a husband who supports my success
7. a husband who can fix anything online and off
8. a husband who has loved me for 23 years
9. a free country where we can worship and study the Bible openly
10. knowing Jesus as a friend
11. a place prepared for me in heaven
12. living close enough to see the vastness of the ocean every day
Try it. Give me your top ten in a comment.
Sacrifice thank offerings to God, fulfill your vows to the Most High Psalm 50:13-15
I thank God, whom I serve, as my forefathers did, with a clear conscience, as night and day I constantly remember you in my prayers. 2 Timothy 1:2-4
...give thanks in all circumstances, for this is God's will for you in Christ Jesus.
Do you share my age-old dilemma of how to motivate fill-in-child's-name-here? What do I need to do to get him to do what I want done? What reinforcer will be motivating this week? What behavior of mine do I have to change to impact his? Should I do what the experts suggest, what the specialists promote, what I'm good at, or what works? And what does work? In the end it seems, all of us resort to some sort of chart. Can I tell you something? I have grown to hate them.
Reidy has an Achiever strength by all measures. Still I wonder, at what point will he--will he ever--be intrinsically motivated to do his personal best? Will he always need the proverbial carrot?
We had a private teacher at home for awhile with Reid. At the time, she split her time between two boys on the spectrum who could not be more different, despite carrying the same label. Becky had to dramatically alter her incentive and motivation plan from one house to the next. This made me feel better about my homeschooling tenure. If it wasn't obvious to her, then I hadn't been so stupid to have missed it all those years before. For one of her students, the ultimate fire under his tail was her simple statement, "alright, if you're not going to do your work, then I will have to call your mother." I was amazed to hear that was the extent of her strategy (and concerned that she might not have enough tools in her kit to handle what Reid was dishing out at the time). What a stark contrast to the hoops we'd jump through to get my son to simply come to the table, let alone put his name in the right hand corner!
Completely different personalities, same diagnosis (didn't I just write about this?). One boy is a rule follower; mine is not. Mine is a boundary crossing, envelope pushing, rule breaker. Draw him a line, he jumps across it. Give him a threat, and in the immortalized words of Clint Eastwood, he'll make your day!
So, my darling boy is no longer homeschooled, nor does he attend the touchy-feely, "work with me, not on me" holistic school of my original preference. In order to make some quantifiable progress, he now attends a highly-structured, scientifically-based, "behavior mod is our specialty" school. Not a pretty picture always. Let me tell you what I see there: a lot of charts!!
My sadness is not that I can't help in the touchy-feely school's library (although I miss that). My greater concern is actually a fear that we are, in fact, solving a short term problem at the expense of his long term potential. Evidence like Alfie Kohn's books, Punished by Rewards, Unconditional Parenting and many others, hook me in and haunt me. I am perpetually having to discern whether they resonate with me because of my own school experience or fit Reid's. I often feel trapped by his behaviors, with no choice but to use what is "proven" which is precisely what Kohn lambasts. Is there room for his alternatives in the autism realm?
Remember Summer in the movie, School of Rock? She is the over achiever, class do-gooder who needs to be in charge. She does not have autism, but she sure does like sticker charts, gold stars, and rewards. After the shake up of Jack Black's arrival as a long-term substitute teacher, she begins to loosen up and find different reasons to achieve. As he implements his highly unorthodox brainstorm to turn the class into a rock band, he assigns roles to each student. Since Summer is not particularly musical, Black makes her a groupie which will never do.
Parenthetically, I made a similar mistake recently. Attempting to rally support and organize our posse of moms at one of the Kingsmen performances, I said, "we'll be groupies." Well, the aghast look on one of the moms faces made me quickly realize, that is not what I meant! "I mean roadies!" who carry all the stuff and get them to the venue on time. I was using the terms synonymously, which they are not. What do I know about the music biz? Apparently zilch.
After hearing Summer's appeal, Jack Black concedes to naming her the road manager. This scene marks the transition for her between performing for the extrinsic reward and internalizing a motivation to simply do her best. I love it and wish it for Reid.
I was a bit like Summer. With my maiden name of Andrea Anderson, I grew accustomed to always being first in the alphabetical roll call and taking my assigned seat in the front row. I achieved my assumed aspiration of straight A's after my name. I learned by rote and met the teacher's expectations. You might say I learned "to the test," but sadly, I don't think I ever really worked to my full potential. There is a limitation placed by limitations. Maybe that's obvious. We think limitations in school settings are there to promote effective learning but in reality, they can lower the ceiling on what is accomplished. Whether or not behavior is not an issue, why can't the sky be the limit?
I suppose I longed for a teacher like Jack Black who, although unqualified by the world's standards and on paper, breaks free from the establishment. With raw conviction, charisma, and creativity he woos students into self-discovery and accomplishment. I find it refreshing that he doesn't care about appearances one iota. He has a good heart even if all the wrong words. What could he do with a Special Day Class or a fully included student? I'd like to see a sequel, School of Rock II: SDC.
Now it may seem sacrilege to compare Jack Black to Jesus but I am seeing a parallel. (Remember all analogies are flawed.) Jesus came and did not look or act like the kind of king the Jews wanted or expected. He was scruffy, undistinguished, and from Nazareth, of all places. Yet, He changed their lives from the inside out. He changed the old law and told them He was the Way. No longer did they need to keep all their laws to the letter. Now, simple faith in Him would cut the mustard. Following Him with genuine heart and soul and mind was a radically new expectation. They were used to ticking off their checklists of complex food rules, doing a sort of negative token economy of sacrificing animals to restore favor, and charting offenses of themselves and each other. Jesus told them to throw all that out; it doesn't matter. I want your hearts not your perfect, little, pressured habits and sticker charts!
I can't quite fathom how, but I believe one day in heaven an Almighty God will demonstrate the perfect balance between unconditional love, motivational strategy and reward structure. In His Word, He does mention jewels in our crown. Certainly, eternal salvation is the ultimate payoff for accepting Him on faith. I have always wanted the Bible to make a clear case for either behavior mod or unconditional parenting, but it doesn't. It gives examples of both. Maybe, God wants us to walk with Him in prayer and devotion so He can personally advise us on the particulars for any one child at any given chapter of life. So, ultimately He is our reward; when we realize that His unconditional love and presence lead us through any fog.
However, as it is written: "No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him" 1 Corinthians 2:8-10
Who has understood the mind of the LORD, or instructed him as his counselor? Isaiah 40:12-14
But now, by dying to what once bound us, we have been released from the law so that we serve in the new way of the Spirit, and not in the old way of the written code. Romans 7:5-7
you, O Lord, are loving. Surely you will reward each person according to what he has done. Psalm 62:11-12
Love... keeps no record of wrongs. 1 Corinthians 13:4-6
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
Ahhhhhh........the sigh of relief that comes when you know your child is in competent hands. The shoulders drop and regular breathing resumes. I just carried a tutor's bags and boxes upstairs and came back down to hear their joyful laughter and productive movement through the ceiling. The assurance that for 2 hours, you can safely invest in some uninterrupted personal time is as much the value of the therapist as the therapy itself. The question is whether to zero in on Bible study homework, pay some bills, savor a cappuccino, or start dinner....hmmmm, what will it be?
My favorite-movie-of-all-time is 
