Saturday, December 20, 2008

Myrrh Toothpaste and Gold Fillings: A Moriarty Christmas

My mom was a 2nd grade teacher throughout my childhood. She was adamant that anything entering our home be educational. We were not big consumers anyway, but at her insistence, we learned to value books and board games over electronics, "record albums," and most of what Target now sells. Between her legacy, years of home schooling and a veritable degree in autism training, I have developed a similar tendency to seek out games and toys that either strengthen social skills, improve proprioception, stimulate sequencing and reading comprehension, desensitize tactile aversion, or something.

Any purchase must pass through multiple filters. First, I must be able to justify it educationally. Then it must pass Reid's tough standards of being engaging and more entertaining than what he can conjure in his head. While Allie is our barometer on what is cool, pure fun or popularity is way down the list in my decision-making process. Instead, we evaluate based on whether the activity is visually motivating, offers concrete literal explanations, strengthens social skills, requires turn taking or develops critical thinking. We are loosening up now, but there was a time I purchased gifts based on how many IEP goals they addressed. I may have reached a compulsive level, you decide.

Our cupboards and closets are filled with specialized products from stores like The Therapy Shoppe, SuperDuper Publications and Timberdoodle. They are far superior actually, but not always kid pleasers on Christmas morning. In Christmases past, our living room has looked more like moving day at a Speech/OT clinic than any child's dream come true. The Mind Your Manners board game went over like a lead balloon. Allie rolls her eyes recalling a time Reid sent me to Toys R Us to pick up a specific TeleTubbies video he'd earned (by behaving appropriately at the grueling all day Saturday CYT rehearsals). Unfortunately for him, it was out of stock so I made an alternate selection: Mister Rogers' What Do You Do With the Mad that You Feel. Poor Reid, when I gave it to him he was too stunned to cry.

So it is, this Christmas, that I search for ways to make the Biblical reason for the season come to life in a concrete way in our home. Not with more stuff but with traditions and props that entertain while they educate about the historically significance of Christmas and the spiritual wonder. We are each giving 3 gifts to each other this year, dramatizing the three wise men who came bearing gifts to worship baby Jesus, the newborn King. You remember what they were: gold, frankincense and myrrh.

Guess what I found at Trader Joe's? Myrrh toothpaste! Actually, it is myrrh, fennel, propolis toothpaste from Tom's. Wow, that is the perfect stocking stuffer or what? It meets all my criteria, with a hygiene component to boot. And it's gluten free so if the kids don't comply, Jim can use it! I bought a case. (Kidding:)) Allie was with me in the store. We ran across it as I granted her request for her own tube of toothpaste. "How bout this one? for Christmas!" I said in my glee at the discovery. "That's totally disgusting!!" she scoffed. Now, to show you how self-aware I am, I replied with a straight face, tongue in cheek, "What part don't you like--the propolis, the fennel or the myrrh?" At which, we both cracked up laughing. I did buy the stuff but, she is holding out for her own tube of Crest.

Jim is wondering if we're trying to secretly embalm him since we learned that myrrh was used to prepare bodies for burial in Jesus' day. The myrrh actually foreshadowed Jesus' death on the cross reminding us that He came with the expressed purpose of dying for us. Try that on for an attitude adjustment each morning and night at the mirror. These object lessons are as much for us as for the kids. Apparently Reid is not the only one in the house who takes things literally.

So yesterday I was at Jimbo's, our local whole foods grocery, and what to my wondering eyes did appear? But two bottles of aromatherapy oil in scents oh so dear! I sprung for the cheaper ones mixed with jojoba oil and now have an olfactory link to the ancient stable. Aura Cacia has got my number. They offer this object lesson-in-a-bottle with no seasonal marketing or fanfare just there for the taking, for those with eyes to see. They categorize the frankincense as "Sanctifying" and the myrrh as "Comforting" on the labels. I am using a few drops of it--in my car diffuser and lamp ring--to stimulate my Advent meditation before it gets popped into a stocking late Christmas Eve. It reminds me what the Bible says about our prayers reaching heaven like sweet incense and that we are the aroma of Christ to those around us. If you were a scent, which one would you be?

Gold, I thought would be easy. Although since Allie and I prefer silver, I am not going for the obvious jewelry choice. I am actually still on the hunt for a gold incense box or bauble to put the toothpaste in? Or not. Perhaps at Whole Foods I can find some gold leaf sprinkles for the Nativity gingerbread cookies we make next week when there is NO SCHOOL! I'll keep you posted. Gotta go find gold that is fit for a king, The King of Kings.

On coming to the house, they saw the child with his mother Mary, and they bowed down and worshiped him. Then they opened their treasures and presented him with gifts of gold, frankincense and myrrh. Matthew 2:10-12

Then they offered him wine mixed with myrrh, but he did not take it. Mark 15:22-24

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 1:6-8

Place these words on your hearts. Get them deep inside you. Tie them on your hands and foreheads as a reminder. Teach them to your children. Talk about them wherever you are, sitting at home or walking in the street; talk about them from the time you get up in the morning until you fall into bed at night. Deuteronomy 11:17-19 The Message

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Tuesday, December 9, 2008

Elf on the Spectrum

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

Friday, December 5, 2008

A Clean Slate at the Library

Does your public library have a Happy Hour? Countywide, on the last Friday of every month, at every branch, ours does. Alcohol is not served; everyone's just very happy to return late materials with no fines whatsoever, no questions asked, no due dates checked, no snickering.

Thirsty one day, and not at my usual branch, I noticed the sign on their counter. Not to be believed! Could this be? I inquired. Yes, indeed, they would rather have their books back--no matter how late--than leave them missing in action. They waive all fees, even their potential profits from replacement fees. I had incurred upwards of $50 a month before this happy time. This was very good news for me!

My husband jokes that I have lost library privileges in every state in the union, which is not quite true. We haven't moved that much!
What is true, is that I am frequent library user, a horrible procrastinator and an avoider of conflict (Harmony). So, when I have books that are more than a couple days late, I go into avoidance mode feeling I can't show my face at the local branch. I bury my head shamefully in the sand while the fines steadily increase, like a taxi meter headed for the airport, finally exceeding replacement value. Of course, loving books as I do, I eventually own up and pay the exorbitant fines, considering it a good deal compared to the equivalent cost of much shipping and handling at Amazon. The library is certainly a good cause.

Until I learned about Happy Hour! Now, I mark my calendar for the last Friday of every month, anticipating another new grace period, while I search under mattresses and behind furniture for the rogue book or tape. The library has long been my favorite institution, all the moreso now! Between my over-consumption of books and Reid's penchant for stickers and de-constructivism, we have tried the patience of many a librarian.

When we were home schooling I would routinely check-out a stack of 15 or more books. Allie had her own stack; maybe she could carry 8 in those pre-backpack days; and Reid got books then too (not movies). Most of our weekly loot, I had requested online from other branches in order to keep the county employees busy pulling titles at every branch in the system, trucking them across town for my convenience, and flagging them with my name on a special shelf. (This is a commonly available service at most libraries, although not widely publicized.) I was compulsive about gathering resources that correlated with each of our unit studies or whatever curriculum-of-the-month I was using.

If that wasn't enough to rebuff the proverbial Marian Librarian, Reid was infamous for obsessively removing stickers from library property. I didn't think of it as criminal when he was young (neither did they). It just irked him to no end that they obstructed the illustration and text on the covers of books and boxes of CD's and DVD's. When forced to pay $1 a piece, one is quickly aware of the astonished array of stickers they use on one library book. There's the barcode, of course, then the color-coded juvenile tag, genre stickers, branch letters, alphabetical filing tags and sometimes a donor acknowledgement. "Why oh why oh why?" I asked myself many a time, as we'd recreate their placement on the gummed up vinyl, en route to ditch them in the return vault. (Maybe Amazon is better?) In Reid's mind, they all had to come off so he could see the information he cared most about: the production studio and ratings or the author and copyright. For both these reasons, the library was our family's version of Cheers!, a neighborhood place where "everybody knows your name."

I was there yesterday, my slate having been freshly cleaned. A new clerk scanned our selections at the desk. I know she's new because she didn't know Reid or me. They all know us and we know all of them. "It's such a good feeling," as Fred Rogers would chant. So, when there's a new hire, it feels strangely rude not to introduce myself. Yet, to do so, seems just as oddly presumptuous. Why should she should recognize us, yet? In this case, bubbly Joanie walked over to do the honors. Wishing me a hearty, Happy Holiday!! with a two-handed handshake (it's impossible to hug across those wide counters) she intervened, "Have you met Mim?" In short order, we were introduced. I'm not sure Mim will remember my name, but she will remember the title Joanie assigned us, "She's our best customer!" Now I've heard Joanie call other people this, but I must say I swell with pride, just the same. In mock humility, I joked that I was definitely their highest paying customer. Surely, I must be underwriting a renovation or expansion or something they're drafting. At that point, the head librarian chimed in, "yes, see that whole wall over there? It's hers!" So, you see, I have not lost any privileges whatsoever.

Like a flagrant credit card user, I am all the more revered. In fact, they want to increase my credit limit. After Reid destroyed one too many DVD cases, they designed a special system for the Moriarty family. We got our own thick, plain white, vinyl 5-disk case in which to carry disks home and back. This required additional training of all the staff (much of which I did pro bono. They kept the DVD box and artwork encrusted with its priceless (to them) and annoying (to Reid) barcode and inventory stickers; we got the movie. At that juncture, I told them I'd almost rather they revoke our privileges, so Reid would experience the natural consequences of his peeling fetish. "Oh, no, no, no, no, no, we don't want that," they cried in unison. "We need the circulation numbers." Apparently, circulation numbers drive their budget. The more titles people check out, the more county money they are allotted to purchase new materials and enhance their collection. Now I see why they love over-users like us.

When I carry a debt at the library, my heart is heavy. I feel banned from my favorite place to browse and choose books. Trapped at home, unable to find my Get Out of Jail Free card (the missing book) I enter a stubborn refusal to pay for something I only intended to borrow. Grounded from a favorite activity, then a paralyzing guilt of neglect and tardiness set in. Chastising myself is depressing and being angry at Reid for his part in it, is not productive. Now, I don't want to over moralize this but, isn't sin just like that?

Happy Hour sets me free! Last time, I was visibly uplifted, walking out to the car with a fresh stack of free books! The parallel hit me with the salt air; Jesus forgives and forgets our iniquity. He gives us privileges back; the right to pray to Him and be heard without obstruction; the carefree feeling of innocence and childlike faith return; the squeaky clean shine of having unrighteousness removed as far as the east is from the west. The only difference is that His happy hour can be daily or hourly, as needed.

Yesterday and the day before, Reid and I were searching, searching, searching for the 3-disc Fraggle Rock set we'd borrowed the day my sins were washed away (November 28). Videos being 7-day rentals, it was due back this Friday, library day. Yikes. Trying to repent from my wayward ways and demonstrate real improvement after a recent reclusive hiatus, I told Reid, "we can only go if you find Fraggle Rock." I was determined to keep short accounts and stay "in the black" this month. I tucked him in saying, "let's ask God to show us where it is. He sees everything and He knows where you left it." We prayed in earnest and turned off his light. I no more than stepped into the hallway as an "aha" popped into my mind--the laundry basket! There it was, buried halfway down. Saved again! Praise God, He wipes away our sins, gives us third and fourth chances AND answers prayer. We returned it today as an even exchange and I have library privileges out the wazoo, thank you very much.

Wash away all my iniquity and cleanse me from my sin.
Psalm 51:1-3

But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his Son, purifies us from all sin. 1 John 1:6-8

When Jesus saw their faith, he said, "Friend, your sins are forgiven."
Luke 5:19-21

"Blessed are those whose transgressions are forgiven, whose sins are covered.
Romans 4:6-8 far as the east is from the west, so far has he removed our transgressions from us.
Psalm 103:11-13

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It Happens Bit by Bit

Jim and I had a pretty traditional wedding with one exception. In addition to Scripture readings, we had one of my college advisors read an excerpt--about "becoming real"--from The Velveteen Rabbit by Margery Williams. For whatever reason, I first read this book as a college student, not as a child. At that age, Jim and I prided ourselves on being transparent, vulnerable, honest, real. He liked me best without make up; I knew he was no poser.

I read the book to our kids when they were little and choked up at the new significance of this allegorical tale. It is a parable that goes way beyond the ostensibly sentimental story. It offers numerous applications on acceptance, motherhood, the power of love, and unconditional relationship. So many that another book, The Velveteen Principles, has been written by Toni Raiten-D'Antonio to analyze and put it into adult terminology.

Listen between the lines to Meryl Streep's sensitive reading of it with music by George Winston. When read with integrity, life experience, and heartfelt belief it still moves me.

The Lord has done a great deal of humbling in both Jim and I since 1986. We thought we were "real" then, let me tell you, it's all relative. Some wear and tear comes from the inevitable passage of time, relocating frequently, and becoming parents. Even more comes from being the responsible party for someone who is impulsive, inappropriate, embarrassing and at the same time, naive, well-intentioned and so precious to us. Whether you have a "spirited child," a "challenging child," a "special needs child," an "out-of-sync child," or an "indigo child," it is a high maintenance job! We are like EMT's or firemen who have acclimated to crisis mode. We become light sleepers, quick thinkers, fast actors, and smooth operators. No matter what happens we remain calm, consider all possible outcomes, and drive carefully but quickly with our sirens blaring.

I think the Biblical word for "real" would be sanctified. If the velveteen rabbit was saved by the boy from being left outside all night, we are saved by God and redeemed from the pit. Then bit by bit, loving and being loved to tatters, progressive sanctification happens. As we die to sin and live for Christ, we become more like Him. It is not about our salvation; it’s about how we live after we’ve been saved.

“Does it hurt?" “Sometimes,” said the Skin Horse, for he was always truthful. You bet. People laugh. People point. People blame. You get hit. You get bit. You are tired. “When you are Real you don’t mind being hurt.” “Does it happen all at once,” he asked, “or bit by bit?” He will be fine. We can do this. I know he'll get better. Why me? What do I do? I can't do this. What will the future bring?

“It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But those things don’t matter at all, because once you are real you can’t be ugly, except to people who don’t understand.”

The skin horse shares, "It was the boy's uncle who made me real." For us, it is Jesus who makes us real. Real enough to run wild as march hares into eternity, liberated from sin and the sawdust of our fleshly existence here. It is He who understands when others don't and loved us enough to shed his own blood in our place. We can't be ugly anymore. We are a new creation. God sees us through the blood of Christ and in His perfection. No longer shabby sinners but beautiful, perfected, sanctified, clean as the driven snow, pure like the lamb of God. Keep it real, friends.

Your new life, which is your real life—even though invisible to spectators—is with Christ in God. He is your life. When Christ (your real life, remember) shows up again on this earth, you'll show up, too—the real you, the glorious you. Colossians 3:2-4

But we know that when he appears,
we shall be like him, for we shall see him as he is. Everyone who has this hope in him purifies himself, just as he is pure. 1 John 3:2-3

God, who got you started in this spiritual adventure, shares with us the life of his Son and our Master Jesus. He will never give up on you. Never forget that.
1 Corinthians 1:9 The Message

Saturday, November 29, 2008

The Power of "the Momb"

In a fit of desperation once, attempting to assert authority over my kids, I relied on that age-old expression that unequivocally answers the "why" question, "because...I am the mom." Only I was flustered and mixed it up with "being the boss." What came out was, "I'm the bomb!"

It was highly effective because we all burst into laughter (not because they respond favorably to dictatorship). Moms wield immeasurable influence. When my kids were infants (one not sleeping so well) I marveled at the power my drowsy hand on their crib had to soothe. My voice changes their behavior. My wave makes their day. My prayers break down the doors of heaven.

True confessions: I neglected one very important entity from my Top Ten list yesterday. My Mom! I am eternally grateful for her prayers for me, her formation of my life, her investment in my kids, her example of optimism in any circumstance, and her bold belief. She is the bomb! (Not only that, she's also my most faithful reader!)

Moms are moms, right? By that I mean, they are so woven into the fabric of our lives that we often forget they are other. So integral is their impact on us. This clip by the author comedian, Nicole Johnson at Fresh Brewed Life, is an apt illustration of how this happens.

We laugh because its true. Each of us is guilty of overlooking our moms. Those of us who've become moms, also laugh in recognition of how the shoe feels on the other foot. In all seriousness, my mom has lived a life of everyday sacrifice creating her own cathedral of beauty as a legacy. And so, I believe I can too...and so can you! For as she'd be the first to tell you, her strength is not her own; it comes from the Lord, the Maker of heaven and earth, through His Holy Spirit.

I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me.
Galatians 2:19-21

Children's children are a crown to the aged, and parents are the pride of their children.
Proverbs 17:5-7

But Mary treasured up all these things and pondered them in her heart.
Luke 2:18-20

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Wednesday, November 26, 2008

I've Got Plenty to Be Thankful For!

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. 
1 Thessalonians 5:17-19

Tuesday, November 25, 2008

Trip to the Dentist

No autism blog would be complete without a section on dentistry.

Here's one and here and here. For autism moms, dentist stories might be the equivalent of childbirth stories for other women or war stories for men a generation ago.  We all have at least one and tell it like a badge of honor or a rite of passage into the ranks. The difficulty achieving basic dental care is one of the many, many things I never imagined I'd be dealing with like potty training a teenager or soundproofing my house so my neighbors don't call CPS. Compromising positions which take "character building" to an Olympic level. Incidents we know are unconscionable to most yet, totally understandable to us; they go with the autism turf. 

So, here is one of mine. We switched from my beloved dentist to a pediatric dentist recently in order to better serve Reid's needs. The new dentist has a pimped out office with ocean murals, flat screens in the ceiling and a Blockbuster selection of DVD's and video games in the waiting room.  Even with all that--perhaps because of all of that--Reid was unable to hold still enough for long enough to get the amount of sealants and work done that had accumulated in the years that we'd been trial and erroring it with my patient, prayerful hygienist.  So Dr. Ocean Dentist for Kids got the job of referring us to Children's Hospital for the full treatment under full anesthesia.

We survived that and I will disclose full details in a longer post later.  For now, let me describe the more recent check up that followed back in his deluxe office by the beach.

Like any good mother, the night before the appointment I was flossing his teeth and what to my wondering eyes did appear but, two chipped teeth! The bottom two, right in the center. Horror of horrors! How did this happen? When did it happen? What's to be done? Oh no! not this! Caps? More anesthesia? What will this mean ?

To answer the "how" question, I didn't have to wonder too hard. Reid chews, a lot. Whether to relieve stress, receive proprioception or just test the strength of his teeth, I don't know (that would be the why question). He just does. Any number of things could have been the culprit. Hard objects, like buttons off every single polo shirt, rugby shirt and even some pants we own. His old school allowed gum chewing as a compensation which was not ideal since he swallows it. At age 14 though, the new school deemed the chew toys totally not age appropriate and the gum-in-school rule totally not bendable.  So, he is learning--the hard way--to just not chew.  Last year, we went through one shirt a day, literally. I began to shop at thrift stores moving to the second "R" in our mantra, reduce, re-use, recycle. Unable to reduce the number of shirts we were consuming, I could at least re-use ones already manufactured and not put an unfair drain on the sweat shop labor of Taiwan. At $4 a shirt, it was costing us more than a Starbucks fix.

Reid tests his teeth on other materials besides fabric: pen caps, ink pen chambers, plastic packaging, Unifix cubes, marker tops, pencils, credit cards, bottle caps. He has Crocodile Dundee beat. So, I knew not when but, could easily imagine how the bottom teeth had chipped.

To save my pride at least momentarily, I decided to wait before divulging this information to the hygienist. I'd wait and see if she noticed. She was new. Emerging from the aquatic hallway to debrief with me afterward, she seemed to think she "got a lot of work done." Is it ever as much as my daughter gets? Ever a full cleaning? "He has more calculus than plaque", she shared. I have gone to a dentist twice a year for my entire life and I have no idea what calculus is. Is this "new dentistry" like new math and I have to pick up a new lexicon. Or is it metric? 

I asked, but even the answer didn't make sense. I decided she was young and on new turf. Perhaps she couldn't translate her jargon into my plain old English. When I brought up the chipped teeth (secretly hoping they would have spontaneously healed by then) she launched into another foreign diatribe (I know some big words too, missy) about # 8 and 9 being affected......blah blah blah...subcutaneous... I missed a lot of it before asking, "Which ones are 8 and 9?" "The two front teeth," she says. There's hope for her yet.

When I explained my best guess of how the teeth had gotten chipped, her inane self-evident reply was, "that's not a good idea. You shouldn't let him do that." It was then I realized she must not have kids, of any age, or any kind. She must never have babysat or had a younger cousin. Do I look stupid? Obviously, this is bigger than simply being told it isn't a good idea. OK, are you related to the rental agent at Hatteras Realty? What part of autism don't you get?! Did you read in his chart about the recent need for full anesthesia? Did you notice he's a teenager? You honestly think my telling him its not a good idea is going to have any impact? What other light can you shed on my task of parenting?

In God's infinite grace, there was a boy about the same age in the waiting room admiring saltwater fish with me. He had chipped 4 of his teeth by jumping into a pool. (This is a normal kid, no label that I could discern.) His mother and I commiserated over the sick feeling of seeing chips on our babies' precious grown up teeth that are supposed to last them their whole life. Ugggh! Her son smiled to reveal his and I honestly couldn't notice. The dentist and hygienist concluded, "we'll keep an eye on them and maybe later (for another office visit fee) add some composite." The problem was only cosmetic. The solution was too and would likely "chip again anytime he bites something hard." Like a cell phone antenna? I wondered silently.

Thanks for listening to the latent anger. I weary of being polite. With the optimism of inexperience, the young hygienist's final move was to schedule another sealant and attempt it in the office (as opposed to in hospital). Now that's progress!  And I could grow to love her!

But he gives us more grace. That is why Scripture says: "God opposes the proud but gives grace to the humble."
James 4:5-7

From the fullness of his grace we have all received one blessing after another.
John 1:15-17

Have mercy on us, O LORD, have mercy on us, for we have endured much contempt.
Psalm 123:2

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Friday, November 7, 2008

High low points or low high points

We play a game at dinner which began as a way to structure conversation. Since it worked, we still do it. When all else fails for conversation starters with my now- teenagers, they will almost always play at High point Low point. It's easy. No board required, no dice, no pieces to chew or lose under the sofa. (I like the Food for Talk resource too if you prefer to spend money on the desperate attempt to get family to talk for food!*!*)

Here's how the low budget version works. Everyone shares their low point of the day. For Reid this is often, "I didn't get a star in Math" or "I didn't earn music today." Good to know. For Allie it might be, "We had three tests and you were late picking me up," revealing what bothers her most.

Then everyone shares the high point of their day. For my bottomless pit, always ravenous, celiac husband, it might be the meal I just served. Mine might be finding a comment from a non-relative on my blog! Yesterday, Allie reported that her high point and low point were one in the same. She wasn't just copping out to save time and get back to her ipod. In fact, her drama class is challenging her beyond her comfort zone. At the same time, it is surprisingly engaging and fun. 

This tied right in to my current Beth Moore study, Psalms of Ascent, which is awesome. Our assignment for Psalm 126 was to draw a timeline of the psalmist's record. In the first 3 verses he recounts the highest highs when God's work in his life seemed too good to be true. Then, leaving space between the lines for the lowpoints of fear and insecurity which coincide, he concludes with promises of what God will do again. He is confident that the Lord turns the limbo into a great harvest when we wait. 

Psalm 126 
The Message by Eugene H. Peterson

A Pilgrim Song

1-3 It seemed like a dream, too good to be true, when God returned Zion's exiles. 
We laughed, we sang, 
we couldn't believe our good fortune. 
We were the talk of the nations— 
"God was wonderful to them!" 
God was wonderful to us; 
we are one happy people. 

4-6 And now, God, do it again— 
bring rains to our drought-stricken lives 
So those who planted their crops in despair 
will shout hurrahs at the harvest, 
So those who went off with heavy hearts 
will come home laughing, with armloads of blessing.

In my own application, I'd take it one step further. There is something intrinsic to the lowest points of life, the hardest, biggest challenges we face that is actually a prerequisite to the highest highs. Allie's example was a required drama class which had her in trepidation of taking risks, not knowing the "right" answer, making a fool of herself, and blushing ten shades of red. It was the hardest point in her day. But from it came the highest point of glee and accomplishment because she mastered it, signed up to audition for a main part, and broke out of her shell!  

Don't we all crave transformation? God brings it on through trials. In more of a macro lens, I spent the lowest 6 years of my life tearfully praying on the stairs of our condo. Plagued by shame and stymied by our infertility, I was in constant pleading with God for a baby. Little did I know (or trust at the time) what the Lord had in mind for us. In short order, once His perfect timing had come, He allowed us the incredible, ecstatic, highest point of my life: the blessing of adopting beautiful boy-girl twins! Jim and I walked on air for quite some time. Like a dry seed, our greatest trial contained the potential to burst forth like green sprouts in damp, rich garden soil but only when we gave it over to God, the master gardener. And only after we waited.

Life is full of highpoints and low points. The two pictures flanking the cover of today's Wall Street Journal show it clearly; the thrill of victory and the agony of defeat recur relentlessy from birth until death and from continent to continent. It is what universally unites humankind. Only the particulars vary from person to person.

I think maturity comes from experiencing enough low to high swings that we gain an ability to anticipate them. I am grateful that my daughter has made this association relatively early in life. The ultimate would be to embrace difficulty trusting full well the Father in heaven who "will do it again" and transform, do it again and redeem, do it again and turn the lows into highs. He promises that in Psalm 126 and there isn't one promise in Scripture that he's broken.

If I could load mp3's on my blog, I would put Chris Falson's "Like A Tree" here.  Arrgghh! Reid is home sick today singing, "I'm OK When Things Don't Go My Way" off the Kibbles CD segueing into "Feelings...make a frustrated face." Appropo! How does he know?

For no matter how many promises God has made, they are "Yes" in Christ. And so through him the "Amen" is spoken by us to the glory of God.  
2 Corinthians 1:19-21

He will be like a tree planted by the water that sends out its roots by the stream.
It does not fear when heat comes; its leaves are always green.
It has no worries in a year of drought and never fails to bear fruit."
Jeremiah 17:8

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.  James 1:1-3

photo credit:

Thursday, November 6, 2008

Kingsmen Rock!

The Kingsmen recorded a debut CD last month. I hardly know where to begin to itemize the cornucopia of blessings it holds.

It is beautiful from so many angles. Takes me back to a sculpture class I took for my art history degree. There was something so obvious, yet eye-opening about walking around a work of art to appreciate it, as opposed to standing in one spot in front of a painting.

Music, even more than sculpture, is multi-dimensional, changing with each hearing, venue, and circumstance of the listener. 

The Kingsmen is a band of four guys who are all clients of the Music Therapy Center of California. They range in age from 10-15 and rehearse weekly with Rachel Gant as a facilitator. Charlie, Conor, Kenton and Reid hone many skills in order to make music together. They interact as a team, read each other's body language, listen intently for cues, tolerate diverse senses of humor, exercise patience, and encourage each other to new milestones. Their commitment and willingness to perform have yielded an incredible sense of confidence and achievement in each of them.

Without any precedent of what to expect, the Kingsmen pulled out all the stops to capture their current repertoire of hits including Three Little Birds by Bob Marley, Meant to Live by Switchfoot, and the live crowd pleaser, Hang On Sloopy. Each of the band members have a solo on the CD which rounds out the project. During the 3-hour recording session there were many smiles, and a definite mix of jubilation, fatigue, and concentration. Working toward a common goal, the boys now have something concrete to show for their efforts and share with the world. They are proud of the outcome!

I am proud of Ted Vaughn and Chris Hobson who made the recording session a reality at our church, Solana Beach Presbyterian Church. Ted has an interest in all things musical. More than that, he has caught the gestalt of the Kingsmen. Like a quarterback clutching a pigskin and driving toward the end zone, he has philosophically embraced what the band has to offer others in our community.  Everybody scores when they enter the spotlight and do their thing, rather than be relegated to the sidelines. Chris defies description. With the mystery of a kid-whisperer and his impeccable ears for sonic integrity, he is silently impressive. The interaction between these minds was something to behold.

At my first hearing of the recording, I used the word, "sweet" (of course, I am the Mom). The second time, "heartwarming" came to mind. I've landed on "endearing." Others say it has "raw honesty" and "tells the story of these guys." Kenton's rendition of Ingrid Michaelson's "The Way I Am" brings tears to your eyes. 

These boys are fast becoming young men; they have come a long way from "early intervention." Now they are finding a niche in society. In an effort to stay age-appropriate, their music therapy has morphed from one-on-one sessions to this more demanding and normalizing social experience of being in a band. Music is a bridge that can catapult them into "real world" encounters.

They played last year at a local Border's bookstore, Christmas on the Promenade, and several Walk Now for Autism events. What we find at these gigs is that despite their emerging musicianship and irregardless of their performance any given night, the boys have a message of struggle, promise, and victory that is universally relevant and inspiring. The manager at Border's commented that they were better than any in-store event he'd ever booked. Mind you, I know they weren't better technically, but their effort was greater and as a result the experience seems richer to the audience. Like the widow who gave her last mite, these guys are walking parables. Many life lessons are magnified by their example. Oddly, (and fortunately, for the moms listening in trepidation in the wings) not much explanation is needed for the audience to "get it." The boys can't hide their struggle or their success. People are moved for reasons that are hard to deny and don't need to be explained.

They will play at our church during December. I am both nervous and excited about this.  I can't help but hear countless Biblical foundations through The Kingsmen. Perhaps they are able to convey these truths more profoundly than the professional worship leaders we are used to hearing up front. Precepts from the Bible jump off the pages when they deliver culturally relevant lyrics like "you know you gotta help me out...." from the Killers "All These Things that We've Done" or "we were meant to live for so much more..."from Switchfoot or "don't worry about a thing..." from Bob Marley.  Are those not doctrinal sound bites that resonate with God's Word? No wonder they're so full of hope!

Now, I must figure out how to load MP3's on a blog.

If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!  Ecclesiastes 4:9-11

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  Matthew 6:33-34

What good will it be for a man if he gains the whole world, yet forfeits his soul? Or what can a man give in exchange for his soul?  Matthew 16:25-27

"I tell you the truth," he said, "this poor widow has put in more than all the others." 
Luke 21:2-4

Monday, November 3, 2008

More Music Mastro

Ours was a weekend full of music that ran the gamut from Kibbles Rockin' Clubhouse hits to Coldplay covers to Mussorgsky's Hopak from "Sorochinsky Fair." Scratching in my mind are partial tracks from each of these as I face Monday morning. My husband was hanging on by the hair of his chinny chin chin to keep up with the whirlwind schedule the kids and I had memorized.  Reid sang at least 4 times from the Walk Now for Autism stage on Saturday.  Allie played flute in the first San Diego Youth Symphony concert of the season. High brow, low brow, we were all over town.

The San Diego Youth Symphony honors a music educator each year who has devoted their career to developing young musicians.  Dean Hickman, chosen this year, gave a brief but moving acceptance speech. You know I love music and its myriad benefits are already swirling around like visions of sugarplums in my head. I spent last week helping write the mission statement and vision for Banding Together, a non-profit organization newly established "to make music with people with special needs to unleash their creative potential and connect in community." (I've memorized that after tweaking and typing it so many times.)  

So, Mr. Hickman's sentiments are ringing in my ears.  As he eloquently said, music is the universal language.  By teaching it, we prepare future leaders of the world with character, discipline, and skills in every discipline from math and physics to diplomacy and foreign language.  His own son grew up in the ranks of the SDYS and is now a principal trumpet player for a symphony in the midwest. He told of international travel opportunities where students unable to communicate one word of each other's language could sit down and engage at length over a piece of Mozart music.  So strong is the language of music. Agreed.

Given our family dynamic, I couldn't help but notice one itty bitty inaccuracy. When the inimitable conductor touted his truly outstanding program, he pointed out the beauty of this annual concert is that it features all five levels of the SDYS program thereby displaying the development and progression of musicians through every ability level. Well...almost every ability.  

I am not suggesting that the SDYS take on students with diagnosed disability. But rather, wouldn't it be nice if a similar program existed that really was fully inclusive? Well, it just soon may! 

Maybe not in the classical vein but with a similar goal of developing musical talent at all levels. Only a few precedents exist that I have been able to unearth. The Naturals is a band in Chicago founded by music therapists at the Creative Music Exchange. They have attained attention from the media here if you want to hear them.

Keys to the Studio in Toronto is another one.  People inside and outside the disability world are excited about this place.  News coverage lists the professionals who volunteer and connect under the studio roof.  Listening to the CBC audio interview with founders, John Jowitt and Salina Eldon, gives me goosebumps.  As he says, "music is an open, infinite field that allows for all kinds of sound.  It is also a method of communication and a way of seeing what's in peoples' minds. The connection that you develop when playing music with someone is very strong...and leads to social connection..which is really helpful integrating people with each other."  I want to meet this guy!

In order to allow artistic expression and build trust, there is no right and wrong at Keys to the Studio.  Doesn't this smack wonderfully of Greenspan's Floortime and RDI?  By following the child's lead, withholding preconceived expectations and accepting each other's ideas as valuable, we build relationship and engagement.  As this generation of autism grows up, the world will need more programs like this for teens and young adults.

As I manned the MTCCA booth last Saturday at the Walk, I was quickly reminded how much music has driven and transformed Reid's development.  I could honestly say to the throngs of parents filing through the resource fair:  "Reid grew up the songs in the In Harmony curriculum. Before they were published, Angela used them in her private sessions with him."  "Until age 8, everything he knew he'd learned through music" (counting, the alphabet, greetings, sharing, Bible verses, the Lord's prayer, days of the week, months of the year, continents).  "Music engages him instantly because with it he can access both sides of his brain." 

We call her Lady Babyish now, but the female voice on an old Discovery Toys (check out the new Autism Program on their site) "Sounds Like Fun" cassette was his first teacher.  She covered a lot of ground with him at naptime, bedtime, and drive time.  Thankfully, we've progressed from there to more age-appropriate musical selections.  Much to my dismay, my car radio is now tuned to Star 94 and I am having to edify "Laura's Dirt" and Jeff and Jer's morning show on a regular basis.  Reid, "you know 'dirt' is actually gossip which is harmful. Remember what Judy Rogers (another awesome early musical educator in Bible literacy) sang about the seven things God hates"? Be that as it may, music remains a great vehicle for lifetime learning, recreation, and "therapy" at any level.

The vision for Banding Together includes a recording studio space where professional and amateur musicians, of truly ALL abilities, can pursue their passion together. Turning obsession into vocation as Temple Grandin exemplifies and advocates in her book, "Developing Talents," can happen--not in a vacuum--but in community with others who share the same passion. Through mentorship, jam sessions, workshops, open mic nights and recording opportunities, we intend to take the goals of the SDYS to the "n"th degree. Stay tuned...

As they make music they will sing, "All my fountains are in you." 
Psalm 87:6-7

So I was afraid and went out and hid your talent in the ground. 
Matthew 25:24-26

But each man has his own gift from God; one has this gift, another has that. 
1 Corinthians 7:6-8

There are six things the LORD hates, seven that are detestable to him.  
Proverbs 6:15-17

Wednesday, October 29, 2008

I Hate Charts! (but I just made another one)

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

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Tuesday, October 28, 2008

Introvert or Extrovert?

Where do you sit at church? Back, middle, or front? Side, center, or balcony? I personally have always chosen the side, middle. We have parked in the same section, if not the same pew, of our church for about 17 years with only minor variation. People know where to find us. I am always flabbergasted when someone says, "Haven't seen you in awhile. Where have you been?" Same place.  I know exactly where I've been (out of view from much of the congregation). Every single Sunday, we're there. Not hiding, just out of view, around the side.  This choice of seating becomes convenient if we need to bail out with Reid. Our little nook offers security should any of a number of inappropriate behaviors flair up mid-sermon; we are not as disruptive to as many people.  It makes perfect sense now but, what I'm not divulging is that we sat there way before the kids were born--just a few rows up.  Go figure?  My theory on pew selection is that it loosely correlates with introversion and extroversion.  (I have no link or research with which to substantiate that.)

It's not that I wear the pants in the family.  I think the rest of my crew have just followed my lead all these years, in this one area. Not last night. Jim is out of town so the kids and I slept through the morning service which meant defaulting to the 5:45 evening service. That change of routine in itself is enough to shake up the seating, right? The lighting and sound are also different which make our usual side transept seem more remote than secluded.  

Reid was in rare and wonderful form for some unknown and unpredicted reason. He bounded out of the car, up the patio stairs, waving hello to everyone as if he were a former pastor back from sabbatical. Calling everyone by their full names, he zoomed his beeline for the sanctuary. "Hello, Paula Mazza!" "Hello, David Hall!" (the band director at Allie's old school).  His quirky habit of using full names is based partly on hearing me refer to people and partly on seeing them in print.  If he's ever seen your name listed on a recital program or church bulletin, it is emblazoned on his memory in that exact typeset configuration.  As a result, he feels quite close to the headliners, and goes straight to the top of any organization.  He associates with the conductor at a concert--not the ushers; the senior staff of the church--not volunteers; the manager of the restaurant--not busboys!

It gave me pause to watch him have a complete conversation with the sound engineer, our new best friend since he recorded the Kingsmen band's first CD last week.  His employment of these ordinarily basic skills is akin to pulling out the wedding china and good silver.  It was rare indeed, to see them in everyday use. He approached Chris with a glowing smile and friendly touch, "Hi Chris Hobson. Remember you recorded the Kingsmen?  That was so fun! Right up there (pointing)...on Monday.  This is going to be the best service ever!! (fists clenched in glee) Mike McClenahan is preaching on the Splash series.  I can't wait!!! (quivering)"  All that was delivered in elevated pitch and speed with some overflow of motor movement, as a team of professionals could point out. Whatever*!#.  It was relational, warm, genuine, and reciprocal in my book!  

On and on he went as Allie and I sat unobtrusively in the darkened center, middle.  Where he stopped was in the second to the front row, center! "I want to sit next to Pastor Josh," he announced."  "I am way out of my comfort zone," I thought to myself.  Good thing I can fake otherwise.  We moved up and sat within the cluster of pastors presiding.

Like a cake is 3 parts flour and 1 part sugar (with some butter and egg thrown in for good measure), our kids are a couple parts diagnosis and a couple parts temperament.  It can be very hard to separate one from the other.  Where does a stubborn strong will stop and non-compliance begin?  When does over-sensitive become tactile aversion?  How can one distinguish manipulation from inability?  If you can answer these questions, you should really take up the fine art of early childhood diagnosis.  If not, join the club.

All I know for sure is, despite his significant language, social, and behavioral challenges, my son is an extroverted, gregarious, young man who loves people and has a mind like a trap.  I am so proud of him.  And secretly, I have come to love the tension in that, the irony, the oxymoron, and the element of surprise.

Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone.  Colossians 4:5-7

I hope to see you soon, and we will talk face to face. Peace to you. The friends here send their greetings. Greet the friends there by name.  3 John 1:13-14

For where two or three come together in my name, there am I with them."  Matthew 18:19-21

photo credits:,

Monday, October 27, 2008

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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