Mentorship right under my nose

What a week last week was! Four school night's out can nearly do me in.  Each night was worthy: an ASA film festival, our Banding Together board meeting, the Miracle Project launch in San Diego, a Kingsmen gig, Young Life fundraiser and Prom!!  Yet, on the heels of these daytime highlights: Allie presenting her "senior legacy" (one of 7 voted by classmates), an IEP, extra rehearsals and of course the up-do hair appointment, nails and pre-prom prep, they created a dizzying array of highpoints necessitating several take out dinners and a do-nothing Sunday.

Life is full. Where to start?

How 'bout with a line from yesterday's sermon? Summarizing a sermon on discipleship, our pastor implored us to, "look behind you, and see who's following you." All of us have opportunities to mentor and be mentored.

I saw this Friday night. A group of young musicians, The Dudes' Bandslam, are steadily following Reid and his Kingsmen bandmates. The Dude's Bandslam has been together a little more than a year. They opened Friday night for The Kingsmen who've been gigging for five years.

Mentoring is one of the key buzz words embedded in the threefold mission of Banding Together: to give music therapy scholarships, mentorships and instruments to youth with special needs. We toil in trial and error to create the first chicken, or is it the egg, of a mentorship program.  Gaining momentum, we were just awarded a grant from WRAMTA for a series of Jam Sessions linking local musicians with kids. Another smashing success that's evolving are Soundcheck Jams with touring musicians at the Belly Up Tavern. They deserve a post of their own.

Try as we might, it seems the most solid example of mentorships is right under our nose. It was obvious last Friday night; The Kingsmen themselves are the mentors!  How often is this how God works?  His ways are mysterious and higher than ours.  While we're busy compulsively planning good things, He hits a pop fly into left field. His upside-down Kingdom way never ceases to surprise and delight me. It makes me laugh honestly, in acknowledgment that it is so much better than anything we could have asked for or even imagined--around any brainstorming board table.

Back to the gig: the Dudes' Bandslam played the first set at our coffeehouse fundraiser.  We do a series of 6 of these throughout the school year.  Local high school bands and jazz ensembles perform, invite their own following. By selling raffle tickets, we raise money and awareness for music therapy.  Each one is awesome in its own right, having a different flavor depending on the crowd and tenor of the band.

I'm biassed obviously, but the last one of the season is special because it puts our mission into 3-D. Kids--with autism, who've grown up with music therapy--are up on stage rocking the casbah in order to raise money so kids like them, but younger can get the same benefits. Innately, they demonstrate our mission better than any board member could articulate it. They embody the mission. It rocks!

So, this tongue-tied board member hopes you can see from the pictures what took place. A community turned out.  Their were so many webs of connection between the audience--from church from Miracle League baseball, from the chiropractors office, from Capernaum.  Everyone knew somebody. That made for a receptive, encouraging environment.  Nervous as they were, the boys had the crowd whether they remembered the lyrics or sang off key.  Dancing in the aisle and hooting was encouraged.  We--because I include myself in the bunch--were like a bunch of college freshman having our first beers at a frat house. Crazy and carefree...

The paparazzi rivaled a royal wedding. In addition to the professional photographer, Stacy Bostrom, who volunteered (her portraits of kids make me drool), there were 3 videos rolling, a couple SLR's, and every iPhone in the place. Again, whether they kept or missed the beat, this was going down in history. Note: these pics are from my phone; hers will follow.

By the time the second set came around, our partner sorority Alpha Xi Delta had collected $400.  The Kingsmen took the stage and brought it home. Reid took the announcements from there. As front man, he has developed a comfortable schtick telling the audience where else they perform and what he likes best about being in the band.  On a roll this time, he even gave the last call for raffle tickets and said, "we messed up" when one of the songs had a false start.  No worries, they are seasoned performers. One comrade mom who has known Reid since our boys were kindergartners riding horses was mesmerized, "I don't think I've ever heard Reid speak." Such is the transformational power of music--and the stage for him.

That's when I saw it. On the overstuffed loveseat sat the entire Dudes' Slamband squished together, almost on each other's laps. The four of them, elated their set was done, watched every move The Kingsmen made.  Wielding drumsticks in the air, they copied unabashedly showing us how mentorship works. Never mind the local pros, The Kingsmen were mentoring them--modeling how it's done--breaking down the next steps--showing rather than telling what it is to be a band.

They need to have an encore ready next time, for they brought down the house!  Everyone wanted more.  Adrenaline rushing through his veins, Reid broadcast to every lingering fan, "Mom, I did an awesome job! That deserves a treat." He doesn't need a microphone.  Once home, he remained on top of the world spouting off another historic one-liner: "Mom, I DO wanna do more gigs. When's the next one?"  The thrill of living one's destiny feeds on itself and can't help but be passed along.

This from the boy who hours before didn't want to go. No one would have guessed how nervous he had been beforehand.  I hope he doesn't remember either:)


Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,  Hebrews 12:1-3


What I mean is this: One of you says, “I follow Paul”; another, “I follow Apollos”; another, “I follow Cephas ”; still another, “I follow Christ.”  1 Corinthians 1:11-13

Drawing Strength from Testimony

Each of these 30 minute vignettes produced by Joni and Friends Television will put your life into a new perspective. I particularly love the one titled, As for Me and My House, about Brian Doerksen's family. He is the singer songwriter who wrote several of my now-even-more-favorite praise songs. (Click on "Episodes" then scroll down.)

He and his wife have 6 children including 2 boys with Fragile X, which presents much like autism. Take time to be inspired by their testimony and glimpse into their tender family life. I particularly love the father-son shaving scene, perhaps because Jim and Reid are beginning to talk strategy on that rite of passage.

It is way belated to make this a Father's Day post, but it does remind me (as did similar scenes from Praying with Lior) of the unique resonance Doerksen's Faithful Father song has in describing God our Father. Coming from this humble man who is "forever faithful" to his boys, it is powerful to think of a God who is superhuman-ly able. What power and truth are in the words he sings..."for who you are, for all you do...from the moment my life began...you have been, you will be, certain as the rivers reach the sea, surer than the stars..."

And this clip of their son placing the final brick in Nehemiah's wall is a sermon in itself...



Yes! Thank you to the Doerksen's for sharing honestly all of who they are...modeling full inclusion...and proclaiming the truths of God through their questions rather than answers.

Oh the Places You'll GO!

This family has gone over the hills and far away, to love their son and come to a place of accepting who he is even if it means embracing autism. Many phrases come to mind, "Whatever it takes," "what we'll do for love," and the one I hear recurrently from well-meaning friends, "I don't know how you do it." There were days, many moons ago, that honestly, I didn't quite know how I was doing it either. But what the Bible says is true, God's grace is sufficient, and we do.

So go with me here, if the strength to do what God calls each of us to do--be it autism or any other life circumstance--is not our own but His, then it doesn't matter who we are, but whose we are. If we are drawing from the same source, then any one of us could do it if we had to. Which is now my standard reply to that comment, "You'd be surprised what you can if God calls you to it." God's immeasurable grace and riches are of infinite supply. Many of us parenting autism, find new reserves of energy, creativity, stamina, and patience because God has allowed autism in our lives. What's so bad about that?

I do not wish to perpetuate the myth that these far flung adventures have any credence or magic power in and of themselves. Whether swimming with dolphins, racing with horses, or listening ad infinitum with headphones, I think the true value is in the journey not the destination. The journey for the parents is one of learning to relate differently and to accept (not change) their child. The parallel journey for the child is to discover who they are and where they fit in the world and how to trust. Having to go to greater lengths to do this with children on the spectrum, many parents demonstrate over and over again that love is the greatest motivator.

Is there a more powerful example than the cross? For God so loved the world that He gave His only begotten Son, that whoever believes in Him would have eternal life. The Easter message is one of sacrificial love. Jesus, who is love, was motivated to go where no man has gone--literally to hell and back--to save you and me from a fate worse than autism.

When we do anything resembling that, whether by affording some outrageous therapy, homeshooling 'til we don't recognize ourself in the mirror, or driving illogical distances to a qualified therapist, we are following Christ, sharing in his suffering, and becoming more like Him. Go ahead and spill yourself out for someone you love; you're in good company even if the world doesn't understand.

The book, The Horse Boy was released April 14th. The British family is described here in an article in the Telegraph and the trailer of the subsequent movie as well as the movie website here. Their journey makes a fascinating story. Admirably, the family has taken the proceeds of the book and started The Horse Boy Foundation and ranch outside of Austin. If you go there, know that you take your own therapists, your own child, and do your own thing with their horses and premises. They don't have a magic bullet or even much staff; you must come to your own terms with God's own will for your own life and family. No one can do that for you.

Don't all run off to Siberia or Austin, but do lend an ear to your child's unique pulse today and tune in to how God is calling you to love.


Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. 1 John 4:6-8


There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. 1 John 4:17-19


As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received. Ephesians 4:1-3


The one who calls you is faithful and he will do it. 1 Thessalonians 5:23-25

Roller Coaster...of Love

Today's New York Times has an honest, positive, and well-rounded article by Annie Lubliner Lehmann whose book, The Accidental Teacher: Life Lessons form My Silent Son, we will all have to read.

The title of the article, "A Roller Coaster to Acceptance of A Son's Autism," caught my eye because it was the very same metaphor I used to describe our adventures in autismland to a group of mothers of preschoolers (MOPS) recently. Their theme for the year is Adventures in Motherhood and each month's speaker was asked to orient their topic around a theme park ride.

Here's an excerpt from my roller coaster talk:

My house, and I’m sure some of yours too, has “never a dull moment.” Toddlers and preschoolers are by definition “on the go” which makes for an abundance of activity and unexpected surprises.We had a favorite song when my kids were preschoolers, a Scottish folk song by Bonnie Rideout. “Oh such a Hurryburry , oh what a din, oh such a hurryburry our house is in,” it went. Just when I think those days are gone some craziness happens again.

My kids are technically teenagers now, 14 yr old boy/girl twins. My son, Reid, has autism and maybe some other labels if we wanted to pin them on him—OCD, bi-polar, ADHD x 10. You name it, he seems to have a touch of it. So the hurry burry goes with the territory. In many ways our lifestyle is still as unpredictable as yours with toddlers—we are still working on language development, social skills, turn taking, sharing, using your words, even potty training. Autism affects social, language, and behavioral development—so mastery of those skills will be a lifelong pursuit for Reid.

Just last Saturday, the hurry burry set in when a friend dropped by unexpectedly (Reid thrives on structure). As I walked her to the curb, another friend walked by with her small dog. Our big dog saw the little dog through the window, which spurred a barking frenzy. Since Reid has hyper-sensitive hearing, this brought on a screaming jag and an explosive reaction. Doors were slammed and a garage door opener thrown. I am grateful to have some pretty exceptional friends who understand when I yell BYE and suddenly bolt for the door to salvage the house before my husband blew up too. Sound familiar? This is not unlike what you do with toddlers when you get off the phone abruptly, “gotta go” because of a loud noise from the other room.

I tell you all this not to bash my son or complain-- but simply to establish why I chose the roller coaster as my theme park. Most roller coasters start with a very long twisting line.

Our experience of parenting started with a very long wait –7 years of infertility followed by the twists and turns of adoption before…in total ecstasy we finally adopted TWINS—a boy and a girl no less!

Around 18 months, I had a gut feeling that something was not quite right with Reid and began asking questions of the pediatrician…wanting to be told that it was nothing. I raised every red flag on a checklist of autism symptoms.

Can you picture those hard, full-body restraint seat belts they lower over you and click into place when you get in a coaster car? That’s what it felt like when Reid was gradually diagnosed with autism around 3 years old. With no choice in the matter, we initially felt trapped, stuck, a little tricked by God, and like surely we were going to die.

Thus began the steep ascent up the first hill. We white knuckled it up every hill climb and blind turn, telling ourselves I can do this, freaking out inside, trying to fearing the future, trying to silence our second thoughts and all the "what ifs".

The slow, click, click, clicking sounds of the machinery remind me of how painstaking it is for Reid to master every new skill and developmental milestone . You can practically hear the gears turning in his brain and feel the traction that’s required to do what seems so simple for everyone else—utter a sentence, throw a ball, tolerate clothes on, blow out a candle, ride a 2-wheeler, tie his shoes.

Then the coaster goes into that free fall and drops-- along with your stomach.

Everyone around you is screaming; air is whooshing and machinery sounds seem to be turned on full blast. Reid’s body is often out of sync. He has a myriad of sensory integration issues. Background and foreground noise are one in the same for him. He hears fluorescent lights and I believe the neighbor’s television sets. When he is on overload, it becomes our reality as well. One thing can lead to another in rapid succession then, and there is no way to get off the ride.

OWHH! Then along comes a sharp turn. Your neck jerks and you are thrown around. For us, this happens when there are problems at school. We’ll have to find another one. Or when the daily phone call from school includes an “incident report” or “problem behavior” documented for the record. Turn after turn. Hang on!! When will this end?

(Can you tell I don’t like roller coasters?) Here’s why I think God allows them…or what I’ve learned about God from the one I’m on!

First thing I’ve noticed about coasters—even from the ground level where I usually just sit and watch-- is that even the people who love them, mostly love them at the end. When they are over. Waiting in line, they’re scared, anxious, tense, and insecure. It’s not until the final braking and coasting into the station that the smiles form across their faces. It’s only when they’re de-boarding the vehicle—taking all your belongings with you—that they say, “Let’s do it again!”

1 John 1:4 says “what we have heard, what we have seen with our eyes, what we have looked at and touched with our hands, we proclaim to you also, These things we write, so that our joy may be made complete.”

Our joy does tend to come at the end. God’s seems to indicate here that our joy will be complete at the end of the ride, not necessarily at every climb and twist and turn along the way.

Secondly, God doesn't leave us alone. I can count on one hand how many coasters I’ve ridden. One was at the Del Mar Fair. My daughter reallllly wanted to go on one. No dad around. You can’t put an 8 yr old on one of those rickety rides by herself so, I had to buck up and do it. In total self-sacrifice and protection, I said yes. I didn’t ride that one because I wanted to, but because she asked me to! I don’t think I would be on this ride-of-my-life if God had not asked me to take it. And, moreover, He goes with me, which really does make it all OK.

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:5-7

Another time I found myself on Space Mountain in Disneyworld. The only thing worse than a fair roller coaster is one in the dark where you sit single file! This time we were with courageous boy cousins and a grandfather who pressured Allie and I into taking it. Papa Jim, her grandfather remembered it (from 30 yrs prior) and assured us it was very tame…nothing really. Well, we believed him until we entered the first dark tunnel. It was not tame! Allie was mad. She won’t trust Papa again…at least in theme parks.

Lastly, God doesn’t betray us. He clearly indicates that there will be trials along the way: in this world. He doesn't want us to be surprised; he doesn't talk us into things, He talks us through them in His Word.


"In the world you have tribulation, but take courage; I have overcome the world." John 16:33


"Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing" 1 Peter 4


"Just think—you don't need a thing, you've got it all! All God's gifts are right in front of you as you wait expectantly for our Master Jesus to arrive on the scene for the Finale. And not only that, but God himself is right alongside to keep you steady and on track until things are all wrapped up by Jesus. 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 1:6-8 from The Message

Hide or See?

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

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




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

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

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

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

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

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

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



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


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


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

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

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 123:2-4

photo credits: www.geekroar.com, www.theraproducts.com

Perpetual Motion

A professional dance company called dre.dance, has choreographed a new work, beyond words, which premiered in Wichita recently. JoyMama at Elvis Sightings shares her dad's impressions of it. It was favorably reviewed in the Wichita Eagle. And also in more detail at Taking the Scenic Route.

How cool to see the performing arts using autism as a theme--building acceptance and awareness in the process. I am filled with admiration and curiosity about this company and their choreographer. Here is a clip of them instructing a group of teens with special needs. Apparently, they have taken the cause to heart and are gifted in using their own talents to develop others. Another apprenticeship model.




Dance dance dance! Do all kids with autism love to dance? I know Reid does. It is one of many behaviors that was sooo cute when he was younger and sooo not at all cool now that he's a teen. Bummer, because people merely watch him and get energized. Turn music on and he's bustin' a move like none you've ever seen.

Boys need to move to learn. I love the work of Carla Hannaford (Smart Moves: Why Learning is Not All in Your Head) and Cecelia Freeman (I am the Child) who support movement as a requisite way to switch the brain on for learning. The freedom of homeschooling allowed for lots of purposeful movement in Reid 's early years. Interactive metronome technology, which we did during the try-it-all hey day of his early childhood, is basically keeping time with hands and feet to a recorded tick-tock sound. Only, it's not that fun and lacks any significant social interaction.

Once he had completed the IM protocol, I made the giant mental leap of transferring those skills to tap dancing--which is really fun if you wannabe Gene Kelly and are obsessed with the best musical of all time, Singin' in the Rain. Having landed on a fantastic, local, male teacher who was up for it, Reid began his brief stint as a hoofer. It was a grand couple months of percussion with the feet and building a relationship with Louis. In his imagination, Reid was Donald O'Connor, the talented ham. And Louis was Gene Kelly, the rugged, masculine, athletic dandy with all the moves...and mirrors surrounding them so they could watch themselves. What could be more thrilling?!

I have to include this clip of Moses Supposes from Singin' in the Rain. For one, it offers a Biblical tie-in. And, who among us wouldn't love to do this with one of those district stick-in-the-mud speech therapists?! Telling the articulation coach to take his long a vowel sound and ----- it! in the nicest way possible.





Reid did this all by himself once, a long time ago. At about 5 years old, he was upstairs in our little "office classroom" with a speech therapist from the district during his preschool home program days. She told him, "only one more time" of some torturous game and then he'd get to do...x y z (whatever preferred task was the reward of the day). Well, it is one of my favorite recorded moments we have on video. His touche to the whole ABA discrete trail annoyance. He performed the obligatory one more time and doesn't she then say, "OK, now let's do this...," breaking her promise; making herself a liar; and ruining any trust Reid may have had in her. Under his breath yet clear as a bell, practically into the microphone, Reid said, "I'm not surprised." Then, he complied which is even more amazing.

One more on the same tapping theme, just for kicks! Snuffy and Savion in his younger days. (Don't get me started on Happy Feet.)





They send forth their children as a flock; their little ones dance about. Job 21:10-12


Then Miriam the prophet, Moses’s sister, took a tambourine and led all the women as they played their tambourines and danced. Exodus 15:19-21


David, wearing a linen ephod, danced before the LORD with all his might... 2 Samuel 6:13-15

Face to Face

Casdok, aka Mother of Shrek, has created a new blog. Faces of Autism is an online photo gallery celebrating individuals on the autism spectrum. Check it out and add yourself, your loved one, or look for Reid! He is indeed, impossible to capture in just one photo but the one I picked does lay claim to his gregarious sociability with strangers and exuberant joy. He loves music and loves the Lord, so that day at the House of Blues' Gospel Brunch put him in his element. No qualms at all about posing with those buxom ladies! Or joining them up on stage for that matter--next time.

Casdok's ever positive and constructive outlook reminds me of the verse Jim and I chose 22 years ago as a reading in our wedding. It is the origin of all positive thinking, self-help strategies that have followed.

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Philippians 4:7-9

The practice of this verse has followed us through life by necessity. It is both fascinating and faith-building to realize how that has happened. We chose the verse at 20-something, completely naive of what particular trials and tribulations would become our life's journey. As if prophesying the twists and turns that would characterize our future, the verse has become a mantra for the ride. God, not limited by time or space, saw fit to give us confirmation and a comforting sense of destiny as we look in hindsight at what we stood for, signed up for, and in fact, what he had in store for us, as a partnership and then as a family. What we could never have anticipated, He knew. And He found a way to speak it to us through His Word in the present then, just as easily as if He had told us, "This verse will come to define you..." or "You're going to need this one." Or "Listen up, I'll give you a little hint."

Here's another example. When attempting to adopt, Jim and I wrote a sort of resume, as was protocol, about us as potential parents. We sent it to hundreds to make our desire known and hopefully meet potential birthmothers. At the bottom of that letter, we added this hopeful verse: "Now to him who is able to do immeasurably more than all we ask or imagine...to him be glory...for ever and ever!" Ephesians 3:19-21

Well....lo and behold, that verse came true literally, when we matched with a birthmother who was expecting twins! He had indeed, done immeasurably more than we had asked! Our thrill at getting the ultimate twofer--a boy and a girl--fueled an adrenaline rush that lasted at least 48 months. That was way beyond our wildest dreams and more than we would ever have dared to even utter aloud. God must have had a little chuckle, when we were printing those cover letters, knowing as He does, all that has ever come before and will ever come to pass.

Do you have a life verse? Is there a verse that follows you in a good or bad way? If not, claim one and see how God will use it in your life.


My heart says of you, "Seek his face!" Your face, LORD, I will seek. Psalm 27:7-9


Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. 1 Corinthians 13:11-13


The LORD make his face shine upon you and be gracious to you...Numbers 6:24-26

Tragically Funny

I have just discovered a new blog, Mama on the Edge. Mama Mara is hilarious and gut wrenchingly honest. I laugh until my eyes water at posts like The L Word at our House is Lithium and Anatomy of a Morning. The brutal reality of them convinces me on some days, that I am not alone, and on others, that it could be worse. I'm a little taken aback actually. What is it about tragic comedy that appeals? Is it just me?

Laughter is good medicine, all agree. Mara gives me a channel to tune into for a healthy release. I had a morning like hers where Reid and I were in a total stalemate while the bus honked at the curb. The internal pressure and helplessness of not being able to control his actions--namely, get him dressed and on the bus--has to go somewhere. Better to come out in laughter than in anger. It has been said, and regrettably, I can vouch that the worst kind of violence stems from helplessness. I just don't feel at liberty to express my rawest feelings. Inhibited am I. Mama Mara does it for me. She is an online surrogate where we can all do a little corporate ranting.

Laughter, especially at ourselves, releases us from all sorts of paralysis--pride, control and pure tension. Of course, if we're not laughing then we're crying. And that is way more debilitating and unattractive.

In Chicago, my personal year in the desert, Reid was diagnosed and my husband was gone Monday through Friday on business in San Francisco. Mind you, we had just moved from California for a job that was too good to refuse. In less than a month, he was basically commuting back there by plane, while I remodeled and listened to people ruin my life by speculating what was "wrong" with my precious toddler--out loud in front of my other precious toddler! Go figure. (I'm grateful it was not 40 years.)

I would alternate between crying myself to sleep on the couch and watching Mary Tyler Moore for solace. You get the connection? Picture Mary pitching that blasted package of meat in the proverbial basket. (I know it was a grocery cart.). Her undying optimism couched in cynicism and satire, made me laugh. Everybody sing, "We're gonna make it after all...du do dewt do...dute."

One of my favorite books is about a woman fairly trapped in the 50's with 10 kids, no car, and an alcoholic, abusive husband. Sounds like a masochistic tragedy until you read the book, The Prize Winner from Defiance Ohio: How My Mother Raised 10 Kids on 24 Words or Less. Written by one of the 10 kids, it is the funniest book I've ever, made all the better 'cause it's true! The mom, Evelyn Ryan, is a prototype of modern day mommy bloggers, maybe specifically, autism mommy bloggers. Her creativity, wit, and writing acumen lift her out of impending doom. She cranks out fabulous advertising jingles, enters them in the popular contests of the day and wins! She wins BIG, to the tune of paying off the mortgage and putting kids through college. It is a tragicomedy filled with redemption, love, and hope. As always, the movie doesn't do the book justice.



Is there a tragicomedy in the Bible? Job is tragic but I'm not sure how funny he is. Reading Job makes most of us realize we have it pretty good (no leprosy, multiple family deaths, loss of livelihood). His lifetime of belief offers principles on how to get through the difficulties we all face in life--some for days, others for years at a time. Beyond Job, the Bible is laced with humor, real true grit, and way more hope than Mary Tyler Moore. God still considers David a man after His own heart, despite an affair on his roof and the arranged murder of the woman's husband (2 Samuel 11). Saul is taking a leak in a cave--do we need to know this?--when David cuts apiece of his robe but doesn't kill him as easy bait ( 1 Samuel 24). Sarah laughs in God's face (Genesis 18 ) to learn she is pregnant at age 90! Now, that's tragically funny.



A joyful heart is good medicine, but a broken spirit dries up the bones. Proverbs 17:21-23


Consider it all joy, my brethren, when you encounter various trials, knowing the testing of your faith produces endurance. James 1:1-3


He makes the barren woman abide in the house as a joyful mother of children. Psalm 113:8-9

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Boing Boing!!

A ringtone on my new iphone...yes. And also an old recording you should hear.

Reid, ever instructive, ever holding me accountable, has informed me that Carol Channing did not do the voices on Tubby but rather was on the same cassette narrating Gerald McBoing Boing. I stand corrected.

Certainly, Gerald deserves his own post. In fact, he is more appropo than Tubby, as you will soon see. Gerald is a toddler with no words. He makes only sounds like "boing boing" and "vrooom vroom." This was a problem for his parents (how well we know). His dad freaks out, then calls a pompous and fruitless specialist. Gerald survives ridicule in the social jungle of recess. The parents endure pessimistic prophecies from the school district. In the end, he falls into a niche and becomes the very best radio sound effects announcer that ever lived. Doing what he was born to do, Gerald (and his parents) enjoy thunderous applause, adoring fans, and public acceptance. I do love a happy ending.

Notice, Gerald McBoing Boing wasn't cured. He overcame obstacles and found his destiny.

Maybe the reason I like Tubby so much is that he was on the same cassette as Gerald. There's guilt by association...and greatness by association. Gerald and Tubby go together in my mind.




You are from God, little children, and have overcome them; because greater is He who is in you than he who is in the world. 1 John 4:3-5


Moses said to the LORD, "O Lord, I have never been eloquent...I am slow of speech and tongue." Exodus 4:9-11


Do not be misled: "Bad company corrupts good character." 1 Corinthians 15:32-34

Ohh Tubby...

Yesterday's Trombone Player Wanted film series reminded me of Tubby the Tuba, a favorite in our family archives. (I mean that black hole we call a garage.) Tubby is an animated tuba who comes to life in a song, book, musical score, and short film conceived during World War II by Paul Tripp. It has been performed by Carol Channing, Danny Kaye, Dick Van Dyke and others. I see it discarded in library basement book cellars but orchestras still perform it for family concerts. I can't figure out why it remains so obscure. To me, and fortunately my kids, Tubby rocks! He even has his own website.

After hearing it so many times, Reid does an uncanny impersonation of Carol Channing's peculiar voice. Whether consciously or subconsciously, something about Tubby resonated with him even at age 3. Of course, he responds to all things musical. I wonder whether he picked up on the underdog theme or the empowerment of embracing how God made you. Reid has developed into such an adroit critic of music and literature, that now we take his preferences seriously, as endorsements of quality. I love multi-dimensional resources like Tubby which instruct on so many different levels all at once: social skills, self-esteem, character building, and music education in a format that clicks even with young and language-impaired listeners.

You want the Cliffs Notes? Tubby is sick and tired of being a tuba. He longs to play the melody not just the oompahs from the back row. (Sound familiar?) He makes friends with Peepo the Piccolo and for a time, wishes he could sound like her (ie. play the high notes). Alas, he cannot. He is ridiculed by the rest of the orchestra, runs away, and meets a bullfrog who talks some sense into him. The wisdom of the bullfrog is that Tubby can only be Tubby and furthermore the orchestra needs him just as much as the piccolo or the french horn or the tympani. (No man is an island.)

Now, do you want to see the whole 9 minute movie?



Acceptance of our individual strengths actually honors God. Conversely, it can be a form of spiritual rebellion to wish we were different than God created us. I am much more healthy emotionally when I am content with my blue eyes, brown hair, relator strength and moderate house, than when I wish for black hair, brown eyes, a woo personality, and covet my neighbor's sporty convertible. Being content in who we are (and who our kids are) demonstrates that we trust Him. Trusting His Omniscience to know what's good, better and best is one way to worship Him.

Like Tubby, Jesus knows what it feels like to be despised, rejected, displaced, and undervalued. He also knew the value of a good story to engage and teach. His parables continue to challenge and inform for all who hear them.



He was despised and forsaken of men, A man of sorrows and acquainted with grief; And like one from whom men hide their face. He was despised , and we did not esteem Him. Isaiah 53:2-4

For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Hebrews 4:14-16


Not that I speak from want, for I have learned to be content in whatever circumstances I am.
Philippians 4:10-12

Now there are varieties of gifts, but the same Spirit...If the whole body were an eye, where would the hearing be? If the whole were hearing, where would the sense of smell be? 1 Corinthians 12:17

Children Do What We Do--to Siblings

I have a fuzzy but distinct recollection of a print in my house growing up of Children Learn What the Live not unlike the one pictured here. I associate it with my mom who was a teacher and with the values she upheld in our household. I don't know what ever became of that poster but apparently the original poem was written in 1954 by Dorothy Law Nolte and was later made into an entire book about parenting and imparting values. At first glance it may seem hokey, but whatever your aesthetic, there is undeniable truth in the verse.

Children of all ages do learn more from what we do as parents than from what we ever say. It is not coincidence that many of the parents blogging about autism from a positive, accepting perspective have children who in turn, are learning and articulating gratitude and acceptance of their siblings. Here are two examples.

S.L. at Stop Think Autism uses a subtitle I love: "Having autism is not the end of the world...far from it." Her older child made a lucky clover at school and filled in the blank that she was "lucky to have.... a sister with autism." Her post embellishes how it really is possible to have healthy siblings in the same household with our kids on the spectrum. What's impossible is to "sell it too well" as her husband jokes about promoting autism as part of their unique family culture.

We bought that very same book she references, My Friend Has Autism, and gave them out as favors at Reid's 7th birthday party for our friends to read. My feeling was always that the more family friends who embraced our entire family, the better off we'd all be. That meant less embarrassment for my daughter, more informed playmates for my son, and more adults to support my daughter in awkward situations. These were sure to arise since we were spending lots of time homeschooling and going on fieldtrips with these families. I really needed them to back me up and bolster my intentional attitude at that point.

Estee at Joy of Autism (which is a great title I wish I could claim!) shares an essay written by her 16 year old son in gratitude for his little brother who has autism. Among the same homeschooling families we saw so often when the kids were 7ish,

were some slightly older, typically developing peers who would come over for facilitated playdates with Reid every week. Using Pamela Wolfberg's Integrated Playgroups model, they were modeling social skills, turn taking, eye contact, and the pure pleasure of play. Looking back with 7 years of hindsight, there is no question those "expert players" who were willing or whose moms made them participate, learned more than Reid did.

One of them recently graduated from high school--now a big, strapping football player. In a senior essay he reflected about what he'd learned from helping Reid over the course of 2 years. He was the oldest in a family of four and set the pace for his next oldest sister and brother to move into roles of regular weekly playdates with Reid. The youngest in that family never got his turn, as Reid moved into an all day school setting. But, little Carson used to ask, "when do I get to play with Reid?" Caring, encouragement, praise, acceptance and tolerance (see the poem) were what those kids were living! Those were esteemed values in the Ward family...and left a legacy of confidence, appreciation, love, and patience in our hearts as well as theirs.

A friend loves at all times, and a brother is born for adversity. Proverbs 17:16-18


Teach them to your children, talking about them when you sit at home and when you walk along the road, when you lie down and when you get up. Deuteronomy 11:18-20


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

photo credit: farm4.static.flickr.com, oasisinternationalchurch.com, img.photobucket.com

Humble Pie

No doubt you have heard the recent buzz on ABC News about American Airlines removing a 2 year old passenger with autism and his mother from a flight. It has been well editorialized here at A Life Less Ordinary. Emily's moral of the story is basic: Do not touch another person's child without permission! I have two impressions. First, how easily it could have been avoided.

Second, how easily it could have been us. Just as Kristina Chew at Autism Vox shares, I have a "trove of near-horror stories" having traveled at least once a year cross continent since our twins were 6 months old. I recall the worst incident laying over in Reno on Southwest. A seatbelt stand off between Reid and my husband (not a flight attendant) who wanted it buckled NOW. (The plane was about to land.) I think a Sprite spilled and one thing led to another...before we knew it we were watching what could only be described as a full scale anxiety attack. The only differences from the Farrell's being, we were landing not taking off and we were in a front row so we could bolt off the plane into the terminal for some relative privacy. I will never fly anywhere near Reno again! Slots being pulled everywhere in pervasive smoke, I ducked into a corridor and waited until Reid could think straight. My husband and daughter, mortified by the gawking crowd, fielded questions from ground agents and officers.

In contrast, I recall being ushered by other travelers and personnel to cut to the front of the line getting through Customs in London. All could see that we needed to expedite the process or Reid was going to blow. It's not rocket science but it does take a little insight, flexibility, and humility.

To the current buzz I have to add this video dramatization. It is set within a sermon by our former pastor, Neal Nybo, at Solana Beach Presbyterian Church. The entire sermon on Humility is great, but if you are short on time go to 16:15 on the counter to watch another mother with her grown daughter to see what they experience in the air.

Please advance to 16:15 on the counter, to view the airline scene which is about 6 minutes long.

Each of us have the choice, fellow traveler, stewardess, mother, child. Which role will you play?

"Christ who...did not regard equality with God a thing to be grasped but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men." Philippians 2:6-7

" Whoever exalts himself shall be humbled; and whoever humbles himself shall be exalted. Matthew 23:11-13

Then the King will say, 'I'm telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.' Matthew 25:40

photo credit: betty.libsyn.com