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

All God's Children

If you've never been in a room full of kids with disabilities, you haven't lived!

That wish may not be at the top your bucket list but, trust me if you ever get the chance it will tip your whole bucket upside down. Add music, worship or performance to that room and you approach an other-worldly experience that quickly becomes spiritual.

There is nothing quite so humbling or profound as watching people express themselves creatively without inhibition. I have had this experience a handful of times: at a Music Therapy Center recital, at Beyond Limits adult Sunday school class, and at the Young Life Capernaum Club Talent Show last June. Take a peek at what our friend Sean Horton captured on film.

Capernaum Talent Show from Sean Horton on Vimeo.

My experience must only begin to approach God's delight at watching us, his children--all of us differently-abled--using the gifts He gave us freely without comparison or ego or pride to adulterate them. It's pure and true to a liberating extent.

"Looks aren't everything. Don't be impressed with his looks and stature. God judges persons differently than humans do. Men and women look at the face; God looks into the heart." 1 Samuel 16:6-8

“To one he gave five bags of gold, to another two bags, and to another one bag, each according to his ability. Then he went on his journey." Matthew 25:14-15

Photo credit: Bill Wilson

P.S. You're invited to visit a Capernaum Club every other Thursday night at 6:30 at Flood church offices on Ruffin Road in San Diego.

Top 10 Tuesday

Top 10 Reasons to use Dignifying Language about those with Autism

(or any disability)

10. We are more alike than different

9. We are all disabled somehow

8. You likely love someone on the spectrum since it affects 1 in 95 children

7. You wouldn't want to offend someone in the room

6. We are all made in God's image

5. The Golden Rule is to love your neighbor as yourself; it's how you'd want to be treated

4. Words change our perception of others

3. People meet the expectations we set for them; your words impact another's identity

2. A person is a person; a soul is a soul

1. You have influence over others

Of course this begs the question: What is dignifying language? Kathie Snow at Disability is Natural has ammassed a wealth of articles here that define people-first language quite well.

John Tomkins work in developing Green Language is also excellent. Exploring his site for a couple minutes makes you mindful of your tongue in new ways. There are many ways to interact with his site, games for kids, and explanations of how our brains react to language and how words lead to behavior. We can all improve on this. And it's a matter of life or death according to the Bible.

Words are powerful; take them seriously. Words can be your salvation. Words can also be your damnation." Matthew 12:33-35 The Message

Words kill, words give life; they're either poison or fruit--you choose.

1. Proverbs 18:20-22 The Message

1. 
   

Kind words heal and help; cutting words wound and maim.

1. Proverbs 15:3-5 The Message

Top 10 Tuesday

Top 10 Trampoline Tricks

10. daffy

9. can can

8. pike

7. cannonball

6. emergency stop

5. cross crawl

4. running elmo

3. 480

2. dance dance revolution Kat style

1. deadman drop

Call it what you will: brainwork, proprioception, occupational threapy, sensory integration, pure fun! We are so glad we bought this used trampoline off Craig's list for a pittance. Having gone through 3 or 4 of the small personal ones, we now wonder how we lived without this large family-size one. (Well, I guess we're all growing in size.)

Currently, it is required before homework, before a video, before dinner, pretty much before anything. Something about the way Kat calls them, "knee drop: GO!" makes the tricks even more compelling. Novelty and routine in perfect balance, like peanut btter and chocolate in a Reese's.

31-derful Options

Leaving the psychiatrist's office with a new game plan (or rather the same one that I will follow more closely this time), Reid and I were early arrivals at Allie's bus stop. I decided to spring for a cookie, cinnamon roll, and iced mocha at the neighborhood bakery there. On familiar turf with the rarity of time to spare, the cloud lifted.

A song lyric rang through my mind...it's gonna be alright....

"Reid, who sings that song? It's gonna be...," I asked the master dj. Quicker than a Shazam app, he spouted back, "Sara Groves! It's on Add to the Beauty," then proceeded to sing the rest of the album. Just like Toucan Sam, he always knows.

Hope springs eternal. As the good doc offered, "If this doesn't work, I have 31 others we can try." Hmmm...that brings to mind another foundational hymn to bear in mind:

My hope is built on nothing less

Than Jesus Christ, my righteousness.

I dare not trust in (doctors or meds),

But wholly lean on Jesus' name.

Sing it with me now

On Christ the solid Rock I stand;

All other ground is sinking sand,

All other ground is sinking sand.

Parents Rule!

Kids drool? well, not exactly.

On an hour respite from a trying Thanksgiving weekend, Allie, Kat and I discovered these bracelets. We each picked a different inspirational mantra that suited us perfectly. They seemed custom made expressing our individual approach to all that life was dishing out in the moment. The serendipitous finding buoyed us through the rest of the day affirming our particular piece in the family puzzle.

Allie's says this:

Kathryn's said "Don't Settle for Less."

and mine:

Riding out a wave of medication, scary behavior, and holiday expectations had me feeling like the kindergarten Dutch boy with his finger in the dike determined to hold back the sea. Impossible and solely my responsibility. Now, Monday morning, I am grateful to run across this draft of a post which reminds me of parents who've gone before and Redefined the Impossible...a future for kids.

Check out Berkshire Hills Music Academy, an incredible post-secondary school in a collegiate setting for young adults with disabilities to pursue their musical passion. Living in dorms with support, they learn life skills and academics in a music-infused curriculum. I love the sound of that! And the fact that they take it to the streets and perform in the community. How did it come to be? Parents founded it. Out of necessity, no doubt.

Another example you may have seen last month in Wired, is of Thorkil Sonne, a parent, who formed an IT consulting firm in Denmark called Specialisterne that trains employers how to maximize the unique talents and productivity of Aspies.

My friend, Jody Mlynek created Logan's Friends to help churches around the country be more inclusive. Her business was born through her experience starting a program to serve her own son, Logan.

Do you know others?

In most cases, a parent has the greatest motivation to ensure his child's future. Many fabulous tutors and therapists have circulated through our home, but you know what? They keep leaving to get married, have babies, or get Ph.D's. We remain. I was feeling the weight this weekend of having the kid only a mother could love. It's heavy. And I do. Undoubtedly, parents have the strongest love and most relentless pursuit for their kids' potential.

Indeed, our Father in Heaven has an undying hope for our future. Since He created us, knows us best, and delights in each of us, He is absolutely the one most inspired to prosper us, see that our joy is complete, and give us hope. His is the best plan of redemption for our permanent future: not a special school but a mansion with many rooms awaits. He went to great pains to get us there. He sacrificed a piece of Himself to make it possible. He designed Plan B when Plan A didn't work. He never leaves us or forsakes us.

What a role model. Parents rule. God reigns!

The hired hand is not the shepherd who owns the sheep. So when he sees the wolf coming, he abandons the sheep and runs away. Then the wolf attacks the flock and scatters it. John 10:11-13

How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are! 1 John 3:1-3

For nothing is impossible with God. Luke 1:36-38

Introducing....Do Tell!

Sharing our stories can be a healing balm.

Jesus taught in stories. He also listened to people's stories even though he knew how they ended.

C.S. Lewis wrote, "We read to know we're not alone," which reminds me of my impetus to start this blog. I need to tell my story and I need to hear yours.

So, every Friday I am going to post a question that I reckon each of my readers can answer with at least one story. Be practical, be personal, be painful, be my guest by clicking "comments" and leaving a reply. I hope you'll begin to think, TGIF, I can tell someone!

I spoke on a panel last week for Ability Awareness Week at a local elementary school. It was awe inspiring to hear the other panelists and encourage the eager little faces to be tolerant friends to those with differences.

Another panelist was a school principal with ADHD who told her story of talking in class as a youngster, being docked points and eventually denied cupcakes on her own birthday. A mean, uninformed teacher had inadvertently fueled her life's ambition as well as given her ammunition to inspire students and teachers alike some 30 years later with a parable they'll never forget.

As the kids cleared out, those of us who didn't have a class to get to burst spontaneously into storytelling from our own childhoods and those of our kids. Almost refusing to clear the multi-purpose room, we were inspired, uplifted, encouraged and bonded by the resonance of our experiences, realities, failures, and solutions. We need this! And as I like to tease, "I don't get out much!" So, sit back, stay home, anytime of the day or night, and tell me this:

What autistic tendency are you most thankful for?

The Presence of a 1:1 Aide

Reid's school Talent Show was Wednesday. Horray! He transferred his musical skills to a new domain by auditioning, rehearsing, and performing without the aide of music therapist per se, but rather, teachers who are musical. The whole experience was a culmination of many goals mastered and an opportunity for the faculty to see a different facet of Reid.

Picture his solo of "People All Get Ready" by The Frames on a cavernous black stage all by his little lonesome in a glaring spotlight with his skinny knees pulsating rapidly up and down in panic.

He also did this dance number with his classmates:



Yes, I notice he is a whole head taller than the elementary age kids. Granted, it's time to transition him to the Adolescent Program upstairs. Clearly, he has the initiative of Aesop's fabled hare. Anyone can see how much loves the limelight! Not to mention, he can bust a dance move like none other. (Do I need to tell you he is the one on the far right?)

A spiritual point worth making struck me later that day. As I drove back to our "home district," it was dismissal time at the local elementary school. What a contrast to the footage I was excitedly viewing on my digital camera at a red light (living dangerously, I know). A host of schoolchildren congregated on the unprotected sidewalk of a busy artery waiting for two crossing guards to escort them 3 blocks safely under a freeway to residential streets beyond. The ratio had to be 40:2 at least.

I nearly gasped imagining Reid in that crowd with the inherent dangers of his impulsivity and sensory issues. What a "new normal" we have carved out for ourselves. Never could he exist, let alone thrive, in that size crowd.

Did you notice the ratio of adults (in the back row of the video clip) to students in the little troupe? With your trained eye, you probably recognize them as classroom aides. They are close at hand should anything go awry. It never does; for their mere presence ensures the kids' best behavior.

A reasonable assumption at Reid's school is that every student has significant behavioral challenges. Pleasantly surprised by their competence, my husband and I actually whispered in wonderment during the show. It's none of our business, but tempting nonetheless, to armchair diagnose his classmates. For this hour of time, it was hard to tell. Rest assured though, they are there with good cause and at large expense.

Classes are typically a 3:1 ratio with ancillary staff circulating as "problem solvers" on call and close at hand if required to intervene or enforce. Ever so gradually, they wean the kids off the dependence of the shadow aide they may have had in their referring school. Progress is measured by independence, self-control and functioning in a larger group.

What also impresses me (reviewing the video) is how little the aides actually do. Really they just stand there making their jobs look easy and planning to be obsolete. No verbal prompts, not much physical maneuvering, no big sticks, no PECS cards, no modeling hand motions, no hand-over-hand.

This is an illusion. The reality is they have worked strenuous, painstaking hours to get to this point. They've established their authority, consistency and expectations elsewhere. By May at the Talent Show, it is their presence alone that reinforces desired actions and appropriate behavior. Tenuous, but certain success.

Jesus was with us for just a little while on earth. He performed miracles and invested arduous hours in sandals teaching on the road. Then it was time for Him to leave. Now, even while He mysteriously lives in our hearts, it is largely dependent on us to tune into His presence. When I enter into His presence, I sense Him behind me, next to me, with me, leading me. That awareness keeps me on my toes behaviorally. Knowing He is close, elevates my thinking and aspirations. He holds me accountable silently without force. Just by being there.

What does being in God's presence mean to you? Would you leave it in a comment....



Even though I am not physically present, I am with you in spirit. When you are assembled in the name of our Lord Jesus and I am with you in spirit, and the power of our Lord Jesus is present... 1 Corinthians 5:2-4


For though I am absent from you in body, I am present with you in spirit and delight to see how orderly you are and how firm your faith in Christ is.
Colossians 2:4-6


God said, "Don't come any closer. Remove your sandals from your feet. You're standing on holy ground." Exodus 3:4-6

Who you gonna call?

The pack's all back! Even Benny our faithful mutt has a grin on his face. It just feels right to have Jim home after a 2 week absence. As we finished our GF waffles this morning, he and I got sucked into Facebook catching up on a new batch of our high school chums. Picture us in the zone, eyes squinting, fully absorbed in the glow of the screen. All of a sudden, Reid cried out in uncharacteristic maturity, "Mom, what are you doing?!" I looked up to see smoke billowing out from the sauce pan of maple syrup I'd left on the gas stove.

"Yikes! Good call, Reider." "You did the right thing to tell me." "You know what they say, where there's smoke there's fire." "That could have been dangerous." Reinforce, reinforce, reinforce. I did I tell you as I airlifted the blackened pot outside to the brick patio and instructed Reid to turn on the fan (whose noise he hates unless he flips the switch himself).


Are there any stranger events to celebrate, than the ones in which we rejoice? This was a good omen for future independent living ability; a sign of higher executive function; a reason to celebrate. I remember my similar elation the first time Reid got spooked to be separated from me at Target and called out, "Mom, where are you!" This morning marked a milestone. Who cares about the pot?

Several years ago Jim fell off a ladder while pruning trees. He was home alone with Reid at the time since Allie and I were walking the dog around the block. More alarming than getting the wind knocked out of him was the realization that Reid had not noticed his injury. Danger Will Robinson. Many times since we've wondered how to explain an emergency to Reid. Asked ourselves: does he know to get help? Could he describe what happened? Have we taught him about 911? All those "life skills" topics that aren't probably covered at school and don't arise often enough for repetitive teaching. Those critical skills required for independent adulthood.

After all the praise for doing the right thing this morning, Reid puffed out his adolescent chest and added, "we should call a plumber." Doh! Back to the curriculum to review those community helpers. It's all so confusing....police, firemen, AAA, plumbers. Who can keep it all straight?


Watch! Be alert! For you don't know when the time is [coming]. Mark 13:32-34

After the earthquake there was a fire, but the LORD was not in the fire. And after the fire there was a voice, a soft whisper. 1 Kings 19:11-13

Yet I call this to mind, and therefore I have hope: [Because of] the LORD's faithful love we do not perish, for His mercies never end. Lamentations 3:20-22

Free to Fly with the Wind

I am going to free myself up from my self-imposed template of length and structure for awhile, in favor of being more prolific and getting more posts out to you.

This story in the LA Times of a blind runner competing on a high school track team underscores the irony that in order to run with the chariots or really be free, we must in fact be tethered. Liberation for me, comes from being bound like an ox to Christ. When we submit to His yoke, our burdens lose their weight and we are finally on course. Read it and well up as I did at the beauty of her ambition and gratitude, the coach's resolve and resilience, the teammates' compassion and character development that are all perfectly woven together for good as the Father designed in advance. The story is also covered here in Breaking Christian News with a different slant.

It is for freedom that Christ has set us free. Stand firm, then, and do not let yourselves be burdened again by a yoke of slavery. Galatians 5:1-3

Interesting that like God, the runner knows each helper by name.

And the LORD said to Moses, "I will do the very thing you have asked, because I am pleased with you and I know you by name." Exodus 33:16-18

And how naturally inclusion flows out of the Coach Sramek's expectation of mutual respect and manners from his players.

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind? Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him. John 9:1-3

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: www.wholefoodsmarket.com, www.aolcdn.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

photo credit:  farm4flikr.com

Climb, Hike, Swim and Walk WITH Autism

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

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

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

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

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

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



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


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


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


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

Do What I Do

As I write, a finish carpenter is here building a handrail for our staircase. We have been living under the radar with a sub-code, high-risk staircase for several years. Point being, he's chatty and we got to talking about how there is currently a dearth of young people (at least in San Diego) willing to learn the trades. How is that done? Most often through apprenticeship. He has a young man shadowing him and is hopeful he'll stick it out and become one of the few, the proud, the master craftsmen!

Before being subject to extensive intervention and brainwashing about autism, we parented the way our parents parented us. It is natural to repeat the familiar. In reality, we apprentice our kids in their prayer life, faith disciplines, hygiene habits, driving practices, and eating preferences. We lead by example whether intentionally or by accident. My kids haven't had any sugar this week, because I do their shopping and I am abstaining from the unholy trinity of sugar, alcohol, and dairy this month. Are they upset? I don't think they've even noticed. How easily they adapt from our formerly frequent trips to Golden Spoon and Panera. My example (in this case, positive) becomes their familiar.

After his recent baptism, Reid was introduced with the New Member class at church. This involved walking up onto the dais with a group and being prayed for by two pastors. Reid loves to be in the limelight but was also appropriately nervous to do this "correctly." Anticipating the cue and blushing brightly, he stood behind the organ as the pastor made the invitation. Then in the bat of an eye, he scampered across the distance of the chancel to reach the other pastor who seemed more available (accurately reading his body language). Once there, they stood arm in arm in poignant solidarity. Since I was intentionally not assisting and letting Reid take this step independently, I was grateful for that pastor's presence, finesse and intuition.  He served as a literal and figurative anchor to which Reid could cling.

Now physically linked Reid, the senior pastor took the mic to pray aloud. He invited the congregation to raise a hand of blessing toward these new members. Well, bear in mind, Reid is in a weekly pattern for the last 3 years of listening intently and studying this man's preaching and leading style. He tracks him in the church bulletin, noticing who is responsible for the "Worship Focus," "Life Together," and "Prayer of Confession." As a result, those few moments of "being" the Senior Pastor thrilled Reid. He did what Mike did, raised a hand and mouthed the words along with him in a prayer welcoming new members. So much for Theory of Mind or pronoun comprehension or whatever it is that the other new members had which informed them to just bow their collective heads, keep their hands at their sides and receive the blessing! No harm done, Reid is a pastor wannabe! He is blessed.  AND he blesses other people ALL the time.

Another example of powerful role modeling is Peter Reynolds. As founder of Fable Vision, he has produced major media including all many of our favorite (albeit banned) pbskids shows as well as the some clever short films. A big kid himself, he travels to inspire schoolchildren with his true love of writing. He models storytelling, thinking creatively, and exhorts teachers to do the same-not to assign writing but to write and let the kids copy them. He does what he wants kids to do!



Even more on topic, check out this group in Toronto. Keys to the Studio, has paired professional musicians with students on the autism spectrum to experience and create music together. The podcast on their site is worth listening to, to hear their inspiration and mission to focus on commonalities, growth and doing one's personal best. In essence, they have created functional apprenticeships for young people who want to pursue music professionally. Gotta love it!



But prove yourselves doers of the word, and not merely hearers who delude themselves. James 1:21-23

You shall teach them to your sons, talking of them when you sit in your house and when you walk along the road and when you lie down and when you rise up. Deuteronomy 11:18-20

Now the boy Samuel was growing in stature and in favor both with the LORD and with men. 1 Samuel 2:25-27

photo credit:  www.davidblackonline.com, www.farm4flickr.com

"2 BY 2"

No sooner had I posted the article on Bittersweet Farms in Ohio than I received this one about the L'Arche community in Tacoma, Washington. Residents maintain a farm, create and sell products at local farmer's markets, and engage in meaningful relationships. They are a family group committed to a simple life and conscious of spirituality. Why does this ring a bell? After a bit of research and head tapping, I remembered. L'Arche is the place that inspired several of Henri Nouwen's books (one of which I read years ago before my interest in autism). He is one of the fathers of contemplative spirituality. While living with people with developmental disabilities, Nouwen's understanding of service, relationship, connectedness, faith and Christ-likeness was redefined. He writes about how he benefited from their presence.

L'Arche is an international network of 133 communities founded by Jean Vanier in France in 1964. The journal of Nouwen's year at L’Arche Trosly is captured in The Road to Daybreak: A Spiritual Journey. Another book, Adam, God's Beloved, is an inspiring account of how his life was transformed through friendship with a core member of the L'Arche Daybreak community in Toronto. I love the empowerment and inclusion that is integral to their philosophy; they are intentional about creating mutually beneficial relationship and developing the unique gifts of each individual. Amen to that! The L'Arche story is told in depth in this excellent 14 minute interview.

L'Arche means "the ark" in French. My license plates have read "2 BY 2" since my kids were a year old. The selection of these vanity plates is a triple entendre. I'm not sure the average passerby gets any of the three references. More than once, men have chuckled and commented on my plates thinking I am making an anti-4-wheeler statement, as if to say, "Awww that's cute...she only has 2-wheel drive." Little do they know, it referred to the lovely picture book we read every night at bedtime, Twins: Two by Two by Catherine and Laurence Anholt. Their whimsical illustrations of boy and girl twins (like ours) show them role playing various species: crocodiles splashing in the bathroom, kangaroos jumping into bed, and mice all curled up asleep. Memories...!

The 2 BY 2 plates were also a more overt reference to Noah's ark in celebration of our babies arriving as a pair. Our vehicle was decked with double car seats and life felt suddenly like an epic adventure. As it was for those boarding Noah's ark, we distinctly felt that God was intervening in Allie and Reid's lives. He was lifting them, as it were, through adoption, from one setting to quite another for reasons they could not understand.

Thirdly, 2 BY 2 is a Biblical reference to the way Jesus sent out his disciples. Never alone, always in pairs, they were sent to spread the good news. It continues to comfort me to know we are not alone either in whatever task he calls us to do.

So, the L'Arche concept resonates on many levels. Is there one near you? Has anyone had personal experience with L'Arche?


"After this the Lord appointed seventy-two others and send them two by two ahead of him to every town and place where he was about to go." Luke 10:1-3


"...they went into the ark to Noah by twos, male and female, as God had commanded Noah. Genesis 7:8-10


"Blessed are the meek, for they will inherit the earth." Matthew 5:4-6

photo credit: www.larche.org; www.anholt.co.uk

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