Wednesday, October 29, 2008

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

Do you share my age-old dilemma of how to motivate fill-in-child's-name-here?  What do I need to do to get him to do what I want done? What reinforcer will be motivating this week? What behavior of mine do I have to change to impact his? Should I do what the experts suggest, what the specialists promote, what I'm good at, or what works?  And what does work? In the end it seems, all of us resort to some sort of chart. Can I tell you something? I have grown to hate them.

Reidy has an Achiever strength by all measures. Still I wonder, at what point will he--will he ever--be intrinsically motivated to do his personal best? Will he always need the proverbial carrot?

We had a private teacher at home for awhile with Reid.  At the time, she split her time between two boys on the spectrum who could not be more different, despite carrying the same label. Becky had to dramatically alter her incentive and motivation plan from one house to the next. This made me feel better about my homeschooling tenure. If it wasn't obvious to her, then I hadn't been so stupid to have missed it all those years before.  For one of her students, the ultimate fire under his tail was her simple statement, "alright, if you're not going to do your work, then I will have to call your mother."  I was amazed to hear that was the extent of her strategy (and concerned that she might not have enough tools in her kit to handle what Reid was dishing out at the time).  What a stark contrast to the hoops we'd jump through to get my son to simply come to the table, let alone put his name in the right hand corner!

Completely different personalities, same diagnosis (didn't I just write about this?).  One boy is a rule follower; mine is not.  Mine is a boundary crossing, envelope pushing, rule breaker. Draw him a line, he jumps across it.   Give him a threat, and in the immortalized words of Clint Eastwood, he'll make your day!

So, my darling boy is no longer homeschooled, nor does he attend the touchy-feely, "work with me, not on me" holistic school of my original preference.  In order to make some quantifiable progress, he now attends a highly-structured, scientifically-based, "behavior mod is our specialty" school.  Not a pretty picture always.  Let me tell you what I see there: a lot of charts!!

My sadness is not that I can't help in the touchy-feely school's library (although I miss that). My greater concern is actually a fear that we are, in fact, solving a short term problem at the expense of his long term potential.  Evidence like Alfie Kohn's books, Punished by Rewards, Unconditional Parenting and many others, hook me in and haunt me.  I am perpetually having to discern whether they resonate with me because of my own school experience or fit Reid's. I often feel trapped by his behaviors, with no choice but to use what is "proven" which is precisely what Kohn lambasts.  Is there room for his alternatives in the autism realm?

Remember Summer in the movie, School of Rock?  She is the over achiever, class do-gooder who needs to be in charge. She does not have autism, but she sure does like sticker charts, gold stars, and rewards.  After the shake up of Jack Black's arrival as a long-term substitute teacher, she begins to loosen up and find different reasons to achieve.  As he implements his highly unorthodox brainstorm to turn the class into a rock band, he assigns roles to each student. Since Summer is not particularly musical, Black makes her a groupie which will never do.  

Parenthetically, I made a similar mistake recently. Attempting to rally support and organize our posse of moms at one of the Kingsmen performances, I said, "we'll be groupies." Well, the aghast look on one of the moms faces made me quickly realize, that is not what I meant! "I mean roadies!" who carry all the stuff and get them to the venue on time.  I was using the terms synonymously, which they are not. What do I know about the music biz? Apparently zilch.

After hearing Summer's appeal, Jack Black concedes to naming her the road manager.  This scene marks the transition for her between performing for the extrinsic reward and internalizing a motivation to simply do her best.  I love it and wish it for Reid.

I was a bit like Summer.  With my maiden name of Andrea Anderson, I grew accustomed to always being first in the alphabetical roll call and taking my assigned seat in the front row. I achieved my assumed aspiration of straight A's after my name.  I learned by rote and met the teacher's expectations. You might say I learned "to the test," but sadly, I don't think I ever really worked to my full potential.  There is a limitation placed by limitations.  Maybe that's obvious. We think limitations in school settings are there to promote effective learning but in reality, they can lower the ceiling on what is accomplished.  Whether or not behavior is not an issue, why can't the sky be the limit?

I suppose I longed for a teacher like Jack Black who, although unqualified by the world's standards and on paper, breaks free from the establishment. With raw conviction, charisma, and creativity he woos students into self-discovery and accomplishment. I find it refreshing that he doesn't care about appearances one iota.  He has a good heart even if all the wrong words. What could he do with a Special Day Class or a fully included student?  I'd like to see a sequel, School of Rock II: SDC.

Now it may seem sacrilege to compare Jack Black to Jesus but I am seeing a parallel. (Remember all analogies are flawed.) Jesus came and did not look or act like the kind of king the Jews wanted or expected.  He was scruffy, undistinguished, and from Nazareth, of all places. Yet, He changed their lives from the inside out.  He changed the old law and told them He was the Way.  No longer did they need to keep all their laws to the letter.  Now, simple faith in Him would cut the mustard. Following Him with genuine heart and soul and mind was a radically new expectation.  They were used to ticking off their checklists of complex food rules, doing a sort of negative token economy of sacrificing animals to restore favor, and charting offenses of themselves and each other. Jesus told them to throw all that out; it doesn't matter.  I want your hearts not your perfect, little, pressured habits and sticker charts!

I can't quite fathom how, but I believe one day in heaven an Almighty God will demonstrate the perfect balance between unconditional love, motivational strategy and reward structure. In His Word, He does mention jewels in our crown.  Certainly, eternal salvation is the ultimate payoff for accepting Him on faith. I have always wanted the Bible to make a clear case for either behavior mod or unconditional parenting, but it doesn't. It gives examples of both. Maybe, God wants us to walk with Him in prayer and devotion so He can personally advise us on the particulars for any one child at any given chapter of life.  So, ultimately He is our reward; when we realize that His unconditional love and presence lead us through any fog.

However, as it is written: "No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him"  1 Corinthians 2:8-10

Who has understood the mind of the LORD, or instructed him as his counselor?  Isaiah 40:12-14

But now, by dying to what once bound us, we have been released from the law so that we serve in the new way of the Spirit, and not in the old way of the written code. Romans 7:5-7

you, O Lord, are loving. Surely you will reward each person according to what he has done. Psalm 62:11-12

Love... keeps no record of wrongs.  1 Corinthians 13:4-6

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Tuesday, October 28, 2008

Introvert or Extrovert?

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

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

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

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

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

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

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

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

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

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

photo credits:,

Monday, October 27, 2008

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Wednesday, October 15, 2008

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

Saturday, October 11, 2008

Perpetual Motion

A professional dance company called, 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

Monday, October 6, 2008

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

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Wednesday, October 1, 2008

Dads Rule!

Dads are noticeably absent from many parent support groups as well as PTA meetings and carpool. Usually, this is for good reason; they are working! My husband pointed this out while I was whining once about his lack of presence at my daughter's daytime school socials. At the time, she went to a private school in an over-the-top, affluent, community neighboring ours. There, many dads were visible and apparently self-employed or independently wealthy. In autism circles there is another, sadder reason for the female-dominated landscape. It is estimated that roughly 50% of fathers with children diagnosed with ASD, leave their families, unable to handle the emotional strain.

Just yesterday at a birthday party, we watched a single mom run the events alone enlisting other dads to string up and repair the pinata. I don't know the particulars of her divorce, but can easily project the familiar scenario. It saddens me because I grew up without a dad (for different reasons). It smacks close to home to see the dynamic perpetuated. Without question, having a child with autism adds stress to a household and a marriage. From the early days of diagnosis and intervention, to the financial burden of therapies and advocates, to the emotional waves of acceptance and recurrent loss, to the onslaught of puberty and unanswerable questions about the future, it is just plain harder than anyone expects.

Mired with unprocessed loss, I think spouses can sub-consciously blame and punish each other for the predicament. Rather than get angry at the child or the disability or at God, they bicker with each other. If I am honest, there have been many stressful moments, explosive bickering, even years of distance between Jim and I. At the same time, I praise God for the rich rewards of riding the storm and choosing to weather it together. What seals our vows, cements our bond and validates our marriage are the trials we've overcome. To have thrown in the towel would have robbed us of the sense of accomplishment we now feel as well as the sense of wonder at how God sustains those who seek after Him.

Jim and I arrived at a benefit fundraiser years ago. Along the manicured pathways of the hotel property, were posted the most dire statistics one could find, about marriage and prognoses regarding autism. (It was not Autism Speaks.) I can't say we donated much money that night. Who wants to support (what was portrayed as) a sinking ship ? And who wants to pay the ticket price the following year to be depressed by statistics? The hopeless portrayal may have pulled at the heartstrings of those not directly familiar with autism. But for me, it served to alienate and anger me. "It's not that bad!" I wanted to scream from the podium, "I need to hear hope in order to survive!" We did secretly gloat a bit that we were "not a number." The night was salvaged with a game of ping pong when we spotted the husband-wife team who were our educational consultant and advocate at the time. Serendipity, for when else would we have planned a social event with such real life heroes? Through tremendous trials of their own, they have forged an incredibly productive partnership. That's how it happens: the hero's pattern of hardship and recovery, hardship and recovery.

Back to my original point: this Chicago dad, James Harlan, is doing something about to bolster dads in the trenches. His wife, Debra Vines, started The Answer Inc. to serve the Chicago area autism community. Noticing how few men attended, he started "Just for Men" a support group specifically for dads. Contrast the character of Mr. Harlan with our neighbor who once offered this unsolicited commentary on us to his wife, "If I were Jim, I'd leave her." Unconscionable, that he would feel justification for that, let alone express the thought out loud. (And why his wife shared it with me, I'll never know either.) I can only be glad Reid didn't end up in his home, but rather with a dad like my husband.

Another voice in the darkness is Erik Weber. I wrote of him earlier as he mastered college life. Now a college grad, he has written a book, Autism for Dads: The Importance of a Father's Love, which is being sold by the Autism Tree Project Foundation. Erik's dad died suddenly in 1997, leaving Erik to grieve the "loss of the perfect dad" in ironic counterpoint to what he says ails the majority of autism dads: the "loss of the perfect child." In contrast to the statistical evidence, Erik's father left a legacy of love and faith that remain a "beacon of light to illuminate God's path for him." He attributes his faith in God and his dad's example to empowering him to defy odds and exceed anyone's prognosis for him.

Jim has a tongue-in-cheek expression to sum up his legacy to Reid. "Must be all that ball throwing," he says, at once self-congratulatory and self-deprecating. Of course, Jim did teach Reid years ago to play catch with a ball and mitt. There was a time they would do ten obligatory throws before dinner. It was tedious, as all new skills are for Reid to learn. At the time, I was homeschooling and ostensibly doing more with Reid, like covering the 3 R's.

I guess that's what makes it funny. We know it's not really the ball throwing. In fact, the synergy of other efforts--the osteopath, the neurological exercises, the mega-vitamins, the OT, the PT, the speech, the therapy--are all making the ball throwing possible. Nonetheless, that is the one quantifiable skill for which Jim takes credit. He likes to imagine the ball throwing was the floodgate for every other positive outcome.

The phrase is employed still whenever Reid reaches some belated milestone, say riding his two-wheeler bike or setting the table independently. Jim sounds off, "Must be all that ball throwing!" He's even used it in an IEP meeting. When something positive was reported, he caught my eye and mouthed the words, "all the ball throwing." It has, thankfully, become his most macho way of patting his male ego on the back for being an engaged father.

Rather than baseball, it is care giving that physiologically energizes women. In the early years, I now see how I gave and gave and gave to Reid without really wearying much. It actually filled me up with purpose and envigorated me. (This is not how-to advice for your marriage.) In contrast, fathering is less about nurture and more about preparation. As Reid has reached adolescence, many of the emotions I had at diagnosis have reared their ugly heads again, but this time from Jim's perspective. It is recurrent loss mixed with fear of the future which is staring us in the face. All of a sudden the future is now. (Couple that with the fact that Jim is a Futurist on his Strengthsfinder inventory so, he lives there anyway.) It's all good. God made us male and female, male and female He created us.

So God created man in his own image, in the image of God he created him; male and female he created them. Genesis 1:26-28

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:32-33

So guard yourself in your spirit, and do not break faith with the wife of your youth. Malachi 2:14-16

If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!" Luke 11:12-14