What are we working for?

Today Children of Destiny's Turning the Tide calendar prompts us to pray for Teacher, Aides and Therapists (we've known a few) with this verse:

But as for you, be strong do not give up, for your work will be rewarded. 2 Chronicles 15:7

work for... reward.... Those are loaded words at my house!

Trained as we are in the ways of the autism world, I can't read them without picturing a PECS chart of possible motivators. "What will we work for today, Reid?" A video, piece of gum, or student choice....

From a tender age the premise can be established: tit for tat. You do what I want then, I'll give you what you want. It can quickly become a way of life.

After pooping on the seat or emptying the silverware, Reid's been known to shout, "That deserves a movie payoff!" And so his artful negotiation developed. Here's how ridiculous it can seem:

"You want me to do what? Three chores in a row? Compost, garbage cans, and silverware? What's it worth to you? Can we go to Target?

From the earliest days of our journey, this thinking smacked of no good to me. Oh! not that it doesn't work. It does...in the short term. Yet, isn't there more to parenting than compliance? Don't we want children for more than transactional accomplishments? Where is the love?

Given the choices we had (and have) as consumers in the autism market (which is a growth industry), I searched for what would be the right choice. Applied Behavioral Analysis or Floortime seemed the prevailing options at that time. The Bible doesn't give specific direction about autism intervention and the myriad of therapy choices, anymore than it does about spanking, but seeking the Holy Spirit, we have to glean what we can from related verses. And consider the character of God.

He didn't create people just to get the garden of Eden weeded. He wanted company walking in the cool of the day!

Early on in our journey, we visited Dr. Serena Weider in DC and pursued Floortime with a vengeance. This antithesis to ABA was revolutionary at the time. School districts wouldn't, claim they couldn't, do it. Therapists would only do it in a hybrid approach along with the more scientifically proven behavioral theory. To me, it answered the cliche WWJD question? If He were the parent of a kid with autism, what would Jesus do? Floortime is a vivid picture of what Jesus did (and does) with each of us.

He got down on our level, became flesh no less, to engage with us, entering into our humdrum lives even following our lead as Floortime instructs. He meets us at the well drawing water, or in the leper colony where we're stuck, or at the tax collecting table where we work...spinning tops or flipping lightswitches back and forth ad nauseum. Whatever holds our interest, he starts there and patiently uses it as a means to relationship with Him.

I can only think of one chart in Scripture: those Big 10 ground rules on the stone tablets. And when we broke them to shreds. He rewrote them knowing we couldn't keep them to the letter, anyway. He'd have to send His only Son, the only one who could. Yet he wouldn't send him to show off and go home with all the stickers. He sent Him as a servant to get down in the mud with us. It's by sticking with him, abiding in relationship that we learn how to really live. You see, He is the reward!

After this, the word of the LORD came to Abram in a vision: “Do not be afraid, Abram. I am your shield, your very great reward. ” Genesis 15:1-3

Surely God in heaven wants to give us the reward of being with Him for eternity. He doesn't force, bribe or coerce us into choosing it though. He gives us free will to worship Him, lift our eyes to His gaze, enjoy His presence. Like the most compelling Floortime player you could imagine, Jesus lovingly persists and hounds us and keep things just beyond our grasp in hopes that we will want to engage intimately with Him. It's why He created us in the first place.

And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. Hebrews 11:5-7

Do Tell....got stims?

Our beloved home program case manager, Danielle, taught me many things. She listened to the ponderings of my heart for many hours, "played guys" (Playmobil and Winnie the Pooh) with Reid several mornings a week, and trained more tutors than I can recount. Our front door was a turnstile of professionals and paraprofessionals who all delivered: early intervention.

Very early in my education, Danielle shared from her researchers' point of view that if all of us could be plotted somewhere along the autism spectrum (which ranges from normal to severely autistic), then we must all have at least one defining tendency or trait or ritual or stim. If we were honest. Once she confided hers, I was quickly able to identify mine. Over time this enables my empathy with others.

Danielle had a thing for counting the joints on door hinges in her mind as a diversion during meetings or in homes or whenever. I have the anxious, oddly pleasurable habit of running my fingers through my hair and pulling out individual strands like farm girls in Ohio used to do with blades of grass before whistling through them in their thumbs.

I will also confess to a word game of my own creation that I've played with myself since school days. Seeing signage or titles, I get sucked into sorting the words into symmetrical patterns of vowels and consonants. The invisible, consuming game continues until the entire word or phrase comes out even like a division equation. It's akin to diagramming a sentence only by individual letter rather than parts of speech. Hyperlexic much? Danielle's response when I described it was, "Yeah, that's one!"

Reid watches Disney, Pixar, and Dreamworks logo trailers backwards and forwards as if memorizing them in his head. He stops and starts the DVD action in order to get a still shot in his brain of each frame. Then in bed or in the car, he rocks his head back and forth which seems to aids in the playback of those memorized scenes. If anyone knows of a paying job for which this skill is useful, please do tell. Here's an all time favorite. Oh the thrill of watching that white glowy trail encircle the castle!

After reading A Slant of Sun by Beth Kephart in those same early years, my mom went out and bought a dozen copies for the extended family. Then she commented, "as I read about her son's fixations, I have to admit I do that too. It made me realize how much I am like Reid." Bear in mind we are a family by adoption so this is more than evidence of the genetic predisposition.

If you care to take this a bit more seriously, here is an online Autism Quotient test which indicates traits that constitute the autism diagnosis and also gives some idea of where you might fall along the spectrum.

Elvis Sightings gives an excellent explanation of the repetitive movements associated with autism. It may be "unproductive, obsessive, obstructive, annoying, consuming" but I know and you know that it is also"pleasurable, centering, meditative, regulating, communing."

Go ahead, do tell us in a comment one of yours...

People Who Need People: Autism Awareness Month-Day 4

Ahhhhhh........the sigh of relief that comes when you know your child is in competent hands. The shoulders drop and regular breathing resumes. I just carried a tutor's bags and boxes upstairs and came back down to hear their joyful laughter and productive movement through the ceiling. The assurance that for 2 hours, you can safely invest in some uninterrupted personal time is as much the value of the therapist as the therapy itself. The question is whether to zero in on Bible study homework, pay some bills, savor a cappuccino, or start dinner....hmmmm, what will it be?

So many caring and gifted teachers, aides, and therapists have blessed us over the years. With remarkable optimism, skill, and stamina they have deposited buckets and buckets of energy into Reid. An osteopath found it palpable once in an exam, "I can tell he's had some good work." Once upon a time, I took pictures of each hire and laminated them on PECS cards so Reid could learn their names and keep track of his weekly calendar. It's incomplete but here are a few I found. God BLESS them everyone...the saints of God...

April 4

Teachers, Aides, and Therapists

"But as for you, be strong and do not give up, for your work will be rewarded."
(2 Chronicles 15:7, NIV)

"Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain."
(1 Corinthians 15:58, NIV)

Pray that those who teach and provide therapy will feel successful and rewarded by the Lord for their efforts.

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

Underdog!

I like the thoughtfulness of this article by a teacher noticing her own lifelong penchant for the underdog. I often wonder (and usually inquire) what draws people to the field of special education. Although it is my passion now, I never would have predicted it would become so central in our lives before learning that it affected us personally. One of the first questions I have always asked professionals who work with Reid is, "what led you to this kind of work?" Partly, I am vetting their motives. Their response also reveals to me how they perceive their work. Is it education or mere respite care? What expectations do they have of themselves and of Reid to progress? Also, I am just curious what makes them tick.

Often, our very favorite professionals have had a sibling with special needs or some personal relationship that motivated them to enter the field. Their desire, skill, training, competence and compassion were born out of inclusion and a personal connection.

Hiring (and keeping) tutors can be difficult. Reid has always been a "challenging case" with his potent combination of smarts and behavior. He tests everyone who has ever tried to play or work with him. This served to increase the turn over rate at our place during the home program heyday. He still has a way of demanding the best of everyone around him as well as revealing their weaknesses. For the willing, he provided a rigorous continuing ed course. He could dish out every avoidance tactic, maladaptive behavior, and sensory issue in the book in one quick 50 minute clinical hour. I am grateful to be looking back on those days.

I would lay awake at night wondering, "What makes some people better at this than others?" (And how will I find more of them?) We had an eclectic program wanting to incorporate ample amounts of Floortime with the obligatory ABA. Following a prescribed teacher/student script of discrete trial drills can be taught relatively easily to anyone. Engaging in child-centered play as Dr. Stanley Greenspan advocated was another matter. It had to be caught. I struggled with Serena Weider coaching me to undo much of what my parenting model had been. My husband, who is far less inhibited and more playful to begin with, was more natural at it.

Three standouts in our own personal autism intervention history were Danielle, Carla, and Michelle. (I hate leaving out Ben and Angela and Becky but, they came along later.) So, can you tell already that I liked people who were willing to become family and blur the boundaries of professionalism in our best interest?!@# I refer to 'the good old days" of early intervention when our team included that triad who met weekly in my living room until Jim rolled home for dinner. I never felt alone. We had each other and plenty of ideas to put into motion. They had energy and we had money! Clearly, people motivated by challenge were ideal. Reid was not a sit-in-the-chair and parrot back trials kinda kid. As one educational therapist said of him, "He is a mover and a shaker who needs someone who can move through life with him." I liked her.

Carla came into our lives through the dreaded school district. Despite that entree, she and I connected immediately with a sister-like chemistry. I will never forget her first session with Reid. It was basically love at first sight for him as a preschooler to have this young, fun bubbly woman woo him into turn-taking, playing "guys" and singing songs together. Since we both have curly hair, I used to joke that maybe it was the curly hair gene that was the magic touch we sought when interviewing tutors. Could it be the years of managing unruly curls that pre-qualified us for excellence in autism intervention? (I obviously think highly of my own contribution to the team, don't I?) Being curly girls made us flexible, open to the idiosyncratic, able to appreciate the beauty of going around and around in circles in Floortime play therapy. We found the beauty in it, not the frustration. I loved to hear Carla tell my son, "I love the way your mind works." But alas, there is more too it than the dominant curly gene. After all, Danielle had straight hair and she was a (little-s) savior to us. Now with the benefit of Strengthsfinder, I see that I was probably seeking out others with the Achiever theme that Jim and I share and brought to parenting. Carla's Communicator and Activator themes were well suited too. Did you know Woo is actually a Strengthsfinder theme? Of course, she has that one too. Whew who!! Empathy is another theme to seek out when hiring especially for non-verbal kiddos. Imagine how helpful it is to spend time with someone who knows how you feel before you do and can prompt you with a handy English phrase?

In addition to Reid's maneuvering, our attrition was due to the eligibility of the crew. In short order, they all seemed to run off to pursue doctorates, marriage, or babies. Such is life...it gave Reid invaluable practice in the less popular social greeting: goodbye.

Reid's current case manager, the nicest guy you could imagine from the midwest, had just finished the military when his wife asked him, "If you could do anything in the world what would it be?" He replied, "teach." Good for him. Good for us. I have less time with him as they are outside my house now, so I continue to ponder what seeds were planted in his life that grew into the tireless, hopeful, consistent teacher Reid enjoys this year.

Here is one more article about a teacher who switched from regular ed to special ed based on her attachment and "falling in love" with one student. It happens all the time, see Kiara Brinkman the teacher who wrote Up High In the Trees and You're Gonna Love this Kid by Paula Kluth. Maybe the common denominator in extraordinary teachers is their genuine appreciation of each unique soul God has created as individual and different from the next as each seashell, each star, and each snowflake.


"He determines the number of the stars and calls them each by name." Psalm 147:3-5


"And in the church God has appointed...teachers, then workers of miracles, also those having gifts of healing, those able to help others..." 1 Corinthians 12:27-29


Then I heard the voice of the Lord saying, "Whom shall I send? And who will go for us?" And I said, "Here am I. Send me!" Isaiah 6:7-9


photo credit:www.movieweb.com