yeah, uhuh, whatever, go ahead

I picked Reid up early from school. We met Jim at the offices of an integrative educational specialist for an initial intake appointment. Had one of those lately? The encounter was awesome and admittedly atypical.

Jim tends to leave details and decisions like this to me, so it was not until we were in the waiting room that he mouthed (a little too loudly I thought), "What is this place? How long is this gonna take? and What do they do?" Classic!

I had already gotten a tour, met the players, and interviewed 4 satisfied clients. So, the organic, responsive, in the moment, alternative experience that ensued did not take me by total surprise. Jim had not. So it did.

His reactions crack me up. His humor afterwards illustrates how open-minded and fluid we've become. His mannerisms in the moment harken back to our common reference points. Where would we be without each other as bookends to hold up all that's gone between?

After 20 minutes in the waiting room (one broken photo album and a bent wastebasket later), Reid bulldozed through the door to scope this place out. Forget greetings or a potty break between appointments for the owner. Rather than block him or force a do-over with proper greetings, this purple clad female recognized his sensing curiosity. She immediately shifted from any protocol in order to follow his lead. Honoring the child, as they call it other places, she did what made more sense: treated him energetically.

We had expected her to politely grill us and review the ream of paperwork I'd dropped off beforehand. Instead, in short order, she had Reid and I both up on different massage tables tuning into Sennheiser headphones while she began Body Talk. (photo not actual size)

What about Jim? He had no idea what to do out in the hallway. I only peeked out the window once to see his dropped jaw and dumbfounded expression. The stereophonic rain and chimes sounded too good; the blanket on my feet too cozy to worry about whether he had gotten out his laptop or gone back to work.

After my balancing, I was terrifically calm, resonating with Reid on the comfy plum sofa. I could only grin watching Jim caddy corner from me in total bewilderment. He listened to the spontaneous specialist talk in intuitive circles, unable to nod or fill in her sentences. She may as well have been speaking gibberish. Later in bed, we debated whether he had actually spoken the words, "I don't even care," or just thought them.

Either way, our new friend had sized us up. These smart, engaged parents have been around the block. The mom is anxiety ridden. The dad focussed on results.

Bottom line: she won't make any predictions or guarantees, but she has complete confidence in her work. How long? How much? How often?How will we measure success? It can't be quantified. Finally, with a furrowed brow Jim did say outloud, "so, are we done here?"

Once we got home, he chuckled describing it to Allie as a "total twilight zone seeing mom in there drooling on a pillow." (exaggeration) At the same time, God love him, he is open to the value it may hold. Together, we are undying optimists hoping against hope to find the master key which will unlock the potential all agree Reid has in him. That is the unanimous common denominator that draws us back to each new specialist.

Oh Lord, it's hard not to be cynical when you've lost count of how many have claimed their work would be the bomb. The look on Jim's face told it all. What he wanted to do was hand them a list and say, "yeah, uhuh, we know...That's what they all say." "I'll call you when the results are obvious."

I don't blame him for I felt the same way. I suppose we want to be treated as colleagues for having acquired some knowledge along the way. Evidence of progress for all the time and money invested, would be nice. And acknowledgment, just for the record, that we are not starting at square 1 here; we are way into the double digits! So I wrote that list for Jim, in chronological order as best I can recall:

Occupational therapy

Speech therapy

Sensory Integration

Chiropractic

Nutritionists (5 come readily to mind)

Wilbarger brushing protocol

Integrated Playgroups

The GFCF diet

Applied Behavioral Analysis, ABA

Pivotal Response Training

Fast ForWord

Cranial Osteopathy with Viola Fryman and 5 of her proteges

Floortime training with Serena Wieder

Dr. Youssefi's GMS- SMI Institute

Pfeiffer Clinic

B12 injections

Auditory Integration Training

Samonas

Tomatis

Interactive Metronome

Music Therapy

Brain Highways

Brain Gym

Applied Kinesiology

Neuro-Emotional Technique, NET

Nambudripad Allergy Elimination Techniques, NAET

Neurofeedback

The Healing Rooms

Amen Clinic

and now....Body Talk

Parents who've been on this journey will surely understand what it's like to be held captive hearing suggestions you've heard before presented as if they are new under the sun; listening politely to the claims while calculating the hourly fees; feeling like "the sucker born every minute" on whom P.T. Barnum banked.

By now, I feel more like a battered wife returning yet again to be socked, disappointed, even burned, all the while wondering, just this once, if it could be different. Then choosing to go because, after all, you've got nowhere else to go. And you want so badly for the happy ending.

"Where there is no vision, the people perish." Proverbs 29:18

"Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it." Isaiah 30:20-22

Oh the Places You'll GO!

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

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

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

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

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

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

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


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


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


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


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

A Song for the Road

You already know I'm a Beth Moore junkie. With five close friends--made even tighter by our weekly commitment together--I just completed her Psalms of Ascent Bible study. Who knew? The specific Psalms 120-134 were ones the Israelites had memorized, like a "Road Trip" playlist on their community ipod. On repeated treks to Jerusalem for the annual feasts, the men, women and children had those short, catchy, rhyming psalms stuck in their heads as if they were top 40 hits. Take a listen to these renditions by messianic Christian Chuck King.

The Biblical word for road trip is pilgrimage. After updating and unpacking it, I have come to love the ring of that word. I am on a pilgrimage. And so are you! Whether through autism, through marriage, through divorce, through cancer, through illness, or through a chapter in life, we are all on our way to some place else. Heaven, namely. We are never stuck but always moving on toward some thing better.

Songs make the time go faster don't they? On an arduous car ride or a harrowing adventure. Songs do a whole lot more than that. Like the hunch that there is a God, almost all of us know innately that music has a power over our soul. All agree and yet, it remains a spiritual mystery how and why music empowers our communication and binds us to the otherness of heaven. Music assists us in entering the spiritual realm. Singing enables the expression of our soul. Songs release God's power. Jesus sang with the disciples. Song originated with God and accompanied creation. Song can change our perspective. I won't pretend to explain but merely to illustrate.

Colloquially speaking, we say that, "music tames the savage beast" whether we attribute it to Shakespeare in Twelfth Night or William Congreve in The Mourning Bride. I have seen this to be true. Years before his Abilify prescription (which has also served to tame the savage beast), Reid came home from a day to top all days at school. Possibly his worst ever. Honestly, I've repressed the gory details. Suffice it to say that those days often included reports of him under a desk, chewing his shirt to shreds at the collar, hitting a teacher, being restrained by staff members, being dreadfully uncomfortable needing to poop but unable to relax enough at school to do so in their restroom with its buzzing flourescent lights, automatic flushing toilets, not to mention other patrons. It was hellish. Some combination of those had accumulated. By the time I rolled into the carpool line, the teachers could only scoop him into the car. Time to recuperate. Wait, we were due home for piano lessons.

His lessons are pretty similar to the classic variety although he takes from a beloved music therapist of 8 years. Because of her training, who she is and their established rapport, the 30 minute session retains a therapeutic quality. In fact, it often takes on a certain magic. Anyway, I was ready to bail that day, send her home and forfeit the fee. I couldn't see how Reid would ever pull himself together to attend. He collapsed into the house, eyes still red from crying and disheveled from the ravages of his day. After some ineffective cajoling and sympathetic urging to get him to the piano bench from me, Angela simply sat down herself and played something. (If I ever write a book it will have to be fiction since so many relevant details escape me.) I think it was a praise and worship song, maybe something she was dusting off for church that Sunday.

Thus began a slow-motion scene from the movie of our life. Stilled by the music, Reid rose from the crumpled pile on the floor, joined her on the bench and after 20 minutes skittered out to the kitchen a new boy. Music had transformed his day from disaster to joy. His emotional tank was refueled for whatever lay ahead. Dumbstruck and speechless, I stuttered to Angela, "how...did...i didn't...do that...can't." Angela's response I do recall, "music tames the savage beast." She's humble and accurate. I started scheming a way to have her take up permanent residence. We need a live-in pianist.

Dr. Fryman, the world renown osteopath we were privileged to see, utilizes this pipe dream wish of mine in her San Diego practice. In her 90's and still treating infants, she has mentored nearly every young osteopath worth their salt. Her treatment protocol is incredible albeit elusive. Parents are consulted with but prohibited from accompanying their child in the treatment room. At first, this policy put me off tremendously. Anticipating Reid's first appointment with her I felt as if I was relinquishing him to a demented Oz behind a curtain only to wait in t he field of monkeys. Once I got to know her though, I appreciated the method to her apparent madness. She eliminates the triangulating that can happen with kids with behavioral challenges. In this intentional way, she can treat them more individually and without distraction. The kids quickly learn to trust her calculated, consistent, predictable routine and benefit immensely from each visit. Reid would emerge out of the corridor of her round building practically stunned by an epiphany. So deep was the transformation I could perceive it in his face, stature and dare I say, soul. Osteopathy is a holistic approach.

A large part of Dr. Fryman's effectiveness is her spiritual gifting and faithfulness. Another part is her understanding of music. She employed a concert pianist who accompanied her hands-on osteopathic manipulation with live classical music. She chose music that matched the energy of the child taking "music therapy" to a new level. As the treatment progressed, she would cue the pianist with a new composer or piece that synchronized with the patient and synergized her manual adjustment. I don't think I'm extrapolating to say that she was calling upon the powers of heaven through music to heal. Many miracles quietly occur in that place.

The Listening Program, AIT, Samonas, and many musical permutations are marketed as beneficial for our kids with autism. I am not endorsing any of those, nor one over the other. We have invested in several of them at different times. I am not certain their claims are valid, provable, or worth niggling over. What they do all indicate though is that music influences our brain function.

Can you add a little music to your life today? Open yourself up to be healed, restored, redeemed. Marinade in some sound waves. Steep in a psalm.

This is what the LORD says: "Sing with joy for Jacob; shout for the foremost of the nations. Make your praises heard, and say, 'LORD, save your people, the remnant of Israel.'
Jeremiah 31:6-8



"The LORD your God is in your midst, A victorious warrior He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy. Zephaniah 3:16-18



You are my hiding place; you will protect me from trouble and surround me with songs of deliverance. Psalm 32:7

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

Alive in Christ

OK, here goes. I have waited a week to post about Reid's baptism for several reasons. One is pure exhaustion from being overwhelmed by it all. I also hesitate in fear that I will be unable to retell the magnificence of the day. I don't want to trap the spiritual splendor in words on a page or in my feeble recollection. I have been silent for a week even from writing thank you's to those who made it so sacred in an effort to sustain the reverence and (if I am honest) out of speechlessness. Have you ever had an experience that was so sublime you wanted to keep it to yourself lest the reactions of others deny its reality?

The man without the Spirit does not accept the things that come from the Spirit of God, for they are foolishness to him, and he cannot understand them, because they are spiritually discerned. 1 Corinthians 2:13-15

However, I wouldn't be a very good blogger or a very good witness if I don't "go tell it on the mountain!" Even if I don't "joyfully praise God for the miracles I've seen...then the stones will cry out!" Luke 19:39-40 It was truly glorious! Just know, whatever I say pales in comparison and you really did have to be there to experience the palpable glory of the Lord. I feel like Mary when she "treasured up all these things and pondered them in her heart." Luke 2:18-20

First of all, nobody stripped naked (did you read the "before" post?). What impressed me most was Reid's total engagement and appropriateness. These are lifelong goals for us which seemed for one sitting to be suspended in accomplishment. Granted, Reid loves a program and was prepared for how this would go. But somehow it was more than just a "good day" as measured by compliance, engagement, and behavioral goals.

There were guests from Reid's sphere who had no idea of his functioning. Whether they hadn't seen him lately or they've only seen him glued to the television set in the church library, Saturday was eye-opening. Some were in tears. Some were flabbergasted at his ability. Others who've been in the trenches with us and spent hours of time interacting with him and seen the glimmers of skill and development over time were not amazed at any one skill but at how they all coalesced like jello hardening into one grand presentation.

One of the 30 some eyewitness guests said to me, "Wow, Reid really 'gets' this." As his statement of faith Reid wrote a song with his music teacher, Angela Neve. The song served as testimony and sermon all in one. There was no mistaking his comprehension. What struck me was how obviously Reid's ability was displayed throughout the day. He demonstrated ability to sing, ability to lead a group, ability to grasp fundamental truths, ability to greet each guest and express gratitude for their presence, ability to share his faith, ability to take a break in the Eurovan with new gifts, ability to change into dry clothes we'd left in the van, and shocking ability to return to the party for more photo ops, ability to transition back into the Saturday routine with Dad once the party was over, ability to delay gratification and go to library after clean up, ability to help us set up and unload the van, huge ability to submit himself physically to be dunked backwards into waves, ability to regulate all the sensory and tactile input, ability to ask a guest if her husband was with her, ability to be a blessing to others, ability to have a ministry, ability to chose his own destiny for eternity.

Depending on how long you have known Reid or what other firsthand experience you have with autism, that may seem like a simple list. To put it into drastic context, this is the same kid who was basically evicted from special ed class as a danger to other students just 4 years ago. This is the same kid who streaked naked toward the intersection of Executive Drive and Genessee Ave. from a pool locker room just 8 years ago. This is the same kid who is obsessed with doing things himself and only let me hold his hand once as a toddler. Are you getting why I'm speechless?

Let me be clear; this isn't a sensationalized story promoting any of the myriad interventions that you could run to pay big bucks and afford for another child on the spectrum. It is not an infomercial for secretin, AIT, The Listening Program, music therapy, hyperbaric oxygen chamber, megavitamins, homeopathy, osteopathy, chelation, GFCF diet, DAN! protocol, Brain Highways, Floortime, PRT, ABA, or swimming with dolphins--although we have done most of those. Rather, our success story is first and foremost a testimony of what God has done in our midst. Ours is a story of staying the course, marinading in prayer, and the cumulative gain of multiple people pouring their gifts and love into a boy who is truly "growing in wisdom and favor and stature with God and man."Luke 2:52

Fourteen years ago when we were hoping to adopt we put this verse at the bottom of our solicitation letter. Ephesians 3:19-21 says, "Now to him who is able to do immeasurably more than all we ask or imagine...to him be glory...forever and ever." That verse has followed us and becomes more prophetic as we go. It rang true when we adopted not one but two babies. It continues to resonate as we move through autism. Ironically, the song which came to me in writing this seems drawn from that verse too. Terry Clark recorded it and it sums up my take home truth from the Reid's baptism. He is Able.

We have ability because God is able. We are creative because He is the Creator. We are loving because He is love. We are truthful because He is the Truth. We are made in God's image however weakly we pale in comparison. Any among us gains functioning when we are in His presence, when we abide in Him, when move in His Spirit. I saw that happen dramatically for Reid on Saturday and I've seen it happen gradually over the course of 14 years.

If you have a child with special needs, I challenge you to make a list of your child's abilities. You'll amaze yourself....and it will increase your faith. "Oh ye of little faith" was all I could think when I first sat down to write about the baptism. That verse is repeated by Jesus four times in Matthew. Usually, it is after a miracle God performed--multiplying loaves, walking on water, and then calming the storm. It is the phrase to use when amazed anew at God's power over the earth, the elements, the circumstances of our lives and our hearts. How fitting. I cannot believe what God has done in Reid's life....and is continuing to do.

"But if God so clothes the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more clothe you? You of little faith! Matthew 6:29-31

He said to them, "Why are you afraid, you men of little faith?" Then He got up and rebuked the winds and the sea, and it became perfectly calm. Matthew 8:25-27

Immediately Jesus stretched out His hand and took hold of him, and said to him, " You of little faith, why did you doubt?" Matthew 14:30-32

But Jesus, aware of this, said, " You men of little faith, why do you discuss among yourselves that you have no bread? Matthew 16:7-9

photo credits: Doug Miller, Carla Wood