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

Drawing Strength from Testimony

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

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

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

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



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

Oh the Places You'll GO!

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

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

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

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

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

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

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


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


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


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


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

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