Roller Coaster...of Love

Today's New York Times has an honest, positive, and well-rounded article by Annie Lubliner Lehmann whose book, The Accidental Teacher: Life Lessons form My Silent Son, we will all have to read.

The title of the article, "A Roller Coaster to Acceptance of A Son's Autism," caught my eye because it was the very same metaphor I used to describe our adventures in autismland to a group of mothers of preschoolers (MOPS) recently. Their theme for the year is Adventures in Motherhood and each month's speaker was asked to orient their topic around a theme park ride.

Here's an excerpt from my roller coaster talk:

My house, and I’m sure some of yours too, has “never a dull moment.” Toddlers and preschoolers are by definition “on the go” which makes for an abundance of activity and unexpected surprises.We had a favorite song when my kids were preschoolers, a Scottish folk song by Bonnie Rideout. “Oh such a Hurryburry , oh what a din, oh such a hurryburry our house is in,” it went. Just when I think those days are gone some craziness happens again.

My kids are technically teenagers now, 14 yr old boy/girl twins. My son, Reid, has autism and maybe some other labels if we wanted to pin them on him—OCD, bi-polar, ADHD x 10. You name it, he seems to have a touch of it. So the hurry burry goes with the territory. In many ways our lifestyle is still as unpredictable as yours with toddlers—we are still working on language development, social skills, turn taking, sharing, using your words, even potty training. Autism affects social, language, and behavioral development—so mastery of those skills will be a lifelong pursuit for Reid.

Just last Saturday, the hurry burry set in when a friend dropped by unexpectedly (Reid thrives on structure). As I walked her to the curb, another friend walked by with her small dog. Our big dog saw the little dog through the window, which spurred a barking frenzy. Since Reid has hyper-sensitive hearing, this brought on a screaming jag and an explosive reaction. Doors were slammed and a garage door opener thrown. I am grateful to have some pretty exceptional friends who understand when I yell BYE and suddenly bolt for the door to salvage the house before my husband blew up too. Sound familiar? This is not unlike what you do with toddlers when you get off the phone abruptly, “gotta go” because of a loud noise from the other room.

I tell you all this not to bash my son or complain-- but simply to establish why I chose the roller coaster as my theme park. Most roller coasters start with a very long twisting line.

Our experience of parenting started with a very long wait –7 years of infertility followed by the twists and turns of adoption before…in total ecstasy we finally adopted TWINS—a boy and a girl no less!

Around 18 months, I had a gut feeling that something was not quite right with Reid and began asking questions of the pediatrician…wanting to be told that it was nothing. I raised every red flag on a checklist of autism symptoms.

Can you picture those hard, full-body restraint seat belts they lower over you and click into place when you get in a coaster car? That’s what it felt like when Reid was gradually diagnosed with autism around 3 years old. With no choice in the matter, we initially felt trapped, stuck, a little tricked by God, and like surely we were going to die.

Thus began the steep ascent up the first hill. We white knuckled it up every hill climb and blind turn, telling ourselves I can do this, freaking out inside, trying to fearing the future, trying to silence our second thoughts and all the "what ifs".

The slow, click, click, clicking sounds of the machinery remind me of how painstaking it is for Reid to master every new skill and developmental milestone . You can practically hear the gears turning in his brain and feel the traction that’s required to do what seems so simple for everyone else—utter a sentence, throw a ball, tolerate clothes on, blow out a candle, ride a 2-wheeler, tie his shoes.

Then the coaster goes into that free fall and drops-- along with your stomach.

Everyone around you is screaming; air is whooshing and machinery sounds seem to be turned on full blast. Reid’s body is often out of sync. He has a myriad of sensory integration issues. Background and foreground noise are one in the same for him. He hears fluorescent lights and I believe the neighbor’s television sets. When he is on overload, it becomes our reality as well. One thing can lead to another in rapid succession then, and there is no way to get off the ride.

OWHH! Then along comes a sharp turn. Your neck jerks and you are thrown around. For us, this happens when there are problems at school. We’ll have to find another one. Or when the daily phone call from school includes an “incident report” or “problem behavior” documented for the record. Turn after turn. Hang on!! When will this end?

(Can you tell I don’t like roller coasters?) Here’s why I think God allows them…or what I’ve learned about God from the one I’m on!

First thing I’ve noticed about coasters—even from the ground level where I usually just sit and watch-- is that even the people who love them, mostly love them at the end. When they are over. Waiting in line, they’re scared, anxious, tense, and insecure. It’s not until the final braking and coasting into the station that the smiles form across their faces. It’s only when they’re de-boarding the vehicle—taking all your belongings with you—that they say, “Let’s do it again!”

1 John 1:4 says “what we have heard, what we have seen with our eyes, what we have looked at and touched with our hands, we proclaim to you also, These things we write, so that our joy may be made complete.”

Our joy does tend to come at the end. God’s seems to indicate here that our joy will be complete at the end of the ride, not necessarily at every climb and twist and turn along the way.

Secondly, God doesn't leave us alone. I can count on one hand how many coasters I’ve ridden. One was at the Del Mar Fair. My daughter reallllly wanted to go on one. No dad around. You can’t put an 8 yr old on one of those rickety rides by herself so, I had to buck up and do it. In total self-sacrifice and protection, I said yes. I didn’t ride that one because I wanted to, but because she asked me to! I don’t think I would be on this ride-of-my-life if God had not asked me to take it. And, moreover, He goes with me, which really does make it all OK.

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:5-7

Another time I found myself on Space Mountain in Disneyworld. The only thing worse than a fair roller coaster is one in the dark where you sit single file! This time we were with courageous boy cousins and a grandfather who pressured Allie and I into taking it. Papa Jim, her grandfather remembered it (from 30 yrs prior) and assured us it was very tame…nothing really. Well, we believed him until we entered the first dark tunnel. It was not tame! Allie was mad. She won’t trust Papa again…at least in theme parks.

Lastly, God doesn’t betray us. He clearly indicates that there will be trials along the way: in this world. He doesn't want us to be surprised; he doesn't talk us into things, He talks us through them in His Word.


"In the world you have tribulation, but take courage; I have overcome the world." John 16:33


"Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing" 1 Peter 4


"Just think—you don't need a thing, you've got it all! All God's gifts are right in front of you as you wait expectantly for our Master Jesus to arrive on the scene for the Finale. And not only that, but God himself is right alongside to keep you steady and on track until things are all wrapped up by Jesus. God, who got you started in this spiritual adventure, shares with us the life of his Son and our Master Jesus. He will never give up on you. Never forget that.
1 Corinthians 1:6-8 from The Message

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