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
Psalm of a daughter
3 days ago