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Family Business: Manchild Coming of Age

Posted by Richard Conniff on June 10, 2013

215My Dad died Saturday, age 92.  He was a writer and a passionate teacher of the craft and love of writing.  I’ll post an obituary later, but this is an article he wrote for the New York Times magazine about my brother Mark, who has Down syndrome, and about raising him at home when institutionalization was the more standard practice:

MY YOUNGEST SON, MARK, has his suits and jackets fitted with extra care, because, 5 feet tall, he weighs more than 170 pounds and is built like a padded fire hydrant. He is dieting to fight that image, though, and has 27 Special Olympics awards on his wall to prove it, right beside life-size posters of Michael Jackson, Kenny Baker and Barbara Mandrell. Mark is a powerful swimmer, and five of the awards are for first place in the category.

For 31 years, Mark has been a central fact of our family life, knitting us together, trying our patience, helping us laugh, probably making us better people than we would have been without him.

I remember the night call, hours after he was born, and the doctor’s trying to be gentle as the darkness around me grew suddenly deeper: ”I regret having to tell you your new son may be mongoloid.”

They don’t say that anymore. They don’t call leprosy leprosy, either. Now it’s Hansen’s disease. And mongolism is Down’s syndrome, or trisomy 21, a chromosomal abnormality that hinders the development of the mind. The growing brain signals its imprisonment in the smaller skull by causing erratic gait, slower growth, vulnerability to infections, clubfeet, other anomalies.

Knowing I was a medical writer, the doctor shared with me the details that left little room for doubt: the epicanthal fold of the eyelids at either side of the nose, excessive bone-flex even for a newborn, deeper-than-normal postnatal jaundice, clubfeet, the simian line across the palm of each hand. Later, one of many specialists we consulted would say of Mark: ”Let’s leave a door open for me to back out of. There are people in Congress less bright than he may yet turn out to be.”

Nobody’s perfect, in other words. Even so: mongoloid. The word boomed in my soul like the tolling of a leaden gong. No more sleep for me. Next morning, I entered upon a conspiracy of one.

”Why can’t I see the baby?” was my wife’s first question after the kiss, the forced congratulatory smile. The lie ”They’re getting him ready,” came with clinical ease. ”He’ll be up to see you soon.”

Then the quick maternal discovery of his clubfeet, and my too-swift assurance that the feet were ”only an anomaly” which remedial measures would correct. Worst of all, her tearful puzzlement at learning we would have to leave him in the hospital ”for a few more days” to make sure his casts ”weren’t on too tight” – or some such double talk.

Back home without him, I found myself unable to keep up the charade under mounting internal pressure. After a few miserable days, I blurted out the truth and endured her dry-eyed demand that we ”Go bring him home, right away, so I can take care of him. Now. Today.”

Caring for a baby with legs in plaster casts spread wide at the ankles by a rigid steel bar to straighten the growing feet can take its emotional toll. But from the start, Mark’s older brothers, and especially his sisters, devoted themselves to helping us raise him. Under what I now look back on as a cascade of sunrises and sunsets ”laden with happiness and tears,” we overcame any misguided temptation we may have had to institutionalize him.

One undeniable result has been that he is much further along, and far better equipped to deal with life in spite of his limitations, than he would have been if we had done that to him. Today, as he stands poised to see whether he likes it in a group home, we take comfort in knowing we tried to do right by him. Another gain has been that he has done well by us; caring for him has matured us. Aged us too, no doubt, but that would have happened anyway.

The father of a retarded child wonders if in some unforeseeable way he may have contributed to the tragedy (in my case, possibly the case of mumps I had before Mark was conceived). Some men walk out on what they see as an impossible situation, a saddling of their marriage with an unending burden. Some come back. Each case is unique. No one outside it can judge.

Ironies abound. Long before Mark was born, I wrote an article on mental retardation. It helped, I’m told, get Federal funds for research into the causes. And when Hubert H. Humphrey’s granddaughter was born retarded, he and I wrote pieces pleading with readers to recognize that mental retardation is a totally different affliction from mental illness. ”It’s not contagious, either!” Hubert would shout at me, as if I needed convincing. Yet in my own extended family some still think Mark is contagious.

Harder to take is watching him strive, in a family of writers, to produce copy. Pages of hand-scrawled and sometimes typed letters, all higgledy-piggledy, spill from his fevered efforts to ”follow in your footsteps, Dad!” And almost nightly, lonely and eager for an audience, Mark interrupts our reading or television watching to rattle off plots from reruns of ”M*A*S*H.” We try to look attentive, even though it drives us nutty. Shouting matches help ease tension, and I have on occasion threatened to work Mark over. But sooner or later he forgives me. With a hug.

Indefatigable, Mark has handsawed his way through storm-toppled tree trunks without resting, mowed lawns, backstopped me on cement-laying jobs. I repay him with prodigious hero sandwiches, which he seldom fails to praise.

At 31, he still cannot read, but he does guess at numbers, at times embarrassingly well. When, here lately, he began to put a cash value on his toil and asked for pay, I offered him a dollar. He looked at me with a knowing grin and said, quite clearly despite his usual speech problems, ”Five bucks, Dad, five bucks.” I gave him five ones.

For signs like this that the manchild is coming of age, I am grateful. And for something else: I can’t say we feel he’s ready for Congress, but he has given us hope. Unlike the night he was born, in part because of Mark, I am no longer afraid of the dark.

 

 

7 Responses to “Family Business: Manchild Coming of Age”

  1. Erin Kelly-Boschen said

    That was so beautiful, Dick. I’m so sorry that your Dad passed, but wow, what a gift to have a Dad like that. What a gift to have a family like that. Thank you for sharing this. I needed that cry.

  2. Dick, what a beautiful piece. I’m so sorry for your loss but delighted to have this insight into what a wonderful man your Dad was.

  3. Frankly, that piece says so much about your dad that you hardlyneed to post an obit. He was a wonderful man…so glad I had the chance to meet him the few times that I did. He will be missed by so many, I am sure!

  4. glennis Cannon said

    The heart so open , so filled with love , so proud of this son who caused and created challenges that would otherwise never have been. This is the writing that we all want to hear from our parents , that of loving acceptance for where we are at, not the greatest brain power but the greatest receptor of love and in return undying love . Wonderfully written by one so loving and accepting of differences !

  5. Richard Reilly said

    Richard, Thank you for your sharing. It is important today that we remember where we came from. Britt Sady (Executive Director, GiGi’s Playhouse NYC) and myself sat with the Burkes at the NDSS Gala in NYC this past year. Frank and Marion remembered vividly, having to “leave” Chris at the hospital when he was born. When they left to go home they had to sign a paper that they would come back and get him. There was still sadness there. Chris was their son.

    Your mom and dad were the pioneers who paved the way for our journey. That your dad lived to see that he made a difference, and for you and your family to know that because of their trying, we in the disability community today can genuinely embrace the word future, the word celebrate, this is a joy!

    Richard Reilly
    The Grandparent Connection
    GiGi’s Playhouse NYC

  6. […] readers may recall that a few months ago, after my father’s death, I posted an article he had written. ”Manchild in the Promised Land.” about his youngest son […]

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