Log in (admin only)

Jon’s Story


by Marianne Miles

“I hate you!”

The words exploded from my mouth. A phrase that in my life I had never dared speak to another’s face and now, with these words, I crushed my seven-year-old son. Unthinkable.

Jon cowered on the other side of our kitchen, blinking from under the blond fringe of his bowl cut hair. He didn’t cry—just steeled himself against one more hurt, this time from his mother.

Jon was a beautiful and happy baby born on a sunny day in California. My husband let me choose his name when he was born, which means “God’s gracious gift.” And so he was. Later, when tested his teachers would “ooh” and “aw” over his intelligence scores. Jon was sweet natured, extremely loyal to our family and friends, and protective of small animals but… from the time he was a baby we all knew that something was not quite right about Jon.

Even in his earliest months, Jon preferred to “hole up” within himself rather than be held or cuddled. He walked by eight months and was running by nine. At one year he was climbing on furniture and wildly jumping off, only to run around to the front and do it again. I couldn’t keep up with him.

Still a toddler, Jon never stopped exploring new ways to endanger himself or our belongings. He was not naughty, just endlessly curious and without fear. I called him, “My Monkey” and he often proved himself so by doing crazy things like leaping from a moving swing to the cross bar of the swing set. When I would gently chide him by saying, “No, no, Jon,” he would break into tears, devastated that I was unhappy with him. But shortly, he was off to find another peril.

Several times a day the house became quiet and I began the hunt for Jon. We lived in a small two bedroom house at the time, but it could take me a while to find his little body curled in the fetal position in the bottom of the laundry basket or beneath his bed or some other quiet place. On my hands and knees I would peer under the bed and ask if he was OK. He would nod, still sucking on his right index finger. Sometimes I ‘d lie on the floor, just to be with him, and he would touch my face softly without a word.

His early development included potty-training himself at just eighteen months. “I’m finished with the diaper thing,” he seemed to say. The first time Jon peed in his pants, at two, I dismissed it as a “mistake.” He had been wearing underpants for six months without incident, but he began wetting himself daily and then several times a day. I took him to our family doctor.

“You forced him out of diapers too soon,” the doctor accused.

“But he potty trained himself!” I protested.

The doctor looked over the top of his glasses, “Somehow you pressured him to do that, now you are all suffering the consequences.”

This began my accepting the blame for Jon’s disabilities. It also began the long search for an answer as to how to help Jon in his life struggles, something we are still working on today even though Jon is now 23.

When the doctor first accused us of pressuring our son that day, my husband and I felt guilty about mismanaging Jon’s training. We had successfully potty-trained Jon’s older brother and were wondering what we did wrong this time.

We decided that we could only go forward and begin accepting advice from many different sources on what to do now. Doctors, our parents, friends, church members, magazines, and child rearing books all had ideas and accusations as to the cause of Jon’s bladder mishaps… mostly that we, as parents had failed and Jon was “acting out” in response.

Nothing we tried worked, and we tried it all; rewards, punishment, purchasing a watch with seven alarms built into it to tell him when to go, ignoring the puddles, talking, having him wash his clothes, and on and on. I took Jon back to the doctor but the doctor told tell us that Jon would simply outgrow this and we needed to try one more thing. How did the new regime go? Jon continued to wet his pants daily until he was about twelve.

After the first few years of the struggle, our many advisers became frustrated and turned to accusing Jon of being manipulative and strong-willed. These opinions were the hardest of all because they encouraged us to suspect Jon of being lazy and rebellious. Frustrations racked our nerves and our marriage. That’s when I lost control and yelled those terrible words of hate at my helpless son. I knew then we needed more help.

My husband and I went to a family counselor. We told him the long history of interventions that we had tried with Jon and how we were all suffering from their failure.

He asked many questions clarifying what we had done and then said, “I am so impressed with how right you have done things.” Immediately an enormous weight began to slide from our backs. The counselor had no answers for us as to how to change Jon, but he did offer us relief in knowing that we were up against the “impossible” through no fault of our own. He recommended that we return to the doctor to rule out physical deformity before we continued, something the doctors had always refused to do, saying Jon would outgrow the problem. The counselor also assured us that we would be dealing with Jon’s disability and the behavior problems caused by this time for years to come, regardless of what the doctors found.

We realized then whether or not Jon ever controlled his bladder, fighting with Jon over it was not worth the conflict to our home. We lowered our goal to just providing plenty of dry clothes.

After some months of counseling we finally took Jon to his doctor. I told the doctor, “I am not leaving this office until you agree to do tests on my son and find out what is wrong with him.” A sonogram indicated a deformed kidney and bladder.

Six years of torturing Jon to achieve the impossible left him with deep psychological scars. In addition, Jon also was diagnosed with ADD and a possible dyslexia. After this, the best years of Jon’s childhood were spent in homeschooling and scouts. He excelled in outdoor activities and spent countless hours reading everything from classic novels to historical reference books. He still maintains an uncanny ability for recall, but he barely graduated from high school.

As predicted, Jon developed many behavioral problems and had trouble with social connections. Painful experiences came regularly for our entire family because of his problems, but especially for Jon. By the time that Jon was in high school my husband and I feared that Jon would be in jail or dead before he turned twenty. Then God arranged a dramatic day of realization for me.

This day Jon went before a Boy Scout court of review for approval of his completed Eagle scout project, obtained an early certificate of graduation from high school, and took an oath to join the Army. As I waited for him to come home and report on how these processes went I listened to the radio. A national news story broke that a high school boy had shot and killed his parents and proceeded to gun down over twenty kids at his high school. The young man was described as a “troubled boy from a good family” by the news—maybe a description that people had used about Jon.

I cried all day. For other’s sorrow, yes, but also from realizing a great joy and pure gratitude. For some reason and in some way, God had preserved and directed my son, Jon to achievement the same day another’s spiraled out in tragedy. I knew this was regardless of our parenting.

Six years later, my husband and I do not know if Jon will ever take the initiative to “achieve” the normal milestones of life. He was able to complete four years in the Army and was discharged honorably. But in the two years following he has not completed a class nor kept a job for long.

Will he ever marry and have kids? Own a home? We don’t know. But the one thing that we do know—Jon truly is a gift from God. He still brings much joy into our lives, has a great sense of humor, and loves people with a sensitivity that only one who hurts can know. We still struggle with how to help—people still blame his lack of achievement on our mismanagement—but we have learned to continually place Jon in God’s hands and to leave other’s opinions of us there as well.

©2007 Marianne Miles. All rights reserved. Used by permission.

Marianne Miles is a free lance writer intent on bringing comfort to mom’s of special needs kids. As she and her husband raised their children, including a son with special needs, Marianne developed a passion to support hurting mothers. Her message revolves around the love and provision of God, even in times of trial. Marianne has worked as a volunteer in the public schools, home school mom, and a teacher in a private school. She writes on the subjects of family and education in the form of devotionals, magazine articles, and poetry. Marianne welcomes reader’s comments and publisher’s questions at Marianne_Miles@yahoo.com.

Marianne’s first column for parents of special needs children is in this issue. See Miles to Go.