Thursday, September 4, 2008

The Eye of the Beheld...

You can't see his entire face in this picture, but perhaps you don't need to. What do you see? A brat? A cute kid? A threat? A challenge? An inconvenience? A nice photo (Why, thank you! I took it myself!)? A beautiful eye (He gets his eye color from me!)? You know what I see? I see the One. Christopher was our firstborn, the surviving twin. His twin simply disappeared early in Wendy's pregnancy. They told us it was "Vanishing Twin Syndrome." He was born at 34 weeks and 5 days, but he was only 17 inches long, weighing only 3 pounds and 10.25 ounces, the size and weight of a 28-week baby. He had a feeding tube until he was almost 2 weeks old, finally leaving the hospital at 15 days. When he repeatedly spit up the formula he received in the hospital, we said, "Could he be allergic to milk? Michael (I) was allergic to milk as an infant." The doctors said, "No, I'm sure he's not allergic to milk." After two years of Christopher screaming every night and steadfastly refusing to sleep in his own bed, we took him to an allergist. The tests showed that he was indeed allergic to milk. The adults in his life had not done their best work!

Three years ago, our son Christopher began the long journey through the school system. When Wendy and I met with all his teachers as a group, I told the entire team that Christopher will never be one of the ninety-nine; he will always be the One. But if the adults in his life do our best work with him, I said, he will leave beauty in his wake.

As it turns out, the adults in his life did not do our best work that year or the next or the next. Some saw in Chris a threat to their way of doing things. You see, Christopher is "different." Oh, I know, every parent thinks their child is special, but this one is very unusual. For starters, he has several life-threatening food allergies, which means we have to be very careful not to feed him dangerous foods, like peanuts, chicken, and peas. Unfortunately, before he even started school, a day care worker gave him peanut butter crackers, prompting one of several trips to the E.R.

His third day in kindergarten, Christopher's teacher told me, "I just don't know if this is going to work.
Kindergarten is not like it used to be; I don't know if Christopher can focus well enough to learn the material." Fortunately, he did. However, although he "graduated" from kindergarten, he had no friends, due to his extreme social awkwardness. When he was in first grade, he requested permission to leave the lunch room to go to the restroom (He had no history of "faking it"). The supervisor said, "No. You'll have to wait." He asked again, saying, "I can't wait." "Well, you have to." The problem is, he really needed to go, and he couldn't wait. So this tiny, socially awkward child was forced to urinate on himself and on the floor as his classmates watched. Once again, the adults in his life had not done their best work. I know exactly what that feels like; the same thing happened to me when I was in first grade. When I took his dry clothes to him, I found him coloring in the health room. He was coloring a picture for me, and although he was sitting there in wet and stinging clothes, he would not change until he had finished my picture.

Later in the year, Christopher had to stay after school for coloring on his desk. It turned out he was frustrated because he didn't understand what he was supposed to do, and couldn't get any help. So he colored. When I tried to persuade the assistant principle that detention would not be effective in changing Christopher's behavior, she refused to consider any different form of discipline. So the One had again been treated as one of the ninety-nine, and the adults in Christopher's life had again failed to do their best work.

Christopher has made up words and sounds since he was much younger. Although he was a late talker and an "odd talker," by the time we was in first grade, he spoke very clearly. However, he was misheard in his after-school program. An adult supervisor thought he repeatedly called someone a "jackass." The truth is, he was saying one of his made-up words, one that we heard at home all the time. There was nothing insulting about it, nothing crude, nothing inappropriate. However, he was suspended from the after-school program for several days, although we still had to pay for those days. He (and we) missed the deadline to sign up for the summer program because of this suspension. Again, the adults failed to do their best work with Christopher.

At church, we have another problem: Christopher has no tolerance for music. His doctor says it's a "sensory integration" issue, most likely connected with his ADHD. Please understand: music is my first language, so for me, this is especially problematic! Going to "big church" doesn't work for Christopher, especially for a music program. However, the nursery is only for younger children. When Wendy needed child care so that she and Amanda could attend a musical program I was playing/singing in, it was refused, and my wife was insulted in the process. Yet another failure.

Observing his unusual behavior, some see Christopher as a "bad kid." Some think (correctly, I believe) that he has an extreme case of ADHD. Some have thought he was simply not very intelligent. Others have thought Wendy and I don't know how to parent him, so his and our problems are our fault. Sometimes it may be true.

Because he doesn't always behave in predictable ways, Christopher is a huge challenge to anyone who wants all kids to conform to whatever standards constitute "normal and acceptable." He frustrates anyone who wants to control him. People often don't understand Christopher. Although I love him more dearly than I do my own life, I don't always understand him. However, I don't have to completely understand him in order to love him. You see, when I look at him, I see the One. He's the One for whom I would and do leave the ninety-nine. He's the One who first embodied the commitment Wendy and I made to each other: "for better, for worse; for richer and for poorer; in sickness and in health..." He's the One in whose eyes I am sometimes "the best daddy in the world." He's the One who said about the person who caused him to be suspended from after-school care, "Maybe she has a hard time in her job. Maybe that's why she was mean."

When you look at Christopher, you may see a cute kid, a real wierdo, or a spoiled brat. Sometimes, I agree, he may appear to be any of these. But you know, I always see Christopher as the One. He's the son of my heart and the expression of my love, the object of my affection and the subject of my dreams, a source of frustration and confusion, wonder and happiness. He is a reason to pray and a reason to cry and a reason to rejoice. And though he doesn't think so, he's even a reason to sing!

Chris doesn't ever look into my eyes for very long, so I really enjoy looking into Christopher's eyes as they gaze at me in pictures. What do you see when you look very closely? I see a reflection of my love. I think God sees that when he looks at us. Let it be true!

Grace to you,

Michael

©2008 J. Michael Bryan. All rights reserved.

6 comments:

Nancy said...

This writing is stunning and brilliant. It expresses so much of the pathos of life -- and that so much has already been experienced by one so young is intensely tragic! Failure (to meet C's need) and yet there is great hope and expectation. The fragrance of Christ is overwhelming! Thanks for sharing - I am changed forever.

Anonymous said...

Michael,
Beautifully written, beautiful pics, beautiful child. I pray we don't fail him anymore. Thanks for sharing.

Lisa said...

Michael, I hesitate to offer my own "arm chair psychology" but I have worked with many children over the last 15+ years. I know some children who exhibit some of what I read about your beautiful Christopher and they have "symptomatic autism." I have a dear precious friend that is 23 years old and he is autistic. We have a ball together and others do too with him, after they learn how to respond to him and appreciate what makes him so special and unique. Keep us updated on all of your new discoveries! Blessings!

J. Michael Bryan said...

Lisa-
I'm not particularly put off by most diagnoses, as long as we don't allow people to be defined by them. Asperger Syndrome is on the Autism spectrum, and some just cut to the chase and call him autistic. Because his two primary doctors don't agree on that diagnosis, I hesitate to say Christopher is autistic. In fact, I don't say it. For me, Chris is a wonder, a smart, funny, intriguingly creative child who has the potential to really change the world for the better. The world is already more beautiful because he's in it.

Thank you for your comment.

Lisa said...

Hey Michael,
I agree. Why label? I know more grown adults with Asperger and they are (as you said) beautiful, witty, charming people. I saw a special on TV quite awhile ago and called a friend of mine, who's young adult has Aspergers, to tune in. It was about a university, but of course can't remember the name, that encourages students with Asperger to enroll in their school to complete their college degrees. If we can help make the world see that it isn't a label but a gift, the world would react differently. It is sad that some teachers would rather label and medicate than accept and see the beauty. You can probably tell, I'm a strong advocate for special needs. I have taught a special needs Sun. Sch class for almost 12 years! Thanks for sharing your story. Enjoy all the gifts your children bring!

gzg said...

My dear Michael,

Christopher couldn't have a better dad. Your perspective, temperament, and talents are once again being used to help others "love...with a love that doesn't come from [you]." Please submit this piece to other venues; it needs to be shared.

...Now I love you and your family even more...