Kids & Parenting
Our journey with our son, who is now ten years old, began long ago, even years before his conception. It was originally to be a summer fling with the girl who was to become my wife, but she hooked me something good, and I guess she thought I was a keeper. By the time we were midway through college we were quite serious in our relationship. Somewhere in those college years, we took a “Marriage and Family” class together… just in case, mind you—you can never be too prepared! The class of course included the baby exercise—the couple “has a baby” together, and for a couple of months, treat it as the “real thing,” to get a better feel of what having babies might be like.
A lot of the students did the assignment only half-heartedly, but my wife and I were good little students, and we did it up right. We even were blessed with twins in this project, and it just so happened that my mom had given my wife (K) a set of Raggedy Ann and Andy dolls she had made for her that Christmas, so we had the perfect props. “K2” and “K3” were the little bundles of joy we carried around with us everywhere. Now I don’t know if ALL fraternities live down to their reputation, but at least one of the did, and they thought it was “fun” to “kidnap” our poor children! It should have been a sign to us that our lives with our REAL children, bearing the same names as our “children” from that class, would be anything but ordinary!
We were finally able to retrieve our “children,” and somehow walked out of the class with a passing grade, despite our problems. Seminary followed college, where we were both studying to go into the ministry. My wife wanted to explore a children’s home ministry for troubled children—which could also have been another “sign”—so she worked in a chilren’s home her first year, and I joined the staff for the following summer to help run its camp program with her. While there we both worked with a wide range of special needs children, some of whom were probably Asperger’s children, but that term was not being bandied about yet. With both of us having a strong interest in these children, and both of us working well with them, I prayed “Lord, I know there will always be special needs kids coming into the world, and it seems that You have called us in this direction—many parents have a terribly hard time with them, but You have gifted us in this way to be able to do well with them. Lord use us as You will, even if it is to be parents to one of these special children.”
Of course I didn’t consult with my wife before making that prayer, and we had also had some interaction with Autistic children, and she had said she thought she could handle anything but Autism. So I added that caveat to my prayer, “Lord, we’ll gladly handle anything but Autism.” Years later when we started learning all about Asperger’s Syndrome from the inside out, I’m realizing that in God’s twisted sense of humor, He figured it was “pay-back time”—I was always invested in being a “good Christian boy,” but I could also push the limits with the best of them—and now it seemed God was doing the same with me!
K2 was born Thanksgiving weekend of 1994—the day before his birth, my darling wife was hitting the Thanksgiving weekend sales and hitting them hard with the rest of the girls in the family. K2 wasn’t due until Dec. 10th—but whether it was K’s hard walking and shopping, or his already eager to break the rules, K2 decided it was time to come into the world. I had always thought that the magic of the night was required to bring babies into the world, as that’s when they always seemed to come. But K2 was considerate, and waited till morning to make the time be known. That afternoon was the infamous Florida-Florida State game. During labor, I, the Seminole fan with garnet and gold running through my veins, decided we could settle the family squabble (I had married into a firmly rooted Gator family), by allowing him to root for whichever team won the day.
My brother suggested we name him Ty. He burst into the world just as the game was ending—but you can probably guess the outcome with my brother’s witty suggestion. Could this have been another sign that his life was not to be simple and strait-forward?
I had the blessing of helping throughout the birth, and cutting his cord. But the first week or two were not a bed of roses. I had apparently been overly enthusiastic in helping my wife through labor, as she ended up with a strained neck from the ordeal, and was unable to hold K2 that much in those first two weeks, and he had some trouble learning to latch on with his nursing. But he immediately became very attached to me—quite literally—as I carried him around in a belly pouch as much as I possibly could, both for my sake, and to help make up for his not having that kind of closeness with mom right away.
He charmed everyone in those first few years, almost like magic. When he was two and a half, we moved to become the pastor for a church that was mostly older folk. The only regular children in attendance were K2 and his new baby sister. It was a friendly church, but still somewhat stiff. But with K2’s power of charming the world, and wanting to love on everyone he could, he almost single-handedly developed that merely “friendly” church, into a hugging church, overflowing with warmth!
Eventually with he and I (K was very involved in mothering our infant daughter) working together as a team—he “worked” with me a lot-- we helped make the church more visible in the community as a family church, and we brought in more families and children. In his first few years, while he did not have a great deal of interaction with other children, he continued to charm and be surrounded by adoring adults and seniors. I wonder sometimes if that early context for his socialization contributed any to his unusual social skills that are a part of AS.
“Well, that boy grew. He grew, he grew and he grew, until one day…” (to quote a famous passage)-- he hit third grade. We had been getting little hints all along that he was a little “different.” But right away as he got into third grade, the little hints became full-blown signs, with his teacher most days bringing up concerns to us about his behavior, and how he was alienating the other students. We happened to be changing family doctors at the time, and were blessed with a D.O. who recognized right away what we were facing, as both her husband and son were also dealing with AS.
Though we are in a very good school district, even with this diagnosis, his school and teacher did not know what to do with him. K2 is very bright and articulate, as is often the case with AS kids, so there was no “obvious” impact on him academically—although as his parents we were well aware that he had the smarts to get much more than the merely passing grades he was now earning (he had been actually writing multiple pages PER DAY in his journal in kindergarten—now it was a fight to get him to write half a page). He had no friends, he was constantly invading others’ “space,” constantly being called on for his inappropriate behavior both in class and in the playground, but since he was managing academically, the school would not work with us on an IEP, nor make any other special arrangements. The school counselor and school psychologist were brought in, along with the district’s coordinator for special needs children, but though we spent virtually the whole school year trying to work with the school and educate them as we were being educated about AS, we made no real progress.
Things were little better on the home front. Though we had both had a good deal of experience with OTHER special needs children, this was OUR son, and the emotional entanglements because of that made things so much more complicated. As we were starting out trying to understand AS, with our “head-knowledge,” we were coming to understand that though he may appear to be “normal,” to expect him to behave within “normal” parameters was unrealistic. But our parenting, our personal connection with him, strained as it was, was not coming out of our head knowledge—it was coming from our wounded and confused hearts. “How can he appear so normal, yet not act and react like a normal kid at all? Why can’t he just act right?” – though we never voiced these thoughts, that is the mindset out of which we were trying to function.
My darling wife has worked tirelessly to learn all she can—and to distill the essentials for me—about AS and how to parent, how to live with it. She has been far ahead of me in catching on—but being the mom, she also has to live with the reality that not only is our son and his personhood judged by his behavior, she, too, is having her personhood judged by his behavior, in a way that I as the dad, never will be. When a child is in a wheelchair or has some other obvious handicapping condition—even to the extent that classical autism is obvious to the casual observer—neither the child nor the parents are usually “judged” in their personhood because of the condition. But with Asperger’s, at least in our experience, in that the child appears “normal,” the world automatically holds both the child and the parents (particularly the mom), to a “normal” set of expectations. So that with a “normal” child, if she or he is a “problem” child, then the child is obviously a “bad kid,” and by extension, the parents (again particularly the mom) are automatically judged as being bad and irresponsible parents, so not only is the child, but the whole family (again the mom in particular) is branded “unclean.”
I may be making a leap with this—but my impression with rather extensive experience in the caring professions for the past twenty years—is that families of “obviously” handicapped children, have the advantage of a public that at least attempts to understand and care. Such children and families may be pitied and somewhat isolated by others because of their situation, but there is at least a formal attempt at “helping” those families (where it is not too inconvenient to do so). But at least they are not “judged.”
We are still having our struggles. I have it easy though—I ran off to war for a year; I only have to worry about getting killed in a foreign land. My wife has to worry about how to live in a place that should be the refuge of home, but that is all too often a battleground in its own right. We have been blessed in this past year in finding a school (Summit Academies—at a number of locations) where ALL the students have developmental disorders of some sort—they actually know what AS is and how to deal with it! The church camp he goes to has for the past two summers had special training to deal with children with developmental disorders as well, so he has places where he can be truly loved for who he is, even with his eccentricities.
He was a pleasure to be with on my leave from Iraq—we spent time at Washington DC where he could feed his obsessions with history (my obsession also- I don’t know about our girls, but I know we boys had it great!) and patriotism. His obsession with archeology has resulted in only one corner of our yard being dug up, and at least that might pay off one day when he finally finds the buried treasure he is digging for! He is blessed too, in that he is pretty comfortable doing his own thing, so his lack of friends is not as painful as it could be. He is quite a talker—his mouth has hardly stopped running since he first learned to talk! He was on a camping trip this summer with the Young Marines, and one of their exercises was in first aid. The mock “wound” he received was a broken jaw, and in acting that out, his jaw was tied shut, and he was not allowed to speak for hours on end—SOMEONE was thinking on their feet, and thought of a great way to work with him and his issues!
We are exploring the possibility of getting a service dog for him. We have heard of service dogs that are not only eyes for the blind, but that can be aids for the “socially blind” as well, which is a good way to describe our son. My being sent off to war has made things extra challenging on the home front with only my wife to bear the load, but she has also been experimenting with new parenting techniques that seem to be bearing some fruit. I’m having a growing concern for our angel of a daughter—she is so “normal” and easy to deal with, that it would be all too easy for her to lose out on parental attention, when so much of it is needed with K2.
K is working only part time in order to have some time to be with the kids. I am re-evaluating my professional goal and options in large part due to the added need for more of my time on the home front that I have been able to give. K2’s situation has become one of the guiding forces in the life of our family. I guess I can’t complain too much, as I certainly opened ourselves up to this with my prayer long ago. It’s a world of difference, though, when it is your own child, rather than someone else’s. But then, parenting in any context brings its challenges along with its blessings, and some blessings are more intense than others!
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I just happened to see this article. My 13 year old son was diagnosed with Asperger's syndrome when he was around seven. We started noticing differences when he was 2, but we dismissed them. Like your daughter, our youngest son is also "normal" by the worlds standards. My husband is an administrator in the school system so we have been blessed with an IEP that provides him the therapy and social help that he needs. We chose to have him mainstreamed with normal kids. It was rough at first when he had no friends. Now that he is in middle school, the social interaction is getting better. I cried the day I dropped him off at school and I saw him call out to another boy and the boy waited for him and they talked together as they walked into the school. He was learning! It is still and always will be a struggle to help him and come to grips with the fact that we did nothing wrong.It helps that I know that God has a special place in this world for my son! Thanks so much for sharing:)
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