Fragile Children in a Toxic World
I was going to post about my 7yo son, T’s Asperger’s Syndrome (AS), but that is not right. He doesn’t own it. It is one of many types of disorders which describe those who are unable to cope with present-day society. This is so difficult to write about, but it has been floating around in my head for some time. So, here goes.
T was always different. After a difficult birth, which followed a very healthy and uneventful pregnancy, he became a very fussy and clingy infant. I could hardly put him down for the first year of his life without him screaming to be back in my arms. He became a fussy, sad, angry toddler who threw several tantrums a day until he was 6 years old. I am not going to go into all of the details of his personality and behavior because I have done so with dozens of others. I am tired of doing that. Instead, I’ll just say that he was unlike any child I had ever known or have known since.
I taught at a daycare in classes for kids ages 0 to 5 for 3 years; I substitute taught and taught elementary school, grades K-5 for another year; and baby sat for several families as their children grew from being infants and toddlers to elementary aged children; I also have 13 younger cousins that I grew up with, whose diapers I changed, and who I watched grow up. I have a Bachelor of Science degree in Elementary Education. I have attended countless seminars and classes on childcare, child development and teaching both in and out of college. I felt as if I knew children. I loved children. I couldn’t wait to have children. Then I had T.
T was always different. The pediatrician said “He’ll grow out of it.” The La Leche League leaders said, “You just have a fussy baby.” Family members said, “Just make him mind.” My heart said, “Don’t let him cry. Don’t let him hurt.” But I was unable to do these things.
By the time we had gotten through his preschool years, I felt like a total failure. In some areas he was brilliant. He walked at 9 months, talked early and had a rich vocabulary. He was reading independently at 4. He knew his colors, even magenta; his numbers, his address, and his alphabet before he was old enough for Kindergarten. He has a sense of humor that can not be rivaled. But he was clumsy. He seemed to trip over thin air. He ran into walls. He could not, and still can not tie his shoes. Thank god for Velcro. His drawings were often unintelligible. His fine motor and gross motor skills were behind his peers. He could not make eye contact and was afraid of strangers. T is also a very sensitive child. His senses are often overloaded. At 5, we took him to be evaluated by an Occupational Therapist (OT), after I had done some reading about Sensory Integration Dysfunction (SID). The tests showed that he did indeed have moderate to severe SID. This means that the signals that he picked up via his senses (sight, smell, taste, hearing, touch, vestibular and proprioceptive) were not being correctly interpreted by his brain. After 6 months or so of OT, the tantrums all but vanished. He went from having 5 tantrums per day to having 1 every 1 to 2 weeks. The OT seemed to be working.
However the money began to run out as our co-payments went up. Plus, we felt overwhelmed by spending more than 4 hours a week en route to and at therapy appointments. At this time, I also had my two other sons with me, ages 3 and 0. Son #3 was beginning to walk. T’s behavior started to go downhill a few weeks after we discontinued OT.
I got nervous about school. We had decided early on that we would homeschool our children. But, T’s behavior was becoming such a problem that I feared his school, or lack thereof, was going to suffer. In our state, one must begin compulsory education at age 6. He would be ready for first grade in the fall. I wondered if T really needed the “expertise” of a Special Education teacher. We had him evaluated by the local school district for possible enrollment. The tester reported that, academically, he was at or above grade level in all areas. However, her tests revealed that he “most likely” fit the criteria for Asperger’s Syndrome (AS), an Autistic Spectrum Disorder. We proceeded to get him placed in a Special Ed. Class at our neighborhood school. What a disaster it was! To make a long story short, T attended class for only 2 half days, during which he would not leave the doormat. Visitors to the classroom actually had to step over him. I and my two other sons stayed on campus the entire time and had to check in every 15 minutes or so. The teacher, who had 25 years experience as a Special Ed. Teacher, said, “ I have never seen behavior like this.” She then proceeded to ask me what materials I thought would work best for him and how she should go about teaching him!!! She had no suggestions and seemed to have no knowledge of AS. I, on the other hand, had spent the entire summer before and after the evaluations reading everything I could about Asperger’s Syndrome and Sensory Integration Dysfunction and joined and online discussion group about AS. I withdrew him from the school and never returned.
At the time, I agreed with both diagnoses. They seemed to fit. Now, I wonder if other issues, such as Bipolar Disorder or Attention Deficit Hyperactivity Disorder (ADHD) are relevant. Were they co-morbid or was T misdiagnosed? Was there some credibility to the so-called Indigo Children I had heard of? I started second-guessing. After all, all of these “disorders” run in our family. Research has shown possible genetic components and degrees of co-morbidity in all of these disorders. Further, there is no conclusive evidence as to what actually causes them. Though I do not deny that these conditions exist and that some children and adults are afflicted by them, my reading has led me to wonder if something else is going on, something bigger than T, bigger than our family or the families of other kids.
It is true, these children do suffer. When T goes into a crowded room, the noise, the perfumes and body odors, the bright, florescent lights, the mental energy assault him. His ears and eyes hurt. He becomes paralyzed with fear, panic, and anxiety. You can see it in his eyes, in his shoulders, in the way he averts his glance, in the way he holds his body, ready for flight. When his lips are chapped, cracked and bloody from the sun and wind because he can’t tolerate any type of balm, I feel like a neglectful mother. But what should I do? Should I wrestle him to the ground like a German Shepherd who needs his medication? Should I force him to comply? I understand how he feels. But others don’t. They think I should just make him behave. It’s not that simple. T deserves to be treated with respect and understanding, with kindness and love.
We’ve been home schooling in earnest since then. T is now in the middle of second grade, if you use his age. In some subjects, like reading, he is well above grade level. In others, like math, he is right on target. He needs to work on his handwriting. But he is starting to give me the same problems other 7 year olds are giving their mothers, fathers and teachers. His behavior has evened out. The issues that drove me to consult “experts” have worked themselves out. He still has occasional meltdowns, born out of frustration, but not the huddle-on-the-floor, bang-your-head-on-the-wall type. He just cries now. And he lets me comfort and hug him. He does his schoolwork without arguing. He does his chores. He makes his bed. He looks me in the eye.
I try my best to cushion the blows from the outside world. I teach him to twiddle his thumbs in the grocery store instead of spinning in the middle of the aisles with his arms outstretched. I help him learn to do for himself. I let him grow his hair a bit longer. I keep a good supply of detangler on hand. I help him to pick out the softest clothes. I cut out the tags, even though hand-me-downs become a problem. I let him have days at home between errand days. I take him across town to the spinning tire swing. T does have to live in this world – this loud, bright, raucous, crowded, windy, sunny, cold, scratchy, malodorous world. This world moves too fast, flickers too much and is too often uncontrollable and inflexible. I can help make his home an island of serenity. Serenity in which 5 people and a cat can relax without intrusion. If I can teach T to regulate his own inner world, maybe he’ll be able to thrive despite the world outside.
I now believe that our culture, our society is detrimental to the human race. It’s effects are especially felt by those least able to resist it – our children. We were not meant to be out of touch with nature, each other, or ourselves. I can not fix society. I can not control the media. At least, I can not in my lifetime. So, for now, I will work within the bounds of my family. I will teach my children to comfort one another and others.
For further reading, please check out these websites:
Online Asperger Syndrome Information and Support
National Research Center on ADHD
