Windows

This summer I have read two memoirs written by mothers of children with autism, which I always find interesting as I compare notes. Both of these books discussed the concept of “windows of opportunity,” the critical stages of brain development, and the race to have their children master skills by certain ages. This windows theory from the 1970’s has haunted parents of children with developmental delays who are frantically trying to help their children reach milestones before those windows close. I’m reminded of the scene from the movie Titanic where the workers in the bowels of the sinking ship must hurry before the doors to the watertight compartments closed tightly, trapping them from ever escaping. Like the workers helping each other as they scramble through the doors that seal their fate, parents push their children toward those developmental windows, not wanting them to be left behind their peers. Of course, this windows theory drives the need for early intervention, making certain that children with developmental delays, such as autism, get the help they need as soon as they are diagnosed.

Despite our best efforts and concerns, Alex wasn’t officially diagnosed with autism until shortly after he turned four years old. At that time, the prevailing thought was that the main window of child development closed at age five, giving us only about a year to push Alex as far as he could go. As if dealing with a child with autism weren’t stressful enough, the thought of having a rather brief time limit to “fix” him only added to the worries. His special education preschool teacher (the same one who made him hold a sign that said, “IGNORE ME!”) apparently bought into this windows theory because she would repeatedly express concerns about Alex’s thumb sucking and trouble with toilet training. Basically, she seemed to believe that if he didn’t master toileting and stop sucking his thumb by his fifth birthday, he would never break his thumb sucking habit, nor would he ever toilet independently. Since I had sucked my thumb until I was nearly six years old, I knew her beliefs were wrong. Nonetheless, my own reading and research about child development indicated that many people believed the windows theory to be true, and I felt pressure to help Alex develop as many skills as possible before that dreaded window was supposed to close at age five.

As a middle school teacher, I was taught in education classes that students cannot learn much during adolescence because hormonal changes affect their brains and distract them from learning new skills. Like the windows concept, this adolescent learning plateau hypothesis may be true in theory, but I have found both ideas to be false in practice. I know that my seventh graders learn new skills in the year that they spend with me, and I have the data to prove it. Similarly, children continue learning after that alleged window closes at age five; I have observed that Alex has gained a great deal of knowledge and skills after he turned five. Despite his preschool teacher’s dire predictions, he did stop sucking his thumb and started using the toilet on his own—in his own good time, when he was ready to master these tasks. Ironically, once Alex turned five and we got past that dreaded window that nagged me, even if I didn’t totally buy into the theory, I felt a rush of fresh air come into our lives. No longer racing against an arbitrary clock, we continued working with Alex and celebrated each milestone, knowing that learning is not something to be rushed, but rather to be enjoyed as a lifelong pursuit with each person mastering skills on his or her own timetable. Thankfully, we have found this to be true with Alex, who continues to learn and develop, long after his fifth birthday has past.

“So she helped him climb out through a window, and he fled and escaped.” I Samuel 19:12

Red Flags

Although Alex was not officially diagnosed until shortly after he turned four years old, we had been suspicious for about a year earlier that he had autism. When we took him for his annual physical exam at age three, we shared our concerns about his language and toilet training delays with his pediatrician, who assured us that Alex was very smart and that his delays were solely because he was a boy. Indeed, he did not meet any of the criteria for early diagnosis of autism: not smiling by age six months; not babbling, pointing, or using other gestures by age twelve months; not using single words by sixteen months, not using two-word phrases by twenty-four months; or having a regression in development with any loss of language or social skills. Alex could do all of these skills at the prescribed times and never had a regression, just a plateau where he didn’t seem to make much progress. While he couldn’t do some of these skills well, he could, nonetheless, do them. When we took him to the pediatrician a year later with the same concerns that Alex was not potty trained, nor could he speak well, his doctor finally understood our worries. He asked me what I thought the problem was, and without hesitation, I told him, “I think it’s autism.” That began our journey of evaluations that proved my maternal instinct correct.

Because Alex is our first and only child, we didn’t realize how different he was from other children. In addition, he didn’t have playmates his age, so we couldn’t compare him to his peers who were developing typically. The few times that he was around children his age, he interacted appropriately, even though he tended to be more reserved than others, which we attributed to shyness. Moreover, we thought that some of his unusual interests, such as looking at books without pictures and watching the Weather Channel, were the result of spending so much time with adults because he was with Ed and/or me nearly every waking minute of the day. Even some aspects which we thought were positive were perhaps early signs of autism. For example, Alex’s head measurements every time he went to the pediatrician were in the 90th percentiles. His head never seemed that large to us, and now that he’s nearly fully grown, his head is average in size. When he was little, his doctor used to tell us jokingly that Alex’s head was big because he had more brains than other kids his age did. Several years later, I would read that children with autism often have larger than normal head size. In addition, he has always been remarkably healthy, which we have considered a blessing. Other than projectile vomiting when he was a baby, which was likely an allergic reaction to milk before we knew he didn’t tolerate milk proteins well, he was never sick. Like his seemingly very healthy mother, Alex likely has autoimmune issues, another concern related to autism. Before Alex’s diagnosis of autism, which led me on a quest to research the condition, I had no idea how much autism impacted physical as well as behavioral aspects of development and didn’t recognize some of these details as related to the disorder.

In watching the videos of Alex’s early years objectively, we can now see some of the early red flags warning that he had autism. His sensory defensiveness was evident as he was bothered by loud noises, covering his ears and even crying when startled by sounds. When drinking from his baby bottle, he would tilt his head back and stare into the light bulb in the lamp located next to the chair where we fed him. He also had an uncertainty in his walk, which was probably related to his balance and sensory problems, tilting his head and walking on his toes, a common characteristic of children with autism. While he would notice objects and try to call our attention to them, he would do this by touching things with his hand flattened instead of pointing with one finger, or he would take our hands and have us touch the object. As a baby he would amuse himself by waving his hands in the air; this later took the form of stereotypical autism hand flapping, where he would get excited and look like a baby bird trying to take flight. As a toddler, he was difficult to carry because he wouldn’t wrap his legs around the person carrying him, as most children do. He would wrap his arms around our necks to help with our carrying him, but we had to hold his legs because transporting him was like lugging a sack of potatoes. Perhaps one of the more unusual early behaviors we overlooked as problematic was his need to line up people when they came to visit. He would take each person by the hand, leading everyone into the kitchen, and one by one, put people in a line, as if he were a photographer lining up subjects to take their picture. We thought this was amusing, and we didn’t stop to realize that lining up things is often associated with autism. I suspect that he needed to have everyone in one place in an orderly fashion so that he could keep track of them at least momentarily. Although early intervention is helpful for children with developmental delays, I often think that not knowing Alex had autism the first few years was a blessing because we enjoyed him, quirky behavior and all, and we enjoyed those early innocent days, not worried about what we needed to do. We still savor those precious times and are thankful that once again we spend more time enjoying him and less time fretting over him.

“Tell us, when will all this happen? What sign will show us that these things are about to be fulfilled?” Mark 13:4

Milestones

A few days ago, as I was reorganizing some drawers and closets, I ran across Alex’s baby book. I hadn’t looked at it for quite a while and had forgotten how carefully I had recorded the events of his first year, describing his first trips, Christmas, birthday, and other events in detail. During those first twelve months, Alex met his major developmental motor milestones within the normal range. According to my notes, Alex first turned over at 2 ½ months, sat up alone at seven months, began to crawl at 8 ½ months, and took his first step around his first birthday. What is more revealing, however, is to note the blanks I have left in his baby book: “Mother was first recognized at age___, “ Father was first recognized at age ___,” “That little hand first reached for ___ at age ___,” and “The very first word spoken was ___, and it was said at age ___.” Now I realize that these were all red flags pointing to autism, but I kept waiting, hoping to fill in the blanks.

I have heard from other mothers of children with autism that they, like me, could no longer write in their children’s baby books once they suspected something was wrong. After getting a diagnosis of autism, some put their baby books away, as I did, partly because we were too busy helping our children get better, but partly because we were overwhelmed by uncertainty as to what the future might hold for those babies. As I scanned through the baby book, I studied the detailed account of immunizations that we faithfully made certain Alex had, and I wonder if our lives would have been different had I not been so diligent. Having Alex vaccinated exposed him to the preservative, thimerosal, which was likely responsible for the mercury poisoning we discovered he had when we had him tested at age nine. We will probably never know how much damage those toxins might have had on his developing brain.

Near the end of the baby book, I found a brief narrative that I wrote a few years after Alex was diagnosed with autism summarizing what had transpired during those years I left spaces blank. I wrote the following explanation for what had happened to Alex: “At age four, Alex was diagnosed with hyperlexia, an autism spectrum disorder characterized by precocious reading skills. (Alex began reading at age three.) and delayed language and social skills. He began speech therapy at age four years, three months, and he began occupational therapy for delayed fine motor skills and sensory defensiveness at age four years, ten months.” The objectivity in this description belies the range of emotions I have felt through the years in dealing with autism. Had I known what I know now when I wrote that paragraph, I could have faced the future with far less fear and even greater hope. Whenever I consider what the future holds for Alex, I remember that he eventually learned to recognize Ed and me, reach for things he wanted, and speak thousands of words. While Alex masters skills on his own time table, God teaches us patience. With anticipation and faith, we wait for the next milestone to be met and celebrate how far he has already come.

“And I am certain that God, who began the good work within you, will continue His work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6