Waiting Time

 

Around here, we live by the clock, the calendar, and the schedule. For Alex, running on time, knowing what day it is, and being prepared for activities ahead are crucial to his daily existence. If not for the numerous clocks throughout our house and his wristwatch, calendars easily accessible, and his daily schedule posted on the refrigerator, Alex would become extremely anxious waiting for whatever was next. To be honest, he gets that from me, who also thrives on the comfort of clocks, watches, calendars, and schedules.

In fact, we can tell when Alex is more anxious because he will consult his beloved time keepers more often, making certain that everything is running on time and making sure he knows what’s happening next. Unfortunately, life doesn’t always go exactly as planned––people may run late, appointments may change, and a power outage might require the resetting of the electric clocks.

Sometimes reality doesn’t jive with our expectations, which can lead to frustration and disappointment. For example, as I changed our calendars from October to November last week, I realized that Alex’s loss of appetite has now lasted six months. When he began eating fewer foods in May and self-limiting his diet that had always been excellent to only a few items, I thought this phase would last only a few days, maybe a few weeks.

By the end of May, Alex still had not returned to his usual varied diet and healthy appetite, so we took him to the doctor, who diagnosed him with thrush. Certainly, the pain thrush can cause in the mouth and throat would explain Alex’s sudden resistance to eating, and we thought that the anti-fungal medication would clear up this yeast overgrowth and make him want to eat again within a few weeks.

However, this bout of thrush has been a doozy, and two more doctor visits and more rounds of anti-fungal medication were warranted. So tenacious is this yeast overgrowth that his doctor has him on maintenance doses of medication twice a week through February. Even though his mouth looks better and the secondary indicators of yeast overgrowth––dandruff and acne––have improved, we still occasionally see some behaviors associated with thrush, namely irritability and increased anxiety. Moreover, Alex still hasn’t returned to his normal eating habits.

Currently, he drinks smoothies made with Rice Dream nondairy ice cream, coconut milk, strawberries, and protein powder for breakfast. For lunch he eats applesauce and raspberry coconut milk yogurt. For dinner he eats applesauce and scrambled eggs with spinach and herb seasoning. For an evening snack he drinks a lemon Italian ice and another strawberry smoothie. While this makes meal planning for him simple since he’s basically eating the same things he’s eaten for months, we would prefer that he return to his previous diet where he ate nearly everything except popcorn. Moreover, one of his favorite things to do was to eat at various restaurants, but his limited diet has kept him from this favorite family pastime.

On Wednesday, realizing that another month has passed without Alex’s appetite improving, I felt frustrated, disappointed, and overwhelmed––three emotions I try to avoid. Why isn’t Alex’s appetite back to normal after all these months? Why won’t this thrush go away for good? Why does everything seem to take so long? What else do I need to do to make him better? As these questions raced through my mind, I could only answer the last one. I remembered the phrase I hear Alex say so often: “Wait and see.”

As Alex’s mom and advocate, I constantly seek ways to make him and his life better. However, sometimes I must remember that despite my need to control and offer helpful advice, God has this all figured out without my well-meaning help. Unlike me, God doesn’t need to read all the latest research in autism; He created the universe. While I’m impatiently waiting, God has already set the appointed time. What God has planned for Alex is greater than anything I could imagine, and healing will allow Him to show His glory. I just need to have the same trust and faith in Him that Alex does.

While six months can seem like a long time when waiting for something to happen or change, in reality, it’s not that long. Perhaps another six months will pass before Alex feels like eating more foods; we’ll have to wait and see. Perhaps tomorrow he’ll wake up and ask for his favorite food, shrimp, and devour it happily after not having eaten it for more than half a year. I don’t know. As we change our clocks back to Standard Time today, I’ll be praying that, like Daylight Savings Time, this time of illness was a summer thing to be put behind us. We will wait and see.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1

Measuring

Alex makes sense of the world by numbers. Perhaps because words don’t come easily for him, he relies upon numerical values to quantify, rank, and understand how various elements relate to one another. Like a driver’s license, he requires vital statistics when it comes to people’s identities: age, height, and weight. Knowing a person’s blood pressure would be an added bonus for him. He’s even created his own system for defining people’s voices, based upon volume and pitch, which he calls “dropodos.” In fact, recently, he asked me to compile a list of people he knows so that he could assign each of them a dropodos value, and he reviews this list daily. Somehow this ranking he’s developed helps him to remember a quality he finds interesting about each person.

This past week, Alex has decided that he needs new measuring tools. One day, he asked me for a ruler, and when I brought him one, he told me that he wanted a red one. Since red is his current favorite color, I suppose his request wasn’t surprising. I think he just wanted a new ruler, and asking for something he knew we didn’t have was a way to get what he wanted. In addition, he decided he wanted “a really long tape measure.” Because I don’t want him to bend the tape or cut his fingers on a metal construction measuring tape, I had given him a sewing measuring tape made of plastic that was safer. Not satisfied with its five-foot length, Alex asked me to look for longer measuring tapes online. With a quick Google search, we discovered a quilting measuring tape that was like his sewing measuring tape but twice as long. Moreover, a little more searching revealed that our local Wal-Mart carried those 120” quilting tapes in stock for only about two dollars. I’m not sure what he planned to measure that was ten feet long, but he was delighted when we took him to Wal-Mart and found both a red ruler and the quilting measuring tape.

Besides measuring length, Alex also values measuring time. As I have described in previous blog entries, Alex loves clocks and finds the concept of time fascinating. A few weeks ago, he asked me to order a book on the history of clocks, and we found Time’s Pendulum: From Sundials to Atomic Clocks, the Fascinating History of Timekeeping and How Our Discoveries Changed the World on Amazon.com. This book seemed tailor-made for Alex, and when it arrived, he happily began reading about the evolution of devices that measure time. He even fell asleep that night holding the book. This week, my mom commented that someone who cares as much about time as Alex does should wear a watch. Over the years, we’ve tried to convince Alex to wear a watch so that he doesn’t have to keep asking us what time it is. Probably because of his sensory issues, or perhaps because he just likes to make conversation by asking what time it is, Alex has refused to wear a watch. However, this week, when I suggested that he might like to have a watch so that he can check the time himself, he was receptive to the idea. Once again, we went online, searching for an inexpensive watch that met his criteria—digital with time, date, and a chronograph, or stopwatch, function. I also knew that he would be particular about the texture of the watchband, so we found him one that had a softer fabric band with a Velcro closure he could adjust himself, instead of relying on us to loosen or tighten a buckle. With another trip to Wal-Mart yesterday, we found the watch he wanted, and he patiently waited for us to figure out how to program the watch for time and date (with directions that were about as complicated as those to defuse a bomb, I’m guessing!) and then proudly wore his new timepiece all day. When we explained that he couldn’t wear his watch in the shower or to bed, he seemed disappointed. Although we tried to convince him that he should put his watch on his dresser overnight, he insisted on sleeping with it in his bed, as he likes to do with his various prized possessions. As soon as he awakened this morning, he wanted help putting on his watch. Apparently, he has decided that wearing a watch is a good idea, after all.

Another more unusual request Alex has made this week goes along with his interest in measurement in a less obvious way. Earlier in the week, Alex asked me to find the story of Goldilocks and the Three Bears. Although I couldn’t find a storybook of that old tale I used to read to him when he was little, I was able to find the text of the story online, which he requested I print for him. Reading the story to himself was not satisfying, though, because he wanted me to read the story aloud to him, complete with the voices of Mama Bear, Papa Bear, Baby Bear, and the nosy little Goldilocks. (Actually, I’m somewhat surprised he hasn’t assigned these characters with their own dropodos levels.) Nonetheless, he asked me to read the story to him several time, each time smiling ear to ear as he listened to me say the characters’ lines with different intonations. His favorite line, however, was every time Goldilocks finally decided after two extremes that something was “just right.” Since he seemed to enjoy revisiting this story from his childhood, I found a copy of the book at Wal-Mart (while we were buying the red ruler and quilting tape measure, which meant our total cost for Alex’s current whims was only about five dollars) with nice illustrations for him to enjoy as well as the story itself. Several times a day, Alex brings me the storybook and asks me to read “the book about porridge,” and I’m pleased to fulfill his simple request, especially since it seems to bring him so much joy. Yesterday, he asked me if we could call the bears and Goldilocks on the phone, and I’m guessing that he was hoping to hear their distinctive voices. I had to explain to him that they weren’t real, but were just characters in a book. Fortunately, he took the news in stride, and I found his childlike innocence endearing.

In trying to analyze what Alex likes so much about Goldilocks and the Three Bears, besides my reading with the varied voices, I think he really likes the idea of “just right.” When we run water for his bath or shower or check his food temperature, Ed and I always make sure it’s not too hot or too cold, but that it’s just right. When we buy him shoes or clothes, we make sure they’re not too big or too small, but just right. When we find him a pillow for his bed, we know that it cannot be too hard or too soft; it must be just right. In trying to make Alex’s life comfortable and safe, he, like Goldilocks, has developed a preference for all in life that is “just right” and knows that measuring will allow him to know the extremes as well as the comfortable middle he has trusted us to find for him. Now he’s ready to find what is just right for himself. Of course, he knows we will be right behind him, guiding him, praying, and making sure that he can find the “just right” for all things in his life so that he may enjoy all the good things life has to offer.

“This will continue until we all come to such unity in our faith and knowledge of God’s Son that we will be mature in the Lord, measuring up to the full and complete standard of Christ.”  Ephesians 4:13

Daylight Savings Time

“Time, time, time, see what’s become of me while I looked around for my possibilities…Hang onto your hopes, my friend. That’s an easy thing to say, but if your hopes should pass away, simply pretend that you can build them again.”
--“Hazy Shade of Winter” by Paul Simon

On this first day of daylight savings time, I admit that I dread this annual “springing forward” where the clocks are turned ahead one hour. Since I have to get up by six o’clock every morning to get ready for my job as a teacher, I know that for the next few weeks, I’ll be waking up in the dark again after the past few welcome weeks of awakening to early sunlight. I also know that my body will need a few weeks to adjust to going to bed earlier and getting up earlier as my system tries to reset its circadian rhythms.

I’m certain that those who decided daylight savings time is a good idea probably don’t have to get up as early as my colleagues and I do. In doing some background reading about the origins of this concept of shifting time, I ran across an online article [To read this article, click here.] from National Geographic that indicates Ben Franklin first came up with this idea of making better use of daylight. During World War II, the United States mandated daylight savings time as a way to save resources. In my home state of Indiana, until 2006, most of the state opted not to go on daylight savings time, so in the spring, summer, and early fall, all counties were on the same time, but in the late fall and winter, a handful of counties were an hour behind the rest of the state. Interestingly, a study in Indiana showed that daylight savings time really did not save energy, one of the primary reasons given for moving the clocks ahead one hour.

Besides my resistance to get up earlier in the dark, I always fret about how the time change will affect Alex, who is sensitive to changes. Although he has understood the concept of daylight savings time and has been very aware of telling time, even when he was little because he loved clocks, Alex doesn’t always readily adapt to the time changes in the spring and fall. Over the years, we have tried adjusting his bedtime by a few minutes each night in the days prior to the time changes, and that never really seemed to make a difference. Like his mother, within a few weeks, he simply adapted to the changes and was able to adjust his sleeping habits.

This year, we’re hoping that daylight savings time is the change Alex needs to reset his internal clock that has been off for several weeks. Like a preschooler, he has been getting sleepy shortly after supper and going to bed in the early evening, which means he also awakens between 5:30 and 6:00 A.M. Also, he has been insisting that he wants to eat dinner about an hour earlier than we normally eat, telling us he’s hungry around 4:00 or 4:30 when we usually eat dinner between 5:00 and 5:30. I guess because he starts the day about an hour earlier than he used to has completely thrown off his internal clock and shifted his basic routines of sleeping and eating forward an hour. With fingers crossed and prayers said, Ed and I are hoping that shifting the clocks forward an hour will remedy this situation so that he’ll get up around 7:00, go to bed after 9:00, and be ready to eat dinner at 5:00 or 5:30. In fact, we were tempted to not change the clocks so that Alex would rely on his biorhythms instead of the actual time. So, we shall see how he adapts and hope for the best. Maybe this daylight savings time will be one to celebrate instead of to endure. If Alex adapts nicely, it will be worth getting up in the dark—at least that’s what I’ll tell myself tomorrow morning as I stumble out of bed an hour earlier than my body is used to doing.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1