Playing Detective

 

When I was a kid, I loved reading The Happy Hollisters series of books in which a family of five young siblings somehow finds themselves involved in mysteries they need to solve. Perhaps I was initially drawn to this fictional family because the oldest daughter is also named Pam, but I stuck with the series, reading every one I could find at the public library, fascinated by the ways these kids put together the clues to get to the bottom of the mysteries. Little did I know that as an adult, I would be solving mysteries of my own.

Because not enough is known about autism and because Alex’s communication skills are weak, I often find myself sifting through clues, trying to discern why he does some of the things he does. By putting together the research that I have done over the years––especially medical research––with careful observation of Alex, I can usually come up with potential reasons that have reasonable validity. Sometimes, however, I must sort through a wide variety of clues before I know the real reason.

Recently, Alex has been a little off. While his behavior has not been that bad, he just doesn’t seem quite like himself. Because we never want behaviors to escalate, we always try to get to the bottom of the problem right away. After having such a wonderful summer where he was content and cooperative, we didn’t want him to regress. Therefore, I went into detective mode and tried to figure out what was causing small changes in Alex.

Usually the culprit for behavioral challenges is yeast overgrowth in his digestive system, namely thrush, which makes his mouth and throat sore, causing him to be irritable. After dealing with yeast flares for more than three years, we recognize the symptoms and know that we must treat him immediately with antifungal medication to ease his discomfort and to prevent increasing agitation. Our experience has also taught us that yeast flares bring “abcd” symptoms: acne, behavior issues, coating of tongue, and dandruff. Fortunately, we didn’t see any of the telltale signs this time. Moreover, Alex seemed to be his usual pleasant self in the evenings, so an ongoing problem like yeast seemed unlikely. Therefore, we crossed yeast flare off our list of potential causes.

Another reason for Alex to be irritable is change. From past experience, we know that changes in routines can cause negative changes in his behavior. Although we considered that our returning to our teaching jobs after the summer off work might have bothered Alex, he seemed to be adapting to the transition reasonably well. In addition, he had maintained his afternoon schedule throughout the summer: Tuesdays with Jennifer for behavioral therapy, Wednesdays with Jessica for respite, Thursdays with Noel for music therapy, and Fridays with Jennifer for recreational therapy. Since his schedule had stayed the same, he didn’t have to adapt to any changes. In addition, we had not made any changes to his medications or supplements, so we couldn’t point to those as potential triggers for his being a little different.

After ruling out obvious causes, I then focused on potential environmental changes. While Alex doesn’t show typical seasonal allergy symptoms, such as sneezing, runny nose, or watery eyes, he has in the past acted irritable during allergy season. After checking the Weather Channel website and discovering that weed pollen has, indeed, been moderate to high in our area the past couple of weeks, I suspected that pollen could be bothering Alex. However, he usually does not want to be outside when pollen bothers him, and this week he has specifically requested to go outside in the yard, enjoying the fresh air. In fact, being outside seems to put him in a good mood, so pollen is probably not bothering him. Also, I suspected that some of the weather we’ve had lately could have affected him because he is like a human barometer who senses every change in air pressure, often acting irritable when the pressure is very high or low. Despite thunderstorms and a deluge of rain, he didn’t seem bothered by the weather.

Aside from the natural environment, Alex can also be annoyed by changes in the economy. Since he watches the business news channels faithfully, he is aware of oil and gas prices, stock market trends, and interest rates. At times, he has been very upset by high oil and gas prices and drops in the stock market. However, he has learned to take economic news in stride and not let changes upset him. In fact, he often compares various fluctuations to the stock market, knowing that things naturally go up and down, making observations, such as, “Temperatures are like the stock market; they go up and down.” Since Alex has come to realize that the economy fluctuates and watches the news without getting upset, we decided that he was not affected by the stock market, either.

After ruling out all of the usual suspects, I had to look deeper to figure out more clues and see what might be behind them. First, we noted that he typically seemed irritable in the morning and late afternoon, and he was at his best in the evenings, especially after a big dinner. During these times when he seemed off, we noted that he was anxious, impatient, fatigued, mentally foggy, and shaky. Although he has been getting a good night’s sleep every night, he still seemed tired in the morning. However, he would be energetic and active physically and mentally every evening. I wondered if he needed for his morning medications to take effect, but even when they should have been helping, he still was not quite himself. Moreover, when he was at his best every day, his medications would have been wearing off. I even considered that some of these symptoms could be side effects of some of his medications, especially the tremors that go along with lithium that he takes to regulate his moods.

Another factor I considered was the change in Alex’s waistline. Since Alex weighs himself every night before he goes to bed, I noticed that he has lost some weight. Although he looks quite healthy and has lost the belly weight caused by some of the medications he takes, something has caused him to drop those pounds. In thinking about his eating habits, I realized that once his obsessions about eating for set amounts of time or insisting upon three servings of food every meal had passed, he wasn’t eating as much as he used to eat. In addition, he didn’t seem interested in eating breakfast, nor was he snacking as much as he used to. Not wanting to force him to eat, we trusted that he knew what his body needed, but perhaps this was the culprit.

Realizing that he was at his best after eating a large dinner, I began to wonder if Alex was off whenever his blood sugar was low. After some quick research, I discovered that symptoms of low blood sugar include the following: fatigue/sleepiness, shakiness/tremor, anxiety, irritability/impatience, mental confusion, and dry lips. Alex had all of these symptoms. Consequently, I decided we needed to change his eating habits to see if eating more would alleviate the symptoms we’d been observing.

This week, Ed has been fixing Alex breakfast that includes fresh fruit every day, and we have increased the amount of food he eats for lunch, as well. In addition, we have been offering him healthy snacks, such as hummus, tomatoes, and bananas, all of which he especially likes. After just a few days of this new healthy diet, he already seems better. He has been more active mentally and physically in the mornings, and he doesn’t seem as anxious and irritable in the afternoons. Thankfully, he can afford to gain some extra weight, so we can feed him more without worrying about that consequence. Hopefully, we have figured out the problem and the solution, both of which are fairly simple. While I’m thankful that my childhood reading habits taught me the value of looking for clues and trying to solve mysteries, I’m even more grateful that God shows us the way and gives us the wisdom to help Alex be his best.

“Listen as Wisdom calls out! Hear as understanding raises her voice!” Proverbs 8:1

Eleven Random Things

1.  One of Alex’s new quirks is to blurt out types of foods suddenly and randomly. He’ll be sitting quietly, seemingly in deep thought, and suddenly say, “Mango,” or “Polish sausage,” or “Cupcakes.” Apparently, he spends a great deal of time thinking about food. If we ask him if he’s hungry, he’ll usually tell us that he’s not, he’s just thinking about food. Finding this random chain of thought interesting, I thought I’d similarly share some random things that have occurred to me this week, most of which have nothing to do with food—I’ll leave that to Alex.

2.  The one random thing that does have to do with food is Alex’s new love of “porridge.” I had mentioned in a recent blog entry that Alex has rediscovered the story Goldilocks and the Three Bears, which he likes me to read to him again. I think he’s amused that I can do three different voices for the bears—Daddy Bear’s deep voice, Mommy Bear’s medium voice, and Baby Bear’s squeaky voice. Apparently wanting to emulate the bears and Goldilocks, he decided that he would like to eat porridge, which took some research on my part to find what porridge is and whether he could eat it on his gluten-free, milk-free diet. The closest approximation I could find for porridge is a gluten-free oatmeal made with water instead of milk. While I wouldn’t touch the mushy stuff with a ten-foot pole, Alex seems to think he has a real treat in porridge, one of his new favorite foods.

3.  The past few weeks, Alex has taken up sleepwalking, which is a bit disconcerting because awakening to a six-foot-tall, half-asleep young man prowling in the hallway in the middle of the night is frankly creepy. Since we don’t want him tumbling down our rather steep stairs to the main floor, Ed and I have been sleeping lighter, listening for Alex to open his bedroom door and start his nightly jaunts. Fortunately, he’s docile and cooperative about being led back to bed, and all three of us are able to go back to sleep quickly afterward. We’ll just be glad when he gets past this phase.

4.  Another recent phase is Alex’s renewed interest in the Disney movie Shrek. When he was younger, Shrek was his favorite movie; in fact, I think Shrek is one of the few movies, other than the Disney cartoons that he watched when he was little, that he has watched in entirety and repeatedly. Perhaps feeling nostalgic, Alex has watched the Shrek movie trailers on You Tube many times the past few weeks. Every time, he finds them really funny, as if he’d never seen them or heard the jokes before. I think it’s sweet that just watching the short clips brings a smile to his face; how nice that something so simple makes him so happy.

5.  Harkening back to his younger days, Alex has also been asking about his childhood doctor. Although she retired a few years ago, Alex often mentions her because he felt a close bond with her during the nearly ten years she took care of him. Last month, I heard the sad news that she had passed away from cancer, which was hard for me because she had been instrumental in helping Alex deal with his various medical conditions and supporting us as his parents. She genuinely cared about her patients on a personal level and did everything she could to restore their health. I wasn’t sure how Alex would take the news of her passing, but when he asked me about her, I explained that she had gotten sick, died, and gone to heaven. Alex seemed to mull this over, satisfied that she was in a better place. However, he did ask if he could call her in heaven, and like Alex, I wish we could call her to let her know we’re thinking of her, and to be truthful, to get her medical advice occasionally.

6.  Speaking of phone calls, in my blog entry a few weeks ago “Woman’s Day Magazine,” I discussed how talking on the phone with the writer of the article, Marjorie Ingall, was amazingly easy, even though we’d never met. This week I read Marjorie’s blog entry “pam and alex” [To read her blog, click here.], in which she shares that she felt a similar comfort level in chatting with me. As she points, out, even though we differ in some key areas, we found these differences didn’t matter. We liked each other and enjoyed talking to one another. I had to laugh at her description of my blog as having “a whole lotta Jesus going on” and had to agree that I, like she, “felt comfortable instantaneously, two seconds into our first conversation.” And, Marjorie, if you’re reading this, you rock, too.

7.  One of the surprise benefits of having our family featured in the November issue of Woman’s Day magazine in the article “Caring for Alex” was that a close friend of mine from junior high who now lives in California saw the article and contacted me. Even though we haven’t been in touch for more than thirty years, we found common ground in our shared past and in our present day as mothers trying to do what’s best for our children. Guided by our faith and shaped by the difficulties our children face, we can now support each other through prayer and renewed friendship.  We’re both certain that God brought us together again; no randomness was involved here.

8.  This week, we were uncertain as to how Alex would react to Halloween and trick- or-treaters coming to our door. When he was little, Alex loved Halloween, dressing up in costumes I made for him, decorating pumpkins, and going trick-or-treating. As he got older, he enjoyed watching kids come to our house for treats. Since Ed had to teach on Halloween night, Alex and I were left to give out the goodies. Right before the designated trick-or-treat time, Alex suddenly had an anxiety attack and started saying repeatedly that he wanted “to be one, two, or three again.” I suppose he wished he were little enough to dress up and go trick-or-treating himself. Fortunately, he was able to pull himself together fairly quickly and then seemed to enjoy watching kids come to our door. It’s hard to be a little kid trapped in a young man’s body.

9.  On the other hand, Alex, who will turn twenty-one next month, participated in a rite of passage that delighted him as he voted for the President for the first time. With his interest in politics and Presidents, Alex has taken voting seriously and has participated in every Election Day since he turned eighteen and became of legal voting age. However, he had to wait until this year to have his chance to vote for the President. Watching his delight and pride in voting was truly a special event that made Ed and me proud as parents. With Election Day on Tuesday, we’ll see if his candidate wins, which will make his first Presidential election even more special.

10.  This week, we also encountered another calendar milestone that Alex usually anticipates happily—the change from Daylight Savings Time to Standard Time. With the changing of the clocks back one hour, we’re never certain how this will impact Alex’s sleep patterns. I always debate as to whether we should try to keep him awake longer or not. Fortunately, he made the decision for me, as he wound up staying up later because while he was waiting for Ed to come home from the Valparaiso University basketball game, he developed hiccups that kept him awake. He seemed not to be bothered by the hiccups, which was good, and Ed and I were surprised when he clearly asked a question (especially since lately he has limited his speech to only a few words often said quietly), “What was the score of the basketball game?” Maybe hiccups jolted his brain so that he could verbalize his thoughts better, or maybe he’s more alert when he stays up a little later. Whatever the reason, hearing him ask a good question was pleasant for us.

11.  And finally, this week, we found out that enrollment in the day program where we’re hoping to place Alex seems to be on hold even longer. Originally, we were told that they wanted a behavioral assessment and behavior plan in place prior to enrolling him. Now that the assessment and plan are nearly complete, we have been told that the day program currently has no openings.  While we still believe that this program will be good for Alex, Ed and I are convinced that the delay has a purpose to give Alex time to get better so that he’ll be successful once he gets there. I recently saw a quote that has helped me deal with my tendency to become impatient when I have to wait for things: “Faith is not just trusting God, but also trusting His timing.” I’m sure God has a plan, and we just wait for the right time.

 “And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.”  Romans 8:28

Visiting

Since Alex came home from the hospital in June, he wants to be with Ed or me almost constantly. I think he is making up for lost time, the days he spent in the hospital where we could only see him for an hour or two during visiting hours. Our presence seems to reassure him that he is, indeed, finally home. In fact, the rare times that he is alone, he’ll come looking for us and ask us to “visit,” clearly a reference to his hospital stay. During the months leading up to his hospitalization, he wanted very little to do with me, which was sad and confusing, as he would inform me, “Mommy is leaving now,” which was essentially telling me to “bug off” and leave him alone. Instead, he just wanted Ed to take care of his needs, which I figured was some type of developmental phase where he needed to separate from his mother and identify with his father. Nonetheless, I missed him for a long time.

Now, I spend several hours a day with Alex at his request. Most of the time, we just sit together--sometimes he’s sitting and thinking while I’m reading; other times, he has me read aloud to him. While he used to spend hours reading alone, I think the medications to keep him calm also may make focusing on reading difficult, so he prefers listening to me read instead. Also, I think he enjoys this as an activity we can do together, rather than the solitary act of reading. Sitting with him is an interesting experience because I gain insights into how his mind works as he comments on various things. For example, he often blurts out random foods: guava, cupcakes, salami, bananas, meatloaf, etc. Most recently, he’s added porridge to the list of foods, inspired by his recent revived interest in the story of Goldilocks and the Three Bears, I’m sure. I suppose he’s frequently thinking about what he wants to eat because he’ll also say the names of random restaurants: Noodles and Company, Culvers, The Coop, Martini’s, etc. Although the food blurting continues throughout the day, the restaurant blurting usually only happens in the afternoon, prior to dinner. I guess if he doesn’t have a lot to occupy his mind, food is as good a topic as any. Alex has always shown an interest in food, watching the Food Network Channel from the time he was a toddler and referring to all of their chefs on a first-name basis. Fortunately, his appetite and willingness to eat a variety of foods have always been excellent, and he has not been affected by the dreaded medication side effect of potential weight gain, maintaining his slender, lanky build.

Another activity Alex requests is making random lists. He’ll give me a topic, such as animals, NASCAR drivers, or famous people’s ages, weights, and heights. Sometimes, we’re able to come up with the information on our own, and other times, we have to do Google searches to get the data he wants. Yesterday, we worked on coming up with an animal for every letter of the alphabet. I was amazed how quickly he could come up with the names of animals, often unusual ones, such as armadillo and zebu, especially since he’s never shown a great deal of interest in animals, unlike most children. The only letters that stumped us were u, v, and x, which led us to a Google search for those elusive animals to complete our alphabetical list.

Besides Google searching, we put my laptop computer to good use for other shared pastimes. Alex has always enjoyed online shopping, especially searching for books and gadgets on Amazon. Lately, he’s been checking out everything from NASCAR driver banners to hang in his bedroom to books about time to talking clocks. Fortunately, he had not spent all the money in his Amazon account that his aunts and uncles gave him last December for his birthday and Christmas, so he’s been able to purchase many of these items his heart desires. Of course, he likes to comparison shop, making sure we get the best deal, and this allows him to savor the experience even longer. In addition, I always make him wait twenty-four hours before making his final purchase to make sure that’s how he wants to spend his money, which is another way to make the shopping fun last.  Another favorite website we explore together is You Tube, primarily to watch music videos of his favorite singers. This week, we’ve watched nearly all of country music singer Shania Twain’s videos, and I introduced Alex to one of my guilty pleasures, videos from the 1970’s television show and its manufactured musical group, The Partridge Family. While Ed will probably think I’m corrupting Alex by exposing him to this kind of pop music, I feel Alex needs some relief from the Bob Dylan music that he listens to with Ed.

At some point, Alex’s need to be with Ed and me almost constantly will fade, and we will respect his wishes to be alone again. However, until that time, we will stay close at hand, entertaining him and just being there for him. Sometimes, I will leave him for a few minutes to get something or do laundry, only to find he has followed me, waiting patiently for me to rejoin him. Yesterday, as I was putting clothes in the washer, he followed me down the stairs and asked me to come stay with him. After I started the washing machine, I followed him and honored his wish to join him, which made him happy. Wondering when he thought he might get tired of having me around, I asked Alex how long he’d like me to stay, thinking he’d give me some exact amount of time. Without hesitation, he replied, “Stay forever.” Oh, Alex, I wish I could stay with you forever; I just pray that I’ll be with you as long as you need me.

“And I am sure that when I come, Christ will richly bless our time together.” Romans 15:29

Snacks

Even though Alex is on a restricted gluten-free and casein-free diet, he is a good eater with a healthy appetite. We are fortunate that he not only understands he cannot eat foods that contain glutens (such as wheat) or milk products, but he is also willing to try a variety of meats, vegetables, and fruits. Moreover, he likes rice, which is his staple grain item. The only foods he will not eat are popcorn and mashed potatoes, and he’s not crazy about broccoli. In addition to breakfast, lunch, and dinner, Alex has instituted three snack times per day at regular intervals: around 3:30 in the afternoon during the first commercial break of the game show Jeopardy, 8:00 in the evening (which he sometimes refers to as dessert), and 9:00 in the evening. This final snack time is in conjunction with his nightly supplement pills, which he prefers to take with food. Although we have gone through times when Alex was indecisive and had trouble making up his mind what he wanted, he now likes to be offered choices of what he can have for a snack, and he quickly chooses from the options we give him when he asks.

Since most baked goods contain wheat flour and milk, Alex can’t eat those for snacks, but he sometimes likes to have the Kinnickinnick Toos, which are gluten-free and casein-free sandwich cookies that are tasty. Recently, I found a recipe for peanut butter fudge he can eat that is easy to make, and he loves it. I just microwave a 16 ounce jar of creamy peanut butter for one minute, and then microwave a 16 ounce tub of Duncan Hines classic vanilla frosting for one minute. After that, I stir the two ingredients together, pour the mix into an 8 x 8” pan sprayed with Pam cooking spray, and put it in the refrigerator to cool. I was delighted to find such an easy recipe, and he was happy to have a sweet treat for snacks. While Alex doesn’t eat most candy because it often contains milk products, he does like to eat marshmallows, especially Kraft marshmallows that are in special shapes. Before Christmas, they make marshmallows in pale green Christmas trees and pastel red stars. The other day I bought him a bag of heart-shaped strawberry marshmallows made for Valentine’s Day. He is also a big fan of marshmallow Peeps and likes the various shapes they make for holidays: blue bunnies for Easter, pink Valentine hearts, orange jack-o-lanterns for Halloween, and snowmen for Christmas. One of his quirks is that he likes his snacks in threes or multiples of three; for instance, he wants to have three Peeps marshmallow treats or six Kraft marshmallows, which are smaller than the Peeps. I’m guessing that the choice of three and its multiples has to do with his love of pi, which, of course, begins with three.

Besides sweet snacks, Alex also likes fruit, including bananas, apples, oranges, and grapes. He especially likes to eat grapes with Ed when they are watching sports on television. Alex will wait patiently until Ed offers him some grapes and then happily gobbles them down. He reminds me of a dog watching and waiting for people to drop their food so that it can have a snack of its own. Most of the time Alex prefers to eat his snack sitting at the kitchen table. When one of his snack times is imminent, he’ll walk to the kitchen and pace, waiting for us to offer him something to eat. If we don’t catch his pacing as a clue, he’ll come ask us, “How ‘bout a snack?” to remind us that he’s hungry. He also prefers to eat most snacks, other than chips, marshmallows, and cookies, with a fork, probably because his sensory issues make him dislike touching food and getting his hands messy. Other than when he’s sharing grapes with Ed, he eats all kinds of fruit with a fork, and he even eats his peanut butter fudge with a fork instead of just picking it up and taking bites of it. Recently, he broke away from a rigid routine of snacking by eating Tostitos round bite-sized tortilla chips directly out of the plastic container we use to store them instead of picking out six perfectly round ones with no broken edges and lining them up on a napkin. While this may not seem terribly significant, I see his willingness to break from a compulsive pattern he’s had for years as progress. By not lining them up and by eating more than his usual self-allotment of six chips, he’s moving away from the autism stereotype of needing to do things the same way all the time. An added bonus is that he’s willing to eat all the chips in the bag, even the broken ones, which means that it’s no longer up to Ed and me to finish off the bag for him. Fortunately, he can eat whatever he likes and remain slender, which is a blessing for someone who likes to eat six times a day, and Alex seems to savor his snacks, just as he does his meals.

“The godly eat to their hearts’ content, but the belly of the wicked goes hungry.” Proverbs 13:25