Moving in the Right Direction

This week has kept us busy with monitoring Alex’s health and progress, but we seem to be moving in the right direction, which is a blessing. Last Sunday afternoon, Alex decided that he wanted to watch the NASCAR race on television with me. Although he has been a NASCAR fan for several years, lately he hasn’t watched the races on television. In fact, he hasn’t watched television much at all since he came home from the hospital in June. I suspect that his medications affect his attention span and make focusing on a show difficult for him, as he can’t seem to read for very long, either. Nonetheless, he managed to stay alert through the afternoon and follow the nearly three-hour race to its end, enjoying himself thoroughly, especially since his new favorite driver, Jimmie Johnson, came in second place. 

His renewed interest in NASCAR wasn’t limited to Sunday, however, as he has been asking for new NASCAR banners to hang in his bedroom.  Recently, he decided he wanted a Jimmie Johnson banner for his room. Searching online, we found a three-foot by five-foot flag with a picture of Jimmie’s car. Using Christmas and birthday money he still had left in his Amazon account, he had me order the chosen NASCAR #48 car banner, which now hangs above his bed and looks like it’s going to run over him in his sleep. This week, he also had me order a banner illustrating last year’s amazing Daytona 500 win by rookie Trevor Bayne, who is about the same age as Alex. When it arrives next week, he’s already picked out a spot on the wall above the head of his bed to hang this new decoration. His renewed enthusiasm for NASCAR certainly beats his obsession with gas prices, and I’m glad to see him excited about sports again.

Besides showing interest in leisure activities, another sign of progress came on Tuesday when his behavioral therapist, Melissa, came to work with him. They spent nearly an hour together working on a social story entitled “Alex Goes to Lakeside,” a reference to our plans to send him to a school/day program for adults with disabilities. Because he needed to have a complete behavioral assessment before he would be considered for enrollment in the program, we have been working with the behavioral therapist to develop a formal plan, which has taken a couple of months. With the behavioral plan nearly complete, Melissa felt we should start preparing Alex for going to Lakeside and reminding him what expectations they would have of him regarding his behavior.  Melissa and Alex worked together on a booklet as she asked him several questions about what kinds of things he thought would be fun at Lakeside, how he would make friends, and how he would need to behave. Her enthusiasm and sweet personality engaged Alex the entire session, and he worked very cooperatively with her to complete the booklet. Now we hope that when he eventually does go to Lakeside, he’ll be equally cooperative and pleasant with the staff there.

Later that afternoon, I received a call from the office of the nurse practitioner who oversees Alex’s psychiatric medications. I thought perhaps the call was to remind us of our appointment later in the week; instead she wanted to give us the results of Alex’s blood tests from last week. Thankfully, all of his tests were normal, except his thyroid function is low. Consequently, she wants to start him on thyroid medication. Having been on thyroid medication myself for fifteen years since the removal of most of my thyroid, I recognized some of the symptoms Alex has shown that indicate hypothyroidism. Lately, he has been lethargic, has dry skin and hair, and he seems to be cold a lot of the time, wrapping himself in blankets to keep warm. I thought some of these symptoms might be related to side effects of his medications, but low thyroid also explains them, too. The next day, his new family doctor’s office also called to give us the results of his blood tests, telling me about his low thyroid function and need for medication to treat the hypothyroidism. Impressed that both offices called us right away with the test results and a plan to address his thyroid issues, I was also glad that they agreed upon the course of treatment.

On Thursday, we took Alex to his psychiatric nurse practitioner for his scheduled three-month update. She was pleased to see the improvements in Alex and agreed with us that the medications she has prescribed have proven effective in keeping his anxiety under control. We asked her about the occasional tremors we see in his hands, which she attributed to his lithium medication and assured us was nothing to be concerned about. In addition, she told us that the lithium likely caused his hypothyroidism, as well. However, the benefits of lithium in terms of his improved moods outweigh these side effects, and we agreed that he should continue on the lithium. Another concern we shared with her is that his feet tend to fall asleep if he’s sitting for a while. We notice this especially if he’s been riding in the car; in fact, his right foot fell completely asleep during the half-hour ride to her office in Michigan City, and we had to wait for him to regain feeling in his foot before we could leave the car. She suspects that his hypothyroidism may be causing this temporary loss of feeling in his feet and is hopeful the thyroid medication will improve the condition. We are also hopeful that regulating his thyroid will help his lethargy, tendency to feel cold all the time, along with improving his dry skin and hair. At the same time, we always feel a little nervous each time we add a new medication, wondering if any negative side effects may occur. However, my familiarity with thyroid medication from my own experience of taking it makes me less concerned about Alex having any bad reaction and gives me more confidence that he will feel better once his thyroid returns to normal functioning.

Although we would prefer that Alex not have to take medications, we are pleased that he seems to be making improvements in his health and behavior. Not only are we thankful for the healing and progress he continues to make, but we are especially grateful for the professionals God has placed in our path who have provided the expertise, understanding, and compassion we need to help Alex reach his full potential.

“The times of refreshing shall come from the presence of the Lord.”  Acts 3:19

Smoothing Crooked Paths

I’m often amazed how the things we fear and dread often turn out so much better than we think they will. Last Wednesday, we had a busy morning scheduled for Alex. After searching on the Internet and making several phone calls, I was finally able to find a group of family doctors who would accept Alex as a new patient. As I described in a previous blog entry “Is There a Doctor in the House?“ our current family doctor could no longer see Alex after he qualified for Medicaid this summer based on his disability. This led me to Internet searches for a new doctor, starting with a list of doctors who supposedly took Medicaid patients and then looking for those who were taking new patients. However, I discovered when I called their offices, they were not taking new patients with Medicaid, which was frustrating. Fortunately, when I called a local group of three family physicians who operate a clinic known as HealthLinc, I found their office to be welcoming and helpful, setting up an appointment for Alex and apologizing that they couldn’t see him sooner. I was just delighted that we had found a new family doctor for Alex.

In addition to establishing Alex as a new patient, I wanted to have his mouth checked because we have been fighting a yeast infection of the mouth, thrush, all summer with antifungals. In June, we took him to the Saint Anthony ER in Chesterton (as I described in the blog entry “An ‘Aha!’ Moment“) on a Saturday morning with blood in his mouth and dark urine. Fortunately, our experience there was excellent, as the kind and efficient staff quickly diagnosed his issue as yeast-related and gave us a prescription for the antifungal pill Diflucan. A few weeks later, he continued to show signs of yeast overgrowth, so I made an appointment with our family doctor, but when his receptionist discovered Alex had qualified for Medicaid, she bluntly told us we would have to find another doctor. This led us to Saint Anthony Express Care in town, where a sympathetic doctor concurred that Alex had thrush, and she gave us another prescription for Diflucan. In between these visits, Alex’s nurse practitioner who oversees his psychiatric medications called in Diflucan refills, knowing that Alex becomes agitated when the yeast flares. One of my concerns was that Alex was only receiving weekly doses of the antifungal, and I thought he might need daily doses instead. When he was younger and had dealt with a similar yeast overgrowth, his doctor had treated him with daily doses of medication for a month, which successfully cured the problem.

Since I was taking the morning off from work for Alex’s doctor’s appointment, I decided that we would also take him for blood tests that his psychiatric nurse practitioner had ordered. She wants to monitor his drug levels, as well as check his general wellness while he is on the various medications, every few months, and he was due for this lab testing ahead of his appointment with her this coming Thursday. While she had told me he would need to fast ahead of the tests, I wasn’t sure if he could take his medications beforehand, so I called her nurse, who told me he would have to be off his medications for at least ten hours before the tests.  Although Alex is usually excellent about having blood draws, we were uncertain how he would be without his anti-anxiety medication. Therefore, we made the decision to take him to the lab as soon as he rolled out of bed that morning so that he wouldn’t have much time to think about being hungry or nervous before the test. I took a juice box and his pills with us so that he could take them immediately after the tests and prayed that we wouldn’t have to wait long and that he would remain calm, even without his medications.

After having such a good experience with St. Anthony ER in Chesterton, we opted to take him there for his blood tests, as they do outpatient tests, as well. Once again, we were impressed with how pleasant every staff member there treated us and how quickly and efficiently they moved. As soon as we walked in the door, the registration clerk took our information right away, and we didn’t wait but a few minutes when the lab technician came to get Alex for the tests. She was very gentle with him, and he didn’t even flinch when the needle went in his arm. Even though he needed to have five vials taken for the various tests, this procedure took only a few minutes, and we were done. We took him back to the waiting area to give him some juice and his medications, and we were on our way home, thankful that he had done so well for the testing and that everything had gone smoothly, thanks to their excellent staff.

Next we went home for about an hour before leaving for his doctor’s appointment. When we arrived at the doctor’s office, the friendly receptionist had me fill out several forms for Alex, and after I was done with that, a nurse came to take us back so that she could take Alex’s vitals. Once again, he was cooperative and seemed to enjoy having his pulse, blood pressure, temperature, height, and weight measured. Then she led us back to an examining room to wait for the nurse practitioner who would see him. After having been calm all morning, Alex suddenly became agitated about having to wait, even though it was a brief time, and decided he wanted to leave.  As we tried to reassure him that we wouldn’t have to wait much longer, he started ranting about high gas prices and video games that take too long to play, a behavior he resorts to when he is stressed. Thankfully, we were able to calm him down just before the nurse practitioner came to see him. We were impressed with her warm personality and how well she interacted with Alex. As she examined him thoroughly, she would tell him beforehand what she was going to do so that he was prepared. Also, she asked Ed and I many questions and listened to us with a genuinely caring manner.

After she had carefully examined Alex, she agreed that he needed daily doses of Diflucan to address the thrush, and she increased the dosage he’d been receiving from 150 mg. to 200 mg. She prescribed two weeks of the antifungal and indicated that he may need to do another two weeks of medication. Also, she suggested that we replace his toothbrush after a few days on the medication in case he was re-infecting himself, which seemed like a very good idea. If he continued to show signs of yeast overgrowth, she thought he may need to see an ear-nose-throat specialist to determine what was causing the yeast infection, and she told us that their office could provide us with a referral. Walking into this new situation, we were uncertain as to how things would go, but we were very pleased with our experience because we felt the nurse practitioner was not only quite competent but also very compassionate. At the end of the appointment, she complimented Ed and me, telling us that we were doing a good job as Alex’s parents of keeping him healthy, which made us feel good.

Even though we had faced the busy Wednesday morning with some trepidation, not knowing quite what to expect with Alex’s blood tests and doctor’s appointment, we were pleasantly surprised how well everything went. Not only did Alex handle the new situations relatively well, but we were also pleased by how kindly everyone treated us. In times like that, I see the hand of God, placing people in our lives who can help us and making the crooked paths straight. Now we pray that God will heal Alex’s infection and restore his health so that he can be the best he can be.

“I will lead blind Israel down a new path, guiding them along an unfamiliar way. I will brighten the darkness before them and smooth out the road ahead of them. Yes, I will indeed do these things; I will not forsake them” Isaiah 42:16

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

Special Requests

As I have explained in previous blog entries, I have been blessed to be able to teach on a part-time basis since Alex was born so that I can be home with him in the afternoon. An added blessing is that Ed is able to arrange his schedule as a college professor to teach afternoon and evening classes, allowing him to be home with Alex in the morning while I’m at work. I’m sure that some of my colleagues wonder what I do all afternoon while they’re still teaching, but I keep plenty busy dealing with Alex. Besides home schooling him, I find that I spend quite a bit of time fulfilling his special requests. In some ways, he’s like a giant toddler (Although I’m quite thankful that he’s a potty-trained one!) who relies upon me to help him because his poor fine motor skills make some tasks quite difficult for him. Unlike most young men his age, he still needs his mommy. Fortunately, he has learned to ask nicely for my help, which makes waiting on him a more pleasant responsibility.

One of the tasks Alex requests of me involves finding things. Since our house is usually fairly organized, I’m not certain why he has trouble finding his belongings. On the other hand, I sometimes need to find things for his father, as well, so perhaps this is a genetic and/or learned helplessness. I sometimes wonder if both of them enjoy watching me dig through drawers, sort through papers, or crawl under beds looking for lost items. In fact, I suspect that they sometimes deliberately hide things to send me on wild goose chases or to see if I can, indeed, maintain my reputation as the finder of lost things. Nonetheless, I am quite good at finding things, and Alex knows this. Most recently, he has asked me to find his tape measure, his dictionary, and “picture of Little Alex,” a photograph of him taken when he was in preschool that he carries around as a treasure. After I quickly located all of these items for Alex, he went on his merry way, measuring, looking up words, and reminiscing about himself at age four, at least until the next time he misplaced his things and needed my help again.

Another important role I play is that of Alex’s personal chef. While Alex has always had a good appetite for a variety of foods, one of his new favorite pastimes is to sit and think about random foods he’d like me to prepare for him. One of his favorite requests is meatloaf, the only food he likes as much—“one hundred percent”—as his beloved shrimp. To keep within his gluten-free and milk-free diet, I make his meatloaf with gluten-free rice breadcrumbs, a simple substitution for regular breadcrumbs. Unlike Randy, the little brother in the movie A Christmas Story, who hates meatloaf, proclaiming, “Meatloaf, beet loaf, I hate meatloaf!!”,  Alex loves meatloaf and would probably eat it every day if I made if for him that often. This past week, he had another special menu request: cupcakes. Again, his special diet requires a few adjustments so that he can eat the foods he wants. Fortunately, Betty Crocker’s gluten-free yellow cake mix can be made with dairy-free margarine as a tasty treat, especially when iced with Duncan Hines classic vanilla frosting, which is also gluten-free and dairy-free. As a special treat, my mom made these cupcakes for Alex this week, adding maraschino cherries on top as a bonus, and he was delighted.

Aside from Alex’s appetite for food, he also has a hunger for knowledge, and lately he has been including me in his quest for information. Even though Alex is a whiz at using search engines to find information online, he has been asking me to “check out” topics he finds interesting, including such varied topics as bathroom scales, the NFL draft, grass, blue moons, and digital clocks.  I think he enjoys doing this research with me as a shared activity. This also goes along with his recent daily request that Ed or I “visit in Alex’s room.” Instead of wanting to be alone, he likes hanging out with us. Moreover, he likes us to take care of him. Last night, he asked me to take his blood pressure. Although he and I both know his blood pressure is excellent, I think he liked the idea of having me act as his nurse. Similarly, he often asks Ed and me to “tuck you [me—he still reverses his pronouns] back in.” Alex is quite capable of pulling up his own covers in bed, but I think our doing this for him gives him a great sense of comfort, as it does a young child. When we make him feel physically secure by making certain he’s wrapped in his blankets, he seems to feel emotionally secure, as well. The night before last, he awakened me at 12:30 A.M. and 5:30 A.M. to tuck him back in bed. I really think he needed me to reassure him that everything was all right more than he actually needed me to replace the covers. Since he asked nicely, smiled sweetly when I tucked him in, and went right back to sleep, I didn’t mind the interruptions of my sleep. I wish that wrapping a blanket around him and kissing his forehead could solve all of Alex’s problems in life. I’m just thankful that simple actions can bring him comfort and that he knows Ed and I will do everything in our power to make him feel safe and secure.

“And since we know He hears us when we make our requests, we also know that He will give us what we ask for.” I John 5:15

The Joy of Spontaneity

As I have mentioned in previous blog entries, Alex loves clocks and calendars because they help him keep track of time, one of his favorite concepts. In addition, he likes for us to make daily schedules so that he can anticipate what events each day holds for him, especially his favorite activities—eating, going places, and showering. We keep a basic schedule posted on our refrigerator that he consults a few times a day; plus lately he has requested a more specific schedule for each day that I write for him on memo pad paper. These daily lists are never far from his sight as he often carries them around with him or places them next to his alarm clock where he can compare the schedule to the actual time. Somehow knowing what’s ahead for him not only allows him to look forward to favorite activities, but also gives him a sense of calm to reassure him that “there is a time for every activity under heaven.” (Ecclesiastes 3:1)

While this need for routine is common among people with autism, I suspect Alex has also inherited my need for organization. My friends at work have teasingly nicknamed me “Pamodex” because of my organizational skills along with my logical physical and mental filing systems that allow me to find needed information quickly, just as a Rolodex does. [When I consulted the Rolodex website to check the spelling, I ran across a quote that applies to their product and my own life, as well: “Because when you’re organized you can…go live your life.”] Like Alex, I find making lists helps me plan and prepare for upcoming activities, and knowing what I’m doing and where I’m going gives me a sense of peace, too.

Although Alex and I share a need for planning, I’ve found lately that some of our best times are those that occur spontaneously, never appearing on our beloved lists or schedules. Recently, Alex asked to go places, but we really didn’t have anyplace we needed to go, nor had we planned anything. Ed suggested on the spur of the moment that we go to Ogden Gardens, a local park filled with trees and flowers where he often takes beautiful photographs. This particular day had perfect weather—sunny and warm with a nice breeze. As we walked around leisurely, Ed took pictures of the scenery while Alex and I just enjoyed being outside on a beautiful day. At one point, we came across a new addition to the park, a small statue of a turtle, which caught Alex’s attention. For years, one of Alex’s favorite attractions at our county fair was a tortoise that was over one hundred years old. Most children had no interest in the tortoise that barely moved, preferring the more active goats and llamas, but Alex loved that old tortoise. Perhaps seeing the turtle statue in the park reminded him of his old friend because he stooped down to get a closer look and ran his hand across the smooth shell of the turtle statue. Fortunately, Ed was able to capture that earnest action with his camera—an unexpected moment that brought Alex joy.

Last night, I was watching one of my favorite movies, The Secret Life of Bees, when Alex came and sat beside me. Now, Alex rarely enjoys anything that has much of a plot, let alone a “chick flick” like Bees. In fact, I think the only movie he has probably ever watched from start to finish is Shrek. Although I seriously doubt that he had any interest in the movie, he sat with me for nearly two hours, keeping me company. At one point during the movie, he gently patted me on the shoulder and grinned, a sweet gesture that brought tears to my eyes. If I had asked him if he would like to watch the movie with me, he probably would have told me no. That he chose on his own volition to sit with me and share an activity I liked made this spontaneous activity even more special to me. Considering that several months ago, he often acted as though my presence annoyed him, Alex’s willingness to spend time with me, along with his apparent enjoyment of doing something I like more than he does, made this seemingly mundane time one I savored.

This morning, Alex asked me to play gospel music for him. One of his favorite CD’s is Alan Jackson’s Precious Memories, a collection of traditional hymns by Alex’s favorite country singer. The uplifting lyrics of faith and praise, along with the beautiful melodies, make him smile and remind me of my childhood growing up in church singing these hymns. As we listened to the old standards of “In the Garden,” “The Old Rugged Cross,” “What a Friend We Have in Jesus,” and others, Alex and I enjoyed listening to these songs we have heard many times before. Once again, we shared a special time that we hadn’t planned; this time he initiated the activity and allowed me to enjoy it with him.

While the summer was filled with paperwork, appointments, and planning for Alex’s future, the spontaneous joys we have found the past few weeks have reminded me that even though schedules are necessary for the obligations in life, we must be open to the unplanned activities that surprise and delight us. How blessed I am to have a child who teaches me the lessons I need to learn!

“You can make many plans, but the Lord’s purpose will prevail.” Proverbs 19:21