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

Autism, Mutations, and Hot Sauce

Since Alex was diagnosed with autism several years ago, I have followed autism research and reports in the news faithfully. This week, two news stories reported in the media caught my attention, but for different reasons. One story proposed a new possible cause of autism based upon research in Iceland:  older fathers are more likely to produce children with autism. [A link to this news report can be accessed by clicking here.] The researchers noted that DNA mutations occur over time; therefore, older fathers may produce sperm with genetic flaws that can cause autism and schizophrenia. One scientist suggested that the increase in autism rates could be a result of more men having children later in life, thereby passing along their defective genetic material. Since mothers have long been the targets of autism causation, having fathers blamed this round should come as a relief. From Bruno Bettelheim’s ridiculous theory that cold, unfeeling “refrigerator” mothers were to blame for their children with autism having difficulties with social interaction to more recent studies that accuse mothers of children with autism of not taking their prenatal vitamins or wearing nail polish or whatever else these witch hunts can find, we moms apparently got what we deserved when our children were diagnosed with autism. When Alex was born, Ed had recently turned 40; according to the research, he may have had as many as 65 mutations. I guess that takes me off the hook. However, I’m still not buying that genetics primarily determine autism; I believe—as many autism parents do—that environmental factors play a much greater role in autism than many in the medical field want to admit.

While the new report blaming autism fathers made me shake my head in disbelief, another story about a teacher being mean to a child with autism infuriated me. When Alex was in preschool, his teacher decided to keep him restrained in a seat belt chair instead of telling him to sit down because it was “easier.” This led to our decision to home school him, especially since she believed her actions were justified. Stories of teachers bullying children with autism are far too common, and some people simply have no business working with these kids, as evidenced by a news story out of Kissimmee, Florida, this week. [To read this news story, click here.]

Apparently, teacher Lillian Gomez decided that the best way to make her kindergarten student with autism stop eating crayons was to put hot sauce on them. Clearly, she has no concept of sensory issues that children with autism have, such as the need for oral stimulation that leads them to chew on objects. I know this because Alex chewed on his shirt collars, toys, and anything else he could get his hands and teeth on. We solved this problem by providing him with a “chewy,” rubber therapy tubing that he could gnaw on instead of objects to satisfy his need to chew. Not only did Ms. Gomez put hot sauce on this child’s crayons, she clearly premeditated her actions by soaking them for days in the hot sauce. Obviously, this was not a knee-jerk reaction by an overly stressed teacher; she knew what she was doing.

Wisely, her school district fired her last February for her cruel and unprofessional behavior. Since then, she has been trying to get her job back while her lawyer claimed that she was trying to help her student. He is quoted as saying, "I think she made a bad judgment in the way she went about it," he said. "But her purpose was good." Since when is using a painful aversive, such as hot sauce especially on a child who is likely hypersensitive to such a potential sensory overload stimulus, a good thing? Unfortunately, a judge sympathized with this teacher, condoning her bad behavior, and recommended the school district rehire her. Ultimately, the decision to reinstate her lies in the hands of the school board, whom I hope consider how they would feel if she treated their children the same way before they make their decision about allowing her to work with children again, especially children with special needs, who should be protected, instead of punished for behavior they cannot help.

To add insult to injury, a blog entry on The Stir this week also supported the teacher’s actions. [To read this entry, click here.] In her article “Teacher Who Soaked Autistic Boy's Crayons in Hot Sauce Shouldn't Be Fired,” Julie Ryan Evans asserts that the teacher made a bad choice but doesn’t think she should lose her job. Ms. Evans minimizes the effects of the teacher’s actions upon her student, asserting, “Assuming she just soaked the crayons so that the boy would get a little spicy reminder to keep them out of his mouth, however, doesn't outrage me so much. Were they model teaching practices? Certainly not, but as far as I can tell neither were done out of anything but good intentions.” A “little spicy reminder”? “Good intentions”? Give me a break! I wonder how Ms. Evans would feel if a teacher deliberately put hot sauce on her child’s crayons. Perhaps as an autism mom, I’m overly protective; we moms of children who cannot speak for themselves must speak for them. Certainly, working with children with autism requires understanding and patience that few possess. Those who cannot handle the stress should not be working with these children, and I’d be happy to give them a “little spicy reminder” if they need to know what kinds of teaching methods are not helpful. Our kids with autism deserve much better than teachers like Lillian Gomez, and school districts must protect special needs children from those who have no business teaching them.

“The Lord says, "I will rescue those who love me. I will protect those who trust in my name.” Psalm 91:14

Alex's Four S's

As kids around the country head back to school this month to learn the traditional “3 R’s—reading, ‘ritin’, and ‘rithmetic,” Alex has instead been focusing upon 4 S’s. In past blog entries, I have described how he goes through phases where certain topics and activities hold great interest—even to the point of obsession—for him. Sometimes these interests are ones he rediscovers after taking a break from them for several months, even years, which brings us to our first S: Seuss. Lately, Alex has been asking me “to visit” him, which means he likes for me to hang out in his room. Since conversation isn’t one of his strengths, he has decided that the best way for us to visit is for me to read aloud to him, which is reminiscent of when he was little and liked me to read to him. Although Alex taught himself to read by the age of three, which was part of his hyperlexia, or precocious reading skills, he enjoyed having me read to him even though he could read to himself. Part of this nostalgic recent activity has been his choice of reading material—Dr. Seuss. Pulling four of Dr. Seuss’s best books from Alex’s childhood library, he has asked me to read The Foot Book, The Cat in the Hat, Dr. Seuss’s ABC, and my personal favorite, Green Eggs and Ham. While I read the familiar rhymes and funny lines, Alex grins and seems to enjoy revisiting these old stories. I have to admit, I enjoy reading them as much as he likes to hear them, so this is a nice way to spend my “visits” with Alex.

Another current interest for Alex is also a rediscovery: sunrises and sunsets. Since he was little, weather has fascinated Alex, and at one point he told us he wanted to be a meteorologist when he grew up. Also, he has always been interested in time, so the marking of time by sunrises and sunsets naturally interests him. This past week, he has been asking me to check online the times of sunrise and sunset for each day, and he has been looking for patterns as far as how the days grow shorter over time. Yesterday, I reminded him that The Old Farmer’s Almanac, whose new annual editions he receives every year for Christmas because it is one of his favorite reference books, contains a great deal of information about sunrises and sunsets. After I handed him a recent edition of the almanac, he happily began studying when sunrises and sunsets fall on various dates of the year.

Unlike Dr. Seuss and the movement of the sun, which are rediscovered joys for Alex, a new obsession for him is showers. While Alex has always liked taking baths and seems to find them calming, taking showers is a new experience that he looks forward to every day. Because Alex didn’t like getting water in his eyes, we never had him take showers at home, fearing he might get upset if the water sprayed his eyes, and just had him take baths instead. However, when he was in the hospital, his only option for bathing was to take showers. At first, he was quite tentative, as we would have anticipated, putting only a leg and an arm in the shower. With time, he was able to put his entire body in the shower, overcoming his fears and actually enjoying the shower. Now, as soon as he rolls out of bed every morning, he asks us when “shower time” is, even though he knows that we follow a scheduled 7:00 in the evening shower time. Throughout the day, he’ll ask us repeatedly when shower time is or how long it will be until he takes a shower. While it might seem easier to allow him to take his shower earlier in the day, we know that showering seems to be the highlight of his day and prefer that he looks forward to this activity he anticipates so eagerly.

Another new interest for Alex is the red Solo cup, and we can blame country singer Toby Keith for this. [Click here to see Toby Keith singing his popular tune “Red Solo Cup.”] A country music fan, Alex especially likes country songs that are funny, such as Alan Jackson’s “It’s Five O’Clock Somewhere” and Garth Brooks’ “Friends in Low Places,” so Toby Keith’s “Red Solo Cup” fits right into Alex’s taste for clever songs about drinking.  After listening to “Red Solo Cup” dozens of times, Alex decided that he, too, would like to drink out of a red Solo cup. Unfortunately for him, he can’t drink beer, and we don’t have Solo cups of any color. Fortunately for me, I was able to convince him that a red plastic cup we have was a Solo cup and that apple juice would go well in that cup. Whether he was humoring me or really did believe me, he has been enjoying apple juice in his pseudo red Solo cup, which he asks for by name. I suspect that my persuasive powers are not as great, though, as those as the lyrics of the song: “Red Solo cup, you’re more than just plastic. You’re more than amazing; you’re more than fantastic. And believe me, I’m not the least bit sarcastic when I look at you and say, 'Red Solo cup, you’re not just a cup. You’re my friend. Thank you for being my friend.'” If that plastic cup makes him happy, I’m delighted.

Although I’m sure Alex’s somewhat unusual current interests will likely fade, as all phases do, I’m glad that he has found simple things that bring him joy. Until he gets tired of them, I’ll keep reading aloud Dr. Seuss books, looking up sunrise and sunset data for him, reminding him that shower time is 7:00 P.M., and encouraging him to drink his apple juice in the beloved red “Solo” cup.  I just hope that he can always find little things that make him happy—what a blessing that truly is!

“Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises.” James 5:13

Interviewing Alex

Last week, we met with Alex’s behavioral therapist for the first time. As I mentioned in my last blog entry, the state disability funding will pay for a behavioral therapist to work with Alex on not only improving his impulse control but also improving his self-help and life skills. In our first meeting, Alex’s therapist, Melissa, interacted well with him as she asked him a variety of questions while trying to learn more about him. In fact, she must have made a favorable impression upon him because the next morning, Alex asked me, “When is Melissa coming back?” That he looked forward to seeing her again and remembered her name struck me as a positive sign.

To get to know Alex better, Melissa launched into questions that we have answered many times with various people from different agencies during this summer odyssey to obtain disability services for Alex. In my blog entry, “Coming Home,” I described how this interviewing process reminded me of setting up a dating profile for Alex. Now that we have answered questions about Alex’s interests and personality repeatedly, I almost wish I had set up an online dating account so those who want to know more about him could simply pull up his profile.

Because Alex’s verbal skills are weak, Ed and I often find ourselves answering questions for him. He is generally good at answering “Yes/No” types of questions, but if he has to elaborate, he relies upon us to give the essay types of answers. Although we will usually give him a chance to try and respond to questions, we will jump in to help him when he doesn’t seem to have the words to express what he wants to say. After living with him for more than twenty years, we know what kinds of things he likes to do, and we are happy to answer for him. However, I often wonder what other people think when we speak for Alex, especially when they take copious notes during these interview sessions.

To begin getting to know Alex, Melissa asked the typical interview question about what Alex likes to do. Sitting next to Alex, I tapped him on the knee to get his attention and prompt him to respond. When he didn’t say anything, Ed said Alex’s name so that he would know it was his turn to talk and then rephrased the question. Since Alex didn’t respond to either of those cues, I asked him what kinds of television shows he liked to watch. Finally, we had his interest, and he said that he likes game shows. Melissa followed up this question by asking him what his favorites games shows are, and he responded with "The Price Is Right and Wheel of Fortune." Of course, his articulation issues and tendency to talk softly makes him somewhat difficult to understand, so I did what I often do when Alex speaks—I repeated his answer for her to hear.

Throughout the questioning process, we followed our usual procedure of trying to get Alex to focus, helping him understand the questions by rephrasing them, prompting him to answer, followed by repeating his answers or simply answering for him. As Melissa continued asking questions to find out more about Alex, I began wondering what kinds of things she was jotting in her notebook. Paranoia isn’t one of my finer traits, and I often wonder if other people judge Ed and me for the way we have parented Alex from our decision to home school him to our decision to hospitalize him and have him medicated for his extreme anxiety. While we have always striven to do what we felt was best for Alex and believed that our prayerfully considered decisions were guided by God, we know that not everyone would have made the same choices we have.  In my curiosity about Melissa’s impressions, I imagined the things she might have written in her notes.

Parents talk so much the poor kid never gets a word in edgewise.

Parents claim to understand what he’s muttering; wonder if they’re just making up answers for him.

He reminds me of the “low talker” on an old episode of Seinfeld [Watch an excerpt from this episode by clicking here.]—worried that somebody may be agreeing to wear a puffy pirate shirt if we’re not careful.

This would be a pretty good ventriloquist act if the parents’ lips didn’t move so much.

While I doubt any of these ideas were running through Melissa’s head, we always wonder what kind of first impression Alex makes upon people. We hope that given a little time to feel comfortable with her, Alex will charm her with his sweet nature and clever sense of humor. In the meantime, Ed and I will happily continue one of our most important roles as Alex’s parents—his interpreters who help him make sense of language and help others understand that he does have something important to say.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Detour Ahead

“As believers, we will never be permanently disappointed. Somewhere down the road, God will cause it all to work out for our good.” --Joel Osteen

In previous blog entries, I have described our efforts this summer to place Alex in a day program for disabled adults and our enthusiasm about finding a local program we found to be ideal for meeting his needs. In addition, we were delighted that Alex recently qualified for state disability funding that would pay for this program as well as respite care and behavioral therapy. Under the impression that everything was rolling along nicely toward our goals, we were hopeful that Alex would be enrolled in the day program before Ed and I go back to our jobs as teachers in a few weeks. As the old saying goes, “Man plans; God laughs.”

Alex’s state funding went into effect this week on August 1^st, and we assumed that his services would be starting shortly after his caseworker had submitted the budget and had it approved. However, a little over a week ago, we received an apologetic e-mail from the agency that runs the day program telling us that they had concerns about Alex’s behavior, due to his history of aggression prior to his hospitalization.  Originally, they had thought he could be in a group of four with a supervisor, but they decided he might need one-on-one supervision instead. Moreover, they currently don’t have the staffing to give him one-on-one supervision.

Their recommendation was that we have a behavioral therapist complete a comprehensive evaluation to see how much supervision Alex might need in the day program as well as to assess his behavior. We had already chosen an agency whose therapists have extensive experience with autism to work with him for the behavioral therapy component of his state services. In fact, we had met with their primary therapist last month for a behavioral assessment, and we were impressed with her knowledge of autism and her interaction with Alex.

The same day we received the disappointing news that Alex’s admission to the day program would be delayed, we also received a very nice e-mail from the behavioral therapist we had met last month, assuring us that they would be able to provide the comprehensive behavioral evaluation and report the day program had requested. This therapy agency had assigned a behavioral therapist for Alex, and they expressed enthusiasm about working with him. The e-mail explained that this process would take about sixty days, so we figured that this would likely delay Alex’s starting the day program for at least two months.

While the process isn’t going exactly the way we’d planned, Ed and I know that things happen for a reason, and we believe working with the behavioral therapist prior to beginning the day program will be a good experience for Alex. Besides working on negative behaviors, such as his impulse control, where he grabs for things instead of asking first, for example, they will also work on positive behaviors, including life skills and self-help skills. We know he will truly benefit from these lessons that will help him improve his social skills and make him more independent.

In the meantime, we continue to work with Alex so that he complies with requests, follows directions, and answers questions when he is asked. Essentially, the delay of the day program gives us more time to make sure he is ready to learn and cooperate once the time comes for him to participate. We look through our eyes of faith and see that God’s plan is better than ours and know that He is working behind the scenes to make sure the path for Alex is smooth, as all parents want for their children. While initially this delay seemed like a setback, the more we thought about it, the more we realized that it’s actually a setup so that Alex will be ready, and only God knows when that ideal time will arrive. Once again, we realize that one of the most important lessons of parenting a child with autism is learning to wait patiently, yet expectantly, knowing that things will eventually work out in the end.

“In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly.” Psalm 5:3

Is There a Doctor in the House?

This week was the first week this summer that we didn’t have any appointments scheduled and that I didn’t have any phone calls to make. Of course, these unplanned times sometimes allow unexpected surprises to arise. As I described in a previous blog entry, “An 'Aha!' Moment,” Alex was diagnosed with a yeast infection in and around his mouth about a month ago. We’ve been treating the infection with a once-a-week dose of the anti-fungal drug Diflucan along with an anti-fungal ointment on his face. He finished the fourth and last dose last Saturday and seemed to be doing better. However, on Wednesday morning, he awoke with his tongue coated in thick yeasty substance.

Since he would be due another dose on Saturday, and we were out of the prescription, I decided to call his doctor and make an appointment for him to see if he needed more anti-fungal medicine. I thought we were fortunate to be able to see the doctor early that afternoon, but I didn’t have any idea that our plans would suddenly change.

When we arrived at our family doctor’s office, the receptionist asked for our insurance card, which I gave her. I also gave her Alex’s Medicaid card that had arrived in the mail last week with instructions to present it any time he was going for medical appointments. She told me that she didn’t think they took Medicaid, but she would check. I explained that he was still covered under our health insurance policy (since Medicaid had recommended that we keep him on our policy), and we would pay any expenses the insurance would not, as we always had in the past.

When she went to ask another receptionist about Medicaid, I heard the other one indignantly ranting how Medicaid never paid for anything, so they never took Medicaid patients. She then told me rather rudely that they would not see Alex because he has Medicaid. I explained that Alex had recently been approved for Medicaid because he was disabled, and I assured her that we still had private insurance for him, plus we would pay ourselves for what expenses were not covered.  In response, she condescendingly informed me that the doctor could not legally see Alex since he has Medicaid now; we would have to find another doctor. Annoyed by her attitude and relieved that Alex wasn’t very sick, I told Ed and Alex, who were sitting in the waiting room unaware of what was transpiring at the reception desk, that we were leaving, and I would explain why once we were in the car. Medicaid apparently necessitated needing to find a new doctor for Alex; and the receptionist’s nasty attitude made me decide that I would find a new doctor for myself, as well.

Because I wanted a doctor to check Alex’s mouth, we decided to take him to St. Anthony’s Express Care here in town, which is affiliated with the hospital where Alex stayed in Michigan City, as well as the ER in Chesterton where we took him last month when the infection erupted. Fortunately, they do take Medicaid patients and were willing to see him that afternoon. All of their staff were very kind to us, and the doctor was sympathetic about our experience about basically being dumped by our family doctor. After examining Alex, she thought his mouth was healing, but she gave us two more doses of Diflucan in case he needed them. In addition, she suggested the names of three family doctors she thought would take Alex as a patient now that he has Medicaid. Grateful for her help, we headed home with the prescription and information she provided.

That evening, I began researching Indiana Medicaid providers online and found the doctors the urgent care doctor had recommended along with the names of family physicians in two groups here in town who have a good reputation. Jotting down names and phone numbers, I planned to make phone calls the next morning to see if they were taking new patients and would accept Alex. The first group I called was not currently taking new patients, and they would not accept new patients with Medicaid. The second group was taking new patients, but they also would not accept new patients with Medicaid. The third group had two doctors accepting new patients, but they could only take new patients with Medicaid if Medicaid assigned the patients to their office. Frustrated with the lack of progress I was making, I decided to call Medicaid for assistance.

First, I called the phone number on the back of Alex’s Medicaid card, and while the woman was very nice, she recommended that I check the website, which I had already done. She then suggested that I call our local office who may be able to help more directly than her state office in Indianapolis. When I called the local office, the woman with whom I spoke was also very pleasant and apologetic that I was having trouble finding a doctor for Alex. She recommended that I call another Medicaid office in Indianapolis that coordinates services and providers. When I called that office, the man took all of the pertinent information about Alex regarding our address, phone number, file number, Alex’s birthdate and Social Security number. He then told me that he would have to speak with Alex since he is legally an adult. I explained that Alex’s autism is his disability that qualified him for Medicaid and that he doesn’t communicate well. I also explained that besides being his mother, I have medical power of attorney for him and that Medicaid has designated me as his authorized representative. Very politely, he said, “Mrs. Byrne, I believe everything you’re telling me, but because of HIPAA [health care privacy] laws, I cannot discuss your son’s case without his permission or the legal documents showing that you are his medical power of attorney.” He then gave me the information as to where I need to send a copy of Alex’s medical power of attorney papers so that he can talk to me instead of Alex.

While I certainly understand an individual’s right to privacy regarding health matters, the extent to which this law is enforced strikes me as ridiculous, especially when it comes to a parent seeking help for a disabled adult child who cannot advocate for himself/herself. Nonetheless, I will fax yet another copy of Alex’s medical power of attorney papers in hopes that we can find a doctor for him. Fortunately, Alex is rarely sick, so he doesn’t need a doctor often. His nurse practitioner’s office accepts Medicaid, so she can continue to oversee the medications that control his anxiety and agitation. Until we find a doctor for him, we’ll just plan to take him to St. Anthony’s Express Care here in town or their ER in Chesterton because we know they will treat him, and we have been extremely pleased with the care they provide. I’m sure God will provide a good doctor for Alex, but once again, we will need to be patient until He reveals his plans.

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that He has promised.” Hebrews 10:36

Winning the Prize

Years ago, I used to fill out entries for the Publishers Clearing House contests, hoping that some day, the Prize Patrol van would pull into our driveway, bringing roses, balloons, and best of all—a giant check showing that we had won the large cash giveaway. This week, we had something nearly as exciting happen as we found out that Alex qualified for state disability funding that will pay for a number of services for him. First, we were notified that he qualifies for Medicaid, which will help pay for his medical expenses. Then, we received a call that he qualified for the Indiana Medicaid developmental disability waiver, which will pay for various services to help him become more independent. Although the supervisor who came to our home this week to discuss his services budget didn’t bring roses and balloons, the file folder indicating how much money Alex would receive was essentially the equivalent of the giant check often featured in the Publishers Clearing House commercials. Needless to say, we were thrilled.

Waiting for disability funding is a notoriously slow ordeal in Indiana. Many parents wait several years before their children receive money for programs and assistance they desperately need. When we started applying for funding about three months ago while Alex was hospitalized, an official from the state agency initially told us that we would likely have to wait two or three years to receive services. With the help of Alex’s caseworker at the hospital, we were able to move things along more quickly. Since she knew how the process worked, she guided me through the arduous paperwork, expedited forms by faxing them for us, made phone calls pleading our case, and scheduled necessary medical work while Alex was in the hospital by arranging a psychological evaluation, a physical exam, a TB test, and a chest x-ray. Having her as our advocate was truly a blessing because I know she moved things along much more rapidly than we could have done on our own. While she was taking care of these details, I was busily filling out required forms and submitting documents, which made my organizational skills come in handy. At one point, I asked Ed what people who weren’t organized do in situations like this, and he responded, “They marry people like you.”

Once all of the paperwork had been sent to the state agencies, we were told that although “there is no timeline,” we would probably have to wait at least four or five months. In the meantime, I decided to investigate various agencies that provide services for adults with autism in our county and adjacent counties. Between Internet research and several phone calls, I had a better idea of what kinds of services each provider offered. Also, Ed, Alex, and I toured three facilities to see first-hand what programs might best suit Alex’s needs. As I mentioned in a previous blog entry, all three of us were especially impressed with Lakeside, a local facility that operates a curriculum-based program for adults with disabilities, very much like a school where Alex could continue to develop skills and learn. Once we made this decision, we have been working with an intake coordinator to begin the process of considering Alex for enrollment.

One of the prerequisites for Alex’s enrollment in the school program was to have a behavioral assessment. After more Internet research and making several phone calls, I found two therapists who could evaluate him. Some therapists indicated that they don’t have experience with autism, and those with autism experience have so many clients that they have waiting lists for new patients. As I explained in my last blog entry, our first behavioral assessment essentially was a waste of time because the psychologist wanted to run many more tests than we felt were needed. However, we were able to find another therapist with extensive autism experience who was able to see Alex within a week. We were very impressed with her warm interaction with Alex and her understanding of autism. After our hour-long session in which she asked all three of us questions to gain more insight into Alex’s behavior, she told us that she felt confident that she could write a behavioral assessment based upon that single session. Moreover, she indicated that she could write the report we needed within a week. In addition, she explained that once Alex received state funding, he would be eligible for behavioral therapy through her office in which therapists could come to our home and work on not only curbing negative behaviors, such as his impulse control issues, but also work on helping him develop positive behaviors, such as self-help skills.

When the supervisor from the state-appointed agency that helps clients who receive the developmental disability waiver came to our house this week, she explained that based upon all the information we had provided, Alex qualified for several services. First, they will pay for a day program for him, such as the Lakeside program. They will also fund transportation for the day program; a van can take him from our house to and from the day program so that we don’t have to drive him ourselves. In addition, they will provide respite care as needed, so that a qualified caregiver can come to our home and watch him, allowing both Ed and me to leave the house and know that he’s in good hands. Another service offered is the behavioral therapy we had learned about during his behavioral assessment, and we requested that the therapy group where he had his assessment done provide this service since we feel confident they will work with Alex well.

While we would ultimately like Alex placed in a good group home, we discovered from the agency supervisor that Indiana is moving away from this concept in favor of supported living. A more likely scenario for Alex, she explained, would be that he would live in an apartment with two roommates who also have disabilities, and they would have caretakers provided round the clock to help meet their needs yet working to make them more independent. Since I hadn’t considered supported living as a possibility for Alex, this concept seemed a bit shocking to me at first. However, the supervisor explained that this program offered more freedom, as Alex could move from one apartment placement to another if needed more easily than from a group home. In addition, finding an apartment here in town would be easier than finding a local group home placement. Again, we plan to work with our local disability service provider to see what they can find regarding supported living placement and will pray that when a good arrangement comes up for Alex, we will know this is the right time for him to move. Until then, we are thankful that the process of getting him state aid proceded much more rapidly than usual and that our local disability agency offers outstanding programs that can meet his needs. Once again, we wait patiently for the next step God has planned for us, and pray that all three of us will adjust well to the changes, knowing that He has arranged everything in advance ultimately for our good.

“Let all that I am praise the Lord; may I never forget all the good things He does for me.” Psalm 103:2

Making Progress

While we’ve spent most of the week under a terrible heat wave, we have made good progress with Alex. Last weekend, a doctor diagnosed him with a yeast infection of the skin and gave us oral and topical antifungals to treat the condition. Knowing Alex’s past history with yeast infections, however, we suspected that he likely had the yeast overgrowth internally, as well. After his initial dose of Diflucan, we began seeing curd-like substances in his mouth and nose, a sure sign that yeast had invaded his digestive system and perhaps other organs, too.  In the wee hours of Monday morning, we heard him coughing and discovered that he was coughing up more of the curdy yeast, a necessary step to his healing. On the bright side, the yeast rash on his face responded well to the topical cream and began to disappear. Fortunately, the doctor had told us that his condition is not contagious, so we didn’t have to worry about his spreading it to other people.

On Monday, we went again to visit the day program where we want to enroll Alex and met with our intake coordinator and the facility director. When we arrived, all of the staff and clients were outside, despite the intense early afternoon heat. Our intake coordinator immediately came to tell us that the smoke detectors had gone off, forcing everyone to evacuate the building until they could establish that no fire risk existed.  Once the source of the smoke that set off the alarm—an art project that involved melting crayons with a hair dryer—was established, everyone was allowed back into the building. Guided by the school’s friendly director, Alex toured the building for the second time, trying out Wii bowling, scanning through a set of encyclopedias that caught his attention, and checking out the touch screen computers he found intriguing. Seeing him engaged in the various activities and comfortable in that setting makes us hopeful that he will be able to participate in the day program soon.

On Tuesday, we took him to a psychologist to begin behavioral assessment as part of his enrollment for the day program. Prior to our appointment, I had completed nine pages of forms regarding Alex’s health and development, going back to the womb. Although we explained that we were convinced Alex’s diagnosis of autism was correct, the psychologist had me complete an autism rating scale as well as one for attention deficit disorder. As I was completing those forms, Ed had to ask Alex 370 questions for a personality inventory. While Alex was patient and compliant to answer all of these true/false questions, we suspect that he didn’t understand what some of the questions were asking, such as “Is your sex life fulfilling?” or “Do you get embarrassed when someone tells a dirty joke?” The inventory also asked, “Do you love your mother?” and “Is your mother a good woman?” Since he answered both of these questions in the affirmative, I’m hoping that he did understand those questions and was being truthful. After we completed the assigned tasks, the psychologist wanted us to come back on Friday for more assessments.

Since Wednesday was the Fourth of July holiday, we had no appointments scheduled and just enjoyed a quiet day at home relaxing.  Even though people in our neighborhood were setting off loud fireworks throughout the day, Alex seemed unfazed by the noise and never became agitated. In fact, we had noticed that every day since he took the Diflucan on Saturday, his behavior seemed to be improving as he became calmer, more pleasant, more alert, and better natured. A quick review of my books and some online research showed that yeast overgrowth can cause behavioral issues in autism, including agitation and aggression. As Alex’s physical symptoms improved this week, his behavior improved, too, giving us hope that addressing his yeast overgrowth could help him return to his calm and pleasant self.

On Thursday, we had an appointment with the nurse practitioner who oversaw his medication while he was hospitalized in the Behavioral Medicine Department. After we gave her a quick update on his status, she decided to keep him on the same medication regimen but told us that we could decrease some of his sedatives by halving the doses or eliminating them if he seemed calm enough not to need them. She indicated that she wanted to see him again in three months, and she gave us lab orders to be run in six months to check his various levels. In addition, she agreed with my decision to add a multivitamin and probiotics to his medicines as a way to address his yeast overgrowth issues, and she wrote a prescription for two more rounds of Diflucan. After our appointment, I felt thankful that she is handling Alex’s case because of her expertise with autism and her personality that makes working with her very easy and comfortable.

On Friday, we returned to the psychologist’s office, where Alex was to work with one of the staff on a battery of tests, but the psychologist was not there. After one set of tests, the evaluator told us that she wanted to use a different test with Alex, but she didn’t have it there and would have to reschedule in a couple of weeks because she would be out of town the following week. I told her that we needed to have testing completed before Alex could be considered for the day program and asked her to have the psychologist call me. Once we were home, I contacted another office whose counselors have experience with autism and scheduled a behavioral assessment for this upcoming week. When the psychologist called, I explained that while I appreciated all the tests she was willing to run with Alex, we did not need I.Q. testing for him, simply a behavioral assessment. She didn’t seem to agree with me, and she referred me to another psychologist with more experience in autism; however, I know from other parents that agency has a waiting list and is not taking new clients. After thanking the psychologist for her time, I was glad that we were able to find another place to have Alex tested and hopeful that they would know how to assess him.

Although the changes in plans for Friday seemed like a setback, they were actually a blessing because Alex had a die-off reaction later that morning. Often, about seven days after beginning yeast treatment, a person will experience a yeast die-off, which is characterized by vomiting and extreme fatigue. After vomiting twice, Alex spent most of Friday sleeping as his body was coping with the die-off reaction. Even though he probably didn’t feel well, he was very sweet and pleasant and didn’t become upset by his physical symptoms. In fact, every day this week, we saw improvements in his behavior, which we are hopeful is a sign that healing in taking place in every part of his body. Yesterday, he had a minor episode of setback in behavior, but he willingly went to his time out spot and complied in serving his time without complaint. Moreover, as soon as he got there and I explained why he had to have a time out, he immediately apologized, which was surprising and gratifying. He took his second dose of Diflucan yesterday, and we pray that as it heals his body, he will continue to improve his behavior so that we can have our consistently sweet and obedient son again. Seeing several glimpses of the real Alex throughout the week has encouraged us that we are making progress toward that goal, and that God is fulfilling the promise of hope and healing.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9