Temporary Bump

Alex will turn 21 in less than a month, and one would think after that much time, I’d pretty much have most things figured out in this task called mothering. However, from time to time, I find myself temporarily baffled, engaged in an internal conflict as to what is the best thing to do. In these situations, Ed usually defers to my judgment, which sometimes adds to my anxiety, wondering if he really agrees with my decision or if he just thinks he shouldn’t question my maternal instincts. Anyway, one of those moments arose yesterday.

As I have written in previous blog entries, since June, Alex has been dealing with yeast infections in and around his mouth, and we have relied upon six different doctors or nurse practitioners to have him assessed and treated.  Three of the times, he became symptomatic on weekends, which meant taking him to a clinic open when doctors’ offices are not. Once we took him to urgent care when his regular doctor would not see him since he is now on Medicaid for his autism, and twice he has seen nurse practitioners at his new family doctor’s office. A couple of times, I have called the nurse practitioner who oversees his psychiatric medications on Friday afternoons to get prescriptions over the phone so that we would not have to take him to the off hours clinics. While all of these health care practitioners—all women, I might add—have been very sympathetic, compassionate, and helpful, I wish we had one consistent doctor or nurse practitioner who has seen him every time for consistency. Nonetheless, all have agreed upon the same medication for treatment, which is reassuring. This last round of the antifungal medicine, Diflucan, has spanned a month of daily doses, which Alex will finish on Monday.

A couple of days ago, I was thinking about this month of daily antifungals ending, hoping and praying that the medication had finally kicked out the yeast that has been invading Alex’s mouth. Ready for him to be healthy after all this time, I was encouraged that his mouth does look better. Then, this week I came down with a cold that was thankfully mild, which I attribute to taking Vitamin D drops. Even though my cold wasn’t that bad, I prayed that Ed and Alex wouldn’t catch the cold from me, and I faithfully washed my hands to try and keep the germs to a minimum. All week long, I have watched Alex for signs that—despite my best efforts—he has caught the cold, too. Fortunately, both Ed and Alex seem to have escaped getting the cold I’ve had.

With my cold gone, my guys remaining healthy, and the end of Alex’s yeast treatment hopefully in sight, I thought maybe things were finally on the right track health-wise. We were getting ready for a trip to Target, one of Alex’s favorite stores, to pick up a few things when I offered to help Alex comb his hair. Since he’s nine inches taller than me, the only way I can comb his hair properly is to have him sit while I stand over him. As I began combing his hair, which I had cut fairly short last weekend, I noticed a red splotch in his scalp that had not been there the previous day. Looking more closely and moving aside his hair, I saw that the red splotch was not just inflamed skin on his scalp but oozing fluid. This fiery red weeping sore was about an inch in diameter on the crown of his head. Having never seen anything like it, frankly, it scared me.

Not wanting to send Alex into panic mode, I knew better than to let him see my fears or let him know how bad the spot on his head looked. I told him he had some sticky stuff in his hair that I wanted to wipe with a washcloth, and he was agreeable. As I dabbed the sore spot, he never flinched or complained, which was a good sign. I asked him if his head hurt, and he said no, another positive. When Ed came to see why we were taking so long to get ready, I motioned him over and pointed to the sore on Alex’s head, and I suspect the facial reaction of shock he had was the same I had when I saw it for the first time. He mouthed, “What is it?”  In response, I shrugged my shoulders. However, I suspected an infection, so trying not to alarm Alex, I suggested we take his temperature, which was only slightly above normal. Nonetheless, my mother’s instinct that didn’t quite know what the cause of this sore was made me think that we needed to have it checked, so we headed for the CVS Minute Clinic here in town, where we had been pleased to get Alex such good care several weeks ago when his yeast infection flared on a Saturday afternoon.

Grabbing Alex’s medical file that contains his list of medications, our legal papers granting Ed and I authority to make medical decisions for him, and a copy of his Social Security card, I followed Alex and Ed out the door to the local CVS Minute Clinic. On the way there, questioning my decision, I asked Ed if I was overreacting to have Alex checked, but he confirmed my decision by telling me he agreed with me that we needed to have him examined. Fortunately, we didn’t have to wait at all, and the nurse practitioner was very sweet and kind to Alex and us.  After taking his temperature, pulse oxygen, and blood pressure, which were in the normal range, and listening to his heart and lungs, which sounded fine, she took a closer look at the sore on his head, which she diagnosed as folliculitis, an infected hair follicle apparently common in teenage boys and young men. She said her own sons had even had the same thing, which was comforting, especially since she commented that it looks worse than it really is. To assess whether the infection had spread, she carefully checked the lymph nodes in his neck and head, all of which were fine. To treat this infection, she gave us a ten-day run of antibiotics twice a day, and she recommended that we put antibiotic cream on his head to help heal it. The only concern we had about the antibiotics is that they can cause yeast overgrowth, which we’ve been fighting for months. She said that since he’s been on antifungals, he should be fine. Nonetheless, I will double his dose of probiotics to keep his digestive tract in good order while he’s on the antibiotics and hopefully keep the yeast from repopulating his mouth again.

Satisfied that Alex’s newest ailment had been quickly, properly, and accurately diagnosed, Ed and I were content that we had a plan to treat the infection on Alex’s scalp. In the words of Saturday Night Live character Roseanne Roseannadanna, though, “It’s always something! If it’s not one thing; it’s another.” Last night as Alex was getting ready for bed, I noticed a small spot on his shoulder, and upon taking a closer look, I saw that it’s some type of fluid-filled blister. A closer inspection revealed a similar tiny blister just below his ear. Of course, that sent me to the Internet to see what these strange blisters could be. With no definitive diagnosis, I’m hoping that the antibiotic will take care of them, as well.  If not, we’ll be headed back to the doctor yet again. In the meantime, I thank God for the compassionate doctors and nurse practitioners who have been taking care of Alex and for God’s healing that surpasses anything humans can do. As we wait, I’ll keep a close eye on that sore and those blisters, praying that they disappear quickly and making sure that I do all Alex needs for me to do as his mother and caretaker.

“For our present troubles are small and won't last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!” II Corinthians 4:17

Forgoing Flu Shots

 

This fall, the urgency to get a flu shot seems greater than any other year in recent memory. Television and magazine ads stress not only how the shots protect against illness, but also how a new version offers a smaller needle, personified by a talking hedgehog who gets a haircut to show just how small that needle is. Besides doctors’ offices and health care facilities, pharmacies, discount stores, and grocery stores offer convenient opportunities for patients/shoppers to get vaccinated. Nearly every time I use the automated phone service to refill our prescriptions, I must listen to the pharmacy’s ad recommending that people get a flu shot now, followed by the times these shots are available at their stores.  

In dealing with Alex’s persistent case of thrush and cheilitis, or yeast overgrowth in and around his mouth, we have taken him to five different doctors or nurse practitioners in the past few months. In addition, he has had blood tests three times. Almost every time we have taken him for medical treatment or testing, we have been asked if he has had a flu shot this season. When we have said no, the health care provider has asked us if we would like for her to give him a shot, and every time we have said no. I then quickly and vaguely explain that he doesn’t do well with the preservative in flu shots, which usually ends the discussion. At his family doctor, I had to sign a form that we refused the flu shot and provide a reason in writing. Despite my desire to teach the staff with a more detailed explanation as to why flu shots are not a good idea for Alex, I simply wrote that he has adverse reactions to preservatives found in flu shots.

When I was younger, I was a proponent of flu shots. As a middle school teacher, I’m constantly exposed to various illnesses from my contact with students who may come to school ill or carrying germs prior to showing symptoms of illness. In addition, my internist recommended that I receive a flu shot annually because of the effect viruses can have on my chronic autoimmune condition, idiopathic thrombocytopenia. Basically, a virus can send my immune system into overdrive, causing my spleen to destroy healthy blood platelets, which are necessary for blood clotting. Since I already tend to have a low platelet count, the effects of a virus can potentially put me at risk for bleeding. Following my doctor’s advice, I would annually get vaccinated against flu. However, in those days, flu shots were not available on every corner, and I would constantly search the local newspaper every fall to see when and where flu shots would be given. One year, a limited supply of the vaccine allowed only the elderly and chronically ill to be eligible for flu vaccines, which meant that as a relatively healthy young adult, I didn’t qualify to receive a flu shot. Perhaps coincidentally or through blessings from God, that year I never became sick at all—no flu, no cold, nothing. In some years when I had gotten the flu shot, I still came down with flu, a possibility always mentioned when flu shots are given. After the year I stayed healthy despite not having a flu shot, I decided that I wouldn’t get flu shots any more, and I believe that I am healthier each winter than I was the years I received flu shots. For me, I suspect that not tampering with my body’s overly sensitive immune response enables my antibodies to react more appropriately when a virus or flu activates them.

For Alex, I have a different reason for refusing flu shots for him. When he was eleven years old, I asked his doctor if we could have him tested for heavy metals after I had read that many children with autism carry toxic loads of various heavy metals because their bodies have difficulty removing them in the detoxification process. Although she didn’t think he probably had heavy metal poisoning, she understood my concerns and agreed to run a heavy metals urine challenge test, which required that I collect his urine over several hours. When the results came back, she and we were surprised to discover that Alex had toxic levels of arsenic, lead, mercury, and aluminum. In fact, his arsenic levels were the highest she had ever seen. To remove the heavy metals, Alex had to go through chelation therapy by taking DMSA pills, a sulfur-based compound that binds with the heavy metals and removes them from the body through the urinary and digestive tracts. This process took over two years before testing showed that his heavy metals levels were in the normal range. While we don’t know the original sources of all the toxins, we suspect that thimerosal, a mercury-based preservative used in vaccinations, likely contributed to his mercury poisoning.

Even though most people in the medical community argue that thimerosal has no connection to autism, this mercury-based preservative was removed in 2001 from most vaccines children receive. However, many flu vaccines still contain thimerosal unless they are single-dose vials or syringes since thimerosal is supposed to protect multi-dose vials from contamination by bacterial or fungal growth. [I confirmed this information on the Centers for Disease Control and Prevention’s website. To go to their website on flu vaccine safety, click here.] One year when a particularly virulent strain of flu was infecting children, I asked Alex’s doctor if he should get a flu shot to protect him. She was adamant that he not receive the vaccine because of the effects of the thimerosal on him. In addition, she did not want him to have the nasal version that does not contain thimerosal because she felt the live vaccine it contains was not good for him, either. Instead, she assured me that prevention, such as washing hands and making sure he had proper nutrition and plenty of rest, would likely prevent his getting flu in the first place. If he did get the flu, she would treat him with antivirals and boost his immune system so that his body could fight the virus without the vaccine. I trusted her judgment, and Alex stayed healthy that year. Since then, I have never even considered having Alex get a flu shot, remembering her medical advice and praying God would keep him well. Thankfully, this approach has worked well, and Alex rarely gets sick. Moreover, we have limited his exposure to mercury, a known neurotoxin, which his nervous system certainly does not need.

Despite the CDC’s dire warnings of the dangers of flu, stating, “Influenza is a serious disease that can lead to hospitalization and sometimes even death,” we will not be getting flu shots this year. Even the CDC admits that the vaccine’s effectiveness depends on many factors: “How well the flu vaccine works (or its ability to prevent influenza illness) can range widely from season to season and also can vary depending on who is being vaccinated.” Certainly, I respect the decision of others to get vaccinated against the flu, but with no guarantees that that shot actually prevents flu and with the added potential dangers of thimerosal, I’m not willing to take that risk for Alex or myself. In the meantime, we follow the best advice my internist ever gave me for good health: “Plenty of rest, proper nutrition, and lots of prayer.” This sounds like a good plan to me.

“Lord, your discipline is good, for it leads to life and health. You restore my health and allow me to live!” Isaiah 38:16

Eleven Random Things

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

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

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

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

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

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

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

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

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

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

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

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

While We Wait

 

Recently, Alex has developed some new routines, and we’re still battling with an old foe. Since all of these begin with the letter t, I thought I’d lump them together this week. The new routines involve Times Square, the Target Café, and therapy, while the old foe is the summer plague of thrush.

As I have mentioned in previous blog entries, Alex loves to watch videos on You Tube. Although he mostly watches country music videos, he also likes to watch clips from television game shows. The past couple of weeks, he has wanted to watch videos from various years of Dick Clark’s Rockin’ New Year’s Eve where they count down the seconds until the new year as the ball drops in New York’s Times Square. Considering Alex’s love of time, calendars, and holidays, I suppose his fascination with watching this annual celebration makes complete sense. In addition, the narrator of these videos also tells what the temperature in Times Square is on that particular New Year’s Eve, which is an added bonus for Alex, who loves weather.  Even though he has watched some of these videos several times, he gets just as excited watching the seconds wind down and the ball drop as the crowds in the videos do when it happened in real time. Moreover, even though Alex and I like Ryan Seacrest as a host, we’ve found by watching these old videos that no one rings in New Year’s Day like the late great Dick Clark.

Along with watching the countdown of the final minutes of each year, Alex has also discovered that he really likes the Target Café. Lately, about once a week, he and I have gone shopping at our local Target store with my mom. Since Alex just likes going places, he doesn’t seem to mind browsing through the store with his mother and grandmother. As a reward for his patience and good behavior, my mom treats him to a Sierra Mist soft drink and a bag of Lay’s potato chips from the Target Café at the end of our shopping trip. Besides enjoying his snack, Alex seems to like sitting in the café and watching people go by. Last week, Ed and I took him to Target, and as we were nearing the end of our shopping, Alex started chanting something softly. Ed couldn’t figure out what Alex was talking about, but I knew what he was saying that he wanted—“Target Café, Target Café, Target Café.” Hence, Ed was introduced to the ritual of stopping at the Target Café at the end of a shopping trip.

The third new routine is therapy--behavioral therapy, to be more precise. We have done a variety of therapies with Alex over the years, including speech therapy, occupational therapy, sensory integration therapy, Floortime therapy, cranial therapy, visual therapy, music therapy, nutritional therapy, and chelation therapy. However, behavioral therapy is new for us because until about a year ago Alex’s behavior was mostly quite good. This summer, we began searching for behavioral therapists with experience in autism, and we were fortunate to find an agency in a nearby town that handles people with autism and that had openings for new clients. Finding a therapist with autism experience is tricky enough, and those who do have autism training often have so many clients they cannot take on any more. One of the blessings of Alex qualifying for state funding this summer was that behavioral therapy is covered by his Medicaid waiver services. Not only are we fortunate to have found a behavioral therapist who works well with Alex, but also the state pays for this valuable therapy.

When we started behavioral therapy in August, most of the work was spent assessing Alex’s behavioral issues. His therapist and her supervisor who also observed Alex and interviewed Ed and me felt that many of his actions were attention-seeking behaviors. For example, if Alex wanted our attention, he found it easier to grab our arm than to tell us what he wanted. After several weeks of observation and gathering data, his behavioral therapist developed a behavior plan. Now that the plan has been written, she has been able to focus on working with Alex one-on-one on a weekly basis at our home. Alex eagerly anticipates the sessions with his sweet and enthusiastic therapist Melissa, who also seems to get a kick out of working with him. While she develops social stories, plays games, and talks with Alex, I sit in another room and try to eavesdrop on their conversations. Apparently, Alex is funny during their time together because I frequently hear Melissa laugh in amusement at his comments. She seems to bring out the best in him because he has been remarkably cooperative and well behaved throughout their sessions. I suspect Alex is happy to have someone other than his parents and grandparents to spend time with him. We’re pleased that Melissa is helping Alex develop his social skills and that he enjoys working with her so much.

While the new routines have been welcome, the hanging on of the annoying fungal infection thrush has been frustrating. Alex was first diagnosed with a yeast infection in and around his mouth in June, and we’ve been trying to clear up the thrush and cheilitis ever since then with anti-fungal medication. After weekly doses of the antifungal drug Diflucan didn’t seem to be clearing up the infection completely, his family nurse practitioner put him on daily doses for two weeks. Although he seemed better, a few weeks later, the symptoms flared up again. Last Saturday, we took him to our local CVS Pharmacy’s Minute Clinic, where a very sweet and sympathetic nurse practitioner confirmed my mother’s instinct that he again had thrush and cheilitis. She gave him two more doses of Diflucan and recommended we take him back to our family nurse practitioner.

On Tuesday, we had an appointment with another family nurse practitioner, who understood our frustration with trying to get rid of the yeast overgrowth and concerns that for Alex’s well being. She decided to do a culture by swabbing his mouth, gave us orders to have a blood test done to see if, indeed, his candidiasis, or yeast infection, is systemic, and prescribed a month of daily doses of Diflucan. We were pleased that she took such an aggressive approach, which is what we wanted. Although we’re curious as to what the test results will show, we’re pleased that Alex seems to be responding well to the medication as his symptoms are improving. We pray that this run of Diflucan will rid his body of the yeast overgrowth that irritates his mouth and throat, making him irritable. Moreover, we believe that once the yeast overgrowth abates, we will see great improvement in Alex overall. Once again, God gives us patience as we wait for Him to do the true healing, but like the eager crowds in Times Square on New Year’s Eve, we can’t help but count down: “Five, four, three, two, one.”

“For I am waiting for you, O LORD. You must answer for me, O Lord my God.” Psalm 38:15

Visiting

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

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

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

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

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

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

Woman's Day Magazine

As my friends and family know, I have found great inspiration, spiritual strength, and deepened faith from Pastor Joel Osteen’s weekly-televised sermons as well as his best-selling books. At the end of every sermon, he offers a prayer in which he says, “Keep God first place in your life. He’s going to take you places you’ve never dreamed of.” While I’m not certain that I always keep God first place because Alex seems to demand that position in my life most days, I try to honor God in all that I do. I’ve always wondered what those places I’ve “never dreamed of” might be until this week when a feature article about my family entitled “Caring for Alex” appeared in the November 2012 issue of Woman’s Day magazine. Although I’ve known for a few months that this article was being published, seeing the story of my family and our pictures in print is still amazing to me—one of those places I “never dreamed of.”

In July, I was reading through comments people had made on my blog site and noticed one from Marjorie Ingall, who told me that she was writing an article for Woman’s Day about raising an adult child with autism and asked me if I’d be willing for her to interview me. Knowing that I tend to be a bit gullible [Ed is now laughing as he’s reading this because he thinks I’m very gullible. He’s actually right, but I prefer to think of myself as trusting instead of gullible.], I reined in my initial excitement and Googled Marjorie to make sure she was a legitimate writer. [Now Marjorie is laughing if she’s reading this because I never told her I’d investigated her background.] Once I discovered Marjorie’s impressive credentials as a published writer, I e-mailed her and told her I would be happy to talk with her about our experiences.

In our various conversations by phone and e-mail that felt more like old friends chatting than a writer interviewing a subject for research, Marjorie put me at ease in talking candidly about raising a child with autism. Since she had already read all of my blog posts on One Autism Mom’s Notes, she had a good sense of Alex and our family dynamics and how autism affects our lives. Her warm and sympathetic nature made me trust that she would describe us accurately as parents just trying to do what’s best for our special needs child. Keeping the mood relaxed, Marjorie and I spent a good deal of our phone conversations laughing because we share similar senses of humor, and Alex—my favorite topic of discussion—is a funny guy, as he’s proudly told us himself.

While Marjorie was putting together the written part of the article, Woman’s Day Photo Editor Roni Martin contacted me requesting photographs of Alex and our family to accompany the article. As I went through various digital pictures we had of Alex, I realized that we had very few recent photos in which he was not wearing sunglasses. Because his eyes are sensitive to light, he rarely goes outside without his sunglasses, and most of the pictures we had of him were taken outdoors. Nonetheless, I found some pictures and sent them to her. Then, she suggested that they send a photo crew to take new pictures of our family, explaining that the process would take about four to six hours. Knowing that Alex would not be patient for that long, I proposed instead that we take the pictures ourselves and see if they would be acceptable. Understanding of our situation, she agreed to our request and sent suggestions for what we should wear and how the photos could be staged. Since the article would be published in the fall, she recommended that we not wear summer clothes, even though we were taking the pictures in 90-degree weather. She also suggested that our clothes be solid-colored with no patterns, which made me realize that Alex did not own a single shirt without some sort of striped pattern, so we bought him a couple of solid-colored polo shirts at Target for our photo shoot.  In addition, she advised that a park setting works well for the background, and we headed off to our local park, Ogden Gardens, a beautiful place filled with trees and flowers. Fortunately, Alex was fairly cooperative as we took pictures, and we were pleased to have some good photos as a result.

After we sent the new pictures to the magazine, Roni contacted me again to let me know they wanted some pictures of Alex when he was little to help tell his story. Again, I went through our photographs and selected some of my favorites: a family portrait taken shortly before Alex was diagnosed with autism, a picture of Alex and me on the first day of school as he was headed off to special education preschool and I was off to teach my seventh grade students, and probably my favorite photo of Alex taken when he was two-and-a-half years old and happily reading [with his hyperlexic precocious reading skills] the business section of the Sunday New York Times.  Working with Roni was a pleasure because she was so helpful and accommodating.

A few days later, Woman’s Day articles editor Stephanie Dolgoff contacted me to ask some information about the old pictures and a few more questions about Alex. As she explained to me, this article was “especially close to [her] heart” because she has an older brother with autism who is now in his forties, and her parents had gone through experiences similar to those Ed and I had. Moreover, she expressed her desire that this article would “raise awareness about adults with special needs and their caregivers.” I appreciated her empathy, devotion to telling our story accurately, and her kindness.

Before the article could go to press, Maddi Scheier from Woman’s Day needed to fact check the article by reading aloud passages to me over the phone and making sure everything was true. Just as everyone else had been in this project, Maddi was friendly and pleasant, putting me at ease with her friendliness as well as New York accent that reminded me exactly of Ed’s sister. Now that all the pieces of the article had apparently been assembled, we waited until this week for the November issue to arrive at newsstands.

I suspect that my dad has been checking stores for the appearance of the November issue ever since October arrived, and apparently he talked with a CVS Pharmacy clerk who told him that grocery stores typically receive the new issues about a week before other stores. Somehow, he knew that grocery stores in our area were supposed to have the new issue on sale around noon this past Wednesday, and he immediately headed out in search of a copy for my mom and him and one for Ed and me. Successful in his quest, he immediately brought me my copy shortly after noon on Wednesday, and I was very pleased with the article. A surprise bonus was that the Woman’s Day Editor-in-Chief Susan Spencer previewed the article in her editor’s column with a very warm and thoughtful note about us. Needless to say, I have been very impressed with and appreciative of the Woman’s Day staff who worked on this article and showed great understanding and compassion, which has been a blessing.

As happy as we were with the article, we were overwhelmed by the response of our family and friends, who have shared their enthusiasm for our story being told in Woman’s Day. From my brother and Ed’s sister who couldn’t wait to read the article, so they read it in the parking lots of the stores where they purchased their copies, to the kind e-mails and hugs from friends and family, to my very sweet first hour seventh grade honors English class who applauded when my principal told the school on the morning announcements about the publication of the article, this has been a week where I have been reminded how blessed we are to have such supportive and loving people surrounding us. Although I wish our lives had never been touched by autism, I am thankful for the people whose love has blessed us and for those we have met on the journey. Just as I pray that my blog will help others dealing with autism, I also hope that the Woman’s Day article will help families like ours. And as I always promise in my prayers, “Lord, I will give You the glory!”

“Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesians 3:20

Parent or Guardian

Recently, I read two excellent blog entries written by mothers of children with autism who explain the process involved in being named their children’s legal guardians once they reach the age of eighteen.  Both mothers candidly describe the heartache they feel in taking legal action to make sure they will be able to make critical decisions for their children who cannot make those decisions for themselves. As Kim Stagliano explains in “Autism Sucks: And Then I Die”: “We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself.”

Similarly, Liz Becker shares her internal conflict about becoming her adult son’s guardian in “Guardianship and Autism,” noting, “In order to become the legal guardian and conservator for my autistic son, the court had to first find him incompetent to manage his own affairs. It was (and still is) a very emotional process. It is something that I had to choose to initiate because I knew Matt needed me to do it--but that doesn’t mean I took it in stride. It literally took years of thoughtful contemplation to even begin the legal process.”

Although guardianship laws may vary somewhat from state to state, the State of Indiana’s website explains the process quite clearly under the Family and Social Services Administration page: “Guardianship is an important consideration when young adults with developmental disabilities reach age 18. It is important for parents to realize that under the law everyone is considered to be an emancipated adult (their own legal guardian) at age 18, regardless of their disability. If the parent believes it is necessary for them to gain or maintain guardianship of their adult child after the age of 18, this can only be done through a court proceeding, which may be lengthy and expensive. Any action to establish guardianship of an adult with a disability must be filed in the probate court of the county of residence of the person for whom guardianship is being sought. Filing for guardianship is generally done with the assistance of an attorney, and includes a petition, followed by a hearing to prove that the person is incapacitated (unable to serve as his or her own guardian). Guardianship by another person by definition restricts that individual's rights and freedoms as a citizen, and should therefore not be entered into without serious consideration, including exploring alternatives which may better suit the individual's needs while still providing legal protection.”

Some of these rights that can be restricted once a disabled adult is deemed incapacitated or incompetent and requiring a legal guardian include the right to obtain a driver’s license, the right to own property, and the right to vote.  If parents wish to have some control over their disabled adult child’s affairs but not obtain guardianship, they may have legal papers drawn naming them as health care representatives and/or giving them power of attorney. In addition, Social Security may name a parent as a representative payee to oversee the distribution of disability benefits; similarly Medicaid may also name a parent to act as the adult child’s health care advocate. However, at times the adult with a disability may be required to sign his or her name on paperwork.

Although Ed and I have discussed and debated the pros and cons, we have opted not to seek legal guardianship of Alex at this point. Certainly, I respect the decision of those who have sought legal guardianship of their adult children and can imagine what a difficult decision that must be. When Alex was hospitalized last spring, we realized for the first time that we could no longer make some health care decisions for him since he was an adult. Therefore, we quickly had an attorney draw up legal papers naming us as Alex’s health care representatives so that we could make decisions regarding his medical care. I would recommend that parents of children with autism have this paperwork in place and ready when they turn eighteen instead of being caught unprepared in an emergency, as we were. We had assumed that as Alex’s parents, we would be able to make medical decisions for him, but we were wrong. Now that we have the legal papers naming us as Alex’s health care representatives, we take copies with us to every medical appointment so that we can be directly involved in Alex’s health care.

When we were filling out the countless forms last spring to obtain disability benefits for Alex, the question arose over and over as to whether we were Alex’s legal guardians. I found this somewhat surprising because none of my friends with adult children who have disabilities have sought legal guardianship for them. Nonetheless, I asked one of Alex’s caseworkers how common parents having legal guardianship is for adult children with autism, and she said that those whose parents could afford the legal fees typically obtained guardianship.  Since Social Security has named me as Alex’s representative payee to oversee the spending of his disability benefits, and Medicaid has approved me as his health care representative, we don ‘t feel the need at this point to seek legal guardianship. The government allows us to manage his finances and benefits, and the health care representative legal papers permit us to make decisions regarding his medical needs. For everything else, Alex is capable of signing his illegible signature, and he seems proud that he can do that for himself.

With the upcoming elections, Alex eagerly awaits his first time to vote for the President. As he has in every election since he turned eighteen, Alex considers the candidates and issues before making his decision and exercising his Constitutional right to vote. Just as I have in the past, this year I will again help him apply for an absentee ballot, for which he qualifies as a disabled adult, and he will proudly mark his ballot at home. To think of denying Alex his right as a citizen of the Unites States and his joy in participating in one of the rites of adulthood reconfirms our decision not to seek legal guardianship for him. In addition, the eternal optimist in me hopes that someday he will be more independent and not need us to make decisions for him. Relying on faith, we pray that having him declared incompetent will never be necessary, and we know with God all things are possible, including healing that would allow Alex to enjoy fully the freedom we cannot deny him at this point.

“Rabbi,” His disciples asked Him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

“It was not because of his sins or his parents’ sins, “ Jesus answered.  “This happened so the power of God could be seen in him.” John 9:2-3

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