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

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