Special Requests

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

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

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

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

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

The Joy of Spontaneity

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

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

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

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

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

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

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

Autism, Mutations, and Hot Sauce

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

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

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

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

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

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

Alex's Four S's

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

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

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

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

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

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

Interviewing Alex

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

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

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

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

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

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

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

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

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

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

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

Detour Ahead

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

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

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

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

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

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

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

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

Is There a Doctor in the House?

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

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

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

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

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

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

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

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

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

Winning the Prize

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

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

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

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

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

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

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

Making Progress

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

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

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

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

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

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

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

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

An "Aha!" Moment

Since Alex has been home from the hospital, one of the changes we’ve noticed is that he seems to have some loss of motor function, likely caused by the medications that are intended to keep his anxiety and aggression under control. He isn’t as sure on his feet, but more significant has been the effect upon his mouth. While Alex used to be an extremely neat eater, lately he seems to have trouble chewing and often lets food fall out of his mouth, leaving crumbs all over the table and on the floor. In addition, he has had difficulty for the first time taking pills, something he mastered at age five. This has created a new concern because he has nearly choked on his food a couple of times because swallowing appears more labored for him than previously.

Yesterday, we had a frightening experience that resolved itself quickly and led to a welcome “Aha!” moment. When Alex awakened yesterday, he was agitated, so Ed and I needed to stay with him every moment because his behavior was unpredictable. This meant that we even accompanied him to the bathroom because we didn’t trust him to be alone, even though he has toileted independently for years. After he finished, Ed and I happened to look in the toilet at Alex’s first morning urine and panicked at what we saw—instead of its usual yellow, his urine was quite dark, almost the color of iced tea. The fear in Ed’s face, I’m sure, mirrored my own, and I began to think of reasons why his urine would look abnormal.

At best, I suspected Alex might have a urinary tract infection that would cause the dark color, but I was more worried that he might be bleeding internally. This fear was intensified because Alex had two nosebleeds last week. The medications Alex is taking seem to make his skin dry, so we thought that they probably had made his nasal passages dry, as well, making them more likely to bleed. In addition, we had been giving him antihistamines for allergies, which probably intensified the dryness, so we stopped giving him those after he had the nosebleeds. Yesterday morning when Alex awakened, I had noticed that he had dried blood on his lips. At first, I thought his nose had bled some in the night, but closer inspection revealed that his nose hadn’t been bleeding; his mouth had been bleeding instead. This mouth bleeding, along with the dark urine, made us decide that we needed to take him to be checked to make sure nothing serious was wrong.

Wanting to avoid a trip to our local ER, we headed to a local urgent care facility affiliated with St. Anthony Hospital, where Alex had stayed this spring to get his medications adjusted. I figured that the urgent care would be faster and less traumatic; plus, they would be able to access his records from his hospitalization. Before we left, I grabbed a list of his medications and dosages along with our legal papers showing that Ed and I have medical power of attorney to make decisions regarding Alex’s health care, even though he is legally an adult.

When we arrived at the urgent care clinic, we were the only ones there, so I was able to talk to a nurse and doctor immediately. The doctor listened to my concerns and explained that she thought he would need to have lab work done, but they were not able to do lab work there. She told us that we would need to go to the ER instead, which was not what we wanted to do. As we were getting in the car, reluctantly headed to the ER, the doctor came running out to our car and suggested that we might want to go to their new ER facility in Chesterton, which may be faster than our local ER. Again, they would have Alex’s records, and since this ER was only a fifteen-minute trip away, we took her advice and headed to Chesterton Health and Emergency Center, affiliated with St. Anthony Hospital in Michigan City.

At the Emergency Center, the staff immediately greeted us since we were the only ones in the waiting room. As I filled out minimal paperwork because they were able to access Alex’s records, a friendly triage nurse took Alex and Ed back to an examination room where he took Alex’s vitals, which were normal. He then took us back to a very nice room in the ER with a private bathroom. The ER nurse sympathetically listened to our concerns and assured us that the doctor would see Alex soon. A few minutes later, the doctor examined Alex, showing great compassion for us, reassuring us that many people had come in with dark urine this week, probably because the intense heat was causing slight dehydration. As she examined his mouth, she noted that he had cheilitis, a yeast infection, in the corners of his mouth, as well as inflammation of his mouth, likely caused by the yeast. I had noticed the irritated spots on his mouth, but I thought he had a cold sore on one side and dry skin on the other, so I had been treating him with L-Lysine cream for the cold sore and Blistik for the dry skin.  She understood our concerns about infection and/or bleeding and ordered lab tests on his blood and urine.

Fortunately, Alex seemed to view this trip to the ER as fun and didn’t seem to be in any discomfort, so he was calm, pleasant, and cooperative with everyone who examined him. He didn’t even flinch when the lab technician took a blood sample, and he generously cooperated when he had to provide a urine sample. As we waited for test results, the nurses checked on us frequently to see if we needed anything and provided Alex with juice and applesauce while we waited. However, we didn’t have to wait long before the doctor came to tell us that all of Alex’s test results were normal—thankfully, no sign of bleeding nor infection, other than the yeast infection of his mouth. I explained that Alex has had yeast infections in the past and that he responds well to the antifungal drug Diflucan. She gave him a prescription for Diflucan to address his infection systemically along with a prescription for a topical antifungal cream to heal the rash around his mouth. We were thoroughly impressed with this ER. Not only were the facilities comfortable and new, but also every staff member was very kind and capable, especially in how they treated Alex. An added bonus was their efficiency, which meant he was seen, tested, evaluated, and treated within a short period of time without having to wait and worry needlessly.

Finding out that Alex had a yeast infection came as a relief because not only did it mean that he didn’t have a more serious condition, but also this diagnosis made complete sense, causing me to have that “Aha!” moment. Alex’s difficulty with eating and swallowing his pills were probably caused by the irritation in his mouth and lips. In addition, we had noticed that he sometimes seemed to have trouble swallowing, as though he had a sore throat. This, too, was likely caused by the yeast infection. He has been a little more agitated this week, which can be a sign of yeast overgrowth in people with autism, and I’m hoping that as his mouth heals, he’ll feel better and be less irritable. Ironically, a few days ago, Alex had told me totally out of the blue that he needed Diflucan. He hasn’t taken Diflucan in years, and we hadn’t talked about yeast, so this proclamation baffled me at the time. However, Dr. Alex had diagnosed himself; like his mother, reading those medical books comes in handy at times, I guess. Anyway, we were pleased to have such a good experience at the ER and get the medicine he needed. We’re hopeful that he will heal quickly so that he can feel better, which we hope will also address some the eating and agitation issues.  We’re also thankful that once again God led us to good people who could help Alex, reminding us that He will take care of our every need.

“Cast your cares upon the Lord and He will sustain you; He will never let the righteous be shaken. “ Psalm 55:22

Helping Hearts

This week, I was scanning through an old magazine at my mom’s house and ran across an article giving advice on how to help a friend who has cancer. Since two of my good friends have been diagnosed with cancer in recent months, the article piqued my interest. Most of the suggestions focused on what not to say, such as questioning the expertise of the patient’s doctor, offering advice on treatment, or telling the person, “I know how you feel” unless you have been a cancer patient yourself and really do know how the other person feels. While all of these ideas were reasonable, the article could have done a better job of telling a friend what to do to help.

Earlier in the week, a friend of mine called to see how things were going with Alex and apologized for not calling sooner. She had e-mailed me several weeks ago asking about his hospitalization, and I had detailed in a reply e-mail the problems he was having with anxiety and aggression and the need to have his medications monitored closely.  During our phone conversation, she explained that she hadn’t called sooner because she didn’t know what to say. However, she told me that she had been keeping us in her prayers. Of course, I understood how she felt because I wouldn’t know what to say to someone in our situation had I not lived it myself. Moreover, I was grateful that she did reach out and call to express her concerns, and I really appreciated that she was praying for us.

The old saying goes, “A friend in need is a friend indeed,” and I have found this adage to be true during the recent challenges and concerns we have had with Alex. Certainly, I knew we could count on our families to support us through this difficult time, but the outpouring of love from friends has been a welcome comfort. What has been interesting, though, has been the way that friends respond to us in different ways, offering encouragement and help. Through their examples, I can share ways for others to help families who are struggling with autism.

Several of my friends are wonderful listeners who allow me to think aloud, share my concerns, and support any of our decisions. Although my mom has been the primary shoulder I have cried upon the past few months, other friends have comforted me during teary times, as well. At other times, two of my male colleagues who are good friends have been especially helpful in empowering me to be strong, assuring me that I will be able to cope as they asked about Alex and patiently listened to my updates on his progress.

Other friends have admitted that they are hesitant to talk to me for fear they will break down and cry. I completely empathize with them because I am the same way. However, they have supported me through hugs, keeping my mind occupied by talking about other topics, and through their e-mails that say what they can’t tell me in person. Similarly, some friends have asked my mom how I’m doing and how things are going, knowing that she can give an honest assessment of the situation.

One of the most helpful gestures that family and friends have done has been to send e-mail notes. Often the notes are simply asking how we’re doing, letting us know that they’re thinking of us, and reminding us that we are in their prayers. Some have been especially good to check on us regularly through e-mail, and I appreciate this act of kindness.  Since Alex has been home, I don’t have a lot of time to talk on the phone, so the e-mails are a nice way to keep in contact with friends. I usually save the e-mails so that I can read them repeatedly as a reminder that we have people who love and support us. Others have sent very sweet cards and notes of encouragement, which I save to remind me how blessed I am to have friends who genuinely care. My friend K.C., who has been recovering from surgery and serious illness while chasing after two preschoolers and getting ready to move, sends me funny cards on a regular basis that always make me laugh, which I have really appreciated. That my friends take time out of their own busy lives to let me know they’re thinking of me has truly been a blessing.

Yet another act of kindness my friends have displayed has been in their offers of help. Some have let me know if there were anything they can do for us, they would be happy to do so. I know them well enough to know that these are not just words tossed off in a sense of obligation, but are genuine in their intent. I have no doubt that if I called these friends with a request, they would immediately be on my doorstep, ready to lend a hand. Others have made specific suggestions of tasks they would be glad to do for me. For example, my friend Debbie, who has faithfully checked in regularly to see how things are going, told me she would run errands for me, do my laundry, and/or sit with Alex. I know without a doubt that her offer is sincere because that’s the kind of thoughtful person she is.

As the autism rates climb rapidly, the likelihood of knowing a family who has a child with autism increases. I hope that by sharing the acts of kindness and generosity my family and friends have shown, others will know how they, too, can help these families dealing with the challenges autism brings. Then they, like those special people God has placed in my life, can bless others with their encouraging words and thoughtful gestures.

“When God’s people are in need, be ready to help them. Always be eager to practice hospitality.” Romans 12:13

Coming Home

Much has happened since my last blog entry a few weeks ago. Namely, about a week and a half ago, Alex was released from the hospital and came back home. After trying different medications at various doses, the nurse practitioner overseeing Alex’s case arrived at a regimen she believes will keep his anxiety under control such that he would be unlikely to have aggressive meltdowns, which initially put him in the hospital in the first place. The hospital assured us that he was stable enough to be released and sent home. While we had concerns, we had no other options. The state funding for residential care is still being processed, and the only placement the hospital could find for him was an academy for young adults with autism in Illinois that our insurance would not cover and cost $250,000 per year. Moreover, our efforts to get state funding for Alex’s disability would have been a waste of time because if he went to the school in Illinois, he would no longer be an Indiana resident and would not qualify for aid. Consequently, we brought him home, prayed hard, and hoped for the best.

So far, he has been fairly calm, although he has celebrated his freedom in being home by asking to go places several times a day, which means that Ed chauffeurs him around quite a bit of the time. In addition, he has been requesting his favorite foods, which means that we have been playing short order cook for him. Certainly, we are happy to have him home, but we hope he settles back into a routine where he isn’t so focused on food and gallivanting around town. Fortunately, he sleeps well at night and has generally been cooperative with us. We pray this continues.

Last week, Ed and I visited day programs for adults with disabilities operated by Opportunity Enterprises, an outstanding local organization that works with people who have various disabilities. While we were impressed with the main facility that offers workshops where clients shred documents from businesses and assemble jewelry boxes or medical equipment, we felt that Alex was not yet ready for this type of working environment. However, their second facility offered a school-type setting we felt was ideal for him because he loves to learn.  This week, Ed and I took Alex to see the “new school” so that he could get a sense of what it is like. The friendliness and caring of the staff members as well as the joy of the students confirmed our desire to place Alex there for day programming. Now we are in the process of doing paperwork to see if he can be admitted because we believe he will thrive in that setting where he can learn and be with peers. We are hopeful we can get him enrolled this summer so that he can get settled before Ed and I go back to school in August.

Meanwhile, we are still working to get state disability funding, which is basically a process of generating tons of paperwork and answering multiple questions and waiting to see what support we will get for Alex. This week, an agency affiliated with the state conducted phone interviews with Ed and me to assess Alex’s needs. We have answered several of these types of questions before, so we’re becoming quite good at the interview process from sheer practice. These questions focus upon health, motor skills, communication, daily living/self-help skills, and behavior. Of course, we’re thankful that Alex has perfect vision and hearing and that he can move freely without any physical impairment. In addition, the various toileting questions made me feel blessed that he can use the toilet independently, always staying clean and dry. His main areas of weakness lie in his communication and in his need for help with daily living and self-help skills along with his behavior, which can be unpredictable at times. 

Some of the questions struck me as amusing, such as “Can he sew a button on a shirt?” Heck no—his father with a Ph.D. can’t even do that, which is why they have me do it for them. Another question was whether he closes the bathroom door when he uses the toilet. This is something he usually forgets do to, but I am proud that he always flushes and puts the seat and lid down when he’s finished, which puts him ahead of most males in the toilet courtesy department. Besides asking about his habits, we were questioned about his hobbies and interests. As we answered these questions yet another time, I felt as though I were completing an online dating survey for Alex. So what would Alex’s profile look like?

I’m a tall, thin 20-year-old single white guy who likes sports, music, computers, watching television, and reading. I’m currently unemployed and living with my parents. Looking for someone willing to drive me around because I don’t have a driver’s license or car, but I enjoy going places. Willingness to prepare food (gluten-free and dairy-free because of my food sensitivities) for me is a must; I love all foods except popcorn and mashed potatoes.  Turn-ons include math, shrimp, jazz and country music, the Game Show Network, Wal-Mart, and surfing the Internet. Turn-offs include overly salty food, rap music, hockey, and elves. If you’re willing to tie my shoes for me, we can spend fun times at concerts, going shopping, or out to dinner. However, my medications make me sleepy, so I need to be home and in bed by 8:00 P.M.

On a more serious note, we keep praying that the state agencies that provide funding for services for the disabled will move along Alex’s application smoothly so that we have options as to what placements we can choose for him. Again, we wait with faith and expectancy to see what God has planned for Alex. In the meantime, we pray that his anxiety remains under control so that we can enjoy having him home and not worry about him. 

Also, I’d like to wish a happy Father’s Day to my dad, who has been wonderfully supportive and understanding of Alex, and to Ed, whose patience and unconditional love have deservedly made him Alex’s hero. I’m thankful to have both of them in my life and for Alex to have such good role models. Their faithful presences in his life are truly a blessing, and I thank God for them.

“The godly walk with integrity; blessed are their children who follow them.” Proverbs 20:7