Wednesday, December 29, 2010

Thinking Distortions

When Alex was younger and seemed to be contemplating the world deeply, we often wondered what he was thinking and wished that he could tell us what was on his mind. As the saying goes, we learned, “Be careful what you wish for, for you will surely get it.” Now that Alex can verbalize his thoughts and feelings, we have a better glimpse of his thought processes, but frankly, sometimes they’re really strange. Because of his tendencies to have obsessions, he often gets stuck on certain topics and can’t let go of them. This means that he needs to tell us his concerns repeatedly throughout the day, and we must patiently reassure him not to worry or remind him that the problem has already been solved. For instance, he has recently been concerned that he doesn’t have a good memory. I have read that those with savant memory skills often lose some of the phenomenal storage capabilities when their social skills improve. Since they are interacting with others instead of just focusing on memorizing details, the ability to store facts easily declines somewhat. Perhaps Alex recognizes this change in himself and feels frustrated that he can’t remember things as well as he used to be able. Nonetheless, we remind him that he memorized hundreds of digits of pi, and that fact convinces him that he does have a good memory.

Alex’s most recent obsession about his voice has about driven us crazy the past several weeks. After studying adolescence in medical books, he decided that he wanted to regain the voice he had prior to puberty. He would deliberately talk in a higher pitch voice, and he ordered a voice changer toy that altered the pitch of his voice as he spoke through this electronic speaker gadget. In addition, he purchased a sound level meter and studied the sound concepts of decibels and hertz, trying to understand the variation of voices between children and adults. Although we tried to assure him that his voice suited the size and age he is now, he insisted that his voice was “too damn deep.” Aside from some early teen rebellion, where he thought it was funny to use profanities, Alex never curses, so we knew he felt strongly about his worries about his voice. To make matters worse, he busily researched voices on the Internet and found some self-proclaimed expert [whose grammar and spelling were atrocious, adding to the lack of credibility] who wrote that surgery could be done on vocal cords to make the voice higher pitched. Despite our attempts to dissuade Alex, he was convinced that he wanted this surgery and was sure that it would cost about two thousand dollars, which he was willing to save and pay himself. Moreover, he wanted us to take him to the doctor so that he could discuss this medical procedure. Fortunately, with the retirement of his doctor and the transition to the new doctor requiring several weeks before we can see him, Alex had time to get this odd notion out of his head before he shared it with the doctor. After talking about his voice, little kids’ voices, decibels, hertz, voice changers, sound level meters, and surgery repeatedly every day for several weeks, Alex thankfully seems to have moved past this strange obsession. Perhaps it was a Christmas miracle; we haven’t heard about voices or changing them for a few days, so we’re hopeful that Alex finally has straightened out this idea in his mind.

As I mentioned in another blog entry “Stages,” every annoying phase eventually disappears and is usually replaced by an equally annoying phase. As soon as Alex stopped talking about his voice, he started another weird habit. For some reason, he has decided to eat with his eyes closed. It’s actually pretty amazing how adeptly he can wolf down food without looking at his plate, but he has managed to eat well for the past few days while keeping his eyes closed. He’s doing this with a smile on his face, so at least he’s not agitated or upset, as he was during the voice obsession, which is an improvement. The other night, we took him to a restaurant, where he ate his entire meal with his eyes closed. I suspect this bothered Ed more than it bothered me, but I was sitting next to Alex, so I didn’t have to watch him the entire time, as Ed did because he was sitting across from him. I think if he continues this trend, we’ll just have him wear sunglasses if he’s eating in public so that his unusual behavior is less obvious. While we have asked him why he’s eating with his eyes closed, Alex hasn’t yet revealed his reasoning for this behavior. Perhaps this is for the best; he probably has some distorted reasoning that makes perfect sense in his mind. In the meantime, we’re just glad he’s not eagerly waiting to have unnecessary surgery, and we know that like everything else, “This, too, shall pass.”

“How can you comfort me? All your explanations are wrong!” Job 21:34

Sunday, December 26, 2010

Twelve Days

As I mentioned in a recent blog entry “Carols,” one of Alex’s current favorite Christmas songs is “The Twelve Days of Christmas.” Since he likes numbered lists and that song, I have created a version especially for him, thinking of the things he’d really like for each of the dozen days.

Alex’s Twelve Days of Christmas



On the twelfth day of Christmas, my Alex found with glee

Twelve-month calendars,
Eleven almanacs,
Ten lists in notebooks,
Nine calculators,
Eight game shows to watch,
Sevens on slot machines,
Six Google searches,
NASCAR’s 5 car,
Four record temps,
Three precise clocks,
Two slip-on shoes,
And pi digits to infinity.

Merry Christmas to all, especially to those children with autism who make our lives more interesting with their unique takes on the world!

“So if you sinful people know how to give good gifts to your children, how much more will your heavenly Father give good gifts to those who ask Him.” Matthew 7:11

Wednesday, December 22, 2010

Christmas Carol

Every year between Thanksgiving break and Christmas vacation, I teach an adaptation of Charles Dickens’ classic tale A Christmas Carol with my seventh grade English classes. Like my students, I am fascinated with the ghosts and the scenarios they show the main character Scrooge to help him change his ways. After the ghost of Jacob Marley, his friend and business partner, warns Scrooge of the three ghosts who will visit him, the first ghost to appear is the Ghost of Christmas Past, complete with light streaming from his head, symbolizing that he will enlighten Scrooge by showing him important memories from his past. If the Ghost of Past came to visit me, I can imagine being shown taking little Alex to every therapy I could find for him: speech, occupational, sensory integration, visual, and cranial. In these scenes from the past, when I’m not working with Alex and trying to improve his speech, fine motor, or social skills, I am hunched over a computer or a book, researching and making sure that I know everything I can about autism and how to help him. After watching these scenes of my fretting over Alex, I imagine that the ghost would suggest to me that I often wasted time worrying instead of enjoying those early years with Alex. Older and wiser, I would agree with that assessment and vow to live with less fear and more faith so that I could enjoy days instead of enduring them.

After my journeys with the Ghost of Christmas Past, the friendly giant Ghost of Christmas Present would arrive with his glowing torch and show my life as it currently exists. The little boy Alex has now grown into the six-foot-tall young man Alex, who spends a great deal of time hunched over a computer or a book, researching and making sure that he knows everything about the world. While he still struggles with speech, fine motor, and social skills, he generally functions fairly well in many day-to-day routines. I imagine that the Ghost of Present would also show scenes of Alex doing typical things: watching sports on television with Ed, enjoying dinner at a restaurant with us, playing games with me, taking out the garbage, and listening to his favorite music, among other things. Observing Alex engaged in normal activities would make me smile and remind me that he has made good strides since those early days; moreover, he continues to make progress in various ways over time.

With the arrival of the Ghost of Christmas Future, I would empathize with Scrooge when he says, “Ghost of the Future! I fear you more than any specter I have seen.” While the future holds many uncertainties for all, as the parent of a child with autism, I worry what Alex’s life will be as he grows older. Will he be independent? Will he be happy? Most of all, what will happen when we’re not around to take care of him and to try to make his life happy, should he still need supervision and help? When my mind goes to those dark places, I want answers, just as Scrooge does in his vision of the future: “Are these the shadows of the things that will be, or are they shadows of the things that may be only?” Just as Scrooge has to face the future with hope, I have to reflect on the grace of God, who has led us through the past, guides us in the present, and will watch over us in the future. I need to have faith that God loves Alex even more than Ed and I do, and He will protect him if we cannot. As we step into the unknown, I know that He already has a plan, and I need to trust that the future—just as the past was and the present is—will be fine. And so, in the words of Tiny Tim, “God Bless Us, Every One!”

“Can all your worries add a single moment to your life?” Matthew 6:27

Sunday, December 19, 2010

Cakes

For Alex’s birthday this week, I continued our tradition of making a special cake from scratch for him. Even though I have no artistic talent, I have tried to decorate birthday cakes that reflect his particular interests or favorites each year. For his first birthday, I copied a picture from a magazine, and the theme was teddy bears sledding, which worked well for his winter birthday since he liked teddy bears. Using a Bundt cake with white frosting to create the snowy hill, I then put icing scarves and mittens on Teddy Graham cookies. Next, I set the teddy bears on Life Savers candies and Fruit Stripe sticks of gum with rolled ends to look like inner tubes and toboggans. When he was little, his birthday cakes revolved around television characters he especially liked. One year I made an Elmo from Sesame Street cake, complete with a tangelo nose. Another year I baked a cake that looked like Arthur from the book series and the PBS cartoon show. When he was a fan of Bugs Bunny, his birthday cake was shaped like a bunny with big ears. The only less-than-successful cake during these early years was a Barney the dinosaur cake in which I dyed coconut purple to look like Barney’s fur. Although Alex was pleased with the cake, Ed remarked that Barney looked as though he’d rolled around in the lint trap of the dryer. The coconut had not dyed well, and it did look like lint. However, the cake did taste good.

Shortly before Alex’s seventh birthday, we discovered that he had sensitivities to glutens and caseins, which meant that I had to learn to bake without wheat flour and milk products. Fortunately, I discovered a fantastic recipe for yellow cake in one of Carol Fenster’s allergy cookbooks that is made with gluten-free flours and without milk products. Not only does the cake have a nice, light texture, but its flavor is delicious, enhanced by the addition of orange or lemon flavor. With Pillsbury or Duncan Hines vanilla frosting, which is gluten-free and dairy-free, the cake is easy to make and decorate. By that time, Alex was less interested in cartoon characters and more interested in vehicles, so his cakes were in the shape of a school bus or NASCAR race cars. After buying a Wilton NASCAR cake pan, I was able to make cars easily without having to cut the cake into the right shapes. One year, Alex had a Mark Martin AAA race car, and another year he had a Dale Earnhardt, Jr. AMP energy drink car. Both cars were made from the same pan; I just changed the details by making the different logos with icing.

Besides characters and cars, Alex’s birthday cakes have also reflected his favorite activities and games. Not surprisingly, with his love of math, one of his all-time favorite cakes was the calculator cake, which was one of the easiest to make since it was just a rectangle with candy numbers positioned on icing “buttons.” Another year, I took a round cake, iced it with white frosting, and drew red laces with gel icing to make a baseball cake for him. A square cake divided into sections became a Monopoly game board for a birthday cake the year he loved playing Monopoly on the computer as well as the traditional board game. Alex usually mentions the slot machine cake as one of his favorites. That year he had become interested in casino games, especially slot machines, so I decorated a rectangular cake and added a handle to make it look realistic. This year, I decided to try something different and made him cupcakes sprinkled with red sugar and placed them on a red three-tiered tray. Of course, his favorite color right now is red, so he was pleased with how this “cake” looked. As I lit all nineteen candles, I was pleased knowing that unlike when he was little and had oral motor issues, he could blow out his candles. For several years, he was unable to blow out his birthday candles; mastering this task was a big milestone for him. He is proud that he can do this seemingly simple task by himself without needing us to help him extinguish the candle flames, and we see this annual ritual as a reminder of the progress he’s made with each passing birthday, thankful for the improvements that have occurred over the years.

“Present a cake from the first of the flour you grind, and set it aside as a sacred offering, as you do with the first grain from the threshing floor. Throughout the generations to come, you are to present a sacred offering to the Lord each year from the first of your ground flour.” Numbers 15:20-21

Wednesday, December 15, 2010

Shopping

Every November, I start my shopping quest to find birthday and Christmas gifts I think Alex would like. With little guidance from him, we consider his interests, which are sometimes unusual, and try to find gifts that reflect his current preoccupations. One year, he was especially interested in astronomy, so he received books and activities about the stars and planets, along with a telescope from Ed’s brother. Another year, he was fascinated by casinos and gambling; therefore, many of his gifts were poker and blackjack video games and toy slot machines. As I mentioned in my earlier blog “Marking Time,” Alex rarely gives specific requests for gifts, but last year he asked for old calendars. Knowing that these calendars were likely to be lined up on the floor and perhaps even accompanying Alex to bed, as his favorite books often do, I decided that linen calendar towels would be the best way to fulfill Alex’s wish. Thankfully, I was able to find some linen calendar towels from the 1950’s, 60’s, 70’s, 80’s, and 90’s on eBay, and after some successful bidding, purchased them for Alex for Christmas. These old calendars satisfied his request nicely, and this past year, he has studied them carefully and enjoyed looking at the patterns of how the days align in each month of each year. While I was trying to find those calendars last year, I was reminded of a story another autism mom had told of her child giving only one request for a Christmas gift: a letter S. Although she didn’t know what the significance of the letter S was, for it was neither her child’s initial, nor would the child explain why he wanted it, she found a wooden letter S for him, and he was delighted with it. Even though we don’t always understand why our kids like what they do, it’s gratifying to see them pleased when we find items for them that reflect their special interests.

When I go shopping for Alex, I usually start with the games sections of Walmart, Kmart, and Target because he really likes board and card games. In addition, he is fond of handheld electronic games and video games for his computer. When he was younger, I spent a lot of time in the educational toys sections of stores which offered electronic activity toys that engaged him. We were always especially impressed with the Leap Frog educational toys not only because Alex would play with them for hours, but also because they were remarkably durable. Those Leap Frog toys got stepped on, dropped, knocked down the stairs, and handled constantly, and yet they lasted for years. In recent years, I find myself drawn to the men’s gift displays in stores, which usually consist of interesting gadgets, such as mini binoculars, flashlights, coin counters, and magnifying glasses. All of these types of grown-up toys appeal to Alex, and they make great stocking stuffers for him. Of course, with Alex’s love of books, I spend a great deal of time at Barnes and Noble bookstore looking for books Alex might like. When I buy books for Alex on meteorology, math, or interesting facts, I often pick up a second copy as a gift for my dad. I always find it interesting that even though they are nearly fifty-five years apart in age, Alex and my dad have awfully similar tastes in nonfiction books. Sometimes when my parents come to visit, my dad picks up books of Alex’s and reads through them, which makes choosing gifts easier for him because I simply remember which books he seemed to like, and I get the same book for him that Alex already has.

What has made shopping for Alex much easier for me is the Internet. With a wide array of possibilities plus the convenience of shopping from home, online stores, such as Amazon, allow me to find unique gifts for Alex. I’m always amazed when I use Google or the search function of online stores how many items I discover that Alex would like. In addition, we receive several specialty catalogs in the mail that contain a variety of items that appeal to him, and I also order online from these catalogs, namely Hearthsong, Mindware, and Signals. Knowing Alex’s fascination with math, our siblings often discover clever gifts for him they purchase online, too. Similarly, a friend of mine who shares some of Alex’s interests recently suggested a pi shirt he’d seen online that he thought Alex would like; he had already ordered one for himself. I appreciated his thinking of Alex and for letting me in on a great deal. A couple of weeks ago, I ordered several gifts from various online sites, and last week the fruits of my labor were revealed as all of the packages started arriving on our doorstep. Fortunately, Alex shows no desire to peek at his gifts ahead of time because he likes to be surprised, so we don’t have to be particularly clever about hiding his presents. Now that my shopping is nearly complete, I just need to sort the gifts between birthday and Christmas, wrap them, and wait to see Alex’s reaction, which is what I look forward to all the while I’m shopping for those unusual gifts.

“The humble will see their God at work and be glad. Let all who seek God’s help be encouraged.” Psalm 69:32

Sunday, December 12, 2010

Santa

Recently one of my autism mom friends shared that her teenage son still writes letters to Santa Claus. She told me that she thought he didn’t still believe in Santa, but he wasn’t taking any chances. I found this endearing and could picture him thinking carefully about his wish list. As I mentioned in my recent blog entry “Request Routine,” Alex rarely asks for any specific gifts, so we have to guess what he’d like for his birthday or Christmas. Consequently, he never wrote letters to Santa, but he believed in him far longer than most kids do. We allowed him to enjoy this fallacy of childhood until he was about thirteen years old for the following reasons: A) He was homeschooled, so we didn’t have to worry about classmates making fun of him for believing or ruining the joy behind the myth of Santa Claus, as some kid did for me when I was in second grade. B) We didn’t want him telling his younger cousins that Santa doesn’t exist, spoiling their fun. C) We enjoyed watching how happy the thought of Santa’s bringing gifts to him made Alex. On a side note, we let him believe in the Tooth Fairy and Easter Bunny longer than he probably should have, as well. The only problem was that we had to make sure that he understood while Santa, the Tooth Fairy, and the Easter Bunny were made up, the things we had told him about Jesus and God were real. Fortunately, he seemed to understand the difference without having a crisis of faith.

While Alex liked Santa, he had no desire to see him in person. When he was about three years old, he went with his cousin to see Santa. His cousin, who was about 4 ½ years old at the time, was very outgoing and talkative sitting on Santa’s lap, but Alex wanted no part of that. Truthfully, I never had any desire to see Santa when I was a child, so I completely understood his hesitation. My parents have pictures of my siblings with Santa but none of me with Santa because I was always too shy, and they understood that, just as I empathized with Alex’s unwillingness to meet and greet Santa. Alex seemed to prefer cartoon versions of Santa rather than real people dressed as Santa anyway. One of his favorite annual Christmas cartoons is The Year without a Santa Claus. However, his favorite character in this story is not Santa; instead, he prefers Heat Miser and Snow Miser, whom he calls “The Hot and Cold Guys.” He thinks their song and dance is funny, and with his love of meteorology, he likes that they mention weather conditions in their songs, such as, “I never want to know a day that’s under sixty degrees; I’d rather have it eighty, ninety, one hundred degrees!” While he found these little guys amusing, for some reason, he had a distinct dislike for elves. Whether they’re Santa’s elves, Snap, Crackle, and Pop from Rice Krispies cereal, or the Keebler cookie elves, Alex made his displeasure with them known, saying whenever he saw an elf, “DON’T LIKE ELVES!” We had a cute cookie container that he would hide because he didn’t like the pictures of the Keebler elves on the lid. Apparently, he has gotten past that feeling because he assures me now that elves are okay with him.

One of the Santa traditions that Ed started doing with Alex when he was small was leaving cookies and milk for Santa. This was new to me, as my family had not done this on Christmas Eve when I was growing up. Ed made a point of explaining the snack and helping Alex leave it so Santa would find it on a table next to the fireplace where Santa would come down the chimney. I always found it ironic that I did most of Santa’s job—figuring out what gifts to give Alex, finding them, buying them, wrapping them, and arranging them nicely for him to open on Christmas morning—yet Ed always devoured the snack Alex had left behind for Santa, making sure to leave some crumbs and a thank you note for Alex from “Santa.” I might add that I made those cookies from scratch, so “Santa” was a smart guy to take advantage of the opportunity to eat what my in-laws praise highly and affectionately call “Aunt Pam” cookies. At least “Santa” was nice enough to leave a note of gratitude. Nonetheless, the planning, shopping, wrapping, and arranging were always rewarding because Alex showed his delight with the presents Santa had brought him, making everything worthwhile.

“Then we will no longer be like children, forever changing our minds about what we believe because someone has told us something different or because someone has cleverly lied to us and made the lie sound like the truth.” Ephesians 4:14

Wednesday, December 8, 2010

Carols

Around Thanksgiving, Alex apparently was not in an attitude of gratitude, for he was rather disgruntled, muttering and complaining. Since he’s usually good natured and pleasant, we tried to figure out what might have irritated him. Ed and I assessed what Alex had eaten, whether he was picking up on our pre-holiday stress, and even how weather changes affected him since he seems to be a human barometer sensing when low and high pressure systems develop. Of course, we tend to forget that he is a teenager, after all, and some of his behavior may simply be typical teen moodiness. Nonetheless, we figuratively walked on eggs for a few days, watching and waiting for muttering to magnify into meltdowns. Once again, we were thankful for the soothing effects of the sedative Ativan. Fortunately, we had not had to give him Ativan for quite a while, so we had forgotten how effective it truly is for Alex when his anxiety rages out of control. In addition, we looked for other ways to soothe him and remembered that music usually calms him. As a result, we discovered that Christmas carols make him remarkably happy and serene.

After we came home from a good session at music therapy last week, Alex sat on the couch scowling but wouldn’t tell us why he wasn’t pleased. I offered to teach him how to play “Jingle Bells” on the piano and began picking out the tune and writing the letter notes for him so that he could play the song if he wanted. Since he didn’t follow me into the room where the piano is, I assumed that he was still sitting on the couch in a foul mood. I was wrong. Ed came and told me to keep playing because Alex was acting the happiest he had in a week. Bringing my holiday songbook in for Alex to choose a song for me to play, I discovered that Alex was indeed much happier than I’d left him; he had a huge smile on his face. Returning to the piano, I played several Christmas carols for him and could hear him in the other room clapping and even doing what we call the “happy hop,” a gallop he does whenever he’s delighted. Had I known that he enjoyed listening to my piano playing—despite my limited ability, I would have played for him sooner. Since then, we’ve had Christmas music playing on the CD player or the Music Choice cable channel, and his mood has improved significantly. Instead of being Ebenezer Scrooge, he’s become more of a jolly Santa Claus, laughing and enjoying the Christmas season.

Like many children, Alex’s favorite Christmas song is “Jingle Bells,” with its repetitive lyrics and instantly recognizable melody. This year he has another Christmas carol he especially likes, “The Twelve Days of Christmas.” Since he likes numbers and counting, that song with all its numbered gifts holds appeal. For some reason he also currently has a fascination with the number twelve, always betting twelve chips when he plays video poker and giving “high twelves” instead of “high fives” as greetings. (He does this by giving “high fives” with both hands, and then putting one finger up on each hand and slapping those index fingers against the other person’s hands: five plus five plus one plus one, equaling twelve.) Besides the traditional “Jingle Bells” and “Twelve Days of Christmas,” Alex is quite fond of a contemporary Christmas song sung by gospel quartet Ernie Haase and Signature Sound, “Glory to God in the Highest.” Besides the beautiful four-part harmonies of this song, it has a catchy rhythm that makes Alex want to clap along to the beat as he listens to the CD. As we celebrate the Christmas season, we are thankful for the blessings God has given us and for the joy found in the carols that praise Him. In the words of Alex’s gospel favorite: “Glory to God in the highest, peace on earth and good will to men. Heavenly angels announce His arrival in the little town of Bethlehem. Hallelujah to the Lord, sing holy, He was born to save the world from sin. Glory to God in the highest glory, hallelujah to the Lord. Amen.”

“The Lord is my strength and my shield. I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving.” Psalm 28:7

Sunday, December 5, 2010

Change

Truthfully, I don’t like change; in fact, I prefer the predictability of the comfortable rut. To illustrate, I live in the town where I was raised, and for more than twenty-six years, I’ve had the same teaching job since I graduated from college. When products tout that they are “new and improved,” I tend to find them just “new.” Ironically, Alex should be the one who doesn’t like change since resistance to change is a common characteristic in people with autism, but he much more readily embraces change than I do. He views something new and different as an adventure, which is a good trait he must have inherited from his father because he certainly didn’t get it from me. When occasions arise that—as Pastor Joel Osteen describes—move me out of my “comfort zone,” it takes some time for me to overcome initial anxiety, make plans for the transition, and adjust to the new situation. This week I was suddenly pushed into one of those circumstances of change that made me uneasy.

This week a friend of mine who goes to the same beloved doctor that Alex and I do passed along the news that our doctor was closing her practice due to health issues. In my earlier blog “Doctor,” I told about how she had been such a blessing to our family, offering compassion and support as well as implementing cutting-edge therapies with Alex that improved his health and his behavior. While I knew that her increasing age and declining health made her retirement imminent, I was still jolted by the official announcement that she would no longer be our doctor after more than a dozen years. In the past few months, Alex has voiced concerns about when she would retire, and I was able to reassure him that she was not going to retire anytime soon, as she had expressed her plans to continue working. Perhaps Alex sensed something that we did not. Sometimes he seems to have an odd sixth sense about things that gives me pause for thought. Last year, he kept telling me that I needed to call or go to our doctor, but he wouldn’t tell me why. After several weeks of fretting and a few anxious meltdowns, he finally blurted out, “Mommy is having problems with menopause!” While I wasn’t having any problems, nor was I going through menopause, he had developed worries after reading his medical books. In a strange twist, however, a few months later, I began having some issues related to hormonal changes associated with pre-menopause: migraines, dizziness, and anxiety attacks. Alex was right; I did need to go to the doctor, who reassured me that these symptoms were typical and adjusted the dosage of my thyroid medicine, which alleviated the problems. Now that he has predicted these two events months in advance, I’m beginning to think we should consult him about future financial investments.

After having a few days to deal with my initial anxiety about losing the doctor I trust with Alex’s health and mine, I’ve begun making plans for the transition to a new doctor. While I’d like to find a local doctor with experience in biomedical treatments for autism, my other autism mom friends indicate there are none around here. My next best option is to find a doctor who is open to supervising and supporting the treatments we’ve been doing with Alex: gluten-free and casein-free diet, nutritional supplements, low-dose Prozac, and methyl B-12 injections. Taking the advice of people whose opinions I value, I have decided that Alex and I will go to the same family doctor Ed does, which will make the transition easier. My sister and her family also have gone to this doctor for several years, and they have complete confidence in him, too. The next step is to transfer our records and make an appointment and pray that Alex will adjust to this major change well. We went through a similar situation when his very kind and gentle pediatric dentist who had treated him from ages three to thirteen moved his practice to another town. While we could have continued going to him, the increased drive time from five minutes to more than thirty was a problem, especially since Alex’s behavior was unpredictable at that point. In addition, he was going through the phase where he’d get upset about gas prices anytime we passed a gas station, and we thought it was highly unlikely that we could avoid all gas stations to get to the new office. At first I felt trepidation about leaving a dentist I trusted and genuinely liked, but I knew that a change was necessary. We found another dentist here in town who specializes in pediatrics and who has many special needs patients. As it turned out, he was the ideal person to work with teenage Alex, just as the other dentist was perfect for younger Alex. The current dentist has a practical, take-charge personality that reassures me, and his dental hygienist is absolutely wonderful with Alex. Most importantly, Alex still really likes going to the dentist; changing dentists did not change his positive attitude. I know that God guides our steps, and just as He made the path smooth for Alex to transition from one dentist to another, I’m sure that He will help us make the change from one doctor to the new one, making certain that Alex gets the care and understanding he needs.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

Wednesday, December 1, 2010

Request Routine

One of the tasks I take on during the holiday season is acting as Alex’s gift coordinator. Around Thanksgiving, his aunts and my mom begin asking me for suggestions of what he would like, and over the years I’ve developed a routine to make sure that gifts won’t be duplicated and that Alex gets presents he has indicated he wants. Since Alex’s birthday falls in the middle of December, we also figure out ideas for birthday gifts along with Christmas gifts. Not surprisingly, Alex eagerly anticipates December since his favorite holiday, Christmas, as well as his birthday fall in the last month of the year. Although he arrived three and a half weeks earlier than his original due date, Alex enjoys having a birthday right before Christmas instead of in January. He likes the excitement, music, and decorations associated with Christmas, and having his birthday in the midst of all that fun is a treat for him. I sometimes think that he believes that his birthday is a season in itself, lasting from his actual birthday through Christmas to New Year’s Day.

Despite his enthusiasm for his birthday and Christmas, Alex rarely makes specific gift requests; therefore, most of his gifts are complete surprises that we have chosen for him. While we have ideas about his current topics of interest, we’re never quite sure how he’ll react to the gifts we have found relating to those favorite themes. Most of the time he seems quite pleased with his gifts, but he is sometimes overwhelmed by the sheer number of presents rolling in for his birthday and Christmas. Consequently, we often suggest gift certificates for him because then he can choose what he’d like himself. He is quite adept at shopping online, finding the best deals on items he wants, and then making selections between the various options. Moreover, he takes his time with spending these gift cards, using them gradually as various things occur to him that he’d like to have. Recently, he spent the last of the Amazon gift card that his aunt, uncle, and cousins sent him last year for Christmas; he had made various purchases of unusual electronic gadgets throughout the year and enjoyed having the chance to select these gifts on his own.

While my parents often come up with good gift ideas for Alex because they know his interests well, we have developed a routine my mom and I call “shopping out of my cart.” Since Alex has unusual interests, whenever I see special things I think he would like, I have learned to purchase them right away instead of waiting and risking their not being available later. Sometimes this leads to overbuying on my part, so my parents will graciously buy the items from me to give to Alex themselves. I help them by shopping, and they help me stay within my planned budget. My sister, who majored in math in college, understands and appreciates Alex’s love of mathematics, so she comes up with clever gifts that reflect their shared love of numbers. Similarly, Ed’s youngest sister has comparable musical tastes to Alex, so I put her on country music detail. When I suggest Kenny Chesney or Alan Jackson CD’s for him, she knows exactly what I mean, which makes it easy for me. Ed’s other sister likes to give him “fun” gifts; therefore, she usually winds up getting games for him. Even though Alex thinks that books are fun, his aunt prefers to select games since she likes to play board games, too. Ed’s brother, who shares Alex’s love of books, often tracks down interesting books and other items Alex likes on the Internet for him. Of course, coordinating and discussing these various gift ideas, especially since Ed’s family lives on the East Coast in three different states, is made much simpler by using e-mail. Alex has no idea how much coordination goes on behind the scenes prior to his birthday and Christmas, but he is very blessed to have generous extended family members who love him dearly and want to make his celebrations the best they can be.

“And we will receive whatever we request because we obey Him and do the things that please Him.” I John 3:22

Sunday, November 28, 2010

Recommended Reading

Since Alex was diagnosed with autism nearly fifteen years ago, I have read hundreds of articles and dozens of books about autism, trying to understand how this condition affects him and how we can help him overcome the challenges he faces. In addition, I have bought many books on autism for reference, and my family room bookshelves are filled with medical books, psychological texts, and parent memoirs, all focusing upon how autism impacts daily life. One of the blessings of having been an English major as an undergraduate and graduate student is that I learned to read very quickly out of necessity. Moreover, I had excellent teachers who developed critical thinking, research, and communication skills, which helped me learn to assimilate what I’ve read into what I already know to give it meaning and context. While I don’t have Alex’s photographic memory, I can remember the gist of what I’ve read. Like Alex, I can quickly find information I need, whether by using the index of a book or a Google search on the Internet. Just as his research skills have enabled him to learn more about pi, meteorology, and astronomy, mine have led me to interesting discoveries about autism that have made our lives better. Of the many excellent books I’ve read, six stand out as especially important and useful. I often recommend these titles to other parents of children with autism, and I pull my own copies of these books from the bookshelf frequently for reference.

Recently, a friend asked me about how to help her child with sensory integration disorders, and I immediately recommended The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction by Carol Stock Kranowitz, a teacher who worked with children with sensory issues for many years. This book not only clearly explains why some children react as they do to sensory issues, but also offers many helpful and practical ideas and suggestions about how to help children deal with these problems, which often affect children with autism. Another excellent book written by a professional who has worked with children with autism is Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies—The Groundbreaking Program for the 4-A Disorders by Kenneth Bock, M.D. and Cameron Stauth. Dr. Bock does a wonderful job of detailing the increased incidence of these childhood conditions, the possible links between them, and ways to manage them through nutrition and diet, supplements, detoxification, and medication. Since we have taken the biomedical approach to dealing with Alex’s autism, Dr. Bock’s book reinforced our commitment to making Alex healthier through the gluten-free and casein-free diet, nutritional supplements, chelation of heavy metal toxins, anti-fungals, and Prozac. Dr. Bock’s book is not only thorough in its explanation of these childhood conditions and the ways to treat them, but the writing is also very readable and interesting. Of all the medical books I have, Biological Treatments for Autism and PDD by William Shaw, Ph.D. is the most dog-eared and highlighted text. Moreover, I have probably read this book more times than any other autism book I own because it offers a wealth of information about the medical issues related to autism. Dr. Shaw, a biochemist who founded the Great Plains Laboratory, has extensively researched autism and the aberrant lab test results children with autism often display. (Once when I called the Great Plains Laboratory to ask a question about Alex’s results, I got to speak directly with Dr. Shaw. I probably sounded like a groupie as I enthusiastically told him I’d read his book many times.) After running various hair, stool, urine, and blood tests on Alex through the years, we discovered that he, too, showed unusual results that needed to be addressed to improve his health, which ultimately improved his behavior, as well. Like Dr. Bock, Dr. Shaw takes a biomedical approach to autism, explaining the benefits of diet, chelation, supplements and medication. While Dr. Shaw’s writing style is not as easy to read as Dr. Bock’s because of the technical nature of his topics, his book is worth the effort, for all of the information he presents offers hope and healing for children on the autism spectrum.

While the books written by professionals have been helpful, I especially like books written by parents of children with autism. Karyn Seroussi, the mother of a child with autism, wrote one of my favorites, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery. Not only does she describe her experiences parenting a child with autism, but she clearly summarizes the biomedical research she discovered that helped her son improve. In addition, she shares helpful tips that she learned along the way. Every parent who has a child with autism should own a copy of this book for reference. Another book written by a parent that I highly recommend is Beth Kephart’s A Slant of Sun: One Child’s Courage, a beautifully written memoir about her son with an autism spectrum disorder. Throughout the book, she describes her experiences in such vivid detail that she allows the reader a true glimpse of what her life is like, and I identified with her as a mother, especially when she notes: “In these years as Jeremy’s mother, I have learned how to be wary—how to go out into crowds a perpetual two steps ahead so as to reconnoiter, assess the risks, and steer a sheltered path.” As I described in another blog entry, “Remembering the Roses,” much of my life involves clearing paths—literal and figurative—for Alex so that he doesn’t stumble along the way. While most memoirs about children with autism are written by mothers, I am especially fond of one written by a father. Running with Walker: A Memoir by Robert Hughes is a candid account of life with his son who has autism. Despite all the challenges Walker faces, his father maintains a sense of hope and finds humor in the unusual circumstances autism often presents. I believe that the best books are those that make us laugh and cry, and Running with Walker moved me to both tears and laughter through its honest look at life with autism. Having celebrated Thanksgiving this week, I am thankful to those professionals and parents who have shared their knowledge, experience, and lives through their writing so that others can understand and help those children we love with autism.

“Wise words come from the lips of people with understanding…” Proverbs 10:13

Wednesday, November 24, 2010

Thanksgiving Praise

Every morning when I wake, every night before I go to sleep, and several times throughout the day, I count my blessings. While raising a child with autism is often overwhelming—even to the point that recent research shows that parents of children with autism display symptoms of post-traumatic stress similar to those experienced by soldiers returning from war—my daily routine of trying to focus on praise instead of problems has been therapeutic and has helped put our lives into perspective. As we celebrate Thanksgiving tomorrow, I count our many blessings.


•Other than issues related to his autism, Alex is remarkably healthy. Thankfully, he has never been to the hospital since he was born, has never been very sick, and has never even had a cavity. I’m also especially grateful that Ed and I are very healthy so that we can be at our best to take care of Alex.

•Alex has always had a good appetite and been willing to eat a variety of food. Since he must avoid glutens (most grains) and caseins (all milk products), his diet could be quite limited were he not willing to eat most vegetables, fruits, meats, and rice in various forms, including rice milk, rice flour baked goods, and rice pasta. In addition, we are fortunate to have a nearby health food store and a grocery store that carry gluten-free and casein-free foods that he enjoys.

•Although raising a child with autism can be expensive, particularly when insurance will not cover certain therapies, we have never had financial worries, which is a great blessing. Whatever Alex needed, we had the money to pay for it. In addition, Ed and I are fortunate to have jobs that allow one or the other or both of us to be home with him at all times. This has permitted us to home school him throughout his education, and we feel he has benefited from one-on-one instruction tailored to meet his needs.

•Every time I hear Alex flush the toilet, I am thankful. After years of toilet training him, we began to wonder if he’d ever toilet independently. The relief in knowing that he can manage this basic task of staying clean and dry round the clock on his own, along with the time I save in clean-up and doing laundry, always makes me happy.

•Even though he sometimes drives us crazy telling us things repeatedly, we appreciate that Alex can speak and tell us what he’s thinking and feeling. Often his comments entertain us with his unique perspective. Nothing is sweeter than hearing him tell me every night before he goes to bed, “Love you.”

•Despite his motor delays and language difficulties, Alex’s phenomenal self-taught abilities to read and use the computer have helped him to learn and entertain himself through the years. In addition, the Internet has provided a means for me to connect with other parents of children with autism as well as to easily research ways to help Alex get better. While autism tends to isolate, the Internet connects us with people around the world, as I’ve discovered more recently by writing this blog. I’m thankful to all those who have supported me in writing “One Autism Mom’s Notes”; I truly appreciate the encouragement.

•The expertise and understanding of special professionals who have worked with Alex have helped him tremendously. His wonderful doctor has worked with us, often using somewhat unconventional approaches to make Alex healthier, and his pediatric dentists along with their kind hygienists not only have kept his teeth healthy but also have made him enjoy going for regular visits. His occupational therapist and private speech therapist helped him overcome early developmental delays with their patience and encouragement, and his current music therapist does a fantastic job of improving Alex’s language and social skills. Moreover, I like that he calls Alex “Dude” and “Big Guy”; he is exactly the right person to work with Alex at this point in his development.

•Music—whether it be pop, rock, country, or his beloved jazz—always makes Alex happy and content. When Alex is happy and content, we are, too.

•I’ve been told that God never gives us more than we can handle, but I’ve wondered at times if God overestimated me when He gave me a child with autism. Nonetheless, through the trials and the triumphs, He’s walked with us and guided our paths. Through it all, I’ve learned to trust God and developed a faith I never would have, had it not been for the testing. As Pastor Joel Osteen often says, “God has you in the palm of His hand,” which reminds me that I’m always in a good place, even when things around me seem to be difficult.

•Along with my faith, my greatest blessing in life has been my loved ones—the family and friends who have supported us, prayed for us, sympathized with us, and rejoiced with us. Although they didn’t always know exactly what our life entailed, we felt their love, which gave us strength. I could not have asked for a better husband than Ed, who loves and supports me through everything, and more importantly, has become the perfect father for Alex with his compassion and patience. Finally, Alex is not only my beloved only child but also the one God sent to teach me the really important lessons of life: faith, hope, and love. I am truly blessed!

“Give thanks to the Lord, for He is good! His faithful love endures forever.” Psalm 136:1

Sunday, November 21, 2010

Tests of Patience

Most of the time, Alex is remarkably patient. Perhaps because he has had developmental delays, he doesn’t worry too much about waiting for things to happen, and he trusts that eventually they will occur. In fact, he’s often more patient than Ed and I are. For example, whenever we have to sit in a waiting room at the doctor or dentist, Alex never seems to mind passing the time until it’s his turn. While Ed and I check our watches, look around to see how many patients are ahead of us, and exchange looks during the wait, Alex smiles because he’s just happy to be there. Recently we took him to see American Idol winner Kris Allen in concert, and we were concerned that he would have difficulty sitting still through the opening act. As we sometimes do, we underestimated his willingness to wait for the main event. Alex’s good nature and patience were rewarded when he got to see Kris Allen, a singer whose music he enjoys. Last week, however, Alex encountered two situations that tested his patience, which meant our patience was tested, as well.

As I mentioned in my previous blog entry “Teaching Chores,” Alex has become very helpful at the grocery store, where he adeptly maneuvers the shopping cart through the aisles. On Tuesday, Ed took Alex with him to get groceries, and Alex happily pushed the cart while they shopped. Unfortunately, the store was quite crowded, and all of the checkout lines were very long. After waiting for several minutes in line, they were nearly to the cash register when the computer stopped working. The cashier tried to reboot the computer a few times but was unsuccessful, which meant that all the people waiting in her line now had to go to the end of another line. As Ed told me, most people were grumbling about having to wait already and then were even more annoyed to have their wait extended due to technical difficulties. However, Alex remained good natured, smiling all the while he waited. Even as they moved to another line, Alex seemed unfazed by the delay. However, after having been in line for about a half hour total, Alex suddenly informed Ed, “I don’t want to wait any longer.” Apparently, Alex’s patience does have limits. Uncertain as to whether Alex might have a meltdown, Ed took the wise course, guiding Alex and the cart out of the checkout line, putting the cart aside, and taking him out of the store. Fortunately, Ed’s quick movement eased Alex’s upset about having to wait, and a potentially bad situation was avoided in public. Probably many people waiting in those checkout lines felt the same frustration that Alex did; he could only be pleasant for so long before knowing that he’d had enough. At least he calmly verbalized his concerns instead of physically showing his irritation over the situation.

Last weekend, Alex decided that he wanted to get an electronic toy that would alter his voice. He’s been reading about puberty and how boys’ voices change, which is likely behind his interest in this voice changer toy. After searching online at Amazon, he found one that he thought was wonderful because it had four voices: robot, old man, boy, and kid. He was really only interested in the boy and kid voices, and he thought this device was a bargain at $9.99. I helped him order the voice changer with a gift card he had saved, and now he had another wait on his hands. The predicted delivery date was between Thursday and the following Monday. Of course, he wanted me to track the package several times a day to see where his voice changer was. Unfortunately, the package was not shipped until Wednesday, so he had a few anxious days, wondering when they would ship it. Then, they set a shipping arrival date of Friday by 8 P.M., which meant that all he could think and talk about on Friday was the delivery of that package. As each hour passed, he became more agitated, waiting for the toy to arrive. However, the promised delivery date was inaccurate, and he was not pleased that he would have to wait at least another day once he realized that he would not be getting the voice changer on Friday. Ed and I were concerned that we’d have to watch him pace and mutter about the voice changer all weekend because we weren’t certain if the shipping company delivered on Saturday. All three of us were running out of patience, heightened by Alex’s anxiety because he had been certain that he would receive the voice changer by Friday, as the shipping company had promised. Thankfully, the package finally arrived on Saturday morning. I’m not certain that any of the three of us would have had the patience to deal with Alex’s frustration had it not arrived then. Although we’re pleased that Alex is patient most of the time, his recent indications that his patience does, indeed, have limits reveals that he is making progress and may be more typical than we think. Perhaps he's just learned that the line from the Tom Petty song is true: "The waiting is the hardest part."

“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

Wednesday, November 17, 2010

Teaching Chores

As parents, one of the most valuable things that we teach our children is how to do chores around the house. As a teacher, I’m surprised by the number of students who claim that they don’t know how to do basic tasks because they don’t have to do any chores around the house. Often they’ll tell me that they don’t have to do anything at home because their family has a cleaning woman who does most of the work for them. While having hired help clean the house is an asset to working women, I wonder how those children will learn to clean, do laundry, and other basic skills, should they ever have to do so. With Alex, teaching him household chores has been a chore in itself at times because his dyspraxia, or poor motor planning skills, combined with his weak fine motor skills makes many tasks more difficult for him. In addition, when he has been temperamental, we did not want to push him to do things that might heighten his frustration and lead to his hurling things in anger. Lately, however, he has been more willing and able to do some simple chores around the house, even though he still requires some supervision and instruction from us.

Generally, Ed is much better at teaching Alex how to do chores than I am. My perfectionist nature makes me want tasks done the way I want them done, but I know that Alex needs to learn how to do things his way. On the other hand, Ed’s more laid-back personality rolls better with objects being placed near their actual targets. For example, Ed taught Alex how to set the table this summer, and so long as the silverware was near the plates, it didn’t matter to him that the fork should be on the left. Of course, in the scheme of things, the placement of the table setting really didn’t matter since we weren’t throwing a formal dinner party. Moreover, the pride Alex took in setting the table all by himself was much more important than how the table looked once he was done. With repeated practice, Alex became much better at setting the table, and now he places everything pretty much where it belongs. Ed has also recently involved Alex with the weekly taking of the garbage and recycling bins to the curb. Patiently, Ed helps Alex move the bins from the garage to where they will be emptied by the street department. Watching Alex carry the recycling bins or pull the garbage can on wheels is heartwarming because he has a big smile on his face and seems proud to be doing this job. I doubt that most teenagers are pleased to be reminded that it’s time to take out the trash, yet Alex is not only willing but eager to do it for us. In addition, Ed has worked with Alex on how to vacuum; considering that Alex used to be terrified of the vacuum cleaner, this is a sign of great progress on his part. Perhaps the most helpful task Alex has learned recently is how to push the cart when grocery shopping. For someone who often appears oblivious to his surroundings, he does an excellent job of moving the cart smoothly and safely through the store aisles with minimal guidance. Moreover, like other tasks we’ve asked him to do, he seems to think this is fun, happily obliging us when we ask him to do it and smiling all the while he pushes the cart through the store.

In teaching Alex basic tasks, we always have to remember that he learns better by seeing than by hearing. When we give him verbal directions, he seems at times to have trouble processing what we want him to do. For instance, when I have him help me sort laundry to be washed, he has difficulty keeping track of which baskets are for darks, lights, and whites. I could tell him repeatedly which basket was which and identify each laundry item as dark, light, or white, but he gets confused about where to place them. Therefore, I have learned to point to the proper basket as I tell him what category the item he is holding belongs to, and he can sort the clothes and towels with the added visual cue. Similarly, he often has trouble putting things away because he doesn’t process the verbal directions well about where things belong. To illustrate, his sunglasses are kept in a basket on top of our kitchen microwave, and yet he puts them instead on the kitchen table or the counter—in the vicinity, but not in the actual spot. He can process they go on a surface in the kitchen, but he can’t put them in the exact spot without several cues. Similarly, putting away his toys, games, and books requires a step-by-step process to get them to their assigned places, such as: upstairs, in Alex’s room, in the closet, in the blue basket. If these steps are not specified for him one at a time, his belongings may wind up at the top of the stairs, on the floor of his room, or with the closet door open and the object sitting in front of the closet. I truly believe that he’s not trying to be difficult about putting away his things; he really can’t understand the process unless we divide it into more manageable parts. Nonetheless, we are proud of the progress he has made at learning to do chores around the house, and we’re even prouder that he does what work he can with such a positive attitude and a pride in himself for being able to do these tasks.

“So I saw that there is nothing better for people than to be happy in their work. That is why we are here!” Ecclesiastes 3:22

Sunday, November 14, 2010

Time Change

As usual, last week’s time change from Daylight Savings Time to Standard Time adversely affected Alex a bit. When he was younger, he often had trouble adjusting his sleep for a few days when the clocks changed. Now, his sleep patterns don’t seem to vary, but some subtle mood changes suggest that his circadian rhythms have been disturbed by the one-hour difference. Although he knows how to change every clock in the house and enjoys turning them ahead or back an hour as needed, he requires a few days to adjust. This past week, he has been disgruntled at times, muttering his concerns. Since he is usually good-natured and congenial, this change in personality indicates that something has disrupted his system. Whenever he is in a grouchy mood, we take the advice given in Kenny Rogers’ country song “The Gambler”: “Know when to hold ‘em, know when to fold ‘em, know when to walk away, and know when to run.” To explain, sometimes we reassure Alex that his fears are unfounded, or we distract him by talking about something other than his obsessions, or we just ignore him, or occasionally, we get out of his way because he’s likely to have a meltdown.

Currently, Alex seems to have three primary preoccupations. First, he’s very concerned about when his doctor will retire. Since she has been his doctor for more than a dozen years and has been very good to him, he has a bond with her that he worries will end soon. He knows that she’s about the same age as my parents, both of whom are retired, and he assumes that she will also retire shortly, even though she has indicated that she has no imminent plans to do so. Despite our telling Alex repeatedly that she’s not planning to retire yet, he still frets about her and keeps asking when she will retire. I think Ed was finally able to ease Alex’s anxiety about that issue a few days ago when he told Alex that after his doctor retires, he can go to the same doctor Ed does. Of course, Alex wanted to know right away how old Ed’s doctor was; I guess he wasn’t too eager to go to someone else who might be planning to retire shortly. This interest in ages has also affected his current reading material as he has been researching child development. He has been selecting books from the library about babies, then preschoolers, followed by elementary-aged children, and now he is reading books about adolescents. I’m not certain how much understanding Alex has of his own development as a child because of his delays, and I wonder if he’s trying to recapture those days that may have been confusing to him. In addition, whenever he sees children on television, in books, or out in public, he asks us how old we think they are. As I had mentioned in my earlier blog “Rating,” Alex needs to quantify everybody by statistics, age being one of the most important to him. With the holiday season approaching and all the commercials and ads for toys depicting children, we hope that Alex overcomes this current obsession with little kids and how old they might be.

Besides potential retirements and little kids, Alex has current concerns about his memory. Even though he seems to have a photographic memory and has memorized many sequences of numbers, such as dozens of prime numbers and hundreds of digits of pi, he worries that he will forget something. Again, I suspect that he’s trying to remember his childhood. Fortunately, looking at photographs of himself at younger ages seems to soothe his anxiety. Another issue that he has recently raised is that he is certain that he erased data he had stored on his graphing calculator and worries that he’ll never be able to regain those lost numbers. Despite our reassurances, the thought of losing information makes Alex extremely agitated and upset. In addition, he worries that his memory isn’t what it once was, much as an elderly person might; however, Alex isn’t even nineteen yet. He has repeatedly asked us if he has a good memory, and we have been able to give him several examples—including the pi digits—that prove his memory is not just good, but phenomenal. The other day, he decided to take a new approach to this question, comparing himself to his two-year-old cousin and asking if he had a better memory than Casey. He worries that Casey won’t remember his early childhood because Alex can’t remember much about his own life before the age of four. I suppose he thought that comparing himself to his little cousin would be an easy way to make sure that he has the better memory. Plus, he likes that he knows exactly how old Casey is, which comforts him. Now, if he starts asking when Casey will retire, then we’ll have another issue on our hands…

“Yet God has made everything beautiful in its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.” Ecclesiastes 3:11

Wednesday, November 10, 2010

Voices

One of my favorite college professors once remarked that sometimes good intentions are not enough. Last week’s Communication Shutdown, which encouraged people not to use Twitter or Facebook for one day, was an example of how good intentions may not always be enough. Sponsored by several autism groups around the world, including the National Autism Association, the idea behind this social network blackout day was to make people realize how difficult communication is for those with autism. Moreover, two goals of this effort were to raise funds and to increase awareness for autism, both of which I heartily applaud and greatly appreciate. However, I read several comments and blogs from adults on the autism spectrum who noted that refraining from using online communication posed a significant hardship because the Internet allows them to socialize comfortably. Having raised a child with autism for nearly nineteen years, I believe that silence is not the answer when it comes to making people aware of the challenges autism presents. Rather, we need to shout from the rooftops how this autism epidemic has gone from 1 in 10,000 children to 1 in 91 children in a reasonably short period of time, and yet significant progress is not being made as to how to help these children. Limiting access on the Internet no more makes one aware of what it is like to struggle with the communication issues autism presents than driving a car fast makes one a NASCAR driver. Consequently, I opted not to participate in Communication Shutdown Day and continued to keep contact with my Facebook friends, several of whom are fellow autism moms.

As a parent of a special needs child, when I have read about disability awareness activities at schools, I have found them condescending and even offensive. Often the newspaper depicts healthy, typical teenagers riding in wheelchairs, having their eyes blindfolded, and/or wearing headphones to simulate mobility issues, blindness, and hearing impairment. Usually, the teenagers participating in these activities are smiling and laughing, seeing the experience as fun. However, having a disability is neither fun nor funny. Certainly, many individuals with disabilities learn to overcome the issues that make their lives challenging and often do so with positive attitudes. Nonetheless, pretending to have special needs for a few hours does not make one truly aware of what living with a disability entails, nor does it create empathy toward students who are different, in my opinion. If schools and organizations really want to make students aware and sympathetic toward those with disabilities, they should instead invite speakers to talk with the students about what life with a disability is truly like. For example, they should know that their sharpening pencils and erasing errors on paper sound much louder to a fellow student with sensory issues; perhaps fingernails scratched on a chalkboard would make them appreciate how this feels. Similarly, the blinking of fluorescent lights may be imperceptible to them, but for a child with autism, the flashing may be like that of a strobe light, complete with a buzzing noise. I could tell of how I watched Alex as a preschooler desperately trying to tell me something but was unable to find the words, his mouth open in a soundless cry as his eyes and mine filled with tears of helplessness. Of course, riding around in a wheelchair one doesn’t really need probably appeals more to most teens than any of my suggestions would.

Certainly we need to give those with autism a voice. Temple Grandin and other adults with autism who have shared their experiences have provided valuable resources so that others can understand how these unique minds function. We feel blessed that Alex, unlike many children with autism, can verbalize what he’s thinking and feeling so that we have a glimpse of what is going on in his mind. Other children with autism cannot tell others when they are scared, in pain, or angry; only their cries can suggest their distress. Until our children with autism can express their needs, we parents must advocate for them, to be their voices until they can speak. The Internet provides the perfect vehicle to share our voices, to tell others what life with autism is and is not. Until Alex can tell his own story—and someday I believe he will—we will keep telling it for him so that others can understand the challenges he has faced and the triumphs he has experienced as he has overcome the obstacles autism put in his path.

“Listen to my voice in the morning, Lord. Each morning I bring my requests to you and wait expectantly.” Psalm 5:3

Sunday, November 7, 2010

Voting

Last week, Alex marked another milestone by participating in his first political election. Although he was old enough to vote in the Indiana state primary election in May, I had not assembled his paperwork in time for him to vote then. In Indiana, voters are required to provide official photo identification documents before voting to prevent voter fraud. Since Alex doesn’t have a driver’s license, we needed to get him an official state identification card instead. As I described in my earlier blog entry “Transitions,” this experience at the Bureau of Motor Vehicles in June went much more smoothly than we would have anticipated, primarily because the woman who worked with Alex was amazingly patient and understanding and because Alex was remarkably cooperative. In addition, I had spent time online beforehand, making sure we had all the required paperwork to prove that Alex was neither a terrorist nor an identity thief: birth certificate and Social Security card to verify his identity, along with a doctor’s bill and a bank statement reporting the value of his stocks to confirm his address. The only difficulty in getting the official state identification card was keeping him from smiling and showing his teeth—as required by law—in the photograph they took. Consequently, his photograph, like most people’s driver’s license pictures, is not terribly flattering. In fact, he looks somewhat like a thug. Nonetheless, he now has the identification needed to vote, and we also had him register to vote while we were at the BMV.

After receiving Alex’s voter registration card in the mail, we then needed to apply for an absentee ballot. Again, information available online made this task much simpler. Ed and I were uncertain how Alex would deal with voting in our regular polling place and decided that he would handle voting at home much better because he could take his time making his choices and not be distracted by other people and strange surroundings. Since disability is one of the valid reasons for requesting an absentee ballot, he used this option. After submitting the form to request an absentee ballot, a few weeks later he received his official ballot along with instructions and the envelope to mail it. Unlike many people who take voting for granted or simply choose not to participate in elections, Alex was excited about this opportunity to exercise his right as an adult and carefully considered his choices before submitting his ballot. In addition, Alex follows the news, and through his study of American history, he has a good grasp of the political process. Even though he doesn’t pay taxes other than sales tax, he strongly supports candidates who share his belief in the need for lower taxes. Because he values money and is a good shopper who looks for the best deal, his concern for saving money is really not surprising. In addition, Alex spends a great deal of time listening to conversations that Ed and I have about politics and likely has formed opinions based upon what he’s heard us discussing that influenced his decisions. With great seriousness of purpose, Alex made his choices, mailed his ballot, and became part of the American electorate.

Eagerly anticipating Election Day last week, Alex spent the entire evening watching the election results on the news stations and waited to see how his candidates ranked. As though he were viewing an exciting sports event, he had a contented grin and would occasionally stand up and clap while he watched the results. Because most of his candidates—local, state, and national—fared well, he felt proud to have supported these successful candidates. Just as Alex felt pride in casting his ballot, we felt pride that he took his responsibility seriously and was actively engaged in the election process. Moreover, we felt grateful that despite autism’s attempts to silence Alex, he was able to make his voice heard through his vote.

“Now He is far above any ruler or authority or power or leader or anything else—not only in this world but also in the world to come.” Ephesians 1:21

Wednesday, November 3, 2010

Hiccups

During the last few weeks of my pregnancy with Alex, he had hiccups every day about the same time mid-morning and around ten o’clock at night. The first few times I experienced these subtle yet rhythmic movements, they startled me. Once I realized the source of the little ripples in my abdomen was simply Alex’s diaphragm in spasms, these twice-daily occurrences were something I learned to anticipate, and I would find myself waiting for the next session to happen. After Alex was born, he continued his hiccups schedule of mid-morning and late evening, and again I found myself watching and waiting for the next time the hiccups would occur. Over time, the daily hiccups disappeared, no longer part of a regular pattern. When Alex was older, we would give him a spoonful of sugar to make his hiccups disappear. As with anything out of the ordinary, he likes to know that there is a solution to the problem, and with hiccups, he knew to come ask for some sugar. Rarely, he would need a second dose of sugar to remedy his hiccups, but they always went away fairly quickly.

During Alex’s difficult adolescent years, he had meltdowns nearly every day and sometimes more than once a day. Like the hiccups he had shortly before and after his birth, we learned to anticipate these uprisings and waited for them to erupt. Over time, with maturation and some tweaking of his nutritional supplements, Alex’s meltdowns gradually became less prevalent, much to our relief. Things that once set him off, such as people coughing or the cable television going out, no longer would send him into tailspin mode. Even when he did become agitated, we could usually talk him down from his anxious state and prevent the anger and upset from turning into agitation and aggression. (As Ed and I always rate a “good” meltdown: “Nothing got broken, nobody got hurt.”) After going for several months without any real meltdowns, we had hoped that maybe Alex had finally and completely outgrown this stage. Recently, Ed and I compared the scars on our hands, remnants of where angry Alex clawed us with his own hands, and we noted that the marks remind us how thankful we are to have overcome those difficult days. My parents have again offered to stay with Alex as they did when he was little so that Ed and I could go out to dinner alone, something we haven’t done in many years because at least one of us needed to be with Alex in case he became agitated. With each month that passed without any incidents, we were enjoying a life of relative normalcy, and we felt blessed for this respite from the most difficult aspect of Alex’s autism.

Like those hiccups, however, the anxiety arises when we often least expect it. Last week, after months without any meltdowns, Alex became upset and threw a huge fit, complete with physical aggression. Ranting for no apparent reason about how he never wanted to use his graphing calculator again, he began hitting and clawing us to make his point, despite our reassurances and a dose of the sedative Ativan. He seemed to calm down a little, but then he began yelling and striking again, this time with a crazed look in his eyes and spitting at us to make his point, as well. After two more doses of Ativan, he finally settled down and returned to his gentle self, sleepy from the sedative and the meltdown. After he fell asleep, Ed and I did our traditional post-meltdown de-briefing, trying to figure out what had set off the fit and if we could have done anything better in handling it. Convinced that we had dealt with him as well as could be expected, we began thinking about what was different that might have agitated him. That evening, we had gone to a new restaurant, and we began analyzing what Alex had eaten that might have been a trigger for his behavior. We concluded that the potatoes he’d eaten likely had wheat flour in the sauce, and since Alex has been on a gluten-free diet for more than ten years, his system doesn’t likely tolerate glutens well. Although we were somewhat shaken by the experience, we were relieved that he did settle down, we had worked together to overcome the behavior, and we probably had identified the source of the problem through our detective work. Since we suspect a dietary infraction was the culprit, our commitment to keeping his diet gluten-free remains strong. Alex’s meltdown last week also made us appreciate how much his behavior has improved over the past several months because this was a rare event instead of a daily one. Nonetheless, while we enjoy the good behavior he exhibits the majority of the time, we stand on guard, waiting for those possible hiccups in life that challenge us and keep us praying for a total healing of Alex.

“From six calamities He will rescue you; in seven no harm will befall you." Job 5:19

Sunday, October 31, 2010

Halloween

Last weekend, we took Alex to a local orchard to pick out his Halloween pumpkin, which is an annual ritual he anticipates every October. For many years, we took him to Keel’s Country Corner, a nearby pumpkin farm that closed a few years ago. Although the idea of choosing a pumpkin doesn’t seem to excite Alex as much as it did when he was younger, he still enjoys the ride to the outskirts of town and the chance to select from a variety of pumpkins the one that will be his. While his lack of dexterity prevents him from carving a pumpkin, he does like decorating one. Several years ago, we found a kit that contains colored translucent pegs, similar to those found in a Lite Brite set, that are placed in the pumpkin to form a face, along with a small flashlight to illuminate them from the inside. Much safer than knives and candles, this is a terrific option for him. Although I have to scoop the inside of the pumpkin and poke the holes, Alex can put in the pegs to decorate the pumpkin himself.

Like most kids, Alex looks forward to Halloween, and when he was younger, he liked dressing up in costumes and going trick or treating. Of course, his difficulties in saying his r’s made his request sound like, “Twick or Tweat,” and we had to explain to him that people's opening their doors to him did not mean that he was invited to come into their homes. He would keep reminding himself, “Don’t go in people’s houses!” as we walked along. Because of his restricted gluten-free and dairy-free diet, he wasn’t able to eat most of the goodies he acquired in his treat container, but the fun for him focused upon dressing up and ringing people’s doorbells. Beginning in early October, Alex and I would discuss what he wanted to be for Halloween, and then I would start working on the costume he’d requested. Where we live in Northwest Indiana, we must always include warm clothing as part of the outfit since it could easily snow at the end of October. I learned quickly how to incorporate sweatshirts and sweatpants in various colors as part of his costumes, or I made costumes that were roomy enough to accommodate sweats underneath them. In addition, we tried to come up with hats or headpieces as part of the costume that would also keep his head warm and dry in damp and cold weather. Because of his sensory issues, Alex would never wear a mask of any kind; therefore, we had to make the costumes definite enough that he didn’t need anything on his face to tell who he was supposed to be. For his first Halloween when he was just a few months old, my mom found a baby devil costume with a red tail, horns headpiece, and bow tie. He wore those accessories with red fleece footed pajamas for comfort and warmth. The next year, I made him a costume out of a white sweatshirt and sweatpants, some white, purple, and gold material, and a blue feather to transform him into Aladdin as the prince, from the video he’d watched over and over. I was particularly pleased with how the turban turned out and even happier that he was willing to wear it. The next year, I made him a Bugs Bunny costume out of gray sweats but had trouble getting the ears to stand upright. Alex liked the costume, though, but he didn’t like wearing the white knit gloves that were designed to look like Bugs but also to keep his hands warm. The next year, he dressed like Raggedy Andy, complete with the plaid shirt, navy pants with buttons, red and white striped socks, and the red yarn hair I attached to a sailor cap. After seeing a clown at the county fair the following year, he wanted me to make him a clown suit; out of brightly colored fabric I fashioned a loose tunic and baggy pants that allowed sweats underneath them. He wasn’t too thrilled about the crazy blue curly wig to go with it, so we left that at home. The next year, I didn’t have to make him a costume because he found an old one my mom had made of a pumpkin, which he thought was great. With a green sweatshirt and sweatpants underneath the orange pumpkin, he was ready to go. For his preschool year when he was into reading Dr. Seuss, I found a red and white striped felt hat that made him a perfect Cat in the Hat. With black sweats and a big red bow I made, he created much less mischief than the Cat ever did. The next Halloween, I found a fabric Reese’s peanut butter cup candy wrapper that made a tunic with a few simple seams to be worn over sweats. Of course, we gave out Reese’s cups that year in keeping with the theme.

As Alex got older, he requested costumes that required less sewing on my part. One year, he wanted to go as his favorite NASCAR driver, Mark Martin, and we found him a long-sleeved racing t-shirt and a Ford Racing hat to top off—of course—sweatpants. Another year, he wanted to go as Chicago Bears football player Brian Urlacher, which only required finding him a number 54 jersey to go with navy sweats. The next year, he decided that he’d like to be a doctor, so I thought that making surgical scrubs would be easy, but I was wrong. After struggling with the neck of the shirt, I wished I’d simply bought him scrubs instead. With his stethoscope around his neck, Alex looked really good, which made the effort worthwhile. His final trick-or-treating costume was literary character Harry Potter. After putting him in a dress shirt and pants, necktie, and my college graduation black gown, he was willing to wear Harry’s style of glasses to look the part perfectly. Out of all of Alex’s Halloween costumes, his favorite was no surprise to us; he liked the calculator costume I made out of felt when he was nine because he loves math. In many ways, he is a calculator with his mathematical skills, so this costume probably represented him best. What pleases me most, however, is that whenever Alex thinks back on the Halloween nights of his childhood, he tells in an animated way about the costumes he wore, which brings a smile to his face and to ours.

“The king of Israel said to Jehoshaphat, ‘As we go into battle, I will disguise myself so no one will recognize me, but you will wear your royal robes.’ So the king of Israel disguised himself, and they went into battle.” I Kings 22:30

Wednesday, October 27, 2010

Funny Remarks

As I mentioned in an earlier blog post “Comedian,” Alex has a surprisingly good sense of humor for a person with autism. While he likes to make people laugh by saying things that he knows are funny, he often makes us laugh by saying things that are unintentionally amusing. Part of what makes his comments entertaining is that he sees the world in a different way than most people do. For example, one time when he was little, he was being bothered by a fly on our back porch and decided to go inside to get away from the pest and the noise it was making. On his way in the house, he grumbled in disgust, “It’s too buzzy out here!” His description was not only onomatopoetic, but it was also funny to us. Similarly, when he was a little older, he was riding in the back seat of the car as I was driving, and he began complaining about a noise he heard as we backed out of the driveway. Because he was just muttering at first, I ignored his complaints until he became quite animated and yelled like a grouchy old man, “It’s getting really loud back here!” While I found his reaction amusing, I took his aggravated tone seriously, pulled back into our driveway, and discovered that the back wheel was coming loose from the axle. Alex’s irritation by noises alerted me to danger, but it also made me laugh from what he said to get my attention.

When Alex was a baby, I used to sing to him, as many mothers do with their babies. Unfortunately, I cannot carry a tune, and Alex was honest enough to let me know what he thought about my lack of singing ability once he was able to say a few words. One day when I was serenading him, he lifted his hand to my lips, shook his head, and said, “Mommy no sing!” To make sure I’d understood him correctly, I asked him if he liked my singing. He shook his head and told me most definitely, “No!” The earnestness in his face, combined with his comment and attempt to silence me with his hand, struck me as funny because it was true: Mommy no sing! (As the old saying goes, “Out of the mouths of babes.”) When he was a little older, he once again took on the role of being my critic. Lying on the couch feeling lousy with flu, I noticed preschooler Alex examining me with a concerned expression on his face. He told me, “Mommy doesn’t look good.” Pleased that he was showing sympathy for me in my illness, I told him that I didn’t look good because I didn’t feel good. He thought about that for a minute and studied my face a bit more. Then he had an epiphany: “How about some lipstick?” I guess he thought if I put on some makeup and looked better, I might feel better, too. Actually, he made me feel better because his comment made me laugh out loud—the medicine I really needed, even more than lipstick.

In addition to critiquing me, Alex has also made some amusing comments about his own appearance. While he generally doesn’t worry too much about how he looks, he does seem to care about his hair, combing it and letting me know when he thinks he needs a haircut. When his hair gets to be what he deems is too long, often because his cowlick begins sticking out, he’ll inform me that he has “crazy hair.” Revealing his scientific mind, Alex will tell us—in his inimitable way— when his hair is sweaty from running around playing that he has “condensation hair.” Although Ed has escaped having Alex make fun of his appearance and singing, he has been under Alex’s humorous scrutiny for the way he talks. Growing up in Indiana, Alex has developed a Midwestern accent, despite being exposed to my somewhat Southern drawl and Ed’s way of speaking, learned from his youth in Brooklyn, but less obvious over time spent away from New York. Fortunately for me, Alex thinks I talk normally, but he enjoys making fun of the way Ed says certain words. He’ll teasingly mock Ed for saying “dunky” for donkey, “maynaze” for mayonnaise, “alahm” for alarm, and “farin” for foreign. He can imitate Ed’s New York accent to a tee, which makes me laugh. I especially enjoy when he does this because usually Ed and Alex gang up on me and find it terribly amusing to make fun of me. As Ed explains to me, his teasing is simply a way of showing he loves me. I’m pretty gullible, but I like the explanation anyway. I suppose that Alex’s amusing comments about us, then, could be considered his way of showing love for us. If nothing else, he keeps us entertained with his funny remarks and his unique perspective on life.

“He will once again fill your mouth with laughter and your lips with shouts of joy.” Job 8:21

Sunday, October 24, 2010

Fears Relieved

One of my favorite lines from the old hymn “Amazing Grace” is in the second verse: “And grace my fears relieved.” So many times through the years I have worried about Alex, only to have my fears relieved. For example, when Alex was a baby, I noticed that he had an indentation in his breastbone that I pointed out to his pediatrician. The doctor diagnosed this condition as pectus excavatum, or funnel chest, and told us that the dip in Alex’s chest was probably more of a cosmetic issue than a medical one. However, he went on to tell us that if Alex developed breathing problems from having the breastbone pressing on his lungs and constricting them, he would need surgery. Apparently this surgery is “rather grueling,” as the pediatrician explained, because it involves restructuring of the breastbone. As Alex grew, I would watch his chest rise and fall and listen for his breathing, praying that he would never need this surgery that scared me so. Thankfully, as Alex grew, the dip in his chest became much less noticeable, and his breathing was never compromised by the irregularity in his breastbone, which meant that my prayers were answered, and my fears were, indeed, relieved.

As Alex became older, I had new worries, primarily concerns about how he would react to situations that might involve pain for him. While all parents want to spare their children pain, with Alex we had to worry that he also might have a meltdown if he were hurt. The first time he needed a blood test, I was concerned that he would be upset by the needle, the pain, and the blood. However, Alex found the blood draw fascinating and never complained a bit. As the nurse commented, he handled the blood test better than many grown men she’d seen have blood tests. When Alex had his annual blood test a few months ago, a new nurse suggested that he look away, and I assured her that he preferred to watch the process. She was amazed by how unfazed he was by the test, but having seen him calmly sit through many blood tests, Ed and I were not surprised, just pleased that he was enthusiastic instead of upset. Similarly, I was concerned when Alex began losing his baby teeth, he would be unnerved about teeth falling out of his mouth and the blood that followed. I should have known that since money was involved—in the form of the Tooth Fairy’s reward—Alex thought this was fun. Later, as he lost his baby teeth and gained all of his permanent teeth, I fretted about what might happen when his wisdom teeth erupted. Having had all of my wisdom teeth removed by the age of sixteen due to crowding issues, I was concerned that Alex would need to have his wisdom teeth extracted, as well. His dentist told me that Alex could have them removed under general anesthesia, should that be necessary. Like the chest surgery, however, I prayed that Alex could avoid this ordeal. His dentist went on to reassure me, “We’re not going to worry about that, Mom, unless they’re a problem. Let’s assume that they’re not going to be a problem.” He was absolutely right; fortunately, Alex’s wisdom teeth have come in fine and have not required surgery to remove them.

One of my greatest fears concerning Alex was one I didn’t share with anyone for a long time. When I suspected something was amiss because of his language and toileting delays, I was terrified that social services would come and take him away from us. I thought that his failure to make progress might be attributed to negligence on my part, even though I knew I was moving heaven and earth to try and help him. I had read articles about children with developmental delays who were taken from their homes, and then the parents were found innocent when the error was realized regarding the real reason for the problems. Once I realized that my fear was unfounded, I was able to pursue therapies for Alex without a frantic feeling. Now that Alex is a young adult, I find myself again fighting fears about what the future will bring. While I rely on my faith, sometimes those nagging fears sneak up on me, and I have to remember all the prayers God has answered and know that He will protect Alex. As I fight my fears, the third verse of “Amazing Grace” offers me comfort about Alex’s future: “Through many dangers, toils, and snares, I have already come; ‘tis grace that brought me safe thus far, and grace will lead me home.”

“So don’t be anxious about tomorrow. God will take care of your tomorrow, too. Live one day at a time.” Matthew 6:34