Wednesday, December 28, 2011

Saving/Savoring

Last Christmas, we gave Alex several gifts we thought he would like, but once he opened them, he didn’t show much interest in them. Since he rarely offers suggestions about gifts he would like to have, we use our best judgment in selecting items we think he would enjoy, based upon his interests. However, we apparently don’t always hit the mark in our choices, or so we may think at the time. After he left these gifts untouched for a couple of weeks. I put them in a plastic storage bin in his bedroom, hoping eventually he’d discover them. After ignoring them for nearly a year, he finally started pulling these hidden treasures out of the storage bin and seemed to find them entertaining, studying the trivia cards in the Brainiac Box and Big Brain Academy game, reading The Old Farmer's Almanac for 2011, and writing on the Magna Doodle he’d received last Christmas. In addition, a gift that I thought would be a big hit with him, Loopz, an electronic game that makes musical sounds, finally received the positive response I’d anticipated when I bought it for him because he has really enjoyed playing with it the past few weeks.

Similarly, this Christmas, Alex didn’t seem terribly pleased with the various gifts I had tracked down for him in hopes of getting something that he would find engaging. After giving the new gifts a cursory look, he returned to the old and familiar, eschewing the new. Like parents whose small children favor the box over the special gift that came inside it, I felt disappointed and frankly a little hurt by his reaction. On the other hand, as Ed pointed out to me, perhaps in a few days or weeks or even months, he’ll discover these gifts—as he did the ones from last year—and suddenly be enthralled with them. I’m not anticipating that reaction any time soon, though. Yesterday, he brought one of his all-time favorite Christmas gifts, a rare one in that he had actually requested it, a graphing calculator he received about ten years ago. Through the years, this calculator has been one of his prized possessions. In fact, we even used it as a way to make him behave by threatening to take away his graphing calculator if he didn’t cooperate with us, and this worked like a charm. When he brought me the beloved calculator yesterday, he told me that he needed a new one because this one didn’t work. A bit surprised by how calmly he was handling the loss of one of his favorite gadgets, I tried to reassure him that maybe it just needed new batteries. Unfortunately, Alex’s assessment was accurate; the calculator was broken and needed to be replaced. He nicely asked me to find another one online and buy it for him, knowing that he had received money for Christmas. A quick online check revealed that our local K-Mart had one just like his old one in stock, and he was delighted when I brought home the replacement, unfazed by the loss of his old calculator. He spent most of the rest of the day, entering data in the new graphing calculator and studying the instruction manual. How I wish that I could solve all of his problems that quickly and easily!

The more I think about Alex’s reaction to his gifts the past two Christmases, the more I begin to suspect that he is overwhelmed by his gifts and doesn’t know how to react, other than to withdraw from them and seek out the comfort of the old and familiar. Like many with autism, he often prefers the predictable and the routine. He can only deal with the new gifts when he is ready, sometimes saving them until he feels comfortable. Once he discovers these gifts, he finally appreciates the thought behind them or at least realizes their value as fun ways to pass time. Moreover, a select few, like the graphing calculator, become gifts that he savors over time. With that in mind, I’ll leave out his gifts of Christmas 2011 for another week, and then I’ll put them in the storage bin in his room, waiting and hoping that eventually he’ll enjoy them.

“Let all that I am wait quietly before God, for my hope is in Him.” Psalm 62:5

Sunday, December 25, 2011

Stocking Stuffers

A few days ago, I finished up my Christmas shopping by purchasing stocking stuffers for Ed and Alex. To me, this task offers a fun challenge as I try to find clever and inexpensive gifts small enough to fit into their Christmas stockings that hang from our fireplace mantel. Since Alex doesn’t particularly like candy and can only eat foods that are gluten-free and casein-free (essentially free of wheat flour and milk products), most of the typical Christmas candies are not on his diet. I got him some snowman Peeps marshmallow candies and some Kraft marshmallows in the holiday shapes of pale green Christmas trees and pale red stars. He’s come to expect a copy of the new Farmer’s Almanac in his stocking every year, so I have one of those to tuck in the top, along with a pocket-sized puzzle book. In addition, the success of a multi-ink pen from last year led me to find two different (true colors and pastels) four-in-one ballpoint Bic pens. I have a feeling those may be among his favorite gifts this year, considering all the list writing he’s been doing lately. We shall see.

In the tradition of stocking stuffers, where a variety of small items are gathered together in one place, I thought I’d write about a few small topics and gather them together into one. Besides sharing the contents of Alex’s Christmas stocking, I wanted to share a link [Click here] to an online Business Week article whose title alone intrigued me: “Wal-Mart Joining Amazon to Promote Rage-Free Packaging.” Apparently these two major retailers, who happen to be among Alex’s favorites, have encouraged manufacturers to limit packaging that is not only wasteful but also causes a condition known as “wrap rage,” a frustration from trying to open the package. While “wrap rage” sounds like something only children with autism might experience because of their fine motor and sensory issues, apparently typical people suffer from this malady, as well. When Alex was younger, I often took his gifts out of the hard plastic shells before he ever saw them so that he could open them more easily; in addition, I would put batteries in his toys so that he didn’t have to wait for me to figure out how to open the childproof battery compartment. This year, I have decided to return to the good old days when Santa simply laid out Alex’s gifts beside the fireplace instead of wrapping them. Since he hasn’t been terribly patient lately, I figure that saves him a step before he can actually get to the gifts. Besides, that saves me from wrapping them, something he doesn’t seem to appreciate currently. I guess that’s my version of “rage-free packaging.” I have my fingers crossed that this works.

Another Christmas task besides not wrapping Alex’s gifts that I decided to forego this year was sending Christmas cards. When Alex was little, I was really good about taking the annual picture of him in front of the Christmas tree or the “stockings hung by the chimney with care,” but as he got older and less interested in having his picture taken, the novelty of that tradition faded. However, this year, I tried something new as I made a JibJab video with the three of us, and I think it turned out pretty amusing. [Click here for the video, which becomes our Christmas card this year.] My friends who have already seen the video have commented that telling Alex and me apart is tricky in the cartoon hats. Because his build is identical to Ed’s and some of his features are more Ed’s than mine, I don’t think of him as looking that much like me. However, dressed as elves (Alex’s nemesis, as I described in “Santa’s Spies” [Click here]), we clearly have a family resemblance. Making this video certainly beats trying to convince young adult Alex to stand still in front of the tree and smile. Plus, I don’t have to make a run to the post office when I’m done; sharing holiday greetings over the Internet certainly makes life easier.

And so, on this Christmas Day, I wish for everyone, but especially those families whose lives like ours have been touched by autism, peace, hope, and joy as we love these children and pray for their healing. May God’s greatest gift, His Son Jesus Christ, remind us how much He loves us.

“Suddenly, the angel was joined by a vast host of others—the armies of heaven—praising God and saying, ‘Glory to God in the highest heaven, and peace on earth to those with whom God is pleased.’” Luke 2:13-14

Wednesday, December 21, 2011

Twelve Days

With only a few days to go until Christmas, I'll admit that I don't have a single gift wrapped and I have yet to bake any cookies. In fact, I even have a few more gifts to buy. While I am usually very organized, somehow this year, I'm not as ready for the holidays as I'd like to be. Although I'm sure I'll pull things together in the next few days, I decided to recycle one of my blog posts from last year about some of Alex's favorite things in one of his favorite formats, the numbered list. In re-reading this list, I realize that despite the various changes he makes, in many ways Alex's interests, particularly when it comes to numbers and games stays the same. Among the gifts I need to wrap for him include a math calendar, an almanac, and a calculator, and I hope he finds the joy in these gifts that he has in previous years.


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

Sunday, December 18, 2011

Two Decades

On Friday, Alex turned twenty years old. While reaching this two-decade mark should be a cause for celebration, his recent issues with anxiety prompted Ed and me to keep his birthday as low key as possible. Of course, we have never made a big deal of his birthday for fear of overwhelming him (hence, no clowns or magicians), but this year we were especially careful to avoid anything that might agitate him. Carefully selecting a birthday card, wrapping paper, and gifts that were not likely to upset him, we hoped that he would be able to enjoy his special day. I even decided to forgo getting special number candles since he informed us the other day that he wished he were two years old again. I could picture him hurling the zero candle to pretend that he really was two instead; in fact, we decided against any candles on his birthday cake since fire and fiery temper didn’t seem to be a good mix. As far as birthdays go, this one ranked right up there with the one my mom had in her thirties when she had to pick up all the dog droppings in the yard because our dog had worms or my thirty-fifth birthday when I had a thyroid biopsy that involved having a needle stuck in my neck a dozen times to rule out cancer. Although Ed and I were disappointed that Alex’s apparently jangled nerves interfered with his ability to enjoy his birthday, I heard three songs on the radio that day that especially resonated with me and reaffirmed the depth of our love for him.

I’ve always loved the haunting beauty of the Beatles’ song “The Long and Winding Road,” and as I listened to it again on Alex’s birthday, some of its lyrics held special meaning for me, thinking about how we have striven to help Alex overcome autism that would isolate him from us and everyone else:

“Many times I’ve been alone, and many times I’ve cried. Anyway, you’ll never know the many ways I’ve tried. And still they lead me back to the long, winding road. You left me standing here a long, long time ago. Don’t leave me waiting here. Lead me to your door.”



Another one of my favorite songs is Garth Brooks’ version of Bob Dylan’s “To Make You Feel My Love,” which I also listened to on Alex’s birthday. Because of Alex’s sensory defensiveness, he never initiates physical affection, and I often wonder if he truly knows how much we love him. The lyrics of this song made me think again of how we would do anything to convey our unconditional love for Alex:

“There ain’t nothing that I wouldn’t do, go to the ends of the earth for you. Make you happy, make your dreams come true to make you feel my love.”



As Ed and I pull together in our concerns for Alex, we share a frustration of wondering whether there is something we should be doing, something we shouldn’t be doing, or whether we just need to ride out this current phase patiently. Since the latter is usually the best option, we reassure each other with faith that Alex will get better. In the meantime, I’m grateful for Ed’s love and support, and some of the lyrics of Blake Shelton’s new song, “God Gave Me You” express how thankful I feel knowing that I can always depend on him:

“But you stay right here beside me and watch as the storm blows through, and I need you. ‘Cause God gave me you for the ups and downs. God gave me you for the days of doubt. And for when I think I lost my way, there are no words here left to say; it’s true, God gave me you.”



While we wait for this current annoying phase to pass, we pray for patience and wisdom, and we pray for Alex’s healing so that he can enjoy being twenty more than he enjoyed turning twenty.

“All who have reached their twentieth birthday must give this sacred offering to the Lord.” Exodus 30:14

Wednesday, December 14, 2011

Avoiding Annoyance

One of my guilty pleasure pastimes is watching old reruns of the television series Sex and the City. In one episode Carrie wrote a column about “Secret Single Behaviors” after accidentally discovering that her boyfriend Aiden used Rogaine because his hair was thinning. Her own “SSB,” as she abbreviated it, was not talking for an hour after she came home, something Aiden needed to learn to respect. To use Carrie’s frequent catch phrase, “I couldn’t help but wonder…,” and I began thinking about what secret behaviors autism moms use to cope with the various aspects of our somewhat unusual lives. Some of these actions help us maintain a level of sanity, but most probably revolve around avoiding annoying our overly sensitive kids. As I catch myself doing some of these Secret Autism Mom Behaviors, or SAMB’s, I realize that most people with typical kids have no idea the things we do to keep harmony in our households. Therefore, I decided to share my secrets and reveal some of my SAMB’s to give a glimpse of a day in the life of one autism mom.

Since Alex, like many people with autism, relies upon routines (Think of Raymond in Rain Man insisting that the syrup must be on the table before the pancakes arrive.), we try to maintain a predictable schedule. Currently, he wants to eat lunch at noon and dinner at 5:00, and if food isn’t on the table by those set times, he’s likely to be agitated. To reassure him that things are remaining on schedule, we make sure to turn on the microwave before mealtimes so that he hears the oven running and knows we’re in the process of preparing a meal, keeping him calm. I’ve also learned not to set the table until the last minute because as soon as he hears plates and silverware clinking as they hit the table, like Pavlov’s dogs when the bell rang, Alex is ready to eat. Another one of Alex’s routines is list making. To avoid having our house become a cluttered mess of paper emblazoned with Alex’s scrawl, I must engage in a SAMB that Alex cannot know. Since he places value upon his written work, he would probably like to keep every list he’s ever made. To prevent him from becoming annoyed with my need for organization, I sneak his lists to a place where he can’t find them. If he doesn’t seem to miss them after about a week, I hide them in the recycling bin among the old newspapers. So far, he hasn’t caught on to my regular purging of his paperwork, so I’ve kept him from being annoyed with me about that.

To avoid disturbing Alex’s overly sensitive hearing, I’ve learned a few tricks so that he can’t hear what I’m doing. For example, I’m always concerned that my flushing the toilet early in the morning before I go to work might wake him and set him off. Therefore, I listen for the furnace, air conditioner, or humidifier to go on before I flush so that those mechanical noises can drown out the sound of running water. Another thing that bothers Alex currently is people talking on the phone. I’m not certain why this irritates him, but we never answer the phone and simply wait for the answering machine to pick up the call. If someone other than a telemarketer is trying to reach us, we sneak off to a phone where he can’t hear us to return the call. If we want to make phone calls, we do the same thing, hiding in the basement or lurking upstairs in our bedroom with the door closed. As far as Alex knows, we never use the phone, so he probably wonders why we even have one. Probably the most secret of my secret autism mom behaviors is coughing. Alex has a fit if anyone coughs, worried that they’re terribly sick and going to get laryngitis. Ed and I have learned that the only way any of us can get any sleep when one of us has a cold with a cough is to sleep downstairs where Alex can’t hear the coughing. Moreover, we have learned to cover accidental coughs by pretending to sneeze, moving chairs to make noises, etc. We are also pretty good at escaping to rooms where he can’t hear us cough. A recent cold that left me with a cough found me running to the basement, garage, front porch, or our bedroom, where I muffled my cough with a pillow. If all that sounds ridiculous, I must confess that sometimes when I’m driving alone in my car, I cough just because I can do it without fear of reproach. Perhaps that’s the oddest of my SAMB’s because I derive a strange sense of satisfaction from coughing uninhibitedly, not worried about any consequences. As I think about all the different ways we try to avoid annoying Alex, I pray that he will become more tolerant of others’ behavior so that we can relax and not worry that he will get upset over the small things in life. Cough, cough.

“God will judge us for everything we do, including every secret thing, whether good or bad.” Ecclesiastes 12:14

Sunday, December 11, 2011

Autism Articles

As I have mentioned in previous blog entries, I do quite a bit of autism research, always looking for something that might help Alex. Three recent online articles caught my attention with their interesting titles, and yet I found they raised more questions than they answered. The first article, “The Hidden Potential of Autistic Kids,” published in Scientific American, [Click here.] focuses upon the problems of accurately testing children with autism. The author notes, “Researchers have long considered the majority of those affected by autism to be mentally retarded. Although the numbers cited vary, they generally fall between 70-80 percent of the affected population.” The article goes on to explain that traditional intelligence testing involves social knowledge and verbal skills, two common weaknesses in people with autism. For example, the evaluator may ask the child what to do if he/she found a sealed, stamped, addressed envelope on the sidewalk; this requires some social knowledge to realize that one should put it in a mailbox. A language-based test question might be something like, “What do a pencil and a paintbrush have in common?” Analogies such as these are often difficult for children with autism to understand and explain. The author of the article, who has two younger brothers with autism, gives an example of a question used to evaluate her brother in which he was asked what was an appropriate question to ask someone whom he found out was getting married. His “failed” response: “What kind of cake are you having?” [Actually, I think that’s a very good answer!] Considering the obstacles autism poses, the author suggests that nonverbal testing, such as those that measure pattern recognition and logic, be used more often to measure more accurately the potential and skills of a person with autism. I totally agree with her point and wonder why nonverbal testing is NOT used more often. Why are children with autism tested in ways that they are bound to be unsuccessful?

Another article I read this week entitled “’Sensitive Santa’ Meets Kids With Autism,” which appeared on the ABC News website, [Click here.] describes how some malls around the U.S. are offering special times for families who have children with autism to shop. Understanding the sensory issues many of these children face, the organizers accommodate the special needs by dimming lights, lowering the volume of background music, and providing an understanding Santa for the children to visit. In addition, they offer an informational pamphlet for the families so that they can prepare the children ahead of time as to what to expect. The organizer of “Sensitive Santa” at one mall commented, “We will continue to do it because obviously there’s a huge demand.” While the thoughtfulness behind this kind gesture of allowing families with autism to enjoy Christmas shopping is wonderful, I wonder why no one has questioned why so many children today have autism, making these special events with “huge demand” necessary. Certainly autism awareness and acceptance of these children is commendable, but researchers need to work harder on finding treatment and cures so that “Sensitive Santa” days at the mall are not needed. When I was listening to my car radio the other day, I heard a report about how successful “Sensitive Santa” days have been around the country this holiday season. A psychologist being interviewed about Christmas shopping with children who have autism recommended giving them sunglasses and earplugs to wear to help them deal with sensory overload. In addition, she advised parents of children with autism to “plan ahead.” While her ideas were helpful, I found myself laughing out loud at how obvious this suggestion is because anyone who has a child with autism knows that our lives are constantly about planning ahead yet expecting the unexpected. Most autism parents could train the military on covert operations because we can get our kids out of a crowded public place in record time, should they have meltdowns. We learn those survival tactics early through experience.

The third article on my reading list this week entitled “Living Life With Autism: Has Anything Really Changed?” appeared on the Forbes website. [Click here.] This feature discussed the issue of children with autism reaching adulthood and the concerns regarding their employability. The statistics quoted in the article should startle people with how overwhelming the number of adults with autism needing services is likely to be. Currently, an estimated 1 to 1.5 million adults with autism live in the U.S. today, and the articles states that, “in the next decade alone, 500,000 children with autism will come of age.” The estimated cost of taking care of one person with autism is $3.2 million dollars over a lifetime. Moreover, the unemployment rate for adults with autism, based on 2009 data, is approximately 66%, but other statistics show that a better estimate is 80-85% of adults with autism are unemployed. In this article, however, an optimistic outlook indicates more job opportunities for adults with autism, citing three examples of places where the employees with autism have been successful in making greeting cards or testing software or farming. Certainly, these ideas are encouraging, but I question how many of the increasing number of people with autism could even do these jobs. Nonetheless, a spokesperson for Autism Speaks who is quoted in this article, Peter Bell, encourages parents who have children with autism that many job opportunities will be available, advising, “…the sky’s the limit. Always be open-minded. Things are changing.” Despite his positive spin on the job situation, I think the answer to the article title’s question is probably no, considering the unemployment figures given and the limited job resources available. On the other hand, the increasing number of people with autism has changed, yet not enough is being done to help these people get better so that they can work. At a cost of more than $3 million dollars per person, action had better be taken quickly to remedy this situation that goes beyond better testing, “Sensitive Santas,” and platitudes about how people with autism can do anything. Awareness and accommodation are good, but a concerted effort to find answers about curing autism must be pursued.

“You said, ‘Listen and I will speak! I have some questions for you, and you must answer them.’” Job 42:4

Wednesday, December 7, 2011

Special Symbols

As I put the ornaments on our Christmas tree over the weekend, I realized what an eclectic collection we have acquired during the twenty-three years of our marriage. Nearly all of our ornaments are gifts we have received from each other, family, or friends, and I have received a number of them as Christmas gifts from my students over the years. In addition, we have some remnants from my childhood Christmas trees—ornaments that have sentimental value, most of which came from the dime store. Our Christmas tree reflects our interests through the ornaments depicting various sports, our favorite NASCAR drivers and their cars, apples as a nod to our chosen profession of teaching, as well as several Scarlett O'Hara figurines from my favorite book, Gone With the Wind. The most precious ornaments, however, are the Hallmark Keepsakes that have pictures of Alex at various ages: decked out for preschool at 4, wearing a cowboy hat at 5, and raking leaves at 8, to name a few. Keeping watch over our tree is a brunette angel tree topper who wears her hair like I wear mine, so she seems like a kindred spirit. While other trees may be more beautiful than ours, I love that our Christmas tree represents our life and reminds us of the people who care about us.

After finishing decorating our tree, I began to think about what kinds of ornaments would best represent stages of Alex’s life and the people other than family and friends who have helped him. If I were putting together a special symbol tree for Alex, his ornaments would reflect the various therapies that have made him better.

To represent his beloved doctor, who supervised his special diet, nutritional supplements, chelation therapy, and cranial therapy, I would choose an apple to represent the good health she helped him maintain for more than ten years while he was under her care.


As a symbol of the developmental optometrist who helped Alex with using his eyes together better, improving his balance so that he could go up and down stairs easily and stop tipping his head to look at things, I would select a pair of glasses as a reminder of those Alex wore briefly while he did visual therapy.


An ABC ornament would serve as a reminder of his speech therapist, who worked with him to take all the written words he had learned from reading at an early age and put them into spoken language so that he could be understood instead of being frustrated because he couldn’t talk.


For her loving patience and creativity in helping Alex to use his hands more adeptly in fine motor tasks, a hand with a heart would represent Alex’s occupational therapist, who often convinced him to do tasks he didn’t like by promising to teach him French words, something he did enjoy.


A musical note would symbolize his music therapist, who not only somehow taught seemingly rhythm-impaired Alex how to clap on beat but also engaged him with country music and jazz that he knew Alex loved, improving his social skills and confidence along the way.


Most importantly, Alex’s Christmas tree would be a testimony to the healing God has given him, represented by the ornaments Faith, Hope, and Love. Although autism has presented obstacles, these spiritual gifts have blessed our lives and enabled us to find peace despite upset, joy despite frustration, and strength despite fear. Through the people God has brought across our path, Alex has made progress, giving us hope that he will continue to improve so that we can continue to celebrate just how far he’s come.

“And it will be like a sign on your hand and a symbol on your forehead that the Lord brought us out of Egypt with His mighty hand.” Exodus 13:16

Sunday, December 4, 2011

Santa's Spies

Why is it that kids are often on their worst behavior ahead of Christmas? Is it the excitement about the holidays? Are they affected by the shorter hours of daylight? Do they pick up on the stress of the adults in their lives who are busily trying to check off all the items on their too long to-do lists? Whatever the reason or reasons, I muster all the patience I have to deal with the changes I see every December in Alex and my seventh grade students. Children who have spent the entire year on Santa’s “Nice” list suddenly start acting like those on the “Naughty” list instead. For Alex, the hustle and bustle of the days leading up to Christmas are intensified by the anticipation of his birthday that falls nine days before the day we celebrate Jesus’s birthday. Knowing this, I always brace myself for the weeks between Thanksgiving and Christmas, waiting for Alex to misbehave.

When I was little, my mom used to threaten my siblings and me with elf warnings to make us behave ahead of Christmas. If we were acting up—usually bickering amongst ourselves—she would look toward a window and say, “I hope Santa’s elves weren’t looking in the window just now.” The concern that Santa might not leave us any presents was usually enough to make us straighten up right away—at least until we temporarily forgot about those nosy elves. Apparently this is an old mother’s tale because I know other kids who grew up like me, believing that Santa’s elves were Peeping Toms in December. Someone very enterprising has made an entire industry on this concept, selling an elf doll and an accompanying book, The Elf on the Shelf for thirty bucks. Instead of looking in the windows, this elf sits on a shelf (hence, the name of the book) in the family home, watching the children’s behavior and reporting back to Santa every night. I would think that kids with some cleverness and gumption would take that elf doll and hide it in a closet or toy box so that he couldn’t tattle on them and risk ruining their Christmas morning. Of course, if kids buy into the words of “Santa Claus Is Coming to Town,” they have to worry about the big man himself who “sees you when you’re sleeping” and “knows when you’re awake.” Moreover, “He knows when you’ve been bad or good, so be good for goodness sake!” Aside from the creepiness of making Santa sound like a stalker, these lyrics, like the elf warnings, remind children that they need to behave, lest risking Santa’s wrath.

When Alex was younger and believed in Santa Claus, I followed my mom’s example and reminded him of elves looking in windows any time he misbehaved in December. Since Alex loved the idea of Santa, we allowed him to believe in him much longer than most children do. The added bonus to his buying into this kindly fictitious character was that he believed that the elves were keeping an eye on him, and I took full advantage of his naiveté. Not surprisingly, Alex developed a dislike for all elves, not just Santa’s. He didn’t like the Keebler cookie elves, hiding a metal container we had with their picture on it under our couch. In addition, the Rice Krispies cereal elves, Snap, Crackle, and Pop, each earned persona non grata status in our house. Alex especially disliked a bowl that had these three elves depicted in it, and he would turn it over to hide their faces, saying, “DON’T LIKE ELVES!” I guess he saw them as intruders in our home, traitors who would tell Santa of any of his misdeeds. I’d hate to think what he might have done to the elf doll and book, had we owned The Elf on the Shelf; I bet they would have wound up hidden under the couch, hanging out with the Keebler elves. Even though Alex developed an aversion to elves, I miss those younger days when he believed in magical characters and wanted to be on Santa’s good side. We still have that bowl with the Rice Krispies elves; I wonder if it still might have some of that magic left in it yet…

“Be careful to obey all my commands, so that all will go well with you and your children after you, because you will be doing what is good and pleasing to the Lord your God.” Deuteronomy 12:28

Wednesday, November 30, 2011

Getting Christmas Presents

As I mentioned in my last blog post, buying gifts for Alex is sometimes a challenge. While I’m fortunate that we have Wal-Mart, Kmart, Target, Kohl’s, Penney’s, and Barnes and Noble in our town that offer a variety of items for shopping, I also do a lot of online shopping for him. When I can’t find items locally at the aforementioned stores, I often check their websites to see what I can get online. Both Kohl’s and Penney’s websites [www.kohls.com and www.jcp.com] offer a nice feature where the shopper can browse for gifts by the intended recipient and/or cost of gift. Besides these stores, I also shop a great deal online at Amazon [www.amazon.com], which is Alex’s favorite online store because of the wide variety of books, toys, games, and electronic gadgets they carry. In fact, I often suggest that Alex’s aunts and uncles get him Amazon gift cards because he has so much fun shopping for items online.

Since Alex has often had interests that were not typical of kids his age, I also have found specialty catalogs especially helpful in finding Christmas gifts for him. I have no connection with the following companies other than being a pleased customer, and I would highly recommend them to anyone looking for unique gifts for hard-to-buy-for children and teens.


Bits and Pieces offers a variety of puzzles, games, and interesting gadgets primarily for teens and adults. In addition, their website also provides the helpful feature of suggesting gifts for specified recipients and/or amounts to be spent. Their website is www.bitsandpieces.com.



Young Explorers carries a wide variety of interesting toys and games for children of all ages. They specialize in educational toys and games, many of which have won awards. Their website at www.youngexplorers.com organizes its content by age of recipient and by categories of items. Alex’s favorite gifts from this company often came from the Brainy Toys or Science/Nature/Math sections of the catalog.


Toys to Grow On, whose website is located at www.ttgo.com, also offers a nice variety of educational toys and games for all ages of children. Alex especially liked the items from the “Love to Learn” and “Science Discoveries” of this catalog.


Mindware, which bills itself as carrying “brainy toys for kids of all ages,” provides a terrific variety of educational and award-winning toys, games, gadgets, and books. Over the years, I have found various items for Alex in the “Science,” “Brainteasers and Puzzles,” “Games,” and “Great Gifts” sections of the catalog. Their catalog is not only informative, but it is also appealing with its layout and photography. Their website is located at www.mindware.com.


A catalog I received for the first time this year, Museum Tour, also offers a nice assortment of award-winning educational toys, games and books that are carried in museum stores throughout the United States. Their website is www.museumtour.com. For Alex, I was especially interested in the science-oriented gifts, particularly those dealing with biology, meteorology, and astronomy.

Even though trying to find gifts for Alex sometimes requires some creativity and searching on my part, I’m glad to have found some terrific stores whose catalogs and websites allow me to find Christmas gifts that are right up his alley. Not only has he enjoyed playing with the specialty gifts, but he has also learned from them, which is an added bonus.

“You should remember the words of the Lord Jesus: ‘It is more blessed to give than to receive.’” Acts 20:35

Sunday, November 27, 2011

Ghosts of Christmases Past

As the official Christmas shopping season has begun this Thanksgiving weekend, I find myself thankful that I have basically finished shopping for Alex. Buying gifts for him always proves to be somewhat of a challenge because he rarely asks for anything, and he is not good about giving suggestions. Nonetheless, I try to find things I think he would like. Sometimes, my ideas are right on target, and other times he looks at me as if to say, “Why would you think I would want that?” Interestingly, some of the gifts he has been less than enthusiastic about receiving at first later become favorites of his, which is gratifying. The other evening after he went to bed, I noticed an array of his belongings in the family room, where he had been spending time, and I realized that all of these items had been Christmas gifts from various years—Ghosts of Christmases Past, so to speak, that reveal his various interests.


One of these former Christmas gifts was one I’d gotten him last year, a retractable ballpoint pen with ten different colors of ink. I had seen one of my seventh grade students using a similar pen in class and asked her where she’d gotten it, thinking that Alex might like one, too. She told me that she’d gotten it at Claire’s Boutique, and I dug through all the hot pink pens to find a purple one I thought he’d find acceptable. While he didn’t seem very interested in the pen when he received it, he’s been using it quite a bit lately to write his assorted cryptic lists in multicolored ink.



Speaking of lists, another part of the Christmas Past menagerie included one of his all-time favorite books, I Love Lists! by Linda Schwartz. In fact, Alex loves this book so much that he’s now on a second copy of this paperback because the first one fell apart from being read and carried around so much. The book describes itself as: “More than 200 fun-filled lists for reading, science, math, geography, music, art, sports, and lots more!” Essentially, if Alex had asked someone to write the perfect book for him, this would be it. I happen to know that he finds the following lists in the book especially interesting: “Big Numbers,” Presidents of the United States,” “Bones in the Human Body,” “Palindromes,” and “Weather Words.” For compiling these clever lists into this book that Alex has enjoyed for years, I would personally like to thank Linda Schwartz.


Another book he has been reading was a Christmas gift from 2006, The Best Stocks You Can Buy 2007 by John Slatter. Alex has had a fascination with the stock market for a few years, so he has about five annual editions of Slatter’s book that we gave him for Christmas gifts. I’m not certain why he selected the 2007 version of the book, but I’m sure he has some reasoning for his interest in this particular book that is now five years old. When he starts giving us good investment advice, we’ll know that we made wise decisions in encouraging his interest in stocks by giving him these books.


Since Alex has an interest in money, I found a toy cash drawer with play money a few years ago that he has enjoyed from time to time since he received as a Christmas gift one year. Lately, he has been doling out the fake currency and coins, leaving the phony money on the floor and on tables throughout the house. Maybe he’s leaving tips for Ed and me for the excellent service we provide for him. Whatever his logic, he has certainly gotten our money’s worth out of that gift that only cost two dollars.


Another Ghost of Christmas Past in this collection is the television “plug and play” video game 1 Versus 100, based upon the game show of the same name. Since Alex really likes playing video games and watching game shows on television, this seemed like the perfect combination. A Christmas gift from thee years ago, he pulls it out to play every few months or so.


One of Alex’s favorite Christmas gifts from the past is one he carries around nearly every day, a handheld educational electronic toy called an iQuest. Loaded with questions about science, math, and social studies, this electronic gadget has keep Alex amused for hours Unfortunately, the manufacturer Leap Frog no longer makes the iQuest, which is a shame because it’s a great learning device. While the Leap Pad that replaced it offers more entertainment in the form of color and graphics, the iQuest’s simplicity and emphasis on facts appeals to Alex, and he has learned a great deal from playing with it. Most kids probably wouldn’t appreciate that, though, which is probably why the iQuest is now listed as a “collectible” toy.

As I surveyed the group of former Christmas gifts that had engaged Alex’s interest that day, I was pleased that I had been right about what kinds of things he would like. Also, I’m glad that he still enjoys things he has had for years, finding them entertaining even after all this time.

“Remember the things I have done in the past. For I alone am God! I am God, and there is none like me.” Isaiah 46:9

Wednesday, November 23, 2011

Thanksgiving

For last year’s pre-Thanksgiving blog post [which can be accessed by clicking here], I described all the things regarding Alex that made us thankful. This year I’d like to express gratitude for all the annoying phases he eventually outgrew or just got tired of doing.

I’m grateful that Alex no longer needs to check the microwave clock before he uses the bathroom to see what time his toileting begins and ends. Ed is especially pleased he outgrew this phase because Alex often stopped the microwave mid-cycle to check the “official” time when Ed was using it to cook. I know this because I frequently heard Alex’s rapid button pressing followed by Ed’s muttered cursing.

I’m relieved that Alex doesn’t slam doors anymore as he’s waiting for his bath water to run. When he was younger, he would run from door to door, slamming them closed in a pre-bath time ritual. This nightly routine made me extremely nervous, not only from having to listen the banging sound of doors closing abruptly, but also from the worry that Alex might catch his fingers in the doors as he slammed them shut. Thankfully, no fingers were lost before he got bored with this evening activity.

I’m pleased that Alex no longer objects to our using contractions when we speak. One summer he became irritated any time we would say contractions, such as don’t or can’t, and insisted that we use the more formal do not or cannot. I have no idea why he thought he was the grammar police that summer, but we were happy when he got past that stage.

I’m glad that Alex doesn’t insist that people keep their legs uncrossed when they’re seated. For some reason, when he was younger, he developed an aversion to people crossing their legs when they were sitting, and he would complain, “No crossing legs!” If we ignored his orders, he would come over to us and pull on our legs to uncross them. We found that it was easier at the time to sit with our feet flat on the floor, but I must confess that sometimes I crossed my legs just to annoy him. Now he could care less how people sit; in fact, he usually sits cross-legged himself.

I’m thankful that Alex stopped imitating football every time he heard the word or saw it on tv. He went through a phase where he would pick up things and throw them like a football and/or run and dive as though he were tackling an opponent all the while yelling, “FOOTBALL!!” Ed and I became very good at quickly changing the channel anytime a football game or commercial came on the air, and we hid the sports pages during football season. Although children with autism are described as not engaging in imitation or imaginative play, Alex apparently thought he was Chicago Bear Brian Urlacher and was determined to act out this part. If his sudden running, throwing, and tackling imaginary opponents hadn’t startled us, we might have found Alex’s behavior funny. We were just glad that it only lasted one football season.

I’m happy that we don’t have to change light bulbs as often as we did when Alex was younger. When television commercials would abruptly change from one to another, Alex would yell, “SWITCHOVER!” and for some inexplicable reason, tip over lamps, often breaking the light bulbs in the process. Besides several light bulbs, he also managed to break a few lampshades and a couple of lamps. That was a somewhat expensive phase, so we were especially pleased when he got over that destructive one.

I’m glad that Alex no longer enjoys turning up the volume of televisions, radios, and CD players to full blast. At one point, he found this hysterically funny, probably because it annoyed Ed and me so much. We would hide the remote controls, and I even taped shut the door that covered the manual volume controls on our televisions so that he couldn’t blast us with the sound. Similarly, he enjoyed a brief stage in which he would press the button repeatedly to find the handset for our cordless phone, producing a loud beeping sound that amused him terribly. Fortunately, the novelty of irking us with the loud sounds wore off quickly.

People say, “Someday we’ll look back on this and laugh,” and thinking about some of these things Alex used to do now strikes me as kind of funny. However, I am glad that he no longer engages in any of these irksome activities. Also, as I think about his current behaviors that are annoying, I realize that eventually these, like the previous ones, will eventually fade. And for that, we will truly be thankful.

“The Lord is my strength and 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, November 20, 2011

Tweaking

From time to time, we sense that Alex needs slight changes in his nutritional supplements, and that leads me to searching Google and thumbing through my well-worn copy of Prescription for Nutritional Healing. A couple of weeks ago, Alex was having anxiety attacks on a daily basis, and they seemed to be escalating. At the same time, his face was breaking out increasingly, which seemed to be an inflammatory response. I e-mailed Alex’s chiropractor, who has been treating his allergies, and he immediately suggested that we give him essential fatty acids. For some reason, Alex does not do well on the omega-3 fatty acids found in fish oil; they make him hyperactive and cause insomnia. Instead, we tried flaxseed oil, a different omega-3, thinking that because it was plant-based, he might have a different reaction. However, he reacted negatively to flaxseed oil, as well, with a middle-of-the-night meltdown, so we had to take him off that. Instead, we tried an omega-6 essential fatty acid, evening primrose oil, which we have given to him successfully in the past. Evening primrose oil does not have the negative side effects in Alex that the omega-3 oils do, and his face looks much less red and irritated, so that does seem to be helping. In addition, we decided to put him back on the amino acid GABA. We had taken him off GABA this summer when he seemed lethargic, but now that he’s more energetic, we felt he needed the calming effects GABA offers him. Since Alex is so sensitive to changes, we must tweak these adjustments carefully and gradually so as not to overwhelm his system.

One day after Alex had experienced two especially aggressive anxiety attacks, Ed and I decided that he probably needed to have his prescription medication altered, as well. After unsuccessfully trying to reach our family doctor, I called our local mental health facility to see if a psychiatrist could see Alex to address his anxiety issues with medication. After I explained our situation and concerns clearly to the receptionist on the phone, she informed me that the soonest we could get an appointment would be about six weeks. Attempting to persuade her to find an earlier appointment, I explained how anxiety makes him aggressive, and since he’s six feet tall, he is a physical threat when he’s in this mood. Unmoved by my pleading, she simply suggested that if he’s a danger to himself or others, we should call the police to restrain him and have him taken to the emergency room, where he could have a psychological evaluation. [Yeah, that sounds like a plan. Take someone who’s already upset and then make that person hysterical by involving police, restraint, and the ER.] Clearly, this was not going to be the way to solve the problem, so I told her we would take him to our family doctor instead.

The next morning, I was able to schedule an appointment with our family doctor, but Alex had another panic attack and refused to go to the doctor. Undaunted, I went to his appointment and explained how he had been obsessing over strange things, such as gas prices from years ago or how deep his voice is, and then becoming anxious and agitated, which caused his adrenaline to kick into “fight” of the “fight or flight” mode. The doctor was very sympathetic and understanding of our concerns, and his years of experience, probably along with his emergency physician training, enhance his ability to assess and diagnose the symptoms. He thought that hormonal changes are likely aggravating Alex’s OCD, and when the obsessions are unresolved, his anxiety heightens and causes adrenaline to kick into high gear. To address these problems, he has increased Alex’s Prozac from 10 mg., which he felt was doing not enough to keep his OCD under control, to 20 mg. for a week and then to 40 mg., and he recommended that we continue to give him low doses of Ativan to control his anxiety as needed. The only problem with Ativan is that it can become addictive, and patients can develop a tolerance that requires higher doses. However, as he looked at the scratches on my hands and wrists, where Alex had attacked me while I tried to give him the sedative the day before because he was so distraught, the doctor noted that we had to weigh the risks and benefits. The risk of my getting hurt was greater than the risk of Alex becoming addicted to low doses of Ativan, and the benefit of sedation was safety during meltdowns. He also told me that I can call him at any time with any concerns or if we need to adjust or change the medications. As I left the doctor’s office, I felt thankful that we have a doctor who will see us immediately and does not make us wait six weeks to see him, who clearly understands what happens when Alex is anxious, and who offers not only his medical expertise but his sympathetic nature. After a week of these changes, we’re relieved that the minor adjustments seem to be easing Alex’s anxiety, and we continue to pray that all of us will enjoy more peace and calm around our home as Alex gets better.

“Then you will have healing for your body and strength for your bones.” Proverbs 3:8

Wednesday, November 16, 2011

Acccessories


One of the most interesting aspects of my job as a part-time middle school teacher is that I can observe [mostly] “normal” teenage behaviors. Often I compare and contrast how my students act with how Alex does to note how autism has impacted his behavior. The apparent need for teenagers to travel with accessories is something I have noticed in my seventh grade students as well as in Alex, so this must be a characteristic of teenagers in general. While my students frequently carry electronic devices, such as cell phones and iPods (although they may not display them openly during class since school rules prohibit their use during class time), Alex carries around different accessories that reveal his interests and needs.


Before and after school, students often use their cell phones to text, e-mail, and call their friends and parents. Because we cannot trust Alex to use a cell phone wisely, he—unlike most teenagers—doesn’t have one. I’m not sure who he’d call or text anyway, other than maybe 911, and we don’t need the police showing up on our doorstep to answer Alex’s false alarms. Besides, communicating verbally with others doesn’t rank highly on Alex’s list of priorities, anyway. Instead of a cell phone, Alex prefers to carry an electronic dictionary, perhaps so that he can look up the meanings of words he wants to know. In addition, he often carries around the more traditional dictionaries, in the form of books, but he likes the convenience of the compact electronic version.


Another accessory middle school girls carry is lip gloss, which they sometime surreptitiously apply during class. A few months ago, Alex went through a phase where he carried around lip balm. He only applied the lip balm before he went to sleep, but he liked to carry not one but two tubes of Blistik with him—one regular type and one mint flavored. If he couldn’t find his, he’d take mine. Before he went to bed, he had to make sure that he put the lip balm on his dresser. At some point, his fascination with lip balm ceased, and now I occasionally find tubes that he’s left behind in various places.


Of Alex’s accessories, his favorites are his clocks. Because of his fascination with time, he rarely goes anywhere that he doesn’t carry a clock with him. Although he has several battery-operated clocks that he can move from room to room, he seems to have three that are particular favorites. One is a talking clock that announces the time, often startling me when he’s left it behind in a room where I’m sitting. Alex especially likes clocks that also have thermometers built in so that he can keep track of the temperature along with the time. The other day, taking advantage of a temperate November afternoon, Alex went outside and sat on our backyard deck, carrying, of course, his clock with a thermometer. As he happily watched the time pass before his eyes on the clock, he noted the temperature changes as the sensor sat in the sunshine. While most teenagers would prefer listening to music on their iPods, Alex enjoys watching the numbers change on his digital clock/thermometer as the temperature varies and the seconds and minutes go by. Even though Alex carries different accessories than his peers do, he seems to enjoy the same sense of security, comfort, and entertainment they provide for him that similar items do for other teenagers. Hopefully, soon he’ll prove trustworthy enough to earn the accessory most of his peers possess—the ever-present cell phone. Of course, knowing Alex, he’ll just be thrilled that he can use it to find the time and temperature; he doesn’t need much to make him happy.

"Those who use the things of the world should not become attached to them. For this world as we know it will soon pass away." I Corinthians 7:31

Sunday, November 13, 2011

Allies

At times, dealing with autism feels like fighting a war. As we try to gain ground, we are sometimes pushed back by the enemy or even forced to retreat. We think we are making progress, and then anxiety or sensory issues or some other aspect of autism takes us back and makes us feel our efforts have been futile. Recently, the reappearance of Alex’s anxiety attacks have made us feel that we have been living in a minefield, where we must tread carefully so as not to do anything that might set off his explosive behavior. During these difficult times, we need our allies most, even though it’s often tempting to shut out the world and try to deal with the problems on our own. Sometimes this self-imposed isolation occurs because we are embarrassed by our children’s behavior, even though they can’t help the way they are acting, and at other times we are so overwhelmed we don’t know how to reach out to others and explain our situations.

I must admit, I’m not good about asking for help. Part of my need for independence is pride and thinking that I can handle things on my own, and part of my unwillingness to seek assistance from others lies in my never wanting to be a burden to others. When people ask, “Is there anything I can do to help?” or say things such as, “If there’s anything I can do to help, let me know,” we often think they’re just being nice and don’t really mean it. However, I have been blessed with special people in my life who mean what they say, genuinely willing to help, so long as I am willing to take them up on their kind offers. I described some of these special people and how they have supported us in various ways in a previous blog entry, “Support,” which can be accessed by clicking here. They have set wonderful examples of how friends and family members can help parents of children who are dealing with autism, especially during the trying times when they need support most.

Thanks to the examples set by the allies in our life, I would like to offer the following suggestions for anyone who wants to help families dealing with autism.
1. Listen—Sometimes we just need to talk about our situation. Verbalizing our fears and frustrations makes them more manageable than leaving them racing around in our minds. We don’t expect you to understand everything we’re experiencing, but your sympathetic ear helps us deal with problems in a constructive way. I keep waiting for my mom to send me a bill for all the “therapy sessions” she does with me over the phone, allowing me to vent, brainstorm, and just talk about Alex and his issues.

2. Compliment—When things are going wrong, we often wonder if we are doing the right things. By reassuring us with kind words that we are good parents, you strengthen our confidence and boost our spirits. A friend told me this week, “Alex is so lucky to have you and Ed as parents,” which was what I needed to hear when we’ve been struggling to help him deal with his anxiety.

3. Write—Send parents of children with autism e-mails and notes from time to time to let them know that you’re thinking of them and that you care. We can’t always visit or talk on the phone because we’re dealing with the demands of our high-maintenance kids, but we can read your words when we have free time and savor the kindness behind them. I have saved thoughtful notes friends have sent at various times and will pull them out and re-read them when I need encouragement. One day this week when Alex was having an especially bad day (which, of course, also affects Ed and me), one of my close friends, who didn’t even know how frustrated I was at the time, sent me an e-mail to let me know she was thinking of me and hoping that Alex gets better for my sake as well as his. By touching base through writing, family and friends can help share concerns and offer support.

4. Pray—If you don’t know how to help, the best thing you can do is to pray. Pray for the parents to have strength, courage, patience, and wisdom so that they can help their children to overcome the obstacles of autism. Pray for the children to overcome their fears, sensitivities, health issues, and developmental delays. Pray for a cure for autism so that these children don’t have to suffer and their parents don’t have to struggle to help them. Let the parents know that you keep them in your prayers. Those who pray for us bless us with their thoughtfulness, reassure us that we’re not alone, and remind us that as we walk through the battlefield, God is always on our side. With our allies beside us, we walk toward the victory. As the Apostle Paul wrote in Romans 8:31, “If God is for us, who can ever be against us?”

“You and all your allies—a vast and awesome army—will roll down on them like a storm and cover the land like a cloud.” Ezekiel 38:9

Wednesday, November 9, 2011

Sugar-coating

This past week, two reports in the national news regarding autism caught my attention. An article in USA Today entitled “Adults with Autism Speak Out” notes, “Today, as more children with autism enter adulthood, some are rejecting the idea that autism is a disease to be cured.” Not surprisingly, those adults with autism who vocally oppose the concept of curing the disorder are usually at the high-functioning end of the spectrum and are often categorized as having Asperger’s Syndrome. Some feel that the desire to cure autism means a lack of acceptance of the child as he or she is. As Cathy Pratt, director of the Indiana Resource Center for Autism, states in this article, “If their autism is part of their character, part of how they identify themselves, to say to them that we have to cure you now is really saying that we don’t accept who they are now.” Asserting that autism is not only something to be accepted but also a condition to be celebrated is Dana Renay, president of the Autism Society of Indiana. Ms. Renay, who is also the parent of a child with autism, is quoted in the article as saying, “People with autism can do anything they want to do. They should be given the opportunity to be whomever they want to be, and part of the greatness of who they are is their autism.” [To read the entire article, click here.]

Echoing this concept that autism offers certain benefits, a Fox News report, “Autism Can Be an ‘Advantage,’” points out that “scientists need to stop viewing the traits of autism as flaws that need to be corrected,” as explained in a recent commentary in the journal Nature. According to University of Montreal psychiatry professor Dr. Laurent Mottron, “Recent data and my own personal experience suggest it’s time to start thinking of autism as an advantage in some spheres, not a cross to bear.” Dr. Mottron supports his position by noting that people with autism often display extraordinary memories and special skills in auditory and visual tasks. On the other hand, Dr. Mottron also points out the realities concerning the challenges autism poses, stating, “One out of ten autistics cannot speak, nine out of ten have no regular job, and four out of five autistic adults are still dependent on their parents.” [To read the entire report, click here.]

As I previously explained in my blog entry “Curebie,” I am a parent who actively seeks and prays for a cure for autism. Perhaps my recent experience with Alex’s anxiety attacks over the weekend has made me especially frustrated with those who sugar-coat the realities of autism. After watching our nearly twenty-year-old son become so agitated that he hurled his six-foot frame at Ed and me, hitting, kicking, and biting, I fail to see how autism is an advantage. As he yelled about his obsessions, enhanced by his phenomenal memory, ranting repeatedly about exact gas prices on specific dates several years ago and frantically blurting, “I’m sorry!” and “Happy New Year!” over and over to make certain we knew how angry he was, we have trouble seeing these autistic behaviors as anything but flaws, “crosses to bear” for all three of us. Sadly, we’re not the only parents dealing with these upsetting behaviors that need to be eradicated instead of celebrated. Certainly, we love Alex unconditionally and know that he can’t help the way he behaves, but we hate what autism does to him. Just as my parents refused to allow me to walk around terribly nearsighted and made certain that I had glasses or contact lenses to help me deal with the limitations of my eyesight, Ed and I have worked to help Alex overcome the obstacles autism has presented in his life. While I always try to maintain a positive attitude, I refuse to look at autism through rose-colored glasses, and by sharing our experiences honestly, I hope that others are not blinded by those who present autism as something wonderful. Of course, those with autism deserve understanding and acceptance, but what they deserve most is to be able to live life to the fullest, happy and free of the limitations of autism—able to express themselves, hold down jobs, and live independently. Don’t all parents want that for their children?

“For they do not speak peace, but they devise deceitful matters against quiet ones in the land.” Psalm 35:20

Sunday, November 6, 2011

Snapshot


As I walked into our kitchen the other afternoon, I discovered Alex had left an interesting arrangement of his belongings on the kitchen table. Realizing how much that array of items revealed about him, I immediately grabbed the digital camera to record what he had left behind, the way an archeologist records ancient artifacts to demonstrate how people in other civilizations lived. For those who have not lived with a child who has autism, I offer this visual evidence along with explanations of the significance of each essential item.

In the top left of the picture, a size 9 Nike athletic shoe can be observed. This shoe, a right one, happens to belong to Alex, who apparently placed it on the kitchen table himself since Ed and I don’t put shoes on the table. While some may be surprised to find a shoe on the kitchen table, around here we find Alex’s shoes in all sorts of unusual places. Whenever he gets tired of wearing his shoes, he takes them off and leaves them right where he is. Often, we find them on the couch where he’s been reading, in the middle of the bathroom floor after he’s been using the toilet, or anywhere in the house where he’s been walking and decided he’d prefer to be shoeless. As the spirit moves him, Alex takes off his shoes and dumps them where he’s standing. That answers the question of why his shoe is on the table, but the next logical question might be, “Where is the left shoe?” or “Why is there only one shoe on the table?” Sometimes Alex decides to only remove one shoe, which has led us to nickname him over the years as “Johnny One Shoe.” He often does the same thing with his socks, wearing a sock on one foot and going barefoot with the other, which has led us also to dub him as “Johnny One Sock.” Fortunately, he finds both nicknames amusing. As for that left shoe, it was under the kitchen table; maybe he didn’t find it worthy of being on the table with the right one. That’s a question I can’t answer, and Alex certainly won’t reveal his reasoning.

In the center of the table are the remains of his afternoon snack, gluten-free and casein-free cake. Alex frequently leaves one or two bites of food on his plate, as illustrated in this photograph. Also, like a typical kid, he eats all the frosting but leaves a little cake in his dish. After discovering that Alex had food sensitivities to glutens (the proteins in most grains, including wheat) and caseins (the proteins in milk and milk products, such as cheese), for several years we have kept him on a strict diet that avoids these proteins. He never complains about his restricted diet, and we are fortunate that he eats a variety of foods well. With more people on gluten-free diets, the availability of gluten-free products on the market has increased significantly since he started on the diet, which makes life so much easier for us. I used to make all of his treats from scratch, carefully measuring three different gluten-free flours (rice, tapioca, and potato starch) to make the perfect baking blend along with xanthum gum powder, which helps hold the ingredients together, the way glutens do in most flours. Last year, Betty Crocker came out with gluten-free baking mixes that are readily available at grocery stores, and this has made baking cakes for him much easier. The cake in the bowl was from a Betty Crocker gluten-free (and casein-free, made with Fleischmann’s unsalted corn oil margerine) yellow cake with Duncan Hines classic vanilla frosting (also gluten-free and casein-free). This particular cake was baked for Ed’s birthday although I also made a chocolate chip cheesecake for Ed. Whenever we have birthdays, I typically make two cakes, one Alex can eat on his restricted diet and another one with typical ingredients for everyone else to eat. I never want him to feel as though he’s missing out on the celebration because of his special dietary needs. I’m just thankful that he enjoys eating the cakes I bake for him.

At the top is yet another typical reminder of Alex, a kitchen timer. As I’ve mentioned in previous blog entries, Alex is obsessed with time, so he often consults calendars, clocks, stopwatches, and timers. I’m certain that his love of math and numerical values is related to this extreme interest in measuring time. He can usually be seen carrying around at least one timer or small battery-operated clock as he moves from room to room, and for some reason he must have something that measures time when he eats. The timer pictured is a particular favorite of his; my parents bought it on sale and thought he’d like to have it. Often we’ll hear random beeping coming from another room and realize that either Alex is setting the timer or has set the timer previously to make it beep. He’ll even carry around timers and clocks that need new batteries just because they seem to make him feel secure, whether or not they are working. One of the good things about Alex’s love of clocks is that he has learned how to set the time for every clock—and we have many—in our house, which comes in especially handy on days like today, where the time change necessitates adjusting all the clocks. Now if we could just get him to put his shoes where they belong, that would be helpful, too.

“Don’t worry about your personal belongings, for the best of all the land of Egypt is yours.” Genesis 45:20

Wednesday, November 2, 2011

Grasping at Straws

For more than fifteen years, ever since Alex was diagnosed with autism, I have spent countless hours researching autism, hoping to find something that will help him. One of the benefits of having been an English major in college is that I developed research skills through a great deal of practice. Moreover, from all the reading I was assigned as a student, I learned to read rapidly and assimilate information. This has been immensely helpful as I’ve done autism research, especially since I don’t have a lot of time for research because of taking care of Alex. Some of the information I’ve found has been useful, and we’ve implemented interventions with Alex after careful consideration and often after running the details past his doctor. The Internet has been a godsend for us because we can easily follow the latest studies on autism. Certainly the most valuable aspect of the Internet has been our ability to connect with other parents of children with autism so that we can share ideas; other parents have frequently been our most valuable resource in knowing what strategies to try with Alex. In addition, I follow medical research in autism, constantly seeking something that could ultimately cure Alex.

Last month, two research studies regarding autism were reported in the national news that I found curious. One of these studies analyzed the facial features of children with autism. [A link to this research can be accessed by clicking here.] According to this research, children with autism have wider eyes, a broader upper face, a shorter middle region of the face (including the nose and cheeks), and a wider mouth and philtrum (the divot between the nose and upper lip). After reading about these findings, I, of course, began studying pictures of Alex to see if he also fit these characteristics. As I scrutinized Alex’s photos, I observed that his eyes are set like Ed’s, and his mouth is identical to mine. If, indeed, both features are wide, he’s inherited them from us. As for his philtrum, I’m guessing it’s like mine; I’ve never actually seen Ed’s philtrum because he’s had a moustache as long as I’ve known him. Maybe Alex’s facial features are not obviously “autistic” because he’s on the high functioning end of the spectrum. The study indicated that the more severe the autism in terms of behavior and language difficulties, the more distinct the facial features in children. While I found this research somewhat intriguing, I soon found myself asking, “What’s the point?” Apparently, the thought behind the research is that knowing when the changes occur in the facial features could help in finding an underlying cause of autism. The author of the study, Dr. Kristina Aldridge, assistant professor of anatomy at the University of Missouri School of Medicine, explains, “Knowing that point in time could lead us to identify a genetic cause, a window of time when the embryo may be susceptible to an environmental factor, or both.” I tend to be skeptical about the value of this research, especially considering the number of children who were typical at birth but then regressed into autism. Moreover, I think that this type of research will not quickly lead to medical interventions that can actually help children who currently have autism, wide eyes and mouth or not.

Another finding regarding anatomical differences in children with autism was reported last week; this one dealt with structural anomalies in lungs. [A link to this article can be accessed by clicking here.] Pediatric pulmonologist Dr. Barbara Stewart of Nemours Children’s Clinic in Pensacola, Florida, documented that she noticed differences in children with autism when she examined their airways with a bronchoscope. In normal lungs, airways branch off the bronchial tubes in random, asymmetrical patterns. However, she discovered that in children with autism, their airways were symmetrical and doubled up into two smaller branches, which she calls “symmetrical doublets.” Despite these unusual structures, the children with autism had normal lung function. Although her findings have not yet been published in a peer-reviewed journal, she believes that these abnormal airways may be the “first anatomical marker” for autism. While these findings are interesting, I wonder how many parents would agree to allow their children to be examined with a bronchoscope. Moreover, I again question the wisdom of spending time and money researching anatomical structures instead of addressing known issues in autism: impaired language and social skills. Rather than grasping at straws by scrutinizing facial widths and airway branches, doctors need to be looking for ways to address anxiety, digestive issues, and impaired detoxification systems common in children with autism. Of course, I’m not a doctor; I’m an English teacher who happens to have a child with autism. However, with autism incidence increasing at rapid rates and a generation of children with autism who will soon be adults, research to address pressing issues must be done. Our children with autism deserve at least that much.

“But ask those who have been around, and they will tell you the truth.” Job 21:29

Sunday, October 30, 2011

Gleaning

One of my favorite things to watch on television is old re-runs of Little House on the Prairie on the Hallmark Channel. The other day, I saw an episode from the first season of the series that I had seen several times before. However, as I watched it, I found myself moved more deeply than I had been in prior viewings. In this episode, Pa Ingalls had planted a successful wheat crop that was about to be harvested. Pleased with the fruits of his efforts, he has his daughters calculate how much money the wheat will bring when taken to market. Then, they begin making a list of the things they will buy with the money earned from the wheat. In a terrible twist of fate, that night a hailstorm comes and ruins the crops along with the hopes the Ingalls family had of selling the wheat so that they can buy necessities. Disappointed but not defeated, Pa must leave town and go in search of a job to earn money. Staying behind with her three young daughters, Ma decides to rally her women neighbors to glean the grain from the damaged stalks by hand, salvaging some good from the devastation the hail brought. By pulling together, the family did not allow the destruction of the crop to destroy them.

Life with autism is like that. As parents, we sow seeds through various therapies and interventions, hoping that our children will flourish and grow. Sometimes, we have such high hopes for a great harvest and even start planning what we will do when the harvest finally arrives. Other times, we face droughts where nothing seems to be growing, or we cope with infestation by grasshoppers, such as allergies or illness, that attack. Perhaps most frustrating, however, are the sudden hailstorms, those unexplainable setbacks, that appear to destroy all the progress achieved. Last year, Ed and I were figuratively standing in the middle of our fields, thankful for the abundance we had witnessed with Alex’s progress. His behavior had improved significantly; to the point we could take him to restaurants, concerts, and stores confidently, knowing that he would act appropriately. Moreover, his cooperative attitude made teaching him new skills and working on his weaknesses, namely his speech and social skills, easier. We knew this was an opportunity, and we made the most of the situation.

In the late spring, a hailstorm in the form of allergic shutdown threatened to destroy all we’d worked hard to reap in that Alex became less cooperative, less talkative, and less interactive. Despite our best efforts to reclaim what could be lost, we have had to work at trying to get Alex back to where he was previously. Essentially, we have gone back to the fields to glean what we can recover so that everything the three of us have worked diligently to achieve will not be lost. Stepping around Alex’s anxiety and obsessions, we have tried to engage him in activities that interest him and encourage him to develop and improve while trying to avoid upsetting him. At times he reminds us of the old joke: "What happens when you cross a gorilla with a parrot? I don’t know, but when he talks, you’d better listen!" While we’re glad that he’s talking again after some self-imposed silence a few months ago, we hope he starts talking more about things he likes than things he doesn’t. In the meantime, we keep picking through the battered crops, gleaning the good that we can find along the way and refusing to give up on the hope for a good harvest eventually.

"And she said, ‘Please let me glean and gather after the reapers among the sheaves.’ So she came and has continued from morning until now, though she rested a little in the house." Ruth 2:7

Wednesday, October 26, 2011

The Dance

Recently, Alex has been spending time engaged in a new activity--dancing. As I've mentioned in previous blog entries, he really likes music: everything from jazz to country, so long as it's not rap music. He's been listening to our cable television's Music Choice channels lately, especially music from the 70's, 80's and 90's. A few nights ago, he heard Chumbawamba's 1997 one-hit-wonder song, "Tubthumping," which has now become one of his favorite songs. Apparently its catchy lyrics ("I get knocked down, but I get up again") and driving beat inspire him to dance. After hearing the song on Music Choice, he found it on You Tube and played it over and over, having his own little dance party in the family room that evening.



Perhaps the inspiration for Alex's sudden interest in dancing can be traced to his watching the movie Saturday Night Fever last weekend. Fortunately, he was watching the edited-for-television version, so instead of imitating the profanities, he could try to imitate disco dancers' moves. Since Alex has always liked the Bee Gees' music from listening to their CD's with me, I wasn't surprised that he enjoyed the dance sequences. What was surprising was that he watched the entire movie and then watched it again when it was repeated another night.



Although we're pleased that Alex seems to enjoy dancing so much, it's too bad that his moves aren't too smooth. Ed has a terrific sense of rhythm that makes him a good dancer, and I won a disco dance contest when I was Alex's age. Poor Alex, however, didn't inherit any natural ability to dance, and so far, he hasn't picked up any of John Travolta's grace on the dance floor from watching the movie. Somehow Alex seems to sense his awkwardness, as he'll immediately stop dancing if Ed or I walk into the room. I think he knows that his dancing is more like Elaine Benes on Seinfeld than John Travolta on the lighted dance floor.



Even though Alex seems to have two left feet, Ed and I enjoy secretly watching him dance because he exudes such joy moving to the music, so long as he doesn't know that anyone is watching him. Perhaps he exemplifies William W. Purkey's quote best: “You've gotta dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.”

"Let them praise His name with the dance; Let them sing praises to Him with the timbrel and harp." Psalm 149:3