Appearance Vs. Reality

 

“Appearances are often deceiving”—Aesop

In last week’s blog entry, “Temporary Bump,” I described dealing with Alex’s recent various health issues.  After fighting yeast overgrowth for months that invaded his mouth in the forms of thrush and cheilitis, we were coming to the end of a month-long run of taking the antifungal prescription drug Diflucan daily, which we hoped would finally mark the end of dealing with candidiasis. After fighting a cold for a week, I was back to feeling good and was thankful that Ed and Alex seemed to have avoided my germs. After taking Alex to the Minute Clinic on Saturday for a sore on his scalp, we believed that he had folliculitis, an infection of the skin easily treated by antibiotics. However, the appearance of a few blisters on his skin made me wonder if something else could be happening. After I posted my blog on Sunday morning, I assumed anyone who wanted to read it could access it online.  What a difference a week makes! I discovered this week that what appeared true last week was not exactly reality.

First of all, some friends and family have told me that lately they have been unable to access the most recent installments of my blog. They can see the picture and the title, but what follows is the text of the previous week’s blog instead of the new entry. Apparently, the old entries are visible, and if they wait a week until I post a new entry, they can then read the entry that did not appear the previous week. However, the newest entry again cannot be seen, other than its title and picture. Trying various browsers, I found that Google Chrome, Safari, and Firefox had no issues showing the blog correctly; the culprit seemed to be Explorer. Because Ed is more tech savvy than I when it comes to online publishing, I asked him to figure out what was wrong with the blog when someone uses Explorer. He found that many blog websites have been having issues with Explorer not showing the complete text, and fixing the problem is not a simple matter. Therefore, I recommend that any readers of my blog use a browser other than Explorer to read the entire text in a timely fashion.  However, those who are devoted to Explorer can just wait a week until the old text decides to make its appearance with the new title and picture.

Aside from the blog posting glitch, this week we finally received the results of Alex’s yeast tests that were done a few weeks ago. A swab culture of his mouth and a blood test to determine the presence of candida antibodies both came back negative, which suggests that he doesn’t have yeast overgrowth, after all. Basically three possibilities exist for these test results: false negative results, successful eradication of the yeast by antifungal medication, or something else has been causing the sores in his mouth. The nurse practitioner who prescribed the month-long use of Diflucan gave us a referral to an ear-nose-throat specialist who might be able to diagnose the problem. With the Thanksgiving holiday, Ed and I decided to wait before making an appointment with the specialist, especially since Alex’s mouth looks much better. Taking him to a doctor without any symptoms seems pointless, and we’re hopeful that he is, indeed, healed of the condition that two doctors and three nurse practitioners diagnosed as thrush and cheilitis, forms of candida overgrowth. Also, Alex has a weird fascination with ear-nose-throat doctors, whom he refers to as ENT’s, because he researched them a few years ago when he wanted to have his voice surgically altered. If we can avoid taking him to an ENT, we may be able to avoid the obsessive conversations about his desire for vocal cord surgery that doesn’t even exist. Mainly, we just pray that that the yeast overgrowth and whatever caused it is finally gone.

Last week’s appearance of a nasty sore on Alex’s scalp sent us to the CVS Minute Clinic, where a nurse practitioner diagnosed him with folliculitis, an infected hair follicle. After giving Alex oral antibiotics and treating the sore with antibiotic cream, we have been amazed and pleased how quickly this infection has healed. The evening after we took him to the Minute Clinic, we discovered a small blister behind his ear and two on his shoulder. After some Internet research and consulting with my mom, sister, and sister-in-law by phone, we diagnosed Alex with chicken pox. Moreover, we suspected that the sore on his head might have also been a blister that was knocked off accidentally and became infected. Even though Alex had the chicken pox vaccine when he was younger, apparently mild cases of chicken pox can occur in up to ten percent of people who have had the vaccine. We watched Alex carefully this week; fortunately, he had no more eruptions of pox and didn’t seem bothered by those he had, which are healing nicely. Perhaps this light case of the disease will finally give him the full immunity he apparently lacked.

After we seemed to be done with illness, a couple of days ago Alex started showing signs of the cold I had last week. Thankfully, he seems to have a mild case, as I did, but he has a little bit of congestion. With his various contagious ailments, we decided not to risk exposing anyone to whatever Alex might have that could be catching, and so the three of us spent a quiet Thanksgiving at home. Among the blessings for which we are thankful are the doctors and nurses who have helped us find ways to make Alex healthy again and for the improvements we have seen in him. I’ve heard people say that fear is an acronym for “false evidence appearing real.” Even though I first heard actor Gary Busey say that on the reality television show Celebrity Apprentice, where his behavior was a little scary, I think he makes a good point. So often, we worry about things that seem really frightening, and in the end, they are not what they seem.  I have fretted too much over various symptoms Alex has shown, and I need to remember that God is taking care of him, making sure he’s going to be fine. No matter whether Alex has thrush, cheilitis, folliculitis, chicken pox, a cold, or any other illness that looks like these conditions, he’s on his way back to health. For that, we are truly thankful.

“But all who listen to me will live in peace, untroubled by fear of harm." Proverbs 1:33

Blog Stats

When I started writing One Autism Mom’s Notes about a year and a half ago, I had no idea that people around the world would be reading my essays about family life with autism. Thanks to the statistics Blogger.com provides, I know that my blog has been read in North America, South America, Europe, Asia, Africa, and Australia. I’ve even learned some geography as I’ve looked up the exotic locations of Moldova and Turks and Caicos once I saw that people from those places had read my blog. Of course, I’m most grateful to my friends and family who faithfully read my entries, comment on my writing, and even catch typographical errors for me at times.

So how do people who don’t know me find my blog? According to the stats page, the Autism Blogs Directory [Click here to access this site.], which lists my blog along with many others, is a primary referral site, and I appreciate the work of the two autism moms who run this site. In addition, Ed has posted links on his respected and popular blog, One Poet’s Notes [Click here to access his blog.], which has led readers to me. As I tell him, I appreciate whenever he gives me a “shout-out” in his blog, which has a huge audience, and sends some of his readers my way. Another referring site is a favorite blog of mine, Real Housewife of the Bluegrass [Click here to access her blog.], beautifully written by my friend K.C. Wells, who not only posts a link to my blog on her site, but also encourages me regularly through her thoughtful and supportive comments.

In reviewing the most read posts, one of my earliest posts, “Speech Therapy” (July 18, 2010), tops the list as overwhelmingly the most read entry. Considering how important speech therapy is to children with autism, I suppose the interest in this post isn’t too surprising. One of my most recent posts, “What Causes Autism?” (January 15, 2012) has taken second spot on most read blog entries. Since parents eagerly seek a cure for autism, I would guess this post’s title raised some curiosity. This entry summarizes possible causes of autism as suggested by Dr. Shaw’s research. The third entry on this list, “Dr. Oz” (February 20, 2011), has the advantage of a celebrity’s name in the title. Ed, who has been blogging longer than I have, has told me that if I wanted to increase the interest in a blog entry, all I needed to do was to include a celebrity’s name, such as Paris Hilton. These days Kim Kardashian or Demi Moore might pique more interest, but the beloved Dr. Oz’s name apparently sent readers to my blog entry describing an episode of his talk show last year that focused upon autism. Perhaps the most surprising among the favored posts is “Funny Remarks” (October 27, 2010), in which I shared humorous comments Alex has made over the years. Maybe those dealing with autism need something to lighten the mood, and I hope they enjoyed reading about the funny things Alex said as much as I enjoyed reflecting upon and writing about them.

Bloggers often find the search words that led readers to their blogs can be cryptic and even amusing. Not surprisingly, most people found my blog by searching for my name or autism, but a few of the phrases that led them to One Autism Mom’s Notes are interesting. One of the popular search phrases is “autism and haircuts,” which indicates this issue is a greater problem than most people realize. When Alex was little, he had fits at the barber, which led me to learn how to cut his hair myself. Until a few months ago, he was fine with that. Unfortunately, he now balks at having his hair cut; the last time I cut his hair, we had to bribe him with cake. (Whatever works!) Another search phrase frequently used to find my blog is “autism and hiccups” or conversely “hiccups and autism.” Maybe this is a common phenomenon; we have noticed that Alex sometimes gets hiccups when he takes Ativan, which is a side effect of this medication he needs to calm himself with his anxiety is high. A search phrase I found interesting was “annoying autistic”; I’m not sure if this means things that annoy the person with autism or that the person with autism is annoying. Personally, we have experienced both; apparently, others have, as well. The most amusing search phrase probably led the searcher to my blog entry about toilet training; the phrase “moms in toilet” struck me as funny. After spending nearly ten years of toilet training Alex, I did spend a lot of time with the toilet and am thankful that he finally mastered this task. As I continue to write entries for One Autism Mom’s Notes, I hope that readers—whether they be friends and family or people I’ve never met—find our stories helpful and hopeful as we keep working toward helping Alex overcome the obstacles of autism and reach his full potential.

“I rise early, before the sun is up; I cry out for help and put my hope in Your words.” Psalm 119:147

Blog Anniversary

Tomorrow will mark the one year anniversary of the first appearance online of my blog, One Autism Mom's Notes. I must have been having fun the past 364 days because time seems to have flown since then. As I look back over the various 115 posts I've written this past year, I'm surprised that I had that much to say. I'm even more surprised, however, and definitely pleased that people seem to like what I've written, and I always appreciate their kind comments on the blog, on my Facebook wall, in e-mails, and in person. The encouragement of those reading the blog, whether they be family, friends, colleagues, fellow autism moms, or people around the world I've never met who have stumbled across my writing when Googling autism, have motivated me to keep sharing our story in hopes of helping families dealing with autism as well as those who want to know more about what life with autism entails.

Last year at this time, Alex wanted to remember his childhood. Now, he's trying to forget the obsessions of his youth, telling us he no longer wants to play Bosconian or Monopoly Junior, games he used to play for hours on end but abandoned a few years ago because he thought they took too much time. He'll also tell us that he doesn't want to use his graphing calculator or typewriter, both of which used to be prized possessions of his before he got a laptop computer last summer, which replaced both items in appeal and usefulness. Even pi digits, which he researched intensely and memorized successfully a few years ago, have fallen out of favor for Alex. This past year, he seems to be gaining a greater awareness of himself and the world around him, focusing less on numbers and patterns that used to give him comfort by giving his world order and predictability. While this move away from obsessions marks progress, at times he seems overwhelmed by stimuli around him, and he needs time to process everything, becoming quiet and introspective. Nonetheless, Ed and I continue to try and get a glimpse of his mind, asking him questions, engaging him in conversation as he'll allow us, and regularly checking his Internet search history to see what he's currently investigating. As Alex makes sense of the world, and as we figure out what he's thinking, I know there will be more stories to tell, and I look forward to sharing them and recording them for him to reflect upon someday. In that spirit of reflection, I share my first blog post from last year, "Remembering" once again.


For years, my family and friends have been telling me that I should write a book. I knew what I would write, yet I resisted their encouragement because raising my son, who was diagnosed with autism in 1996, has consumed so much of my time and thoughts that I wasn't willing to take on another project. Of course, the book I would write would be about raising a child with autism and all we have learned on this journey, in hopes that it might help other parents. My son Alex is now eighteen years old, and I'm still not ready to write that book yet. I keep waiting to discover how things will turn out for my main character.

Lately, Alex has been obsessed with the idea of what his earliest memories are. He has watched videotapes of his childhood, has poured over the hundreds of photos we took of him as a child, and has asked us repeatedly on a daily basis about how far back he can remember. All the while, he carries around a picture of himself at age four. He tells us that he remembers in April 1996, when he was four years old, he got a clock at Kmart. For most children, this would be insignificant, but for Alex, who uses numbers and measuring devices to make sense of the world in terms of time, dates, temperatures, stock market statistics, and even the hundreds of irrational pi digits he has memorized, this seems a fitting first memory.

During this recent search for Alex's younger self, he has enjoyed hearing stories about when he was very young because they help him reconstruct a time he cannot remember. Now I realize how important it is to write his history, if for no one but Alex, so that he can see how far he has come. For those who wanted me to write a book, this blog is as close as I can get to that right now. I'm busy remembering for Alex, so that he can piece together his life experiences so far.

"So teach us to number our days, that we may gain a heart of wisdom." Psalm 90:12

One Hundred

Today I’m celebrating a special milestone: this marks the one hundredth blog entry I’ve written for One Autism Mom’s Notes. If someone had told me last summer when I started writing this blog that I’d be able to write one hundred entries, I would have doubted my ability to find that many topics to discuss. Coming up with a name for the blog was challenging in itself, and I wound up essentially copying the title of Ed’s blog, One Poet’s Notes. I hoped at the time he’d think that “imitation is the sincerest form of flattery.” However, he probably knows me well enough to realize that what I lack in creativity I make up for in tenacity. Thankfully, nineteen years of parenting Alex have provided a wealth of stories, some more interesting than others, I’m sure. While I originally intended for my writing to provide Alex with a written history of his life, I’ve been pleasantly surprised that other people seem to enjoy reading what I’ve written, too.

One of the fun aspects of writing the blog has been checking the statistics to see where the blog is being read as countries light up on a world map. Shortly after I began writing the blog, I was delighted to see that my entries had been read on six of the seven continents of the world. (I’m not holding my breath for readers in Antarctica since I think they probably have greater concerns than the musings of an autism mom.) So far, the blog has been read in the following sixty-five countries around the world: Algeria, Argentina, Australia, Austria, Bahrain, Belgium, Belize, Brazil, Bulgaria, Canada, China, Croatia, Czech Republic, Denmark, Ecuador, Egypt, Estonia, Finland, France, Germany, Greece, Hong Kong, Hungary, Iceland, India, Indonesia, Iran, Ireland, Israel, Italy, Japan, Kuwait, Latvia, Lithuania, Luxembourg, Malaysia, Moldova, Netherlands, New Zealand, Norway, Qatar, Pakistan, Panama, Paraguay, Peru, Philippines, Poland, Romania, Russia, Saudi Arabia, Singapore, Slovenia, South Africa, South Korea, Sri Lanka, Sweden, Taiwan, Thailand, Turkey, United Arab Emirates, United Kingdom, United States, U.S. Virgin Islands, Vietnam, and Zambia. (Not being as strong in geography as Alex, I had to look up where Belize and Moldova are located.) Although I don’t actually know who’s reading my blog other than those who tell me in person or through written comments, I do know that here in the United States, my blog has been read from coast to coast: in the East on Long Island by Ed’s sister, in the West by my mom’s childhood friend and now mine in California, in the South by Ed’s youngest sister in Florida, and in the North by my aunt in Minnesota.

To all of those who have read One Autism Mom’s Notes, written nice comments, given me “Likes” on my Facebook page, and complimented me in person, I appreciate your kindness and support. I am also grateful to my mom, who lovingly encourages all of my efforts and reads my entries more than anyone and who, along with Ed, is good to catch any typos I make and point them out for me to fix. Having English teachers in the family comes in handy. In addition, Ed, who is an experienced blog writer, has patiently shown me how to format the blog while never making me feel technologically challenged. On a side note, today is also the anniversary of our first date twenty-seven years ago. I can’t imagine going through all the ups and downs of raising a child with anyone other than Ed, who is a wonderful husband and father. Of course, the blog would not exist without the inspiration of Alex, who has taught me more about life than anyone. While I would happily wish away the obstacles autism has brought to his life, I’m very proud of who he is and thankful for the lessons we’ve learned along the way. Our love for him drives us, our faith in God guides us, and our hope for the future keeps us striving to help Alex reach his full potential. In the words of my favorite poet, Robert Frost: “I always entertain great hopes.” In the meantime, I’ll keep writing Alex’s story until he can tell it himself, which will be a fascinating account, I’m certain, and one I hope he’ll be willing to share, as well.

“Still other seeds fell on fertile soil, and they produced a crop that was thirty, sixty, and even a hundred times as much as had been planted!” Matthew 13:8

Returning to Routines

In June, I decided that one of my summer projects would be to start writing about Alex and some of the ways that autism has impacted our lives. While I had thought about doing this for a while, I never made the time to dedicate myself to this task. Creating a blog, I thought, would discipline me to write on a regular basis and would afford me the opportunity to gain feedback from others about what I had written. Initially, I had intended for this to be a way for Alex to remember his childhood, perhaps as atonement for abandoning writing in his baby book once I suspected he had autism, as I explained in the blog entry “Milestones.” Then, I realized the writing has helped me come to terms with various events in Alex’s life. Some of the bittersweet memories are no longer bitter since we’ve learned to find the humor in situations that didn’t seem funny at the time. In addition, we’ve been able to share some of our lives with family and friends who knew parts of the story but not all of the details. In telling our experiences, I also hoped that other parents of children with autism might find our stories helpful, especially since we have weathered storms and are now enjoying sunshine most of the time.

When I first started writing the blog entries, I thought that only my parents and Ed would faithfully read them. My mom has always been my biggest fan and my favorite brainstorming partner, and she has fulfilled both roles regarding this blog. Providing encouragement, constructive criticism, and ideas for writing, she, as always, has been loving and supportive as my mother and Alex’s grandmother. Ed, who has written a very successful blog of his own, “One Poet’s Notes,” for several years, has not only given me frequent reassurance that I can do this, but he has also patiently taught me how to attach photos and links, given me advice about layout and writing, and promoted my blog by mentioning it in his own. Moreover, he’s a terrific father to Alex; I couldn’t have raised this child successfully without his unselfish love for both Alex and me. Of course, Alex, the inspiration for these writings, continues to bless us with his unique outlook on life, his humor, and the joy he finds in unexpected places. Writing the blog has opened up a new line of conversation between the two of us as he reminds me of the details I’ve forgotten. To watch his reactions—often his shudders of delight—as he reads what I’ve written about him is more reward than I could ever ask for. The unexpected blessing in writing this blog has been the outpouring of encouragement from Ed’s family and my friends. In my entry “Support,” I wrote about how fortunate I have been to have very caring friends, and I have been reminded this summer that God has surrounded us with such loving and compassionate people. After a little over two months and thirty blog entries, my writing has been read nearly two thousand times, which boggles my mind. Although I don’t know who has read my entries, other than those who have told me or written to me, my site meter shows that my blog has been read on five continents and in twenty-five countries around the world, which I never would have expected. However, more than ever, I am motivated to tell Alex’s story and share a hopeful message that life with autism does get better over time.

This week, Ed will resume teaching his three college English courses in the afternoons and evenings, Alex will start his senior year of home school lessons (mornings with Ed, afternoons with me), and I will begin my school year of teaching three seventh grade English classes in the mornings. While I am sad to see the summer end, especially since the three of us have thoroughly enjoyed our time together, we anticipate a good year as we return to routines. Ed and I are fortunate to have jobs that we enjoy and that allow us to be with Alex more than most jobs do. Alex, who likes routines, eagerly looks forward to a new school year because he has never lost his curiosity about the world and his love of learning. As much as I have liked structuring the blog in threes with three entries per week of three paragraphs each (perhaps representing the three of us), I know that the responsibilities of teaching Alex and my seventh grade students will limit my time to reflect and write. Consequently, I will combine my Tuesday and Thursday blog entries into one on Wednesday, but will continue the Sunday entries as we return to our school schedules. While I’m pleased that I’ve been able to accomplish what I set out to do in June, I have a notebook filled with jottings I want to develop into entries that I hope people will want to read. The encouragement I’ve received from family, friends, and followers, along with God’s faithful support, has made me believe that writing should now be part of my routine, and I hope that those who read it will be as blessed as I have been by their kindness.

“I can do all things through Christ who strengthens me.” Philippians 4:13