Sunday, December 30, 2012

Christmas Gifts

With the Christmas rush behind us, we can take time to savor the season and appreciate the unexpected gifts we may not have noticed in the flurry of activities surrounding the holidays. Specifically, I am grateful for the following “gifts.”

For once, Alex actually gave me specific ideas about what he would like for Christmas. In years past, he would occasionally make a suggestion or two, but this year, he seemed to have some definite ideas about what he wanted. One request was a Chicago Cubs blanket, which was a great idea because his medications make him feel cold a lot of the time, and he is often wrapped up in a blanket to keep warm. A quick Google search enabled me to find a nice fleece blanket with the Cubs logo at Bed Bath and Beyond, which my mom picked up for him and gave him as a present from my parents. This gift has been put to good use this cold week, as Alex wraps himself in the soft warmth of the blanket.

Besides the blanket request, Alex also asked for some DVDs; he wanted the entire Shrek collection of movies and a movie about football. This led me to online shopping at Amazon, where I found all four Shrek movies in a nice set and a DVD on the history of the Chicago Bears. What Alex didn’t know was that I had made a great Black Friday purchase from Target of a portable DVD player on sale for half price so that he can watch DVDs in his room. Interestingly, Alex has not had a lot of interest in watching movies the last few years even though he loved watching Disney movies when he was little. Recently, he decided he wanted to watch the Harry Potter movies, and we were surprised how well he was able to focus upon the plot and enjoy the movie. This improvement in his attention span is a gift in itself to us.

Another pastime Alex has enjoyed lately is listening to music. Throughout the month of December, he and I listened for hours on end to Christmas CD’s. While we have several Christmas music CD’s by country singers that he knows and likes, he decided that his favorite one was my Amy Grant Christmas CD. In fact, he’s now such a fan of hers that he says she’s his favorite singer, and he’s requested to listen to her other CD’s that I have. Had I recognized his devotion to her, I would have gotten him one of her CD’s for Christmas. Instead, I went with his previous favorite singers and bought him the most recent CD’s from Alan Jackson and Taylor Swift, both of which he likes, as well. Fortunately, Alex and I share similar tastes in music, so listening to music is a pleasant activity that we can do together.

Aside from the various typical gifts, I’m also thankful for other improvements in Alex. One of these is the reemergence of his sense of humor.  When he was overwhelmed with anxiety, he seemed to have lost his quick wit, which also seemed dulled by the medications to help his anxiety and made him sleepy. Because he’s been more alert lately, he’s more observant and better able to communicate. A couple of weeks ago, Alex was talking to my brother and asking him how much he weighed. When my brother told Alex his weight, Alex was thrilled to have that information. Although Alex weighs forty pounds less than my brother, when asked how much he weighs, he immediately deducted two pounds from my brother’s weight and claimed that’s how much he weighs. He was delighted when we all laughed at his comment, and it was nice to see him enjoy making a joke.

Another positive change is Alex’s desire for grooming. Last year, he refused to cooperate with getting haircuts and shaving, perhaps because these activities overwhelmed him with sensory stimuli. As a result, he looked like a shaggy bum for several months. Now, not only does he allow me to cut his hair and shave him, but also he seems to enjoy being groomed and even asks me for haircuts or shaves. He looks so much better with shorter hair and clean-shaven, and I’m pleased that he lets me keep him well groomed.

Probably the most noticeable difference in Alex is that he welcomes my presence. Last year, he much preferred Ed’s company to mine, even telling me bluntly at times, “Mommy is leaving now!” Lately, he likes hanging out with me, listening to music, watching television and videos, and just talking. I’m pleased that he seems to be coming out of the fog and is able to answer and ask questions clearly so that we can have conversations again. Of course, there can be too much of a good thing, and he’s currently a bit clingy, wanting to know where I am at all times, which at times feels a bit like I am being stalked. While I’m glad that he likes my company, I’m hopeful that he will soon be less of a Mama’s boy so that he can be more independent in entertaining himself, and I can go about my activities without always providing him a detailed report of where I’m going and what I’m doing. In the meantime, I remember that he won’t always want to hang around with me, so I need to enjoy his adoration while it lasts.  Truthfully, I’ll be glad when he’s not as fond of me, though.

Reflecting on this Christmas season, I’m thankful for the joy we can now see in Alex’s eyes when he’s engaged in his favorite activities, the love that has carried the three of us through good times and bad, and the hope that Alex will continue to get better and better. In the words of an Amy Grant Christmas song that is a favorite of Alex’s and mine: “Love has come for the world to know, as the wise men knew such a long time ago. I believe that angels sang that hope had begun when the God of glory, who is full of mercy, sent His Son.” And in the words of Charles Dickens’ beloved character Tiny Tim, “God bless us, every one!”

“Now may the God of hope fill you with all joy and peace in believing.”  Romans 15:13

Sunday, December 23, 2012

The Tragedy of Sandy Hook

Since the December 14th senseless tragedy at Sandy Hook Elementary School in Connecticut, where twenty young children and six staff members were killed, people have been trying to come to terms with why and how something this terrible could happen.  Debates over the need for stricter gun control laws, along with plans for increased security measures in schools, as well as discussions of how to address mental illness have filled the media. However, rational minds simply cannot grasp the irrationality of such a horrific act.

In trying to explain the motive behind the actions of killer Adam Lanza, someone who knew his family explained that he had been diagnosed with Asperger’s syndrome, an autism spectrum disorder. This information immediately sent the autism community scrambling to distance autism from the dangerous and deadly behavior exhibited by Adam Lanza. Major autism organizations issued statements to declare that autism would not drive a person to commit such heinous crimes. Specifically, the National Autism Association posted on its website: “There is no link between planned violence and Autism Spectrum Disorders.” Similarly, the Autism Society of America addressed concerns, stating, “No evidence exists to link autism and premeditated violence. Many of individuals with Asperger’s syndrome who have committed crimes had co-existing psychiatric disorders. Individuals with autism who act aggressively typically do so because they are reacting to a situation.” 

If, indeed, Adam Lanza had Asperger’s syndrome, he likely also had another psychiatric disorder, as suggested by the statement from the Autism Society of America. Common comorbid conditions associated with autism include obsessive-compulsive disorder, bipolar disorder, depression, and general anxiety disorder.  In fact, one study reported that nearly 84 percent of individuals with autism spectrum disorder also met the criteria for diagnosis with an anxiety disorder. While autism alone presents many obstacles, the additional conditions create more problems that require intervention. Unfortunately, help is not always readily available.

Last week, a friend sent me a link to the online article “I Am Adam Lanza’s Mother” [To read this article, click here.] and wanted to know my opinion regarding this controversial essay.  In telling about her 13-year-old son and his extremely challenging and frankly frightening behaviors, Liza Long candidly declares that her son has the potential to be as dangerous as Adam Lanza. In the essay, she admits, “I live with a son who is mentally ill. I love my son. But he terrifies me.” Despite all her best efforts, she has struggled mightily to get him the help he needs, but she has found few and limited mental health resources available.  

Although Alex’s behavior was never as extreme as Liza Long’s son, I could sympathize with her frustration and fears.  As I have explained in previous blog entries, when Alex was fifteen years old, he began exhibiting aggressive behaviors that were completely out of character for our docile, gentle son. After having to wait six weeks to get an appointment with a child psychiatrist, who offered no real help and admitted that I knew more about autism than he did, we realized how little help is available. Thankfully, Alex’s doctor gave us a prescription for the sedative Ativan, which we could give him when he was having meltdowns to help calm his anxiety and curb his aggression so that Ed and I could physically manage him. Once he outgrew that phase, which was likely tied to hormonal changes of adolescence, we thought we would no longer have to worry about medicating him to keep everyone safe. We were wrong.

About a year ago, we again began seeing aggressive behaviors linked to anxiety in Alex (as I have also detailed in previous blog entries). Not only were these outbursts more intense than they were five years earlier, but the increase in Alex’s size and strength as a six-foot-tall young man made these meltdowns dangerous. As we desperately sought help for him, we kept running into dead ends. The waiting list to see a psychiatrist was nearly two months, and two trips to the local ER showed that they could only sedate him and send us home with more Ativan.  We had to make three calls over a three-month period to the police to help us safely control him when his aggression became so intense we could not restrain him ourselves. When we finally pushed for our local mental health facility to admit him as an inpatient, they told us that they would only admit him if he were homicidal, suicidal, or psychotic. Eventually, after asking many questions, we discovered that they would not admit him at all because he has autism, which they consider a developmental disorder instead of a mental disorder. No one seemed to know how to help Alex, and fortunately, my intensive Internet research led us to St. Anthony Memorial Hospital in Michigan City, whose Behavioral Medicine Department admitted him as an inpatient and provided him with the care he desperately needed.

While Alex was being treated in the hospital, we kept questioning the staff as to whether he had some co-morbid condition that was causing the behaviors that were so different from his typical self. The psychiatric nurse practitioner who has overseen his medication since he was hospitalized and who has considerable experience treating adults with autism explained to us that aggression is quite common in young men with autism. She diagnosed him as having autism with aggression and impulse control issues and felt certain that he did not have bipolar disorder or another coexisting condition. After weeks of trying various medications in various combinations and dosages, she finally found a therapeutic mix that keeps Alex calm so that we can manage him at home without fear. As we have been working to find services for Alex, some of the caseworkers who have read through Alex’s list of medications have commented about how many psychiatric medications he is taking, almost in a critical way. Although we wish that Alex didn’t have to be on any medications, until his potential for aggressive behavior subsides, we must keep him on this regimen so that he does not become a danger to himself or others. This is an unfortunate reality of our situation, but we are thankful that medications make him able to function, especially since Ed and I are responsible for his complete care. In thinking about Liza Long’s situation and wondering about what Adam Lanza’s mother faced with her son, I feel frustrated that finding help for children and adults with severe behavioral issues is so difficult for parents. Perhaps if interventions were more readily available, tragedies like Sandy Hook could be prevented.

In reading the profiles of the Sandy Hook Elementary students who lost their lives, I was saddened and surprised to find that two of the twenty children killed had autism. Through statements provided by their parents, Josephine “Joey” Gay was described as having nonverbal autism, and Dylan Hockley, who died in the arms of his teacher Anne Marie Murphy, also had autism. The vulnerability of these two children is heartbreaking, and the prevalence of autism, as evidenced that two of the twenty children were victims of this condition as well as victims of the action by a killer who perhaps had autism himself with coexisting mental illness, is also deeply concerning.

Certainly, Adam Lanza’s mother should not have kept guns in her home. Certainly, Adam Lanza needed help. Certainly, schools need to make security a priority. However, from our experience, the key issue that needs to be addressed is making help for children with autism and mental illness a priority so that parents can readily access resources instead of constantly seeking and fighting for them. Ignoring these problems will not make them go away, and the consequences for society could very well be—as we’ve unfortunately seen—terribly tragic.

“Do not stay so far from me, for trouble is near, and no one else can help me.” Psalm 22:11

Sunday, December 16, 2012


Today is Alex’s 21st birthday. Although most young men his age would likely be excited about going out with friends to celebrate this milestone, Alex has simply requested that Ed and I take him to Wal-Mart this afternoon, and he is looking forward to shopping with us. Even though autism has robbed him of a typical life as a young adult, he thankfully is unaware of the things he’s missing.  For Alex, life is good, so long as he has places to go, good food to eat, a comfortable bed for sleeping, and Ed and I helping him with the things he still can’t do for himself. As I have mentioned in previous blog entries, Alex is blessed because he finds joy in the simple things.

Last year, I was asked to write an essay about raising a child with autism that became part of a published collection entitled, Wit and Wisdom from the Parents of Special Needs Kids. For my submission, I decided to write about the night I went into labor with Alex and how that foreshadowed what life with autism might entail. In honor of Alex’s 21st birthday, I thought I’d share an excerpt from that essay, “Expecting the Unexpected.”

With a swift kick to my ribs, I was wide awake at 3:00 A.M. Eight months pregnant with Alex, I knew that since I was awake, I might as well go to the bathroom. Once I got there, an unmistakable gush mean that my water had broken, and labor had begun, three and a half weeks earlier than expected.
Thinking that I had more time to prepare, I had not packed a suitcase yet, nor had we put together his crib. After awakening my husband and phoning my parents, we headed off to the hospital, uncertain of what was ahead of us since this was our first child, who would also turn out to be our only child.

Because I had developed an autoimmune bleeding disorder, my pregnancy was deemed high-risk, which meant a flurry of activity and an insistence by my obstetrician that I have a Caesarian section under general anesthesia. Although we were disappointed that we wouldn’t see Alex being born, [Ed was not allowed in the delivery room; I think the doctor was worried there could be complications.] we were thankful that the birth was safe for both of us, and we thought we had smooth sailing once the pregnancy was over.

However, we had no way of knowing that autism was in our future. The first year, Alex met all of his developmental milestones within the normal range, but after that, we noticed signs that pointed to language and social delays common in autism. 

Through the years we have learned that Alex must always do things on his terms when he’s good and ready. For us, life with autism has meant learning to wait patiently and to celebrate successes when they arrive—essentially a matter of always expecting the unexpected.

And so, today we celebrate how far Alex has come in twenty-one years:  all the successes he’s enjoyed and all those we anticipate he will accomplish in the future. From the baby who announced his imminent arrival in the middle of the night and nearly a month early to the young man who still surprises us with his unique perspectives and amazing memory, Alex teaches Ed and me to be patient, have faith, and trust God. Happy Birthday, my beloved son Alex!

“Yes, You have been with me from birth; from my mother's womb You have cared for me. No wonder I am always praising You!” Psalm 71:6

Sunday, December 9, 2012

Beyond Pollyanna

I have a confession: I am a Pollyanna. For those who haven’t read Eleanor Porter’s classic novel named after its heroine, Pollyanna is the girl who always finds reasons to be glad, no matter what the circumstances. Her optimistic attitude has become so widely known that the dictionary defines Pollyanna as “a person characterized by irrepressible optimism and a tendency to find good in everything.” This admission comes as no surprise to my family and close friends. My positive attitude has even influenced Ed after years of being married to me. This week he told me that he realized he’d started thinking like me because instead of being annoyed that he didn’t feel well, he was thankful that he had come down with a cold when he did since he had various obligations the weeks before and after he got sick. With Alex and the challenges of autism, this upbeat attitude has helped me put things in perspective. Sure, he can’t tie shoelaces, but he likes wearing slip-on shoes.  While he’s on a restrictive diet, he’s a really good eater.  Although he has to take several pills a day, he swallows them with ease and never complains. I’d like to think he gets that Pollyanna attitude from me.

While I always try to see things in the best light, some things about autism just can’t be praised. This week, I ran across three blog entries whose writers’ perspectives regarding autism confused me. The first, entitled “Autism: Not Something to be Feared, but Embraced” is written by Andrew Clark, a college senior with Asperger’s Syndrome, an autism spectrum disorder. While I appreciate his willingness to share his perspective as an adult with autism, I’m puzzled by his assertion that autism is something to be celebrated. He describes his poor motor skills and sensory issues that make his sense of touch, smell, and taste overly sensitive. Moreover, he talks about how he was cruelly bullied all through school by his peers. Yet, despite these obstacles he’s faced, he thinks autism is a good thing, to the point that parents should not try to cure their children. He comments that with autism,  “parents see their children in emotional agony and want to be rid of the ‘ailment,’ so money gets thrown around to find the cause, which would naturally lead to a search for a cure.  Society then views the ‘disorder’ as this horrific malady that isn’t understood but feared by the average person.”

I think any parents who see their children in “emotional agony,” yet fail to do everything to free them from this crisis would be negligent. Furthermore, I disagree that money spent on finding a cause or cure for autism is “thrown around” because anything that makes life better for these children is worthwhile, as I discussed in a previous blog entry, “Curebie.” I also find the author’s use of quotes around the words ailment and disorder as puzzling since autism obviously is an ailment, often with physical symptoms, and typically is classified as a developmental disorder. Perhaps because he has been diagnosed with autism, he does not see himself as having a disorder. On the other hand, since he will graduate from college, he clearly has overcome many of the obstacles autism often presents. While I agree that those with autism should not be feared, the consequences of not addressing the rapidly increasing rate of autism should, indeed, be feared. Perhaps he will be able to live and work independently, but many on the autism spectrum cannot, and that is scary.

In another blog entry with a similar point of view, “Why Autism Isn’t Always Bad,” writer “Aunt Becky,” the mother of an 11-year-old son with autism, asserts that autism is a good thing. (Aunt Becky also writes a blog called Mommy Wants Vodka, which has a tagline: “Mommy drinks because you cry.”) Pointing out that her child is “only lightly affected by the disorder,” she states in bold print: “Autism gets a bad rap.”  Well, of course, autism gets a bad rap; it can affect a child’s language, interaction with others, behavior, family life, health, and future. Autism deservedly gets “a bad rap.” She goes on to describe her son as having “delicious quirks” that are “simply to be enjoyed. They're quirky and adorable.” While quirkiness may be entertaining in a child, those kinds of behaviors typically do not translate well in the adult world. She goes on to assert “the priceless lesson”:  “that being normal is overrated.” Certainly, we would hope that others would be tolerant of our children’s differences, but even better would be that our children would not exhibit those quirks that call attention to themselves; being “normal” would make their lives much easier.

The third blog entry I read this week regarding impressions of autism was written by Jo Ashline, the mother of a 10-year-old son with autism, in her blog, A Sweet Dose of Truth. In her recent post, “Congressional Hearings on Autism: My Son Is Not a Burden,” she pointed out her upset that in the recent hearings in Congress (which I discussed in my blog entry last week, “Fighting for Our Children”), statements were made that children with autism were “a burden.” Although she candidly confesses that as a parent of a child with autism, she herself has felt “paralyzing fear,” “overwhelming exhaustion,” “lingering loneliness and unrelenting frustration at my lack of ability to help my child in the way I so desperately desire,” she asserts, “But I have never, not once, not even for a nanosecond, felt that my son was a burden.” If, she truly has never felt a sense of burden, I applaud her. Although I love Alex with all my heart and soul and would do anything to help him, there are times when the frustration, fear, exhaustion, and even despair caused by autism has led me to feel burdened, to yell, “I want my life back!” or to pray that he will sleep a little longer so that I can get some much-needed rest or to feel jealous of parents who have “normal” children. (I never said I was a perfect Pollyanna.) At those times when my positive attitude fades, I have to remember that the burden is not Alex—the burden is autism. Perhaps that clarification needs to be made when speaking of these children, who are victims of an affliction that should not be “embraced,” deserves its “bad rap,” and truly imposes a “burden.”  Therefore, I will keep fighting so that Alex has everything he needs to be the best he can be. Those who disagree with me can celebrate autism all they want; I will think positively in my own way, believing and hoping for a cure—a real reason to be glad.

“So be strong and courageous, all you who put your hope in the Lord!” Psalm 31:24

Sunday, December 2, 2012

Fighting for Our Children

This week, the U.S. House Oversight and Government Reform Committee held meetings in which members of Congress questioned representatives from the National Institutes of Health and the Centers for Disease Control as well as autism advocates regarding the recent significant increase in autism. Fifty years ago, the U.S. autism rate was 1 in 10, 000 children; under the current epidemic, 1 in 88 children in the U.S. has autism. A controversial topic discussed was the potential role of vaccines, which the NIH and CDC insist has no link to the increase in autism rates. However, their research studies that often focus upon genetics have not proven helpful in dealing with the rise in autism or in helping those already diagnosed with autism.
By contrast, autism advocates emphasized the need for environmental research, treatment, and services, especially for adults with autism, who have limited resources currently available to them. During the hearings, the need for parental input, which is often ignored by scientists, was emphasized since parents have direct experience with autism. Rep. Paul Gosar of Arizona commented on the valuable knowledge parents of children with autism have, stating, “We should be focusing on the family. They’re telling you what’s going on.”

In watching video clips from the hearings on C-SPAN’s website, I was impressed with many of the members of Congress who showed great compassion for the families touched by autism and frustration with the government agencies who are failing to serve these children. Despite the millions of dollars spent on research, a definitive cause for autism appears to be nowhere in sight, and they appear to be no closer to discovering a cure. Furthermore, services for children and adults with autism cannot keep pace with the rapid rise of newly diagnosed cases. I watched as parents and autism advocates in the audience nodded their heads in agreement as to what needs to be done to help and shake their heads or roll their eyes in frustration as representatives from the NIH and CDC failed to give any useful information. These government agencies need to know that parents of children are not going away quietly, and with dramatically increasing autism rates, there are going to be even more parents demanding answers and help for children and adults with autism.

One of these autism parent-advocates, Lorri Shealy Unumb, appeared on the stage of the NASCAR Sprint Cup Awards on Friday evening with her son Ryan, who has autism. After her son was diagnosed, she discovered that insurance companies would often not pay for services for children with autism. Using her legal expertise as an attorney, she drafted a bill for the South Carolina legislature regarding insurance reform so that children with autism would be covered. Known as “Ryan’s Law,” this bill has been enacted in 31 states to help families with autism get insurance coverage for their children’s treatment. In addition, seeing the need for appropriate education for children with autism, she established the Autism Academy of South Carolina. As a fellow autism mom, I was delighted that NASCAR recognized Lorri Shealy Unumb’s outstanding efforts to help families dealing with autism by honoring her with the Betty Jane France Humanitarian Award. 

If there is any doubt about parents’ commitment to their children with autism, one only need to observe the efforts they expend to help their children get better. This week I had the opportunity to meet three autism parents whose devotion to their children was apparent in our conversations via e-mail, phone, or Facebook. The first, Julie Tracy, had left a comment on my blog telling me about her son, who is about Alex’s age, and the nonprofit organization her family has established to help adults with autism, the Julie and Michael Tracy Family Foundation. According to their mission statement from their website, “The JULIE + MICHAEL TRACY FAMILY FOUNDATION is dedicated to improving the quality of life and independent outcomes for adults with autism, advancing psychiatric research and expanding public awareness and understanding of this rapidly expanding demographic.” In addition, they are planning a residential setting for adults with autism that will allow them to develop independence and skills needed to be successful. Through our e-mails, I learned that Julie’s son, like Alex, had to be hospitalized for psychiatric treatment, and their experience made them realize the need for appropriate services for adults with autism, leading them to develop the foundation to provide necessary supports not currently available. Her devotion not only to her son but also to others like him motivates her to accomplish a noble goal to help adults with autism who cannot help themselves.

Besides my e-mail conversations with Julie, I had a phone call from an autism dad this week who told me about his two adult sons with autism; he and his wife have dedicated themselves to making life better for these two young men. Despite all our efforts and interventions, both of our families have struggled with our sons’ aggression. He and I discussed the various medications our sons have been prescribed to help them function better. Although neither of us works in the medical field, we discussed the medications, their classifications, generic names, and side effects as though we were pharmacists.  As autism parents, we have learned to navigate the medical field, learning the lingo along the way. During our phone conversation I was impressed with his fierce devotion to his sons and his optimistic attitude about making their lives better. Also, by connecting with him and Julie Tracy, I felt comforted that other parents had been through experiences similar to those Ed and I have had with Alex.

Another autism parent connection I made this week was with an autism mom through one of my Facebook groups. After finding out that her child has sensitivities to glutens, she decided to implement the gluten-free diet and wanted suggestions as to what her child could eat on this very restrictive diet. Since Alex has been on the gluten-free diet for many years, I was able to make some suggestions about gluten-free foods and substitutions. As she and I e-mailed back and forth several times, her strong motivation to help her child was evident, and I was pleased to be able to help get her started on the gluten-free diet. Throughout this week, I have been reminded that the only way the autism tide is going to turn is through the tireless efforts of parents who will not give up until their children get the help they so desperately need. Moreover, by working together, parents can share information, insights, and support so that we can accomplish our ultimate goal: helping our children to reach their full potential.

"I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." Matthew 17:20

Sunday, November 25, 2012

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

Sunday, November 18, 2012

Temporary Bump

Alex will turn 21 in less than a month, and one would think after that much time, I’d pretty much have most things figured out in this task called mothering. However, from time to time, I find myself temporarily baffled, engaged in an internal conflict as to what is the best thing to do. In these situations, Ed usually defers to my judgment, which sometimes adds to my anxiety, wondering if he really agrees with my decision or if he just thinks he shouldn’t question my maternal instincts. Anyway, one of those moments arose yesterday.

As I have written in previous blog entries, since June, Alex has been dealing with yeast infections in and around his mouth, and we have relied upon six different doctors or nurse practitioners to have him assessed and treated.  Three of the times, he became symptomatic on weekends, which meant taking him to a clinic open when doctors’ offices are not. Once we took him to urgent care when his regular doctor would not see him since he is now on Medicaid for his autism, and twice he has seen nurse practitioners at his new family doctor’s office. A couple of times, I have called the nurse practitioner who oversees his psychiatric medications on Friday afternoons to get prescriptions over the phone so that we would not have to take him to the off hours clinics. While all of these health care practitioners—all women, I might add—have been very sympathetic, compassionate, and helpful, I wish we had one consistent doctor or nurse practitioner who has seen him every time for consistency. Nonetheless, all have agreed upon the same medication for treatment, which is reassuring. This last round of the antifungal medicine, Diflucan, has spanned a month of daily doses, which Alex will finish on Monday.

A couple of days ago, I was thinking about this month of daily antifungals ending, hoping and praying that the medication had finally kicked out the yeast that has been invading Alex’s mouth. Ready for him to be healthy after all this time, I was encouraged that his mouth does look better. Then, this week I came down with a cold that was thankfully mild, which I attribute to taking Vitamin D drops. Even though my cold wasn’t that bad, I prayed that Ed and Alex wouldn’t catch the cold from me, and I faithfully washed my hands to try and keep the germs to a minimum. All week long, I have watched Alex for signs that—despite my best efforts—he has caught the cold, too. Fortunately, both Ed and Alex seem to have escaped getting the cold I’ve had.

With my cold gone, my guys remaining healthy, and the end of Alex’s yeast treatment hopefully in sight, I thought maybe things were finally on the right track health-wise. We were getting ready for a trip to Target, one of Alex’s favorite stores, to pick up a few things when I offered to help Alex comb his hair. Since he’s nine inches taller than me, the only way I can comb his hair properly is to have him sit while I stand over him. As I began combing his hair, which I had cut fairly short last weekend, I noticed a red splotch in his scalp that had not been there the previous day. Looking more closely and moving aside his hair, I saw that the red splotch was not just inflamed skin on his scalp but oozing fluid. This fiery red weeping sore was about an inch in diameter on the crown of his head. Having never seen anything like it, frankly, it scared me.

Not wanting to send Alex into panic mode, I knew better than to let him see my fears or let him know how bad the spot on his head looked. I told him he had some sticky stuff in his hair that I wanted to wipe with a washcloth, and he was agreeable. As I dabbed the sore spot, he never flinched or complained, which was a good sign. I asked him if his head hurt, and he said no, another positive. When Ed came to see why we were taking so long to get ready, I motioned him over and pointed to the sore on Alex’s head, and I suspect the facial reaction of shock he had was the same I had when I saw it for the first time. He mouthed, “What is it?”  In response, I shrugged my shoulders. However, I suspected an infection, so trying not to alarm Alex, I suggested we take his temperature, which was only slightly above normal. Nonetheless, my mother’s instinct that didn’t quite know what the cause of this sore was made me think that we needed to have it checked, so we headed for the CVS Minute Clinic here in town, where we had been pleased to get Alex such good care several weeks ago when his yeast infection flared on a Saturday afternoon.

Grabbing Alex’s medical file that contains his list of medications, our legal papers granting Ed and I authority to make medical decisions for him, and a copy of his Social Security card, I followed Alex and Ed out the door to the local CVS Minute Clinic. On the way there, questioning my decision, I asked Ed if I was overreacting to have Alex checked, but he confirmed my decision by telling me he agreed with me that we needed to have him examined. Fortunately, we didn’t have to wait at all, and the nurse practitioner was very sweet and kind to Alex and us.  After taking his temperature, pulse oxygen, and blood pressure, which were in the normal range, and listening to his heart and lungs, which sounded fine, she took a closer look at the sore on his head, which she diagnosed as folliculitis, an infected hair follicle apparently common in teenage boys and young men. She said her own sons had even had the same thing, which was comforting, especially since she commented that it looks worse than it really is. To assess whether the infection had spread, she carefully checked the lymph nodes in his neck and head, all of which were fine. To treat this infection, she gave us a ten-day run of antibiotics twice a day, and she recommended that we put antibiotic cream on his head to help heal it. The only concern we had about the antibiotics is that they can cause yeast overgrowth, which we’ve been fighting for months. She said that since he’s been on antifungals, he should be fine. Nonetheless, I will double his dose of probiotics to keep his digestive tract in good order while he’s on the antibiotics and hopefully keep the yeast from repopulating his mouth again.

Satisfied that Alex’s newest ailment had been quickly, properly, and accurately diagnosed, Ed and I were content that we had a plan to treat the infection on Alex’s scalp. In the words of Saturday Night Live character Roseanne Roseannadanna, though, “It’s always something! If it’s not one thing; it’s another.” Last night as Alex was getting ready for bed, I noticed a small spot on his shoulder, and upon taking a closer look, I saw that it’s some type of fluid-filled blister. A closer inspection revealed a similar tiny blister just below his ear. Of course, that sent me to the Internet to see what these strange blisters could be. With no definitive diagnosis, I’m hoping that the antibiotic will take care of them, as well.  If not, we’ll be headed back to the doctor yet again. In the meantime, I thank God for the compassionate doctors and nurse practitioners who have been taking care of Alex and for God’s healing that surpasses anything humans can do. As we wait, I’ll keep a close eye on that sore and those blisters, praying that they disappear quickly and making sure that I do all Alex needs for me to do as his mother and caretaker.

“For our present troubles are small and won't last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!” II Corinthians 4:17

Sunday, November 11, 2012

Forgoing Flu Shots

This fall, the urgency to get a flu shot seems greater than any other year in recent memory. Television and magazine ads stress not only how the shots protect against illness, but also how a new version offers a smaller needle, personified by a talking hedgehog who gets a haircut to show just how small that needle is. Besides doctors’ offices and health care facilities, pharmacies, discount stores, and grocery stores offer convenient opportunities for patients/shoppers to get vaccinated. Nearly every time I use the automated phone service to refill our prescriptions, I must listen to the pharmacy’s ad recommending that people get a flu shot now, followed by the times these shots are available at their stores.  

In dealing with Alex’s persistent case of thrush and cheilitis, or yeast overgrowth in and around his mouth, we have taken him to five different doctors or nurse practitioners in the past few months. In addition, he has had blood tests three times. Almost every time we have taken him for medical treatment or testing, we have been asked if he has had a flu shot this season. When we have said no, the health care provider has asked us if we would like for her to give him a shot, and every time we have said no. I then quickly and vaguely explain that he doesn’t do well with the preservative in flu shots, which usually ends the discussion. At his family doctor, I had to sign a form that we refused the flu shot and provide a reason in writing. Despite my desire to teach the staff with a more detailed explanation as to why flu shots are not a good idea for Alex, I simply wrote that he has adverse reactions to preservatives found in flu shots.

When I was younger, I was a proponent of flu shots. As a middle school teacher, I’m constantly exposed to various illnesses from my contact with students who may come to school ill or carrying germs prior to showing symptoms of illness. In addition, my internist recommended that I receive a flu shot annually because of the effect viruses can have on my chronic autoimmune condition, idiopathic thrombocytopenia. Basically, a virus can send my immune system into overdrive, causing my spleen to destroy healthy blood platelets, which are necessary for blood clotting. Since I already tend to have a low platelet count, the effects of a virus can potentially put me at risk for bleeding. Following my doctor’s advice, I would annually get vaccinated against flu. However, in those days, flu shots were not available on every corner, and I would constantly search the local newspaper every fall to see when and where flu shots would be given. One year, a limited supply of the vaccine allowed only the elderly and chronically ill to be eligible for flu vaccines, which meant that as a relatively healthy young adult, I didn’t qualify to receive a flu shot. Perhaps coincidentally or through blessings from God, that year I never became sick at all—no flu, no cold, nothing. In some years when I had gotten the flu shot, I still came down with flu, a possibility always mentioned when flu shots are given. After the year I stayed healthy despite not having a flu shot, I decided that I wouldn’t get flu shots any more, and I believe that I am healthier each winter than I was the years I received flu shots. For me, I suspect that not tampering with my body’s overly sensitive immune response enables my antibodies to react more appropriately when a virus or flu activates them.

For Alex, I have a different reason for refusing flu shots for him. When he was eleven years old, I asked his doctor if we could have him tested for heavy metals after I had read that many children with autism carry toxic loads of various heavy metals because their bodies have difficulty removing them in the detoxification process. Although she didn’t think he probably had heavy metal poisoning, she understood my concerns and agreed to run a heavy metals urine challenge test, which required that I collect his urine over several hours. When the results came back, she and we were surprised to discover that Alex had toxic levels of arsenic, lead, mercury, and aluminum. In fact, his arsenic levels were the highest she had ever seen. To remove the heavy metals, Alex had to go through chelation therapy by taking DMSA pills, a sulfur-based compound that binds with the heavy metals and removes them from the body through the urinary and digestive tracts. This process took over two years before testing showed that his heavy metals levels were in the normal range. While we don’t know the original sources of all the toxins, we suspect that thimerosal, a mercury-based preservative used in vaccinations, likely contributed to his mercury poisoning.

Even though most people in the medical community argue that thimerosal has no connection to autism, this mercury-based preservative was removed in 2001 from most vaccines children receive. However, many flu vaccines still contain thimerosal unless they are single-dose vials or syringes since thimerosal is supposed to protect multi-dose vials from contamination by bacterial or fungal growth. [I confirmed this information on the Centers for Disease Control and Prevention’s website. To go to their website on flu vaccine safety, click here.] One year when a particularly virulent strain of flu was infecting children, I asked Alex’s doctor if he should get a flu shot to protect him. She was adamant that he not receive the vaccine because of the effects of the thimerosal on him. In addition, she did not want him to have the nasal version that does not contain thimerosal because she felt the live vaccine it contains was not good for him, either. Instead, she assured me that prevention, such as washing hands and making sure he had proper nutrition and plenty of rest, would likely prevent his getting flu in the first place. If he did get the flu, she would treat him with antivirals and boost his immune system so that his body could fight the virus without the vaccine. I trusted her judgment, and Alex stayed healthy that year. Since then, I have never even considered having Alex get a flu shot, remembering her medical advice and praying God would keep him well. Thankfully, this approach has worked well, and Alex rarely gets sick. Moreover, we have limited his exposure to mercury, a known neurotoxin, which his nervous system certainly does not need.

Despite the CDC’s dire warnings of the dangers of flu, stating, “Influenza is a serious disease that can lead to hospitalization and sometimes even death,” we will not be getting flu shots this year. Even the CDC admits that the vaccine’s effectiveness depends on many factors: “How well the flu vaccine works (or its ability to prevent influenza illness) can range widely from season to season and also can vary depending on who is being vaccinated.” Certainly, I respect the decision of others to get vaccinated against the flu, but with no guarantees that that shot actually prevents flu and with the added potential dangers of thimerosal, I’m not willing to take that risk for Alex or myself. In the meantime, we follow the best advice my internist ever gave me for good health: “Plenty of rest, proper nutrition, and lots of prayer.” This sounds like a good plan to me.

“Lord, your discipline is good, for it leads to life and health. You restore my health and allow me to live!” Isaiah 38:16

Sunday, November 4, 2012

Eleven Random Things

1.  One of Alex’s new quirks is to blurt out types of foods suddenly and randomly. He’ll be sitting quietly, seemingly in deep thought, and suddenly say, “Mango,” or “Polish sausage,” or “Cupcakes.” Apparently, he spends a great deal of time thinking about food. If we ask him if he’s hungry, he’ll usually tell us that he’s not, he’s just thinking about food. Finding this random chain of thought interesting, I thought I’d similarly share some random things that have occurred to me this week, most of which have nothing to do with food—I’ll leave that to Alex.

2.  The one random thing that does have to do with food is Alex’s new love of “porridge.” I had mentioned in a recent blog entry that Alex has rediscovered the story Goldilocks and the Three Bears, which he likes me to read to him again. I think he’s amused that I can do three different voices for the bears—Daddy Bear’s deep voice, Mommy Bear’s medium voice, and Baby Bear’s squeaky voice. Apparently wanting to emulate the bears and Goldilocks, he decided that he would like to eat porridge, which took some research on my part to find what porridge is and whether he could eat it on his gluten-free, milk-free diet. The closest approximation I could find for porridge is a gluten-free oatmeal made with water instead of milk. While I wouldn’t touch the mushy stuff with a ten-foot pole, Alex seems to think he has a real treat in porridge, one of his new favorite foods.

3.  The past few weeks, Alex has taken up sleepwalking, which is a bit disconcerting because awakening to a six-foot-tall, half-asleep young man prowling in the hallway in the middle of the night is frankly creepy. Since we don’t want him tumbling down our rather steep stairs to the main floor, Ed and I have been sleeping lighter, listening for Alex to open his bedroom door and start his nightly jaunts. Fortunately, he’s docile and cooperative about being led back to bed, and all three of us are able to go back to sleep quickly afterward. We’ll just be glad when he gets past this phase.

4.  Another recent phase is Alex’s renewed interest in the Disney movie Shrek. When he was younger, Shrek was his favorite movie; in fact, I think Shrek is one of the few movies, other than the Disney cartoons that he watched when he was little, that he has watched in entirety and repeatedly. Perhaps feeling nostalgic, Alex has watched the Shrek movie trailers on You Tube many times the past few weeks. Every time, he finds them really funny, as if he’d never seen them or heard the jokes before. I think it’s sweet that just watching the short clips brings a smile to his face; how nice that something so simple makes him so happy.

5.  Harkening back to his younger days, Alex has also been asking about his childhood doctor. Although she retired a few years ago, Alex often mentions her because he felt a close bond with her during the nearly ten years she took care of him. Last month, I heard the sad news that she had passed away from cancer, which was hard for me because she had been instrumental in helping Alex deal with his various medical conditions and supporting us as his parents. She genuinely cared about her patients on a personal level and did everything she could to restore their health. I wasn’t sure how Alex would take the news of her passing, but when he asked me about her, I explained that she had gotten sick, died, and gone to heaven. Alex seemed to mull this over, satisfied that she was in a better place. However, he did ask if he could call her in heaven, and like Alex, I wish we could call her to let her know we’re thinking of her, and to be truthful, to get her medical advice occasionally.

6.  Speaking of phone calls, in my blog entry a few weeks ago “Woman’s Day Magazine,” I discussed how talking on the phone with the writer of the article, Marjorie Ingall, was amazingly easy, even though we’d never met. This week I read Marjorie’s blog entry “pam and alex” [To read her blog, click here.], in which she shares that she felt a similar comfort level in chatting with me. As she points, out, even though we differ in some key areas, we found these differences didn’t matter. We liked each other and enjoyed talking to one another. I had to laugh at her description of my blog as having “a whole lotta Jesus going on” and had to agree that I, like she, “felt comfortable instantaneously, two seconds into our first conversation.” And, Marjorie, if you’re reading this, you rock, too.

7.  One of the surprise benefits of having our family featured in the November issue of Woman’s Day magazine in the article “Caring for Alex” was that a close friend of mine from junior high who now lives in California saw the article and contacted me. Even though we haven’t been in touch for more than thirty years, we found common ground in our shared past and in our present day as mothers trying to do what’s best for our children. Guided by our faith and shaped by the difficulties our children face, we can now support each other through prayer and renewed friendship.  We’re both certain that God brought us together again; no randomness was involved here.

8.  This week, we were uncertain as to how Alex would react to Halloween and trick- or-treaters coming to our door. When he was little, Alex loved Halloween, dressing up in costumes I made for him, decorating pumpkins, and going trick-or-treating. As he got older, he enjoyed watching kids come to our house for treats. Since Ed had to teach on Halloween night, Alex and I were left to give out the goodies. Right before the designated trick-or-treat time, Alex suddenly had an anxiety attack and started saying repeatedly that he wanted “to be one, two, or three again.” I suppose he wished he were little enough to dress up and go trick-or-treating himself. Fortunately, he was able to pull himself together fairly quickly and then seemed to enjoy watching kids come to our door. It’s hard to be a little kid trapped in a young man’s body.

9.  On the other hand, Alex, who will turn twenty-one next month, participated in a rite of passage that delighted him as he voted for the President for the first time. With his interest in politics and Presidents, Alex has taken voting seriously and has participated in every Election Day since he turned eighteen and became of legal voting age. However, he had to wait until this year to have his chance to vote for the President. Watching his delight and pride in voting was truly a special event that made Ed and me proud as parents. With Election Day on Tuesday, we’ll see if his candidate wins, which will make his first Presidential election even more special.

10.  This week, we also encountered another calendar milestone that Alex usually anticipates happily—the change from Daylight Savings Time to Standard Time. With the changing of the clocks back one hour, we’re never certain how this will impact Alex’s sleep patterns. I always debate as to whether we should try to keep him awake longer or not. Fortunately, he made the decision for me, as he wound up staying up later because while he was waiting for Ed to come home from the Valparaiso University basketball game, he developed hiccups that kept him awake. He seemed not to be bothered by the hiccups, which was good, and Ed and I were surprised when he clearly asked a question (especially since lately he has limited his speech to only a few words often said quietly), “What was the score of the basketball game?” Maybe hiccups jolted his brain so that he could verbalize his thoughts better, or maybe he’s more alert when he stays up a little later. Whatever the reason, hearing him ask a good question was pleasant for us.

11.  And finally, this week, we found out that enrollment in the day program where we’re hoping to place Alex seems to be on hold even longer. Originally, we were told that they wanted a behavioral assessment and behavior plan in place prior to enrolling him. Now that the assessment and plan are nearly complete, we have been told that the day program currently has no openings.  While we still believe that this program will be good for Alex, Ed and I are convinced that the delay has a purpose to give Alex time to get better so that he’ll be successful once he gets there. I recently saw a quote that has helped me deal with my tendency to become impatient when I have to wait for things: “Faith is not just trusting God, but also trusting His timing.” I’m sure God has a plan, and we just wait for the right time.

 “And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.”  Romans 8:28

Sunday, October 28, 2012

While We Wait

Recently, Alex has developed some new routines, and we’re still battling with an old foe. Since all of these begin with the letter t, I thought I’d lump them together this week. The new routines involve Times Square, the Target Café, and therapy, while the old foe is the summer plague of thrush.

As I have mentioned in previous blog entries, Alex loves to watch videos on You Tube. Although he mostly watches country music videos, he also likes to watch clips from television game shows. The past couple of weeks, he has wanted to watch videos from various years of Dick Clark’s Rockin’ New Year’s Eve where they count down the seconds until the new year as the ball drops in New York’s Times Square. Considering Alex’s love of time, calendars, and holidays, I suppose his fascination with watching this annual celebration makes complete sense. In addition, the narrator of these videos also tells what the temperature in Times Square is on that particular New Year’s Eve, which is an added bonus for Alex, who loves weather.  Even though he has watched some of these videos several times, he gets just as excited watching the seconds wind down and the ball drop as the crowds in the videos do when it happened in real time. Moreover, even though Alex and I like Ryan Seacrest as a host, we’ve found by watching these old videos that no one rings in New Year’s Day like the late great Dick Clark.

Along with watching the countdown of the final minutes of each year, Alex has also discovered that he really likes the Target Café. Lately, about once a week, he and I have gone shopping at our local Target store with my mom. Since Alex just likes going places, he doesn’t seem to mind browsing through the store with his mother and grandmother. As a reward for his patience and good behavior, my mom treats him to a Sierra Mist soft drink and a bag of Lay’s potato chips from the Target Café at the end of our shopping trip. Besides enjoying his snack, Alex seems to like sitting in the café and watching people go by. Last week, Ed and I took him to Target, and as we were nearing the end of our shopping, Alex started chanting something softly. Ed couldn’t figure out what Alex was talking about, but I knew what he was saying that he wanted—“Target Café, Target Café, Target Café.” Hence, Ed was introduced to the ritual of stopping at the Target Café at the end of a shopping trip.

The third new routine is therapy--behavioral therapy, to be more precise. We have done a variety of therapies with Alex over the years, including speech therapy, occupational therapy, sensory integration therapy, Floortime therapy, cranial therapy, visual therapy, music therapy, nutritional therapy, and chelation therapy. However, behavioral therapy is new for us because until about a year ago Alex’s behavior was mostly quite good. This summer, we began searching for behavioral therapists with experience in autism, and we were fortunate to find an agency in a nearby town that handles people with autism and that had openings for new clients. Finding a therapist with autism experience is tricky enough, and those who do have autism training often have so many clients they cannot take on any more. One of the blessings of Alex qualifying for state funding this summer was that behavioral therapy is covered by his Medicaid waiver services. Not only are we fortunate to have found a behavioral therapist who works well with Alex, but also the state pays for this valuable therapy.

When we started behavioral therapy in August, most of the work was spent assessing Alex’s behavioral issues. His therapist and her supervisor who also observed Alex and interviewed Ed and me felt that many of his actions were attention-seeking behaviors. For example, if Alex wanted our attention, he found it easier to grab our arm than to tell us what he wanted. After several weeks of observation and gathering data, his behavioral therapist developed a behavior plan. Now that the plan has been written, she has been able to focus on working with Alex one-on-one on a weekly basis at our home. Alex eagerly anticipates the sessions with his sweet and enthusiastic therapist Melissa, who also seems to get a kick out of working with him. While she develops social stories, plays games, and talks with Alex, I sit in another room and try to eavesdrop on their conversations. Apparently, Alex is funny during their time together because I frequently hear Melissa laugh in amusement at his comments. She seems to bring out the best in him because he has been remarkably cooperative and well behaved throughout their sessions. I suspect Alex is happy to have someone other than his parents and grandparents to spend time with him. We’re pleased that Melissa is helping Alex develop his social skills and that he enjoys working with her so much.

While the new routines have been welcome, the hanging on of the annoying fungal infection thrush has been frustrating. Alex was first diagnosed with a yeast infection in and around his mouth in June, and we’ve been trying to clear up the thrush and cheilitis ever since then with anti-fungal medication. After weekly doses of the antifungal drug Diflucan didn’t seem to be clearing up the infection completely, his family nurse practitioner put him on daily doses for two weeks. Although he seemed better, a few weeks later, the symptoms flared up again. Last Saturday, we took him to our local CVS Pharmacy’s Minute Clinic, where a very sweet and sympathetic nurse practitioner confirmed my mother’s instinct that he again had thrush and cheilitis. She gave him two more doses of Diflucan and recommended we take him back to our family nurse practitioner.

On Tuesday, we had an appointment with another family nurse practitioner, who understood our frustration with trying to get rid of the yeast overgrowth and concerns that for Alex’s well being. She decided to do a culture by swabbing his mouth, gave us orders to have a blood test done to see if, indeed, his candidiasis, or yeast infection, is systemic, and prescribed a month of daily doses of Diflucan. We were pleased that she took such an aggressive approach, which is what we wanted. Although we’re curious as to what the test results will show, we’re pleased that Alex seems to be responding well to the medication as his symptoms are improving. We pray that this run of Diflucan will rid his body of the yeast overgrowth that irritates his mouth and throat, making him irritable. Moreover, we believe that once the yeast overgrowth abates, we will see great improvement in Alex overall. Once again, God gives us patience as we wait for Him to do the true healing, but like the eager crowds in Times Square on New Year’s Eve, we can’t help but count down: “Five, four, three, two, one.”

“For I am waiting for you, O LORD. You must answer for me, O Lord my God.” Psalm 38:15

Sunday, October 21, 2012


Since Alex came home from the hospital in June, he wants to be with Ed or me almost constantly. I think he is making up for lost time, the days he spent in the hospital where we could only see him for an hour or two during visiting hours. Our presence seems to reassure him that he is, indeed, finally home. In fact, the rare times that he is alone, he’ll come looking for us and ask us to “visit,” clearly a reference to his hospital stay. During the months leading up to his hospitalization, he wanted very little to do with me, which was sad and confusing, as he would inform me, “Mommy is leaving now,” which was essentially telling me to “bug off” and leave him alone. Instead, he just wanted Ed to take care of his needs, which I figured was some type of developmental phase where he needed to separate from his mother and identify with his father. Nonetheless, I missed him for a long time.

Now, I spend several hours a day with Alex at his request. Most of the time, we just sit together--sometimes he’s sitting and thinking while I’m reading; other times, he has me read aloud to him. While he used to spend hours reading alone, I think the medications to keep him calm also may make focusing on reading difficult, so he prefers listening to me read instead. Also, I think he enjoys this as an activity we can do together, rather than the solitary act of reading. Sitting with him is an interesting experience because I gain insights into how his mind works as he comments on various things. For example, he often blurts out random foods: guava, cupcakes, salami, bananas, meatloaf, etc. Most recently, he’s added porridge to the list of foods, inspired by his recent revived interest in the story of Goldilocks and the Three Bears, I’m sure. I suppose he’s frequently thinking about what he wants to eat because he’ll also say the names of random restaurants: Noodles and Company, Culvers, The Coop, Martini’s, etc. Although the food blurting continues throughout the day, the restaurant blurting usually only happens in the afternoon, prior to dinner. I guess if he doesn’t have a lot to occupy his mind, food is as good a topic as any. Alex has always shown an interest in food, watching the Food Network Channel from the time he was a toddler and referring to all of their chefs on a first-name basis. Fortunately, his appetite and willingness to eat a variety of foods have always been excellent, and he has not been affected by the dreaded medication side effect of potential weight gain, maintaining his slender, lanky build.

Another activity Alex requests is making random lists. He’ll give me a topic, such as animals, NASCAR drivers, or famous people’s ages, weights, and heights. Sometimes, we’re able to come up with the information on our own, and other times, we have to do Google searches to get the data he wants. Yesterday, we worked on coming up with an animal for every letter of the alphabet. I was amazed how quickly he could come up with the names of animals, often unusual ones, such as armadillo and zebu, especially since he’s never shown a great deal of interest in animals, unlike most children. The only letters that stumped us were u, v, and x, which led us to a Google search for those elusive animals to complete our alphabetical list.

Besides Google searching, we put my laptop computer to good use for other shared pastimes. Alex has always enjoyed online shopping, especially searching for books and gadgets on Amazon. Lately, he’s been checking out everything from NASCAR driver banners to hang in his bedroom to books about time to talking clocks. Fortunately, he had not spent all the money in his Amazon account that his aunts and uncles gave him last December for his birthday and Christmas, so he’s been able to purchase many of these items his heart desires. Of course, he likes to comparison shop, making sure we get the best deal, and this allows him to savor the experience even longer. In addition, I always make him wait twenty-four hours before making his final purchase to make sure that’s how he wants to spend his money, which is another way to make the shopping fun last.  Another favorite website we explore together is You Tube, primarily to watch music videos of his favorite singers. This week, we’ve watched nearly all of country music singer Shania Twain’s videos, and I introduced Alex to one of my guilty pleasures, videos from the 1970’s television show and its manufactured musical group, The Partridge Family. While Ed will probably think I’m corrupting Alex by exposing him to this kind of pop music, I feel Alex needs some relief from the Bob Dylan music that he listens to with Ed.

At some point, Alex’s need to be with Ed and me almost constantly will fade, and we will respect his wishes to be alone again. However, until that time, we will stay close at hand, entertaining him and just being there for him. Sometimes, I will leave him for a few minutes to get something or do laundry, only to find he has followed me, waiting patiently for me to rejoin him. Yesterday, as I was putting clothes in the washer, he followed me down the stairs and asked me to come stay with him. After I started the washing machine, I followed him and honored his wish to join him, which made him happy. Wondering when he thought he might get tired of having me around, I asked Alex how long he’d like me to stay, thinking he’d give me some exact amount of time. Without hesitation, he replied, “Stay forever.” Oh, Alex, I wish I could stay with you forever; I just pray that I’ll be with you as long as you need me.

“And I am sure that when I come, Christ will richly bless our time together.” Romans 15:29