Autism and Medications

After the tragic killings in December at Sandy Hook Elementary School, the media speculated upon the possibility that shooter Adam Lanza had an autism spectrum disorder as well as reporting what medications he might have been taking. While the autism community quickly reacted by issuing statements adamantly denying a link between autism and planned violence, some discussion arose linking medications to violent behavior. Some parents who strongly oppose medicating their children with autism circulated information that cited several instances where school shooters had been taking psychiatric medications. A writer and autism mom whom I respect and admire, Teresa Conrick, posted an article on the Age of Autism website entitled “Pharmagunddon: School Shooters and Psych Meds” detailing various instances in which school shooters were allegedly taking psychiatric medications at the time they committed their heinous crimes. [To read this article, click here.] While I appreciate the thoroughness of her research and her invitation for the reader to “be the judge,” I have trouble agreeing with the implication that the medication caused the violent behaviors.

In a college course dealing with statistics, I learned the adage, “Correlation does not imply causation.” While these individuals may have been taking psychiatric medications, the behaviors that led doctors to prescribe these drugs more likely impacted the individuals to a greater extent than the medications themselves. Perhaps the medications they were taking were not the best for treating their conditions, or they may have needed different dosages than they were taking at the time.  In addition, some medications such as SSRI’s must be taken for a few weeks before symptoms improve, which could be a factor. Moreover, they may not have been compliant about taking the medications as directed, rendering them useless.  Too many variables exist to make judgments as to whether these drugs made people more susceptible to engaging in violent behavior.

Although I understand parents’ reluctance to put their children on medication, in some cases medication may be necessary for the well being of the children. If a child has diabetes and needs insulin, the parents would be negligent not to make certain the child received that medication.  In autism, co-morbid conditions, such as obsessive-compulsive disorder or anxiety, may benefit from medications that help the brain and the rest of the nervous system function better.  While I understand that some parents prefer to try vitamins, supplements, and other less drastic interventions, sometimes more is needed to address problem behaviors. I’ve noticed that some of the most vocal parent critics are those whose children are still young; until the child has gone through adolescent hormonal changes that can greatly impact behavior, from our experience, I would advise waiting to rule out medications completely.

From the time Alex was diagnosed with autism at four years of age, we began using biomedical treatments to help improve his various neurological issues. He became quite adept at swallowing pills at an early age, and he took as many as four dozen supplement pills each day, under the direction of our family doctor who specialized in nutrition. From vitamins to minerals to amino acids to essential fatty acids, Alex took whatever he needed to make his body work better. In addition, we put him on a strict gluten-free and casein-free diet that he maintains even today to address his food sensitivities and allergies. We treated him for yeast overgrowth in his digestive system, and we did chelation therapy to rid his body of toxins that had accumulated. Whatever interventions he needed, we pursued in hopes of making him as healthy as he could be, and we hoped to avoid putting him on medications. However, when his OCD behaviors became quite upsetting to him at age eleven, his doctor felt he would benefit from taking the SSRI Prozac. The improvements in his anxiety and behavior, such as frantically checking clocks to see what time it was and slamming doors in a ritual before bath time, came as a great relief to him and to us. Clearly, he needed his serotonin levels regulated in order to function better and stay calm.

Last year, when we had to hospitalize him in the behavioral medicine department for severe anxiety and aggression, his psychiatric nurse practitioner believed that after nine years, Prozac no longer worked for Alex. During his hospital stay, she tried a variety of medications at various doses until finally reaching a combination that kept him calm and prevented him from the dangerous aggressive meltdowns we had been facing for months. Currently, he takes the SSRI Zoloft along with mood stabilizers, an anti-psychotic drug, and sedatives. While we must monitor his behavior and watch for side effects as well as have regular blood tests to check his levels, we are pleased with the significant improvements we have seen while he has been on these medications.  (Fortunately, he is not taking any of  “The Top Ten Legal Drugs Linked to Violence” listed in Teresa Conrick’s article.)

Do we worry about the long-term effects of these medicines on his system? Certainly! Would we prefer that he not have to be on medications and deal with some mild side effects? Absolutely! Are we hopeful that he will eventually be able to wean off these medications and go back to taking supplements instead? Of course! However, at this point with Alex’s current issues, medication has taken away the behaviors that made him a danger to others and allowed the three of us to live peacefully.  Until God heals Alex—and I know He can—we are thankful for the expertise of Alex's psychiatric nurse practitioner and for the medications that help him overcome extreme anxiety so that he can be his happy, docile self.

“But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2

Mama's Boy

Life with Alex is never dull. When he begins doing something new, we sometimes find ourselves puzzled and even frustrated. Sometimes, however, he does new things that amuse and fascinate us. Lately, he’s engaged in some entertaining behaviors that show he’s more mentally alert and involved in the world around him. In my blog entry last week, I described all the questions Alex has been asking, trying to figure out heaven and God. In addition to seeking answers about the afterlife, Alex has been inquiring about my future plans. A couple of weeks ago, Alex started asking me when I will retire from my part-time job as a teacher. He understands the concept of retirement because he knows that my parents are retired, and I guess they have made this stage of life seem quite appealing. Although I have explained to Alex that I’m not really old enough to retire yet, he, nonetheless, keeps pressing me for an age when I plan to quit my job. Since he didn’t seem to appreciate my vague answers, I fell back on one of his favorite lines, “Wait and see,” which seemed to satisfy him.

This past week, however, he decided to come up with a new plan for my future since retirement doesn’t seem imminent. Alex began asking me if I could have a baby. This question took me by surprise not only because I’m too old to have a baby, but also because Alex has never shown any interest in having siblings. Unlike most kids, he has never asked to have a brother or sister, and he has reveled in his only child status. Since my pregnancy with him was high-risk, due to the diagnosis of the bleeding disorder ITP when I was pregnant with him, I had been advised not to have any more children. Once Alex was diagnosed with autism, Ed and I were glad that we only had Alex to raise since he required so much time and care.  Alex’s lack of interest in having a little brother or sister made this choice easier. For him to begin asking for a sibling after all these years seemed rather odd until I began analyzing his motives.

One possibility for Alex’s sudden desire for a sibling may be his fascination with little kids. When we take him places, he loves watching small children, and he especially likes hearing their “little voices.” The other day, he asked me if he could babysit, which is a sweet but misguided idea. Although Alex would like to take care of little kids, he’s not even capable of taking care of himself. I simply told him that babysitting is hard work, which seemed to deter him from that notion. Another possible reason for his wanting to have a sibling may come from his recent request to get bunk beds. I have no idea why he wants bunk beds when he is afraid of heights and slightly claustrophobic, making neither bunk particularly appealing to him.  Ed had told him that he and his brother, Alex’s Uncle John, had bunk beds when they were boys, and perhaps Alex wanted to share this experience. We then explained to Alex that he didn’t need bunk beds because he doesn’t have a brother. Maybe he thought that if he had a brother, we would get him the bunk beds he wants.

Probably the most plausible reason, however, that Alex wants me to have a baby is that he is looking for reasons for me to be home all the time instead of going to work. Along with his retirement questions, he asks me every night if I’m “going to BF [the shortened name of the school where I work]” the next day, and he seems to look forward to weekends, knowing that I’ll be home. In addition, Ed tells me that Alex asks frequently while I’m at work in the morning when I will be home. He does the same thing in the afternoon, asking me when Ed will be home from work; he just prefers to have both of us home. Considering that last year, he often didn’t want me around him, even bluntly saying, “Mommy is leaving now!” his noticing my presence or absence is an improvement. However, I will be glad when he seems a little less attached to me, but I think this may be some separation anxiety stemming from when he was hospitalized last spring. Despite Alex’s wishes, I will not be retiring any time soon, nor will I be having a baby just so he can babysit, get bunk beds, or have me home all the time. There are limits to my maternal devotion to him. Besides, knowing Alex, he’ll be moving onto a new interest soon, and he will be glad again to be an only child.

“If you honor your father and mother, ‘things will go well for you, and you will have a long life on the earth.’" Ephesians 6:3

Alex's Questions

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As I explained in my last two blog entries, “Telephone Tracking” and “Telephone Tracking Two,” I’ve been spending time on the phone lately, trying to find information regarding Alex’s blood tests to monitor recent medication changes and his Medicaid benefits. Fortunately, my tenacity paid off, as we received a letter from Medicaid this week stating that Alex still qualified and would continue receiving his disability benefits. This came as a huge relief that his file had been updated correctly. Also, I called his psychiatric nurse practitioner’s office this week to get the results of his blood tests, only to discover that they had never received the test results. Then, I had to call the lab to request his results be faxed (or faxed again, as I’m not sure what had happened) to the nurse practitioner’s office. Once they received the results, her nurse called to tell me that the results were normal and that he should continue on the current medication dosages. Again, this news was a blessing because he is responding well to the slight increases in medication, and we were thankful that his blood tests indicate no problems with these changes. Although I would have preferred that gaining information about his benefits and health had not required so many phone calls, I’m pleased that in the end, the news was good.

While I’ve been on the phone acting as Alex’s personal assistant, he’s been busily coming up with questions for me to answer. When he first came home from the hospital this summer, he seemed to be in a mental fog, his senses dulled by the medications needed to keep him calm. Over the past several months, he’s gradually emerged from this drowsy state, and we’ve been pleased to see his personality and curiosity return. In fact, when he was little, Ed used to call Alex “Mr. Curious” because he was always checking out things and asking questions about them. We enjoy his inquiries because not only do they show he’s alert and aware, but they also give us a glimpse into how his mind works.

One area of his questioning has to do with the past. He has an interest in things that happened before he was born or things he can’t remember because he was too little. As I’ve explained in previous blog entries, Alex qualifies everything by numbers, so calendars and clocks and dates are very important to him. The past few weeks, he’s been asking about when various businesses in town opened. Specifically, our town has a new hospital that opened in August, and Alex wanted to know more about the old hospital it replaced, especially since he was born in the old hospital. Fortunately, I was able to find some information online about the old hospital and when it opened, which was exactly what Alex wanted to know. In addition, he has had a recent fascination with the part-time job I had while I was in college as a waitress at the Big Wheel Restaurant. Not only did he want to know the exact dates when I started and stopped working there, but one day he also wanted me to tell him everything that was on the menu. This seems to be another nostalgic exercise for him because although the Big Wheel closed a few years ago, Alex remembers going there when he was younger. To enhance his trip down Memory Lane, he has been asking me to fix one of the special dishes from the Big Wheel, the Wheel Steak.  Perhaps eating a familiar dish from the restaurant jogs his memory so that he can remember the times he spent at the Big Wheel. Now I need to teach him about leaving a tip for the waitress.

Besides reminiscing, Alex has also been spending a lot of time thinking about theological concepts, but, of course, they reflect his unique perspective. Lately, he has a great deal of curiosity about what God can do, where heaven is, what it will be like, and what we will be like when we get there. Although I have no good answers to his good questions, he has been satisfied when I have told him that only God knows or that he’ll have to wait and see when he gets to heaven.  Since I’ve been intrigued by some of the questions he’s posed, I’ve been jotting them down whenever he asks them. Here are some of Alex’s recent inquiries:

“Has God used the graphing calculator before?”

“Does God know all the pi digits?”

“Where are heaven and hell?”

“What is the address for hell?”

“How long does it take to get to heaven?”

“Can you call heaven? What’s the phone number?”

“Is there a Heaven.com?”

“What road goes to heaven?”

“Are there clocks in heaven? Will there be time in heaven? Do they have stopwatches in heaven? Do they have timers in heaven?”

“How much will we weigh in heaven?”

“What will our heavenly bodies look like?” (after I told him we’d have new bodies in heaven in response to his question about weight in heaven)

“Will you have birthmarks in heaven?”

“What color will your eyes be in heaven?”

“What voice will you have when you get to heaven?”

“Can you sleep when you get to heaven?”

“Will people have tempers in heaven?”

Besides all of his interesting questions about God and heaven, Alex has also asked some things that make me wonder how his mind works. One day, he suddenly asked, “Do dogs have better memories than cats?” Even more puzzling was the day he apparently wanted to try parenting and asked, “Can you [meaning “I”—he still reverses pronouns] pretend to have a baby?” As he has been more alert, he’s paying more attention to what people are saying in person or on television, which has made him ask about words he doesn’t know. For instance, while watching the television show The Big Bang Theory the other day, he heard one of the characters use the word befuddled and asked us what that meant.  I was tempted to tell him that I was befuddled when he asked about pretending to have a baby, but decided against that. Finally, another question he’s frequently been asking me lately is when I’m going to retire. I’m not sure if he thinks I’m old, or if he’s just looking forward to my being home all the time.  I guess he figures that if I retire, that will free my time to make phone calls on his behalf and answer all his questions about life. In the meantime, I’ll keep working at the balancing act of my part-time teaching job and my full-time job of being Alex’s advocate, teacher, and mom, which is my favorite job of all, especially when he entertains me by asking questions that make me think about all the good things we have ahead when we actually know what heaven will be like.

 “Call to me and I will answer you and tell you great and unsearchable things you do not know.” Jeremiah 33:3

Telephone Tracking Two

In last week’s blog entry, I described the various phone calls I made to Alex’s psychiatric nurse practitioner’s office and the laboratory where we have his blood tests done, trying to make arrangements for a blood draw. After talking with nurses and laboratory technicians back and forth, we were finally able to straighten out the details. As they say, “All’s well that ends well,” and the tests came off without a hitch. Thankfully, Alex cooperates nicely with blood draws, and yesterday we were able to do the follow-up tests easily and quickly. Of course, I decided to make a quick call to the lab before we went, which made things go even more smoothly, as the lab technician had everything arranged in advance before we arrived. St. Anthony’s Chesterton Health and Emergency Center has been a godsend to us because all of their staff are kind and pleasant and efficient. Now, we wait for the test results to see if Alex’s increased medication levels are within proper levels. I’m betting that I will have to call his nurse practitioner’s office to get the results this week, but since my telephone skills are sharp, I will be prepared.

In addition to checking on Alex’s medical tests, I have also been dealing with Medicaid by phone the past couple of weeks. Before Christmas, Indiana Medicaid sent me a letter requesting that I fax a copy of Alex’s financial records to them so that they can make sure he is still eligible. Although Alex has limited financial resources, he has a handful of shares of Disney stock his aunt and uncle gave him as a Christmas present a few years ago, and he has a checking account that Social Security wanted him to have as a place to deposit his disability checks. After sending a couple of disability payments to that account, Social Security decided—no surprise to us—that Alex wasn’t capable of managing his financial affairs and named me as his representative. Consequently, his checks are deposited in my checking account so that I can pay for his expenses, and his checking account basically goes unused.  Nonetheless, Medicaid needs to establish that Alex has minimal assets, and they require that I send them statements showing the value of his stocks and the balance of his checking account.

The day after I received the letter from Medicaid, I faxed copies of the financial records to them, as they requested. Imagine my surprise and frustration to receive a letter this month stating that Alex’s Medicaid benefits would be discontinued as of February 1^st due to my “failure” to submit his financial records. Although we have private health insurance that pays for most of Alex’s medical expenses, Medicaid acts as a secondary health insurance for him and pays for his behavior therapy. In the future, Medicaid will pay for his support services, including the day program we hope will enroll him and transportation there, as well as eventually a supported living program. Losing these benefits would definitely have a deeply adverse effect on Alex’s future and would make the hours I spent filling out paperwork and pleading his case meaningless. I knew that I was going to have to intervene right away to make sure Alex didn’t lose these valuable resources.

As I pulled the financial records from his files, I also found a document with a time and date stamp proving that I had faxed the information they had requested in a timely fashion last month. I decided to fax all of these forms once again to prove I had not “failed” to submit them. In addition, I called Medicaid to attempt to straighten out this mess.  After waiting through the options menu and spending some time on hold, I spoke to an agent and explained what had happened. After going through his files, she discovered that they had, indeed, received the information I had faxed last month, but no one had bothered to enter it into the computer. She assured me that she would take care of updating his files, and there shouldn’t be a problem. A few minutes later she called me back to tell me that Alex would not be eligible based upon his resources. I asked her to explain that because I knew that he had the same, if not less, finances that he had when he applied. She told me that he must have $1500 or less. After adding his accounts again, I knew that he had less than the amount she stated, but decided not to argue with her and thanked her for her help.

Concerned that this matter still was not resolved, I decided to call again this week to make sure that Alex’s file had been corrected. Once again, I waited to speak with an agent, who pulled up Alex information and said that all of the data needed was there and that he was under the limit for resources. However, no one had bothered to send this information on to the state, so she assured me that she would take care of forwarding this information. As I did the last time I called the Medicaid office, I made notes of what they told me in case I need this information for future reference. Still not convinced that they have Alex’s information accurately recorded and sent to the proper department, despite their assurances, I will once again call this week to make sure his benefits will not be jeopardized by the careless record keeping of others.

As someone who takes organizing information to extremes, I have little patience with those who do not keep good track of important records, especially when my son’s future could be jeopardized. In talking with other parents, apparently our experience is not uncommon. Parents of special needs children have enough responsibility taking care of their children’s needs without having to supervise agencies who should be helping parents instead of making their lives more difficult by failing to keep track of information and accusing the parents of being noncompliant. I’m sure we will work out this issue soon, and I’m glad I have the organization and tenacity needed to accomplish this task. However, I’m still working on patience. I pray that God will help me with that so that I will learn to wait in peace instead of frustration, especially since I have at least two phone calls to make this week. As I make sure that Alex’s medical and financial needs are met, I’ll simply be fulfilling one of my roles as an autism mom—Alex’s personal assistant.

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

Telephone Tracking

In a blog entry from April 2011 entitled “Survivor,” [To read this entry, click here.] I described my love of reality competition television shows, such as The Amazing Race, Dancing with the Stars, and The Apprentice, and I suggested a challenging season for a perennial favorite—Survivor: Autism. For this season, contestants would have to complete tasks autism parents regularly face, such as fighting insurance companies for benefits and searching for the best therapies and interventions to help their children, as well as patiently dealing with their children’s unusual behaviors, including watching videos repeatedly. This week, I realized that one more challenge could be added to my proposed reality show: "Telephone Tracking," in which contestants armed only with a phone try to get needed information as quickly as possibly without losing their tempers or their sanity.

One of these tasks would involve tracking down medically related information. About a week ago, I called Alex’s psychiatric nurse practitioner’s office with concerns that he was jittery upon awakening, like someone who had drunk too much coffee. He would physically shake and tell us that he was “nervous.” As with many medical offices, to speak with a human, I had to listen first to the recording that warns the caller, “If this is a medical emergency, please hang up and dial 911” before I could speak with one of the nurses. After explaining Alex’s condition, the nurse relayed the message to the nurse practitioner, and the nurse called me back promptly, which I appreciated. Thinking that Alex’s bedtime medications were not carrying him through the night until his morning medications became effective, his nurse practitioner decided to increase slightly two of his bedtime medication dosages. This change made complete sense to me, and I was glad she was willing to make this adaptation without needing to see Alex first. To monitor the effects to these slight modifications, she also wanted him to have a blood test after one week to check the levels of these two drugs to make sure they were within proper ranges. I asked the nurse to send lab orders to the lab where we have taken Alex the past several months to have blood draws, and she told me she would take care of this.

Because my goal is to keep things always moving smoothly for Alex, I decided to call the lab a few days ahead of the blood draw to make certain that they had received the orders from the nurse practitioner’s office. This lab test requires fasting, which meant that we would be taking Alex as soon as he awakened and before he took any of his morning medications and before he’d had anything to eat. I didn’t want us to get to the lab and have any paperwork confusion while we were also dealing with a hungry kid in need of his medications. When I called the lab, they checked through the records and did not have orders for a lab test for Alex, so I had to call his nurse practitioner’s office again, this time armed with the phone number of the lab. The nurse told me she would check his file and call me back. Once again, she returned my call quickly and informed me that they had sent the orders to the wrong lab. I asked her to send them to our chosen lab, and she assured me that she would do so. After waiting a few hours, I once again called the lab to see if they’d received the orders, and they told me that the nurse practitioner’s office had faxed them that afternoon.  So, after four phone calls, we seemed to have everything straightened out for Alex’s blood tests.

On Wednesday morning, we waited for Alex to awaken so that we could take him immediately to the Chesterton Health and Emergency Center for his lab work. Once we arrived, we were pleased to see that we were the only ones in the waiting room, and Alex happily watched the big screen television with Ed as I completed the necessary paperwork with the registration clerk. As she was typing in the information, she asked me, “Is his doctor’s office open right now?” This made my stomach turn, as I suspected some crucial piece of information was missing. I told her that I knew his nurse practitioner was likely at the hospital doing her rounds in the morning rather than being at her office. Then I asked why she needed to call, and she said that the office had failed to provide a diagnosis code for the testing, which insurance would need. Immediately, I told her that his diagnosis is autism, which is code number 299.0. She still seemed a bit hesitant, and I more assertively told her that every test we had done there had been under the 299.0 diagnosis. Apparently, I was convincing because she went ahead and completed the registration process without calling the doctor’s office.

After that, the lab technician called us back to do Alex’s blood draw, and he, as he always does with lab tests, handled the procedure amazingly well, calmly sitting still the entire time. Moreover, he didn’t even flinch when the needle went in his vein. The lab technician was efficient and pleasant, and we were relieved to have that task behind us. One surprise in all this, however, was that they told us his nurse practitioner wanted the test repeated in a week, which her nurses had not conveyed to us in the four phone calls I had with two of them.  And so, we will do this again later this week, and hopefully Alex will be just as cooperative as he was last week.  On a positive note, the change in medication seems to be helping Alex in the morning, so the efforts I’ve made through the various phone calls have been worth my time. Also, the lab has the orders for the upcoming test, so I won’t need to make phone calls regarding that. However, I’m betting that I will have to call the nurse practitioner’s office to get the test results. It’s a good thing my telephone communication skills are polished so that I can track down the information I need to help Alex. I realized this again later this week when I received a letter from Medicaid stating that Alex’s benefits would be discontinued because of my alleged “failure” to send them financial records they needed. This put my phone skills and patience to the test once again, but that’s a story for next week’s blog. To be continued…

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.” Matthew 7:7-8

New Year's Resolution

This past week, as we celebrated the new year, 2013, annual discussions about people’s resolutions arose in the media repeatedly.  Indeed, the beginning of a year seems to be a good time to break old habits and become a better person. My good friend and fellow mom blogger [To read her blog, Real Housewife of the Bluegrass, click here.], K. C. Wells wrote a terrific entry this week on this topic that made me think about my own goals for 2013. Touched by the tragic loss of lives at Sandy Hill Elementary, she writes about worrying less about her to-do list and becoming “more mindful” in how she interacts with her family. One of her comments especially resonated with me, “Someday, my kids aren't going to remember how many things I accomplished in any given day or how clean their rooms were.” She goes on to give examples of the things she hopes her children will remember—the good times spent together and the values she instilled in them.

In raising a child with autism, too many times I get caught up in my to-do list, just as parents of typical children do. However, my list over the years has consisted of researching new treatments, finding various therapists, filling out countless forms to get services, planning homeschool lessons, and comparing notes with other parents. Over the years, I have found myself telling Alex, “Just a minute, Mommy is almost done” as I complete one of these tasks before doing something he has requested of me. Although I’m sure learning to wait has been a good lesson for him to learn, I have often felt guilty that I was preoccupied with other concerns when I should have just focused on spending time with him.

In addition to my duties as an autism mom, I have tried to keep our home neat and organized. While I think that keeping the house free of clutter helps keep my mind uncluttered, I know that my fears of what other people think of me probably motivate my need to clean even more. The prideful side of me would want others to think, “She has a child with autism and still manages to keep a neat house!” In the tumultuous times, when I feared we might need help from the police or paramedics to help calm a hysterical Alex, I kept an especially organized house, never wanting these people to think, “No wonder her kid is out of control; did you see what a mess her house is?” However, probably the biggest motivator for keeping things neat has been my need to find rapidly something Alex decides he wants, knowing that he may become upset if I can’t find it as quickly as he’d like. While all of these reasons are valid, I still put more pressure on myself than anyone else expects of me, and I need to get off my case.

When I was growing up, my mom’s priority was spending time with her three children—reading to us, talking with us, playing games with us, and refereeing our arguments. Although our house was clean, neatness was not as important. Mom would often say, “I can be neat, or I can be nice.” As kids, we were thankful that she chose the latter because we didn’t care about being neat; we preferred her pleasant company to having an immaculate house. Hanging in the kitchen of the house where I was raised, she still has a plaque with the poem “Excuse This House, “ which reads as follows: 

“Some houses try to hide the fact
That children shelter there.
Ours boasts it quite openly,
The signs are everywhere.

For smears are on the windows;
Little smudges are on the doors.
I should apologize, I guess
For toys strewn on the floor.

But I sat down with my child,
And we played and laughed and read
And if the doorbell doesn’t shine,
His eyes will shine instead.

For when at times I’m forced to choose
The one job or the other,
I’d like to cook and clean and scrub,
But first I’ll be a mother.”

With my mother as role model, this year I’m going to remember that my primary role in life is to be Alex’s mother. Instead of worrying about my to-do list, I’m going to start focusing on my to-be list, enjoying the moment at hand, knowing that eventually things will get done. Together, Alex and I will laugh as we watch episodes of his favorite show, The Big Bang Theory, and my favorite show, The Middle. I’ll gladly read aloud his beloved Veggie Tales’ book Time for Tom and exaggerate all the voices in Goldilocks and the Three Bears to make him smile. Whenever he asks me to “tuck you in,” I’ll be pleased that my wrapping him in blankets makes him feel secure. We’ll look up things together on Google, satisfying his curiosity while giving me a glimpse into how his mind works. And we’ll watch over and over again his favorite You Tube videos showing the New Year’s Eve ball drop in Times Square in New York City, counting down as though it were new each time. Perhaps watching that New Year’s Eve tradition will remind me how precious time really is and how grateful I am to be able to spend time with Alex. Now that’s a resolution worth keeping.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19

Christmas Gifts

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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

The Tragedy of Sandy Hook

Since the December 14^th 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

Twenty-one

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Today is Alex’s 21^st 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 21^st 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

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

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

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