Testimony

Alex’s comment came out of the blue recently when we were just sitting together in companionable silence: “Mommy talks too much.” Not certain that I’d heard him correctly, I asked him what he had just said. “Mommy talks too much,” he repeated, grinning in a way that either meant he was teasing me or that he was pleased that he’d conveyed what he’d been thinking. His remark made me laugh because I knew there was no malice intended; in our house, I am by far the chattiest one.

What Alex doesn’t know is that besides all the verbal conversations I have with him and Ed, I often speak silently to God throughout the day. From the moment I roll out of bed in the morning until the last few minutes before I fall asleep at night, I thank and question God all day long. From thanking God for the loved ones in my life to asking Him to take care of them to requesting patience in dealing with them at times, I like to keep our lines of communication open at all times.

Since Alex was diagnosed with autism seventeen years ago, most of my prayers have focused upon him: “Please take care of Alex.” “Please heal Alex.” “Please let Alex be all right.” “Please make Alex better.” “Please keep Alex safe.” “Please show us how to help Alex.” “Please give us strength and patience to deal with Alex.” With my constant prayers requesting help, God probably agrees with Alex that I talk too much.

However, I do try to balance my asking with gratitude: “Thank you, Lord, that Alex had a good day.” “Thank you, God, that Alex is doing better.” “Thank you, Lord, that Alex is happy.” “Thank you, Lord, for helping us with Alex.” “Thank you, God, that we can afford to provide Alex with what he needs.” “Thank you, God, for Alex.”

When Alex was fifteen, we were going through a difficult phase with him, and Ed and I felt overwhelmed as to what we needed to do. After that stage had passed, we were explaining to a psychologist who was evaluating Alex that we felt this time had been one in which Alex had not made a great deal of progress. He sympathetically commented that we had been “in survival mode” and could only deal with the big issues because that’s what needed to be addressed at the time.

During that phase when Alex first showed aggressive behaviors that physically and emotionally drained us, I remember trying a new tactic with God: bargaining. “Lord, if you will just make Alex better, I will serve You by helping others.” As Alex’s behavior did not improve, and at times even declined, I repeated my promise to God, reminding Him that I had a plan if He held up His end of the deal. Still, Alex’s behavior seemed really no better. I went into stronger persuasive mode with God: “If You make Alex better, I’ll have more time and energy to help other people.” Yet, Alex continued to sap our energy with meltdowns. Frustrated and upset with our situation, I felt as though God were ignoring me. I wished that He would speak to me as He did the prophets and explain why things were not getting better, at least as far as I could tell.

After weeks and months of seemingly unanswered prayers, I finally realized something important: God had a plan, and I needed to accept it. Instead of worrying about Alex, I needed to trust that when the timing was right, God would make Alex better. Instead of whining about my situation, I needed to find peace that everything would be all right. Instead of negotiating about how I could serve God, I needed to find a way to help others in the situation where I was right then. While I couldn’t serve God in obvious ways by going on mission trips or teaching Sunday school or volunteering in the community, I could find things to do while I waited for Alex to get better. I could pray for people and crochet prayer shawls for the sick and write encouraging notes and be the best person I could be. Mostly, I figured out that my main responsibility was to take care of Alex. Certainly, I’m no saint, and this difficult time was meant to make me better while Alex got better, and he did. Praise God.

Last year, after a year where Alex had been the best he had ever been, the aggressive behaviors returned with a vengeance. Not only was Alex more aggressive, but he also was also physically bigger and stronger, making him a greater threat to Ed and me. What we thought was behind us was now in front of us, and we were disappointed, frustrated, and scared. Despite more fervent prayers, I felt that God had abandoned us in our greatest time of need. Like Christ on the cross, I asked God why He had forsaken us. When we found ourselves at a crossroads where we had to make a crucial decision, He guided us to a hospital where caring professionals knew how to help Alex. During that uncertain time when we didn’t even know if Alex would get better or even able to come home, we received love and support from family and friends whose presence, phone calls, notes, and prayers sustained us. While Ed and I struggled to be faithful, God was faithful.

A year after our ordeal, Alex has continued to get better at home after his weeks of hospitalization. While we have worked at trying to make up for the lost time of the second instance we lived in “survival mode,” Alex shows signs that he can get back to the time where he showed greatest promise, such as commenting on my talkative nature and finding it funny. As we wait for his complete recovery, I remember my promise to God and keep striving to find ways to help others, especially Alex. As I look back on our time of testing which has given us a testimony of faith, I completely understand the wisdom displayed in the lyrics of the Christian inspirational song “Through”: “When I saw what lay before me, I cried, ‘Lord, what will You do?’ I thought He would just remove it, but He gently led me through…Through the pain and through the glory, through it all we’ll tell the story of a God whose love and mercy will not fail to take us through.”

Today on Easter Sunday, as we celebrate the resurrection of Jesus Christ, I thank God for the merciful and loving sacrifice of His Son, who gives us eternal hope, and for always reminding me through my own son that--no matter what--He will always see us through.

“For God loved the world so much that He gave His one and only Son, so that everyone who believes in Him will not perish but have eternal life.” John 3:16

One in Fifty

A few days ago, the Centers for Disease Control released a report with new statistics regarding the prevalence of autism. According to their survey, one in fifty school-aged (6-17 years old) children has autism. [To read an article about this survey, click here.] This statistic represents an increase from the most recent figures of 1 in 88 children having autism. In 2009, the number of children with autism was given as 1 in 110 children, and in 2007, the commonly accepted statistic was that 1 in 150 children had autism. I’m not a math whiz like Alex, but I can easily calculate that in a little over five years, the likelihood of having a child with autism has tripled. Despite this rapid increase, only those affected by autism seem to care.

Instead, critics have diminished the importance of this statistic indicating increased numbers of school children with autism, stating that the research methods were flawed because they were based upon asking parents instead of professionals, such as doctors or educators. Others have indicated that the only reason for the increased rate of autism lies in better diagnosis; large numbers of children have always had autism but may not have been diagnosed. Another argument states that the criteria for autism have been broadened, allowing more children to carry a diagnosis of autism who would not have previously been considered as having autism.

As much as some people would like to contradict the research, the evidence is clear. More kids have autism than ever. Nearly everyone knows someone whose child has autism. Even more sobering should be the realization that these children grow up, and many of them will need support and services their entire lives because they cannot live independently. Despite all the years of autism research I have done, I was shocked to discover that 40% of children with autism cannot speak, according to the Centers for Disease Control. What is society going to do with thousands of adults who cannot function on their own because autism has hindered their social, motor, and language skills?

Another very real concern should be the behavioral aspects of autism that many prefer to keep hidden. A year ago, we had to hospitalize Alex in the behavioral medicine department for severe anxiety and aggression. After several weeks that included sedation, four-point restraints, and trying a variety of doses and combination of medications, we were finally able to bring him home, where he continues to need medications to keep him calm and safe. This week, I have corresponded with three moms of children with autism who are currently dealing with varying degrees of aggression in their children. I’m sure we are not the only four mothers who have struggled with this upsetting and potentially dangerous situation. Autism is not just having a child who cannot speak or look people in the eye; autism can bring behavior that is terrifying for a family. After the sheer hell we endured last year, I’m thankful that God saw us through that trying time and helped us find the resources we needed to return our sweet son and send away his angry, anxious, out-of-control version. After that experience, I have great empathy for those still going through terrible stages with their children who have aggression and autism. Not only do parents need compassion, but they also need support and resources that are sorely lacking in today’s society.

Next month, April, marks Autism Awareness Month. With the startling newest statistics, instead of awareness, those whose lives have been touched by autism should insist on focusing upon autism action. Most people have a sense of what autism is; what is needed is allocating research and resources that actually help children with autism and their families. Also, as I mentioned in my last blog entry, patience, tolerance, and understanding for those dealing with autism would be appreciated, as well. I’ve said before that I’ve felt that my calling as Alex’s mom is to speak up for him because he can’t speak up for himself. I ran across a quote this week by Martin Luther King, Jr. that reminded me of my need to advocate for him: “As my sufferings mounted, I soon realized that there were two ways in which I could respond to my situation--either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.” The only good thing about the increase in the number of children with autism is that the number of parents who are using their situations as “a creative force” will increase, as well, to make a change. While that task may seem daunting, as one of my favorite writers, Willa Cather, once wrote, “With great love, there are always miracles.”

“In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation.” I Peter 5:10

Should Autism Be Neither Seen Nor Heard?

Yesterday, an excellent essay written by an autism mom, Amy S. F. Lutz, appeared in the online magazine Slate. [To read this article, click here.] Entitled “Where Should Special Needs Kids Be Special?”, this piece discusses the issue of how others respond to behaviors special needs people may exhibit in public places. Describing an incident in which another customer in a restaurant treated her teenage son with autism rather rudely for making noises, the author explains her frustration that her apologies for his behavior and explanation that her son has autism were met with more rudeness and no compassion. Along with her own experience, she cites three other examples from the media where employees or customers in restaurants or stores treated people with special needs quite badly. In one incident, a store employee told the sister of a man with autism that she should put him “on a leash.” While the old adage states, “Children should be seen and not heard,” apparently special needs children should neither be seen nor heard, according to some people.

In the essay, she goes on to say that as a parent of a child with autism, she has tried to show courtesy by not taking her child places where his behavior would be rather intrusive to others. At the same time, she knows that he needs experience in social settings so that he can learn to behave appropriately in public. She makes a valid point, stating, “It’s not OK to be offended by the sight of disabled people in the community or to insult them or their family members. However, neither is it OK for anyone, disabled or not, to engage in dangerous, illegal, and/or unsanitary behaviors.” Personally, I would also add "annoying" to her list, but then many people with cell phones would never be able to leave the house.

In previous blog entries, I have mentioned that Ed and I have perfected the skill of getting Alex in and out of public places so that no one would probably even know he was ever there. Because we have never wanted for Alex to be a burden to anyone, we plan any outings carefully, always aware of the potential triggers that might disturb him and always aware of the nearest exits so that we can remove him from the setting if his behavior becomes disruptive. At some points in his life when his behavior was quite unpredictable, he was basically under our imposed house arrest where he was only allowed out of the house to play in the backyard or take rides in the car. During those times, we were not about to risk his having a meltdown for anyone else to have to see.

Nonetheless, we have also wanted for him to have experiences out in the community so that he could learn appropriate behaviors. When his behavior is socially acceptable, Alex goes to stores, concerts, parks, sporting events, and restaurants. Should he suddenly become overwhelmed or simply ornery, we take him home immediately. Because Alex likes going places, the threat of having to leave if he misbehaves is usually enough to keep his behavior in line. However, we don’t always completely trust him, which means that Ed or I  (and often both of us) usually have a firm grip on Alex’s arm or shoulder to keep him right with us at all times so that he doesn’t bother anyone else. A few weeks ago, we took him to an open house being held by the company that currently provides behavior therapy for Alex. Even though his behavioral therapist had prepared him for how to behave at the opening of their new autism center, we were still leery of what he might do in a new place, particularly one that had many objects that would catch his eye, such as games, books, and toys geared for children with autism. Moreover, we are always a little nervous that Alex’s sudden movements that come with excitement might overwhelm other people, especially considering that he is six feet tall.

At the open house, Alex’s behavior was excellent, perhaps because his therapist had prepared him for what to expect, probably because she was there to give him a guided tour, and possibly because I had a firm grip on his upper arm so that he couldn’t get away from me. His therapist noticed that I was holding onto Alex tightly the entire time, and she commented on this at his therapy session the following week. She asked me why I kept my hand on his arm the entire time we were there, and I explained that I don’t trust Alex in new situations and that I don’t want him to behave in a way that makes other people nervous or uncomfortable. I suspect she thought that I was overly cautious, but I never want Alex to bother other people. Certainly, he has the right to be out in public, but he doesn’t have the right to disturb others, and yet I would hope that other people could find some understanding and tolerance for his disability that makes him different.

After reading “Where Should Special Needs Kids Be Special?” I made the mistake of reading the comments posted in response to this enlightening article. Unfortunately, several people decided to post cruel and ignorant remarks showing their contempt for people with special needs. This reminded me of a wise saying I saw posted online not long ago: “I’d rather have a child with autism than have a child who was mean to a child with autism.” As I read through various hateful comments, I realized that I’m less concerned with protecting the world from Alex than I am with protecting Alex from the world. Thankfully, Alex is blissfully oblivious to any nasty remarks or dirty looks some intolerant person may send his way. As his mother, however, I will continue to hold him close and try to shield him from those who lack compassion and cannot see beyond the idiosyncrasies of autism to the kind and pure heart God has given him. It’s truly their loss.

“But Jesus said, ‘Let the children come to me. Don’t stop them! For the Kingdom of Heaven belongs to those who are like these children.’” Matthew 19:14

A New Path

In the more than seventeen years since Alex was diagnosed with autism, I’ve found myself spending a great deal of time searching for resources to help him. Often, looking for people and methods that may help him takes tenacity and patience because those answers aren’t readily found. Other times, things seem to fall into place with such ease, and then I know the hand of God is at work in our lives.

Shortly after we discovered that Alex had autism, I began reading Dr. Andrew Weil’s book Spontaneous Healing, looking for ways to make Alex as healthy as possible. In one section, Dr. Weil discusses cranial therapy, a gentle manipulation of the head believed to improve wellness. At the end of the book, a resources section provides contact information to find practitioners who can provide the holistic approaches Dr. Weil describes in the book. After more research, I decided that I would like to try cranial therapy for Alex and wrote a letter to the address provided in the book requesting a referral.

When I received their response, I was pleased and surprised to find a local doctor of osteopathy who did cranial therapy with her patients. This began a decade long relationship with an outstanding doctor who worked cooperatively with us to help Alex. With her expertise in nutrition, chelation, and cranial therapy, she provided Alex with the care he needed to deal with his food allergies, heavy metals toxicity, and other health issues related to his autism. When she had to retire a few years ago due to her own health issues, we felt a terrible loss, and when she passed away last fall, we felt deep sorrow.

Without the guidance of Alex’s beloved doctor, I have been searching for another doctor who would take a holistic approach to his health and would be willing to follow biomedical methods found to be helpful to people with autism. In the past few years, we have been fortunate to find compassionate and competent medical professionals for Alex; however, other than his psychiatric nurse practitioner and a chiropractic internist, their background with autism has seemed rather limited. Moreover, we have sensed that they were more concerned with treating the symptoms than looking at underlying causes. For example, Alex has been diagnosed six times in the past eighth months with thrush and cheilitis, or yeast overgrowth in and around his mouth. While treating the yeast with Diflucan helps the symptoms and makes them better, something is causing the recurrence of this problem. I knew we would need to get to the bottom of this problem, but I was having trouble finding a doctor who would take a more holistic approach. Feeling frustrated, I have prayed for patience and an answer.

Several days ago, I picked up a magazine advertising local business that had come in the mail a few days earlier. Thinking it was junk mail, I nearly threw it in the trash, but I decided to take a quick look. As I flipped through it, I noticed a picture of a building I recognized: the office building of Alex’s former doctor. A closer look at the ad revealed that a new medical practice had been established in that office building by a father and son who are doctors of osteopathy specializing in nutrition and wellness, like Alex’s doctor. After consulting their website listed in the ad and discovering that they offered the holistic approach I had wanted for Alex, I decided this was an answer to prayers.

Without hesitation, I called their office that Friday afternoon to see if they would accept Alex’s insurance and take him as a new patient. After confirming that they could see Alex, the receptionist was able to schedule us for an appointment for Monday afternoon. Last weekend, I felt hopeful that this new doctor would be able to help Alex, and I looked forward to meeting with him. On Monday, we were pleased we didn’t have to wait for our appointment, and I was immediately impressed by the doctor’s manner: kind, understanding, and compassionate. He interacted with Alex easily, and Alex felt comfortable with him during the examination. As Ed and I discussed our concerns about Alex’s repeated bouts with yeast overgrowth, he listened carefully and explained his ideas clearly regarding what he thought was the cause and what we could do to help Alex. Not only was he likeable, but he also inspired confidence, making us feel that we had brought Alex to the right place.

His assessment is that Alex’s immune system has been weakened, leaving him vulnerable to infections, such as the fungal thrush, the bacterial folliculis, and the viral chicken pox, all of which he has had recently. To strengthen his immunity, the doctor recommended high doses of vitamins C and D3. To address his yeast overgrowth, the doctor suggested that Alex take a prebiotic supplement in addition to the probiotic he has been taking, which will help balance his digestive system. To ease the mouth discomfort the yeast causes, the doctor recommended an old herbal remedy, gentian violet. Armed with this information, we have gradually implemented the recommended protocol, starting with vitamin D3, then gentian violet. Next, we will add the prebiotic, followed by vitamin C.

With Alex, we have learned that adding only one new thing at a time is crucial to measure its effects upon him, whether positive or negative, and the doctor wholeheartedly supported our gradual approach to the new supplements. He wants to see Alex in a month to check his progress, and we hope and pray that the next time we see him we can tell him how much Alex has improved, thanks to his help. The way things have moved quickly and easily into place with this new doctor reminds me that God is in control, and when the timing is right, He will bring the right people across our path and give us a sense of peace, knowing that everything will be all right in the end.
 

“Your own ears will hear Him. Right behind you a voice will say, ‘This is the way you should go,’ whether to the right or to the left.” Isaiah 30:21

Casino

Years ago, Alex became fascinated with slot machines. Even though his mathematical mind understands that the odds of actually winning the jackpot on slot machines are relatively rare, he still remains enamored with them. While some kids want to go to Disney World, Alex wants to go to Las Vegas. Several years ago, a friend of mine who knew how much Alex liked slot machines brought him back a souvenir from a trip to Las Vegas that he still treasures to this day: plastic cups from the casinos used to hold change to play the slot machines. I even made him a slot machine cake one year for his birthday because that was his primary interest at the time. Of course, thinking of Alex in a casino always brings to mind scenes from the movie Rain Man where the Babbitt brothers make a fortune in Las Vegas because Raymond's savant memory allows him to "count cards" and help Charlie win big at the blackjack tables. However, Alex's memory would not be of any use when it comes to the pure luck required for slot machines.

Knowing that he couldn't actually go to the casinos because he wasn't old enough, Alex found good substitutes in home versions of the game, including small slot machine replicas and computer games. One computer game, Casino Empire, allowed him to design his own casino layout and then run the business. Any customers of Alex's casino would need to share his love of slot machines because that's all his casino offered, lots of slot machines. Unfortunately, Alex would spend so much of his allotted money of slot machines that he didn't have enough money to pay the staff, resulting in customer dissatisfaction because apparently the bathrooms were not being cleaned. Alex didn't care; he thought the ultimate casino just needed lots of slots.

As Alex neared the ages of twenty-one, the required age to enter casinos, the more he told us that he wanted to go to a casino and play slots. With the unpredictable behavior he showed last year at the age of twenty, we had doubts that Alex's wish would become a reality anytime soon. However, as he has made improvements, we began to think that he might be able to handle a trip to the casino, especially after he turned twenty-one in December. Knowing how much this trip would mean to him, we decided to offer it as a big reward for good behavior.

At the beginning of last month, we told Alex that if he could behave himself the entire month of February, we would take him to a casino to play slots. He was delighted with this idea, and we discovered that the promise of the trip had benefits for us, as well. Any time Alex started doing something he shouldn't, all we would have to say was, "CASINO!" to make him stop immediately in his tracks. This was a good test for us to see which behaviors he could control. Interestingly, we discovered that Alex could, indeed, control his behavior most of the time when a reminder of the ultimate reward was given. Although he had a few minor slips, for the most part, he behaved very well for the entire month, and we decided that he had earned his reward.

Last Thursday, we had an appointment with the psychiatric nurse practitioner who oversees Alex's medications. Alex didn't realize that her office is only a few minutes from a casino, and we had planned to take him there after the appointment, provided he seemed to be doing well. As we pulled up to the casino that he had only seen in commercials and on the Internet, a huge smile crossed his face, knowing that his wish had finally come true.  Filled with hundreds of slot machines, the Blue Chip Casino lived up to Alex's expectations. Although we were concerned that he might experience sensory overload from the crowds, the flashing lights and sound effects of the slot machines, and the cigarette smoke in the air, Alex seemed oblivious to anything that might bother him. Instead, he focused upon only the excitement of getting to play the slot machines.

During the hour that we spent there, he happily played penny and two-cent slots on three different machines. He played a video slot machine that had icons of money and another based upon his beloved television game show, Wheel of Fortune, but his favorite was an old-fashioned slot machine with reels that actually spun and had the traditional symbols of fruit and bars. In all, he won about a dollar and only wound up spending $3.50, which was cheap entertainment, especially since it made him so happy. In fact, he told us he had wanted to go to a casino "for twenty-one years." How pleased we were that his lifelong dream had finally come true! In the end, he decided that he'd like to come back to the casino another time. Of course, we were willing to make the same deal with him; that is, if he behaves for another month, we'll bring him back to the casino as a reward. We just hope that the buzzword "CASINO" works as well this month as it did last month.

"Watch out that you do not lose what we have worked so hard to achieve. Be diligent so that you can receive your full reward." 2 John 1:8

How I Did Not Give My Son Autism

This week, the blog The Thinking Mom’s Revolution published an excellent entry entitled “How I Gave My Son Autism” in which a mother examines possible causes of autism that may have contributed to her son’s autism. [To read this blog entry, click here.] With specific references to autism research, she explains how exposing her son unknowingly to various things deemed safe, including Tylenol and sonograms during pregnancy, potentially made him susceptible to autism. Many of the possible culprits were based upon the recommendations of doctors, such as Pitocin and a Caesarian section during delivery; she was simply doing what medical professionals advised. Sadly, she still feels many of her actions are “unforgivable” because of the effects they have had upon her son.

Like her, I have often wondered what, if anything, I did to contribute to Alex having autism. I have always been a seemingly healthy person who lived a very healthy lifestyle. Nonetheless, my pregnancy with Alex was designated high-risk when I was diagnosed with the autoimmune blood platelet disorder idiopathic thrombocytopenic purpura, which made me susceptible to bleeding. To treat my condition, I had to take the corticosteroid medication Prednisone and intravenous gamma immune while several sonograms monitored his development. When I went into labor almost a month early, he was delivered by Caesarian section. Certainly, I have wondered if any of those circumstances led to Alex developing autism, but I was simply following the direction of doctors whom I trusted. Moreover, those treatments probably saved Alex’s life and mine. I can’t feel guilt for that.

Perhaps looking for better answers and certainly seeking ways to help Alex, I constantly research autism.  As I study the research, I often discover that many of the proposed causes could not be responsible for Alex having autism. In other words, my actions should have prevented giving him autism.  For instance, this month, the media reported a new possible cause of autism: low folic acid. [To read the article “Can Folic Acid Reduce the Risk of Autism?” click here.]  Because I knew that taking folic acid prior to and during pregnancy prevented neural tube disorders in babies, I faithfully took folic acid supplements before and during pregnancy.  By being proactive in that respect, I can feel confident I did the right thing for Alex.

According to another article published this month entitled “Fact Box: 5 Areas of Research into Environmental Causes of Autism” [To read this article, click here.], potential causes of autism include the following: nutrition, mother’s immune system, traffic pollution, chemicals, and medication. To address those issues, I can honestly say that I ate properly and took supplements when I was pregnant, I trusted my doctors who treated my immune system issues, I live in a town with minimal traffic pollution, I avoid chemicals as best I can, and I’ve never taken the anti-depressants specifically cited as problematic. Once again, I can’t take blame based upon these causes.

A third research article that appeared this month also seems to suggest possible causes of autism that do not account for Alex having autism.  The article “Autism Causes and Risks, Latest Findings” [To read this article, click here.] proposes various risk factors for autism, including taking anti-depressant and anti-seizure medications during pregnancy, which I have never taken. The research also suggests older mothers and close births as potentially problematic. I was 29 when I gave birth to Alex, putting me under the older than 35 definition of “older mothers.” Also, since Alex is my only child, the close births theory of having two pregnancies spaced a year apart doesn’t fit our situation, either. Another risk factor, genetics and gene mutations, is a possibility, but not one over which I had any control. Two other risk factors could have affected Alex—fever and prenatal inflammation—as I had flu and ran a fever when I was pregnant. However, I did treat the fever with over the counter medication, which, according to the research, should have helped. Moreover, I would think many pregnant women would run a fever at some point; I question how much this might contribute to autism.

Despite the various research about potential causes of autism, nothing has arisen to name definitively the true cause and what might be done to prevent or cure the epidemic. While I empathize with the mom who wrote “What I Did to Cause My Son’s Autism,” I choose to focus on all the things I did not do to cause my son’s autism. Everything I did during my pregnancy and since Alex’s birth has been focused upon keeping him and me healthy, and everything we have done since his diagnosis of autism was to make him better so that he can reach his full potential. Like all parents, we have probably made unintentional mistakes along the way, but anything we did for Alex was out of unconditional love for him. When any feelings of guilt arise, I must remember that we have always tried to do what we thought was best.  Furthermore, we keep praying for Alex’s complete healing so that he can enjoy life to the fullest and “so the power of God could be seen in him.”

“As Jesus was walking along, he saw a man who had been blind from birth. ‘Rabbi,’ his disciples asked him, ‘why was this man born blind? Was it because of his own sins or his parents’ sins?’

‘It was not because of his sins or his parents’ sins,’ Jesus answered. ‘This happened so the power of God could be seen in him.’” John 9:1-3

Lent and Sacrifice

This past week, Ash Wednesday marked the beginning of the Christian observance of Lent, the time leading up to the celebration of Easter. Several of my friends, some of whom are devout Catholics, have followed the tradition of sacrifice by giving up something during this time. Some have given up candy, others will not use their Facebook accounts, and a few have pledged not to swear during Lent. A discussion arose the other day among my colleague friends, who are an eclectic mix of religious backgrounds, regarding how some people “cheat” by indulging in the “forbidden” by not counting Sundays in Lent and allowing themselves a reprieve or by justifying backslides by reasoning that when they gave up sweets, they didn’t mean cookies, only candy, as if they’re somehow outsmarting God.

Growing up in a Protestant denomination that did not traditionally encourage giving up something for Lent, I always felt sorry for my Catholic friends who were struggling with the temporary loss of something beloved during this time.  Ed, who was raised Catholic, tells of “forgetting” to forego meat on Fridays by having a hot dog. Amazingly he would remember after eating it and would relieve his guilt by promising himself to say Hail Marys or to go to confession. Somehow I imagine God finding his approach to sacrifice by admitting guilt and doing penance more genuine than those who deny themselves yet complain about it the entire duration of Lent.

While I admire those who not only give up something meaningful for Lent, but also do so willingly and wholeheartedly, I am not one to observe that tradition. However, some online conversations this week with fellow autism moms made me realize that for those of us whose children have autism, sacrifice is something we know every day. Of course, all parents make sacrifices for their children, but those whose children have greater needs often must give up more for the sake of their children. Certainly, we don’t want to be martyrs; therefore, others are often not aware of how our lives differ greatly from theirs because we have had to give up things others take for granted. While we wouldn’t trade our children whom we love dearly for anything, we long for a simpler life for them and ourselves.

While parents of typical children breathe a sigh of relief once their infants start sleeping through the night, many children with autism continue to have sleep issues for many years. An autism mom told me this week about never getting a good night’s sleep because her adolescent son still interrupts her sleep. This reminded me of a period when Alex was probably seven years old and would climb into bed with us in the middle of the night. Taking him back to his own bed involved a middle of the night battle, and three people sleeping in a bed was way too crowded. This meant that one of us would be like Goldilocks, searching for a bed that was “just right.” Each night created an adventure to see where we would sleep—in the guest bad, in Alex’s bed, in our bed, with Alex, alone, and rarely the three of us together, just too tired to move. Eventually these nightly meetings faded, and we were delighted that Alex was happy to sleep in his own bed again so that we could all get a good night’s rest.

Another willing sacrifice autism parents make for their children is financial. Of course, typical parents know how expensive raising a child is, but those who have children with autism have additional expenses, including various therapies, such as speech or behavioral therapy that may not be covered by insurance. In addition, those who must be on special diets due to food allergies or sensitivities require special foods that may cost twice or three times as much as typical foods. Also, some parents have chosen to give up their jobs or scaled back their careers so that they can be home more with their children, meaning less family income with a more expensive child. Although we have always been blessed with enough financial resources to pay for whatever Alex needs, I know many families who struggle mightily and sacrifice greatly for their children.

Perhaps the least obvious sacrifice parents of children with autism make is a typical day-to-day existence, the little things that others don’t realize we miss. Often, families whose children have autism can’t take vacations because the change of routine and familiar places would greatly upset the child; others can’t financially afford such luxuries. The last vacations we took were when Alex was a toddler—before we knew he had autism and when he traveled well. Since then, we have not been able to travel with him because his unpredictable behavior would defeat the purpose of a vacation—relaxation. In addition, many parents of children with autism can’t go out and leave their children with a babysitter. When Alex was younger, my parents were always willing to watch him so that Ed and I could enjoy an evening out. However, as he and they grew older, we worried that his behavior could be too much for them to handle. He could move faster than they could, and his need for instant explanations required practice in fast-talking, often giving glib, creative, fictional answers. As my mom once said, “I can’t lie fast enough to suit him, like you can.” Consequently, Ed or I go places separately or the three of us go together or more often we all stay home. Essentially, parents of children with autism establish a new normalcy that is unlike lives in other homes. While most of the time, we adapt to the new routines, we do at times covet other people’s seemingly less complicated lives and feel thankful anytime difficult stages pass that make our lives easier.

And so, while my friends are giving up Facebook, favorite foods, or foul words, I have made a conscious choice not to give up things for Lent. As a matter of fact, I have decided to work on not giving up. I will not give up searching for ways to make Alex better, so I will deliberately seek research and compare notes with other autism parents through Facebook and the Internet. I will not give up chocolate, which keeps me happy and calm, even when Alex tests my patience. I will be honest about my frustrations, which may involve occasional colorful language, so that I can deal with obstacles. Most of all, I will not give up hope, which keeps me going on a daily basis. With the hope that Alex will get better, we anticipate the day when we can look back at the things we have given up and declare that any sacrifices we made out of our love for him were, indeed, worthwhile for what we gained in return. Isn’t that the purpose of Lent, after all?

“Live a life filled with love, following the example of Christ. He loved us and offered himself as a sacrifice for us, a pleasing aroma to God.” Ephesians 5:2

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

-->

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