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