Alternative Medicine

Parents sometimes comment that life would be easier if their children came with instruction manuals. Since children with autism often exhibit puzzling behaviors, a definitive guide would come in especially handy for dealing with them. Even with the myriad of books I’ve read about autism and how to address behaviors, I’ve discovered the most useful research to be found in the medical field, especially that which focuses upon alternative medicine, such as diet and nutrition. This week, I ran across some interesting medical stories in the media that piqued my curiosity as I considered how new research may help children with autism.

The first report, “Anxiety in Your Head Could Come from Your Gut,” [To read this news account, click here.] caught my eye because both Alex and I deal with panic attacks. While he takes Zoloft to address his anxiety, I use cognitive therapy techniques I learned several years ago in a stress management workshop to help me calm my nerves. Alex has also benefitted from cognitive therapy calming approaches his behavioral therapist has taught him, learning to take control of his anxiety through breathing techniques and distracting himself from the obsessive thoughts that upset him. I found this article especially intriguing because it profiled children with ADHD, anxiety, and/or OCD whose symptoms improved once they were treated for digestive issues using probiotics. As the article notes, “In one 2010 study at McMaster University in Canada, published in the journal Communicative and Integrative Biology, scientists found a link between intestinal microbiota and anxiety-like behavior.” The article goes on to state: “And now, scientists think there may be a link between what's in your gut and what's in your head, suggesting that bacteria may play a role in disorders such as anxiety, schizophrenia and autism.” Since Alex has often struggled with candida, or yeast overgrowth in his digestive system, his doctor has recommended treating him with probiotics, or good bacteria, to fight the overgrowth of harmful bacteria in his system. When he has yeast flares, his behavior declines, making him obsessive, agitated, and even aggressive. However, by treating his gut with antifungals and probiotics, we see significant improvement in his behavior, likely because his digestive system also improves with this intervention. According to this article, the encouraging news for those whose digestive issues impact their behavior negatively is that the National Institute of Mental Health “is encouraging studies to address the mechanisms of gut bacteria and their association with mental health functions.” Perhaps if more children with autism were treated with probiotics, their behavior might improve, as well.

A second article I found quite interesting explained the use of nutritional supplements to treat traumatic brain injuries, such as those found in automobile accidents. [To read this article, click here.] Dr. Leslie Matthews, a trauma surgeon at Grady Memorial Hospital in Georgia, treats patients with the following combination of supplements:  vitamin D and omega three fatty acids, two powerful natural anti-inflammatories to reduce brain swelling, along with the hormone progesterone and the amino acid glutamine to protect damaged nerve cells. Because of the amazing success they have found with this natural intervention, the article notes, “Every brain trauma patient at Grady receives the same supplements.” As Dr. Matthews explains, "So basically you're giving the body what it needs to heal itself. The body, the way God designed the body, is to heal itself if you give it the right nutrients." Not only was I impressed with Dr. Matthews’ use of alternative treatment for life-threatening injuries, but I also loved that he gave God credit for the marvelous design of the human body. Moreover, his approach is similar to that which Alex’s doctor is using to heal his nervous system and to reduce inflammation by having him take high doses of vitamin D, the omega six supplement (because Alex does not respond well to omega three supplements) evening primrose oil, and progesterone cream. While we have not tried the amino acid glutamine, I will be asking Alex’s doctor for his opinion about adding that to his supplement regimen when we see him next week. Like Dr. Matthews, I believe that God designed the body to heal itself with proper nutrition. I’m just thankful for doctors like her and Alex’s doctor who support an alternative and natural approach to healing.

While the first two articles gave me hope that doctors are beginning to have innovative ways to heal conditions associated with the nervous system, such as autism, a third article disappointed me in the medical approach used for a teenager with autism. In “Surgery Reduces Autism-related Screaming,” a reporter detailed the case of a teenager with autism who “screamed louder than a lawn mower more than 1000 times a day.” [To read this article, click here.] To address this problem, doctors performed surgery on his vocal cords to limit his volume. While I can certainly understand how stressful having a child who screams all day could be, like many who commented on this article, I have issues with performing this surgery, which some described as “mutilation.” I have to think that these parents were driven to their breaking point to consider such an extreme solution to the problem, and I wish someone had thought to find out why this poor child was screaming constantly. Was he in pain, and screaming was the only way to communicate his suffering? Perhaps if his doctors had treated him with probiotics, they might have addressed gut issues, or if they had given him vitamin D to decrease inflammation or progesterone to heal his damaged nerves, they may have healed his body so that he didn’t need the surgery on his vocal cords. While I don’t know the cause of his constant screaming, I just feel bad that he may now be suffering in silence and pray that he is not.

Yesterday, on a rare eighty-degree day in late September here in Northwest Indiana, Ed, Alex, and I went to the Indiana Dunes State Park, enjoying the late afternoon sun reflect on Lake Michigan as we sat on a bench in the sand. In that peaceful setting, I thanked God for the healing we have seen in Alex over the past several months that allowed us to enjoy that moment as a family. In that beautiful setting, I watched Alex smile and wondered what he was thinking, but I was filled with joy that he was happy. As I glanced at the sun dipping lower in the sky, I began to hear Alex saying something softly, and I leaned my head closer toward him so that I could hear him better. In a barely audible voice, he was singing, which he rarely does, a Kenny Chesney country song that is one of his favorites: “When the sun goes down, we’ll be groovin’. When the sun goes down, we’ll be feelin’ all right. When the sun sinks down over the water, everything gets hotter when the sun goes down.” It doesn’t get much better than that.

“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

The Return of Old Friends

As I described in my blog entry last month titled “The Return of Good Year Alex” (August 25, 2013), we have been delighted to see recent improvements in Alex’s behavior, health, and speech. In fact, I told a friend the other day that in many ways Alex is probably the best he’s ever been--praise God. After a year in which his senses were dulled by medication to keep his anxiety under control, he has become alert, enabling him to enjoy life. As part of this awakening, he has returned to familiar pastimes that make him happy. Perhaps because he couldn’t concentrate, he had basically abandoned reading and watching television, which had been favorite activities of his for many years. However, he once again has books stacked around his bed so that he can read before bedtime and as soon as he wakes up in the morning. He has also started watching television shows that were favorites when he was younger, and as he did when he was small, he refers to the people on the shows as if they were good friends of his. Not only do we welcome back our contented son, but we are also happy to have his old friends from television entertaining him.

One of Alex’s favorite shows when he was little was Thomas and Friends, the cartoon series about Thomas the Tank Engine. Apparently, this is a favorite of many children who have autism. Perhaps they like this show because they can easily distinguish the different trains through their distinctive colors and voices, or maybe they appreciate that the narrator tells the emotions that the trains are feeling so that the children don’t have to figure out what the faces are conveying. To be honest, I never paid much attention to the show until Alex started watching it again a few weeks ago, after many years of not watching it. While it may seem odd for a 21-year-old to enjoy this cartoon, I have discovered by watching it lately with Alex that it is a really good show with catchy music and good lessons for life, such as being patient and kind and hard working. My only complaint is that I have the theme song stuck in my head and hum it incessantly throughout the day.

Like many children with autism, Alex has been a fan of Wheel of Fortune from an early age. Between the spinning wheel and giant letter board, he was mesmerized by the game. When he was a little older, he also found Jeopardy equally engaging, and their all-time champion Ken Jennings became one of his personal heroes. Since game shows have been special favorites of his, he could spend hours watching the Game Show Network when he was in his teens. However, he lost interest in game shows over time, and he no longer seemed to want anything to do with his old friends Pat Sajak, Vanna White, or Alex Trebek. Lately, though, he has rediscovered the fun of playing along with these old favorite games on television, and we’re pleased to see his mental sharpness return as he solves the puzzles and blurts out the clues.

Although an unusual choice for a child’s favorite television show, Alex found the PBS political news show The McLaughlin Group, a weekly roundtable discussion of current events, completely engaging. Identifying himself as a political conservative, Alex aligned himself with fellow conservative Pat Buchanan and jeered political liberal Eleanor Clift, whom he deemed “annoying.” After not watching this show for several years, Alex has rediscovered how much he enjoys the debate between Pat and Eleanor, grinning as they present their points passionately. Each week, he eagerly anticipates Saturday evening so that he can watch the lively conversation among the five participants, which often makes him laugh as they interrupt each other, trying to make themselves be heard.

Probably the most surprising recent return has been Alex’s old pal Pinocchio. When he was about four years old, Alex watched the Disney video of Pinocchio hundreds of times, often several times in a row. He drove us particularly crazy rewinding the videotape repeatedly when the scene of the whale swallowing Pinocchio’s father came on; apparently the bubbles that rose to the surface of the water fascinated him. Not surprisingly, Alex eventually became tired of this video and seemed to outgrow watching (and re-watching) all of his Disney videos. The other day, he suddenly asked to watch Pinocchio, which meant that I needed to head to the basement, where they’re stored, and try to remember if we even still have a working VHS player. Fortunately, I was able to find his beloved old video and a video tape player that works, and he happily watched the entire movie, never once stopping to rewind the tape. Since neither of us had seen Pinocchio for more than fifteen years, watching it seemed like something we were doing for the first time. After what we’ve been through the past several months, I realized that in some ways Alex is Pinocchio. He has come from the wooden puppet that made foolish choices to “a real boy” with a second chance to enjoy life. As his Jiminy Cricket, trying to guide him on the right path as the voice of his conscience, I couldn’t be more pleased to see the new, improved Alex spending time with “old friends” on television who not only make him happy but also influence him in a positive way.

“I remember the days of old. I ponder all Your great works and think about what You have done.” Psalm 143:5

Lessons from Special Needs Parents

This week I was surprised and pleased to receive a letter in the mail from an old friend and former colleague with whom I hadn’t been in contact for several years. Although he had been my teacher in seventh grade and later worked with me for many years, we lost touch after he retired from teaching and moved to another city to be near his children and grandchildren. Apparently, he decided to write to me after seeing the article about our family in the November 2012 issue of Woman’s Day magazine. [To read this article online, click here.] As the parent of a special needs adult himself, he shared that his son, who has cerebral palsy and is wheelchair bound, is currently living in a group home with three other men. He also told me that one of his son’s roommates is a young man with autism who is a Civil War buff and enjoys participating in Civil War reenactments. I think he wanted to prepare me for the eventual changes ahead when Alex will be away from home in supported living and to let me know that Alex will be all right, just as his son and his roommate with autism are all right.

His letter made me think back to when I first started teaching, a few years before I got married and a few more years before I had Alex. At the time, I was fortunate enough to work with him and with another parent of a special needs child; both of them were parenting teenagers with severe physical and mental challenges. My understanding is that his son was given too much oxygen shortly after birth that caused damage resulting in cerebral palsy. My other friend and colleague has a son who suffered a stroke during her pregnancy that left him with paralysis on one side and cognitive difficulties. Despite all their worries and responsibilities of caring for these children who were becoming adults, my friends didn’t complain or feel sorry for themselves. In fact, they have always been two of the most upbeat and optimistic people I know. As I got to know them better, I marveled at how well they coped with the challenges their children faced, and I wondered how they could ever be happy again once they knew their children had disabilities that would profoundly impact their lives and the lives of their families.

As someone who believes that God puts people into our lives for a reason, I have no doubt that God placed these two caring parents of special needs children in my life long before my child was diagnosed with autism. Knowing I would need role models and empathy, He placed them close at hand to provide me with the support I needed. Even though the original prognosis for their children was quite poor, with their parents’ love, devotion, faith, and hope, their children overcame obstacles doctors predicted they never could. Moreover, in trying to give their children many experiences in life, they took them out in the community to enjoy activities, such as concerts and sporting events. As I watched them with admiration, I was learning lessons I didn’t know I would need later in life when my own child was diagnosed with special needs.  Essentially, some of the most valuable things I’ve learned about raising Alex I’ve learned from two special needs parents and the examples they’ve set. Of course, both of them, who are quite humble about their roles as special needs parents, would say I would have figured out what I needed to know on my own, but I am thankful for what I was able to learn from them.

1. Create a “new normal.” My child may not play sports because of his disability, but he can go to sporting events and enjoy himself. My child may not play a musical instrument because of his fine motor issues, but he can learn to love music by listening to it. Instead of complaining about what he can’t do or how our family life is different from other families’ lives, we focus on what he can do and create our own traditions that have meaning for us. For instance, while going to the grocery store is a necessary chore for some families, for us it’s a fun outing because Alex enjoys it so much.

2. Have hope. Both of my friends chose not to believe all the limitations professionals placed upon their children. They focused on what their sons could do instead of what they couldn’t do. My friend whose son had a stroke prior to birth was told by doctors that he would never walk or talk. Not only can he walk and talk, he has a job and lives in an apartment by himself, and he has a wicked sense of humor that shows how sharp his mind really is. I give his parents, especially his mother, all the credit for how far he’s come. Seeing his progress gives me great hope for Alex’s future.

3. Have faith. Although both of my friends’ children have dealt with serious physical conditions, their parents trusted God at all times. Despite the horrendous financial strains on their family budgets because of medical bills, they had faith that the Lord would provide, and He did. They knew that God has always been in control, and their faith carried them through many difficulties, just as faith has carried us through with Alex.

4. Keep a sense of humor. One of the qualities that has always impressed me about my two friends is their ability to find humor in situations that others may not see. Frankly, our kids are funny, but not everyone sees how clever and amusing they really are. Often humor keeps us from crying in some circumstances, and laughter is always preferable to tears.

5.  Choose joy. While caring for a special needs child can be exhausting and frustrating, I’ve learned from my friends’ example to choose to be happy. Not only does this make each day easier, but that joy can be contagious and spread to those around us. Recently, a friend of mine commented that I was always upbeat, which made her feel that she could be upbeat, too. I took that as a tremendous compliment and felt pleased that she saw me as a joyous person.

In my previous two blog entries, I’ve written about parents of children with autism who apparently could not cope with the struggles and decided that death was preferable to life, leading to tragic outcomes. I only wish that they had been able to learn from the special needs parents who unknowingly acted as mentors to me. Perhaps with creativity, hope, faith, humor, and joy, they could have endured the struggles and enjoyed the rewards. I’m just thankful for my friends who shared their experiences as special needs parents so that I would be better prepared for being an autism mom. They truly are gifts from God.

“…For the joy of the Lord is my strength.” Nehemiah 8:10

Another Cry for Help: The Tragic Case of Kelli Stapleton

In last week’s blog entry, I discussed the heartbreaking story of Alex Spourdalakis, a teenage boy with autism whose mother attempted to find medical help for his violent behavior and later fatally stabbed him to death and attempted suicide. While I certainly do not condone his mother’s decision to end his life or hers, I felt sympathy for all she had endured as a single parent trying to take care of her son who was becoming increasingly dangerous to others and was likely suffering from terrible abdominal pain. Our experience with our own Alex’s past bouts of aggressive behavior has allowed me to empathize with the fear and frustration that could drive a parent who did not have the support and faith we did to commit such a horrible and desperate act.

This week, the media reported another tragic story about a mother who attempted to take her own life and the life of her fourteen-year-old daughter with autism. [One account of this story may be read here.] In February of this year, Kelli Stapleton began writing a blog entitled The Status Woe in which she described the difficulties of dealing with autism and aggression, her daughter’s violent outbursts, and trying to find help for her daughter Issy. [A link to her blog may be found here.] In her last post this week on September 3^rd, she describes working diligently to get a school placement for her daughter. After thinking that they had successfully found a placement for her daughter, the plans fell apart when a behavior plan would not be implemented the way she firmly believed it should be. Instead, the school decided that they would not allow her daughter to enroll there and recommended instead that she home school her daughter. Kelli’s frustration and disappointment is evident in her statement: “I am devastated.” Later that day, she was found in her van with her daughter, both of them unconscious from carbon monoxide poisoning. Her daughter was hospitalized in critical care; she was arrested for attempted murder.

In response to the tragic news of the Stapleton family, the Autism Self Advocacy Network issued a statement [To read their statement, click here.] condemning not only the mother but also any media portrayals of parents like her in a sympathetic light. Part of their statement reads as follows: “At the end of the day, lack of services don’t cause attempts by parents to murder their kids. What may play a role, however, is the idea prevalent in our culture that it is better to be dead than it is to be disabled.” While I absolutely understand their position that people with autism need protection, their comment shows a complete disregard for what some parents endure. Lack of services leads parents to sheer mental and physical exhaustion and a hopelessness that could lead to desperation. Moreover, many parents suffer the same physical and emotional distress that victims of domestic violence face; however, this battering comes from their children, many of whom are bigger and stronger than they are. The second assertion that death is preferable to a life with disability is ridiculous. Too many parents fight tirelessly to help provide the best life for their children with disabilities, taking care of them themselves 24/7 with unconditional love. To suggest that those with disabilities are treated as though they are somehow less is unfair to parents who give them so much more.

After reading comments in the media regarding Kelli Stapleton’s actions, I noted primarily two distinct groups: those who have no direct experience with autism who show condemnation and those who have family members with autism who show compassion.  This division is not surprising, as some parents with autism often deal with criticism from those who know nothing about what life is like for them, giving them parenting advice and unhelpful suggestions about what they would do if they were in their situation. My advice to those who think they’re being helpful is the old adage, “If you don’t have anything nice to say, don’t say anything at all.” Parents need support and understanding, not uninformed counsel, no matter how well intentioned it may be.

In the movie The Big Chill, one I have watched many times, the plot begins with the funeral of the character Alex and the reactions of his college friends. In speaking about Alex’s suicide, the minister notes that things happen in life that we don’t understand and remarks, “This is one of those times.” He goes on to suggest that Alex should have had every reason to live, but somehow he lost all hope. Poignantly he asks, “Where did Alex’s hope go?” In thinking about Dorothy Spourdalakis and Kelli Stapleton, I’ve wondered where their hope went that they felt death was the only option for themselves and their children with autism. Even in our darkest times with Alex, I knew that God was there, and we never lost hope. I only wish that they had felt that same sense of hope, and I pray that they and all other parents of children with autism can find hope and peace in the darkness, knowing that the light will come.

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.” Romans 15:13

A Cry for Help: The Tragic Case of Alex Spourdalakis

This week, CBS This Morning aired an excellent report on the tragic case of a fourteen-year-old boy with autism named Alex Spourdalakis. [To watch this report, click here.] While the general public probably was not familiar with how he and his mother suffered for several months, many parents of children with autism followed his story closely as it unfolded last spring, horrified by how he was treated in a medical facility that should have helped him. After incidents of aggression that his mother believed were triggered by intense pain, she took him to Loyola University Medical Center in Chicago, hoping to find relief for her son. Instead of investigating medical causes for his behavior, however, he was treated as a psychiatric patient and placed in four-point (arms and legs) restraints for twelve days. Despite his mother’s pleas to run diagnostic tests, the hospital threatened to have him removed from her custody. Fearing that she would lose her vulnerable child, Dorothy Spourdalakis chose not to fight the system and took her son home. Before he was dismissed, a gastroenterologist well known in the autism community who had been alerted to the family’s situation performed an endoscopy and discovered numerous gastric lesions, a likely source of intense pain that would explain Alex Spourdalakis’s aggressive behavior. Since he was basically nonverbal, probably the only way he could convey that he was in pain was to lash out physically. Unfortunately, the doctors at Loyola did not connect the behavior to the physical symptoms, nor were they apparently willing to treat his digestive issues. Physically and emotionally exhausted, his mother took him home to care for him herself, even though his size at 225 pounds made him a genuine threat to her safety.

Once he was released from the hospital, the story was no longer followed in the media, and no one knew what went on behind the closed doors of the Spourdalakis home. Having dealt with aggressive behavior with my own Alex, I feared for his single mother, wondered how she was coping, and prayed for healing and hope for their family. In June, Alex Spourdalakis once again appeared in the news; sadly, he had been murdered. Apparently overwhelmed by caring for him, his mother and caretaker attempted to give him an overdose of medication, and when that didn’t work, his mother stabbed him to death. As part of their plan, they also attempted suicide by drug overdose but were found before the drugs killed them, too, and they were charged with murder. While I certainly cannot condone what Dorothy Spourdalakis did, I can sympathize with her frustration with a medical community that could not relieve her son’s suffering and a society that offers little to no help for parents of children with autism. As I considered what fear and hopelessness must have led her to such a desperate act, I suspected that his mother was driven to her breaking point, and I felt sympathy for all she had endured. Moreover, I felt a greater sympathy for her child and all the physical pain he had suffered needlessly.

Whenever tragedy arises, we wonder what good can come from it. I hope and pray that this family’s sad story will cause greater awareness on several levels. First, the medical community must investigate physical causes for aggressive behaviors in autism and not assume they are psychological in nature. Since many with autism cannot communicate clearly, they are unable to express what pain they may be feeling, and many of them have inflammation of their digestive tracts that can be treated. While I believe that my Alex has been spared of most digestive issues because he has been on a strict gluten-free and dairy-free diet since he was seven years old, he has a lifelong tendency toward stubborn yeast infections in his digestive system. As I have explained in previous blog entries, we have been fighting thrush, a yeast infection of his mouth and throat, for over a year now with prescription and natural anti-fungals, probiotics, and vitamin supplements to address inflammation and boost his immune system. When the yeast flares, his behavior declines, and as the yeast subsides, he returns to his sweet, docile self. How many children with autism are suffering with some type of medical issue that could be treated but is being mistaken instead for a psychological issue or just bad behavior?

To make sure their children are receiving the proper medical care, parents of children with autism must be assertive, informed, and vigilant. While I am not naturally an assertive person, I have learned to advocate for Alex because he cannot speak for himself. Thankfully, Ed is more assertive than I am, and I know that he always supports me. To give myself greater confidence, I study research so that I can convey my concerns to medical professionals and make them understand what Alex needs. Moreover, we do not waste our time with those who do not understand autism and don’t seem willing to listen and learn, which has meant sorting through professionals until we have found excellent ones who can help us help Alex. While at times this has been a frustrating process, we have been even more thankful when we have finally found professionals who genuinely want to help Alex.

Finally, parents of children with autism need support from family, friends, and society. We have been blessed with people whose love, kindness, and prayers have lifted us through difficult times and shared our joys during good times. Unfortunately, not all autism parents have the supportive friends and family we do; however, the community of autism parents offers understanding and empathy, too. One of the few good things about the autism epidemic is that finding another parent who is going through a similar situation is easy. I was reminded of that this week when I spoke with a former student of mine who also has a son with autism. In addition to the smaller communities who can support parents of children with autism, the greater community must support them, as well. More programs need to be in place to help parents and children, as we know first hand from being on a waiting list for over a year to get Alex into an outstanding day program for adults with autism. Fortunately, his behavior has improved significantly, thanks to appropriate medical intervention and the grace of God, so that Ed and I can care for him ourselves 24/7. However, many parents need help, and they are not getting it. Clearly, the tragic case of Alex Spourdalakis highlights the need for better care for children with autism; while he no longer suffers, many still do, and we must not ignore their cries for help.

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

The Return of Good Year Alex

 

When I started writing One Autism Mom’s Notes over three years ago in June 2010, Alex had reached a stage where he was the best he had ever been cognitively, socially, and behaviorally. After years of various interventions, including speech, occupational, and biomedical therapies, he had made significant gains that made our lives the most normal they had been in years. For example, we could take him to restaurants and shopping and do many things as a family that we couldn’t do previously due to his unpredictable behavior. These improvements meant even more to us because we had gone through a very challenging stage a little over a year before that in which he would have aggressive and destructive meltdowns that would arise suddenly for seemingly meaningless reasons. After months of walking on eggshells around him, we were delighted to welcome the return of our sweet and docile son and felt blessed that he was so much better.

In fact, one of the reasons I started writing this blog was that not only did I have more time to write about our family’s life with autism because I didn’t have to constantly monitor Alex, but also I wanted to share hope with other families to let them know that life with a child who has autism does get better. We savored this time, knowing how far we had come, celebrating Alex’s finally mastering skills other parents may take for granted, such as learning how to speak and becoming toilet trained. After months of the halcyon phase, which we later referred to as “Good Year Alex,” we were disappointed to see a decline in Alex as he became lethargic and lacked the energy and enthusiasm to do much of anything other than lie on the couch. Worried that he was ill, we took him to the doctor, who ran tests and couldn’t really find anything wrong with him physically but suggested some nutritional supplements to boost his energy.

In a few months, Alex went from being drowsy all the time to being anxious and agitated, and we saw the return of the aggressive and destructive meltdowns we had seen a few years prior. However, these meltdowns were even more frightening because Alex was bigger and stronger, and the episodes were more intense. Once again, the doctor didn’t seem to have any real answers, and eventually we were led to hospitalize Alex for several weeks to have him placed on medications that lessened his anxiety and aggression. While we hated that Alex needed to take medicine that dulled his senses, we had to address his extreme anxiety and make certain that he couldn’t hurt anyone during his intense rages.

After more than a year, Alex has gradually made improvements with a few setbacks along the way, namely dealing with chronic yeast infections of his mouth that make him irritable. Over time, he has adjusted to his medications that now keep him calm but no longer make him as sleepy and dull-witted. This summer we have enjoyed taking him places, such as parks, the beach, and concerts—typical family activities that we were unable to do for many months because of his behavior. In addition, he has rediscovered the enjoyment of reading and watching television, two activities that he basically abandoned for a year, perhaps because he couldn’t focus enough to enjoy them.

In the past few weeks, we have noticed that Alex’s language has improved significantly as he not only speaks more often (At one point during the downward spiral, he barely spoke at all.), but he also speaks in complete sentences, asking appropriate questions and making insightful comments. In fact, his speech is probably the best it has ever been. In addition, he seems to have regained access to his phenomenal memory, telling us about things he remembers from years ago and sharing trivia that he has read. Also, his receptive language and attention span have clearly improved because he answers our questions right away instead of looking at us blankly or ignoring us.

While we are obviously pleased that his behavior and speech have made huge gains, the best sign of progress has been seeing Alex regain his joy. After watching him go through months of being upset or appearing to have no emotion, we are relieved and overjoyed to see him happy nearly all of the time, smiling, laughing, and enjoying life. Like all parents, we just want our child to be happy and healthy (or as Ed and Alex have decided, the three H’s: happy, healthy, and handsome), and we thank God that He has restored both of these in Alex, which in turn, makes us truly happy. Because of the trials we have been through, we know how precious the improvements are, and we are thankful for God’s intervention and for the people He has sent to help make Alex better. For a time, we mourned the loss of Good Year Alex, and now we welcome his return, maybe even seeing a more improved Better Year Alex. As we celebrate the progress, we also maintain hope for the future, knowing that with God, all things are possible.

“And after you have suffered a little while, the God of all grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen, and establish you.” I Peter 5:10

First Fillings

 

In July, we took Alex to the dentist for his regular cleaning and check-up. Because of his severe anxiety issues the past couple of years, we had not taken him for his six-month appointment in about two years, fearing that at best he would not cooperate, and at worst he might have a meltdown. Although Alex has always liked going to the dentist, we did not think he would be able to handle the sensory overload involved in having his teeth cleaned and checked until recently. Once I made the appointment with the dentist who has taken care of him for the past seven years, Alex eagerly anticipated his appointment. Primarily, he looked forward to seeing his beloved dental hygienist who patiently cleans his teeth, praises him enthusiastically, and calls him “Sweetie.”

While this appointment was the same as others in that Alex happily skipped into the office, excited to be there, this time was also different. For the first time in his life, they discovered that Alex had some decay in his back teeth. While we knew that eventually he would have a cavity someday, we hoped that he would continue his lifelong trend of going cavity-free. Also, we dreaded the thought of needing to have cavities filled. His dentist, who has many patients in his practice with special needs, assured us that the best way to handle this procedure was to have Alex’s teeth filled under general anesthesia in a hospital setting. The idea of putting Alex to sleep, especially since he’s never had anesthesia because he’s managed to avoid surgery the way he’s avoided cavities, made me nervous; however, his dentist told me that he had done over 11,000 hospital dentistry procedures. Consequently, we agreed that this would be the best way to fix Alex’s teeth to prevent him from experiencing needless pain and anxiety.

Before Alex could have the dental work done under anesthesia, he had to be cleared medically with a check-up from a doctor on the hospital staff. Even though Alex had a complete physical examination by his family doctor in June, he is not on the staff of the hospital where the dentist has privileges, so we went to a doctor recommended by the dentist’s office. While the doctor was kind to Alex, he seemed to be more concerned with issues unrelated to the upcoming dental procedures. We understood the need to check Alex’s heart and lungs, but the doctor’s insistence upon checking for hernias and scoliosis seemed unnecessary to us. Moreover, we were surprised that he didn’t order any blood tests. Nonetheless, the examination was completed, and we were anticipating the upcoming dental appointment at the hospital.

In the six weeks between Alex’s first appointment with the dentist and the scheduled appointment at the hospital, I had called the dentist’s office a few times with questions about the procedure. They assured me that the hospital would call us to gather pre-registration information a few days ahead of the appointment for the dental work. Since I had not heard from the hospital at all, I called the dentist’s office again and asked them if I needed to call the hospital myself to make sure they had all the needed information to confirm all the arrangements had been made. I was told that I didn’t need to call the hospital, but I could if I wanted to. To ensure everything would be smooth the next day, I decided to call the hospital and check on the arrangements; this was a good idea.

When I called the hospital, I discovered that Alex was not on the schedule for his dental work the next day; apparently someone from the dentist’s office had not notified them. Although my first instinct was to panic, the calm and understanding nurse assured me that she would call the dentist’s office, straighten out the arrangements, and call me right back. As promised, she did make all the necessary calls, made certain that Alex was on the schedule, and called me right back to let me know that everything was ready to go for the next day and answered several questions for me, as well. Things seemed to be set until the dentist’s office called me and asked me why we hadn’t had pre-procedure blood tests done for Alex. A bit taken aback, I told her that the doctor they had sent us to had not ordered any lab tests, or we would have taken care of that already. She told me what lab test needed to be run before Alex could have anesthesia, so I called the hospital nurse who had made the arrangements and asked her what we should do. After discussing options, we agreed the easiest solution would be to have the lab test run when Alex arrived at the hospital for his procedure. Once again, she made arrangements for us, setting up orders for the lab test to be done upon Alex’s arrival. Thanks to her efficiency, we seemed to be ready to go the next day.

With Alex scheduled to check in at 5:15 A.M. for his 7:00 appointment, we had to awaken in the middle of the night to get ready and to drive to the hospital, which is nearly an hour away from our home. Despite having to get up so early, Alex was good natured and enthusiastic about going to a new place. Ed and I were thankful that he wasn’t nervous or scared, which was a blessing to us, because we were a mix of both emotions. At the hospital, we were impressed with how friendly and pleasant we found everyone to be, and Alex was amazingly cooperative. He handled his blood test and the insertion of an IV without flinching or complaining, and we were proud of him for being so brave. He took everything in stride and just seemed to view the experience as an adventure. The fact that the television in his room had a channel devoted to the stock market, one of his interests, helped keep him occupied while he waited was also a blessing. Fortunately, everything ran on time, and his dental work was completed within twenty minutes with no problems. He handled the anesthesia well and came back from the recovery room a bit drowsy but in good spirits. Of course, we were relieved that the dental work was done and that he was fine. However, we were not certain what exactly had been done because his dentist didn’t talk to us before Alex was released, and the nurses were not sure, either. They suggested that we call the dentist’s office to find out exactly what had been done while Alex was there. To be honest, I couldn’t believe that they had filled cavities in the short time he was there and was upset if they had put him under anesthesia just to clean his teeth. However, I planned to call the office to find out for certain.

Yesterday, I called the dentist’s office and discovered that during the procedure they had cleaned Alex’s teeth thoroughly, taken x-rays, and filled two cavities, one upper and one lower. Since he had done well and all the work had been completed, they don’t need to see him for another six months. Apparently, the dental work had been essentially painless because Alex never complained of any mouth discomfort, and he had no problems eating afterward. His only complaint was a slight sore throat and nose from the breathing tube they had inserted, but he handled that well, too. While we hope that Alex can once again go twenty-one years without having any more cavities, we are thankful that the arrangements were straightened out at the last minute and that God took care of him, making everything go smoothly. Moreover, Alex still thinks going to the dentist is fun. If that’s not miraculous, I don’t know what is.

“Your teeth are as white as sheep that are freshly washed. Your smile is flawless, each tooth matched with its twin.” Song of Songs 6:6

Alex the Low Talker

For some reason, Alex has developed the habit of speaking so softly we can barely hear him at times. Since spoken language has always been quite difficult for him, I suspect that he is self-conscious about the way he talks, which may be why he speaks in such a quiet voice. His behavioral therapist has been working with him the past few months, encouraging Alex to “turn up the volume” so that he can be heard easily. While his quiet voice seems preferable to one that is too loud, trying to hear what he’s saying can be a challenge. His therapist has impressed upon us the importance of getting him to speak up so that he can convey his needs, wants, and ideas to other people who may not be as patient as Ed and I are about trying to figure out what he’s saying. In many ways, Alex reminds me of a character from the television comedy Seinfeld, a woman who spoke too softly and whom they nicknamed “the low talker.”  Since the other characters on the show couldn’t understand what she was saying, they simply nodded and smiled, which led to Jerry unwittingly agreeing to wear a “puffy shirt” that she had designed. The other day, Alex said something to me that I couldn’t hear, and I just agreed with him to appease him. When my mom asked me what he had said, I told her I wasn’t sure, but I thought I might have agreed to wear a puffy shirt the first day of school. [For a clip from this Seinfeld episode, click here.]

While having closed captioning beneath Alex as he speaks would be very helpful, we must instead tell him to repeat what he has said in a louder voice and try to figure out what he’s trying to tell us. The results of these efforts are a cross between moderately frustrating and very amusing. Ed and I have developed a sequence of steps to decipher Alex’s code. Sometimes we must go through the entire process, and sometimes we’re able to figure out what he’s saying on the first try. Thankfully, Alex remains remarkably patient as we try to understand him, never getting upset that we don’t know what he’s saying and often finding our attempts hysterically funny. We frequently see him in the back seat of the car, the setting for most verbal misunderstandings, laughing at us because our guesses at what he’s said are apparently way off base. Nonetheless, we keep trying to keep the lines of communication open with him, leading to a process that could be a new game show: Guess What Alex Just Said.

1. First, we ask Alex to repeat what he said a little more loudly. Although he usually complies with this request to repeat, he often repeats in the same low volume as the first time. Sometimes we can figure out what he’s saying by reading him lips.

2. Next, we madly search for context clues. Is he holding something that would help us figure out what he’s saying—a magazine or book, for example? Did he see something out the car window that caught his attention? This is the part of the process where Ed and I usually work as a team, putting our ideas together cooperatively to solve the puzzle.

3. Prior experience can sometimes help us understand what Alex is saying. For instance, he finds the recent closing of a local appliance store interesting, so whenever we pass that store, he’ll jokingly tell us that he wants to go to Sun Appliance. This has become so routine that as soon as the sign for the store comes into view when we’re driving, we’re ready with a response for him.

4. To make hearing Alex easier, we remove all sources of background noise as much as possible. Ed and I have become adept at quickly turning off the car radio and air conditioner to remove any noise that competes with Alex’s quiet voice. Sometimes we also tell him to wait until we get to the next stop sign or stop light so that we can hear him over the car’s motor. Instead of simply raising his voice so that he can be heard, Alex prefers to wait until the next intersection where he won’t have to compete with the running motor.

5. Besides his issues of talking quietly, Alex has articulation problems that make understanding him difficult at times, even when he does speak in a normal tone of voice. Fortunately, he can spell words aloud easily, and we often ask him to “Spell it” so that we can decipher what he’s saying. This is a good strategy because he likes to spell words aloud, and Ed and I have become so good at this game we can frequently figure out the key word halfway into the spelling.

6.  Often, Ed and I just start guessing, using what clues we have at hand and what we think we are hearing him say. This often leads to funny misunderstandings that Alex finds hysterical. The other day in the car, he was trying to tell us what he wanted for dinner, but I thought he was talking about people instead. I guessed Grandpa and game show host Bob Barker, neither of which were anywhere near what he was saying. When we finally figured out what he was saying, we then understood why he found my guesses so amusing. Many times, as with the spelling strategy, Ed and I work together in our guessing, and between the two of us, we can come up with what Alex is saying.

Although trying to figure out what Alex is saying in his quiet voice requires some patience, understanding, and even creativity, we are thankful that he not only wants to communicate with us verbally, but that he also is patient with us as we try to understand him. As much as he seems to find our failed attempts funny, I even wonder if he deliberately speaks softly just to see what we will do. Considering that nearly half of all people with autism are essentially nonverbal, we realize what a blessing it is to have a child who can speak. As we continue working with him to raise his voice so that he can be heard, all three of us find humor in the Guess What Alex Just Said game where we all win when we finally understand what he wanted us to know.

“They longed for me to speak as people long for rain. They drank my words like a refreshing spring rain.” Job 29:33

Why Autism Moms Act the Way They Do

This week, Laura Shumaker, who, like me, is the mom of an adult son with autism, published a blog article entitled “Why Autism Moms Act the Way They Do.” [To read this article, click here.] She described crying spontaneously, joining book clubs but never attending, being socially awkward, and bristling when people compliment her or minimize her situation. While I appreciate her candor in sharing her feelings, I found that as an autism mom I don’t share any of those experiences. A common saying about people with autism is that if you have met one person with autism, you have met one person with autism. Perhaps the same could be said for their moms: if you have met one autism mom, you have met one autism mom. On the other hand, I have found that the autism moms whom I have met primarily through online support groups or through introduction by mutual friends seem to share many of the same qualities I have developed as an autism mom. While I know my experience may be different than others, here is my version of “Why Autism Moms Act the Way They Do,” or more accurately, why this autism mom acts the way I do.

1. Guilt is a big motivator for me. I’m always thinking of what I should have done, what I didn’t do, what I should be doing, and whether I’m doing what I should be doing. I’m often my own worst enemy wondering whether Alex’s autism is somehow my fault or whether I could have done something to make the obstacles he faces easier. My mom, who knows me better than anyone and loves me more than anyone, constantly tells me to get off my case, meaning that I need to stop feeling guilty for what I’ve done or not done. However that same guilt makes me constantly seek ways to make Alex better not just to help him but maybe to atone for anything I think I’ve done wrong along the way.

2. Worry is a constant nagging feeling for me. Along with feeling guilt, I spend a lot of time fretting about Alex’s behavior, health, and future. Do I need to be stricter with him and hold him to higher expectations? Do I need to cut him some slack and be more patient with his issues? Should I take him to the doctor, or should I wait and see if symptoms improve on their own with time? What do I need to do to prepare him for life? What will happen to him after I’m dead and gone (hopefully after living a long and productive life as his mother)? These feelings of uncertainty haunt me often.

3. People who complain constantly about their typical children annoy me. When parents of “normal” children whine about their kids not doing their homework or having messy rooms or being lazy, frankly I want to shake them. Do they realize how lucky they are to be dealing with rather minor issues? Certainly, I can understand their frustration and wanting their children to be the best that they can be, but I would be thrilled if my biggest concern were Alex’s messy room. When parents gripe about their kids, I simply bite my tongue and say nothing. I suppose that having a special needs child helps put things into proper perspective.

4. Research is my favorite pastime. Thanks to the Internet, I have access to all kinds of medical studies and data, as well as an opportunity to compare notes with other autism parents around the world. Many of the things I’ve learned through research have been beneficial to Alex, and I’ve also been able to share what I’ve learned with other parents who are dealing with similar issues. Through my reading of various medical publications, I have learned terminology that allows me to communicate effectively with Alex’s doctors. His current doctor seems to be pleased, for example, when I mentioned gamma linolenic acid as an anti-inflammatory essential fatty acid after he suggested evening primrose oil for Alex. When I ask questions or make comments that include medical jargon, he enthusiastically nods his head and says, “Exactly!” that makes me think he enjoys our conversations almost as much as I do. I’m thankful that he seems to appreciate the research I’ve done over the years and is always willing to discuss ideas with me to ease my worries and guilt.

While I can only speak for myself, I suspect that I’m not the only autism mom who exhibits these characteristics. Moreover, I also suspect that some of these qualities are common to all moms. A few weeks ago, I enjoyed a milkshake moms’ night out with two of my close friends, one of whom is the working mother of an infant and the other who is a stay-at-home mother of two young children. Even though our kids are at very different levels of development and our balance of career and family are different, we find more commonality than difference. All three of us share a devotion to our children that surpasses anything in life. We worry about them, feel guilty about things we shouldn’t as we question our choices, find whiny parents annoying, and search the Internet and books for guidance in raising our kids. Motherhood is always challenging; autism just adds a few unique challenges. However, through the years, dealing with obstacles has developed my faith in ways I could never have predicted as I continue to learn to choose faith over fear, easing guilt, worries, frustration, and the intense need to know why things happen. While I constantly pray for Alex’s healing, I am thankful for the faith that sustains me as well as the reassurance that in the end everything will be all right.

“Let us think of ways to motivate one another to acts of love and good works.” Hebrews 10:24

Dealing with Change

A common characteristic used to describe people with autism is that they possess an insistence on sameness and a resistance to change. In fact, if one Googles “resistance to change autism” (as I did out of curiosity), over one million results can be found. As I have mentioned in previous blog entries, Alex is remarkably flexible about change and spontaneity. While he enjoys the predictability of some routines, he is also willing to try new things, even on the spur of the moment. However, I, who am not on the autism spectrum, resist change mightily and need time to adjust and plan before I can jump into something new. This week I was reminded of the difference between Alex and me in this respect.

For the past year, Alex has been working with a behavioral therapist who comes to our house each week for an hour. Through a variety of activities, the therapist addresses Alex’s issues, such as his anxiety and impulse control, and also works with him on social skills that autism impairs, such as respecting personal space and making conversation. We have been pleased with the progress we have seen Alex make as he has learned some calming techniques, self-control, and interpersonal skills. Moreover, he looks forward to these weekly sessions and considers his therapist his friend.

When we began behavioral therapy a year ago, he was first assigned a therapist who interacted quite well with him. However, in March, we found out she was moving out of state because her husband had taken a new job. She assured us that she would help Alex make the transition smoothly by bringing his new therapist to shadow a few of their sessions so that he could meet her and so that she could learn the routines they had established. As promised, the transition period gave Alex and his new therapist time to get to know one another and adjust nicely before she took over the therapy sessions on her own.

Although I was a bit concerned about how Alex would adapt to the new therapist, he clearly embraced the change immediately and eagerly looked forward to working with her. Her kindness, enthusiasm, and humor endeared her to him and us right away, and we felt blessed that she had been chosen to work with him. In fact, I commented that she was a gift from God because she had come to us all the way from Turkey. Recently, we learned that she had come to the United States to get her master’s degree and had planned to return to her home country, but she met the man who was to become her husband, an American from this area, and decided to complete her doctoral degree and live here permanently. For all those things to fall into place so that she could work with Alex, a divine plan had to be in order.

Listening to their therapy sessions from the next room, I not only appreciated that she made Alex accountable for his behavior and set reasonable expectations for him, but that she also praised him freely, often telling him in her delightful Turkish accent, “Alex, you are so smart and funny.” Anyone who is kind to Alex holds a special place in my heart, after all. When she took a trip back to Turkey to visit her family this summer, she excitedly told him about her experience of seeing turtles coming from the Mediterranean Sea to lay their eggs in the sand, knowing that Alex has a special interest in turtles. She even brought him a souvenir from this trip, a small realistic-looking turtle that she said made her think of him while she was on vacation. Of course, he was pleased that she brought him a gift, but he was even more pleased to see her after she returned from her trip.

This week, we found out that Alex’s beloved therapist has been promoted to a supervisory position and will only be working with him for a few more weeks to help him transition to a new therapist. I have no doubt that my face clearly registered the deep disappointment I felt when she told me that she would be no longer be working with Alex once she begins her new job. While I’m pleased that her excellence has been rewarded with a promotion and know that she will do a wonderful job in that capacity, I’m sad to lose her as Alex’s therapist and will miss her weekly visits.

Upon meeting his new therapist, who will be observing sessions during the transition stage, Alex seemed quite receptive to her, smiling at her often and asking her his usual litany of questions to learn more about her, including how tall she is and how many teeth she has. Apparently his current therapist had prepared her for this interrogation, as she laughed and willingly provided Alex the statistics that he needs to quantify her in his mathematical mind. While I’m mourning the loss of his current therapist, Alex is looking forward to getting to know someone new, even though I’m sure he will miss seeing his old friend, too. As we prepare for another change, I remember that God knows what Alex needs even more than I think I do, and I’m certain that He has allowed this change of therapists for a good reason. With that in mind and with Alex’s example of flexibility in spite of his autism, I look forward to what his new therapist will do to help him learn and grow to become the best that he can be.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

Vision

Because I am terribly nearsighted, I have worn glasses or contact lenses since I was eight years old. Although Ed’s vision is much better than mine, he has worn glasses since he was a teenager. Fortunately, Alex has always had more acute vision than either one of us, spotting small details at distances and showing that he apparently did not inherit poor eyesight from us. For this reason, we have not felt the need to take him to the eye doctor yearly. We would check his eyesight informally by holding up fingers to count or print to read and felt satisfied that he could see well.

When Alex was five years old, our family optometrist referred us to a developmental optometrist who specialized in visual therapy. This eye doctor diagnosed Alex as being slightly farsighted, which he assured us was typical for children that age, and as having convergence disorder, meaning his eyes did not track together properly. He recommended glasses with prism lenses to help his eyes work together better and a little bit of magnification to help him read or do close work more easily. In addition, he suggested having the lenses tinted slightly pink (the proverbial “rose-tinted glasses”) to cut down glare and put less strain on his eyes. After selecting the most durable frames we could find, we ordered a pair of these glasses for Alex, who happily wore them thinking that he looked like beloved cartoon character Arthur. Besides wearing the glasses, the developmental optometrist had Alex doing eye exercises on a weekly basis at his office and on a daily basis at home. Within a few weeks, we noticed several big improvements as Alex’s balance seemed much better, allowing him to walk up and down stairs and curbs more easily. Also, he stopped tipping his head to look at things. Pleased with Alex’s progress, the eye doctor felt that the glasses and eye therapy had achieved what he had wanted them to do, and he believed that Alex no longer needed the glasses or the eye exercises. We were amazed by how rapidly this therapy worked and delighted with the results. I put away Alex’s little glasses, which I recently rediscovered in our linen closet a few weeks ago.

This summer, Ed and I went for our annual eye exams and found that both of us needed new glasses, and I also needed a new pair of contact lenses. Apparently, Alex felt left out of this routine, and he kept asking to go to the eye doctor. Unsure of how well he could cooperate with the exam and feeling fairly certain his eyes were fine, we kept delaying making an appointment. Finally, I decided taking him to the eye doctor was easier than listening to him nag me, and I made an appointment for him this past Monday. Thankfully, the staff was very understanding of his sensory issues, and he was quite cooperative about doing the tasks they asked of him. The optometrist explained to Alex everything he was going to do, which seemed to reassure him and allowed him to get through the appointment smoothly. As the eye doctor had Alex read aloud the letters on the eye chart, Alex easily breezed through the first several lines. However, when he got to the smaller print, he suddenly stopped. When the optometrist asked him if he could read that line, Alex told him no. Since Alex’s eyesight has always been perfect, I thought at first Alex was just being uncooperative, but he didn’t really seem like he was being difficult. After the eye doctor placed some corrective lenses in front of him, Alex began reading the small print aloud, almost excitedly that he could now see the letters he could not see before.

The optometrist’s diagnosis was that Alex’s eyes are very healthy and his vision is good at 20/30. However, he felt that Alex could benefit from wearing glasses to improve his distance vision. After his eye exam, we helped Alex pick out a pair of frames (durable, like the ones he wore at age five—even the same brand), but he seemed rather uninterested in the choices and trusted us to make the final decision. Since his eyes tend to be light sensitive, we also opted for the transition lenses that darken in bright light, allowing his glasses to also double as sunglasses, which he always wears outside. The optician took all the needed measurements and told us that the glasses would be ready in about ten days. We wondered how much Alex would pester us in that time about when he would get his new glasses.

Fortunately, Alex waited patiently for his glasses to arrive, and we were surprised that they were ready to be picked up on Friday. Once again, he handled this experience well, calmly cooperating as the optician adjusted the glasses for him, and he was content to wear them. As we drove various places over the next couple of days, he seemed to enjoy looking out the windows more and making comments on things he spotted with his improved vision. He appears to have adapted well to wearing them, even asking, “Where are my glasses?” upon awakening the first morning after he got them. While we wish his perfect eyesight had continued, we’re pleased that he had a good experience at the optometrist’s office, he has a positive attitude about wearing glasses, and his vision can be easily corrected. Once again, Alex has shown us his remarkable flexibility, despite the tendency for people with autism to dislike change, as well as his tendency to see new experiences as adventures and not something to be feared. While we often worry that he may not adapt to situations, he thankfully proves us wrong, and we are grateful that he does.

“At that very time, Jesus cured many people of their diseases, illnesses, and evil spirits, and He restored sight to many who were blind.” Luke 7:21

What I'm Doing on My Summer Vacation

Yesterday I went for my annual mammogram. As any woman knows who has been through this ritual, this test involves the emotional aspect of putting aside modesty to allow our breasts to be x-rayed along with the physical aspect of having them and our collarbones smashed in machinery to get the best image. Nonetheless, we go through this test to make certain we are healthy or, God forbid, to catch cancer in early stages. As an autism mom, I have to be healthy because my child, probably even more than others, needs me to be healthy to take care of him, even at age 21. I had to remember this yesterday as I endured rather insulting comments regarding my profession as an English teacher from the technician who was doing my mammogram, essentially telling me that teachers are bossy, kids don’t like English, and grammar is boring. Wisely, I knew not to waste time trying to convince her otherwise; raising a child with autism has made me less sensitive to criticism and smart enough not to waste time on those who do not understand. The comment that hit me hardest, however, was when she remarked how nice it must be to have my summer off. She went on to say that when children are smaller, the teacher mom can spend the summer having fun with them, and when the children are older, the teacher mom can relax and do projects around the house. I didn’t bother to mention that my son has autism, nor did I try to explain life with autism to her; she wouldn’t have understood anyway.

This week, like many weeks, found me making an assortment of phone calls for Alex, trying to get appointments arranged and checking on various things he needs. For example, on Monday I had to call the pharmacist about one of his medications that seems to be on a different refill schedule than his other medications. Thankfully, she is very helpful and pleasant, and she went back through the records to find the original prescription, confirming that I would need to call his psychiatric nurse practitioner’s office to have her authorize a refill. When I called her office, I also set up an appointment for next month for his six-months check-up. After doing that, I remembered that we already had an appointment scheduled that afternoon with the case manager who oversees his state disability funding and his behavior therapist to work on his annual report for the state to continue services. I called the office again, rescheduled his appointment for the morning instead of the afternoon, thinking that would create a busy, yet workable day.

On Tuesday, his behavioral therapist came for her weekly session, and as usual, I flew around the house making sure it looked presentable for her visit. In addition, I wrote his weekly report for her, updating her on behavioral issues to keep her apprised of his progress and any issues she needs to address with him.  On Wednesday, we took him to the dentist, which is something Alex actually enjoys “one hundred percent,” largely because his dental hygienist is wonderfully sweet and patient with him. Also, we have been blessed that Alex has never had any cavities or any other dental issues, so his visits to the dentist have just involved having his teeth cleaned and checked. Because of his anxiety issues, we hadn’t taken him to the dentist for over a year. Unfortunately, they discovered that he has some cavities in his back teeth that will need to be fixed, and the dentist wants to do this under general anesthesia in the hospital because of Alex’s anxiety and sensory issues. Although we would rather Alex didn’t need to have any work done, we agree with the dentist that this is the best way to handle the situation to avoid upsetting him.

On Wednesday, I received an e-mail from the intake coordinator from the agency where we are on a waiting list trying to get Alex into a day program. She was notifying us that she would be taking a different position within the agency and would be turning over Alex’s file to another intake coordinator. Later that day, she called me to discuss respite care services the agency could provide for us. After not having heard from her in months, I was surprised that she contacted us to offer assistance. Nonetheless, I appreciated that she explained the various services we are eligible to receive, and I was able to remind her that we were most interested in getting Alex involved in the day program, which apparently is still on hold at the moment. Fortunately, we’ve become good about waiting for this after over a year of being on the waiting list.

On Thursday, Alex’s dentist’s office called me to let me know they had set a date for his dental appointment at the hospital next month. In addition, he must see a doctor affiliated with the hospital where the dental work will occur the week prior to that appointment to make sure he is healthy enough for the anesthesia. I appreciated that she had scheduled this for us, as well, but it was the same time as the appointment I had rescheduled with his psychiatric nurse practitioner, which meant calling her office to change his appointment again to the following week. Fortunately, we are able to take care of all these various appointments before Ed and I have to go back to our teaching jobs.

On Friday, Alex decided that he needed to go to the eye doctor, probably because Ed and I have both been to the eye doctor for our annual appointments this month. Even though all evidence shows that Alex has perfect eyesight, he insists that he should have his eyes checked. After he pestered me repeatedly about making an appointment, I called the optometrist, and Alex is delighted that he will see him tomorrow morning. Ed and I are praying that Alex will be cooperative for the eye tests and that his eyes are as healthy as we think they are.

Yesterday, after my mammogram, I spent time researching a new antifungal drug Alex’s doctor has prescribed in yet another attempt to get rid of the thrush infection of his mouth that we have been dealing with for over a year. With all the medications Alex takes to keep him calm, adding anything new to the mix makes me a little nervous and sends me to websites checking for possible drug interactions. Convinced that the new antifungal should be safe, we will start that medication today and pray this will be the magic bullet that finally eradicates the stubborn candida fungus in his mouth.

Aside from my role as Alex’s personal assistant in setting up and coordinating appointments with various professionals who help him, I’m also his social director who comes up with daily outings to keep him entertained and makes sure he has a fun summer. This week, we went to two outdoor band concerts in the park, visited Bass Pro Shop for the first time, had dinner at Taco Bell twice so he could enjoy his favorite Cantina Bowl with rice and beans, took him to an arcade to play video games of Wheel of Fortune and Deal or No Deal, walked with him on the trails of a nearby nature preserve, got him apple chips and a soft drink at the Target Café, and took him to the Indiana Dunes State Park beach where he waded in Lake Michigan. Certainly, we had a busy week, but an enjoyable one, too, even thought it was not the relaxing/home project one suggested by the x-ray technician who did my mammogram. However, this week reminded me that I must be at my best so that I can take care of Alex’s needs, and I’m thankful for my health, even if that means enduring those annoying mammograms.  While I wish my house were more organized and that I had more time to read for enjoyment instead of research, I am grateful to have my summer “off” so that I can devote more time to Alex, making sure that he, too, is healthy and can enjoy life to the fullest.

“Work willingly at whatever you do, as though you were working for the Lord rather than for people. Remember that the Lord will give you an inheritance as your reward, and that the Master you are serving is Christ.” Colossians 3:23-24

Staying on Track

Many parents whose children have autism note that their children have an intense fascination with trains. When they are little, they often have great affection for the Thomas the Tank Engine cartoons, books, and toy trains, and when they are older, many of them memorize schedules for subway trains. This interest in trains often remains unclear, as many of these children cannot express why they favor certain things. When Alex was little, he enjoyed watching the Thomas the Tank Engine cartoons, and I wondered if the soothing voice of Mr. Conductor mesmerized him. Thanks to his uncle, Alex had a wonderful set of trains that featured Thomas and his friends. I often suspected that he especially liked them because they had numbers, which he holds dearly, on them. Perhaps some children appreciate that they line up orderly, a trait many children with autism find interesting. Lately, I’ve begun to think that Alex’s interest in the toy trains may be linked to his one-track mind.

Studies show that other psychological conditions often co-exist with autism, such as social anxiety disorder or obsessive-compulsive disorder, more commonly known as OCD. These so-called co-morbid conditions that frequently accompany autism may cause challenging behaviors in addition to the impaired language and social skills common in autism. When Alex was eleven years old, we first noticed that his OCD behaviors were becoming more intense and needed to be addressed. His primary obsession was the concept of time, and he would repeatedly ask us what time it was, even though he knew how to tell time. Even after we would repeatedly tell him what time it was, he compulsively would run frantically to a clock to check the time as though he needed visual as well as verbal confirmation. When we discussed this behavior with our family doctor, she understood our concerns and started him on a low dose of the SSRI medication Prozac to address his OCD behaviors. Within several days, we saw a great improvement in his behavior, as Alex no longer needed to ask us over and over what time it was; instead he would calmly check the clock once when he wanted to know what time it was. This came as a huge relief to us to see the calming effect the medication had upon his behavior.

Last year, his psychiatric nurse practitioner decided that Prozac had lost its ability to keep his OCD in check over time and switched him to another SSRI, Zoloft, which generally seems to keep him calm and manage his behavior well. However, when Alex becomes anxious, he will revert to asking the same questions over and over, which tests Ed’s and my patience to the limits. Most of the time, Ed and I are remarkably patient with Alex; however, patience is something we have developed though the years, as I don’t think either of us are naturally patient people. At least, I’m not. Nonetheless, in dealing with Alex’s sometimes challenging behaviors, we have learned that losing our patience with him can be akin to pouring gasoline on a fire. Besides, most of the time that he is trying our patience, we know that he really can’t help it.

Just as when he was younger, Alex focuses upon time and when things will happen. Even though he knows the routines we have created to ease his anxiety and have posted a daily schedule on the refrigerator for him to consult, he still constantly asks us questions about when lunch, dinner, bath time, and bedtime are. He also asks us throughout the day when we are going places and when he can weigh himself. Knowing that he needs us to answer these questions to ease his anxiety, we patiently answer him several times during the day. In case he is just making conversation, we will sometimes vary the discussion by turning around the question and asking him, “When IS bedtime?” Of course, he always knows the answer to the question because he has heard it thousands of times from us.

Although I would like to say that Ed and I always answer these repeated questions calmly and pleasantly, I have to admit that sometimes, being human, we just lose our patience with him. This week, Alex became overly excited about going places and kept asking us, “How ‘bout going places?” to the point I was ready to hand him keys to my car and tell him to go. However, since he can’t drive and I couldn’t find my keys, which added to his frustration and my own anxiety, this was not going to happen. As I frantically searched through my purse and even dumped the contents on the couch, only to discover later they were on the kitchen table, I finally yelled at him, “Shut up, Alex!” Because I rarely say anything that harsh to him, he was stunned for a moment and stopped questioning me. While I’m not proud of losing my temper with him, at least I had vented my frustration, and my outburst made him stop badgering me long enough to find my keys. Another day this week, Alex was anxious because I had gone to the eye doctor, and he kept asking Ed when I would be home. Even though Ed answered him several times, Alex was not satisfied, and he continued asking him again and again. Finally Ed said to him pleadingly yet more politely than I had earlier in the week (or so I’m told), “Alex, please be quiet!” Fortunately, our annoyance did not intensify Alex’s agitation; in fact, he usually seems amused by our rare outbursts, which makes me wonder whether he provokes us just to get a reaction.

While I’d like to always remain as calm and collected as Mr. Conductor from the Thomas tales, sometimes I find myself “cross” like the tank engines of the stories. In fact, at times our life with autism could use Ozzy Osborne’s “Crazy Train,” with its lyrics, “Crazy, I just cannot bear I’m living with something that just isn’t fair,” as our theme song. Nonetheless, Ed and I continue to keep the train on schedule, as Alex keeps it on his comfortable track, always checking the time at regular intervals, chugging along until we reach our destination of healing. All aboard!

“We also pray that you will be strengthened with all His glorious power so you will have all the endurance and patience you need. May you be filled with joy, always thanking the Father. He has enabled you to share in the inheritance that belongs to his people, who live in the light.”  Colossians 1:11-12