Sunday, September 29, 2013

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

Sunday, September 22, 2013

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

Sunday, September 15, 2013

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

Sunday, September 8, 2013

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 3rd, 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

Sunday, September 1, 2013

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