Out of Darkness Comes the Light

 

This past week, I have been on spring break from teaching, yet the rest of our family’s schedule has basically remained the same. Ed, who was on spring break from teaching at the university earlier in the month, had to go to work in the afternoons, and Alex’s schedule of afternoon therapies continued as usual. Trying not to interfere with the morning routine Ed and Alex have established, I stayed out of their way. Despite my best attempts not to rock Alex’s boat, he seemed to find my morning presence annoying, acting irritable and even feisty with me at the time when I would normally be coming home from school. As I tried to help him get ready for his various afternoon appointments, he did not want to cooperate and preferred trying to argue with me instead.

One morning I walked away from him and found him waiting outside the bathroom door for me, ready to continue a disagreement I thought I had already settled. Usually, Alex is eager to see his support team members so that he gives me no trouble when I remind him that he needs to brush his teeth and comb his hair, but this week he wanted to balk at everything I told him to do. To let me know his displeasure, he would play the passive-aggressive game of simply staring at me when I told him to do something or grabbing my hands to get my attention. Using all the tools his therapists have given us, I would calmly redirect him with the reminders of “making good choices” and “respecting personal space.” When that didn’t seem to move him physically or emotionally, I resorted to my no-nonsense middle school teacher voice and informed him that he would be grounded for the day if he didn’t follow my directions.

Of course, in my analytic mind I’ve also been trying to figure out why Alex decided to challenge me when he is normally docile and compliant. Could this be a developmental phase he needs to go through? Was he unhappy that his typical schedule was changed because I was home instead of at work? Were there environmental changes, such as air pressure, the full moon, or allergies, bothering my human barometer son? Was he not feeling well, perhaps irritated by the discomfort of thrush in his mouth again? After trying to ask him questions when he was not moody, I could get no definitive answers for why he was giving me a hard time, other than because “Mommy is shorter than Alex.” Since that isn’t going to change, I decided to look in his mouth and found the telltale signs of yeast overgrowth, called his doctor for a prescription of antifungal medication, and gave him Diflucan. Soon, he showed signs of healing and thankfully became more pleasant with me.

I have been told that people with Alzheimer’s disease and children with autism show hostility to the person who loves them the most because they know that person will forgive them, no matter what. Alex knows that he can always say he is sorry for his behavior, and I will always readily accept his apology and never hold a grudge. He knows that my love for him is unconditional. He also knows that about his dad, but apparently, I get the “favored” treatment because “Mommy is shorter than Alex.” Nonetheless, he and I share an unbreakable bond that allows us to enjoy each other’s company the vast majority of the time and to work out our differences. I truly believe that Alex knows that I always have his best interests at heart, even when he’s not happy with me for pushing him to be his best. He also knows that I will cheer him on every step of the way, and I will do everything in my power to protect him from harm.

Last weekend, Alex and I enjoyed watching a television presentation of The Passion, a modern-day interpretation of the last week of Jesus’ life. As we watched the events leading up to the crucifixion and the resurrection, Alex enjoyed the music the most, swaying and trying to sing along to the contemporary songs used to tell the story. However, I found myself drawn to the portrayal of Mary, Jesus’ mother. Being raised in the Protestant Church, I viewed the importance of Mary only at Christmastime as the young woman who gave birth to the Messiah. However, The Passion made me think about her role as the mother of an adult son facing tremendous suffering, and I wondered how she found the strength to watch her son suffer in pain and die, even knowing that he would be resurrected. According to the Gospels, she was there when Jesus was crucified. Only in the Gospel of John do we see Jesus acknowledge her as he is dying: “When Jesus saw his mother standing there beside the disciple he loved, he said to her, ‘Dear woman, here is your son.’ And he said to this disciple, “Here is your mother.’ And from then on this disciple took her into his home.” (John 19:26-27)  Before he died, Jesus wanted to make sure his beloved mother, who was there to support him to the end, would be all right. The tenderness of that moment moves me deeply.

On Thursday, after helping Alex through some unexplained anxiety, I took him to music therapy, where his therapist was able to further reassure and calm him. As I waited during their session, I could hear the soothing words of the familiar Beatles’ song, “Let It Be”: “When I find myself in times of trouble, Mother Mary comes to me, speaking words of wisdom, let it be. And in my hour of darkness, she is standing right in front of me, speaking words of wisdom, let it be.” In those lyrics that Alex and his therapist only occasionally include in their therapy time, I also found comfort. “And when the night is cloudy, there is still a light that shines on me, shine on until tomorrow, let it be.”  Despite the occasional setbacks––the cloudy nights––the light of hope pushes me forward to help make Alex better. Sometimes all I need to do is wait––to let it be––until the time is right.

As we celebrate Easter today, I’m reminded of the hope we find in the resurrection. Before his crucifixion, Jesus prepared his disciplines for what was to come, saying, “Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.” (John 16:22)  From the grief of Good Friday, Jesus fulfilled that promise to return, bringing the joy of Easter Sunday through the resurrection and giving us eternal life through his sacrifice. Although I don’t know what the earthly future holds for Alex, I am certain who holds his eternal future, and I can be sure that He, who gave His only son, has unconditional and perfect love for my son, which gives me peace.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

Autism and Health: A Challenge

 

This month, a comprehensive analysis was published highlighting the problems parents have finding help for their children with autism. Jane Willis and Yara Evans from Queen Mary University of London released the findings of their surveys from two years ago in a thirty-page report entitled “Health and service provision for people with Autism Spectrum Disorder: A survey of parents in the United Kingdom, 2014.”  To read this full report, please click here.] At the time they surveyed 264 parents and caregivers about their experiences of caring for children with autism, more than 600,000 people with autism were living in the United Kingdom. As I read the report, I noted that parents in the United Kingdom face the same issues that autism parents encounter in the United States.

Under the topic “Challenges faced and severity of issues,” more than 80% of the parents listed five specific challenges out of a list of 22, and the majority described all of these issues as “very significant.” These concerns included the following:

1.  anxiety/fearfulness/avoidance behaviors

2.  irritability (low mood, oppositional behaviors, tantrums, lack of flexibility)

3.  sensory sensitivity (light/sound/touch/abnormal pain sensitivity)

4.  agitation/stimming behaviors

5.  sudden negative changes in behavior

Although behaviors appear to be the primary challenges parents face, the survey indicates that 87% of parents sought treatment from health care professionals for various issues and often found little or no help. The surveys revealed that parents consulted doctors for help with dietary and nutritional issues, gut issues, behavioral issues, sleep problems, toileting issues, seizures, and other issues without getting satisfactory assistance. Parents noted that many doctors lack knowledge about autism, and some did not take their concerns seriously, dismissing them as “just autism.”

With little support from medical professionals, parents of children with autism often seek other interventions, trying to help their children. This survey found that ninety percent of the parents had used dietary interventions or modifications for their children with autism. The top two diets used were the gluten-free diet (94% of those who used dietary modification) and the casein-free diet (90% of the parents who implemented dietary changes). Some parents use a combination of dietary modifications; we have used the gluten-free and casein-free diet with Alex for seventeen years. Of those parents who used dietary interventions, 92% reported some level of improvement (life-changing, significant, or slight) in their children with autism. Some of the benefits of dietary intervention that parents noted were improved communication skills, better eye contact and sociability, calmer and more compliant behaviors, improved sleep, greater focus, and fewer allergy and digestive issues.

In addition to dietary changes, 90% of the parents in this survey indicated that they had used nutritional supplements with their children. The four types of supplements most used included fish oils/essential fatty acids, vitamins, digestive and gut support, and minerals. Of the parents who used nutritional supports, 87% noted improvement at some level. These benefits are similar to those of the dietary interventions, such as better behavior, including being calmer and more focused, improved eye contact, and fewer digestive issues. Interestingly, parents who used nutritional supplements reported using more than one; in fact, nearly half used 6-10 supplements. Several of them also mentioned using dietary intervention along with nutritional supplements and felt that both had helped their children.

Besides dietary and nutritional interventions, parents also relied upon traditional medicine with 62% of parents reporting their children had been given prescription medications. The top three types of prescriptions listed are antibiotics, anti-fungals, and anti-virals. Considering that children with autism often have immune system issues, these medications would be necessary to help them deal with various types of infections. Parents generally found these prescriptions to be helpful, as 72% reported some level of improvement in their children after taking the medicine.

Despite the success of these medications, many parents of children with autism also seek alternative therapies to help their children: 72% of those surveyed indicated that they had tried alternative methods, and 87% of those parents reported some level of improvement. From a list of 33 different alternative therapies (several of which we have tried with Alex at one time or another), the top alternative therapies used included the following: homeopathy, ABA (Applied Behavior Analysis), HBOT (hyperbaric oxygen therapy), and CST (Cranial-Sacral Therapy). Those parents who used alternative therapies cited benefits, such as improvement in sensory issues and reduced anxiety.

Finally, the survey asked parents what changes they would like to see to assist them in helping their children with autism. Their top five recommendations for changes needed include the following:

1.  Improved relationships between parents and professionals

2.  An end to discrimination (treating children with autism differently than typical children and recognizing their medical needs) in service provision

3.  A better understanding of autism

4.  Better education and training for professional staff

5. More thorough investigations of the problems involved (such as recognizing that behaviors may have a medical cause)

After reading this comprehensive and insightful report, I was impressed with the information the researchers and the parents shared. Clearly, parents are not getting the support they need from the majority of medical professionals, who lack knowledge of autism and who may see it only as a psychological issue instead of a medical condition that can be treated to improve behaviors. With the increasing rate of autism, medical professionals need training to understand various issues concerning autism so that they may treat their patients appropriately. In the meantime, parents must educate themselves in alternative methods and therapies so that they can help their children get better. Our children deserve no less.

“An unreliable messenger stumbles into trouble, but a reliable messenger brings healing.” Proverbs 13:17

Chatting with Alex

 

When Alex was little and had very limited language, we prayed for the day when we could carry on a conversation with him, and we worked hard on his speech skills, hoping to make that goal a reality. The other day, his behavioral therapist commented that she has noticed significant improvement in Alex’s speech and specifically mentioned that his sentences have become much longer as these skills have developed. What is also notable is that he wants to interact with us and tell us what he has thought or observed; often he wants to tell us something he finds interesting. Sometimes, he’ll come running up or down the stairs to find us and eagerly share something that’s on his mind.

Since speech still does not come easily for Alex, he often relies upon familiar favorite topics, especially those related to numbers, such as dates, ages, prices, and statistics. He also likes the predictable, so our conversations often resemble a scripted comedy routine, much like the “Who’s on First” bit by Abbott and Costello. While I suspect that my role is the straight man, Alex, the funny guy, seems to find our banter quite amusing and usually walks away afterward smiling and chuckling. Even though we might have essentially done the same script one hundred times or more, creating a sense of déjà vu, he still finds the conversation funny every time.

Usually the catalyst for our chats lies in the appearance of a number that has significance to Alex. For example, when the thermometer registers sixty-three degrees, Alex lights up and engages me in a routine discussion about the heights of his female relatives.

Alex: “Sixty-three! That’s like Mommy’s, Aunt Tammy’s, Aunt Babs’, and Aunt Pat’s height in inches!”

Me: “That’s true!”

Alex: “Is Nanny 5’1 ½” or exactly five feet and 15/16” tall?”

Me: “What do you think?”

Alex: “Exactly 15/16.”


Another trigger number for Alex is twelve, which sends him on a nostalgic journey to childhood along with some musing about another interest, the sound of people’s voices. He refers to higher pitched voices, such as those of children and some women, as “little voices,” which he finds pleasant.

Alex: “Twelve! [Referring to himself in third person] Alex had a little voice when he was twelve. That’s like the number of hours in a half day.”

Me: “That’s like the number of eggs in a dozen.”

Alex: [Cousin] “Hannah had a little voice until she was eleven. Why does Mommy say she was ten?”

Me: “I like to round numbers.” Alex finds my mathematical carelessness amusing.

Dates hold a special place in Alex’s heart because he loves calendars and has a gift for memorizing special dates, such as birthdays. When he hears the mention of dates from the past on the news or on Jeopardy, he immediately associates the year with something he remembers fondly.

Alex: “2000! That was the first year that began with a two.”

Me: “That’s true.”

Alex: “Gas prices were $1.04 in 2000.”

Me: [Teasing him]“Approximately or exactly?”

Alex: “Exactly!”

While numbers usually move him to begin a chat, sometimes a word that he associates with a number can also motivate him to engage me in conversation. He has a fascination with Phoenix, Arizona, probably because its climate is so different from ours. When he hears it mentioned on television, he and I go into the following routine. (Since today’s NASCAR race takes place in Phoenix, I anticipate that he and I will repeat this discussion at least a dozen times this afternoon.)

Alex: “Phoenix! It gets hot in Phoenix.”

Me: “Yes, it does get hot in Phoenix.”

Alex: “How hot?”

Me: “Around 100 degrees in the summertime.”

Alex: “One hundred degrees or 112 exactly?”

Me: “Exactly 112 degrees.” Satisfied that he has trained me in data precision, he will smile.

Yesterday evening, we went to one of our favorite family restaurants, where the hostess, Kayla, and Alex are on a first-name basis because she always engages him in friendly conversation. Even though he didn’t have a script for their chat, he managed to answer her questions and make his feelings clear.

Kayla: “Alex, would you give your meal five stars tonight?”

He thinks about this seriously.

Alex: “Four point five.”

Kayla: “Four point five?”

Alex: [Trying to make her feel better] “That’s ninety percent.”

Kayla: “What could make it five stars next time?”

Alex: “Serve shrimp.”

Kayla: “If I give you a whole plate of shrimp next time, what will you rate it?”

Alex: “Five stars.”

Although words still do not come easily to Alex, we are thankful for the progress that he has made through the years and for the confidence he is developing in his ability to express himself, even in unscripted situations. As much time as he spends thinking, reading, and mulling over details, we believe that he probably has a lot more to say. In the meantime, we enjoy our conversations with him, even those we have had numerous times with him, knowing how much he enjoys talking with us and other people. As God continues to heal Alex, we wait with patient anticipation, knowing that we will be rewarded when Alex’s voice can freely speak the words he wants to say.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Perceptions of Children's Mental Health Issues

 

Yesterday I ran across an interesting online article published this week by the Huffington Post entitled “Why Every Parent Needs to Start Caring About Children’s Mental Health.” The author, Angela Pruess, a child and family therapist and a special needs parent, notes the stigma often attached with mental health conditions and emphasizes the need for greater understanding and awareness. [To read this article, please click here.] She explains that she has observed stigma both as a therapist of children and as the parent of a four-year-old daughter with anxiety and sensory processing issues. Perhaps if other people were less judgmental and better informed, she suggests, parents of children with mental health issues would be less ashamed and embarrassed.

The stigma associated with mental health issues that the author describes came as no surprise to me as the parent of a child with autism, a condition described in detail in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. In addition, Alex has also been diagnosed with anxiety and obsessive-compulsive disorder, two condition often associated with autism that are classified as mental disorders. While we have chosen to be candid about Alex’s condition, hoping to help other parents like us and bringing awareness to those unfamiliar with autism spectrum disorders, some parents keep their children’s condition secret, perhaps because of the fear of stigma. Some parents never use their children’s names in writing or speaking about them, using nicknames or pseudonyms, and others even hesitate to use the term autism when describing their children’s condition.

What did surprise me about this article was the statistic the author provides regarding the frequency of mental health issues in children. She cites research from the National Institute of Mental Health that shows “just over 20 percent (or 1 in 5) of children, either currently or at some point during their life, have had a seriously debilitating mental disorder.” Of course, the rapidly increasing rates of autism could be part of the reason for this staggering statistic. This would mean that in a typical class of twenty-five students, five of them would be classified as having “a seriously debilitating mental disorder.” While that may seem unlikely, I have noted in my more than thirty years of teaching seventh grade in public schools a significant increase in the number of students who do have serious issues.

In describing the stigma associated with mental health disorders, the author asks an excellent question: “Where exactly does this disconnect happen in our minds, allowing us to validate diseases and treatment of the body, but not a disease of the brain?” Those who have mental health conditions typically do not receive the same compassion that those who have chronic health conditions do. In addition, the author mentions uninformed people offering opinions on “overmedicating” children with mental health issues. However, these same people would likely never question giving children with diabetes insulin or treating children who have cancer with chemotherapy. Those whose nervous systems do not function properly need treatment and compassion, just as those who have any other type of illness.

In describing her own daughter and the issues she faces, the author asserts that she has great hope for her daughter and her future. Specifically, she notes that she hopes that her daughter “won’t be seen as ‘less than’ for a condition that was part of her genetic wiring just as much as her blonde hair color was.” While I share this same maternal hope for my son, I don’t completely believe that genetic wiring is solely responsible for why Alex’s brain functions differently. Moreover, I believe that the increase in the number of children with mental disorders is directly linked to toxins in our environment. While these children may be genetically susceptible to illness that affects their brains, assaults to their nervous systems from toxins in the air they breathe, the foods they eat, and the heavy metals injected in them through vaccines ultimately disrupt their chemical balances. These problems likely begin in their guts, which have recently been found to be critical to the immune system, and eventually impact their brains. What appears to be a behavioral issue more than likely stems from a physical condition. Perhaps instead of delineating mental health conditions as separate from physical ailments, modern medicine should recognize that they all have similar sources: disruptions of the typical body functions.

Specifically, we know from extensive testing that Alex suffered from heavy metal toxicity, and we treated him with chelation therapy in which sulfur pills bonded with the toxic metals of arsenic, aluminum, and mercury to remove them from his body. In addition, tests revealed that he has sensitivities to dairy products and glutens, which we have removed from his diet since he was seven years old. Also, he has struggled with yeast overgrowth in his digestive tract that we have treated for many years with a variety of anti-fungal medications and supplements. When he has yeast flares, his behavior reflects this illness, notably through his increased anxiety and OCD. Consequently, what may look like a behavioral problem could actually have a physical, rather than psychological, cause.

My belief in physical causes of mental health issues also comes from personal experience as someone who has dealt with anxiety and panic attacks throughout my life. The most intense phases of anxiety were during adolescence and in my mid-forties, which were times marked by significant hormonal changes. In addition, my thyroid levels must be monitored regularly to make sure that the thyroid medication I take daily (because of hypothyroidism related to the removal of most of my thyroid more than twenty years ago) is the proper dosage. If my thyroid hormone levels are even slightly off, I can easily go into a phase of insomnia, anxiety, and panic attacks. Lowering the level of thyroid hormone even minimally can return me quickly to my typical relatively calm self.

Instead of viewing autism as a mental health issue and focusing too much on possible genetic causes or stereotypical behaviors, more doctors and therapists should recognize autism as a physical condition that can be treated. If, indeed, the child doesn’t feel well, it’s likely that he or she will not behave appropriately. If the person with autism has hormones that are unbalanced, anxiety is likely to erupt. Rather than just attributing all the behaviors to autism, perhaps we need to look deeper and find the true physical cause.

Yesterday, my dad and Ed were setting up a new television for my mom. Early in the process, they were derailed because the screws they needed to attach the television to the base that holds it could not be found anywhere. After looking through all the packaging, they were convinced that the screws were missing and they would need to return the television to the store and get another one or at least the missing pieces. My ability to find lost items and my tenacity in never giving up motivated me to go look for the missing screws myself. In less than a minute I was able to find them in a tiny plastic bag taped to a larger plastic bag, saving a trip to the store and allowing the installation process to continue. What was different about my search from theirs? They kept looking where the instructions told them the needed pieces were and somehow missed what I found. I think autism is like that. Scientists keep looking in the wrong places, and too many people give up too quickly when they can’t find what they’re seeking. Just like those missing pieces I found yesterday, I truly believe that one day the missing pieces to the autism mystery will be solved. In the meantime, I will keep searching for answers and sharing what I’ve learned, hoping to erase any stigma of autism and to create greater understanding for those whose lives have been touched by this condition.

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.” Matthew 7:7

Taking Charge/Letting Go

 

Several years ago, an assistant principal who has since retired from the school where I teach had a plaque on his office wall that read, “If it is to be, it is up to me.” He probably intended that message to the students who landed in his office for not following the rules as a lesson on responsibility. However, some of the staff also suspected that he intended that as a message for the teachers to handle our own students with discipline problems so that he wouldn’t have to deal with them himself. Nonetheless, the message resonated within me as I convinced myself that I was solely responsible for Alex getting better. I believed that if I worked and researched hard enough, I could find the best methods to help him overcome the struggles of autism. Four years ago when his anxiety and behavior began spiraling out of control, I was not only overwhelmed by the crisis our family was facing but also by the feelings of failure that somehow I was to blame for this.

What began with a detachment in which Alex began rarely speaking to us and lacked interest in doing anything except for lying on the couch or sleeping in his bed escalated to full-blown anxiety attacks in which he would angrily and falsely accuse us of misdeeds and physically attack us. Somewhere along the line, we had lost our sweet and docile boy and were living with a fully grown angry young man who was a stranger to us. Despite our best efforts to keep him engaged in activities and calm and happy, to not awaken the beast, Alex was dealing problems we couldn’t identify or solve for him.

During these excruciating months, I read and researched harder than I had ever done in my life, desperately trying to find the key to the place where Alex had locked himself inside. His family doctor had retired because she was very ill, and the doctor we were seeing was willing to try various medications but didn’t seem to have much experience with autism. We also took him to another doctor who was compassionate and holistic in his approach, but Alex seemed only marginally better with the treatments he recommended. Frantically, I kept looking for methods and supplements to ease anxiety and aggression in autism, yet none of the things we tried seemed to have much impact. In addition, I met with a therapist and a psychiatrist myself because Alex would not leave the house, and I tried to explain the desperate nature of our situation: we were losing our son to some sort of madness, and we had to get him back. While both of them were sympathetic, they didn’t have any real answers or anything new that we hadn’t already tried. Even though I had been willing to allow professionals to know the upsetting details of our private life, they were unable to help, which made me return to the plaque on the wall: “If it is to be, it is up to me.”

However, I was wrong. This battle was not mine to fight. Even though I had prayed throughout the struggles, I kept praying for God to show me the answers, for God to help me help Alex. Instead, if Alex was to get better, I needed to surrender to God’s will and to surrender Alex to others’ care. Admitting that I was not up to the task that I had devoted myself to for Alex’s entire life was harder than I imagined, but I had to do it for his sake. Clearly, he was not getting better at home, and nothing I did was helping him get better. Ed and I came to the hardest decision we would ever have to make; we knew that we would have to hospitalize Alex in a psychiatric ward. That hardest decision was ultimately the best decision we ever made.

During the weeks that Alex spent in the hospital, he finally received the treatment that he needed from knowledgeable and caring professionals, and he was put on medications that eased his anxiety and the subsequent aggression, so that he could enjoy life once again. Moreover, they explained to us that his behavior did have a reason. The Prozac that he had been taking for his OCD had suddenly stopped working, which meant that he was overwhelmed and unable to cope without an SSRI to help calm him. In addition, he was going through his final growth spurt, which brought hormonal changes, especially increased testosterone, that made him anxious and aggressive. Finally, we not only had answers to our questions, but we also had solutions to our problems. It was not up to me; it was up to God to lead us to the right people who could help Alex.

While Alex’s hospitalization was a heart-wrenching time, those weeks were necessary to help him get better, something that was not happening while he was at home with us prior to putting him in intensive treatment. Another unexpected blessing that came from this dark time was that his social worker during the inpatient stay provided invaluable assistance in getting legal paperwork in place (along with our kind-hearted lawyer neighbor who drew up documents on a Sunday afternoon and came to our home to go over them with us) to name Ed and me as Alex’s legal health care representatives so that we can make medical decisions regarding his care. His social worker also helped us navigate the complicated process of getting state support services for Alex by making countless phone calls to plead Alex’s case, making appointments with a doctor and a psychologist to assess Alex in the hospital for the state-required paperwork, and answering any questions we had about the process.

Although we had carefully followed all of the steps the state requires to get support services for a disabled adult, we knew that the waiting list to qualify was ridiculously long. Typically at that time, parents waited at least ten years for their children to qualify. Knowing this was in God’s hands and not mine, I prayed for patience. This was not up to me; it was up to a bureaucracy, and truthfully, I didn’t have a lot of faith in them. However, God moved mountains, and in less than three months after all of our stacks of paperwork were filed, we received a call that the state granted our request for an autism waiver, which meant that Alex could receive a variety of supports that he needed. Within a few weeks, we had a case manager to oversee his budget and services and a therapist to help us with his behavior. Moreover, he qualified for Medicaid retroactively six months, which meant that they helped cover hospitalization costs that our private insurance did not. The speed of this notoriously slow process is nothing short of miraculous; we cannot explain why things fell into place other than to give the glory to God.

This morning, I was reading Psalm 102 for the first time, something I should have been reading four years ago. This Psalm is described as “A prayer of one overwhelmed with trouble, pouring out problems before the LORD.” Remembering the desperation I felt during those dark times, I empathize with that Psalmist, who pleads, “Hear my prayer, LORD; let my cry for help come to you. Do not hide your face from me when I am in distress. Turn your ear to me; when I call, answer me quickly.” Four years later, I can proclaim that God did answer our prayers and provided even more than we asked. Not only did He provide the help Alex needed to get better, but He also returned our sweet son to us, and He made certain that we had a support team in place so that Alex could continue to make progress. What seemed to be a hopeless setback was, in fact, the appointed time for God to set in place His plans that were better than ours, to propel us forward faster than we imagined. Perhaps the true lesson should be, “If it to be, it is up to Thee.”

“You will arise and have compassion…the appointed time has come.” Psalm 102:13

Thoughtful Acts of Kindness

 

“In spite of everything, I still believe that people are really good at heart.” ––Anne Frank

For several years we hesitated to take Alex places because his behavior was unpredictable, and we feared that he might become overwhelmed in a public place. While our first concern was avoiding upsetting him, we also didn’t know how others might respond to his behavior, and we tried to avoid uncomfortable situations. Even as he has improved over time, we feel a need to protect him from people who may intentionally or unintentionally not take kindly to his impaired communication and social skills. However, as we have recently begun taking him out to public places more often, we have been gratified to see how kind people truly are to Alex.

On Friday evening, we took Alex to a Valparaiso University men’s basketball game, which was very crowded and loud. Despite all the people, noise, and activity, Alex thoroughly enjoyed himself. At one point, the cheerleaders tossed mini-basketballs with VU logos on them into the crowd, but we were unable to catch one for Alex. Later, a pretty college girl who had apparently been sitting closer to the court earlier in the game came up to sit with her friends in front of us. She smiled at Alex, held out the mini-basketball she had been able to catch, and asked, “Would you like to have this?” Delighted, Alex took the basketball from her hand, smiled at her, and thanked her.

What she didn’t know after she turned around was that Alex held that little basketball the entire game and kept smiling at her. The next day he was worried that he had lost that small gift, and he was relieved and happy that I remembered where he had put it for safekeeping. What she didn’t know was that not only did she make a young man with autism happy by giving him a small token, but she also endeared herself to his parents with her kindness to their son. That pretty young woman became even more beautiful in our eyes because of her kind heart and generous spirit.

Last evening, we took Alex to our favorite family restaurant, Round the Clock in the nearby town of Chesterton. The atmosphere is quite relaxing, and the food and service are always excellent. Moreover, we have been impressed with how warm and friendly the staff members are to Alex. One young lady, Kayla, has waited on us several times, and she also works as a hostess there on weekends. Whenever she sees Alex, she greets him warmly by name, asks him questions, and patiently waits for him to answer. Last night, as she greeted us and showed us to our table, she once again engaged Alex in friendly conversation, and when we left, she made a special point to say goodbye to him.

What Kayla doesn’t know is that Alex is always happy to see her, even when he doesn’t look up at her. She may not see his shudder of joy when she smiles and calls him by name, but his mother sees it all. She may think that she’s just doing her job to be friendly to customers, but we know that she makes the special effort to make Alex feel welcome because she patiently waits for him to acknowledge her, never rushing him, even when she is busy. Moreover, she treats Alex like an old friend, and for this his parents are thankful.

Later in the evening, we took Alex to the middle school where I teach for a Mardi Gras celebration, filled with carnival games, loud music, and hundreds of excited middle school kids. Like the basketball game the night before, Alex thoroughly enjoyed himself in the midst of all the chaos. As we entered the gym, my friend and colleague Debbie, who has always taken a special interest in Alex and shown him kindness, greeted Alex warmly, gave him Mardi Gras bead necklaces (which he promptly put around his neck without any prompting), and handed him three tokens,  explaining that he was to use them to vote for his favorite games. Before we entered the crowded, noisy atmosphere, Debbie’s reassuring demeanor prepared Alex for the activities ahead. Although she would likely dismiss her kindness toward Alex as no big deal and assure us that she was pleased he could be part of Mardi Gras, Alex was happy to see a friendly face in the crowd, and we were grateful that she made him feel comfortable.

As we walked around the gym, I looked for games that I thought Alex could play so that he could be part of the celebration. Seeing a game with big dice being run by one of my former students, I asked him if he would like to play that one. While I knew my former student was a nice young lady, she showed exceptional kindness to Alex as she patiently explained how the game worked. As he tossed plastic peppers into a sombrero, she earnestly cheered for him and encouraged him to stand closer, trying to help him win a prize. After the game was over, she sweetly told him, “Thanks for playing.” What she didn’t know was that he walked away with a grin on his face, pleased that he could participate in one of the games because she had helped him understand the rules. What she also didn’t know was that her former teacher will not only remember her always as an excellent student but also as a wonderful person who was kind to her son.

Spotting a game that was similar to his favorite game on The Price is Right, Plinko, I suggested that he try that one. In addition to the game itself being familiar to him, I was also reassured because the student running the game is one of my nicest students this year. She sweetly explained to Alex how the game worked and allowed him to have a second chance when the golf ball didn’t run down the Plinko board as it was supposed to do. When Alex’s ball landed on the winning spot, she cheered for him, even though it meant that he could throw a pie in her face. Knowing that Alex was not comfortable doing this, I explained to her that she didn’t have to do that, but she put the pie in her own face as a good sport. Smiling at Alex with whipped cream on her face, what she didn’t know was that he found the whole thing amusing. What she also didn’t know was that she has now found a special place in her English teacher’s heart because she took the time to help and understand Alex.

In an age where people often respond to expressions of thanks with “No big deal” or “No problem,” those who are kind to Alex should know that it is a big deal to us, and we see the extra effort, even if they assure us it was not a problem for them. Little things truly mean a lot to Alex, even if he can’t always express the gratitude he feels, often because he is overwhelmed by the kind acts. Moreover, as his parents, we always appreciate those who take them time to engage Alex, to speak to him in a way that is never condescending or patronizing, and to make him feel part of a community. In doing so, he has opportunities to practice his social skills, to enjoy interacting with others, and most of all, learning how to be kind to others because they have been kind to him. What may seem like a small act, indeed, has greater impact than people may ever know. However, we notice those who treat Alex with kindness, and we feel blessed.

“…And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8

Make a Joyful Noise

 

As I have mentioned in previous blog entries, Alex usually speaks quietly, often making understanding what he has to say difficult. In fact, one of the areas his therapists and we have worked with him to improve is making his volume audible so that he can be heard. As they have pointed out to us, in order to advocate for himself, Alex will have to speak up and make sure he is heard. Even though we are willing to ask him to repeat what he has said until we understand what he wants to tell us, other people may not be as patient with him. For this reason, we have worked with him on his volume and had him practice asking and answering questions he would need in social situations, such as ordering his food in a restaurant, something he does regularly on our Fun Friday recreational therapy outings.

I don’t know whether he speaks quietly because his hearing is so acute that his voice sounds louder to him than it does to other people, or perhaps he feels unsure about speaking aloud because he knows speech is one of his weaknesses. Of course, like any skill, he has needed to practice to improve, and we have been pleased with the progress we have seen. Recently, his music therapist commented that Alex rarely has to repeat something he has said because he is speaking with an appropriate volume most of the time now.

A couple of weeks ago, Alex came downstairs and enthusiastically told us how low gas prices were and specifically named the price at a local gas station. One of his interests is following oil prices every day and observing how they affect gasoline prices. He went on to tell us that this was the lowest price in many years and cited the specific year in the past when gasoline prices were that cheap. Because Alex was so excited about these low gas prices, Ed suggested that we go fill my car’s gas tank at the station Alex had found online, even though it was 9:30 at night. Alex was even more excited that we were actually going to the gas station, and he was delighted to be going along for what he perceived to be a grand adventure. Essentially, he was being rewarded for speaking up and sharing his knowledge with us.

Yesterday afternoon, I could hear men’s voices talking upstairs, and I realized that Alex and Ed were having a conversation. Even through the closed door of Alex’s room, I could hear their discussion about the upcoming Valparaiso University men’s basketball game that evening. In the past, I would have been able to hear Ed’s voice but not Alex’s, and it was nice to be able to hear him matching Ed’s normal conversational volume. As I briefly eavesdropped, I was happy to hear them talk about a shared interest, something we once wondered if Alex would ever be able to do.

In addition to speaking up more, Alex has also been singing in a louder voice lately. One of the many benefits of music therapy is that Alex has learned to sing along to songs he enjoys. When he first started music therapy, he would just listen to the songs or maybe play a percussion instrument or accompany on keyboard, playing all the wrong notes. With time, he gradually began singing along, but he would barely sing, so that he appeared to be lip syncing. Now, as we watch American Idol together every week or listen to music on the cable Music Choice channels or listen to the radio in the car, I often hear Alex’s voice, sweet but off key, like mine, singing along to the lyrics.  As I listen to him sing, I wonder if singing has helped his speech because he can recite words that are familiar while gaining practice with his articulation and volume. Nonetheless, we just like listening to him sing because it clearly brings him joy.

Last night at the university basketball game, Alex thoroughly enjoyed himself, even though our team lost. After going to several games this season, he knows the routines of when to stand, when to sit, when to clap, and when to cheer. When the first notes of the VU fight song play, he immediately stands with the rest of the crowd. When the cheerleaders run to the floor with signs, he eagerly anticipates the chant of “HEY, VU!” followed by, “V-A-L-P-A-R-A-I-S-O, LET’S GO, VALPO, LET'S GO!” In addition, he recognizes familiar songs the pep band plays, and he smiles and gently rocks when they play his favorite tunes.

One of his favorite songs they play is “Livin’ on a Prayer” by Bon Jovi, one of his favorite groups, whom he used to call “Bon Jo-bee” when he was younger. I found it interesting that the student section was singing the chorus to this song loudly, even though none of them were even born when this song was popular in the 1980’s. Sometimes Alex sings along with them; mostly he smiles as he listens. To encourage him to sing along, I sing the words in his ear, and I realize that these words have meaning for us, a promise we will get past the obstacles autism has presented our family:

“Whoa, we’re halfway there; whoa, livin’ on a prayer.

Take my hand; we’ll make it, I swear. Whoa, livin’ on a prayer.”

When Alex was younger, we prayed for the time when we would be able to have conversations with him, and we worked hard to get him to speak more, wanting to know what he would have to say. While he still struggles with speech, he can now give us some insights into his thoughts, sharing his enthusiasm about gasoline prices, basketball, or a familiar tune. I’m certain that with more time and more practice, he will have more to say. Indeed, we are “halfway there,” and for that, we are truly grateful. Alex, “take my hand; we’ll make it, I swear. Whoa, livin’ on a prayer.”

“Make a joyful noise unto the Lord, all the earth; make a loud noise, and rejoice, and sing praise.” Psalm 98:4

Keys to Success

 

Yesterday I read an interesting article that made me think about the most valuable skills we can teach children, whether they have autism or not. This article was linked on the Indiana Resource Center for Autism’s Facebook page and was published on their website, which has a wealth of resources and information regarding autism. [To read this article on their website, please click here.] Written by graduate student Anna Merrill, “Tools for Successful Transition: Self-Determination, Resilience, and Grit” identifies three key traits that will help adolescents, particularly those with autism, develop into successful adults. She notes that self-determination, resilience, and grit are important for positive outcomes, such as employment, independence, and a better life for adults.

The first of these traits, self-determination, focuses upon pursuing and obtaining goals, which are needed for a sense of well-being. Ms. Merrill lists several strategies to develop self-determination in adolescents, such as teaching goal-setting and problem-solving skills, encouraging decision making, and promoting self-awareness and self-advocacy. In addition, she provides practical suggestions, including participation in planning meetings, developing listening and effective communication skills, learning to deal with stress and frustration, and self-evaluation of interests, strengths, and weaknesses.

I found these strategies interesting because Alex’s support team––his case manager, behavioral therapist, music therapist, and respite staff, along with Ed and me––all use these approaches to help him make decisions and become more independent. This Wednesday, we will have a quarterly meeting with his team to discuss his progress and needs. As always, Alex is expected to be an active participant because he will need to answer questions, even though verbalizing his thoughts and feelings isn’t always easy for him. Nonetheless, we all know that his input is vital to developing his skills and planning for his future.

The second trait detailed in the article is resilience, the ability to cope despite adversity and the refusal to give up. To deal with challenges, Ms. Merrill notes three important elements crucial to resilience. Specifically, developing positive personal traits, such as optimism and self-esteem, is vital to resilience. In addition, family relationships, including a nurturing environment and a stable home life, help develop resiliency. Along with family support, community support, such as connections with extended family and involvement in community activities, also foster resilience. Essentially, a good attitude and the support of caring people help a person learn to deal with challenges effectively.

Despite the obstacles autism has presented, Alex has learned to be quite resilient. He maintains a positive attitude most of the time and rarely complains about how difficult some tasks are for him, due to his fine motor and communication limitations. In addition to our love and support, he now has a team who provides support, and because his behavior has improved, he has more opportunities to interact with extended family and to engage in community activities, such as music and sports, which he thoroughly enjoys.

The final quality needed for success, according to the article, is grit, which is related to resilience in that grit is the perseverance despite obstacles, the tenacity to pursue goals, no matter what. To develop grit, Ms. Merrill recommends encouraging a growth mindset that emphasizes the value of the process and not just focusing on the outcome. Grit requires persistence, a desire to learn, and valuing challenges, effort, and criticism.

The importance of grit makes sense to me because Alex is one of the most tenacious people I’ve ever known. (I’m pretty tenacious myself, so he may have inherited or imitated that quality from me!) I’m certain that one of the main reasons he has made so much progress over the years is that he never gives up and keeps on trying, despite the obstacles autism has created. For example, if he tries to tell us something, and we don’t understand what he’s saying, he will keep giving us clues until we figure out what he wants to communicate. To watch him eat is often a lesson in grit because his fine motor skills can make eating difficult. Nonetheless, he never gives up poking or scooping with his fork until he is able to get food in his mouth, which is the reward for his efforts.

After detailing the three qualities needed for success, this article also discusses what may hinder the development of self-determination, resilience, and grit. The author notes that parents may prevent their special needs children from developing these important traits with the best of intentions. Specifically, parents may want to protect their children or may not want them to fail, so their children do not develop these qualities necessary for success in life. She recommends that parents focus more on long-term goals than daily goals and push out of their comfort zones, which is in the best interest of their children so that they may successfully become independent adults.

With the best of intentions, I have been a full-fledged helicopter parent to Alex, I admit. Because he could not speak well, I have been too quick to speak for him. Because fine motor skills made basic tasks difficult for him, I have been his extra pair of hands. Because I feared for his safety, especially since he is naively trusting and doesn’t always sense danger, I have held onto him tightly. And for less noble reasons, sometimes because I was in a hurry, I did things for him because it was faster and easier than waiting for him to do it himself. Although I have enabled him in many ways, I know that he must learn to be independent because I won’t always be around to fix him a snack, or zip his jacket, or remind him to go to the bathroom before he leaves the house.

Because Alex has learned good coping skills and is less likely to become overwhelmed, we have been encouraging him to make his own decisions. At first this was difficult for him because he was used to us telling him what to do. After teaching him how to weigh his options, he is becoming quite adept at making reasonable choices, and he seems to feel proud that he can decide for himself. In addition, I am learning to walk away and let him do things for himself instead of watching him struggle and then taking over for him. For example, he may have to take a dozen attempts to hang up his jacket, but I can’t grab it out of his hands, or he’ll never learn to do it on his own. With more practice, he’s getting much better at hanging up his coat in fewer tries, but more importantly, he feels a sense of pride for doing this task by himself.

This sense of independence has carried over in other aspects, as well. Recently, Alex has begun consistently bringing his dishes and forks to the sink after he’s done eating without being reminded to do so. In addition, he has become more involved in planning his schedule, making sure that we know the dates and times of basketball games or television shows he doesn’t want to miss. Also, he has shown more autonomy in his health, letting us know when it’s time to take his pills and wanting to learn all the names of them, identifying them by color and shape. Rather than relying upon us for every aspect of his carefully planned schedule, Alex is becoming more self-reliant, and he likes being a more active participant. With these small steps, he works toward our ultimate goal––independence, and we know that God will be with Alex every step of the way.

“So we keep on praying for you, asking our God to enable you to live a life worthy of His call. May He give you the power to accomplish all the good things your faith prompts you to do.”  2 Thessalonians 1:11

Vitamin B12 Deficiency and Autism

 

As I have explained in previous blog posts, I find medical research related to autism fascinating and spend a great deal of time reading articles and books, hoping to find ways to help Alex. The Great Plains Laboratory, which has run various tests on Alex to determine metabolic issues, often points me in the right direction through their sharing of interesting medical articles on their Facebook page. This week they posted links to two articles that caught my attention because these research studies focused upon vitamin B12 deficiency, something that I believe is linked to symptoms Alex shows.

One of these articles, “B12 deficiency a concern for long-term care,” was published online this month on January 19, 2016, in Science Daily. [To read this article, please click here.] Reporting on a study done by the University of Waterloo, scientists discovered that people living in long-care homes in Ontario often tested as vitamin B12 deficient. Specifically, 14% had B12 deficiency at the time they were admitted to the facilities, and 38% showed only slightly better levels of B12. After a year, another 4% developed a B12 deficiency. However, those who took B12 supplements had better B12 levels. As this article notes, B12 deficiency can be prevented by taking supplements or eating foods such as meat, dairy, or fortified cereals.

However, as this article states, untreated B12 deficiency can lead to anemia and neurological issues, such as unsteady gait, and even paralysis. Moreover, low levels of B12 have been linked to osteoporosis, lethargy, and mental conditions, such as depression, dementia, and increased confusion. Perhaps physical and mental declines simply attributed to old age may have a nutritional cause––B12 deficiency. Consequently, the research team concluded that people living in long-term care facilities should have yearly blood tests to determine their B12 levels, especially since B12 deficiencies are quite treatable, which means serious consequences can be prevented.

In another article published online this month in Science Daily, studies show that people with autism and schizophrenia also have vitamin B12 deficiencies. This article entitled “Brain levels of vitamin B12 decrease with age and are prematurely low in people with autism and schizophrenia” summarizes research done by Dr. Richard Deth, professor of pharmacology at Nova Southeastern University. [To read this article, please click here.] After studying brain tissue from deceased donors who were otherwise healthy, his team found that children with autism under the age of ten had brain B12 levels three times lower than those of their typical peers. The levels of the children with autism were similar to healthy adults in their 50’s, which indicates that people with autism have a premature decrease in their levels of vitamin B12. Like the study in Ontario, they also discovered that B12 levels were lower in elderly people, which researchers attribute to normal aging.

This research also discovered that the brain levels of B12 were much different than those found in the blood, where B12 is typically tested. Dr. Deth also points out the significance of their findings, stating, “The large deficits of brain B12 from individuals with autism and schizophrenia could help explain why patients suffering from these disorders experience neurological and neuropsychiatric symptoms.” Consequently, he believes that further research needs to be done regarding treating these symptoms with antioxidants, such as glutathione, and methylcobalamin, a form of B12 that supports brain development.

These research studies on vitamin B12 hold special interest for me for various reasons. First, I began reading research about methylcobalamin injections being used for children with autism more than a dozen years ago. After the studies indicated no harmful effects and some positive results, I presented this information to Alex’s doctor, who agreed that trying this treatment was a good idea. After determining proper dosage levels, she prescribed twice a week subcutaneous injections of methylcobalamin, which we ordered from a compounding pharmacy. Her nurse trained me how to give the injections, and Alex was a trouper about the shots, never complaining when I gave them to him. After only a few weeks of these injections, Alex began to toilet independently for the first time in his life; he was nearly thirteen years old. This was an answer to years of prayers and wondering if he would ever be toilet trained. I truly believe that the B12 shots healed nerve damage so that he could finally feel the urge to go to the bathroom, and he has been able to stay clean and dry around the clock ever since then. Consequently, for us the healing from these B12 injections was miraculous. When his doctor retired, we were no longer able to continue this therapy, which subsequent doctors did not think was necessary any longer.

Prior to having his wisdom teeth removed under general anesthesia in November 2014, Alex had blood tests run to check his overall health. Although his psychiatric nurse practitioner also runs blood tests every six months to check his wellness, these were the first tests that indicated Alex is slightly anemic. His family practitioner at the time recommended that he take a low dose of iron supplement to see if this would help the anemia. When he was tested six months later, his levels had remained basically the same, so I asked her if we could try a few months of methylcobalamin injections, as we had done when he was younger. She agreed to a trial run of a few months of the shots; however, when we tested him again, we had to find another doctor because she left town for another job.

In December, we met with a new doctor and explained the interventions we had done with iron and the B12 shots to address the slight anemia. This doctor decided to stop both treatments, even though Alex’s levels had improved slightly, and to have Alex do some different testing in three months. One of the tests he is running is a B12 level, and we will be curious to see what those results show. Of course, if his blood levels are different from his brain, as Dr. Deth’s studies indicate, these tests may not be that useful. In the meantime, I have been giving Alex a B vitamin complex supplement, hoping to stave off any negative side effects from a potential B12 deficiency.

My main concern is that Alex has inherited pernicious anemia, an autoimmune condition in which the body lacks intrinsic factor, preventing the digestive system from properly absorbing vitamin B12. My father was diagnosed with pernicious anemia when he was in his 60’s, and his father and grandfather had pernicious anemia, as well. Although the condition is treatable with monthly B12 injections, my dad has lingering effects of the condition because it was not diagnosed soon enough. Namely, the vitamin B12 deficiency caused nerve damage in the form of peripheral neuropathy, or impaired sense of feeling in his hands and feet as well as impairing his sense of smell.

Armed with this new knowledge and research, I will be even more vigilant in pursuing the cause of Alex’s anemia with his new doctor because I do believe that B12 deficiency may be the cause. The good news is that this condition can easily be treated with supplements, but we want to prevent any further damage to his neurological system and potentially heal damage that may have already been done. As Alex’s mom/legal health care representative/advocate, I will keep praying for God’s healing and pursuing ways to make him better and healthier so that he can reach his full potential and enjoy life as a happy and healthy young man.

“O Lord my God, I cried to You for help, and You restored my health.” Psalm 30:2

Asked and Answered

 

This week some of my friends posted a list of questions on Facebook that parents could ask their kids to see what they think of them along with the candid answers that their kids gave. Curious to see how well Alex knows his dad and me, I decided to ask him some of these questions. Of course, his problems with pronouns made this a little more challenging, as I had to explain who was “I” and who was “you” by substituting our names. Once he figured out whom I meant, he came up with some pretty good answers. Moreover, I found it interesting that he seemed to take this questionnaire so seriously, answering some questions quickly and confidently, and giving others careful thought, with his chin in his hand as he earnestly pondered the best answers.

What is something I always say to you?  “Thank you” This is true. I thank people all the time, which is probably how I won the “Best Mannered Teacher” award from the local cotillion society twice. I also constantly remind Alex, “Tell [person’s name] thank you,” which may be another reason he chose this response.

What makes me happy? “Going to restaurants” Again, this is true. Anything that involves food and my not having to cook makes me happy. Also, knowing that Alex also likes going to restaurants makes me happy, too.

What makes me sad? “Arguing” What an insightful answer! I hate conflict of any kind and will do anything to avoid an argument. Alex also knows that he will get nowhere arguing with me because as he once noted, “She never changes her mind!”

How do I make you laugh?  After quite a bit of thought, he couldn’t think of any specific funny things that I do, but he did tell me that I am “90 percent funny.” I’ll take that A- in humor.

What is my favorite thing to do? “Watch NASCAR” Yes, the boy knows me well.

What do I do when you’re not around? “Watch TV” Again, the boy knows me well.

What am I really good at? Without hesitation, he answered, “Sudoku.” That would be one of the last things I would have thought of, but he’s impressed with my ability to solve those silly number puzzles he finds fascinating.

What am I not very good at? Again, without hesitation, he responded, “Math.” He knows my limitations well, especially since I frequently ask him to solve number problems for me (except for Sudoku, of course).

What is my favorite food? “Chicken” I’m not sure where he came up with that one, as I could take or leave chicken. Maybe he confused it with my real favorite, chocolate. Both begin with “ch,” after all.

What do you enjoy doing with me? “Visiting Nanny (my mom) and watching Jeopardy” The only thing better than watching Jeopardy with me is the three of us watching Jeopardy together because we are a force to be reckoned with when we put together our various trivia knowledge.

After going through these questions to see what he knew about me, I posed the same questions for him about his dad. This was actually easier because we didn’t have the pesky pronoun issues with “you” and “I.”

He told me that his dad always says “Good night” to him, which is true. This probably makes an impression on him because they always hug good night, too.

Alex said that going to basketball games makes his dad happy, which is also true. On the other hand, he had trouble explaining what makes his dad sad and could only tell me “Ouch.” I guess he meant getting hurt makes his dad sad. I think this was on his mind because Ed recently had minor surgery that required stitches, and Alex seemed concerned about how that was healing.

As with me, he had trouble verbalizing what his dad does that makes him laugh, but he did give him a solid “95 percent funny” rating. I’m not quite sure what Ed does that merits a better grade in humor than I get. I think it has something to do with their ganging up on me and teasing me, which Alex finds even funnier than Ed does.

For Ed’s favorite thing to do, Alex named watching basketball, which is accurate, and he said that Ed “watches movies” when he’s not around, which is also true.

When asked what his dad is really good at, Alex immediately said “math.” I guess this is good since he thinks this is my weakness. When asked about something his dad is not very good at, he thought for a long time and couldn’t come up with anything. Apparently, his dad has no weaknesses in Alex’s eyes.

Alex also named shrimp as Ed’s favorite food, and he said that the activity that he enjoys doing most with his dad is “going places,” and he specifically named going to basketball games, carrying along the basketball theme found in earlier questions.

I think it’s interesting that Alex identifies so strongly with his dad, sharing interests, strengths, and even favorite foods. They do have very similar personalities, so I suppose it’s really not surprising that they like many of the same things.

If Alex had asked me the same ten questions, this is what I would have said about him.

What is something I always say to you? “What would be good?’ “Wait and see.”

What makes me happy? going places, Epsom salt baths, food, music

What makes me sad? waiting, not being able to drive a car

How do I make you laugh? saying funny things, imitating Bob Dylan's and other people's voices

What is my favorite thing to do? going places, especially restaurants and basketball games, reading, listening to music, eating

What do I do when you’re not around? read, watch TV, do Google searches on the iPad

What am I really good at? math, reading, memorizing

What am I not very good at? tasks requiring fine motor skills (e.g. writing)

What is my favorite food? shrimp—the only food that rates 100 percent!

What do you enjoy doing with me? going places (restaurants, basketball games, concerts), watching TV (especially Jeopardy), visiting Nanny, saying bedtime prayers

After we had chatted about these questions and our answers, Alex wanted me to write down the questions for him. Then he galloped away (literally—this is what he does when he’s happy, all six foot of his lanky body) with the list in his hand to his bedroom, probably to review our conversation in his mind. As I did the same (without the galloping, of course), I thought about how fortunate we are that Alex, unlike many people with autism, can speak and express his ideas. Moreover, he has emerged from the isolation that autism can impose, which means he takes an interest in other people and notices the things they like to do. So, what makes me happy? Alex makes me happy, especially because he is probably the happiest person I know. To watch him enjoy life, whether it’s eating shrimp or watching Jeopardy or going to basketball games, is a blessing I never take for granted.

“…Ask and you will receive, and your joy will be complete.” John 16:24

Savant Syndrome

 

Knowing my fascination with autism research, my mom sent me a link to an online article from The Atlantic published yesterday that I found extremely interesting. In “The Mysterious Link Between Autism and Extraordinary Abilities,” writer Linda Marsa eloquently summarizes research regarding autism savants and potential causes for this phenomenon. [To read this article, please click here.] According to psychiatrist Darold Treffert, savant syndrome “refers to people who have a combination of significant cognitive difficulties, often stemming from autism, and profound skills––‘islands of genius.’” While savant syndrome was first described in medical literature as early as the late 1700’s, only recently has new research begun to find reasons for this rather rare condition.

A study in 1978 concluded that only ten percent of people with autism were also savants. However, new research indicates that one in three people with autism may also be classified as having savant syndrome, due to their exceptional abilities in certain areas. Typically, these savant skills include unique talents in art, music, and mathematics, along with extraordinary abilities to memorize. In addition, some people with autism demonstrate “splinter skills,” such as the ability to calculate complex math problems mentally without paper and pencil.

In the movie Rain Man, autistic savant Raymond Babbitt [who was loosely based upon Kim Peek, a man with autism who has savant skills] demonstrates the savant skill of calendar calculating, where he can name the day of the week when given any date. Another example of savant syndrome in autism may be found in the giftedness of Stephen Wiltshire, a man with autism who is called the “human camera” because he can draw intricate landscapes from memory [His amazing work can be found in You Tube videos.] after only seeing them once.

As this article points out, people with autism may be thought to have lower cognitive function, but perhaps the method of testing commonly used does not properly measure their actual abilities. Specifically, standardized intelligence testing includes verbal instructions, social interactions, and cultural references, all of which may be difficult for people with autism. Consequently, the perception of many people with autism as having “significant cognitive difficulties” may be incorrect. After all, standardized testing has limitations.

Although the cause of savant syndrome has not yet been definitively established, one theory is that injury to the left hemisphere of the brain before birth or during infancy triggers the right hemisphere to compensate for the loss, allowing unusual abilities to develop. Specifically, renowned autism researcher and psychologist, the late Dr. Bernard Rimland, also the father of a son with autism, noted that savant skills are typically found in the right hemisphere of the brain while communication skills, which are often weak in people with autism, are found in the left hemisphere.

This phenomenon of brain compensation has been found in people who have had strokes, neurodegenerative diseases, or traumatic brain injuries. For example, some people who have had brain injuries due to accidents have suddenly developed talents in art and music or newly found abilities to learn foreign languages. Similarly, people who are blind often develop their auditory skills to compensate for their loss of vision.

Perhaps the most compelling research on the connection between autism and savant syndrome has been done by Laurent Mottron, a psychiatrist at the University of Montreal. In brain imaging studies, his team noted that people with autism who had average IQ scores were 40% faster at solving complex logic problems than typical people. He believes that their analytic skills may explain their superiority at manipulating numbers. In addition, these studies showed that people with autism have enhanced perceptual abilities; specifically, they can mentally manipulate 3-D shapes, discern patterns, and spot details others might miss. He states, “People with autism are natural specialists––when they dig in, they quickly become expert.”

In 2012, further analysis of Dr. Mottron’s imaging studies noted that people with autism have enhanced activity in brain regions associated with visual skills, such as object recognition, visual processing and imagery, and the ability to distinguish between two similar objects. Consequently, “These results suggest that enhanced reliance on visual perception has a central role in autistic cognition,” states Dr. Mottron. Moreover, he believes that the enhanced perception found in people with autism helps them develop their logic skills, which makes them able to solve puzzles based upon logic.

Dr. Mottron’s research also indicates that this increased perception helps some people with autism acquire three abilities associated with savants: perfect pitch, synesthesia, which is a phenomenon where people associate hearing sounds with visualizing colors, and the precocious reading ability of young children known as hyperlexia. Dr. Mottron’s team explains the development of these savant skills as the “functional re-dedication of perceptual brain regions to higher-order cognitive functioning.” Hence, the brain areas dealing with perception develop so that that they can do tasks that involve higher-level thinking, such as performing music or reading.

Essentially, Dr. Mottron’s research indicates that people with autism have brains that are more flexible because they use different neural pathways to perform tasks. Mottron theorizes that the enhanced perceptive skills found in people with autism combined with knowledge and the development of expertise lead to savant skills. Essentially, the right hemisphere of the brain overcompensates for what may be lacking in the left hemisphere. Certainly, this research indicates that people with autism should never be underestimated in their abilities. Even though they may not perform well on standardized intelligence testing, their brains clearly function remarkably well.

This research on savant skills holds particular interest for me because Alex possesses savant skills in mathematics, and he was diagnosed with hyperlexia just after he turned four years old. As I have mentioned in previous blog entries, Alex has a phenomenal memory for anything number-related, such as dates, times, and statistics. He spent one summer learning the digits of pi and was able to recite nearly 1500 digits of this irrational number without making any errors. He tells us that he is able to visualize the digits in his head, which also makes him able to do mathematical calculations mentally. In addition, we know that he taught himself how to read at least by the age of three, and we suspect that he was reading as early as age two. However, because he had limited speech at that age, we weren’t certain that he was reading all the books he was perusing, including my college psychology textbooks that he liked to pull off the bookshelf and study for long periods of time.

In addition, Alex has a keen eye for small details that most people would overlook, noticing minor changes in signs, for example. For that reason, he is an excellent proofreader who easily catches mistakes in writing and possesses outstanding spelling ability, probably because he can also see the words in his mind. Although standardized testing has suggested that his intelligence is below average, we know how smart he is. Moreover, we know that God has given him a good mind that may not function like most, but He has also provided Alex with exceptional gifts, including perceptive abilities, excellent memory, and tenacity that will carry him far in life. We just need to give him time to develop his potential, and I have no doubt that he will.

“In His grace, God has give us different gifts for doing certain things well…” Romans 12:6

Making Choices

 

Last week we encountered a situation where at first we thought Alex was having a setback, but after some analysis, we realized that he was actually showing signs of progress. On Tuesday while working with his behavioral therapist, he became agitated, and we tried to get to the root of his anxiety by asking him questions. This seemed to aggravate him more, as he became increasingly obsessive about what he was going to do on Thursday evening. Probably trying to escape the probing questions of two concerned females, he kept leaving the room and had to be coaxed back so that we could figure out his problem to help ease his clearly troubled mind. All the various calming techniques we’ve taught him didn’t seem to be working, and he was frustrated.

Finally, I resorted to my English teacher mode and helped Alex break down the internal conflicts that seemed to be troubling him. While he was looking forward to Thursday evening, he realized that he had two choices that really appealed to him: watching the new season of American Idol on television or going to a Valparaiso University women’s basketball game. Even though he was eagerly anticipating both events, that created conflict for him because he could not do both at the same time. He had to make a decision between two equally appealing options.

Of course, I thought I had the ideal solution: we could tape American Idol while we were at the basketball game, and he could watch the recorded show later. However, my suggestion didn’t seem to solve the dilemma because he then became upset about when he would be able to watch the taped show. It would be too late to watch it Thursday evening after the game, and he didn’t want to wait until Friday. He found himself in one of those situations where he was simply going to have to make a decision, and he didn’t like it.

While I was concerned that his increased anxiety and OCD over a fairly simple problem indicated a setback, I realized that we had put him in a new situation. For many years, we rarely took Alex places because he became overwhelmed and didn’t behave appropriately. In the past few years, he has learned to deal with sensory overload and has developed appropriate coping and social skills so that he can go to restaurants and concerts and sporting events. Being able to go to a college basketball game has become an option for him in the past year, something that wasn’t on the table before.

In addition, we rarely asked Alex to make decisions. Ed and I made choices for him in his best interests, and he went along with our judgments, trusting us. We chose for him because he was too immature to weigh his options and because he never really seemed to have opinions on some things. When we did offer options, he would earnestly ask, “Which would be good?” If we told him both choices were good, he would sometimes become agitated and demand to know what the better choice was. To avoid a meltdown, we just avoided the choices issue by telling him what we were going to do.

As Alex has matured and made progress in his ability to cope with a variety of situations, we have encouraged him to think for himself, which has meant that he has had to consider the pros and cons and to make decisions. For example, we give him two choices of restaurants on Saturday evenings, and he usually can easily decide the one where he wants to eat. Occasionally, he will revert to his, “Which one would be good?” question, and we then guide him to ask one of us which restaurant we would like, teaching him the courtesy of allowing another person to get his or her choice.

Throughout his life, Ed and I have structured Alex’s days so that he has the routine he craves, and now we know that we must allow him the freedom to make his own decisions. This newly found freedom was the source of his anxiety on Tuesday. However, with the guidance of his behavioral therapist and me, he was finally able to calm down, weigh his options, and make a decision. He wanted to forgo the basketball game, stay home, and watch American Idol. After all, as he reminded us, there was another basketball game scheduled for Saturday afternoon, and we could go to that one.

As I watched American Idol with him on Thursday evening, he clearly had made the right decision because he was enthralled watching the contestants sing and even singing along to familiar songs. His choice was further confirmed after we found out that our basketball team had lost Thursday night. Moreover, he thoroughly enjoyed yesterday’s basketball game, which our team won handily. In fact, he probably enjoyed the game even more since it was the only one he attended this week, making it more special for him.

Yesterday afternoon, he came to me with another decision to make as he discovered that next month the last V.U. men’s basketball home game is scheduled at the same time as the Daytona 500 race that kicks off the NASCAR season. This time, I reigned in my micromanaging mother tendencies and allowed him to weigh his options without insisting that he tape one sports event or the other. I simply told him that I would be staying home to watch the race and that his dad would be going to the basketball game; he could do whatever he wanted. After thinking for a few minutes, he calmly decided that he wanted to watch the NASCAR race. Even though he seemed content with the decision he had made on his own, I reminded him if he changed his mind in the meantime, that would be fine. However, I’m betting that he sticks with his decision.

As parents, we want our children to be independent and make their own decisions. However, we may forget how hard it can be for our children to make those choices at first because we have always either told them what to do or guided them when they did need to choose. Because it has taken longer for Alex to begin his independence, we are just now seeing the struggle of breaking away from us so that he can enjoy the freedom of being a young man while also accepting the responsibilities of the choices he makes on his own. Although his choices this week between a television show and a basketball game were not terribly important, they gave him practice for more pressing decisions in life. Now we just have to step back and let him begin to take control so that he can become all that he is capable of becoming, and we know that God will guide him along the way.

“You will succeed in whatever you choose to do, and light will shine on the road ahead of you.” Job 22:28