Sunday, February 26, 2017

In Thy Light

On Monday, Alex had a dentist appointment to fill a small cavity between his two front teeth and to replace a small old filling in a back tooth. Even though the dentist had assured us that there was no hurry to fix these teeth, we didn’t want to wait and risk having the problem teeth get any worse. Besides, after two very successful times of having our family dentist fill cavities for Alex, we felt fairly confident that he would handle the situation well, and we knew that the dentist and his staff would handle Alex very well.

When the dental assistant summoned us back to the room, I realized that she had not worked on Alex before. Invoking my usual introduction to explain and reassure, I told her, “This is Alex. He has autism, but he’s usually very cooperative. We’ll be glad to help in any way we can.” With that I said a prayer that the procedure would go smoothly and hoped that he would live up to the build-up I had given him.

Thankfully, Alex came through the numbing, drilling, and filling like a trouper. Not only did he cooperate, but he also showed good social skills by answering their questions and using his manners. Moreover, he was totally relaxed, all six feet of him stretching the entire length of the dentist’s chair. Because they have always treated him with gentle kindness, he trusted them and had no fears. As our dentist patted Alex on the shoulder and told him what a good job he had done, we couldn’t help but feel pride in our son. When we thanked the dental assistant, she enthusiastically praised Alex, and he rewarded her with a big smile, showing the beautiful work she had done on his front teeth.

Although I’m probably biased as Alex’s mom, when he smiles, a light radiates from him that brings forth joy. However, I must not be the only one who sees that in him because other people have commented on what a great smile he has: his support team, people who wait on him in restaurants, family, friends, and others who have been treated to a smile from Alex. Alex’s smile is so infectious, when he grins broadly and shows his dimple, his behavioral therapist often giggles, delighted to share in his happiness. Seeing Alex smile is a treat, and we can’t help but smile with him.

Yesterday, we took Alex to the last home game of the season for the Valparaiso University women’s basketball team. Even though the team has won just nine games and lost twenty, sometimes losing by double-digit figures, Alex has remained a steadfast fan, only missing one home game. In fact, he plans his entire week looking forward to going to the games, repeatedly checking the basketball schedule and the calendar to make sure nothing will interfere with cheering on his team.

Unlike the men’s basketball games, which he also enjoys attending, the women’s games are subdued with few fans in attendance and a nearly empty student section. At times, the gym is remarkably quiet, more like a library than an athletic facility. Nonetheless, Alex settles into his seat on the bleachers, armed with two orange Gatorades and a small bag of Fritos, ready to follow two hours of basketball. No matter what the score is, Alex smiles through it all, just happy to be in a place that brings him joy. The team may be defeated, but Alex never is, ever hopeful that they will win the next game. Win or lose, he proclaims every game that he liked it “one hundred percent.”

In the last home game, Alex’s beloved Crusaders basketball team enjoyed victory in a game that was never close, winning 72 to 63. Although the players probably never noticed a young man sitting with his parents in the bleachers behind the team bench and always wearing a Valparaiso University sweatshirt, he has been their biggest fan who believed that they could win. As they scored each point, his face lit up with joy, revealed by his big smile and twinkling eyes. After a rather dismal home season, the team rewarded that ever-hopeful fan with a resounding victory, and he was delighted, standing and reading the words to the Valparaiso University fight song as the pep band played at the end of the game.

The motto of Valparaiso University focuses upon light, symbolized by a torch present in the school logo. The motto, “In luce tua videmus lucem,” or “In Thy light we see light” reflects the religious foundation of the university, focusing on the light of God that enlightens us. As the son of a Valparaiso University graduate and a Valparaiso University professor, Alex has grown up seeing that phrase in various places he has visited on campus over the years. Yet, I would venture that few people sense “Thy light” as keenly as Alex does in his abundant faith. Moreover, Alex seems to reflect that light, finding joy in unexpected places, even the dentist’s chair and the bleachers at a basketball game. How blessed we are that God shines his light through Alex, reminding us of His presence in our everyday lives and His promises for eternal life!

“Light shines on the godly, and joy on those whose hearts are right.” Psalm 97:11

Sunday, February 19, 2017

Big Brains

A few days ago, Scientific American published an article online regarding research linking large brains to autism. [To read this article, please click here.] Written by Karen Weintraub, the article entitled, “Autism Starts Months before Symptoms Appear, Study Shows” summarizes a study published last week in Nature. Led by psychologist Heather Hazlett at the University of North Carolina’s Carolina Institute for Developmental Disabilities, this research started about ten years ago after earlier research indicated brains of children with autism were unusually large by age two.

For this research, three MRI brain scans were done on 150 children, 100 of whom had older siblings with autism, putting them statistically more at risk for autism. These scans were done on children at the ages of six months, one year, and two years old. The data revealed that eight out of ten children who showed faster growth on the surface areas of their brains would later be diagnosed with autism.

Consequently, before children are typically diagnosed with autism, evidence of autism appears in the brain. This research indicates that brain enlargement seems to appear with the beginning of autism symptoms that are usually first noticed around eighteen months to two years of age. Although more research is necessary, MRI brain scans could potentially be an option for autism screening in high-risk children, such as those with siblings with autism, so that intervention could be started earlier.

Psychologist James McPartland of Yale University’s Child Study Center (who was not part of this research) recommends new possible treatments for infants diagnosed with autism. Described as “hyper-parenting,” this intervention involves more interaction between the child and parent with the parent cooing, laughing, and singing. He suggests: “Supersaturate a child’s environment with social information as much as you can and hope that it takes.”

More than twenty years ago, Alex’s pediatrician noted what a big head Alex had. Even though he was very typical for his age in his height and weight, he had a head circumference in the 90th percentile. His doctor half jokingly commented that the large head circumference just meant that he had a bigger brain. I doubt that he knew how true his assessment was, based upon the results of this new study. Although I tried to convince the pediatrician for over a year that something was wrong with Alex, he essentially dismissed me as a nervous first-time mom and assured me that Alex was fine. When he specifically asked me what I thought was the problem, I candidly admitted I thought Alex had autism. He asserted that I was wrong because Alex was “too smart to be autistic.” However, shortly after Alex turned four, he was diagnosed with autism after I finally insisted that he be evaluated.

Would an earlier diagnosis have made a difference? I doubt it. In the early 1990’s autism was less common than it is today, and finding qualified therapists was nearly impossible. Now that autism is more common, therapists are easier to find. However, the increase in autism rates means that many children must be on long waiting lists before they can begin therapy to help them develop needed skills. Moreover, we unknowingly practiced the “hyper-parenting” therapy Dr. McPartland describes, constantly engaging Alex with conversation, music, interactive baby games (such as "Peek-a-boo" and “This Little Piggy”), and reading aloud to him long before we ever suspected he had autism.

Perhaps more research needs to pursue the cause of the increased size of brains in infants with autism. What happens between birth and two years of age that might cause these brains to be enlarged? According to his official vaccination records, Alex received twelve shots by the time he was fifteen months old. [The current CDC recommended immunization schedule now calls for infants to have 25 shots by the time they are fifteen months old, not including annual flu shots.] At the top of Alex's medical form is the notation, “Newborn screening normal.” Could something in the vaccines have triggered the abnormal brain growth seen in autism? I believe so.

Certainly, his pediatrician was correct about Alex being smart; he’s the kid who can mentally calculate math problems with remarkable speed and accuracy, who taught himself to read by the age of three, and who possesses an amazing memory for details, dates, and figures. However, that large brain also means his language, fine motor, and social skills have been impaired, and he has had to learn to cope with sensory overload and anxiety.

While identifying brain characteristics commonly found in autism may prove useful to earlier diagnosis, research still needs to focus on what is causing these brain anomalies. Until we can clearly identify the causes of autism can we ever hope to find a cure for our children whose brains have been impaired. In the meantime, we celebrate every milestone Alex reaches, thankful for the progress he has made and for the healing God has provided while we wait.

“But now, Lord, what do I look for? My hope is in You.” Psalm 39:7

Sunday, February 12, 2017

Gut Instincts

Recently, Massachusetts General Hospital published a news release sharing new research that autism parents have suspected for many years. The article entitled, “Study finds alterations in both blood-brain barrier and intestinal permeability in individuals with autism,” details the research of Dr. Alessio Fasano and Dr. Maria Rosario Florentino. [To read this article, please click here.] According to Dr. Florentino, “As far as we know, this is the first study to look at the molecular signature of the blood-brain barrier dysfunction in ASD [autism spectrum disorders] and schizophrenia in samples from human patients.” Their studies found alterations of genes in autism tissue samples, suggesting that intestinal issues lead to inflammation of the nervous system, which contributes to autism.

One of the factors behind this research study was the significant number of gastrointestinal issues found in people with autism. Dr. Fasano notes, “As well as information on the blood-brain barrier, we were looking for more information on how increased permeability, otherwise known as ‘leaky gut,” might affect the development of ASD in the context of a dysfunctional gut-brain axis.” The blood-brain barrier, a semi-permeable membrane is designed to protect the brain from harmful substances. The intestines also help protect the brain by not allowing toxins in the bloodstream. However, with leaky gut syndrome, the intestines do not work properly and can leak harmful substances into the bloodstream that could harm the nervous system.

Dr. Florentino plans to research next how microorganisms in the gut contribute to leaky gut and behavior, hoping to improve issues with behavior in autism as well as gastrointestinal problems. Considering how prevalent leaky gut syndrome, food sensitivities, yeast overgrowth, and digestive problems are in people with autism, this research will undoubtedly prove helpful.

While mainstream medicine will view the research by these two doctors as groundbreaking, this information supports what parents and truly innovative doctors treating autism have known for years. In his 1998 book, Biological Treatments for Autism and PDD, Dr. William Shaw clearly addresses the gastrointestinal problems people with autism face, implicates the underlying causes for these issues, and explains how to treat these conditions with dietary changes, digestive enzymes, probiotics, antifungals, and nutritional supplements. Indeed, many children with autism have made improvements following the guidelines of Dr. Shaw and his innovative contemporaries who recognize the connection between the gut and the brain. My own copy of Dr. Shaw’s book is dog-eared, highlighted, and marked with many marginal notes. For me, his truly “comprehensive and easy-to-read guide” has been crucial to helping Alex deal with the various gut issues that have affected his health and behavior.

With Alex, three pursuits were necessary to address his digestive issues. First, once we discovered through blood tests that he had a sensitivity to the proteins in milk and grains, we put him on a casein-free and gluten-free diet, which he has followed faithfully since he was seven years old. Glutens and caseins can inflame his digestive system, causing irritation. Paired with leaky gut syndrome, these substances can escape the digestive system and wreak havoc on the nervous system.
Secondly, we tested him for heavy metal toxins, and these tests revealed that he had high levels of arsenic, lead, mercury, and aluminum. Under the direction of a holistic osteopath, he underwent oral chelation therapy with the sulfur-based prescription, DMSA, which bonded with the heavy metals to remove them from his body. In addition, we tested him for nutritional deficiencies and discovered that he needed to take supplements of vitamins B, C, and D to support his immune system.

Finally, the greatest battle was killing the yeast beast, candida overgrowth that stubbornly clung to his mouth and the rest of his digestive tract, making him irritable and even aggressive. While this treatment took years and a variety of antifungals, such as the medications Diflucan, Nystatin, Ketaconazole, and Itraconazole, along with the supplements caprylic acid, oregano, garlic, and undecenoic acid, we knew that we had to overcome this gastrointestinal problem for Alex to get better. Paired with probiotics to boost the good bacteria, this rotation of antifungals, along with an improved immune system aided by nutritional supplements, has helped Alex tremendously. Thankfully, we have not seen any evidence of yeast overgrowth in nearly a year, and we are hopeful that his gut is finally healed.

Although the research by Drs. Fasano and Florentino may not be news to autism parents who have followed guidance of cutting-edge doctors like Dr. Shaw, the mainstream medical community’s recognition of the connection between the gut and the brain may indeed bring hope and healing to those dealing with autism. Not only are we getting closer to finding causes for issues in autism, but we also hope and pray that we are getting closer to a cure.

“Thank you for making me so wonderfully complex! Your workmanship is marvelous––how well I know it.” Psalm 139:14

Saturday, February 4, 2017

Anxiety Aid

Despite medication and years of behavioral therapy, anxiety arises at times. Even though Alex has learned to cope with panic attacks much better, he still has moments when the world suddenly overwhelms him. Yesterday, we had just arrived at one of his favorite restaurants, and he began to panic that he couldn’t remember something from several years ago. Sitting next to him in the booth, I could feel him vibrating in his seat as adrenaline made him shaky, his eyes widened, and he desperately tried to communicate his fears. As Ed and I tried to reassure him and help him remember calming skills, he was trying to get ahold of himself because he really wanted to stay. For the first time ever, I noticed that his neck and face were splotched with red spots, which must have been a physical reaction because they disappeared a few minutes later when we convinced him that going home would be the best option under the circumstances.

Once we arrived home, he was calmer, but he was still a bit worried about his schedule, especially since plans had changed suddenly when we left the restaurant where we had planned to eat. Time schedules have proven very helpful to Alex over the years, allowing him to avoid being taken by surprise because he knows what is coming next. After I wrote a schedule outlining the rest of the evening, he settled down. A little later, he happily informed us that he was able to remember something he thought he had forgotten. Safe at home with a schedule, he was able to overcome the anxiety that panicked him and interfered with his usually unusually acute memory.

Over the years, we have made lists and schedules for Alex in a variety of ways: memo pads, legal pads, composition notebooks, and notes on his iPad. Problems have arisen at times, however, when he misplaced his precious lists intended to calm him and melted down because he couldn’t find the list he needed. To make his lists easier to find, I often use colored index cards. Last weekend, as Alex was carrying around a green index card with the schedule for the day, Ed reminded him to hold onto it tightly as we walked to a basketball game on a windy day. As the old saying goes, “Necessity is the mother of invention.” This time the father was the resourceful one, as Ed came up with a great idea.

Thinking of the wristbands baseball catchers and football quarterbacks wear to hold information regarding plays, Ed suggested that Alex could use one to hold his lists. Not only would we not have to worry about Alex losing his lists or having them blow away in the wind, but he would also be comforted to know that his beloved list was literally close at hand. The only problem was that I had no idea what those wristbands are called. A Google search informed me that they are known as wrist coaches. A little more online searching led me to discover that our local Dick’s Sporting Goods store had a variety of styles in stock.

A trip to the sports store was successful as I found one for $9.99: a Cutters mini wrist coach made of soft terry cloth material with the plastic holder on top that keeps the lists secure and dry. We also knew that we could convince Alex that the wrist coach was a great idea because he has seen catchers wear them on television. Yesterday, when he was dealing with his panic attack, I made him a schedule, slipped it into his wrist coach, and put the wrist coach on his arm. Needless to say, it worked like a charm. He kept turning his wrist to see the schedule, reassured that he knew where it was and what the rest of his day would entail. I just wish Ed had thought of this great idea sooner because it would have saved us countless times of frantic searches over the years for a list Alex misplaced.

While we wish Alex didn’t have to struggle with anxiety, we are pleased that he can cope better now, thanks to proper anti-anxiety medication and skills he has learned in therapy. However, we also know that he relies upon us whenever he finds himself overwhelmed, and we are thankful that we, too, have learned tricks and tips to help ease his fears.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17