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

Sunday, January 29, 2017

Thinking Caps and Name Tags

Every year, I ponder and search for what I think is the perfect Christmas gift for Alex. This year was no exception. Shortly before Christmas, a friend of mine told me that the website for Jeopardy, one of Alex’s favorite game shows, was now selling merchandise with the Jeopardy logo. First, I found a t-shirt emblazoned with “I’ll take fast cars for $200,” which seemed appropriate because it combines Alex’s love of Jeopardy and NASCAR. After ordering that, I found a baseball cap embroidered with the Jeopardy logo that I knew he would love; baseball cap plus Jeopardy plus his favorite color, red, had to be the perfect gift. However, when he opened it on Christmas morning, he wasn’t as enthralled as I thought he would be. Nonetheless, he seemed pleased with his Christmas gifts and was gracious enough to thank us for them.

Knowing that Alex sometimes gets overwhelmed by too many new things, such as all the gifts at Christmas, I didn’t give too much thought to his reaction or lack thereof to the Jeopardy hat. If I thought he didn’t like it, I was wrong. The next week, he came strolling into the family room precisely––as he does every weekday afternoon––at 3:28, ready for Jeopardy to start at 3:30, proudly wearing his Jeopardy hat. In fact, he wore it for the entire show and took it off immediately when the show was over. The next day, he repeated the routine, wearing his Jeopardy hat only for the show. Apparently, he thinks that he can only wear it when the show is airing, and he has continued this ritual since then. I tell him that it’s his thinking cap, and he does seem to be quicker about answering questions when he wears the Jeopardy cap. Maybe like Frosty the Snowman’s top hat, there’s some magic in there.

Another Christmas gift we gave Alex was a Burger King gift card. He likes the idea of being able to pay for his own food, and he manages better with a gift card than trying to handle cash. Nearly every Friday afternoon, his behavioral therapist and I take him to our nearby Burger King for recreational therapy so that he learns how to interact appropriately with other people: waiting in line, ordering his food, using please and thank you, and clearing his tray when he leaves. Apparently, he has endeared himself to some of the staff there who are on a first-name basis with him; he returns their kindness by naming them in his nightly prayers. Two of his favorites even gave him a Chicago Cubs World Series ornament personalized with his name for Christmas, which delighted him, and I think his obvious joy delighted them, too.

Recently, Ed had a reception at work and would not be coming home for dinner, so Alex and I decided to go out for dinner. Knowing that Alex feels comfortable at Burger King, I thought that would be a good choice. As we waited to order our food, I noticed that the young man taking orders was heavily tattooed and had assorted piercings. Wondering whether Alex would notice the worker’s appearance and hoping that he would not feel the need to make any comments, I was ready to intervene. If necessary, I would subtly and quietly remind Alex not to stare or say rude things. When we walked up to give our order, I tried not to stare myself and hoped Alex would use the social skills his behavioral therapist and Ed and I have taught him.

While getting ready to give our order, I saw that Alex was looking at the young man and smiling a bemused smile. When the worker greeted us, Alex started to speak, and I was a little worried because I had no idea what he would say. Suddenly, “Hi, Joey!” came from his mouth. Startled but relieved, I realized that Alex had not been looking at the young man’s tattoos or piercings, but instead was checking out his name tag so that he could say hello. Unlike me, Alex was able to overlook this young man’s appearance and seek a way to interact with him positively, greeting him by name, just as the friendly Burger King employees have done with him. He knows that it makes him feel good for people to call him by name, and he returned the favor. Interestingly enough, Alex has also added Joey to his nightly bedtime prayer list. How proud I am to have raised a son with a heart so pure that he looks beyond appearances and sees the real person behind them! Now, that is a perfect gift that he gives to me.

“Give, and you will receive. Your gift will return to you in full––pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back.” Luke 6:38

Sunday, January 22, 2017

No News Is Good News

After writing this blog for six and a half years, I took four weeks off from writing. With Christmas and New Year’s Day falling on Sundays, I figured a holiday vacation from blogging would be understandable. Then I gave myself two more weeks of break and considered that perhaps the blog was finished for good. My last entry about Alex’s birthday and how well he was doing would have been a nice “And they lived happily ever after” ending to a project I started long ago. However, with encouragement from my mom and my husband (both of whom I suspect secretly enjoy searching for typos to correct for me), I realized that I needed to refocus on the reasons I write about Alex.

My intention regarding writing about our family is to show others how autism impacts our family life on a daily basis––good and bad. For families like us who are raising children (and for us now, an adult child) with autism, I wanted to give them hope. Through all the ups and downs, we have come through this with our faith and love stronger and a young man who makes us proud every day. Moreover, I originally began writing the blog for Alex. In my first entry, I explained that I knew how important writing Alex’s history was if for no one else but him so that he could see how far he has come. With a renewed sense of purpose, I pick up my laptop again after a month to record Alex’s life experiences. As a confirmation that I should continue, on Friday I was surprised, pleased, and honored to have name One Autism Mom’s Notes as one of the “Top 50 Autism Blogs and Websites for Autistics and Autism Parents.” If I had any lingering doubts about whether to proceed, God put them to rest with that.

Without a doubt, 2016 was a wonderful year for us. Alex made great progress in his social skills that allowed us to enjoy family outings to concerts, sporting events, parks, and restaurants. We even savored simple everyday events, such as going grocery shopping or watching television together. His therapists have been delighted with how well he has learned language and coping skills to deal with anxiety, being able to verbalize when he’s worried. Even better, he can decide to conquer his fears and declare that he’s “not going to get upset” or that he’s “done being mad.” This is a huge step because he recognizes that he can take control of his emotions. In addition, we are thankful that his doctor gave him a clean bill of health along with the title of  “easiest patient of the day” in December. After struggling with yeast overgrowth in his digestive system that made him irritable and agitated for years, Alex seems to have that behind him. Although I knew that God would eventually heal him of the yeast overgrowth, realizing that we hadn’t dealt with thrush for several months was a pleasant surprise and blessing.

Most of all, we discovered that the professionals who truly knew about autism were correct in telling us that young men with autism struggle until they reach their mid-twenties, and then they improve significantly. We had been holding onto that promise with hope, and the closer that Alex got to age twenty-five, the more we realized it to be true. With his health greatly improved and his anxiety under good control, Alex can reach his full potential without being burdened by illness and fear. I have no doubt that God has great plans for my son, and I eagerly anticipate what the future holds.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it?” Isaiah 43:19

Sunday, December 18, 2016

Good and Perfect Gifts

This week I read an interesting essay written by another mother of an adult son with autism. [To read this essay, please click here.] Entitled “Prayer Power,” Kathy Bolduc’s blog entry describes the importance of constantly praying for our children, even when our prayers appear to go unanswered. She writes, “I don’t know about you, but I pray and pray for my son, Joel, who has autism. Many times I do not see specific answers to those prayers.” She goes on to describe the struggles of trying to find ways to make her son more independent through day programs and jobs, praying that he can live a “happy and fulfilled life.” While she admits, “I realize that my prayers will not always be answered in the way that I think they should be. God knows the bigger picture,” she believes Satan is often to blame. She states, “And I also realize that Satan has more than a toe-hold in this world…He will try to block my prayers whenever possible.” While I completely agree about the need to pray for our children constantly, I don’t give Satan the credit she does. Moreover, the longer I live, the more I don’t believe that prayers go unanswered.

Five years ago when Alex was so consumed with anxiety that he could not cope with the smallest of changes, we prayed for ways to help make him better. When every day was a struggle to keep him safe because his adrenaline rushes made him aggressive and out of control, throwing and breaking objects, as well as attacking us verbally and physically, we prayed for peace in our home. When we could not find any professionals who seemed to know what was causing our sweet and docile son to turn into an angry young man, we prayed for God to show us the way. We didn’t get answers right away, but we held onto our faith and kept praying anyway because we didn’t know what else to do.

Things had to get so bad and so out of control that we were willing to turn over our son to the only place where he could receive the care he desperately needed: a locked psychiatric ward of a hospital forty minutes away from home. After we had exhausted all of the local resources and had not found answers, we were exhausted physically and emotionally, and we knew this was the only way to save our son. God led us down this path, and even though it was heartbreaking, this hospitalization was the first step in Alex’s healing. There, we found professionals who understood that hormonal surges of the late teens and early twenties had ramped up Alex’s anxiety to where he could not function. Moreover, the Prozac he had been taking for nearly ten years to help his OCD was no longer effective, making his anxiety even worse. After several weeks of trying various medications, they were able to come up with a combination that kept his anxiety under control so that his behavior was under control. Moreover, they helped us navigate the state bureaucracy to get Alex the support services he needed in record time. God knew what we needed and how to get there; He answered our prayers in unexpected ways.

Through the teachings of Pastor Joel Osteen and my experiences in life, I have learned that God answers prayers in a variety of ways. While we would like for Him to say “Yes” immediately, that is not always in our best interests. Sometimes He says “No,” knowing that His ways are better than ours, closing doors that we keep trying to open. In our life with autism, I have learned that God often makes me wait before answering prayers, developing my patience and my faith and my trust in Him. Sometimes, waiting is necessary to prepare us for the next step; God knows better than I do about when I’m really ready to handle something new. Furthermore, I don’t give Satan credence, as Kathy Bolduc does, in my prayer conversations with God. I firmly believe that God hears my prayers and makes the decisions as to how to answer them—yes/no/not yet––without any interference from anyone. Even through the darkest days, God was beside us, guiding us with His knowledge, grace, and love toward the light we now see clearly.

On Friday, Alex turned twenty-five. In the past, I have felt a little wistful on his birthdays, wishing that he were further along in his development of language and social skills and concerned about his lack of independence. This year, I felt none of that disappointment. In fact, I told his therapist the other day that twenty-four had been my favorite age of his because he has been such a joy this past year. Since he has overcome so many issues, learned to manage his anxiety successfully and been able to enjoy a variety of activities, he has lived a more typical life. Most importantly, he is happy and healthy. Before going through the fire with Alex, I might have bowed to superstition and crossed my fingers and knocked on wood that this peaceful, contented life would continue. However, I have faith that God is only going to make things better. Certainly, we still have obstacles and potential setbacks ahead, but I know that God has great plans for Alex, even though I don’t know exactly what they are.

As I was putting Alex to bed the night of his birthday, after a day of presents he liked, a delicious meal at a nice restaurant, a visit with his beloved grandparents, good wishes from family and friends, and his favorite gluten-free and dairy free birthday cake, I asked him what he liked best about his birthday. I honestly thought he’d tell me the shrimp he’d had for dinner, since he’d rated his meal at “one hundred percent.” However, after a quick reflection on the day, he smiled and said, “Everything!” I thought nothing was better than that until last night when Ed asked him the same question, and he responded again with the same answer. Trying to give me credit for arranging the details of a seemingly perfect birthday, Ed asked Alex who had made his birthday so special. Without a moment’s hesitation, Alex replied, “God!” Only too happy to give proper credit and glory to God, I’m not only thankful for the wisdom and faith He has given my precious son but also for always answering our prayers in ways that only He knows best, those “good and perfect gifts…from above.”

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17

Sunday, December 11, 2016

To Be a Friend

“…and everyone would have a friend and right would always win and love would never end: this is my grown-up Christmas list.”––Linda Thompson, “My Grown-up Christmas List”

“What does Alex want for Christmas this year?’ asked one of my colleague friends this week. As I explained that he has not given me any ideas but seems to trust my gift selection judgment, I was pleased that she had asked about him. However, I was not surprised by her interest because she has known him all of his life and has always shown genuine affection toward him. When he was little, she would let him sit in her lap and type on her computer. In addition, she would have him check the large calendar on the wall made up of number tags placed on hooks to make sure the days and dates were accurate, knowing his love for calendars and his eye for detail. Her daughter has the same birthday as Alex, so she and I always remember to pass along birthday wishes. Over the years, she and I have shared concerns and celebrated milestones, and I have appreciated that she never fails to ask about Alex and how he is doing.

Later in the week another colleague friend and I compared notes about how our adult sons are doing. She remarked of her son, “This isn’t the life I would have chosen for him, but he’s happy, and that’s what’s important.” I understood completely because I could say the same thing about Alex. She, too, has known Alex all of his life and has taken a keen interest in him, always asking how he is doing and celebrating his progress with me. Moreover, she is one of the most faithful readers of my blog who often writes kind and thoughtful comments in response to my posts. Not only does she cheer for Alex, but she also cheers for me. That friendship is precious to me.

Recently, another colleague friend who also faithfully reads my blog told me, “When I grow up, I want to be Alex.” She went on to explain how pleased she is now that he is able to do fun activities, such as going to concerts and basketball games, because he has improved so much. As we often talk about our adult children who are nearly the same age, we find a great deal of common ground, despite the impact autism has on Alex’s life. In addition, she has passed along her compassion to her children, who also take an interest in Alex. In fact, her sweet son sent back gifts (a commemorative lanyard, a Dale Earnhardt, Jr. model car, and an autograph from the winner of the race) from last year’s NASCAR’s Brickyard 500, knowing that Alex is a huge NASCAR fan. Her enthusiasm for Alex’s accomplishments makes me thankful to have her as a friend.

Along with these three special women, I have been blessed with other people in my life who have been loyal and true friends, consistently taking interest in Alex. One of my male colleague friends who has now retired used to ask about Alex’s current interests with, “What’s Alex into these days?” Another now retired male colleague endeared himself to me by his sincere and consistent interest in Alex, always asking me to say hello to Alex for him. Because autism impairs Alex’s social skills and hinders making friends on his own, I am grateful for my friends who treat Alex as their friend, too.

On the other hand, I have some people whom I consider friends who rarely if ever ask about Alex, even when we have long conversations about their children. I would think that the natural inclination after telling about their kids would be to ask, “How’s Alex?” To be honest, this oversight hurts my feelings, even if it is unintentional. Maybe they think that talking about an adult with autism is uncomfortable, like talking about someone who has passed away. I suppose they could be so busy with their own lives that they don’t have time for mine. Perhaps now that he’s an adult, people just don’t know what to say or ask. However, simply asking, “How’s Alex?” would be more than enough for me.

On Fridays, Alex’s behavioral therapist and I take him out in the community so that he can practice the social skills and language skills he has been learning. One of our favorite places to go is the nearby Burger King, where the employees are especially friendly and kind to us. Two of the ladies have taken a special interest in him, and now he is on a first-name basis with them. Alex is to Burger King what the character Norm was to the television show Cheers. When he walks in the door, they call out his name, which delights not only him, but also his therapist and me, too. He rewards their kindness with a big smile, says hello to them by name, and then tries to control his excitement at seeing them by leaning forward and putting his hands between his knees as he shudders with joy. I have to think that his obvious enthusiasm in seeing them makes their day.

Last Friday, the two Burger King ladies whom Alex considers his friends gave him a beautiful Cubs World Series commemorative ornament they had especially made for him and personalized with his name on it, knowing that he is a huge Cubs fan. While Alex isn’t always able to express his feelings easily, I think they could see how tickled he was by their thoughtful gift. Of course, as his mother, I was quite touched by their kindness. That ornament now holds a place of honor on our Christmas tree and will always remind us in future years of two women who saw the good in Alex and reached out to him in friendship. Their kindness will be remembered, especially by Alex, who every night in his prayers requests: “God bless Tammy and Cassie.” Indeed, God bless those who bless our lives with kindness.

“A friend loves at all times…” Proverbs 17:17

Sunday, December 4, 2016

Surprising Gifts

Yesterday, an autism mom friend shared an interesting article on Facebook that caught my attention. Entitled “Top 10 Traits of Individuals with Autism Which Get Overlooked,” this blog essay explains unique gifts people with autism sometimes possess. [To read this article, please click here.] A common saying regarding individual differences among people with autism goes, “You’ve met one person with autism, you’ve met one person with autism”; however, certain traits appear to be common in many people with autism. This particular article highlights some rare talents that many people with autism seem to share. As I read through the list, five of them immediately resonated with me because they describe some of Alex’s unique gifts perfectly.

“People with autism have exceptional long-term memory.” This trait highlights the ability to remember details from many years ago and the aptitude for rote learning and recollection of facts. If Alex hears or sees a particular year, he will often tell us something he remembers specifically from that time, even if it seems rather insignificant, such as having a cold on that date. He often reminds us of the date of the Super Bowl Sunday when he was little and threw up seven times. (I, on the other hand, chose to block out the memory of that day!) As I play Jeopardy with Alex every weekday, I’m amazed by the specific facts he can recall, especially about history, geography, and science. When I ask him how he knows this information, he can tell me his source of facts, such as a particular book, website, or television show. Apparently, he can visualize these details in his mind and rapidly retrieve them from his memory, which amazes me. Also, he always remembers everyone in the family’s birth date, which helps me send birthday cards on time every year.

“People with autism excel at auditory and visual tasks.” Besides his ability to visualize details from his memory, Alex also has exceptional auditory memory. He would be a whiz at the old game show Name That Tune because he can recognize familiar songs after only hearing a few of the opening notes. In addition, he can tell us the name of the group or singer of the song. Because of his eclectic taste in music, he seems to have a large music library stored in his head. We are also discovering that he knows many song lyrics as he has recently begun singing aloud.

“People with autism demonstrate impressive math skills.” I would go a step beyond and say that Alex has savant math skills. His ability to calculate math problems mentally with accuracy and speed is nothing short of astonishing. Unlike the character of Raymond Babbitt in Rain Man, however, Alex can use his math skills in practical ways and has an awareness of how much things cost, probably because he watches The Price Is Right every day and follows the stock market faithfully. In addition, he pays attention to gas prices, noting their rise or fall. When we are driving in the car, he will tell us whether the gas prices have gone up or down since previous day, and he informs us of the difference in prices between gas stations as we drive along. For example, he will say, “Gas is two cents cheaper at Luke Oil than at Family Express.” This requires him to notice the prices on the gas signs, remember the exact amounts, compare/contrast the prices, calculate the difference, and communicate to us his observations. He saves us from having to check the Gas Buddy website, and we find his enthusiasm about sharing his data endearing. Again, his keen memory serves him well because he can not only see numbers in his mind to solve problems, but he can also easily recall over one thousand digits of pi, picturing the sequence of numbers as clearly as if he were reading them off the page.

“People with autism have an eye for detail.” Alex is amazingly perceptive, especially when it comes to his beloved numbers. For example, whenever our car thermometer registers the outdoor temperature as 63 degrees, he’ll excitedly tell us, “Sixty-three! That’s like Mommy’s, Aunt Tammy’s, Aunt Kim’s, Aunt Babs’, and Aunt Pat’s height in inches!” (Yes, he has several female relatives who are all the same height.) He also notes when the car clock registers the same number in minutes as the temperature, such as when it’s 5:43 and 43 degrees. He’ll enthusiastically share this information and exclaim, “That’s rare!” (However, it’s not as rare as one might think because this phenomenon seems to happen at least once a week.)

Alex also has an eye for errors, which makes him an excellent proofreader. At basketball games, he often tells us when the scoreboard is wrong, yet he patiently waits for the mistakes to be corrected. He brings us books that have typos and asks us to fix the misspelled words or missing punctuation, showing that he inherited his English teacher parents’ bent for precision in writing. Last week, he brought me one of his NASCAR books and indignantly told me that it was incorrect about what year Michael Waltrip won the Daytona 500. Alex was right; the book was wrong. Last night as we were watching Music Choice on television that features songs from particular decades along with quick facts flashed on the screen about the artists, he suddenly said, “There’s an apostrophe missing.” Not seeing the error at first glance, I asked him to show me where. He pointed to the screen and explained, “Didn’t needs an apostrophe.” By golly, he was right; they had forgotten to put the apostrophe in that word. Not only am I impressed with his precision and ability to notice small details, but I’m also pretty proud as the one who taught him grammar that he knows the rules so well.

“People with autism are non-judgmental.” Alex doesn’t seem to notice people’s appearance; therefore, he does not judge people based on the color of their skin or their size, although he is impressed by very tall people. Perhaps because his eye contact is not very good, he pays more attention to people’s voices. More important to Alex than how people look is how they act, and he seems to be intuitive about people, recognizing and appreciating those who are kind to him. He seems to see past the exterior and focus on the interior––the good hearts he can easily recognize.

Despite the difficulties autism has imposed on Alex’s life, he has been blessed with special gifts that allow him to see the world in unique ways. As his speech has improved over time so that he can convey his thoughts, we have been able to glimpse how his mind works and how he perceives the extraordinary in ordinary occurrences. Moreover, we have been able to share his enthusiasm for everyday life and the joy he finds in unexpected places.

“It is the one and only Spirit who distributes all these gifts. He alone decides which gift each person should have.” I Corinthians 12:11

Sunday, November 27, 2016

'Tis the Season

Alex loves the holiday season and eagerly anticipates this time of year every year. This week, we enjoyed a pleasant Thanksgiving dinner with my parents that he helped me cook. Yesterday morning, we were able to get together for breakfast at one of Alex’s favorite restaurants with my siblings and their families and my parents. Although being in a crowded restaurant in a group of fourteen people could have been daunting for Alex, he handled the situation quite well and enjoyed being with his grandparents, parents, aunts, uncles, and cousins.

After about an hour, however, I noticed the subtle appearance of the dreaded “claw.” When Alex is overwhelmed or not happy about something, he bends his wrist down into an acute angle and bobs it up and down to let us know he’s not pleased. I was pleased that he waved the claw under the table so that only I could see it. Using the techniques that I have learned from his behavioral therapist, I told him that I knew he was upset and asked if I could do anything to help him. He waved his claw again to make sure I had seen it and then quietly told me, “It’s too hard to remember the haircut calendar.”

The haircut calendar is Alex’s go-to excuse that simply means he’s overwhelmed. He used to tell us when he was upset that he “never wanted to use the typewriter again!” No one was making him use a typewriter; this was just something he blurted in frustration. However, we know better than to minimize his anxiety, so I calmly told him that he had just had a haircut two weeks ago, which seemed to calm him a bit. I also gave him the option of going home––not as a punishment but as a way to escape a situation that may be upsetting him. He insisted that he wanted to stay, and he was able to use calming skills so that he was able to snap out of whatever was bothering him and enjoy the rest of the time. While I wish Alex didn’t have to suffer from anxiety, I’m happy that he has learned to deal with being upset without causing a scene and that he can calm himself instead of escalating into a meltdown. This is a huge blessing.

Yesterday evening, I had to employ some calm down skills of my own. Alex needed to have blood drawn for his regular six-month lab tests to make sure he is healthy and to check that his medication levels are appropriate. Thankfully, he never minds having blood tests, and lab technicians always remark on what a good patient he truly is. My anxiety was with the check-in clerk who was rather insistent that he needed to fast for ten to twelve hours prior to these tests. However, Alex does better in the evening when he is calmest; therefore, we always do the testing in the evening. Although I explained this to the clerk, she made some remark about the tests being inaccurate and told me that she would tell the lab technician that he hadn’t fasted.

Even though I knew I was doing what was best for Alex, I somehow felt as though I was being chastised and wondered if I would get more flack from the lab technician. However, we soon discovered that the warm and friendly lab technician was an autism mom herself who completely understood why we did not have Alex fast prior to the test. She explained that she never made her son fast before tests, either. I prayed for a sympathetic lab technician and was given an empathetic one who told us to ask specifically for her by name whenever Alex needed a blood draw. Not only did she enthusiastically praise him, but she also gave him apple juice as a reward for his bravery. As we chatted with her afterward, we were thankful to have someone who completely understood our situation. That was a huge blessing.

Earlier in the week, Alex had been talking with his behavioral therapist who was asking him about his favorite times of the year. He explained that his favorite month was December because Christmas and his birthday are in December. He went on to tell her that Christmas is his favorite holiday. When she inquired why, he immediately responded, “Because it’s Jesus’ birthday!” Of course, I was delighted by his answer, as was she.

As I put up Christmas decorations over the past few days, I’ve been trying to remember to savor the effort instead of resenting the extra work. I have decided that I’m going to do things that bring joy. My mom had asked Alex what his favorite decorations were, and he told her, “The cousins’ stockings.” Ironically, I had not yet put up the dozen small stockings with his cousins’ names on them, so he was remembering them from last year. In fact, I was debating about putting them up at all because it was one more task to do. However, once I discovered that they were his favorites, I immediately hung the stockings on our stair railing because they bring Alex joy, which brings me joy.

After I finished hanging our huge assortment of ornaments on our Christmas tree yesterday, Alex carefully surveyed my work, smiling as he studied the ornaments. When I asked him what he thought and what grade he’d give me, without hesitation, he enthusiastically told me, “A+!” Certainly, that high praise made the effort worthwhile, but his joy was an even greater reward. Most of all, I’m thankful for my son who reminds me that the true importance of Christmas is finding joy and celebrating the birth of God’s son. What greater blessing could there be?

“You will conceive and give birth to a son, and you will name him Jesus. He will be very great and called the Son of the Most High. The Lord God will give him the throne of his ancestor David.” Luke 1:31-32

Sunday, November 20, 2016


As we celebrate Thanksgiving this week, we recognize all the blessings for which we are truly thankful. Although we have been through times when being grateful wasn’t always easy, we made sure to find something to appreciate about each day. Now that Alex is doing quite well, we make certain not to take these good days for granted and praise God for all He has done for us.

For good health, we are thankful. Not only have Ed and I been blessed with remarkably good health so that we can take care of Alex, but Alex is getting healthier all the time. The inflammation that has plagued him, as evidenced by acne, yeast overgrowth, and irritability, appears to be under control. His complexion is clear without needing acne medication, his appetite is good, he sleeps peacefully, and his mood is nearly always pleasant and upbeat. Praise God for these blessings!

For financial stability, we are grateful. Even though autism has brought about unexpected expenses, such as multiple therapies, nutritional supplements, and a gluten-free and dairy-free diet, all of which are needed to address various issues, we have always had plenty of money to pay for them. Even though we are both teachers, and I only work part-time so that I have more time to devote to Alex, our salaries have been more than enough to meet our needs. Now that Alex is an adult, he receives disability funding that allows him to receive additional therapies and support. Praise God for these blessings!

For Alex’s support team—his psychiatric nurse practitioner who manages his anxiety medications, his case manager who oversees his budgets and coordinates his services, his behavioral therapist who teaches him coping and social skills, his music therapist who helps his language skills and anxiety, and his respite care companion who engages him in conversation and allows him to enjoy a peer friendship––we are appreciative. Not only are all of them exceptional at their jobs, but they are also wonderful people who see the best in Alex and strive to make him better through encouragement. Along with us, they celebrate his accomplishments. Praise God for these blessings!

For the progress Alex has made that allows us to enjoy a “normal” family life, we are thankful. Now that we can go to sporting events, concerts, restaurants, stores, and parks, enjoying our time together as a family, we remember when Alex wasn’t able to do any of those activities and feel fortunate that he has learned to cope with his anxiety. For many years, we couldn’t go anywhere together, and now we engage in recreational activities almost daily. Praise God for these blessings!

For family and friends who have supported us and prayed for us, we are filled with gratitude. When we struggled through difficult times and felt overwhelmed, we knew that we had loved ones who cared deeply about us and our situation. We also appreciate those who understand that sometimes the seemingly small steps are in actuality great milestones for Alex. I am especially thankful for my parents who have been Alex’s greatest cheerleaders. For their unwavering faith in him and unconditional love for the three of us, they have more than earned the honor of having Alex name them first when he’s asked who his friends are. Praise God for these blessings!

For the grace of God who saw us through difficult times and for the healing of God who has made Alex better, we are overwhelmed with thankful praise. When we couldn’t see how things were going to work out, we knew that God had plans for our lives and trusted Him to arrange the details, which He did. When we didn’t know what to do, God guided us to the right choices and the right people who could help us. When we didn’t know how to reach Alex because he was filled with anxiety, God never let him go and kept him safe until the storm passed. During that time, Alex developed an unwavering faith and trust in God that carries him through life. Praise God for these blessings!

Not just on Thanksgiving, but every day, we realize just how blessed we are, especially when we see how far Alex has come and recognize all that we were given so that he could make great progress. Praise God for these blessings!

“I will give thanks to You, Lord, with all my heart; I will tell of all of Your wonderful deeds. I will be glad and rejoice in You; I will sing the praises of Your name, O Most High.” Psalm 9:1-2

Sunday, November 13, 2016

Voting for Alex

The results of last week’s election in which Donald Trump was named the next President of the United States came as a shock to many people. As I discovered last week, I wasn’t the only autism parent quietly supporting the now President-elect. Just as others chose their candidates based upon issues of major concern to them, my primary focus in life is Alex. As a pro-Alex supporter, I wanted a President willing to address the issue of autism directly and one unafraid to question the role vaccines may play in autism. That candidate was Donald Trump.

In the CNN Republican Debate on September 16, 2015, Mr. Trump was asked about autism and his position on vaccines. He explained, “Autism has become an epidemic…Because you take a baby in, and I’ve seen it, and I had my children taken care of, over a long period of time, and over a two or three year period of time, same exact amount, but you take this little beautiful baby, and you pump­­––I mean, it looks just like it’s meant for a horse, not for a child, and we’ve had so many instances, people that work for me, just the other day, two-years-old, two-and-a-half-years-old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic…I’m in favor of vaccines; do them over a longer period of time, same amount, just in little sections. I think you’re going to have––I think you’re going to see a big impact on autism.”

Not only did Mr. Trump state without hesitation that there, indeed, is an autism epidemic, but he also firmly stood his ground on suggesting that the current vaccination schedule may be linked to autism. Moreover, he expressed concern for those families whose lives have been impacted by autism.

During that same debate, fellow Republican candidate and esteemed neurosurgeon Dr. Ben Carson noted, “We are probably giving way too many in too short a period of time.” As an admirer of Dr. Carson, I was pleased that he offered his trusted medical opinion as well as supporting Mr. Trump’s position regarding the need to revisit the current vaccine schedule.

Of course, the mainstream media had a field day, criticizing Mr. Trump and his comments regarding the potential link between vaccines and autism. For example, The Washington Post ran an article the day after the debate on September 17, 2015, entitled, “The origins of Donald Trump’s autism/vaccine theory and how it was completely debunked eons ago.” Similarly, the online magazine Slate posted an article on the same date with the title, “Donald Trump Uses GOP to Push Anti-Vaccination Myths.” Even CNN, the host of the debate, joined in the mocking on September 19, 2015, by posting an opinion piece on their online site written by a debate coach entitled, “Trump’s autism claim on vaccines is a disgrace.” While journalists jeered him, autism parents cheered him.

In contrast, his opponent Secretary Clinton made her stance on vaccines quite clear. In a Tweet by Hillary Clinton on February 2, 2015, this position is presented: “The science is clear: The earth is round, the sky is blue, and #vaccineswork. Let’s protect all our kids.” #GrandmothersKnowBest.” Comparing those who question vaccine safety to those who believe the earth is flat is nearly as demeaning as deeming Trump supporters as “deplorables.”

What was especially important to me is that Mr. Trump has not swayed in his concerns regarding the potential link between autism and vaccines over time. On December 29, 2007, long before he was a political candidate, autism mom Kim Stagliano praises him in her Age of Autism online article titled, “Brilliant Trump Revises Vaccine Schedule for His Son.”

In the article, Mr. Trump is quoted in an interview with Palm Beach Politics: “When I was growing up, autism wasn’t really a factor,” Trump said. “And now all of a sudden, it’s an epidemic. Everybody has their theory. My theory, and I study it because I have young children, my theory is the shots. We’ve been giving these massive injections at one time, and I really think it does something to the children.”

He went on to say, “When a little baby that weighs 20 pounds and 30 pounds gets pumped with 10 and 20 shots at one time, with one injection that’s a giant injection, I personally think that has something to do with it.”

Furthermore, he explains how he and his wife decided to handle vaccines with their own son, “What we’ve done with Baron, we’ve taken him on a very slow process. He gets one shot at a time then we wait a few months and give him another shot, the old-fashioned way. But today they pump the children with so much at a very young age. We do it on a very, very conservative level.”

To me, this says that Donald Trump is bold enough to question the establishment, especially when his child’s well-being is at stake. Moreover, he clearly has compassion for those families who have been affected by autism and is willing to look into potential causes.

President-elect Trump, many autism parents supported you because you unwaveringly expressed the concerns we have long held. You have the opportunity to change the course of the autism epidemic by launching investigations into how the current vaccine schedule affects children. We’re counting on you to “Make America Great Again” by helping us find ways to make our children healthy again and to prevent other children from having to struggle with autism. Please don’t let us down.

“For where your treasure is, there your heart will be also.” Luke 12:34

Sunday, November 6, 2016

Alex's Two Words About Autism

Recently, I read an inspiring blog entry published exactly a year ago today from one of my favorite autism mom writers, Emily Colson, the author of Dancing with Max, a memoir about her son who has autism. Not only is she a talented writer, but I also admire her strong faith in God and her ability to find humor in the midst of autism chaos. Most of all, I understand her unconditional love for Max, who, like Alex, is in his mid-twenties, but retains a childlike innocence.

In her essay, “Max’s Two Words About Autism,” she describes her enthusiasm about an upcoming appointment with a new doctor who has a daughter with autism. [To read this essay, please click here.] Sharing this information with Max, she notes, “The word autism has been a part of the conversation in our home since Max was very young.” Similarly, we have always been open with Alex about autism and how it affects him, not wanting him to think we have been keeping secrets from him. Moreover, we never want him to feel ashamed that he has autism, so we have candidly told him everything we know about the condition. Believing that knowledge is power, we have wanted Alex to gain power over a condition that has hindered his speech, fine motor skills, and social interactions.

Wondering what Max would say about autism, Emily Colson explains, “Thoughts of this journey and the bittersweet sound of the word swirled in my mind. None of this has been easy, yet God has made it beautiful. Autism has been the fertile ground in which God has grown my faith.” Brilliantly, she has described the duality of life with autism: the struggles and the triumphs. I know that the challenges of raising a child with autism has taught me greater patience and compassion and developed a stronger faith in God than I would have had without those challenges.
When Emily Colson asks her son to describe autism in two words, he tells her, “Love. Peace.” Clearly, he has found the good, despite the struggles of autism. Curious as to what Alex’s impressions of autism are, I asked him the same question Max was asked, “Can you tell me two things you want someone to know about autism?”

To be honest, I thought that Alex would respond with the phrase he uses when either he doesn’t have an answer or doesn’t want to give an answer: “What would be good?” However, I knew that if I wanted his honest opinion, I would need to force myself not to lead him with my own editorial comments. To my surprise, he immediately answered, “Mercury. Anxiety.”

While Max’s answers were more heartwarming, Alex’s answers were candid and revealed his understanding of what he has faced. He knows that he was diagnosed with mercury poisoning when he was younger, probably the result of the preservative thimerosal in the vaccines he received as an infant and young child. Moreover, he remembers being treated for the accumulation of this neurotoxin through chelation therapy for three years and perhaps even remembers our joy as each subsequent test revealed his levels of mercury decreasing. In addition, he knows that he cannot have shots that contain thimerosal, such as flu shots, and he must have composite instead of mercury-containing amalgam fillings in his teeth. Just as he knows to avoid glutens and dairy products because he has sensitivities, he realizes that mercury is harmful to him, too, and must be avoided.

In addition, Alex recognizes how anxiety affects his mental, emotional, and physical states. He realizes that at this point in his life, medication helps keep him calm so that anxiety does not escalate to levels that overwhelm him. Also, behavioral therapy and music therapy the past few years have taught him coping skills so that he can take control of his emotions and deal with situations he finds difficult. Most of the time, he copes very well. However, anxiety will still arise at times, and we find ways to help him deal with it constructively. For example, this morning, his world was rocked by the time change. Even though he has known for weeks about the switch from Daylight Savings Time back to Standard Time, the fact that his beloved clocks were wrong made him nervous. Until we changed the clocks with him this morning, he struggled to control his nerves, which gave him away by the adrenaline rush that made his hands and voice shaky. Although he deals with anxiety better now than he did in the past, this aspect of autism still plagues him daily.

While I would take away all of the struggles Alex has had to face through the years in a heartbeat if I could, I believe that he is also a better and stronger person because of what he has faced in life. As I watch him tenaciously and patiently work at tasks most people would abandon in frustration, I am thankful that God has equipped Alex with what he needs to overcome the challenges autism presents. Every night as I listen to Alex’s earnest prayers and requests to bless other people, I am grateful that God has given him a pure heart and strong faith that allows him to believe everything will be all right. As the scriptures describe, God has given us “beauty for ashes,” and we feel blessed that Alex has overcome many obstacles so that he can enjoy life to the fullest.

“...He will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair.” Isaiah 61:3

Sunday, October 30, 2016

Facing the Future

Last week, I read two very sweet and uplifting Key Ministry blog entries written by mothers of children with Down Syndrome. While both essays express concerns for their children’s future, they also acknowledge the hope we have, knowing that God will provide for our needs. In “Worried About Your Child’s Future? Pray for Daily Bread,” Gillian Marchenko explains that people ask her if her special needs children will ever live on their own or if they will always live at home with her. [To read this essay, please click here.] She herself asks the question, “What will it be like to care for adults with disabilities as opposed to young children?”

As she considers this uncertainty about the future, she remembers the line from The Lord’s Prayer that her family recites daily: “Give us this day our daily bread.” She notes, “There is no way I can parent today without the daily strength God graciously gives…The only way to parent is day by day.” She concludes her essay, stating, “That’s how the future questions will resolve.”

Similarly, Ellen Stumbo addresses a major question parents of special needs children ask in her essay, “Will Our Daughter with Down Syndrome Live with Us Forever?” [To read this essay, please click here.] As she notes, “…who thinks about their child moving out on the day they’re born?” However, with the realization that her child’s life will be different, she candidly admits, “I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job.” Over time, she realizes, “I really, really enjoy my daughter.” Describing the sweet moments she and her husband share with this precious daughter, she comes to the conclusion: “So what if she lives with us forever?”

As the mother of a young adult with autism, I, too, have dealt with the concerns of taking care of an adult with special needs and wondered if and when he will be able to live on his own someday. In a little over a month, he will turn twenty-five, and people who don’t know our situation will ask if he still lives at home with us or lives in a group home for disabled adults. Even people who do know our situation will ask if and when he will move to a group home. Because of changes in how state funding is allocated for people with disabilities, he won’t be moving out anytime soon. However, Ed and I are perfectly fine with that. To borrow a line from Ellen Stumbo, we really, really enjoy our son.

To be truthful, I sometimes wonder how age will affect my ability to take care of Alex, performing the grooming tasks he cannot perform for himself. As I sit on the floor to clip his toenails, I’m thankful that I’m still limber enough at my age to sit cross-legged on the bathroom floor and lift myself up to standing position when I’m done. When I twist and turn my hand and head daily to make sure I have carefully shaved Alex’s face without any nicks or whiskers left behind, I’m thankful my hands are still nimble. As I help him get dressed every day, lifting his shirt onto the top of his head that towers nine inches over the top of my own head, I’m thankful that somehow God has given me the strength and energy to take care of my six-foot tall son. On those days I worry about how much longer I’ll be able to do these tasks for Alex, I watch Ed, who is ten years older than I am, perform similar caregiver tasks, and know that I don’t have to think about those things for at least ten more years.

When I am tempted to be overwhelmed by all the things I need to do for Alex or to fret about what lies ahead in our future, I have to remember to take things one day at a time, or, as Gillian Marchenko describes, “to parent day by day.” To calm myself, I often repeat aloud the scripture Philippians 4:13, which is posted on my refrigerator as a reminder: “I can do all things through Christ who strengthens me.”

Moreover, I often think about the worries of the past and realize that either they never came to pass or they resolved themselves over time. For example, Alex has pectus excavatum, a condition in which his breastbone dips down on his chest. When he was little, his pediatrician scared the daylights out of me, telling us that if it became worse, he could face a grueling surgery to fix the breastbone so that it didn’t press on his heart and lungs. Thankfully, that never came to pass, and the dip has become less pronounced over time. Nonetheless, I spent countless and useless hours worrying about a surgery we would not have to face.

Other concerns have taken care of themselves in time. For a long time, we wondered if Alex would ever be able to sleep through the night, but eventually we all were able to enjoy peaceful, uninterrupted sleep. Often when I awaken at my usual time in the morning, I thank God that Alex slept through the night, remembering the many nights he awakened and needed us to settle him back to sleep. For many years, we questioned if he’d ever be toilet trained, and eventually, he learned to use the bathroom independently and consistently. In fact, his main bathroom concern currently is that we always have enough toilet paper, and he gives us daily reports on how low the roll is running.

Perhaps the main question I have asked throughout the years has been, “Will our lives ever be normal?” After dealing with Alex’s developmental delays and anxiety and unpredictable behavior, we thought that we might never enjoy the peace and calm of “normal” life. However, because he has made such good progress, we are able to enjoy a more “normal” life than we thought possible, going to restaurants, concerts, and sporting events as a family. Last week during our quarterly meeting with Alex’s support team, as we told about the various activities he enjoys, his case manager remarked that Alex has more fun than anyone she knows. She’s right, and since he’s having fun, so are we.

As I look forward to the future, I don’t have all the answers. I don’t know when Alex will be able to live independently or how long he will live at home with us. At this point, Ed and I are delighted to have him home with us, enjoying the fruits of our labors to make him into the pleasant young man he has become. Moreover, we know that God has plans for him and trust that He will guide us in making any future decisions. Perhaps the greatest guide for handling the uncertainties of the future has been watching Alex, who doesn’t fret too much about his future, other than wondering how he can manage to fit in his schedule all the things he wants to do. In many ways, Alex is like the lilies of the field that Jesus describes in Matthew 6:28: “Consider the lilies of the field, how they grow; they toil not, neither do they spin.” Alex trusts that God and Ed and I will always take care of him, so he need not worry about the future. If he can be that faithful, so can I. Besides, we’re having too much fun right now and don’t need worry to spoil any of that.

“And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.” Romans 8:28

Sunday, October 23, 2016

Next Year Is Here

“As sure as God made green apples, someday, the Chicago Cubs are gonna be in a World Series.”~longtime Cubs announcer, the late Harry Carray, 1991

Last night, we, like thousands of other Chicago Cubs baseball fans, watched in delight as our favorite team won the National League Pennant for the first time since 1945. This victory was especially sweet for Cubs fans after many years of drought when our team simply could not get their act together. Having only won World Series titles more than a century ago in 1907 and 1908, under manager Frank Chance, who also played first base as part of the famed Tinkers to Evers to Chance double play trio, the Cubs have earned their nickname, “the lovable losers.”

Despite the Cubs having little success in the past post-season games, Chicago Cubs fans are known as the most loyal in baseball. Taking losses in stride, they are often quoted as saying at the end of every disappointing season, “Wait ‘til next year.” However, this year’s Cubs team with its depth of talent has allowed Cubs fans to proclaim, “Next year is here!”

As a baseball fan growing up in New York City, Ed became accustomed to cheering for teams who enjoyed consistent success, unlike the Cubs. In the past fifty years, the New York Mets have earned five National League Pennants and won two World Series. Even better known is the New York Yankees dynasty that has won forty American League Pennants and twenty-seven World Series. After moving here to the Midwest more than thirty years ago, Ed couldn’t understand the complacency of Cubs fans, who simply shrugged off losses and waited for next year. He has frequently remarked that New York fans would never let their baseball teams off the hook so easily and wondered why Chicago Cubs fans take losing in stride.

Growing up as a Cubs fan in the era of Ernie Banks, Billy Williams, and Ron Santo, I adopted that same “Wait ‘til next year” mantra, figuring that someday the Cubs would eventually put together everything they needed to be a winning team. Alex, whose interest in the Cubs has been especially strong the past two years, also took on the typical Cubs attitude of not being upset about losses and just enjoying wins as they came along. Fortunately, the Cubs of his generation––Anthony Rizzo, Kris Bryant, and Jake Arietta––aren’t carrying the team alone and are backed by teammates of equal and perhaps even potentially greater talent. However, throughout the season, he took losses in stride, noting,  “Sometimes they lose, and sometimes they win, just like the stock market goes up and down.”

Perhaps the attitude of the Cubs fans that Ed sees as complacent is actually an eternal optimism that things will get better. Moreover, the tenacity Cubs fans show in continuing to support a losing team is something to be admired as loyalty rather than scorned as foolishness. As someone who believes that all experiences in life have some valuable lesson, I believe that being a Cubs fan has been good preparation for being an autism mom. Through the years, I learned to deal with disappointment that things didn’t turn out as planned, and I learned the value of having to wait patiently for good things to happen. Moreover, the slogan, “Wait ‘til next year” developed an optimistic attitude in me that things will get better in time along with an eternal hope for the future.

Just as the Cubs have enjoyed one of their best seasons ever, Alex has been coming into his best season ever, too. In recent months, we have watched him make progress in small ways that signal he is putting behind losses to work toward victory. From the improved fine motor skills that allow him to hang up his jacket without any help to his being able to string together compound-complex sentences with perfect syntax and meaning to walking confidently with his head up straight and his arms at his sides, Alex shows signs of healing.

In addition, he has learned to deal with the intense anxiety that plagues him so that he can not become overwhelmed by changes in plans that used to upset him and so that he can be truly content instead of fretting over little things that used to bother him. For example, earlier in the week, I could see that he was becoming anxious one afternoon, even though he didn’t express his upset in ranting or aggressive behaviors as he once did. He seemed pensive and suddenly asked to take a bath, which is what soothes him when he’s overwhelmed. I asked him what was upsetting him, and he began to shake, but calmly told me he had a difficult decision: whether to watch the Cubs game or the Presidential debate. While this kind of dilemma could have sent him into a meltdown in the past, he used the calming skills his behavioral therapist has taught him.

After discussing his various options of taping one program or the other or switching back and forth between the two shows, he decided upon taping the debate while watching the game. However, he was able to add another option as he watched the debate on the computer while watching the game on television. What impressed us most, however, was not his ability to multitask, but his ability to resolve an internal conflict by reasonably discussing his options and never escalating his anxiety. After a few minutes of talking, he stopped shaking, was content with his choice, and didn’t even need the soothing bath, after all. He proved that he, too, has become a winner, overcoming obstacles autism has presented him. Believing in Alex, just like believing in the Cubs, has paid off, and I am enjoying the fruits of my tenacity and optimism as well as God's goodness, celebrating victory that is even sweeter than I anticipated. Go Cubs! Go Alex!

“For the vision is yet for the appointed time; It hastens toward the goal and it will not fail. Though it tarries, wait for it; For it will certainly come, it will not delay.” Habakkuk 2:3

Sunday, October 16, 2016

Curing Autism

Last month, Autism Speaks, perhaps the best-known autism organization, revised its mission statement for the first time since it began in 2005. As Michelle Diament notes in the article “Autism Speaks No Longer Seeking Cure” in the October 14, 2016, edition of Disability Scoop, “one notable objective is no more.” [To read this online article, please click here.] Even though Autism Speaks merged with Cure Autism Now in 2007, the new mission statement eliminates the goal of curing autism.

The previous mission statement asserted: “We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.” The revised mission statement instead mentions, “advancing research into causes and better interventions for autism spectrum disorders and related conditions.” An Autism Speaks board member explains the reason for the change: “…the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum––rather than something that has to be done to.” I suspect this references the neurodiversity movement in which some adults with autism see the condition as simply a variation of brain wiring and convey resentment that autism is viewed as a disease to be cured. Sadly, most people with autism lack the language skills to be able to express how they feel, and many of them deal with debilitating conditions that exist with autism, including anxiety, seizure disorders, and digestive issues.

Whether Autism Speaks is bowing to the pressure of a small percentage of people with autism or whether they are abandoning a crucial and worthy pursuit, this organization is not using its extensive financial resources in ways that would be most beneficial to families dealing with autism. However, they are not the only ones failing to use their funding wisely. The National Institutes of Health, an American government agency that oversees billions of dollars for medical research, wastes money every year on autism research that is essentially worthless.

In her Age of Autism October 13, 2016, article “2015 NIH Autism Grants­––Why We Are Making NO Progress,” Katie Wright provides extensive data regarding how the National Institutes of Health allocate autism research funding. [To read this article, please click here.] Ironically, Katie Wright’s parents started Autism Speaks when her son was diagnosed with autism. However, she has been critical of the organization and its focus on genetic research instead of environmental research.

In this article, she notes that despite nearly $200 million dollars spent annually by the NIH on autism research, after nearly a decade, no real progress has been made in finding a cause. Of this amount, the primary research money is spent on genetics and brain imaging studies with only a fraction of research funding––$8 million––being spent on environmental studies with regard to autism. Additionally, she notes that twenty percent of these environmental studies focus upon foreign countries, such as Finland, Denmark, Korea, and Jamaica, none of which has helped to determine causes of autism in American children.

In addition, she notes that the National Institutes of Health spend five times as much research funding on behavioral intervention as biomedical intervention, even though many children and adults with autism also deal with serious autoimmune and gastrointestinal issues as well as seizures. Moreover, many of the behavioral studies duplicate previous research and have nothing new to offer. As she concludes, “There has been little to no return for autism families or the taxpayer from this research.” Considering the increasing rates of autism and the costs of taking care of these children potentially all of their lives, everyone should be concerned about how taxpayer money is being wasted on research that is not producing, nor even likely to produce, a cure for autism.

Recently, The Atlantic published an article entitled “The Dangers of Snake-Oil Treatments for Autism” describing how parents of children with autism seek various nontraditional methods to help their children. [To read this article, please click here.] Author Alisa Opar focuses upon autism mom Ariane Zurcher’s desperate attempts to help her daughter, Emma, by pursuing a wide variety of interventions. According to Emma, only occupational therapy was beneficial. Her mother has embraced neurodiversity, stating, “My entire focus changed. Instead of fighting against Emma’s neurology and trying to cure this heinous disorder, I started finding ways to help her flourish.”

The author notes that 88% of children with autism are treated with alternative therapies, which she describes as having “no scientific evidence to support these purported benefits” as well as few being “adequately tested for safety or efficacy” with some being “downright dangerous.” Furthermore, she states, “These unproven treatments do not come cheap, and some are harmful.” In this article, parents who pursue alternative therapies are portrayed as desperate, gullible, and ignorant. For example, she states, “For most parents, who have little understanding of how science is done, wading through claims about alternative treatments can be befuddling.” Additionally, she quotes clinical psychologist Catherine Lord, who describes autism research as “probably very confusing for parents.”

However, the article also provides clues as to why parents seek alternative therapies. Columbia University psychiatry professor and child and adolescent psychiatrist Jeremy Veenstra-VanderWeele is quoted: “We do not have treatments that relate in any way to what causes autism spectrum disorder, or that really relate to what’s happening in the brain.” Moreover, the author states, “The list of treatments with a solid evidence basis is short.” Perhaps if the NIH funded better research and Autism Speaks rededicated its focus and funding toward curing autism, more treatments would be available to parents.

We parents who have pursued alternative therapies, such as sensory integration, chelation, special diets, nutritional supplements, cranialsacral therapy, and other interventions we believed would help and not harm our children with autism, had to do something to make our kids better. We could not wait around for traditional medicine to come up with treatments that may be as “downright dangerous” (such as the FDA-approved medication Risperdal) as alternative treatments are purported to be.

Until a cure for autism is found––and I believe that not only will a cure be found but also that parents will be crucial in finding that cure––parents need to keep searching for safe ways to help make our children better. We cannot rely upon Autism Speaks nor the National Institutes for Health nor conventional medicine, all of which have failed our kids miserably. In the meantime, I keep praying for the day that the cure for autism will come and strive to keep Alex as healthy as possible, knowing that with God, all things are possible.

“Lord, Your discipline is good, for it leads to life and health. You restore my health and allow me to live!” Isaiah 38:16