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

Thankful

 
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

Sunday, October 9, 2016

Learning to Serve; Serving to Learn

 
One of Alex’s current favorite activities is going out to eat at restaurants. Because his behavior has improved significantly over the past few years, he has been able to enjoy these outings at least once or twice a week. In fact, we use dinners at restaurants as a reward for good behavior, and this offer motivates him to be cooperative. He doesn’t need anything fancy; he’s happy with any family-style restaurant whose menu offers food he can eat on his gluten-free and dairy-free diet. Fortunately, most of the places we take him offer excellent service. Moreover, he’s become such a regular in some restaurants that they know him by name and remember that root beer is his beverage of choice.

On Friday and Saturday we had completely contrasting experiences at two different family restaurants we visited. At our favorite Friday spot, the waitress greeted Alex by name, kept his glass filled with root beer, and provided the usual excellent service this restaurant consistently offers. However, on Saturday, the waitress mixed up Alex’s root beer with my Coca-Cola, forgot to bring one of Ed’s side dishes, and had to be asked repeatedly for beverage refills, despite the signs at every booth proclaiming “Endless Refills” on soft drinks. Perhaps the most frustrating aspect of the poor customer service was that she really didn’t seem to care, nor did she apologize for keeping people waiting. Needless to say, we will probably cross that restaurant off our list of possible places to take Alex.

Perhaps I’m more observant about how restaurants treat their customers because I worked as a waitress at a well-run family-owned restaurant all the while I was in college. The owners expected their staff to give the best service to customers and trained us well. Looking back on that experience, I realize that many of the skills I learned then in my late teens and early twenties have proven valuable to my life as an autism mom.

First, keep people happy and updated while they wait. As a waitress, that means keeping coffee warm with frequent top-offs from the coffee pot and refilling soft drinks as needed. In addition, if the kitchen is taking a long time to prepare the food, reassure the customers that their meal should be ready soon. As an autism mom, I know that keeping Alex happy while he waits someplace often involves a snack and a beverage, as well as distracting him with conversation or something to read, and reassuring him that the wait won’t be much longer.

Next, check in frequently to make sure things are going well, but don’t hover. A good waitress makes sure the order is correct when delivering the food, but still returns a few minutes later in case the customers realize they need something, such as steak sauce. Throughout the meal, the waitress should be available in the vicinity of where the customers are seated, but without making them feel that they are being stalked. As an autism mom, I have to keep an eye on what Alex is doing and be available if he needs my assistance, but I also have to let him do things on his own. When he’s had enough of my presence, he’s not above letting me know, as he used to tell me, “Mommy is leaving now!”

While attending to needs, don’t waste steps. A waitress with a coffee pot in hand should offer to refill all of the customers’ coffee cups instead of running back and forth between the coffeemaker and the booths. We were taught never to have empty hands. If we weren’t carrying food or a coffee pot, we were to be picking up menus or emptied plates. This efficient busyness was terrific training for my life as an autism mom, where I multitask most of the day to keep things rolling smoothly for Alex.

In addition, as a waitress I was taught to remain calm, even during the busiest times. Invariably, on hectic weekend evenings, the food for several tables would be ready at the same time, yet my job was to take the time to give the best service while making sure the food didn’t sit too long before being taken to the tables. At times, I felt overwhelmed and wanted to cry or go running out of the restaurant; however, I could not get rattled. Similarly, my role as an autism mom requires me to be able to juggle several things at the same time while never letting Alex know I’m under stress. If he senses that I’m upset, he will become upset, too, so it’s to my advantage to stay calm at all times.

Another lesson I learned as a waitress was the old adage, “The customer is always right.” Even when the customer was actually wrong, we were instructed to keep them happy. Occasionally, that meant taking unfair accusations from people, but that was also good training for my later life as an autism mom. During meltdowns when Alex has falsely accused me of making a mistake or saying something I didn’t say, I know to let him think he’s right until he calms down.

Probably the most valuable thing I learned as a waitress was to apologize, even if it was not my fault. Everyone makes mistakes, and the ability to admit the errors and to say, “I’m sorry” usually helps smooth a situation.  I found that most customers quickly got over their upset when I genuinely apologized for something that went wrong. As an autism mom, I apologize often to Alex: “I’m sorry, but I can’t hear you.” or “I’m sorry we don't have any; we need to go to the store to get more.” or “I’m sorry that you’re not happy.”  In turn, Alex has learned to admit his mistakes and to apologize quickly. Apologizing shows an acknowledgement of the other person’s frustration, disappointment, or anger and strives to make the situation better. Unfortunately, apologizing seems to be a social nicety that some people lack, but I’m pleased that Alex realizes the value of saying, “I’m sorry.”

Looking back on my experiences of waiting tables, I recognize that God used my first job as training for the most important job of my life: being Alex’s mom. Although being able to balance dinner for four on my arms without a tray is a pretty neat trick, what’s more impressive is how God knew what I would need years later and allowed me to learn in unexpected ways. By learning to serve others, to multitask, to remain calm under pressure, and to deal with people who are upset, I was better prepared for the challenges of parenting a child with autism. The longer I live and the more I experience, I realize that everything has a purpose, even when we don’t see it at the time.

“God has given each of you a gift from His great variety of spiritual gifts. Use them well to serve one another.” I Peter 4:10

Sunday, October 2, 2016

Flu Shots: Some Facts to Consider

 
Flu season hasn’t even officially started yet, and already I’m tired of seeing and hearing all the ads urging people to get flu shots. Last week while I was on the phone refilling Ed’s blood pressure medicine, my thyroid medicine, and Alex’s anxiety meds, I had to listen to the pharmacies’ pleas to get our flu shots right away, especially since they are “free.” In fact, I’ve seen some places offering gift cards as an enticement to customers to get flu shots at their stores. In addition, my friendly and well-meaning pharmacist eagerly offered to give me a flu shot when I was picking up refills. I declined then, as I also did during my regular thyroid check when my doctor offered one. I don’t do flu shots anymore.

When I was younger, I received annual flu shots, fearing that my job as a middle school teacher put me more at risk for exposure to the flu. Some students feel the need to stand very close to me as they share their fears of illness along with their germs before I send them to the school nurse. Unlike other jobs where a person just calls in sick, teachers must construct elaborate lesson plans for substitute teachers, even when we are half-dead with illness. In addition, taking care of Alex requires that I always be at my best. Consequently, I can’t get sick. I used to think that flu shots were a good way to avoid illness. However, after Alex was diagnosed with autism and I was diagnosed with two autoimmune disorders, I began researching ways to make both of us healthier. My research led me to conclude that flu shots were not the answer for us.

Before getting a flu shot this year, I would suggest researching and considering the following factors.

Limited Effectiveness: This year, the Centers for Disease Control has decided that the nasal version of the flu vaccine should not be given because it is ineffective. This vaccine that contains a live weakened form of the virus is usually preferred for children who do not like getting shots. However this year, it was found to have an effectiveness rate of only three percent. While the shot version of the flu vaccine performs better, the CDC admits that various factors hinder making the shot effective, such as predicting which strains of flu will be present in the coming season. Consequently, they predict that flu shots will be effective in only fifty to sixty percent of the people who have them. Those are not impressive odds.

Side Effects: Before getting a flu shot, patients should consider the potential risks. The package insert for the flu vaccine lists serious adverse effects that have occurred after flu shots. These conditions include the blood disorder thrombocytopenia (a blood platelet disorder that can cause serious bleeding), immune system reactions such as anaphylactic shock, nervous system disorders including convulsions and Guillain-Barre Syndrome, vascular disorders that can involve the kidneys, along with skin and other disorders, such as cellulitis and “influenza-like illness.” In trying to prevent the flu, a patient at worst can become sicker from the vaccine or even die, or at least have the same symptoms of flu. Patients should also be aware that “no interaction studies have been performed on interaction between influenza vaccines in general and other vaccines or medications.” In other words, no one has bothered to test whether mixing flu vaccines with other vaccines or medications is dangerous or not.

Ingredients: The package insert for the flu vaccine gives pause for thought, too, in listing the ingredients found in flu vaccines. The least concerning component is sucrose (sugar), and ovalbumin, or albumin from egg whites seems harmless, except for those with egg allergies. Hence, those with egg allergies are usually warned not to get flu shots. In addition, people with allergies to antibiotics should also be concerned because the shot contain the antibiotics neomycin sulfate, and polymyxin B. These shots also contain beta-propiolactone, which is considered a carcinogen, a potential cancer-causing agent. These ingredients occur in “residual amounts.” One should investigate the main ingredients, as well.

The vaccine insert lists ingredients that can be found and researched on Drugs.com. Sodium chloride is used to supplement the body with fluids and can cause rapid heartbeat and shortness of breath. Monobasic and dibasic sodium phosphate are both laxatives that can cause nausea and vomiting and should not be taken by people with kidney disease or who have had gastric bypass surgery. Potassium chloride is a mineral used to treat potassium deficiency and has similar side effects to sodium phosphate. Patients with kidney disease and the autoimmune disorder Addison’s disease are warned not to use potassium chloride. Another mineral, calcium chloride, can cause nervous system and cardiovascular side effects. Monobasic potassium phosphate, which controls the amount of calcium in the body, can cause dizziness and vomiting and should not be taken by people with kidney disease. Sodium taurodeoxycholate is listed as a bile acid and an irritant. Injecting any of these compounds could be problematic, aggravating previous health issues and potentially causing new ones. In addition, most flu shots contain thimerosal, which contains mercury, a heavy metal toxin harmful to the nervous system. In fact, we had to use chelation therapy with Alex because he suffered from mercury poisoning, probably caused by his childhood vaccines in the 1990's. Thimerosal was removed from childhood vaccines in 2001, yet flu shots continue to use this compound as a preservative.

What led me to research flu shots in greater detail was a letter Alex recently received from our pharmacy encouraging him to get a flu shot. The letter also contained a vaccine screening form with several questions that made me question how safe the flu vaccine really is. In addition to questions about various allergies and immune system issues, Question #10 asks: “Have you ever had a seizure disorder for which you are on seizure medication, a brain disorder, Guillain-Barre Syndrome or other nervous system problems?” Thanks to autism, the answer to that question is a big resounding “YES.”

After the questionnaire, the form provides fine print legalese in which the patient agrees to understanding all the potential risks of the vaccine and releases the pharmacy from any legal responsibility for any damage the shot may cause. The final line should give a person pause for thought: “I understand and agree that I will not be able to sue [the person who administered the shot and the pharmacy] for any injury or property damage I may suffer as a result of the immunization.” Essentially, you take a risk, and they incur no responsibility.

Consequently, Alex and I will not be getting flu shots this year or likely ever. His neurological issues associated with autism and my autoimmune issues put us at risk for complications. Besides, I don’t like the idea of being injected with questionable compounds, and the limited effectiveness of the vaccines makes it not worth the gamble, even if it is free. Another pharmacy we use offered helpful suggestions for staying healthy during flu season: wash your hands; avoid touching your eyes, nose or mouth, especially in public; get plenty of sleep; be active; drink plenty of water; and manage stress. While they also suggested getting a flu shot, Alex and I will skip that tip, follow their other guidelines, and take vitamin D-3 as recommended by our doctors. In addition, we will follow the 3 P’s for good health my retired internist once shared with me: proper nutrition, plenty of rest, and prayer. Armed with those, we trust God will keep us safe and healthy.

“Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You.” Psalms 25:5

Sunday, September 25, 2016

Friends

 
Earlier this month, the media reported the heartwarming story of the Florida State University football player, Travis Rudolph, who was visiting a Florida middle school and saw a student sitting by himself at lunch. This boy, Bo Paske, has autism and usually eats lunch alone. However, on that day, Travis Rudolph asked Bo if he could sit with him, and this story of kindness went viral on the Internet. While this incident revealed how children with autism are often isolated from their peers, it also showed the tremendous value of a simple act of kindness. This story drew attention to the problems kids with autism have regarding social skills and apparently had a happy ending. Not only did Bo enjoy lunch with a college football player, but also reportedly his classmates now choose to join him for lunch so that he no longer has to eat by himself.

Last week, another story about how kids with autism feel isolated from their peers also went viral in the media. As Fox News reported in an online article, “New Jersey dad pens touching letter after autistic son says he has no friends,” autism dad Bob Cornelius posted a letter on Facebook this week after seeing a worksheet that asked his son to list his friends, and his son had written “No one.” [To read this article, please click here.] What was especially heartbreaking about this situation was that the father saw the worksheet posted on the wall as a display for back-to-school night. At the time, the father didn’t read through all the responses; he simply took a quick picture of the worksheet. After he got home, he then saw what his son had written in response to the prompt, “Some of my friends are…”

In his candid Facebook post, Bob Cornelius explains the sad truth that his eleven-year-old son, Christopher, has never had a friend. While he recognizes that some of his son’s behaviors, such as hand flapping and noise making and asking unusual questions might make some people feel uncomfortable, he also notes, “Every adult that meets him is drawn to him.” [To read this Facebook post, please click here.] In addition, he says that while his son’s peers have never been mean to him, they have never included him, either, leaving him out of activities and making him realize that he has no friends.

Reflecting no anger or bitterness for his son’s situation, this autism dad’s letter admits that he doesn’t think “this post is going to change the world.” However, he asks parents to talk with their children about making the effort to show empathy and “include those that are different from everybody else.” As he points out, “at the end of the day, it comes down to compassion, empathy and understanding.” I am hopeful that his post will have greater impact than he expects, and I hope the media attention his letter is getting will make a difference in the lives of those kids with autism who don’t have friends. Perhaps people will recognize that making an effort to interact with children and adults who have autism not only blesses those with autism but also themselves through these acts of kindness and compassion.

As an autism mom, I can empathize with the sorrow Christopher’s dad feels that his son doesn’t have friends. In the sense of typical friendship, Alex has never really had those kinds of friends, either. By home schooling him, we protected him from that reality because he never saw himself as different from his peers. I remember doing a worksheet with him one time that was similar to the one posted on the back-to-school night wall. When Alex was asked to list his friends, he immediately told me, “Nanny,” his grandmother and my mom. At the time, I thought that was sweet; after all, she’s been my dearest friend all of my life and someone I know will always be loving, kind, and loyal to my son. However, growing up, Alex has never had friends his own age. Fortunately, he doesn’t seem to notice or care, and now that he is an adult, he can enjoy the company of the adults whom he has always preferred, anyway.

After reading this story the other day, I asked Alex who his friends are. Without hesitation, he named his dad and me and Nanny and Grandpa. Then I asked him who his friends are who are not his relatives, and he named his wonderful support team: Jennifer, Noel, Jessica, and Zika. (I would also add his aunts, uncles, and cousins who have been loving and understanding, along with some of my friends who show him kindness and interest.) Clearly, Alex has a keen sense of who cares about him. Moreover, if I had to handpick friends for him, I would choose those he considers his friends because I know they always have his best interests at heart. As his social skills develop, I see Alex’s interactions with others improving and enabling him to make more friends in the future, which is encouraging.

To me, what was equally troubling about this story of Christopher’s not having friends was the lack of good judgment and compassion his teacher showed by posting this worksheet for back-to-school night. I gather from his dad’s Facebook post that his son is in a special needs class. Surely, the teacher realizes that special needs kids, especially those with autism, have difficulty making friends. According to Christopher’s worksheet, his teacher’s name is Ms. Feld, and I would like to write a letter to her.

Dear Ms. Feld:

Like you, I am a middle school teacher of special needs children. Perhaps you have not had the more than thirty years of teaching experience that I have had. However, the posting of Christopher’s worksheet on the wall for everyone to see his heartbreaking response to the question regarding who his friends are was at best lacking good sense and at worst simply cruel. Did you stop to think about how his parents might feel in seeing that he had written “No one” in response to who his friends are? Did you consider for a moment that posting this worksheet for anyone to see was just wrong? In fact, let’s go back to the beginning. Did you even recognize that this worksheet was not appropriate for special needs children? As teachers, we know that we must modify assignments to make them suitable for our special needs students. If you ever plan to use this worksheet again, I strongly suggest that you omit the question about friends so that no child has to feel the sense of loss that Christopher––as well as his parents––had to feel as a result of your carelessness. In fact, I have a better solution. Take that worksheet and place it in the paper shredder so that you are never tempted to use it again. After all the publicity this worksheet has received this week, I hope that you have learned, as we teachers must constantly strive to do, an important lesson: try to put yourself in your students’ shoes before putting them on the spot.

Sincerely,

Mrs. Byrne, middle school English teacher/Alex’s mom

“A friend is always loyal, and a brother is born to help in times of need.” Proverbs 17:17

Sunday, September 18, 2016

Enlightenment

 
“The time has come,” the Walrus said, “to talk of many things: Of shoes––and ships––and sealing wax, of cabbages and kings–­–“ ~Lewis Carroll
"The time has come," the mother said, "to talk of many things: Of greeting dudes––and autism, of power out and kings––"

As a teacher, some of my favorite moments are when students finally comprehend a concept that has eluded them. When the figurative light bulbs brighten above their heads, their eyes shine, and their smiles widen as they feel pride in that moment they finally understand. As Alex’s mom, I feel a tremendous sense of pride when he finally masters a skill he has struggled to learn because autism has impaired his nervous system in various ways. Those moments when enlightenment appears are precious because he feels a sense of accomplishment, and he revels in the praise we give him.

This week during his music therapy session, he demonstrated some real breakthroughs. Lately, his behavioral therapist has been working with Alex on greeting people without being prompted by us. For years, we have been saying to Alex, “Say hello to [whomever he needs to acknowledge],” hoping that through sheer repetition, he would eventually offer a proper greeting on his own. However, his therapist has suggested that we wait and allow him to say hello on his own without prompting. On Thursday, when his music therapist––who is the coolest guy we know––arrived, he greeted Alex by saying, “Hey!” Fighting my mom’s need to intervene, I watched as Alex formulated a response. It was worth the wait. He grinned at his therapist and responded, “Hey, Dude!” Since his therapist often calls Alex “Dude,” this response reflected their friendly relationship appropriately. Moreover, he also made his music therapist and me laugh with this unexpected greeting.

To move Alex away from OCD routines and to develop independent decision making, his music therapist has been encouraging Alex to choose songs for their session as they go instead of listing them all at the beginning. This spontaneity was a little difficult for Alex at first, but he seems to be adjusting and is becoming better at coming up with songs on his own. However, this week he suddenly shut down in the middle of their session. In the past, Alex might have waved his bent hand (aka the dreaded “claw”) in disgust or even grabbed his therapist’s arm to let him know he wasn’t happy. Instead, Alex simply became quiet, mulling over how to let his therapist know what was wrong. With some prompting and encouragement, Alex was able to express that he wanted to know how many songs they were going to do that day. After his therapist gave him the answer, he was able to continue happily through the rest of their time together, which shows growth in his ability to deal with anxiety. In fact, his therapist described their session as “fantastic” because Alex handled his upset so well and recovered quickly once he knew how things would proceed. Clearly, he is learning how to manage his concerns and communicate them so that he can receive the reassurance he needs.

Another unexpected incident allowed Alex to show how well he has developed coping skills in a situation that would have thrown him for a loop in the past. When I came home from work on Wednesday, Ed told me that the power had come on just minutes before I had arrived and that Alex had handled the morning without electricity amazingly well. Even though he had no Internet access for his iPad nor cable television to watch his beloved game show, The Price Is Right, he apparently never became upset and handled the unexplained power outage calmly. At one point, Alex pulled a flashlight out of the kitchen drawer. Ed thought perhaps he was imitating me because I carry around a flashlight during storms, always wanting to be prepared in case the lights do go out. Alex then headed for the dark, windowless bathroom with a flashlight in hand, ready to use the toilet. Instead of panicking about not being able to use the bathroom in the dark, he solved the problem independently. Apparently, my lessons about being prepared in the event of a power outage had made an impression on him. Without our prompting, he knew what to do, and we were pleased that he handled the entire situation so well.

Alex, however, isn’t the only one who sees the light literally and figuratively. Sometimes we enjoy the same sense of accomplishment when we solve the mysteries regarding something he’s trying to convey to us. Because of Alex’s idiosyncratic use of speech, he’ll sometimes say things, and we have trouble figuring out the context. For example, we still don’t understand why he used to say “Country Crock” whenever we talked about going to Ed’s office. Now that his speech is clearer, he can better explain to us why he says certain things that appear random on the surface but have some meaning to him.

Ever since he was little, I have regaled him with various goofy songs I know while grooming him. He has found these songs amusing and will sit nicely as I brush his teeth, shampoo his hair, and clip his nails. Once I started shaving his face, which he cannot do himself due to his poor fine motor skills and hand tremor, I added the silly ditty “Shaving Cream” to our repertoire. Every time I sang, “Shaving cream, be nice and clean. Shave every day, and you’ll always look keen!” he would immediately add, “Like Richard Petty!” I wracked my brain to figure out what the connection was between the famous NASCAR driver and this stupid song. Recently, he has begun singing along with me, and I finally figured out why he added his own line. He thought I was saying “king” instead of “keen,” and Richard Petty’s nickname is The King. Once I had my “Aha!” moment of enlightenment, I finally understood Alex’s addition to the song. Even after I explained what keen meant, we have gotten in such a habit of adding “Like Richard Petty” to the end that we continue it for old time’s sake and as a joke we share.

Through the years, we have known that much more was going on in Alex’s mind than he was able to share with us. However, as he has developed his coping skills and language skills over time, he has been better able to convey what he has been thinking. We are delighted that he can express himself more easily because not only can he share what he’s thinking and feeling, but he also shares a quick wit that entertains us. As we always suspected, beneath that quiet exterior lies an active mind, and we are thankful to have greater insights into our son, whose unique perspective enlightens us in new ways.

“Arise, shine, for your light has come, and the glory of the Lord has risen upon you.” Isaiah 60:1

Sunday, September 11, 2016

When Someday Finally Arrives

 
This past week was one that should have thrown Alex off course, but it did not. With his dad and I settling back into school routines the past few weeks, Alex could have resented that we are not always home. With additional appointments and job responsibilities of meetings and schedules that strayed from their normal times and interfered with family dinners twice this week, Alex could have felt anxious. With his own schedule packed every day meeting with one of his support team, Alex could have been overwhelmed. However, he remained calm, cooperative, and pleasant all day every day. Moreover, he thoroughly enjoyed dinners downtown four evenings as part our community’s annual Popcorn Festival and seemed to ignore the intense heat and sensory overload of having a meal in a crowded outdoor pavilion. I would venture to say that he was having a grand old time sharing meals with the other festival goers. A few years ago we never could have dreamed that he would handle a week like last week that amazingly well.

A few days ago I was explaining to a friend what Alex was like before we had to hospitalize him for extreme anxiety and agitation. I discussed his drastic change in grooming habits from wanting to be immaculate to being extremely difficult about brushing his teeth and combing his hair. His sleep patterns became erratic, and we dreaded when he would awaken because he was usually belligerent. In fact, most of the day he was a ticking time bomb ready to explode in anger and aggressive behavior, blaming us for anything that went wrong and even things that he simply imagined were wrong. Something had stolen our sweet son from us and sent all three of us into the depths of despair, a period I call “when the wheels fell off the bus.” However, our desperation and Alex’s extreme behavior propelled us to find the help we needed, and God led us to professionals who understood the motivation behind his behavior, and more importantly, knew how to treat his extreme anxiety that triggered the aggression.

While we would prefer to forget those terrible times, stowing them away in an attic of our minds where we never have to see them, remembering them from time to time can be helpful. For others going through similar turmoil, I share our experiences as a way to give them hope that they, too, will get through ordeals and be able to look forward to a time when their lives will return to a new “normal,” whatever that may be. When I look back on the times we were waiting for Alex to get better––to not throw things in anger, to not overreact about minor things, to not live in constant fear––I just kept praying and thinking that someday we would look back on those days and feel thankful they were behind us.

Along with helping others, recalling those upsetting events makes us even more grateful for the progress Alex has made. When Alex refused to talk to us, overwhelmed by his emotions, we prayed that someday we would be able to have real conversations with him where he could express what he was thinking and feeling. Now that the words flow more easily for him, we are thankful that someday has arrived. When we couldn’t take him any place and basically kept him under house arrest because his behavior was so unpredictable, we hoped that someday we could enjoy typical family outings. Now, as we sit with him at restaurants and concerts and sporting events and family gatherings without any fear that he will erupt in anger, we feel fortunate that someday has arrived. When at least one of us always needed to be with him because we didn’t trust what he might do unsupervised, we waited for the day when he could behave himself without constantly being accompanied by us. Now, he goes off on his own to read, watch television, do Google searches on his iPad, and Ed and I never worry about what he’s doing because he has regained our trust. Someday has arrived, and it is sweeter than we could have ever imagined.

As we reflect on how autism has impacted Alex’s life––and in turn, ours––we realize that waiting is a key element. I can recall all the different things we were waiting for him to be able to do finally, such as talk, toilet independently, or sleep through the night, and eventually he was able to accomplish these seemingly simple tasks after many struggles. One would think that I would clearly remember the exact dates of these milestones––when those days we’d prayed for had finally arrived––but they remain vague in details yet strong in feelings of relief and gratitude.

What gives those days of accomplishment even greater meaning is that they remind us that God is always faithful and has a plan for Alex’s future. When I wonder if Alex will ever be able to live on his own, I remember that I wondered if he would ever be able to use the toilet on his own. When I worry what will happen to Alex when I’m not able to take care of him, I remember that God provided mental health caretakers who took precious care of him and knew what to do when we did not. When I pray and hope that God will heal Alex of autism, I remember all the times He restored Alex’s health and led us to caring and dedicated medical professionals who provided what Alex needed to be healthy. By looking back on how far we’ve come, I realize that someday we’ll look back on these times and our current concerns and know that God had us in the palms of His hands, just as He always has. Even though we don’t know when that day might be, we can trust as we wait, knowing that someday will eventually arrive.

“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