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 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


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.


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


“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

Sunday, September 4, 2016

"Sitting on a Rainbow"

“Somewhere over the rainbow skies are blue, and the dreams that you dare to dream really do come true.” ––“Somewhere Over the Rainbow” by Yip Harburg

One of the most upbeat and heartwarming stories in the news this past week focused upon the kindness shown to a middle school boy with autism. [To read an online news account of this story, please click here.] Florida State University football player Travis Rudolph was visiting Montford Middle School in Tallahassee, Florida, on Tuesday with four teammates. At lunchtime, he noticed a student sitting all by himself. This boy, Bo Paske, has autism and usually sits alone during lunch.

Travis Rudolph walked over to the boy and asked if he could sit with him, and the two of them struck up a conversation about football. Someone captured a picture of this special moment depicting the kindness of a young man toward a middle school boy with autism, and this photo has gone viral around the Internet.

Although Bo’s mother posted on Facebook that her son usually eats lunch alone at school, it doesn’t seem to bother him. However, she was understandably touched by the kindness of Travis Rudolph. She wrote, “I’m not sure what exactly made this incredibly kind man share a lunch table with my son, but I’m happy to say that it will not soon be forgotten.”

On Thursday, Bo’s mother, Leah, had the opportunity to meet Travis Rudolph on the television show Fox and Friends and to express her gratitude. Bo was also able to share his enthusiasm about the experience, telling about how Travis had lunch with him and even signed his lunchbox. However, this story just gets better. Bo happily described the experience: “It was kind of like me sitting on a rainbow.” Certainly, that compliment had to make Travis’ day, just as he had made Bo’s day special by choosing to eat lunch with him so that he didn’t have to sit alone that day.

Having taught middle school for more than thirty years, I know how difficult social interactions are for all kids at that age. Add in the impaired social skills often found in autism, and kids like Bo Paske wind up sitting by themselves. However, we need to teach people how to be comfortable with and compassionate to those who are different. One of the nicest compliments I have ever received came last year from one of my nicest honors students, who wrote me in a letter that I had taught her: “Just because people are different doesn’t mean that they should be treated that way. Everyone deserves kindness.” However, I must give the credit to Alex, who taught me how to be comfortable with people who are different, an important lesson I now share with my students.

People probably have no idea how much those kind acts mean to kids with autism, who may even seem oblivious to their attempts to be nice. Fortunately, I have had the opportunity to witness how Alex reacts to people being kind to him and know that he definitely notices even seemingly simple acts. For example, Alex’s behavioral therapist and I take him to Burger King nearly every Friday afternoon for recreational therapy so that he can practice ordering his own food, using manners, carrying his tray, and eating in a restaurant. Once Alex became a regular customer, the cashier, Cassie, and the manager, Tammy, took a special interest in him, and now the three of them are on a friendly first-name basis. Alex lights up with a big smile when he sees these ladies and says hello to them, and they seem equally pleased to see and greet him. In fact, the other day, the cashier told me that she and the manager tease each other about whom Alex likes best, based upon the smile he flashes at them. Then she commented on how sweet he is, which, of course, made my day.

As Alex’s mom, I feel affection and gratitude toward those people who see past the autism-induced awkwardness to the pure and sweet heart of my son. In addition to the broad smile he gives them, I also see him shudder with delight that someone knows his name and acts happy to see him. Moreover, I know that these kindhearted people hold a special place in Alex’s heart because he asks God to bless them specifically in his nightly bedtime prayers.

Kind souls like Travis Rudolph and Cassie and Tammy, who see past the differences in our kids with autism and make the effort to make our children with autism feel welcome, are a blessing. Simply acknowledging the presence of our kids with autism means more than they know to these special kids and their parents. Furthermore, that kindness will be richly rewarded in unexpected ways. After all, what could be better than to be responsible for making a child feel like he was “sitting on a rainbow” or to be included in the heartfelt prayers of a young man asking for God to bless those who matter most to him?

“Don’t forget to show hospitality to strangers, for some who have done this have entertained angels without realizing it!” Hebrews 13:2

Sunday, August 28, 2016

Keeping Score

This summer, one of Alex’s favorite pastimes has been watching baseball. Fortunately, his favorite team, the Chicago Cubs, has put together an amazingly successful season that has made them fun to watch. Every day, Alex checks to see what time the Cubs are playing and what television station is broadcasting their game. As much as he enjoys watching the games, he has also shown remarkable flexibility. For example, if he has someplace to go or something else to do, he doesn’t get upset about missing the game. If the game runs too late in the evening, he will go to bed contentedly, knowing that Ed will tell him the final score of the game the next day. Alex even handles losses (which are thankfully less common than usual this season) pragmatically, repeating a quote Ed has taught him: “Sometimes you win; sometimes you lose.” The only thing better than watching the Cubs win so many games this season has been watching Alex’s enthusiasm for baseball and his favorite team.

Earlier in the summer, we took him to a vintage baseball game at nearby county park. Wearing old-fashioned uniforms and playing by 1858 rules, the players entertained the spectators as they made barehanded catches on what was once an old farm field. Not only was the weather perfect, but Alex’s behavior was also perfect as he followed the game intently and enjoyed himself thoroughly. Once again, he showed the progress he has made by being able to sit calmly and focus on an activity with many people around him. While most people would take this kind of an outing for granted, we savor these family times, grateful for the opportunity to do something fun without worrying that Alex will become overwhelmed by the experience.

In fact, Alex had such a good time that we decided to take him to another vintage baseball game a few weeks ago. This game was played at another park in a neighboring county, the site of a former grist mill. As with the previous game, Alex was engaged in watching not only the baseball game but also casually observing the other people attending the game, listening to the variety of their voices. With the snacks I had brought along for him––an orange Gatorade in one hand and a bag of Fritos corn chips in the other––he was the picture of contentment. We didn’t think things could get any better than that.

After a couple of innings, we took him out to the old-fashioned scoreboard, where my dad, who has kept the scoreboard for a few years, was sitting. Of course, Alex was pleased to see Grandpa, but he was also fascinated by the big box of wooden blocks with numbers painted on them to keep score. Shortly after we arrived at the scoreboard, one of the players scored a run. Instead of putting up the new score himself, my dad handed Alex a wooden block with a number and asked him to place it on the scoreboard. Before I could give reasons why Alex couldn’t do that seemingly simple task, he had proven my unspoken doubts wrong and already put the new score on the board. Moreover, he was pretty pleased about being the interim scorekeeper.

As Alex’s mom, one of the mistakes I often make is enabling him and being too quick to do things for him, knowing his various limitations. Partly because I always want to help him and make his life easier and partly because I don’t want him to get too frustrated (and truthfully partly because it’s faster and easier to do things myself), I often jump in and take over when I should at least let him try to do things on his own. I would have never thought to let him put the number on the scoreboard, fearing that he might drop the number and get upset, thinking that his hand tremor would make lining up the hole of the wooden score block on the small peg impossible, and deciding that walking out on the narrow raised deck might make him nervous. Fortunately, fathers don’t overanalyze situations as much as mothers do, and grandfathers even less so. Without any worries, Grandpa gave Alex a chance, and his confidence gave Alex the courage to try and to be successful.

In an interesting twist, this game was one of the highest scoring games ever, which meant that Alex had to keep changing the score numbers. Following Grandpa’s directions, Alex took the old scores off the board, handed them to Grandpa and took the new score block and hung it on the scoreboard. Although he needed to be reminded which team earned the run so that he placed the number in the right spot, Alex never faltered as he lined up the wooden number blocks on the scoreboard pegs. While that simple task may seem nothing major to most people, because I know how much Alex has struggled with the simplest of fine motor tasks, I was amazed that he did so well.

Moreover, Alex was pleased to have a chance to participate in the game by keeping the scoreboard. After all, numbers are one of his favorite things in the world and combining them with baseball made it perfect for him. As the three of us praised him for what a good job he was doing, Alex beamed with pride. He had learned how to do something new, and I learned something, as well. Instead of thinking about his limitations so much, I need to be willing to allow him to try new things more often. Although he may not always succeed at first, he might surprise us and take to the new task as easily as he did with keeping the scoreboard. To deny him the chance to try is to deny him the chance for joy in knowing that he can do something himself.

Before the summer ends, we’re planning to take him to another vintage baseball game. I don’t know whether he’ll want to help Grandpa keep the scoreboard again or not, but at least I know that if he shows interest in trying, we will certainly encourage him. As Alex has learned, life is more than winning and losing or succeeding and failing; the important thing is being willing to try. Unless we allow him to attempt things that may be difficult for him, Alex will never know the satisfaction that comes with being able to succeed.

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

Sunday, August 21, 2016

To Be Happy

This week, I felt a bit wistful about starting another school year. Although I really like working with my colleagues and students, I felt sad to see our best summer ever with Alex come to a close. Because he has made so much progress, we were able to enjoy many family activities, such as going to concerts in the park, playing games at our local family arcade, dining out at a variety of restaurants, and relaxing together at home. Knowing this transition of my going back to work would mean a time of adjustments for all of us, we tried to make this past week easier for Alex. By giving him a printed agenda of the various beginning of the year meetings I would be attending, I thought it would help him be less anxious about where I was and when I would be home. As he carried around my schedule all of last week, Alex appeared more relaxed than he usually is at the beginning of the school year, and checking off the activities at the end of each day was helpful for both of us. After a week of unusual busyness, we are looking forward to getting back to the usual routine, even as Ed begins his semester this week.

On Wednesday, the first day of classes, two emails appeared in my home inbox that I found interesting, especially since they seemed to be a sign of the positive attitude I’m trying to maintain, even at the end of a terrific summer. The first, which came from our health insurance’s monthly newsletter, is entitled “Happy people: 8 simple secrets they know.” [To read this article, please click here.] Based upon research, the article offers helpful tips about cultivating happiness. This list includes the following guidelines: connect with family and friends, be grateful for good things, help others, think positively, get exercise, have fun and be creative, get rest, and be optimistic. These suggestions seem to be good goals for me to pursue as I begin the school year in order not to become overwhelmed by thinking of all the things I need to do.

Along with this article, I also found some good ideas in an email from psychiatrist Dr. Daniel Amen. In his article “The Number One Habit to Develop in Order to Feel More Positive,” he discusses the problem of ANT––Automatic Negative Thoughts. [To read this article, please click here.] Dr. Amen explains that these automatic negative thoughts he sees in his patients “were robbing them of their joy and stealing their happiness.” He adds that these ANTs are responsible for depression, anxiety, and negativity.

In order to recognize these negative thoughts, Dr. Amen describes a few of the common ANTs. For people who have panic disorders, “Fortune Telling” is common; the person predicts bad outcomes, despite any evidence. In “Mind Reading,” the person believes they know what another person is thinking, and this assumption can harm relationships. Those who engage in “Guilt Beatings” focus on “should, must, ought, and have to” as they feel badly about what they are doing or are not doing. In the “Blame” type of thinking, the person becomes a helpless victim who cannot change a situation, blaming others and not taking responsibility. Finally in “Labeling” the person resorts to name calling, which diminishes the ability to analyze the circumstances clearly. After considering Dr. Amen’s negative thought categories, I realize that I find myself in fortune telling, mind reading, and guilt beating mode at times, and I know that I need to quit making assumptions about what will happen and what others think and to stop being so hard on myself.

Dr. Amen, a neuroscientist, explains how positive and negative thoughts have contrasting physical effects on the mind and the body. Negative thoughts cause the brain to release chemicals that make hands clammy, muscles tighten, breathing shallow, and the heart rate increase. In the brain, negative thoughts impair judgment, learning, and memory. By contrast, positive thoughts warm the hands, relax muscles, deepen breathing, and decrease pulse and blood pressure; in addition, the brain works more effectively. Dr. Amen emphasizes the need to recognize and identify negative thought patterns and to take control of thoughts, emotions, and behaviors in order to “experience peace of mind and joy.” His assertion that self-awareness can change a person’s outlook on life is compelling. Clearly, focusing on the positive is essential to a happy life.

On Thursday evening, our school held its annual open house where parents are invited to meet the teachers. After I finished meeting with my students’ parents, I had the unexpected pleasure of running into a friend of mine whose child attends the school where I teach. In addition, we are both autism moms to sons who tower over us in height. As we happily compared notes about how well our boys are doing and what great summers they both had, we commented about how much we appreciate chatting with someone who “gets it,” who understands what life with autism is really like.

Instead of complaining about the obstacles autism presents in our daily lives, however, she and I began a dialogue about the positive aspects of our lives. We don’t worry about girls breaking our sons’ hearts right now. Unlike parents of typical young adults, we don’t have to worry about our sons driving because they currently don’t have the ability to do so. While some of our family and friends are dealing with the separation anxiety of having their children go away to college, ours are safely home with us. In fact, they will likely be with us for a while, and we’re fine with that, especially because they have become so pleasant, and we enjoy their company. Moreover, we’re delighted that our sons allow us to kiss and hug them without any fear of embarrassing them. For all the things in life that autism has made difficult, we are well aware of the good things that bless our lives and make us grateful to be their moms.

As I work toward eradicating negative thoughts and focusing on the positive, I have the additional blessing of a wonderful role model. Although Alex and I both deal with anxiety, we have learned coping skills that help us to fight our fears, and our faith is the most powerful tool in our arsenal. The vast majority of the time, Alex takes a positive outlook on life, savoring even the smallest of joys––decreasing gas prices, the sound of a pleasant voice, the taste of a favorite food––and realizes that life is to be enjoyed, not endured. Perhaps God knows that I need Alex’s optimistic outlook on a daily basis, so he’s home with me. While I think I have things to teach Alex before he’s ready for the world; he probably knows that he has much to teach me, as well. Until both of us are ready, we will enjoy our time together and know how blessed we truly are to have each other.

“So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can.” Ecclesiastes 3:12

Sunday, August 14, 2016

Alex's Garden

Today is the last day of my summer vacation as I start my next school year of teaching tomorrow. Although I feel wistful about ending what has been our best summer ever as a family, we are delighted that Alex has shown so much promise these past few months. Last evening we went to a party at my brother’s house with more than two dozen people, and not only did Alex behave appropriately the entire time, but he also thoroughly enjoyed himself. Even when he came home, he seemed to be replaying the evening in his mind, smiling in amusement. After a summer filled with walks in the park, downtown concerts, old-time baseball games, evenings at the local arcade, meals at favorite restaurants, relaxing on our screen porch, following his beloved Chicago Cubs on television, and family gatherings like the one last night, Alex has enjoyed a rich and full summer. Watching him enjoy himself and knowing he has been content has blessed our lives immeasurably.

The summer began with some trepidation, however, as his psychiatric nurse practitioner recommended that we reduce one of his medications for anxiety because he was doing so well. With the coping skills he has learned in therapy, Alex has developed appropriate ways to calm himself when he feels overwhelmed. Although we feared that he might regress in his behavior with this medication reduction, the opposite has been true. Instead of being more anxious, he has been remarkably calm. Another benefit to this change has been that his mind is sharper, and we have seen his quick wit return along with improvements in his speech. Of course, we are thankful for this progress and for the wisdom of his nurse practitioner who knew what Alex needed to get better.

One of our summer projects has been the evolution of Alex’s garden. At the beginning of summer, I asked Ed if he had any plans for the patch of weeds that was taking over a section of our backyard along our back fence. Wisely, he realized that I probably already had a plan in mind and was willing to go along with what I wanted to do with that overgrown mess. Bless his heart, he spent days tearing out all those weeds so that we could start over with a rock garden. After hauling five tons of river rock and laying seventy paving bricks along the edges, Ed completed the hardest work of the task. Then the three of us worked together on the creative aspect––choosing what should go in Alex’s garden.

As we ran around to all the garden stores in our area, we talked about what would look good in our new rock garden and have meaning for our family. We enjoyed our outings, searching for those items that would complete the garden, and when we couldn’t find what we wanted, we searched on the Internet to find the items that seemed elusive. Along with the items we purchased ourselves, we added to the garden some decorations we bought with an Amazon gift card given to us by my parents as an anniversary gift. After thinking and planning and discussing and searching and a lot of hard work on Ed’s part, Alex’s garden came to fruition.

Because of Alex’s interest in weather, the garden has a windmill so that we can observe the speed and direction of the wind.

Knowing that red is Alex’s favorite color, we found this red flower that decorates the garden and also spins in the wind.

We also have a rain gauge to measure precipitation. The little red wheelbarrow is a reminder of all those rocks and bricks Ed hauled back there. The dozen solar lights along the edge make the garden look like a disco at night as they change from red to blue to green and back throughout the night.

Because Alex’s favorite animal is the turtle––perhaps because, like him, it takes its time yet steadily moves along––we found a turtle statue to sit upon the stump of a tree that was cut down a few years ago.

An even better find was the statue of a little boy who looks like Alex holding a turtle.

Since Alex loves keeping track of time, we searched and searched for an old-school timekeeper, a sundial. He picked this one out on Amazon, and the adage “Time flies” seems appropriate for a summer filled with fun where time, indeed, did fly.

This stepping stone seemed a perfect reminder of our time spent this summer working together on this garden and savoring the blessings and joy God has given us as a family.

In many ways, Alex’s garden is symbolic of our life as a family. From a chaotic and tangled mess of weeds––autism––we worked together as a family to create order and to accomplish our goals. We discussed and planned and searched for what we needed. We celebrated what makes Alex special. After steadily working and patiently waiting for what we needed to find, suddenly all the pieces seemed to fit together. And, as always, we looked around at our blessings and thanked God for His goodness. Alex’s garden will stand as a testimony of how God answered our prayers to make Alex better and will remind us of a summer filled with joy and even greater hope for our future.

“Things are going to happen so fast your head will swim, one thing fast on the heels of the other. You won’t be able to keep up. Everything will be happening at once––and everywhere you look, blessings!” Amos 9:13

Sunday, August 7, 2016

Looking Back, Looking Foward

This summer, one of my projects has been starting to convert our old home movies on video from VHS to DVD format. Last weekend, I made  a DVD copy of our wedding video from twenty-eight years ago, which Ed and I enjoyed watching, reminiscing about our special day and remembering little moments that we had forgotten over time. As I watched a younger version of myself walk confidently down the church aisle, I recalled that I felt more nervous than I appeared. However, I also know that at the time I felt certain about my faith in God, my love for Ed, and my hope for our future. What I did not know as that smiling bride is how all three of those would be tested by raising a child with autism and how those challenges would actually strengthen my faith, love, and hope.

Because Alex has been doing so well this summer, I have had more time to do projects that I have been postponing when he needed me to entertain and/or supervise him nearly constantly. Instead of just surface cleaning the house, I have had the time to do deep cleaning, which has led me to some discoveries that have taken my breath away for a moment. When Alex was extremely agitated four years ago, he would write seemingly random numbers in ballpoint ink on any surface he could find. Most of the time, I would see these numbers right away and scrub them off the walls, the toilet, the television, etc. What I was unable to erase, I found clever ways to cover with paint or wallpaper or strategically placed curtains, pictures, and tablecloths. For one thing, I didn’t want Alex to think this behavior was acceptable, and for another, I didn’t want any reminders of his temporary insanity.

As I wiped down woodwork and doors this summer, I discovered tiny reminders of that frightening and uncertain phase when Alex’s behavior spiraled out of control. Although I thought I had eliminated those scrawled numbers he had written in a state of agitation, I ran across numbers in plain sight that I shouldn’t have missed. I suspect I just thought they were nicks or spots on the woodwork. On three closet doors in three separate rooms, Alex had written numbers right at my eye level. Unlike many of the numbers he wrote all over the house, these showed control because they were small, even, and legible––a date, the year 2001.

To be honest, I’m not sure what the significance of that date was to Alex; perhaps it made an impression on him because the year after that we moved to this home from our old house. To be fair, he wrote all kinds of dates everywhere, and these just happened to be ones I somehow missed seeing. However, these numbers left behind, much like watching old videos, reminded me just how far we have come. Unlike the confident bride filled with faith, love, and hope, at that time I was a terrified mom whose faith, love, and hope were tested mightily because I didn’t know how to help Alex deal with whatever fears and frustrations were making him behave in such a bizarre way. However, I had to rely upon my faith in God, my love for Ed and Alex, and my hope for the future to get through an ordeal that made Alex, Ed, and I better and stronger.

As much as I’d like to erase completely those terrible times––just as I erased and hid the numbers Alex wrote––from my memory completely, I know that remembering them is just as important and perhaps even more important than remembering the good times that we preserve so carefully in photographs and videos as well as in our minds. Stumbling upon those dates written on the doors was necessary to remind never to take the blessings of God for granted. When we were desperate, we prayed for answers, and He gave us healing, hope, and help. Moreover, we were supported by family and friends who prayed for us during those difficult times.

Approaching the end of a summer that has been our best ever, thanks to how well Alex is doing, thereby allowing us to enjoy activities and everyday life as a family, we know how blessed we are because of what we have overcome. Ed and I often compare notes on how well Alex handled situations that would have upset him in the past, and we take great pride in all of his accomplishments, especially since autism has made his life more difficult. When I look back over old photographs or old blog entries, I see that we thought he was doing well at other times, and we were grateful for that progress. However, we did not know that he could be as happy and healthy as he is now. Not only are we grateful for these blessings, but we also have even stronger hope for our future, knowing that God has a greater plan for Alex’s life than we can envision. As we look back on where we have been, we can look forward confidently, knowing that God holds Alex’s future safely in His hands.

“The Lord will work out His plans for my life––for Your faithful love, O Lord, endures forever. Don’t abandon me, for You have made me.” Psalm 138:8