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

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

Sunday, July 31, 2016

Consolation and Joy

 
Yesterday, Alex spent most of the evening relaxing on our back screened porch, lying in the hammock we had given Ed for Father’s Day. After a busy week filled with activity and a bit of anxiety, he probably just needed to unwind.

On Monday, we took him for his annual eye examination and were pleased by how well he cooperated. His optometrist does a great job of working with him to assess his vision, and the combination of reciting numbers and letters on the eye charts holds Alex’s interest, of course. When the first chart was put up on the wall, the assistant asked Alex if he could read any of the letters, and he said no. Thinking that he was looking in the wrong place, I pointed to the chart and questioned him myself. Again, and seemingly a little hurt that I didn’t believe his first response, he insisted that he couldn’t see any of the letters. The assistant then switched to the next larger size of letters, and Alex could easily read them aloud. He was telling the truth; his eyesight had simply gotten a little worse over the past year. With a new lens prescription, we picked out new frames nearly identical to the ones he’s been wearing for two years, and we were told the new glasses would arrive in about ten business days.

As a reward for being so pleasant at the eye doctor, we took him to our county fair that evening, which he really enjoyed. Watching him maneuver through crowds and handle all the sights, smells, sounds, and general confusion, we were pleased with how calm and content he remained the entire time we were there. In fact, observing the rather rude behavior of many other fair goers makes me think that they could also benefit from the lessons Alex has learned in behavioral therapy about using good manners and respecting personal space.

On Tuesday, Alex visited the dentist for the second time in a week because the regular six-month checkup last week revealed a cavity that needed filling. Because the sensation of numbness is a little overwhelming for him, we had practiced at home beforehand using the numbing cream and cotton swabs our dentist had given us last year and suggested we use prior to having a filling. Thanks to the expertise and kindness of our dentist and his assistant, Alex handled the drilling and filling amazingly well. In fact, he smiled right before the dentist began drilling and afterward told us that he liked going to the dentist “one hundred percent.” Of course, we are truly thankful to have understanding doctors who reassure Alex to gain his complete trust so that they can give him proper care.

On Wednesday, Alex’s peer companion came to spend the afternoon with him, and they seemed to enjoy each other’s company. As she kept him entertained, I tackled organizing his room. Filling a large trash bag with things he no longer needs, I realized how far he has come because I didn’t worry that he would have a meltdown if and when he discovers I’ve thrown away his random lists and odd souvenirs so that he can find his prized possessions without being distracted by clutter. That evening we took him shopping at various stores and were impressed by how well he now navigates through aisles (again better than most typical people), staying out of other people's way, and never bothering anything, just stooping or craning his neck to look at items that intrigue him.

On Thursday, Alex rolled with changes nicely when his music therapist suddenly had to cancel their session that afternoon because he was having car trouble. This was on top of his altered schedule of missing behavioral and recreational therapies last week because his behavioral therapist was on vacation. Nonetheless, Alex understood the situation and handled it well. That evening, we took him to a concert in our downtown park, something he’d been looking forward to all summer, seeing one of his favorite bands, the Spazmatics. Despite the crowds and loud music, Alex thoroughly enjoyed the 80’s music, swaying to the beat and even singing along to songs he knows.

On Friday, we were just heading out the door to go out to one of Alex’s favorite restaurants, Round the Clock in Chesterton, when our electricity suddenly went out, probably due to intense rain storms. Because we couldn’t shut our electric-powered garage door and we needed to keep an eye on our sump pump to make sure rain water didn’t seep into our basement, we decided to stay home until the power came back on. Between the disappointment of not going out to dinner and the unusual situation of being without electricity, Alex was a bit unnerved. However, he coped pretty well, trying to manage his anxiety by discussing his fears and frustrations.

When he told me he was bored because the Internet, cable, and power outage meant that he couldn’t use his iPad or watch television, I reminded him that he could read instead. As he fretted about whether he could still take a bath, I assured him that we could set up our crank-powered lantern to provide light in our windowless dark bathroom. At one point he went to use the bathroom and yelled, “It’s too dark in here!” Before I could jump up and get him a flashlight, I discovered that he had already gotten a flashlight himself. As he revealed various concerns through questions (“Will the power be off for a week?” “What if the electricity is off until midnight?’), I was able to reassure him and ease his anxiety by telling him this was only temporary and that we would be all right. A few years ago, a situation like this would have sent him into a meltdown, but he handled his fears admirably, using the coping skills he has learned in behavioral therapy.

After the power returned a couple of hours later, he seemed relieved to have things back to normal, insisting that we fix all the clocks to the correct time right away. Fortunately, he knows how to reset our trickiest clocks, leaving the easier ones for me. When he overheard Ed getting frustrated about a clock that is extremely difficult to reset, Alex showed good problem-solving skills, suggesting, “Just wait until midnight, unplug it, and plug it back in.” Not only has he learned ways to cope with frustrating situations, but he has also developed methods he can share with other people who are frustrated. Now that is real progress, and we are delighted with how well he currently copes in a variety of situations. We know that God is helping Alex overcome the obstacles of autism, especially his anxiety, and we are truly grateful for consolation that makes his life, and therefore ours, easier and better.

“When anxiety was great within me, Your consolation brought me joy.” Psalm 94:19

Sunday, July 24, 2016

Protecting Adults with Autism


The recent tragic killings of police officers in Dallas and Baton Rouge have understandably put communities on edge, fearing for the lives of innocent citizens and those officers who willingly serve and protect them. Last week, a policeman in Miami, Florida, shot and wounded an unarmed man, Charles Kinsey. While some media reports are touting this incident as an example of excessive force by the police and/or racial tension because Mr. Kinsey, a black man, fully cooperated with the police orders, further details reveal another cause of this unfortunate incident: autism.
According to news reports [To read the NBC News report about this incident, please click here.], Charles Kinsey works as a behavioral therapist for a group home in Miami. When a young man with autism wandered from the group home, Mr. Kinsey went searching for him and found him holding a toy truck. Apparently, someone called the police, and confusion about the situation––specifically, the 911 caller indicated that someone had a gun––led the police to view the man with autism as a threat, putting them on high alert.
In the video filmed by a witness to the event, Mr. Kinsey can be seen lying on the ground with his hands in the air, fully cooperating with the police. In addition, he keeps explaining to the police that the other man sitting next to him is not armed and only has a toy truck in his hands. Moreover, he keeps trying to get the man with autism to cooperate with the police, repeatedly telling him to lie on his stomach, but the young man keeps screaming at him, “Shut up!” Mr. Kinsey also identifies himself as “a behavior tech at the group home” to the police as he tries to calm and protect his client, who is clearly agitated.
Responding to this incident, the National Autism Association issued a statement praising Mr. Kinsey for his valiant attempts to help the young man with autism. In addition, this statement [which can be viewed online here] explains some of the behaviors the young man displays that are common in autism. Specifically, they note elopement, wandering away from the group home; echolalia, verbally repeating something over and over; and stimming, engaging in calming behavior, such as rocking back and forth. They also note the inability to respond to verbal commands. All of these common behaviors in autism would come across as belligerence or defiance or perhaps mental illness to someone who is not aware of how people with autism might behave, especially in a crisis.
After assessing the situation, the officer intended to shoot the man with autism, thinking that he was a threat to Mr. Kinsey, but accidentally shot the caregiver instead. According to the president of the police association in Dade County, “In fearing for Mr. Kinsey’s life, the officer discharged his firearm trying to save Mr. Kinsey’s life, and he missed.” As an autism parent, what bothers me even more than the shooting of an innocent man who was trying desperately to help his client with autism is that the police were actually trying to shoot a young man with autism, viewing him as a credible danger.
The officer who wounded Mr. Kinsey explained his intentions: “I took this job to save lives and help people. I did what I had to do in a split second to accomplish that and hate to hear others paint me as something that I’m not.” I truly believe that the officer was attempting to protect Mr. Kinsey and any others whom he believed were endangered by the man with autism. However, as a parent of a young man with autism, I worry about how my son might act in a crisis and how his life might be in danger if his stereotypical autism behaviors were misinterpreted.
As the National Autism Association points out in their response to this incident, more training of police officers is needed to help them respond to and interact with people who have autism. With the increasing rates of autism, police officers are more likely to encounter adults with autism, especially those who have wandering tendencies. If police officers do not recognize typical autistic behaviors, they may misconstrue these actions as disobedience or threats. Consequently, the National Autism Association offers free resources [Please click here for these resources.] for first responders to create greater awareness and to help them protect people with autism.
While the shooting in Miami this past week was quite unfortunate, the outcome could have been even worse, had the shots met their intended target, an upset young man with autism. As parents raising adults with autism, we must emphasize to our children the need to cooperate with authorities, especially in a crisis situation. Moreover, we must help those first responders who may encounter our adult children recognize their unusual behaviors as coping mechanisms and not intentional threats to others. After all, we won’t always be around to protect our adult children with autism, and we will need those who have devoted their lives to helping others to protect our children when we cannot. In the meantime, we pray that God will watch over our children and provide divine protection to keep them safe from harm.
“For He will order His angels to protect you wherever you go.” Psalm 91:11

Sunday, July 17, 2016

Sights and Sounds

 
A few weeks ago, we took Alex to a concert in our downtown park, where he enjoyed the upbeat popular music the band played. Even though Alex has sound sensitivity, he never seemed to be bothered by the volume of the music, which was not uncomfortably loud. Near the end of the concert, when it began to get dark, they turned on the stage lights that began to flash various colors. Suddenly, Alex seemed a bit distressed temporarily and put his fingers in his ears, as if he were overwhelmed by sound, even though the volume had not changed. When we asked him if the music was too loud, he told us it wasn’t, and after a few moments with his fingers in his ears, he relaxed and took his fingers out of his ears, ready to enjoy the music again, assuring us that he wanted to stay for the rest of the concert. Clearly, he had a sensory overload and used coping skills to manage it successfully. However, why did he plug his ears for a visual assault on his senses?

On the Fourth of July, we took him to see the local fireworks display. A couple of years ago, we discovered a place where we could park and watch the fireworks from our car that was away from the crowds and noise and where we could leave quickly should Alex become overwhelmed by the sights and sounds. However, Alex loves fireworks displays, and we have never had to leave early because he deals with the bright lights and loud noises amazingly well. At one point in the show, a firework display had a sequence of very bright flashing lights yet made no sound as they shone, and Alex once again put his fingers in his ears. Perhaps he was anticipating the loud boom he thought they were ready to make, but I think there was another reason for plugging his ears. Concerned that he was overwhelmed, we offered to leave, but he assured us that he was all right and wanted to stay for the entire fireworks show. After a few seconds of plugging his ears, he adapted and enjoyed the rest of the fireworks.

A couple of days ago, Alex and I were watching a new television show called Greatest Hits in which singers and bands perform their hit songs from the ‘80’s and early 90’s. Even though these songs are before his time (as he always reminds us that he doesn’t remember them), he thoroughly enjoys these old tunes. Because Alex’s hearing is acute, we usually keep our television volume turned down fairly low so that it doesn’t bother him. Near the end of the show as one of the bands was performing, suddenly the stage lights came on and began flashing brightly. Knowing that the volume had not changed, I watched him to see how he would react to the flashing lights, and he put his fingers in his ears briefly. Of course, he could have left the room or turned off the television, but he wanted to watch the show, so he used his coping mechanism of putting his fingers in his ears for a few moments, knowing this sound blocking mechanism allows him to continue.

Curious as to why Alex blocks sound when his senses are assaulted visually, I began looking for some research. Most people would close their eyes if flashing lights bother them, but blocking sound seems to help him cope with the sensory overload. In my search, I found a recent online article in Spectrum entitled “Sight may mix with sound in autism brains,” written by Jessica Wright and published May 13, 2016. [To read this article, please click here.] This interesting article summarizes findings presented at the 2016 International Meeting for Autism Research in Baltimore and published in May in the journal Autism Research.

Using magnetic resonance imaging, the researchers tested children and teenagers who were typical and those who have autism to see where in the brain they processed visual and auditory stimuli. For visual tasks, the children were shown pictures of rectangles and dots and were told to indicate the position of the dot as high or low. For auditory tasks, they listened to tones and were to indicate whether the pitch of the sound was high or low. While both groups––those with autism and those with typical development––performed well on correctly identifying the positions and tones, the MRI indicated different processing in the brains of the children with autism.

Specifically, both groups scored in the mid-90 percentage range on identifying the position of the dot as low or high; however, the typical group scored slightly better (93%) than those with autism (83%) on identifying low and high tones. The researchers also noted that the MRI indicated that the visual cortex of the typical children shut down when they were engaged in the listening task. However, when listening to the sounds, the visual cortex became more active in the brains of the children with autism. This may account for the sensory overload children with autism often exhibit; their brains are taking in both visual and auditory stimuli instead of shutting out what they don’t need at the time.

These researchers suggests that children with autism may be using visual areas of the brain to process sound, perhaps to compensate for weaknesses in the brain areas that process sound. Typically, people with autism have strong visual skills, allowing them to create pictures in their minds easily. Alex often tells use that he can visualize words and numbers in his mind, which makes mentally calculating complicated math problems easy for him. On the other hand, there seems to be confusion for him between the visual and auditory stimuli, as evidenced by his attempts to block sounds when flashing lights overwhelm his visual field. Maybe he is experiencing a “sensory crossover” described in this research, but instead of seeing sound, he is hearing sights.

If, indeed, his brain processes stimuli differently, he has learned a coping skill to deal with overwhelming situations. Perhaps by blocking the sound briefly, he is able to focus on the visual and then add the sound when he is ready. As a primarily auditory learner, I know that I sometimes have to close my eyes to focus upon what I’m hearing, to block out the visual that distracts me so that I may concentrate on listening. Alex seems to be doing a similar technique, yet because his brain may work differently, he blocks sound instead of sight, which is his strongest modality for learning. Whatever the reason, I’m pleased that he has developed a method to help him adjust when he is dealing with a variety of sights and sounds so that his brain can handle all there is to see and hear and so that he can enjoy all life has to offer.

“Ears to hear and eyes to see––both are gifts from the Lord.” Proverbs 20:12

Sunday, July 10, 2016

Alex's Game Shows

 
Ever since he was a little boy. Alex has been a big fan of television game shows, and he has continued his love for these programs over the years. In fact, we make sure nothing interferes with his watching The Price Is Right or Jeopardy or Wheel of Fortune every day. We keep his schedule between 10:00-11:00 A.M.,  3:30-4:00 P.M., and 6:30-7:00 P.M. free, so that he can watch his beloved game shows. In the event something comes up during these sacred times, we must appease him by promising to tape his shows on the DVR so that he can watch them later.

Apparently, Alex is not the only person who enjoys watching television game shows, as evidenced by the revival of the old game shows Match Game, The $10,000 Pyramid, To Tell the Truth, and Family Feud. These prime time shows with new hosts and current celebrities have found new popularity with audiences who enjoy watching the friendly competition. Of course, Alex is now glued to Sunday night television, delighted to watch an evening of new game shows.

In many ways, our daily life is a game show in which Alex is the host and I am the “lucky” contestant chosen to answer unusual questions to satisfy him. Fortunately, he has taught me the rules well so that I am usually a successful participant. However, to the average observer, our games appear to be a series of strange questions and answers, yet because Alex enjoys our repartee, I am a willing partner in his inquiries. Here are just a few of the games we play.

Name That Crumb­­––Alex brings me a morsel of food he has found from who knows where (the floor, the table, his teeth?) and asks me to identify what it is. Sometimes the answer is obvious, and I can confidently tell him the answer. Other times, I have no clue because the crumb has been chewed or become petrified, or it is so small I would need a microscope to properly identify it. Nonetheless, to satisfy my inquiring host, I confidently tell him what it is, convincing him that I do know what “treasure” he has brought me.

Let’s Make a Schedule––For some reason, Alex believes that I know everything (perhaps because of my success at Name That Crumb), so he thinks I am a human TV Guide who knows when every television show airs. Recently, he has begun asking me when various sporting events will be on tv and on what channel. Unlike Name that Crumb, I can’t fake answers because he will check my accuracy to make sure I tell him the truth. Why he doesn’t just do this in the first place is beyond me, other than I think he enjoys seeing the panic on my face when I don’t immediately know what channel the NASCAR race is on.

To Not Tell the Truth––Although Alex trusts me to tell him the truth, we play a game in which he doesn’t tell the truth, and he probably knows that I’m onto his deception. In this game, he comes running to tell me that he’s going to throw up and needs sugar. This game originated from my giving him a little bit of sugar when he has hiccups, and he has generalized the value of this cure to vomiting, too. Knowing how much I hate cleaning up vomit, he realizes that just saying that he will throw up motivates me to move quickly to fulfill his “needs.” Being the gullible one I am, I jump up and give him a little sugar. He wins this round.

Catch Game––Another game Alex plays to get me moving fast is the Catch Game in which he acts as though he has been searching for days for some beloved and necessary belonging that he has misplaced. After questioning him about where he might have left the missing objects and having him convince me that he has searched the places I have mentioned, I usually find the “prize” in one of those locations he claims he has already checked. Once I locate the object and present it to him, we are both winners of this game.

Family Confused––Not all of our games involve running around the house; some simply involve banter between the two of us. In Family Confused, I must explain to him that his notions about family members are incorrect. For example, anytime he hears a woman with a high-pitched voice speaking, he is convinced that my sister is nearby. “Is that Aunt Tammy?” he will ask hopefully. We will then explain to him that the person he hears is not his beloved aunt but someone who just sounds like her. Another area of confusion for him is figuring out the identities of my dad and my brother, whose voices sound alike to him. He will repeatedly ask us, “Is Uncle Freddy Grandpa?” We then have to explain to him that they are two separate people, just like he and his dad are. Even though we have gone over this with him many times, he still likes to have this conversation over and over.

To Tell the Temperature––The value of repetition is also involved in this game in which Alex hears something about the city of Phoenix, which makes him always remark excitedly, “It gets hot in Phoenix!” We will agree with his assertion, and then he will ask a question whose answer he already knows: “How hot does it get in Phoenix?” We will then tell him that it gets about 100 degrees. Our imprecise answer amuses him because he can then correct us by saying, “No, between 105 and 110 degrees EXACTLY!”

The 9999 Pyramid––Alex’s precision is a key factor in this game, as well. He studies anything with numbers but has a special fascination for odometers on cars and receipts from stores and restaurants. He will peruse receipts intently, noting the number of digits, and ask us, “What happens after 9999?” We tell him that they would either add a digit and go to 10,000 or start over at 1. He will mull this over for a while before determining what response works best.

Meal of Fortune––This game allows Alex to combine two of his favorite things in the whole world: food and numbers. Before eating a meal, he assesses the various foods before him and begins asking a series of questions. “Can you count meat?” “Can you count strawberries?” “Can you count potatoes?” As we assure him that all of these solid foods are distinct and that he can count each bite of them, he will then shift his focus. “Can you count Gatorade?” Can you count salad dressing?” “Can you count ketchup?” As we explain to him, that those items are not countable because they are liquid, he can then start eating and counting the solid foods in a game he can continue independently.

The Pace Is Right––In another game that usually combines numbers and food, Alex wants to assess how many days a particular item will last before we need to go to the store and buy more. The object of his concern is usually a particular favorite of his at the time: Welch’s sparkling grape juice, dill pickles, black olives, cookies. Currently, he feels the need to check on his orange Gatorade supply and the number of Italian sausages we have in the refrigerator. Once he is reassured that we have plenty, he is satisfied that our inventory is sufficient to meet his needs. In a similar game, he wants to know how many days of leftovers we have. For most people, leftovers are not something to celebrate, but for Alex, they mean a few days of tasty lunches, and he hopes that we have more than one day of leftovers for him to eat. Recently, Alex has expanded his Pace Is Right to checking on how much toilet paper is left on the roll in the bathroom. Because toilet paper rolls have gotten smaller and smaller over the years, Alex is concerned that he may run out at an inopportune time. My role in this game is to estimate how many days are left on a t.p. roll before it will need to be changed. Once I have given my final answer, Alex checks the progress of the roll to make sure I have told him accurately. Fortunately, I am really good at figuring out how much toilet paper we use, so he trusts my assessment, making us both winners at this game.

While many of these games Alex and I play stem from his OCD needs to organize details, I suspect that he also enjoys the conversations we have about topics he likes, such as numbers and food. Even though going through the same dialogue over and over could be tedious, I’m pleased that he wants to share information and that he has the verbal skills to engage in banter. I’m just hoping I don’t have to explain that whole “spay or neuter your pet” line with him anytime soon.

“But ask those who have been around, and they will tell you the truth.” Job 21:29

Sunday, July 3, 2016

Buyer Beware

 
Recently several “suggested posts” have been showing up in my Facebook news feed regarding new treatments for autism. Intrigued by their enthusiastic sales pitches, I have been checking out these “sponsored” advertisements and found them to be full of empty promises and false hope. After more than twenty years of doing autism research, I can recognize unscrupulous charlatans who prey upon the hopes of autism parents willing to do anything to help their beloved children. However, I wonder how many parents buy into these methods, supplements, and treatments in earnest efforts to make their children better, wasting their time and money and even potentially endangering their children’s health.

In evaluating the claims of these advertisements for autism miracle cures, parents should watch for the following red flags warning them to steer clear of these promoters. First, these new methods usually have some secrecy surrounding them. Magical supplements have “proprietary blends” of ingredients that could be worthless or even harmful. In addition, parents should be wary of vague claims. If, indeed, this treatment works, the advertiser should proudly tell what it does. Some of these ads attempt to boost the value by using jargon and vague statements. Perhaps they use loaded language because those claiming expertise in the field really have none. Finally, the obvious clue that should make parents skeptical is that these treatments are ridiculously expensive. In fact, some of them are shamefully expensive, to the point they hide the cost of the treatment until after they have made all of their sales pitches. Certainly, parents are willing to spend any amount of money to make their children with autism better, but these charlatans prey upon desperate parents in order to make money. To me, that is criminal.

Because of quackery that exists in the treatment of autism, some people are quick to dismiss any kinds of alternative therapies that may benefit some children with autism. For example, I have read articles in the mainstream media that describe “what doesn’t work” and include among the so-called worthless interventions special diets and chelation. (These same types of articles also firmly state that there is absolutely no connection between autism and vaccinations. I disagree.) Not only are special diets and chelation deemed unhelpful in these articles, but these treatment methods are also described as “dangerous” to children with autism.

Of course, parents need to do research and consult with reputable medical professionals before trying alternative therapies. We were fortunate to have a medical doctor with extensive knowledge of nutrition who took a holistic approach to treating Alex. In addition, we did reliable testing before jumping into uncharted waters, and we only tried one new thing at a time so that we could discern the positive and negative effects of the therapy. When Alex was seven years old, we had him tested for food allergies, and after discovering that he, like many children with autism, had sensitivities to caseins found in milk products and glutens found in grains, we placed him on a gluten-free and casein-free diet, which he still maintains today. I believe that his cooperative adherence to this special diet has prevented him from having digestive issues that many people with autism suffer.

When Alex was nine years old, we had him take a heavy metals challenge test, which only required urine samples, and the results showed he had toxic metals in his system, something fairly common in children with autism. We knew that keeping arsenic, lead, mercury, and aluminum in his body was not healthy, and under the direction of his doctor, who had expertise in chelation therapy, we treated him for three years with a safe protocol to rid his body of these toxins. Alex’s doctor prescribed DMSA pills containing sulfur to bind with the toxic metals that removed them from his system. While special diets and chelation are not appropriate for all children with autism, we believe that testing indicated these methods were necessary for Alex to improve his health.

While the GFCF diet and chelation therapy worked for Alex, some other methods we have tried have not been as successful. For example, some children with autism benefit from taking fish oil Omega 3 supplements. When we have tried these supplements with Alex, he has had negative side effects, such as agitation, hyperactivity, and insomnia. Consequently, we felt these supplements did not work for him. In addition, we tried giving him vitamin A in the form of cod liver oil capsules along with the prescription medication urecholine after hearing that this therapy had been successful with other children. However, Alex did not show any improvement with this method, and we discontinued this treatment since he did not respond favorably, as other children did. Because children with autism have varied nutritional needs, some respond to certain therapies, while others do not. As Alex’s doctor frequently reminded us, so long as a treatment is not harmful, it is always worth trying.

When considering therapy methods, parents should also investigate less expensive and more convenient yet equally effective alternatives. For example, I researched Fast Forward, a computer-based therapy designed to improve children’s receptive language skills, which were a weakness for Alex. However, at the time, no local providers of this therapy existed, which meant traveling in addition to the great expense of the therapy itself. After more research, I found Earobics, a similar program that parents could purchase for home use at a very reasonable price. Believing that Alex could benefit from this lesser expensive program we could use at home, we tried Earobics and found this games-based computer program did indeed improve his receptive language skills.

Similarly, after reading about auditory integration therapy (AIT) and how it addressed hypersensitive hearing and sensory processing issues that Alex had, I was unable to find any therapists nearby who offered this method. In addition, for many parents AIT is cost-prohibitive. More research led me to the EASe disc, a CD parents can purchase for home use offering many of the benefits of AIT along with the convenience of doing the therapy in the comforts of home. For Alex, the EASe disc enabled him to overcome sound sensitivities that upset him, and now he is rarely bothered by loud noise. Unlike some people with autism who must wear earplugs or noise-cancelling headphones in public places to deal with overwhelming sounds, Alex can go to sporting events and concerts without earplugs or headphones, thankfully unfazed by the noise.

Although we found benefits to some alternative therapies, others did not work for Alex, and the successful therapies we found may not work for others. Parents need to do their research to find ways to help their children without putting them in danger and without spending ridiculous amounts of money on unproven methods. After reading through yet another Facebook ad claiming, “Our autism therapy works. Period,” I found the comments people made in response to this bold statement interesting, questioning the validity of the treatment. As one person wisely noted, “If there is ever a truly effective treatment for autism, it will hopefully be shouted from the rooftops and have folks lining up for it. I don’t think you would have to stumble on it via Facebook.” I totally agree. In the meantime, parents like me keep searching for ways to make our children with autism healthier, happier, and more independent. When I find something that works, I will be shouting it from the rooftops (or at least sharing it from my blog), hoping to help all of our children with autism be their best.

“And many false prophets will appear and will deceive many people.” Matthew 24:11