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

Sunday, June 26, 2016

Acceptance vs. Assurance

 
acceptance––willingness to tolerate a difficult or unpleasant situation

assurance––a positive declaration intended to give confidence; a promise

This week I read an upbeat article in a popular magazine about a family raising a daughter with autism that offered good insights into life with autism. I found myself agreeing with most of what the parents were quoted as saying until the last paragraph. The author states that the parents “grow weary of what they believe are common misconceptions surrounding autism, including the role of vaccines, which they don’t believe are the culprit.” If, indeed, the parents truly feel this way, they seem to be accepting a popular stance the media presents on a controversial issue. However, as parents we must not grow weary and must continue to seek all potential causes of autism if we have any hope of helping our kids get better.

Similarly, I have read essays written by adults who say they have autism and by parents of children with autism asserting that trying to cure children of autism is wrong and that parents should accept their children as they are. Some will support this belief by stating, “This is how God made them,” suggesting that trying to help the children with autism is going against God’s will. Isn’t the point of life trying to become the best people we can be? I believe that our role as parents is to help our children develop their potential so that they can live a fulfilled life, instead of tolerating a life that is more difficult than it needs to be.

Perhaps some parents have not endured the struggles we have gone through with autism and simply don’t know why acceptance is not acceptable. Having dealt with a child whose extreme anxiety––which often accompanies autism––led him to become a danger to himself and others with his aggressive panic attacks, we know that parents must constantly seek answers to the cause of autism and search for the best treatment methods. In our situation we needed to make major changes because of Alex’s fluctuating hormone levels in his teens, bouts of candida yeast overgrowth in his digestive system that agitated him, and a need to switch SSRI medications to address his OCD when Prozac stopped working for him. Instead of just believing that God made Alex this way and tolerating a terrible situation, we believed that God would help us weather the storms and show us what we needed to do to help Alex overcome these obstacles. We chose assurance­––God’s promise of faithfulness––over acceptance, and God fulfilled his promise by leading us to the professionals who knew how to help us make Alex better.

This week we took Alex to two community events in our local downtown park: a movie and a concert, both of which he thoroughly enjoyed. A few years ago, we would have never dreamed that he could have sat happily and calmly in the midst of crowds and activity for two hours. Even though we believed he would get better through therapy and treatment, his progress has surpassed our expectations and allowed God to show his goodness to us. In addition, we have begun to wean him off one of his medications for anxiety under the direction of his psychiatric nurse practitioner because he is doing so well. While we had some concerns about how he would react to this change, thankfully, he has adapted amazingly well, showing no negative side effects to the lower doses of this medication.

As we listened to the music at the concert in the park, an image from the lyrics to one of the songs resonated with me. Although I can’t remember the exact words, the gist was that we are all waiting to be diamonds. Curious about how diamonds are actually made, I found an article online at Live Science that summarized the process: “bury carbon dioxide 100 miles into Earth, heat to 2200 degrees Fahrenheit, squeeze under pressure of 725,000 pounds per square inch, and quickly rush toward Earth’s surface to cool.” Essentially, what’s needed to create something beautiful and strong is to take something common and ordinary and subject it to extreme heat and pressure. Certainly, autism has created figurative heat and pressure that have tested us and shaped Alex, who is well on his way to becoming a diamond. As we watch him try to convey an idea through words despite his difficulties in generating speech or to complete a simple task with hands that have not yet mastered fine motor skills, we are amazed at the patience and tenacity he has developed over the years. He never gives up, knowing he will eventually complete what he has started, reminding and encouraging us to never give up, knowing with complete assurance that God will complete what He has started through His good works in Alex.

“Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.” Hebrews 11:1

Sunday, June 19, 2016

Alex's Dad

 
Raising a child is no easy task, and being a parent of a child with special needs adds a whole new set of unimagined responsibilities. After more than two dozen years of watching Ed rise to the challenges of raising our son with autism, I am amazed by the patience he has developed, the strength and calm he exhibits that make me stronger and calmer, and the unabashed pride he takes in even the seemingly smallest of Alex’s achievements. Through the good and the bad and even the horrible times, Ed’s devotion to Alex and me has remained constant and has even become stronger with time, and for that, I am truly grateful.

I’ve heard it said that the best thing a father can do for his children is to love their mother. Alex witnesses every day how much his dad loves me through his thoughtfulness, respect, and affection. Moreover, Ed also expects Alex to treat me the same way, often reminding him, “Did you tell Mommy thank you? Well, tell her!”

In addition to mentoring Alex in how to treat others, Ed has also held Alex to high expectations. While my natural tendency would be to mollycoddle Alex because autism makes simple tasks difficult for him, Ed knows that he needs to learn how to do things on his own. For example, if Alex needs to wipe his face after eating, I grab a napkin and do it for him. Ed, on the other hand, patiently gives Alex directions, telling him to pick up the napkin and instructing where he needs to wipe his face and praising him for doing a good job. Similarly, he expects Alex to pick up after himself, whereas I would just come along behind him and put his things away for him. However, I won’t always be around to wipe Alex’s face or to pick up his belongings for him, so it’s a good thing Ed teaches him to be more independent.

Some of the most precious moments of my life are when I watch the two of them together without their being aware of my presence. Looking out the kitchen window, I have seen Ed patiently teaching Alex in the backyard how to throw or kick or catch a ball, encouraging him, no matter how many times Alex had to try before he could do it himself. When he finally mastered the skill, his face lit up, and he looked for Ed’s approval; his dad’s face matched his own, beaming with happiness and pride, as did mine watching from the window.

Sometimes I eavesdrop on their conversations and find the give and take amusing. Since speaking is so difficult for Alex, we hang on his every word, even when we have to ask him to repeat or clarify what he has said. I know that Ed savors his conversations with Alex because for many years we weren’t sure if he would ever be able to say more than a few words at a time. As they chat about baseball and jazz and the stock market and other interests they share, they thoroughly enjoy each other’s company and appreciate what the other has to say.

Because children never fully appreciate all their parents do for them until they have children of their own, Alex may never realize all of the things his dad does for him. From being Alex’s personal chauffeur to cutting up his food into bite-sized pieces to helping him get dressed and all the other tasks most twenty-four-year-old young men can do without their father’s help, Ed unfailing takes care of Alex and never complains.

By lovingly caring for Alex, Ed not only takes care of Alex’s daily needs, but he has also developed Alex’s faith in God. Knowing that he can always depend upon his earthly father, Alex has no doubt that he can completely trust his heavenly Father. In fact, Alex’s perception of God as being smart and funny probably comes from his attributing these qualities to his dad. However, he rates Ed as being in the high ninety percentages in these two areas, but he gives God 100% rankings in the intelligence and humor categories, noting that only God is perfect. Indeed, Alex is right about God’s wisdom because God knew exactly what kind of father Alex would need to guide him on the less traveled road of autism and gave him Ed. How blessed I am to be the wife and mother to two such extraordinary men!

“The father of godly children has cause for joy. What a pleasure to have children who are wise.” Proverbs 23:24

Sunday, June 12, 2016

Roll with the Changes

 
“Keep on rollin’; keep on rollin’. Oh, you got to learn to roll with the changes.”––"Roll with the Changes" by Kevin Cronin of REO Speedwagon

Commonly, people with autism have strong preferences for sameness and routines, which makes them resistant to change. For example, Alex insists on having a bath every night at exactly 6:00, and rarely can we persuade him to move this daily event to another time unless a much better alternative event convinces him to alter his sacred schedule. However, we have noted that over time, he has become increasingly flexible and less anxious about changes in his routine. Indeed, he is learning "to roll with the changes."

This week was my first week of summer vacation from teaching, which could have thrown Alex for a loop since he’s used to just being with his dad in the mornings while I’m at work. As it turned out, I was gone for parts of four mornings with two meetings and two breakfast outings with friends. This probably helped Alex ease into the transition of our summer schedule. Also, I try to help him deal with any anxiety by always leaving him a note telling him where I’ve gone and when I will return, which seems to comfort any worries he may have about why I’m gone and when I will be home. We’ll see how he responds next week when I’ll be home because my morning schedule isn’t as busy.

On Monday, Alex had his routine six-month appointment with the psychiatric nurse practitioner who prescribes his medications for anxiety. We were pleased to discover that she deemed the results of all of his blood tests “perfect” because they indicate that he is in excellent health and that the medications are not having any negative side effects. In addition, we were delighted that his behavior was fantastic during the appointment, calm and pleasant while he answered all of her questions. Of course, Alex was pleased that her schedule was running right on time so that he didn’t have to sit in the waiting room.

After we discussed his progress with her, she raised the issue I knew was coming––reducing his medications. As she pointed out, we can say that because things are going well, we shouldn’t rock the boat and should keep the medications the same. On the other hand, she noted, because things are going well, this may be a good time to reduce his medications. In a twist of roles, Ed, who is usually more receptive to change than I am, commented that we probably shouldn’t make any changes because Alex is doing well. Although I completely understand his logic, my mother’s instinct believes that we need to see if Alex can cope with less medication, and so with some trepidation we will try weaning him off one of his medications this summer and pray that we are doing the right thing.

On Tuesday, Alex met with his behavioral therapist for his regular weekly session, which went very well. Although she often doesn’t arrive at the scheduled time because of her busy schedule that requires travel through heavy traffic between two counties, she was ten minutes early on Tuesday. While that could have thrown Alex for a loop, he adjusted nicely to her early arrival and had a great session with her. Similarly, he showed flexibility on Wednesday when his peer companion who spends every Wednesday afternoon with him had to cancel at the last minute because she wasn’t feeling well. With two changes to his beloved routine in two days––one minor and one major––he still managed to be upbeat and calm.

On Thursday, Alex had his weekly session with his music therapist who is always punctual, faithfully arriving at his scheduled time every week. This week, he arrived early, and Alex again dealt with this change very well. In fact, his music therapist described the session as “fantastic” and noted that this was the second week in a row where Alex had done especially well with him. Of course, we were pleased by this positive report. In addition, he handled nicely a change in our dinner routine because Ed and my dad were attending a dinner reception for VU basketball season ticket holders, so Alex, my mom, and I went out to a restaurant for dinner. Alex seemed to enjoy himself thoroughly, and we remarked how much we enjoy taking him out to dinner because he behaves so well.

Friday threw Alex another curve ball, however, when his behavioral therapist had to cancel our planned recreational therapy session due to a family emergency. Even though Alex had been looking forward to going out to lunch at Subway with her and me, he didn’t seem terribly upset that our lunch plans had been altered. Later that evening, we discovered that our central air conditioning had broken, yet Alex continued his calm demeanor. As the temperatures rose into the 90’s yesterday, he never complained about the heat and only seemed amused to watch the thermometer rise in his upstairs bedroom, commenting that the it had never been that hot before in his entire life.

Because we have to wait until next week for the air conditioner to be repaired and because our bedrooms upstairs were too warm, even with windows opened and fans turned on, we decided to sleep in the basement, where it was much cooler. As we set up the pull-out bed in the couch for Ed and me and put Alex in basement bedroom twin bed, he seemed to view the experience as a grand adventure. Although I was concerned about how he would sleep in a different bed, he once again showed his flexibility, sleeping soundly in a new spot.

While Alex, like many people––including me––prefers the comfort of familiar routines, he is learning to accept and perhaps even embrace changes that occur, even when he doesn’t have time to prepare for them. This increased flexibility makes our lives easier because we don’t have to worry about his anxiety escalating. Moreover, he is realizing that life doesn’t always go as planned, and learning to roll with the changes will make his life more content. This week with all its unexpected alterations taught Alex valuable lessons and reminded us just how far he has come, and we continue to be thankful for the progress he has made.

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

Sunday, June 5, 2016

Summer Safety

 
Although summer doesn’t officially begin until later this month (June 20th at 7:34 P.M. Central Daylight Time exactly, as Alex would add), for many of us summer starts as soon as the school year ends. After finishing up teaching my seventh grade English classes on Friday, essentially my summer has begun, other than having to spend tomorrow morning finishing up paperwork, submitting grades, and completing end-of-the-year tasks. Since Ed completed his spring semester last month, Alex has been eagerly awaiting my school year to end because summer officially arrives when both of us are home to spend time with Alex as a family.

In anticipation of this first week of our summer, Alex has been planning what he’d like to do with this special family time that we are blessed to have because we are teachers. Usually, he makes a specific list of places to go and things to do. This year, however, he seems more spontaneous and open to suggestions about summer activities. In fact, when asked what he’d like to do this summer, he responded, “Put more miles on Daddy’s car.” He doesn’t care where we go or what we do, just so long as we go lots of places and make that odometer move forward. That flexibility shows us progress on his part.

While summer brings good weather, vacations, family gatherings, and a less structured schedule––all of which most people treasure––summer also brings greater incidences of wandering in people with autism for all of those reasons. According to statistics provided by the National Autism Association, 49% of children and adults with autism wander away from places of safety and put themselves in dangerous situations, often fleeing toward bodies of water or swimming pools, busy roads, or train tracks. Every year many of these people with autism die from drowning or being hit by cars or trains.

While we are fortunate that Alex does not seem to be one of the wanderers, we still watch him like a hawk and have put safety precautions in place, such as having locks he cannot open and having him wear a medical identification bracelet in case he would be separated from us in a crowded place. Even though he can say his name, our names, his address and phone number, as well as my parents’ names, address, and phone number, his poor articulation skills and likelihood to panic if he were lost would make understanding him difficult. Hence, we have him wear the bracelet with key identifying information that he may not be able to tell in a crisis.

Why do people with autism wander and put themselves in danger? The National Autism Association offers potential reasons.

In addition, the National Autism Association offers many helpful tips to keep children with autism safe. [To view their webpage with safety guidelines, please click here.] Specifically, they focus upon prevention, education, and response. To prevent wandering they recommend the following:

––home safeguards, such as locks and fences to keep children from wandering from home;

––identification bracelets or tags;

––community awareness to alert those who might encounter the child and to teach how to interact with them;

––and hyper vigilance to make sure the child is closely supervised, especially in unfamiliar situations.

For education, the NAA recommends identifying triggers that may cause a child to elope, such as loud noises, and teaching them ways to cope with stresses other than running away. In addition they recommend providing swimming lessons to keep them safe around water and using social stories to teach them about safety.

If a person with autism wanders, the NAA recommends immediate response, including calling 911 right away and searching dangerous areas first, including water, railroad tracks, and traffic. Since people with autism are drawn to these places that pose imminent danger to them, family and first responders should always search these areas immediately. In addition, the NAA offers the following essential and helpful guidelines for law enforcement officers when dealing with a case of a person with autism who has wandered.


Although summertime usually brings relaxation for most families, for families with autism, summertime means increased vigilance to keep our children safe. Thanks to the efforts of the National Autism Association, helpful tips for keeping our kids from wandering and for dealing with the crisis of wandering remind us never to let down our guard when it comes to protecting them from harm. Hopefully, awareness of this crucial issue can prevent more tragedies from happening when people with autism wander. Of course, as parents, we also pray that God will always keep our children safe.

“The Lord is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety.” Psalm 18:2

Sunday, May 29, 2016

Wonderful Joy Ahead

 
After writing this blog for nearly six years, each week I wonder when I’m going to run out of ideas. Some weeks, the inspiration is clear as a bell: Alex does something interesting or reminds me of something important, and other weeks I find articles or essays that inspire me. Either way, I know what I want to write. Other weeks, I feel like a contestant on the Food Network Channel competition show Chopped during the mystery basket round. For that challenge, the chefs must prepare a dish using four items found in their mystery baskets. Usually three of the items seem to work together, but the fourth food item throws them for a loop, and they must figure out how to make it work with the other three. For example, they might be given chicken, rice, and soy sauce, and the odd item is chocolate syrup. Somehow, the successful chefs figure out how to make all four items blend together in harmony.

This week, I had a mystery basket of my own of ideas for my blog, and I need to emphasize that I know what I’m supposed to write because these ideas roll over and over in my mind and are the first things I think about when I awaken in the morning. For this week's blog entry, I was moved to write about an inspirational blog entry by another special needs mom, a scripture I saw on Instagram, Alex’s experience during a lab test this week, and the Facebook viral video of a mom wearing the Star Wars' Chewbacca mask. Let’s see if I can pull these four items together.

Yesterday, I read a heartfelt blog entry written by special needs mom Lindsay Franks entitled “When God’s Plan Doesn’t Seem Wonderful.” [To read this essay, please click here.] As she describes disappointments and struggles that all people face, she notes, “my own sufferings have shown me the sufferings of others.” From my own experience, I know this is true. I have gone from being a sympathetic person to an empathetic one. She goes on to say that we try to face these obstacles with a positive attitude: “And we slap on happy faces and pretend that all is good.” However, I think that over time, this optimistic attitude becomes real, and we no longer need to pretend because we know that all is well, in spite of the storms. Certainly, we may face setbacks and discouragement, but the joy is genuine.

Noting the frustration we feel when these obstacles are ongoing, Lindsay Franks asks, “What happens when you cry out for Him to take a burden away and He doesn’t?” She explains that these trials build our character and shape our faith, and she notes that God gives us grace to deal with problems that could overwhelm us. In addition, she contrasts “earthly sufferings” with “future glory (heaven),” reminding us that these struggles are only part of this brief time on earth and that we will understand God’s plan when we begin our eternal lives in heaven. Of course, this is where we must fully trust God.

I confess that I have always believed Alex will be healed of autism some day. While I know for certain that his body and mind will be healed in heaven, trusting that God will heal him here on earth, especially since all the so-called experts say that autism is a lifelong condition, requires constant fighting of doubt as well as fervent and hopeful watching for signs of improvement. You see, I have witnessed enough goodness in my own life that makes me confident God can take the autism away at any time. I hold fast to the promise of Psalm 27:13, “Yet I am confident I will see the Lord’s goodness while I am here in the land of the living.” While I look forward to heaven, I also believe that on earth greater joy comes from suffering because we know God has given us strength to overcome obstacles in life.

Yesterday, I was reminded how despite the obstacles autism creates for Alex, God has also given him remarkable strength. While it’s not fair that Alex must undergo regular blood draws to monitor the effects anxiety medication has on his body, he never gets upset by the procedures and never complains. When we asked him if he wanted to go to the lab to have blood tests last evening, he immediately said yes and happily skipped to the door. During our brief wait at the lab, he was calm and pleasant, and he was happy to see a familiar friendly lab technician who would draw five vials of blood for the tests. As she chatted with him, he answered all of her questions, and he watched as his blood ran into the test tubes. Holding his hand, I was amazed by his calmness, never flinching the entire time. She enthusiastically remarked several times how good Alex always is and told him what a great patient he is. Of course, Ed and I are pleased that he cooperates so nicely, but I also know that God has placed peace within Alex so that he doesn’t get upset by a situation that is uncomfortable to most people, even those who don’t have autism. While most would dread having a blood test, Alex isn’t bothered a bit and sees the experience as an adventure. He walked in smiling and left smiling; now that is pure joy.

Recently, a Facebook video of a woman who was delighted with her purchase of a mask featuring the Star Wars' character Chewbacca received record views and national attention. [Yes, Chewbacca mom is the chocolate syrup in the mystery basket this week.] What made so many people want to watch this woman putting on a mask? Of course, it was funny to watch a typical mom put on a mask intended for a child, especially since it made funny noises, too. However, the best thing about that video was how something so simple made her so happy. As she laughed with delight and talked about how happy she was, the viewer couldn’t help but laugh and smile with her because her unabashed joy is simply contagious. How much better life would be if everyone could find happiness in unexpected places, like she did!

Thinking about her joyful attitude, I realized that Alex is like that. He has also been blessed with a joyful spirit that allows him to be happy in spite of what autism has taken from him. Give him some shrimp to eat, some little kids’ voices to hear, a song on the radio he likes, or any other seemingly small good thing in life, and he is delighted. A smile spreads across his face, he begins to shudder with excitement, and he leans forward and puts his hands between his knees as though to keep from exploding with the genuine joy he feels. How much better life would be if everyone could find happiness in unexpected places, like Alex does!

My musings on joy this week––from Chewbacca mom to blood tests to Lindsay Franks’ essay––actually began with seeing a Bible verse I don't recall reading before. My cousin posted on Instagram a picture of a plaque her daughter had painted for her with the scripture from 1 Peter 1:6. After reading this verse in various translations, I know that seeing it was no accident; I was meant to be reminded that God, indeed, has a good plan for Alex, who seems to know already that “wonderful joy is ahead.” No wonder he is “truly glad”!

“So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while.” 1 Peter 1:6