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

Sunday, May 22, 2016

Courtesy

 
As the school year winds to a close, I have been trying to figure out what last lessons I want to teach my students in the upcoming few days I have left with them. The other day, I ran across a list Reddit compiled of courtesies that are not always practiced, which I think I will share with my classes. Posted on the website 22 Words by Abby Heugel, this list is titled “30 Things So Obvious You Should NEVER Have To Be Asked To Do Them.” [To see this list, please click here.] After running errands yesterday morning and running into all sorts of rude behavior, I realized that far too many people either have not learned these supposedly obvious lessons or have chosen to ignore them and need to be reminded of them.

Perhaps the value of these polite concepts is clearer to me because autism impairs Alex’s social skills, and we must remind him to use his manners. As an autism mom who constantly strives to make Alex a better person and as a teacher who wants to share what I’ve learned, I would like to pass along these helpful social skills. Of course, the English teacher in me needed to revise the wording and reorganize the list order from its original format, but I hope these important lessons may prove useful.

Driving and Door Do's

When driving, use the turn signal so other drivers know your intentions.

When another driver lets you in, give them the “thank you” nod or wave.

When someone holds the door open for you, say thank you.

Let the person who held the door for you go ahead of you in line.

Golden Rule Reminders

Say please and thank you to customer service employees.

Be courteous to waiters and waitresses.

“Clean Up, Clean Up, Everybody Clean Up!”

If you made a mess in public or at work, clean it up.

Put away equipment you used at the gym.

Clean up after your dog.

If you are a guest at someone’s house, clean up any messes you made.

Throw away your garbage.

Before putting dishes in the sink or dishwasher, scrape off the food.

Close doors, cabinets, and drawers when you are finished.

Restroom Rules

After using the toilet, flush it and wipe away mess on the seat.

If the toilet paper roll is empty, replace it.

After using the bathroom, wash your hands.

When washing your hands in a public restroom, don’t leave a mess with the water and paper towels.

Shopping Etiquette

Don’t suddenly stop walking in the middle of an aisle or sidewalk.

If you are in line with a full cart, let the person with one or two items go ahead of you.

Don’t leave shopping carts in parking spots; put them in the return areas.

Common Courtesy

Don’t take up an extra seat with your belongings if the bus or train is getting full.

Be punctual, and if you’re going to be late or not going, let the other person know.

Close your mouth when you chew.

When you cough or sneeze, cover your mouth.

Respect personal space.

Make your children behave in public.

On weekends, don’t use your lawn mower before 8 A.M.

If you owe money, pay it back.

Don’t interrupt when someone is speaking.

When you are conversing with people, look at them and not your phone.

After reviewing these thirty helpful suggestions, I noticed the common thread involved in common courtesy: we must put others’ comfort and feelings ahead of our own inherently selfish behaviors. While this may not always come naturally, certainly the benefits are worthwhile. I’m reminded of a line in the play that I teach my seventh graders every year, A Christmas Carol: Scrooge and Marley, said by Jacob Marley: “An act of kindness is like the first green grape of summer: one leads to another and another and another…the gift of goodness one feels in the giving is full of life. It…is…a…wonder.”

Certainly, I hope my students leave my classroom with increased knowledge of literature and writing and critical thinking, but more importantly, I hope they take with them a value of kindness and courtesy, the same lessons I have been teaching Alex for more than two dozen years. Although manners and polite social behavior don’t appear in state standards for instruction, nor are they part of standardized testing, I’m convinced that few things in life are more valuable than learning social skills. And now, I’m off to clean up the mess of papers and books I’ve left on my coffee table; after all, that’s the polite thing to do.

“Do to others as you would like them to do to you.” Luke 6:31

Sunday, May 15, 2016

The Yeast Beast

 
“But when it is a bad plant, one must destroy it as soon as possible, the very first instant that one recognizes it. Now there were some terrible seeds on the planet that was the home of the little prince; and these were the seeds of the baobab. The soil of that planet was infested with them. A baobab is something you will never, never be able to get rid of if you attend to it too late. It spreads over the entire planet. It bores clear through with its roots… ‘Children,’ I say plainly, ‘watch out for the baobabs!’” Antoine de Saint Exupery, The Little Prince

Every May I teach the novel The Little Prince to my honors seventh grade students. Last week as we were discussing the problem of the baobabs, we talked about the symbolic meaning of those terrible plants. As we brainstormed what the baobabs might represent in today’s society, my students suggested rumors, wars, pollution, and disease, to name a few issues. We talked about the importance of not procrastinating and taking care of problems right away so that they did not get out of hand. The more I thought about the insights they shared, the more I realized that we have been dealing with a baobab of our own for several years: Candida overgrowth in Alex’s digestive tract.

As I have mentioned in previous blog entries, Alex has a tendency to develop thrush in his mouth and throat, which likely spreads to the rest of his digestive system. Not only does this fungal infection make his mouth and throat sore, but it also significantly impacts his behavior. Often the obvious symptoms that he has a Candida flare are increased OCD behaviors, agitation, and even aggression. Over the years, we have treated this problem with various prescription antifungals, such as Diflucan, Nystatin, Ketoconazole, and Itraconazole, along with natural antifungals, including caprylic acid, oregano, garlic, and undecenoic acid. In addition, we have boosted his immune system with vitamins B, C, and D and increased the good bacteria in his system with probiotics. Nonetheless, keeping Candida under control has been a constant battle, and like the baobabs, we try to destroy it as soon as it appears, knowing how physical and emotionally uncomfortable it makes Alex.

This week I also ran across two articles in my continual research for ways to help Alex that suggest a link between fungi and brain disorders. In an article from The Economist published October 24, 2015, entitled “Fungus, the bogeyman: A curious result hints at the possibility dementia is caused by fungal infection,” this potential link is described. [To read this article, please click here.] Citing information published in Scientific Reports, the article describes research done by Dr. Luis Carrasco at the Autonomous University of Madrid in Spain. While the cause of Alzheimer’s disease is still unknown, Dr. Carrasco’s research suggests fungal infection is linked to the disease.

After examining brain tissue from cadavers, none of those who did not have Alzheimer’s had any fungal infection. However, all of the Alzheimer’s patients had fungal cells growing in their neurons. What they could not discern was whether the fungal infection caused the Alzheimer’s or whether the Alzheimer’s made the patients more susceptible to fungal infection. The article also notes that many patients with Alzheimer’s have damaged blood vessels, and Dr. Carrasco noted fungus growing in blood vessels. Although more research is needed to clarify the link between Alzheimer’s and fungal infections, this report indicates potential benefits of treating elderly patients with antifungals.

In another article I read this week, the connection between yeast infections and mental illness is discussed. The article “Yeast Infection Linked to Mental Illness,” published May 4, 2016, on the Johns Hopkins Medicine website discusses research done by Dr. Emily Severance and her associates at Johns Hopkins University that was suggested by people with mental illness. [To read this article, please click here.] This study found that a history of Candida yeast infections was more common in people with schizophrenia and bipolar disorder than in those who do not have these mental illnesses. In addition, they also noted memory loss in women with Candida infections. While researchers are careful not to name yeast overgrowth as a cause of mental illness, they note that more research needs to be done regarding connections between mental illnesses and gut-brain connections and weaknesses in the immune system.

While these recently published research studies are linking fungi to Alzheimer’s, bipolar disorder, and schizophrenia, the link between yeast and autism has been known for years. Thanks to the research of Dr. William Shaw of The Great Plains Laboratory, the importance of diagnosing and treating fungal infections in children with autism has been part of the biomedical protocol. Dr. Shaw’s laboratory offers Organic Acid Tests that detect fungal byproducts produced in the intestinal tract that are absorbed into the bloodstream and later filtered into the urine. In addition, his laboratory offers yeast culture and sensitivity tests that recommend which antifungal medications are most effective in treating the strains of yeast found in the organic acids test. We have had both tests run on Alex several times and have found the results very helpful in trying to address his yeast overgrowth problems. Pursuing this course of treatment has been extremely valuable to us because when the yeast is under control, the difference in Alex is night and day. Clearly, the yeast makes him uncomfortable, affects his brain, and impacts his behavior negatively. Within a short period of being on antifungals, he returns to his sweet and pleasant disposition. Consequently, we destroy our baobab­––yeast––as soon as possible.

Clearly, more research needs to be done on the role fungus plays in various disorders that affect the brain: Alzheimer’s, schizophrenia, bipolar disorder, and autism. If, indeed, fungus causes or exacerbates these conditions, aggressive treatment with antifungals may improve the symptoms or perhaps even cure the conditions. On the other hand, if the root cause of the disorders is weakened immune systems, improving immunity with vitamins may also improve or cure the conditions. Instead of simply viewing Alzheimer’s, schizophrenia, bipolar disorder, and autism as mental conditions, doctors need to recognize physical conditions that impact the brain and affect the behavior. Until a more holistic approach is taken with these disorders, more and more people and their families will suffer the consequences of undiagnosed underlying medical conditions that could be healed, substantially improving the quality of life for the patients and their families.

“But for you who fear my name, the Sun of Righteousness will rise with healing in His wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2

Sunday, May 8, 2016

Alex's Mom

 
Twenty-five years ago, just before Mother’s Day, I found out that I was going to be a mom. All I had ever wanted to be in life was a mom, probably because God had blessed me with such a wonderful mother, and I wanted to be loving and caring, just like her. At the time, I didn’t realize that this baby I was carrying would be my only child, and he would have autism. Truthfully, this was not what I had planned for my life because I had wanted to have more than one child, and I wish more than anything that Alex never had to struggle with autism. Nonetheless, God’s plans are always greater, and I know that He gave me Alex because Alex was exactly the child I needed. On this Mother’s Day when children express their gratitude for all their mothers have done for them, I am thankful for all Alex has done for me.

Before I had Alex, I saw myself as fearful, avoiding difficult situations whenever possible.

Because of Alex, I have had to become bolder, making sure that he gets everything he needs.

Before I had Alex, I had kind and compassionate people in my life.

Because of Alex, I have even more kind and compassionate people in my life whom I never would have met, had Alex not had autism.

Before I had Alex, I thought I was a pretty good judge of character.

Because of Alex, I am able to see the purest hearts: those who see Alex’s goodness, are drawn toward him, and reach out to him in kindness.

Before I had Alex, I enjoyed the peace and solitude of praying alone before I fell asleep every night.

Because of Alex, I know there is nothing better than to listen to the earnest bedtime prayers of a child whose faith and hope in God are complete.

Before I had Alex, I wanted to write about something meaningful.

Because of Alex, I have someone meaningful to write about.

Before I had Alex, I was impatient and disliked having to wait for anything.

Because of Alex, I have learned to be more patient, have tried to look forward with anticipation instead of frustration, and have learned Alex’s motto: “Wait and see.”

Before I had Alex, I loved my husband, Ed.

Because of Alex, our love for each other has grown even stronger as we have shared struggles and triumphs, working together to make the best life possible for our beloved son.

Before I had Alex, I was thankful to have loving and supportive parents as a child.

Because of Alex, I am very grateful to still have my parents close at hand because I have needed their faith, love, and support even more as an adult raising my own child.

Before I had Alex, I had faith in God.

Because of Alex, my faith has been tested mightily, and I trust God more than I ever thought I could.

Before I had Alex, I was happy.

Because of Alex, I know true joy.

Shortly after we found out that Alex had autism, Ed commented that Alex would be a little boy longer because he would need us to do things for him longer than other children, who could be independent sooner. Whenever I am tying his shoes or cutting his meat or zipping his jacket because autism has impaired his fine motor skills and medication makes his hands shaky, I wonder when he will be able to do these tasks by himself. As he towers over me in his tall young man’s body, he grins and cooperates, knowing that as his mom, I will take care of his needs until he can do them on his own. In the meantime, I’m also his personal assistant who coordinates his support team, the home pharmacist who oversees his medications, the trivia buff who plays Jeopardy with him every weekday afternoon, his personal chef who prepares gluten-free and dairy-free food for him, and his laundress who makes sure all his clothes are clean. The other day, he informed me––perhaps because he knew this proclamation would please me––that I was also his best friend. How richly God has blessed me by making me Alex’s mom!

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25

Sunday, May 1, 2016

Managing Worry

 
Although Autism Awareness Month is officially over for another year, families affected by autism know that awareness is an everyday occurrence, not just something to consider for thirty days of the year. For our family, April was a month focused on dealing with Alex’s increased anxiety and figuring out ways to lessen his stress, which is also ours. We are blessed to have outstanding professionals who work with Alex, understand both autism and anxiety, and help us brainstorm ways to make him better. However, as Alex’s parents and round-the-clock caregivers, Ed and I know that the primary responsibility of teaching Alex how to cope falls squarely upon us. Thankfully, we are seeing improvement.

According to a research article published in April 2009 in Clinical Psychology Review entitled “Anxiety in children and adolescents with autism spectrum disorders,” 11%-84% of children diagnosed with an autism spectrum disorder also “experience some degree of impairing anxiety.” [To read this article, please click here.] Additionally, research shows that more than 55% exhibit symptoms of at least one anxiety disorder. Consequently, more than half of children with autism also must deal with anxiety.

Another scholarly article published by the Indiana Resource Center of Autism entitled “Anxiety and Autism Spectrum Disorders” notes that anxiety appears to occur more often in those with higher functioning autism. [To read this article, please click here.] Researchers suggest that those who are higher functioning appear to have a greater awareness of their environment and of how others perceive them, which could lead to greater anxiety. On the other hand, those deemed lower functioning may lack the language skills needed to express their anxiety. Nonetheless, many people with autism, no matter what their functioning level may be, need support in dealing with anxiety.

This article goes on to recommend cognitive-behavioral therapy as the best way to teach people how to cope with anxiety. Cognitive-behavioral therapy focuses on identifying negative and irrational thought patterns in which the person may overgeneralize, as well as finding new ways to think about situations. For example, when Alex becomes anxious, he will jump to the conclusion that something he wants to do will never happen, and his negative assessment of the situation makes him more anxious. By working with his behavioral therapist, he is learning to reassess circumstances in a more realistic way and to use coping skills to keep his negative thoughts from escalating into a full-blown panic attack. In addition, we must reassure him that things will be all right while never diminishing his feelings that are very real to him.

Another struggle Alex faces in addition to his anxiety is his impaired verbal skills that make expressing his feelings difficult, especially when he is upset. For this reason, he may resort to nonverbal communication, such as silently scowling, grabbing, or even hitting, to let us know he’s upset. Clearly, these behaviors are not socially acceptable, so we keep working with him to develop ways to deal with his anxiety and frustration that allow him to express his feelings verbally. I’m sure that he is tired of hearing us say, “Use your words, not your hands,” but he needs to learn better ways to cope with his anxiety.

One of the best skills Alex has learned in life is how to do research on topics he finds interesting. Not only is he adept at finding information online, like many young people his age, but he is also quite skilled at doing old-fashioned book research. Over the years, he has acquired a nice collection of reference books that he regularly consults whenever he wants to learn more about a particular subject. A few nights ago, after Alex went to bed, Ed discovered that he had been consulting one of his beloved medical books. The Mayo Clinic Family Health Book, a nearly 1500 page guide, was opened to an article that Alex had apparently been reading––“Coping with Anxiety.” Bless his heart; he was trying to figure out how to help himself. Apparently, his research proved useful because he seems better. He identified the problem, searched for solutions, and then put the helpful tips into practice. To summarize, this article recommends the following:

1. Take action. Figure out the cause of stress and deal with it.

2. Let it go. Put aside the past, make changes if you can, and [Alex underlined this] “let the rest take its course.”

3. Break the cycle. Deal with anxiety by distracting yourself with exercise or a hobby.

4. Take care of yourself. Get plenty of exercise, rest, and relaxation, and eat healthy.

5. Talk to someone. Discuss problems with friends, family, or a counselor.

In addition, we have been trying to teach Alex how to verbalize when he’s frustrated, assuring him that he can let us know when he’s upset. This week, I told him that when my sister, his adored Aunt Tammy, was a little girl, she would stomp off whenever she got upset and yell, “I’m mad, and I mean it.” Although he seemed to find this anecdote amusing as I was telling it to him, clearly he took the message to heart, as we discovered a few days later.

On Friday, Alex became worried, trying to figure out how to rearrange his precious schedule so that he could do several things he wanted to do. As Ed and I tried to help him by offering suggestions, he became more frustrated because he wanted to take charge of the situation. As he walked away from us, heading upstairs to his room, he informed us, “I’m mad!” When he got to his bedroom door, he emphasized the point by yelling down to us, “And I mean it!” Respecting his space, we left him alone, and in a few minutes of peaceful solitude in his room, Alex figured out on his own not only how he could rearrange his schedule but also how to calm himself down without any help from us. Essentially, he is learning two valuable lessons: how to cope with stress and how to be independent.

The other day when the three of us were riding in the car, Ed remarked to Alex that we are very proud of him. Unsure of whether Alex knew what he meant, he asked Alex if he knew the definition of the word “proud.” Since Alex didn’t seem certain, Ed went on to give examples of why we are proud of him, including how pleasant he is and how nicely he behaves when we take him places. Alex nodded and smiled and said, “Proud means impressed.” We were impressed (and proud) that he found the perfect synonym, but we were even more pleased that he understood what we were trying to convey to him. Although we hate that he has to struggle with autism and anxiety, we are proud of how well he copes with these issues the vast majority of the time. Moreover, we are impressed with his desire to overcome obstacles, even trying to manage them independently. While we hope that we have taught him what he needs in life, we know the real source of his strength lies in his faith in God, and that, too, makes us proud as his parents.

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done.” Philippians 4:6