Sunday, October 4, 2015

Yes, I Am an Autism Mom

Of my various roles in life, none is more important to me than being an autism mom.  More specifically, being Alex’s mom takes precedence over everything in my life. After more than twenty years of being an autism mom, imagine my surprise to discover this week that the term “autism mom” apparently offends some people.

In her Huffington Post essay published this week, “Why I Call Myself an ‘Autism Mom,’” Shawna Wingert  explains that she, too, recently discovered that the term “autism mom” strongly offends some people. Although I wasn’t sure whom she was referencing, once I read scathing comments in response to her essay, I found the critics—adults who say they have autism and some who simply criticize everything parents with autism do and say.

Truly, I admire that Shawna Wingert earnestly tries to understand the point of view of those who criticize her for calling herself an autism mom, and she beautifully defends using that title. She explains, “I never want anyone to assume that I somehow think my son’s autism is about me.” Perhaps because I’ve been an autism mom longer than she has, I don’t feel the need to be as cordial to those who want to criticize autism moms. In fact, I want to defend her and all the other autism moms from those who would dare question our intentions and motives.

As she also notes, the phrase “soccer mom” commonly exists in our society, and no one seems upset by that terminology. Moreover, university bookstores stock t-shirts and sweatshirts to sell to students’ parents emblazoned with the name of their college followed by “Mom” or “Dad.” For most parents, our lives become entwined with our children’s, as do our identities. Hence, we become soccer moms, dance moms, Valpo moms, etc. We are proud of our children and involved in their lives and activities, and we enthusiastically take on the titles that describe our children. Autism moms are no different. Instead of taking our kids to practices and games, we take them to speech, occupational, and behavioral therapies.

Like Shawna Wingert and many others, I am an autism mom and will continue to use that title unabashedly. However, autism is not who I am, nor is it who Alex is. Autism is simply what occupies our time, just as soccer does for soccer families.

However, those who bash the term “autism mom” (and made their presence known through harsh comments responding to her essay) accuse us to trying to claim autism as our own, something we “have” that really “belongs” to our kids. As Shawna Wingert asserts, “Autism is his, and his alone. I do, however, think that parenting a child with autism is mine.” Indeed, parenting a child with autism is something we own, something that binds autism parents to understand each other, allowing us to empathize because we share situations typical parents do not.

Furthermore, some of the nasty responses to this essay suggest that autism moms are self-centered and like those with Munchausen Syndrome By Proxy, as though we enjoy having children with a disability because we seek attention ourselves. Believe me, if I could erase autism from our life, I would do it in a heartbeat. Honestly, I hate how hard autism has made life for Alex, and we have focused our efforts on making his life better and easier in spite of the havoc autism has wreaked on his body and mind. By sharing our experiences in my blog, I sincerely want other autism parents to know that they are not alone, and I also want to increase autism awareness for those who don’t know firsthand what autism parents are dealing with on a daily basis. Furthermore, I always strive to show God’s grace in our lives; my intention is to glorify God, not myself.

As an autism mom, I am grateful God has given me the organization needed to keep track of the three dozen pills we administer to Alex every day and all his various appointments and paperwork. As an autism mom, I’m appreciative that I have the energy needed to help Alex with his daily living skills and that I am healthy and strong so that I can take care of him. As an autism mom, I am thankful for the wonderful team of specialists who help Ed and me develop Alex’s skills and make him the best he can be. As an autism mom, I am fortunate to have family and friends who have prayed for us, supporting us in the difficult times and celebrating with us in the good times. As an autism mom, I am blessed that God has always taken care of us, showing us the paths we should take and keeping Alex safe from danger. As an autism mom, I continue to pray for healing so that Alex and others like him no longer have to struggle with autism, and so that we no longer need the term “autism mom” because we will simply be grateful moms instead.

“I will comfort you there in Jerusalem as a mother comforts her child.” Isaiah 66:13

Sunday, September 27, 2015

The California Autism Lawsuit: Love Your Neighbor?

This past week, the media has reported the case of two families in Sunnyvale, California, who filed a lawsuit against the parents of a boy with autism. Filed in June 2014, this lawsuit is now being heard in court. [To read a news report of this case, please click here.] The plaintiffs allege that the parents, who were their neighbors, did not do enough to control their now eleven-year-old son with autism and that this boy terrorized their neighborhood. Moreover, they claim that his aggressive presence in the neighborhood could reduce their property values. Even though this family moved out of the neighborhood a year ago and say they have no plans to return, neighbors fear they may return to their former home that they have not yet sold.

Since there are at least two sides to every story, the judge must determine what was happening in that California neighborhood. Are the neighbors filing the lawsuit intolerant of autism, or are they simply protecting their children from an aggressive child? Are the parents of the child with autism doing the best they can in a difficult situation, or are they negligent, failing to control their son from harming others? The courts will decide.

According to the neighbors, the boy with autism repeatedly kicked, hit, slapped, and bit people, especially younger children. As one plaintiff notes: “For us this case is not really about autism. It’s about the safety of our children. They were attacked on multiple occasions.”

Moreover, they claim that the boy’s parents and babysitters did not properly supervise him, which led to his being a threat to other children in the neighborhood. “This has to do with the parents’ responsibility to control their child,” said one of the neighbors.

Of course, parents of children with autism fear that this lawsuit could encourage intolerance toward their children and potentially generate similar lawsuits. This week, the Huffington Post published an online response to the California lawsuit by autism mom and activist Bonnie Zampino entitled “My Son Has the Kind of Autism No One Talks About.” [To read this essay, please click here.] In her heartfelt essay, she discusses the lack of true autism awareness, which she attributes to media feel-good stories about autism emphasizing rare achievements and ignoring problems associated with aggression in autism.

Drawing from her own experience with her son who has struggled with autism and aggression, Ms. Zampino explains the isolation that comes with a child whose behavior is not socially acceptable. She notes, “Because I didn’t know what my son was going to do to other children, we stopped going to the park.” She adds that they also stopped going to the library, birthday parties, and play dates.  As a result, she states, “Because of my need to isolate my son, I also isolated myself, too.”

Moreover, she challenges the comments by the plaintiffs in the California lawsuit who claim that their case is not about autism. She points out that a lack of autism awareness has caused these neighbors to fail to understand the issues the family whose son has autism are facing. She notes, “Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.” However, she also believes that once people truly become aware of autism, even the often hidden negative aspects, “We will become a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them.”

Having dealt with Alex’s aggressive behaviors linked to autism, I know how terrifying and upsetting this behavior truly is. While I can empathize with those autism parents who are isolated from the rest of society because their children’s behavior poses a threat to others, I think this is necessary until their children’s behavior can be managed. Until our children learn to interact appropriately, we must protect others from their aggression. Moreover, we need to respect that other parents have the right and responsibility to protect their own children, just as we want our children to be protected from those who might harm them.

For long periods of time, we had to isolate Alex from the world because we could not trust him to behave appropriately. Ed or I would run errands such as grocery shopping alone while the other stayed home and supervised Alex. We could not do typical family outings because we were not a typical family; we had a child with autism who was overwhelmed in social situations and overreacted to sensory stimuli. We could not attend family gatherings because we never knew when he might suddenly take off his clothes, say inappropriate remarks, or physically attack someone out of the blue. To protect his younger cousins, we just stayed home. Although our self-imposed isolation was sad, it was necessary until Alex could behave himself in public.

Certainly, we need more autism awareness in our society, but the kind of publicity the California lawsuit brings encourages even more negative attitudes toward autism. Autism parents must teach our children to behave appropriately, even when it is difficult for them and for us. We must teach our children socially appropriate behaviors if we want them to live and interact in society. Pity parties and whining about how hard our lives are does no good for our cause. Although we may say that our children use behavior to communicate, another parent doesn’t care when our kids are inflicting bodily damage upon theirs. If we can’t make our children behave, then we need to protect them and others by isolating them.

Here’s the reality: children with autism grow into adults with autism. We must address aggressive behaviors, whether it be with therapy and/or medication, when the child is more physically manageable. As upsetting as aggressive behavior is in children with autism, adults who exhibit these behaviors pose true safety risks to others and themselves. We have explained to Alex that as a six-foot-tall young man, he cannot touch other people because he frightens them. We have also explained that someone may mistake his intended friendly gesture as a threat, and they may shove or punch him to get him out of their way, not knowing or caring that he has autism. Indeed, the media has reported cases where adults with autism have been arrested for assault, and in one terrible case, even shot to death by a man protecting his family from the aggressive behavior of a neighbor man with autism. As autism parents we must try to make our children understand the rules of society if we have any hope of their living as part of the community who doesn’t always understand them.

While the case of the Sunnyvale, California neighborhood filing a lawsuit instead of being able to cooperate and resolve their problems reasonably is disappointing, poet Robert Frost had the right idea when he wrote, “Good fences make good neighbors.” Until we help our children with autism to control their aggression, we must keep the world safe from their behavior, and we must keep our children safe from those who do not understand them. Although we would hope that our neighbors could love our children, perhaps at times this is best done from a distance with a fence––literally and figuratively––between them and us.

“And you must love the Lord your God with all your heart, all your soul, all your mind, and all your strength. The second is equally important: ‘Love your neighbor as yourself.' No other commandment is greater than these.” Mark 12:30-31

Sunday, September 20, 2015

Playing Detective

When I was a kid, I loved reading The Happy Hollisters series of books in which a family of five young siblings somehow finds themselves involved in mysteries they need to solve. Perhaps I was initially drawn to this fictional family because the oldest daughter is also named Pam, but I stuck with the series, reading every one I could find at the public library, fascinated by the ways these kids put together the clues to get to the bottom of the mysteries. Little did I know that as an adult, I would be solving mysteries of my own.

Because not enough is known about autism and because Alex’s communication skills are weak, I often find myself sifting through clues, trying to discern why he does some of the things he does. By putting together the research that I have done over the years––especially medical research––with careful observation of Alex, I can usually come up with potential reasons that have reasonable validity. Sometimes, however, I must sort through a wide variety of clues before I know the real reason.

Recently, Alex has been a little off. While his behavior has not been that bad, he just doesn’t seem quite like himself. Because we never want behaviors to escalate, we always try to get to the bottom of the problem right away. After having such a wonderful summer where he was content and cooperative, we didn’t want him to regress. Therefore, I went into detective mode and tried to figure out what was causing small changes in Alex.

Usually the culprit for behavioral challenges is yeast overgrowth in his digestive system, namely thrush, which makes his mouth and throat sore, causing him to be irritable. After dealing with yeast flares for more than three years, we recognize the symptoms and know that we must treat him immediately with antifungal medication to ease his discomfort and to prevent increasing agitation. Our experience has also taught us that yeast flares bring “abcd” symptoms: acne, behavior issues, coating of tongue, and dandruff. Fortunately, we didn’t see any of the telltale signs this time. Moreover, Alex seemed to be his usual pleasant self in the evenings, so an ongoing problem like yeast seemed unlikely. Therefore, we crossed yeast flare off our list of potential causes.

Another reason for Alex to be irritable is change. From past experience, we know that changes in routines can cause negative changes in his behavior. Although we considered that our returning to our teaching jobs after the summer off work might have bothered Alex, he seemed to be adapting to the transition reasonably well. In addition, he had maintained his afternoon schedule throughout the summer: Tuesdays with Jennifer for behavioral therapy, Wednesdays with Jessica for respite, Thursdays with Noel for music therapy, and Fridays with Jennifer for recreational therapy. Since his schedule had stayed the same, he didn’t have to adapt to any changes. In addition, we had not made any changes to his medications or supplements, so we couldn’t point to those as potential triggers for his being a little different.

After ruling out obvious causes, I then focused on potential environmental changes. While Alex doesn’t show typical seasonal allergy symptoms, such as sneezing, runny nose, or watery eyes, he has in the past acted irritable during allergy season. After checking the Weather Channel website and discovering that weed pollen has, indeed, been moderate to high in our area the past couple of weeks, I suspected that pollen could be bothering Alex. However, he usually does not want to be outside when pollen bothers him, and this week he has specifically requested to go outside in the yard, enjoying the fresh air. In fact, being outside seems to put him in a good mood, so pollen is probably not bothering him. Also, I suspected that some of the weather we’ve had lately could have affected him because he is like a human barometer who senses every change in air pressure, often acting irritable when the pressure is very high or low. Despite thunderstorms and a deluge of rain, he didn’t seem bothered by the weather.

Aside from the natural environment, Alex can also be annoyed by changes in the economy. Since he watches the business news channels faithfully, he is aware of oil and gas prices, stock market trends, and interest rates. At times, he has been very upset by high oil and gas prices and drops in the stock market. However, he has learned to take economic news in stride and not let changes upset him. In fact, he often compares various fluctuations to the stock market, knowing that things naturally go up and down, making observations, such as, “Temperatures are like the stock market; they go up and down.” Since Alex has come to realize that the economy fluctuates and watches the news without getting upset, we decided that he was not affected by the stock market, either.

After ruling out all of the usual suspects, I had to look deeper to figure out more clues and see what might be behind them. First, we noted that he typically seemed irritable in the morning and late afternoon, and he was at his best in the evenings, especially after a big dinner. During these times when he seemed off, we noted that he was anxious, impatient, fatigued, mentally foggy, and shaky. Although he has been getting a good night’s sleep every night, he still seemed tired in the morning. However, he would be energetic and active physically and mentally every evening. I wondered if he needed for his morning medications to take effect, but even when they should have been helping, he still was not quite himself. Moreover, when he was at his best every day, his medications would have been wearing off. I even considered that some of these symptoms could be side effects of some of his medications, especially the tremors that go along with lithium that he takes to regulate his moods.

Another factor I considered was the change in Alex’s waistline. Since Alex weighs himself every night before he goes to bed, I noticed that he has lost some weight. Although he looks quite healthy and has lost the belly weight caused by some of the medications he takes, something has caused him to drop those pounds. In thinking about his eating habits, I realized that once his obsessions about eating for set amounts of time or insisting upon three servings of food every meal had passed, he wasn’t eating as much as he used to eat. In addition, he didn’t seem interested in eating breakfast, nor was he snacking as much as he used to. Not wanting to force him to eat, we trusted that he knew what his body needed, but perhaps this was the culprit.

Realizing that he was at his best after eating a large dinner, I began to wonder if Alex was off whenever his blood sugar was low. After some quick research, I discovered that symptoms of low blood sugar include the following: fatigue/sleepiness, shakiness/tremor, anxiety, irritability/impatience, mental confusion, and dry lips. Alex had all of these symptoms. Consequently, I decided we needed to change his eating habits to see if eating more would alleviate the symptoms we’d been observing.

This week, Ed has been fixing Alex breakfast that includes fresh fruit every day, and we have increased the amount of food he eats for lunch, as well. In addition, we have been offering him healthy snacks, such as hummus, tomatoes, and bananas, all of which he especially likes. After just a few days of this new healthy diet, he already seems better. He has been more active mentally and physically in the mornings, and he doesn’t seem as anxious and irritable in the afternoons. Thankfully, he can afford to gain some extra weight, so we can feed him more without worrying about that consequence. Hopefully, we have figured out the problem and the solution, both of which are fairly simple. While I’m thankful that my childhood reading habits taught me the value of looking for clues and trying to solve mysteries, I’m even more grateful that God shows us the way and gives us the wisdom to help Alex be his best.

“Listen as Wisdom calls out! Hear as understanding raises her voice!” Proverbs 8:1

Sunday, September 13, 2015

Reality Check: Adults with Autism and a Lack of Independence

Last week, Ed and a colleague had a conversation about their families, and his colleague kindly showed interest in how Alex is doing. She asked where Alex is living and if he can drive. Thinking perhaps she didn’t realize Alex’s limitations, Ed reminded her, “You know he’s autistic, don’t you?” Although she did remember that Alex has autism, she didn’t know the full extent to which autism impairs his independence. Ed went on to explain that Alex is living at home with us and will likely be living with us for a long time. In addition, he does not have a driver’s license, and that’s a good thing. With his impaired motor skills and the medications he takes for anxiety, he would be a danger behind the wheel. We know this because we have seen him “drive” Dale Earnhart, Junior’s race car on the NASCAR video game at our local arcade. When he’s not running into the race track walls, he’s running into the backs and sides of other cars. He will not be driving anytime soon, not even “slow on the driveway every Saturday” like Rain Man’s Raymond Babbitt.

Here’s the reality––most adults with autism cannot live independently. Earlier this month, The Indiana Resource Center for Autism at Indiana University posted the following on Facebook: “Today, the unemployment rate for those on the autism spectrum is as high as 70 or 80 percent.” However, even they seem to need a reality check, as they added, “From the first moment of diagnosis, we need to be teaching skills that will promote a better outcome for our students/children.” I have some news for them: we have been teaching those skills for more than twenty years, and Alex is still currently unemployable, due to his impaired motor, social, and language skills, all of which we have been addressing through multiple therapies and interventions. For example, every day since he was little, we have worked on his manners by reminding him to say “Please” and “Thank you,” yet he still needs constant reminders to say these polite phrases. He’s not intentionally rude; he’s just socially impaired, despite all our best efforts to teach him manners.

Last weekend, The New York Times published an essay by Eli Gottlieb entitled “Adult, Autistic and Ignored” that addresses the problems adults with autism face. As the younger brother and guardian of his older brother with autism, he has seen firsthand what life is like for adults profoundly affected by autism. He points out that 39% of young adults with autism receive no services after high school, and about 90% of adults with autism are unemployed or underemployed. In addition, he notes that little research has been done regarding adults with autism since most autism research focuses upon children. Specifically, he quotes a professor at University of North Carolina at Chapel Hill, Dr. Joseph Piven: “There is almost no literature on older adults with autism in the field, so we virtually have no knowledge base.” If no one bothers to study adults with autism, no one knows what their needs are or how to help them.

The recognition that adults with autism need better services is not a new concept. In 2007, Autism Advocate published an article entitled “When the School Bus Stops Coming: The Employment Dilemma for Adults with Autism” by Dr. David L. Holmes. This article addresses the problems that occur once children with autism are too old to receive supports from their local school districts. This article focuses upon the lack of available services, the importance of appropriate placements, and potential employment options for adults with autism. In addition, the article emphasizes planning for the future, specifically, putting supports into place, such as Medicaid waivers. Dr. Holmes ends the article optimistically saying that progress is being made in helping young adults with autism make the transition from school to work; however, the reality is that this is not so. Most adults with autism are unemployed and living with their parents.

In the September 2013 article “Few Young Adults With Autism Living Independently,” Shaun Heasley cites research that shows that nearly 9 in 10 young adults with autism have spent time living with a parent or guardian, and most have never lived independently. Quoting researcher Kristy Anderson, “The evidence presented in this study suggests that the vast majority of this population will be residing in the parental or guardian home during the period of emerging adulthood.” I might add that these adult children will probably be living with their parents or guardians even longer as funding for supported living and availability of group homes becomes even more limited as more and more children with autism become adults and tax an already overburdened system.

Despite all of our best efforts to prepare our children for adulthood, many of our children with autism cannot live independently. Not only are they unable to find appropriate jobs, but they also need supervision and assistance with daily living skills, which means they require expensive and not always available supported living facilities, or more likely they must live with their parents or guardians. In a wonderfully candid essay, "I Never Dreamed," published this week, autism dad Jeff Davidson outlined the reality of how much is required to care for his son who has autism. Among the many daily tasks he lovingly performs for his son, he states, “I never dreamed he would always need our help with bathing, getting dressed, shaving, and all of the other basic needs.” Unlike his son, Alex is mobile and verbal, yet he also needs a great deal of help with his daily living skills, which is why he lives at home with us.

To be honest, Alex in many ways is a six-foot-tall toddler. Every day, we must help him with meal preparation, getting dressed, grooming (including washing, drying, and combing his hair, along with shaving, brushing his teeth, and keeping his fingernails and toenails clipped), and cleaning his eyeglasses and reminding him to wear them. Thankfully, he is very cooperative with us and likes to be clean and neat, so he doesn’t mind that we tell him he needs to wear deodorant, and he happily takes a bath every day. In addition, we administer his medications and vitamins three times a day, and he willingly swallows every pill, which is another blessing. As his personal assistant, I arrange all of his appointments, consult with his team of therapists and other professionals who work with him, take care of his finances, deal with the insurance company, and do his laundry. (To be fair, I also make appointments and do laundry for his dad.) Since he cannot drive, Ed and I chauffeur him wherever he needs to go.

While we are happy to take care of our beloved son who needs our help and thankful that he has made significant progress in his behavior, we also want him to become more independent. Knowing that he will probably outlive us, we hope that he can live a fulfilled life on his own someday. In the meantime, we keep working with him to develop the skills he will need, praying that God will provide everything Alex needs so that one day he can be independent and not constantly rely upon us or anyone else for most of his needs. As we wait, we hold onto our faith, trusting that God will always take care of Alex.

“I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers!” Isaiah 65:24

Sunday, September 6, 2015

Filling a Need

Some people get it. When they do, we realize that God has put them in our path to fill a need; their presence in our lives is no coincidence. Finding the right professionals to work with our children who have autism is an important task we autism parents face. Over the years, we have been fortunate to find some outstanding individuals to work with Alex while others have been less impressive. At times we have stayed with some professionals longer than we probably should have, not ready to make a change. Sometimes God has to push me out of my comfort zone with both hands so that I know that it’s time to do something new. That happened last fall, and my full understanding of the need for change was clearly reinforced this past week.

Last August, when we took Alex to the pediatric dentist he had been seeing for nearly ten years, we were told that his upper twelve-year molars were badly decayed and would need to be removed. This came as a shock to us because his teeth had been fine when we had taken him six months earlier for a check-up. What was even more frustrating was that we were told this could wait unless the pain became so severe it kept Alex awake at night, which struck us as negligent. In addition, the dentist left this rather important news to a hygienist to relay to me instead of talking to me himself. This was the same dentist who had condescendingly dismissed me repeatedly anytime I had asked about Alex’s wisdom teeth, telling me that we weren’t going to worry about them.

Unsatisfied with the information they had given, I decided to make an appointment with my family dentist, whose judgment and skill I completely trust. He wisely had a panoramic x-ray taken of Alex’s teeth, which revealed that his wisdom teeth were badly impacted and likely damaging the roots of his twelve-year molars, which probably accounted for their decay. He recommended removing the twelve-year molars and the wisdom teeth at the same time and referred us to an experienced oral surgeon. As I explained in my November 9, 2014, blog entry “Healing,” Alex came through the surgery to remove his molars and wisdom teeth­­––as well as the recovery afterward––amazingly well, and we were thankful to have this procedure done by such a skillful doctor.

After this experience, I began to question the pediatric dentist’s decision to ignore my concerns as a parent regarding Alex’s wisdom teeth. Perhaps if he had taken my questions more seriously, Alex would not have lost his twelve-year molars due to the damage by the wisdom teeth. Moreover, I was not happy with his dismissive attitude toward me and insistence that any dental procedures done on Alex be performed under general anesthesia, which carries its own risks. Consequently, I decided it was time for a change. For his next regular dental appointment in February, we took Alex back to our family dentist. Encouraged by the kindness and compassion shown by both the hygienist and the dentist, Alex complied beautifully with having his teeth cleaned and checked, and we felt this was a sign we had made the right decision to change dentists.

When we took him again a few weeks ago for his six-month appointment to have his teeth cleaned and checked, we were pleased that Alex was quite calm and comfortable at the new dentist’s office while they worked on his teeth. However, we were a little disappointed to discover that he had a small cavity. Nonetheless, our dentist felt confident that Alex could handle having the cavity filled because he had been so good during the cleaning and check-up appointments. In addition, we were able to schedule an appointment to have the tooth filled the next day, which meant that we could get this procedure done before I had to go back to school the following week. Or so we thought.

The next day, the appointment began with putting numbing cream on a cotton roll as preparation for the numbing shots. As the numb began to spread through Alex’s mouth, he started to panic at the strange sensation he’d never felt before. (When he’d had his first two cavities filled two years earlier, he had been under general anesthesia instead of a local anesthesia.) He also wasn’t very happy about having the wad of cotton under his upper lip and complained that he had a fat lip. Although he never really escalated, he was anxious and kept grabbing my hands, seeking reassurance. Even though we tried explaining to him that this was temporary and that his lip wasn’t really fat, he was still unnerved (pun intended) by the situation.

Fortunately, our compassionate dentist understood Alex’s anxiety and offered an excellent idea. He gave us a tube of numbing cream and long handled cotton swabs to practice at home with Alex so that he could get used to the sensation of numbness and realize that the feeling does wear off in time. Additionally, he reassured us that Alex’s tooth could wait a few weeks without worrying about further damage, so we could reschedule the appointment when we felt Alex was ready to handle it. Most importantly, he emphasized to us that he didn’t want Alex to be scared, and he didn’t act a bit inconvenienced that Alex wasn’t up to having his tooth filled that day.

After practicing with the numbing cream at home, Alex became comfortable with the sensation of having his mouth numb, and I went ahead and made another appointment to have his tooth filled. Truthfully, I had a lot of trepidation about whether he could handle the numbing shots, the drill, and everything else involved in repairing the tooth. Nonetheless, we prayed that he would not get upset and put our trust in God and our dentist that everything would be okay.

Last Thursday, I scheduled a noon appointment: after lunch, between The Price Is Right and Jeopardy!, and at a time when he is usually fairly mellow. The dental assistant took us back to a large private room where Ed and I could also stay with him comfortably and where they could close the door so that he wouldn’t hear noises from the other procedure rooms. After turning on the television to a baseball game that provided a welcome distraction, our dentist and his assistant compassionately and calmly took care of Alex’s tooth, preparing him for every step of the process by explaining what would happen and praising him for being so cooperative. Thankfully, Alex was remarkably calm and didn’t seem bothered a bit by anything they did to his mouth. He appeared completely comfortable and relaxed the entire time he was in the dentist’s chair, which was a blessing. The dentist did everything possible to reassure Alex, and Alex trusted him completely.

In fact, things went so well that with our approval, the dentist also sealed another tooth to prevent decay since Alex was already numb, and the assistant smoothed a tooth that had been chipped a while ago so that it would not bother his lip and would look better. Not only did Alex sail through the planned procedure, but he also handled the extras added at the last minute quite well. Of course, Ed and I were extremely relieved that things went smoothly, and we were especially proud that Alex handled perfectly a new situation that many people find difficult. We also truly appreciated the understanding and wisdom of our dentist, who knew what Alex needed to feel safe and comfortable and waited until he was ready.

Consequently, we know that God has led us to change dentists to one who can provide what Alex needs. We need someone whom we can trust to take care of Alex and not only make him feel comfortable in a new situation but also provided a good first experience that will make him not afraid to face similar situations in the future. As Alex now ends his nightly prayers, “God bless Dr. Lyzak.”

“He will once again fill your mouth with laughter and your lips with shouts of joy.” Job 8:21

Sunday, August 30, 2015

Risperidone and Autism

Dealing with aggression in autism, especially in children who have reached adult size, proves one of the most difficult challenges for parents of these children. Currently, the FDA has only approved two drugs for irritability in autism—behavior that includes aggression, temper tantrums, and self injury––risperidone and aripiprazol, whose brand names are Risperdal and Abilify. While medication can help address many of the behaviors associated with autism, parents and doctors must also weigh the potential negative side effects against the potential benefits drug companies tout.

In her April 28, 2014, article “Risperidone use in children carries heavy risks” published online by Simons Foundation Autism Research Initiative, Emily Anthes clearly addresses the risks and benefits of the drug risperidone, which is commonly prescribed to children with autism who display aggressive behaviors. Not only is risperidone the first drug the FDA approved for use in children with autism, but it is also the most widely used drug for children with autism. Originally, risperidone was used to treat schizophrenia, and the FDA approved this use in 1993. In 2006, the FDA also approved risperidone for the treatment of irritability in children with autism ages 5-16.

In 2002, clinical trials of children with autism aged 5-17 taking risperidone showed 57% reduction in tantrums, self-injurious behaviors, and aggression. Of those who responded favorably to the medication, 70% continued to show improvements after taking it for six months. However, not all children show this positive response to risperidone, and the negative behaviors return when the medication is discontinued. Moreover, the drug does not improve many behaviors associated with autism.

Additionally, risperidone has been associated with negative side effects, including drowsiness, significant weight gain, and hormonal changes. Specifically, children taking risperidone gain an average of six pounds within eight weeks of taking the drug. This weight gain carries even more concern in that it may not be temporary. Jeremy Veenstra-VanderWeele, the medical director of the Treatment and Research Institute for Autism Spectrum Disorders at Vanderbilt University in Nashville, Tennessee, notes, “You may change the body shape or body fat distribution in a child for the rest of their life.” This weight gain may also lead to other more serious metabolic issues.

A less common side effect, tardive dyskinesia, which manifests as involuntary repetitive movements, such as facial grimaces, tongue thrusting, and finger movements, has also been associated with risperidone. If the drug is stopped early enough, these movements may cease. However, even if the drug causing the movement is discontinued, the tardive dyskinesia may become worse and may be permanent.

Along with problems associated with weight gain, risperidone can cause hormonal issues in children taking the drug because it increases prolactin levels. Secreted by the pituitary gland, prolactin, if increased, can cause sexual dysfunction, lactation in girls, and gynecomastia, or swelling of breast tissue, in males. In fact, in Feburary 2015, a Philadelphia jury awarded a twenty-year-old man with autism $2.5 million after he developed size 46DD breasts as a side effect from taking risperidone from 2002-2006.

By the end of 2013, 500 plaintiffs had filed personal injury lawsuits against Johnson and Johnson, the parent company of Janssen Pharmaceuticals, who produces risperidone. In November of 2013, Johnson and Johnson agreed to pay $2.2 billion to resolve claims that they had improperly marketed Risperdal and two other drugs as having unproven benefits for elderly patients with dementia and children with autism.

In her article “Pharma company may have downplayed side effects of autism drug” published online August 20, 2015, by the Simons Foundation Autism Research Initiative, Jessica Wright addresses these serious side effects associated with risperidone. In a lawsuit filed against Janssen Pharmaceuticals, evidence has been presented that a 2003 study omitted data regarding the side effects of risperidone. Specifically, the study concluded that there was no link between the increased prolactin in boys and the development of gynecomastia.

This 2003 study of 700 children taking risperidone used data to show that prolactin increased the first two months on risperidone but returned to normal levels after five months on the drug. However, an earlier manuscript of this research has been found that includes two data tables that were not included in the published version of the research. This conveniently excluded data that shows a correlation between increased prolactin and side effects was never provided to the FDA for obvious reasons. This failure to disclose known serious side effects not only suggests deceit on the part of the drug company, but revealing this information also makes them open to scrutiny and lawsuits by those damaged by the drug.

On a personal level, when Alex first exhibited aggressive behaviors in his teens, two doctors recommended that he take risperidone. However, I had done enough research to know the potential side effects and decided that the benefits were not worth the risks. For one thing, he was difficult enough to manage, and adding more weight to him would make him even harder to handle during a meltdown. Moreover, my mother’s instinct made me very leery about the issue of tardive dyskinesia and the potential permanent damage the drug could do in that respect. Therefore, I tore up the prescription one doctor gave us for risperidone and politely asked for a different medication from the other doctor, who understood my concerns and complied with my request.

When Alex was hospitalized for extreme anxiety and aggression, he was given one dose of risperidone, probably because it is the drug of choice in treating aggression in autism. However, one of the nurses told me that after just that one dose, he began to exhibit concerning side effects that appeared to be tardive dyskinesia, so they stopped the drug immediately. Thankfully, he was under the observation of trained medical professionals who recognized this serious side effect and knew that he should never take risperidone again. My mother’s instinct, which I believe is God guiding me, was correct about risperidone’s potential negative effect upon Alex, and fortunately, he did not suffer any obvious permanent damage from that single dose.

Certainly, medications can effectively treat symptoms associated with autism. For our family, the right medications have helped Alex tremendously and have significantly improved our lives as they have eased Alex’s anxiety and aggression. However, parents must do their own research on medications and never trust doctors and drug companies blindly. Doctors may not know all the side effects of psychiatric medications, and drug companies may omit crucial data to increase their profits. Moreover, more research needs to be done regarding developing medications that may better address negative behaviors in autism and have fewer serious side effects. As parents we must help our children cope effectively with a world that overwhelms them, and we must find methods that, indeed, follow the guiding principle: “First, do no harm.”

“Is there no medicine in Gilead? Is there no physician there? Why is there no healing for the wounds of my people?” Jeremiah 8:22

Sunday, August 23, 2015

Behavior as Communication in Autism

Last Sunday, Salon posted a fascinating online article about autism entitled “We have autism all wrong: The radical new approach we need to understand and treat it.” [To read this article, please click here.] Written by Dr. Barry Prizant, a speech and language pathologist who has extensive experience in working with people with autism, this article proposes that rather than stopping behaviors commonly found in autism, the reasons behind these behaviors should be addressed instead.

Dr. Prizant notes that autism is usually diagnosed based upon observation of various “autistic behaviors,” such as hand flapping, echolalia, and rocking, but no one bothers to ask why the child is engaging in these behaviors. As he points out, the logic becomes circular: “Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.” Similarly, I once asked Alex’s behavioral therapist why he, like other adults with autism I have observed, often holds his hands awkwardly bent at the wrist and close to his chest. She told me that it’s just a common behavior seen in adults with autism. I suspect that he does this because it makes him feel secure, a standing fetal position that instinctively puts his hands where he can protect his chest and head.

Additionally, Dr. Prizant states, “Instead of seeking to understand the child’s perspective and experience, they [caregivers] simply try to manage the behavior.” He further asserts, “This way of understanding and supporting people with autism is sorely lacking…It neglects the importance of listening, paying close attention to what the person is trying to tell us, whether through speech or patterns of behavior.” Or, as behavioral therapists tell parents of children with autism: behavior is communication.

Later in the article, Dr. Prizant goes on to explain that because of differences in their neurological systems, people with autism must deal with dysregulation challenges. He notes that people with autism “experience more feelings of discomfort, anxiety, and confusion than others” and “have more difficulty learning how to cope with these feelings and challenges.” These challenges occur because of communication issues and difficulties in dealing with change. Sensory and medical issues also contribute to the dysregulation problems people with autism face.

As Dr. Prizant notes, all people face stressful situations in life that make us feel dysregulated, but people with autism are more sensitive to these circumstances and often do not possess the skills needed to cope with these issues. For example, he describes children with autism who cover their ears and run screaming when they hear a loud noise, overwhelmed by the sensory overload. Other times, the reason behind the behavior may be less obvious, but he urges parents and therapists to try to find the motivation behind the child’s behavior. He states: “In most cases, the child can’t explain the behavior in words, so it’s up to those close to him to sort through the clues.”

With Alex, we have learned to help him express his emotions so that we can better help him cope. For example, his hands may shake for a variety of reasons. Consequently, we will ask him if he’s cold, nervous, excited, or just shaky. He has become very good at explaining the reason behind his trembling hands, and we can help him once we know the reason by getting him a blanket, reassuring him, sharing his joy, or reminding him that his medications just make his hands a little jittery at times. We have also discovered that when he grabs our arms, this is not an act of aggression, but a cry for help instead. He needs something but is so upset that he cannot express it verbally. Rather than addressing the behavior, we have learned to acknowledge that he’s upset and try to get to the bottom of whatever has caused him to reach out to us for help. Once we know the source of his upset, we can reassure him that we will help him cope.

Last week, one of my students who has autism approached me and suddenly moved her hand toward my head. Having seen Alex do similar motions, I took her hand gently in mine, moved it down into a friendly handshake, and told her that I was happy to see her. She smiled and told me that my necklace was pretty, which was probably the reason why she had impulsively moved her hand toward me; she wanted to touch my necklace because she liked it. Instead of reprimanding her for violating personal space, I was able to help make her behavior a socially acceptable one—a grab for an intriguing object that could have been perceived as threatening instead became a respectful handshake. My experience with Alex had taught me how to respond in a way that was understanding of her needs.

To conclude his article, Dr. Prizant explains, “Most of the behaviors commonly labeled ‘autistic behaviors’ aren’t actually deficits at all. They’re strategies the person uses to feel better regulated emotionally. In other words, in many cases they’re strengths.” Specifically, some behaviors not only signal that they are overwhelmed, but these actions also help to calm them by helping them gain control of the situation that feels out of control. Furthermore, he points out that all people have routines and methods to calm themselves in stressful situations, but children with autism may be discouraged from doing these behaviors, such as rocking or flapping. For example, I hum when I’m nervous, but I know that it’s not socially acceptable to do this in certain situations. Alex, on the other hand, will ask a question repeatedly when he is nervous, not caring how others perceive him. Rather than telling him to quit asking the question, we repeat his question so that he knows we have heard his concern, and we give him the opportunity to answer his own question. Realizing that he already knows the answer, Alex becomes reassured that everything is all right and stops repeating the question.

As an autism mom, I thoroughly appreciate Dr. Prizant’s insights into why people with autism behave the way they do. Because their nervous systems are especially sensitive to sensory issues and anxiety and because they often lack the verbal skills needed to express their feelings, they behave in untypical ways to communicate their emotions. Those who deal with people who have autism need to remember that they are doing the best they can to cope in a world that overwhelms them. Moreover, we need to figure out the reasons for their behavior so that we can help them cope and communicate their emotions. While we may not always understand their behavior, we certainly need to be understanding of them, showing compassion for their struggles and reassuring them that we truly care.

“Reflect on what I am saying, for the Lord will give you insight into all this.” II Timothy 2:7

Sunday, August 16, 2015

The Autism Epidemic

This week a provocative article regarding autism appeared online and has caused some controversy. In his article “Is There Really an ‘Autism Epidemic’?” writer Cody Fenwick challenges the assertion that autism is increasing at a staggering rate. Although he mentions the statistics usually cited to show that cases of autism have significantly increased in recent years, he proposes that autism is no more prevalent than it ever was. Instead, he believes that different criteria are being used to describe autism, and better diagnosis of autism along with more available resources have led to more people “experiencing ASD symptoms.”

To support his argument, he mentions research aligning with his belief that autism rates have not increased in recent years. Specifically, he cites a single study in Australia regarding the “global burden” of autism spectrum disorders that determined there was no change in American autism rates from 1990-2010 or around the world, for that matter. In reference to increased rates of autism diagnosis, he summarizes a California study that found higher rates of autism diagnosis in regions that offered diagnostic resources. This same study noted that children who moved to regions that offered better diagnostic resources had better chances of receiving a diagnosis of autism. Obviously, this makes sense: parents take their children to experts when they have symptoms that require evaluation and diagnosis. Moreover, some parents move their families closer to these autism experts so that their children can receive the best possible care. This scenario would seem to refute, rather than support, the author’s point that autism is not an epidemic.

In addition, he refers to “significant research”––but never cites the sources––regarding the increased diagnosis of autism. According to this nebulous body of study, the reason why the occurrence of autism seems to be increasing is because people have more access to mental health services, more incentives for having an autism diagnosis, and greater knowledge of autism. Fenwick asserts: “…high rates of ASD are due to more available resources, rather than an increase in people experiencing ASD symptoms.”

If Fenwick had talked to any autism parents, they could tell him that none of these reasons are true. Parents often wait months or even years to get services for their children with autism because there are simply not enough available resources, primarily because the number of children with autism has increased more rapidly than the availability of professionals who work with them. As for the “incentives” of having an autism diagnosis, this is simply ludicrous. Autism parents know that a diagnosis of autism often means discrimination and having to fight insurance companies to provide needed services. Moreover, if a greater knowledge of autism truly exists, there would be no need for autism awareness.

Another argument that Fenwick makes is that autism is simply a reclassification of the diagnosis of intellectual disability. He supports this position by noting that while the diagnosis of autism has increased (yet there is no autism epidemic, according to him), the diagnosis of intellectual disability has decreased. He suggests that many people who would have been labeled as having an intellectual disability are now classified as having autism, noting that the autism spectrum is diverse and has wide criteria for diagnosis. As anyone who studies statistics knows, “Correlation does not imply causation,” and the decline in those with intellectual disabilities has a more likely cause. According to recent statistics, an estimated 92% of pregnancies in which Down syndrome is diagnosed are terminated in abortion. Tragically, these children who would have been diagnosed as having intellectual disability are being eliminated from society before they can be born, and this is more likely the reason for fewer children receiving the intellectual disability diagnosis.

On the other end of the spectrum, he states that many people with high functioning autism probably went undiagnosed in the past. However, my more than thirty years of experience as a teacher tells me this is not true. Autism, even the high functioning version, is not something that could be ignored. The hallmarks of impaired language and social skills and behavior could not simply be swept under the rug. The reason more children are being diagnosed with autism is because autism rates are increasing; it’s that simple.

While Fenwick attempts to make his point that increased diagnosis of ASD does not mean more people have autism than before, he explains that the term “autism epidemic” should be avoided because classifying autism as a disease or plague is “hurtful and demeaning” to people with autism who view the condition as integral to their identity. Whether autism is a disorder, a disability, or a disease, it clearly impacts people’s lives in negative ways, impairing their language and social skills. The term “autism epidemic” is not intended to diminish those who have autism; instead, using this term may help bring attention to the difficulties they face on a daily basis.

Although the author concludes his argument that autism is not an epidemic by stating the “need to avoid making unwarranted claims to gain attention for our cause,” he never explains why he personally views autism as “our cause.” However, he also points out the need for better mental health services and research and even concedes that the current research on autism rates is “not decisive,” noting that there could be an actual increase in cases of ASD.

If, indeed, autism rates are increasing—and I believe they are, based upon my research and experience––attention is needed so that more research is done regarding how to help people with autism to allow them to get better support and services than are currently available. To quibble over the semantics of the term “epidemic” wastes more time that could be spent finding ways to help people with autism. For the record, however, I do believe there is an autism epidemic that if not addressed immediately will overwhelm our medical care, education system, and economic resources. With not enough support systems in place to handle this epidemic, those who need help will suffer. Our children with autism deserve much better.

“For He will rescue you from every trap and protect you from deadly disease.” Psalm 91:3

Sunday, August 9, 2015

Autism Mom Guilt Bingo

This week, my sister-in-law posted a funny graphic on Facebook about mom guilt. Entitled “Mom Guilt Bingo,” it first appeared about a year ago on the blog Sweet T Makes Three. What makes this bingo game so amusing is that it is so true: we moms frequently second guess ourselves when raising our children and feel bad about our mistakes. Of course, some of the items included in the Mom Guilt Bingo are tongue-in-cheek, such as “High Fructose Corn Syrup in the House” and “Birthday Party Wasn’t Pinterest Worthy.” However, others squarely address those issues where we feel we’re not doing enough as our children’s mothers.

This week, I felt my own pangs of mom guilt as I eagerly prepared to start teaching another school year later this month. As I bought school supplies, revised syllabi for my classes, photocopied handouts, and decorated my classroom in anticipation of a new group of students, I felt that yearly pang of guilt about actually enjoying a job that takes me away from Alex every weekday morning. Mind you, he’s twenty-three years old, supervised by his beloved father while I’m away, and sleeping some of the time I’m at work, but I still worry that somehow my absence is detrimental to him.

While probably all mothers feel guilt from time to time, autism moms feel guilt that typical moms do not. We wonder whether we have done something wrong to cause our children’s autism—probably going back to the now debunked and completely ridiculous “refrigerator mother” theory that our supposed coldness impaired our children’s social skills. Moreover, we worry whether we are doing enough to make our children better. With those perceived shortcomings in mind, I offer my version of Autism Mom Guilt Bingo.

B is for Borrowed—Here are the squares I borrowed from the original Mom Guilt Bingo that also apply to autism moms:


Incomplete Baby Book

Work Outside the Home

Hiding in the Bathroom

Used TV as a Babysitter

I is for Imagined causes of child’s autism—what we may have done during their early development, according to “research”:

Got sick during third trimester

Wore nail polish while pregnant

Passed along autoimmune tendencies

Too many ultrasounds during pregnancy


N is for Need to do this to keep child happy and mom sane:

Allowed child to rewind Disney videos over and over

Put child in GoodNights in the daytime when too big for diapers and pull-ups

Told child white lies

Let child slam doors and turn on and off lights in nightly routine

Engaged in routine of saying “Bye-bye” repeatedly during credits of television shows

G is for Gosh, I’m not proud of this:

Wanted to poke out eyes of people who stare at my kid

Jealous of parents who have typical kids

Made Rain Man jokes

Considered making T shirts that read: “I’m Autistic, What’s Your Excuse?”

Blamed, begged, and bargained with God

O is for Overloaded with toxins unknowingly:

Cooked in aluminum and nonstick pans

Built deck with (arsenic) treated lumber

Followed (thimerosal-containing) vaccine schedule faithfully

Gave Tylenol after shots

Child chewed on his flame-retardant pajamas

No one said that motherhood would be an easy job, and autism adds a whole new dimension of struggles to raising a child. Being human, we moms make mistakes, often unintentionally, and we pray that our shortcomings will not harm our children. Thankfully, we can rely upon God’s forgiveness when we fall short, and our kids are more resilient than we think they are. I’m especially blessed that Alex never holds a grudge; when I tell him I’m sorry, he readily accepts my apology and moves forward. (Occasionally when he’s OCD, he will remind me, “Mommy made a mistake in 1996,” but usually he doesn’t hold too much against me.) Without a doubt, I am the one who holds me accountable for my mistakes, and guilt ensues. However, I need to remember that if God and Alex can forgive me, then I need to forgive myself and let go of the guilt. Oh, and one of these days, I will finish Alex’s baby book, maybe someday after I retire from my job.

“You forgave the guilt of Your people––yes, You covered all their sins.” Psalm 85:2

Sunday, August 2, 2015

Request List

Because Alex has made significant progress in the past several months, Ed and I asked him two months ago to make a list of the things he’d like to do over the summer, confident that he would be able to behave himself well enough to do these requested activities. Knowing Alex as well as we do, we were also certain that his list would be reasonable and, therefore, manageable. Basically, he made the following list:

1. Go to different restaurants.
2. Go to the county fair.
3. Go to concerts in the park.
4. Go to the farmers’ market.
5. Go to Zao Island (a local family arcade and miniature golf course).
6. Go to Dairy Queen.
7. Go to the movies.
8. Play in the sprinkler.

With two weeks left before Ed and I return to our teaching jobs, marking the end of our summer, we have been able to fulfill all of the requests on Alex’s list. This summer, he has enjoyed dining at Round the Clock family restaurant (in Valparaiso and Chesterton), Culver’s hamburger place with gluten-free buns, Panera Bread for salads (inside and out on their patio), Fazoli’s Italian restaurant, Schoop’s fifties-style diner (breakfast and dinner), Suzy’s CafĂ©, The Port fifties-style drive-in, Tao Chen’s Chinese restaurant, Bob Evans family restaurant, and Kelsey’s Steak House. Despite the limitations of his gluten-free and dairy-free diet, we have found items on the menu that he can eat, and he happily devours whatever is put in front of him. Most importantly, he demonstrates that he has learned the manners we have been teaching him, thanking the people who wait on him and being pleasant and patient.

On Monday evening, a perfect summer night with comfortable temperatures, we took him to our county fair, something he looks forward to visiting every year. Along with visiting the horse and cattle barns, we looked at the 4-H exhibits, enjoyed an excellent concert by country musician John Berry, and walked around the carnival midway. Whenever we go places, Alex wants to know what there will be to eat and drink, but most food fare at the fair doesn’t fit within his dietary limitations. However, he did enjoy a root beer float minus the float and strawberry lemonade. Also, he wanted to continue his annual fair tradition by playing the duck pond game, where he chose a red sock monkey stuffed animal, whom he named Alan (after his favorite country singer Alan Jackson) for his prize. Although he told us he had “tired feet,” by the end of the evening, he rated his visit to the fair “one hundred percent.”

On Thursday evening, we took him to a concert in our downtown park, the last one of the summer series, where we had already seen the local community band, a country band, and a rhythm and blues group. The last concert was a pop group who were not Ed’s taste in music, but Alex and I found them entertaining. Of course, Alex also liked having something to eat and drink as he bobbed his head to the music.

This summer, we also took him to the Saturday farmers’ market here in town and the European Market in nearby Chesterton. Even though these were on his request list, Alex seemed more interested in walking as fast as he could past the displays instead of actually shopping. In fact, he reminded me of Chevy Chase’s character Clark Griswold in the movie Vacation at the Grand Canyon, nodding his head and moving along, just to be done. Consequently, we bought nothing, but we could at least check off another item on Alex’s list.

Also, we took him to Zao Island, but the miniature golf course was extremely crowded. Even though Alex is much more patient than he used to be, we felt that the wait would be too much for all of us. Perhaps we will try again before summer is over; I always enjoy Ed telling Alex repeatedly to look at the golf ball because Alex is looking everywhere but at the ball. Nonetheless, Alex enjoyed playing the Wheel of Fortune video game and the NASCAR simulation racing game, where he drives Dale Earnhart Junior’s car but drives recklessly, running into walls and other cars, making us glad that he does not have a driver’s license. Even though his favorite video game, Deal or No Deal, was broken, he still smiled the entire time. I think we definitely need to return to Zao Island for a round of miniature golf and a try at Deal or No Deal before summer ends.

For years we used evening trips to Dairy Queen as a reward for good behavior in the summertime. Even though Alex’s diet limits his options on the Dairy Queen menu, he likes their Arctic Rush slushes and typically keeps a mental list in which he rotates the flavors he likes: cherry, lemon-lime, and strawberry-kiwi. Although blue raspberry is another option, he never chooses it because he doesn’t like the “blue lips and blue tongue” that is inevitable after drinking one. This summer, Alex has strayed from his usual slushes, choosing instead to have their gluten-free french fries with root beer to drink. Even though we no longer have to bribe him with trips to Dairy Queen, he still enjoys frequent visits there for a snack or dessert.

Because going to the movies can be overwhelming with the big screen, loud volume, and crowds, we have avoided taking Alex to the movie theater for fear he would have sensory overload. In fact, the last time we took him to the movies was before we knew had had autism; we went to see Toy Story when he was three years old. Although he was fine then, we never took him to movies again for fear that he might get upset. Moreover, he never really seemed very interested in anything that had a plot. Recently, though, he has shown greater patience and enjoyment in following the plot of television shows and movies on t.v., so we thought we’d give this another try. When he asked to go to the movies, specifically to see the new Pixar movie Inside Out, which he’d seen advertised on television, we thought this was the perfect time to take him. Once again, he showed how much progress he’s made, sitting calmly and enjoying the movie, never complaining about how long he had to wait or asking when he could go home.

His patience also paid off as he waited for the final item on his list request list to be fulfilled. After rainy and unseasonably cool weather this summer delayed his sprinkler runs, he finally was able to enjoy sprinkler time during some hot days in the past two weeks. Even though most young men his age would not think hanging out in the backyard sprinkler was something cool to do, Alex sees this as a fun summertime activity that he’s anticipated every year. As we watch him enjoy that simple pleasure, we are reminded that even though he’s come so far, he’s still basically a little boy at heart.

As summer comes to an end, I think all three of us can easily say that this has been our best summer ever. Alex has been able to do all the things he wanted to do, and Ed and I have been thankful and happy to watch his delight as he engaged in these common activities that brought him such joy. God has truly blessed us, and we are grateful.

“Listen to my voice in the morning, Lord. Each morning I bring my requests to You and wait expectantly.” Psalm 5:3

Sunday, July 26, 2015

Setbacks and Stepping Stones

With autism, progress doesn’t always mean moving forward. Sometimes setbacks occur that teach us so that we are ready for the stepping stones that lead us toward our goals. In January, Alex began attending a day program for adults with disabilities where he has been working one-on-one with a staff person to learn computer skills. Because he has had behavioral issues in the past, they requested that Ed stay in case any problems arose. Although Alex has made significant improvements in his behavior, we understood their concerns and were willing to do whatever was needed to make sure Alex was successful. Frankly, we were unsure how he would adapt to the new environment, but he made us proud by handling himself very well. Once they were confident that he could behave himself, they decided that Ed could simply drop him off and pick him up at the program and did not need to stay for the entire session. Moreover, they increased his sessions from once a week to twice a week. Despite various situations that in the past would have thrown Alex for a loop, such as a broken computer printer, a fire drill, changes in the staff who worked with him, the internet being down, etc., he never seemed to get upset and rolled with whatever came his way there.

In fact, he seemed to handle situations so well that they suggested that he stay for lunch after his computer classes so that he could socialize with the other clients, who are about his age. When this new schedule began last month, we were again uncertain as to how Alex would adapt, but he enjoyed being with other people and seemed to be following the rules. All of the feedback we were given indicated that he was doing very well, and we were delighted that he had the opportunity to learn computer skills and to interact with his peers.

While we thought everything was going amazingly well since we had only heard positive reports, we found out that they were not happy with him because he had been resetting the microwave oven. Because of his OCD, Alex needs for the world to be just so, which means that he always closes cabinet doors and drawers and that he needs for clocks to be accurate. Also, he believes that if a microwave is stopped midway through the cooking cycle, it should be cleared back to the original clock setting. Apparently, someone at the day program was stopping the microwave without clearing the cooking time, and Alex saw those flashing lights as an invitation for him to fix a problem. Clearly, he needs to respect other people’s property, but I’m sure he intended his actions to be helpful: someone forgot to reset the microwave, and he was happy to remedy the problem so that everyone could see the clock again. Moreover, we didn’t know he was doing this until they told his behavior therapist when she checked with them regarding his progress, and she relayed the information to us. Once we were alerted to the circumstances, we talked to Alex and told him that he was not to touch their microwave because it was not his. He seemed to understand, but he probably would need to be reminded since his need for clock accuracy is so strong.

In addition, we found out that he had been imitating other people’s voices, something he does when he likes a person. He truly does not intend to mock the person; in this case, he copies them because he admires them. Again, we reinforced with him that he cannot imitate people because it’s rude, and he seemed to understand. We also discovered that he had been invading other people’s personal space by standing too close to them or by trying to touch them, which we know he cannot do, especially since he is so big that he can appear threatening. Once again, we discussed this issue at length with him once we were aware of the problem, and Alex seemed to take this concern to heart.

A few weeks ago, after six months of good behavior, Alex became upset and grabbed his staff person, which was unacceptable, and they called Ed to come and get him immediately. Right away, Alex knew that he had handled the situation wrong and expressed remorse for his actions. Also, I discovered that he had thrush, the yeast overgrowth in his mouth that has plagued him repeatedly for more than three years and causes him to be extremely irritable, which probably caused him to become agitated. After much communication between their staff, Alex’s case manager, our behavior therapist, and us, they finally decided that Alex could continue but with some restrictions, including having Ed stay part of the time in case Alex had any issues. Again, we understood their concerns and complied with their requests, and we emphasized with Alex the need to behave himself.

Since then, he has apparently been following the rules, but he has also been a bit anxious, seemingly worried that he will make a mistake. In fact, he asks us after every session if he did anything bad because he truly wants to do a good job. Last week, the director told Ed that Alex had a bad morning, but when he asked Alex’s staff member what had happened, she indicated that he had been clearing the microwave again and dismissed it as rather minor. As teachers, Ed and I obviously understand the need for students to follow the rules, but we also value accurate and specific feedback. As parents, we will do everything in our power to make Alex the best that he can be, but we will also lovingly help him to do better when he falls short. Alex knows that he can always count on us, no matter what, and that support gives him the confidence to try again.

While I wish that Alex would always follow the rules and behave perfectly, realistically I know that he will make mistakes, and we will help him learn to do better the next time. Just as Alex is learning from these experiences, I am also learning valuable lessons that I hope will make me better as a person, parent, and teacher. Because I appreciate that Alex’s behavior therapist and music therapist always emphasize his strengths, even when noting his weaknesses, I know how important being positive is when I deal with my students. Moreover, Alex’s therapists move on after he makes a mistake, knowing that he will stumble at times, and they don’t dwell on what he did wrong, but instead praise how he recovered nicely afterward. Finally, the compassion and understanding that they show Alex and us as his parents, knowing that we are doing our best under the difficulties autism presents, strengthens and helps us move forward so that Alex can continue making progress. As the new school year approaches, I know what kind of teacher I want to be—one who knows that my students will stumble from time to time, but who is there with a helping hand to lead them to the next step, patiently encouraging them along the way and praising their efforts so that they want to keep learning and trying. Just as Alex continues to learn, I realize that I am still learning, too, making mistakes and making amends, thankful for all the lessons he teaches me along the way.

“Though they stumble, they will never fall, for the Lord holds them by the hand.” Psalm 37:24

Sunday, July 19, 2015

The Calm After the Storm

Sometimes the signs are so subtle, they would be easy to miss. Nonetheless, we celebrate every step of progress we see Alex make, knowing that he is, indeed, getting better. This week some seemingly small incidents reminded us just how far he has come, especially in learning how to remain calm in any situation.

On Thursday morning, Alex awakened shaking. Shaking is not uncommon for Alex and has various triggers. For example, the lithium he takes to stabilize his mood can cause occasional tremors in his hands. Also, he has hypothyroidism that makes him more sensitive to being cold, and he sometimes shakes when he feels cold. In addition, when he’s excited or ecstatic about something, he will shudder with joy, as though he cannot contain the happiness inside him. On that morning, however, the shaking was not caused by any of those reasons. After looking at the expression on his face, I could tell that he was having a panic attack, and excess adrenaline was causing his entire body to shake. Often panic attacks will send him into the fight of the “fight or flight” mode, and we knew we had to approach him gently so that he would not become aggressive.

As we tried to soothe him, he told us that he was upset because he had made a mistake. Knowing we shouldn’t push him too hard or argue with him, we told him we understood, and we respected his decision to stay home from his computer class. Since he loves going to computer class, we knew he must have really not felt well in that he was deciding not to go. We asked him if he wanted us to stay with him until he felt better or if he’d rather be alone, and he told us he just wanted to be left alone. His ability to make rational decisions and remain reasonably calm without escalating to yelling, throwing things, or becoming aggressive demonstrated a significant and welcome change in his handling of anxiety. After reassuring him that we were there if he needed us, we honored his request to be left alone. Fortunately, he also understood my need to check on him regularly and never became upset when I asked him if he was feeling better.

A little later, I asked him whether or not he felt well enough to go to music therapy that afternoon. Although he was less anxious, he was still a bit jittery. However, he decided that he wanted to go to music therapy and began getting ready to go. I asked him whether he needed a dose or even a half dose of Valium, which his doctor has prescribed for panic attacks, to make him feel calmer, but he was confident that he didn’t need the medication to cope with his anxiety. When we arrived at his music therapist’s office, I told him that Alex had been anxious that morning but insisted that he wanted to come to music. His therapist told him that he admired his dedication and reassured Alex that if he wasn’t feeling well, they could cut the session short so that he could go home and relax. Sitting in the waiting room, I wondered if Alex would make it through the entire session, but he did, emerging smiling at the end. His therapist told me that Alex had done a great job and seemed to be calm. In fact, I sensed that the session had made him even calmer, perhaps doing a better job than the medication might have. Clearly, Alex knew what he needed to make himself feel better, and he was able to communicate those needs to us instead of resorting to negative behaviors, which is a tremendous blessing.

Later that evening, we were able to go out to a nice restaurant as a family to celebrate our wedding anniversary, and Alex showed no signs of the anxiety that had bothered him in the morning. He thoroughly enjoyed his dinner, especially since it was his favorite food––shrimp––and used nice table manners. In addition, he practiced social skills by engaging in conversation, asking appropriate questions, and never interrupting. Even when another waitress came over to engage him in conversation (We learned that she had worked with adults with disabilities.), he answered her questions nicely. Clearly, all of the skills that Alex's therapists and we have been teaching him are making an impact.

Yesterday, we again saw how well Alex has learned to cope in situations that previously might have upset him. We took him to his cousin’s graduation party, where there were lots of people gathered under a tent in mid-90 degree heat. My mom noticed that Alex was shaking, but when I asked him whether he was nervous or excited (knowing that he certainly wasn’t cold), he shuddered and told me that he was excited, meaning that he was happy to be there. Even as a storm loomed closer with thunder and lightening, which used to terrify Alex, he remained calm and pleasant.

With the storm approaching, we decided to take him to a nearby restaurant for dinner. Just as we walked in the door, rain began pouring down, and winds began whipping around. Suddenly, the electricity in the restaurant went out before they could take our order. Even though we were basically stuck there since we didn’t want to go out in the storm, Alex didn’t get upset about the power outage or the storm. In fact, he seemed to see the whole situation as an adventure, commenting, “It’s very rare for the power to go out. The odds are about one in one hundred.” He maintained that calm, waiting patiently for the storm to pass and the power to return, and then happily enjoyed his dinner once the electricity returned and allowed his food to be prepared. Based on past experiences where changes of plans could send Alex into a panic, Ed and I kept watching him to make sure he wasn’t getting agitated, and we were amazed and pleased by how well he handled the situation. Once again, he showed us how much better he is now.

While many people would take for granted a young adult’s ability to cope with a panic attack, a strong storm, or a power outage, let alone to make pleasant conversation, we know how significant these milestones are for Alex, and we thank God for making him better. Learning to handle social situations and to deal with anxiety has not come easily for him, yet he has worked hard so that he can enjoy typical situations, such as going out to a restaurant, or even how to cope in rare circumstances, such as when the electricity suddenly goes out. Essentially, he is showing that he can deal with the storms of life­­––whether internal or external––so that he can enjoy all that life has to offer.

“Then they cried out to the Lord in their trouble, and He brought them out of their distress. He stilled the storm to a whisper; the waves of the sea were hushed. They were glad when it grew calm, and He guided them to their desired haven.” Psalm 107:28-30