Sunday, June 9, 2019

Most Annoying Award

Last week, an article from my local newspaper, The Times of Northwest Indiana, received national attention: “Teacher mocks autistic student with ‘most annoying’ award, parent complains.” In this news report and two follow-up articles, education reporter Carley Lanich describes how a fifth grade student with nonverbal autism received a trophy inscribed with “Bailey Preparatory Academy 2018-2019 Most Annoying Male,” and she details the school district’s response to the teachers’ involvement in this unprofessional and unkind act. [To read “Teacher says she’s a scapegoat after student with autism given ‘Most Annoying’ trophy” and to access links to two previous articles on this story, please click here.]

According to The Times, on May 23, 2019, fifth graders from Bailey Preparatory Academy, a public school in Gary, Indiana, celebrated the end of the school year with a luncheon at a restaurant for teachers, students, and students’ families. This event included a “Students’ Choice Awards” ceremony where students chosen by their peers were awarded trophies for various categories. Prior to the awards ceremony, students had been given ballots prepared by two fifth grade teachers with categories and explanations of each award, such as, “Most Positive (always encouraging or motivating others).” Students were to write in the name of a female and male student for each category, and these ballots were returned to the two fifth grade teachers overseeing this event.

When the so-called award for “Most Annoying Male” trophy was given to a boy with autism, his father, Rick Castejon, was shocked but did not want to cause a scene. He explained that his son didn’t understand the meaning of the trophy and was not upset, but as a parent he questioned the school’s judgment in giving an award for this category. Moreover, he noted that another boy, who is not a special education student, received this same designation and was teased by other students when he was called forward to receive his trophy. The next day, the father contacted the school district with his understandable concerns.

Reportedly, the teachers at the awards ceremony told the parents that all of the fifth grade students had voted for the class awards, and the teachers were just there to hand out the trophies. Apparently, they were attempting to protect themselves against any fallout and placing the blame upon the students. However, the father of the boy with autism directly criticized his son’s special education teacher, who handed him the trophy, stating: “You should have protected my son no matter what. Your job should’ve been to say, ‘We’re not going to give this one out.’”

In addition to the traditional positive awards, such as “Most Scholarly,” the teachers included the grammatically incorrect “Most Funniest” and “Most Friendliest” categories on the ballot. Besides the negative “Most Annoying,” the teachers also offered “Most Sleepiest” as a grammatically incorrect and thoughtless choice for those “usually caught trying to take a nap.” Again, these teachers used poor judgment when not considering their students’ difficult home situations that may impair their sleep and make them overly tired at school.

After the initial article about the boy with autism receiving the “Most Annoying” title, this news story received national attention and public outcry for the cruel treatment of this special needs child. Readers insisted that the teachers involved at least be fired and even prosecuted for their actions. The Gary Community School Corporation, already suffering from a reputation as one of the worst school districts in the state of Indiana, immediately attempted damage control. A school spokesperson issued the following statement: “The team is working to ensure that an occurrence of this nature will never happen again.”

Initiating an internal investigation by an education attorney, the school district placed the school principal on administrative leave pending further investigation. Moreover, the special education teacher and the two fifth grade teachers responsible for the ballot and awards have been notified that their teachers’ contracts have been cancelled based upon their “inappropriate behavior” and “poor professional judgment.” In a letter from the principal, she notes the failure of these teachers to be “an acceptable role model” and to treat their students with “dignity and respect” by giving the “inappropriate awards.” The teachers have the right to appeal the decision regarding their dismissal from the district.

Although the principal and two fifth grade teachers have not issued statements to the press, the special education teacher is loudly complaining about her fate. Alexis Anderson-Harper, who has been employed with the Gary schools for fifteen years, claims that she is being unfairly targeted. She states, “I feel like my livelihood is being taken away from me.” In a rather odd analogy, she continues, “You’re playing Russian roulette with my life.”

According to Ms. Anderson-Harper, the fifth grade teachers who organized the awards ceremony are to blame because they created the students’ ballot for the awards. She simply explained the categories to her students and even decided to omit the “Most Athletic” award since none of her students participated in school sports. However, she failed to delete the “Most Annoying” category. She claims that she didn’t realize her student would receive that designation until after his name was read and she handed him the trophy at the ceremony. In her attempt to save her job and her honor, she apparently blames her colleagues and the students, never apologizing for her part in the cruelty to her student, nor expressing regret for not doing something to prevent upsetting his parents.

As a result of the national attention this news story has generated, the family of the boy with autism has received letters of support from around the country and offers of replacement trophies and scholarship funds. However, the boy’s father states that they are only accepting the kind notes they have received and are looking into having donations sent to an autism organization. He explains that he did not want to cause trouble or get teachers fired, but he just wanted someone to be held responsible.

In a society where too many trophies are handed out just for participation to prevent hurt feelings and to promote self-esteem, this story of “awarding” a trophy out of thoughtlessness and perhaps even spite raises righteous indignation. Teachers who demonstrate such poor judgment and lack of compassion should not be working with any children, let alone special needs children, and they deserve to be fired. Whether the student with autism understands the meaning behind the trophy or not, his parents do, and they certainly must be hurt by the actions of these teachers. Moreover, the regular education student who also received the “Most Annoying” designation does understand what it means and had to endure not only the negative label but also the taunting of his peers who voted for him to receive it. Hopefully, this incident will make more people, especially those who work with impressionable children and special needs students, think about how to treat people with compassion and understanding.

“You will heap burning coals of shame on their heads, and the Lord will reward you.” Proverbs 25:22

Sunday, June 2, 2019

Pleasant Plateau

For the past few weeks, every evening after Alex goes to bed, Ed will remark in a questioning way, “He’s been good all day?” When I nod and answer in the affirmative, Ed will say, “Knock wood, he’s doing really well,” and we will both rap our knuckles on the nearest wooden table. Knowing that I really shouldn’t buy into this superstitious ritual and should give proper credit, I add, “Praise God!”

Because Alex’s progress has not been a linear path as we have seen setbacks along the way, we fear speaking about the good could somehow make him regress. When he is dealing with anxiety that causes his behavior to decline, we pray mightily for change. However, when Alex is sweet and calm, as he has been lately, we worry that doing anything differently might cause an unwanted change.

For years, we have prayed for God to heal Alex. At times, frustrated by regressions and waiting, I have been jealous of those who have experienced complete healing from autism. Researching diligently, I have thought if I kept reading and praying, I could find a cure for Alex. While some children with autism have been healed by chelation therapy to remove heavy metals, vitamin B12 shots, special diets and nutritional supplements, and other methods, none of these gave us the miracle I desperately sought. Nonetheless, the efforts have been worthwhile because these interventions did make him better.

In addition, I have been frustrated that acne has left mild scars on Alex’s face, even though he cooperated with methods to treat the inflammation and never picked at his face. He also has a small bald spot left behind by a minor scalp infection, folliculitis, that we treated immediately under medical supervision. Thinking that Alex has suffered enough from the obstacles autism has presented, I hate that he has small scars as reminders of previous infections.

However, perhaps these minor flaws are evidence of healing, reminders that sickness is not a permanent state. Over time, the acne scars have faded their angry redness, and the bald spot has shrunken from the size of a silver dollar to that of a penny. I cut and comb his hair to cover the small bald spot so that no one really sees it, and the acne scars along his hairline are fading with nightly applications of Mederma scar cream and time. Most importantly, these slight imperfections don’t bother Alex a bit. The only mirror he uses is a toy mirror that softens and slightly distorts in its reflection, much like that described in I Corinthians 13:12: “Now we see things imperfectly, like puzzling reflections in a mirror…”

Nonetheless, we still battle infection and its lasting effects. Two years ago, Alex had a bad case of yeast infection in his mouth and throat that ruined his healthy and hearty appetite. While we have been praying that he would regain his love of nearly all foods, he still chooses to eat a rather limited diet. Even after the yeast infection has been controlled by weekly doses of anti-fungal medication and after working with a fantastic speech therapist to overcome sensory issues related to eating, Alex is still a picky eater, which is not uncommon in autism. However, sometimes he will surprise us and ask for a food not usually part of his chosen menu and devour it happily.

Since we have seen him overcome other issues with time, we wait expectantly for the day when he returns to his varied appetite. Furthermore, we are thankful that he has regained the weight he lost from his self-selective diet because he has cooperated with drinking nutritional non-dairy protein smoothies I make for him every evening to increase his daily calorie intake. Every week as I weigh him on our old-fashioned doctor’s scale, I say a prayer that I can push the bar a little farther to the right, and God has been faithful, as Alex has continued gaining weight at a healthy pace.

Along with gaining weight, Alex has also shown reduced anxiety lately. He’s not just content but happy, skipping through the house and grinning from ear to ear. He has once again enjoyed going places, and he’s chatty and interactive, making appropriate comments that intrigue and amuse us. For example, he nicely asked me the other day to adjust his wristwatch because “It’s too close to the armpit.” Mind you, it was just a little above his wrist, but the exaggerated description made me laugh. The professionals who work with him have also noted how well Alex is doing and have commented on how pleasant and observant he is, asking good questions. Last week, his companion came to stay with him while Ed and I enjoyed lunch at a restaurant. When we returned, she told us that he had been “perfect.” She also shared that when she asked him who was winning the baseball game he was watching on television, he told her––knowing that she’s not a fan of the sport––“The team that has the most points is winning.” She found his literal explanation amusing; he was trying to explain something he thought she didn’t know.

When we reach these pleasant plateaus where things are going smoothly and every night and day I thank God that Alex is doing so well and Ed and I knock on wood in hopes of keeping the trend going, we closely analyze circumstances to make sure nothing happens to change the peaceful existence we gratefully savor. However, sometimes things occur that we cannot control. A few weeks ago, we learned that one of the medications that helps keep Alex calm is no longer available. Despite the best efforts of a dedicated pharmacist, we cannot get that medication, so the nurse practitioner who prescribes Alex’s medications has given us a plan to wean him off that drug.

While my first instinct was to panic that this change would upset Alex and cause a setback, I had to remind myself that God sometimes shoves me forward with both hands because He has plans to move Alex into something new and better. Although I would have preferred to enjoy the pleasant plateau a bit longer, not being able to get this medication means that we must make a change. Remembering that Alex has always responded to medication reductions favorably, I prayed that this change would be equally smooth for him. As we have decreased his doses over the past few weeks, he doesn’t show any negative side effects. If anything, he actually seems even better with this medication reduction, and we pray that once we take him off completely, he will continue to do well and perhaps even get better. I have to believe that God was showing us that Alex no longer needed this medication because the weaning process has gone so well, and Alex continues to be calm and good natured.

Perhaps healing looks different than I had imagined. Certainly God’s ways and plans are better than mine. Maybe God reminds me that all my searching for a cure is not nearly as important as trusting Him to make Alex better. Definitely, I have witnessed His hand in our lives, guiding us and healing Alex in unexpected ways that make us know He was responsible. For us, healing and progress have rarely been the sudden and dramatic changes I prayed for and expected, but instead the culmination of small signs that reveal God has been there all along. Knock wood and praise God!

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

Sunday, May 19, 2019

Connections Between the Brain and Heart in Autism

Recently, two interesting research summary articles published online at Spectrum indicate that children and adults with autism display characteristic differences in heart rates, suggesting the autonomic nervous systems of their brains also function differently. In “Nerves that control heart rate may contribute to autism,” published February 19, 2019, Nicholette Zeliadt describes contrasts between heart rate changes in typical children and those with autism. [To read this article, please click here.]

Referencing “Developmental trajectories of autonomic functioning in autism from birth to early childhood,” published March 2019, in Biological Psychology, this Spectrum article explains research done at Brown University in the United States. [To read this research article, please click here.] Under the direction of Stephen Sheinkopf, associate professor of psychiatry and human behavior, researchers studied 118 children from ages one month to six years by measuring their heart and breathing rates. Of this group, 12 had autism, and the other 106 did not have autism. They were assessed every 6-12 months.

Normally, a person’s heart rate increases when inhaling and decreases when exhaling, a condition known as respiratory sinus arrhythmia (RSA). The autonomic nervous system controls these slight changes. These changes in breathing and heart rate are also linked to regulating emotions and paying attention to social cues, which are often impaired in autism.

The researchers found that all of the children showed similarly decreasing heart rate, which occurs over time with normal development. However, the children with autism were slower than their typical peers to develop the normal fluctuation of heart rate that occurs with breathing. Moreover, this phenomenon was most obvious after 18 months of age when behavioral symptoms of autism often emerge. By the age of 6, children with autism catch up with their typical peers in this trait (RSA) and demonstrate similar fluctuation of heart rate with breathing.

After observing the differences in heart rates and breathing between typical children and those with autism, researchers concluded, “RSA is a marker of functional status in autism rather than a cause of social deficits.” They suggest that the impairment of the autonomic nervous system occurs when autistic behaviors appear. Moreover, they note that children with autism have issues with physiological regulation––such as breathing and heart rate––that develop over time. Because this research only involved children who were exposed to drugs before birth, the researchers plan to study other groups of children to see if heart rate and breathing differences occur more widely.

In another recent Spectrum article, published May 17, 2019, and titled “Nerves that control heart rate may be offbeat in autistic adults,” Jessica Wright describes similar research involving adults. [To read this article, please click here.] She summarizes an article, “Reduced heart rate variability in adults with autism spectrum disorder,” published in Autism Research on April 10, 2019. [To read this research, please click here.]

Under the direction of Adam Guastella, professor of child and youth mental health at the University of Sydney in Australia, researchers examined resting heartbeats of 110 adults aged 16-41. Half of the participants had autism, and the other half included typical adults. All of the people in the study had no known heart conditions, and none of them were taking heart medications.

Usually, people’s resting heartbeat varies, showing flexibility and readiness to respond to environmental changes. However, researchers discovered that in adults with autism, the resting heart rate rarely varied. Moreover, those with autism had a higher baseline heart rate than the typical people. The lack of change in heart rate suggests issues with the autonomic nervous system responsible for reacting to social stimuli as well as heart rate and breathing. Researchers note that these results may explain issues with social skills common in autism as well as heart problems that can lead to early death in people with autism.

Of the participants in the study who had autism, half of them were taking medications, specifically antidepressants and antipsychotics. However, there was no difference in the heart rates between the adults with autism taking medications and those with autism who were not taking medications. Nonetheless, researchers indicate the need for further study to examine the impact of medications upon those with autism.

While both of these research studies indicate connections between heart rates, the autonomic nervous system, and autism that begin in infancy and continue through adulthood, more research clearly needs to be done. For example, what triggers at age 18 months may be responsible for the emergence of autistic behaviors? What is the connection between impairment of the autonomic nervous system and the apparent need for antidepressant and antipsychotic medications commonly prescribed for autism? What can be done to regulate heart rates so that adults with autism do not die young from heart conditions? Certainly, gaining knowledge regarding autism proves helpful, but more research must be done before we can hope to find a cure for autism.

“Jesus replied, ‘Love the Lord your God with all your heart and with all your soul and with all your mind.’” Matthew 22:37

Sunday, May 12, 2019

Bears and Blanket

Before Alex was born in December 1991, I made two teddy bears for him. After seeing how tiny he was as a newborn, I was worried that those bears intended to comfort him might scare him instead with their big eyes and slightly creepy smiles. Nonetheless, he seemed to like them, smiling back at them as he grew older. Once he was bigger, he wanted those teddy bears, whom he designated in his practical way as “Red Bear” and “Blue Bear” for the color of the bows around their necks, beside him in his bed every night. When I would check on sleeping Alex, I would find Red Bear and Blue Bear ever vigilant, always awake and keeping watch over my boy.

Over time, Alex apparently outgrew the bears, who were relegated to his bedroom closet for many years. Most people would have thrown them away after all that time, but I felt sentimental about those bears that I had lovingly sewn and stuffed while Alex was stuffed in my pregnant belly. Moreover, knowing that Alex often rediscovers items from his past and enjoys the nostalgia of remembering his childhood, I thought he would be upset if those bears ever disappeared.

Recently, those bears found themselves relocated from the dark closet to their formerly honored positions in Alex’s bed. Checking on Alex before I went to bed one night, I discovered Red Bear and Blue Bear on Alex’s pillow, one on each side of his peacefully sleeping head. Since they were not there when I said bedtime prayers with him before he went to sleep, Alex must have dragged them out of the closet sometime after we recited bedtime prayers and said, “Goodnight, sleep tight, don’t let the bedbugs bite! Love you!” in unison, as we do every night.

While sleeping with teddy bears is not something typical twenty-seven year old young men should be doing, Alex’s life is not typical. In most ways, he is a little boy in an adult’s body that doesn’t function properly because of autism. His hands don’t cooperate, so he relies upon us to help him with getting dressed, grooming himself, and fixing food. The words don’t come easily, so he trusts us to speak for him when he can’t tell what he needs. Sensory issues make the world too loud, too bright, and too irritating for him, but he knows we do our best to ease the distractions and soothe him. For these and other reasons, he cannot live independently and needs our help to function on a daily basis. Alex's life is not typical in any way, shape, or form.

Perhaps he sought out those teddy bears for additional comfort. Although they are a bit faded and worn with a few stitches I added by hand years later to reinforce the seams that had come undone because they were so well loved, their big eyes, silly grins, and colored bows are still familiar. Their stuffing has flattened over time, but they are still soft. I’d like to think that as they surround Alex’s precious head, they protect his mind and give him peace.

This winter, Alex also began sleeping with a quilt I made for him when he was a little boy. Knowing his love of numbers and letters, I found materials for the quilt squares filled with these beloved symbols and stitched them together for him as I had the bears a few years earlier. Since the quilt was made for a smaller version of Alex, it cannot cover his current nearly six-foot frame. However, he is content to have the “1997 blanket,” as he has dubbed it, cover his feet and keep them warm.

Not long ago, I asked him why he liked sleeping with the bears and quilt again, and he smiled and told me, “Because Mommy made them for Alex.” While these comfort items may serve as nostalgic reminders of a simpler time in his life, I think Alex now appreciates the effort I made by sewing the bears and quilt especially for him. Maybe he sees them as symbols of the all-consuming love I have for him that wants to protect him, to comfort him, to make his life happy and content.

As I continue to pray that God will completely heal Alex of autism so that he can live a fulfilling and independent life, I hope that he someday will not need the comfort of Red Bear and Blue Bear and the 1997 blanket. If they wind up back in the closet as fond reminders of an earlier time, I will be content knowing that they served their purpose. In the meantime, I hope he views these old, familiar bits of cloth stitched together as a reminder of his mother’s unconditional love for her precious son.

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

Sunday, May 5, 2019

Individualized Support Plan

A week and a half ago, we met with Alex’s case manager and behavioral therapist for his regular quarterly meeting. As I have mentioned in previous blog entries, those who receive support services from the state meet every three months with their teams of professionals to go over progress and goals and to discuss any concerns. We have been blessed with outstanding people who work with Alex to develop his skills and who truly care about our family. The primary topic for this particular meeting was to go over Alex’s individualized support plan, which is similar to an individualized educational plan (IEP) developed by special educational personnel for special needs students.

Last year, Indiana’s Bureau of Developmental Disabilities Services implemented Person-Centered Planning that requires gathering a great deal of information in hopes of providing better services for individuals with developmental disabilities. [To read my April 22, 2018, blog entry, “Person-Centered Planning,” explaining this process, please click here.] Although Alex’s case manager has only been working with us for a little over a year, she has done an excellent job getting to know him and collecting the details needed to develop this comprehensive report. Currently, Alex’s person-centered individualized support plan is 32 pages long and will likely increase with the additions we made at our last quarterly meeting.

Prior to our meeting, his case manager sent me a draft copy of the plan, which I read and summarized for Ed, who trusts my judgment. Essentially, Alex’s goals are to continue progress in the following areas: improving his communication skills, engaging in community activities, developing coping skills to deal with anxiety, and achieving greater independence. Considering that autism impacts his language, social, and motor skills, as well as anxiety, these goals make complete sense and are worthwhile pursuits.

Reading the positive statements in the document noting Alex’s achievements and progress over the past few years was quite encouraging. However, his case manager wisely worded these comments, noting that continued success requires keeping vital supports in place, such as ongoing behavioral therapy and music therapy. Those of us who know Alex well recognize how valuable his therapists are to his continued progress toward these essential goals.

After going through the draft copy of the plan prior to the meeting, I made notes regarding changes or additions that might give more insights into Alex and his current interests and concerns. For example, the report noted that Alex’s hardest time of day was between 9:00-10:30 A.M. While this was true several years ago because his bedtime medications had worn off and the morning doses had not yet taken effect, this is thankfully no longer true. In fact, Alex has improved so much that he only takes two medications at bedtime and awakens pleasant natured. Fortunately, he doesn’t have any time of day that is difficult for him, and we are grateful for this significant progress.

However, he still struggles with sensory issues that can trigger anxiety. For example, because his hearing is quite acute, noises can startle him, and he can become overwhelmed by loud music or sounds. If we are out in public, and volume annoys him, we may have to leave. In addition, he has had difficulty recently with weather bothering him, especially rain. I have read that dogs don’t like to go out in the rain, not primarily because they don’t like getting wet, but because their ears are sensitive to the sounds of raindrops. Similarly, I suspect that Alex hears the sound of rain amplified to a level that makes him prefer to stay indoors. With this in mind, we asked his case manager to add the following to his report: “Inclement weather, such as rain, extreme cold, and wind, can bother Alex, due to sensory issues. He also has anxiety about thunderstorms and tornadoes.” Hopefully, these added details will enable others who work with Alex to understand his weather-related concerns.

Additionally, we requested that a few more details be added to the “About Me” introduction to the document under the subheading “What people like and admire about me.” While his case manager had done a good job of explaining tasks Alex does to help around the house, we wanted the report to describe Alex’s positive traits and personality a bit more. Trying to be objective, I considered what other people have said and noticed about Alex. With these observations in mind, we asked that Alex be described in the report as pleasant and amusing as well as noting that he likes to share interests with others and strives to do his best. His behavioral therapist agreed with these descriptors of Alex, and his case manager confirmed the value of including these details in the report.

Finally, in the “Social and Spirituality” section, we felt that addressing Alex’s faith in God was necessary to understanding him. Although church services can prove overwhelming to Alex with sensory issues, such as the vibration of the church organ and the echoing sounds of a sanctuary, he has developed a strong personal faith reinforced through our religious teaching at home. Every night, he asks God to bless a long list of people who are important to him––from family and friends to his support team to former Chicago Cubs baseball player Sammy Sosa. Consequently, we requested that his report include the following statement: “Faith is important to Alex, and he regularly says bedtime prayers.”

Even though Alex’s individualized support plan can be daunting to read, especially as it details the obstacles autism has imposed upon his life, the positive tone regarding the progress he has made with time and support offers encouragement for the future. As we keep working to develop his communication, social, and motor skills, as well as to develop his coping skills and work toward greater independence, we continue to pray for God’s healing. Furthermore, we hope that someday Alex will no longer need a support team or an individualized support plan, knowing that with God all things are possible.

“Jesus looked at them intently and said, ‘Humanly speaking, it is impossible. But with God everything is possible.’” Matthew 19:26

Sunday, April 28, 2019

Recognizing Autism in Babies

According to research, some common traits of autism usually emerge in infants during the ages of 9-16 months. However, parents may not be familiar with these early signs, which can cause delays in having their children diagnosed with autism. Often, children are not diagnosed with autism until they are four or five years old, postponing early intervention that can help address issues associated with autism. This month, two notable organizations introduced helpful guides for parents of infants to help them identify concerning characteristics related to autism so that they may seek further assessment.

According to “Early signs of autism for infants and toddlers,” written by Joe Dziemianowicz and posted April 1, 2019, on the Today show website, a new online resource called Baby Navigator can help parents recognize common traits of autism. [To read this article, please click here.] Developed by the Florida State University College of Medicine’s Autism Institute, under the direction of Amy Wetherby, Ph.D. in communication disorders, this site is designed for parents.

As part of the Baby Navigator site, Autism Navigator offers a wealth of free resources for families, including photos, videos, and screening tools for babies 9-18 months. [To view this site, please click here.] The goal of this site is to help parents recognize the first signs of autism to assist in early detection and diagnosis. A primary resource of Autism Navigator is an online text illustrated with photographs, 16 Early Signs of Autism by 16 Months. This book not only defines common characteristics found in babies with autism but also contrasts these behaviors with those of typical infants. In addition, they note that if only one or two traits are exhibited, parents should not be concerned, but babies showing four of the traits should be screened for autism. Moreover, they recommend that those infants who display eight or more of the traits should be referred for an autism evaluation.

The 16 Early Signs of Autism by 16 Months include the following:

1. “Hard to get your baby to look at you”––They explain that typical babies gaze at their parents’ face and eyes, whereas babies with autism often do not look at faces.

2.  “Rarely shares enjoyment with you”––They note that typical babies smile and laugh, while babies with autism may rarely smile or show facial expressions and may have a flat affect, making it difficult to tell whether they are happy.

3.  “Rarely shares their interests with you”––They explain that babies with autism often do not use gestures, such as pointing, or sounds or words, as typical babies do.

4.  “Rarely responds to their name or other bids”––They describe how babies with autism may not come when they are called or may not engage in interactive behaviors, such as waving or looking where someone else is pointing.

5. “Limited use of gestures such as showing and pointing”––They indicate that babies with autism often do not point with their fingers.

6.  “Hard to look at you and use a gesture and a sound”––They explain that typical babies use a combination of behaviors to show their interests and wants. Babies with autism may not be able to do all three behaviors at the same time.

7.  “Little or no imitating other people or pretending”––They note that around a year old, babies copy others’ behavior, such as caring for a teddy bear or pretending to cook. However, infants with autism may not display these behaviors.

8.  “Uses your hand as a tool”––They describe how typical babies ages 9-16 months use a variety of gestures, such as reaching and waving. In contrast, those with autism have limited gestures and may use their parents’ hands as tools instead, such as using a parent’s hand to point instead of their own.

9.  “More interested in objects than people”––They explain that typical babies like to interact, whereas babies with autism may ignore other people, especially if they are already engaged with toys or objects.

10.  “Unusual ways of moving their fingers, hands, or body”––They note that babies with autism may stiffen and flare their fingers or display unusual posture.

11.  “Repeats unusual movements with objects”––They describe how children with autism may spin or line up objects.

12.  “Develops rituals and may get very upset over change”––They note that typical babies learn routines but can adapt easily to change. By contrast, babies with autism need routine and may be inflexible and upset about change.

13.  “Excessive interest in particular objects or activities”––They explain that infants with autism may be overly focused and difficult to shift their attention away.

14.  “Very focused on or attached to unusual objects”––They note that babies with autism are often drawn to utensils or gadgets.

15.  “Unusual reaction to sounds, sights, or textures”––They describe sensory issues found in autism, such as putting hands over ears in loud environments, squinting in bright light, and being bothered by clothing tags.

16.  “Strong interest in unusual sensory experiences”––They provide examples of behaviors observed in children with autism, including looking out of the sides of their eyes and rubbing objects that have texture.

This clearly written and well-organized book offers a valuable resource for parents of infants who may be concerned that their children are displaying characteristics of autism. Another excellent resource introduced this month may also provide helpful guidance for those parents of infants concerned about their children’s development. The National Autism Association recently published “Autism SOS” online as a simple guide to help parents recognize signs of autism at 12-18 months and 18-24 months. [To view this guide, please click here.] The letters SOS stand for Social Avoidance, Obsession and Repetition, and Speech Delays.

Specifically, social avoidance in autism includes the tendency to prefer objects to people, a lack of eye contact, and not responding to others’ facial expressions, such as smiles. In addition, social avoidance includes the following behaviors: not imitating parents, preferring to play alone, and not liking being touched.

Examples of obsession and repetition commonly seen in autism may involve children staring at their hands or objects, especially things that spin. Moreover, they may engage in repetitive movement, such as hand flapping or rocking. Also, they may exhibit a need for sameness and routine, and they may become upset by sensory issues, including loud noises and bothersome textures.

The third identifying aspect of autism, speech delays, is critical but not as specifically addressed by Autism Navigator. For many parents, speech delays are the impetus to have their children assessed for autism. “Autism SOS” explains that speech delays involve expressive language, such as the baby not attempting to communicate by pointing or reaching or by making sounds like “da-da” or “ba-ba.” In addition, the child may repeat words over and over with no real intent to communicate to others, and by two years old, the child may not be able to produce two-word phrases. Furthermore, children with autism may display speech delays by their lack of receptive language, not responding to their names nor understanding simple statements and questions directed to them.

While the rapidly increasing numbers of children diagnosed with autism are worrisome, the increase of helpful resources for parents is encouraging. Hopefully, the availability of useful guides, including Autism Navigator and “Autism SOS,” will encourage parents to seek professional help for their children who are struggling with autism so that they can overcome obstacles and develop skills needed to develop their full potential.

“After these signs take place, do what must be done, for God is with you.” I Samuel 10:7

Sunday, April 14, 2019

On Target

Recognizing sensory and motor issues people with autism and other disabilities face, popular retailer Target has addressed these needs by recently offering special lines of clothing and home furnishings. Through their Cat & Jack clothing for children, Universal Thread clothing for adults, and Pillowfort home items, Target now offers products thoughtfully designed with their special needs customers in mind.

According to articles on Target’s corporate website, A Bullseye View, titled “Cat & Jack Includes Adaptive Apparel to Help Meet the Needs of Even More Kids” and “Design for All: Cat & Jack Add Select Sensory-Friendly Pieces for Kids,” Target began offering “sensory-friendly” clothing in 2017. [To read these online articles, please click here and here.] For example, this line of clothing has stamped labels instead of tags, flat seams, and no embellishments that may bother children with sensory sensitivity. In addition, leggings were designed with extra room in the hips to accommodate older children who wear diapers.

Target clothing design director Stacey Monsen knows firsthand the difficulties of dressing a child with autism: her young daughter has autism and was not potty trained by age seven. Working with a volunteer group of parents and organizations who could provide input, the Target team worked to solve some of the problems of clothing children with special needs. As Stacey Monsen states, “My goal is to keep being an advocate, for my daughter and for others.”

Not only are the Cat & Jack clothing sensory friendly, but they also come in a wide range of sizes: toddler sizes 2T-5T and bigger kids sizes extra small through extra extra large. Additionally, the clothes are quite reasonably priced from $4.50-$39.99, with most priced under twenty dollars, making sensory friendly clothing available to a wide range of customers.

Following up on the popularity of the Cat & Jack sensory-friendly clothing, Target introduced adaptive clothing in the fall of 2018. Using input from “real kids,” designers developed apparel to meet special needs. Specifically, this clothing line includes snap and zip closures on the sides and back along with abdominal access openings that are hidden. Other features include footless sleepwear, bodysuits sized for older children wearing diapers, and jackets with zip-off sleeves. Additionally, this clothing is made with “extra-soft, comfortable, and durable cotton knits.” All of these adaptive clothes were designed to make dressing easier for children with special needs and their parents.

According to a Disability Scoop online article written by Shaun Heasley and published on January 31, 2018, “Target Adding Clothing For Adults With Special Needs,” the retailer added a line of clothing to serve women with sensory and adaptive needs in February 2018. [To read this article, please click here.] The Universal Thread collection offers tops and jeans in a wide range of adult sizes reasonably priced from $5 to under $40. Like the Cat & Jack clothing line for children, the adult versions are “sensory-friendly” with stamped labels instead of tags, flat seams, and extra-soft material. The jeans have longer inseams, wider leg openings, high-rise backs, and no pockets to make getting dressed easier.

Building on the success of the clothing lines addressing special needs, Target has recently added sensory-friendly items to their Pillowfort home collection. According to an online article written by Mark Wilson on Fast Company published April 3, 2019, and titled “Target’s newest furniture is for kids with sensory sensitivity,” Target is now offering furniture items specifically designed for special needs children. [To read this article, please click here.] Just as with their Cat & Jack sensory-friendly and adaptive clothing, Target designers consulted with parents and children to gain input on this sensory-friendly furniture line.

Furthermore, Target’s website details the careful thought put into these special home items on their “Sensory Friendly Kids’ Home” page. [To access this page, please click here.] For example, the cocoon seat offers “cradled comfort” as well as a removable, washable “super-soft” cover with a water-resistant liner. The hideaway tent allows children a place to get away from sensory overload while providing a carrying case for easy transport. The crash pads, like the cocoon seats, have removable, washable covers with water-resistant linings, as well as durable fabric and foam. The weighted blankets, which many children with autism find soothing for sleep, have “super-soft removable, washable covers.” As with the special clothing lines, Target has kept these home items reasonably priced from $20-100, making them available to most families. As Target senior vice-president Julie Guggemos explains, “At Target, our purpose is to help all families discover the joy of everyday life.”

Certainly, Target should be commended for their concern for special needs customers and their willingness to seek input about how to make their lives easier and better. By offering a variety of reasonably priced clothing and furniture that address sensory and adaptive issues, Target can successfully meet the needs of a growing population. Indeed, through the Cat & Jack, Universal Thread, and Pillowfort collections, Target can help families, especially those with special needs, “discover the joy of everyday life.”

“And this same God who takes care of me will supply all your needs from His glorious riches, which have been given to us in Christ Jesus.” Philippians 4:19

Sunday, April 7, 2019

Autism by Numbers

Last Monday, April 1st, marked the beginning of this year’s Autism Awareness Month. One of the many things I have learned from Alex is the value of numbers and statistics, as well as qualifying figures as “approximately” or “exactly.” In honor of my adult son with autism, I will share some important data that demonstrate the need for autism awareness every month, not just every April.

The sources of my information are articles from the websites for the National Autism Association and The Autism Community in Action. [To read “Autism Fact Sheet,” please click here. To read “Autism & Safety Facts,” please click here. To read “Autism Statistics and Cost,” please click here.]

1.  According to current statistics from the Centers for Disease Control and Prevention, approximately 1 in 59 children in the United States has autism.

2.  The rate of autism is 4.5 times higher in boys than in girls: an estimated rate of 1 in 42 boys vs. 1 in 189 girls in the U.S.

3.  Approximately 40% of children who have autism do not speak.

4.  Estimates reveal more than 3 million people in the United States have autism.

5.  Since 1970, autism rates in the U.S. have increased significantly from 1 in 10,000 to 1 in 1,000 in 1995 to 1 in 250 in 2000 to the 2018 report of 1 in 59.

6.  Even though autism is the most rapidly increasing developmental disorder, only about 5% of government research funding is spent on autism.

7.  Autism is often––in as many as 85% of people with autism––accompanied by other conditions, such as anxiety, OCD, epilepsy, allergies, asthma, autoimmune disorders, and gastrointestinal disorders, as well as difficulties with eating, sleeping, and sensory issues.

8.  In 2008, researchers in Denmark discovered that people with autism have double the mortality risk than typical people, primarily due to drowning and accidents.

9.  Approximately half (48%) of children with autism try to wander away from safe environments.

10.  In children with autism aged 14 and younger, 91% of total deaths in the U.S. resulted from accidental drowning after wandering away from a safe place in 2009, 2010, and 2011.

11.  Of adults who have autism, 87% live with their parents.

12.  The United States currently spends about $268 billion for autism costs annually. This amount is projected to increase to $1 trillion per year by the year 2025.

Behind these facts and figures are real people and their families whose lives are impacted every day by autism. While awareness is important, action is needed to help children and adults who are struggling with autism. Because so many cannot speak for themselves, we must speak for them.  Those who wander need to be protected from danger, and underlying medical and psychiatric conditions need to be treated instead of simply being dismissed. Moreover, more research needs to be done to find the causes and cures for this lifelong disorder that is growing at epidemic levels at great personal and financial cost. Our society can and must do more to help these vulnerable and precious souls afflicted with autism and their families who love and care for them.

“Teach us to number our days, that we may gain a heart of wisdom.” Psalm 90:12

Sunday, March 31, 2019

Waiting for a Change

“At the time I have decided, my words will come true. You can trust what I say about the future. It may take a long time, but keep on waiting––it will happen!” Habakkuk 2:3

About a week and a half ago, we noticed Alex wasn’t acting like himself. Instead of being good-natured, he was irritable. Instead of being logical, he was irrational, jumping to ridiculous conclusions. In addition, his OCD, which is usually controlled well by medication, was heightened as he kept repeating the same questions and phrases. From years of experience, Ed and I recognized these telltale behaviors as a likely sign that Alex once again had yeast overgrowth in his digestive system, which affects his behavior negatively.

Fortunately, his doctor understands the impact yeast has on Alex’s behavior and trusts our diagnostic skills in this area. After I sent his doctor a brief email describing our suspicions and requesting a refill of antifungal medication, he responded quickly and assured me that he had sent a prescription to the pharmacy. When I went to pick up the antifungal, I was pleased and surprised to discover that his doctor had authorized enough refills to last a year. Clearly, he recognizes the negative effect yeast overgrowth has on Alex, and he trusts our judgment in giving medication as needed to help Alex heal.

As we have found from experience, the antifungal medication makes a difference quickly. Within an hour, we see Alex become more docile and less edgy. Within two hours, he’s content and calm, and the OCD behaviors seem to disappear. Because he responds so favorably to the antifungal, our suspicions regarding what made him irritable are confirmed. Since we have dealt with these infections repeatedly for years, we know what to expect and are always grateful that the medicine works fairly rapidly to make Alex feel better. Waiting is easier because we don’t have to wait long to see changes, and we are confident he will get better.

A few days ago, Ed came home from work grimacing and holding his left hand on his lower back. Some Google searching had allowed him to diagnose himself with his first kidney stone. Despite my suggestion to go to the emergency room that evening, he decided to try to treat the ailment himself by drinking water and taking over-the-counter pain relief medicine. The next morning, when the pain was getting worse instead of better, I made an appointment for him to see his doctor, who confirmed that he did, indeed, have a kidney stone. Even though his doctor prescribed various medications to help the nausea and pain as well as to help the stone pass, Ed was suffering from what he described as the worst pain he’d ever experienced in his life.

At that point, we knew he needed to go to the emergency room, but with Alex, plans always need to be made carefully so that he doesn’t get upset and overreact. A quick phone call to my parents, who thankfully live only ten minutes away, solved the problem. My dad, who has dealt with kidney stones over the years and could empathize with Ed’s pain, would take him to the ER while my mom and I stayed home with Alex to keep him calm. As we waited, we prayed that Ed wouldn’t have to wait long for his pain to ease.

About an hour later, my dad called to tell me that everything was going well and that all of the medical staff had been kind and helpful. In fact, the doctor taking care of Ed had suffered from kidney stones, too, so he could relate to how painful they are. When the nurse gave Ed intravenous pain medicine, she assured him that he would feel much better within twenty minutes. While that intensely painful waiting time must have seemed much longer, the nurse’s prediction was accurate: Ed’s pain level dropped from the highest rating of 10 down to 1 in twenty minutes. Moreover, as the doctor had predicted, Ed was relieved to be able to pass the stone last night fairly painlessly without any further medical intervention. Just as with Alex, the right medical treatment makes all the difference in the world, and experiencing positive changes makes waiting for complete healing bearable.

While I hate that Alex and Ed had to suffer needlessly, both of these experiences show how things can change suddenly for the better. So much of life is spent waiting and wondering when things will change. Many times I have sat in waiting rooms, wondering how much longer before my turn would arrive or even if they had forgotten about me. The longer I waited, the more I became frustrated and began questioning if I should just give up and leave. Nonetheless, the waiting eventually ended, and my turn always arrived, despite my lack of patience.

Similarly, the longer we deal with Alex’s issues related to autism, I can become discouraged waiting and wondering if things will ever change. However, experience has taught us through the years that things do get better in time. We wondered if he would ever sleep through the night, and in time he did. We began to lose hope that he would ever learn to use the toilet independently, but after years he finally did. We questioned if he would ever be able to carry on a conversation with us, and now some of our sweetest moments are spent chatting with our fascinating and entertaining son. Somehow the longer time passes, we think these changes for the better are less likely to happen, but we continue to wait for the appointed time God has designated for these milestones.

Thankfully, I was raised by loving parents whom I can always trust for help, support, and comfort, so I know that I can also trust my heavenly Father to take care of my family. When my parents told me the other evening that they were on their way to help us, I had no doubt that everything would be all right. Knowing that help is coming makes the waiting easier to take. Similarly, I can trust that God’s help is on the way, so I don’t need to despair. If we didn’t have to wait in life, there would be no real need for faith. Moreover, the longer I live, the more of God’s goodness I see, fulfilling His plans, while making the waiting less wearisome and more worthwhile, as I know that healing will eventually come in His perfect timing.

“I wait for the Lord, my soul waits, and in His word, I put my hope.” Psalm 130:5

Sunday, March 24, 2019

Autism and OCD

Since many people with autism are also diagnosed with obsessive-compulsive disorder, scientists have been studying how these two conditions impact each other and differ from one another. A recent article written by Daisy Yuhas and published online on February 28, 2019, in Scientific American, “Untangling the Ties Between Autism and Obsessive-Compulsive Disorder,” compares and contrasts these two disorders. [To read this article, please click here.]

Research indicates that up to 84% of people with autism suffer from some form of anxiety, and up to 17% of people with autism spectrum disorders also have obsessive-compulsive disorder. People with autism and/or OCD may respond to sensory stimuli in unique ways; sensory overload can cause anxiety, which is part of OCD. Typically, those with OCD deal with obsessions, or recurring thoughts, feelings, and ideas. They may also be driven to engage in ritualistic, repetitive behaviors, or compulsions, attempting to get rid of these unwanted obsessive thoughts.

In studies, researchers have observed that OCD rituals appear quite similar to repetitive behaviors found in autism. For example, those who have obsessions with cleanliness may wash their hands over and over, or those who have obsessions with safety may repeatedly check to make sure doors are locked and appliances are turned off. Typical repetitive behaviors in autism include lining up toys or other objects in a certain order, flapping hands and/or rocking the body, or watching a scene from a video repeatedly.

While both conditions involve repetitive behaviors, differences exist between OCD rituals and autism behaviors. To illustrate, OCD rituals are quite specific and must be performed in a certain way to relieve anxiety. However, autism behaviors tend to be more generalized. Those with autism usually have various repetitive behaviors they can choose to calm themselves. As Columbia University professor of psychiatry Jeremy Veenstra-VanderWeele notes, “They’re [people with autism] just looking for anything that’s soothing; they’re not looking for a particular behavior.”

Although the reasons for repetitive behaviors in OCD and autism may differ, the parts of the brain associated with both conditions appear to be the same. Recently, scientists have discovered common pathways and brain regions in both autism and OCD, namely the caudate nucleus located in the brain’s striatum. The striatum area of the brain is linked to voluntary movement and reward processing. The neural circuits running through the striatum are involved in how behaviors start and stop, including in how habits form.

Additionally, the caudate nucleus deals with memory, specifically storing and processing prior knowledge and experiences to help in making future decisions. Moreover, the caudate nucleus is crucial for using language and learning. According to research, the caudate nucleus tends to be unusually large in people with autism and in people with OCD. Scientists have theorized that in people with OCD, the caudate nucleus may not be able to control transmission of worrisome thoughts, which affects their actions and decisions. Hence, rituals are used to cope with anxiety associated with obsessive thoughts.

While the most common intervention for OCD is cognitive behavioral therapy, those who have dual diagnoses of autism and OCD usually do not benefit from this treatment method. In cognitive behavioral therapy (CBT), therapists help people discover new coping techniques by changing their thought patterns. However, researchers note that people with autism tend to have difficulties imagining situations and alternative outcomes. For this reason, CBT may need to be individualized to meet the needs of each person. For example, children with autism may benefit from having their parents included in the therapy sessions. Other people with autism may find CBT more useful if language is adapted, visuals are provided, and/or rewards are offered. While personalization of CBT therapy may require more effort, the effectiveness of this therapy will likely increase.

Even though autism and OCD share common characteristics, such as repetitive behaviors in response to sensory overload and anxiety as well as involvement of a specific area of the brain, differences exist between ways of seeking calming behaviors and the effectiveness of standard treatment. For those dealing with both autism and obsessive-compulsive disorder, therapists need to individualize methods of treatment, teaching calming skills and coping methods so that their clients can enjoy a better quality of daily life.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

Sunday, March 17, 2019

Change of Plans

When good things happen, people often attribute them to fortunate coincidences or lucky breaks. Today, on St. Patrick’s Day, one might even give credit to "the luck of the Irish.” However, I know that these benefits are not simply random events but are instead blessings, and I’m constantly looking for the hand of God in everyday life. Last week, I didn’t have to look far, as we saw God’s attention to detail as changes in plans made our lives easier.

Two weeks ago, Alex was scheduled to have his regular six-month cleaning and check-up at the dentist. Up until a few years ago, we took him to pediatric dentists who specialized in treating disabled patients, but then we switched him to our family dentists. Because our dentists and their staff are so kind and understanding of Alex’s needs, Alex loves going for dental appointments. He is especially fond of his hygienist, who is wonderful with him, kindly explaining what she is going to do beforehand so that he’s not taken by surprise and constantly praising him for doing a good job.

The day of Alex’s scheduled appointment, the office called to tell me that his hygienist would not be there that day. They gave us the option to keep his appointment and have another hygienist clean Alex’s teeth or to reschedule another appointment with his regular hygienist. Knowing that Alex would prefer to see his beloved hygienist, I opted to reschedule his appointment for next month.

Last Wednesday morning, I was surprised to receive a call from our dentists’ office telling me that Alex’s hygienist had an appointment available that afternoon if we wanted it. Although this was another sudden change in plans, I thought Alex would be pleased to see his hygienist sooner than expected. After asking him if he would like to go to the dentist, he decided he did, and we took the offered appointment that day.

The day that Alex was originally scheduled to go to the dentist was a bitterly cold and windy day. In fact, I had considered canceling his appointment because I wasn’t certain that we could convince him to go in the bad weather. By contrast, last Wednesday was mild and fairly warm, and we knew he would be fine going out in the pleasant weather. Even his dentist remarked on what an improvement in the weather there had been between the two days. I have no doubt that God rearranged the details to make things easier for Alex, and in turn, for us.

Alex’s appointment went remarkably smoothly, as he interacted nicely with his hygienist and dentist and handled the cleaning and check-up with complete calm. His hygienist commented that Alex keeps getting better and better every time she sees him, which was encouraging. An added bonus was that Alex had no cavities, so he doesn’t need any additional work and doesn’t need to go back for another six months. Despite the changes to the original plans, or perhaps because of those last-minute changes, Alex adapted and handled them better than we could have anticipated.

The following day, Alex was scheduled for music therapy. As I have explained in previous blog entries, Alex is still adapting to having music therapy at his therapist’s office instead of having in-home sessions. After sensory issues overwhelmed Alex for the last session, his therapist decided to do the next session at our home. As I expected, Alex did very well in the more comfortable home setting for this most recent music therapy session.

Besides the session going well, we were also thankful Alex was at home for another reason. Shortly after his therapist left, I could hear the local tornado sirens sounding, and the television weather reports issued a tornado warning. Since Alex has anxiety about tornadoes, we calmly took him to our basement and reassured him that we were safe there. Fortunately, the tornado warning did not last long, and the tornado that caused the warning to be issued was small and far from our home. However, had we gone to the music therapist’s office that day, we would have been driving home with the tornado sirens blaring and Alex likely having a meltdown all the way home in the car. Once again, we felt blessed that God had arranged, or rearranged, the plans in our favor.

Seven years ago this month, we made our most difficult decision as parents to have Alex hospitalized for debilitating anxiety. After trying for months to help him ourselves and unable to find anyone locally who knew how to help, we took him to a facility in an adjoining county. As upsetting as that time was, we know that God had arranged those plans, too. From that difficult experience, we gained a team of dedicated professionals who knew how to help Alex and how to support us as parents.

Through the guidance of the hospital social worker, we learned how to navigate the state system of getting disability services. In addition, we learned the value of having medical power of attorney for Alex and were blessed to have an attorney friend who came to our home on a Sunday afternoon to draw up the needed paperwork right away. The psychiatric nurse practitioner assigned to Alex has the reputation of knowing more about adults with autism than anyone in our area, and she continues to oversee his medications. After this time of crisis, we gained an excellent case manager to act as Alex’s advocate and oversee his state disability services, a phenomenal behavioral therapist to help him deal with anxiety, and a trusted respite caregiver who treats Alex as a friend. Additionally, we were able to reconnect with his outstanding music therapist after taking a break due to Alex’s anxiety.  God knew that we needed all of these people in our lives, and He brought them to us to help make Alex better.

Although things seemed to be falling apart at the time, God was assembling all the pieces and putting them together for us in ways we had never considered. Whenever I fret about what the future holds for Alex, I need only to look back at the past to see how God has always provided what we need. Certainly, there is no reason to worry because I believe that His hand will continue to move people and circumstances where they need to be. Moreover, I have no doubt that God’s plans for Alex are better than I can even imagine.

“‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” Jeremiah 29:11