Sunday, March 22, 2020

Shelter in Place

As COVID-19 has recently become a global pandemic, people around the world have faced fear and uncertainty as well as a loss of freedom because sheltering in place has become necessary to stop the spread of the virus. Although the concept of staying home is daunting for many, I have had to shelter in place before and can assure those who are experiencing this for the first time that one can be content while homebound. As the Apostle Paul states in Philippians 4:11, “…for I have learned to be content whatever the circumstances.”

When I was pregnant with Alex, I was diagnosed with a rare autoimmune disorder, chronic immune thrombocytopenia purpura, or ITP, in which my immune system mistakenly destroyed healthy blood platelets responsible for clotting, putting me at risk for hemorrhaging. Normal platelet count is between 150,000-450,000; my typical platelet count at the time was about 100,000. Shortly before Alex was born, I caught a bad cold, causing my immune system to overreact, and my platelets dropped dangerously low to 2,000. My obstetrician, who never minced words, warned me, “You could hemorrhage into the placenta and kill both you and the baby!” After being hospitalized for a few days and treatment with intravenous gamma globulin, my platelets returned to a safer range. However, I was to be essentially confined to home for the next few months, taking care of a newborn baby and not risking getting sick and having my platelets drop. Fortunately, by avoiding other people’s germs, I never had another ITP crisis, and thankful to be alive, I was fine with being safely ensconced at home.

Later I would realize that situation properly prepared me to be the mother of a child with autism. At various times, we have had to shelter in place with Alex because his unpredictable behaviors made going out in public too difficult for us, or his sensory issues and anxiety made leaving the house too difficult for him. Rather than complaining about the restrictions autism has imposed on our family life, we have accepted what is. Thankfully, the three of us enjoy being at home, reading books, listening to music, watching television, surfing the internet, and spending time together in our peaceful existence. Sheltering in place has frequently become a way of life for us.

Yesterday, an autism dad shared an interesting online article written by mental health counselor Rose Reif and titled, “4 reasons why special needs parents are better equipped than everyone else to handle Coronavirus stress.” [To read this article, please click here.] Although one would think that parents with special needs children would find the extra stress caused by the pandemic daunting, she explains how life has prepared these parents to cope even in extreme circumstances. Specifically, she notes four qualities that make special needs parents stronger––traits that others can learn and use to get through this current crisis.

First, she states that special needs parents are adept at “tolerating ambiguity,” that is, accepting uncertainty, such as not knowing how long this pandemic will last or what will happen. As she notes, “…for special needs parents, this is not the first time that life hasn’t looked how they expected it to look.” Moreover, she explains that special needs parents have learned to accept and adapt to change quickly out of necessity, knowing that there are “no guarantees” in life. When I am tempted to fear the future, I remember the wisdom of my son, who often prophetically says, “Wait and see.”

Another trait that makes special needs parents resilient according to this article is that they are “focusing on what they can control (and only on what they can control).” While we can’t control what others say or do, we can control what we say and do as well as determining our attitudes. Life with a special needs child can feel out of control, but we take control by our response, especially in a crisis setting. Alex’s behavioral therapist has taught him a variety of mantras to recite when he feels anxious so that he can feel a sense of control. His favorite is “Everything will be all right.” I do the same thing with Bible verses, most often Philippians 4:13, “I can do all things through Christ who strengthens me.” More importantly, we know that God is in control, which gives us even greater comfort than thinking we are in control.

A third quality noted in the article that special needs parents possess is “knowing when to accept ‘good enough.’” Through experience, special needs parents have learned that they cannot do everything they should/need/want to do, so they have learned to accept their limits and prioritize where to focus their energies. As Ms. Reif states, “These special needs parents recognize that good enough may actually be perfect right now.” As a perfectionist, this was a hard lesson for me to learn, but placing unreasonable expectations upon myself brings anxiety and discontent. Good enough is good enough, at least that's what I keep telling myself.

Finally, the article explains that special needs parents have an “understanding that social distancing is not the same as emotional distancing.” Specifically, parents of special needs children “know intimately the pain of feeling isolated” because they have often had to miss family gatherings or social events, due to their child’s unique needs. However, Ms. Reif observes that this isolation has made them empathetic to the feelings of those who are currently struggling with social distancing. She notes of special needs parents: “They are reaching out, maintaining connection, and validating how hard it really is to feel alone in your struggle and fear.” Thankfully, modern technology allows us to connect via phone, email, and social media so that we can feel less isolated from people we care about.

As we look ahead in these days of uncertainty, when life feels out of control and we struggle to accept that we are doing enough, we need to connect with others so that we don’t feel alone. Although special needs parents have learned these lessons the hard way, perhaps others can benefit from our experience. As the Apostle Paul reminds us to follow God’s example in II Corinthians 1:4, “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” Here’s a comforting thought: You’ve got this because God’s got this. Or, as Alex would say, “Wait and see. Everything will be all right.”

“For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his sacred tent and set me high upon a rock.” Psalm 27:5

Sunday, October 20, 2019

Seek and Find

In last week’s blog entry, I wrote about the need for sameness in autism and the problems that can arise when certain comfort items are no longer available. Thanks to the thoughtfulness of an autism dad, The Little Blue Cup Project emerged, allowing parents to connect with others and track down rare items their children need. The online article I cited from Vox [To read this article, please click here.] also described problems that occur when certain foods are taken off the market. Since many people with autism can be picky eaters due to sensory issues and/or have food allergies and sensitivities, being able to obtain specific favorite foods is a priority for many parents whose children may reject substitutions.
Specifically, the article cites the example of a mother who orders food items in bulk quantities for her adult son who will only eat a few items, such as Laughing Cow cheese spread, two flavors of Capri Sun drinks, and Nesquik chocolate drink mix. When her local grocery stores stopped carrying Laughing Cow cheese, she wrote to the company, and they sent her a refrigerated package containing four dozen boxes of her son’s favorite cheese. In addition, she states, “I stockpile everything as if I can’t source them in the shops, and he will not have alternatives.” Although shopping for groceries should not have to require research and detective work, for many parents of children with autism, it does.
Because of sensitivities to cow’s milk, Alex has been on a dairy-free diet for more than twenty years. Recently, I had noticed that the specific type of coconut milk beverage I use to make pudding and smoothies for Alex has become more and more difficult to find in grocery stores. Fortunately, the company’s website lists places where their products may be purchased; however, the specific flavor Alex prefers was no longer available in the shelf stable package we had bought for several years.
With some more online searching, I discovered that our local Target store carries the same brand and flavor of coconut milk beverage in milk cartons in the refrigerated case. What is especially helpful is that Target’s website not only tells in what aisle their products may be found but also how many of that particular item are currently in stock.
Thankfully, Target carries the elusive coconut milk beverage as well as the same brand’s coconut milk vanilla yogurt alternative that Alex eats every day. While other local stores had either stopped carrying this product or were often sold out, probably due to greater demand and limited supply, Target has come through for us once again by providing Alex’s favorite dairy-free yogurt. Even better is that they offer this yogurt at a lower price than what we had been paying at grocery stores.
After solving the issues with coconut milk beverage and yogurt, I thought I could rest a bit from tracking down foods for Alex. However, a couple of weeks ago, our local grocery store that offers a wealth of special diet foods suddenly stopped carrying Rice Dream nondairy frozen dessert, the ice cream equivalent Alex has eaten for more than twenty years. After checking their website and discovering that no local stores carry this specific product, I wrote an email to the local grocery store’s manager requesting that they order this product. Within a day, the manager sent me a very cordial response explaining that their supplier no longer carries the Rice Dream frozen dessert. He even went to the trouble of checking to see if he could get the item from other suppliers but had no luck. Moreover, he assured me that if their supplier began carrying this product again, he would be happy to order it for me. While I certainly appreciated his kind efforts, I knew that I would have to find an alternative to yet another unavailable food item that Alex eats every day.
Once again, I was grateful for the ease of Internet searching, which led me to two alternatives for Rice Dream’s frozen dessert. So Delicious, whose coconut milk beverage and yogurt have been elusive but finally found at Target, make a coconut milk “ice cream” and so does a company called Nada Moo. After scanning their websites, I found that So Delicious non-dairy frozen dessert is available at two of our local stores as well as Target, while the Nada Moo is only found at Target. Again, the ever-helpful Target website allowed me to find the aisle number for these dairy-free treats as well as the number they currently had in stock before I ever arrived at the store.
Of course, my search for dairy-free ice cream would have been in vain if Alex rejected the coconut milk substitutes. Thankfully, he seems to like the flavor and texture of the coconut milk ice cream as much if not more than the rice milk ice cream he’s eaten all these years. Now I can buy his coconut milk beverage, yogurt, and ice cream all at the same place as well as have the opportunity to make a Target run, which I always enjoy!
Thinking that my current quest to find things for Alex was over, I was disappointed to discover last week that the shampoo he has used for many years has also been discontinued. Once again, I turned to my laptop for a search of stores that might have his shampoo and was able to get some good leads. Knowing that he is sensitive to textures and smells, I knew I had to buy up as many bottles of his shampoo as I could find to store for future use. Feeling like a hoarder, I stopped at three different stores and bought a total of nine bottles of his shampoo, which should last us for a while. Hopefully, before we run out, I’ll be able to locate an acceptable substitute or he’ll be less picky about his toiletries of choice.
Among the various challenges autism presents is the need for sameness, which tests parents who are trying to find specific foods and items our children need and prefer. Fortunately, the Internet makes our searches for these favorite things easier as we try to help our children cope in a world that changes faster than they would like. Consequently, we pray for their healing so that they can learn to be more flexible and willing to accept alternatives when the originals are no longer options. In the meantime, we autism parents hope that every time we seek, we shall find what our children need.
“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

Sunday, October 13, 2019

Comfort Objects

In their early years, many children develop a fond attachment to certain objects that bring them comfort. For me, a small pink blanket I draped over my toddler shoulders served as my security blanket, much like the Peanuts’ cartoon character Linus. My mother tells of how I stood by the washer and dryer waiting for that beloved pink blanket’s return during necessary laundry sessions. Most appealing about this blanket was the satin binding around the edges that I fingered as I sucked my thumb. In fact, I so associated the two calming sensory activities that when I decided to stop my thumb-sucking habit, I told my mom to throw my blanket away. Wisely, she simply hid my pink blanket in case I changed my mind, but my resolve proved strong, and I never resumed my old habit nor needed the blanket I had dragged around until I was five.
When Alex was little, he had a beloved blanket, as well, although his was too large to carry around. As a toddler, he slept under a quilt my grandfather had given me. Years earlier, Paw Paw had bought handmade quilts for each of his six grandchildren. Mine has squares depicting little boys carrying fishing poles. The most eye-catching elements are the various brightly colored fabric hats and boots the boys are wearing that are appliqu├ęd on the quilt. Alex was drawn to this design, and he called the quilt “the boys with socks.” Every night as he happily snuggled under his cozy quilt, he seemed content that “the boys with socks” would keep him company all night long.
Aside from the security blanket, Alex has had other objects that he finds comforting. However, most of them have been electronic items, such as graphing calculators, spelling correctors, and handheld games. If he misplaced these precious possessions, he became upset and even frantic until we found them. Because these things were so important to him, we learned to keep batteries on hand at all times to ensure they never lost power. In addition, we even bought duplicates of some of these items so that he wouldn’t melt down when they temporarily disappeared or permanently broke. Apparently, his attachment to certain objects is rather common in the autism community.
In a recent article, “Some autistic people find comfort in specific objects. What happens when they’re not available anymore?” published on October 4, 2019, in Vox, author Sarah Kurchak explains why people with autism value comfort items. [To read this article, please click here.] She notes that autistic people like herself dislike change and prefer stability, often found in certain objects. For her, a specific type of iPod offers her comfort because the songs programmed on her playlist drown out noise, and she finds the texture of the click wheel soothing. Since this device is no longer manufactured, she explains that she has been searching eBay online for a specific model identical to the one she owns that needs to be replaced. As she states, “We tend to use the same items over and over again until they fall apart, or we lose them.”
When children with autism lose precious comfort objects or these items break or wear out over time, parents often turn to the Internet to find exact duplicates. However, some of these products may no longer be available, which makes this desperate search more complicated. A few years ago, a father from England began searching for a specific drinking cup, the only one his son with autism would use.  In the article “Little Blue Cup: Dad Who Searched For Tommee Tippee Cup For Son With Autism Starts Global Kindness Project,” published November 22, 2017, in Huffington Post, Amy Packham explains how Marc Carter started an online network to find specific items for people with special needs. [To read this article, please click here.]
After he searched for the discontinued cups his son, Ben, needed, the company that had previously made them sent him five hundred exact duplicates. Recognizing that other parents of children with autism may have similar needs, Ben’s father established Little Blue Cup, a Facebook page for parents seeking specific hard-to-find objects. Explaining the purpose of this online networking project, he states, “If you care for someone with disabilities or special needs and they need a cup, bottle, or anything else, something small that keeps them happy, healthy, and from having the most challenging times, please let me know and we will search the Internet together.”
Looking over the Little Blue Cup Facebook pages (including a page specifically for the United States and Canada), one sees requests for a variety of objects held dear by people with special needs: blankets, clothing, stuffed animals, and other toys. Most of these items are rare or no longer manufactured, making the search to replace them more difficult. While the requests and stories behind them are touching, the responses to the families’ needs are also heartwarming as people try to fulfill these requests with similar or exact duplicates. Clearly, Marc Carter’s experience with his own son’s needs allowed him not only to display his empathy by setting up the Little Blue Cup Project but also to provide a way for people to interact compassionately by requesting and fulfilling special needs.
Although comfort items are typically associated with children, the need for these special objects often continues into adulthood for people with autism. As one adult with autism remarks in the Vox article, “As you get into adulthood, you’re kind of told that you’re not supposed to have comfort items…It’s not an exclusively autistic thing, but it gets drilled into us that we have to outgrow certain childish tendencies, like having comfort stuffed animals or comfort items that you take with you all the time. If autism is seen as a developmental disorder, then autistic people are seen as people who have to outgrow childhood.” Fortunately, with the establishment of the Little Blue Cup Project and the support from people willing to share comfort items, perhaps those with autism can retain not only objects precious to them but also an innocent childlike existence where they can feel comfort in knowing people love and care about them and will strive to meet even the seemingly smallest of their needs.
“When doubts filled my mind, your comfort gave me renewed hope and cheer.” Psalm 94:19

Sunday, October 6, 2019

The Autism CARES Act

Last Monday, on September 30, 2019, President Donald Trump signed the Autism CARES Act into law. As Natasha Anderson from Cleveland’s Fox 8 News reports in an online article titled, “President Trump signs ‘Autism CARES Act’ providing $1.8B in funding for programs,” this law offers 1.8 billion dollars over five years for autism programs. [To read this article, please click here.] Specifically, three government agencies––the Centers for Disease Control and Prevention, the National Institutes of Health, and the Health Resources and Services Administration––will use these funds toward autism research, education, early detection, and treatment.
According to an online article written by Michelle Diament titled, “Congress Considers Renewal of Autism Act,” and published online February 11, 2019, on Disability Scoop, the Autism CARES Act enables continued federal funding for autism. [To read this article, please click here.] Autism CARES is the acronym for Autism Collaboration, Accountability, Research, Education, and Support.
However, this is not the first federal government act passed to help people with autism and their families. According to the “Autism CARES Act Issue Brief” published on the Autism Society website, President George W. Bush signed the Combating Autism Act into law in 2006.  [To read this summary, please click here.] This law was designed to coordinate federal agencies in response to significant increases in the numbers of children diagnosed with autism. Since that law was signed in 2006, the rate of autism has substantially increased even more––approximately six hundred percent.
The recently signed Autism CARES Act replaces the original Autism CARES Act that was due to expire on September 30, 2019. The 2014 Autism CARES Act was a bipartisan bill both the Senate and the House of Representatives passed unanimously. Under the previous ACA, $260 million of government funds were allocated annually for autism research and services. Not only does the new version of the ACA provide significantly more funding, but the current law also addresses the needs of adults with autism, using the phrase, “across the lifespan.”
Another bipartisan effort, the Autism CARES Bill of 2019 was sponsored by Representatives Chris Smith, a Republican from New Jersey, and Mike Doyle, a Democrat from Pennsylvania. Similarly, in the Senate, the bill was introduced by Senator Bob Menendez, a Democrat from New Jersey, and Senator Mike Enzi, a Republican from Wyoming.
In a statement, Representative Smith noted, “The problem of ‘aging out’ of services is a real hurdle every parent or caretaker of a child with autism inevitably faces. But autism is a lifetime neurological disorder, and adults with autism continue to need their services.” Additionally, he stated that the Autism CARES Act will help provide support to “an estimated 50,000 persons with autism each year who ‘age out’ of critical assistance programs,” a crucial need since, “many individuals and communities are unprepared for this transition.”
The Autism CARES Act addresses three primary areas: research, data, and training. Federal funds support research into biological, genetic, and environmental aspects of autism as well as seeking potential biomarkers for autism. In addition, researchers seek the best methods for treatment and intervention in autism. Under the direction of federal agencies supported by the Autism CARES Act, data is collected to estimate the number of children with autism in various regions of the United States and to help identify risk factors for autism. Along with research and data collection, the Autism CARES Act supports training professionals to screen, diagnose, and treat people with autism, including addressing physical and behavioral issues. Moreover, the Autism CARES Act funds agencies that provide parents with support and information regarding access to services for their children with autism.
President Trump demonstrated his heartfelt concern for autism families as well as his enthusiastic support for the Autism CARES Bill, posting the following comments on Twitter: “Today I was proud to sign the Autism CARES Bill! We support research for Americans with Autism and their families. You are not forgotten, we are fighting for you!”
Certainly, the Autism CARES Act serves as an impressive example of how politicians can work together amicably for a noble cause. Hopefully, greater emphasis upon the needs of adults with autism as well as the increased funding will reap great rewards for the autism community. Perhaps valuable research can find a cause and a cure for autism, thereby eliminating a need for future Autism CARES Acts and answering the prayers of many families whose lives have been touched by autism.
“Rulers lead with my help, and nobles make righteous judgments.” Proverbs 8:16

Sunday, September 29, 2019

"To Protect and Serve"

Last month, two Northwest Indiana police departments announced initiatives to aid people with autism and their families. While these programs seem rather simple, the potential benefits could be significant in emergency situations. Moreover, these agencies demonstrated their caring and commitment to some of the most vulnerable citizens in their communities, which is certainly impressive and commendable.
On August 28, 2019, the Starke County Sheriff’s Office Facebook page posted an offer of free bumper stickers to families affected by autism or Alzheimer’s disease or dementia. Sheriff Bill Dulan noted that these stickers could be posted on homes or vehicles to give first responders a “Heads Up” in an emergency situation “that your child or loved one may need extra assistance.” These bumper stickers bear the symbol of the Starke County Sheriff’s Department and contain the following messages: “Emergency Responder: An occupant may have autism or special needs. May not respond to verbal commands” and “Emergency Responder: An occupant may have Alzheimer’s or dementia. May not respond to verbal commands.”
By providing these bumper stickers at no cost to families with special needs, the Starke County Sheriff’s Office shows their concern for those who may not be able to communicate in an emergency situation. Additionally, this simple method of identification may assist first responders in providing appropriate care and support to special needs people. Furthermore, these stickers offer peace of mind to families dealing with autism, Alzheimer’s disease, and dementia, knowing that their loved ones can receive the special care they need in a crisis.
While the Starke County, Indiana Sheriff’s Office provides free bumper stickers to help identify people with autism, the East Chicago, Indiana police now offer free identification bracelets for people with autism. On August 1, 2019, The Times of Northwest Indiana newspaper published an article written by Paul Czapkowicz titled, “Forces partner to aid autism patients,” explaining a plan by the East Chicago Police Department to help identify people with autism. [To read this article, please click here.] Working with the North Township Trustee’s Office, the police created the Emergency Identity Program. The township trustee’s office provides forms for parents of children with autism who wish to participate in the program. In addition, the agencies are currently working with the local school system to offer the program to students who have autism.
Parents who enroll their children with autism in the Emergency Identity Program will be given a lime green bracelet for their children to wear on their wrists, ankles, or shoes. These bracelets easily identify the wearers as having autism so that police officers can help them cope better in emergency settings. Additionally, North Township Trustee Frank Mrvan showed compassion for people with autism, hoping that the bracelets would have a positive impact instead of “having a stigma to them.” Participation in this program is voluntary, and families who opt to enroll will receive the identification bracelets at no cost to them.
As well as serving as an easily visible cue to first responders that the bracelet wearer has autism, the bracelets are numbered so that police can look up the person’s name, address, and phone number if needed. In addition, the agencies are collaborating with the local 911 dispatch center so that police could be notified in advance if they were going to the home of someone with autism. Yet another benefit of this program could be helping to find lost children who have autism since many children with autism wander from home, school, or other safe places. These bracelets could help police find these children and return them safely home.
Spearheading this initiative is East Chicago police officer Sgt. Justin Orange, Sr., who is the father of a child with autism. He states, “The reason why this was kind of near and dear to us was because I have a son with autism and there’s also another officer on our department who also has a son that has autism.”
In addition to developing the program to identify people with autism by using these bracelets, the East Chicago Police Department has worked with the Autism Society of Indiana to train officers in how to interact with people with autism and how to calm people with autism who may be agitated in an emergency situation. As North Township Trustee Frank Mrvan wisely notes, “With autism, very often there are triggers such as flashing lights and noises that escalate people, and their escalation turns to fight-or-flight.” Along with training police officers, the city has offered seminars for families of children with autism to explain procedures if the police were called to their homes.
Further demonstrating their commitment to helping people with autism, the East Chicago Police are working with the Autism Society of Indiana to provide the department’s squad cars with de-escalation kits. These kits include items, such as stress balls, stuffed animals, and spinners, to help calm people with autism who are overwhelmed by sensory stimuli or upset in a crisis situation.
At the time this newspaper article was written, more than one hundred children and adults with autism had already registered for the East Chicago Emergency Identity Program. Even more encouraging is that nearby communities are developing similar plans to help people with autism. Specifically, in Lake County, Indiana, the town of Munster has initiated a comparable program, and the city of Hammond has recently started their own program. In addition, North Township Trustee Frank Mrvan anticipates that the Lake County towns of Highland and Whiting will also develop similar programs to assist people with autism in the near future.
With the increase in the prevalence of autism, communities must develop plans to help people with autism and their families in emergency circumstances. Being able to identify people who have autism with stickers or bracelets could prove to be a simple yet effective way to assist with this issue. Moreover, training first responders how to interact with and to calm people with special needs could prove vitally important in emergencies. The Starke County Sheriff’s Office and the East Chicago Police Department clearly recognize the needs of people with autism, as evidenced by their recent initiatives designed to help this special needs population. Certainly, they embody the police motto, “To protect and serve,” through their dedicated efforts to help people with autism. Hopefully, more community agencies will follow their lead and develop programs to aid people with autism, especially in emergency situations when they need help the most.
“…help those in trouble. Then your light will shine out from the darkness, and the darkness around you will be as bright as noon.” Isaiah 58:10

Sunday, September 22, 2019

Breaks and Breakthroughs

Like many students with autism, Alex has a laminated card that reads, “I need a break” his therapist gave him a few years ago. These visual aids communicate an important need for those who have limited verbal skills or for those who simply may be too upset to speak. In addition, knowing that break time is available may also relieve stress. Considering how difficult communication, social interaction, and motor tasks can be for people with autism, certainly they need to know that taking a break is always an option. Over time, as Alex has mastered skills and learned how to cope with stress better, he has relied upon his break card less and less, needing fewer breaks and more easily verbalizing his needs.
In June, after writing this blog for nine years, I decided to take a break from writing at least for the summer. Frustrated with the lack of useful studies being done to help people with autism, I couldn’t find interesting research to share. In addition, I knew that my summer would be devoted to weaning Alex off an anxiety medication that drug companies had stopped manufacturing. Even though he has done well when we have taken him off other medications, we know that he deals with sensory issues as his nervous system adjusts to the changes. Specifically, everything sounds louder to him, and his sense of touch is more sensitive. I imagine that his nerves respond similarly to when numbing subsides after dental work or a foot “wakes up” after being “asleep.” At first, this sensory overload can even be painful until the nerves adjust.
Consequently, we have helped Alex adjust to the changes, keeping him from places where noises could bother him, and understanding that he may be irritable at times, dealing with the physical changes. While he has been adjusting to the medication reduction, I have been continuing to research, hoping to find ways to help him cope in a world that overwhelms him at times. After watching a webinar last month, I found a simple solution that has helped Alex tremendously.
In an online Facebook talk sponsored by TACA, The Autism Community in Action, Dr. Jerry Kartzinel explained the link between autism, anxiety, and adrenaline. He likened some with autism as being like rabbits, who flee when sensing danger, and others as being like lions, ready to fight when adrenaline rises. He recommended monitoring the pulses through fitness devices to observe rushes of adrenaline that cause heart rates to spike. Since all of his explanations made perfect sense to me, especially with my observations of how Alex reacts to anxiety, I began researching fitness trackers.
After comparing various features, I wound up getting a Fitbit Inspire HR (heart rate) for Alex at Target for less than one hundred dollars. Since he always wears a wristwatch, he was unfazed about also wearing a Fitbit on his wrist, especially since it offers data he finds interesting: time, date, steps and distance walked each day, and heart rate. While this Fitbit also records data related to sleep, we don’t have him wear it during the night, for fear it may impede his healthy sleeping habits. At the end of the day, we sync the Fitbit to an app on our iPads and can see graphs showing Alex’s heart rate throughout the day.
In the past month, whenever Alex seems agitated, we ask him to check his pulse on the Fitbit. He then calls out the number displayed, and typically his pulse is over 100 if he’s upset. Because he’s so attuned to his body and numbers, he understands the link between his emotions and his physical response measured by his heart rate. We remind him to get his heart rate down, and he will sit calmly, sometimes rocking, until his heart rate returns to a normal level. As we check his heart rate graph at the end of the day, we are rarely surprised because his numbers correspond to specific events at specific times during the day. Not only can we track any times he was upset marked by increases in his pulse, but we can also see increases in heart rate due to activity, such as coming downstairs for meals or excitement when his therapists come to see him. Moreover, we’ve discovered that he’s remarkably mellow, as evidenced by low pulses, most of the time.
A bonus feature of the Fitbit Inspire HR is the Relax mode, which has also proven quite helpful. The Relax feature flashes instructions on the Fitbit screen, telling the user to focus on breathing and the stars that move on the screen. Intermittently, the Fitbit will send gentle vibrations that softly buzz. According to the website Enabling Devices, “Vibration Therapy Tools are fundamental when working with sensory integration. Vibrating products are beneficial to special needs children especially for those with autism, ADHD, or sensory processing disorder. They can calm kids who need more sensory feedback or help train hypersensitive kids to tolerate more sensations.” Although one might think this buzzing would be annoying to someone with sensitive hearing and touch, Alex finds this gentle stimulation calming. After the two-minute Relax session is complete, Alex’s pulse will usually drop at least twenty beats.
While eliminating an anxiety medication has caused Alex to deal with sensory issues in the past few months, he has adapted remarkably well for the most part. Because he is aware of his physical needs, he usually knows when he needs to take a break. Recognizing the connection between his heart rate and stress has enabled him to be even more in tune with his body and to gain greater control when his adrenaline levels make him feel out of control. Once again, I’m convinced that God guides our path, as research led us to a simple device that has proven extremely helpful to our everyday lives. By keeping track of his heart rate, Alex is learning to cope with stress and better reflect the pure heart God has given him.
“Then Jesus said, ‘Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.’” Matthew: 11:28

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