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

Sunday, March 10, 2019

Censorship

Many autism parents have felt great frustration as the government seems to have little interest in pursuing why autism rates are rising rapidly, what causes autism, and what can be done to help those affected by autism. However, one Democratic congressman seems intent on making sure no one has access to information questioning potential connections to vaccines. Recently, U.S. Representative Adam B. Schiff from California sent open letters to the CEOs of Amazon, Facebook, and Google expressing his concern that these major Internet entities are promoting “products and content that discourage parents from vaccinating their children, a direct threat to public health.” [To read this letter, please click here.]

Describing these Internet sites as a “primary source of information” for many Americans, Congressman Schiff, indulging in hyperbole, urges these Internet companies to recognize their responsibility by not adding to this “growing public health catastrophe.” Apparently not trusting his constituents nor any other Americans to use critical judgment when seeking information online, Rep. Schiff wants to ensure any information contradicting the complete safety of vaccines is eliminated from Amazon and social media sites, including YouTube, Pinterest, and Instagram, as well as Facebook and Google. He worries that “even parents and guardians who seek out accurate information about vaccines could unwittingly reach pages and videos with misinformation” and be unable to make decisions for themselves regarding vaccine safety. By presenting only one side of the issue, he hopes to make all parents compliant in vaccinating their children.

Jumping on the pro-vaccine bandwagon, CNN business writer Jon Sarlin posted an online article, “Anti-vaccination conspiracy theories thrive on Amazon,” on February 27, 2019. [To read this article, please click here.] Like the congressman, the writer indicates concern for those who may not be able to think for themselves and wants to limit the information to only one point of view. He states, “But perhaps more disturbing from a public health and misinformation perspective, there were also books [on Amazon] that people simply searching for information––new parents, for instance––could mistake for something offering neutral information accepted by the public health community…” However, insisting upon banning books sets a dangerous precedent for our society.

Not surprisingly, when Amazon removed anti-vaccine documentaries from its streaming service, Amazon Prime Video, CNN gleefully reported this news and seemed to take part of the credit for this act of censorship. On March 1, 2019, Jon Sarlin wrote another article, “Anti-vaccine movies disappear from Amazon after CNN Business Report.” [To read this article, please click here.] While the reporter was pleased that Amazon had removed these videos, he expressed concern that Amazon continues to sell books offering an alternative position.

According to CNN, a Facebook spokesperson explained that they have “taken steps to reduce the distribution of health-related misinformation on Facebook, but we know we have more to do. We’re currently working with outside experts on additional changes that we’ll be announcing soon.” One wonders what constitutes “health-related misinformation” and what medical training these “outside experts” have. In a more decisive action to limit point of view, Pinterest announced a temporary ban to block all vaccine searches. Clearly, social media is acceding to the pressure put to bear by those who want only pro-vaccine perspective presented.

In another online article posted March 7, 2019, Wired describes changes Facebook will make. [To read this article, please click here.] In “Facebook Will Crack Down on Anti-Vaccine Content,” Louise Matsakis explains that Facebook has announced that they will no longer promote anti-vaccine information through ads or recommendations. Furthermore, they will make this topic less prominent in search results and news feeds, reducing the rankings of pages and groups that “spread misinformation about vaccines.” In addition, Facebook is examining ways to provide information from “expert organizations” regarding vaccines.  Similarly, Instagram will not recommend content or hashtag search results they deem as “vaccine misinformation.” This suppression of information should be worrisome to those who value critical thinking. As novelist George Orwell predicted, through government officials, the mainstream media, and social media that want to dictate what is “misinformation” and what is not, “Big Brother is watching you.”

To give Rep. Schiff his due, he probably has good intentions and believes that he is protecting those he deems not able to think for themselves. In his press release regarding his letters to the social media giants, he strongly asserts his faith in vaccines: “The scientific and medical communities are in overwhelming consensus that vaccines are both effective and safe. There is no evidence to suggest that vaccines cause life-threatening or disabling diseases, and the dissemination of unfounded and debunked theories about the dangers of vaccines pose [sic] a great risk to public health.”

However, Rep. Schiff apparently has not read the information on the government’s own Centers for Disease Control and Prevention’s website, or he would realize that evidence indicates the potential for vaccine harm. [To access this site, please click here.] Specifically, the MMR (Measles, Mumps, Rubella) vaccine can cause “deafness, long-term seizures, coma, or lowered consciousness, and brain damage.” The Varicella (Chickenpox) vaccine can cause “infection of lungs (pneumonia) or the brain and spinal cord coverings (meningitis).” The DTaP (Diphtheria, Tetanus, and acellular Pertussis) vaccine can cause “non-stop crying, for 3 hours or more (up to about 1 child out of 1,000)”; “seizure (about 1 child out of 14,000)”; and ‘high fever, over 105 degrees F (about 1 child out of 16,000).” In addition, the CDC site warns of the potential side effects with any vaccine: “As with any medicine, there’s a very remote chance of a vaccine causing a serious injury or death.” Clearly, vaccines are not as safe as Rep. Schiff and the media would like everyone to believe. Parents should be aware of potential risks––no matter what they are––before they vaccinate their children.

One even wonders why the media wants to remove the alternative views. In the Wired article, the writer cited information in The Atlantic that noted the “majority of anti-vaccination content on Facebook appears to originate from only a handful of fringe sources.” While I question that assessment, if they believe this to be true, they should have nothing to fear from a few they deem as unreliable sources. Moreover, despite Rep. Schiff’s concerns that anti-vaccine information is leading to a “growing public health catastrophe,” there appears to be no evidence of this impact.

As Louise Matsakis notes in the Wired article, “It’s not yet clear whether the proliferation of anti-vaccination content online has led to a significant decrease in vaccination rates in the United States.” Specifically, she cites CDC data that shows that the number of children under the age of three who have received the first dose of the MMR vaccine “has remained steady for years.” If, indeed, those anti-vaccine views essentially have no effect, why must they be silenced?

Until a definitive cause has been established for autism, nothing should be ruled out completely. In order to make informed decisions, we must have all the information, not just what politicians and the media have determined that people in our free society can know. We must have access to many viewpoints without censorship and continue to seek the truth. As Jesus said in John 8:32, “And you will know the truth, and the truth will set you free.”

“Then everyone who has eyes will be able to see the truth, and everyone who has ears will be able to hear it.” Isaiah 32:3

Sunday, March 3, 2019

Dealing with Detours

“Detour, there’s a muddy road ahead. Detour, paid no mind to what it said. Detour, oh, these bitter things I find. Should have read that detour sign.” ~ “Detour” by Paul Westmoreland

In last week’s blog entry, I described how Alex became agitated during music therapy and responded by pounding on the therapy room door. Essentially, he was probably trying to communicate that he wanted to get out of that room. He was overwhelmed by sensory stimuli––nearly falling out of his unsteady chair and adapting to a new fan––along with having to wait while listening to others’ concerns about the office bathroom being out of order. After redirection to use his hands to play bongos instead taking out his frustration on the door, he was able to calm himself and finish the session successfully.

Although I could have dismissed that situation as an isolated incident, I know Alex well enough to be certain that he would have trepidation about the next music therapy session. Not wanting him to use the door for a percussion instrument again, I considered ways to prevent a repeat performance. As Alex’s parents, Ed and I have always tried to smooth his path in life by removing any obstacles we can and by preparing him for those we cannot remove. However, we also know that life often presents sudden detours that he may have to endure.

When Alex was younger, he would become anxious if he saw a detour sign along the road. He knew this meant that his beloved routine routes would change, and that made him fret. To ease his concerns, I would remind him of an old song my dad likes to sing. From the back seat of the car, we would hear Alex imitating Grandpa by singing in a deep voice, “Detour, there’s a muddy road ahead…” Somehow singing about the detour calmed his fears and made him less worried about having to change course.

If a simple song could help him cope, I knew that Alex could learn other ways to deal with situations that take him by surprise. During his behavioral therapy session last week, we discussed with his therapist the circumstances that led up to Alex getting overwhelmed at music therapy. While his therapist sympathetically understood why Alex had become upset, she also helped him to understand that he can control his reactions when he feels out of control. After working with Alex for more than five years, she not only knows him well, but she also knows how to bring out the best in him.

As she went through the chain of events that led up to his upset, she offered him ways to keep himself calm through deep breathing, repeating positive affirmations (Alex’s favorite: “Everything will be all right.”), and asking for help. By asking him questions, she was able to discern what was really bothering him. No, the new fan did not upset him; in fact, he liked it. Yes, he was upset about the chair tipping and worried that he might fall. In addition, she discovered something he had not told me: the room was too hot. Since Alex is very sensitive to temperature changes, that alone could have set him off.

After getting input from Alex, she and I worked with him to brainstorm ways to make the next session better for him. Since the heat seemed to bother him, I told him that he would wear a short-sleeved shirt instead of a long-sleeved shirt for the next session. In addition, since he didn’t like having to wait, we would plan to get there right before the scheduled time instead of a few minutes early. Finally, his therapist, who is familiar with the music therapy office from having meetings there, suggested asking his music therapist to bring a chair from the conference room. She remembered that those chairs were sturdier than the folding chair in the session room and less likely to tip. After talking with her, both Alex and I felt more confident about going to the next music therapy session.

Because Alex’s music therapist has also worked with him for more than five years, I knew that he would be flexible about making changes to help Alex. After sending him an email explaining Alex’s concerns and the potential solutions we had brainstormed, he immediately called me on the phone and enthusiastically agreed with our ideas. Moreover, he had a better suggestion: instead of moving a chair from the conference room, he would move Alex’s sessions to the conference room. Since that room is larger and has a table for Alex to set his drink, as well as sturdier chairs, he thought the conference room would be a good change. If the new setting did not seem to help, he kindly offered to resume providing Alex’s therapy sessions in our home.

After telling Alex about the new venue for music therapy, he seemed a bit nervous about the change. However, I explained the advantages of the conference room, and he was willing to try. Just to make sure we were aware he wasn’t thrilled about this detour, he waved “the claw,” a gesture he uses to let us know he’s not happy by lifting his arm, bending his wrist at a 90 degree angle, and shaking his hand in the air in a way reminiscent of the 80’s “Walk Like an Egyptian” dance. After waving “the claw” once at me and once at his music therapist, he was cooperative, and his therapist described the session as “fantastic” with no other negative behaviors. Alex had detoured into the conference room and decided the new route was more scenic than the old one. By being understanding and willing to accommodate Alex’s sensory issues, his therapist was rewarded with a cooperative client.

Since autism and anxiety make navigating life more difficult for Alex, he relies upon the adults he trusts to help him cope with circumstances that make him nervous. We are certainly blessed to have a wonderful support team of professionals who not only sympathize with our concerns but who also actively seek ways to make Alex’s life easier and to teach him how to deal with the unexpected situations that make him uneasy. Sometimes, something as simple as changing setting can make a difference, assuring Alex that, indeed, everything will be all right.

“Show me the right path, O Lord; point out the road for me to follow.” Psalm 25:4

Sunday, February 24, 2019

Searching for Signs

Last Thursday, I was sitting in the waiting room during Alex’s music therapy session when I heard a knocking sound. As I listened, I could tell that the sound was coming from the direction of the therapy room where Alex was supposed to be singing and playing keyboard. At first I thought perhaps he or his music therapist might be playing a drum, but then I realized the sound was definitely a hand knocking on a door, and I was certain that Alex was responsible for the insistent knocking.

Although I never want to interfere with his therapists’ sessions, I also want to provide back-up for them if he’s being uncooperative. Consequently, I quietly walked back to the therapy room and stood outside the door, listening and trying to assess what was happening. Standing in the hallway, I could hear Alex continuing to knock on the closed door from the inside of the room as his therapist gently tried to redirect his behavior. Since Alex wasn’t responding, I decided to knock on the door, let myself in, and try to help the situation.

While Alex seemed a bit surprised to see me, his therapist looked relieved that I was there. He explained that Alex had been fine until his chair had tipped and he had almost fallen out of it. To be honest, that folding chair had worried me the first time I saw it because it’s not particularly sturdy. Because of OCD, Alex tends to fixate on things that happen and takes longer to get over them. He was likely replaying that moment of fear of falling, despite his therapist’s reassurances that he was all right.

When his therapist asked Alex for a reason why he was knocking on the door, Alex kept responding, “Nothing.” I suspect that Alex may have been dealing with anxiety by hitting the door instead of his therapist (which is a good thing) or seeking attention or trying to escape the setting by knocking on the door and hoping to be let out of the room. Perhaps a combination of these was the catalyst for Alex’s insistence on knocking on the door. When Alex is upset, he has trouble explaining what he’s feeling. However, his therapist’s calm approach didn’t seem to make Alex stop his behavior.

Using my middle school teacher voice, I firmly told Alex, “Knock it off!” After asking him what he was doing and getting no reply, I told him that pounding on the door was a dumb thing to do because it was annoying and could hurt his hand. Wondering if his therapist thought I wasn’t handling Alex properly because I was too blunt, I looked over Alex’s shoulder to see his therapist covering his face, trying to conceal his laughter from Alex. At least he found me amusing and didn’t seem to disapprove of my methods. On the other hand, Alex knew I wasn’t happy with his behavior, so he stopped knocking on the door, and he wasn’t laughing.

Then his therapist mentioned that Alex seemed to need to move his hands, so he had offered for Alex to give him “high fives,” but Alex would only lay his hands gently over his therapist’s palms. That was actually a good sign of self-control on Alex’s part: he didn’t use this opportunity to slap his hands hard to let his therapist know he wasn’t happy. Instead, I suggested that his therapist get one of the bongo drums for Alex to play and get rid of his nervous energy. While Alex wasn’t keen on the idea at first, I asked him to play fifty times with his left hand, then with his right hand, then with both hands. By incorporating numbers into the activity, he was willing to cooperate. After some drumming, Alex was calm and ready to finish the session on a good note by singing the familiar “Goodbye” song that ends every therapy session.

Even though I felt bad that Alex had exhibited challenging behaviors during the session and that I had intervened, I sensed that his therapist welcomed my support and some insights I shared. For example, I noticed that the therapy room has a new fan, which may have over-stimulated Alex with its appearance, sound, and feel since he is especially sensitive to touch and sound. In addition, before the session ever started, Alex’s patience was tested because he had to wait for his therapist, who needed to finish his lunch quickly and to text another client’s mother, which meant that Alex’s session didn’t start exactly on time, as he prefers. Also, the bathroom at the office was out of order, which understandably seemed to upset all the employees, who were discussing this in the waiting room in front of Alex. Even though he didn’t need to use the restroom, Alex seemed concerned that other people weren’t happy about the broken toilet.

While knocking on the door wasn’t the right thing to do, Alex was so overwhelmed that he didn’t know what to do. By stopping to analyze the situation, I could figure out the source of his behavior, redirect him, and reassure him that everything would be fine. Moreover, I followed my motherly instincts––which I know God directs––to go back to the therapy room not only to support his therapist but also to support Alex. I had read the signs correctly.

The next day, I had been grocery shopping and realized that I had lost my credit card. After a quick search of my purse, our house, and my car––aided by my perpetually calm and logical husband––I decided to go back to the store to see if I had dropped it. After retracing my steps in the parking lot and store, I went to the customer service desk to see if someone had found my card. Disappointed that they did not have my card, I began planning to call the credit card company to cancel my card. However, I decided that I would give the parking lot one more search.  As I prayed for God to help me find my credit card, I decided to stop and stoop so that I could get a better view. Suddenly, I saw a ray of sun shining on something on the ground. Walking over, I realized that the sunshine was reflecting off the metal chip of my credit card lying on the parking lot where my car had been parked previously. I don’t know how God could have answered my prayer any better or more dramatically––as if the heavens opened up and, thankfully, showed me the way.

Although I sometimes think that God is too busy to be concerned with the minute details of my life, last week’s incidents reminded me that He is always present. If God can give me signs about how to handle Alex or how to find a lost credit card, surely I can trust that He will always show me the paths I need to take to fulfill the life He has planned. All I need to do is be still, pray for help, and wait for His guidance.

“Now then, stand still and see this great thing the Lord is about to do before your eyes.” 1 Samuel 12:16

Sunday, February 17, 2019

Virtual Reality as Therapy for Autism

Researchers estimate approximately one fourth of children who have autism struggle with phobias that can negatively impact their daily lives. Thanks to modern technology, researchers have discovered a promising new method of treating these extreme fears. Using virtual reality therapy, researchers at Newcastle University in England in conjunction with Third Eye NeuroTech have created interactive computer-generated scenarios to help children with autism deal with their fears.

Last week, Science Daily published an online article regarding this research that was also published on February 14, 2019, in the Journal of Autism and Developmental Disorders and Autism in Adulthood. [To read “Immersive virtual reality therapy shows lasting effect in treatment of phobias in children with autism,” please click here.]

For this therapy, known as the Blue Room treatment, children and adults with autism were exposed to a 360-degree virtual environment related to their specific fears. In real life, the people with autism would have difficulty coping with these frightening scenes. As researcher Dr. Morag Maskey notes, people with autism may have trouble imagining scenes, but the virtual reality allows them to visualize these scenarios while they are provided support to deal with their fears. Accompanied by a psychologist, the children used an iPad to navigate and control completely the situations they were shown. In addition, they did not have to wear goggles, unlike some forms of virtual reality.

Some of the phobias addressed in this treatment included fears of the dark, walking into rooms, school, public transportation, elevators, dolls, balloons, dogs, and wasps and bees. For the first study, 32 children with autism who were between 8 and 14 years old were divided equally into two groups. The first group began treatment in the Blue Room immediately, whereas the second group, acting as the control group, waited six months to begin the Blue Room treatment. The children spent four sessions per week in the Blue Room with a psychologist observing personalized scenarios related to their individual phobias. Their parents could also observe these sessions through a video link. After these treatments, the parents provided opportunities for their children to face their fears in the real world.

Two weeks after the virtual reality treatment, 25% of the children in the first group were able to cope with their specific phobias. Six months later, the positive effects of the therapy remained, as 38% showed improvement, and only one child displayed an increase in the intensity of the phobia. In the second group, 40% showed improvement two weeks after completing the treatment, and 45% retained the benefits of the therapy six months later.

In a similar but smaller study, eight adults with autism ranging in age from 18 to 57 participated in four twenty-minute sessions in the Blue Room interacting with scenarios personalized for their specific phobias. Six months later, five of the adults retained the benefits of this therapy.

While the research team plans further studies to see how long lasting the effects of this therapy are and to discover why some children and adults do not respond to this treatment, the positive results are encouraging. As Dr. Maskey states, “It is incredibly rewarding to see the effect it [the Blue Room treatment method] can have for some, overcoming a situation which just a week previously would have been so distressing.”

Moreover, the leader of the study, Professor Jeremy Parr from the Institute of Neuroscience at Newcastle University, emphasizes how life changing the effects of this therapy could be. He states, “For many children and their families, anxiety can rule their lives as they try to avoid the situations which can trigger their child’s fears or phobia.” Furthermore, he adds that this treatment “offers hope to families who have very few treatment options for anxiety available to them.”

Since extreme fears can produce debilitating anxiety in people with autism, potentially triggering aggressive panic attacks or causing them to avoid situations they fear, addressing phobias in a supportive way could have lifelong benefits. Fortunately, the researchers at Newcastle University and the technology experts from Third Eye NeuroTech have discovered that virtual reality may help children and adults with autism successfully overcome phobias so that they may face everyday reality fearlessly.

“I prayed to the Lord, and He answered me. He freed me from all my fears.” Psalm 34:4

Sunday, February 10, 2019

Social Skills for Social Media

While social media offers opportunities for parents of special needs children to share information and support, this modern convenience also can allow people to be hurt by intentionally or unintentionally unkind comments. When parents of children with autism make rude remarks, I wonder if they, like their children, may be on the autism spectrum themselves and have difficulty with social skills. Others may be sleep-deprived from taking care of children who stay awake all night, and others are likely understandably upset by the stress of their circumstances. Nonetheless, in order to help each other, we need to remember the power of words and strive to be kind and helpful in what we say to others.

Over the years, I have participated in various online support groups for parents of children with autism. A great deal of what I have learned about autism and parenting children with special needs has come from those wise and caring parents who were willing to share what they have learned from their experiences. Remembering the thoughtfulness of those parents who helped me through the early years of autism, I strive to offer the same support and information I received to other parents of children with autism. However, I’m sometimes surprised when parents of young children with autism deem themselves experts and fail to value advice given by veteran parents. Nonetheless, many of us still share our experiences, hoping to help others.

Last week, a parent shared serious concerns about a child with members of an online support group and asked valid questions while seeking information. Instead of offering sympathy or empathy to a parent in crisis, some seemed more intent on critiquing parenting skills. Perhaps if they couldn’t be nice, they should have been quiet instead. One person kept asking nosy question after nosy question, more like an investigative reporter than a supportive presence. In a sense, this interrogator seemed to be trying to gain all the attention by asking irrelevant questions. At one point, I was waiting for this person to ask the silly question from the movie The Breakfast Club: “Can you describe the ruckus?” After all those questions, this person, who is not a parent, had nothing helpful to offer, which confirmed my suspicion of simply seeking attention.

Another issue that arose in this online conversation was the topic of medications, which is a touchy subject in autism. Certainly, many parents would prefer not to medicate their children. However, for some with autism, medication proves essential to well-being and safety, addressing depression, anxiety, and aggression. Some parents of younger children with autism eschew the use of medication, yet they don’t realize the need until their children get physically bigger and stronger, becoming more difficult to handle when they have meltdowns. Those who tout only using behavioral therapy need to remember that therapy takes time to have positive effects. I know this because Alex has been in behavioral therapy for more than six years with a fantastic therapist; the benefits take time to achieve. Moreover, some parents are on long waiting lists for therapists and cannot get the help they need immediately. Therapy may only be one piece of the puzzle.

Later, some caring parents brought compassion to the discussion. Addressing the parent by name, offering not only good, specific suggestions but also sharing their own experiences and empathy, these parents provided what the parent in crisis was seeking: understanding and guidance. Perhaps these parents reflected upon their own situations and remembered what they wanted to know in similar situations and what had been helpful to them. By being gracious instead of critical, they offered the support that should always be present in a social media support group. Responding to their kindness, the parent in crisis was equally gracious, thanking everyone for the advice and support.

Last week, the Indiana Resource Center for Autism at Indiana University posted one of their terrific social stories on their Facebook page. Written by Kristi A. Jordan, these short stories intended for children with autism provide helpful tips regarding how to interact with others. For Valentine’s Day, the social story suggested, “It is nice to make a card for every person, even if you do not like them. If you do not like someone, remember that is a secret. You should think it, but don’t say it. Keep that thought a secret.” Perhaps, all of us, not just children with autism, should heed that advice. As Alex’s behavioral therapist reminds him in a useful handout: “Before you say something, THINK: Is it true, helpful, informative, necessary, and kind? If not, keep it to yourself.”

Addressing the issue of how to deal with rude people on social media, especially trolls, autism mom Cathy Jameson recently wrote an outstanding essay for Age of Autism. [To read this essay, please click here.] While she specifically mentions the heated debate regarding vaccines, she offers good suggestions for handling any topics of contention. These provided good advice for me at a time I was ready to straighten someone out on social media for making comments I saw as hurtful and unfounded. Instead, I chose discretion and opted not to engage in the debate. As Cathy Jameson advises: “Sometimes it’s best to just walk away and let it go.”

However, she also offers helpful recommendations when engaging in dialogue with others: “When you do say something, I’d suggest doing so without emotion and name calling. When one resorts to name calling, the chance to politely prove a point is immediately lost.” Moreover, she offers a valuable tenet for dealing with others online that also applies in real life: “Encourage people. It’s simple and what we prefer to do.” We may not always agree on every topic, but we can be agreeable in how we treat others.

"Do you have the gift of speaking? Then speak as though God Himself were speaking through you. Do you have the gift of helping others? Do it with all the strength and energy that God supplies. Then everything you do will bring glory to God through Jesus Christ. All glory and power to Him forever and ever! Amen." 1 Peter 4:11

Sunday, February 3, 2019

Testing Testing

As a classroom teacher for more than thirty years, one of the few aspects of my job I truly disliked was giving standardized tests to my students. In fact, retiring from teaching brought relief that I would no longer have to give these dreaded assessments. Knowing these evaluations were often worded in ways that were confusing to my students or bored them with long reading passages that failed to hold their interest, I questioned how accurately these tests could measure their abilities. As I watched some students who lacked motivation rush through the tests simply to get done and others struggle through every minute trying to finish in time, I knew their scores would not reflect what they really knew. Moreover, the general atmosphere of anxiety prevalent during testing among students and staff was upsetting and counterproductive.

My mistrust of standardized tests has only been heightened as the parent of a child with autism. Having been present for most of Alex’s evaluations, I know that they cannot measure accurately what he actually knows and can do. Consequently, on traditional intelligence tests, he scores quite poorly. Nonetheless, we place little value on the IQ values assigned to him, knowing that Alex is smart in ways that the tests fail to measure.

Recently, an enlightening article in The Atlantic addresses the shortcomings of using traditional cognitive testing with people who have autism and offers promising alternative methods. In “IQ Tests Are Biased Against People With Autism,” published December 31, 2018, author Nicholette Zeliadt notes, “…research has confirmed that some autistic people––especially those who speak few or no words––have abilities that standard tests of intelligence underestimate or overlook.” [To read this article, please click here.] In addition, the subtitle of this article states, “For those with poor verbal and motor control, traditional intelligence exams can be a faulty way to measure real cognitive ability.”

Recognizing problems of using traditional testing methods with people who have autism, scientists have recently considered new ways to test cognitive skills. Some have adapted existing tests, while others have developed new tests. In both cases, the goal has been making tests easier to complete for people with autism. Other researchers have employed technology that measures eye movement and brain activity to evaluate skills. While using technology may produce more accurate results, the expense and lack of portability make these methods less accessible.

Although experts cannot reach a consensus about which tests are most useful in evaluating people with autism, researchers note that none of the most commonly used assessments qualify as “a particularly good fit.” In addition, interpreting scores often proves problematic when assessing people who have autism. Many issues commonly associated with autism make testing difficult, such as anxiety, social-communication challenges, restricted interests, and lack of motivation to do boring tasks. Furthermore, poor fine motor control makes pointing, which is required in some tests, difficult, and tests lasting nearly an hour are too challenging for those with attention issues. As Beth Slomine, neuropsychologist at Kennedy Krieger Institute in Baltimore, Maryland, candidly explains, “…the tasks we have that measure cognitive ability are often boring, [and] the tasks don’t always measure what we think they’re measuring.”

At Boston University’s Center for Autism Research Excellence in Massachusetts, researchers have adapted testing for children with autism. To make the process less stressful, the child does not interact with the evaluator. Instead, two pictures are shown side by side on a screen as a recording instructs them to “Look!” Additionally, to keep them interested, pictures of beloved character Thomas the Tank Engine and videos of rockets launching are shown. According to the director of the Center, Helen Tager-Flusberg, “We did that to keep them engaged, to keep them looking––it doesn’t feel like a test.”

Using technology to observe eye tracking, researchers at Bar-Ilan University in Ramat-Gan, Israel, monitor involuntary eye movements as a method of testing people with autism. Under the direction of Yoram Bonneh, associate professor of vision science and optometry, the researchers study “tiny flicks of the eye as it jumps toward something of interest” in people with autism to assess word comprehension. After words are spoken or shown on a screen, two pictures are displayed side by side, with only one matching the given word. Eye movement toward the picture demonstrates word comprehension. This research indicates that adults with nonverbal autism perform as well in this testing activity as typical adults do.

In addition, these researchers show multiple choice questions and answers on a screen without reading them aloud. When the person’s eyes stop on a correct answer, the researchers use this behavior as a measure of cognitive ability. After testing a group of young men with autism who had minimal verbal skills and were thought to be illiterate, the researchers discovered through the testing that these men could actually read. Consequently, this testing method not only proved the young men had the ability to read and understand written text but also demonstrated that their skills had previously been underestimated.

At Rutgers University in Newark, New Jersey, scientists have been using EEGs to test minimally verbal children with autism. As the children watch images immediately followed by hearing a word that may or may not match the picture displayed, researchers use the EEG technology to look for brain activity to indicate the recognition of the image and word. Through this form of testing, the research suggests that the children don’t always connect the words and pictures. Another theory is that children with autism may use other parts of their brains to process what they have seen and heard than typical children do. Nonetheless, using brain wave technology allows scientists to glimpse how the minds work in children with autism.

Clearly, research shows the importance of creativity when assessing people who have autism, considering their special needs and the differences in the ways their brains process information. As Charles A. Nelson, professor of pediatrics at Harvard University and Boston Children’s Hospital notes, “These kids we think are very low functioning, very nonverbal, may have more going on upstairs then we’re giving them credit for.” Indeed, using traditional methods to question those with autism may produce questionable results. Instead, parents, educators, and professionals should seek better ways to assess the skills of people with autism, and more importantly, they must never underestimate the abilities of those whose brains work in mysterious––and perhaps even superior––ways.

“But there is a spirit within people, the breath of the Almighty within them, that makes them intelligent.” Job 32:8

Sunday, January 27, 2019

Book Review: Common Man, Extraordinary Call

After a child is diagnosed with special needs, many parents seek advice from others in similar circumstances who can share the wisdom of their experiences. In Common Man, Extraordinary Call, released last week and available from Amazon and Barnes and Noble, special needs dad Jeff Davidson offers an honest and clearly written guide for fathers of special needs children. As the father of an adult son, Jon Alex, who was diagnosed with cerebral palsy, intellectual disability, and nonverbal autism, he and his wife, Becky, generously share what they have learned. [Special thanks to Becky Davidson and Kregel Publications for providing me an advance complimentary digital copy of this book.]

Although he never served in the military, the author explains that he greatly respects those who have served our country. Consequently, he uses military terminology throughout this guide for fathers who have unwittingly been drafted into the troops of special needs dads. In each chapter, he offers practical ways to deal with issues through a section titled “Mission Critical,” in which he provides checklists detailing what needs to be done.

As he provides leadership to the dads on the front lines, Jeff Davidson explains the tactics in a casual, conversational tone that is reassuring. Sharing candidly what he has learned along the way, he reveals a keen sense of audience, engaging the reader through direct address: “You” and “Dad.” Moreover, each chapter ends with "A Story from the Front Line,” in which special needs dads share their own stories, or an “Encouragement from the Homefront,” a letter from Jeff’s wife, Becky, offering support to special needs dads. In addition, the book also provides a helpful study guide at the end, reviewing important points in the book, as well as thought-provoking discussion questions for further reflection.

One of the issues the author tackles in the first chapter is the problem of denial. In fact, he admits that he refused to say that his son had autism until three years after his son’s diagnosis. However, he notes: “When I finally accepted the truth, our world shifted, and life became easier.” Having struggled with denial himself, he strongly urges special needs fathers to ask God for help in accepting their circumstances.

In addition to asking God for help, the author also advises asking others for assistance when needed. Enumerating all the various roles fathers must play in providing for their families’ physical, emotional, spiritual, and financial needs, he understands that special needs dads may feel overwhelmed. While fathers may be reluctant to impose on others for help, he explains, “If we forgo their help, we are robbing them of the opportunity to be a blessing.”

Moreover, the author encourages special needs parents not to isolate themselves from others. While raising a child with special needs fills life with challenges, he urges, “We have to be willing to let people into our lives. They need to know what your reality is like.” Although allowing others to see what life with a special needs child is really like may be uncomfortable, he assures the benefits are worth the efforts. Ultimately, others can gain understanding as well as love and respect for people with special needs by interacting with families who are raising special needs children.

Perhaps one of the most powerful chapters of the book, Chapter 8, “Emotional Land Mines,” candidly describes the difficulties special needs parents must consciously avoid. Specifically, he warns against envying other people’s lives and advises special needs parents to stop comparing their lives to those of others. Additionally, he describes the dangers of fear, self-pity that can lead to despair, futile attempts to assign blame for the child’s disability, and the sense of being cheated. Instead, he suggests, “…the power over every circumstance depends upon my choice of perspective.” Similarly, he addresses the bitterness and grief associated with missed milestones, beautifully noting the importance of a positive perspective: “Joy can be found in the simple successes, and contentment in the seemingly insignificant moments.” Furthermore, in dealing with the death of dreams that parents of special needs children face, he admonishes abandoning our expectations because “God has plans and dreams for our children, too.”

Yet another key point Jeff Davidson raises is the importance of teaching our special needs children how to overcome fear. He stresses that parents must reassure their children that they can confidently trust God as a source of wisdom, protection, and provision. As an additional reassurance to parents, he reminds us, “God will always be there for your children, even if you can’t be.”

Sadly, Jeff Davidson passed away unexpectedly and went to be with the Lord in May 2017. In the preface of Common Man, Extraordinary Call, his wife, Becky, explains Jeff’s desire to help special needs families, especially fathers of children with special needs. Moreover, she notes that writing and publishing this book fulfills his dream “to speak directly to the men he knew were so in need of hope.” Indeed, Jeff Davidson’s words of faith and love will continue to inspire others while sharing the hope he had found in the Lord.

“The master said, ‘Well done, my good and faithful servant. You have been faithful in handling this small amount, so now I will give you many more responsibilities. Let’s celebrate together.’” Matthew 25:23

Sunday, January 20, 2019

Small Setbacks

A few weeks ago, when we took Alex for his annual physical, his doctor proclaimed him to be in excellent health. Although we suspected this to be true, for Alex had not needed to go to the doctor since his last annual exam a year ago, we were delighted to get such a good report. Nonetheless, the doctor did have one issue for Alex (and us) to work on: eating more calories per day and trying to gain about fifteen pounds. While many of us would be ecstatic to have our doctors give us that advice, we knew this could be challenging for Alex, whose metabolism and level of activity keep him naturally thin. Along with the food aversion issues he’s struggled with for more than a year and a half that caused him to lose weight, gaining weight for Alex is as difficult as losing weight is for most people.

Nonetheless, we took the doctor’s suggestion to heart, trying to find ways to get Alex to eat more and consume more calories. Fortunately, Alex made a real breakthrough around Christmas, suddenly eating a greater variety and quantity of foods, returning to his past habits of eating healthy, instead of limiting himself to cold and smooth foods. He even began asking for old favorites, such as meatloaf and shrimp, and happily devoured them. Thanking God for this Christmas miracle, we thought Alex had made a big breakthrough in overcoming the food aversion that not only made him not want to eat certain foods but also triggered panic attacks at the kitchen table.

Because his doctor understands Alex’s issues well, he recommended adding nutritional supplements, namely Ensure or Carnation Breakfast Essentials, to Alex’s daily diet. Although both of these products contain milk, to which Alex has a dietary sensitivity, I was willing to take a chance that their benefits outweighed the potential concerns about giving him milk products in these supplements. After I added Carnation Breakfast Essentials powder in Classic French Vanilla flavor to Alex’s nondairy shakes made of Rice Dream ice “cream” and coconut milk beverage and strawberries, he seemed to like the taste and was willing to drink three of these shakes every day. I thought we had found a great way to get some calories into him easily.

However, after a few days of these shakes, Alex began complaining of headaches. While I suspected the milk in the nutritional supplements might have been the culprit, I thought a few more days wouldn’t hurt. I was wrong. The more days Alex had the powdered milk supplements, the more irritable he became. Then he started complaining of stomachaches. Although I was fairly certain the source of his pain and grouchiness was milk in the doctor-recommended nutritional supplement, I knew we had to test this theory by eliminating it from his strawberry shakes. Once I removed the milk product from his shakes, Alex stopped complaining of headaches and stomachaches, and he stopped being cranky, which was probably a result of not feeling well. Consequently, we had to abandon the doctor’s simple plan for adding calories and find other ways to help Alex gain weight.

About the same time, and probably not coincidentally, Alex’s wonderful progress in eating a variety of foods was followed by a regression. Unfortunately, he wanted to return to the cold and smooth diet, favoring applesauce, dairy-free yogurt, and non-dairy pudding. Between the bad reaction to the nutritional supplements and the return of food aversion, I was terribly frustrated by these setbacks, even though they were relatively small. Knowing that Alex has an appointment in a few weeks with his doctor to monitor his weight, I am feeling pressure to make sure he puts on some pounds to show that I’m putting forth effort.

Feeling a bit defeated and disappointed, I knew what I had to do. Reminding myself of Philippians 4:13, “I can do all things through Christ who strengthens me,” I resumed my usual determination and began researching other ways. Knowing that Alex likes pudding, I found a great and simple-to-make recipe for peanut butter pudding that can easily be adapted with coconut milk. Full of calories and protein, it offers Alex what he needs. In addition, the recipe came from one of his favorite chefs, the late “Mr. Food,” whom Alex loves to imitate by repeating his motto in a deep voice: “Ooh, it’s so good!” I knew that Alex would be willing to try this new food, especially, if we both said Mr. Food’s motto before he ate it. Fortunately, the peanut butter pudding turned out delicious, and Alex loves it because it is, indeed, “Ooh, so good!”

In addition, I found a different nutritional supplement to try that uses plant proteins instead of milk proteins. While I’m not sure whether Alex will like the taste, we’ll give it a try next week. In the meantime, I keep praying that he’ll resume his healthy and varied diet, as we witnessed the week after Christmas. However, I also know that I need to remain upbeat and calm about Alex’s eating habits so that he doesn’t pick up on my anxiety and add it to his own. If nothing else, I am tenacious about making sure Alex is healthy and happy, and I won’t allow these small setbacks to deter that ultimate goal. Most importantly, I know that God has a plan for Alex, and as the Great Healer, He will make certain that Alex gets everything he needs.


“But as for you, be strong and do not give up, for your work will be rewarded.” 2 Chronicles 15:7

Sunday, January 13, 2019

Benefits of Coconut Milk

Like many people with autism, Alex has shown sensitivity to regular milk in food allergy testing, and he drinks plant-based milks instead. Over the years, he has tried a variety of brands and types of substitute milks, but his favorite is coconut milk because of its appealing taste and texture. For the past few years, he has been drinking So Delicious brand vanilla coconut milk beverage, and he also really likes their vanilla dairy-free yogurt and Coco Whip whipped topping. After being on a dairy-free diet for nearly twenty years, Alex doesn’t mind forgoing milk because he has tasty milk substitutes to enjoy daily.

After recently reading an article about the benefits of coconut water, I was curious if coconut milk shared those same healthy attributes. According to research, coconut milk offers great health benefits. In “Coconut Milk Health Benefits and Uses,” published online at the Healthline.com website on December 11, 2018, registered dietician Franziska Spritzler outlines what makes coconut milk a healthy choice. [To read this article, please click here.]

First, she explains that medium-chain fatty acids found in coconut milk prove beneficial. Research indicates that these fatty acids are less likely to be stored in the body as fat, may help curb the appetite, can increase metabolism, and might help the body lose belly fat. However, she cautions that the lower levels of medium-chain fatty acids found in coconut milk may not dramatically increase weight loss.

In addition, she cites studies that demonstrated the lauric acid found in coconut milk can lower bad LDL cholesterol and triglycerides and can raise good HDL cholesterol. Along with potential for improving cardiac health, lauric acid can improve overall health by fighting viral and bacterial infections. For this reason, every day Alex takes the supplement Monolaurin, which contains a form of lauric acid. Some research suggests that Monolaurin also acts as a natural antifungal, eradicating yeast infections.

Moreover, she references research indicating the ability of coconut milk to reduce inflammation in the body and to decrease the size of stomach ulcers as effectively as prescription medication. Although she touts the potential value of coconut milk, Ms. Spritzler indicates that not all studies are conclusive regarding its benefits. Furthermore, she cautions that regular coconut milk is quite high in calories and fat: one cup contains 552 calories and 57 grams of fat. In contrast, the So Delicious coconut milk beverage, which also contains filtered water, has 80 calories and 4.5 grams of fat in one cup. Since the calories and fat levels differ between pure coconut milk and coconut milk beverage, one wonders if the effectiveness of the health benefits may differ, as well.

In another online article, “Coconut Milk Nutrition: Beneficial Vegan Milk or High-Fat Trap,” published on the Dr. Axe.com website on December 26, 2018, Jillian Levy describes even more potential health benefits of drinking coconut milk. [To read this article, please click here.] In addition to citing the same research noted in the previous article regarding potential cholesterol-lowering improvements, Ms. Levy touts the benefits of the minerals found in coconut milk. These minerals, especially magnesium, also help cardiovascular health by lowering blood pressure. In addition, she notes that these minerals provide electrolytes the body needs for optimum health.

Along with minerals, the medium chain fatty acids, or MCTs, found in coconut milk offer various health benefits, she explains. Specifically, they help the brain function properly. Furthermore, as noted in the previous article, these fatty acids can help in losing fat because they help the body use energy. Referencing research from the School of Dietetics and Human Nutrition at McGill University, the author quotes from the published study: “MCTs may be considered as agents that aid in the prevention of obesity or potentially stimulate weight loss.” She goes on to explain that MCTs provide people with a sense of being full which makes them less likely to overeat, perhaps making dieting easier.

As in the previous article, Ms. Levy cites the same research indicating the potential for coconut milk to reduce the size of ulcers and describes its protective effect upon the mucus lining of the stomach. Moreover, she notes that coconut milk can help the digestive system, hydrating and nourishing the digestive tract without causing irritation that regular milk may inflict.

Noting the benefits of coconut milk upon inflammation also described in the previous article, Ms. Levy explains that the MCTs found in coconut milk can help joint inflammation and arthritis. Specifically, she states that the medium-chain fatty acids help lower inflammation associated with pain in the muscles and joints as well as inflammation associated with autoimmune disorders.

In addition, this article describes two potential benefits of coconut milk noted in blood tests. To illustrate, she explains that coconut milk can help prevent anemia because plant-based milks provide the iron needed to treat iron-deficiency anemia. Moreover, coconut milk can prove helpful in treating diabetes by managing blood sugar effectively. The fat content in coconut milk apparently helps slow the rate sugar is released into the bloodstream, regulating insulin levels. After clearly explaining all the potential health benefits of coconut milk, the author recommends drinking full-fat coconut milk for optimum results but advises drinking this type in moderation because of the higher caloric content.

Although some may wonder if people with autism on the gluten-free and dairy-free diet can fulfill their nutritional needs on this restricted diet, research suggests that coconut milk offers several potential health benefits. After reading more about coconut milk and how it can improve cardiovascular and digestive health as well as alleviate inflammation, I am delighted that Alex consumes coconut milk products on a daily basis. I have always thought that he is quite intuitive about knowing what his body needs to be healthy, and now I’m confident that his choice of coconut milk is one that will continue to heal his body so that he can enjoy life to the fullest.


“You gave the people of Israel this land that You had promised their ancestors long before­––a land flowing with milk and honey.” Jeremiah 32:22

Sunday, January 6, 2019

New Tips for a New Year

When I find things that are helpful, I like to share this information with others, hoping that they, like me, can benefit. Whether these tips are good recipes, clever ways to do tasks, or useful gadgets, I’m always on the lookout for ways to make life easier and better. As the new year begins, I would like to share three good tips I’ve recently discovered that may be of use to others, as well.

First, I’ve adapted a recipe for a dessert that has become Alex’s favorite. Because he is on a gluten-free and dairy-free diet, typically I have to make desserts from scratch for him. Also, his current preference for foods that are cool and smooth means that I must consider the texture of the dessert carefully. When he requested some type of pumpkin dessert for Thanksgiving, I started looking online for recipes that might satisfy his restrictive dietary and sensory concerns. After some searching and making a few changes, I hit upon a light and fluffy dessert on the Taste of Home website Alex absolutely loves, rewarding my efforts.

To make pumpkin pudding whip, add ¾ cup of non-dairy milk (I use So Delicious vanilla coconut milk.) to a 3.4 oz. package of Jello instant vanilla pudding and use an electric mixer to combine for one minute on medium speed. Next, add one half of a 15 oz. can of pure pumpkin and ½ teaspoon McCormick pumpkin pie spice and mix together. Then add one half of a 9 oz. container of frozen nondairy whipped topping that has thawed in the refrigerator (I use So Delicious dairy-free Coco Whip coconut whipped topping.) and combine with the other ingredients and refrigerate. This recipe can easily be doubled, too. If dairy is not a dietary issue, use 1½ cups regular milk and 1½ cups of Cool Whip topping instead. (Nondairy milk is more watery, so less is required to make the proper texture.) I appreciate how quick and easy this dessert is to make, and the taste and texture are perfect for Alex, who has eaten pumpkin pudding whip every evening for dessert since Thanksgiving.

Another tip I’d like to share is how to address cards to families who have adult children with autism living at home with them. (For that matter, this would be true if the adult children living at home did not have autism.) When we received Christmas cards this year, I was a bit surprised and a little hurt when some cards were addressed only to Ed and me, even though I feel certain that the senders knew Alex still lives at home with us. If someone were not sure whether an adult child were still living in the family home, cards could be simply addressed to the last name (e.g. "The Byrnes") or to the family (e.g. "The Byrne Family"). This would be appropriate even if adult children were no longer living at home.

Two relatives came up with quite clever ways to include Alex in a special way. My cousin sent Alex his own Christmas card separately, which made him feel especially grown-up. In addition, knowing that he is interested in weather, she added a note about the current temperature in her town. We liked the special touch she gave in acknowledging Alex and remembering his fondness for numbers and meteorology. Our nephew’s wife was also very clever in addressing our family Christmas card to “Alex Byrne and Family.” By making him the center of the family, which he is, he felt quite special to have the card specifically addressed to him. Again, we appreciated such thoughtfulness in remembering him at Christmastime.

Finally, I recently found a useful gadget that could prove very helpful in an emergency situation. Since Alex and I enjoy watching television shows about fire stations and hospitals, I began thinking about what might happen if we were ever in an automobile accident. I remembered seeing a label that could be attached to the seat belt as a way of identifying the passenger as having autism. This way, first responders would know why the passenger may be behaving in an untypical way. A Google search took me to the spot where I had seen these seat belt labels, the National Autism Association's Little Shop of Hope. [To access this online store, please click here.]

Known as a Help Belt-Safety Alert Seat Belt Cover, this bright red fabric label wraps around any seatbelt and snaps in the back. On the front is written the following information: “PERSON WITH AUTISM/May Not Respond to Verbal Commands/Open for Info.” Inside the label is a plastic pouch containing a pre-printed form that can be filled out to detail information regarding the person’s name, address, phone number, emergency contact information, and medical information, such as medications. This would be extremely helpful in an emergency situation to have this information readily available.

In addition, these useful safety devices are quite reasonably priced at $8.00 each plus $1.50 for shipping and handling. For less than twenty dollars, I ordered one for each of our cars and was pleased that they arrived in less than a week. After filling out the information sheets and placing them in the secure plastic pouches, I attached one to the front passenger seat of my car and the other to the back seat of Ed’s car, where Alex rides. If Alex were going someplace with my parents or his caregiver, we could easily detach the label from one of our cars and temporarily transfer it to another car. While I hope no one ever needs to use this safety alert device, I feel better knowing that this information is handy in the event of an emergency.

Although desserts and addressing cards and seat belt labels may seem trivial on the surface, discovering potential ways to make Alex’s life better always makes my life better, too. Perhaps passing along the things we’ve learned through our journey with autism may improve other families' lives, as well. The teacher in me certainly hopes so.


“Teach me to do Your will, for You are my God. May Your gracious spirit lead me forward on a firm footing.” Psalm 143:10