Waiting for a Change

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

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

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

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

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

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

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

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

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

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

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

Autism and OCD

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

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

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

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

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

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

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

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

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

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

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

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