Sunday, April 24, 2016

The Possible Dream

A few days ago, my friend and colleague Debbie posted on her Facebook page that when she taught the vocabulary word quest this week, she suddenly burst into singing “The Impossible Dream,” in which quest is a key part of the lyrics. Unfamiliar with the musical Man of La Mancha, her students had never heard that inspirational song. As she noted, we are too busy preparing students for standardized tests that we often miss out on teaching them “glorious knowledge,” which makes her sad. However, she believed this lesson was too valuable to miss and showed a You Tube video of the song, which impressed her students. In fact, I’ll bet that when they look back on her class, “The Impossible Dream” will stand out in their memories much more than any state-imposed standards.

When I was learning to play piano in the 1970’s, many of the songs I learned came from musicals. After seeing The Sting, I wanted to learn to play “The Entertainer,” and I also learned to play one of my favorite songs at the time, “Day By Day” from Godspell. I suspect I drove my family crazy as I repeatedly played on the piano “If I Were a Rich Man” and “Fiddler on the Roof” from the popular musical of the same name. As I recall, my mom would instead request that I played “A Time for Us” from Romeo and Juliet, which she found more harmonious. In addition, I learned how to play “The Impossible Dream” and tried to master the dramatic flourish I felt it deserved. Kids today don’t know what they’re missing by not being familiar with those great songs.

Yesterday, I found myself humming “The Impossible Dream” throughout the day and even looked up the lyrics to make sure I remembered them correctly. As I read these words after many years of not thinking about them, I realized that they spoke to my life as an autism mom, always striving and seeking to help Alex overcome obstacles.

“To dream the impossible dream
 To fight the unbeatable foe
To bear with unbearable sorrow
To run where the brave dare not go…

To fight for the right
Without question or pause
To be willing to march into Hell
For a heavenly cause

And I know if I’ll only be true
To this glorious quest
That my heart will lie peaceful and calm
When I’m laid to my rest…”
“The Impossible Dream” lyrics by Joe Darion

On the days that dealing with autism no longer feels like a “glorious quest” and feels more like an exercise in frustration, I have to dig deep in my faith to remember how important making Alex better truly is. Fortunately, Alex, who has the childlike faith Jesus describes, reminds me to be patient and to never give up. The other night I asked his opinion about an event that might happen in the future, and he looked directly at me and simply said, “W.A.S.” Clueless as to what that answer meant, I asked him about his response. He explained, “W.A.S.—wait and see.” Of course, this is one of Alex’s standard responses to many questions; he has enough faith to wait for outcomes and trusts that everything will be fine in the end.

Last night, he was watching a Chicago Cubs baseball game on television with Ed; he has become a big Cubs fan and is delighted that they have a great team this year. However, in the sixth inning, the opposing team scored seven runs, putting the Cubs behind with a score of 9-3. Ed, who tends to be more pragmatic than optimistic, basically wrote off the game then and there. Alex, on the other hand, was not ready to throw in the towel, knowing that there were more innings to play. Using his standard “Wait and see” line, Alex never gave up hope until the last inning, even though the Cubs eventually lost 13-5. As Ed noted, Alex is the true Cubs fan since Cubs fans have always been known to dismiss losing seasons by saying, “Wait ‘til next year.” Hopefully, Alex’s optimism will be rewarded with a winning team this season so that he doesn’t have to wait too long.

After the baseball game, Ed supervised Alex’s bedtime routine instead of me because I have a cold and wasn’t feeling well. After listening to Alex’s bedtime prayers, Ed commented that Alex is so earnest in his prayers, making sure that he doesn’t forget to name anyone in the list of people he wants God to bless. I have to believe that God appreciates Alex’s pure love for others, his trusting faith, and his unending hope. As I keep working toward this seemingly impossible dream of complete healing for Alex, I know that with God all things are possible. I have to believe that He hears the earnest prayers of my beloved son and whispers in his ear, “Wait and see.”

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

Sunday, April 17, 2016

Holding On

After more than two dozen years of being Alex’s mom, I have learned to take most things in stride that autism has thrown at us and to see most days optimistically. However, to be honest, the day-to-day demands of caring for a child––even though he is by age an adult––with autism can sometimes overwhelm me and push me to my limits of patience. On those thankfully rare days, I allow myself to indulge in a brief pity party and then move forward, knowing that I have plenty of ways to spend my time more productively.

As I mentioned in a recent blog post, Alex has been dealing with increased anxiety lately, which means that I have also been dealing with anxiety––his and mine. While he can freely express his anxiety through trembling, trying to avoid situations that trigger nervousness, and communicating his upset by grabbing my hands as a means of getting my attention and seeking comfort, I must keep my worries about him hidden from him, knowing that my fears will escalate his. He needs for me to be calm.

Trying to figure out the source of his fears, I have mentally reviewed potential causes both physical and emotional, wracked my brain for any changes that could cause him to be anxious, and searched for possible solutions to help him feel calm and secure. In addition, I have discussed my concerns with Ed, who assures me that he trusts my judgment completely; Alex’s team of therapists, who concur with my suspicions and methods; and my mom, who sympathizes with me and eases my confusion on a daily basis. Through all of my mental sorting through my observations, research, and mother’s intuition, I have prayed for guidance and wisdom, for God to show me what I need to do to help Alex and to help me remain calm and patient as I waited for answers.

Is it yeast overgrowth in his digestive tract? Is it allergies? Is it the change to Daylight Savings Time that has disturbed his sleep cycles? Is it the wacky spring weather we’re having? Do his medications need tweaking? Is there some therapy or intervention we’re not doing that we should be?

Is he unhappy with his therapists because they know his potential and are pushing him toward attainable goals? Is he bored with the current routine? Is he trying to show independence by balking at what we tell him to do?

Is he really that upset about not being able to drive, as he lets me know when he is grounded as a consequence for poor choices? Is he picking up on my stress from trying to balance my job as a teacher and my primary role as his mom/caretaker/advocate? Is he sad that American Idol is over? Is April really, as poet T.S. Eliot wrote, “the cruellest month”?

Is he going through a healing process that is uncomfortable, the way growing pains plague children or an injury itches as it’s getting better? Is he getting better or worse? Is his mother overthinking and overanalyzing a situation that is only temporary?

A couple of weeks ago, Alex let me know that he was anxious because I refused to honor his request to cancel a therapy session. After he grabbed my hands, glared at me, and refused to talk, I found myself in one of my rare low times. Just as Alex grasps my hands in desperation, a way to let me know that he’s unhappy and can’t find the words, I needed to grab onto my mom. Telephoning her and letting pent up tears flow freely, I explained, “I’m okay; I’m just so tired and frustrated.” As she cried with me, her anxious child, she also comforted and reassured me, giving me the strength I needed to move forward. Just as I know that my mom can always comfort me, Alex relies upon me to comfort him. He knows that even when he can’t express the reason for his upset, I always understand his feelings of anxiety and will do everything in my power to help and reassure him.

Last weekend, as we were driving home after a nice dinner at a restaurant, the rain gave way to sunshine, and a beautiful rainbow appeared above the farm fields we were passing. As we gazed at the intense colors, I reminded Alex of the rainbow’s significance, telling him, “Rainbows remind us that God always keeps His promises.” Alex smiled and seemed to take this symbolic appearance to heart.

Other than a few occasional anxious moments, Alex is thankfully doing better this week. In fact, he shows signs of progress, not just in dealing with his anxiety, but also in his willingness to do things that would venture outside his typical comfort zone. For example, on Wednesday, when his peer companion had to cancel their session suddenly due to illness, Alex eagerly accepted a spontaneous change of schedule with an offer to visit my parents and thoroughly enjoyed his time at their house. In addition, he has been excited about being able to go outside, something he sometimes avoids, probably due to sensory overstimulation, and has enjoyed kicking a football in our backyard. Yesterday, we took him to a university women’s softball game, something he had been looking forward to for weeks, and he had a great time.

Along with the easing of his anxiety, Alex has also shown promising signs of progress. For example, we have noticed that he has been speaking more clearly at a more audible volume and in longer and more complete sentences. Essentially, he seems to be having a language breakthrough right now. Also, his eye contact has been especially good this week. He often comes running to tell us something that he has seen on television or read online or in a book, eagerly and clearly relating something he has discovered, all the while looking directly at us. Perhaps my theory of the itching before the healing wasn’t too far off, after all.

This recent return of anxiety has reminded us that Alex’s progress is not linear; he must go through ups and downs to get to where he needs to be. When those trying times ease, we are thankful and look for the blessings that inevitably follow. In the meantime, we continue to pray for his complete healing, and until that blessed event happens, we hold his hands literally and figuratively, reminding him that we will never allow him to fall and that God always keeps his promises.

“Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep His promise.” Hebrews 10:23

Sunday, April 10, 2016

Dealing with the Unpredictable: Anxiety and Autism

Yesterday I ran across an interesting article explaining connections between autism, anxiety, and sensory sensitivity. This week, Ann Griswold’s article “Uncertainty drives anxiety, sensory issues in autism,” in Spectrum (April 8, 2016) highlights recent research on this topic. [To read this article, please click here.] According to new research, fear of the unknown triggers anxiety and sensory sensitivity issues often found in autism. Moreover, children with autism have difficulty predicting what will happen in situations, causing them to become easily overwhelmed.

Studies have shown that up to 84 percent of children with autism have high levels of anxiety, and up to 70 percent have some form of sensory sensitivity. Research suggests that overreacting to sensory stimuli causes anxiety for people with autism. Under the direction of Elizabeth Pelliano, professor of psychology and human development at the University of London, researchers studied the relationship between anxiety, sensory issues, and difficulty in predicting future events found in children with autism. Their findings were recently published in the Journal of Autism and Developmental Disorders.

As Dr. Pelliano notes, “Autistic children want to have control over their environment, to make it more predictable.” Consequently, researchers suggest that teaching children with autism to use past experiences in order to predict future outcomes may help ease their anxiety and their sensory issues. In studying children with autism, researchers noted interaction between the three factors––anxiety, sensory sensitivity, and impaired prediction skills––but were uncertain which was the initial trigger.

For example, uncertainty about what might happen could cause anxiety that would make sensory overstimulation, such as loud noises, seem more threatening. On the other hand, uncertainty could cause the senses to be hyperaware in an attempt to protect oneself, leading to greater anxiety. In a third proposed scenario, sensory sensitivity could create uncertainty about an unpredictable environment, causing anxiety. Essentially, researchers are still determining which factor triggers the other two. Nonetheless, by improving prediction skills, perhaps sensory issues and anxiety can be eased in children with autism, giving them a greater sense of control.

Additional research cited in this article refers to predictive impairment in autism noted by Pawan Sinha, professor of vision and computational neuroscience at the Massachusetts Institute of Technology. On February 3, 2015, Spectrum published an article by Dr. Sinha and his associates entitled “Autism as a disorder of prediction in a ‘magical’ world” in which he discussed how children with autism often become overwhelmed in an unpredictable world. [To read this article, please click here.]

Describing this “magical world” theory of autism, Dr. Sinha explains that magic relies upon the element of surprise and unexpected outcomes. However, for children with autism, they are often unpleasantly surprised because they have trouble predicting what will happen, overlooking important clues that could help them prepare for the outcomes. Thus, the world seems chaotic to people with autism. He also suggests that repetitive behaviors frequently seen in autism are compensatory behaviors, a way to try to take control when they feel out of control. Although the usual intervention for children with sensory issues is to minimize their exposure to those stimuli that upset them (such as wearing headphones to minimize noise or sunglasses to ease light sensitivity), he recommends emphasizing the predictability of sensory triggers so that children can be prepared and not taken by surprise.

Both of these research studies hold particular interest for me because Alex deals not only with autism but also with anxiety and sensory issues. Although he has learned to cope with his sensitivities to light, sound, and touch through auditory integration therapy and sensory integration therapy, he suffers from extreme anxiety that is treated by ongoing cognitive therapy and medication.

April always seems to be a difficult month for him, as his anxiety most often arises at this time of the year. Over the years, we have tried to determine a cause so that we could better help him deal with his anxiety. We have pondered over the effects of the time change to Daylight Savings Time, barometric changes and increased pollen counts brought by typical rainy and windy spring weather, or just dealing with cabin fever from being cooped up in the winter time. In the past several days, I have found myself dealing with migraines triggered by air pressure and spring allergies, so I suspect physical triggers are likely behind Alex’s increased anxiety.

However, we have also tried to ascertain any emotional issues that have made him more anxious. This month, we have noted his reactions of involuntary shaking, grabbing my hands for reassurance, and a newly acquired hypochondria in which he tells us we need to cancel his appointments with his therapists because he suddenly has developed assorted symptoms that miraculously disappear as quickly as they appear. In other words, Alex seems perfectly fine physically and emotionally until it’s time for his appointments with his therapists, and then he panics for some unknown reason.

Fortunately, they all understand his anxiety issues and have been supportive and reassuring in trying to help him overcome these panic attacks. His music therapist even agreed to do Alex’s therapy sessions here at home instead of having us come to his office while Alex is in this anxious phase. His behavioral therapist has decided to shift her focus from social skills to dealing with anxiety in hopes of helping Alex strengthen his coping skills so that he can take control when he feels out of control. We know how blessed we are to have professionals who are not only helping us deal with Alex’s anxiety but who also genuinely care about him and want to help him.

While we would like to take away all the sensory stimuli and unpredictable situations in life that upset Alex, we know that would be impossible. Instead, we, along with his therapists, try to help him cope with his anxiety by teaching him how to take control of his emotions, especially when he feels out of control in situations that overwhelm him and take him by surprise. Along with developing his coping skills, we understand his need for schedules and routines, and we do our best to prepare him for potential outcomes. In a world that often seems unpredictable, we want him to know that he can always count on us. More importantly, we have taught him to develop a personal faith so that he knows he can always rely upon God in the midst of any storm. While we don’t know what the future holds, we know who holds our future—the One who can give Alex peace until healing takes away autism and the accompanying anxiety.

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” Philippians 4:6

Sunday, April 3, 2016

Autism by Numbers: The Latest CDC Report

“People say believe half of what you see, Son, and none of what you hear, but I can’t help but be confused. If it’s true, please tell me, Dear.” ––Marvin Gaye, “I Heard It Through the Grapevine”

Just in time for April first and the beginning of Autism Awareness Month, the U.S. Centers for Disease Control and Prevention (CDC) released a new report this week regarding the prevalence of autism. [To read this report, please click here. To read a summary of this research, please click here.] This report, which has been updated every two years since 2000, has indicated a startling increase in the rate of autism from 1 in 150 children in 2000 to 1 in 68 children in 2010. However, their newest data from 2012 indicates that the rate has stayed relatively stable, and they cite the current rate of autism as 1 in 68.

Of course, the media has run with this statistic, proclaiming that autism rates have reached a plateau and are no longer increasing. With headlines such as, “Latest CDC Figures Show Autism Rates Holding Steady,” “US Autism Rate Unchanged at 1 in 68 Kids: CDC,” and “Autism rate among US children held steady 2010-2012: CDC,” one would think that something miraculous has occurred to stop the rising tide of autism. However, we need not be jumping for joy or jumping to any conclusions just yet.

First, one must consider the samples used for the study. This ongoing research only includes eight-year-old children. The newest report released a few days ago is four years old, with the “surveillance year” being 2012, and only considers children born in the year 2004. Consequently, no children who are currently under the age of twelve have been included in this data.

In addition, this data was only collected from eleven select sites around the country, the so-called CDC Autism and Developmental Disabilities Monitoring (ADDM) Network. These children lived in select communities in eleven states: Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin in 2012. Do these communities accurately represent trends in autism throughout the United States? Including specific communities in only eleven states seems to be a rather small sampling for a rather important issue.

Even the researchers admit potential problems with the data, noting, “The findings in this report are subject to at least seven limitations.” Among these cited limitations are problems with “source records” used to identify children with autism, such as health care records and education records. These records provided the only data, and the amount and quality of data varied, especially from state to state. For example, some states did not provide educational data, which “might have led to an underestimate of ASD [autism spectrum disorder] prevalence in those sites.” Moreover, education records were usually not available for children who were enrolled in private schools or who were home schooled. If the data were limited, perhaps the conclusions of the study lack reliability.

Other limitations of the study, the researchers admit, include the lack of population data available during non-census years, which necessitated estimating population figures. However, the most startling admission the researchers make lies in the selection of the ADDM Network sites. As the fourth limitation listed, they state, “the surveillance areas were selected through a competitive process and were not selected to be representative of children aged 8 years in the United States or the state where the surveillance site was located.” If these ADDM sites are not representative, what is the point of doing the survey at all? Clearly, these methods seem to lack the needed controls for research accuracy and take away reliability from the study.

Undaunted by questions in the methodology of this study, the CDC has released “Five Important Facts to Know” regarding the “statistics” released this week. [To read this document, please click here.] Essentially, they state that children are not being diagnosed with autism early enough, minority children with autism are not being diagnosed early enough, and schools are important in evaluating children with autism and providing services for them. This poses a problem, however, since children typically start school at age five, meaning that many preschoolers with autism are not getting the valuable early intervention they need. Perhaps pediatricians and primary care physicians need to do a better job at helping parents whose infants and toddlers present symptoms of autism.

In addition, the CDC notes that the percentage of children with autism remains high and states that the new report “shows no change between 2010 and 2012 in the percentage of children identified with ASD.” However, they also note, “It is too soon to tell if the percentage of children identified with ASD is still increasing or has stabilized.” They provide two reasons why people should not jump to any conclusions about autism rates. Specifically, they note that although the average percentage in the eleven sites combined remained the same, two communities reported significant increases in the percentage of children with ASD between 2010 and 2012. Also, they state that the percentage of children identified with ASD varied “widely by community” with the lowest percentage in parts of South Carolina and the highest in parts of New Jersey. Again, one wonders how reliable the data is when the sampling areas were admittedly “not selected to be representative.”

After reading through the CDC research and reports, I found myself totally frustrated, wondering how much time and money has been wasted on worthless studies of autism. As an autism mom for more than two dozen years, I would like to share my own “Five Important Facts to Know” about autism.

1. The CDC has no idea how many kids actually have autism because their research methods lack reliability.

2. The CDC recommends early diagnosis of autism and early intervention but doesn’t understand the difficulty of getting services once those kids have an autism diagnosis. Parents know that when services are available, they are costly. Often, providers have long waiting lists, and children can’t immediately get the help they need.

3. The CDC has no clue (or will not admit) what the actual cause of autism is, nor do they know (or will they admit) what has caused the significant rise in the percentage of children diagnosed with autism.

4. The CDC doesn’t seem to be working on finding out what really causes autism, a medical condition they should be investigating. Our society cannot provide the services and resources needed for all those who have autism as well as those who will be diagnosed with autism in the future.

5. Instead of the CDC, autism parents, whose deep love for their children and tremendous tenacity motivates them to keep looking for the answers, will solve the autism puzzle. Count on it. Now, all we do is wait on the Lord to answer our prayers.

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