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

Sunday, March 27, 2016

Out of Darkness Comes the Light

 
This past week, I have been on spring break from teaching, yet the rest of our family’s schedule has basically remained the same. Ed, who was on spring break from teaching at the university earlier in the month, had to go to work in the afternoons, and Alex’s schedule of afternoon therapies continued as usual. Trying not to interfere with the morning routine Ed and Alex have established, I stayed out of their way. Despite my best attempts not to rock Alex’s boat, he seemed to find my morning presence annoying, acting irritable and even feisty with me at the time when I would normally be coming home from school. As I tried to help him get ready for his various afternoon appointments, he did not want to cooperate and preferred trying to argue with me instead.

One morning I walked away from him and found him waiting outside the bathroom door for me, ready to continue a disagreement I thought I had already settled. Usually, Alex is eager to see his support team members so that he gives me no trouble when I remind him that he needs to brush his teeth and comb his hair, but this week he wanted to balk at everything I told him to do. To let me know his displeasure, he would play the passive-aggressive game of simply staring at me when I told him to do something or grabbing my hands to get my attention. Using all the tools his therapists have given us, I would calmly redirect him with the reminders of “making good choices” and “respecting personal space.” When that didn’t seem to move him physically or emotionally, I resorted to my no-nonsense middle school teacher voice and informed him that he would be grounded for the day if he didn’t follow my directions.

Of course, in my analytic mind I’ve also been trying to figure out why Alex decided to challenge me when he is normally docile and compliant. Could this be a developmental phase he needs to go through? Was he unhappy that his typical schedule was changed because I was home instead of at work? Were there environmental changes, such as air pressure, the full moon, or allergies, bothering my human barometer son? Was he not feeling well, perhaps irritated by the discomfort of thrush in his mouth again? After trying to ask him questions when he was not moody, I could get no definitive answers for why he was giving me a hard time, other than because “Mommy is shorter than Alex.” Since that isn’t going to change, I decided to look in his mouth and found the telltale signs of yeast overgrowth, called his doctor for a prescription of antifungal medication, and gave him Diflucan. Soon, he showed signs of healing and thankfully became more pleasant with me.

I have been told that people with Alzheimer’s disease and children with autism show hostility to the person who loves them the most because they know that person will forgive them, no matter what. Alex knows that he can always say he is sorry for his behavior, and I will always readily accept his apology and never hold a grudge. He knows that my love for him is unconditional. He also knows that about his dad, but apparently, I get the “favored” treatment because “Mommy is shorter than Alex.” Nonetheless, he and I share an unbreakable bond that allows us to enjoy each other’s company the vast majority of the time and to work out our differences. I truly believe that Alex knows that I always have his best interests at heart, even when he’s not happy with me for pushing him to be his best. He also knows that I will cheer him on every step of the way, and I will do everything in my power to protect him from harm.

Last weekend, Alex and I enjoyed watching a television presentation of The Passion, a modern-day interpretation of the last week of Jesus’ life. As we watched the events leading up to the crucifixion and the resurrection, Alex enjoyed the music the most, swaying and trying to sing along to the contemporary songs used to tell the story. However, I found myself drawn to the portrayal of Mary, Jesus’ mother. Being raised in the Protestant Church, I viewed the importance of Mary only at Christmastime as the young woman who gave birth to the Messiah. However, The Passion made me think about her role as the mother of an adult son facing tremendous suffering, and I wondered how she found the strength to watch her son suffer in pain and die, even knowing that he would be resurrected. According to the Gospels, she was there when Jesus was crucified. Only in the Gospel of John do we see Jesus acknowledge her as he is dying: “When Jesus saw his mother standing there beside the disciple he loved, he said to her, ‘Dear woman, here is your son.’ And he said to this disciple, “Here is your mother.’ And from then on this disciple took her into his home.” (John 19:26-27)  Before he died, Jesus wanted to make sure his beloved mother, who was there to support him to the end, would be all right. The tenderness of that moment moves me deeply.

On Thursday, after helping Alex through some unexplained anxiety, I took him to music therapy, where his therapist was able to further reassure and calm him. As I waited during their session, I could hear the soothing words of the familiar Beatles’ song, “Let It Be”: “When I find myself in times of trouble, Mother Mary comes to me, speaking words of wisdom, let it be. And in my hour of darkness, she is standing right in front of me, speaking words of wisdom, let it be.” In those lyrics that Alex and his therapist only occasionally include in their therapy time, I also found comfort. “And when the night is cloudy, there is still a light that shines on me, shine on until tomorrow, let it be.”  Despite the occasional setbacks––the cloudy nights––the light of hope pushes me forward to help make Alex better. Sometimes all I need to do is wait––to let it be––until the time is right.

As we celebrate Easter today, I’m reminded of the hope we find in the resurrection. Before his crucifixion, Jesus prepared his disciplines for what was to come, saying, “Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.” (John 16:22)  From the grief of Good Friday, Jesus fulfilled that promise to return, bringing the joy of Easter Sunday through the resurrection and giving us eternal life through his sacrifice. Although I don’t know what the earthly future holds for Alex, I am certain who holds his eternal future, and I can be sure that He, who gave His only son, has unconditional and perfect love for my son, which gives me peace.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

Sunday, March 20, 2016

Autism and Health: A Challenge

 
This month, a comprehensive analysis was published highlighting the problems parents have finding help for their children with autism. Jane Willis and Yara Evans from Queen Mary University of London released the findings of their surveys from two years ago in a thirty-page report entitled “Health and service provision for people with Autism Spectrum Disorder: A survey of parents in the United Kingdom, 2014.”  To read this full report, please click here.] At the time they surveyed 264 parents and caregivers about their experiences of caring for children with autism, more than 600,000 people with autism were living in the United Kingdom. As I read the report, I noted that parents in the United Kingdom face the same issues that autism parents encounter in the United States.

Under the topic “Challenges faced and severity of issues,” more than 80% of the parents listed five specific challenges out of a list of 22, and the majority described all of these issues as “very significant.” These concerns included the following:

1.  anxiety/fearfulness/avoidance behaviors

2.  irritability (low mood, oppositional behaviors, tantrums, lack of flexibility)

3.  sensory sensitivity (light/sound/touch/abnormal pain sensitivity)

4.  agitation/stimming behaviors

5.  sudden negative changes in behavior

Although behaviors appear to be the primary challenges parents face, the survey indicates that 87% of parents sought treatment from health care professionals for various issues and often found little or no help. The surveys revealed that parents consulted doctors for help with dietary and nutritional issues, gut issues, behavioral issues, sleep problems, toileting issues, seizures, and other issues without getting satisfactory assistance. Parents noted that many doctors lack knowledge about autism, and some did not take their concerns seriously, dismissing them as “just autism.”

With little support from medical professionals, parents of children with autism often seek other interventions, trying to help their children. This survey found that ninety percent of the parents had used dietary interventions or modifications for their children with autism. The top two diets used were the gluten-free diet (94% of those who used dietary modification) and the casein-free diet (90% of the parents who implemented dietary changes). Some parents use a combination of dietary modifications; we have used the gluten-free and casein-free diet with Alex for seventeen years. Of those parents who used dietary interventions, 92% reported some level of improvement (life-changing, significant, or slight) in their children with autism. Some of the benefits of dietary intervention that parents noted were improved communication skills, better eye contact and sociability, calmer and more compliant behaviors, improved sleep, greater focus, and fewer allergy and digestive issues.

In addition to dietary changes, 90% of the parents in this survey indicated that they had used nutritional supplements with their children. The four types of supplements most used included fish oils/essential fatty acids, vitamins, digestive and gut support, and minerals. Of the parents who used nutritional supports, 87% noted improvement at some level. These benefits are similar to those of the dietary interventions, such as better behavior, including being calmer and more focused, improved eye contact, and fewer digestive issues. Interestingly, parents who used nutritional supplements reported using more than one; in fact, nearly half used 6-10 supplements. Several of them also mentioned using dietary intervention along with nutritional supplements and felt that both had helped their children.

Besides dietary and nutritional interventions, parents also relied upon traditional medicine with 62% of parents reporting their children had been given prescription medications. The top three types of prescriptions listed are antibiotics, anti-fungals, and anti-virals. Considering that children with autism often have immune system issues, these medications would be necessary to help them deal with various types of infections. Parents generally found these prescriptions to be helpful, as 72% reported some level of improvement in their children after taking the medicine.

Despite the success of these medications, many parents of children with autism also seek alternative therapies to help their children: 72% of those surveyed indicated that they had tried alternative methods, and 87% of those parents reported some level of improvement. From a list of 33 different alternative therapies (several of which we have tried with Alex at one time or another), the top alternative therapies used included the following: homeopathy, ABA (Applied Behavior Analysis), HBOT (hyperbaric oxygen therapy), and CST (Cranial-Sacral Therapy). Those parents who used alternative therapies cited benefits, such as improvement in sensory issues and reduced anxiety.

Finally, the survey asked parents what changes they would like to see to assist them in helping their children with autism. Their top five recommendations for changes needed include the following:

1.  Improved relationships between parents and professionals

2.  An end to discrimination (treating children with autism differently than typical children and recognizing their medical needs) in service provision

3.  A better understanding of autism

4.  Better education and training for professional staff

5. More thorough investigations of the problems involved (such as recognizing that behaviors may have a medical cause)

After reading this comprehensive and insightful report, I was impressed with the information the researchers and the parents shared. Clearly, parents are not getting the support they need from the majority of medical professionals, who lack knowledge of autism and who may see it only as a psychological issue instead of a medical condition that can be treated to improve behaviors. With the increasing rate of autism, medical professionals need training to understand various issues concerning autism so that they may treat their patients appropriately. In the meantime, parents must educate themselves in alternative methods and therapies so that they can help their children get better. Our children deserve no less.

“An unreliable messenger stumbles into trouble, but a reliable messenger brings healing.” Proverbs 13:17

Sunday, March 13, 2016

Chatting with Alex

 
When Alex was little and had very limited language, we prayed for the day when we could carry on a conversation with him, and we worked hard on his speech skills, hoping to make that goal a reality. The other day, his behavioral therapist commented that she has noticed significant improvement in Alex’s speech and specifically mentioned that his sentences have become much longer as these skills have developed. What is also notable is that he wants to interact with us and tell us what he has thought or observed; often he wants to tell us something he finds interesting. Sometimes, he’ll come running up or down the stairs to find us and eagerly share something that’s on his mind.

Since speech still does not come easily for Alex, he often relies upon familiar favorite topics, especially those related to numbers, such as dates, ages, prices, and statistics. He also likes the predictable, so our conversations often resemble a scripted comedy routine, much like the “Who’s on First” bit by Abbott and Costello. While I suspect that my role is the straight man, Alex, the funny guy, seems to find our banter quite amusing and usually walks away afterward smiling and chuckling. Even though we might have essentially done the same script one hundred times or more, creating a sense of déjà vu, he still finds the conversation funny every time.

Usually the catalyst for our chats lies in the appearance of a number that has significance to Alex. For example, when the thermometer registers sixty-three degrees, Alex lights up and engages me in a routine discussion about the heights of his female relatives.

Alex: “Sixty-three! That’s like Mommy’s, Aunt Tammy’s, Aunt Babs’, and Aunt Pat’s height in inches!”

Me: “That’s true!”

Alex: “Is Nanny 5’1 ½” or exactly five feet and 15/16” tall?”
Me: “What do you think?”

Alex: “Exactly 15/16.”


Another trigger number for Alex is twelve, which sends him on a nostalgic journey to childhood along with some musing about another interest, the sound of people’s voices. He refers to higher pitched voices, such as those of children and some women, as “little voices,” which he finds pleasant.

Alex: “Twelve! [Referring to himself in third person] Alex had a little voice when he was twelve. That’s like the number of hours in a half day.”

Me: “That’s like the number of eggs in a dozen.”

Alex: [Cousin] “Hannah had a little voice until she was eleven. Why does Mommy say she was ten?”

Me: “I like to round numbers.” Alex finds my mathematical carelessness amusing.

Dates hold a special place in Alex’s heart because he loves calendars and has a gift for memorizing special dates, such as birthdays. When he hears the mention of dates from the past on the news or on Jeopardy, he immediately associates the year with something he remembers fondly.

Alex: “2000! That was the first year that began with a two.”

Me: “That’s true.”

Alex: “Gas prices were $1.04 in 2000.”

Me: [Teasing him]“Approximately or exactly?”

Alex: “Exactly!”

While numbers usually move him to begin a chat, sometimes a word that he associates with a number can also motivate him to engage me in conversation. He has a fascination with Phoenix, Arizona, probably because its climate is so different from ours. When he hears it mentioned on television, he and I go into the following routine. (Since today’s NASCAR race takes place in Phoenix, I anticipate that he and I will repeat this discussion at least a dozen times this afternoon.)

Alex: “Phoenix! It gets hot in Phoenix.”

Me: “Yes, it does get hot in Phoenix.”

Alex: “How hot?”

Me: “Around 100 degrees in the summertime.”

Alex: “One hundred degrees or 112 exactly?”

Me: “Exactly 112 degrees.” Satisfied that he has trained me in data precision, he will smile.

Yesterday evening, we went to one of our favorite family restaurants, where the hostess, Kayla, and Alex are on a first-name basis because she always engages him in friendly conversation. Even though he didn’t have a script for their chat, he managed to answer her questions and make his feelings clear.

Kayla: “Alex, would you give your meal five stars tonight?”

He thinks about this seriously.

Alex: “Four point five.”

Kayla: “Four point five?”

Alex: [Trying to make her feel better] “That’s ninety percent.”

Kayla: “What could make it five stars next time?”

Alex: “Serve shrimp.”

Kayla: “If I give you a whole plate of shrimp next time, what will you rate it?”

Alex: “Five stars.”

Although words still do not come easily to Alex, we are thankful for the progress that he has made through the years and for the confidence he is developing in his ability to express himself, even in unscripted situations. As much time as he spends thinking, reading, and mulling over details, we believe that he probably has a lot more to say. In the meantime, we enjoy our conversations with him, even those we have had numerous times with him, knowing how much he enjoys talking with us and other people. As God continues to heal Alex, we wait with patient anticipation, knowing that we will be rewarded when Alex’s voice can freely speak the words he wants to say.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Sunday, March 6, 2016

Perceptions of Children's Mental Health Issues

 
Yesterday I ran across an interesting online article published this week by the Huffington Post entitled “Why Every Parent Needs to Start Caring About Children’s Mental Health.” The author, Angela Pruess, a child and family therapist and a special needs parent, notes the stigma often attached with mental health conditions and emphasizes the need for greater understanding and awareness. [To read this article, please click here.] She explains that she has observed stigma both as a therapist of children and as the parent of a four-year-old daughter with anxiety and sensory processing issues. Perhaps if other people were less judgmental and better informed, she suggests, parents of children with mental health issues would be less ashamed and embarrassed.

The stigma associated with mental health issues that the author describes came as no surprise to me as the parent of a child with autism, a condition described in detail in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. In addition, Alex has also been diagnosed with anxiety and obsessive-compulsive disorder, two condition often associated with autism that are classified as mental disorders. While we have chosen to be candid about Alex’s condition, hoping to help other parents like us and bringing awareness to those unfamiliar with autism spectrum disorders, some parents keep their children’s condition secret, perhaps because of the fear of stigma. Some parents never use their children’s names in writing or speaking about them, using nicknames or pseudonyms, and others even hesitate to use the term autism when describing their children’s condition.

What did surprise me about this article was the statistic the author provides regarding the frequency of mental health issues in children. She cites research from the National Institute of Mental Health that shows “just over 20 percent (or 1 in 5) of children, either currently or at some point during their life, have had a seriously debilitating mental disorder.” Of course, the rapidly increasing rates of autism could be part of the reason for this staggering statistic. This would mean that in a typical class of twenty-five students, five of them would be classified as having “a seriously debilitating mental disorder.” While that may seem unlikely, I have noted in my more than thirty years of teaching seventh grade in public schools a significant increase in the number of students who do have serious issues.

In describing the stigma associated with mental health disorders, the author asks an excellent question: “Where exactly does this disconnect happen in our minds, allowing us to validate diseases and treatment of the body, but not a disease of the brain?” Those who have mental health conditions typically do not receive the same compassion that those who have chronic health conditions do. In addition, the author mentions uninformed people offering opinions on “overmedicating” children with mental health issues. However, these same people would likely never question giving children with diabetes insulin or treating children who have cancer with chemotherapy. Those whose nervous systems do not function properly need treatment and compassion, just as those who have any other type of illness.

In describing her own daughter and the issues she faces, the author asserts that she has great hope for her daughter and her future. Specifically, she notes that she hopes that her daughter “won’t be seen as ‘less than’ for a condition that was part of her genetic wiring just as much as her blonde hair color was.” While I share this same maternal hope for my son, I don’t completely believe that genetic wiring is solely responsible for why Alex’s brain functions differently. Moreover, I believe that the increase in the number of children with mental disorders is directly linked to toxins in our environment. While these children may be genetically susceptible to illness that affects their brains, assaults to their nervous systems from toxins in the air they breathe, the foods they eat, and the heavy metals injected in them through vaccines ultimately disrupt their chemical balances. These problems likely begin in their guts, which have recently been found to be critical to the immune system, and eventually impact their brains. What appears to be a behavioral issue more than likely stems from a physical condition. Perhaps instead of delineating mental health conditions as separate from physical ailments, modern medicine should recognize that they all have similar sources: disruptions of the typical body functions.

Specifically, we know from extensive testing that Alex suffered from heavy metal toxicity, and we treated him with chelation therapy in which sulfur pills bonded with the toxic metals of arsenic, aluminum, and mercury to remove them from his body. In addition, tests revealed that he has sensitivities to dairy products and glutens, which we have removed from his diet since he was seven years old. Also, he has struggled with yeast overgrowth in his digestive tract that we have treated for many years with a variety of anti-fungal medications and supplements. When he has yeast flares, his behavior reflects this illness, notably through his increased anxiety and OCD. Consequently, what may look like a behavioral problem could actually have a physical, rather than psychological, cause.

My belief in physical causes of mental health issues also comes from personal experience as someone who has dealt with anxiety and panic attacks throughout my life. The most intense phases of anxiety were during adolescence and in my mid-forties, which were times marked by significant hormonal changes. In addition, my thyroid levels must be monitored regularly to make sure that the thyroid medication I take daily (because of hypothyroidism related to the removal of most of my thyroid more than twenty years ago) is the proper dosage. If my thyroid hormone levels are even slightly off, I can easily go into a phase of insomnia, anxiety, and panic attacks. Lowering the level of thyroid hormone even minimally can return me quickly to my typical relatively calm self.

Instead of viewing autism as a mental health issue and focusing too much on possible genetic causes or stereotypical behaviors, more doctors and therapists should recognize autism as a physical condition that can be treated. If, indeed, the child doesn’t feel well, it’s likely that he or she will not behave appropriately. If the person with autism has hormones that are unbalanced, anxiety is likely to erupt. Rather than just attributing all the behaviors to autism, perhaps we need to look deeper and find the true physical cause.

Yesterday, my dad and Ed were setting up a new television for my mom. Early in the process, they were derailed because the screws they needed to attach the television to the base that holds it could not be found anywhere. After looking through all the packaging, they were convinced that the screws were missing and they would need to return the television to the store and get another one or at least the missing pieces. My ability to find lost items and my tenacity in never giving up motivated me to go look for the missing screws myself. In less than a minute I was able to find them in a tiny plastic bag taped to a larger plastic bag, saving a trip to the store and allowing the installation process to continue. What was different about my search from theirs? They kept looking where the instructions told them the needed pieces were and somehow missed what I found. I think autism is like that. Scientists keep looking in the wrong places, and too many people give up too quickly when they can’t find what they’re seeking. Just like those missing pieces I found yesterday, I truly believe that one day the missing pieces to the autism mystery will be solved. In the meantime, I will keep searching for answers and sharing what I’ve learned, hoping to erase any stigma of autism and to create greater understanding for those whose lives have been touched by this condition.

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.” Matthew 7:7

Sunday, February 28, 2016

Taking Charge/Letting Go

 
Several years ago, an assistant principal who has since retired from the school where I teach had a plaque on his office wall that read, “If it is to be, it is up to me.” He probably intended that message to the students who landed in his office for not following the rules as a lesson on responsibility. However, some of the staff also suspected that he intended that as a message for the teachers to handle our own students with discipline problems so that he wouldn’t have to deal with them himself. Nonetheless, the message resonated within me as I convinced myself that I was solely responsible for Alex getting better. I believed that if I worked and researched hard enough, I could find the best methods to help him overcome the struggles of autism. Four years ago when his anxiety and behavior began spiraling out of control, I was not only overwhelmed by the crisis our family was facing but also by the feelings of failure that somehow I was to blame for this.

What began with a detachment in which Alex began rarely speaking to us and lacked interest in doing anything except for lying on the couch or sleeping in his bed escalated to full-blown anxiety attacks in which he would angrily and falsely accuse us of misdeeds and physically attack us. Somewhere along the line, we had lost our sweet and docile boy and were living with a fully grown angry young man who was a stranger to us. Despite our best efforts to keep him engaged in activities and calm and happy, to not awaken the beast, Alex was dealing problems we couldn’t identify or solve for him.

During these excruciating months, I read and researched harder than I had ever done in my life, desperately trying to find the key to the place where Alex had locked himself inside. His family doctor had retired because she was very ill, and the doctor we were seeing was willing to try various medications but didn’t seem to have much experience with autism. We also took him to another doctor who was compassionate and holistic in his approach, but Alex seemed only marginally better with the treatments he recommended. Frantically, I kept looking for methods and supplements to ease anxiety and aggression in autism, yet none of the things we tried seemed to have much impact. In addition, I met with a therapist and a psychiatrist myself because Alex would not leave the house, and I tried to explain the desperate nature of our situation: we were losing our son to some sort of madness, and we had to get him back. While both of them were sympathetic, they didn’t have any real answers or anything new that we hadn’t already tried. Even though I had been willing to allow professionals to know the upsetting details of our private life, they were unable to help, which made me return to the plaque on the wall: “If it is to be, it is up to me.”

However, I was wrong. This battle was not mine to fight. Even though I had prayed throughout the struggles, I kept praying for God to show me the answers, for God to help me help Alex. Instead, if Alex was to get better, I needed to surrender to God’s will and to surrender Alex to others’ care. Admitting that I was not up to the task that I had devoted myself to for Alex’s entire life was harder than I imagined, but I had to do it for his sake. Clearly, he was not getting better at home, and nothing I did was helping him get better. Ed and I came to the hardest decision we would ever have to make; we knew that we would have to hospitalize Alex in a psychiatric ward. That hardest decision was ultimately the best decision we ever made.

During the weeks that Alex spent in the hospital, he finally received the treatment that he needed from knowledgeable and caring professionals, and he was put on medications that eased his anxiety and the subsequent aggression, so that he could enjoy life once again. Moreover, they explained to us that his behavior did have a reason. The Prozac that he had been taking for his OCD had suddenly stopped working, which meant that he was overwhelmed and unable to cope without an SSRI to help calm him. In addition, he was going through his final growth spurt, which brought hormonal changes, especially increased testosterone, that made him anxious and aggressive. Finally, we not only had answers to our questions, but we also had solutions to our problems. It was not up to me; it was up to God to lead us to the right people who could help Alex.

While Alex’s hospitalization was a heart-wrenching time, those weeks were necessary to help him get better, something that was not happening while he was at home with us prior to putting him in intensive treatment. Another unexpected blessing that came from this dark time was that his social worker during the inpatient stay provided invaluable assistance in getting legal paperwork in place (along with our kind-hearted lawyer neighbor who drew up documents on a Sunday afternoon and came to our home to go over them with us) to name Ed and me as Alex’s legal health care representatives so that we can make medical decisions regarding his care. His social worker also helped us navigate the complicated process of getting state support services for Alex by making countless phone calls to plead Alex’s case, making appointments with a doctor and a psychologist to assess Alex in the hospital for the state-required paperwork, and answering any questions we had about the process.

Although we had carefully followed all of the steps the state requires to get support services for a disabled adult, we knew that the waiting list to qualify was ridiculously long. Typically at that time, parents waited at least ten years for their children to qualify. Knowing this was in God’s hands and not mine, I prayed for patience. This was not up to me; it was up to a bureaucracy, and truthfully, I didn’t have a lot of faith in them. However, God moved mountains, and in less than three months after all of our stacks of paperwork were filed, we received a call that the state granted our request for an autism waiver, which meant that Alex could receive a variety of supports that he needed. Within a few weeks, we had a case manager to oversee his budget and services and a therapist to help us with his behavior. Moreover, he qualified for Medicaid retroactively six months, which meant that they helped cover hospitalization costs that our private insurance did not. The speed of this notoriously slow process is nothing short of miraculous; we cannot explain why things fell into place other than to give the glory to God.

This morning, I was reading Psalm 102 for the first time, something I should have been reading four years ago. This Psalm is described as “A prayer of one overwhelmed with trouble, pouring out problems before the LORD.” Remembering the desperation I felt during those dark times, I empathize with that Psalmist, who pleads, “Hear my prayer, LORD; let my cry for help come to you. Do not hide your face from me when I am in distress. Turn your ear to me; when I call, answer me quickly.” Four years later, I can proclaim that God did answer our prayers and provided even more than we asked. Not only did He provide the help Alex needed to get better, but He also returned our sweet son to us, and He made certain that we had a support team in place so that Alex could continue to make progress. What seemed to be a hopeless setback was, in fact, the appointed time for God to set in place His plans that were better than ours, to propel us forward faster than we imagined. Perhaps the true lesson should be, “If it to be, it is up to Thee.”

“You will arise and have compassion…the appointed time has come.” Psalm 102:13

Sunday, February 21, 2016

Thoughtful Acts of Kindness

 
“In spite of everything, I still believe that people are really good at heart.” ––Anne Frank

For several years we hesitated to take Alex places because his behavior was unpredictable, and we feared that he might become overwhelmed in a public place. While our first concern was avoiding upsetting him, we also didn’t know how others might respond to his behavior, and we tried to avoid uncomfortable situations. Even as he has improved over time, we feel a need to protect him from people who may intentionally or unintentionally not take kindly to his impaired communication and social skills. However, as we have recently begun taking him out to public places more often, we have been gratified to see how kind people truly are to Alex.

On Friday evening, we took Alex to a Valparaiso University men’s basketball game, which was very crowded and loud. Despite all the people, noise, and activity, Alex thoroughly enjoyed himself. At one point, the cheerleaders tossed mini-basketballs with VU logos on them into the crowd, but we were unable to catch one for Alex. Later, a pretty college girl who had apparently been sitting closer to the court earlier in the game came up to sit with her friends in front of us. She smiled at Alex, held out the mini-basketball she had been able to catch, and asked, “Would you like to have this?” Delighted, Alex took the basketball from her hand, smiled at her, and thanked her.

What she didn’t know after she turned around was that Alex held that little basketball the entire game and kept smiling at her. The next day he was worried that he had lost that small gift, and he was relieved and happy that I remembered where he had put it for safekeeping. What she didn’t know was that not only did she make a young man with autism happy by giving him a small token, but she also endeared herself to his parents with her kindness to their son. That pretty young woman became even more beautiful in our eyes because of her kind heart and generous spirit.

Last evening, we took Alex to our favorite family restaurant, Round the Clock in the nearby town of Chesterton. The atmosphere is quite relaxing, and the food and service are always excellent. Moreover, we have been impressed with how warm and friendly the staff members are to Alex. One young lady, Kayla, has waited on us several times, and she also works as a hostess there on weekends. Whenever she sees Alex, she greets him warmly by name, asks him questions, and patiently waits for him to answer. Last night, as she greeted us and showed us to our table, she once again engaged Alex in friendly conversation, and when we left, she made a special point to say goodbye to him.

What Kayla doesn’t know is that Alex is always happy to see her, even when he doesn’t look up at her. She may not see his shudder of joy when she smiles and calls him by name, but his mother sees it all. She may think that she’s just doing her job to be friendly to customers, but we know that she makes the special effort to make Alex feel welcome because she patiently waits for him to acknowledge her, never rushing him, even when she is busy. Moreover, she treats Alex like an old friend, and for this his parents are thankful.

Later in the evening, we took Alex to the middle school where I teach for a Mardi Gras celebration, filled with carnival games, loud music, and hundreds of excited middle school kids. Like the basketball game the night before, Alex thoroughly enjoyed himself in the midst of all the chaos. As we entered the gym, my friend and colleague Debbie, who has always taken a special interest in Alex and shown him kindness, greeted Alex warmly, gave him Mardi Gras bead necklaces (which he promptly put around his neck without any prompting), and handed him three tokens,  explaining that he was to use them to vote for his favorite games. Before we entered the crowded, noisy atmosphere, Debbie’s reassuring demeanor prepared Alex for the activities ahead. Although she would likely dismiss her kindness toward Alex as no big deal and assure us that she was pleased he could be part of Mardi Gras, Alex was happy to see a friendly face in the crowd, and we were grateful that she made him feel comfortable.

As we walked around the gym, I looked for games that I thought Alex could play so that he could be part of the celebration. Seeing a game with big dice being run by one of my former students, I asked him if he would like to play that one. While I knew my former student was a nice young lady, she showed exceptional kindness to Alex as she patiently explained how the game worked. As he tossed plastic peppers into a sombrero, she earnestly cheered for him and encouraged him to stand closer, trying to help him win a prize. After the game was over, she sweetly told him, “Thanks for playing.” What she didn’t know was that he walked away with a grin on his face, pleased that he could participate in one of the games because she had helped him understand the rules. What she also didn’t know was that her former teacher will not only remember her always as an excellent student but also as a wonderful person who was kind to her son.

Spotting a game that was similar to his favorite game on The Price is Right, Plinko, I suggested that he try that one. In addition to the game itself being familiar to him, I was also reassured because the student running the game is one of my nicest students this year. She sweetly explained to Alex how the game worked and allowed him to have a second chance when the golf ball didn’t run down the Plinko board as it was supposed to do. When Alex’s ball landed on the winning spot, she cheered for him, even though it meant that he could throw a pie in her face. Knowing that Alex was not comfortable doing this, I explained to her that she didn’t have to do that, but she put the pie in her own face as a good sport. Smiling at Alex with whipped cream on her face, what she didn’t know was that he found the whole thing amusing. What she also didn’t know was that she has now found a special place in her English teacher’s heart because she took the time to help and understand Alex.

In an age where people often respond to expressions of thanks with “No big deal” or “No problem,” those who are kind to Alex should know that it is a big deal to us, and we see the extra effort, even if they assure us it was not a problem for them. Little things truly mean a lot to Alex, even if he can’t always express the gratitude he feels, often because he is overwhelmed by the kind acts. Moreover, as his parents, we always appreciate those who take them time to engage Alex, to speak to him in a way that is never condescending or patronizing, and to make him feel part of a community. In doing so, he has opportunities to practice his social skills, to enjoy interacting with others, and most of all, learning how to be kind to others because they have been kind to him. What may seem like a small act, indeed, has greater impact than people may ever know. However, we notice those who treat Alex with kindness, and we feel blessed.

“…And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8

Sunday, February 14, 2016

Make a Joyful Noise

 
As I have mentioned in previous blog entries, Alex usually speaks quietly, often making understanding what he has to say difficult. In fact, one of the areas his therapists and we have worked with him to improve is making his volume audible so that he can be heard. As they have pointed out to us, in order to advocate for himself, Alex will have to speak up and make sure he is heard. Even though we are willing to ask him to repeat what he has said until we understand what he wants to tell us, other people may not be as patient with him. For this reason, we have worked with him on his volume and had him practice asking and answering questions he would need in social situations, such as ordering his food in a restaurant, something he does regularly on our Fun Friday recreational therapy outings.

I don’t know whether he speaks quietly because his hearing is so acute that his voice sounds louder to him than it does to other people, or perhaps he feels unsure about speaking aloud because he knows speech is one of his weaknesses. Of course, like any skill, he has needed to practice to improve, and we have been pleased with the progress we have seen. Recently, his music therapist commented that Alex rarely has to repeat something he has said because he is speaking with an appropriate volume most of the time now.

A couple of weeks ago, Alex came downstairs and enthusiastically told us how low gas prices were and specifically named the price at a local gas station. One of his interests is following oil prices every day and observing how they affect gasoline prices. He went on to tell us that this was the lowest price in many years and cited the specific year in the past when gasoline prices were that cheap. Because Alex was so excited about these low gas prices, Ed suggested that we go fill my car’s gas tank at the station Alex had found online, even though it was 9:30 at night. Alex was even more excited that we were actually going to the gas station, and he was delighted to be going along for what he perceived to be a grand adventure. Essentially, he was being rewarded for speaking up and sharing his knowledge with us.

Yesterday afternoon, I could hear men’s voices talking upstairs, and I realized that Alex and Ed were having a conversation. Even through the closed door of Alex’s room, I could hear their discussion about the upcoming Valparaiso University men’s basketball game that evening. In the past, I would have been able to hear Ed’s voice but not Alex’s, and it was nice to be able to hear him matching Ed’s normal conversational volume. As I briefly eavesdropped, I was happy to hear them talk about a shared interest, something we once wondered if Alex would ever be able to do.

In addition to speaking up more, Alex has also been singing in a louder voice lately. One of the many benefits of music therapy is that Alex has learned to sing along to songs he enjoys. When he first started music therapy, he would just listen to the songs or maybe play a percussion instrument or accompany on keyboard, playing all the wrong notes. With time, he gradually began singing along, but he would barely sing, so that he appeared to be lip syncing. Now, as we watch American Idol together every week or listen to music on the cable Music Choice channels or listen to the radio in the car, I often hear Alex’s voice, sweet but off key, like mine, singing along to the lyrics.  As I listen to him sing, I wonder if singing has helped his speech because he can recite words that are familiar while gaining practice with his articulation and volume. Nonetheless, we just like listening to him sing because it clearly brings him joy.

Last night at the university basketball game, Alex thoroughly enjoyed himself, even though our team lost. After going to several games this season, he knows the routines of when to stand, when to sit, when to clap, and when to cheer. When the first notes of the VU fight song play, he immediately stands with the rest of the crowd. When the cheerleaders run to the floor with signs, he eagerly anticipates the chant of “HEY, VU!” followed by, “V-A-L-P-A-R-A-I-S-O, LET’S GO, VALPO, LET'S GO!” In addition, he recognizes familiar songs the pep band plays, and he smiles and gently rocks when they play his favorite tunes.

One of his favorite songs they play is “Livin’ on a Prayer” by Bon Jovi, one of his favorite groups, whom he used to call “Bon Jo-bee” when he was younger. I found it interesting that the student section was singing the chorus to this song loudly, even though none of them were even born when this song was popular in the 1980’s. Sometimes Alex sings along with them; mostly he smiles as he listens. To encourage him to sing along, I sing the words in his ear, and I realize that these words have meaning for us, a promise we will get past the obstacles autism has presented our family:

“Whoa, we’re halfway there; whoa, livin’ on a prayer.
Take my hand; we’ll make it, I swear. Whoa, livin’ on a prayer.”

When Alex was younger, we prayed for the time when we would be able to have conversations with him, and we worked hard to get him to speak more, wanting to know what he would have to say. While he still struggles with speech, he can now give us some insights into his thoughts, sharing his enthusiasm about gasoline prices, basketball, or a familiar tune. I’m certain that with more time and more practice, he will have more to say. Indeed, we are “halfway there,” and for that, we are truly grateful. Alex, “take my hand; we’ll make it, I swear. Whoa, livin’ on a prayer.”

“Make a joyful noise unto the Lord, all the earth; make a loud noise, and rejoice, and sing praise.” Psalm 98:4

Sunday, February 7, 2016

Keys to Success

 
Yesterday I read an interesting article that made me think about the most valuable skills we can teach children, whether they have autism or not. This article was linked on the Indiana Resource Center for Autism’s Facebook page and was published on their website, which has a wealth of resources and information regarding autism. [To read this article on their website, please click here.] Written by graduate student Anna Merrill, “Tools for Successful Transition: Self-Determination, Resilience, and Grit” identifies three key traits that will help adolescents, particularly those with autism, develop into successful adults. She notes that self-determination, resilience, and grit are important for positive outcomes, such as employment, independence, and a better life for adults.

The first of these traits, self-determination, focuses upon pursuing and obtaining goals, which are needed for a sense of well-being. Ms. Merrill lists several strategies to develop self-determination in adolescents, such as teaching goal-setting and problem-solving skills, encouraging decision making, and promoting self-awareness and self-advocacy. In addition, she provides practical suggestions, including participation in planning meetings, developing listening and effective communication skills, learning to deal with stress and frustration, and self-evaluation of interests, strengths, and weaknesses.

I found these strategies interesting because Alex’s support team––his case manager, behavioral therapist, music therapist, and respite staff, along with Ed and me––all use these approaches to help him make decisions and become more independent. This Wednesday, we will have a quarterly meeting with his team to discuss his progress and needs. As always, Alex is expected to be an active participant because he will need to answer questions, even though verbalizing his thoughts and feelings isn’t always easy for him. Nonetheless, we all know that his input is vital to developing his skills and planning for his future.

The second trait detailed in the article is resilience, the ability to cope despite adversity and the refusal to give up. To deal with challenges, Ms. Merrill notes three important elements crucial to resilience. Specifically, developing positive personal traits, such as optimism and self-esteem, is vital to resilience. In addition, family relationships, including a nurturing environment and a stable home life, help develop resiliency. Along with family support, community support, such as connections with extended family and involvement in community activities, also foster resilience. Essentially, a good attitude and the support of caring people help a person learn to deal with challenges effectively.

Despite the obstacles autism has presented, Alex has learned to be quite resilient. He maintains a positive attitude most of the time and rarely complains about how difficult some tasks are for him, due to his fine motor and communication limitations. In addition to our love and support, he now has a team who provides support, and because his behavior has improved, he has more opportunities to interact with extended family and to engage in community activities, such as music and sports, which he thoroughly enjoys.

The final quality needed for success, according to the article, is grit, which is related to resilience in that grit is the perseverance despite obstacles, the tenacity to pursue goals, no matter what. To develop grit, Ms. Merrill recommends encouraging a growth mindset that emphasizes the value of the process and not just focusing on the outcome. Grit requires persistence, a desire to learn, and valuing challenges, effort, and criticism.

The importance of grit makes sense to me because Alex is one of the most tenacious people I’ve ever known. (I’m pretty tenacious myself, so he may have inherited or imitated that quality from me!) I’m certain that one of the main reasons he has made so much progress over the years is that he never gives up and keeps on trying, despite the obstacles autism has created. For example, if he tries to tell us something, and we don’t understand what he’s saying, he will keep giving us clues until we figure out what he wants to communicate. To watch him eat is often a lesson in grit because his fine motor skills can make eating difficult. Nonetheless, he never gives up poking or scooping with his fork until he is able to get food in his mouth, which is the reward for his efforts.

After detailing the three qualities needed for success, this article also discusses what may hinder the development of self-determination, resilience, and grit. The author notes that parents may prevent their special needs children from developing these important traits with the best of intentions. Specifically, parents may want to protect their children or may not want them to fail, so their children do not develop these qualities necessary for success in life. She recommends that parents focus more on long-term goals than daily goals and push out of their comfort zones, which is in the best interest of their children so that they may successfully become independent adults.

With the best of intentions, I have been a full-fledged helicopter parent to Alex, I admit. Because he could not speak well, I have been too quick to speak for him. Because fine motor skills made basic tasks difficult for him, I have been his extra pair of hands. Because I feared for his safety, especially since he is naively trusting and doesn’t always sense danger, I have held onto him tightly. And for less noble reasons, sometimes because I was in a hurry, I did things for him because it was faster and easier than waiting for him to do it himself. Although I have enabled him in many ways, I know that he must learn to be independent because I won’t always be around to fix him a snack, or zip his jacket, or remind him to go to the bathroom before he leaves the house.

Because Alex has learned good coping skills and is less likely to become overwhelmed, we have been encouraging him to make his own decisions. At first this was difficult for him because he was used to us telling him what to do. After teaching him how to weigh his options, he is becoming quite adept at making reasonable choices, and he seems to feel proud that he can decide for himself. In addition, I am learning to walk away and let him do things for himself instead of watching him struggle and then taking over for him. For example, he may have to take a dozen attempts to hang up his jacket, but I can’t grab it out of his hands, or he’ll never learn to do it on his own. With more practice, he’s getting much better at hanging up his coat in fewer tries, but more importantly, he feels a sense of pride for doing this task by himself.

This sense of independence has carried over in other aspects, as well. Recently, Alex has begun consistently bringing his dishes and forks to the sink after he’s done eating without being reminded to do so. In addition, he has become more involved in planning his schedule, making sure that we know the dates and times of basketball games or television shows he doesn’t want to miss. Also, he has shown more autonomy in his health, letting us know when it’s time to take his pills and wanting to learn all the names of them, identifying them by color and shape. Rather than relying upon us for every aspect of his carefully planned schedule, Alex is becoming more self-reliant, and he likes being a more active participant. With these small steps, he works toward our ultimate goal––independence, and we know that God will be with Alex every step of the way.

“So we keep on praying for you, asking our God to enable you to live a life worthy of His call. May He give you the power to accomplish all the good things your faith prompts you to do.”  2 Thessalonians 1:11