Sunday, May 22, 2016

Courtesy

 
As the school year winds to a close, I have been trying to figure out what last lessons I want to teach my students in the upcoming few days I have left with them. The other day, I ran across a list Reddit compiled of courtesies that are not always practiced, which I think I will share with my classes. Posted on the website 22 Words by Abby Heugel, this list is titled “30 Things So Obvious You Should NEVER Have To Be Asked To Do Them.” [To see this list, please click here.] After running errands yesterday morning and running into all sorts of rude behavior, I realized that far too many people either have not learned these supposedly obvious lessons or have chosen to ignore them and need to be reminded of them.

Perhaps the value of these polite concepts is clearer to me because autism impairs Alex’s social skills, and we must remind him to use his manners. As an autism mom who constantly strives to make Alex a better person and as a teacher who wants to share what I’ve learned, I would like to pass along these helpful social skills. Of course, the English teacher in me needed to revise the wording and reorganize the list order from its original format, but I hope these important lessons may prove useful.

Driving and Door Do's

When driving, use the turn signal so other drivers know your intentions.

When another driver lets you in, give them the “thank you” nod or wave.

When someone holds the door open for you, say thank you.

Let the person who held the door for you go ahead of you in line.

Golden Rule Reminders

Say please and thank you to customer service employees.

Be courteous to waiters and waitresses.

“Clean Up, Clean Up, Everybody Clean Up!”

If you made a mess in public or at work, clean it up.

Put away equipment you used at the gym.

Clean up after your dog.

If you are a guest at someone’s house, clean up any messes you made.

Throw away your garbage.

Before putting dishes in the sink or dishwasher, scrape off the food.

Close doors, cabinets, and drawers when you are finished.

Restroom Rules

After using the toilet, flush it and wipe away mess on the seat.

If the toilet paper roll is empty, replace it.

After using the bathroom, wash your hands.

When washing your hands in a public restroom, don’t leave a mess with the water and paper towels.

Shopping Etiquette

Don’t suddenly stop walking in the middle of an aisle or sidewalk.

If you are in line with a full cart, let the person with one or two items go ahead of you.

Don’t leave shopping carts in parking spots; put them in the return areas.

Common Courtesy

Don’t take up an extra seat with your belongings if the bus or train is getting full.

Be punctual, and if you’re going to be late or not going, let the other person know.

Close your mouth when you chew.

When you cough or sneeze, cover your mouth.

Respect personal space.

Make your children behave in public.

On weekends, don’t use your lawn mower before 8 A.M.

If you owe money, pay it back.

Don’t interrupt when someone is speaking.

When you are conversing with people, look at them and not your phone.

After reviewing these thirty helpful suggestions, I noticed the common thread involved in common courtesy: we must put others’ comfort and feelings ahead of our own inherently selfish behaviors. While this may not always come naturally, certainly the benefits are worthwhile. I’m reminded of a line in the play that I teach my seventh graders every year, A Christmas Carol: Scrooge and Marley, said by Jacob Marley: “An act of kindness is like the first green grape of summer: one leads to another and another and another…the gift of goodness one feels in the giving is full of life. It…is…a…wonder.”

Certainly, I hope my students leave my classroom with increased knowledge of literature and writing and critical thinking, but more importantly, I hope they take with them a value of kindness and courtesy, the same lessons I have been teaching Alex for more than two dozen years. Although manners and polite social behavior don’t appear in state standards for instruction, nor are they part of standardized testing, I’m convinced that few things in life are more valuable than learning social skills. And now, I’m off to clean up the mess of papers and books I’ve left on my coffee table; after all, that’s the polite thing to do.

“Do to others as you would like them to do to you.” Luke 6:31

Sunday, May 15, 2016

The Yeast Beast

 
“But when it is a bad plant, one must destroy it as soon as possible, the very first instant that one recognizes it. Now there were some terrible seeds on the planet that was the home of the little prince; and these were the seeds of the baobab. The soil of that planet was infested with them. A baobab is something you will never, never be able to get rid of if you attend to it too late. It spreads over the entire planet. It bores clear through with its roots… ‘Children,’ I say plainly, ‘watch out for the baobabs!’” Antoine de Saint Exupery, The Little Prince

Every May I teach the novel The Little Prince to my honors seventh grade students. Last week as we were discussing the problem of the baobabs, we talked about the symbolic meaning of those terrible plants. As we brainstormed what the baobabs might represent in today’s society, my students suggested rumors, wars, pollution, and disease, to name a few issues. We talked about the importance of not procrastinating and taking care of problems right away so that they did not get out of hand. The more I thought about the insights they shared, the more I realized that we have been dealing with a baobab of our own for several years: Candida overgrowth in Alex’s digestive tract.

As I have mentioned in previous blog entries, Alex has a tendency to develop thrush in his mouth and throat, which likely spreads to the rest of his digestive system. Not only does this fungal infection make his mouth and throat sore, but it also significantly impacts his behavior. Often the obvious symptoms that he has a Candida flare are increased OCD behaviors, agitation, and even aggression. Over the years, we have treated this problem with various prescription antifungals, such as Diflucan, Nystatin, Ketoconazole, and Itraconazole, along with natural antifungals, including caprylic acid, oregano, garlic, and undecenoic acid. In addition, we have boosted his immune system with vitamins B, C, and D and increased the good bacteria in his system with probiotics. Nonetheless, keeping Candida under control has been a constant battle, and like the baobabs, we try to destroy it as soon as it appears, knowing how physical and emotionally uncomfortable it makes Alex.

This week I also ran across two articles in my continual research for ways to help Alex that suggest a link between fungi and brain disorders. In an article from The Economist published October 24, 2015, entitled “Fungus, the bogeyman: A curious result hints at the possibility dementia is caused by fungal infection,” this potential link is described. [To read this article, please click here.] Citing information published in Scientific Reports, the article describes research done by Dr. Luis Carrasco at the Autonomous University of Madrid in Spain. While the cause of Alzheimer’s disease is still unknown, Dr. Carrasco’s research suggests fungal infection is linked to the disease.

After examining brain tissue from cadavers, none of those who did not have Alzheimer’s had any fungal infection. However, all of the Alzheimer’s patients had fungal cells growing in their neurons. What they could not discern was whether the fungal infection caused the Alzheimer’s or whether the Alzheimer’s made the patients more susceptible to fungal infection. The article also notes that many patients with Alzheimer’s have damaged blood vessels, and Dr. Carrasco noted fungus growing in blood vessels. Although more research is needed to clarify the link between Alzheimer’s and fungal infections, this report indicates potential benefits of treating elderly patients with antifungals.

In another article I read this week, the connection between yeast infections and mental illness is discussed. The article “Yeast Infection Linked to Mental Illness,” published May 4, 2016, on the Johns Hopkins Medicine website discusses research done by Dr. Emily Severance and her associates at Johns Hopkins University that was suggested by people with mental illness. [To read this article, please click here.] This study found that a history of Candida yeast infections was more common in people with schizophrenia and bipolar disorder than in those who do not have these mental illnesses. In addition, they also noted memory loss in women with Candida infections. While researchers are careful not to name yeast overgrowth as a cause of mental illness, they note that more research needs to be done regarding connections between mental illnesses and gut-brain connections and weaknesses in the immune system.

While these recently published research studies are linking fungi to Alzheimer’s, bipolar disorder, and schizophrenia, the link between yeast and autism has been known for years. Thanks to the research of Dr. William Shaw of The Great Plains Laboratory, the importance of diagnosing and treating fungal infections in children with autism has been part of the biomedical protocol. Dr. Shaw’s laboratory offers Organic Acid Tests that detect fungal byproducts produced in the intestinal tract that are absorbed into the bloodstream and later filtered into the urine. In addition, his laboratory offers yeast culture and sensitivity tests that recommend which antifungal medications are most effective in treating the strains of yeast found in the organic acids test. We have had both tests run on Alex several times and have found the results very helpful in trying to address his yeast overgrowth problems. Pursuing this course of treatment has been extremely valuable to us because when the yeast is under control, the difference in Alex is night and day. Clearly, the yeast makes him uncomfortable, affects his brain, and impacts his behavior negatively. Within a short period of being on antifungals, he returns to his sweet and pleasant disposition. Consequently, we destroy our baobab­––yeast––as soon as possible.

Clearly, more research needs to be done on the role fungus plays in various disorders that affect the brain: Alzheimer’s, schizophrenia, bipolar disorder, and autism. If, indeed, fungus causes or exacerbates these conditions, aggressive treatment with antifungals may improve the symptoms or perhaps even cure the conditions. On the other hand, if the root cause of the disorders is weakened immune systems, improving immunity with vitamins may also improve or cure the conditions. Instead of simply viewing Alzheimer’s, schizophrenia, bipolar disorder, and autism as mental conditions, doctors need to recognize physical conditions that impact the brain and affect the behavior. Until a more holistic approach is taken with these disorders, more and more people and their families will suffer the consequences of undiagnosed underlying medical conditions that could be healed, substantially improving the quality of life for the patients and their families.

“But for you who fear my name, the Sun of Righteousness will rise with healing in His wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2

Sunday, May 8, 2016

Alex's Mom

 
Twenty-five years ago, just before Mother’s Day, I found out that I was going to be a mom. All I had ever wanted to be in life was a mom, probably because God had blessed me with such a wonderful mother, and I wanted to be loving and caring, just like her. At the time, I didn’t realize that this baby I was carrying would be my only child, and he would have autism. Truthfully, this was not what I had planned for my life because I had wanted to have more than one child, and I wish more than anything that Alex never had to struggle with autism. Nonetheless, God’s plans are always greater, and I know that He gave me Alex because Alex was exactly the child I needed. On this Mother’s Day when children express their gratitude for all their mothers have done for them, I am thankful for all Alex has done for me.

Before I had Alex, I saw myself as fearful, avoiding difficult situations whenever possible.

Because of Alex, I have had to become bolder, making sure that he gets everything he needs.

Before I had Alex, I had kind and compassionate people in my life.

Because of Alex, I have even more kind and compassionate people in my life whom I never would have met, had Alex not had autism.

Before I had Alex, I thought I was a pretty good judge of character.

Because of Alex, I am able to see the purest hearts: those who see Alex’s goodness, are drawn toward him, and reach out to him in kindness.

Before I had Alex, I enjoyed the peace and solitude of praying alone before I fell asleep every night.

Because of Alex, I know there is nothing better than to listen to the earnest bedtime prayers of a child whose faith and hope in God are complete.

Before I had Alex, I wanted to write about something meaningful.

Because of Alex, I have someone meaningful to write about.

Before I had Alex, I was impatient and disliked having to wait for anything.

Because of Alex, I have learned to be more patient, have tried to look forward with anticipation instead of frustration, and have learned Alex’s motto: “Wait and see.”

Before I had Alex, I loved my husband, Ed.

Because of Alex, our love for each other has grown even stronger as we have shared struggles and triumphs, working together to make the best life possible for our beloved son.

Before I had Alex, I was thankful to have loving and supportive parents as a child.

Because of Alex, I am very grateful to still have my parents close at hand because I have needed their faith, love, and support even more as an adult raising my own child.

Before I had Alex, I had faith in God.

Because of Alex, my faith has been tested mightily, and I trust God more than I ever thought I could.

Before I had Alex, I was happy.

Because of Alex, I know true joy.

Shortly after we found out that Alex had autism, Ed commented that Alex would be a little boy longer because he would need us to do things for him longer than other children, who could be independent sooner. Whenever I am tying his shoes or cutting his meat or zipping his jacket because autism has impaired his fine motor skills and medication makes his hands shaky, I wonder when he will be able to do these tasks by himself. As he towers over me in his tall young man’s body, he grins and cooperates, knowing that as his mom, I will take care of his needs until he can do them on his own. In the meantime, I’m also his personal assistant who coordinates his support team, the home pharmacist who oversees his medications, the trivia buff who plays Jeopardy with him every weekday afternoon, his personal chef who prepares gluten-free and dairy-free food for him, and his laundress who makes sure all his clothes are clean. The other day, he informed me––perhaps because he knew this proclamation would please me––that I was also his best friend. How richly God has blessed me by making me Alex’s mom!

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25

Sunday, May 1, 2016

Managing Worry

 
Although Autism Awareness Month is officially over for another year, families affected by autism know that awareness is an everyday occurrence, not just something to consider for thirty days of the year. For our family, April was a month focused on dealing with Alex’s increased anxiety and figuring out ways to lessen his stress, which is also ours. We are blessed to have outstanding professionals who work with Alex, understand both autism and anxiety, and help us brainstorm ways to make him better. However, as Alex’s parents and round-the-clock caregivers, Ed and I know that the primary responsibility of teaching Alex how to cope falls squarely upon us. Thankfully, we are seeing improvement.

According to a research article published in April 2009 in Clinical Psychology Review entitled “Anxiety in children and adolescents with autism spectrum disorders,” 11%-84% of children diagnosed with an autism spectrum disorder also “experience some degree of impairing anxiety.” [To read this article, please click here.] Additionally, research shows that more than 55% exhibit symptoms of at least one anxiety disorder. Consequently, more than half of children with autism also must deal with anxiety.

Another scholarly article published by the Indiana Resource Center of Autism entitled “Anxiety and Autism Spectrum Disorders” notes that anxiety appears to occur more often in those with higher functioning autism. [To read this article, please click here.] Researchers suggest that those who are higher functioning appear to have a greater awareness of their environment and of how others perceive them, which could lead to greater anxiety. On the other hand, those deemed lower functioning may lack the language skills needed to express their anxiety. Nonetheless, many people with autism, no matter what their functioning level may be, need support in dealing with anxiety.

This article goes on to recommend cognitive-behavioral therapy as the best way to teach people how to cope with anxiety. Cognitive-behavioral therapy focuses on identifying negative and irrational thought patterns in which the person may overgeneralize, as well as finding new ways to think about situations. For example, when Alex becomes anxious, he will jump to the conclusion that something he wants to do will never happen, and his negative assessment of the situation makes him more anxious. By working with his behavioral therapist, he is learning to reassess circumstances in a more realistic way and to use coping skills to keep his negative thoughts from escalating into a full-blown panic attack. In addition, we must reassure him that things will be all right while never diminishing his feelings that are very real to him.

Another struggle Alex faces in addition to his anxiety is his impaired verbal skills that make expressing his feelings difficult, especially when he is upset. For this reason, he may resort to nonverbal communication, such as silently scowling, grabbing, or even hitting, to let us know he’s upset. Clearly, these behaviors are not socially acceptable, so we keep working with him to develop ways to deal with his anxiety and frustration that allow him to express his feelings verbally. I’m sure that he is tired of hearing us say, “Use your words, not your hands,” but he needs to learn better ways to cope with his anxiety.

One of the best skills Alex has learned in life is how to do research on topics he finds interesting. Not only is he adept at finding information online, like many young people his age, but he is also quite skilled at doing old-fashioned book research. Over the years, he has acquired a nice collection of reference books that he regularly consults whenever he wants to learn more about a particular subject. A few nights ago, after Alex went to bed, Ed discovered that he had been consulting one of his beloved medical books. The Mayo Clinic Family Health Book, a nearly 1500 page guide, was opened to an article that Alex had apparently been reading––“Coping with Anxiety.” Bless his heart; he was trying to figure out how to help himself. Apparently, his research proved useful because he seems better. He identified the problem, searched for solutions, and then put the helpful tips into practice. To summarize, this article recommends the following:

1. Take action. Figure out the cause of stress and deal with it.

2. Let it go. Put aside the past, make changes if you can, and [Alex underlined this] “let the rest take its course.”

3. Break the cycle. Deal with anxiety by distracting yourself with exercise or a hobby.

4. Take care of yourself. Get plenty of exercise, rest, and relaxation, and eat healthy.

5. Talk to someone. Discuss problems with friends, family, or a counselor.

In addition, we have been trying to teach Alex how to verbalize when he’s frustrated, assuring him that he can let us know when he’s upset. This week, I told him that when my sister, his adored Aunt Tammy, was a little girl, she would stomp off whenever she got upset and yell, “I’m mad, and I mean it.” Although he seemed to find this anecdote amusing as I was telling it to him, clearly he took the message to heart, as we discovered a few days later.

On Friday, Alex became worried, trying to figure out how to rearrange his precious schedule so that he could do several things he wanted to do. As Ed and I tried to help him by offering suggestions, he became more frustrated because he wanted to take charge of the situation. As he walked away from us, heading upstairs to his room, he informed us, “I’m mad!” When he got to his bedroom door, he emphasized the point by yelling down to us, “And I mean it!” Respecting his space, we left him alone, and in a few minutes of peaceful solitude in his room, Alex figured out on his own not only how he could rearrange his schedule but also how to calm himself down without any help from us. Essentially, he is learning two valuable lessons: how to cope with stress and how to be independent.

The other day when the three of us were riding in the car, Ed remarked to Alex that we are very proud of him. Unsure of whether Alex knew what he meant, he asked Alex if he knew the definition of the word “proud.” Since Alex didn’t seem certain, Ed went on to give examples of why we are proud of him, including how pleasant he is and how nicely he behaves when we take him places. Alex nodded and smiled and said, “Proud means impressed.” We were impressed (and proud) that he found the perfect synonym, but we were even more pleased that he understood what we were trying to convey to him. Although we hate that he has to struggle with autism and anxiety, we are proud of how well he copes with these issues the vast majority of the time. Moreover, we are impressed with his desire to overcome obstacles, even trying to manage them independently. While we hope that we have taught him what he needs in life, we know the real source of his strength lies in his faith in God, and that, too, makes us proud as his parents.

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done.” Philippians 4:6

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