Wonderful Joy Ahead

 

After writing this blog for nearly six years, each week I wonder when I’m going to run out of ideas. Some weeks, the inspiration is clear as a bell: Alex does something interesting or reminds me of something important, and other weeks I find articles or essays that inspire me. Either way, I know what I want to write. Other weeks, I feel like a contestant on the Food Network Channel competition show Chopped during the mystery basket round. For that challenge, the chefs must prepare a dish using four items found in their mystery baskets. Usually three of the items seem to work together, but the fourth food item throws them for a loop, and they must figure out how to make it work with the other three. For example, they might be given chicken, rice, and soy sauce, and the odd item is chocolate syrup. Somehow, the successful chefs figure out how to make all four items blend together in harmony.

This week, I had a mystery basket of my own of ideas for my blog, and I need to emphasize that I know what I’m supposed to write because these ideas roll over and over in my mind and are the first things I think about when I awaken in the morning. For this week's blog entry, I was moved to write about an inspirational blog entry by another special needs mom, a scripture I saw on Instagram, Alex’s experience during a lab test this week, and the Facebook viral video of a mom wearing the Star Wars' Chewbacca mask. Let’s see if I can pull these four items together.

Yesterday, I read a heartfelt blog entry written by special needs mom Lindsay Franks entitled “When God’s Plan Doesn’t Seem Wonderful.” [To read this essay, please click here.] As she describes disappointments and struggles that all people face, she notes, “my own sufferings have shown me the sufferings of others.” From my own experience, I know this is true. I have gone from being a sympathetic person to an empathetic one. She goes on to say that we try to face these obstacles with a positive attitude: “And we slap on happy faces and pretend that all is good.” However, I think that over time, this optimistic attitude becomes real, and we no longer need to pretend because we know that all is well, in spite of the storms. Certainly, we may face setbacks and discouragement, but the joy is genuine.

Noting the frustration we feel when these obstacles are ongoing, Lindsay Franks asks, “What happens when you cry out for Him to take a burden away and He doesn’t?” She explains that these trials build our character and shape our faith, and she notes that God gives us grace to deal with problems that could overwhelm us. In addition, she contrasts “earthly sufferings” with “future glory (heaven),” reminding us that these struggles are only part of this brief time on earth and that we will understand God’s plan when we begin our eternal lives in heaven. Of course, this is where we must fully trust God.

I confess that I have always believed Alex will be healed of autism some day. While I know for certain that his body and mind will be healed in heaven, trusting that God will heal him here on earth, especially since all the so-called experts say that autism is a lifelong condition, requires constant fighting of doubt as well as fervent and hopeful watching for signs of improvement. You see, I have witnessed enough goodness in my own life that makes me confident God can take the autism away at any time. I hold fast to the promise of Psalm 27:13, “Yet I am confident I will see the Lord’s goodness while I am here in the land of the living.” While I look forward to heaven, I also believe that on earth greater joy comes from suffering because we know God has given us strength to overcome obstacles in life.

Yesterday, I was reminded how despite the obstacles autism creates for Alex, God has also given him remarkable strength. While it’s not fair that Alex must undergo regular blood draws to monitor the effects anxiety medication has on his body, he never gets upset by the procedures and never complains. When we asked him if he wanted to go to the lab to have blood tests last evening, he immediately said yes and happily skipped to the door. During our brief wait at the lab, he was calm and pleasant, and he was happy to see a familiar friendly lab technician who would draw five vials of blood for the tests. As she chatted with him, he answered all of her questions, and he watched as his blood ran into the test tubes. Holding his hand, I was amazed by his calmness, never flinching the entire time. She enthusiastically remarked several times how good Alex always is and told him what a great patient he is. Of course, Ed and I are pleased that he cooperates so nicely, but I also know that God has placed peace within Alex so that he doesn’t get upset by a situation that is uncomfortable to most people, even those who don’t have autism. While most would dread having a blood test, Alex isn’t bothered a bit and sees the experience as an adventure. He walked in smiling and left smiling; now that is pure joy.

Recently, a Facebook video of a woman who was delighted with her purchase of a mask featuring the Star Wars' character Chewbacca received record views and national attention. [Yes, Chewbacca mom is the chocolate syrup in the mystery basket this week.] What made so many people want to watch this woman putting on a mask? Of course, it was funny to watch a typical mom put on a mask intended for a child, especially since it made funny noises, too. However, the best thing about that video was how something so simple made her so happy. As she laughed with delight and talked about how happy she was, the viewer couldn’t help but laugh and smile with her because her unabashed joy is simply contagious. How much better life would be if everyone could find happiness in unexpected places, like she did!

Thinking about her joyful attitude, I realized that Alex is like that. He has also been blessed with a joyful spirit that allows him to be happy in spite of what autism has taken from him. Give him some shrimp to eat, some little kids’ voices to hear, a song on the radio he likes, or any other seemingly small good thing in life, and he is delighted. A smile spreads across his face, he begins to shudder with excitement, and he leans forward and puts his hands between his knees as though to keep from exploding with the genuine joy he feels. How much better life would be if everyone could find happiness in unexpected places, like Alex does!

My musings on joy this week––from Chewbacca mom to blood tests to Lindsay Franks’ essay––actually began with seeing a Bible verse I don't recall reading before. My cousin posted on Instagram a picture of a plaque her daughter had painted for her with the scripture from 1 Peter 1:6. After reading this verse in various translations, I know that seeing it was no accident; I was meant to be reminded that God, indeed, has a good plan for Alex, who seems to know already that “wonderful joy is ahead.” No wonder he is “truly glad”!

“So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while.” 1 Peter 1:6

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

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

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

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