Sunday, June 19, 2016

Alex's Dad

 
Raising a child is no easy task, and being a parent of a child with special needs adds a whole new set of unimagined responsibilities. After more than two dozen years of watching Ed rise to the challenges of raising our son with autism, I am amazed by the patience he has developed, the strength and calm he exhibits that make me stronger and calmer, and the unabashed pride he takes in even the seemingly smallest of Alex’s achievements. Through the good and the bad and even the horrible times, Ed’s devotion to Alex and me has remained constant and has even become stronger with time, and for that, I am truly grateful.

I’ve heard it said that the best thing a father can do for his children is to love their mother. Alex witnesses every day how much his dad loves me through his thoughtfulness, respect, and affection. Moreover, Ed also expects Alex to treat me the same way, often reminding him, “Did you tell Mommy thank you? Well, tell her!”

In addition to mentoring Alex in how to treat others, Ed has also held Alex to high expectations. While my natural tendency would be to mollycoddle Alex because autism makes simple tasks difficult for him, Ed knows that he needs to learn how to do things on his own. For example, if Alex needs to wipe his face after eating, I grab a napkin and do it for him. Ed, on the other hand, patiently gives Alex directions, telling him to pick up the napkin and instructing where he needs to wipe his face and praising him for doing a good job. Similarly, he expects Alex to pick up after himself, whereas I would just come along behind him and put his things away for him. However, I won’t always be around to wipe Alex’s face or to pick up his belongings for him, so it’s a good thing Ed teaches him to be more independent.

Some of the most precious moments of my life are when I watch the two of them together without their being aware of my presence. Looking out the kitchen window, I have seen Ed patiently teaching Alex in the backyard how to throw or kick or catch a ball, encouraging him, no matter how many times Alex had to try before he could do it himself. When he finally mastered the skill, his face lit up, and he looked for Ed’s approval; his dad’s face matched his own, beaming with happiness and pride, as did mine watching from the window.

Sometimes I eavesdrop on their conversations and find the give and take amusing. Since speaking is so difficult for Alex, we hang on his every word, even when we have to ask him to repeat or clarify what he has said. I know that Ed savors his conversations with Alex because for many years we weren’t sure if he would ever be able to say more than a few words at a time. As they chat about baseball and jazz and the stock market and other interests they share, they thoroughly enjoy each other’s company and appreciate what the other has to say.

Because children never fully appreciate all their parents do for them until they have children of their own, Alex may never realize all of the things his dad does for him. From being Alex’s personal chauffeur to cutting up his food into bite-sized pieces to helping him get dressed and all the other tasks most twenty-four-year-old young men can do without their father’s help, Ed unfailing takes care of Alex and never complains.

By lovingly caring for Alex, Ed not only takes care of Alex’s daily needs, but he has also developed Alex’s faith in God. Knowing that he can always depend upon his earthly father, Alex has no doubt that he can completely trust his heavenly Father. In fact, Alex’s perception of God as being smart and funny probably comes from his attributing these qualities to his dad. However, he rates Ed as being in the high ninety percentages in these two areas, but he gives God 100% rankings in the intelligence and humor categories, noting that only God is perfect. Indeed, Alex is right about God’s wisdom because God knew exactly what kind of father Alex would need to guide him on the less traveled road of autism and gave him Ed. How blessed I am to be the wife and mother to two such extraordinary men!

“The father of godly children has cause for joy. What a pleasure to have children who are wise.” Proverbs 23:24

Sunday, June 12, 2016

Roll with the Changes

 
“Keep on rollin’; keep on rollin’. Oh, you got to learn to roll with the changes.”––"Roll with the Changes" by Kevin Cronin of REO Speedwagon

Commonly, people with autism have strong preferences for sameness and routines, which makes them resistant to change. For example, Alex insists on having a bath every night at exactly 6:00, and rarely can we persuade him to move this daily event to another time unless a much better alternative event convinces him to alter his sacred schedule. However, we have noted that over time, he has become increasingly flexible and less anxious about changes in his routine. Indeed, he is learning "to roll with the changes."

This week was my first week of summer vacation from teaching, which could have thrown Alex for a loop since he’s used to just being with his dad in the mornings while I’m at work. As it turned out, I was gone for parts of four mornings with two meetings and two breakfast outings with friends. This probably helped Alex ease into the transition of our summer schedule. Also, I try to help him deal with any anxiety by always leaving him a note telling him where I’ve gone and when I will return, which seems to comfort any worries he may have about why I’m gone and when I will be home. We’ll see how he responds next week when I’ll be home because my morning schedule isn’t as busy.

On Monday, Alex had his routine six-month appointment with the psychiatric nurse practitioner who prescribes his medications for anxiety. We were pleased to discover that she deemed the results of all of his blood tests “perfect” because they indicate that he is in excellent health and that the medications are not having any negative side effects. In addition, we were delighted that his behavior was fantastic during the appointment, calm and pleasant while he answered all of her questions. Of course, Alex was pleased that her schedule was running right on time so that he didn’t have to sit in the waiting room.

After we discussed his progress with her, she raised the issue I knew was coming––reducing his medications. As she pointed out, we can say that because things are going well, we shouldn’t rock the boat and should keep the medications the same. On the other hand, she noted, because things are going well, this may be a good time to reduce his medications. In a twist of roles, Ed, who is usually more receptive to change than I am, commented that we probably shouldn’t make any changes because Alex is doing well. Although I completely understand his logic, my mother’s instinct believes that we need to see if Alex can cope with less medication, and so with some trepidation we will try weaning him off one of his medications this summer and pray that we are doing the right thing.

On Tuesday, Alex met with his behavioral therapist for his regular weekly session, which went very well. Although she often doesn’t arrive at the scheduled time because of her busy schedule that requires travel through heavy traffic between two counties, she was ten minutes early on Tuesday. While that could have thrown Alex for a loop, he adjusted nicely to her early arrival and had a great session with her. Similarly, he showed flexibility on Wednesday when his peer companion who spends every Wednesday afternoon with him had to cancel at the last minute because she wasn’t feeling well. With two changes to his beloved routine in two days––one minor and one major––he still managed to be upbeat and calm.

On Thursday, Alex had his weekly session with his music therapist who is always punctual, faithfully arriving at his scheduled time every week. This week, he arrived early, and Alex again dealt with this change very well. In fact, his music therapist described the session as “fantastic” and noted that this was the second week in a row where Alex had done especially well with him. Of course, we were pleased by this positive report. In addition, he handled nicely a change in our dinner routine because Ed and my dad were attending a dinner reception for VU basketball season ticket holders, so Alex, my mom, and I went out to a restaurant for dinner. Alex seemed to enjoy himself thoroughly, and we remarked how much we enjoy taking him out to dinner because he behaves so well.

Friday threw Alex another curve ball, however, when his behavioral therapist had to cancel our planned recreational therapy session due to a family emergency. Even though Alex had been looking forward to going out to lunch at Subway with her and me, he didn’t seem terribly upset that our lunch plans had been altered. Later that evening, we discovered that our central air conditioning had broken, yet Alex continued his calm demeanor. As the temperatures rose into the 90’s yesterday, he never complained about the heat and only seemed amused to watch the thermometer rise in his upstairs bedroom, commenting that the it had never been that hot before in his entire life.

Because we have to wait until next week for the air conditioner to be repaired and because our bedrooms upstairs were too warm, even with windows opened and fans turned on, we decided to sleep in the basement, where it was much cooler. As we set up the pull-out bed in the couch for Ed and me and put Alex in basement bedroom twin bed, he seemed to view the experience as a grand adventure. Although I was concerned about how he would sleep in a different bed, he once again showed his flexibility, sleeping soundly in a new spot.

While Alex, like many people––including me––prefers the comfort of familiar routines, he is learning to accept and perhaps even embrace changes that occur, even when he doesn’t have time to prepare for them. This increased flexibility makes our lives easier because we don’t have to worry about his anxiety escalating. Moreover, he is realizing that life doesn’t always go as planned, and learning to roll with the changes will make his life more content. This week with all its unexpected alterations taught Alex valuable lessons and reminded us just how far he has come, and we continue to be thankful for the progress he has made.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it?” Isaiah 43:19

Sunday, June 5, 2016

Summer Safety

 
Although summer doesn’t officially begin until later this month (June 20th at 7:34 P.M. Central Daylight Time exactly, as Alex would add), for many of us summer starts as soon as the school year ends. After finishing up teaching my seventh grade English classes on Friday, essentially my summer has begun, other than having to spend tomorrow morning finishing up paperwork, submitting grades, and completing end-of-the-year tasks. Since Ed completed his spring semester last month, Alex has been eagerly awaiting my school year to end because summer officially arrives when both of us are home to spend time with Alex as a family.

In anticipation of this first week of our summer, Alex has been planning what he’d like to do with this special family time that we are blessed to have because we are teachers. Usually, he makes a specific list of places to go and things to do. This year, however, he seems more spontaneous and open to suggestions about summer activities. In fact, when asked what he’d like to do this summer, he responded, “Put more miles on Daddy’s car.” He doesn’t care where we go or what we do, just so long as we go lots of places and make that odometer move forward. That flexibility shows us progress on his part.

While summer brings good weather, vacations, family gatherings, and a less structured schedule––all of which most people treasure––summer also brings greater incidences of wandering in people with autism for all of those reasons. According to statistics provided by the National Autism Association, 49% of children and adults with autism wander away from places of safety and put themselves in dangerous situations, often fleeing toward bodies of water or swimming pools, busy roads, or train tracks. Every year many of these people with autism die from drowning or being hit by cars or trains.

While we are fortunate that Alex does not seem to be one of the wanderers, we still watch him like a hawk and have put safety precautions in place, such as having locks he cannot open and having him wear a medical identification bracelet in case he would be separated from us in a crowded place. Even though he can say his name, our names, his address and phone number, as well as my parents’ names, address, and phone number, his poor articulation skills and likelihood to panic if he were lost would make understanding him difficult. Hence, we have him wear the bracelet with key identifying information that he may not be able to tell in a crisis.

Why do people with autism wander and put themselves in danger? The National Autism Association offers potential reasons.

In addition, the National Autism Association offers many helpful tips to keep children with autism safe. [To view their webpage with safety guidelines, please click here.] Specifically, they focus upon prevention, education, and response. To prevent wandering they recommend the following:

––home safeguards, such as locks and fences to keep children from wandering from home;

––identification bracelets or tags;

––community awareness to alert those who might encounter the child and to teach how to interact with them;

––and hyper vigilance to make sure the child is closely supervised, especially in unfamiliar situations.

For education, the NAA recommends identifying triggers that may cause a child to elope, such as loud noises, and teaching them ways to cope with stresses other than running away. In addition they recommend providing swimming lessons to keep them safe around water and using social stories to teach them about safety.

If a person with autism wanders, the NAA recommends immediate response, including calling 911 right away and searching dangerous areas first, including water, railroad tracks, and traffic. Since people with autism are drawn to these places that pose imminent danger to them, family and first responders should always search these areas immediately. In addition, the NAA offers the following essential and helpful guidelines for law enforcement officers when dealing with a case of a person with autism who has wandered.


Although summertime usually brings relaxation for most families, for families with autism, summertime means increased vigilance to keep our children safe. Thanks to the efforts of the National Autism Association, helpful tips for keeping our kids from wandering and for dealing with the crisis of wandering remind us never to let down our guard when it comes to protecting them from harm. Hopefully, awareness of this crucial issue can prevent more tragedies from happening when people with autism wander. Of course, as parents, we also pray that God will always keep our children safe.

“The Lord is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety.” Psalm 18:2

Sunday, May 29, 2016

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

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