Give Thanks

During the month of November, as a tribute to Thanksgiving, some of my friends have been posting daily statements of gratitude on Facebook. Earlier in the month, I had considered participating in that worthwhile activity, but I knew myself well enough to realize that I would forget to post at some point. More likely I would write something in a hurry that was less thoughtful, such as “I’m thankful Hostess Twinkies and cupcakes are back on the market,” that would make me seem rather shallow or insincere. Even though I have not made daily Facebook proclamations of things I appreciate, I find myself daily—and not just during the month of November—giving thanks for many things, both large and small. Sometimes something will suddenly catch my attention, making me realize how an improvement has made my life easier, and I give a quick prayer of thanks. Other times, I recognize how ongoing blessings have touched my life, and I feel grateful. Of course, most of my prayers focus upon Alex, and when God answers them or redirects our path, I feel thankful. With that in mind, here are my thirty thankful thoughts.

1. As I was folding laundry the other day, I was thankful that Alex outgrew his need to chew his socks and shirt collars for sensory stimulation. Not only are his clothes free of holes, I no longer accidently step on yucky gooey socks he has left behind.

2. This week when I took Alex to get his hair cut professionally for the first time in nearly twenty years, I was thankful that he cooperated nicely and that the stylist treated him kindly. After three bad experiences having his hair cut at the barbershop when he was a little boy, I started cutting Alex’s hair myself because it was easier. However, now I’m glad that he’s eager and willing to allow someone else to cut his hair.

3. I’m glad Alex has recently rediscovered the joy of reading. The other night he asked me if he could stay up longer to read; of course, I said yes.

4. Since Alex is on a gluten-free and dairy-free diet, I’m thankful that more stores and restaurants carry foods that he can eat on his restricted diet. When we first started on the diet about fifteen years ago, choices were more limited, and reading labels carefully was necessary. Now foods are often clearly marked as gluten-free, making shopping easier.

5. I’m thankful that despite the restrictions of his diet, Alex has always been a good eater, willing to try new foods. As I’ve mentioned previously, the only foods he refuses to eat are mashed potatoes and popcorn, which makes him much less picky about foods than either of his parents. Luckily for Ed, Alex happily eats the carrots he doesn’t want.

6. Yes, I’m delighted that I can buy Hostess Twinkies and cupcakes again; when they come out with gluten-free and dairy-free versions that Alex can eat, I’ll be even more pleased. (Okay, that was shallow.)

7. As I was filling out annual paperwork for Alex’s disability services, I found myself frustrated in trying to decipher what information they wanted. However, I realized that we are blessed that he qualifies for services that make his life better and will be crucial for him in the future.

8. In reporting Alex’s limited personal financial assets for his paperwork, I recognized how fortunate we have been to have always had the financial resources to pay for whatever Alex needed over the years. Until he was legally an adult, we received no government benefits for his disability, and our insurance did not pay for any of his therapies. Nonetheless, we somehow always had enough money to pay for speech, visual, music, and biomedical therapies and anything else he needed.

9. Over the years, we have been blessed with various therapists who brought out the best in Alex and helped him overcome obstacles autism presented. We are truly grateful for Miss Susan, Miss Linda, Noel, Melissa, Seda, and Jennifer not only for the patience and kindness they have shown, but also for seeing potential in Alex and making him better.

10. I’m grateful that Alex, Ed, and I are healthy. Last week, as we were filling out medical forms for respite care, the case manager commented that Alex seemed to be quite healthy. Other than autism and the thrush infection we have been battling, Alex is remarkably healthy, as are Ed and I, which has made our lives much easier.

11. Finding doctors who are knowledgeable about autism isn’t easy, but we are thankful for the medical professionals who have helped us keep Alex healthy and happy. Dr. Trowbridge’s loving care until her retirement was truly a blessing, and now we appreciate Dr. Mike and Michelle for their expertise and for their compassion.

12. We are truly grateful for medications that help Alex deal with anxiety so that he can be happy and we can live peacefully, not constantly worried that he will erupt with aggression, as he did before he was on medication. This change has greatly impacted our lives in a positive way.

13. One of the small things: I’m grateful that gasoline prices no longer upset Alex. Trying to find routes around town that avoided gas stations was difficult, and hoping that he wouldn’t see the signs advertising the prices was often futile.

14. Every time I hear Alex flush the toilet, I’m thankful that he finally mastered toileting independently. While this may seem a small thing, for us, this is a major accomplishment that took ten years, many teaching approaches, and lots of laundry and carpet cleaning.

15. Every morning I wake up and thank God that Alex slept through the night peacefully. When he was younger, he often wandered the house in the middle of the night before we discovered the benefits of the supplement melatonin. More recently, he took up sleepwalking, which meant walking him back to bed. For the past several months, he stays put in his bed, which means peaceful nights for all three of us.

16. Whenever Alex asks for something nicely, I’m pleased that he’s learned the value of manners, specifically the importance of saying “please” and “thank you.”

17. Ed and I are thankful that our job schedules allow us to spend time with Alex to care for him. Because of our understanding supervisors, we have always been able for at least one of us to be home with him, which is, as Alex would say, “Good because it’s rare and special.” We know how blessed we are in this respect.

18. I’m grateful that my background as an English major and my experience as a teacher has helped me as I’ve researched methods to help Alex and as I’ve home schooled him. My training in college gave me critical reading skills and taught me how to assimilate new information quickly, which has been beneficial in doing autism research. Moreover, teaching a variety of students has given me many approaches to helping Alex learn.

19. Whenever I log onto my computer, I’m thankful for the Internet with its wealth of information on autism research and resources to consider for helping Alex.

20.  I’m also grateful that the Internet has allowed me to meet some amazing autism moms who have shared their lives and experiences. Besides the empathy these moms give freely, the wealth of knowledge they collectively share benefits all of our kids. I can’t imagine dealing with autism in isolation and know how fortunate I am to live in this modern age.

21. I’m thankful for mindless computer games like Candy Crush Saga and Bejeweled Blitz that prove to be great stress relievers to give me a break from being an autism mom. Okay, that was a little shallow, but it’s the truth.

22. This week when Alex asked if we could listen to Christmas music CD’s, I found myself thankful for the healing power of music. As I watched him smile, sway, and even dance (until he realized we were watching), I was pleased that music brings him so much joy and contentment.

23. The other night Ed commented about how nice it is to see Alex happy again. After months when Alex seemed to be only agitated or emotionally flat, we are delighted to see him enjoying life again. His laughter and smiles are a gift to us; when Alex is happy, so are we.

24. I’m thankful for Ed, who devotes himself to Alex as a father and also devotes himself to me and our marriage as we try to figure out what’s best for our family. I always know that he supports my decisions, but I appreciate that he is willing to listen as I think aloud about what choices we have. His unconditional love for Alex and me is one of the greatest blessings in my life.

25. I’m also thankful for our extended families for their love, support, and prayers through the years. While I would think that they would develop autism fatigue from listening to us, they continue to show caring and interest. God bless my beloved mother for patiently listening to my daily concerns, newest research, and multiple anecdotes, and for always having an opinion. Her strength has made me stronger.

26. My friends who have shown care and concern for Alex, Ed, and me through the years have helped more than they know. Their prayers and encouragement lifted me in the tough times, and they rejoiced with me during the good times. Moreover, when I was overwhelmed, they understood when I needed to talk or needed a hug. Again, Alex would say that they are “rare and special.”

27. I’m glad that I decided to write this list of blessings because right now I’m more aware than ever how fortunate I am. I’ve said that autism is the only difficult thing in my life, but perhaps it has been a blessing in disguise to make me see what a charmed life I’ve led. I know that dealing with the obstacles of autism has made me more patient and understanding, and I wouldn’t be the person I am had it not been for Alex.

28.  I’m thankful for Joel Osteen’s ministry that has developed my faith as I’ve listened to his Sunday sermons on television, read his daily devotions online, and read all of his inspirational books. His teachings help me on a daily basis as I remember that I’m “too blessed to be stressed,” “blessed by the favor of God,” and “a victor and not a victim.” His positive message of hope and God’s love inspire me daily to become a better person.

29. Every night when I listen to Alex’s bedtime prayers, I’m grateful that he has developed complete faith in God. He talks about God and Jesus as friends of his, and his belief in heaven and all that awaits gives him comfort. As his mother, I have comfort knowing that God loves Alex more than I do and will watch over him when I can’t.

30. With all of these blessings, I am most grateful for faith, hope, and love that have carried us along on this autism journey. While I don’t know what God has planned for us, I do know that He will give us the resources we need, as He always has. Most of all, I’m thankful God is always there. In the words of Alex’s favorite hymn, “In the Garden”: And He walks with me, and He talks with me, and He tells me I am His own; and the joy we share as we tarry there, none other has ever known.”

“Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” I Thessalonians 5:16-18

Theory of Mind and Literary Fiction

Last month a report that appeared in Science magazine entitled “Reading Literary Fiction Improves Theory of Mind” caught my attention as an autism mom and as an English teacher. [To read the summary of this article, click here.] Some researchers believe that people with autism lack Theory of Mind, or the ability to understand that other people have different thoughts and feelings than they do. Some have simplified this concept to the belief that people with autism lack empathy, or the ability to understand and share others’ emotions. Of course, those who cannot understand other people’s feelings and predict how they may react in situations are likely to have impaired social skills, which are also common in people with autism.

To assess Theory of Mind, researchers use the Sally-Ann test to see if children can understand how other people think. This test uses a story format with two girls, Sally and Ann. Sally has a ball, which she puts in a basket, and then she leaves the room. While she is gone, her tricky friend Ann removes the ball from the basket and places it in a box instead. Children are then asked to guess where Sally will look for the ball when she returns. Those who understand Sally’s thinking will choose the basket, knowing that’s where Sally thinks she left the ball. Those who lack Theory of Mind will choose the box because that’s where they know the ball has been placed. Typically children with autism believe that Sally knows the ball is in the box because they know it’s there; they don’t stop to consider that Sally is unaware that the ball has been moved while she was gone.

Since Alex has never been tested for Theory of Mind as far as I know, I was curious to see how he would do with the Sally-Ann test. When I gave him the test this morning, he immediately gave me the right answer, confidently telling me that Sally would look for her ball in the basket. Was this a lucky guess, or does Alex truly possess Theory of Mind? From recent progress we have seen in Alex, I believe that he has developed some understanding of the way other people think.

As the article in Science magazine points out, little research has been done to determine what helps develop Theory of Mind. With Alex, I think that behavioral therapy has helped him to understand better how his actions impact others. Through social stories and scripts his behavioral therapist has developed, Alex recites the rules for interacting with other people. For example, in his script “I Need to Keep My Hands to Myself,” he reminds himself that he needs to stop when he wants to touch someone or their belongings. The last line of this script explains the outcome when he follows the guidelines: “EVERYONE is happy when I keep my hands to myself.” In addition, his behavioral therapist discusses with Alex the potential consequences of impulsive behaviors, asking him what can happen if he would throw some something or grab someone. He knows that those are bad behaviors and can verbalize that he doesn’t want to break things or hurt people. He will sometimes add, “That would be sad.”

One of the recent changes that we have noticed is that Alex is showing interest in stories that have a plot. An avid reader, he has always preferred to read nonfiction works, especially reference books such as almanacs, encyclopedias, and dictionaries, to fiction works. Not surprisingly, his viewing preferences followed his reading choices, and he generally only watched game shows and news programs on television. After he lost interest in watching Disney cartoon movies, he never showed much interest in watching other kinds of movies. We were never sure whether this was a personal taste of his, or whether he couldn’t focus for an extended period of time or follow a story with a plot. Nonetheless, he has recently begun watching television shows and movies, enjoying them thoroughly. He has become a fan of two of my old favorites, The Waltons and Little House on the Prairie, following the struggles and triumphs of the Walton family in the 1930’s and 40’s and the Ingalls family of the late 1800’s. Even though their lives are quite different from his, Alex seems to show concern for the problems the characters face and acts pleased when they are able to overcome their struggles. Perhaps these shows have taught him how other people think and react in different situations.

According to the article in Science magazine, researchers discovered that those who read literary fiction did much better on Theory of Mind testing than those who read nonfiction, popular fiction, or nothing at all. Perhaps literary fiction allows the reader to identify with characters and then apply their understanding to people in real life. As an English teacher, I often take a psychological approach to literature, teaching my students to identify characters’ motives and to assess why characters act as they do in their circumstances. Although I wasn’t thinking about Theory of Mind specifically, I have always wanted my students to apply literature to their own lives to give real meaning to what they have read. As Common Core Standards become the educational guidelines for nearly all of the United States, their emphasis upon nonfiction could be potentially damaging for the development of students’ social skills. While nonfiction has its place in the real world, those of us who know the value of literary fiction will need to make certain students have the opportunity to read works that make them think about how humans deal with problems and interact with others so that they may develop their own interpersonal skills. With this in mind, I hope to engage Alex in more literary fiction, introducing him to some of my favorite characters so that he can not only enjoy interesting plots, but also learn from characters who can further develop his Theory of Mind and his social skills. As always, we try to keep Alex moving forward so that he can reach his full potential.

“All the believers were united in heart and mind. And they felt that what they owned was not their own, so they shared everything they had.” Acts 4:32

Who Are You?

"Is that Santa Claus?” Alex suddenly asked me the other evening. In response, I looked around to see what had brought on that question out of the blue, thinking he had seen a picture of Santa on television, in a book, or in an ad. Unable to spot the famous “jolly old soul” associated with Christmas, I looked at Alex and asked him where he’d seen Santa. He pointed to himself, or more specifically, he pointed earnestly to the bright red shirt he was wearing at the time. Knowing that he has trouble identifying and discriminating between people, even himself, I explained to him that not everyone who wears a red shirt is Santa, which satisfied his curiosity.

Similarly, Alex will see little boys on television, out in public, or in magazine pictures and ask us, “Is that Alex when he was little?” Aside from the difficulty Alex has always had with pronouns, particularly I, me, and you, which leads him to refer to himself in third person as “Alex” to avoid the confusion of I versus you, he seems to have trouble with his own identity. I’m not certain that Alex has a clear sense of self, even though we have shown him pictures and videos depicting the real Alex when he was little.

Perhaps part of Alex’s confusion is that he has trouble recognizing people’s faces. When we are out places, he is constantly searching crowds for familiar faces, but he often misidentifies them. If he sees an older man wearing a plaid shirt, he’ll ask, “Is that Grandpa?” Even though the man may look nothing like my dad, Alex has two primary factors that identify Grandpa: age and clothing style. Similarly, he’ll see an older woman with curly hair and thinking it’s my mom, ask, “Is that Nanny?” Again, he has selected two features that he associates with his grandmother and tries to make a connection when he sees women he thinks resemble her. Even when Ed would run into a store or restaurant to pick up something, as we waited in the car, Alex would look around for men with gray hair and moustaches like his dad and ask me, “Is that Daddy?”

Understandably, a quick glimpse of a person may confuse him into thinking he knows them, but Alex also has trouble when he sees people for longer amounts of time or when he looks at photographs of people he knows. For many years, he could not tell the difference between my sister’s two daughters in person or in pictures. Certainly, they look similar, but clear differences between them that we pointed out to him didn’t seem to register. He would invariably ask as he pointed to one of his cousins, “Is that Hannah or Marybeth?” Although I thought his confusion might be that he didn’t see them on a daily basis, he had the same trouble distinguishing me, whom he saw every day, from my sister. Like his cousins, my sister and I share family resemblance, but the contrasts in our hairstyles and eye color should have been enough for him to tell us apart. Nonetheless, Alex still couldn’t tell the difference when he would see pictures of us because he would point and ask, “Is that Mommy or Aunt Tammy?”

Interestingly, a friend of mine who also has a child on the autism spectrum commented this week that his child doesn’t recognize classmates and can’t identify them by name, even if they are quite familiar. I remember another autism mom telling about her son describing a guest speaker at his school by saying that she had “a pink face and black shoes.” This difficulty in remembering and recognizing facial features makes me wonder what the cause is. Does the lack of eye contact, often common in autism, make viewing faces difficult? Perhaps sensory overload, also common in autism, makes concentrating on the person’s appearance overwhelming. Is navigating social situations so stressful that the person can only focus on himself/herself and not really pay attention to the other person? Or, do some people with autism suffer from prosopagnosia, or “face blindness,” as actor Brad Pitt claimed in a recent interview that he does, in which they simply cannot remember faces of people they have met? In contrast to his father, who cannot remember people’s names when he encounters them in social situations, Alex remembers names but not faces.

Another possible explanation for Alex’s struggle to identify people is that he remembers numerical values better than descriptive details. Specifically, he would easily remember someone’s birthday or height or address, but he couldn’t tell what color hair or eyes that person had. For that reason, he always wants to see people’s driver’s licenses because they provide all the information he wants to know about them. We have repeatedly told him that only police officers have the right to ask people for their driver’s licenses, but he still wants to ask to see them anyway, hoping to gain the insight he needs to remember people he meets so that he can quantify them in his mind.

While people’s statistics make an impression on Alex, their appearance really doesn’t matter that much to him. I’ve noticed that he generalizes people’s looks based upon how they interact with him; in other words, he finds people attractive if they are kind to him. Seeing past what they look like on the outside, Alex is more impressed with how they are on the inside, and he has an innate ability to see through to people’s hearts. While he may not remember exactly what they look like, Alex remembers what’s most important, and his ability to see the good in people is a gift God has given him. Maybe in that regard he really is like Santa Claus, constantly looking for people to put on his “Nice” list. Until people start wearing name tags or surrendering their driver’s licenses to Alex, I’ll just keep reminding him who people are, just as I’ve done for his dad for years. It’s a good thing at least one of us in the family has a good memory for names and faces.

“As a face is reflected in water, so the heart reflects the real person.” Proverbs 27:19

Breakthrough

As I have explained in previous blog entries, Alex has been dealing with chronic candidiasis, or yeast overgrowth, in his digestive tract for many months, which is fairly common in children with autism. From the time he was a baby, we have treated him for yeast infections every few years, but they always responded to medication and were not as stubborn as this current round. In June 2012, a doctor diagnosed him with thrush and cheilitis, fungal infections in and around his mouth. Since then, we have repeatedly taken him to doctors, who have treated him with runs of antifungal medications and probiotics, hoping to rid his body of these pesky infections. In addition, we were blessed to find a family doctor last spring who emphasizes restoring Alex’s immune system through vitamins and nutrition so that his body can fight infection better.

As we have dealt with the yeast the past year and a half, we have noticed the same pattern repeat itself: Alex becomes irritable, impulsive, and obsessive as we then notice his saliva becomes milky and white spots appear in his mouth. Once he begins taking antifungals, not only do his physical symptoms disappear, but his behavior also improves significantly. His doctor pointed out that when Alex doesn’t feel well, he is just cranky, and his behavior reflects that irritability. While we certainly don’t want Alex to suffer from the thrush, we don’t want to suffer his wrath when he’s feeling ill, either. Consequently, we keep working with his doctor to get this fungal infection under control.

Last month we took him back to his family doctor again with the same symptoms: white spots, milky saliva, and increased agitation in his behavior. Once again, the doctor confirmed what we suspected—the thrush had returned despite two months of taking daily doses of the antifungal Diflucan. During the time Alex was on the medication, he was healthy and happy, and we had a terrific summer with him behaviorally. However, within a couple of weeks off the antifungal, we saw a decline in his behavior along with the telltale physical signs of thrush. This time his doctor wanted to try a new medication to see if it may be more effective long term and to prevent Alex’s body from becoming resistant to Diflucan. He prescribed the antifungal Itraconazole, which Alex takes twice a day, for six months if needed. Once again, we hoped and prayed for healing with this new medication.

Within a few days, we saw improvements in Alex’s mouth and behavior without any negative side effects from the medication, which was a blessing. In fact, last week, which marked three weeks of being on Itraconazole, was one of the best weeks we have ever had with Alex. Moreover, he was the best he has been in his life in terms of his behavior, mood, interaction with others, and speech. One improvement is that he has been more independent and focused, entertaining himself by reading and watching television instead of relying on Ed or me constantly. Not only has he been cooperative and pleasant, but his language skills, which have always been his greatest weakness, have also shown huge gains in a remarkably short time. Instead of speaking in short phrases or sentences with syntax, or word order, problems, he has been speaking clearly in complete, often complex sentences. Also, we have been working with him for many months to talk loudly enough to be heard instead of mumbling, and he has recently been speaking with an appropriate volume so that we don’t need for him to repeat himself. With this breakthrough in speech, we now have a much better idea of what he is thinking. For example, the other night, he asked me, “As people get older, does their metabolism slow down?” After all the years he has struggled with articulation (speaking clearly), volume, syntax, and generating speech, despite years of speech therapy, he finally has found his voice, thank God. Perhaps now that he can express himself, he feels less anxiety and frustration, which has helped his behavior. Perhaps now that he’s feeling better, he feels less need to engage in impulsive and compulsive behaviors. I truly believe that we are finally seeing answers to our incessant prayers for healing.

Interestingly, this week we received test results that we had run a few weeks ago before we began seeing the huge improvements. I had asked Alex’s doctor if we could run an organic acids test with yeast culture and sensitivity through Great Plains Laboratory to see what his urine and stool indicated as far as yeast and metabolism. We had not run one of these tests for about ten years, and we were curious to see what the tests might indicate. Although Alex’s doctor was not familiar with the test, he agreed that this test would be worthwhile after I showed him previous test results. Not surprisingly, Alex continues to show yeast overgrowth in his system as well as some metabolic issues that previous test results have indicated. Once again, his doctor and I will discuss what steps need to be taken to improve his health, but the current antifungal definitely seems to be a step in the right direction.

From our experience, I encourage other parents of children with autism to consider investigating the organic acids test to see if their children might benefit from the biomedical interventions the test recommends if results are abnormal. Dr. William Shaw of the Great Plains Laboratory has a special interest in autism and has done extensive research trying to find ways to help children with autism. His website [which can be accessed by clicking here] has considerable information and resources that offer help and hope. The remarkable improvements we have seen in Alex after having gone through terrible experiences with aggression indicate that proper medical treatment can make huge changes in the life of the child with autism. We kept hoping and praying for Alex to get better, and now we see that he can be better than we ever even envisioned. Through the grace of God and the help of doctors, Alex is getting better, and as parents, we are truly grateful.

“O Lord my God, I cried to You for help, and You restored my health.” Psalm 30:2