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

Trick or Treat and Autism

This month, several articles have appeared online suggesting ways for parents to help their children with autism celebrate Halloween this week. Since Halloween and its accompanying costumes, candy, and creepiness can be overwhelming to any child--let alone those with sensory and and/or anxiety issues associated with autism--these tips can provide useful guidelines. As I read various suggestions, I found myself nodding my head in agreement at times, but at other times, I was scratching my head in disbelief at some of the stupid comments in these lists. Taking the best of these ideas along with our positive experiences of trick or treating with Alex, I offer my own version of Halloween Helpful Hints.

1. Costume Comfort: Many articles include this suggestion, which is a good one. Sensory issues may make wearing certain costumes, makeup, or masks difficult for children with autism. Here in Northwest Indiana, all kids have to consider the cold factor, which means being able to wear a coat or several layers of warm clothing under a costume to keep from freezing while trick or treating. For that reason, I usually incorporated sweatshirts and sweatpants into Alex’s Halloween costumes when he was younger.  Since I made his costumes for him, I involved him in their construction, discussing ideas with him, picking out the fabric together, and trying on the costume as I sewed it. Also, we knew he would never wear a mask, so that was never a part of his disguise.  Consequently, he was pleased with his costumes and eager to wear them. One article from a national autism organization pointed out the obvious: “If your child does not like their costume, don’t make them wear it.” Aside from the pronoun agreement error [their should be his/her—which bothers me as an English teacher!], this tip should be true for ALL children, not just those with autism.

2.  Practice: Several articles offered ideas of how to prepare children for trick or treating by doing trial runs at the houses of friends or relatives prior to Halloween. The process of ringing the doorbell along with saying “Trick or Treat” and “Thank you” seems like a simple one, but for kids with autism, this can be difficult. Some articles suggested social stories that include the steps for trick or treating to prepare children for this event. With Alex, we used to go over a list of rules before Halloween. We knew he was paying attention, because I could hear him softly chant: “Don’t go into people’s houses, don’t ask their weights or ages, say ‘Thank you’” as we walked along our trick or treat route.

3.  Vigilance: Since almost half of the children with autism have a tendency to wander away from places of safety, parents need to keep their children close at hand when trick or treating. With the additional activity and darkness, children could easily wander away and get hit by cars. Several articles mentioned the importance of carrying flashlights to help guide the way, keep an eye on the child, and reassure the child in the darkness. In addition to keeping the child safe, parents also need to make sure the child is calm. With all the activity, children with autism may become overwhelmed and melt down. As one article stated the seemingly obvious: “Know your child’s limits and do only what he or she can handle.” While this should be a guideline for autism parents (or any parents, for that matter) every day, this tip proves especially true for holidays. When Alex was younger, I kept him right by my side during trick or treating, which once led to my getting yelled at by a grouchy old man who informed me that I was too old to be trick or treating. (My lack of costume and trick or treat bag should have been a clue that I was a parent.) Also, I continually monitored Alex’s mood, asking him if he wanted to go to more houses or go home. Because he had the choice, he remained calm. When he was tired and indicated he was done, I immediately took him home. Common sense prevails.

4. Communication: Although autism is more prevalent, many people do not recognize children with autism nor understand their behaviors and may mistake their inability to communicate as rudeness. Although Alex could say “Trick or Treat” and “Thank you” (often with reminders), he wasn’t prepared for unscripted questions friendly people may ask him. Sometimes, I would cue him with an answer, and other times I would explain that he has autism, which makes speaking difficult for him. One article recommended placing an autism awareness sticker on the child’s trick or treat container and printing cards to hand to people with facts about autism. This struck me as a bit overboard, but I liked the idea of printing cards for nonverbal children that explained that they could not speak, so this card was a way of saying “Trick or treat” and “Happy Halloween.”

5. Alternatives: While trick or treating may be overwhelming for children with autism, some organizations provide Halloween parties for children with special needs that allow them to enjoy the holiday in a more structured setting. Another tip offered in articles is to have the child pass out candy instead of going trick or treating. After Alex was too old to go trick or treating, which he always enjoyed, we have had him engaged in passing out the candy. Most of the time, he prefers to watch us actually give kids the candy, but he likes seeing the little kids dressed up in costumes and listening to “the little voices” they have. With his mathematical mind, he keeps track of how many kids come to our door, which comes in quite handy. Yesterday, as I was buying Halloween candy, I turned to him to find out how much I needed to buy. Since he remembered how many trick or treaters we had last year, he was able to calculate how many bags of candy we should get.

Although most children eagerly anticipate Halloween as a favorite time of the year, for children with autism, this holiday can be overwhelming. By preparing them ahead of time, anticipating their needs, and being willing to change plans, parents can help their children with autism enjoy the occasion on their own terms. For more helpful suggestions regarding children with autism and Halloween, I recommend “Your Tips for a Safe, Comfortable, and Enjoyable Halloween” on the Autism Society’s website. [To access this link, click here.] This article is a compilation of ideas from parents of children with autism and offers truly useful suggestions. As for Alex, although I no longer need to make him a costume, he still insists that we decorate our pumpkin that we picked from the pumpkin patch last weekend. Truthfully, I’ll be glad when he tires of that tradition, since I’m the one who has the task of scooping out pumpkin innards. Happy Halloween to all!

“Yes, the Lord pours down His blessings. Our land will yield its bountiful harvest.” Psalm 85:12

Plan B

About a year and a half ago, we began searching for a day program for Alex so that he could develop more skills and independence as well as spend time with peers. After visiting two programs, we immediately knew which one we thought was ideal for him. The first day program, housed in a beautiful facility, offered a variety of interesting and entertaining activities we knew he would find engaging. Moreover, everyone—staff and clients—seemed to be enjoying themselves, and we thought that Alex would be happy there, too, because he really liked visiting there. By contrast, the second program did not seem to offer well-planned activities, and the facility just had a sad feel about it, making us feel sorry for the clients. During the brief time we visited there, Alex kept asking when we were leaving and when we could go home. Clearly, this was not where we wanted him to be. Recently, the agency that ran that day program had its group homes closed down by the state for violations. Sadly, their residents had to be relocated to new groups homes after many years, often far away from their families, or their families, some with elderly parents, took them home to care for them. Interestingly, Alex’s intuition was correct about not wanting to stay there even though they were quite eager to have him enroll in their program.

After deciding upon the day program we believed was best for Alex, we filled out all the needed paperwork to enroll him. At first we were told there was an opening for him, and then that invitation was revoked because of concerns about his history of aggression. Even though medication was keeping his anxiety and agitation under control, they wanted him to do his trial evaluation under one-on-one supervision with their staff. Moreover, they wanted to wait until a major construction project that would more than double their facility in size was completed this fall. Although we were disappointed that we would have to wait, we understood their reasons and thought that he would be given a chance this fall once the construction was completed. After the addition to the facility was finished, Alex’s case manager and behavioral therapist began inquiring about when he might be able to start his trial evaluation there, and they were given vague answers about his being on a waiting list. Again, they cited his past aggressive behavior, despite his behavioral therapist and case manager noting the improvements he has made in the past several months with medication and therapy. While we certainly understand their concerns for the safety of their staff and other clients, we are disappointed that his progress does not seem to be a factor in consideration. In addition, their agency has taken some of the clients whose agency was closed by the state. Although those new clients do have a greater need, I suspect this also pushes Alex farther back on the waiting list.

Since our original plan that Alex would be enrolled in our chosen day program this fall does not look imminent, we decided that we needed to come up with an alternative plan that will keep Alex moving forward in his progress, a “Plan B.” First, we asked his behavioral therapist to have her counseling agency complete a new behavioral assessment of Alex based upon his more recent behaviors since the first assessment was done eighteen months ago. She agreed that with the progress he has made a new evaluation would provide a better picture of Alex’s current behavior for anyone who works with him. In addition, we asked his case manager if we could come up with a new budget for his disability funds. Since he is not currently using funds allocated for a day program, we would like to use them toward more behavioral therapy and perhaps other supportive therapies, such as music therapy.

After finding out that this change of plans would be acceptable for his budget, his behavioral therapist and I began brainstorming ideas of ways we could use additional therapy time. Thankfully, his behavioral therapist Jennifer is wonderful with Alex and is available, willing, and eager to work with him during an additional session each week. Even though she has only been working with him for a few months (after the first therapist moved out of state and the second one was promoted to a new position), we feel a comfort level with her as though we have known her for years. As she and I discussed possible activities for Alex’s second session each week, we agreed that increasing his social skills by doing fun activities would be best. These Friday sessions that will begin in November will include me so that Alex gets used to not having either of our undivided attention. We have discussed playing games and going on outings to the library, restaurants, the bowling alley, and stores—all of which we hope will improve Alex’s social skills and his ability to function well in different settings.

Not only are we grateful that Jennifer is able to do additional work with Alex, but we are also pleased that she has taken on this new responsibility with genuine enthusiasm.  Moreover, Alex adores her and looks forward to seeing her every week; he is delighted that he’ll now get to see her twice a week. What a blessing to have her in our lives! While Alex will be developing his skills, we will continue to hope that eventually he will be accepted into our chosen day program. As I told his case manager when I proposed the changes to her, we hope that the increased therapy time will ensure that when the day program is ready for Alex, he will be ready for the day program. While I’m not always patient about waiting, I know that God has a perfect timing, and I’m really looking forward to the fun Fridays Alex, Jennifer, and I are going to enjoy in the meantime.

"Trust in the Lord with all your heart; do not depend on your own understanding.  Seek His will in all you do, and He will show you which path to take." Proverbs 3:5-6

Lab Tests

As I explained in my last blog post, Alex has been dealing with a chronic case of thrush for over a year. Despite several trips to doctors and urgent care clinics along with a variety of antifungals, we keep trying to get rid of this stubborn candida in his mouth. Last weekend, his doctor decided to try another antifungal medication to see if it may be more effective. In addition, he has concerns that the thrush will become resistant to the one medication we know works, Diflucan. We started the new medication this week, and so far, Alex seems to be responding without any negative side effects. Hopefully, this will be the one that finally knocks out the fungus for good. However, this may be a slow process, as his doctor gave enough refills for six months of this medication.

Since antifungals can affect liver function, Alex’s doctor wanted a blood test run to make sure the medication was not causing any damage. Last Sunday, we took him to the laboratory where we have his routine blood tests done because we never have to wait long, and their staff are friendly and pleasant. As they rapidly processed Alex’s paperwork, he happily watched a football game on the big screen television in the waiting room. Within minutes, the lab technician came to get us to draw Alex’s blood, and we recognized her because she has drawn his blood for previous tests.

Before we began, we reminded her that Alex does very well with blood tests; in fact, they never seem to bother him at all. As she placed the tourniquet around his upper arm before drawing the blood, she told him that she didn’t like tourniquets “because they hurt.” I’m not sure why she put such a negative spin on this step necessary to the blood test, so I quickly told Alex that they never bothered him in the past. Before she stuck the needle in his vein, she then told him that it would “just hurt for a minute.” Alex looked at me, and I reassured him that it would only be a little stick for a second, which was true and less upsetting. As always, he did great while his blood was being drawn, never flinching or complaining. After she was finished, she placed a bandage on his arm and instructed us to keep the bandage on for about twenty minutes. I told her that Alex never bled more than a pinprick after blood tests, and she replied, “Some people tell me that, too, and then they look to see blood running down their arm.” As my mom would say, this lady was a real “crepe hanger,” finding all the worst-case scenarios in a situation. Fortunately, I know Alex much better than the technician does, and he handled the test beautifully despite her frightening comments. Thankfully, blood did not run down his arm, and he seemed unfazed by the lab technician’s warnings.

In addition to his blood tests, I had asked Alex’s doctor about running a test his childhood doctor had done several times in the past, the Great Plains Laboratory organic acids test with yeast sensitivity and culture. This test assesses intestinal yeast and bacteria and determines which medications and supplements best treat the condition. Although Alex’s doctor was not familiar with the test, after showing him previous test results, he agreed that this test would be helpful in treating Alex’s chronic yeast overgrowth. With his authorization, I ordered the test kit, which arrived on Friday. Since we had not done one of these tests for several years, I had to refresh my memory as to how the urine and stool collection were to be done to make certain the results were accurate. For example, certain fruits, namely apples, grapes, raisins, pears, and cranberries, and their juices must be avoided for twenty-four hours prior to the test. The samples must also not come in contact with water; therefore, the “nun’s cap” specimen collector I purchased several years ago for tests makes the process easier since it fits nicely in the toilet. With all the paperwork completed and instructions clear, I was ready to play amateur lab technician with the single rubber glove they sent me. (Why they don’t send two gloves has always been a mystery to me.) Now, the rest was up to Alex to produce the samples.

Just as he is a trouper with blood tests, Alex is amazingly cooperative about urine and stool tests. In fact, he gets excited about these tests, asking when we’re doing them and when we’ll get the results. I suspect that he likes the numerical statistics that come with lab reports, but he also tells me that he likes the tests “because they’re rare and special.” His enthusiasm helps me deal with the gross factor of collecting the samples, especially the stool sample that needs to be made into a slurry before sending it to the lab. I’ve discovered the old saying to be true: to paraphrase, the more you stir it; the more it stinks. Nonetheless, Alex produced a good stool sample yesterday, and I managed to produce the slurry without gagging. The second part of the test required collecting his first morning urine, and this morning, he came through with flying colors, giving way more than was needed. Once again, I collected his sample, placed it in the test kit container, and was thankful we were able to complete this test easily. Tomorrow, we’ll have it shipped to the lab and await the results and hope to gain insight into what is lurking in Alex’s gut. While I wish that Alex didn’t have to deal with the yeast overgrowth that has chronically plagued his digestive tract, I’m thankful that we have a doctor who will aggressively pursue curing him and that Alex handles lab tests fearlessly and even happily. And now, as we so often do with Alex, we just wait to see what the tests reveal.

“Search me, O God, and know my heart; test me and know my anxious thoughts.” Psalm 139:23

Divinely Designated Doctor

Yesterday we took Alex to the doctor for a follow-up appointment after two months of taking the antifungal medication Diflucan for thrush, yeast overgrowth in his mouth. As I mentioned in a recent blog entry, Alex has made great progress over the past couple of months. We believe that healing has been the main reason he has improved in many ways, including being calmer, showing mental sharpness, and speaking more clearly. Although we had hoped that two months of Diflucan would finally clear up the thrush that has plagued him for over a year, we saw signs of decline this past week since he finished taking the medicine last weekend. Instead of being content and easygoing, Alex has been irritable and obsessive. Knowing that we were taking him to the doctor, we bided our time this week and gave in to Alex’s requests to take two baths per day, which seemed to calm his nerves—and ours.

Before we left for his appointment, I asked Alex if I could look at his mouth, and he was cooperative about letting me take a peek. The inflammation, milky saliva, and telltale white spots explained his behavior this week: he has thrush again. Knowing that he was likely to be impatient if he had to wait long at the doctor’s office, I called the receptionist to see how the schedule was running. She told me that things were running on time, but a couple of minutes later, the nurse called to tell me that the doctor was about fifteen minutes behind schedule and suggested that we plan to arrive a little later so that Alex wouldn’t have to wait, which we really appreciated. Fortunately, his nurse understands Alex quite well, always turning the blood pressure/pulse monitor so that he can see it as she takes his vitals and allowing him to read her notes on his chart, knowing his interest in medicine and mathematics.

When we arrived, we were immediately taken back to an examination room, and a young man took Alex’s vitals, telling us that the nurse had reminded him to let Alex see the blood pressure numbers. After he wrote down the information, he turned the chart around for Alex to see, but as I told him, Alex had read the chart as he was writing because he can read upside down, which seemed to impress him. Thankfully, we didn’t have to wait long to see the doctor, who also understands Alex very well and interacts with him in a way that is compassionate yet never condescending. As he held out his hand to shake Alex’s hand (and as usual, Alex offered his left hand instead of his right hand), Alex showed what his behavioral therapist has taught him by shaking hands and saying, “Nice to see you,” which delighted the doctor, Ed, and me.

He then addressed Alex, commenting that he was reading a research article that made him think of Alex, and he began asking me about what amino acids Alex has taken. We discussed taurine and theanine, both of which Alex had taken in the past with some positive results, and I explained that Alex had negative side effects with tryptophan, which made him hyperactive. I also shared with him, since he is also an emergency room physician, the article I mentioned in my last blog entry about trauma surgeons using a combination of vitamin D, omega fatty acids, progesterone, and glutamine for patients with brain trauma. Since he placed Alex on three of those four supplements, he found that research interesting and recommended that we try glutamine, which he thought would be helpful. As we discussed the research we had read, he commented that he believes that divine guidance leads him to what he needs to know, and I totally agreed with him. In addition to his kindness toward Alex and us, our shared faith gives me complete confidence in Alex’s doctor.

After Ed and I explained the improvements we saw while Alex was on antifungals along with the decline we have seen this week post-antifungals, the doctor agreed that the thrush had likely returned, and his examination confirmed our suspicions. We discussed the problems of keeping him on Diflucan, which can lose its effectiveness over time, and the need to check Alex’s liver function, which the medication can affect. After consulting his electronic guide to medications, the doctor suggested another antifungal Alex had not tried, and he prescribed this medication daily for another two months. In addition, he gave us lab orders to have Alex’s liver function assessed through a blood test, which we will do this afternoon. Also, I asked him about running an organic acids test with yeast sensitivity and culture, something we had done with Alex in the past. While he was not familiar with the test, he listened intently as I explained the benefits of this urine and stool test that diagnoses metabolic issues and yeast overgrowth and additionally makes treatment recommendations. Apparently, my summary of the test was convincing, as he enthusiastically agreed that we should run this test on Alex. Consequently, I will soon be playing amateur lab technician, collecting Alex’s first morning urine sample and making a “slurry” of his stool to send to Great Plains Laboratory. Hopefully, this test, along with his blood test, will provide us with some guidance as to how to treat this aggressive yeast overgrowth.

Even though dealing with Alex's having thrush for many months has been frustrating and worrisome, we are very grateful to have a doctor who understands our concerns, works cooperatively with us in trying to help Alex, and interacts with Alex in such a positive way. For example, the last time Alex saw him, he kept staring at the doctor’s watch.  Without hesitation, he took off his watch, and with total trust, handed it to Alex to examine. Alex took a quick glance, gave the watch back to the doctor, and told him, “The date is wrong,” which made the doctor laugh, change the date, and comment on how smart Alex is. Just as Alex’s doctor believes that divine intervention leads him to the research he needs to help his patients, we believe that divine intervention has led us to him: God knew the doctor we needed to take care of Alex. Despite our concerns that the thrush stubbornly keeps coming back (or perhaps never really goes away), Alex’s doctor assures us that he’ll keep working until Alex is finally well. With a doctor who inspires confidence like that and who relies upon God's guidance, we know that healing is coming, and we anticipate that blessing eagerly.

“For since the world began, no ear has heard and no eye has seen a God like You, who works for those who wait for Him!” Isaiah 64:4

Alternative Medicine

Parents sometimes comment that life would be easier if their children came with instruction manuals. Since children with autism often exhibit puzzling behaviors, a definitive guide would come in especially handy for dealing with them. Even with the myriad of books I’ve read about autism and how to address behaviors, I’ve discovered the most useful research to be found in the medical field, especially that which focuses upon alternative medicine, such as diet and nutrition. This week, I ran across some interesting medical stories in the media that piqued my curiosity as I considered how new research may help children with autism.

The first report, “Anxiety in Your Head Could Come from Your Gut,” [To read this news account, click here.] caught my eye because both Alex and I deal with panic attacks. While he takes Zoloft to address his anxiety, I use cognitive therapy techniques I learned several years ago in a stress management workshop to help me calm my nerves. Alex has also benefitted from cognitive therapy calming approaches his behavioral therapist has taught him, learning to take control of his anxiety through breathing techniques and distracting himself from the obsessive thoughts that upset him. I found this article especially intriguing because it profiled children with ADHD, anxiety, and/or OCD whose symptoms improved once they were treated for digestive issues using probiotics. As the article notes, “In one 2010 study at McMaster University in Canada, published in the journal Communicative and Integrative Biology, scientists found a link between intestinal microbiota and anxiety-like behavior.” The article goes on to state: “And now, scientists think there may be a link between what's in your gut and what's in your head, suggesting that bacteria may play a role in disorders such as anxiety, schizophrenia and autism.” Since Alex has often struggled with candida, or yeast overgrowth in his digestive system, his doctor has recommended treating him with probiotics, or good bacteria, to fight the overgrowth of harmful bacteria in his system. When he has yeast flares, his behavior declines, making him obsessive, agitated, and even aggressive. However, by treating his gut with antifungals and probiotics, we see significant improvement in his behavior, likely because his digestive system also improves with this intervention. According to this article, the encouraging news for those whose digestive issues impact their behavior negatively is that the National Institute of Mental Health “is encouraging studies to address the mechanisms of gut bacteria and their association with mental health functions.” Perhaps if more children with autism were treated with probiotics, their behavior might improve, as well.

A second article I found quite interesting explained the use of nutritional supplements to treat traumatic brain injuries, such as those found in automobile accidents. [To read this article, click here.] Dr. Leslie Matthews, a trauma surgeon at Grady Memorial Hospital in Georgia, treats patients with the following combination of supplements:  vitamin D and omega three fatty acids, two powerful natural anti-inflammatories to reduce brain swelling, along with the hormone progesterone and the amino acid glutamine to protect damaged nerve cells. Because of the amazing success they have found with this natural intervention, the article notes, “Every brain trauma patient at Grady receives the same supplements.” As Dr. Matthews explains, "So basically you're giving the body what it needs to heal itself. The body, the way God designed the body, is to heal itself if you give it the right nutrients." Not only was I impressed with Dr. Matthews’ use of alternative treatment for life-threatening injuries, but I also loved that he gave God credit for the marvelous design of the human body. Moreover, his approach is similar to that which Alex’s doctor is using to heal his nervous system and to reduce inflammation by having him take high doses of vitamin D, the omega six supplement (because Alex does not respond well to omega three supplements) evening primrose oil, and progesterone cream. While we have not tried the amino acid glutamine, I will be asking Alex’s doctor for his opinion about adding that to his supplement regimen when we see him next week. Like Dr. Matthews, I believe that God designed the body to heal itself with proper nutrition. I’m just thankful for doctors like her and Alex’s doctor who support an alternative and natural approach to healing.

While the first two articles gave me hope that doctors are beginning to have innovative ways to heal conditions associated with the nervous system, such as autism, a third article disappointed me in the medical approach used for a teenager with autism. In “Surgery Reduces Autism-related Screaming,” a reporter detailed the case of a teenager with autism who “screamed louder than a lawn mower more than 1000 times a day.” [To read this article, click here.] To address this problem, doctors performed surgery on his vocal cords to limit his volume. While I can certainly understand how stressful having a child who screams all day could be, like many who commented on this article, I have issues with performing this surgery, which some described as “mutilation.” I have to think that these parents were driven to their breaking point to consider such an extreme solution to the problem, and I wish someone had thought to find out why this poor child was screaming constantly. Was he in pain, and screaming was the only way to communicate his suffering? Perhaps if his doctors had treated him with probiotics, they might have addressed gut issues, or if they had given him vitamin D to decrease inflammation or progesterone to heal his damaged nerves, they may have healed his body so that he didn’t need the surgery on his vocal cords. While I don’t know the cause of his constant screaming, I just feel bad that he may now be suffering in silence and pray that he is not.

Yesterday, on a rare eighty-degree day in late September here in Northwest Indiana, Ed, Alex, and I went to the Indiana Dunes State Park, enjoying the late afternoon sun reflect on Lake Michigan as we sat on a bench in the sand. In that peaceful setting, I thanked God for the healing we have seen in Alex over the past several months that allowed us to enjoy that moment as a family. In that beautiful setting, I watched Alex smile and wondered what he was thinking, but I was filled with joy that he was happy. As I glanced at the sun dipping lower in the sky, I began to hear Alex saying something softly, and I leaned my head closer toward him so that I could hear him better. In a barely audible voice, he was singing, which he rarely does, a Kenny Chesney country song that is one of his favorites: “When the sun goes down, we’ll be groovin’. When the sun goes down, we’ll be feelin’ all right. When the sun sinks down over the water, everything gets hotter when the sun goes down.” It doesn’t get much better than that.

“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

The Return of Old Friends

As I described in my blog entry last month titled “The Return of Good Year Alex” (August 25, 2013), we have been delighted to see recent improvements in Alex’s behavior, health, and speech. In fact, I told a friend the other day that in many ways Alex is probably the best he’s ever been--praise God. After a year in which his senses were dulled by medication to keep his anxiety under control, he has become alert, enabling him to enjoy life. As part of this awakening, he has returned to familiar pastimes that make him happy. Perhaps because he couldn’t concentrate, he had basically abandoned reading and watching television, which had been favorite activities of his for many years. However, he once again has books stacked around his bed so that he can read before bedtime and as soon as he wakes up in the morning. He has also started watching television shows that were favorites when he was younger, and as he did when he was small, he refers to the people on the shows as if they were good friends of his. Not only do we welcome back our contented son, but we are also happy to have his old friends from television entertaining him.

One of Alex’s favorite shows when he was little was Thomas and Friends, the cartoon series about Thomas the Tank Engine. Apparently, this is a favorite of many children who have autism. Perhaps they like this show because they can easily distinguish the different trains through their distinctive colors and voices, or maybe they appreciate that the narrator tells the emotions that the trains are feeling so that the children don’t have to figure out what the faces are conveying. To be honest, I never paid much attention to the show until Alex started watching it again a few weeks ago, after many years of not watching it. While it may seem odd for a 21-year-old to enjoy this cartoon, I have discovered by watching it lately with Alex that it is a really good show with catchy music and good lessons for life, such as being patient and kind and hard working. My only complaint is that I have the theme song stuck in my head and hum it incessantly throughout the day.

Like many children with autism, Alex has been a fan of Wheel of Fortune from an early age. Between the spinning wheel and giant letter board, he was mesmerized by the game. When he was a little older, he also found Jeopardy equally engaging, and their all-time champion Ken Jennings became one of his personal heroes. Since game shows have been special favorites of his, he could spend hours watching the Game Show Network when he was in his teens. However, he lost interest in game shows over time, and he no longer seemed to want anything to do with his old friends Pat Sajak, Vanna White, or Alex Trebek. Lately, though, he has rediscovered the fun of playing along with these old favorite games on television, and we’re pleased to see his mental sharpness return as he solves the puzzles and blurts out the clues.

Although an unusual choice for a child’s favorite television show, Alex found the PBS political news show The McLaughlin Group, a weekly roundtable discussion of current events, completely engaging. Identifying himself as a political conservative, Alex aligned himself with fellow conservative Pat Buchanan and jeered political liberal Eleanor Clift, whom he deemed “annoying.” After not watching this show for several years, Alex has rediscovered how much he enjoys the debate between Pat and Eleanor, grinning as they present their points passionately. Each week, he eagerly anticipates Saturday evening so that he can watch the lively conversation among the five participants, which often makes him laugh as they interrupt each other, trying to make themselves be heard.

Probably the most surprising recent return has been Alex’s old pal Pinocchio. When he was about four years old, Alex watched the Disney video of Pinocchio hundreds of times, often several times in a row. He drove us particularly crazy rewinding the videotape repeatedly when the scene of the whale swallowing Pinocchio’s father came on; apparently the bubbles that rose to the surface of the water fascinated him. Not surprisingly, Alex eventually became tired of this video and seemed to outgrow watching (and re-watching) all of his Disney videos. The other day, he suddenly asked to watch Pinocchio, which meant that I needed to head to the basement, where they’re stored, and try to remember if we even still have a working VHS player. Fortunately, I was able to find his beloved old video and a video tape player that works, and he happily watched the entire movie, never once stopping to rewind the tape. Since neither of us had seen Pinocchio for more than fifteen years, watching it seemed like something we were doing for the first time. After what we’ve been through the past several months, I realized that in some ways Alex is Pinocchio. He has come from the wooden puppet that made foolish choices to “a real boy” with a second chance to enjoy life. As his Jiminy Cricket, trying to guide him on the right path as the voice of his conscience, I couldn’t be more pleased to see the new, improved Alex spending time with “old friends” on television who not only make him happy but also influence him in a positive way.

“I remember the days of old. I ponder all Your great works and think about what You have done.” Psalm 143:5

Lessons from Special Needs Parents

This week I was surprised and pleased to receive a letter in the mail from an old friend and former colleague with whom I hadn’t been in contact for several years. Although he had been my teacher in seventh grade and later worked with me for many years, we lost touch after he retired from teaching and moved to another city to be near his children and grandchildren. Apparently, he decided to write to me after seeing the article about our family in the November 2012 issue of Woman’s Day magazine. [To read this article online, click here.] As the parent of a special needs adult himself, he shared that his son, who has cerebral palsy and is wheelchair bound, is currently living in a group home with three other men. He also told me that one of his son’s roommates is a young man with autism who is a Civil War buff and enjoys participating in Civil War reenactments. I think he wanted to prepare me for the eventual changes ahead when Alex will be away from home in supported living and to let me know that Alex will be all right, just as his son and his roommate with autism are all right.

His letter made me think back to when I first started teaching, a few years before I got married and a few more years before I had Alex. At the time, I was fortunate enough to work with him and with another parent of a special needs child; both of them were parenting teenagers with severe physical and mental challenges. My understanding is that his son was given too much oxygen shortly after birth that caused damage resulting in cerebral palsy. My other friend and colleague has a son who suffered a stroke during her pregnancy that left him with paralysis on one side and cognitive difficulties. Despite all their worries and responsibilities of caring for these children who were becoming adults, my friends didn’t complain or feel sorry for themselves. In fact, they have always been two of the most upbeat and optimistic people I know. As I got to know them better, I marveled at how well they coped with the challenges their children faced, and I wondered how they could ever be happy again once they knew their children had disabilities that would profoundly impact their lives and the lives of their families.

As someone who believes that God puts people into our lives for a reason, I have no doubt that God placed these two caring parents of special needs children in my life long before my child was diagnosed with autism. Knowing I would need role models and empathy, He placed them close at hand to provide me with the support I needed. Even though the original prognosis for their children was quite poor, with their parents’ love, devotion, faith, and hope, their children overcame obstacles doctors predicted they never could. Moreover, in trying to give their children many experiences in life, they took them out in the community to enjoy activities, such as concerts and sporting events. As I watched them with admiration, I was learning lessons I didn’t know I would need later in life when my own child was diagnosed with special needs.  Essentially, some of the most valuable things I’ve learned about raising Alex I’ve learned from two special needs parents and the examples they’ve set. Of course, both of them, who are quite humble about their roles as special needs parents, would say I would have figured out what I needed to know on my own, but I am thankful for what I was able to learn from them.

1. Create a “new normal.” My child may not play sports because of his disability, but he can go to sporting events and enjoy himself. My child may not play a musical instrument because of his fine motor issues, but he can learn to love music by listening to it. Instead of complaining about what he can’t do or how our family life is different from other families’ lives, we focus on what he can do and create our own traditions that have meaning for us. For instance, while going to the grocery store is a necessary chore for some families, for us it’s a fun outing because Alex enjoys it so much.

2. Have hope. Both of my friends chose not to believe all the limitations professionals placed upon their children. They focused on what their sons could do instead of what they couldn’t do. My friend whose son had a stroke prior to birth was told by doctors that he would never walk or talk. Not only can he walk and talk, he has a job and lives in an apartment by himself, and he has a wicked sense of humor that shows how sharp his mind really is. I give his parents, especially his mother, all the credit for how far he’s come. Seeing his progress gives me great hope for Alex’s future.

3. Have faith. Although both of my friends’ children have dealt with serious physical conditions, their parents trusted God at all times. Despite the horrendous financial strains on their family budgets because of medical bills, they had faith that the Lord would provide, and He did. They knew that God has always been in control, and their faith carried them through many difficulties, just as faith has carried us through with Alex.

4. Keep a sense of humor. One of the qualities that has always impressed me about my two friends is their ability to find humor in situations that others may not see. Frankly, our kids are funny, but not everyone sees how clever and amusing they really are. Often humor keeps us from crying in some circumstances, and laughter is always preferable to tears.

5.  Choose joy. While caring for a special needs child can be exhausting and frustrating, I’ve learned from my friends’ example to choose to be happy. Not only does this make each day easier, but that joy can be contagious and spread to those around us. Recently, a friend of mine commented that I was always upbeat, which made her feel that she could be upbeat, too. I took that as a tremendous compliment and felt pleased that she saw me as a joyous person.

In my previous two blog entries, I’ve written about parents of children with autism who apparently could not cope with the struggles and decided that death was preferable to life, leading to tragic outcomes. I only wish that they had been able to learn from the special needs parents who unknowingly acted as mentors to me. Perhaps with creativity, hope, faith, humor, and joy, they could have endured the struggles and enjoyed the rewards. I’m just thankful for my friends who shared their experiences as special needs parents so that I would be better prepared for being an autism mom. They truly are gifts from God.

“…For the joy of the Lord is my strength.” Nehemiah 8:10

Another Cry for Help: The Tragic Case of Kelli Stapleton

In last week’s blog entry, I discussed the heartbreaking story of Alex Spourdalakis, a teenage boy with autism whose mother attempted to find medical help for his violent behavior and later fatally stabbed him to death and attempted suicide. While I certainly do not condone his mother’s decision to end his life or hers, I felt sympathy for all she had endured as a single parent trying to take care of her son who was becoming increasingly dangerous to others and was likely suffering from terrible abdominal pain. Our experience with our own Alex’s past bouts of aggressive behavior has allowed me to empathize with the fear and frustration that could drive a parent who did not have the support and faith we did to commit such a horrible and desperate act.

This week, the media reported another tragic story about a mother who attempted to take her own life and the life of her fourteen-year-old daughter with autism. [One account of this story may be read here.] In February of this year, Kelli Stapleton began writing a blog entitled The Status Woe in which she described the difficulties of dealing with autism and aggression, her daughter’s violent outbursts, and trying to find help for her daughter Issy. [A link to her blog may be found here.] In her last post this week on September 3^rd, she describes working diligently to get a school placement for her daughter. After thinking that they had successfully found a placement for her daughter, the plans fell apart when a behavior plan would not be implemented the way she firmly believed it should be. Instead, the school decided that they would not allow her daughter to enroll there and recommended instead that she home school her daughter. Kelli’s frustration and disappointment is evident in her statement: “I am devastated.” Later that day, she was found in her van with her daughter, both of them unconscious from carbon monoxide poisoning. Her daughter was hospitalized in critical care; she was arrested for attempted murder.

In response to the tragic news of the Stapleton family, the Autism Self Advocacy Network issued a statement [To read their statement, click here.] condemning not only the mother but also any media portrayals of parents like her in a sympathetic light. Part of their statement reads as follows: “At the end of the day, lack of services don’t cause attempts by parents to murder their kids. What may play a role, however, is the idea prevalent in our culture that it is better to be dead than it is to be disabled.” While I absolutely understand their position that people with autism need protection, their comment shows a complete disregard for what some parents endure. Lack of services leads parents to sheer mental and physical exhaustion and a hopelessness that could lead to desperation. Moreover, many parents suffer the same physical and emotional distress that victims of domestic violence face; however, this battering comes from their children, many of whom are bigger and stronger than they are. The second assertion that death is preferable to a life with disability is ridiculous. Too many parents fight tirelessly to help provide the best life for their children with disabilities, taking care of them themselves 24/7 with unconditional love. To suggest that those with disabilities are treated as though they are somehow less is unfair to parents who give them so much more.

After reading comments in the media regarding Kelli Stapleton’s actions, I noted primarily two distinct groups: those who have no direct experience with autism who show condemnation and those who have family members with autism who show compassion.  This division is not surprising, as some parents with autism often deal with criticism from those who know nothing about what life is like for them, giving them parenting advice and unhelpful suggestions about what they would do if they were in their situation. My advice to those who think they’re being helpful is the old adage, “If you don’t have anything nice to say, don’t say anything at all.” Parents need support and understanding, not uninformed counsel, no matter how well intentioned it may be.

In the movie The Big Chill, one I have watched many times, the plot begins with the funeral of the character Alex and the reactions of his college friends. In speaking about Alex’s suicide, the minister notes that things happen in life that we don’t understand and remarks, “This is one of those times.” He goes on to suggest that Alex should have had every reason to live, but somehow he lost all hope. Poignantly he asks, “Where did Alex’s hope go?” In thinking about Dorothy Spourdalakis and Kelli Stapleton, I’ve wondered where their hope went that they felt death was the only option for themselves and their children with autism. Even in our darkest times with Alex, I knew that God was there, and we never lost hope. I only wish that they had felt that same sense of hope, and I pray that they and all other parents of children with autism can find hope and peace in the darkness, knowing that the light will come.

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.” Romans 15:13