Sunday, December 27, 2015

Gifts

 
In the family photograph taken a few days ago on Christmas night, Alex is easy to spot. Among the two grandparents, three siblings and their three spouses, five cousins, two nieces’ boyfriends, and a little dog, only Alex and the dog are not looking at the camera. With Ed’s hand on Alex’s shoulder, my right arm around his waist and my left hand holding his left arm, we make certain that he doesn’t suddenly leave the group before the camera timer goes off and snaps the picture with him walking away. Although it would be nice if he were focused and smiling and free of Ed’s and my grasp, we are pleased he is there. Last year was the first time in many years that the three of us could join the rest of the family for a Christmas celebration, and despite all the confusion that fifteen people and a dog can bring, Alex remained calm and pleasant the entire evening. This is a gift.

On Monday, we took Alex to a new family doctor for a regular check-up. In the past few years, we have taken him to various family doctors because some have taken other jobs out of town and others have refused to take our health insurance. Each time we start with a new doctor, I have to recite Alex’s medical history, explaining how various aspects of autism, including gluten and casein sensitivities, candida overgrowth, and heavy metal poisoning, have affected his health. We liked the new doctor’s manner and his interaction with Alex, who was amazingly patient (and an amazing patient) as the doctor carefully assessed his medical history and recent blood test results and then thoroughly examined him.

Pleased with how well this first appointment had gone and what a positive first impression Alex had made, we were content to leave once we had asked and answered questions. However, the doctor turned to Alex and asked if he had any questions. Because Alex usually relies upon us as his legal health care representatives to communicate for him, we were surprised to hear him speak up and ask how long it would take for his toenail to heal. Taking Alex seriously, the doctor had him take off his shoe and sock, carefully examined the toe, and told him about three months, which satisfied Alex. Not only had Alex sat through the entire appointment without becoming anxious about how long it was taking, but he had also become an active participant in the process. This is a gift.

Later that afternoon, he also had a regular six-month appointment with his psychiatric nurse practitioner who oversees his medications for anxiety. Since she has taken care of him for nearly four years, we feel comfortable with her and expected a routine appointment because we knew his blood tests had all shown normal results. However, we didn’t anticipate having to sit in a crowded waiting room for nearly an hour. Wondering whether Alex had used up all his patience during the morning appointment, Ed and I tried to keep him entertained with a book we had brought about—of all things––time. While the two of us became more annoyed about having to wait, Alex remained remarkably calm. This is a gift.

After we were finally ushered from the waiting room to her office, Alex once again showed the progress he has made by answering all of her questions and relying less upon us to speak for him. Despite computer problems that meant she had to write all of his prescriptions by hand instead of the much faster electronic method, Alex sat patiently. When it was time to leave, we thanked her, and Alex walked toward her. Thinking that he just wanted to see what was on her computer screen, Ed and I were pleasantly surprised that he offered his hand to her for a handshake (As usual, he mistakenly extended his left hand instead of his right hand, but still this is progress in his social skills!) and politely said goodbye. This is a gift.

On Christmas Eve, Alex indicated that he wanted to go to church, as we had last year for the first time in many years, mainly because his cousin was singing in the choir. Like last year, we were pleased that he sat quietly yet seemed to enjoy listening to the choirs sing as well as watching children on the stage listening to the Christmas story. This year, as he smiled and swayed to the familiar carols, he also watched the lyrics projected on the screen at the front of the church. And then, he began to sing along. This is a gift.

On Christmas night, as we prepared to leave the family gathering, Alex hugged my parents with his typical loose arms and with his head leaned toward the other person’s shoulder, and then he purposefully headed toward the fireplace. Because Ed and I are always on guard, we followed on his heels, making sure that he wasn’t going to harm any fragile decorations that may have caught his eye. Then he leaned down and gently patted the head of my brother’s little dog who was resting there. Alex, who never pays much attention to animals, apparently wanted to say goodbye to the dog, the only other one in the family photo not looking at the camera. We thought he was oblivious to her presence, especially since she was lying in the corner of the room, but he had noticed her and wanted to show affection to her before leaving. This is a gift.

In the day-to-day busyness of life, especially life with autism, we may not always notice the little things. Yet, this week Alex revealed that he continues to make progress, and God revealed that He is continuing to heal Alex. How thankful we are for these precious gifts!

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” Galatians 6:9

Sunday, December 20, 2015

Fear Not

 
As mothers, our most important task is to raise our children to be happy, healthy, and independent. Consequently, one of our greatest fears is dying before we accomplish that goal. When our children have disabilities that make them rely upon us more, we worry about who might care for our children––even when they are adults––if we were not there to do it ourselves. However, our faith tells us not to fear because God already has everything figured out.

Yesterday, I read an emotional article about a young mother who passed away last week, leaving behind a husband and young daughter along with a letter she left for friends and family. When her husband posted this letter on Facebook a few days ago, her words went viral, shared thousands of times and capturing the attention of the mainstream media as well as social media. NBC Chicago entitled the story “Wisconsin Mom Who Died of Cancer Writes Heartbreaking, Hilarious Letter.” [To read this article, which includes a link to her letter, please click here.]

Certainly Heather McManamy’s courage in facing her death is admirable, but I failed to see what the media described as hilarity. Yes, she had some humorous comments in her letter, but I was more struck by the heartbreaking nature of her words. Even more than the sorrow of leaving behind her little girl, Brianna, I felt heartbroken that she did not seem to have faith in God when dealing with this greatest fear mothers face.

She states: “Whatever religion brings you comfort, I am happy that you have that. However, respect that we are not religious.” While I respect her candor that she was not religious, I wish for her sake and her family’s sake that she had had faith, which her letter seems to indicate that she does not. I think perhaps faith could have brought her comfort as she dealt with cancer and facing death and leaving her loved ones behind. Because I have not walked in her shoes, however, I don’t know that for certain.

What was especially heartbreaking from my perspective was that she does not want anyone to tell her daughter that she went to heaven. In her letter, she requests, “Please, please, please do not tell Brianna that I am in heaven. In her mind, that means that I chose to be somewhere else and left her.” She goes on to say, “Because, I am not in heaven.” I must respectfully disagree with her decision because I believe that knowing that our loved ones are in heaven provides comfort rather than confusion, even for children.

While Alex has been mostly spared of having to deal with the loss of loved ones in his life, he does talk about heaven and people whom he knows are there, including his beloved childhood doctor, his grandfather whom he barely remembers, and his most-admired U.S. President, Ronald Reagan. Moreover, he looks forward to going to heaven someday with anticipation because he indicates that he has a lot of questions he wants to ask God that he can’t find in books or on Google. Somehow I think he and God will have some fascinating conversations one day.

Alex’s complete and confident trust in God allows him to face the future mostly fearlessly, which comforts me as his mother. Last week, he awoke in the wee hours of the morning in a full-blown panic attack, something that has not happened in years. (The next day, Ed and I decided that the combination of dairy-free and gluten-free birthday cake and ice cream along with soy egg nog was not a good snack ahead of bedtime, and we decided to limit his evening sugar consumption to prevent further nighttime meltdowns.) Even in the midst of his adrenaline surge in which he shook and muttered about not being able to count to infinity, Alex knew to seek God’s help along with ours.

With his overly quiet voice, Alex rarely yells, but in the midst of his panic, he kept crying out, “Need to talk to God! Need to talk to God!” As Ed and I tried to calm and reassure him, we reminded him that God is always listening and that he can pray anytime to talk to God. While this isolated incident was upsetting because we hate to see Alex so distraught, we felt comforted that he knew what he needed to become calm: he just needed to talk to God. His faith was rewarded, and God calmed the storm within Alex so that his anxiety disappeared, and he could resume a peaceful sleep.

As Alex turned twenty-four last week, I assessed my work as his mother over the past two dozen years. Yes, he is happy and basically healthy, with the notable exception of autism, but he still has a way to go to be independent. However, as I began thinking about the tremendous strength his faith in God gives him, I felt a sense of accomplishment for teaching him what is most important in life. If something were to happen to me, he would have his faith to carry him, and he would know that he would see me again in heaven. Maybe it’s not as important that we teach our children to be independent as to teach them to depend upon God always, especially when life becomes overwhelming.

With the imminent arrival of Christmas this week, Alex and I have faithfully been counting down the days on our Advent calendar. More than most, he knows the true significance of the holiday, reminding us it’s Jesus’ birthday and looking forward to going to church on Christmas Eve to celebrate. Despite autism, Alex can fathom the significance of Christ’s birth, knowing that his Savior guarantees the ultimate reward in heaven. Consequently, we need not fear troubles in this earthly life, knowing that because God’s plans are good, indeed, we can celebrate with great joy.

“And the angel said unto them, ‘Fear not, for behold I bring you good tidings of great joy which shall be to all people. For unto you is born this day in the City of David, a Savior, which is Christ the Lord.” Luke 2:10-11

Sunday, December 13, 2015

The Eyes Have It: Eye Contact and Autism

 
One of the most obvious aspects of autism is the difficulty with making eye contact. Apparently, eye contact is becoming a problem not just for people with autism but also for young people who spend much of their time looking at cell phones and tablets. Yesterday I ran across an interesting online article from The Wall Street Journal entitled “Just Look Me in the Eye Already” that discusses this issue. Written by Sue Shellenbager and published May 28, 2013, this article points out that lack of eye contact can be a hindrance in work settings. [To read this article, please click here.]

According to research cited in this article, adults typically make eye contact 30-60% of the time in average conversation. However, eye contact should be made 60-70% of the time to establish emotional connections, studies show. As young adults have become accustomed to multitasking and using their mobile devices frequently, eye contact has declined. Psychologists attribute this need to constantly check social media on FOMO, or the fear of missing out on social opportunities. Ironically, while they are checking social media, they are missing out on the chance to interact with others socially in person.

Researchers also indicate that the decline in eye contact has occurred with the increase of telecommuting, where people become accustomed to communicating with others via telephone or computers and not having to make eye contact. However, eye contact can significantly influence others, which makes this skill important in work and social settings. Studies show that good eye contact conveys confidence, determination, and most of all, respect. Those who avoid eye contact are often perceived as “untrustworthy, unknowledgeable, and nervous.”

Studies have shown that eye contact must be held for certain amounts of time to be effective. In one-on-one settings, 7-10 seconds gazes are optimum, while 3-5 seconds of eye contact is best for group settings. In the work setting, too much eye contact (more than 10 seconds) causes the person to be viewed as aggressive or insincere. In social situations, too much eye contact may be a “sign of romantic interest or just plain creepy.”

For many who have autism, eye contact is a skill that must be taught because it does not appear to develop naturally. Some therapists aggressively attack this skill by grabbing children’s faces and insisting that they look at them. Others will repeatedly admonish children with autism: “Look at me!” or “Look me in the eyes!” However, children with autism may avoid eye contact not just because of impaired social skills but also because of sensory issues where they have trouble listening and looking at the same time.

Another possible reason why people with autism have impaired eye contact may be a motor skill issue. In the article “Why Kids with Autism May Avoid Eye Contact,” written by Karen Rowan and published online in Livescience on June 5, 2013, the problem with eye contact is linked to issues with brain processing. [To read this article, please click here.]

This article cites research done at Albert Einstein Medical College in New York in which children were shown a checkerboard pattern on a screen while electrodes measured their brain activity. Typical children showed response in their brains indicating that they were processing this information in the center of the visual field, while children with autism were processing this information in the peripheral field of vision. This makes total sense to me because we often see Alex looking off to the side instead of straight on at something. We have always suspected that his peripheral vision is stronger than his straight-on vision.

This study goes on to suggest that because motor skills are often impaired in children with autism, they may have a reduced ability early in life to control their eye muscle movements. Consequently, they get in the habit of using their peripheral vision instead of looking straight ahead. As a result, they do not develop good eye contact with other people, which is perceived as a poor social skill, but in all likelihood, is more of a motor issue.

Of course, eye contact is an important social skill, and we have worked with Alex so that others do not perceive him as rude or aloof or disengaged. In addition, we have to remind him not to look at people too long who catch his attention, especially little kids whom he innocently finds amusing, because we don’t want anyone to think he is “just plain creepy.” Along with his therapists, Ed and I gently remind him to look in the direction of people’s faces instead of keeping his head down, and we also gently remind him not to stare at people. Moreover, all of us praise him when he displays appropriate eye contact.

Certainly, we want Alex to develop all of his skills so that he can interact with others appropriately, but apparently he is not too unlike typical people his age in his lack of eye contact. Although we are thankful for the progress he is making in this regard, perhaps we just need to give him a cell phone to carry around everywhere, and no one will be the wiser that his issue is motor-related due to autism and not FOMO, due to being a multitasking young adult.

“Open my eyes to see the wonderful truths in your instructions.” Psalm 119:18

Sunday, December 6, 2015

Autism Holiday Shopping

 
Yesterday I began my annual quest to find the perfect birthday and Christmas gifts for Alex. Since his birthday falls nine days before Christmas, the importance of this adventure becomes double as I seek to find items that will not only thrill him for his birthday but will also keep him amused until the highly anticipated Christmas morning. A primary factor in finding these gifts is that they are not dangerous. Over the years, I have rejected toys for the following reasons: (1) toys with small pieces (choking hazard because he chewed on things until he was a teenager and stepping hazard for me because he left things all over the floor for me to find painfully when barefoot), (2) toys that were never intended to be thrown but would shatter if used incorrectly or would do property damage to things in their pathways or would hurt when hitting their intended targets––Ed or I––if hurled by an angry Alex, or (3) toys that for some strange reason he found upsetting (e.g. the “Don’t Like Elves!” phase of 1998). Thankfully, for nearly two dozen years, I have been mostly successful.

This week I read an entertaining essay on the Thinking Moms’ Revolution blog [To read this article, please click here.] entitled “The Great Autism Gift Scramble” that discusses the dilemma we autism moms face every year for our children’s birthdays and Christmas. Specifically, she describes trying to locate a copy of her child’s favorite Disney video Aladdin and the frantic search that ensued. In addition, she explains the “create a gift” problems that arise when children request something unique, such as “the dinosaur that talks and is pink polka dotted,” and she wonders whether she didn’t quite understand what the child wanted or whether the child had imagined the item or whether her child was simply messing with her. Nonetheless, she faithfully attempted to hunt down those desired objects. Last year, her daughter, who is interested in classic Hollywood, requested a movie star nutcracker, sending this devoted autism mom again on a wild goose chase to find the perfect gift. As she explains, “I repeat: you will do anything for them. Besides they deserve this tiny bit of happy.”

Similarly, I read a news article this week about an autism mom in Canada whose twelve-year-old son is obsessed with only the primrose-colored Crayola markers. [To read this news report, please click here.] If he cannot find his precious primrose markers, he goes into meltdown mode. As his mother, Stacey Haley, explains: “No primrose means hell in my household.” After making a plea for people to send her primrose markers, she received packages from around the world containing primrose markers. In addition, Crayola heard her story and also sent her primrose markers; therefore, she has requested that people no longer send markers anymore because they now have plenty. Overwhelmed by the generosity of strangers, she noted, “What started as a little ask for my son has turned into a movement of supportive communities who have gone out of their way to make a difference in the life of our family.”

Fortunately, Alex has not asked for anything elusive, unusual, or nonexistent this year. A few years ago, he wanted old calendars for Christmas, which taxed my brain until I thought about old calendar towels. Then I discovered the magic of eBay, which connected me to people who apparently hoarded antique linen calendars until deciding to sell them to crazy autism moms like me. Now he has a collection of towels from various decades of the 1900’s. Of course, he has moved on from that obsession, and the highly sought old calendars now sit folded in a box as a memory of Christmas Past.

This year, when asked what he wants for his birthday and Christmas, Alex has no requests. I specifically asked him the other day what he wanted when Ed’s sister asked me to ask him so that she could fulfill a wish. Even reminding him that she could track down something in New York that he could not find here, he still was noncommittal, asking me, “What would be good?” With no help from him, I suggested that she send him a gift card from Barnes and Noble so that he could pick out books when he was more decisive.

Of course, this did not solve my problem of what I should get him. Yesterday, I set out in the early morning hours, armed with small envelopes labeled individually with store names and their opening times along with notes about some items to look for and coupons for discounts (and realizing that Alex did, indeed, get his OCD from me). With my Skechers Go Walk sneakers and my Fit Bit Zip to record my steps, I was ready to walk to the ends of the earth (or at least through selected stores in my area) to find perfect gifts for Alex. After four hours and 2.53 miles (according to my Fit Bit Zip), I felt triumphant.

As I scoured the stores’ shelves, I realized that even though Alex is a young adult, most of the same criteria apply for the perfect gift now as they did when he was younger although thankfully he doesn’t throw things in anger anymore. The teacher in me looks for gifts that are educational, items that will encourage developing his speech, language, fine motor, and social skills, which means I spend a lot of time looking at books and games. Knowing his love of sports and music, I look through the fans’ section for his favorite teams and search through the CD’s for something new for his listening pleasure. If in doubt, I always choose something in red, his favorite color. Of course, I also have to keep the annual tradition of getting him at least one calendar, a new Old Farmers’ Almanac, and the latest edition of the World Almanac, which he loves so much that he literally sleeps with it.

While I wish that Alex could give me some guidance about a gift he would really like this year, I suppose I should be grateful that he’s not asking me for something nearly impossible to find. In addition, I think his lack of gift requests probably means at least one of several possibilities:
He trusts me completely to choose gifts he will like.
He has truly become a man, and we all know that men never give good gift suggestions (or at least I have learned this from his father and my father).
He has everything he wants and needs in life, so anything else is just a bonus.
He is totally content with his life and really doesn’t need anything to make him any happier.
As I watched him study with delight the ornaments on our Christmas tree this week, I think that the latter reason is probably the most likely one. After all, as Alex reminds me, Christmas is Jesus’ birthday, and that’s the best reason to celebrate. Certainly, we also think Alex’s birthday is pretty special, and as we celebrate the birth of God’s son, we also thank God for the birth of our son and for all that He has given us.

“Yes, you will be enriched in every way so that you can always be generous. And when we take your gifts to those who need them, they will thank God.” 2 Corinthians 9:11

Sunday, November 29, 2015

While We Wait

 
Today marks the first day of Advent, the season leading up to Christmas. In the Christian Church, Advent, from the Latin word adventus meaning arrival, is a time of anticipation, waiting for the celebration of the arrival of Baby Jesus. In the business world, this first day of Advent comes between the significant shopping days of Black Friday and Cyber Monday, and merchants await the profits to be gained from eager holiday shoppers. For most people Advent is a time of waiting for Christmas marked by a flurry of activity in preparation for this important holiday.

Like many people, Alex eagerly anticipates Christmas, his favorite holiday, counting down the days on the calendar. Like me, Alex is not by nature a patient person. However, he relies upon his beloved numbers and measuring tools of clocks and calendars to help him deal with waiting. Moreover, he has adopted a philosophy about the future, often telling us: “Wait and see.”

This week, we have had our patience tested in situations where we had to wait. On Friday, Alex’s ever-punctual music therapist was late for the first time because he was involved in a meeting that ran longer than he had anticipated. Although he called to let us know he would be late, I knew that Alex was becoming more anxious every minute he had to wait. Checking his watch and the clock on the wall, Alex was patient at first, but as time passed, he became more and more concerned whether his music session would ever happen. Adding to his frustration was that he was looking forward to singing Christmas songs that his therapist had promised the previous week. As I talked him through his anxiety, I gave him the choice to leave or stay, and he chose to stay. The wait was worth the effort because when his therapist arrived, they were able to sing the songs Alex had been waiting to sing all week long. Of course, Alex’s first request was “The Twelve Days of Christmas,” a carol about waiting for the good gifts to arrive.

This weekend, as I ran some errands, I also had to muster up my own patience, as the official start of the Christmas shopping season brought more people out seemingly to get in my way. As I waited in my car for people who acted as though they’d never seen green traffic lights before, waited for people who seemed to want to stand endlessly in front of items I needed to buy, and waited in lines to check out behind people who couldn’t make decisions about how they wanted to pay, I took deep breaths and tried to keep my peace. Knowing that the month of December will be filled with these moments of waiting, I found myself questioning: What do we do while we wait?

A quick concordance search of the Blue Letter Bible online shows that the word “wait” appears in 70 verses in the New Living Translation of the Bible and in 101 verses in the King James Version of the Bible. As I scanned through these verses, I noticed that not only are we told to wait, but we are also told how to wait. The verb “wait” is often followed by the adverbs “patiently” and “quietly.” Scriptures also tell us to wait “confidently,” “eagerly,” and “with eager hope.”

Consequently, we know how we’re supposed to wait, but I still struggle with what I’m supposed to do while I wait. From the time Alex was diagnosed with autism, I have been waiting for him to get better, sometimes patiently waiting, but often times restless and frustrated when progress seemed slower than I thought it should be. To fill my time, I focused on autism research, seeking answers to my questions and trying to find ways to make Alex better.  When I find myself too focused on the future and the “what if’s” both positive and negative, I have to remember to live in the present and have faith that God has already figured out the future for Alex.

When I question Alex about future events, such as which sports team he thinks will win a game or what he thinks the weather forecast will be, he reminds me to watch for what the future holds by saying, “Wait and see.” Not only does he understand that waiting––even though he and I both dislike that process––is part of life, but he also holds anticipation for what is to come. Moreover, he has an expectation that waiting will bring a reward. To understand the value of waiting requires peace brought with patience along with hope bolstered by faith. Alex’s complete and unquestioning faith in God allows him to believe that if he waits, he will see something good, even if it’s as simple as being able to sing “The Twelve Days of Christmas” with his music therapist.

During this sacred yet busy time of Advent, I pray that I remember to be patient as I wait, knowing that good things will arrive in their good time. Just as certainly as I know that Christmas will arrive on December 25th, I also know that Alex will get better in time. Trusting God, I will strive to wait patiently, quietly, eagerly, confidently, and with eager hope at what He has planned for Alex’s future, which I have no doubt will be something to see.

“Such things were written in the Scriptures long ago to teach us. And the Scriptures give us hope and encouragement as we wait patiently for God’s promises to be fulfilled.” Romans 15:4

Sunday, November 22, 2015

Thirty Thankful Thoughts

 
In preparation for Thanksgiving, many people take time during the month of November to reflect upon those things in their lives for which they are grateful. Some post daily statements of thankfulness on their Facebook walls, and others share their blessings around the Thanksgiving dinner table. Although I have developed a habit of thanking God through quick prayers throughout each day, even for seemingly trivial blessings like getting good parking spots, finding my contact lenses when I drop them on the floor, and enjoying the comfort of my bed, I also remember to thank Him for the great blessings in my life. This year I did not do daily postings on Facebook, but I sat down this morning to make a list of thirty things for which I am thankful and was amazed how quickly that list came to mind. Like my prayers throughout each day, some items on the list may seem obvious because of their importance, but other smaller ones carry impact because they, too, remind me of God’s goodness, especially those that reveal how far He has brought Alex in spite of autism. Without further ado, here are this year’s thankful thirty:

Family––We are always grateful to our families who have loved and supported us in all situations and who have celebrated Alex’s accomplishments with us.

Friends––I am thankful to my friends who have become family, taking special interest in Alex, praying for us, and understanding that he is always my first priority.

Financial Security––We are blessed that our job schedules coordinate so that either Ed or I (or both of us) can always be home with Alex. Even though I work part-time, our teachers’ salaries have always been enough to provide what we need to live a reasonably comfortable life, despite the added expenses autism has brought. We have confidence that God will provide what we need financially.

Nurse Practitioner––When Alex’s behavior became extremely difficult to handle nearly four years ago, we searched for a professional to help us. God led us to Michelle, who had experience working with young men who had autism, and she knew what to do to help Alex. Her expertise in finding the right mix of medications to treat his anxiety and subsequent aggression has completely changed our lives and made our home peaceful, a tremendous gift we never take for granted.

Pharmacists––Our pharmacists Anita and Kris not only do a terrific job helping us keep Alex’s medications straight and answering my various questions, but they also show kindness to him, greeting him warmly and asking how he’s doing.

Behavioral Therapist––After two years of working with Alex, Jennifer has become his teacher, confidant, cheerleader, and friend. Moreover, she has become all of those roles for me. Her guidance and support have been crucial in the tremendous progress Alex has made.

Music Therapist––Noel is one of those rare people who just understands Alex and brings out the best in him. Alex even expanded his limited wardrobe of striped shirts to flannel button-down shirts and graphic t-shirts because his role model, Noel, wears them. Although Noel’s personality is usually low-key, when Alex does something amusing or shows initiative by suggesting songs or spontaneously singing, he animatedly shares the experience so that I can enjoy it, too.

Director––The director of developmental disabilities at the agency where Alex receives music therapy and respite care is especially fond of Alex and makes a special effort to engage him when we arrive for music therapy. Laurie makes no secret of how much she likes him, telling me last week that he is “delightful.” In addition, she often compliments the job Ed and I have done as Alex’s parents, which is an added bonus.

Companion––We had to wait two years before finding a respite care worker for Alex, but she was worth the wait. Funny and sweet, Jessica understands Alex’s quirks and finds him very amusing. Although I know that he likes her as much as she likes him, he made his affection known for the first time recently when he spontaneously hugged her goodbye, which made her eyes fill with tears of joy.

Case Manager––Alex’s case manager, who oversees all his paperwork and finances with the state, is an energetic, smart, and friendly young woman who has the reputation of being the best case manager in the area. Knowing that Zika is even more organized than I am, I completely trust her to make sure all his services and supports are arranged properly. When she was recently promoted, she gave several of her clients to other case managers, but kept us, and we are thankful she did.

The Kindness of Strangers––As we have been taking Alex out in the community more, we have the opportunity to see kindness in people who recognize his disability but see past it to his pure heart. We appreciate those who make an effort to engage him in conversation, albeit limited, making him feel special. A couple of weeks ago, a kind man bought our dinner at a restaurant, telling us that he saw us taking care of Alex and wanted to take care of us. Our experiences with Alex have shown us unexpected goodness in people.

The Internet––When autism has isolated us, the Internet has allowed us to interact with others who shared our experience and kept us from feeling alone. Moreover, the ability to do autism research so easily has been a tremendous blessing over the years.

Mother’s Intuition––Raising a child with autism brings responsibilities over and above those of typical parenting. In making decisions, Ed and I discuss the options and pray for guidance. However, my mother’s intuition often guides me to the right places, and I know that God is really the force behind those instincts.

Because Alex has made good progress in various areas, I am thankful for the things he has learned and the things he is doing that show that progress, such as:

Independently Toileting––Every time Alex flushes the toilet, I say a prayer of thanks that he can use the toilet on his own. After years of accidents, cleaning carpets, doing multiple laundry loads of his clothing and sheets, and trying every potty training technique known to man, I am so grateful that he finally learned to use the toilet. This accomplishment, more than most, reminds me that some things take a long time to learn and that I should never give up hoping that he will eventually be independent.

Hanging Up His Jacket––One of the things Alex learned in his previous day program was how to hang up his jacket. Even though it may take several tries, he keeps trying, a testimony to his persistence, which has helped him make progress along the way.

Putting Away His Dishes––Alex has begun cleaning up after himself without being told. When he brings his dirty dishes to the kitchen sink without a reminder, we are reminded that he is showing responsibility, which is encouraging and gratifying that he is learning.

Finding Lost Items––Instead of having a meltdown because he can’t find his stuff, Alex now calmly looks for his missing belongings on his own without demanding we find them for him. Moreover, he even looks in reasonable places, and he finds his efforts rewarded by being able to find what he has misplaced.

Patience––Alex has learned to wait patiently, which is a testimony to his progress, because waiting used to bring anxiety. Armed with a watch and a schedule, he knows that good things come to those who wait, and he is willing to wait patiently instead of driving us crazy with repeated questions regarding when things will happen.

Responsibility––After years of carelessly leaving his belongings around the house, often on the floor, Alex finally learned to take care of his things. We are amazed by how carefully he handles his iPad and his eyeglasses, treating them responsibly because he knows they are fragile. In addition, he has learned not to touch breakable items in our house, which means that we have been able to return our glass and porcelain knick knacks throughout our home after they spent years of hiding packed away in the safety of the basement. Their presence reveals our trust in Alex and his respect of property.

Attention Span––Alex can now watch an entire movie or a sports event on television and follow what is happening because his attention span has gotten much better. Not only does he watch these with interest, but he also asks good questions about what is happening so that he can learn more.

Companionship––Along with watching television, sports, and movies with us, we enjoy a companionship with him in other daily activities. He has become my sous chef who keeps me company and helps me when I’m making dinner. Instead of demanding when dinner will be and whining that it’s taking too long, he enjoys taking part in the process and knows that the effort will be worthwhile.

Appetite––Even though Alex can’t eat grains with glutens or milk products, he has a healthy appetite and a willingness to eat a variety of foods, especially healthy ones. In fact, Alex is probably happiest when he is eating a meal, and he takes his time to savor every bite.

Going Places––Because Alex’s behavior has improved significantly, we have been able to take him many different places, which he enjoys thoroughly, whether it’s going to sporting events, concerts, stores, or restaurants, which combine his love of food and going places. Not only does he have a good time, but we also have fun watching him enjoy himself during our family outings.

OCD Under Control––Thanks to medication, Alex’s OCD has been under much better control. His recent obsessions seem to have faded, thank God. We no longer have to wander the aisles of Pet Supplies Plus every Sunday evening, we no longer have to keep a surplus of Welch’s sparkling grape juice in the refrigerator so that we never run out of it, and we don’t have to answer questions every hour about when bath time is. This is good, and we are thankful.

Breakfast––For some unknown reason, Alex stopped eating breakfast a few months ago. However, his morning attitude became grouchy and demanding. After putting two and two together, my mother’s instinct kicked in and thought there may be a connection between the two. Thinking that low blood sugar from not eating may contribute to Alex’s crabby morning disposition, we decided to encourage him to eat breakfast, and the results have been rewarding. Feeding Alex breakfast has made him much more pleasant, not just in the morning, but also for the entire day.

Good Health––For the most part, Alex is quite healthy and rarely gets sick. His good appetite, willingness to take vitamins, and following my directions to keep him healthy all contribute to his good health, but God’s protection provides what Alex needs. This weekend, Alex has a cold, and he has shown what he has learned by asking for vitamin D and pain reliever and by resting and eating healthy foods. Apparently reading all those medical books has paid off for him!

Yeast Be Gone––After dealing with yeast overgrowth in Alex’s digestive tract for more than four years, we currently have it under control using a nutritional supplement, SF 722, that acts as a natural antifungal. Because the yeast is irritating, causing sores in Alex’s mouth and throat, dandruff, and acne, he responds to these flares with bad behavior. After trying a variety of antifungal medications and supplements that temporarily relieved the symptoms, we have prayed for a cure and think we may have one. We are tremendously thankful for this healing.

Taking an Interest in Others––Perhaps because he is less anxious and feeling better physically, Alex has begun to take a greater interest in other people. He wants to know more about their lives and interests, and he asks good questions (instead of his former nosy ones wanting to know statistics such as age, weight, and how much money they have) that reveal his desire to learn about them. This truly shows progress on his part.

Prayers––My favorite time of the day is saying bedtime prayers with Alex. His insistence on praying for everyone he has ever known and even throwing in some people he doesn’t (such as former baseball player Sammy Sosa) makes me smile, and holding his hand as we talk to God together is a precious time I treasure. He exudes a peace and joy as we pray, and I am blessed to share that with him on a nightly basis.

Faith––Although my parents raised me to have faith that I have also shared with Alex, dealing with the struggles that autism has brought our family has strengthened my faith beyond what I could ever imagine. Moreover, Alex has reminded me to have a deeper faith––that complete child-like faith that he shows––knowing that no matter what, God is always with us, guiding us, loving us, and blessing us. Happy Thanksgiving!

“Give thanks to the Lord, for He is good! His faithful love endures forever.” Psalms 118:1

Sunday, November 15, 2015

One in 45

 
The latest U.S. autism statistics were announced two days ago, and the news is not good. According to the report from the Centers for Disease Control and Prevention and National Center for Health Statistics, the prevalence of children between the ages of 3-17 who have autism is now 1 in 45. More alarming is the rate of increase. Between 2011 and 2013, the rate was one in 80, or 1.25 percent of children. With the current statistics showing that 2.24 percent of children have autism, this shows an 80 percent increase in just a few short years.

Of course, the researchers want to make all kinds of excuses about why the rate of autism is dramatically rising instead of simply acknowledging what parents and teachers already know—we have a lot more kids with autism than we did in the past. One of the reasons given for the increase was a change in the questionnaire format. Specifically, the lead researcher notes that autism is now listed first on the questionnaire ahead of developmental disabilities, and he believes that more parents chose autism because it was listed first. Certainly, a real increase in autism rates couldn’t possibly be the reason; furthermore, one could not expect autism parents to fill out forms correctly [sarcasm intended].

Moreover the usual suspects have been cited as possible reasons for the increase in autism found in this research study: over diagnosis of autism and the ever-vague and rarely specifically named possible environmental factors. Naturally, all parents want their children to have autism, especially if it’s going to be such a popular diagnosis. All the cool kids will have an autism label, and apparently more and more will be getting one. Some mothers aspire to be soccer moms and take their kids to games and practices; others prefer to take their kids to speech therapy and ABA therapy and occupational therapy, just a few of the perks of being an autism mom [again, sarcasm intended].

In an article entitled “Autism cases in U.S. jump to 1 in 45: Who gets the diagnosis, in 8 simple charts,” The Washington Post shares an excellent overview of who these children identified with autism are. [To read this article by Ariana Eunjung Cha, please click here.]

1. Approximately half of children (55.4%) are between the ages of 3 and 10; children between the ages of 11 and 17 make up 44.6% of those diagnosed with autism.

2. Traditionally, the number of boys with autism has always been greater than the number of girls with autism. This trend continues, as the current research shows that three fourths of the children with autism are boys versus one fourth of the children are girls. This shows an increase in the number of girls being diagnosed with autism, however. In the 2011-2013 study, only 18.3 percent were girls. With the help of my husband, who is much more mathematically inclined than I am, these new statistics mean that approximately one in 27 boys has autism. That means that statistically, every typical classroom will have one boy with autism. Having taught for more than thirty years, I can confirm that the number of students with autism has risen dramatically during my career in teaching. I can also confirm that most school districts are in no way ready to handle these students with very special needs.

According to the Indiana Resource Center for Autism based at Indiana University in Bloomington, Indiana, my home state, the number of students identified with autism spectrum disorders is clearly on the rise. In a recent article entitled “Increasing Incidence of Autism Spectrum Disorders Continues in Indiana" [To read this article, please click here.], the increase in actual numbers of students in Indiana public schools who have autism spectrum disorders is staggering.  According to the Indiana Department of Education, the number of students with autism enrolled in Indiana public schools is 14,179 out of 1,009,943 total students, or 1 in 77 students. Of course, some parents of children with autism choose to enroll their children in private schools or to home school them, as we did Alex, because public schools often cannot meet the unique needs students with autism have.

What is more mind-boggling is the graph this article includes, showing the increase of students who have autism in the Indiana public schools. While the number of students with autism this current school year (2014-2015) is a little over 14,000, five years ago, that number was a little under 11,000. Ten years ago, the number of students with autism in the Indiana public schools was less than half of the current rate at a little over 6,000 students. To truly boggle the mind, in the 1998-1999 school year, when Alex would have been a first grader, the number of children with autism in Indiana public schools was about 2,000. In sixteen years, the number of students who have autism in Indiana public schools has increased more than seven times.

As if those figures weren’t unsettling enough, this article also points out the monetary factors involved with autism. Quoting the CDC research, the article notes that the estimated cost of caring for a child with autism is $17,000 to over $21,000 per year more than raising a child who does not have autism. These extra expenses include costly therapies, health care, and education. If the autism rates continue to grow, how will schools afford to provide education to all these children with autism?

3. Autism affects all races, but predominantly the majority (59.9%) of children with autism are white. Hispanic children make up 16.1% of the total, Black children account for 13.5%, and other ethnicities total 10.6% of the children diagnosed with autism. These statistics mirror the overall population statistics, with approximately 17% of the U.S. population identified as Hispanic and 13.2% of the U.S. population being Black. Consequently, autism seems to affect all ethnicities fairly equally.

4. Contrary to the reports that autism breaks up marriages, most children with autism (68%) live with both parents.

5. Children with autism come from all levels of income fairly equally. In dividing the levels of family income into four groups, the highest level of income was 21.5%, the next level was 25.1%, and the lowest level was 21.4%––all statistically similar. The third group, just ahead of the lowest level of income was the highest at 32.1%. One wonders if this level is made up of parents who are struggling to pay for the $17,000-$21,000 of extra costs for therapies needed for their children with autism.

6. In comparing parents’ levels of education, approximately two thirds of the parents of children with autism have more than a high school education, and a little less than one third of the parents reported having a high school education or GED or less.  The researchers assume the reason for higher rates of children with autism in better-educated parents may be that they are more observant and more likely to get help for their children.

7. Slightly more than half (54.7%) of children with autism live in a large metropolitan area. Perhaps their parents have migrated to these areas because they can find better services often associated with large children’s hospitals found in major cities.

8. Nonetheless, children with autism can be found throughout the U.S. According to this study, 21% live in the Northeast, 21.5% live in the West, 26.2% live in the Midwest, and 31.2% live in the South. Once again, autism shows that it doesn’t discriminate; fairly equal numbers can be found throughout the country. Moreover, the impact of increasing numbers of children with autism should be a growing concern in every part of our nation.

While this newest research not only indicates an increase in numbers of children and their families impacted by autism, its statistics also show that autism can be found everywhere in the U.S. in every age of children, gender, ethnicity, family structure, income level, level of parental education, and geographical type and region. What this research does not indicate is the definite reason for this epidemic, nor does there seem to be much effort made to find a cause for autism.

To make feeble excuses about how questions are answered or possible better diagnostic methods does not address the costs—emotional and financial—of providing support for all of these children with autism in family, educational, and medical settings. To ignore this problem that is clearly growing rapidly is at best foolish and more likely disastrous. As an autism mom, I will not be silent. We must figure out what causes autism now for our children’s sakes as well as for our society that cannot provide for the needs of those currently diagnosed with autism, let alone those who will be diagnosed in the future. With God’s help, I pray that we find the answers we desperately seek.

“Get ready; be prepared! Keep all the armies around you mobilized, and take command of them. You and all your allies—a vast and awesome army––will roll down on them like a storm and cover the land like a cloud.” Ezekiel 7, 9

Sunday, November 8, 2015

Jazz and Joy

 
This past week, we took Alex to a jazz concert performed by the Faculty Jazz Trio at Valparaiso University. As I have mentioned in previous blog entries, Alex loves jazz music, thanks to Ed, who introduced him to various types of jazz as they listened to CD’s together over the years. I suspect that Alex’s fondness for this type of music lies primarily in his association of jazz with pleasant times spent listening to the music with his dad. Additionally, I think he probably likes the instrumental music because he doesn’t have lyrics to distract him from the music itself. However, I also know that Alex has a special affection for any words that have two z’s in them: blizzard, drizzle, Rizzo (his favorite baseball player), pizza, and jazz.

Like Alex, I have developed an appreciation for jazz because of Ed’s interest in it. Once Alex became hooked on the music, I also learned to enjoy it even more because it was something we all could share as a family by going to concerts together. Similarly, I discovered an interest in NASCAR after seeing Ed and Alex thoroughly engaged in watching stock car races on television every weekend. Trying to figure out what they found so appealing, I, too, was drawn in to watching auto racing, which is now my favorite sport, as well as another common interest we share as a family.

One of the nice things about living in a college town is the opportunity to take Alex to various events that he finds entertaining, such as concerts. To be honest, any time we take him to events at the university, whether they be concerts, astronomy lectures, or sporting events, I feel a little wistful. As I see the college students who are about Alex’s age, I feel somewhat sad to recognize that they are living the life that Alex could be enjoying, had autism not affected his brain and made speech, fine motor, and social skills so difficult for him. Of course, he is oblivious to this realization, which is a blessing. He doesn’t know what he’s missing.

During the concert, Alex swayed to the music, watched the musicians intently, and smiled frequently as he showed delight at being able to be part of a live music event. As Ed commented afterward, the best part of the concert was watching Alex enjoy himself so much. Moreover, we were pleased to see that he has learned appropriate social behavior, sitting quietly, paying attention, and even knowing when to applaud. With jazz concerts, this takes some learning because applause is not limited to the ends of songs; Alex now knows that clapping is appropriate at the ends of solo performances within the songs. At one point between songs, he leaned over and quietly asked Ed why no one had played the saxophone that was placed on the stage, showing that he was very alert to what was happening. Ed explained that a guest musician was going to play the saxophone, and when the saxophone player joined the trio, Alex gave a knowing smile.

When I wasn’t watching the musicians who clearly loved playing music or Alex who clearly loved hearing music, I glanced around the audience to see others’ reactions. What I noticed was that none of the college students were nearly as engaged in the concert as Alex was. Looking bored or engrossed in whatever was on their phone screens, they were missing the enjoyment of the moment, the joy that Alex found in the music. Perhaps they were worried about studying they needed to do after the concert or concerned about keeping up their friendships through texting and social media—none of which bothers Alex because he doesn’t live the life of a college student.

While Alex may miss out on the typical things that college students enjoy, he also is spared from the worries many college students suffer. He just enjoys life to the fullest, delighted to go places, and he expresses his joy freely, not caring what anyone thinks of him. What makes Alex’s contentment even more special is remembering the dark times when anxiety held him captive and made him unable to experience joy. Although those times of sorrow seem wasted, we realize that we appreciate Alex’s happiness even more because it was restored to him and to us after many trials and heartaches.

As described in Chapter 61 of Isaiah, we are now living “The Year of the Lord’s Favor”: “And so you will inherit a double portion in your land, and everlasting joy will be yours…All who see them will acknowledge that they are a people the Lord has blessed.” While we have gone through ordeals with autism, Alex has overcome many obstacles, and he faces life with appreciation for what he has instead of bitterness for what he has lost. Moreover, we have learned to face the future with faith and hope instead of fear. Truly, as the Psalmist proclaims, we “sing a new song to the Lord, for he has done marvelous things”!

“Those the Lord has rescued will return. They will enter Zion with singing; everlasting joy will crown their heads. Gladness and joy will overtake them, and sorrow and sighing will flee away.” Isaiah 51:11

Sunday, November 1, 2015

Caregiver

 
“Mrs. Byrne, what’s your son going as for trick or treating?” asked one of my seventh grade students on Friday. Now that the first quarter of the school year is over, my students know that they can ask me questions about my personal life, and I know that they are curious about my life outside of school.

“He’s not going trick or treating. He’s an adult,” I reminded them. Some of them looked at me curiously; others remembered that I had told them that he’s twenty-three years old.

“But I thought the reason you only teach in the mornings is because you have to go home and take care of your son,” another commented.

“Yes,” I began cautiously, knowing that one of the students in the class also has autism. “Remember, I told you that he has autism and needs my help because he can’t do some things by himself.” Some of them showed signs that they recalled what I had already told them about Alex and nodded knowingly; some of them looked at me sympathetically.

Trying to come up with a simple way to summarize what our life is like, I told them, “He’s kind of like a giant five-year-old.” That seemed to satisfy their need to know, and the bell rang to end the class. In many ways as their teacher I play the same role that I play as the mother of an adult son with autism––caregiver. I loan them pencils they have forgotten to bring, give them bandages for wounds real and imagined, listen to them tell their worries and accomplishments, and most of all, make them feel safe and nurtured.

While I think being able to take care of others is one of my strengths, I also need to remember to take care of myself. This week, I read an article online entitled “10 Signs of Caregiver Stress” and felt fortunate that now I rarely suffer from any of the symptoms: depression, withdrawal, anxiety, anger, loss of concentration, changes in eating habits, insomnia, exhaustion, drinking or smoking, and health problems. [To read this article, please click here.] Because Alex has improved over time, he requires less care from us, and we have learned to cope with the everyday stresses of taking care of a child, and now an adult, with autism.

This article also provides helpful tips in coping with the stressors associated with caregiving, offering fourteen strategies for controlling stress. This list of suggestions includes seeking help in the form of respite and health care resources, asking for financial help, joining support groups, and finding caregiver resources. In addition, the list recommends that caregivers take care of their own health through exercising and regular checkups. The majority of the list, however, focuses upon dealing with mental stressors and offers excellent suggestions for coping. To keep from becoming overwhelmed by the demands of caretaking, the need to prioritize, make lists, and establish daily routines––all of which I find extremely valuable––is emphasized. Other recommendations include keeping in touch with friends and family while also making time for oneself and recognizing the need to say no to some requests. Moreover, taking time off from a job may be required to give the time needed to balance caregiving and taking care of oneself.

Probably the most useful suggestions from this article included those regarding how to shape thinking as ways to cope with stress. Strategies recommended include the following: setting realistic goals, identifying what can and cannot be changed, forgiving oneself for imperfections, and thinking positively while keeping a sense of humor. I know that all of these strategies have helped me cope with the stresses autism has brought into our family life. I also know that when I forget these suggestions, I feel overwhelmed, trying to do the impossible, being too hard on myself, and taking things entirely too seriously. Additionally, I would add prayer as the most vital coping technique, for praying always puts life into perspective for me and eases my worries, bringing a sense of calm and peace.

Truly, caring for a loved one with a disability demands mental and physical energy and can overwhelm the caregiver. However, I sometimes find lately that Alex and I switch roles, as he is also learning to care for me. Yesterday, I found myself frustrated by a seemingly ordinary circumstance, and Alex was able to put the incident into perspective for me, instead of my doing that for him. We were supposed to have a new clothes dryer delivered between 12:30 and 2:30 in the afternoon, but as the day wore on, clearly the delivery was not going to happen within the time frame we had been given. Although we were hoping for an early delivery so that we could go to a basketball game as a family, that was not to be. Even though I’m sure that Alex was disappointed about not going to the game, he never complained or got upset about the change in plans.

When the delivery truck finally arrived around 4:30, Alex was a little nervous about how the late installation of the dryer would impact his precious dinnertime, telling me he was “very hungry.” I handed him a couple of gluten-free/dairy-free cookies to tide him over until we could have dinner, and he was satisfied. Because we had to be home to give out candy to trick-or-treaters starting at 5:30, our original plans to go out to dinner at a restaurant were also cancelled. Again, Alex was disappointed, but he remained pleasant and never complained about the changes caused by the delayed dryer delivery.

After being annoyed most of the afternoon waiting for the delivery guys, their arrival further irritated me because they did not properly install the dryer and told us we would have to wait for someone from the service department to fix the problems. I think they were in a big hurry because they were running late, so they didn’t bother to put the leveling feet on the bottom of the dryer, which means the door won’t stay open for loading clothes, and they didn’t hook up the vent in the right place, so we can’t shut the door to the laundry closet because the dryer is sticking out too far. As my mother would say, “It was a real disappointment.”

On the positive side, the dryer does work, so I tried drying a load of clothes yesterday evening. Alex with his exceptional hearing noticed the quiet hum of the dryer and asked me what that sound was. I explained that it was our new dryer, and he smiled, commenting that it had a deeper sound than the old one. Of course, the reason why we got rid of the old one was that it sounded like it was grinding gravel, so this truly was a big improvement. As I watched Alex amused by the gentle sound of the new dryer whose delivery had caused so much annoyance that day, I realized that he had the attitude I needed. Instead of being upset that the delivery had not gone as I’d planned, I was fortunate to be able to have a nice new clothes dryer, one that had a pleasing sound. All of the other details will be resolved, and there was nothing more we could do to fix them until next week. Despite all the irritations and changes in plans, Alex had remained calm and seen the bright side of the situation, and he showed me that I needed to do the same. I’d like to think that he learned that from me. Maybe I was wrong in the way I explained Alex to my students; maybe it’s not just that I take care of him but that he also takes care of me. More importantly, Alex and I know that God takes care of us as the ultimate caregiver, helping us cope with all issues big and small.

“Give your burdens to the Lord, and He will take care of you. He will not permit the godly to slip and fall.” Psalm 55:22

Sunday, October 25, 2015

The New Kid on Sesame Street

 
A few days ago, a new character joined the Sesame Street neighborhood, and she has already become controversial as a topic of discussion in the media. Julia has orange hair and green eyes. She has trouble making eye contact, sometimes takes a long time to answer questions, and flaps her arms when she is excited.  In addition, she is also described as curious and very smart. Julia has autism.

Introduced by the Sesame Workshop a few days ago, the new character is “part of an initiative designed to reduce the stigma surrounding autism.” [To read the news report from PBS, please click here.] This initiative, entitled “Sesame Street and Autism: See Amazing in All Children” provides online and printed story books, a free downloadable app, and resources for parents and teachers, including routine cards on how to handle everyday activities with children who have autism. Although Julia will share storylines with Sesame Street characters Elmo and Abby in the books and resources, she will not yet be a part of the long-running children’s television show.

Immediately critics noted that while autism is much more prevalent in boys than girls, the creators of this initiative chose to make this first character with autism a girl. In addition, the debate regarding how to refer to this character also appeared this week. Is she an autistic character or a character with autism? Some adults on the autism spectrum prefer that she be called an autistic girl, asserting that autism is part of the personality. Other people prefer the “person-first” language in which the disability comes last in describing the character: a girl with autism.

Yet another area of debate arose as Sesame Street chose not to address the controversy regarding the cause of autism. While some factions insist that autism is a genetic, congenital disorder, others believe that environmental factors, such as toxins from the environment and/or vaccines, trigger neurological damage that leads to the diagnosis of autism. Apparently, some critics accuse Sesame Street of siding with the pharmaceutical companies who manufacture vaccines because of their decision to avoid discussing any potential causes of autism in Julia.

Julia, however, is not the first character with a disability on Sesame Street. As early as the 1970’s, characters such as deaf actress Linda Bove, paraplegic Tarah Schaeffer, and blind Muppet Aristotle were introduced to teach children about people with disabilities. To introduce a character with autism at this time shows how prevalent a formerly rare disorder has become. While the intention to educate typical children about peers who have autism seems to have a noble motive, I hope that Julia is not simply a one-dimensional token character, the one who has autism.

Frankly, I’m a little disappointed that Sesame Street has given a girl whom they deem “amazing” a common (albeit beautiful) name. Unlike the other girls on Sesame Street, such as Zoe, Abby Cadabby, and Prairie Dawn, Julia doesn’t have a poetic name. Also, unlike her female peers who accessorize their outfits (especially Abby Caddabby who wears fairy wings), Julia dresses rather simply with no jewelry like Zoe wears. Perhaps this is to show her sensory issues; she must wear comfortable clothes that don’t bother her and no accessories that might distract her.

Apparently, Julia’s most understanding peer is Elmo, the cute and furry little red monster, who explains her autistic idiosyncrasies to other characters who misinterpret her impaired language and social skills and think she doesn’t like them. Elmo explains, “…Julia has autism. So she does things a little differently.” As if Elmo weren’t lovable enough, his concern for Julia makes him even more endearing. Perhaps Elmo is not just a sympathetic character, but actually an empathetic one. Maybe Julia isn’t the first Muppet with autism, after all. In fact, I think that Elmo was the first character with autism on Sesame Street because he displays the following traits common in autism:

Pronoun Reversal––To prevent confusing the first and second person pronouns I and you,  Elmo refers to himself in the third person, using he, him, and his, and more commonly just calling himself "Elmo," as in “’Elmo doesn’t think that’s true,’ Elmo says.”

Difficulty in Controlling Vocal Volume––Elmo has a great deal of trouble modulating his voice, talking entirely too loudly most of the time.

Poor Eye Contact and Hand Flapping––Although Elmo’s googly eyes make it difficult to discern his ability to make eye contact, he certainly exhibits the stereotypical arm flapping motions when he is excited.

Sensory Issues––Yet another indicator that Elmo has autism lies in his obvious need for sensory stimulation. The popular Tickle Me Elmo clearly craves tactile stimulation.
Obsessions and Compulsions-––In a You Tube clip, Elmo show classic autism behaviors by becoming obsessed with the "CLOSED" sign, repeating the word over and over and then showing the insistence upon following rules often seen in autism.

Putting aside the controversial aspects regarding Julia and my tongue-in-cheek assessment of Elmo, one of those who developed the character of Julia has a powerful motivation. Autism mom Leslie Kimmelman, who wrote the online storybook We Are Amazing that introduces Julia, explains when her son was diagnosed with autism more than twenty years ago, not much was known about autism. She comments that autism is “still a puzzle, and every child is affected differently.” Moreover, she explains, “So what’s the most important thing for people to know? We’re all different in some way or another––that’s what makes the world an interesting place.”

While eliminating stigmas, making people aware of autism, and helping them to understand why our children behave differently is important, we cannot lose sight of the ultimate goal: helping our children reach their full potential and searching for a cure for this disorder that attacks their nervous systems. It’s all well and good to call these children amazing, but I look forward to the day when Elmo doesn’t have to speak for Julia, and I don’t have to speak for Alex. Think what these curious and very smart children will be able to tell when they overcome the obstacles autism has presented in their lives—now that will truly be amazing!

“Everyone was gripped with great wonder and awe, and they praised God, exclaiming, “We have seen amazing things today!” Luke 5:26

Sunday, October 18, 2015

Insurance

 
Yesterday, Alex got one of those letters. Usually, I throw them away and don’t even bother to open them.  When they come from credit card companies who eagerly but unwittingly offer him a credit line, I shred them. Some of them claim to know that he surely has debt after college and probably needs to buy a car. I suppose that must be true for most young men his age. However, autism derailed his plans for college, and I, as his mother and personal assistant, handle all his correspondence. What should be a rite of passage for a twenty-three-year-old becomes a reminder that Alex’s life is not typical.

“Dear Alex, So how long has it been? Six months? A year? Three years?”

Actually, it’s been nearly twenty years since he received a diagnosis of autism, but I don’t think that’s what you’re asking him.

“When it comes to taking care of your home, you have enough to worry about. Mortgage payments, repairs, upgrades, cleaning the gutters––your home insurance is just as important to maintain. Over time, changes like additions, renovations, or even major purchases can impact your insurance needs. Alex, let’s review your policy together to make sure your coverage doesn’t have gaps.”

Don’t worry about Alex because he doesn’t worry about any of those things. Oh, and he doesn’t need homeowner’s insurance because he lives with his parents.

“It may take a disaster to show many homeowners just how big the gaps in their coverage are, and by then it’s too late. A fire, a violent storm, a thief in the night––major losses can mean thousands in out-of-pocket costs you didn’t plan on.”

Now you’re talking! We never planned on autism, and we’ve spent thousands of dollars in out-of-pocket costs. However, insurance refused to pay for most of those.
“Alex, call me or email me today so together, I can take a closer look at your policy­­––your coverage, limits, and deductibles––to help you choose the coverage you want to prepare for what might lie ahead. So call me today and let’s get started!”

That may be a problem. Alex isn’t allowed to use the phone because he thought it was entertaining to call 911 when he was younger to see what would happen. Also, we took away his email privileges as a nine-year-old when he started contacting automobile dealers about cars he liked through their online ads. As I explained to one car salesman who called asking for him, Alex was too young to drive. Of course, now he’s old enough, but he still can’t drive. Also, I’m wondering as his mother, how did you get his name and address in the first place?

Although these sales pitch letters from credit card companies and insurance companies remind me what Alex should be doing at his age and make me feel a bit wistful that he is not living the life he could be living because of autism, they also remind me that his life is blessedly simple. He is like the birds and the lilies of the field Jesus describes in the Gospels, never worrying about the things in everyday life that create stress for most people: paying off college loans, paying for cars and houses or making sure they are protected by insurance from disasters small and large that might threaten these possessions.

As Alex’s personal assistant who makes all of his phone calls and handles all of his correspondence, I am tempted to respond to the nice insurance agent who seems genuine in wanting to help ease his mind about the worries of the adult world he has recently entered.

Dear Angela, I’m not certain how you obtained Alex’s name and address, but I feel you should know that he is an adult with autism who does not have a car or a house to insure because he lacks the communication and social skills needed to hold a job. In fact, his language limitations prevent him from speaking with you directly, as he relies upon his dad and I to speak for him. Unfortunately, your company cannot provide the real coverage we need “to prepare for what might lie ahead.”

Thankfully, Alex has taught us that the only insurance we truly need in life is our faith. No matter what “disaster” comes in life––“a fire, a violent storm, a thief in the night” or even autism––God will always take care of us and provide us with what we need. Moreover, God offers “24/7 Protection” and “Personalized attention” as you claim to do, and He offers even greater savings than you tout.

While we appreciate your offer to help Alex, his dad and I can handle the everyday tasks like paying the bills and cleaning the gutters. The rest we entrust to God, whom Alex trusts wholeheartedly to see him through life and to ease any worries that might arise. Right now his biggest concern is whether the Chicago Cubs can beat the New York Mets so that they can finally go to the World Series. I doubt you can help him with that, so feel free to remove him from your mailing list. Sincerely, Alex’s mom

“That is why I tell you not to worry about everyday life––whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to Him than they are? Can all your worries add a single moment to your life?

…Look at the lilies of the field and how they grow. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, He will certainly care for you. Why do you have so little faith?

These things dominate the thoughts of the unbelievers, but your Heavenly Father already knows your needs. Seek the Kingdom of God above all else, and live righteously, and He will give you everything you need.” Matthew 6:25-28, 30, 32-33

Sunday, October 11, 2015

Satisfaction

 
A few weeks ago, Alex’s case manager told us that the State of Indiana was conducting surveys regarding the satisfaction of people who receive disability services. She explained that the survey was meant to be used in a variety of living situations—from group homes to supported living in apartments to living in the family home—which meant that some of the questions may not quite fit Alex’s situation. As his case manager, she informally interviewed him in person, and I was able to sit in on this session. We never know exactly what Alex is thinking because he doesn’t say a lot, but when he does offer his opinion, it’s usually interesting to hear his comments.

The first part of the survey dealt with his room and his privacy. For example, he was asked if he shared his room with anyone (which he doesn’t) and if his door were closed, whether people would knock before entering. Apparently, Alex recognizes that we respect his privacy by always knocking before entering his room because he answered that question with a strong affirmative. He was also asked about how much say he had in decorating his room, such as paint color, furniture arrangement, and bedding choices. He must think that he has more input than he actually does because he told her that he was able to make all of those choices for himself. While he has chosen the bedding (currently Chicago Cubs baseball sheets and comforter) and had input on the themes (baseball and NASCAR), I picked the paint color (basic antique white) and the arrangement of the furniture. Since his dad gets little say in those decisions, either, I have no problems with being assertive when it comes to home d├ęcor.

Another part of the survey addressed his access to technology and whether he needed permission to use the telephone, television, stereo, and computer. Because Alex shows good judgment in his use of devices for entertainment, we allow him to use them on his own. This is a far cry from the days when we hid the remote controls because he found it more entertaining to hurl them across the room than to use them for their intended purpose. One exception to this free access to technology is the phone, which we do not allow him to use on his own. After a few times of dialing 911 to see what would happen, Alex was banned from the phones so that he would not place false alarm calls. Even though he has not done this for many years, we still have memories of police showing up on our doorstep from his 911 experiment, and we keep the phones hidden or locked away to prevent him from trying  “the boy who cried wolf” scenario again.

A third aspect of the survey related to how many opportunities he has to go out in the community. Because Alex’s behavior has improved significantly, especially out in public, he gets to go someplace nearly every day. He was able to say that he goes to various sporting events, concerts, restaurants, parks, and stores. In fact, he was pretty enthusiastic talking about restaurants he’s frequented because he really likes dining out, which combines his love of food with his love of going places. Some more specific questions asked about the places where he shops and what kinds of things he buys for himself. The prior week, he had been several places to buy himself items, so he was able to explain with a little prompting from me that he’d bought books at Barnes and Noble, various foods at the grocery store, shirts at Kohl’s, and shaving cream at K-Mart.

Additionally, the survey asked about people with whom he interacts regularly, specifically those whom he’d seen in the past month. In addition to naming Ed and me, he included my parents, my siblings and their families (and named all of them individually), and his therapists. When he named these people who are important to him, he grinned broadly, as though thinking of them made him especially happy.

As he answered the various questions, Alex clearly showed an enthusiasm about his life. Even though autism makes his life more difficult than it should be and prevents him from participating in many activities young people his age enjoy, he is satisfied and doesn’t complain about what he’s missing. (Truthfully, he’ll occasionally whine to me that he can’t drive, but that’s really the only complaint he ever lodges.) Like the Apostle Paul, who states in Philippians 4:11, “…for I have learned to be content whatever the circumstances,” Alex has learned to be content despite the limitations autism places on his life. Instead of focusing on what he does not have or cannot do, he appreciates what he has and what he can do, and his positive outlook inspires me. Moreover, as his mom, all I want is for him to be happy, and knowing that Alex is content fills me with joy and gratitude.

“So I decided there is nothing better than to enjoy food and drink and to find satisfaction in work. Then I realized that these pleasures are from the hand of God.” Ecclesiastes 2:24