Sunday, December 27, 2015


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