May Days

Poet T.S. Eliot once wrote, “April is the cruellest [sic] month,” but I’d have to go with May instead. For teachers like me, the last month of school involves giving standardized tests and trying madly to finish teaching curriculum to students whose minds have understandably drifted to imminent summer vacation. With the stress of trying to accomplish too much in not enough time, colleagues become annoyed with those who don’t pull their share, don’t follow the rules, and don’t seem to care. Knowing that Alex is very attuned to my emotions, I try to keep any frustrations from work hidden from him, but I suspect that he senses my agitation at times. Also, every spring he seems to be a bit off, probably due to pollen in the air and atmospheric changes that occur in late spring. Needless to say, May brings challenges to both of us.

This week, the first of the month of May, Alex has been a little off. Although he doesn’t complain of any physical symptoms or show any signs of illness, he has been somewhat lethargic, preferring reclining to recreation. Usually when I offer to take him grocery shopping with me, he leaps up, ready to go because he likes going to the store. However, this week when I have suggested that we go shopping, he has suggested instead, “Daddy can go.” While I’d like to think that Alex is concerned about my doing too much and trying to shift some responsibility to Ed, I think he just prefers to stay home this week.  If, indeed, pollen is an issue, he is showing wisdom to stay indoors to avoid exposure to things in the air that bother him.

Despite not being one hundred percent, he had terrific sessions with his therapists this week. On Tuesday, his behavioral therapist heartily praised his work, saying he had a “wonderful” session, and on Thursday, his music therapist also told me that he had done very well. Nonetheless, Alex didn’t want to go anyplace this week and made excuses for not going whenever suggestions were made about going places. Yet, he seemed to be in a fairly good mood most of the time and revealed progress in unusual ways. One day, he kiddingly told Ed something implausible, and when Ed asked him if he was joking, Alex responded, “No, that’s hyperbole!” (This is what happens to children of English teachers; they use a literary term for exaggeration.) This week he also suddenly mastered using the toilet standing up instead of sitting, as he has insisted upon for all these years, and he seemed quite proud of himself for this accomplishment. Since he has been doing so well in various areas lately, we didn’t give his reluctance to go places much thought.

On Friday, we were to meet his behavioral therapist at Target, one of his favorite places to shop. After a quick lunch at the Target Café, we planned to walk around the store so that he could shop and practice his social skills at the same time. These weekly outings have been quite helpful to his development of practical skills and applying what he has learned during therapy sessions. As we ate lunch, Alex didn’t seem as enthusiastic about eating as he usually is, and he didn’t seem as excited about shopping at Target as he normally is. Nonetheless, he half-heartedly went along with the plans. When we decided to look for birthday cards for his cousins, our plans were deterred a bit because we found a woman had parked her shopping cart in the middle of the aisle and seemed oblivious that she was needlessly blocking the path. When Alex’s therapist sweetly said, “Excuse me,” the woman glared and barely moved her cart. As I could feel my annoyance rising, I fought my desire to tell her that she could benefit from learning some of the social skills my kid with autism practiced. Whether Alex picked up on my irritation or felt his own with the rude woman, he began to set his jaw in a way that I recognized as a signal he had had enough.

As I asked him what was wrong and tried to remove him from the aisle quickly, he told me that he was tired of waiting and flung his hand toward me. Putting to use my limited tae kwon do skills, I blocked his hand so that he didn’t make contact with me. Unfortunately, I didn’t grab his other hand in time, and he scratched his therapist in a rapid movement of frustration. Taking him by the arm, I quickly found a place where he could sit and calm down, and he cooperated with his therapist and me by following our directions. Fortunately, he de-escalated very quickly and apologized; unfortunately, his unacceptable behavior would have to be reported for his files. For all the weeks his behavior has been excellent, I knew that one moment would sadly mar his record of good behavior. As Ed noted in an analogy to the game Chutes and Ladders, for all the ladders Alex has been climbing with good choices and good progress, he had fallen down a chute in one moment of upset. Whether it was pollen, picking up on my work stress, or the annoyance with a rude shopper, Alex reacted in a socially unacceptable manner for one moment.

Thankfully, his therapist reacted with understanding and compassion, and she focused upon the positive aspects of Alex’s compliance immediately after the incident and his ability to calm down quickly. Having dealt with much longer and much more aggressive meltdowns with Alex in the past, I knew that this showed how far he has come. Also, his therapist noted that his behavior not only revealed progress in dealing with issues but also the clear need for continued therapy so that Alex doesn’t react in negative ways when he becomes overwhelmed. While he and I both felt bad about what had happened, she assured us that she was fine and that she understood he is still learning how to cope in a variety of situations.

Last night, Alex suddenly said to me, “I was worried.” Because he rarely initiates discussions about his feelings, I was surprised by this out-of-the-blue admission. Moreover, his issues with language make expressing himself rather difficult, especially when he is upset or when he is talking about abstract ideas. Although I wanted to press him to find out what was bothering him, I somehow sensed that he had told me all he could, and I respected his confession on its face value. As I tried to reassure him and explain that he needed to use his words to tell us when he is worried instead of using his hands, he seemed to understand. Maybe he’s ready to climb some more ladders this week; I hope so.

“Give all your worries and cares to God, for He cares about you.” I Peter 5:7

Christmas Carol

Every year between Thanksgiving break and Christmas vacation, I teach an adaptation of Charles Dickens’ classic tale A Christmas Carol with my seventh grade English classes. Like my students, I am fascinated with the ghosts and the scenarios they show the main character Scrooge to help him change his ways. After the ghost of Jacob Marley, his friend and business partner, warns Scrooge of the three ghosts who will visit him, the first ghost to appear is the Ghost of Christmas Past, complete with light streaming from his head, symbolizing that he will enlighten Scrooge by showing him important memories from his past. If the Ghost of Past came to visit me, I can imagine being shown taking little Alex to every therapy I could find for him: speech, occupational, sensory integration, visual, and cranial. In these scenes from the past, when I’m not working with Alex and trying to improve his speech, fine motor, or social skills, I am hunched over a computer or a book, researching and making sure that I know everything I can about autism and how to help him. After watching these scenes of my fretting over Alex, I imagine that the ghost would suggest to me that I often wasted time worrying instead of enjoying those early years with Alex. Older and wiser, I would agree with that assessment and vow to live with less fear and more faith so that I could enjoy days instead of enduring them.

After my journeys with the Ghost of Christmas Past, the friendly giant Ghost of Christmas Present would arrive with his glowing torch and show my life as it currently exists. The little boy Alex has now grown into the six-foot-tall young man Alex, who spends a great deal of time hunched over a computer or a book, researching and making sure that he knows everything about the world. While he still struggles with speech, fine motor, and social skills, he generally functions fairly well in many day-to-day routines. I imagine that the Ghost of Present would also show scenes of Alex doing typical things: watching sports on television with Ed, enjoying dinner at a restaurant with us, playing games with me, taking out the garbage, and listening to his favorite music, among other things. Observing Alex engaged in normal activities would make me smile and remind me that he has made good strides since those early days; moreover, he continues to make progress in various ways over time.

With the arrival of the Ghost of Christmas Future, I would empathize with Scrooge when he says, “Ghost of the Future! I fear you more than any specter I have seen.” While the future holds many uncertainties for all, as the parent of a child with autism, I worry what Alex’s life will be as he grows older. Will he be independent? Will he be happy? Most of all, what will happen when we’re not around to take care of him and to try to make his life happy, should he still need supervision and help? When my mind goes to those dark places, I want answers, just as Scrooge does in his vision of the future: “Are these the shadows of the things that will be, or are they shadows of the things that may be only?” Just as Scrooge has to face the future with hope, I have to reflect on the grace of God, who has led us through the past, guides us in the present, and will watch over us in the future. I need to have faith that God loves Alex even more than Ed and I do, and He will protect him if we cannot. As we step into the unknown, I know that He already has a plan, and I need to trust that the future—just as the past was and the present is—will be fine. And so, in the words of Tiny Tim, “God Bless Us, Every One!”

“Can all your worries add a single moment to your life?” Matthew 6:27

Fears Relieved

One of my favorite lines from the old hymn “Amazing Grace” is in the second verse: “And grace my fears relieved.” So many times through the years I have worried about Alex, only to have my fears relieved. For example, when Alex was a baby, I noticed that he had an indentation in his breastbone that I pointed out to his pediatrician. The doctor diagnosed this condition as pectus excavatum, or funnel chest, and told us that the dip in Alex’s chest was probably more of a cosmetic issue than a medical one. However, he went on to tell us that if Alex developed breathing problems from having the breastbone pressing on his lungs and constricting them, he would need surgery. Apparently this surgery is “rather grueling,” as the pediatrician explained, because it involves restructuring of the breastbone. As Alex grew, I would watch his chest rise and fall and listen for his breathing, praying that he would never need this surgery that scared me so. Thankfully, as Alex grew, the dip in his chest became much less noticeable, and his breathing was never compromised by the irregularity in his breastbone, which meant that my prayers were answered, and my fears were, indeed, relieved.

As Alex became older, I had new worries, primarily concerns about how he would react to situations that might involve pain for him. While all parents want to spare their children pain, with Alex we had to worry that he also might have a meltdown if he were hurt. The first time he needed a blood test, I was concerned that he would be upset by the needle, the pain, and the blood. However, Alex found the blood draw fascinating and never complained a bit. As the nurse commented, he handled the blood test better than many grown men she’d seen have blood tests. When Alex had his annual blood test a few months ago, a new nurse suggested that he look away, and I assured her that he preferred to watch the process. She was amazed by how unfazed he was by the test, but having seen him calmly sit through many blood tests, Ed and I were not surprised, just pleased that he was enthusiastic instead of upset. Similarly, I was concerned when Alex began losing his baby teeth, he would be unnerved about teeth falling out of his mouth and the blood that followed. I should have known that since money was involved—in the form of the Tooth Fairy’s reward—Alex thought this was fun. Later, as he lost his baby teeth and gained all of his permanent teeth, I fretted about what might happen when his wisdom teeth erupted. Having had all of my wisdom teeth removed by the age of sixteen due to crowding issues, I was concerned that Alex would need to have his wisdom teeth extracted, as well. His dentist told me that Alex could have them removed under general anesthesia, should that be necessary. Like the chest surgery, however, I prayed that Alex could avoid this ordeal. His dentist went on to reassure me, “We’re not going to worry about that, Mom, unless they’re a problem. Let’s assume that they’re not going to be a problem.” He was absolutely right; fortunately, Alex’s wisdom teeth have come in fine and have not required surgery to remove them.

One of my greatest fears concerning Alex was one I didn’t share with anyone for a long time. When I suspected something was amiss because of his language and toileting delays, I was terrified that social services would come and take him away from us. I thought that his failure to make progress might be attributed to negligence on my part, even though I knew I was moving heaven and earth to try and help him. I had read articles about children with developmental delays who were taken from their homes, and then the parents were found innocent when the error was realized regarding the real reason for the problems. Once I realized that my fear was unfounded, I was able to pursue therapies for Alex without a frantic feeling. Now that Alex is a young adult, I find myself again fighting fears about what the future will bring. While I rely on my faith, sometimes those nagging fears sneak up on me, and I have to remember all the prayers God has answered and know that He will protect Alex. As I fight my fears, the third verse of “Amazing Grace” offers me comfort about Alex’s future: “Through many dangers, toils, and snares, I have already come; ‘tis grace that brought me safe thus far, and grace will lead me home.”

“So don’t be anxious about tomorrow. God will take care of your tomorrow, too. Live one day at a time.” Matthew 6:34