Reflection

 

As December begins tomorrow, many people will begin the countdown to Christmas—if they haven’t already started—with Advent calendars to keep track of the days left until December 25^th. Since Alex loves numbers and calendars, Advent calendars hold a special place in his heart. In fact, we have two Advent calendars to count down the days: a wooden one with numbers that must be changed daily and a traditional German one with doors that open to reveal chocolate candies each day. In addition to our Advent calendars, Alex has started another countdown and has marked the days on our kitchen calendar. Like my seventh grade students who are ten years younger than he is, Alex is eagerly anticipating his birthday, and he started counting down the days a month in advance. While my students look forward to their thirteenth birthdays, marking their entrance into being teenagers, Alex is even more excited than usual about his birthday, which will be his 23^rd. Every day, he excitedly comes to tell me how many days are left until his birthday on December 16^th.

While Alex looks forward to turning another year older, I must admit that at times I would like the clock to stop. The older he gets, the more I fret about his future. When he was younger, I had goals in mind about what he would be able to accomplish by certain ages. Although some milestones eventually arrived on a delayed schedule, others still wait to be accomplished sometime in the future. While most young adults his age would be finishing college and starting careers, Alex still relies upon Ed and me for his basic needs. Certainly, he has made wonderful progress, which we appreciate and celebrate, but he still has a long way to go before he can be independent. Of course, Alex doesn’t worry a bit about life, and his unwavering faith reminds me to hold fast to the promise of Jeremiah 29:11: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” I know that God has plans for Alex, but I still wonder what the future holds for him and what his divine destiny will be.

Several years ago, I was blessed to find an online ministry known as Children of Destiny, started by Christian ministers Jack and Rebecca Sytsema. After two of their sons were diagnosed with autism, they began writing daily e-mail devotionals with scriptures to support parents of children with autism, who, like them, needed encouragement and spiritual guidance. [To view Children of Destiny, please click here.] This online ministry has grown and helped many people during its twelve years of existence. Over the years, their devotionals have repeatedly reminded me to have faith when times looked bleak and to praise God when prayers were answered. Describing their family’s life with autism, the Sytsemas note, “While each intervention has helped them [their sons with autism] come to new levels of success, we firmly hold to the belief that the most powerful intervention we have brought into our sons’ lives has been to give them over to God and allow Him to order our steps.” Indeed, that surrendering our children to God proves the hardest, yet the most important step of faith we parents of special needs children must do. Moreover, the Sytsema’s declaration that these children with autism do have a special destiny, despite what limitations autism has placed upon them, reminds us how much they have to offer the world.

Last week, after I posted my blog entry about Alex’s positive interaction with a kind grocery store clerk, I received very positive feedback about that story from friends and family, who were touched by the sweetness of Alex and his “new friend.” While I never want Alex to be a bother to other people, I sometime forget what a blessing he can be to people other than Ed and me. We see the goodness and kindness behind his awkward social skills, but we wonder if others recognize his sweet soul, as well. After reading the blog entry, my cousin Amy reminded me in a loving note that Alex does, indeed, have much to share with others: “I hope you know what a blessing Alex is and the joy he brings to others. I say share your sweet wealth.” Similarly, another autism mom friend thoughtfully wrote to me in response to the story, “Alex touches more lives than he will ever know.” Their encouraging words made me realize that Alex is fulfilling God’s destiny for him. Maybe his job right now is to reflect God’s love through his joy for life, his love for people, and his trusting faith and abiding hope that everything will be all right in the end.

As Alex happily counts down the next sixteen days until he turns twenty-three, I need to put aside the disappointments that his life hasn’t turned out as I had planned and to share in the joy he finds in the simple things that others in their busy lives can often miss. Moreover, I must stop thinking about the things Alex can’t do yet and remember that God has His own countdown that I must trust will be the right time for everything. In the meantime, God keeps Alex busy with His own tasks, those far greater than I would have assigned, and certainly much more valuable because they truly reflect God’s glory.

“And all of us have had that veil removed so that we can be mirrors that brightly reflect the glory of the Lord. And as the Spirit of the Lord works within us, we become more and more like Him and reflect His glory even more.” 2 Corinthians 3:18

The Kindness of Strangers

 

“Good Ways to Get People’s Attention” is one of the social stories Alex’s behavioral therapist has used to improve his social skills. Because words don’t come easily to Alex, he may resort to inappropriate behaviors, such as suddenly grabbing someone’s arm to get that person's attention. Instead, we needed to teach him socially appropriate ways to interact, especially since his stature at six feet tall could make him appear threatening to those who don’t know him. Not only does he read the story aloud repeatedly, but Alex also practices the skills detailed in the story so that he knows how to act when he is around other people. Specifically, the social story tells him that he can wave, raise his hand, shake hands, give a high five, or say, “Hi” or “Excuse me.” After repeating this exercise many times, Alex has made great progress, as we have seen him do what he has been taught, tapping my shoulder when we are in the car, raising his hand during a meeting with his team of support staff, and offering a high five to his therapists when they come to see him.

Last evening, as we were shopping at the grocery store for Thanksgiving dinner items, Alex put these skills to good use and was rewarded for his efforts. After collecting our list of groceries, we headed for the self-check line and were greeted warmly by the store clerk who was supervising the self-check registers. Apparently, Alex was impressed with her friendliness because he suddenly left our cart of groceries that he had pushed through the store, walked over to her, smiled, and tapped her gently on the shoulder, just as he had been taught in the social story he knows by heart. However, he didn’t know what to say to her once he had her attention, so he just smiled.

Even though he had done nothing wrong, Ed and I immediately sprang into action, not knowing how she might react to his gesture and not wanting him to bother her. Ed apologized and led Alex back to the grocery cart, and I noticed that the clerk had followed them. I asked Alex, “Did you want to shake her hand?” He lifted his left hand (as he always does, offering the wrong hand for a handshake), but she took his right hand in hers, giving him a nice handshake, which made him smile and seemed to please her.

Then Ed, still trying to smooth over a situation that could have been awkward, told Alex that the next time, he could just say hello instead. The kind woman then put her arm around Alex’s shoulder and said sweetly to him as though they were old friends, “That’s okay, anytime you see me, you can tap my arm. You are so precious.” What could have been an uncomfortable incident became a pleasant one because she reacted very kindly, understanding that Alex intended no harm; he just wanted to interact with her.

Before we left, I thanked her for being so kind to Alex, but she assured us that it was her pleasure, wished us a Happy Thanksgiving, and made a special point to say goodbye to Alex, who was still smiling. As we took the groceries to the car, I felt teary that a stranger could be so kind to my son and make him so happy. Although I suspect she recognized that Alex has autism, she responded with warmth and kindness instead of discomfort and avoidance. I hope that she was as blessed by this brief encounter as we were.

As we celebrate Thanksgiving this week, I’m thankful for the many blessings in our life:  our faith, family, and friends that sustain and bless us, the healing we have seen in Alex, and for the kindness of strangers who take the time to interact with Alex. To the pretty lady at the grocery store with the warm smile and kind heart, thank you for making Alex’s day. You should know that Alex has an innate sense for people who are especially nice, and he is drawn to them. You must be one of those people because he felt the need to reach out to you and get your attention. By responding to him with genuine affection, you have gained a new friend. That night after you called him “Precious” and told him that he could tap you on the shoulder whenever he saw you, he asked what your name was. Overwhelmed by my fear of your reaction to him as well as by your sweetness to him, I didn’t think to ask your name. However, we hope to see you again, and you should know that a young man with autism now includes you in his prayers as his “new friend” whom he wants God to bless. Indeed, I pray that you will be blessed for the kindness you have shown. While you dismissed it as “no problem,” to us it meant a great deal, and we are thankful.

“…And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8

Decisions, Decisions

 

Last evening during a Moms’ Night Out with two of my younger friends, who are currently on maternity leave, we found that the majority of our conversation revolved around our children. With our kids safely at home with their fathers, we were relieved of mommy duty for an hour and a half, but still foremost in our minds and hearts was the well being of those children. We discussed feeding, sleeping, and keeping our kids healthy, along with the dilemma of returning to work or not. Our shared devotion to our children binds our friendship now even more than our initial bonds of a shared workplace. We can support and understand each other because we are in similar situations, and a primary concern we share as mothers is making the right decisions for our children.

Of course, my friends are new to motherhood and responsible for the care of infants while I have been parenting for nearly twenty-three years and am still responsible for an adult, which brings challenges not unlike those my friends are currently facing. Like them, I must make sure Alex eats properly, gets plenty of sleep, and gets proper medical care. Most parents of young adults have relegated these decisions to their independent children, but autism impairs Alex’s ability to make important choices on his own. Sometimes I must even guide him in rather simple ways, such as telling him that bologna, orange juice, and cookies are not a good snack combination, especially right before bedtime.

On one hand, I’m glad that we still have the power to protect Alex that parents of other children his age do not. He can’t drive a car, so we don’t have to worry about him driving recklessly. He isn’t in college, so we don’t have to be concerned as to whether he’s keeping up with his studies or not. He doesn’t date, so we don’t have to worry about someone breaking his heart. While keeping him safe is nice, I wonder if he misses the rites of passage other people his age enjoy.

On the other hand, since Alex can’t make important decisions for himself, we feel a tremendous sense of responsibility to make the right choices for him. In true concerned mother fashion, I often find myself questioning if we’re doing the right thing. In some aspects, I feel totally confident, such as managing his disability funds. Appointed by Social Security and the state as Alex’s authorized representative, I allocate his money as carefully and fiscally responsibly as I manage our own, finding the best deals and never wasting a cent. Legally assigned by Alex as his health care representatives, Ed and I make sure that Alex gets the best medical care to keep him healthy, just as we always have throughout his entire life.  However, when it comes to deciding what support services he needs, I find myself weighing all the options, trying to determine what is best for him, hoping to make him more independent in the long run.

Indeed, realizing Alex’s need for greater control of his own life, I have tried to give him options so that he can learn to make decisions. Even in seemingly small choices such as whether to wear the blue shirt or the red one, what to eat for lunch, or what to watch on television, I want him to communicate what he wants. When presented with a choice, trusting my judgment, he will often ask, “Which would be best?” After reassuring him that no answer is wrong, he can usually pick one of the choices.  Sometimes he tells us that it’s “a tough decision,” weighs his choices, and then decides. However, I understand his dilemma because I often wonder myself which would be best.

In the times when I doubt myself, I have to look at the successes to remind myself that we do what’s right for Alex. After his recent oral surgery went amazingly well—much better than anyone could have anticipated—we looked back on all the steps we made along the way to get to that successful recovery. Not satisfied with the recommendation by Alex’s dentist to wait to remove his decaying upper twelve-year molars until they were bothering him and by his recommendation of an oral surgeon with a poor reputation, I decided to take him to my dentist, whom I trust completely. He recommended removing Alex’s wisdom teeth at the same time and referred us to an experienced oral surgeon. The skilled oral surgeon not only successfully removed the teeth that were causing problems, but he also took various precautions to prevent complications, namely pain, bleeding, swelling, dry sockets, and infection. Consequently, Alex came through a rather complicated procedure without any problems. Moreover, he was deemed a “great patient” by the oral surgeon’s staff. Because everything went smoothly, Ed and I were confident that we had made all the right decisions for Alex.

When we must weigh options for Alex, Ed and I discuss all the potential benefits and problems, and we consider how well we know Alex and how he will likely respond. Along with relying upon our own careful considerations, we rely even more heavily upon prayerful consideration. We know that God has a plan for Alex, and when we aren’t certain what is best for him, God knows. In times when I find myself puzzled as to what choices we should make, I pray for guidance, and we have an amazingly clear sense of what we should do. That Ed and I always reach the same conclusions, guided by our shared devotion to Alex and our shared faith in God, makes moving forward with these choices less daunting.

This week, Alex’s quarterly meeting with his support team convenes, and we will discuss plans for the next three months regarding his services. In preparation, Ed and I have considered various available options, Alex’s progress and his current state, and what we believe will help him most. At this point, we feel that the best way to move him forward is to make no changes because he is doing well with the combination of behavioral, recreational, and music therapies, along with spending one afternoon with his respite care “friend,” and with the various family outings Ed and I plan for him. While others may question our choices, we know that our primary motivation is doing what’s best for Alex, and we also know that God, who loves Alex even more than we do, guides our decisions. As a result, we feel confident in knowing “which would be best.”

“Wise choices will watch over you. Understanding will keep you safe.” Proverbs 2:11

Healing

 

Last week began in trepidation and ended in celebration. Last evening as the three of us had a snack at one of our favorite restaurants with Alex happily downing fries and orange drink, Ed commented that we never would have guessed that he would be doing so well three days after oral surgery. Despite having eight teeth—four wisdom teeth and four twelve-year molars—removed on Wednesday morning, Alex has been remarkably congenial and energetic. Prior to the surgery, Ed and I thought that, at best, Alex would want to lie in bed for several days to recuperate. Our greater fear, though, was that he would be in such pain that he would be nasty and possibly even aggressive, angry that we had put him through a procedure that made him suffer. However, God watched over us, brought Alex safely through the surgery, and spared Alex and us pain, a true blessing. Moreover, with the removal of those damaged and impacted teeth, we are seeing significant improvements that we never anticipated.

Although Alex has never complained about his back teeth bothering him, his dentist told us in August that he needed to have the upper twelve-year molars removed because they were decayed. When we took him to our dentist for a second opinion, x-rays indicated that his impacted wisdom teeth were damaging the roots of the twelve-year molars. Consequently, our dentist recommended removing all eight of those back teeth at the same time, and he referred us to an experienced oral surgeon, who concurred with that treatment plan. The removal of the twelve-year molars created openings to remove the wisdom teeth, which were totally “bone impacted.” In addition, he felt this oral surgery should be done at an outpatient surgery center with an anesthesiologist putting Alex under general anesthesia. While we felt bad that Alex would have to undergo this procedure, we agreed that it must be done and moved forward to schedule the surgery. As Alex pointed out to me, this was his first surgery, which shows how well God has protected him in his nearly twenty-three years.

After reading through all the possible complications and things that could go wrong during the oral surgery (including pain, bleeding, infection, jaw fracture, permanent numbness, and even death), I signed the consent forms as Alex’s legal health care representative and prayed that none of these potential problems would occur. However, I also remembered my own wisdom teeth removal when I was in my teens as a rather unpleasant experience with pain, swelling, and generally not feeling well for about a week, none of which I shared with Alex, not wanting to incite his anxiety. Because Alex has had positive experiences with doctors and dentists and lab work, he views them as a grand adventure, and this was no different. Even having to get up in the middle of the night, since we had to leave at 4:00 A.M to register at 4:30 A.M. for his 5:30 A.M. surgery, didn’t faze him. He simply told me to wake him up at 3:30 A.M. by reminding him, “It’s twelve hours to Jeopardy!” When I fulfilled his request, he rolled over, gave me a sleepy grin, and awakened without any complaints. We were off to a good start.

In the pre-operation room, two sweet nurses helped us prepare him for surgery and even let him weigh himself when he asked if they had a scale. When he had an IV inserted, he calmly handled the procedure and watched as the nurse put the IV in place. When she injected medication to numb his hand—the worst part of the process, she warned him—he began to wince, and I told him to pretend he was blowing out birthday candles, a trick I learned along the way to distract him and ease pain. He complied, and all was well. The nurse commented that he was an excellent patient, which made us quite proud, but we were even prouder of how calmly Alex was handling himself before surgery.

As Ed and I sat in the waiting room during the hour-long surgery, I alternated between praying and trying to read and distract myself from worrying about Alex. At one point, I looked across the room of the Catholic hospital to see a plaque with a cross that read, “God always keeps his promises.” This reminder comforted me and gave me hope that Alex would, indeed, be safe in God’s hands. I also remembered that many family members and friends were praying for us. Thankfully, Alex came through the surgery beautifully with no complications, and we were glad to find out that Alex was calm both before and after the surgery. When we went to see him in the recovery room, he had gauze stuffed in his mouth and was sleepy, but his coloring looked quite good, and he seemed no worse for the wear. In fact, he kept trying to tell us something. The nurse, who kept commenting on what a sweet boy Alex was, said that he kept repeating some phrase that she couldn’t decipher with all that gauze packed in his mouth. Because of his articulation issues, Alex’s speech isn’t always clear on good days, but the swollen mouth and gauze made understanding him even trickier. The kind nurse, Ed, and I kept trying to figure out what Alex was telling us with no success. Fortunately, he wasn’t upset that we didn’t understand, and when we were wrong in our guesses, he just calmly repeated the mumbled phrase again. Finally, I figured out what he wanted. “Bologna and Thousand Island dressing?” I asked. He nodded and grinned as much as that gauze allowed. After having all those teeth removed, he was thinking about a strange food combination, probably because he was hungry from pre-surgery fasting. I told him we’d have to wait and see how he was feeling before he could eat anything, and that satisfied him.

Once we got home, he seemed remarkably alert and pleasant, even though he had been awakened in the middle of the night, had been under anesthesia, and was given medicine to numb his jaw. We thought he would sleep most of the day, but he wanted to stay awake and talk to us. Again, the gauze packs muffled his speech, so I made him a chart with the letters of the alphabet, numbers from 0-9, and a happy face and sad face to let us know how he was feeling. His flying fingers quickly spelled out what he wanted to tell us, and it was hard for us to keep up with him. At one point, he noted that his voice was raspy, and I explained that they had put a breathing tube down his throat when he was asleep. He grinned and told me in that raspy voice that he sounded “like Bob Dylan.” Nonetheless, he was chatty all day and never once pointed to the sad face when we asked him how he was doing. We were amazed and grateful he was doing so well and was so cooperative about keeping the ice packs on his cheeks and the gauze packs in his mouth.

While we thought he might be more swollen and less pleasant the following day, he surprised us by looking quite good and acting as though nothing had happened, even though the pain medications had worn off. Although he never complained about feeling bad, we gave him over-the-counter pain medicine to keep him comfortable along with the antibiotics the doctor had prescribed. Apparently, his mouth didn’t bother him too much because his appetite was excellent. Besides looking and acting as though he felt fine, Alex was unusually chatty. Moreover, his speech suddenly seems much better and clearer. Even though Alex never complained about those teeth, maybe they have bothered him for a while and made talking more difficult. Perhaps this surgery that we feared would make him temporarily worse has been the turning point to making him permanently better. Perhaps, this is the beginning of the healing that we have prayed for God to give Alex. After seeing how well Alex has come through a rather difficult procedure, we are thankful that God has spared him pain and that Alex is recovering amazingly well, even better than we could have ever hoped or imagined. Certainly, as I was reminded this week, God keeps his promises.

“Heal me, O Lord, and I will be healed. Rescue me, and I will be rescued. You are the one I praise.” Jeremiah 17:14

Worthy

 

In previous blog entries, I have mentioned the various roles I play as an autism mom, including teacher, therapist, nurse, pharmacist, administrative assistant, and coach. No matter what role I assume, I have one goal: to make Alex’s life better. As we have been preparing for his upcoming oral surgery this week to remove his twelve-year molars and wisdom teeth, I realize that I have another role in his life. That role is to be his agent, promoting his strengths to those who may be working with him and convincing others that he, indeed, is worthy of their kindness and compassion.

When Alex was little, he had an endearing charm that instantly drew people to him. As he has gotten older, his fully grown body with his long arms and legs has an awkwardness that can be off-putting to those who don’t know him. His difficulties with keeping enough personal space distance can seem threatening because he is so tall. In addition, he can be self-conscious at times, speaking quite softly, as though he knows that his speech can be difficult to understand. Moreover, eye contact still proves difficult for him. As a child, he had less difficulty with eye contact, and when he did look away, it appeared as shyness. As an adult, this lack of eye contact can make him appear aloof or disinterested. In essence, Alex often doesn’t make a good initial impression.

For this reason, I want his appearance to be appealing. Thankfully, he enjoys being groomed and allows me to cut his fingernails, to keep him clean shaven, and to cut and style his hair. His treasured daily baths keep him immaculately clean, and we make sure his teeth are always brushed. Between soap, shampoo, shaving cream, toothpaste, deodorant, moisturizer, and clean clothes, Alex smells good. Also, he trusts me to choose his clothes, and I make sure that he is dressed neatly and stylishly. Moreover, when Alex is in public, Ed often reminds him to put his hands at his sides or to pick up his head so that he doesn’t call negative attention to himself as he walks along. Although we love Alex just as he is, quirks and all, we know that the world may not be as accepting as we are. Therefore, we want him to look his best and do everything we can to help him with his appearance because he can’t do it himself, and frankly, he doesn’t really care.

When we have our quarterly meetings with Alex’s “team”—his case manager, behavioral therapist, music therapist, and representative from the agency that provides respite care—Ed frequently takes on the role of proud dad, telling Alex’s accomplishments and letting everyone know how smart and clever Alex truly is. When a child has a disability, discussion often revolves around the weaknesses and what that child can’t do, but we also want others to know our child’s strengths. Fortunately, those who work with Alex soon discover those strengths and can see through the obstacles to the lovable and smart young man he really is. However, Ed and I  must “sell” those strengths until Alex can display them himself.

The process of getting Alex’s oral surgery arranged has required several phone calls and appointments, where Alex has met and interacted with new people. After Alex’s dentist recommended having teeth extracted, we took him to our dentist for a second opinion, where Alex had a panoramic x-ray and examination and cooperated with the dentist and assistant nicely. He also did well with the oral surgeon and his assistant for the consultation appointment. Last week, he had a physical exam with a new doctor, along with blood tests, a chest x-ray, and an EKG, which went smoothly. This week, I spoke with a nurse at the outpatient surgical center where he will have the teeth removed. In each of these experiences, Ed and I found ourselves introducing Alex by putting the autism out there first and then promoting Alex’s strengths. “He has autism, but he loves coming to the dentist.” “He has autism, but he’s always very good about having blood tests.” “Other than autism, he’s very healthy and normal.” “He has autism but is usually very cooperative. We will help you any way we can to make this easier.” Essentially, we don’t want anyone to dismiss Alex as less than he is because he has autism. We have seen him rise to the occasion, and thankfully, he rarely disappoints us in those situations where we need him to comply. Hopefully, he may even change some people’s stereotypes of autism as they remember a nice young man whose parents said he would do well, and he did.

In Jeremiah 18, an allegory is told in which the prophet is told to go to the potter’s house. “So I went down to the potter’s house, and I saw him working at the wheel. But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him.” (Jeremiah 18:3-4 NIV) In this symbolic story, the potter is God who can take the marred and make it good and useful. Despite the marring that autism causes, God has created Alex with strengths that can overcome the weaknesses. As his parents, we want others to recognize how much he has to offer, and we gladly push aside the obvious hindrance so that others can realize all the good that lies underneath.

“But you are not like that, for you are a chosen people. You are royal priests, a holy nation, God’s very own possession. As a result, you can show others the goodness of God, for He called you out of the darkness into His wonderful light.” I Peter 2:9