Waiting

Armed with a Sudoku puzzle and a crossword puzzle to keep myself occupied and slightly distracted, I sat in the waiting room last Thursday afternoon while Alex was engaged in music therapy. This change of setting was different for both of us, as usually Alex’s music therapist comes to our home, and I sit in a nearby room where I can eavesdrop on their session. With the therapy room at the back of the building from where I was sitting in the front of the office, I didn’t know how things were going, but I hoped for the best, praying all would go smoothly.

A few weeks ago, Alex’s music therapist apologetically told us that his company wanted clients to start having sessions in their office instead of at home. Because Alex has been doing remarkably well lately, his music therapist didn’t want to make any changes that might cause setbacks in his progress. Knowing that he was just following company policy, I reassured him that Alex would adjust to the changes and be fine. Moreover, I suggested that maybe the change in setting would be good for Alex.

Wanting to make the transition as easy as possible, the music therapist and I discussed with Alex that only the place would change; everything else would remain the same. His sessions would meet the same day at the same time, would last the same amount of time, and would follow the same procedures. I told Alex that we would take along the clipboard and notepad they use every week for his therapist to write down the songs they sing as well as a deck of cards so that they can play the game War as a reward for a good session. Also, with his therapist’s approval, I assured Alex that I would bring orange juice in a sport bottle for him to drink during the session there, just as he does at home. I suspect that he thought his therapist and I were overdoing the pep talk, as he seemed quite calm and unfazed by the change of venue. Nonetheless, his therapist told me that if sessions didn’t go well at the office, he would talk to his supervisor about keeping Alex’s sessions at home.

Sitting in the waiting room alone, I thought about how much of life revolves around waiting and wondering. Especially with special needs children, parents spend a great deal of time in waiting rooms of doctors and therapists, wondering what the professionals will tell them about their children’s conditions. In addition, parents of special needs children often wait a long time for their children to master skills, to achieve milestones, and to overcome obstacles. In short, we spend countless hours waiting for our children to get better.

When I find myself waiting impatiently, I need to look no further than Alex’s example because he has become amazingly calm about waiting. In the past week or so, he has sat patiently waiting for two Christmas concerts to begin and for two basketball games to start. Because we usually arrive early to get seats that are best for Alex, we often wind up sitting a while before the activity actually starts. Nonetheless, he doesn’t seem to mind waiting; he’s just happy to be where he wants to be.

At the end of Alex’s music therapy session, both he and his therapist returned to the waiting room smiling, his therapist giving me a “thumbs up” signal. Furthermore, his therapist told me Alex did “fantastic,” despite any concerns we had about how he would adapt. His therapist started laughing as he told me that Alex had wanted to know where the bathroom was in the building. When he showed Alex the location, opened the door, and asked if he needed to use the restroom, Alex bluntly told him, “No, it’s too stinky in there!” To Alex, overpowering air freshener would be as offensive as any bathroom smells might be, so I’m not sure what he found to be so off-putting. Nevertheless, he won’t likely be asking to use the bathroom during session.

With one good session behind him, we pray for future success as Alex continues having music therapy at the office instead of at home. However, I do have to admit that I’ll miss eavesdropping on their conversations and listening to them sing together. Nonetheless, his therapist and I are relieved and delighted and thankful that Alex handled the new situation so well and are hopeful that he will continue to make good progress there.

“Wait patiently for the Lord. Be brave and courageous. Yes; wait patiently for the Lord.” Psalm 27:14

The Gift of Waiting

“Let all that I am wait quietly before God, for my hope is in Him.” Psalm 62:5

Although I’m not by nature a patient person, raising a child who does things on his own timetable has made me learn the value of waiting. Last summer, we kept waiting for Alex to get over a bad case of thrush, a yeast infection that made his mouth and throat sore and required multiple doses of antifungal medication and repeated visits to his primary care doctor. One of the side effects of the thrush was that food tasted bad to him, and he lost his normally healthy and varied appetite. I was certain that once the thrush went away, Alex would regain his enjoyment of eating a variety of foods, but his limited appetite continued long after his mouth had healed.

During one of Alex’s appointments last summer, his doctor suggested that we could take him to a speech therapist to work on the food aversion issue. Even though we had the referral paperwork to see a speech therapist conveniently located just five minutes from our home, I didn’t feel a pressing need to make an appointment. Convinced that Alex would just wake up one day and decide to start eating anything and everything again, I felt strongly that we simply needed to wait. After all, the thrush had gone away in time, and we thought the lack of appetite would soon follow. In the meantime, I kept praying that God would give me a sign when the time was right to take Alex to the speech therapist.

About the time we would have taken Alex to the speech therapist, he developed anxiety about going places, worried that the weather was too cold, too windy, too rainy, and/or too snowy. Even places he enjoyed going were off limits because he had a fear of going out into the elements. While we were able to get him to necessary appointments, such as the doctor, he required quite a bit of convincing to get him out the door. Consequently, this was no time for starting something new, and the speech therapy referral sat in a file folder on my desk.

Fortunately, this summer, Alex seems to have conquered his fears of going places, and he has resumed the enjoyment of getting out and about in the community. Unfortunately, his appetite still has not resumed its former enjoyment of foods after nearly a year of being over the bout of thrush. A few weeks ago at an appointment with the nurse practitioner who oversees Alex’s medications, she asked us if his appetite was back to normal, and I had to tell her that his eating habits were still off but that he was managing to maintain his weight. At that point, I suddenly felt the sign I’d asked God to give me and knew that we needed to take him to the speech therapist.

When I spoke to the speech therapist on the phone, I was immediately struck by her warmth and kindness; in talking with her, I felt somehow as if I’d known her for years. She understood my concerns about Alex’s appetite and why we had waited nearly a year to make an appointment with her, due to his ongoing thrush and anxiety about going places. As she sympathetically listened, she also expressed a desire to help Alex, and we agreed to set up an appointment. However, she explained that she’d only recently started working in our local office and admitted that she didn’t know the phone number for me to call. After quickly checking, she relayed the number I needed to call to make an appointment and told me she was looking forward to seeing us. After talking with her, I was convinced we were doing the right thing to take Alex to her, and I now knew why I had waited for months to make the appointment: God had chosen her to work with Alex, and we had to wait until she was available.

A few days later, she called me again with some more questions about Alex, specifically about what kinds of things he likes to eat and what he can eat on his gluten-free and dairy-free diet. As she explained what she planned to do for his evaluation, she asked me to bring some foods that he can eat on his diet so that she could observe how he chews and swallows. Again, I was reassured by her friendly and kind nature, and appreciated her concerns that Alex be comfortable when he came to see her.

On the morning of the appointment, Alex seemed calm and eager to meet her, even getting up earlier than usual. As I filled out paperwork, he was happily reading the Forbes and Bloomberg finance magazines in the waiting room. (Clearly, God was reminding us that Alex belonged there!) When we met the speech therapist, she was just as pleasant in person as she was on the telephone, telling us how happy she was to meet us. Noticing Alex’s Chicago Cubs shirt, she excitedly told him how she’s a big Cubs fan, too; and his favorite player, Anthony Rizzo, is hers, as well. She even told him that her little boy’s middle name is Anthony, which made Alex smile. As they chatted, they also discovered they shared a love of shrimp and country singer Alan Jackson’s music. I think she was amazed by their similar tastes, saying aloud what I was thinking: “It was meant to be!”

As she examined Alex’s mouth and throat and observed him drinking, chewing, and swallowing, she did everything possible to make him feel comfortable and praising him all along the way. We were pleased that he was cooperative and answered her questions, and he responded to her warm personality, smiling throughout the appointment. In addition, we were relieved that she found nothing amiss with his ability to drink, chew, and swallow, and she believes that his food aversion is sensory in nature. She commented that the thrush made food taste bad to him, and he has continued negative associations with food. In addition, she told us that she had been thinking a lot about Alex ever since she and I had talked on the phone the first time and had trouble getting him off her mind. As a result, she had been doing research and trying to figure out the best ways to help him. Again, I felt that God had brought us to her specifically because she was clearly dedicated to helping Alex.

After describing her plan for helping Alex by gradually introducing new textures and flavors of foods, we felt confident that we had brought him to the right person. She asked Alex if he’d like to come see her once a week, and he replied without hesitation, “Yes!” which confirmed our belief that we had found someone who can help him. In addition, her schedule of availability on Mondays and Wednesdays matched ours, once again convincing me God intended specifically for her to work with Alex.

Although waiting to take Alex to the speech therapist may have seemed like procrastination on my part, I know that circumstances and my hesitation were directed by God whose plans are far better than mine. While I was waiting for the right time, God was behind the scenes, moving the right person into place who genuinely wants to help Alex get better. As we look forward to working with her, I truly believe that waiting for the right time and the right person was the right thing to do. Moreover, I believe that she will help Alex regain his appetite because God sent her to us. As Alex often says, “Wait and see!”

“Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.” Psalm 27:14

Waiting Time

 

Around here, we live by the clock, the calendar, and the schedule. For Alex, running on time, knowing what day it is, and being prepared for activities ahead are crucial to his daily existence. If not for the numerous clocks throughout our house and his wristwatch, calendars easily accessible, and his daily schedule posted on the refrigerator, Alex would become extremely anxious waiting for whatever was next. To be honest, he gets that from me, who also thrives on the comfort of clocks, watches, calendars, and schedules.

In fact, we can tell when Alex is more anxious because he will consult his beloved time keepers more often, making certain that everything is running on time and making sure he knows what’s happening next. Unfortunately, life doesn’t always go exactly as planned––people may run late, appointments may change, and a power outage might require the resetting of the electric clocks.

Sometimes reality doesn’t jive with our expectations, which can lead to frustration and disappointment. For example, as I changed our calendars from October to November last week, I realized that Alex’s loss of appetite has now lasted six months. When he began eating fewer foods in May and self-limiting his diet that had always been excellent to only a few items, I thought this phase would last only a few days, maybe a few weeks.

By the end of May, Alex still had not returned to his usual varied diet and healthy appetite, so we took him to the doctor, who diagnosed him with thrush. Certainly, the pain thrush can cause in the mouth and throat would explain Alex’s sudden resistance to eating, and we thought that the anti-fungal medication would clear up this yeast overgrowth and make him want to eat again within a few weeks.

However, this bout of thrush has been a doozy, and two more doctor visits and more rounds of anti-fungal medication were warranted. So tenacious is this yeast overgrowth that his doctor has him on maintenance doses of medication twice a week through February. Even though his mouth looks better and the secondary indicators of yeast overgrowth––dandruff and acne––have improved, we still occasionally see some behaviors associated with thrush, namely irritability and increased anxiety. Moreover, Alex still hasn’t returned to his normal eating habits.

Currently, he drinks smoothies made with Rice Dream nondairy ice cream, coconut milk, strawberries, and protein powder for breakfast. For lunch he eats applesauce and raspberry coconut milk yogurt. For dinner he eats applesauce and scrambled eggs with spinach and herb seasoning. For an evening snack he drinks a lemon Italian ice and another strawberry smoothie. While this makes meal planning for him simple since he’s basically eating the same things he’s eaten for months, we would prefer that he return to his previous diet where he ate nearly everything except popcorn. Moreover, one of his favorite things to do was to eat at various restaurants, but his limited diet has kept him from this favorite family pastime.

On Wednesday, realizing that another month has passed without Alex’s appetite improving, I felt frustrated, disappointed, and overwhelmed––three emotions I try to avoid. Why isn’t Alex’s appetite back to normal after all these months? Why won’t this thrush go away for good? Why does everything seem to take so long? What else do I need to do to make him better? As these questions raced through my mind, I could only answer the last one. I remembered the phrase I hear Alex say so often: “Wait and see.”

As Alex’s mom and advocate, I constantly seek ways to make him and his life better. However, sometimes I must remember that despite my need to control and offer helpful advice, God has this all figured out without my well-meaning help. Unlike me, God doesn’t need to read all the latest research in autism; He created the universe. While I’m impatiently waiting, God has already set the appointed time. What God has planned for Alex is greater than anything I could imagine, and healing will allow Him to show His glory. I just need to have the same trust and faith in Him that Alex does.

While six months can seem like a long time when waiting for something to happen or change, in reality, it’s not that long. Perhaps another six months will pass before Alex feels like eating more foods; we’ll have to wait and see. Perhaps tomorrow he’ll wake up and ask for his favorite food, shrimp, and devour it happily after not having eaten it for more than half a year. I don’t know. As we change our clocks back to Standard Time today, I’ll be praying that, like Daylight Savings Time, this time of illness was a summer thing to be put behind us. We will wait and see.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1

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 25^th, 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

A New Thing

 

As someone who likes to plan things down to the smallest details, I become frustrated when things don’t go as planned or when unexpected events arise, making me feel unprepared and anxious. In raising a child with autism, I have learned that I can make all the plans I want, but at the last minute, things may change suddenly to derail those plans. Consequently, life with Alex has taught me patience and flexibility. Most importantly, I have learned that God’s plans are always better than mine, and I need to allow Him to guide me so that I make the best decisions for Alex.

While waiting two and a half years for a day program that we had thought would be ideal for Alex, we kept hoping that Alex’s name would soon come to the top of the waiting list. As time passed, we sensed that his enrollment would not be imminent, which was disappointing because we thought that was the direction we were supposed to go. Instead, we worked with our case manager to develop an alternative program to help Alex make progress, adding music and recreational therapy and finding an agency that could provide respite care that better suited our needs than the previous agency had. In addition, our case manager found a new smaller day program located less than five minutes from our home for us to consider. While we were waiting for what we thought was the ideal day program, we were going to keep Alex busy and moving forward in developing his skills.

Two months ago the day program finally contacted us to let us know that Alex’s name had come to the top of the waiting list. However, we no longer felt that this program was the best placement for him now. The program we put in place for him as we were waiting, essentially our Plan B, had turned out even better than we had expected. God had led us to the right people who could help Alex. Therefore, we were not going to make drastic changes by setting aside what has been working well just so that Alex could attend the day program. After discussing all the pros and cons with our case manager and Alex’s behavioral therapist who agreed with us, Ed and I believed that turning down the offer of the day program was the right decision.

Although we were a little concerned about closing a door, we discovered that God had opened another door for us. About the same time, the day program near our home offered to teach Alex computer skills on a one-on-one basis. To start, he would go there for an hour one day a week, and he could increase the time and number of days as he acclimated to the new setting. This program sounded ideal because of its flexibility, convenience, and accommodation of Alex’s interests and abilities. However, once again, we were told we would have to wait a while to get this program started. Having waited over two years for the other program and nearly a year to get respite care started from this same agency, I decided that I could wait patiently. I knew that when the time was right, things would eventually fall into place.

Two weeks ago, the new day program contacted me, anxious to get started working with Alex on computers. The person who was arranging the details had just been transferred to the office here in town, and she was eager to get things rolling. Quickly, she arranged training with Alex’s behavioral therapist to learn how to work best with him, and she arranged a meeting with Alex and me to discuss the program she had planned for him and to answer any questions we had. While I was pleased that we finally seemed to be moving forward on this program, I was a little taken aback by how suddenly things were being put into motion after being on hold for a while.

Also, to enroll Alex, the agency needed paperwork showing that he had had a recent physical examination and a TB test. At first, this detail sent me into brief tailspin mode, as I thought we’d have to arrange for Alex to have a TB test and knew that I had no paperwork from his doctor regarding his physical this summer. After a little online research, I found that the Minute Clinic where we’ve taken Alex previously could do a TB test, which set my mind at ease. However, I then discovered that a chest x-ray could substitute for a TB test. Fortunately, before Alex had his wisdom teeth removed in November, he had to have a physical exam, an EKG, blood tests, and chest x-rays to make sure he was healthy enough for anesthesia. Because his regular doctor has reduced his hours, we took him to a new doctor for his physical exam. Fortunately, her practice offers online medical records for patients. After logging on to Alex’s account, I discovered everything I needed for the day program, and I printed out copies of the test results and doctor’s notes. Even though I had been reluctant to take Alex to a new doctor for his wisdom teeth exam, I realized that God had led us to her so that we would be able to access all the information we needed to enroll Alex in the computer class. God knew what we would need in the future and led us in the right direction.

After meeting with the young woman who will be teaching Alex computer skills and feeling positive about how nicely she interacted with him, I’m hopeful that this new addition to his schedule will work well. Of course, we always worry about how he’ll adapt to new situations and new settings, and we hope that he will put to good use the social skills we’ve worked hard to instill in him. As for Alex, he seems really excited that he’s going to be starting computer school this week. While he begins something new, we pray that everything goes smoothly and that this is one more piece of the puzzle that will allow him to reach his potential. In the meantime, we trust God, who made this path smoother by guiding and changing our plans, will lead Alex where he’s supposed to go and will give him the hope and future He promised.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19

Advent: Waiting, Anticipating, Preparing

 

This week, I have been thinking about Advent, the Christian observance leading up to Christmas, the celebration of Christ’s birth. While the source of the word Advent comes from the Latin adventus meaning arrival, these four weeks leading up to Christmas are often seen as a time of waiting, anticipating, and preparing. Often the busy season of activities, such as shopping, wrapping gifts, and decorating, distracts us from the primary focus of celebrating the birth of Christ. As I watch Alex count down the days on his various calendars to his upcoming birthday and Christmas, I notice that he primarily anticipates his favorite days of the year, knowing that I will take care of preparing for the celebrations. He trusts that I will make certain those days are as special for him as he imagines that they will be. Fortunately, he has learned patience over time, which makes the waiting easier and the anticipating sweeter.

Like Alex, I have learned patience over time, which is a lesson autism has taught me. Because Alex’s development has not followed the typical patterns and timelines, I have had to trust that milestones will eventually happen. Waiting often becomes a way of life for us, whether it be sitting in waiting rooms for doctors and therapists, waiting for paperwork to be processed, or waiting for Alex to finally master a skill. One blessing of this waiting is that when the appointed time, the answer, or the accomplishment finally arrives, the celebration is even better.

For two and a half years, Alex was on a waiting list for an excellent day program for adults with disabilities. When we first visited the facility and decided that they could offer him exactly what he needed, we prayed that we wouldn’t have to wait long before he could enroll there. However, various circumstances slowed the process, and we felt frustrated that his placement was delayed. Although we were told that he would be considered after a major construction project was completed that expanded their program, another year passed with no word that he would be enrolled. In the meantime, I knew that sitting around waiting to hear from them was wasting time, and we set out to make sure Alex was engaged in various programs that helped him develop his skills by adding recreational and music therapy to the behavioral therapy that was already in place. We filled his schedule with activities not only to keep him busy and active but also to prepare him better once the time came for him to go to the day program.

Last month, the day program for which we had been waiting called to let us know that Alex’s name had finally come to the top of the list, and he was eligible for enrollment. While we should have been celebrating an end to a long wait, we felt conflicted instead. Although the day program offers many opportunities, Alex is thriving under the program his case manager, therapists, and we have put together while we were waiting for an opening in the day program. Besides not wanting to make changes when things are going so well, after prayerful consideration and consultation with our trusted team of professionals who work with Alex, we decided that the day program we had wanted so badly for Alex at one time was not right for him at this time. Consequently, we politely thanked the agency and declined their offer, hoping that another client who has been waiting a long time like we have will be delighted for the chance to enroll. While we were waiting and anticipating, we were also preparing, and these preparations led us away from what we had originally planned to something even better for Alex.

Similarly, we spent a great deal of time waiting for respite services for Alex. After waiting several months for services from one agency, we decided that their program wasn’t ideal for what we needed. They required a minimum of four-hour blocks of respite and preferred that service take place at their respite care facility instead of in the family home. For us, the longer blocks of time and taking Alex to a place twenty minutes away wasn’t ideal, so I began searching for other options that would work better for us. After seeking other parents’ input and finding an agency less than five minutes away that offers two-hour blocks of respite care time in our home, we decided to switch respite care providers. However, our waiting was not done yet.

Although the new agency eagerly welcomed us and moved along the paperwork quickly, assigning a respite care worker for Alex did not happen as rapidly. Despite prompting from our case manager, the person in charge of finding a respite care worker failed to provide one. As we waited for months, I kept telling our behavioral therapist that I was in no hurry because I knew that the right person to work with Alex would come along when the time was right. Finally, after nearly a year, the person who was supposed to assign a respite care worker left that agency, and a new employee was assigned to Alex’s case. Immediately, she found an ideal respite care worker for Alex—after we had waited nearly a year with that agency and over a year and a half with the previous agency. As I had believed, God had selected the right person for Alex. She is about his age, has a calm and sweet personality, shares many of his interests, and understands autism well because she has family members who have autism. While we waited patiently for the wrong people to move out of the way and the right people to move into our lives, Alex was preparing by improving his social skills so that he could interact with his respite care worker and enjoy their weekly visits, which has certainly made the wait worthwhile.

Through our experiences with waiting for what’s best for Alex, we have learned to anticipate that everything will work out in the end. Sometimes plans change, and other times, we must anticipate that all the pieces will fall into place eventually. In the meantime, we keep ourselves busy and moving forward by preparing for what is to come, knowing that God has a good plan for Alex. With that in mind, we keep waiting, anticipating, and preparing for Alex to continue making good progress and to continue healing, all the while thanking God for all He has done to bring us this far.

“The Lord will work out His plans for my life—for Your faithful love, O Lord, endures forever. Don’t abandon me, for You made me.” Psalm 138:8

Eventually

“Eventually all things fall into place. Until then, laugh at the confusion, live for the moments, and know everything happens for a reason.” ~ Albert Schweitzer

Last week, on New Year’s Day, Alex asked me to take his temperature. Since he hadn’t shown any symptoms of illness, his request surprised me. However, he frequently asks me to use our home electronic blood pressure cuff to take his “vitals,” which is his favorite part of any visit to the doctor when they check his blood pressure and pulse. His interest in his vitals probably comes from his fascination with medicine and numbers. At the time, I thought perhaps he was just interested in his current medical statistics. What surprised me more was that he was indeed running a slight fever. Amazingly in tune with his own body, Alex probably knew he was running a fever before I ever took his temperature. Over the next few days, he continued to run a low-grade fever for no clear reason. Last Saturday, before the big snowstorm, we took him to the Minute Clinic to make sure there was nothing seriously wrong with him in case we were snowbound for a few days.

After checking all his vitals and examining Alex, the nurse practitioner ruled out ear infection, sinus infection, and flu. His lungs were clear, his abdomen was normal, and his glands were not swollen. Since he wasn’t cooperative about opening his mouth wide and saying, “Ahhh,” she could not rule out strep throat. However, he hadn’t complained of a very sore throat, so I thought a throat infection was unlikely anyway. While we were glad to rule out certain illnesses, we still weren’t positive why he was running a slight fever, but I suspected he either had a virus and/or was showing signs of yeast die-off because we had recently changed his anti-fungal medication. When medications for yeast are working too well, symptoms similar to flu—fever, nausea, achiness, etc.—can arise, and we had seen similar die-off reactions in the past. Nonetheless, every day several times a day, I took Alex’s temperature last week and hoped that his fever would return to normal.

Each day as I waited with anticipation that his fever would return to normal, I knew that eventually, his fever would subside. On Wednesday, exactly a week after he had first asked me to take his temperature, the digital thermometer finally registered a normal temperature for him. This past week has made me think about the power of eventually, something that has taken me over a half-century to understand. As someone who likes to plan and schedule, the uncertainties of life, such as when fevers will return to normal, make me anxious. As long as I know when things will happen, I roll along nicely, but life offers too many situations that require patience, and more importantly they require faith. Yesterday, Joel Osteen Ministries posted a quote on Facebook that really hit home for me: “God doesn’t ask you to figure it all out; He only asks you to believe.” As I told my sister-in-law yesterday, I’m sure that God probably gets tired of my “helpful” suggestions.

In raising a child with autism, I have found that most of life is waiting: waiting for developmental milestones, waiting for appointments with professionals, waiting for annoying stages to pass, and waiting to see what the future holds. While all parents must deal with these times of waiting, having a child with autism often requires more waiting than usual. Although I’m constantly trying to put together all the pieces to help Alex, I’ve found that the most important thing I can do is just believe that everything happens for a reason, and eventually everything will work out in the end. When I’m frustrated because things aren’t happening on my timetable, I look back on Alex’s accomplishments, some of which I thought would never occur. However, eventually, he learned to speak. Eventually, he learned to use the toilet independently. Eventually, he slept through the night. Eventually, he became less sensitive to sensory stimulation. Along with all these major milestones, I can see smaller steps that eventually came, as well.

Nonetheless, we continue to look toward the future and wonder what eventually lies in store for Alex. Will he eventually learn to tie his shoes? Will he eventually have a job he likes? Will he eventually live independently? Will he eventually be healed? As much as I’d like to micromanage his life, I have to take a breath when the fears of the unknown overwhelm me and just believe. Interestingly, Alex never worries about such things. In fact, he often tells us, “Wait and see.” Like his favorite animal, the turtle, Alex just keeps moving through life at his own pace, knowing that like the tortoise in Aesop’s fable, “Slow and steady wins the race.” Rarely does he get discouraged, and he sets a good example of how we should approach life—with faith and patience and without fear. Eventually, I will stop trying to figure out all of life’s mysteries and learn to live in the moment, as Alex does. Eventually.

“For all that is secret will eventually be brought into the open, and everything that is concealed will be brought to light and made known to all.” Luke 8:17

Tests of Patience

Most of the time, Alex is remarkably patient. Perhaps because he has had developmental delays, he doesn’t worry too much about waiting for things to happen, and he trusts that eventually they will occur. In fact, he’s often more patient than Ed and I are. For example, whenever we have to sit in a waiting room at the doctor or dentist, Alex never seems to mind passing the time until it’s his turn. While Ed and I check our watches, look around to see how many patients are ahead of us, and exchange looks during the wait, Alex smiles because he’s just happy to be there. Recently we took him to see American Idol winner Kris Allen in concert, and we were concerned that he would have difficulty sitting still through the opening act. As we sometimes do, we underestimated his willingness to wait for the main event. Alex’s good nature and patience were rewarded when he got to see Kris Allen, a singer whose music he enjoys. Last week, however, Alex encountered two situations that tested his patience, which meant our patience was tested, as well.

As I mentioned in my previous blog entry “Teaching Chores,” Alex has become very helpful at the grocery store, where he adeptly maneuvers the shopping cart through the aisles. On Tuesday, Ed took Alex with him to get groceries, and Alex happily pushed the cart while they shopped. Unfortunately, the store was quite crowded, and all of the checkout lines were very long. After waiting for several minutes in line, they were nearly to the cash register when the computer stopped working. The cashier tried to reboot the computer a few times but was unsuccessful, which meant that all the people waiting in her line now had to go to the end of another line. As Ed told me, most people were grumbling about having to wait already and then were even more annoyed to have their wait extended due to technical difficulties. However, Alex remained good natured, smiling all the while he waited. Even as they moved to another line, Alex seemed unfazed by the delay. However, after having been in line for about a half hour total, Alex suddenly informed Ed, “I don’t want to wait any longer.” Apparently, Alex’s patience does have limits. Uncertain as to whether Alex might have a meltdown, Ed took the wise course, guiding Alex and the cart out of the checkout line, putting the cart aside, and taking him out of the store. Fortunately, Ed’s quick movement eased Alex’s upset about having to wait, and a potentially bad situation was avoided in public. Probably many people waiting in those checkout lines felt the same frustration that Alex did; he could only be pleasant for so long before knowing that he’d had enough. At least he calmly verbalized his concerns instead of physically showing his irritation over the situation.

Last weekend, Alex decided that he wanted to get an electronic toy that would alter his voice. He’s been reading about puberty and how boys’ voices change, which is likely behind his interest in this voice changer toy. After searching online at Amazon, he found one that he thought was wonderful because it had four voices: robot, old man, boy, and kid. He was really only interested in the boy and kid voices, and he thought this device was a bargain at $9.99. I helped him order the voice changer with a gift card he had saved, and now he had another wait on his hands. The predicted delivery date was between Thursday and the following Monday. Of course, he wanted me to track the package several times a day to see where his voice changer was. Unfortunately, the package was not shipped until Wednesday, so he had a few anxious days, wondering when they would ship it. Then, they set a shipping arrival date of Friday by 8 P.M., which meant that all he could think and talk about on Friday was the delivery of that package. As each hour passed, he became more agitated, waiting for the toy to arrive. However, the promised delivery date was inaccurate, and he was not pleased that he would have to wait at least another day once he realized that he would not be getting the voice changer on Friday. Ed and I were concerned that we’d have to watch him pace and mutter about the voice changer all weekend because we weren’t certain if the shipping company delivered on Saturday. All three of us were running out of patience, heightened by Alex’s anxiety because he had been certain that he would receive the voice changer by Friday, as the shipping company had promised. Thankfully, the package finally arrived on Saturday morning. I’m not certain that any of the three of us would have had the patience to deal with Alex’s frustration had it not arrived then. Although we’re pleased that Alex is patient most of the time, his recent indications that his patience does, indeed, have limits reveals that he is making progress and may be more typical than we think. Perhaps he's just learned that the line from the Tom Petty song is true: "The waiting is the hardest part."

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that He has promised.” Hebrews 10:36