Waiting for a Change

“At the time I have decided, my words will come true. You can trust what I say about the future. It may take a long time, but keep on waiting––it will happen!” Habakkuk 2:3

About a week and a half ago, we noticed Alex wasn’t acting like himself. Instead of being good-natured, he was irritable. Instead of being logical, he was irrational, jumping to ridiculous conclusions. In addition, his OCD, which is usually controlled well by medication, was heightened as he kept repeating the same questions and phrases. From years of experience, Ed and I recognized these telltale behaviors as a likely sign that Alex once again had yeast overgrowth in his digestive system, which affects his behavior negatively.

Fortunately, his doctor understands the impact yeast has on Alex’s behavior and trusts our diagnostic skills in this area. After I sent his doctor a brief email describing our suspicions and requesting a refill of antifungal medication, he responded quickly and assured me that he had sent a prescription to the pharmacy. When I went to pick up the antifungal, I was pleased and surprised to discover that his doctor had authorized enough refills to last a year. Clearly, he recognizes the negative effect yeast overgrowth has on Alex, and he trusts our judgment in giving medication as needed to help Alex heal.

As we have found from experience, the antifungal medication makes a difference quickly. Within an hour, we see Alex become more docile and less edgy. Within two hours, he’s content and calm, and the OCD behaviors seem to disappear. Because he responds so favorably to the antifungal, our suspicions regarding what made him irritable are confirmed. Since we have dealt with these infections repeatedly for years, we know what to expect and are always grateful that the medicine works fairly rapidly to make Alex feel better. Waiting is easier because we don’t have to wait long to see changes, and we are confident he will get better.

A few days ago, Ed came home from work grimacing and holding his left hand on his lower back. Some Google searching had allowed him to diagnose himself with his first kidney stone. Despite my suggestion to go to the emergency room that evening, he decided to try to treat the ailment himself by drinking water and taking over-the-counter pain relief medicine. The next morning, when the pain was getting worse instead of better, I made an appointment for him to see his doctor, who confirmed that he did, indeed, have a kidney stone. Even though his doctor prescribed various medications to help the nausea and pain as well as to help the stone pass, Ed was suffering from what he described as the worst pain he’d ever experienced in his life.

At that point, we knew he needed to go to the emergency room, but with Alex, plans always need to be made carefully so that he doesn’t get upset and overreact. A quick phone call to my parents, who thankfully live only ten minutes away, solved the problem. My dad, who has dealt with kidney stones over the years and could empathize with Ed’s pain, would take him to the ER while my mom and I stayed home with Alex to keep him calm. As we waited, we prayed that Ed wouldn’t have to wait long for his pain to ease.

About an hour later, my dad called to tell me that everything was going well and that all of the medical staff had been kind and helpful. In fact, the doctor taking care of Ed had suffered from kidney stones, too, so he could relate to how painful they are. When the nurse gave Ed intravenous pain medicine, she assured him that he would feel much better within twenty minutes. While that intensely painful waiting time must have seemed much longer, the nurse’s prediction was accurate: Ed’s pain level dropped from the highest rating of 10 down to 1 in twenty minutes. Moreover, as the doctor had predicted, Ed was relieved to be able to pass the stone last night fairly painlessly without any further medical intervention. Just as with Alex, the right medical treatment makes all the difference in the world, and experiencing positive changes makes waiting for complete healing bearable.

While I hate that Alex and Ed had to suffer needlessly, both of these experiences show how things can change suddenly for the better. So much of life is spent waiting and wondering when things will change. Many times I have sat in waiting rooms, wondering how much longer before my turn would arrive or even if they had forgotten about me. The longer I waited, the more I became frustrated and began questioning if I should just give up and leave. Nonetheless, the waiting eventually ended, and my turn always arrived, despite my lack of patience.

Similarly, the longer we deal with Alex’s issues related to autism, I can become discouraged waiting and wondering if things will ever change. However, experience has taught us through the years that things do get better in time. We wondered if he would ever sleep through the night, and in time he did. We began to lose hope that he would ever learn to use the toilet independently, but after years he finally did. We questioned if he would ever be able to carry on a conversation with us, and now some of our sweetest moments are spent chatting with our fascinating and entertaining son. Somehow the longer time passes, we think these changes for the better are less likely to happen, but we continue to wait for the appointed time God has designated for these milestones.

Thankfully, I was raised by loving parents whom I can always trust for help, support, and comfort, so I know that I can also trust my heavenly Father to take care of my family. When my parents told me the other evening that they were on their way to help us, I had no doubt that everything would be all right. Knowing that help is coming makes the waiting easier to take. Similarly, I can trust that God’s help is on the way, so I don’t need to despair. If we didn’t have to wait in life, there would be no real need for faith. Moreover, the longer I live, the more of God’s goodness I see, fulfilling His plans, while making the waiting less wearisome and more worthwhile, as I know that healing will eventually come in His perfect timing.

“I wait for the Lord, my soul waits, and in His word, I put my hope.” Psalm 130:5

Dealing with Detours

“Detour, there’s a muddy road ahead. Detour, paid no mind to what it said. Detour, oh, these bitter things I find. Should have read that detour sign.” ~ “Detour” by Paul Westmoreland

In last week’s blog entry, I described how Alex became agitated during music therapy and responded by pounding on the therapy room door. Essentially, he was probably trying to communicate that he wanted to get out of that room. He was overwhelmed by sensory stimuli––nearly falling out of his unsteady chair and adapting to a new fan––along with having to wait while listening to others’ concerns about the office bathroom being out of order. After redirection to use his hands to play bongos instead taking out his frustration on the door, he was able to calm himself and finish the session successfully.

Although I could have dismissed that situation as an isolated incident, I know Alex well enough to be certain that he would have trepidation about the next music therapy session. Not wanting him to use the door for a percussion instrument again, I considered ways to prevent a repeat performance. As Alex’s parents, Ed and I have always tried to smooth his path in life by removing any obstacles we can and by preparing him for those we cannot remove. However, we also know that life often presents sudden detours that he may have to endure.

When Alex was younger, he would become anxious if he saw a detour sign along the road. He knew this meant that his beloved routine routes would change, and that made him fret. To ease his concerns, I would remind him of an old song my dad likes to sing. From the back seat of the car, we would hear Alex imitating Grandpa by singing in a deep voice, “Detour, there’s a muddy road ahead…” Somehow singing about the detour calmed his fears and made him less worried about having to change course.

If a simple song could help him cope, I knew that Alex could learn other ways to deal with situations that take him by surprise. During his behavioral therapy session last week, we discussed with his therapist the circumstances that led up to Alex getting overwhelmed at music therapy. While his therapist sympathetically understood why Alex had become upset, she also helped him to understand that he can control his reactions when he feels out of control. After working with Alex for more than five years, she not only knows him well, but she also knows how to bring out the best in him.

As she went through the chain of events that led up to his upset, she offered him ways to keep himself calm through deep breathing, repeating positive affirmations (Alex’s favorite: “Everything will be all right.”), and asking for help. By asking him questions, she was able to discern what was really bothering him. No, the new fan did not upset him; in fact, he liked it. Yes, he was upset about the chair tipping and worried that he might fall. In addition, she discovered something he had not told me: the room was too hot. Since Alex is very sensitive to temperature changes, that alone could have set him off.

After getting input from Alex, she and I worked with him to brainstorm ways to make the next session better for him. Since the heat seemed to bother him, I told him that he would wear a short-sleeved shirt instead of a long-sleeved shirt for the next session. In addition, since he didn’t like having to wait, we would plan to get there right before the scheduled time instead of a few minutes early. Finally, his therapist, who is familiar with the music therapy office from having meetings there, suggested asking his music therapist to bring a chair from the conference room. She remembered that those chairs were sturdier than the folding chair in the session room and less likely to tip. After talking with her, both Alex and I felt more confident about going to the next music therapy session.

Because Alex’s music therapist has also worked with him for more than five years, I knew that he would be flexible about making changes to help Alex. After sending him an email explaining Alex’s concerns and the potential solutions we had brainstormed, he immediately called me on the phone and enthusiastically agreed with our ideas. Moreover, he had a better suggestion: instead of moving a chair from the conference room, he would move Alex’s sessions to the conference room. Since that room is larger and has a table for Alex to set his drink, as well as sturdier chairs, he thought the conference room would be a good change. If the new setting did not seem to help, he kindly offered to resume providing Alex’s therapy sessions in our home.

After telling Alex about the new venue for music therapy, he seemed a bit nervous about the change. However, I explained the advantages of the conference room, and he was willing to try. Just to make sure we were aware he wasn’t thrilled about this detour, he waved “the claw,” a gesture he uses to let us know he’s not happy by lifting his arm, bending his wrist at a 90 degree angle, and shaking his hand in the air in a way reminiscent of the 80’s “Walk Like an Egyptian” dance. After waving “the claw” once at me and once at his music therapist, he was cooperative, and his therapist described the session as “fantastic” with no other negative behaviors. Alex had detoured into the conference room and decided the new route was more scenic than the old one. By being understanding and willing to accommodate Alex’s sensory issues, his therapist was rewarded with a cooperative client.

Since autism and anxiety make navigating life more difficult for Alex, he relies upon the adults he trusts to help him cope with circumstances that make him nervous. We are certainly blessed to have a wonderful support team of professionals who not only sympathize with our concerns but who also actively seek ways to make Alex’s life easier and to teach him how to deal with the unexpected situations that make him uneasy. Sometimes, something as simple as changing setting can make a difference, assuring Alex that, indeed, everything will be all right.

“Show me the right path, O Lord; point out the road for me to follow.” Psalm 25:4

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

"All Is Calm; All Is Bright"

 

I don’t like change; in fact, most of the time I’m perfectly happy staying in a familiar rut. Sometimes, God has to give me multiple signs in order for me to do something different, to step out of my comfort zone. Recently, a series of small jolts pushed us to make changes in Alex’s best interests, and so far, the results have indicated that doing something new was absolutely the right decision.

About two weeks ago, when I went to pick up Alex’s medications at the pharmacy, one of them mysteriously was not with the others. The pharmacy technician was puzzled as to why it was missing, but assured me she would check on it and felt confident it would arrive that afternoon. Later in the day, I received a call from the pharmacy that the medication still had not arrived, but they would order it again and hoped it would be ready for pick up the following day. Even though I was confused about the delay on the arrival of the medication, I wasn’t that concerned because I still had a week’s worth.

The next afternoon, I had a message on our answering machine from the pharmacy that not only had the medication still not arrived, but it was also on backorder, and they didn’t know when they could get it. Now I was getting nervous. I called the pharmacy to find out more, and the pharmacy technician told me the company that manufactured that particular drug had stopped producing it. A Google search after I got off the phone gave a hint as to why they suddenly stopped manufacturing it; they had to recall several batches of this time-release drug because apparently it was not properly releasing the doses throughout the day.

When I asked the technician if they could get the medication from another company, she told me that it was the only company who made the drug. Knowing that was not correct because in the past Alex had taken the medication made by another manufacturer, I told her there was another company, but she insisted there was not. (Another Google search confirmed that I was correct as I found the name of the other company.) She did tell me another store in a nearby town had some, but we would have to transfer the prescription and go to pick up the pills ourselves. Not happy with the news she had given me, I nonetheless thanked her for the information and hung up the phone to ponder our options.

At this point, I was verging into panic mode. What were we going to do if we couldn’t get this medication for Alex? I decided to go to the pharmacy the next morning and talk to a pharmacist in person and explain my concerns about finding the medication soon. The pharmacist understood my concerns and immediately tried to track down Alex’s prescription. She scoured the warehouse records, tried to order more, and even called a competitor’s pharmacy to see if they had any in stock. In addition, she passed along the information to the pharmacy manager, including the name of the other company that manufactures the drug, which I had given her.

The next day I received notification that Alex’s prescription had been filled, which came as a huge relief. When I went to pick up the pills, there was a note that they had gotten them from the store in the nearby town––saving us a trip there––and that they were still trying to track down this medication from their warehouse. While I was delighted to have enough pills to administer twice a day for a month, we still don’t know if the pharmacy will be able to get more next month. Perhaps this was God’s way of telling me it was time to wean Alex off this medication, as we had done with two others successfully.

Contacting the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety, I sent her an email explaining the shortage of this particular medicine. First, I asked her what medication could substitute for the one he’s been taking, and then I asked if we could try weaning him off the medication by forgoing the nighttime dose, since he’s sleeping and wouldn’t be bothered by possible side effects as much. In her email response, I found out the replacement drug is one I really don’t want Alex to take because it has terrible side effects. However, she did agree that he could try not taking the nighttime dose and see how he does.

After discussing our options with Ed, we agreed that now is the time to try taking Alex off the nighttime dose since he’s doing well managing his anxiety. So, last Monday, for the first time in years, we did not give Alex the nighttime dose of that medication. Although I worried that he might have trouble going to sleep or might wake in the night or could wake up in the morning irritable without that dose, he fell asleep easily, slept peacefully through the night, and awakened in a sweet mood. Moreover, he was sweet natured every day last week, despite having his medication reduced by half. Clearly, taking away the nighttime dose was the right thing to do, and we are thankful that he doesn’t seem to be having any negative side effects from this change.

Early Thursday morning, Alex awakened me around 4:30 A.M., and a sense of dread awakened with me. Was the lack of medication affecting his sleep, and would he be agitated? No, he simply wanted to inform me that the power had gone off briefly in the night, and he calmly told me that his alarm clock wasn’t working. As I stumbled into his darkened room, half asleep and terribly nearsighted, I tried to see what was wrong with his clock, plugging it in different outlets, but having no luck.

Since time is very important to Alex, even in the night, I was concerned that he would be very upset that his clock would not work. No, he sat calmly on his bed, even amused that I was clumsily doing everything I could to make his clock work. Finally, I told him that his clock was broken, but I would go to Target when they opened and buy him a new one. Completely satisfied and not a bit irritated, he smiled, crawled under his covers, and went back to sleep. If I had any lingering doubts about taking away the nighttime dose of medication, they were gone. Alex calmly handled a situation that could have upset him in the night without the medication regulating his mood. There in the dark, sleepy, and half-blind, I saw clearly: God had planned this all along.

Because we were content with how well things were going, we weren’t going to initiate medication changes. However, God knew that Alex no longer needed this medication at night and put us in a situation where we feared that we wouldn’t be able to get more. Despite our fears that the change would be hard on Alex (and by association, us, too), he has dealt with the medication reduction beautifully, even in a situation that could have upset him. Once again, we were reminded that God knows what Alex needs better than we do, and we simply need to trust Him, pray for guidance, and be willing to embrace changes instead of fearing them. Tomorrow, as we celebrate the birth of God’s son, I pray that my faith will be more childlike––like my son’s––as I wait with anticipation, trying to be fearless and accepting changes, knowing that God’s plans for Alex’s life are better than anything I can imagine.

“They were terrified, but the angel reassured them. ‘Don’t be afraid!’ he said. ‘I bring you good news that will bring great joy to all people. The Savior––yes, the Messiah, the Lord––has been born today in Bethlehem, the city of David!’” Luke 2:9-12

Roll with the Changes

 

“Keep on rollin’; keep on rollin’. Oh, you got to learn to roll with the changes.”––"Roll with the Changes" by Kevin Cronin of REO Speedwagon

Commonly, people with autism have strong preferences for sameness and routines, which makes them resistant to change. For example, Alex insists on having a bath every night at exactly 6:00, and rarely can we persuade him to move this daily event to another time unless a much better alternative event convinces him to alter his sacred schedule. However, we have noted that over time, he has become increasingly flexible and less anxious about changes in his routine. Indeed, he is learning "to roll with the changes."

This week was my first week of summer vacation from teaching, which could have thrown Alex for a loop since he’s used to just being with his dad in the mornings while I’m at work. As it turned out, I was gone for parts of four mornings with two meetings and two breakfast outings with friends. This probably helped Alex ease into the transition of our summer schedule. Also, I try to help him deal with any anxiety by always leaving him a note telling him where I’ve gone and when I will return, which seems to comfort any worries he may have about why I’m gone and when I will be home. We’ll see how he responds next week when I’ll be home because my morning schedule isn’t as busy.

On Monday, Alex had his routine six-month appointment with the psychiatric nurse practitioner who prescribes his medications for anxiety. We were pleased to discover that she deemed the results of all of his blood tests “perfect” because they indicate that he is in excellent health and that the medications are not having any negative side effects. In addition, we were delighted that his behavior was fantastic during the appointment, calm and pleasant while he answered all of her questions. Of course, Alex was pleased that her schedule was running right on time so that he didn’t have to sit in the waiting room.

After we discussed his progress with her, she raised the issue I knew was coming––reducing his medications. As she pointed out, we can say that because things are going well, we shouldn’t rock the boat and should keep the medications the same. On the other hand, she noted, because things are going well, this may be a good time to reduce his medications. In a twist of roles, Ed, who is usually more receptive to change than I am, commented that we probably shouldn’t make any changes because Alex is doing well. Although I completely understand his logic, my mother’s instinct believes that we need to see if Alex can cope with less medication, and so with some trepidation we will try weaning him off one of his medications this summer and pray that we are doing the right thing.

On Tuesday, Alex met with his behavioral therapist for his regular weekly session, which went very well. Although she often doesn’t arrive at the scheduled time because of her busy schedule that requires travel through heavy traffic between two counties, she was ten minutes early on Tuesday. While that could have thrown Alex for a loop, he adjusted nicely to her early arrival and had a great session with her. Similarly, he showed flexibility on Wednesday when his peer companion who spends every Wednesday afternoon with him had to cancel at the last minute because she wasn’t feeling well. With two changes to his beloved routine in two days––one minor and one major––he still managed to be upbeat and calm.

On Thursday, Alex had his weekly session with his music therapist who is always punctual, faithfully arriving at his scheduled time every week. This week, he arrived early, and Alex again dealt with this change very well. In fact, his music therapist described the session as “fantastic” and noted that this was the second week in a row where Alex had done especially well with him. Of course, we were pleased by this positive report. In addition, he handled nicely a change in our dinner routine because Ed and my dad were attending a dinner reception for VU basketball season ticket holders, so Alex, my mom, and I went out to a restaurant for dinner. Alex seemed to enjoy himself thoroughly, and we remarked how much we enjoy taking him out to dinner because he behaves so well.

Friday threw Alex another curve ball, however, when his behavioral therapist had to cancel our planned recreational therapy session due to a family emergency. Even though Alex had been looking forward to going out to lunch at Subway with her and me, he didn’t seem terribly upset that our lunch plans had been altered. Later that evening, we discovered that our central air conditioning had broken, yet Alex continued his calm demeanor. As the temperatures rose into the 90’s yesterday, he never complained about the heat and only seemed amused to watch the thermometer rise in his upstairs bedroom, commenting that the it had never been that hot before in his entire life.

Because we have to wait until next week for the air conditioner to be repaired and because our bedrooms upstairs were too warm, even with windows opened and fans turned on, we decided to sleep in the basement, where it was much cooler. As we set up the pull-out bed in the couch for Ed and me and put Alex in basement bedroom twin bed, he seemed to view the experience as a grand adventure. Although I was concerned about how he would sleep in a different bed, he once again showed his flexibility, sleeping soundly in a new spot.

While Alex, like many people––including me––prefers the comfort of familiar routines, he is learning to accept and perhaps even embrace changes that occur, even when he doesn’t have time to prepare for them. This increased flexibility makes our lives easier because we don’t have to worry about his anxiety escalating. Moreover, he is realizing that life doesn’t always go as planned, and learning to roll with the changes will make his life more content. This week with all its unexpected alterations taught Alex valuable lessons and reminded us just how far he has come, and we continue to be thankful for the progress he has made.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it?” Isaiah 43:19

Filling a Need

 

Some people get it. When they do, we realize that God has put them in our path to fill a need; their presence in our lives is no coincidence. Finding the right professionals to work with our children who have autism is an important task we autism parents face. Over the years, we have been fortunate to find some outstanding individuals to work with Alex while others have been less impressive. At times we have stayed with some professionals longer than we probably should have, not ready to make a change. Sometimes God has to push me out of my comfort zone with both hands so that I know that it’s time to do something new. That happened last fall, and my full understanding of the need for change was clearly reinforced this past week.

Last August, when we took Alex to the pediatric dentist he had been seeing for nearly ten years, we were told that his upper twelve-year molars were badly decayed and would need to be removed. This came as a shock to us because his teeth had been fine when we had taken him six months earlier for a check-up. What was even more frustrating was that we were told this could wait unless the pain became so severe it kept Alex awake at night, which struck us as negligent. In addition, the dentist left this rather important news to a hygienist to relay to me instead of talking to me himself. This was the same dentist who had condescendingly dismissed me repeatedly anytime I had asked about Alex’s wisdom teeth, telling me that we weren’t going to worry about them.

Unsatisfied with the information they had given, I decided to make an appointment with my family dentist, whose judgment and skill I completely trust. He wisely had a panoramic x-ray taken of Alex’s teeth, which revealed that his wisdom teeth were badly impacted and likely damaging the roots of his twelve-year molars, which probably accounted for their decay. He recommended removing the twelve-year molars and the wisdom teeth at the same time and referred us to an experienced oral surgeon. As I explained in my November 9, 2014, blog entry “Healing,” Alex came through the surgery to remove his molars and wisdom teeth­­––as well as the recovery afterward––amazingly well, and we were thankful to have this procedure done by such a skillful doctor.

After this experience, I began to question the pediatric dentist’s decision to ignore my concerns as a parent regarding Alex’s wisdom teeth. Perhaps if he had taken my questions more seriously, Alex would not have lost his twelve-year molars due to the damage by the wisdom teeth. Moreover, I was not happy with his dismissive attitude toward me and insistence that any dental procedures done on Alex be performed under general anesthesia, which carries its own risks. Consequently, I decided it was time for a change. For his next regular dental appointment in February, we took Alex back to our family dentist. Encouraged by the kindness and compassion shown by both the hygienist and the dentist, Alex complied beautifully with having his teeth cleaned and checked, and we felt this was a sign we had made the right decision to change dentists.

When we took him again a few weeks ago for his six-month appointment to have his teeth cleaned and checked, we were pleased that Alex was quite calm and comfortable at the new dentist’s office while they worked on his teeth. However, we were a little disappointed to discover that he had a small cavity. Nonetheless, our dentist felt confident that Alex could handle having the cavity filled because he had been so good during the cleaning and check-up appointments. In addition, we were able to schedule an appointment to have the tooth filled the next day, which meant that we could get this procedure done before I had to go back to school the following week. Or so we thought.

The next day, the appointment began with putting numbing cream on a cotton roll as preparation for the numbing shots. As the numb began to spread through Alex’s mouth, he started to panic at the strange sensation he’d never felt before. (When he’d had his first two cavities filled two years earlier, he had been under general anesthesia instead of a local anesthesia.) He also wasn’t very happy about having the wad of cotton under his upper lip and complained that he had a fat lip. Although he never really escalated, he was anxious and kept grabbing my hands, seeking reassurance. Even though we tried explaining to him that this was temporary and that his lip wasn’t really fat, he was still unnerved (pun intended) by the situation.

Fortunately, our compassionate dentist understood Alex’s anxiety and offered an excellent idea. He gave us a tube of numbing cream and long handled cotton swabs to practice at home with Alex so that he could get used to the sensation of numbness and realize that the feeling does wear off in time. Additionally, he reassured us that Alex’s tooth could wait a few weeks without worrying about further damage, so we could reschedule the appointment when we felt Alex was ready to handle it. Most importantly, he emphasized to us that he didn’t want Alex to be scared, and he didn’t act a bit inconvenienced that Alex wasn’t up to having his tooth filled that day.

After practicing with the numbing cream at home, Alex became comfortable with the sensation of having his mouth numb, and I went ahead and made another appointment to have his tooth filled. Truthfully, I had a lot of trepidation about whether he could handle the numbing shots, the drill, and everything else involved in repairing the tooth. Nonetheless, we prayed that he would not get upset and put our trust in God and our dentist that everything would be okay.

Last Thursday, I scheduled a noon appointment: after lunch, between The Price Is Right and Jeopardy!, and at a time when he is usually fairly mellow. The dental assistant took us back to a large private room where Ed and I could also stay with him comfortably and where they could close the door so that he wouldn’t hear noises from the other procedure rooms. After turning on the television to a baseball game that provided a welcome distraction, our dentist and his assistant compassionately and calmly took care of Alex’s tooth, preparing him for every step of the process by explaining what would happen and praising him for being so cooperative. Thankfully, Alex was remarkably calm and didn’t seem bothered a bit by anything they did to his mouth. He appeared completely comfortable and relaxed the entire time he was in the dentist’s chair, which was a blessing. The dentist did everything possible to reassure Alex, and Alex trusted him completely.

In fact, things went so well that with our approval, the dentist also sealed another tooth to prevent decay since Alex was already numb, and the assistant smoothed a tooth that had been chipped a while ago so that it would not bother his lip and would look better. Not only did Alex sail through the planned procedure, but he also handled the extras added at the last minute quite well. Of course, Ed and I were extremely relieved that things went smoothly, and we were especially proud that Alex handled perfectly a new situation that many people find difficult. We also truly appreciated the understanding and wisdom of our dentist, who knew what Alex needed to feel safe and comfortable and waited until he was ready.

Consequently, we know that God has led us to change dentists to one who can provide what Alex needs. We need someone whom we can trust to take care of Alex and not only make him feel comfortable in a new situation but also provided a good first experience that will make him not afraid to face similar situations in the future. As Alex now ends his nightly prayers, “God bless Dr. Lyzak.”

“He will once again fill your mouth with laughter and your lips with shouts of joy.” Job 8:21

New Things

 

This past week was the first week of my summer vacation from school, but it was a busy week filled with activity and new things. Thankfully, Alex handled the hectic schedule and transitions amazingly well, which shows the progress he’s made in being more flexible and willing to try new things.

On Monday, we had an appointment with his psychiatric nurse practitioner who prescribes his medications for OCD and anxiety. This was the second time that we had visited her new office, which is conveniently located less than ten minutes from our house. Previously, we had to travel about thirty minutes to her old office, and we’re thankful that our travel time is much less now, even though we only need to see her every six months.

For this appointment, Alex did an especially good job of answering her questions instead of relying on us to answer for him. We were also pleased to tell her about the additional services that Alex receives since she last saw him in December. She had good news to share, as well, telling us that all of Alex’s blood tests looked very good. Since his lab work indicates normal levels and he is doing so well, she decided to not make any changes in his medication. After we thanked her and left her office, we took Alex to Target to pick out the things he would need for his next adventure on Tuesday.

“Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert.” Isaiah 43:19 KJV

On Tuesday, Alex not only had computer class at his day program for adults with disabilities, but he also stayed for lunch hour there with his peers for the first time, something he’d been eagerly anticipating for weeks. With his brand new lunch bag that he chose himself, he headed off for class and lunch with friends. When Ed went to pick him up afterward, they told us that he had done very well but was a little shaky, which can happen for various reasons.

After we questioned him a bit, he told us that he was a little nervous that we might not pick him up on time after lunch. Considering that he’s used to being around us most of the time, his separation anxiety was understandable. We reassured him that we will always pick him up on time, and he seemed satisfied. During his behavioral therapy session that afternoon, his therapist also assured him that he didn’t need to worry about being picked up after lunch because he could depend on us.

“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 ESV

On Wednesday, his caretaker Jessica came to, as she says, “hang out with” Alex in the afternoon. Ed and I had planned to go out to lunch while she was there, but Alex seemed to be a little off. In fact, he told me that if we left, he was going to be bad for Jessica. Since that didn’t sound promising, I told Jessica that we’d stay home since I didn’t trust him. However, Jessica stepped up, assertively told Alex that he was going to behave while we were gone, and encouraged us to go, insisting that they would be fine. Since I still had doubts, I told her to call me on my cell phone if she needed anything, and I kept checking it throughout our lunch. However, she never called, and when we came home, she told us that Alex had been perfect and had not given her a bit of trouble. This was the first time that I had left him when I was concerned he might not behave, but Jessica’s no-nonsense attitude showed Alex that she was boss, and he complied.

“See, I will do a new thing, now it shall spring forth; shall you not be aware of it? I will even make a way in the wilderness and rivers in the desert.” Isaiah 43:19 MEV

On Thursday, Alex once again had computer class and lunch at his day program, and he once again got along very well. In fact, the supervisor told Ed that after lunch, she had Alex help clean up by washing dishes, wiping off tables, and running the vacuum cleaner. Not only was he comfortable having lunch there on just his second time, but he was also practicing daily living skills by cleaning up afterward. He seemed pretty proud of himself when he told us what he had done while he was there.

That afternoon, we had another new thing: instead of having his music therapist come to our home for his session, we went to the music therapist’s new office here in town for the first time. Even though we had prepared him for this change, his music therapist and I anticipated that he might need some transition time to adjust to the new setting. However, Alex sat right down at the keyboard with a huge smile on his face, ready to start the session. Afterward, his therapist told me that he had done a terrific job and didn’t seem to mind being in a new place at all. This new flexibility on Alex’s part amazes all of us who know him well.

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19 NIV

On Friday morning, we took Alex to his new doctor for a follow-up visit since he last saw her for the first time in the fall. At that visit, he was pretty edgy and didn’t seem comfortable in the new office. However, this time he was calm and pleasant, and he answered the doctor’s questions nicely. Because he has yeast overgrowth, thrush, in his mouth again, we’re going to treat him with antifungal medication, and we’re going to try vitamin B12 shots for a few months to treat his slight anemia. Even though we have done these treatments before, doing them with a new doctor feels different. However, we like her very much because she is kind to Alex and takes our concerns seriously. We pray that she will help him continue to heal.

“Be alert, be present, I’m about to do something brand-new. It’s bursting out. Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.” Isaiah 43:19 MSG

Yesterday we started Alex on a new supplement to help heal his gut and boost his immunity. After listening to an online lecture featuring a doctor who specializes in internal medicine and wellness, I found his explanation of inflammation and its connection to disease logical and fascinating. Consequently, I decided to try his recommended protocol for Alex in hopes that we can eradicate the stubborn yeast infections that have plagued him for more than three years. We pray that this new method will bring healing not just to Alex but also to others with autism. As someone who does not like change, I felt a bit unnerved as this week of new things shifted us out of our comfortable rut. Nonetheless, I have faith and hope that God is making the paths out of the autism wilderness, desert,  wasteland, and badlands, and He is taking Alex where he needs to go. Behold!

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19 NLT

Curve Balls

 

curve ball-[slang]-something that is unexpected, surprising, or disruptive

Two weeks ago marked the beginning of the Major League Baseball season, which Alex has been eagerly anticipating. Like his grandfather and mother, he’s a lifelong Chicago Cubs fan who starts each season believing that this will finally be the year they win the World Series—that eternal optimism that keeps Alex cheering for his beleaguered team. However, various difficulties, usually in the form of poor pitching, beset the Cubs every year and make the season more difficult than anticipated. This week we had some curve balls thrown our way that we didn’t expect, and we had to figure out what was the best way to address them, especially since things have been going very smoothly the past few months.

On Monday, we found out that our insurance company is refusing to pay the oral surgeon who removed Alex’s wisdom teeth in November, claiming that the extractions were not medically necessary. After Alex got along amazingly well when his teeth were extracted, we thought that we had come through that experience much more easily than we had anticipated. However, this curve ball may mean that we will have to pay for the surgery, which our insurance is supposed to cover according to our policy. Fortunately, the woman who handles insurance at the oral surgeon’s office has been very helpful, pleading our case with the insurance company as we appeal their ruling. She commented that Alex’s wisdom teeth were among the worst impacted she has ever seen on x-rays; in fact, the oral surgeon had described them to us as “totally bone impacted” and explained that they needed to be removed so that they did not cause ongoing pain and further damage to his teeth. (They had already damaged the roots of his upper twelve year molars.) Moreover, their office believes that our insurance company is discriminating against Alex because he has autism. While we are frustrated that the insurance company is being difficult, we are thankful that our oral surgeon’s office is not only being understanding but also supportive, helping us fight the insurance company’s refusal to pay and appealing their decision.

On Tuesday, when Alex went to computer class, we were told that he would have a new staff person working with him because the woman who has been working with him has been assigned other responsibilities. To ease the transition, the woman who has been working with him since he started computer class in January will train and shadow the new woman who will be working with Alex. Although we understood the need for the change, we wished that we had been told ahead of time so that we could have prepared Alex, who is especially fond of the woman who has been teaching him computer skills. In addition, those who work with Alex are supposed to be trained by his behavioral therapist so that they know how to address any issues that may arise with him. While Alex seemed to handle this change of staff fairly well, I called the agency with my concern with the need for the new staff to be trained on his behavior service plan and was assured that this will happen.

Later in the day, Alex had another curve ball thrown at him when we found out his behavioral therapist will not be available for our Friday recreational therapy sessions for three weeks, due to scheduling conflicts. Since Alex looks forward to these Fun Fridays, I sensed that he was not very happy with this news, yet he did well during his behavioral therapy session. However, after she left, he expressed his disappointment to me about missing Fun Fridays. Apparently two changes in one day overwhelmed him as he resorted to exaggeration and dramatically told me that his music therapist was never coming again. I reassured him that he could depend on his music therapist, who faithfully comes to see him every Thursday. In addition, I suggested that he and I could still do Fun Fridays, even though his behavioral therapist would not be there. This seemed to ease his mind a bit.

After a blissfully uneventful day on Wednesday, when he enjoyed spending time with his caretaker while I enjoyed shopping, the changes of the week seemed to really hit home on Thursday. As promised, his music therapist arrived for their weekly session, but Alex became agitated instead of relieved. For the first time in months, he was anxious and upset, and he let me know by grabbing me and muttering angrily. Fortunately, his fantastic music therapist and I worked together to calm him quickly, and he settled down and had a great session of music therapy.

On Friday, I kept my promise to Alex that we would still have Fun Friday, and I sweetened the deal for him by inviting my mom and sister, his beloved Aunt Tammy. As we enjoyed lunch and visiting at Burger King, Alex entertained himself by imitating Tammy, whose voice he finds fascinating. After a week of unexpected and unwelcome surprises, it was nice to relax and spend time with family. I thought we were finished with curve balls for the week until I got home and opened a letter informing us that the agency that provides us with respite care (Alex’s caregiver on Wednesday afternoons) and day services (computer classes) had just assigned us a new representative to coordinate his services—the third one in six months. Although our contact with this person is primarily limited to our quarterly meetings with Alex’s team of professionals, another change of staff just added to the already unsettling week we’d already had.

While I know that life is full of changes and that Alex will need to learn to adapt even when he’s not happy, Ed and I still try to prepare him for transitions, knowing that he prefers predictability and routines. Since things have been going so smoothly lately, we felt disappointment that these sudden changes this week upset Alex. Whenever he seems anxious, I try to analyze whether he is responding to the situation, picking up on my anxiety, and/or dealing with yeast overgrowth in his system. Consequently, I reassured him as best I could, tried to keep myself calm, and gave him an antifungal medication, just to cover all the bases.

After a trying week for all of us, we enjoyed a relaxing Saturday with no obligations, and Alex seemed much happier and calmer, as though he had come to terms with all that had been thrown at him this week. Last night, he smiled and happily announced to me out of the blue, “You’re healthy!” Of course, with his pronoun reversal problems what he really meant was that he is healthy. After I had spent the week trying to reassure him, he was now trying to reassure me that everything is going to be fine. Despite the various challenges of the week, we move forward optimistically, as all true Cub fans do, knowing that eventually things will get better in time.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love Him.” James 1:12

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

Lessons Learned

 

This week, People magazine’s fortieth anniversary issue included a feature entitled “Advice to My Younger Self” in which they asked celebrities “what life lessons they wish they had known when they were just starting out.” As I read the responses, I found some to be rather superficial, perhaps offered in jest, wishing they’d reconsidered hairstyles or wearing sunscreen. Others seemed to focus upon ignoring hurtful criticism, and some insisted that they wouldn’t try to give their younger selves advice. A few showed good insight into life and what they had learned from experience, such as actress Jennifer Aniston, who was quoted as saying, “I would just say, ‘You’re doing exactly what you’re supposed to be doing. Just keep doing it. It gets better.’” Looking back on my experience as an autism mom, I think I would agree with her advice. I would also share a few more lessons that I have learned to save my younger self some worry, and maybe they could help other parents new to this journey with autism, as well.

Lose the guilt. After Alex was diagnosed with autism, I worried that somehow I was to blame. Was it something I did when I was pregnant with him? Was it something I didn’t do? Even though I followed my doctors’ advice to the letter during my high-risk pregnancy and have always lived a clean life, I blamed myself. To atone for my self-perceived sins, I threw myself wholeheartedly in trying to find ways to make him better. When progress was slow, I felt guilty that I was somehow doing something wrong. Over the years, I’ve realized that shouldering needless blame is tiring and pointless. God doesn’t want me to feel guilty, and I need to stop feeling as though things that go wrong are my fault.

“Stop assuming my guilt, for I have done no wrong.” Job 6:29

Be patient. One of my flaws is that I have little patience for waiting. However, raising a child with autism has made me learn patience because so many skills take longer to master than they do with typical children. At times, I thought Alex would never sleep through the night, would never use the toilet independently, would never be able to have a conversation, and many other things I wrote off as impossible for him. Over time, he conquered the obstacles on his timetable and on his terms. Now, whenever I become impatient waiting for him to learn new tasks, I must remember his past accomplishments and know that God is not finished with him or, for that matter, with me.

“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

Change is good. Although I’m a person who prefers to exist in a comfortable rut, I have learned that the changes I dread often turn out to be for our good in the long run. Over the years, we have had various professionals who work with Alex come and go, and I have mourned the loss of these people. Even though they were wonderful, God has sent us others to replace them who meet our current needs instead of our former ones. As some of these people who had been so important in our lives have moved away, seemingly closing doors, others moved into our lives and brought new approaches Alex needed. For example, I felt great disappointment when Alex’s beloved energetic behavioral therapist took another job. However, her sweet and mellow replacement was exactly what he needed. He has made great progress with her, and we adore her—she is a gift from God.

“For I am about to do something new. See, I have already begun! Do you not see it?” Isaiah 43:19

Choose faith over fear. One of the greatest lessons I have learned over the years is to have faith that things will work out in the end. That faith has come with testing because I tend to fret over everything. However, through experience I have found that many of the things I have worried about never came to pass, and we survived the trying times that did arise by depending upon our faith. Fear paralyzes; faith energizes. When we didn’t know what to do to help Alex, prayer strengthened us and gave us the peace and wisdom we needed to make decisions. While I still struggle with trying not to worry, my faith has grown, and I try to remember to pray before I panic.

“They do not fear bad news; they confidently trust the Lord to care for them.” Psalm 112:7

Look forward. While I worry about what the future holds for Alex, especially when Ed and I aren’t around to take care of him, I know that I need to trust God to take care of him. Moreover, I can look back on the progress he has made and continue to hope that he will eventually overcome all of the obstacles autism has presented. When I become frustrated that his progress seems to be moving more slowly than I’d like or even that he seems to be taking steps backward, I remember that this is only a temporary setback. We keep pressing forward, knowing that he will get better. This hope sustains me when I feel disappointed, frustrated or worried because I look forward to the day when we can look back and celebrate just how far we’ve come, knowing that God was with us every step of the way.

“Yet I am confident I will see the Lord’s goodness while I am here in the land of the living.” Psalm 27:13

Dealing with Change

A common characteristic used to describe people with autism is that they possess an insistence on sameness and a resistance to change. In fact, if one Googles “resistance to change autism” (as I did out of curiosity), over one million results can be found. As I have mentioned in previous blog entries, Alex is remarkably flexible about change and spontaneity. While he enjoys the predictability of some routines, he is also willing to try new things, even on the spur of the moment. However, I, who am not on the autism spectrum, resist change mightily and need time to adjust and plan before I can jump into something new. This week I was reminded of the difference between Alex and me in this respect.

For the past year, Alex has been working with a behavioral therapist who comes to our house each week for an hour. Through a variety of activities, the therapist addresses Alex’s issues, such as his anxiety and impulse control, and also works with him on social skills that autism impairs, such as respecting personal space and making conversation. We have been pleased with the progress we have seen Alex make as he has learned some calming techniques, self-control, and interpersonal skills. Moreover, he looks forward to these weekly sessions and considers his therapist his friend.

When we began behavioral therapy a year ago, he was first assigned a therapist who interacted quite well with him. However, in March, we found out she was moving out of state because her husband had taken a new job. She assured us that she would help Alex make the transition smoothly by bringing his new therapist to shadow a few of their sessions so that he could meet her and so that she could learn the routines they had established. As promised, the transition period gave Alex and his new therapist time to get to know one another and adjust nicely before she took over the therapy sessions on her own.

Although I was a bit concerned about how Alex would adapt to the new therapist, he clearly embraced the change immediately and eagerly looked forward to working with her. Her kindness, enthusiasm, and humor endeared her to him and us right away, and we felt blessed that she had been chosen to work with him. In fact, I commented that she was a gift from God because she had come to us all the way from Turkey. Recently, we learned that she had come to the United States to get her master’s degree and had planned to return to her home country, but she met the man who was to become her husband, an American from this area, and decided to complete her doctoral degree and live here permanently. For all those things to fall into place so that she could work with Alex, a divine plan had to be in order.

Listening to their therapy sessions from the next room, I not only appreciated that she made Alex accountable for his behavior and set reasonable expectations for him, but that she also praised him freely, often telling him in her delightful Turkish accent, “Alex, you are so smart and funny.” Anyone who is kind to Alex holds a special place in my heart, after all. When she took a trip back to Turkey to visit her family this summer, she excitedly told him about her experience of seeing turtles coming from the Mediterranean Sea to lay their eggs in the sand, knowing that Alex has a special interest in turtles. She even brought him a souvenir from this trip, a small realistic-looking turtle that she said made her think of him while she was on vacation. Of course, he was pleased that she brought him a gift, but he was even more pleased to see her after she returned from her trip.

This week, we found out that Alex’s beloved therapist has been promoted to a supervisory position and will only be working with him for a few more weeks to help him transition to a new therapist. I have no doubt that my face clearly registered the deep disappointment I felt when she told me that she would be no longer be working with Alex once she begins her new job. While I’m pleased that her excellence has been rewarded with a promotion and know that she will do a wonderful job in that capacity, I’m sad to lose her as Alex’s therapist and will miss her weekly visits.

Upon meeting his new therapist, who will be observing sessions during the transition stage, Alex seemed quite receptive to her, smiling at her often and asking her his usual litany of questions to learn more about her, including how tall she is and how many teeth she has. Apparently his current therapist had prepared her for this interrogation, as she laughed and willingly provided Alex the statistics that he needs to quantify her in his mathematical mind. While I’m mourning the loss of his current therapist, Alex is looking forward to getting to know someone new, even though I’m sure he will miss seeing his old friend, too. As we prepare for another change, I remember that God knows what Alex needs even more than I think I do, and I’m certain that He has allowed this change of therapists for a good reason. With that in mind and with Alex’s example of flexibility in spite of his autism, I look forward to what his new therapist will do to help him learn and grow to become the best that he can be.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

Challenges Faded

About the time Ed and I think that Alex will never get past some phase, his behavior changes, and whatever challenge we’ve been facing fades away. Earlier this summer, Alex suddenly developed an aversion to going places. To get him to go someplace, we’d have to encourage him to get in the car and assure him that he’d have fun. Maybe we were a little too enthusiastic in our promoting the rides in the car; he would look at us askance as we clapped, talked in overly cheerful voices, and motioned him toward the door, saying, “C’mon, let’s go!” Despite our best efforts, Alex wasn’t about to budge from his comfortable seat on the couch. Thankfully, he’s gotten past that phase and now will eagerly go anyplace anytime. He doesn’t even need to know where we’re going; he jumps up and heads for the door. A few days ago, I mentioned to Ed that I was going to make a quick run to the grocery store, and Alex immediately came running to go with me when he overheard us talking. Although I had planned to go alone, he was so happy to be going I wasn’t about to deny him the trip to the store.

While Alex had issues about going places this summer, a couple of summers ago, he had an obsession with going to the bathroom with ridiculous frequency. He would run to use the bathroom every commercial break, which meant that he was going several times an hour. Because he had been so difficult to toilet train, we weren’t about to stop him from going, but his frantic runs for the bathroom and subsequent toilet flushing throughout the day did become tiresome. Although we can’t always trace the source of Alex’s obsessions, I had a pretty good idea what had started this one. He had been playing a video game called Bosconian and had become amazingly good. Unfortunately, this game could not be paused, and Alex was skilled enough to play for more than an hour or so. One evening, he had his record high game, which took more than four hours to play. Once he was finished, he came running to use the bathroom, and we wondered how long he’d felt the urge to go but waited until his outstanding game was done. After that, we noticed his frequent trips to the bathroom, which I think was related to that instance of having to wait until he finished his record game. For nearly the entire summer, he went to the bathroom before he would do anything: go places, eat, play a game, watch a show, etc. Apparently, he didn’t want to interrupt any activity to stop and use the toilet. Fortunately, that phase, too, faded with time, and now he uses the bathroom only when necessary, which I’m sure, helped our water bill decrease significantly.

Another challenge Alex has overcome has been his fear of thunderstorms. When he was little, he was terrified of storms, and if he were awakened by thunder during the night, he would have a meltdown. Somehow, he gradually overcame this fear, which came as a great relief to us. A few nights ago, we had a very loud thunderstorm around three in the morning that awakened Ed and me. We listened for Alex, thinking surely that he had to be awake, as well. Ed decided to check on Alex to see if the storm had upset him, and we planned to take him down to the basement if needed, where he couldn’t hear the thunder or see the lightning. After creeping into Alex’s room, Ed discovered that Alex wasn’t a bit upset; in fact, he was sound asleep. Clearly, his sound sensitivity has lessened over the years. Even when Alex does hear thunder now during the daytime, he seems never to be fazed by it anymore. We can’t pinpoint when this change in his behavior occurred, but we’re pleased that his fear of storms seems to have faded away at some point. Whenever we fret about some current challenge Alex has, we try to remember the issues he’s overcome in the past and feel blessed to know that eventually every phase fades with time.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19

Changing Doctors

Last month, I explained in my blog entry “Change” that the beloved doctor who had taken care of Alex and me for several years decided to retire because of her own health issues. While I knew with her increasing age that this event was an eventuality, I was still sad to lose the medical advice of someone I not only trusted and admired, but also genuinely liked as a person. The rapport we had established over the years was something I knew was a blessing, and I appreciated that she always listened earnestly and sympathetically to my concerns. Moreover, her holistic approach to medicine, using supplements and unconventional treatments, such as cranial therapy and chelation, was similar to the methods being used by the Defeat Autism Now doctors, whose biomedical research I follow faithfully. Under her guidance, we tested Alex for various issues, put him on a gluten-free and casein-free diet, rid his body of toxic metals through chelation, treated him for yeast overgrowth in his digestive system, implemented vitamin B-12 injections to heal his nervous system, and improved his behavior and sleep by giving him supplements that calm him. I’m convinced that without her interventions and support of the methods I wanted to try with him, Alex would not be as healthy and well-behaved as he is today.

After my initial disappointment of losing such a special doctor, I began searching for a new doctor for Alex, asking family and friends for recommendations, and decided to take him to Ed’s doctor, who is also the family doctor of my sister’s family and some of my friends. Because Alex was a new patient, we had to wait nearly a month before I could make an appointment to see the new doctor. Alex had been to our previous doctor last summer for a complete physical and had received a clean bill of health, but I wanted to establish Alex as the new doctor’s patient in case he became sick and needed to see him right away. In addition, I thought we should explain Alex’s autism and how it impacts his health and daily living. The month wait was actually a blessing because Alex had been dealing with some strange obsession about wanting to change his voice, and even going so far as to want surgery to make his voice pitch higher, like a child’s. Not only did this offbeat idea drive us crazy as Alex constantly discussed it, but the obsession became scary when he briefly decided that he’d like to have brain transplant so that he could have a little kid’s brain. Fortunately, his Frankenstein notion didn’t last long, but he kept talking about wanting to ask the doctor about voice surgery. A couple of weeks before the doctor’s appointment, Alex suddenly—and thankfully—quit talking about having his voice altered. In preparation for seeing the new doctor, I went through my records of Alex’s medical history so that I could detail any important information. In addition, I had obtained copies of pertinent tests and notes from his previous doctor to give to the new doctor, and I typed up a list of his current medications and supplements for his new records. When his appointment arrived this week, I was ready, and Alex was eager to go, happy hopping through the house as though we were taking him to the circus, just as he does with any new situation that he sees as an adventure.

When we arrived at the doctor’s office, I was impressed by how smoothly the office ran and pleased we didn’t have to wait long. However, I was surprised by how little information was requested regarding medical history on the forms I filled out prior to seeing the doctor. Alex happily watched as I wrote down the basic information regarding his name, address, phone number, emergency contacts, and insurance, and he was pleased to remind me of his social security number and to sign the form at the bottom. When the doctor’s nurse looked over Alex’s list of supplements that I had carefully compiled, she looked at me askance and said, “I don’t know what half of these are.” While my first thought was an offer to teach her what they were, her facial expression suggested that I’d better keep my thoughts to myself. Then she commented that the former doctor had her patients on all kinds of weird things, and she asked me, “Do you plan to keep him on all that stuff?” I assured her that I did because they helped Alex. She looked at me as though I had said I planned to dance around fire and asked if I knew where to get the supplements. I told her I did, and she just sighed. While this was not an auspicious beginning to the appointment, I bit my tongue and fought my need to explain biomedical interventions in autism. When the doctor came in, he was pleasant and asked us several questions regarding typical health issues, and we told him that Alex is remarkably healthy. After examining Alex and looking over his latest blood test results, he agreed that Alex is quite healthy but suggested that he have annual flu shots. When I told him that Alex had problems with heavy metal toxicity, so we avoided shots with preservatives, he didn’t push the point. Perhaps he agreed with me, or perhaps he thinks I’m one of those crazy autism moms. Nonetheless, I liked his calm, easygoing manner and think he will be fine for Alex. The best thing, however, was that Alex’s behavior was excellent. He was pleasant and cooperative the entire time, other than having difficulty in opening his mouth wide to have his throat examined and his misunderstanding of what taking deep breaths means when the doctor listens to his lungs—he kept saying, “AHHHH” instead. All in all, it was a good first visit: Alex didn’t make a bad first impression by asking for voice-changing surgery or a brain transplant, and my prayers were answered in that Alex received another good report from the doctor.

“A cheerful look brings joy to the heart; good news makes for good health.” Proverbs 15:30