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 Eyes Have It

On Monday, we took Alex for his annual eye exam. As with all appointments related to his health, Alex was looking forward to his visit to the optometrist, especially because he thinks she has a pleasant voice. Since we have been going to this eye clinic for several years, we know that things typically run smoothly there, which is one of the main reasons we take Alex there. However, the normally calm office seemed a bit “chaotic,” to quote one of the staff, that day.

When we arrived, a new staff member handed me forms to fill out. The first one, part of HIPAA compliance for privacy of information, would allow Alex to give Ed and me permission to access his medical information. Since Ed and I are Alex’s legal health care representatives and have medical power of attorney, we already have this right. As I tried to explain this to the receptionist, she seemed confused and not completely convinced until another staff member told her that I was correct and the form did not need to be completed.

After that, she pulled out a colorful photograph of a human eye and started a sales pitch about the wonderful diagnostic photos their office could take of the inside of Alex’s eyes. Having had these same photographs taken of my own eyes, I knew that Alex could neither sit still long enough to have this done, nor would he like the overwhelming sensation of having a very bright flash of light in his eyes. Consequently, I told her that he could not have that part of the exam done. Undaunted, she continued her spiel, explaining that he would not need to have his eyes dilated for that test. Undaunted, I explained that Alex has autism and would not be able to do that test. Fortunately, the other woman at the desk again intervened for me, telling the receptionist, “His mom is right. She knows what he can and can’t do. He won’t have the photograph taken.” As I nodded appreciatively toward her, the receptionist seemed a bit disappointed as she put her visual aid away.

When we went for Alex’s preliminary testing with the optometry tech, Alex did a great job of cooperating and following her directions. She seemed to understand that he could not do the photograph, nor the peripheral vision test that requires more dexterity than he possesses, using a hand clicker when images appear on a screen. We appreciated her kindness toward him, especially since she praised him enthusiastically about how well he had done.

After we went back to the examination room, she and I went over Alex’s medication changes while Ed chatted with Alex, who was patiently waiting. She asked me if they could dilate his eyes, and I immediately said no a bit sharply, and then remembered my manners, adding, “Please don’t.” For all the years Alex has gone to the eye doctor, we have managed to avoid testing and dilating that might upset him and make him unwilling to go to future eye exams. Since he has no real issues other than being slightly nearsighted, we didn’t need to risk upsetting him with unnecessary procedures. She seemed to understand, and then she began the preliminary vision exam.

While wearing his glasses, Alex began to read the letters off the screen. Even though I was bothered that the letters were tilted at a slight angle because the projector was not level, Alex didn’t seem annoyed by this. For the first line of letters, he recited letters that weren’t even close to what was on the screen. When I asked him if he could see any of them clearly, he admitted that he couldn’t. I told him that if he couldn’t see something, he could just tell us that and didn’t have to make up answers. That seemed to reassure him. For the next line, which was a little larger font, he was able to identify some letters but confused a T for and I and an F for an E. At least he was getting closer. By the time he saw the third line, he was able to read all of them easily and correctly. When this test was repeated on his other eye, the process was the same, except this time, he told us that he couldn’t read any of the smallest letters, heeding my advice.

When the eye doctor came in to examine Alex’s eyes more closely, he continued to be calm and cooperative, answering her questions clearly and admitting when he was unable to read certain letters. After various tests, she concluded that his eyes are healthy, but his prescription had changed slightly. When Alex was retested with the stronger lenses, he was able to read all of the small-sized font letters easily instead of just making up letters or admitting that he couldn’t see them. That confirmed that he would need new glasses.

As we went to select frames for the new glasses, the entire staff seemed to be engaged in learning something at a computer, so we browsed the rather meager selection of Flexon frames. Because the Flexon brand is quite durable and bends rather than breaks, we have always chosen this brand for Alex, even though he takes excellent care of his glasses. By the time the optician came over to help us, I was about ready to ask for his prescription so that we could get glasses somewhere else. When I asked her if they had any other choices, she seemed a bit unnerved and admitted that she doesn’t usually work in this office. The woman at the desk who had been helpful when we arrived immediately told us that there were more frames in the back and that she would get them for us. Soon, she returned with two boxes of frames, and we quickly found a few we liked. Because Alex isn’t terribly picky about the appearance of his glasses, Ed and I agreed on a pair similar to the one he already has.

Next, we had to order the lenses, which we thought would be simple since it had only been two or three years since he last ordered glasses. However, the optician told us that they get rid of the electronic files after a couple of years, so we weren’t sure whether that information was available or not. After rolling my eyes at Ed, trying to contain my growing annoyance, the optician was able to locate the previous information, saving us time.

Thinking we were now home free, another staff member informed us that they couldn’t take a credit card payment because they were switching to a new system. She seemed a bit overwhelmed until I assured her that after we went home, I would come back with my checkbook and pay with a check, figuring that was the simplest solution. Despite all the unexpected issues that had arisen during this visit, Alex seemed completely unfazed. As I could feel my frustration rising, I knew that Alex was handling these small annoyances correctly by smiling and being polite and patient. If he could be content, so could I.

After Ed and I took Alex home, we praised him for being pleasant and cooperative at the eye doctor. Then, I returned to the eye clinic to pay for Alex’s exam and glasses. The kind woman who had been supportive apologized to me for the “chaotic” atmosphere and hoped that Alex hadn’t been upset by anything that had happened. I thanked her for her help and assured her that he was fine. She commented that Alex always does well, adding that the eye doctor and tech had also remarked on what a great job he had done. Despite the various minor issues, Alex had successfully completed his annual eye exam. Perhaps more importantly, he reminded me through his calm demeanor not to be upset by little things. Instead of focusing on the paperwork issues, he was interacting with the staff in a positive way, making a favorable impression. Needless to say, we’re awfully proud of the young man we have raised who sees––even without his glasses––what’s truly important in life.

“Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” I Corinthians 13:12

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

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

Commencement

Dear Class of 2014 (especially my two nieces who just graduated from high school),

As you listen to commencement addresses, you hear all sorts of platitudes about how to live your life. Some offer good advice, and you should pay heed. Despite all that you have learned in your education, you will learn so much more in life. Sometimes you will be prepared with the wisdom you have gained, but many times in life, experience will be your best teacher. I can confirm that truth from my own experience. Despite all I learned from my excellent education, nothing really prepared me for the most important role in my life as an autism mom. When I look at photographs of myself at your age, I see an innocent, wide-eyed, hopeful girl who had no idea what challenges she had ahead of her. Yet, raising a child with autism has made me do all those things your graduation speakers have told you to do—dream big, work hard, and never give up—in ways I never thought I could do.

Aside from just the day-to-day experiences of helping my son overcome the challenges autism has presented, I have learned valuable lessons from scriptures and country song lyrics that have reminded me what’s really important in life: patience, perseverance, presence, faith, hope, and love.

What no one tells you about life is that you’ll spend a great deal of time waiting for something—waiting for a phone call, waiting in line, waiting for something good to happen. While you wait, just learn to be patient, which will serve you well when you are waiting for situations to get better. As Amy Grant sings in “It Take a Little Time,” “It takes a little time sometimes to get your feet back on the ground. It takes a little time sometimes to get the Titanic turned back around. It takes a little time sometimes, but, Baby, you’re not going down. It takes more than you’ve got right now. Give it; give it time."

Part of that waiting process is plugging away and never giving up, especially when quitting would be so much easier. As I’ve watched my son struggle to do tasks that most people can do easily, he has taught me the value of perseverance. He knows that eventually he’ll accomplish what he has set out to do, and as he often reminds me, “Wait and see.” In the words of Leanne Womack’s beautiful ballad, “I Hope You Dance”: “Whenever one door closes, I hope one more opens. Promise me that you’ll give faith a fighting chance, and when you get the choice to sit it out or dance, I hope you dance.”

With all that waiting and working toward the future, we need to remember to savor the present, to appreciate all the good in the right now that we can easily miss worrying about the future. In her song “So Small,” Carrie Underwood offers good advice: “While you sit around thinking about what you can’t change and worrying about all the wrong things, time’s flying by, moving so fast. You better make it count ‘cause you can’t get it back.”

So how do we deal with all the worries in life? Faith will carry us through those times when we fear the unknown, the overwhelming, and truly terrifying.  Life with autism has strengthened my faith because I’ve learned that I cannot do things on my own, and faith has comforted me by assuring me God is in control. As Garth Brooks sings in “The River,” “There’s bound to be rough waters, and I know I’ll take some falls. But with the Good Lord as my captain, I can make it through them all.”

In those rough waters, faith carries us, but hope sustains us, reminding us that what may seem permanent is only temporary. As we look forward with anticipation, we know that things will get better. In the words of the Rascal Flatts song “My Wish,” “My wish for you is that this life becomes all that you want it to, your dreams stay big, your worries stay small, you never need to carry more than you can hold.”

While learning patience, perseverance, and presence will enhance our lives, faith and hope are vital to our existence. As the scriptures remind us, even greater than faith and hope is love. Without that overpowering force, our lives become meaningless. Love motivates us to help others, to be sacrificial, and to become the best people we can be for others’ sakes. Pure love guides us to do the right thing and reminds us that we’re never alone. As Lady Antebellum advises in their song “Compass,” “So let your heart, Sweetheart, be your compass when you’re lost, and you should follow it wherever it may go. When it’s all said and done, you can walk instead of run ‘cause no matter what, you’ll never be alone.”

Congratulations, Graduates, and as you step out into the “Real World,” I pray that you find patience and perseverance when you need it, enjoy the present, and remember to hang on to hope, faith, and love, which will always see you through any circumstance and help you fulfill your destiny in life.

“There are three things that remain—faith, hope, and love—and the greatest of these is love.” I Corinthians 13:13

Staying on Track

Many parents whose children have autism note that their children have an intense fascination with trains. When they are little, they often have great affection for the Thomas the Tank Engine cartoons, books, and toy trains, and when they are older, many of them memorize schedules for subway trains. This interest in trains often remains unclear, as many of these children cannot express why they favor certain things. When Alex was little, he enjoyed watching the Thomas the Tank Engine cartoons, and I wondered if the soothing voice of Mr. Conductor mesmerized him. Thanks to his uncle, Alex had a wonderful set of trains that featured Thomas and his friends. I often suspected that he especially liked them because they had numbers, which he holds dearly, on them. Perhaps some children appreciate that they line up orderly, a trait many children with autism find interesting. Lately, I’ve begun to think that Alex’s interest in the toy trains may be linked to his one-track mind.

Studies show that other psychological conditions often co-exist with autism, such as social anxiety disorder or obsessive-compulsive disorder, more commonly known as OCD. These so-called co-morbid conditions that frequently accompany autism may cause challenging behaviors in addition to the impaired language and social skills common in autism. When Alex was eleven years old, we first noticed that his OCD behaviors were becoming more intense and needed to be addressed. His primary obsession was the concept of time, and he would repeatedly ask us what time it was, even though he knew how to tell time. Even after we would repeatedly tell him what time it was, he compulsively would run frantically to a clock to check the time as though he needed visual as well as verbal confirmation. When we discussed this behavior with our family doctor, she understood our concerns and started him on a low dose of the SSRI medication Prozac to address his OCD behaviors. Within several days, we saw a great improvement in his behavior, as Alex no longer needed to ask us over and over what time it was; instead he would calmly check the clock once when he wanted to know what time it was. This came as a huge relief to us to see the calming effect the medication had upon his behavior.

Last year, his psychiatric nurse practitioner decided that Prozac had lost its ability to keep his OCD in check over time and switched him to another SSRI, Zoloft, which generally seems to keep him calm and manage his behavior well. However, when Alex becomes anxious, he will revert to asking the same questions over and over, which tests Ed’s and my patience to the limits. Most of the time, Ed and I are remarkably patient with Alex; however, patience is something we have developed though the years, as I don’t think either of us are naturally patient people. At least, I’m not. Nonetheless, in dealing with Alex’s sometimes challenging behaviors, we have learned that losing our patience with him can be akin to pouring gasoline on a fire. Besides, most of the time that he is trying our patience, we know that he really can’t help it.

Just as when he was younger, Alex focuses upon time and when things will happen. Even though he knows the routines we have created to ease his anxiety and have posted a daily schedule on the refrigerator for him to consult, he still constantly asks us questions about when lunch, dinner, bath time, and bedtime are. He also asks us throughout the day when we are going places and when he can weigh himself. Knowing that he needs us to answer these questions to ease his anxiety, we patiently answer him several times during the day. In case he is just making conversation, we will sometimes vary the discussion by turning around the question and asking him, “When IS bedtime?” Of course, he always knows the answer to the question because he has heard it thousands of times from us.

Although I would like to say that Ed and I always answer these repeated questions calmly and pleasantly, I have to admit that sometimes, being human, we just lose our patience with him. This week, Alex became overly excited about going places and kept asking us, “How ‘bout going places?” to the point I was ready to hand him keys to my car and tell him to go. However, since he can’t drive and I couldn’t find my keys, which added to his frustration and my own anxiety, this was not going to happen. As I frantically searched through my purse and even dumped the contents on the couch, only to discover later they were on the kitchen table, I finally yelled at him, “Shut up, Alex!” Because I rarely say anything that harsh to him, he was stunned for a moment and stopped questioning me. While I’m not proud of losing my temper with him, at least I had vented my frustration, and my outburst made him stop badgering me long enough to find my keys. Another day this week, Alex was anxious because I had gone to the eye doctor, and he kept asking Ed when I would be home. Even though Ed answered him several times, Alex was not satisfied, and he continued asking him again and again. Finally Ed said to him pleadingly yet more politely than I had earlier in the week (or so I’m told), “Alex, please be quiet!” Fortunately, our annoyance did not intensify Alex’s agitation; in fact, he usually seems amused by our rare outbursts, which makes me wonder whether he provokes us just to get a reaction.

While I’d like to always remain as calm and collected as Mr. Conductor from the Thomas tales, sometimes I find myself “cross” like the tank engines of the stories. In fact, at times our life with autism could use Ozzy Osborne’s “Crazy Train,” with its lyrics, “Crazy, I just cannot bear I’m living with something that just isn’t fair,” as our theme song. Nonetheless, Ed and I continue to keep the train on schedule, as Alex keeps it on his comfortable track, always checking the time at regular intervals, chugging along until we reach our destination of healing. All aboard!

“We also pray that you will be strengthened with all His glorious power so you will have all the endurance and patience you need. May you be filled with joy, always thanking the Father. He has enabled you to share in the inheritance that belongs to his people, who live in the light.”  Colossians 1:11-12

Telephone Tracking Two

In last week’s blog entry, I described the various phone calls I made to Alex’s psychiatric nurse practitioner’s office and the laboratory where we have his blood tests done, trying to make arrangements for a blood draw. After talking with nurses and laboratory technicians back and forth, we were finally able to straighten out the details. As they say, “All’s well that ends well,” and the tests came off without a hitch. Thankfully, Alex cooperates nicely with blood draws, and yesterday we were able to do the follow-up tests easily and quickly. Of course, I decided to make a quick call to the lab before we went, which made things go even more smoothly, as the lab technician had everything arranged in advance before we arrived. St. Anthony’s Chesterton Health and Emergency Center has been a godsend to us because all of their staff are kind and pleasant and efficient. Now, we wait for the test results to see if Alex’s increased medication levels are within proper levels. I’m betting that I will have to call his nurse practitioner’s office to get the results this week, but since my telephone skills are sharp, I will be prepared.

In addition to checking on Alex’s medical tests, I have also been dealing with Medicaid by phone the past couple of weeks. Before Christmas, Indiana Medicaid sent me a letter requesting that I fax a copy of Alex’s financial records to them so that they can make sure he is still eligible. Although Alex has limited financial resources, he has a handful of shares of Disney stock his aunt and uncle gave him as a Christmas present a few years ago, and he has a checking account that Social Security wanted him to have as a place to deposit his disability checks. After sending a couple of disability payments to that account, Social Security decided—no surprise to us—that Alex wasn’t capable of managing his financial affairs and named me as his representative. Consequently, his checks are deposited in my checking account so that I can pay for his expenses, and his checking account basically goes unused.  Nonetheless, Medicaid needs to establish that Alex has minimal assets, and they require that I send them statements showing the value of his stocks and the balance of his checking account.

The day after I received the letter from Medicaid, I faxed copies of the financial records to them, as they requested. Imagine my surprise and frustration to receive a letter this month stating that Alex’s Medicaid benefits would be discontinued as of February 1^st due to my “failure” to submit his financial records. Although we have private health insurance that pays for most of Alex’s medical expenses, Medicaid acts as a secondary health insurance for him and pays for his behavior therapy. In the future, Medicaid will pay for his support services, including the day program we hope will enroll him and transportation there, as well as eventually a supported living program. Losing these benefits would definitely have a deeply adverse effect on Alex’s future and would make the hours I spent filling out paperwork and pleading his case meaningless. I knew that I was going to have to intervene right away to make sure Alex didn’t lose these valuable resources.

As I pulled the financial records from his files, I also found a document with a time and date stamp proving that I had faxed the information they had requested in a timely fashion last month. I decided to fax all of these forms once again to prove I had not “failed” to submit them. In addition, I called Medicaid to attempt to straighten out this mess.  After waiting through the options menu and spending some time on hold, I spoke to an agent and explained what had happened. After going through his files, she discovered that they had, indeed, received the information I had faxed last month, but no one had bothered to enter it into the computer. She assured me that she would take care of updating his files, and there shouldn’t be a problem. A few minutes later she called me back to tell me that Alex would not be eligible based upon his resources. I asked her to explain that because I knew that he had the same, if not less, finances that he had when he applied. She told me that he must have $1500 or less. After adding his accounts again, I knew that he had less than the amount she stated, but decided not to argue with her and thanked her for her help.

Concerned that this matter still was not resolved, I decided to call again this week to make sure that Alex’s file had been corrected. Once again, I waited to speak with an agent, who pulled up Alex information and said that all of the data needed was there and that he was under the limit for resources. However, no one had bothered to send this information on to the state, so she assured me that she would take care of forwarding this information. As I did the last time I called the Medicaid office, I made notes of what they told me in case I need this information for future reference. Still not convinced that they have Alex’s information accurately recorded and sent to the proper department, despite their assurances, I will once again call this week to make sure his benefits will not be jeopardized by the careless record keeping of others.

As someone who takes organizing information to extremes, I have little patience with those who do not keep good track of important records, especially when my son’s future could be jeopardized. In talking with other parents, apparently our experience is not uncommon. Parents of special needs children have enough responsibility taking care of their children’s needs without having to supervise agencies who should be helping parents instead of making their lives more difficult by failing to keep track of information and accusing the parents of being noncompliant. I’m sure we will work out this issue soon, and I’m glad I have the organization and tenacity needed to accomplish this task. However, I’m still working on patience. I pray that God will help me with that so that I will learn to wait in peace instead of frustration, especially since I have at least two phone calls to make this week. As I make sure that Alex’s medical and financial needs are met, I’ll simply be fulfilling one of my roles as an autism mom—Alex’s personal assistant.

“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

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