Right Place, Right Time

I don’t believe in coincidence. Too many remarkable yet seemingly random things have occurred in my life that remind me the hand of God is orchestrating events for my benefit or so that I may do some good. For instance, when I was pregnant with Alex, I developed a rather rare autoimmune blood disorder causing my platelet count to drop, leaving me at risk for bleeding. (Thanks to the healing of God, I no longer have this chronic disease.) To rule out other conditions, I underwent a bone marrow biopsy, a procedure often characterized as quite painful. Thankfully, I found the experience did not live up to its hype and was more of a feeling of pressure than of pain. Unfortunately, my test results came back inconclusive, requiring a second bone marrow biopsy. At the time, I was frustrated that I had to go through another biopsy, but I was more upset that I would have to wait longer for results that would rule out a potentially life-threatening condition.

After the second biopsy, which was as uneventful as the first, the doctor asked me to take the sample to the lab myself, which struck me as odd at the time. When I arrived at the hospital lab, I explained to the clerk that I needed to drop off a bone marrow biopsy, which seemed to surprise and horrify her at the same time, and she quickly called for a technician to deal with the situation. As I waited for someone to take my bone marrow sample, a young woman appeared behind me and politely told me that she had overheard me tell that the clerk that I’d had a bone marrow biopsy, and she wondered what that was like. She wasn’t being nosy; she explained that her little girl needed to have one and had heard they were terribly painful. As a mother, she wanted to be able to prepare her child and was worried about what she might have to experience. At that moment I knew why I needed to have two bone marrow biopsies and had to carry the second one to the lab myself—so that I could reassure a young mother that her daughter, like me, would get through this testing fine. As she thanked me, I could see relief on her worried face, and I knew that God had placed me at there at the right moment so that I could be of help.

When Alex was hospitalized two years ago for extreme anxiety and aggression, we were terribly upset that he would have to be away from home for the first time in his life yet knew he needed intensive intervention to get better. While we waited in the emergency room for the nurse from behavioral medicine to come get him to admit him for in-patient treatment, I prayed for a sign that we were doing the right thing. As I looked up, I saw that the nurse, who became one of Alex’s primary caregivers during his hospitalization, was wearing her identification tag on a lanyard nearly identical to the one I wear for my job. Our lanyards, emblazoned with the name Jeff Gordon and number 24, show our support for our favorite NASCAR driver. I knew at that moment God had sent her to mother Alex in my place when he needed specialized care we could not give. That small sign in the form of a fellow NASCAR fan reassured me that everything would eventually be fine.

A couple of weeks ago, I was chatting with one of the technicians at the pharmacy where we get Alex’s medications. As she saw the name of the psychiatric nurse practitioner who prescribes his medicine, she told that she also worked part-time at a medical facility in town and had heard that Alex’s nurse practitioner was moving her practice here. A few days later, we received a letter from his nurse practitioner confirming what the pharmacy technician had told me: she is moving her office to our town this summer. This change means that we will no longer have to drive forty minutes to see her; she will only be ten minutes away from our home. While she could have moved her office to several towns in the area, she chose to practice here. I know this move was not coincidental; God made this more convenient for us.

Yesterday, I had another one of those being at the right place at the right time experiences. Every few months, we have to take Alex for routine blood tests to make certain the medications he takes are the proper dosage and are not affecting his metabolism adversely, especially his liver and kidneys. Fortunately, Alex eagerly anticipates blood draws; he never minds having medical procedures and finds them strangely entertaining. I think we have been blessed to work with medical personnel who have always been kind and gentle with him so that he has no fear of doctors and medical procedures. In addition, I’m always tried to schedule appointments carefully so that he never has to wait long, which can make him anxious. Fortunately, we have also found a nearby lab where their kindness and efficiency always makes blood draws easy for Alex.

When we pulled into the parking lot, Ed and I noticed that the car parked in front of us had an Autism Awareness license plate, which caught our attention. After the registrar quickly processed our paperwork, a lab technician whom we had not seen before treated Alex very kindly and seemed to know instinctively how to work with him, even though we had not mentioned his autism, as we often do. Once again, he made us proud as he handled the blood draw calmly, never complaining a bit. As we were leaving, we thanked the lab technician, who commented that she has a son like him. I then noticed that her identification card lanyard was decorated with the autism puzzle pieces logo and realized that she, like me, is an autism mom. We could have taken Alex anytime to the lab, which is open 24/7, but we were supposed to meet this mom.

While Ed and Alex went to wait in the car, I talked to her briefly, and we compared notes. Although her son is younger, she has experienced many of the same things we have. As she expressed some concerns about recently putting her son on medication, I was able to reassure her how much the same medication had helped Alex. In a matter of minutes, we had bonded because we shared a devotion to our sons with autism, and we could empathize because of our similar experiences. After she had asked me a few questions, I sensed that she wanted to talk more, but we both knew that we didn’t have the time right then to do so. I wrote down my e-mail address for her so that she could contact me, which she seemed to appreciate, and she told me to ask specifically for her anytime Alex needed lab work. Once again, I knew that this meeting was not random; God intended for two autism moms to come together to help each other. Although I am confident that God always directs our steps, whenever these “coincidences” occur, He reminds me that His plan for our lives is good, reassuring me that in the end, everything will be all right.

“…He makes everything work out according to His plan.” Ephesians 1:11

Lab Tests

As I explained in my last blog post, Alex has been dealing with a chronic case of thrush for over a year. Despite several trips to doctors and urgent care clinics along with a variety of antifungals, we keep trying to get rid of this stubborn candida in his mouth. Last weekend, his doctor decided to try another antifungal medication to see if it may be more effective. In addition, he has concerns that the thrush will become resistant to the one medication we know works, Diflucan. We started the new medication this week, and so far, Alex seems to be responding without any negative side effects. Hopefully, this will be the one that finally knocks out the fungus for good. However, this may be a slow process, as his doctor gave enough refills for six months of this medication.

Since antifungals can affect liver function, Alex’s doctor wanted a blood test run to make sure the medication was not causing any damage. Last Sunday, we took him to the laboratory where we have his routine blood tests done because we never have to wait long, and their staff are friendly and pleasant. As they rapidly processed Alex’s paperwork, he happily watched a football game on the big screen television in the waiting room. Within minutes, the lab technician came to get us to draw Alex’s blood, and we recognized her because she has drawn his blood for previous tests.

Before we began, we reminded her that Alex does very well with blood tests; in fact, they never seem to bother him at all. As she placed the tourniquet around his upper arm before drawing the blood, she told him that she didn’t like tourniquets “because they hurt.” I’m not sure why she put such a negative spin on this step necessary to the blood test, so I quickly told Alex that they never bothered him in the past. Before she stuck the needle in his vein, she then told him that it would “just hurt for a minute.” Alex looked at me, and I reassured him that it would only be a little stick for a second, which was true and less upsetting. As always, he did great while his blood was being drawn, never flinching or complaining. After she was finished, she placed a bandage on his arm and instructed us to keep the bandage on for about twenty minutes. I told her that Alex never bled more than a pinprick after blood tests, and she replied, “Some people tell me that, too, and then they look to see blood running down their arm.” As my mom would say, this lady was a real “crepe hanger,” finding all the worst-case scenarios in a situation. Fortunately, I know Alex much better than the technician does, and he handled the test beautifully despite her frightening comments. Thankfully, blood did not run down his arm, and he seemed unfazed by the lab technician’s warnings.

In addition to his blood tests, I had asked Alex’s doctor about running a test his childhood doctor had done several times in the past, the Great Plains Laboratory organic acids test with yeast sensitivity and culture. This test assesses intestinal yeast and bacteria and determines which medications and supplements best treat the condition. Although Alex’s doctor was not familiar with the test, after showing him previous test results, he agreed that this test would be helpful in treating Alex’s chronic yeast overgrowth. With his authorization, I ordered the test kit, which arrived on Friday. Since we had not done one of these tests for several years, I had to refresh my memory as to how the urine and stool collection were to be done to make certain the results were accurate. For example, certain fruits, namely apples, grapes, raisins, pears, and cranberries, and their juices must be avoided for twenty-four hours prior to the test. The samples must also not come in contact with water; therefore, the “nun’s cap” specimen collector I purchased several years ago for tests makes the process easier since it fits nicely in the toilet. With all the paperwork completed and instructions clear, I was ready to play amateur lab technician with the single rubber glove they sent me. (Why they don’t send two gloves has always been a mystery to me.) Now, the rest was up to Alex to produce the samples.

Just as he is a trouper with blood tests, Alex is amazingly cooperative about urine and stool tests. In fact, he gets excited about these tests, asking when we’re doing them and when we’ll get the results. I suspect that he likes the numerical statistics that come with lab reports, but he also tells me that he likes the tests “because they’re rare and special.” His enthusiasm helps me deal with the gross factor of collecting the samples, especially the stool sample that needs to be made into a slurry before sending it to the lab. I’ve discovered the old saying to be true: to paraphrase, the more you stir it; the more it stinks. Nonetheless, Alex produced a good stool sample yesterday, and I managed to produce the slurry without gagging. The second part of the test required collecting his first morning urine, and this morning, he came through with flying colors, giving way more than was needed. Once again, I collected his sample, placed it in the test kit container, and was thankful we were able to complete this test easily. Tomorrow, we’ll have it shipped to the lab and await the results and hope to gain insight into what is lurking in Alex’s gut. While I wish that Alex didn’t have to deal with the yeast overgrowth that has chronically plagued his digestive tract, I’m thankful that we have a doctor who will aggressively pursue curing him and that Alex handles lab tests fearlessly and even happily. And now, as we so often do with Alex, we just wait to see what the tests reveal.

“Search me, O God, and know my heart; test me and know my anxious thoughts.” Psalm 139:23

Normal

A common expression autism parents hear is the saying, “Normal is just a setting on the dryer.” Because life with autism is often anything but normal, this quote is intended to offer comfort, indicating that the concept of “normal” is often overrated. Although we wouldn’t trade Alex for the world, we often long for the normalcy of life that autism frequently denies us. Especially in May and June, I have to fight my feelings of jealousy toward people whose children are “normal” when I see their pictures on Facebook enjoying proms, graduations, weddings, sports, and vacations. Certainly, we are grateful for the progress Alex has made, but human nature makes us wish for an easier life, not just for Ed and me, but for Alex, as well.

This week emphasized the value of normal when we took Alex to the doctor for his annual physical. Since Alex receives disability benefits from the state, we must have a doctor assess his status and health each year. On one form, the doctor must confirm Alex’s disability as a diagnosis of autism with impulse control disorder and obsessive-compulsive disorder. These conditions qualify him as having a developmental delay, something that strays from the norm. On another form, his doctor must assess his physical health by checking a box marked N for normal or AB for abnormal for each body part or system. Thankfully, the doctor was able to mark N for everything for Alex, who is generally quite healthy, except for neurological and speech, which he marked as AB, or abnormal, with an asterisk “due to autism.”

In addition to filling out the forms we needed, Alex’s doctor went over recent test results with us. Because of the various medications he is taking, he needs to have blood tests every few months to monitor any possible side effects. Not only are we thankful that Alex always complies nicely with having his blood drawn for the tests, but we are also pleased that his test results always come back in the normal ranges, indicating that he is healthy and that the medications do not seem to affect him adversely. His most recent tests revealed that all of the results were once again in the normal range, which pleased us. In addition to the blood tests, we had also done a 24-hour urine collection to test whether Alex had any heavy metals in his system. When he was eleven years old, we discovered through urine testing that Alex had high levels of the toxins arsenic, mercury, lead, and aluminum. This led us to two years of chelation therapy with the medication DMSA, a sulfur-based compound that rids the body of toxins. Since we had not tested him in several years, we thought that checking his levels would be wise to see if any toxins had built up after completing chelation. Once again, we were relieved to discover that all of his levels on this test were normal, as well. The only thing that marred this good news that everything was normal was Alex’s abnormal frustration with having to wait in the doctor’s office, which is part of our life with autism.

Aside from the medical tests that indicate Alex is doing well in spite of autism, we have recently seen improvements in his thinking and language that suggest his brain is working better. Because his medications that help him deal with anxiety and aggression keep him sedated, Alex has not been as sharp mentally as he used to be. However, we have noticed that he seems to be regaining his perceptive skills lately, making comments on things he notices and asking interesting questions again. In the past, Alex liked to make proclamations that something was rare, and he has started doing this again, saying things when we’re driving, such as, “It’s rare for the speed limit to be 25 [miles per hour]; it’s usually 30 or 35 or 20 in a school zone.” Another day this week as he was looking out the window watching cars go down our street, he commented, “Purple cars are very rare.” In addition, he has been asking unusual questions, including, “Can we get some food from a gas station?” Food has been a big topic with him this summer, as anytime we go someplace, he will ask, “Will there be food?” He also makes very specific requests for food he’d like to eat, including asking me recently to make shish kebab for dinner. While these comments may not seem remarkable, to us they represent a return of the alert and observant Alex who was overwhelmed by anxiety and then sedated by medication for many months. During those difficult times, we missed his observations and comments that revealed his unique perspective on life. Once again, we begin to see how his mind works, and we welcome the return of the bright, funny, and clever person Alex truly is. For us, that is the normal we know, and while we aspire to the more traditional concept of a normal life, we feel blessed to regain what we thought we had lost and appreciate the comfort of the familiar as we hope for even better.

“Then you will have healing for your body and strength for your bones.” Proverbs 3:8

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

Telephone Tracking

In a blog entry from April 2011 entitled “Survivor,” [To read this entry, click here.] I described my love of reality competition television shows, such as The Amazing Race, Dancing with the Stars, and The Apprentice, and I suggested a challenging season for a perennial favorite—Survivor: Autism. For this season, contestants would have to complete tasks autism parents regularly face, such as fighting insurance companies for benefits and searching for the best therapies and interventions to help their children, as well as patiently dealing with their children’s unusual behaviors, including watching videos repeatedly. This week, I realized that one more challenge could be added to my proposed reality show: "Telephone Tracking," in which contestants armed only with a phone try to get needed information as quickly as possibly without losing their tempers or their sanity.

One of these tasks would involve tracking down medically related information. About a week ago, I called Alex’s psychiatric nurse practitioner’s office with concerns that he was jittery upon awakening, like someone who had drunk too much coffee. He would physically shake and tell us that he was “nervous.” As with many medical offices, to speak with a human, I had to listen first to the recording that warns the caller, “If this is a medical emergency, please hang up and dial 911” before I could speak with one of the nurses. After explaining Alex’s condition, the nurse relayed the message to the nurse practitioner, and the nurse called me back promptly, which I appreciated. Thinking that Alex’s bedtime medications were not carrying him through the night until his morning medications became effective, his nurse practitioner decided to increase slightly two of his bedtime medication dosages. This change made complete sense to me, and I was glad she was willing to make this adaptation without needing to see Alex first. To monitor the effects to these slight modifications, she also wanted him to have a blood test after one week to check the levels of these two drugs to make sure they were within proper ranges. I asked the nurse to send lab orders to the lab where we have taken Alex the past several months to have blood draws, and she told me she would take care of this.

Because my goal is to keep things always moving smoothly for Alex, I decided to call the lab a few days ahead of the blood draw to make certain that they had received the orders from the nurse practitioner’s office. This lab test requires fasting, which meant that we would be taking Alex as soon as he awakened and before he took any of his morning medications and before he’d had anything to eat. I didn’t want us to get to the lab and have any paperwork confusion while we were also dealing with a hungry kid in need of his medications. When I called the lab, they checked through the records and did not have orders for a lab test for Alex, so I had to call his nurse practitioner’s office again, this time armed with the phone number of the lab. The nurse told me she would check his file and call me back. Once again, she returned my call quickly and informed me that they had sent the orders to the wrong lab. I asked her to send them to our chosen lab, and she assured me that she would do so. After waiting a few hours, I once again called the lab to see if they’d received the orders, and they told me that the nurse practitioner’s office had faxed them that afternoon.  So, after four phone calls, we seemed to have everything straightened out for Alex’s blood tests.

On Wednesday morning, we waited for Alex to awaken so that we could take him immediately to the Chesterton Health and Emergency Center for his lab work. Once we arrived, we were pleased to see that we were the only ones in the waiting room, and Alex happily watched the big screen television with Ed as I completed the necessary paperwork with the registration clerk. As she was typing in the information, she asked me, “Is his doctor’s office open right now?” This made my stomach turn, as I suspected some crucial piece of information was missing. I told her that I knew his nurse practitioner was likely at the hospital doing her rounds in the morning rather than being at her office. Then I asked why she needed to call, and she said that the office had failed to provide a diagnosis code for the testing, which insurance would need. Immediately, I told her that his diagnosis is autism, which is code number 299.0. She still seemed a bit hesitant, and I more assertively told her that every test we had done there had been under the 299.0 diagnosis. Apparently, I was convincing because she went ahead and completed the registration process without calling the doctor’s office.

After that, the lab technician called us back to do Alex’s blood draw, and he, as he always does with lab tests, handled the procedure amazingly well, calmly sitting still the entire time. Moreover, he didn’t even flinch when the needle went in his vein. The lab technician was efficient and pleasant, and we were relieved to have that task behind us. One surprise in all this, however, was that they told us his nurse practitioner wanted the test repeated in a week, which her nurses had not conveyed to us in the four phone calls I had with two of them.  And so, we will do this again later this week, and hopefully Alex will be just as cooperative as he was last week.  On a positive note, the change in medication seems to be helping Alex in the morning, so the efforts I’ve made through the various phone calls have been worth my time. Also, the lab has the orders for the upcoming test, so I won’t need to make phone calls regarding that. However, I’m betting that I will have to call the nurse practitioner’s office to get the test results. It’s a good thing my telephone communication skills are polished so that I can track down the information I need to help Alex. I realized this again later this week when I received a letter from Medicaid stating that Alex’s benefits would be discontinued because of my alleged “failure” to send them financial records they needed. This put my phone skills and patience to the test once again, but that’s a story for next week’s blog. To be continued…

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.” Matthew 7:7-8