Sunday, January 27, 2013

Alex's Questions

As I explained in my last two blog entries, “Telephone Tracking” and “Telephone Tracking Two,” I’ve been spending time on the phone lately, trying to find information regarding Alex’s blood tests to monitor recent medication changes and his Medicaid benefits. Fortunately, my tenacity paid off, as we received a letter from Medicaid this week stating that Alex still qualified and would continue receiving his disability benefits. This came as a huge relief that his file had been updated correctly. Also, I called his psychiatric nurse practitioner’s office this week to get the results of his blood tests, only to discover that they had never received the test results. Then, I had to call the lab to request his results be faxed (or faxed again, as I’m not sure what had happened) to the nurse practitioner’s office. Once they received the results, her nurse called to tell me that the results were normal and that he should continue on the current medication dosages. Again, this news was a blessing because he is responding well to the slight increases in medication, and we were thankful that his blood tests indicate no problems with these changes. Although I would have preferred that gaining information about his benefits and health had not required so many phone calls, I’m pleased that in the end, the news was good.

While I’ve been on the phone acting as Alex’s personal assistant, he’s been busily coming up with questions for me to answer. When he first came home from the hospital this summer, he seemed to be in a mental fog, his senses dulled by the medications needed to keep him calm. Over the past several months, he’s gradually emerged from this drowsy state, and we’ve been pleased to see his personality and curiosity return. In fact, when he was little, Ed used to call Alex “Mr. Curious” because he was always checking out things and asking questions about them. We enjoy his inquiries because not only do they show he’s alert and aware, but they also give us a glimpse into how his mind works.

One area of his questioning has to do with the past. He has an interest in things that happened before he was born or things he can’t remember because he was too little. As I’ve explained in previous blog entries, Alex qualifies everything by numbers, so calendars and clocks and dates are very important to him. The past few weeks, he’s been asking about when various businesses in town opened. Specifically, our town has a new hospital that opened in August, and Alex wanted to know more about the old hospital it replaced, especially since he was born in the old hospital. Fortunately, I was able to find some information online about the old hospital and when it opened, which was exactly what Alex wanted to know. In addition, he has had a recent fascination with the part-time job I had while I was in college as a waitress at the Big Wheel Restaurant. Not only did he want to know the exact dates when I started and stopped working there, but one day he also wanted me to tell him everything that was on the menu. This seems to be another nostalgic exercise for him because although the Big Wheel closed a few years ago, Alex remembers going there when he was younger. To enhance his trip down Memory Lane, he has been asking me to fix one of the special dishes from the Big Wheel, the Wheel Steak.  Perhaps eating a familiar dish from the restaurant jogs his memory so that he can remember the times he spent at the Big Wheel. Now I need to teach him about leaving a tip for the waitress.

Besides reminiscing, Alex has also been spending a lot of time thinking about theological concepts, but, of course, they reflect his unique perspective. Lately, he has a great deal of curiosity about what God can do, where heaven is, what it will be like, and what we will be like when we get there. Although I have no good answers to his good questions, he has been satisfied when I have told him that only God knows or that he’ll have to wait and see when he gets to heaven.  Since I’ve been intrigued by some of the questions he’s posed, I’ve been jotting them down whenever he asks them. Here are some of Alex’s recent inquiries:

“Has God used the graphing calculator before?”
“Does God know all the pi digits?”
“Where are heaven and hell?”
“What is the address for hell?”
“How long does it take to get to heaven?”
“Can you call heaven? What’s the phone number?”
“Is there a”
“What road goes to heaven?”
“Are there clocks in heaven? Will there be time in heaven? Do they have stopwatches in heaven? Do they have timers in heaven?”
“How much will we weigh in heaven?”
“What will our heavenly bodies look like?” (after I told him we’d have new bodies in heaven in response to his question about weight in heaven)
“Will you have birthmarks in heaven?”
“What color will your eyes be in heaven?”
“What voice will you have when you get to heaven?”
“Can you sleep when you get to heaven?”
“Will people have tempers in heaven?”

Besides all of his interesting questions about God and heaven, Alex has also asked some things that make me wonder how his mind works. One day, he suddenly asked, “Do dogs have better memories than cats?” Even more puzzling was the day he apparently wanted to try parenting and asked, “Can you [meaning “I”—he still reverses pronouns] pretend to have a baby?” As he has been more alert, he’s paying more attention to what people are saying in person or on television, which has made him ask about words he doesn’t know. For instance, while watching the television show The Big Bang Theory the other day, he heard one of the characters use the word befuddled and asked us what that meant.  I was tempted to tell him that I was befuddled when he asked about pretending to have a baby, but decided against that. Finally, another question he’s frequently been asking me lately is when I’m going to retire. I’m not sure if he thinks I’m old, or if he’s just looking forward to my being home all the time.  I guess he figures that if I retire, that will free my time to make phone calls on his behalf and answer all his questions about life. In the meantime, I’ll keep working at the balancing act of my part-time teaching job and my full-time job of being Alex’s advocate, teacher, and mom, which is my favorite job of all, especially when he entertains me by asking questions that make me think about all the good things we have ahead when we actually know what heaven will be like.

 Call to me and I will answer you and tell you great and unsearchable things you do not know.” Jeremiah 33:3

Sunday, January 20, 2013

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 1st 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

Sunday, January 13, 2013

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

Sunday, January 6, 2013

New Year's Resolution

This past week, as we celebrated the new year, 2013, annual discussions about people’s resolutions arose in the media repeatedly.  Indeed, the beginning of a year seems to be a good time to break old habits and become a better person. My good friend and fellow mom blogger [To read her blog, Real Housewife of the Bluegrass, click here.], K. C. Wells wrote a terrific entry this week on this topic that made me think about my own goals for 2013. Touched by the tragic loss of lives at Sandy Hill Elementary, she writes about worrying less about her to-do list and becoming “more mindful” in how she interacts with her family. One of her comments especially resonated with me, “Someday, my kids aren't going to remember how many things I accomplished in any given day or how clean their rooms were.” She goes on to give examples of the things she hopes her children will remember—the good times spent together and the values she instilled in them.

In raising a child with autism, too many times I get caught up in my to-do list, just as parents of typical children do. However, my list over the years has consisted of researching new treatments, finding various therapists, filling out countless forms to get services, planning homeschool lessons, and comparing notes with other parents. Over the years, I have found myself telling Alex, “Just a minute, Mommy is almost done” as I complete one of these tasks before doing something he has requested of me. Although I’m sure learning to wait has been a good lesson for him to learn, I have often felt guilty that I was preoccupied with other concerns when I should have just focused on spending time with him.

In addition to my duties as an autism mom, I have tried to keep our home neat and organized. While I think that keeping the house free of clutter helps keep my mind uncluttered, I know that my fears of what other people think of me probably motivate my need to clean even more. The prideful side of me would want others to think, “She has a child with autism and still manages to keep a neat house!” In the tumultuous times, when I feared we might need help from the police or paramedics to help calm a hysterical Alex, I kept an especially organized house, never wanting these people to think, “No wonder her kid is out of control; did you see what a mess her house is?” However, probably the biggest motivator for keeping things neat has been my need to find rapidly something Alex decides he wants, knowing that he may become upset if I can’t find it as quickly as he’d like. While all of these reasons are valid, I still put more pressure on myself than anyone else expects of me, and I need to get off my case.

When I was growing up, my mom’s priority was spending time with her three children—reading to us, talking with us, playing games with us, and refereeing our arguments. Although our house was clean, neatness was not as important. Mom would often say, “I can be neat, or I can be nice.” As kids, we were thankful that she chose the latter because we didn’t care about being neat; we preferred her pleasant company to having an immaculate house. Hanging in the kitchen of the house where I was raised, she still has a plaque with the poem “Excuse This House, “ which reads as follows: 

“Some houses try to hide the fact
That children shelter there.
Ours boasts it quite openly,
The signs are everywhere.

For smears are on the windows;
Little smudges are on the doors.
I should apologize, I guess
For toys strewn on the floor.

But I sat down with my child,
And we played and laughed and read
And if the doorbell doesn’t shine,
His eyes will shine instead.

For when at times I’m forced to choose
The one job or the other,
I’d like to cook and clean and scrub,
But first I’ll be a mother.”

With my mother as role model, this year I’m going to remember that my primary role in life is to be Alex’s mother. Instead of worrying about my to-do list, I’m going to start focusing on my to-be list, enjoying the moment at hand, knowing that eventually things will get done. Together, Alex and I will laugh as we watch episodes of his favorite show, The Big Bang Theory, and my favorite show, The Middle. I’ll gladly read aloud his beloved Veggie Tales’ book Time for Tom and exaggerate all the voices in Goldilocks and the Three Bears to make him smile. Whenever he asks me to “tuck you in,” I’ll be pleased that my wrapping him in blankets makes him feel secure. We’ll look up things together on Google, satisfying his curiosity while giving me a glimpse into how his mind works. And we’ll watch over and over again his favorite You Tube videos showing the New Year’s Eve ball drop in Times Square in New York City, counting down as though it were new each time. Perhaps watching that New Year’s Eve tradition will remind me how precious time really is and how grateful I am to be able to spend time with Alex. Now that’s a resolution worth keeping.

“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