While We Wait

 

Recently, Alex has developed some new routines, and we’re still battling with an old foe. Since all of these begin with the letter t, I thought I’d lump them together this week. The new routines involve Times Square, the Target Café, and therapy, while the old foe is the summer plague of thrush.

As I have mentioned in previous blog entries, Alex loves to watch videos on You Tube. Although he mostly watches country music videos, he also likes to watch clips from television game shows. The past couple of weeks, he has wanted to watch videos from various years of Dick Clark’s Rockin’ New Year’s Eve where they count down the seconds until the new year as the ball drops in New York’s Times Square. Considering Alex’s love of time, calendars, and holidays, I suppose his fascination with watching this annual celebration makes complete sense. In addition, the narrator of these videos also tells what the temperature in Times Square is on that particular New Year’s Eve, which is an added bonus for Alex, who loves weather.  Even though he has watched some of these videos several times, he gets just as excited watching the seconds wind down and the ball drop as the crowds in the videos do when it happened in real time. Moreover, even though Alex and I like Ryan Seacrest as a host, we’ve found by watching these old videos that no one rings in New Year’s Day like the late great Dick Clark.

Along with watching the countdown of the final minutes of each year, Alex has also discovered that he really likes the Target Café. Lately, about once a week, he and I have gone shopping at our local Target store with my mom. Since Alex just likes going places, he doesn’t seem to mind browsing through the store with his mother and grandmother. As a reward for his patience and good behavior, my mom treats him to a Sierra Mist soft drink and a bag of Lay’s potato chips from the Target Café at the end of our shopping trip. Besides enjoying his snack, Alex seems to like sitting in the café and watching people go by. Last week, Ed and I took him to Target, and as we were nearing the end of our shopping, Alex started chanting something softly. Ed couldn’t figure out what Alex was talking about, but I knew what he was saying that he wanted—“Target Café, Target Café, Target Café.” Hence, Ed was introduced to the ritual of stopping at the Target Café at the end of a shopping trip.

The third new routine is therapy--behavioral therapy, to be more precise. We have done a variety of therapies with Alex over the years, including speech therapy, occupational therapy, sensory integration therapy, Floortime therapy, cranial therapy, visual therapy, music therapy, nutritional therapy, and chelation therapy. However, behavioral therapy is new for us because until about a year ago Alex’s behavior was mostly quite good. This summer, we began searching for behavioral therapists with experience in autism, and we were fortunate to find an agency in a nearby town that handles people with autism and that had openings for new clients. Finding a therapist with autism experience is tricky enough, and those who do have autism training often have so many clients they cannot take on any more. One of the blessings of Alex qualifying for state funding this summer was that behavioral therapy is covered by his Medicaid waiver services. Not only are we fortunate to have found a behavioral therapist who works well with Alex, but also the state pays for this valuable therapy.

When we started behavioral therapy in August, most of the work was spent assessing Alex’s behavioral issues. His therapist and her supervisor who also observed Alex and interviewed Ed and me felt that many of his actions were attention-seeking behaviors. For example, if Alex wanted our attention, he found it easier to grab our arm than to tell us what he wanted. After several weeks of observation and gathering data, his behavioral therapist developed a behavior plan. Now that the plan has been written, she has been able to focus on working with Alex one-on-one on a weekly basis at our home. Alex eagerly anticipates the sessions with his sweet and enthusiastic therapist Melissa, who also seems to get a kick out of working with him. While she develops social stories, plays games, and talks with Alex, I sit in another room and try to eavesdrop on their conversations. Apparently, Alex is funny during their time together because I frequently hear Melissa laugh in amusement at his comments. She seems to bring out the best in him because he has been remarkably cooperative and well behaved throughout their sessions. I suspect Alex is happy to have someone other than his parents and grandparents to spend time with him. We’re pleased that Melissa is helping Alex develop his social skills and that he enjoys working with her so much.

While the new routines have been welcome, the hanging on of the annoying fungal infection thrush has been frustrating. Alex was first diagnosed with a yeast infection in and around his mouth in June, and we’ve been trying to clear up the thrush and cheilitis ever since then with anti-fungal medication. After weekly doses of the antifungal drug Diflucan didn’t seem to be clearing up the infection completely, his family nurse practitioner put him on daily doses for two weeks. Although he seemed better, a few weeks later, the symptoms flared up again. Last Saturday, we took him to our local CVS Pharmacy’s Minute Clinic, where a very sweet and sympathetic nurse practitioner confirmed my mother’s instinct that he again had thrush and cheilitis. She gave him two more doses of Diflucan and recommended we take him back to our family nurse practitioner.

On Tuesday, we had an appointment with another family nurse practitioner, who understood our frustration with trying to get rid of the yeast overgrowth and concerns that for Alex’s well being. She decided to do a culture by swabbing his mouth, gave us orders to have a blood test done to see if, indeed, his candidiasis, or yeast infection, is systemic, and prescribed a month of daily doses of Diflucan. We were pleased that she took such an aggressive approach, which is what we wanted. Although we’re curious as to what the test results will show, we’re pleased that Alex seems to be responding well to the medication as his symptoms are improving. We pray that this run of Diflucan will rid his body of the yeast overgrowth that irritates his mouth and throat, making him irritable. Moreover, we believe that once the yeast overgrowth abates, we will see great improvement in Alex overall. Once again, God gives us patience as we wait for Him to do the true healing, but like the eager crowds in Times Square on New Year’s Eve, we can’t help but count down: “Five, four, three, two, one.”

“For I am waiting for you, O LORD. You must answer for me, O Lord my God.” Psalm 38:15

Visiting

Since Alex came home from the hospital in June, he wants to be with Ed or me almost constantly. I think he is making up for lost time, the days he spent in the hospital where we could only see him for an hour or two during visiting hours. Our presence seems to reassure him that he is, indeed, finally home. In fact, the rare times that he is alone, he’ll come looking for us and ask us to “visit,” clearly a reference to his hospital stay. During the months leading up to his hospitalization, he wanted very little to do with me, which was sad and confusing, as he would inform me, “Mommy is leaving now,” which was essentially telling me to “bug off” and leave him alone. Instead, he just wanted Ed to take care of his needs, which I figured was some type of developmental phase where he needed to separate from his mother and identify with his father. Nonetheless, I missed him for a long time.

Now, I spend several hours a day with Alex at his request. Most of the time, we just sit together--sometimes he’s sitting and thinking while I’m reading; other times, he has me read aloud to him. While he used to spend hours reading alone, I think the medications to keep him calm also may make focusing on reading difficult, so he prefers listening to me read instead. Also, I think he enjoys this as an activity we can do together, rather than the solitary act of reading. Sitting with him is an interesting experience because I gain insights into how his mind works as he comments on various things. For example, he often blurts out random foods: guava, cupcakes, salami, bananas, meatloaf, etc. Most recently, he’s added porridge to the list of foods, inspired by his recent revived interest in the story of Goldilocks and the Three Bears, I’m sure. I suppose he’s frequently thinking about what he wants to eat because he’ll also say the names of random restaurants: Noodles and Company, Culvers, The Coop, Martini’s, etc. Although the food blurting continues throughout the day, the restaurant blurting usually only happens in the afternoon, prior to dinner. I guess if he doesn’t have a lot to occupy his mind, food is as good a topic as any. Alex has always shown an interest in food, watching the Food Network Channel from the time he was a toddler and referring to all of their chefs on a first-name basis. Fortunately, his appetite and willingness to eat a variety of foods have always been excellent, and he has not been affected by the dreaded medication side effect of potential weight gain, maintaining his slender, lanky build.

Another activity Alex requests is making random lists. He’ll give me a topic, such as animals, NASCAR drivers, or famous people’s ages, weights, and heights. Sometimes, we’re able to come up with the information on our own, and other times, we have to do Google searches to get the data he wants. Yesterday, we worked on coming up with an animal for every letter of the alphabet. I was amazed how quickly he could come up with the names of animals, often unusual ones, such as armadillo and zebu, especially since he’s never shown a great deal of interest in animals, unlike most children. The only letters that stumped us were u, v, and x, which led us to a Google search for those elusive animals to complete our alphabetical list.

Besides Google searching, we put my laptop computer to good use for other shared pastimes. Alex has always enjoyed online shopping, especially searching for books and gadgets on Amazon. Lately, he’s been checking out everything from NASCAR driver banners to hang in his bedroom to books about time to talking clocks. Fortunately, he had not spent all the money in his Amazon account that his aunts and uncles gave him last December for his birthday and Christmas, so he’s been able to purchase many of these items his heart desires. Of course, he likes to comparison shop, making sure we get the best deal, and this allows him to savor the experience even longer. In addition, I always make him wait twenty-four hours before making his final purchase to make sure that’s how he wants to spend his money, which is another way to make the shopping fun last.  Another favorite website we explore together is You Tube, primarily to watch music videos of his favorite singers. This week, we’ve watched nearly all of country music singer Shania Twain’s videos, and I introduced Alex to one of my guilty pleasures, videos from the 1970’s television show and its manufactured musical group, The Partridge Family. While Ed will probably think I’m corrupting Alex by exposing him to this kind of pop music, I feel Alex needs some relief from the Bob Dylan music that he listens to with Ed.

At some point, Alex’s need to be with Ed and me almost constantly will fade, and we will respect his wishes to be alone again. However, until that time, we will stay close at hand, entertaining him and just being there for him. Sometimes, I will leave him for a few minutes to get something or do laundry, only to find he has followed me, waiting patiently for me to rejoin him. Yesterday, as I was putting clothes in the washer, he followed me down the stairs and asked me to come stay with him. After I started the washing machine, I followed him and honored his wish to join him, which made him happy. Wondering when he thought he might get tired of having me around, I asked Alex how long he’d like me to stay, thinking he’d give me some exact amount of time. Without hesitation, he replied, “Stay forever.” Oh, Alex, I wish I could stay with you forever; I just pray that I’ll be with you as long as you need me.

“And I am sure that when I come, Christ will richly bless our time together.” Romans 15:29

Woman's Day Magazine

As my friends and family know, I have found great inspiration, spiritual strength, and deepened faith from Pastor Joel Osteen’s weekly-televised sermons as well as his best-selling books. At the end of every sermon, he offers a prayer in which he says, “Keep God first place in your life. He’s going to take you places you’ve never dreamed of.” While I’m not certain that I always keep God first place because Alex seems to demand that position in my life most days, I try to honor God in all that I do. I’ve always wondered what those places I’ve “never dreamed of” might be until this week when a feature article about my family entitled “Caring for Alex” appeared in the November 2012 issue of Woman’s Day magazine. Although I’ve known for a few months that this article was being published, seeing the story of my family and our pictures in print is still amazing to me—one of those places I “never dreamed of.”

In July, I was reading through comments people had made on my blog site and noticed one from Marjorie Ingall, who told me that she was writing an article for Woman’s Day about raising an adult child with autism and asked me if I’d be willing for her to interview me. Knowing that I tend to be a bit gullible [Ed is now laughing as he’s reading this because he thinks I’m very gullible. He’s actually right, but I prefer to think of myself as trusting instead of gullible.], I reined in my initial excitement and Googled Marjorie to make sure she was a legitimate writer. [Now Marjorie is laughing if she’s reading this because I never told her I’d investigated her background.] Once I discovered Marjorie’s impressive credentials as a published writer, I e-mailed her and told her I would be happy to talk with her about our experiences.

In our various conversations by phone and e-mail that felt more like old friends chatting than a writer interviewing a subject for research, Marjorie put me at ease in talking candidly about raising a child with autism. Since she had already read all of my blog posts on One Autism Mom’s Notes, she had a good sense of Alex and our family dynamics and how autism affects our lives. Her warm and sympathetic nature made me trust that she would describe us accurately as parents just trying to do what’s best for our special needs child. Keeping the mood relaxed, Marjorie and I spent a good deal of our phone conversations laughing because we share similar senses of humor, and Alex—my favorite topic of discussion—is a funny guy, as he’s proudly told us himself.

While Marjorie was putting together the written part of the article, Woman’s Day Photo Editor Roni Martin contacted me requesting photographs of Alex and our family to accompany the article. As I went through various digital pictures we had of Alex, I realized that we had very few recent photos in which he was not wearing sunglasses. Because his eyes are sensitive to light, he rarely goes outside without his sunglasses, and most of the pictures we had of him were taken outdoors. Nonetheless, I found some pictures and sent them to her. Then, she suggested that they send a photo crew to take new pictures of our family, explaining that the process would take about four to six hours. Knowing that Alex would not be patient for that long, I proposed instead that we take the pictures ourselves and see if they would be acceptable. Understanding of our situation, she agreed to our request and sent suggestions for what we should wear and how the photos could be staged. Since the article would be published in the fall, she recommended that we not wear summer clothes, even though we were taking the pictures in 90-degree weather. She also suggested that our clothes be solid-colored with no patterns, which made me realize that Alex did not own a single shirt without some sort of striped pattern, so we bought him a couple of solid-colored polo shirts at Target for our photo shoot.  In addition, she advised that a park setting works well for the background, and we headed off to our local park, Ogden Gardens, a beautiful place filled with trees and flowers. Fortunately, Alex was fairly cooperative as we took pictures, and we were pleased to have some good photos as a result.

After we sent the new pictures to the magazine, Roni contacted me again to let me know they wanted some pictures of Alex when he was little to help tell his story. Again, I went through our photographs and selected some of my favorites: a family portrait taken shortly before Alex was diagnosed with autism, a picture of Alex and me on the first day of school as he was headed off to special education preschool and I was off to teach my seventh grade students, and probably my favorite photo of Alex taken when he was two-and-a-half years old and happily reading [with his hyperlexic precocious reading skills] the business section of the Sunday New York Times.  Working with Roni was a pleasure because she was so helpful and accommodating.

A few days later, Woman’s Day articles editor Stephanie Dolgoff contacted me to ask some information about the old pictures and a few more questions about Alex. As she explained to me, this article was “especially close to [her] heart” because she has an older brother with autism who is now in his forties, and her parents had gone through experiences similar to those Ed and I had. Moreover, she expressed her desire that this article would “raise awareness about adults with special needs and their caregivers.” I appreciated her empathy, devotion to telling our story accurately, and her kindness.

Before the article could go to press, Maddi Scheier from Woman’s Day needed to fact check the article by reading aloud passages to me over the phone and making sure everything was true. Just as everyone else had been in this project, Maddi was friendly and pleasant, putting me at ease with her friendliness as well as New York accent that reminded me exactly of Ed’s sister. Now that all the pieces of the article had apparently been assembled, we waited until this week for the November issue to arrive at newsstands.

I suspect that my dad has been checking stores for the appearance of the November issue ever since October arrived, and apparently he talked with a CVS Pharmacy clerk who told him that grocery stores typically receive the new issues about a week before other stores. Somehow, he knew that grocery stores in our area were supposed to have the new issue on sale around noon this past Wednesday, and he immediately headed out in search of a copy for my mom and him and one for Ed and me. Successful in his quest, he immediately brought me my copy shortly after noon on Wednesday, and I was very pleased with the article. A surprise bonus was that the Woman’s Day Editor-in-Chief Susan Spencer previewed the article in her editor’s column with a very warm and thoughtful note about us. Needless to say, I have been very impressed with and appreciative of the Woman’s Day staff who worked on this article and showed great understanding and compassion, which has been a blessing.

As happy as we were with the article, we were overwhelmed by the response of our family and friends, who have shared their enthusiasm for our story being told in Woman’s Day. From my brother and Ed’s sister who couldn’t wait to read the article, so they read it in the parking lots of the stores where they purchased their copies, to the kind e-mails and hugs from friends and family, to my very sweet first hour seventh grade honors English class who applauded when my principal told the school on the morning announcements about the publication of the article, this has been a week where I have been reminded how blessed we are to have such supportive and loving people surrounding us. Although I wish our lives had never been touched by autism, I am thankful for the people whose love has blessed us and for those we have met on the journey. Just as I pray that my blog will help others dealing with autism, I also hope that the Woman’s Day article will help families like ours. And as I always promise in my prayers, “Lord, I will give You the glory!”

“Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesians 3:20

Parent or Guardian

Recently, I read two excellent blog entries written by mothers of children with autism who explain the process involved in being named their children’s legal guardians once they reach the age of eighteen.  Both mothers candidly describe the heartache they feel in taking legal action to make sure they will be able to make critical decisions for their children who cannot make those decisions for themselves. As Kim Stagliano explains in “Autism Sucks: And Then I Die”: “We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself.”

Similarly, Liz Becker shares her internal conflict about becoming her adult son’s guardian in “Guardianship and Autism,” noting, “In order to become the legal guardian and conservator for my autistic son, the court had to first find him incompetent to manage his own affairs. It was (and still is) a very emotional process. It is something that I had to choose to initiate because I knew Matt needed me to do it--but that doesn’t mean I took it in stride. It literally took years of thoughtful contemplation to even begin the legal process.”

Although guardianship laws may vary somewhat from state to state, the State of Indiana’s website explains the process quite clearly under the Family and Social Services Administration page: “Guardianship is an important consideration when young adults with developmental disabilities reach age 18. It is important for parents to realize that under the law everyone is considered to be an emancipated adult (their own legal guardian) at age 18, regardless of their disability. If the parent believes it is necessary for them to gain or maintain guardianship of their adult child after the age of 18, this can only be done through a court proceeding, which may be lengthy and expensive. Any action to establish guardianship of an adult with a disability must be filed in the probate court of the county of residence of the person for whom guardianship is being sought. Filing for guardianship is generally done with the assistance of an attorney, and includes a petition, followed by a hearing to prove that the person is incapacitated (unable to serve as his or her own guardian). Guardianship by another person by definition restricts that individual's rights and freedoms as a citizen, and should therefore not be entered into without serious consideration, including exploring alternatives which may better suit the individual's needs while still providing legal protection.”

Some of these rights that can be restricted once a disabled adult is deemed incapacitated or incompetent and requiring a legal guardian include the right to obtain a driver’s license, the right to own property, and the right to vote.  If parents wish to have some control over their disabled adult child’s affairs but not obtain guardianship, they may have legal papers drawn naming them as health care representatives and/or giving them power of attorney. In addition, Social Security may name a parent as a representative payee to oversee the distribution of disability benefits; similarly Medicaid may also name a parent to act as the adult child’s health care advocate. However, at times the adult with a disability may be required to sign his or her name on paperwork.

Although Ed and I have discussed and debated the pros and cons, we have opted not to seek legal guardianship of Alex at this point. Certainly, I respect the decision of those who have sought legal guardianship of their adult children and can imagine what a difficult decision that must be. When Alex was hospitalized last spring, we realized for the first time that we could no longer make some health care decisions for him since he was an adult. Therefore, we quickly had an attorney draw up legal papers naming us as Alex’s health care representatives so that we could make decisions regarding his medical care. I would recommend that parents of children with autism have this paperwork in place and ready when they turn eighteen instead of being caught unprepared in an emergency, as we were. We had assumed that as Alex’s parents, we would be able to make medical decisions for him, but we were wrong. Now that we have the legal papers naming us as Alex’s health care representatives, we take copies with us to every medical appointment so that we can be directly involved in Alex’s health care.

When we were filling out the countless forms last spring to obtain disability benefits for Alex, the question arose over and over as to whether we were Alex’s legal guardians. I found this somewhat surprising because none of my friends with adult children who have disabilities have sought legal guardianship for them. Nonetheless, I asked one of Alex’s caseworkers how common parents having legal guardianship is for adult children with autism, and she said that those whose parents could afford the legal fees typically obtained guardianship.  Since Social Security has named me as Alex’s representative payee to oversee the spending of his disability benefits, and Medicaid has approved me as his health care representative, we don ‘t feel the need at this point to seek legal guardianship. The government allows us to manage his finances and benefits, and the health care representative legal papers permit us to make decisions regarding his medical needs. For everything else, Alex is capable of signing his illegible signature, and he seems proud that he can do that for himself.

With the upcoming elections, Alex eagerly awaits his first time to vote for the President. As he has in every election since he turned eighteen, Alex considers the candidates and issues before making his decision and exercising his Constitutional right to vote. Just as I have in the past, this year I will again help him apply for an absentee ballot, for which he qualifies as a disabled adult, and he will proudly mark his ballot at home. To think of denying Alex his right as a citizen of the Unites States and his joy in participating in one of the rites of adulthood reconfirms our decision not to seek legal guardianship for him. In addition, the eternal optimist in me hopes that someday he will be more independent and not need us to make decisions for him. Relying on faith, we pray that having him declared incompetent will never be necessary, and we know with God all things are possible, including healing that would allow Alex to enjoy fully the freedom we cannot deny him at this point.

“Rabbi,” His disciples asked Him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

“It was not because of his sins or his parents’ sins, “ Jesus answered.  “This happened so the power of God could be seen in him.” John 9:2-3