Sunday, April 7, 2013

A Week in the Life with Autism

This past week began Autism Awareness Month, and many people whose lives have been touched by autism have used this time to make others more cognizant of this epidemic. For parents of children with autism, awareness involves more than wearing the distinctive autism puzzle-piece logo or lighting blue lights. Autism awareness is a way of life for us. Yesterday I read an excellent blog entry written by an autism mom who detailed a typical day in the life of her family. [To read this article, click here.] Impressed by her devotion and her willingness to share what her life is really like, I decided to try and do the same. However, I got bogged down thinking about how much time we spend giving Alex pills and fixing food for him throughout the day, as well as helping him with tasks he cannot complete on his own. Instead of providing an hourly report as she did, I decided to write about the highlights of our past week so that others can see that having a child with autism—even an adult child, like Alex—entails planning, coordinating, and supervising in ways different from those of parents of typical children. With that in mind, here is a glimpse of last week with the Byrnes.

Saturday—We had a 10:00 appointment with Alex’s new doctor, who wanted to see him a month after his last visit to see how he was progressing with the supplements he had recommended. After I explained how we had gradually phased in vitamin D, gentian violet, probiotic with prebiotic, and vitamin C over the past few weeks, the doctor carefully examined Alex. Fortunately, the yeast overgrowth in and around Alex’s mouth has improved, but he still has some thrush and cheilitis. The doctor suggested increasing the doses of vitamin C and probiotic/prebiotic and gave us a prescription for the antifungal drug Diflucan. He also noted the acne on Alex’s face and recommended a progesterone cream to decrease the inflammation and prevent secondary infection. We were once again impressed with this young doctor’s enthusiasm about making Alex healthier and his compassionate manner.

Sunday—Alex seemed pleased with the contents of his Easter basket. Since he is on strict gluten-free and milk-free diet, we always have to be creative when it comes to treats for him. Fortunately, he is a fan of Kraft Bunny Mallows marshmallow bunnies, jelly beans, and marshmallow Peeps (specifically the blue bunnies), all of which are allowed on his diet. In addition, I found him some nice paperback books in the children’s nonfiction section of Barnes and Noble on some of his favorite topics: the sun, the moon, the earth, thunderstorms, and earthquakes. While I was at the bookstore, I also found a small "computer sitter" figure of Sheldon from The Big Bang Theory, which is one of his favorite television shows, and a street map of towns in Northwest Indiana, where we live. Of course, the last thing I grabbed—the street map—was his favorite gift.

Monday—I received a letter in the mail that elevated my blood pressure from Indiana Medicaid, who provides disability services for Alex. In a previous blog entry, I explained that they had sent us a letter in January threatening to cancel Alex’s benefits because they alleged that I had “failed” to send them his financial records. After several calls to them, they discovered that they had received the information I had sent in a timely fashion, but someone had forgotten to note that in his file. Fortunately, my organization skills and tenacity prevented his benefits from being cancelled. The letter I received this week stated that they had sent us a letter in January indicating his benefits were to be cancelled, and a class action lawsuit had been filed against them because they had failed to notify people properly. Because the letter was not clearly written, I had to read it a few times before realizing that they hadn’t actually cancelled his benefits, which made sense because they have been paying for services for him the past few months. However, to be certain, I logged onto their website, looked up Alex’s files, and discovered that he was still covered. While I was relieved that his benefits were still in place, I wasn’t pleased that they had me worried and that I had to double check to make certain his status was correct.

Tuesday—We took Alex to one of his favorite places, the Target Café, for a snack of potato chips and Sprite. Ed and I have decided that outings to the Target Café provide us with a nice break, as well, since Alex happily watches people come through the store, and an added bonus for him is when small children, whom he finds especially amusing, appear. With something tasty to eat and drink and a good people-watching view, Alex thoroughly enjoys himself and smiles the entire time he’s there. We’re pleased that something so simple and inexpensive makes him happy. Besides, Ed and I are also fans of the hot pretzels they serve there, too.

Wednesday—Alex’s behavioral therapist came for her weekly session with him. Before she arrived, I did my regular inspection of our main floor to make certain that the house looked nice before she arrived. In addition, I filled out his weekly behavioral report for her, noting any issues we had observed during the past week. As usual, I wrote that his primary weakness has been speaking too softly to be heard, which shouldn’t seem like a problem. However, as she has explained to us, not everyone will be as patient as Ed and I are about having him repeat himself. Consequently, we have been working with him to make his voice audible. In addition, she and I worked together on Alex’s newest ploy, leaving in the middle of his behavioral therapy sessions to go to the bathroom. I suggested that she not even mention the topic, as he was likely to obsess on it, and I closed the bathroom door to hinder his efforts to interrupt his session. Our plan worked, as Alex only tried to leave the session once, and I told him to go back because he did not need to go to the bathroom. I think he learned that two women could outsmart him any day of the week.

Thursday—Alex’s case manager who oversees his state disability benefits came to see us to complete his annual level of care survey. The state uses this information to assess what services and funding Alex should receive. To determine his eligibility, Ed and I had to answer several questions regarding his physical mobility, his self-care skills, his self-directional abilities, and his learning skills. His case manager helped us immensely as she was able to explain the nuances of the questions and provide examples of what kinds of skills the questions intended. As usual, Ed and I were in complete agreement on our answers regarding Alex’s strengths and weaknesses. After his case manager left, Ed commented to me that this process was a good news/bad news experience. The good news is that Alex qualifies for disability funding and services; the bad news is Alex has weaknesses that qualify him for disability funding and services.

Friday—Alex was delighted to have books arrive that he had ordered from Amazon using gift cards he’d received for Christmas. He had chosen a book on winning strategies for the dice game Yahtzee, a chart explaining how to bet on the card game blackjack based upon the odds of winning, and a trivia almanac with questions for every day of the year written by one of his heroes, Jeopardy champion Ken Jennings. While he was pleased with these books, he was a little disappointed that another book he ordered had not yet arrived. Because The Handy Science Answer Book is apparently out of print, we had to order it from a specialty bookstore. Although Alex will be thrilled when that book arrives, I will be even happier since I won’t have to listen to Alex ask me if the mail has come, when I think it will arrive, and where I think the book currently is in transit. I just hope he’s as enthusiastic about that book when it finally does get here.

As I reflect back on the past week, I feel thankful that we have found wonderful people to help us with Alex. From his doctor to his behavioral therapist to his case manager, these support people have guided Ed and me with their expertise so that we can help Alex reach his full potential. Now if that Handy Science Answer Book would hurry up and arrive, I would be even more grateful.

“Tune your ears to wisdom, and concentrate on understanding. Cry out for insight, and ask for understanding. Search for them as you would for silver; seek them like hidden treasures.” Proverbs 2:2-4


K. C. Wells said...

Fingers crossed that the book arrives soon!

Pam Byrne said...

Typical Alex--the book arrived, he flipped through it briefly, and he set it aside. Sigh...the anticipation is always better than the reality, I guess! ;)