Sunday, October 28, 2012

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

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