2018: Year in Review

“Five hundred twenty-five thousand six hundred minutes. How do you measure, measure a year?” from “Seasons of Love” by Jonathan Larson

Since this is the last blog entry of 2018, I thought a review of our highlights from this year would be appropriate as a good way to measure Alex’s progress. Tomorrow evening, he will eagerly await the ball drop in Times Square in New York City, and he will count down along with Ryan Seacrest as he watches the televised event. In that spirit, I will also count down from ten.

10. We began the new year with a new case manager to oversee Alex’s disability budget and coordinate his support services. Although we were sorry to see his former case manager go because she was sweet, energetic, and efficient, his new case manager is kind, conscientious, and experienced. One of her main tasks has been collecting information for the new person-centered individualized support plan required by the state of Indiana. By asking numerous questions, she was able to construct a comprehensive multi-page document that accurately reflects Alex’s strengths, interests, and needs. However, I’m betting that after all that work, the only people who will read that document are his case manager and me.

9. Because Alex has poor fine motor skills as well as impaired gross motor planning skills, he has a great deal of trouble putting on his shoes and cannot tie shoe laces. This year’s discovery of Skechers men’s shoes with elastic bungee laces, allowing Alex to simply slip on these comfortable shoes, has made my life easier. Thank you, Skechers!

8. Due to a change in company policy, Alex’s music therapist informed us recently that he would have to do music sessions in his office instead of in our home. While he had many concerns about making this change, I felt reasonably confident that Alex would adapt. Thankfully, Alex proved me right and has done quite well so far in making the transition to the new setting. Of course, the warm welcome the office staff provides Alex each week probably helps, too.

7. Last year, Alex’s behavioral therapist was promoted to supervisor, and her additional responsibilities meant cutting back from two sessions to one each week with her. The second weekly session focused on going out in the community and practicing social skills they had worked on earlier in the week. This year, she decided Alex has made such good progress that she could spend less time working on skills with him and add the community component back into his sessions. Consequently, she now spends half of the session working on skills, and for the other half, we take Alex out in the community again. Alex was pleased with this change, and the sweet ladies who work at Burger King and treat him like a king seemed delighted to see him again.

6. After reading research from Dr. Chris Exley regarding aluminum toxicity links to autism and Alzheimer’s disease, I decided to follow his suggestions about chelating aluminum. Every day, Alex now drinks bottled Fiji water, which contains the mineral silica that bonds with aluminum and removes it from the body. Hopefully, continuing to drink the Fiji water will lessen or even eliminate any aluminum lurking in Alex’s brain, where it can do damage.

5.  One of the most valuable lessons Alex’s behavioral therapist has taught him this year is being assertive but polite. Often, when posed with a choice, Alex seems indecisive and will ask, “What would be good?” She has helped him learn to weigh his options and tell what he wants or needs while using good manners. He has done much better about expressing himself, and sometimes to make sure he’s covered all of his bases, he’ll tell us what he wants immediately followed by all three of the polite indicators: “Please, thank you, and you’re welcome.”

4.  This year, we have been able to reduce more of the medications Alex takes to manage anxiety. Since he has learned ways to deal with anxiety cognitively through behavioral therapy, he relies less on medication. With the guidance of his psychiatric nurse practitioner, we have been able to reduce dosages of nearly all of the medications he takes and are hopeful we can eliminate some of them soon. His behavioral therapist has told us that medication reduction is rare in autism, so we are delighted that this is a sign he is doing remarkably well.

3.  After 2017 found us constantly battling with yeast overgrowth in Alex’s digestive system, his doctor wisely decided to continue weekly doses of the anti-fungal Diflucan for several months this year to wipe out the dreaded thrush. This aggressive treatment did the trick, as we thankfully saw no signs of thrush this year. In fact, this year, Alex has probably been the healthiest he has ever been, with no colds, infections, or any illness.

2.  While we started the year with Alex having some increased sensory issues and anxiety about going places, especially in cold weather or in noisy settings, he thankfully overcame these concerns. In fact, he enjoyed going to several concerts this summer and to many basketball games this fall with no signs of crowds or loud noises bothering him. In addition, he looks forward to going grocery shopping every week at the new local superstore that opened this summer, where he does a better job of pushing the cart and staying out of other people’s way than any other customers do.

1.  Although we have been dealing with Alex’s aversion to food for about a year and a half following an especially bad case of thrush, he seems to be on the right track to regaining his appetite. After a year of his self-limited diet, we took him to a terrific speech therapist who reassured us that nothing was physically wrong. She believed that thrush had made eating painful and food taste bad, so we had to work with Alex on overcoming those negative thoughts. Her warmth and kindness inspired him to try a variety of foods. Still, progress has been slow; however, the past week, we have seen a real breakthrough as Alex has shown signs of returning to his formerly varied and healthy appetite. As we begin a new year, we pray that he continues to make progress so that he can enjoy eating again.

Looking back over all the accomplishments Alex has made in 2018 makes us hopeful for the progress he will continue to make in 2019. Most of all, we are thankful for the blessings God has provided this year and will continue to provide so that Alex will, indeed, reach his full potential.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness, I will create rivers in the dry wasteland.” Isaiah 43:19