Sunday, June 2, 2019

Pleasant Plateau

For the past few weeks, every evening after Alex goes to bed, Ed will remark in a questioning way, “He’s been good all day?” When I nod and answer in the affirmative, Ed will say, “Knock wood, he’s doing really well,” and we will both rap our knuckles on the nearest wooden table. Knowing that I really shouldn’t buy into this superstitious ritual and should give proper credit, I add, “Praise God!”

Because Alex’s progress has not been a linear path as we have seen setbacks along the way, we fear speaking about the good could somehow make him regress. When he is dealing with anxiety that causes his behavior to decline, we pray mightily for change. However, when Alex is sweet and calm, as he has been lately, we worry that doing anything differently might cause an unwanted change.

For years, we have prayed for God to heal Alex. At times, frustrated by regressions and waiting, I have been jealous of those who have experienced complete healing from autism. Researching diligently, I have thought if I kept reading and praying, I could find a cure for Alex. While some children with autism have been healed by chelation therapy to remove heavy metals, vitamin B12 shots, special diets and nutritional supplements, and other methods, none of these gave us the miracle I desperately sought. Nonetheless, the efforts have been worthwhile because these interventions did make him better.

In addition, I have been frustrated that acne has left mild scars on Alex’s face, even though he cooperated with methods to treat the inflammation and never picked at his face. He also has a small bald spot left behind by a minor scalp infection, folliculitis, that we treated immediately under medical supervision. Thinking that Alex has suffered enough from the obstacles autism has presented, I hate that he has small scars as reminders of previous infections.

However, perhaps these minor flaws are evidence of healing, reminders that sickness is not a permanent state. Over time, the acne scars have faded their angry redness, and the bald spot has shrunken from the size of a silver dollar to that of a penny. I cut and comb his hair to cover the small bald spot so that no one really sees it, and the acne scars along his hairline are fading with nightly applications of Mederma scar cream and time. Most importantly, these slight imperfections don’t bother Alex a bit. The only mirror he uses is a toy mirror that softens and slightly distorts in its reflection, much like that described in I Corinthians 13:12: “Now we see things imperfectly, like puzzling reflections in a mirror…”

Nonetheless, we still battle infection and its lasting effects. Two years ago, Alex had a bad case of yeast infection in his mouth and throat that ruined his healthy and hearty appetite. While we have been praying that he would regain his love of nearly all foods, he still chooses to eat a rather limited diet. Even after the yeast infection has been controlled by weekly doses of anti-fungal medication and after working with a fantastic speech therapist to overcome sensory issues related to eating, Alex is still a picky eater, which is not uncommon in autism. However, sometimes he will surprise us and ask for a food not usually part of his chosen menu and devour it happily.

Since we have seen him overcome other issues with time, we wait expectantly for the day when he returns to his varied appetite. Furthermore, we are thankful that he has regained the weight he lost from his self-selective diet because he has cooperated with drinking nutritional non-dairy protein smoothies I make for him every evening to increase his daily calorie intake. Every week as I weigh him on our old-fashioned doctor’s scale, I say a prayer that I can push the bar a little farther to the right, and God has been faithful, as Alex has continued gaining weight at a healthy pace.

Along with gaining weight, Alex has also shown reduced anxiety lately. He’s not just content but happy, skipping through the house and grinning from ear to ear. He has once again enjoyed going places, and he’s chatty and interactive, making appropriate comments that intrigue and amuse us. For example, he nicely asked me the other day to adjust his wristwatch because “It’s too close to the armpit.” Mind you, it was just a little above his wrist, but the exaggerated description made me laugh. The professionals who work with him have also noted how well Alex is doing and have commented on how pleasant and observant he is, asking good questions. Last week, his companion came to stay with him while Ed and I enjoyed lunch at a restaurant. When we returned, she told us that he had been “perfect.” She also shared that when she asked him who was winning the baseball game he was watching on television, he told her––knowing that she’s not a fan of the sport––“The team that has the most points is winning.” She found his literal explanation amusing; he was trying to explain something he thought she didn’t know.

When we reach these pleasant plateaus where things are going smoothly and every night and day I thank God that Alex is doing so well and Ed and I knock on wood in hopes of keeping the trend going, we closely analyze circumstances to make sure nothing happens to change the peaceful existence we gratefully savor. However, sometimes things occur that we cannot control. A few weeks ago, we learned that one of the medications that helps keep Alex calm is no longer available. Despite the best efforts of a dedicated pharmacist, we cannot get that medication, so the nurse practitioner who prescribes Alex’s medications has given us a plan to wean him off that drug.

While my first instinct was to panic that this change would upset Alex and cause a setback, I had to remind myself that God sometimes shoves me forward with both hands because He has plans to move Alex into something new and better. Although I would have preferred to enjoy the pleasant plateau a bit longer, not being able to get this medication means that we must make a change. Remembering that Alex has always responded to medication reductions favorably, I prayed that this change would be equally smooth for him. As we have decreased his doses over the past few weeks, he doesn’t show any negative side effects. If anything, he actually seems even better with this medication reduction, and we pray that once we take him off completely, he will continue to do well and perhaps even get better. I have to believe that God was showing us that Alex no longer needed this medication because the weaning process has gone so well, and Alex continues to be calm and good natured.

Perhaps healing looks different than I had imagined. Certainly God’s ways and plans are better than mine. Maybe God reminds me that all my searching for a cure is not nearly as important as trusting Him to make Alex better. Definitely, I have witnessed His hand in our lives, guiding us and healing Alex in unexpected ways that make us know He was responsible. For us, healing and progress have rarely been the sudden and dramatic changes I prayed for and expected, but instead the culmination of small signs that reveal God has been there all along. Knock wood and praise God!

“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

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