Normal

A common expression autism parents hear is the saying, “Normal is just a setting on the dryer.” Because life with autism is often anything but normal, this quote is intended to offer comfort, indicating that the concept of “normal” is often overrated. Although we wouldn’t trade Alex for the world, we often long for the normalcy of life that autism frequently denies us. Especially in May and June, I have to fight my feelings of jealousy toward people whose children are “normal” when I see their pictures on Facebook enjoying proms, graduations, weddings, sports, and vacations. Certainly, we are grateful for the progress Alex has made, but human nature makes us wish for an easier life, not just for Ed and me, but for Alex, as well.

This week emphasized the value of normal when we took Alex to the doctor for his annual physical. Since Alex receives disability benefits from the state, we must have a doctor assess his status and health each year. On one form, the doctor must confirm Alex’s disability as a diagnosis of autism with impulse control disorder and obsessive-compulsive disorder. These conditions qualify him as having a developmental delay, something that strays from the norm. On another form, his doctor must assess his physical health by checking a box marked N for normal or AB for abnormal for each body part or system. Thankfully, the doctor was able to mark N for everything for Alex, who is generally quite healthy, except for neurological and speech, which he marked as AB, or abnormal, with an asterisk “due to autism.”

In addition to filling out the forms we needed, Alex’s doctor went over recent test results with us. Because of the various medications he is taking, he needs to have blood tests every few months to monitor any possible side effects. Not only are we thankful that Alex always complies nicely with having his blood drawn for the tests, but we are also pleased that his test results always come back in the normal ranges, indicating that he is healthy and that the medications do not seem to affect him adversely. His most recent tests revealed that all of the results were once again in the normal range, which pleased us. In addition to the blood tests, we had also done a 24-hour urine collection to test whether Alex had any heavy metals in his system. When he was eleven years old, we discovered through urine testing that Alex had high levels of the toxins arsenic, mercury, lead, and aluminum. This led us to two years of chelation therapy with the medication DMSA, a sulfur-based compound that rids the body of toxins. Since we had not tested him in several years, we thought that checking his levels would be wise to see if any toxins had built up after completing chelation. Once again, we were relieved to discover that all of his levels on this test were normal, as well. The only thing that marred this good news that everything was normal was Alex’s abnormal frustration with having to wait in the doctor’s office, which is part of our life with autism.

Aside from the medical tests that indicate Alex is doing well in spite of autism, we have recently seen improvements in his thinking and language that suggest his brain is working better. Because his medications that help him deal with anxiety and aggression keep him sedated, Alex has not been as sharp mentally as he used to be. However, we have noticed that he seems to be regaining his perceptive skills lately, making comments on things he notices and asking interesting questions again. In the past, Alex liked to make proclamations that something was rare, and he has started doing this again, saying things when we’re driving, such as, “It’s rare for the speed limit to be 25 [miles per hour]; it’s usually 30 or 35 or 20 in a school zone.” Another day this week as he was looking out the window watching cars go down our street, he commented, “Purple cars are very rare.” In addition, he has been asking unusual questions, including, “Can we get some food from a gas station?” Food has been a big topic with him this summer, as anytime we go someplace, he will ask, “Will there be food?” He also makes very specific requests for food he’d like to eat, including asking me recently to make shish kebab for dinner. While these comments may not seem remarkable, to us they represent a return of the alert and observant Alex who was overwhelmed by anxiety and then sedated by medication for many months. During those difficult times, we missed his observations and comments that revealed his unique perspective on life. Once again, we begin to see how his mind works, and we welcome the return of the bright, funny, and clever person Alex truly is. For us, that is the normal we know, and while we aspire to the more traditional concept of a normal life, we feel blessed to regain what we thought we had lost and appreciate the comfort of the familiar as we hope for even better.

“Then you will have healing for your body and strength for your bones.” Proverbs 3:8