Sunday, October 11, 2015


A few weeks ago, Alex’s case manager told us that the State of Indiana was conducting surveys regarding the satisfaction of people who receive disability services. She explained that the survey was meant to be used in a variety of living situations—from group homes to supported living in apartments to living in the family home—which meant that some of the questions may not quite fit Alex’s situation. As his case manager, she informally interviewed him in person, and I was able to sit in on this session. We never know exactly what Alex is thinking because he doesn’t say a lot, but when he does offer his opinion, it’s usually interesting to hear his comments.

The first part of the survey dealt with his room and his privacy. For example, he was asked if he shared his room with anyone (which he doesn’t) and if his door were closed, whether people would knock before entering. Apparently, Alex recognizes that we respect his privacy by always knocking before entering his room because he answered that question with a strong affirmative. He was also asked about how much say he had in decorating his room, such as paint color, furniture arrangement, and bedding choices. He must think that he has more input than he actually does because he told her that he was able to make all of those choices for himself. While he has chosen the bedding (currently Chicago Cubs baseball sheets and comforter) and had input on the themes (baseball and NASCAR), I picked the paint color (basic antique white) and the arrangement of the furniture. Since his dad gets little say in those decisions, either, I have no problems with being assertive when it comes to home décor.

Another part of the survey addressed his access to technology and whether he needed permission to use the telephone, television, stereo, and computer. Because Alex shows good judgment in his use of devices for entertainment, we allow him to use them on his own. This is a far cry from the days when we hid the remote controls because he found it more entertaining to hurl them across the room than to use them for their intended purpose. One exception to this free access to technology is the phone, which we do not allow him to use on his own. After a few times of dialing 911 to see what would happen, Alex was banned from the phones so that he would not place false alarm calls. Even though he has not done this for many years, we still have memories of police showing up on our doorstep from his 911 experiment, and we keep the phones hidden or locked away to prevent him from trying  “the boy who cried wolf” scenario again.

A third aspect of the survey related to how many opportunities he has to go out in the community. Because Alex’s behavior has improved significantly, especially out in public, he gets to go someplace nearly every day. He was able to say that he goes to various sporting events, concerts, restaurants, parks, and stores. In fact, he was pretty enthusiastic talking about restaurants he’s frequented because he really likes dining out, which combines his love of food with his love of going places. Some more specific questions asked about the places where he shops and what kinds of things he buys for himself. The prior week, he had been several places to buy himself items, so he was able to explain with a little prompting from me that he’d bought books at Barnes and Noble, various foods at the grocery store, shirts at Kohl’s, and shaving cream at K-Mart.

Additionally, the survey asked about people with whom he interacts regularly, specifically those whom he’d seen in the past month. In addition to naming Ed and me, he included my parents, my siblings and their families (and named all of them individually), and his therapists. When he named these people who are important to him, he grinned broadly, as though thinking of them made him especially happy.

As he answered the various questions, Alex clearly showed an enthusiasm about his life. Even though autism makes his life more difficult than it should be and prevents him from participating in many activities young people his age enjoy, he is satisfied and doesn’t complain about what he’s missing. (Truthfully, he’ll occasionally whine to me that he can’t drive, but that’s really the only complaint he ever lodges.) Like the Apostle Paul, who states in Philippians 4:11, “…for I have learned to be content whatever the circumstances,” Alex has learned to be content despite the limitations autism places on his life. Instead of focusing on what he does not have or cannot do, he appreciates what he has and what he can do, and his positive outlook inspires me. Moreover, as his mom, all I want is for him to be happy, and knowing that Alex is content fills me with joy and gratitude.

“So I decided there is nothing better than to enjoy food and drink and to find satisfaction in work. Then I realized that these pleasures are from the hand of God.” Ecclesiastes 2:24

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