Eleven Random Things

1.  One of Alex’s new quirks is to blurt out types of foods suddenly and randomly. He’ll be sitting quietly, seemingly in deep thought, and suddenly say, “Mango,” or “Polish sausage,” or “Cupcakes.” Apparently, he spends a great deal of time thinking about food. If we ask him if he’s hungry, he’ll usually tell us that he’s not, he’s just thinking about food. Finding this random chain of thought interesting, I thought I’d similarly share some random things that have occurred to me this week, most of which have nothing to do with food—I’ll leave that to Alex.

2.  The one random thing that does have to do with food is Alex’s new love of “porridge.” I had mentioned in a recent blog entry that Alex has rediscovered the story Goldilocks and the Three Bears, which he likes me to read to him again. I think he’s amused that I can do three different voices for the bears—Daddy Bear’s deep voice, Mommy Bear’s medium voice, and Baby Bear’s squeaky voice. Apparently wanting to emulate the bears and Goldilocks, he decided that he would like to eat porridge, which took some research on my part to find what porridge is and whether he could eat it on his gluten-free, milk-free diet. The closest approximation I could find for porridge is a gluten-free oatmeal made with water instead of milk. While I wouldn’t touch the mushy stuff with a ten-foot pole, Alex seems to think he has a real treat in porridge, one of his new favorite foods.

3.  The past few weeks, Alex has taken up sleepwalking, which is a bit disconcerting because awakening to a six-foot-tall, half-asleep young man prowling in the hallway in the middle of the night is frankly creepy. Since we don’t want him tumbling down our rather steep stairs to the main floor, Ed and I have been sleeping lighter, listening for Alex to open his bedroom door and start his nightly jaunts. Fortunately, he’s docile and cooperative about being led back to bed, and all three of us are able to go back to sleep quickly afterward. We’ll just be glad when he gets past this phase.

4.  Another recent phase is Alex’s renewed interest in the Disney movie Shrek. When he was younger, Shrek was his favorite movie; in fact, I think Shrek is one of the few movies, other than the Disney cartoons that he watched when he was little, that he has watched in entirety and repeatedly. Perhaps feeling nostalgic, Alex has watched the Shrek movie trailers on You Tube many times the past few weeks. Every time, he finds them really funny, as if he’d never seen them or heard the jokes before. I think it’s sweet that just watching the short clips brings a smile to his face; how nice that something so simple makes him so happy.

5.  Harkening back to his younger days, Alex has also been asking about his childhood doctor. Although she retired a few years ago, Alex often mentions her because he felt a close bond with her during the nearly ten years she took care of him. Last month, I heard the sad news that she had passed away from cancer, which was hard for me because she had been instrumental in helping Alex deal with his various medical conditions and supporting us as his parents. She genuinely cared about her patients on a personal level and did everything she could to restore their health. I wasn’t sure how Alex would take the news of her passing, but when he asked me about her, I explained that she had gotten sick, died, and gone to heaven. Alex seemed to mull this over, satisfied that she was in a better place. However, he did ask if he could call her in heaven, and like Alex, I wish we could call her to let her know we’re thinking of her, and to be truthful, to get her medical advice occasionally.

6.  Speaking of phone calls, in my blog entry a few weeks ago “Woman’s Day Magazine,” I discussed how talking on the phone with the writer of the article, Marjorie Ingall, was amazingly easy, even though we’d never met. This week I read Marjorie’s blog entry “pam and alex” [To read her blog, click here.], in which she shares that she felt a similar comfort level in chatting with me. As she points, out, even though we differ in some key areas, we found these differences didn’t matter. We liked each other and enjoyed talking to one another. I had to laugh at her description of my blog as having “a whole lotta Jesus going on” and had to agree that I, like she, “felt comfortable instantaneously, two seconds into our first conversation.” And, Marjorie, if you’re reading this, you rock, too.

7.  One of the surprise benefits of having our family featured in the November issue of Woman’s Day magazine in the article “Caring for Alex” was that a close friend of mine from junior high who now lives in California saw the article and contacted me. Even though we haven’t been in touch for more than thirty years, we found common ground in our shared past and in our present day as mothers trying to do what’s best for our children. Guided by our faith and shaped by the difficulties our children face, we can now support each other through prayer and renewed friendship.  We’re both certain that God brought us together again; no randomness was involved here.

8.  This week, we were uncertain as to how Alex would react to Halloween and trick- or-treaters coming to our door. When he was little, Alex loved Halloween, dressing up in costumes I made for him, decorating pumpkins, and going trick-or-treating. As he got older, he enjoyed watching kids come to our house for treats. Since Ed had to teach on Halloween night, Alex and I were left to give out the goodies. Right before the designated trick-or-treat time, Alex suddenly had an anxiety attack and started saying repeatedly that he wanted “to be one, two, or three again.” I suppose he wished he were little enough to dress up and go trick-or-treating himself. Fortunately, he was able to pull himself together fairly quickly and then seemed to enjoy watching kids come to our door. It’s hard to be a little kid trapped in a young man’s body.

9.  On the other hand, Alex, who will turn twenty-one next month, participated in a rite of passage that delighted him as he voted for the President for the first time. With his interest in politics and Presidents, Alex has taken voting seriously and has participated in every Election Day since he turned eighteen and became of legal voting age. However, he had to wait until this year to have his chance to vote for the President. Watching his delight and pride in voting was truly a special event that made Ed and me proud as parents. With Election Day on Tuesday, we’ll see if his candidate wins, which will make his first Presidential election even more special.

10.  This week, we also encountered another calendar milestone that Alex usually anticipates happily—the change from Daylight Savings Time to Standard Time. With the changing of the clocks back one hour, we’re never certain how this will impact Alex’s sleep patterns. I always debate as to whether we should try to keep him awake longer or not. Fortunately, he made the decision for me, as he wound up staying up later because while he was waiting for Ed to come home from the Valparaiso University basketball game, he developed hiccups that kept him awake. He seemed not to be bothered by the hiccups, which was good, and Ed and I were surprised when he clearly asked a question (especially since lately he has limited his speech to only a few words often said quietly), “What was the score of the basketball game?” Maybe hiccups jolted his brain so that he could verbalize his thoughts better, or maybe he’s more alert when he stays up a little later. Whatever the reason, hearing him ask a good question was pleasant for us.

11.  And finally, this week, we found out that enrollment in the day program where we’re hoping to place Alex seems to be on hold even longer. Originally, we were told that they wanted a behavioral assessment and behavior plan in place prior to enrolling him. Now that the assessment and plan are nearly complete, we have been told that the day program currently has no openings.  While we still believe that this program will be good for Alex, Ed and I are convinced that the delay has a purpose to give Alex time to get better so that he’ll be successful once he gets there. I recently saw a quote that has helped me deal with my tendency to become impatient when I have to wait for things: “Faith is not just trusting God, but also trusting His timing.” I’m sure God has a plan, and we just wait for the right time.

 “And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.”  Romans 8:28

Woman's Day Magazine

As my friends and family know, I have found great inspiration, spiritual strength, and deepened faith from Pastor Joel Osteen’s weekly-televised sermons as well as his best-selling books. At the end of every sermon, he offers a prayer in which he says, “Keep God first place in your life. He’s going to take you places you’ve never dreamed of.” While I’m not certain that I always keep God first place because Alex seems to demand that position in my life most days, I try to honor God in all that I do. I’ve always wondered what those places I’ve “never dreamed of” might be until this week when a feature article about my family entitled “Caring for Alex” appeared in the November 2012 issue of Woman’s Day magazine. Although I’ve known for a few months that this article was being published, seeing the story of my family and our pictures in print is still amazing to me—one of those places I “never dreamed of.”

In July, I was reading through comments people had made on my blog site and noticed one from Marjorie Ingall, who told me that she was writing an article for Woman’s Day about raising an adult child with autism and asked me if I’d be willing for her to interview me. Knowing that I tend to be a bit gullible [Ed is now laughing as he’s reading this because he thinks I’m very gullible. He’s actually right, but I prefer to think of myself as trusting instead of gullible.], I reined in my initial excitement and Googled Marjorie to make sure she was a legitimate writer. [Now Marjorie is laughing if she’s reading this because I never told her I’d investigated her background.] Once I discovered Marjorie’s impressive credentials as a published writer, I e-mailed her and told her I would be happy to talk with her about our experiences.

In our various conversations by phone and e-mail that felt more like old friends chatting than a writer interviewing a subject for research, Marjorie put me at ease in talking candidly about raising a child with autism. Since she had already read all of my blog posts on One Autism Mom’s Notes, she had a good sense of Alex and our family dynamics and how autism affects our lives. Her warm and sympathetic nature made me trust that she would describe us accurately as parents just trying to do what’s best for our special needs child. Keeping the mood relaxed, Marjorie and I spent a good deal of our phone conversations laughing because we share similar senses of humor, and Alex—my favorite topic of discussion—is a funny guy, as he’s proudly told us himself.

While Marjorie was putting together the written part of the article, Woman’s Day Photo Editor Roni Martin contacted me requesting photographs of Alex and our family to accompany the article. As I went through various digital pictures we had of Alex, I realized that we had very few recent photos in which he was not wearing sunglasses. Because his eyes are sensitive to light, he rarely goes outside without his sunglasses, and most of the pictures we had of him were taken outdoors. Nonetheless, I found some pictures and sent them to her. Then, she suggested that they send a photo crew to take new pictures of our family, explaining that the process would take about four to six hours. Knowing that Alex would not be patient for that long, I proposed instead that we take the pictures ourselves and see if they would be acceptable. Understanding of our situation, she agreed to our request and sent suggestions for what we should wear and how the photos could be staged. Since the article would be published in the fall, she recommended that we not wear summer clothes, even though we were taking the pictures in 90-degree weather. She also suggested that our clothes be solid-colored with no patterns, which made me realize that Alex did not own a single shirt without some sort of striped pattern, so we bought him a couple of solid-colored polo shirts at Target for our photo shoot.  In addition, she advised that a park setting works well for the background, and we headed off to our local park, Ogden Gardens, a beautiful place filled with trees and flowers. Fortunately, Alex was fairly cooperative as we took pictures, and we were pleased to have some good photos as a result.

After we sent the new pictures to the magazine, Roni contacted me again to let me know they wanted some pictures of Alex when he was little to help tell his story. Again, I went through our photographs and selected some of my favorites: a family portrait taken shortly before Alex was diagnosed with autism, a picture of Alex and me on the first day of school as he was headed off to special education preschool and I was off to teach my seventh grade students, and probably my favorite photo of Alex taken when he was two-and-a-half years old and happily reading [with his hyperlexic precocious reading skills] the business section of the Sunday New York Times.  Working with Roni was a pleasure because she was so helpful and accommodating.

A few days later, Woman’s Day articles editor Stephanie Dolgoff contacted me to ask some information about the old pictures and a few more questions about Alex. As she explained to me, this article was “especially close to [her] heart” because she has an older brother with autism who is now in his forties, and her parents had gone through experiences similar to those Ed and I had. Moreover, she expressed her desire that this article would “raise awareness about adults with special needs and their caregivers.” I appreciated her empathy, devotion to telling our story accurately, and her kindness.

Before the article could go to press, Maddi Scheier from Woman’s Day needed to fact check the article by reading aloud passages to me over the phone and making sure everything was true. Just as everyone else had been in this project, Maddi was friendly and pleasant, putting me at ease with her friendliness as well as New York accent that reminded me exactly of Ed’s sister. Now that all the pieces of the article had apparently been assembled, we waited until this week for the November issue to arrive at newsstands.

I suspect that my dad has been checking stores for the appearance of the November issue ever since October arrived, and apparently he talked with a CVS Pharmacy clerk who told him that grocery stores typically receive the new issues about a week before other stores. Somehow, he knew that grocery stores in our area were supposed to have the new issue on sale around noon this past Wednesday, and he immediately headed out in search of a copy for my mom and him and one for Ed and me. Successful in his quest, he immediately brought me my copy shortly after noon on Wednesday, and I was very pleased with the article. A surprise bonus was that the Woman’s Day Editor-in-Chief Susan Spencer previewed the article in her editor’s column with a very warm and thoughtful note about us. Needless to say, I have been very impressed with and appreciative of the Woman’s Day staff who worked on this article and showed great understanding and compassion, which has been a blessing.

As happy as we were with the article, we were overwhelmed by the response of our family and friends, who have shared their enthusiasm for our story being told in Woman’s Day. From my brother and Ed’s sister who couldn’t wait to read the article, so they read it in the parking lots of the stores where they purchased their copies, to the kind e-mails and hugs from friends and family, to my very sweet first hour seventh grade honors English class who applauded when my principal told the school on the morning announcements about the publication of the article, this has been a week where I have been reminded how blessed we are to have such supportive and loving people surrounding us. Although I wish our lives had never been touched by autism, I am thankful for the people whose love has blessed us and for those we have met on the journey. Just as I pray that my blog will help others dealing with autism, I also hope that the Woman’s Day article will help families like ours. And as I always promise in my prayers, “Lord, I will give You the glory!”

“Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesians 3:20