Request List

 

Because Alex has made significant progress in the past several months, Ed and I asked him two months ago to make a list of the things he’d like to do over the summer, confident that he would be able to behave himself well enough to do these requested activities. Knowing Alex as well as we do, we were also certain that his list would be reasonable and, therefore, manageable. Basically, he made the following list:

1. Go to different restaurants.

2. Go to the county fair.

3. Go to concerts in the park.

4. Go to the farmers’ market.

5. Go to Zao Island (a local family arcade and miniature golf course).

6. Go to Dairy Queen.

7. Go to the movies.

8. Play in the sprinkler.

With two weeks left before Ed and I return to our teaching jobs, marking the end of our summer, we have been able to fulfill all of the requests on Alex’s list. This summer, he has enjoyed dining at Round the Clock family restaurant (in Valparaiso and Chesterton), Culver’s hamburger place with gluten-free buns, Panera Bread for salads (inside and out on their patio), Fazoli’s Italian restaurant, Schoop’s fifties-style diner (breakfast and dinner), Suzy’s Café, The Port fifties-style drive-in, Tao Chen’s Chinese restaurant, Bob Evans family restaurant, and Kelsey’s Steak House. Despite the limitations of his gluten-free and dairy-free diet, we have found items on the menu that he can eat, and he happily devours whatever is put in front of him. Most importantly, he demonstrates that he has learned the manners we have been teaching him, thanking the people who wait on him and being pleasant and patient.

On Monday evening, a perfect summer night with comfortable temperatures, we took him to our county fair, something he looks forward to visiting every year. Along with visiting the horse and cattle barns, we looked at the 4-H exhibits, enjoyed an excellent concert by country musician John Berry, and walked around the carnival midway. Whenever we go places, Alex wants to know what there will be to eat and drink, but most food fare at the fair doesn’t fit within his dietary limitations. However, he did enjoy a root beer float minus the float and strawberry lemonade. Also, he wanted to continue his annual fair tradition by playing the duck pond game, where he chose a red sock monkey stuffed animal, whom he named Alan (after his favorite country singer Alan Jackson) for his prize. Although he told us he had “tired feet,” by the end of the evening, he rated his visit to the fair “one hundred percent.”

On Thursday evening, we took him to a concert in our downtown park, the last one of the summer series, where we had already seen the local community band, a country band, and a rhythm and blues group. The last concert was a pop group who were not Ed’s taste in music, but Alex and I found them entertaining. Of course, Alex also liked having something to eat and drink as he bobbed his head to the music.

This summer, we also took him to the Saturday farmers’ market here in town and the European Market in nearby Chesterton. Even though these were on his request list, Alex seemed more interested in walking as fast as he could past the displays instead of actually shopping. In fact, he reminded me of Chevy Chase’s character Clark Griswold in the movie Vacation at the Grand Canyon, nodding his head and moving along, just to be done. Consequently, we bought nothing, but we could at least check off another item on Alex’s list.

Also, we took him to Zao Island, but the miniature golf course was extremely crowded. Even though Alex is much more patient than he used to be, we felt that the wait would be too much for all of us. Perhaps we will try again before summer is over; I always enjoy Ed telling Alex repeatedly to look at the golf ball because Alex is looking everywhere but at the ball. Nonetheless, Alex enjoyed playing the Wheel of Fortune video game and the NASCAR simulation racing game, where he drives Dale Earnhart Junior’s car but drives recklessly, running into walls and other cars, making us glad that he does not have a driver’s license. Even though his favorite video game, Deal or No Deal, was broken, he still smiled the entire time. I think we definitely need to return to Zao Island for a round of miniature golf and a try at Deal or No Deal before summer ends.

For years we used evening trips to Dairy Queen as a reward for good behavior in the summertime. Even though Alex’s diet limits his options on the Dairy Queen menu, he likes their Arctic Rush slushes and typically keeps a mental list in which he rotates the flavors he likes: cherry, lemon-lime, and strawberry-kiwi. Although blue raspberry is another option, he never chooses it because he doesn’t like the “blue lips and blue tongue” that is inevitable after drinking one. This summer, Alex has strayed from his usual slushes, choosing instead to have their gluten-free french fries with root beer to drink. Even though we no longer have to bribe him with trips to Dairy Queen, he still enjoys frequent visits there for a snack or dessert.

Because going to the movies can be overwhelming with the big screen, loud volume, and crowds, we have avoided taking Alex to the movie theater for fear he would have sensory overload. In fact, the last time we took him to the movies was before we knew had had autism; we went to see Toy Story when he was three years old. Although he was fine then, we never took him to movies again for fear that he might get upset. Moreover, he never really seemed very interested in anything that had a plot. Recently, though, he has shown greater patience and enjoyment in following the plot of television shows and movies on t.v., so we thought we’d give this another try. When he asked to go to the movies, specifically to see the new Pixar movie Inside Out, which he’d seen advertised on television, we thought this was the perfect time to take him. Once again, he showed how much progress he’s made, sitting calmly and enjoying the movie, never complaining about how long he had to wait or asking when he could go home.

His patience also paid off as he waited for the final item on his list request list to be fulfilled. After rainy and unseasonably cool weather this summer delayed his sprinkler runs, he finally was able to enjoy sprinkler time during some hot days in the past two weeks. Even though most young men his age would not think hanging out in the backyard sprinkler was something cool to do, Alex sees this as a fun summertime activity that he’s anticipated every year. As we watch him enjoy that simple pleasure, we are reminded that even though he’s come so far, he’s still basically a little boy at heart.

As summer comes to an end, I think all three of us can easily say that this has been our best summer ever. Alex has been able to do all the things he wanted to do, and Ed and I have been thankful and happy to watch his delight as he engaged in these common activities that brought him such joy. God has truly blessed us, and we are grateful.

“Listen to my voice in the morning, Lord. Each morning I bring my requests to You and wait expectantly.” Psalm 5:3

What I'm Doing on My Summer Vacation

Yesterday I went for my annual mammogram. As any woman knows who has been through this ritual, this test involves the emotional aspect of putting aside modesty to allow our breasts to be x-rayed along with the physical aspect of having them and our collarbones smashed in machinery to get the best image. Nonetheless, we go through this test to make certain we are healthy or, God forbid, to catch cancer in early stages. As an autism mom, I have to be healthy because my child, probably even more than others, needs me to be healthy to take care of him, even at age 21. I had to remember this yesterday as I endured rather insulting comments regarding my profession as an English teacher from the technician who was doing my mammogram, essentially telling me that teachers are bossy, kids don’t like English, and grammar is boring. Wisely, I knew not to waste time trying to convince her otherwise; raising a child with autism has made me less sensitive to criticism and smart enough not to waste time on those who do not understand. The comment that hit me hardest, however, was when she remarked how nice it must be to have my summer off. She went on to say that when children are smaller, the teacher mom can spend the summer having fun with them, and when the children are older, the teacher mom can relax and do projects around the house. I didn’t bother to mention that my son has autism, nor did I try to explain life with autism to her; she wouldn’t have understood anyway.

This week, like many weeks, found me making an assortment of phone calls for Alex, trying to get appointments arranged and checking on various things he needs. For example, on Monday I had to call the pharmacist about one of his medications that seems to be on a different refill schedule than his other medications. Thankfully, she is very helpful and pleasant, and she went back through the records to find the original prescription, confirming that I would need to call his psychiatric nurse practitioner’s office to have her authorize a refill. When I called her office, I also set up an appointment for next month for his six-months check-up. After doing that, I remembered that we already had an appointment scheduled that afternoon with the case manager who oversees his state disability funding and his behavior therapist to work on his annual report for the state to continue services. I called the office again, rescheduled his appointment for the morning instead of the afternoon, thinking that would create a busy, yet workable day.

On Tuesday, his behavioral therapist came for her weekly session, and as usual, I flew around the house making sure it looked presentable for her visit. In addition, I wrote his weekly report for her, updating her on behavioral issues to keep her apprised of his progress and any issues she needs to address with him.  On Wednesday, we took him to the dentist, which is something Alex actually enjoys “one hundred percent,” largely because his dental hygienist is wonderfully sweet and patient with him. Also, we have been blessed that Alex has never had any cavities or any other dental issues, so his visits to the dentist have just involved having his teeth cleaned and checked. Because of his anxiety issues, we hadn’t taken him to the dentist for over a year. Unfortunately, they discovered that he has some cavities in his back teeth that will need to be fixed, and the dentist wants to do this under general anesthesia in the hospital because of Alex’s anxiety and sensory issues. Although we would rather Alex didn’t need to have any work done, we agree with the dentist that this is the best way to handle the situation to avoid upsetting him.

On Wednesday, I received an e-mail from the intake coordinator from the agency where we are on a waiting list trying to get Alex into a day program. She was notifying us that she would be taking a different position within the agency and would be turning over Alex’s file to another intake coordinator. Later that day, she called me to discuss respite care services the agency could provide for us. After not having heard from her in months, I was surprised that she contacted us to offer assistance. Nonetheless, I appreciated that she explained the various services we are eligible to receive, and I was able to remind her that we were most interested in getting Alex involved in the day program, which apparently is still on hold at the moment. Fortunately, we’ve become good about waiting for this after over a year of being on the waiting list.

On Thursday, Alex’s dentist’s office called me to let me know they had set a date for his dental appointment at the hospital next month. In addition, he must see a doctor affiliated with the hospital where the dental work will occur the week prior to that appointment to make sure he is healthy enough for the anesthesia. I appreciated that she had scheduled this for us, as well, but it was the same time as the appointment I had rescheduled with his psychiatric nurse practitioner, which meant calling her office to change his appointment again to the following week. Fortunately, we are able to take care of all these various appointments before Ed and I have to go back to our teaching jobs.

On Friday, Alex decided that he needed to go to the eye doctor, probably because Ed and I have both been to the eye doctor for our annual appointments this month. Even though all evidence shows that Alex has perfect eyesight, he insists that he should have his eyes checked. After he pestered me repeatedly about making an appointment, I called the optometrist, and Alex is delighted that he will see him tomorrow morning. Ed and I are praying that Alex will be cooperative for the eye tests and that his eyes are as healthy as we think they are.

Yesterday, after my mammogram, I spent time researching a new antifungal drug Alex’s doctor has prescribed in yet another attempt to get rid of the thrush infection of his mouth that we have been dealing with for over a year. With all the medications Alex takes to keep him calm, adding anything new to the mix makes me a little nervous and sends me to websites checking for possible drug interactions. Convinced that the new antifungal should be safe, we will start that medication today and pray this will be the magic bullet that finally eradicates the stubborn candida fungus in his mouth.

Aside from my role as Alex’s personal assistant in setting up and coordinating appointments with various professionals who help him, I’m also his social director who comes up with daily outings to keep him entertained and makes sure he has a fun summer. This week, we went to two outdoor band concerts in the park, visited Bass Pro Shop for the first time, had dinner at Taco Bell twice so he could enjoy his favorite Cantina Bowl with rice and beans, took him to an arcade to play video games of Wheel of Fortune and Deal or No Deal, walked with him on the trails of a nearby nature preserve, got him apple chips and a soft drink at the Target Café, and took him to the Indiana Dunes State Park beach where he waded in Lake Michigan. Certainly, we had a busy week, but an enjoyable one, too, even thought it was not the relaxing/home project one suggested by the x-ray technician who did my mammogram. However, this week reminded me that I must be at my best so that I can take care of Alex’s needs, and I’m thankful for my health, even if that means enduring those annoying mammograms.  While I wish my house were more organized and that I had more time to read for enjoyment instead of research, I am grateful to have my summer “off” so that I can devote more time to Alex, making sure that he, too, is healthy and can enjoy life to the fullest.

“Work willingly at whatever you do, as though you were working for the Lord rather than for people. Remember that the Lord will give you an inheritance as your reward, and that the Master you are serving is Christ.” Colossians 3:23-24

Acts of Kindness

 

In March, I wrote a blog entry entitled “Should Autism Be Neither Seen Nor Heard?” describing incidents reported in the media where children with autism and their parents had been treated badly in public places because of the children’s behavior. Fortunately, we have not had to face scorn in public, partly because Alex likes going places and generally behaves well when he is out and mainly because Ed and I make certain that his behavior never disturbs others. Keeping Alex close at hand, watching for cues that he’s becoming overwhelmed, knowing where all exits are located, and moving rapidly to remove him from others’ view should he become agitated, we never want him to bother other people. Nonetheless, we would hope that other people would be patient, tolerant, and understanding should he have a sudden meltdown, knowing that he really can’t help his behavior when anxiety overtakes him. Moreover, we would do everything in our power to calm him and remove him from the situation so that he wouldn’t be disruptive to other people.

To avoid ever having a public incident, parents whose children have autism would have to stay home all the time, which would not be conducive for their learning social skills and proper behavior in public. While taking these children places may involve some risk, we won’t know if our kids can handle situations until we test them. What has been a pleasant surprise for Ed and me is that not only have we found people who are tolerant of Alex’s differences but are also genuinely kind and willing to be especially thoughtful in their dealings with him.

Last week, we took Alex to the doctor because he has another outbreak of thrush, or yeast overgrowth in his mouth. We have only been seeing this doctor a few months, but we have been especially impressed with how kind he and his staff are to Alex and us. Knowing that Alex is fascinated with numbers and vital statistics, the nurse always tells Alex his weight, temperature, blood pressure, and pulse and tells him what they were the last time he was there. In addition, she makes certain to show him the monitor screen for the electronic blood pressure cuff so that he can watch the numbers change as it registers. While that gesture may seem small, it means a great deal to Alex, and even more to us as parents who appreciate someone making Alex happy. Similarly, the doctor has such a wonderful bedside manner with Alex, explaining everything to him as he exams him and speaking to him in a gentle yet never condescending manner. Not surprisingly, Alex actually looks forward to going to the doctor because they have made appointments such a pleasant experience for him.

Yesterday we took Alex to a Celebration of Wildlife at a nearby county park. Every weekend we try to find outings for him as a way for him to get out of the house, be around other people, and learn new things. The main attraction at this event was a large tent with several animal displays from veterinarians, animal rescue groups, and a zoo. The highlight for Alex was seeing turtles and tortoises, which are among his favorite animals. At one exhibit, he was intently observing a turtle when a young woman asked him if he would like to touch the turtle. His eyes lit up, and he shyly told her yes. She picked up the turtle, assured him it was very nice, and encouraged him to touch its shell. He was pleased to have this opportunity, and we were impressed by how sweetly this young woman spoke to Alex and allowed him to have a special hands-on experience. After that, she offered to let him pet a lizard from the display, also assuring him that the animal was nice, nothing to be feared. As she gently encouraged Alex, he also touched the tail of the lizard, which he found interesting. While Alex was impressed with the animals, I was impressed with how naturally she interacted with him and appreciated how kind she was to make his experience at the exhibit more special. A few minutes later at another exhibit, an older gentleman observed Alex happily watching small alligators swimming in a wading pool at his display and offered to let Alex touch one of them if he would like. When Alex indicated that he wanted to touch the alligator (which had its mouth duct taped shut so that it couldn’t bite), the man kindly reached into the pond to get the alligator and hold it for Alex to see and touch. Noticing that Ed had a camera, the man also offered to let Alex take a picture with the alligator, which was a thoughtful gesture. Like the young woman, he was friendly and encouraging with Alex, but he did so in a way that was genuinely kind, a seemingly effortless gesture to make Alex happy.

Whenever people are kind to Alex, they endear themselves to Ed and me and reaffirm a faith that the majority of people are good. While not everyone may realize that he has autism, I’m sure that most people realize that Alex is different from observing him a few minutes. When people are willing to look past his differences and reach out to him with genuine kindness, I hope they feel the joy they bring him and the gratitude Ed and I feel for their efforts. Of course, Ed and I make certain that they know how much we appreciate their kindness by having Alex thank them for their gestures and always expressing our gratitude to them, as well. While their actions bless us, I hope that their interactions with Alex bless them, too, so that they might bless other children like him. I’m reminded of a line from Israel Horowitz’s play I teach my seventh grade students that is an adaptation of Charles Dickens’ A Christmas Carol: “An act of kindness is like the first green grape of summer: one leads to another and another and another.” Moreover, I hope that Alex not only appreciates the kindness of others but truly learns from their examples so that he can show others kindness, too.

“We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love.” II Corinthians 6:6

Summer Plans

Like most young people, Alex is eagerly anticipating summer and planning various activities he wants to do the next three months. Because we have home schooled him for his entire school career, he isn’t really waiting for school to be done; he’s waiting for the end of his parents’ school year when we’ll be done with teaching and freer to take him places. This week, Ed finished his semester of teaching college English, giving final exams and grading final papers, so his summer has already started. However, I still have three more weeks of teaching seventh grade English before I’ll start my summer break. In the meantime, we have been taking Alex to various weekend activities to keep him occupied until summer actually begins.

Every week, I have been checking various local websites listing special events in the community, searching for events that Alex would find interesting. Also, I’m always looking for activities that are free or inexpensive, knowing that Alex could suddenly decide after a few minutes that he wants to leave. Fortunately, we have been able to find a variety of economical weekend events that he has enjoyed. For example, last month we took him to an Earth Day celebration at our county fairgrounds exposition center that featured music and animal exhibits, including one of his favorite animals, turtles. However, the first thing he asked when we got out of the car was, “Will there be food?” Naturally, he was pleased to discover that, indeed, there was food there. A few weeks ago, we took him back to the exposition center for a pet exhibit, where he was able to see lots of cats and dogs. I think his favorite thing about the event, however, was seeing a dog mascot, as pictured below.

Yesterday, we took him to a spring festival at a nearby county park that formerly was a farm. While he was glad to discover that food was being served at this event, too, he seemed to enjoy most watching kids engaged in various activities there. In addition, he was able to watch people flying kites and dogs catching Frisbees, listen to live music, and feed goats, as pictured below. 

Later in the afternoon, I discovered that our favorite local grocery store was having a gluten-free foods sampling event, which I knew he would really like. With several vendors represented, a variety of foods were available for Alex to try that were within his strict gluten-free and casein-free diet. He sampled cinnamon raisin bread, orzo with vegetables, pasta with marinara sauce, turkey lunch meat, and pretzels. In addition, he took home samples of sugar cookies, gingersnaps, and vegetable chips. Needless to say, he thoroughly enjoyed himself since food is a major draw for Alex when it comes to outings.

Even though Alex has enjoyed our weekend outings, he is busily planning things he’d like to do once summer officially begins. So far he has come up with the following list of places he’d like to go this summer: casinos, Cracker Barrel Restaurant, Zao Island (a local arcade/miniature golf course), a hotel, a baseball game, the park, and the county fair. Every day, he also asks us if it’s warm enough to play in the sprinkler, something he likes to do in hot weather. Perhaps the most puzzling suggestion he’s offered is that he wants to go camping. Since we’ve never taken him camping, I’m not sure where he has come up with that idea. Moreover, I’m not a camper, so I’m hoping that taking him to Bass Pro Shop and letting him look at camping equipment will be a satisfactory substitute. As we look forward to the freedom and nice weather summer brings, I am thankful that Alex is coming up with things he would like to do and that he has made such good progress in the past year that we can anticipate fun summer activities as a family.

“But if we look forward to something we don't yet have, we must wait patiently and confidently.” Romans 8:25