Sharing

 

Of the various characteristics commonly associated with autism, difficulty with social interaction often tops the list. More specifically, people with autism are noted as being unaware of and/or disinterested in what is going on around them, and they are described as generally not sharing their observations or experiences with others. This lack of social interaction is frequently described as aloofness. Although this isolation from others could be a choice, I suspect that sensory overload, along with limited communication skills, may be why some people with autism withdraw from others. With Alex, we have seen that as his sensory issues have been addressed through sensory integration therapy and as his language skills have improved with therapy and time, he has become much more interactive, especially lately.

When Alex was little, he seemed to lack the ability to point to things, which is common in children with autism. He would sometimes place his entire hand on something to call attention to it, but most of the time, he would take us by the hand to show us what he wanted us to see. As he grew older, he developed the ability to point and direct our attention, but until recently he rarely did so. This summer, we have noticed that he points to things as he tells us something he has observed. Most often, as we’re driving in the car, he points to signs at gas stations and happily announces, “Gas prices are going down!” Sometimes this ability to point can be tricky, as he also now likes to point to elderly people and comment, “He’s an old man!” or “She’s an old lady!” Fortunately, he doesn’t talk loudly enough that anyone but us could hear him. Moreover, he actually intends his seemingly rude comment as a compliment because he finds older people interesting. While we’re pleased that he is observing and making conversation, we also have to teach him social skills: pointing at people and commenting on their age is not acceptable.

Along with teaching Alex not to comment on people’s age, we also need to work on having him be less abrupt when he notices mistakes. Because he is very aware of what is going on around him, he notices small details that others may overlook. If a sign is misspelled, he will see it immediately and comment. He is even more likely to note numerical errors, especially on clocks or calendars, which are very important to him. I suspect that he thinks he’s being helpful to comment so that the problem can be addressed. Recently, he was looking at my watch and indignantly told me that the date was wrong. Since I rarely pay attention to the calendar on my watch, I didn’t realize that it had been off since July started and didn’t really care. Alex seemed surprised by my indifference and immediately asked me when I was going to fix it. Of course, to ease his concerns, I fixed it right then, which satisfied him. Similarly, this week, when we took him to the doctor, he noticed that the date was wrong on the electronic blood pressure cuff. The nurse, who finds Alex amusing, laughed when he told her his observation, explained that she had just put new batteries in the gauge, and promised him she’d take care of it for him. Fortunately, she understands his need for accuracy and didn’t take personally his need to comment on the error he had observed.

Perhaps the greatest improvement we have seen this summer in Alex’s interactive skills is in his desire to share information, opinions, and his emotions. In the past, he often spent countless hours reading and researching online and rarely commented on what he had discovered. Occasionally, he would share trivia he’d learned if a particular topic arose. For example, if he heard something about the Pope, he might comment that the Pope lives in Vatican City, the smallest country in the world. Frequently, if he hears a particular date mentioned, he’ll enthusiastically tell us what gas prices were at that time or how the stock market was doing then. Lately, he’ll be reading a reference book or something online and come running to tell us what he’s just read, wanting to share what he’s learned. Similarly, if he sees something on television that catches his interest, he’ll point to it and make an appropriate comment. If we’re in another room, he’ll come galloping (literally) to tell us what he has just seen so that we can experience it with him. What has been most heartwarming to watch, however, has been the development of his ability to express his emotions freely. When he hears songs that he likes on the radio, CD player, or television, he excitedly informs us, “That’s my favorite song!” Interestingly, we’ve discovered that Alex has many favorite songs, but we still love seeing his face light up as he smiles and enthusiastically lets us know how much he likes the music, a familiar tune that makes him happy.

While sharing ideas and emotions may not always come easily for Alex, we are thankful that he is making progress in his ability to communicate what he is thinking and feeling. Not only is this development crucial for his social skills in general, but also we get a better sense of how his clever mind works. Moreover, seeing Alex freely express himself, especially when we can share that joy with him, is a blessing we treasure and a testimony to God’s work in helping him overcome the obstacles of autism.

“’It was not because of his sins or his parents’ sins,’ Jesus answered. ‘This happened so the power of God could be seen in him.’” John 9:3

Swimming

 

Alex has a healthy fear of water, which is actually a good thing. For some unknown reason, many people with autism who wander away from places of safety often gravitate toward water—ponds, lakes, rivers, and swimming pools—where they can drown if not found in time. [For more information on this issue, please click here for my previous blog entry “Autism and Wandering: A Safety Crisis.”] Despite taking swimming classes in high school, neither Ed nor I can swim well, and we know our limitations in water. Specifically, I would never try to swim in water over my head or would always wear a life jacket on a boat because I don’t trust my ability to swim to safety. I’m sure that I have conveyed this sense of being overly cautious around water to Alex, and he recognizes the potential dangers of deep waters to a non-swimmer.

When he was younger, his sensory issues made him overly sensitive to putting his face in water, and he didn’t like getting water in his eyes. Even though he has always loved baths, he was careful not to splash water in his face, and I had to be careful not to get water in his eyes when I washed his hair. Since water in his face seemed to upset him terribly, I delayed putting him in swimming lessons until he was a little older, and I knew that his special needs would require understanding of his sensory issues and delayed motor skills.

At the age of nine, Alex took swimming lessons through our local YMCA that were supposed to be geared for children with special needs. Although the instructors were kind to him, they were teenagers who really had no idea of how to teach special needs children how to swim. In fact, they seemed more interested in visiting with each other than in actually teaching the kids. Consequently, I worked with Alex myself, teaching him the limited skills I know about swimming, which meant he didn’t learn much that summer. Nonetheless, he enjoyed being in the water, yet still maintained a cautious awareness about not getting in deep water. Like Ed and me, he knows his limitations and keeps himself safe by not getting in over his head, literally.

A few weeks ago, an autism mom friend had shared that the local YMCA offers open swimming time for people of all ages with special needs for a very reasonable fee. Moreover, they offer this session before the facility’s opening hours so that the families have more privacy in the locker rooms and the pool. Because our kids’ behavior can be unusual at times, we don’t have to worry what other people think. Since this seemed to be an ideal situation (added to the convenient location of the Y, which is less than five minutes from our home), I asked Alex if this was something he thought he would like to try. He acted enthusiastic about going swimming and asked me several times about going to the pool the week ahead of the first session. However, I was still unsure how he’d react once we actually went the first time.

Last Sunday was the first session for special needs swimming, and he eagerly anticipated going. One of his concerns was whether they would have clocks because he couldn’t wear his watch; keeping track of time is very important to him. This fear was eased immediately when he saw that they had not one clock but four—one on every wall. I was pleased to see that the pool designated for this activity was not very deep and offered a gradual step down into the water. Also, the water was comfortably warm, which is important to Alex and me because we get cold easily. When we first got there, Alex seemed to have some trepidation about getting in the water, which really didn’t surprise me. He gradually stepped into the water, but didn’t seem to want to get much deeper than his knees as he held on tightly to the railing with one hand and my hand with the other. Knowing that Alex must always do things on his own terms, I just waited until he was ready to move forward. He kept asking me about how deep the water was, and I reassured him by pointing out the markings on the pool walls and by showing him that the water was only up to my waist in the middle part of the pool.

After a while, he decided to venture away from the safety of the very shallow water and railing, and he was willing to walk into the waist-deep water, clutching my hand for security. With time, he even played catch with a ball, which meant that he had to let go of my hand and trust himself in the water. By the end of the session, he had walked back and forth across the pool several times, each time seeming more comfortable and confident in the water. However, I knew that the first session had truly been a success when he asked me if we could come back again the following week. Sometimes things work out even better than we plan.

Even though I hope that Alex someday may learn to swim so that he can be safe in the water, I’m pleased that he knows his limitations and shows good sense about not getting in deep water. Moreover, I’m also glad that he’s willing to try new things, to attempt to overcome his fears and sensory issues, and to learn that these new experiences can bring him enjoyment.

“…and it was a river that I could not cross; for the water was too deep, water in which one must swim, a river that could not be crossed.” Ezekiel 47:5

Improvement

As our summer is coming to its halfway point, I realize that signs of Alex’s progress are everywhere, especially compared to the past three summers, where his behavior was unpredictable, making him untrustworthy.  In the evenings after Alex has gone to bed, Ed and I regularly compare notes about how things have gone that day; this is something we have done for years. Frequently, we have discussed Alex’s problematic or concerning behaviors and brainstormed possible causes and ways to handle these issues. Lately, however, we marvel at how well he is doing. As Ed commented last night after the three of us had enjoyed a pleasant dinner at a restaurant, we never take these good times for granted because we know how precious they are.

One of the nicest surprises this summer has been the emergence of what we have dubbed “Nighttime Alex.” For the past few years, Alex has often been too tired in the evenings to enjoy activities and preferred to go to bed early. Frankly, we were relieved that he wanted to go to bed early because his behavior was tiresome for us, and we all needed a break from each other. Now, Alex seems to be at his best in the evenings, and we have been thankful that we can now do fun outings together like typical families.

This summer, we have been able to attend several free concerts outdoors at our local downtown park. Not only does Alex have the energy to stay awake, but he also has the energy to bob to the music, clap his hands, and enthusiastically push the cart we use to transport our folding chairs. With his eclectic tastes in music, he has enjoyed listening to music from the 1950’s and 60’s, jazz, rock and roll, and even Celtic music, and he’s looking forward to the upcoming band concerts. To satisfy his concern of “Will there be food?” I always pack something to eat and drink, which makes his evening complete. Besides the music and snacks, he likes to watch other people, and he finds little kids especially entertaining. He always behaves himself at these concerts, doesn’t seem bothered by the noise and crowds, and sits calmly and patiently the entire time, never asking when we are leaving. Not only does he relax and enjoy the show, but Ed and I can also relax and enjoy the show, knowing that he’s content.

Another outing we have savored this summer is going to restaurants. Although we have gradually been getting Alex used to dining out, he has made improvements recently that make going to restaurants more pleasant. First, he is more trustworthy than he used to be, so we don’t constantly worry that he’s going to grab things or say things to get attention. Also, he has become much more patient about having to wait, so he doesn’t get agitated while his food is being prepared. He additionally maintains that calm demeanor when plans have to change suddenly. For example, if a restaurant is too crowded and we decide to go elsewhere, he readily accepts that change, or if an event is rained out, he’s willing to do something different. This spontaneity makes life so much easier for us because things don’t always go as planned. Finally, a major change for Alex is that he is starting to order from the menu himself instead of relying on me to order for him. Thanks to the coaching from his therapist, he has learned the skills and confidence he needs to be more independent, and he seems to feel proud that he can tell the waitress what he wants.

This week we saw evidence of his increased confidence when we took him to the eye doctor for his annual exam. Because his behavior has improved, Ed and I were less nervous about how he would handle the appointment, and he did very well. Not only was he fully cooperative during all the testing, but he also answered all the questions he was asked without any hesitation. As we were selecting new glasses for him, due to a slight change in his prescription, he noticed the price of the frames and showed concern about the cost, saying, “Oh no, that’s too expensive.” After I assured him that we weren’t worried about the cost because he needed new glasses and told him that insurance would pay part of the expense, he seemed to be relieved. We were pleased with how nicely he interacted with the staff, who seemed to find him quite likeable. In fact, the woman who adjusted his glasses kept commenting on how sweet he was, which made us proud.

Yesterday morning, we took him to the monthly Saturday social activity offered by one of the agencies that provide services for him. Alex looks forward to these events every month, and he was especially excited that the planned activity was watching the Disney movie Frozen. Even though he has seen this movie before, he still eagerly anticipated going. Once again, he patiently waited, acted pleasant, and sat nicely the entire time. Instead of constantly worrying about how he was going to behave, Ed and I were able to relax and enjoy the movie with him.

As we have seen progress in Alex this summer, we are grateful that we can do typical family outings because he can behave himself. While we are pleased that he has learned to act appropriately in public and even be quite pleasant, we are even more pleased that he can engage in activities that make him so happy. Although it seemed to take a long time for him to master many of these skills, we are thankful for the improvements that make our lives better and happier and know what a blessing this progress truly is.

“I know all the things you do. I have seen your love, your faith, your service, and your patient endurance. And I can see your constant improvement in all these things.” Revelation 2:19

Special Requests

 

Last night, Alex, Ed and I were watching reruns of the television comedy series The Big Bang Theory, which is one of Alex’s favorite shows. One of the main characters, Sheldon, reminds us of Alex in some ways because, like Sheldon, he is funny and smart, but he also has difficulty with social skills and can be demanding at times. In the episode we were watching, Sheldon had a cold and was insisting that his friend Penny put Vicks VapoRub on his chest while she sang “Soft Kitty.” Although this scene was meant to be ridiculous and funny, I have played the role of Penny to Alex’s Sheldon, fulfilling his requests that things be done his way. In fact, sometimes I feel as though I’m a participant in a strange game show where Alex plays the host and expects me to follow his lead.

For example, Alex takes various pills four times a day, and I usually administer those pills at least three of the four times daily. Although Alex is very good about taking his pills, he insists that I must tell him the correct name for each one. Fortunately, I not only know the names of all his medications and supplements, but I also can recognize them by shape, size, and color, which makes reciting the names no problem for me. (Alex doesn’t know this, but I have also memorized the brand names and the generic names of all his medications. I dare not let him know, or he’ll want me to rattle off both names instead of just one.) When I’m at work, Ed gives him the morning doses of his medications, and Alex asks him to name the pills, too. However, Ed manages to escape that task by telling Alex that he counts the pills instead of identifying them and reminds him that only Mommy names them. Apparently, Alex is satisfied with that explanation, and Ed doesn’t have to learn which pills are which. I, on the other hand, must continue to play amateur pharmacist because Alex knows that I can name those pills. I’m never certain whether he is really interested in what he’s taking or if he’s trying to catch me making a mistake. Whatever his reasoning, I indulge his curiosity and show off my knowledge of which pill is which.

Another recent routine Alex has developed for us is vitals night. Every Saturday evening, Alex insists that we use our home electronic blood pressure cuff to measure the blood pressure and pulse for each of the three of us. Besides taking these vital statistics, he also wants me to write down our results so that he can compare the data. This weekly process has become somewhat competitive to see who has the lowest blood pressure and pulse. Although Alex, who certainly has the age advantage, usually wins this “competition,” last night, I had the lowest pulse, and last week I swept the challenge with the lowest blood pressure and pulse. Considering all the dancing I do to Alex’s tune, I’m amazed that my vitals don’t seem to reflect the stress I feel at times. Perhaps running around to meet his demands keeps me in good physical shape. Probably this weekly event is a good way to keep an eye on our health, and I’m proud of myself for not bowing to Alex’s request that we do this process every day, telling him that once a week was certainly often enough. Evidently, I was convincing because he didn’t question my resolve on that issue.

Aside from the health-related routines regarding medications and vitals, Alex also insists that we provide him with receipts from any purchases we make. Originally this started with letting him see our credit card receipts when we bought gasoline for the cars. We knew that he liked to follow gas price trends, and these receipts allowed him to monitor whether gas prices were going up or down. Lately, however, he wants to see all our receipts, such as those from grocery store or restaurants. I’m not sure whether he’s keeping mental notes about how much we spend or whether he’s just nosy about what we bought and where we bought it. We’ve learned simply to hand him our receipts the minute we walk in the door from shopping or errands so that he can study our purchase history, which seems to make him happy.

To be fair, he gets his need to retain receipts honestly from me. I always keep my receipts because I figure I’ll need them some time. (My friends who know the following story seem to find it amusing yet reflective of my OCD tendencies organizational skills.) When I was a sophomore in high school, I was called down to the principal’s office—the only time I was ever sent to the office when I was in school because I followed rules to the letter. On my way there, I tried to think of other students’ misbehavior I might have witnessed because I was certain I hadn’t done anything wrong. When I arrived, the principal told me that my homeroom teacher turned in my name because I hadn’t paid my book rental. I breathed a big sigh of relief and told him, “No, Sir, I did pay. In fact, I have my receipt right here.” As I pulled out my receipt to prove my innocence, he seemed bemused that I actually had the receipt handy, apologized to me, and told me I was pretty clever to be able to prove easily that I’d paid the book rental. Maybe Alex, like me, knows the value of keeping receipts. Somehow, I suspect that he just enjoys looking at the list of items and the prices and that he likes to make us jump through hoops. Luckily, I can rise to his challenges and play “Name That Pill” and “Provide That Receipt” with the best of them. Oh, and I can meet his demands all the while keeping my blood pressure low. However, he’d better not ask me to sing “Soft Kitty”; now that would be asking too much.

“At that time you won’t need to ask Me for anything. I tell you the truth, you will ask the Father directly, and He will grant your request because you use My name.” John 16:23