Sunday, July 27, 2014

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

Sunday, July 20, 2014

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

Sunday, July 13, 2014

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

Sunday, July 6, 2014

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

Sunday, June 29, 2014

Chex, Cookies, and Caroline's Carts

 
Recently Alex saw a commercial for Chex cereal snack mix and asked me if we could buy some. Because, like many children with autism, he has been on a strict gluten-free and casein (milk)-free diet since he was seven years old, he knows that he can only eat foods that do not contain these proteins to which he is sensitive. Even though he cannot eat the prepared Chex snack mix, I knew that we could find a recipe and easily adapt it to fit within the guidelines of his restricted diet. Starting with the original Chex snack mix recipe from 1952 that I found online, I made a few changes and came up with a tasty result that Alex really liked.

Here is the recipe I adapted to make gluten-free, dairy (casein)-free Chex snack mix. Melt ½ cup of Fleischmann’s unsalted margarine. Add 1 tablespoon French’s Worcestershire sauce and mix. Combine 2 cups of Chex rice cereal, 2 cups of Chex corn cereal, and 1 cup Snyder’s of Hanover gluten-free, dairy-free, casein-free, egg-free pretzel sticks in a baking pan and pour the margarine/Worcestershire sauce mix over the cereal and stir. Sprinkle ¼ teaspoon of table salt and ¼ teaspoon McCormick garlic salt over the cereal. Bake in a 300 degree oven for 30 minutes, stirring every ten minutes. Cool and store in an airtight container.

When we first discovered that Alex was sensitive to glutens and caseins, I remember being overwhelmed by trying to figure out what he could and couldn’t eat. At that time, gluten-free diets were less common, and I relied upon online resources and special diet cookbooks to make Alex foods he could eat. Fortunately, gluten-free and dairy-free foods have increased in quantity and quality over the years. What used to be available only in health food stores is now readily available in many grocery stores. Items I used to have to bake from scratch, such as cookies, are now offered in a nice variety of flavors and textures. Moreover, the taste and textures of gluten-free and dairy-free foods has improved significantly over the years. Previously these foods often resembled their cardboard containers in flavor and texture, but now these foods mirror their non-special diet counterparts and are quite tasty.

One of the best discoveries we have made recently is the array of products from Enjoy Life. This company makes cookies, cereals, and baking goods in a dedicated facility, which means that no allergens are present to cross-contaminate their foods. Showing their concern for a variety of food allergies, their foods are free of eight common allergens—wheat, dairy, peanuts, tree nuts, egg, soy, fish, and shellfish. In addition, their products contain NO casein, potato, sesame, sulfites, artificial ingredients, or GMO’s. Although I was a little skeptical how tasty their products might be, we discovered that they are delicious. In their crunchy cookie line, Alex is a fan of their vanilla honey grahams and their sugar crisps. (They also make crunchy chocolate chip cookies and double chocolate cookies, but we keep Alex away from chocolate, which seems to make him hyper.) Besides their crunchy cookies, Enjoy Life also makes soft-baked cookies, including chocolate chip, double chocolate brownies, gingerbread spice, and Alex’s favorite chewy cookie, snickerdoodles. While we have been able to find these cookies at our local Strack and Van Til grocery stores, these products are also available online directly from Enjoy Life or other retailers. In addition, their website (http://www.enjoylifefoods.com) offers a store locator where their products can be purchased; their helpful website also provides more information about their products along with recipes. I’m pleased to have found a company that caters to people with food allergies and makes delicious cookies Alex can eat, which has made life better for us.

We are also fortunate that the chain of Strack and Van Til grocery stores in Northwest Indiana support people with food allergies, offering a wide variety of foods for people on special diet plans. In addition, we have been able to attend two of their special foods tasting events, where Alex was able to sample various gluten-free and dairy-free foods to decide whether or not he liked them. In fact, this was how we discovered Enjoy Life cookies. Another way that the Strack and Van Til stores have shown their concern for their special customers is to provide Caroline’s carts in all of their stores. These grocery carts allow parents of special needs children to shop more easily because their special design permits even older children to ride securely facing their parents without their parents having to lift them as they would with a regular cart. After lifting Alex for many years into a grocery cart for his safety, I clearly see the value of Caroline carts for special needs children. Once when Alex was beyond the age typical children ride in the grocery cart seat, an elderly man watched me heft Alex up into the cart and commented, “Honey, you shouldn’t be lifting him into the cart; he should be lifting you!” Fortunately, Alex no longer needs to ride in the grocery cart, but I would have loved a Caroline’s cart when he was younger.

Designed by Drew Ann Long, these carts (as depicted above) were named after her special needs daughter Caroline and developed to keep special needs children safe while their parents shop. The best part of these carts is that parents can easily maneuver children into the cart seats without having to lift them as much as they would with typical grocery carts. Produced by the company Technibilt, Caroline’s carts are now available in stores in more than forty states in the U.S., including large supermarket chains such as Kroger, Publix, Winco, Albertson’s, Shop Rite, and Whole Foods. In addition, these carts are also available at the commissaries of many U.S. military bases. To find stores that offer Caroline’s carts, the Caroline’s Cart website (http://www.carolinescart.com) includes an interactive map to show availability of the carts and provides more information about these helpful inventions. I’m pleased that Caroline carts are now available so that parents of special needs children can more easily and safely place their children in grocery carts.

While parenting a special needs child presents certain challenges that typical parents may not realize, the availability of new products makes life easier and better for special needs children and their families. Moreover, companies who offer these products readily inspire a loyalty and gratitude from the customers whom they help. I’m thankful that our local grocery chain, Strack and Van Til, not only offers Caroline’s carts for special needs children but also offers a wide assortment of foods for people with special diets. While these gestures may seem small, to special needs parents, they mean a great deal.

“Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!” Psalm 34:8

Sunday, June 22, 2014

Bedtime Routine



This week, I was reading an online article about backstage riders, or contractual demands musicians make regarding what must be provided in their dressing rooms before they perform. While some claim these specific requests ensure that more important requirements, such as safety issues, are met, most of them seem to cater to the whims of pampered stars who view their wants as needs. Perhaps the most famous example is the rock band Van Halen’s rider demanding a bowl of M&Ms with all the brown candies removed. Singer and American Idol judge Jennifer Lopez insists that her dressing room be decorated completely in white with white furniture, white curtains, and white flowers. Former Beatle Paul McCartney’s contract includes the rather unusual requirements of 24 bars of Ivory soap and 19 (not 20) six-foot-tall leafy plants. Displaying diva behavior, Madonna insists that a new toilet seat be installed in her dressing room bathroom; Barbra Streisand takes this a step further by demanding that rose petals be placed in her dressing room toilet. Like these stars, Alex has his own list of requirements that must be met; however, his “needs” focus on bedtime instead of showtime. If he knew about backstage riders, he would be likely to want his own contract in writing to make sure his list of demands were met so as not to disturb his need for a nightly routine.

When he was little, Alex’s contract would have included the following bedtime requirements:
  • Favorite books and stuffed animals (specifically Barney the purple dinosaur and two teddy bears Mommy made, a.k.a. “friends”) placed strategically in the bed
  • Recitation of specified bedtime story (Goodnight Moon, later to be replaced by Veggie Tales’ book Time for Tom), complete with perfect page turning, appropriate voice modulation, and absolutely no changes of wording
  • Five sippy cups of various colors lined up on the dresser, each containing a different beverage—milk (prior to the milk-free diet), water, orange Hi-C, orange juice, and apple juice
Fortunately, Alex has outgrown those needed items in order to go to sleep. His current contract would instead include the following requests:
  • Digital scale for weighing self nightly, accurate to 1/5 of a pound
  • Digital electronic blood pressure cuff for measuring “vitals” (blood pressure and pulse) on a weekly basis
  • Prescription progesterone cream rubbed into forearms nightly to combat acne on face
  • Burt’s Bees baby oil rubbed into outer ears to combat chronic dry skin
  • “Tuck you in,” requiring two pillows (one under the head and one over the head) and specific blankets, depending upon the season, including NASCAR quilt, Chicago Cubs fleece blanket, blue sheet, white blanket, and “states blanket” (actually a quilt I made for him when he was five that has a map of the United States and the individual states surrounding it on one side)
  • “Scootching”—a second or third attempt at “Tuck you in” when head is not appropriately placed on the pillow
  • Sound effects for “scootching”—emulating the sounds made when game show contestants lose (My version goes “Wah wah wah waaahhhh”; to which Alex responds “Doh doh doh doooohhh.” This always makes both of us laugh.)
  • Recitation of nightly prayers, specifically the “Now I lay me down to sleep” version ending with “God bless” of 34 specific people’s names (If any of these people who are important to Alex are not mentioned, he adds their names to the end and acts slightly annoyed that I forgot to include them. “Amen” must be said in unison.)
  • Goodnight kiss on the cheek or forehead, followed by mutual declarations of affection—“Love you”
  • “See the stars”—turning on one of his two star projectors, the one that accurately displays constellations in white on the ceiling (but requires being turned off once he’s asleep) or the one shaped like a turtle that displays whimsical green depictions of the moon and stars on the walls and ceiling (not scientifically accurate but has an automatic shut-off after an hour, which makes it more convenient)
  • Recitation of nightly ditty—“Good night, sleep tight, don’t let the bedbugs bite!” (I must say the first part but allow Alex to finish the ditty with “the bedbugs bite.”)
  • Close door to permit enough darkness for the star projections to be seen and to signal that it’s time to go to sleep.
While this complicated routine may seem a bit much, Alex and I have perfected the steps after daily repetitions so that we can run through it fairly quickly. If I forget any of the details, he is quick to remind me what still needs to be done, and he is usually patient about any occasional omissions I make. Certainly, like a rock star, he is pampered, probably because of his autism and his only child status. Since I understand his need for routines, I maintain them, and because I have the time to focus only upon him, I cater to his whims, knowing that he will sleep easily through the night once we have met all his requests. To be honest, this bedtime routine is sacred to me, as well, because during this precious time Alex is the most affectionate and content, which makes my tasks in helping him get ready for bed worthwhile. Eventually, he will be independent and not need me, but for now, I savor the sweet bedtime routine, even those times when it seems tedious, pleased to have a child who prays, expresses love, and knows contentment. To share that experience is truly a nightly blessing.

“In peace I will lie down and sleep, for You alone, O Lord, will keep me safe.” Psalm 4:8


Sunday, June 15, 2014

Father and Son

 
An old Jewish proverb states, “God couldn’t be everywhere, so He created mothers.” As an addendum to that saying, I would add that because mothers can’t be everywhere, God created fathers. Like all other moms, and especially those who have children with special needs, my role involves juggling various responsibilities to make sure Alex gets what he needs. However, without Ed’s support, encouragement, and steady presence, I would never be able to manage all those tasks required of me. Just this past week in a variety of situations, I was reminded how well we complement each other as parents, both working toward helping make Alex’s life the best it can be.

On Monday, we took Alex to his psychiatric nurse practitioner for his regular six-month appointment to monitor his health and progress. When we go for medical appointments, my primary responsibility is to act as Alex’s health care advocate, speaking the medical lingo with the professionals, and Ed’s primary role is to keep Alex calm and entertained as we wait. As Ed chatted with Alex about the Beatles, I rattled off the prescription medications he is taking, the dosages, and the times of day he takes them. When we met with his nurse practitioner, I gave a brief summary of his progress and behavior as well as answered her questions. While I try to be objective, Ed takes the opportunity to highlight Alex’s accomplishments, making no secret how proud he is of his son. Of course, both of us were pleased that not only were Alex’s blood tests and vitals excellent, but also that he handled himself well, answering her questions pleasantly and politely.

On Wednesday, I went out to dinner with some friends for a Girls’ Night Out, leaving Alex and Ed to enjoy one of their “Boys’ Suppers.” This means that Ed cooks seafood, which they both love and I despise, and they look forward to these opportunities to eat their favorite food together. When I came home, I found Alex in his favorite spot, stretched out on the loveseat with his long legs hanging over the end, and Ed stretched out on the couch, both of them contentedly watching baseball on television. Knowing that Ed takes good care of Alex and that Alex enjoys time alone with his dad allows me to enjoy some time with my friends and gives me a break from the autism mom routine.

This week, I wondered aloud how much Alex’s therapies were benefitting him, not being critical of his terrific therapists, but just questioning how much of his progress simply comes with time and maturation. Ed immediately listed all the positive aspects of Alex’s therapy, reminding me how valuable those sessions are to Alex. Perhaps one of the greatest strengths of our marriage and partnership as parents is that when one of us is flagging in energy and enthusiasm, the other points out all the good to lift the spirits and encourage moving forward toward our goal of making Alex better.

Yesterday, we took Alex for a Saturday Social monthly event at an agency that provides services for adults with disabilities. A couple of months ago, we had taken him for the first time to this program; that time the activity was crafts, which are not among Alex’s favorite things to do. However, he apparently had a good time because he pestered me to call them to find out what the activity was for this month. When he found out the planned activity was Bingo, he was delighted because the combination of letters and numbers in the game are right up his alley. Since Alex did so well the last time we took him, I had told Ed that he didn’t have to go and that I could take him myself. Nonetheless, Ed decided to go along with us, even though he was the only male there other than Alex. Even though I know he hates situations where he has to make small talk, he pleasantly chatted with people and cheered on Alex, who won four prizes. Besides being there for Alex, I know he was there to support me, to make me feel more comfortable in a relatively new situation.

As we celebrate Father’s Day today, I am thankful that God blessed my son with such a loving and caring father. Even though life with autism has meant that our life is much different than those families who have typical children, Ed makes the best of our situation, focusing on Alex’s strengths and not his weaknesses. In times of crisis, he provided the strength I needed to get through the situation, and in the day-to-day routine, he offers his opinions but trusts my judgment. While Alex can’t fully express his feelings, I know that he adores his father and thinks he’s the smartest and funniest guy he knows, and he knows Ed feels the same way about him. Through all the obstacles, their love has grown stronger, and I am so proud of both of them for the men they have become. Happy Father’s Day!

“For the Lord corrects those He loves, just as a father corrects a child in whom he delights.” Proverbs 3:12

Sunday, June 8, 2014

Commencement


Dear Class of 2014 (especially my two nieces who just graduated from high school),

As you listen to commencement addresses, you hear all sorts of platitudes about how to live your life. Some offer good advice, and you should pay heed. Despite all that you have learned in your education, you will learn so much more in life. Sometimes you will be prepared with the wisdom you have gained, but many times in life, experience will be your best teacher. I can confirm that truth from my own experience. Despite all I learned from my excellent education, nothing really prepared me for the most important role in my life as an autism mom. When I look at photographs of myself at your age, I see an innocent, wide-eyed, hopeful girl who had no idea what challenges she had ahead of her. Yet, raising a child with autism has made me do all those things your graduation speakers have told you to do—dream big, work hard, and never give up—in ways I never thought I could do.

Aside from just the day-to-day experiences of helping my son overcome the challenges autism has presented, I have learned valuable lessons from scriptures and country song lyrics that have reminded me what’s really important in life: patience, perseverance, presence, faith, hope, and love.

What no one tells you about life is that you’ll spend a great deal of time waiting for something—waiting for a phone call, waiting in line, waiting for something good to happen. While you wait, just learn to be patient, which will serve you well when you are waiting for situations to get better. As Amy Grant sings in “It Take a Little Time,” “It takes a little time sometimes to get your feet back on the ground. It takes a little time sometimes to get the Titanic turned back around. It takes a little time sometimes, but, Baby, you’re not going down. It takes more than you’ve got right now. Give it; give it time."

Part of that waiting process is plugging away and never giving up, especially when quitting would be so much easier. As I’ve watched my son struggle to do tasks that most people can do easily, he has taught me the value of perseverance. He knows that eventually he’ll accomplish what he has set out to do, and as he often reminds me, “Wait and see.” In the words of Leanne Womack’s beautiful ballad, “I Hope You Dance”: “Whenever one door closes, I hope one more opens. Promise me that you’ll give faith a fighting chance, and when you get the choice to sit it out or dance, I hope you dance.”

With all that waiting and working toward the future, we need to remember to savor the present, to appreciate all the good in the right now that we can easily miss worrying about the future. In her song “So Small,” Carrie Underwood offers good advice: “While you sit around thinking about what you can’t change and worrying about all the wrong things, time’s flying by, moving so fast. You better make it count ‘cause you can’t get it back.”

So how do we deal with all the worries in life? Faith will carry us through those times when we fear the unknown, the overwhelming, and truly terrifying.  Life with autism has strengthened my faith because I’ve learned that I cannot do things on my own, and faith has comforted me by assuring me God is in control. As Garth Brooks sings in “The River,” “There’s bound to be rough waters, and I know I’ll take some falls. But with the Good Lord as my captain, I can make it through them all.”

In those rough waters, faith carries us, but hope sustains us, reminding us that what may seem permanent is only temporary. As we look forward with anticipation, we know that things will get better. In the words of the Rascal Flatts song “My Wish,” “My wish for you is that this life becomes all that you want it to, your dreams stay big, your worries stay small, you never need to carry more than you can hold.”

While learning patience, perseverance, and presence will enhance our lives, faith and hope are vital to our existence. As the scriptures remind us, even greater than faith and hope is love. Without that overpowering force, our lives become meaningless. Love motivates us to help others, to be sacrificial, and to become the best people we can be for others’ sakes. Pure love guides us to do the right thing and reminds us that we’re never alone. As Lady Antebellum advises in their song “Compass,” “So let your heart, Sweetheart, be your compass when you’re lost, and you should follow it wherever it may go. When it’s all said and done, you can walk instead of run ‘cause no matter what, you’ll never be alone.”

Congratulations, Graduates, and as you step out into the “Real World,” I pray that you find patience and perseverance when you need it, enjoy the present, and remember to hang on to hope, faith, and love, which will always see you through any circumstance and help you fulfill your destiny in life.

“There are three things that remain—faith, hope, and love—and the greatest of these is love.” I Corinthians 13:13

Sunday, June 1, 2014

Right Place, Right Time


I don’t believe in coincidence. Too many remarkable yet seemingly random things have occurred in my life that remind me the hand of God is orchestrating events for my benefit or so that I may do some good. For instance, when I was pregnant with Alex, I developed a rather rare autoimmune blood disorder causing my platelet count to drop, leaving me at risk for bleeding. (Thanks to the healing of God, I no longer have this chronic disease.) To rule out other conditions, I underwent a bone marrow biopsy, a procedure often characterized as quite painful. Thankfully, I found the experience did not live up to its hype and was more of a feeling of pressure than of pain. Unfortunately, my test results came back inconclusive, requiring a second bone marrow biopsy. At the time, I was frustrated that I had to go through another biopsy, but I was more upset that I would have to wait longer for results that would rule out a potentially life-threatening condition.

After the second biopsy, which was as uneventful as the first, the doctor asked me to take the sample to the lab myself, which struck me as odd at the time. When I arrived at the hospital lab, I explained to the clerk that I needed to drop off a bone marrow biopsy, which seemed to surprise and horrify her at the same time, and she quickly called for a technician to deal with the situation. As I waited for someone to take my bone marrow sample, a young woman appeared behind me and politely told me that she had overheard me tell that the clerk that I’d had a bone marrow biopsy, and she wondered what that was like. She wasn’t being nosy; she explained that her little girl needed to have one and had heard they were terribly painful. As a mother, she wanted to be able to prepare her child and was worried about what she might have to experience. At that moment I knew why I needed to have two bone marrow biopsies and had to carry the second one to the lab myself—so that I could reassure a young mother that her daughter, like me, would get through this testing fine. As she thanked me, I could see relief on her worried face, and I knew that God had placed me at there at the right moment so that I could be of help.

When Alex was hospitalized two years ago for extreme anxiety and aggression, we were terribly upset that he would have to be away from home for the first time in his life yet knew he needed intensive intervention to get better. While we waited in the emergency room for the nurse from behavioral medicine to come get him to admit him for in-patient treatment, I prayed for a sign that we were doing the right thing. As I looked up, I saw that the nurse, who became one of Alex’s primary caregivers during his hospitalization, was wearing her identification tag on a lanyard nearly identical to the one I wear for my job. Our lanyards, emblazoned with the name Jeff Gordon and number 24, show our support for our favorite NASCAR driver. I knew at that moment God had sent her to mother Alex in my place when he needed specialized care we could not give. That small sign in the form of a fellow NASCAR fan reassured me that everything would eventually be fine.

A couple of weeks ago, I was chatting with one of the technicians at the pharmacy where we get Alex’s medications. As she saw the name of the psychiatric nurse practitioner who prescribes his medicine, she told that she also worked part-time at a medical facility in town and had heard that Alex’s nurse practitioner was moving her practice here. A few days later, we received a letter from his nurse practitioner confirming what the pharmacy technician had told me: she is moving her office to our town this summer. This change means that we will no longer have to drive forty minutes to see her; she will only be ten minutes away from our home. While she could have moved her office to several towns in the area, she chose to practice here. I know this move was not coincidental; God made this more convenient for us.

Yesterday, I had another one of those being at the right place at the right time experiences. Every few months, we have to take Alex for routine blood tests to make certain the medications he takes are the proper dosage and are not affecting his metabolism adversely, especially his liver and kidneys. Fortunately, Alex eagerly anticipates blood draws; he never minds having medical procedures and finds them strangely entertaining. I think we have been blessed to work with medical personnel who have always been kind and gentle with him so that he has no fear of doctors and medical procedures. In addition, I’m always tried to schedule appointments carefully so that he never has to wait long, which can make him anxious. Fortunately, we have also found a nearby lab where their kindness and efficiency always makes blood draws easy for Alex.

When we pulled into the parking lot, Ed and I noticed that the car parked in front of us had an Autism Awareness license plate, which caught our attention. After the registrar quickly processed our paperwork, a lab technician whom we had not seen before treated Alex very kindly and seemed to know instinctively how to work with him, even though we had not mentioned his autism, as we often do. Once again, he made us proud as he handled the blood draw calmly, never complaining a bit. As we were leaving, we thanked the lab technician, who commented that she has a son like him. I then noticed that her identification card lanyard was decorated with the autism puzzle pieces logo and realized that she, like me, is an autism mom. We could have taken Alex anytime to the lab, which is open 24/7, but we were supposed to meet this mom.

While Ed and Alex went to wait in the car, I talked to her briefly, and we compared notes. Although her son is younger, she has experienced many of the same things we have. As she expressed some concerns about recently putting her son on medication, I was able to reassure her how much the same medication had helped Alex. In a matter of minutes, we had bonded because we shared a devotion to our sons with autism, and we could empathize because of our similar experiences. After she had asked me a few questions, I sensed that she wanted to talk more, but we both knew that we didn’t have the time right then to do so. I wrote down my e-mail address for her so that she could contact me, which she seemed to appreciate, and she told me to ask specifically for her anytime Alex needed lab work. Once again, I knew that this meeting was not random; God intended for two autism moms to come together to help each other. Although I am confident that God always directs our steps, whenever these “coincidences” occur, He reminds me that His plan for our lives is good, reassuring me that in the end, everything will be all right.

“…He makes everything work out according to His plan.” Ephesians 1:11

Sunday, May 25, 2014

Looking Forward

As I mentioned in my “May Days” blog entry three weeks ago (5-4-14), Alex has been a little off this month. Suspecting that the ridiculously high pollen counts make him slightly irritable, we have tried to be especially patient and reassuring with him in recent weeks since he really can’t help his behavior. Nonetheless, his current obsession with bath time and his need to ask us repeatedly when he will take a bath every day has become tedious. Even though we answer him every time he asks, he still acts anxious. Since he responds better to verbal cues than spoken reminders, I have written reminders for him so that he can look at the memo instead of asking us. However, he carries this small slip of paper around the house with him and doesn’t always remember where he has put it. This creates a whole new level of anxiety because then he can’t find the paper with the time written on it and insists that we help him find his note instead of just writing a new one. Sometimes I think he deliberately “loses” the note just to watch us spring into action, searching the house high and low until we find it.

Yesterday Alex again started with repetitively asking what time he’d take a bath. After answering him several times and deciding that I did not want to spend my Saturday hunting for his reminder note, I came up with an idea. Having watched my middle school students (and a few of my colleagues who have imitated this concept) write reminders on their hands, I decided that I would write Alex’s bath time in the palm of his left hand. As I explained what I was going to do, he looked askance at me, yet also seemed fascinated. As I began writing 6:15 on his hand, I was reminded of the time several years ago when I came home from work to discover he had written dozens of pi digits on his foot and leg. When I asked him why he had done that, he nonchalantly explained, “Couldn’t find paper.”

Although I was a little worried that he might think that writing on himself was an acceptable alternative to writing on paper, “Desperate times call for desperate measures.” After I finished writing the highly anticipated time on his palm, he studied it and then asked me, “Is that a tattoo?” Having seen athletes with tattoos, Alex is not a fan of them and seemed concerned that I had permanently defaced his hand. I reassured him that it was not a tattoo because the numbers were temporary since the ink would wash off his hand when he did take his bath in the evening.

Throughout the day, we saw Alex checking his palm periodically to remind himself when bath time would be.  Not only thankful that this temporary tattoo reassured him and kept him from asking us the same question over and over, I was also feeling pretty proud of myself for coming up with a rather clever solution. At dinner, we watched him check his left hand a few times to view his reminder, which magically seemed to calm him. Still a bit concerned about the permanence of the ink, he asked when the numbers would be gone. I reminded him that they would wash off during his bath, which seemed to satisfy him. Then he asked us, “Is that something to look forward to?” As much as he found those numbers on his hand helpful, he was also looking forward to their disappearance, knowing that the event he was anticipating all day had arrived. Thus, I realized that Alex is even cleverer than I am because he’s figured out one of the best things in life—looking forward to something special.

At this time of the year when young people celebrate the end of the school year with proms, award ceremonies, and graduations, I feel a bit wistful that Alex has missed out on these celebrations. However, I’m grateful that he really doesn’t know what he’s missing and that he doesn’t fully realize what autism has denied him in life. For him, bath time, a seemingly ordinary event, is something to be anticipated and celebrated, a simple joy he savors. Even looking at the time written on his hand that reminds him of this upcoming event makes him happy. He doesn’t need a highly planned big celebration; little things in life that others would take for granted bring him contentment.

His ability to find spontaneous joy was evident this week as we watched the finales of the musical talent television shows The Voice and American Idol. At one point during The Voice, he suddenly and eagerly told me, “That’s my favorite song!” Although I don’t think he’d ever actually heard the song before, somehow it sparked an enthusiasm in him that made him smile and sway to the music. The next day, while we watched American Idol, he became equally enthusiastic as he recognized a familiar Fleetwood Mac song, which made him happily get up and dance. He had looked forward to the finales of these shows, and he wasn’t disappointed.

While I sometimes feel bad that Alex doesn’t get to experience the rites of passage most young people do, I realize that he also escapes many of the disappointments. For him, a relaxing bath or hearing a song he likes, familiar or not, makes him happier than going to a big celebration. Moreover, he has learned one of the great secrets of life—anticipation can be better than the actual event. As we wait with expectancy for Alex to make progress, we need to remember that looking forward to the future makes the wait easier. In the meantime, we should enjoy the seemingly small things that bring us happiness, as Alex knows. Looking forward is a good thing; maybe I should write that on my own hand.

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

Sunday, May 18, 2014

Annual Waiver Meeting


This week, we had our annual meeting with Alex’s “team,” a group of professionals whom we have chosen to work with him to help him reach his potential, and we were very pleased with how well things went. In August 2012, he qualified for the state Medicaid waiver that provides services to people with intellectual disabilities. In our home state of Indiana, parents typically place their children on the waiver waiting list and know that they will likely wait for many years—often more than ten years—before their children qualify. Recently, changes in this program have made the process move along more rapidly to ensure that those who need services get them instead of having to wait for them. We were especially fortunate that Alex’s waiver application moved along at lightning speed, thanks to a caring and persistent caseworker who helped us with the process, my ability to organize paperwork efficiently, and the grace of God who saw our needs. When he was approved for the waiver within only three months of applying, we felt as though we had won the lottery because this approval essentially means that he is eligible to receive thousands of dollars of support each year of his life. Although we have always somehow managed to provide the therapies Alex needed through our own financial means, we were pleased to receive assistance and relieved to know that he will be taken care of when we’re gone.

Part of the process of obtaining the waiver is learning the alphabet soup of acronyms associated with the program: CIH, DD, ICF/IID, LOCA, etc. Although these abbreviations are probably intended to make referring to their concepts easier, they seem to create a wall between those who know them and those who don’t. During our quarterly meetings with Alex’s team, Ed has noted that he’s glad I understand the lingo, which make me feel as though I’ve mastered some sort of secret handshake. For instance, Alex receives funding from the Community Integration and Habilitation Waiver, more commonly known as CIH. The intention of this program is to keep people out of institutions and in their homes or residential placements within the community, such as group homes. This program was formerly known as the DD Waiver, or the Developmental Disabilities Waiver, but most autism parents knew it better as the Autism Waiver. The CIH is a type of ICF/IID Waiver, or Intermediate Care Facility for Individuals with Intellectual Disabilities; another is the FSW, or the Family Supports Waiver. An intellectual disability is defined as one that begins before age 22, is expected to continue indefinitely, impairs intellectual functioning and at least three of six additional areas: self-care, language, learning, mobility, self-direction, and independent living. To determine services needed, the LOCA, or Level of Care Assessment evaluates how much assistance the person needs with daily living skills. To qualify for the ICF/IID, the LOCA must determine that the person needs 24-hour supervision, as Alex does. To summarize, Alex receives the CIH Waiver, formerly known as the DD Waiver, a type of the ICF/IID Waiver, because his LOCA showed he needs constant supervision due to his autism. Of course, autism parents are used to all these lettered programs after years spent working with SLP, OT, PT, SI, ABA, IEP, and ACR for our kids with ASD. Frankly, it’s a wonder our kids ever learn language when they grow up hearing all the special needs jargon around them.

Aside from all the abbreviations and regulations, the waiver program is intended, like special education, to provide needed services to help the person overcome obstacles the disability brings. Just as the special education concept of “least restrictive environment” works to integrate special needs students in classrooms with typical students, the waiver is intended to integrate people with intellectual disabilities in the community by providing them with support to help them be as independent as possible. In special education, the annual case review (ACR) brings together those providing services for the child to assess progress and needs to determine what services should be provided, and the annual waiver meeting functions in the same way. For Alex, this means our family meets with his case manager who oversees his services, prepares his annual state budget for those services, and acts as an advocate, along with his behavioral therapist, music therapist, and a representative from the company that provides respite care. As in a special education annual meeting, basically everyone in the waiver meeting has an opportunity to make comments as the case manager takes notes and prepares the paperwork to guide service plans for the upcoming year, which requires several signatures of the participants. Even though the meeting took over an hour and required him to sign several electronic documents, Alex was remarkably patient and pleasant the entire time, which shows the progress he has made. In past quarterly meetings, he has complained of being tired or looked for ways to escape, claiming he needed to get something to drink or use the bathroom. Other than checking his watch from time to time, Alex seemed unfazed by having to sit through the meeting, and we were proud of how well he handled himself.

Besides being quite pleased with Alex’s progress, as evidenced by his behavior during the meeting and as reported by his therapists, we were reminded how fortunate we are to have found excellent professionals to work with him who genuinely care about him. The warmth of their interaction and their positive comments about Alex made us grateful that we have the support we need to help him develop the skills he needs in life. For years, we searched for the right people to work with him and often found no one who was willing or able to work with a child diagnosed with autism. Now we have a wonderful team who brings out the best in Alex and supports us as we guide him to develop his skills toward greater independence. After the struggles we have encountered in dealing with the obstacles autism has presented, we finally have professionals who know how to help, which comes as a great relief and a tremendous blessing. Knowing that God’s hand has led these people to us, we believe that He will continue to oversee Alex’s progress as he moves forward to fulfill God’s plans for his life, reassuring us that, in the end, everything will be all right.

“For He has not ignored or belittled the suffering of the needy. He has not turned His back on them, but has listened to their cries for help.” Psalm 22:24

Sunday, May 11, 2014

Dear Alex



“Well, I’ve been afraid of changing ‘cause I’ve built my life around you. But time makes you bolder, even children get older, and I’m getting older, too.”—Stevie Nicks, “Landslide”

Dear Alex,

Twenty-three years ago, just before Mother’s Day, I found out that you would be coming into the world in the not-too-distant future. Well, I didn’t really know that it was you, but on an early spring morning, a home pregnancy test confirmed that my nearly lifelong dream to be a mom was coming true. In those months as you grew in my womb, I imagined the person you would be and thought of all the things I would teach you. In those blissfully naïve dreams, I never stopped to think that autism would be part of our lives.

In the early days, as you hit your developmental milestones on time, we reveled in your achievements and found those few quirks of yours amusing. Sure, you seemed more interested in books than toys, but we were certain that was because you were smarter than most kids your age. While I thought we would have to teach you to love books, you seemed to have inherited that interest from us as you preferred to pull our books off the shelves, studying them intently, to looking at your own picture books. Nonetheless, you sat patiently and happily as I read you Dr. Seuss and Little Golden Books and children’s poetry and fairy tales. Soon we were to discover that we didn’t need to teach you the written words because you had already figured out how to decipher them yourself, an amazing feat for a three-year-old. Once again, you had proven to us how clever you were, and we were pleased that you had discovered the joy of reading.

While you didn’t say much, you always seemed to be observing the world and taking in every small detail. After we were told you had autism, we had an explanation for some of the things you did and didn’t do, such as getting upset when the vacuum cleaner was turned on or why you didn’t point to things, but that label didn’t really change who you were, an easygoing obedient child. Basically, you were the happiest kid I had ever met in my life, and we were going to do everything we could to make sure you stayed that way.

When we decided to home school you, we wanted to provide you with an education that would help you succeed, and we thought that teaching you one-on-one was the best way to do that. Also, we wanted to protect you from teachers who wouldn’t try to understand you and from kids who would be mean to you. What we didn’t realize was how much you would teach us. While we taught you the traditional studies of math, science, social studies, and English, we also shared our interests in music, cooking, and sports, hoping to make you well-rounded. Most importantly, we wanted you to learn faith and kindness, and you took to these lessons well, making us proud. Despite frustrations that your fine motor delays made things “too hard for little hands,” as you’d tell us, you kept plugging away. Even though I like to think you inherited that tenacity from me, I’ve come to realize that you possess even greater determination, and that inspires me to keep going when I think I cannot.

Because you’ve shared your interests and the research you’ve gathered from books and the internet, I’ve learned about the stock market, NASCAR, astronomy, meteorology, and pi, none of which I would have cared much about, had it not been for the enthusiasm you have conveyed. When you talk about these beloved topics, your eyes light up, your face breaks into a smile that reveals those irresistible dimples, and you draw us into the sheer delight you feel. Sometimes you can barely contain your enthusiasm, and you don’t just walk away after the conversation; you “happy hop” away, a combination of skipping and galloping that shows that you’re still that happy little boy inside a young man’s body.

When you and I walk together in public places, I’m reminded that you are fully grown as you tower over me, but sometimes you slip into little boy mode as you reach for my hand. I’m never sure whether this is because you need reassurance that I’m there for you or that you are reassuring me that you are there for me. One of the good things about the way our life has gone is that you don’t seem to mind that you have led a sheltered life because you have needed protection from the world. You’ve never wasted time worrying about other people’s opinions of you, and your life has been more content for that. However, nothing makes us prouder than when people tell us that you have nice manners or are so sweet or have a great laugh or are very smart. Even though we know all these things, we always appreciate when someone else notices and tells us. You, on the other hand, just go on your merry way, not caring what anyone thinks of you.

Now that you are a young adult, we hope that we have taught you most of the things you will need in life, but we realize that we must help you to become more independent. While it’s easier for us to do things for you, we want you to be able to do things on your own. If we stand back and let you struggle, know that we believe you can do it yourself, and we’ll be right behind you cheering you on and lending a hand when you need it. As I have been your teacher, you have been mine, too—in fact, you have been the greatest teacher in my life. You have helped me develop my weakest quality—patience, taught me the value of hope, strengthened my faith, and made me love more deeply than I thought was possible. From the challenges that tested me and your childlike trust and innocence, I have become better, stronger, and happier, thanks to you. What mother could ask any more of her child? Thank you, my precious boy, for the gift you truly are.

Love always,

Mommy

“Yes, You have been with me from birth; from my mother’s womb You have cared for me. No wonder I am always praising You!” Psalm 71:6

Sunday, May 4, 2014

May Days


Poet T.S. Eliot once wrote, “April is the cruellest [sic] month,” but I’d have to go with May instead. For teachers like me, the last month of school involves giving standardized tests and trying madly to finish teaching curriculum to students whose minds have understandably drifted to imminent summer vacation. With the stress of trying to accomplish too much in not enough time, colleagues become annoyed with those who don’t pull their share, don’t follow the rules, and don’t seem to care. Knowing that Alex is very attuned to my emotions, I try to keep any frustrations from work hidden from him, but I suspect that he senses my agitation at times. Also, every spring he seems to be a bit off, probably due to pollen in the air and atmospheric changes that occur in late spring. Needless to say, May brings challenges to both of us.

This week, the first of the month of May, Alex has been a little off. Although he doesn’t complain of any physical symptoms or show any signs of illness, he has been somewhat lethargic, preferring reclining to recreation. Usually when I offer to take him grocery shopping with me, he leaps up, ready to go because he likes going to the store. However, this week when I have suggested that we go shopping, he has suggested instead, “Daddy can go.” While I’d like to think that Alex is concerned about my doing too much and trying to shift some responsibility to Ed, I think he just prefers to stay home this week.  If, indeed, pollen is an issue, he is showing wisdom to stay indoors to avoid exposure to things in the air that bother him.

Despite not being one hundred percent, he had terrific sessions with his therapists this week. On Tuesday, his behavioral therapist heartily praised his work, saying he had a “wonderful” session, and on Thursday, his music therapist also told me that he had done very well. Nonetheless, Alex didn’t want to go anyplace this week and made excuses for not going whenever suggestions were made about going places. Yet, he seemed to be in a fairly good mood most of the time and revealed progress in unusual ways. One day, he kiddingly told Ed something implausible, and when Ed asked him if he was joking, Alex responded, “No, that’s hyperbole!” (This is what happens to children of English teachers; they use a literary term for exaggeration.) This week he also suddenly mastered using the toilet standing up instead of sitting, as he has insisted upon for all these years, and he seemed quite proud of himself for this accomplishment. Since he has been doing so well in various areas lately, we didn’t give his reluctance to go places much thought.

On Friday, we were to meet his behavioral therapist at Target, one of his favorite places to shop. After a quick lunch at the Target Café, we planned to walk around the store so that he could shop and practice his social skills at the same time. These weekly outings have been quite helpful to his development of practical skills and applying what he has learned during therapy sessions. As we ate lunch, Alex didn’t seem as enthusiastic about eating as he usually is, and he didn’t seem as excited about shopping at Target as he normally is. Nonetheless, he half-heartedly went along with the plans. When we decided to look for birthday cards for his cousins, our plans were deterred a bit because we found a woman had parked her shopping cart in the middle of the aisle and seemed oblivious that she was needlessly blocking the path. When Alex’s therapist sweetly said, “Excuse me,” the woman glared and barely moved her cart. As I could feel my annoyance rising, I fought my desire to tell her that she could benefit from learning some of the social skills my kid with autism practiced. Whether Alex picked up on my irritation or felt his own with the rude woman, he began to set his jaw in a way that I recognized as a signal he had had enough.

As I asked him what was wrong and tried to remove him from the aisle quickly, he told me that he was tired of waiting and flung his hand toward me. Putting to use my limited tae kwon do skills, I blocked his hand so that he didn’t make contact with me. Unfortunately, I didn’t grab his other hand in time, and he scratched his therapist in a rapid movement of frustration. Taking him by the arm, I quickly found a place where he could sit and calm down, and he cooperated with his therapist and me by following our directions. Fortunately, he de-escalated very quickly and apologized; unfortunately, his unacceptable behavior would have to be reported for his files. For all the weeks his behavior has been excellent, I knew that one moment would sadly mar his record of good behavior. As Ed noted in an analogy to the game Chutes and Ladders, for all the ladders Alex has been climbing with good choices and good progress, he had fallen down a chute in one moment of upset. Whether it was pollen, picking up on my work stress, or the annoyance with a rude shopper, Alex reacted in a socially unacceptable manner for one moment.

Thankfully, his therapist reacted with understanding and compassion, and she focused upon the positive aspects of Alex’s compliance immediately after the incident and his ability to calm down quickly. Having dealt with much longer and much more aggressive meltdowns with Alex in the past, I knew that this showed how far he has come. Also, his therapist noted that his behavior not only revealed progress in dealing with issues but also the clear need for continued therapy so that Alex doesn’t react in negative ways when he becomes overwhelmed. While he and I both felt bad about what had happened, she assured us that she was fine and that she understood he is still learning how to cope in a variety of situations.

Last night, Alex suddenly said to me, “I was worried.” Because he rarely initiates discussions about his feelings, I was surprised by this out-of-the-blue admission. Moreover, his issues with language make expressing himself rather difficult, especially when he is upset or when he is talking about abstract ideas. Although I wanted to press him to find out what was bothering him, I somehow sensed that he had told me all he could, and I respected his confession on its face value. As I tried to reassure him and explain that he needed to use his words to tell us when he is worried instead of using his hands, he seemed to understand. Maybe he’s ready to climb some more ladders this week; I hope so.

“Give all your worries and cares to God, for He cares about you.” I Peter 5:7