2018: Year in Review

“Five hundred twenty-five thousand six hundred minutes. How do you measure, measure a year?” from “Seasons of Love” by Jonathan Larson

Since this is the last blog entry of 2018, I thought a review of our highlights from this year would be appropriate as a good way to measure Alex’s progress. Tomorrow evening, he will eagerly await the ball drop in Times Square in New York City, and he will count down along with Ryan Seacrest as he watches the televised event. In that spirit, I will also count down from ten.

10. We began the new year with a new case manager to oversee Alex’s disability budget and coordinate his support services. Although we were sorry to see his former case manager go because she was sweet, energetic, and efficient, his new case manager is kind, conscientious, and experienced. One of her main tasks has been collecting information for the new person-centered individualized support plan required by the state of Indiana. By asking numerous questions, she was able to construct a comprehensive multi-page document that accurately reflects Alex’s strengths, interests, and needs. However, I’m betting that after all that work, the only people who will read that document are his case manager and me.

9. Because Alex has poor fine motor skills as well as impaired gross motor planning skills, he has a great deal of trouble putting on his shoes and cannot tie shoe laces. This year’s discovery of Skechers men’s shoes with elastic bungee laces, allowing Alex to simply slip on these comfortable shoes, has made my life easier. Thank you, Skechers!

8. Due to a change in company policy, Alex’s music therapist informed us recently that he would have to do music sessions in his office instead of in our home. While he had many concerns about making this change, I felt reasonably confident that Alex would adapt. Thankfully, Alex proved me right and has done quite well so far in making the transition to the new setting. Of course, the warm welcome the office staff provides Alex each week probably helps, too.

7. Last year, Alex’s behavioral therapist was promoted to supervisor, and her additional responsibilities meant cutting back from two sessions to one each week with her. The second weekly session focused on going out in the community and practicing social skills they had worked on earlier in the week. This year, she decided Alex has made such good progress that she could spend less time working on skills with him and add the community component back into his sessions. Consequently, she now spends half of the session working on skills, and for the other half, we take Alex out in the community again. Alex was pleased with this change, and the sweet ladies who work at Burger King and treat him like a king seemed delighted to see him again.

6. After reading research from Dr. Chris Exley regarding aluminum toxicity links to autism and Alzheimer’s disease, I decided to follow his suggestions about chelating aluminum. Every day, Alex now drinks bottled Fiji water, which contains the mineral silica that bonds with aluminum and removes it from the body. Hopefully, continuing to drink the Fiji water will lessen or even eliminate any aluminum lurking in Alex’s brain, where it can do damage.

5.  One of the most valuable lessons Alex’s behavioral therapist has taught him this year is being assertive but polite. Often, when posed with a choice, Alex seems indecisive and will ask, “What would be good?” She has helped him learn to weigh his options and tell what he wants or needs while using good manners. He has done much better about expressing himself, and sometimes to make sure he’s covered all of his bases, he’ll tell us what he wants immediately followed by all three of the polite indicators: “Please, thank you, and you’re welcome.”

4.  This year, we have been able to reduce more of the medications Alex takes to manage anxiety. Since he has learned ways to deal with anxiety cognitively through behavioral therapy, he relies less on medication. With the guidance of his psychiatric nurse practitioner, we have been able to reduce dosages of nearly all of the medications he takes and are hopeful we can eliminate some of them soon. His behavioral therapist has told us that medication reduction is rare in autism, so we are delighted that this is a sign he is doing remarkably well.

3.  After 2017 found us constantly battling with yeast overgrowth in Alex’s digestive system, his doctor wisely decided to continue weekly doses of the anti-fungal Diflucan for several months this year to wipe out the dreaded thrush. This aggressive treatment did the trick, as we thankfully saw no signs of thrush this year. In fact, this year, Alex has probably been the healthiest he has ever been, with no colds, infections, or any illness.

2.  While we started the year with Alex having some increased sensory issues and anxiety about going places, especially in cold weather or in noisy settings, he thankfully overcame these concerns. In fact, he enjoyed going to several concerts this summer and to many basketball games this fall with no signs of crowds or loud noises bothering him. In addition, he looks forward to going grocery shopping every week at the new local superstore that opened this summer, where he does a better job of pushing the cart and staying out of other people’s way than any other customers do.

1.  Although we have been dealing with Alex’s aversion to food for about a year and a half following an especially bad case of thrush, he seems to be on the right track to regaining his appetite. After a year of his self-limited diet, we took him to a terrific speech therapist who reassured us that nothing was physically wrong. She believed that thrush had made eating painful and food taste bad, so we had to work with Alex on overcoming those negative thoughts. Her warmth and kindness inspired him to try a variety of foods. Still, progress has been slow; however, the past week, we have seen a real breakthrough as Alex has shown signs of returning to his formerly varied and healthy appetite. As we begin a new year, we pray that he continues to make progress so that he can enjoy eating again.

Looking back over all the accomplishments Alex has made in 2018 makes us hopeful for the progress he will continue to make in 2019. Most of all, we are thankful for the blessings God has provided this year and will continue to provide so that Alex will, indeed, reach his full potential.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness, I will create rivers in the dry wasteland.” Isaiah 43:19

Three Cubed

“December 16, 1991.” Over the past twenty-seven years, I have mindlessly rattled off that date countless times in doctor’s offices and pharmacies as well as over the phone to insurance companies and special services providers. In true Jeopardy format, I could tell the significance of this date in the form of a question: “What is Alex’s birthdate?” However, the judges would also have to accept the following as correct: “What is the date I became a mom?” or “When was the most fascinating person I’ve ever met born?” or “What is the day my life forever changed for the better?” Certainly, becoming Alex’s mom has allowed me to experience life in ways I could have never expected, and for that, I will be forever grateful to God and to Alex.

If it were not for Alex, I would not appreciate the wonder of numbers. As someone who has always loved words, mathematics held no particular interest for me. However, for Alex, numbers allow him to make sense of the world: how big, how far, how tall, how expensive, how hot, how many, how long. He treasures measuring devices that give him the answers and perspectives he seeks, such as clocks, calendars, and rulers. He notices and happily announces patterns that others might miss, including when the temperature is the same as the number of minutes on the clock, when the gas prices are the same as pi, and that our phone number is a prime number. Indeed, even Alex’s new age––twenty-seven––becomes more interesting because it is a perfect cube (3 times 3 times 3). Because Alex has shared his love of numbers with me, I have realized that despite the infinite possibilities and seeming randomness of life, patterns and plans are waiting to be discovered. We only need to keep looking for them with enthusiasm, as Alex does every hour of every day.

If it were not for Alex, I wouldn’t have realized the depths of goodness in the man I married. Having the opportunity to witness the caring and patience and unconditional love Ed has developed since becoming Alex’s dad has been a gift. Since Alex usually sits between the two of us when we take him to concerts and sporting events, I often see Alex lean toward his dad in these situations to ask him a question or make a comment. With their two heads literally and figuratively together, they share a bond most father and sons would envy. The other evening, I heard Bob Dylan Christmas music coming from the basement and walked downstairs to find the two of them having a grand time, enjoying the music they love and I don’t. While being an autism dad has been challenging, Ed has stepped up and been the father Alex needed. In return, he has been rewarded with Alex’s devotion to him.

If it were not for Alex, I wouldn’t know how precious the last few minutes before falling asleep are. After we say bedtime prayers together, in which Alex asks God to bless practically everyone he’s ever met, not to delay going to sleep, but because these people have made an impression upon him, we engage in a nightly routine that is familiar and comforting. We discuss his schedule for the next day and say, “Love you” to each other. Because Alex has sensory issues that make physical affection difficult for him, the verbalizing of our love takes on greater value. Nonetheless, over time, he has become more tolerant of touch, smiling as he lifts his head off his pillow for me to kiss his forehead or cheek. I really don’t think Alex needs a bedtime kiss from me to know he’s loved, but I think he offers his sweet face to me because he knows how much it means to me.

If it were not for Alex, my faith in God would not be as strong. Not only has autism tested and developed my faith, but also being able to witness Alex’s complete trust and faith in God has provided a model of how I need to believe. When Alex was struggling mightily with anxiety, I would kneel beside his bed as he slept, praying earnestly for God to help him and comfort him in ways that I could not. When Alex is doing well and content with life, as he has been lately, I offer prayers throughout the day, thanking God for how far He has brought Alex. Despite wanting to control every aspect of Alex’s life, I have learned that God’s ways are far better than mine, and I have learned to trust and wait upon God instead of leaning on my own understanding.

Although I don’t know what the future holds for Alex and honestly worry about how autism may make his life more difficult than necessary, I do know that God has plans for him He hasn’t shared with me, probably knowing I would want to tweak them myself. Nonetheless, He has entrusted this precious child to me, and I have tried to teach him the important lessons in life. Twenty-seven years later, I burst with pride at the fine young man Alex has become and thank God for the best student and teacher I’ve ever had, as well as the most precious gift God has ever given me.

“Teach us to number our days, that we may gain a heart of wisdom.” Psalm 90:12

Joy Overflowing

“Happiness depends on circumstances; joy depends on God.” ~ Reverend Billy Graham

Despite the ways autism impairs Alex’s language and social skills, he is intent upon sharing the things that bring him joy. Galloping through the house with his lanky six-foot-tall frame, he seeks us out several times a day to tell us about something he finds delightful. As he happily relates something he’s seen or heard that he finds interesting, amusing, or exciting, we are pleased that he wants to include us. With his contagious enthusiasm, we can’t help but share in his overflowing joy, even in seemingly simple matters.

For example, Alex’s interest in numbers and mathematical concepts has led him to an interest in the economy. He closely follows the stock market and gets excited when stocks are doing well. Not just content that the markets are doing well, he also wants to know why the economy is thriving. Knowing that certain events will lead to a good day on the stock market, he will ask Ed, “What’s the good news?” While an up day on the stock market makes Alex happy, knowing the reasons why makes him even happier.

Similarly, Alex finds watching oil prices interesting, and he knows that oil prices will influence gasoline prices. Even though Alex doesn’t own a car, buy gasoline, or even drive, he still keeps a close watch on gas prices. Besides comparing gas prices on the Gas Buddy website and at various gas stations as we drive around town, he has recently discovered a new favorite website, Fuelcaster, that predicts future gas prices. Lately, he’s been happily announcing to us after checking Fuelcaster, “Gas prices are going down tomorrow!” Fortunately, this information comes in quite handy so that we can plan our trips to the gas station and save a few cents per gallon.

Besides following economic trends, Alex additionally takes great pleasure in watching game shows on television. Along with learning trivia and how much common items cost, he has also learned to be genuinely happy for people he has never met. Often, he will come running to tell us that someone won a car on Wheel of Fortune or The Price Is Right, and he’s thrilled that they have won a grand prize. Recently, he’s been watching reruns of Supermarket Sweep, and he likes when the contestants earn extra time so that their chances of winning the final round are better. Nearly every day, he will energetically tell us, “Someone got three minutes!” He is also pleased when contestants win large sums of money on Jeopardy. People on game shows have no idea that they have such a strong cheerleader in Alex.

Aside from watching business shows and game shows, Alex also takes pleasure from listening to voices and music. He’s especially fascinated by little kids’ voices, and he will eagerly tell us that he heard someone with “a young voice.” He also likes listening to singers with raspy voices, especially Bob Dylan—I blame his father for that. If he hears someone singing with a gravelly voice, he will come running to ask us, “Is that Bob Dylan?” Even if it’s not Bob, Alex is still delighted to listen to a similar vocal style. Even more entertaining to watch is when Alex recognizes a song he likes. As a smile crosses his face, he will eagerly proclaim the song as his “favorite song.” Apparently, he has about two dozen favorite songs, according to what he has told us, but clearly these special songs fill him with joy. I especially like watching him listen to the live version of Garth Brooks’ “Friends in Low Places.” I’m not sure whether Alex likes this particular rendition because it’s not played as often as the regular CD version or because he finds the telling off of the “little lady” quite amusing. Nonetheless, he always grins when he hears it.

While Alex appreciates the daily joys in life, he also greatly values things that happen infrequently. He delights in those events that he deems “rare” and “special,” such as holidays or world records. He will announce these occurrences with a proper amount of awe: “It’s rare for a basketball team to score one hundred points!” or “It’s rare for the temperature to be minus digits!” or “It’s rare for Daddy to talk on the phone!” Even more entertaining to watch is when Alex proclaims in an animated way that something is “extremely rare.” For example, “It’s extremely rare for old ladies NOT to have old lady voices!” Even in the seemingly mundane, Alex finds something novel that makes him happy.

Even though autism has placed obstacles on Alex’s life, God has blessed him with an ease in finding joy in everyday experiences. As we approach the celebration of Thanksgiving later this week, I’m grateful for the lessons Alex has taught me. First, listen for the delightful lilt of a child’s voice or the familiar first notes of a favorite tune. Then, feel happy for economic upturns or someone else’s good fortune. Finally, look for the rare and special things in life, including those people like Alex who find joy in simple things and unexpected places and who share these blessings so that we, too, feel joy.

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit.” Romans 15:13

Peaceful Plateau

Lately, we’ve found ourselves in one of those phases for which we’ve prayed fervently: the peaceful plateau, where life is rolling along blissfully and smoothly. Times like this occasionally make me wonder whether we should try something new to push toward more progress. However, most of the time, we think of this phase of relative ease as a Jenga tower in which we don’t want to make any sudden moves that might topple a potentially precarious stack of blocks.

During these times when Alex is healthy and content, Ed and I compare notes in hushed tones, somehow fearful that saying aloud how well Alex is doing might disturb the delicate balance. We add to our superstition by adding the comment, “Knock on wood!” as we both seek a table or chair to rap our knuckles upon, hoping to ensure our good luck will continue.

Certainly, we have reason to be leery. For a year, Alex took antifungal medication to battle an unusually virulent case of thrush that invaded his mouth and throat and did not want to leave. When he finished taking Diflucan in June, we hoped and prayed that the thrush had been eradicated, but we continued to look for the symptoms: tiny blisters on the inside of his lower lip, a white coating on his tongue, and difficulty swallowing his morning pills. Thankfully, Alex has remained thrush-free for the past few months, and we have breathed a sigh of relief that he has been healthy. Knock on wood.

Although we have been working for over a year with Alex’s psychiatric nurse practitioner to reduce the medications he takes for anxiety, every time we reduce or remove a medication, we worry about how he will respond. Since August, two of his medication doses have been cut in half, and he has done remarkably well. Fortunately, with each medication reduction, we have seen Alex respond favorably, improving instead of regressing. Knock on wood.

After over a year of dealing with Alex’s food aversion that changed him from a hearty and healthy eater to a reluctant and picky eater, we enlisted the help of a speech therapist this summer. In just a few sessions, he made great gains and expanded his diet to include a wider variety, rediscovering the foods he formerly enjoyed. While we were delighted with his progress, we were a bit apprehensive when his speech therapist told us that Alex had made a breakthrough and no longer needed her help. However, he continues to look forward to mealtime and makes suggestions about what he’d like to eat. He’s even been able to eat at restaurants, despite all the sensory issues of sound, smell, and taste, while showing no anxiety about food. Knock on wood.

As part of behavioral therapy, his therapist has worked on Alex’s social and language skills by teaching him how to say hello and goodbye to people. One would think this would be a simple task, but autism makes this interaction difficult for him. To reinforce these skills, Ed and I often cue Alex to remind him to exchange these social niceties when he’s out in public. Sometimes, we directly tell him, “Say hello,” or we physically nudge him to speak to others because he doesn’t usually initiate greetings on his own. The other evening when we went grocery shopping, the gentleman who often greets us at the door was treated to an enthusiastic, “Hello!” from Alex. Ed and I exchanged surprised looks, wondering if the other had cued Alex, but he had done it on his own. To prove it wasn’t a fluke, he said, “Goodbye!” to the same gentleman as we were leaving. Maybe Alex is finally catching on to the social skills we’ve worked so hard to teach him. Knock on wood.

Since Alex’s quarterly meeting with his support team is coming up this week, I have been thinking about how to summarize the past three months, something we routinely do at every meeting. He’s healthy, sleeping and eating well, and willing to go places and interact with others. More importantly, he just seems content. We catch him skipping through the house, grinning in the back seat as he rides in the car, and generally amused as he observes life. In short, he’s happy and healthy. Knock on wood.

When we’re in the midst of difficulty, I find myself searching for God’s goodness and praying earnestly for progress. However, when things are going well, I vacillate between enjoying the comfort of ease and fretting when the next proverbial shoe might drop. However, we know that faith is greater than any silly superstition. Moreover, we know that God is in control, and we are truly thankful for His goodness in our lives. He has been with us every step of this journey and has plans for Alex’s life that are greater than we can imagine.

Alex is healthy. Praise God.

Alex is getting off medications. Praise God.

Alex is eating better. Praise God.

Alex is getting out and interacting with people. Praise God.

Alex is happy. Praise God.

Life is good. God is good. Praise God, indeed!

“Come let us tell of the Lord’s greatness; let us exalt His name together.” Psalm 34:3

Seeking Small Miracles

“Why, who makes much of a miracle? As to me I know of nothing else but miracles…”~ Walt Whitman

For over a year, we have been trying to help Alex regain his healthy and hearty appetite. Although many people with autism have issues with eating, we were blessed with a child who would happily devour nearly any food placed before him. After a nasty bout of thrush last summer made Alex’s mouth and throat sore and made food taste bad, he has had difficulty overcoming the loss of appetite, even months after medications eradicated the thrush.

For more than a year, his self-imposed diet consists almost exclusively of cool and smooth foods: applesauce, dairy-free yogurt, a few fruits, lemon pudding, Jello, and smoothies. We have tried various approaches to increase both the variety and volume of what Alex eats on a daily basis. However, we must always be careful that our encouragement to eat doesn’t become pressure to perform that may trigger anxiety.

After months of prayer and gently persuading Alex to try different foods, we decided to take him to a speech therapist his primary care doctor had recommended for food aversion. Immediately impressed by her understanding of why Alex’s appetite suddenly changed as well as by her warmth and kindness toward Alex and us, we felt hopeful that she could help him. Moreover, we were relieved to discover nothing was physically wrong with Alex’s ability to eat; he simply has sensory issues and anxiety about eating.

Last week, I found an excellent article on the Child Mind Institute website that explains food aversion clearly and offers helpful tips. [To read this article, please click here.] In “More Than Picky Eating,” Rachel Ehmke notes, “Kids with a serious aversion to many foods may need help with food habits and overcoming avoidance.” She goes on to say, “Their aversion goes beyond normal choosiness and into an area where parents find they need to call for backup.” Clearly, this reinforced our decision to seek the expertise of a speech therapist regarding Alex’s new aversion to food.

In the article, she explains potential reasons why children limit their diets, namely, anxiety issues and/or heightened senses of smell and taste. Specifically, she describes fears of trying new things, worries about choking, and issues with textures. With Alex, he seems to be more driven by sensory issues––taste, texture, and temperature. However, he also seems to have anxiety about the act of eating, and he is trying to deal with his fears by reading medical books. For him, knowledge is power. Of course, we have tried to reassure him, as well.

The article goes on to explain using exposure therapy, working with foods that have been avoided “in a carefully controlled, therapeutic way.” Children are encouraged to try new foods and rate them, eating foods that don’t make them gag, and allowing them time to get used to the taste of new foods through repeated exposure to them. The results of this approach, which usually takes 8-10 sessions, are encouraging: “…with treatment, picky eaters can make great strides.”

Although we have only met with Alex’s speech therapist three times, we have seen her use a similar approach with him. After noting the foods that he will eat, she has offered suggestions about foods he can try at home that are similar to the ones he is currently eating. For example, since he likes applesauce, she suggested that he try different flavors of applesauce, and he discovered that he also likes cinnamon-flavored and strawberry-flavored applesauce. This way, he is expanding his palate to accept new flavors with familiar textures and temperatures. In addition, since he likes orange juice, she recommended that he try Mandarin oranges, which have a similar flavor to his favorite beverage but a different texture. In his most recent session, she asked him to try warm apple pie filling, which is similar to applesauce in taste but offers a different texture and temperature.

Thankfully, Alex has been willing to follow her suggestions, and we have been able to expand his limited menu with some new fruits. However, he has definite ideas about things he refuses to eat, even angrily telling us in his last session that he didn’t want to eat the Honey Nut Cheerios we’d offered him. Despite Alex’s rare yelling outburst, his therapist assured us that she loves working with him and considers our family “a blessing” to her. Moreover, she reassured Alex by telling him most crunchy foods aren’t that nutritious anyway, so he doesn’t have to eat them. If we had any doubts, God was reminding us what a blessing he’d given us in Alex’s speech therapist.

In the month since beginning food aversion therapy, the progress has been slow, but we are grateful that Alex has been willing to try new foods. The other day, however, we were surprised when out of the blue, Alex requested chili dogs for dinner. Neither cold nor smooth, they didn’t fit his preferred diet, and the spiciness of the chili seemed out of the ordinary for him. Since Alex had not given me advance notice, I had to improvise and make him a hot dog with leftover taco meat. To my surprise he ate every bit and enjoyed it thoroughly.

Not wanting to get my hopes up, I dismissed this chili dog incident as a fluke. The next day, he again asked for chili dogs. Had my faith been stronger, I would have made chili in preparation for this new food request. Instead, I could only offer taco meat dogs on the spur of the moment. Again, Alex ate this second-rate chili dog happily. Still not quite believing this small miracle God had given, I was taken aback when Alex again asked for a chili dog the next day yet seemed satisfied with the substitute taco dog. Every day, I thanked God for this breakthrough and prayed that this was a sign we were making headway on Alex overcoming his food aversion.

Yesterday, I decided to test how strong Alex’s breakthrough was by suggesting that we take him to a hot dog stand and get him a real chili dog. Since we had not been to this restaurant in over a year, Alex was eager to go because it was “special.” After ordering his hot dog with no bun and chili on the side, I had doubts that he would eat the chili dog, especially away from home. However, God provided another small miracle as Alex devoured the chili dog and proclaimed he liked it “one hundred percent.” For most people, this simple act would be rather meaningless; for us, it was an answer to many daily prayers.

Even though we don’t know how long before or even if Alex will totally regain his varied appetite, we are encouraged by the amazing progress we have witnessed this week. God has provided us with a therapist who understands Alex’s needs and has offered us support and a good plan to help him overcome his food aversion. As we continue to seek daily blessings and pray for breakthroughs, we are grateful for all the progress Alex has made over the years. For today, Alex has requested chili and a baked potato from Wendy’s fast food restaurant for dinner. In the words of poet Walt Whitman, “What stranger miracles are there?”

“He does great things too marvelous to understand. He performs countless miracles.” Job 5:9

Traveling Through the Dark

“Traveling through the dark, I found a deer…” William Stafford

Last Monday night, as Ed was coming home from taking sunset pictures at the Indiana Dunes, a deer suddenly ran in front of him on the dark highway. True to the saying, “like a deer caught in headlights,” the deer stopped in front of his car instead of continuing to run across the road. Fortunately, Ed was able to slow down enough that he didn’t hit the deer at fifty miles per hour. After doing some damage to the plastic pieces on the front of the car, the deer continued running on its way across the highway and into the woods.

Knowing that his encounter with the deer could have been much worse, Ed felt a brief sense of relief that was short-lived. Another car behind him apparently did not see his car stopped by the deer in time and rammed into the back of Ed’s car. Thankfully, neither Ed nor the other driver was hurt at all, but Ed’s car suffered more damage from the second hit. Using the cell phone I bought for him, despite his dislike of using the phone, keep charged for him, and insist that he carry just for circumstances like this, he called the police to file an accident report.

The police officers, like everyone we have dealt with in the aftermath of this accident, were exceptionally kind and helpful. When Ed came home in his drivable but damaged car and told me he’d been in an accident, my only concern was whether he had been hurt. After watching many medical shows over the years, I knew what questions to ask about potential symptoms of head injuries and whiplash and asked repeatedly if he should go to the emergency room to be checked. After reassuring me that he had come through the accident without a scratch, I thanked God for watching over him and keeping him safe.

The next day while Ed was at work, I handled phone calls from our insurance and the other driver’s insurance, taking careful notes so that I could relay the information to Ed. In addition, I spoke with the company that will provide a rental car while ours is being fixed as well as the body shop that will repair the car. Everyone I talked to was helpful and kind, beginning each conversation by showing concern, asking if Ed had been hurt in the accident. Once I told them that he was fine, they commented that as long as he was all right, nothing else mattered. I totally agreed with their assessment of priorities.

The following evening at dinner, I noticed a mark on Ed’s neck and immediately thought the seat belt from his car had either bruised or scraped him. After accusing him of minimizing an injury, Ed insisted that his neck was fine and went to the bathroom mirror to see where I was pointing. Apparently, my medical skills gained from television shows were lacking, as the “injury” I found was only a bit of chocolate from candy he’d been eating.

Not wanting to worry Alex, we have tried to keep our discussions about the accident minimal in front of him, but his acute hearing and fondness for eavesdropping made secrecy impossible. Not to mention, he overheard the assorted phone calls from the insurance companies in which we had to explain what had happened. As we told him about his dad’s car accident, Alex seemed to take the information seriously but calmly, especially since we reassured him that his dad was fine and that the car will be repaired.

With claims filed for insurance, estimates made of expenses, and parts being ordered to repair the car, now we just wait. After the initial flurry of concerns and details to be tended, Ed and I have viewed this experience in different ways. He’s frustrated that his car is damaged and will be in the shop for a week, but I’m thankful that he walked away from the accident totally uninjured. Moreover, I’ve reflected on how this accident is in some ways a metaphor for our life with autism. Like the deer, autism seemed to appear out of nowhere, impeding our path as we were traveling along through life. After facing autism head on, we have also encountered the second unexpected hit from behind in various ways: struggling to find professionals to help Alex, dealing with extreme anxiety and aggression, and working to heal his gastrointestinal issues. As if autism were not enough with its impact on language, motor, and social skills, the additional financial, mental health, and medical issues prove challenging to families like ours.

Nonetheless, just as the police officers and the employees of the insurance agencies, rental car company, and body shop have helped us in dealing with the aftermath of a car accident, therapists, doctors, researchers, and other parents have guided us in dealing with autism. While these experiences were new to us, others with more experience and expertise could help and guide us as to what we needed to do to move forward. Most importantly, we know that nothing comes as a surprise to God, who watches over us and guides us through every circumstance in life. While we don’t know what Alex’s future holds, we do know that God holds Alex’s future. Holding fast to our faith, we trust that God will guide us along paths we cannot see and help us move past obstacles, just as He always has, fulfilling the good plans He has promised.

“Thy word is a lamp unto my feet, and a light unto my path.” Psalm 119:105

Five Hundred

On June 13, 2010, I posted my first blog entry on One Autism Mom’s Notes. When I wrote that initial entry, Alex was eighteen years old and doing quite well after some trying teenage years. I thought we had come to a point in our lives where we could breathe easy and keep moving forward. With a little more free time on my hands, I decided to create a blog where I could write about Alex and how autism had impacted our family life. My hope was that by sharing our experiences and the things we had learned along the way, our stories might help other families dealing with autism. Moreover, I wanted to write a history for Alex so that he could see how far he has come in the years since his diagnosis with autism at age four.

Now nearly eight years later, this is the five hundredth blog post I’ve written. When I began writing about Alex, I had no idea that I would have enough to say for five hundred essays. Moreover, I had no idea that we still had struggles ahead of us, especially a terribly turbulent time in which anxiety overtook Alex and made him aggressive and wildly unpredictable. As parents we had to make our most difficult decision: to hospitalize him for several weeks in the behavioral medicine ward of a nearby hospital in the spring of 2012. However, this heart-wrenching time led us to professionals who could help Alex, and this was the beginning of new healing for him––truly a blessing in disguise.

Over the past 499 essays, I’ve shared the good, the bad, and the ugly as candidly as possible in hopes that other parents won’t feel alone in dealing with the obstacles their children face with autism. I’ve also passed along research and methods I’ve found interesting or helpful, just as I would pass along a great recipe for cookies. With each research study I read, in my optimistically Pollyanna way, I believe that I’m going to stumble onto something that will not only make Alex better, but also aid other children and adults dealing with autism. Consequently, I keep reading, researching, and writing about autism, waiting for a cure.

In thinking about this 500 milestone, I wanted to celebrate with five unexpected blessings that have occurred in writing this blog. First, I have been amazed to see my words go out into the world, where they––according to the Blogspot stats––have been read on six continents. (I’m guessing the folks in Antarctica have more important things to do, like keeping warm, instead of reading my blog, so I’m good with that.) When I was happily working at the “Be Creative” table as a third grader, wondering if anyone other than my teachers and my mom would ever read my writings, I never dreamed that people in countries I had to find on a map would read my work. I’m honored and awed by that.

Secondly, when I was a college student working on my undergraduate and graduate degrees in English, I had a keen interest in psychology and took as many elective psychology classes as I could fit in my schedule. I’m sure that was God’s plan because those courses have come in handy in dealing with and understanding a child whose brain works differently than most and whose development has followed a unique pattern. Moreover, the terminology I learned has proven useful in reading autism research. Imagine my surprise and delight in being contacted by a psychiatrist in Australia who wanted to use an excerpt from one of my blog entries as part of an online psychology textbook. Dr. Joseph Rey, the Head of Psychiatry at The University of Notre Dame School of Medicine in Sydney, requested my essay on Theory of Mind to be included in The IACAPAP Textbook of Child and Adolescent Mental Health published online in 2014. For this work, Dr. Rey received the 2014 International Association of Child and Adolescent Psychiatry and Allied Disciplines (IACAPAP) International Contribution Award. To have my writing published in such a distinguished textbook is an opportunity I never would have dreamed could happen.

Another awesome connection made because of the blog has been one with author Marjorie Ingall. In the summer of 2012, Marjorie contacted me after reading my blog and wanted to interview me for an article about autism she was writing for a magazine. Her warmth and humor made our phone conversations comfortable and pleasant, as though we were old friends. Those interviews became a feature article in the November 2012 issue of Woman’s Day magazine in which Marjorie told our family’s story skillfully and compassionately. In her own blog on October 19, 2012, Marjorie describes the connection we found as mothers during the interview process. Not only did I appreciate the kind words she offered about me, but her description of my blog also made me smile: “Her blog is full of evidence of her Christian faith––each post ends with a Biblical quote, and there’s a whole lotta Jesus going on...” Despite our differences in religious backgrounds––her Jewish faith and my Protestant faith––God knew we would appreciate each other and brought us together through the blog.

Besides getting to meet some very interesting and talented new people, including some wonderful autism parents, One Autism Mom’s Notes has helped me reconnect with old friends. My best friend from college with whom I’d lost touch over the years, emailed me after seeing an article about my blog in our college alumni magazine and introduced me to one of her closest friends, who is also an autism mom. Also, one of my good friends from junior high contacted me after reading the Woman’s Day article and the blog; she, too, is raising a child with autism. The demands of raising a child with autism makes maintaining friendships challenging; being able to get back in touch with old friends has truly been a blessing.

However, the greatest blessing of all has been seeing God’s promises fulfilled over the years as Alex has made progress. Through the challenges, trials, and uncertainties, God has been faithful to our family and brought us through it all. While our faith has been mightily tested at times, we always knew that God’s plans were better than our own, and we knew that He was looking out for Alex’s best interests. In those times that we wavered and wondered whether he heard our prayers, we only needed to listen to Alex’s earnest bedtime prayers, filled with childlike faith, to carry us through. As we celebrate Palm Sunday today and anticipate Easter, remembering the resurrection of Jesus Christ, we know that with God, nothing is impossible. Consequently, we continue to put our hope and trust in Him, knowing that He will always take care of us, just as He always has in the past. With that in mind, we know that Alex’s future will, indeed, be bright.

To those who have read my blog, written or said kind comments, and encouraged me, I truly appreciate your support. Special thanks go to my husband and my mom not only for reading every single one of the five hundred at least twice, proofreading carefully, but also for the constant source of unconditional love, strength, and faith you provide Alex and me. I thank God every day for the three of you and what blessings you are!

“So teach us to number our days, that we may gain a heart of wisdom.” Psalm 90:12

A Success Story

 

Last Friday, we had our typical quarterly meeting with Alex’s support team; however, it was not typical. A few months ago, we found out that Alex’s fantastic case manager who had worked with us for more than five years––ever since he started receiving state waiver funds for autism––was resigning to go into a different career. While we were terribly disappointed to lose her, not just because she was excellent at her job but also because she is a genuinely kind person who took great interest in Alex, we hoped that her replacement would continue the good work she had started.

Once we were notified who would be Alex’s new case manager, the person who coordinates his support services and budget, we asked his therapists if they knew her. Both his behavioral therapist and music therapist had worked with the new case manager before, and they described her as experienced, pleasant, and quite capable. Moreover, his music therapist mentioned that this case manager was often given difficult cases because she could adeptly handle them. While I hoped we weren’t considered a difficult case, I was relieved that we were going to be working with someone who has an excellent reputation.

In the days leading up to our meeting, I was a bit obsessed with making a good first impression on our new case manager. Since the meetings are held in our home, I wanted our house to be sparkling clean, so I washed curtains, scrubbed kitchen cabinets and appliances, wiped down walls and woodwork, and vacuumed upholstery in addition to my regular cleaning routine. Knowing that case managers are concerned with the safety of their clients, I made certain our fire extinguisher was where I thought it was, replaced batteries and tested our smoke detectors and carbon monoxide detector, and was prepared to show her that the hot water heater is set so that Alex can’t be scalded.

Besides physically preparing our home for inspection, I also mentally prepared for any questions she might ask. Although Alex is doing quite well, and we are delighted with the professionals who work with him, I wondered if she would question why he is not in a day program, as many disabled adults at his age are. As though I were preparing for an interrogation, I rehearsed what I would say in my head, making sure I sounded confident about our decisions but not defensive. Essentially, I was overpreparing.

In addition to having the new case manager at the meeting, we also had a new representative from the company that provides music therapy and respite care. Even though I had met him before, Alex and Ed had not. Alex’s music therapist, who provides entertaining Alex anecdotes during meetings, was unable to attend, but his behavioral therapist, who is one of his biggest cheerleaders, was going to be there to sing his praises. Also, she was bringing a new therapist she is mentoring so that he could observe the process of quarterly meetings. This meant that three new people would be attending, giving me even more incentive to make sure everything was as perfect as possible.

On the morning of the meeting, Alex seemed a bit anxious and confirmed my suspicion by waving “the claw,” his hand pointed down with his wrist at a 90-degree angle, a gesture he uses to let us know he’s not happy about something. As I asked him why he was upset, he told me that he was nervous about “so many new people” and letting “strangers” in our house for the meeting. Although I completely understood his anxiety about meeting new people, I reassured him that they weren’t really strangers but just people we hadn’t met yet. Once I explained that everyone in the group knew somebody and that his dad and I would be there along with his beloved behavioral therapist, he seemed less anxious about the meeting.

As it turns out, his fears and my concerns were wasted energy because the meeting went extremely well. The “strangers” were friendly, and the conversation flowed smoothly. Alex’s new case manager exceeded her excellent reputation, clearly capable of handling his case and supportive of all the decisions we have made, including our decision not to put him in a day program at this point. Moreover, she praised our support staff and told me that Alex’s therapists are wonderful, and we completely agree. With her comforting manner, I doubt she would have even noticed had I not vacuumed the couch and chairs.

During the meeting, we discussed the progress Alex has made in the past few years, and his behavioral therapist enthusiastically explained the improvements she has seen that have allowed Alex to enjoy community outings and crediting Ed and me for our support. We also discussed how Alex has adapted quite well to three anxiety medication reductions in the past eight months, which is apparently quite rare, according to his behavioral therapist and his case manager. In fact, his case manager summarized how well Alex is doing in so many ways by calling him “a success story.” She went on to explain that her experience has been that people with autism don’t improve as much as Alex has.

Knowing that she had read all of Alex’s files, even the harrowing introduction describing his out-of-control anxiety causing aggressive behavior six years ago that led to weeks of hospitalization in a locked psychiatric ward, I noted that she was impressed with the calm and pleasant current version of our son. While Ed and I were pleased that the meeting, despite all the new people, went smoothly, we were even more pleased that Alex was remarkably patient, polite, and engaged in the proceedings. He answered all of the questions asked of him well, and he sat nicely the entire hour. We could not have been any prouder of how he handled himself in this situation he had earlier admitted made him uneasy.

As we concluded the meeting, his case manager asked us, knowing the struggles we had faced, if we ever thought Alex would be doing as well as he is right now. To be honest, in my head I’ve had fears and doubts over the years, but in my heart I’ve believed that he would get better and better with time. To answer her question, I simply replied, “We prayed for this.” For all our fears, big and small, God has worked out all the details––from bringing us the right people supporting us in making Alex better to guiding us as parents how to best help him to healing his body and mind. While we are overjoyed that his case manager and therapists see Alex as a success story, we know who was truly responsible for bringing him this far, and we give the glory to God. Moreover, we wait with anticipation to see what God has planned for Alex to continue his success story.

“And my God will meet all your needs according to the riches of His glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen.” Philippians 4:19-20

'Tis the Season

Alex loves the holiday season and eagerly anticipates this time of year every year. This week, we enjoyed a pleasant Thanksgiving dinner with my parents that he helped me cook. Yesterday morning, we were able to get together for breakfast at one of Alex’s favorite restaurants with my siblings and their families and my parents. Although being in a crowded restaurant in a group of fourteen people could have been daunting for Alex, he handled the situation quite well and enjoyed being with his grandparents, parents, aunts, uncles, and cousins.

After about an hour, however, I noticed the subtle appearance of the dreaded “claw.” When Alex is overwhelmed or not happy about something, he bends his wrist down into an acute angle and bobs it up and down to let us know he’s not pleased. I was pleased that he waved the claw under the table so that only I could see it. Using the techniques that I have learned from his behavioral therapist, I told him that I knew he was upset and asked if I could do anything to help him. He waved his claw again to make sure I had seen it and then quietly told me, “It’s too hard to remember the haircut calendar.”

The haircut calendar is Alex’s go-to excuse that simply means he’s overwhelmed. He used to tell us when he was upset that he “never wanted to use the typewriter again!” No one was making him use a typewriter; this was just something he blurted in frustration. However, we know better than to minimize his anxiety, so I calmly told him that he had just had a haircut two weeks ago, which seemed to calm him a bit. I also gave him the option of going home––not as a punishment but as a way to escape a situation that may be upsetting him. He insisted that he wanted to stay, and he was able to use calming skills so that he was able to snap out of whatever was bothering him and enjoy the rest of the time. While I wish Alex didn’t have to suffer from anxiety, I’m happy that he has learned to deal with being upset without causing a scene and that he can calm himself instead of escalating into a meltdown. This is a huge blessing.

Yesterday evening, I had to employ some calm down skills of my own. Alex needed to have blood drawn for his regular six-month lab tests to make sure he is healthy and to check that his medication levels are appropriate. Thankfully, he never minds having blood tests, and lab technicians always remark on what a good patient he truly is. My anxiety was with the check-in clerk who was rather insistent that he needed to fast for ten to twelve hours prior to these tests. However, Alex does better in the evening when he is calmest; therefore, we always do the testing in the evening. Although I explained this to the clerk, she made some remark about the tests being inaccurate and told me that she would tell the lab technician that he hadn’t fasted.

Even though I knew I was doing what was best for Alex, I somehow felt as though I was being chastised and wondered if I would get more flack from the lab technician. However, we soon discovered that the warm and friendly lab technician was an autism mom herself who completely understood why we did not have Alex fast prior to the test. She explained that she never made her son fast before tests, either. I prayed for a sympathetic lab technician and was given an empathetic one who told us to ask specifically for her by name whenever Alex needed a blood draw. Not only did she enthusiastically praise him, but she also gave him apple juice as a reward for his bravery. As we chatted with her afterward, we were thankful to have someone who completely understood our situation. That was a huge blessing.

Earlier in the week, Alex had been talking with his behavioral therapist who was asking him about his favorite times of the year. He explained that his favorite month was December because Christmas and his birthday are in December. He went on to tell her that Christmas is his favorite holiday. When she inquired why, he immediately responded, “Because it’s Jesus’ birthday!” Of course, I was delighted by his answer, as was she.

As I put up Christmas decorations over the past few days, I’ve been trying to remember to savor the effort instead of resenting the extra work. I have decided that I’m going to do things that bring joy. My mom had asked Alex what his favorite decorations were, and he told her, “The cousins’ stockings.” Ironically, I had not yet put up the dozen small stockings with his cousins’ names on them, so he was remembering them from last year. In fact, I was debating about putting them up at all because it was one more task to do. However, once I discovered that they were his favorites, I immediately hung the stockings on our stair railing because they bring Alex joy, which brings me joy.

After I finished hanging our huge assortment of ornaments on our Christmas tree yesterday, Alex carefully surveyed my work, smiling as he studied the ornaments. When I asked him what he thought and what grade he’d give me, without hesitation, he enthusiastically told me, “A+!” Certainly, that high praise made the effort worthwhile, but his joy was an even greater reward. Most of all, I’m thankful for my son who reminds me that the true importance of Christmas is finding joy and celebrating the birth of God’s son. What greater blessing could there be?

“You will conceive and give birth to a son, and you will name him Jesus. He will be very great and called the Son of the Most High. The Lord God will give him the throne of his ancestor David.” Luke 1:31-32

Thankful

 

As we celebrate Thanksgiving this week, we recognize all the blessings for which we are truly thankful. Although we have been through times when being grateful wasn’t always easy, we made sure to find something to appreciate about each day. Now that Alex is doing quite well, we make certain not to take these good days for granted and praise God for all He has done for us.

For good health, we are thankful. Not only have Ed and I been blessed with remarkably good health so that we can take care of Alex, but Alex is getting healthier all the time. The inflammation that has plagued him, as evidenced by acne, yeast overgrowth, and irritability, appears to be under control. His complexion is clear without needing acne medication, his appetite is good, he sleeps peacefully, and his mood is nearly always pleasant and upbeat. Praise God for these blessings!

For financial stability, we are grateful. Even though autism has brought about unexpected expenses, such as multiple therapies, nutritional supplements, and a gluten-free and dairy-free diet, all of which are needed to address various issues, we have always had plenty of money to pay for them. Even though we are both teachers, and I only work part-time so that I have more time to devote to Alex, our salaries have been more than enough to meet our needs. Now that Alex is an adult, he receives disability funding that allows him to receive additional therapies and support. Praise God for these blessings!

For Alex’s support team—his psychiatric nurse practitioner who manages his anxiety medications, his case manager who oversees his budgets and coordinates his services, his behavioral therapist who teaches him coping and social skills, his music therapist who helps his language skills and anxiety, and his respite care companion who engages him in conversation and allows him to enjoy a peer friendship––we are appreciative. Not only are all of them exceptional at their jobs, but they are also wonderful people who see the best in Alex and strive to make him better through encouragement. Along with us, they celebrate his accomplishments. Praise God for these blessings!

For the progress Alex has made that allows us to enjoy a “normal” family life, we are thankful. Now that we can go to sporting events, concerts, restaurants, stores, and parks, enjoying our time together as a family, we remember when Alex wasn’t able to do any of those activities and feel fortunate that he has learned to cope with his anxiety. For many years, we couldn’t go anywhere together, and now we engage in recreational activities almost daily. Praise God for these blessings!

For family and friends who have supported us and prayed for us, we are filled with gratitude. When we struggled through difficult times and felt overwhelmed, we knew that we had loved ones who cared deeply about us and our situation. We also appreciate those who understand that sometimes the seemingly small steps are in actuality great milestones for Alex. I am especially thankful for my parents who have been Alex’s greatest cheerleaders. For their unwavering faith in him and unconditional love for the three of us, they have more than earned the honor of having Alex name them first when he’s asked who his friends are. Praise God for these blessings!

For the grace of God who saw us through difficult times and for the healing of God who has made Alex better, we are overwhelmed with thankful praise. When we couldn’t see how things were going to work out, we knew that God had plans for our lives and trusted Him to arrange the details, which He did. When we didn’t know what to do, God guided us to the right choices and the right people who could help us. When we didn’t know how to reach Alex because he was filled with anxiety, God never let him go and kept him safe until the storm passed. During that time, Alex developed an unwavering faith and trust in God that carries him through life. Praise God for these blessings!

Not just on Thanksgiving, but every day, we realize just how blessed we are, especially when we see how far Alex has come and recognize all that we were given so that he could make great progress. Praise God for these blessings!

“I will give thanks to You, Lord, with all my heart; I will tell of all of Your wonderful deeds. I will be glad and rejoice in You; I will sing the praises of Your name, O Most High.” Psalm 9:1-2

To Be Happy

 

This week, I felt a bit wistful about starting another school year. Although I really like working with my colleagues and students, I felt sad to see our best summer ever with Alex come to a close. Because he has made so much progress, we were able to enjoy many family activities, such as going to concerts in the park, playing games at our local family arcade, dining out at a variety of restaurants, and relaxing together at home. Knowing this transition of my going back to work would mean a time of adjustments for all of us, we tried to make this past week easier for Alex. By giving him a printed agenda of the various beginning of the year meetings I would be attending, I thought it would help him be less anxious about where I was and when I would be home. As he carried around my schedule all of last week, Alex appeared more relaxed than he usually is at the beginning of the school year, and checking off the activities at the end of each day was helpful for both of us. After a week of unusual busyness, we are looking forward to getting back to the usual routine, even as Ed begins his semester this week.

On Wednesday, the first day of classes, two emails appeared in my home inbox that I found interesting, especially since they seemed to be a sign of the positive attitude I’m trying to maintain, even at the end of a terrific summer. The first, which came from our health insurance’s monthly newsletter, is entitled “Happy people: 8 simple secrets they know.” [To read this article, please click here.] Based upon research, the article offers helpful tips about cultivating happiness. This list includes the following guidelines: connect with family and friends, be grateful for good things, help others, think positively, get exercise, have fun and be creative, get rest, and be optimistic. These suggestions seem to be good goals for me to pursue as I begin the school year in order not to become overwhelmed by thinking of all the things I need to do.

Along with this article, I also found some good ideas in an email from psychiatrist Dr. Daniel Amen. In his article “The Number One Habit to Develop in Order to Feel More Positive,” he discusses the problem of ANT––Automatic Negative Thoughts. [To read this article, please click here.] Dr. Amen explains that these automatic negative thoughts he sees in his patients “were robbing them of their joy and stealing their happiness.” He adds that these ANTs are responsible for depression, anxiety, and negativity.

In order to recognize these negative thoughts, Dr. Amen describes a few of the common ANTs. For people who have panic disorders, “Fortune Telling” is common; the person predicts bad outcomes, despite any evidence. In “Mind Reading,” the person believes they know what another person is thinking, and this assumption can harm relationships. Those who engage in “Guilt Beatings” focus on “should, must, ought, and have to” as they feel badly about what they are doing or are not doing. In the “Blame” type of thinking, the person becomes a helpless victim who cannot change a situation, blaming others and not taking responsibility. Finally in “Labeling” the person resorts to name calling, which diminishes the ability to analyze the circumstances clearly. After considering Dr. Amen’s negative thought categories, I realize that I find myself in fortune telling, mind reading, and guilt beating mode at times, and I know that I need to quit making assumptions about what will happen and what others think and to stop being so hard on myself.

Dr. Amen, a neuroscientist, explains how positive and negative thoughts have contrasting physical effects on the mind and the body. Negative thoughts cause the brain to release chemicals that make hands clammy, muscles tighten, breathing shallow, and the heart rate increase. In the brain, negative thoughts impair judgment, learning, and memory. By contrast, positive thoughts warm the hands, relax muscles, deepen breathing, and decrease pulse and blood pressure; in addition, the brain works more effectively. Dr. Amen emphasizes the need to recognize and identify negative thought patterns and to take control of thoughts, emotions, and behaviors in order to “experience peace of mind and joy.” His assertion that self-awareness can change a person’s outlook on life is compelling. Clearly, focusing on the positive is essential to a happy life.

On Thursday evening, our school held its annual open house where parents are invited to meet the teachers. After I finished meeting with my students’ parents, I had the unexpected pleasure of running into a friend of mine whose child attends the school where I teach. In addition, we are both autism moms to sons who tower over us in height. As we happily compared notes about how well our boys are doing and what great summers they both had, we commented about how much we appreciate chatting with someone who “gets it,” who understands what life with autism is really like.

Instead of complaining about the obstacles autism presents in our daily lives, however, she and I began a dialogue about the positive aspects of our lives. We don’t worry about girls breaking our sons’ hearts right now. Unlike parents of typical young adults, we don’t have to worry about our sons driving because they currently don’t have the ability to do so. While some of our family and friends are dealing with the separation anxiety of having their children go away to college, ours are safely home with us. In fact, they will likely be with us for a while, and we’re fine with that, especially because they have become so pleasant, and we enjoy their company. Moreover, we’re delighted that our sons allow us to kiss and hug them without any fear of embarrassing them. For all the things in life that autism has made difficult, we are well aware of the good things that bless our lives and make us grateful to be their moms.

As I work toward eradicating negative thoughts and focusing on the positive, I have the additional blessing of a wonderful role model. Although Alex and I both deal with anxiety, we have learned coping skills that help us to fight our fears, and our faith is the most powerful tool in our arsenal. The vast majority of the time, Alex takes a positive outlook on life, savoring even the smallest of joys––decreasing gas prices, the sound of a pleasant voice, the taste of a favorite food––and realizes that life is to be enjoyed, not endured. Perhaps God knows that I need Alex’s optimistic outlook on a daily basis, so he’s home with me. While I think I have things to teach Alex before he’s ready for the world; he probably knows that he has much to teach me, as well. Until both of us are ready, we will enjoy our time together and know how blessed we truly are to have each other.

“So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can.” Ecclesiastes 3:12

Alex's Garden

 

Today is the last day of my summer vacation as I start my next school year of teaching tomorrow. Although I feel wistful about ending what has been our best summer ever as a family, we are delighted that Alex has shown so much promise these past few months. Last evening we went to a party at my brother’s house with more than two dozen people, and not only did Alex behave appropriately the entire time, but he also thoroughly enjoyed himself. Even when he came home, he seemed to be replaying the evening in his mind, smiling in amusement. After a summer filled with walks in the park, downtown concerts, old-time baseball games, evenings at the local arcade, meals at favorite restaurants, relaxing on our screen porch, following his beloved Chicago Cubs on television, and family gatherings like the one last night, Alex has enjoyed a rich and full summer. Watching him enjoy himself and knowing he has been content has blessed our lives immeasurably.

The summer began with some trepidation, however, as his psychiatric nurse practitioner recommended that we reduce one of his medications for anxiety because he was doing so well. With the coping skills he has learned in therapy, Alex has developed appropriate ways to calm himself when he feels overwhelmed. Although we feared that he might regress in his behavior with this medication reduction, the opposite has been true. Instead of being more anxious, he has been remarkably calm. Another benefit to this change has been that his mind is sharper, and we have seen his quick wit return along with improvements in his speech. Of course, we are thankful for this progress and for the wisdom of his nurse practitioner who knew what Alex needed to get better.

One of our summer projects has been the evolution of Alex’s garden. At the beginning of summer, I asked Ed if he had any plans for the patch of weeds that was taking over a section of our backyard along our back fence. Wisely, he realized that I probably already had a plan in mind and was willing to go along with what I wanted to do with that overgrown mess. Bless his heart, he spent days tearing out all those weeds so that we could start over with a rock garden. After hauling five tons of river rock and laying seventy paving bricks along the edges, Ed completed the hardest work of the task. Then the three of us worked together on the creative aspect––choosing what should go in Alex’s garden.

As we ran around to all the garden stores in our area, we talked about what would look good in our new rock garden and have meaning for our family. We enjoyed our outings, searching for those items that would complete the garden, and when we couldn’t find what we wanted, we searched on the Internet to find the items that seemed elusive. Along with the items we purchased ourselves, we added to the garden some decorations we bought with an Amazon gift card given to us by my parents as an anniversary gift. After thinking and planning and discussing and searching and a lot of hard work on Ed’s part, Alex’s garden came to fruition.

Because of Alex’s interest in weather, the garden has a windmill so that we can observe the speed and direction of the wind.

Knowing that red is Alex’s favorite color, we found this red flower that decorates the garden and also spins in the wind.

We also have a rain gauge to measure precipitation. The little red wheelbarrow is a reminder of all those rocks and bricks Ed hauled back there. The dozen solar lights along the edge make the garden look like a disco at night as they change from red to blue to green and back throughout the night.

Because Alex’s favorite animal is the turtle––perhaps because, like him, it takes its time yet steadily moves along––we found a turtle statue to sit upon the stump of a tree that was cut down a few years ago.

An even better find was the statue of a little boy who looks like Alex holding a turtle.

Since Alex loves keeping track of time, we searched and searched for an old-school timekeeper, a sundial. He picked this one out on Amazon, and the adage “Time flies” seems appropriate for a summer filled with fun where time, indeed, did fly.

This stepping stone seemed a perfect reminder of our time spent this summer working together on this garden and savoring the blessings and joy God has given us as a family.

In many ways, Alex’s garden is symbolic of our life as a family. From a chaotic and tangled mess of weeds––autism––we worked together as a family to create order and to accomplish our goals. We discussed and planned and searched for what we needed. We celebrated what makes Alex special. After steadily working and patiently waiting for what we needed to find, suddenly all the pieces seemed to fit together. And, as always, we looked around at our blessings and thanked God for His goodness. Alex’s garden will stand as a testimony of how God answered our prayers to make Alex better and will remind us of a summer filled with joy and even greater hope for our future.

“Things are going to happen so fast your head will swim, one thing fast on the heels of the other. You won’t be able to keep up. Everything will be happening at once––and everywhere you look, blessings!” Amos 9:13