While We Wait

 

Today marks the first day of Advent, the season leading up to Christmas. In the Christian Church, Advent, from the Latin word adventus meaning arrival, is a time of anticipation, waiting for the celebration of the arrival of Baby Jesus. In the business world, this first day of Advent comes between the significant shopping days of Black Friday and Cyber Monday, and merchants await the profits to be gained from eager holiday shoppers. For most people Advent is a time of waiting for Christmas marked by a flurry of activity in preparation for this important holiday.

Like many people, Alex eagerly anticipates Christmas, his favorite holiday, counting down the days on the calendar. Like me, Alex is not by nature a patient person. However, he relies upon his beloved numbers and measuring tools of clocks and calendars to help him deal with waiting. Moreover, he has adopted a philosophy about the future, often telling us: “Wait and see.”

This week, we have had our patience tested in situations where we had to wait. On Friday, Alex’s ever-punctual music therapist was late for the first time because he was involved in a meeting that ran longer than he had anticipated. Although he called to let us know he would be late, I knew that Alex was becoming more anxious every minute he had to wait. Checking his watch and the clock on the wall, Alex was patient at first, but as time passed, he became more and more concerned whether his music session would ever happen. Adding to his frustration was that he was looking forward to singing Christmas songs that his therapist had promised the previous week. As I talked him through his anxiety, I gave him the choice to leave or stay, and he chose to stay. The wait was worth the effort because when his therapist arrived, they were able to sing the songs Alex had been waiting to sing all week long. Of course, Alex’s first request was “The Twelve Days of Christmas,” a carol about waiting for the good gifts to arrive.

This weekend, as I ran some errands, I also had to muster up my own patience, as the official start of the Christmas shopping season brought more people out seemingly to get in my way. As I waited in my car for people who acted as though they’d never seen green traffic lights before, waited for people who seemed to want to stand endlessly in front of items I needed to buy, and waited in lines to check out behind people who couldn’t make decisions about how they wanted to pay, I took deep breaths and tried to keep my peace. Knowing that the month of December will be filled with these moments of waiting, I found myself questioning: What do we do while we wait?

A quick concordance search of the Blue Letter Bible online shows that the word “wait” appears in 70 verses in the New Living Translation of the Bible and in 101 verses in the King James Version of the Bible. As I scanned through these verses, I noticed that not only are we told to wait, but we are also told how to wait. The verb “wait” is often followed by the adverbs “patiently” and “quietly.” Scriptures also tell us to wait “confidently,” “eagerly,” and “with eager hope.”

Consequently, we know how we’re supposed to wait, but I still struggle with what I’m supposed to do while I wait. From the time Alex was diagnosed with autism, I have been waiting for him to get better, sometimes patiently waiting, but often times restless and frustrated when progress seemed slower than I thought it should be. To fill my time, I focused on autism research, seeking answers to my questions and trying to find ways to make Alex better.  When I find myself too focused on the future and the “what if’s” both positive and negative, I have to remember to live in the present and have faith that God has already figured out the future for Alex.

When I question Alex about future events, such as which sports team he thinks will win a game or what he thinks the weather forecast will be, he reminds me to watch for what the future holds by saying, “Wait and see.” Not only does he understand that waiting––even though he and I both dislike that process––is part of life, but he also holds anticipation for what is to come. Moreover, he has an expectation that waiting will bring a reward. To understand the value of waiting requires peace brought with patience along with hope bolstered by faith. Alex’s complete and unquestioning faith in God allows him to believe that if he waits, he will see something good, even if it’s as simple as being able to sing “The Twelve Days of Christmas” with his music therapist.

During this sacred yet busy time of Advent, I pray that I remember to be patient as I wait, knowing that good things will arrive in their good time. Just as certainly as I know that Christmas will arrive on December 25^th, I also know that Alex will get better in time. Trusting God, I will strive to wait patiently, quietly, eagerly, confidently, and with eager hope at what He has planned for Alex’s future, which I have no doubt will be something to see.

“Such things were written in the Scriptures long ago to teach us. And the Scriptures give us hope and encouragement as we wait patiently for God’s promises to be fulfilled.” Romans 15:4

Thirty Thankful Thoughts

 

In preparation for Thanksgiving, many people take time during the month of November to reflect upon those things in their lives for which they are grateful. Some post daily statements of thankfulness on their Facebook walls, and others share their blessings around the Thanksgiving dinner table. Although I have developed a habit of thanking God through quick prayers throughout each day, even for seemingly trivial blessings like getting good parking spots, finding my contact lenses when I drop them on the floor, and enjoying the comfort of my bed, I also remember to thank Him for the great blessings in my life. This year I did not do daily postings on Facebook, but I sat down this morning to make a list of thirty things for which I am thankful and was amazed how quickly that list came to mind. Like my prayers throughout each day, some items on the list may seem obvious because of their importance, but other smaller ones carry impact because they, too, remind me of God’s goodness, especially those that reveal how far He has brought Alex in spite of autism. Without further ado, here are this year’s thankful thirty:

Family––We are always grateful to our families who have loved and supported us in all situations and who have celebrated Alex’s accomplishments with us.

Friends––I am thankful to my friends who have become family, taking special interest in Alex, praying for us, and understanding that he is always my first priority.

Financial Security––We are blessed that our job schedules coordinate so that either Ed or I (or both of us) can always be home with Alex. Even though I work part-time, our teachers’ salaries have always been enough to provide what we need to live a reasonably comfortable life, despite the added expenses autism has brought. We have confidence that God will provide what we need financially.

Nurse Practitioner––When Alex’s behavior became extremely difficult to handle nearly four years ago, we searched for a professional to help us. God led us to Michelle, who had experience working with young men who had autism, and she knew what to do to help Alex. Her expertise in finding the right mix of medications to treat his anxiety and subsequent aggression has completely changed our lives and made our home peaceful, a tremendous gift we never take for granted.

Pharmacists––Our pharmacists Anita and Kris not only do a terrific job helping us keep Alex’s medications straight and answering my various questions, but they also show kindness to him, greeting him warmly and asking how he’s doing.

Behavioral Therapist––After two years of working with Alex, Jennifer has become his teacher, confidant, cheerleader, and friend. Moreover, she has become all of those roles for me. Her guidance and support have been crucial in the tremendous progress Alex has made.

Music Therapist––Noel is one of those rare people who just understands Alex and brings out the best in him. Alex even expanded his limited wardrobe of striped shirts to flannel button-down shirts and graphic t-shirts because his role model, Noel, wears them. Although Noel’s personality is usually low-key, when Alex does something amusing or shows initiative by suggesting songs or spontaneously singing, he animatedly shares the experience so that I can enjoy it, too.

Director––The director of developmental disabilities at the agency where Alex receives music therapy and respite care is especially fond of Alex and makes a special effort to engage him when we arrive for music therapy. Laurie makes no secret of how much she likes him, telling me last week that he is “delightful.” In addition, she often compliments the job Ed and I have done as Alex’s parents, which is an added bonus.

Companion––We had to wait two years before finding a respite care worker for Alex, but she was worth the wait. Funny and sweet, Jessica understands Alex’s quirks and finds him very amusing. Although I know that he likes her as much as she likes him, he made his affection known for the first time recently when he spontaneously hugged her goodbye, which made her eyes fill with tears of joy.

Case Manager––Alex’s case manager, who oversees all his paperwork and finances with the state, is an energetic, smart, and friendly young woman who has the reputation of being the best case manager in the area. Knowing that Zika is even more organized than I am, I completely trust her to make sure all his services and supports are arranged properly. When she was recently promoted, she gave several of her clients to other case managers, but kept us, and we are thankful she did.

The Kindness of Strangers––As we have been taking Alex out in the community more, we have the opportunity to see kindness in people who recognize his disability but see past it to his pure heart. We appreciate those who make an effort to engage him in conversation, albeit limited, making him feel special. A couple of weeks ago, a kind man bought our dinner at a restaurant, telling us that he saw us taking care of Alex and wanted to take care of us. Our experiences with Alex have shown us unexpected goodness in people.

The Internet––When autism has isolated us, the Internet has allowed us to interact with others who shared our experience and kept us from feeling alone. Moreover, the ability to do autism research so easily has been a tremendous blessing over the years.

Mother’s Intuition––Raising a child with autism brings responsibilities over and above those of typical parenting. In making decisions, Ed and I discuss the options and pray for guidance. However, my mother’s intuition often guides me to the right places, and I know that God is really the force behind those instincts.

Because Alex has made good progress in various areas, I am thankful for the things he has learned and the things he is doing that show that progress, such as:

Independently Toileting––Every time Alex flushes the toilet, I say a prayer of thanks that he can use the toilet on his own. After years of accidents, cleaning carpets, doing multiple laundry loads of his clothing and sheets, and trying every potty training technique known to man, I am so grateful that he finally learned to use the toilet. This accomplishment, more than most, reminds me that some things take a long time to learn and that I should never give up hoping that he will eventually be independent.

Hanging Up His Jacket––One of the things Alex learned in his previous day program was how to hang up his jacket. Even though it may take several tries, he keeps trying, a testimony to his persistence, which has helped him make progress along the way.

Putting Away His Dishes––Alex has begun cleaning up after himself without being told. When he brings his dirty dishes to the kitchen sink without a reminder, we are reminded that he is showing responsibility, which is encouraging and gratifying that he is learning.

Finding Lost Items––Instead of having a meltdown because he can’t find his stuff, Alex now calmly looks for his missing belongings on his own without demanding we find them for him. Moreover, he even looks in reasonable places, and he finds his efforts rewarded by being able to find what he has misplaced.

Patience––Alex has learned to wait patiently, which is a testimony to his progress, because waiting used to bring anxiety. Armed with a watch and a schedule, he knows that good things come to those who wait, and he is willing to wait patiently instead of driving us crazy with repeated questions regarding when things will happen.

Responsibility––After years of carelessly leaving his belongings around the house, often on the floor, Alex finally learned to take care of his things. We are amazed by how carefully he handles his iPad and his eyeglasses, treating them responsibly because he knows they are fragile. In addition, he has learned not to touch breakable items in our house, which means that we have been able to return our glass and porcelain knick knacks throughout our home after they spent years of hiding packed away in the safety of the basement. Their presence reveals our trust in Alex and his respect of property.

Attention Span––Alex can now watch an entire movie or a sports event on television and follow what is happening because his attention span has gotten much better. Not only does he watch these with interest, but he also asks good questions about what is happening so that he can learn more.

Companionship––Along with watching television, sports, and movies with us, we enjoy a companionship with him in other daily activities. He has become my sous chef who keeps me company and helps me when I’m making dinner. Instead of demanding when dinner will be and whining that it’s taking too long, he enjoys taking part in the process and knows that the effort will be worthwhile.

Appetite––Even though Alex can’t eat grains with glutens or milk products, he has a healthy appetite and a willingness to eat a variety of foods, especially healthy ones. In fact, Alex is probably happiest when he is eating a meal, and he takes his time to savor every bite.

Going Places––Because Alex’s behavior has improved significantly, we have been able to take him many different places, which he enjoys thoroughly, whether it’s going to sporting events, concerts, stores, or restaurants, which combine his love of food and going places. Not only does he have a good time, but we also have fun watching him enjoy himself during our family outings.

OCD Under Control––Thanks to medication, Alex’s OCD has been under much better control. His recent obsessions seem to have faded, thank God. We no longer have to wander the aisles of Pet Supplies Plus every Sunday evening, we no longer have to keep a surplus of Welch’s sparkling grape juice in the refrigerator so that we never run out of it, and we don’t have to answer questions every hour about when bath time is. This is good, and we are thankful.

Breakfast––For some unknown reason, Alex stopped eating breakfast a few months ago. However, his morning attitude became grouchy and demanding. After putting two and two together, my mother’s instinct kicked in and thought there may be a connection between the two. Thinking that low blood sugar from not eating may contribute to Alex’s crabby morning disposition, we decided to encourage him to eat breakfast, and the results have been rewarding. Feeding Alex breakfast has made him much more pleasant, not just in the morning, but also for the entire day.

Good Health––For the most part, Alex is quite healthy and rarely gets sick. His good appetite, willingness to take vitamins, and following my directions to keep him healthy all contribute to his good health, but God’s protection provides what Alex needs. This weekend, Alex has a cold, and he has shown what he has learned by asking for vitamin D and pain reliever and by resting and eating healthy foods. Apparently reading all those medical books has paid off for him!

Yeast Be Gone––After dealing with yeast overgrowth in Alex’s digestive tract for more than four years, we currently have it under control using a nutritional supplement, SF 722, that acts as a natural antifungal. Because the yeast is irritating, causing sores in Alex’s mouth and throat, dandruff, and acne, he responds to these flares with bad behavior. After trying a variety of antifungal medications and supplements that temporarily relieved the symptoms, we have prayed for a cure and think we may have one. We are tremendously thankful for this healing.

Taking an Interest in Others––Perhaps because he is less anxious and feeling better physically, Alex has begun to take a greater interest in other people. He wants to know more about their lives and interests, and he asks good questions (instead of his former nosy ones wanting to know statistics such as age, weight, and how much money they have) that reveal his desire to learn about them. This truly shows progress on his part.

Prayers––My favorite time of the day is saying bedtime prayers with Alex. His insistence on praying for everyone he has ever known and even throwing in some people he doesn’t (such as former baseball player Sammy Sosa) makes me smile, and holding his hand as we talk to God together is a precious time I treasure. He exudes a peace and joy as we pray, and I am blessed to share that with him on a nightly basis.

Faith––Although my parents raised me to have faith that I have also shared with Alex, dealing with the struggles that autism has brought our family has strengthened my faith beyond what I could ever imagine. Moreover, Alex has reminded me to have a deeper faith––that complete child-like faith that he shows––knowing that no matter what, God is always with us, guiding us, loving us, and blessing us. Happy Thanksgiving!

“Give thanks to the Lord, for He is good! His faithful love endures forever.” Psalms 118:1

One in 45

 

The latest U.S. autism statistics were announced two days ago, and the news is not good. According to the report from the Centers for Disease Control and Prevention and National Center for Health Statistics, the prevalence of children between the ages of 3-17 who have autism is now 1 in 45. More alarming is the rate of increase. Between 2011 and 2013, the rate was one in 80, or 1.25 percent of children. With the current statistics showing that 2.24 percent of children have autism, this shows an 80 percent increase in just a few short years.

Of course, the researchers want to make all kinds of excuses about why the rate of autism is dramatically rising instead of simply acknowledging what parents and teachers already know—we have a lot more kids with autism than we did in the past. One of the reasons given for the increase was a change in the questionnaire format. Specifically, the lead researcher notes that autism is now listed first on the questionnaire ahead of developmental disabilities, and he believes that more parents chose autism because it was listed first. Certainly, a real increase in autism rates couldn’t possibly be the reason; furthermore, one could not expect autism parents to fill out forms correctly [sarcasm intended].

Moreover the usual suspects have been cited as possible reasons for the increase in autism found in this research study: over diagnosis of autism and the ever-vague and rarely specifically named possible environmental factors. Naturally, all parents want their children to have autism, especially if it’s going to be such a popular diagnosis. All the cool kids will have an autism label, and apparently more and more will be getting one. Some mothers aspire to be soccer moms and take their kids to games and practices; others prefer to take their kids to speech therapy and ABA therapy and occupational therapy, just a few of the perks of being an autism mom [again, sarcasm intended].

In an article entitled “Autism cases in U.S. jump to 1 in 45: Who gets the diagnosis, in 8 simple charts,” The Washington Post shares an excellent overview of who these children identified with autism are. [To read this article by Ariana Eunjung Cha, please click here.]

1. Approximately half of children (55.4%) are between the ages of 3 and 10; children between the ages of 11 and 17 make up 44.6% of those diagnosed with autism.

2. Traditionally, the number of boys with autism has always been greater than the number of girls with autism. This trend continues, as the current research shows that three fourths of the children with autism are boys versus one fourth of the children are girls. This shows an increase in the number of girls being diagnosed with autism, however. In the 2011-2013 study, only 18.3 percent were girls. With the help of my husband, who is much more mathematically inclined than I am, these new statistics mean that approximately one in 27 boys has autism. That means that statistically, every typical classroom will have one boy with autism. Having taught for more than thirty years, I can confirm that the number of students with autism has risen dramatically during my career in teaching. I can also confirm that most school districts are in no way ready to handle these students with very special needs.

According to the Indiana Resource Center for Autism based at Indiana University in Bloomington, Indiana, my home state, the number of students identified with autism spectrum disorders is clearly on the rise. In a recent article entitled “Increasing Incidence of Autism Spectrum Disorders Continues in Indiana" [To read this article, please click here.], the increase in actual numbers of students in Indiana public schools who have autism spectrum disorders is staggering.  According to the Indiana Department of Education, the number of students with autism enrolled in Indiana public schools is 14,179 out of 1,009,943 total students, or 1 in 77 students. Of course, some parents of children with autism choose to enroll their children in private schools or to home school them, as we did Alex, because public schools often cannot meet the unique needs students with autism have.

What is more mind-boggling is the graph this article includes, showing the increase of students who have autism in the Indiana public schools. While the number of students with autism this current school year (2014-2015) is a little over 14,000, five years ago, that number was a little under 11,000. Ten years ago, the number of students with autism in the Indiana public schools was less than half of the current rate at a little over 6,000 students. To truly boggle the mind, in the 1998-1999 school year, when Alex would have been a first grader, the number of children with autism in Indiana public schools was about 2,000. In sixteen years, the number of students who have autism in Indiana public schools has increased more than seven times.

As if those figures weren’t unsettling enough, this article also points out the monetary factors involved with autism. Quoting the CDC research, the article notes that the estimated cost of caring for a child with autism is $17,000 to over $21,000 per year more than raising a child who does not have autism. These extra expenses include costly therapies, health care, and education. If the autism rates continue to grow, how will schools afford to provide education to all these children with autism?

3. Autism affects all races, but predominantly the majority (59.9%) of children with autism are white. Hispanic children make up 16.1% of the total, Black children account for 13.5%, and other ethnicities total 10.6% of the children diagnosed with autism. These statistics mirror the overall population statistics, with approximately 17% of the U.S. population identified as Hispanic and 13.2% of the U.S. population being Black. Consequently, autism seems to affect all ethnicities fairly equally.

4. Contrary to the reports that autism breaks up marriages, most children with autism (68%) live with both parents.

5. Children with autism come from all levels of income fairly equally. In dividing the levels of family income into four groups, the highest level of income was 21.5%, the next level was 25.1%, and the lowest level was 21.4%––all statistically similar. The third group, just ahead of the lowest level of income was the highest at 32.1%. One wonders if this level is made up of parents who are struggling to pay for the $17,000-$21,000 of extra costs for therapies needed for their children with autism.

6. In comparing parents’ levels of education, approximately two thirds of the parents of children with autism have more than a high school education, and a little less than one third of the parents reported having a high school education or GED or less.  The researchers assume the reason for higher rates of children with autism in better-educated parents may be that they are more observant and more likely to get help for their children.

7. Slightly more than half (54.7%) of children with autism live in a large metropolitan area. Perhaps their parents have migrated to these areas because they can find better services often associated with large children’s hospitals found in major cities.

8. Nonetheless, children with autism can be found throughout the U.S. According to this study, 21% live in the Northeast, 21.5% live in the West, 26.2% live in the Midwest, and 31.2% live in the South. Once again, autism shows that it doesn’t discriminate; fairly equal numbers can be found throughout the country. Moreover, the impact of increasing numbers of children with autism should be a growing concern in every part of our nation.

While this newest research not only indicates an increase in numbers of children and their families impacted by autism, its statistics also show that autism can be found everywhere in the U.S. in every age of children, gender, ethnicity, family structure, income level, level of parental education, and geographical type and region. What this research does not indicate is the definite reason for this epidemic, nor does there seem to be much effort made to find a cause for autism.

To make feeble excuses about how questions are answered or possible better diagnostic methods does not address the costs—emotional and financial—of providing support for all of these children with autism in family, educational, and medical settings. To ignore this problem that is clearly growing rapidly is at best foolish and more likely disastrous. As an autism mom, I will not be silent. We must figure out what causes autism now for our children’s sakes as well as for our society that cannot provide for the needs of those currently diagnosed with autism, let alone those who will be diagnosed in the future. With God’s help, I pray that we find the answers we desperately seek.

“Get ready; be prepared! Keep all the armies around you mobilized, and take command of them. You and all your allies—a vast and awesome army––will roll down on them like a storm and cover the land like a cloud.” Ezekiel 7, 9

Jazz and Joy

 

This past week, we took Alex to a jazz concert performed by the Faculty Jazz Trio at Valparaiso University. As I have mentioned in previous blog entries, Alex loves jazz music, thanks to Ed, who introduced him to various types of jazz as they listened to CD’s together over the years. I suspect that Alex’s fondness for this type of music lies primarily in his association of jazz with pleasant times spent listening to the music with his dad. Additionally, I think he probably likes the instrumental music because he doesn’t have lyrics to distract him from the music itself. However, I also know that Alex has a special affection for any words that have two z’s in them: blizzard, drizzle, Rizzo (his favorite baseball player), pizza, and jazz.

Like Alex, I have developed an appreciation for jazz because of Ed’s interest in it. Once Alex became hooked on the music, I also learned to enjoy it even more because it was something we all could share as a family by going to concerts together. Similarly, I discovered an interest in NASCAR after seeing Ed and Alex thoroughly engaged in watching stock car races on television every weekend. Trying to figure out what they found so appealing, I, too, was drawn in to watching auto racing, which is now my favorite sport, as well as another common interest we share as a family.

One of the nice things about living in a college town is the opportunity to take Alex to various events that he finds entertaining, such as concerts. To be honest, any time we take him to events at the university, whether they be concerts, astronomy lectures, or sporting events, I feel a little wistful. As I see the college students who are about Alex’s age, I feel somewhat sad to recognize that they are living the life that Alex could be enjoying, had autism not affected his brain and made speech, fine motor, and social skills so difficult for him. Of course, he is oblivious to this realization, which is a blessing. He doesn’t know what he’s missing.

During the concert, Alex swayed to the music, watched the musicians intently, and smiled frequently as he showed delight at being able to be part of a live music event. As Ed commented afterward, the best part of the concert was watching Alex enjoy himself so much. Moreover, we were pleased to see that he has learned appropriate social behavior, sitting quietly, paying attention, and even knowing when to applaud. With jazz concerts, this takes some learning because applause is not limited to the ends of songs; Alex now knows that clapping is appropriate at the ends of solo performances within the songs. At one point between songs, he leaned over and quietly asked Ed why no one had played the saxophone that was placed on the stage, showing that he was very alert to what was happening. Ed explained that a guest musician was going to play the saxophone, and when the saxophone player joined the trio, Alex gave a knowing smile.

When I wasn’t watching the musicians who clearly loved playing music or Alex who clearly loved hearing music, I glanced around the audience to see others’ reactions. What I noticed was that none of the college students were nearly as engaged in the concert as Alex was. Looking bored or engrossed in whatever was on their phone screens, they were missing the enjoyment of the moment, the joy that Alex found in the music. Perhaps they were worried about studying they needed to do after the concert or concerned about keeping up their friendships through texting and social media—none of which bothers Alex because he doesn’t live the life of a college student.

While Alex may miss out on the typical things that college students enjoy, he also is spared from the worries many college students suffer. He just enjoys life to the fullest, delighted to go places, and he expresses his joy freely, not caring what anyone thinks of him. What makes Alex’s contentment even more special is remembering the dark times when anxiety held him captive and made him unable to experience joy. Although those times of sorrow seem wasted, we realize that we appreciate Alex’s happiness even more because it was restored to him and to us after many trials and heartaches.

As described in Chapter 61 of Isaiah, we are now living “The Year of the Lord’s Favor”: “And so you will inherit a double portion in your land, and everlasting joy will be yours…All who see them will acknowledge that they are a people the Lord has blessed.” While we have gone through ordeals with autism, Alex has overcome many obstacles, and he faces life with appreciation for what he has instead of bitterness for what he has lost. Moreover, we have learned to face the future with faith and hope instead of fear. Truly, as the Psalmist proclaims, we “sing a new song to the Lord, for he has done marvelous things”!

“Those the Lord has rescued will return. They will enter Zion with singing; everlasting joy will crown their heads. Gladness and joy will overtake them, and sorrow and sighing will flee away.” Isaiah 51:11

Caregiver

 

“Mrs. Byrne, what’s your son going as for trick or treating?” asked one of my seventh grade students on Friday. Now that the first quarter of the school year is over, my students know that they can ask me questions about my personal life, and I know that they are curious about my life outside of school.

“He’s not going trick or treating. He’s an adult,” I reminded them. Some of them looked at me curiously; others remembered that I had told them that he’s twenty-three years old.

“But I thought the reason you only teach in the mornings is because you have to go home and take care of your son,” another commented.

“Yes,” I began cautiously, knowing that one of the students in the class also has autism. “Remember, I told you that he has autism and needs my help because he can’t do some things by himself.” Some of them showed signs that they recalled what I had already told them about Alex and nodded knowingly; some of them looked at me sympathetically.

Trying to come up with a simple way to summarize what our life is like, I told them, “He’s kind of like a giant five-year-old.” That seemed to satisfy their need to know, and the bell rang to end the class. In many ways as their teacher I play the same role that I play as the mother of an adult son with autism––caregiver. I loan them pencils they have forgotten to bring, give them bandages for wounds real and imagined, listen to them tell their worries and accomplishments, and most of all, make them feel safe and nurtured.

While I think being able to take care of others is one of my strengths, I also need to remember to take care of myself. This week, I read an article online entitled “10 Signs of Caregiver Stress” and felt fortunate that now I rarely suffer from any of the symptoms: depression, withdrawal, anxiety, anger, loss of concentration, changes in eating habits, insomnia, exhaustion, drinking or smoking, and health problems. [To read this article, please click here.] Because Alex has improved over time, he requires less care from us, and we have learned to cope with the everyday stresses of taking care of a child, and now an adult, with autism.

This article also provides helpful tips in coping with the stressors associated with caregiving, offering fourteen strategies for controlling stress. This list of suggestions includes seeking help in the form of respite and health care resources, asking for financial help, joining support groups, and finding caregiver resources. In addition, the list recommends that caregivers take care of their own health through exercising and regular checkups. The majority of the list, however, focuses upon dealing with mental stressors and offers excellent suggestions for coping. To keep from becoming overwhelmed by the demands of caretaking, the need to prioritize, make lists, and establish daily routines––all of which I find extremely valuable––is emphasized. Other recommendations include keeping in touch with friends and family while also making time for oneself and recognizing the need to say no to some requests. Moreover, taking time off from a job may be required to give the time needed to balance caregiving and taking care of oneself.

Probably the most useful suggestions from this article included those regarding how to shape thinking as ways to cope with stress. Strategies recommended include the following: setting realistic goals, identifying what can and cannot be changed, forgiving oneself for imperfections, and thinking positively while keeping a sense of humor. I know that all of these strategies have helped me cope with the stresses autism has brought into our family life. I also know that when I forget these suggestions, I feel overwhelmed, trying to do the impossible, being too hard on myself, and taking things entirely too seriously. Additionally, I would add prayer as the most vital coping technique, for praying always puts life into perspective for me and eases my worries, bringing a sense of calm and peace.

Truly, caring for a loved one with a disability demands mental and physical energy and can overwhelm the caregiver. However, I sometimes find lately that Alex and I switch roles, as he is also learning to care for me. Yesterday, I found myself frustrated by a seemingly ordinary circumstance, and Alex was able to put the incident into perspective for me, instead of my doing that for him. We were supposed to have a new clothes dryer delivered between 12:30 and 2:30 in the afternoon, but as the day wore on, clearly the delivery was not going to happen within the time frame we had been given. Although we were hoping for an early delivery so that we could go to a basketball game as a family, that was not to be. Even though I’m sure that Alex was disappointed about not going to the game, he never complained or got upset about the change in plans.

When the delivery truck finally arrived around 4:30, Alex was a little nervous about how the late installation of the dryer would impact his precious dinnertime, telling me he was “very hungry.” I handed him a couple of gluten-free/dairy-free cookies to tide him over until we could have dinner, and he was satisfied. Because we had to be home to give out candy to trick-or-treaters starting at 5:30, our original plans to go out to dinner at a restaurant were also cancelled. Again, Alex was disappointed, but he remained pleasant and never complained about the changes caused by the delayed dryer delivery.

After being annoyed most of the afternoon waiting for the delivery guys, their arrival further irritated me because they did not properly install the dryer and told us we would have to wait for someone from the service department to fix the problems. I think they were in a big hurry because they were running late, so they didn’t bother to put the leveling feet on the bottom of the dryer, which means the door won’t stay open for loading clothes, and they didn’t hook up the vent in the right place, so we can’t shut the door to the laundry closet because the dryer is sticking out too far. As my mother would say, “It was a real disappointment.”

On the positive side, the dryer does work, so I tried drying a load of clothes yesterday evening. Alex with his exceptional hearing noticed the quiet hum of the dryer and asked me what that sound was. I explained that it was our new dryer, and he smiled, commenting that it had a deeper sound than the old one. Of course, the reason why we got rid of the old one was that it sounded like it was grinding gravel, so this truly was a big improvement. As I watched Alex amused by the gentle sound of the new dryer whose delivery had caused so much annoyance that day, I realized that he had the attitude I needed. Instead of being upset that the delivery had not gone as I’d planned, I was fortunate to be able to have a nice new clothes dryer, one that had a pleasing sound. All of the other details will be resolved, and there was nothing more we could do to fix them until next week. Despite all the irritations and changes in plans, Alex had remained calm and seen the bright side of the situation, and he showed me that I needed to do the same. I’d like to think that he learned that from me. Maybe I was wrong in the way I explained Alex to my students; maybe it’s not just that I take care of him but that he also takes care of me. More importantly, Alex and I know that God takes care of us as the ultimate caregiver, helping us cope with all issues big and small.

“Give your burdens to the Lord, and He will take care of you. He will not permit the godly to slip and fall.” Psalm 55:22