Sunday, January 25, 2015

Making Good Choices

 
When Alex first began behavioral therapy, the primary goal was to teach him to deal with his anxiety and aggression. However, as he has learned to manage these issues, his behavioral therapist has shifted the focus to helping him improve his social skills, a common difficulty for people with autism. To teach him appropriate ways to interact with others, we practice at home by discussing how he should behave and by using social stories so that he knows what he should and should not do. Moreover, we give him opportunities to practice what he’s learned by taking him to public places, such as restaurants, stores, and concerts. During these outings, we have been pleased that Alex demonstrates that he has learned well the lessons his social stories have taught. On the other hand, I have been astounded by the rudeness of some of the people we encounter out in public. While my temptation has been to say, “My son has autism, what’s your excuse?” I realize that they have not had the benefit of therapy that has taught him to interact appropriately. Consequently, I’d like to share some of the social skills lessons for those who could benefit from what Alex’s behavioral therapist calls “Making Good Choices.”
USE YOUR CALM DOWN SKILLS

Because Alex can become anxious and overwhelmed in certain situations, he needed to learn techniques to help calm him so that he doesn’t have meltdowns. He can listen to music, do deep breathing exercises, and/or count to ten in various languages (English, Spanish, French, German, and Turkish) to help him settle down. Although he may need to be reminded about these techniques when he’s upset, Alex can use them effectively to manage his anxiety. Last week, we encountered someone who could also benefit from these calm down skills when we were going with Alex’s behavioral therapist, Jennifer, for our weekly outing to practice social skills. As we approached the fast food restaurant where we were headed, I saw a fire truck and ambulance with flashing lights blocking our path and knew we would have to take an alternate route. Apparently, my action angered another driver who didn’t see why I had to turn, and I could tell from his facial expressions and from my limited lip reading skills that he wasn’t happy with me. To make sure I knew he was upset, he gave me the middle finger gesture. As Jennifer observed, “He wasn’t very friendly, was he?” While I put calm down skills to use so that I didn’t return any hostility, I realized that rude man should have been using his fingers to count instead of to insult me. Certainly, he needed some calm down skills so that he could make better choices.
USE YOUR MANNERS

We have worked with Alex to use polite phrases, such as, “Please,” “Thank you,” “You’re welcome,” and “Excuse me,” and he is still mastering saying them at the appropriate times and saying them loudly enough to be heard. However, I’ve noticed that many people who cannot use autism as an excuse also seem to have not mastered these skills. For example, we have practiced with Alex the scenario of saying “Thank you” when someone holds a door open for him, but I have found that some people seem to forget their manners when I’ve held doors open for them and say nothing to me. In addition, we’ve taught Alex to get out of people’s way when we’re in grocery store aisles or waiting in line, but I’m amazed by the people who stroll along, seemingly oblivious or even not caring that they are in someone else’s way. Also, Alex has learned by playing board games to wait his turn and to be ready when it is his turn so that he doesn’t make others wait. Sadly, some adults apparently have not learned this courtesy lesson, as I discovered in Panera Bread the other night when a couple held up the entire line, taking their sweet time to decide what they wanted and then taking unnecessary time to pay for their food, never once apologizing for their rude actions. Without a doubt, these types of inconsiderate people need to use their manners.

DON’T STARE

While Alex still struggles with making eye contact, a common issue found in people with autism, at times he finds something or someone interesting enough that causes him to cast a lingering look. Often, he may find someone’s voice engaging, or he may find children’s behavior amusing, and he watches them in delight. However, we remind him that staring is not polite. Apparently, not all parents teach their children this lesson. The other day, Alex, Jennifer, and I were at Burger King for our Friday social skills outing, and Alex had decided that he wanted to order his food himself. As he struggled a bit to order, the cashier was very sweet and patient with him, but I noticed two teenage girls staring at him and smirking. While my motherly protective instinctive reactions ranged from wanting to smack them to saying sarcastically, “Take a picture, it lasts longer!” to wanting to explain that he has autism, I realized that nothing I could say or do would teach these mean girls a lesson. Fortunately, Alex was oblivious to their rude behavior because he was so busy trying to use his manners. Following his lead, I used my calm down skills and my manners, and I didn’t stare back at them. As much as their behavior was hurtful, I could also feel sorry for them because unlike Alex, they either had not had loving people teach them how to act appropriately, or they were not working as hard as he is at using social skills. Not only am I thankful that Alex is trying to make good choices, but also that he never seems to notice those around him who fail to make those good choices. Despite the obstacles autism has put before him, he keeps striving to become a better person, and that good choice makes us proud.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

Sunday, January 18, 2015

A New Thing

 
As someone who likes to plan things down to the smallest details, I become frustrated when things don’t go as planned or when unexpected events arise, making me feel unprepared and anxious. In raising a child with autism, I have learned that I can make all the plans I want, but at the last minute, things may change suddenly to derail those plans. Consequently, life with Alex has taught me patience and flexibility. Most importantly, I have learned that God’s plans are always better than mine, and I need to allow Him to guide me so that I make the best decisions for Alex.

While waiting two and a half years for a day program that we had thought would be ideal for Alex, we kept hoping that Alex’s name would soon come to the top of the waiting list. As time passed, we sensed that his enrollment would not be imminent, which was disappointing because we thought that was the direction we were supposed to go. Instead, we worked with our case manager to develop an alternative program to help Alex make progress, adding music and recreational therapy and finding an agency that could provide respite care that better suited our needs than the previous agency had. In addition, our case manager found a new smaller day program located less than five minutes from our home for us to consider. While we were waiting for what we thought was the ideal day program, we were going to keep Alex busy and moving forward in developing his skills.

Two months ago the day program finally contacted us to let us know that Alex’s name had come to the top of the waiting list. However, we no longer felt that this program was the best placement for him now. The program we put in place for him as we were waiting, essentially our Plan B, had turned out even better than we had expected. God had led us to the right people who could help Alex. Therefore, we were not going to make drastic changes by setting aside what has been working well just so that Alex could attend the day program. After discussing all the pros and cons with our case manager and Alex’s behavioral therapist who agreed with us, Ed and I believed that turning down the offer of the day program was the right decision.

Although we were a little concerned about closing a door, we discovered that God had opened another door for us. About the same time, the day program near our home offered to teach Alex computer skills on a one-on-one basis. To start, he would go there for an hour one day a week, and he could increase the time and number of days as he acclimated to the new setting. This program sounded ideal because of its flexibility, convenience, and accommodation of Alex’s interests and abilities. However, once again, we were told we would have to wait a while to get this program started. Having waited over two years for the other program and nearly a year to get respite care started from this same agency, I decided that I could wait patiently. I knew that when the time was right, things would eventually fall into place.

Two weeks ago, the new day program contacted me, anxious to get started working with Alex on computers. The person who was arranging the details had just been transferred to the office here in town, and she was eager to get things rolling. Quickly, she arranged training with Alex’s behavioral therapist to learn how to work best with him, and she arranged a meeting with Alex and me to discuss the program she had planned for him and to answer any questions we had. While I was pleased that we finally seemed to be moving forward on this program, I was a little taken aback by how suddenly things were being put into motion after being on hold for a while.

Also, to enroll Alex, the agency needed paperwork showing that he had had a recent physical examination and a TB test. At first, this detail sent me into brief tailspin mode, as I thought we’d have to arrange for Alex to have a TB test and knew that I had no paperwork from his doctor regarding his physical this summer. After a little online research, I found that the Minute Clinic where we’ve taken Alex previously could do a TB test, which set my mind at ease. However, I then discovered that a chest x-ray could substitute for a TB test. Fortunately, before Alex had his wisdom teeth removed in November, he had to have a physical exam, an EKG, blood tests, and chest x-rays to make sure he was healthy enough for anesthesia. Because his regular doctor has reduced his hours, we took him to a new doctor for his physical exam. Fortunately, her practice offers online medical records for patients. After logging on to Alex’s account, I discovered everything I needed for the day program, and I printed out copies of the test results and doctor’s notes. Even though I had been reluctant to take Alex to a new doctor for his wisdom teeth exam, I realized that God had led us to her so that we would be able to access all the information we needed to enroll Alex in the computer class. God knew what we would need in the future and led us in the right direction.

After meeting with the young woman who will be teaching Alex computer skills and feeling positive about how nicely she interacted with him, I’m hopeful that this new addition to his schedule will work well. Of course, we always worry about how he’ll adapt to new situations and new settings, and we hope that he will put to good use the social skills we’ve worked hard to instill in him. As for Alex, he seems really excited that he’s going to be starting computer school this week. While he begins something new, we pray that everything goes smoothly and that this is one more piece of the puzzle that will allow him to reach his potential. In the meantime, we trust God, who made this path smoother by guiding and changing our plans, will lead Alex where he’s supposed to go and will give him the hope and future He promised.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19

Sunday, January 11, 2015

Vulnerability

 
This week U.S. News and World Report published an article online entitled “Is the U.S. Prepared for a Growing Population of Adults with Autism?” with the subheading, “More than 50,000 individuals with autism transition into adulthood each year.” [To read this article, please click here.] Parents of adult children with autism can easily respond to that essentially rhetorical question with a definitive no. The article points out that the majority of the more than 1.5 million diagnosed with autism are currently younger than twenty-two years old, and an “autism tsunami” is predicted as more children with autism become adults and need services. Of course, these services are quite expensive, and the article focuses on the staggering costs for taking care of these adults with autism. While that problem certain merits attention, parents of adult children worry more about how safe our vulnerable sons and daughters will be when we are not around to protect them.

In previous blog entries, namely “Protecting Our Children” (September 14, 2014), “Autism and Law Enforcement: A Safety Crisis” (June 9, 2013), and “Autism and Wandering: A Safety Crisis” (May 26, 2013), I have expressed my concerns about how bullies, wandering to unsafe places, and untrained police officers can pose threats to children and adults with autism, citing incidents where those with autism have been badly hurt and even killed. These news stories remind parents that we must be especially vigilant to guard our children with autism from those dangers, including those who may legitimately perceive them as threats. Because of our children’s impaired social skills, limited language, and tendency to wander, they may unknowingly find themselves in dangerous situations.

Around midnight on Christmas Eve in Greenville, South Carolina, police officers arrested a thirty-four-year-old man with autism walking on the sidewalk after he didn’t cooperate with their questioning. [To read this news report, please click here.] With his limited language skills, he couldn’t answer their questions and didn’t respond to their requests. His impaired social skills prevented him from behaving appropriately, and fear likely caused him to run away from the officers, who shocked him with a Taser and handcuffed him. Certainly, his noncompliant behavior made him seem suspicious and perhaps even threatening. However, after discovering that he has autism, charges were dropped against him. Unfortunately, he will carry that memory of an upsetting experience with the law, but this incident has demonstrated the need for police officers to have training in dealing with people with autism.

This week in Austin, Texas, a young man with autism became upset and ran away from his group home early in the morning. [To read this news report, please click here.] Agitated, he began pounding on doors of neighborhood homes. As he attempted to enter a home, the homeowner shot and killed him, fearing for the safety of his family. While this situation is terribly upsetting for everyone involved, many parents of adult children with autism understand how this could happen. When our fully-grown children become upset, their behavior can become so erratic that anyone would see them as threatening. Sadly, this young man with autism lost his life, and the homeowner protecting his family will have to live with this tragedy the rest of his life.

As these recent news reports demonstrate, the world is a dangerous place for people with autism who cannot communicate well and whose impaired social skills affect their behavior negatively. While parents do everything we can to protect our children and keep them safe, they may find themselves in danger. When I read essays written by parents of young children with autism who celebrate the disability and say that they wouldn’t change a thing about their child and that autism is part of their personality, I shake my head. While we love our children with autism unconditionally, we want their lives to be better and safer, but autism makes them vulnerable to dangers we can’t always keep at bay. Autism is no more a part of their personality than cancer or diabetes or any lifelong affliction that takes away from our children’s lives. Consequently, I continue to pray for a cure for autism so that my child and those like him can live life to fullest, participating in the world instead of being a misunderstood outsider. In the meantime, I also pray that God keeps Alex safe until that healing can occur and that He will guide and watch over him when we cannot.

“See, I am sending an angel before you to protect you on your journey and lead you safely to the place I have prepared for you.” Exodus 23:20

Sunday, January 4, 2015

Gut Feeling

 
Because so much is unknown about autism, parents of children with autism often rely upon what we sense is the right thing to do when we make decisions for our children. We sometimes think of those instincts as gut feelings, and we move forward based upon the adages of “Go with your gut” or “Trust your gut.” Because my faith leads me to believe that God places those feelings in my gut, I trust those instincts when making choices. While we tend to think of the gut in terms of its actual function as a key component of the digestive process as well as its symbolic identity as a part of decision-making, the role of the gut has expanded in recent research.

More specifically, new research indicates that the gut’s microorganisms (such as bacteria), known as the microbiome, significantly impact the brain. In the article “Gut-brain Link Grabs Neuroscientists” published in Nature on November 12, 2014, molecular biologist Sara Reardon explains that research shows that a connection exists between bacteria in the gut and behavioral conditions, such as autism. [To read this article, please click here.]

In 2014, the U.S. National Institutes of Health spent more than one million dollars on new research through its Human Microbiome Project to study the links between the microbiome and the brain. Through this research project, scientists hope to gain insights into how the microbiome affects humans as it both maintains health and causes disease. On November 19, 2014, neuroscientists shared their research entitled “Gut Microbes and the Brain: Paradigm Shift in Neuroscience” at the annual Society for Neuroscience meeting in Washington, D.C., promoting the significance of the brain-gut connection.

As neuroscientists begin to understand how gut bacteria affect the brain, three possible links have arisen. First, the gut bacteria seem to play a significant role in the immune system. Another potential link between the gut and brain is the vagus nerve that connects the digestive tract to the brain. In addition, the production of bacterial waste in the gut may affect the brain. For example, intestinal bacteria produce the important neurotransmitter GABA. Interestingly, children with autism often benefit from taking supplements of GABA, as it has a calming effect upon them.

Research has shown that children with autism tend to have gut microbiomes different from typical children. Specifically, the Nature article references a 2013 study entitled “Reduced Incidence of Prevotella and Other Fermenters in Intestinal Microflora of Autistic Children.” [To read this article, please click here.] This research focused upon analyzing stool samples of children with autism and typical children and found that children with autism tended to have fewer strains of gut bacteria than typical children do. Consequently, these missing strains likely influence their behavior and health. Moreover, the study found that children with autism had significantly lower levels of some strains of bacteria, particularly Prevotella, which is important for digesting carbohydrates and for metabolizing vitamin B1. Considering that many children with autism seem to crave carbohydrates, perhaps this lack of Prevotella causes them to consume carbohydrate-rich diets, trying to extract nutrients from these foods. In addition, children with autism often respond well to supplementation of vitamin B1, perhaps necessary because their bodies cannot metabolize this vitamin from food. By analyzing the gut bacteria, scientists can potentially determine what is lacking and how to address these anomalies.

Additionally, the Nature article refers to the work of Sarkis Mazmanian, a microbiologist at California Institute of Technology in Pasadena. In Mazmanian’s 2013 study, mice with some features of autism, notably gastrointestinal symptoms and stressed, antisocial behaviors, had lower levels of a common gut bacterium, Bacteroides fragilis, than normal. Also, they had higher levels of a bacterial metabolite, 4EPS, in their blood. When normal mice with leaky gut syndrome were injected with 4EPS, which seeped into the body through the intestinal wall, they also exhibited autistic behaviors.

In response to his research, Dr. Mazmanian notes, “That observation raises the possibility that some people with autism could be supplemented with therapies, such as probiotics, that target the gut instead of the brain, which is a much more complex and inaccessible organ.” Hence, this research offers a different approach to autism; instead of focusing upon treating the neurological symptoms, addressing the digestive tract becomes a potential source for healing. Indeed, many biomedical doctors have recognized the gut-brain connection in autism and have implemented treatments to address digestive issues, such as leaky gut and dysbiosis of the digestive tract, through gluten-free diets, probiotic supplements, and antifungal medications.

As we begin a new year, we anticipate what 2015 will bring. Over time, we have seen progress in Alex that we celebrate and appreciate. Nonetheless, we continue to pray for his complete healing, and this new research gives us greater reason to hope that, indeed, Alex will recover what autism has taken from him. In the meantime, I trust my gut and allow myself to be led by God that we will make the right choices so that Alex can be happy and healthy as we wait.

“My child, pay attention to what I say. Listen carefully to my words. Don’t lose sight of them. Let them penetrate deep into your heart, for they bring life to those who find them, and healing to their whole body.” Proverbs 4:20-22

Sunday, December 28, 2014

Repeat the Sounding Joy

 
Yesterday, I read an anecdote written by an outstanding autism mom blogger whom I admire and respect that made me reflect on not only how far Alex has come over the years, but also how much I have learned from time and experience of being an autism mom. In her story, which she asked other parents to share online, she told of recently taking her young son with autism to get a haircut at a salon. When he began to squirm, the stylist told her that she could not cut his hair safely because she was afraid she might cut him. His mother explained that he has autism, and the stylist refused to cut his hair. Undeterred, the mom took her son to another salon, where a stylist successfully cut his hair and kept her son calm in the process. However, she was still angry that the first salon turned them away, citing discrimination because her son has autism and noting that parents of children with autism should not have to tolerate this kind of treatment.

The comments on Facebook that followed her story and response to what happened basically fell into three categories. Most people who commented were fellow autism parents who shared her anger and demanded action against intolerance toward children with autism. A few defended the actions of the first stylist, noting that she honestly explained her fears of hurting the boy. The third group shared their own bad experiences with their children’s haircuts that led them to find more patient stylists or more often to cut their children’s hair themselves. Had I made a comment, I would have fallen into that third category, the walk-away-and-move-on-with-life autism parent. After a few bad experiences with having Alex’s hair cut at the barbershop (through no fault of the barbers, who handled him remarkably well) when he was young and had sensory issues, I decided to learn how to cut his hair myself. Perhaps because we were not refused service, I didn’t feel the righteous indignation she described. Moreover, I tend to avoid confrontation and would prefer to walk away from uncomfortable circumstances than to make a point.

As I considered the story of the mom who wanted everyone to know that a stylist who could not cut her son’s hair denied him a haircut, I wished that she had focused on the positive outcome instead. Certainly, when anyone rebuffs our children, we feel anger that someone treats our children badly. As autism parents, we feel perhaps even greater indignation because our children’s disability makes their lives more difficult. On the other hand, over time I have found that people who walk away from our children are a blessing. In our experience, we have found that as professionals who worked with Alex have left for various reasons, their replacements were even better because they provided what he needed at that time. Those who cannot or do not want to work with our kids have no place in our lives. When they close the door, we look for the windows, the opportunities to find better alternatives. For her, she found a stylist who was willing and able to cut her son’s hair. For me, I decided to master a new skill, learning to cut Alex’s hair myself, which has made our lives easier and saved us a few bucks in the process. In addition, this tackling of something I didn’t think I could do developed my confidence so that I could take on other tasks, such as learning to give Alex vitamin B12 injections. Over the years, I have learned that nothing is wasted in life, or as the last line from one of my favorite movies An Unfinished Life wisely states: “And it looked like there was a reason for everything.” Often, the disappointments lead us to circumstances even better than we could imagine.

Several years ago, we realized that Alex couldn’t handle celebrating Christmas with the extended family. Although we tried everything we knew to make the family gatherings less overwhelming for him by giving him time and space away from the group, he found the experience upsetting. The last Christmas we celebrated as an extended family, we left with Alex and me both in tears, he in sensory overload and I in emotional overload that he was so upset. After that, we decided to celebrate Christmas at home with just the three of us, quiet and peaceful, yet disappointed that we could not be with the rest of the family. To ease the sense of loss, family would come to visit us in smaller groups that Alex could tolerate. While this compromise was the best solution for our circumstances, we hoped that someday we could celebrate with a family gathering on Christmas, as most families do.

Thanks to healing from medication, therapy, time, and answered prayers, Alex was finally able to enjoy a family gathering on Christmas this week. Instead of being overwhelmed by all the activity inherent when fourteen people and a dog are in the same room, Alex was happy to be with people he loves and who love him. Not only did he behave appropriately, but he also was content to be in a situation that used to upset him. After all these years, we finally had the family Christmas most people take for granted. While I was tempted to mourn for the lost years, wistful for what we had missed and what autism had taken from us, I focused instead on gratitude for what we had been given. Moreover, this Christmas has been even sweeter because we had to wait for that “typical” Christmas denied to us for so long. What was once bitter is now only sweet, and our joy is an even greater blessing, making us look ahead to the new year with anticipation and expectation that 2015 will be our best year yet.

“Instead of shame and dishonor, you will enjoy a double share of honor. You will possess a double portion of prosperity in your land, and everlasting joy will be yours.” Isaiah 61:7

Sunday, December 21, 2014

ABLE Act: An Early Christmas Gift

 
This week Alex and many other Americans like him who have developmental disabilities received a wonderful early Christmas present. The passing of a new law known as the ABLE (Achieve a Better Life Experience) Act of 2014 will allow parents to save money for their children who have disabilities without fear of losing benefits. The purpose of this act is to help and encourage families to save funds for their loved ones with disabilities to help provide for their needs. These funds would supplement any government disability funding without fear of losing these important resources. Up until this time, parents have been discouraged from establishing savings accounts for their children with disabilities because these children cannot have their own assets totaling more than $1000 or $2000, depending upon government agency regulations, without fear of losing disability benefits, such as Medicaid or Social Security’s Supplemental Security Income (SSI).

First introduced in 2008, ABLE was promoted by parents of children with special needs as a program similar to those for parents wanting to save money for their children’s college funds. The bill in its current form was introduced last year on February 13, 2013, and was sponsored by Representative Ander Crenshaw, a Republican from Florida. The bill overwhelmingly passed in the U.S. House of Representatives on December 3, 2014, with a vote of 404-17. As a bipartisan effort, Senator Bob Casey, a Democrat from Pennsylvania, and Senator Richard Burr, a Republican from North Carolina, sponsored the bill in the U.S. Senate. This week, on December 16, 2014, Alex’s twenty-third birthday, the Senate also overwhelmingly passed the ABLE Act with a vote of 76-16. On Friday, December 19, 2014, President Obama signed the ABLE Act into law. Not since the enactment of the American with Disabilities Act (ADA) of 1990 has there been such significant legislation enacted to benefit people with disabilities until the signing of the ABLE Act this week.

Essentially, ABLE amends the Internal Revenue Tax Code to allow the use of tax-free deferred savings accounts for individuals with disabilities. Families may use these funds—up to $100,000—to cover expenses for education, housing, transportation, and medical expenses. Under the law, the disability must have been diagnosed before the age of 26, and the child must receive Supplemental Security Income through Social Security. Previously, parents were discouraged from putting aside financial resources for their children with disabilities, fearing that their children would lose important disability benefits. In addition, parents had to make sure their children had limited resources of their own. To ensure that their children would not lose benefits by inheriting assets, parents had to make certain that their estates would not go directly to the children with disabilities but to special needs trust accounts instead.

Because we only recently became aware of the problems of Alex having his own financial resources eventually, we have always set aside money in savings with the idea that he would need money in the future. Knowing that Alex can have limited finances in his own name, we have made certain that his savings account never has more than the maximum the state will allow him to have without losing his benefits that pay for his therapies and any supports he may need in the future. However, Ed and I have also saved money for Alex’s future needs that the ABLE Act will allow us to provide for him securely. As parents, we have a responsibility to take care of our children the best we can, and the ABLE Act permits us to provide for our children with disabilities without penalizing them or us for doing what is right, saving money that can be used to meet their needs. Along with our many blessings we have enjoyed this past year, we are thankful that the American politicians saw the needs of families raising children with disabilities and passed the ABLE Act into law, which will benefit so many families now and in the future.

“And this same God who takes care of me will supply all your needs from His glorious riches, which have been given to us in Christ Jesus.” Philippians 4:19

Sunday, December 14, 2014

Twenty-Three

 

In two days, Alex will celebrate his twenty-third birthday. Twenty-three years ago, we were anticipating his birth, but we thought he would not arrive for nearly a month. Of course, predicted due dates meant nothing to him, and he was our early Christmas gift in 1991, making his entry into the world three and a half weeks early. Twenty years ago we were enjoying Alex’s toddler years, a little concerned about some delays and quirks but assured by professionals that he was fine. We would not receive a diagnosis of autism that would impact our lives for another year.

Three years ago, in the midst of major turmoil that would require intensive intervention for Alex, we could not see ahead to the peaceful and content existence we now savor, thanks to therapy, medication, and healing. When we look back over all the ups and downs of the past twenty-three years, three constants remain—our faith in God that sustained us, our hope that Alex would get better, and our unconditional love for each other. In tribute to Alex, our gift from God, I offer an adapted version of Martina McBride’s beautiful song, “In My Daughter’s Eyes, ” with lyrics by James Slater.


“In my son’s eyes I am a hero. I am strong and wise, and I know no fear. But the truth is plain to see: he was sent to rescue me. I see who I want to be in my son’s eyes.”


“In my son’s eyes everyone is equal. Darkness turns to light, and the world is at peace. This miracle God gave to me gives me strength when I am weak. I find reason to believe in my son’s eyes.


“And when he wraps his hand around my finger, oh, it puts a smile in my heart. Everything becomes a little clearer; I realize what life is all about. It’s hanging on when your heart has had enough. It’s giving more when you feel like giving up. I’ve seen the light; it’s in my son’s eyes.”


"In my son’s eyes I can see the future, a reflection of who I am and what will be. Though he’ll grow and someday leave, maybe raise a family, when I’m gone, I hope you’ll see how happy he made me. For I’ll be there in my son’s eyes.”

While being Alex’s mom has taught me many important lessons, one stands out as I look back on the past twenty-three years. Although we don’t know what the future holds, we do know who holds our future, and we are thankful that God holds Alex and us in the palm of His hand. Happy Birthday to our precious son!

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

Sunday, December 7, 2014

Advent: Waiting, Anticipating, Preparing

 
This week, I have been thinking about Advent, the Christian observance leading up to Christmas, the celebration of Christ’s birth. While the source of the word Advent comes from the Latin adventus meaning arrival, these four weeks leading up to Christmas are often seen as a time of waiting, anticipating, and preparing. Often the busy season of activities, such as shopping, wrapping gifts, and decorating, distracts us from the primary focus of celebrating the birth of Christ. As I watch Alex count down the days on his various calendars to his upcoming birthday and Christmas, I notice that he primarily anticipates his favorite days of the year, knowing that I will take care of preparing for the celebrations. He trusts that I will make certain those days are as special for him as he imagines that they will be. Fortunately, he has learned patience over time, which makes the waiting easier and the anticipating sweeter.

Like Alex, I have learned patience over time, which is a lesson autism has taught me. Because Alex’s development has not followed the typical patterns and timelines, I have had to trust that milestones will eventually happen. Waiting often becomes a way of life for us, whether it be sitting in waiting rooms for doctors and therapists, waiting for paperwork to be processed, or waiting for Alex to finally master a skill. One blessing of this waiting is that when the appointed time, the answer, or the accomplishment finally arrives, the celebration is even better.

For two and a half years, Alex was on a waiting list for an excellent day program for adults with disabilities. When we first visited the facility and decided that they could offer him exactly what he needed, we prayed that we wouldn’t have to wait long before he could enroll there. However, various circumstances slowed the process, and we felt frustrated that his placement was delayed. Although we were told that he would be considered after a major construction project was completed that expanded their program, another year passed with no word that he would be enrolled. In the meantime, I knew that sitting around waiting to hear from them was wasting time, and we set out to make sure Alex was engaged in various programs that helped him develop his skills by adding recreational and music therapy to the behavioral therapy that was already in place. We filled his schedule with activities not only to keep him busy and active but also to prepare him better once the time came for him to go to the day program.

Last month, the day program for which we had been waiting called to let us know that Alex’s name had finally come to the top of the list, and he was eligible for enrollment. While we should have been celebrating an end to a long wait, we felt conflicted instead. Although the day program offers many opportunities, Alex is thriving under the program his case manager, therapists, and we have put together while we were waiting for an opening in the day program. Besides not wanting to make changes when things are going so well, after prayerful consideration and consultation with our trusted team of professionals who work with Alex, we decided that the day program we had wanted so badly for Alex at one time was not right for him at this time. Consequently, we politely thanked the agency and declined their offer, hoping that another client who has been waiting a long time like we have will be delighted for the chance to enroll. While we were waiting and anticipating, we were also preparing, and these preparations led us away from what we had originally planned to something even better for Alex.

Similarly, we spent a great deal of time waiting for respite services for Alex. After waiting several months for services from one agency, we decided that their program wasn’t ideal for what we needed. They required a minimum of four-hour blocks of respite and preferred that service take place at their respite care facility instead of in the family home. For us, the longer blocks of time and taking Alex to a place twenty minutes away wasn’t ideal, so I began searching for other options that would work better for us. After seeking other parents’ input and finding an agency less than five minutes away that offers two-hour blocks of respite care time in our home, we decided to switch respite care providers. However, our waiting was not done yet.

Although the new agency eagerly welcomed us and moved along the paperwork quickly, assigning a respite care worker for Alex did not happen as rapidly. Despite prompting from our case manager, the person in charge of finding a respite care worker failed to provide one. As we waited for months, I kept telling our behavioral therapist that I was in no hurry because I knew that the right person to work with Alex would come along when the time was right. Finally, after nearly a year, the person who was supposed to assign a respite care worker left that agency, and a new employee was assigned to Alex’s case. Immediately, she found an ideal respite care worker for Alex—after we had waited nearly a year with that agency and over a year and a half with the previous agency. As I had believed, God had selected the right person for Alex. She is about his age, has a calm and sweet personality, shares many of his interests, and understands autism well because she has family members who have autism. While we waited patiently for the wrong people to move out of the way and the right people to move into our lives, Alex was preparing by improving his social skills so that he could interact with his respite care worker and enjoy their weekly visits, which has certainly made the wait worthwhile.

Through our experiences with waiting for what’s best for Alex, we have learned to anticipate that everything will work out in the end. Sometimes plans change, and other times, we must anticipate that all the pieces will fall into place eventually. In the meantime, we keep ourselves busy and moving forward by preparing for what is to come, knowing that God has a good plan for Alex. With that in mind, we keep waiting, anticipating, and preparing for Alex to continue making good progress and to continue healing, all the while thanking God for all He has done to bring us this far.

“The Lord will work out His plans for my life—for Your faithful love, O Lord, endures forever. Don’t abandon me, for You made me.” Psalm 138:8

Sunday, November 30, 2014

Reflection

 
As December begins tomorrow, many people will begin the countdown to Christmas—if they haven’t already started—with Advent calendars to keep track of the days left until December 25th. Since Alex loves numbers and calendars, Advent calendars hold a special place in his heart. In fact, we have two Advent calendars to count down the days: a wooden one with numbers that must be changed daily and a traditional German one with doors that open to reveal chocolate candies each day. In addition to our Advent calendars, Alex has started another countdown and has marked the days on our kitchen calendar. Like my seventh grade students who are ten years younger than he is, Alex is eagerly anticipating his birthday, and he started counting down the days a month in advance. While my students look forward to their thirteenth birthdays, marking their entrance into being teenagers, Alex is even more excited than usual about his birthday, which will be his 23rd. Every day, he excitedly comes to tell me how many days are left until his birthday on December 16th.

While Alex looks forward to turning another year older, I must admit that at times I would like the clock to stop. The older he gets, the more I fret about his future. When he was younger, I had goals in mind about what he would be able to accomplish by certain ages. Although some milestones eventually arrived on a delayed schedule, others still wait to be accomplished sometime in the future. While most young adults his age would be finishing college and starting careers, Alex still relies upon Ed and me for his basic needs. Certainly, he has made wonderful progress, which we appreciate and celebrate, but he still has a long way to go before he can be independent. Of course, Alex doesn’t worry a bit about life, and his unwavering faith reminds me to hold fast to the promise of Jeremiah 29:11: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” I know that God has plans for Alex, but I still wonder what the future holds for him and what his divine destiny will be.

Several years ago, I was blessed to find an online ministry known as Children of Destiny, started by Christian ministers Jack and Rebecca Sytsema. After two of their sons were diagnosed with autism, they began writing daily e-mail devotionals with scriptures to support parents of children with autism, who, like them, needed encouragement and spiritual guidance. [To view Children of Destiny, please click here.] This online ministry has grown and helped many people during its twelve years of existence. Over the years, their devotionals have repeatedly reminded me to have faith when times looked bleak and to praise God when prayers were answered. Describing their family’s life with autism, the Sytsemas note, “While each intervention has helped them [their sons with autism] come to new levels of success, we firmly hold to the belief that the most powerful intervention we have brought into our sons’ lives has been to give them over to God and allow Him to order our steps.” Indeed, that surrendering our children to God proves the hardest, yet the most important step of faith we parents of special needs children must do. Moreover, the Sytsema’s declaration that these children with autism do have a special destiny, despite what limitations autism has placed upon them, reminds us how much they have to offer the world.

Last week, after I posted my blog entry about Alex’s positive interaction with a kind grocery store clerk, I received very positive feedback about that story from friends and family, who were touched by the sweetness of Alex and his “new friend.” While I never want Alex to be a bother to other people, I sometime forget what a blessing he can be to people other than Ed and me. We see the goodness and kindness behind his awkward social skills, but we wonder if others recognize his sweet soul, as well. After reading the blog entry, my cousin Amy reminded me in a loving note that Alex does, indeed, have much to share with others: “I hope you know what a blessing Alex is and the joy he brings to others. I say share your sweet wealth.” Similarly, another autism mom friend thoughtfully wrote to me in response to the story, “Alex touches more lives than he will ever know.” Their encouraging words made me realize that Alex is fulfilling God’s destiny for him. Maybe his job right now is to reflect God’s love through his joy for life, his love for people, and his trusting faith and abiding hope that everything will be all right in the end.

As Alex happily counts down the next sixteen days until he turns twenty-three, I need to put aside the disappointments that his life hasn’t turned out as I had planned and to share in the joy he finds in the simple things that others in their busy lives can often miss. Moreover, I must stop thinking about the things Alex can’t do yet and remember that God has His own countdown that I must trust will be the right time for everything. In the meantime, God keeps Alex busy with His own tasks, those far greater than I would have assigned, and certainly much more valuable because they truly reflect God’s glory.

“And all of us have had that veil removed so that we can be mirrors that brightly reflect the glory of the Lord. And as the Spirit of the Lord works within us, we become more and more like Him and reflect His glory even more.” 2 Corinthians 3:18

Sunday, November 23, 2014

The Kindness of Strangers

 
“Good Ways to Get People’s Attention” is one of the social stories Alex’s behavioral therapist has used to improve his social skills. Because words don’t come easily to Alex, he may resort to inappropriate behaviors, such as suddenly grabbing someone’s arm to get that person's attention. Instead, we needed to teach him socially appropriate ways to interact, especially since his stature at six feet tall could make him appear threatening to those who don’t know him. Not only does he read the story aloud repeatedly, but Alex also practices the skills detailed in the story so that he knows how to act when he is around other people. Specifically, the social story tells him that he can wave, raise his hand, shake hands, give a high five, or say, “Hi” or “Excuse me.” After repeating this exercise many times, Alex has made great progress, as we have seen him do what he has been taught, tapping my shoulder when we are in the car, raising his hand during a meeting with his team of support staff, and offering a high five to his therapists when they come to see him.

Last evening, as we were shopping at the grocery store for Thanksgiving dinner items, Alex put these skills to good use and was rewarded for his efforts. After collecting our list of groceries, we headed for the self-check line and were greeted warmly by the store clerk who was supervising the self-check registers. Apparently, Alex was impressed with her friendliness because he suddenly left our cart of groceries that he had pushed through the store, walked over to her, smiled, and tapped her gently on the shoulder, just as he had been taught in the social story he knows by heart. However, he didn’t know what to say to her once he had her attention, so he just smiled.

Even though he had done nothing wrong, Ed and I immediately sprang into action, not knowing how she might react to his gesture and not wanting him to bother her. Ed apologized and led Alex back to the grocery cart, and I noticed that the clerk had followed them. I asked Alex, “Did you want to shake her hand?” He lifted his left hand (as he always does, offering the wrong hand for a handshake), but she took his right hand in hers, giving him a nice handshake, which made him smile and seemed to please her.

Then Ed, still trying to smooth over a situation that could have been awkward, told Alex that the next time, he could just say hello instead. The kind woman then put her arm around Alex’s shoulder and said sweetly to him as though they were old friends, “That’s okay, anytime you see me, you can tap my arm. You are so precious.” What could have been an uncomfortable incident became a pleasant one because she reacted very kindly, understanding that Alex intended no harm; he just wanted to interact with her.

Before we left, I thanked her for being so kind to Alex, but she assured us that it was her pleasure, wished us a Happy Thanksgiving, and made a special point to say goodbye to Alex, who was still smiling. As we took the groceries to the car, I felt teary that a stranger could be so kind to my son and make him so happy. Although I suspect she recognized that Alex has autism, she responded with warmth and kindness instead of discomfort and avoidance. I hope that she was as blessed by this brief encounter as we were.

As we celebrate Thanksgiving this week, I’m thankful for the many blessings in our life:  our faith, family, and friends that sustain and bless us, the healing we have seen in Alex, and for the kindness of strangers who take the time to interact with Alex. To the pretty lady at the grocery store with the warm smile and kind heart, thank you for making Alex’s day. You should know that Alex has an innate sense for people who are especially nice, and he is drawn to them. You must be one of those people because he felt the need to reach out to you and get your attention. By responding to him with genuine affection, you have gained a new friend. That night after you called him “Precious” and told him that he could tap you on the shoulder whenever he saw you, he asked what your name was. Overwhelmed by my fear of your reaction to him as well as by your sweetness to him, I didn’t think to ask your name. However, we hope to see you again, and you should know that a young man with autism now includes you in his prayers as his “new friend” whom he wants God to bless. Indeed, I pray that you will be blessed for the kindness you have shown. While you dismissed it as “no problem,” to us it meant a great deal, and we are thankful.

“…And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8

Sunday, November 16, 2014

Decisions, Decisions

 
Last evening during a Moms’ Night Out with two of my younger friends, who are currently on maternity leave, we found that the majority of our conversation revolved around our children. With our kids safely at home with their fathers, we were relieved of mommy duty for an hour and a half, but still foremost in our minds and hearts was the well being of those children. We discussed feeding, sleeping, and keeping our kids healthy, along with the dilemma of returning to work or not. Our shared devotion to our children binds our friendship now even more than our initial bonds of a shared workplace. We can support and understand each other because we are in similar situations, and a primary concern we share as mothers is making the right decisions for our children.

Of course, my friends are new to motherhood and responsible for the care of infants while I have been parenting for nearly twenty-three years and am still responsible for an adult, which brings challenges not unlike those my friends are currently facing. Like them, I must make sure Alex eats properly, gets plenty of sleep, and gets proper medical care. Most parents of young adults have relegated these decisions to their independent children, but autism impairs Alex’s ability to make important choices on his own. Sometimes I must even guide him in rather simple ways, such as telling him that bologna, orange juice, and cookies are not a good snack combination, especially right before bedtime.

On one hand, I’m glad that we still have the power to protect Alex that parents of other children his age do not. He can’t drive a car, so we don’t have to worry about him driving recklessly. He isn’t in college, so we don’t have to be concerned as to whether he’s keeping up with his studies or not. He doesn’t date, so we don’t have to worry about someone breaking his heart. While keeping him safe is nice, I wonder if he misses the rites of passage other people his age enjoy.

On the other hand, since Alex can’t make important decisions for himself, we feel a tremendous sense of responsibility to make the right choices for him. In true concerned mother fashion, I often find myself questioning if we’re doing the right thing. In some aspects, I feel totally confident, such as managing his disability funds. Appointed by Social Security and the state as Alex’s authorized representative, I allocate his money as carefully and fiscally responsibly as I manage our own, finding the best deals and never wasting a cent. Legally assigned by Alex as his health care representatives, Ed and I make sure that Alex gets the best medical care to keep him healthy, just as we always have throughout his entire life.  However, when it comes to deciding what support services he needs, I find myself weighing all the options, trying to determine what is best for him, hoping to make him more independent in the long run.

Indeed, realizing Alex’s need for greater control of his own life, I have tried to give him options so that he can learn to make decisions. Even in seemingly small choices such as whether to wear the blue shirt or the red one, what to eat for lunch, or what to watch on television, I want him to communicate what he wants. When presented with a choice, trusting my judgment, he will often ask, “Which would be best?” After reassuring him that no answer is wrong, he can usually pick one of the choices.  Sometimes he tells us that it’s “a tough decision,” weighs his choices, and then decides. However, I understand his dilemma because I often wonder myself which would be best.

In the times when I doubt myself, I have to look at the successes to remind myself that we do what’s right for Alex. After his recent oral surgery went amazingly well—much better than anyone could have anticipated—we looked back on all the steps we made along the way to get to that successful recovery. Not satisfied with the recommendation by Alex’s dentist to wait to remove his decaying upper twelve-year molars until they were bothering him and by his recommendation of an oral surgeon with a poor reputation, I decided to take him to my dentist, whom I trust completely. He recommended removing Alex’s wisdom teeth at the same time and referred us to an experienced oral surgeon. The skilled oral surgeon not only successfully removed the teeth that were causing problems, but he also took various precautions to prevent complications, namely pain, bleeding, swelling, dry sockets, and infection. Consequently, Alex came through a rather complicated procedure without any problems. Moreover, he was deemed a “great patient” by the oral surgeon’s staff. Because everything went smoothly, Ed and I were confident that we had made all the right decisions for Alex.

When we must weigh options for Alex, Ed and I discuss all the potential benefits and problems, and we consider how well we know Alex and how he will likely respond. Along with relying upon our own careful considerations, we rely even more heavily upon prayerful consideration. We know that God has a plan for Alex, and when we aren’t certain what is best for him, God knows. In times when I find myself puzzled as to what choices we should make, I pray for guidance, and we have an amazingly clear sense of what we should do. That Ed and I always reach the same conclusions, guided by our shared devotion to Alex and our shared faith in God, makes moving forward with these choices less daunting.

This week, Alex’s quarterly meeting with his support team convenes, and we will discuss plans for the next three months regarding his services. In preparation, Ed and I have considered various available options, Alex’s progress and his current state, and what we believe will help him most. At this point, we feel that the best way to move him forward is to make no changes because he is doing well with the combination of behavioral, recreational, and music therapies, along with spending one afternoon with his respite care “friend,” and with the various family outings Ed and I plan for him. While others may question our choices, we know that our primary motivation is doing what’s best for Alex, and we also know that God, who loves Alex even more than we do, guides our decisions. As a result, we feel confident in knowing “which would be best.”

“Wise choices will watch over you. Understanding will keep you safe.” Proverbs 2:11

Sunday, November 9, 2014

Healing

 
Last week began in trepidation and ended in celebration. Last evening as the three of us had a snack at one of our favorite restaurants with Alex happily downing fries and orange drink, Ed commented that we never would have guessed that he would be doing so well three days after oral surgery. Despite having eight teeth—four wisdom teeth and four twelve-year molars—removed on Wednesday morning, Alex has been remarkably congenial and energetic. Prior to the surgery, Ed and I thought that, at best, Alex would want to lie in bed for several days to recuperate. Our greater fear, though, was that he would be in such pain that he would be nasty and possibly even aggressive, angry that we had put him through a procedure that made him suffer. However, God watched over us, brought Alex safely through the surgery, and spared Alex and us pain, a true blessing. Moreover, with the removal of those damaged and impacted teeth, we are seeing significant improvements that we never anticipated.

Although Alex has never complained about his back teeth bothering him, his dentist told us in August that he needed to have the upper twelve-year molars removed because they were decayed. When we took him to our dentist for a second opinion, x-rays indicated that his impacted wisdom teeth were damaging the roots of the twelve-year molars. Consequently, our dentist recommended removing all eight of those back teeth at the same time, and he referred us to an experienced oral surgeon, who concurred with that treatment plan. The removal of the twelve-year molars created openings to remove the wisdom teeth, which were totally “bone impacted.” In addition, he felt this oral surgery should be done at an outpatient surgery center with an anesthesiologist putting Alex under general anesthesia. While we felt bad that Alex would have to undergo this procedure, we agreed that it must be done and moved forward to schedule the surgery. As Alex pointed out to me, this was his first surgery, which shows how well God has protected him in his nearly twenty-three years.

After reading through all the possible complications and things that could go wrong during the oral surgery (including pain, bleeding, infection, jaw fracture, permanent numbness, and even death), I signed the consent forms as Alex’s legal health care representative and prayed that none of these potential problems would occur. However, I also remembered my own wisdom teeth removal when I was in my teens as a rather unpleasant experience with pain, swelling, and generally not feeling well for about a week, none of which I shared with Alex, not wanting to incite his anxiety. Because Alex has had positive experiences with doctors and dentists and lab work, he views them as a grand adventure, and this was no different. Even having to get up in the middle of the night, since we had to leave at 4:00 A.M to register at 4:30 A.M. for his 5:30 A.M. surgery, didn’t faze him. He simply told me to wake him up at 3:30 A.M. by reminding him, “It’s twelve hours to Jeopardy!” When I fulfilled his request, he rolled over, gave me a sleepy grin, and awakened without any complaints. We were off to a good start.

In the pre-operation room, two sweet nurses helped us prepare him for surgery and even let him weigh himself when he asked if they had a scale. When he had an IV inserted, he calmly handled the procedure and watched as the nurse put the IV in place. When she injected medication to numb his hand—the worst part of the process, she warned him—he began to wince, and I told him to pretend he was blowing out birthday candles, a trick I learned along the way to distract him and ease pain. He complied, and all was well. The nurse commented that he was an excellent patient, which made us quite proud, but we were even prouder of how calmly Alex was handling himself before surgery.

As Ed and I sat in the waiting room during the hour-long surgery, I alternated between praying and trying to read and distract myself from worrying about Alex. At one point, I looked across the room of the Catholic hospital to see a plaque with a cross that read, “God always keeps his promises.” This reminder comforted me and gave me hope that Alex would, indeed, be safe in God’s hands. I also remembered that many family members and friends were praying for us. Thankfully, Alex came through the surgery beautifully with no complications, and we were glad to find out that Alex was calm both before and after the surgery. When we went to see him in the recovery room, he had gauze stuffed in his mouth and was sleepy, but his coloring looked quite good, and he seemed no worse for the wear. In fact, he kept trying to tell us something. The nurse, who kept commenting on what a sweet boy Alex was, said that he kept repeating some phrase that she couldn’t decipher with all that gauze packed in his mouth. Because of his articulation issues, Alex’s speech isn’t always clear on good days, but the swollen mouth and gauze made understanding him even trickier. The kind nurse, Ed, and I kept trying to figure out what Alex was telling us with no success. Fortunately, he wasn’t upset that we didn’t understand, and when we were wrong in our guesses, he just calmly repeated the mumbled phrase again. Finally, I figured out what he wanted. “Bologna and Thousand Island dressing?” I asked. He nodded and grinned as much as that gauze allowed. After having all those teeth removed, he was thinking about a strange food combination, probably because he was hungry from pre-surgery fasting. I told him we’d have to wait and see how he was feeling before he could eat anything, and that satisfied him.

Once we got home, he seemed remarkably alert and pleasant, even though he had been awakened in the middle of the night, had been under anesthesia, and was given medicine to numb his jaw. We thought he would sleep most of the day, but he wanted to stay awake and talk to us. Again, the gauze packs muffled his speech, so I made him a chart with the letters of the alphabet, numbers from 0-9, and a happy face and sad face to let us know how he was feeling. His flying fingers quickly spelled out what he wanted to tell us, and it was hard for us to keep up with him. At one point, he noted that his voice was raspy, and I explained that they had put a breathing tube down his throat when he was asleep. He grinned and told me in that raspy voice that he sounded “like Bob Dylan.” Nonetheless, he was chatty all day and never once pointed to the sad face when we asked him how he was doing. We were amazed and grateful he was doing so well and was so cooperative about keeping the ice packs on his cheeks and the gauze packs in his mouth.

While we thought he might be more swollen and less pleasant the following day, he surprised us by looking quite good and acting as though nothing had happened, even though the pain medications had worn off. Although he never complained about feeling bad, we gave him over-the-counter pain medicine to keep him comfortable along with the antibiotics the doctor had prescribed. Apparently, his mouth didn’t bother him too much because his appetite was excellent. Besides looking and acting as though he felt fine, Alex was unusually chatty. Moreover, his speech suddenly seems much better and clearer. Even though Alex never complained about those teeth, maybe they have bothered him for a while and made talking more difficult. Perhaps this surgery that we feared would make him temporarily worse has been the turning point to making him permanently better. Perhaps, this is the beginning of the healing that we have prayed for God to give Alex. After seeing how well Alex has come through a rather difficult procedure, we are thankful that God has spared him pain and that Alex is recovering amazingly well, even better than we could have ever hoped or imagined. Certainly, as I was reminded this week, God keeps his promises.

“Heal me, O Lord, and I will be healed. Rescue me, and I will be rescued. You are the one I praise.” Jeremiah 17:14

Sunday, November 2, 2014

Worthy

 
In previous blog entries, I have mentioned the various roles I play as an autism mom, including teacher, therapist, nurse, pharmacist, administrative assistant, and coach. No matter what role I assume, I have one goal: to make Alex’s life better. As we have been preparing for his upcoming oral surgery this week to remove his twelve-year molars and wisdom teeth, I realize that I have another role in his life. That role is to be his agent, promoting his strengths to those who may be working with him and convincing others that he, indeed, is worthy of their kindness and compassion.

When Alex was little, he had an endearing charm that instantly drew people to him. As he has gotten older, his fully grown body with his long arms and legs has an awkwardness that can be off-putting to those who don’t know him. His difficulties with keeping enough personal space distance can seem threatening because he is so tall. In addition, he can be self-conscious at times, speaking quite softly, as though he knows that his speech can be difficult to understand. Moreover, eye contact still proves difficult for him. As a child, he had less difficulty with eye contact, and when he did look away, it appeared as shyness. As an adult, this lack of eye contact can make him appear aloof or disinterested. In essence, Alex often doesn’t make a good initial impression.

For this reason, I want his appearance to be appealing. Thankfully, he enjoys being groomed and allows me to cut his fingernails, to keep him clean shaven, and to cut and style his hair. His treasured daily baths keep him immaculately clean, and we make sure his teeth are always brushed. Between soap, shampoo, shaving cream, toothpaste, deodorant, moisturizer, and clean clothes, Alex smells good. Also, he trusts me to choose his clothes, and I make sure that he is dressed neatly and stylishly. Moreover, when Alex is in public, Ed often reminds him to put his hands at his sides or to pick up his head so that he doesn’t call negative attention to himself as he walks along. Although we love Alex just as he is, quirks and all, we know that the world may not be as accepting as we are. Therefore, we want him to look his best and do everything we can to help him with his appearance because he can’t do it himself, and frankly, he doesn’t really care.

When we have our quarterly meetings with Alex’s “team”—his case manager, behavioral therapist, music therapist, and representative from the agency that provides respite care—Ed frequently takes on the role of proud dad, telling Alex’s accomplishments and letting everyone know how smart and clever Alex truly is. When a child has a disability, discussion often revolves around the weaknesses and what that child can’t do, but we also want others to know our child’s strengths. Fortunately, those who work with Alex soon discover those strengths and can see through the obstacles to the lovable and smart young man he really is. However, Ed and I  must “sell” those strengths until Alex can display them himself.

The process of getting Alex’s oral surgery arranged has required several phone calls and appointments, where Alex has met and interacted with new people. After Alex’s dentist recommended having teeth extracted, we took him to our dentist for a second opinion, where Alex had a panoramic x-ray and examination and cooperated with the dentist and assistant nicely. He also did well with the oral surgeon and his assistant for the consultation appointment. Last week, he had a physical exam with a new doctor, along with blood tests, a chest x-ray, and an EKG, which went smoothly. This week, I spoke with a nurse at the outpatient surgical center where he will have the teeth removed. In each of these experiences, Ed and I found ourselves introducing Alex by putting the autism out there first and then promoting Alex’s strengths. “He has autism, but he loves coming to the dentist.” “He has autism, but he’s always very good about having blood tests.” “Other than autism, he’s very healthy and normal.” “He has autism but is usually very cooperative. We will help you any way we can to make this easier.” Essentially, we don’t want anyone to dismiss Alex as less than he is because he has autism. We have seen him rise to the occasion, and thankfully, he rarely disappoints us in those situations where we need him to comply. Hopefully, he may even change some people’s stereotypes of autism as they remember a nice young man whose parents said he would do well, and he did.

In Jeremiah 18, an allegory is told in which the prophet is told to go to the potter’s house. “So I went down to the potter’s house, and I saw him working at the wheel. But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him.” (Jeremiah 18:3-4 NIV) In this symbolic story, the potter is God who can take the marred and make it good and useful. Despite the marring that autism causes, God has created Alex with strengths that can overcome the weaknesses. As his parents, we want others to recognize how much he has to offer, and we gladly push aside the obvious hindrance so that others can realize all the good that lies underneath.
“But you are not like that, for you are a chosen people. You are royal priests, a holy nation, God’s very own possession. As a result, you can show others the goodness of God, for He called you out of the darkness into His wonderful light.” I Peter 2:9

Sunday, October 26, 2014

Fearless


Recently Ed complimented me in a way that totally surprised me by telling me how brave he thinks I am. At first, I thought he was teasing me, as he often likes to do, but he sincerely assured me that he was completely serious. Because I see myself as quite cowardly, this comment took me off guard. I think of myself as the little kindergarten girl who for a month clutched a map my mom had made of the route between home and school, terrified that I would get lost. Driving on highways makes me terribly nervous, and the thought of driving out of town makes me sick to my stomach. Before any new situation, I repeatedly mentally rehearse what I will say and do, for fear of making a fool of myself. If he thinks I’m brave, I must put on a good fa├žade.

This week, we had to take Alex for a physical examination to gain medical clearance for his upcoming oral surgery to remove his twelve-year molars and wisdom teeth under general anesthesia. Because his regular family doctor is now only available limited hours, I decided to take him to another doctor. After rehearsing this scenario in my mind several times, we took Alex to the new physician on Friday. We were quite impressed with the doctor, her staff, and her office, and we were pleased we didn’t have to wait long. However, Alex decided he was not happy to be there and made his displeasure known. First, he waved “the claw,” his right wrist bent at a ninety-degree angle and waved up and down in a dismissive gesture while making a face as though he’d been sucking lemons. Then he decided to stomp his foot on the step of the examination table to get our attention as the doctor and I went over his medical history. Realizing we were ignoring his hand waving and foot stomping, he escalated to swinging his hands and feet. He would not be ignored.

Thankfully, Ed was there to handle Alex, who was acting more like a two-year-old than a twenty-two-year-old, distracting him and trying to keep him calm so that I could convey information to the doctor. Finally, as Alex became more agitated, I apologized to the kind and understanding doctor and asked her to give us about five minutes alone to settle down Alex. Once she left the room, Ed and I went into teamwork mode, with Ed cajoling and coaxing while I instructed him to use the calm down skills he has learned in therapy. With his requested reward of going to Pet Supplies Plus hanging in the balance and a few minutes of reassurance that we were almost done, Alex pulled himself together and was able to complete the physical exam without further incident. However, we knew that we had another step ahead of us before he could receive medical clearance: tests.

Knowing that Alex is much more pleasant in the evening, we decided to take him for his tests after he’d eaten dinner and had his beloved nightly bath. Fortunately, the lab where we needed to take him has evening hours, so we knew this was probably the best scenario to get the testing done. On Friday evening, we discovered that Alex was the only patient, which was ideal because he didn’t have to wait. As usual, he handled the blood draw beautifully, never even flinching and watching in fascination as his blood was drawn into test tubes. The friendly lab technician even commented that he was “a perfect patient.” After that, he needed to have an EKG and chest x-rays, something he had never done before. Uncertain as to how he would do with having to be very still, we were a little nervous about how long these tests could take. However, the x-ray technician was wonderful with him and able to get him to cooperate fully so that the tests went very smoothly. Moreover, Alex apparently had a great time and found the tests interesting. Not only were we pleased with the outstanding and efficient staff at the lab, but we were also delighted that Alex had been so pleasant and cooperative. After dealing with Mr. Hyde at the doctor’s appointment, we were thankful to take Dr. Jekyll to the lab.

Even though we weren’t happy with Alex’s behavior at the doctor and were a little apprehensive about how he would react to the tests, we weren’t afraid. I think we have been through enough difficult situations with him to know that somehow we pull together and pull through to get things done. Ed and I each know our roles in those circumstances: he handles Alex while I handle the paperwork and medical staff, each of us playing to our strengths. Most of all, we support each other so that we can help Alex be healthy, happy, and safe. Part of this fearlessness comes from the faith we have learned in the tough times; we know that God has always seen us through every situation. In fact, one of the things I like best about the facility where we took Alex for the doctor’s appointment and lab tests is that because of its affiliation with the Catholic church, the abundance of Bibles and religious symbols reminded us of God’s presence.

Moreover, as I watched Ed calmly interacting with Alex, especially when Alex was agitated, I realized that his fearlessness has inspired me to be brave. Whether it’s because he grew up in New York City or because he has a few years of life experience on me or because he just doesn’t naturally fret the way I do, I can attribute any bravery I have to what I’ve learned from living with Ed. Today we celebrate Ed’s birthday, and every day I thank God that he is Alex’s dad. I’m sure our life is not what he imagined when he thought of what fatherhood would be like, but being an autism dad has made him rise to the occasion, to be braver and stronger and more patient and more compassionate. Because of his quiet strength and unconditional love, Alex and I are blessed, and the three of us make quite a team, pressing forward fearlessly, ready for the next adventure.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10