Sunday, February 28, 2016

Taking Charge/Letting Go

Several years ago, an assistant principal who has since retired from the school where I teach had a plaque on his office wall that read, “If it is to be, it is up to me.” He probably intended that message to the students who landed in his office for not following the rules as a lesson on responsibility. However, some of the staff also suspected that he intended that as a message for the teachers to handle our own students with discipline problems so that he wouldn’t have to deal with them himself. Nonetheless, the message resonated within me as I convinced myself that I was solely responsible for Alex getting better. I believed that if I worked and researched hard enough, I could find the best methods to help him overcome the struggles of autism. Four years ago when his anxiety and behavior began spiraling out of control, I was not only overwhelmed by the crisis our family was facing but also by the feelings of failure that somehow I was to blame for this.

What began with a detachment in which Alex began rarely speaking to us and lacked interest in doing anything except for lying on the couch or sleeping in his bed escalated to full-blown anxiety attacks in which he would angrily and falsely accuse us of misdeeds and physically attack us. Somewhere along the line, we had lost our sweet and docile boy and were living with a fully grown angry young man who was a stranger to us. Despite our best efforts to keep him engaged in activities and calm and happy, to not awaken the beast, Alex was dealing problems we couldn’t identify or solve for him.

During these excruciating months, I read and researched harder than I had ever done in my life, desperately trying to find the key to the place where Alex had locked himself inside. His family doctor had retired because she was very ill, and the doctor we were seeing was willing to try various medications but didn’t seem to have much experience with autism. We also took him to another doctor who was compassionate and holistic in his approach, but Alex seemed only marginally better with the treatments he recommended. Frantically, I kept looking for methods and supplements to ease anxiety and aggression in autism, yet none of the things we tried seemed to have much impact. In addition, I met with a therapist and a psychiatrist myself because Alex would not leave the house, and I tried to explain the desperate nature of our situation: we were losing our son to some sort of madness, and we had to get him back. While both of them were sympathetic, they didn’t have any real answers or anything new that we hadn’t already tried. Even though I had been willing to allow professionals to know the upsetting details of our private life, they were unable to help, which made me return to the plaque on the wall: “If it is to be, it is up to me.”

However, I was wrong. This battle was not mine to fight. Even though I had prayed throughout the struggles, I kept praying for God to show me the answers, for God to help me help Alex. Instead, if Alex was to get better, I needed to surrender to God’s will and to surrender Alex to others’ care. Admitting that I was not up to the task that I had devoted myself to for Alex’s entire life was harder than I imagined, but I had to do it for his sake. Clearly, he was not getting better at home, and nothing I did was helping him get better. Ed and I came to the hardest decision we would ever have to make; we knew that we would have to hospitalize Alex in a psychiatric ward. That hardest decision was ultimately the best decision we ever made.

During the weeks that Alex spent in the hospital, he finally received the treatment that he needed from knowledgeable and caring professionals, and he was put on medications that eased his anxiety and the subsequent aggression, so that he could enjoy life once again. Moreover, they explained to us that his behavior did have a reason. The Prozac that he had been taking for his OCD had suddenly stopped working, which meant that he was overwhelmed and unable to cope without an SSRI to help calm him. In addition, he was going through his final growth spurt, which brought hormonal changes, especially increased testosterone, that made him anxious and aggressive. Finally, we not only had answers to our questions, but we also had solutions to our problems. It was not up to me; it was up to God to lead us to the right people who could help Alex.

While Alex’s hospitalization was a heart-wrenching time, those weeks were necessary to help him get better, something that was not happening while he was at home with us prior to putting him in intensive treatment. Another unexpected blessing that came from this dark time was that his social worker during the inpatient stay provided invaluable assistance in getting legal paperwork in place (along with our kind-hearted lawyer neighbor who drew up documents on a Sunday afternoon and came to our home to go over them with us) to name Ed and me as Alex’s legal health care representatives so that we can make medical decisions regarding his care. His social worker also helped us navigate the complicated process of getting state support services for Alex by making countless phone calls to plead Alex’s case, making appointments with a doctor and a psychologist to assess Alex in the hospital for the state-required paperwork, and answering any questions we had about the process.

Although we had carefully followed all of the steps the state requires to get support services for a disabled adult, we knew that the waiting list to qualify was ridiculously long. Typically at that time, parents waited at least ten years for their children to qualify. Knowing this was in God’s hands and not mine, I prayed for patience. This was not up to me; it was up to a bureaucracy, and truthfully, I didn’t have a lot of faith in them. However, God moved mountains, and in less than three months after all of our stacks of paperwork were filed, we received a call that the state granted our request for an autism waiver, which meant that Alex could receive a variety of supports that he needed. Within a few weeks, we had a case manager to oversee his budget and services and a therapist to help us with his behavior. Moreover, he qualified for Medicaid retroactively six months, which meant that they helped cover hospitalization costs that our private insurance did not. The speed of this notoriously slow process is nothing short of miraculous; we cannot explain why things fell into place other than to give the glory to God.

This morning, I was reading Psalm 102 for the first time, something I should have been reading four years ago. This Psalm is described as “A prayer of one overwhelmed with trouble, pouring out problems before the LORD.” Remembering the desperation I felt during those dark times, I empathize with that Psalmist, who pleads, “Hear my prayer, LORD; let my cry for help come to you. Do not hide your face from me when I am in distress. Turn your ear to me; when I call, answer me quickly.” Four years later, I can proclaim that God did answer our prayers and provided even more than we asked. Not only did He provide the help Alex needed to get better, but He also returned our sweet son to us, and He made certain that we had a support team in place so that Alex could continue to make progress. What seemed to be a hopeless setback was, in fact, the appointed time for God to set in place His plans that were better than ours, to propel us forward faster than we imagined. Perhaps the true lesson should be, “If it to be, it is up to Thee.”

“You will arise and have compassion…the appointed time has come.” Psalm 102:13

Sunday, February 21, 2016

Thoughtful Acts of Kindness

“In spite of everything, I still believe that people are really good at heart.” ––Anne Frank

For several years we hesitated to take Alex places because his behavior was unpredictable, and we feared that he might become overwhelmed in a public place. While our first concern was avoiding upsetting him, we also didn’t know how others might respond to his behavior, and we tried to avoid uncomfortable situations. Even as he has improved over time, we feel a need to protect him from people who may intentionally or unintentionally not take kindly to his impaired communication and social skills. However, as we have recently begun taking him out to public places more often, we have been gratified to see how kind people truly are to Alex.

On Friday evening, we took Alex to a Valparaiso University men’s basketball game, which was very crowded and loud. Despite all the people, noise, and activity, Alex thoroughly enjoyed himself. At one point, the cheerleaders tossed mini-basketballs with VU logos on them into the crowd, but we were unable to catch one for Alex. Later, a pretty college girl who had apparently been sitting closer to the court earlier in the game came up to sit with her friends in front of us. She smiled at Alex, held out the mini-basketball she had been able to catch, and asked, “Would you like to have this?” Delighted, Alex took the basketball from her hand, smiled at her, and thanked her.

What she didn’t know after she turned around was that Alex held that little basketball the entire game and kept smiling at her. The next day he was worried that he had lost that small gift, and he was relieved and happy that I remembered where he had put it for safekeeping. What she didn’t know was that not only did she make a young man with autism happy by giving him a small token, but she also endeared herself to his parents with her kindness to their son. That pretty young woman became even more beautiful in our eyes because of her kind heart and generous spirit.

Last evening, we took Alex to our favorite family restaurant, Round the Clock in the nearby town of Chesterton. The atmosphere is quite relaxing, and the food and service are always excellent. Moreover, we have been impressed with how warm and friendly the staff members are to Alex. One young lady, Kayla, has waited on us several times, and she also works as a hostess there on weekends. Whenever she sees Alex, she greets him warmly by name, asks him questions, and patiently waits for him to answer. Last night, as she greeted us and showed us to our table, she once again engaged Alex in friendly conversation, and when we left, she made a special point to say goodbye to him.

What Kayla doesn’t know is that Alex is always happy to see her, even when he doesn’t look up at her. She may not see his shudder of joy when she smiles and calls him by name, but his mother sees it all. She may think that she’s just doing her job to be friendly to customers, but we know that she makes the special effort to make Alex feel welcome because she patiently waits for him to acknowledge her, never rushing him, even when she is busy. Moreover, she treats Alex like an old friend, and for this his parents are thankful.

Later in the evening, we took Alex to the middle school where I teach for a Mardi Gras celebration, filled with carnival games, loud music, and hundreds of excited middle school kids. Like the basketball game the night before, Alex thoroughly enjoyed himself in the midst of all the chaos. As we entered the gym, my friend and colleague Debbie, who has always taken a special interest in Alex and shown him kindness, greeted Alex warmly, gave him Mardi Gras bead necklaces (which he promptly put around his neck without any prompting), and handed him three tokens,  explaining that he was to use them to vote for his favorite games. Before we entered the crowded, noisy atmosphere, Debbie’s reassuring demeanor prepared Alex for the activities ahead. Although she would likely dismiss her kindness toward Alex as no big deal and assure us that she was pleased he could be part of Mardi Gras, Alex was happy to see a friendly face in the crowd, and we were grateful that she made him feel comfortable.

As we walked around the gym, I looked for games that I thought Alex could play so that he could be part of the celebration. Seeing a game with big dice being run by one of my former students, I asked him if he would like to play that one. While I knew my former student was a nice young lady, she showed exceptional kindness to Alex as she patiently explained how the game worked. As he tossed plastic peppers into a sombrero, she earnestly cheered for him and encouraged him to stand closer, trying to help him win a prize. After the game was over, she sweetly told him, “Thanks for playing.” What she didn’t know was that he walked away with a grin on his face, pleased that he could participate in one of the games because she had helped him understand the rules. What she also didn’t know was that her former teacher will not only remember her always as an excellent student but also as a wonderful person who was kind to her son.

Spotting a game that was similar to his favorite game on The Price is Right, Plinko, I suggested that he try that one. In addition to the game itself being familiar to him, I was also reassured because the student running the game is one of my nicest students this year. She sweetly explained to Alex how the game worked and allowed him to have a second chance when the golf ball didn’t run down the Plinko board as it was supposed to do. When Alex’s ball landed on the winning spot, she cheered for him, even though it meant that he could throw a pie in her face. Knowing that Alex was not comfortable doing this, I explained to her that she didn’t have to do that, but she put the pie in her own face as a good sport. Smiling at Alex with whipped cream on her face, what she didn’t know was that he found the whole thing amusing. What she also didn’t know was that she has now found a special place in her English teacher’s heart because she took the time to help and understand Alex.

In an age where people often respond to expressions of thanks with “No big deal” or “No problem,” those who are kind to Alex should know that it is a big deal to us, and we see the extra effort, even if they assure us it was not a problem for them. Little things truly mean a lot to Alex, even if he can’t always express the gratitude he feels, often because he is overwhelmed by the kind acts. Moreover, as his parents, we always appreciate those who take them time to engage Alex, to speak to him in a way that is never condescending or patronizing, and to make him feel part of a community. In doing so, he has opportunities to practice his social skills, to enjoy interacting with others, and most of all, learning how to be kind to others because they have been kind to him. What may seem like a small act, indeed, has greater impact than people may ever know. However, we notice those who treat Alex with kindness, and we feel blessed.

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

Sunday, February 14, 2016

Make a Joyful Noise

As I have mentioned in previous blog entries, Alex usually speaks quietly, often making understanding what he has to say difficult. In fact, one of the areas his therapists and we have worked with him to improve is making his volume audible so that he can be heard. As they have pointed out to us, in order to advocate for himself, Alex will have to speak up and make sure he is heard. Even though we are willing to ask him to repeat what he has said until we understand what he wants to tell us, other people may not be as patient with him. For this reason, we have worked with him on his volume and had him practice asking and answering questions he would need in social situations, such as ordering his food in a restaurant, something he does regularly on our Fun Friday recreational therapy outings.

I don’t know whether he speaks quietly because his hearing is so acute that his voice sounds louder to him than it does to other people, or perhaps he feels unsure about speaking aloud because he knows speech is one of his weaknesses. Of course, like any skill, he has needed to practice to improve, and we have been pleased with the progress we have seen. Recently, his music therapist commented that Alex rarely has to repeat something he has said because he is speaking with an appropriate volume most of the time now.

A couple of weeks ago, Alex came downstairs and enthusiastically told us how low gas prices were and specifically named the price at a local gas station. One of his interests is following oil prices every day and observing how they affect gasoline prices. He went on to tell us that this was the lowest price in many years and cited the specific year in the past when gasoline prices were that cheap. Because Alex was so excited about these low gas prices, Ed suggested that we go fill my car’s gas tank at the station Alex had found online, even though it was 9:30 at night. Alex was even more excited that we were actually going to the gas station, and he was delighted to be going along for what he perceived to be a grand adventure. Essentially, he was being rewarded for speaking up and sharing his knowledge with us.

Yesterday afternoon, I could hear men’s voices talking upstairs, and I realized that Alex and Ed were having a conversation. Even through the closed door of Alex’s room, I could hear their discussion about the upcoming Valparaiso University men’s basketball game that evening. In the past, I would have been able to hear Ed’s voice but not Alex’s, and it was nice to be able to hear him matching Ed’s normal conversational volume. As I briefly eavesdropped, I was happy to hear them talk about a shared interest, something we once wondered if Alex would ever be able to do.

In addition to speaking up more, Alex has also been singing in a louder voice lately. One of the many benefits of music therapy is that Alex has learned to sing along to songs he enjoys. When he first started music therapy, he would just listen to the songs or maybe play a percussion instrument or accompany on keyboard, playing all the wrong notes. With time, he gradually began singing along, but he would barely sing, so that he appeared to be lip syncing. Now, as we watch American Idol together every week or listen to music on the cable Music Choice channels or listen to the radio in the car, I often hear Alex’s voice, sweet but off key, like mine, singing along to the lyrics.  As I listen to him sing, I wonder if singing has helped his speech because he can recite words that are familiar while gaining practice with his articulation and volume. Nonetheless, we just like listening to him sing because it clearly brings him joy.

Last night at the university basketball game, Alex thoroughly enjoyed himself, even though our team lost. After going to several games this season, he knows the routines of when to stand, when to sit, when to clap, and when to cheer. When the first notes of the VU fight song play, he immediately stands with the rest of the crowd. When the cheerleaders run to the floor with signs, he eagerly anticipates the chant of “HEY, VU!” followed by, “V-A-L-P-A-R-A-I-S-O, LET’S GO, VALPO, LET'S GO!” In addition, he recognizes familiar songs the pep band plays, and he smiles and gently rocks when they play his favorite tunes.

One of his favorite songs they play is “Livin’ on a Prayer” by Bon Jovi, one of his favorite groups, whom he used to call “Bon Jo-bee” when he was younger. I found it interesting that the student section was singing the chorus to this song loudly, even though none of them were even born when this song was popular in the 1980’s. Sometimes Alex sings along with them; mostly he smiles as he listens. To encourage him to sing along, I sing the words in his ear, and I realize that these words have meaning for us, a promise we will get past the obstacles autism has presented our family:

“Whoa, we’re halfway there; whoa, livin’ on a prayer.
Take my hand; we’ll make it, I swear. Whoa, livin’ on a prayer.”

When Alex was younger, we prayed for the time when we would be able to have conversations with him, and we worked hard to get him to speak more, wanting to know what he would have to say. While he still struggles with speech, he can now give us some insights into his thoughts, sharing his enthusiasm about gasoline prices, basketball, or a familiar tune. I’m certain that with more time and more practice, he will have more to say. Indeed, we are “halfway there,” and for that, we are truly grateful. Alex, “take my hand; we’ll make it, I swear. Whoa, livin’ on a prayer.”

“Make a joyful noise unto the Lord, all the earth; make a loud noise, and rejoice, and sing praise.” Psalm 98:4

Sunday, February 7, 2016

Keys to Success

Yesterday I read an interesting article that made me think about the most valuable skills we can teach children, whether they have autism or not. This article was linked on the Indiana Resource Center for Autism’s Facebook page and was published on their website, which has a wealth of resources and information regarding autism. [To read this article on their website, please click here.] Written by graduate student Anna Merrill, “Tools for Successful Transition: Self-Determination, Resilience, and Grit” identifies three key traits that will help adolescents, particularly those with autism, develop into successful adults. She notes that self-determination, resilience, and grit are important for positive outcomes, such as employment, independence, and a better life for adults.

The first of these traits, self-determination, focuses upon pursuing and obtaining goals, which are needed for a sense of well-being. Ms. Merrill lists several strategies to develop self-determination in adolescents, such as teaching goal-setting and problem-solving skills, encouraging decision making, and promoting self-awareness and self-advocacy. In addition, she provides practical suggestions, including participation in planning meetings, developing listening and effective communication skills, learning to deal with stress and frustration, and self-evaluation of interests, strengths, and weaknesses.

I found these strategies interesting because Alex’s support team––his case manager, behavioral therapist, music therapist, and respite staff, along with Ed and me––all use these approaches to help him make decisions and become more independent. This Wednesday, we will have a quarterly meeting with his team to discuss his progress and needs. As always, Alex is expected to be an active participant because he will need to answer questions, even though verbalizing his thoughts and feelings isn’t always easy for him. Nonetheless, we all know that his input is vital to developing his skills and planning for his future.

The second trait detailed in the article is resilience, the ability to cope despite adversity and the refusal to give up. To deal with challenges, Ms. Merrill notes three important elements crucial to resilience. Specifically, developing positive personal traits, such as optimism and self-esteem, is vital to resilience. In addition, family relationships, including a nurturing environment and a stable home life, help develop resiliency. Along with family support, community support, such as connections with extended family and involvement in community activities, also foster resilience. Essentially, a good attitude and the support of caring people help a person learn to deal with challenges effectively.

Despite the obstacles autism has presented, Alex has learned to be quite resilient. He maintains a positive attitude most of the time and rarely complains about how difficult some tasks are for him, due to his fine motor and communication limitations. In addition to our love and support, he now has a team who provides support, and because his behavior has improved, he has more opportunities to interact with extended family and to engage in community activities, such as music and sports, which he thoroughly enjoys.

The final quality needed for success, according to the article, is grit, which is related to resilience in that grit is the perseverance despite obstacles, the tenacity to pursue goals, no matter what. To develop grit, Ms. Merrill recommends encouraging a growth mindset that emphasizes the value of the process and not just focusing on the outcome. Grit requires persistence, a desire to learn, and valuing challenges, effort, and criticism.

The importance of grit makes sense to me because Alex is one of the most tenacious people I’ve ever known. (I’m pretty tenacious myself, so he may have inherited or imitated that quality from me!) I’m certain that one of the main reasons he has made so much progress over the years is that he never gives up and keeps on trying, despite the obstacles autism has created. For example, if he tries to tell us something, and we don’t understand what he’s saying, he will keep giving us clues until we figure out what he wants to communicate. To watch him eat is often a lesson in grit because his fine motor skills can make eating difficult. Nonetheless, he never gives up poking or scooping with his fork until he is able to get food in his mouth, which is the reward for his efforts.

After detailing the three qualities needed for success, this article also discusses what may hinder the development of self-determination, resilience, and grit. The author notes that parents may prevent their special needs children from developing these important traits with the best of intentions. Specifically, parents may want to protect their children or may not want them to fail, so their children do not develop these qualities necessary for success in life. She recommends that parents focus more on long-term goals than daily goals and push out of their comfort zones, which is in the best interest of their children so that they may successfully become independent adults.

With the best of intentions, I have been a full-fledged helicopter parent to Alex, I admit. Because he could not speak well, I have been too quick to speak for him. Because fine motor skills made basic tasks difficult for him, I have been his extra pair of hands. Because I feared for his safety, especially since he is naively trusting and doesn’t always sense danger, I have held onto him tightly. And for less noble reasons, sometimes because I was in a hurry, I did things for him because it was faster and easier than waiting for him to do it himself. Although I have enabled him in many ways, I know that he must learn to be independent because I won’t always be around to fix him a snack, or zip his jacket, or remind him to go to the bathroom before he leaves the house.

Because Alex has learned good coping skills and is less likely to become overwhelmed, we have been encouraging him to make his own decisions. At first this was difficult for him because he was used to us telling him what to do. After teaching him how to weigh his options, he is becoming quite adept at making reasonable choices, and he seems to feel proud that he can decide for himself. In addition, I am learning to walk away and let him do things for himself instead of watching him struggle and then taking over for him. For example, he may have to take a dozen attempts to hang up his jacket, but I can’t grab it out of his hands, or he’ll never learn to do it on his own. With more practice, he’s getting much better at hanging up his coat in fewer tries, but more importantly, he feels a sense of pride for doing this task by himself.

This sense of independence has carried over in other aspects, as well. Recently, Alex has begun consistently bringing his dishes and forks to the sink after he’s done eating without being reminded to do so. In addition, he has become more involved in planning his schedule, making sure that we know the dates and times of basketball games or television shows he doesn’t want to miss. Also, he has shown more autonomy in his health, letting us know when it’s time to take his pills and wanting to learn all the names of them, identifying them by color and shape. Rather than relying upon us for every aspect of his carefully planned schedule, Alex is becoming more self-reliant, and he likes being a more active participant. With these small steps, he works toward our ultimate goal––independence, and we know that God will be with Alex every step of the way.

“So we keep on praying for you, asking our God to enable you to live a life worthy of His call. May He give you the power to accomplish all the good things your faith prompts you to do.”  2 Thessalonians 1:11