Sunday, September 25, 2016

Friends

 
Earlier this month, the media reported the heartwarming story of the Florida State University football player, Travis Rudolph, who was visiting a Florida middle school and saw a student sitting by himself at lunch. This boy, Bo Paske, has autism and usually eats lunch alone. However, on that day, Travis Rudolph asked Bo if he could sit with him, and this story of kindness went viral on the Internet. While this incident revealed how children with autism are often isolated from their peers, it also showed the tremendous value of a simple act of kindness. This story drew attention to the problems kids with autism have regarding social skills and apparently had a happy ending. Not only did Bo enjoy lunch with a college football player, but also reportedly his classmates now choose to join him for lunch so that he no longer has to eat by himself.

Last week, another story about how kids with autism feel isolated from their peers also went viral in the media. As Fox News reported in an online article, “New Jersey dad pens touching letter after autistic son says he has no friends,” autism dad Bob Cornelius posted a letter on Facebook this week after seeing a worksheet that asked his son to list his friends, and his son had written “No one.” [To read this article, please click here.] What was especially heartbreaking about this situation was that the father saw the worksheet posted on the wall as a display for back-to-school night. At the time, the father didn’t read through all the responses; he simply took a quick picture of the worksheet. After he got home, he then saw what his son had written in response to the prompt, “Some of my friends are…”

In his candid Facebook post, Bob Cornelius explains the sad truth that his eleven-year-old son, Christopher, has never had a friend. While he recognizes that some of his son’s behaviors, such as hand flapping and noise making and asking unusual questions might make some people feel uncomfortable, he also notes, “Every adult that meets him is drawn to him.” [To read this Facebook post, please click here.] In addition, he says that while his son’s peers have never been mean to him, they have never included him, either, leaving him out of activities and making him realize that he has no friends.

Reflecting no anger or bitterness for his son’s situation, this autism dad’s letter admits that he doesn’t think “this post is going to change the world.” However, he asks parents to talk with their children about making the effort to show empathy and “include those that are different from everybody else.” As he points out, “at the end of the day, it comes down to compassion, empathy and understanding.” I am hopeful that his post will have greater impact than he expects, and I hope the media attention his letter is getting will make a difference in the lives of those kids with autism who don’t have friends. Perhaps people will recognize that making an effort to interact with children and adults who have autism not only blesses those with autism but also themselves through these acts of kindness and compassion.

As an autism mom, I can empathize with the sorrow Christopher’s dad feels that his son doesn’t have friends. In the sense of typical friendship, Alex has never really had those kinds of friends, either. By home schooling him, we protected him from that reality because he never saw himself as different from his peers. I remember doing a worksheet with him one time that was similar to the one posted on the back-to-school night wall. When Alex was asked to list his friends, he immediately told me, “Nanny,” his grandmother and my mom. At the time, I thought that was sweet; after all, she’s been my dearest friend all of my life and someone I know will always be loving, kind, and loyal to my son. However, growing up, Alex has never had friends his own age. Fortunately, he doesn’t seem to notice or care, and now that he is an adult, he can enjoy the company of the adults whom he has always preferred, anyway.

After reading this story the other day, I asked Alex who his friends are. Without hesitation, he named his dad and me and Nanny and Grandpa. Then I asked him who his friends are who are not his relatives, and he named his wonderful support team: Jennifer, Noel, Jessica, and Zika. (I would also add his aunts, uncles, and cousins who have been loving and understanding, along with some of my friends who show him kindness and interest.) Clearly, Alex has a keen sense of who cares about him. Moreover, if I had to handpick friends for him, I would choose those he considers his friends because I know they always have his best interests at heart. As his social skills develop, I see Alex’s interactions with others improving and enabling him to make more friends in the future, which is encouraging.

To me, what was equally troubling about this story of Christopher’s not having friends was the lack of good judgment and compassion his teacher showed by posting this worksheet for back-to-school night. I gather from his dad’s Facebook post that his son is in a special needs class. Surely, the teacher realizes that special needs kids, especially those with autism, have difficulty making friends. According to Christopher’s worksheet, his teacher’s name is Ms. Feld, and I would like to write a letter to her.

Dear Ms. Feld:

Like you, I am a middle school teacher of special needs children. Perhaps you have not had the more than thirty years of teaching experience that I have had. However, the posting of Christopher’s worksheet on the wall for everyone to see his heartbreaking response to the question regarding who his friends are was at best lacking good sense and at worst simply cruel. Did you stop to think about how his parents might feel in seeing that he had written “No one” in response to who his friends are? Did you consider for a moment that posting this worksheet for anyone to see was just wrong? In fact, let’s go back to the beginning. Did you even recognize that this worksheet was not appropriate for special needs children? As teachers, we know that we must modify assignments to make them suitable for our special needs students. If you ever plan to use this worksheet again, I strongly suggest that you omit the question about friends so that no child has to feel the sense of loss that Christopher––as well as his parents––had to feel as a result of your carelessness. In fact, I have a better solution. Take that worksheet and place it in the paper shredder so that you are never tempted to use it again. After all the publicity this worksheet has received this week, I hope that you have learned, as we teachers must constantly strive to do, an important lesson: try to put yourself in your students’ shoes before putting them on the spot.

Sincerely,

Mrs. Byrne, middle school English teacher/Alex’s mom

“A friend is always loyal, and a brother is born to help in times of need.” Proverbs 17:17

Sunday, September 18, 2016

Enlightenment

 
“The time has come,” the Walrus said, “to talk of many things: Of shoes––and ships––and sealing wax, of cabbages and kings–­–“ ~Lewis Carroll
"The time has come," the mother said, "to talk of many things: Of greeting dudes––and autism, of power out and kings––"

As a teacher, some of my favorite moments are when students finally comprehend a concept that has eluded them. When the figurative light bulbs brighten above their heads, their eyes shine, and their smiles widen as they feel pride in that moment they finally understand. As Alex’s mom, I feel a tremendous sense of pride when he finally masters a skill he has struggled to learn because autism has impaired his nervous system in various ways. Those moments when enlightenment appears are precious because he feels a sense of accomplishment, and he revels in the praise we give him.

This week during his music therapy session, he demonstrated some real breakthroughs. Lately, his behavioral therapist has been working with Alex on greeting people without being prompted by us. For years, we have been saying to Alex, “Say hello to [whomever he needs to acknowledge],” hoping that through sheer repetition, he would eventually offer a proper greeting on his own. However, his therapist has suggested that we wait and allow him to say hello on his own without prompting. On Thursday, when his music therapist––who is the coolest guy we know––arrived, he greeted Alex by saying, “Hey!” Fighting my mom’s need to intervene, I watched as Alex formulated a response. It was worth the wait. He grinned at his therapist and responded, “Hey, Dude!” Since his therapist often calls Alex “Dude,” this response reflected their friendly relationship appropriately. Moreover, he also made his music therapist and me laugh with this unexpected greeting.

To move Alex away from OCD routines and to develop independent decision making, his music therapist has been encouraging Alex to choose songs for their session as they go instead of listing them all at the beginning. This spontaneity was a little difficult for Alex at first, but he seems to be adjusting and is becoming better at coming up with songs on his own. However, this week he suddenly shut down in the middle of their session. In the past, Alex might have waved his bent hand (aka the dreaded “claw”) in disgust or even grabbed his therapist’s arm to let him know he wasn’t happy. Instead, Alex simply became quiet, mulling over how to let his therapist know what was wrong. With some prompting and encouragement, Alex was able to express that he wanted to know how many songs they were going to do that day. After his therapist gave him the answer, he was able to continue happily through the rest of their time together, which shows growth in his ability to deal with anxiety. In fact, his therapist described their session as “fantastic” because Alex handled his upset so well and recovered quickly once he knew how things would proceed. Clearly, he is learning how to manage his concerns and communicate them so that he can receive the reassurance he needs.

Another unexpected incident allowed Alex to show how well he has developed coping skills in a situation that would have thrown him for a loop in the past. When I came home from work on Wednesday, Ed told me that the power had come on just minutes before I had arrived and that Alex had handled the morning without electricity amazingly well. Even though he had no Internet access for his iPad nor cable television to watch his beloved game show, The Price Is Right, he apparently never became upset and handled the unexplained power outage calmly. At one point, Alex pulled a flashlight out of the kitchen drawer. Ed thought perhaps he was imitating me because I carry around a flashlight during storms, always wanting to be prepared in case the lights do go out. Alex then headed for the dark, windowless bathroom with a flashlight in hand, ready to use the toilet. Instead of panicking about not being able to use the bathroom in the dark, he solved the problem independently. Apparently, my lessons about being prepared in the event of a power outage had made an impression on him. Without our prompting, he knew what to do, and we were pleased that he handled the entire situation so well.

Alex, however, isn’t the only one who sees the light literally and figuratively. Sometimes we enjoy the same sense of accomplishment when we solve the mysteries regarding something he’s trying to convey to us. Because of Alex’s idiosyncratic use of speech, he’ll sometimes say things, and we have trouble figuring out the context. For example, we still don’t understand why he used to say “Country Crock” whenever we talked about going to Ed’s office. Now that his speech is clearer, he can better explain to us why he says certain things that appear random on the surface but have some meaning to him.

Ever since he was little, I have regaled him with various goofy songs I know while grooming him. He has found these songs amusing and will sit nicely as I brush his teeth, shampoo his hair, and clip his nails. Once I started shaving his face, which he cannot do himself due to his poor fine motor skills and hand tremor, I added the silly ditty “Shaving Cream” to our repertoire. Every time I sang, “Shaving cream, be nice and clean. Shave every day, and you’ll always look keen!” he would immediately add, “Like Richard Petty!” I wracked my brain to figure out what the connection was between the famous NASCAR driver and this stupid song. Recently, he has begun singing along with me, and I finally figured out why he added his own line. He thought I was saying “king” instead of “keen,” and Richard Petty’s nickname is The King. Once I had my “Aha!” moment of enlightenment, I finally understood Alex’s addition to the song. Even after I explained what keen meant, we have gotten in such a habit of adding “Like Richard Petty” to the end that we continue it for old time’s sake and as a joke we share.

Through the years, we have known that much more was going on in Alex’s mind than he was able to share with us. However, as he has developed his coping skills and language skills over time, he has been better able to convey what he has been thinking. We are delighted that he can express himself more easily because not only can he share what he’s thinking and feeling, but he also shares a quick wit that entertains us. As we always suspected, beneath that quiet exterior lies an active mind, and we are thankful to have greater insights into our son, whose unique perspective enlightens us in new ways.

“Arise, shine, for your light has come, and the glory of the Lord has risen upon you.” Isaiah 60:1

Sunday, September 11, 2016

When Someday Finally Arrives

 
This past week was one that should have thrown Alex off course, but it did not. With his dad and I settling back into school routines the past few weeks, Alex could have resented that we are not always home. With additional appointments and job responsibilities of meetings and schedules that strayed from their normal times and interfered with family dinners twice this week, Alex could have felt anxious. With his own schedule packed every day meeting with one of his support team, Alex could have been overwhelmed. However, he remained calm, cooperative, and pleasant all day every day. Moreover, he thoroughly enjoyed dinners downtown four evenings as part our community’s annual Popcorn Festival and seemed to ignore the intense heat and sensory overload of having a meal in a crowded outdoor pavilion. I would venture to say that he was having a grand old time sharing meals with the other festival goers. A few years ago we never could have dreamed that he would handle a week like last week that amazingly well.

A few days ago I was explaining to a friend what Alex was like before we had to hospitalize him for extreme anxiety and agitation. I discussed his drastic change in grooming habits from wanting to be immaculate to being extremely difficult about brushing his teeth and combing his hair. His sleep patterns became erratic, and we dreaded when he would awaken because he was usually belligerent. In fact, most of the day he was a ticking time bomb ready to explode in anger and aggressive behavior, blaming us for anything that went wrong and even things that he simply imagined were wrong. Something had stolen our sweet son from us and sent all three of us into the depths of despair, a period I call “when the wheels fell off the bus.” However, our desperation and Alex’s extreme behavior propelled us to find the help we needed, and God led us to professionals who understood the motivation behind his behavior, and more importantly, knew how to treat his extreme anxiety that triggered the aggression.

While we would prefer to forget those terrible times, stowing them away in an attic of our minds where we never have to see them, remembering them from time to time can be helpful. For others going through similar turmoil, I share our experiences as a way to give them hope that they, too, will get through ordeals and be able to look forward to a time when their lives will return to a new “normal,” whatever that may be. When I look back on the times we were waiting for Alex to get better––to not throw things in anger, to not overreact about minor things, to not live in constant fear––I just kept praying and thinking that someday we would look back on those days and feel thankful they were behind us.

Along with helping others, recalling those upsetting events makes us even more grateful for the progress Alex has made. When Alex refused to talk to us, overwhelmed by his emotions, we prayed that someday we would be able to have real conversations with him where he could express what he was thinking and feeling. Now that the words flow more easily for him, we are thankful that someday has arrived. When we couldn’t take him any place and basically kept him under house arrest because his behavior was so unpredictable, we hoped that someday we could enjoy typical family outings. Now, as we sit with him at restaurants and concerts and sporting events and family gatherings without any fear that he will erupt in anger, we feel fortunate that someday has arrived. When at least one of us always needed to be with him because we didn’t trust what he might do unsupervised, we waited for the day when he could behave himself without constantly being accompanied by us. Now, he goes off on his own to read, watch television, do Google searches on his iPad, and Ed and I never worry about what he’s doing because he has regained our trust. Someday has arrived, and it is sweeter than we could have ever imagined.

As we reflect on how autism has impacted Alex’s life––and in turn, ours––we realize that waiting is a key element. I can recall all the different things we were waiting for him to be able to do finally, such as talk, toilet independently, or sleep through the night, and eventually he was able to accomplish these seemingly simple tasks after many struggles. One would think that I would clearly remember the exact dates of these milestones––when those days we’d prayed for had finally arrived––but they remain vague in details yet strong in feelings of relief and gratitude.

What gives those days of accomplishment even greater meaning is that they remind us that God is always faithful and has a plan for Alex’s future. When I wonder if Alex will ever be able to live on his own, I remember that I wondered if he would ever be able to use the toilet on his own. When I worry what will happen to Alex when I’m not able to take care of him, I remember that God provided mental health caretakers who took precious care of him and knew what to do when we did not. When I pray and hope that God will heal Alex of autism, I remember all the times He restored Alex’s health and led us to caring and dedicated medical professionals who provided what Alex needed to be healthy. By looking back on how far we’ve come, I realize that someday we’ll look back on these times and our current concerns and know that God had us in the palms of His hands, just as He always has. Even though we don’t know when that day might be, we can trust as we wait, knowing that someday will eventually arrive.

“For the vision is yet for the appointed time; it hastens toward the goal and it will not fail. Though it tarries, wait for it; for it will certainly come, it will not delay.” Habakkuk 2:3

Sunday, September 4, 2016

"Sitting on a Rainbow"

 
“Somewhere over the rainbow skies are blue, and the dreams that you dare to dream really do come true.” ––“Somewhere Over the Rainbow” by Yip Harburg

One of the most upbeat and heartwarming stories in the news this past week focused upon the kindness shown to a middle school boy with autism. [To read an online news account of this story, please click here.] Florida State University football player Travis Rudolph was visiting Montford Middle School in Tallahassee, Florida, on Tuesday with four teammates. At lunchtime, he noticed a student sitting all by himself. This boy, Bo Paske, has autism and usually sits alone during lunch.

Travis Rudolph walked over to the boy and asked if he could sit with him, and the two of them struck up a conversation about football. Someone captured a picture of this special moment depicting the kindness of a young man toward a middle school boy with autism, and this photo has gone viral around the Internet.

Although Bo’s mother posted on Facebook that her son usually eats lunch alone at school, it doesn’t seem to bother him. However, she was understandably touched by the kindness of Travis Rudolph. She wrote, “I’m not sure what exactly made this incredibly kind man share a lunch table with my son, but I’m happy to say that it will not soon be forgotten.”

On Thursday, Bo’s mother, Leah, had the opportunity to meet Travis Rudolph on the television show Fox and Friends and to express her gratitude. Bo was also able to share his enthusiasm about the experience, telling about how Travis had lunch with him and even signed his lunchbox. However, this story just gets better. Bo happily described the experience: “It was kind of like me sitting on a rainbow.” Certainly, that compliment had to make Travis’ day, just as he had made Bo’s day special by choosing to eat lunch with him so that he didn’t have to sit alone that day.

Having taught middle school for more than thirty years, I know how difficult social interactions are for all kids at that age. Add in the impaired social skills often found in autism, and kids like Bo Paske wind up sitting by themselves. However, we need to teach people how to be comfortable with and compassionate to those who are different. One of the nicest compliments I have ever received came last year from one of my nicest honors students, who wrote me in a letter that I had taught her: “Just because people are different doesn’t mean that they should be treated that way. Everyone deserves kindness.” However, I must give the credit to Alex, who taught me how to be comfortable with people who are different, an important lesson I now share with my students.

People probably have no idea how much those kind acts mean to kids with autism, who may even seem oblivious to their attempts to be nice. Fortunately, I have had the opportunity to witness how Alex reacts to people being kind to him and know that he definitely notices even seemingly simple acts. For example, Alex’s behavioral therapist and I take him to Burger King nearly every Friday afternoon for recreational therapy so that he can practice ordering his own food, using manners, carrying his tray, and eating in a restaurant. Once Alex became a regular customer, the cashier, Cassie, and the manager, Tammy, took a special interest in him, and now the three of them are on a friendly first-name basis. Alex lights up with a big smile when he sees these ladies and says hello to them, and they seem equally pleased to see and greet him. In fact, the other day, the cashier told me that she and the manager tease each other about whom Alex likes best, based upon the smile he flashes at them. Then she commented on how sweet he is, which, of course, made my day.

As Alex’s mom, I feel affection and gratitude toward those people who see past the autism-induced awkwardness to the pure and sweet heart of my son. In addition to the broad smile he gives them, I also see him shudder with delight that someone knows his name and acts happy to see him. Moreover, I know that these kindhearted people hold a special place in Alex’s heart because he asks God to bless them specifically in his nightly bedtime prayers.

Kind souls like Travis Rudolph and Cassie and Tammy, who see past the differences in our kids with autism and make the effort to make our children with autism feel welcome, are a blessing. Simply acknowledging the presence of our kids with autism means more than they know to these special kids and their parents. Furthermore, that kindness will be richly rewarded in unexpected ways. After all, what could be better than to be responsible for making a child feel like he was “sitting on a rainbow” or to be included in the heartfelt prayers of a young man asking for God to bless those who matter most to him?

“Don’t forget to show hospitality to strangers, for some who have done this have entertained angels without realizing it!” Hebrews 13:2