Sunday, April 27, 2014

"Knockin' on Heaven's Door"

An old saying goes, “A steady knock wears the rock.” Over the years, I’ve discovered that raising a child with autism often needs that steady knock, requiring immense patience, attention to detail, and confidence that eventually the task will be rewarded as the old makes way for the new. For some time, dealing with certain behaviors of Alex’s has been consistent knocking, yet feeling as though we’re not making much progress. Lately, however, we’ve had that satisfaction of where we make sudden headway and truly see the end results in sight. These moments give us encouragement to keep plugging away and make us thankful that our efforts are worthwhile as we are moving forward.

In December, we increased Alex’s behavioral therapy sessions from once a week to twice a week with the hopes that the additional sessions would help improve his social skills. In working with his behavioral therapist, who is wonderful with Alex, we decided to dub these additional sessions “Fun Fridays,” where she, Alex, and I would go places and do things he enjoys. Our outings would be the equivalent of recreational therapy, which is designed to use skills in the community that have been learned in therapy, such as social skills and coping skills. In essence, these sessions require him to apply in the real world what he has learned in therapy. Before we leave for these outings, his therapist gives Alex a briefing, preparing him for things he may encounter and reviewing social and coping skills. She has made small cards with visual cues for me to carry in my purse in case Alex needs them that say things such as, “I can use my calming skills” and “Take deep breaths” and “Count to ten.” She also reminds him of common courtesies to use while we are out, such as saying, “Please,” “Thank you,” and “Excuse me.”

Overall, these Fun Fridays have gone remarkably well, and all three of us have enjoyed our outings to the library, the bookstore, and restaurants, as well as going shopping. As the weather gets warmer, we are looking forward to going to various parks to enjoy the outdoors. Several weeks ago, Alex decided that he really wanted to go to a local restaurant that is a retro-style diner, and his therapist and I decided that we would use that as a reward he could earn with good behavior over a month’s time. Actually, we had some concerns about how he might react to being in a restaurant that is typically quite crowded at lunchtime, and she wanted him to be able to order his own food, which required repeated practice over several sessions. However, he held up his end of the bargain and fulfilled his obligation to behave himself for the month, earning his trip to the diner for lunch. The day we took him for his reward lunch, the diner was completely full except for one table near the back. Although I had some trepidation about how he would cope with all the people and noise as well as having to wait, he handled the situation beautifully, even ordering his own food to his specifications: two Polish sausage without the bun and with grilled onions, cole slaw, and a medium Sprite. His therapist and I were pleased with how well the lunch went, and Alex really seemed proud of the reward he had earned.

Even with the progress Alex has made, thanks to therapy, medication for his anxiety, and healing that has clearly taken place, we still work on social skills that prove more difficult for him than most people. Like a small child, we constantly remind him to use social graces, such as thanking others for doing things for him. Despite modeling these behaviors for him and verbally cuing him many times daily, Alex, like many people with autism, doesn’t naturally think to use these polite phrases on his own. Last week, his therapist suggested that we try visual cues instead. Even though Alex will comply when we prompt him verbally, he hasn’t reached the point where he will say what he should on his own, and asking a twenty-two year old, “What do you say?” is becoming tedious. At first she suggested sign language, but Alex has always been resistant to learning signs in the past. However, I thought he might respond to numbers, and we tried holding up one finger for “Please” and two for “Thank you.” Immediately, Alex caught on to the system, which has worked like a charm. When I shared this new routine with Ed, he tried it with Alex, who correctly responded with the appropriate phrase for each visual cue. When Ed held up three fingers and teasingly asked Alex what that meant, without hesitation, Alex came up with his own clever idea, saying, “You’re welcome.” This simple and effective solution after years of trying to get Alex to use his manners has been the reward for us of that steady knock. While we wish we had thought of this idea years ago, we’re just thankful that he’s taken to the number system quickly and consistently and are hoping we can eventually phase out the visual cues so that he does what he should automatically.

As a reward for his good behavior and for faithfully responding to our one/two cues, we took Alex out to dinner last night at the diner he likes so much. Sitting in his favorite booth, where an album of Bob Dylan hangs on the wall (hence why we have dubbed this “the Bob Dylan booth”), Alex used his manners nicely and enjoyed his Polish sausage and cole slaw. He also liked listening to the oldies music playing in the background, correctly identifying the songs’ artists, including the Beatles and the Rolling Stones, thanks to Ed, who has taught him about classic rock as they have listened to music they both like together. At one point, Alex began swaying to the opening chords of a song he recognized, and he and Ed both smiled, knowing it was Bob Dylan, whom they love and I don’t. Suddenly Alex began to sing—perhaps applying the skills he has learned in music therapy—the words of the song, even more clearly and more in tune than old Bob himself: “Knock, knock, knockin’ on heaven’s door.” He continued to sing, unabashed and undeterred if he forgot a word, just singing every note and every word joyfully. To most parents, this would be no big deal, but for us, this showed us how far Alex has come. As Alex sang the entire song, I’m sure Ed felt pride as Alex sang the song of his musical hero, and I was moved to tears that our son who has struggled with speech and has lacked confidence in his ability to communicate could sing to his heart’s content. As I looked up on the wall, even Bob seemed to smile in bemusement; we just keep knock, knock, knockin’ and getting closer to heaven every day.

“And I say unto you, ask, and it shall be give you; seek, and ye shall find; knock, and it shall be opened unto you.” Luke 11:9

Sunday, April 20, 2014

The Shining of the Son

“Little darling, it’s been a long, cold, lonely winter. Little darling, it feels like years since it’s been here. Here comes the sun. Here comes the sun, and I say it’s all right.”—George Harrison

After a winter filled with bitterly cold temperatures and seemingly constant snowfall, this week finally felt like spring has arrived with sunshine and warmer temperatures. Although we awakened to snow on the ground earlier in the week, we have seen the changes that give us hope that spring is on its way. Yesterday, Ed, Alex, and I went to an Earth Day celebration at our county fairgrounds exposition center and were pleased that we didn’t have to wear our jackets because the weather was warm and sunny outside. This Earth Day event brings together various businesses and organizations that set up booths promoting environmental awareness. Our reasons for going are less noble: with no admission charge, it’s free entertainment, especially for Alex who likes to see the animals included in a few exhibits.

As we wandered around the three buildings offering displays and information, Alex was pleased to see three turtles (which are his favorite animal), a rabbit, and two cats. Other than that, he didn’t seem particularly interested in much else, but he patiently made his way to see nearly all of the booths. Because he didn’t say much, we weren’t sure whether he was enjoying himself or not. When we got back in the car, we asked him if he’d had fun, and he said yes. Thinking this might be just a cursory answer, Ed asked him how much he liked the program, and we were surprised when he told us “one hundred percent.” On the other hand, he never asked us when we were going home while we were there, so he probably did have a good time. Certainly, we were pleased that he enjoyed the outing, but we were also delighted that his behavior was excellent the entire time.

Last year, when we took him to the same event, we had him ride in his transport chair the entire time. Because his medications made him fatigued and unable to walk very far without tiring easily, riding in his wheelchair was a better option. If he decided he wanted to go home, we could quickly and easily take him back to the car. In addition, we still didn’t completely trust that he could behave himself, and the chair allowed us to control his movement so that he couldn’t reach anything he wasn’t supposed to touch. Yesterday, however, he walked the entire time because his energy levels are returning and his behavior has improved significantly. At one exhibit for energy-efficient insulation, Alex was fascinated by the digital thermometers that showed the difference between good insulation and poor insulation by shining a heat lamp on the two. Even though he may have been tempted to touch the thermometers or the lamp to see how hot it was, he kept his hands to himself, which showed the progress he’s made in controlling impulsive behaviors. We can trust him because he has become trustworthy again.

Two years ago, Easter was a mixed celebration for us. Alex had been released from his first hospitalization in the behavioral medicine department and was home after nearly a two-week stay. We didn’t know then that he would need two more hospital stays that spring. While we were thankful to have him home, the memories of the anxious, aggressive, and destructive behaviors that led to his need for intensive intervention were still fresh in our minds. Frankly, we were still afraid of him and his potential for angry outbursts. As I chose Easter gifts for him that year, I was mindful of finding small items that were unbreakable, wouldn’t agitate him, and wouldn’t hurt if he hurled them at us. While reflecting on that period of our lives is painful, we are reminded of how much progress he has made in two years, thanks to medication, intensive therapy, and the healing power of God. Instead of being impulsive, Alex has learned to be patient. Instead of being anxious, Alex is content. Instead of being aggressive, Alex is gentle and sweet. When our lives felt hopeless, God sent us the help we needed, and now we appreciate the changes that have made Alex better and our lives easier and happier.

In reflecting on Good Friday this week, I thought about the suffering Christ endured and the sorrow those who loved him felt. Being raised Catholic, Ed grew up with crucifixes, the images reminding of Christ’s sacrifice on the cross. As a Protestant, I was raised in churches with empty crosses, emphasizing the resurrection instead. Both of us have great affection for the Christus Rex, the Christ the King statue in the Valparaiso University Chapel of the Resurrection. In this representation, Christ is on the cross with a king’s crown and both hands raised in joyful victory. Perhaps this image blends the religions of our childhoods and binds our belief in the hope and the joy of the resurrection. On a much smaller scale, we survived the dark days of sorrow, fear, and uncertainty, and God has brought us into the light where we have joy, faith, and hope for the future.

This week, Victoria Osteen, the wife of Pastor Joel Osteen whose sermons and inspirational books have strengthened my faith, posted online the following quote: “Resurrection teaches us that God will always finish what He started.” Sometimes I fret about what will happen to Alex, especially when Ed and I aren’t around to look after him. However, this quote reminds me that God isn’t finished with Alex yet. If we look back two years to the terrible times, and even a year ago to the still slightly unpredictable times, we see that God has led us to a time of contentment and peace. Only God knows what plans He has for Alex and us, but I do believe that His plans are for good. As we now seem to be moving in the right direction, we look forward with hope to see where God will lead us and how He will finish what He has started in our lives. Happy Easter, indeed!

"The Spirit of God, who raised Jesus from the dead, lives in you. And just as God raised Christ Jesus from the dead, he will give life to your mortal bodies by this same Spirit living within you.” Romans 8:11

Sunday, April 13, 2014

Chili's Can't Take the Heat

“Sometimes good intentions just aren’t enough.” This quote from one of my favorite college professors has echoed in my mind this week in light of the furor over Chili’s restaurants bowing to public pressure. Last month, the family restaurant chain announced that as part of their Give Back Events program, they would be donating a percentage of their sales on Monday, April 7, 2014, to the National Autism Association. I’m sure they believed this was a good way to show support for Autism Awareness Month by supporting a major autism organization in April. However, they had no idea how much their good intentions would stir a public furor that was unnecessary, unfounded, and just plain nasty.

When Chili’s announced their philanthropic plans on Facebook, they unintentionally ignited a war of words as a heated debate arose on their Facebook page with people leaving comments regarding the causes of autism and threats to boycott Chili’s for their support of the National Autism Association. At the center of this controversy was the stance the NAA has taken upon the possible role vaccines may play in autism, as stated on their website:
"The National Autism Association believes: Vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions." This statement, which many parents of children with autism including myself believe is true for our children, arouses ire in those who fully believe that vaccinations are completely safe and have no connection whatsoever to autism.

While I certainly respect others’ rights to their opinions, especially if they have not witnessed autism first hand as I have, I don’t appreciate the name-calling tactics many of them use to support vaccine safety. The comments left on Chili’s Facebook page demonstrate bullying tactics, calling the so-called “anti-vaxxers” as “dangerous,” “irresponsible,” and even “nutty.” Those who choose to support their arguments by hurling insults lessen their credibility, especially when their comments include misinformation, lack of expertise, and grammatical errors.

After thousands of comments posted on their Facebook wall arguing about autism and vaccines, Chili’s made a decision: they caved under pressure. In announcing their decision to cancel their support of the National Autism Association fundraiser, they issued the following statement on their Facebook page:
“Chili's is committed to giving back to the communities in which our guests live and work through local and national Give Back Events. While we remain committed to supporting the children and families affected by autism, we are canceling Monday's Give Back Event based on the feedback we heard from our guests. We believe autism awareness continues to be an important cause to our guests and team members, and we will find another way to support this worthy effort in the future with again our sole intention being to help families affected by autism. At Chili's, we want to make every guest feel special and we thank all of our loyal guests for your thoughtful questions and comments.”

Perhaps even more disappointing than the comments people left on Chili’s Facebook page and Chili’s decision to revoke their support was the gleeful reporting of this event in the mainstream media with headlines that lacked objectivity. For example, CBS Philadelphia proclaimed, “
Chili’s Cancels Fundraiser With Group That Believes Autism Is Caused By Vaccinations,” followed by quotes presenting only the pro-vaccine side of the debate. Time magazine online was even less subtle with their position: “Chili’s Burns Anti-Vaxxers — and Probably Saves Some Kids’ Lives.” Similarly, Slate magazine published an online opinion piece by Phil Plait, an astronomer and father to typical healthy children, titled “Chili’s Reception: Restaurant Cancels Event With Anti-Vax Group,” in which he stated, “Last week, Chili’s made a mistake. The good news? They listened to reason and fixed it. The best news? It shows that reality can win out over nonsense if people speak up.” I’m not certain what has made Mr. Plait an expert on vaccines or autism, but I think that he, an astronomer, needs to remember that at one time in history people believed that everything in our solar system revolved around the earth and not the sun. Sometimes what is perceived as “reality” can in time be shown to be “nonsense.”

Until a clear cause of autism can be effectively proven, we need to investigate all possibilities and not discount any potential reasons, even if naysayers deem them nonsense. I often think of the scientists who discovered in the 1980’s that gastric ulcers were caused by bacteria found in the stomach. While their research proved true and made curing ulcers possible, these scientists were ridiculed and scorned for their theories that ultimately proved to be true. Perhaps a cure for autism will arrive in a similar fashion. If people want to think that my beliefs are crazy and dangerous, I can live with that, but I can’t live with not trying to discover why autism rates are rising rapidly. To accept this epidemic and not look for potential causes strikes me as truly crazy and dangerous.

When Chili’s bowed to public pressure and revoked their support of the National Autism Association, the NAA issued a gracious statement with no malice toward Chili’s or the critics whose verbal attacks cost the organization donations. NAA had planned to use these donations toward prevention and awareness of wandering, a common and dangerous issue in the autism community, since nearly half of children with autism wander away from places of safety, often with tragic endings. With regard to the Chili’s change in decision, NAA stated, “Thank you to all of our supporters, and thank you to Chili's for taking a chance on us. Though NAA has changed our mission and efforts in recent years to focus on autism safety, namely wandering prevention, controversial views about vaccines remained on our website. Because of guest feedback about these views, Chili's has opted to cancel tomorrow's event. We respect their decision and ask everyone to please speak words of love and kindness. NAA has evolved as our children's needs have evolved. Our Big Red Safety Box Program very much helps protect children and adults with autism from wandering-related emergencies. We will continue to provide boxes as funding becomes available.” Despite the hostility directed toward them, the NAA encouraged its supporters to speak words of love and kindness and made clear that vaccines were not the issue, the safety of children with autism is.

Honoring the request of an organization that does so much good for children with autism, I will say that I love my son with autism and appreciate those who show kindness to him. However, those who choose to attack autism parents need to know that we have literally and figuratively cleaned up enough messes, spoken for our kids who cannot speak, and fought the good fight. We won’t be silenced, and we won’t back down.

“God blesses those who are persecuted for doing right, for the Kingdom of Heaven is theirs. God blesses you when people mock you and persecute you and lie about you and say all sorts of evil things against you because you are My followers. Be happy about it! Be very glad! For a great reward awaits you in heaven. And remember, the ancient prophets were persecuted in the same way.” Matthew 5:10-12

Sunday, April 6, 2014

Measurement, Memory, and Mathematics

“Five hundred twenty five thousand six hundred minutes/Five hundred twenty five thousand moments so dear/Five hundred twenty thousand six hundred minutes/How do you measure, measure a year?” –“Seasons of Love”

Yesterday, we took Alex to a family restaurant for dinner, and as soon as we sat in our booth, he realized that he had forgotten to wear his watch. In the past, he might have panicked that he didn’t have his watch to keep track of the time, and we would have had to leave immediately. However, he has learned to roll with things much better lately, staying calm and solving problems. First, he looked around the restaurant for a wall clock, but there was none to be found. Then, he decided he would just borrow one from us. In a scene reminiscent of “Goldilocks and the Three Bears,” he tried and rejected our watches. Ed’s watch had the wrong date, which was unacceptable, and my watch was too snug on his wrist. Finally, I handed him my cell phone with the digital clock showing on the screen, and this item, like Baby Bear’s porridge, chair, and bed, satisfied Alex, who found this substitute for his watch to be “just right.” Crisis averted.

As I have mentioned in previous blog entries, Alex makes sense of the world by measuring it and keeping records of statistics that matter to him. His favorite subject has always been math, and he possesses almost savant skills in working with numbers, enhanced by his amazing visual memory. From memorizing nearly 1500 digits of the irrational number pi to remembering people’s birthdates to calculating math problems mentally, he has a gift for remembering and understanding numbers. To assist him with measuring the important aspects of his world, Alex always keeps his measuring tools close at hand, which are among his prized possessions. Calendars, clocks, tape measures, calculators, and thermometers line his bedroom desk and chest of drawers, ready when he needs them. Because he relies upon them greatly, he has more than one of each type of measuring tool in case he mislays one of them and can’t find it. In addition, he keeps notepads and pens handy to record his measuring data.

When dealing with measurements, Alex values precision. If I tell him something costs six dollars, he will correct me and say, “Or $5.99.” If I tell him something will last about a week, he will ask, “Approximately a week or exactly six days?” When his behavioral therapist or music therapist arrives for his sessions, he immediately records their precise arrival time on a notepad as he consults his watch. Even though I have told him that they will be here around 1:00, he wants to keep track of the minute that they actually ring the doorbell. We have also learned not to dispute him when he proclaims certain information about when past events have occurred. For example, he likes to keep track of gasoline prices and will tell us how much gas cost in a particular year. Even when the figures seem a bit off, I never question them. Whenever I go online to check his accuracy, I discover that he is always right, and I find his keen knowledge of the history of gas prices a little eerie.

While some people with autism have amazing abilities to calculate days and dates, I don’t really think Alex possesses that skill. So-called calendar savants can be given a particular date and immediately figure out what day of the week that date was. Recently, my aunt and uncle came to visit from out of town, and Alex commented that my uncle had been born on a Sunday. My uncle didn’t seem to know what day of the week he was born, but trusting Alex’s confidence, he thought that fact was likely. After looking up my uncle’s birth date on a perpetual calendar in the almanac, I confirmed that Alex was right about what day of the week my uncle had been born. However, I suspect that Alex probably had also used the almanac as his source of data instead of calculating the day in his mind.

Nonetheless, Alex does possess outstanding mental calculation skills. A couple of weeks ago, I asked him how he had liked the dinner I had made. After quickly assessing his plate, he told me he liked it “91.6 percent.” Although we’ve grown accustomed to Alex’s percentage rating scale for meals, we were surprised by this odd figure since he usually rates foods in less specific figures, such as 90 percent or 85 percent. When we asked him how he had arrived at that number, he said, “Pasta 90 percent, sauce 90 percent, Italian sausage 95 percent.” As I was trying to add up and divide those figures, Ed, who is much better in math than I am (and from whom Alex has probably inherited his math skills), quickly confirmed the accuracy of Alex’s calculations.

Similarly, yesterday Alex was telling me that he had a “little voice” in June of 2004. Alex has a great fascination with people’s voices, especially those of children, whom he says have “little voices.” I suppose he was reflecting upon when his own voice changed. After I figured out how old he would have been in June of 2004, I commented that he would have been twelve and a half years old in June 2004. However, he corrected me by noting that he was thinking of when he was “12.482 years old.” Fortunately, he shows patience with my lack of mathematical precision, seeming almost bemused by my approximation.

At the restaurant yesterday when he was using my cell phone clock as a substitute for his forgotten watch, Alex noticed the message on the bottom of the screen and asked me what “232 service days left” meant. I explained that my phone service is “pay as you go,” and that I had paid for a year in advance and had that many days left before I need to renew my phone. He didn’t respond, but then he quickly said, “November 24th.” Ed and I exchanged a look and then realized that Alex had rapidly calculated back to the date I had renewed my phone contract. When he said that, I remembered that I had signed up for a year of phone service around Thanksgiving, so his comment seemed likely. A couple of minutes later, Ed, who had been contemplative, commented that Alex was right because he had mentally calculated to see if Alex’s date was correct. The two of them astonish me with how quickly they can figure out in their minds the problems I need some time and a calculator to solve. However, I am grateful that not only has Alex inherited Ed’s math skills but that he also finds using numbers entertaining and satisfying, a way to make sense of the world that sometimes overwhelms him.

“Great is the Lord! He is most worthy of praise! No one can measure his greatness.” Psalm 145:3