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

Sunday, March 30, 2014

One in 68


Last week, the United States Centers for Disease Control and Prevention released their newest statistics regarding the identified prevalence of autism spectrum disorders, and the numbers are staggering. According to their current data, one in 68 children has autism. Moreover, nearly five times as many boys have autism as girls do, which means one in 42 boys has been identified as having autism. As an autism mom who constantly does research on autism and as a teacher of thirty years who has witnessed the increase first-hand, I probably was not as surprised as most people were to see how common autism has now become. [To read the CDC report on autism prevalence, please click here.]

While the actual numbers are disconcerting, the rapid rate of increase should indicate something is clearly amiss. Specifically, in 2000, based upon the birth year 1992 (in which I would include Alex since he was born at the very end of 1991), the rate of autism was 1 in 150, as it was also in 2002. In 2004, the prevalence increased to 1 in 125, and in 2006, the rate increased to 1 in 110. Two years later in 2008, the statistics jumped to 1 in 88. Now the current research, based upon 2010 data of children born in 2002 has risen to the current rate of 1 in 68 children. I’m not a math whiz like Alex, but the increase in ten years from 1 in 150 to 1 in 68 should serve as a wake-up call that something is desperately wrong to cause such an epidemic of a lifelong disability.

As I read various articles this week that discussed the increased rates of autism, the seeming lack of concern in the mainstream media bothered me. I suppose some people think that if they don’t have a child with autism, this is not their problem. However, the CDC also shares economic figures that should concern our society. According to their data, the average medical expenditure for a child with autism is 4.1-6.2 times higher than that for typical children. These increased costs will affect insurance rates and will increase Medicaid spending for children who receive disability benefits. To put this economic burden into perspective, the CDC estimated in 2011 that the total societal expense for caring for children with autism would cost over nine billion dollars per year. With rapidly increasing numbers of children diagnosed with autism, this expense will only rise to even greater costs. Consequently, autism will impact everyone, either directly or indirectly.

On Tuesday, the beginning of April will mark yet another Autism Awareness Month, or as some autism groups prefer to designate it, Autism Action Month. With increased numbers of children who have autism, awareness should no longer be a real issue. However, action needs to be taken to help those affected with autism and to figure out what is causing the rate of autism to increase dramatically. Essentially, three areas need to be addressed regarding autism: cause, cure, and community resources.
Despite several years and billions of dollars spent on autism research, a clear cause of autism has not been established. While the medical community insists the increased vaccination schedule has had no impact on increased autism rates, the possibility that vaccines may be a contributing factor has not been ruled out completely. Even though doctors and drug companies assure parents that vaccines are completely safe and necessary, many parents believe a link exists between autism and immunizations. This month, an article entitled “Baby Monkeys Develop Autism Symptoms After Getting Popular Childhood Vaccines” described research done at University of Pittsburgh in which infant monkeys who were given childhood immunizations developed autistic symptoms while their counterparts who were not given vaccines did not. [To read this article, please click here.] Certainly, vaccines are important to public health, but their safety—especially in light of the autism epidemic—must be established. If vaccines are not a cause of autism, the medical community needs to find a definite cause of autism. As two of my close friends are pregnant, I have watched them struggle with making decisions regarding flu shots and whooping cough vaccines during pregnancy and their fears about how those shots could affect their unborn babies. Their doctors tell them these vaccines are important to protect their babies, but they worry if what is supposed to help their children could harm them instead. How can the medical community truly assure parents when they, themselves, have no good idea what really causes autism?

Another issue that must be addressed is curing autism. Even though adults with high functioning autism find this suggestion offensive, the vast majority of children with autism suffers from medical issues, such as digestive problems, has great difficulty communicating, and requires constant supervision to keep them safe, especially since nearly half of them tend to wander away from places of safety. Again, the mainstream medical community has offered very little to help these children and has often been critical of those doctors who recommend more holistic approaches, such as diet and nutritional supplements. As I have mentioned in previous blog entries, we have followed the work of doctors whose children have autism, knowing that they will aggressively pursue ways to help their children yet will not endanger them with risky treatments. More research needs to be done to find ways to treat and cure autism so that these children and their families do not need to suffer.

Finally, community resources need to be available now for those families who have children with autism, especially since no definitive cause or cure has been established. Critical therapies, including speech, occupational, and behavioral therapies, are expensive and often not easy to find. Because of the rapidly increasing numbers of children with autism, many agencies that offer these therapies have long waiting lists for services. Moreover, many families cannot afford the cost of these therapies and find themselves on waiting lists for years to receive state disability services. As children age out of the educational system when they turn 22, they will need adult services, which are even harder to find. For example, we have had Alex on a waiting list for a day program for nearly two years. Fortunately, our job schedules permit one of us to always be home with him, and we can afford financially for me to work part-time, which accommodates Alex’s needs. However, many families must make huge sacrifices to care for their adult children with autism as they wait for community services. Until a definitive cause and cure for autism is found, community resources must expand rapidly to address the autism epidemic and to be available to help these families dealing with autism.

One in 68 children has autism. One in 42 boys are affected. Something must be done to help these children, especially if the statistics continue their trend of increase. At what point will our society not just be aware, not just accept, but act? As someone who places much more faith in God than mankind, I keep praying for rescue for these children and their families, and I keep searching for answers that may help my child and others who are more than statistics—they are God’s children, too.

“Now rescue Your beloved people. Answer and save us by Your power.” Psalm 60:5

Sunday, March 23, 2014

Family Restrooms


One of the nicest features about the town where we live is the variety of local parks. Recently, our city leaders have sought input regarding the renovation of two older parks and the expansion of the newest park. A group of parents in our community whose children have special needs have done research, discussed ideas, collaborated, and presented ways that these parks could better accommodate people with disabilities. From considering alternatives to mulch under playground equipment that would be easier for wheelchair access to investigating the best swings for special needs children, these parents have made requests that would benefit not only their children but also other children now and in the future who have similar needs. Besides accessibility to playgrounds, these parents have suggested that the parks offer family restrooms. Seeing the value of this concept, the parks department has indicated that the expansion of the newest park and the redevelopment of the old children’s playground will indeed include family restrooms.

While we are fortunate that Alex does not have major physical limitations and is toilet trained, we would have concerns about his using a public restroom without one of us being there to assist him. When we do things as a family, Ed could take him to the restroom if needed, but when I take Alex places by myself, I worry that he will need to go to the bathroom. Since he is now twenty-two years old and six feet tall, he wouldn’t be easy to sneak into the women’s restroom with me, but in an emergency, that’s what would have to happen. Trying to avoid this scenario, before we leave the house, I ask Alex repeatedly, “Do you need to go to the bathroom before we leave? Are you sure you won’t need to go while we’re out? Don’t you think you should go now? When did you last go to the bathroom? Are you positive you don’t need to go to the bathroom before we go?” After the barrage of questions, Alex usually just decides it’s easier to make a quick trip to the bathroom before we leave than to listen to my nagging. Still, I worry when the two of us are out in public that he will need to use the restroom, and I will have to figure out the best way to accommodate his need. Family restrooms would be the ideal solution for us.

In doing some reading about family restrooms, I realized that these facilities not only benefit children with special needs who require the assistance of parents or caregivers but also any parents of children of the gender opposite theirs. For example, fathers would prefer not to take their young daughters into the men’s room, but they may not be comfortable with their daughters going into the women’s restroom alone. Or, as in my case, mothers don’t want their sons going into the men’s room alone but realize that other women may not be comfortable with boys, or especially a young man, being in the ladies’ room. In addition, older people with disabilities may prefer family restrooms so that their spouses can assist them. With Alex we have two primary concerns regarding using a public restroom alone. First, his lack of social skills could make him vulnerable to a negative interaction with others. He could be easy prey to someone taking advantage of his gullibility, or someone may find his awkward behavior, such as not giving enough personal space, annoying or threatening. Another issue we are currently dealing with is his carelessness about making certain he pulls up his pants completely after toileting. Without our reminding and even help with adjusting his clothing, he could offend others by having his rear end partially exposed. Family restrooms could prevent any of those scenarios for us.

As this discussion regarding the addition of family restrooms in the city parks has evolved, parents of special needs children on a local Facebook group have noted and shared locations of family restrooms in the area, including stores, restaurants, libraries, and fitness clubs. This discussion has made me much more aware of family restrooms with the hopes that if I know where they are, I’ll never need to use one with Alex. Yesterday, we took him to the Indiana Dunes Visitor Center to view the various exhibits they have in conjunction with our nearby state park. As this was my first time to visit the center, I noted the various displays and amenities offered to visitors and was surprised to see that in addition to the restrooms for men and women, a third option was available—a family restroom. Although we didn’t need to use this facility, I was pleased that the visitor center offers this accommodation for those who do need it.

With the increasing rates of autism, more and more parents are going to find themselves caring for children and eventually adults with autism. As we try to integrate our children in the community by taking them out in public, we will need to have restroom facilities that accommodate their special needs. Family restrooms provide an ideal solution to the problem not just for parents and caregivers of special needs people but also for any parents who do not want their children to go to public restrooms alone. Until family restrooms become more common, I’ll keep badgering Alex before he and I leave for mother-son outings and keep my fingers crossed that we never have to sneak into the women’s restroom together. However, that could make an interesting blog entry.

“Two people are better than one. They can help each other in everything they do.” Ecclesiastes 4:9

Sunday, March 16, 2014

The Luck of the Irish


Most of the time, I try not to think about it, to shove it from my mind when I remember or to think about it rationally as a time we somehow, through the grace of God, survived. Other times, I feel a gratitude that we did get through the time of uncertainty and fear, coming out better and stronger. Sometimes, though, something will trigger a memory that will nearly take my breath away, and I remember vividly that period in our lives I try desperately to forget. Twice this past week, I had those moments where I had to catch my breath and remember to be thankful for blessings that came out of that time. Specifically, seeing shamrock decorations for St. Patrick’s Day and a comment Alex made took me back two years ago to when we had to hospitalize him in a locked psychiatric ward for extreme anxiety and aggression.

Two years ago on St. Patrick’s Day, Alex awakened extremely agitated and combative, and we decided to take him to the emergency room, hoping to get some medical intervention after months of unsuccessful attempts to get help for his increasingly erratic and aggressive behavior. After waiting for more than an hour for a psychiatric consult and basically being ignored by the ER staff, we decided to take him home because the waiting was making him even more upset. During this wait, I remember seeing all the shamrocks decorating the ER and thinking that I envied those who were celebrating that holiday when we were struggling to figure out what was wrong with our son and getting no help. The only good thing that came from that ER trip was that a doctor told us that our local mental health facility would not consider admitting Alex because he has autism, which made us realize that we would have to find another facility if he needed in-patient treatment.

Frustrated by our experience, we took him home, where he was reasonably calm the rest of the day. However, in the middle of the night he awakened more upset and agitated than we had ever seen him, and we struggled to subdue him. Knowing this was more than we could handle, we reluctantly called the police to help us restrain him so that I could give him an injection of Ativan to sedate him since he refused to take Ativan by mouth. With the kind assistance of three police officers, Ed and I were able to give him the shot he needed to settle down. Then we knew we had to do something while he was still calm. I began rapidly searching online for nearby hospitals with mental health departments and discovered the nearest one was about a half hour away. I called their 24-hour phone number and asked if they treated patients with autism and was told they did. The woman on the phone told me to bring him to their hospital’s ER, where he could be assessed before he would be admitted to their behavioral medicine department. Grabbing a few things, the three of us along with my parents headed for the hospital, hoping and praying we would find help there. We arrived at the ER, where we found kind and compassionate staff took our concerns seriously, and Alex was admitted that Sunday morning. While we were upset that he needed in-patient treatment, this was the beginning of his healing. [For more details about Alex’s hospitalization, please see my blog entries from March, April, and May of 2012.]

Alex never talks about those weeks of being in the hospital. We don’t mention them, partly for fear of upsetting him, knowing that he was scared about being away from home for the first time in his life, but also because we don’t like remembering that sad time of our lives when we didn’t know what was going to happen. This week, Alex had a minor panic attack where he became slightly agitated—a far cry from those days were he became terrified and aggressive—but was able to calm himself quickly. When I asked him why he was upset, he told me, “Don’t remember things in 2012.” This inability to remember something two years ago bothered him because his memory is quite keen. Trying to reassure him, I reminded him of some of the good things that happened that year, and he was able to remember those, which made him feel better. Since he was heavily sedated during and following his hospitalization, he probably doesn’t remember a lot of that time, and he may, like me, try to block out the bad memories so that he doesn’t have to remember them. Whatever the reason, I hate that he had to go through that, and I hate that Ed and I had to go through that as his parents.

While remembering those times is hard, we’re beginning to gain perspective on what good came out of those bad experiences. Certainly, we appreciate even more the improvements Alex has made since then, knowing how far he has come. We also know that the struggles we faced strengthened our faith as we trusted God to lead us, and He did. Before the hospitalization, we could not find professionals to help us, and now we have a fantastic team. Our family doctor, psychiatric nurse practitioner, pharmacists, behavioral therapist, music therapist, and case worker--all of whom genuinely care about us--see the good in Alex and work together with Ed and me to help Alex reach his potential, and they celebrate his accomplishments along the way. Moreover, we also now have financial assistance given for Alex’s disability to help us pay for services we had to pay ourselves for many years. Even though the memories of Alex’s hospitalization and the months that led up to it are painful, we know that time was part of the plan to help him move forward. Maybe the annual appearance of shamrocks that remind me of that time are actually meant to remind us that we, indeed, do have the luck of the Irish because things have changed so much for the better. While we don’t know what the future holds, we do know who holds our future, and we are thankful that God, who saw us through our darkest moments, will see us through every day with His grace and peace. In the words of an Irish blessing: “May joy and peace surround you, contentment latch your door, and happiness be with you now and bless you evermore!”

“This is what the Lord says: ‘Just as I have brought all these calamities on them, so I will do all the good I have promised them.’” Jeremiah 32:42

Sunday, March 9, 2014

Reaching Through Autism with Music


Today’s New York Times Magazine offers a compelling article written by the father of an adult son with autism entitled “Reaching My Autistic Son Through Disney.” [To read this article, please click here.] In this essay, author Ron Suskind describes how his family has dealt with autism over the years and how Disney characters and movies have helped his son with autism learn to communicate with others. Describing his son’s fascination with the Disney animated movies, the author explains that when his son was younger, he began quoting lines from the movies he’d watched over and over. While the experts described this behavior from his essentially nonverbal son as echolalia, or simply repeating what has been heard without any intended meaning, Suskind and his wife realized that these repeated lines had context and meaning to their son. By using lines from the movies their son had watched with such interest and joy, they were able to communicate with their son and begin to understand what he was thinking and feeling. As Suskind notes, “There’s a reason—a good-enough reason—that each autistic person has embraced a particular interest. Find that reason, and you will find them, hiding in there, and maybe get a glimpse of their underlying capacities.”

In reading this essay, I was taken back to when Alex was younger and loved watching Disney videos, too—like Suskind’s son, who is about Alex’s age, rewinding the videotapes to watch beloved scenes over and over again. Both of our sons, like many children in the 1990’s, grew up on Beauty and the Beast, The Lion King, and the classic Pinocchio, but our boys watched these movies with an intense fascination that other typical children did not. While Suskind’s son focused upon the dialogue that he repeated, for Alex the “good-enough reason” was the music that brought him joy. Besides the classic Disney movies, Alex was also a fan of the Disney Sing Along videos, where he could not only watch his favorite animated characters but also watch as the lyrics to the familiar tunes from the movies bounced across our television screen. For Alex, the written words had more power than the spoken words, and the beautiful melodies offered an added bonus to him.

Over the years, music continues to delight Alex, who has rather eclectic tastes in music, probably because his father and I have such different tastes in music. From Ed, Alex has learned to appreciate music without words, as they have listened to classical music and jazz together. Frankly, when they listen to Bob Dylan, the effect is essentially the same because no one can really understand the words he sings anyway. From me, Alex has learned the music of my generation, 1970’s and 80’s pop music, as we listened to everything from the faux singing family the Partridge Family to the real brothers Gibb, the Bee Gees. In addition, he learned the traditional childhood songs, such as “This Old Man,” which he has asked my mom to sing for him countless times over the years. As he has grown older, he has chosen as his favorite the genre Ed and I both like—country music, with its gentle melodies and storytelling lyrics.

Every Thursday afternoon, Alex looks forward to his music therapy sessions with his music therapist Noel, a young man who appreciates Alex’s enthusiasm for music. During these sessions in our home, I listen from the next room, enjoying the songs they sing and play together and the rapport they have established. Every week, Alex chooses to listen to the pre-programmed song on our electronic keyboard “Auld Lang Syne,” in homage to his love of New Year’s Eve and the tradition of the New York Times Square ball drop countdown celebrating the start of a new year. Most of the sessions, however, focus upon country music, and I enjoy listening to Noel play the guitar while the two of them sing. Actually, Alex has to be coaxed to sing loudly enough to be heard, but I can picture him in my mind swaying to the rhythm and smiling as he sings, because I know how he loves those songs. I also know that as they sing Garth Brooks’ “Friends in Low Places,” Alex is finding the lyrics funny and probably wishing that they could sing the extra verse Garth only does in the live version where he tells off the “little lady” in no uncertain terms. As they sing Johnny Cash’s classic “Folsom Prison Blues,” I wonder what Alex is thinking about the harsh lyrics: “I shot a man in Reno just to watch him die,” but suspect he is more engaged with how Noel’s voice goes into the lower range as he sings those words. My favorite song they sing together is another Johnny Cash song, “I Walk the Line,” probably because I think of how those lyrics describe my feelings for Alex: “As sure as night is dark and day is light, I keep you in my mind both day and night, and happiness I’ve known proves that it’s right. Because you’re mine, I walk the line.”

This week, Alex was especially excited about my mom’s birthday on Thursday and kept telling me that he wanted "to go to Nanny’s house." Because she had a cold, we weren’t able to go on Thursday. When I finally asked him why he wanted to go so badly, I discovered that he wanted to sing to her and have cake. I told him that we could go this weekend, but he could still sing to her over the phone. Happily and off tune, Alex launched into his rendition of “Happy Birthday” over the phone, much to the delight of my mom. Yesterday, he was able to get his wish, singing to her in person over a birthday cake, leaving out one of the lines, perhaps to get to the cake a little sooner. For Alex, the tradition of singing and cake makes birthdays special and creates joy that he can share with others.

Similarly, I was able to share a new song with Alex this week that we both enjoyed, a song my seventh grade students had told me about from the new Disney animated movie Frozen. After we had watched the excerpt from the movie in a You Tube video one day last week at the end of class, I found myself humming the song all day. Alex asked me what song I was humming, and because I sing off key, I pulled up the video for him so that he could enjoy the song the way I had. [To watch the video, please click here.] As we watched the animated version of “Let It Go” with sing-along lyrics, I was taken back to when Alex was little and we watched the Disney Sing Along videos. He smiled and swayed to the beautiful melody as I focused more closely on the lyrics, the words I found touching and true, “It’s funny how some distance makes everything seem small, and the fears that once controlled me can’t get to me at all.” Of course, we had to watch the video again, and Alex enjoyed it even more the second time because it was now familiar, a tune he would recognize if he heard it again, which would make him smile. Just as Ron Suskind’s son found Disney movies enabled him to connect to the world and bring him contentment, Alex finds joy in music that allows him to celebrate special days and to find simple pleasure in every day. In the words of Bob Dylan (that I understand only because I’ve heard Rod Stewart sing them): “
May your heart always be joyful and may your song always be sung. May you stay forever young.”

“He has given me a new song to sing, a hymn of praise to our God. Many will see what He has done and be amazed. They will put their trust in the Lord.” Psalm 40:3

Sunday, March 2, 2014

Fantastic February


Yesterday, as the month of March began, many people I know here in Northwest Indiana were delighted to see the end of February, which has been a very cold and snowy month. Somehow that shortest month of the year can seem like the longest, as winter fatigue descends and makes us more eager for the arrival of spring. Despite all the cold and snow that kept us inside more than usual, somehow cabin fever never really bothered me much this year. Even though I’m looking forward to warmer weather, more outdoor activities, and the ground being covered with grass and flowers instead of snow and frost, I have to say that we’ve had a fantastic February because Alex has been so good this month.

Since the bitter cold and icy roads often limited our activities last month, we had to look for ways to keep Alex entertained. Fortunately, he has been doing a great job of suggesting things he’d like to do and was understanding if weather had to change our plans. Perhaps the most significant indicator of his progress is that he has developed patience and no longer seems annoyed or frantic about having to wait for things to happen. Lately, he has become very good about finding things to keep himself occupied, primarily reading books and researching topics of interest on his iPad Mini. In addition, he has become engaged in watching American Idol, which keeps him busy and entertained two evenings a week.

A couple of weeks ago, he went to a middle school girls’ basketball game at my school for the first time, which he had been requesting to do for a few weeks. Although I was a bit concerned about how he would handle the noise, especially in our old gym where sound echoes in the exposed rafters, he didn’t seem overwhelmed at all. Despite the silliness of some middle school girls from another school sitting in front of us who were taking pictures of themselves doing stupid things and laughing more loudly than necessary, Alex appeared less annoyed by them than I was. He simply looked at them with a bemused smile. Even though I told him that we could leave anytime he wanted to go, he decided to stay for the entire game and seemed to have a great time following the action, smiling and pleased my school won the game.

Last Saturday morning, we took him to the dentist for his six-month checkup, and as usual, he was delighted to go. As I’ve mentioned in previous blog entries, Alex has always had good experiences at the dentist, so he looks forward to going every time. He practically skips to the door, and he always comes out of the appointment with a big smile, showing his teeth all shiny and professionally cleaned. Once again, his favorite part of the experience is seeing his beloved hygienist, who looks like a supermodel and calls him “Sweetie” in her deep sultry voice. After a good appointment where he had no problems or cavities, she told me that he was “wonderful,” and we were pleased that he had been cooperative for her and that he enjoyed his visit.

Later that evening, my school was holding a Mardi Gras festival for the students, and the teachers who were sponsoring the event had invited all staff members and their families to attend. While I wasn’t certain how Alex would handle being around all that noise and activity, we asked him if he would like to go. Eagerly, he decided that he wanted to go to the event and kept calling it the Mardi Gras “meeting.” I explained to him that it was a party, and he was definitely enthusiastic about that. As soon as we arrived, he immediately wanted to know if there was food he could eat. After scanning the various food booths for potential gluten-free and dairy-free food, I decided his best bet was Mexican food. After surveying the choices, I looked for students whose cooking skills I believed were safest and chose the booth run by a very nice young lady who is one of my former honors English students. She prepared a walking taco without cheese for him, a bowl filled with corn chips, ground beef with taco seasoning, and lettuce. After finding a bench where the three of us could sit, Alex happily devoured his food with a bottle of orange Fanta to drink.

While we were there, some of my colleagues came over to say hello, and Alex was polite enough to respond between bites of his food. After he finished eating, he enjoyed walking around the gym to see all the game booths and even won a prize—a sucker—on a game in which he had to spin a wheel. Mostly, he liked watching all the various activities and seeing the middle school kids having fun, especially during the tossing of Mardi Gras beads. Despite the loud music, constant motion, and the inevitable noise made by more than four hundred middle school kids having fun in a gym, Alex never seemed the least bit overwhelmed, and his smile indicated he was having fun. In fact, Ed, who isn’t used to being around middle school students like I am, commented that Alex handled all the noise and confusion better than he did. Once again, we were pleased that Alex not only behaved very well in a new situation, but also that he had such a good time. When we came home, he told us that he wants to go to Mardi Gras again next year.

To most people, these rather ordinary experiences may not seem like much of an accomplishment, but for us, we realize how much progress Alex has made in his ability to cope with new and sometimes overwhelming experiences. The progress he has made indicates something we are doing—behavioral therapy, music therapy, medications, nutritional supplements, or a combination of all of these—is working well. Maybe even just giving him opportunities to try new things while we are there to support him has helped.  Whatever the reason, I’m convinced that God has guided our steps to help Alex, and we are thankful for the improvements that allow him to participate in activities that enhance his ability to enjoy life.

“So I recommend having fun, because there is nothing better for people in this world than to eat, drink, and enjoy life. That way they will experience some happiness along with all the hard work God gives them under the sun.” Ecclesiastes 8:15

Sunday, February 23, 2014

Social Skills in Adults with Autism


Yesterday, I was reading a rather discouraging article about autism in adults entitled “Social Skills, Contentment Evade Adults with Autism” by Jessa Netting. [To read this article, please click here.] Based upon two studies of adults with autism (which is a field with limited research since most studies focus upon children with autism), scientists found that while adults with autism made progress in some skills over time, they did not improve in others. Specifically, the studies found that adults with autism tended to improve in their adaptive living skills, which include tasks performed daily, such as grooming and managing money. Adults with autism also generally improve in their independent living skills—perhaps because their adaptive living skills progress over time—as evidenced by their ability to work at a job and live away from their parents. In addition, repetitive behaviors often found in children with autism tend to decrease in adulthood. However, these studies also found that language, cognitive, and social skills tend to remain stable in adults with autism and do not improve over time. Moreover, the research also showed that quality of life, which indicates contentment and satisfaction, tends to be lower in adults with autism than in typical adults.

Now that Alex is an adult, the findings of this research bother me because all parents want their children to reach their full potential and to find contentment in life. What bothers me more, however, is that this research goes no further at this point to discover why three critical skill areas—language, cognitive, and social—remain stagnant in adults with autism. While I’m not a scientist, I have had the opportunity to observe autism first-hand on a daily basis for more than twenty-two years, and I have some theories of my own about what may be occurring. When autism is first diagnosed in young children, professionals urge parents to seek early intervention at a seemingly frantic pace, emphasizing how critical early intervention is. After Alex was diagnosed, we enrolled him in special needs preschool, began speech, occupational, sensory integration, cranial, and visual therapies, and worked with a doctor on biomedical treatments. In addition, I did floor-time therapy with Alex to increase his interactive skills. Over time, these therapies are typically phased out when the child makes enough progress to “graduate” from the programs. As the child matures, more effort is placed upon independent living and adaptive skills so that he/she can function in life without needing parents or other adults to handle these tasks.

Another consideration for the lack of improvement in skills may be that at age 22, most students with autism no longer receive educational services. With limited community resources, many adults with autism may not be receiving the structured programs and training they need to continue developing their skills. Also, they may not be receiving therapies they did as children, such as speech, that may still assist their progress. If these adults are not getting the help they need in structured programs, they probably can’t develop the skills they need to be successful and to have satisfying lives. What can be done to prevent this stagnation of language, cognitive, and social skills so that adults with autism can find contentment in their lives? In time, the staggering number of children who have autism will become adults and will need support and services so that they can function in society and find fulfillment in life. I fear that communities are not preparing for that reality, and adults with autism and their families will suffer the consequences.

When Alex was 20, we placed him on a waiting list for a day program that serves adults with a variety of disabilities, hoping this would provide him with opportunities to continue developing his skills. Mostly, however, we wanted him to have the chance to interact with a variety of people so that he could increase his social skills. More than a year and a half later, we are still waiting and have accepted that we may be waiting a long time for that program. Fortunately, Alex qualifies for state disability benefits that provide services to help us improve his skills. As I explained in a previous blog entry, “Plan B,” we have been blessed with a wonderful behavioral therapist who works with us twice a week to address Alex’s anxiety, behavior, and social skills. Thanks to his excellent case manager, we were able to reconnect with our former music therapist, a young man who is a terrific role model for Alex. Three afternoons every week, we have these support services helping us improve Alex’s language, cognitive, and social skills as he interacts with these therapists and learns crucial life skills. With these interventions, Alex is getting better in many ways, and we are truly grateful for the progress he is making. Moreover, he is happy and content, which is a tremendous blessing.

On Friday, his behavior therapist planned an activity that focused upon life skills. She had Alex pick out a recipe he would like to make, and they made a grocery list of the items needed to make gluten-free and dairy-free banana raisin muffins. Then the three of us went shopping at the grocery store where Alex found the needed items and placed them in the grocery cart he pushed, and he paid the clerk when he was finished. After that, Alex and his therapist followed the recipe and made the muffins with her guidance. Although Alex and I have baked together over the years, this experience was novel because he was following the directions of someone other than Ed or me. Alex handled the activity very well, enjoyed himself, and felt a sense of accomplishment. In addition to activities like this, his therapist plans to take him to restaurants and have him order his own food; to prepare him they will practice with menus and social stories so that he will know what to say and do. While God has given us the resources and good people Alex needs to develop these skills, unfortunately, not all adults with autism have these opportunities.

As I re-read the article about adults and autism, I found one quote especially interesting: “What became increasingly obvious, the more we were looking at all the studies together, was that we just cannot make generalizations about adult outcomes in autism,” said Iliana Magiati, assistant professor of clinical psychology at the National University of Singapore. Perhaps the reason why generalizations cannot be made is because critical interventions can make a difference, as we have seen with Alex. As more children with autism become adults with autism, resources must be available so that they can continue to develop their skills. Only then will we have adults with autism who can lead independent and content lives, which is the hope of all parents whose children have autism.

“Getting wisdom is the wisest thing you can do! And whatever else you do, develop good judgment.” Proverbs 4:7

Sunday, February 16, 2014

Recent Brain Research and Autism


A few weeks ago, I ran across some fascinating autism research that led me to those rare and satisfying “Aha!” moments I occasionally enjoy when I’m looking for answers about autism. The first, which the CBS News reported last month, [To read this report, please click here.] came from research done at Vanderbilt University regarding why some children with autism have extreme reactions to sound. Through their studies, scientists discovered that for many of these children, sound is out of sync with the visual cues they see. Thus, a delay occurs between what they see and what they hear, much like watching a badly dubbed movie or a television show having technical difficulties where the words and pictures do not match. Specifically, the researchers determined that some children with autism have a sound processing delay in which they see the picture a half second before they hear the sound. The lead author of the study, Dr. Mark Wallace, professor of hearing and speech sciences and psychology, noted that this may explain why many children with autism cover their ears: “They’re trying to filter out that confusing information and focus on only one sense.”

To me this theory makes perfect sense, considering that even typical people sometimes close their eyes when they want to concentrate on something they need to hear or plug their ears when trying to read something in the presence of background noise, such as the television. I know that when I have tried to watch shows where the sound and pictures don’t match, I find myself closing my eyes to focus on the auditory input and get rid of the confusing visuals. However, my strength is in listening, whereas Alex, like many people on the autism spectrum, is quite visual. Blocking out sound instead would be preferable for those who rely heavily upon visual cues.

To help children with autism overcome this confusion between sight and sound, auditory processing therapy is recommended to speed up their processing of sound so that it matches what they see. While a variety of programs for this type of therapy exist, we did an in-home program known as Earobics, and Alex’s speech therapist also worked with him using the Earobics program. While this computer-based therapy focuses upon developing auditory processing, it also engages the child through a fun game-type format with entertaining characters, such as Katy the Caterpillar and Karloon, a clown with balloons. For Alex, this program definitely helped his ability to process what was said to him, and we were thankful to find a simple and relatively inexpensive solution to this problem. While this program is now marketed primarily as a way to help children learn to read, I still believe that children with auditory processing issues can benefit from Earobics. [To learn more about Earobics, please click here for their website.]

Another article I ran across a few weeks ago suggests that the brains of children with autism create more information while at rest. [To read this article, please click here.] Reported in Science Daily last month, this research from Case Western Reserve University and the University of Toronto found that children with autism typically create 42% more information than typical children when the brains of both groups are at rest. Under the direction of Roberto Fernandez Galan, an associate professor of neurosciences at Case Western, this study focused upon recording brain activity using magnetoencephalography (MEG).

Because children with autism seem to produce significant information while their brains are resting, the scientists theorized that this phenomenon may explain some stereotypical behavior and misconceptions associated with autism. For example, people with autism are thought to be detached from their environment and less interested in social interaction. The scientists believe that this excess production of information from external stimuli may explain why people with autism sometimes withdraw into their own worlds: they are focusing upon all the additional information their brains are producing. We have seen this with Alex, who appears to spend a great deal of time daydreaming, yet will suddenly make comments reflecting interesting insights. This research also supports the “Intense World Theory” of autism developed by neuroscientists Henry and Kamila Markham, also parents of a son with autism spectrum disorder. In this theory, autism results not from cognitive deficits but from neural circuitry that hyper-functions, causing a state of over-arousal, as noted in sensory overload common in people with autism. [For more information about Intense World Theory, please click here.]

According to the Intense World Theory, people with autism find themselves overwhelmed by their own emotions and the emotions of others. While people with autism are mistakenly perceived as lacking empathy or concern for others, they actually care deeply, to the point that they must shut down and withdraw from others. In addition, people with autism often develop rigid routines in an attempt to control their environments, relying upon details and repetition to cope. With Alex, we have noted that he worries about others, especially their health, to the point that he becomes anxious and upset. Clearly, he does not lack empathy; he just doesn’t know how to deal with his emotions. Also, he establishes routines and relies upon measurement, such as time and height, to classify and organize. What looks like obsessive-compulsive behavior may actually be a brilliant coping skill to deal with a brain that takes on too much information. However, sensory integration therapy and behavioral therapy seem to help him deal with an overwhelming world. Hopefully, continued research into how the autistic brain works will reveal that instead of being a disability, the mind of the person with autism could be assisted with therapy to reveal greater strengths and insights than ever thought possible.

“That is what the Scriptures mean when they say, ‘No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love Him.’” I Corinthians 2:9

Sunday, February 9, 2014

The Small Stuff


Blame it on cabin fever, wacky hormones common in women my age, or my need to control all the little details of life. Whatever the reason, little things are getting on my nerves this week. Normally, I’m reasonably good-natured and take things fairly well in stride. Being an autism mom has taught me not to sweat the small stuff in life. However, this week I have found myself aggravated to the point I can totally empathize with my equally good-natured close friend who sometimes confides in me that she wants “to punch people in the face.” As her ally, I have offered to hold the offenders while she vents her frustration, knowing that neither of us, both petite and gentle souls, would ever act on these feelings of irritation. Sometimes just saying it aloud makes both of us feel better.

Last week when “official” groundhog Punxsutawney Phil saw his shadow, tradition holds that spring won’t arrive for another six weeks. Of course, no scientific basis for the groundhog’s prediction exists, but somehow the “confirmation” of the likelihood that winter will continue for another month and a half makes me weary and wanting to punch the groundhog in the face. (Of course, I would never really take on the rodent because frankly those things are creepy with their big teeth.) Last winter we only had six inches of snow total here in Northwest Indiana; this year we have had ten times that amount, along with extreme temperatures and wind chills well below zero that have limited time outdoors. While I generally don’t mind snowy cold weather that much, this year’s extreme weather has pushed me to my limit.

On top of the weather, little aggravations with my job are getting to me more than they usually do. My seventh grade students who want to sharpen their pencils in the middle of class despite constant reminders to do so before class starts and then forget to use those same pencils to write their names on their papers are testing my patience midway through the school year. I find myself counting to ten so that I don’t unleash my irritation on the sixth student who fails to follow the guidelines, and so far, I’ve been successful in keeping my annoyance under control by sighing softly instead of nagging them. This is good.

Even when I’m trying to keep things rolling along, unexpected events can require making changes I’d rather avoid. A few weeks ago, the local compounding pharmacy that makes Alex’s progesterone cream to treat his acne and inflammation burned down in a terrible fire. Although they were able to refer me to another compounding pharmacy until they are able to relocate, I felt sad to lose them even temporarily because their staff has always been helpful, kind, and efficient in billing insurance as well as making refills automatically in a timely fashion. By contrast, I discovered yesterday that our mail carrier has not been making deliveries because the snow is piled high near our mailbox, despite Ed’s best efforts to clear snow from the street near the mailbox. After wondering why we didn’t seem to have mail for a couple of days, I received an e-mail from Amazon yesterday that a package I was expecting had been returned to them as “undeliverable.” I’m not certain why our newspaper carrier can deliver our newspaper to the mailbox faithfully, but our mail carrier apparently cannot. Hopefully, we will be able to resolve this problem soon.

Last weekend, looking for a distraction from little annoyances, I decided to get out and do some “retail therapy” by shopping alone. Telling Alex that I was shopping for girls’ clothes, I was able to escape from the confines of home and just wander down the housewares aisle at Target, even stopping to look at “girls’ clothes” so that I had told Alex the truth. Finding some pretty little dishes in the clearance aisle and a colorful scarf on sale, I had successfully conquered my winter blahs. I should have stopped there. When I went to another store, I found myself aggravated by a clerk at the checkout. She asked me if I had any percent-off coupons, and I told her that I thought I had a 20% one that I had left at home. She snippily informed me that there weren’t any current 20% off coupons but that she would give me 15% off, acting as though I were a liar and she were doing me a favor. Despite my desire to leave the item on the counter and come back with the 20% off coupon (which I found when I came home) to prove her wrong, I took the high road and thanked her for her “generosity.”

Yesterday, I had to call in some of Alex’s prescriptions for refills and was told by the robot voice for the automated refills that two of them were out of refills, requiring the pharmacy to check with the doctor. Knowing that this information was incorrect and that I couldn’t hurt the automated voice’s feelings, I said, “No, Stupid—you’re wrong,” and I hung up the phone annoyed. After doing some checking of Alex’s records (and I am a whiz when it comes to keeping track of records, leading my colleagues to refer to me as “Pam-o-dex”), I discovered that the automated system was referring to the old prescription from August that had run out of refills and not the updated one from December. After calming down, I called to talk with a real person and was fortunate to get my favorite pharmacist who was not only pleasant but also was able to fix the problem immediately. She could teach the snippy clerk at Kohl’s a lesson in customer service.

On top of the little aggravations, this week Ed has had additional obligations with his job, which has shifted the balance of responsibilities for Alex even more heavily to my side of the parenting. From the time that I get home from working with my pencil-sharpening seventh grade students until the time Alex goes to bed, he has been almost exclusively my responsibility because Ed hasn’t been home. Aside from the stresses of taking care of a child with autism, I foolishly add to my responsibilities my own expectations of keeping everything perfect. Several times this week, I have heard in my mind the sweet voice of the late Karen Carpenter singing, “I know I ask perfection of a quite imperfect world and fool enough to think that’s what I’ll find.” Then I remember that not everything in life is going to run smoothly, no matter how hard I try to control things.

Yesterday, as I was thinking about how I’ve been getting frustrated lately with those who are not as organized as I am and with the little things in life that arise to interrupt my careful plans, I had an “aha” moment. The reason why all these insignificant things are bothering me is that Alex is doing really well right now. In fact, he had three fantastic sessions this week with his behavioral therapist and his music therapist. Moreover, he and I have enjoyed our evenings hanging out together this week while Ed has been involved with meetings and receptions. Instead of fretting over what he’s doing or not doing, I am paying too much attention to things that I normally ignore. I’m sure these distractions keep me from truly enjoying his progress, and I must ignore them as I did when I was overwhelmed during Alex’s difficult phases. Instead of being frustrated with meaningless annoyances, I need to be thankful that God is moving Alex in the right direction. As the saying goes, I am now, “too blessed to be stressed.” So, even if the snow piles up, my estrogen goes down, and my OCD runs rampant, I am thankful that God, who is even better organized than I am, has everything under control and is making Alex better. Nothing in my life is more important than that.

“But as for me, I will sing about Your power. Each morning I will sing with joy about Your unfailing love. For You have been my refuge, a place of safety when I am in distress.” Psalm 59:16

Sunday, February 2, 2014

Simple Blessings


Like any parent, I spend a lot of time brainstorming ways to help my child. As an autism mom, those concerns often require a creativity to meet Alex’s needs. Sometimes things fall into place so suddenly that I’m convinced God has had a hand in the matter, creating simple blessings and reminding me that He is taking care of Alex and just allowing me to assist Him. Recently, I have seen how small things can bring great joy to Alex, and I know the idea behind them was divinely inspired.

In early December, Alex started asking every night if he could see the stars. From an early age, Alex has had in interest in astronomy, avidly studying the planets and constellations. In fact, at one point, he told us that he wanted to be an astronomer when he grew up. The reappearance of this interest probably motivated him to ask about seeing the stars. Unfortunately, we have had so many cloudy nights this winter instead of the clear skies he needed to see the stars. Night after night, I would have to tell him that the stars were hidden behind the clouds. Even though he was disappointed, he never became discouraged, for he would ask again to see the stars the following evening.

With Christmas approaching, I starting looking for gifts for Alex that would appeal to his renewed interest in astronomy and wished that he could, indeed, see the stars. Suddenly, an idea popped into my head—a projector than shone the constellations on his ceiling would be the perfect gift. As I searched Amazon online for something like I had pictured in my mind, I found the POOF Slinky Science Space Theater Light-up Ceiling Planetarium. Despite the funny name, this item seemed to be exactly what I was seeking with a reasonable price, and I ordered it for Alex. Of course, I was pleased that this gift has become one of his favorites. Every evening, he waits with anticipation for darkness to arrive and will excitedly ask if he can turn on the star projector. With the constellations shining brightly on his ceiling, Alex lies snuggled in his bed, happy now that he can always see the stars at night.

Another simple solution recently arose out of the blue that keeps Alex content in the morning. For several weeks, Alex has apparently pestered Ed every morning while I’m at work, asking the same questions repeatedly: “Where is Mommy?” and “When is she coming home?” and  “Is she shopping for girls’ clothes?” While the first two questions make sense, I can explain the third one. Whenever I want to go shopping by myself, I tell Alex that I’m going shopping for girls’ clothes—something he has no interest in doing, so he doesn’t feel as though he’s missing out on any fun. Anyway, even though Alex knew where I was and when I would be home and that I was not shopping, he needed to ask those questions. Similarly, he would ask me basically the same questions about Ed when he was at work in the afternoon: “Where is Daddy?” and “When is Daddy coming home?” and “Does Daddy have a meeting?” (He knew that Daddy wasn’t out shopping for girls’ clothes, so he had to come up with a new angle for that third question.)

As I thought about Alex’s routine of questioning our whereabouts, I realized that he needed reassurance that we were safe and that we would be home on time, and an idea popped into my head about how I could let him know where I was and when I would be home, even when I was at work. I decided that I would e-mail him every morning from work to let him know I was thinking about him and to let him know that I was fine and would be coming home soon. Fortunately, these simple notes have worked wonders, according to Ed, who is pleased that Alex doesn’t keep asking him the same questions all morning. Apparently, Alex looks forward to my e-mails, which not only make him happy but also ease any anxiety he has about where I am and when I’ll be home. Moreover, he emphasizes how important they are to him because every weeknight before he goes to sleep he reminds me to send him an e-mail the next morning.

Another example of how little things can mean so much to Alex occurred this week and involved a bit of mystery. Several months ago, I found in my mailbox at school a Kenny Rogers gospel CD with no note of explanation nor any identification as to who had kindly given me this thoughtful gift. Obviously the friend who had given me the CD knew I like country music and traditional hymns, so this was a perfect combination. I kept the CD at school for a while and would play it before students arrived, enjoying the inspirational songs. A few months ago, I brought the CD home and placed it on the shelf with other CD’s and to be honest had forgotten I had it. This week, Alex found the CD in the midst of several others and asked me if he could play it. As the first song, “Will the Circle Be Unbroken?” played, Alex danced happily around the kitchen. Listening to each song, Alex showed contentment as he smiled and swayed to the music. As the familiar hymn “Leaning on the Everlasting Arms” played, I heard him softly singing along with Kenny Rogers. As much as watching Alex brought me joy, I suspect that Alex’s happiness pleased God, too.

That evening I posted on Facebook about my mysterious CD and the joy it brought Alex and me, hoping that the person who gave me the CD might reveal himself or herself. Although I still don’t know who gave us this gift, I found the comments that my friends and family made to be interesting and insightful. One friend commented that only God would know how much those hymns would mean to Alex and had prompted someone to give that gift, not just to me, but also ultimately to Alex. I would add that in blessing Alex unexpectedly, my blessing was even greater than the CD because Alex’s joy brings me great joy as his mother. A simple act of kindness blessed both of us in ways only God could foresee. As I sometimes get bogged down in the day-to-day tasks of caring for Alex, I need to remember that God always takes care of our needs, even in the seemingly small ways that remind us of His presence, goodness, and faithfulness.

“I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers!”  Isaiah 65:24


Sunday, January 26, 2014

Talking About Autism


Yesterday I read an interesting article on the Woman’s Day magazine’s website entitled “9 Things Never to Say to a Parent of a Special Needs Child.” [To read this article, please click here.] Citing comments that mothers of special needs children have had people actually say to them, the article suggests why these remarks might be offensive and offers alternatives that may be more acceptable. While I can understand why some of these comments might seem rude or hurtful or just nosy, I really think that most people who ask questions or make comments like these genuinely don’t intend them in a negative way. In fact, I believe that many people honestly want to help, but they may not know how. Having been an autism mom through toddler, teen, and now twenties phases, I have a little different perspective that has come over time, and I offer my thoughts on some of the comments the article deems taboo.
“Wow, you must be so busy.” The article describes this remark as having a condescending tone, which I personally don’t see. All parents are busy, and special needs parents often have additional responsibilities, such as coordinating various therapies for their children. Yes, I’m busy dealing with Alex, and I’m thankful for organizational skills that help me keep things rolling and make me a queen of multitasking.
“You should take care of yourself so that you can take care of him.” The article suggests that this comment is unrealistic because special needs parents are too busy and/or have too many responsibilities to take time for themselves. However, the analogy of the oxygen masks on airplane flights seems to apply well: parents must place the masks on themselves before putting them on their children. In order to help their children, parents must address their own needs, too. In fact, I have told other autism moms that they need to take care of their child’s mother; too often, we think we must always put our own needs last. Being a parent requires sacrifice, and being a special needs parent requires additional sacrifices. Yet, we cannot take care of our kids if we are not at our best.
“We’re only given what we can handle.” This comment, which is often enhanced with religious significance by attributing the giver as the Lord, is described in the article as being a “meaningless platitude.” I suspect that parents who find this comment offensive either feel uncomfortable that they are perceived as stronger than other people, or they don’t appreciate viewing their child’s disability as a test from God. On the other hand, this statement is likely intended as a compliment and a reassurance that they can cope with the obstacles that come with raising a special needs child. I’ve always liked Mother Teresa’s quote about dealing with difficulties: “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”
“Have you tried…?” According to the article, this comment annoyed parents who didn’t appreciate advice from others who were not special needs parents. One mother remarked, “You have no idea what you’re talking about.” Although other people may not have first-hand experience, I appreciate when others show interest and care enough to share research or information they have found on autism. Because I have spent so much time researching autism, I usually have already heard about the information, but I’m happy to discuss it and look for new insights. Over the years, we have tried a variety of approaches hoping to help Alex, and I’m always on the lookout for something that we may not have tried yet. Instead of viewing that question as intrusive, I see it as helpful.
“What’s wrong with him?” While I tend to agree with the article that this comment is probably rude and nosy and certainly could be phrased better, I think that the motive behind it may be concern. Maybe I’m not as offended because I’ve asked the question about Alex myself in frustration, fear, and/or bewilderment. In fact, in moments of impatience, I admit that I have asked Alex, “What is your problem?!”  And then I remember he can’t help what autism has taken away, which motivates me even more to attempt to regain what has been lost and to appreciate the progress he has made in spite of the obstacles. That keeps me busy as I try to take care of Alex and myself, remembering that I can handle all things through Christ who strengthens me, and as I try different ways to eliminate what’s wrong to make him the best he can be.
“But you belong to God, my dear children. You have already won a victory over those people, because the Spirit who lives in you is greater than the spirit that lives in the world.” 1 John 4:4