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