Sunday, November 22, 2015

Thirty Thankful Thoughts

In preparation for Thanksgiving, many people take time during the month of November to reflect upon those things in their lives for which they are grateful. Some post daily statements of thankfulness on their Facebook walls, and others share their blessings around the Thanksgiving dinner table. Although I have developed a habit of thanking God through quick prayers throughout each day, even for seemingly trivial blessings like getting good parking spots, finding my contact lenses when I drop them on the floor, and enjoying the comfort of my bed, I also remember to thank Him for the great blessings in my life. This year I did not do daily postings on Facebook, but I sat down this morning to make a list of thirty things for which I am thankful and was amazed how quickly that list came to mind. Like my prayers throughout each day, some items on the list may seem obvious because of their importance, but other smaller ones carry impact because they, too, remind me of God’s goodness, especially those that reveal how far He has brought Alex in spite of autism. Without further ado, here are this year’s thankful thirty:

Family––We are always grateful to our families who have loved and supported us in all situations and who have celebrated Alex’s accomplishments with us.

Friends––I am thankful to my friends who have become family, taking special interest in Alex, praying for us, and understanding that he is always my first priority.

Financial Security––We are blessed that our job schedules coordinate so that either Ed or I (or both of us) can always be home with Alex. Even though I work part-time, our teachers’ salaries have always been enough to provide what we need to live a reasonably comfortable life, despite the added expenses autism has brought. We have confidence that God will provide what we need financially.

Nurse Practitioner––When Alex’s behavior became extremely difficult to handle nearly four years ago, we searched for a professional to help us. God led us to Michelle, who had experience working with young men who had autism, and she knew what to do to help Alex. Her expertise in finding the right mix of medications to treat his anxiety and subsequent aggression has completely changed our lives and made our home peaceful, a tremendous gift we never take for granted.

Pharmacists––Our pharmacists Anita and Kris not only do a terrific job helping us keep Alex’s medications straight and answering my various questions, but they also show kindness to him, greeting him warmly and asking how he’s doing.

Behavioral Therapist––After two years of working with Alex, Jennifer has become his teacher, confidant, cheerleader, and friend. Moreover, she has become all of those roles for me. Her guidance and support have been crucial in the tremendous progress Alex has made.

Music Therapist––Noel is one of those rare people who just understands Alex and brings out the best in him. Alex even expanded his limited wardrobe of striped shirts to flannel button-down shirts and graphic t-shirts because his role model, Noel, wears them. Although Noel’s personality is usually low-key, when Alex does something amusing or shows initiative by suggesting songs or spontaneously singing, he animatedly shares the experience so that I can enjoy it, too.

Director––The director of developmental disabilities at the agency where Alex receives music therapy and respite care is especially fond of Alex and makes a special effort to engage him when we arrive for music therapy. Laurie makes no secret of how much she likes him, telling me last week that he is “delightful.” In addition, she often compliments the job Ed and I have done as Alex’s parents, which is an added bonus.

Companion––We had to wait two years before finding a respite care worker for Alex, but she was worth the wait. Funny and sweet, Jessica understands Alex’s quirks and finds him very amusing. Although I know that he likes her as much as she likes him, he made his affection known for the first time recently when he spontaneously hugged her goodbye, which made her eyes fill with tears of joy.

Case Manager––Alex’s case manager, who oversees all his paperwork and finances with the state, is an energetic, smart, and friendly young woman who has the reputation of being the best case manager in the area. Knowing that Zika is even more organized than I am, I completely trust her to make sure all his services and supports are arranged properly. When she was recently promoted, she gave several of her clients to other case managers, but kept us, and we are thankful she did.

The Kindness of Strangers––As we have been taking Alex out in the community more, we have the opportunity to see kindness in people who recognize his disability but see past it to his pure heart. We appreciate those who make an effort to engage him in conversation, albeit limited, making him feel special. A couple of weeks ago, a kind man bought our dinner at a restaurant, telling us that he saw us taking care of Alex and wanted to take care of us. Our experiences with Alex have shown us unexpected goodness in people.

The Internet––When autism has isolated us, the Internet has allowed us to interact with others who shared our experience and kept us from feeling alone. Moreover, the ability to do autism research so easily has been a tremendous blessing over the years.

Mother’s Intuition––Raising a child with autism brings responsibilities over and above those of typical parenting. In making decisions, Ed and I discuss the options and pray for guidance. However, my mother’s intuition often guides me to the right places, and I know that God is really the force behind those instincts.

Because Alex has made good progress in various areas, I am thankful for the things he has learned and the things he is doing that show that progress, such as:

Independently Toileting––Every time Alex flushes the toilet, I say a prayer of thanks that he can use the toilet on his own. After years of accidents, cleaning carpets, doing multiple laundry loads of his clothing and sheets, and trying every potty training technique known to man, I am so grateful that he finally learned to use the toilet. This accomplishment, more than most, reminds me that some things take a long time to learn and that I should never give up hoping that he will eventually be independent.

Hanging Up His Jacket––One of the things Alex learned in his previous day program was how to hang up his jacket. Even though it may take several tries, he keeps trying, a testimony to his persistence, which has helped him make progress along the way.

Putting Away His Dishes––Alex has begun cleaning up after himself without being told. When he brings his dirty dishes to the kitchen sink without a reminder, we are reminded that he is showing responsibility, which is encouraging and gratifying that he is learning.

Finding Lost Items––Instead of having a meltdown because he can’t find his stuff, Alex now calmly looks for his missing belongings on his own without demanding we find them for him. Moreover, he even looks in reasonable places, and he finds his efforts rewarded by being able to find what he has misplaced.

Patience––Alex has learned to wait patiently, which is a testimony to his progress, because waiting used to bring anxiety. Armed with a watch and a schedule, he knows that good things come to those who wait, and he is willing to wait patiently instead of driving us crazy with repeated questions regarding when things will happen.

Responsibility––After years of carelessly leaving his belongings around the house, often on the floor, Alex finally learned to take care of his things. We are amazed by how carefully he handles his iPad and his eyeglasses, treating them responsibly because he knows they are fragile. In addition, he has learned not to touch breakable items in our house, which means that we have been able to return our glass and porcelain knick knacks throughout our home after they spent years of hiding packed away in the safety of the basement. Their presence reveals our trust in Alex and his respect of property.

Attention Span––Alex can now watch an entire movie or a sports event on television and follow what is happening because his attention span has gotten much better. Not only does he watch these with interest, but he also asks good questions about what is happening so that he can learn more.

Companionship––Along with watching television, sports, and movies with us, we enjoy a companionship with him in other daily activities. He has become my sous chef who keeps me company and helps me when I’m making dinner. Instead of demanding when dinner will be and whining that it’s taking too long, he enjoys taking part in the process and knows that the effort will be worthwhile.

Appetite––Even though Alex can’t eat grains with glutens or milk products, he has a healthy appetite and a willingness to eat a variety of foods, especially healthy ones. In fact, Alex is probably happiest when he is eating a meal, and he takes his time to savor every bite.

Going Places––Because Alex’s behavior has improved significantly, we have been able to take him many different places, which he enjoys thoroughly, whether it’s going to sporting events, concerts, stores, or restaurants, which combine his love of food and going places. Not only does he have a good time, but we also have fun watching him enjoy himself during our family outings.

OCD Under Control––Thanks to medication, Alex’s OCD has been under much better control. His recent obsessions seem to have faded, thank God. We no longer have to wander the aisles of Pet Supplies Plus every Sunday evening, we no longer have to keep a surplus of Welch’s sparkling grape juice in the refrigerator so that we never run out of it, and we don’t have to answer questions every hour about when bath time is. This is good, and we are thankful.

Breakfast––For some unknown reason, Alex stopped eating breakfast a few months ago. However, his morning attitude became grouchy and demanding. After putting two and two together, my mother’s instinct kicked in and thought there may be a connection between the two. Thinking that low blood sugar from not eating may contribute to Alex’s crabby morning disposition, we decided to encourage him to eat breakfast, and the results have been rewarding. Feeding Alex breakfast has made him much more pleasant, not just in the morning, but also for the entire day.

Good Health––For the most part, Alex is quite healthy and rarely gets sick. His good appetite, willingness to take vitamins, and following my directions to keep him healthy all contribute to his good health, but God’s protection provides what Alex needs. This weekend, Alex has a cold, and he has shown what he has learned by asking for vitamin D and pain reliever and by resting and eating healthy foods. Apparently reading all those medical books has paid off for him!

Yeast Be Gone––After dealing with yeast overgrowth in Alex’s digestive tract for more than four years, we currently have it under control using a nutritional supplement, SF 722, that acts as a natural antifungal. Because the yeast is irritating, causing sores in Alex’s mouth and throat, dandruff, and acne, he responds to these flares with bad behavior. After trying a variety of antifungal medications and supplements that temporarily relieved the symptoms, we have prayed for a cure and think we may have one. We are tremendously thankful for this healing.

Taking an Interest in Others––Perhaps because he is less anxious and feeling better physically, Alex has begun to take a greater interest in other people. He wants to know more about their lives and interests, and he asks good questions (instead of his former nosy ones wanting to know statistics such as age, weight, and how much money they have) that reveal his desire to learn about them. This truly shows progress on his part.

Prayers––My favorite time of the day is saying bedtime prayers with Alex. His insistence on praying for everyone he has ever known and even throwing in some people he doesn’t (such as former baseball player Sammy Sosa) makes me smile, and holding his hand as we talk to God together is a precious time I treasure. He exudes a peace and joy as we pray, and I am blessed to share that with him on a nightly basis.

Faith––Although my parents raised me to have faith that I have also shared with Alex, dealing with the struggles that autism has brought our family has strengthened my faith beyond what I could ever imagine. Moreover, Alex has reminded me to have a deeper faith––that complete child-like faith that he shows––knowing that no matter what, God is always with us, guiding us, loving us, and blessing us. Happy Thanksgiving!

“Give thanks to the Lord, for He is good! His faithful love endures forever.” Psalms 118:1

Sunday, November 15, 2015

One in 45

The latest U.S. autism statistics were announced two days ago, and the news is not good. According to the report from the Centers for Disease Control and Prevention and National Center for Health Statistics, the prevalence of children between the ages of 3-17 who have autism is now 1 in 45. More alarming is the rate of increase. Between 2011 and 2013, the rate was one in 80, or 1.25 percent of children. With the current statistics showing that 2.24 percent of children have autism, this shows an 80 percent increase in just a few short years.

Of course, the researchers want to make all kinds of excuses about why the rate of autism is dramatically rising instead of simply acknowledging what parents and teachers already know—we have a lot more kids with autism than we did in the past. One of the reasons given for the increase was a change in the questionnaire format. Specifically, the lead researcher notes that autism is now listed first on the questionnaire ahead of developmental disabilities, and he believes that more parents chose autism because it was listed first. Certainly, a real increase in autism rates couldn’t possibly be the reason; furthermore, one could not expect autism parents to fill out forms correctly [sarcasm intended].

Moreover the usual suspects have been cited as possible reasons for the increase in autism found in this research study: over diagnosis of autism and the ever-vague and rarely specifically named possible environmental factors. Naturally, all parents want their children to have autism, especially if it’s going to be such a popular diagnosis. All the cool kids will have an autism label, and apparently more and more will be getting one. Some mothers aspire to be soccer moms and take their kids to games and practices; others prefer to take their kids to speech therapy and ABA therapy and occupational therapy, just a few of the perks of being an autism mom [again, sarcasm intended].

In an article entitled “Autism cases in U.S. jump to 1 in 45: Who gets the diagnosis, in 8 simple charts,” The Washington Post shares an excellent overview of who these children identified with autism are. [To read this article by Ariana Eunjung Cha, please click here.]

1. Approximately half of children (55.4%) are between the ages of 3 and 10; children between the ages of 11 and 17 make up 44.6% of those diagnosed with autism.

2. Traditionally, the number of boys with autism has always been greater than the number of girls with autism. This trend continues, as the current research shows that three fourths of the children with autism are boys versus one fourth of the children are girls. This shows an increase in the number of girls being diagnosed with autism, however. In the 2011-2013 study, only 18.3 percent were girls. With the help of my husband, who is much more mathematically inclined than I am, these new statistics mean that approximately one in 27 boys has autism. That means that statistically, every typical classroom will have one boy with autism. Having taught for more than thirty years, I can confirm that the number of students with autism has risen dramatically during my career in teaching. I can also confirm that most school districts are in no way ready to handle these students with very special needs.

According to the Indiana Resource Center for Autism based at Indiana University in Bloomington, Indiana, my home state, the number of students identified with autism spectrum disorders is clearly on the rise. In a recent article entitled “Increasing Incidence of Autism Spectrum Disorders Continues in Indiana" [To read this article, please click here.], the increase in actual numbers of students in Indiana public schools who have autism spectrum disorders is staggering.  According to the Indiana Department of Education, the number of students with autism enrolled in Indiana public schools is 14,179 out of 1,009,943 total students, or 1 in 77 students. Of course, some parents of children with autism choose to enroll their children in private schools or to home school them, as we did Alex, because public schools often cannot meet the unique needs students with autism have.

What is more mind-boggling is the graph this article includes, showing the increase of students who have autism in the Indiana public schools. While the number of students with autism this current school year (2014-2015) is a little over 14,000, five years ago, that number was a little under 11,000. Ten years ago, the number of students with autism in the Indiana public schools was less than half of the current rate at a little over 6,000 students. To truly boggle the mind, in the 1998-1999 school year, when Alex would have been a first grader, the number of children with autism in Indiana public schools was about 2,000. In sixteen years, the number of students who have autism in Indiana public schools has increased more than seven times.

As if those figures weren’t unsettling enough, this article also points out the monetary factors involved with autism. Quoting the CDC research, the article notes that the estimated cost of caring for a child with autism is $17,000 to over $21,000 per year more than raising a child who does not have autism. These extra expenses include costly therapies, health care, and education. If the autism rates continue to grow, how will schools afford to provide education to all these children with autism?

3. Autism affects all races, but predominantly the majority (59.9%) of children with autism are white. Hispanic children make up 16.1% of the total, Black children account for 13.5%, and other ethnicities total 10.6% of the children diagnosed with autism. These statistics mirror the overall population statistics, with approximately 17% of the U.S. population identified as Hispanic and 13.2% of the U.S. population being Black. Consequently, autism seems to affect all ethnicities fairly equally.

4. Contrary to the reports that autism breaks up marriages, most children with autism (68%) live with both parents.

5. Children with autism come from all levels of income fairly equally. In dividing the levels of family income into four groups, the highest level of income was 21.5%, the next level was 25.1%, and the lowest level was 21.4%––all statistically similar. The third group, just ahead of the lowest level of income was the highest at 32.1%. One wonders if this level is made up of parents who are struggling to pay for the $17,000-$21,000 of extra costs for therapies needed for their children with autism.

6. In comparing parents’ levels of education, approximately two thirds of the parents of children with autism have more than a high school education, and a little less than one third of the parents reported having a high school education or GED or less.  The researchers assume the reason for higher rates of children with autism in better-educated parents may be that they are more observant and more likely to get help for their children.

7. Slightly more than half (54.7%) of children with autism live in a large metropolitan area. Perhaps their parents have migrated to these areas because they can find better services often associated with large children’s hospitals found in major cities.

8. Nonetheless, children with autism can be found throughout the U.S. According to this study, 21% live in the Northeast, 21.5% live in the West, 26.2% live in the Midwest, and 31.2% live in the South. Once again, autism shows that it doesn’t discriminate; fairly equal numbers can be found throughout the country. Moreover, the impact of increasing numbers of children with autism should be a growing concern in every part of our nation.

While this newest research not only indicates an increase in numbers of children and their families impacted by autism, its statistics also show that autism can be found everywhere in the U.S. in every age of children, gender, ethnicity, family structure, income level, level of parental education, and geographical type and region. What this research does not indicate is the definite reason for this epidemic, nor does there seem to be much effort made to find a cause for autism.

To make feeble excuses about how questions are answered or possible better diagnostic methods does not address the costs—emotional and financial—of providing support for all of these children with autism in family, educational, and medical settings. To ignore this problem that is clearly growing rapidly is at best foolish and more likely disastrous. As an autism mom, I will not be silent. We must figure out what causes autism now for our children’s sakes as well as for our society that cannot provide for the needs of those currently diagnosed with autism, let alone those who will be diagnosed in the future. With God’s help, I pray that we find the answers we desperately seek.

“Get ready; be prepared! Keep all the armies around you mobilized, and take command of them. You and all your allies—a vast and awesome army––will roll down on them like a storm and cover the land like a cloud.” Ezekiel 7, 9

Sunday, November 8, 2015

Jazz and Joy

This past week, we took Alex to a jazz concert performed by the Faculty Jazz Trio at Valparaiso University. As I have mentioned in previous blog entries, Alex loves jazz music, thanks to Ed, who introduced him to various types of jazz as they listened to CD’s together over the years. I suspect that Alex’s fondness for this type of music lies primarily in his association of jazz with pleasant times spent listening to the music with his dad. Additionally, I think he probably likes the instrumental music because he doesn’t have lyrics to distract him from the music itself. However, I also know that Alex has a special affection for any words that have two z’s in them: blizzard, drizzle, Rizzo (his favorite baseball player), pizza, and jazz.

Like Alex, I have developed an appreciation for jazz because of Ed’s interest in it. Once Alex became hooked on the music, I also learned to enjoy it even more because it was something we all could share as a family by going to concerts together. Similarly, I discovered an interest in NASCAR after seeing Ed and Alex thoroughly engaged in watching stock car races on television every weekend. Trying to figure out what they found so appealing, I, too, was drawn in to watching auto racing, which is now my favorite sport, as well as another common interest we share as a family.

One of the nice things about living in a college town is the opportunity to take Alex to various events that he finds entertaining, such as concerts. To be honest, any time we take him to events at the university, whether they be concerts, astronomy lectures, or sporting events, I feel a little wistful. As I see the college students who are about Alex’s age, I feel somewhat sad to recognize that they are living the life that Alex could be enjoying, had autism not affected his brain and made speech, fine motor, and social skills so difficult for him. Of course, he is oblivious to this realization, which is a blessing. He doesn’t know what he’s missing.

During the concert, Alex swayed to the music, watched the musicians intently, and smiled frequently as he showed delight at being able to be part of a live music event. As Ed commented afterward, the best part of the concert was watching Alex enjoy himself so much. Moreover, we were pleased to see that he has learned appropriate social behavior, sitting quietly, paying attention, and even knowing when to applaud. With jazz concerts, this takes some learning because applause is not limited to the ends of songs; Alex now knows that clapping is appropriate at the ends of solo performances within the songs. At one point between songs, he leaned over and quietly asked Ed why no one had played the saxophone that was placed on the stage, showing that he was very alert to what was happening. Ed explained that a guest musician was going to play the saxophone, and when the saxophone player joined the trio, Alex gave a knowing smile.

When I wasn’t watching the musicians who clearly loved playing music or Alex who clearly loved hearing music, I glanced around the audience to see others’ reactions. What I noticed was that none of the college students were nearly as engaged in the concert as Alex was. Looking bored or engrossed in whatever was on their phone screens, they were missing the enjoyment of the moment, the joy that Alex found in the music. Perhaps they were worried about studying they needed to do after the concert or concerned about keeping up their friendships through texting and social media—none of which bothers Alex because he doesn’t live the life of a college student.

While Alex may miss out on the typical things that college students enjoy, he also is spared from the worries many college students suffer. He just enjoys life to the fullest, delighted to go places, and he expresses his joy freely, not caring what anyone thinks of him. What makes Alex’s contentment even more special is remembering the dark times when anxiety held him captive and made him unable to experience joy. Although those times of sorrow seem wasted, we realize that we appreciate Alex’s happiness even more because it was restored to him and to us after many trials and heartaches.

As described in Chapter 61 of Isaiah, we are now living “The Year of the Lord’s Favor”: “And so you will inherit a double portion in your land, and everlasting joy will be yours…All who see them will acknowledge that they are a people the Lord has blessed.” While we have gone through ordeals with autism, Alex has overcome many obstacles, and he faces life with appreciation for what he has instead of bitterness for what he has lost. Moreover, we have learned to face the future with faith and hope instead of fear. Truly, as the Psalmist proclaims, we “sing a new song to the Lord, for he has done marvelous things”!

“Those the Lord has rescued will return. They will enter Zion with singing; everlasting joy will crown their heads. Gladness and joy will overtake them, and sorrow and sighing will flee away.” Isaiah 51:11

Sunday, November 1, 2015


“Mrs. Byrne, what’s your son going as for trick or treating?” asked one of my seventh grade students on Friday. Now that the first quarter of the school year is over, my students know that they can ask me questions about my personal life, and I know that they are curious about my life outside of school.

“He’s not going trick or treating. He’s an adult,” I reminded them. Some of them looked at me curiously; others remembered that I had told them that he’s twenty-three years old.

“But I thought the reason you only teach in the mornings is because you have to go home and take care of your son,” another commented.

“Yes,” I began cautiously, knowing that one of the students in the class also has autism. “Remember, I told you that he has autism and needs my help because he can’t do some things by himself.” Some of them showed signs that they recalled what I had already told them about Alex and nodded knowingly; some of them looked at me sympathetically.

Trying to come up with a simple way to summarize what our life is like, I told them, “He’s kind of like a giant five-year-old.” That seemed to satisfy their need to know, and the bell rang to end the class. In many ways as their teacher I play the same role that I play as the mother of an adult son with autism––caregiver. I loan them pencils they have forgotten to bring, give them bandages for wounds real and imagined, listen to them tell their worries and accomplishments, and most of all, make them feel safe and nurtured.

While I think being able to take care of others is one of my strengths, I also need to remember to take care of myself. This week, I read an article online entitled “10 Signs of Caregiver Stress” and felt fortunate that now I rarely suffer from any of the symptoms: depression, withdrawal, anxiety, anger, loss of concentration, changes in eating habits, insomnia, exhaustion, drinking or smoking, and health problems. [To read this article, please click here.] Because Alex has improved over time, he requires less care from us, and we have learned to cope with the everyday stresses of taking care of a child, and now an adult, with autism.

This article also provides helpful tips in coping with the stressors associated with caregiving, offering fourteen strategies for controlling stress. This list of suggestions includes seeking help in the form of respite and health care resources, asking for financial help, joining support groups, and finding caregiver resources. In addition, the list recommends that caregivers take care of their own health through exercising and regular checkups. The majority of the list, however, focuses upon dealing with mental stressors and offers excellent suggestions for coping. To keep from becoming overwhelmed by the demands of caretaking, the need to prioritize, make lists, and establish daily routines––all of which I find extremely valuable––is emphasized. Other recommendations include keeping in touch with friends and family while also making time for oneself and recognizing the need to say no to some requests. Moreover, taking time off from a job may be required to give the time needed to balance caregiving and taking care of oneself.

Probably the most useful suggestions from this article included those regarding how to shape thinking as ways to cope with stress. Strategies recommended include the following: setting realistic goals, identifying what can and cannot be changed, forgiving oneself for imperfections, and thinking positively while keeping a sense of humor. I know that all of these strategies have helped me cope with the stresses autism has brought into our family life. I also know that when I forget these suggestions, I feel overwhelmed, trying to do the impossible, being too hard on myself, and taking things entirely too seriously. Additionally, I would add prayer as the most vital coping technique, for praying always puts life into perspective for me and eases my worries, bringing a sense of calm and peace.

Truly, caring for a loved one with a disability demands mental and physical energy and can overwhelm the caregiver. However, I sometimes find lately that Alex and I switch roles, as he is also learning to care for me. Yesterday, I found myself frustrated by a seemingly ordinary circumstance, and Alex was able to put the incident into perspective for me, instead of my doing that for him. We were supposed to have a new clothes dryer delivered between 12:30 and 2:30 in the afternoon, but as the day wore on, clearly the delivery was not going to happen within the time frame we had been given. Although we were hoping for an early delivery so that we could go to a basketball game as a family, that was not to be. Even though I’m sure that Alex was disappointed about not going to the game, he never complained or got upset about the change in plans.

When the delivery truck finally arrived around 4:30, Alex was a little nervous about how the late installation of the dryer would impact his precious dinnertime, telling me he was “very hungry.” I handed him a couple of gluten-free/dairy-free cookies to tide him over until we could have dinner, and he was satisfied. Because we had to be home to give out candy to trick-or-treaters starting at 5:30, our original plans to go out to dinner at a restaurant were also cancelled. Again, Alex was disappointed, but he remained pleasant and never complained about the changes caused by the delayed dryer delivery.

After being annoyed most of the afternoon waiting for the delivery guys, their arrival further irritated me because they did not properly install the dryer and told us we would have to wait for someone from the service department to fix the problems. I think they were in a big hurry because they were running late, so they didn’t bother to put the leveling feet on the bottom of the dryer, which means the door won’t stay open for loading clothes, and they didn’t hook up the vent in the right place, so we can’t shut the door to the laundry closet because the dryer is sticking out too far. As my mother would say, “It was a real disappointment.”

On the positive side, the dryer does work, so I tried drying a load of clothes yesterday evening. Alex with his exceptional hearing noticed the quiet hum of the dryer and asked me what that sound was. I explained that it was our new dryer, and he smiled, commenting that it had a deeper sound than the old one. Of course, the reason why we got rid of the old one was that it sounded like it was grinding gravel, so this truly was a big improvement. As I watched Alex amused by the gentle sound of the new dryer whose delivery had caused so much annoyance that day, I realized that he had the attitude I needed. Instead of being upset that the delivery had not gone as I’d planned, I was fortunate to be able to have a nice new clothes dryer, one that had a pleasing sound. All of the other details will be resolved, and there was nothing more we could do to fix them until next week. Despite all the irritations and changes in plans, Alex had remained calm and seen the bright side of the situation, and he showed me that I needed to do the same. I’d like to think that he learned that from me. Maybe I was wrong in the way I explained Alex to my students; maybe it’s not just that I take care of him but that he also takes care of me. More importantly, Alex and I know that God takes care of us as the ultimate caregiver, helping us cope with all issues big and small.

“Give your burdens to the Lord, and He will take care of you. He will not permit the godly to slip and fall.” Psalm 55:22

Sunday, October 25, 2015

The New Kid on Sesame Street

A few days ago, a new character joined the Sesame Street neighborhood, and she has already become controversial as a topic of discussion in the media. Julia has orange hair and green eyes. She has trouble making eye contact, sometimes takes a long time to answer questions, and flaps her arms when she is excited.  In addition, she is also described as curious and very smart. Julia has autism.

Introduced by the Sesame Workshop a few days ago, the new character is “part of an initiative designed to reduce the stigma surrounding autism.” [To read the news report from PBS, please click here.] This initiative, entitled “Sesame Street and Autism: See Amazing in All Children” provides online and printed story books, a free downloadable app, and resources for parents and teachers, including routine cards on how to handle everyday activities with children who have autism. Although Julia will share storylines with Sesame Street characters Elmo and Abby in the books and resources, she will not yet be a part of the long-running children’s television show.

Immediately critics noted that while autism is much more prevalent in boys than girls, the creators of this initiative chose to make this first character with autism a girl. In addition, the debate regarding how to refer to this character also appeared this week. Is she an autistic character or a character with autism? Some adults on the autism spectrum prefer that she be called an autistic girl, asserting that autism is part of the personality. Other people prefer the “person-first” language in which the disability comes last in describing the character: a girl with autism.

Yet another area of debate arose as Sesame Street chose not to address the controversy regarding the cause of autism. While some factions insist that autism is a genetic, congenital disorder, others believe that environmental factors, such as toxins from the environment and/or vaccines, trigger neurological damage that leads to the diagnosis of autism. Apparently, some critics accuse Sesame Street of siding with the pharmaceutical companies who manufacture vaccines because of their decision to avoid discussing any potential causes of autism in Julia.

Julia, however, is not the first character with a disability on Sesame Street. As early as the 1970’s, characters such as deaf actress Linda Bove, paraplegic Tarah Schaeffer, and blind Muppet Aristotle were introduced to teach children about people with disabilities. To introduce a character with autism at this time shows how prevalent a formerly rare disorder has become. While the intention to educate typical children about peers who have autism seems to have a noble motive, I hope that Julia is not simply a one-dimensional token character, the one who has autism.

Frankly, I’m a little disappointed that Sesame Street has given a girl whom they deem “amazing” a common (albeit beautiful) name. Unlike the other girls on Sesame Street, such as Zoe, Abby Cadabby, and Prairie Dawn, Julia doesn’t have a poetic name. Also, unlike her female peers who accessorize their outfits (especially Abby Caddabby who wears fairy wings), Julia dresses rather simply with no jewelry like Zoe wears. Perhaps this is to show her sensory issues; she must wear comfortable clothes that don’t bother her and no accessories that might distract her.

Apparently, Julia’s most understanding peer is Elmo, the cute and furry little red monster, who explains her autistic idiosyncrasies to other characters who misinterpret her impaired language and social skills and think she doesn’t like them. Elmo explains, “…Julia has autism. So she does things a little differently.” As if Elmo weren’t lovable enough, his concern for Julia makes him even more endearing. Perhaps Elmo is not just a sympathetic character, but actually an empathetic one. Maybe Julia isn’t the first Muppet with autism, after all. In fact, I think that Elmo was the first character with autism on Sesame Street because he displays the following traits common in autism:

Pronoun Reversal––To prevent confusing the first and second person pronouns I and you,  Elmo refers to himself in the third person, using he, him, and his, and more commonly just calling himself "Elmo," as in “’Elmo doesn’t think that’s true,’ Elmo says.”

Difficulty in Controlling Vocal Volume––Elmo has a great deal of trouble modulating his voice, talking entirely too loudly most of the time.

Poor Eye Contact and Hand Flapping––Although Elmo’s googly eyes make it difficult to discern his ability to make eye contact, he certainly exhibits the stereotypical arm flapping motions when he is excited.

Sensory Issues––Yet another indicator that Elmo has autism lies in his obvious need for sensory stimulation. The popular Tickle Me Elmo clearly craves tactile stimulation.
Obsessions and Compulsions-––In a You Tube clip, Elmo show classic autism behaviors by becoming obsessed with the "CLOSED" sign, repeating the word over and over and then showing the insistence upon following rules often seen in autism.

Putting aside the controversial aspects regarding Julia and my tongue-in-cheek assessment of Elmo, one of those who developed the character of Julia has a powerful motivation. Autism mom Leslie Kimmelman, who wrote the online storybook We Are Amazing that introduces Julia, explains when her son was diagnosed with autism more than twenty years ago, not much was known about autism. She comments that autism is “still a puzzle, and every child is affected differently.” Moreover, she explains, “So what’s the most important thing for people to know? We’re all different in some way or another––that’s what makes the world an interesting place.”

While eliminating stigmas, making people aware of autism, and helping them to understand why our children behave differently is important, we cannot lose sight of the ultimate goal: helping our children reach their full potential and searching for a cure for this disorder that attacks their nervous systems. It’s all well and good to call these children amazing, but I look forward to the day when Elmo doesn’t have to speak for Julia, and I don’t have to speak for Alex. Think what these curious and very smart children will be able to tell when they overcome the obstacles autism has presented in their lives—now that will truly be amazing!

“Everyone was gripped with great wonder and awe, and they praised God, exclaiming, “We have seen amazing things today!” Luke 5:26

Sunday, October 18, 2015


Yesterday, Alex got one of those letters. Usually, I throw them away and don’t even bother to open them.  When they come from credit card companies who eagerly but unwittingly offer him a credit line, I shred them. Some of them claim to know that he surely has debt after college and probably needs to buy a car. I suppose that must be true for most young men his age. However, autism derailed his plans for college, and I, as his mother and personal assistant, handle all his correspondence. What should be a rite of passage for a twenty-three-year-old becomes a reminder that Alex’s life is not typical.

“Dear Alex, So how long has it been? Six months? A year? Three years?”

Actually, it’s been nearly twenty years since he received a diagnosis of autism, but I don’t think that’s what you’re asking him.

“When it comes to taking care of your home, you have enough to worry about. Mortgage payments, repairs, upgrades, cleaning the gutters––your home insurance is just as important to maintain. Over time, changes like additions, renovations, or even major purchases can impact your insurance needs. Alex, let’s review your policy together to make sure your coverage doesn’t have gaps.”

Don’t worry about Alex because he doesn’t worry about any of those things. Oh, and he doesn’t need homeowner’s insurance because he lives with his parents.

“It may take a disaster to show many homeowners just how big the gaps in their coverage are, and by then it’s too late. A fire, a violent storm, a thief in the night––major losses can mean thousands in out-of-pocket costs you didn’t plan on.”

Now you’re talking! We never planned on autism, and we’ve spent thousands of dollars in out-of-pocket costs. However, insurance refused to pay for most of those.
“Alex, call me or email me today so together, I can take a closer look at your policy­­––your coverage, limits, and deductibles––to help you choose the coverage you want to prepare for what might lie ahead. So call me today and let’s get started!”

That may be a problem. Alex isn’t allowed to use the phone because he thought it was entertaining to call 911 when he was younger to see what would happen. Also, we took away his email privileges as a nine-year-old when he started contacting automobile dealers about cars he liked through their online ads. As I explained to one car salesman who called asking for him, Alex was too young to drive. Of course, now he’s old enough, but he still can’t drive. Also, I’m wondering as his mother, how did you get his name and address in the first place?

Although these sales pitch letters from credit card companies and insurance companies remind me what Alex should be doing at his age and make me feel a bit wistful that he is not living the life he could be living because of autism, they also remind me that his life is blessedly simple. He is like the birds and the lilies of the field Jesus describes in the Gospels, never worrying about the things in everyday life that create stress for most people: paying off college loans, paying for cars and houses or making sure they are protected by insurance from disasters small and large that might threaten these possessions.

As Alex’s personal assistant who makes all of his phone calls and handles all of his correspondence, I am tempted to respond to the nice insurance agent who seems genuine in wanting to help ease his mind about the worries of the adult world he has recently entered.

Dear Angela, I’m not certain how you obtained Alex’s name and address, but I feel you should know that he is an adult with autism who does not have a car or a house to insure because he lacks the communication and social skills needed to hold a job. In fact, his language limitations prevent him from speaking with you directly, as he relies upon his dad and I to speak for him. Unfortunately, your company cannot provide the real coverage we need “to prepare for what might lie ahead.”

Thankfully, Alex has taught us that the only insurance we truly need in life is our faith. No matter what “disaster” comes in life––“a fire, a violent storm, a thief in the night” or even autism––God will always take care of us and provide us with what we need. Moreover, God offers “24/7 Protection” and “Personalized attention” as you claim to do, and He offers even greater savings than you tout.

While we appreciate your offer to help Alex, his dad and I can handle the everyday tasks like paying the bills and cleaning the gutters. The rest we entrust to God, whom Alex trusts wholeheartedly to see him through life and to ease any worries that might arise. Right now his biggest concern is whether the Chicago Cubs can beat the New York Mets so that they can finally go to the World Series. I doubt you can help him with that, so feel free to remove him from your mailing list. Sincerely, Alex’s mom

“That is why I tell you not to worry about everyday life––whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to Him than they are? Can all your worries add a single moment to your life?

…Look at the lilies of the field and how they grow. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, He will certainly care for you. Why do you have so little faith?

These things dominate the thoughts of the unbelievers, but your Heavenly Father already knows your needs. Seek the Kingdom of God above all else, and live righteously, and He will give you everything you need.” Matthew 6:25-28, 30, 32-33

Sunday, October 11, 2015


A few weeks ago, Alex’s case manager told us that the State of Indiana was conducting surveys regarding the satisfaction of people who receive disability services. She explained that the survey was meant to be used in a variety of living situations—from group homes to supported living in apartments to living in the family home—which meant that some of the questions may not quite fit Alex’s situation. As his case manager, she informally interviewed him in person, and I was able to sit in on this session. We never know exactly what Alex is thinking because he doesn’t say a lot, but when he does offer his opinion, it’s usually interesting to hear his comments.

The first part of the survey dealt with his room and his privacy. For example, he was asked if he shared his room with anyone (which he doesn’t) and if his door were closed, whether people would knock before entering. Apparently, Alex recognizes that we respect his privacy by always knocking before entering his room because he answered that question with a strong affirmative. He was also asked about how much say he had in decorating his room, such as paint color, furniture arrangement, and bedding choices. He must think that he has more input than he actually does because he told her that he was able to make all of those choices for himself. While he has chosen the bedding (currently Chicago Cubs baseball sheets and comforter) and had input on the themes (baseball and NASCAR), I picked the paint color (basic antique white) and the arrangement of the furniture. Since his dad gets little say in those decisions, either, I have no problems with being assertive when it comes to home d├ęcor.

Another part of the survey addressed his access to technology and whether he needed permission to use the telephone, television, stereo, and computer. Because Alex shows good judgment in his use of devices for entertainment, we allow him to use them on his own. This is a far cry from the days when we hid the remote controls because he found it more entertaining to hurl them across the room than to use them for their intended purpose. One exception to this free access to technology is the phone, which we do not allow him to use on his own. After a few times of dialing 911 to see what would happen, Alex was banned from the phones so that he would not place false alarm calls. Even though he has not done this for many years, we still have memories of police showing up on our doorstep from his 911 experiment, and we keep the phones hidden or locked away to prevent him from trying  “the boy who cried wolf” scenario again.

A third aspect of the survey related to how many opportunities he has to go out in the community. Because Alex’s behavior has improved significantly, especially out in public, he gets to go someplace nearly every day. He was able to say that he goes to various sporting events, concerts, restaurants, parks, and stores. In fact, he was pretty enthusiastic talking about restaurants he’s frequented because he really likes dining out, which combines his love of food with his love of going places. Some more specific questions asked about the places where he shops and what kinds of things he buys for himself. The prior week, he had been several places to buy himself items, so he was able to explain with a little prompting from me that he’d bought books at Barnes and Noble, various foods at the grocery store, shirts at Kohl’s, and shaving cream at K-Mart.

Additionally, the survey asked about people with whom he interacts regularly, specifically those whom he’d seen in the past month. In addition to naming Ed and me, he included my parents, my siblings and their families (and named all of them individually), and his therapists. When he named these people who are important to him, he grinned broadly, as though thinking of them made him especially happy.

As he answered the various questions, Alex clearly showed an enthusiasm about his life. Even though autism makes his life more difficult than it should be and prevents him from participating in many activities young people his age enjoy, he is satisfied and doesn’t complain about what he’s missing. (Truthfully, he’ll occasionally whine to me that he can’t drive, but that’s really the only complaint he ever lodges.) Like the Apostle Paul, who states in Philippians 4:11, “…for I have learned to be content whatever the circumstances,” Alex has learned to be content despite the limitations autism places on his life. Instead of focusing on what he does not have or cannot do, he appreciates what he has and what he can do, and his positive outlook inspires me. Moreover, as his mom, all I want is for him to be happy, and knowing that Alex is content fills me with joy and gratitude.

“So I decided there is nothing better than to enjoy food and drink and to find satisfaction in work. Then I realized that these pleasures are from the hand of God.” Ecclesiastes 2:24

Sunday, October 4, 2015

Yes, I Am an Autism Mom

Of my various roles in life, none is more important to me than being an autism mom.  More specifically, being Alex’s mom takes precedence over everything in my life. After more than twenty years of being an autism mom, imagine my surprise to discover this week that the term “autism mom” apparently offends some people.

In her Huffington Post essay published this week, “Why I Call Myself an ‘Autism Mom,’” Shawna Wingert  explains that she, too, recently discovered that the term “autism mom” strongly offends some people. Although I wasn’t sure whom she was referencing, once I read scathing comments in response to her essay, I found the critics—adults who say they have autism and some who simply criticize everything parents with autism do and say.

Truly, I admire that Shawna Wingert earnestly tries to understand the point of view of those who criticize her for calling herself an autism mom, and she beautifully defends using that title. She explains, “I never want anyone to assume that I somehow think my son’s autism is about me.” Perhaps because I’ve been an autism mom longer than she has, I don’t feel the need to be as cordial to those who want to criticize autism moms. In fact, I want to defend her and all the other autism moms from those who would dare question our intentions and motives.

As she also notes, the phrase “soccer mom” commonly exists in our society, and no one seems upset by that terminology. Moreover, university bookstores stock t-shirts and sweatshirts to sell to students’ parents emblazoned with the name of their college followed by “Mom” or “Dad.” For most parents, our lives become entwined with our children’s, as do our identities. Hence, we become soccer moms, dance moms, Valpo moms, etc. We are proud of our children and involved in their lives and activities, and we enthusiastically take on the titles that describe our children. Autism moms are no different. Instead of taking our kids to practices and games, we take them to speech, occupational, and behavioral therapies.

Like Shawna Wingert and many others, I am an autism mom and will continue to use that title unabashedly. However, autism is not who I am, nor is it who Alex is. Autism is simply what occupies our time, just as soccer does for soccer families.

However, those who bash the term “autism mom” (and made their presence known through harsh comments responding to her essay) accuse us to trying to claim autism as our own, something we “have” that really “belongs” to our kids. As Shawna Wingert asserts, “Autism is his, and his alone. I do, however, think that parenting a child with autism is mine.” Indeed, parenting a child with autism is something we own, something that binds autism parents to understand each other, allowing us to empathize because we share situations typical parents do not.

Furthermore, some of the nasty responses to this essay suggest that autism moms are self-centered and like those with Munchausen Syndrome By Proxy, as though we enjoy having children with a disability because we seek attention ourselves. Believe me, if I could erase autism from our life, I would do it in a heartbeat. Honestly, I hate how hard autism has made life for Alex, and we have focused our efforts on making his life better and easier in spite of the havoc autism has wreaked on his body and mind. By sharing our experiences in my blog, I sincerely want other autism parents to know that they are not alone, and I also want to increase autism awareness for those who don’t know firsthand what autism parents are dealing with on a daily basis. Furthermore, I always strive to show God’s grace in our lives; my intention is to glorify God, not myself.

As an autism mom, I am grateful God has given me the organization needed to keep track of the three dozen pills we administer to Alex every day and all his various appointments and paperwork. As an autism mom, I’m appreciative that I have the energy needed to help Alex with his daily living skills and that I am healthy and strong so that I can take care of him. As an autism mom, I am thankful for the wonderful team of specialists who help Ed and me develop Alex’s skills and make him the best he can be. As an autism mom, I am fortunate to have family and friends who have prayed for us, supporting us in the difficult times and celebrating with us in the good times. As an autism mom, I am blessed that God has always taken care of us, showing us the paths we should take and keeping Alex safe from danger. As an autism mom, I continue to pray for healing so that Alex and others like him no longer have to struggle with autism, and so that we no longer need the term “autism mom” because we will simply be grateful moms instead.

“I will comfort you there in Jerusalem as a mother comforts her child.” Isaiah 66:13

Sunday, September 27, 2015

The California Autism Lawsuit: Love Your Neighbor?

This past week, the media has reported the case of two families in Sunnyvale, California, who filed a lawsuit against the parents of a boy with autism. Filed in June 2014, this lawsuit is now being heard in court. [To read a news report of this case, please click here.] The plaintiffs allege that the parents, who were their neighbors, did not do enough to control their now eleven-year-old son with autism and that this boy terrorized their neighborhood. Moreover, they claim that his aggressive presence in the neighborhood could reduce their property values. Even though this family moved out of the neighborhood a year ago and say they have no plans to return, neighbors fear they may return to their former home that they have not yet sold.

Since there are at least two sides to every story, the judge must determine what was happening in that California neighborhood. Are the neighbors filing the lawsuit intolerant of autism, or are they simply protecting their children from an aggressive child? Are the parents of the child with autism doing the best they can in a difficult situation, or are they negligent, failing to control their son from harming others? The courts will decide.

According to the neighbors, the boy with autism repeatedly kicked, hit, slapped, and bit people, especially younger children. As one plaintiff notes: “For us this case is not really about autism. It’s about the safety of our children. They were attacked on multiple occasions.”

Moreover, they claim that the boy’s parents and babysitters did not properly supervise him, which led to his being a threat to other children in the neighborhood. “This has to do with the parents’ responsibility to control their child,” said one of the neighbors.

Of course, parents of children with autism fear that this lawsuit could encourage intolerance toward their children and potentially generate similar lawsuits. This week, the Huffington Post published an online response to the California lawsuit by autism mom and activist Bonnie Zampino entitled “My Son Has the Kind of Autism No One Talks About.” [To read this essay, please click here.] In her heartfelt essay, she discusses the lack of true autism awareness, which she attributes to media feel-good stories about autism emphasizing rare achievements and ignoring problems associated with aggression in autism.

Drawing from her own experience with her son who has struggled with autism and aggression, Ms. Zampino explains the isolation that comes with a child whose behavior is not socially acceptable. She notes, “Because I didn’t know what my son was going to do to other children, we stopped going to the park.” She adds that they also stopped going to the library, birthday parties, and play dates.  As a result, she states, “Because of my need to isolate my son, I also isolated myself, too.”

Moreover, she challenges the comments by the plaintiffs in the California lawsuit who claim that their case is not about autism. She points out that a lack of autism awareness has caused these neighbors to fail to understand the issues the family whose son has autism are facing. She notes, “Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.” However, she also believes that once people truly become aware of autism, even the often hidden negative aspects, “We will become a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them.”

Having dealt with Alex’s aggressive behaviors linked to autism, I know how terrifying and upsetting this behavior truly is. While I can empathize with those autism parents who are isolated from the rest of society because their children’s behavior poses a threat to others, I think this is necessary until their children’s behavior can be managed. Until our children learn to interact appropriately, we must protect others from their aggression. Moreover, we need to respect that other parents have the right and responsibility to protect their own children, just as we want our children to be protected from those who might harm them.

For long periods of time, we had to isolate Alex from the world because we could not trust him to behave appropriately. Ed or I would run errands such as grocery shopping alone while the other stayed home and supervised Alex. We could not do typical family outings because we were not a typical family; we had a child with autism who was overwhelmed in social situations and overreacted to sensory stimuli. We could not attend family gatherings because we never knew when he might suddenly take off his clothes, say inappropriate remarks, or physically attack someone out of the blue. To protect his younger cousins, we just stayed home. Although our self-imposed isolation was sad, it was necessary until Alex could behave himself in public.

Certainly, we need more autism awareness in our society, but the kind of publicity the California lawsuit brings encourages even more negative attitudes toward autism. Autism parents must teach our children to behave appropriately, even when it is difficult for them and for us. We must teach our children socially appropriate behaviors if we want them to live and interact in society. Pity parties and whining about how hard our lives are does no good for our cause. Although we may say that our children use behavior to communicate, another parent doesn’t care when our kids are inflicting bodily damage upon theirs. If we can’t make our children behave, then we need to protect them and others by isolating them.

Here’s the reality: children with autism grow into adults with autism. We must address aggressive behaviors, whether it be with therapy and/or medication, when the child is more physically manageable. As upsetting as aggressive behavior is in children with autism, adults who exhibit these behaviors pose true safety risks to others and themselves. We have explained to Alex that as a six-foot-tall young man, he cannot touch other people because he frightens them. We have also explained that someone may mistake his intended friendly gesture as a threat, and they may shove or punch him to get him out of their way, not knowing or caring that he has autism. Indeed, the media has reported cases where adults with autism have been arrested for assault, and in one terrible case, even shot to death by a man protecting his family from the aggressive behavior of a neighbor man with autism. As autism parents we must try to make our children understand the rules of society if we have any hope of their living as part of the community who doesn’t always understand them.

While the case of the Sunnyvale, California neighborhood filing a lawsuit instead of being able to cooperate and resolve their problems reasonably is disappointing, poet Robert Frost had the right idea when he wrote, “Good fences make good neighbors.” Until we help our children with autism to control their aggression, we must keep the world safe from their behavior, and we must keep our children safe from those who do not understand them. Although we would hope that our neighbors could love our children, perhaps at times this is best done from a distance with a fence––literally and figuratively––between them and us.

“And you must love the Lord your God with all your heart, all your soul, all your mind, and all your strength. The second is equally important: ‘Love your neighbor as yourself.' No other commandment is greater than these.” Mark 12:30-31

Sunday, September 20, 2015

Playing Detective

When I was a kid, I loved reading The Happy Hollisters series of books in which a family of five young siblings somehow finds themselves involved in mysteries they need to solve. Perhaps I was initially drawn to this fictional family because the oldest daughter is also named Pam, but I stuck with the series, reading every one I could find at the public library, fascinated by the ways these kids put together the clues to get to the bottom of the mysteries. Little did I know that as an adult, I would be solving mysteries of my own.

Because not enough is known about autism and because Alex’s communication skills are weak, I often find myself sifting through clues, trying to discern why he does some of the things he does. By putting together the research that I have done over the years––especially medical research––with careful observation of Alex, I can usually come up with potential reasons that have reasonable validity. Sometimes, however, I must sort through a wide variety of clues before I know the real reason.

Recently, Alex has been a little off. While his behavior has not been that bad, he just doesn’t seem quite like himself. Because we never want behaviors to escalate, we always try to get to the bottom of the problem right away. After having such a wonderful summer where he was content and cooperative, we didn’t want him to regress. Therefore, I went into detective mode and tried to figure out what was causing small changes in Alex.

Usually the culprit for behavioral challenges is yeast overgrowth in his digestive system, namely thrush, which makes his mouth and throat sore, causing him to be irritable. After dealing with yeast flares for more than three years, we recognize the symptoms and know that we must treat him immediately with antifungal medication to ease his discomfort and to prevent increasing agitation. Our experience has also taught us that yeast flares bring “abcd” symptoms: acne, behavior issues, coating of tongue, and dandruff. Fortunately, we didn’t see any of the telltale signs this time. Moreover, Alex seemed to be his usual pleasant self in the evenings, so an ongoing problem like yeast seemed unlikely. Therefore, we crossed yeast flare off our list of potential causes.

Another reason for Alex to be irritable is change. From past experience, we know that changes in routines can cause negative changes in his behavior. Although we considered that our returning to our teaching jobs after the summer off work might have bothered Alex, he seemed to be adapting to the transition reasonably well. In addition, he had maintained his afternoon schedule throughout the summer: Tuesdays with Jennifer for behavioral therapy, Wednesdays with Jessica for respite, Thursdays with Noel for music therapy, and Fridays with Jennifer for recreational therapy. Since his schedule had stayed the same, he didn’t have to adapt to any changes. In addition, we had not made any changes to his medications or supplements, so we couldn’t point to those as potential triggers for his being a little different.

After ruling out obvious causes, I then focused on potential environmental changes. While Alex doesn’t show typical seasonal allergy symptoms, such as sneezing, runny nose, or watery eyes, he has in the past acted irritable during allergy season. After checking the Weather Channel website and discovering that weed pollen has, indeed, been moderate to high in our area the past couple of weeks, I suspected that pollen could be bothering Alex. However, he usually does not want to be outside when pollen bothers him, and this week he has specifically requested to go outside in the yard, enjoying the fresh air. In fact, being outside seems to put him in a good mood, so pollen is probably not bothering him. Also, I suspected that some of the weather we’ve had lately could have affected him because he is like a human barometer who senses every change in air pressure, often acting irritable when the pressure is very high or low. Despite thunderstorms and a deluge of rain, he didn’t seem bothered by the weather.

Aside from the natural environment, Alex can also be annoyed by changes in the economy. Since he watches the business news channels faithfully, he is aware of oil and gas prices, stock market trends, and interest rates. At times, he has been very upset by high oil and gas prices and drops in the stock market. However, he has learned to take economic news in stride and not let changes upset him. In fact, he often compares various fluctuations to the stock market, knowing that things naturally go up and down, making observations, such as, “Temperatures are like the stock market; they go up and down.” Since Alex has come to realize that the economy fluctuates and watches the news without getting upset, we decided that he was not affected by the stock market, either.

After ruling out all of the usual suspects, I had to look deeper to figure out more clues and see what might be behind them. First, we noted that he typically seemed irritable in the morning and late afternoon, and he was at his best in the evenings, especially after a big dinner. During these times when he seemed off, we noted that he was anxious, impatient, fatigued, mentally foggy, and shaky. Although he has been getting a good night’s sleep every night, he still seemed tired in the morning. However, he would be energetic and active physically and mentally every evening. I wondered if he needed for his morning medications to take effect, but even when they should have been helping, he still was not quite himself. Moreover, when he was at his best every day, his medications would have been wearing off. I even considered that some of these symptoms could be side effects of some of his medications, especially the tremors that go along with lithium that he takes to regulate his moods.

Another factor I considered was the change in Alex’s waistline. Since Alex weighs himself every night before he goes to bed, I noticed that he has lost some weight. Although he looks quite healthy and has lost the belly weight caused by some of the medications he takes, something has caused him to drop those pounds. In thinking about his eating habits, I realized that once his obsessions about eating for set amounts of time or insisting upon three servings of food every meal had passed, he wasn’t eating as much as he used to eat. In addition, he didn’t seem interested in eating breakfast, nor was he snacking as much as he used to. Not wanting to force him to eat, we trusted that he knew what his body needed, but perhaps this was the culprit.

Realizing that he was at his best after eating a large dinner, I began to wonder if Alex was off whenever his blood sugar was low. After some quick research, I discovered that symptoms of low blood sugar include the following: fatigue/sleepiness, shakiness/tremor, anxiety, irritability/impatience, mental confusion, and dry lips. Alex had all of these symptoms. Consequently, I decided we needed to change his eating habits to see if eating more would alleviate the symptoms we’d been observing.

This week, Ed has been fixing Alex breakfast that includes fresh fruit every day, and we have increased the amount of food he eats for lunch, as well. In addition, we have been offering him healthy snacks, such as hummus, tomatoes, and bananas, all of which he especially likes. After just a few days of this new healthy diet, he already seems better. He has been more active mentally and physically in the mornings, and he doesn’t seem as anxious and irritable in the afternoons. Thankfully, he can afford to gain some extra weight, so we can feed him more without worrying about that consequence. Hopefully, we have figured out the problem and the solution, both of which are fairly simple. While I’m thankful that my childhood reading habits taught me the value of looking for clues and trying to solve mysteries, I’m even more grateful that God shows us the way and gives us the wisdom to help Alex be his best.

“Listen as Wisdom calls out! Hear as understanding raises her voice!” Proverbs 8:1

Sunday, September 13, 2015

Reality Check: Adults with Autism and a Lack of Independence

Last week, Ed and a colleague had a conversation about their families, and his colleague kindly showed interest in how Alex is doing. She asked where Alex is living and if he can drive. Thinking perhaps she didn’t realize Alex’s limitations, Ed reminded her, “You know he’s autistic, don’t you?” Although she did remember that Alex has autism, she didn’t know the full extent to which autism impairs his independence. Ed went on to explain that Alex is living at home with us and will likely be living with us for a long time. In addition, he does not have a driver’s license, and that’s a good thing. With his impaired motor skills and the medications he takes for anxiety, he would be a danger behind the wheel. We know this because we have seen him “drive” Dale Earnhart, Junior’s race car on the NASCAR video game at our local arcade. When he’s not running into the race track walls, he’s running into the backs and sides of other cars. He will not be driving anytime soon, not even “slow on the driveway every Saturday” like Rain Man’s Raymond Babbitt.

Here’s the reality––most adults with autism cannot live independently. Earlier this month, The Indiana Resource Center for Autism at Indiana University posted the following on Facebook: “Today, the unemployment rate for those on the autism spectrum is as high as 70 or 80 percent.” However, even they seem to need a reality check, as they added, “From the first moment of diagnosis, we need to be teaching skills that will promote a better outcome for our students/children.” I have some news for them: we have been teaching those skills for more than twenty years, and Alex is still currently unemployable, due to his impaired motor, social, and language skills, all of which we have been addressing through multiple therapies and interventions. For example, every day since he was little, we have worked on his manners by reminding him to say “Please” and “Thank you,” yet he still needs constant reminders to say these polite phrases. He’s not intentionally rude; he’s just socially impaired, despite all our best efforts to teach him manners.

Last weekend, The New York Times published an essay by Eli Gottlieb entitled “Adult, Autistic and Ignored” that addresses the problems adults with autism face. As the younger brother and guardian of his older brother with autism, he has seen firsthand what life is like for adults profoundly affected by autism. He points out that 39% of young adults with autism receive no services after high school, and about 90% of adults with autism are unemployed or underemployed. In addition, he notes that little research has been done regarding adults with autism since most autism research focuses upon children. Specifically, he quotes a professor at University of North Carolina at Chapel Hill, Dr. Joseph Piven: “There is almost no literature on older adults with autism in the field, so we virtually have no knowledge base.” If no one bothers to study adults with autism, no one knows what their needs are or how to help them.

The recognition that adults with autism need better services is not a new concept. In 2007, Autism Advocate published an article entitled “When the School Bus Stops Coming: The Employment Dilemma for Adults with Autism” by Dr. David L. Holmes. This article addresses the problems that occur once children with autism are too old to receive supports from their local school districts. This article focuses upon the lack of available services, the importance of appropriate placements, and potential employment options for adults with autism. In addition, the article emphasizes planning for the future, specifically, putting supports into place, such as Medicaid waivers. Dr. Holmes ends the article optimistically saying that progress is being made in helping young adults with autism make the transition from school to work; however, the reality is that this is not so. Most adults with autism are unemployed and living with their parents.

In the September 2013 article “Few Young Adults With Autism Living Independently,” Shaun Heasley cites research that shows that nearly 9 in 10 young adults with autism have spent time living with a parent or guardian, and most have never lived independently. Quoting researcher Kristy Anderson, “The evidence presented in this study suggests that the vast majority of this population will be residing in the parental or guardian home during the period of emerging adulthood.” I might add that these adult children will probably be living with their parents or guardians even longer as funding for supported living and availability of group homes becomes even more limited as more and more children with autism become adults and tax an already overburdened system.

Despite all of our best efforts to prepare our children for adulthood, many of our children with autism cannot live independently. Not only are they unable to find appropriate jobs, but they also need supervision and assistance with daily living skills, which means they require expensive and not always available supported living facilities, or more likely they must live with their parents or guardians. In a wonderfully candid essay, "I Never Dreamed," published this week, autism dad Jeff Davidson outlined the reality of how much is required to care for his son who has autism. Among the many daily tasks he lovingly performs for his son, he states, “I never dreamed he would always need our help with bathing, getting dressed, shaving, and all of the other basic needs.” Unlike his son, Alex is mobile and verbal, yet he also needs a great deal of help with his daily living skills, which is why he lives at home with us.

To be honest, Alex in many ways is a six-foot-tall toddler. Every day, we must help him with meal preparation, getting dressed, grooming (including washing, drying, and combing his hair, along with shaving, brushing his teeth, and keeping his fingernails and toenails clipped), and cleaning his eyeglasses and reminding him to wear them. Thankfully, he is very cooperative with us and likes to be clean and neat, so he doesn’t mind that we tell him he needs to wear deodorant, and he happily takes a bath every day. In addition, we administer his medications and vitamins three times a day, and he willingly swallows every pill, which is another blessing. As his personal assistant, I arrange all of his appointments, consult with his team of therapists and other professionals who work with him, take care of his finances, deal with the insurance company, and do his laundry. (To be fair, I also make appointments and do laundry for his dad.) Since he cannot drive, Ed and I chauffeur him wherever he needs to go.

While we are happy to take care of our beloved son who needs our help and thankful that he has made significant progress in his behavior, we also want him to become more independent. Knowing that he will probably outlive us, we hope that he can live a fulfilled life on his own someday. In the meantime, we keep working with him to develop the skills he will need, praying that God will provide everything Alex needs so that one day he can be independent and not constantly rely upon us or anyone else for most of his needs. As we wait, we hold onto our faith, trusting that God will always take care of Alex.

“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, September 6, 2015

Filling a Need

Some people get it. When they do, we realize that God has put them in our path to fill a need; their presence in our lives is no coincidence. Finding the right professionals to work with our children who have autism is an important task we autism parents face. Over the years, we have been fortunate to find some outstanding individuals to work with Alex while others have been less impressive. At times we have stayed with some professionals longer than we probably should have, not ready to make a change. Sometimes God has to push me out of my comfort zone with both hands so that I know that it’s time to do something new. That happened last fall, and my full understanding of the need for change was clearly reinforced this past week.

Last August, when we took Alex to the pediatric dentist he had been seeing for nearly ten years, we were told that his upper twelve-year molars were badly decayed and would need to be removed. This came as a shock to us because his teeth had been fine when we had taken him six months earlier for a check-up. What was even more frustrating was that we were told this could wait unless the pain became so severe it kept Alex awake at night, which struck us as negligent. In addition, the dentist left this rather important news to a hygienist to relay to me instead of talking to me himself. This was the same dentist who had condescendingly dismissed me repeatedly anytime I had asked about Alex’s wisdom teeth, telling me that we weren’t going to worry about them.

Unsatisfied with the information they had given, I decided to make an appointment with my family dentist, whose judgment and skill I completely trust. He wisely had a panoramic x-ray taken of Alex’s teeth, which revealed that his wisdom teeth were badly impacted and likely damaging the roots of his twelve-year molars, which probably accounted for their decay. He recommended removing the twelve-year molars and the wisdom teeth at the same time and referred us to an experienced oral surgeon. As I explained in my November 9, 2014, blog entry “Healing,” Alex came through the surgery to remove his molars and wisdom teeth­­––as well as the recovery afterward––amazingly well, and we were thankful to have this procedure done by such a skillful doctor.

After this experience, I began to question the pediatric dentist’s decision to ignore my concerns as a parent regarding Alex’s wisdom teeth. Perhaps if he had taken my questions more seriously, Alex would not have lost his twelve-year molars due to the damage by the wisdom teeth. Moreover, I was not happy with his dismissive attitude toward me and insistence that any dental procedures done on Alex be performed under general anesthesia, which carries its own risks. Consequently, I decided it was time for a change. For his next regular dental appointment in February, we took Alex back to our family dentist. Encouraged by the kindness and compassion shown by both the hygienist and the dentist, Alex complied beautifully with having his teeth cleaned and checked, and we felt this was a sign we had made the right decision to change dentists.

When we took him again a few weeks ago for his six-month appointment to have his teeth cleaned and checked, we were pleased that Alex was quite calm and comfortable at the new dentist’s office while they worked on his teeth. However, we were a little disappointed to discover that he had a small cavity. Nonetheless, our dentist felt confident that Alex could handle having the cavity filled because he had been so good during the cleaning and check-up appointments. In addition, we were able to schedule an appointment to have the tooth filled the next day, which meant that we could get this procedure done before I had to go back to school the following week. Or so we thought.

The next day, the appointment began with putting numbing cream on a cotton roll as preparation for the numbing shots. As the numb began to spread through Alex’s mouth, he started to panic at the strange sensation he’d never felt before. (When he’d had his first two cavities filled two years earlier, he had been under general anesthesia instead of a local anesthesia.) He also wasn’t very happy about having the wad of cotton under his upper lip and complained that he had a fat lip. Although he never really escalated, he was anxious and kept grabbing my hands, seeking reassurance. Even though we tried explaining to him that this was temporary and that his lip wasn’t really fat, he was still unnerved (pun intended) by the situation.

Fortunately, our compassionate dentist understood Alex’s anxiety and offered an excellent idea. He gave us a tube of numbing cream and long handled cotton swabs to practice at home with Alex so that he could get used to the sensation of numbness and realize that the feeling does wear off in time. Additionally, he reassured us that Alex’s tooth could wait a few weeks without worrying about further damage, so we could reschedule the appointment when we felt Alex was ready to handle it. Most importantly, he emphasized to us that he didn’t want Alex to be scared, and he didn’t act a bit inconvenienced that Alex wasn’t up to having his tooth filled that day.

After practicing with the numbing cream at home, Alex became comfortable with the sensation of having his mouth numb, and I went ahead and made another appointment to have his tooth filled. Truthfully, I had a lot of trepidation about whether he could handle the numbing shots, the drill, and everything else involved in repairing the tooth. Nonetheless, we prayed that he would not get upset and put our trust in God and our dentist that everything would be okay.

Last Thursday, I scheduled a noon appointment: after lunch, between The Price Is Right and Jeopardy!, and at a time when he is usually fairly mellow. The dental assistant took us back to a large private room where Ed and I could also stay with him comfortably and where they could close the door so that he wouldn’t hear noises from the other procedure rooms. After turning on the television to a baseball game that provided a welcome distraction, our dentist and his assistant compassionately and calmly took care of Alex’s tooth, preparing him for every step of the process by explaining what would happen and praising him for being so cooperative. Thankfully, Alex was remarkably calm and didn’t seem bothered a bit by anything they did to his mouth. He appeared completely comfortable and relaxed the entire time he was in the dentist’s chair, which was a blessing. The dentist did everything possible to reassure Alex, and Alex trusted him completely.

In fact, things went so well that with our approval, the dentist also sealed another tooth to prevent decay since Alex was already numb, and the assistant smoothed a tooth that had been chipped a while ago so that it would not bother his lip and would look better. Not only did Alex sail through the planned procedure, but he also handled the extras added at the last minute quite well. Of course, Ed and I were extremely relieved that things went smoothly, and we were especially proud that Alex handled perfectly a new situation that many people find difficult. We also truly appreciated the understanding and wisdom of our dentist, who knew what Alex needed to feel safe and comfortable and waited until he was ready.

Consequently, we know that God has led us to change dentists to one who can provide what Alex needs. We need someone whom we can trust to take care of Alex and not only make him feel comfortable in a new situation but also provided a good first experience that will make him not afraid to face similar situations in the future. As Alex now ends his nightly prayers, “God bless Dr. Lyzak.”

“He will once again fill your mouth with laughter and your lips with shouts of joy.” Job 8:21