Sunday, January 31, 2016

Vitamin B12 Deficiency and Autism

 
As I have explained in previous blog posts, I find medical research related to autism fascinating and spend a great deal of time reading articles and books, hoping to find ways to help Alex. The Great Plains Laboratory, which has run various tests on Alex to determine metabolic issues, often points me in the right direction through their sharing of interesting medical articles on their Facebook page. This week they posted links to two articles that caught my attention because these research studies focused upon vitamin B12 deficiency, something that I believe is linked to symptoms Alex shows.

One of these articles, “B12 deficiency a concern for long-term care,” was published online this month on January 19, 2016, in Science Daily. [To read this article, please click here.] Reporting on a study done by the University of Waterloo, scientists discovered that people living in long-care homes in Ontario often tested as vitamin B12 deficient. Specifically, 14% had B12 deficiency at the time they were admitted to the facilities, and 38% showed only slightly better levels of B12. After a year, another 4% developed a B12 deficiency. However, those who took B12 supplements had better B12 levels. As this article notes, B12 deficiency can be prevented by taking supplements or eating foods such as meat, dairy, or fortified cereals.

However, as this article states, untreated B12 deficiency can lead to anemia and neurological issues, such as unsteady gait, and even paralysis. Moreover, low levels of B12 have been linked to osteoporosis, lethargy, and mental conditions, such as depression, dementia, and increased confusion. Perhaps physical and mental declines simply attributed to old age may have a nutritional cause––B12 deficiency. Consequently, the research team concluded that people living in long-term care facilities should have yearly blood tests to determine their B12 levels, especially since B12 deficiencies are quite treatable, which means serious consequences can be prevented.

In another article published online this month in Science Daily, studies show that people with autism and schizophrenia also have vitamin B12 deficiencies. This article entitled “Brain levels of vitamin B12 decrease with age and are prematurely low in people with autism and schizophrenia” summarizes research done by Dr. Richard Deth, professor of pharmacology at Nova Southeastern University. [To read this article, please click here.] After studying brain tissue from deceased donors who were otherwise healthy, his team found that children with autism under the age of ten had brain B12 levels three times lower than those of their typical peers. The levels of the children with autism were similar to healthy adults in their 50’s, which indicates that people with autism have a premature decrease in their levels of vitamin B12. Like the study in Ontario, they also discovered that B12 levels were lower in elderly people, which researchers attribute to normal aging.

This research also discovered that the brain levels of B12 were much different than those found in the blood, where B12 is typically tested. Dr. Deth also points out the significance of their findings, stating, “The large deficits of brain B12 from individuals with autism and schizophrenia could help explain why patients suffering from these disorders experience neurological and neuropsychiatric symptoms.” Consequently, he believes that further research needs to be done regarding treating these symptoms with antioxidants, such as glutathione, and methylcobalamin, a form of B12 that supports brain development.

These research studies on vitamin B12 hold special interest for me for various reasons. First, I began reading research about methylcobalamin injections being used for children with autism more than a dozen years ago. After the studies indicated no harmful effects and some positive results, I presented this information to Alex’s doctor, who agreed that trying this treatment was a good idea. After determining proper dosage levels, she prescribed twice a week subcutaneous injections of methylcobalamin, which we ordered from a compounding pharmacy. Her nurse trained me how to give the injections, and Alex was a trouper about the shots, never complaining when I gave them to him. After only a few weeks of these injections, Alex began to toilet independently for the first time in his life; he was nearly thirteen years old. This was an answer to years of prayers and wondering if he would ever be toilet trained. I truly believe that the B12 shots healed nerve damage so that he could finally feel the urge to go to the bathroom, and he has been able to stay clean and dry around the clock ever since then. Consequently, for us the healing from these B12 injections was miraculous. When his doctor retired, we were no longer able to continue this therapy, which subsequent doctors did not think was necessary any longer.

Prior to having his wisdom teeth removed under general anesthesia in November 2014, Alex had blood tests run to check his overall health. Although his psychiatric nurse practitioner also runs blood tests every six months to check his wellness, these were the first tests that indicated Alex is slightly anemic. His family practitioner at the time recommended that he take a low dose of iron supplement to see if this would help the anemia. When he was tested six months later, his levels had remained basically the same, so I asked her if we could try a few months of methylcobalamin injections, as we had done when he was younger. She agreed to a trial run of a few months of the shots; however, when we tested him again, we had to find another doctor because she left town for another job.

In December, we met with a new doctor and explained the interventions we had done with iron and the B12 shots to address the slight anemia. This doctor decided to stop both treatments, even though Alex’s levels had improved slightly, and to have Alex do some different testing in three months. One of the tests he is running is a B12 level, and we will be curious to see what those results show. Of course, if his blood levels are different from his brain, as Dr. Deth’s studies indicate, these tests may not be that useful. In the meantime, I have been giving Alex a B vitamin complex supplement, hoping to stave off any negative side effects from a potential B12 deficiency.

My main concern is that Alex has inherited pernicious anemia, an autoimmune condition in which the body lacks intrinsic factor, preventing the digestive system from properly absorbing vitamin B12. My father was diagnosed with pernicious anemia when he was in his 60’s, and his father and grandfather had pernicious anemia, as well. Although the condition is treatable with monthly B12 injections, my dad has lingering effects of the condition because it was not diagnosed soon enough. Namely, the vitamin B12 deficiency caused nerve damage in the form of peripheral neuropathy, or impaired sense of feeling in his hands and feet as well as impairing his sense of smell.

Armed with this new knowledge and research, I will be even more vigilant in pursuing the cause of Alex’s anemia with his new doctor because I do believe that B12 deficiency may be the cause. The good news is that this condition can easily be treated with supplements, but we want to prevent any further damage to his neurological system and potentially heal damage that may have already been done. As Alex’s mom/legal health care representative/advocate, I will keep praying for God’s healing and pursuing ways to make him better and healthier so that he can reach his full potential and enjoy life as a happy and healthy young man.

“O Lord my God, I cried to You for help, and You restored my health.” Psalm 30:2

Sunday, January 24, 2016

Asked and Answered

 
This week some of my friends posted a list of questions on Facebook that parents could ask their kids to see what they think of them along with the candid answers that their kids gave. Curious to see how well Alex knows his dad and me, I decided to ask him some of these questions. Of course, his problems with pronouns made this a little more challenging, as I had to explain who was “I” and who was “you” by substituting our names. Once he figured out whom I meant, he came up with some pretty good answers. Moreover, I found it interesting that he seemed to take this questionnaire so seriously, answering some questions quickly and confidently, and giving others careful thought, with his chin in his hand as he earnestly pondered the best answers.

What is something I always say to you?  “Thank you” This is true. I thank people all the time, which is probably how I won the “Best Mannered Teacher” award from the local cotillion society twice. I also constantly remind Alex, “Tell [person’s name] thank you,” which may be another reason he chose this response.

What makes me happy? “Going to restaurants” Again, this is true. Anything that involves food and my not having to cook makes me happy. Also, knowing that Alex also likes going to restaurants makes me happy, too.

What makes me sad? “Arguing” What an insightful answer! I hate conflict of any kind and will do anything to avoid an argument. Alex also knows that he will get nowhere arguing with me because as he once noted, “She never changes her mind!”

How do I make you laugh?  After quite a bit of thought, he couldn’t think of any specific funny things that I do, but he did tell me that I am “90 percent funny.” I’ll take that A- in humor.

What is my favorite thing to do? “Watch NASCAR” Yes, the boy knows me well.

What do I do when you’re not around? “Watch TV” Again, the boy knows me well.

What am I really good at? Without hesitation, he answered, “Sudoku.” That would be one of the last things I would have thought of, but he’s impressed with my ability to solve those silly number puzzles he finds fascinating.

What am I not very good at? Again, without hesitation, he responded, “Math.” He knows my limitations well, especially since I frequently ask him to solve number problems for me (except for Sudoku, of course).

What is my favorite food? “Chicken” I’m not sure where he came up with that one, as I could take or leave chicken. Maybe he confused it with my real favorite, chocolate. Both begin with “ch,” after all.

What do you enjoy doing with me? “Visiting Nanny (my mom) and watching Jeopardy” The only thing better than watching Jeopardy with me is the three of us watching Jeopardy together because we are a force to be reckoned with when we put together our various trivia knowledge.

After going through these questions to see what he knew about me, I posed the same questions for him about his dad. This was actually easier because we didn’t have the pesky pronoun issues with “you” and “I.”

He told me that his dad always says “Good night” to him, which is true. This probably makes an impression on him because they always hug good night, too.

Alex said that going to basketball games makes his dad happy, which is also true. On the other hand, he had trouble explaining what makes his dad sad and could only tell me “Ouch.” I guess he meant getting hurt makes his dad sad. I think this was on his mind because Ed recently had minor surgery that required stitches, and Alex seemed concerned about how that was healing.

As with me, he had trouble verbalizing what his dad does that makes him laugh, but he did give him a solid “95 percent funny” rating. I’m not quite sure what Ed does that merits a better grade in humor than I get. I think it has something to do with their ganging up on me and teasing me, which Alex finds even funnier than Ed does.

For Ed’s favorite thing to do, Alex named watching basketball, which is accurate, and he said that Ed “watches movies” when he’s not around, which is also true.

When asked what his dad is really good at, Alex immediately said “math.” I guess this is good since he thinks this is my weakness. When asked about something his dad is not very good at, he thought for a long time and couldn’t come up with anything. Apparently, his dad has no weaknesses in Alex’s eyes.

Alex also named shrimp as Ed’s favorite food, and he said that the activity that he enjoys doing most with his dad is “going places,” and he specifically named going to basketball games, carrying along the basketball theme found in earlier questions.

I think it’s interesting that Alex identifies so strongly with his dad, sharing interests, strengths, and even favorite foods. They do have very similar personalities, so I suppose it’s really not surprising that they like many of the same things.

If Alex had asked me the same ten questions, this is what I would have said about him.

What is something I always say to you? “What would be good?’ “Wait and see.”

What makes me happy? going places, Epsom salt baths, food, music

What makes me sad? waiting, not being able to drive a car

How do I make you laugh? saying funny things, imitating Bob Dylan's and other people's voices

What is my favorite thing to do? going places, especially restaurants and basketball games, reading, listening to music, eating

What do I do when you’re not around? read, watch TV, do Google searches on the iPad

What am I really good at? math, reading, memorizing

What am I not very good at? tasks requiring fine motor skills (e.g. writing)

What is my favorite food? shrimp—the only food that rates 100 percent!

What do you enjoy doing with me? going places (restaurants, basketball games, concerts), watching TV (especially Jeopardy), visiting Nanny, saying bedtime prayers

After we had chatted about these questions and our answers, Alex wanted me to write down the questions for him. Then he galloped away (literally—this is what he does when he’s happy, all six foot of his lanky body) with the list in his hand to his bedroom, probably to review our conversation in his mind. As I did the same (without the galloping, of course), I thought about how fortunate we are that Alex, unlike many people with autism, can speak and express his ideas. Moreover, he has emerged from the isolation that autism can impose, which means he takes an interest in other people and notices the things they like to do. So, what makes me happy? Alex makes me happy, especially because he is probably the happiest person I know. To watch him enjoy life, whether it’s eating shrimp or watching Jeopardy or going to basketball games, is a blessing I never take for granted.

“…Ask and you will receive, and your joy will be complete.” John 16:24

Sunday, January 17, 2016

Savant Syndrome

 
Knowing my fascination with autism research, my mom sent me a link to an online article from The Atlantic published yesterday that I found extremely interesting. In “The Mysterious Link Between Autism and Extraordinary Abilities,” writer Linda Marsa eloquently summarizes research regarding autism savants and potential causes for this phenomenon. [To read this article, please click here.] According to psychiatrist Darold Treffert, savant syndrome “refers to people who have a combination of significant cognitive difficulties, often stemming from autism, and profound skills––‘islands of genius.’” While savant syndrome was first described in medical literature as early as the late 1700’s, only recently has new research begun to find reasons for this rather rare condition.

A study in 1978 concluded that only ten percent of people with autism were also savants. However, new research indicates that one in three people with autism may also be classified as having savant syndrome, due to their exceptional abilities in certain areas. Typically, these savant skills include unique talents in art, music, and mathematics, along with extraordinary abilities to memorize. In addition, some people with autism demonstrate “splinter skills,” such as the ability to calculate complex math problems mentally without paper and pencil.

In the movie Rain Man, autistic savant Raymond Babbitt [who was loosely based upon Kim Peek, a man with autism who has savant skills] demonstrates the savant skill of calendar calculating, where he can name the day of the week when given any date. Another example of savant syndrome in autism may be found in the giftedness of Stephen Wiltshire, a man with autism who is called the “human camera” because he can draw intricate landscapes from memory [His amazing work can be found in You Tube videos.] after only seeing them once.

As this article points out, people with autism may be thought to have lower cognitive function, but perhaps the method of testing commonly used does not properly measure their actual abilities. Specifically, standardized intelligence testing includes verbal instructions, social interactions, and cultural references, all of which may be difficult for people with autism. Consequently, the perception of many people with autism as having “significant cognitive difficulties” may be incorrect. After all, standardized testing has limitations.

Although the cause of savant syndrome has not yet been definitively established, one theory is that injury to the left hemisphere of the brain before birth or during infancy triggers the right hemisphere to compensate for the loss, allowing unusual abilities to develop. Specifically, renowned autism researcher and psychologist, the late Dr. Bernard Rimland, also the father of a son with autism, noted that savant skills are typically found in the right hemisphere of the brain while communication skills, which are often weak in people with autism, are found in the left hemisphere.

This phenomenon of brain compensation has been found in people who have had strokes, neurodegenerative diseases, or traumatic brain injuries. For example, some people who have had brain injuries due to accidents have suddenly developed talents in art and music or newly found abilities to learn foreign languages. Similarly, people who are blind often develop their auditory skills to compensate for their loss of vision.

Perhaps the most compelling research on the connection between autism and savant syndrome has been done by Laurent Mottron, a psychiatrist at the University of Montreal. In brain imaging studies, his team noted that people with autism who had average IQ scores were 40% faster at solving complex logic problems than typical people. He believes that their analytic skills may explain their superiority at manipulating numbers. In addition, these studies showed that people with autism have enhanced perceptual abilities; specifically, they can mentally manipulate 3-D shapes, discern patterns, and spot details others might miss. He states, “People with autism are natural specialists––when they dig in, they quickly become expert.”

In 2012, further analysis of Dr. Mottron’s imaging studies noted that people with autism have enhanced activity in brain regions associated with visual skills, such as object recognition, visual processing and imagery, and the ability to distinguish between two similar objects. Consequently, “These results suggest that enhanced reliance on visual perception has a central role in autistic cognition,” states Dr. Mottron. Moreover, he believes that the enhanced perception found in people with autism helps them develop their logic skills, which makes them able to solve puzzles based upon logic.

Dr. Mottron’s research also indicates that this increased perception helps some people with autism acquire three abilities associated with savants: perfect pitch, synesthesia, which is a phenomenon where people associate hearing sounds with visualizing colors, and the precocious reading ability of young children known as hyperlexia. Dr. Mottron’s team explains the development of these savant skills as the “functional re-dedication of perceptual brain regions to higher-order cognitive functioning.” Hence, the brain areas dealing with perception develop so that that they can do tasks that involve higher-level thinking, such as performing music or reading.

Essentially, Dr. Mottron’s research indicates that people with autism have brains that are more flexible because they use different neural pathways to perform tasks. Mottron theorizes that the enhanced perceptive skills found in people with autism combined with knowledge and the development of expertise lead to savant skills. Essentially, the right hemisphere of the brain overcompensates for what may be lacking in the left hemisphere. Certainly, this research indicates that people with autism should never be underestimated in their abilities. Even though they may not perform well on standardized intelligence testing, their brains clearly function remarkably well.

This research on savant skills holds particular interest for me because Alex possesses savant skills in mathematics, and he was diagnosed with hyperlexia just after he turned four years old. As I have mentioned in previous blog entries, Alex has a phenomenal memory for anything number-related, such as dates, times, and statistics. He spent one summer learning the digits of pi and was able to recite nearly 1500 digits of this irrational number without making any errors. He tells us that he is able to visualize the digits in his head, which also makes him able to do mathematical calculations mentally. In addition, we know that he taught himself how to read at least by the age of three, and we suspect that he was reading as early as age two. However, because he had limited speech at that age, we weren’t certain that he was reading all the books he was perusing, including my college psychology textbooks that he liked to pull off the bookshelf and study for long periods of time.

In addition, Alex has a keen eye for small details that most people would overlook, noticing minor changes in signs, for example. For that reason, he is an excellent proofreader who easily catches mistakes in writing and possesses outstanding spelling ability, probably because he can also see the words in his mind. Although standardized testing has suggested that his intelligence is below average, we know how smart he is. Moreover, we know that God has given him a good mind that may not function like most, but He has also provided Alex with exceptional gifts, including perceptive abilities, excellent memory, and tenacity that will carry him far in life. We just need to give him time to develop his potential, and I have no doubt that he will.

“In His grace, God has give us different gifts for doing certain things well…” Romans 12:6

Sunday, January 10, 2016

Making Choices

 
Last week we encountered a situation where at first we thought Alex was having a setback, but after some analysis, we realized that he was actually showing signs of progress. On Tuesday while working with his behavioral therapist, he became agitated, and we tried to get to the root of his anxiety by asking him questions. This seemed to aggravate him more, as he became increasingly obsessive about what he was going to do on Thursday evening. Probably trying to escape the probing questions of two concerned females, he kept leaving the room and had to be coaxed back so that we could figure out his problem to help ease his clearly troubled mind. All the various calming techniques we’ve taught him didn’t seem to be working, and he was frustrated.

Finally, I resorted to my English teacher mode and helped Alex break down the internal conflicts that seemed to be troubling him. While he was looking forward to Thursday evening, he realized that he had two choices that really appealed to him: watching the new season of American Idol on television or going to a Valparaiso University women’s basketball game. Even though he was eagerly anticipating both events, that created conflict for him because he could not do both at the same time. He had to make a decision between two equally appealing options.

Of course, I thought I had the ideal solution: we could tape American Idol while we were at the basketball game, and he could watch the recorded show later. However, my suggestion didn’t seem to solve the dilemma because he then became upset about when he would be able to watch the taped show. It would be too late to watch it Thursday evening after the game, and he didn’t want to wait until Friday. He found himself in one of those situations where he was simply going to have to make a decision, and he didn’t like it.

While I was concerned that his increased anxiety and OCD over a fairly simple problem indicated a setback, I realized that we had put him in a new situation. For many years, we rarely took Alex places because he became overwhelmed and didn’t behave appropriately. In the past few years, he has learned to deal with sensory overload and has developed appropriate coping and social skills so that he can go to restaurants and concerts and sporting events. Being able to go to a college basketball game has become an option for him in the past year, something that wasn’t on the table before.

In addition, we rarely asked Alex to make decisions. Ed and I made choices for him in his best interests, and he went along with our judgments, trusting us. We chose for him because he was too immature to weigh his options and because he never really seemed to have opinions on some things. When we did offer options, he would earnestly ask, “Which would be good?” If we told him both choices were good, he would sometimes become agitated and demand to know what the better choice was. To avoid a meltdown, we just avoided the choices issue by telling him what we were going to do.

As Alex has matured and made progress in his ability to cope with a variety of situations, we have encouraged him to think for himself, which has meant that he has had to consider the pros and cons and to make decisions. For example, we give him two choices of restaurants on Saturday evenings, and he usually can easily decide the one where he wants to eat. Occasionally, he will revert to his, “Which one would be good?” question, and we then guide him to ask one of us which restaurant we would like, teaching him the courtesy of allowing another person to get his or her choice.

Throughout his life, Ed and I have structured Alex’s days so that he has the routine he craves, and now we know that we must allow him the freedom to make his own decisions. This newly found freedom was the source of his anxiety on Tuesday. However, with the guidance of his behavioral therapist and me, he was finally able to calm down, weigh his options, and make a decision. He wanted to forgo the basketball game, stay home, and watch American Idol. After all, as he reminded us, there was another basketball game scheduled for Saturday afternoon, and we could go to that one.

As I watched American Idol with him on Thursday evening, he clearly had made the right decision because he was enthralled watching the contestants sing and even singing along to familiar songs. His choice was further confirmed after we found out that our basketball team had lost Thursday night. Moreover, he thoroughly enjoyed yesterday’s basketball game, which our team won handily. In fact, he probably enjoyed the game even more since it was the only one he attended this week, making it more special for him.

Yesterday afternoon, he came to me with another decision to make as he discovered that next month the last V.U. men’s basketball home game is scheduled at the same time as the Daytona 500 race that kicks off the NASCAR season. This time, I reigned in my micromanaging mother tendencies and allowed him to weigh his options without insisting that he tape one sports event or the other. I simply told him that I would be staying home to watch the race and that his dad would be going to the basketball game; he could do whatever he wanted. After thinking for a few minutes, he calmly decided that he wanted to watch the NASCAR race. Even though he seemed content with the decision he had made on his own, I reminded him if he changed his mind in the meantime, that would be fine. However, I’m betting that he sticks with his decision.

As parents, we want our children to be independent and make their own decisions. However, we may forget how hard it can be for our children to make those choices at first because we have always either told them what to do or guided them when they did need to choose. Because it has taken longer for Alex to begin his independence, we are just now seeing the struggle of breaking away from us so that he can enjoy the freedom of being a young man while also accepting the responsibilities of the choices he makes on his own. Although his choices this week between a television show and a basketball game were not terribly important, they gave him practice for more pressing decisions in life. Now we just have to step back and let him begin to take control so that he can become all that he is capable of becoming, and we know that God will guide him along the way.

“You will succeed in whatever you choose to do, and light will shine on the road ahead of you.” Job 22:28

Sunday, January 3, 2016

Resolutions

 
As 2015 came to a close this past week, many people made New Year’s resolutions for 2016. This concept of promising to do better in the future engages many people, even though statistics show that most do not follow through on their good intentions. In a Forbes article entitled “Just 8% of People Achieve Their New Year’s Resolutions. Here’s How They Do It,” writer Dan Diamond quotes statistics from a University of Scranton study that shows more than 40% of Americans make resolutions, but only 8% are successful in keeping them. [To read this article, please click here.]

According to Time, the “Top 10 Commonly Broken New Year’s Resolutions” include the following: lose weight and get fit, quit smoking, learn something new, eat healthier and diet, get out of debt and save money, spend more time with family, travel to new places, be less stressed, volunteer, and drink less. While all of these seem to be noble goals, apparently sticking with them is no easy task for most people.

From Dan Diamond’s perspective, the problem with New Year’s resolutions is not with the people who make them and fail to keep them but with how they make the resolutions. He offers four tips to making resolutions that can be followed more successfully. The first, “Keep It Simple,” recommends making fewer smaller goals that can be reasonably achieved. His second suggestion, “Make It Tangible,” involves setting goals that are specific and measurable. For example, instead of promising to eat healthier, a person could vow not to eat “potato chips, fries, or ice cream for six weeks.” For the third tip, he offers “Make It Obvious,” which means sharing resolutions with family and friends and perhaps even social media to hold oneself accountable for the planned self-improvements. Finally, he recommends “Keep Believing You Can Do It,” emphasizing the importance of positive thinking and the need to believe in the ability to achieve the goals.

With all of this information in mind, I came up with three resolutions for 2016, despite my inner protests that I have enough to do with just being an autism mom and that I don’t need to put any more on an already full plate of obligations. However, I also know that I’m still a work in progress and can always make improvements. Of course, I avoided all of the top ten list of failed resolutions, some of which don’t apply to me in the first place. Instead, I focused on the scripture from I Corinthians 13:13: “Three things will last forever––faith, hope, and love––“ to make meaningful resolutions for myself.

First, for faith, I will read my daily devotionals on a daily basis. That seems pretty simple and pretty obvious, but often the busyness of many days causes me to forget or put off reading what I need to know on a daily basis. Catching up on weekends by reading six or seven devotionals just doesn’t seem to have the same impact, and even worse is when I get so far behind in my reading that I am quickly scanning a month’s worth of devotionals more with the motivation of just getting done than with actually getting something out of the reading. Since putting my devotional book on the nightstand beside my bed with the intention of reading before I go to sleep hasn’t worked, I will read my devotionals in the morning, my best time of day mentally, before I check the more trivial information of weather and Facebook updates on my iPad Mini. Interestingly, today’s devotional scripture from Psalm 5:3 confirmed the wisdom of this decision for me: “In the morning, LORD, you hear my voice; in the morning I lay my requests before you and wait expectantly.”

Next for hope, I will certainly continue to hope that Alex will continue to get better. In the meantime, as I try to wait patiently, I will keep busy with things I need to do so that I don’t obsess with worry about him. As an organized person, I rely upon the lists I make of things to do. Recently, I’ve started writing my to-do lists on my Notes app on my iPad Mini, and I feel satisfaction as I erase each item after I complete each task. However, I also felt frustration whenever I couldn’t complete all the items on my list, and those left behind seemed to taunt me. This week, I decided that instead of to-do lists, I would create “ta-da” lists in which I write down each task I accomplished, celebrating what I did instead of bemoaning what I didn’t get done. For example, the other day I was delighted to complete a list that included doing four loads of laundry, taking care of Alex’s needs (including helping him order books from Amazon with gift cards he’d received for Christmas), cooking a nice meal, and getting my schoolwork done, to name just a few items from my “ta-da” list. By this simple shift in methods, I feel more hopeful each day about what I can accomplish instead of feeling overwhelmed by all I think I should be doing.

Finally, for love—“the greatest of these”––I resolve to make time every day for the people I love and for doing things I love, both of which bring me joy. Yesterday, Ed, Alex, and I went to a university basketball game, and this time spent as a family outing—something we haven’t always been able to do––was precious to us. Watching Alex enjoy himself, even his delight at watching a silly commercial on the scoreboard in which donuts jump into a box, makes Ed and me thankful and happy. (I think those donuts jumping into my mouth would make me pretty happy, too, to be honest.)

In an article in Oprah’s O Magazine entitled “The Very Best Resolution You Can Make This Year,” writer Brene’ Brown emphasizes the need for adults to take time off and play. [To read this article, please click here.] She explains that “time spent without purpose,” as described by researcher Stuart Brown, MD, is crucial to human development, specifically creativity and innovation. Off the top of my head, I thought of simple things I enjoy but don’t always make time to do, including the following: shopping for yarn, watching Partridge Family videos on You Tube, and playing the piano. Sadly, Alex hates shopping with me when I look at yarn; in fact, he would rather do anything than go to Michael’s with me, so this would be a solitary play activity for me. However, he does like watching You Tube with me, and he has expanded his eclectic tastes in music from his father’s beloved Bob Dylan videos to my love of 70’s and 80’s pop music. Soon, I’m sure, he’ll be singing along with David Cassidy and the ever-catchy “I Think I Love You.” Finally, I need to get over my lack of confidence in my limited piano playing skills and let my fingers hit the wrong keys even when I’m not home alone. Fortunately, my guys are patient with my errant notes and even seem to like to listen to me play the piano. If not, they can always hang out in the man cave in the basement and turn up the volume on the television. I may even learn to play “I Think I Love You.”

Armed with my daily daily devotionals, my ta-da lists, and time for fun, 2016 could be my best year yet. Certainly, striving for more faith, hope, and love seems like a worthy goal—resolutions definitely worth keeping!

“Behold, I am doing a new thing; now it springs forth, do you not perceive it?” Isaiah 43:19

Sunday, December 27, 2015

Gifts

 
In the family photograph taken a few days ago on Christmas night, Alex is easy to spot. Among the two grandparents, three siblings and their three spouses, five cousins, two nieces’ boyfriends, and a little dog, only Alex and the dog are not looking at the camera. With Ed’s hand on Alex’s shoulder, my right arm around his waist and my left hand holding his left arm, we make certain that he doesn’t suddenly leave the group before the camera timer goes off and snaps the picture with him walking away. Although it would be nice if he were focused and smiling and free of Ed’s and my grasp, we are pleased he is there. Last year was the first time in many years that the three of us could join the rest of the family for a Christmas celebration, and despite all the confusion that fifteen people and a dog can bring, Alex remained calm and pleasant the entire evening. This is a gift.

On Monday, we took Alex to a new family doctor for a regular check-up. In the past few years, we have taken him to various family doctors because some have taken other jobs out of town and others have refused to take our health insurance. Each time we start with a new doctor, I have to recite Alex’s medical history, explaining how various aspects of autism, including gluten and casein sensitivities, candida overgrowth, and heavy metal poisoning, have affected his health. We liked the new doctor’s manner and his interaction with Alex, who was amazingly patient (and an amazing patient) as the doctor carefully assessed his medical history and recent blood test results and then thoroughly examined him.

Pleased with how well this first appointment had gone and what a positive first impression Alex had made, we were content to leave once we had asked and answered questions. However, the doctor turned to Alex and asked if he had any questions. Because Alex usually relies upon us as his legal health care representatives to communicate for him, we were surprised to hear him speak up and ask how long it would take for his toenail to heal. Taking Alex seriously, the doctor had him take off his shoe and sock, carefully examined the toe, and told him about three months, which satisfied Alex. Not only had Alex sat through the entire appointment without becoming anxious about how long it was taking, but he had also become an active participant in the process. This is a gift.

Later that afternoon, he also had a regular six-month appointment with his psychiatric nurse practitioner who oversees his medications for anxiety. Since she has taken care of him for nearly four years, we feel comfortable with her and expected a routine appointment because we knew his blood tests had all shown normal results. However, we didn’t anticipate having to sit in a crowded waiting room for nearly an hour. Wondering whether Alex had used up all his patience during the morning appointment, Ed and I tried to keep him entertained with a book we had brought about—of all things––time. While the two of us became more annoyed about having to wait, Alex remained remarkably calm. This is a gift.

After we were finally ushered from the waiting room to her office, Alex once again showed the progress he has made by answering all of her questions and relying less upon us to speak for him. Despite computer problems that meant she had to write all of his prescriptions by hand instead of the much faster electronic method, Alex sat patiently. When it was time to leave, we thanked her, and Alex walked toward her. Thinking that he just wanted to see what was on her computer screen, Ed and I were pleasantly surprised that he offered his hand to her for a handshake (As usual, he mistakenly extended his left hand instead of his right hand, but still this is progress in his social skills!) and politely said goodbye. This is a gift.

On Christmas Eve, Alex indicated that he wanted to go to church, as we had last year for the first time in many years, mainly because his cousin was singing in the choir. Like last year, we were pleased that he sat quietly yet seemed to enjoy listening to the choirs sing as well as watching children on the stage listening to the Christmas story. This year, as he smiled and swayed to the familiar carols, he also watched the lyrics projected on the screen at the front of the church. And then, he began to sing along. This is a gift.

On Christmas night, as we prepared to leave the family gathering, Alex hugged my parents with his typical loose arms and with his head leaned toward the other person’s shoulder, and then he purposefully headed toward the fireplace. Because Ed and I are always on guard, we followed on his heels, making sure that he wasn’t going to harm any fragile decorations that may have caught his eye. Then he leaned down and gently patted the head of my brother’s little dog who was resting there. Alex, who never pays much attention to animals, apparently wanted to say goodbye to the dog, the only other one in the family photo not looking at the camera. We thought he was oblivious to her presence, especially since she was lying in the corner of the room, but he had noticed her and wanted to show affection to her before leaving. This is a gift.

In the day-to-day busyness of life, especially life with autism, we may not always notice the little things. Yet, this week Alex revealed that he continues to make progress, and God revealed that He is continuing to heal Alex. How thankful we are for these precious gifts!

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” Galatians 6:9

Sunday, December 20, 2015

Fear Not

 
As mothers, our most important task is to raise our children to be happy, healthy, and independent. Consequently, one of our greatest fears is dying before we accomplish that goal. When our children have disabilities that make them rely upon us more, we worry about who might care for our children––even when they are adults––if we were not there to do it ourselves. However, our faith tells us not to fear because God already has everything figured out.

Yesterday, I read an emotional article about a young mother who passed away last week, leaving behind a husband and young daughter along with a letter she left for friends and family. When her husband posted this letter on Facebook a few days ago, her words went viral, shared thousands of times and capturing the attention of the mainstream media as well as social media. NBC Chicago entitled the story “Wisconsin Mom Who Died of Cancer Writes Heartbreaking, Hilarious Letter.” [To read this article, which includes a link to her letter, please click here.]

Certainly Heather McManamy’s courage in facing her death is admirable, but I failed to see what the media described as hilarity. Yes, she had some humorous comments in her letter, but I was more struck by the heartbreaking nature of her words. Even more than the sorrow of leaving behind her little girl, Brianna, I felt heartbroken that she did not seem to have faith in God when dealing with this greatest fear mothers face.

She states: “Whatever religion brings you comfort, I am happy that you have that. However, respect that we are not religious.” While I respect her candor that she was not religious, I wish for her sake and her family’s sake that she had had faith, which her letter seems to indicate that she does not. I think perhaps faith could have brought her comfort as she dealt with cancer and facing death and leaving her loved ones behind. Because I have not walked in her shoes, however, I don’t know that for certain.

What was especially heartbreaking from my perspective was that she does not want anyone to tell her daughter that she went to heaven. In her letter, she requests, “Please, please, please do not tell Brianna that I am in heaven. In her mind, that means that I chose to be somewhere else and left her.” She goes on to say, “Because, I am not in heaven.” I must respectfully disagree with her decision because I believe that knowing that our loved ones are in heaven provides comfort rather than confusion, even for children.

While Alex has been mostly spared of having to deal with the loss of loved ones in his life, he does talk about heaven and people whom he knows are there, including his beloved childhood doctor, his grandfather whom he barely remembers, and his most-admired U.S. President, Ronald Reagan. Moreover, he looks forward to going to heaven someday with anticipation because he indicates that he has a lot of questions he wants to ask God that he can’t find in books or on Google. Somehow I think he and God will have some fascinating conversations one day.

Alex’s complete and confident trust in God allows him to face the future mostly fearlessly, which comforts me as his mother. Last week, he awoke in the wee hours of the morning in a full-blown panic attack, something that has not happened in years. (The next day, Ed and I decided that the combination of dairy-free and gluten-free birthday cake and ice cream along with soy egg nog was not a good snack ahead of bedtime, and we decided to limit his evening sugar consumption to prevent further nighttime meltdowns.) Even in the midst of his adrenaline surge in which he shook and muttered about not being able to count to infinity, Alex knew to seek God’s help along with ours.

With his overly quiet voice, Alex rarely yells, but in the midst of his panic, he kept crying out, “Need to talk to God! Need to talk to God!” As Ed and I tried to calm and reassure him, we reminded him that God is always listening and that he can pray anytime to talk to God. While this isolated incident was upsetting because we hate to see Alex so distraught, we felt comforted that he knew what he needed to become calm: he just needed to talk to God. His faith was rewarded, and God calmed the storm within Alex so that his anxiety disappeared, and he could resume a peaceful sleep.

As Alex turned twenty-four last week, I assessed my work as his mother over the past two dozen years. Yes, he is happy and basically healthy, with the notable exception of autism, but he still has a way to go to be independent. However, as I began thinking about the tremendous strength his faith in God gives him, I felt a sense of accomplishment for teaching him what is most important in life. If something were to happen to me, he would have his faith to carry him, and he would know that he would see me again in heaven. Maybe it’s not as important that we teach our children to be independent as to teach them to depend upon God always, especially when life becomes overwhelming.

With the imminent arrival of Christmas this week, Alex and I have faithfully been counting down the days on our Advent calendar. More than most, he knows the true significance of the holiday, reminding us it’s Jesus’ birthday and looking forward to going to church on Christmas Eve to celebrate. Despite autism, Alex can fathom the significance of Christ’s birth, knowing that his Savior guarantees the ultimate reward in heaven. Consequently, we need not fear troubles in this earthly life, knowing that because God’s plans are good, indeed, we can celebrate with great joy.

“And the angel said unto them, ‘Fear not, for behold I bring you good tidings of great joy which shall be to all people. For unto you is born this day in the City of David, a Savior, which is Christ the Lord.” Luke 2:10-11

Sunday, December 13, 2015

The Eyes Have It: Eye Contact and Autism

 
One of the most obvious aspects of autism is the difficulty with making eye contact. Apparently, eye contact is becoming a problem not just for people with autism but also for young people who spend much of their time looking at cell phones and tablets. Yesterday I ran across an interesting online article from The Wall Street Journal entitled “Just Look Me in the Eye Already” that discusses this issue. Written by Sue Shellenbager and published May 28, 2013, this article points out that lack of eye contact can be a hindrance in work settings. [To read this article, please click here.]

According to research cited in this article, adults typically make eye contact 30-60% of the time in average conversation. However, eye contact should be made 60-70% of the time to establish emotional connections, studies show. As young adults have become accustomed to multitasking and using their mobile devices frequently, eye contact has declined. Psychologists attribute this need to constantly check social media on FOMO, or the fear of missing out on social opportunities. Ironically, while they are checking social media, they are missing out on the chance to interact with others socially in person.

Researchers also indicate that the decline in eye contact has occurred with the increase of telecommuting, where people become accustomed to communicating with others via telephone or computers and not having to make eye contact. However, eye contact can significantly influence others, which makes this skill important in work and social settings. Studies show that good eye contact conveys confidence, determination, and most of all, respect. Those who avoid eye contact are often perceived as “untrustworthy, unknowledgeable, and nervous.”

Studies have shown that eye contact must be held for certain amounts of time to be effective. In one-on-one settings, 7-10 seconds gazes are optimum, while 3-5 seconds of eye contact is best for group settings. In the work setting, too much eye contact (more than 10 seconds) causes the person to be viewed as aggressive or insincere. In social situations, too much eye contact may be a “sign of romantic interest or just plain creepy.”

For many who have autism, eye contact is a skill that must be taught because it does not appear to develop naturally. Some therapists aggressively attack this skill by grabbing children’s faces and insisting that they look at them. Others will repeatedly admonish children with autism: “Look at me!” or “Look me in the eyes!” However, children with autism may avoid eye contact not just because of impaired social skills but also because of sensory issues where they have trouble listening and looking at the same time.

Another possible reason why people with autism have impaired eye contact may be a motor skill issue. In the article “Why Kids with Autism May Avoid Eye Contact,” written by Karen Rowan and published online in Livescience on June 5, 2013, the problem with eye contact is linked to issues with brain processing. [To read this article, please click here.]

This article cites research done at Albert Einstein Medical College in New York in which children were shown a checkerboard pattern on a screen while electrodes measured their brain activity. Typical children showed response in their brains indicating that they were processing this information in the center of the visual field, while children with autism were processing this information in the peripheral field of vision. This makes total sense to me because we often see Alex looking off to the side instead of straight on at something. We have always suspected that his peripheral vision is stronger than his straight-on vision.

This study goes on to suggest that because motor skills are often impaired in children with autism, they may have a reduced ability early in life to control their eye muscle movements. Consequently, they get in the habit of using their peripheral vision instead of looking straight ahead. As a result, they do not develop good eye contact with other people, which is perceived as a poor social skill, but in all likelihood, is more of a motor issue.

Of course, eye contact is an important social skill, and we have worked with Alex so that others do not perceive him as rude or aloof or disengaged. In addition, we have to remind him not to look at people too long who catch his attention, especially little kids whom he innocently finds amusing, because we don’t want anyone to think he is “just plain creepy.” Along with his therapists, Ed and I gently remind him to look in the direction of people’s faces instead of keeping his head down, and we also gently remind him not to stare at people. Moreover, all of us praise him when he displays appropriate eye contact.

Certainly, we want Alex to develop all of his skills so that he can interact with others appropriately, but apparently he is not too unlike typical people his age in his lack of eye contact. Although we are thankful for the progress he is making in this regard, perhaps we just need to give him a cell phone to carry around everywhere, and no one will be the wiser that his issue is motor-related due to autism and not FOMO, due to being a multitasking young adult.

“Open my eyes to see the wonderful truths in your instructions.” Psalm 119:18

Sunday, December 6, 2015

Autism Holiday Shopping

 
Yesterday I began my annual quest to find the perfect birthday and Christmas gifts for Alex. Since his birthday falls nine days before Christmas, the importance of this adventure becomes double as I seek to find items that will not only thrill him for his birthday but will also keep him amused until the highly anticipated Christmas morning. A primary factor in finding these gifts is that they are not dangerous. Over the years, I have rejected toys for the following reasons: (1) toys with small pieces (choking hazard because he chewed on things until he was a teenager and stepping hazard for me because he left things all over the floor for me to find painfully when barefoot), (2) toys that were never intended to be thrown but would shatter if used incorrectly or would do property damage to things in their pathways or would hurt when hitting their intended targets––Ed or I––if hurled by an angry Alex, or (3) toys that for some strange reason he found upsetting (e.g. the “Don’t Like Elves!” phase of 1998). Thankfully, for nearly two dozen years, I have been mostly successful.

This week I read an entertaining essay on the Thinking Moms’ Revolution blog [To read this article, please click here.] entitled “The Great Autism Gift Scramble” that discusses the dilemma we autism moms face every year for our children’s birthdays and Christmas. Specifically, she describes trying to locate a copy of her child’s favorite Disney video Aladdin and the frantic search that ensued. In addition, she explains the “create a gift” problems that arise when children request something unique, such as “the dinosaur that talks and is pink polka dotted,” and she wonders whether she didn’t quite understand what the child wanted or whether the child had imagined the item or whether her child was simply messing with her. Nonetheless, she faithfully attempted to hunt down those desired objects. Last year, her daughter, who is interested in classic Hollywood, requested a movie star nutcracker, sending this devoted autism mom again on a wild goose chase to find the perfect gift. As she explains, “I repeat: you will do anything for them. Besides they deserve this tiny bit of happy.”

Similarly, I read a news article this week about an autism mom in Canada whose twelve-year-old son is obsessed with only the primrose-colored Crayola markers. [To read this news report, please click here.] If he cannot find his precious primrose markers, he goes into meltdown mode. As his mother, Stacey Haley, explains: “No primrose means hell in my household.” After making a plea for people to send her primrose markers, she received packages from around the world containing primrose markers. In addition, Crayola heard her story and also sent her primrose markers; therefore, she has requested that people no longer send markers anymore because they now have plenty. Overwhelmed by the generosity of strangers, she noted, “What started as a little ask for my son has turned into a movement of supportive communities who have gone out of their way to make a difference in the life of our family.”

Fortunately, Alex has not asked for anything elusive, unusual, or nonexistent this year. A few years ago, he wanted old calendars for Christmas, which taxed my brain until I thought about old calendar towels. Then I discovered the magic of eBay, which connected me to people who apparently hoarded antique linen calendars until deciding to sell them to crazy autism moms like me. Now he has a collection of towels from various decades of the 1900’s. Of course, he has moved on from that obsession, and the highly sought old calendars now sit folded in a box as a memory of Christmas Past.

This year, when asked what he wants for his birthday and Christmas, Alex has no requests. I specifically asked him the other day what he wanted when Ed’s sister asked me to ask him so that she could fulfill a wish. Even reminding him that she could track down something in New York that he could not find here, he still was noncommittal, asking me, “What would be good?” With no help from him, I suggested that she send him a gift card from Barnes and Noble so that he could pick out books when he was more decisive.

Of course, this did not solve my problem of what I should get him. Yesterday, I set out in the early morning hours, armed with small envelopes labeled individually with store names and their opening times along with notes about some items to look for and coupons for discounts (and realizing that Alex did, indeed, get his OCD from me). With my Skechers Go Walk sneakers and my Fit Bit Zip to record my steps, I was ready to walk to the ends of the earth (or at least through selected stores in my area) to find perfect gifts for Alex. After four hours and 2.53 miles (according to my Fit Bit Zip), I felt triumphant.

As I scoured the stores’ shelves, I realized that even though Alex is a young adult, most of the same criteria apply for the perfect gift now as they did when he was younger although thankfully he doesn’t throw things in anger anymore. The teacher in me looks for gifts that are educational, items that will encourage developing his speech, language, fine motor, and social skills, which means I spend a lot of time looking at books and games. Knowing his love of sports and music, I look through the fans’ section for his favorite teams and search through the CD’s for something new for his listening pleasure. If in doubt, I always choose something in red, his favorite color. Of course, I also have to keep the annual tradition of getting him at least one calendar, a new Old Farmers’ Almanac, and the latest edition of the World Almanac, which he loves so much that he literally sleeps with it.

While I wish that Alex could give me some guidance about a gift he would really like this year, I suppose I should be grateful that he’s not asking me for something nearly impossible to find. In addition, I think his lack of gift requests probably means at least one of several possibilities:
He trusts me completely to choose gifts he will like.
He has truly become a man, and we all know that men never give good gift suggestions (or at least I have learned this from his father and my father).
He has everything he wants and needs in life, so anything else is just a bonus.
He is totally content with his life and really doesn’t need anything to make him any happier.
As I watched him study with delight the ornaments on our Christmas tree this week, I think that the latter reason is probably the most likely one. After all, as Alex reminds me, Christmas is Jesus’ birthday, and that’s the best reason to celebrate. Certainly, we also think Alex’s birthday is pretty special, and as we celebrate the birth of God’s son, we also thank God for the birth of our son and for all that He has given us.

“Yes, you will be enriched in every way so that you can always be generous. And when we take your gifts to those who need them, they will thank God.” 2 Corinthians 9:11

Sunday, November 29, 2015

While We Wait

 
Today marks the first day of Advent, the season leading up to Christmas. In the Christian Church, Advent, from the Latin word adventus meaning arrival, is a time of anticipation, waiting for the celebration of the arrival of Baby Jesus. In the business world, this first day of Advent comes between the significant shopping days of Black Friday and Cyber Monday, and merchants await the profits to be gained from eager holiday shoppers. For most people Advent is a time of waiting for Christmas marked by a flurry of activity in preparation for this important holiday.

Like many people, Alex eagerly anticipates Christmas, his favorite holiday, counting down the days on the calendar. Like me, Alex is not by nature a patient person. However, he relies upon his beloved numbers and measuring tools of clocks and calendars to help him deal with waiting. Moreover, he has adopted a philosophy about the future, often telling us: “Wait and see.”

This week, we have had our patience tested in situations where we had to wait. On Friday, Alex’s ever-punctual music therapist was late for the first time because he was involved in a meeting that ran longer than he had anticipated. Although he called to let us know he would be late, I knew that Alex was becoming more anxious every minute he had to wait. Checking his watch and the clock on the wall, Alex was patient at first, but as time passed, he became more and more concerned whether his music session would ever happen. Adding to his frustration was that he was looking forward to singing Christmas songs that his therapist had promised the previous week. As I talked him through his anxiety, I gave him the choice to leave or stay, and he chose to stay. The wait was worth the effort because when his therapist arrived, they were able to sing the songs Alex had been waiting to sing all week long. Of course, Alex’s first request was “The Twelve Days of Christmas,” a carol about waiting for the good gifts to arrive.

This weekend, as I ran some errands, I also had to muster up my own patience, as the official start of the Christmas shopping season brought more people out seemingly to get in my way. As I waited in my car for people who acted as though they’d never seen green traffic lights before, waited for people who seemed to want to stand endlessly in front of items I needed to buy, and waited in lines to check out behind people who couldn’t make decisions about how they wanted to pay, I took deep breaths and tried to keep my peace. Knowing that the month of December will be filled with these moments of waiting, I found myself questioning: What do we do while we wait?

A quick concordance search of the Blue Letter Bible online shows that the word “wait” appears in 70 verses in the New Living Translation of the Bible and in 101 verses in the King James Version of the Bible. As I scanned through these verses, I noticed that not only are we told to wait, but we are also told how to wait. The verb “wait” is often followed by the adverbs “patiently” and “quietly.” Scriptures also tell us to wait “confidently,” “eagerly,” and “with eager hope.”

Consequently, we know how we’re supposed to wait, but I still struggle with what I’m supposed to do while I wait. From the time Alex was diagnosed with autism, I have been waiting for him to get better, sometimes patiently waiting, but often times restless and frustrated when progress seemed slower than I thought it should be. To fill my time, I focused on autism research, seeking answers to my questions and trying to find ways to make Alex better.  When I find myself too focused on the future and the “what if’s” both positive and negative, I have to remember to live in the present and have faith that God has already figured out the future for Alex.

When I question Alex about future events, such as which sports team he thinks will win a game or what he thinks the weather forecast will be, he reminds me to watch for what the future holds by saying, “Wait and see.” Not only does he understand that waiting––even though he and I both dislike that process––is part of life, but he also holds anticipation for what is to come. Moreover, he has an expectation that waiting will bring a reward. To understand the value of waiting requires peace brought with patience along with hope bolstered by faith. Alex’s complete and unquestioning faith in God allows him to believe that if he waits, he will see something good, even if it’s as simple as being able to sing “The Twelve Days of Christmas” with his music therapist.

During this sacred yet busy time of Advent, I pray that I remember to be patient as I wait, knowing that good things will arrive in their good time. Just as certainly as I know that Christmas will arrive on December 25th, I also know that Alex will get better in time. Trusting God, I will strive to wait patiently, quietly, eagerly, confidently, and with eager hope at what He has planned for Alex’s future, which I have no doubt will be something to see.

“Such things were written in the Scriptures long ago to teach us. And the Scriptures give us hope and encouragement as we wait patiently for God’s promises to be fulfilled.” Romans 15:4

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