Summer Plans

Like most young people, Alex is eagerly anticipating summer and planning various activities he wants to do the next three months. Because we have home schooled him for his entire school career, he isn’t really waiting for school to be done; he’s waiting for the end of his parents’ school year when we’ll be done with teaching and freer to take him places. This week, Ed finished his semester of teaching college English, giving final exams and grading final papers, so his summer has already started. However, I still have three more weeks of teaching seventh grade English before I’ll start my summer break. In the meantime, we have been taking Alex to various weekend activities to keep him occupied until summer actually begins.

Every week, I have been checking various local websites listing special events in the community, searching for events that Alex would find interesting. Also, I’m always looking for activities that are free or inexpensive, knowing that Alex could suddenly decide after a few minutes that he wants to leave. Fortunately, we have been able to find a variety of economical weekend events that he has enjoyed. For example, last month we took him to an Earth Day celebration at our county fairgrounds exposition center that featured music and animal exhibits, including one of his favorite animals, turtles. However, the first thing he asked when we got out of the car was, “Will there be food?” Naturally, he was pleased to discover that, indeed, there was food there. A few weeks ago, we took him back to the exposition center for a pet exhibit, where he was able to see lots of cats and dogs. I think his favorite thing about the event, however, was seeing a dog mascot, as pictured below.

Yesterday, we took him to a spring festival at a nearby county park that formerly was a farm. While he was glad to discover that food was being served at this event, too, he seemed to enjoy most watching kids engaged in various activities there. In addition, he was able to watch people flying kites and dogs catching Frisbees, listen to live music, and feed goats, as pictured below. 

Later in the afternoon, I discovered that our favorite local grocery store was having a gluten-free foods sampling event, which I knew he would really like. With several vendors represented, a variety of foods were available for Alex to try that were within his strict gluten-free and casein-free diet. He sampled cinnamon raisin bread, orzo with vegetables, pasta with marinara sauce, turkey lunch meat, and pretzels. In addition, he took home samples of sugar cookies, gingersnaps, and vegetable chips. Needless to say, he thoroughly enjoyed himself since food is a major draw for Alex when it comes to outings.

Even though Alex has enjoyed our weekend outings, he is busily planning things he’d like to do once summer officially begins. So far he has come up with the following list of places he’d like to go this summer: casinos, Cracker Barrel Restaurant, Zao Island (a local arcade/miniature golf course), a hotel, a baseball game, the park, and the county fair. Every day, he also asks us if it’s warm enough to play in the sprinkler, something he likes to do in hot weather. Perhaps the most puzzling suggestion he’s offered is that he wants to go camping. Since we’ve never taken him camping, I’m not sure where he has come up with that idea. Moreover, I’m not a camper, so I’m hoping that taking him to Bass Pro Shop and letting him look at camping equipment will be a satisfactory substitute. As we look forward to the freedom and nice weather summer brings, I am thankful that Alex is coming up with things he would like to do and that he has made such good progress in the past year that we can anticipate fun summer activities as a family.

“But if we look forward to something we don't yet have, we must wait patiently and confidently.” Romans 8:25

Faith of Our Mothers

Shortly after Alex was diagnosed with autism, I remember Ed saying to me that since we could only have one child, it might be nice that he would be a little boy longer because of his developmental delays. While I wish that Alex were more independent for his own sake (and to be truthful, for Ed’s sake and mine, as well), his Peter Pan nature has endearing aspects that I enjoy. For example, because Alex doesn’t care what anyone thinks of him, he never gets embarrassed that Ed or I hold his hand in public because we need to make sure he stays with us in a crowd for his safety. Even though he stands nine inches taller than me and has hands bigger than mine, he gladly wraps his long fingers around my hand and walks beside me obediently, just as he did when he was a little boy.

My favorite shared activity is saying bedtime prayers with Alex, something we started when he was little. Even at 21, Alex likes for me to say prayers with him before he goes to sleep, and we still follow the format of his childhood prayer with “Now I lay me down to sleep, I pray the Lord my soul to keep…” followed by asking for God to bless all our family members, whom we name individually. As he lies in bed, I lean over his bed and place my face beside his with my cheek touching his, and I can feel him relax as his breathing falls into a gentle rhythm while we recite the prayer. Actually, he usually barely murmurs the words as I say them aloud, but his “Amen” is clear. He always follows the prayer by asking why my aunt (who is included in his list of God blesses) has “a little voice,” something he finds amusing about her. Every night I remind him that she isn’t even five feet tall, which makes him grin and chuckle. After that, he lets me kiss him on the cheek or forehead, followed by exchanges of “Love you” and I tell him, “Good night, sleep tight, don’t let the bedbugs bite,” which he also thinks is amusing. Even on the most challenging days, this bedtime routine ends the day on a peaceful note and reminds me what I love most about Alex—his sweet nature, his humor, and his faith.

A few months ago, Alex suddenly started asking about going to church. Because his behavior can be unpredictable, we haven’t taken him to church since he was very small, not wanting him to be disruptive during a church service and bother other people. Having seen enough “typical” children misbehaving during church, I didn’t want Alex to be one of those kids that people turn around and give a dirty look for making noises or fidgeting. Consequently, we have stayed home instead, where Alex has learned his faith from bedtime Bible stories and prayers and our answering his questions about God. The past few years, I have watched Pastor Joel Osteen’s Sunday sermons from Lakewood Church in Houston on television to help strengthen my own faith, and sometimes Alex comes and watches the sermons with me, smiling as much as Joel Osteen does. One day last week, I was watching one of Joel’s sermons on my computer, and Alex decided he wanted to watch it with me. As we listened together, the words of hope and faith seemed to have an impact on Alex, making him smile and bringing him the same sense of peace and calm he has after bedtime prayers. After seeing the positive effect Joel’s message had on him, just as they always have on me, I wanted to see if Alex would enjoy this as a regular activity. Since I have several of Joel’s messages on DVD, we can watch them anytime. This week Alex and I watched Joel’s sermons together each afternoon, and I have been pleased to see how engaged he is in the messages and what a positive effect the lessons seem to have on him.

Yesterday, we decided to go to the Valparaiso University campus so that Ed could stop by his office there, which Alex loves to visit. After Alex had studied the various books on Ed’s shelves and looked up words in the collegiate dictionary, Ed suggested that we walk over to the chapel so that he could take some photographs and Alex could look around there. With no one in the chapel, we didn’t have to worry that Alex might disturb anyone, but his behavior was excellent as he quietly looked around and then sat nicely in a pew. As Ed took pictures, Alex and I sat together, looking at a hymnal he had found. Recognizing a hymn I remembered from my childhood, I began to sing softly, “Joyful, joyful, we adore Thee.” Mind you, I do not sing well, but Alex likes for me to sing to him anyway. He immediately smiled and began rocking gently back and forth to the rhythm of the song. Since Alex is the only person I will allow hear me to sing, his joy was a nice reward for my awkward effort. As we sat together, mother and son, in this beautiful house of God with the Christus Rex, Christ the King, at the front of the chapel with His hands lifted high in victory, I, too, felt victorious. Despite all the obstacles autism has placed in our path, despite all the things that Alex still must struggle to achieve, despite all the frustrations we have faced, our faith has carried the three of us through it all. On this Mother’s Day, after more than twenty years of being Alex’s mom, I am proud of the young man we have raised whose faith in God never wavers. And in the words of the hymn I sang to Alex: “Ever singing, march we onward, victors in the midst of strife, Joyful music leads us Sunward in the triumph song of life.”

“And I am certain that God, who began the good work within you, will continue His work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

The Reality of Food Allergies

Last week, my friend K.C. Wells wrote a terrific piece in response to an article by Renee Moilanen entitled “Parents Should Relax a Bit About Kids’ Food Allergies.” [To read Ms. Moilanen’s article, click here.] Since K.C.’s little boy has severe allergies to milk and eggs, she justifiably didn’t appreciate Ms. Moilanen’s casual dismissal about concerns parents have regarding their children’s food allergies. [To read K.C.’s blog entry “Oh NO You Didn’t,” click here.] While Ms. Moilanen complains that trying to provide class birthday treats for her son is a nuisance when his classmates have various food allergies, K.C. points out that her son has sadly been left out of sharing birthday treats when she wasn’t given prior notice so that she could provide an allergen-free alternative treat for him to enjoy with his classmates. Moreover, Ms. Moilanen has the audacity to say that many parents of children with food allergies are simply overreacting and suggests, “I'll bet that most of the children in my son's preschool class would do just fine nibbling some foods off the allergy list.” I’m not sure what made her think that she could offer such a potentially dangerous idea; the editor’s note above her article clearly states: “Renee Moilanen is not a doctor.” As K.C. notes, her son may need to carry an Epi-pen his entire life because of the severity of his food allergies; he would not “do just fine” eating foods to which he is allergic. Furthermore, Ms. Moilanen minimizes the seriousness of food allergies when she writes, “Each year, there are only about 9,500 hospitalizations in the entire country related to children with severe food allergies.” In response K.C. wisely comments, “Maybe you think that ‘only’ 9,500 hospitalizations due to children's severe food allergies isn't that big of a deal, but I guarantee that being hospitalized was a huge deal to the parents of those 9,500 kids.”

While Alex’s food sensitivities to glutens, which are found in most grains, and caseins, which are milk proteins, are not as serious as those some children face, they have made us vigilant about removing foods from his diet that he does not tolerate well. After reading that many children with autism suffer from food allergies and sensitivities, I requested that Alex’s doctor test him to see if he had any issues with food. Using the ELISA blood test that detects antibodies indicating immune responses to food, we discovered that he followed a typical pattern seen in children with autism in that he needed to be placed on a gluten-free and casein-free diet. After more than fourteen years on the diet, Alex has done quite well by avoiding those foods that do not contain glutens and milk or milk products. The few times that he has cheated on his diet by sneaking foods he shouldn’t eat, we saw behavioral reactions that convinced us he needs to remain on the diet. Of course, Ms. Moilanen would probably disagree and simply think that we should relax and let Alex eat whatever he wants. Clearly, she’s never witnessed what happens when a teenager with autism breaks his CFGF diet by eating a paczki (a Polish jelly donut traditionally eaten for Mardi Gras); essentially it’s the equivalent of giving a kid two double espressos. As they say, “Don’t try this at home.”

In reading Ms. Moilanen’s article, two things struck me as the parent of a child with food sensitivities as well as an autism mom—her lack of compassion for these parents and children and her self-designated expertise. Unfortunately, she is not the only observer who feels confident about criticizing how other parents handle their children, even though she has no first-hand knowledge of the problems the parents are facing. Until we have walked in another parent’s shoes, we have no right to judge their decisions and actions, especially when that parent’s primary motivation is doing what’s best for the health and welfare of the child. Rather than feeling sympathetic toward her son’s classmates who cannot eat chocolate cupcakes, Ms. Moilanen resents their parents for not allowing their children to eat foods containing allergens so that her son can have the birthday treat of his choice. Perhaps a better lesson for her son would be for her to teach him compassion for these children who, unlike him, cannot eat anything their hearts desire.

While keeping Alex gluten-free and casein-free has required research, creativity, and diligence, I’m certain that he is healthier for being on the diet. Overall, he has been very cooperative about not eating foods he shouldn’t, and I think he probably eats a more varied diet than most people because he is willing to try any fruit, vegetable, or meat. As I’ve noted previously, the only foods he won’t eat are popcorn, mashed potatoes, and sometimes broccoli. Whenever presented with a new food, he will always ask, “Does this have glutens or dairy?” Although some people have sympathetically asked about the limitations of his diet and inquired as to whether he’ll always have to avoid certain foods, they have never questioned our decision as parents to keep him on the diet. Fortunately, the increasing number of gluten-free foods that actually taste good have made feeding Alex easier. Moreover, my mom and I both enjoy baking and have learned to make homemade cakes and cookies using alternatives to wheat flour and milk products. Hence, the sacrifice becomes less of a sacrifice, and we are blessed that Alex is so cooperative.

As I reread “Parents Should Relax a Bit About Kids’ Food Allergies,” I noticed a number of parents with children who have food allergies have posted comments highly critical of the article’s assertions. Obviously, these parents feel passionate about protecting their children and don’t appreciate anyone questioning their judgment. Although I’d like to think that the author could learn from the first-hand stories of these parents dealing with their children’s food allergies, I suspect from her tone that she will only resent them even more. God clearly knew what he was doing when he entrusted the children with food allergies to these parents who are willing to fight for their children and keep them safe. As for those like Ms. Moilanen who can only offer criticism and bad advice, well, “Let them eat cake!” We’re too busy taking care of our kids to care what they think.

“God blesses those who are persecuted for doing right, for the Kingdom of Heaven is theirs.” Matthew 5:10

Autism Awareness Month in Review

As Autism Awareness Month comes to a close this week, let’s review what we already know about autism.

1. A lot of kids have autism. Whether the statistics are the accepted 1 in 88 or the more recent 1 in 50 or the suspected even more prevalent numbers of children who have autism, the numbers are increasing rapidly from previous figures of one in hundreds or one in thousands. Moreover, the arguments as to whether the reasons for this startling increase may be better diagnosis or broader definitions of autism or more children actually affected by autism matter less than the reality that many families are dealing with autism.

2.  Despite the large numbers of children diagnosed with autism, research seems to bring us no closer to finding ways to prevent or treat autism. This week, the media reported three research report findings that have questionable usefulness in dealing with autism. One study looked at placentas and suggested that children with autism are born with placentas that have more folds in them than those of typical children, which could be an early marker for autism. However, the study is rather limited, looking only at a fairly small sample of placentas. Also, as Dr. Jonathan L. Hecht, associate professor of pathology at Harvard Medical School, noted, these folds could be the placenta’s way of responding to many kinds of stress, so they may not be specific enough to predict autism. Two other research reports in the news this week discussed developing drugs and vaccines for autism, both of which may be helpful to those currently dealing with autism. However, if drug companies can profit from autism drugs and vaccines, will there be incentive to find ways to prevent autism in the first place?

3. Early intervention is important. Obviously, addressing any issues as soon as they are discovered makes good sense. However, many parents have difficulty getting their children diagnosed early. We suspected that Alex had developmental delays at least a year before he was diagnosed with autism, and we shared our concerns with his pediatrician, who simply reassured us that boys develop more slowly. Would another year of intervention have made a difference? We will never know. Moreover, finding services for children with autism is a difficult task for parents. School districts, overwhelmed with the number of children with disabilities, tend to provide bare minimums when it comes to valuable services, such as speech therapy and occupational therapy. Private therapy is expensive, may not be covered by some insurance, and may not be readily available. Many private providers in our area have long waiting lists because so many children need services. Even if parents know their children have autism and actively seek help for them, they may not be able to get the critical early intervention.

4. Autism awareness is shifting to autism acceptance. Since many people know someone with autism, more people are aware of autism. In an earlier blog entry [March 17, 2013] “Should Autism Be Neither Seen Nor Heard?” I discussed incidents reported in the media where children with autism and their parents were treated badly in public situations. Certainly, people need to be understanding of children who cannot control their behavior at times and sympathetic to parents trying to help their children. This tolerance, however, is not the focus of autism acceptance. Rather, some parents of children with autism and adults with autism want not just understanding but celebrating of autism. This movement known as neurodiversity criticizes parents like us who want to make our children better through biomedical and therapeutic interventions. They claim that autism is part of the personality, and trying to eliminate behaviors is rejecting that child for who he/she is. Indeed, some parents write in their blogs that they don’t want to change a thing about their children with autism. Not surprisingly, I have noticed that these parents typically have very young children, and I wonder if they will feel the same when their children’s behaviors potentially escalate from “unique” to aggressive in adolescence. Nonetheless, those of us who have not accepted autism as a way of life for our children have dug deeper with testing that proves our children have medical issues, such as yeast overgrowth, food allergies, and heavy metal toxicity, that are making them physically ill. Because we love Alex unconditionally, we do not accept that illness is a natural state for him, and we suspect that his behavior is often influenced by how he physically feels. To ignore what the evidence shows would be negligent on our part; therefore, we continue to strive to make him as healthy as he can be. We accept Alex for who he is, but like all parents, we want him to have the best life possible, which is free of the obstacles autism has imposed upon him. Until we are content that he is healthy and happy, we will accept no less for him.

“And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful!” Psalm 90:17

Level of Care

Earlier this month, we had to complete a level of care needs assessment survey for Alex with the help of his caseworker assigned by the state to manage his disability funds. By answering a series of questions about what he can and cannot do, we provide information used to determine the amounts and kinds of support services he needs. At this point, Ed and I are providing nearly all of these services ourselves, but when Alex eventually goes into supported living, this information will be vital to making sure that his needs are met. While it’s sometimes difficult to admit that Alex can’t do certain basic tasks, we know we must be honest in conveying his needs to be true advocates for him. In the past year, he has made good progress in improving his behavior, but he still needs quite a bit of care on a daily basis. As I explained to Ed’s sister last week when she was here visiting, in many ways, Alex is just a giant toddler.

One of the primary areas of needs assessment is self-care. Because Alex has poor fine motor skills, despite years of occupational therapy, he still needs a great deal of help completing basic daily tasks to take care of himself. Moreover some of the medications he currently takes hinder his motor movements, requiring that we assist him. For example, Alex can undress himself, but he lacks the motor planning skills to dress himself independently. If we place a shirt on top of his head, he can pull it over his head and with some help place his arms in the sleeves. Similarly, he needs us to hold his pants so that he can step into the legs. Since he hasn’t mastered zipping, buttoning, or tying, we have to fasten his clothes for him. For this reason, he usually wears clothes that require no fastening, such as slip-on shoes, t-shirts, and track pants with elastic waistbands.

While we are fortunate that Alex can use the toilet independently and never has accidents, we still have to remind him to close the bathroom door, make sure his pants are pulled up all the way when he’s done, and wash his hands afterward. Another self-care issue requiring our help and supervision is grooming. Alex likes to be clean and neat, but his fine motor skills again hinder him doing things for himself, such as shaving, cutting his nails, combing his hair, etc., so we must do these things for him. Thankfully, he enjoys being groomed, so he is very cooperative when we complete these tasks. In addition, we must supervise his bathing and tooth brushing, as he would only remember to clean small parts of himself, forgetting to wash/brush completely.  Specifically, even though he knows he has 32 teeth, he seems to only want to brush the front eight.

Although Alex can feed himself with a fork and spoon, he hasn’t mastered how to cut his food with a knife, which means we have to prepare most of his food for him. His shaky hands make pouring drinks difficult and spilling them a constant likelihood; therefore, we fix his beverages and put them in cups with lids and straws for him to drink. Besides the crucial feeding assistance, Ed and I must supervise Alex’s various medications that he takes throughout the day. While he is cooperative about taking the medicine, he is not capable of following the dosing schedule, and he needs for one of us to place the pills on his tongue so that he can swallow them. However, we are thankful that he can swallow pills, especially since he has to take so many of them every day.

Another area of needs assessment involves self-direction, such as planning. Since Alex’s verbal skills are limited, and his handwriting is nearly illegible, he relies upon me to make phone calls regarding his disability services, doctor appointments, prescription refills, and therapy session, as well as to fill out needed forms for him. As his “personal assistant,” I coordinate all of these important tasks for him and am thankful I’m organized enough to keep all of his appointments straight. The state has also appointed me as his authorized representative to oversee his disability benefits and keep track of money spent for his needs. In addition to contacting various professionals who help Alex, we must also provide transportation since Alex can’t drive or ride a bicycle. Moreover, his lack of judgment when it comes to safety issues means that we still have our childproof locks engaged on the back doors of our cars so that he can’t suddenly open them.  Also, we don’t trust him to walk alone because he is seemingly oblivious to traffic and could easily get hit by a car if he weren’t paying attention.

Alex has other safety concerns, as well, that we must address. To prevent him from getting into things that could hurt him, we have childproof covers on our basement and garage doorknobs so that he cannot go into those places without our supervision. In addition, we still have some of our cabinets secured to prevent him from getting into potentially dangerous things. Because he called 911 a few times to see what would happen when he was younger, we have hidden our phones so that he cannot call in false alarms. In addition, we have hidden away in boxes most of our breakable knick-knacks after he went through a phase where he would throw things to get attention. Similarly, we keep our bedroom door locked at all times because in the past Alex had an annoying habit of dumping my jewelry box onto the floor, making a mess. Although he is probably past that destructive stage, we have not tempted fate. Once again, we have had to make our house toddler-proof, or in this case, Alex-proof.

As we look toward the future, we anticipate that Alex will continue to make good progress with his behavior so that we can trust him more and gradually ease restrictions around the house. We also hope that his motor skills will improve so that he can do more tasks independently and safely. Until he is ready to do things for himself, however, Ed and I will continue to walk a step behind him, making sure that all his needs are met.

“Care for the flock that God has entrusted to you. Watch over it willingly, not grudgingly--not for what you will get out of it, but because you are eager to serve God.”  I Peter 5:2

Nice to Meet You. How Many Teeth Do You Have?

 

This past week was an interesting one for Alex because he had an opportunity to meet two new people and visit with three more that he hadn’t seen in a while. Although a stereotype of autism is difficulty in adjusting to new situations, Alex loves meeting new people because he can ask them his somewhat offbeat questions as he tries to get to know them better, or at least so that he can mentally quantify them in his mathematical mind. When most people meet someone for the first time, they ask about the other one’s occupation, family, hobbies and interests, etc. However, Alex only really wants to know things that can be answered with a number. In many ways he reminds me of a quote from one of my favorite books The Little Prince in which the narrator criticizes adults for their fascination with numbers, stating, “Grown-ups love figures. When you tell them that you have made a new friend, they never ask you any questions about essential matters…Instead, they demand: ‘How old is he? How many brothers has he? How much does he weigh? How much money does his father make?’ Only from these figures do they think they have learned anything about him.” Indeed, Alex must truly be a grown-up because he sees nothing wrong with any of these questions, and if we hadn’t warned him repeatedly about not asking adults their age, weight, and salary figures, he would boldly ask for this personal information.

On Monday, he met his new behavioral therapist, who will replace his current behavioral therapist who is moving out of state. His current therapist, Melissa, has been very good to prepare him for the change and allowed him to ask questions to ease any concerns he might have. To make the transition smoother, the two therapists will both see Alex for a couple of sessions so that the new one can observe the therapy session routines and so that Alex can be with a familiar person as he gets to know the new one. When I first met his new therapist last week, I knew right away that Alex would take to her instantly because she has a pleasant voice, something he values greatly. After Melissa introduced the new therapist to Alex, she asked him if he’d like to ask her any questions. He turned to me, knowing full well my answer would be no, and inquired if he could ask her age and weight. I reminded him that we don’t ask adults those questions and suggested that he try again.

Undaunted, he asked her how tall she is, and she told him that she was very short at 5’1”, and I could see him mentally putting the four of us in a lineup of her at the shortest, me next at 5’3”, then Melissa at 5’6”, and himself the tallest at 6’0. This made him smile. Next, Melissa explained to the new therapist about Alex’s system of ranking people’s voices, an imagined range he calls “dropodos,” and asked Alex to tell each of us what our dropodos level was. In line with our heights, from shortest to tallest, each of us was assigned a number corresponding to his perception of how deep and strong our voices are. Alex was further fascinated by his new therapist’s voice because, as a native of Turkey, she has a slight accent, something he finds desirable in people, perhaps because he has grown up listening to the Brooklyn accents of my husband and his family and the Southern accents of my family.

After Alex had noted her height and voice, I knew what his next [odd] question would be. “How many teeth does she have?” I’m not certain why Alex needs to know this information, but I suppose this numerical value is just another way to classify people and perhaps measure their ages since he knows children have fewer teeth than adults do. Also, Alex has always enjoyed going to the dentist, and he may associate thinking about teeth as a pleasant experience. Nonetheless, he was delighted that his new therapist had an intriguing answer for him. Like him, she currently has all 32 of her teeth, but she explained that in June she will have either two or four of her wisdom teeth removed. Unfazed by his unusual question, she told him that she can tell him more about it in a couple of months, when she will be able to update him with a new tooth count. This answer delighted him so much he shuddered with joy. Consequently, their first meeting was a success because Alex found all of her answers to be satisfactory.

On Thursday, Alex had a surprise visit from Ed’s family, who flew in to Chicago to see my nephew’s graduation from Navy boot camp this weekend and stopped by to see us, as well. Knowing that he would repeatedly ask us when they would arrive, we didn’t tell him they were coming beforehand. Handling the surprise amazingly well, he was just happy to have people that he could ask his series of questions. Because Ed’s sister and her husband had been here a couple of years ago, he remembered them, but he had new people to interview in Ed’s younger sister, whom Alex hadn’t seen in many years, and in my nephew’s girlfriend, whom we had not met before. Since Alex knows everyone’s birthdate in the family, he didn’t need to ask his aunts or uncles their ages, and I cut him off before he could ask my nephew’s girlfriend. I could see the wheels turning in his mind that he really wanted to ask how much everyone weighed, but wisely chose instead to ask them their heights. He found it interesting that his two aunts and I are all exactly the same height, but he seemed more pleased to have discovered that his uncle is taller than he is.

After lunch, Alex decided to resume his questioning by asking his aunt how many teeth she has, and she kindly obliged him by actually sitting there and counting them aloud for him. This thrilled him, as he again happily shuddered because someone was taking his question seriously. She went on to explain that while her son was in boot camp, they removed all of his wisdom teeth, so he had gone from 32 to 28 teeth recently, which Alex also found interesting.

We’re pleased that Alex has an inquisitive mind and enjoys meeting people, and we appreciate those who seem to understand his need to ask somewhat unusual questions to get to know them. I guess one good thing about Alex’s gift for numbers and excellent memory is that he would make a good witness: he could easily tell a person’s height, describe the person’s voice, and detail their dental records. Fortunately, he will likely never need to share that information, but that knowledge allows him to remember the people he’s met, using the parameters that have meaning and value for him.

“Cry out for insight, and ask for understanding.” Proverbs 2:3

A Week in the Life with Autism

This past week began Autism Awareness Month, and many people whose lives have been touched by autism have used this time to make others more cognizant of this epidemic. For parents of children with autism, awareness involves more than wearing the distinctive autism puzzle-piece logo or lighting blue lights. Autism awareness is a way of life for us. Yesterday I read an excellent blog entry written by an autism mom who detailed a typical day in the life of her family. [To read this article, click here.] Impressed by her devotion and her willingness to share what her life is really like, I decided to try and do the same. However, I got bogged down thinking about how much time we spend giving Alex pills and fixing food for him throughout the day, as well as helping him with tasks he cannot complete on his own. Instead of providing an hourly report as she did, I decided to write about the highlights of our past week so that others can see that having a child with autism—even an adult child, like Alex—entails planning, coordinating, and supervising in ways different from those of parents of typical children. With that in mind, here is a glimpse of last week with the Byrnes.

Saturday—We had a 10:00 appointment with Alex’s new doctor, who wanted to see him a month after his last visit to see how he was progressing with the supplements he had recommended. After I explained how we had gradually phased in vitamin D, gentian violet, probiotic with prebiotic, and vitamin C over the past few weeks, the doctor carefully examined Alex. Fortunately, the yeast overgrowth in and around Alex’s mouth has improved, but he still has some thrush and cheilitis. The doctor suggested increasing the doses of vitamin C and probiotic/prebiotic and gave us a prescription for the antifungal drug Diflucan. He also noted the acne on Alex’s face and recommended a progesterone cream to decrease the inflammation and prevent secondary infection. We were once again impressed with this young doctor’s enthusiasm about making Alex healthier and his compassionate manner.

Sunday—Alex seemed pleased with the contents of his Easter basket. Since he is on strict gluten-free and milk-free diet, we always have to be creative when it comes to treats for him. Fortunately, he is a fan of Kraft Bunny Mallows marshmallow bunnies, jelly beans, and marshmallow Peeps (specifically the blue bunnies), all of which are allowed on his diet. In addition, I found him some nice paperback books in the children’s nonfiction section of Barnes and Noble on some of his favorite topics: the sun, the moon, the earth, thunderstorms, and earthquakes. While I was at the bookstore, I also found a small "computer sitter" figure of Sheldon from The Big Bang Theory, which is one of his favorite television shows, and a street map of towns in Northwest Indiana, where we live. Of course, the last thing I grabbed—the street map—was his favorite gift.

Monday—I received a letter in the mail that elevated my blood pressure from Indiana Medicaid, who provides disability services for Alex. In a previous blog entry, I explained that they had sent us a letter in January threatening to cancel Alex’s benefits because they alleged that I had “failed” to send them his financial records. After several calls to them, they discovered that they had received the information I had sent in a timely fashion, but someone had forgotten to note that in his file. Fortunately, my organization skills and tenacity prevented his benefits from being cancelled. The letter I received this week stated that they had sent us a letter in January indicating his benefits were to be cancelled, and a class action lawsuit had been filed against them because they had failed to notify people properly. Because the letter was not clearly written, I had to read it a few times before realizing that they hadn’t actually cancelled his benefits, which made sense because they have been paying for services for him the past few months. However, to be certain, I logged onto their website, looked up Alex’s files, and discovered that he was still covered. While I was relieved that his benefits were still in place, I wasn’t pleased that they had me worried and that I had to double check to make certain his status was correct.

Tuesday—We took Alex to one of his favorite places, the Target Café, for a snack of potato chips and Sprite. Ed and I have decided that outings to the Target Café provide us with a nice break, as well, since Alex happily watches people come through the store, and an added bonus for him is when small children, whom he finds especially amusing, appear. With something tasty to eat and drink and a good people-watching view, Alex thoroughly enjoys himself and smiles the entire time he’s there. We’re pleased that something so simple and inexpensive makes him happy. Besides, Ed and I are also fans of the hot pretzels they serve there, too.

Wednesday—Alex’s behavioral therapist came for her weekly session with him. Before she arrived, I did my regular inspection of our main floor to make certain that the house looked nice before she arrived. In addition, I filled out his weekly behavioral report for her, noting any issues we had observed during the past week. As usual, I wrote that his primary weakness has been speaking too softly to be heard, which shouldn’t seem like a problem. However, as she has explained to us, not everyone will be as patient as Ed and I are about having him repeat himself. Consequently, we have been working with him to make his voice audible. In addition, she and I worked together on Alex’s newest ploy, leaving in the middle of his behavioral therapy sessions to go to the bathroom. I suggested that she not even mention the topic, as he was likely to obsess on it, and I closed the bathroom door to hinder his efforts to interrupt his session. Our plan worked, as Alex only tried to leave the session once, and I told him to go back because he did not need to go to the bathroom. I think he learned that two women could outsmart him any day of the week.

Thursday—Alex’s case manager who oversees his state disability benefits came to see us to complete his annual level of care survey. The state uses this information to assess what services and funding Alex should receive. To determine his eligibility, Ed and I had to answer several questions regarding his physical mobility, his self-care skills, his self-directional abilities, and his learning skills. His case manager helped us immensely as she was able to explain the nuances of the questions and provide examples of what kinds of skills the questions intended. As usual, Ed and I were in complete agreement on our answers regarding Alex’s strengths and weaknesses. After his case manager left, Ed commented to me that this process was a good news/bad news experience. The good news is that Alex qualifies for disability funding and services; the bad news is Alex has weaknesses that qualify him for disability funding and services.

Friday—Alex was delighted to have books arrive that he had ordered from Amazon using gift cards he’d received for Christmas. He had chosen a book on winning strategies for the dice game Yahtzee, a chart explaining how to bet on the card game blackjack based upon the odds of winning, and a trivia almanac with questions for every day of the year written by one of his heroes, Jeopardy champion Ken Jennings. While he was pleased with these books, he was a little disappointed that another book he ordered had not yet arrived. Because The Handy Science Answer Book is apparently out of print, we had to order it from a specialty bookstore. Although Alex will be thrilled when that book arrives, I will be even happier since I won’t have to listen to Alex ask me if the mail has come, when I think it will arrive, and where I think the book currently is in transit. I just hope he’s as enthusiastic about that book when it finally does get here.

As I reflect back on the past week, I feel thankful that we have found wonderful people to help us with Alex. From his doctor to his behavioral therapist to his case manager, these support people have guided Ed and me with their expertise so that we can help Alex reach his full potential. Now if that Handy Science Answer Book would hurry up and arrive, I would be even more grateful.

“Tune your ears to wisdom, and concentrate on understanding. Cry out for insight, and ask for understanding. Search for them as you would for silver; seek them like hidden treasures.” Proverbs 2:2-4

Testimony

Alex’s comment came out of the blue recently when we were just sitting together in companionable silence: “Mommy talks too much.” Not certain that I’d heard him correctly, I asked him what he had just said. “Mommy talks too much,” he repeated, grinning in a way that either meant he was teasing me or that he was pleased that he’d conveyed what he’d been thinking. His remark made me laugh because I knew there was no malice intended; in our house, I am by far the chattiest one.

What Alex doesn’t know is that besides all the verbal conversations I have with him and Ed, I often speak silently to God throughout the day. From the moment I roll out of bed in the morning until the last few minutes before I fall asleep at night, I thank and question God all day long. From thanking God for the loved ones in my life to asking Him to take care of them to requesting patience in dealing with them at times, I like to keep our lines of communication open at all times.

Since Alex was diagnosed with autism seventeen years ago, most of my prayers have focused upon him: “Please take care of Alex.” “Please heal Alex.” “Please let Alex be all right.” “Please make Alex better.” “Please keep Alex safe.” “Please show us how to help Alex.” “Please give us strength and patience to deal with Alex.” With my constant prayers requesting help, God probably agrees with Alex that I talk too much.

However, I do try to balance my asking with gratitude: “Thank you, Lord, that Alex had a good day.” “Thank you, God, that Alex is doing better.” “Thank you, Lord, that Alex is happy.” “Thank you, Lord, for helping us with Alex.” “Thank you, God, that we can afford to provide Alex with what he needs.” “Thank you, God, for Alex.”

When Alex was fifteen, we were going through a difficult phase with him, and Ed and I felt overwhelmed as to what we needed to do. After that stage had passed, we were explaining to a psychologist who was evaluating Alex that we felt this time had been one in which Alex had not made a great deal of progress. He sympathetically commented that we had been “in survival mode” and could only deal with the big issues because that’s what needed to be addressed at the time.

During that phase when Alex first showed aggressive behaviors that physically and emotionally drained us, I remember trying a new tactic with God: bargaining. “Lord, if you will just make Alex better, I will serve You by helping others.” As Alex’s behavior did not improve, and at times even declined, I repeated my promise to God, reminding Him that I had a plan if He held up His end of the deal. Still, Alex’s behavior seemed really no better. I went into stronger persuasive mode with God: “If You make Alex better, I’ll have more time and energy to help other people.” Yet, Alex continued to sap our energy with meltdowns. Frustrated and upset with our situation, I felt as though God were ignoring me. I wished that He would speak to me as He did the prophets and explain why things were not getting better, at least as far as I could tell.

After weeks and months of seemingly unanswered prayers, I finally realized something important: God had a plan, and I needed to accept it. Instead of worrying about Alex, I needed to trust that when the timing was right, God would make Alex better. Instead of whining about my situation, I needed to find peace that everything would be all right. Instead of negotiating about how I could serve God, I needed to find a way to help others in the situation where I was right then. While I couldn’t serve God in obvious ways by going on mission trips or teaching Sunday school or volunteering in the community, I could find things to do while I waited for Alex to get better. I could pray for people and crochet prayer shawls for the sick and write encouraging notes and be the best person I could be. Mostly, I figured out that my main responsibility was to take care of Alex. Certainly, I’m no saint, and this difficult time was meant to make me better while Alex got better, and he did. Praise God.

Last year, after a year where Alex had been the best he had ever been, the aggressive behaviors returned with a vengeance. Not only was Alex more aggressive, but he also was also physically bigger and stronger, making him a greater threat to Ed and me. What we thought was behind us was now in front of us, and we were disappointed, frustrated, and scared. Despite more fervent prayers, I felt that God had abandoned us in our greatest time of need. Like Christ on the cross, I asked God why He had forsaken us. When we found ourselves at a crossroads where we had to make a crucial decision, He guided us to a hospital where caring professionals knew how to help Alex. During that uncertain time when we didn’t even know if Alex would get better or even able to come home, we received love and support from family and friends whose presence, phone calls, notes, and prayers sustained us. While Ed and I struggled to be faithful, God was faithful.

A year after our ordeal, Alex has continued to get better at home after his weeks of hospitalization. While we have worked at trying to make up for the lost time of the second instance we lived in “survival mode,” Alex shows signs that he can get back to the time where he showed greatest promise, such as commenting on my talkative nature and finding it funny. As we wait for his complete recovery, I remember my promise to God and keep striving to find ways to help others, especially Alex. As I look back on our time of testing which has given us a testimony of faith, I completely understand the wisdom displayed in the lyrics of the Christian inspirational song “Through”: “When I saw what lay before me, I cried, ‘Lord, what will You do?’ I thought He would just remove it, but He gently led me through…Through the pain and through the glory, through it all we’ll tell the story of a God whose love and mercy will not fail to take us through.”

Today on Easter Sunday, as we celebrate the resurrection of Jesus Christ, I thank God for the merciful and loving sacrifice of His Son, who gives us eternal hope, and for always reminding me through my own son that--no matter what--He will always see us through.

“For God loved the world so much that He gave His one and only Son, so that everyone who believes in Him will not perish but have eternal life.” John 3:16

One in Fifty

A few days ago, the Centers for Disease Control released a report with new statistics regarding the prevalence of autism. According to their survey, one in fifty school-aged (6-17 years old) children has autism. [To read an article about this survey, click here.] This statistic represents an increase from the most recent figures of 1 in 88 children having autism. In 2009, the number of children with autism was given as 1 in 110 children, and in 2007, the commonly accepted statistic was that 1 in 150 children had autism. I’m not a math whiz like Alex, but I can easily calculate that in a little over five years, the likelihood of having a child with autism has tripled. Despite this rapid increase, only those affected by autism seem to care.

Instead, critics have diminished the importance of this statistic indicating increased numbers of school children with autism, stating that the research methods were flawed because they were based upon asking parents instead of professionals, such as doctors or educators. Others have indicated that the only reason for the increased rate of autism lies in better diagnosis; large numbers of children have always had autism but may not have been diagnosed. Another argument states that the criteria for autism have been broadened, allowing more children to carry a diagnosis of autism who would not have previously been considered as having autism.

As much as some people would like to contradict the research, the evidence is clear. More kids have autism than ever. Nearly everyone knows someone whose child has autism. Even more sobering should be the realization that these children grow up, and many of them will need support and services their entire lives because they cannot live independently. Despite all the years of autism research I have done, I was shocked to discover that 40% of children with autism cannot speak, according to the Centers for Disease Control. What is society going to do with thousands of adults who cannot function on their own because autism has hindered their social, motor, and language skills?

Another very real concern should be the behavioral aspects of autism that many prefer to keep hidden. A year ago, we had to hospitalize Alex in the behavioral medicine department for severe anxiety and aggression. After several weeks that included sedation, four-point restraints, and trying a variety of doses and combination of medications, we were finally able to bring him home, where he continues to need medications to keep him calm and safe. This week, I have corresponded with three moms of children with autism who are currently dealing with varying degrees of aggression in their children. I’m sure we are not the only four mothers who have struggled with this upsetting and potentially dangerous situation. Autism is not just having a child who cannot speak or look people in the eye; autism can bring behavior that is terrifying for a family. After the sheer hell we endured last year, I’m thankful that God saw us through that trying time and helped us find the resources we needed to return our sweet son and send away his angry, anxious, out-of-control version. After that experience, I have great empathy for those still going through terrible stages with their children who have aggression and autism. Not only do parents need compassion, but they also need support and resources that are sorely lacking in today’s society.

Next month, April, marks Autism Awareness Month. With the startling newest statistics, instead of awareness, those whose lives have been touched by autism should insist on focusing upon autism action. Most people have a sense of what autism is; what is needed is allocating research and resources that actually help children with autism and their families. Also, as I mentioned in my last blog entry, patience, tolerance, and understanding for those dealing with autism would be appreciated, as well. I’ve said before that I’ve felt that my calling as Alex’s mom is to speak up for him because he can’t speak up for himself. I ran across a quote this week by Martin Luther King, Jr. that reminded me of my need to advocate for him: “As my sufferings mounted, I soon realized that there were two ways in which I could respond to my situation--either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.” The only good thing about the increase in the number of children with autism is that the number of parents who are using their situations as “a creative force” will increase, as well, to make a change. While that task may seem daunting, as one of my favorite writers, Willa Cather, once wrote, “With great love, there are always miracles.”

“In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation.” I Peter 5:10

Should Autism Be Neither Seen Nor Heard?

Yesterday, an excellent essay written by an autism mom, Amy S. F. Lutz, appeared in the online magazine Slate. [To read this article, click here.] Entitled “Where Should Special Needs Kids Be Special?”, this piece discusses the issue of how others respond to behaviors special needs people may exhibit in public places. Describing an incident in which another customer in a restaurant treated her teenage son with autism rather rudely for making noises, the author explains her frustration that her apologies for his behavior and explanation that her son has autism were met with more rudeness and no compassion. Along with her own experience, she cites three other examples from the media where employees or customers in restaurants or stores treated people with special needs quite badly. In one incident, a store employee told the sister of a man with autism that she should put him “on a leash.” While the old adage states, “Children should be seen and not heard,” apparently special needs children should neither be seen nor heard, according to some people.

In the essay, she goes on to say that as a parent of a child with autism, she has tried to show courtesy by not taking her child places where his behavior would be rather intrusive to others. At the same time, she knows that he needs experience in social settings so that he can learn to behave appropriately in public. She makes a valid point, stating, “It’s not OK to be offended by the sight of disabled people in the community or to insult them or their family members. However, neither is it OK for anyone, disabled or not, to engage in dangerous, illegal, and/or unsanitary behaviors.” Personally, I would also add "annoying" to her list, but then many people with cell phones would never be able to leave the house.

In previous blog entries, I have mentioned that Ed and I have perfected the skill of getting Alex in and out of public places so that no one would probably even know he was ever there. Because we have never wanted for Alex to be a burden to anyone, we plan any outings carefully, always aware of the potential triggers that might disturb him and always aware of the nearest exits so that we can remove him from the setting if his behavior becomes disruptive. At some points in his life when his behavior was quite unpredictable, he was basically under our imposed house arrest where he was only allowed out of the house to play in the backyard or take rides in the car. During those times, we were not about to risk his having a meltdown for anyone else to have to see.

Nonetheless, we have also wanted for him to have experiences out in the community so that he could learn appropriate behaviors. When his behavior is socially acceptable, Alex goes to stores, concerts, parks, sporting events, and restaurants. Should he suddenly become overwhelmed or simply ornery, we take him home immediately. Because Alex likes going places, the threat of having to leave if he misbehaves is usually enough to keep his behavior in line. However, we don’t always completely trust him, which means that Ed or I  (and often both of us) usually have a firm grip on Alex’s arm or shoulder to keep him right with us at all times so that he doesn’t bother anyone else. A few weeks ago, we took him to an open house being held by the company that currently provides behavior therapy for Alex. Even though his behavioral therapist had prepared him for how to behave at the opening of their new autism center, we were still leery of what he might do in a new place, particularly one that had many objects that would catch his eye, such as games, books, and toys geared for children with autism. Moreover, we are always a little nervous that Alex’s sudden movements that come with excitement might overwhelm other people, especially considering that he is six feet tall.

At the open house, Alex’s behavior was excellent, perhaps because his therapist had prepared him for what to expect, probably because she was there to give him a guided tour, and possibly because I had a firm grip on his upper arm so that he couldn’t get away from me. His therapist noticed that I was holding onto Alex tightly the entire time, and she commented on this at his therapy session the following week. She asked me why I kept my hand on his arm the entire time we were there, and I explained that I don’t trust Alex in new situations and that I don’t want him to behave in a way that makes other people nervous or uncomfortable. I suspect she thought that I was overly cautious, but I never want Alex to bother other people. Certainly, he has the right to be out in public, but he doesn’t have the right to disturb others, and yet I would hope that other people could find some understanding and tolerance for his disability that makes him different.

After reading “Where Should Special Needs Kids Be Special?” I made the mistake of reading the comments posted in response to this enlightening article. Unfortunately, several people decided to post cruel and ignorant remarks showing their contempt for people with special needs. This reminded me of a wise saying I saw posted online not long ago: “I’d rather have a child with autism than have a child who was mean to a child with autism.” As I read through various hateful comments, I realized that I’m less concerned with protecting the world from Alex than I am with protecting Alex from the world. Thankfully, Alex is blissfully oblivious to any nasty remarks or dirty looks some intolerant person may send his way. As his mother, however, I will continue to hold him close and try to shield him from those who lack compassion and cannot see beyond the idiosyncrasies of autism to the kind and pure heart God has given him. It’s truly their loss.

“But Jesus said, ‘Let the children come to me. Don’t stop them! For the Kingdom of Heaven belongs to those who are like these children.’” Matthew 19:14

A New Path

In the more than seventeen years since Alex was diagnosed with autism, I’ve found myself spending a great deal of time searching for resources to help him. Often, looking for people and methods that may help him takes tenacity and patience because those answers aren’t readily found. Other times, things seem to fall into place with such ease, and then I know the hand of God is at work in our lives.

Shortly after we discovered that Alex had autism, I began reading Dr. Andrew Weil’s book Spontaneous Healing, looking for ways to make Alex as healthy as possible. In one section, Dr. Weil discusses cranial therapy, a gentle manipulation of the head believed to improve wellness. At the end of the book, a resources section provides contact information to find practitioners who can provide the holistic approaches Dr. Weil describes in the book. After more research, I decided that I would like to try cranial therapy for Alex and wrote a letter to the address provided in the book requesting a referral.

When I received their response, I was pleased and surprised to find a local doctor of osteopathy who did cranial therapy with her patients. This began a decade long relationship with an outstanding doctor who worked cooperatively with us to help Alex. With her expertise in nutrition, chelation, and cranial therapy, she provided Alex with the care he needed to deal with his food allergies, heavy metals toxicity, and other health issues related to his autism. When she had to retire a few years ago due to her own health issues, we felt a terrible loss, and when she passed away last fall, we felt deep sorrow.

Without the guidance of Alex’s beloved doctor, I have been searching for another doctor who would take a holistic approach to his health and would be willing to follow biomedical methods found to be helpful to people with autism. In the past few years, we have been fortunate to find compassionate and competent medical professionals for Alex; however, other than his psychiatric nurse practitioner and a chiropractic internist, their background with autism has seemed rather limited. Moreover, we have sensed that they were more concerned with treating the symptoms than looking at underlying causes. For example, Alex has been diagnosed six times in the past eighth months with thrush and cheilitis, or yeast overgrowth in and around his mouth. While treating the yeast with Diflucan helps the symptoms and makes them better, something is causing the recurrence of this problem. I knew we would need to get to the bottom of this problem, but I was having trouble finding a doctor who would take a more holistic approach. Feeling frustrated, I have prayed for patience and an answer.

Several days ago, I picked up a magazine advertising local business that had come in the mail a few days earlier. Thinking it was junk mail, I nearly threw it in the trash, but I decided to take a quick look. As I flipped through it, I noticed a picture of a building I recognized: the office building of Alex’s former doctor. A closer look at the ad revealed that a new medical practice had been established in that office building by a father and son who are doctors of osteopathy specializing in nutrition and wellness, like Alex’s doctor. After consulting their website listed in the ad and discovering that they offered the holistic approach I had wanted for Alex, I decided this was an answer to prayers.

Without hesitation, I called their office that Friday afternoon to see if they would accept Alex’s insurance and take him as a new patient. After confirming that they could see Alex, the receptionist was able to schedule us for an appointment for Monday afternoon. Last weekend, I felt hopeful that this new doctor would be able to help Alex, and I looked forward to meeting with him. On Monday, we were pleased we didn’t have to wait for our appointment, and I was immediately impressed by the doctor’s manner: kind, understanding, and compassionate. He interacted with Alex easily, and Alex felt comfortable with him during the examination. As Ed and I discussed our concerns about Alex’s repeated bouts with yeast overgrowth, he listened carefully and explained his ideas clearly regarding what he thought was the cause and what we could do to help Alex. Not only was he likeable, but he also inspired confidence, making us feel that we had brought Alex to the right place.

His assessment is that Alex’s immune system has been weakened, leaving him vulnerable to infections, such as the fungal thrush, the bacterial folliculis, and the viral chicken pox, all of which he has had recently. To strengthen his immunity, the doctor recommended high doses of vitamins C and D3. To address his yeast overgrowth, the doctor suggested that Alex take a prebiotic supplement in addition to the probiotic he has been taking, which will help balance his digestive system. To ease the mouth discomfort the yeast causes, the doctor recommended an old herbal remedy, gentian violet. Armed with this information, we have gradually implemented the recommended protocol, starting with vitamin D3, then gentian violet. Next, we will add the prebiotic, followed by vitamin C.

With Alex, we have learned that adding only one new thing at a time is crucial to measure its effects upon him, whether positive or negative, and the doctor wholeheartedly supported our gradual approach to the new supplements. He wants to see Alex in a month to check his progress, and we hope and pray that the next time we see him we can tell him how much Alex has improved, thanks to his help. The way things have moved quickly and easily into place with this new doctor reminds me that God is in control, and when the timing is right, He will bring the right people across our path and give us a sense of peace, knowing that everything will be all right in the end.
 

“Your own ears will hear Him. Right behind you a voice will say, ‘This is the way you should go,’ whether to the right or to the left.” Isaiah 30:21

Casino

Years ago, Alex became fascinated with slot machines. Even though his mathematical mind understands that the odds of actually winning the jackpot on slot machines are relatively rare, he still remains enamored with them. While some kids want to go to Disney World, Alex wants to go to Las Vegas. Several years ago, a friend of mine who knew how much Alex liked slot machines brought him back a souvenir from a trip to Las Vegas that he still treasures to this day: plastic cups from the casinos used to hold change to play the slot machines. I even made him a slot machine cake one year for his birthday because that was his primary interest at the time. Of course, thinking of Alex in a casino always brings to mind scenes from the movie Rain Man where the Babbitt brothers make a fortune in Las Vegas because Raymond's savant memory allows him to "count cards" and help Charlie win big at the blackjack tables. However, Alex's memory would not be of any use when it comes to the pure luck required for slot machines.

Knowing that he couldn't actually go to the casinos because he wasn't old enough, Alex found good substitutes in home versions of the game, including small slot machine replicas and computer games. One computer game, Casino Empire, allowed him to design his own casino layout and then run the business. Any customers of Alex's casino would need to share his love of slot machines because that's all his casino offered, lots of slot machines. Unfortunately, Alex would spend so much of his allotted money of slot machines that he didn't have enough money to pay the staff, resulting in customer dissatisfaction because apparently the bathrooms were not being cleaned. Alex didn't care; he thought the ultimate casino just needed lots of slots.

As Alex neared the ages of twenty-one, the required age to enter casinos, the more he told us that he wanted to go to a casino and play slots. With the unpredictable behavior he showed last year at the age of twenty, we had doubts that Alex's wish would become a reality anytime soon. However, as he has made improvements, we began to think that he might be able to handle a trip to the casino, especially after he turned twenty-one in December. Knowing how much this trip would mean to him, we decided to offer it as a big reward for good behavior.

At the beginning of last month, we told Alex that if he could behave himself the entire month of February, we would take him to a casino to play slots. He was delighted with this idea, and we discovered that the promise of the trip had benefits for us, as well. Any time Alex started doing something he shouldn't, all we would have to say was, "CASINO!" to make him stop immediately in his tracks. This was a good test for us to see which behaviors he could control. Interestingly, we discovered that Alex could, indeed, control his behavior most of the time when a reminder of the ultimate reward was given. Although he had a few minor slips, for the most part, he behaved very well for the entire month, and we decided that he had earned his reward.

Last Thursday, we had an appointment with the psychiatric nurse practitioner who oversees Alex's medications. Alex didn't realize that her office is only a few minutes from a casino, and we had planned to take him there after the appointment, provided he seemed to be doing well. As we pulled up to the casino that he had only seen in commercials and on the Internet, a huge smile crossed his face, knowing that his wish had finally come true.  Filled with hundreds of slot machines, the Blue Chip Casino lived up to Alex's expectations. Although we were concerned that he might experience sensory overload from the crowds, the flashing lights and sound effects of the slot machines, and the cigarette smoke in the air, Alex seemed oblivious to anything that might bother him. Instead, he focused upon only the excitement of getting to play the slot machines.

During the hour that we spent there, he happily played penny and two-cent slots on three different machines. He played a video slot machine that had icons of money and another based upon his beloved television game show, Wheel of Fortune, but his favorite was an old-fashioned slot machine with reels that actually spun and had the traditional symbols of fruit and bars. In all, he won about a dollar and only wound up spending $3.50, which was cheap entertainment, especially since it made him so happy. In fact, he told us he had wanted to go to a casino "for twenty-one years." How pleased we were that his lifelong dream had finally come true! In the end, he decided that he'd like to come back to the casino another time. Of course, we were willing to make the same deal with him; that is, if he behaves for another month, we'll bring him back to the casino as a reward. We just hope that the buzzword "CASINO" works as well this month as it did last month.

"Watch out that you do not lose what we have worked so hard to achieve. Be diligent so that you can receive your full reward." 2 John 1:8

How I Did Not Give My Son Autism

This week, the blog The Thinking Mom’s Revolution published an excellent entry entitled “How I Gave My Son Autism” in which a mother examines possible causes of autism that may have contributed to her son’s autism. [To read this blog entry, click here.] With specific references to autism research, she explains how exposing her son unknowingly to various things deemed safe, including Tylenol and sonograms during pregnancy, potentially made him susceptible to autism. Many of the possible culprits were based upon the recommendations of doctors, such as Pitocin and a Caesarian section during delivery; she was simply doing what medical professionals advised. Sadly, she still feels many of her actions are “unforgivable” because of the effects they have had upon her son.

Like her, I have often wondered what, if anything, I did to contribute to Alex having autism. I have always been a seemingly healthy person who lived a very healthy lifestyle. Nonetheless, my pregnancy with Alex was designated high-risk when I was diagnosed with the autoimmune blood platelet disorder idiopathic thrombocytopenic purpura, which made me susceptible to bleeding. To treat my condition, I had to take the corticosteroid medication Prednisone and intravenous gamma immune while several sonograms monitored his development. When I went into labor almost a month early, he was delivered by Caesarian section. Certainly, I have wondered if any of those circumstances led to Alex developing autism, but I was simply following the direction of doctors whom I trusted. Moreover, those treatments probably saved Alex’s life and mine. I can’t feel guilt for that.

Perhaps looking for better answers and certainly seeking ways to help Alex, I constantly research autism.  As I study the research, I often discover that many of the proposed causes could not be responsible for Alex having autism. In other words, my actions should have prevented giving him autism.  For instance, this month, the media reported a new possible cause of autism: low folic acid. [To read the article “Can Folic Acid Reduce the Risk of Autism?” click here.]  Because I knew that taking folic acid prior to and during pregnancy prevented neural tube disorders in babies, I faithfully took folic acid supplements before and during pregnancy.  By being proactive in that respect, I can feel confident I did the right thing for Alex.

According to another article published this month entitled “Fact Box: 5 Areas of Research into Environmental Causes of Autism” [To read this article, click here.], potential causes of autism include the following: nutrition, mother’s immune system, traffic pollution, chemicals, and medication. To address those issues, I can honestly say that I ate properly and took supplements when I was pregnant, I trusted my doctors who treated my immune system issues, I live in a town with minimal traffic pollution, I avoid chemicals as best I can, and I’ve never taken the anti-depressants specifically cited as problematic. Once again, I can’t take blame based upon these causes.

A third research article that appeared this month also seems to suggest possible causes of autism that do not account for Alex having autism.  The article “Autism Causes and Risks, Latest Findings” [To read this article, click here.] proposes various risk factors for autism, including taking anti-depressant and anti-seizure medications during pregnancy, which I have never taken. The research also suggests older mothers and close births as potentially problematic. I was 29 when I gave birth to Alex, putting me under the older than 35 definition of “older mothers.” Also, since Alex is my only child, the close births theory of having two pregnancies spaced a year apart doesn’t fit our situation, either. Another risk factor, genetics and gene mutations, is a possibility, but not one over which I had any control. Two other risk factors could have affected Alex—fever and prenatal inflammation—as I had flu and ran a fever when I was pregnant. However, I did treat the fever with over the counter medication, which, according to the research, should have helped. Moreover, I would think many pregnant women would run a fever at some point; I question how much this might contribute to autism.

Despite the various research about potential causes of autism, nothing has arisen to name definitively the true cause and what might be done to prevent or cure the epidemic. While I empathize with the mom who wrote “What I Did to Cause My Son’s Autism,” I choose to focus on all the things I did not do to cause my son’s autism. Everything I did during my pregnancy and since Alex’s birth has been focused upon keeping him and me healthy, and everything we have done since his diagnosis of autism was to make him better so that he can reach his full potential. Like all parents, we have probably made unintentional mistakes along the way, but anything we did for Alex was out of unconditional love for him. When any feelings of guilt arise, I must remember that we have always tried to do what we thought was best.  Furthermore, we keep praying for Alex’s complete healing so that he can enjoy life to the fullest and “so the power of God could be seen in him.”

“As Jesus was walking along, he saw a man who had been blind from birth. ‘Rabbi,’ his disciples asked him, ‘why was this man born blind? Was it because of his own sins or his parents’ sins?’

‘It was not because of his sins or his parents’ sins,’ Jesus answered. ‘This happened so the power of God could be seen in him.’” John 9:1-3

Lent and Sacrifice

This past week, Ash Wednesday marked the beginning of the Christian observance of Lent, the time leading up to the celebration of Easter. Several of my friends, some of whom are devout Catholics, have followed the tradition of sacrifice by giving up something during this time. Some have given up candy, others will not use their Facebook accounts, and a few have pledged not to swear during Lent. A discussion arose the other day among my colleague friends, who are an eclectic mix of religious backgrounds, regarding how some people “cheat” by indulging in the “forbidden” by not counting Sundays in Lent and allowing themselves a reprieve or by justifying backslides by reasoning that when they gave up sweets, they didn’t mean cookies, only candy, as if they’re somehow outsmarting God.

Growing up in a Protestant denomination that did not traditionally encourage giving up something for Lent, I always felt sorry for my Catholic friends who were struggling with the temporary loss of something beloved during this time.  Ed, who was raised Catholic, tells of “forgetting” to forego meat on Fridays by having a hot dog. Amazingly he would remember after eating it and would relieve his guilt by promising himself to say Hail Marys or to go to confession. Somehow I imagine God finding his approach to sacrifice by admitting guilt and doing penance more genuine than those who deny themselves yet complain about it the entire duration of Lent.

While I admire those who not only give up something meaningful for Lent, but also do so willingly and wholeheartedly, I am not one to observe that tradition. However, some online conversations this week with fellow autism moms made me realize that for those of us whose children have autism, sacrifice is something we know every day. Of course, all parents make sacrifices for their children, but those whose children have greater needs often must give up more for the sake of their children. Certainly, we don’t want to be martyrs; therefore, others are often not aware of how our lives differ greatly from theirs because we have had to give up things others take for granted. While we wouldn’t trade our children whom we love dearly for anything, we long for a simpler life for them and ourselves.

While parents of typical children breathe a sigh of relief once their infants start sleeping through the night, many children with autism continue to have sleep issues for many years. An autism mom told me this week about never getting a good night’s sleep because her adolescent son still interrupts her sleep. This reminded me of a period when Alex was probably seven years old and would climb into bed with us in the middle of the night. Taking him back to his own bed involved a middle of the night battle, and three people sleeping in a bed was way too crowded. This meant that one of us would be like Goldilocks, searching for a bed that was “just right.” Each night created an adventure to see where we would sleep—in the guest bad, in Alex’s bed, in our bed, with Alex, alone, and rarely the three of us together, just too tired to move. Eventually these nightly meetings faded, and we were delighted that Alex was happy to sleep in his own bed again so that we could all get a good night’s rest.

Another willing sacrifice autism parents make for their children is financial. Of course, typical parents know how expensive raising a child is, but those who have children with autism have additional expenses, including various therapies, such as speech or behavioral therapy that may not be covered by insurance. In addition, those who must be on special diets due to food allergies or sensitivities require special foods that may cost twice or three times as much as typical foods. Also, some parents have chosen to give up their jobs or scaled back their careers so that they can be home more with their children, meaning less family income with a more expensive child. Although we have always been blessed with enough financial resources to pay for whatever Alex needs, I know many families who struggle mightily and sacrifice greatly for their children.

Perhaps the least obvious sacrifice parents of children with autism make is a typical day-to-day existence, the little things that others don’t realize we miss. Often, families whose children have autism can’t take vacations because the change of routine and familiar places would greatly upset the child; others can’t financially afford such luxuries. The last vacations we took were when Alex was a toddler—before we knew he had autism and when he traveled well. Since then, we have not been able to travel with him because his unpredictable behavior would defeat the purpose of a vacation—relaxation. In addition, many parents of children with autism can’t go out and leave their children with a babysitter. When Alex was younger, my parents were always willing to watch him so that Ed and I could enjoy an evening out. However, as he and they grew older, we worried that his behavior could be too much for them to handle. He could move faster than they could, and his need for instant explanations required practice in fast-talking, often giving glib, creative, fictional answers. As my mom once said, “I can’t lie fast enough to suit him, like you can.” Consequently, Ed or I go places separately or the three of us go together or more often we all stay home. Essentially, parents of children with autism establish a new normalcy that is unlike lives in other homes. While most of the time, we adapt to the new routines, we do at times covet other people’s seemingly less complicated lives and feel thankful anytime difficult stages pass that make our lives easier.

And so, while my friends are giving up Facebook, favorite foods, or foul words, I have made a conscious choice not to give up things for Lent. As a matter of fact, I have decided to work on not giving up. I will not give up searching for ways to make Alex better, so I will deliberately seek research and compare notes with other autism parents through Facebook and the Internet. I will not give up chocolate, which keeps me happy and calm, even when Alex tests my patience. I will be honest about my frustrations, which may involve occasional colorful language, so that I can deal with obstacles. Most of all, I will not give up hope, which keeps me going on a daily basis. With the hope that Alex will get better, we anticipate the day when we can look back at the things we have given up and declare that any sacrifices we made out of our love for him were, indeed, worthwhile for what we gained in return. Isn’t that the purpose of Lent, after all?

“Live a life filled with love, following the example of Christ. He loved us and offered himself as a sacrifice for us, a pleasing aroma to God.” Ephesians 5:2