Sunday, May 26, 2013

Autism and Wandering: A Safety Crisis

With the Memorial Day holiday weekend marking the traditional start of summer, many families look forward to outdoor activities, including barbecues, swimming, and vacations. For many parents of children with autism, however, the beginning of summer brings increased responsibilities and a need for greater supervision. Aside from the various issues children with autism face, a growing concern is the problem of their wandering, or elopement, away from safe places, such as home, to dangerous places, including busy streets, railroad tracks, and bodies of water. Despite parents’ concerted efforts to keep their children with autism safe, some of these children are master escape artists who can pick locks, wait until everyone is asleep, scale high fences, and/or run with abandon if given one moment’s chance to flee.

According to the National Autism Association, 49% of children with autism attempt to elope from a safe environment. Many of these children gravitate toward water, where they often drown if they are not found in time. This month the media reported drowning deaths of three children with autism in Ohio, California and Florida, as well as the recovery of a fourth child from a creek in Kentucky, all of whom had wandered from their parents, despite close supervision. Specifically, two-year-old Drew Howell became separated from his family during a vacation in Ohio and drowned in a river before he was found. In California, Mikaela Lynch, a nine-year-old girl with severe autism, wandered from her home and drowned in a nearby creek. While vacationing in Florida, eight-year-old Owen Black, another child with autism, wandered from his mother and was found drowned in the Gulf of Mexico.

In response to these recent tragic deaths by wandering and drowning, the National Autism Association has intensified efforts to make parents and the public aware of this critical issue, sharing information and warning parents to be especially vigilant during the summer months, a common time for children with autism to wander. This week the National Autism Association shared two excellent informative articles regarding wandering and autism. The National Academy Associate’s well-written cover story, “Searching for Children with Autism,” [To read this article, click here.] details not only the seriousness of wandering by children with autism but also the challenges presented in searching for one of these children who has strayed from a safe environment and the need for special training of law enforcement who may be called upon to search for these children. On Friday, USA Today published an article addressing the issue of safety for children with autism entitled “Protecting Autistic Children Starts with Community” [To read this article, click here.] highlighting the need for plans to be put into place, such as Project Lifesaver, to find children with autism who may wander and to protect them from danger.

While any child could wander away from home and need to be rescued, children with autism pose special difficulties that need to be conveyed to anyone involved in a search for these children. In addition to their tendency to wander, many children with autism are nonverbal or have limited language skills. For example, even after years of speech therapy, Alex, who is 21 years old, may not be able to covey his name, address, and phone number clearly to first responders, should he become separated from Ed and me. Also, many of these children have sensory issues in which they overreact to loud noises, bright lights, being touched, or the confusion that may surround an incident in which they have wandered. Moreover, some people with autism, like Alex, have anxiety issues in which their primal instinct of “fight or flight” would engage, making them aggressive toward first responders in a crisis or causing them to continue running away from a falsely perceived threat of strangers trying to help.

Thankfully, Alex seems to have a healthy dose of fear, especially around bodies of water, and has never tried to wander away from us. When he was younger, we took him to swimming lessons, but like his parents, he remains a rather poor swimmer who realizes his limitations in the water. Because he doesn’t like getting water in his eyes, he prefers to stay on dry land. He also has a fear of heights that would likely keep him from climbing a fence designed to keep him contained. In addition, his poor fine motor skills help keep him safe because he cannot undo locks easily, preventing his escape from the house. (In case of a fire, we know that we would have to make sure he escaped from the house safely with our help because of his limitations.) Nonetheless, Ed and I keep constant watch over him, especially when we are away from home, never completely trusting that Alex could wander away from our safe supervision into a dangerous situation.

To protect their children with autism, parents must not only be aware of the prevalence of wandering behaviors but also take steps to prevent their children from getting into dangerous situations. For example, the National Autism Association recommends five inexpensive and simple safety tools: window and door alarms, portable and secure Guardian locks, stop signs posted at home exits as visual cues for children, and for safety in public places, identification information posted on shoe tags or temporary tattoos. [For more information on these recommended safety tools, please click here.] In addition, the National Autism Association offers the Big Red Safety Toolkit, an excellent resource to help parents work with the community to keep children with autism safe. [For more information about the Big Red Safety Toolkit, please click here.] Within communities, parents may need to work with law enforcement officials to develop plans and programs for training first responders how to deal with people with autism as well as developing GPS tracking for children with autism known to wander. With the rapidly increasing numbers of children with autism, as currently reported at 1 in 50 school children with autism, and the statistic that nearly half of them have a tendency to wander, the issue no longer becomes a matter of if a child with autism will need to be rescued but when this crisis may occur. The recent deaths of three precious children remind us that we must continue to work to protect those children who are especially vulnerable and pray that God will keep them safe.

“Turn Your ear to listen to me; rescue me quickly. Be my rock of protection, a fortress where I will be safe.” Psalm 31:2

Sunday, May 19, 2013

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

Sunday, May 12, 2013

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

Sunday, May 5, 2013

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