Retraining and Regaining the Appetite

About a year ago, Alex suddenly became a picky eater. Typically, children with autism do not eat a variety of foods, but Alex had always been good about trying new foods and eating well. In fact, the only food he refused to eat was popcorn. We knew we were blessed that he had such a healthy appetite and were thankful this was one problem of autism that was not a concern for us. Knowing that Alex goes through phases, we truly believed that within a few days or weeks, he’d soon tire of eating the same few foods and go back to his more expanded diet and healthy appetite. We were wrong.

According to the online article, “Mealtime and Children on the Autism Spectrum: Beyond Picky, Fussy, and Fads,” by Marci Wheeler on the Indiana Resource Center for Autism website, children with autism often have medical, behavioral, and/or environmental issues that cause them to have problems eating. [To read this excellent article, please click here.] She notes that medical concerns must be addressed first, and resolving those health issues is crucial to getting the child to eat properly. Specifically, she explains that some children with autism may gag or choke while eating, and others have food allergies or gastrointestinal disorders that affect their eating habits. In addition, some children with autism cannot feel or detect hunger, causing them to have no interest in eating. For that reason, allowing children with autism to wait until they feel hungry enough to eat, which is sometimes suggested for picky eaters, is a method that should not be used since they might never feel hunger pangs. Therefore, children with autism need medical evaluations to see what health conditions may be behind their poor appetites.

For Alex, we know what triggered the sudden change in his appetite. A mild virus that was going around last spring seemed to take away people’s desire to eat for about a week. Once that week was over, however, Alex still had little interest in eating. We soon discovered that he had also developed thrush, an overgrowth of yeast in the mouth and throat, probably because the virus had weakened his immune system. Yeast overgrowth has plagued Alex over the years, as it does many people with autism, but he typically responds well to antifungal medications. The thrush would also explain his decreased appetite because it causes his mouth and throat to be sore; hence, he doesn’t feel like eating. While this case of thrush was especially virulent and required repeated visits to the doctor and several rounds of antifungal medication, the yeast eventually was under control. Nonetheless, Alex’s lack of appetite continued.

Not only did Alex have little interest in eating, but he also developed anxiety issues around mealtimes. He would have panic attacks when it was time to eat, manifested in his body shaking, caused by adrenaline surges. While we had addressed the medical problems, then we had behavioral concerns about eating appear. Working with his behavioral therapist, we discussed ways to help Alex deal with his anxiety about eating. While we knew we had to encourage him to eat, we didn’t want mealtimes to be stressful for him. Consequently, to get him to eat, we allowed him to eat healthy foods that appealed to him instead of what we were having for dinner, permitted him to leave the table as soon as he was done eating, and let him eat lunch in his bedroom, as he requested. So long as he ate, we were willing to compromise our usual mealtime routines. However, this might not have been the best approach because his picky eating was not getting any better, even though his anxiety about mealtime did improve.

The third type of feeding issue in autism discussed in Marci Wheeler’s article is environmental, specifically sensory concerns. She explains that for many children with autism who have sensory issues, the look, feel, smell, taste, and even sound of food can be problematic when eating. For this reason, she recommends that parents assess their child’s eating patterns, considering what, when, with whom, how, and where their children prefer to eat. Once these preferences are established, parents can work with their children to encourage them to eat foods that are similar in taste, temperature, texture, and color to those they will already eat.

Since Alex’s current preference is for foods that are soft and smooth, especially applesauce and strawberry smoothies, I did an online search of foods recommended after dental surgery. Because we have ruled out any problems with his teeth and gums by taking him to the dentist twice in the past year, I suspect that he prefers these foods because they are quiet. After looking over the recommended foods, I made a list of those I thought Alex could try again, such as cranberry jelly, green beans, bananas, coconut milk yogurt, dairy-free lemon pudding, and turkey. Even though he has maintained his weight and takes vitamin, mineral, and protein supplements to make up for what nutrients his limited diet may be lacking, I knew we needed to expand his palate to make him more willing to eat the variety of foods he used to enjoy. Now I was ready to implement the excellent strategies outlined in the article about picky eaters.

In this article, Marci Wheeler offers not only tips for getting children with autism to eat but also explanations of why these approaches are crucial to success. A summary of her suggestions includes the following:

1. Parents must remain calm and not make mealtimes a struggle. Instead, eating should be a pleasant experience for the child, and the child needs to feel a sense of control.

2.  To help the child desensitize to sensory issues, children need gradual exposure to foods. Too many new foods at once can overwhelm the child. Moreover, offering a food similar to one the child already likes is more apt to be successful.

3. Sneaking other foods in preferred foods is not a good idea, as the child with autism is likely to detect the hidden food and may refuse to eat anything after that, fearing being tricked again.

4.  Eating with others is a social activity that needs to be encouraged, especially since others can model positive eating behaviors for the child. The time of sitting at the table may need to be increased gradually, and a timer may be helpful for the child to know how long he or she has to sit at the table.

While we had not pressured Alex to eat for fear of intensifying his anxiety about mealtimes, I knew we needed to be a little more encouraging. In addition, once I had come up with “new” foods similar to those he already likes, I decided to offer them gradually, list all their positive attributes, and praise Alex enthusiastically for trying them. (Knowing how keen Alex’s senses are, I have never tried to sneak any foods into him, fearing that he not only wouldn’t eat but also that he wouldn’t trust me about other issues.) Finally, this week, I changed the mealtime setting for him. Instead of eating lunch in his bedroom, as he preferred, he now must eat lunch at the kitchen table. Amazingly, he took my new directive quite well and didn’t balk at this change. In addition, I told him that he must sit at the dinner table with his dad and me, even when he is finished eating, so that we can have nice conversation. Again, he has taken this change remarkably well and seems to enjoy chatting with us while we eat. I’m also hopeful that we are desensitizing him to sensory issues while he sits there seeing, hearing, and smelling the food we are eating.

Although we have only just begun to implement the new feeding plan, we are hopeful that we are on the right track to helping Alex regain his healthy appetite. I’m thankful for the suggestions and explanations presented in the article because they have given me ideas about how to encourage Alex to make positive changes. We’re also pleased that Alex seems to be responding well to the changes, trying some different foods successfully, cooperating with our requests to eat at the table, and showing no signs of anxiety around mealtime. Most of all, we’re grateful to God, who guides us as we try to help Alex be happy and healthy. Hopefully, Alex will continue to increase the number of foods he will eat so that he can enjoy all the foods he once happily savored.

“Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!” Psalm 34:8

Benefits of Cognitive Behavioral Therapy in Autism

Last month, Science Daily published an online article about new research touting the value of cognitive behavioral therapy for children with autism. [To read this summary article, “Cognitive behavioral therapy can improve emotion regulation in children with autism,” please click here.] Based upon an article published recently in the Journal of Child Psychology and Psychiatry, this research was done at York University’s Faculty of Health under the direction of Associate Professor in Psychology Jonathan Weiss.

In this study, sixty-eight children with autism aged eight to twelve years old were randomly assigned to two groups. The first group received ten sessions of cognitive behavioral therapy right away, and the others were on a waiting list to receive therapy. The therapy sessions involved teaching the children to develop the emotional tools they need to face challenging situations. Their parents were also part of the therapy sessions, acting as co-therapists, practicing what they learned with their children. As Dr. Weiss notes, “We believe that children grow and develop and improve within the context of healthy families and this intervention aids to help the family unit more broadly to be the agent of change.”

The children’s behavior and emotions were assessed at the beginning and end of the research study. To prevent bias, they were evaluated by a psychologist who was not involved in the therapy sessions and who did not know which children received therapy or were on the waiting list. Seventy-four percent of the children who received therapy were rated as improved in contrast to just thirty-one percent of those who did not receive therapy. In response to these findings, Dr. Weiss notes, “We showed that children who received this treatment right away improved in their ability to manage their emotions, and in overall mental health problems, versus kids who were waiting for treatment.”

This groundbreaking research shows that cognitive behavioral therapy can help children with autism deal with not only anxiety but also other emotions, such as sadness and anger. Learning to manage emotions is crucial in autism since more than seventy percent of children cope with emotional issues: about 50% deal with anxiety and another 25-40% struggle with anger or depression. Because of the success researchers in this study found in using cognitive behavioral therapy with children who have autism, Dr. Weiss concludes, “We can use this same intervention to improve children’s skills more broadly regardless of what emotional challenge they have. We can make them more resilient to many emotional and mental health issues.”

According to the Mayo Clinic website, cognitive behavioral therapy involves working with a mental health counselor in a structured way to learn how to cope with stressful situations in life. The goal is to see challenges more clearly and to respond to them more effectively. Therapy sessions often involve learning and practicing relaxation and coping skills as well as stress management. Cognitive behavioral therapy usually includes identifying problems in life; discussing thoughts, feelings, and beliefs about these problems; recognizing thoughts about these problems that are negative or inaccurate; and reshaping any negative or inaccurate ways of thinking.

Although many children with autism participate in applied behavior analysis therapy, Alex has truly benefited from cognitive behavioral therapy. Working one hour per week with his behavioral therapist (as opposed to the more than twenty hours per week typically found in ABA therapy), Alex has learned to verbalize his concerns and to recognize faulty reasoning. For example, he tends to exaggerate problems in his mind, thinking that they will last “forever” and “never” be solved. His therapist has taught him coping and calming skills so that he can rationally analyze a situation and feel more in control when anxiety strikes. Moreover, she has taught him positive affirmation statements to recite whenever he feels overwhelmed, such as, “Everything will be all right.” Because his mind is quite logical, Alex has responded to the methods of cognitive behavioral therapy very well, and we have seen significant gains in his behavior and ability to deal with his emotions. Moreover, we are grateful for the kindness, patience, and expertise of his behavioral therapist who recognizes his potential and strives to make him better.

Hopefully, the successful results found in the recent research study on using cognitive behavioral therapy to help emotional issues in autism will encourage other therapists to use this form of therapy with more people who have autism. As we have seen first-hand, cognitive behavioral therapy teaches valuable skills to cope with a variety of issues in life, even beyond those posed by autism. Once again, we are grateful to God for leading us to a method and a therapist who can provide Alex with the guidance he needs so that he can overcome the obstacles of autism and lead a happier and more productive life.

“Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect.” Romans 12:2

A Mother's Work

Last week when I went to vote in the primary elections, a friendly woman who regularly works the polls greeted me by name. The mother of one of my high school classmates, she has known me since I was a teenager. One of the first questions she asked me was whether I was still teaching at the middle school, and I told her that I had retired from teaching. Her next question, which other people have also asked me after finding out I retired early, was, “What are you doing now?” I suppose many people my age would use early retirement as an opportunity to find a second career, engage in volunteer work, and/or travel the world. However, I answered her honestly, explaining that I am taking care of my adult son with autism. Essentially, I retired from teaching part-time to becoming a full-time personal assistant to Alex and Ed. Frankly, I have no idea how I ever had time to teach and am thankful I could retire early.

In one of my favorite episodes of the television show Little House on the Prairie, Laura expresses disappointment to Ma that getting married means she won’t be able to become a teacher. Her mother, who had also been a teacher, reassures her that as a mother, she will play a variety of roles, including being a cook, a nurse, and most of all, a teacher, to her children. Certainly, of the many jobs I perform in my role as Alex’s mom, teaching has been one of the most fulfilling. Since we opted to home school him throughout his school years, we have been responsible not only for teaching him practical life skills but also academics, as well. Based upon his keen knowledge in a broad range of subjects and his love of learning, apparently Ed and I did a fairly respectable job as Alex’s teachers.

In addition to teaching Alex, I continue to carry out a variety of responsibilities as his mother. Even though he’s legally an adult, in many ways he is childlike because of the obstacles autism presents. His difficulties with language require that we often must speak for him, and his fine motor delays, coupled with hand tremors caused by anti-anxiety medications, hinder his ability to do many things independently. Nonetheless, I’m fortunate to have more time to do things for him and grateful that he’s generally quite cooperative in working with me to accomplish what we need to do on a daily basis. However, before I became his mother, I never realized all the things that mothers, especially special needs mothers, do for their children. Here is a list of some of my many roles as Alex’s mom:

1. Finder of Lost Objects––Alex misplaces something nearly every day, usually his iPad or pens for making lists. However, he’s quite predictable in where he leaves them, which makes my job fairly simple. In fact, I can usually lift a couch cushion and find a treasure trove of Bic pens that have fallen between the cushions where Alex was sitting. The most amusing task he gives me at least twice daily is, “Need to find Daddy.” Fortunately, Ed is quite predictable, too, and can generally be found in the family room downstairs.

2.  Scheduler––In this role, I am responsible for making sure that appointments with doctors, the dentist, and therapists are made regularly, and I keep track of the Chicago Cubs baseball schedule as well as the NASCAR schedule for Alex. I must always know whom the Cubs are playing, where the NASCAR race is that week, what time the game/race is on television, and what channel will be broadcasting the game/race. Over the years, I have discovered that Alex is like a good lawyer: he never asks a question he cannot answer himself. If I make a mistake in the information I give him, he will call me on it. Hence, I double check my information to ensure my credibility as his sports information source. In addition, I am also responsible for making sure that calendars and clocks are accurate, which is very important to Alex (probably so that he won’t miss a minute of a baseball game or NASCAR race). If the house timekeepers are not precise, Alex will let me know that we need to change them immediately.

3.  Health Management––This is a job Ed and I share, as we take turns being Alex’s pharmacist in administering his medications and acting as his personal dental hygienist. However, we do our tasks differently. For example, Ed counts Alex’s pills as he gives them, whereas I recite their names. Also, Ed makes brushing teeth into a fun game show activity, whereas I count off the number of seconds he’s brushed as his electric toothbrush beeps every thirty seconds. Despite our different methods, both of us are grateful that Alex is not only cooperative about these important tasks, but he also faithfully reminds us when it’s time to take his pills or brush his teeth.

4.  Personal Groomer––Another one of my roles is to make sure that Alex is clean and neat so that he makes a nice appearance. As his barber, I cut his hair and shave his face, and as his hairdresser, I shampoo, blow dry, and comb his hair. Fortunately, he likes being groomed, so he sits eerily still, almost mesmerized, as I do his hair. In addition, I give him manicures and pedicures, put lip balm on him several times a day at his request, make sure he uses deodorant every day, as well as finding and cleaning his eyeglasses throughout the day. Moreover, I’m also his laundress and valet who makes certain his clothes are clean and assists him with selecting and putting on those clean clothes daily.

5.  Personal Shopper––Since Alex can’t drive (a fact he reminds us whenever he’s upset about his lack of independence as an adult), he relies upon Ed and me to chauffeur him wherever he needs to go. However, he prefers to leave shopping to me, so I’m responsible for making sure that he never runs out of orange juice, note pads, and Epsom salt, among other things. While milk, eggs, and bread are snowstorm staples for most homes, orange juice, note pads, and Epsom salts are must haves at our house.

6.  Speech Therapist––Language doesn’t come easily for Alex, so we constantly encourage him to talk to us. Often, he uses pat (or perhaps pet) phrases that we enthusiastically reinforce. For example, we heartily agree when he reminds us several times a day that he “had a young voice in 1994” or that “It gets hot in Phoenix.” Also, I have to assure him repeatedly that I’m not the lady wearing the blue dress in the Claritin commercial, even though we look somewhat similar. Honestly, I’d like to be as young and slender as she is, and I like that he thinks she looks like me. Besides trying to develop conversations skills, we also work on his manners, constantly reminding him to use the magic words of “please, thank you, and you’re welcome.” Lately, if Alex really wants something, he will make sure we’re eager to serve him by telling us all three, “Please, thank you, and you’re welcome,” before even making the request. Clearly, he’s learning the power of being polite.

7.  Food Services­­––Even though Alex’s appetite is not what it used to be, making sure that he eats a healthy diet daily within the parameters of his gluten-free and dairy-free restrictions is crucial. Consequently, I act as his cook and waitress throughout the day. Since he wants to know the menu, I also announce the daily specials as a maître d would, even though he wants to eat the same things every day. Because his hand tremors make eating some foods nearly impossible, I must also literally spoon feed him to make sure he eats enough. In addition, he likes to be part of the food preparation process, so I give him jobs to do as my sous chef and have him set the table and help clean up afterwards, which he enjoys doing.

8. Developer of Faith––Of all my jobs as Alex’s mom, helping him develop his faith is my most fulfilling and important. Seeing Alex’s faith and trust in God grow over the years has been gratifying because I know that faith will help him deal with all he will need to cope with in life. At the end of every day, the reward for completing my various tasks as Alex’s personal assistant is the opportunity to say bedtime prayers with him. As we thank God together for all of His goodness and ask Him to bless those we love, I’m awed by the peacefulness and sweetness of the moment and grateful for Alex’s childlike faith that gives him a sense of security before he falls asleep. As a mother, I’m immensely thankful I have been able to share with Alex the same faith my mother instilled in me so that he, too, can face the future with hope, confident that God loves him even more than I do. On Mother’s Day and every day, I can think of no greater gift.

“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

Traveling Through the Dark

“Traveling through the dark, I found a deer…” William Stafford

Last Monday night, as Ed was coming home from taking sunset pictures at the Indiana Dunes, a deer suddenly ran in front of him on the dark highway. True to the saying, “like a deer caught in headlights,” the deer stopped in front of his car instead of continuing to run across the road. Fortunately, Ed was able to slow down enough that he didn’t hit the deer at fifty miles per hour. After doing some damage to the plastic pieces on the front of the car, the deer continued running on its way across the highway and into the woods.

Knowing that his encounter with the deer could have been much worse, Ed felt a brief sense of relief that was short-lived. Another car behind him apparently did not see his car stopped by the deer in time and rammed into the back of Ed’s car. Thankfully, neither Ed nor the other driver was hurt at all, but Ed’s car suffered more damage from the second hit. Using the cell phone I bought for him, despite his dislike of using the phone, keep charged for him, and insist that he carry just for circumstances like this, he called the police to file an accident report.

The police officers, like everyone we have dealt with in the aftermath of this accident, were exceptionally kind and helpful. When Ed came home in his drivable but damaged car and told me he’d been in an accident, my only concern was whether he had been hurt. After watching many medical shows over the years, I knew what questions to ask about potential symptoms of head injuries and whiplash and asked repeatedly if he should go to the emergency room to be checked. After reassuring me that he had come through the accident without a scratch, I thanked God for watching over him and keeping him safe.

The next day while Ed was at work, I handled phone calls from our insurance and the other driver’s insurance, taking careful notes so that I could relay the information to Ed. In addition, I spoke with the company that will provide a rental car while ours is being fixed as well as the body shop that will repair the car. Everyone I talked to was helpful and kind, beginning each conversation by showing concern, asking if Ed had been hurt in the accident. Once I told them that he was fine, they commented that as long as he was all right, nothing else mattered. I totally agreed with their assessment of priorities.

The following evening at dinner, I noticed a mark on Ed’s neck and immediately thought the seat belt from his car had either bruised or scraped him. After accusing him of minimizing an injury, Ed insisted that his neck was fine and went to the bathroom mirror to see where I was pointing. Apparently, my medical skills gained from television shows were lacking, as the “injury” I found was only a bit of chocolate from candy he’d been eating.

Not wanting to worry Alex, we have tried to keep our discussions about the accident minimal in front of him, but his acute hearing and fondness for eavesdropping made secrecy impossible. Not to mention, he overheard the assorted phone calls from the insurance companies in which we had to explain what had happened. As we told him about his dad’s car accident, Alex seemed to take the information seriously but calmly, especially since we reassured him that his dad was fine and that the car will be repaired.

With claims filed for insurance, estimates made of expenses, and parts being ordered to repair the car, now we just wait. After the initial flurry of concerns and details to be tended, Ed and I have viewed this experience in different ways. He’s frustrated that his car is damaged and will be in the shop for a week, but I’m thankful that he walked away from the accident totally uninjured. Moreover, I’ve reflected on how this accident is in some ways a metaphor for our life with autism. Like the deer, autism seemed to appear out of nowhere, impeding our path as we were traveling along through life. After facing autism head on, we have also encountered the second unexpected hit from behind in various ways: struggling to find professionals to help Alex, dealing with extreme anxiety and aggression, and working to heal his gastrointestinal issues. As if autism were not enough with its impact on language, motor, and social skills, the additional financial, mental health, and medical issues prove challenging to families like ours.

Nonetheless, just as the police officers and the employees of the insurance agencies, rental car company, and body shop have helped us in dealing with the aftermath of a car accident, therapists, doctors, researchers, and other parents have guided us in dealing with autism. While these experiences were new to us, others with more experience and expertise could help and guide us as to what we needed to do to move forward. Most importantly, we know that nothing comes as a surprise to God, who watches over us and guides us through every circumstance in life. While we don’t know what Alex’s future holds, we do know that God holds Alex’s future. Holding fast to our faith, we trust that God will guide us along paths we cannot see and help us move past obstacles, just as He always has, fulfilling the good plans He has promised.

“Thy word is a lamp unto my feet, and a light unto my path.” Psalm 119:105