The Gift of Waiting

“Let all that I am wait quietly before God, for my hope is in Him.” Psalm 62:5

Although I’m not by nature a patient person, raising a child who does things on his own timetable has made me learn the value of waiting. Last summer, we kept waiting for Alex to get over a bad case of thrush, a yeast infection that made his mouth and throat sore and required multiple doses of antifungal medication and repeated visits to his primary care doctor. One of the side effects of the thrush was that food tasted bad to him, and he lost his normally healthy and varied appetite. I was certain that once the thrush went away, Alex would regain his enjoyment of eating a variety of foods, but his limited appetite continued long after his mouth had healed.

During one of Alex’s appointments last summer, his doctor suggested that we could take him to a speech therapist to work on the food aversion issue. Even though we had the referral paperwork to see a speech therapist conveniently located just five minutes from our home, I didn’t feel a pressing need to make an appointment. Convinced that Alex would just wake up one day and decide to start eating anything and everything again, I felt strongly that we simply needed to wait. After all, the thrush had gone away in time, and we thought the lack of appetite would soon follow. In the meantime, I kept praying that God would give me a sign when the time was right to take Alex to the speech therapist.

About the time we would have taken Alex to the speech therapist, he developed anxiety about going places, worried that the weather was too cold, too windy, too rainy, and/or too snowy. Even places he enjoyed going were off limits because he had a fear of going out into the elements. While we were able to get him to necessary appointments, such as the doctor, he required quite a bit of convincing to get him out the door. Consequently, this was no time for starting something new, and the speech therapy referral sat in a file folder on my desk.

Fortunately, this summer, Alex seems to have conquered his fears of going places, and he has resumed the enjoyment of getting out and about in the community. Unfortunately, his appetite still has not resumed its former enjoyment of foods after nearly a year of being over the bout of thrush. A few weeks ago at an appointment with the nurse practitioner who oversees Alex’s medications, she asked us if his appetite was back to normal, and I had to tell her that his eating habits were still off but that he was managing to maintain his weight. At that point, I suddenly felt the sign I’d asked God to give me and knew that we needed to take him to the speech therapist.

When I spoke to the speech therapist on the phone, I was immediately struck by her warmth and kindness; in talking with her, I felt somehow as if I’d known her for years. She understood my concerns about Alex’s appetite and why we had waited nearly a year to make an appointment with her, due to his ongoing thrush and anxiety about going places. As she sympathetically listened, she also expressed a desire to help Alex, and we agreed to set up an appointment. However, she explained that she’d only recently started working in our local office and admitted that she didn’t know the phone number for me to call. After quickly checking, she relayed the number I needed to call to make an appointment and told me she was looking forward to seeing us. After talking with her, I was convinced we were doing the right thing to take Alex to her, and I now knew why I had waited for months to make the appointment: God had chosen her to work with Alex, and we had to wait until she was available.

A few days later, she called me again with some more questions about Alex, specifically about what kinds of things he likes to eat and what he can eat on his gluten-free and dairy-free diet. As she explained what she planned to do for his evaluation, she asked me to bring some foods that he can eat on his diet so that she could observe how he chews and swallows. Again, I was reassured by her friendly and kind nature, and appreciated her concerns that Alex be comfortable when he came to see her.

On the morning of the appointment, Alex seemed calm and eager to meet her, even getting up earlier than usual. As I filled out paperwork, he was happily reading the Forbes and Bloomberg finance magazines in the waiting room. (Clearly, God was reminding us that Alex belonged there!) When we met the speech therapist, she was just as pleasant in person as she was on the telephone, telling us how happy she was to meet us. Noticing Alex’s Chicago Cubs shirt, she excitedly told him how she’s a big Cubs fan, too; and his favorite player, Anthony Rizzo, is hers, as well. She even told him that her little boy’s middle name is Anthony, which made Alex smile. As they chatted, they also discovered they shared a love of shrimp and country singer Alan Jackson’s music. I think she was amazed by their similar tastes, saying aloud what I was thinking: “It was meant to be!”

As she examined Alex’s mouth and throat and observed him drinking, chewing, and swallowing, she did everything possible to make him feel comfortable and praising him all along the way. We were pleased that he was cooperative and answered her questions, and he responded to her warm personality, smiling throughout the appointment. In addition, we were relieved that she found nothing amiss with his ability to drink, chew, and swallow, and she believes that his food aversion is sensory in nature. She commented that the thrush made food taste bad to him, and he has continued negative associations with food. In addition, she told us that she had been thinking a lot about Alex ever since she and I had talked on the phone the first time and had trouble getting him off her mind. As a result, she had been doing research and trying to figure out the best ways to help him. Again, I felt that God had brought us to her specifically because she was clearly dedicated to helping Alex.

After describing her plan for helping Alex by gradually introducing new textures and flavors of foods, we felt confident that we had brought him to the right person. She asked Alex if he’d like to come see her once a week, and he replied without hesitation, “Yes!” which confirmed our belief that we had found someone who can help him. In addition, her schedule of availability on Mondays and Wednesdays matched ours, once again convincing me God intended specifically for her to work with Alex.

Although waiting to take Alex to the speech therapist may have seemed like procrastination on my part, I know that circumstances and my hesitation were directed by God whose plans are far better than mine. While I was waiting for the right time, God was behind the scenes, moving the right person into place who genuinely wants to help Alex get better. As we look forward to working with her, I truly believe that waiting for the right time and the right person was the right thing to do. Moreover, I believe that she will help Alex regain his appetite because God sent her to us. As Alex often says, “Wait and see!”

“Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.” Psalm 27:14

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

Wasted Worry

 

In May, Alex mysteriously changed his eating habits. Because he has always had a good appetite and a willingness to eat almost anything, we became concerned when he seemed to lose interest in eating foods he had previously loved. Even more concerning was the weight loss that accompanied this change of eating habits. Consequently, we took him to the doctor, who diagnosed him with thrush, yeast overgrowth in his mouth and throat that seems to plague Alex at regular intervals. Since his mouth and throat were sore, apparently only cool and smooth foods, such as coconut milk yogurt, Rice Dream ice cream, applesauce, and pureed fruit appealed to him. Moreover, he told us that some foods he had previously liked now tasted bad, which apparently was a side effect of the thrush.

After prescribing a week of the anti-fungal medication Diflucan, the doctor told us that if Alex’s appetite continued to be affected, he might want to do an abdominal CT scan to determine whether he may be having gall bladder issues. In addition, he wanted to see him again in a few weeks to monitor his weight and see if the thrush improved. The medication did help the thrush, but his appetite was still not back to normal. Fortunately, by encouraging Alex to eat foods that did appeal to him, he was able to gain back some of the weight he had lost.

When we returned to the doctor in June, he was pleased that Alex was doing better and gaining weight. Since Alex was improving, he didn’t think the CT scan was necessary, but he indicated that if Alex continued to have thrush outbreaks, he may want to refer us to an ear-nose-throat specialist who could better view what was going on in Alex’s upper digestive tract. While I was not thrilled with the possibility of Alex needing a scope of his upper GI tract, I trusted the doctor knew what was best for him and hoped that this test would not be necessary. In the meantime, he prescribed another round of Diflucan to address the residual thrush and wanted us to return in three months to check Alex’s progress.

Over the summer, Alex seemed to be getting better, as the signs of thrush improved. When Alex has thrush, his anxiety and OCD increase, and he also has acne breakouts and terrible dandruff. Fortunately, all of these symptoms subsided, and his appetite, while not back to normal, improved. Because he was doing fairly well, his psychiatric nurse practitioner took him off one anti-anxiety medication and reduced another. He adapted to these medication changes overall quite well, which was encouraging. However, he seemed to have some increased sensory issues, such as covering his ears when he heard loud noises. Perhaps his eating habits were affected, as well, with intensified tastes, smells, textures, and even sounds of foods. While we had seen some improvement with his willingness to eat a greater variety of foods, we saw a setback recently where he reverted to eating only the cool and smooth foods he preferred in May.

Knowing that we were taking him back to the doctor last week, I began to panic that the doctor would want more tests run on Alex. In case his eating habits were more mental than physical, I decided to try a new method: offering him a reward for eating. All summer long, we have been low key about his eating habits, not wanting him to feel anxious and not putting pressure on him. However, in trying to spare him medical procedures, I was willing to push him a bit to see if he might eat more. Last week, I told him that if he would eat his dinner, he could get an Italian ice at Fazoli’s for dessert.

The first two nights, the plan worked well, as he ate dinner and earned his reward. The third night, however, he became agitated trying to comply so that he could get the dessert he really wanted. The next night, he began shaking before dinner ever started, fretting about the task of eating, and I knew we needed to abandon this plan. Instead of pushing him to eat a variety of foods, I fixed him foods I knew he could eat, and he was much calmer. Apparently, his eating habits were not just a matter of stubbornness on his part, and I felt bad about pushing him to eat, even if I had his best interests at heart.

In the days before we took him back to the doctor on Wednesday, I fretted about what might be ahead of us, just as Alex had fretted about eating a few days earlier. As I worried about possible medical procedures Alex might need, or even worse, what terrible illnesses might be responsible for his lack of appetite, I knew I needed to pray and find peace. Whatever God had planned, He would see us through, just as He always has.

When Alex went to the doctor on Wednesday, the doctor was pleased with Alex’s weight gain and fortunately did not feel the need to run any tests. Unfortunately, he diagnosed Alex with another case of thrush, which would explain the decline in his appetite that had been improving a few weeks ago. The doctor also thought that the decrease in anti-anxiety medications could cause sensory issues that would impact his appetite, as well. He prescribed ten days of Diflucan followed by weekly doses to keep the thrush at bay and told us to call him in two weeks and let him know how Alex is doing.

Fortunately, this case of thrush seems much milder than the ones Alex had earlier, as his symptoms are less intense and don’t seem to be bothering him too much. Thankfully, we are already seeing improvements in just the few days Alex has been on the anti-fungal medication. We are also pleased with how the doctor is handling Alex and have confidence that he is doing what is best and genuinely wants to help Alex get well. While we hope and pray that Alex’s appetite will return to normal soon and that the thrush will disappear permanently, we know that God has a plan for Alex’s healing and that we need not worry about the details. Instead, we just need to wait and to trust that in the end everything will be all right.

“Don’t worry about anything; instead pray about everything. Tell God what you need and thank Him for all He has done.” Philippians 4:6

Picky Eater

 

For nearly four months now, Alex has been limiting himself to what I have dubbed “the cool and smooth diet.” Back in May, he had a mild virus that diminished his normally healthy appetite, and then a strong bout of thrush, yeast overgrowth in his digestive system that lasted weeks, made his mouth and throat sore, causing him not to want to eat. After two doctor visits and three weeks of antifungal medication, the yeast seems to be tamed, but Alex still has not returned to his normal eating habits. Instead of eating a wide range of foods that he usually enjoys, he prefers coconut milk, Rice Dream non-dairy “ice cream,” nondairy yogurt, applesauce, and pureed fruit. Along with the cold and smooth diet, he takes nutritional vitamin, mineral, and protein supplements to ensure he gets what he might be missing in this limited diet.

Although nearly seventy percent of children and adults with autism are often dubbed picky eaters, Alex has always had a good appetite and been willing to try a variety of foods. While some children with autism limit themselves to the “white diet” consisting of bread, crackers, pasta, and french fries (often because their bodies crave the glutens in them which may be bad for their digestive systems), Alex would eat a wide range of fruits, vegetables, meats, and seafood, as well as gluten-free and dairy-free carbohydrates. We considered ourselves fortunate that the only three foods he did not like as a child were broccoli, mashed potatoes, and popcorn. As he matured, he even decided that he liked broccoli and mashed potatoes, leaving only popcorn as the food he detests because it’s “too salty” (although I suspect its texture is to blame, as well).

In an article entitled “The Picky Eater” found on the Autism Research Institute’s website, Kelly Dorfman addresses four possible causes for picky eating often found in autism and other developmental delays. [To read this article, please click here.] First, she describes sensory issues and poor oral motor skills that may make eating difficult. For example, for those with sensory issues, smells, tastes, and textures of certain foods may be overwhelming. In addition, poor oral motor skills may cause children to choke or gag, making eating challenging for them. To overcome these problems, she recommends reducing anxiety, using an electric toothbrush to desensitize the mouth, and strengthening oral skills by using a straw to drink, all of which we have done with Alex over the years.

Next, she explains the role nutritional deficiencies play in picky eating. Essentially, picky eating can lead to malnutrition, which can lead to even greater reduction of appetite and even more nutritional deficiencies, creating a vicious cycle. To remedy this, she recommends giving vitamin and mineral supplements to address any nutritional needs not being provided by a limited diet. From the time he was little, Alex has always taken vitamin and mineral supplements, and we are fortunate that he has been willing to swallow pills, making giving him these supplements easier.

Another issue addressed in this article is the role of digestive problems that often plague people with autism. She explains that digestive issues can cause a child to feel uncomfortable and make them want to avoid eating. Consequently, she recommends diagnosing any digestive problems through a Comprehensive Digestive Stool Analysis and treating inflammation with proper supplements. When Alex was younger, we had this test run and discovered that he had issues with yeast overgrowth in his digestive tract, which has plagued him over the years. Whenever he has yeast flares, we treat them promptly with antifungals, but we must always be on the lookout for the symptoms that show his system is not in balance. Also, we have repeatedly asked him if his mouth, throat, or tummy are bothering him, and he insists that he feels fine.

Finally, she explains the role of medication side effects in appetite. For example, stimulant medications often given for ADHD can diminish appetite. If the medications are necessary, parents may need to be creative about getting their children to eat, providing the most nutritional meals at breakfast and afterschool when the medication has less impact on the appetite.

Although Alex is not on stimulants, I do suspect that medication may be playing a role in his recent changing eating habits. Because he has been doing so well in managing anxiety, one of his medication levels was lowered significantly, and he was weaned off another medication completely. While he has done quite well with these medication changes, remaining calm and content, I think the reduction of depressant medications in his nervous system could mean that the nerves in his mouth are reawakening. Perhaps textures, tastes, and smells are a bit overwhelming to him, so he is choosing soothing foods, hence ‘the cool and smooth diet” he’s adopted the past few months.

Moreover, I have noticed that he has also become somewhat sensitive to sounds, something he had overcome many years ago through auditory training at home with the EASe listening program. He prefers that the television be turned to a lower volume lately, and we have seen him cover his ears at times when noises bother him. Perhaps the sound of chewing is much louder to him than previously, and he is choosing foods that make no noise when he eats them. A recent trip to the dentist where his teeth were checked and found to be healthy and cavity-free reassured us that dental pain is not behind his current preferences for smoothies and smooth foods. I think that he is avoiding noisy foods right now that bother him.

While Alex’s changes in appetite have concerned us a bit, he seems healthy and happy, and he is maintaining his weight, despite changes in his eating habits. I really believe that increased sensitivity first triggered by thrush and then continued with medication changes that made him more aware of textures, tastes, and smells as his nervous system became more alert, have been responsible for his new eating habits. In addition, we know that Alex is very intuitive about what his body needs, and his wanting to eat kiwi, strawberries, bananas, peaches, and apricots daily instead of occasionally may be because he needs the nutrients in those specific fruits. He will see his primary care doctor again in a few weeks, and we will see what his opinion is regarding Alex’s current eating habits.

In the meantime, we keep offering Alex other foods we know he has liked in the past, hoping that he may be willing to eat them again. In addition, I try to make eating fun for him, offering him a plate of his current favorite foods I’ve dubbed—in honor of one of his favorite television game shows—“The Wheel of Luncheon,” which makes him grin and cooperate with eating, even when he thinks he’s not hungry. Most of all, we pray that God is restoring Alex’s health and guiding us to do whatever we need to do to help him be healthy and happy. Moreover, we know, despite our concerns, that this phase, like so many we have seen over the years, will eventually fade, and Alex will be fine.

“The Lord will accomplish what concerns me; Your lovingkindness, O Lord, is everlasting; Do not forsake the works of Your hands.” Psalm 138:8