Arsenic and Old Toothpaste

One advantage of having a child with autism in the Information Age is the ability for parents to access research easily and to compare notes with other parents in similar situations. Through online support groups, parents of children with autism can share ideas and brainstorm solutions. Last week, an online autism parent group had a discussion regarding tin. One of the mothers had her child tested for metal toxicity, which is common in autism, and discovered that her child has high levels of tin in his system. To prevent further exposure to this toxic metal, she wanted to know what might have caused her child to have tin poisoning.

Her surprise and concern mirrored my own responses when we discovered that Alex had heavy metal toxicity. Although I initially feared mercury poisoning from the preservative thimerosal found in vaccines when we had him tested as a child, his mercury levels were slightly elevated. However, he had the highest levels of arsenic in his system that his doctor had ever seen. Immediately, I began searching for the source of arsenic that may have poisoned Alex.

Some online searching led me to the likely source: chromium copper arsenate (CCA), an arsenic compound used a preservative for outdoor lumber until 2005. The backyard deck we built when Alex was a baby was made with CCA-treated lumber. At the time, we didn’t know that treated lumber contained arsenic. It’s quite likely that after crawling around on the chemically treated deck, he picked up the arsenic on his hands, and his hands likely found their way to his mouth. When we built a new deck, we were certain not to make the same mistake again and made sure the deck was built with lumber that did not contain arsenic. However, we had to address the arsenic already in Alex’s system, and oral chelation therapy with a sulfur-based compound successfully eliminated toxins.

In discussing possible sources of tin poisoning, one of the parents in the group explained that tin is in the air and soil, which makes avoiding it nearly impossible. Another parent offered a suggestion that I had never considered: toothpaste. She explained that stannous fluoride, present in some toothpastes, is a tin compound. Indeed, “stannous” means “of tin with a valence of two.” Immediately, I checked the toothpaste Alex uses regularly, the one recommended by his dentist and provided as a sample every time we have his teeth cleaned. That well-known brand of toothpaste, indeed, contains stannous fluoride.

This was not the first time I discovered that the toothpaste Alex was using contained an ingredient I would prefer he not have in his mouth. A few years ago, I found that the toothpaste he was using contained triclosan. In September 2016, the U.S. Food and Drug Administration ruled that so-called antibacterial soaps containing triclosan could no longer be on the market. [For more information about this ban, please click here.] The FDA determined that these products could not prove scientifically effective in preventing the spread of illness and infection. In addition, the FDA cited safety concerns, specifically bacterial resistance and hormonal effects, in its ban on triclosan. However, the agency permitted continued use of triclosan in hand sanitizer, products used in health care settings, and toothpaste. Why the FDA allowed a substance considered not effective in dealing with bacteria––as well as potentially harmful––to remain in toothpaste is beyond me. Nonetheless, I threw away Alex’s toothpaste containing triclosan.

On its website, the toothpaste company Colgate offers more information about types of fluoride in an article titled, “Stannous Fluoride Toothpaste: Pros, Cons, and Alternatives,” written by Jenny Green. [To read this article, please click here.] In this article, the author notes that the two most common forms of fluoride found in toothpaste are stannous fluoride and sodium fluoride. (I am aware that some people have issues with using fluoride of any kind and avoid it altogether.) Citing research from the Archives of Oral Biology, the author notes that stannous fluoride is most effective at reducing bacteria that forms plaque on teeth. However, stannous fluoride can leave stains on teeth and because it contains tin, can cause a metallic taste. By contrast, sodium fluoride does not leave stains, does not contain metal, tastes better, and can “provide an effective alternative.”

Consequently, I bought Alex a tube of the same toothpaste I use, one that contains sodium fluoride. Not only will he no longer be exposed to tin in his toothpaste twice a day, but I’m also hopeful that removing a metallic taste from his mouth may help improve his appetite. Perhaps his frequent complaint that foods taste bad may be because the stannous fluoride he’s been using has left a bad taste in his mouth. While I’m annoyed I didn’t figure out that stannous fluoride contains tin until a few days ago, I’m determined that Alex will no longer use toothpaste that contains that ingredient any more.

For many people, stannous fluoride probably causes no problems. However, those with autism who have trouble detoxifying heavy metals and other harmful substances should avoid chemicals that could impair their health. While one would think that the Food and Drug Administration would ensure the safety of common products, such as toothpaste, the continued presence of triclosan and stannous fluoride shows that consumers must always read labels and be aware of potentially dangerous chemicals. Parents of children with autism must be especially vigilant because our children are more susceptible to environmental toxins. Moreover, once those dangers are discovered, changes must be made to protect our children. After all, helping our children be as healthy as possible is one of our greatest responsibilities as parents.

“Don’t turn your back on wisdom, for she will protect you. Love her, and she will guard you.” Proverbs 4:6

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

More Than Words

Language impairment, one of the defining characteristics of autism, also proves to be one of the most frustrating aspects for those who have autism, according to a well-written recent article. [To read this article, please click here.] In “Communication: An Important Autism Life Skill,” published online July 29, 2018, in Psychology Today, Chantal Sicile-Kira notes that while sensory issues challenge adults with autism most, communication difficulties run a close second. As the author of acclaimed books on autism, namely Autism Spectrum Disorder and Autism Life Skills, as well as the mother of an adult son with autism, Chantal Sicile-Kira has devoted her life to her son and to sharing what she has learned about autism.

As she explains, children with autism often have motor skill impairments affecting their necks and mouths that make physical production of speech quite difficult. Instead of using words to speak, they may resort to attention-seeking behaviors, such as screaming. Because these behaviors are considered socially inappropriate, especially in older children and adults, the author emphasizes the importance of teaching nonverbal children with autism alternative methods of communication, such as typing or pointing to letters. Indeed, her nonverbal son, Jeremy, has benefitted from learning alternative means to communicate and has even co-authored a book with his mother, A Full Life with Autism. Nonetheless, he admits, “The hardest part of autism is not being able to talk.”

Even for those with autism who can speak, the author notes, communication can be difficult. Specifically, she describes the “hidden curriculum”––social skills that are not specifically taught but learned by following others’ behavior. These include eye contact, speaking at an appropriate volume, and reading people’s body language. Even knowing how to respond appropriately is important, as she cites the example of a teen girl with autism whose peers found her rude because she didn’t know how to accept compliments. Clearly, teaching language to children with autism requires thinking outside the box.

While we are blessed that Alex can speak and express his thoughts and feelings, speech has always been one of his biggest struggles. In addition to providing speech therapy for him, we also used his strengths to help him overcome his weak areas. For example, his precocious reading skills enabled him to connect written words to objects and spoken words. Using Post-it notes, I labeled objects in the house so that he would connect the objects with their written and spoken names. In addition, we used his love of books to develop his ability to connect written and spoken language by reading aloud to him daily. His phenomenal ability to spell words correctly, even as a pre-schooler, proves quite beneficial because he can spell aloud words when we can’t understand what he is trying to tell us. To help him with this task when he was younger, we bought him a Franklin Spelling Ace handheld electronic dictionary that allowed him to type words on a screen that he could show us and communicate what he wanted to say. Certainly, the advancements in technology in the past two decades now allow children with autism access to smart phones and electronic tablets that can enhance their ability to communicate with others.

Even now in his mid-twenties, Alex is still developing his speech skills, expanding his vocabulary by reading the dictionary and learning social language by eavesdropping on conversations. Moreover, his behavioral therapist has done an excellent job of teaching him the “hidden curriculum” that is often overlooked. She has worked with him on how to give and accept compliments, how to ask appropriate questions, and how to develop reciprocal conversation by asking and answering questions and sharing ideas and opinions on a given topic. While we still have to cue him on these social language skills, he is making good progress and knows the value of not appearing rude. Clearly, her lessons on the value of eye contact have made an impression on Alex because lately he has been leaning down to my eye level (since he’s several inches taller than I am) when he wants to tell me something he finds interesting. Being able to share his thoughts and feelings obviously delights Alex, and we are delighted not only that he can use language to share ideas with us but also that he wants to engage us in conversation.

Yesterday, I ran across a video of Helen Keller on You Tube entitled, “Helen Keller Speaks Out.” After an illness that robbed her of her sight and hearing at a very young age, she was able to learn to communicate with others by using touch to finger spell and read lips. Because her dedicated teacher, Annie Sullivan, knew the importance of teaching her language, she used unconventional methods to meet Helen’s needs. Despite debilitating disabilities, Helen Keller became an author and a public speaker. Even though she inspired many with her great accomplishments, she admits, “It is not blindness or deafness that brings me my darkest hours. It is the acute disappointment in not being able to speak normally.” While she may have been disappointed in her speech, I was amazed how well she could speak in this video. She goes to explain her frustration, “Longingly I feel how much more good I may have done, if I had only acquired normal human speech. But out of this sorrowful experience I understand more clearly all human striving, thwarted ambitions, and infinite capacity of hope.” Perhaps she underestimated her ability to communicate and the impact her words and her life have made upon others. Nonetheless, she emphasizes the importance of giving people with disabilities a voice, whether through sign language, an interpreter, or modern technology to allow a nonverbal person to communicate.

In the examples of Jeremy Sicile-Kira and Helen Keller, we clearly see the need to find ways to help people with disabilities communicate with others. Even with those whose language skills are less impaired, like Alex, we need to teach all aspects of communication to help them interact positively with others. Teaching those who are differently abled requires creativity, patience, and tenacity. However, knowing that those special people have something valuable to say truly gives us that “infinite capacity of hope.”

“The lame will leap like a deer, and those who cannot speak will sing for joy! Springs will gush forth in the wilderness, and streams will water the wasteland.” Isaiah 35:6

The Eyes Have It

On Monday, we took Alex for his annual eye exam. As with all appointments related to his health, Alex was looking forward to his visit to the optometrist, especially because he thinks she has a pleasant voice. Since we have been going to this eye clinic for several years, we know that things typically run smoothly there, which is one of the main reasons we take Alex there. However, the normally calm office seemed a bit “chaotic,” to quote one of the staff, that day.

When we arrived, a new staff member handed me forms to fill out. The first one, part of HIPAA compliance for privacy of information, would allow Alex to give Ed and me permission to access his medical information. Since Ed and I are Alex’s legal health care representatives and have medical power of attorney, we already have this right. As I tried to explain this to the receptionist, she seemed confused and not completely convinced until another staff member told her that I was correct and the form did not need to be completed.

After that, she pulled out a colorful photograph of a human eye and started a sales pitch about the wonderful diagnostic photos their office could take of the inside of Alex’s eyes. Having had these same photographs taken of my own eyes, I knew that Alex could neither sit still long enough to have this done, nor would he like the overwhelming sensation of having a very bright flash of light in his eyes. Consequently, I told her that he could not have that part of the exam done. Undaunted, she continued her spiel, explaining that he would not need to have his eyes dilated for that test. Undaunted, I explained that Alex has autism and would not be able to do that test. Fortunately, the other woman at the desk again intervened for me, telling the receptionist, “His mom is right. She knows what he can and can’t do. He won’t have the photograph taken.” As I nodded appreciatively toward her, the receptionist seemed a bit disappointed as she put her visual aid away.

When we went for Alex’s preliminary testing with the optometry tech, Alex did a great job of cooperating and following her directions. She seemed to understand that he could not do the photograph, nor the peripheral vision test that requires more dexterity than he possesses, using a hand clicker when images appear on a screen. We appreciated her kindness toward him, especially since she praised him enthusiastically about how well he had done.

After we went back to the examination room, she and I went over Alex’s medication changes while Ed chatted with Alex, who was patiently waiting. She asked me if they could dilate his eyes, and I immediately said no a bit sharply, and then remembered my manners, adding, “Please don’t.” For all the years Alex has gone to the eye doctor, we have managed to avoid testing and dilating that might upset him and make him unwilling to go to future eye exams. Since he has no real issues other than being slightly nearsighted, we didn’t need to risk upsetting him with unnecessary procedures. She seemed to understand, and then she began the preliminary vision exam.

While wearing his glasses, Alex began to read the letters off the screen. Even though I was bothered that the letters were tilted at a slight angle because the projector was not level, Alex didn’t seem annoyed by this. For the first line of letters, he recited letters that weren’t even close to what was on the screen. When I asked him if he could see any of them clearly, he admitted that he couldn’t. I told him that if he couldn’t see something, he could just tell us that and didn’t have to make up answers. That seemed to reassure him. For the next line, which was a little larger font, he was able to identify some letters but confused a T for and I and an F for an E. At least he was getting closer. By the time he saw the third line, he was able to read all of them easily and correctly. When this test was repeated on his other eye, the process was the same, except this time, he told us that he couldn’t read any of the smallest letters, heeding my advice.

When the eye doctor came in to examine Alex’s eyes more closely, he continued to be calm and cooperative, answering her questions clearly and admitting when he was unable to read certain letters. After various tests, she concluded that his eyes are healthy, but his prescription had changed slightly. When Alex was retested with the stronger lenses, he was able to read all of the small-sized font letters easily instead of just making up letters or admitting that he couldn’t see them. That confirmed that he would need new glasses.

As we went to select frames for the new glasses, the entire staff seemed to be engaged in learning something at a computer, so we browsed the rather meager selection of Flexon frames. Because the Flexon brand is quite durable and bends rather than breaks, we have always chosen this brand for Alex, even though he takes excellent care of his glasses. By the time the optician came over to help us, I was about ready to ask for his prescription so that we could get glasses somewhere else. When I asked her if they had any other choices, she seemed a bit unnerved and admitted that she doesn’t usually work in this office. The woman at the desk who had been helpful when we arrived immediately told us that there were more frames in the back and that she would get them for us. Soon, she returned with two boxes of frames, and we quickly found a few we liked. Because Alex isn’t terribly picky about the appearance of his glasses, Ed and I agreed on a pair similar to the one he already has.

Next, we had to order the lenses, which we thought would be simple since it had only been two or three years since he last ordered glasses. However, the optician told us that they get rid of the electronic files after a couple of years, so we weren’t sure whether that information was available or not. After rolling my eyes at Ed, trying to contain my growing annoyance, the optician was able to locate the previous information, saving us time.

Thinking we were now home free, another staff member informed us that they couldn’t take a credit card payment because they were switching to a new system. She seemed a bit overwhelmed until I assured her that after we went home, I would come back with my checkbook and pay with a check, figuring that was the simplest solution. Despite all the unexpected issues that had arisen during this visit, Alex seemed completely unfazed. As I could feel my frustration rising, I knew that Alex was handling these small annoyances correctly by smiling and being polite and patient. If he could be content, so could I.

After Ed and I took Alex home, we praised him for being pleasant and cooperative at the eye doctor. Then, I returned to the eye clinic to pay for Alex’s exam and glasses. The kind woman who had been supportive apologized to me for the “chaotic” atmosphere and hoped that Alex hadn’t been upset by anything that had happened. I thanked her for her help and assured her that he was fine. She commented that Alex always does well, adding that the eye doctor and tech had also remarked on what a great job he had done. Despite the various minor issues, Alex had successfully completed his annual eye exam. Perhaps more importantly, he reminded me through his calm demeanor not to be upset by little things. Instead of focusing on the paperwork issues, he was interacting with the staff in a positive way, making a favorable impression. Needless to say, we’re awfully proud of the young man we have raised who sees––even without his glasses––what’s truly important in life.

“Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” I Corinthians 13:12