Kind Words in an Unkind World

 

“Maybe it’s the movies, maybe it’s the books.

Maybe it’s the government and all the other crooks.

Maybe it’s the drugs, maybe it’s the parents.

Maybe it’s the gangs or the colors that we’re wearin'.

Maybe it’s the high schools, maybe it’s the teachers.

Tattoos, pipe bombs underneath the bleachers.

Maybe it’s the music, maybe it’s the crack.

Maybe it’s the Bible, or could it be the lack?

Come on people now.

Smile on your brother.

Everybody get together.

Try to love one another right now.”

“Right Now” by Cheryl Wheeler and Chet Powers

In a recent speech on vaccines and autism at Duke University, vaccine scientist and patent holder Dr. Peter Hotez made a rather bold and vindictive statement regarding organizations that question the safety and effectiveness of vaccines. Describing these groups, he is quoted as saying that they “camouflage themselves as a political group, but I call them for what they really are: a hate group. They are a hate group that hates their family and hates their children.”

Since many parents of children with autism believe that vaccines played a harmful role in our children’s health, he has falsely accused us of hating our children. Clearly, he believes vaccines play no role in autism, as he has written a book about his own daughter who has autism: Vaccines Did Not Cause Rachel’s Autism. Certainly, he is entitled to his opinions regarding the cause of autism in his own child, but casting aspersions on other parents is not necessary.

One of the problems in dealing with the autism crisis is the strong division between the factions who each firmly believe they know the true cause. Moreover, those who believe that vaccines play no role in autism often are dismissive of those who have witnessed first-hand vaccine reactions in their children and patients. Until a definitive cause (or causes) can be established, autism researchers need to work together to find potential triggers of the disorder so that autism can be prevented and cured.

Adding to the confusion surrounding how best to treat autism is the concept of “neurodiversity” in which high functioning people with autism tout the virtues of autism and insist that parents of children with autism should not try to cure them because they are fine the way they are. However, many parents recognize that our children have medical issues, such as seizures, allergies, and gut dysbiosis, that must be addressed. In trying to make our children healthy, parents are again unfairly made into villains who despise our children.

Considering the current climate of hatefulness in the mainstream media and social media, where people feel free to call names and demean anyone who does not share their views, this schism in the autism community is not surprising. The mentality of “Us vs. Them” pervades our society, and it’s easier to assign blame and make nasty remarks than to try and see the other position. Nonetheless, this divisiveness––whatever the controversial issue discussed––does nothing to solve the problems of our society. Until everyone is willing to listen respectfully to others and try to work together, not only will conflicts continue, but also societal issues will remain that could be resolved with cooperative efforts.

Last week, as I eavesdropped on Alex’s behavioral therapy session, his therapist was explaining to him the importance of keeping certain thoughts and comments to himself. With autism, social skills often must be taught, but this lesson seems to have value for everyone. As she explained that some words could be hurtful to people, Alex seemed to grasp the old adage, “If you don’t have something nice to say, don’t say anything at all.” Their conversation reminded me of a poster I had hanging in the middle school classroom where I taught for many years that advised, “Is it true? Is it kind? Is it necessary? If the answer to any of these questions is no, then keep it to yourself.” If Alex with his autism-impaired social skills and my middle school students could comprehend the concept of using restraint in making unkind remarks, adults should be able to do the same. Certainly, we should try to keep our cruel comments to ourselves to avoid hurting others, especially in this negative social climate.

A few days ago, I stopped by the pharmacy to pick up a prescription. As I was chatting with the pharmacist, I heard another pharmacist ask me if I was Alex’s mom. When I looked over, I recognized her as the pharmacist who had been especially helpful in December when we were having trouble getting one of Alex’s medications. [I wrote about this incident in my post “All Is Calm; All is Bright” on December 24, 2017.] Because she had sympathetically listened to my concerns and diligently worked to solve the problem by tracking down the medication, I had written her a thank you note expressing my gratitude for her kindness as well as her time and effort to help me.

A little surprised that she recognized me, I told her that I was Alex’s mom and remembered her from our conversation several weeks ago. She explained that she appreciated my note, which she said had “made her cry because it was so sweet.” She went on to tell me that she has saved the note and pulls it out anytime she is having a bad day. Explaining that pharmacists often take verbal abuse from customers, she appreciated my kind words. Of course, I was pleased that my simple note had meant so much to her, but I was also reminded of the power of words and how we can bless or curse others with them.

For those like Dr. Hotez and the neurodiversity movement who mistakenly believe that parents like me “hate” our children, I can assure you that I love my son unconditionally and will move heaven and earth to make sure he reaches his full potential. With the help of God, therapists, doctors, and pharmacists who care about Alex’s well-being, Ed and I will continue working to restore Alex’s health so that he can enjoy life to the fullest. Moreover, we will strive to teach him by example the importance of kindness so others can see the pure heart and sweet spirit God has given him.

“Kind words are like honey––sweet to the soul and healthy for the body.” Proverbs 16:24

Dentist Appointment

 

Last week, we took Alex to the dentist for his regular six-month cleaning and check-up appointment. Although he usually likes going to the dentist, his recent anxiety about going places had us concerned how he might react this time. Unlike some people who fear going to the dentist, Alex has had good experiences through the years and actually looks forward to his dental visits. The dental hygienist who has cleaned his teeth the past few years is especially sweet and patient with him, and her encouragement and praise make him eager to cooperate with her.

As with all of his appointments, I am careful to schedule a time that works best for Alex. For some doctors, we schedule Alex’s appointments first thing in the morning to avoid having to wait, which is more common in the afternoon. We try to avoid times when he might miss his beloved game shows, The Price Is Right or Jeopardy, and we avoid appointments that might overlap meal times. We also need to schedule around his regular behavioral and music therapy sessions because he doesn’t want to miss them. Working around Alex’s sacred schedule allows small windows of times in the morning and afternoon, but we manage to keep him happy.

For his dentist appointment, he didn’t have to sit in the waiting room but a few minutes before his dental hygienist came to greet him. Immediately, he happily jumped up and followed her back to the room where his teeth would be cleaned and checked—so far, so good. (We were even thrilled that he got into and out of our car without being coaxed.) Once he was seated in the dentist’s chair, his hygienist began putting on the paper bib to protect his clothes as she cleaned his teeth. She warned him that the metal chain that holds the bib might be a little cold on the back of his neck. As soon as he felt the chain against his neck, he decided it was too cold and decided he wanted nothing to do with the bib, pulling it off the chain and handing it to me. I assured him that he didn’t have to wear the bib and assured her that his shirt could be washed if anything spilled on it.

While the hygienist was preparing to clean Alex’s teeth, she chatted with him and tried to make sure he was comfortable, even asking if the light bothered him (probably knowing that the bib did), but he told her the light was fine. However, he was a little shaky, and she gently patted him on the shoulder and asked him if he was okay. Calmly, he admitted he was a little nervous. While Alex used to utilize a series of calm down skills, he now prefers only two options when he’s anxious: sit quietly or talk about his concerns. Consequently, I asked him if he wanted to talk or be quiet. He said he wanted to sit quietly and needed two minutes to calm down. Despite his nerves, he seemed to be in good control of his emotions.

Knowing that Alex literally meant he needed exactly two minutes, I figured this would give his hygienist time to note his medication reductions on his chart, so I gave her a copy of his updated medication dosages. Also, I asked her if she could put on the country music cable channel on the television after asking Alex if he would like some music. Clearly, Alex was regaining his composure in that short amount of time, as he stopped shaking and he visibly relaxed, even starting to sing along softly to the music. At the end of the two minutes, he announced that he was ready to have his teeth cleaned. He knew.

During the cleaning, Alex was calm and cooperative, answering any questions she asked him. Concerned for his comfort and attentive to his needs, she told him each step of the process and gave him choices to make him feel in control of the situation. For example, she asked him if he wanted her to spray his teeth with water or to drink from a cup himself. Usually, he doesn’t mind the water hose and suction, but he asked for a cup of water to rinse instead. Because of his sensory defensiveness, we always have to coax him to open his mouth wider, but he was cooperative, and she was able to clean his teeth successfully. Fortunately, Alex’s good daily dental hygiene habit of faithfully brushing his teeth twice a day with a sonic electric toothbrush pays off in that he had very little plaque that needed to be removed. When she was done, she enthusiastically praised him for doing such a great job. I think she was especially impressed––as was I––that he pulled himself together so nicely even though he started the session with some trepidation.

As we waited for the dentist to come and check Alex’s teeth, his hygienist asked him if he had any questions for her. He immediately asked her if he had any cavities. She told him that she didn’t see any, but the dentist would check that for him. While the dentist checked Alex’s teeth, his hygienist sang Alex’s praises, telling what a good job he did cleaning his teeth daily and how well he had cooperated as she cleaned his teeth. This seemed to make Alex (and certainly his mother) proud. After the dentist examined Alex’s teeth, he stated that everything looked good, there were no cavities, and he would see Alex again in August for his next six-month check-up.

Despite any fears Alex had about going to the dentist, or for that matter, any fears we had about taking him to the dentist, everything went remarkably smoothly. Even though he was a bit anxious, we were proud of the way he handled himself, never getting upset, calmly admitting his nervousness, and quickly calming himself so that he could do what needed to be done. Needless to say, his behavioral therapist, who has taught him many ways to cope with anxiety, was delighted to hear how well he had dealt with his nerves at the dentist. Of course, we were not only pleased with how well Alex coped at the dentist, but also with getting a good report that his teeth are healthy. Once again, we find ourselves grateful to God for the progress Alex continues to make in dealing with anxiety and for the kindhearted people who work with Alex and bring out the best in him. Most of all, we are thankful for Alex’s faith in God that helps him fight his fears, knowing that God watches over him and brings him the calm he needs whenever life overwhelms him.

“For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

How Learning Another Language May Help Children with Autism

 

One of the most common characteristics of autism is impaired communication. Specifically, children with autism often have delayed language development, and those who do speak may do so in a repetitive manner, asking the same questions over and over or echoing words and phrases they have heard before, such as lines from television shows. In addition, even some adults with autism have trouble making conversation and tend to stick to topics that interest them; they may have difficulty with the concept of give and take that is needed for social language interaction.

As problematic as acquiring language seems to be for many with autism, one would think that trying to learn another language might be a futile effort. However, a recent study indicates that learning a second language proves beneficial to children with autism. Last month on January 23, 2018, Medical News Today published an article online entitled “Children with autism may benefit from being bilingual” written by Tim Newman. [To read this article, please click here.] Summarizing research published November 7, 2017, in the journal Child Development by Ana Maria Gonzales-Barrero and Aparna Nadig from McGill University’s School of Communication Sciences and Disorders in Montreal, Canada, this study examined the concept of “set-shifting,” or cognitive flexibility, in autism.

Cognitive flexibility deals with the ability to shift from thinking about one concept to another, which allows people to respond to changes around them. This ability to shift thoughts often proves difficult for people with autism who prefer predictable routines and schedules. However, flexible thinking is essential in developing certain skills, multitasking, and dealing with changes in life. Consequently, improving cognitive flexibility in children with autism may help their ability to learn new skills and to cope with transitions that may be challenging for them.

Previous studies have suggested that being bilingual improves certain cognitive skills, such as memory and focus. Researchers believe that switching between two languages enhances brain performance. In this particular study, the researchers wanted to see if being bilingual helped children with autism overcome difficulties in shifting their thoughts.

This research study included four groups of ten children ages 6-9, none of whom had intellectual disabilities: bilingual and typically developing, monolingual and typically developing, bilingual with autism, and monolingual with autism. These children completed tasks on computers in which they sorted objects by color then by shape. Although switching tasks is typically difficult for children with autism, those who were also bilingual did better than the monolingual children with autism. However, the researchers found that this bilingual advantage observed during the computer task was not found in daily life tasks. The researchers plan to expand their studies by following the development of these children for a few more years, and studies of more children may provide greater insight into the connection between bilingualism and cognitive flexibility.

As one of the researchers, Dr. Ana Maria Gonzales-Barrero, notes, “It is critical to have more sound evidence for families to use when making important educational and child-rearing decisions, since they are often advised that exposing a child with ASD to more than one language will just worsen their language difficulties.”

This research was especially intriguing to me because despite his difficulties in learning language, Alex has shown great interest in studying languages other than his native English. When he was a preschooler, he was fascinated by characters on the children’s television show Sesame Street who spoke Spanish. He especially showed an interest in learning how to count in other languages, so Ed taught him Spanish and French while I taught him German. When his occupational therapist discovered five-year-old Alex’s interest in other languages was a powerful motivator, she bribed him to do tasks he avoided. For example, she would teach him words in French if he would walk across a small wooden bridge or swing in the platform swing.

Wanting to expand beyond the languages his parents had learned in school, Alex found books in the library and at the bookstore that increased his knowledge of French, Spanish, and German and taught him Hebrew and Italian, which interested him. In addition, his beloved family doctor also taught him how to count in Swedish, which he found amusing. This interest in languages continued into his teens and twenties, and he was delighted when his behavioral therapist who was raised in Turkey was able to teach him how to count in Turkish. Even today, if he hears people speaking another language, he immediately notices and eagerly tries to figure out what language he is overhearing.

While I’m not certain whether Alex’s informal study of language has helped make his thinking more flexible, I do think that trying to say words in another language has made him more aware of how to pronounce words, which can be difficult for him. Maybe learning words in other languages has contributed to his phenomenal memory. Perhaps the most valuable use of his limited knowledge of various languages has been using multilingual counting as a calm down skill.

The practice of counting to ten when a person is angry is a common way to control temper. For Alex, rattling off the numbers from one to ten in English did not give him enough time to cool down when he was upset. Consequently, we had him count to ten in as many languages as he needed. Because he had to think harder to count in the other languages, this took him a bit longer to get through the counting routine. By the time he had reached “on” (ten in Turkish), he had usually shifted from being mad to being entertained by his ability to recite numbers in various languages.

Certainly, the impact of learning new languages upon flexibility of thought processes, especially in autism, merits further study. This research shows the importance of examining language acquisition as a way to help children with autism learn flexibility. With Alex, we have discovered that sometimes the most offbeat ways of helping him improve his skills often have the best results. As Alex’s beloved French-speaking occupational therapist taught us when he was little, always use his strengths to overcome his weaknesses. In this case, we are thankful that he has shown the interest and ability to learn bits of other languages that may have helped him develop skills he needs to cope with changes in life.

“There are many different languages in the world, and every language has meaning.” I Corinthians 14:10

A Success Story

 

Last Friday, we had our typical quarterly meeting with Alex’s support team; however, it was not typical. A few months ago, we found out that Alex’s fantastic case manager who had worked with us for more than five years––ever since he started receiving state waiver funds for autism––was resigning to go into a different career. While we were terribly disappointed to lose her, not just because she was excellent at her job but also because she is a genuinely kind person who took great interest in Alex, we hoped that her replacement would continue the good work she had started.

Once we were notified who would be Alex’s new case manager, the person who coordinates his support services and budget, we asked his therapists if they knew her. Both his behavioral therapist and music therapist had worked with the new case manager before, and they described her as experienced, pleasant, and quite capable. Moreover, his music therapist mentioned that this case manager was often given difficult cases because she could adeptly handle them. While I hoped we weren’t considered a difficult case, I was relieved that we were going to be working with someone who has an excellent reputation.

In the days leading up to our meeting, I was a bit obsessed with making a good first impression on our new case manager. Since the meetings are held in our home, I wanted our house to be sparkling clean, so I washed curtains, scrubbed kitchen cabinets and appliances, wiped down walls and woodwork, and vacuumed upholstery in addition to my regular cleaning routine. Knowing that case managers are concerned with the safety of their clients, I made certain our fire extinguisher was where I thought it was, replaced batteries and tested our smoke detectors and carbon monoxide detector, and was prepared to show her that the hot water heater is set so that Alex can’t be scalded.

Besides physically preparing our home for inspection, I also mentally prepared for any questions she might ask. Although Alex is doing quite well, and we are delighted with the professionals who work with him, I wondered if she would question why he is not in a day program, as many disabled adults at his age are. As though I were preparing for an interrogation, I rehearsed what I would say in my head, making sure I sounded confident about our decisions but not defensive. Essentially, I was overpreparing.

In addition to having the new case manager at the meeting, we also had a new representative from the company that provides music therapy and respite care. Even though I had met him before, Alex and Ed had not. Alex’s music therapist, who provides entertaining Alex anecdotes during meetings, was unable to attend, but his behavioral therapist, who is one of his biggest cheerleaders, was going to be there to sing his praises. Also, she was bringing a new therapist she is mentoring so that he could observe the process of quarterly meetings. This meant that three new people would be attending, giving me even more incentive to make sure everything was as perfect as possible.

On the morning of the meeting, Alex seemed a bit anxious and confirmed my suspicion by waving “the claw,” his hand pointed down with his wrist at a 90-degree angle, a gesture he uses to let us know he’s not happy about something. As I asked him why he was upset, he told me that he was nervous about “so many new people” and letting “strangers” in our house for the meeting. Although I completely understood his anxiety about meeting new people, I reassured him that they weren’t really strangers but just people we hadn’t met yet. Once I explained that everyone in the group knew somebody and that his dad and I would be there along with his beloved behavioral therapist, he seemed less anxious about the meeting.

As it turns out, his fears and my concerns were wasted energy because the meeting went extremely well. The “strangers” were friendly, and the conversation flowed smoothly. Alex’s new case manager exceeded her excellent reputation, clearly capable of handling his case and supportive of all the decisions we have made, including our decision not to put him in a day program at this point. Moreover, she praised our support staff and told me that Alex’s therapists are wonderful, and we completely agree. With her comforting manner, I doubt she would have even noticed had I not vacuumed the couch and chairs.

During the meeting, we discussed the progress Alex has made in the past few years, and his behavioral therapist enthusiastically explained the improvements she has seen that have allowed Alex to enjoy community outings and crediting Ed and me for our support. We also discussed how Alex has adapted quite well to three anxiety medication reductions in the past eight months, which is apparently quite rare, according to his behavioral therapist and his case manager. In fact, his case manager summarized how well Alex is doing in so many ways by calling him “a success story.” She went on to explain that her experience has been that people with autism don’t improve as much as Alex has.

Knowing that she had read all of Alex’s files, even the harrowing introduction describing his out-of-control anxiety causing aggressive behavior six years ago that led to weeks of hospitalization in a locked psychiatric ward, I noted that she was impressed with the calm and pleasant current version of our son. While Ed and I were pleased that the meeting, despite all the new people, went smoothly, we were even more pleased that Alex was remarkably patient, polite, and engaged in the proceedings. He answered all of the questions asked of him well, and he sat nicely the entire hour. We could not have been any prouder of how he handled himself in this situation he had earlier admitted made him uneasy.

As we concluded the meeting, his case manager asked us, knowing the struggles we had faced, if we ever thought Alex would be doing as well as he is right now. To be honest, in my head I’ve had fears and doubts over the years, but in my heart I’ve believed that he would get better and better with time. To answer her question, I simply replied, “We prayed for this.” For all our fears, big and small, God has worked out all the details––from bringing us the right people supporting us in making Alex better to guiding us as parents how to best help him to healing his body and mind. While we are overjoyed that his case manager and therapists see Alex as a success story, we know who was truly responsible for bringing him this far, and we give the glory to God. Moreover, we wait with anticipation to see what God has planned for Alex to continue his success story.

“And my God will meet all your needs according to the riches of His glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen.” Philippians 4:19-20