Sunday, January 14, 2018

Teaching Mercy

 
Lately, Alex has been resistant to going places, seemingly anxious about leaving the house. This unwillingness to go places is out of character for him, especially considering that one of his summer goals was to “put lots of miles on Daddy’s car.” However, the recent stretch of single digit temperatures coupled with below zero wind chills would certainly explain his preference for staying home, rather than going outside in the bitter cold.

His reluctance to get in the car, though, seems to go beyond dealing with the discomfort of winter weather. After some encouragement to express his concerns, we discovered that Alex was still upset about something we had forgotten. A few weeks ago, his soft drink that was sitting in the back seat cup holder tipped over and spilled on the seat. Knowing this was an accident, we didn’t react much, simply cleaning up the mess and assuring him that he didn’t do anything wrong. However, he still felt guilty, even though we held him blameless. Once we discovered that he was still feeling bad about what he thought was his fault, we once again reassured him that we weren’t angry or upset and that he didn’t need to feel bad about what had happened, hoping to rid him of anxiety about riding in the car.

Nonetheless, he seems to have current concerns about things falling. Last week, when his music therapist placed his music book on the keyboard, Alex was certain that the book was going to fall on the floor. Because he couldn’t quite find the words to express his fears, he let out a growl to let his therapist know he was upset. As his therapist and I tried to figure out why Alex wasn’t happy, he finally told us that he thought the book would fall, and that worried him. As his therapist demonstrated that the book was secure on the keyboard, I explained that even if the book fell, no harm would be done. The book falling wouldn’t make a mess, and his therapist would simply pick it up and put it back. After being reassured, Alex was able to continue successfully with the music therapy session. Knowing this incident was likely related to the spilled drink in the car incident, I decided not to mention the fears of the notebook falling again for fear of stirring up the memories of the spilled drink.

When Ed came home from work later that day, he asked me how Alex had done with music therapy, and I told him everything was fine, not wanting to make a deal of Alex’s brief moment of upset that never escalated, especially if Alex were eavesdropping, which he often does. However, when Ed later asked Alex about music therapy, he admitted to Ed that he had gotten upset. When Ed asked him what he had done, looking for details about the triggers of the upset and his reactions, Alex instead calmly replied, “Got over it.” Although Alex apparently needed to confess what had happened, he also seemed proud that he had dealt with the situation well.

Several years ago when we were having behavioral issues with Alex, he would ask me every night after bedtime prayers if had had done “anything bad” that day. While I was proud that he seemed to have developed a strong conscience and a sense of right and wrong, I never wanted him to have feelings of guilt afterward. Because his behavior has significantly improved over the years, he rarely asks me for a nightly accounting of his sins anymore. Most of the time if he does ask me if he did anything bad that day, I will tell him no, which is my honest assessment of his behavior. However, he sometimes reminds me that he got upset that day, and I must reassure him that everyone gets upset and compliment him that he handled the upset well, getting over it and apologizing. Somehow our discussions always seem to make him feel better, as he smiles and drifts off to a peaceful sleep.

Alex’s apparent need for absolution has made me think about how we as parents teach forgiveness and, by extension, explain God’s mercy. When I was growing up, I remember my mom teaching me that when I did something wrong, I simply needed to apologize, ask God to forgive me, and try to do better. Because she was always loving and forgiving, I learned that God was always loving and forgiving. If we want our children to understand God’s mercy, we must be merciful parents. We always want Alex to know that no matter what he does, we will love and forgive him, and more importantly, God will love and forgive him.

When Alex makes mistakes, we expect him to apologize, but we don’t want him to continue to obsess about what he has done wrong. Instead, we want him to know that we have forgiven him and hold nothing against him. Being raised in Protestant churches, that method of forgiveness has usually satisfied me. On the other hand, Ed, who was raised Catholic, grew up with the ritual of confessing sins. (I once asked him what he usually confessed to the priests, and he told me “eating meat on Friday” and “using the Lord’s name in vain,” both of which I have witnessed. If that’s all he did wrong as a kid, his parents can feel proud.)

Perhaps Alex needs that act of confession, as evidenced in his bedtime queries of what he did wrong or in his telling his dad the events I held in confidence, as a way of unburdening his conscience. Maybe admitting what he has done wrong decreases his anxiety since he seems to feel relief in listing his sins aloud. While we try to minimize his faults to show mercy and forgiveness, Alex wants to confess them and be reassured that even when reminded of his faults, we still love him unconditionally.

Through his confessions, Alex may gain what he really needs: absolution. When all we ask of him is an apology and an effort to do better next time––instead of punishing him––he knows that we love him and forgive him. If we as imperfect human parents can do that, certainly his heavenly Father will do the same. Consequently, he rests peacefully in the knowledge that he can obtain mercy whenever he needs it, and hopefully he is learning to extend mercy to others in the same way he has been shown compassion.

“But You, O Lord, are a God of compassion and mercy, slow to get angry and filled with unfailing love and faithfulness.” Psalm 86:15

Sunday, January 7, 2018

Autism Rates Plateau?

 
On the second day of 2018, the news proclaimed that autism rates in the United States had reached a plateau. Of course, this report should be cause for great celebration, but before we get too excited, the details need some scrutiny first. On Tuesday, January 2, 2018, the Los Angeles Times published an article written by Karen Kaplan entitled “Autism spectrum disorders appear to have stabilized among U.S. kids and teens” based upon research published that same day in The Journal of the American Medical Association. [To read this article, please click here.] Other media outlets also reported this information that seems to indicate that the rate of autism is not currently increasing. However, a closer look at this research may lead to other conclusions.

The research conducted by the National Health Interview Survey (NHIS) includes polls of American households across the county about various health conditions. When families are polled, one child is chosen at random to be included in this survey. Parents are asked the following question: “Has a doctor or health professional ever told you that (the randomly selected child) has autism, Asperger’s disorder, pervasive developmental disorder, or autism spectrum disorder?”

In 2014, 2015, and 2016, 711 parents out of the 30,502 polled answered yes to that question; their children had some form of autism. That data was given to researchers at the University of Iowa, who considered the likelihood of a household being chosen that had a child with autism and how likely a parent would be to answer that question. Using their statistical methods, they determined the rate of autism for U.S. children and teens to be 2.41% in the years 2014-2016.

Although the rate of autism increased, according to this study, from 2.24% in 2014, 2.41% in 2015, and 2.58% in 2016, the researchers concluded that the increase was not statistically significant and could be due to chance. Hence, they decided that the rates have stabilized. (If the rates could be due to chance, what was the point of the University of Iowa researchers calculating based upon likelihoods?) Over those three years, the rate of autism for boys was higher at 3.54% than the rate for girls at 1.22%. Rates of autism around the United States varied somewhat with the South at 2.21%, the West at 2.24%, the Midwest at 2.47%, and the Northeast at 3.05%.

In comparing data with another research study, the NHIS reported higher numbers of autism than the Autism and Developmental Disabilities Monitoring Network (ADDM). However, the ADDM research only focuses on a few communities (about twelve), while the NHIS surveys the entire country. In addition, the methodology is different. The NHIS relies upon family members to report whether their children have autism, whereas the ADDM has doctors review medical and educational records of the children. Nonetheless, both research groups imply that autism rates have stabilized.

The University of Iowa researchers affiliated with the NHIS study indicate that more research needs to be done to ascertain what factors, such as environmental causes, diagnostic criteria, autism awareness, or others, may be the reason for this “apparent end to a decade-long increase” in the rates of autism in the United States.

Ironically, last month that same study by the NHIS was used to show that the U.S. autism rate in 2016 reached a record high: 1 in 36 children and 1 in 28 boys. This was an increase from the previous rate of 1 in 43 children with autism in 2015 and 1 in 45 children in 2014. Nonetheless, the U.S. Centers for Disease Control minimized the significance of this increase, stating, “there was not a statistically significant change in the prevalence of children ever diagnosed with autism spectrum disorder from 2014 to 2016.” Of course, the CDC also assures people that vaccines are perfectly safe for everyone and enthusiastically recommended flu shots that have proven to be essentially useless this year.

Some factors that may skew the data would be the willingness of parents to share that their children have autism for a survey; some parents would consider that information confidential. Also, the methodology of the survey that chooses a random child might miss another child in the family who has autism. In addition, this survey includes children ages 3-7, but some children do not receive a diagnosis of autism until they are in school, which may cause the data to reflect autism numbers less than the actual statistics. Moreover, the wording of the survey question regarding autism may be problematic. Specifically, the question asks if a doctor or health professional has diagnosed the child’s autism.

However, many children, including mine, were diagnosed with autism through the educational system. In fact, my son’s pediatrician disagreed with me when I told him I thought Alex had autism, telling me that Alex was "too smart" to be autistic. Had we not pursued further testing through the school system, a diagnosis would have been delayed. That was more than twenty years ago; I would truly hope more doctors would recognize signs of autism in toddlers and trust their parents’ intuition regarding developmental delays in their children.

While I have great hope that autism rates in the United States and around the world will eventually stabilize and even decrease, I do not believe that is happening now, despite what the media reports. The methodology behind this research, like most surveys, seems to have flaws that could lead researchers to inaccurate conclusions. While the subjects of this particular research may appear only as numbers and percentages, we must remember that these are real children with autism and their families who need help. To minimize the impact of the increase of autism in this country may lead to less support for their unique needs and to less research to find the cause and cure for this lifelong disability. Our children cannot be reduced to a statistic that may or may not be true. Until a cure for autism is found, we parents must speak up for our precious children whose voices have been hindered or silenced by autism. They certainly deserve no less.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Sunday, December 31, 2017

Jeers and Cheers 2017

 
Every week, TV Guide Magazine offers a feature entitled “Cheers and Jeers” with brief descriptions of what the writers thought were the best and worst in television for that week. At the end of the year, they do a “Cheers and Jeers” summary for the entire year, a best (“Love it!”) and worst (“Hate it!”) list for the year in review. Like many people do on the last day of the year, I’ve been reflecting on 2017 and coming up with my own “Cheers and Jeers” list for the year. However, since I like to end on a positive note, I’ll flip the order and call this “Jeers and Cheers” for 2017.

Jeers to candida, the bane of our existence! Alex has struggled with candida overgrowth in his digestive tract for years, primarily in the form of thrush that irritates his mouth and throat. Moreover, it just makes him plain irritable and irritating. This year he had a doozy of a case of thrush that lasted for months and required multiple doses of the prescription anti-fungal fluconazole.

Cheers to Alex’s primary care doctor! Not only does he recognize how negatively candida overgrowth affects Alex’s health and behavior, but he also worked closely with us for months, trying to eradicate this annoying condition by prescribing appropriate doses of medication. At Alex’s annual physical last week, his doctor told us that he couldn’t see any signs of thrush, so hopefully, we have this under control going into the new year.

Jeers to the mainstream media who chose to downplay or ignore the new autism statistics released by the U.S. Centers for Disease Control that show 1 in 36 kids have autism and 1 in 28 boys have autism! Perhaps following the “Me, too” movement of victims of sexual harassment, parents of children with autism need to start a social media blitz indicating “Mine, too,” to share the widespread impact of autism upon our children.

Cheers to ABC for adding to their fall line-up, The Good Doctor, a wonderful show featuring a main character with autism! Not only does actor Freddie Highmore do a fantastic job of portraying a young man with autism, but also he makes Dr. Shaun Murphy loveable in spite of his impaired social skills.

Jeers to whatever suddenly made Alex a picky eater this year! Although many children and adults with autism are picky eaters, Alex has always had an excellent appetite and was willing to eat nearly any foods we gave him. Currently, he has limited his diet to fruit, Jello, Rice Dream, coconut milk smoothies, and scrambled eggs with spinach herb seasoning. This change in his eating habits has made me quite empathetic to those parents whose children refuse to eat most foods.

Cheers to whatever suddenly made Alex decide that he wanted to eat pepperoni last week! He asked me a few days ago if we had any pepperoni, and when I bought some for him at the store I had doubts that he would eat it. However, this is his new favorite food, and we’re happy that he is moving away from the vegetarian (fruitarian?) diet he’s adopted for the past eight months. Fingers crossed he’ll come up with some new ideas of foods he’d like to eat in 2018.

Jeers to losing two terrific members of Alex’s support team! His case manager and the representative from the agency that provides respite care both took other jobs, and we are sorry to see them go. Their enthusiasm, expertise, and efficiency made them outstanding, and both of them were especially kind to Alex. We hope that their replacements will do a good job, too.

Cheers to our fantastic long-time members of Alex’s support team! Even though his behavioral therapist and music therapist are now in supervisory positions and his respite care worker has another full-time job, they have continued to keep Alex on their caseload when they had to let other clients go. We are extremely thankful for these three whose kindness, dedication, and patience have helped Alex make significant progress.

Jeers to the manufacturer of paliperidone that had to recall their medication because the time-release aspect did not work properly! Apparently, this company has decided to cease production of the drug, creating a shortage.

Cheers to how well Alex has responded to medication reduction this year! With the shortage of paliperidone, we cut his dose in half this month with the blessing of his psychiatric nurse practitioner, and he has done remarkably well. In addition, he weaned off one medication completely this year, and he is on a lower dose of another. Praise God that he doesn’t need as many medications to remain calm and content!

Jeers to anxiety that makes Alex’s life more difficult! Like his mother, he thinks too much and worries about things that will likely never happen. Nonetheless, his fears are very real to him, and he relies upon schedules and lists to help him cope.

Cheers to the coping skills Alex has learned through behavioral therapy! Now, instead of escalating into agitation and meltdown, he has learned to express his feelings in a reasonable way, telling us that he’s upset. He’s also learned that sometimes he needs to sit and be quiet, but other times he wants to discuss what’s bothering him. This learning to be in tune with his feelings has been a huge improvement and a help to him and to us.

Jeers to the majority of autism research that does nothing to help families currently struggling with autism! Moreover, while certain factors contributing to autism exist, most mainstream medicine ignores these potential causes.

Cheers to the work of Professor Chris Exley of Keele University in England, who has discovered a link between aluminum toxicity and Alzheimer’s disease and autism! Moreover, his research indicating the value of drinking silicon-rich mineral water, such as Fiji and Volvic, gives hope that a simple solution may exist to lessen the effects of aluminum in the body.

Jeers to the obstacles autism presents! From impaired language to difficulties with social skills to health issues to poor motor skills, autism makes life harder than necessary. Add in intense anxiety that can lead to aggression and the tendency to wander from places of safety to ponds, railroad tracks, and highways, and people with autism are put in grave danger.

Cheers to the progress Alex has made in 2017! Thanks to God’s blessings and healing, along with Alex’s tenacity, he continues to overcome challenges and get better with time. May the coming year 2018 bring our children with autism health, happiness, and hope!

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

Sunday, December 24, 2017

"All Is Calm; All Is Bright"

 
I don’t like change; in fact, most of the time I’m perfectly happy staying in a familiar rut. Sometimes, God has to give me multiple signs in order for me to do something different, to step out of my comfort zone. Recently, a series of small jolts pushed us to make changes in Alex’s best interests, and so far, the results have indicated that doing something new was absolutely the right decision.

About two weeks ago, when I went to pick up Alex’s medications at the pharmacy, one of them mysteriously was not with the others. The pharmacy technician was puzzled as to why it was missing, but assured me she would check on it and felt confident it would arrive that afternoon. Later in the day, I received a call from the pharmacy that the medication still had not arrived, but they would order it again and hoped it would be ready for pick up the following day. Even though I was confused about the delay on the arrival of the medication, I wasn’t that concerned because I still had a week’s worth.

The next afternoon, I had a message on our answering machine from the pharmacy that not only had the medication still not arrived, but it was also on backorder, and they didn’t know when they could get it. Now I was getting nervous. I called the pharmacy to find out more, and the pharmacy technician told me the company that manufactured that particular drug had stopped producing it. A Google search after I got off the phone gave a hint as to why they suddenly stopped manufacturing it; they had to recall several batches of this time-release drug because apparently it was not properly releasing the doses throughout the day.

When I asked the technician if they could get the medication from another company, she told me that it was the only company who made the drug. Knowing that was not correct because in the past Alex had taken the medication made by another manufacturer, I told her there was another company, but she insisted there was not. (Another Google search confirmed that I was correct as I found the name of the other company.) She did tell me another store in a nearby town had some, but we would have to transfer the prescription and go to pick up the pills ourselves. Not happy with the news she had given me, I nonetheless thanked her for the information and hung up the phone to ponder our options.

At this point, I was verging into panic mode. What were we going to do if we couldn’t get this medication for Alex? I decided to go to the pharmacy the next morning and talk to a pharmacist in person and explain my concerns about finding the medication soon. The pharmacist understood my concerns and immediately tried to track down Alex’s prescription. She scoured the warehouse records, tried to order more, and even called a competitor’s pharmacy to see if they had any in stock. In addition, she passed along the information to the pharmacy manager, including the name of the other company that manufactures the drug, which I had given her.

The next day I received notification that Alex’s prescription had been filled, which came as a huge relief. When I went to pick up the pills, there was a note that they had gotten them from the store in the nearby town––saving us a trip there––and that they were still trying to track down this medication from their warehouse. While I was delighted to have enough pills to administer twice a day for a month, we still don’t know if the pharmacy will be able to get more next month. Perhaps this was God’s way of telling me it was time to wean Alex off this medication, as we had done with two others successfully.

Contacting the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety, I sent her an email explaining the shortage of this particular medicine. First, I asked her what medication could substitute for the one he’s been taking, and then I asked if we could try weaning him off the medication by forgoing the nighttime dose, since he’s sleeping and wouldn’t be bothered by possible side effects as much. In her email response, I found out the replacement drug is one I really don’t want Alex to take because it has terrible side effects. However, she did agree that he could try not taking the nighttime dose and see how he does.

After discussing our options with Ed, we agreed that now is the time to try taking Alex off the nighttime dose since he’s doing well managing his anxiety. So, last Monday, for the first time in years, we did not give Alex the nighttime dose of that medication. Although I worried that he might have trouble going to sleep or might wake in the night or could wake up in the morning irritable without that dose, he fell asleep easily, slept peacefully through the night, and awakened in a sweet mood. Moreover, he was sweet natured every day last week, despite having his medication reduced by half. Clearly, taking away the nighttime dose was the right thing to do, and we are thankful that he doesn’t seem to be having any negative side effects from this change.

Early Thursday morning, Alex awakened me around 4:30 A.M., and a sense of dread awakened with me. Was the lack of medication affecting his sleep, and would he be agitated? No, he simply wanted to inform me that the power had gone off briefly in the night, and he calmly told me that his alarm clock wasn’t working. As I stumbled into his darkened room, half asleep and terribly nearsighted, I tried to see what was wrong with his clock, plugging it in different outlets, but having no luck.

Since time is very important to Alex, even in the night, I was concerned that he would be very upset that his clock would not work. No, he sat calmly on his bed, even amused that I was clumsily doing everything I could to make his clock work. Finally, I told him that his clock was broken, but I would go to Target when they opened and buy him a new one. Completely satisfied and not a bit irritated, he smiled, crawled under his covers, and went back to sleep. If I had any lingering doubts about taking away the nighttime dose of medication, they were gone. Alex calmly handled a situation that could have upset him in the night without the medication regulating his mood. There in the dark, sleepy, and half-blind, I saw clearly: God had planned this all along.

Because we were content with how well things were going, we weren’t going to initiate medication changes. However, God knew that Alex no longer needed this medication at night and put us in a situation where we feared that we wouldn’t be able to get more. Despite our fears that the change would be hard on Alex (and by association, us, too), he has dealt with the medication reduction beautifully, even in a situation that could have upset him. Once again, we were reminded that God knows what Alex needs better than we do, and we simply need to trust Him, pray for guidance, and be willing to embrace changes instead of fearing them. Tomorrow, as we celebrate the birth of God’s son, I pray that my faith will be more childlike––like my son’s––as I wait with anticipation, trying to be fearless and accepting changes, knowing that God’s plans for Alex’s life are better than anything I can imagine.

“They were terrified, but the angel reassured them. ‘Don’t be afraid!’ he said. ‘I bring you good news that will bring great joy to all people. The Savior––yes, the Messiah, the Lord––has been born today in Bethlehem, the city of David!’” Luke 2:9-12

Sunday, December 17, 2017

Twenty-six

Yesterday Alex turned twenty-six. To be honest, celebrating birthdays with a child who has autism presents challenges. Over the years, we’ve learned to keep things as low key as possible so as not to overwhelm him on his special day. Moreover, I try not to focus on the milestones I had hoped he’d reach by each increasing age and instead be grateful for the progress he has made in the past year. Twenty-five was a good year for him, despite the bad bout of thrush he's had and the diminished appetite he’s had for the past seven months. Alex has shown maturity in handling anxiety, learning when he needs to talk about his feelings and when he just wants to be alone to figure out his thoughts. He has also developed his social skills to the point we are able to take him many different places, such as concerts and sporting events, and know that he will behave himself and enjoy the activity. These are blessings we don’t take for granted.

Perfectionist that I am, I wanted Alex’s birthday to be perfect. For weeks, I have thought about what gifts he might enjoy. He rarely if ever offers any suggestions, so I’m basically on my own for coming up with ideas. Nonetheless, Internet shopping conveniently allows me access to a wide array of products that suit his interests. For my Chicago Cubs fan, I ordered a Cubs drinking cup, a Cubs 2018 calendar, and an Anthony Rizzo ornament for our Christmas tree. Since he loves Wheel of Fortune, I ordered a hat and t-shirt with the Wheel of Fortune logo. In addition, I found him a Boogie Board Jot electronic notepad to write his beloved lists and a fun dice game to play. Of course, I also went with the annual tradition of getting him his cherished World Almanac.

Although he was pleasant while opening his gifts, he was also a bit subdued. Because his fine motor skills are poor, opening gifts isn’t easy for him, and he has to destroy envelopes to remove the cards inside. Nonetheless, he never complains about how his lack of dexterity makes getting to the gifts more difficult and seems to prefer wrapping paper to gift bags. After he opened his presents and thanked us, he trotted off with his World Almanac and retreated to his bedroom to read.

As Ed and I checked on Alex throughout the day, he seemed to want to be alone to read his new book, but he complained of stomachache a few times and asked for baking soda water. He had taken his regular Friday dose of antifungal for thrush the day before, so we assumed that the upset stomach was probably related to that. Knowing that he probably wouldn’t eat much but wanted his favorite food, shrimp, for his birthday, we went and got Chinese takeout food. Even though he loves shrimp kow, he only ate a few bites before telling us he was full. Ed was able to convince him to eat a little more, but he wound up eating his standby dinner of the past few months of scrambled eggs and applesauce instead.

Because Alex has limited his diet to only a few foods, I have been wracking my brain to think of a birthday cake––gluten-free and dairy-free as well––that might appeal to him. Since he loves applesauce, I decided to bake an apple cake from scratch with a very soft texture and an appealing smell, thanks to the cinnamon sugar on top. I even cut the apples into tiny pieces so that they would be easy to eat. To make the cake more special, I found coconut milk whipped topping that tastes just like Cool Whip. Despite my best-laid plans, Alex took one bite of the delicious cake and spit it out. After making sure he didn’t want any, despite my usual patience, I took the cake and threw it in the garbage in frustration. Fortunately, I had made another cake with regular milk and flour so that my parents, who had come for Alex’s birthday, and Ed and I could enjoy the tasty treat. Nonetheless, I was disappointed that Alex didn’t like the cake I had made especially for him.

Although he was calm and pleasant, Alex didn’t say much while my parents were here, and eventually he went up to his room while the four of us visited. Before they left, Ed went up to get him to say goodbye, expecting to find him resting. Instead, he discovered that Alex was having a fine time doing what he wanted to do. In a rather odd combination, Alex was watching You Tube videos on his iPad, specifically Bruce Springsteen singing “Santa Claus Is Coming to Town” while reading a New Testament Bible my aunt and uncle had given to him a while ago. Even though he was enjoying this alone time with the Boss and the Bible, Alex came downstairs to say goodbye to my parents nicely.

Perhaps Alex doesn’t want to make as big a deal about his birthday as I do; he seems more excited about the upcoming birthday of Jesus instead. While I thought I had let him down because he didn’t seem as enthusiastic about his birthday gifts, meal, and cake, I may have misinterpreted his behavior. When he was getting ready for bed, I asked him what he liked best about his birthday, and he told me it was the shrimp. (I shouldn’t have been surprised since shrimp is one of the special things in life Alex rates at 100%.) When I asked him what he liked least (anticipating the cake he spit out disdainfully), he earnestly told me, “Nothing.” This was certainly reassuring for me.

As we approach Christmas in the coming days, I need to remember that life––especially life with autism––is not going to be perfect, no matter how much I plan. However, Alex doesn’t expect perfection from me; he’s content with a good book, a familiar tune, and the peace that comes from knowing that we love him and that God is watching over him. During this Christmas season, may we all know that simple joy, peace, love, and faith!

“Look! The virgin will conceive a child! She will give birth to a son, and they will call him Immanuel, which means ‘God is with us.’” Matthew 1:23

Sunday, December 10, 2017

"Repeat the Sounding Joy"

 
Last Sunday, we took Alex to Tuba Christmas, a wonderful annual concert held in Valparaiso University’s beautiful Chapel of the Resurrection. Although Alex has enjoyed this concert in past years, we had a little bit of trepidation as to how he might react this year, due to his recent increased sound sensitivity. In fact, last month we had to leave a jazz concert early because he covered his ears and told us the loud music bothered him. We hoped that the much larger venue would help make the sound of the music less intense for him and that the lower brass sounds would bother him less than the shrill trumpets and saxophones at the jazz concert. Just to be sure, we sat in the back of the chapel, where he would be farther away from the musical instruments and where we could leave quickly if he became overwhelmed.

Despite the large crowd, Alex seemed comfortable while waiting for the concert to begin and studied the lyric sheet given to us as we entered. As the first song played, he began to sway to the music and was clearly content. For this concert, the musicians play familiar Christmas carols once and then have the audience sing along the second time they play the song. Alex used his index finger to follow along with the words to the songs and smiled as he sang softly to the familiar tunes, several of which he sings each week with his music therapist.

During the second song, a family came and sat behind us, and one of them was obviously excited to be there. I tried to turn subtly to see the young man who was singing with such enthusiasm, but I couldn’t see his face. However, as I turned, his mother recognized me and said hello to Alex and me; she is an awesome autism mom we know. Her son with autism is a little younger but more verbal than Alex, and at the end of each song, he happily exclaimed, “Wow! That was great!” I knew Alex felt the same way as the other young man; even though Alex didn’t say much, he grinned and shuddered with joy.

As I looked around the packed chapel, I saw many people checking out their phones instead of being totally present in the moment. None were as engaged as the young man sitting behind me and my son sitting beside me. Truly, these two embodied the “joyful and triumphant” described in “O Come All Ye Faithful.” Even though autism has presented obstacles that make their lives more difficult, they find joy and triumph in listening to music and singing Christmas songs.

At the end of the concert, the young man proclaimed, “That was the best Tuba Christmas EVER!” When I asked him if he had fun, he enthusiastically told me he did. While Alex was less vocal in his praise, he quietly but happily told us that he liked the concert “one hundred percent” and said that he wanted to come back for Tuba Christmas again next year. I’m glad we didn’t allow our concerns about having to leave the jazz concert early last month prevent us from taking him to this concert because Alex clearly enjoyed himself, and we had the opportunity to share the joy of the holiday spirit with a family like ours, raising a young man with autism.

Of the dozen or so songs we sang that afternoon, the one that best reflected the eager anticipation of our sons with autism was “Joy to the World.” While others may be caught up in holiday tasks of buying and wrapping gifts, decorating houses, baking goodies, and sending cards, Alex spends December looking forward to his own birthday and that of Jesus. Reminding us to celebrate, the song provides the reason why: “Joy to the world! The Lord is come. Let earth receive her King. Let every heart prepare Him room.” Certainly, the two young men with autism sitting in the back of the chapel where they wouldn’t bother anyone were ready to receive their King; their hearts, filled with childlike faith, had already prepared room for Him. In the last verse of the song, we are reminded repeatedly to “repeat the sounding joy,” something we sometimes forget, but an important detail our sons remember.

As the days preceding Christmas dwindle, I am thankful that Alex reminds me daily to savor the anticipation leading up to his favorite holiday. When I feel frustrated or disappointed that his life isn’t as I had hoped it would be because autism has created challenges for him, I think of him and my friend’s son happily singing Christmas carols in the back of the Chapel of the Resurrection. At the front of the chapel, the statue of Christus Rex, Christ the King, joyfully and triumphantly lifts His hands in victory, assuring me that all will be well in the end. Indeed, “Repeat the sounding joy!”

“But the angel said to them, ‘Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; He is the Messiah, the Lord.’” Luke 2:10-11

Sunday, December 3, 2017

Unlucky 13: Aluminum Toxicity in Autism

 
A few days ago, new research published in the Journal of Trace Elements in Medicine and Biology showed “shockingly high” levels of aluminum in the brains of teenagers diagnosed with autism. [To read an excellent article from the Children’s Medical Safety Research Institute, who funded this study, please click here.] Compared to previous brain studies of people who did not have autism, those with autism had much higher aluminum levels found in all four lobes of the brain. In fact, the results of this study found “some of the highest values of aluminum yet measured in human brain tissue.”

The author of the study, Dr. Christopher Exley, Professor in Bioinorganic Chemistry at Keele University in England notes the potential impact of high levels of aluminum upon the brain, stating, “…these very high concentrations of a neurotoxin in brain tissue are not going to be benign and will contribute to neurodegeneration in affected tissues.” Dr. Exley, who also published recent research regarding high levels of aluminum in the brains of those who died of Alzheimer’s disease, poses an important question: “One has to wonder why aluminum in the occipital lobe of a 15-year-old boy with autism would be a value that is at least 10 times higher than what might be considered acceptable for an elderly adult?”

So how did the aluminum get into the brain in the first place? This research indicates that inflammatory cells loaded with aluminum cross the blood-brain barrier. A potential source of this aluminum is adjuvants from vaccines. Adjuvants are used to improve the immune response in vaccines, according to information from The Children’s Hospital of Philadelphia [To read this report, please click here.] CHOP asserts that the maximum amount of aluminum that an infant following the recommended vaccine schedule for the first year would receive is about 4 milligrams, which they assure is a safe level, especially compared to the aluminum they may be also ingesting from breast milk or formula. Although aluminum is a known neurotoxin present in food that apparently cannot be avoided, they, nonetheless, still recommend injecting infants with additional amounts that can end up in their developing brains.

In addition, they also note that aluminum from vaccines enters the bloodstream, whereas aluminum from food enters the intestines, where less than one percent is absorbed into the blood. To reassure parents, they state, “The ability of the body to rapidly eliminate aluminum accounts for its excellent record of safety.” Even though aluminum is present in DPT, Hib, and hepatitis shots routinely given to infants, this should not concern parents, according to CHOP’s position.

But what about those infants whose ability to eliminate toxins from their system has been compromised, as is frequently found in children with autism? Children with autism often have toxic metals in their system that their bodies have not purged. For example, tests revealed that Alex had toxic levels of arsenic, mercury, lead, and aluminum. Since his body could not detox itself, he had to go through chelation therapy in which he took DMSA, sulfur-based pills designed to bond with the toxic metals and remove them from his body. In addition, he took magnesium glycinate supplements to reduce his aluminum load. To prevent further accumulation of aluminum, we don’t cook his food in aluminum pans, and he has used aluminum-free deodorants for many years. (He currently uses Arm and Hammer’s Essentials deodorant with natural deodorizers and no aluminum or parabens.) He regularly takes baths with Epsom salt, which is magnesium sulfate, to detox his body. Most importantly, he has not received any more vaccines in the past twenty years. Nonetheless, I still wonder how much damage aluminum adjuvants from his childhood vaccines have done to his developing brain. How many children and adults with autism are suffering the ill effects of aluminum poisoning similar to those found in elderly Alzheimer’s patients?

Certainly, more research needs to be done regarding why people with autism may have more aluminum in their brains, the impact this neurotoxin may have upon their behavior and learning, and how to heal their brains. Another report that received very little attention in the mainstream media last week involved the new statistics released by the National Health Center for Health Statistics regarding the prevalence of autism. [To read an outstanding article on this topic, please click here.] In honor of my son who loves numbers and statistics, I offer the following shocking percentages and ratios:

The rate of autism spectrum disorders for 2016 is 2.76%.

That translates into 1 in 36 American children with autism, up from 1 in 45.

Since autism is more prevalent in boys, the rate is 1 in 28 boys born between 2014-2016.

NCHS statistics indicate a 147% increase in children with autism in less than a decade.

Our society is ill-prepared to care for the multitude of children with autism who will become adults with autism. Consequently, more research must be done to find a cure for autism now. Maybe aluminum holds the key to this mystery and needs further investigation, and perhaps the effect of aluminum adjuvants should be considered. I'm not a doctor––just an autism mom looking for ways to help my child heal. However, I do know that God has a divine plan, and I must have faith to wait for the “appointed time” that He has promised.

“For the vision is yet for the appointed time; It hastens toward the goal and it will not fail. Though it tarries, wait for it; For it will certainly come, it will not delay.” Habakkuk 2:3

Sunday, November 26, 2017

Christmas Shopping for Kids and Adults with Autism

 
When I was a kid, my siblings and I eagerly awaited the arrival of the Sears Christmas catalog in the mail every November. Known as the Sears Wish Book, the catalog was published annually from 1933-2011. I imagine that in many households, children often impatiently waited their turns to see what the catalog displayed so that they could dream of what Santa would bring them. My brother, sister, and I used the Wish Book to make lists of what Christmas gifts we wanted each year, and every year my brother had to edit his lengthy list. Apparently realizing customers missed that annual tradition and the nostalgia that surrounded it, Sears revived the Wish Book this year with an online edition at their website and a limited printed version for their best customers.

Although the Wish Book was a staple of my childhood, Alex has grown up in the computer age where online shopping and the seemingly endless availability of products on Amazon have changed holiday shopping. By typing in a few clues, I have been able to find gifts that matched his unique interests. For example, his love of the irrational number pi led me to find a door-sized poster with the first one thousand digits of pi, a pie plate with the symbol of pi and several digits, a roll-up tape measure with several digits of pi, and several books about his favorite mathematical concept.

While others are out shopping on Black Friday, I’m home with my laptop scouring possible gifts for Alex. Added to the challenge of finding Christmas gifts he will love is the arrival of his birthday nine days before Christmas. In addition, he rarely gives any suggestions about what he would like, so I’m often working without the lists my siblings and I were kind enough to supply to my parents when we were kids.

Fortunately, other parents facing similar dilemmas of buying gifts for their children with autism have offered ideas and suggestions in helpful online lists. I recently discovered a great blog entry on the Recovering Kids Blog entitled, “Top 25 Foolproof Holiday Gift Ideas for Kids with Autism” that introduced me to the Boogie Board Jot. [To read this article, please click here.] After reading about the Boogie Board Jot, an LCD eWriter for writing lists and drawing with a stylus that can be erased with a push of a button, I knew this was ideal for Alex and his need to jot lists. Some comparison pricing online led me to ordering it from Best Buy, which also had free shipping.

Another great site for shopping is National Autism Resources, which offers a “Toy and Gift Guide for Autistic Kids and Teens.” [To see this list, please click here.] This user-friendly list allows the parent to shop by the age of the child and the type of toy, which is very helpful. Recognizing that many parents of children with autism seek toys that are not only entertaining but also educational, these toys are categorized under the skills they help teach and needs they help meet, such as gross and fine motor, calming, sensory, and social skills.

In gift giving, parents often need to think outside the box because our kids have unique interests and needs. When we find the right gift for our kids, we like to share those ideas with others who might also benefit from our fortunate finds. For example, Alex’s interest in astronomy and meteorology led me beyond books to three gifts that play essential roles in his daily/nightly living and are as important to his bedroom as the furniture. For example, Moon in My Room by Uncle Milton (available at many stores and online) hangs on the wall across from his bed. Using a remote control, he can click on various phases of the moon to light up the battery-operated moon. With an automatic shut-off device, the moon acts as a night light he turns on when he goes to bed but turns off on its own about the time he falls asleep. I think Alex also likes Moon in My Room because it reminds him of one of his favorite childhood bedtime stories, Goodnight Moon. Nonetheless, this Christmas gift continues to be a big hit with him.

After trying various star projectors that illuminate Alex’s ceiling with stars, we finally found one that doesn’t burn through batteries and bulbs quickly. The Vicks Starry Night Cool Moisture Humidifier runs on an electric plug and projects color changing stars on the ceiling with or without the cool mist humidifier. In the winter, the humidifier does double duty by providing moisture for the dry air and entertainment at night with the colorful stars.

Along with astronomy, Alex also has a keen interest in meteorology, and we have gone through a variety of weather stations over the years. A few years ago my brother found a terrific colorful weather station as a Christmas gift for Alex, and it’s one of his prized possessions. Sitting on his bedroom dresser, Alex checks it first thing in the morning and right before he goes to bed, as well as multiple times throughout the day. Alex likes knowing the current weather, indoor and outdoor temperatures and humidity, and the daily high and low data. In addition, this weather station shows the current time and date, two vital pieces of information for Alex. On this small screen, Alex has most of the information he thinks he needs to know every minute of the day. Needless to say, it was a perfect gift for him.

Another great source of entertainment and education, card games by Gamewright, which are available in many stores and online, can teach children and adults many valuable skills. Simply handling the cards helps develop fine motor skills, playing games teaches turn taking and other social skills, and the Gamewright games often address language skills. On Black Friday, I found various Gamewright card games on sale at the Kohl’s website that I thought would be fun and help increase Alex’s social and language skills. For example, Fitz It has the players name objects the fit the descriptions on the game cards, such as naming an object that “comes in a box” and “fits in a blender.” In Think ‘N Sync, players try to match answers to a given prompt, such as naming an ice cream flavor or a sport with halftime. This strikes me as a good way for people with autism to realize that other people may think differently than they do. In the Over Under Game, “The Game of Guesstimates,” players make their best guess and then check the correct answers to see if they were over or under in their estimates. For example, one of the six hundred questions is “How far away is Pluto?” This kind of trivia involving numbers is right up Alex’s alley, and he will probably memorize the answers, making him an even tougher opponent when we play along with Jeopardy every weekday.

Speaking of Jeopardy, for those who love game shows, as Alex does, Jeopardy and Wheel of Fortune have online merchandise stores. Last year, I found a Jeopardy baseball cap for him on their site, and he now wears that hat whenever he watches the show. I believe it’s his thinking cap. This year, I found a similar one for Wheel of Fortune so that he can wear that cap when he’s watching Pat and Vanna and contestants solving puzzles every night.

While finding gifts our children will enjoy and perhaps even use to learn important skills can be tricky, especially when they have autism and unique interests and needs, the Internet has made Christmas shopping much easier. The availability of helpful search tools and parents sharing valuable tips makes shopping for our kids less stressful. With Cyber Monday tomorrow, many online stores will offer discounts and my personal favorite––free shipping––so that parents can not only find gifts for their beloved children but also save some money, as well. Until the gift of healing arrives, we search for those gifts that help our children learn and, more importantly, bring them joy.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” Matthew 7:7

Sunday, November 19, 2017

National Family Caregivers Month

 
November is National Family Caregivers Month, and for many parents of children with autism, round-the-clock caregiving continues day after day, month after month, and year after year––long after those children become adults. Because society is not prepared to deal with the thousands of adults with autism who require special care, the vast majority of these adults with autism depend upon family members to take care of them. Those adults with autism unable to perform daily living tasks independently, such as grooming and preparing meals, rely upon family caregivers to meet those critical basic needs. Although support personnel, including therapists and respite care providers, offer assistance, the bulk of care falls upon family to assure that the adult with autism is kept safe, happy, and content.

The Caregiver Action Network provides a helpful guide online, “10 Tips for Family Caregivers,” that may assist parents caring for their children with autism. [To read this article, please click here.] These excellent suggestions are summarized as follows:

1.  Seek support from other caregivers.

2.  Take care of your own health

3.  Accept offers of help and suggest specific things people can do to help you.

4.  Learn how to communicate effectively with doctors.

5.  Take respite breaks.

6.  Watch out for signs of depression and don’t delay getting professional help.

7.  Be open to new technologies that can help you care for your loved one.

8.  Organize medical information so that it’s up-to-date and easy to find.

9.  Make sure legal documents are in order.

10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Two of these tips deal with organization, specifically organizing medical information and legal documents, and I have found this to be very important. I have a portable file box organized with important documents dealing with insurance, medical information, Social Security, and other paperwork for Alex we may need. When we were recently successfully pleading our case to keep him on our family health insurance policy, finding necessary documentation was simple because I had all of this information easily accessible in the file box.

In addition, I have organized two portfolio folders of information: one for his services, such as behavioral and music therapy and respite care, and one for medical information. These folders are very helpful during quarterly meetings with his support staff and whenever we take him for medical tests or doctor appointments. In the medical folder, I keep updated lists of his medications and supplements, as well as a list of all of his health care providers and their addresses and phone and fax numbers, which comes in quite handy. Also, I keep a copy of his legal paperwork naming us as Alex’s legal health care representatives, which has proven extremely valuable over the past few years so that we have legal power to make decisions regarding Alex’s health care and to discuss medical issues with his doctors now that Alex is an adult. Of course, the tip about communicating effectively with doctors is also critical because we must advocate for our children so that they get the best health care possible. Often, this requires medical research ahead of time so that we know as much as possible about our children’s condition. Furthermore, many doctors do not know much about autism, and as parents, we may need to teach them things they never learned in medical school to ensure our children receive proper medical care.

Along with organization, seeking help is another common theme in this list of useful suggestions. Finding others who are in similar situations is valuable, not only because they can provide empathy, but also because they often can offer excellent suggestions and recommendations. When Alex was younger, I belonged to two online parent support groups where I learned a great deal about autism and developed friendships with autism moms that have lasted through the years. Currently, I belong to three Facebook groups for parents of special needs children who live near me, and we often share ideas, recommendations of professionals, and tips to help each other care for our kids.

While accepting offers of help is a great idea, it’s one that I am personally not good at doing. Never wanting to bother other people and being too proud to ask for help, I try to be as independent as I can. However, I am thankful that my husband and mother are incredibly supportive and willing to step in if needed. Recommending that caregivers suggest specific things others can do to help is a terrific tip because people often want to help but don’t know what to do. While parents may not feel comfortable having others watch their children with autism, friends and family could help by running errands, picking up groceries, or even simply praying for them. If good respite care is available, parents can use this resource to give themselves a break from caregiving and to allow their children to engage with a caregiver other than their parents.

Another aspect of help is new technology. One of the most valuable newer devices is the iPad, which offers many apps useful to people with autism. Some of these allow nonverbal children and adults with autism to communicate easily for the first time, which is valuable for them and their caregivers. Getting Alex an iPad Mini for Christmas a few years ago was one of the best gifts we ever gave him. He frequently listens to music on it, which relaxes him, and he satisfies his curiosity by looking up dozens of questions every day. Moreover, he can entertain himself by watching videos he enjoys and by playing games.

Finally, another theme found in these tips is caregiver self-care. We need to take care of our children’s parents so that we can be physically, mentally, and emotionally at our best to take care of them. Knowing that I may need to care for Alex for a long time, I have been making changes to ensure I’m as healthy as I can be. Certainly, caregiving is quite stressful, and at times, I have needed to deal with my own anxiety so that I don’t increase Alex’s anxiety. By eating healthier, taking vitamins, getting as much sleep as possible, making time to do things I enjoy, and finding emotional strength through my faith in God, I am better equipped to take care of Alex. Although I admit that I have trouble following the last tip about giving myself proper credit because I am my own worst critic, I am blessed that Ed and my mom constantly encourage me with praise for my efforts. When I doubt how I’m handling a situation regarding Alex’s care, they reassure me that I’m doing the right thing. Perhaps one day I will see myself as competent as they assure me I am.

Caregiving for a family member requires energy, devotion, and unconditional love; however, organization, help from others, and self-care can make this crucial task easier. While other people may not realize how much we do in caring for our loved ones on a daily basis, we know that we are serving God as we love and care for those He has entrusted to us.

“Care for the flock that God has entrusted to you. Watch over it willingly, not grudgingly––not for what you will get out of it, but because you are eager to serve God.” 1 Peter 5:2

Sunday, November 12, 2017

Proclamations

 
Since autism significantly impairs Alex’s speech, he tends to speak quietly and hesitantly, unsure of his ability to communicate effectively. We often have to ask him to repeat what he has said––sometimes because we didn’t understand him and other times because we didn’t hear him. However, sometimes he suddenly bursts forth with proclamations of something he wants to tell us––observations on life, patterns he’s noted, or some fact he finds especially interesting––announcing these statements clearly and confidently.

For example, yesterday I was showing Alex a large foam cut-out of a hand my dad had gotten for him at a recent Valparaiso University basketball game. While most so-called foam fingers have only the index finger raised as a symbol of being number one, this hand had two fingers raised. When I asked Alex if he knew why it had two fingers raised instead of one, he immediately explained that the fingers were in the shape of a V for Valparaiso.

Then I could tell that his mind was processing something from our discussion. Suddenly, he announced, “V is a somewhat rare letter.” As I showed interest in his statement, he went through all the letters of the alphabet, informing me which letters were “common,” “rare,” and “somewhat rare.” Clearly, he has watched enough Wheel of Fortune to determine the commonality and rarity of each letter of the alphabet as he confidently ascribed a value for every letter from A-Z. Later, he informed us, “There are about four thousand words that start with V.” I’m not certain whether he knew this fact or had looked it up online, but he wanted to share this bit of trivia with us.

Another announcement Alex likes to make is his assessment of people’s voices on television. He is fascinated by people’s voices, especially if they are deep or high pitched. Moreover, if he finds a person’s voice doesn’t meet with his expectations, he feels a need to share that anomaly with us. For instance, he’ll come running to tell us excitedly, “It’s rare for a kid to have a deep voice!” Lately, he has a fascination with older people and what he has dubbed “old man’s voice” and “old lady’s voice.” However, he’s even more fascinated when elderly people don’t have the qualities of the “old man/lady voice.” The other day, he enthusiastically shared that he had seen on television “some 93-year-old man who didn’t have an old man’s voice.” I’m not sure who would have been happier, Alex, who saw the old man with a young man’s voice, or the 93-year-old who had what Alex deemed was a young voice.

In addition to announcing his observations about the world around him, Alex also likes to proclaim changes he has noted in himself. Not surprisingly, he measures time by his own voice changes, telling us, for example, that in 1993, he had a “young voice.” (Previously he referred to his childish voice as a “little voice,” but has since changed the wording. If we use the phrase “little voice,” he will correct us, making sure we use the new lingo of “young voice,” which he now has decided is more accurate.) As with the “old man/old lady voices,” he will often come running to find us when he’s watching television and hears a particular date to announce the status of his voice at that particular year in time. Probably because we respond to his enthusiasm with praise, happy that he wants to tell us something, he never tires of making these announcements.

After bumping his knee last week and winding up with a bruise, Alex realized that certain motions were painful and compensated by favoring his other leg. So that he won’t obsess on an injury, we keep an eye on the healing without saying much to him. Perhaps because we don’t talk about whether it still hurts or not, Alex will happily inform us when he notices he is feeling better. The other day, he must have recognized that his bruised knee had improved because he suddenly exclaimed, “The knee is all better now!” Not only was I glad the pain had subsided, but also that he could clearly express his joy that he noticed his knee had returned to normal.

Maybe the most out-of-the blue announcement he’s made lately came yesterday evening when he proclaimed: “We can go to Chesterton now!” Chesterton is the nearby town where Alex has enjoyed going to restaurants. However, since his loss of appetite started in May, he hasn’t wanted to go to restaurants because he hasn’t felt like eating as much as he used to. The thought of going to a restaurant, which used to be one of his favorite things to do, seemed to bring anxiety, so we haven’t been to Chesterton for a while. We’re hoping that his proclamation yesterday means that he’s willing to try dining out again and perhaps he senses that his appetite is improving. Fingers crossed and prayers said, we’re hopeful that Alex’s announcement means that he is getting better. Of course, we know that moving forward will take some time and patience, but we see his announcement as a good sign that he is making progress. We’ll know better once we make that return trip to a Chesterton restaurant.

Although people with autism stereotypically do not seem to care about sharing interests or enjoyment with others, Alex clearly likes to share what he’s seen, heard, and learned. Since approximately half of people with autism are nonverbal, we know how blessed we are that Alex can speak and tell us what he’s thinking. Moreover, we’re delighted that he wants to interact with people and share his thoughts, feelings, and ideas. By encouraging him with enthusiasm and praise, we hope that he continues to develop his language and social skills, knowing that he has a unique perspective and unbridled joy to offer those who are willing to listen to him.

“I will tell everyone about Your righteousness. All day long I will proclaim Your saving power, though I am not skilled with words.” Psalm 71:15

Sunday, November 5, 2017

Waiting Time

 
Around here, we live by the clock, the calendar, and the schedule. For Alex, running on time, knowing what day it is, and being prepared for activities ahead are crucial to his daily existence. If not for the numerous clocks throughout our house and his wristwatch, calendars easily accessible, and his daily schedule posted on the refrigerator, Alex would become extremely anxious waiting for whatever was next. To be honest, he gets that from me, who also thrives on the comfort of clocks, watches, calendars, and schedules.

In fact, we can tell when Alex is more anxious because he will consult his beloved time keepers more often, making certain that everything is running on time and making sure he knows what’s happening next. Unfortunately, life doesn’t always go exactly as planned––people may run late, appointments may change, and a power outage might require the resetting of the electric clocks.

Sometimes reality doesn’t jive with our expectations, which can lead to frustration and disappointment. For example, as I changed our calendars from October to November last week, I realized that Alex’s loss of appetite has now lasted six months. When he began eating fewer foods in May and self-limiting his diet that had always been excellent to only a few items, I thought this phase would last only a few days, maybe a few weeks.

By the end of May, Alex still had not returned to his usual varied diet and healthy appetite, so we took him to the doctor, who diagnosed him with thrush. Certainly, the pain thrush can cause in the mouth and throat would explain Alex’s sudden resistance to eating, and we thought that the anti-fungal medication would clear up this yeast overgrowth and make him want to eat again within a few weeks.

However, this bout of thrush has been a doozy, and two more doctor visits and more rounds of anti-fungal medication were warranted. So tenacious is this yeast overgrowth that his doctor has him on maintenance doses of medication twice a week through February. Even though his mouth looks better and the secondary indicators of yeast overgrowth––dandruff and acne––have improved, we still occasionally see some behaviors associated with thrush, namely irritability and increased anxiety. Moreover, Alex still hasn’t returned to his normal eating habits.

Currently, he drinks smoothies made with Rice Dream nondairy ice cream, coconut milk, strawberries, and protein powder for breakfast. For lunch he eats applesauce and raspberry coconut milk yogurt. For dinner he eats applesauce and scrambled eggs with spinach and herb seasoning. For an evening snack he drinks a lemon Italian ice and another strawberry smoothie. While this makes meal planning for him simple since he’s basically eating the same things he’s eaten for months, we would prefer that he return to his previous diet where he ate nearly everything except popcorn. Moreover, one of his favorite things to do was to eat at various restaurants, but his limited diet has kept him from this favorite family pastime.

On Wednesday, realizing that another month has passed without Alex’s appetite improving, I felt frustrated, disappointed, and overwhelmed––three emotions I try to avoid. Why isn’t Alex’s appetite back to normal after all these months? Why won’t this thrush go away for good? Why does everything seem to take so long? What else do I need to do to make him better? As these questions raced through my mind, I could only answer the last one. I remembered the phrase I hear Alex say so often: “Wait and see.”

As Alex’s mom and advocate, I constantly seek ways to make him and his life better. However, sometimes I must remember that despite my need to control and offer helpful advice, God has this all figured out without my well-meaning help. Unlike me, God doesn’t need to read all the latest research in autism; He created the universe. While I’m impatiently waiting, God has already set the appointed time. What God has planned for Alex is greater than anything I could imagine, and healing will allow Him to show His glory. I just need to have the same trust and faith in Him that Alex does.

While six months can seem like a long time when waiting for something to happen or change, in reality, it’s not that long. Perhaps another six months will pass before Alex feels like eating more foods; we’ll have to wait and see. Perhaps tomorrow he’ll wake up and ask for his favorite food, shrimp, and devour it happily after not having eaten it for more than half a year. I don’t know. As we change our clocks back to Standard Time today, I’ll be praying that, like Daylight Savings Time, this time of illness was a summer thing to be put behind us. We will wait and see.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1

Sunday, October 29, 2017

Employment and Autism

 
In the past few weeks, Ed and I have been trying to make certain Alex remains on our family health care insurance policy after he turns 26 in December. Because he has autism, he should easily qualify as a disabled dependent eligible for continued coverage. After various phone calls, emails, and a marathon meeting Ed had with his employer’s human resources department head, everyone agrees that Alex should be able to remain on the policy with enough proof provided.

Digging into my carefully organized files, I easily found four documents indicating the nature and scope of Alex’s disability. All of these reports came from assessments made after Alex turned eighteen, so they were recent and addressed his disability as an adult. Despite submitting the report from a psychiatrist, another from a psychologist, the confirmation from Social Security that he qualifies for disability payments under federal guidelines, and a detailed report from the state of Indiana explaining the impact autism has on Alex’s daily life thereby qualifying him for state autism support services, the insurance company needed another form completed.

For the top half of the form, we provided typical information regarding name, address, birthdate, and policy number. However, the focus was clearly upon Alex’s employment history, which is nonexistent because of the obstacles autism presents for him. The bottom half of the form was to be completed by his primary care physician and focused on confirming his disability diagnosis and its impact on potential employment. Thankfully, Alex’s doctor clearly and concisely explained why Alex is not able to hold a job now nor in the foreseeable future. Noting impaired language skills and limited daily living skills, his doctor made evident Alex’s weaknesses that currently make holding a job impossible. Hopefully, this completed form will satisfy the insurance company’s requirements.

While we would certainly prefer that Alex be able to live independently and pursue a meaningful career, we know that he relies upon us to take care of his needs, including making sure that he has good health insurance. He is not alone in being an unemployed adult with autism, however. Statistics indicate that only 58% of adults with autism who have completed high school ever wind up holding paying jobs. Even those who do successfully hold jobs often have problems with organization and dealing with co-workers. This trend may be starting to change, though.
An article written by Neil Parmar published online last week in Entrepreneur entitled “Why Microsoft, Chase and Others Are Hiring More People With Autism” touts the value of employees with autism. [To read this article, please click here.] Specifically, people with autism often bring creativity, attention to detail, and technical skills that employers value, according to the article. In fact, approximately fifty U.S. companies currently have a majority of employees with autism.

A leader from accounting and professional services firm EY, Hiren Shukla asserts the value of workers who have autism, stating, “We’re not doing this as a diversity and inclusion program; it’s actually filling a very specific business need.” This sentiment is echoed by banking company J.P. Morgan Chase that has indicated traits found in autism are “ideal assets in the workplace, particularly in industries like tech and engineering.” Moreover, software corporation Microsoft describes workers with autism as an “untapped pool of talent.” This recognition of the skills employees with autism can bring to their companies gives hope that more adults with autism can find meaningful employment that benefits them and their employers.

Despite their unique talents, people with autism may require additional support to be successful in their jobs. This article describes the development of social service agencies and nonprofit organizations to help train and place adults with autism in jobs and to provide ongoing support. In addition, state vocational rehabilitation agencies can assist adult employees with autism by providing job coaches and arranging transportation to and from work. Some innovative companies have recognized the special needs of their employees with autism as well as their value and offered support in the forms of job coaches and financial planners, and even giving nutritional advice. This genuine caring for their employees should be a model for other companies willing to hire adults with autism.

Although the current unemployment figures for adults with autism can be discouraging, the success some companies are having in hiring these people with a unique skills set gives hope that more adults with autism will be able to find jobs someday. As more and more children with autism become adults with autism, society needs to be more creative and find ways to make them economically independent and valued members of the workforce. Perhaps someday parents won’t have to fight to keep their adult children on their health insurance plans because they are unemployed due to their disability.

For Alex, I have hope that instead of focusing upon his impaired language, fine motor, and social skills, someday he will be valued for his phenomenal memory; his keen skills in math, reading, and proofreading; and his inquisitive mind. Even better would be that he is recognized for his earnestness, his enthusiasm for things he loves, and his sweetness that endears him to those who see past the obstacles autism has imposed on him to the special soul God created him to be.

“Work willingly at whatever you do, as though you were working for the Lord rather than for people.” Colossians 3:23

Sunday, October 22, 2017

Pet Pat Phrases

 
“You’re old enough to have a driver’s license!” Alex yelled at me last week. As usual, he reversed his pronouns—a common feature in the speech of people with autism––saying “you’re" when he actually meant “I’m.” What was unusual was that he was raising his voice to let me know he was upset; typically Alex is fairly easygoing and speaks softy. Clearly, he knew what he needed to do to get my attention. Because he has always struggled with speech, Alex has certain favorite pat phrases he uses to communicate beyond basic conversation. While these often repeated sayings may not have much meaning on the surface, we have learned that the words carry deeper intent.

For example, we know that Alex is always on the lookout for numerical values to quantify people and objects. When he discovers patterns, he is elated and happily announces his findings to us, such as, “Our phone number is a prime number!” Not content to make this point only once, he often repeats this discovery. In fact, every time we have to give our phone number, he reminds us that it is prime. Moreover, his enthusiasm never wanes, no matter how many times he reminds us of this mathematical fact. Because he is so happy with himself about this remark, we encourage him with praise, noting how clever he is to have figured out the connection.

Even better than getting praise for finding prime numbers is the noting of rare instances. Alex loves anything he perceives to be a rare occurrence, and he enthusiastically announces his discoveries to us. For instance, he gets excited if a house number has five digits and will say, “That’s very rare to have a five-digit address!” If he’s watching television and two consecutive commercials are the same, he’ll tell us with awe, “It’s extremely rare to have two of the same commercial in a row!” I’m not certain that these instances are as “rare” as Alex thinks they are, but his enthusiasm for noticing them and talking about them is contagious, and we can’t help but act equally excited when he tells us. Obviously, he finds great joy in instances he thinks are not ordinary, and he wants to share them with others.

Once or twice a day, he treats us with the following announcement: “It’s rare for a person to have a two-digit weight!” What he’s trying to say in his inimitable way is that most adults weigh at least one hundred pounds. In addition, he knows that it’s not polite to discuss people’s weights, so he’s trying to avoid being rude by being so general. However, we know the real story behind this daily comment. He has seen a commercial with petite NASCAR driver Danica Patrick, whom Alex knows weighs less than one hundred pounds because he did a Google search to find out how much she weighs. I suppose he thinks this is a polite way to discuss her weight, and probably many women would be as happy to weigh two digits as Alex is to talk about it.

In addition to noting what famous people weigh, Alex also pays close attention to their voices. If he hears someone singing with a raspy voice, he often asks, “Is that Bob Dylan?” If he hears a song by Elvis Presley or Johnny Cash, Alex makes the offbeat comment, “Elvis had a deep voice when he died” or “Johnny Cash had a deep voice when he died.” Sometimes to make his point, Alex will share these statements by saying them in a deep voice, which makes them even creepier. His fascination with deep voices also shows when he hears kids on television whom he thinks have deeper voices than they should at their ages, and he will often comment, “It’s rare for kids to have deep voices.”  On the other hand, he also notes voices of older people and remarks if they have “an old man’s voice” or “an old lady’s voice.” Since we have told him not to say those comments in front of older people, he confines his judgments to only those he hears on television. However, he has decided that it must be complimentary if elderly people don’t show their ages in their voices, so Alex enthusiastically comments, “He doesn’t have an old man’s voice. That’s very rare!”

As Alex listens to people’s voices, he often makes comparisons evident in questions he asks. For instance, if I speak in a higher pitch, he thinks I’m my sister and will ask, “Is that Aunt Tammy?” If I speak very sweetly to him, he thinks I’m my mom and will ask, “Is that Nanny?” When I tell him it’s just me, he frankly seems a little disappointed. Because my dad and brother sound quite a bit alike in the way they speak, Alex is often confused about who is who, based on their voices. He often asks, “Is Uncle Freddy Grandpa?” While he knows they are two different people, his question clearly shows that their voices confuse him about who is who. The most amusing comparison he makes is when he sees a local commercial for an attorney whose voice reminds him of my brother-in-law, and he asks, “Is Peter Francis Geraci Uncle John?”

One thing we have learned about the repeated phrases and questions Alex uses is that they often reveal hidden meanings. For example, he frequently asks questions about the weather. Even though he has a strong interest in meteorology, these questions go beyond discussing a favorite topic, we have learned. When Alex asks if it’s windy or rainy, he’s concerned about the noise that the wind or rain will make or perhaps they may develop into a stronger storm, like a tornado. Before he takes a bath, he nearly always asks if there are thunderstorms––even on sunny days––because he knows it’s not safe to bathe during a storm, and he fears that his beloved bath could be delayed by the weather.

As Alex has gotten older and his language his improved somewhat, he has learned that he can convey not only his observations but also his thoughts and feelings. While these phrases may be not as clear as they could be, we can usually figure out his intended meaning. When he asks if he can do something, he usually means that he wants to do that activity. On the other hand, if he adds “or not” to the question, he doesn’t really want to do that activity, but he’s testing to see if we would allow him to do so. We know this because if we ask him if he wants to do that, he usually tells us no.
In his cry of frustration the other day about not being able to drive, we knew what was wrong because we have heard him complain about this before. He wanted to go someplace, and we told him we would take him later. Knowing that most people his age can drive bothers him because he realizes that he lacks the independence he should have. As parents, we understand his upset because we, too, hate that autism has prevented him from doing typical things. We wish we could hand him the car keys, tell him to be careful, and send him out into the world to do what he wants. However, we are grateful that unlike many adults with autism, Alex can speak and share what he’s thinking. As we pray for his continued progress, we hope that someday Alex might be able to say clearly whatever he wants to say and to drive wherever he wants to go.

“Look!” he said. “The people are united, and they all speak the same language. After this, nothing they set out to do will be impossible for them!” Genesis 11:6