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

"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

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

"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

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