'Tis the Season

Alex loves the holiday season and eagerly anticipates this time of year every year. This week, we enjoyed a pleasant Thanksgiving dinner with my parents that he helped me cook. Yesterday morning, we were able to get together for breakfast at one of Alex’s favorite restaurants with my siblings and their families and my parents. Although being in a crowded restaurant in a group of fourteen people could have been daunting for Alex, he handled the situation quite well and enjoyed being with his grandparents, parents, aunts, uncles, and cousins.

After about an hour, however, I noticed the subtle appearance of the dreaded “claw.” When Alex is overwhelmed or not happy about something, he bends his wrist down into an acute angle and bobs it up and down to let us know he’s not pleased. I was pleased that he waved the claw under the table so that only I could see it. Using the techniques that I have learned from his behavioral therapist, I told him that I knew he was upset and asked if I could do anything to help him. He waved his claw again to make sure I had seen it and then quietly told me, “It’s too hard to remember the haircut calendar.”

The haircut calendar is Alex’s go-to excuse that simply means he’s overwhelmed. He used to tell us when he was upset that he “never wanted to use the typewriter again!” No one was making him use a typewriter; this was just something he blurted in frustration. However, we know better than to minimize his anxiety, so I calmly told him that he had just had a haircut two weeks ago, which seemed to calm him a bit. I also gave him the option of going home––not as a punishment but as a way to escape a situation that may be upsetting him. He insisted that he wanted to stay, and he was able to use calming skills so that he was able to snap out of whatever was bothering him and enjoy the rest of the time. While I wish Alex didn’t have to suffer from anxiety, I’m happy that he has learned to deal with being upset without causing a scene and that he can calm himself instead of escalating into a meltdown. This is a huge blessing.

Yesterday evening, I had to employ some calm down skills of my own. Alex needed to have blood drawn for his regular six-month lab tests to make sure he is healthy and to check that his medication levels are appropriate. Thankfully, he never minds having blood tests, and lab technicians always remark on what a good patient he truly is. My anxiety was with the check-in clerk who was rather insistent that he needed to fast for ten to twelve hours prior to these tests. However, Alex does better in the evening when he is calmest; therefore, we always do the testing in the evening. Although I explained this to the clerk, she made some remark about the tests being inaccurate and told me that she would tell the lab technician that he hadn’t fasted.

Even though I knew I was doing what was best for Alex, I somehow felt as though I was being chastised and wondered if I would get more flack from the lab technician. However, we soon discovered that the warm and friendly lab technician was an autism mom herself who completely understood why we did not have Alex fast prior to the test. She explained that she never made her son fast before tests, either. I prayed for a sympathetic lab technician and was given an empathetic one who told us to ask specifically for her by name whenever Alex needed a blood draw. Not only did she enthusiastically praise him, but she also gave him apple juice as a reward for his bravery. As we chatted with her afterward, we were thankful to have someone who completely understood our situation. That was a huge blessing.

Earlier in the week, Alex had been talking with his behavioral therapist who was asking him about his favorite times of the year. He explained that his favorite month was December because Christmas and his birthday are in December. He went on to tell her that Christmas is his favorite holiday. When she inquired why, he immediately responded, “Because it’s Jesus’ birthday!” Of course, I was delighted by his answer, as was she.

As I put up Christmas decorations over the past few days, I’ve been trying to remember to savor the effort instead of resenting the extra work. I have decided that I’m going to do things that bring joy. My mom had asked Alex what his favorite decorations were, and he told her, “The cousins’ stockings.” Ironically, I had not yet put up the dozen small stockings with his cousins’ names on them, so he was remembering them from last year. In fact, I was debating about putting them up at all because it was one more task to do. However, once I discovered that they were his favorites, I immediately hung the stockings on our stair railing because they bring Alex joy, which brings me joy.

After I finished hanging our huge assortment of ornaments on our Christmas tree yesterday, Alex carefully surveyed my work, smiling as he studied the ornaments. When I asked him what he thought and what grade he’d give me, without hesitation, he enthusiastically told me, “A+!” Certainly, that high praise made the effort worthwhile, but his joy was an even greater reward. Most of all, I’m thankful for my son who reminds me that the true importance of Christmas is finding joy and celebrating the birth of God’s son. What greater blessing could there be?

“You will conceive and give birth to a son, and you will name him Jesus. He will be very great and called the Son of the Most High. The Lord God will give him the throne of his ancestor David.” Luke 1:31-32

Thankful

 

As we celebrate Thanksgiving this week, we recognize all the blessings for which we are truly thankful. Although we have been through times when being grateful wasn’t always easy, we made sure to find something to appreciate about each day. Now that Alex is doing quite well, we make certain not to take these good days for granted and praise God for all He has done for us.

For good health, we are thankful. Not only have Ed and I been blessed with remarkably good health so that we can take care of Alex, but Alex is getting healthier all the time. The inflammation that has plagued him, as evidenced by acne, yeast overgrowth, and irritability, appears to be under control. His complexion is clear without needing acne medication, his appetite is good, he sleeps peacefully, and his mood is nearly always pleasant and upbeat. Praise God for these blessings!

For financial stability, we are grateful. Even though autism has brought about unexpected expenses, such as multiple therapies, nutritional supplements, and a gluten-free and dairy-free diet, all of which are needed to address various issues, we have always had plenty of money to pay for them. Even though we are both teachers, and I only work part-time so that I have more time to devote to Alex, our salaries have been more than enough to meet our needs. Now that Alex is an adult, he receives disability funding that allows him to receive additional therapies and support. Praise God for these blessings!

For Alex’s support team—his psychiatric nurse practitioner who manages his anxiety medications, his case manager who oversees his budgets and coordinates his services, his behavioral therapist who teaches him coping and social skills, his music therapist who helps his language skills and anxiety, and his respite care companion who engages him in conversation and allows him to enjoy a peer friendship––we are appreciative. Not only are all of them exceptional at their jobs, but they are also wonderful people who see the best in Alex and strive to make him better through encouragement. Along with us, they celebrate his accomplishments. Praise God for these blessings!

For the progress Alex has made that allows us to enjoy a “normal” family life, we are thankful. Now that we can go to sporting events, concerts, restaurants, stores, and parks, enjoying our time together as a family, we remember when Alex wasn’t able to do any of those activities and feel fortunate that he has learned to cope with his anxiety. For many years, we couldn’t go anywhere together, and now we engage in recreational activities almost daily. Praise God for these blessings!

For family and friends who have supported us and prayed for us, we are filled with gratitude. When we struggled through difficult times and felt overwhelmed, we knew that we had loved ones who cared deeply about us and our situation. We also appreciate those who understand that sometimes the seemingly small steps are in actuality great milestones for Alex. I am especially thankful for my parents who have been Alex’s greatest cheerleaders. For their unwavering faith in him and unconditional love for the three of us, they have more than earned the honor of having Alex name them first when he’s asked who his friends are. Praise God for these blessings!

For the grace of God who saw us through difficult times and for the healing of God who has made Alex better, we are overwhelmed with thankful praise. When we couldn’t see how things were going to work out, we knew that God had plans for our lives and trusted Him to arrange the details, which He did. When we didn’t know what to do, God guided us to the right choices and the right people who could help us. When we didn’t know how to reach Alex because he was filled with anxiety, God never let him go and kept him safe until the storm passed. During that time, Alex developed an unwavering faith and trust in God that carries him through life. Praise God for these blessings!

Not just on Thanksgiving, but every day, we realize just how blessed we are, especially when we see how far Alex has come and recognize all that we were given so that he could make great progress. Praise God for these blessings!

“I will give thanks to You, Lord, with all my heart; I will tell of all of Your wonderful deeds. I will be glad and rejoice in You; I will sing the praises of Your name, O Most High.” Psalm 9:1-2

Voting for Alex

 

The results of last week’s election in which Donald Trump was named the next President of the United States came as a shock to many people. As I discovered last week, I wasn’t the only autism parent quietly supporting the now President-elect. Just as others chose their candidates based upon issues of major concern to them, my primary focus in life is Alex. As a pro-Alex supporter, I wanted a President willing to address the issue of autism directly and one unafraid to question the role vaccines may play in autism. That candidate was Donald Trump.

In the CNN Republican Debate on September 16, 2015, Mr. Trump was asked about autism and his position on vaccines. He explained, “Autism has become an epidemic…Because you take a baby in, and I’ve seen it, and I had my children taken care of, over a long period of time, and over a two or three year period of time, same exact amount, but you take this little beautiful baby, and you pump­­––I mean, it looks just like it’s meant for a horse, not for a child, and we’ve had so many instances, people that work for me, just the other day, two-years-old, two-and-a-half-years-old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic…I’m in favor of vaccines; do them over a longer period of time, same amount, just in little sections. I think you’re going to have––I think you’re going to see a big impact on autism.”

Not only did Mr. Trump state without hesitation that there, indeed, is an autism epidemic, but he also firmly stood his ground on suggesting that the current vaccination schedule may be linked to autism. Moreover, he expressed concern for those families whose lives have been impacted by autism.

During that same debate, fellow Republican candidate and esteemed neurosurgeon Dr. Ben Carson noted, “We are probably giving way too many in too short a period of time.” As an admirer of Dr. Carson, I was pleased that he offered his trusted medical opinion as well as supporting Mr. Trump’s position regarding the need to revisit the current vaccine schedule.

Of course, the mainstream media had a field day, criticizing Mr. Trump and his comments regarding the potential link between vaccines and autism. For example, The Washington Post ran an article the day after the debate on September 17, 2015, entitled, “The origins of Donald Trump’s autism/vaccine theory and how it was completely debunked eons ago.” Similarly, the online magazine Slate posted an article on the same date with the title, “Donald Trump Uses GOP to Push Anti-Vaccination Myths.” Even CNN, the host of the debate, joined in the mocking on September 19, 2015, by posting an opinion piece on their online site written by a debate coach entitled, “Trump’s autism claim on vaccines is a disgrace.” While journalists jeered him, autism parents cheered him.

In contrast, his opponent Secretary Clinton made her stance on vaccines quite clear. In a Tweet by Hillary Clinton on February 2, 2015, this position is presented: “The science is clear: The earth is round, the sky is blue, and #vaccineswork. Let’s protect all our kids.” #GrandmothersKnowBest.” Comparing those who question vaccine safety to those who believe the earth is flat is nearly as demeaning as deeming Trump supporters as “deplorables.”

What was especially important to me is that Mr. Trump has not swayed in his concerns regarding the potential link between autism and vaccines over time. On December 29, 2007, long before he was a political candidate, autism mom Kim Stagliano praises him in her Age of Autism online article titled, “Brilliant Trump Revises Vaccine Schedule for His Son.”

In the article, Mr. Trump is quoted in an interview with Palm Beach Politics: “When I was growing up, autism wasn’t really a factor,” Trump said. “And now all of a sudden, it’s an epidemic. Everybody has their theory. My theory, and I study it because I have young children, my theory is the shots. We’ve been giving these massive injections at one time, and I really think it does something to the children.”

He went on to say, “When a little baby that weighs 20 pounds and 30 pounds gets pumped with 10 and 20 shots at one time, with one injection that’s a giant injection, I personally think that has something to do with it.”

Furthermore, he explains how he and his wife decided to handle vaccines with their own son, “What we’ve done with Baron, we’ve taken him on a very slow process. He gets one shot at a time then we wait a few months and give him another shot, the old-fashioned way. But today they pump the children with so much at a very young age. We do it on a very, very conservative level.”

To me, this says that Donald Trump is bold enough to question the establishment, especially when his child’s well-being is at stake. Moreover, he clearly has compassion for those families who have been affected by autism and is willing to look into potential causes.

President-elect Trump, many autism parents supported you because you unwaveringly expressed the concerns we have long held. You have the opportunity to change the course of the autism epidemic by launching investigations into how the current vaccine schedule affects children. We’re counting on you to “Make America Great Again” by helping us find ways to make our children healthy again and to prevent other children from having to struggle with autism. Please don’t let us down.

“For where your treasure is, there your heart will be also.” Luke 12:34

Alex's Two Words About Autism

 

Recently, I read an inspiring blog entry published exactly a year ago today from one of my favorite autism mom writers, Emily Colson, the author of Dancing with Max, a memoir about her son who has autism. Not only is she a talented writer, but I also admire her strong faith in God and her ability to find humor in the midst of autism chaos. Most of all, I understand her unconditional love for Max, who, like Alex, is in his mid-twenties, but retains a childlike innocence.

In her essay, “Max’s Two Words About Autism,” she describes her enthusiasm about an upcoming appointment with a new doctor who has a daughter with autism. [To read this essay, please click here.] Sharing this information with Max, she notes, “The word autism has been a part of the conversation in our home since Max was very young.” Similarly, we have always been open with Alex about autism and how it affects him, not wanting him to think we have been keeping secrets from him. Moreover, we never want him to feel ashamed that he has autism, so we have candidly told him everything we know about the condition. Believing that knowledge is power, we have wanted Alex to gain power over a condition that has hindered his speech, fine motor skills, and social interactions.

Wondering what Max would say about autism, Emily Colson explains, “Thoughts of this journey and the bittersweet sound of the word swirled in my mind. None of this has been easy, yet God has made it beautiful. Autism has been the fertile ground in which God has grown my faith.” Brilliantly, she has described the duality of life with autism: the struggles and the triumphs. I know that the challenges of raising a child with autism has taught me greater patience and compassion and developed a stronger faith in God than I would have had without those challenges.

When Emily Colson asks her son to describe autism in two words, he tells her, “Love. Peace.” Clearly, he has found the good, despite the struggles of autism. Curious as to what Alex’s impressions of autism are, I asked him the same question Max was asked, “Can you tell me two things you want someone to know about autism?”

To be honest, I thought that Alex would respond with the phrase he uses when either he doesn’t have an answer or doesn’t want to give an answer: “What would be good?” However, I knew that if I wanted his honest opinion, I would need to force myself not to lead him with my own editorial comments. To my surprise, he immediately answered, “Mercury. Anxiety.”

While Max’s answers were more heartwarming, Alex’s answers were candid and revealed his understanding of what he has faced. He knows that he was diagnosed with mercury poisoning when he was younger, probably the result of the preservative thimerosal in the vaccines he received as an infant and young child. Moreover, he remembers being treated for the accumulation of this neurotoxin through chelation therapy for three years and perhaps even remembers our joy as each subsequent test revealed his levels of mercury decreasing. In addition, he knows that he cannot have shots that contain thimerosal, such as flu shots, and he must have composite instead of mercury-containing amalgam fillings in his teeth. Just as he knows to avoid glutens and dairy products because he has sensitivities, he realizes that mercury is harmful to him, too, and must be avoided.

In addition, Alex recognizes how anxiety affects his mental, emotional, and physical states. He realizes that at this point in his life, medication helps keep him calm so that anxiety does not escalate to levels that overwhelm him. Also, behavioral therapy and music therapy the past few years have taught him coping skills so that he can take control of his emotions and deal with situations he finds difficult. Most of the time, he copes very well. However, anxiety will still arise at times, and we find ways to help him deal with it constructively. For example, this morning, his world was rocked by the time change. Even though he has known for weeks about the switch from Daylight Savings Time back to Standard Time, the fact that his beloved clocks were wrong made him nervous. Until we changed the clocks with him this morning, he struggled to control his nerves, which gave him away by the adrenaline rush that made his hands and voice shaky. Although he deals with anxiety better now than he did in the past, this aspect of autism still plagues him daily.

While I would take away all of the struggles Alex has had to face through the years in a heartbeat if I could, I believe that he is also a better and stronger person because of what he has faced in life. As I watch him tenaciously and patiently work at tasks most people would abandon in frustration, I am thankful that God has equipped Alex with what he needs to overcome the challenges autism presents. Every night as I listen to Alex’s earnest prayers and requests to bless other people, I am grateful that God has given him a pure heart and strong faith that allows him to believe everything will be all right. As the scriptures describe, God has given us “beauty for ashes,” and we feel blessed that Alex has overcome many obstacles so that he can enjoy life to the fullest.

“...He will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair.” Isaiah 61:3