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

Eleven Random Things

1.  One of Alex’s new quirks is to blurt out types of foods suddenly and randomly. He’ll be sitting quietly, seemingly in deep thought, and suddenly say, “Mango,” or “Polish sausage,” or “Cupcakes.” Apparently, he spends a great deal of time thinking about food. If we ask him if he’s hungry, he’ll usually tell us that he’s not, he’s just thinking about food. Finding this random chain of thought interesting, I thought I’d similarly share some random things that have occurred to me this week, most of which have nothing to do with food—I’ll leave that to Alex.

2.  The one random thing that does have to do with food is Alex’s new love of “porridge.” I had mentioned in a recent blog entry that Alex has rediscovered the story Goldilocks and the Three Bears, which he likes me to read to him again. I think he’s amused that I can do three different voices for the bears—Daddy Bear’s deep voice, Mommy Bear’s medium voice, and Baby Bear’s squeaky voice. Apparently wanting to emulate the bears and Goldilocks, he decided that he would like to eat porridge, which took some research on my part to find what porridge is and whether he could eat it on his gluten-free, milk-free diet. The closest approximation I could find for porridge is a gluten-free oatmeal made with water instead of milk. While I wouldn’t touch the mushy stuff with a ten-foot pole, Alex seems to think he has a real treat in porridge, one of his new favorite foods.

3.  The past few weeks, Alex has taken up sleepwalking, which is a bit disconcerting because awakening to a six-foot-tall, half-asleep young man prowling in the hallway in the middle of the night is frankly creepy. Since we don’t want him tumbling down our rather steep stairs to the main floor, Ed and I have been sleeping lighter, listening for Alex to open his bedroom door and start his nightly jaunts. Fortunately, he’s docile and cooperative about being led back to bed, and all three of us are able to go back to sleep quickly afterward. We’ll just be glad when he gets past this phase.

4.  Another recent phase is Alex’s renewed interest in the Disney movie Shrek. When he was younger, Shrek was his favorite movie; in fact, I think Shrek is one of the few movies, other than the Disney cartoons that he watched when he was little, that he has watched in entirety and repeatedly. Perhaps feeling nostalgic, Alex has watched the Shrek movie trailers on You Tube many times the past few weeks. Every time, he finds them really funny, as if he’d never seen them or heard the jokes before. I think it’s sweet that just watching the short clips brings a smile to his face; how nice that something so simple makes him so happy.

5.  Harkening back to his younger days, Alex has also been asking about his childhood doctor. Although she retired a few years ago, Alex often mentions her because he felt a close bond with her during the nearly ten years she took care of him. Last month, I heard the sad news that she had passed away from cancer, which was hard for me because she had been instrumental in helping Alex deal with his various medical conditions and supporting us as his parents. She genuinely cared about her patients on a personal level and did everything she could to restore their health. I wasn’t sure how Alex would take the news of her passing, but when he asked me about her, I explained that she had gotten sick, died, and gone to heaven. Alex seemed to mull this over, satisfied that she was in a better place. However, he did ask if he could call her in heaven, and like Alex, I wish we could call her to let her know we’re thinking of her, and to be truthful, to get her medical advice occasionally.

6.  Speaking of phone calls, in my blog entry a few weeks ago “Woman’s Day Magazine,” I discussed how talking on the phone with the writer of the article, Marjorie Ingall, was amazingly easy, even though we’d never met. This week I read Marjorie’s blog entry “pam and alex” [To read her blog, click here.], in which she shares that she felt a similar comfort level in chatting with me. As she points, out, even though we differ in some key areas, we found these differences didn’t matter. We liked each other and enjoyed talking to one another. I had to laugh at her description of my blog as having “a whole lotta Jesus going on” and had to agree that I, like she, “felt comfortable instantaneously, two seconds into our first conversation.” And, Marjorie, if you’re reading this, you rock, too.

7.  One of the surprise benefits of having our family featured in the November issue of Woman’s Day magazine in the article “Caring for Alex” was that a close friend of mine from junior high who now lives in California saw the article and contacted me. Even though we haven’t been in touch for more than thirty years, we found common ground in our shared past and in our present day as mothers trying to do what’s best for our children. Guided by our faith and shaped by the difficulties our children face, we can now support each other through prayer and renewed friendship.  We’re both certain that God brought us together again; no randomness was involved here.

8.  This week, we were uncertain as to how Alex would react to Halloween and trick- or-treaters coming to our door. When he was little, Alex loved Halloween, dressing up in costumes I made for him, decorating pumpkins, and going trick-or-treating. As he got older, he enjoyed watching kids come to our house for treats. Since Ed had to teach on Halloween night, Alex and I were left to give out the goodies. Right before the designated trick-or-treat time, Alex suddenly had an anxiety attack and started saying repeatedly that he wanted “to be one, two, or three again.” I suppose he wished he were little enough to dress up and go trick-or-treating himself. Fortunately, he was able to pull himself together fairly quickly and then seemed to enjoy watching kids come to our door. It’s hard to be a little kid trapped in a young man’s body.

9.  On the other hand, Alex, who will turn twenty-one next month, participated in a rite of passage that delighted him as he voted for the President for the first time. With his interest in politics and Presidents, Alex has taken voting seriously and has participated in every Election Day since he turned eighteen and became of legal voting age. However, he had to wait until this year to have his chance to vote for the President. Watching his delight and pride in voting was truly a special event that made Ed and me proud as parents. With Election Day on Tuesday, we’ll see if his candidate wins, which will make his first Presidential election even more special.

10.  This week, we also encountered another calendar milestone that Alex usually anticipates happily—the change from Daylight Savings Time to Standard Time. With the changing of the clocks back one hour, we’re never certain how this will impact Alex’s sleep patterns. I always debate as to whether we should try to keep him awake longer or not. Fortunately, he made the decision for me, as he wound up staying up later because while he was waiting for Ed to come home from the Valparaiso University basketball game, he developed hiccups that kept him awake. He seemed not to be bothered by the hiccups, which was good, and Ed and I were surprised when he clearly asked a question (especially since lately he has limited his speech to only a few words often said quietly), “What was the score of the basketball game?” Maybe hiccups jolted his brain so that he could verbalize his thoughts better, or maybe he’s more alert when he stays up a little later. Whatever the reason, hearing him ask a good question was pleasant for us.

11.  And finally, this week, we found out that enrollment in the day program where we’re hoping to place Alex seems to be on hold even longer. Originally, we were told that they wanted a behavioral assessment and behavior plan in place prior to enrolling him. Now that the assessment and plan are nearly complete, we have been told that the day program currently has no openings.  While we still believe that this program will be good for Alex, Ed and I are convinced that the delay has a purpose to give Alex time to get better so that he’ll be successful once he gets there. I recently saw a quote that has helped me deal with my tendency to become impatient when I have to wait for things: “Faith is not just trusting God, but also trusting His timing.” I’m sure God has a plan, and we just wait for the right time.

 “And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.”  Romans 8:28

Parent or Guardian

Recently, I read two excellent blog entries written by mothers of children with autism who explain the process involved in being named their children’s legal guardians once they reach the age of eighteen.  Both mothers candidly describe the heartache they feel in taking legal action to make sure they will be able to make critical decisions for their children who cannot make those decisions for themselves. As Kim Stagliano explains in “Autism Sucks: And Then I Die”: “We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself.”

Similarly, Liz Becker shares her internal conflict about becoming her adult son’s guardian in “Guardianship and Autism,” noting, “In order to become the legal guardian and conservator for my autistic son, the court had to first find him incompetent to manage his own affairs. It was (and still is) a very emotional process. It is something that I had to choose to initiate because I knew Matt needed me to do it--but that doesn’t mean I took it in stride. It literally took years of thoughtful contemplation to even begin the legal process.”

Although guardianship laws may vary somewhat from state to state, the State of Indiana’s website explains the process quite clearly under the Family and Social Services Administration page: “Guardianship is an important consideration when young adults with developmental disabilities reach age 18. It is important for parents to realize that under the law everyone is considered to be an emancipated adult (their own legal guardian) at age 18, regardless of their disability. If the parent believes it is necessary for them to gain or maintain guardianship of their adult child after the age of 18, this can only be done through a court proceeding, which may be lengthy and expensive. Any action to establish guardianship of an adult with a disability must be filed in the probate court of the county of residence of the person for whom guardianship is being sought. Filing for guardianship is generally done with the assistance of an attorney, and includes a petition, followed by a hearing to prove that the person is incapacitated (unable to serve as his or her own guardian). Guardianship by another person by definition restricts that individual's rights and freedoms as a citizen, and should therefore not be entered into without serious consideration, including exploring alternatives which may better suit the individual's needs while still providing legal protection.”

Some of these rights that can be restricted once a disabled adult is deemed incapacitated or incompetent and requiring a legal guardian include the right to obtain a driver’s license, the right to own property, and the right to vote.  If parents wish to have some control over their disabled adult child’s affairs but not obtain guardianship, they may have legal papers drawn naming them as health care representatives and/or giving them power of attorney. In addition, Social Security may name a parent as a representative payee to oversee the distribution of disability benefits; similarly Medicaid may also name a parent to act as the adult child’s health care advocate. However, at times the adult with a disability may be required to sign his or her name on paperwork.

Although Ed and I have discussed and debated the pros and cons, we have opted not to seek legal guardianship of Alex at this point. Certainly, I respect the decision of those who have sought legal guardianship of their adult children and can imagine what a difficult decision that must be. When Alex was hospitalized last spring, we realized for the first time that we could no longer make some health care decisions for him since he was an adult. Therefore, we quickly had an attorney draw up legal papers naming us as Alex’s health care representatives so that we could make decisions regarding his medical care. I would recommend that parents of children with autism have this paperwork in place and ready when they turn eighteen instead of being caught unprepared in an emergency, as we were. We had assumed that as Alex’s parents, we would be able to make medical decisions for him, but we were wrong. Now that we have the legal papers naming us as Alex’s health care representatives, we take copies with us to every medical appointment so that we can be directly involved in Alex’s health care.

When we were filling out the countless forms last spring to obtain disability benefits for Alex, the question arose over and over as to whether we were Alex’s legal guardians. I found this somewhat surprising because none of my friends with adult children who have disabilities have sought legal guardianship for them. Nonetheless, I asked one of Alex’s caseworkers how common parents having legal guardianship is for adult children with autism, and she said that those whose parents could afford the legal fees typically obtained guardianship.  Since Social Security has named me as Alex’s representative payee to oversee the spending of his disability benefits, and Medicaid has approved me as his health care representative, we don ‘t feel the need at this point to seek legal guardianship. The government allows us to manage his finances and benefits, and the health care representative legal papers permit us to make decisions regarding his medical needs. For everything else, Alex is capable of signing his illegible signature, and he seems proud that he can do that for himself.

With the upcoming elections, Alex eagerly awaits his first time to vote for the President. As he has in every election since he turned eighteen, Alex considers the candidates and issues before making his decision and exercising his Constitutional right to vote. Just as I have in the past, this year I will again help him apply for an absentee ballot, for which he qualifies as a disabled adult, and he will proudly mark his ballot at home. To think of denying Alex his right as a citizen of the Unites States and his joy in participating in one of the rites of adulthood reconfirms our decision not to seek legal guardianship for him. In addition, the eternal optimist in me hopes that someday he will be more independent and not need us to make decisions for him. Relying on faith, we pray that having him declared incompetent will never be necessary, and we know with God all things are possible, including healing that would allow Alex to enjoy fully the freedom we cannot deny him at this point.

“Rabbi,” His disciples asked Him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

“It was not because of his sins or his parents’ sins, “ Jesus answered.  “This happened so the power of God could be seen in him.” John 9:2-3

Voting

Last week, Alex marked another milestone by participating in his first political election. Although he was old enough to vote in the Indiana state primary election in May, I had not assembled his paperwork in time for him to vote then. In Indiana, voters are required to provide official photo identification documents before voting to prevent voter fraud. Since Alex doesn’t have a driver’s license, we needed to get him an official state identification card instead. As I described in my earlier blog entry “Transitions,” this experience at the Bureau of Motor Vehicles in June went much more smoothly than we would have anticipated, primarily because the woman who worked with Alex was amazingly patient and understanding and because Alex was remarkably cooperative. In addition, I had spent time online beforehand, making sure we had all the required paperwork to prove that Alex was neither a terrorist nor an identity thief: birth certificate and Social Security card to verify his identity, along with a doctor’s bill and a bank statement reporting the value of his stocks to confirm his address. The only difficulty in getting the official state identification card was keeping him from smiling and showing his teeth—as required by law—in the photograph they took. Consequently, his photograph, like most people’s driver’s license pictures, is not terribly flattering. In fact, he looks somewhat like a thug. Nonetheless, he now has the identification needed to vote, and we also had him register to vote while we were at the BMV.

After receiving Alex’s voter registration card in the mail, we then needed to apply for an absentee ballot. Again, information available online made this task much simpler. Ed and I were uncertain how Alex would deal with voting in our regular polling place and decided that he would handle voting at home much better because he could take his time making his choices and not be distracted by other people and strange surroundings. Since disability is one of the valid reasons for requesting an absentee ballot, he used this option. After submitting the form to request an absentee ballot, a few weeks later he received his official ballot along with instructions and the envelope to mail it. Unlike many people who take voting for granted or simply choose not to participate in elections, Alex was excited about this opportunity to exercise his right as an adult and carefully considered his choices before submitting his ballot. In addition, Alex follows the news, and through his study of American history, he has a good grasp of the political process. Even though he doesn’t pay taxes other than sales tax, he strongly supports candidates who share his belief in the need for lower taxes. Because he values money and is a good shopper who looks for the best deal, his concern for saving money is really not surprising. In addition, Alex spends a great deal of time listening to conversations that Ed and I have about politics and likely has formed opinions based upon what he’s heard us discussing that influenced his decisions. With great seriousness of purpose, Alex made his choices, mailed his ballot, and became part of the American electorate.

Eagerly anticipating Election Day last week, Alex spent the entire evening watching the election results on the news stations and waited to see how his candidates ranked. As though he were viewing an exciting sports event, he had a contented grin and would occasionally stand up and clap while he watched the results. Because most of his candidates—local, state, and national—fared well, he felt proud to have supported these successful candidates. Just as Alex felt pride in casting his ballot, we felt pride that he took his responsibility seriously and was actively engaged in the election process. Moreover, we felt grateful that despite autism’s attempts to silence Alex, he was able to make his voice heard through his vote.

“Now He is far above any ruler or authority or power or leader or anything else—not only in this world but also in the world to come.” Ephesians 1:21