A Place of Rest

 

Last night I was organizing Alex’s bedroom, a task I had put off all summer, knowing that it would take a great deal of time and patience to sort through all his things. I also knew that I would have to go through all of his possessions when he was busily engaged in something else so that he wouldn’t distract me from sorting his things into three piles: keep, give away, and throw away. In the past, I was rarely able to put his belongings into the latter two piles because he wanted to keep everything that was in his room. To be honest, I had a great fear that if I threw away something of his, he would instinctively know what I had put in the trash and insist that he needed that item immediately. Moreover, I knew that he would be angry with me for having disposed of it. For most children, this might be a forgotten toy; for Alex, this might be an instruction manual for a gadget that had been long gone or a seemingly random list of numbers he had constructed and only he knew their significance. Typically, cleaning Alex’s room meant simply finding places for all his things and never really purging all the extraneous.

Yesterday’s end-of-summer cleaning, however, was different. As I carted out garbage bags full of his former belongings I felt certain he no longer needed, Alex calmly watched me and seemed pleased that his room was taking a more organized form. By removing dilapidated and outdated books, his bookshelves have room for those books he truly treasures, and he can now find them quickly because they are no longer stacked in piles on top of his desk. I did make one consolation in my determined effort to rid his room of mess: knowing his love for his world almanacs, I kept all of them, despite their torn covers and missing pages, and stacked them together on a shelf, which made Alex happy.

When I cleaned out his closet, I noticed something else that showed a clear sign of progress. In the past, Alex refused to wear any clothes that had words or logos on them. In previous blog entries, I have mentioned that he inexplicably referred to these as “bad imagine clothes.” Now, his closet contains sweatshirts with his favorite sports teams emblazoned on the fronts, and many of his newest t-shirts, which he helped select, have words on them. In fact, his current favorite t-shirt is one he found at Kohl’s that depicts some of the characters from Sesame Street, a favorite show from his childhood, with the saying, “Everything I needed to know I learned on the street.” Although I suspect he doesn’t really get the joke, he thinks it’s funny to wear a shirt with Elmo, Big Bird, and Cookie Monster at his age.

Part of my motivation to overhaul Alex’s room came from his recent request to get new bedding. For the past several years, he has preferred solid-colored sheets and a NASCAR comforter. Last week, he suddenly decided that he wanted Major League Baseball themed bedding instead. As he and I shopped online for a new comforter and sheets, he studied his options, and after asking me if one he liked was too expensive (and being reassured that the price was reasonable), he decisively chose the one he liked best. This process also showed signs of progress in that he came up with an idea totally on his own, patiently and carefully weighed his options, and then made a decision without relying upon me to make it for him.

As I finished the dreaded job of tackling his room, I realized that the cleaning of Alex’s room took on symbolic meaning, as well. Throwing away items he had ruined by throwing them or writing on them during his destructive phase was cathartic for me, a way of getting rid of bad memories. Moreover, I realized that fixing up this place where Alex rests comes when we have arrived at our own time of rest after a time of turmoil. No longer do I fear Alex’s wrath for moving or getting rid of his things. The improvements in his behavior along with his progress in making independent decisions and being more flexible about his surroundings and what he wears makes us embrace the positive changes and feel more hopeful about his future. For a time, we lived in constant fear of making Alex mad, and we did everything we could to make him happy. Now we live in peace knowing that he is happy and doesn’t need our constant coddling to make him that way. Whether this positive shift has come with time, therapy, healing, or a combination, we don’t know, but we do know that we are thankful that we can clear away the struggles of the past and enjoy the contentment we find in this blessed time of rest.

“The Lord replied, ‘…I will give you rest—everything will be fine for you.” Exodus 33:14

Autism News This Week

 

After Alex was diagnosed with autism eighteen years ago, I began researching autism, hoping to find ways to make his life better and easier. Indeed, the information I have gained through my investigating and reading has led us to therapies and methods that have helped him. At the same time, some articles I have read about autism, particularly those about how children with autism have been mistreated, anger me and make me more determined to protect Alex from those who might take advantage of his trusting nature. This week three major stories about autism appeared in the media, and each filled me with different emotions yet confirmed my need to seek more information and to keep working as Alex’s advocate.

The first story came out of Jurupa Valley, California, where parents of special education high school students complained that their children were expected to sort garbage as part of their curriculum. [To read this report, please click here.] As part of a life skills class, special education students had to pick through the school’s trash cans looking for recyclables, reportedly to be sold to make money for the special education program. When a freshman student with autism came home and told his mother about this activity, she immediately complained to the administration and school board. Apparently the superintendent’s response was that sorting garbage was a standard part of the curriculum and that no complaints had been received before last week. Perhaps the lack of complaints was because these children could not communicate to their parents that they were expected to do degrading and disgusting and potentially dangerous work. Once parents found out that garbage picking was part of the special education curriculum, they angrily complained, a school board member whose child also has special needs concurred with their concerns, and the school district apologized. However, instead of cancelling this program, the administration is reviewing it. Maybe the superintendent needs to sort garbage himself so that he can see how wrong it is for special needs children to be forced to do this activity. Teachers, administrators, and therapists who work with special needs children should always ask themselves, “If this were my child, how would I want him/her treated?” I seriously doubt garbage picking is something they would want their children doing as a school-sanctioned activity passed off as a “functional skill.” This type of special education “curriculum” reminds me why we chose to home school Alex.

Another story that raised my ire this week focused upon the admission of a Centers for Disease Control and Prevention research scientist that data was manipulated to dismiss the potential relationship between vaccines and autism. [To read this report, please click here.] This whistleblower, later revealed as Dr. William Thompson, finally admitted that the 2003 CDC report showing no cause between autism and the MMR vaccine was essentially fraudulent. The research at that time actually revealed a much higher rate of autism among African-American boys who received the MMR shot before age three. However, pressure from public health organizations, including the CDC, forced scientists to eliminate data that questioned vaccine safety and potentially indicted vaccines as related to the rise in autism rates. By suppressing this information, more than ten years has been essentially wasted in trying to find causes and cures for autism. By protecting companies that manufacture vaccines, the government health agencies have failed to protect children whose lives have been impacted seriously and negatively by autism, and this is shameful.

Although these articles angered me that people who should know better failed to protect children with special needs, a third report that appeared this week gives me hope for Alex’s future. Widely reported in various media outlets, recently published research indicates a likely cause of autism and a potentially promising treatment. [To read this research, please click here.] Through brain studies done by American neuroscientists, people with autism were found to have more synapses, or connections between nerves, than typical people have. While all humans are born with more synapses than they need, usually these additional synapses are pruned over time. However, in people with autism, the mechanism to get rid of unnecessary synapses somehow fails. While autism may be seen as lacking something; the reality seems to be that autism means having too much, specifically, having too many neural connections, which probably leads to the sensory overload that often characterizes autism.

By using the immunosuppressant drug rapamycin in mice that display autistic behaviors, normal pruning of synapses was restored, and autistic behaviors decreased. While this research seems promising, scientists caution that this drug has side effects and may not work in people as it does in mice. However, researchers seem optimistic that pursuing this problem of too many synapses could lead to development of medications with fewer side effects that would help not only children with autism but also adults with autism, as well. Perhaps one good thing about the current epidemic rate of 1 in 68 children having autism is that drug companies would see profitability in researching and manufacturing these types of medications, knowing that a large population could benefit. Certainly, I’m hopeful that research continues to find ways to heal the parts of the nervous system that autism impairs, and this report fueled my optimism that one day Alex will be cured.

As I have studied and researched autism this week, I have also watched many videos of people, including my friends and family members, taking the ice bucket challenge for ALS, a devastating neurological disorder. While I appreciate their willingness to support ALS awareness by making videos and donations, I wish that people would also wholeheartedly support autism, another devastating neurological disorder, with the same widespread enthusiasm. Instead of dumping ice water over one’s head, perhaps walking over hot coals would be a good challenge to raise autism awareness. I know that many autism parents like me wouldn’t think twice about walking over hot coals or even through fire for our kids to help them. In the meantime, we just keep searching for answers, working to make our children’s lives the best they can be, and praying for a cure I truly believe will come in time.

“Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You.” Psalm 25:5

Allies

 

This week, I began another school year, which meant that I once again entrusted Ed to take over solo parenting of Alex while I was at work. As I have mentioned previously, we have been blessed that our work schedules have always allowed at least one of us to be home to take care of Alex his entire life. In the summer, both of us are fortunate enough to be home from our teaching jobs. However, when we return to work in August, Alex must adapt to a new schedule in which I’m gone in the mornings, and his dad is at work in the afternoons.

Wanting this transition to go smoothly, every year I give Ed a crash course in reminding him of Alex’s routines and making sure he knows where everything is that Alex may need while I’m at work. Although he probably already knows the information I rattle off at him, he humors me by feigning interest and expressing gratitude for my concern. Thankfully, Alex adjusted well to my being gone this week, and my careful instructions proved unnecessary. In fact, I suspect that Alex and Ed use the time while I’m at work wisely, planning together ways to make a monkey out of me.

For instance, last night Ed offered to take my car and fill it with gas, a very thoughtful gesture. He even offered to take Alex along with him, which was nice. However, I wound up getting involved in the process that was supposed to relieve me of duty. Specifically, Ed told Alex that if he’d get his shoes and put them on, he’d take him to the gas station. While this seems innocent, I’m sure that the two of them plotted this whole sequence of events while I was at work this week.

Ed: “So, Alex, I’ll offer to take you to the gas station with me and tell you to go get your shoes. You just sit there, and I’ll stand there waiting for you to get them, knowing that you won’t.  I won’t go get them, either, pretending I’m waiting for you. Your mom will be happy that I’m taking her car to get gas, so she’ll just go get your shoes for you and help you put them on.” Both Ed and Alex laugh.
 
In a similar scenario, I picture Ed and Alex discussing how they’ll get me to find other things for them. I imagine it sounds something like this. Ed: “Alex, if you are trying to find something like your watch or your almanac or your minute timer, come tell me. I’ll repeat loudly whatever it is you’re looking for so that your mom, who’s in the other room, knows we’re blindly trying to find something.” Both laugh. “We’ll look half-heartedly, and then I’ll start saying loudly, ‘Alex, WHERE did you put it?’ Don’t answer me when I ask that. If your mom doesn’t come running, then I’ll start complaining about how you need to put your things where they belong. This will make your mom think we’re really frustrated, so she’ll look for your lost belonging. We’ll start timing her and wait for her to find it in no time and to tell us that if it had been a snake, it would have bitten us.” Both laugh hysterically.

Besides finding things for Alex, I also spend quite a bit of time as his personal waitress. Although Ed sometimes must fix Alex food and drinks, when I’m home, he usually relies upon me to serve him. I think this arrangement occurs because of the following likely conversation between my guys when I’m at work. Ed: “Now, Alex, when you want something to eat or drink, you can come ask me instead of your mom. However, I’ll act like I don’t hear you the first ten times you ask. I’ll keep staring at the television or computer screen all the while you’re asking me. I won’t completely ignore you, though, because I’ll keep asking you what you want. If your mom doesn’t hear your request, I’ll keep repeating it louder and louder like this, ‘Lemonade? You want lemonade? I’m not sure if we have lemonade.’ If that doesn’t bring her running, I’ll say, ‘Go ask Mommy if it’s okay for you to have lemonade this early/late/often.’ Then she’ll probably fix you whatever you ask her or maybe offer you something better to eat or drink. I’ll just sit here and watch.” Both laugh and high five each other.
 
All kidding aside, I’m thankful that Ed really does take such good care of Alex when I’m at work and even more grateful that the two of them have such a close, loving relationship. I don’t have to worry while I’m at work because I know that they are content together. Although, I must admit, I’d love to hear some of the conversations between the two of them when I’m not home and they’re trying to find Alex’s shoes or his watch or lemonade. I’m betting they manage a lot better when they’re alone than I would think. At least I hope so.

“The one who plants and the one who waters work together with the same purpose. And both will be rewarded for their own hard work.” I Corinthians 3:8

The Summer of Alex

 

“Don’t cry because it’s over. Smile because it happened.” Dr. Seuss

As I return to my teaching job this week, I feel anticipation about starting a new school year and a wistfulness that summer must come to an end. While I always feel a sense of sadness that the freedom of summer must be replaced with the responsibilities of real life, I find it harder to say goodbye to this one, for it has been the best summer of Alex’s life. Thinking back to the terrible struggles we endured two years ago with his anxiety and aggression that led to weeks of hospitalization, we find ourselves amazed that we have come this far in a relatively short time. Even last summer, which brought improvements, still found us constantly monitoring Alex’s movements, fearful that he might slip back to a place where we found him nearly unreachable. Certainly, he was better, but he was also hazy, fogged by the medications needed to keep him calm. However, with time, prayer, and healing, Alex has emerged, better than ever and ready to enjoy life again. Praise God.

This summer, we have taken him to several concerts in our downtown park, where he has enjoyed listening to all types of music, from classical to 1950’s oldies to 1980’s pop to Celtic to his proclaimed favorite, jazz. Munching on a snack, he bobbed his head to the beat of the music and clearly expressed his joy, smiling broadly. Going shopping, he not only pushed the cart, but he also made comments about the things he noticed and made requests about things he wanted to buy. When we went to restaurants, he savored his food, enjoyed watching other people, and never seemed to be in a hurry, sitting calmly and happily. In walks through parks and along pathways, he kept us moving at a rapid pace, as he eagerly took big strides in his enthusiasm to get where he was going. In fact, his walking pattern seems symbolic of his new outlook on life: moving forward rapidly because something better is ahead.

Aside from the satisfaction of knowing that Alex is content, probably the biggest difference of this summer has been that we trust him again. After his unpredictable behaviors of the past made us cautious of making him upset or leaving him alone for any length of time without constantly monitoring what he was doing, we now know that he isn’t likely to do anything wrong. When he’s not doing something with us, he’s reading or watching television or using his iPad or listening to music—all typical activities for a young man his age. As our trust in him has grown, we have also become less fearful that he would return to destructive behaviors, such as throwing things in anger. This summer, breakable objects that were hidden in safe places have returned to their proper homes. All of the fragile glass and sentimental old family keepsakes have reappeared in my dining room hutch, no longer boxed away in bubble wrap in the basement. Remote controls have returned to the open instead of being hidden away, as have electronic devices. Now when we hear noises, we ask, “Alex, are you okay?” instead of “Stop, Alex! What are you doing?” Not having to live in constant fear of his meltdowns has truly been a blessing.

With the significant behavioral improvements, Alex has also made great progress in his language skills. Working with his therapists and us, he seems to have gained more confidence in his ability to speak. As he asks questions and makes comments on his observations, we realize how much better his language has become in the past year. Moreover, he’s speaking up more and mumbling less. Through the things he says and through questions he asks and answers, we know that his mind is sharp again, something we feared had somehow been lost during the turbulent times. His keen memory is indeed intact, as his ironic sense of humor. What may have been dulled thankfully now shines again.

Best of all, Alex has shown great improvements in his social skills. When he’s out in public, even in crowded places, he remains calm and behaves appropriately. He has learned to refrain from making inappropriate remarks and fully cooperates with us when we take him places. Because he has become so trustworthy, Ed and I no longer feel the need to troubleshoot constantly, looking for potential problems, and we can relax and enjoy our outings as much as Alex does. Last week, when Ed’s sister, brother-in-law, and niece came to visit us, Alex interacted with them nicely and enjoyed spending every minute with them instead of wandering off to his room to be alone. As I watched him help his cousin collect stones from the beach of Lake Michigan, I felt a sense of peace knowing for certain, he’s going to be all right.

While I have hoped and prayed and struggled to have faith that everything will be all right, this summer has brought the reassurance that Alex IS going to be all right. If he can improve as much as he has the past two years, he can continue to make great strides. Just as he walks with great purpose and enthusiasm, his life holds that same purpose and enthusiasm. As Ed and I return to teaching our students for another year, we remember that our prize pupil Alex still has much to learn and much to teach us about life. While we will miss the lazy summer days of fun, we move forward with anticipation, knowing that even better days lie in store for us as Alex continues to surprise us with what he can do and shows us how the simple joys in life often bring the greatest contentment.

“Come see what our God has done, what awesome miracles he performs for people!” Psalm 66:5

Autism and Hypothyroidism

 

While autism is primarily associated with difficulties in communication and social skills, certain medical issues may also be connected with this condition. For example, children with autism may have food allergies or sensitivities to glutens and/or milk products, as Alex does. Recently, I discovered another condition that can be associated with autism is hypothyroidism, which occurs when not enough thyroid hormones are produced in the body. Common symptoms of hypothyroidism include fatigue, weight gain, dry skin and fingernails, depression, and increased sensitivity to temperature changes. Fortunately, hypothyroidism can easily be treated by taking prescription medication, thyroid hormone medicine to replace what the body cannot produce, typically for the rest of the patient’s life. However, careful monitoring through observation of symptoms and blood tests are necessary to ensure correct levels of medication are treating the condition.

When I was thirty-five years old, I became aware of hypothyroidism’s effects when I was diagnosed with tumors in my thyroid. Because biopsies were inconclusive, most of my thyroid was removed surgically; thankfully, those tumors turned out to be benign. However, since my thyroid could not produce the levels of hormones my body needed to function properly, I have been on thyroid medication since then. Over the years, I have been on various dosages of the generic medications levoxyl and levothyroxine to compensate for the thyroid hormones my body lacks. Other than taking a small pill every morning when I awaken and monitoring my thyroid levels through blood tests once or twice a year, hypothyroidism has typically not been a problem for me.

Two years ago, we discovered that Alex also has hypothyroidism when routine blood tests to check how his medications affect his metabolism indicated that his thyroid hormone levels were lower than normal. The doctor indicated that the lithium he takes to regulate his moods can sometimes be a factor in causing disruption of thyroid hormone levels. In addition, hypothyroidism tends to run in families. Since my brother and I both have hypothyroidism, Alex could have very well inherited that tendency. After Alex was diagnosed with the low thyroid levels, the doctor prescribed a low dose of levothyroxine to be taken once daily in the morning. In addition, his thyroid levels would continue to be monitored on a regular basis through blood tests.

After Alex was diagnosed with hypothyroidism, I realized that he had shown many of the same symptoms I had displayed with the condition: dry skin, oversensitivity to cold, and a typically below normal body temperature. Nonetheless, like me, he has also responded well to taking thyroid medicine and seems unfazed by his sluggish thyroid. A few weeks ago during a routine exam, his primary care physician noted that Alex’s most recent blood tests indicated that his thyroid hormone levels were too low, indicating that his medication needed to be changed to address his underactive thyroid. As his doctor noted, Alex can’t easily verbalize his symptoms, so we must rely upon his lab tests and careful observation to see if his hypothyroidism is causing problems. His main concern was that if Alex’s thyroid levels continued to be too low, this could not only cause physical problems, but could also cause cognitive impairment. Consequently, he decided to add Nature Throid, a natural hormone supplement, to Alex’s current dose of levothyroxine to help his metabolism and address any symptoms of hypothyroidism.

In doing some research about the connection between autism and hypothyroidism, I ran across a fascinating article by internist Raphael Kellman, M.D. entitled “The Thyroid-Autism Connection: The Role of Endocrine Disruptors.” [To read this article, please click here.] Dr. Kellman explains that autism and hypothyroidism are connected, noting the effects of environmental toxins on both conditions. Additionally, he states, “Because children with autism are stressed emotionally and physiologically and are in an inflammatory state, they are likely to have low cellular thyroid hormone levels (that is, an underactive thyroid). However, because their blood tests may be normal, their low cellular TH [thyroid hormone] levels are frequently overlooked.” He goes on to state that he has discovered approximately seventy percent of children with autism have hypothyroidism. Moreover, he has found that treating children who have autism and hypothyroidism with thyroid hormones helps improve their language, cognition, hyperactivity, motor skills, social skills, and gastrointestinal issues. His experience has been that many make significant improvement, and some make complete recovery by treatment with proper levels of thyroid hormone medication.

After reading this research, I wondered how many children with autism suffer from symptoms of undiagnosed hypothyroidism. I know from my own experience that when my thyroid hormone levels are off, I can feel sluggish, dizzy, ill, or terribly anxious and jittery. Fortunately, I have the language skills to explain to my doctor that I suspect my thyroid hormone levels need to be checked and perhaps my medication needs to be adjusted. Children with autism probably do not know why they are not feeling well and may express the symptoms through negative behaviors instead of language. Thankfully, Alex’s doctor not only monitors his metabolism, recognizing the significant impact his thyroid hormone levels can have on his physical and mental well-being, but he also immediately addresses the condition through appropriate medication and supplements.

Although Alex has only been on the new Nature Throid supplement for a week and a half, we have already begun to see positive effects. He seems more mentally alert and quicker witted, and he has also been less fatigued. More importantly, he seems even happier and more content than he usually is. Although these improvements could be coincidental, I believe that they are signs of healing that will continue to get better with time. Since we have been blessed with these positive changes, I would encourage other parents of children with autism to find doctors willing to pursue the possibility that hypothyroidism may be the cause of symptoms often attributed to autism. If taking a small inexpensive pill every day can significantly improve how that child feels, certainly the benefits are clear. I hope and pray that Alex continues to respond to the hypothyroidism treatment and that others may also find similar positive outcomes, as well.

“There the child grew up healthy and strong. He was filled with wisdom, and God’s favor was on him.” Luke 2:40