Five Hundred

On June 13, 2010, I posted my first blog entry on One Autism Mom’s Notes. When I wrote that initial entry, Alex was eighteen years old and doing quite well after some trying teenage years. I thought we had come to a point in our lives where we could breathe easy and keep moving forward. With a little more free time on my hands, I decided to create a blog where I could write about Alex and how autism had impacted our family life. My hope was that by sharing our experiences and the things we had learned along the way, our stories might help other families dealing with autism. Moreover, I wanted to write a history for Alex so that he could see how far he has come in the years since his diagnosis with autism at age four.

Now nearly eight years later, this is the five hundredth blog post I’ve written. When I began writing about Alex, I had no idea that I would have enough to say for five hundred essays. Moreover, I had no idea that we still had struggles ahead of us, especially a terribly turbulent time in which anxiety overtook Alex and made him aggressive and wildly unpredictable. As parents we had to make our most difficult decision: to hospitalize him for several weeks in the behavioral medicine ward of a nearby hospital in the spring of 2012. However, this heart-wrenching time led us to professionals who could help Alex, and this was the beginning of new healing for him––truly a blessing in disguise.

Over the past 499 essays, I’ve shared the good, the bad, and the ugly as candidly as possible in hopes that other parents won’t feel alone in dealing with the obstacles their children face with autism. I’ve also passed along research and methods I’ve found interesting or helpful, just as I would pass along a great recipe for cookies. With each research study I read, in my optimistically Pollyanna way, I believe that I’m going to stumble onto something that will not only make Alex better, but also aid other children and adults dealing with autism. Consequently, I keep reading, researching, and writing about autism, waiting for a cure.

In thinking about this 500 milestone, I wanted to celebrate with five unexpected blessings that have occurred in writing this blog. First, I have been amazed to see my words go out into the world, where they––according to the Blogspot stats––have been read on six continents. (I’m guessing the folks in Antarctica have more important things to do, like keeping warm, instead of reading my blog, so I’m good with that.) When I was happily working at the “Be Creative” table as a third grader, wondering if anyone other than my teachers and my mom would ever read my writings, I never dreamed that people in countries I had to find on a map would read my work. I’m honored and awed by that.

Secondly, when I was a college student working on my undergraduate and graduate degrees in English, I had a keen interest in psychology and took as many elective psychology classes as I could fit in my schedule. I’m sure that was God’s plan because those courses have come in handy in dealing with and understanding a child whose brain works differently than most and whose development has followed a unique pattern. Moreover, the terminology I learned has proven useful in reading autism research. Imagine my surprise and delight in being contacted by a psychiatrist in Australia who wanted to use an excerpt from one of my blog entries as part of an online psychology textbook. Dr. Joseph Rey, the Head of Psychiatry at The University of Notre Dame School of Medicine in Sydney, requested my essay on Theory of Mind to be included in The IACAPAP Textbook of Child and Adolescent Mental Health published online in 2014. For this work, Dr. Rey received the 2014 International Association of Child and Adolescent Psychiatry and Allied Disciplines (IACAPAP) International Contribution Award. To have my writing published in such a distinguished textbook is an opportunity I never would have dreamed could happen.

Another awesome connection made because of the blog has been one with author Marjorie Ingall. In the summer of 2012, Marjorie contacted me after reading my blog and wanted to interview me for an article about autism she was writing for a magazine. Her warmth and humor made our phone conversations comfortable and pleasant, as though we were old friends. Those interviews became a feature article in the November 2012 issue of Woman’s Day magazine in which Marjorie told our family’s story skillfully and compassionately. In her own blog on October 19, 2012, Marjorie describes the connection we found as mothers during the interview process. Not only did I appreciate the kind words she offered about me, but her description of my blog also made me smile: “Her blog is full of evidence of her Christian faith––each post ends with a Biblical quote, and there’s a whole lotta Jesus going on...” Despite our differences in religious backgrounds––her Jewish faith and my Protestant faith––God knew we would appreciate each other and brought us together through the blog.

Besides getting to meet some very interesting and talented new people, including some wonderful autism parents, One Autism Mom’s Notes has helped me reconnect with old friends. My best friend from college with whom I’d lost touch over the years, emailed me after seeing an article about my blog in our college alumni magazine and introduced me to one of her closest friends, who is also an autism mom. Also, one of my good friends from junior high contacted me after reading the Woman’s Day article and the blog; she, too, is raising a child with autism. The demands of raising a child with autism makes maintaining friendships challenging; being able to get back in touch with old friends has truly been a blessing.

However, the greatest blessing of all has been seeing God’s promises fulfilled over the years as Alex has made progress. Through the challenges, trials, and uncertainties, God has been faithful to our family and brought us through it all. While our faith has been mightily tested at times, we always knew that God’s plans were better than our own, and we knew that He was looking out for Alex’s best interests. In those times that we wavered and wondered whether he heard our prayers, we only needed to listen to Alex’s earnest bedtime prayers, filled with childlike faith, to carry us through. As we celebrate Palm Sunday today and anticipate Easter, remembering the resurrection of Jesus Christ, we know that with God, nothing is impossible. Consequently, we continue to put our hope and trust in Him, knowing that He will always take care of us, just as He always has in the past. With that in mind, we know that Alex’s future will, indeed, be bright.

To those who have read my blog, written or said kind comments, and encouraged me, I truly appreciate your support. Special thanks go to my husband and my mom not only for reading every single one of the five hundred at least twice, proofreading carefully, but also for the constant source of unconditional love, strength, and faith you provide Alex and me. I thank God every day for the three of you and what blessings you are!

“So teach us to number our days, that we may gain a heart of wisdom.” Psalm 90:12

The Sunshine Vitamin: Vitamin D3 and Autism

Always seeking safe and effective supplements to help heal Alex’s body from the effects of autism, I have been a firm believer in the value of vitamin D3 to keep him healthy. Upon the recommendation of his previous doctor, Alex has taken vitamin D3 supplements daily for the past few years. Recent research indicates that, indeed, vitamin D3 supplements prove quite beneficial to children with autism, perhaps because many of them have vitamin D deficiencies.

According to Web MD.com, vitamin D is found in small amounts in a few foods, including fatty fish, such as sardines and tuna. Fortified dairy products, juices, and cereals have added vitamin D. However, the vast majority, namely eighty to ninety percent, of vitamin D comes from exposure to sunlight. Hence, vitamin D is sometimes referred to as “the sunshine vitamin.” People who live in northern regions, such as Canada and the northern half of the United States, are at risk of vitamin D deficiency because of the lack of sunshine for several months of the year. In addition, even those who have more exposure to sunshine may also be vitamin D deficient if they stay indoors or try to prevent skin cancer by wearing sunscreen or protective clothing. Nonetheless, vitamin D is crucial for maintaining healthy bones, boosting the immune system, and preventing autoimmune disorders and cancer. Consequently, vitamin D supplements, typically in the form of cholecalciferol, may benefit many people, not just those with autism.

In the January 2018 issue of the Journal of Child Psychology and Psychiatry and Allied Disciplines, researchers primarily based at Assiut University in Egypt published an article entitled, “Randomized controlled trial of vitamin D supplementation in children with autism spectrum disorder.” [To read this article, please click here.] For their study, they included 109 children with autism––85 boys and 24 girls––ages 3-10. In this double-blind study, the children received vitamin D3 supplements or a placebo for four months. Those receiving vitamin D3 were given 300 I.U. per kilogram daily with a maximum dosage of 5000 I.U. per day.

Using typical autism assessments, including the Childhood Autism Rating Scale, the Aberrant Behavior Checklist, the Social Responsiveness Scale, and the Autism Treatment Evaluation Checklist, the researchers evaluated how profoundly each child was impacted by autism before and after the four-month study. In addition, the researchers measured the levels of vitamin D in the children’s blood at the beginning and end of the study.

Researchers noted that the children tolerated the vitamin D3 supplements quite well, despite the high doses. Moreover, they determined, “The autism symptoms of the children improved significantly following 4-month vitamin D3 supplementation, but not in the placebo group.” The researchers additionally concluded that this study shows the “efficacy and tolerability of vitamin D3 in children with ASD.”

A similar study done in China and the Netherlands further supports the benefits of vitamin D3 supplements for children with autism.  In the June 2017 issue of Nutritional Neuroscience, these researchers published an article entitled, “Clinical improvement following vitamin D3 supplementation in Autism Spectrum Disorder.” [To read this article, please click here.] For this research, five hundred children were included––215 with autism and 285 typically developing children.

Of the children with autism, 37 received vitamin D3 supplements for three months. As with the study done in Egypt, autism evaluations, specifically the Aberrant Behavior Checklist and the Childhood Autism Rating Scale, were used to assess the children’s autism symptoms at the beginning and end of the research. Also, their blood levels of vitamin D were tested before and after the study was done. The researchers noted that the serum levels of vitamin D were “significantly lower” in the children with autism than in the typical children.

After three months of vitamin D3 supplements, the severity of autism symptoms, as indicated by the standard autism evaluations, was greatly reduced. Consequently, the researchers concluded that vitamin D deficiency may contribute to symptoms of autism. In addition, the researchers deem vitamin D to be a safe and inexpensive treatment that “may significantly improve the outcome of some children with ASD.”

Both of these research studies demonstrate the value of supplementation with vitamin D3 for children with autism. The improvements seen in relatively short periods of time (three and four months) indicate that vitamin D3 works quickly to alleviate some symptoms of autism. Perhaps some metabolic issue found in autism requires that these children need vitamin D3 supplements to address deficiencies. More research may be needed to find the connection between vitamin D deficiency and autism, and maybe trial runs of vitamin D supplementation under medical supervision would benefit children with autism. Certainly, the significant improvements noted in the children who participated in these studies offer hope that a simple, safe, and inexpensive solution may help many children with autism lead healthier and better lives.

“For the Lord God is our sun and our shield. He gives us grace and glory. The Lord will withhold no good thing from those who do what is right.” Psalm 84:11

Decisions, Decisions

 

The average teacher supposedly makes approximately 1,500 decisions every day. Since the average parent raising a child with autism makes at least that many decisions daily, my many years spent in teaching provided excellent practice for being an autism mom. In making those choices, I rely upon common sense, past experience, research, mother’s instincts, and most of all, prayer. Although my supportive husband kindly and generously tells me that I always make the right decisions when it comes to Alex, I know that I make mistakes at times. However, I always strive to do what’s best for him, and I’m willing to make changes when the consequences of choices don’t go the way I’d planned. On the other hand, sometimes when things go awry, we are actually led to something that works out better than we had imagined.

The other day while changing the sheets on Alex’s bed, I decided to flip the mattress on his bed, something I do once or twice a year. As I turned over his mattress, I was shocked to discover a golf-ball sized hole in the underside, especially since the mattress is less than five years old. Pulling the mattress aside to get a better look, I found that his box springs had a corresponding hole, as well. Further inspection seemed to indicate that a broken spring had punctured the underside of the mattress and the top of the box springs. While I was thankful that spring had not poked through the top of the mattress and done harm to Alex, I had a fleeting fear that perhaps some animal had somehow gotten into his room, chewed his bedding, and made a comfy home there. If there were rodents in Alex’s room, I knew I was going to need backup, so I decided to call Ed upstairs and get his calm and logical assessment of the situation.

After inspecting the holey mattress and box spring, Ed understood my infestation concerns––despite their unlikelihood––and decided to get tools to investigate further. Armed with a flashlight and scissors to gain a better view of the damaged bed, he decided quickly that the culprit was the broken spring and not some crafty critter. At this point, I was wishing that I hadn’t decided to flip the mattress in the first place, but we knew we would need to get a new mattress and box springs for Alex immediately. As we anticipated, he was upset that we had taken his bed apart and worried that he would have no place to sleep that night. Despite reassuring him that we would get him a new bed right away and offering him one of our three couches, our bed, or the bed in our spare room as places to rest while he waited, Alex was not a happy camper.

Remembering that my parents had offered us months ago a practically new extra bed that they wanted to get out of the way, I decided this was the easiest solution. After a phone call to my mom, some measuring of Ed’s crossover SUV, and easing Alex’s concerns by telling him he was getting the bed from Grandpa’s t.v. room, we rapidly set the plan in motion. After Ed made two quick trips to my parents’ house, which is less than ten minutes away, and carried the new mattress and box springs upstairs, I hastily put new sheets on the bed, and Alex immediately and happily curled up in his new bed in the middle of the afternoon, as if to make sure no one bothered his new favorite spot. Moreover, he slept peacefully in his new bed that night, clearly unfazed by the changes that had occurred during the day.

While my impulsive decision to flip Alex’s mattress created some brief unrest, thanks to some quick thinking, my parents’ generosity, Ed’s agile furniture moving, and Alex’s willingness to accept change, we worked together to resolve the problem. Furthermore, all of us can rest easier knowing that Alex is no longer sleeping on a defective mattress.

In addition to the new bed, we made another change that could have impacted Alex’s sleep for better or worse. During our regular six-month appointment with Alex’s psychiatric nurse practitioner last month, she recommended that we start gradually weaning him off one of his anxiety medications. Knowing that Ed would be on spring break this month, I had decided not to make any changes in Alex’s medication until then. Even though Alex has responded quite well to medication reductions, I’m always cautious about the timing of these changes. In case Alex responded to this medication change negatively, I wanted to have Ed at home.

Last weekend, I thought we were ready to start decreasing the medication, but before we made the change, Alex was acting a bit edgy. Seeing this as a sign that he wasn’t ready for any changes, I decided that we could wait until Ed finishes his semester in May. A few days later, I realized why I had mother’s instinct to wait on reducing that medication. On Monday, we received tests results indicating that another one of Alex’s medication levels is too high, so he will have to take a lower dose of it. Remembering the valuable lesson Alex’s childhood doctor taught me about only making one change at a time so that we know the likely causes of any reactions he may show, I knew my decision to delay making changes with the other medication was the right one. Instead, we will allow Alex’s body to adapt to the lower doses of the medication shown to be too high and will wait a few months before adjusting the other one. Fortunately, Alex seems to be adapting quite well to the lower dose of the medication that tested too high.

While the parental responsibility of making decisions for a child, especially one with special needs, can be daunting, we keep doing our best to choose wisely. Using all our available resources, including seeking advice from the wonderful professionals who work with Alex, we hope that we are doing the right thing every time we are faced with a choice. More importantly, we trust that God is leading us every step along the way––in decisions big and small––to make Alex healthy and happy and to keep him safe. Believing that God knows Alex’s every need reassures us that He will guide us as parents and that He will make certain every good plan He has for Alex’s life will be fulfilled.

“Trust in the Lord with all your heart; do not depend on your own understanding. Seek His will in all you do, and He will show you which path to take.” Proverbs 3:5-6

Helping Hands and Fleet Feet

 

A few weeks ago, hurrying down the basement stairs, I somehow missed the last step and stumbled. The outside of my sock-clad foot hit the last stair, and as I lurched forward, my toes jammed into the basement floor. By the grace of God, I somehow managed not to break any bones, but I did bruise my left foot badly. Despite putting ice on my foot the rest of the day, it remained swollen and painful. That evening, I literally crawled across the floors and up the stairs to bed, too sore to walk and too proud to accept Ed’s help.

Over the next several days, my foot turned a rainbow of colors––blue, purple, green, and yellow––but it improved every day, thanks to rest, Icy Hot cream, Epsom salts soaks (no wonder Alex loves baths in Epsom salts!), and Arnica gel, a newly discovered natural wonder for bruises. While I couldn’t walk as fast on my injured foot, I managed to keep up with my usual routines of taking care of Alex’s needs. Thankful that I wasn’t hurt worse, I realized how much I took for granted the act of walking. Moreover, this incident reminded me that I must always be in good shape so that I can tend to Alex.

Last week, a close friend of mine who is also caring for a family member was explaining all the things she has to do for him daily to a group of friends. She remarked that when people’s hands don’t work properly, they need to rely upon others to do many things for them every day. As she listed the various tasks she must do as part of her routine caregiving, I nodded my head empathetically. Because of Alex’s poor fine motor skills and medication-induced hand tremors, he relies upon us for help with many activities most people take for granted, as I did with walking until my recent fall.

One of our friends sympathetically listened and then began asking me what kinds of things I needed to do for Alex. To give her one area of examples, I explained that he needs help with basic grooming tasks: cutting his nails, combing his hair, brushing his teeth, and shaving. Showing genuine interest, she asked me if I used an electric razor on him and seemed surprised when I told her that I use a regular razor to shave his face. As I explained to her, I have been doing this for several years and am fortunate that Alex is cooperative when I’m grooming him, so he does fine with a regular razor and shaving cream. In fact, I think Alex’s favorite part of the routine is when we sing the novelty song, “Shaving Cream” as I deftly move the razor across his face and neck.

Yesterday, I was reminding Alex of the importance of thanking people when they do something to help him. When he asked me for examples, I told him that his dad and I do about a hundred things every day to help him. He asked, “Or ninety-six exactly?” I assured him that I could probably come up with at least ninety-six and maybe more than one hundred. While all parents, especially those with young children, do dozens of tasks to help their children, I doubt that most people realize how many things parents of special needs children continue to do for their sons and daughters well into their adult years.

One task requiring our assistance is helping him apply lip balm multiple times a day. Alex lacks the dexterity to remove the lid from the lip balm and to apply the moisturizer to his own lips. This winter, he has become quite a connoisseur of lip balm, owning a collection of various brands and flavors. He has berry, lemon, orange, coconut, spearmint, and peppermint flavored lip balms that he asks to apply numerous times throughout every day. However, his current personal favorite seems to be vanilla, which is also my favorite. One day, he informed me after getting close enough to catch a whiff of vanilla lip balm on my lips, “You smell like [marshmallow] Peeps!” I wasn’t sure whether this was a compliment or not until I caught him eyeing my tube of lip balm. When I explained that we don’t share lip balm with other people and asked him if he knew why, assuming he understood the germ factor, he nodded and replied, “Yes, it’s in the Ten Commandments.” Well, it’s not in the Ten Commandments, but maybe it should be. Needless to say, I bought him his own vanilla lip balm so that he, too, can smell like Peeps, especially since we reapply it at least a half dozen times per day.

In addition to grooming, Ed and I help Alex with cleaning his eyeglasses; choosing his clothing every day; getting dressed because he cannot properly manipulate buttons, zippers, or shoelaces; doing his laundry; filling out forms because his handwriting is illegible; managing his finances; buying whatever he needs; setting up appointments; refilling and administering his medications; and chauffeuring him because he cannot drive. Last week, I had two people who needed to speak to Alex on the phone, and I had to explain that I am his voice because his language skills are impaired. I was half-tempted to put him on the phone to prove my point but instead explained that I have medical power of attorney and can advocate for him. One remained unconvinced of my authority and will be receiving a letter and a copy of the legal paperwork in the mail next week. Add personal secretary to my list of tasks.

Another area in which Alex needs help because of his limited dexterity is preparing food. For safety reasons––to prevent burns and severed fingers­­––we fix all of his meals for him and cut his food into bite-sized pieces. Apparently, he realizes the value of our assistance in this area because if he thinks he has annoyed me, he always asks if I will make him a fruit smoothie that evening. Apparently, smoothie maker is one of my more important daily jobs in Alex’s estimation.

As we strive to make Alex’s life the best it can possibly be by helping him complete the daily tasks he cannot do on his own, we pray that one day he will overcome the present obstacles and be able to do things independently. In the meantime, I have remembered to walk more carefully and to take good care of myself, knowing Alex relies upon me to be surefooted enough to help him with tasks most people take for granted. I look forward to the day when I hear him singing “Shaving Cream” while shaving his own face, followed by applying his own Peeps-scented lip balm, and making his own fruit smoothies. Maybe he could even make a fruit smoothie for me while he’s at it. Now, that will be an accomplishment worth celebrating!

“Our lives are in His hands, and He keeps our feet from stumbling.” Psalm 66:9