Benefits of Cognitive Behavioral Therapy in Autism

Last month, Science Daily published an online article about new research touting the value of cognitive behavioral therapy for children with autism. [To read this summary article, “Cognitive behavioral therapy can improve emotion regulation in children with autism,” please click here.] Based upon an article published recently in the Journal of Child Psychology and Psychiatry, this research was done at York University’s Faculty of Health under the direction of Associate Professor in Psychology Jonathan Weiss.

In this study, sixty-eight children with autism aged eight to twelve years old were randomly assigned to two groups. The first group received ten sessions of cognitive behavioral therapy right away, and the others were on a waiting list to receive therapy. The therapy sessions involved teaching the children to develop the emotional tools they need to face challenging situations. Their parents were also part of the therapy sessions, acting as co-therapists, practicing what they learned with their children. As Dr. Weiss notes, “We believe that children grow and develop and improve within the context of healthy families and this intervention aids to help the family unit more broadly to be the agent of change.”

The children’s behavior and emotions were assessed at the beginning and end of the research study. To prevent bias, they were evaluated by a psychologist who was not involved in the therapy sessions and who did not know which children received therapy or were on the waiting list. Seventy-four percent of the children who received therapy were rated as improved in contrast to just thirty-one percent of those who did not receive therapy. In response to these findings, Dr. Weiss notes, “We showed that children who received this treatment right away improved in their ability to manage their emotions, and in overall mental health problems, versus kids who were waiting for treatment.”

This groundbreaking research shows that cognitive behavioral therapy can help children with autism deal with not only anxiety but also other emotions, such as sadness and anger. Learning to manage emotions is crucial in autism since more than seventy percent of children cope with emotional issues: about 50% deal with anxiety and another 25-40% struggle with anger or depression. Because of the success researchers in this study found in using cognitive behavioral therapy with children who have autism, Dr. Weiss concludes, “We can use this same intervention to improve children’s skills more broadly regardless of what emotional challenge they have. We can make them more resilient to many emotional and mental health issues.”

According to the Mayo Clinic website, cognitive behavioral therapy involves working with a mental health counselor in a structured way to learn how to cope with stressful situations in life. The goal is to see challenges more clearly and to respond to them more effectively. Therapy sessions often involve learning and practicing relaxation and coping skills as well as stress management. Cognitive behavioral therapy usually includes identifying problems in life; discussing thoughts, feelings, and beliefs about these problems; recognizing thoughts about these problems that are negative or inaccurate; and reshaping any negative or inaccurate ways of thinking.

Although many children with autism participate in applied behavior analysis therapy, Alex has truly benefited from cognitive behavioral therapy. Working one hour per week with his behavioral therapist (as opposed to the more than twenty hours per week typically found in ABA therapy), Alex has learned to verbalize his concerns and to recognize faulty reasoning. For example, he tends to exaggerate problems in his mind, thinking that they will last “forever” and “never” be solved. His therapist has taught him coping and calming skills so that he can rationally analyze a situation and feel more in control when anxiety strikes. Moreover, she has taught him positive affirmation statements to recite whenever he feels overwhelmed, such as, “Everything will be all right.” Because his mind is quite logical, Alex has responded to the methods of cognitive behavioral therapy very well, and we have seen significant gains in his behavior and ability to deal with his emotions. Moreover, we are grateful for the kindness, patience, and expertise of his behavioral therapist who recognizes his potential and strives to make him better.

Hopefully, the successful results found in the recent research study on using cognitive behavioral therapy to help emotional issues in autism will encourage other therapists to use this form of therapy with more people who have autism. As we have seen first-hand, cognitive behavioral therapy teaches valuable skills to cope with a variety of issues in life, even beyond those posed by autism. Once again, we are grateful to God for leading us to a method and a therapist who can provide Alex with the guidance he needs so that he can overcome the obstacles of autism and lead a happier and more productive life.

“Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect.” Romans 12:2

A Mother's Work

Last week when I went to vote in the primary elections, a friendly woman who regularly works the polls greeted me by name. The mother of one of my high school classmates, she has known me since I was a teenager. One of the first questions she asked me was whether I was still teaching at the middle school, and I told her that I had retired from teaching. Her next question, which other people have also asked me after finding out I retired early, was, “What are you doing now?” I suppose many people my age would use early retirement as an opportunity to find a second career, engage in volunteer work, and/or travel the world. However, I answered her honestly, explaining that I am taking care of my adult son with autism. Essentially, I retired from teaching part-time to becoming a full-time personal assistant to Alex and Ed. Frankly, I have no idea how I ever had time to teach and am thankful I could retire early.

In one of my favorite episodes of the television show Little House on the Prairie, Laura expresses disappointment to Ma that getting married means she won’t be able to become a teacher. Her mother, who had also been a teacher, reassures her that as a mother, she will play a variety of roles, including being a cook, a nurse, and most of all, a teacher, to her children. Certainly, of the many jobs I perform in my role as Alex’s mom, teaching has been one of the most fulfilling. Since we opted to home school him throughout his school years, we have been responsible not only for teaching him practical life skills but also academics, as well. Based upon his keen knowledge in a broad range of subjects and his love of learning, apparently Ed and I did a fairly respectable job as Alex’s teachers.

In addition to teaching Alex, I continue to carry out a variety of responsibilities as his mother. Even though he’s legally an adult, in many ways he is childlike because of the obstacles autism presents. His difficulties with language require that we often must speak for him, and his fine motor delays, coupled with hand tremors caused by anti-anxiety medications, hinder his ability to do many things independently. Nonetheless, I’m fortunate to have more time to do things for him and grateful that he’s generally quite cooperative in working with me to accomplish what we need to do on a daily basis. However, before I became his mother, I never realized all the things that mothers, especially special needs mothers, do for their children. Here is a list of some of my many roles as Alex’s mom:

1. Finder of Lost Objects––Alex misplaces something nearly every day, usually his iPad or pens for making lists. However, he’s quite predictable in where he leaves them, which makes my job fairly simple. In fact, I can usually lift a couch cushion and find a treasure trove of Bic pens that have fallen between the cushions where Alex was sitting. The most amusing task he gives me at least twice daily is, “Need to find Daddy.” Fortunately, Ed is quite predictable, too, and can generally be found in the family room downstairs.

2.  Scheduler––In this role, I am responsible for making sure that appointments with doctors, the dentist, and therapists are made regularly, and I keep track of the Chicago Cubs baseball schedule as well as the NASCAR schedule for Alex. I must always know whom the Cubs are playing, where the NASCAR race is that week, what time the game/race is on television, and what channel will be broadcasting the game/race. Over the years, I have discovered that Alex is like a good lawyer: he never asks a question he cannot answer himself. If I make a mistake in the information I give him, he will call me on it. Hence, I double check my information to ensure my credibility as his sports information source. In addition, I am also responsible for making sure that calendars and clocks are accurate, which is very important to Alex (probably so that he won’t miss a minute of a baseball game or NASCAR race). If the house timekeepers are not precise, Alex will let me know that we need to change them immediately.

3.  Health Management––This is a job Ed and I share, as we take turns being Alex’s pharmacist in administering his medications and acting as his personal dental hygienist. However, we do our tasks differently. For example, Ed counts Alex’s pills as he gives them, whereas I recite their names. Also, Ed makes brushing teeth into a fun game show activity, whereas I count off the number of seconds he’s brushed as his electric toothbrush beeps every thirty seconds. Despite our different methods, both of us are grateful that Alex is not only cooperative about these important tasks, but he also faithfully reminds us when it’s time to take his pills or brush his teeth.

4.  Personal Groomer––Another one of my roles is to make sure that Alex is clean and neat so that he makes a nice appearance. As his barber, I cut his hair and shave his face, and as his hairdresser, I shampoo, blow dry, and comb his hair. Fortunately, he likes being groomed, so he sits eerily still, almost mesmerized, as I do his hair. In addition, I give him manicures and pedicures, put lip balm on him several times a day at his request, make sure he uses deodorant every day, as well as finding and cleaning his eyeglasses throughout the day. Moreover, I’m also his laundress and valet who makes certain his clothes are clean and assists him with selecting and putting on those clean clothes daily.

5.  Personal Shopper––Since Alex can’t drive (a fact he reminds us whenever he’s upset about his lack of independence as an adult), he relies upon Ed and me to chauffeur him wherever he needs to go. However, he prefers to leave shopping to me, so I’m responsible for making sure that he never runs out of orange juice, note pads, and Epsom salt, among other things. While milk, eggs, and bread are snowstorm staples for most homes, orange juice, note pads, and Epsom salts are must haves at our house.

6.  Speech Therapist––Language doesn’t come easily for Alex, so we constantly encourage him to talk to us. Often, he uses pat (or perhaps pet) phrases that we enthusiastically reinforce. For example, we heartily agree when he reminds us several times a day that he “had a young voice in 1994” or that “It gets hot in Phoenix.” Also, I have to assure him repeatedly that I’m not the lady wearing the blue dress in the Claritin commercial, even though we look somewhat similar. Honestly, I’d like to be as young and slender as she is, and I like that he thinks she looks like me. Besides trying to develop conversations skills, we also work on his manners, constantly reminding him to use the magic words of “please, thank you, and you’re welcome.” Lately, if Alex really wants something, he will make sure we’re eager to serve him by telling us all three, “Please, thank you, and you’re welcome,” before even making the request. Clearly, he’s learning the power of being polite.

7.  Food Services­­––Even though Alex’s appetite is not what it used to be, making sure that he eats a healthy diet daily within the parameters of his gluten-free and dairy-free restrictions is crucial. Consequently, I act as his cook and waitress throughout the day. Since he wants to know the menu, I also announce the daily specials as a maître d would, even though he wants to eat the same things every day. Because his hand tremors make eating some foods nearly impossible, I must also literally spoon feed him to make sure he eats enough. In addition, he likes to be part of the food preparation process, so I give him jobs to do as my sous chef and have him set the table and help clean up afterwards, which he enjoys doing.

8. Developer of Faith––Of all my jobs as Alex’s mom, helping him develop his faith is my most fulfilling and important. Seeing Alex’s faith and trust in God grow over the years has been gratifying because I know that faith will help him deal with all he will need to cope with in life. At the end of every day, the reward for completing my various tasks as Alex’s personal assistant is the opportunity to say bedtime prayers with him. As we thank God together for all of His goodness and ask Him to bless those we love, I’m awed by the peacefulness and sweetness of the moment and grateful for Alex’s childlike faith that gives him a sense of security before he falls asleep. As a mother, I’m immensely thankful I have been able to share with Alex the same faith my mother instilled in me so that he, too, can face the future with hope, confident that God loves him even more than I do. On Mother’s Day and every day, I can think of no greater gift.

“And I am certain that God, who began the good work within you, will continue His work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

Traveling Through the Dark

“Traveling through the dark, I found a deer…” William Stafford

Last Monday night, as Ed was coming home from taking sunset pictures at the Indiana Dunes, a deer suddenly ran in front of him on the dark highway. True to the saying, “like a deer caught in headlights,” the deer stopped in front of his car instead of continuing to run across the road. Fortunately, Ed was able to slow down enough that he didn’t hit the deer at fifty miles per hour. After doing some damage to the plastic pieces on the front of the car, the deer continued running on its way across the highway and into the woods.

Knowing that his encounter with the deer could have been much worse, Ed felt a brief sense of relief that was short-lived. Another car behind him apparently did not see his car stopped by the deer in time and rammed into the back of Ed’s car. Thankfully, neither Ed nor the other driver was hurt at all, but Ed’s car suffered more damage from the second hit. Using the cell phone I bought for him, despite his dislike of using the phone, keep charged for him, and insist that he carry just for circumstances like this, he called the police to file an accident report.

The police officers, like everyone we have dealt with in the aftermath of this accident, were exceptionally kind and helpful. When Ed came home in his drivable but damaged car and told me he’d been in an accident, my only concern was whether he had been hurt. After watching many medical shows over the years, I knew what questions to ask about potential symptoms of head injuries and whiplash and asked repeatedly if he should go to the emergency room to be checked. After reassuring me that he had come through the accident without a scratch, I thanked God for watching over him and keeping him safe.

The next day while Ed was at work, I handled phone calls from our insurance and the other driver’s insurance, taking careful notes so that I could relay the information to Ed. In addition, I spoke with the company that will provide a rental car while ours is being fixed as well as the body shop that will repair the car. Everyone I talked to was helpful and kind, beginning each conversation by showing concern, asking if Ed had been hurt in the accident. Once I told them that he was fine, they commented that as long as he was all right, nothing else mattered. I totally agreed with their assessment of priorities.

The following evening at dinner, I noticed a mark on Ed’s neck and immediately thought the seat belt from his car had either bruised or scraped him. After accusing him of minimizing an injury, Ed insisted that his neck was fine and went to the bathroom mirror to see where I was pointing. Apparently, my medical skills gained from television shows were lacking, as the “injury” I found was only a bit of chocolate from candy he’d been eating.

Not wanting to worry Alex, we have tried to keep our discussions about the accident minimal in front of him, but his acute hearing and fondness for eavesdropping made secrecy impossible. Not to mention, he overheard the assorted phone calls from the insurance companies in which we had to explain what had happened. As we told him about his dad’s car accident, Alex seemed to take the information seriously but calmly, especially since we reassured him that his dad was fine and that the car will be repaired.

With claims filed for insurance, estimates made of expenses, and parts being ordered to repair the car, now we just wait. After the initial flurry of concerns and details to be tended, Ed and I have viewed this experience in different ways. He’s frustrated that his car is damaged and will be in the shop for a week, but I’m thankful that he walked away from the accident totally uninjured. Moreover, I’ve reflected on how this accident is in some ways a metaphor for our life with autism. Like the deer, autism seemed to appear out of nowhere, impeding our path as we were traveling along through life. After facing autism head on, we have also encountered the second unexpected hit from behind in various ways: struggling to find professionals to help Alex, dealing with extreme anxiety and aggression, and working to heal his gastrointestinal issues. As if autism were not enough with its impact on language, motor, and social skills, the additional financial, mental health, and medical issues prove challenging to families like ours.

Nonetheless, just as the police officers and the employees of the insurance agencies, rental car company, and body shop have helped us in dealing with the aftermath of a car accident, therapists, doctors, researchers, and other parents have guided us in dealing with autism. While these experiences were new to us, others with more experience and expertise could help and guide us as to what we needed to do to move forward. Most importantly, we know that nothing comes as a surprise to God, who watches over us and guides us through every circumstance in life. While we don’t know what Alex’s future holds, we do know that God holds Alex’s future. Holding fast to our faith, we trust that God will guide us along paths we cannot see and help us move past obstacles, just as He always has, fulfilling the good plans He has promised.

“Thy word is a lamp unto my feet, and a light unto my path.” Psalm 119:105

Autism Awareness: The 2018 CDC Report

“We will fight, not out of spite, for someone must stand up for what’s right. ‘Cause where there’s a man who has no voice, there ours shall go singing.” ~ “Hands” by Jewel Kilcher and Patrick Leonard

A few days ago, as Autism Awareness Month nears the end, the U.S. Centers for Disease Control and Prevention (CDC) released a new report regarding how widespread autism is. [To read this report, please click here.] Based upon data collected by The Autism and Developmental Disabilities Monitoring Network (ADDM), the new rate of autism is the highest ever, with one in 59 children in the United States estimated to have autism.

According to the CDC report, the data collected by the ADDM focused upon children who were eight years old because most children with autism are diagnosed by age eight. However, the report is typically published four years after the survey year, which means those children in the current report are now twelve years old.

Perhaps more enlightening is to observe the increase of autism in the past decade as shown in the ADDM data. [To read this CDC report, please click here.] Specifically, the data on autism prevalence is as follows:

In the 2009 report on 2006 data, the rate of autism was 1 in 110 U.S. children.

In the 2012 report on 2008 data, the rate of autism was 1 in 88 U.S. children.

In the 2014 report on 2010 data, the rate of autism was 1 in 68 U.S. children.

In the recent 2018 report on 2014 data, the current autism rate is 1 in 59 U.S. children.

Despite these significant increases, the CDC doesn’t seem terribly concerned and only offers two suggestions––early diagnosis of autism and early intervention. However, the CDC report also notes that the median age for the earliest diagnosis of autism is 52 months. Apparently, this figure is relatively the same for both genders and all ethnicities. While 85% of children with autism have documented mentions of developmental concerns by age 36 months, only 42% had been thoroughly evaluated for autism by 36 months.

While early diagnosis and intervention is certainly a good idea, clearly this is not happening. Perhaps more doctors need to be trained in recognizing early signs of autism, and more resources need to be available so that children can benefit from early assessment and intervention. However, with the rapidly increasing numbers of children who have autism, the waiting lists for autism intervention services are also increasing.

In the Public Health Action section of the CDC report, the agency notes that because of the prevalence of autism, “…the need for behavioral, educational, residential, and occupational services remains high, as does the need for increased research on both genetic and nongenetic risk factors for ASD.” Sadly, most of the government-funded research offers little hope toward finding a cure for autism. Consequently, even more government funds will be needed to treat, teach, house, and employ the increasing number of children and adults with autism. At what point will the CDC recognize that autism is a major health crisis in this country?

In response to the recent CDC report, Time magazine published an article online on April 26, 2018, entitled “This May Be Why Autism Diagnoses Are On the Rise, According to the CDC.” [To read this article, please click here.] Written by Jamie Ducharme, the article notes that, according to the CDC, the highest ever rates of autism are probably due to better diagnosis and reporting of autism, especially in the black and Hispanic communities. However, the CDC report actually indicates that age of diagnosis for all ethnicities is fairly similar. Nonetheless, this article perpetuates the myth that the actual rate of autism isn’t increasing; only better diagnosis and data could possibly have caused the increase. To further the improved diagnosis cause, the author quotes a chief medical officer at the CDC, Dr. Stuart Shapira: “It’s likely in part due to better identification, more screening and referral to services.” Even Dr. Shapira hedges the better diagnosis reasoning as the cause for autism increases with his “likely in part” qualification.

Offering only the suggestion of better diagnosis and data for the rising autism rates, the author also echoes the CDC stance on the importance of early diagnosis and intervention. The article quotes CDC expert on developmental disabilities Dr. Daisy Christensen: “The soonest a child can be identified and connected to services, the better chance they have at reaching their full potential.” Again, because so many children have autism now, many must wait to be evaluated, and even after they receive autism diagnoses, they must wait longer to receive funding and services they desperately need. In an ideal world, children would receive autism diagnoses as soon as possible and then immediately begin receiving therapies to develop their skills. In a truly ideal world, no child would have autism.

Ironically, the CDC motto is “Saving Lives, Protecting People,” yet the CDC has failed to make significant progress in determining the true cause of autism. As a result, many children with autism have drowned in deep water and been hit by cars as they wandered from places of safety. Others have struggled with serious medical conditions, such as seizures and severe gastrointestinal disorders. Still others deal with anxiety, bipolar disorder, and OCD. These people with autism, nearly half of whom cannot speak, must be protected.

As we near the end of another Autism Awareness Month, the CDC appears to be no closer to solving the puzzle of autism. We need to stop counting eight-year-old children with autism and figure out how to help them and all the other people with autism. Furthermore, the CDC must allocate funds more judiciously to find the cause of autism in order to find a cure. In less than ten years, the rate of children with autism has nearly doubled. Those eight-year-old children with autism grow up to be adults with autism. Ignoring or even minimizing this public health crisis will not come to a good end. As the parent support group Talk About Curing Autism wisely proclaimed in response to the CDC report last week: “It’s time to care.”

“The Lord hears His people when they call to Him for help. He rescues them from all their troubles.” Psalm 34:17

Person-Centered Planning

On Friday, we had our regular quarterly meeting with Alex’s support team. Like IEP and case conference meetings held for students, the quarterly meetings allow us as parents to discuss Alex’s progress, gain input from the professionals who work with him, and make plans to keep him moving forward. Since Alex is doing well, especially considering that he has been able to have doses of three medications reduced successfully and one discontinued completely in the past year, we anticipated that the meeting would go smoothly. In addition, we are blessed to have fantastic support professionals who not only know how to bring out the best in Alex, but also celebrate with us the achievements he is making along the way.

The State of Indiana has recently begun person-centered planning with clients who have disabilities, so we knew this would be a primary focus of our meeting. Using a model called Life Course Tools (which is available online at lifecoursetools.com), the state has begun developing portfolios for “Charting the Life Course,” which is a lengthy process. Case managers are expected to discuss with individuals and their families eight life domains: daily life employment, community living, social and spirituality, healthy living, safety and security, citizenship and advocacy, supports for family, as well as supports and services. By asking various questions, the goal is to develop a plan for the future, a “life vision,” that allows a “full, inclusive, quality life in the community.”

Having read the materials online prior to our meeting, I was uncertain how Alex might answer these questions, especially since some of them seem rather abstract. However, he did amazingly well at providing the information needed to begin developing his plan for the future. With the reduction of medications, we have noted that Alex has been able to answer questions with less reliance on us to speak for him. He’s more alert and more decisive; moreover, his eye contact, volume, and speech have improved greatly. As he answered various questions, he looked at the person speaking to him, spoke up, and used complete sentences to convey clearly his ideas. His calm manner reflected his improved social skills, and his ability to express himself without asking us, “What would be good?” showed increased independence.

Noting his improved social skills, we explained that Alex is learning to use manners without constantly being reminded. When we asked him why that was important, he said that he didn’t want to be “rude” and then commented that not using manners is “disrespectful.” He displayed politeness by not interrupting others and by answering any questions asked of him, showing that he was paying attention and wanting to engage with other people. Moreover, he never complained that the meeting was taking too long, as he has at times in past meetings.

To gain insights into Alex’s priorities, his case manager asked him what kinds of things he enjoys. He listed "game shows, Walmart, Nanny’s house, and V.U." When asked for more specific details, he said that he likes The Price Is Right and Wheel of Fortune, shopping at Walmart because it’s a big store, going to his grandparents’ house because it’s “special,” and going to basketball games at Valparaiso University. His response came as no surprise to us, knowing what’s important to him. When asked what he likes to do, he said hiking at Coffee Creek (a nature preserve near our home) and going to concerts in the park. When he was asked what he’s good at, he immediately said math, and when asked about his ideal job, he said meteorologist. Some things never change; he has loved math since he was little and has told us for more than twenty years that he’d like to be a meteorologist someday. His love of numbers and weather has never waned over the years, and he clearly knows what he finds interesting. When we were asked what types of jobs we thought Alex might do someday, I mentioned that his computer skills, especially his excellent keyboarding skills, along with his attention to accuracy and details, might be used well in a job involving computer coding. His case manager seemed to think that could be a good match of his interests and abilities.

When discussing future living arrangements, his case manager asked Ed and me where we thought Alex would live “for the rest of his life”—at home with us, in a group home, or in supported living with a roommate and a caretaker in an apartment. A few years ago, we were told that Alex would likely live with us until we’re in our eighties because funding and housing for adults with disabilities is limited primarily to those with greater needs. We decided that we would make the best family life possible knowing that Alex will live with us for many years, and we are fortunate that he is quite pleasant 99.9% of the time. However, the “for the rest of his life” part of the question seems tricky.

While Ed and I confidently said, “I do” in our marriage vows with the stipulation “for as long as we both shall live” without hesitation, thinking about the rest of Alex’s life is different. For one, he is likely to outlive both of us, and we worry about who will care for him once we’re gone. In addition, autism has taught us to live one day at a time, one step at a time, one milestone at a time. Looking down the road too far can be overwhelming, thinking of all the skills to master and things to do, so we focus on accomplishing one thing at a time. Planning for the future is not the same with a child who has autism.

Moreover, I wondered how our response to the living arrangements inquiry reflects upon us as parents. If we want him to live at home with us, does that make us overly protective parents or simply caring ones? If we want him to be in a supported living arrangement with a caretaker, does that make us selfish parents or simply ones who want him to be independent? As the emotional mother, I responded that we thought Alex would probably live at home with us for a long time, and we are happy to have him here. As the rational father, Ed wisely added that we want Alex to be as independent as he can be and hoped that someday he might be able to live on his own. Knowing that is ultimately what’s best for Alex, especially since we may not always be able to care for him, I agreed with Ed.

Ironically, I thought the difficult part of person-centered planning would be getting answers out of Alex, but he had less trouble responding to the questions than I did. He has developed a clear sense of his likes and dislikes and strengths and weaknesses and has learned to express what he wants and needs. However, I over think things too much and should take a cue from Alex about just answering candidly. I’m sure this process of developing his Life Course plan will make me ponder many aspects of Alex’s life, and I hope I gain more insights along the way.

Apparently, his case manager was quite pleased with how well the meeting had gone, as she told us more than once how “easy” we had made things for her and remarked that we had given her quite a bit of good information to include in Alex’s portfolio. Moreover, she commented that she rarely sees “success stories” in her field, but that Alex has, indeed, been a success story with the progress he has made. Interestingly enough, Alex’s behavioral therapist used that same phrase recently, when she told me that she will be presenting Alex’s “success story” at her company’s annual meeting next month. To think that six years ago, we were overwhelmed as to how to help Alex overcome his extreme anxiety and aggression, and that now his team views him as a rare success story is truly a blessing. As we continue to look forward to Alex’s future, whether it be in the coming days, weeks, months, or even years, we thank God for the wonderful people He has sent to help Alex and for the prayers He has answered and will continue to answer to help Alex succeed.

“May He grant your heart’s desires and make all your plans succeed. May we shout for joy when we hear of your victory and raise a victory banner in the name of our God. May the Lord answer all your prayers.” Psalm 20:4-5

What Science Says About Autism

Last week I found two links to websites I thought would offer insights into possible causes and treatments for autism. Unfortunately, I was disappointed. However, the information from these links is worth sharing because both sites reveal bias and attitudes some scientists and doctors hold regarding autism research. Moreover, they demonstrate the limitations in providing care for patients with autism offered by those who ascribe to these viewpoints.

In the first article, “Autism Awareness Month: All The Things That Don’t Cause Autism,” microbiologist Dr. Alex Berezow condescendingly eliminates various potential causes of autism except genetics. This article, which was published April 5, 2018, on the website for the American Council on Science and Health, of which Dr. Berezow is Senior Fellow of Biomedical Science, uses inflammatory language to prove his point. Specifically he refers to one theory as being believed by “at least one lunatic” and notes that some parents “stink” at parenting skills. [To read this article, please click here.]

Especially incensed by the theory that vaccines cause autism, he attacks Dr. Andrew Wakefield’s “study” [Dr. Berzow’s use of quotation marks, not mine] as a “sham” and calls Dr. Wakefield a “fraud.” So certain is Dr. Berezow that no link exists between vaccines and autism, he asserts, “A substantial proportion of people refuse to accept the reality that vaccines do not cause autism.” Perhaps so many people disagree because his declaration may not be “reality.”

While Dr. Berezow goes on to name various environmental factors, such as immune factors, pollution, and pesticides, he believes that their effect upon autism is marginal. Moreover, he states that pesticides are “used at safe levels in the U.S.” and that the “U.S has some of the cleanest air in the world.” Perhaps he sees toxins as less of a threat to health than many autism parents do. Apparently, Dr. Berezow has autism all figured out–-it’s “50% to 95% genetic.” That strikes me as a wide range, and I’m curious as to what the other 50% to 5% may be. Finally, he warns those who fail to heed his infallible expertise regarding genetics as the only cause of autism: “Be skeptical of claims to the contrary.”

The second website also proved to be less than helpful. The Association for Science in Autism Treatment’s (ASAT) website purports to offer medical professionals “an array of resources that will keep you apprised of the state of the science with respect to the hundreds of treatments for autism, many of which are biomedical in nature.” [For a link to this website, please click here.] Despite their motto, “Real Science, Real Hope,” there doesn’t seem to be much hope offered on this website.

In the summaries of biomedical autism treatment, only one method is listed under “What works or needs more research”: selected medications, specifically psychotropic medications, such as Risperdal, Ritalin, Prozac, and Abilify. Recommending these drugs for severe aggression, hyperactivity, and other disruptive behaviors, this website notes that these medications are effective interventions for some people with autism. Certainly, medications can be helpful with difficult behaviors found in autism, but these medications can also have negative side effects, and offering only medications as biomedical treatment gives few options to doctors and their patients.

In contrast, twelve biomedical treatments are listed as “What doesn’t work or is untested”: anti-fungal and anti-yeast medication, chelation therapy, craniosacral therapy, herbs and homeopathic treatments, hyperbaric oxygen therapy, iridology, magnets, marijuana, neurofeedback therapy, secretin, special diets, as well as vitamin and supplement therapy. These methods are likely listed because anecdotal evidence shows that parents have found these methods helpful to their children with autism. However, this website destroys the credibility of each of these treatments one by one, explaining how they are of little or no use.

For example, anti-fungal medications to treat yeast infections in the digestive system have been critical to Alex’s health and well being when he has had Candida overgrowth, evidenced by thrush infection in his mouth. When he has yeast infections, he is irritable and agitated, probably because he doesn’t feel well. Nonetheless, ASAT discounts ant-fungal medication as “untested as a treatment for autism spectrum disorders” and suggests that medical professionals warn families about potential side effects of the medication.

Additionally, we pursued chelation therapy with Alex because he had high levels of the toxins arsenic, lead, and mercury in his system. However, ASAT states: “It is doubtful that individuals with autism spectrum disorder have high levels of heavy metals or that chelating agents would be effective in reversing neurological damage from metal exposure.” Furthermore, ASAT describes chelation therapy as “implausible and unacceptably risky” because it “may cause severe side effects and even death.” They conclude that chelation therapy is an “inappropriate treatment for autism spectrum disorders.” However, allowing toxic metals to remain in the body of a child with autism can also cause severe side effects and even death. To discount the possibility that toxic levels of heavy metals exist in children with autism is to ignore a serious health issue. Doctors need at least to test for heavy metal toxicity before discounting chelation therapy.

Another treatment method ASAT discourages is special diets, such as the gluten-free and casein-free diet, based upon two studies that “found no evidence of benefit from the gluten-free, casein-free diet.” Furthermore, ASAT states, “There is a risk that removing gluten and casein from an individual’s diet will lead to inadequate nutrition…” Consequently, ASAT recommends, “Professionals should present diets as untested as a treatment for autism spectrum disorders…”This stance fails to recognize that many children with autism have allergies or sensitivities to glutens found in grains and caseins found in milk products and benefit from removing these foods from their diets. Certainly, people with autism should be tested for gluten and casein intolerance before dismissing special diets as treatment for autism. Moreover, the study I cited in last week’s blog entry indicates that special diets prove quite beneficial for people with autism; apparently, ASAT has not yet read that extensive research report.

Similarly, that same research report cites the value of vitamin and mineral supplements, yet ASAT does not recommend nutritional supplements to treat autism. Specifically, they describe vitamin B6, magnesium, and omega 3 fatty acids as “ineffective in changing behavior.” Additionally, they note that vitamin B12 and carnitine show “little evidence of positive effects on behavior.” Perhaps they need to do more extensive research before discounting the value of nutritional supplements instead of relying on only a few studies. In addition, people with autism should be tested for nutritional deficiencies before determining they will not benefit from vitamin, mineral, essential fatty acid, and amino acid supplements.

Essentially, ASAT offers only one biomedical treatment––psychotropic medications––while dismissing several other treatments that may, indeed, be helpful to patients with autism. By encouraging medical professionals not to recommend these treatments to their patients with autism, families may miss out on methods that would help their children with autism. Until a definitive cause of autism can be established (and unlike Dr. Berezow, not everyone is convinced genetics is the only cause), patients with autism should have a variety of treatments available to address their various medical and nutritional needs. The availability of simple tests to assess medical conditions commonly found in autism, such as yeast overgrowth, heavy metal toxicity, food allergies, and vitamin deficiencies, makes diagnosing these issues easy. However, doctors must be willing to look for medical causes of behaviors found in autism and be willing to treat them with those methods ASAT discounts as “untested” or “unsupported by research.”

When people with autism have proper medical treatment and can regain their health, they are likely to feel better, behave better, and learn better. Despite the scientific training of those like Dr. Berezow and the medical professionals behind ASAT, they fail to see that medicine is an art as well as a science. Patients with autism must be treated as individuals whose needs should be evaluated and addressed. Ignoring medical problems not only hinders their progress, but it also impairs their quality of life. Consequently, parents must advocate for their children’s health with their children’s doctors to make certain they receive necessary treatments, seeking the healing they so desperately need, and remembering that God’s healing power is not limited by research studies.

“Stretch out your hand with healing power; may miraculous signs and wonders be done through the name of your holy servant Jesus.” Acts 4:30

Autism by Numbers

Today, the first of April, begins another Autism Awareness Month. Despite rising numbers of children being diagnosed with autism and increasing costs of caring for people with autism, little progress is being made to find a cure. Although Alex is more skilled with data and numbers than I am, I have found eye-opening statistics that provide true autism awareness.

According to the U.S. Centers for Disease Control and Prevention website on Autism Spectrum Disorder (ASD) Data & Statistics:

Approximately 1 in 68 children, or 1.5%, in the United States had autism, based on 2012 data.

ASD was 4.5 times more common in boys (1 in 42) than in girls (1 in 189), according to 2012 data.

[According to the 2016 National Health Center for Health Statistics: 1 in 36 children, or 2.24%, had autism, including 1 in 28 boys with autism.]

Autism occurs in all races, ethnicities, and socioeconomic groups, according to 2010 data.

The average prevalence of autism in Asia, Europe, and North America was 1-2% of the population, based upon data collected between 1966 and 2016.

The total cost per year for children with autism in the United States in 2011 was estimated to be $11.5-60.9 billion. These costs include medical care, special education, and lost parental productivity, that is, parents who must quit their jobs or work fewer hours in order to care for their children with autism.

The average annual Medicaid costs in 2005 for children with autism were $10,709 per child, which were six times higher than the average annual Medicaid costs for children without autism at $1812.

The average annual medical expenses in 2007 for privately insured children with autism were $4,110-6,200 higher than annual costs for children without ASD.

Intensive behavioral interventions for children with autism cost $40,000-60,000 per child per year in 2011.

According to the research article, “Costs of Autism Spectrum Disorders in the United Kingdom and the United States,” published in the Journal of the American Medical Association Pediatrics on August 2014 by Buescher et al:

The cost of supporting a person in the United States with autism and intellectual disability during his or her lifetime is $2.4 million. If a person has autism but does not have an intellectual disability, the cost is $1.4 million over a lifetime.

The largest costs for children with autism include special education and parental productivity loss. However, the largest costs for adults with autism include residential care/supported living accommodations and individual productivity loss since many people with autism cannot find employment. In addition, medical costs are much higher for adults with autism than for children with autism.

The cost of supporting children with autism in the United States is $61-66 billion per year; the cost of supporting adults with autism in the U.S. is $175-196 billion per year.

In the United States, the cost breakdown for people with autism includes 79% for services, 12% for the productivity costs for the individuals with autism, and 9% for the caregiver time costs.

According to the article, “Economic Burden of Childhood Autism Spectrum Disorders,” published in Pediatrics on February 2014 by Lavelle et al:

Educating a child with autism costs approximately $8610 more than a typical child each year.

According to Talk About Curing Autism’s website:

Of the National Institutes of Health’s 2011 $30.5 billion budget, only 0.6% was allocated to funding autism research. Despite the increasing prevalence of autism spectrum disorders, autism receives significantly less funding than other childhood conditions, such as muscular dystrophy, juvenile diabetes, leukemia, and pediatric AIDS.

Although today may be April Fool’s Day, this is no joke. We must stop this autism epidemic and find ways to help the children and adults dealing with the obstacles this condition places upon their lives every single day. Perhaps those who are unmoved by the day-to-day struggles people with autism and their families face may realize that staggering economic costs will overwhelm federal and state budgets unless a cure is found. Our country cannot afford the financial and personal costs autism places upon this nation.

Whenever I feel frustrated, wondering how such an insurmountable problem can be solved, I remember that God is not overwhelmed by the number of people with autism or the costs of caring for them or the lack of funds being spent to find a cure for autism. A plaque on my desk reminds me of God’s ability to solve any problem: “Today God is able to do more than I can ask or imagine.”

Alex never doubts that God will take care of him because he believes in the Resurrection that we as Christians celebrate today on Easter. Yesterday, when Ed asked him to name the best thing about Easter, without hesitation, Alex replied, “It’s when Jesus came back to life.” That same God who resurrected Christ can bring healing and hope to those with autism and their families, for through the struggles, our children bring glory to God.

“As Jesus was walking along, he saw a man who had been blind from birth. ‘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 9:1-3

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