Sunday, March 27, 2016

Out of Darkness Comes the Light

This past week, I have been on spring break from teaching, yet the rest of our family’s schedule has basically remained the same. Ed, who was on spring break from teaching at the university earlier in the month, had to go to work in the afternoons, and Alex’s schedule of afternoon therapies continued as usual. Trying not to interfere with the morning routine Ed and Alex have established, I stayed out of their way. Despite my best attempts not to rock Alex’s boat, he seemed to find my morning presence annoying, acting irritable and even feisty with me at the time when I would normally be coming home from school. As I tried to help him get ready for his various afternoon appointments, he did not want to cooperate and preferred trying to argue with me instead.

One morning I walked away from him and found him waiting outside the bathroom door for me, ready to continue a disagreement I thought I had already settled. Usually, Alex is eager to see his support team members so that he gives me no trouble when I remind him that he needs to brush his teeth and comb his hair, but this week he wanted to balk at everything I told him to do. To let me know his displeasure, he would play the passive-aggressive game of simply staring at me when I told him to do something or grabbing my hands to get my attention. Using all the tools his therapists have given us, I would calmly redirect him with the reminders of “making good choices” and “respecting personal space.” When that didn’t seem to move him physically or emotionally, I resorted to my no-nonsense middle school teacher voice and informed him that he would be grounded for the day if he didn’t follow my directions.

Of course, in my analytic mind I’ve also been trying to figure out why Alex decided to challenge me when he is normally docile and compliant. Could this be a developmental phase he needs to go through? Was he unhappy that his typical schedule was changed because I was home instead of at work? Were there environmental changes, such as air pressure, the full moon, or allergies, bothering my human barometer son? Was he not feeling well, perhaps irritated by the discomfort of thrush in his mouth again? After trying to ask him questions when he was not moody, I could get no definitive answers for why he was giving me a hard time, other than because “Mommy is shorter than Alex.” Since that isn’t going to change, I decided to look in his mouth and found the telltale signs of yeast overgrowth, called his doctor for a prescription of antifungal medication, and gave him Diflucan. Soon, he showed signs of healing and thankfully became more pleasant with me.

I have been told that people with Alzheimer’s disease and children with autism show hostility to the person who loves them the most because they know that person will forgive them, no matter what. Alex knows that he can always say he is sorry for his behavior, and I will always readily accept his apology and never hold a grudge. He knows that my love for him is unconditional. He also knows that about his dad, but apparently, I get the “favored” treatment because “Mommy is shorter than Alex.” Nonetheless, he and I share an unbreakable bond that allows us to enjoy each other’s company the vast majority of the time and to work out our differences. I truly believe that Alex knows that I always have his best interests at heart, even when he’s not happy with me for pushing him to be his best. He also knows that I will cheer him on every step of the way, and I will do everything in my power to protect him from harm.

Last weekend, Alex and I enjoyed watching a television presentation of The Passion, a modern-day interpretation of the last week of Jesus’ life. As we watched the events leading up to the crucifixion and the resurrection, Alex enjoyed the music the most, swaying and trying to sing along to the contemporary songs used to tell the story. However, I found myself drawn to the portrayal of Mary, Jesus’ mother. Being raised in the Protestant Church, I viewed the importance of Mary only at Christmastime as the young woman who gave birth to the Messiah. However, The Passion made me think about her role as the mother of an adult son facing tremendous suffering, and I wondered how she found the strength to watch her son suffer in pain and die, even knowing that he would be resurrected. According to the Gospels, she was there when Jesus was crucified. Only in the Gospel of John do we see Jesus acknowledge her as he is dying: “When Jesus saw his mother standing there beside the disciple he loved, he said to her, ‘Dear woman, here is your son.’ And he said to this disciple, “Here is your mother.’ And from then on this disciple took her into his home.” (John 19:26-27)  Before he died, Jesus wanted to make sure his beloved mother, who was there to support him to the end, would be all right. The tenderness of that moment moves me deeply.

On Thursday, after helping Alex through some unexplained anxiety, I took him to music therapy, where his therapist was able to further reassure and calm him. As I waited during their session, I could hear the soothing words of the familiar Beatles’ song, “Let It Be”: “When I find myself in times of trouble, Mother Mary comes to me, speaking words of wisdom, let it be. And in my hour of darkness, she is standing right in front of me, speaking words of wisdom, let it be.” In those lyrics that Alex and his therapist only occasionally include in their therapy time, I also found comfort. “And when the night is cloudy, there is still a light that shines on me, shine on until tomorrow, let it be.”  Despite the occasional setbacks––the cloudy nights––the light of hope pushes me forward to help make Alex better. Sometimes all I need to do is wait––to let it be––until the time is right.

As we celebrate Easter today, I’m reminded of the hope we find in the resurrection. Before his crucifixion, Jesus prepared his disciplines for what was to come, saying, “Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.” (John 16:22)  From the grief of Good Friday, Jesus fulfilled that promise to return, bringing the joy of Easter Sunday through the resurrection and giving us eternal life through his sacrifice. Although I don’t know what the earthly future holds for Alex, I am certain who holds his eternal future, and I can be sure that He, who gave His only son, has unconditional and perfect love for my son, which gives me peace.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

Sunday, March 20, 2016

Autism and Health: A Challenge

This month, a comprehensive analysis was published highlighting the problems parents have finding help for their children with autism. Jane Willis and Yara Evans from Queen Mary University of London released the findings of their surveys from two years ago in a thirty-page report entitled “Health and service provision for people with Autism Spectrum Disorder: A survey of parents in the United Kingdom, 2014.”  To read this full report, please click here.] At the time they surveyed 264 parents and caregivers about their experiences of caring for children with autism, more than 600,000 people with autism were living in the United Kingdom. As I read the report, I noted that parents in the United Kingdom face the same issues that autism parents encounter in the United States.

Under the topic “Challenges faced and severity of issues,” more than 80% of the parents listed five specific challenges out of a list of 22, and the majority described all of these issues as “very significant.” These concerns included the following:

1.  anxiety/fearfulness/avoidance behaviors

2.  irritability (low mood, oppositional behaviors, tantrums, lack of flexibility)

3.  sensory sensitivity (light/sound/touch/abnormal pain sensitivity)

4.  agitation/stimming behaviors

5.  sudden negative changes in behavior

Although behaviors appear to be the primary challenges parents face, the survey indicates that 87% of parents sought treatment from health care professionals for various issues and often found little or no help. The surveys revealed that parents consulted doctors for help with dietary and nutritional issues, gut issues, behavioral issues, sleep problems, toileting issues, seizures, and other issues without getting satisfactory assistance. Parents noted that many doctors lack knowledge about autism, and some did not take their concerns seriously, dismissing them as “just autism.”

With little support from medical professionals, parents of children with autism often seek other interventions, trying to help their children. This survey found that ninety percent of the parents had used dietary interventions or modifications for their children with autism. The top two diets used were the gluten-free diet (94% of those who used dietary modification) and the casein-free diet (90% of the parents who implemented dietary changes). Some parents use a combination of dietary modifications; we have used the gluten-free and casein-free diet with Alex for seventeen years. Of those parents who used dietary interventions, 92% reported some level of improvement (life-changing, significant, or slight) in their children with autism. Some of the benefits of dietary intervention that parents noted were improved communication skills, better eye contact and sociability, calmer and more compliant behaviors, improved sleep, greater focus, and fewer allergy and digestive issues.

In addition to dietary changes, 90% of the parents in this survey indicated that they had used nutritional supplements with their children. The four types of supplements most used included fish oils/essential fatty acids, vitamins, digestive and gut support, and minerals. Of the parents who used nutritional supports, 87% noted improvement at some level. These benefits are similar to those of the dietary interventions, such as better behavior, including being calmer and more focused, improved eye contact, and fewer digestive issues. Interestingly, parents who used nutritional supplements reported using more than one; in fact, nearly half used 6-10 supplements. Several of them also mentioned using dietary intervention along with nutritional supplements and felt that both had helped their children.

Besides dietary and nutritional interventions, parents also relied upon traditional medicine with 62% of parents reporting their children had been given prescription medications. The top three types of prescriptions listed are antibiotics, anti-fungals, and anti-virals. Considering that children with autism often have immune system issues, these medications would be necessary to help them deal with various types of infections. Parents generally found these prescriptions to be helpful, as 72% reported some level of improvement in their children after taking the medicine.

Despite the success of these medications, many parents of children with autism also seek alternative therapies to help their children: 72% of those surveyed indicated that they had tried alternative methods, and 87% of those parents reported some level of improvement. From a list of 33 different alternative therapies (several of which we have tried with Alex at one time or another), the top alternative therapies used included the following: homeopathy, ABA (Applied Behavior Analysis), HBOT (hyperbaric oxygen therapy), and CST (Cranial-Sacral Therapy). Those parents who used alternative therapies cited benefits, such as improvement in sensory issues and reduced anxiety.

Finally, the survey asked parents what changes they would like to see to assist them in helping their children with autism. Their top five recommendations for changes needed include the following:

1.  Improved relationships between parents and professionals

2.  An end to discrimination (treating children with autism differently than typical children and recognizing their medical needs) in service provision

3.  A better understanding of autism

4.  Better education and training for professional staff

5. More thorough investigations of the problems involved (such as recognizing that behaviors may have a medical cause)

After reading this comprehensive and insightful report, I was impressed with the information the researchers and the parents shared. Clearly, parents are not getting the support they need from the majority of medical professionals, who lack knowledge of autism and who may see it only as a psychological issue instead of a medical condition that can be treated to improve behaviors. With the increasing rate of autism, medical professionals need training to understand various issues concerning autism so that they may treat their patients appropriately. In the meantime, parents must educate themselves in alternative methods and therapies so that they can help their children get better. Our children deserve no less.

“An unreliable messenger stumbles into trouble, but a reliable messenger brings healing.” Proverbs 13:17

Sunday, March 13, 2016

Chatting with Alex

When Alex was little and had very limited language, we prayed for the day when we could carry on a conversation with him, and we worked hard on his speech skills, hoping to make that goal a reality. The other day, his behavioral therapist commented that she has noticed significant improvement in Alex’s speech and specifically mentioned that his sentences have become much longer as these skills have developed. What is also notable is that he wants to interact with us and tell us what he has thought or observed; often he wants to tell us something he finds interesting. Sometimes, he’ll come running up or down the stairs to find us and eagerly share something that’s on his mind.

Since speech still does not come easily for Alex, he often relies upon familiar favorite topics, especially those related to numbers, such as dates, ages, prices, and statistics. He also likes the predictable, so our conversations often resemble a scripted comedy routine, much like the “Who’s on First” bit by Abbott and Costello. While I suspect that my role is the straight man, Alex, the funny guy, seems to find our banter quite amusing and usually walks away afterward smiling and chuckling. Even though we might have essentially done the same script one hundred times or more, creating a sense of déjà vu, he still finds the conversation funny every time.

Usually the catalyst for our chats lies in the appearance of a number that has significance to Alex. For example, when the thermometer registers sixty-three degrees, Alex lights up and engages me in a routine discussion about the heights of his female relatives.

Alex: “Sixty-three! That’s like Mommy’s, Aunt Tammy’s, Aunt Babs’, and Aunt Pat’s height in inches!”

Me: “That’s true!”

Alex: “Is Nanny 5’1 ½” or exactly five feet and 15/16” tall?”
Me: “What do you think?”

Alex: “Exactly 15/16.”

Another trigger number for Alex is twelve, which sends him on a nostalgic journey to childhood along with some musing about another interest, the sound of people’s voices. He refers to higher pitched voices, such as those of children and some women, as “little voices,” which he finds pleasant.

Alex: “Twelve! [Referring to himself in third person] Alex had a little voice when he was twelve. That’s like the number of hours in a half day.”

Me: “That’s like the number of eggs in a dozen.”

Alex: [Cousin] “Hannah had a little voice until she was eleven. Why does Mommy say she was ten?”

Me: “I like to round numbers.” Alex finds my mathematical carelessness amusing.

Dates hold a special place in Alex’s heart because he loves calendars and has a gift for memorizing special dates, such as birthdays. When he hears the mention of dates from the past on the news or on Jeopardy, he immediately associates the year with something he remembers fondly.

Alex: “2000! That was the first year that began with a two.”

Me: “That’s true.”

Alex: “Gas prices were $1.04 in 2000.”

Me: [Teasing him]“Approximately or exactly?”

Alex: “Exactly!”

While numbers usually move him to begin a chat, sometimes a word that he associates with a number can also motivate him to engage me in conversation. He has a fascination with Phoenix, Arizona, probably because its climate is so different from ours. When he hears it mentioned on television, he and I go into the following routine. (Since today’s NASCAR race takes place in Phoenix, I anticipate that he and I will repeat this discussion at least a dozen times this afternoon.)

Alex: “Phoenix! It gets hot in Phoenix.”

Me: “Yes, it does get hot in Phoenix.”

Alex: “How hot?”

Me: “Around 100 degrees in the summertime.”

Alex: “One hundred degrees or 112 exactly?”

Me: “Exactly 112 degrees.” Satisfied that he has trained me in data precision, he will smile.

Yesterday evening, we went to one of our favorite family restaurants, where the hostess, Kayla, and Alex are on a first-name basis because she always engages him in friendly conversation. Even though he didn’t have a script for their chat, he managed to answer her questions and make his feelings clear.

Kayla: “Alex, would you give your meal five stars tonight?”

He thinks about this seriously.

Alex: “Four point five.”

Kayla: “Four point five?”

Alex: [Trying to make her feel better] “That’s ninety percent.”

Kayla: “What could make it five stars next time?”

Alex: “Serve shrimp.”

Kayla: “If I give you a whole plate of shrimp next time, what will you rate it?”

Alex: “Five stars.”

Although words still do not come easily to Alex, we are thankful for the progress that he has made through the years and for the confidence he is developing in his ability to express himself, even in unscripted situations. As much time as he spends thinking, reading, and mulling over details, we believe that he probably has a lot more to say. In the meantime, we enjoy our conversations with him, even those we have had numerous times with him, knowing how much he enjoys talking with us and other people. As God continues to heal Alex, we wait with patient anticipation, knowing that we will be rewarded when Alex’s voice can freely speak the words he wants to say.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Sunday, March 6, 2016

Perceptions of Children's Mental Health Issues

Yesterday I ran across an interesting online article published this week by the Huffington Post entitled “Why Every Parent Needs to Start Caring About Children’s Mental Health.” The author, Angela Pruess, a child and family therapist and a special needs parent, notes the stigma often attached with mental health conditions and emphasizes the need for greater understanding and awareness. [To read this article, please click here.] She explains that she has observed stigma both as a therapist of children and as the parent of a four-year-old daughter with anxiety and sensory processing issues. Perhaps if other people were less judgmental and better informed, she suggests, parents of children with mental health issues would be less ashamed and embarrassed.

The stigma associated with mental health issues that the author describes came as no surprise to me as the parent of a child with autism, a condition described in detail in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. In addition, Alex has also been diagnosed with anxiety and obsessive-compulsive disorder, two condition often associated with autism that are classified as mental disorders. While we have chosen to be candid about Alex’s condition, hoping to help other parents like us and bringing awareness to those unfamiliar with autism spectrum disorders, some parents keep their children’s condition secret, perhaps because of the fear of stigma. Some parents never use their children’s names in writing or speaking about them, using nicknames or pseudonyms, and others even hesitate to use the term autism when describing their children’s condition.

What did surprise me about this article was the statistic the author provides regarding the frequency of mental health issues in children. She cites research from the National Institute of Mental Health that shows “just over 20 percent (or 1 in 5) of children, either currently or at some point during their life, have had a seriously debilitating mental disorder.” Of course, the rapidly increasing rates of autism could be part of the reason for this staggering statistic. This would mean that in a typical class of twenty-five students, five of them would be classified as having “a seriously debilitating mental disorder.” While that may seem unlikely, I have noted in my more than thirty years of teaching seventh grade in public schools a significant increase in the number of students who do have serious issues.

In describing the stigma associated with mental health disorders, the author asks an excellent question: “Where exactly does this disconnect happen in our minds, allowing us to validate diseases and treatment of the body, but not a disease of the brain?” Those who have mental health conditions typically do not receive the same compassion that those who have chronic health conditions do. In addition, the author mentions uninformed people offering opinions on “overmedicating” children with mental health issues. However, these same people would likely never question giving children with diabetes insulin or treating children who have cancer with chemotherapy. Those whose nervous systems do not function properly need treatment and compassion, just as those who have any other type of illness.

In describing her own daughter and the issues she faces, the author asserts that she has great hope for her daughter and her future. Specifically, she notes that she hopes that her daughter “won’t be seen as ‘less than’ for a condition that was part of her genetic wiring just as much as her blonde hair color was.” While I share this same maternal hope for my son, I don’t completely believe that genetic wiring is solely responsible for why Alex’s brain functions differently. Moreover, I believe that the increase in the number of children with mental disorders is directly linked to toxins in our environment. While these children may be genetically susceptible to illness that affects their brains, assaults to their nervous systems from toxins in the air they breathe, the foods they eat, and the heavy metals injected in them through vaccines ultimately disrupt their chemical balances. These problems likely begin in their guts, which have recently been found to be critical to the immune system, and eventually impact their brains. What appears to be a behavioral issue more than likely stems from a physical condition. Perhaps instead of delineating mental health conditions as separate from physical ailments, modern medicine should recognize that they all have similar sources: disruptions of the typical body functions.

Specifically, we know from extensive testing that Alex suffered from heavy metal toxicity, and we treated him with chelation therapy in which sulfur pills bonded with the toxic metals of arsenic, aluminum, and mercury to remove them from his body. In addition, tests revealed that he has sensitivities to dairy products and glutens, which we have removed from his diet since he was seven years old. Also, he has struggled with yeast overgrowth in his digestive tract that we have treated for many years with a variety of anti-fungal medications and supplements. When he has yeast flares, his behavior reflects this illness, notably through his increased anxiety and OCD. Consequently, what may look like a behavioral problem could actually have a physical, rather than psychological, cause.

My belief in physical causes of mental health issues also comes from personal experience as someone who has dealt with anxiety and panic attacks throughout my life. The most intense phases of anxiety were during adolescence and in my mid-forties, which were times marked by significant hormonal changes. In addition, my thyroid levels must be monitored regularly to make sure that the thyroid medication I take daily (because of hypothyroidism related to the removal of most of my thyroid more than twenty years ago) is the proper dosage. If my thyroid hormone levels are even slightly off, I can easily go into a phase of insomnia, anxiety, and panic attacks. Lowering the level of thyroid hormone even minimally can return me quickly to my typical relatively calm self.

Instead of viewing autism as a mental health issue and focusing too much on possible genetic causes or stereotypical behaviors, more doctors and therapists should recognize autism as a physical condition that can be treated. If, indeed, the child doesn’t feel well, it’s likely that he or she will not behave appropriately. If the person with autism has hormones that are unbalanced, anxiety is likely to erupt. Rather than just attributing all the behaviors to autism, perhaps we need to look deeper and find the true physical cause.

Yesterday, my dad and Ed were setting up a new television for my mom. Early in the process, they were derailed because the screws they needed to attach the television to the base that holds it could not be found anywhere. After looking through all the packaging, they were convinced that the screws were missing and they would need to return the television to the store and get another one or at least the missing pieces. My ability to find lost items and my tenacity in never giving up motivated me to go look for the missing screws myself. In less than a minute I was able to find them in a tiny plastic bag taped to a larger plastic bag, saving a trip to the store and allowing the installation process to continue. What was different about my search from theirs? They kept looking where the instructions told them the needed pieces were and somehow missed what I found. I think autism is like that. Scientists keep looking in the wrong places, and too many people give up too quickly when they can’t find what they’re seeking. Just like those missing pieces I found yesterday, I truly believe that one day the missing pieces to the autism mystery will be solved. In the meantime, I will keep searching for answers and sharing what I’ve learned, hoping to erase any stigma of autism and to create greater understanding for those whose lives have been touched by this condition.

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.” Matthew 7:7