2018: Year in Review

“Five hundred twenty-five thousand six hundred minutes. How do you measure, measure a year?” from “Seasons of Love” by Jonathan Larson

Since this is the last blog entry of 2018, I thought a review of our highlights from this year would be appropriate as a good way to measure Alex’s progress. Tomorrow evening, he will eagerly await the ball drop in Times Square in New York City, and he will count down along with Ryan Seacrest as he watches the televised event. In that spirit, I will also count down from ten.

10. We began the new year with a new case manager to oversee Alex’s disability budget and coordinate his support services. Although we were sorry to see his former case manager go because she was sweet, energetic, and efficient, his new case manager is kind, conscientious, and experienced. One of her main tasks has been collecting information for the new person-centered individualized support plan required by the state of Indiana. By asking numerous questions, she was able to construct a comprehensive multi-page document that accurately reflects Alex’s strengths, interests, and needs. However, I’m betting that after all that work, the only people who will read that document are his case manager and me.

9. Because Alex has poor fine motor skills as well as impaired gross motor planning skills, he has a great deal of trouble putting on his shoes and cannot tie shoe laces. This year’s discovery of Skechers men’s shoes with elastic bungee laces, allowing Alex to simply slip on these comfortable shoes, has made my life easier. Thank you, Skechers!

8. Due to a change in company policy, Alex’s music therapist informed us recently that he would have to do music sessions in his office instead of in our home. While he had many concerns about making this change, I felt reasonably confident that Alex would adapt. Thankfully, Alex proved me right and has done quite well so far in making the transition to the new setting. Of course, the warm welcome the office staff provides Alex each week probably helps, too.

7. Last year, Alex’s behavioral therapist was promoted to supervisor, and her additional responsibilities meant cutting back from two sessions to one each week with her. The second weekly session focused on going out in the community and practicing social skills they had worked on earlier in the week. This year, she decided Alex has made such good progress that she could spend less time working on skills with him and add the community component back into his sessions. Consequently, she now spends half of the session working on skills, and for the other half, we take Alex out in the community again. Alex was pleased with this change, and the sweet ladies who work at Burger King and treat him like a king seemed delighted to see him again.

6. After reading research from Dr. Chris Exley regarding aluminum toxicity links to autism and Alzheimer’s disease, I decided to follow his suggestions about chelating aluminum. Every day, Alex now drinks bottled Fiji water, which contains the mineral silica that bonds with aluminum and removes it from the body. Hopefully, continuing to drink the Fiji water will lessen or even eliminate any aluminum lurking in Alex’s brain, where it can do damage.

5.  One of the most valuable lessons Alex’s behavioral therapist has taught him this year is being assertive but polite. Often, when posed with a choice, Alex seems indecisive and will ask, “What would be good?” She has helped him learn to weigh his options and tell what he wants or needs while using good manners. He has done much better about expressing himself, and sometimes to make sure he’s covered all of his bases, he’ll tell us what he wants immediately followed by all three of the polite indicators: “Please, thank you, and you’re welcome.”

4.  This year, we have been able to reduce more of the medications Alex takes to manage anxiety. Since he has learned ways to deal with anxiety cognitively through behavioral therapy, he relies less on medication. With the guidance of his psychiatric nurse practitioner, we have been able to reduce dosages of nearly all of the medications he takes and are hopeful we can eliminate some of them soon. His behavioral therapist has told us that medication reduction is rare in autism, so we are delighted that this is a sign he is doing remarkably well.

3.  After 2017 found us constantly battling with yeast overgrowth in Alex’s digestive system, his doctor wisely decided to continue weekly doses of the anti-fungal Diflucan for several months this year to wipe out the dreaded thrush. This aggressive treatment did the trick, as we thankfully saw no signs of thrush this year. In fact, this year, Alex has probably been the healthiest he has ever been, with no colds, infections, or any illness.

2.  While we started the year with Alex having some increased sensory issues and anxiety about going places, especially in cold weather or in noisy settings, he thankfully overcame these concerns. In fact, he enjoyed going to several concerts this summer and to many basketball games this fall with no signs of crowds or loud noises bothering him. In addition, he looks forward to going grocery shopping every week at the new local superstore that opened this summer, where he does a better job of pushing the cart and staying out of other people’s way than any other customers do.

1.  Although we have been dealing with Alex’s aversion to food for about a year and a half following an especially bad case of thrush, he seems to be on the right track to regaining his appetite. After a year of his self-limited diet, we took him to a terrific speech therapist who reassured us that nothing was physically wrong. She believed that thrush had made eating painful and food taste bad, so we had to work with Alex on overcoming those negative thoughts. Her warmth and kindness inspired him to try a variety of foods. Still, progress has been slow; however, the past week, we have seen a real breakthrough as Alex has shown signs of returning to his formerly varied and healthy appetite. As we begin a new year, we pray that he continues to make progress so that he can enjoy eating again.

Looking back over all the accomplishments Alex has made in 2018 makes us hopeful for the progress he will continue to make in 2019. Most of all, we are thankful for the blessings God has provided this year and will continue to provide so that Alex will, indeed, reach his full potential.

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness, I will create rivers in the dry wasteland.” Isaiah 43:19

Christmas Present

With just one more door to open on our Advent calendar, we know that Christmas is imminent. Often, December is a difficult month for Alex, even though he eagerly anticipates his birthday and his favorite holiday, Christmas. Like many with autism, sometimes all the hoopla surrounding the holidays can be a bit much for him. To be honest, all the expectations fueled by the media to create a perfect Christmas can make me anxious, too.

The December issue of a magazine sitting on my coffee table (which is cluttered with Alex’s notebooks and pens, his Jeopardy baseball cap, and his tape measure) insists that I still have things to do in the relatively short time between now and Christmas Day: “MAKE IT MAGICAL!” “Amazing holiday gifts (to buy or DIY)” “Host the Perfect Cookie Swap” and “Deck your halls in striking winter whites.” While magical, amazing, perfect, and striking may be good goals for some, I’m just delighted that my decorations look cheerful, the cookies I baked for family and friends are tasty, and I put careful thought into the gifts I’m giving. More importantly, I have remained calm throughout all the preparations, and so has Alex. As Martha Stewart, whose magazine I quoted, would say, “It’s a good thing.”

In contrast to the perfection stressed by December magazines, autism websites offer helpful tips for families in dealing with the sensory overload that often accompanies the holiday season. Talk About Curing Autism provides practical solutions to make the holidays less overwhelming. In “Talk About The Holidays,” they list good suggestions to make holiday photos, food, gifts, noise, and memories easier and better. [To read this article, please click here.] For example, “Be willing to not take it personally if the child shows no interest in the gift given. It may be something that they will come to treasure at a later date.” Having witnessed that first-hand, I know that tip is on target.

Another helpful website, the Indiana Resource Center for Autism at Indiana University, provides social stories for children and adults with autism to teach them coping skills. [To see their website, please click here.] In a social story titled “Christmas Presents,” a good lesson about being a gracious recipient is provided: “It is good to say ‘thank you’ to the person who gave me the present. If I already have the present or do not like the present, I do not say anything. I smile and say ‘thank you.’ Saying that I do not like a present may hurt the person who gave me the present.” Frankly, this lesson about gratitude could benefit many people, not just those with autism.

With Alex, we have learned over the years to encourage him to participate in holiday activities while constantly watching for signs that he is overwhelmed by sensory overload. For many years, he wasn’t particularly interested in the decorations until they were done, but this year, he seemed to enjoy the process, watching me intently as I hung ornaments on the Christmas tree, set up the Christmas village, and decorated the mantel over the fireplace. Although he offers no suggestions for what gifts he would like to receive, he is completely content to trust my judgment about what I think he will like. Moreover, he seems to have learned the lesson in the social story, smiling and saying “thank you,” never telling me that he doesn’t like a gift, except for the year I gave him socks as a joke and he told me that wasn’t a good gift.

Even though Alex has been remarkably calm and content the past few weeks, we know there’s always the possibility that he can become anxious. Moreover, we know the importance of being flexible, despite the attempts to make Christmas as magical, amazing, and perfect as possible. Last year, we had nearly made it to my brother’s house for our family Christmas get-together when our car skidded slightly on ice. Although this was a momentary loss of control, it was enough to make Alex lose control, and he insisted we had to go home immediately. Despite reassurances, he needed to go home where he felt safe, and we had to honor his requests. While not being able to be with family was disappointing, we had to put his needs first, as we always do. For many years, we didn’t even try to go to family holiday gatherings because Alex couldn’t handle them. At least now we can try, but we prepare ourselves for the possibility that we may have to cancel plans at the last minute. This is the reality of life with autism, which is not always magical, amazing, or perfect.

However, for Alex, Christmas preparations don’t revolve around decorations or food. He will tell you that Christmas is Jesus’ birthday, and he likes to celebrate by listening to Christmas music. In addition to the two Christmas concerts he has enjoyed this holiday season, Alex has been singing Christmas songs with his music therapist and listening to holiday songs on his CD player. Remembering favorite songs from years past, he has sent me searching the house for specific CD’s he wants to hear. The other day, he had me looking for “Glory to God in the Highest” and rewarded my efforts by smiling and swaying to the upbeat contemporary gospel tune. Last night, he requested a Christmas song by gospel songwriters Bill and Gloria Gaither, “Look Who Just Checked In.” After my unsuccessful hunt for the CD with that song, he was able to find a video performance of the song on YouTube. Always curious as to what makes a song special for Alex, I listened to the lyrics along with him:

“Look who just checked in, into the barn, into the world, into the hearts of the boys and girls. Never been a baby quite like Him. Look who just checked in.

He’s the Prince of Peace, the King of Kings, the Lord of the Universe and every little thing. Emmanuel says time again, God is with us once again, once again.”

Despite all the obstacles autism presents in social skills and communication skills and sensory issues, Alex understands the true meaning of Christmas: the birth of our Savior. It’s not decorations or food or presents; it’s the reminder that God sent his Son to Earth to check in to the world and into our hearts. As if that were not gift enough, He gave me my son to remind me what makes Christmas truly magical, amazing, and perfect. “Glory to God in the highest!”

“But the angel said to them, ‘Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; He is the Messiah, the Lord.” Luke 2:10-11

Three Cubed

“December 16, 1991.” Over the past twenty-seven years, I have mindlessly rattled off that date countless times in doctor’s offices and pharmacies as well as over the phone to insurance companies and special services providers. In true Jeopardy format, I could tell the significance of this date in the form of a question: “What is Alex’s birthdate?” However, the judges would also have to accept the following as correct: “What is the date I became a mom?” or “When was the most fascinating person I’ve ever met born?” or “What is the day my life forever changed for the better?” Certainly, becoming Alex’s mom has allowed me to experience life in ways I could have never expected, and for that, I will be forever grateful to God and to Alex.

If it were not for Alex, I would not appreciate the wonder of numbers. As someone who has always loved words, mathematics held no particular interest for me. However, for Alex, numbers allow him to make sense of the world: how big, how far, how tall, how expensive, how hot, how many, how long. He treasures measuring devices that give him the answers and perspectives he seeks, such as clocks, calendars, and rulers. He notices and happily announces patterns that others might miss, including when the temperature is the same as the number of minutes on the clock, when the gas prices are the same as pi, and that our phone number is a prime number. Indeed, even Alex’s new age––twenty-seven––becomes more interesting because it is a perfect cube (3 times 3 times 3). Because Alex has shared his love of numbers with me, I have realized that despite the infinite possibilities and seeming randomness of life, patterns and plans are waiting to be discovered. We only need to keep looking for them with enthusiasm, as Alex does every hour of every day.

If it were not for Alex, I wouldn’t have realized the depths of goodness in the man I married. Having the opportunity to witness the caring and patience and unconditional love Ed has developed since becoming Alex’s dad has been a gift. Since Alex usually sits between the two of us when we take him to concerts and sporting events, I often see Alex lean toward his dad in these situations to ask him a question or make a comment. With their two heads literally and figuratively together, they share a bond most father and sons would envy. The other evening, I heard Bob Dylan Christmas music coming from the basement and walked downstairs to find the two of them having a grand time, enjoying the music they love and I don’t. While being an autism dad has been challenging, Ed has stepped up and been the father Alex needed. In return, he has been rewarded with Alex’s devotion to him.

If it were not for Alex, I wouldn’t know how precious the last few minutes before falling asleep are. After we say bedtime prayers together, in which Alex asks God to bless practically everyone he’s ever met, not to delay going to sleep, but because these people have made an impression upon him, we engage in a nightly routine that is familiar and comforting. We discuss his schedule for the next day and say, “Love you” to each other. Because Alex has sensory issues that make physical affection difficult for him, the verbalizing of our love takes on greater value. Nonetheless, over time, he has become more tolerant of touch, smiling as he lifts his head off his pillow for me to kiss his forehead or cheek. I really don’t think Alex needs a bedtime kiss from me to know he’s loved, but I think he offers his sweet face to me because he knows how much it means to me.

If it were not for Alex, my faith in God would not be as strong. Not only has autism tested and developed my faith, but also being able to witness Alex’s complete trust and faith in God has provided a model of how I need to believe. When Alex was struggling mightily with anxiety, I would kneel beside his bed as he slept, praying earnestly for God to help him and comfort him in ways that I could not. When Alex is doing well and content with life, as he has been lately, I offer prayers throughout the day, thanking God for how far He has brought Alex. Despite wanting to control every aspect of Alex’s life, I have learned that God’s ways are far better than mine, and I have learned to trust and wait upon God instead of leaning on my own understanding.

Although I don’t know what the future holds for Alex and honestly worry about how autism may make his life more difficult than necessary, I do know that God has plans for him He hasn’t shared with me, probably knowing I would want to tweak them myself. Nonetheless, He has entrusted this precious child to me, and I have tried to teach him the important lessons in life. Twenty-seven years later, I burst with pride at the fine young man Alex has become and thank God for the best student and teacher I’ve ever had, as well as the most precious gift God has ever given me.

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

Waiting

Armed with a Sudoku puzzle and a crossword puzzle to keep myself occupied and slightly distracted, I sat in the waiting room last Thursday afternoon while Alex was engaged in music therapy. This change of setting was different for both of us, as usually Alex’s music therapist comes to our home, and I sit in a nearby room where I can eavesdrop on their session. With the therapy room at the back of the building from where I was sitting in the front of the office, I didn’t know how things were going, but I hoped for the best, praying all would go smoothly.

A few weeks ago, Alex’s music therapist apologetically told us that his company wanted clients to start having sessions in their office instead of at home. Because Alex has been doing remarkably well lately, his music therapist didn’t want to make any changes that might cause setbacks in his progress. Knowing that he was just following company policy, I reassured him that Alex would adjust to the changes and be fine. Moreover, I suggested that maybe the change in setting would be good for Alex.

Wanting to make the transition as easy as possible, the music therapist and I discussed with Alex that only the place would change; everything else would remain the same. His sessions would meet the same day at the same time, would last the same amount of time, and would follow the same procedures. I told Alex that we would take along the clipboard and notepad they use every week for his therapist to write down the songs they sing as well as a deck of cards so that they can play the game War as a reward for a good session. Also, with his therapist’s approval, I assured Alex that I would bring orange juice in a sport bottle for him to drink during the session there, just as he does at home. I suspect that he thought his therapist and I were overdoing the pep talk, as he seemed quite calm and unfazed by the change of venue. Nonetheless, his therapist told me that if sessions didn’t go well at the office, he would talk to his supervisor about keeping Alex’s sessions at home.

Sitting in the waiting room alone, I thought about how much of life revolves around waiting and wondering. Especially with special needs children, parents spend a great deal of time in waiting rooms of doctors and therapists, wondering what the professionals will tell them about their children’s conditions. In addition, parents of special needs children often wait a long time for their children to master skills, to achieve milestones, and to overcome obstacles. In short, we spend countless hours waiting for our children to get better.

When I find myself waiting impatiently, I need to look no further than Alex’s example because he has become amazingly calm about waiting. In the past week or so, he has sat patiently waiting for two Christmas concerts to begin and for two basketball games to start. Because we usually arrive early to get seats that are best for Alex, we often wind up sitting a while before the activity actually starts. Nonetheless, he doesn’t seem to mind waiting; he’s just happy to be where he wants to be.

At the end of Alex’s music therapy session, both he and his therapist returned to the waiting room smiling, his therapist giving me a “thumbs up” signal. Furthermore, his therapist told me Alex did “fantastic,” despite any concerns we had about how he would adapt. His therapist started laughing as he told me that Alex had wanted to know where the bathroom was in the building. When he showed Alex the location, opened the door, and asked if he needed to use the restroom, Alex bluntly told him, “No, it’s too stinky in there!” To Alex, overpowering air freshener would be as offensive as any bathroom smells might be, so I’m not sure what he found to be so off-putting. Nevertheless, he won’t likely be asking to use the bathroom during session.

With one good session behind him, we pray for future success as Alex continues having music therapy at the office instead of at home. However, I do have to admit that I’ll miss eavesdropping on their conversations and listening to them sing together. Nonetheless, his therapist and I are relieved and delighted and thankful that Alex handled the new situation so well and are hopeful that he will continue to make good progress there.

“Wait patiently for the Lord. Be brave and courageous. Yes; wait patiently for the Lord.” Psalm 27:14

One in Forty

An article published in the December 2018 issue of the journal Pediatrics indicates that the current rate of autism in the United States is 1 in 40 children. “The Prevalence of Parent-Reported Autism Spectrum Disorder Among U.S. Children” details research led by Michael D. Kogan, Ph.D. and his colleagues at the Office of Epidemiology and Research at the Health Resources and Services Administration’s Maternal and Child Health Bureau. [To read this article, please click here.] Their study analyzed parent survey data from the 2016 National Survey of Children’s Health and included 43,283 children 3-17 years old.

For this survey, parents were asked if a doctor and/or another health care provider had ever told them that their child had autism. The parents were also asked if their children currently had autism. Of the parents surveyed, 2.5% responded that their children had received an autism diagnosis from a medical professional and still had autism. This translates into approximately 1.5 million children in the United States with autism. In addition, the data showed that boys are 3.5 times more likely than girls to have autism.

In comparing this survey to other similar surveys regarding autism prevalence, the researchers noted that the National Health Interview Survey yielded similar statistics. The results of the Autism and Developmental Disabilities Monitoring Network (ADDM), which were reported in April of this year, showed a lower rate of autism: 1.7% of children with autism, or 1 in 59 children. Dr. Kogan’s team notes that the ADDM survey focused only on eight-year-old children in eleven communities in 2014, whereas their research covers a wider range of ages across the country in a more recent survey.

In addition to citing the increase in the rate of autism in the United States, the researchers emphasize that children with autism have greater health needs than typical children. Specifically, 83% of children with autism have at least one health condition, such as asthma, eczema, gastrointestinal issues, or seizures, accompanying autism. Furthermore, they found that children with autism are more likely than other children with behavioral, developmental, or emotional disorders to have seen a specialist and to have received mental health counseling, early intervention, and special education services.

However, finding proper care for children with autism proves difficult, the researchers discovered. The survey indicated that parents were 44% more likely to have difficulty getting mental health treatment for their children with autism. Moreover, children with autism are 46% less likely to receive needed mental health care. The researchers also found that 64% of the children with autism had received behavioral therapy in the past twelve months. In addition, 27% of the children with autism took medications for symptoms such as anxiety, irritability, and hyperactivity.

Aside from a lack of mental health care availability, the researchers also noted problems finding a “medical home” for each child with autism. They defined medical home as having five criteria, all of which must be met for the patient: a personal doctor or nurse, a usual place for sick care, no problems getting referrals, family-centered care, and effective care coordination. Their survey indicated that children with autism were 23% less likely to have a medical home, and 24% were less likely to have their care coordinated. Clearly, having professionals work together to improve the child’s physical and mental health is crucial in autism, but more coordination of services must be done.

As the researchers state, autism rates have been increasing over the past thirty to forty years. Other studies have demonstrated the significant rise in the number of children diagnosed with autism. Specifically, the rate of autism in the United States has gone from 1 in 5000 in 1975 to 1 in 2500 in 1985 to 1 in 500 in 1995 to 1 in 250 in 2001 to 1 in 166 in 2004 to 1 in 110 in 2009 to 1 in 88 in 2012. This new research now makes another leap to 1 in 40 in 2016. The researchers speculate that the increase is due to better and earlier diagnosis, broader diagnostic criteria for autism, greater parental awareness, and some increased risk factors, such as older parents.

The sudden increase in numbers of children with autism poses a financial hardship as well as difficulties noted in finding proper physical and mental health care. The researchers indicated that the cost of providing proper health care and non-health care for a child with autism is $17,081 greater per year than for a typical child. Moreover, the researchers cited data from 2011 indicating that the total societal cost of caring for children with autism in the United States was estimated to be $11.5 billion per year. Considering the number of children in the U.S. has doubled or tripled since then, the cost of caring for them would also significantly rise.

The researchers conclude their article as follows: “Because ASD [autism spectrum disorder] is a lifelong condition for most children, an important area of future research would be to study life course development and understand what factors influence health and well-being in young adulthood and beyond for these children.” Well, the good news is that they will probably have a lot of people with autism available to study, especially if the rates keep increasing dramatically. The bad news is that they will get no closer to finding the cause of autism if they continue to stick with the better diagnosis/greater awareness/increased diagnostic criteria reasoning. At what point will the medical profession declare we have a health care crisis as more and more children are diagnosed with autism, a lifelong condition?

Instead of just counting the number of children with autism and admitting they need better access to care, researchers need to figure out the true causes of autism. For example, what roles do environmental toxins, such as heavy metals, play in autism? Furthermore, instead of denying that vaccines cause autism, perhaps an unbiased reexamination of their effects upon children should be taken. One only need to see that the dramatic increase in autism follows the dramatic increase in the number of vaccines recommended by the CDC for children between birth and five years of age. In 1962, only three shots were recommended, but in 1983, ten shots were advised. The 2018 CDC Recommended Immunization Schedule now includes 38 shots.

The researchers who proclaim the new rate of autism is 1 in 40 American children never address the possibility that environmental toxins or the increased rate of vaccines may be related to autism. Until doctors and researchers are willing to consider all possible causes of autism and seek ways to make our children with autism healthier, we can anticipate that the autism rates will likely go higher. We can only hope and pray that our merciful God will save us and our children from this calamity, for He can heal what humans cannot.

“From six calamities He will rescue you; in seven no harm will touch you.” Job 5:19