Waiting for a Change

“At the time I have decided, my words will come true. You can trust what I say about the future. It may take a long time, but keep on waiting––it will happen!” Habakkuk 2:3

About a week and a half ago, we noticed Alex wasn’t acting like himself. Instead of being good-natured, he was irritable. Instead of being logical, he was irrational, jumping to ridiculous conclusions. In addition, his OCD, which is usually controlled well by medication, was heightened as he kept repeating the same questions and phrases. From years of experience, Ed and I recognized these telltale behaviors as a likely sign that Alex once again had yeast overgrowth in his digestive system, which affects his behavior negatively.

Fortunately, his doctor understands the impact yeast has on Alex’s behavior and trusts our diagnostic skills in this area. After I sent his doctor a brief email describing our suspicions and requesting a refill of antifungal medication, he responded quickly and assured me that he had sent a prescription to the pharmacy. When I went to pick up the antifungal, I was pleased and surprised to discover that his doctor had authorized enough refills to last a year. Clearly, he recognizes the negative effect yeast overgrowth has on Alex, and he trusts our judgment in giving medication as needed to help Alex heal.

As we have found from experience, the antifungal medication makes a difference quickly. Within an hour, we see Alex become more docile and less edgy. Within two hours, he’s content and calm, and the OCD behaviors seem to disappear. Because he responds so favorably to the antifungal, our suspicions regarding what made him irritable are confirmed. Since we have dealt with these infections repeatedly for years, we know what to expect and are always grateful that the medicine works fairly rapidly to make Alex feel better. Waiting is easier because we don’t have to wait long to see changes, and we are confident he will get better.

A few days ago, Ed came home from work grimacing and holding his left hand on his lower back. Some Google searching had allowed him to diagnose himself with his first kidney stone. Despite my suggestion to go to the emergency room that evening, he decided to try to treat the ailment himself by drinking water and taking over-the-counter pain relief medicine. The next morning, when the pain was getting worse instead of better, I made an appointment for him to see his doctor, who confirmed that he did, indeed, have a kidney stone. Even though his doctor prescribed various medications to help the nausea and pain as well as to help the stone pass, Ed was suffering from what he described as the worst pain he’d ever experienced in his life.

At that point, we knew he needed to go to the emergency room, but with Alex, plans always need to be made carefully so that he doesn’t get upset and overreact. A quick phone call to my parents, who thankfully live only ten minutes away, solved the problem. My dad, who has dealt with kidney stones over the years and could empathize with Ed’s pain, would take him to the ER while my mom and I stayed home with Alex to keep him calm. As we waited, we prayed that Ed wouldn’t have to wait long for his pain to ease.

About an hour later, my dad called to tell me that everything was going well and that all of the medical staff had been kind and helpful. In fact, the doctor taking care of Ed had suffered from kidney stones, too, so he could relate to how painful they are. When the nurse gave Ed intravenous pain medicine, she assured him that he would feel much better within twenty minutes. While that intensely painful waiting time must have seemed much longer, the nurse’s prediction was accurate: Ed’s pain level dropped from the highest rating of 10 down to 1 in twenty minutes. Moreover, as the doctor had predicted, Ed was relieved to be able to pass the stone last night fairly painlessly without any further medical intervention. Just as with Alex, the right medical treatment makes all the difference in the world, and experiencing positive changes makes waiting for complete healing bearable.

While I hate that Alex and Ed had to suffer needlessly, both of these experiences show how things can change suddenly for the better. So much of life is spent waiting and wondering when things will change. Many times I have sat in waiting rooms, wondering how much longer before my turn would arrive or even if they had forgotten about me. The longer I waited, the more I became frustrated and began questioning if I should just give up and leave. Nonetheless, the waiting eventually ended, and my turn always arrived, despite my lack of patience.

Similarly, the longer we deal with Alex’s issues related to autism, I can become discouraged waiting and wondering if things will ever change. However, experience has taught us through the years that things do get better in time. We wondered if he would ever sleep through the night, and in time he did. We began to lose hope that he would ever learn to use the toilet independently, but after years he finally did. We questioned if he would ever be able to carry on a conversation with us, and now some of our sweetest moments are spent chatting with our fascinating and entertaining son. Somehow the longer time passes, we think these changes for the better are less likely to happen, but we continue to wait for the appointed time God has designated for these milestones.

Thankfully, I was raised by loving parents whom I can always trust for help, support, and comfort, so I know that I can also trust my heavenly Father to take care of my family. When my parents told me the other evening that they were on their way to help us, I had no doubt that everything would be all right. Knowing that help is coming makes the waiting easier to take. Similarly, I can trust that God’s help is on the way, so I don’t need to despair. If we didn’t have to wait in life, there would be no real need for faith. Moreover, the longer I live, the more of God’s goodness I see, fulfilling His plans, while making the waiting less wearisome and more worthwhile, as I know that healing will eventually come in His perfect timing.

“I wait for the Lord, my soul waits, and in His word, I put my hope.” Psalm 130:5

Virtual Reality as Therapy for Autism

Researchers estimate approximately one fourth of children who have autism struggle with phobias that can negatively impact their daily lives. Thanks to modern technology, researchers have discovered a promising new method of treating these extreme fears. Using virtual reality therapy, researchers at Newcastle University in England in conjunction with Third Eye NeuroTech have created interactive computer-generated scenarios to help children with autism deal with their fears.

Last week, Science Daily published an online article regarding this research that was also published on February 14, 2019, in the Journal of Autism and Developmental Disorders and Autism in Adulthood. [To read “Immersive virtual reality therapy shows lasting effect in treatment of phobias in children with autism,” please click here.]

For this therapy, known as the Blue Room treatment, children and adults with autism were exposed to a 360-degree virtual environment related to their specific fears. In real life, the people with autism would have difficulty coping with these frightening scenes. As researcher Dr. Morag Maskey notes, people with autism may have trouble imagining scenes, but the virtual reality allows them to visualize these scenarios while they are provided support to deal with their fears. Accompanied by a psychologist, the children used an iPad to navigate and control completely the situations they were shown. In addition, they did not have to wear goggles, unlike some forms of virtual reality.

Some of the phobias addressed in this treatment included fears of the dark, walking into rooms, school, public transportation, elevators, dolls, balloons, dogs, and wasps and bees. For the first study, 32 children with autism who were between 8 and 14 years old were divided equally into two groups. The first group began treatment in the Blue Room immediately, whereas the second group, acting as the control group, waited six months to begin the Blue Room treatment. The children spent four sessions per week in the Blue Room with a psychologist observing personalized scenarios related to their individual phobias. Their parents could also observe these sessions through a video link. After these treatments, the parents provided opportunities for their children to face their fears in the real world.

Two weeks after the virtual reality treatment, 25% of the children in the first group were able to cope with their specific phobias. Six months later, the positive effects of the therapy remained, as 38% showed improvement, and only one child displayed an increase in the intensity of the phobia. In the second group, 40% showed improvement two weeks after completing the treatment, and 45% retained the benefits of the therapy six months later.

In a similar but smaller study, eight adults with autism ranging in age from 18 to 57 participated in four twenty-minute sessions in the Blue Room interacting with scenarios personalized for their specific phobias. Six months later, five of the adults retained the benefits of this therapy.

While the research team plans further studies to see how long lasting the effects of this therapy are and to discover why some children and adults do not respond to this treatment, the positive results are encouraging. As Dr. Maskey states, “It is incredibly rewarding to see the effect it [the Blue Room treatment method] can have for some, overcoming a situation which just a week previously would have been so distressing.”

Moreover, the leader of the study, Professor Jeremy Parr from the Institute of Neuroscience at Newcastle University, emphasizes how life changing the effects of this therapy could be. He states, “For many children and their families, anxiety can rule their lives as they try to avoid the situations which can trigger their child’s fears or phobia.” Furthermore, he adds that this treatment “offers hope to families who have very few treatment options for anxiety available to them.”

Since extreme fears can produce debilitating anxiety in people with autism, potentially triggering aggressive panic attacks or causing them to avoid situations they fear, addressing phobias in a supportive way could have lifelong benefits. Fortunately, the researchers at Newcastle University and the technology experts from Third Eye NeuroTech have discovered that virtual reality may help children and adults with autism successfully overcome phobias so that they may face everyday reality fearlessly.

“I prayed to the Lord, and He answered me. He freed me from all my fears.” Psalm 34:4

Book Review: Common Man, Extraordinary Call

After a child is diagnosed with special needs, many parents seek advice from others in similar circumstances who can share the wisdom of their experiences. In Common Man, Extraordinary Call, released last week and available from Amazon and Barnes and Noble, special needs dad Jeff Davidson offers an honest and clearly written guide for fathers of special needs children. As the father of an adult son, Jon Alex, who was diagnosed with cerebral palsy, intellectual disability, and nonverbal autism, he and his wife, Becky, generously share what they have learned. [Special thanks to Becky Davidson and Kregel Publications for providing me an advance complimentary digital copy of this book.]

Although he never served in the military, the author explains that he greatly respects those who have served our country. Consequently, he uses military terminology throughout this guide for fathers who have unwittingly been drafted into the troops of special needs dads. In each chapter, he offers practical ways to deal with issues through a section titled “Mission Critical,” in which he provides checklists detailing what needs to be done.

As he provides leadership to the dads on the front lines, Jeff Davidson explains the tactics in a casual, conversational tone that is reassuring. Sharing candidly what he has learned along the way, he reveals a keen sense of audience, engaging the reader through direct address: “You” and “Dad.” Moreover, each chapter ends with "A Story from the Front Line,” in which special needs dads share their own stories, or an “Encouragement from the Homefront,” a letter from Jeff’s wife, Becky, offering support to special needs dads. In addition, the book also provides a helpful study guide at the end, reviewing important points in the book, as well as thought-provoking discussion questions for further reflection.

One of the issues the author tackles in the first chapter is the problem of denial. In fact, he admits that he refused to say that his son had autism until three years after his son’s diagnosis. However, he notes: “When I finally accepted the truth, our world shifted, and life became easier.” Having struggled with denial himself, he strongly urges special needs fathers to ask God for help in accepting their circumstances.

In addition to asking God for help, the author also advises asking others for assistance when needed. Enumerating all the various roles fathers must play in providing for their families’ physical, emotional, spiritual, and financial needs, he understands that special needs dads may feel overwhelmed. While fathers may be reluctant to impose on others for help, he explains, “If we forgo their help, we are robbing them of the opportunity to be a blessing.”

Moreover, the author encourages special needs parents not to isolate themselves from others. While raising a child with special needs fills life with challenges, he urges, “We have to be willing to let people into our lives. They need to know what your reality is like.” Although allowing others to see what life with a special needs child is really like may be uncomfortable, he assures the benefits are worth the efforts. Ultimately, others can gain understanding as well as love and respect for people with special needs by interacting with families who are raising special needs children.

Perhaps one of the most powerful chapters of the book, Chapter 8, “Emotional Land Mines,” candidly describes the difficulties special needs parents must consciously avoid. Specifically, he warns against envying other people’s lives and advises special needs parents to stop comparing their lives to those of others. Additionally, he describes the dangers of fear, self-pity that can lead to despair, futile attempts to assign blame for the child’s disability, and the sense of being cheated. Instead, he suggests, “…the power over every circumstance depends upon my choice of perspective.” Similarly, he addresses the bitterness and grief associated with missed milestones, beautifully noting the importance of a positive perspective: “Joy can be found in the simple successes, and contentment in the seemingly insignificant moments.” Furthermore, in dealing with the death of dreams that parents of special needs children face, he admonishes abandoning our expectations because “God has plans and dreams for our children, too.”

Yet another key point Jeff Davidson raises is the importance of teaching our special needs children how to overcome fear. He stresses that parents must reassure their children that they can confidently trust God as a source of wisdom, protection, and provision. As an additional reassurance to parents, he reminds us, “God will always be there for your children, even if you can’t be.”

Sadly, Jeff Davidson passed away unexpectedly and went to be with the Lord in May 2017. In the preface of Common Man, Extraordinary Call, his wife, Becky, explains Jeff’s desire to help special needs families, especially fathers of children with special needs. Moreover, she notes that writing and publishing this book fulfills his dream “to speak directly to the men he knew were so in need of hope.” Indeed, Jeff Davidson’s words of faith and love will continue to inspire others while sharing the hope he had found in the Lord.

“The master said, ‘Well done, my good and faithful servant. You have been faithful in handling this small amount, so now I will give you many more responsibilities. Let’s celebrate together.’” Matthew 25:23

New Speech Therapy Method Offers Hope for Autism

For many children with autism, speech therapy provides crucial training to help them develop language skills. A recently published research article describes a new form of speech therapy that offers promising results to children with autism whose speech skills are limited. The article, “Behavioral predictors of improved speech output in minimally verbal children with autism,” published in the October 2018 issue of Autism Research and available online through the Wiley Online Library, describes the AMMT method and suggests which children are most likely to benefit from this form of speech therapy. [To read this article, please click here.]

The researchers, affiliated with Boston University, Harvard Medical School, and Beth Israel Deaconess Medical Center, all located in Boston, Massachusetts, looked for factors that would predict improvement in spoken language for minimally verbal children with autism. Their study included 38 minimally verbal children with autism ranging from ages three years and five months to ten years and eight months.

The children received one of two forms of speech therapy and participated in a minimum of twenty-five sessions that met five days a week for forty-five minutes each time. Most of the children engaged in auditory-motor mapping training (AMMT), “a novel therapy that uses intonation (singing) and rhythmic hand tapping.” The researchers further describe AMMT as “one of a small number of music-based treatments that have recently begun to be used effectively for teaching language and social skills to children with ASD” [autism spectrum disorders]. The other children in the study—the control group— engaged in speech repetition therapy (SRT), which involves no singing or tapping, only saying words aloud.

During these sessions of speech therapy, the children were given thirty familiar two syllable words to say aloud, such as “mommy,” “cookie,” and “bye-bye.” The children in the SRT group simply repeated these words with the speech therapist. However, the children in the AMMT group would sing the words while using two hands to tap on drums at the same time. This method not only combines using auditory and motor skills but also holds the attention of the children during the therapy sessions. The researchers discovered that the children who participated in the AMMT therapy improved their speech production more than those who received SRT therapy.

In addition, the researchers studied which factors were most closely linked to speech improvement, such as age, gender, severity of autism, nonverbal IQ, expressive language skills, and phonetic inventory (the number of speech sounds children can repeat correctly). In some children, the severity of autism influenced the amount of progress made in therapy. However, phonetic inventory was the strongest predictor of how much the children would improve. Researchers were surprised to discover that nonverbal IQ, expressive language, and age did not predict the level of improvement.

In fact, they noted that the older children may have better attention spans during therapy sessions that enabled them to make progress. While the value of speech therapy for older minimally verbal children with autism is sometimes questioned, the researchers note that their observations suggest some older children with autism can benefit from speech therapy.

Although the researchers admit that working with minimally verbal children can be difficult, they also stress the value of effective treatment. Approximately 25% of children with autism are considered minimally verbal. Developing language skills tends to reduce behavioral issues and improve long-term outcomes for these children. As the researchers stress, there is a “great need for these children to acquire even a few words.”

While the researchers affirm the need for further study in the area of speech therapy for minimally verbal children with autism, their study offers hope. First, the AMMT method appears to develop speech skills successfully by combining speech with singing and tapping. Moreover, their results indicate that even older children can develop their speech skills through proper therapy. Certainly, helping children with autism learn to speak is a noble cause, allowing them to communicate their wants and needs, to express their thoughts and feelings, and to interact with others so that they can lead fulfilling lives.

“He has given me a new song to sing, a hymn of praise to our God. Many will see what He has done and be amazed. They will put their trust in the Lord.” Psalm 40:3

Book Review: Aching Joy

What do we do when life doesn’t turn out the way we expected, planned, or hoped? As Christians, how do we follow the Apostle Paul’s advice to “rejoice in hope, be patient in tribulation, and be constant in prayer” when our prayers seem to go unanswered? Writer, pastor, and autism dad Jason Hague skillfully addresses these questions in his recently released book, Aching Joy. [The author and Tyndall House Publishers, Inc. provided me with an advance reader copy; the book is now available through Amazon and Barnes and Noble.]

After his son Jack was diagnosed with severe autism, Jason Hague thought he had two options: to live with constant sorrow or to lower his expectations of what the future may hold. With neither choice offering a satisfying life, he instead embraces the path of “aching joy,” where “treasures hidden in the darkness” can be found.

For those who are in despair and frustrated with God, the author offers reassurance: it’s okay to be angry with God. Citing Biblical examples of men of faith who felt abandoned by God—David, Job, Jeremiah, and even Jesus—the author advocates being honest with God about our feelings. In fact, he notes, “Honesty with God is the beginning of healing.” Later, he goes on to explain that as children of God, we are allowed to admit hurt, feel fear, confront God, cry, and accept a situation that is less than ideal. However, he also cautions, “But as a child of God and a follower of Jesus, you are forbidden one thing: You are not allowed to give up hope.”

In a conscious effort to seek joy, Jason Hague began focusing upon developing his relationship with his son Jack and trying to understand his behaviors, such as flapping his arms. He tells a humorous anecdote regarding Jack’s “living-room shrine to Bush’s Baked Beans,” a pyramid of various types of cans Jack had carefully constructed and selected as a reward at the grocery store. What made this unusual interest more curious, the author explains, “He never opened any of those cans. He doesn’t even like beans.” Even though his family did not know why Jack thought these cans were so fascinating, they found his interest amusing and tried to figure out their appeal.

Since progress in autism is often slow, waiting for major breakthroughs can prove frustrating and tiring. Instead, the author suggests taking a break from waiting for a miracle and seeking “smaller graces day by day.” He explains, “God works in big ways and small ways. We must learn to see and receive his subtler miracles—his daily blessings—because that is where he does most of his best work.” Moreover, the author notes that seeking these smaller graces offers rewards: “When we actively look for his [God’s] hand in our circumstances, a funny thing happens. We start to see it.”

Along with trying to understand his son’s behaviors, help him learn to communicate, and develop a relationship with him, Jason Hague candidly describes one of the most difficult aspects of parenting a child with autism—dealing with meltdowns. Explaining how something seemingly small would upset his son profoundly, even to the point of Jack punching himself and banging his head against a wall, Jason Hague earnestly shares how helpless he felt during this “sheer, panicked agony.” He notes, “If we knew what was causing the meltdowns, we could have dealt with them. But he couldn’t tell us.”

Not knowing what specifically triggered the meltdowns, Jack’s parents desperately tried to comfort their son, holding his arms for safety while reassuring him of their love and reminding him that he was not alone. From that experience, the author draws the parallel of God as the father who promises in Scriptures to be with us always to give comfort and strength. As Jason Hague wisely notes, “‘I am with you’ means we never have to walk alone. That is reason enough for joy.”

Another aspect of life with autism that can cause grief, the author explains, is the tendency to compare our lives with others. Seeing typical family photos on social media or hearing about other children’s accomplishments can cause us to feel resentment and envy. Instead, the author urges us to celebrate others’ achievements while waiting for our prayers to be answered because they are evidence of “the goodness of God in the land of the living.” Moreover, he emphasizes the value of testimonies: “The stories of hope, big or small, from our neighbors or from our own histories, are evidence of the hand of God. Without them, we might despair.”

Nonetheless, human nature tends to look for fairness in life, and we may lament that it’s not fair for our children to suffer from autism. However, Jason Hague points out that we also need to look for the gifts our children have been given, recognizing that they may have been compensated in special ways. Specifically, he describes his son’s kindness, patience, and willingness to forgive others. Additionally, the author notes, “Despite the paralyzing effects of his condition, he finds more delight in the simple things of this world than anyone I have ever met.” Indeed, Jack’s ability to find joy in small things offers a testimony that out of suffering can come unabashed delight others can share.

In Aching Joy, Jason Hague openly shares his thoughts and feelings about the frustrations and joys in raising a child with autism. After struggling with uncertainty, he offers the wisdom he has gained from his experiences so that others may know that they, too, are not alone as they wait on the Lord. Moreover, this heartfelt memoir and testimony of faith reminds readers to seek God’s comfort: “Courage and healing are in his hands, and he waits for you to call.”

“The Lord is my strength and shield. I trust Him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving.” Psalm 28:7

Jeers and Cheers 2017

 

Every week, TV Guide Magazine offers a feature entitled “Cheers and Jeers” with brief descriptions of what the writers thought were the best and worst in television for that week. At the end of the year, they do a “Cheers and Jeers” summary for the entire year, a best (“Love it!”) and worst (“Hate it!”) list for the year in review. Like many people do on the last day of the year, I’ve been reflecting on 2017 and coming up with my own “Cheers and Jeers” list for the year. However, since I like to end on a positive note, I’ll flip the order and call this “Jeers and Cheers” for 2017.

Jeers to candida, the bane of our existence! Alex has struggled with candida overgrowth in his digestive tract for years, primarily in the form of thrush that irritates his mouth and throat. Moreover, it just makes him plain irritable and irritating. This year he had a doozy of a case of thrush that lasted for months and required multiple doses of the prescription anti-fungal fluconazole.

Cheers to Alex’s primary care doctor! Not only does he recognize how negatively candida overgrowth affects Alex’s health and behavior, but he also worked closely with us for months, trying to eradicate this annoying condition by prescribing appropriate doses of medication. At Alex’s annual physical last week, his doctor told us that he couldn’t see any signs of thrush, so hopefully, we have this under control going into the new year.

Jeers to the mainstream media who chose to downplay or ignore the new autism statistics released by the U.S. Centers for Disease Control that show 1 in 36 kids have autism and 1 in 28 boys have autism! Perhaps following the “Me, too” movement of victims of sexual harassment, parents of children with autism need to start a social media blitz indicating “Mine, too,” to share the widespread impact of autism upon our children.

Cheers to ABC for adding to their fall line-up, The Good Doctor, a wonderful show featuring a main character with autism! Not only does actor Freddie Highmore do a fantastic job of portraying a young man with autism, but also he makes Dr. Shaun Murphy loveable in spite of his impaired social skills.

Jeers to whatever suddenly made Alex a picky eater this year! Although many children and adults with autism are picky eaters, Alex has always had an excellent appetite and was willing to eat nearly any foods we gave him. Currently, he has limited his diet to fruit, Jello, Rice Dream, coconut milk smoothies, and scrambled eggs with spinach herb seasoning. This change in his eating habits has made me quite empathetic to those parents whose children refuse to eat most foods.

Cheers to whatever suddenly made Alex decide that he wanted to eat pepperoni last week! He asked me a few days ago if we had any pepperoni, and when I bought some for him at the store I had doubts that he would eat it. However, this is his new favorite food, and we’re happy that he is moving away from the vegetarian (fruitarian?) diet he’s adopted for the past eight months. Fingers crossed he’ll come up with some new ideas of foods he’d like to eat in 2018.

Jeers to losing two terrific members of Alex’s support team! His case manager and the representative from the agency that provides respite care both took other jobs, and we are sorry to see them go. Their enthusiasm, expertise, and efficiency made them outstanding, and both of them were especially kind to Alex. We hope that their replacements will do a good job, too.

Cheers to our fantastic long-time members of Alex’s support team! Even though his behavioral therapist and music therapist are now in supervisory positions and his respite care worker has another full-time job, they have continued to keep Alex on their caseload when they had to let other clients go. We are extremely thankful for these three whose kindness, dedication, and patience have helped Alex make significant progress.

Jeers to the manufacturer of paliperidone that had to recall their medication because the time-release aspect did not work properly! Apparently, this company has decided to cease production of the drug, creating a shortage.

Cheers to how well Alex has responded to medication reduction this year! With the shortage of paliperidone, we cut his dose in half this month with the blessing of his psychiatric nurse practitioner, and he has done remarkably well. In addition, he weaned off one medication completely this year, and he is on a lower dose of another. Praise God that he doesn’t need as many medications to remain calm and content!

Jeers to anxiety that makes Alex’s life more difficult! Like his mother, he thinks too much and worries about things that will likely never happen. Nonetheless, his fears are very real to him, and he relies upon schedules and lists to help him cope.

Cheers to the coping skills Alex has learned through behavioral therapy! Now, instead of escalating into agitation and meltdown, he has learned to express his feelings in a reasonable way, telling us that he’s upset. He’s also learned that sometimes he needs to sit and be quiet, but other times he wants to discuss what’s bothering him. This learning to be in tune with his feelings has been a huge improvement and a help to him and to us.

Jeers to the majority of autism research that does nothing to help families currently struggling with autism! Moreover, while certain factors contributing to autism exist, most mainstream medicine ignores these potential causes.

Cheers to the work of Professor Chris Exley of Keele University in England, who has discovered a link between aluminum toxicity and Alzheimer’s disease and autism! Moreover, his research indicating the value of drinking silicon-rich mineral water, such as Fiji and Volvic, gives hope that a simple solution may exist to lessen the effects of aluminum in the body.

Jeers to the obstacles autism presents! From impaired language to difficulties with social skills to health issues to poor motor skills, autism makes life harder than necessary. Add in intense anxiety that can lead to aggression and the tendency to wander from places of safety to ponds, railroad tracks, and highways, and people with autism are put in grave danger.

Cheers to the progress Alex has made in 2017! Thanks to God’s blessings and healing, along with Alex’s tenacity, he continues to overcome challenges and get better with time. May the coming year 2018 bring our children with autism health, happiness, and hope!

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

Finishing Strength

 

In our house, the month of May tests our endurance. As Ed and I finish up teaching for the school year, we find ourselves engaged in grading multiple papers and exams, sitting through end-of-the-year meetings, and trying to maintain the enthusiasm we had in August with students who would rather be outside enjoying the nice weather. Even though Alex continues his schedule of support services throughout the summer, May always seems to be difficult for him, too. Because he is quite intuitive, he likely senses the stress Ed and I feel trying to accomplish everything we need to do, despite our best attempts to keep things calm for Alex. In addition, the high pollen counts and unpredictable weather with varying air pressures along with his concerns about severe weather, namely thunderstorms and tornadoes, makes May difficult for him, as well.

Recently, he apparently caught the virus that was going around and making people lose their appetites. Fortunately, he doesn't seem to be in any discomfort and hasn't complained of anything bothering him. Not wanting him to lose weight and strength, we have encouraged him to eat and drink whatever appeals to him. Although he has been compliant, his diet still includes a limited range of soft foods, such as applesauce, pudding, and scrambled eggs. We keep trying to tempt him with foods we know he loves, but even when shrimp or meatloaf nears his mouth, he makes a face indicating disgust and tells us he’s not hungry. Our formerly meat-loving son who would eat nearly anything placed before him has become a vegetarian who favors fruit. However, we know with Alex that phases pass about as quickly as they appear, so we try not to fret about his current eating habits.

Other than his appetite, Alex appears healthy and content, still energetically happy hopping through the house and enjoying his usual activities. However, we have noticed that the tremor in his hands caused by one of his medications seems to have increased, making eating more difficult for him, and requiring more assistance from us. In addition, he is not as eager to go places as he usually is, which makes us think he’s still not completely recovered from the virus he had a couple of weeks ago.

The other day, Ed mentioned that he had noticed a white film in Alex’s mouth when giving him pills in the morning, and he wanted me to take a look in his mouth. Armed with a penlight, I couldn’t see any redness or sores, but I did see the telltale milky film we see when he has yeast overgrowth in his digestive tract. After more than a year of having the yeast under control, the beast sadly seems to be back. With the extremely warm and wet weather we’ve been having along with an immune system compromised by a strange virus, Alex was susceptible to the invasion of yeast in his digestive system. No wonder he hasn't been interested in eating much! However, we were thankful that the usual primary symptom––irritability, sometimes displayed in a meltdown––has not been present.

Fortunately, we had the prescription medication Diflucan on hand and gave him a dose on Friday and will give him the second dose tomorrow, praying that one round of antifungal will wipe out the yeast in his digestive system and heal him. Next weekend, we will take him for his routine six-months lab tests, which will help his doctors and us see if anything else could be contributing to his change in appetite and increased shakiness. In addition, he has his usual biannual appointment scheduled in a couple of weeks with the nurse practitioner who oversees his anxiety medications, so we can consult with her about our concerns. Hopefully, he’ll be all better by then so that we can spend the appointment talking about how well he has done since he last saw her in December.

With all the other stresses at the end of the school year, I really didn’t need having to worry about Alex’s normally healthy appetite being off. Feeling overwhelmed and fatigued, I have briefly toyed with the idea of having the lesson plans for the final two weeks of school for my middle school students revolve around watching YouTube videos while playing with fidget spinners. Of course, they would be thrilled, but I know that’s not what's best for them. Moreover, I know that I would not be giving them my best, which I always strive to do. With eight class days to go with my students, I will pray for strength, patience, and peace, knowing that God has me where He wants me to be for now, relying upon Him and waiting for what He has planned, and continuing to hope for Alex’s complete healing.

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah 40:3

No News Is Good News

 

After writing this blog for six and a half years, I took four weeks off from writing. With Christmas and New Year’s Day falling on Sundays, I figured a holiday vacation from blogging would be understandable. Then I gave myself two more weeks of break and considered that perhaps the blog was finished for good. My last entry about Alex’s birthday and how well he was doing would have been a nice “And they lived happily ever after” ending to a project I started long ago. However, with encouragement from my mom and my husband (both of whom I suspect secretly enjoy searching for typos to correct for me), I realized that I needed to refocus on the reasons I write about Alex.

My intention regarding writing about our family is to show others how autism impacts our family life on a daily basis––good and bad. For families like us who are raising children (and for us now, an adult child) with autism, I wanted to give them hope. Through all the ups and downs, we have come through this with our faith and love stronger and a young man who makes us proud every day. Moreover, I originally began writing the blog for Alex. In my first entry, I explained that I knew how important writing Alex’s history was if for no one else but him so that he could see how far he has come. With a renewed sense of purpose, I pick up my laptop again after a month to record Alex’s life experiences. As a confirmation that I should continue, on Friday I was surprised, pleased, and honored to have Feedspot.com name One Autism Mom’s Notes as one of the “Top 50 Autism Blogs and Websites for Autistics and Autism Parents.” If I had any lingering doubts about whether to proceed, God put them to rest with that.

Without a doubt, 2016 was a wonderful year for us. Alex made great progress in his social skills that allowed us to enjoy family outings to concerts, sporting events, parks, and restaurants. We even savored simple everyday events, such as going grocery shopping or watching television together. His therapists have been delighted with how well he has learned language and coping skills to deal with anxiety, being able to verbalize when he’s worried. Even better, he can decide to conquer his fears and declare that he’s “not going to get upset” or that he’s “done being mad.” This is a huge step because he recognizes that he can take control of his emotions. In addition, we are thankful that his doctor gave him a clean bill of health along with the title of  “easiest patient of the day” in December. After struggling with yeast overgrowth in his digestive system that made him irritable and agitated for years, Alex seems to have that behind him. Although I knew that God would eventually heal him of the yeast overgrowth, realizing that we hadn’t dealt with thrush for several months was a pleasant surprise and blessing.

Most of all, we discovered that the professionals who truly knew about autism were correct in telling us that young men with autism struggle until they reach their mid-twenties, and then they improve significantly. We had been holding onto that promise with hope, and the closer that Alex got to age twenty-five, the more we realized it to be true. With his health greatly improved and his anxiety under good control, Alex can reach his full potential without being burdened by illness and fear. I have no doubt that God has great plans for my son, and I eagerly anticipate what the future holds.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it?” Isaiah 43:19

When Someday Finally Arrives

 

This past week was one that should have thrown Alex off course, but it did not. With his dad and I settling back into school routines the past few weeks, Alex could have resented that we are not always home. With additional appointments and job responsibilities of meetings and schedules that strayed from their normal times and interfered with family dinners twice this week, Alex could have felt anxious. With his own schedule packed every day meeting with one of his support team, Alex could have been overwhelmed. However, he remained calm, cooperative, and pleasant all day every day. Moreover, he thoroughly enjoyed dinners downtown four evenings as part our community’s annual Popcorn Festival and seemed to ignore the intense heat and sensory overload of having a meal in a crowded outdoor pavilion. I would venture to say that he was having a grand old time sharing meals with the other festival goers. A few years ago we never could have dreamed that he would handle a week like last week that amazingly well.

A few days ago I was explaining to a friend what Alex was like before we had to hospitalize him for extreme anxiety and agitation. I discussed his drastic change in grooming habits from wanting to be immaculate to being extremely difficult about brushing his teeth and combing his hair. His sleep patterns became erratic, and we dreaded when he would awaken because he was usually belligerent. In fact, most of the day he was a ticking time bomb ready to explode in anger and aggressive behavior, blaming us for anything that went wrong and even things that he simply imagined were wrong. Something had stolen our sweet son from us and sent all three of us into the depths of despair, a period I call “when the wheels fell off the bus.” However, our desperation and Alex’s extreme behavior propelled us to find the help we needed, and God led us to professionals who understood the motivation behind his behavior, and more importantly, knew how to treat his extreme anxiety that triggered the aggression.

While we would prefer to forget those terrible times, stowing them away in an attic of our minds where we never have to see them, remembering them from time to time can be helpful. For others going through similar turmoil, I share our experiences as a way to give them hope that they, too, will get through ordeals and be able to look forward to a time when their lives will return to a new “normal,” whatever that may be. When I look back on the times we were waiting for Alex to get better––to not throw things in anger, to not overreact about minor things, to not live in constant fear––I just kept praying and thinking that someday we would look back on those days and feel thankful they were behind us.

Along with helping others, recalling those upsetting events makes us even more grateful for the progress Alex has made. When Alex refused to talk to us, overwhelmed by his emotions, we prayed that someday we would be able to have real conversations with him where he could express what he was thinking and feeling. Now that the words flow more easily for him, we are thankful that someday has arrived. When we couldn’t take him any place and basically kept him under house arrest because his behavior was so unpredictable, we hoped that someday we could enjoy typical family outings. Now, as we sit with him at restaurants and concerts and sporting events and family gatherings without any fear that he will erupt in anger, we feel fortunate that someday has arrived. When at least one of us always needed to be with him because we didn’t trust what he might do unsupervised, we waited for the day when he could behave himself without constantly being accompanied by us. Now, he goes off on his own to read, watch television, do Google searches on his iPad, and Ed and I never worry about what he’s doing because he has regained our trust. Someday has arrived, and it is sweeter than we could have ever imagined.

As we reflect on how autism has impacted Alex’s life––and in turn, ours––we realize that waiting is a key element. I can recall all the different things we were waiting for him to be able to do finally, such as talk, toilet independently, or sleep through the night, and eventually he was able to accomplish these seemingly simple tasks after many struggles. One would think that I would clearly remember the exact dates of these milestones––when those days we’d prayed for had finally arrived––but they remain vague in details yet strong in feelings of relief and gratitude.

What gives those days of accomplishment even greater meaning is that they remind us that God is always faithful and has a plan for Alex’s future. When I wonder if Alex will ever be able to live on his own, I remember that I wondered if he would ever be able to use the toilet on his own. When I worry what will happen to Alex when I’m not able to take care of him, I remember that God provided mental health caretakers who took precious care of him and knew what to do when we did not. When I pray and hope that God will heal Alex of autism, I remember all the times He restored Alex’s health and led us to caring and dedicated medical professionals who provided what Alex needed to be healthy. By looking back on how far we’ve come, I realize that someday we’ll look back on these times and our current concerns and know that God had us in the palms of His hands, just as He always has. Even though we don’t know when that day might be, we can trust as we wait, knowing that someday will eventually arrive.

“For the vision is yet for the appointed time; it hastens toward the goal and it will not fail. Though it tarries, wait for it; for it will certainly come, it will not delay.” Habakkuk 2:3

Looking Back, Looking Foward

 

This summer, one of my projects has been starting to convert our old home movies on video from VHS to DVD format. Last weekend, I made  a DVD copy of our wedding video from twenty-eight years ago, which Ed and I enjoyed watching, reminiscing about our special day and remembering little moments that we had forgotten over time. As I watched a younger version of myself walk confidently down the church aisle, I recalled that I felt more nervous than I appeared. However, I also know that at the time I felt certain about my faith in God, my love for Ed, and my hope for our future. What I did not know as that smiling bride is how all three of those would be tested by raising a child with autism and how those challenges would actually strengthen my faith, love, and hope.

Because Alex has been doing so well this summer, I have had more time to do projects that I have been postponing when he needed me to entertain and/or supervise him nearly constantly. Instead of just surface cleaning the house, I have had the time to do deep cleaning, which has led me to some discoveries that have taken my breath away for a moment. When Alex was extremely agitated four years ago, he would write seemingly random numbers in ballpoint ink on any surface he could find. Most of the time, I would see these numbers right away and scrub them off the walls, the toilet, the television, etc. What I was unable to erase, I found clever ways to cover with paint or wallpaper or strategically placed curtains, pictures, and tablecloths. For one thing, I didn’t want Alex to think this behavior was acceptable, and for another, I didn’t want any reminders of his temporary insanity.

As I wiped down woodwork and doors this summer, I discovered tiny reminders of that frightening and uncertain phase when Alex’s behavior spiraled out of control. Although I thought I had eliminated those scrawled numbers he had written in a state of agitation, I ran across numbers in plain sight that I shouldn’t have missed. I suspect I just thought they were nicks or spots on the woodwork. On three closet doors in three separate rooms, Alex had written numbers right at my eye level. Unlike many of the numbers he wrote all over the house, these showed control because they were small, even, and legible––a date, the year 2001.

To be honest, I’m not sure what the significance of that date was to Alex; perhaps it made an impression on him because the year after that we moved to this home from our old house. To be fair, he wrote all kinds of dates everywhere, and these just happened to be ones I somehow missed seeing. However, these numbers left behind, much like watching old videos, reminded me just how far we have come. Unlike the confident bride filled with faith, love, and hope, at that time I was a terrified mom whose faith, love, and hope were tested mightily because I didn’t know how to help Alex deal with whatever fears and frustrations were making him behave in such a bizarre way. However, I had to rely upon my faith in God, my love for Ed and Alex, and my hope for the future to get through an ordeal that made Alex, Ed, and I better and stronger.

As much as I’d like to erase completely those terrible times––just as I erased and hid the numbers Alex wrote––from my memory completely, I know that remembering them is just as important and perhaps even more important than remembering the good times that we preserve so carefully in photographs and videos as well as in our minds. Stumbling upon those dates written on the doors was necessary to remind never to take the blessings of God for granted. When we were desperate, we prayed for answers, and He gave us healing, hope, and help. Moreover, we were supported by family and friends who prayed for us during those difficult times.

Approaching the end of a summer that has been our best ever, thanks to how well Alex is doing, thereby allowing us to enjoy activities and everyday life as a family, we know how blessed we are because of what we have overcome. Ed and I often compare notes on how well Alex handled situations that would have upset him in the past, and we take great pride in all of his accomplishments, especially since autism has made his life more difficult. When I look back over old photographs or old blog entries, I see that we thought he was doing well at other times, and we were grateful for that progress. However, we did not know that he could be as happy and healthy as he is now. Not only are we grateful for these blessings, but we also have even stronger hope for our future, knowing that God has a greater plan for Alex’s life than we can envision. As we look back on where we have been, we can look forward confidently, knowing that God holds Alex’s future safely in His hands.

“The Lord will work out His plans for my life––for Your faithful love, O Lord, endures forever. Don’t abandon me, for You have made me.” Psalm 138:8

The Possible Dream

 

A few days ago, my friend and colleague Debbie posted on her Facebook page that when she taught the vocabulary word quest this week, she suddenly burst into singing “The Impossible Dream,” in which quest is a key part of the lyrics. Unfamiliar with the musical Man of La Mancha, her students had never heard that inspirational song. As she noted, we are too busy preparing students for standardized tests that we often miss out on teaching them “glorious knowledge,” which makes her sad. However, she believed this lesson was too valuable to miss and showed a You Tube video of the song, which impressed her students. In fact, I’ll bet that when they look back on her class, “The Impossible Dream” will stand out in their memories much more than any state-imposed standards.

When I was learning to play piano in the 1970’s, many of the songs I learned came from musicals. After seeing The Sting, I wanted to learn to play “The Entertainer,” and I also learned to play one of my favorite songs at the time, “Day By Day” from Godspell. I suspect I drove my family crazy as I repeatedly played on the piano “If I Were a Rich Man” and “Fiddler on the Roof” from the popular musical of the same name. As I recall, my mom would instead request that I played “A Time for Us” from Romeo and Juliet, which she found more harmonious. In addition, I learned how to play “The Impossible Dream” and tried to master the dramatic flourish I felt it deserved. Kids today don’t know what they’re missing by not being familiar with those great songs.

Yesterday, I found myself humming “The Impossible Dream” throughout the day and even looked up the lyrics to make sure I remembered them correctly. As I read these words after many years of not thinking about them, I realized that they spoke to my life as an autism mom, always striving and seeking to help Alex overcome obstacles.

“To dream the impossible dream

 To fight the unbeatable foe

To bear with unbearable sorrow

To run where the brave dare not go…

To fight for the right

Without question or pause

To be willing to march into Hell

For a heavenly cause

And I know if I’ll only be true

To this glorious quest

That my heart will lie peaceful and calm

When I’m laid to my rest…”

“The Impossible Dream” lyrics by Joe Darion

On the days that dealing with autism no longer feels like a “glorious quest” and feels more like an exercise in frustration, I have to dig deep in my faith to remember how important making Alex better truly is. Fortunately, Alex, who has the childlike faith Jesus describes, reminds me to be patient and to never give up. The other night I asked his opinion about an event that might happen in the future, and he looked directly at me and simply said, “W.A.S.” Clueless as to what that answer meant, I asked him about his response. He explained, “W.A.S.—wait and see.” Of course, this is one of Alex’s standard responses to many questions; he has enough faith to wait for outcomes and trusts that everything will be fine in the end.

Last night, he was watching a Chicago Cubs baseball game on television with Ed; he has become a big Cubs fan and is delighted that they have a great team this year. However, in the sixth inning, the opposing team scored seven runs, putting the Cubs behind with a score of 9-3. Ed, who tends to be more pragmatic than optimistic, basically wrote off the game then and there. Alex, on the other hand, was not ready to throw in the towel, knowing that there were more innings to play. Using his standard “Wait and see” line, Alex never gave up hope until the last inning, even though the Cubs eventually lost 13-5. As Ed noted, Alex is the true Cubs fan since Cubs fans have always been known to dismiss losing seasons by saying, “Wait ‘til next year.” Hopefully, Alex’s optimism will be rewarded with a winning team this season so that he doesn’t have to wait too long.

After the baseball game, Ed supervised Alex’s bedtime routine instead of me because I have a cold and wasn’t feeling well. After listening to Alex’s bedtime prayers, Ed commented that Alex is so earnest in his prayers, making sure that he doesn’t forget to name anyone in the list of people he wants God to bless. I have to believe that God appreciates Alex’s pure love for others, his trusting faith, and his unending hope. As I keep working toward this seemingly impossible dream of complete healing for Alex, I know that with God all things are possible. I have to believe that He hears the earnest prayers of my beloved son and whispers in his ear, “Wait and see.”

“Jesus looked at them intently and said, “Humanly speaking, it is impossible. But with God everything is possible.” Matthew 19:26

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

While We Wait

 

Today marks the first day of Advent, the season leading up to Christmas. In the Christian Church, Advent, from the Latin word adventus meaning arrival, is a time of anticipation, waiting for the celebration of the arrival of Baby Jesus. In the business world, this first day of Advent comes between the significant shopping days of Black Friday and Cyber Monday, and merchants await the profits to be gained from eager holiday shoppers. For most people Advent is a time of waiting for Christmas marked by a flurry of activity in preparation for this important holiday.

Like many people, Alex eagerly anticipates Christmas, his favorite holiday, counting down the days on the calendar. Like me, Alex is not by nature a patient person. However, he relies upon his beloved numbers and measuring tools of clocks and calendars to help him deal with waiting. Moreover, he has adopted a philosophy about the future, often telling us: “Wait and see.”

This week, we have had our patience tested in situations where we had to wait. On Friday, Alex’s ever-punctual music therapist was late for the first time because he was involved in a meeting that ran longer than he had anticipated. Although he called to let us know he would be late, I knew that Alex was becoming more anxious every minute he had to wait. Checking his watch and the clock on the wall, Alex was patient at first, but as time passed, he became more and more concerned whether his music session would ever happen. Adding to his frustration was that he was looking forward to singing Christmas songs that his therapist had promised the previous week. As I talked him through his anxiety, I gave him the choice to leave or stay, and he chose to stay. The wait was worth the effort because when his therapist arrived, they were able to sing the songs Alex had been waiting to sing all week long. Of course, Alex’s first request was “The Twelve Days of Christmas,” a carol about waiting for the good gifts to arrive.

This weekend, as I ran some errands, I also had to muster up my own patience, as the official start of the Christmas shopping season brought more people out seemingly to get in my way. As I waited in my car for people who acted as though they’d never seen green traffic lights before, waited for people who seemed to want to stand endlessly in front of items I needed to buy, and waited in lines to check out behind people who couldn’t make decisions about how they wanted to pay, I took deep breaths and tried to keep my peace. Knowing that the month of December will be filled with these moments of waiting, I found myself questioning: What do we do while we wait?

A quick concordance search of the Blue Letter Bible online shows that the word “wait” appears in 70 verses in the New Living Translation of the Bible and in 101 verses in the King James Version of the Bible. As I scanned through these verses, I noticed that not only are we told to wait, but we are also told how to wait. The verb “wait” is often followed by the adverbs “patiently” and “quietly.” Scriptures also tell us to wait “confidently,” “eagerly,” and “with eager hope.”

Consequently, we know how we’re supposed to wait, but I still struggle with what I’m supposed to do while I wait. From the time Alex was diagnosed with autism, I have been waiting for him to get better, sometimes patiently waiting, but often times restless and frustrated when progress seemed slower than I thought it should be. To fill my time, I focused on autism research, seeking answers to my questions and trying to find ways to make Alex better.  When I find myself too focused on the future and the “what if’s” both positive and negative, I have to remember to live in the present and have faith that God has already figured out the future for Alex.

When I question Alex about future events, such as which sports team he thinks will win a game or what he thinks the weather forecast will be, he reminds me to watch for what the future holds by saying, “Wait and see.” Not only does he understand that waiting––even though he and I both dislike that process––is part of life, but he also holds anticipation for what is to come. Moreover, he has an expectation that waiting will bring a reward. To understand the value of waiting requires peace brought with patience along with hope bolstered by faith. Alex’s complete and unquestioning faith in God allows him to believe that if he waits, he will see something good, even if it’s as simple as being able to sing “The Twelve Days of Christmas” with his music therapist.

During this sacred yet busy time of Advent, I pray that I remember to be patient as I wait, knowing that good things will arrive in their good time. Just as certainly as I know that Christmas will arrive on December 25^th, I also know that Alex will get better in time. Trusting God, I will strive to wait patiently, quietly, eagerly, confidently, and with eager hope at what He has planned for Alex’s future, which I have no doubt will be something to see.

“Such things were written in the Scriptures long ago to teach us. And the Scriptures give us hope and encouragement as we wait patiently for God’s promises to be fulfilled.” Romans 15:4

Wait and See

 

As Autism Awareness Month comes to a close this week with the end of April, the flurry of media reports will likely end, and autism awareness will be primarily put aside for another year except for those who live with autism on a daily basis. After twenty years of researching autism, trying to find ways to help Alex, I’ve found bits and pieces that have confirmed my suspicions and that have made some improvements along the way. However, no real breakthroughs in autism research have occurred in the past two decades. Debates still linger regarding the causes, best treatments, and even whether the increase in autism rates is due to more cases or better diagnosis. Basically, most of the research being done and reported isn’t making much of an impact on the day-to-day life of those families whose children have autism.

Nonetheless, we move forward with hope. When Alex was first diagnosed with autism nineteen years ago, I remember a statement from the first book I read on autism that has stayed with me all these years, more than any other piece of research I’ve done over time. Essentially, people with autism usually continue to get better as they get older, even into adulthood. When Alex was little, the theory of windows of opportunity for learning, emphasizing developing the young child’s brain, was popular. Certainly early development is important, and early intervention does help children with autism. However, neuroplasticity research has shown that the brain continues to develop over time, even into adulthood, well beyond that window of age four or five. Shortly after Alex’s autism diagnosis at age four, I felt a frantic sense of trying to help him master skills and pull him through that window before it closed forever. Thankfully, scientists have recognized that learning is a lifelong process, and indeed, “old dogs” can “learn new tricks.”

Along with remembering that people with autism tend to improve over time, I also keep in mind the wisdom of a former student. Shortly after we found out that Alex, indeed, had autism, I told my seventh grade honors English students that I had been absent because my son was being tested and was diagnosed with autism. In addition, I explained that he also had hyperlexia, a rare condition where children have advanced reading skills at a very young age along with problems with language and social skills. Specifically, Alex had taught himself to read by the age of three, yet he could not speak well. As they sympathetically listened, I told them that he would need speech therapy and that we hoped he would get better in time. Perhaps sensing my worries, one of my brightest students reassured me, “But, Mrs. Byrne, if he can read, he can do anything!” Over the years, her earnest optimism has lifted my spirits, and Alex’s ability to read has not only helped him to learn but also has provided him with a constant source of entertainment.

After reading thousands of pages of research on autism, I keep searching for the one piece of information that will make all the difference for Alex. When I begin to think nothing new will appear, I am motivated to continue because I hear in my mind Alex saying one of his favorite phrases, “Check it out.” Like me, he knows the power of the written word and believes that he will find all the answers to his questions in books and online. I watch him Google information on his iPad several times a day and reach for his beloved reference books when some burning question emerges in his mind. Perhaps he has watched me over the years reading books and online research and has imitated that behavior, or maybe he has inherited my tenacity never to be satisfied until all the puzzles are solved. Last week, he bought a huge medical book and spent hours perusing some of its more than one thousand pages. A wonderful irony would be that he figures out the mysteries of autism before I do—that he only needed me to teach him how to do research so that he could find the answers on his own that I’d been seeking for years.

Besides the eternal hope I carry that Alex will someday be completely healed of the symptoms of autism, I move forward with the patience I have learned from raising a child with developmental delays. Patience does not come naturally to me, but realizing that Alex has to do things on his own timetable has helped me learn to wait with anticipation instead of frustration. My need to micromanage his world has been replaced with my firm belief that God is in control and will take care of Alex. By trusting God, my faith has grown in unexpected ways, and as I learned many years ago, autism does get better in time. As we move forward into Alex’s adulthood, we continue to see progress, and I fight my impatient need to wonder what the future holds for Alex. When I become anxious, worrying whether he will ever become independent, I look back on how far he has come, remind myself that God has always taken care of us, and remember the reassurance of my son, who often wisely advises me: “Wait and see.”

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