Sunday, July 16, 2017

Marriage and Raising a Child with Autism

 
Twenty-nine years ago, Ed and I were married and said our vows in front of God and our family and friends. At the time, we had no idea how those promises of commitment would be tested over time, especially in raising a child with autism, something we never anticipated. Nonetheless, the struggles we have faced have only served to make us stronger as people and our marriage stronger in faith and hope and love.

Although the statistic of an 80% divorce rate among parents of children with autism is often presented as truth, studies have shown this to be untrue. In fact, research done by Freedman and Kalb published in 2011 found “no evidence to suggest that children with ASD [autism spectrum disorder] are at an increased rate for living in a household not comprised of their two biological or adoptive parents compared to children without ASD in the United States.” Moreover, “results show that a child with ASD is slightly more likely than those without ASD to live in a traditional household.”

So, what keeps a marriage solid in the face of the obstacles autism presents in family life? I can only speak from our own experience, but I can clearly point to certain factors that have not only kept our marriage together but have also made it stronger.

First, one of the most important components of our marriage is our shared love and devotion for Alex that guides nearly every aspect of our lives. Trying to make his life the best it can be consumes our thoughts, time, and energy. Our shared goals encourage us to work together harmoniously to determine the best ways to help our son. As Alex makes progress, we celebrate together, knowing that our collaborative effort has helped make those milestones possible.

In addition, we know the value of tag-team parenting. Raising a child with autism is often daunting and can test patience and endurance. When one of us is flagging, the other steps in to give the other a needed break from the responsibilities of parenting. Sometimes we simply back the other one up by reminding Alex to thank the other parent or reiterating instructions we have heard the other one give him.

Also, we support each other by giving encouragement and praise often. Since these children don’t follow the typical patterns of development, we frequently find ourselves in situations not described in childcare manuals. Walking on uncharted paths can be scary, and we need reassurance that we’re doing the right thing. I seek guidance from Ed regarding decisions about Alex, trusting his judgment, and he consistently conveys that he completely trusts my judgment in all matters regarding Alex. Our mutual respect for one another has significantly strengthened our relationship, especially during uncertain times when we struggled to find what was best for Alex.

Another key to our marriage is division of labor. Since I am a morning person and Ed is a night owl, we take turns dealing with Alex when we are at our best. When we homeschooled Alex, we divided subject matter according to our strengths, which meant that I taught him German while Ed taught him math. He trusts me to make medical decisions, but he goes along to all of Alex’s doctor appointments and asks questions to show his support. His calm balances my anxiety, and his assertiveness makes me less timid. We complement each other well.

At other times, teamwork is essential, and we have learned to work together well. Our ability to fabricate creative details together to soothe Alex’s worries on the spur of the moment is sometimes nothing short of amazing. While we weave stories with more fiction than fact, we are able to convince Alex that he has nothing to fear. Our combined skills enable us quickly and quietly to remove Alex from a situation he suddenly finds overwhelming. In fact, we often joke that we could work for the Witness Protection Program because we can get Alex in and out of places without anyone ever knowing he was there. With just a look between us, we know what we need to do without saying a word, working together to get Alex to a secure and serene place.

Certainly the most essential pillar of our marriage is our faith. Despite our different upbringings as a Catholic altar boy raised in New York City and a Midwestern Protestant girl, we have found common ground in our Christian faith. As our faith has been tested, we have prayed harder for patience, strength, and Alex’s healing. When our prayers have been answered, we have thanked God for His goodness. As parents, we have been most proud of the faith Alex has developed, knowing that God will always take care of him.

On this anniversary of our wedding, we celebrate another year together, but perhaps more than typical couples, we know how precious our marriage is because it has been tested. While dealing with the obstacles of autism could have taken its toll on our relationship, God has given us everything we needed and allowed our love to grow stronger. Moreover, through His gift of Alex, we have a daily reminder of what is most important in life, and we are able to experience true joy watching our son, who––despite autism––finds happiness in the simple things of life.

“Children are a blessing and a gift from the Lord.” Psalm 127:3

Sunday, July 9, 2017

Increasing Intelligence in Autism

 
For weeks, I have been setting aside autism research to study once I had the time and the concentration needed to read and understand these articles. Since Alex is feeling better, and my to-do list is getting shorter, I delved into some of those research articles I had put away for future reference. Yesterday, I ran across an interesting article published online in Spectrum on May 13th of this year entitled, “Many children with autism get significantly smarter over time.” [To read this article, please click here.] Written by Katie Moisse, this article summarizes research done by Professor Marjorie Solomon and her colleagues at University of California, Davis, MIND Institute. This research was presented in San Francisco at the 2017 International Meeting for Autism Research held in May.

Using data from the Autism Phenome Project, a long-term study of children with autism, Professor Solomon and her research team looked at the IQ scores of 20 girls and 82 boys diagnosed with autism. Comparing these children’s IQ scores at 2 to 3 years of age to their later scores between ages of 6-8, the researchers found that IQ scores were not stable in these children. In typical children, IQ scores tend to stabilize around the age of 5. However, half of the children with autism in this study had increased IQ scores between the ages of 2 and 8. These findings sharply contrast a 2013 study that found IQ scores varied little from childhood until middle age in people with autism.

Professor Solomon and her colleagues divided the children with autism into four groups. First, the “high challenges” group, which made up 27% of the children in the study, started with IQ scores around 44, and these scores dropped over time to an average of 36.

The second group made up 18% of the study group; named the “challenges” group, they averaged IQ scores of 62, which remained stable over time.

A third group, the “lesser challenges,” made up 22% of the children studied. This group started with IQ scores around 100, considered average intelligence, and their scores improved to about 111. These children showed the most improvement in autism severity over time, as well.

The fourth group, which comprised approximately one third of the children in the study, was called the “changers.” These children started with below average IQ scores (around 65), but they made noticeable progress with time, averaging later IQ scores just below 100. In addition, the changers reflected the most progress in verbal ability over time.

In addition to studying the changes in IQ scores, the researchers noted different patterns of progress regarding communication skills, autism severity, and behaviors. Behaviors were specified as internalization, such as anxiety, and externalization, such as hyperactivity. Over time, all four groups––high challenges, challenges, lesser challenges, and changers––exhibited fewer negative behaviors. Professor Solomon notes that this study should encourage families with autism, stating, “…over one half of individuals are seeing big IQ gains over time, and all are seeing internalizing and externalizing behaviors drop off.”

Certainly, as a parent of a child with autism, I find the results of this study hopeful, not only because these children’s IQ scores increase, but also because their negative behaviors decrease. However, I’m also curious about the connections between improvements in IQ scores, communication skills, and behavior. Since IQ tests often tend to be related to verbal skills, perhaps as the children’s communication skills improve, their IQ scores more accurately reflect their true intelligence. Maybe when their behavior improves, they can better focus on learning and testing, which could account for their higher IQ scores. Moreover, I wonder what positive effects various therapies (speech, behavioral, occupational, etc.) might have upon these children, reducing their autism severity and improving their communication, behavior, and ability to learn. These children might not be actually getting smarter; they just gain the skills they need to show how much they really do know.

Nonetheless, any improvements, whatever their cause, are reasons to celebrate. As we have seen with Alex, the better he can manage anxiety, the easier the words can flow to express what he’s thinking and feeling, and he can then demonstrate what knowledge he has been storing in that amazing mind of his. Hopefully, this research will remind people never to underestimate the potential of children with autism because with time they do, indeed, get better.

“But there is a spirit within people, the breath of the Almighty within them, that makes them intelligent.” Job 32:8

Sunday, July 2, 2017

What a Difference a Week Makes!

 
After weeks of waiting for Alex to recover from the ill effects of thrush and essentially waiting for our anticipated relaxing summer to begin, we had breakthroughs this week. Our prayers were being answered, and we were reminded that God puts people in our lives so that we can support each other.

On Monday, the office of the nurse practitioner who prescribes Alex’s medications for anxiety returned my call after three weeks of waiting to hear from her. Her receptionist told me that his lithium level was a little higher than normal and that we should reduce his bedtime dose. In addition, the nurse practitioner wanted us to have his lithium level tested in a month, and she can see him in a few weeks, instead of waiting until the middle of September, as we’d originally been told. Although we already knew the level was too high, had reduced the dosage three weeks ago, and had retested the level and found it thankfully back in normal range, I was glad that her professional assessment was the same as my mother’s instinct. Moreover, I’m pleased that we don’t have to wait as long to see her as we had previously thought.

On Tuesday, I found out that one of my closest friends, who has an adult son with disabilities, will soon receive the Medicaid waiver providing services for him after a long wait. As I explained to her, this is like winning the lottery for parents of children with disabilities because we can finally get the support we need for our kids. I think she’s a little skeptical, but I pray that her son will qualify for services that will not only make his life easier but also his parents’ life, too.

On Wednesday, I chatted with my neighbors who also have a son on the autism spectrum. Even though their son is higher functioning than Alex, we share the same worries about how our sons will cope in the adult world, especially if we’re not right there to help them. They also told me that our new neighbors, whom they have met but I have not yet, have a child with autism. How mind-boggling it is that three families within a few houses of each other are dealing with autism! Of course, some experts would simply attribute this “coincidence” to better diagnosis, rather than an autism epidemic.

On Thursday, Alex had his best music therapy session in a month. Instead of acting lethargic and irritable, he was engaged and good-natured––a positive sign that he’s finally feeling better. He even requested two new songs: “Take Me Out to the Ballgame” and “Go, Cubs, Go,” a sure sign that he’s been watching a lot of Chicago Cubs baseball games on television this summer.

On Friday, Alex showed that he’s feeling better by requesting to go hiking. Apparently, his energy levels are returning because he did a great job walking the trails at a nearby wildlife preserve, despite the mid-eighty-degree heat. In addition, we have noticed that his appetite seems to be returning, as the variety and amount of food he’s eating has increased. Along with the physical improvements that indicate healing, his mind is sharper, as evidenced by improved speech in his comments, questions, and answers. Thankfully, the brain fog that accompanies thrush appears to have vanished, and Alex is doing so much better.

Yesterday, we took him to his cousin’s graduation open house, and he did remarkably well, despite all the people and activity there. He was pleasant and even did a good job of speaking to people. In contrast, the previous week at this other cousin’s graduation open house, he was anxious and overwhelmed, and we wound up not staying very long. However, a positive experience there made a lasting impression. My sister-in-law’s sister is very sweet to Alex, and she made a special point to come talk to him at the open house. Her kindness did not go unnoticed because Alex has added her to his nightly prayer list this week. As I have said before, I have to think that God hears the earnest prayers of my son, who appreciates those who are kind to him.

Although I found the month of June frustrating, waiting for Alex to get better, God answered our prayers for healing. As a new month begins, we have hope that Alex will continue to improve so that we can enjoy the relaxing summer I had envisioned. Although I don’t know what our plans will entail, I do know that I will be grateful that Alex is feeling better so that he can live life to the fullest. As Alex frequently reminds us, “Wait and see!”

“Lord my God, I called to You for help, and You healed me.” Psalm 30:2

Sunday, June 25, 2017

Held Up

 
The month of June hasn’t turned out as I’d planned. After over a year of not dealing with thrush, poor Alex has had one of the worst bouts he has ever had. Not only does the fungal infection make his mouth and throat sore, but the illness also causes him to develop terrible dandruff and acne. Besides the physical effects, the yeast overgrowth brings on brain fog that makes him less mentally sharp, especially when it comes to verbalizing what he wants to say. On top of that, we discovered that his lithium medication levels were too high, causing an increase of tremors that make using his hands extremely difficult. Since he had been doing quite well for many months, I was eagerly anticipating summer so that we could relax and enjoy activities together as a family. Instead, we have held up on doing things until Alex feels better.

Rather than going to restaurants, one of Alex’s favorite things to do, we have been literally spoon feeding him applesauce, coconut milk yogurt, eggs, and baby food. Our blender has been put to good use making fruit smoothies and rice milk ice cream shakes that soothe his throat and fill his tummy. Because he has lost some weight on his already slim frame, we have had to encourage him to eat every meal and nutritious snacks to ensure that he doesn’t become too thin. Even though he doesn’t feel good, he has been a trouper about eating what appeals and even trying to eat the foods he normally enjoys that apparently doesn’t taste good right now, a side effect of the thrush.

At the end of May, we took him to his family doctor because we were concerned about his decreased appetite, weight loss, and suspicion that thrush was behind his symptoms. His doctor gave us a prescription for seven days of the antifungal Diflucan to treat thrush and wanted us to return in a few weeks after he returned from vacation. He also expressed concern about the lithium level shown on a recent test, which we assured him we would discuss with the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety.

After valiant attempts to contact the nurse practitioner by phone and email yielded no response, despite my insistence with her staff that we needed guidance regarding the lithium medication, we prayed and decided that we needed to do something to prevent lithium toxicity. With Alex’s doctor out of town and his nurse practitioner not communicating with us and unable to see him until the fall, we lowered his lithium dosage on our own. Thankfully, we saw no negative side effects, and his tremors seemed to decrease a bit with the medication reduction. While we were concerned about making this change without medical guidance, we believed it was the right thing to do.

This week, Alex had an appointment with his doctor, who was pleased that he had not lost any more weight and was showing signs of improvement. However, he agreed with us that the thrush is not completely gone, so he prescribed another round of Diflucan, this time for two weeks. When we explained our dilemma with the lithium dosage, he completely supported our decision, which was reassuring. In addition, he ordered a blood test to check the current lithium level that day and told us if the level was still too high, he would reduce the dosage again. We were pleased that he was taking charge and had a good plan after we felt abandoned by the nurse practitioner. Moreover, he wants to see Alex again in three months––or sooner if needed––to check his weight and overall health. Needless to say, we were happy with how well this appointment went, especially since Alex was very cooperative, feeling content and confident that we have a family doctor who genuinely cares about Alex and his health.

Later that afternoon, the doctor’s office called with the results of the lithium test (which was sooner than expected) to let us know that with the medication reduction we had made, the lithium level is now in normal range. Consequently, no further medication reductions are needed at this time. The good test results confirmed for us that we had done the right thing with God’s guidance and that Alex’s doctor is on top of things, which is important to us. While one professional had let us down, another had stepped up and made sure that Alex received proper care. Once again, God had shown us that He is always faithful and provides for our needs.

On Friday evening, we attended our first concert of the summer, a local church band playing in our downtown park plaza to raise funds and collect food for needy children in our community. Clearly feeling better than he has all summer, Alex enjoyed every minute of the concert, smiling, swaying to the music, and clapping his less shaky hands. While most of the songs were upbeat popular music, the band also played two contemporary Christian tunes. As they sang of God’s love, Alex’s expression can be best described as beatific. Sometimes I think he is closer to God than most of us, strengthened by a faith that allows him to be confident, in spite of autism, knowing that everything will be all right in the end. Watching his eyes shine and his smile spread across his face, I was reminded that, in spite of illness and autism and disappointments, God always upholds us and takes care of us, and, indeed, everything will be all right.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Sunday, June 18, 2017

Father's Day

 
[I wrote this essay about Ed and Alex's relationship last year, and everything still holds true today. Ed's unconditional love for Alex and me has kept our family strong through trials and triumphs through the years. He and I have worked together as a team to make Alex's life better, and his steady calmness keeps me grounded. Patiently listening to my concerns, observations, and research summaries, Ed always supports me and assures me that he completely trusts my judgment. His encouragement in the midst of difficult times keeps me going; he helps me become all the things I am not by nature: brave, patient, and assertive. Of the many blessings in my life, by far one of the greatest is my husband, Alex's father.]

Raising a child is no easy task, and being a parent of a child with special needs adds a whole new set of unimaginable responsibilities. After more than two dozen years of watching Ed rise to the challenges of raising our son with autism, I am amazed by the patience he has developed, the strength and calm he exhibits that make me stronger and calmer, and the unabashed pride he takes in even the seemingly smallest of Alex’s achievements. Through the good and the bad and even the horrible times, Ed’s devotion to Alex and me has remained constant and has even become stronger with time, and for that, I am truly grateful.

I’ve heard it said that the best thing a father can do for his children is to love their mother. Alex witnesses every day how much his dad loves me through his thoughtfulness, respect, and affection. Moreover, Ed also expects Alex to treat me the same way, often reminding him, “Did you tell Mommy thank you? Well, tell her!”

In addition to mentoring Alex in how to treat others, Ed has also held Alex to high expectations. While my natural tendency would be to mollycoddle Alex because autism makes simple tasks difficult for him, Ed knows that he needs to learn how to do things on his own. For example, if Alex needs to wipe his face after eating, I grab a napkin and do it for him. Ed, on the other hand, patiently gives Alex directions, telling him to pick up the napkin and instructing where he needs to wipe his face and praising him for doing a good job. Similarly, he expects Alex to pick up after himself, whereas I would just come along behind him and put his things away for him. However, I won’t always be around to wipe Alex’s face or to pick up his belongings for him, so it’s a good thing Ed teaches him to be more independent.

Some of the most precious moments of my life are when I watch the two of them together without their being aware of my presence. Looking out the kitchen window, I have seen Ed patiently teaching Alex in the backyard how to throw or kick or catch a ball, encouraging him, no matter how many times Alex had to try before he could do it himself. When he finally mastered the skill, his face lit up, and he looked for Ed’s approval; his dad’s face matched his own, beaming with happiness and pride, as did mine watching from the window.

Sometimes I eavesdrop on their conversations and find the give and take amusing. Since speaking is so difficult for Alex, we hang on his every word, even when we have to ask him to repeat or clarify what he has said. I know that Ed savors his conversations with Alex because for many years we weren’t sure if he would ever be able to say more than a few words at a time. As they chat about baseball and jazz and the stock market and other interests they share, they thoroughly enjoy each other's company and appreciate what the other has to say.

Because children never fully appreciate all their parents do for them until they have children of their own, Alex may never realize all of the things his dad does for him. From being Alex’s personal chauffeur to cutting up his food into bite-sized pieces to helping him get dressed and all the other tasks most twenty-four-year-old young men can do without their father’s help, Ed unfailing takes care of Alex and never complains.

By lovingly caring for Alex, Ed not only takes care of Alex’s daily needs, but he has also developed Alex’s faith in God. Knowing that he can always depend upon his earthly father, Alex has no doubt that he can completely trust his heavenly Father. In fact, Alex’s perception of God as being smart and funny probably comes from his attributing these qualities to his dad. However, he rates Ed as being in the high ninety percentages in these two areas, but he gives God 100% rankings in the intelligence and humor categories, noting that only God is perfect. Indeed, Alex is right about God’s wisdom because God knew exactly what kind of father Alex would need to guide him on the less traveled road of autism and gave him Ed. How blessed I am to be the wife and mother to two such extraordinary men!

“The father of godly children has cause for joy. What a pleasure to have children who are wise.” Proverbs 23:24

Sunday, June 11, 2017

What I Am Going to Do

 
In the spring, I made a life-altering decision: this would be my last year of teaching. After thirty-three years of teaching middle school English and working with fantastic fellow teachers, I knew the time had come, just as my retired teacher friends had told me I would know. Although some of my friends and colleagues were surprised by the seeming suddenness in my early retirement plans, for months, God had shown me in various ways that I had finished with this stage of my life. After prayerful consideration, heartfelt conversations with my family, and financial calculations, I knew I was ready. Consequently, I have been completely at peace with finishing my career and looking forward to the future. After making my decision official, I never had even a twinge of regret or wistfulness, which confirms that I am doing the right thing at the right time.

What surprised me, though, was the question that many people asked me once they heard of my retirement: “What are you going to do?” I suppose, since I am retiring at the earliest eligible age, this inquiry makes sense. However, my impression of retirement was that it meant no longer having to do something. Because the question was not one I had anticipated, I didn’t really have a good answer. Moreover, I realized that for the first time in my life I did not have a detailed, organized plan, and I didn’t have alternate plans in case my original plan didn’t work. Amazingly, I was fine with that, which is totally out of character for me. Consequently, I knew my decision was guided by God’s plans and not my own.

I didn’t need to think about my future plans for long because the three people who know and love me best had ideas for me immediately. My mom, a retired teacher herself, is thrilled with my decision and suggested that now I will have time to take my blog entries and edit them into a book about autism. That is a project I have mulled for a while and will definitely take into consideration. My husband noted that now I will be able to get up and make breakfast for him every day. I think he was kidding; if not, he will be sadly disappointed. However, since he wholeheartedly supports my decision, he may be the recipient of donuts from my early morning trips to the bakery. Perhaps the most pleased by my retirement plans is Alex, who excitedly told me, “We can watch Price Is Right together every morning!” Now, that’s a plan I can embrace!

Aside from the suggested writing, cooking, and watching television, I will have time on my hands to fill. Those concerned that I will be twiddling my thumbs or eating bon bons in my free hours need not worry. What am I going to do? I am going to take care of Alex, just as I have for the past twenty-five plus years. What I have realized in the past several weeks is that only a few people who know our situation well understand what taking care of Alex truly involves. Because I have chosen to focus on the positive and tried not to complain about life with autism, I may not have presented a clear picture of what being a caregiver to an adult with autism actually requires. I suspect if people only knew, they would be less likely to ask me about my retirement plans.

So, what am I going to do? This summer my plan is to help Alex get well. Currently, he has probably the worst case of candida overgrowth he has ever had with cheilitis and thrush irritating his mouth and throat. A month ago, he had a virus that affected his appetite, so we have spent the last several weeks encouraging him to eat, trying to find things that appeal to him. The thrush complicated the situation by making even his favorite foods taste bad, and his sore mouth and throat makes eating painful. Consequently, our already thin boy has lost weight, which is concerning. His primary care doctor has prescribed an antifungal medication, which seems to be helping, but from past experience, we know that candida is hard to control, and it will take time before he’s well. We have an appointment to see his doctor again in a few weeks and are hoping that he will be better by then.

In the meantime, we know that he needs proper nutrition to heal, so we constantly encourage him to eat healthy foods. Compounding this issue is that we recently discovered that his lithium level is higher than it should be, leading to tremors that make eating with a spoon or fork nearly impossible. To make matters more complicated and frustrating, the nurse practitioner who oversees his medications has been incommunicado, and despite my best efforts to contact her, we have been put in a position of making medication decisions ourselves. Fortunately, Alex is responding well to the changes we made based upon research, but we never should have been put in this position in the first place. Nonetheless, we are literally spoon feeding Alex ourselves five or six times a day, just as one would an infant. Thankfully, he is also responding well to our coaxing him to eat, and we are seeing improvements in the variety and quantity of foods he will eat.

Along with the actual acts of caregiving, I find myself engaged in constant prayers not only for Alex’s healing but also for guidance so that we know how best to help him. Once again, I find myself having to develop my faith and patience as I wait for God to reveal His plans and to heal Alex. So what am I going to do? I am going to wait on the Lord and keep myself busy taking care of my precious boy. While that may not sound like an exciting way to begin retirement, I know that is what God wants me to do and will help me to do, and I have no doubt that the rewards will be absolutely worth the effort in the end.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Sunday, June 4, 2017

Planning and Preparing

 
Yesterday I read a terrific blog entry by Phoebe Holmes on Scary Mommy entitled “Special Needs Parents Have an Extra Special Set of Parenting Skills.” [To read this post, please click here.] In this post, she describes how special needs parents are always prepared for anything, carrying tissues, assorted Band-Aids, pain relievers, and snacks. In addition, she explains that special needs parents always know where restrooms and exits are located. As she humorously suggests, “Follow us in case of fire––we’ll be the first ones out.” If things fall apart, our kids may fall apart, so we must always be overly prepared for any likely or even unlikely situations that may occur.

Fortunately, planning and organizing come easily to me. My colleagues jokingly refer to me as Pam-o-dex because I can quickly find any information someone might need. My husband has dubbed me the family E.P.A., or Executive Personal Assistant, because he and Alex rely upon me to have appointments and family outings arranged with every detail planned. This includes scheduling appointments that don’t conflict with Alex’s various therapy sessions or interfere with his beloved The Price Is Right or Jeopardy. Whenever possible I’m also careful to schedule appointments first thing in the morning or right after lunch in hopes of minimizing time spent in the waiting room.

In addition, to make sure we have any information that might come in handy, I have a red medical folder for Alex that I take with us anytime he has a doctor/dentist/optometrist appointment or goes for medical tests. In this folder, I have a copy of his legal document authorizing Ed and me to have rights as his medical power of attorney, a list of all his doctors with their addresses/phone numbers/fax numbers, a list of the medications along with the dosages he is currently taking, copies of his most recent lab tests, and dates of upcoming appointments so that I don’t accidentally schedule two things at the same time. Also, I carry his insurance cards in my wallet along with his state identification card. Clearly, the two years I spent in Girl Scouts taught me to “Be Prepared.”

Now that summer is here, we’ll be attending outdoor concerts and old-time baseball games at our local parks. This also puts my E.P.A. skills to the test, making sure that I bring everything we’ll need. Of course, we’ll need drinks and snacks that I’ll pack in our soft-sided cooler, along with napkins and wet wipes. One of the best things we ever bought was a lightweight folding cart, the beach caddy deluxe, from Bed Bath & Beyond (and I used a coupon to save 20 percent on the price). We put our portable chairs in it so that we don’t have to carry them, and the cart also holds our cooler and jackets. Alex loves to push the cart, so that makes getting to the park with all our stuff even easier. Also, I bring along Superband insect repellent bracelets that use natural substances instead of chemicals to ward off mosquitoes. (I buy ours in the garden section of Walmart for about one dollar each; Amazon also carries them.) As long as Alex has something to eat and the bugs don’t eat him, he is generally a happy camper.

Since school is out, we’ll be able to enjoy more family outings, which means that I’ll shift from lesson planning to activity planning, and I’ll trade my schoolbook bag for a snack bag. I’m looking forward to our summer adventures with my guys, who know they can trust me to have all the details arranged in advance. After all, I am the E.P.A.

“May He grant your heart’s desires and make all your plans succeed.” Psalm 20:4

Sunday, May 28, 2017

Martha's Month and Pam's Plans

 
Recently I received an offer for a free subscription to Martha Stewart Living magazine if I renewed my current subscription to another magazine by the same publisher. Since it cost me nothing, I decided to accept the offer, not even knowing how amusing I would find this magazine. On page one of every issue, readers are greeted with “Martha’s Month: Gentle reminders, helpful tips, and important dates,” a calendar with brief notes apparently highlighting what Martha plans to do each day. Clearly, she and I lead very different lives, and her agenda often makes me laugh. For example, why does she really need to “Sharpen knives and scissors” on June 19th?  Does that have anything to do with her plans to “Deadhead peonies” a week later?

I notice that she never mentions doing laundry, grocery shopping, or even spending time at the Target Dollar Spot. Perhaps she has staff to do those tasks that seem to consume so much of my time. I also suspect that her plans on the 9th to “Clean outdoor lighting fixtures” probably involve a more thorough job than my simply tapping the glass until the dead bugs fall out and then kicking them into the grass with my athletic shoes. Speaking of athletic, Martha admirably and diligently plans to exercise (weight training, yoga, cardio, and core on a rotating basis, of course) every Monday, Tuesday, Thursday, and Friday. My fitness routine is much less structured, consisting of random stair climbing to find things Alex has lost, contorted stretching to shave his face and tie his shoes, and power walking as a means to keep up with his long-legged strides. On three of those days when she is getting physical exercise, I’m getting mental exercise by working the Sudoku puzzle, knowing that Alex will carefully check my accuracy and call me on any mistakes I might make.

A good deal of Martha’s time seems to focus on gardening. She plans to plant melons, beets, spinach, lettuce, bush and pole beans, and sunflower seeds next month––all on different days. Instead, I will be planting myself on the couch to watch Jeopardy and baseball games with Alex. Martha will also weed her various gardens: rose gardens and vegetable beds. Instead, I plan to weed through autism research next month, looking for ways to make Alex better. The fruits of her labor allow her to “harvest garlic scopes” and peas; however, I harvest pens for Alex by lifting couch cushions and having them magically appear.

In other ways, perhaps Martha and I are not that different, after all. On June 2nd, she plans to “Wash and groom cats,” which I can’t think would be too much different than my washing and grooming Alex on a daily basis. On the 11th, she plans to “Pick strawberries for jam”; I just pick up strawberry jam at the grocery store. While she plans to “Stock up on summer wines” on the 7th, I plan to stock up on toilet paper around that time. On the 27th, she has earmarked time to “Feed roses,” and I feed Alex multiple times every day.

Aside from the small chores, we both have important tasks next month, as well. On the first of June, she will “Cover garden paths between beds with salt hay.” [What is “salt hay,” anyway?] On that same day, I will be teaching my last day of seventh grade English, trying to keep my students in their seats by walking the paths between their desks without the benefit of salt hay. On the fourth, she will “Judge the Cooper Hewitt Smithsonian Design Museum’s National High School Design Competition,” which sounds impressive. The next day, I will be meeting with Alex’s psychiatric nurse practitioner to go over his comprehensive metabolic profile, lipids profile, complete blood count, medication levels, and complete thyroid panel results, which also sounds fairly impressive. On the 24th, Martha will be enjoying recreation, as she plans to “Go for a horseback ride.” I, on the other hand, will be calling in Alex’s prescriptions, impatiently waiting for the ads about shingles and pneumonia shots to finish so that I can punch in the numbers to refill his medications.

Even though Martha’s life seems much more glamorous than mine with her plans to “Host friends for picnic” on the 10th and “Brunch” on the 25th, I wouldn’t trade my life for hers. She’s busy growing flowers, fruits, and vegetables in her garden while I’m busy helping my son grow and bloom into a fine young man, in spite of autism. My month may be more mundane, but I’m certain that the harvest I will reap will be much more fulfilling in the long run. Besides, I’m not big on gardening, wine, or cats. Instead, I think I’ll harvest some Bic ballpoint pens today for Alex before we plant ourselves on the couch to watch 1100 miles of auto racing with the Indianapolis 500 and the NASCAR Coca Cola 600. Now, that’s a gentle reminder, helpful tip, and an important date!

“The Lord will guide you continually, giving you water when you are dry and restoring your strength. You will be like a well-watered garden, like an ever-flowing spring.” Isaiah 58:11

Sunday, May 21, 2017

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

Sunday, May 14, 2017

If Not For You

 
“If not for you
Winter would have no spring
Couldn’t hear a robin sing
I just wouldn’t have a clue
Anyway it wouldn’t ring true
If not for you.” ~Bob Dylan, “If Not For You”

Dear Alex,
If not for you, I wouldn’t have fulfilled my lifelong dream to be a mom. Thanks for letting me be yours.

If not for you, I wouldn’t be a NASCAR fan. Thanks for sharing one of your favorite sports with me so that I could enjoy it as much as you do.

If not for you, I wouldn’t have learned to wait patiently. Thanks for teaching me that good things, indeed, come to those who wait.

If not for you, I wouldn’t know the ABC Chicago meteorologists on a first-name basis. Thanks for making me as enthusiastic as you are about watching the weather reports on television.

If not for you, I wouldn’t be assertive when I need to be. Thanks for giving me reasons to stand up for what is right, making sure you get what you need in life.

If not for you, I wouldn’t know who, when, or where the Chicago Cubs are playing on a daily basis. Thanks for including me in one of your favorite pastimes so that we can cheer on our team together.

If not for you, I wouldn’t have had met the wonderful people who comprise your support team. Thanks for allowing your friends to be my friends, too.

If not for you, I wouldn’t truly appreciate the value of numbers and patterns in time, dates, addresses, and pi. Thanks for helping me overcome my dislike of math, something you adore.

If not for you, I wouldn’t have seen an endearing side in your daddy as he speaks sweetly and gently to you, makes sound effects to entertain you, and talks about you with such loving pride. Thanks for showing me what makes me love him best: his love for you.

If not for you, I wouldn’t pay much attention to the stock market or gas prices. Thanks for keeping me apprised of the daily trends you find so fascinating and making sure that I always go to the gas station with the lowest prices and keeping me honest by having me give you my receipts.

If not for you, I wouldn’t have known the value of a smile. Thank you for warming people’s hearts with your sweet smile that endears you to those who see the pure heart behind those cute dimples and twinkling eyes.

If not for you, I wouldn’t have become familiar with the expressions you have created in your clever mind. Thanks to you, I know what “bad imagine clothes” and “scroungy voices” are and why they must be avoided at all costs.

If not for you, I wouldn’t have realized that the only thing better than reading a good book is to read it aloud to someone you love. Thanks for appreciating books as much as I do and for indulging me in reading to you when you were able to read on your own.

If not for you, I wouldn’t have comprehended how much trivia I have stored in my brain in my lifetime. Thanks for insisting that we watch Jeopardy every afternoon so that we can beat most contestants by combining our acquired knowledge.

If not for you, I wouldn’t know the depth of God’s love, grace, and faithfulness. Thanks for your steadfast faith that reminds me to trust that everything has a reason and that God will always take care of us. I have no doubt that He gave you to me to teach me the most important lessons I needed to learn in life, which makes you my greatest blessing.

Love always,
Mommy

“Children are a gift from the Lord; they are a reward from Him.” Psalm 127:3

Sunday, May 7, 2017

Learning Continues

 
When Alex was little, the theory regarding developmental windows of opportunity caused needless anxiety for me, fearing that we only had a short time for him to learn needed skills. Promoting early childhood learning and early intervention for children with developmental delays, this windows concept stresses that optimal learning takes place between birth and the age of four. As I tried to teach preschooler Alex everything I thought he needed to know, I kept picturing that dreaded window slamming shut as I was running out of time.

Later research discovered the concept of brain plasticity in which the brain can modify its structure and function after bodily or environmental changes, such as brain trauma or disease. In fact, the brain can be remarkably adaptable, allowing further learning and modified behavior at any age, even after that learning window has supposedly long closed. As a teacher of adolescents, I know learning opportunities exist after age four because I see growth and development every school year in the students I teach. Moreover, I see Alex continue to develop his skills over time, even though he lags behind his peers due to autism.

A few days ago, a fascinating article regarding the continued ability to learn appeared in an online article in UCR Today. [To read this article, please click here.]  In “You’re Never Too Old to Learn That,” Mojgan Sherkat describes the research of University of California Riverside psychology professor Rachel Wu, whose paper “A Novel Theoretical Life Course Framework for Triggering Cognitive Development Across the Life Span” was recently published in the journal Human Development.

Professor Wu asserts that people develop habits and learning strategies throughout their lives that either encourage or discourage cognitive development. While infants and children learn many skills through broad learning experiences, adults learn to specialize their learning for their careers, becoming expert at certain skills. This specialized learning leads to cognitive decline, first in unfamiliar settings and later in both unfamiliar and familiar areas. To prevent the cognitive decline with age, people should engage in “broad learning experiences,” continuing to learn new skills.

Moreover, she contrasts the differences between broad learning, usually seen in children, and specialized learning, usually seen in adults, in six ways. For example, broad learning focuses upon learning new patterns and skills outside the comfort zone, whereas specialized learning shows preference for familiar routines. In addition, in broad learning, teachers and mentors guide the learners; in specialized learning, learners do not have access to experts who can help them. Also, while broad learning holds the belief that abilities develop with effort, specialized learning holds the belief that inborn talent is more important than effort. In another contrast, during broad learning, mistakes and failure are allowed as part of the learning process, but these same mistakes can have serious consequences in specialized learning, such as being fired from a job for incompetence. Yet another difference between the two types of learning is the serious commitment to learning found in broad learning versus little commitment to learning found in specialized learning, often due to time constraints or giving up when the task becomes difficult. Finally, broad learning, as its name suggest, involves learning multiple skills at the same time; specialized learning involves learning one––if any––skill at a time.

Consequently, to keep the mind sharp, adults must return to the learning styles they engaged in as children. As Professor Wu explains, “What I want adults to take away from this study is that we CAN learn many new skills at any age. It just takes time and dedication.” Thus, the proverbial “old dog” apparently can be taught “new tricks” with the proper amount of effort and willingness to learn.

Often, people will ask me what Alex is doing these days, now that he is a twenty-five-year-old young man living with autism. Because he cannot yet function in a job setting and because we have not found a day program appropriate for his needs, he is at home with us. However, he is not just sitting around; home schooling continues for Alex as we give him as many opportunities to learn as possible. Knowing that the window of opportunity to learn has not closed, we provide him with guidance, encouragement, and the tools he needs to learn. He spends his days reading, researching online, engaged in conversation with us, and getting out in the community by going to restaurants, concerts, sporting events, and other activities he enjoys. As career teachers and parents, Ed and I hope to continue to develop this broad learning so critical to Alex’s continued progress.

Last week, we were able to see how Alex learns through a series of unusual events. Apparently, he had some virus (as I later discovered his music therapist and one of my colleagues also had experienced last week) that caused him to have no appetite. Since Alex has always been a good eater, this caught us totally by surprise, especially when he wouldn’t even eat his favorite foods, such as shrimp, white chili, and meatloaf. Ever the researcher, Alex delved into his various huge medical books and Internet medical websites, trying to diagnose his ailment, just as many of us do when we have odd symptoms.

Although we tried to reassure him that he had nothing serious and encouraged him to eat a few things that appealed to him, such as applesauce and Jello, he decided to begin a new search on mortality. Since Alex has never had to deal with the death of anyone close to him, this may have been his first time exploring the concept of death. Along with recently having discussed the meaning of Easter and Jesus’ death and resurrection, Alex decided to study the abstract concepts of life, death, and immortality. However, we, along with his therapist, had to reassure him that he was not going to die from a brief loss of appetite. Nonetheless, our conversations with him revealed that he continues to develop a depth of understanding about the world around him, even those difficult to comprehend issues of life, death, and eternal life promised by the sacrifice of Christ. Clearly, Alex continues to develop his cognitive skills, and we eagerly anticipate all that he will learn and share with us in that amazing mind God has given him.

“That is what the Scriptures mean when they say, ‘No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love Him.’” I Corinthians 2:9

Sunday, April 30, 2017

Truly Aware

 
Today ends another Autism Awareness Month. As many autism parents point out, every month, every day, and every minute (all 525,600 of them in a year, as Alex reminds me) mean autism awareness for our families. Beyond the blue lights and puzzle piece ribbons is the reality that more and more children are being diagnosed with autism, and the mainstream medical community seems to offer no real reason why. Moreover, the educational system and therapeutic support systems cannot handle the influx of all these kids with autism. As they age out of the educational system, programs for adults with disabilities cannot handle them, either, and many are not getting the services they need. That is true autism awareness.

Like many parents of adults with autism, we have our beloved son at home with us, requiring 24/7 care. He needs structure and routines to keep his anxiety from escalating. In fact, we keep a schedule posted on our refrigerator door for him to consult anytime he is concerned about what will happen next, even though he knows that we honor his precious timetable.

9:00 A.M.—Get up, take pills with juice

10:30 A.M.––Eat breakfast

11:00 A.M.––Brush teeth

11:30 A.M.––Eat lunch

12:00 P.M.––Change clothes

4:30 P.M.––Decide what’s for dinner

5:00 P.M.––Eat dinner

6:00 P.M.––Take vitamins; bath time

7:30 P.M.––Have dessert/snack

10:00 P.M.––Take pills, brush teeth, bedtime

Just to clarify, Alex needs help with every single item on this schedule. He takes a dozen pills three times a day and needs us to administer them to him, even though he can thankfully swallow pills. Because his hands shake from one of the medications to keep his anxiety under control, and because he has poor fine motor skills, he cannot pour his own drinks or prepare his own food. He also lacks motor planning skills, which means he needs help with brushing his teeth and changing his clothes. For this reason, I think of our family life in half-hour increments, knowing that Alex will probably need Ed or me to help him with something in the next thirty minutes. In addition, he has other tasks he assigns me at specific times, such as working the newspaper Sudoku puzzle at 1:30 and watching Jeopardy with him at 3:30. Also, his afternoons are scheduled with therapy sessions that I coordinate for him. Although he has become more patient over time, he values punctuality and can become unnerved if his schedule doesn’t go as planned.

Mind you, we are extraordinarily lucky parents in the autism lottery. We have a child who can verbalize––albeit awkwardly––what he wants and needs; only about half of people with autism are verbal. Unlike half of people with autism, Alex does not wander away from safe places so that we don’t have to worry that he’ll drown in a pond or get hit by a car in traffic or a train on railroad tracks. We are also fortunate that he can use the toilet independently and does not have chronic diarrhea or constipation, as many with autism do. Moreover, he doesn’t smear his feces as many do; he even flushes the toilet and puts down the seat, so I count my blessings daily on that score, especially since he was thirteen before he was potty trained. Also, we are grateful that Alex has overcome the sleep issues that plague many with autism so that we can all enjoy a good night’s rest that many families cannot.

God has also blessed us with a tremendous support team of professionals who genuinely care about our family and have helped Alex make good progress in his skills. Sadly, many families do not have these essential resources to help them. After dealing with extreme anxiety that fueled aggression, proper medication and therapy have allowed Alex to cope with his emotions so that he can enjoy life and so that we can have a peaceful family life. We know just how precious this existence is.

While we truly appreciate the progress Alex has made, we know that many families face struggles every single day because of autism, and we can empathize with the frustration they feel. I know how overwhelmed I can feel trying to meet Alex’s daily needs, and I can imagine that those with children who have even greater needs must be even more frazzled. We need to move beyond autism awareness and autism acceptance to autism action. Something needs to be done to help families cope with the daily burdens of autism: more useful research, more funding, more resources, more support. In the meantime, I continue to pray for a cure for autism so that Alex and others with autism will be healed completely and their families who love them can enjoy more abundant lives, freed from the obstacles autism presents. When the need for Autism Awareness Month disappears––now, that will be truly something to celebrate!

“O Lord, if You heal me, I will be truly healed; if You save me, I will be truly saved. My praises are for You alone!” Jeremiah 17:14

Sunday, April 23, 2017

The Fidget Fad

 
Trying to teach middle school students the last weeks of school is always a challenge, even for veteran teachers like me. However, this spring a popular gadget is interfering with the learning process, despite its inflated claims of being a panacea for students with special needs. Advertised as the “must have toy for 2017,” fidget spinners are appearing in classrooms, much to the dismay of many teachers. While these handheld plastic flat triads with three bearings that can be spun supposedly help students with ADD, ADHD, OCD, autism, and anxiety, they are creating anxiety for many of the teachers whose students are bringing them to class.

Despite no studies showing their effectiveness, these fidget toys claim to relieve and reduce stress and anxiety, increase focus, build concentration, and help with boredom and restless hands. Some companies even market the fidget spinners as “educational toys.” The fidget spinners are also described as “addictive,” the one adjective I will agree is true. The low cost of these spinners––anywhere from $1-20, with most priced around $5––makes them affordable for nearly all students. The fidget spinner takes the place of the typical spring appearance of rubber bands to shoot, paper airplanes to throw, or the ever-popular erasers to toss. However, students claim they need these spinners to focus and be calm. Either they bought the hype or think that their teachers are that gullible.

To summarize, a fidget spinner is an attractive nuisance. If one kid has a spinner, everyone in the class wants to see it, touch it, spin it; they are mesmerized by these gadgets. They want to pass them around so that everyone can enjoy all the benefits of these miraculous inventions. Certainly, this does help them with boredom, as the ads claim, yet their focus and concentration are upon a stupid piece of plastic with metal bearings and not on what they are supposed to be learning in class.

Moreover, the sound of the spinning bearings poses a distraction. One ad claims that the low humming sound actually “helps promote a sense of calm.” As the teacher, that humming sound makes me want to take that spinner and throw it out the window, so it clearly fails to calm me. I suppose these fidget toys have become necessary because students cannot bring their phones or video games to class, and they simply do not know what to do with their hands when they aren’t holding an electronic device to entertain themselves.
Yet another disruptive fidget toy appearing in classes this year with similar claims of positive effects is the fidget block. Ranging in cost from $5-10, these cubes have various buttons and knobs on each of the six sides to provide sensory stimulation. While some of these fidget blocks claim to be silent, others make the same annoying sound made by the clicking of a retractable ink pen. Of course, one of the problems with the fidget spinners or blocks is the potential for dropping the item, which proves distracting for the entire class. However, these fidgets are slightly better than stress balls that roll down the aisles.

As an autism mom, I understand that some children do need sensory toys to help them focus and/or remain calm. However, as a teacher, I see many students jumping on the sensory issues bandwagon who don’t really need a fidget toy but just want to have something to play with in class. Because teachers must protect the privacy of our special needs students who are mainstreamed, regulating the presence of sensory toys becomes problematic. Consequently, I’ve had to accept the fidget toys so long as they remain in the owner’s hands and are used properly. However, when they start sharing their spinners with their friends and or taking them apart, they become mine until class is over.

If, indeed, students truly need to have sensory toys, I would recommend the following alternatives: pool splash balls, squeeze blocks that look like Legos, and desk buddy rulers. The advantage that all three of these items have is that they do not roll, would not inflict injury if tossed across the room, are silent, cannot be taken apart into pieces, are inexpensive, and have actual sensory value to students with sensory needs. The splash balls intended for playing in swimming pools are made of soft material lightly stuffed with polyester filling. They are lightweight, smooth to the touch, squeezable, and unlike stress balls, cannot roll easily. Squeeze blocks offer the same benefits. Desk Buddy rulers offer the various tactile stimulation of a fidget cube without the noise or likelihood of falling off the desk and rolling on the floor. If parents are considering buying sensory stimulation toys for their children with autism or ADD/ADHD, I would recommend any of these three items instead of the fidget spinners and cubes.




While students who actually have stress, anxiety, and focusing issues should have their needs met, those claiming to have these problems should not be playing with toys that distract them, their classmates, and their teachers. Good alternatives exist for students who truly need sensory stimulation, and parents and teachers should seek these items instead. Fortunately, teen fads rarely last long, and spinners will likely spin out of favor just as quickly as they arrived in classrooms this spring. After dealing with students doing the "dab" dance arm movements in the fall, we teachers know that annoying fads will eventually go away and be replaced by something equally annoying. In the meantime, we secretly hope that those parents who bought their children fidget spinners and cubes will be treated to a summer of humming and clicking and dropping them so that they can understand why we found these toys so annoying in our classrooms this spring.

“Rejoice in our confident hope. Be patient in trouble, and keep on praying.” Romans 12:12

Sunday, April 16, 2017

Grace over Guilt

 
Most mothers, especially those who have special needs children, would admit one of the strongest and most difficult feelings to handle is guilt. Often we feel guilty for what we may have done that might have caused our children to have issues. At other times, we feel guilty for our perceived sins of omission, failing to do something that might have made a difference in our children’s lives. The saying goes, “Hindsight is 20/20,” and looking back on our lives, we recognize the things we may have done differently had we known what we know now. On the other hand, if we truly believe that God is guiding our lives, we realize that every event in life is necessary to get us where we need to be. That consideration relieves some of the pressure we moms face, knowing that everything in life, indeed, has a purpose.

To be honest, in my OCD fashion, I have scrutinized every possible thing that could have led to Alex having autism. If I had done things differently, might he have escaped this condition that makes his life more difficult than it needs to be? I remember a colleague of my obstetrician asking me point blank why I was still working midway through a pregnancy considered high risk. When I explained that my doctor had assured me that I could safely work up until the day I gave birth, as long as I felt well enough, he scoffed at me. Then he turned to Ed, wagged his finger, and said, “If she were my wife, she wouldn’t be working.” Perhaps if I hadn’t dismissed his opinion as old-fashioned, might Alex have not developed autism?

“Neither this [blind] man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9:3

In my last trimester, I caught the flu and had to be hospitalized because the virus made my blood platelet count drop to dangerously low levels. To treat this condition, the internist gave me gamma immune IVs, which I later discovered contained mercury as a preservative. Had I stayed home to avoid exposure to germs and not gotten sick, might Alex not have been exposed to the virus and mercury, which we later discovered had poisoned him?

“So let us come boldly to the throne of our gracious God. There we will receive His mercy, and we will find grace to help us when we need it most.” Hebrews 4:16

As a conformist who follows rules and guidelines, I implicitly trusted Alex’s pediatricians and faithfully took him to receive all of his vaccinations on time, even though he had been exposed to prednisone in utero that I was given to treat an autoimmune condition. When they assured me that he would be fine, I believed them, and gave him Tylenol as they recommended, never questioning the process. Had I done more research about vaccines and their toxic ingredients and known about how Tylenol hinders the body’s natural detoxification pathways, might I have spared him neurological damage?

“Each time He said, ‘My grace is all you need. My power works best in weakness.’ So now I am glad to boast about my weakness, so that the power of Christ can work through me.” II Corinthians 12:9

When I suspected that Alex did, indeed, have autism, I tried to present my concerns when he was three years old to his pediatrician, who basically dismissed me as a fretting first-time mother. Although I pointed out his language delays and resistance to toilet training, he assured me that Alex couldn’t be autistic because “He’s too smart.” Moreover, he was certain that Alex’s delays in speech and toileting were simply because he was a boy. Trusting his professional judgment, we waited another year before insisting that Alex be tested for developmental delays. Had I instead trusted my mother’s instinct and ignored the pediatrician’s opinion, would a year earlier of intervention have made a difference in the long run?

“In His kindness God called you to share in His eternal glory by means of Christ Jesus. So after you have suffered a little while, He will restore, support, and strengthen you, and He will place you on a firm foundation.” I Peter 5:10

The bottom line is that I have made multiple mistakes as Alex’s mom. However, many of the choices I made were based upon trusting professionals whom I thought knew better than I did. Moreover, my intentions have been focused upon doing what I thought was in Alex’s best interests. When I allow my mind to wander into the “What if?” scenarios, I realize that the guilt I feel is unwarranted and does nothing to change things. Furthermore, I’m certain that God has forgiven any mistakes I have made in raising Alex. Instead of carrying around guilt, I must accept the gift of grace and be thankful.

“God saved you by His grace when you believed. And you can’t take credit for this; it is a gift from God.” Ephesians 2:8

As we celebrate Easter and the resurrection of Jesus, we know that through God’s sacrifice of His son, all of our sins are forgiven. To hold onto feelings of guilt diminishes the value of that ultimate parental sacrifice. Grace is not something to be earned but something to be appreciated because it’s given in spite of our mistakes. Instead of looking back on what I think I should have done differently, I need to look back on all that God has done to make Alex better and how our faith, hope, and love have been strengthened, trusting that He will guide us to the future glory He has planned.

 “Therefore, since we have been made right in God’s sight by faith, we have peace with God because of what Jesus Christ our Lord has done for us. Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory.” Romans 5:1-2

Sunday, April 9, 2017

Search: Alex and Google

 
In a previous blog entry, I explained that one of the best ways to find out what Alex is thinking is to check his Google search history. Because his speech is still delayed, he doesn’t always verbalize what is on his mind. In fact, if I ask him what he’s thinking, he’ll often blurt, “Nothing!” to avoid having to explain his thoughts. Truthfully, most of the time, I’m not too surprised by the list that appears in his search history, and I’m relieved to discover that he’s not searching topics that would make me worry about him. Last night, I took a quick peek at his most recent searches just to confirm that he's using his iPad and Internet privileges appropriately and was pleased to discover that he is. Moreover, I found some of his current topics of interest pretty interesting.

For example, one of Alex’s favorite pastimes is eating, especially at restaurants, which his search history confirmed. Alex had searched Google for two nearby restaurants, Culver’s, which is one of his favorites, and The Port, a drive-in restaurant open only in the summer. He had also searched the Panda Express menu, probably curious about what they serve and what he can eat there on his gluten-free and casein-free diet; a Panda Express is currently under construction in our town. Besides these restaurant searches, he also had typed in “how to stop being on a gluten-free diet.” I guess he hopes that someday he won’t have to avoid glutens.

Another common theme in Alex’s searches is celebrities. To illustrate, he looked up the birthdays of former Chicago Cubs baseball player Sammy Sosa and singer Celine Dion. Alex includes Sammy Sosa in his prayers every night, and I’m guessing he was curious about Celine Dion after seeing her on The Voice television show. He also searched for information about his favorite college basketball player, Valparaiso University’s star player, Alec Peters. In addition, he wanted to know how much country singer Miranda Lambert and the former host of the game show The Price Is Right, Bob Barker, weigh. Because Alex needs to quantify people by numbers, he likes to know their birthdays, ages, heights, and weights. However, he also knows that asking this information can be considered rude, but Google can tell him this information without making him seem nosy.

One of his search topics could seem cryptic, but I’m fairly certain that it was also related to his interest in celebrities––dead or alive. He will frequently ask about certain famous people and want to know if they’re still living. He finds the musical group the Beatles especially interesting since two of the Fab Four are dead. If he hears something about one of them, he’ll invariable ask, “Is he one of the dead Beatles or one of the alive ones?”

Yet another one of Alex’s interests––statistics––appears in his search history. For instance, he was looking up long words, specifically those with ten letters and sixteen letters. Combining his love of mathematics with his love of meteorology, he had Googled “13 most likely states to have tornadoes.” Also, he studies gas prices religiously, so I wasn’t surprised to see that he was checking out Gas Buddy, which provides current gas prices at various stations in the area.

However, Alex is the ultimate Gas Buddy, whose eagle eyes seek out gas prices as we drive along and compare and contrast the different prices at different places. He’ll excitedly announce from the back seat, “The gas prices at Speedway in Chesterton are four cents higher than the gas prices at Family Express in Valparaiso!” We find that his longest and most enthusiastic spoken sentences typically revolve around gas prices. This is a far cry from when he was younger and got upset by gas prices, throwing things from the back seat or kicking our seats if he wasn’t pleased. In fact, we had figured out how to get around town without ever passing a gas station just to avoid the wrath of Angry Gas Buddy in the back seat. Thankfully, that’s another phase that has disappeared.

Perhaps because Alex can now verbalize better what he wants to communicate, he doesn’t get upset about gas prices and other concerns. Apparently, he finds language acquisition as interesting as I do. Specifically, he had searched the following two questions: “When did language start?” and “When did you [meaning himself because he still confuses his pronouns] start having language?” Alex’s development of language has been interesting because he mastered reading and then writing before speaking. Maybe as his speech has been developing (especially with regard to commenting on gas prices), he has been more curious about his early language skills.

In reviewing Alex’s search history, probably the most curious topic I found was helicopter prices. Hopefully, when he discovered how expensive they are, he realized that he can’t afford to buy one. However, the most thought-provoking question in his search history was “How long is a long time?” He may have wondered about that because we frequently tell him that something happened a long time ago when he asks about some historical event. For his mind that needs to quantify an amount, he was likely seeking some specific range of years. Unfortunately, Google’s answers could not give him the precise details he wanted. Maybe he could put together those two topics, as in, it will be a long time before Alex can save up enough money to buy a helicopter.

While we are fortunate that Alex, unlike many people with autism, can speak and tell us what he is thinking, we are even more fortunate that we can get a glimpse of his very active mind by monitoring his online activity. Although he may claim that he has nothing on his mind, his Google search history proves otherwise, reassuring us that he lives up to his childhood nickname, Mr. Curious, and still loves to learn something new every day.

“So I set out to learn everything from wisdom to madness and folly. But I learned that pursuing all this is like chasing the wind.” Ecclesiastes 1:17