Sunday, June 26, 2016

Acceptance vs. Assurance

acceptance––willingness to tolerate a difficult or unpleasant situation

assurance––a positive declaration intended to give confidence; a promise

This week I read an upbeat article in a popular magazine about a family raising a daughter with autism that offered good insights into life with autism. I found myself agreeing with most of what the parents were quoted as saying until the last paragraph. The author states that the parents “grow weary of what they believe are common misconceptions surrounding autism, including the role of vaccines, which they don’t believe are the culprit.” If, indeed, the parents truly feel this way, they seem to be accepting a popular stance the media presents on a controversial issue. However, as parents we must not grow weary and must continue to seek all potential causes of autism if we have any hope of helping our kids get better.

Similarly, I have read essays written by adults who say they have autism and by parents of children with autism asserting that trying to cure children of autism is wrong and that parents should accept their children as they are. Some will support this belief by stating, “This is how God made them,” suggesting that trying to help the children with autism is going against God’s will. Isn’t the point of life trying to become the best people we can be? I believe that our role as parents is to help our children develop their potential so that they can live a fulfilled life, instead of tolerating a life that is more difficult than it needs to be.

Perhaps some parents have not endured the struggles we have gone through with autism and simply don’t know why acceptance is not acceptable. Having dealt with a child whose extreme anxiety––which often accompanies autism––led him to become a danger to himself and others with his aggressive panic attacks, we know that parents must constantly seek answers to the cause of autism and search for the best treatment methods. In our situation we needed to make major changes because of Alex’s fluctuating hormone levels in his teens, bouts of candida yeast overgrowth in his digestive system that agitated him, and a need to switch SSRI medications to address his OCD when Prozac stopped working for him. Instead of just believing that God made Alex this way and tolerating a terrible situation, we believed that God would help us weather the storms and show us what we needed to do to help Alex overcome these obstacles. We chose assurance­––God’s promise of faithfulness––over acceptance, and God fulfilled his promise by leading us to the professionals who knew how to help us make Alex better.

This week we took Alex to two community events in our local downtown park: a movie and a concert, both of which he thoroughly enjoyed. A few years ago, we would have never dreamed that he could have sat happily and calmly in the midst of crowds and activity for two hours. Even though we believed he would get better through therapy and treatment, his progress has surpassed our expectations and allowed God to show his goodness to us. In addition, we have begun to wean him off one of his medications for anxiety under the direction of his psychiatric nurse practitioner because he is doing so well. While we had some concerns about how he would react to this change, thankfully, he has adapted amazingly well, showing no negative side effects to the lower doses of this medication.

As we listened to the music at the concert in the park, an image from the lyrics to one of the songs resonated with me. Although I can’t remember the exact words, the gist was that we are all waiting to be diamonds. Curious about how diamonds are actually made, I found an article online at Live Science that summarized the process: “bury carbon dioxide 100 miles into Earth, heat to 2200 degrees Fahrenheit, squeeze under pressure of 725,000 pounds per square inch, and quickly rush toward Earth’s surface to cool.” Essentially, what’s needed to create something beautiful and strong is to take something common and ordinary and subject it to extreme heat and pressure. Certainly, autism has created figurative heat and pressure that have tested us and shaped Alex, who is well on his way to becoming a diamond. As we watch him try to convey an idea through words despite his difficulties in generating speech or to complete a simple task with hands that have not yet mastered fine motor skills, we are amazed at the patience and tenacity he has developed over the years. He never gives up, knowing he will eventually complete what he has started, reminding and encouraging us to never give up, knowing with complete assurance that God will complete what He has started through His good works in Alex.

“Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.” Hebrews 11:1

Sunday, June 19, 2016

Alex's Dad

Raising a child is no easy task, and being a parent of a child with special needs adds a whole new set of unimagined 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 12, 2016

Roll with the Changes

“Keep on rollin’; keep on rollin’. Oh, you got to learn to roll with the changes.”––"Roll with the Changes" by Kevin Cronin of REO Speedwagon

Commonly, people with autism have strong preferences for sameness and routines, which makes them resistant to change. For example, Alex insists on having a bath every night at exactly 6:00, and rarely can we persuade him to move this daily event to another time unless a much better alternative event convinces him to alter his sacred schedule. However, we have noted that over time, he has become increasingly flexible and less anxious about changes in his routine. Indeed, he is learning "to roll with the changes."

This week was my first week of summer vacation from teaching, which could have thrown Alex for a loop since he’s used to just being with his dad in the mornings while I’m at work. As it turned out, I was gone for parts of four mornings with two meetings and two breakfast outings with friends. This probably helped Alex ease into the transition of our summer schedule. Also, I try to help him deal with any anxiety by always leaving him a note telling him where I’ve gone and when I will return, which seems to comfort any worries he may have about why I’m gone and when I will be home. We’ll see how he responds next week when I’ll be home because my morning schedule isn’t as busy.

On Monday, Alex had his routine six-month appointment with the psychiatric nurse practitioner who prescribes his medications for anxiety. We were pleased to discover that she deemed the results of all of his blood tests “perfect” because they indicate that he is in excellent health and that the medications are not having any negative side effects. In addition, we were delighted that his behavior was fantastic during the appointment, calm and pleasant while he answered all of her questions. Of course, Alex was pleased that her schedule was running right on time so that he didn’t have to sit in the waiting room.

After we discussed his progress with her, she raised the issue I knew was coming––reducing his medications. As she pointed out, we can say that because things are going well, we shouldn’t rock the boat and should keep the medications the same. On the other hand, she noted, because things are going well, this may be a good time to reduce his medications. In a twist of roles, Ed, who is usually more receptive to change than I am, commented that we probably shouldn’t make any changes because Alex is doing well. Although I completely understand his logic, my mother’s instinct believes that we need to see if Alex can cope with less medication, and so with some trepidation we will try weaning him off one of his medications this summer and pray that we are doing the right thing.

On Tuesday, Alex met with his behavioral therapist for his regular weekly session, which went very well. Although she often doesn’t arrive at the scheduled time because of her busy schedule that requires travel through heavy traffic between two counties, she was ten minutes early on Tuesday. While that could have thrown Alex for a loop, he adjusted nicely to her early arrival and had a great session with her. Similarly, he showed flexibility on Wednesday when his peer companion who spends every Wednesday afternoon with him had to cancel at the last minute because she wasn’t feeling well. With two changes to his beloved routine in two days––one minor and one major––he still managed to be upbeat and calm.

On Thursday, Alex had his weekly session with his music therapist who is always punctual, faithfully arriving at his scheduled time every week. This week, he arrived early, and Alex again dealt with this change very well. In fact, his music therapist described the session as “fantastic” and noted that this was the second week in a row where Alex had done especially well with him. Of course, we were pleased by this positive report. In addition, he handled nicely a change in our dinner routine because Ed and my dad were attending a dinner reception for VU basketball season ticket holders, so Alex, my mom, and I went out to a restaurant for dinner. Alex seemed to enjoy himself thoroughly, and we remarked how much we enjoy taking him out to dinner because he behaves so well.

Friday threw Alex another curve ball, however, when his behavioral therapist had to cancel our planned recreational therapy session due to a family emergency. Even though Alex had been looking forward to going out to lunch at Subway with her and me, he didn’t seem terribly upset that our lunch plans had been altered. Later that evening, we discovered that our central air conditioning had broken, yet Alex continued his calm demeanor. As the temperatures rose into the 90’s yesterday, he never complained about the heat and only seemed amused to watch the thermometer rise in his upstairs bedroom, commenting that the it had never been that hot before in his entire life.

Because we have to wait until next week for the air conditioner to be repaired and because our bedrooms upstairs were too warm, even with windows opened and fans turned on, we decided to sleep in the basement, where it was much cooler. As we set up the pull-out bed in the couch for Ed and me and put Alex in basement bedroom twin bed, he seemed to view the experience as a grand adventure. Although I was concerned about how he would sleep in a different bed, he once again showed his flexibility, sleeping soundly in a new spot.

While Alex, like many people––including me––prefers the comfort of familiar routines, he is learning to accept and perhaps even embrace changes that occur, even when he doesn’t have time to prepare for them. This increased flexibility makes our lives easier because we don’t have to worry about his anxiety escalating. Moreover, he is realizing that life doesn’t always go as planned, and learning to roll with the changes will make his life more content. This week with all its unexpected alterations taught Alex valuable lessons and reminded us just how far he has come, and we continue to be thankful for the progress he has made.

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

Sunday, June 5, 2016

Summer Safety

Although summer doesn’t officially begin until later this month (June 20th at 7:34 P.M. Central Daylight Time exactly, as Alex would add), for many of us summer starts as soon as the school year ends. After finishing up teaching my seventh grade English classes on Friday, essentially my summer has begun, other than having to spend tomorrow morning finishing up paperwork, submitting grades, and completing end-of-the-year tasks. Since Ed completed his spring semester last month, Alex has been eagerly awaiting my school year to end because summer officially arrives when both of us are home to spend time with Alex as a family.

In anticipation of this first week of our summer, Alex has been planning what he’d like to do with this special family time that we are blessed to have because we are teachers. Usually, he makes a specific list of places to go and things to do. This year, however, he seems more spontaneous and open to suggestions about summer activities. In fact, when asked what he’d like to do this summer, he responded, “Put more miles on Daddy’s car.” He doesn’t care where we go or what we do, just so long as we go lots of places and make that odometer move forward. That flexibility shows us progress on his part.

While summer brings good weather, vacations, family gatherings, and a less structured schedule––all of which most people treasure––summer also brings greater incidences of wandering in people with autism for all of those reasons. According to statistics provided by the National Autism Association, 49% of children and adults with autism wander away from places of safety and put themselves in dangerous situations, often fleeing toward bodies of water or swimming pools, busy roads, or train tracks. Every year many of these people with autism die from drowning or being hit by cars or trains.

While we are fortunate that Alex does not seem to be one of the wanderers, we still watch him like a hawk and have put safety precautions in place, such as having locks he cannot open and having him wear a medical identification bracelet in case he would be separated from us in a crowded place. Even though he can say his name, our names, his address and phone number, as well as my parents’ names, address, and phone number, his poor articulation skills and likelihood to panic if he were lost would make understanding him difficult. Hence, we have him wear the bracelet with key identifying information that he may not be able to tell in a crisis.

Why do people with autism wander and put themselves in danger? The National Autism Association offers potential reasons.

In addition, the National Autism Association offers many helpful tips to keep children with autism safe. [To view their webpage with safety guidelines, please click here.] Specifically, they focus upon prevention, education, and response. To prevent wandering they recommend the following:

––home safeguards, such as locks and fences to keep children from wandering from home;

––identification bracelets or tags;

––community awareness to alert those who might encounter the child and to teach how to interact with them;

––and hyper vigilance to make sure the child is closely supervised, especially in unfamiliar situations.

For education, the NAA recommends identifying triggers that may cause a child to elope, such as loud noises, and teaching them ways to cope with stresses other than running away. In addition they recommend providing swimming lessons to keep them safe around water and using social stories to teach them about safety.

If a person with autism wanders, the NAA recommends immediate response, including calling 911 right away and searching dangerous areas first, including water, railroad tracks, and traffic. Since people with autism are drawn to these places that pose imminent danger to them, family and first responders should always search these areas immediately. In addition, the NAA offers the following essential and helpful guidelines for law enforcement officers when dealing with a case of a person with autism who has wandered.

Although summertime usually brings relaxation for most families, for families with autism, summertime means increased vigilance to keep our children safe. Thanks to the efforts of the National Autism Association, helpful tips for keeping our kids from wandering and for dealing with the crisis of wandering remind us never to let down our guard when it comes to protecting them from harm. Hopefully, awareness of this crucial issue can prevent more tragedies from happening when people with autism wander. Of course, as parents, we also pray that God will always keep our children safe.

“The Lord is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety.” Psalm 18:2