The Return of Good Year Alex

 

When I started writing One Autism Mom’s Notes over three years ago in June 2010, Alex had reached a stage where he was the best he had ever been cognitively, socially, and behaviorally. After years of various interventions, including speech, occupational, and biomedical therapies, he had made significant gains that made our lives the most normal they had been in years. For example, we could take him to restaurants and shopping and do many things as a family that we couldn’t do previously due to his unpredictable behavior. These improvements meant even more to us because we had gone through a very challenging stage a little over a year before that in which he would have aggressive and destructive meltdowns that would arise suddenly for seemingly meaningless reasons. After months of walking on eggshells around him, we were delighted to welcome the return of our sweet and docile son and felt blessed that he was so much better.

In fact, one of the reasons I started writing this blog was that not only did I have more time to write about our family’s life with autism because I didn’t have to constantly monitor Alex, but also I wanted to share hope with other families to let them know that life with a child who has autism does get better. We savored this time, knowing how far we had come, celebrating Alex’s finally mastering skills other parents may take for granted, such as learning how to speak and becoming toilet trained. After months of the halcyon phase, which we later referred to as “Good Year Alex,” we were disappointed to see a decline in Alex as he became lethargic and lacked the energy and enthusiasm to do much of anything other than lie on the couch. Worried that he was ill, we took him to the doctor, who ran tests and couldn’t really find anything wrong with him physically but suggested some nutritional supplements to boost his energy.

In a few months, Alex went from being drowsy all the time to being anxious and agitated, and we saw the return of the aggressive and destructive meltdowns we had seen a few years prior. However, these meltdowns were even more frightening because Alex was bigger and stronger, and the episodes were more intense. Once again, the doctor didn’t seem to have any real answers, and eventually we were led to hospitalize Alex for several weeks to have him placed on medications that lessened his anxiety and aggression. While we hated that Alex needed to take medicine that dulled his senses, we had to address his extreme anxiety and make certain that he couldn’t hurt anyone during his intense rages.

After more than a year, Alex has gradually made improvements with a few setbacks along the way, namely dealing with chronic yeast infections of his mouth that make him irritable. Over time, he has adjusted to his medications that now keep him calm but no longer make him as sleepy and dull-witted. This summer we have enjoyed taking him places, such as parks, the beach, and concerts—typical family activities that we were unable to do for many months because of his behavior. In addition, he has rediscovered the enjoyment of reading and watching television, two activities that he basically abandoned for a year, perhaps because he couldn’t focus enough to enjoy them.

In the past few weeks, we have noticed that Alex’s language has improved significantly as he not only speaks more often (At one point during the downward spiral, he barely spoke at all.), but he also speaks in complete sentences, asking appropriate questions and making insightful comments. In fact, his speech is probably the best it has ever been. In addition, he seems to have regained access to his phenomenal memory, telling us about things he remembers from years ago and sharing trivia that he has read. Also, his receptive language and attention span have clearly improved because he answers our questions right away instead of looking at us blankly or ignoring us.

While we are obviously pleased that his behavior and speech have made huge gains, the best sign of progress has been seeing Alex regain his joy. After watching him go through months of being upset or appearing to have no emotion, we are relieved and overjoyed to see him happy nearly all of the time, smiling, laughing, and enjoying life. Like all parents, we just want our child to be happy and healthy (or as Ed and Alex have decided, the three H’s: happy, healthy, and handsome), and we thank God that He has restored both of these in Alex, which in turn, makes us truly happy. Because of the trials we have been through, we know how precious the improvements are, and we are thankful for God’s intervention and for the people He has sent to help make Alex better. For a time, we mourned the loss of Good Year Alex, and now we welcome his return, maybe even seeing a more improved Better Year Alex. As we celebrate the progress, we also maintain hope for the future, knowing that with God, all things are possible.

“And after you have suffered a little while, the God of all grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen, and establish you.” I Peter 5:10

First Fillings

 

In July, we took Alex to the dentist for his regular cleaning and check-up. Because of his severe anxiety issues the past couple of years, we had not taken him for his six-month appointment in about two years, fearing that at best he would not cooperate, and at worst he might have a meltdown. Although Alex has always liked going to the dentist, we did not think he would be able to handle the sensory overload involved in having his teeth cleaned and checked until recently. Once I made the appointment with the dentist who has taken care of him for the past seven years, Alex eagerly anticipated his appointment. Primarily, he looked forward to seeing his beloved dental hygienist who patiently cleans his teeth, praises him enthusiastically, and calls him “Sweetie.”

While this appointment was the same as others in that Alex happily skipped into the office, excited to be there, this time was also different. For the first time in his life, they discovered that Alex had some decay in his back teeth. While we knew that eventually he would have a cavity someday, we hoped that he would continue his lifelong trend of going cavity-free. Also, we dreaded the thought of needing to have cavities filled. His dentist, who has many patients in his practice with special needs, assured us that the best way to handle this procedure was to have Alex’s teeth filled under general anesthesia in a hospital setting. The idea of putting Alex to sleep, especially since he’s never had anesthesia because he’s managed to avoid surgery the way he’s avoided cavities, made me nervous; however, his dentist told me that he had done over 11,000 hospital dentistry procedures. Consequently, we agreed that this would be the best way to fix Alex’s teeth to prevent him from experiencing needless pain and anxiety.

Before Alex could have the dental work done under anesthesia, he had to be cleared medically with a check-up from a doctor on the hospital staff. Even though Alex had a complete physical examination by his family doctor in June, he is not on the staff of the hospital where the dentist has privileges, so we went to a doctor recommended by the dentist’s office. While the doctor was kind to Alex, he seemed to be more concerned with issues unrelated to the upcoming dental procedures. We understood the need to check Alex’s heart and lungs, but the doctor’s insistence upon checking for hernias and scoliosis seemed unnecessary to us. Moreover, we were surprised that he didn’t order any blood tests. Nonetheless, the examination was completed, and we were anticipating the upcoming dental appointment at the hospital.

In the six weeks between Alex’s first appointment with the dentist and the scheduled appointment at the hospital, I had called the dentist’s office a few times with questions about the procedure. They assured me that the hospital would call us to gather pre-registration information a few days ahead of the appointment for the dental work. Since I had not heard from the hospital at all, I called the dentist’s office again and asked them if I needed to call the hospital myself to make sure they had all the needed information to confirm all the arrangements had been made. I was told that I didn’t need to call the hospital, but I could if I wanted to. To ensure everything would be smooth the next day, I decided to call the hospital and check on the arrangements; this was a good idea.

When I called the hospital, I discovered that Alex was not on the schedule for his dental work the next day; apparently someone from the dentist’s office had not notified them. Although my first instinct was to panic, the calm and understanding nurse assured me that she would call the dentist’s office, straighten out the arrangements, and call me right back. As promised, she did make all the necessary calls, made certain that Alex was on the schedule, and called me right back to let me know that everything was ready to go for the next day and answered several questions for me, as well. Things seemed to be set until the dentist’s office called me and asked me why we hadn’t had pre-procedure blood tests done for Alex. A bit taken aback, I told her that the doctor they had sent us to had not ordered any lab tests, or we would have taken care of that already. She told me what lab test needed to be run before Alex could have anesthesia, so I called the hospital nurse who had made the arrangements and asked her what we should do. After discussing options, we agreed the easiest solution would be to have the lab test run when Alex arrived at the hospital for his procedure. Once again, she made arrangements for us, setting up orders for the lab test to be done upon Alex’s arrival. Thanks to her efficiency, we seemed to be ready to go the next day.

With Alex scheduled to check in at 5:15 A.M. for his 7:00 appointment, we had to awaken in the middle of the night to get ready and to drive to the hospital, which is nearly an hour away from our home. Despite having to get up so early, Alex was good natured and enthusiastic about going to a new place. Ed and I were thankful that he wasn’t nervous or scared, which was a blessing to us, because we were a mix of both emotions. At the hospital, we were impressed with how friendly and pleasant we found everyone to be, and Alex was amazingly cooperative. He handled his blood test and the insertion of an IV without flinching or complaining, and we were proud of him for being so brave. He took everything in stride and just seemed to view the experience as an adventure. The fact that the television in his room had a channel devoted to the stock market, one of his interests, helped keep him occupied while he waited was also a blessing. Fortunately, everything ran on time, and his dental work was completed within twenty minutes with no problems. He handled the anesthesia well and came back from the recovery room a bit drowsy but in good spirits. Of course, we were relieved that the dental work was done and that he was fine. However, we were not certain what exactly had been done because his dentist didn’t talk to us before Alex was released, and the nurses were not sure, either. They suggested that we call the dentist’s office to find out exactly what had been done while Alex was there. To be honest, I couldn’t believe that they had filled cavities in the short time he was there and was upset if they had put him under anesthesia just to clean his teeth. However, I planned to call the office to find out for certain.

Yesterday, I called the dentist’s office and discovered that during the procedure they had cleaned Alex’s teeth thoroughly, taken x-rays, and filled two cavities, one upper and one lower. Since he had done well and all the work had been completed, they don’t need to see him for another six months. Apparently, the dental work had been essentially painless because Alex never complained of any mouth discomfort, and he had no problems eating afterward. His only complaint was a slight sore throat and nose from the breathing tube they had inserted, but he handled that well, too. While we hope that Alex can once again go twenty-one years without having any more cavities, we are thankful that the arrangements were straightened out at the last minute and that God took care of him, making everything go smoothly. Moreover, Alex still thinks going to the dentist is fun. If that’s not miraculous, I don’t know what is.

“Your teeth are as white as sheep that are freshly washed. Your smile is flawless, each tooth matched with its twin.” Song of Songs 6:6

Alex the Low Talker

For some reason, Alex has developed the habit of speaking so softly we can barely hear him at times. Since spoken language has always been quite difficult for him, I suspect that he is self-conscious about the way he talks, which may be why he speaks in such a quiet voice. His behavioral therapist has been working with him the past few months, encouraging Alex to “turn up the volume” so that he can be heard easily. While his quiet voice seems preferable to one that is too loud, trying to hear what he’s saying can be a challenge. His therapist has impressed upon us the importance of getting him to speak up so that he can convey his needs, wants, and ideas to other people who may not be as patient as Ed and I are about trying to figure out what he’s saying. In many ways, Alex reminds me of a character from the television comedy Seinfeld, a woman who spoke too softly and whom they nicknamed “the low talker.”  Since the other characters on the show couldn’t understand what she was saying, they simply nodded and smiled, which led to Jerry unwittingly agreeing to wear a “puffy shirt” that she had designed. The other day, Alex said something to me that I couldn’t hear, and I just agreed with him to appease him. When my mom asked me what he had said, I told her I wasn’t sure, but I thought I might have agreed to wear a puffy shirt the first day of school. [For a clip from this Seinfeld episode, click here.]

While having closed captioning beneath Alex as he speaks would be very helpful, we must instead tell him to repeat what he has said in a louder voice and try to figure out what he’s trying to tell us. The results of these efforts are a cross between moderately frustrating and very amusing. Ed and I have developed a sequence of steps to decipher Alex’s code. Sometimes we must go through the entire process, and sometimes we’re able to figure out what he’s saying on the first try. Thankfully, Alex remains remarkably patient as we try to understand him, never getting upset that we don’t know what he’s saying and often finding our attempts hysterically funny. We frequently see him in the back seat of the car, the setting for most verbal misunderstandings, laughing at us because our guesses at what he’s said are apparently way off base. Nonetheless, we keep trying to keep the lines of communication open with him, leading to a process that could be a new game show: Guess What Alex Just Said.

1. First, we ask Alex to repeat what he said a little more loudly. Although he usually complies with this request to repeat, he often repeats in the same low volume as the first time. Sometimes we can figure out what he’s saying by reading him lips.

2. Next, we madly search for context clues. Is he holding something that would help us figure out what he’s saying—a magazine or book, for example? Did he see something out the car window that caught his attention? This is the part of the process where Ed and I usually work as a team, putting our ideas together cooperatively to solve the puzzle.

3. Prior experience can sometimes help us understand what Alex is saying. For instance, he finds the recent closing of a local appliance store interesting, so whenever we pass that store, he’ll jokingly tell us that he wants to go to Sun Appliance. This has become so routine that as soon as the sign for the store comes into view when we’re driving, we’re ready with a response for him.

4. To make hearing Alex easier, we remove all sources of background noise as much as possible. Ed and I have become adept at quickly turning off the car radio and air conditioner to remove any noise that competes with Alex’s quiet voice. Sometimes we also tell him to wait until we get to the next stop sign or stop light so that we can hear him over the car’s motor. Instead of simply raising his voice so that he can be heard, Alex prefers to wait until the next intersection where he won’t have to compete with the running motor.

5. Besides his issues of talking quietly, Alex has articulation problems that make understanding him difficult at times, even when he does speak in a normal tone of voice. Fortunately, he can spell words aloud easily, and we often ask him to “Spell it” so that we can decipher what he’s saying. This is a good strategy because he likes to spell words aloud, and Ed and I have become so good at this game we can frequently figure out the key word halfway into the spelling.

6.  Often, Ed and I just start guessing, using what clues we have at hand and what we think we are hearing him say. This often leads to funny misunderstandings that Alex finds hysterical. The other day in the car, he was trying to tell us what he wanted for dinner, but I thought he was talking about people instead. I guessed Grandpa and game show host Bob Barker, neither of which were anywhere near what he was saying. When we finally figured out what he was saying, we then understood why he found my guesses so amusing. Many times, as with the spelling strategy, Ed and I work together in our guessing, and between the two of us, we can come up with what Alex is saying.

Although trying to figure out what Alex is saying in his quiet voice requires some patience, understanding, and even creativity, we are thankful that he not only wants to communicate with us verbally, but that he also is patient with us as we try to understand him. As much as he seems to find our failed attempts funny, I even wonder if he deliberately speaks softly just to see what we will do. Considering that nearly half of all people with autism are essentially nonverbal, we realize what a blessing it is to have a child who can speak. As we continue working with him to raise his voice so that he can be heard, all three of us find humor in the Guess What Alex Just Said game where we all win when we finally understand what he wanted us to know.

“They longed for me to speak as people long for rain. They drank my words like a refreshing spring rain.” Job 29:33

Why Autism Moms Act the Way They Do

This week, Laura Shumaker, who, like me, is the mom of an adult son with autism, published a blog article entitled “Why Autism Moms Act the Way They Do.” [To read this article, click here.] She described crying spontaneously, joining book clubs but never attending, being socially awkward, and bristling when people compliment her or minimize her situation. While I appreciate her candor in sharing her feelings, I found that as an autism mom I don’t share any of those experiences. A common saying about people with autism is that if you have met one person with autism, you have met one person with autism. Perhaps the same could be said for their moms: if you have met one autism mom, you have met one autism mom. On the other hand, I have found that the autism moms whom I have met primarily through online support groups or through introduction by mutual friends seem to share many of the same qualities I have developed as an autism mom. While I know my experience may be different than others, here is my version of “Why Autism Moms Act the Way They Do,” or more accurately, why this autism mom acts the way I do.

1. Guilt is a big motivator for me. I’m always thinking of what I should have done, what I didn’t do, what I should be doing, and whether I’m doing what I should be doing. I’m often my own worst enemy wondering whether Alex’s autism is somehow my fault or whether I could have done something to make the obstacles he faces easier. My mom, who knows me better than anyone and loves me more than anyone, constantly tells me to get off my case, meaning that I need to stop feeling guilty for what I’ve done or not done. However that same guilt makes me constantly seek ways to make Alex better not just to help him but maybe to atone for anything I think I’ve done wrong along the way.

2. Worry is a constant nagging feeling for me. Along with feeling guilt, I spend a lot of time fretting about Alex’s behavior, health, and future. Do I need to be stricter with him and hold him to higher expectations? Do I need to cut him some slack and be more patient with his issues? Should I take him to the doctor, or should I wait and see if symptoms improve on their own with time? What do I need to do to prepare him for life? What will happen to him after I’m dead and gone (hopefully after living a long and productive life as his mother)? These feelings of uncertainty haunt me often.

3. People who complain constantly about their typical children annoy me. When parents of “normal” children whine about their kids not doing their homework or having messy rooms or being lazy, frankly I want to shake them. Do they realize how lucky they are to be dealing with rather minor issues? Certainly, I can understand their frustration and wanting their children to be the best that they can be, but I would be thrilled if my biggest concern were Alex’s messy room. When parents gripe about their kids, I simply bite my tongue and say nothing. I suppose that having a special needs child helps put things into proper perspective.

4. Research is my favorite pastime. Thanks to the Internet, I have access to all kinds of medical studies and data, as well as an opportunity to compare notes with other autism parents around the world. Many of the things I’ve learned through research have been beneficial to Alex, and I’ve also been able to share what I’ve learned with other parents who are dealing with similar issues. Through my reading of various medical publications, I have learned terminology that allows me to communicate effectively with Alex’s doctors. His current doctor seems to be pleased, for example, when I mentioned gamma linolenic acid as an anti-inflammatory essential fatty acid after he suggested evening primrose oil for Alex. When I ask questions or make comments that include medical jargon, he enthusiastically nods his head and says, “Exactly!” that makes me think he enjoys our conversations almost as much as I do. I’m thankful that he seems to appreciate the research I’ve done over the years and is always willing to discuss ideas with me to ease my worries and guilt.

While I can only speak for myself, I suspect that I’m not the only autism mom who exhibits these characteristics. Moreover, I also suspect that some of these qualities are common to all moms. A few weeks ago, I enjoyed a milkshake moms’ night out with two of my close friends, one of whom is the working mother of an infant and the other who is a stay-at-home mother of two young children. Even though our kids are at very different levels of development and our balance of career and family are different, we find more commonality than difference. All three of us share a devotion to our children that surpasses anything in life. We worry about them, feel guilty about things we shouldn’t as we question our choices, find whiny parents annoying, and search the Internet and books for guidance in raising our kids. Motherhood is always challenging; autism just adds a few unique challenges. However, through the years, dealing with obstacles has developed my faith in ways I could never have predicted as I continue to learn to choose faith over fear, easing guilt, worries, frustration, and the intense need to know why things happen. While I constantly pray for Alex’s healing, I am thankful for the faith that sustains me as well as the reassurance that in the end everything will be all right.

“Let us think of ways to motivate one another to acts of love and good works.” Hebrews 10:24

Dealing with Change

A common characteristic used to describe people with autism is that they possess an insistence on sameness and a resistance to change. In fact, if one Googles “resistance to change autism” (as I did out of curiosity), over one million results can be found. As I have mentioned in previous blog entries, Alex is remarkably flexible about change and spontaneity. While he enjoys the predictability of some routines, he is also willing to try new things, even on the spur of the moment. However, I, who am not on the autism spectrum, resist change mightily and need time to adjust and plan before I can jump into something new. This week I was reminded of the difference between Alex and me in this respect.

For the past year, Alex has been working with a behavioral therapist who comes to our house each week for an hour. Through a variety of activities, the therapist addresses Alex’s issues, such as his anxiety and impulse control, and also works with him on social skills that autism impairs, such as respecting personal space and making conversation. We have been pleased with the progress we have seen Alex make as he has learned some calming techniques, self-control, and interpersonal skills. Moreover, he looks forward to these weekly sessions and considers his therapist his friend.

When we began behavioral therapy a year ago, he was first assigned a therapist who interacted quite well with him. However, in March, we found out she was moving out of state because her husband had taken a new job. She assured us that she would help Alex make the transition smoothly by bringing his new therapist to shadow a few of their sessions so that he could meet her and so that she could learn the routines they had established. As promised, the transition period gave Alex and his new therapist time to get to know one another and adjust nicely before she took over the therapy sessions on her own.

Although I was a bit concerned about how Alex would adapt to the new therapist, he clearly embraced the change immediately and eagerly looked forward to working with her. Her kindness, enthusiasm, and humor endeared her to him and us right away, and we felt blessed that she had been chosen to work with him. In fact, I commented that she was a gift from God because she had come to us all the way from Turkey. Recently, we learned that she had come to the United States to get her master’s degree and had planned to return to her home country, but she met the man who was to become her husband, an American from this area, and decided to complete her doctoral degree and live here permanently. For all those things to fall into place so that she could work with Alex, a divine plan had to be in order.

Listening to their therapy sessions from the next room, I not only appreciated that she made Alex accountable for his behavior and set reasonable expectations for him, but that she also praised him freely, often telling him in her delightful Turkish accent, “Alex, you are so smart and funny.” Anyone who is kind to Alex holds a special place in my heart, after all. When she took a trip back to Turkey to visit her family this summer, she excitedly told him about her experience of seeing turtles coming from the Mediterranean Sea to lay their eggs in the sand, knowing that Alex has a special interest in turtles. She even brought him a souvenir from this trip, a small realistic-looking turtle that she said made her think of him while she was on vacation. Of course, he was pleased that she brought him a gift, but he was even more pleased to see her after she returned from her trip.

This week, we found out that Alex’s beloved therapist has been promoted to a supervisory position and will only be working with him for a few more weeks to help him transition to a new therapist. I have no doubt that my face clearly registered the deep disappointment I felt when she told me that she would be no longer be working with Alex once she begins her new job. While I’m pleased that her excellence has been rewarded with a promotion and know that she will do a wonderful job in that capacity, I’m sad to lose her as Alex’s therapist and will miss her weekly visits.

Upon meeting his new therapist, who will be observing sessions during the transition stage, Alex seemed quite receptive to her, smiling at her often and asking her his usual litany of questions to learn more about her, including how tall she is and how many teeth she has. Apparently his current therapist had prepared her for this interrogation, as she laughed and willingly provided Alex the statistics that he needs to quantify her in his mathematical mind. While I’m mourning the loss of his current therapist, Alex is looking forward to getting to know someone new, even though I’m sure he will miss seeing his old friend, too. As we prepare for another change, I remember that God knows what Alex needs even more than I think I do, and I’m certain that He has allowed this change of therapists for a good reason. With that in mind and with Alex’s example of flexibility in spite of his autism, I look forward to what his new therapist will do to help him learn and grow to become the best that he can be.

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

Vision

Because I am terribly nearsighted, I have worn glasses or contact lenses since I was eight years old. Although Ed’s vision is much better than mine, he has worn glasses since he was a teenager. Fortunately, Alex has always had more acute vision than either one of us, spotting small details at distances and showing that he apparently did not inherit poor eyesight from us. For this reason, we have not felt the need to take him to the eye doctor yearly. We would check his eyesight informally by holding up fingers to count or print to read and felt satisfied that he could see well.

When Alex was five years old, our family optometrist referred us to a developmental optometrist who specialized in visual therapy. This eye doctor diagnosed Alex as being slightly farsighted, which he assured us was typical for children that age, and as having convergence disorder, meaning his eyes did not track together properly. He recommended glasses with prism lenses to help his eyes work together better and a little bit of magnification to help him read or do close work more easily. In addition, he suggested having the lenses tinted slightly pink (the proverbial “rose-tinted glasses”) to cut down glare and put less strain on his eyes. After selecting the most durable frames we could find, we ordered a pair of these glasses for Alex, who happily wore them thinking that he looked like beloved cartoon character Arthur. Besides wearing the glasses, the developmental optometrist had Alex doing eye exercises on a weekly basis at his office and on a daily basis at home. Within a few weeks, we noticed several big improvements as Alex’s balance seemed much better, allowing him to walk up and down stairs and curbs more easily. Also, he stopped tipping his head to look at things. Pleased with Alex’s progress, the eye doctor felt that the glasses and eye therapy had achieved what he had wanted them to do, and he believed that Alex no longer needed the glasses or the eye exercises. We were amazed by how rapidly this therapy worked and delighted with the results. I put away Alex’s little glasses, which I recently rediscovered in our linen closet a few weeks ago.

This summer, Ed and I went for our annual eye exams and found that both of us needed new glasses, and I also needed a new pair of contact lenses. Apparently, Alex felt left out of this routine, and he kept asking to go to the eye doctor. Unsure of how well he could cooperate with the exam and feeling fairly certain his eyes were fine, we kept delaying making an appointment. Finally, I decided taking him to the eye doctor was easier than listening to him nag me, and I made an appointment for him this past Monday. Thankfully, the staff was very understanding of his sensory issues, and he was quite cooperative about doing the tasks they asked of him. The optometrist explained to Alex everything he was going to do, which seemed to reassure him and allowed him to get through the appointment smoothly. As the eye doctor had Alex read aloud the letters on the eye chart, Alex easily breezed through the first several lines. However, when he got to the smaller print, he suddenly stopped. When the optometrist asked him if he could read that line, Alex told him no. Since Alex’s eyesight has always been perfect, I thought at first Alex was just being uncooperative, but he didn’t really seem like he was being difficult. After the eye doctor placed some corrective lenses in front of him, Alex began reading the small print aloud, almost excitedly that he could now see the letters he could not see before.

The optometrist’s diagnosis was that Alex’s eyes are very healthy and his vision is good at 20/30. However, he felt that Alex could benefit from wearing glasses to improve his distance vision. After his eye exam, we helped Alex pick out a pair of frames (durable, like the ones he wore at age five—even the same brand), but he seemed rather uninterested in the choices and trusted us to make the final decision. Since his eyes tend to be light sensitive, we also opted for the transition lenses that darken in bright light, allowing his glasses to also double as sunglasses, which he always wears outside. The optician took all the needed measurements and told us that the glasses would be ready in about ten days. We wondered how much Alex would pester us in that time about when he would get his new glasses.

Fortunately, Alex waited patiently for his glasses to arrive, and we were surprised that they were ready to be picked up on Friday. Once again, he handled this experience well, calmly cooperating as the optician adjusted the glasses for him, and he was content to wear them. As we drove various places over the next couple of days, he seemed to enjoy looking out the windows more and making comments on things he spotted with his improved vision. He appears to have adapted well to wearing them, even asking, “Where are my glasses?” upon awakening the first morning after he got them. While we wish his perfect eyesight had continued, we’re pleased that he had a good experience at the optometrist’s office, he has a positive attitude about wearing glasses, and his vision can be easily corrected. Once again, Alex has shown us his remarkable flexibility, despite the tendency for people with autism to dislike change, as well as his tendency to see new experiences as adventures and not something to be feared. While we often worry that he may not adapt to situations, he thankfully proves us wrong, and we are grateful that he does.

“At that very time, Jesus cured many people of their diseases, illnesses, and evil spirits, and He restored sight to many who were blind.” Luke 7:21

What I'm Doing on My Summer Vacation

Yesterday I went for my annual mammogram. As any woman knows who has been through this ritual, this test involves the emotional aspect of putting aside modesty to allow our breasts to be x-rayed along with the physical aspect of having them and our collarbones smashed in machinery to get the best image. Nonetheless, we go through this test to make certain we are healthy or, God forbid, to catch cancer in early stages. As an autism mom, I have to be healthy because my child, probably even more than others, needs me to be healthy to take care of him, even at age 21. I had to remember this yesterday as I endured rather insulting comments regarding my profession as an English teacher from the technician who was doing my mammogram, essentially telling me that teachers are bossy, kids don’t like English, and grammar is boring. Wisely, I knew not to waste time trying to convince her otherwise; raising a child with autism has made me less sensitive to criticism and smart enough not to waste time on those who do not understand. The comment that hit me hardest, however, was when she remarked how nice it must be to have my summer off. She went on to say that when children are smaller, the teacher mom can spend the summer having fun with them, and when the children are older, the teacher mom can relax and do projects around the house. I didn’t bother to mention that my son has autism, nor did I try to explain life with autism to her; she wouldn’t have understood anyway.

This week, like many weeks, found me making an assortment of phone calls for Alex, trying to get appointments arranged and checking on various things he needs. For example, on Monday I had to call the pharmacist about one of his medications that seems to be on a different refill schedule than his other medications. Thankfully, she is very helpful and pleasant, and she went back through the records to find the original prescription, confirming that I would need to call his psychiatric nurse practitioner’s office to have her authorize a refill. When I called her office, I also set up an appointment for next month for his six-months check-up. After doing that, I remembered that we already had an appointment scheduled that afternoon with the case manager who oversees his state disability funding and his behavior therapist to work on his annual report for the state to continue services. I called the office again, rescheduled his appointment for the morning instead of the afternoon, thinking that would create a busy, yet workable day.

On Tuesday, his behavioral therapist came for her weekly session, and as usual, I flew around the house making sure it looked presentable for her visit. In addition, I wrote his weekly report for her, updating her on behavioral issues to keep her apprised of his progress and any issues she needs to address with him.  On Wednesday, we took him to the dentist, which is something Alex actually enjoys “one hundred percent,” largely because his dental hygienist is wonderfully sweet and patient with him. Also, we have been blessed that Alex has never had any cavities or any other dental issues, so his visits to the dentist have just involved having his teeth cleaned and checked. Because of his anxiety issues, we hadn’t taken him to the dentist for over a year. Unfortunately, they discovered that he has some cavities in his back teeth that will need to be fixed, and the dentist wants to do this under general anesthesia in the hospital because of Alex’s anxiety and sensory issues. Although we would rather Alex didn’t need to have any work done, we agree with the dentist that this is the best way to handle the situation to avoid upsetting him.

On Wednesday, I received an e-mail from the intake coordinator from the agency where we are on a waiting list trying to get Alex into a day program. She was notifying us that she would be taking a different position within the agency and would be turning over Alex’s file to another intake coordinator. Later that day, she called me to discuss respite care services the agency could provide for us. After not having heard from her in months, I was surprised that she contacted us to offer assistance. Nonetheless, I appreciated that she explained the various services we are eligible to receive, and I was able to remind her that we were most interested in getting Alex involved in the day program, which apparently is still on hold at the moment. Fortunately, we’ve become good about waiting for this after over a year of being on the waiting list.

On Thursday, Alex’s dentist’s office called me to let me know they had set a date for his dental appointment at the hospital next month. In addition, he must see a doctor affiliated with the hospital where the dental work will occur the week prior to that appointment to make sure he is healthy enough for the anesthesia. I appreciated that she had scheduled this for us, as well, but it was the same time as the appointment I had rescheduled with his psychiatric nurse practitioner, which meant calling her office to change his appointment again to the following week. Fortunately, we are able to take care of all these various appointments before Ed and I have to go back to our teaching jobs.

On Friday, Alex decided that he needed to go to the eye doctor, probably because Ed and I have both been to the eye doctor for our annual appointments this month. Even though all evidence shows that Alex has perfect eyesight, he insists that he should have his eyes checked. After he pestered me repeatedly about making an appointment, I called the optometrist, and Alex is delighted that he will see him tomorrow morning. Ed and I are praying that Alex will be cooperative for the eye tests and that his eyes are as healthy as we think they are.

Yesterday, after my mammogram, I spent time researching a new antifungal drug Alex’s doctor has prescribed in yet another attempt to get rid of the thrush infection of his mouth that we have been dealing with for over a year. With all the medications Alex takes to keep him calm, adding anything new to the mix makes me a little nervous and sends me to websites checking for possible drug interactions. Convinced that the new antifungal should be safe, we will start that medication today and pray this will be the magic bullet that finally eradicates the stubborn candida fungus in his mouth.

Aside from my role as Alex’s personal assistant in setting up and coordinating appointments with various professionals who help him, I’m also his social director who comes up with daily outings to keep him entertained and makes sure he has a fun summer. This week, we went to two outdoor band concerts in the park, visited Bass Pro Shop for the first time, had dinner at Taco Bell twice so he could enjoy his favorite Cantina Bowl with rice and beans, took him to an arcade to play video games of Wheel of Fortune and Deal or No Deal, walked with him on the trails of a nearby nature preserve, got him apple chips and a soft drink at the Target Café, and took him to the Indiana Dunes State Park beach where he waded in Lake Michigan. Certainly, we had a busy week, but an enjoyable one, too, even thought it was not the relaxing/home project one suggested by the x-ray technician who did my mammogram. However, this week reminded me that I must be at my best so that I can take care of Alex’s needs, and I’m thankful for my health, even if that means enduring those annoying mammograms.  While I wish my house were more organized and that I had more time to read for enjoyment instead of research, I am grateful to have my summer “off” so that I can devote more time to Alex, making sure that he, too, is healthy and can enjoy life to the fullest.

“Work willingly at whatever you do, as though you were working for the Lord rather than for people. Remember that the Lord will give you an inheritance as your reward, and that the Master you are serving is Christ.” Colossians 3:23-24

Staying on Track

Many parents whose children have autism note that their children have an intense fascination with trains. When they are little, they often have great affection for the Thomas the Tank Engine cartoons, books, and toy trains, and when they are older, many of them memorize schedules for subway trains. This interest in trains often remains unclear, as many of these children cannot express why they favor certain things. When Alex was little, he enjoyed watching the Thomas the Tank Engine cartoons, and I wondered if the soothing voice of Mr. Conductor mesmerized him. Thanks to his uncle, Alex had a wonderful set of trains that featured Thomas and his friends. I often suspected that he especially liked them because they had numbers, which he holds dearly, on them. Perhaps some children appreciate that they line up orderly, a trait many children with autism find interesting. Lately, I’ve begun to think that Alex’s interest in the toy trains may be linked to his one-track mind.

Studies show that other psychological conditions often co-exist with autism, such as social anxiety disorder or obsessive-compulsive disorder, more commonly known as OCD. These so-called co-morbid conditions that frequently accompany autism may cause challenging behaviors in addition to the impaired language and social skills common in autism. When Alex was eleven years old, we first noticed that his OCD behaviors were becoming more intense and needed to be addressed. His primary obsession was the concept of time, and he would repeatedly ask us what time it was, even though he knew how to tell time. Even after we would repeatedly tell him what time it was, he compulsively would run frantically to a clock to check the time as though he needed visual as well as verbal confirmation. When we discussed this behavior with our family doctor, she understood our concerns and started him on a low dose of the SSRI medication Prozac to address his OCD behaviors. Within several days, we saw a great improvement in his behavior, as Alex no longer needed to ask us over and over what time it was; instead he would calmly check the clock once when he wanted to know what time it was. This came as a huge relief to us to see the calming effect the medication had upon his behavior.

Last year, his psychiatric nurse practitioner decided that Prozac had lost its ability to keep his OCD in check over time and switched him to another SSRI, Zoloft, which generally seems to keep him calm and manage his behavior well. However, when Alex becomes anxious, he will revert to asking the same questions over and over, which tests Ed’s and my patience to the limits. Most of the time, Ed and I are remarkably patient with Alex; however, patience is something we have developed though the years, as I don’t think either of us are naturally patient people. At least, I’m not. Nonetheless, in dealing with Alex’s sometimes challenging behaviors, we have learned that losing our patience with him can be akin to pouring gasoline on a fire. Besides, most of the time that he is trying our patience, we know that he really can’t help it.

Just as when he was younger, Alex focuses upon time and when things will happen. Even though he knows the routines we have created to ease his anxiety and have posted a daily schedule on the refrigerator for him to consult, he still constantly asks us questions about when lunch, dinner, bath time, and bedtime are. He also asks us throughout the day when we are going places and when he can weigh himself. Knowing that he needs us to answer these questions to ease his anxiety, we patiently answer him several times during the day. In case he is just making conversation, we will sometimes vary the discussion by turning around the question and asking him, “When IS bedtime?” Of course, he always knows the answer to the question because he has heard it thousands of times from us.

Although I would like to say that Ed and I always answer these repeated questions calmly and pleasantly, I have to admit that sometimes, being human, we just lose our patience with him. This week, Alex became overly excited about going places and kept asking us, “How ‘bout going places?” to the point I was ready to hand him keys to my car and tell him to go. However, since he can’t drive and I couldn’t find my keys, which added to his frustration and my own anxiety, this was not going to happen. As I frantically searched through my purse and even dumped the contents on the couch, only to discover later they were on the kitchen table, I finally yelled at him, “Shut up, Alex!” Because I rarely say anything that harsh to him, he was stunned for a moment and stopped questioning me. While I’m not proud of losing my temper with him, at least I had vented my frustration, and my outburst made him stop badgering me long enough to find my keys. Another day this week, Alex was anxious because I had gone to the eye doctor, and he kept asking Ed when I would be home. Even though Ed answered him several times, Alex was not satisfied, and he continued asking him again and again. Finally Ed said to him pleadingly yet more politely than I had earlier in the week (or so I’m told), “Alex, please be quiet!” Fortunately, our annoyance did not intensify Alex’s agitation; in fact, he usually seems amused by our rare outbursts, which makes me wonder whether he provokes us just to get a reaction.

While I’d like to always remain as calm and collected as Mr. Conductor from the Thomas tales, sometimes I find myself “cross” like the tank engines of the stories. In fact, at times our life with autism could use Ozzy Osborne’s “Crazy Train,” with its lyrics, “Crazy, I just cannot bear I’m living with something that just isn’t fair,” as our theme song. Nonetheless, Ed and I continue to keep the train on schedule, as Alex keeps it on his comfortable track, always checking the time at regular intervals, chugging along until we reach our destination of healing. All aboard!

“We also pray that you will be strengthened with all His glorious power so you will have all the endurance and patience you need. May you be filled with joy, always thanking the Father. He has enabled you to share in the inheritance that belongs to his people, who live in the light.”  Colossians 1:11-12

Normal

A common expression autism parents hear is the saying, “Normal is just a setting on the dryer.” Because life with autism is often anything but normal, this quote is intended to offer comfort, indicating that the concept of “normal” is often overrated. Although we wouldn’t trade Alex for the world, we often long for the normalcy of life that autism frequently denies us. Especially in May and June, I have to fight my feelings of jealousy toward people whose children are “normal” when I see their pictures on Facebook enjoying proms, graduations, weddings, sports, and vacations. Certainly, we are grateful for the progress Alex has made, but human nature makes us wish for an easier life, not just for Ed and me, but for Alex, as well.

This week emphasized the value of normal when we took Alex to the doctor for his annual physical. Since Alex receives disability benefits from the state, we must have a doctor assess his status and health each year. On one form, the doctor must confirm Alex’s disability as a diagnosis of autism with impulse control disorder and obsessive-compulsive disorder. These conditions qualify him as having a developmental delay, something that strays from the norm. On another form, his doctor must assess his physical health by checking a box marked N for normal or AB for abnormal for each body part or system. Thankfully, the doctor was able to mark N for everything for Alex, who is generally quite healthy, except for neurological and speech, which he marked as AB, or abnormal, with an asterisk “due to autism.”

In addition to filling out the forms we needed, Alex’s doctor went over recent test results with us. Because of the various medications he is taking, he needs to have blood tests every few months to monitor any possible side effects. Not only are we thankful that Alex always complies nicely with having his blood drawn for the tests, but we are also pleased that his test results always come back in the normal ranges, indicating that he is healthy and that the medications do not seem to affect him adversely. His most recent tests revealed that all of the results were once again in the normal range, which pleased us. In addition to the blood tests, we had also done a 24-hour urine collection to test whether Alex had any heavy metals in his system. When he was eleven years old, we discovered through urine testing that Alex had high levels of the toxins arsenic, mercury, lead, and aluminum. This led us to two years of chelation therapy with the medication DMSA, a sulfur-based compound that rids the body of toxins. Since we had not tested him in several years, we thought that checking his levels would be wise to see if any toxins had built up after completing chelation. Once again, we were relieved to discover that all of his levels on this test were normal, as well. The only thing that marred this good news that everything was normal was Alex’s abnormal frustration with having to wait in the doctor’s office, which is part of our life with autism.

Aside from the medical tests that indicate Alex is doing well in spite of autism, we have recently seen improvements in his thinking and language that suggest his brain is working better. Because his medications that help him deal with anxiety and aggression keep him sedated, Alex has not been as sharp mentally as he used to be. However, we have noticed that he seems to be regaining his perceptive skills lately, making comments on things he notices and asking interesting questions again. In the past, Alex liked to make proclamations that something was rare, and he has started doing this again, saying things when we’re driving, such as, “It’s rare for the speed limit to be 25 [miles per hour]; it’s usually 30 or 35 or 20 in a school zone.” Another day this week as he was looking out the window watching cars go down our street, he commented, “Purple cars are very rare.” In addition, he has been asking unusual questions, including, “Can we get some food from a gas station?” Food has been a big topic with him this summer, as anytime we go someplace, he will ask, “Will there be food?” He also makes very specific requests for food he’d like to eat, including asking me recently to make shish kebab for dinner. While these comments may not seem remarkable, to us they represent a return of the alert and observant Alex who was overwhelmed by anxiety and then sedated by medication for many months. During those difficult times, we missed his observations and comments that revealed his unique perspective on life. Once again, we begin to see how his mind works, and we welcome the return of the bright, funny, and clever person Alex truly is. For us, that is the normal we know, and while we aspire to the more traditional concept of a normal life, we feel blessed to regain what we thought we had lost and appreciate the comfort of the familiar as we hope for even better.

“Then you will have healing for your body and strength for your bones.” Proverbs 3:8

Summer Safety and Autism

In two recent blog entries [To read them, click here and here.], I have discussed concerns regarding the safety of children and adults with autism, given that nearly half of them have a tendency to wander away from safe places. In “Autism and Law Enforcement: A Safety Crisis?” I highlighted the need for better training of first responders in dealing with people who have autism and cited the recent example of an adult woman with autism in my county who was subdued by a police officer with a taser and arrested for stealing a neighbor’s beer in the middle of the night. In a similar story that happened one week ago [To read this account, click here.], a state trooper in Oregon used a taser on an eleven-year-old girl with autism who was found walking down the highway naked in the middle of the night. Because of her refusal to respond to his orders as well her unusual behavior, he assumed that she was on drugs and felt she needed to be subdued with the taser. Unfortunately, she was simply a child with autism who had escaped from her home in the middle of the night without her family knowing she was gone. Certainly the taser was a terrible experience for her, but she could have just as easily been hit by a car wandering around in the dark on a freeway. In fact, this Friday around three in the morning, a car hit a thirteen-year-old boy with autism who has a history of wandering from his home in St. Louis County, Missouri. Because it was dark, the driver could not see the boy until his car struck him; he is currently hospitalized in serious condition with a broken jaw and head injuries. [To read this news account, click here.] Clearly, keeping children and adults with autism safe must be a priority for all those responsible for their care.

On a more positive note, two news stories this week demonstrated the importance of awareness that can save lives. On Tuesday, a pool technician in Florida saved the life of a five-year-old girl who had wandered from her home where her grandmother was watching her while her mother was at work. [To read this article, click here.] After hearing splashing, he found her floating face down in a nearby pond, pulled her to safety, and called 911. Thankfully, his quick actions prevented tragedy, and she will be fine. Because of this experience, her mother has installed alarms on the doors of the family home to alert them should she try to escape again. In another story reported this week [To read this news article, click here.], a suburban Chicago police officer was honored for saving the life of a young boy with autism in March. While off duty and sitting in his car in traffic, Officer Sean O’Brien noticed the young boy wandering alone near a busy intersection, which concerned him. He parked his car and followed the boy, who headed toward the frozen Des Plains River and jumped in the water. The officer pulled the fully submerged boy out of the river to safety. Like the girl in Florida, this boy had wandered from his home while his grandmother was babysitting him. Fortunately, this police officer’s instincts and quick actions saved this boy’s life.

Unfortunately, not every autism wandering incident has a happy ending, as these two did. Many children with autism wander from their homes and die, and parents must take preventative measures to keep their children safe. Last week, I watched a free webinar sponsored by Talk About Curing Autism entitled “Autism-Related Wandering: Keeping Our Children Safe,” presented by National Autism Association President Wendy Fournier. After citing numerous cases where children with autism had wandered from safe places and died, often by drowning, the webinar offered suggestions for parents to help protect their children with autism. I have summarized them as follows:

1.     Make certain windows and doors are secure with locks the child cannot open. In addition, install alarms to alert the family if the child should try to open a window or door. Warm weather often makes escape easier for children, as screen windows and doors are less secure. In addition some parents put stop signs on windows and doors as visual reminders to children not to leave the home.

2.     In public places, make sure whoever is responsible for the child keeps a close watch in case the child decides to bolt. In some cases one parent has thought the other was watching the child when the child wandered. Also, the responsible adult should keep a tight hold on the child by placing both hands on the child’s shoulders or locking arms with the child to make sure he/she can’t run away.

3.     Prepare for an emergency by developing a Family Wandering Emergency Plan; a great resource is AWAARE.org. [To access their website, click here.] Make neighbors aware that your child has autism in case they see your child wandering alone, or in case your child escapes from home. We have made a point to tell our neighbors that Alex has autism. In addition, make law enforcement aware of your child’s autism. Our community has Smart 911, an online service where people can provide more specific information to first responders about their families. [To learn more about this free service, click here.] I registered our family last summer, providing information about Alex’s autism, pictures of our family, details about where our bedrooms are located, and more. While I hope we never need to utilize this service, knowing that we have provided this information gives me comfort that first responders would know something about Alex in an emergency.

4.     Since a large percentage of people with autism cannot communicate verbally, parents should have the child wear identification, especially in public places. A child who wanders may not be able to convey his/her name, address, and phone number; therefore, parents will want to have identification on shoe tags, clothing, or bracelets. This week, I ordered a medical alert bracelet for Alex with his name, our phone number, and AUTISM listed. The company from which I purchased his sporty flex band, American Medical ID, also offers a lifetime service for $20 called Interactive Health Record, in which a pin number is provided along with a toll-free phone number and website, where first responders can access more information, such as medications, emergency contacts, and names of doctors 24/7.  [To learn more about this service, click here.] On my to-do list this week is to register Alex with the interactive website so that when his medical identification bracelet arrives, his information will be current. Another form of identification some parents use is a shirt (which some teenage children who could wander in the night wear to bed) that identifies them as having autism and says if the child is found alone to call 911. This shirt is available from the National Autism Association’s store at their website. [Click here for their website.]

5.      If a child with autism disappears, parents should call 911 immediately for help and not just search for the child themselves. While some parents may fear repercussions by getting law enforcement involved, they need help from first responders. In addition, they must emphasize the need to check first any nearby water, such as pools, ponds, lakes, or rivers, as many children with autism gravitate to these dangerous places.

Although we have been blessed that Alex has never shown any tendency to wander and seems to have a healthy dose of fear when it comes to water, we know that we must continue to be vigilant when it comes to his safety. By putting preventative measures into place, we hope that we can continue to protect him from danger, and we pray that God will continue to watch over him and keep him safe from harm.

“For He will order His angels to protect you wherever you go.” Psalm 91:11

Father's Day

Any parent knows that raising a child is difficult, but raising a child with autism presents special challenges that test a parent’s patience, character, and faith. In some families, these challenges also test marriages, often breaking them apart and leaving those children to be raised by single mothers. While I am in awe of my autism mom friends who have raised their children on their own, I am thankful that I was never placed in that position. Despite the various struggles and frustrations autism has brought to our family, Ed has remained steadfast in his love and commitment to me and to Alex. I’m not certain that Alex fully realizes how blessed he is to have Ed as his father, but I do. On this Father’s Day, I’m not only grateful for the big things that that make Ed such a special father, but I’m also touched by the smaller gestures that could go unnoticed but mean so much.

1. When the three of us are driving in the car, Ed frequently checks the rear view mirror to see what Alex is doing in the back seat as we’re riding along. I often catch him smiling as he observes Alex enjoying the ride or swaying to music on the radio, and this makes me smile, too.

2.  Alex’s impaired motor skills makes teaching him sports difficult, yet Ed continues to teach him patiently, telling him the same instructions repeatedly. When we are at the miniature golf course, Alex is distracted by all the sights and sounds, but Ed never gives up trying to show him how to putt correctly, his hands over Alex’s on the golf club, reminding him to look at the ball as Alex looks at everything but the ball. I have to laugh every time he asks Alex, “Are you looking at the ball?” because I know Alex is not. Nonetheless, he never gives up trying to show him the proper technique.

3. Various times when Alex has awakened in the middle of the night, Ed has slept on the floor next to Alex’s bed to reassure him and to allow all three of us to get some sleep. I’m not sure how much Alex realized Ed’s sacrifice of comfort, but I’m certain that he felt comfort and security knowing his daddy was close at hand in the night.

4. Using a skill he has learned from his father, Alex loves to tease, and he finds joining with one of us to tease the other parent especially amusing. When Ed is making fun of my gullibility in believing stories that he has created, Alex finds this terribly amusing. Similarly, he likes to align with me when I’m teasing Ed about his sighing impatiently when he’s driving and frustrated by other drivers or having to wait for red lights. Alex also enjoys making fun of Ed’s Brooklyn accent, especially the way he pronounces alarm, Florida, foreign, and donkey, and he can perfectly imitate Ed’s extra or absent r’s and his distinctive vowel sounds. Even though Alex and I are finding humor at Ed’s expense, he is always a good sport about the teasing and laughs along with us.

5. Over the years, we have tried a variety of interventions to help make Alex better, and Ed has consistently supported whatever therapies or medical treatments I wanted to implement. From visual therapy to music therapy to chelation and many others along the way, Ed has trusted my judgment, knowing that I had fully researched the pros and cons of the approach, and has never questioned the time and expense we needed to pursue a treatment. When something didn’t work, he minimized the disappointment I felt, assuring me that at least we tried. When something did work, he shared my enthusiasm that we had taken a step in the right direction. I have always appreciated that he has understood my need to seek ways to improve Alex’s health and skills and that he trusts my decisions. I’m certain that Alex would not have made the progress he has, had it not been for Ed’s confidence in me, especially those times when I wasn’t feeling completely confident myself.

For these reasons and many more, I’m thankful on this Father’s Day and every day that Alex has such a loving and devoted father. Happy Father’s Day to all fathers who have blessed their children’s lives, and especially those autism dads who love their children unconditionally.

“For the Lord corrects those he loves, just as a father corrects a child in whom he delights.” Proverbs 3:12

Autism and Law Enforcement: A Safety Crisis?

Two weeks ago, in my blog entry “Autism and Wandering: A Safety Crisis,” I discussed the prevalence of children with autism who wander away from safe places such as home and often wind up tragically drowning in nearby bodies of water. Specifically, I mentioned that in early May three children with autism had wandered away from their families and were found drowned. Since that entry was written, a fourth boy, Freddie Williams from Webb City, Missouri, who was fourteen years old and had autism, wandered from home and drowned in a pond. Clearly, this is an issue that cannot be ignored, and as I noted in my blog entry, parents will need to work with law enforcement agencies to develop training regarding how to deal with children and adults who have autism.

Along with learning how to deal with children who have autism and wander, law enforcement must learn how to interact with adults with autism who are agitated. A little over a week ago, an adult woman with autism in a town neighboring mine was arrested for theft, disorderly conduct, and resisting law enforcement. [To read the online newspaper account, click here.] She was caught stealing a beer from a neighbor’s outdoor refrigerator in the middle of the night, and when police approached her, she was not compliant with their orders, which is not surprising considering that people with autism often have trouble following verbal directions, especially in a situation where they are anxious. Apparently, she refused to come out of hiding from behind a shed, kept her hands in her pockets when she was told to show her hands, and attempted to flee. To subdue her, the police officer used a Taser on her twice. Certainly, the police officer needed to protect herself, but the thought of using a Taser on someone who likely has greater sensory issues than a typical person seems like cruel and unusual punishment. The police chief defended his officer’s use of the Taser, however, saying this use of force was appropriate in this situation.

As if this weren’t upsetting enough, a follow-up article published a few days ago [To read this article, click here.] indicates that a local judge has determined that the woman must remain in jail. Even though he admits that jail is not the proper placement for this woman with autism, he stated that she will have to make do there until they can move her to another facility with proper supervision that will meet her needs yet also protect society. The article also mentions that when the woman clearly did not understand the court proceedings, he addressed her mother, who like her daughter, broke down in tears when the judge told her she could not come home. My heart breaks for this woman who clearly does not belong in jail because she doesn’t understand the ramifications of her actions and for her mother who is trying to help her the best she can. Moreover, I’m not sure where the judge thinks he is going to place her, as we found out last year when we were dealing with Alex’s extreme behavior because no one wants to deal with adults with autism. There is no facility in this county who will deal with adults with autism, and parents of adults with autism are left to do the best they can to help their children on their own.

Last year, a teenage boy with autism in a town about an hour away from mine was shot and killed by police officers when his parents called for help to help subdue him. [To read a news account of this incident, click here.] When he threatened the officers with a knife and cut one of them, two officers each fired one shot, killing the boy. Again, police officers understandably needed to protect themselves, but perhaps better training in dealing with people who have autism might have prevented this tragic outcome. As more children with autism become adult-sized and difficult for their parents to manage, police are more likely to be called upon to help intervene when their behavior becomes extreme and potentially dangerous. Something needs to be done to keep everyone—parents, people with autism, and police officers—safe.

To protect our children with autism, whether they be those liable to wander into a pond or those who may become confrontational in a crisis, parents will need to lead the charge for better training of law enforcement so that they can help our children and not harm them. They need to understand our children’s communication deficits, difficulties with social skills, and anxiety that may lead them to basic “fight or flight” responses. A valuable resource can be found at the Autism Society of Maine’s website regarding law enforcement and autism with several links to excellent information. [To access this webpage, click here.] I’m hopeful that something can be put in place in every community that will prevent children with autism from wandering and drowning and from having adults with autism being subdued with Tasers or guns. After all, both parents and police officers have the same goal—to protect, especially those who cannot protect themselves. Perhaps some good can then come from these sad situations so that our children with autism will remain safe.

“Because you trusted Me, I will give you your life as a reward. I will rescue you and keep you safe. I, the Lord, have spoken!” Jeremiah 39:18

Acts of Kindness

 

In March, I wrote a blog entry entitled “Should Autism Be Neither Seen Nor Heard?” describing incidents reported in the media where children with autism and their parents had been treated badly in public places because of the children’s behavior. Fortunately, we have not had to face scorn in public, partly because Alex likes going places and generally behaves well when he is out and mainly because Ed and I make certain that his behavior never disturbs others. Keeping Alex close at hand, watching for cues that he’s becoming overwhelmed, knowing where all exits are located, and moving rapidly to remove him from others’ view should he become agitated, we never want him to bother other people. Nonetheless, we would hope that other people would be patient, tolerant, and understanding should he have a sudden meltdown, knowing that he really can’t help his behavior when anxiety overtakes him. Moreover, we would do everything in our power to calm him and remove him from the situation so that he wouldn’t be disruptive to other people.

To avoid ever having a public incident, parents whose children have autism would have to stay home all the time, which would not be conducive for their learning social skills and proper behavior in public. While taking these children places may involve some risk, we won’t know if our kids can handle situations until we test them. What has been a pleasant surprise for Ed and me is that not only have we found people who are tolerant of Alex’s differences but are also genuinely kind and willing to be especially thoughtful in their dealings with him.

Last week, we took Alex to the doctor because he has another outbreak of thrush, or yeast overgrowth in his mouth. We have only been seeing this doctor a few months, but we have been especially impressed with how kind he and his staff are to Alex and us. Knowing that Alex is fascinated with numbers and vital statistics, the nurse always tells Alex his weight, temperature, blood pressure, and pulse and tells him what they were the last time he was there. In addition, she makes certain to show him the monitor screen for the electronic blood pressure cuff so that he can watch the numbers change as it registers. While that gesture may seem small, it means a great deal to Alex, and even more to us as parents who appreciate someone making Alex happy. Similarly, the doctor has such a wonderful bedside manner with Alex, explaining everything to him as he exams him and speaking to him in a gentle yet never condescending manner. Not surprisingly, Alex actually looks forward to going to the doctor because they have made appointments such a pleasant experience for him.

Yesterday we took Alex to a Celebration of Wildlife at a nearby county park. Every weekend we try to find outings for him as a way for him to get out of the house, be around other people, and learn new things. The main attraction at this event was a large tent with several animal displays from veterinarians, animal rescue groups, and a zoo. The highlight for Alex was seeing turtles and tortoises, which are among his favorite animals. At one exhibit, he was intently observing a turtle when a young woman asked him if he would like to touch the turtle. His eyes lit up, and he shyly told her yes. She picked up the turtle, assured him it was very nice, and encouraged him to touch its shell. He was pleased to have this opportunity, and we were impressed by how sweetly this young woman spoke to Alex and allowed him to have a special hands-on experience. After that, she offered to let him pet a lizard from the display, also assuring him that the animal was nice, nothing to be feared. As she gently encouraged Alex, he also touched the tail of the lizard, which he found interesting. While Alex was impressed with the animals, I was impressed with how naturally she interacted with him and appreciated how kind she was to make his experience at the exhibit more special. A few minutes later at another exhibit, an older gentleman observed Alex happily watching small alligators swimming in a wading pool at his display and offered to let Alex touch one of them if he would like. When Alex indicated that he wanted to touch the alligator (which had its mouth duct taped shut so that it couldn’t bite), the man kindly reached into the pond to get the alligator and hold it for Alex to see and touch. Noticing that Ed had a camera, the man also offered to let Alex take a picture with the alligator, which was a thoughtful gesture. Like the young woman, he was friendly and encouraging with Alex, but he did so in a way that was genuinely kind, a seemingly effortless gesture to make Alex happy.

Whenever people are kind to Alex, they endear themselves to Ed and me and reaffirm a faith that the majority of people are good. While not everyone may realize that he has autism, I’m sure that most people realize that Alex is different from observing him a few minutes. When people are willing to look past his differences and reach out to him with genuine kindness, I hope they feel the joy they bring him and the gratitude Ed and I feel for their efforts. Of course, Ed and I make certain that they know how much we appreciate their kindness by having Alex thank them for their gestures and always expressing our gratitude to them, as well. While their actions bless us, I hope that their interactions with Alex bless them, too, so that they might bless other children like him. I’m reminded of a line from Israel Horowitz’s play I teach my seventh grade students that is an adaptation of Charles Dickens’ A Christmas Carol: “An act of kindness is like the first green grape of summer: one leads to another and another and another.” Moreover, I hope that Alex not only appreciates the kindness of others but truly learns from their examples so that he can show others kindness, too.

“We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love.” II Corinthians 6:6