Sunday, August 25, 2013

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

Sunday, August 18, 2013

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

Sunday, August 11, 2013

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

Sunday, August 4, 2013

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