Dealing with Detours

“Detour, there’s a muddy road ahead. Detour, paid no mind to what it said. Detour, oh, these bitter things I find. Should have read that detour sign.” ~ “Detour” by Paul Westmoreland

In last week’s blog entry, I described how Alex became agitated during music therapy and responded by pounding on the therapy room door. Essentially, he was probably trying to communicate that he wanted to get out of that room. He was overwhelmed by sensory stimuli––nearly falling out of his unsteady chair and adapting to a new fan––along with having to wait while listening to others’ concerns about the office bathroom being out of order. After redirection to use his hands to play bongos instead taking out his frustration on the door, he was able to calm himself and finish the session successfully.

Although I could have dismissed that situation as an isolated incident, I know Alex well enough to be certain that he would have trepidation about the next music therapy session. Not wanting him to use the door for a percussion instrument again, I considered ways to prevent a repeat performance. As Alex’s parents, Ed and I have always tried to smooth his path in life by removing any obstacles we can and by preparing him for those we cannot remove. However, we also know that life often presents sudden detours that he may have to endure.

When Alex was younger, he would become anxious if he saw a detour sign along the road. He knew this meant that his beloved routine routes would change, and that made him fret. To ease his concerns, I would remind him of an old song my dad likes to sing. From the back seat of the car, we would hear Alex imitating Grandpa by singing in a deep voice, “Detour, there’s a muddy road ahead…” Somehow singing about the detour calmed his fears and made him less worried about having to change course.

If a simple song could help him cope, I knew that Alex could learn other ways to deal with situations that take him by surprise. During his behavioral therapy session last week, we discussed with his therapist the circumstances that led up to Alex getting overwhelmed at music therapy. While his therapist sympathetically understood why Alex had become upset, she also helped him to understand that he can control his reactions when he feels out of control. After working with Alex for more than five years, she not only knows him well, but she also knows how to bring out the best in him.

As she went through the chain of events that led up to his upset, she offered him ways to keep himself calm through deep breathing, repeating positive affirmations (Alex’s favorite: “Everything will be all right.”), and asking for help. By asking him questions, she was able to discern what was really bothering him. No, the new fan did not upset him; in fact, he liked it. Yes, he was upset about the chair tipping and worried that he might fall. In addition, she discovered something he had not told me: the room was too hot. Since Alex is very sensitive to temperature changes, that alone could have set him off.

After getting input from Alex, she and I worked with him to brainstorm ways to make the next session better for him. Since the heat seemed to bother him, I told him that he would wear a short-sleeved shirt instead of a long-sleeved shirt for the next session. In addition, since he didn’t like having to wait, we would plan to get there right before the scheduled time instead of a few minutes early. Finally, his therapist, who is familiar with the music therapy office from having meetings there, suggested asking his music therapist to bring a chair from the conference room. She remembered that those chairs were sturdier than the folding chair in the session room and less likely to tip. After talking with her, both Alex and I felt more confident about going to the next music therapy session.

Because Alex’s music therapist has also worked with him for more than five years, I knew that he would be flexible about making changes to help Alex. After sending him an email explaining Alex’s concerns and the potential solutions we had brainstormed, he immediately called me on the phone and enthusiastically agreed with our ideas. Moreover, he had a better suggestion: instead of moving a chair from the conference room, he would move Alex’s sessions to the conference room. Since that room is larger and has a table for Alex to set his drink, as well as sturdier chairs, he thought the conference room would be a good change. If the new setting did not seem to help, he kindly offered to resume providing Alex’s therapy sessions in our home.

After telling Alex about the new venue for music therapy, he seemed a bit nervous about the change. However, I explained the advantages of the conference room, and he was willing to try. Just to make sure we were aware he wasn’t thrilled about this detour, he waved “the claw,” a gesture he uses to let us know he’s not happy by lifting his arm, bending his wrist at a 90 degree angle, and shaking his hand in the air in a way reminiscent of the 80’s “Walk Like an Egyptian” dance. After waving “the claw” once at me and once at his music therapist, he was cooperative, and his therapist described the session as “fantastic” with no other negative behaviors. Alex had detoured into the conference room and decided the new route was more scenic than the old one. By being understanding and willing to accommodate Alex’s sensory issues, his therapist was rewarded with a cooperative client.

Since autism and anxiety make navigating life more difficult for Alex, he relies upon the adults he trusts to help him cope with circumstances that make him nervous. We are certainly blessed to have a wonderful support team of professionals who not only sympathize with our concerns but who also actively seek ways to make Alex’s life easier and to teach him how to deal with the unexpected situations that make him uneasy. Sometimes, something as simple as changing setting can make a difference, assuring Alex that, indeed, everything will be all right.

“Show me the right path, O Lord; point out the road for me to follow.” Psalm 25:4

Onward and Upward

 

This past week, we met with Alex’s support team for his quarterly meeting. Since he receives state disability services, these meetings are required every three months to monitor his progress, plan for the upcoming months, and discuss any concerns that have arisen since the last meeting. For these meetings, his case manager, behavioral therapist, music therapist, and a representative from the agency that provides respite care and day programs meet with us. Essentially, these meetings resemble annual case conferences for special needs students who have IEP’s.

Because Alex is an emancipated adult; that is, we have decided not to declare him legally incompetent at this time and are therefore not his legal guardians, his presence is required at the meetings. As his parents, Ed and I can advocate for him, but Alex ultimately can make decisions about his support program. Fortunately, he is quite content with his team of professionals and the work they are doing with him. Consequently, my main roles in these regular meetings is to play hostess since they meet in our home and to help Alex navigate the process, explaining what others are saying as needed and translating for him when his speech is difficult to understand. With several people in the room at the same time, he sometimes becomes confused as to whether a question is addressed to him or not. Sitting beside him, I often gently tap his leg to let him know that he is being questioned so that he realizes that he needs to provide an answer. At times, questions are directed to me, and I try to respond as clearly as possible to provide an accurate report of Alex’s current state.

To be honest, I felt a little disappointed right after the meeting concluded. Because Alex has made great progress in the past three months, adjusting amazingly well to his new computer class and making significant improvements in his behavior by showing more patience and flexibility as well as managing his anxiety through coping techniques, I anticipated that we would simply celebrate his achievements. While his therapists noted his improvements, they also focused on areas that still need improvement, namely his tendency to talk too softly, his need to be reminded to use manners by saying please and thank you, and his need to develop greater independence in daily living skills. While I value these skills, I’m delighted that he has overcome two huge hurdles that negatively impacted our lives and led to our getting services for him in the first place.

When Alex’s behavior plan was first written two and a half years ago, he desperately needed to improve three areas: physical aggression, property destruction/mishandling, and inappropriate social behaviors. Thanks to therapy, medication, and maturation, Alex has learned to handle his anxiety appropriately so that he doesn’t resort to aggression or throwing things for attention. This improvement has made our lives so much easier, not worrying that he might have an all-out meltdown. Also, his behavior improvements have permitted him to go more places in public because we don’t worry about him behaving badly. Essentially, our lives have changed so much for the better with the disappearance of the physical aggression and property destruction that we could be satisfied with just mastering those two areas.

However, we also know that Alex also needs to improve his social skills, which his behavior plan defines as not invading other people’s personal space, including not touching them or their belongings, covering his mouth when he coughs or sneezes, and not talking too quietly to be heard or not responding at all. Certainly, as he interacts with more people and goes out into the community more, these skills will serve him well. Yet, I thought after he learned to control his angry outbursts, we might enjoy a plateau period where we just rested a bit, grateful that our lives were finally peaceful. Instead, the meeting this week reminded me that we need to keep moving forward to help Alex fulfill his potential. Yes, he is much better than he was, but his therapists believe that he can continue to get even better and will push him to improve his social skills until he masters those, too. They reminded me that “good enough” is selling Alex short because he can be better than that.

As I reflected more on the meeting, I was able to get past focusing on the weaknesses they discussed and the work we still need to do as his support team and to hear why they believe he can overcome those issues that still linger. They describe him as “smart” and “capable”; they see beyond the typical autism behaviors of social impairment to what he can achieve. Also, I realize that when he masters all these goals, he will need new ones, and at some point, he may not need all the support he is currently receiving. As much as I’d like to rest on the peaceful plateau I imagined, I know that we need to keep moving onward and upward so that Alex can achieve what he is capable of doing.

Looking back, I can recall various tasks that seemed unending and perhaps even impossible. We wondered if Alex would ever become toilet trained, and eventually he did learn to go to the bathroom independently, which made our lives easier. We wondered if we would ever be able to have a conversation with him because his language skills were so weak, and now we can talk with him, despite some lingering speech issues, and find ourselves amused and amazed by what he tells us. We wondered if we would ever be able to take him out in public and trust that he would behave himself, and now we take him someplace nearly every day, not worried that he will misbehave and enjoy watching how happy it makes him to be out and about in the world. Consequently, I know now that Alex has great potential, and I need to be reminded that he can overcome these difficulties with time, patience, and support.

While I first thought his support team was not fully appreciating what Alex has accomplished recently, I can now recognize that they see him more objectively than I can. As his mother, I focus on what he has done, but his therapists are looking forward to what he can do. For years, Ed and I were unable to find professionals who could help Alex, and now we are blessed with a group who not only understand him as he is but also can envision what he can be with time and intervention. Working with them, we know that we will move onward and upward, not resting on what we’ve already accomplished, but knowing that Alex can, indeed, keep improving, master goals, and reach his full potential.

“Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me.” Philippians 3:12

May Days

Poet T.S. Eliot once wrote, “April is the cruellest [sic] month,” but I’d have to go with May instead. For teachers like me, the last month of school involves giving standardized tests and trying madly to finish teaching curriculum to students whose minds have understandably drifted to imminent summer vacation. With the stress of trying to accomplish too much in not enough time, colleagues become annoyed with those who don’t pull their share, don’t follow the rules, and don’t seem to care. Knowing that Alex is very attuned to my emotions, I try to keep any frustrations from work hidden from him, but I suspect that he senses my agitation at times. Also, every spring he seems to be a bit off, probably due to pollen in the air and atmospheric changes that occur in late spring. Needless to say, May brings challenges to both of us.

This week, the first of the month of May, Alex has been a little off. Although he doesn’t complain of any physical symptoms or show any signs of illness, he has been somewhat lethargic, preferring reclining to recreation. Usually when I offer to take him grocery shopping with me, he leaps up, ready to go because he likes going to the store. However, this week when I have suggested that we go shopping, he has suggested instead, “Daddy can go.” While I’d like to think that Alex is concerned about my doing too much and trying to shift some responsibility to Ed, I think he just prefers to stay home this week.  If, indeed, pollen is an issue, he is showing wisdom to stay indoors to avoid exposure to things in the air that bother him.

Despite not being one hundred percent, he had terrific sessions with his therapists this week. On Tuesday, his behavioral therapist heartily praised his work, saying he had a “wonderful” session, and on Thursday, his music therapist also told me that he had done very well. Nonetheless, Alex didn’t want to go anyplace this week and made excuses for not going whenever suggestions were made about going places. Yet, he seemed to be in a fairly good mood most of the time and revealed progress in unusual ways. One day, he kiddingly told Ed something implausible, and when Ed asked him if he was joking, Alex responded, “No, that’s hyperbole!” (This is what happens to children of English teachers; they use a literary term for exaggeration.) This week he also suddenly mastered using the toilet standing up instead of sitting, as he has insisted upon for all these years, and he seemed quite proud of himself for this accomplishment. Since he has been doing so well in various areas lately, we didn’t give his reluctance to go places much thought.

On Friday, we were to meet his behavioral therapist at Target, one of his favorite places to shop. After a quick lunch at the Target Café, we planned to walk around the store so that he could shop and practice his social skills at the same time. These weekly outings have been quite helpful to his development of practical skills and applying what he has learned during therapy sessions. As we ate lunch, Alex didn’t seem as enthusiastic about eating as he usually is, and he didn’t seem as excited about shopping at Target as he normally is. Nonetheless, he half-heartedly went along with the plans. When we decided to look for birthday cards for his cousins, our plans were deterred a bit because we found a woman had parked her shopping cart in the middle of the aisle and seemed oblivious that she was needlessly blocking the path. When Alex’s therapist sweetly said, “Excuse me,” the woman glared and barely moved her cart. As I could feel my annoyance rising, I fought my desire to tell her that she could benefit from learning some of the social skills my kid with autism practiced. Whether Alex picked up on my irritation or felt his own with the rude woman, he began to set his jaw in a way that I recognized as a signal he had had enough.

As I asked him what was wrong and tried to remove him from the aisle quickly, he told me that he was tired of waiting and flung his hand toward me. Putting to use my limited tae kwon do skills, I blocked his hand so that he didn’t make contact with me. Unfortunately, I didn’t grab his other hand in time, and he scratched his therapist in a rapid movement of frustration. Taking him by the arm, I quickly found a place where he could sit and calm down, and he cooperated with his therapist and me by following our directions. Fortunately, he de-escalated very quickly and apologized; unfortunately, his unacceptable behavior would have to be reported for his files. For all the weeks his behavior has been excellent, I knew that one moment would sadly mar his record of good behavior. As Ed noted in an analogy to the game Chutes and Ladders, for all the ladders Alex has been climbing with good choices and good progress, he had fallen down a chute in one moment of upset. Whether it was pollen, picking up on my work stress, or the annoyance with a rude shopper, Alex reacted in a socially unacceptable manner for one moment.

Thankfully, his therapist reacted with understanding and compassion, and she focused upon the positive aspects of Alex’s compliance immediately after the incident and his ability to calm down quickly. Having dealt with much longer and much more aggressive meltdowns with Alex in the past, I knew that this showed how far he has come. Also, his therapist noted that his behavior not only revealed progress in dealing with issues but also the clear need for continued therapy so that Alex doesn’t react in negative ways when he becomes overwhelmed. While he and I both felt bad about what had happened, she assured us that she was fine and that she understood he is still learning how to cope in a variety of situations.

Last night, Alex suddenly said to me, “I was worried.” Because he rarely initiates discussions about his feelings, I was surprised by this out-of-the-blue admission. Moreover, his issues with language make expressing himself rather difficult, especially when he is upset or when he is talking about abstract ideas. Although I wanted to press him to find out what was bothering him, I somehow sensed that he had told me all he could, and I respected his confession on its face value. As I tried to reassure him and explain that he needed to use his words to tell us when he is worried instead of using his hands, he seemed to understand. Maybe he’s ready to climb some more ladders this week; I hope so.

“Give all your worries and cares to God, for He cares about you.” I Peter 5:7

"Knockin' on Heaven's Door"

An old saying goes, “A steady knock wears the rock.” Over the years, I’ve discovered that raising a child with autism often needs that steady knock, requiring immense patience, attention to detail, and confidence that eventually the task will be rewarded as the old makes way for the new. For some time, dealing with certain behaviors of Alex’s has been consistent knocking, yet feeling as though we’re not making much progress. Lately, however, we’ve had that satisfaction of where we make sudden headway and truly see the end results in sight. These moments give us encouragement to keep plugging away and make us thankful that our efforts are worthwhile as we are moving forward.

In December, we increased Alex’s behavioral therapy sessions from once a week to twice a week with the hopes that the additional sessions would help improve his social skills. In working with his behavioral therapist, who is wonderful with Alex, we decided to dub these additional sessions “Fun Fridays,” where she, Alex, and I would go places and do things he enjoys. Our outings would be the equivalent of recreational therapy, which is designed to use skills in the community that have been learned in therapy, such as social skills and coping skills. In essence, these sessions require him to apply in the real world what he has learned in therapy. Before we leave for these outings, his therapist gives Alex a briefing, preparing him for things he may encounter and reviewing social and coping skills. She has made small cards with visual cues for me to carry in my purse in case Alex needs them that say things such as, “I can use my calming skills” and “Take deep breaths” and “Count to ten.” She also reminds him of common courtesies to use while we are out, such as saying, “Please,” “Thank you,” and “Excuse me.”

Overall, these Fun Fridays have gone remarkably well, and all three of us have enjoyed our outings to the library, the bookstore, and restaurants, as well as going shopping. As the weather gets warmer, we are looking forward to going to various parks to enjoy the outdoors. Several weeks ago, Alex decided that he really wanted to go to a local restaurant that is a retro-style diner, and his therapist and I decided that we would use that as a reward he could earn with good behavior over a month’s time. Actually, we had some concerns about how he might react to being in a restaurant that is typically quite crowded at lunchtime, and she wanted him to be able to order his own food, which required repeated practice over several sessions. However, he held up his end of the bargain and fulfilled his obligation to behave himself for the month, earning his trip to the diner for lunch. The day we took him for his reward lunch, the diner was completely full except for one table near the back. Although I had some trepidation about how he would cope with all the people and noise as well as having to wait, he handled the situation beautifully, even ordering his own food to his specifications: two Polish sausage without the bun and with grilled onions, cole slaw, and a medium Sprite. His therapist and I were pleased with how well the lunch went, and Alex really seemed proud of the reward he had earned.

Even with the progress Alex has made, thanks to therapy, medication for his anxiety, and healing that has clearly taken place, we still work on social skills that prove more difficult for him than most people. Like a small child, we constantly remind him to use social graces, such as thanking others for doing things for him. Despite modeling these behaviors for him and verbally cuing him many times daily, Alex, like many people with autism, doesn’t naturally think to use these polite phrases on his own. Last week, his therapist suggested that we try visual cues instead. Even though Alex will comply when we prompt him verbally, he hasn’t reached the point where he will say what he should on his own, and asking a twenty-two year old, “What do you say?” is becoming tedious. At first she suggested sign language, but Alex has always been resistant to learning signs in the past. However, I thought he might respond to numbers, and we tried holding up one finger for “Please” and two for “Thank you.” Immediately, Alex caught on to the system, which has worked like a charm. When I shared this new routine with Ed, he tried it with Alex, who correctly responded with the appropriate phrase for each visual cue. When Ed held up three fingers and teasingly asked Alex what that meant, without hesitation, Alex came up with his own clever idea, saying, “You’re welcome.” This simple and effective solution after years of trying to get Alex to use his manners has been the reward for us of that steady knock. While we wish we had thought of this idea years ago, we’re just thankful that he’s taken to the number system quickly and consistently and are hoping we can eventually phase out the visual cues so that he does what he should automatically.

As a reward for his good behavior and for faithfully responding to our one/two cues, we took Alex out to dinner last night at the diner he likes so much. Sitting in his favorite booth, where an album of Bob Dylan hangs on the wall (hence why we have dubbed this “the Bob Dylan booth”), Alex used his manners nicely and enjoyed his Polish sausage and cole slaw. He also liked listening to the oldies music playing in the background, correctly identifying the songs’ artists, including the Beatles and the Rolling Stones, thanks to Ed, who has taught him about classic rock as they have listened to music they both like together. At one point, Alex began swaying to the opening chords of a song he recognized, and he and Ed both smiled, knowing it was Bob Dylan, whom they love and I don’t. Suddenly Alex began to sing—perhaps applying the skills he has learned in music therapy—the words of the song, even more clearly and more in tune than old Bob himself: “Knock, knock, knockin’ on heaven’s door.” He continued to sing, unabashed and undeterred if he forgot a word, just singing every note and every word joyfully. To most parents, this would be no big deal, but for us, this showed us how far Alex has come. As Alex sang the entire song, I’m sure Ed felt pride as Alex sang the song of his musical hero, and I was moved to tears that our son who has struggled with speech and has lacked confidence in his ability to communicate could sing to his heart’s content. As I looked up on the wall, even Bob seemed to smile in bemusement; we just keep knock, knock, knockin’ and getting closer to heaven every day.

“And I say unto you, ask, and it shall be give you; seek, and ye shall find; knock, and it shall be opened unto you.” Luke 11:9

Christmas Newsletter

Recently a friend shared a Christmas newsletter another friend had sent enthusiastically detailing the events of the past year. While this annual tradition can simply be a way to summarize the family highlights, some use this opportunity to boast about their accomplishments. Of course, their children are the smartest, best-looking, amazingly athletic, most popular, and highly talented young people to ever walk the face of the earth. Certainly, parents should be proud of their children and their achievements, but I wonder if they ever stop to think how their gloating makes others feel whose children do not possess all the gifts theirs do. As an autism mom, I must fight feelings of jealousy toward parents who have typical children, let alone those who are extraordinary. Let’s just say that these bragfests do little to inspire the Christmas spirit in me.

One evening last week, after Alex had an especially good day, Ed commented that we appreciate little things that few others would really understand. For example, we have taken Alex shopping in crowded stores this past week, and he has shown great improvement with his impulse control, never reaching to touch anything, only looking at things he wanted to see, even keeping his hands behind his back to make sure he wasn’t tempted to reach for them. This is not a big deal for most people his age, but we know what an accomplishment this is for him. We simply measure success differently than most parents do. With that in mind, here is the newsletter I might write to review our year with a little tongue in cheek added because we try to find the humor in our situation.

This year, Alex made very good progress as he continued behavioral therapy. Despite having three different therapist changes in a matter of a few months (One moved out of state, the second one was promoted to a supervisory position, and now he’s working with the third one, who truly IS a charm.), Alex adapted nicely each time he found himself working with someone new. He has learned calming techniques to address his anxiety, and his therapists have been amazed that when he’s upset, he can count to ten not only in English, but also in Spanish, French, German, and (thanks to his second therapist) Turkish. By the time he finishes counting in all these different languages, he forgets why he was upset in the first place.

Despite all the various medications Alex takes, he is a trouper about swallowing all those pills four times a day. Moreover, he’s become somewhat of celebrity at the pharmacy, where the friendly pharmacists know us on a first-name basis. He’s like Norm on the television show Cheers, as they yell, “Alex” when they see him. I suppose they are pleased to see a frequent customer under the age of sixty-five for a change. Besides taking his medications nicely, he is also wonderful about cooperating for the regular blood tests needed to check the effects the medications have upon his system. When we tell him we are taking him to the lab, he eagerly hops in the car as though we were taking him to a sporting event because he thinks it’s fun to have blood draws. The kindness of the lab technicians where we take him regularly only adds to his enthusiasm for this activity most people dread.

After twenty-one and one-half years of being cavity-free, Alex finally had two small cavities that needed to be filled this summer. Because of Alex’s anxiety and sensory issues, his dentist opted to schedule this procedure under general anesthesia. Even though we had to get Alex up in the middle of the night so that we could report to the hospital, which is a hour away, at the scheduled check-in time of 5 A.M., he thought this was a great adventure because we were going to a city where he’d never been before. Thankfully, he came through the procedure nicely, and his favorite memory of the experience was watching stock market news on the television in his hospital room.

Aside from his renewed interest in the stock market this year, Alex has also enjoyed following gas prices, which have been at times a source of frustration for him (as they have been for most people). When he was younger, high gas prices would agitate him so much that we had to determine routes free of gas stations to avoid meltdowns in the car. This year, Alex finds following gas prices a pleasant pastime, especially when they are on a downward trend. He happily exclaims from the back seat, “Gas prices are lower!” In addition, he enjoys driving past a local gas station that has gone out of business, leaving an abandoned sign that advertises gas for nine-tenths of a cent, which he finds terribly amusing.

Although gas prices are cheaper this year, we did not go on vacation, as most families do. Because of Alex’s potentially unpredictable behavior, we once again opted for our typical summer of staycation, planning outings within a few minutes of home. Between visits to the Indiana Dunes, local parks, a nearby miniature golf course/arcade, grocery stores, the library, and other stores, we kept Alex busy and encouraged him to develop his social skills. He has become an expert at pushing shopping carts, to the point I’m thinking of having a bumper sticker printed that reads, “MY AUTISTIC KID CAN PUSH A SHOPPING CART BETTER THAN YOU CAN.” Unlike most of the customers at Walmart, Alex knows better than to leave his cart parked in the middle of the aisle, which is a social skill in itself.

Even though Alex didn’t make the honor roll, earn the team MVP, become Prom King, or perform a concert to a standing ovation, we are proud of him and all he has accomplished this year. Moreover, we are thankful for the many blessings we have enjoyed this year and the prayers God has answered. Every day, Alex continues to teach us the value of patience, reminding us to “wait and see,” and we have learned the importance of faith, hope, and love on this journey with him. My favorite part of the day, especially on the hectic days when patience is running low, is the quiet and peaceful moments saying bedtime prayers with Alex, who talks to God as his friend, believing and trusting that He will answer those prayers. May we all have Alex’s steadfast faith as we celebrate the birth of our Lord and Savior!

“May the Lord show you His favor and give you peace.” Numbers 6:26

Plan B

About a year and a half ago, we began searching for a day program for Alex so that he could develop more skills and independence as well as spend time with peers. After visiting two programs, we immediately knew which one we thought was ideal for him. The first day program, housed in a beautiful facility, offered a variety of interesting and entertaining activities we knew he would find engaging. Moreover, everyone—staff and clients—seemed to be enjoying themselves, and we thought that Alex would be happy there, too, because he really liked visiting there. By contrast, the second program did not seem to offer well-planned activities, and the facility just had a sad feel about it, making us feel sorry for the clients. During the brief time we visited there, Alex kept asking when we were leaving and when we could go home. Clearly, this was not where we wanted him to be. Recently, the agency that ran that day program had its group homes closed down by the state for violations. Sadly, their residents had to be relocated to new groups homes after many years, often far away from their families, or their families, some with elderly parents, took them home to care for them. Interestingly, Alex’s intuition was correct about not wanting to stay there even though they were quite eager to have him enroll in their program.

After deciding upon the day program we believed was best for Alex, we filled out all the needed paperwork to enroll him. At first we were told there was an opening for him, and then that invitation was revoked because of concerns about his history of aggression. Even though medication was keeping his anxiety and agitation under control, they wanted him to do his trial evaluation under one-on-one supervision with their staff. Moreover, they wanted to wait until a major construction project that would more than double their facility in size was completed this fall. Although we were disappointed that we would have to wait, we understood their reasons and thought that he would be given a chance this fall once the construction was completed. After the addition to the facility was finished, Alex’s case manager and behavioral therapist began inquiring about when he might be able to start his trial evaluation there, and they were given vague answers about his being on a waiting list. Again, they cited his past aggressive behavior, despite his behavioral therapist and case manager noting the improvements he has made in the past several months with medication and therapy. While we certainly understand their concerns for the safety of their staff and other clients, we are disappointed that his progress does not seem to be a factor in consideration. In addition, their agency has taken some of the clients whose agency was closed by the state. Although those new clients do have a greater need, I suspect this also pushes Alex farther back on the waiting list.

Since our original plan that Alex would be enrolled in our chosen day program this fall does not look imminent, we decided that we needed to come up with an alternative plan that will keep Alex moving forward in his progress, a “Plan B.” First, we asked his behavioral therapist to have her counseling agency complete a new behavioral assessment of Alex based upon his more recent behaviors since the first assessment was done eighteen months ago. She agreed that with the progress he has made a new evaluation would provide a better picture of Alex’s current behavior for anyone who works with him. In addition, we asked his case manager if we could come up with a new budget for his disability funds. Since he is not currently using funds allocated for a day program, we would like to use them toward more behavioral therapy and perhaps other supportive therapies, such as music therapy.

After finding out that this change of plans would be acceptable for his budget, his behavioral therapist and I began brainstorming ideas of ways we could use additional therapy time. Thankfully, his behavioral therapist Jennifer is wonderful with Alex and is available, willing, and eager to work with him during an additional session each week. Even though she has only been working with him for a few months (after the first therapist moved out of state and the second one was promoted to a new position), we feel a comfort level with her as though we have known her for years. As she and I discussed possible activities for Alex’s second session each week, we agreed that increasing his social skills by doing fun activities would be best. These Friday sessions that will begin in November will include me so that Alex gets used to not having either of our undivided attention. We have discussed playing games and going on outings to the library, restaurants, the bowling alley, and stores—all of which we hope will improve Alex’s social skills and his ability to function well in different settings.

Not only are we grateful that Jennifer is able to do additional work with Alex, but we are also pleased that she has taken on this new responsibility with genuine enthusiasm.  Moreover, Alex adores her and looks forward to seeing her every week; he is delighted that he’ll now get to see her twice a week. What a blessing to have her in our lives! While Alex will be developing his skills, we will continue to hope that eventually he will be accepted into our chosen day program. As I told his case manager when I proposed the changes to her, we hope that the increased therapy time will ensure that when the day program is ready for Alex, he will be ready for the day program. While I’m not always patient about waiting, I know that God has a perfect timing, and I’m really looking forward to the fun Fridays Alex, Jennifer, and I are going to enjoy in the meantime.

"Trust in the Lord with all your heart; do not depend on your own understanding.  Seek His will in all you do, and He will show you which path to take." Proverbs 3:5-6

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

A Week in the Life with Autism

This past week began Autism Awareness Month, and many people whose lives have been touched by autism have used this time to make others more cognizant of this epidemic. For parents of children with autism, awareness involves more than wearing the distinctive autism puzzle-piece logo or lighting blue lights. Autism awareness is a way of life for us. Yesterday I read an excellent blog entry written by an autism mom who detailed a typical day in the life of her family. [To read this article, click here.] Impressed by her devotion and her willingness to share what her life is really like, I decided to try and do the same. However, I got bogged down thinking about how much time we spend giving Alex pills and fixing food for him throughout the day, as well as helping him with tasks he cannot complete on his own. Instead of providing an hourly report as she did, I decided to write about the highlights of our past week so that others can see that having a child with autism—even an adult child, like Alex—entails planning, coordinating, and supervising in ways different from those of parents of typical children. With that in mind, here is a glimpse of last week with the Byrnes.

Saturday—We had a 10:00 appointment with Alex’s new doctor, who wanted to see him a month after his last visit to see how he was progressing with the supplements he had recommended. After I explained how we had gradually phased in vitamin D, gentian violet, probiotic with prebiotic, and vitamin C over the past few weeks, the doctor carefully examined Alex. Fortunately, the yeast overgrowth in and around Alex’s mouth has improved, but he still has some thrush and cheilitis. The doctor suggested increasing the doses of vitamin C and probiotic/prebiotic and gave us a prescription for the antifungal drug Diflucan. He also noted the acne on Alex’s face and recommended a progesterone cream to decrease the inflammation and prevent secondary infection. We were once again impressed with this young doctor’s enthusiasm about making Alex healthier and his compassionate manner.

Sunday—Alex seemed pleased with the contents of his Easter basket. Since he is on strict gluten-free and milk-free diet, we always have to be creative when it comes to treats for him. Fortunately, he is a fan of Kraft Bunny Mallows marshmallow bunnies, jelly beans, and marshmallow Peeps (specifically the blue bunnies), all of which are allowed on his diet. In addition, I found him some nice paperback books in the children’s nonfiction section of Barnes and Noble on some of his favorite topics: the sun, the moon, the earth, thunderstorms, and earthquakes. While I was at the bookstore, I also found a small "computer sitter" figure of Sheldon from The Big Bang Theory, which is one of his favorite television shows, and a street map of towns in Northwest Indiana, where we live. Of course, the last thing I grabbed—the street map—was his favorite gift.

Monday—I received a letter in the mail that elevated my blood pressure from Indiana Medicaid, who provides disability services for Alex. In a previous blog entry, I explained that they had sent us a letter in January threatening to cancel Alex’s benefits because they alleged that I had “failed” to send them his financial records. After several calls to them, they discovered that they had received the information I had sent in a timely fashion, but someone had forgotten to note that in his file. Fortunately, my organization skills and tenacity prevented his benefits from being cancelled. The letter I received this week stated that they had sent us a letter in January indicating his benefits were to be cancelled, and a class action lawsuit had been filed against them because they had failed to notify people properly. Because the letter was not clearly written, I had to read it a few times before realizing that they hadn’t actually cancelled his benefits, which made sense because they have been paying for services for him the past few months. However, to be certain, I logged onto their website, looked up Alex’s files, and discovered that he was still covered. While I was relieved that his benefits were still in place, I wasn’t pleased that they had me worried and that I had to double check to make certain his status was correct.

Tuesday—We took Alex to one of his favorite places, the Target Café, for a snack of potato chips and Sprite. Ed and I have decided that outings to the Target Café provide us with a nice break, as well, since Alex happily watches people come through the store, and an added bonus for him is when small children, whom he finds especially amusing, appear. With something tasty to eat and drink and a good people-watching view, Alex thoroughly enjoys himself and smiles the entire time he’s there. We’re pleased that something so simple and inexpensive makes him happy. Besides, Ed and I are also fans of the hot pretzels they serve there, too.

Wednesday—Alex’s behavioral therapist came for her weekly session with him. Before she arrived, I did my regular inspection of our main floor to make certain that the house looked nice before she arrived. In addition, I filled out his weekly behavioral report for her, noting any issues we had observed during the past week. As usual, I wrote that his primary weakness has been speaking too softly to be heard, which shouldn’t seem like a problem. However, as she has explained to us, not everyone will be as patient as Ed and I are about having him repeat himself. Consequently, we have been working with him to make his voice audible. In addition, she and I worked together on Alex’s newest ploy, leaving in the middle of his behavioral therapy sessions to go to the bathroom. I suggested that she not even mention the topic, as he was likely to obsess on it, and I closed the bathroom door to hinder his efforts to interrupt his session. Our plan worked, as Alex only tried to leave the session once, and I told him to go back because he did not need to go to the bathroom. I think he learned that two women could outsmart him any day of the week.

Thursday—Alex’s case manager who oversees his state disability benefits came to see us to complete his annual level of care survey. The state uses this information to assess what services and funding Alex should receive. To determine his eligibility, Ed and I had to answer several questions regarding his physical mobility, his self-care skills, his self-directional abilities, and his learning skills. His case manager helped us immensely as she was able to explain the nuances of the questions and provide examples of what kinds of skills the questions intended. As usual, Ed and I were in complete agreement on our answers regarding Alex’s strengths and weaknesses. After his case manager left, Ed commented to me that this process was a good news/bad news experience. The good news is that Alex qualifies for disability funding and services; the bad news is Alex has weaknesses that qualify him for disability funding and services.

Friday—Alex was delighted to have books arrive that he had ordered from Amazon using gift cards he’d received for Christmas. He had chosen a book on winning strategies for the dice game Yahtzee, a chart explaining how to bet on the card game blackjack based upon the odds of winning, and a trivia almanac with questions for every day of the year written by one of his heroes, Jeopardy champion Ken Jennings. While he was pleased with these books, he was a little disappointed that another book he ordered had not yet arrived. Because The Handy Science Answer Book is apparently out of print, we had to order it from a specialty bookstore. Although Alex will be thrilled when that book arrives, I will be even happier since I won’t have to listen to Alex ask me if the mail has come, when I think it will arrive, and where I think the book currently is in transit. I just hope he’s as enthusiastic about that book when it finally does get here.

As I reflect back on the past week, I feel thankful that we have found wonderful people to help us with Alex. From his doctor to his behavioral therapist to his case manager, these support people have guided Ed and me with their expertise so that we can help Alex reach his full potential. Now if that Handy Science Answer Book would hurry up and arrive, I would be even more grateful.

“Tune your ears to wisdom, and concentrate on understanding. Cry out for insight, and ask for understanding. Search for them as you would for silver; seek them like hidden treasures.” Proverbs 2:2-4

While We Wait

 

Recently, Alex has developed some new routines, and we’re still battling with an old foe. Since all of these begin with the letter t, I thought I’d lump them together this week. The new routines involve Times Square, the Target Café, and therapy, while the old foe is the summer plague of thrush.

As I have mentioned in previous blog entries, Alex loves to watch videos on You Tube. Although he mostly watches country music videos, he also likes to watch clips from television game shows. The past couple of weeks, he has wanted to watch videos from various years of Dick Clark’s Rockin’ New Year’s Eve where they count down the seconds until the new year as the ball drops in New York’s Times Square. Considering Alex’s love of time, calendars, and holidays, I suppose his fascination with watching this annual celebration makes complete sense. In addition, the narrator of these videos also tells what the temperature in Times Square is on that particular New Year’s Eve, which is an added bonus for Alex, who loves weather.  Even though he has watched some of these videos several times, he gets just as excited watching the seconds wind down and the ball drop as the crowds in the videos do when it happened in real time. Moreover, even though Alex and I like Ryan Seacrest as a host, we’ve found by watching these old videos that no one rings in New Year’s Day like the late great Dick Clark.

Along with watching the countdown of the final minutes of each year, Alex has also discovered that he really likes the Target Café. Lately, about once a week, he and I have gone shopping at our local Target store with my mom. Since Alex just likes going places, he doesn’t seem to mind browsing through the store with his mother and grandmother. As a reward for his patience and good behavior, my mom treats him to a Sierra Mist soft drink and a bag of Lay’s potato chips from the Target Café at the end of our shopping trip. Besides enjoying his snack, Alex seems to like sitting in the café and watching people go by. Last week, Ed and I took him to Target, and as we were nearing the end of our shopping, Alex started chanting something softly. Ed couldn’t figure out what Alex was talking about, but I knew what he was saying that he wanted—“Target Café, Target Café, Target Café.” Hence, Ed was introduced to the ritual of stopping at the Target Café at the end of a shopping trip.

The third new routine is therapy--behavioral therapy, to be more precise. We have done a variety of therapies with Alex over the years, including speech therapy, occupational therapy, sensory integration therapy, Floortime therapy, cranial therapy, visual therapy, music therapy, nutritional therapy, and chelation therapy. However, behavioral therapy is new for us because until about a year ago Alex’s behavior was mostly quite good. This summer, we began searching for behavioral therapists with experience in autism, and we were fortunate to find an agency in a nearby town that handles people with autism and that had openings for new clients. Finding a therapist with autism experience is tricky enough, and those who do have autism training often have so many clients they cannot take on any more. One of the blessings of Alex qualifying for state funding this summer was that behavioral therapy is covered by his Medicaid waiver services. Not only are we fortunate to have found a behavioral therapist who works well with Alex, but also the state pays for this valuable therapy.

When we started behavioral therapy in August, most of the work was spent assessing Alex’s behavioral issues. His therapist and her supervisor who also observed Alex and interviewed Ed and me felt that many of his actions were attention-seeking behaviors. For example, if Alex wanted our attention, he found it easier to grab our arm than to tell us what he wanted. After several weeks of observation and gathering data, his behavioral therapist developed a behavior plan. Now that the plan has been written, she has been able to focus on working with Alex one-on-one on a weekly basis at our home. Alex eagerly anticipates the sessions with his sweet and enthusiastic therapist Melissa, who also seems to get a kick out of working with him. While she develops social stories, plays games, and talks with Alex, I sit in another room and try to eavesdrop on their conversations. Apparently, Alex is funny during their time together because I frequently hear Melissa laugh in amusement at his comments. She seems to bring out the best in him because he has been remarkably cooperative and well behaved throughout their sessions. I suspect Alex is happy to have someone other than his parents and grandparents to spend time with him. We’re pleased that Melissa is helping Alex develop his social skills and that he enjoys working with her so much.

While the new routines have been welcome, the hanging on of the annoying fungal infection thrush has been frustrating. Alex was first diagnosed with a yeast infection in and around his mouth in June, and we’ve been trying to clear up the thrush and cheilitis ever since then with anti-fungal medication. After weekly doses of the antifungal drug Diflucan didn’t seem to be clearing up the infection completely, his family nurse practitioner put him on daily doses for two weeks. Although he seemed better, a few weeks later, the symptoms flared up again. Last Saturday, we took him to our local CVS Pharmacy’s Minute Clinic, where a very sweet and sympathetic nurse practitioner confirmed my mother’s instinct that he again had thrush and cheilitis. She gave him two more doses of Diflucan and recommended we take him back to our family nurse practitioner.

On Tuesday, we had an appointment with another family nurse practitioner, who understood our frustration with trying to get rid of the yeast overgrowth and concerns that for Alex’s well being. She decided to do a culture by swabbing his mouth, gave us orders to have a blood test done to see if, indeed, his candidiasis, or yeast infection, is systemic, and prescribed a month of daily doses of Diflucan. We were pleased that she took such an aggressive approach, which is what we wanted. Although we’re curious as to what the test results will show, we’re pleased that Alex seems to be responding well to the medication as his symptoms are improving. We pray that this run of Diflucan will rid his body of the yeast overgrowth that irritates his mouth and throat, making him irritable. Moreover, we believe that once the yeast overgrowth abates, we will see great improvement in Alex overall. Once again, God gives us patience as we wait for Him to do the true healing, but like the eager crowds in Times Square on New Year’s Eve, we can’t help but count down: “Five, four, three, two, one.”

“For I am waiting for you, O LORD. You must answer for me, O Lord my God.” Psalm 38:15