Decisions, Decisions

 

The average teacher supposedly makes approximately 1,500 decisions every day. Since the average parent raising a child with autism makes at least that many decisions daily, my many years spent in teaching provided excellent practice for being an autism mom. In making those choices, I rely upon common sense, past experience, research, mother’s instincts, and most of all, prayer. Although my supportive husband kindly and generously tells me that I always make the right decisions when it comes to Alex, I know that I make mistakes at times. However, I always strive to do what’s best for him, and I’m willing to make changes when the consequences of choices don’t go the way I’d planned. On the other hand, sometimes when things go awry, we are actually led to something that works out better than we had imagined.

The other day while changing the sheets on Alex’s bed, I decided to flip the mattress on his bed, something I do once or twice a year. As I turned over his mattress, I was shocked to discover a golf-ball sized hole in the underside, especially since the mattress is less than five years old. Pulling the mattress aside to get a better look, I found that his box springs had a corresponding hole, as well. Further inspection seemed to indicate that a broken spring had punctured the underside of the mattress and the top of the box springs. While I was thankful that spring had not poked through the top of the mattress and done harm to Alex, I had a fleeting fear that perhaps some animal had somehow gotten into his room, chewed his bedding, and made a comfy home there. If there were rodents in Alex’s room, I knew I was going to need backup, so I decided to call Ed upstairs and get his calm and logical assessment of the situation.

After inspecting the holey mattress and box spring, Ed understood my infestation concerns––despite their unlikelihood––and decided to get tools to investigate further. Armed with a flashlight and scissors to gain a better view of the damaged bed, he decided quickly that the culprit was the broken spring and not some crafty critter. At this point, I was wishing that I hadn’t decided to flip the mattress in the first place, but we knew we would need to get a new mattress and box springs for Alex immediately. As we anticipated, he was upset that we had taken his bed apart and worried that he would have no place to sleep that night. Despite reassuring him that we would get him a new bed right away and offering him one of our three couches, our bed, or the bed in our spare room as places to rest while he waited, Alex was not a happy camper.

Remembering that my parents had offered us months ago a practically new extra bed that they wanted to get out of the way, I decided this was the easiest solution. After a phone call to my mom, some measuring of Ed’s crossover SUV, and easing Alex’s concerns by telling him he was getting the bed from Grandpa’s t.v. room, we rapidly set the plan in motion. After Ed made two quick trips to my parents’ house, which is less than ten minutes away, and carried the new mattress and box springs upstairs, I hastily put new sheets on the bed, and Alex immediately and happily curled up in his new bed in the middle of the afternoon, as if to make sure no one bothered his new favorite spot. Moreover, he slept peacefully in his new bed that night, clearly unfazed by the changes that had occurred during the day.

While my impulsive decision to flip Alex’s mattress created some brief unrest, thanks to some quick thinking, my parents’ generosity, Ed’s agile furniture moving, and Alex’s willingness to accept change, we worked together to resolve the problem. Furthermore, all of us can rest easier knowing that Alex is no longer sleeping on a defective mattress.

In addition to the new bed, we made another change that could have impacted Alex’s sleep for better or worse. During our regular six-month appointment with Alex’s psychiatric nurse practitioner last month, she recommended that we start gradually weaning him off one of his anxiety medications. Knowing that Ed would be on spring break this month, I had decided not to make any changes in Alex’s medication until then. Even though Alex has responded quite well to medication reductions, I’m always cautious about the timing of these changes. In case Alex responded to this medication change negatively, I wanted to have Ed at home.

Last weekend, I thought we were ready to start decreasing the medication, but before we made the change, Alex was acting a bit edgy. Seeing this as a sign that he wasn’t ready for any changes, I decided that we could wait until Ed finishes his semester in May. A few days later, I realized why I had mother’s instinct to wait on reducing that medication. On Monday, we received tests results indicating that another one of Alex’s medication levels is too high, so he will have to take a lower dose of it. Remembering the valuable lesson Alex’s childhood doctor taught me about only making one change at a time so that we know the likely causes of any reactions he may show, I knew my decision to delay making changes with the other medication was the right one. Instead, we will allow Alex’s body to adapt to the lower doses of the medication shown to be too high and will wait a few months before adjusting the other one. Fortunately, Alex seems to be adapting quite well to the lower dose of the medication that tested too high.

While the parental responsibility of making decisions for a child, especially one with special needs, can be daunting, we keep doing our best to choose wisely. Using all our available resources, including seeking advice from the wonderful professionals who work with Alex, we hope that we are doing the right thing every time we are faced with a choice. More importantly, we trust that God is leading us every step along the way––in decisions big and small––to make Alex healthy and happy and to keep him safe. Believing that God knows Alex’s every need reassures us that He will guide us as parents and that He will make certain every good plan He has for Alex’s life will be fulfilled.

“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

Making Choices

 

Last week we encountered a situation where at first we thought Alex was having a setback, but after some analysis, we realized that he was actually showing signs of progress. On Tuesday while working with his behavioral therapist, he became agitated, and we tried to get to the root of his anxiety by asking him questions. This seemed to aggravate him more, as he became increasingly obsessive about what he was going to do on Thursday evening. Probably trying to escape the probing questions of two concerned females, he kept leaving the room and had to be coaxed back so that we could figure out his problem to help ease his clearly troubled mind. All the various calming techniques we’ve taught him didn’t seem to be working, and he was frustrated.

Finally, I resorted to my English teacher mode and helped Alex break down the internal conflicts that seemed to be troubling him. While he was looking forward to Thursday evening, he realized that he had two choices that really appealed to him: watching the new season of American Idol on television or going to a Valparaiso University women’s basketball game. Even though he was eagerly anticipating both events, that created conflict for him because he could not do both at the same time. He had to make a decision between two equally appealing options.

Of course, I thought I had the ideal solution: we could tape American Idol while we were at the basketball game, and he could watch the recorded show later. However, my suggestion didn’t seem to solve the dilemma because he then became upset about when he would be able to watch the taped show. It would be too late to watch it Thursday evening after the game, and he didn’t want to wait until Friday. He found himself in one of those situations where he was simply going to have to make a decision, and he didn’t like it.

While I was concerned that his increased anxiety and OCD over a fairly simple problem indicated a setback, I realized that we had put him in a new situation. For many years, we rarely took Alex places because he became overwhelmed and didn’t behave appropriately. In the past few years, he has learned to deal with sensory overload and has developed appropriate coping and social skills so that he can go to restaurants and concerts and sporting events. Being able to go to a college basketball game has become an option for him in the past year, something that wasn’t on the table before.

In addition, we rarely asked Alex to make decisions. Ed and I made choices for him in his best interests, and he went along with our judgments, trusting us. We chose for him because he was too immature to weigh his options and because he never really seemed to have opinions on some things. When we did offer options, he would earnestly ask, “Which would be good?” If we told him both choices were good, he would sometimes become agitated and demand to know what the better choice was. To avoid a meltdown, we just avoided the choices issue by telling him what we were going to do.

As Alex has matured and made progress in his ability to cope with a variety of situations, we have encouraged him to think for himself, which has meant that he has had to consider the pros and cons and to make decisions. For example, we give him two choices of restaurants on Saturday evenings, and he usually can easily decide the one where he wants to eat. Occasionally, he will revert to his, “Which one would be good?” question, and we then guide him to ask one of us which restaurant we would like, teaching him the courtesy of allowing another person to get his or her choice.

Throughout his life, Ed and I have structured Alex’s days so that he has the routine he craves, and now we know that we must allow him the freedom to make his own decisions. This newly found freedom was the source of his anxiety on Tuesday. However, with the guidance of his behavioral therapist and me, he was finally able to calm down, weigh his options, and make a decision. He wanted to forgo the basketball game, stay home, and watch American Idol. After all, as he reminded us, there was another basketball game scheduled for Saturday afternoon, and we could go to that one.

As I watched American Idol with him on Thursday evening, he clearly had made the right decision because he was enthralled watching the contestants sing and even singing along to familiar songs. His choice was further confirmed after we found out that our basketball team had lost Thursday night. Moreover, he thoroughly enjoyed yesterday’s basketball game, which our team won handily. In fact, he probably enjoyed the game even more since it was the only one he attended this week, making it more special for him.

Yesterday afternoon, he came to me with another decision to make as he discovered that next month the last V.U. men’s basketball home game is scheduled at the same time as the Daytona 500 race that kicks off the NASCAR season. This time, I reigned in my micromanaging mother tendencies and allowed him to weigh his options without insisting that he tape one sports event or the other. I simply told him that I would be staying home to watch the race and that his dad would be going to the basketball game; he could do whatever he wanted. After thinking for a few minutes, he calmly decided that he wanted to watch the NASCAR race. Even though he seemed content with the decision he had made on his own, I reminded him if he changed his mind in the meantime, that would be fine. However, I’m betting that he sticks with his decision.

As parents, we want our children to be independent and make their own decisions. However, we may forget how hard it can be for our children to make those choices at first because we have always either told them what to do or guided them when they did need to choose. Because it has taken longer for Alex to begin his independence, we are just now seeing the struggle of breaking away from us so that he can enjoy the freedom of being a young man while also accepting the responsibilities of the choices he makes on his own. Although his choices this week between a television show and a basketball game were not terribly important, they gave him practice for more pressing decisions in life. Now we just have to step back and let him begin to take control so that he can become all that he is capable of becoming, and we know that God will guide him along the way.

“You will succeed in whatever you choose to do, and light will shine on the road ahead of you.” Job 22:28

Decisions, Decisions

 

Last evening during a Moms’ Night Out with two of my younger friends, who are currently on maternity leave, we found that the majority of our conversation revolved around our children. With our kids safely at home with their fathers, we were relieved of mommy duty for an hour and a half, but still foremost in our minds and hearts was the well being of those children. We discussed feeding, sleeping, and keeping our kids healthy, along with the dilemma of returning to work or not. Our shared devotion to our children binds our friendship now even more than our initial bonds of a shared workplace. We can support and understand each other because we are in similar situations, and a primary concern we share as mothers is making the right decisions for our children.

Of course, my friends are new to motherhood and responsible for the care of infants while I have been parenting for nearly twenty-three years and am still responsible for an adult, which brings challenges not unlike those my friends are currently facing. Like them, I must make sure Alex eats properly, gets plenty of sleep, and gets proper medical care. Most parents of young adults have relegated these decisions to their independent children, but autism impairs Alex’s ability to make important choices on his own. Sometimes I must even guide him in rather simple ways, such as telling him that bologna, orange juice, and cookies are not a good snack combination, especially right before bedtime.

On one hand, I’m glad that we still have the power to protect Alex that parents of other children his age do not. He can’t drive a car, so we don’t have to worry about him driving recklessly. He isn’t in college, so we don’t have to be concerned as to whether he’s keeping up with his studies or not. He doesn’t date, so we don’t have to worry about someone breaking his heart. While keeping him safe is nice, I wonder if he misses the rites of passage other people his age enjoy.

On the other hand, since Alex can’t make important decisions for himself, we feel a tremendous sense of responsibility to make the right choices for him. In true concerned mother fashion, I often find myself questioning if we’re doing the right thing. In some aspects, I feel totally confident, such as managing his disability funds. Appointed by Social Security and the state as Alex’s authorized representative, I allocate his money as carefully and fiscally responsibly as I manage our own, finding the best deals and never wasting a cent. Legally assigned by Alex as his health care representatives, Ed and I make sure that Alex gets the best medical care to keep him healthy, just as we always have throughout his entire life.  However, when it comes to deciding what support services he needs, I find myself weighing all the options, trying to determine what is best for him, hoping to make him more independent in the long run.

Indeed, realizing Alex’s need for greater control of his own life, I have tried to give him options so that he can learn to make decisions. Even in seemingly small choices such as whether to wear the blue shirt or the red one, what to eat for lunch, or what to watch on television, I want him to communicate what he wants. When presented with a choice, trusting my judgment, he will often ask, “Which would be best?” After reassuring him that no answer is wrong, he can usually pick one of the choices.  Sometimes he tells us that it’s “a tough decision,” weighs his choices, and then decides. However, I understand his dilemma because I often wonder myself which would be best.

In the times when I doubt myself, I have to look at the successes to remind myself that we do what’s right for Alex. After his recent oral surgery went amazingly well—much better than anyone could have anticipated—we looked back on all the steps we made along the way to get to that successful recovery. Not satisfied with the recommendation by Alex’s dentist to wait to remove his decaying upper twelve-year molars until they were bothering him and by his recommendation of an oral surgeon with a poor reputation, I decided to take him to my dentist, whom I trust completely. He recommended removing Alex’s wisdom teeth at the same time and referred us to an experienced oral surgeon. The skilled oral surgeon not only successfully removed the teeth that were causing problems, but he also took various precautions to prevent complications, namely pain, bleeding, swelling, dry sockets, and infection. Consequently, Alex came through a rather complicated procedure without any problems. Moreover, he was deemed a “great patient” by the oral surgeon’s staff. Because everything went smoothly, Ed and I were confident that we had made all the right decisions for Alex.

When we must weigh options for Alex, Ed and I discuss all the potential benefits and problems, and we consider how well we know Alex and how he will likely respond. Along with relying upon our own careful considerations, we rely even more heavily upon prayerful consideration. We know that God has a plan for Alex, and when we aren’t certain what is best for him, God knows. In times when I find myself puzzled as to what choices we should make, I pray for guidance, and we have an amazingly clear sense of what we should do. That Ed and I always reach the same conclusions, guided by our shared devotion to Alex and our shared faith in God, makes moving forward with these choices less daunting.

This week, Alex’s quarterly meeting with his support team convenes, and we will discuss plans for the next three months regarding his services. In preparation, Ed and I have considered various available options, Alex’s progress and his current state, and what we believe will help him most. At this point, we feel that the best way to move him forward is to make no changes because he is doing well with the combination of behavioral, recreational, and music therapies, along with spending one afternoon with his respite care “friend,” and with the various family outings Ed and I plan for him. While others may question our choices, we know that our primary motivation is doing what’s best for Alex, and we also know that God, who loves Alex even more than we do, guides our decisions. As a result, we feel confident in knowing “which would be best.”

“Wise choices will watch over you. Understanding will keep you safe.” Proverbs 2:11

Communicating Choices

Over the weekend, the three of us were going out to a restaurant for dinner. Since Ed and I had no real preference about where we would eat, we turned to Alex and asked him to choose the place. This incident has significance on various levels. A) Until recently, Alex’s behavior has been such that we wouldn’t consider taking him to a restaurant unless we were picking up take-out food and bringing it home. That he can dine in restaurants and act appropriately is a testimony to the improvements he’s made in the past several months. B) The advantage to having an only child is the use of said child to make decisions when the parents cannot or choose not to do so. He doesn’t have to compete with siblings who may not like his decision; therefore, he gets the final say when we allow him to make a choice. C) Another indication of progress in the past few months lies in Alex’s ability to make choices and to communicate them clearly. D) All of the above are true. The answer, of course, is D.

Not long ago, Alex was driving us crazy with his inability to make decisions. I’m not certain whether this was an issue with maturity or language, but he had great difficulty choosing between alternatives. For example, if I gave him two choices of what he could have for lunch, he would ask me, “What would be better?” When I assured him that both were equal, he would become agitated and repeat the question as though I had ignored him the first time: “WHAT WOULD BE BETTER?!” Rather than having him upset, I would simply suggest one of the choices, and that would satisfy him. I realized it was better not to present him with any alternatives and just put food on the table, so as to avoid any confrontations about what was preferable. This extended to his clothing, too. If I asked him whether he would rather wear a red shirt or a blue shirt, he would immediately ask, “Which is better?” Even though red is his favorite color, he still seemed unable to select a shirt. Again, I decided that having to make decisions was causing him unnecessary stress, so I would just pick out his clothes for him. Coming up with something to do in his free time was more difficult for him because he had to choose between many alternatives, not just two. Alex would come running to Ed or me and ask, “What do now?” This was a loaded question since giving him ideas about what he could do presented him with another challenge—choosing one of them. We learned quickly to suggest only two activities and then had him make the decision by flipping a coin, which he thought was fun. This idea worked well until he decided he didn’t really like either of the choices we offered him. Then I came up with a list of five of his favorite activities: reading, computer, television, handheld electronic game, or video game. After assigning a number to each of these, we would have him roll a die to see what number activity he should do. If he rolled a six, he had to roll again. Since Alex has a fascination with games of chance, such as dice games and slot machines, he liked this method of selecting what to do in his spare time. He was satisfied that probability determined his choices instead of having to do it himself. Interestingly, once the category was narrowed for him, he was able to choose within it by picking a television show to watch or a book to read or a game to play.

As with many situations, once we found a solution, the problem disappeared. Fortunately, Alex overcame his difficulty in making decisions. Now he never asks us, “What do now?” because he easily finds things to entertain himself in his spare time and doesn’t need a coin to flip or dice to throw to determine what he should do. Not only has he improved his decision-making skills, but he can convey what he wants more effectively, as well. A couple of weeks ago, we were having dinner at Panera Bread, and Alex seemed to be done with his meal. When Ed picked up our plates to put them away, Alex immediately grabbed his plate to let us know that he was not finished eating. I suspect that he wasn’t as interested in eating what was left on his plate as he was in letting us know that he really wanted to stay. Nonetheless, he kept his plate longer through his decisive action. Another indication of his improved ability to communicate his choices lies in his ability to respond to yes/no questions. Recently, my mom asked Alex near the end of their daily phone conversation if he had anything he wanted to tell her, and he responded with a definite, “No!” Similarly, in a conversation with Ed a few days ago, after asking Alex several questions, Ed gave Alex the opportunity to ask him a question. When Ed asked Alex if he had any questions for him, Alex replied with a resounding, “NO!” On the other hand, when presented with choices he does like, he eagerly responds with a strong, “YES!” No longer needing coins to flip, dice to roll, or suggestions from us, Alex can now make decisions without anxiety and can clearly convey them, thus displaying maturation through his increased independence.

“Who are those who fear the Lord? He will show them the path they should choose.” Psalm 25:12