{Karlton Bontrager}

The date July 4 has special meaning for our family beyond Independence Day for the United States. That is the date in 2002 (east of the International Dateline, at least) when Karlton had his snowboarding accident.

The last entry on the website announced Karlton’s seizure in 2004. He had been fortunate not to have any seizures after the traumatic brain injury, and he has been fortunate since then not to have had any more. We have many things to be thankful for.

In the meantime, Karlton has become a serious student. Before the accident, learning came to him easily. In fact, his philosophy of living life to its fullest did not allow time for dedicating himself full-time to studying. There was too much else of life to experience at the same time. Yet he did well academically.

Now the picture has changed. Karlton invests hour after hour in studying. Despite his concerted efforts, he has often had to content himself with low, just-passing to average grades. He continues to have his eye on a degree in Occupational Therapy, and that requires taking anatomy and physiology—two courses that are renowned for being challenging. Yet he has mustered phenomenal social and academic supports to get him through. His advisor at the community college arranged for the people in his study group for the anatomy class to be in the same section of the physiology class the following semester so they could continue the study group. They spent hours studying together, quizzing him on the concepts, and putting up with his outrageous humor. He had the same professor for both courses, and that man was likewise outstanding in his patience, persistence, and good humor.

Karlton has been accepted into an Occupational Therapy Assitant program that begins in September. He’s attempting to get a headstart on the coursework by taking kinesiology this summer. He reports that kinesiology is even more difficult than either anatomy or physiology were. But again he has the benefit of a patient professor and a supportive tutor.

Academics have not been Karlton’s total life. Somehow he manages to get around even though he still cannot drive. He returned to Hamilton College (Clinton, NY) for his five-year reunion, went to New York City to assist in a fraternity induction, and has been to several friends’ weddings this year. He also flies periodically to Los Angeles to be with family and friends there. He completed a training and became certified in medical interpretation. And he’s managed to set up his own pottery studio. After pooling all his resources to buy a wheel, he was able to get an exceptionally good deal on a kiln. His mother had a porch remodeled into a studio, so he’s all set to throw pots again.

Three years after his accident, Karlton continues to be an inspiration and a challenge. His spirits and determination are high despite the limitations in learning and executive functioning that he’s had to grapple with. He has been dismissed from all therapies, and he’s going strong. He aims to become certified in Occupational Therapy so that he can work and live independently again. Who knows, he may end up back in New Zealand again, this time working as an OT at ISIS!

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This meeting was called to renew Karlton’s plan for therapies. Such meetings occur every three to four months.

The director of the adult program began the meeting. She stated that Karlton has evidence of growth, insight, and direction during the period of the latest plan (that is, since 12/18/03).

The occupational therapist (OT) reported that one goal of the plan had not been met—that of documenting and carrying out a regimented exercise program three times per week. Karlton has recently acquired a Day Timer, a personal organizer as per her suggestion. The OT plans to work with Karlton in using the Day Timer to accomplish the exercise and practice goals. The OT noted gains in other areas. One of those was increased fluidity of movement as well as stability of the proximal muscles in the shoulder. She commented on Karlton’s social interactions in the group that eats in restaurants on Fridays. She stated that his appropriateness in that context “has skyrocketed.” To a question about the benefits of repetitious exercise, she responded that Karlton would not benefit from passive exercise. He needs to initiate action—not be acted upon. She further stated that there is no concern about awakening muscles within a limited amount of time. All of Karlton’s muscles and muscle responses are there. He just needs to learn to use them in new ways from how he did before.

The speech and language therapist (SLT) stated that Karlton is becoming more self-aware. She cautioned that crises such as depression can result. This self-awareness is in sharp contrast to his former apathy. Karlton is now doing more on his own. He initiates requests for help in certain areas. At the community college, for instance, he took the initiative in arranging for one-on-one tutoring in his coursework. The SLT sees as goals his continuing to work on initiating, planning, time management, and directing behavior toward what he should do versus what he would like to.

It was with the SLT’s assistance that Karlton organized his Day Planner. Together they have been focusing on plotting his time on Mondays and Wednesday, the days that Karlton attends the community college. His Mondays are long because class time is followed by work in the laboratory. The SLT recommended doing grounding activities such as range of motion exercises when he returns home. Those activities contrast with the focusing and cognitive work he does at the college.

Time management has been a principal concern in speech and language training. A goal is for Karlton to get to bed earlier. He often overlooks the goal and time itself when he is on the computer. He has begun using a kitchen timer to limit his computer time to one hour. Occasionally Choy-Lang, his mother, has had to lock the door to the room where the computer is stored because Karlton has not been able to discipline himself. Yet he is becoming more responsible in this area.

Money management is another area for attention. At the moment, Choy-Lang controls his check book and credit card. The SLT stated that with so many other changes going on, now is not the time to institute a focus on money management.

The physical therapist did not attend the meeting. She filed a written report that had high praise for Karlton’s “brain to feet reprogramming,” as she referred to it. She described Karlton’s gait has having greater symmetry, trunk rotation, and fluidity. He can balance on his left foot for about 15 seconds at a time. She has had him hopping and running in place on a trampoline. Hopping is a precursor to running, and Karlton has succeeded in hopping when he is on solid ground as well.

The case worker from the Office of Rehabilitation Services has made Karlton aware of the field of medical interpretation. The next training for that area will begin in January. In the meantime, he encouraged Karlton to consider taking Spanish courses at the community college or through an extension program. A course in medical terms for Spanish speakers might be ideal.

The meeting ended on a very positive note. Karlton continues to make significant progress even though the rate of progress has slowed. I feel most encouraged by his change in attitudes in terms of initiation, social appropriateness, and budgeting his time.

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This meeting was called to renew Karlton’s plan for therapies. In a sense, it seemed to have marked another turning point for Karlton’s recovery as well.

The speech and language therapist started the meeting by stating that the staff had recently begun to question whether Karlton valued the individual therapies. Then, in the previous week, he had made statements indicating the value he saw in his steps to recovery. In her opinion, he has turned a corner in terms of body awareness, that is, in terms of what needs to be done and why as well as in carrying the information over into other areas.

The occupational therapist was next to speak. She commented that Karlton is making slow, steady progress with his left hand. He needs less prompting to remember to use his left. Moreover, he knows all the exercises and theory involved. When highly motivated, he can initiate appropriately. At other times, however, he is much less effective. In the weekly excursions to local restaurants, he now successfully inhibits inappropriate comments. Her goals for his continued occupational therapy are initiation, follow through, and time management.

The physical therapist reported on using electric stimulation or e-stim on Karlton’s ankle to activate and exercise the muscles. She reported that he is beginning to accept the fact that his stride may never be what it once was. At the same time, Karlton can carry through with walking as proscribed when he is consciously paying attention. But his attention easily wanders, and he needs prompting. Posture is another area that needs continued focus. Karlton tends to lean to the left. The physical therapist?s goal is to make the conscious unconscious. That is, to help him to form new habits in posture and walking so that he no longer needs to focus such concentrated attention on those areas to carry them out correctly. Her continued emphasis will be on walking, running, and cardio-vascular exercise, including jumping.

The discussion again came to the speech and language therapist. She noted the progress Karlton has made in the cooking group. He is now using his left arm more functionally, generalizing the instruction he has had from specific situations to more areas of his life. He is now aware, she reported, of the need to involve his left in all kinds of activities. She also praised Karlton’s decision to take a course at the community college this past fall semester. She saw that as a practical, concrete opportunity to practice many of the goals she has been focusing on. In particular, he has had to use study strategies. At times, she stated, his attention shuts down. Yet he is becoming more aware of when that occurs and is using strategies in note taking to accommodate for that. She emphasized his need to “practice mindfulness.” By that she said she meant requesting assitance in specific areas.

The next meeting with the Sargent staff should be in mid- to late February.

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This is a year of anniversaries. In July we recalled Karlton’s accident and the impact it had on each of our lives. This week we mark a year since Karlton returned to the United States on November 18, 2002. How proud he was, standing tall with a look of accomplishment in his eyes as he walked on his own through the airport.

His arrival States-side was followed by meetings with a new neurologist, representatives from social services agencies, and the staff at the rehabilitation program where he eventually became enrolled. How much time we spent waiting to see one person or another, how many forms we filled out, and how many times we answered the same questions! Gradually the pieces fell into place, and we began to see how Karlton’s needs fit into the system. Little by little, the system began to work in his favor.

Karlton did not begin therapy until January, and then it was only three times per week. That seemed dreadfully inadequate to his family. In contrast, it was much too much for Karlton. He preferred not to have to go to therapy at all!

Now, a year later, Karlton has come so far. Two weeks ago his neurologist commented with amazement about the remarkable progress he has made. His latest skill is running. Though his left side maintains a rhythm somewhat independent of that set by the right, Karlton is nonetheless able to run; a feat that he feared he would never again accomplish.

As we in the United States celebrate our holiday of Thansgiving, Karlton and his family have so very much to be thankful for. We appreciate the tremendous support and encouragement we have received from so many friends and relatives. We wish you all a happy Thanksgiving.

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In September Terry called for a meeting because there had not been any meetings since just previous to Karlton’s experience at Shake-A-Leg. We in the family had witnessed tremendous improvement, and Karlton had evidenced a renewed interest in finding a job. So one purpose of the meeting was to get feedback from the therapists at Sargent concerning his present status. Another purpose was to explore the possibility of changing funding back to the Office of Rehabilitation Services so that Karlton could receive vocational counseling.

Karlton’s enrollment in the course at the local community college began after the meeting date was set. Because he did poorly on the first weekly quiz, the speech/language therapist helped him plan a schedule for studying. That included 2.5 hours of study per day. Karlton earned 94% on the second quiz, and so their efforts paid off. At the same time, it became apparent that he could not devote so much time to studying and hold down a job as well. Thus, the issue of vocational counseling had become less of a focus for this meeting.

The meeting was scheduled for 10:30 at the Sargent Rehabilitation Center. The program director called the meeting to order.

The Speech/language therapist spoke first. She talked about focusing on practical problem solving. She mentioned that Karlton is great at setting goals, but he often overlooks planning the steps necessary for reaching the goals. A case in point is the fact that Karlton would like to start a meditation group at Sargent. Whereas he was able to visualize the end result, he needed guidance in thinking about planning for location, time, leadership, etc. The speech therapist commented on Karlton’s reduced resistance to accepting the fact that he must now accomplish goals in different ways than he did before his accident. He displays greater flexibility, improved insight, more responsibility, and his humor is less biting. Moreover, he has reduced the delay between receiving a message and initiating action.

The speech therapist complimented Karlton on advocating for himself. She sited the incident when RIde, public transportation for the handicapped, dropped him off at one college campus and then a few hours later went to a different campus to pick him up. Whereas the Sargent staff could have intervened to report the problem, Karlton dealt with the situation himself and did so diplomatically.

The physical therapist spoke next. She suggested that Karlton could do exercises at home to complement his regimen at Sargent. For instance, he could work on abdominal muscles and strengthening his left shoulder at home. At Sargent, then, he would have more time to work on balance, jumping, and running. The physical therapist has noted a tremendous change in attitude. Karlton has greater acceptance of how his body works. Sometimes he lacks focus, but she was generally very pleased with his work and his progress.

The occupational therapist affirmed the comments made by the others. She is working with Karlton on using his left arm. Lately, she has been having him throw magnetic darts. She has been impressed by his persistent attempts despite failure so far to be successful. She noticed that he is not nearly so persistent on tasks at which he has success. On those, he becomes easily distractible, wanting to change the CD that is playing, or doing other off-task things. The occupational therapist commented too on Karlton’s behavior during the Friday excursion into the community, the outings to local restaurants. She noted that he is less ready to educate the other members of the excursion about their infractions, and he is able to defer comments until another time when it is more appropriate to discuss them.

All in all, the meeting had a very positive tone. Karlton was complimented on making significant progress in a number of areas. Whereas strength and agility have improved noticeably, so have changes in his attitude and his ability to get along with others.

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It was exactly a year ago today that we got the news of Karlton’s accident. What an awful day that was. And how long we had to wait to get any concrete information about his condition. At first there was only a glimmer of hope; then a ray. That was followed by a series of accomplishments—opening his eyes, registering recognition, sitting up, swallowing food, sitting on the side of the bed, standing with assistance, expressing himself in writing. On and on the list goes. What a terrible yet wonderful year this has been.

When Karlton arrived in Providence, I wondered if it was wise to leave the computer in the study on the second floor. To check his email he would have to climb up the stairs and then down again. Watching him on the stairs made me very nervous. But he assured me that to date he had never fallen, and he wasn’t about to begin falling now.

Climbing the stairs was hard for him, but email had an attraction that he could not resist. With time he became more sure of his step, and I learned not to hold my breath each time he went up or down. One day he had something to show me. He could go up the stairs by alternating his feet. Not too long afterwards, he was able to go down the stairs the same way. Thanks to hours and hours of therapy and concentrated practice, his gait has become steadier with less swaying from side to side both walking and climbing.

In retrospect, it was a good thing to leave the computer on the second floor. It gave Karlton a therapeutic challenge to overcome within his everyday activities. The latest news is that Karlton now has enough muscle control in his left leg and ankle to make optional the wearing of the L-shaped AFO brace.

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It was not quite a year ago that I wrote updates to the website almost daily. Once I returned to the United States, however, I got caught up in the busy-ness of a new job and, later, having Karlton at home. There was so little time to write. But now the school year has ended, and Karlton is in Newport, RI attending the Shake-A-Leg camp. Once again I have time to breathe and to write. Perhaps as I recount anecdotes from the past year I can paint a picture of what it is like to live with someone who has a traumatic brain injury.

Shake-A-Leg began on Sunday, June 15th, 2003. Choy-Lang, Louis, and I helped Karlton unpack his bags, putting his possessions into the drawers and shelves in his dormitory room. The next day, he telephoned to ask if I knew where his sunglasses were. He was going sailing, and he needed his sunglasses. Unfortunately, I was not immediately available, and he ended up sailing without them. When we finally did talk, I suggested that he look in the top drawer of the chest of drawers. That was indeed where he found them.

This incident is frustratingly familiar. At home, I would put his mail or other items at his place at the kitchen table. He might sit there to eat a meal two or three times, never noticing the items until they were pointed out to him. Likewise, in the dorm he looked through all the drawers repeatedly. But he could not recognize his sunglasses until someone told him where to look for them.

Since November when he came to live with Louis and me, Karlton has gotten better at finding the things he is looking for. With time, he has established usual places for keeping things, and he knows to look in those places first. He also works (though inconsistently) to limit the clutter around him, especially on his bed and desk. So he now loses things less quickly and for shorter periods of time. But in the new environment of the Shake-A-Leg dorm, he returned to Square One again. That is, he had no sense of organization in this new room. Yet I am encouraged that he has called less frequently for help in finding things. He is apparently developing that sense of organization much more quickly this time than he did in November.

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On Tuesday January 6th Karlton renewed his therapy at the Sargent Rehabilitation Center in Warwick, Rhode Island. He reports that he is relieved finally to be participating in therapy as an out-patient. We are all thankful for the degree to which he has improved, especially in as little time as it has taken.

At Sargent, Karlton began with a lengthy and comprehensive ten-day evaluation. He completed that on Wednesday last week, and we met with several of his therapists on Friday, January 24th to discuss the results and formulate a plan. The occupational therapist, physical therapist, speech/language pathologist, and vocational counselor all praised Karlton’s progress to date. They noted decreased processing speed and that he struggles with self-monitoring, often asking if he has all the pieces he needs.They also suggested goals that he should work toward with their assistance. These included safety concerns related to body awareness on the left side, protecting his joints by making his walking and static postures more natural, and learning to be more tolerant of the speech diversity of others (hearing non-standard English usage, as many of you know, compels him to correct it). Several therapists stated intentions to include photography and possibly even the potter’s wheel in their activities. The end result of the meeting was that Karlton was approved to attend Sargent in forty day increments, three days per week starting Tuesday, January 28th.

An accomplishment that we’ve noted at home but that was not mentioned at the meeting is his improved ability to climb stairs. Recently he began alternating feet as he climbs, using only one foot per stair step. In addition, he is gaining greater use of his left hand. In the kitchen one evening, he held four tomatoes in his right hand and used his left to turn the knob and open the door to go into another room. He can also move his index and middle fingers independently, though it’s a real effort for him to flip someone off using his left.

This weekend Karlton got together with some of his Boston friends, many of whom he hadn’t seen in a long time, and others not since he graduated from college. The Super Bowl was their reason to get together (Karlton was disapointed the Patriots had failed to even make the playoffs). This marked the second time he has taken the train by himself from Providence to Boston. He is pleased to be back among friends, especially his closest friend Ethan, to whom Karlton attributes much of his interest in Rugby.

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Finally, after a 5 1/2 month stint at the Dunedin hospital system, Karlton was deemed fit for society and released (some of us know better, right?) Months of rehab, therapy, and determination culminated in an effortless flight from Dunedin Airport through Auckland across the Pacific Pond to LAX in beautiful California. (Karlton reports that LA in winter is terrifically warmer and more comfortable than Dunedin at any time of the year.)

Once States-side, he reunited with his elder sister Jennifer. For quality control purposes, they checked out a local Japanese restaurant where Karlton was formerly employed. It had been a long time since Karlton was able to enjoy the taste of fine sushi. Alec, Jennifer’s husband, later returned from a business trip, further enhancing the reunion night for them all.

Karlton is extremely pleased to be back in the USA, the country in which he has grown, been educated and spent the majority of his life. He reports that previous to the accident, he never considered the United States to be terrific, but his newfound perspective since this ordeal has turned his mindset to believe that indeed, the United States is a good country to be in, especially if one has his or her roots set within it.

Due to the onset of the holiday season, Karlton had only a short time in California before he had to awake at four AM to catch an early flight to Rhode Island, the state in which his parents now reside, and also where he attended high school. Karlton was accompanied by an escort nurse Jackie, a most humble and helpful Scottish nurse from Australia, who was consistently mindful of Karlton’s needs and wishes, even waking at four AM as well to catch the early flight to Rhode Island with Karlton.

What a world of difference between who Karlton was physically at that time and who he’s been forced to become. Nevertheless, Karlton is cognitively much the same as he always has been. On a positive note, however, the experiences Karlton has been through have turned him into a more appreciative and often more thoughtful person, as several family members have attested.

Two days after Karlton reached Rhode Island, both Jennifer and Alec arrived as well, coming to celebrate Thanksgiving. This was an extremely joyous occasion, and we enjoyed each other’s company. Karlton was nearly worn down by all the stimulation. He had a neurologist appointment the day before Thanksgiving, and a meeting with a counselor in the office of vocational rehabilitation the day after. Over all, Karlton performed well and maintained high spirits. He was very pleased by the high praise the neurologist offered regarding the care he received in New Zealand and the amazing progress he has made.

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Today is Karlton’s last day in New Zealand. Given that New Zealand is 18 hours ahead of the Eastern Time Zone, Monday, November 18th has already come to a close for him. Before long, he will say his last good-byes and fly to Auckland. Then, after a 7-hour stopover at the airport, he is scheduled to fly back to the United States. The 14-hour flight will be long for him, no doubt. Yet his insurance company has arranged for him to fly business class so that he can lie down when he needs to, and he should have room to stand up and walk around as needed. It is also providing a nurse to accompany him and troubleshoot any medical problems that might arise.

For a long time, the accupuncturists have commented about the energy they feel in Karlton’s left side. Yet we have seen little evidence of it. During reflexlology and cranio-sacral sessions, Helen specifically worked on his hand and fingers and we saw movement there on a couple of occasions. But Karlton was unable to reproduce it at will. Alexa noticed it one time too during their trip to Queenstown. While he was sleeping, she moved the fingers of his left hand, pulling each one, in turn, apart from its neighboring fingers. In his sleep, Karlton flexed his fingers backward but was unable to repeat the movement while awake. And so we have anticipated the moment when Karlton would be able to move those fingers on his own. The day finally came last Wednesday (11/13/2002). He reported that it occurred almost like a switch being turned on. One minute he could not move his fingers; then, suddenly, he could. The movement so far is restricted to making a fist. But we are hopeful that other movements will soon follow.

Last night on the telephone, Karlton reported that he can now move the toes on his left foot. He said, “In the same way I can move my fingers, I can now move my toes.” I understand that to mean that he experiences limitations in their movements, but he can move his toes on his own nevertheless.

Once again we say thank you to all of you who have been so supportive with your positive thoughts and prayers. These two advances are nothing less than miracles. We appreciate so much your love and generous support.

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