A Brief History of Tagtrug Mukpo's Life
Tagtrug Mukpo, the oldest son of the Vidyadhara, Chögyam Trungpa Rinpoche and Lady Diana Mukpo, was born in 1971. While still a toddler, Taggie began to exhibit signs of developmental difficulties. He underwent thorough medical investigations and, although no "definitive" diagnosis could be established, his condition was determined to fall into the general category of autism. Around that time he began having complex seizures, sometimes numerour diffent types in one day.
A variety of different care situations were created for Taggie over the years, including several attempts to have him live with his family aided by caregivers. In the mid-1970's, Taggie lived at Karmê Chöling, where he was cared for by David Nudell.
When His Holiness the Sixteenth Gyalwa Karmapa visited, he suggested that Taggie come to stay with him at Rumtek monastery in Sikkim; he thought Taggie might be suffering from what the Tibetans call "tulku's disease," and that the monastic environment and His Holiness's attention might bring benefit. Money was raised to accomplish this and Taggie moved to Rumtek when he was six and lived there most of the time until in his late teens. By then His Holiness Karmapa and His Eminence Jamgon Kongtrul Rinpoche, each of whom had taken special interest in Taggie's well-being, had both died; when Sakyong Mipham Rinpoche visited his brother in Rumtek, he felt it best for Taggie to return to North America.
In 1989, after attempts to set up adequate care situations for him in Boulder and Halifax had not worked out, Taggie moved back to Karmê Chöling, residing at his father's former home near there, Bhumi Pali Bhavan (BPB), for a time. Jeannine Hawkins, a social worker who first assisted Taggie during this period and who, in 2003, was instrumental in obtaining the Medicaid waiver which now provides the majority of Taggie's support, says of that time,
(It was)..." November 1989, around then. He had just come back from India. He had no benefits. He was living at BPB at the time, and he had various people that were caring for him, and he was burning them out quite quickly. At the time he was extremely active. When I first met him he was just darting, darting all the time. You know, you couldn't get him to focus on any one thing; he was just off."
Shortly after this, because of Taggie's level of agitation, propensity to violent reactions, and need for full-time attention, his family came to the reluctant decision that they were unable to maintain the level of care he required. Taggie's guardianship and support was assumed by the State of Vermont, which placed him in Dayspring Group Home for those with developmental delays.
Jeannine Hawkins was also Taggie's social worker when he was at Dayspring. While Taggie's self-sufficiency increased there-he learned to dress himself, brush his teeth, and make his bed-other aspects were difficult. Jeannine remembers that Taggie's medications at the time were ineffective and resulted in negative side effects. He experienced frequent seizures and the emotional upheavals of other Dayspring residents, who were also autistic and/or had varying degrees of mental retardation, caused over-stimulation. Taggie became increasingly violent. Jeannine says, It became intolerable for Taggie, and it was clear that he couldn't stay in that environment.
In 1991, Herb Elsky, a sangha member living at Karmê Chöling, petitioned the state for legal guardianship and moved Taggie back to BPB. Jeannine continued as Taggie's social worker during that transition. Along with Herb, other staff members from Karmê Chöling assisted with Taggie's care.
Jeannine reflects, "It was very difficult over the next few years for those good-hearted people to know exactly what to do to provide an appropriate environment for Taggie. They persevered ... much to their credit."
She remembers one visit to BPB. ..."this poor young man was running around frantic, not knowing what to do, and Taggie was just running circles around him. She said to the young man, I think you have to be a little bit firmer setting the boundaries." During this time, Eric Gunsalus, who had been one of the caregivers at Dayspring, was hired to give Herb Elsky much-needed relief. Eric remained as one of Taggie's caregivers for the next decade, providing stability through two staffing transitions.
During 1992, Robert and Chris Chandler replaced Herb Elsky. The Chandlers provided a family environment for Taggie. Over several years, in consultation with Jeff Fortuna, they realized the necessity of establishing a consistent care model, including setting tight boundaries and giving up all expectations for Taggie's "improvement." A long term approach to Taggie's care evolved from these important efforts made by the Chandlers. The evolution of Taggie's care model remains on the underpinning of stability hard won during this time based on not only the long-term, hands-on experience of a group of highly dedicated caregivers but also in consultation with Drs. Edward Podvoll and Jeff Fortuna, a pioneers in the field of contemplative psychology and home care, as well as Taggie's psychiatrist, neurologist, and nurse practitioner.
Although in the early years the approach to Taggie's care was to try to "fix" him, engaging in goal-oriented efforts to make his behavior more "normal," Dr. Podvoll proved prescient when he said he expected Taggie's gains would be "glacial." Eventually those around Taggie realized the need to cut through their own hope and doubt and stop looking for rapid improvement, freed them to see Taggie's situation more clearly. From this perspective, writes Christine Chandler, who lived with Taggie for six years, "it is important to eliminate all talk about "gain," or at least to put the gains in a context of Taggie unfolding, because he can now relax around the social world surrounding him-because people understand him better, are more keyed into what he is trying to "say." That is what his precious teaching and manifestation is: "Expect nothing. Relax and everything is perfect, just as it is."
The social world into which Taggie can now relax is provided by diligent maintenance of his individualized care plan, which involves setting firm behavioral boundaries and allowing him to unfold into social situations as he can. His legal guardian, Susan Taney, MSN, ANP, has researched alternative care models for autism and has, to date, found no other program that matches the level of care and governmental support Taggie now receives. The state of Vermont is very helpful in providing what is needed for developmentally delayed adults.
As Jeannine Hawkins, BS, Developmental Services Supervisor, Northeast Kingdom Human Services, says, "...a care plan has evolved that provides the secure boundaries within which Taggie can relax and be happy. It is because of this that I worked hard on Taggie's behalf to get the maximum amount allowed by the state to help to provide what is needed to maintain what he has in place."
Continuity is a key to Taggie's health. All the health care providers and professionals involved with Taggie's care over the years-his doctors, pharmacist, social worker and so forth-continue to be amazed and encouraged with his slow but sure increase in stability and calmer way in which he can begin to interact with others.