Letter from Asoka Mukpo
November 2008
Dear Friends,
As the Mukpo family representative and chair of the Tagtrug Mukpo Support Team, I am writing to give you a brief update on Taggie's current care situation. Much has changed since the website was last updated, so I encourage you to browse around a bit and meet some of the new faces that are a part of Taggie's life.
Taggie is presently living at Bhumi Pali Bhavan (BPB), his father's former teaching residence located a few miles away from Karmê Chöling. His primary caretaker is a wonderful young woman, Erin Christie, who replaced Taggie's previous Shared Living Provider (SLP) about a year ago. As Taggie's Shared Living Provider, Erin is an employee of Northeast Kingdom Services, a Vermont non-profit responsible for the distribution and administration of the yearly grants that the State gives to qualified disabled persons. Erin currently rents BPB and lives there with Taggie. She has been a fantastic caregiver and friend both to him and to the local Shambhala sangha. Erin has been exposed to developmentally disabled persons from a very young age, which is clear from even a brief observation of her interactions with Taggie. When I've seen them together, it's been a pleasure to see how responsive Taggie is to her, and how skilled she is at communicating with him, which can be challenging if you aren't willing to be patient and aware of his state of mind.
Taggie is now 37 years old, and many of the difficulties he experienced in his younger years seem to be mostly pacified. He hasn't had a major seizure in about five years and there has been a marked drop in the frequency of brief seizures. Taggie has been eating well and exercising, and in my interactions with him he's shown more emotional expressiveness than I can ever remember. There was a challenging period when we were transitioning to Erin as SLP. Taggie had a few weeks of new faces and exhibited some frustration with this. Thanks to Erin and Susan Taney's expertise, Erin was able to establish herself as a new figure in Taggie's life in a gentle way that allowed him to feel comfortable. It is immensely comforting to see things working out as well as they have. This isn't to say that Taggie never has hard days or difficult moments, but we all do, and in his case they are much less dramatic and more workable than in the past. There is a sense of health and normalcy in his life now that hasn't always been there. A lot of that is thanks to the help, service, and donations of so many people who have been bodhisattvas for Taggie over the last years.
Erin has repeatedly stressed her belief that Taggie should be viewed as a person who deserves respect and the opportunity to make his own decisions. It's my feeling that this attitude has helped Taggie feel more confident to explore social situations and set boundaries for himself.
This spring, we brought Taggie to the May Day celebration at Karmê Chöling, and I watched him move around under Erin's attentive eye in a situation that has usually been challenging for him. There were times when Taggie felt confident enough to engage the environment, and times when he stepped back and took a break from the social activity. The next day, I brought him to a horse show where our mother, Lady Diana, was competing. Again, Taggie let me know when he wanted to interact with us and when he wanted to have a little space to himself. We had a good day together, and I could tell that he enjoyed it. It was a special time for me; I was comfortable enough with Taggie's state of mind that I could take him out with only his family members to watch him. Obviously this is a sign of continuing progress for Taggie.
I have only been directly involved in Taggie's care situation for about three years, but this is clearly the best period that I've seen. For the moment, we are financially stable, Taggie has a wonderful care team, and he's living at BPB year-round. Although there is no guarantee that there won't be unexpected challenges or difficulties in the future, he has a team of skilled professionals administering his care plan. He has also been coming to Karmê Chöling fairly regularly to interact with members of the sangha. As it stands right now, Northeast Kingdom Human Services is responsible for structuring his care plan and hiring his caregivers, but his legal guardian, Susan Taney, has the final say in whether we keep him in their care. I have met the people who are responsible for Taggie's case at Northeast Kingdom Human Services, and I have found them to be committed professionals who truly care for and respect Taggie; I hope that our relationship will continue for a long time. Obviously Erin won't be able to serve as Taggie's Shared Living Provider forever--although she has told us that she is happy and feels deeply connected to Taggie--and we will eventually have to transition to another individual, but I am confident that his case managers will be able to work with us to find someone who is as skilled and committed as John and Erin. Were we ever to feel that Taggie needed to be pulled out of the program for any reason, it would be difficult, but we would find a way to make it work; fortunately I don't anticipate that happening. We have discussed the possibility of working something out with a sangha member who would take on a long-term commitment with Taggie after Erin leaves, but we would need the right candidate for this to be possible.
Again, I encourage you to look through the website for some testimonials from other members of the support and care teams, including a biography of Erin Christie and a list of Taggie's other present caregivers. They are a strong team with a shared view of how to care for and support Taggie. We are truly experiencing a good period with Taggie, and although it's my nature to consider potential trouble sources that could arise in the future, I feel confident in the people who are involved with him and believe that we will be able to meet any challenges that may arise.
Taggie is not lacking in love, and I feel there is tremendous opportunity for developmental growth if the stability that so many people through the past few years have worked for is allowed to continue. As always, I encourage anyone who has more interest in Taggie's situation to contact us, and if you feel capable of lending any kind of support, financial or otherwise, we can always use it. As it stands right now, we require about $15,500 per year to fund a respite caregiver to allow the primary SLP a few days a month to rest and pursue other activities in her life, educational items for Taggie, and ongoing operational costs of the Trust (see Cost of Care). This rest time is very important for the SLP, and any help you can give is crucial in retaining talented and passionate people who work well with Taggie. He relies on your support, and I cannot express to you how much of an impact even a small donation has on his life. For those of you who have donated in the past, your generosity has paid off in Taggie's standard of living. We are presently working on making donations tax-free, and hope for that to be possible in the near future. Please contact us if you feel inspired to help, financially or otherwise.
Thank you for all your help and kindness throughout the years.
Take care,
Ashoka Mukpo