New Year’s Excitement

January 7, 2010 at 7:30 pm | Posted in Work | Leave a comment
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 The New Year is always a time to start over, take a good look at your life, find areas that need attention, and do what’s needed to move toward balance. For some, it’s a great time to clean out and let unnecessary distractions drop away. For others, it may be the perfect time to take action around what they feel is lacking and change it. For me, it seems to be a bit of both in terms of figuring out how I can best serve others, both in my family and community, in a way that brings out my best.

With this, I’m very excited to announce the opening of Blooming Lotus Coaching, a life coaching practice dedicated to working with families touched by disability to enhance the independence of each member while encouraging alignment within the family as a whole. The mission for the practice is to enable people, with and without disabilities, to connect with, listen to, and act upon their innate wisdom and experiences in order to bring about a life of greater fulfillment for themselves. 

Here families will have the opportunity to learn positive self-expression tools, plan for the future, develop self advocacy skills, find way to approach a fulfilling life, and build community connections and other supports. Parents can focus on prioritizing the best support for your child, lean how and when to seek Early Intervention and find additional assessments, and interventions if they have young children while parents of older children may  choose to explore identifying underlying issues to find creative solutions, balancing personal and family needs, Differentiate between parenting and caregiving roles, determining when good intentions for support inhibit growth and independence, Finding confidence in your child’s abilities, and discerning how and when to let your child soar.

I invite you and those you know to visit http://www.cuttersword.com/blooming-lotus-coaching.html for more information.


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When Help Just isn’t Working: Letting Go Our Personal Care Assistant

October 13, 2009 at 8:44 pm | Posted in Around the House, Megan's Blogs, Ramblings, The Nitty-Gritty | Leave a comment
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Barton and Megan in the gardens at Cambridge, UK.

Barton and Megan in the gardens at Cambridge, UK.

So today was not a fun day. We had to have a discussion with Barton’s morning personal care assistant, and in the end, we parted ways. It’s a bittersweet decision because we had worked so hard to get morning help to begin with, but we found that some underlying issues to be too detrimental to our household to continue.

Since being with Barton, we have only had to let go of help maybe two times. The first was a little more light-hearted since we had hired a student from the University who couldn’t get out of bed until 11am in the morning. The final straw was the beans incident. In a condensed version, I came home to a sink brimming with black murky water and the overpowering smell of Draino. A few days earlier, he had made Barton not one helping of black beans, but the whole bag of black beans. Yes, it was my mistake to be running late for lunch, leaving the container of beans on the counter. Apparently, Barton’s assistant dumped the entire pound of black beans into the garbage disposal. Now, what do you think happens to beans and water in a drainpipe? Just a note, if you try this at home, we are not responsible for the repair to your own drainpipes. Then, to “fix” the clogged pipes, he poured a whole bottle of Draino in the sink, and I’m wondering if it was just for spite, he turned the dishwasher on before he left!

Today’s discussion was a bit more on the serious, and we realized there were some subtle underlying issues that began to create a rift. We had finally found someone who had been in the field for a long time, and was experienced in a hospital, group home and residential home settings. We walked through the normal questions and a modeled the routine of the day. She was on one train of thought, with a specific type of care for Barton, usually working with someone that has a care provider.

But how do you integrate that work into the household that includes both of us, especially when we are working to break down the notion that I am Barton’s care provider? On the first day, Barton was so excited because he wanted to make me breakfast, but was told she was there only to take care of him. How could he communicate that there were things he wanted to do to take care of the household or me, as his wife, but needed some extra assistance in doing so? While we didn’t specifically address the times when Barton would want to include helping me with the household chores, we found the personal care assistant to be inflexible at even the smallest request. Barton tried to explain that I was his wife, not his mother or caretaker, and while the acknowledgement was there, the action didn’t really change.

Not only that, but Barton was feeling more and more like he was losing his voice about how he wanted things done, and that frustrated him because we were in our house. He likes is showers short in a particular way, and like most guys, hate it when other people dote on him. However, his assistant had a particular way as well, and they didn’t quite jive. At the same time, my best writing comes out in the morning, but getting interrupted to get this or that, I was quickly losing focus. I almost felt like I needed to leave our house just to get one thing accomplished. And we didn’t realize how we missed eating breakfast together- it was an important part of starting off the day.

Slowly, I noticed Barton was getting irritated and I was getting frustrated, and pretty soon, the rift was large enough for us to see. I am sure that from a personal care assistant’s perspective, it’s difficult to work with a married couple because the lines blur between working for the individual and working for the couple.

There aren’t any simple answers. Only the ones that come with trial and error, experience, communication, learning, and we’re still just rolling along in that process!


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Speaking In the West Virginia Hills

September 16, 2009 at 11:08 pm | Posted in Barton's Blogs, Speaking Engagements | Leave a comment
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Last week Megan and I had the opportunity to speak at the People First conference in West Virginia. It was a wonderful experience. The conference, this year, focused on building and maintaining healthy relationships and we were asked to present as one of the keynotes in addition to leading two breakout sessions. It was a rich experience for both of us.

We spent most of our larger presentation discussing how we met and using our story to encourage those in the audience to explore and develop their interests as a way to build relationships. One point which slipped my mind during our talk is that by connecting with people around a common interest, people are less likely to react based on preconceived notions and stereotypes if they know that there is a mutually shared interest.

Our breakout sessions got a bit more nitty-gritty as we talked about our lives as a married couple, the joys and challenges that we face from day to day and ways we’ve learned to move through and around those obstacles. We were fortunate enough to have lots of audience participation in both breakout sessions which made for lots of wonderful dialogue and questions.

As usual, our work didn’t end with the closing of our sessions. The second half of the conference focused on the risks involved in inappropriate relationships. Though much of the second keynote aimed at educating people about abuse toward people with disabilities, Megan and I had the opportunity to show those in attendance that there is an alternative to being a victim. This also opened the door for us to talk about the self-defense program we teach for people with disabilities. Perhaps next year we’ll have the opportunity to present on self protection and empowerment.

All in all, it was a wonderful three days and I hope we get the chance to do it again next year.

Here’s an article post about speaking in West Virginia. 

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Living in a Not So Perfect World

June 26, 2009 at 3:35 pm | Posted in Ramblings, Speaking Engagements, The Nitty-Gritty | 1 Comment
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I wish I could say that all of our stories are filled with laughter of dented doors and wild puppy stories; after all, we could fill your ears all night long with them. But then we’d be looking through rose-colored glasses. Occasionally, we experience the heartache of pretty blatant discrimination (let’s just be frank and just call it what it is), especially from the professional community. How could there possibly be a community leader with a developmental disability?

Last year, Barton and I attended a session at a disability conference where a nationally known speaking organization talked about the ways in which their speaking group can be beneficial to people with disabilities. We visited a local group several times, with members that were both colleagues and local community leaders.

However, when we wanted to join, we hit a brick wall realizing that certain members were intimidated and concerned about Barton’s slurred speech, and they were stalling when we offered other ways in which those concerns could be accommodated. I could join, but Barton could not.

I was amazed not only by the blatant discrimination, but also by my reaction to it. I had looked up to several members of this organization, who are also prominent motivational speakers and people I personally had wanted to work with in other arenas. I was speechless at how angry and betrayed I felt, which I had to look at more closely. I had to separate the actions of a few members, which did not represent those attitudes of others.

Barton has dealt with discrimination in one way or another is whole life, and has learned to “just do it anyway,” no matter what. I am still in the process of learning how to move with ease through some of these experiences. While I was labeled one of the outcast kids in school growing up, I didn’t really experience blatant discrimination until I spent a semester in Australia.

In this particular situation, we did write a letter to the national office, not really expecting any response back but needing to call it out and voice what we had experienced. Since we have not received a response, we have blocked out any identifying information. Self Advocacy Letter  

Barton and Megan read poetry at an Open Mic Night.

Barton and Megan read poetry at an Open Mic Night.

Fortunately, Barton and I continue to speak together and individually at many types of events- meetings, conferences, community events, open mic nights, and readings, which are held both on a local and national level. We’re continually amazed to see how sharing our story offers the space for others to open their eyes, overcome challenges and for many, lead to a place of healing.

Barton and I are continually working on how we present together when we speak as a couple, which I guarantee isn’t taught in a speaking workshop.

And, you know, we’re okay with that.

If you’re interested in attending one of our speaking engagements or are interested in having us speak to your organization, please visit http://www.cuttersword.com/events.html.

 

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