photo credit: horizontal.integration
Today is Jan. 1
Could this be the year of the Power of One?
We can celebrate with fireworks, silly hats, black-eyed peas and sauerkraut. We can dress in yellow (for prosperity) or white (for peace) while throwing pomegranate seeds on the roof and making wishes. But, this new year will race forward–with or without us. In 365 days, it will become the next year, and then the next …. The cosmic universe doesn’t care about individual civilizations who make their own calendars. It doesn’t care about individual people.
Actually, that is a comfort. I don’t want to be Atlas holding the world on my shoulders. I don’t want the responsibility of saving the world, that’s too much.
Systems Theory–Circles of Life
Bronfenbrenner’s systems theory states that what affects one part of the system affects all the parts of the systems. In previous posts on the circle of life and family reunions I’ve talked about his embedded systems (like Russian Dolls). The individual is in the center circle, surrounded by the family, surrounded by the community and “systems.”
Inner Circle: Aaron
When Aaron, my son with the labels of autism and developmental disabilities was growing up, I made specific dream plans and goals to include him in an inclusive community.
They were audacious plans. But we had IDEA and ADA and hope. And Aaron was young and had lots of years ahead of him. I thought the values of ALL people living and working in an inclusive community would keep evolving into a more accepting world. I thought I could count on the professionals, the local, state, national agencies and organizations to help.
But those systems don’t exist for adults with disabilities and/or their families.
Aaron is 42 years old. For adults there is no mandate or law saying he can get services. So we have watched as his behavior and communication have deteriorated. And, frankly, I have even had trouble envisioning a new dream plan.
This past year has been a painful experience watching the residential and vocational companies NOT want Aaron–but want his Medicaid Waiver funds.
The opportunity of a new year is to dream again. It’s time to use the Power of One.
The Power of One: For Aaron
Aaron recently started a day program with Goodwill/Easter Seals five days a week and they are providing him with a one-on-one staff person three days a week. That is the brightest hope we have had for years. So YEA!
Aaron still has a great roommate and one loving caregiver who has been with them for over 7 years. YEA YEA!
And Tommy (Aaron’s brother) and his family are now living near us, so our family can get together more often. YEA YEA YEA!
That is three wins. As this year ends, those are the blessings I see and celebrate.
Dream plan for Aaron:
Aaron will be happy. He will have people around him who love him. He will have choices and do interesting things. Have friends. He will be able to communicate when he wants/doesn’t want something. He will be safe.
Pretty basic. Nothing specific. But again, these are audacious goals.
So, maybe everything you and I do this year will not make much of a difference in the cosmic scheme of things. But using the Power of One, I can do something to make a difference in my son’s life.
In the example of Goodwill/ES, it was the Power of One times 4. Aaron’s Dad, me, our Support Coordinator, and the leadership of Goodwill/ES. We kept at it, and it happened.
The Power of One: For Community
Using the Power of One, I will continue my blog,ClimbingEveryMountain.com.
I will try to entertain, encourage and give information to grow a community that cares about adults with disabilities.
Thank you for being with me on this journey. It has been an amazing first six months for Climbing Every Mountain. Together we can build a better world and community–one person at a time.
Virtual Circles
Old Bronfenbrenner wouldn’t recognize his embedded systems, but today we are using the social media tools (blog, Twitter, Facebook) and reinventing his circles of love and support that will ripple out to touch the future. The people in the circles are not our next door neighbors, they might live on the other side of the world.
Is social media and technology the solution?
Chris Brogan (ChrisBrogan.com) is a social media guru who suggests the future is going to include websites, blogs, forums, videos and online communities which help us connect with like-minded folks to get the information and emotional support we need.
His new company, 501 Mission Place, is helping non-profits use social media and become more effective. Perhaps you know of a non-profit that could use some social media help.
But I wonder if it is too late for many traditional organizations.
Virtual communities are already replacing many of the antiquated national organizations which have huge overhead and an inability to help individuals.
Virtual training is replacing the large conferences, meetings and university classes. Webinars and online courses like Partners in Policymaking are the new “best practice.”
Do you use the traditional phone and agencies in your community, or do you search for people and information in the virtual world of Cable TV, iPods, www, Twitter, Facebook, YouTube and …?
Summary: In this new year, we can use our individual power, the Power of One, to make a difference for our children with disabilities. We can do it by advocating directly for the people we love, and we can do it by becoming part of a virtual community like Climbing Every Mountain or other online communities.
In 2017–We’re Number One!
I hope you will sign up (top left) to get notices of new posts. I hope you will add your voice and stories to the comments. I hope you will use the social media of Twitter and Facebook to invite others to join us. The way we are going to build a better world for vulnerable people is to join together. And I hope you have an amazing 2017.
Keep Climbing: Onward and Upward
All my best for a fantastic year of ones,
Mary
Use Your Power: Comments Please
How can you use the Power of One? Do you think social media can help? Do you recommend other blogs and/or virtual communities?
I’d love to read your comments and know what you are planning this year.
It had been very useful. many thanks for writing it. I’ll share it with my friends. Many thanks
Well I’m new to the whole idea of the power of one and then notion of having a world or phrase as the focal point of the year. I would say mine would have to one of these
focus
preparation
finding my place and serving the world
On the adults and kids with disabilities its going to get very tough to have these big shots who usually don’t have to worry about a thing understand that we are real people. They keep screaming budget! Budget! while they lack for noting and live like aristocracy.Plus with the deterioration of our current social economic system. Finding the means to make a difference is also going to get very tough
I don’t have any answer. I truly wish I did. I would be sharing them right and left. But as long as there are people like yourself trying to teach the rest of humanity what it is like for those like Aaron. There is some hope somewhere.
Have a wonderful day surrounded by beauty.
hi Mary:
This was such an inspirational post. It reminded me of the actual movie “The Power of One’ with Morgan Freeman. One of my faves. I gotta say, you have a winners soul and your son has so many dreams to fulfill thanks to you.
All the best,
Lisa
Hi Lisa, I loved that movie too. True story. Two other mothers (advocates) and myself went to the Power of One movie the day it opened. I found it so inspiring I was taking notes. When we left the theatre, my friends turned to me and ask if I noticed, “We were the only ones in the theatre.” It was so appropriate since so few people were working for inclusion for our kids.
Glad you also liked The Power of One. Now, we can talk about “The Power of Two” 🙂
Im not heading to say what everyone else has already stated, but I do need to comment on your know-how on the topic. Youre truly well-informed. I cant believe how much of this I just wasnt mindful of. Thank you for bringing far more info to this subject for me. Im really grateful and truly impressed.
HI Andrea, Glad you stopped by. Hope you’ll join in the conversation.
Thanks Andrea, but have to admit. There are times when I wish I knew nothing about the disability world.
Hi Mary. Allison is quite right when she points out how you are able to see the good in an otherwise crappy year. I’m still amazed that the people working so hard to make schooling accessible for the disabled didn’t seem to think that they would grow up and become adults.
I like how you see the possibility of merging online and offline community. That is way cool. I’m also glad that your little community is addressing the real problems that adults with severe disabilities often face and those families that genuinely see them as real people and want a better life for them.
Since your community has taken off and mine has not please let me know how I can contribute to making this community work for those of us with severe disabilities who canont communicate what their world is like.
May you and Aaron have a blessed year as we prepare for whatever the Creator intends for this planet.
Thanks Gary. I appreciate that you read and comment on my posts. It is hard to know if they make sense to anyone other than myself–so that is a big help.
The reason there is nothing for adults is because the federal law stops services at age 22. So, no funding–no services. There are still some senators who want to repeal the “unfunded mandates” like Special Education. (One is in Aaron’s district–and makes me ill). One hope we have is that there are more services for seniors, people with Alzheimers, wounded soldiers… so we can only hope that will translate to more community services for all of us.
Have a terrific 2011.
Every year, my grandmother would come up with something to say that rhymed with the year. “Something great in 88,” for instance. When you said “we’re #1” in 11, I really liked it. There was some memory attached to it. : )
I think these digital means to connect really give people a new lease on building potential connections. For instance, when I met the guy who made eons.com (and monster.com), he said the thing he didn’t predict with eons was that people would be on there for a while and then do all their significant networking offline. People used it as a face-to-face connecting tool.
I think that my parents are an interesting example. They’re both Baby Boomers, by way of age category. They have ipads and smartphones and are active on Twitter. Instead of making them less social, it’s given them all kinds of new friends. They have people flying up to visit them, and they head out to visit folks they met on Twitter.
I think the BLEND of digital online and offline is really going to change things. I’m excited for that.
As for the rest of the post, you’re an inspiration. Glad we have you in the base camp. : )
Chris, I think your mom friended me last week. I was so excited. We are probably the same age–though she probably has way more skills and tech support than I do. I’m jealous! One of my goals in 2011 is to try and find a support group (and hopefully at least one person will be over 30:)
As always, thanks for your support. Plus, the volunteer work you do and your vision for helping advocacy agencies on Mission Place is AWESOME. (I’m trying to think of a rhyme–give me time (ooohhh)! Mission place–where non-profit’s pick up the pace… okay, enough for tonight!
You dream for Aaron is the same as my dream for Mikey (my 11 year old son with Down syndrome and ASD). Its beautiful and simple and right.
I’m so happy to have found your blog and look forward to following your posts in 2011. As we move forward as advocates for our children we must remember that the changes that we make today do impact children younger than ours. Although our path is hard it is a little easier for the pavement that you have already laid down. Thank you.
HI Monica, Glad to have you here. Perhaps you would want to sign up in the top left corner: “Get notice of new posts” box.
I’m going to check out your blog and maybe we can share links.
You’re right, there were whole generations of parents who helped prepare the way for Aaron and our family. But, we have slid back to segregation in the last few years and waiting for the pendulum to again switch toward inclusion is hard.
If you get a chance, check out Colleen Wieck’s Partners in Policymaking site and the Parallels in Time–I think you will love them.
Wow, Mary. There’s about three posts in this one. I love how you’ve seen the positives in a crappy year, I love how you’ve built a dream plan for Aaron, your commitment to your blog and how you can use it to create your vision. I am cheering you on!
Funny you say that about being 3 posts, because I cut another three posts out of it. Alison, you have been one of the treasures of 2010.
Love all your ideas. I too think we’ll be on the right track when we really believe we are ONE, in this together. Our only hope is to find ways to work together to save our planet.
As for personal goals for the year, I hope to make better use of technology and social media, reaching out to those who might benefit from what I have learned over my many years as a mom, grandma, teacher and especially as a friend to those who struggle to communicate.
Thanks, Mary, for your diligence!
Char, you are doing great things too. It’s the little day after day after day ways we work to improve the lives of the ones we love. So glad I’ve gotten to know you.
Thanks, Mary, for this powerful message about the Power of One. I have enjoyed reading your blog and I congratulate you on getting it going this year! I look forward to a year of working together, sharing, and moving the world forward one story at a time.
Happy New Year to you and your family!
Judy Bailey
Centreville, VA
Thanks Judy. Got to say, “I look forward to a year of working together, sharing, and moving the world forward one story at a time. ” gave me goose bumps. You understand the core of what I am trying to do. That’s great encouragement.