Posts Tagged ‘systems theory’

photo credit: horizontal.integration

Today is Jan. 1, 2011– or 1.1.11

That’s a lot of ones: Day One; First Month; New Year and Decade.

Could this be a cosmic sign?

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 for 2011. But, this new decade and new year will race forward–with or without us. In 365 days, it will become 2012, and then 2013, 2014…. The cosmic universe 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 36 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 on 1.1.11 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–2011:

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 in 2011 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.

In 2011, 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 2011, 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 2011–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 2011.

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.

Day 3 of the 30-Day-Every-Day Blogging Challenge

Tom and I have sold three of our previous homes ourselves. But with the economy, the time of year, the fact our condo is in a private community… we decided to turn it over to the professionals.

Don’t know about you, but every parent of a kid with a disability feels slimy squiggly worms climbing up their necks at the phrase, “Turn it over to the professionals.”

Don’t get me wrong, some of my best friends are professionals. *laugh, had to add that*

What I’ve learned from my experiences as a mother?

I don’t like to mistrust people or cause problems. I don’t enjoy confrontation. I don’t think my way is the only way. It’s no fun to continually question the rules. But…

People with disabilities and their families have been the victims of the experts. We have seen them change their minds, make stuff up, be flat-out wrong (remember refrigerator mothers and institutions…) So, I am skeptical of experts, research, and all professionals. Including Realtors.

Do Realtors conduct scientific research?

The dominant research paradigm in our culture requires we disprove the “null hypothesis” to find the new truth or fact. The scientific method demands testing under strict guidelines, then in additional studies, all findings must be duplicated with similar results. (Hey, I didn’t take all those research classes for nothing.)

So maybe some “Research Realtor” (say that three times fast) set up double-blind studies, evaluated the statistics and made scientifically unbiased conclusions. But, maybe all this objective advice about removing all personal pictures and hiding the coffee pot is nonsense propagated on a TV show? Maybe no one tested it at all. Maybe some company exec. made an arbitrary decision. Don’t know, I haven’t studied the real estate literature.

Just Trust Me.

But don’t you wonder if deciding a one-hour Open House is more effective than a 3 hour Open House is based on pure speculation? Is there quantifiable data proving the internet is the only effective way to advertise? Do the pros navigate their own websites ie. When we typed in our street address on the Realtor’s website, it said, “no such property exists.” Scary.

We parents learned the hard way about authority and trust when researchers insisted on using standardized tests–in multiple choice format–because that was easiest for them to collect data.

Do Realtors now rely almost exclusively on the internet and one-hour open houses because it really is more effective selling houses? Or, to make their personal lives easier? (Hey, no one wants to work Sunday afternoons.)

It’s only one week since our listing–so we need patience. But Tom and I are starting to second-guess our decision and wish we tried to sell our condo ourselves. At least we would be in control, success or not. Our condo at $148,900 is small potatoes to a real estate professional. Yet the $8,000 commission might mean the difference between a sale, and no sale. And $8,000 is what Tom makes in a year working 3 days a week at his job at the golf course.

Once empowered…

One thing about being an advocate and parent of a child with a severe disability is we know about empowerment and self-determination. We have learned to be persistent. We communicate our needs, concerns and keep asking questions. We don’t trust professionals to do their jobs. We question promises, motives and actions. We question…well, everything. That is how we survive.

Not sure if that is good or bad, it is just the way it is. In systems theory we understand everything is connected. What affects one part of the system affects all the parts of the system (click here).

Sorry Realtors, nothing personal, but when you get our listing, you also get our life’s baggage. We act the same for hairdressers, plumbers, and especially for all service delivery services (and I don’t mean Federal Express).

Parents carry battle scars that never heal. And this carries over into all aspects of life.

Your Turn

So, maybe the questions are: Can parents ever be happy? Can we ever trust professionals to do their jobs? What do you think when you “turn it over to the professionals”? Do workshops on self-determination and empowerment help or hinder our relationships?
Do you “Question the Rules”?

Tomorrow: “When Sci-Fi Touches Real Life” a story where the heroine is one of those squiggly worms.

Keep Climbing: Onward and Upward.

All the best,

Mary

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In case you missed it:

Day 1: “Every Day for 30 Days” Blogging Challenge or “IBP” (Individual Blogging Plan) Day 1 of the 30-Day-Every-Day Blogging challenge. (click here)

Day 2: Memory Rocks: not being objective (click here).

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman is blogging about today at http://alisongolden.com/

Aaron’s a Dude: The Dignity of Risk

Aaron just spent 3 days on a Dude Ranch in Michigan.

Before the Dude Ranch closes for the winter, buses of adults with all kinds of disability labels arrive and sleep in bunk houses, eat in mess halls, go boating, ride horses and sing songs around the campfire. For many of these adults—this is the highlight of the year.

The ranch’s owner is friends with the owner of the residential company which provides Aaron’s supports. (This is a great example of Bronfenbrenner’s system’s theory—circle of friends, using your contacts…click here).

Aaron is assigned a staff counselor one-on-one, but everyone pitches in to make sure everyone is safe and has a good time. Always being safe and having a good time sometimes contradict each other. Bob Perske used to talk about, “The Dignity of Risk” and as parents this is a complex and difficult balancing act.

This year we were lucky because one of Aaron’s regular staff went to camp. This was nice because she has worked with Aaron for 6 months and knows what Aaron likes and doesn’t like. So that helped mom’s anxiety and I would think made a big difference to Aaron.

This is about Aaron’s fifth dude experience and each time it’s a worry for me and Aaron’s dad. It is hard to get good feedback on what Aaron does and doesn’t do. I wish he could talk and tell us but I figure it is a change of pace, he likes to ride on the bus, sing songs. Especially, he likes to go horseback riding.

When Aaron was growing up, he took horseback lessons for about 10 years. He only stopped because he reached the 150 pound weight limit. When Aaron sits atop a horse, he looks like Prince Charles: head high, back straight, sometimes he even points his toes. I think he and the horses communicate in their own cosmic language. Sue Radabaugh, Bobbi Theis and the physical therapist at Cincinnati Riding for the Handicapped gave Aaron and each rider a lucky horseshoe at the end of each series of lessons.

We learned horseshoes should always be positioned so the luck stays inside the horseshoe and doesn’t fall out. Aaron still has the horseshoes. God knows we don’t want to have our luck fall out.

Each year, I try and give Aaron “the dignity of risk” and not worry about the million of things that can go wrong at camp. I don’t like to think of myself as one of those “over-protective” or “hovering” parents. Some years have gone better than others, but each year we hope and pray our luck holds.

It is just difficult having a person like Aaron who is so vulnerable, when we don’t really know how the staff will act in this very different environment. For instance, Aaron has red hair, freckles, and burns in about 15 minutes in the sun. His caregiver is from Jamaica and has never had a sunburn in her life. I send sunscreen, I give instructions, but each year we ask, “Will Aaron come home with a sunburn?” In the post about deciding to go to the family reunion (click here) I could actually do the ecological assessment and control the environment. But the Dude Ranch is too far away. I had to put the control in the staff’s hands. And we’ve had some rocky experiences with some staff.

We did find out that Aaron went right up to the horses and wanted to ride, he went out on the lake in a boat four times, and he passed out the light bracelets for the barn dance the last night. The little radio we sent for the bus ride worked well, and actually came back with Aaron. Only one toileting accident. So all is well for another year. Hopefully we will see some pictures. And hopefully we will be even better prepared for next year.

Maybe I should hammer some horseshoes (with the luck inside) up on our front door. Whew! made it another year.

Advocacy in Motion:

Last weekend was the turning point. Hey, I’m an experienced advocate, I’m even a graduate of Question the Rules. Sometimes, enough is enough, you just can’t take it any more and must take action.

Herby, Me and Kathy Griffin outlined the issues in a previous post called Signing Your Life Away. Click here for the story Signing Your Life Away.

Well, Saturday night I raised the challenge and refused to sign.

The staff person handed me a pen and the paper and was shocked I wouldn’t comply. She became insistent and said, “But you have to sign, we have to file this paper.” So I wrote her a note on a scratch paper and I’m sure she thought I was being a smartass. (Maybe I was.) I read her the words, “responsible for deterioration in condition” but I don’t think she was even listening to why those words were offensive. She was just upset I wouldn’t sign the “official” paper and now she would have extra work to do. I could almost here her thinking, “Why on my shift?”

I thought about it all day Sunday, my husband wisely told me to choose my battles, this was a small thing. I told him Rosa Parks refusing to give up her seat was also a small thing. Of course, then he told me I was being over dramatic (I was) but… I decided this was so small, it was a battle we could win.

When we brought Aaron back on Sunday night, I thought it might console the staff person if I made up a formal release form with the same format as the first paper, just omitted the offensive words. Then she would have a paper to file. She finally said I should call the supervisor, it wasn’t her issue. (Which was true.)

I spoke to the supervisor on Monday and he reaffirmed how important that paper was. All of a sudden this paper was saying all kinds of things it didn’t say: the parents would be giving the medications, take the person to emergency care if necessary…. When he finished I explained I had no problem signing a paper saying I would take responsibility for Aaron and make sure he got good care, but I would not sign a paper saying I was responsible for his “deterioration in condition”. (Geez, I get upset just typing that phrase.)

He couldn’t understand why I wouldn’t sign it when I have signed it all these years (good point). I told him every time I signed it, it was a dagger to my heart.

I explained we were Aaron’s guardian and of course we could give him emergency care. And besides that was not what the language said on the paper. He told me to go up the food chain and call the person in charge of Human Resources.

I really do hate being a trouble maker. I want everyone to like me, and particularly I am always afraid they will take my bad behavior out on Aaron. But sometimes you just have to do what you have to do.

The person from Human Resources called just now, she was appalled when I read the wording on the paper. She reiterated what the supervisor said the paper was supposed to say. And she said she would fix it.

Period. Done (I think). Job done. Amen. Alleluia! One small step for man…

Next week when we again pick up Aaron, I fully expect a new form to be in place. And just maybe, “herby” will be gone and replaced with “hereby”. Goodbye herby.

I’ll let you know. But I think this was one small victory for the good guys! And like Bronfenbrenner says, everything is connected. See post here. Perhaps this will trigger other positive changes.

Call to Action:

What small act can you do today to advocate for someone you care about? Share your success/ challenges in the comments below. Maybe our community can help. We have some world-class advocates here. Let’s make a difference.

Keep Climbing–onward and upward.

All the best,

Mary