by Mary E. Ulrich | Sep 17, 2010
photo credit: Adam Weiss
Chris Brogan is one of my social media heroes. He says you should blog everyday. (click here)
I’m new to blogging. He’s a social media guru. So, there should be no question but to do what Chris says. Right?
I certainly have enough ideas and motivation. It took an act of God to finally get the resources and tech help, but our little basecamp is evolving. So what’s my problem? Why does every post I write take hours or days? Why am I only writing two/three blog posts a week–at the max?
Chris is BUSY, BUSY
Chris Brogan runs several major companies. He’s an international speaker and consultant to major firms. He’s a thought leader in the field. He writes books, and did I mention he writes a blog post every day…
He conducts video/audio interviews. He posts from his car, kitchen table or hotel rooms. (Yea, he makes video blogs in his car.) He actually understands code and develops software programs. Geez, and he blogs every day…
Did I mention he has a family with young kids? And he blogs every day…
Important Stuff vs. Everyday Stuff
Every thing Chris does is important because it is Chris. He is his brand. Even when Chris talks about ordinary stuff it influences the field. If he mentions the name of a camera or eats at a certain restaurant it is news. He handles this responsibility with grace and proves he is a Trust Agent.
Hopefully I also handle my responsibilities and have proved I can be trusted, but my stuff is just everyday survival stuff parents of kids with disabilities have to do. No glamor, no big crowds. No paycheck. Just everyday living. But important in its own boring way.
Aaron is worth it.
The goal of creating a decent quality of life for a person with autism in his own community is bigger than me, or Aaron, or any one of us. We are trying to do something that has never been done in the history of the world.
But inclusion is about blending in. It is about changing the world one person, one parent, one family, one community at a time. (click here)
So, our everyday drama continues. (click here) As my husband and I are aging and can’t do steps, we need to find a ranch house. We signed our house with a Realtor yesterday. The first open house is Sunday. We filled up our first storage bin and the house-stagers took 4 hours to rearrange our living room. The house is looking so good we’re wondering if we could stay if we just put in an elevator or one of those climbing-stair lifts. But, that doesn’t solve the long term solution of our mobility and aging issues. If we move back to Butler County we could again vote for the levies and give our one voice to continue the funding of the Board of Developmental Disabilities (they removed “mental retardation” from the name, yea!)
I will pick-up Aaron from his home Sunday noon to 8 PM. He hasn’t stayed overnight with us for the last three Saturday nights–and I’m feeling guilty as hell. We’ll try and do something special for him.
All the changes in our ready-for-open-house will upset Aaron. And I hate to think of the havoc he would wreck if we were in the house for a long period of time. So, we’ll try and find ways to entertain him outside the house. We’re even storing all Aaron’s personal things from his room in the garage at his residence. The caregivers aren’t thrilled, but it is Aaron’s house. Guess Aaron is like the rich folks with more than one bedroom:)
So, should I blog everyday?
Climbing Every Mountain is now in its second month. My vision for each blog post was to create original self-contained articles. I was trying to take a personal story and teach one concept. Most of the posts are over 1000 words which is long for blog posts. I’ve read the average is between 300-500 words.
Though I welcome everyone, I’m talking about long-term care and parents of adults with severe disabilities. Since we don’t really belong to an established “niche” with “keywords” this is like creating a new world. So what would you like?
Comments Please
Do you want a weekly longer article-type post where we cover a specific topic? Or do you want more newsy shorter posts? Do you want a mix?
This week I hired someone to add a security system to the blog. My goal next week is to figure out the AWeber subscribe thingy (you get notices of new posts in your email). I’ve also installed Akismet to try and sort out spam. (If your comment hasn’t shown up, please let me know.) Like most things, there are always surprises in blogging.
Bottom line: Should I follow Chris Brogan’s advice to blog every day?
Keep climbing–onward and upward.
Wishing you all the best,
Mary
by Mary E. Ulrich | Sep 10, 2010
Happy Birthday–Welcoming Another Year of Change.
Thanks for all the birthday wishes yesterday. I was going to say, “another year on the down-slope of the mountain” but though it’s a reality check to make this year count–it sounds so negative. And I’m very positive about this coming year.
photo credit: kaitlyn rose
The big news last year was Tommy, Ana and Isabella moving back to Cincinnati. Never thought it would happen–a true miracle to have my younger son and his family living nearby.
The second biggest news was I finally fulfilled about three years worth of promises to myself and actually launched this blog. Whew, it would have been a lousy way to begin a new year if I had to blow out my candles and wish “start a blog.” Again. So, thanks to each of you for stopping by and making my birthday wishes come true.
Yesterday, it did strike me how things were different from previous birthdays. Several family and friends sent me virtual cards: complete with a virtual cake, which even had a candle to virtually blow out. Now, I’m wondering. Are virtual wishes the same as real wishes? Do virtual wishes come true easier? Can virtual wishes only be for things on the web? Got to say, the virtual cakes were very pretty–though less fattening.
My husband Tom, ever the nurturer, gave me my fondest wish–a new security system for my blog. What? You were thinking something else? (Readers from my Romance Writer’s Group–behave yourselves.) Actually it was a gift of love to give me what I actually wanted (security system) even though Tom doesn’t quite know what I’m trying to do or what it is. That is true love–and the secret of our 40 year marriage:
He trusts me to know what I want.
And that my romance-writer friends is very sexy.
The other internet phenomenon was I got so many birthday wishes either by email, Facebook, LinkedIn, or Twitter. That is another new experience for this year. And true to form, Sister Beth sent me my virtual card a day late. (Beth I love you and you always make me laugh. The technology may change, but Beth’s card will always come a day late.)
Makes one wonder what technology will be offered a year from now?
Maybe Google will be sending “Instant Birthday Parties” (laugh).
My technology birthday wish for this year is to get at least 100 subscribers by Jan. 1. I know, I know. I’m still trying to figure out the AWeber system and alert everyone when there is a new post, but I’m working on it.
The big change in our lives is we are putting our condo up for sale next week. (see post) Usually we have sold our houses ourselves, but with the economy being weak and housing in distress, we decided we needed a professional.
Realtor Team vs. IEP Team
Let’s all make a group moan–Professionals–oh no! Just for fun, let’s compare our IEP system to their system.
We have learned some interesting things this move. First, the realtors work as a Team. Realtor One works with the buyers and sellers (direct support staff–shows houses, listens to their needs/wants…); Realtor Two works with the banks and other Realtor companies (evaluation and assessment–comparison research, loans, assorted paperwork…); Realtor Three does the Open Houses, sells the actual property and finds potential leads to refer to Realtor One (I can’t decide if this would be like our case manager, or a teacher). Unlike my experiences in Disability World–their team actually works. Imagine that!
They also call in Experts (related services). The first set of experts was the “House Stagers.” They took over 4 hours on just our living room. It was just like on TV. They removed all personal items, arranged the furniture looking at traffic flow and how to accentuate the two main features of the room: the view through the two large sliding doors and our fireplace. They pulled pictures and a coffee table from other rooms in the house. They tried the furniture in several different arrangements. They suggested we purchase some live flowers. They did a great job (when we get a link in the multiple listing I’ll add it here.)
The living room now looks sparse as a nun’s cell (and I would know) only even in a nun’s cell they would have had Sister remove the cross over her bed.
Tom and I rented a storage bin but it is already full and we have a ton more to move out to simplify the house and “make it look bigger.”
The biggest surprise is most of the stuff we moved out–we don’t need. I can hear Seth Godin and Leo Babuta shouting, “MINIMALISM” and they are right. But what do you do about Great Grandma Jean’s cherished cut-glass bowl? And Aaron’s Boy Scout uniform????? Sure I don’t n-e-e-d them. But…
I do think a Nobel Peace prize should be given to the person who invented bubble wrap.
I decided last night I am going to ask Aaron to let us use his garage to store his other set of things. We keep two rooms for Aaron. One at his house with his housemate (click here), and one in our home where he comes every weekend. So, two chests, two sets of clothes, two sets of wall pictures, two beds, chairs…. So it is all Aaron’s stuff. I’m sure the staff will think we are being overbearing or something, but I can justify it. I’ll jam more of his clothes in his closet, but Aaron is paying rent and there is room in the garage since Aaron doesn’t drive.
We’ll see. It will probably lead to a couple meetings with our “team” which may or may not work as well together as the Realtors.
Comments
What do your think? Is it reasonable for us to store Aaron’s things in the garage at his house? Should the staff even have a say?
Keep Climbing–Onward and Upward
All my best,
Mary
by Mary E. Ulrich | Aug 31, 2010
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
by Mary E. Ulrich | Aug 28, 2010
Hi Everyone,
ClimbingEveryMountain.com is celebrating its first month.
Thank you for being a part of our growth. Our Basecamp is developing and some great people are starting to gather for our climb. So, it has been a great start.
There is a lot to learn, and our site is still pretty primitive according to other websites, but we’ve added Google Analytics (Aug. 16), Akismet to help filter spam and there is now a way to sign up for subscriptions.
The Google Analytics report is only from Aug. 16th, but it says 91 people have visited the site from over 10 countries. There have been 130 visits which averaged 2.15 page views a visit, 3.44 minutes each time. There were 279 page views all together.
I’m glad I took statistics in college (God, quit laughing) but I’m still trying to decipher all the information.
This is the beginning of an amazing journey. I’m starting to connect with many of my earlier friends from TASH and other organizations. Ann Turnbull has generously given of her time, expertise and encouragement. Anne Bauer, Becke Martin and Kathy Hulgin have been most encouraging. We’re starting to see some parents. Thanks for the referrals from Patty McMahon at the Hamilton County Arc.
So, we’re off. Maybe we’re just strapping on our boots at the beginning of this journey, but at least we have begun.
Thank you for being part of our community. I’m hoping next month we’ll see more visitors, more parents willing to engage in conversation and comments. I know most of you are not shy, so speak up in the comments and tell me your thoughts.
Keep Climbing–onward and upward.
All the best,
Mary
