Archive for September, 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

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

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.