Puzzling Ways To Change Behavior Patterns

I am in the process of becoming a Certified Person Centered Thinking Trainer because I am so passionate about this process. I have witnessed my daughter's life transform into a rich and full life.

We use one of the tools to achieve this. It is using "Important To" to get what is "Important For" her. It is a win-win and we are all happier as a result.

A video explanation featuring Michael Smull is available at https://www.youtube.com/watch?v=VDqERIxM4HM.

For now I'll share this video I created about our most recent endeavor which was a great success!

Feel free to contact me at journeyofchoice@gmail.com

And check out my newest project at www.thebffproject.org!

Interested in learning about Person Centered Thinking? Visit http://www.php.com/services/PCT

REALIZATION on my own Mortality: A process

I speak with hundreds of families each year about planning for their child's future when they are no longer able to provide the supports and supervision for their child, most of whom, like my daughter, will need a lifetime of supports.  The fact is, is that death is inevitable. While we hate to talk about it generally, a day doesn't pass where I don't wonder...

"Have I left the trail that needs to be there for Lauren?"
"If I died today, is there enough money?"
"How would Lauren survive without me?"
"Who will make sure people actually listen to her?"

... I know that I share this concern with hundreds of thousands of other parents who have dedicated their lives to raising a child with a disability, be it a developmental, mental health, or other factors that limit their ability to provide and fend for themselves.

See if this sounds familiar, it goes something like this... "I'm too young to think about it; to if I think about it", "it will happen" then,  "it can't happen, I need to be here for my child". Then you move to: "it might happen", to "Holy Shit! It's inevitable! I'm gonna die and I have so much to consider that it is crippling and preventing me from doing anything."

• In my 30's - I didn't much think about my mortality
• In my early 40's - I thought... well it is going to happen someday... I should think about it....
• In the late 40's - Hmmm... better put a trust in place. Conservatorship, too but I have lots of years left, after all I feel really young. But! "I Just Can't Die" I need to be here for Lauren. That was pretty much my motto.
• Early 50's - It seems that I should really do some good planning, after all it is the year I need my first colonoscopy. I guess there is merit in having a good plan since I am a half century old. 
• Mid-50's - ack.... I really am getting older, my baby now has a few crows feet and I have too many to count. Best get serious now.
• Late-50's - Oh Crap! I am going to die someday! It is inevitable! I had best get my act together and fast! 
• Now, it the "Oh Sh$t, I'm 60 phase, I need to make sure everything is in place and soon!

I share my birthday year with Disneyland, so you know that I embark on a landmark birthday this year. Many of you older than me may think... "she's still a baby", while, I am hoping, others say "no way! She can't be turning 60!" 

Watching my mother's health and quality of life fail at 84, I realize that I am of her genetics and I have probably another good 20 years to accomplish so much planning, documenting and getting my act together so that Lauren is protected. 

The moral of this story? I think that this type of end of life planning requires that we go through certain states in life before we are ready to take action. Many of us have our living trusts, wills, and special needs trusts in place.

Teaching Lauren self-advocacy skills is critical. Providing her with ways to communicate what is important to her and how people may best support her as a matter of daily routine is critical to her long term quality of life. 

I have been running my own supported living agency for Lauren for the past 8 years. I have trained her 7 support people to provide person centered services. We use person centered tools and the one page profile as the product that ties it all together.  Is it perfect? No. Is it better than she would get elsewhere? I believe that without a doubt. 

While trying to age gracefully, don't forget to take time for yourself so that you have the energy required to do what your child needs and plan for the future.  

• Take care of your own health.
• Go to parent education events.
• Do your legal planning to include a Living Trust and a Special Needs Trust set up by a an attorney specializing in this area.
• Leave a trail for others to follow on how to best support your son or daughter.

We all hope to live a long and productive life. I know that I do. We also need safeguards in place to protect our sons and daughters so that we may do so with piece of mind.

Silence Is Anything But Golden

There are moments in life where we are able to gain insight through personal experiences.  As the parent of an individual in need of lifetime supports, I have had many opportunities to expand my view of the world.  This time, I have been blessed with the opportunity to feel, ever so briefly, from the side of those without eloquent language skills.

The inability to effectively communicate is my current learning experience.

On May 5th, I had jaw surgery resulting in my jaw being wired shut.  

In the recovery room, I was handed a paper and pen to communicate, being loaded with anesthesia so no one could read my writing and I could see my failing penmanship as it trailed off the paper. In the hospital room, I wasn't even given any way to communicate except my own mumbles.  Agonizing jaw pain and no way to communicate. 

Prior to the surgery, I had trialed a few apps before the surgery and found one that was simple and effective. Through a voice which was nothing like mine, I was able to communicate "I am in pain", "I'm thirsty" and "I need to go to the bathroom", all the essentials were there. I could also type and have it speak for me.  

People are busy, bustling around, ready for the next conversation, activity, task, etc.  No one wants to pause while you type out your five word response or request.  This requires a pause in the hum in the room.  You become self conscious while everyone waits for you, increasing your mistakes, and sense of being on the outs.

On top of that, if I try to talk with my wired jaw, I am able to use gestures and find that I immediately fall back into using simple sign language that I learned when Lauren was young. Sadly, only Lauren understands what I am signing :) I do it anyway-makes me feel more effective, even if I'm not.

Listening to Lauren has taught me that when something is out of context of a current setting for environment, it requires me to listen, really listen, fill-in, listen, and ask leading questions to try to remember what is important to Lauren and the Disney princesses most present in our lives currently, her dolls names, where she went last week, yesterday and what the plans are for the week. All of this bantering the possibilities about what she might mean happens in a split second but it can often take me a few tries.  

Now, it is me that has to remember that while my language is unintelligible, I need to set the stage.  It takes more time, it can be frustrating to get your thoughts across, even with a device. 

For me its been less than a week to date. I can only imagine the frustration and feeling of giving up on communicating with those that don't understand or don't have the patience to wait to listen. 

As the weeks progress with the wires on my jaws, limiting my ability to communicate, may this awareness set deeply so that I make more time to listen, really listen, to all of those that wish to communicate with me.  Whether it is a language barrier, a communication delay, or difficulty in being able to share thoughts because the time from brain to mouth or keyboard, takes time, may this experience help me and others.

LESSONS LEARNED

1. Don't assume that health care providers are up to date on technology supports or even consider them.

2. Ask someone if they don't get involved  in conversation, they may not participate because it is poorly understood.

3. Continue to teach language - speaking for those who are able, writing, words, sign language, devices that help. Don't give up at a certain age, communication is essential in life.  Use an multi-faceted approach to communication. There is not one way, there are many. 

4. Be patient with those that we support. They are doing the best that they are able.