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.