Now, it’s the “Oh $hit, I’m almost 70” phase. —70. A milestone that once felt impossibly far off is now here, present, lived-in. I still feel young in many ways, but the truth is undeniable: I am in the phase of life where you can’t pretend there’s still plenty of time to get everything in order. The runway is shorter now. I’ve been reflecting a lot lately. Ten more years of love, worry, planning, fatigue, advocacy, joy, and fear. Ten years watching Lauren grow, shift, surprise me, and need me—still. Ten years of doing my best to hand off pieces of the puzzle, bit by bit, without letting the whole thing fall apart. And ten more years of quietly, painfully asking myself: • Is it enough? • Will it hold when I’m gone? • Who will catch her if she falls—and will they see her, the whole her? I’ve lived with these questions longer than I care to admit. I speak to families every week who are just beginning this journey, or who are stuck in that loop: “I know I should plan, but it’s...

The Missing Link: California's Failure to Include Families in Person-Centered Care Education California has made significant investments in person-centered care, allocating substantial funding to train providers and agencies in this transformative approach that prioritizes individual preferences, choices, and quality of life. Yet there's a glaring oversight in this well-intentioned effort: the families who provide daily care and maintain 24/7 responsibility for their loved ones are being left out of the education process. The Provider-Focused Approach State funding flows generously toward professional development programs, training workshops, and certification courses for service providers. Agencies receive resources to restructure their programs around person-centered principles. Care coordinators attend seminars on implementing individualized planning processes. This professional education infrastructure is robust and comprehensive. But person-centered care isn't just...

In my work parents call and ask me for a recommendation about the best daytime program out there.  It is with great angst these families find themselves plunged into the endeavor of finding daytime services as their child leaves their well planned, structured and much more predictable IEP-driven services. When I faced this with my baby-faced 22-year old I recall the arduous task facing me. I walked into what felt like the abyss of day programs, none of which seemed like anything that the structure of the school district programs offered. I was depressed, fatigued and felt that I would never find the right place.  A few of the other parents and I began discussing how we could start our own program, buy a business, anything to keep them from what felt like the depths of the black hole of day programs.  Finally, several of us selected the same program and it went rather well. A lot of my angst came from seeing the various aged participants and thinking... "...

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

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 ...

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...

In a matter of a few short weeks, my girl will be 30 years old. Given that she needed behavioral supports from the age of 2, I should have known that the road was going to be unpaved, bumpy and filled with unexpected turns.   29th Birthday Party I have learned to appreciate every success, every word that comes out of her mouth and her ability to be immersed in our community, a dream, years ago, I thought only for others. Let's get to this age appropriate concept ... is it age appropriate for us as parents in our 50's and 60's, to still have 24/7 responsibility for an adult child? I think not. Look around at your friends who are off traveling, planning their next adventure without a single thought about their children's care, should lend you some perspective.   So, I say this, as long as it is safe, do what needs to be done to make your life easier, more relaxed, happier, allows your child to be comfortable in your community and if someone has a problem ...