Letter From Our Founder
It was April 4th, 2003, when our newborn daughter was born limp and blue. She was thought to be dead, but after going seventeen minutes without oxygen, she was finally showing an Apgar score of 2.
In the days that followed, we were told repeatedly by a persistent medical staff that it would be “cruel” to let our baby live, and that for our sake, our son’s sake, and our brand-new daughter’s sake, it would be best to “pull the plug.” It was their view that she would live an unresponsive and incapacitated existence and spend the rest of her short life as a “vegetable in an institution”— that would be the “best-case scenario.”
However, despite every warning and negative prediction, we pushed and fought with the medical team to do everything both in and beyond their power to save our daughter. Thankfully, they were able to resuscitate her, and after taking her off life-support, Faith survived, although with cerebral palsy, uncontrolled epilepsy, developmental disabilities, and a host of other issues.
As time went by, it became clear to us that the variables needed to keep our daughter safe were growing in size and difficulty. What would work once, may not work five minutes later, or ever again. It was getting to be more and more challenging to care for Faith. She would experience neurological breakdowns at any time of the day or night, and then there was the threat of Sudden Unexpected Death in Epilepsy (SUDEP).
Even with a diverse team made up of medical professionals, therapists, parents, and caregivers both at home and around the world, we struggled to provide what she needed to move forward.
We were riding a never-ending and frantically swerving roller coaster without seat belts; dealing with daily medical appointments and sleepless nights, all the while searching for the very best specialists on the planet. Our seven-year-old son’s life was turned upside-down, as he went from happy-go-lucky to full of anxiety, experiencing an overwhelming sense of fear, anger, and guilt. He was constantly afraid that his baby sister might die, and frequently waking up at night to see the paramedics in his house.
We were desperate to learn as much as we could from other professionals and parents, taking advice and listening to the successes and failures of those who were also raising children with cerebral palsy, epilepsy, and other physical and developmental disabilities. We discovered that there were others who were riding the very same rollercoaster as we were, and that we were most certainly not alone. It turns out we were all seeking the same answers to the same questions. What works? What doesn’t? How do we plan for the short or long term? How do we deal with the stress that’s beating down on our families?
Moreover, there was that one question, the one that was etched into my head via the doctor just eighteen minutes after Faith was born: What will happen to your daughter when you are no longer able or around to take care of her? Then what?
It seemed that the only other option was to put Faith in a private home or state-run institution, and that was never going to happen. Serious action had to be taken. So, after years of experience and intensive research, a unique idea was born: The Therapeutic Living Community (TLC)—a fully adaptive, interactive, and therapeutic living community. A place to work, play, learn, and thrive. A place designed around persons with physical, cognitive, intellectual, and developmental disabilities, as well as their families and loved ones. Not a home or a facility, but rather a community with heart.
The following pages describe the overwhelming need for TLC, how and why TLC will work, and what is required to make TLC happen. Additional information is included regarding similar existing communities around the world that remain successful to this very day.
For my family and me, it has been over sixteen years since the day Faith was born, and the insanity hasn’t stopped. Nonetheless, neither have we. Because we believe that when families and communities stand together, anything can be accomplished.
All the baby steps have been taken, and now we are inviting you to join us in taking the big ones and finally transforming TLC from dream to reality.
Jeffrey Schulsinger - President