Today we’d like to introduce you to Susan Mooney.
Hi Susan, thanks for joining us today. We’d love for you to start by introducing yourself.
My husband, Pat, and I have 3 children who were all born “typical”, meaning without any cognitive disabilities. Our life was much like most families with busy kids: crazy homework time after school, sports on the weekends, vacations, pets, etc.-we were probably considered normal (Whatever that means.). When our middle son, Ross, was 12 his behavior began to change in subtle ways. At first, we weren’t sure that anything was truly off. It started innocently enough: forgetting things at school, not referring to his teachers by their names, becoming mildly destructive at home-all things that could be attributed to an adolescent boy. However, things began to get worse and we began to search for answers that would explain what was happening to our boy. We visited with doctors, social workers, therapists and even changed his school, but his behaviors continued to decline. No one seemed to know what was going on and, at one point, he was diagnosed as schizophrenic and placed on anti-psychotic medication. These were dark and frightening days for our whole family as we watched this child that we loved become someone else.
When Ross was 14, he finally received a diagnosis that rocked our world. Because he was finally given a brain MRI, it was revealed that the white matter in his brain was deteriorating and we learned that he had been born with a rare genetic disease-x-linked adrenoleukodystrophy. This often-fatal disease has no cure and the only treatment would be a bone marrow transplant (BMT).
This is the part of the story that includes tremendous good fortune. It turned out that our younger son, Max, who was 9, was a perfect match and would become his donor. Our family left for University of Minnesota where we would all live in the Ronald McDonald House and Ross would undergo a BMT.
Our lives were consumed with spending the day at the hospital with Ross and the nights with our other kids at the house. They were so lucky to get to attend school and were kept busy during the days by the incredible folks at the Ronald McDonald House. Pat and I took turns sleeping at the hospital and watching Ross throw up and lose his hair. Everyone stayed strong and positive and the procedure was successful in stopping the progression of the disease.
We returned to Denver to learn how to live again and to get familiar with our new normal (Whatever that means.). Ross had gone from a young boy with lots of friends and activities to one who had a permanent disability with damage to his frontal lobes. We were determined to help him live to the fullest extent of his abilities and so we began to learn about the world of raising a child with special needs.
As we spent our days researching about the various options that are available, in Colorado, for work, socializing and a place to live, we were not satisfied. We wanted for him exactly what we wanted for our other children: a complete life. One that includes the opportunity for meaningful work, authentic relationships and the ability to live as independently as possible, with as much support as is necessary. We wanted him to be a part of a community that appreciates his unique skills and abilities and that welcomes him to be included in the things that his peers would enjoy.
When we realized that such a place didn’t exist, we decided to create it ourselves and Tall Tales Ranch was born.
We all face challenges, but looking back would you describe it as a relatively smooth road?
Learning to live again, after our son’s illness, presented each member of the family with both challenges and joy. Ross remains the happiest person whom I’ve ever known-he loves to engage with people and he loves to laugh! He is also known to find trouble wherever it presents itself. We have had to learn how to keep an eye on him and to limit the number of things that he can get into. We don’t often leave him home alone and so in many ways, we’ve regressed back to having a much younger child around. This, of course, changes our ability to work and to experience the freedom that our peers enjoy.
Once we decided to create Tall Tales, we experienced a whole new type of challenge. I had never worked in the non-profit world before, much less run an organization! Although there was a steep learning curve, we have amassed the most amazing, dedicated support from our network. They walk beside us each step of the way and are absolutely dedicated to promoting inclusion and integration for all of our friends living with intellectual/developmental disabilities.
Alright, so let’s switch gears a bit and talk business. What should we know about your work?
I am the Executive Director of Tall Tales Ranch, which is an organization that is dedicated to providing opportunities and to supporting people living with intellectual/developmental disabilities, like Down syndrome and autism. I am most proud of the community that we are creating, as well as the one that we are currently growing among our ambassadors (our friends with special needs). Our mission is to advocate for these incredible people while helping them to demonstrate the many abilities and unique gifts that they have. We celebrate difference and we are different in that Tall Tales takes every opportunity to provide experiences that promote inclusion and integration. We also help to bring people together in a space that is safe and supportive. We are building a community, in Lone Tree, that will include apartments and a community barn that will be used as an event venue. We will also have a coffee shop that will provide vocational training and employment opportunities to many people living with IDD. Our project is unique in that we will also have “neuro-typical” (people without cognitive disabilities) living and working among us. Our goal is to create a space that is founded on inclusion, diversity, and working together to ensure that everyone has a place and feels a part of their community.
We started our nonprofit organization 7 years ago and have completed our first phase of development: procuring an amazing 4-acre piece of land in Lone Tree (thanks to the generosity of the Schweiger Ranch Foundation) and obtaining approval of our Site Improvement Plan. In our next phase, we will complete our construction documents and move onto building permits. We are hopeful to break ground in 2023.
Alright so before we go can you talk to us a bit about how people can work with you, collaborate with you or support you?
We began a $15,000,000 capital campaign in early 2021. These funds will be used to build our project and so we are always looking for financial support. Connecting with people/organizations that can help further our mission is essential to our success. We love to collaborate and connect with other organizations that either do similar work and that we can connect our ambassadors to for social and vocational opportunities. Although our volunteer opportunities are limited at this time, we always welcome people to sign up and become more involved with our work.
Contact Info:
- Email: info@talltalesranch.org
- Website: www.talltalesranch.org
- Instagram: https://www.instagram.com/talltalesranch/
- Facebook: https://www.facebook.com/talltalesranch
- Twitter: https://twitter.com/talltalesranch
