Sara has been a governor-appointed Council member for a couple of years and recently was elected to serve as the Council Chair. In this blog she introduces her son Z and shares her experience with a Colorado Regional Center. We learn some of the struggles they encountered and how Z is doing now.
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Z is a 6’2”, 200 pound handsome man. Z loves Disney movies, has an incredible memory, and loves to play. He is the sunshine in my life even on the hard days. He is diagnosed with Autism, is functionally non-verbal, and his negative behaviors are intense. Z eats independently and dresses independently, but was a full assist for most things, is on a strict diet with negative behaviors if it’s altered, and had difficulty waking up for school or being on time for appointments.
After Z was evicted from his home with a local community-based company, the CCB sent out a request for placement and it was denied by everyone in the state. That news was devastating. The only place Z could go now was the Grand Junction Regional Center. I had heard dreadful things about the Regional Centers since Z was a child. I was terrified.
The first meeting with the people who would be working with me to create a new home for Z was intimidating. There were 15 professionals in the room telling me how it was going to be. I knew most of their plan was going to cause Z to become very aggressive. I tried everything I could to convince them there was a better way to work with Z, but like most professionals I encounter, they believe they are right and I was just a dramatic mother. There were a few who were kind, compassionate, and gave me hope. The overall attitude was not fun and continued for a few years. However, they were not the scary people or the scary place they were made out to be by other professionals.
2020 was a big change year in so many ways, I had never been away from Z for more than 4 days. Being told I would not be able to see him for 6 weeks which turned into 4 months and being labeled as “nonessential” to my son was horrifying and very wrong.
The day I got that news, I convinced the latest supervisor of Z’s home to let me Facetime with him every day. She turned out to be one of my very favorite people to this day. We taught Z a new way to communicate with me. It took a bit of time, but it became an amazingly fun part of my day. After Z got the hang of it, he could answer a messenger call directly to his tablet independently. We sang songs, watched videos and learned to have fun in a different way. I also asked the supervisor to help Z be more independent in his ADL’s. They did great with that too. Z went from full assist to verbal prompts.
When the restrictions were beginning to lift. I noticed that they were not lifting them for the individuals in the ICF unit. I spoke to the director on multiple occasions and was told that it was a state decision. I went above her and was told to speak to the state level director, so I did. She is a fabulous person. She told me that the restrictions had been lifted to include outings. I explained that was not happening here. She supported her staff and suggested I was mistaken, but if I had proof of my claim, she would investigate the problem. I emailed the proof to her shortly after that and her response surprised me. She was no longer defending, denying or deflecting. Instead, she asked me to do nothing and trust her to fix this. She explained this would not be a fast fix, but it would be fixed. I was stunned and didn’t know how to respond, but she was someone I instantly trusted, so I respected her request. Within a year there were management changes, attitude changes toward guardians, staff, individuals and the work we were all expected to do.
The changes I have seen since that day are extraordinary. Z is now part of our community, he lives, works, eats out, and enjoys community recreation. The personal growth I have seen in him is beyond anything I have ever hoped for. I know part of it was Z’s choice to become more than what was expected, but it was also encouragement from wonderful staff and the support and encouragement to try new things by their supervisors that created the opportunity for change. The last change is in me. I gave Z the power to choose his own path and encouraged staff to try any new things they felt would be fun. I stopped giving warnings about what Z didn’t like. This minimized the fear the staff felt when trying new things with Z. Z took that new confidence in him and ran with it.
Z now works cleaning RC vehicles. He washes windows, vacuums and runs the pressure washer. He participates in Special Olympics, attends the yearly community prom, goes boating, rides in floats and adaptive ski gear, goes to fun parks with his roommates, snow sleds, rides a horse (with a trainer) and learns functional riding skills such as galloping, using the reins and obstacle course training. Z has overcome fear and controlled anxiety to be successful and build this beautiful fulfilling life he loves. This wouldn’t be possible without his entire team working together.
I wanted to share part of my experience with Grand Junction Regional Center because of the successes, and genuine love of the staff for Z. The excitement I see in staff when Z surpasses their expectations is almost as wonderful as Z succeeding. I am grateful for the people who have helped Z achieve his amazing success. I hope Z’s successes encourage others to hope, dream big and have faith in their individuals as well.
