NASHVILLE, Tenn. (WTVF) — During National Disability Awareness Month, Tennessee Disability Pathfinder is aiming to serve more families, including those who speak various languages. For decades, Pathfinders has helped families with those with disabilities connect to more than 3,000 resources that help them navigate their new normal.
"There would be times that I've cried because I knew nothing about what was going on," explained Tamara Tuckson, the mother of 19-year-old Mckenzie who developed Rett syndrome — the most severe form of autism for females — as a child.
"You're normal at first, there's nothing that goes on and then the X chromosome goes bad," explained Tamara of her daughter's disability. "So Mckenzie lost her ability to be able to speak, be able to have purposeful hand movements. She gained those back to therapy, but to see her come from where she started all the way to what she's been able to accomplish now and the fact that she wants to be a role model for others... I'm really proud of her."
However, that growth did not happen overnight. It was years of searching for the right resources. Tamara was connected with Pathfinders before her daughter went to kindergarten — a connection she said was a game-changer.
"They're only a phone call away and they have a phenomenal team that's willing to answer any questions and what they don't know, they will find out for you," explained Tamara. "When I first started with Pathfinders, there was only one person answering the phone. They had a little website but now you have a team of people that are there for you."
That team starts as a helpline for families but can grow into much more.
"They helped me go through the speech pathology to where Mckenzie has speech occupational and physical therapy. Not only that they helped me learn my rights and taught me how to advocate for Mckenzie in the school. They also taught me how to deal with her behaviors before she learned to speak. So they also taught me how to use the books at first, which gradually was McKenzie was able to go...to the computer, the Tobii that she uses now," explained Tamara. "But they also gave me support. There's support groups on there that you can meet with other parents that come together to that you all have a lot in common that you can kind of bounce ideas off of each other and you can also cry if you need to."
Tamara also said Pathfinders allows families to learn what is needed to help their child.
"You have to advocate for your child. You have to — that's a must because you're their voice. You are the one that knows the most about them," she explained. "That resource (Pathfinders) — take advantage of it. That's what it's there for."
Through her Tobii, Mckenzie told NewsChannel 5 what she hopes others with disabilities will do.
"Do not let the title self-advocate make you feel like you have to do this alone. It's OK to ask for help and to join self-advocacy groups. I am fortunate enough to Peach, my parents and several organizations to assist me with my self-advocate journey. So advocates are more likely to thrive in schoolwork and life. Becoming a self-advocate can be learned at any age," encouraged Mckenzie.
To reach Pathfinders, call 1-800-640-4636
To learn more about Tennessee Disability Pathfinder, visit its website.
