Building a Village of Support and Care for Individuals with Autism
By Shelly L. Huhtanen
In 2008, my son, Broden, was diagnosed with severe autism when he was around 26 months old. Over the years, I eventually learned to focus my energy on what I can do for my son now and to plan for his future. There was a time, when he was first diagnosed, that necessarily was not the case. There were times when I would spend too much energy trying to figure out what I did wrong or what I missed because I blamed myself for his diagnosis. There was a lot of wasted time spent on trying to see if there was a way that I could “pull him out of autism” by finding the magic pill, only to be disappointed and pulled into a deeper depression because in my mind, I had failed my son.
As my husband and I experienced each year of Broden’s life, I realized that I couldn’t freeze time. I had to see him for who he is and love him because he became the child I only knew him to be. If he didn’t have autism, he would be someone different. Instead of asking myself the question, “How do I change my son?” I started to ask myself questions such as, “What can I do to support him now?” or “How can I build a village that celebrates Broden for who he is, and with the right supports, he could continue to grow and learn?”
With the right team and positive collaboration, I learned that ABA, Applied Behavior Analysis, was a therapy that was working for my son. I have been in a conundrum for years because my husband serves in the military, and access to care has been a consistent issue since Broden was diagnosed 14 years ago. My husband and I have worked together to plan ahead, attempting to maneuver within the constraints the military has given us over the years. My husband has extended at installations so our son could continue care and when we were at a point that we had to move, I would research and ask other military families that have children who receive care from ABA clinics, to find the best fit for our son. We have spent years fighting through pointless TRICARE bureaucracy so our son’s access to this life-saving care would not be interrupted. At times, I have asked myself, “Where does it end?” Our family has been fortunate to land at an installation where there is a place for our son, a place where he will not outgrow his village of support.
Years ago, a friend and fellow advocate invited me to attend the Autism Law Summit at Georgetown University. This was the first time I witnessed Lorri Unumb speak; she was the founder of the summit. Years before Broden was diagnosed, Lorri’s son, Ryan, was diagnosed with autism. Lorri saw great improvement in Ryan with ABA therapy, but soon realized that the state of South Carolina, nor any other state, did not provide a law that ensured children with autism had access to autism insurance. After Lorri drafted a bill on her kitchen counter, “Ryan’s Law” was passed in 2007 and started a grass roots movement. Parents from all over the country were contacting Lorri and her husband, Dan, “I heard you had the first bill passed towards autism insurance reform. How did you do it?” This collaborative group of parents and advocates grew over the years and later became the Autism Law Summit. Now this group meets every year and has grown to over 300 members.
In the auditorium that day at Georgetown University listening to Lorri, I sensed a shift inside me in the way I saw not only my journey in support of Broden, but Broden’s journey of growth as well. Lorri said, “Our children are getting older. What are we going to do to support them? We need a plan. They deserve to have productive lives just like everyone else.” After hearing the story about her drafting up the first piece of autism insurance reform, I knew she was a person of action, and I was hooked. She energized me and I was reminded that my son has value as a person and as a member of society. Broden deserves appropriate care and a purposeful life, just like everyone else.
Years later, our paths would cross once again when Mark and I found out that we would be stationed in South Carolina. I remember being in the car at Fort Benning, Georgia, googling ABA clinics when Mark told me that he was officially notified that we would be moving farther east. I saw an ABA clinic, the Autism Academy of South Carolina, that looked promising. As I read their mission statement and services they provided, I realized that this place could be a good fit for Broden. I clicked on the link to see who had founded the clinic. The founder was none other than Lorri Unumb, the same person I listened to at the Autism Law Summit years ago. “Mark, this is it,” I told my husband. “This is the place for Broden.”
Broden has now been a client at this ABA clinic for over three years. His team has gelled and his BCBA (Board Certified Behavior Analyst), Jaime White, has become more than just his Program Manager, she has become a part of our family. Jaime understands that Broden’s life and his family’s lives do not start 8:30 am and end at 3:30 pm. Monday through Friday. She cares enough to be there through not only the times we celebrate the progress Broden has made; she is there through challenging times too. She has continuously kept our quality of life in mind when she is building Broden’s programs and for that, I am grateful. The Executive Director, Anslie Patrick, and her team have continued to push and work tirelessly to build a team to provide the best care possible for their clients. Anslie is always creating ways to better serve the clinic’s clients and listening to parents to find ways to not only provide support to their clients, but also ways to support their clients’ families.
Lorri and Dan Unumb holding the plans for the new campus to include services for adults with autism. Photo provided by Shelly L. Huhtanen
In 2018, the Board of Directors voted to rename the clinic, The Unumb Center for Neurodevelopment while also expanding the services they provide. After acknowledging the gaps in services existing in the area, they decided to work on a solution themselves to support Columbia and its surrounding communities. The Unumb Center, a nonprofit organization, is now utilizing a partnership with Voc-Rehab for pre-employment training, created a psychology department to provide diagnostic services, as well as building a social skills program. Individuals with autism have access to pre-employment and social skills even if they do not receive ABA services from the clinic.
Acknowledging that there is still work to be done, The Unumb Center is currently in the planning process to build a campus that will provide an adult life center to include opportunities for residential living. There will also be opportunities at the campus for employment training and a plan for their clients to put their training to use by providing employment opportunities not only on the campus, but also in the local community. Since the ABA clinic’s opening in 2010, they have not only strived for best practices to ensure their clients receive quality care, but they are also continuously identifying gaps in services and growing to meet client’s and their family’s needs. This not only benefits Broden and Lorri’s son, Ryan, it benefits our entire autism community.
Currently, I’ve been given the opportunity to serve on the Board of Directors where I can be part of the team that is working to build a better and more prosperous future for individuals like my son. Being part of a team that focuses on solutions and who builds relationships in the local community to provide support to our village is empowering and uplifting. I no longer ask myself, “Why me? Why Broden?” Now I tell myself, “I celebrate my son and I can do this with love and support.” I also remind myself that we can overcome anything with the right village.
About the Author:
Shelly Huhtanen teaches Public Speaking at the University of South Carolina for the Pathway Program. Her column, Puzzles and Camo, for EP magazine shares her experiences of raising a child with autism while serving in the military. She has also authored a book entitled, “Giving a Voice to Silent Many.” As a military spouse, she has lobbied Congress for better access to care for military families raising children with autism, and is currently serving on the Board of Directors with The Unumb Center for Neurodevelopment.