Today we’d like to introduce you to Alison Clougherty.
Hi Alison, we’re thrilled to have a chance to learn your story today. So, before we get into specifics, maybe you can briefly walk us through how you got to where you are today.
My son, Finn, was born in 2017 after a full-term, no-complication pregnancy. Before leaving the hospital, we were told that something looked atypical with his eyes. After a string of doctor’s appointments in his first few weeks of life, we learned that both of his retinas were completely detached. Finn went through MRIs, blood tests, appointments with specialists in multiple states, several rounds of genetic testing, and even two surgeries under anesthesia all before he was 9 weeks old. Finn is now five years old — he is happy, healthy, and thriving – he also happens to be completely blind. Those early months of adjusting to becoming a mom for the first time, coupled with the shock and worry of learning of Finn’s blindness, were some of the most difficult of my life. When I enrolled our family in the state’s early intervention system, I quickly learned that although there were a plethora of services available to us (developmental therapy, speech therapy, occupational therapy, and physical therapy to name a few), there were no vision-specific services which is what he and our family needed most.
Finn was the first person with blindness I had ever known and I needed a specialist to show me the way in how to ensure he had the best start in life possible, and a bright and independent future. After a lot of research, I learned that we needed a certified Teacher of the Visually Impaired (TVI) and a certified Orientation and Mobility Specialist (COMS) to help Finn gain access to the world around him in a safe and purposeful way. Unfortunately, due to a shortage of these providers nationwide and a lack of them working in early intervention, I was repeatedly told to wait until he was school-age. I was not going to wait it out and let my son lose those opportunities in those early and crucial years of development, especially when he was missing our most integrating sense, After much pushback, I was lucky enough to get an amazing TVI from the Tennessee School for the Blind who came to work with our family every week after school hours in her free time. I kept thinking, “what about all of the other families in Tennessee? what about those who aren’t in the backyard of TSB or who don’t have the resources, knowledge, or emotional bandwidth to learn what they need and are legally entitled to?”
At the time, I was a marketing director and I was traveling all the time for work. I knew that it was time to make a change and do more for not only my own family but others like ours. I made the decision at age 40 to completely switch careers. I went back to grad school to become a TVI and I joined forces with another mom on a mission, Stacy Cornwall, to create a nonprofit called Blind Early Services TN (BEST). We are now 2 and half years into our nonprofit agency and are proud to serve 130 families across Tennessee by providing vision-specific early intervention services and support. I am the Executive Director of our Programs and Services, managing our team of TVIs, O&MS, and Developmental Therapists. We also provide resources, in-person connections, and events, and even host a podcast to help families like ours anywhere. We want all parents of a child with blindness to know that they are not alone, that there is hope after a vision disability diagnosis, and that our children do deserve specialized services and support.
Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
There were so many struggles! The first was just accepting my son’s blindness and even being able to say the word blind. I had many misconceptions about what that word meant and what his future would hold. Luckily, he taught me at every turn that those were wrong.
Another was finding the strength to fight for what he needed and I don’t think this ever stops. There are many laws to protect those with disabilities, but resources are stretched thin, and changing perceptions of others is a constant battle. Creating a nonprofit is a huge challenge and one I knew nothing about. Luckily I had a partner and our two very different skill sets allowed us to lift each other up and propel ourselves and our mission forward.
Alright, so let’s switch gears a bit and talk business. What should we know?
We are a nonprofit providing early intervention, family support, resources, and advocacy for families of young children (ages 0-5) with blindness or low vision. These are children with visual disabilities that cannot be corrected with glasses, surgeries, or other interventions. Our job as TVIs, O&Ms, or Early Interventionists is to educate and train the families on how to best support their child and how to give their child access to learning about the world around them without visual input.
We are the only vision-specific early intervention agency in the state. We are so proud that in only two years we have reached 130 families, helped immensely by our contract with TEIS and our relationships with local ophthalmologists, optometrists, and other medical professionals. Yet, we know there are so many more families out there in need of support or soon to be given a diagnosis. When they hear the words that their child is blind, we want the next words they hear to be, “but there is a place to turn and that place is called BEST.”
Are there any books, apps, podcasts, or blogs that help you do your best?
Shameless plug for our podcast which is called BEST Together and my own blog which is called Seeing Things In a Different Way.
We could not have created BEST without the support of other agencies like ours — A Shared Vision in Colorado, VIPS in Kentucky/Indiana, and Anchor Center for Blind Children in Denver to name a few. Anchor Center has its own podcast which is also great. There are many Facebook groups for parents of blind children that I always point families to, including one we created specifically for Tennessee.
Contact Info:
- Website: www.blindearlyservices.org
- Instagram: http://instagram.com/seeingthingsinadifferentway and instagram.com/blindearlyservices
- Facebook: facebook.com/blindearlyservices
- Linkedin: https://www.linkedin.com/in/alison-clougherty-04a66b9/
- Youtube: https://www.youtube.com/@best743/videos
- Other: https://linktr.ee/blindearlyservicestn
