When Finn turned three in September he aged out of the early intervention system just as all children with a disability in our country do under the Individuals with Disabilities Education Act (IDEA). As part of this federal law, the school system takes over services for children with disabilities at age three — this is when the often nerve-wracking IEP meetings come into play and all services move from in-home or community-based settings to school-based settings.
Due to Covid, Finn’s transitional and first IEP meeting was delayed, but the end to our early intervention services was not, and the transition occurred immediately on the day before his birthday. For most children in the early intervention system they are seeing a multitude of service providers — for Finn that was his Teacher of the Visually Impaired (TVI), Occupational Therapist (OT), Physical Therapist (PT) and Speech and Language Pathologist (SLP). I know without a doubt, that having these critical services over the last three years have been hugely instrumental in furthering Finn’s cognitive, social, emotional and physical development. Had we waited until now to begin these services, he would assuredly be at much greater developmental delays and at a greater disadvantage entering the school system.
When Finn was born, our pediatrician quickly referred us to early intervention. I’m so thankful for that and that early intervention exists as the first line of defense for parents like us. We were told that we’d be provided with services to help support both us and our newborn son. That was true. BUT, the part that neither our pediatrician nor we understood at the time was what specific services we actually needed. Standing there in his office, neither he nor we had ever known a blind child before Finn.
We enrolled in early intervention and we were told that we’d be given a Developmental Therapist (DT) to come to our home and work with us to ensure that his development would progress. When the DT came to our home for the first time, I was so thrilled to have someone coming in to tell me what to do — to tell me how to raise a child who was blind! Unfortunately, I learned within minutes that she had never seen a blind child before either. I was at a loss and felt like every place I turned for help and information, kept leading me to a dead end. I mean no disrespect to our, or any, DT. She was knowledgeable and helpful in many ways – she just didn’t have the specific knowledge and support I so desperately needed at the time -knowledge about children with blindness.
I did my research and soon learned what TVI and Orientation and Mobility Specialists (O&Ms) were. I’d never heard either of those terms despite having a Masters’s in Education Policy — or if I had, I hadn’t retained the information having no idea how important one day that information would be for me. After learning that these two roles were of the most important for children who are blind, I began advocating to secure these services for my son. It took the better part of six critical months, but I was eventually successful in getting a TVI “on loan” from the Tennessee School for the Blind to come and work with us and our son through early intervention. Now three years later as those weekly visits in our home stopped (Finn now has a new TVI through a school-based program), I look back and know just how crucial having her support was for us. She taught us how to pick our son up without alarming him as a newborn, how to motivate him to crawl and walk, how to help him navigate his way around our house, how to use textured tape at the top and bottom of our stairs to alert him to their presence ahead, how to braille his books, what a pre-cane was, and so much more. She wasn’t there to teach my son — she was there to teach us and that’s exactly what we needed.
I know that not every parent or caregiver out there raising a child with a visual impairment knows that having the services of a TVI is not only critical, but their right. I know that not every parent or caregiver may be able or willing to fight for a TVI if they are not given one because of the energy and time it requires at a time when energy and time are scarce. I know many parents or caregivers who try to secure a TVI often give up because they are told it’s just not possible due to a nationwide shortage of these providers. I also know what it’s like to be struggling with acceptance of a diagnosis, to be on an emotional roller coaster and in the midst of a slew of seemingly non-stop medical appointments and just wanting for something to be easy. To not want to put up a fight.
When Covid hit, I was fortunate to keep my job in marketing, but work was slow and my frequent travel came to a halt. If there’s been a silver lining for me in this pandemic, it’s that I had more time with my children and more time to deeply self-reflect. I decided to start taking some classes online through the University of Kentucky in their TVI program. I wanted to learn Braille and potentially other information that could help me support Finn in the future. During class one night, there was a speaker from an amazing program in Kentucky called VIPs, or Visually Impaired Preschool Services. VIPs offers early intervention, family support, a preschool and a family resource center for all children in both Kentucky and Indiana born with visual impairments. I was blown away and kept thinking to myself how wonderful it would have been to have had a VIPs in Tennessee when Finn was born.
Soon thereafter I connected with my friend, Stacy, also the mother of a young boy who is legally blind. I started telling her about my classes and about VIPs, which ironically she already knew about and had even attended a family retreat there years before. Over the course of the next few weeks we started brainstorming about how we could make things better for families like ours in this state. We decided to take a chance, join forces, and do what we could to make things easier for the families who will walk this path behind us.
In October, Stacy and I founded Blind Early Services TN, also known as BEST, a nonprofit organization supporting families of children, ages 0-5, who are blind or visually impaired. And as you can probably guess, we are modeling ourselves after VIPs and other agencies in other states who have paved the way in supporting families of blind and low vision children in our country. We have been so fortunate that VIPs and so many others like them have been generous with their time and resources to ensure we get it right — lifting us up and pushing us forward so we can bring much needed comprehensive services to our state. We want the first words for families to hear after the often devastating words, “your child is blind” to be, “but there is a place to turn and it is called BEST.”
BEST currently offers three programs free of charge to families in Tennessee: BEST Together, our family support program; BEST Start, our early intervention program, and BEST Transitions, our advocacy and IEP support program. One day we hope to expand to preschool services too. In the meantime, I’m proud to say we have recently been awarded a three year contract with our early intervention system to provide direct services. What this means is that we get to work within the system that helped us greatly, but that we also get to help them fill the gaps that we learned first-hand existed for families like ours. We are grateful that the state recognized those gaps themselves and took a chance on a new organization run by two moms on a mission.
What can you do to help? Follow BEST on social media (links below). If you know of any families in Tennessee with children who are blind or visually impaired, ages 0-5, please tell them about us. If you know of any providers working with children with disabilities in the state of Tennessee, please tell them about us. And if you feel so inclined, donate. We want the BEST start for the families of children who are blind or low vision in Tennessee! Help us in our mission!