Editor’s note: Meredith Howell reflects on learning that her daughter, Lola, has low vision and multiple disabilities. She looks back at the value of early intervention services and shares that she is now the regional director of Visually Impaired Preschool Services (VIPS) Indiana.
When I was told my daughter, Lola, at the age of seven months, was visually impaired due to a brain-based visual impairment called Cortical Visual Impairment, the doctor was simply affirming something I had suspected from the moment Lola I laid eyes on Lola after she was born.
While I was a first-time expecting mom and giving birth in a foreign country (my husband and I were living in Costa Rica), I knew something was wrong with Lola’s vision. I had expected us to make immediate eye contact. Instead, Lola looked anywhere but at my face. In fact, when she did take a glance at me, it was as if she was looking right through me. She wasn’t seeing me. I knew it.
But I was told vision develops during the immediate days after birth, and I wasn’t to worry. My husband and I took the doctors’ advice and left the hospital, hopeful that Lola’s vision would improve. Over the next few weeks, we didn’t see any improvement. And again, at her check-up, we were told it was nothing.
Then our world was turned upside down when Lola had her very first cluster of seizures at four months old. We didn’t know they were seizures immediately, but an EEG would soon confirm that Lola had a rare and catastrophic form of epilepsy called Infantile Spasms. These seizures would set back her already delayed development. We watched the tiny spark in our daughter fade as the seizures took over her tiny brain. Thankfully, a neurologist in Costa Rica, Dr. Luna, knew the grave future our daughter would face if we didn’t get the seizures under control. She was put on a steroid, and an anti-epileptic drug, and the seizures got far worse before they eventually faded. Dr. Luna would go on to order CT scans, MRIs, and more EEGs, and he’d refer Lola to physical therapy and a pediatric ophthalmologist.
It was at that ophthalmology visit that our assumptions were confirmed. Lola was legally blind, but the good news was that her vision could actually improve through early intervention. Armed with this new information, we immersed Lola in physical therapy and occupational therapy, and they even worked on Lola’s vision. It was amazing to see Lola’s hard work start to pay off as she reached new developmental “inchstones” each and every week.
Long-term, we knew that Costa Rica would not be our forever home, and to give Lola access to the best healthcare, we decided to move back to our house in Indianapolis. And now, ten years later, I can say that we’ve been on quite the journey with Lola. After returning to the states, we immediately enrolled our daughter in the state’s early intervention system, First Steps. And after a search, we finally found Visually Impaired Preschool Services (VIPS) to address Lola’s visual needs. The early intervention that Lola received would be instrumental in her development and growth. We can’t express the extent of our gratitude to the individuals who came into our home to teach and guide us during some of the darkest times in our lives. VIPS especially gave us the hope we needed to go on to become the best parents we could be for Lola.
Paying it Forward
Today, Lola is a thriving 11-year-old. She is feisty, hilarious, kind, and incredibly bright. She would go on to receive a diagnosis of a rare genetic disease called Bosch-Boonstra-Schaaf optic atrophy syndrome, explaining all of the medical conditions that continued to pile up on our girl. All are manageable, thankfully, and she is a pretty healthy kid overall.
I now work for VIPS as the regional director, and I’m so thankful that I get a job where I can advocate for services and education for families like my own. It’s been a whirlwind of an experience to take something so painful and confusing and turn it into something positive for someone else. I can’t say that raising a child who is low vision and has multiple disabilities has been easy; it’s been anything but. Yet, I’m grateful for all that Lola has been able to accomplish and all that she continues to do. I wish I could have told past-Meredith everything would be OK as I spent so many of her childhood years worrying. But that’s all part of our story.
No one could have predicted how much Lola would show the world she was on her own path. I’m just excited to be right by her side every step of the way. She is an outstanding individual; I’m so proud to be her mom!