FamilyConnect

Editor’s note: This blog by Sara Edwards, TVI, DT/Vision Specialist, Evaluator – IL Early Intervention Program, is a preview for the upcoming Family Connect and Illinois School for the Visually Impaired webinar, Tips and Techniques to Develop Pre-braille Skills in Toddlers, on Monday November 16, 2:00-3:30pm Eastern – eligible for ACVREP credit. Register here. Find other upcoming webinars and community events across the field on our ConnectCalendar.

When we are told that our child has a disability, our lives take a different course than what was expected. As parents and caregivers, we all work through that process in our own unique way.  We all seek answers to similar questions. What can we do for our child? What does our child need to learn? What does their future look like? My story is no different.

When my son was a few months old, we noticed large roving eye movements. We were referred to specialists that had diagnosed him with congenital nystagmus and later cortical visual impairment (CVI). We started receiving Early Intervention services and worked closely with Vickie, our vision developmental therapist (DT/V). As she continued to work with Ethan however and learned more about his abilities, she did not agree with the CVI diagnosis. She thought he had Lebers Congenital Amaurosis (LCA). At this time, we had already sought care from the pediatric ophthalmologists at the University of Iowa. We shared our DT/Vision’s concerns with the team, and they ran more tests, including an ERG. And yes, our DT/V was correct. When Ethan was 18 months old, he was officially diagnosed with LCA. We were told that he “may” have light perception at best. My husband and I were heartbroken. We were devastated. We sat in our car at the University of Iowa’s medical center in silence. Then we agreed to something: our course had changed but it was OUR path and it would be okay. We agreed that we would allow ourselves to be sad for the 3 hour car ride home from Iowa but then we had to move forward and do what was best for Ethan. We had to make sure he got what he needed despite our heartbreak for him. We had to find answers for those questions: What can we do for Ethan? What does he need to learn? What does his future look like?

My story does not end there. When Ethan was about 2 ½ years old, his baby sister was welcomed into this world. I knew she had LCA too – mother’s intuition. My husband asked me when Elissa was only hours old what I thought. I remember saying “she has it” and him responding “I think so too”. I was told by family and friends that I was “paranoid”, “nervous”, “she’s fine, her eyes don’t wander”. But I knew differently. When she was a couple of months old, we took her with us to one of Ethan’s eye appointments. The doctor confirmed our suspicion. She had LCA too – light perception at best. Of course, we were sad and heartbroken for her just like we were for Ethan. Another car ride home from Iowa where we allowed ourselves to cry, to be devastated, to grieve. The same questions came back: What can we do for Elissa? What does she need to learn? What does her future look like? But this time, our path didn’t really change. We stayed the same course. We just had another one along for the ride and we had a little more experience.

So, what did my children need? What did they need to learn? What did their future look like? They needed to start preparing to become braille readers and writers. Prebraille skills are critical. Not only do they prepare them for braille instruction, but they help build concept development, motor skills, as well as auditory and tactual discrimination. They are never too young to begin developing the skills that will only benefit them as they advance into school age programs. Ethan and Elissa both worked with Vickie in Early intervention and started showing progress in the necessary prerequisites. The braille learning process is challenging, and it begins with strengthening their hands and fingers, finger isolation, and bilateral hand use. Ethan and Elissa needed to start early so they could learn to read and write braille alongside their peers learning print when they entered an Early Childhood program.

The best thing about incorporating prebraille skills into our children’s young lives is that it occurs during play and exploration. Playing with toys that they must manipulate to activate – maybe pushing buttons or turning handles to activate music. Exploring different textures with both hands to learn about their environment – is that blanket soft or rough? Pushing objects into openings of containers. Pulling straws out of a colander.  Squirting water out of containers. Painting. Exploring books with braille and textured pages. Putting puzzles together. These are just a few examples. The point is that helping our little ones become prepared for braille instruction occurs in almost all play and exploration activities.

We were put on an unexpected course almost 18 years ago.  We still have questions, but we have some answers now too. What could we do for Ethan and Elissa? We had to make sure they were provided with experiences that allowed them to safely play and explore. What did Ethan and Elissa need to learn? They needed to learn prebraille skills to be prepared for braille instruction so that they could read and write alongside their sighted peers. What does their future look like? Ethan and Elissa are both in high school now learning in classes alongside their sighted peers. They advocate to get all of their materials in an accessible format – whether that be braille or digital. They are fluent braille readers and writers because they began that process as toddlers just playing like kids play. They are successful and independent because they learned braille. My story of raising two successful and independent braille learners may be nearing an end but the best part is – their stories are just beginning.