It Takes a Village: Even in a Pandemic.

As the pandemic throws curve ball after curve ball and families and schools struggle to  adapt we, at Navigating Blindness, are excited to launch our new series entitled “It Takes a Village.”  Today we will hear from Sarah Immerfall as she explains what her son’s village looks like in the midst of a pandemic.

We’d love to hear from you too. If you’d like to share your story, please reach out for specifications using our contact form. Thank you!

Guest Post by Sarah Immerfall

Hi! My name is Sarah and my son, Siah, was born completely blind. He has a condition called Oculoauriculovertebral Syndrome that caused microphthalmia and he wears bilateral scleral shells. He just turned 4 and is finally past a lot of medical treatment for issues unrelated to his vision, and we are so excited to focus solely on his progress!

Every day looks different for us, but we try to always incorporate sensory play, orientation and mobility practice (with physical therapy), and pre-braille skills. Outpatient therapies had been unsuccessful for him in the past because the therapists didn’t have experience working with a child who is blind, and Siah had a lot of medical trauma that didn’t allow him to get to know and trust new people in the short time they had. He has really shown great progress in this area and we were excited to start at a school for the blind near us this fall. Speech, physical, and occupational therapy are super important services he needs every week. Unfortunately, because of the pandemic, we are back to creating our own “village” for learning at home until things are back to normal! I’m very aware that I’m not a therapist by any stretch, but I am dedicated to using the things I’ve learned to be intentional about each part of our day. So many families have lost their child’s services due to restrictions, and parents are taking on these responsibilities to continue their child’s progress. I know its so overwhelming, but between connecting with some amazing TVI’s in our area and taking classes in the visual impairment program at the University of Kentucky, I’ve been able to find some things that help bridge the gap. Here are some of the products and tools that have been successful for us while we wait to participate in traditional therapies or classroom instruction again.

For combining sensory play and pre-braille skills, we created a sensory room with some toys that are developmentally appropriate and encourage incidental learning. A few of the things we felt really helped him were a foam ball pit, a sensory swing, and lots of different tactile and auditory toys that encourage cause and effect learning. Many of these toys have encouraged him to hold his hands and feel the texture in a similar motion to reading braille. Click here for the list of our favorite toys for his age or developmental range, including some amazing toys from Fat Brain Toys that include Braille on them. Many of their toys are inclusive and work on motor development that would help with using a brailler!

Sensory Toys 1
photo description: a wood table with several brightly colored sensory and tactile toys laid out, showing what has worked to help our son make progress.
Sensory Toy 2
photo description: a close up photo of a shapes and colors toy with tactile shapes and braille colors written out.

Siah especially loves music, so we wanted to encourage independent participation in choosing music or audio stories. I was able to use the Jooki kid’s speaker with special “coins” to create tactile playlists and record our own audiobooks. When you turn the speaker on, you can choose a playlist or audiobook from the tactile coins and set it on the center circle of the speaker. It automatically starts playing and stops when the coin is removed. Each of his coin’s tactile symbol corresponds with a book character or type of music playlist. Now he can independently choose and change what he likes or turn on his bedtime playlist. This can be helpful for kids who are pre-braille, non-verbal, or have multiple disabilities. I am hopeful this will make transitioning to tactile symbols easier when he attends school.

book 1
photo description: the Jooki speaker in the center of a table with special audio coins laid around it that show how this toy works for independent use in young children who are blind.

For orientation and mobility, I wanted to find a walker-like device that would give him the extra support he needs for the asymmetry in his body, but also work as an anticipator for pre-cane skills. Siah has physical differences and needed more support than just a perimeter around him to learn when he was going to run into things, but traditional walkers didn’t give him the freedom of movement he was capable of. We are excited that the Crocodile Gait Trainer can give him that security to move from holding onto me, to getting around in places he isn’t comfortable or familiar.

Some tools and services are specific to each child’s needs and abilities, but this early preschool age or development is a lot like their typical peers in that they need to be given opportunities and experiences that allow them to explore and feel independent in whatever way works best for them. Our village has changed a lot since March, and we are so excited to get back to the amazing therapists and TVIs that support and encourage us. But for now, our village is with all the other parents like us, sharing their experiences, tips, and tools that work for them! This is an amazing community and I’m so thrilled to be a part of it. Thanks for being a part of our village – I’d love to hear what works for you and how this pandemic has affected your services and progress. You can follow along our journey on Instagram at @wolfebrothersco

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