The First Steps

As our son’s vision diminished our world was expanding to include Retinal Specialists, Orientation & Mobility (O&M)  instructors and Teachers of the Visually Impaired (TVI).

We were totally new to this world of visual impairments and had no idea how our son would be able to continue to thrive in school. Our older son had no disabilities or conditions requiring special services, and we were overwhelmed and completely ignorant about the process of obtaining proper services through the school system.

The road to obtaining appropriate services at school has not been easy. We live in a small town, hours from a big city, and Kai is the only child in the area with a degenerative eye disease. The school administration’s answer to every question seemed to be “We don’t know. We’ve never done this before.” And neither had we. I was determined to give Kai every opportunity to succeed. I kept drinking coffee, searching the web, crying, talking to other parents and taking the next best step.

After Kai’s RP diagnosis, the very first steps in school were as follows:

  1. Functional Testing to find out exactly how our son was utilizing his limited vision. Public schools are required to provide this testing free of charge to VI children. Do not allow this step to be skipped. Often times parents are told “they don’t need this yet” but without functional testing, there is really no way to know what your child needs. Insist on it.
  2. Creation of an Individualized Education Program (IEP) outlining specific accommodations to provide Kai with the same educational opportunities as his sighted peers.
    • The current accommodations were clearly outlined. In those early days, accommodations consisted of items like magnifiers, large print, testing in a quiet environment, the assistance of an administrator who could help him read long sections of text or describe complex diagrams that were difficult for him to access with his limited vision. He was given extra time to complete assignments and tests.
    • Due to the degenerative nature of Retinitis Pigmentosa, goals were set to prepare him for accessing classroom materials in the future — a future without sight. Our motto has become “Prepare for blindness, and hope for a cure.” This motto has served us well, as Kai’s skill set has always been one step ahead of his sight loss.  Our son’s initial IEP included weekly sessions with a TVI who taught him introductory Braille and how to access assistive technology. He also received monthly O&M lessons to introduce cane travel.

The process has not been clear-cut or easy. Some days we feel like the battle to obtain and keep services is just too intense. And sometimes we question our decision to keep Kai mainstreamed in our local public high school.  We have visited schools for the blind and found some to be excellent — others not so much. Since Kai is a gifted student with a strong group of friends, we believe that staying in his local public school will be his best route to higher education and employment.  But,  mainstreaming only works when the parents partner with the school system to ensure that proper services are provided and that the student is motivated, challenged and engaged.

If you have a VI/Blind child and have gone through this process please share your experience in the replies section below. If you are a parent who is just embarking on this journey please join in the conversation with questions or comments. I’d love to hear from you!

“Our chief want in life is somebody who will make us do what we can.” — Ralph Waldo Emerson

10-year-old Kai sitting at a table, next to his teacher of the visually impaired, his hands are tracking a Braille worksheet. On the table sits a Brailler and a large CCTV screen displaying instructions for using the Braille keypad.

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