A Mother's Advocacy

The following remarks were delivered to the NFB of Virginia state convention on November 4, 2017 by Gao Lai.

When my son was 6 months old, the doctor said my son would never be able to see the world like me. It was scary. My mind was flooded with questions. I can tell you my biggest
worries were how will my son be independent and take care of himself when I die? Will he graduate from college? Will he have a career? Will he ever move out of my basement? How will he get around? I was looking at a 6-month-old and I was petrified for his future.

My name is Giao. I am a mother of a legally blind child. My son drops the word legally and just identifies himself as blind.

When my son entered our local school system, I had no real knowledge or support other than what came from the school district. I put all of my trust in them. And in return, they did not provide Braille or cane training. Instead, they just passed him from one grade to the next while he fell further and further behind.

Although my gut instinct told me that wasn't right, I told myself they were the professionals and Maybe my son could only do so much, and it made me even more worried for his future.

When my son was 2 years old, someone told me that I would be his biggest advocate when he started school. I would be his voice starting out. I can tell you I had no idea what she meant until last year when my son was in 3rd grade. I remember telling one of the school supervisors, “maybe I need to start looking at the school for the blind? Maybe, he needs to be around people that understand him and in a place that can properly educate him.” I remember her saying to me, "we cannot go that route, because we haven't provided everything this county had to offer."

What did she mean, “We haven't provided everything this county had to offer “.

My son had been in school for 4 years, everything should have been provided! I was angry, but someone told me don't get angry, get educated. That's when I realized I needed to do more.

I needed to go with my gut feelings that had started 4 years earlier. I started reaching out to anyone that would help, and started educating myself about the services for blind children like my son that still has some remaining vision.

There is a misconception that children with some vision should use it to do everything whether reliable or not. Unfortunately, the truth is that the reading volume will continue to increase while the fonts get smaller throughout his education.

My son loves to write. But, he was unable to put everything he wanted on paper, because he could not see enough to write what he wanted or to read what he had written.

My son loves to read. But, the only books he could choose were those at a kindergarten level because of their large font size.

The school wanted to continue educating my son with audio and print materials utilizing his remaining vision. He began to suffer from eye fatigue and headaches after school. Having someone else read to my son was taking away his literacy. I believe my son needed to learn Braille and cane skills while he learned alongside his sighted peers.

Every day I had off from work, or in my spare time, I was running my son to an evaluation to prove my district was wrong. I went to different doctors for second opinions to back up what he needed. I reached out to the NFB through the NOPBC Facebook page, as well as other sources. NOPBC and others provided the advocacy and support I needed so desperately. I was not going to stop pushing for a better education for my son until he got what he was entitled to. I had strong advocates from NFB who supported me every step of the way. They would back up my demands and provide information that reinforced my gut feelings. They were with me at the meetings and were available between meetings. It took 7 long months, but last April we walked out with the strongest IEP my son has ever had.

Last summer, my son participated in the BELL Academy and loved being with blind adults and children. He was around confident blind adults he could look up to. He wants to learn Braille because he knows it will help him for the rest of his life.

I can tell you today that I no longer fear for my son's future. I am excited about how far he can go with Braille literacy and a white cane on his journey to be an independent productive adult.

I am not saying that by doing all of this my son will succeed, but to succeed or fail should be solely his choice. not because the school system or I failed to equip him for his future. This is your child's future, don't settle for less.


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