My Son Thomas is Blind:
Our Journey of Understanding, Acceptance and Advocacy

by Jessica Kovacs

dsc_0390We found out our son was blind the day after he was born. I had an easy, healthy pregnancy and we were completely unprepared for our son’s medical complications. It took evaluations with a pediatric ophthalmologist and a retinal surgeon for us to learn that Thomas has Persistent Fetal Vascular Syndrome and that he would be blind. Basically, his eyes never formed correctly and were filled with scar tissue. The scar tissue was pulling at his retinas and causing them to detach from the back of the eye. Thomas was also born with microcephaly, hypertonicity, and a hyperplastic corpus callosum.

Even with surgery by one of the foremost experts in infant retinal surgery, we could only expect the most basic results, and even those would be a major victory. After five vitrectomy surgeries Thomas has light perception in both eyes. He started without any visual response at all, so to see him turn to a light source is pretty amazing. All those surgeries came at a cost, however; Tom began refusing feedings and we eventually had to get a G-tube.

Blind Versus Visually Impaired

At first we told everyone that Thomas was visually impaired; actually, Thomas is blind. And guess what? If your child cannot navigate his world safely and get where he needs to go using his vision, he is blind also. If she can only see letters in 72-point font then your child is blind too, and she needs to learn Braille if she is physically able. It is possible to read and do homework at that font size in elementary school, but what about when kids start reading novels?

dsc_4665Being blind isn’t really about the ability to see light and shapes or not see them. It is more a level of function. If your child cannot detect changes in the ground like sidewalks and obstacles, he is functionally blind. Today, schools and blindness professionals are reassuring parents that, “your child isn’t really blind.” Sometimes that’s what parents want to hear, and unfortunately, children are not being taught the skills they need.

Most vision problems are progressive, and having visually impaired children rely solely on their poor vision to function in our world is just setting them up for frustration and failure. What children need are the blindness skills that will allow them to keep up with their peers and participate in everyday life.

We did cling to the label visually impaired at first. It was easier to say than telling people our son was blind. When you tell strangers your child is blind they immediately say, “Oh, that poor little thing.” What they forget is that child can hear them! I do not want my son to grow up thinking he is a “poor little thing.” So now I tell everyone that my son is blind and I say it with a smile. I want them to understand that being blind is perfectly OK. More importantly, I want my son to know that it’s OK to be blind.

Advocating for Blindness Skills

So what changed? Our perception of the word “blind” changed, as did our acceptance of it. The more I read and researched about people who are blind and saw the everyday things they could do, I realized that blindness isn’t so scary. It is just one aspect of my son. It does not define him. I began to understand that with the proper blindness skills, he could someday read at grade level using Braille, or run around on the playground using a cane.

dsc_4421People will tell you that your child doesn’t need Braille or a cane. “Those are outdated, and no one uses them anymore.” What they often mean is, “I don’t know Braille,” “I don’t want to pay for a Braille teacher,” or, “I’m not confident enough in my own skills to teach Braille or cane usage.” And that is coming from professionals working with the blind community! Sadly, due to these attitudes, a great many children with visual impairments are graduating from high school illiterate.

Once my son began walking, I requested an orientation and mobility specialist from our Early Intervention provider. I was surprised when he didn’t want to teach my son to use a cane. He was telling me that my son was the “blindest” child he had out of 40 children, but he didn’t think a cane was appropriate. These are the attitudes you will come up against, but only you know what your child needs and you must advocate for them.

Braille and cane skills are freedom for your child. As long as sighted children are reading and writing, then children who are blind should be reading and writing Braille. The act of reading and writing teaches children sentence structure and spelling and that is a vital part of literacy. Listening to audio books is not the same a reading a book. In all my research I have never heard of anyone regretting he had learned Braille. On the contrary, I often encounter adults who are visually impaired who regret they never learned it! Remember, sometimes technology fails and computers crash. Braille always works!

My son is only two and a half, so our journey is just beginning. I know that I need to give my son the tools he needs to prepare him to live in a visual world. I know I’m going to be “that Mom” and that’s OK with me.

Author: Jessica Kovacs • Date: 2/17/2012

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