An Interview with Cynthia (Jack’s Mother)
My name is Cynthia. I’m the mom of Jack. Jack is our 10-year-old who came to us from China when he was nine. And when he was in China, he didn’t have really any special vision services in school, so what he had learned was what he had learned in an auditory fashion. Jack has coloboma in both eyes, which means his eyes didn’t form totally when he was in utero, and as a result, he has strabismus and nystagmus and resulting in pretty low vision.
What part of the journey with your son has helped him the most to be successful in school?
The fact that the school system Jack was placed in, in 4th grade, when he came, the school system insisted on placing him in the appropriate grade because they felt he was bright, and they wanted to work with this kid and get him up to speed quickly. They wanted the challenge of working with a kid with low vision.
They believed in him, and they have continued to believe in him. They expect the most from him, and his low vision teacher, his adapted P.E. teacher, everybody—his ESL teacher, his classroom teacher—people are so willing to work together as a team, and they expect him to do everything he possibly can, and they are always working together for his independence. It’s just incredible.
What has been the best opportunity for your son to learn about mutual respect for others and self-determination skills?
Again, I would have to credit the school in which he has been placed for helping him gain these skills because he is in what the principal had told us originally is a very welcoming group of students. They’ve always been kind to him. It’s very racially diverse. It happens to have an autism department in the school for students who face that particular challenge. It’s a very accepting and welcoming place and that has really helped us focus on the fact that Jack can do whatever he wants to do, and he will.
What resources have you found to be helpful in the education of your son?
Being in the DC area, it has helped so much to be near so many of these incredible national organizations. I find myself drawing from each one of them and also the resources of the other parents. Like, one of my fellow parents of a low vision kid said “only the parents really get it, we really need each other.” And just to continue to network and exchange ideas with other parents of kids with low vision, and we exchange by e-mail all the time any communication anybody gets from AFB or whatever organization, and maybe one of us will go to a conference or a meeting or a presentation, and we get together and exchange ideas. So I find these incredible resources. Just keep reading and networking.
And also I have found that I’ve gotten to know a few people who are totally blind and some with low vision. I am low vision myself, and that certainly helps too.
What tips do you want to share with other parents about rearing a young child with a visual impairment?
It’s so important to make sure this doesn’t become the focus of the kid’s identity. Our kid has low vision, but he’s also a very talented, able, wonderful kid. And we want him to know that the low vision isn’t such a big part of who he is. We just have to work with it.
And so, I think it’s important to keep that in mind and also to do little things like try to anticipate where he might need an extra tip. Like when we went to scout camp, we put little orange flags around the tent lines so that he wouldn’t trip and embarrass himself or hurt himself. And little things like that. To always kind of be aware of how things are looking through his eyes, because when a kid has…not blind but has functional vision—but low vision —there is no definitive line as to what his needs really are, so we have to be constantly looking at what we can do to be helping him but not making a big deal about it in front of him.
Is there anything you could tell parents that might have a child where English is a second language that would be helpful to them?
Yes, it’s interesting, some of these students—I’ve heard of others in the community too—that have come from foreign countries where they haven’t had low vision services, and they don’t know English, so basically they are a tabula rasa—a clean slate. They really haven’t had much education. So they’re learning the language as well as all the skills that will make them independent. And then, then, these things all take time so your student’s learning English and then if they’re going to learn braille, that is going to take a substantial time away from the schooling. And that’s a big question within the school system whether to really concentrate on the braille and suspend everything else for a while or do it while they’re trying to learn English as a second language (ESOL). And the reading is such a challenge with the low vision kids, and it’s not cut and dried as to whether they should have braille or not. But the ESOL is an additional time commitment for the student.
Is there anything you’d like to share with other families?
Well, something that concerns us now would be the social skills because the low vision kids are somewhat left behind by the kids that have more mobility and vision, and that is a concern. The low vision little boys we know usually play with the girls because the boys leave them in the dust for the most part. And they want to play with the other boys. So that’s a real concern for us as this point.