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Transcript

Female Interviewer: Thanks for talking to me today. Can you tell me your name, and a little bit about your child?

David: My name is David Hyche and I have a seven-year-old daughter who we adopted at birth. She suffers from ROP. She was born at 26…they estimate 26 to 27 weeks. She was about 1 lb. 13 oz. and at about four months she lost her vision. She has light perception only. She is seven now and doing very well.

Interviewer: That is great. Why did you want to come to the Families Connecting With Families conference?

David: When I first found out about her visual impairment, I understand a lot of parents do the same thing. I had to know everything immediately. I called the school for the blind. I told my wife, “We are going to have to move. We cannot have a house with stairs.” I did not know anything about being around blind people. I think she was the first blind person I had ever met. So, I panicked and had to learn everything.

NAPVI the website and also the ROP website were two places I went. I wanted to talk to a parent, and I was able to find several that had kids with ROP. I think what parents need…what I needed was to find out that life goes on and we will be fine. So, that is one thing through NAPVI and our local Alabama chapter, APVI. What we have tried to do is have parents mentor other parents, especially when you first find out that your child has a visual impairment. The family that we mentored early on had a two month old child, and you could just see the burden on the faces of the family. We invited them into our home. My daughter was two at the time. When they saw her run through the kitchen full speed, and come into the den and say, “Who is here? What is your name?”, you could just see the burden lifted, because they saw a healthy happy normal two-year-old child, who cannot see.

Interviewer: Right.

David: I think that is most important. You can give them all your words of wisdom, but it does not mean as much as actually seeing it in practice. Seeing a happy family with a blind or visually impaired child, or a multiply disabled child. I think that is very helpful.

Interviewer: Absolutely. What would you say has been one of your child’s biggest successes?

David: I think the best thing about Rachel is she is not afraid to try things. One of the first phrases she ever said was, “I do it myself!”

So, we have really worked hard to keep her active. I did notice, when I first started associating with different blind groups, that it is a struggle for blind and visually impaired people to stay physically fit. I am a little bit of a health nut. My wife would say just a nut, maybe not the health part. (They both laugh.)

But, I really have tried to keep her active and it is not that difficult with her. We have tried just about every sport you can imagine and every activity that you can imagine. The failures were funny. She is willing to try anything but we have been able to find some things that she likes to do to stay active, and I think she has come up with some innovative ways. But I think the best thing for us has been her desire to be independent. It is just… It is great.

People congratulate us all of the time for instilling that in her and I am not so sure that that did not just come with Rachel.

Interviewer: Right. What are some of her favorite activities that she is drawn to?

David: I do not know if I would say “favorite” because I have to pay her to do some of these. [Interviewer laughs.] She does aerobics and we do step aerobics. We go through the gym when no one is there, her and her brother. She has a nine-year-old brother.

We put the riser down with the step and I play disco music from the 70s. That is what she likes. And she will step up and down for the duration of the song. Then she gets one minute rest in between, and the number of songs is how long she works out. She does six songs now. She also does the treadmill and we make a hill on the treadmill. I do not know the speed that she goes, but it is a pretty brisk walk and she listens to Harry Potter on tape and does the walk for thirty minute. She gets a dollar for each, and she is breaking me now but… [Interviewer laughs.] But she has a chart at home and she uses tactile stars to indicate how many times she has worked out and how many dollars she has earned.

Interviewer: Great!

David: So, when ever she gets to the level of purchasing a Barbie, there is a little bit of a lull in her physical activity.

Interviewer: I would imagine.

David: When that Barbie’s head comes off, she is ready for another one. [Interviewer laughs.] That is a motivational tool that we use with her.

Interviewer: Yes, absolutely. What would you say, on the flip side, is one of her biggest challenges, or your biggest challenges, as a parent right now?

David: Understanding what it is like to be blind. I mean, even after seven years and after my involvement with…I have been around many blind children and blind adults. Every day we discover something that we are probably not doing correctly, like, explaining water, that you can see through it and things like that. It is always a challenge but I don’t know. If you stay open-minded about it and do not take yourself too seriously; she certainly does not. There are always challenges. But we look at them… You know, the challenges are opportunities to educate other people and to educate ourselves. We try not to get mad at people when they do not understand because we do not always either.

Rachel has a good attitude about it. She is quick to explain to people, especially kids, if they say, “Hey! Your eyes look funny.” or “Why are your eyes doing that?” That has happened to her a number of times. She deals with it very well. She has dealt with bullying a little bit at school too. She deals with it very well, too. She is a little bit on the aggressive side responding to bullies, which I do not discourage that much. She normally does not get bullied twice.

Interviewer: What advice, if any, would you offer to other parents?

David: Find support through other parents. The doctors are great and they do what they do. The teachers are great but most of them are not raising blind children, although some are. Find families that have been a little bit further down the road than you have. AFB is a great resource. NAPVI and the local chapters. There are many other resources. Whichever one works for you, it does not matter. But find some other families and learn from them. You will learn things to do and things not to do also too. I have seen many things with older kids that I want to stop with my child which is… I do not want to say it is great that some other kids have habits that I do not want my child having, but I need to know those things and need to be educated about it. There are some things that blind people do, that blind people do not have to do. If you want to stop that…the social skills, I think are so important today. In my work, I sometimes hire people and I think social skills are important and I do not believe that we should compromise with our blind children or our visually impaired children when we do not have to. If they can learn correct social skills, and learn to be productive, they really should be. I think we should push them.

One thing I always say, when I speak to parents too, is, “Do not decide for your child what they like and do not like, and do not decide what they can and cannot do. That is their decision.”

I know Marla Runyan said just about the same thing last night in her speech. That is so very true because my daughter…if you had asked me, “Will she go to movies?” Before I had her I would have said, “No! Why would she go to a movie?”

“Can she ride a bike?” “Of course not!” Well, she does both. So, I do not decide for her what she likes and does not like. She roller skates. She does what ever she wants. We figure out a way.

Interviewer: Right. Thank you so much for your time. It was great to talk to you.

David: No problem! Thank you.