Future Reflections        Convention Issue 2013

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Parent Power

by Rosina Foster

From the Editor: Rosina Foster is the mother of two blind sons, Roman and Ethan Solano.  She is an active member of the Missouri Parents of Blind Children and serves on the board of the National Organization of Parents of Blind Children (NOPBC).  She gave this presentation at the NOPBC board meeting.

Rosina Foster learns blindness skills under sleepshades.When I was first asked to talk on this panel, I really wanted to refuse. With those who know me I am a ham--that is, when the topic is about me. I feel differently when what I say can affect others. The fact that others might listen to me with the intent of using what I say in their lives is scary. However, I feel that this is a terribly important lesson about the power we all have, power we don't know we have most of the time.

First I have to give you a little background about myself so you can understand the power that was released in me. I was raised to respect my elders and those in so-called power. One never talked back, one never openly challenged authority, and one always understood that adults knew what was right and best. It was okay to have your own opinion, but the message was, "Keep quiet, don't make waves, and be good." My father was a teacher, and he always knew best. So as an adult I was well versed in not bucking the system.

This training is difficult to overcome sitting in IEP meetings, surrounded by professionals. I disagreed many times, and I grumbled quite a bit, but never openly or disrespectfully. My school district probably loved working with me back then. I wasn't a doormat, but I always saw their point of view in everything.

So when did that change? It is hard to say, but that is part of the story of my journey to power.

My school district never refused services. We had our own TVI. I have heard all the horror stories, so I was sure that I was awfully lucky. Not only did we get Braille services, but we got plenty of time with the TVI. We lived in a school district that always asked me what I wanted.

When I first met the NFB I really didn't NEED the NFB, or so I thought. I loved the NFB and everything it stood for, but I didn't NEED it. I already expected my kids to pull their weight; I was getting services; so hey, everything was good. I loved the people and the programs of the Federation, so I was still there.

But we began to grow. When my oldest, Roman, was in middle school, I began to ask for technology. Our school got Roman a notetaker, but didn't teach him how to use it the first year. The second year he learned to open and save a file on it. Looking back, I am disgusted with myself for not taking a firm hold sooner—but hey, I couldn’t buck the system too much. I was getting services, right?

Then Roman started to balk at going to his O&M lessons. He was being pulled out for one hour a week and once a month for a day-long trip to work with other blind kids so he could interact with his blind peers. Roman complained that he didn't learn anything new and that he didn't like missing so much of his regular school activities. By then he had attended a couple of NFB programs such as the Junior Science Academy. I told him to learn what he could from his O&M instructor and assured him that we would get the rest from the NFB. I sent him to a middle-school program at the Colorado Center for the Blind (CCB). In three weeks he learned more O&M than he learned in two years with our instructor.

During the next year, Roman went to his weekly O&M sessions, but he refused to go on most of the monthly trips. I figured he was still getting services, because I refused to give them up in the IEP.

When Roman was in seventh grade, I started asking for more technology again. We received funds to get him his own notetaker to learn on at home. By now I was truly indoctrinated into the NFB way of thinking—or so I thought. Oddly enough, though, I still had never asked for help, not even with our IEP.

That year Roman attended the LAW program, even though he had no interest in law. He came back outraged and determined that he would help advocate for others, and so did I!

I now knew that Roman desperately needed technology. We got a computer at home and found help to get him his own laptop and JAWS program before his freshman year of high school. I figured we would stumble through it on our own. But by now he was so far behind in the tech wave that it was hopeless. However, we were both more willing to be vocal about what we wanted. First on our list was to get technology training--and no beating around the bush!

When Roman came home from his first midterm exams with a failing grade in computer applications, I was almost happy. I felt like I had some real ammunition to fight with them. Fight with them? Wow, that was new for me!

I also decided that I was going to do this right. I asked Garrick Scott, who had become my friend through my association with NFB, to help me at the IEP meeting. The school was shocked that Roman was failing. They figured computers would be his easiest class. Why they thought so I am not sure. They knew computers was a required class for all freshmen, but they never gave him the training. They did not have JAWS on any of the computers at school, and Roman just sat there in class. He couldn't see the screen to do anything he was supposed to do.

But I digress. I called for an emergency IEP meeting. I also emailed Dr. Denise Robinson from Your Tech Vision and asked how to go about getting her to teach Roman remotely. I wanted the best. Thanks to Carlton Walker I knew I couldn't ask for the best, but that's what I wanted, and I devised a way to get it.

Our school district said they had found someone to teach Roman computer technology. The instructor was in a town ninety minutes away, the same town where he did his monthly group O&M classes. I said I didn't want Roman to be pulled out of class anymore. I gave the director the information about Dr. Robinson, and he said he would call her that afternoon. I was elated, so went right home and told Dr. Robinson to expect his call.

Nothing. A week later the director still had not called her. I called him to ask if he had found anything. He said he found a couple of teachers Roman could go to, possibly once a month or so.

I said, “No! He is so far behind now, he needs intensive work. Please call Dr. Robinson and talk with her. Just talk."

Still nothing. Needless to say, it took several pushes just to get him to talk to Dr. Robinson. But then it was as if a light went on in his head. I don't know what she told him. At that point Roman was still doing all of his homework in hardcopy Braille. The TVI transcribed his work into print. Then his homework was given to the classroom teacher, who corrected the paper and gave it back to the TVI to go over with Roman. The system must have sounded antiquated, even to the school district. Advice from a professional was just the thing.

Somehow the district found it in their budget to let Roman work with Dr. Robinson two to three times per week. The idea was to get him working independently and dealing with his classroom teachers directly.

Mission accomplished? Not quite. I must have been giddy with the fact that now they were really listening to me. At the IEP meeting to put working with Dr. Robinson into effect, I had my advocate ready. I told the district Roman was not being pulled out for O&M anymore. He was already too far behind, he didn't want to go, and didn't feel that he was learning anything. I told them I was unhappy with the redundancy of the training. Roman said he had been learning to cross streets for the past four years. I told them how much he had learned at the Colorado Center for the Blind, and that he didn't feel he was gaining anything from his O&M classes anymore. Oddly enough, the school listened and agreed.

By now I was almost drunk on my power. Keep in mind that I was still quiet and respectful. I told them to find a new instructor, but repeated that Roman was not to be pulled out of class. They would have to find someone who could work with him before school, after school, or even on the weekends. I knew that in our rural location they wouldn't find anyone to fit the bill, but I just let them work on it.

Then my wonderful advocate said he knew a place that could provide all the O&M instruction Roman needed, working with him in the summer. Roman already qualified for ESY (Extended School Year). We just had to think outside the box. Instruction didn't have to be local. I said Roman learned so much when he went to Colorado. I left them with the fact that I would get them information on these training centers.

I don't know if I really expected them to do what I wanted, but I wasn't to be stopped. I called some people I knew. Thank goodness for my staying connected with the NFB, right? Now I actually KNEW people who could make things happen.

Roman's IEP still said that he was to get one hour per week of O&M instruction, but I asked them to add that they were looking into some sort of summer training program.

A few weeks later I left several brochures for the director from a few NFB centers. Nothing happened. I decided to do the same thing I did with the technology. I was going to set everything up myself so they couldn't say no.

I contacted Eric Guillory, whom I had met at the last NFB convention. He runs the youth programs at the Louisiana Center for the Blind. I don't think he remembered me, but I didn't care. Roman was going to go to that program one way or another! I told Eric what I was trying to do with the school and explained that I was trying to get the director to contact him. Of course the director never did.

I knew that Roman was not getting services, so I figured I had a little more leverage if the school was behind. I also knew that Roman was getting more mobility from my involvement in the NFB. I let it slide until closer to the end of the year, when the school would be further behind in getting services. I went ahead and filled out applications for Roman to attend the program, as I knew the school would wait and miss the deadline. More conversations ensued with Mr. Guillory, but still the school did not call.

I called another meeting with the school about the issue. Now I was pretty sure I knew that the school would try to find a local instructor or program. However, due to my involvement in the NFB, I was determined that Roman would go to one of the three NFB centers. I was stubborn, and now I felt confident that I could pull it off. After all, I was one of those radical NFB people now!

At the meeting I once again had Mr. Scott as an advocate. I am sure the school was getting tired of me asking to make sure we had a phone for my advocate, but I didn't care anymore. I would be polite, but this was about my child's future. Believe me, I was going to get what I wanted!

At the meeting, just as I suspected, the director brought up the two local programs. I didn't rant or rave, but calmly looked him in the eye and asked him if he had seen any kids come out of those programs. Of course he said no. I told him I had; I had also seen kids who had gone to the NFB programs. I informed him that Roman could already do everything that those local programs offered. He wouldn't learn anything new, so if that was what they were proposing, it was a waste of time. Why send Roman to learn things that he already knew? He was a student, and students need to learn. I asked the director to call and talk with Mr. Guillory. Mr. Scott seconded the idea, pointing out that he would gain more than just O&M but Braille, technology, and daily living skills as well. The director sighed and said he would call that afternoon.

Again, I rushed home to inform Mr. Guillory that a call would be coming at last. I told him things were starting to look positive--a good thing, as the year was almost over. Yet again no call came. I called the director and stated that there were very few slots left for the program. I said I had applied for Roman so that at least the process was underway. The director told me how much the program cost. Now, we all know that schools can't base services on cost, but we also know that they do.

The strategy I finally chose isn't one that I recommend for everyone, but I was confident in my son's ability and our commitment to stay connected to the NFB. I told the director that I knew the Louisiana Center was expensive, but that the program was so extensive that one summer at the high school level was more than comparable to four years of O&M during high school. Guess what! The director called Eric Guillory. Guess what! Roman is with the LCB program right now. Guess what! I feel the power that they say we all have. Guess what else! I had it all along, I just didn't know how to let it out.

Want to know my secret on letting it out? Getting help, feeling confident in my power, and staying connected to the NFB. Without the NFB I wouldn't have gotten help, and I wouldn't have taken my journey to power!!

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