Future Reflections Winter/Spring 2005
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We Share This With?
Parent Support Groups Fill A Void
Editor's Note: Several years ago, Donna Labarre, mother of a successful blind attorney, gave a speech about the benefits of a parent's organization–and why she wishes one had been around for her when her blind son, Scott, was growing up. Today, of course, we have the National Organization of Parents of Blind Children (NOPBC) with formal parent divisions in over two-dozen states and informal parent networks throughout all regions. Our means of contact for support includes the Internet in addition to face-to-face meetings and the telephone. However, to gain the benefits of this support, families have to reach out for it, make time for it, and give back as well take. With so many things competing for our time and attention, families naturally have to ask: is it worth it? Here is what Donna Labarre has to say about her experiences in raising a blind son, the value of parent support groups, and, in particular, the value of the National Federation of the Blind:
Good Morning Everyone! When I was first asked if I would speak here today, my immediate impulse was to say "No way! Not me. I'm not the speaker in the Labarre family!" For those of you here who know my son Scott, you are very aware that he is never at a loss for words. (I still believe he was born with a microphone in his mouth.) But, when Judy Sanders informed me that the main topic was the forming of a parent support group, I decided to say yes. I think a parent support group will fulfill a very important void. When Judy called and asked me for a title, (I hadn't started my speech yet) she helped me with one. But, now that the speech is written, I would like to change my title to: Who Could We (as Parents) Share This With?
Scott Labarre chairs the annual meeting of the Blind Lawyers Division of the NFB.
The federal law to mainstream disabled students was passed in 1975 [now called the IDEA]. Our son Scott went totally blind, at age ten, in 1978. This law meant to our family that we were eligible for many programs that helped Scott stay in a normal classroom system as he adapted to his blindness and throughout his whole education process. These services included teachers of the visually impaired, mobility teachers, physical education teachers, and an evaluation plan to monitor the progress of the student. (It boggles my mind to think of what a blind student had to go through before that law was passed.)
Right after Scott became blind, something became apparent to my husband and me. We had professional people, such as counselors and teachers, that could answer and help find solutions to questions regarding Scott's educational needs, but where and who could we turn to when we had questions regarding personal and social needs? You can imagine our fears about what kind of future our son would have. Our family never knew any blind people before this happened to us. Who could we (as parents) share this with?
As many of you know, through ignorance and lack of information, society can be cruel. Scott was the first disabled student to be mainstreamed at his school. He was sighted during his first four grades, so it was a hard adjustment for everyone. After he became blind, one of Scott's teachers started assigning a fellow student to take him out at recess. Parents called me at home stating that they didn't feel that their child should have to do this because it interfered with their child's life. Some of the students became very jealous from all the attention that Scott was getting. He had his own special teacher and equipment. In a way I could understand their concerns, but I really felt hurt and isolated. Who could we (as parents) share this with?
The first summer after Scott went blind, we were told that it might be a good idea to enroll him at the Faribault School for the Blind for the summer program. The rational was that the summer class would help him keep his Braille lessons up, give him a chance to learn new skills, and give him experience being around other blind kids. We did not know that much about the school or any of the blind students, but we decided to send him anyway. Many of the students went to the school year-round, most were blind from birth, and all of them were pretty well-adapted to their blindness. On the other hand, Scott was newly blinded, had very little training in blindness skills of any kind, and he didn't know any of the other students. He ended up feeling alone and isolated from his fellow students at the school. All in all, that summer wasn't quite the experience we all had hoped for. Who could we (as parents) share this with?
For many years our family and five other families would go to a resort on a lake for one week in the summer. We all had a wonderful time and the children had many things to do. After Scott went blind, things completely changed. Scott was now "different" from the others, and was left alone most of the time. He couldn't play the jukebox, play pool, or do the fun things with them any more. He just couldn't keep up with them. These were friends that knew us so well, but they didn't understand. Who could we (as parents) share this with?
Finally, through his teacher of the visually impaired, Scott was able to meet other blind kids. The teacher, under law, could not give a list of names and numbers out, but could introduce Scott to other blind students. Through this method, once in a while, I was able to talk to a parent of a blind child. When I did, I had a lot of questions and got some very good tips and some support. The only problem was that this didn't happen very often.
Thankfully, there were different opportunities of which Scott was able to take advantage. He ordered a lot of talking books from the Faribault Library. That was a wonderful service. At first, this service mainly served for passing the time as he adjusted. But after awhile, Scott really began to enjoy reading. This has turned out to be a wonderful asset to him.
Through Courage Center, Scott was introduced to the world of ham radio. They sent volunteers to the house and trained him until he received his license. Scott met many blind and sighted people interested in ham radio, and he attended many different camps at Camp Courage.
When Scott was in high school he went through a summer work experience program that was very helpful in preparing him for college. He not only received training on how to hire readers, but other skills necessary for being away from home. The greatest opportunity of all, however, was when he became acquainted with the National Federation of the Blind (NFB).
Academically, Scott did very well in high school. During his senior year he applied to and was accepted at St. John's University in Collegeville. He also applied for different college scholarships, and one was from the NFB. The NFB scholarship procedure is very unique. If an applicant is selected to receive a scholarship, the NFB pays for the applicant to attend the NFB annual convention held during the summer. At the convention, the competition process continues over several days of interviews and screening. There are many awards of different value. If I remember correctly, the scholarship amounts that year ranged from $1,800 to the top award of $10,000.
Scott's application was accepted, and in July we took him to the airport to fly to Kansas City where the convention was being held. As we began to say goodbye and wish him well, his words to us were "Don't be too surprised, but I'm going to win the biggest scholarship." He was very optimistic! It was just a coincidence, but the final decision was announced at the banquet, which happened to be held on Scott's birthday. We received a phone call that evening and Scott informed us he didn't win the big one but he did win the second biggest one, a $4,000 scholarship. The money was greatly appreciated for his first year at college.
But in reality, it wasn't the monetary prize that Scott received that summer from the NFB that became so beneficial to his life. He was so impressed with what he saw and learned at the convention that he decided to join the organization immediately. The many different blind people he met became positive role models for him. He started believing in himself, and the NFB gave him a whole new outlook on his blindness. Then he got active in the NFB. First, he became a member of the Minnesota Chapter of the NFB Student Division, then became the president of the Minnesota Chapter of the NFB Student Division, and then became the president of the National Federation of the Blind Student Division. [Today, he is the president of the National Association of Blind Lawyers, a division of the NFB.]
Scott hasn't missed the NFB's national convention since he received the scholarship that summer. (The convention always happens to fall around his birthday every year; this has saved us a lot of birthday gifts.)
Scott graduated "magna cum laude" from St. John's University and went on to attend law school at the University of Minnesota, where he made the dean's list. He is currently employed [in his own law practice, is married, and has two beautiful children.] You can imagine how very proud we are of him. He has come a long way from the time that he went blind at age ten.
We are very fortunate to live in a country where programs are available that help prepare our children to accomplish their goals and achieve the future they desire. I realize that many people and organizations (especially the National Federation of the Blind) have paved the way and have worked very hard for these laws, services, and programs; and I am very thankful for that.
But, as you can see from the experiences I have mentioned, there was a void for us as our son adapted to his blindness. Not the void of educational programs or services, but the void of support from other parents. I have since discovered that a lot of parents of adult blind children were as anxious as I was to talk about their experiences when their children were growing up. How nice it is to be able to share with other parents, in a large or small way, the things that can be so helpful in everyday life.
That's why I think, even though my son is grown, that it is essential to support the NFB in getting parent support groups started. A parent support group would have been a wonderful program for my husband and me when our son went blind, and would have answered the question, Who could we (as parents) share this with? Thank you.
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