Editor’s Note: Barbara Matthews, as she mentions in her article, became acquainted with the NFB and the NFB philosophy when she attended an NFB National Convention about two years ago. She is a woman of intelligence, good sense, and tenacity. All of which means she has considerable capacity to put what she learns into practice. I am delighted that she took the time to share her experiences with our readers. Her story is timely, and her suggestions eminently worthwhile.
On September 8, 1999, my daughter, Kyra Sweeney, started kindergarten at our neighborhood school in a regular classroom in a district where she is the only totally blind student. On June 23, 2000, the school year finished. I decided to write about her experience so that I can perhaps help other parents who face the difficult decision about the right educational placement for their child.
Kyra had a strong preschool background and so was probably as well suited for mainstreaming as any blind child. Mornings, she attended the wonderful Blind Children’s Center in Los Angeles, where she began learning Braille and cane use. Afternoons, she attended a regular private preschool in Santa Monica where we live. Her experience there varied enormously depending on the teachers and other children in her group.
We considered three alternatives for kindergarten. One was the school for the blind in neighboring Los Angeles, where most of her Blind Children’s Center friends would go. Another was a Los Angeles school with a VI resource room, located a long way from our home. Third was our neighborhood school around the corner from our home, where Kyra’s sister was finishing first grade.
We agonized over the decision, and we visited each program. We worried about the importance of having at least some blind friends, but we also worried about a long ride to school every day. We liked the idea of having our two girls in school together, but we also knew the importance of learning the special skills of blindness. Since I work full-time, I worried about whether I would have the extra time I knew it would take to create a program instead of sending her to an established one.
We made a tentative decision after meeting with the principal of our neighborhood school, who was very enthusiastic about Kyra and in fact, became an advocate for her needs, as well as my regular e-mail pal. I say “tentative” because at the time the district did not have a Braille teacher. The district staff talked about bringing in a retired teacher part-time and getting help from the County if they couldn’t hire anyone, but I was not convinced. Now I know for sure that a piecemeal system like that would not have worked for teaching Braille.
The IEP process was horrible. Other than the O&M teacher (who had worked with Kyra in her afternoon preschool program), no one on the staff had a clue about appropriate goals and objectives or who would provide the services, and their way of dealing with it was to try to brush it off. Fortunately, another NFB family had given us their daughter’s kindergarten goals and objectives at the convention the summer before, so we had a place to start. It took three painful meetings, tears, and a lot of persistence to get an IEP put together.
We decided to put Kyra with the teacher her sister had for kindergarten and first grade. (All the classes are K/1 combined.) This teacher was most familiar with Kyra and a literacy specialist. The principal reported that this teacher would welcome Kyra in her class. When we first met with her about it, I sensed that she wasn’t all that enthusiastic, but I figured I was overly sensitive. I didn’t say anything and went ahead with it.
We also decided to have a one-on-one aide for Kyra. My husband described what we wanted as a “stealth” aide. The idea was that she would help all the students, with particular focus on Kyra. We thought, “Who would turn down the opportunity for an additional aide in the classroom?”
We also decided to sign Kyra up for the on-campus after-school childcare program. Our older daughter enjoyed the program very much, and we knew it would give Kyra more opportunities to socialize with other children.
Two things happened right before school started that made us optimistic. First, a Braille teacher was hired, and she was great! Second, the principal arranged a training session for all teachers and staff where I talked about Kyra and blindness. I shared the NFB philosophy and the importance of high expectations. I told them how to greet Kyra and shared other tips, so that they would feel more comfortable around her. I told them to talk openly with the students in their classes about Kyra’s blindness. This made a huge difference from the beginning in the whole school’s attitude toward Kyra.
Then the first day of school came and the roller coaster ride began. The first day, things generally went fine. The aide didn’t seem to have much training, and she certainly had not been informed of the role we had in mind for her, but the O&M teacher assured us she had worked with this aide before and that it would work out. The classroom teacher didn’t always remember to say what she was writing on the board, but we figured she would get it soon enough.
On the fourth day, Kyra’s homework assignment was to talk about new friends she had made. That’s when she broke into tears and said she hadn’t made any friends and didn’t have anyone to talk to. The next morning, I put out a call for help to everyone I could think of, including the principal, the teacher, and the school psychologist. The principal responded immediately with personal attention and a stroke of genius. She simply introduced Kyra to a girl in another class who was looking for a friend and facilitated a friendship between them. She asked the aide and others to help the two girls find each other at recess and lunchtime. It didn’t turn out to be a lasting friendship, but it did break the ice for Kyra.
A week or so later the phone rang, and it was the mother of a little girl who wanted to invite Kyra over for a play-date! What a simple thing for most families, but we were thrilled. This broke the ice for me. I remembered the advice I had gotten from the mother of a blind friend of ours who had grown up to be a successful and charming young woman. The mother said, “You’ll have to work much harder to facilitate friendships. You’ll have to ask others more than they will ask you. But it’s worth it.” So while I learned quickly to limit invitations to those kids who showed an interest in Kyra, I started using weekends as an opportunity to invite other kids for play-dates at our house. I had to plan and monitor the activities more than with my sighted daughter, but it was worth it. After a while, Kyra had a “best friend” named Lily who lived in the neighborhood.
We also signed Kyra up for all the popular activities in the community—soccer, softball, swimming lessons, rock climbing, musical theater. Some worked out better than others. (Fortunately for me, since I was the one who had to run with her, she decided not to continue soccer.) What was important, in addition to the fun she was having, was that other kids and their parents got used to the idea that blind kids do the same things as other kids.
But most of the time when I visited the school, I came away upset. The Braille teacher was excellent but frustrated because the classroom teacher was not providing any materials for Brailling. It turned out that advance planning was not this teacher’s strength. The Braille and O&M teachers were also trying to figure out the best time to work with Kyra, but it was difficult to get a fixed schedule. At the principal’s suggestion, we tried having weekly meetings among the staff providing services to Kyra, but they were poorly attended.
I learned that the other kindergartners were having computer time, but no effort had been made to install software for Kyra. I requested a technology assessment, which was done very superficially. It was January before Write Out Loud was installed and the Braille teacher started working with her on keyboard skills.
By December, there were still no Braille books in the school library or the public library where the class went once a month, even though we had provided information on the Kenneth Jernigan Library and other sources of Braille books before school even started. When I asked about it, the aide told me the books were “being catalogued.” I suggested she just take some books from the classroom along when they went to either library, but even this didn’t seem to happen.
Frequently I would see the aide accompanying Kyra when a classmate would have been more appropriate. The aide did not facilitate socialization, but rather seemed to interfere with it. Also, Kyra did not seem to develop a bond with the classroom teacher the way her sister did, and I wondered how much this was attributable to the aide acting as an intermediary rather than facilitator.
But Kyra’s reading was progressing and things were going okay, so we went along until two things happened in May, and I blew up. First, after a field trip, Kyra said the person she sat with on the bus was her aide. This demonstrated a complete lack of understanding on the part of the aide about what her job should be (and the teacher should have known better as well). Then, after an IEP meeting where we struggled with the issue of how to minimize pull-out time yet get Kyra the services she needed, I went to see Kyra and found her coming out of the classroom with her aide. I said, “Where are you going?” The aide said, “We’re going to do some Xeroxing.” I couldn’t believe this was happening. The Braille teacher was with me, and she gently suggested that Kyra should go back to the classroom. She later took the aide aside to talk to her about it.
I went straight to my computer and e-mailed the principal, the teacher, the O&M teacher, and the school psychologist. I said that even though the end of the school year was approaching, we shouldn’t wait to make changes. No one questioned my reaction. I had a long phone conversation with the O&M teacher, who made a couple of simple yet significant suggestions. Most importantly, she said the aide should not sit at Kyra’s desk, as she had been doing. Why hadn’t I thought of that before? She also said she was developing a daily checklist for the aide and asked for my suggestions.
It took a few more conversations, but there finally came a day in June when I took Kyra to school and came away happy. The aide had a desk of her own. When Kyra arrived, she came over and said hello then went back to what she was doing, leaving Kyra to accomplish her now familiar morning routine on her own. When she needed help finding something, a boy in the class helped her. She talked with others about the right answer to the daily survey question. A few days later, she came home very excited to report that the library had Braille books! Finally, progress had been made.
But the agonizing decisions continue to arise. After much thought and consultation with the principal and the Braille teacher, we decided to put Kyra in a different teacher’s class for first grade. This teacher-student taught in Kyra’s class this spring, and Kyra loved her. The principal reported, after approaching her with the idea, that this new teacher would be honored to have Kyra in her class. When I e-mailed the teacher she responded that she would love to have Kyra and assured me that she is very well- organized. She said she wouldn’t want Kyra to miss anything because she hadn’t gotten the materials Brailled. But we still worry about taking Kyra away from the friends in her old class and putting her in a new environment.
We also decided not to request a different aide. While the one we have isn’t ideal, she has shown a willingness to listen and learn, and she has a good heart. Also, few aides in the district are highly trained, and we might get someone worse. Instead, we provided in the new IEP for the aide’s time with Kyra to be reduced to three days a week by the end of first grade. Our goal, of course, is to eliminate the need for an aide entirely.
Bottom line: I think we did the right thing in mainstreaming Kyra. I think she is much more of a regular kid than if she were to go to a special school. I love the fact that we run into her friends at the park and the market, and she loves it, too. And she certainly is changing what it means to be blind in the minds of her classmates and their families. No one at school tells us the philosophy of the NFB is “radical.” It is simply accepted.
But making it work takes more time than I ever could have imagined. We were very lucky to get a Braille teacher who pushes Kyra to her limits and to have a principal who loves a challenge. Without these key people, the balance might tip the other way.
Every child and every situation is unique. But for anyone facing the critical educational placement decision, here is what I can offer from my vast experience of one year:
1. Look for enthusiasm about your child. It counts more than experience. This applies to teachers, principals, after-school programs, etc. If it’s missing, consider alternatives.
2. In a teacher, look for organization and advance planning. Without it, true inclusion is impossible for a student who needs adapted materials.
3. Remember when you knew nothing about blindness? That’s where most people are in their thinking. So, provide training for everyone you can, especially the teacher and the aide. For the most part, your efforts will be appreciated.
4. Look for avid e-mail users, and use it yourself. I don’t know how we could have done without it. It lets you communicate with several people at once, and it eliminates telephone tag. It lets people respond when it’s convenient, rather than when it’s an interruption.
5. Socialize. Be part of the school community. Invite people over. Show them that you expect your child to be included in social activities, and they will respond accordingly.
6. Trust your instincts. If you have a feeling it’s not right, it probably isn’t.
National Federation of the
2001 National Convention
Sunday, July 1, 2001 - Saturday, July 7, 2001
1201 Market Street * Philadelphia, Pennsylvania
$55 for singles; $65 for doubles, triples,
and quads.;14% tax.
For reservations call (215) 625-2900
NOTE: The annual day-long seminar for parents of blind children, sponsored by the National Organization of Parents of Blind Children (NOPBC), will be conducted on Sunday, July 1. Other NOPBC-sponsored events for parents, teachers, and children will also be scheduled throughout the week.