Future Reflections                                                                                      Summer/Fall, 2002

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by Barbara Matthews

Editor’s Note: Barbara Matthews is a newly elected member of the board of directors of the National Organization of Parents of Blind Children. She and her family live in southern California. The article to which she refers below, “Kyra’s Kindergarten Year,” was published in the volume 19, number 4, 2001, issue of Future Reflections.

Last year, I wrote about Kyra’s experience as a fully mainstreamed kindergartner and only blind child in our neighborhood public school. I left off wondering if we were doing the right thing in our planning for first grade in two ways — first, by changing teachers, when most kids stay with the same teacher for kindergarten and first grade; and second, by keeping the same one-on-one aide. The answer to the first question is a resounding yes; the second, a qualified no.

But before I describe the first grade year, it’s important to relate what we did for a summer program. I think most parents of blind children would agree that it’s ideal to have a balance between mainstreaming and special programs for blind children. The tough part is finding the right balance, which varies from child to child, and circumstance to circumstance. In our case, we decided to work towards that balance by what we termed “blindness immersion” for the summer.

First, Kyra attended a “class” (two students) taught by the Teacher of the Visually Impaired (TVI) specialist at the special education summer school. During this time, her reading skills really took off, so that by the beginning of first grade, she was reading at a second grade level. In addition, her dad took her to the National Federation of the Blind convention in Atlanta, which she loved. She also went to Camp Bloomfield, for Family Camp and Buddy Camp. This was a bit of a disappointment. We felt that camp should be a place for making friends. Unfortunately, the counselors were not trained or encouraged to facilitate friendships. I think the program reflected the kind of low expectations for our children that we find all too often.

When first grade started, we were pretty sure we had done the right thing by having Kyra change teachers. The new teacher, Ms. Gillam, was very enthusiastic about having Kyra in her class. She provided materials to the TVI specialist for Brailling at the beginning of the summer! She came to our house for dinner, and it was clear Kyra would be comfortable with her. But things never go as planned. We learned during the summer that Ms. Gillam was pregnant, due in December. We decided to stick with her. She planned to be back in February.

This really seemed like the right decision when we visited the classroom the day before school started. As I went around making Braille labels everywhere a print label appeared (“Reading Center,” “Art Center,” etc.), I discovered that Ms. Gillam was one of those people who naturally narrates what she is doing—whether anyone is listening or not. It’s perfect for a blind child.

Kyra makes a metal mask at an art activity sponsored by the NOPBC at the 2002 NFB Convention.

Kyra makes a metal mask at an art activity sponsored by the NOPBC at the 2002
NFB Convention.

She also welcomed my suggestions about setting up the classroom for Kyra, including the separate desk for the aide away from Kyra and putting a friend of Kyra’s next to her. The friend, Kourtney, is one of those great kids who is completely unconcerned with Kyra’s blindness. They had become friends in after-school care. Knowing they would be in the same class (I got the class list from the principal well in advance), I made sure they had a couple of play-dates over the summer.

I’ll never forget the day school started. Kyra walked into her classroom, and someone said, “Hey, look, Kyra’s in our class!” Several kids yelled, “Kyra!” The smile on her face was a sight to behold.

Every day, the teacher put a “morning message” on the board. And every day, there it was in Braille on her desk, so that she could read along. Then they had calendar time. She used an American Action Fund for Blind Children and Adults calendar. The discussion of days of the week wasn’t a challenge for her, but the time was well spent learning to read a Braille calendar.

Ms. Gillam soon reported to me that the other kids recognized Kyra as the smartest kid in the class. One day a child said that there must be a connection between Ms. Gillam’s brain and Kyra’s brain because Kyra always knew the answer. Some kids became convinced that Braille was easier to read than print because of Kyra’s reading skill. What this meant to me was that Kyra was comfortable and confident enough to actively participate, and that she continues to be “changing what it means to be blind” in the minds of other people. Imagine how different these children’s perception of blindness and blind people will be as they grow up free from the misconceptions many of us had. My older daughter recently commented on one of Kyra’s achievements, “Well, that’s because blind people are smarter than other people.” I had to correct her, but I had to admit to being a bit pleased that Kyra is creating that impression.

We were very lucky to have a TVI specialist who pushed Kyra to her limits. When Kyra learned ten new contractions, Sherri gave her ten more. When it was clear that Kyra was beyond the spelling and math in the class, Sherri added extra hard spelling words and added an extra digit to the math problems.

But of course there were challenges. One was Kyra’s aide. We discovered that she had Kyra sitting with her for lunch. We insisted on putting a stop to that, but it was fighting a losing battle. I don’t think she had any idea how to help Kyra join a group of friends, or how to ask someone to join her.

Then there was the “Brailler as a safety hazard” story. One day Kyra came home with her homework, and I noticed that she had managed to circle some answers. I asked her if she had worked with Sherri on it; she said no, she did it in after-school care, but she couldn’t do more because she didn’t have a Brailler there. I immediately went to work to get her a Brailler in the day care room. The principal and the TVI specialist tried to help. Then I got a response from the day care teacher—She wouldn’t allow a Brailler because of “safety issues.” This was actually written down! I happened to be attending a reception for school board members that afternoon and mentioned the problem. By the time I called the person in charge of the after school program the next day, she already knew why I was calling. The problem was semi-solved by having the aide carry the classroom Brailler back and forth every day. They never did get one for the day care room. Not surprisingly, we took both our daughters out of the program by February.

Technology is a perpetual struggle. The school finally put a PC with JAWS in the classroom, but without a cable to plug it in! My husband finally went out and bought one and plugged it in himself. It took weeks for the Braille embosser to be moved from the high school, where it wasn’t being used, to Kyra’s classroom. Once it was moved, again, there was no cable, as well as no paper. I located a local community organization that was willing to make a grant to the school district to purchase a PIAF tactile imaging device. I prepared all the paperwork, but the school district never submitted the grant application. As for the Braille ’n Speak, we purchased it ourselves. Then it took five months to schedule the training called for in the IEP for the TVI specialist and for us as parents.

When Ms. Gillam’s maternity leave started, Kyra had a strong foundation of confidence. Unfortunately, Ms. Gillam had complications with childbirth and, as a result, didn’t return until May. That meant the class had two different long-term substitutes. We spent time “training” both of them regarding Kyra and our approach to blindness. With the help and support of the principal, both substitutes worked out fine. After talking to other parents, I think Kyra may have suffered less than the other children because she had the TVI specialist continuing to push Kyra to her potential.

Kyra’s friendships changed during the course of the year. At first, she continued to join her best friend from last year for lunch and recess. But the friend was in second grade, and a different class. Kyra became better friends with the other girls in her own class, particularly the other “smart” girl, named Leticia (called “LA”). We had LA over to our house several times. Eventually, her mother got over her trepidation and invited Kyra over. They even went to the beach! Kyra became much more aware of times when friends would come over and be more interested in playing with her older sister, Kiko, and she didn’t like it. This wasn’t all bad, because it encouraged her to try to be more social. She still had a tendency to start playing by herself even with a friend there. It remains a challenge to facilitate activities that she can do with other kids—meaning that they don’t involve a lot of running around.

Kyra had her first sleepover. The situation was ideal. She went with her sister to the nearby home of a girl who has been best friends with Kiko since kindergarten—who I call my third daughter because she has spent so much time with us. It seemed very natural, and she had so much fun that she didn’t want to come home.

I started a Brownie troop with another mom. It became very popular with the girls at school, including those with the more advanced social skills and involved parents. Like most girls that age, Kyra loved the rituals and the sense of belonging. I loved the opportunity for her to see the social behavior of the other girls and for the other girls and parents to see her participating as a regular kid.

In May, it was IEP time again. The meeting went relatively well. Kyra attended most of it, and provided helpful input on issues such as the phase-out of the aide. We asked for and got the TVI specialist for an hour every day (including prep time). We  asked for and got a commitment for the district to provide a BrailleNote (although we haven’t seen it yet). With the support of the principal, we got a commitment for a different aide. We also reduced the aide’s hours from the full school day to three hours.

On the down side, we learned that the TVI specialist wouldn’t be available for summer school. The district staff suggested that Kyra attend (and we pay for) the regular education summer school sponsored by the PTA. We’d inquired about that program last year, and were less than impressed, so we insisted on our right to extended school year services. We felt the skills she needed work on could be effectively taught by the O&M instructor. The district knew better than to refuse to offer a program, but it wasn’t until two days before summer school started that we actually got confirmation that there would be a program for Kyra.

There was no obvious choice for a second grade teacher, so we agreed to the principal’s recommendation. It’s a job sharing arrangement between two teachers. According to the principal, this requires advance planning and organization, which is critical to getting materials prepared for Kyra. We’ll see.

Then, on June 3, we got the real blow. At a meeting for parents of children in special education, the Assistant Superintendent accidentally told me that our TVI specialist wouldn’t be coming back. I say accidentally, because he assumed I knew, but I had not been told by the teacher or otherwise. I left the meeting in tears. He followed me out and promised to use all his contacts to find a replacement.

Summer school was a far cry from the prior summer. According to the IEP, the areas Kyra was supposed to work on were orientation and mobility, computer skills, and daily living skills. They didn’t even get the computer moved into the classroom for a week or two (of the five-week program), and then the teacher couldn’t figure out how to use it. They ended up cooking. Kyra had fun, but making “ants on a log with roaches” wasn’t exactly what I had in mind. I have learned how much we depend on the TVI specialist to be the most effective advocate for the student.

Nonetheless, as I sit here today, three days before school starts, we don’t have a TVI specialist. Needless to say, it’s agonizing. Last week, I asked for the district’s plan to address Kyra’s needs in the absence of a TVI specialist. I got back a response saying, basically, “We don’t have one; can you provide leads on a TVI specialist?” So I prepared a six-part plan and sent it to the Assistant Superintendent. He promised a response by the end of the following day. That was six days ago; I still haven’t received anything. I really don’t want to even suggest a temporary transfer to the school for the blind in neighboring Los Angeles. I’m afraid it will take the pressure off, they’ll give up and they won’t even look for a TVI specialist. And I don’t want to take Kyra away from the school community that she has become such a part of.

To make matters worse, they haven’t even hired a new one-on-one aide. That isn’t attributable to a lack of candidates. It’s simply bureaucratic ineptitude. So she’ll start school with an unprepared, untrained substitute.

Last year, I concluded with six suggestions for anyone considering the educational placement decision. Now, with the ups and downs of two years, I continue to believe in them, so I’ll briefly repeat them:

   1. Look for enthusiasm about your child in teachers, administrators, and others.

   2. In a teacher, look for the qualities of organization and advance planning.

   3. Take it upon yourself to provide training, for everyone you can.

   4. Use e-mail to communicate with the numerous people who are involved in your child’s educational program.

   5. Socialize with your child in the school community.

   6. Trust your instincts.

I will continue the saga in “Kyra’s Second Grade Year.” I hope other parents can relate our experiences to their own circumstances and perhaps get new ideas that will work for their children, or at least be reminded that we are not alone with these challenges.

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