"So she is...Blind?"

I took Missy into the ophthalmologist with reassurances from her pediatrician that the worst we would find out was that she required surgery because she was cross-eyed . When Dr. Hoffman told us that her optic nerve had not developed properly I asked if she could see color.  He responded that we were lucky if she saw black and white. “So she is ...blind” I said. “Yes and we will do some follow up testing to she how much functional vision she has.” He said to schedule a MRI scan on our way out. He then spoke into his recorder I heard him say something about a copy of the letter being sent to the parent infant program that could provide services. I left the doctors office feeling quite stunned.

The many images of blindness I had learned in school and on TV were racing through my mind. I had so many questions. The next day I contacted the parent infant program, they had not received the information from the doctor but began their assessments at my request. A vision consultant was to visit our home once a week to help Missy learn the skills that would help her to learn Braille, they called it pre-Braille. Missy was not the only one who benefited from this relationship. It was great for me to have someone educated with Missy's diagnosis to answer my questions.

Activities consisted of scooping rice in a cup and pouring it out, and many tactile experiences that helped her to reach out to the world around her. Missy loved this and she kept up to average development in both fine and large motor skills. She was introduced to Braille; many of the objects in our home and magnets on the fridge were labeled in Braille. Pre-reading skills, I was instructed, are just as important to the blind child as the sighted. We purchased twin vision books and I would read to her as she felt the bumps on the page. While these activities were being introduced, Our early intervention specialist, would often ask about other aspects of our lives. I began to see that all areas of our life, financial, social, familial, and social were affected by this disability.

When Missy turned three, Parent Infant Program services stopped and we were introduced to  the blind preschool. We were taken on a tour of the classrooms. They started by showing us some children that were severely disabled; they were laying on mats on the floor listening to music. There were also other children who had disabilities in addition to blindness, such as being in wheelchairs, that were there. The teachers were sweet and the classes were small in size. The children were grouped according to academic ability and I asked how long Missy would go here-- “Missy is just blind and has no other disabilities so she should be able to attend public school Kindergarten.”

It was very hard for us to send Missy to the preschool. I often subbed since they was a high turnover of teacher assistants. I expected to see more Braille available to the children, but I started to notice almost all of the other students had some vision. A few of them could even lean in close to the page and see the picture they were coloring! Missy learned new songs, days of the week, and numbers. She also sat in circle time and learned to listen for the children to sit down in there chairs and head over independently to join them. This was all good, but I often asked about Braille. I was always told that this was pre Braille, playing in the ball pit also counted as pre Braille. I asked about pre reading and writing. “If we introduce Braille too soon, she might reject it and never touch it." I saw children who were tactile defensive, Missy was not. But these were professionals. I had a college degree but no formal training in Braille, so who was I to argue or insist?

Before every IEP I was given a new copy of our rights though I never felt like I could effectively answer questions like, “What goals do you think we should set? How much service do you think Missy needs?" I felt like I was expected to write "a program for teaching the blind to read and write Braille" at each meeting. The professionals were setting her goals to include things such as "Missy will hop five times on one foot" and "Missy will identify objects such as wash cloths a ball or a crayon with at least 50% accuracy by June". When she accomplished these things there was great celebration and I was told how smart she was and how much she was learning. But my gut instinct was that she was not learning to read and write and that made me worried. I asked about how to strengthen her hands when I was told she was too weak to use a brailler- "let her play piano, she will play for hours here on the keyboard". I felt very inadequate to label their current standard of  Educational expectation as lacking. I had the assertiveness to be ambitious and supportive, yet I lacked the ambition to undertake pleading for braille skills from the School for the Blind.  Instead, I decided to play assistant, with the desire to increase Braille use in the classroom. 


I Brailled alphabet border strips for the teacher; they were not used. I explained to the teacher that Missy enjoyed feeling the Braille on the furniture at home, so I asked if I could put labels on the play equipment in the class. Her permission came reluctantly, but I did my best. The other children picked the labels off and no one had any interest in replacing them. I was told she would be taught Braille later in kindergarten--- I thought she would be attending a regular class for kindergarten.  That's when I was told that the best place for Missy was a School for the Blind kindergarten class at a regular elementary school. We were so disappointed, we wondered if she would ever be able to walk up the street with her friends to the neighborhood school.


I wanted to see the school she would be attending. I headed up to the school alone, I walked in to the main office and was greeted by a friendly principal. "My daughter is to attend Kindergarten here," I said. “May I have a tour?” She began in the lunchroom eagerly telling of the many extra -curricular programs the children could take part in." And which Teacher does she have?" I replied with the name of the Utah School For the Blind kindergarten teacher. She literally took a step back and folded her arms. "You will have to speak to the teacher then not me. They use our classrooms, and the PTA has chosen to include them but they are in no way part of our school." I was told to head to the end of the hall and she walked away. I met with the teacher and she set up a time to do a kindergarten test. When I asked about the principal the teacher added that they all had to move over to the less desirable classes across the hall at her request.

Later that week I sat outside the classroom as Missy failed question after question, this was not the regular Kindergarten entry test other children take but it was an educational assessment of some sort. The teacher tried to sound positive. But it was obvious that Missy had not really been prepared for Kindergarten after two years at the School for the Blind. I asked why it was a full day program- I was told it was full day as a courtesy to parents and children that were being bussed for up to two hours to make it worth their while. I asked when they did their reading and writing lessons- I was told that she spaced them throughout the day to make time for nap time. I did not want Missy to endure another year in an all day self-contained classroom. It seemed to me that it would just be a continuation of a Playskool/daycare setting.

I went back and forth in my mind, what should I do? I asked the School for the Blind director about Missy attending within the school district. I was told that she could go if I could find a school that would accept her. I was amazed. I knew of other children in her preschool that left the school for the blind and were going to attend regular classrooms, some of them even had other learning disabilities in addition to vision problems. Why not Missy? I went up to our neighborhood school and talked to teachers. I explained that Missy was blind and that I wanted her to attend. I asked the teachers what they felt would be their biggest challenge both said that class size was a major issue. I left feeling like the director was right, they wouldn’t accept her, she would be a burden and she would never learn what she needed.

I decided to opt out of kindergarten and teach her the skills she was lacking myself. I found a Braille tutor and Missy went to her home for 30 min twice a week. The home where she was taught Braille was full of kids and pets and Missy was very distracted. She learned a little Braille but not enough. Missy also received her portion of IDEA, which allotted to a 30 min a week provided by an itinerant from the school district. Initial testing and educational assessments took forever and all determined that she was lacking so many pre-reading skills. It was also during this time that I began reaching out to private schools as an option. I heard so many reasons - from  "Our school is not being set up for disabled children"  to "Our school has high academic standards that are even too high for most regular children." I cried and cried.

Then I found one private program that accepted her and the teacher was excited…for all the wrong reasons. She thought it would be such a positive experience for the other children. But I still felt that this was my only hope for her education. I also found a braille teacher that worked for the school district and was willing to teach Braille and mobility for $40 an hour, three hours per week. I felt I had no other options. The School for the Blind and the district person both attended the IEP. They explained that placement in their opinion should be in the self-contained classroom at the school for the blind. I signed them away. 

As the school year continued the teachers views of blindness became more apparent with comments such as "you should have her in music lessons, that’s the realistic future for her". I knew Missy was bright-- she was memorizing spelling words and her thoughts and comments were so well thought out and interesting. I remember once she asked me about bubbles and if the clouds were purpley soft. She said that if she were Christopher Columbus she would sail as fast as she could to America and then go outside for recess. Missy was the top of her class in Spanish. They would say "she is so smart".  And yes, we were impressed too- but in my mind smart included reading and writing.

It turned out the Braille teacher was not as available as she thought--once, maybe twice, a week for 45 minutes was not going to be enough for her to learn to read. I enrolled in a learning to read Braille by sight course at the USB campus. A teacher there thought it might be a option for her to attend USB first grade class for only Braille and spend the rest of the day at private school. I asked the School for the Blind if this was possible and she said "Of course!". Why was this not offered at the first IEP?!  

The teacher set the goals for Missy. She will learn the first twelve letters of the Braille alphabet and numbers 1-9. Looking back I am appalled that this is all that she felt a first grader should be taught. Missy was the only one of five children that used exclusively Braille, I often came in to find her sitting at the end of the row of chairs with nothing in front of her as the other students looked at large print books or were writing letters. The closing IEP said Missy often tried to wander the halls and had severe behavior problems because she would always ask for water so their IEP goals were not accomplished and she knew only letters a and g. and no Braille numbers. Not even 1 and 7?

Shortly after this I found an invitation to a convention of the National Federation of the Blind. I had already missed the first day. The passion that arose in me to attend was heaven sent. I knew that if there was anyone that could tell me what to do for my daughter it was someone who had been through it first hand.  

Everyone was so happy to meet us. This was such a professional looking group of individuals. They were discussing a National convention and protecting the rights of the blind. They were also talking about their priority to help blind children receive their Braille textbooks at the same time as their peers. When I explained my situation, Ron Gardner listened patiently and with great concern for my daughter said, “You're not just entitled to Braille. Your daughter has the same right as every child in this state. The right learn to read and write.” He introduced me to Marla, my parent mentor. She showed me another path-- it was not without bumps but it made so much sense. Before the end of the school year I walked into my neighborhood school to the principals office. I confidently announced that my daughter would be attending and asked him if he had any questions.

Within the first month of school Missy could Braille the entire alphabet. She had an excellent Braille teacher. They worked on Braille wait- they worked on reading and writing- every day. She participated well in her class, the classroom teacher found that Missy could participate in ALL class activities with a few adjustments. She was expected to work hard and learn, so she did. Missy is still working hard. We now live in Idaho and Missy is in 7th grade. She rides the bus with her neighborhood pals and spends almost the entire day in class participating with her classmates, working on the same assignments (that have been Brailled for her)and reading the same spelling tests and becoming more independent each day. She has learned to use the regular computer keyboard and likes to search (for Edward Cullen) on Google with a talking screen software. She recently won the Braille reading contest state wide at the Sophomore level. 

So many times in Missy’s life I had been in tears, wishing that the help that arrived for Helen Keller's parents would arrive at my door. With the encouragement of the National Federation of the Blind, great new teachers helped dispel all of the misleadings I had in my mind about my daughters education. 

My feelings and passion that had been encouraged by Early Intervention Specialists had returned. I now had the opportunity to use advocacy to establish an effective IEP, and to encourage relationship success between the classroom and Braille teachers. To enable the world to make a little extra room for my daughter, so she could enjoy the same privilege to learn to read and write. To me there is no more worthy cause than freedom, too many parents like me are feeling like their educational desires for their children are out of reach.  

 Please do not consider that a blind child will miss the opportunities offered to others just because they can’t see what’s going on. 

As a parent advocate, I not only know the importance of my child learning to read I know how to make sure it happens. I am grateful for those who support me in this cause. I extend a hand of support to any parents who may be in need of one.