My oldest daughter is nothing short of amazing.
When she began learning to read in her preprimary classroom at the age of five, she tested at 2.5 years in math and reading readiness. She learned to write some of her letters. They told me they were going to place her in regular kindergarten. I knew she wasn’t ready for regular kindergarten, so I tried to get her into the young fives classroom. I was told that she was too old. Then I requested that she be placed in a special ed kindergarten. I was told that there were no special ed kindergarten classrooms; they had closed the last one in our region. So she was enrolled in a regular education kindergarten class.
When kindergarten began, her teacher sent a note home to all the parents instructing them to buy shoes that tied for their kids instead of Velcro shoes, because in HER class, they would all learn to tie their shoes. After two weeks I got a telephone call from that teacher requesting that I buy Velcro shoes for my daughter. (She learned to tie her shoes when she was nine). My daughter did learn to write most of her letters by the end of that school year.
But at the end of the school year, her teacher said that she was probably mentally impaired. She admitted that a boy from our district had been placed in a special education kindergarten and that boy had not needed it. She said that my daughter needed it, but had not been placed there. I realized that in the face of direct questioning and requests, I had been lied to. There have been times in my life that I have been speechless and it was a blessing for all involved. This was one of those times, because if I had been able to speak, I would have said things that I would have regretted.
The next year, my daughter received special education services in first grade and she made progress. The year after that, she was placed in regular second grade. After three weeks, her team teachers called me and said that she needed to be in special ed. They were reading out loud, and when it was her turn, she would cry. The school psychologist and the speech therapist tested her more intensely. It turned out that she had multiple learning disabilities – short term and long term memory deficits, auditory processing deficits, fine and gross motor deficits, and speech and language deficits. Her reading level tested at 1.4 grade level.
I kept telling them that she needed special education, but they kept trying to put her back into regular education. I am not sure if it was because mainstreaming was the education fashion back then or if it was to save money. Maybe both. Perhaps because she was a quiet girl who didn’t cause much trouble aside from crying, it was easy to ignore her.
Until the end of fourth grade, it was a see-saw placement for her despite my efforts at advocacy. I kept saying, she isn’t learning to read. It takes her half a year to learn her teacher’s name and she doesn’t know any of her classmates’ names, even though in our small district she had the same kids in her class every year. Her reading level remained stubbornly at the 1.4 grade level. I felt like I was talking to a wall.
In fourth grade, she and her brother and sister were diagnosed with high functioning autism by a child psychiatrist. There was resistance to this diagnosis by her special education team, but we stood strong in our support of the label. Sometimes labels get services that vague descriptions fail to provide. At about this time I began to attend conferences and workshops regarding special education. One of the workshop leaders gave us a step by step process to advocate for our kids, and information regarding how to call in advocates for meetings with administrators and directors of special education.
At the end of fourth grade, I was told that despite their best efforts, my daughter’s reading level was still at the 1.4 level. Her speech and language remained below the 1st percentile. She still had not learned to tie her shoes, and her pencil grip was very impaired in spite of their continued efforts to change it to something resembling normal. Her teacher said that she could not learn to read by phonics and she could not learn to read by sight words (the two main methods of teaching reading at that time). I asked her teacher, “How will she learn to read, then?” The teacher said, “I don’t know.”
I was then told that the next year she was going to be placed in a room by herself with one teacher’s aide with another girl who was emotionally impaired. My daughter would be mainstreamed for art and gym. This was the last straw. First, a placement with an emotionally impaired girl who had made her business to make my daughter miserable was the absolute last place my daughter should be. Second, I felt that my daughter was not getting the services she deserved.
I decided to take action according to the steps I had learned in the workshop on advocacy. I scheduled a meeting with the director of special education. I dressed in a suit. I wrote a letter detailing how they had failed to meet the free and appropriate education standards for my daughter. They were breaking the law. I noted that in five years, her speech and language had not progressed beyond the 1st percentile. Her reading level had not budged beyond 1.4 in five years. She was an indiscriminate hugger; but she was unable to learn the names of most people around her. If she was abused in any way, she would not be able to report it. She was not safe in my opinion in her placement. In my letter, I calmly demanded a special aide to be with my daughter five days a week. I insisted that my daughter should have speech therapy three times a week. I also dropped the names of several local well-known advocates in the area and I promised that if I she did not get what she needed, that I would bring one of them in for a special meeting with the district administrators. I had developed some backbone.
A few days after the meeting, I was offered a placement for her in the regional autism classroom. I went on a tour of that classroom and met her potential teachers. In the fifth grade my daughter was bused to the regional autism program. It was wonderful. She met with a speech therapist once a week, but every day, these lessons were reinforced. They taught her to swim, to roller skate, and to close the bathroom stall door when she used the public bathroom. She learned activities of daily living that we had not been able to teach her. Her spelling was atrocious. Her reading level remained at the 1.4 level, but her strengths were finally encouraged. She was mainstreamed for math, not just art.
Instead of learning to read, the director of special education in that district suggested that she sign up for the Reading for the Blind program, because she had the ability to understand stories, but not the ability to read, yet. So every two weeks, we went to the Reading for the Blind Library and got books on tape.
In 7th and 8th grade, she began to build the foundation for reading. She began to build a word library of sight words. This was done through intense and daily reinforcement. By the end of 7th grade she had a word library that she could read by sight of 100 words. By the end of 8th grade she had a word library of over 300 words. These were not words like See spot run; these were words with meaning like Michigan, library, reading, cooking, teacher.
In the 9th grade, she began reading independently and this is how it happened. This was about the time that the Lord of Rings movies began to be released and we made it a family event to go and see them. She decided that she wanted to read the Lord of the Rings. Her younger brother, who by this time was reading at college level in the 7th grade, very rudely announced that he was not going to read the books to her. She said that she would read them herself. It took her two months of daily reading to read the first book. It took her a month to read the second book and another month to read the third book. We wondered how much she understood, but at the end of the second Lord of the Rings movie, she said to us, “They didn’t have the spider scene at the end.” That’s when we knew that she was understanding what she read.
After that she began to read voraciously. Every week or two, she went to the library and got a book or two out of the library. She began to read 40 books or more a year from the science fiction and fantasy section of the library. She soon ran out of books and had to use inter-library loans. Her spelling was still atrocious. She was still autistic. But by her determination and the effective foundation built by her teachers in the autism program, she had learned to read.
My oldest daughter is amazing.