The Story of Pumpkinhead-Part 1
Readers, I am dedicating the next three columns to my special needs’ daughter Kelsey. I’d like to share the story of “Pumpkinhead”. Perhaps Kelsey’s experience will help others. The story begins in 1975 with Public Law 94-142. The law passed and gave children like our daughter, Kelsey, the right to a public education. Now, it’s known as IDEA, the Individuals with Disabilities Education Act. Prior to the law, special needs children had no educational rights and were left at home or placed in institutionalized care.
I have often wondered how those trailblazing parents found the time and the energy to affect a change. Over the years, I have gained a passionate appreciation for their work. Fortunately, they were successful and our daughter benefits every day from their dedication. Kelsey started public school in California at 4 months old, the day she was released from the hospital. Now, I can see why that was so important. She was delayed at birth. It was obvious to me. California was ahead of the law, which enabled Kelsey to get help fast. We’ve moved a few times since then and with each move our new state and school district provided a specialized education for our daughter. They were good Kelsey and were quick to address her needs and implement a plan. Kelsey has several needs. She has cerebral palsy, mental impairment, vision, and heart problems. Kelsey is not easy to assess. But, together with our school district, we worked to get past her inabilities, to find and develop her strengths. Sometimes, there are differences in school programs. It’s kind of like taking a child with a heart condition to a doctor that specializes in autism or seizure disorder. Schools have specialties, too and they do their best to provide what’s necessary. But sometimes, they just can’t meet the child’s needs. Now for the specifics. While living in one particular school district, our daughter’s medical needs began to increase. Her health issues came at the same time that she was to move from middle school to high school. We were living in a rural school district that struggled with high school special education staff and support services. The combination of Kelsey’s health issues and lack of school services would not be beneficial to our daughter. In fact, we were fearful of losing ground. So you can get some perspective, let me explain. Kelsey was 15 years old at the time. She had many goals in her education plan including learning the alphabet and receiving physical therapy to teach her to walk. Part of the day, she was mainstreamed into the regular education classroom. We had no choice but to move her to the high school and for two years we watched her lose valuable achievements. During the same time, we explored other options for her. We found a program not too far from our home that serviced multiply disabled children with vision impairment or blindness. Kelsey was seriously visually impaired, plus deep inside, I felt Kelsey’s vision was much worse than doctors could identify. It was a mom thing. There were little things that she did or didn’t do at home. I can’t describe it as intuition. It was more of a feeling that her needs were worse than doctors’ were capable of testing. Considering all the factors, we felt it time to request a change and place Kelsey in a school that serviced those who were visually impaired. We found a school for the blind with a phenomenal program and resources. The cost was neutral for our home district. Kelsey’s state money would simply travel with her to the school for the blind. Kelsey was accepted for admittance and had an extensive evaluation. The blind school program was incredible and could meet our daughter’s needs. It was a dream program. Through their evaluation, the blind school felt Kelsey would be a good candidate for their program. Our home district agreed and the meeting was held to place Kelsey outside the district into this new school. Every member of our family knew that this move was right for Kelsey. The placement meeting was held to place our daughter into the blind school. But the placement didn’t happen the way we had anticipated. Our home district wanted our daughter back at the high school and the school for the blind agreed. We were shocked. We asked for a hearing. As a result, Kelsey remained at the school for the blind in a “Stay-Put”, which meant she would continue to stay in the evaluation program until our hearing was held. She would be ‘one on one’ with a highly qualified teacher for a lengthy time. Can you imagine? We were fearful of what the hearing would do to our family, particularly our other school age children. It was a small town and many in the district knew what was happening. But we walked with faith and had the security of knowing that what we were doing was right. And something unusual happened while Kelsey was in the “Stay Put”. We call it a miracle. While she was ‘one on one” with her teacher, we learned so much about our daughter, her feelings, and her potential. Until next week . . . the miracle of “Pumpkinhead”.

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