By Kristine Thomas
Perspective has provided serenity to Silverton residents Kim and Jessica Perkins, helping them realize the battle they fought and lost for their daughter Zen was actually a victory. Their 10-year-old has Down Syndrome.
“We fought the fight and lost. But in the long run, we won because we have our family and we have our daughter who is happy and enjoying to learn again,” Kim said.
The Perkins and the Silver Falls School District had very different views of what was best for Zen last fall. Each side was given an opportunity to present its case when the Perkins filled a Request of Special Education Due Process hearing with the Oregon Department of Education.
The Perkins wanted Zen to continue at Community Roots School for the 2013-14 school year. The district said she should be placed halftime at CRS, and halftime at Robert Frost where she would be in a basic skills class.
“That might sound hunky-dory to some, but that means Zen is visiting two schools and she doesn’t belong to a community,” Jessica explained last fall, adding they had asked for full-time placement in a CRS classroom with a special education assistant.
“Last year, we felt compelled to pursue what we felt was our daughter’s moral, civil and legal right to a quality education in Silverton,” Jessica said. “We filed a due process complaint again the Silver Falls School District because we felt that SFSD had violated our daughter’s due process rights. Since having done so, my family has been made to feel like villains.”
Jessica said Zen’s sign language supports and accommodations were taken away once the trial started last fall, adding the district was highly motivated to deny her full-time access to Community Roots School.
“They exerted political pressure on CRS to keep in step on this process of denying our daughter placement there. CRS teachers and parents who supported our daughter initially backed off from doing so,” she said.
Jessica said despite the obstacles, she stood up for her daughter because she strongly believes children who are different should not be separated from their “typical” peers. It creates “an unnatural and derisive barrier and unbearable conditions, separating based on ability,” she said.
At the hearing, Kim and Jessica spent a week listening to the testimony of teachers, administrators, specialists, educational assistants and others from the district, who testified Zen would be best served the district’s individual educational plan. Then they presented why they believed Zen would thrive at Community Roots.
“We (asked) the judge not allow Zen to go to Basic Skills or Functional Skills classroom,” Jessica said. “That system was a negative form of isolation that fostered unhappiness, depression and fear in our daughter.”
In February, the judge upheld the district’s placement plan of half-days at CRS and Robert Frost. The Perkins decided to home school their daughter.
“After all was said and done, the picture the district painted so clearly was what we were searching for and what we thought we needed to do to be good parents was not good for Zen,” Jessica said.
Moving beyond labels
Last week, Jessica sat at the family’s picnic table while Zen and Kim played softball in the backyard. Now that things have settled down and they have had time to reflect, they wanted to share what they have learned.
“We hold no ill will toward the school district,” Kim said, “but a part of me feels responsible to speak out about our experience because that is how change is made. We believe the system is segregated and unhealthy for children with special needs.”
Although the hearing was extremely painful, they said they are grateful for it because they have closure. They believe the district’s fight was not so much about what was best for Zen. Instead, they see it as a battle to keep a system in place. The Perkins believe the district was concerned about the financial impact of having special needs students educated outside the program.
“We tried to change the system and we lost. We realized we couldn’t go home and mope,” Kim said. “We feel the real responsibility on how to educate Zen is on us. What is most important to us is our family.”
Jessica, who received her law degree from Lewis and Clark College and works at the Oregon Department of Fish and Wildlife, cannot count the hours she spent researching, writing and preparing her daughter’s case. A graduate of the University of Washington with a degree in fisheries and wildlife, Kim manages his family’s property and is a stay-at-home dad.
When Zen was born, Jessica said it was easy to accept the professional opinions of what was best for Zen. They believed that’s what it meant to be good parents.
“We believed by getting her services and advocating for her to be included in public schools with the special needs support it would make her like every other kid,” Jessica said. Looking back, she realizes what she was really fighting for was for “Zen to be Zen.”
“Zen has been playing the role expected of her,” Jessica said. “We have spent all this time trying to get Zen to fit into a mold in order for her to go to school. All of Zen’s life, people have been there to take care of Zen and they have really good intentions. I think we have allowed people to see Zen as the girl with Down Syndrome. We are finally getting to see Zen as Zen and really getting to know her for who she is, instead of who people want her to be.”
Both Kim and Jessica said it was extremely painful to hear educators from a district with the motto “Every child is a promise” find fault after fault with their daughter.
Jessica said it became clear that “the services we were fighting for were not anything special for Zen.”
“The special education is a canned curriculum the student must follow A, B, C and D,” Jessica said. “Why are we fighting for Zen to stay in a system that thinks poorly of her?”
Jessica said because the district was trying to gather information to prove Zen didn’t belong at CRS full-time, staff documented everything she did wrong, including the day when walking back to school from the library, Zen wanted to sit down and rest.
“Everything the school district did was to prove how different Zen was and prove she needed to be in special education class,” Jessica said.
After a long day in trial, Kim said he came home and spent time with Zen, who took him on a tour of the kitchen. She opened the refrigerator and described how the food was organized.
“Then, she did the same thing with the pots and pans, the condiments,” Kim said. “Just a few hours before I listened to people testify she didn’t know her categories or her nouns. They testified about all the things Zen couldn’t do and that’s why she needed to be placed half time in special education. In that short time, she showed me all she (could) do and made me realize that I had the same problem as the school district. I never stopped to listen to Zen and look at Zen as Zen, instead I saw her as my daughter with Down Syndrome.”
Refocusing on Zen and the person she is
Now the Perkins’ focus is on listening and learning from Zen. They have decided to stop rushing from one appointment to the next. Kim enjoys spending time with his daughter and teaching her. Their days are busy with lessons on reading, language, math, writing and geography. He teaches her life skills such as how to grocery shop, garden and cook. He is working to restore her confidence by playing volleyball, basketball and softball.
Since settling into the routine of being home schooled, Zen has become more articulate and outspoken, her parents said, and more importantly, she is happy.
“We are really getting to know her without all the noise of the therapists and specialists and talk of her IQ and developmental level,” Jessica said. “All that stuff is very limiting. We are making learning fun again for Zen.”
Jessica said she has learned the attitudes about a person with a disability molds what other people believe is possible for the child. Rather than looking at the child for who she is, people looked at her label.
“I have had people tell me, ‘Poor Zen,’” Jessica said. “Zen has so much more to offer than being labeled by her disability. If we had kept Zen in the system, I think that’s all she would have been seen as – the kid with Down’s syndrome.”
“What I have learned is we were doing all these things so Zen could be like other kids . We thought if she could do certain things like other kids she could stay at Community Roots,” Jessica said. “We have since learned all that stuff stopped Zen from being Zen.”
