Parent advocates can build support for families

ORIGINALLY WRITTEN ALEEN RATZLAFF
Lorna Ostlund, while at the doctor’s office recently, met the mother of a child with special need while at the doctor’s office. The mother opened up and shared concerns she had about an upcoming team meeting for her child’s Individual Education Plan.


“I could tell she was shaky about the meeting,” said Ostlund, a special educator with the McPherson County Special Education Cooperative. “I just volunteered, ‘If you would have more questions or if you would like, I would be willing to come and sit at the meeting.”


The mother accepted her offer and Ostlund will attend the IEP meeting as the woman’s parent advocate.


Ostlund has volunteered as a parent advocate for the past three years. She sees the role as helping parents organize and focus on the issues involved in their child’s IEP which defuses a lot of the negative emotional that may interfere with the parents’ logical thinking.


“Sitting there as a parent advocate, I don’t do a whole lot of talking at the meeting,” she said. “But if the parents start to lose focus because the emotions are setting in, I may go back and say, ‘Now what is it that you really wanted?'”


As a parent advocate, Ostlund works with parents whose children attend schools outside McPherson County.


“When a parent asks me to help them, I try to look at how I’m going to give strength back to the parents if they’re feeling like they’re not strong,” Ostlund said.


Parents of children with learning disabilities and emotional disturbances can feel overwhelmed.


“Some of the parents may be going into the whole thing just weakened because this is the child they love, and they’re hearing about the weaknesses or faults or inadequacies of their child,” Ostlund said.


Some parents may be intimidated by the professionals who participate in the IEP meeting.


“Maybe (the parents) don’t have the education background of people that they’re going in to work with, so they feel at a loss,” she said.


Ostlund looks for ways to empower parents, who meet with her prior to the meeting.


She suggests parents bring a photograph of the child to set on the table during the IEP meeting as a reminder that the meeting is about a child, not documentation on paper.


“I ask the parents, ‘What do you want for your child?'” she said.


Ostlund said she and the parents brainstorm together, writing down ideas. Then she helps them sort through information about their child received from school officials.


“I try to do this without them telling me all the emotional things that might have happened between the school,” she said.


Her goal is to help parents pinpoint issues that concern them and identify actions or options they think are best for facilitating their child’s learning. From that list, she asks parents where they are willing to give concessions.


“If they’re adamant about certain issues, that’s when I jump in-partly because of my special education background-and say, ‘Let’s get documentation. Let’s get the people that you need (at the meeting) or letters from those people,'” Ostlund said.


“That starts giving them strength because they’re organizing and not dealing so much right now with all their bad feelings.”


At the annual IEP meeting, parent advocates join a team comprised of those involved in addressing the special needs of the child and determine what should be included in the IEP.


“Sometimes just having a parent advocate sets a different mood for the team because they’re having an outsider sitting there,” she said.


Ostlund said the parents may come away from the IEP meeting feeling they did not win everything they wanted.


“I reassure them that we’re not done,” she said. “We’re going to look at some other avenues.'”


Ostlund also tells parents they can request to have a meeting with the IEP team anytime.


“They have that right,” she said. “Just because they’re done (with the annual meeting), they don’t have to wait another year to have another meeting.”


Parents are notified of their rights the first time they are approached about their child being in special education.


“But sometimes parents are so emotional that they need to be reminded,” Ostlund said.


State and federal laws guarantee certain rights for parents of children in special education. Among those rights are to request access to educational records, to receive prior written notice about changes and to request placement of an alternative setting, according to a Kansas State Department of Education handout, “Parent Rights in Special Education,” which is available from the Marion County Special Education Cooperative.


Parent advocates acknowledge the ongoing challenges parents face. Many live with the tension of wanting their child to be included in the regular classroom, but they recognize the needs of their child may have to be met in another way.


Also, parents often have to cope with stressful situations at home.


“Parents live with the handicapping situation involving a child all but six hours of the day while the child is in school,” she said. “They live with their child the other 18 hours.”


Whatever happens to the child at school can “make or make break that parent’s day,” Ostlund added.


Talking with someone who has a listening ear can alleviate some of the emotions.


“Just to know that someone is listening helps a parent a whole lot,” she said.


Some areas provide parent-advocate groups. Members of the group are trained to serve as advocates.


Currently, there is no parent-advocate group in Marion County, although an organized effort existed a number of years ago, said Fred Miller, director of the Marion County Special Education Cooperative.


“I wish there were parent-advocacy groups in the central (Kansas) area,” Ostlund said.


Resources are available to parents of children with special needs and are often listed on the material available through the special education cooperatives.


Ostlund recommends parents visit the library for the Associated Colleges of Central Kansas in McPherson. Parents can access literature and videos about a wide range of topics dealing with children who have disabilities.


“That door is open to anyone-the general public,” she said. “Everyone should take more advantage of the ACCK library.”


Ostlund emphasizes the value of teamwork.


“As an advocate, I would hope to come away from the (IEP) meetings recognizing that the family and educators are working together for the benefit of the child.”

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