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Duluth parents fight for their special needs kids

Duluth News-Tribune - 3/2/2020

Mar. 2--Adrienne Payne has been fighting for her son, J'Ames "Mazi" Stewart, since he was diagnosed as nonverbal autistic at age 2. Payne's fight for her son's education has gone as far as pleas to the Duluth School Board, to lawsuits, to most recently, complaints to the Minnesota Department of Education.

"I would be fine with just being shy and not talking to anyone and just doing my own thing," Payne said. "But he can't talk and who else is going to fight for him? Who else is going to stand up for him? So he kind of forces me to do something that's very uncomfortable for me, that's not necessarily a natural thing, just because I love him so much.

"He's changed my life in so many different ways. So I feel like I owe it to him to fight these battles and keep fighting until we get to a better resolution."

Payne's latest fight has been to get a paraprofessional or teacher for Mazi who knows sign language and can communicate with him. Because Mazi is nonverbal, he uses other methods to communicate with people. Sign language has been his preferred method of communication.

Of those who are diagnosed as being on the autism spectrum, about 30% are considered nonverbal, said Michelle DeRemer, coordinator of the speech-language pathologist team at the Minnesota Autism Center. DeRemer said children are diagnosed as nonverbal when verbal communication is not an effective method of communication for them.

According to the Centers for Disease Control and Prevention, about 1 in 59 children are identified with autism spectrum disorder. The Minnesota Autism Center offers a broad range of programs for children and youth with autism spectrum disorder: early intervention, life skills development, group learning and school readiness opportunities.

Navigating a difficult process

Payne said that after she accepted that Mazi was autistic, she went into research mode.

"I read everything I could," she said.

Students who are considered special education, like Mazi, have to have an individual education plan, also known as an IEP, that is created by the parent with the help of a team of specialists at the school district where the student is enrolled.

The plan outlines goals for the student as well as related services the school district will provide the student at no cost to the parents. Navigating the IEP process can be challenging for parents. When they have questions or need training, the PACER Center in Minneapolis steps up to help parents understand how an IEP works.

"We are a place for information training and support for families or children with disabilities and for resources on bullying prevention," said Virginia Richardson, manager of parent training at PACER Center.

The PACER Center is a mostly free resource for parents with children who have disabilities. The nonprofit organization provides training as well as a variety of materials to help parents become better advocates for their children. Richardson said parents seek help from the center for a variety of reasons.

"Sometimes the child isn't making progress in school," Richardson said. "Sometimes parents think the child needs more services."

Students with disabilities have to meet certain requirements to qualify for special education services because there is specific money attached to those services. If a student doesn't meet the requirements for special education services, parents can fill out a Section 504 plan, which allows students to receive accommodations and modifications to their education.

The plan covers a broader range of impairments or disabilities such as problems with walking, seeing, hearing, speaking, breathing, learning, working, caring for oneself, eating, sleeping, standing, lifting, bending, reading, concentrating, thinking, communication and more. The plan can also be used for short-term impairments or disabilities ranging from a broken leg to battling cancer.

"We have a lot of material that helps people understand special education, which is kind of a complex system, so we try to present the material in a way that parents can understand," Richardson said.

Richardson said that PACER will help prepare parents for IEP meetings so they understand what to expect, but they don't typically attend IEP meetings.

"We always encourage the parents and schools to try to work together to solve the problems," she said.

Parent-advocates in continuous battle

Richardson has been with PACER since 1980. Her own experiences prompted her to get involved with the center and are also why she has stayed so long.

"I have a daughter that has cognitive disabilities as well as epilepsy and seizures that greatly impacted her life," Richardson said. "Trying to have her accomplish what she could and having her learn as much as she could was more of a challenge than my kids who were in regular education."

Payne also said she's had to fight more for Mazi than she did for her other children who don't have disabilities.

Melissa Neumeyer, of Duluth, also has two children who have autism. She has been their advocate since they were diagnosed.

"My kids were diagnosed in 2007 and ever since then, I've been really obsessed with researching how to reach them: what does this mean; what does that mean; how do I approach this; is this good or bad?" she said. "I'm constantly trying to figure out how to give them the happiest, most well-rounded life I can."

Neumeyer said she takes advantage of every possible opportunity to read, attend training and participate in webinars so she can learn about her children's disabilities and ensure they get the best education they can.

Being an advocate for a child with disabilities can be straining and tiring. At a recent Duluth School Board meeting with U.S. Rep. Pete Stauber, board member Alanna Oswald opened up about her struggle to fight for her son, who was diagnosed with autism.

"You're always labeled that difficult parent if you push too hard, and then you just have to own that. Yeah, I'm that difficult parent because my kid is worth it," Oswald said. "Not everybody has the strength to do that and going up against the system can be very intimidating."

The Duluth School Board met with Stauber to talk about the lack of funding for special education at the federal level, which provides about 6% of funding in Minnesota. Oswald said a lack of funding in special education creates a lack of resources, which causes needs to be prioritized.

"A lot of kids that have needs often get bypassed because you can't do everything for everyone, so it takes a bulldog of a parent to get those needs fought for with what's left over, and not every parent has the time or the energy or even the know-how to advocate for their kids," she said.

Payne said fighting for her son and being the advocate he needs is continually frustrating.

"We shouldn't have to fight tooth and nail for everything to get done for our kids. It should be given to all kids," she said. "I shouldn't have to go to the school board meeting and fight for things. I shouldn't have to fight for the bare necessities to get him through a day and get his needs met. I don't think that's fair. I think that's wrong."

Information for parents

PACER Center

* Mission: "PACER Center enhances the quality of life and expands opportunities for children, youth, and young adults with all disabilities and their families so each person can reach his or her highest potential. PACER operates on the principles of parents helping parents, supporting families, promoting a safe environment for all children, and working in collaboration with others."

* Hours: 8 a.m.-5 p.m.

* Contact the center: 952-838-9000

* More info:

Minnesota Autism Center

* Mission: "The Minnesota Autism Center's mission is to provide center-based therapeutic services for children and adolescents affected by autism spectrum disorder, promote the general education and welfare of persons challenged by ASD and support the development of healthy families."

* Locations: Duluth, Eagan, Eden Prairie, Fridley, Minnetonka, Woodbury, Mankato, Rochester

* Duluth Therapy Center serves: 18 months-21 years

* Hours: 8:30 a.m.-4:30 p.m. Monday-Friday

* Contact the Duluth Therapy Center: 218-729-7150

* More info:


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