Just as important: A secondary education odyssey
By Heather Graves
BROWN COUNTY – The transition from elementary school to middle school, and from middle school to high school are milestones for students – new buildings, new kids, new classes, new routines.
For special education students and their families these transitions can require copious planning and are oftentimes filled with uncertainty.
A later start
Green Bay parent Katie Erickson said she has always been an advocate for her children – both of whom are autistic.
But, she said it hasn’t been without struggle.
“I don’t think it is ever easy,” she said. “And not necessarily because the district is bad, that is not what I am saying. They just don’t truly understand what it’s like to be on the other side of that table.”
Erickson said no parent can ever truly be prepared for the journey.
Her oldest son, an eighth grader at Leonardo da Vinci School for Gifted Learners in Green Bay, received an Individualized Education Plan when he was in kindergarten.
He has a 2-E label, or twice-exceptional, which means he is gifted and has a disability, which she said comes with challenges.
“The challenge with my oldest son is he has a 117 IQ (and) his vocabulary is in the superior range,” she said. “I think the only reason we actually didn’t have to fight harder (to get him an IEP), was because he was chucking chairs. He is chucking chairs and pushing bookcases over. He was completely overstimulated in the environment.”
Her younger son, who is in fifth grade at Kennedy Elementary in Green Bay, received a 504 Plan in 2020.
“I pushed the issue in January 2020,” she said. “That is when I said, ‘He needs to be evaluated. This is my formal request, start your timer right now. They said ‘Yep, we think he is a kid with a disability, but we don’t feel like he needs specialized education.’ So in March or April 2020, we got his 504, as a third grader, after having issues since 4K.”
As an information and assistance specialist at the Aging & Disability Resource Center of Brown County, Erickson is familiar with the special education system, which she said helped her move through the process with her sons.
“I think that if I didn’t do the job that I do, and have the people around me that I do, it would (have been) an even bigger nightmare,” she said.
Erickson said one of the struggles she and other parents like her face with students who have less visible disabilities is others misunderstanding disabilities as misbehavior.
“I think it is very challenging if you don’t feel like you can push back, especially with kids that fall into the category like mine, where it can be looked at as behaviorally,” she said. “I think the behavior kids are more likely to see reprimand, instead of exploring, if they have a disability.”
Erickson is proactive and plans ahead as much as she can to ensure her sons get the help they need each school year.
“Every year, I have a full profile on my kids’ strengths, weaknesses, what they do well, what they need help with and I make copies and make sure every teacher touching my child has one,” she said.
But she acknowledges it isn’t something all parents are able to do.
“I think we as a community need to do a better job at educating,” Erickson said. “Like I said, I have just kind of fallen into the resources. And being my children have autism, I have an obsessive trait of now I need to find out everything that I need to do to make this child as successful as possible, but we don’t all have those abilities to do that.”
As for district outreach, Erickson said while the effort is there, but there seems to be a disconnect between individual schools and the district.
“I think the individual schools do a good job meeting the kids where they are at and recognizing all their strengths,” she said. “The district could improve on providing more consistent messaging for staff and parents, and ensure that important communication is filtering down to all schools… There should be continuity and uniformity between them. I feel like at times the schools are very individualized, which I don’t think is always beneficial because the messages aren’t getting shared.”
Welcoming Christopher into their family through adoption at age 4, Ashwaubenon parents Al and Julie Schmitz embarked on a journey they never anticipated.
“I think the No. 1 obstacle that we had was it is very isolating to be a parent of a special needs student,” Julie Schmitz said. “I had no idea the amount of programs available in Ashwaubenon and Green Bay for students with special needs. When you don’t need them, you don’t know about them.”
She said when they began fostering Christopher in late April 2012, he was already in the Birth to Three Program.
“He transferred from his home district to Ashwaubenon with an IEP and that has just continued on,” she said.
Schmitz said it was an easy transition for his family.
As a teacher herself, Schmitz said she is familiar with the vocabulary, but not all families have that knowledge.
“I understand how with some people this is a very scary bit of information they are getting,” she said. “We were at a very difficult point here in our parenting journey, too. I called Cormier school just to ask what services would be available, and immediately they met with us. We took placement of him in the end of April. They could have easily said we will do something next year, but they didn’t do that.”
Schmitz said school therapists, the school nurse and the school social worker immediately began in-home visits.
“So you have all of these special ed department people jumping right in once I said we needed help,” she said. “And he wasn’t even old enough to qualify for 4K yet at that point.”
She said throughout Christopher’s journey, she approached it with a team mindset.
“Where everybody there, their intent is to help Christopher,” she said. “There is nobody in that room that doesn’t want him to be successful.”
Christopher, now 13, is an eighth grader at Parkview Middle School in Ashwaubenon.
Schmitz said when her son needed to switch buildings, it was an all-hands-on-deck mentality.
“So when we had a meeting with his special education teacher when he was a fifth grader, we had his special education teacher for sixth grade come to that meeting,” Schmitz said. “So they worked together to write his IEP for that transition from fifth to sixth grade and that was the same with Valley View and Parkview, too.”
Schmitz said Christopher’s IEP teams have always been open to suggestions and concerns.
“I feel like we can ask any question and have it answered,” she said. “For example, his doctor diagnosed him with autism, but he also needed to be evaluated through the district. We had a lot of questions about why that needed to happen and they were immediately answered. It didn’t make sense to us at first, but they guided us through that.”
Schmitz said the district does an excellent job communicating with parents.
“I feel like there is never a time when I have an unanswered question,” she said. “We wouldn’t have known about any of (the programs available) had it not been for the special ed teachers. That is how you form a community around yourself and your child – is by being part of these groups that have a common purpose.”
Navigating a path
Kira Mevis, 15, is a freshman at Bay Port High School.
Her mom, Patty, can’t help but look back at the journey which has brought her to this point.
At age 2, Kira was diagnosed with Rett syndrome, a rare genetic neurological disorder affecting mostly girls, which leads to severe impairments, affecting nearly every aspect of life, including the ability to speak, walk, eat and breathe.
“As parents, we weren’t prepared at that point,” Patty Mevis said. “We were muddling through this whole diagnosis and dreaming new dreams and trying to figure what was going to happen to our child.”
As a former teacher and current education and disabilities coordinator for Green Bay’s Head Start program, Mevis said she is no stranger to IEP meetings.
But she said nothing would prepare her for being the parent in one.
“It was the most intimidating meeting, and I’m a teacher and I’ve sat on IEP teams for my kids at school,” she said. “I’ve sat in on 50 of them by that point. Then I sat in Kira’s, and I understood why parents cry and how overwhelming it is.”
Mevis said ultimately, an IEP meeting is designed to identify a student’s deficits in order to provide support services.
“That is really hard to talk about – the deficits of your child,” she said. “It is heartbreaking. So there I sat with a child who couldn’t hold her head up anymore, two months in and out of the hospital. I was trying to hold down my job. I was exhausted. My husband couldn’t come because he was out of sick days. So I was alone, with a team of 13 IEP team members from the district and Kira, who was acting like a 6-month-old.”
What happened next, Mevis said, left her speechless.
“Part of an IEP meeting is also identifying the strengths, but that team put a focus on that and I was dumbfounded,” she said. “They went around and came up with 12 strengths. I could not come up with even one because she had lost everything that to me was a strength. She couldn’t stand anymore. She couldn’t feed herself. Her eyes were barely open anymore. But they came up with she loves music and her eyes are strong. Things that as a parent, I needed to hear in that moment. They helped me find Kira’s strength in that moment when there just didn’t seem to be anything left.”
Kira began her education at Syble Hopp.
“At that point, our decision was based purely on the safety of our child – like who could handle this crazy situation,” Mevis said.
When it was time for Kira to start kindergarten, the decision was made to enroll her in the Howard-Suamico School District.
“Research shows that these girls are cognitively average with their peers – they just have a body that doesn’t work,” Mevis said. “That was certainly a learning curve because a kiddo typically with those significant needs back then, and prior to her era, would typically be in a special education setting. But we saw how much she was blossoming with typical peers around. And not only her ability to blossom in that environment, but the kids around her were learning so much, too.”
Kira attended Bay Harbor Elementary School from kindergarten through fifth grade.
“It was through a lot of learning and a lot of trial, but she had phenomenal teachers who were willing to really embrace this inclusion model – not only for Kira to learn, but also to provide opportunities for her peers to interact with her and become friends,” Mevis said.
She said Kira developed strong friendships in elementary school, which transitioned with her to Lineville Intermediate School.
“And with the Lineville staff, we were met with open arms and they were willing to learn,” she said. “I realized how important it was to try and select teaching teams that were willing to embrace the challenges that Kira offers.”
Mevis attended several conferences, reached out to other Rett syndrome families and said she has done everything she can to be an advocate for Kira.
For several years, she would visit Kira’s classroom and talk to the class.
“I wanted them to be familiar with (Kira),” she said. “I have also always sent a letter – through about fifth grade – to kids in her class. You know, ‘This is Kira. She is just like you. She likes birthday parties and cupcakes and McDonald’s and swimming and all those things that would resonate with kids. And then she has Rett syndrome and this is what it is. If you have questions, have your parents call me. Don’t be afraid to ask questions.’”
Mevis said they wanted to break the barrier of kids just staring.
She also created an “All About Me” book that Kira carries with her.
“How do you ever get the word out that Kira is smart?” she said. “She is in there. She understands. She has favorite colors. She likes music. These are her favorite things. So we created this ‘All About Me’ book that is for staff… It gives a little history on seizures, a little history on Rett syndrome, a whole lot about Kira and what she likes and loves and who her family is, so they can have conversations with her. It takes away some of that difficulty in getting to know a kid who is non-verbal.”
She said with Kira’s disability being severe, she feels her family was on the easier side of things in terms of getting services.
But, she said that doesn’t mean there weren’t growing pains.
Mevis said a strength an IEP team brings is a global perspective, while she is focused on a Rett-specific perspective.
“There (can be) some friction with teams and maybe what one team member feels is most appropriate might look different than what a parent thinks is most appropriate,” she said. “So I don’t know if that makes it a challenge. We were just coming at things from different perspectives.”
Kira’s next adventure is high school.
Mevis said there have been large discussions with Kira’s Bay View IEP team and her new Bay Port IEP team about what her schedule could look like.
“We’ve talked about what she should be in and are working out a four-year plan,” she said. “Because, I don’t want to run out of classes if we overload her freshman year. At some point there are not going to be a lot of classes to choose from that are appropriate anymore.”
She said the district has been accommodating and willing to learn to do what is best for Kira, to challenge her and to help her grow.
“I think they’ve done well there,” she said. “I also think there is room to grow. As a community, we need to improve on the acceptance and inclusion of kiddos like Kira. How do we bring these kids to the table and say these kids are just as important?”
Data visualization created UWGB 4th Estate Media
Verge of transition
Samantha Platkowski credits her daughter Hannah’s academic success to her teachers.
“We have had some amazing teachers and staff across grades, both special education and in the mainstream setting,” Platkowski said. “They are creative with teaching ideas, open to our ideas and suggestions and really want the students to succeed.”
Hannah, 19, has Down syndrome and has spent the last 13 years in Green Bay’s special education program.
Platkowski said like any high school graduate, Hannah is preparing to make the transition from school to “real life.”
She said students with IEPs are eligible to stay involved in public school until they are 21, but that can look different for every student.
“Hannah could have received her diploma and been done with school all together,” Platkowski said. “She could have had her diploma held and stayed in classes and continued learning. She could have her diploma held and participate in a work experience program, where the district provides job readiness programming and helps the student gain useful work experience in the community, which is what Hannah does.”
Hannah’s work experience job is at CP.
“The district provides a job coach that attends with her,” Platkowski said. “It is a paid position that she loves and (she has) gained a lot of usable job skills from.”
She said the district provides some guidance on transitions, but it is on the family to navigate the process, which she said is appropriate.
Platkowski knew Hannah would need special education services when she started school and said she did her best to prepare.
“We did take the time to learn about the system when Hannah was born, which was helpful,” she said.
Even so, Platkowski said the IEP process was difficult.
“The paperwork is wordy, and (it) uses a lot of educator terms and legalese,” she said. “It is overwhelming and for parents, requires time off work to attend meetings, which many cannot afford to do. There is a lot to know and understand, and parents can be easily overwhelmed.”
Platkowski said for the most part, getting services for Hannah was fairly easy, because she had a known and understood developmental disability.
“It also helps that we know we can ask for things to be added to her IEP, how to advocate for those needs and how to access other services outside of the school setting,” she said. “But honestly, it can be a confusing, frustrating, infuriating and all-around aggravating system to navigate.”
Platkowski said out-of-the-box thinking by teachers over the years gave Hannah the extra support she needed to succeed.
“Our daughter entered middle school unable to tie her shoes,” Platkowski said. “When our daughter asked to play basketball, her teacher collaborated with the coach and players, and the players helped Hannah learn to tie her shoes.”
Hannah expressed interest in speaking at her graduation.
“Teachers and staff at West (High School) were very supportive of this and helped her write, revise and practice her speech,” she said.
Platkowski said she wished she could say she received the same support from Green Bay administration.
She said communication, accessibility to extra curricular activities, lack of information (or dissemination of information) on available resources and the bureaucratic red tape contribute to the barriers special education students and families encounter as they navigate the system.
“Communication between administration and teachers is lacking and is often inconsistent,” Platkowski said. “Even from a district office to school administration level, communication is lacking.”
She links teacher shortage issues to the lack of support teachers and aides receive.
“Teachers and (aides) are not supported by (the) administration and district staff,” Platkowski said. “These are jobs that have a high rate of burnout, are high-stress, high-anxiety and take an emotional and sometimes physical toll on the staff members.”
The University of Wisconsin-Green Bay, 4th Estate Media, made a searchable special education database that goes along with this series. It can be found in the online story at gopresstimes.com.
This story was produced by the NEW News Lab, a collaboration of newsrooms that focuses on issues important to Northeast Wisconsin.
Next week: The weight of the job
Next week’s issue will feature the fourth installment in this six-part series on special education.
The story explains the role special education directors play in the process and the challenges they face.