By Heather Graves
Staff Writer
BROWN COUNTY – Parents of special education students are driven by the instinctive need to help their child.
Districts are tied to federal- and state-mandated rules and regulations.
Though the end goal of all involved is to help students succeed, the path to get there can differ drastically, and sometimes spark frustration.
It’s a journey no parent is ever prepared for, but it’s a road these parents walk daily as they advocate for their children’s success.
The long road
From the time she wakes up in the morning until the time she goes to bed at night, Green Bay parent Denise Seibert’s entire life is centered around her son, Tyler.
At just 2 weeks old, Tyler was diagnosed with fragile X syndrome, a genetic condition that causes a range of developmental problems, including learning disabilities and cognitive impairment.
“I carry a genetic disorder, an autism spectrum genetic disorder, so we had my son tested very early, right after I had him,” Seibert said. “I also have a brother who is a couple years younger than me who has (the same condition). So this has kind of been a lifetime experience with people with disabilities and kind of being in that world and mentality.”
Knowing her son would need special education services even before he reached school age, Seibert reached out to community partners early.
She credits the Birth to Three Program – a federally-mandated early intervention program supporting families of children with developmental delays or disabilities under the age of 3 – for helping make the process smooth for her, which she said is not the case for all parents.
“In the beginning, we did Birth to Three,” Seibert said. “when we realized that Tyler was suffering with some physical needs. He wasn’t walking, low muscle tone and the speech wasn’t coming either. So, we had Birth to Three in here for the first couple of years, until he turned 3.”
At that time, Tyler was transferred from the Birth to Three Program into the Green Bay School District to enter into an early childhood program for kids ages 3 through 5.
“Birth to Three helped us reach out to the school district at that time, and honestly this is all because Birth to Three helped us get to that point,” Seibert said. “I, personally, would probably be able to figure it out, but without Birth to Three, and those supports through the county, we probably wouldn’t have transitioned as smoothly.”
Seibert said Tyler was assessed, a requirement to receive services, and given an individualized education program (IEP).
“They assess him physically,” she said. “They assess his speech. They assess his knowledge on his ability to make choices – so they are asking him colors, asking him to make decisions like, ‘This is a pen and this is a phone – can you point to the phone?’ It was like a day-long process. Then we had a psychologist come in and assess his behaviors and see how he was acting. Then they put this huge form together and basically give you feedback. And they decide at that point how much service (your child is) going to need from the district.”
Seibert said services are determined by the severity of a student’s needs.
“So at that time, obviously because my son’s needs were really high, he qualified for speech therapy, physical therapy, occupational therapy and then the early childhood program,” she said. “So he was instantly put into all those services. At that time, and even now, I don’t think he’ll ever be aging out of those services, because his need is still there.”
Now 11 years old, it’s time for Tyler to make the transition from Kennedy Elementary School, a place he’s known for more than five years, to Franklin Middle School, a building more than twice the size.
“It has been a very stressful time for me, personally, going from one thing to the next,” Seibert said. “I feel a little underprepared for transitioning from one school to the next. I feel like maybe my son is not prepared.”
She said her son’s IEP team had several meetings at the end of the 2020-21 school year to spell out what the transition will look like for the fall.
“What kind of supports (is he) going to need in each situation throughout the day? What does eating look like? What does bathrooming look like? What does classroom stuff look like? What do transitions between classes look like?” Seibert said. “What kind of supports is he going to need in order to make that a successful day for him? It is really spelled out.”
Seibert said she still has reservations.
“This building is significantly bigger than the one he is coming from,” she said. “There is a lot of walking. There are three floors that he is going to be transitioning through, and that is something physically he is not prepared for.”
What is frustrating for Seibert, she said, is the lack of suggestions she receives from her son’s IEP team.
“We sat down at his IEP meeting and talked about (the transition) at length,” she said. “They really want a lot of input from parents these days, which is great. But a lot of the pushing was from me, because I know that my son is going to need these things. The staff is supportive of my decisions, but I feel like a lot of things in his plan are not necessarily their ideas. It is a lot of me putting forth ideas or recommendations, or having other creative ways to make things happen.”
Seibert said she thinks this is partly due to the full caseloads special education staff have.
“I believe the district has a lot of good intentions,” she said. “The teachers, paraprofessionals and therapists truly care about the kids and the progress they make each year. But, the staff in the district seem stretched thin. Most of my son’s team is visiting multiple schools every day to see multiple children for services. They all seem overwhelmed with workload and have less time to spend actually working with the kids on IEP goals.”
Dual needs
Berenice Lopez Sanchez vividly remembers the moment her son, Armando, was diagnosed with autism.
At just 3 years old, she knew the journey ahead for her non-verbal, little boy would be long and full of obstacles.
As a single mom in a dual-language household, she knew she would not only need to advocate for her son’s English Language Learner services, she’d now have to navigate the world of special education as well.
For 4K and kindergarten, Armando attended Fort Howard Elementary in Green Bay.
He has an IEP and was in a special education classroom with a handful of other students with similar needs.
Lopez Sanchez said his class had a special education teacher and an aide.
However, neither spoke Spanish, something she said she has repeatedly asked for.
Now age 6, in first grade at Doty Elementary in Green Bay, Armando’s struggles, while sometimes managed, remain the same.
Lopez Sanchez said they have hampered his education.
“I definitely think his progress has been hampered by not being provided a Spanish-speaking aide or translator,” Lopez Sanchez said. “I feel like he has been stuck. He hasn’t been given the necessary help that he has needed. I feel unprepared (for this school year) because I already know, just like last year, there is not going to be any additional help there for him.”
She said she has brought up her concerns to her son’s IEP team, and while they are open to listening to her concerns, she said not much has happened as far as addressing them.
She said both schools have bilingual teachers, but they teach in general education classrooms.
Because of Armando’s additional needs, he isn’t able to be in the regular classroom, which Lopez Sanchez said leaves Armando struggling.
“(The district) told me there isn’t a special ed teacher specifically that speaks Spanish, which I understand,” she said. “But, I feel like he should have a translator or somebody with him all the time. He does know some English, but he’s kind of been forced into learning it. I mean that isn’t a bad thing, but I feel like they should get him a little more help because he is non-verbal. I requested an emergency IEP meeting, but everything was thrown under the rug, and they didn’t really fulfill my requests or his needs.”
Lopez Sanchez said she often feels frustrated seeing her son struggle.
“He already knew Spanish before school, and he responds better in Spanish,” she said. “So if you all of a sudden throw him into English, it’s like starting all over again.”
Lopez Sanchez said the Green Bay School District does a good job assembling IEP teams, but said it misses the mark on addressing individual needs.
“I think they do a good job at putting the team together with the other services they offer, like occupational therapy, speech therapy and everybody else on the team,” she said. “But they need to focus more on kids’ individual needs and not just the needs of the overall class.”
Data visualization created UWGB 4th Estate Media
Two different paths
As Seymour parents of two deaf children, Aaron and Jessica Melchert have always taken it upon themselves to do whatever they needed to ensure their children’s success.
Third-grader Paden and first-grader Eloise are both deaf and have cochlear implants.
Though they share the same disability, their needs differ just as much as their personalities.
Jessica said she and her husband have often been referred to as an anomaly.
“We showed up to every IEP meeting,” she said. “We’ve called IEP meetings. We knew our rights and what we needed as parents for our children, and we pushed that envelope to make sure they got what they needed. I was probably overinvolved, because we had such a new journey.”
But it hasn’t been a journey without bumps.
The Melcherts said they were caught off guard with Paden’s diagnosis, because they thought everything was OK.
“He didn’t pass the newborn hearing screen,” she said. “We did the audiologist testing called an ABR, and were told he passed.”
Two-and-a-half years later, Eloise was born and underwent hearing tests of her own.
At that time, it was discovered Paden was deaf.
“Finding out that he was eligible for a cochlear implant, when previously being told he had mild hearing loss to, ‘Hey, no, he is actually severely to profoundly deaf,’” she said. “We’ve had quite a journey.”
Jessica said the next several years would be both challenging and uplifting.
“I learned so much,” she said. “We’ve looked into all the gamuts of what we are supposed to be getting, what we could be getting.”
So when Paden was ready to attend school, Jessica said it was about the best fit for him.
At the time, the Melcherts lived in the Freedom School District.
Together with Paden’s Birth to Three team, the Melcherts made the decision to send Paden to the Green Bay School District.
“They found our best situation would be to go to Green Bay, because they were what would be considered the best school for deaf and hard-of-hearing students,” Jessica said. “He still wasn’t wearing hearing aids. He was just learning sign language, and he had minimal communication. So Green Bay was 100% the best fit for him at that time.”
She said Paden attended Green Bay until the 2019-20 school year, and thrived.
“We got notice in May 2020 – right during COVID – that Green Bay was having staffing issues in deaf and hard-of-hearing special education teachers and interpreters, and they would be pushing any open enrollment students back to their home districts,” she said.
Which is now the Seymour School District, because they had moved.
This brought a whole new set of uncertainties, but it was a move Jessica said now seemed meant to be.
Because of the struggles virtual learning created for Paden, when he started second grade at Seymour, he was at an F reading level, which Jessica said is considered a beginning of first-grade level.
“He ended second grade caught up to at-grade level because Seymour identified, recognized and put him in the right literacy program, gave him the attention that he needed and the support and met him where he was and brought him further,” she said. “Seymour really worked with us to not only test Paden and find out what he really needed, but then to specialize it to what he needed.”
Jessica said she could not have been happier with the transition from Green Bay to Seymour.
“Like to the point, when (Green Bay) says, ‘If staffing gets better in Green Bay, we can bring him back’ – and I’m like ‘Nope, we are happy,’” she said.
Jessica credits the knowledge they obtained by navigating the special education system with Paden for the success Eloise has had thus far.
“When my daughter (was evaluated), she didn’t need the special ed, she just needed a little speech and then that was it,” she said.
So Eloise was given a 504 plan – which requires districts to provide accommodating services in the public school environment for students with disabilities – and thrived in her kindergarten general education classroom.
“We knew she was a little different because she was early and had early recognition words,” she said. “Her 504 is having a mini mic for the teacher, and having full visual access to teachers’ faces.”
She said the Seymour School District has met her family’s needs.
“We ask for things and (the district) either answers our question with ‘Yes, we can do this, and let’s get that going. And yes, that is the best thing for your children.’ Or with ‘Let’s look into that and see what all our options are and find the best one that fits your family and what you need,’ which has truly been a godsend when you come into a different school district.”’
This story was produced by the NEW News Lab, a collaboration of newsrooms that focuses on issues important to Northeast Wisconsin.
Next Week: A secondary odyssey
Next week’s issue will feature the third installment in this six-part series on special education.
The story takes readers through the challenges, obstacles and resources available to families as they navigate enrollment in special education programs starting from middle school to after high school.