‘I felt like I was drowning’: Students with individualized educational needs struggle to keep up with remote learning, parents say

When Crystal Lake resident Jackie Tonyan heard that Crystal Lake Elementary School District 47 schools planned to begin the fall semester with remote learning, her heart sank.

She worried her son, Daniel, would fall further behind without access to the in-person, specialized programs he typically receives.

“When it all came crashing down, I was like I can't be a speech therapist, I don’t know how to do [occupational therapy] ... I don't know how to do all of this without their support,” Tonyan said.

“I felt like I was drowning trying to help my own son, which is painful, and I keep thinking over and over, like, I'm supposed to be mom. I want to be – I just want to be mom.”

Most of McHenry County's school districts are working to bring students with individualized needs back for in-person services as soon as possible, although not as soon as some local parents would like. They feel their children's growth is regressing in the absence of special therapies and human connection. Other parents prefer the safety of remote learning but need more support.

Corinna Sac, a small business owner and Huntley resident, said after being a teacher to her two kids all day and running her business all night, she typically has time for about four to five hours of sleep before she has to get up and do it all over again.

“I'm not bringing in any income right now, and I won't be until the kids go back to school,” Sac said. “It's just how it has to be. We can't let the business close, and I still need to pay my workers.”

In a time when many local school districts are opting for a remote or hybrid learning approach, Cary resident and advocate for the autism community, Johna Sommer, said students with individualized education programs are faring differently depending on where they live and how much time their parents can dedicate to their schooling.

Crystal Lake High School District 155, which serves Cary and Crystal Lake, allowed students with the highest levels of specialized service needs to come back for full in-person learning right away and has offered a hybrid approach to others with IEPs, said Kim Dahlem, director of student services.

Cary-Grove High School senior Danny Brezina said the hybrid approach is much better than remote learning, which he said was "boring," but he misses participating in social activities like the school's art club.

"[Making art] feels like you're being set free doing whatever you want ... it just sets me free," Brezina said.

Brezina's mother, Missi, said her son, who has autism, ADHD and anxiety, has struggled a bit without full access to the in-person social programs that he is used to, but otherwise, District 155 has "really put their best foot forward" in supporting IEP students during the pandemic this fall.

About 13% of the District 155 student body, or about 750 students, have an IEP and about 7% have a 504 plan, Dahlem said. She distinguished the two, saying IEPs serve as a way to individualize a student's educational program while 504 plans deal more with how a student can access their education in a way that may be more suitable to their needs.

“I think what has set us apart from some of the other districts is that we started right away with home visits and started right away with teletherapy and high levels of parent engagement,” Dahlem said.

In the spring, district staff personally delivered educational and therapy-related tools as well as more "high-tech" materials to each student on an IEP plan so they could access their education, she said.

As remote learning continued into the fall, the general consensus was that more real-time, or "synchronous," remote learning was needed to keep students engaged and to keep parents sane, Lisa Pearson, Woodstock School District 200's director of special services, said in a statement.

The county's school districts tasked caseworkers with modifying IEP plans to be more conducive to remote learning early on, but districts haven't received any guidance from the Illinois State Board of Education on how they should go about making up for missing IEP hours when certain services, such as physical therapy, simply cannot be replicated at home.

District 200 recently brought back their low-incidence students, or students with the highest level of specialized needs, for in-person learning with very strict safety measures in place, Pearson said in the statement.

Parents and students aren't the only ones who miss the good old days of face-to-face schooling, she said.

"It's been wonderful to see these kids again," she said in the statement. "It has brought tears to my eyes seeing how excited both the students and staff are to see each other. It's been really hard on everyone to be apart for so long."

For students that aren't able to return for in-person learning yet, Pearson said maintaining open communication between families and staff will be crucial in ensuring that each student's needs are met.

District 47 has recently allowed students to return to the building for certain in-person services like occupational therapy, speech therapy or social work, Director of Special Education Anthony Brooks said.

In the next phase of the district's plan, which they are hoping to launch in a few weeks, students in self-contained special education programs will return for in-person learning and other students with IEPs will move to a hybrid approach, she said.

Crystal Lake's Tonyan said she is used to having the support of a whole team of teachers, therapists and paraprofessionals who have comforted her over the years by saying that her role in her son's life is as his mom and that she should leave the rest up to the trained professionals.

“What they could make happen for him and through him – I was always in awe of what he could do and I still am,” Tonyan said. “But it breaks my heart to see the undoing of a lot of that that we just can't replicate here at home."

But having that team remote isn't the same for Daniel, who has fragile X syndrome, a genetic condition, as well as autism and ADHD, meaning it takes him a bit longer to reach milestones like being able to read and write, she said.

Just a week before Glacier Ridge Elementary School switched to remote learning in the spring, Tonyan and Daniel's IEP team celebrated his success in writing his own name for the first time – a feat which she said he is no longer able to do.

After logging on for the remote school day, Daniel, 9, gets frustrated by the confusion of seeing his teachers but not being able to be with them, Tonyan said. He often logs himself off or, on tougher days, sends the computer sailing across the room.

“He reads body language and physical touch and redirection, and he can read a room,” she said. "He's drawn to people, drawn to kids, and so he doesn’t feel any of that from a screen, he can't relate to it."

Huntley School District 158 parent Keri Hubbard has also been frustrated with the remote learning.

Last year, her 9-year-old son, Kolten, was in a special education classroom with eight other students, but because Hubbard is a single, working parent, Kolten and his brother now do their e-learning in a daycare center with 15 kids and two staff.

The staff are unable to give Kolten the attention he needs, and Kolten is also exposed to more children than he would be at school, she said.

"It just doesn't make any sense," Hubbard said.

District 158 announced Friday that it will begin bringing students in self-contained special education classes back to their school buildings "on a limited basis" this week.

The district has been following the stages laid out in its reopening plan for students with IEPs and bringing students back for in-person learning any sooner simply would not have been safe, said Sue Waughon, Huntley's director of special services.

Sac and a group of other D158 moms whose students have IEPs created a list of suggestions for the district that would improve their kids’ learning experiences. Sac said she thinks it is safer for kids to stay home for the time being but this district has to do more to support parents of kids with special needs.

For younger kids who cannot read, Sac said district schools should make audible instructions available for online assignments so they can work independently.

“What the district was promising us is that a lot of the pressure would be taken off the parents this year and there would be Zoom meetings and more help with the students, but we're really not seeing that,” she said.

The list of suggestions also includes recording live Zoom sessions for families who may need to do their schooling in the evenings, as well as offering free daycare services for working parents.

District 158 is partnering with the local Boys and Girls Club to offer childcare for students with financial support options for those who may need it, Waughon said.

Sac's list also requests more one-on-one or small group sessions for students who receive special services, which Waughon said teachers have begun doing through "break-out sessions" on the Zoom platform.

The statement released Friday by the district urged parents to continue providing feedback.

"We hear all of it, feel all of it, and take all of it to heart," according to the statement.

The Special Education District of McHenry County, or SEDOM, has a list of steps parents can take before their IEP meetings to better advocate for the needs of their children.

Sommer is a mentor with The Autism Community in Action, or TACA, a national organization providing resources and support to families of children and adults with autism.

For Sommer, the switch to remote learning made her realize what it's going to be like once her 19-year-old daughter, who has autism, ages out of Strive, District 155's transitional program for young adults with disabilities.

“It made me realize what life’s going to be like when the bus stops coming, what life’s going to be like when she has none of the school supports,” Sommer said. “Of course, I’ve been thinking about it. Of course, I’m planning for it. But when it’s there in front of you, right? It’s just … another set of emotions.”