When her son was in third grade, Jess LaMay decided she’d had enough.

LaMay’s son was diagnosed with autism when he was 1. From age 3 onward, he had been enrolled in special education programs at Meriden Public Schools. Much of that time, LaMay said, had been a battle. A battle for services, communication, time with his nondisabled peers, and, most recently, for someone to explain why he was coming home with soiled clothes and handprints of feces on his back.

That clarification never came, however, and LaMay was fed up. She and her husband sold their business, K LaMay’s Steamed Cheeseburgers, and began looking for somewhere to move.

Then, quite by chance, LaMay met some other Meriden residents who were forming an organizing committee to advocate for issues of importance to the town, such as education. Instead of moving, LaMay became an advocate herself, connecting with other Meriden special education parents, meeting with stakeholders from around the state and urging the General Assembly to approve more funding for her district.

“I started really kind of realizing that I wasn’t alone in this fight, and that there were people trying to change the narrative and what was going on,” LaMay said.

On Saturday, LaMay and her fellow organizers put on Meriden’s first-ever Strides for Neurodiversity Walk at Platt High School. The event sought to raise money for Meriden special education — the very system that nearly drove LaMay’s family to leave town a couple years earlier — and put pressure on state lawmakers to act.

“I’m hoping that it opens some eyes. Like, look, Meriden’s out here, the parents are out here working because you guys aren’t doing what you’re supposed to do at the state level,” LaMay said.

The challenges LaMay and her son faced are not unique to them, or to Meriden. The Connecticut Mirror has spoken with parents in towns across the state who have similar stories, from unexplained injuries to systematic Individualized Education Program, or IEP, violations to classrooms that don’t even have a teacher. The processes to hold schools accountable are cumbersome, opaque and often fail to provoke the changes parents hope for.

Not that many schools are in a good position to fix things, either.

Special education is expensive but doesn’t factor into Connecticut’s main school funding formula, leaving towns to shoulder many of those costs themselves. There’s also a statewide shortage of special education staff — certified teachers and paraprofessionals — and positions aren’t easy to fill, especially in financially strapped districts like Meriden or New Haven that can’t offer competitive salaries.

“Their hands are tied because they don’t have the supports. So that’s why they give these, you know, people like me that pushback,” LaMay said.

For parents of kids with disabilities, the stakes often feel enormous. Special education is the system they rely on to ensure their children reach their full potential. It’s where a nonverbal child builds language skills and a child with behavioral challenges learns to self-regulate. In theory, it’s what sets them up to achieve everything they can in the course of their lives.

That’s the idea, at least.

Not enough money, not enough teachers

Meriden is one of Connecticut’s least wealthy school districts, meaning it’s highly dependent on the state’s Education Cost Sharing, or ECS, grant for money.

Just about everyone agrees ECS doesn’t provide enough — its formula hasn’t received an inflation adjustment since 2013, and it doesn’t weigh special education at all, even though those are some of the highest costs for districts. The state has a couple other special education-related grants, but they still leave significant gaps.

Generally speaking, it’s much cheaper to educate children with special needs in-district. That’s one reason Meriden tries to keep as many kids in its district as possible, said Director of School Leadership Daniel Crispino, who oversees its special education services. The other reason, he said, is that it’s generally best for kids to stay in their home district if possible.

If a district can’t meet a child’s needs, it turns to an outplacement program. These are among the highest costs for special education services, Crispino said.

“It could be $200,000 just for the top. Then you have another $50,000-plus for transportation. And then some of our kids are so significantly impacted medically, it could be another $100,000 for one-on-one [nursing],” Crispino said.

The state’s excess cost grant may reimburse some of that, but only if the cost gets high enough, and often only partially.

But running in-house programming has its own challenges — namely, providing enough staff and services to meet every student’s needs.

“Your [special education] class sizes that were originally hoping to be around eight students, well, now that’s just not possible,” Crispino said. “We don’t have enough to add as many teachers as we would need.”

On top of that, there are the “inclusion” students — special education students who don’t go to a separate classroom but remain with their general education peers, typically with some kind of additional support like a paraprofessional who helps them regulate and manage classwork.

As those numbers increase, too, “your caseloads are higher, it’s more paperwork, more students that you’re having to service, more PPTs [Planning and Placement Teams],” Crispino said.

In Connecticut, PPTs are the teams that meet to develop and update an IEP — the plan outlining the child’s special education needs. Those meetings are where the critical decisions about services such as speech and occupational therapy are made. Every child in special education has a PPT, and every PPT includes administrators, teachers and parents.

Meriden works out how to distribute its resources over the summer, but if more kids transfer into the district over the course of the year, those plans begin to unravel.

When students with outplacements transfer into Meriden, the district also assumes the cost for those $200,000-plus services. “That, you certainly cannot prepare for,” Crispino said.

It all leads to a system under significant financial strain — the same system parents like LaMay rely on to ensure their children get the education they need.

“I think that the state level absolutely needs to do something and provide more,” LaMay said. “But while that’s happening, I feel like the district should be making changes with what they have to make it better and safer.”

How it started

When her son entered Meriden’s pre-K special education program — known as PRIDE, or Preschoolers Receiving Individualized Developmentally-Appropriate Education — LaMay was “taken aback by the minimal amount of services they were offering.” She arrived at PRIDE not only with a diagnosis, but a note from a doctor detailing the support her son should receive — including over an hour a week of speech therapy. 

When the school agreed to give him just 15 minutes a week instead, LaMay was nonplussed.

Under the federal Individuals with Disabilities Education Act, or IDEA, schools have to provide all students with what’s known as a free appropriate public education, or FAPE. Exactly what that education looks like must be determined based on the individual student’s needs — as laid out in the IEP, which parents negotiate with schools. 

Parents are supposed to be an equal member of the PPT meetings where IEPs are hammered out, but in practice, they sometimes feel ignored, belittled or outright intimidated. Many arrive with no knowledge of IDEA or what services their children actually need and lack a robust support network.

Not one to back down, LaMay educated herself on her son’s condition and the rules around IEPs. She connected with the Connecticut Parent Advocacy Center, which supports families of children with disabilities and which sent an advocate to participate in the PPT meetings with LaMay.

Legally speaking, it doesn’t matter whether a school actually has the resources to fulfill a student’s IEP. They just have to do it, even if they know they won’t get any extra funding for it.

“We don’t make determinations based upon resources or availability. That’s like, No. 1 IDEA principle,” explained Kathryn Meyer, a New Haven-based attorney with the Center for Children’s Advocacy who represents parents navigating special education.

But those material challenges don’t just go away because of what the law says, creating a systemic pressure to push back on parents trying to add services to an IEP.

Crispino acknowledged the difficulty. “We’re trying to provide free appropriate public education without the funding to do so,” he said.

In spite of the friction, Meriden was ultimately responsive to LaMay’s requests: It agreed to an hour of speech therapy, still less than what her son’s doctor had recommended but significantly more than the original offer. LaMay also managed to secure occupational therapy for her son after bringing in an outside occupational therapist to talk to the school.

Occupational therapy teaches children life skills they may otherwise struggle with: eating, opening things, putting on buttons, and so forth.

A few years after LaMay’s son was diagnosed, fellow Meriden parent Shayna Rodriguez began to notice her daughter wasn’t behaving like a typical toddler. At 3 years old, her daughter wasn’t excited to see her mom when she got home from work.

There were other signs, too. She didn’t react to her own name, and she was what Rodriguez used to call “flappy.”

“She would stim a lot. I now know that. And she did not talk,” Rodriguez said. “Stimming” is a repeated behavior someone engages in to self-soothe; it is not limited to people with autism but is often associated with the condition.

Rodriguez’s daughter was diagnosed with autism not long after. Rodriguez enrolled her in a Birth to 3 program in Meriden, and then in PRIDE, where her daughter received an IEP.

In the beginning, Rodriguez said, she knew very little about her daughter’s condition, or what to expect from the school, or what she could push for. She didn’t know anyone else navigating special education with an autistic child, and what knowledge she did have often came from Google. 

“All alone” was how Rodriguez described herself those early days. More than anything, she wanted to feel like everyone was on the same team. Instead, she sensed resistance from the school. 

“It just feels like there’s a wall up. There is a disconnect between parents and staff,” she said.

That was especially problematic, Rodriguez said, because her daughter was nonverbal and couldn’t tell Rodriguez about her day herself. Rodriguez said there were signs the teacher may not even have been in class some days.

“Whoever worked with her might not have known her well, because she would come home in somebody else’s pullup or with remnants of food on her face that I didn’t send her to school with,” Rodriguez recalled.

Eventually, Rodriguez began sending her daughter to school with a communication journal. In the morning, she would write in the journal what her daughter ate for breakfast and how her mood was; then she would ask the school to fill out the rest and send it back. 

If the entry came back blank, she said, she interpreted it as a sign “that the staff that’s normally in the room may not have been present.”

Although he couldn’t discuss specific cases, Crispino said he’s put an emphasis on communication since taking charge of Meriden special education a year ago. He said proactively keeping parents in the loop makes a big difference to how they experience the system, even if there are issues.

“If you’re giving specifics and you’re asking the family to be a partner in the work … more often than not, the parents would be willing to participate,” Crispino said.

Conversely, if “all of a sudden, you call a parent and say, ‘Hey, I just wanted to let you know for the last two weeks your son or daughter was doing ‘blank,’ you are going to lose that parent,” he added.

Like LaMay, Rodriguez also had to push for speech therapy. And her request for occupational therapy was denied for reasons she didn’t find convincing.

But then, the second year in PRIDE, everything seemed to shift.

“The teacher that we had and the SLP [speech language pathologist] that we had were amazing,” Rodriguez said. “They answered every question that I had. They wrote in the journal every single day.”

The SLP even advocated for Rodriguez’s daughter to get more speech services in kindergarten, a marked change from the year before. Rodriguez said she also began coming into her own as a mother of a child with special needs. She also got to know other parents, including LaMay.

“I’m not all alone now,” Rodriguez said. “I have built my own community through this.”

Entering a new program, challenges start anew

In kindergarten, students like Rodriguez and LaMay’s children enter Meriden’s elementary STARS, or Students and Teachers Achieving Remarkable Success, program. Like PRIDE, the program is straining under a shortage of funding and teachers.

Crispino said the STARS program has grown 57% in the last three years. The students bring a broad range of needs, and the list is only growing, he said.

Rodriguez’s daughter started at STARS this year, and Rodriguez said the walls have gone back up. “It feels to me, the more questions that I ask the school, the thicker the wall gets,” Rodriguez said. 

For LaMay, whose son is several years older than Rodriguez’s daughter, the shift to STARS was when the “turmoil” started.

At that point, LaMay had leaned so far into her son’s education that she joined the district herself as a special education paraprofessional. “I wanted to help children and families because I saw firsthand what was going on,” LaMay recalled.

Her son’s problems began in kindergarten. That December, the teacher quit, and the school wasn’t able to fill the position until the following February. At the time, some COVID-19 measures were still in place, and LaMay’s son ended up quarantined three times, ostensibly because he came into contact with someone sick.

LaMay had her doubts and a lack of communication with the school only fed her mistrust. She wondered what was actually happening in her son’s class and worried her speaking out might prompt some kind of retaliation.

At the same time, LaMay was pushing for her son to be given inclusion time in general education. Per the IDEA, schools are required to educate students in their “least restrictive environment” — meaning, among other things, if a kid can handle inclusion time, they should probably get it.

In some respects, LaMay said, her son was quite advanced for his age. She described him as “hyperlexic” and capable of reading at age 3. That suggested to her that he should get time in general education.

“I wanted him to be able to thrive and grow off of the skills [from a typical environment],” LaMay said. “And I also wanted the children to have a chance to get to know kids like him and vice versa.”

She said the school pushed back. “They wanted to be able to pull my son out … if he had any little problem, instead of working through it,” LaMay said.

Her experience improved markedly in first grade — again, thanks to a new teacher. But that teacher left the following year, and things got bad again. 

LaMay learned an employee was slapping her son’s hand to redirect his vocal stims. She called the school to ask what was going on, and she said she was told in a phone call that the hand slapping was “a technique that’s widely used across the STARS program.” There is no written record of this, nor is it referenced directly in any other documents.

Crispino, who was not in charge of special education at the time, said slapping a child’s hand is “not a practice ever used in STARS.”

Then came third grade, and the repeated unexplained fecal handprints. LaMay also found out the school was leaving her son’s soiled clothes in his locker where he also kept his lunchbox, and that he wasn’t going to the gen ed time LaMay had fought so hard for.

She said her son began eloping from class, sometimes as often as 26 times in one day. He also came home from time to time with unexplained bruises or bite marks from severe dysregulation.

“At that point, I had enough,” LaMay said.

Taking matters into their own hands

What LaMay and other parents have learned is that the challenges with special education are multifaceted. A good teacher who communicates regularly can make all the difference, but without adequate funding, good teachers are hard to recruit and retain.

Based on the latest data from EdSight, Connecticut is short 205 special education teachers and 918 special education paraprofessionals. Those are budgeted positions that schools are actively trying to fill, but can’t. 

“It just makes it challenging, especially for an urban setting. And then you talk about cost, right? How much can you pay a teacher to stay?” Crispino said.

Instead of moving her family out of Meriden after her son’s third grade year, LaMay took her concerns to the state. She told the Department of Children and Families about the feces, and she filed a state complaint to get her son his gen ed time again. Nothing came of the DCF complaint, but the state did find Meriden had violated her son’s IEP due to a lack of staffing and required corrective action.

And fourth grade went just fine. “The elopement stopped. There was no more behaviors. There was no more feces,” LaMay said. She called it “probably one of the best years that we’ve had.”

She had been struggling in her role as a paraprofessional, with an increasing workload and the tension inherent in being both employee and an advocate for her son. So she quit.

But she came away with a direct understanding of why teacher quality can be so varied for students in Meriden’s special education programs. “They have a lot of positions open, but nobody’s taking them,” she said. On top of that, she said, the staff who do the best jobs tend to get more work until they burn out.

These days LaMay acts as a liaison between parents, like Rodriguez, and the school.

And she’s going even bigger — doing what she can to address the district’s financial shortcomings that make funding special education such a challenge. 

LaMay said Saturday’s Strides for Neurodiversity Walk raised about $2,500 for Meriden’s special education programming. She said she knew from the outset the event wouldn’t fix the structural gaps in Connecticut’s special education system. Her goal, she said, was to raise enough money for new classroom supplies — maybe even enough to fund a field trip for STARS students, or an end-of-year celebration for STARS families to come together.

She recalled a conversation she had with a staff member about how hard it was to get the services her son needed.

“That staff member came back to me and said, ‘You know, Jess, just because you know the district’s not handing out services doesn’t mean you should stop fighting for them,’” LaMay said. “And I was like, you’re right. You’re very, very right.”