Less Sympathy, More Joy: 5 Strategies for Improving Early Intervention from a Parent-Practitioner Perspective

“I had asked a teacher to take some information down around what he was doing,” she says. “I got a list of everything he was not doing. It was really deflating.”

That experience is not uncommon for parents of children with disabilities. For many, the assessment process in early intervention and early childhood special education focuses on the negative and is often infused with sympathy—the kind that sometimes leads a well-meaning practitioner to express condolence—“I’m so sorry about this diagnosis”—which can leave families feeling pitied rather than supported. 

Becky Hoffman, MSE is an experienced early intervention professional. She is currently a Professional Development Specialist for Wisconsin’s Part C Early Intervention: Birth to 3 Program and an adjunct instructor at the University of Wisconsin-Oshkosh. She and her family also went through a lengthy diagnostic process with their son, who has a condition known as focal cortical dysplasia. Hoffman emerged from that process with a clearer understanding of how emotionally depleting the process can be for families

“Most of my years were in early intervention as an EI educator and service coordinator,” she says. “It’s different from the other side. You understand it in a different way, and you bring all the emotion as a parent to that process,” Hoffman says.  One of her most important takeaways? “We don’t have to drown families in sadness and trauma when there’s a disability.” 

Second grade teacher Holly Dregne experienced that overwhelming sensation firsthand. “Nine years ago, my son Eli was born. Within 24 hours of his birth, he lost 10% of his bodyweight. We were very quickly flagged as a family that needed help,” she says.  For weeks afterward, doctor after doctor looked for an explanation, many of them bombarding her with all the things Eli would likely never do. The experience changed her professionally and personally.

These practitioner-parents say there’s another way. We can celebrate individuals, helping each family access the support they need while remaining connected to the myriad joys of their journey.

Learn more about assessing early development here.  

Increasingly, however, practitioners are adopting a social model of disability to guide them in professional practice. Instead of focusing on the limitations of the individual, a social model of disability addresses the ways a person’s environment contributes to their disability-related challenges.

Ann Mickelson, PhD is an Assistant Professor of Special Education & Child Development in the Department of Special Education and Child Development at UNC Charlotte. She’s also the parent of a child with a disability. Dr. Mickelson distinguishes between the medical and social models this way: “The medical model is all about centering the problem in the individual. The ultimate goal is to fix what’s wrong with that individual so they’re more like everyone else, instead of thinking about fixing what’s around the individual so they can function like everyone else.” 

Start with Listening

“Listening should be the thing you start with, always,” says Hoffman. “We can listen or give pause for families to share what they want to share about their child, their day, and their family. The medical professional who diagnosed Ben with a seizure disorder starts every visit with a question: ‘What’s on your mind?’ or ‘What’s on your heart?’ We’ve stayed with him because he’s listening to us, and not just listening to count how many seizures he’s had in the last month but listening to how that impacts us.”

Listening to family stories is an excellent means of identifying strengths, resources, concerns, and priorities. It can be formalized through interviews and observations, and it can take place informally, as it did in conversations with Ben’s doctor. Practitioners sometimes call this “viewing the child through the lens of the everyday.” 

Hoffman explains, “In Part C early intervention, authentic conversations are part of the assessment of the family—understanding that child through the context of what’s happening in their life. We’re not just asking, ‘How does your child’s inability to walk impact your day?’  We’re saying, ‘Tell us about your day.’  This approach can and should be central in all assessment processes, regardless of the age of the child.

“If you’re a person who has lots of knowledge,” Dregne says, “be careful what you share and how you share it, because you could be crucial in our family’s journey, and you could also be horrific.”

Learn more about building authentic connections with families here.  

Dispel False Narratives

The stories we tell ourselves and each other about children can change the way early intervention and other services feel for families. It’s often helpful for families when narratives begin with what a child can do, rather than what hasn’t developed yet.

Says Hoffman, “We need to acknowledge every child's strengths and potential for growth. I like to say that the ‘can'ts’ should be ‘not yets.’ They might be able to do that down the road. Sometimes that small change in the way people phrase things makes a difference.”

Preconceived ideas about disability are a huge obstacle to telling more helpful stories. Dr. Mickelson says, “For me it comes back to stereotypes, interpretations, and assumptions that we’ve all been socialized to believe—that if you have a particular diagnosis you will never do something. It’s related to the layers of expectations we have for kids.”

Those expectations affect parents, providers, and children who hear a negative story about themselves over and over again. Dr. Godfrey-Hurrell recalls how her son clamped his hands over his ears in parent-teacher meetings so he wouldn’t have to keep hearing about what he could not do. “Stop, mommy,” he told her.

“He will purposely try to deflect or move the conversation to something else,” she says. “He gets tired of hearing the negative talk.” 

“It’s not that we’re not wanting to address things,” Dr. Mickelson explains. “We’re going to strive, as practitioners and parents, to improve things, to build skills and build their knowledge in any of our children. It’s changing the tone of the conversation away from a list of everything that’s going wrong, shifting to ‘Here are some things that are awesome, and here are some next steps.’”

The aim is to avoid narratives that are wholly negative, because, she says, they’re sticky. “False narratives are like Gorilla Glue,” Dr. Mickelson says.  “Once we find something that’s ‘the answer,’ it just sticks. The mind is no longer open to it being anything else, even if something isn’t fitting. We had a misdiagnosis, and it took a year to get past the misdiagnosis and get the appropriate treatment.”

Dr. Mickelson notes, “When you actually see kids for kids, that’s what makes room for joy.”

Finding time for this kind of holistic approach can be challenging for practitioners with large caseloads and conflicting deadlines. “It’s a challenge that our particular field has to overcome, especially in special education and with medical professionals working with children who have health issues,” Dr. Mickelson says. “You’re part of that family’s and child’s life because of that disability…We have to work a little harder to really get at the authentic thing that’s happening for this child and family globally.”

Learn more about whole child assessment here.  

Appreciate How Far You’ve Come

One way to find joy in the early intervention process is to track and celebrate progress. Dr. Godfrey-Hurrell still has that letter her son’s teacher penned years ago, outlining all the things he could not yet do. She keeps it, both as a reminder of what not to do in an evaluation, and as a marker of how much her son has grown. 

“For our family, that has been our guiding light—to see how far we’ve come, and how much he’s overcome, and how much of a fighter he is, and how wonderful people should feel to have him in their life,” she explains.

The same has been true for Dregne and her family. “The best part was when we proved everybody wrong. He was my third child, and he did all the same things the other two did, but he did them a lot slower and with more support,” she says. “But every time he’d do something they said he never ever would, I would think, ‘I knew he could.’ It’s made me a better advocate for families.”