Getting Real: Special Needs Families

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This week, leaders around the country offered their State of Affairs speeches. As the leader in your classroom, how would you respond if someone asked you to speak about the “State of Relationships with Your Special Needs Families?” How are things going? Could they be better?

This is my fourteenth year teaching. Three years ago, my family was blessed when my daughter was born with Down Syndrome. As a special needs teacher, I have gained so much perspective these past three years navigating the system with my daughter and interacting with families in my teaching world. As a careful observer with a unique viewpoint, I’ve noticed that there are some teaching beliefs that hurt teacher relationships with special needs families. I want to offer you an inside perspective through a raw, honest reflection about how my own beliefs have changed so that you might find a nugget or two of wisdom that resonates going forward.

Before I share, a caveat: I know all teachers are truly doing their very best–just like parents. I know teachers want good relationships with families and want families to be involved in their classrooms. None of what I share is meant to criticize anyone out there or create any feelings of shame. Dwelling on those feelings steals the opportunity to grow, change, and evolve into our better future selves. Also, these stories have accumulated over a long teaching career and aren’t a reflection of anyone I currently work with. (I’m happy to say that I currently work with the kindest, most compassionate educators on the planet!) Now, let’s dig deep.

Parents Are Doing Their Best–No, Really.

If you’ve taught for more than a year, you’ve probably heard someone suggest that a parent isn’t trying hard enough. I’ll admit having thoughts like this in my early teaching career. One particular moment stands out to me: A parent returned a packet of papers that was covered in dried pizza cheese and liquid that was probably coffee. Or was it chocolate milk? Honestly, it was hard to tell. Did I judge this parent? Oh yes. I remember thinking that she was a total mess. Nowadays, I cheer any time I get back papers from families: crumpled, late, or covered in food. Now I get it. I know what families are going through at home.

Parenting a special needs child is like having a side job managing a celebrity. These kids have to make guest appearances at multiple therapies each week, attend extra doctors appointments (often far away and hard to get), complete all kinds of extra paperwork, and sometimes even welcome therapists into their homes. This creates incredible amounts of stress, financial burden, and sleep deprivation for families as they plan, clean, schedule, and attend these events. If you think parents get normal sleep while their child is sleeping, you might be wrong. Many special needs kids have difficulty sleeping through the night, creating additional sleep disturbances for parents.

Sometimes it seems like parents aren’t open to resources from the community. But let me tell you, the resources out there are overwhelming! It has taken me months to book appointments because I couldn’t figure out the process or decide who to call. Was I aware and worried about it the whole time? You bet. Connecting with community is also challenging because families in similar situations are often separated by distance. This challenge makes it hard to learn from others and find true connections. I used to look at parents like me and think they were trying to hide something. Why weren’t they connected? Why weren’t they using resources? Why hadn’t they called that agency I suggested? Now I know that parents like me are just doing their very best. And also, they are probably really tired with little time to spare.

Parents Are Not in Denial

So you are in a meeting. A parent asks for something team members think is unreasonable: A goal that’s too hard, extra time with general ed peers, extra support. Privately later, someone says it: That parent doesn’t see their child’s limitations.

I get choked up even writing about this. You think that parents don’t see their child’s limitations? You are dead wrong there. Limitations–and how to decrease them–is on my mind all the time as a special needs parent. We spend tons of time with doctors and therapists who openly discuss my daughter’s limitations and work to improve them. I’m constantly noticing kids in the community doing all the awesome things that come easy to them. And just when I forget for awhile that my daughter is different than other girls her age, some random stranger will approach me and start telling me their personal story about Down Syndrome. It’s like a slap in the face that knocks the wind out of me. A stranger can just look at her and notice that she’s different? She stands out that much sometimes? These moments can be sobering. Trust me, special needs families are not in denial. They just want someone else to dream their dreams with them, to make the path seem possible. So when my students’ families ask me to dream with them as a teacher, I say: What does that first step look like? And then we make a plan and take that step together. This is not denial. It’s about setting a goal and chasing after it like it’s the best prize in the world!

See the Child

If you want to really connect with a family, here’s what makes all the difference: Make sure families know that you truly SEE their child as an individual. When my daughter was little, we were referred to many specialists. Each time, we were excited to learn how she was doing. Instead of getting this feedback, most specialists spent their time talking about what is typical for kids with Down Syndrome. I felt like she was invisible. And you know what else? It made them seem less credible because I felt like they missed seeing her. To us, she’s far more than a child with Down Syndrome. Reducing her to the disability drove a barrier in communication.

Instead, speak of the child separate from the disability. I cringe writing this because I know I made mistakes in my early teaching career. I can think of many times when I started sentences, “Some kids with autism…” Perhaps I felt like the extra words showed my expertise. Perhaps the extra words came out naturally since my brain had the information stored in my “autism” folder. But the bottom line is that the sentence works much better to just say, “Some kids…” I wish that more professionals would keep things simple this way. And I am fully committed to this subtle change in my own dialogue with parents.

If you’ve read this far, thank you. You must be deeply committed to having great relationships with your special needs families. And families like mine need individuals like you in the community. Please share your thoughts in the comments below. I look forward to the ongoing dialogue!

Image credit: Eric Ward [CC BY-SA 2.0 (https://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

Jess Ledbetter

Dr. Jess Ledbetter teaches preschool students with developmental delays in a Title I school in Glendale, Arizona. She is a National Board Certified Teacher (ENS-ECYA), an Arizona Hope Street Group Teacher Fellow Alumni, and a Candidate Support Provider for teachers seeking their National Board Certification. She earned her doctorate in Educational Leadership and Innovation at ASU in 2016. Her mixed methods research used a Communities of Practice model as a strategy for early career special education teachers to collaborate with peers to increase their team leadership skills working with paraeducators in their individual classrooms. Dr. Ledbetter is guided by the belief that all teachers are leaders in their classrooms and possess the skills to be leaders within their schools, districts, communities, and greater context. She hopes you will contribute to the dialogue by leaving comments about your own experiences, opinions, and insights so that real-life stories from our schools can inform the policies that affect students, teachers, and their communities.