Brian Herndon, PhD., is Associate Professor of Teacher Education at John Brown University. He also holds a Graduate Certificate in Leadership in Special and Inclusive Education Program from
The University of Kansas School of Education.
I’m a numbers guy. I love numbers. I did my dissertation as a quantitative study because the last thing in the world I wanted to do was to transcribe countless hours of interviews. At the time, there was nothing about that process that appealed to me.
….Numbers tell a story.
Let me tell you mine:
46 – the number of trips I’ve taken around the sun
17 – the number of years I’ve been joined on those trips with my wife, Jenny
4 – the number of children we have
1 – the number of children we have with disabilities
5 – the number of degrees/certificates I have
21 – the number of years I have been an educator
6 – the number of years I served as a school administrator
3 – the number of years I’ve served as an educational advocate for families of children with disabilities
100s – the number of times I’ve served as the Local Educational Agency Representative (LEA) for Individualized Education Program (IEP) meetings
0 – the number of times I have felt comfortable dropping my son with Down syndrome off at school
Those are some numbers! Yet, there is something missing. There is a narrative behind those numbers which doesn’t emerge by examining the numbers, alone.
Lived experience has a way of showing the importance of the narrative behind the numbers. As I examine those numbers, I see one that really stands out to me. It’s not the number of degrees I have, though that’s impressive. It’s not the number of times I have served as an LEA in IEP meetings, though that’s also impressive.
It’s the number that doesn’t hold a lot of value: 0. You see, that number, above all the others listed in my story, holds a tremendous amount of value to me. I have a son with Down syndrome. His name is Nate. He is a very bright, articulate boy with 10 years under his belt. He reads, writes, and understands numbers. He’s not on grade level, but he is (mostly) educated in the general education classroom. He has behavior issues from time to time, and this is the thing that causes me the greatest fear.
Here is a bit of the narrative that gives value to the 0:
I’m a professor at the local university in our town, and my son’s school is on my way to work, so I am privileged to get to take my son to school every day. Every day, this is what our drive sounds like:
Me: “Nate, tell me what your day is going to look like today.”
Nate: “It’s going to be good.”
Me: “What does ‘good’ look like?”
Nate: “Listening to my teachers. Doing the teacher’s work. Following directions. Being responsible.”
Me: “Very good. I hope it goes well for you today. How many smiley faces do you think you will get on your chart?”
Nate: “All of them!”
Me: “Good deal, buddy! I hope that happens!”
As I ‘round the corner in my ’02 Outback, I see Nate’s school, peeking out from behind the trees, as if to taunt me in a childhood game. My stomach tightens. I become aware of my breathing. “Just breathe,” I tell myself. “It will be okay,” I whisper reassuringly. “He’s had several good days in a row. So, today should be no different,” I say to myself, trying to ease the anxiety building in my chest. I try to relax as I pull into the center turn lane, clicking on my left blinker.
We make the turn into the school’s driveway.
“Nate, take your buckles off and get your backpack on,” I tell my son. We roll toward the drop off lane. “Alright, get out. Have a great day! Be good!!” I say it almost as if to convince myself that it’s possible as much as I am telling it to him.
My experience and my education have taught me that all children with disabilities should be educated in the Least Restrictive Environment, unless the nature and severity of the disability is such that the child cannot be educated with his or her nondisabled peers, even with the use of supplementary aids and services. IDEA 2004 does not provide definitions for this statement beyond what you have just read. IDEA 2004 does state that children whose behavior is severe enough can be removed from the general education environment.
“Education is the most powerful weapon you can use to change the world.”
My 46 trips around the sun have taught me that not all school districts view special education law through the same lens. There is varied interpretation about statements in the law, specifically when it pertains to educating children with disabilities alongside children without disabilities. We have worked very hard to make sure that our son has equal access to the same things that all children have access to in school. We have worked very hard to ensure that our son is educated alongside his peers without disabilities.
It has not been an easy journey, and it has not been without great sacrifice. I believe that the mild bouts of anxiety I experience nearly every day are related to the fact that I know all of our work on behalf of my son could come to a halt, should the district determine that my child’s behavior is too disruptive for the general education classroom.
My education through the University of Kansas School of Education has taught me that when we educate children with disabilities alongside children without disabilities, we normalize disability. We help those without disabilities view those with disabilities as experiencing something that is a normal part of the human journey. Children with and without disabilities become adults with and without disabilities.
When disability is normalized and children with disabilities have been part of the regular education setting for most of their educational career, then being an adult with a disability is not so disabling. It is our hope and dream that our son, Nate, will be a valued and valuable member of society, contributing to the world around him in a myriad of ways. My wife and I understand that the likelihood of this happening diminishes greatly if he ends up in a self-contained classroom. So, even though our son is only in 4th grade, we know how incredibly important it is that we are building a solid foundation of inclusion for him.
“Inclusion is not a strategy to help people fit into the systems and structures which exist in our societies; it is about transforming those systems to make it better for everyone. Inclusion is about creating a better world for everyone.”
Diane Richler, past president, Inclusion International
Returning back to that “0” in my story, I know that I will never feel comfortable dropping off Nate at school or waiting in the car rider line to pick him up. I have three other typically developing children, so I know the feeling that other parents experience when they drop off or pick up their children at school.
However, the feeling is different with Nate. If I never feel that way dropping off or picking up Nate, it will be okay. It is minor in comparison. The fight for my son is real, and I will not back down until he has true equality under the law. Even if it means experiencing a bit of pained anxiety in my chest every day.
I write this post because I believe it is important for practitioners and researchers, alike, to understand the narrative of the “special needs parent.” I’m a member of a few Facebook pages for parents of children with Down syndrome. We don’t experience life in the same way as other parents, and this includes the simple things like dropping off and picking up our children from school. The anxiety we experience when we see our child with their behavior improvement plan sheet in their hand as they make their way to the car rider lane runs deep, and it extends far beyond the drive home. We want to feel “normal,” whatever that may be. Right now, for us, “normal” is associated with anxiety and pain.
I suggest that educational practitioners and researchers note this, make the necessary accommodations for us, and include us in research on this matter. My hope is that together as researchers, practitioners, and parents, we can create a world where disability is not so disabling and where children who experience life differently will be included as a regular part of society. Until then, we “special needs parents” will continue to fight, both silently and vocally, yet always with the pains of anxiety and stress coursing through our veins.
Dr. Herndon is Director of the Missouri Center for Inclusive Education.
“We envision a world where school systems are designed to accommodate the needs of all children (Kozleski, Thorius, & Smith, 2014; Kozleski, Gibson, & Hynds, 2012; Bryk, Gomez, Grunow, & LeMahieu, 2015). Schools have, in the past, segregated children, specifically children from historically marginalized groups of people (Theoharis, 2007), and it is our hope that we change the practice of segregating children, specifically children with disabilities. Children with disabilities deserve to be educated alongside their typically developing peers, and we will always work toward that end.”
Bryk, A.S., Gomez, L.M., Grunow, A. & LeMahieu, P.G. (2015). See the system that produces the current outcomes. In Learning to improve: How America’s schools can get better at getting better (pp. 57-85). Cambridge, MA: Harvard Education Press.
Kingston, M., Richards, C., Blank, R., Stonemeier, J., Trader, B., & East B. (2014). Leading education reform initiatives: How SWIFT (Schoolwide Integrated Framework for Transformation) coordinates and enhances impact. Issue brief #2. National Center on Schoolwide Inclusive School Reform: The SWIFT Center, 1-14.
Kozleski, E.B., Thorius, K.K., & Smith, A. (2014). Theorizing systemic reform in urban schools. Ability, equity, and culture: Sustaining inclusive urban education reform, (pp. 11-31). New York, NY: Teachers College Press.
Kozleski, E.B., Gibson, D., & Hynds, A. (2012). Changing complex educational systems: A framework for collaborative social justice leadership.
In Uhl-Bien, M. & Ospina, S. (Eds.), Advancing relational leadership research: A dialogue among perspectives (pp. 263-286). Charlotte, NC: Information Age Publishing.