Updated: Jun 23, 2021
I am grateful for the experiences that make me a better advocate for my son. Recently, my own discomfort at a gym fitness class gave me a deeper understanding of what my son may experience in his general education classroom without proper supports.
I got a free 5-day pass to a local gym and decided I’d try a class called “Muscle.”
When the class before Muscle finished, people rushed the door and entered with a furry. Instantly, people began claiming their spots in the class. I stood there trying to figure out a spot that hadn’t been taken and how to claim it. As people moved with intention throughout the room, I stood frozen—too overwhelmed to move. I did not know what equipment was needed for the class, nor where to get it. I stood confused and embarrassment.
Then, I decided it was too much. I wasn’t fast enough. I did not know how to find the information that I needed to participate in the class.
As less and less space became available in the classroom, I knew I wasn’t going to be able to figure out what I needed to participate and with everybody moving so quickly to get the equipment they needed, there wasn’t anybody that would help me.
I shut down and without much thought, walked right out the door.
When I got to my car, the emotions from the experience brought tears to my eyes. I was disappointed in myself and I was disappointed that I didn’t get the opportunity to try the class. I thought about my son with Down syndrome that is included in his second-grade general education classroom.
I am humbled by the fact that although I am advocating for my son, I do not truly know what he experiences. As his mom, I am an expert on him and how to support him, but I don’t know what it is like to walk a day in his shoes and he is not yet able to articulate it for me. The best I can do is seek out information from other persons that have walked a similar path as my son. I read articles written by self-advocates so that I can better understand what my son experiences and how I can help him. But still, most days I can’t begin to fathom what it is like to be my son trying to navigate a world that moves at lightning speed.
I read articles written by self-advocates so that I can better understand what my son experiences and how I can help him. But still, most days I can’t begin to fathom what it is like to be my son trying to navigate a world that moves at lightning speed.
Today, my experience in a fitness class that overwhelmed me to tears, strengthened my ability to advocate for my son.
When I was in that class, everybody knew what was needed for the class and how to set up their station. Each student in the class was moving quickly because they were easily able to access the information needed (they knew it from experience). I, however, did not have the support that I needed to access the information so I completely shut-down and gave up. Had one person in the class been willing to help me get my station ready, I would have felt a sense of belonging and would have stayed to complete the class. I needed support to participate and feel like I belonged in the class.
When my son is not able to complete an activity at school, I first look at the supports and what tools my son is missing to be able to access the curriculum. Like my son, verbal or visual directions would have helped me to get the information I needed to participate. How awesome would visuals with all the equipment needed for the class posted around the room have been?
One of the more frustrating parts of my experience was that everybody else knew what they needed to do. I felt alone and embarrassed because I did not. I thought about how without the proper supports, my son will shut down by refusing to try what is being asked of him. He is not refusing to complete an activity because he doesn’t want to do it, rather, he does not have the information or support he needs to be successful.
I wanted to participate in the class, but I couldn’t. I know that often my son’s seemingly stubborn ways or lack of interest is him communicating that he needs additional support to participate. Without the ability to access an activity, there is no way to truly know what my son can accomplish.
I have always presumed my son’s competence, but this experience helped me to feel firsthand (for a few minutes) what it must be like for my son when he is not properly supported. He wants the same thing that we all want—the ability to participate and to feel a sense of belonging.
I will take this experience and use it to be a better advocate for my son. I will challenge myself to not only advocate for his inclusion but also to ensure that he is provided with all of the supports he needs in order to fully access the curriculum in the classroom and all school activities. Being included without the needed supports is simply physical proximity, it does not create a sense of belonging. Just being there is not inclusion.
Jessica is a mom to two boys. Her eldest son has a contagious smile, the best sense of humor and also happens to have Down syndrome. Jessica hopes to change outdated perceptions by sharing a positive and honest perspective about raising a child with Down syndrome. Jessica is passionate about the many benefits of inclusive education and writes the blog 321 Inclusion to share her family’s experiences.