A month into my son’s second grade school year I listened in frustrated disbelief as both his general education teacher and special education teacher shared with my husband and I all the concerns they had about our son August’s behavior. They painted a picture of a disrespectful, unruly, violent student. A boy I was not familiar with.
That conversation was followed up with a long string of emails, phone calls and meetings to address August’s behavior and needed support. I very clearly expressed how out of character his extreme behaviors were. I asked about a plan for support. I felt as though we went in circles, his needs going unaddressed. At one point it seemed as though we were sending him to school to practice these out of character and destructive behaviors and so a week before Thanksgiving break I told his IEP team that he would not be going to school until they were able to get a consistent plan in place to address the antecedent to the behaviors, and implement the necessary supports so he could participate in his school day with the rest of his peers.
August was out of the classroom for nine weeks. During that time it became clear that the damage done to him those first few months in his second grade class would take an effort not everyone was willing to give in order to make repairs. So we made the decision to pull him from his class. Creating a plan to move forward meant a new teacher. Just before Christmas break, we sat across the table from a different second grade teacher. A teacher unfamiliar with real breathing people with Down syndrome. A teacher who, through folded arms and cold eyes, told us in so many ways, she had no idea how to work with a child like August. She sat across from us and rejected our son because he had Down syndrome.
Weeks after making the decision to pull August from the given school environment he needed to be on campus for a session with his speech therapist. As he approached the steps to the school he stopped dead in his tracks and said, “they don’t want me here.”
Let me be clear here, all of the aforementioned conversations and meetings happened without August present. His dad nor I had never talked about our frustrations with the school in front of our son. We tried to protect him from the behind the scenes as best we could. No one ever said those words to him. The worst thing about it is they didn’t have to. During those first days of his second grade year August felt rejected. We don’t know in exactly what ways. Maybe it was how his peers avoided conversations with him because his communication is a little different than theirs. Maybe it was because of how difficult the tasks expected of him were and he needed help but didn’t know how to ask. Maybe it was because of the ways he would need to bend, flex and change in order to fit within a school system, prohibiting him from showing up as he was. Whatever the reason he felt a lack of belonging, his behavior was a direct result: he would rather be rejected because of the way he behaved than for who he was as a person with Down syndrome.
When I think about August’s first few months in second grade I’m not frustrated so much with a teacher or students as I am with a system functioning in a world where the worth and value of a person with Down syndrome is constantly in question. A world where it is acceptable and even expected for my son to walk into a space needing to work 10 times as hard to be seen as half as much, a world that doesn’t know people with Down syndrome and is therefore unrelenting in the ways it excludes, segregates and others.
You see, I think if every person in August’s 2nd grade class had access to real, breathing people with Down syndrome, to the stories of those who know and love a person with Down syndrome, they would have been able to see humanity in August just as he was. They would have known that just like them, people with Down syndrome want to know they belong. They would have been quick to embrace him rather than intuitively reject him.
Last week a dear friend of mine who I do not see nearly as often as I’d like sent me a text message about a book she was reading by Cole Arthur Riley called This Here Flesh and she shared this quote, “We cannot help but entwine our concept of dignity with how much a person can do. The sick, the elderly, the disabled, the neurodivergent, my sweet cousin on the autism spectrum — we tend to assign a lesser social value to those whose ‘doing’ cannot be enslaved into a given output. We should look to them as sacred guides out of the bondage of productivity.”
My friend went on to tell me this truth was recognizable to her because she knows August (and Macy). She said her heart and life will be different because she knows my kids with Down syndrome and can see their worth fully. She went on to say this truth would be known by her son, and his sons and daughters, etc.
There is power in the knowing. There is narrative-shifting strength in a connection to a real breathing person with Down syndrome.
The truth is we live in a society obsessed with connecting our worth as humans to what we can do. We look to the doers to guide us into doing more, equating our value to our productivity. The lies are dressed up as opportunities constantly whispering to us, “be better, do more, climb higher, achieve, succeed, produce!” We get lost in this hustle, and shape shift our way out of facing the stark reality that the lies of our worth being found in our productivity has untethered us and we are flailing, feeling miserable and alone. Soon we cannot recognize ourselves in this constant equating of our own value and worth.
The narrative shift needed to happen for people with Down syndrome, for them to be seen as fully human, worthy of belonging, and treated with value and dignity, is not just for people with Down syndrome and those who love them. This narrative shift is an invitation for everyone who has ever felt that they are not enough. It’s an invitation to make space in our lives for people with Down syndrome and their stories, to help guide us along this one and only sacred, messy and glorious life.
When we tell the stories of people with Down syndrome we tell the human story: a story with a desire for belonging at its core.
I believe this story of belonging is the story the students in Augie’s class and the teacher who rejected him are longing for. And so we will keep on telling it. We will commit ourselves to telling the stories and shouting the worth of the 6 billion people in the world who have Down syndrome and the billions more of those who love them. And we invite you to join us!