The world of special needs parenting is full of paradoxes. One of the most unexpected is how we and our children can both be highly visible and completely overlooked by the rest of the world. Because of our children’s differences, we often can’t pass through the medical complex, school system or, sometimes, even public spaces unnoticed. Yet, at the same time, there are so many ways in which our children are left out of normal life and we caregivers can slip from view.
It took two months, three weeks, and six days for me to become invisible. This is the length of time between my daughter’s first serious diagnosis and the last day I spent at my job. After less than three months, I gave up a position I loved in higher education to focus full-time on JJ and to juggle that impossible combination of complex medical needs, multiple therapies, and a global pandemic.
In one fell swoop, I went from someone with a respected, clearly defined role to someone with a high-stress, unpaid, round-the-clock job. Like many parents who have dropped out of the workforce, I’m now sometimes overlooked by the larger world. But this isn’t your run-of-the-mill case of stay-at-home-mom invisibility. It’s much deeper and more complicated than that. I now find myself in a position of medical advocate and protector, doing important, sometimes life-saving work for my daughter, but it often feels like the world in which I operate sees me only as a special needs mother. I’m not a real person with my own particular strengths, experiences, wants, or needs.
I imagine we all have our own examples of this type of invisibility. For me, I feel it the most when people don’t seem to care who I am. I cringe a little every time I receive a phone call that begins with, “Is this the parent or guardian of JJ?” My first thought is always, You didn’t even bother to look up my name.Because of the number of medical issues and doctor visits I juggle, I get calls like this multiple times a week, every week. And this problem isn’t limited to the phone. To many of of JJ’s doctors, nurses, and medical professionals, I’m simply “Mom.” One of her therapists even begins every email he sends to me with, “Hey there!”
I don’t mean to be disrespectful. These are kind, busy people who have chosen professions in which they help people tremendously. I admire them all greatly. But their attention is often focused solely on the child they are trying to help. Everyone else around that child simply becomes “generic caregiver.” Sometimes I feel like a nameless extra in a play starring my daughter. Female caregiver enters stage left.
It feels selfish to complain about this when my daughter deals with much more serious issues on a daily, if not hourly, basis. But this type of faceless, nameless invisibility wears on you—especially when you have sacrificed your career, time, sleep, and money so you can do right by your child. The world contains a vast network of unpaid, hard-working, invisible caregivers like me. Often, they aren’t in the workforce, don’t hold a position of power or authority, and don’t have adequate financial or emotional support. This is such a deeply complicated, pervasive problem that I’m not sure how to go about fixing it, if it even can be fixed. But I do know one thing: I wouldn’t mind if someone called me Claire once in a while.
Like us, our children deal with invisibility all the time. But while our erasure can be painful, theirs is often heart-breaking. The world simply isn’t built for them. I hurt the most when I see JJ erased by the little things in her life. The shopping cart she can’t fit into because her shoe inserts are too big. The swing at the playground that doesn’t hold her up properly. The neighbor kid who zips past her on his bike while she struggles to walk. These are the moments that stab me in the heart. We can all do our best, but no one can bend the entire world to fit every single person. Our children are different, which means that at some point—often at many points—they will be left out or left behind. I choose to deal with this by focusing on all the ways in which I can make the world see and accommodate JJ, rather than on all the ways in which I can’t. It would drive me to insanity otherwise.
There is a particularly painful contrast between JJ’s invisible, unmet needs and the ways in which her physical differences and disabilities make her stand out from the crowd. JJ wears large plastic shoe inserts and braces on her legs to help her walk. She used to wear a helmet to protect her head from falls. She sports a brace on her left arm to discourage her from mouthing her hand and, though she is four, still travels most places in a special adaptive stroller. The cumulative effect is that we often can’t go unnoticed. People in the checkout line at Target or, more likely, the lobby of a medical building often do a double take when they see her.
My guess is that they are not only struck by JJ’s various pieces of medical equipment. It’s also impossible not to notice the girl underneath. My daughter makes her presence known wherever she goes. Other parents of non-verbal children know that non-verbal almost never means silent. JJ has a repertoire of happy squeals, pouty moans, excited bellows, a few garbled words, and no volume switch. She also has trouble controlling her movements, so her head is often swiveling, her arms flailing, and her hands wringing. When she is upset, she has dramatic breath holding episodes (often mistaken for seizures) that include full-body collapses, eye rolling, and jerking limbs. I have no way of knowing what goes through people’s minds as they watch and listen to my daughter, but one thing is probably clear. Something about her is very different.
Every once in a while, I can’t help comparing my high-profile outings with JJ to the times when I take my typically developing seven-year-old out and about. RoRo and I can spend an entire hour in the grocery store without anyone even glancing our way. It feels so refreshing because it can be tiring to operate in the spotlight all the time. In the end, the visibility itself isn’t the problem, though. It’s the fact that we don’t get to choose or control it.
There is another type of special needs (in)visibility that can be particularly painful and difficult to navigate. Some parents, families, and children experience suffering so distressing that the rest of the world turns away from it because no one can bear to watch. Yet, there is nothing these people deserve more than to be seen. I became aware of this terrible paradox while listening to the stories of other parents and families in the Rett Syndrome community. I was attending an online patient-focused meeting between our community and the Federal Drug Administration—a chance for people to share experiences about living with the disease and to explain the severity of some of its symptoms. I was excited to add my voice to those of other parents and caregivers but was completely unprepared for how difficult the stories were going to be.
Early in the meeting, we watched a pre-recorded video in which a mother told the story of her young son’s death from Rett Syndrome. The boy’s symptoms were acute, his suffering coming through in his mother’s eyes and words. Her pain was so clear, the story so difficult to listen to, that it didn’t take long for tears to begin streaming down my face. My hand flew to my mouth, covering a silent scream, and my fingers hovered over my computer mouse. I wanted so badly to press mute, to switch to another browser, to stop her story. But then I hesitated. I thought about how much I hate it when people turn away from our family’s pain, yet here I was about to do it to someone else—and to a mother from my community, no less. In that moment, I knew the worst thing I could do would be to erase her and her son. They deserved to be seen and to have their story told. They deserved to be visible.
It’s human to turn away from pain. Kind-hearted, well-meaning people do it all the time. Before JJ’s diagnosis, I did it too. Sometimes, I still do. But I’m trying to do better. So, I decided to give the woman my full attention. I listened to her and learned about her son.
When JJ’s symptoms began, our family entered a world where vision is distorted. Sometimes we are seen. Sometimes we are invisible. But there is one great comfort: We know that we are not alone. There are other families out there whose children live with disabilities and differences. There are other parents who will listen to my story, and I will listen to theirs. All of us move in and out of the larger world, and we can’t always change how that world sees us. But we aren’t completely helpless. There’s something we can do to help resolve the paradoxes in our lives.
We can choose to see each other.
Are there times when you have felt like you or your child was highly visible? When you have felt invisible?