“We are so blessed to have her in our lives.”
“It’s a privilege to care for her.”
“I wouldn’t trade her for the world.”
“I wouldn’t change a thing.”
When talking about their lives and their children, special needs parents often find themselves recycling comforting phrases like the ones above. At first glance, these remarks seem entirely innocuous. But lately, I’ve been thinking about the kind of perception they create for other people, as well as the implications they carry for our community.
I believe special needs parents fall back on these common sayings for very good reason. Our reality is messy, confusing, and not something we always want to share. Also, very few people outside our world are prepared to hear the unedited version of our lives. They want so badly for our struggles to have purpose, for us to be at peace with our situation, and for everyone to fit into the reassuring narrative these phrases create.
The narrative goes something like this: Special needs parenting is a difficult but ultimately rewarding experience—a gift from the universe sent to teach us valuable lessons about life's true meaning.
If only it were that simple.
Sometimes the narrative does feel true to me. But occasionally—especially on my darker days—it doesn’t. On those days I can barely get by, let alone find meaning or feel blessed because of my child’s disabilities. Yet, I still feel societal pressure to conform to this particular view of things.
The more time I spend on social media or chatting with people I don’t know well, the more pressure I feel to bend my family’s story to fit what everyone else expects it to be. Not only is this limiting and isolating, but there’s another downside too. I end up censoring myself. Points of view that don’t conform to the dominant narrative about special needs parenting feel vaguely off limits to me. I find myself suppressing certain opinions and truths because I don’t want to shock anyone or to veer off brand.
If we take the phrases at the beginning of this post as examples, I can show you what I mean.
“We are so blessed to have her in our lives.”
“It’s a privilege to care for her.”
The blessings/privilege piece of the dominant narrative is one you can’t escape in our world. On its flipside, is the taboo topic of “burdens.” It’s my personal belief that there is nothing wrong with admitting to the heavy load we all carry. The problem comes when we don’t separate the people from the caregiving. My daughter, special needs children, anyone who requires care—these are living, breathing human beings who deserve our utmost respect and dignity. Loving them is the blessing and privilege. But caring for them? That’s another story.
Every day I clothe, diaper, feed, and transport a thirty-pound child who is legally blind, cannot use her hands, is incapable of speech, and unable to take a single step on her own. I love her beyond measure, but none of this is easy. It’s not a privilege or a blessing. It’s work. It’s work I signed up for when I became a parent, but that doesn’t change the fact that it’s completely consuming and utterly relentless.
When we talk vaguely about blessings and privileges, it erases all of the nearly invisible labor that caregivers provide. It makes it seem as though we all survive on silver linings and are paid in life lessons. It gives the impression that we already have everything we need in order to do our job.
Unfortunately, we don’t.
Special needs parents need every ounce of help we can get. Caregiving in America—a country with spotty, meager support networks—is a burden. It’s emotionally, physically, and financially exhausting. My own family is a good example. In our state, we can’t even get on the nine-year waitlist for in-home help for another year. Our insurance does not cover respite care, stair lifts, wheelchair ramps, or 89% of the $15,000 eye-gaze device my daughter needs in order to communicate. The only government-provided service we can access without a waitlist is special education preschool. My daughter attends just twelve hours a week during the school year. The rest of the time my husband and I arrange and pay for her care ourselves.
When parents talk in ways that erase all of this, or downplay it, we do everyone—and most especially ourselves—a disservice. If we want more help from the government, insurance companies, and employers, we cannot simply circulate the same phrases about blessings and silver linings. We have to tell the truth. We have to be open about our burdens and responsibilities.
When we talk only in positives, we also risk making other special needs parents feel unworthy, embarrassed, or isolated. There is a startling disconnect between the public personas special needs parents often feel they have to adopt—hard-working caregivers who experience rough times but are ultimately at peace with their lives and full of hope for the future—and what these same parents express to each other in private. These are people who worry about things like their child’s mortality, massive medical debt, nervous breakdowns, and the utter exhaustion that comes with juggling a job and a child with all-consuming needs. These caregivers need our encouragement, advocacy, and compassion—not pressure to conform to an impossibly-high standard in a world that denies them the proper resources and support.
“I wouldn’t change a thing.”
“I wouldn’t trade my child for the world.”
This piece of the dominant narrative also circulates widely in our world. Special needs parents aren’t supposed to want to change their children. We are expected to love our sons and daughters just as they are. But, again, I’m going to be brutally honest here. I absolutely would change my child. If I could take away her disease, I would do it in a heartbeat. I would trade the version of her who suffers and struggles every day for the one who has the freedom of movement and expression most other children take for granted. It’s my suspicion that many other parents feel the same. But we’re too terrified to say this out loud. We have been taught to be embarrassed and ashamed of this way of thinking.
There is a certain, very vocal contingent of the population who feels passionately about this topic. These are people who are neurodiverse or who live with disabilities and are proud of their identities. They feel very strongly that there is nothing about them that needs to be “fixed.” I applaud them for this. It’s wonderful to feel that kind of pride and confidence in yourself. The problem comes when this point of view extends to everyone else and eclipses the needs and opinions of others.
Many people who live with disabilities are unable to communicate effectively. They live with daily pain, can’t move independently, and often need things like feeding tubes, oxygen tanks, and anti-seizure medications to make it through the day. When we allow the dominant narrative to continue unchecked, we end up ignoring this group of people. They don’t simply need to be celebrated for who they are. They need things to be done. We should all be raising funds for cures, advocating for better health care coverage, and pushing research forward as quickly as possibly.
If we are uncomfortable admitting that we would like to “change” people, it’s because we are again mixing up two very different things. Wanting to improve someone’s condition and accepting them for who they are aren’t mutually exclusive. We can do both. We can love someone, embracing all of their differences, while still admitting that the world would be a better place without their disabilities and pain.
In the end, the dominant narrative about special needs parenting isn’t terrible in and of itself. The damage only comes when recycled phrases replace other ways of thinking, force us to censor ourselves, or cause us to hide our true feelings about our lives and our struggles. We should all have the right to speak openly, acknowledge the bad along with the good, and reveal our true, messy selves without fear or judgement.
You might not agree with my opinions in today’s post, and that’s all right. Actually, it’s more than all right. It’s healthy for multiple points of view to co-exist. This is why I’m not asking you to share my views.
What I’m asking, instead, is this: The next time you find yourself about to recycle a common, comforting phrase or to tell a story about your life that mirrors everyone else’s, stop for a moment. Ask yourself why you’re doing it and what implications it has for others in your community. If it still feels true to you and you want to say it, then by all means—go ahead and say it.
But if it doesn’t feel quite right, then that’s okay too. You’re allowed your own truth. What you do with that truth is also up to you. You can put it out there in the world, keep it to yourself, or share it with someone open to hearing it. And if you’re not sure who that someone is, here’s a suggestion.
You can always start with me.
Are there common narratives or stock phrases that bother you in particular? Why? What do you think people should say instead?
Let me know in the comments below.