Caring for a chronically ill child impacts the lives of parents in many ways. Some are transparently obvious but most are invisible. Kevin Timpe is a father who knows first hand what it means to be deeply involved in family life and hold down a demanding job while also advocating full time for his son Jameson. Several months back, a major move highlighted the physical, emotional and psychological toll of their son’s condition and their quest for optimal medical and educational provision.
Earlier, I wrote about the frustration of having to ‘quantify’ our son in a way that getting him medical and therapy services requires:
It’s hard to quantify our son in the way we’re required to. It’s hard to quantify our sorrow, the emotional toll, the years of uncertainty when we had a diagnosis but no prognosis. I think back to earlier inventories and tests, among them an IQ test, the results of which we never opened. We didn’t want a number. I can’t reduce what it’s like to be the parent of a multiply-disabled child to the sum of numbers on a form or a test — but apparently that’s what I’m supposed to do.
That previous post was primarily about the emotional toll that the relevant checkboxes and forms-in-triplicate causes, about the demoralizing effects of navigating the services he needs.
Since that post, we’ve moved to a different state. In addition to all the usual things that a move across county means (new house, new job, new friends, new schools, etc.), a move with a child with disabilities or significant medical needs is exponentially more complicated.
THE EMOTIONAL TOIL OF CAREGIVING
A new school means new forms — not just enrollment forms and vaccination records, but more of the forms and quantification that I talked about before — and thus more emotional toil.
The move means new doctors, and having to educate them on our son’s condition and its implications. Since he’s one of only about 60 documented individuals in the world with 2p15-16.1 Microdeletion Syndrome, we’ve yet to meet a medical professional that was already familiar with his condition. In these meetings, we’re the parents and the experts and the teachers, so once again we have to recount all that he can and can’t do, his struggles and challenges, and the ways that our lives are shaped in so many details by his condition.
The move means new therapists—getting referrals and doing initial screenings and interviews before we pick a particular provider. And once we do make our decisions, we’re in for yet even more forms — more paperwork to get referrals to specialists we hope we’ll never need.
The past few weeks have brought a different demoralizing frustration. In our previous state, our son got much of his therapy and medical care through Medicaid. While Medicaid is a federal program, it’s administered by the states, so moving to a new state requires learning a new state Medicaid system. Despite having learned how to pressure school districts to follow state and federal education law that they’d prefer to ignore, I’ve been up against a steep new learning curve.
FRUSTRATION AND EXHAUSTION
Whereas our previous state had one bureaucracy that we had to navigate for health and therapy issues, our new state has three — and they’re separate. I’ve yet to find someone that works in one that understands the other bureaucracies. More than once, I’ve had the thought that this is done on purpose to make navigating the system harder, thereby making it easier for the state to avoid providing therapy and medical services to children who need them.
In the last two weeks, I’ve spent over nineteen hours on the phone trying to figure out how to get our son the services he received prior to our move. Nineteen hours. I’ve talked to about two dozen individuals, left voicemails that still haven’t been returned, been forwarded from one person to another only to have that person say that I need to talk to someone else, and then been transferred back to the first person I spoke with (That’s happened twice.).
THE HIDDEN LABOR OF DISABILITY
Every phone call is emotionally draining. Every minute spent doing this is a minute that I have to work after the kids are asleep to try and stay on top of my job. (My ‘relaxation’ tonight after I spent two hours working and after my kids went to bed is writing this blog post.) However, in many ways, I’m very fortunate. Unlike many others, I have a job flexible enough to even make this possible. Others would have to take sick leave or even unpaid time off to make these calls.
I was recently at an academic conference, participating in a session focused on disability. One of my fellow presenters, Teresa Blankmeyer Burke, is deaf. In addition to all the work that I had to do to prepare for our presentation at the conference, she had to arrange for American Sign Language (ASL) interpreters — and make sure that the interpreters would be able to translate the technical vocabulary our discipline uses. Also, she had to make sure that the rest of us involved knew how to work with those interpreters so our session was accessible. (She’s co-directing a project that involves inventing ASL signs for much of that vocabulary as well. How cool is that? She’s adding new words to a language, although the fact that she has to add words describing disability to a language is unfortunate.)
The point here is that by virtue of her disability, there is a lot more work that she needs to do in order to participate in the conference. Jackie Leach Scully refers to this as “the hidden labor of disability.” In a blog post on the hidden labor of disability, my fellow presenter at the conference, Teresa, writes:
“I recognize that all academics make choices that determine how our time is used, but my point here is about the system advantage accrued to non-disabled academics. These people are advantaged by current systems and structures in academia — this impacts those of us who are disadvantaged because we are measured on their yardstick of time consumption, not ours.”
What she rightly notes here about disabled academics is also true of disabled individuals in general — and also true of people with significant medical needs, as well as true of parents of children with disabilities or high emotional needs. Being such an individual not only requires significant time, it requires time spent doing tasks and battling systems that aren’t helpful, all of which is emotionally draining and frustrating.
THERE’S ONLY SO MUCH TIME AND ENERGY
So here’s a request from a frazzled parent. Please try and understand this hidden labor. Please be sensitive to it, both in the workplace and with your friends.
This past Friday night, in an effort to be welcoming to us, a new colleague invited my family to his home. I did appreciate that, but after all the hidden labor that this past week involved, I just didn’t have it in me. It’s never easy being at someone else’s house with three young children, especially if those individuals don’t have small children themselves.
Then add in the various ways that having our son in a new environment involves extra work, extra caution, extra energy.
So we turned down the colleague’s invitation.
I think my new colleague understood. Given that he’s a dean at my college and exercises a supervisory role over me, I sure hope he does.
I would rather not have needed to decline, in part because I think he could easily be a good friend — and I want to help my wife meet more people here in our new state — but there’s only so much time and so much energy.
UNDERSTANDING AND EMPATHY
If you’re a person who has to do such hidden labor and aren’t familiar with the phrase, you now have a name for what you’ve been experiencing. Naming it and recognizing it can be useful. It helps explain, for instance, why some of us don’t have the energy to accept social invitations on Friday nights. Recognizing it can help alleviate the guilt.
On the other hand, if you’re a person who doesn’t have to do such hidden labor, pay attention to those around you that might have to do so. They may need to spend their Saturday morning filling out forms for therapists rather than having coffee. They may be too tired from being up much of the night caring for a child with narcolepsy to join you for yoga at the new place down the street. They may not be able to go to a movie with you because they need to continue working on inventing the vocabulary they need for their jobs. They may find it hard to do ‘small talk’ with all the concerns running through their head. They may turn down your social invitation, yet again, because they’re simply spent.
Let me end with a request. Please, do your best to understand, to be empathetic. Do your best to offer to help with some of that work if you can. The hidden labor is real and exhausting, despite being hidden. Pray for them. Invite them to nap with you. Understand if they cancel plans at the last minute. Empty their dishwasher or fold their laundry while they’re on the phone. Or simply give them a big hug and don’t expect any more out of them.
First published in January, 2017 at clairecrisp.com. Published with permission.
President of a 22 Advocacy
Kevin and his wife live in Grand Rapids, MI and have three children. Their oldest has multiple disabilities and is one of approximately 60 diagnosed individuals with 2p15-16.1 Microdeletion Syndrome worldwide. Kevin is the president of a disability advocacy company, 22 Advocacy, which focuses primarily on advocating for children with disabilities in public schools. When not parenting or advocating for children with disabilities, Kevin holds the William H. Jellema Chair in Christian Philosophy at Calvin College. He’s the author or editor of eight books and has written over fifty articles or book chapters. In the past few years, he’s begun writing on philosophical issues related to disability.
You can find Kevin on Twitter at the_Timpest and at 22Advocacy, a 501c3 non-profit specializing in disability advocacy, and also at KevinTimpe.com.
When Chronic Illness is a Member of the Family
The keys to parenting when chronic illness is a member of the family are prayer; humor; flexibility; being intentional kind; acknowledging loss, fear, and other uncomfortable emotions; embracing each family member’s God-given worth; and loving one another deeply from the heart.