One morning at breakfast, my family discusses exercise and the out-of-doors. Moose says, “We don’t get outside as much as we should. The reason why is sitting at this table, and it’s not me, and it’s not Dad, so it must be…” His finger points at me.
I keep chewing my egg and toast, merely raising my eyebrows to show I’d heard him. This hits upon a nagging concern of mine, though: that I am challenged to support Moose’s need to exercise—what I interpret as Dabrowski’s psychomotor overexcitability.
“Be nice to your mother, Moose,” Gregg says.
It is true. I recall the progress reports of my youth, which I’d come upon in a box the summer before last. A few phy ed teachers had clearly checked out on their careers or confused me with some other student and awarded me a B, even an A. Others had my number; comments such as “Ann needs prodding to participate” or C’s graced my report cards. Prodding. That was actually kind.
“I love to hike, you know,” I finally say. “And dance. I like to dance.”
Moose rolls his eyes. “You never want to kick the soccer ball or throw the football with me.”
“No, I know.” There’s something inherently humiliating about your nine-year-old nutmegging you and then giving you pointers on how to avoid it the next time, but failing to do so. And on this one, I choose avoidance over improvement.
A candy bar for your thoughts…
It’s not only a matter of avoidance. The last time I shot goals on Moose was five days before I was scheduled to have abdominal surgery. I kicked goal after goal as my body protested the effort it took to send the ball sailing toward the net—or, in a few of my more ill-aimed shots, into the neighbor’s hostas.
This fall has been taken up with surgery and recovery, followed by a new medication, followed by intense side effects and lingering problems caused by the drug. Moose has been compassionate, offering me my favorite peanut M&M’s from his Halloween pumpkin as a prize when I finish another blood draw, or Kleenexes and more candy when I cry from frustration. I’m pretty sure I’ve eaten most of his Snickers bars, and I know I ate all of his Almond Joys.
I’m in good company. According to National Invisible Chronic Illness Awareness Week, nearly 1 in 2 Americans has a chronic condition. The majority are invisible. These illnesses can include, but are not limited to: arthritis, asthma, brain injury, chronic fatigue syndrome, diabetes, endometriosis, epilepsy, fibromyalgia, lupus, mental illness, migraine, multiple sclerosis, and chronic pain of all types. People of all ages can be affected. Millions of us are parents. Maybe you’re one of them.
I parent with three invisible chronic conditions. My child needs to go, go, go when my body is often telling me to sit, sit, sit. Fortunately, when he’s not wanting to run, he’s a pretty quiet boy—and I’m all about board games and books.
Let’s get something straight: Parenting any child under any circumstances has its rough moments.
But parenting with a chronic illness can add to the roughness of the moments. Parenting a gifted or 2e child, with their intensities, challenges, and need for advocacy, can be an exercise in frustration when you’re not feeling well. And when you don’t look sick (because, if you’re like me, your motto is “I may feel rotten, but dammit, I’m going to look great”), you may find that other parents or teachers, unaware of your condition, are surprised when you can’t perform at the level they expect of you. After all, aren’t the parents of gifted kids often gifted themselves—high performers in their own right?
Yeah, well, not always.
The perpetual learning curve
There are a few things I’ve learned to do—or not do—as somebody who parents a PG child while dealing with invisible chronic conditions of my own.
I’ve learned to say no. Just… no. “I’m sorry, not right now,” or “Maybe next time,” or “I’m not able to commit to that” are all responses I’ve used to decline requests from teachers and other parents. (And then there was the time the manager of Moose’s soccer team got a terse “No, I really don’t want to do that today, so I’m going home” from me. Bad day.) But I’ve gotten really good at saying simply, “I’m sorry, but no.” No reason required.
I want to say yes. I want to volunteer in the classroom. But appointments eat into my time off from work, and at the end of the workday, I’m spent. So I look for smaller ways to contribute: one-time opportunities to volunteer at school rather than weekly commitments, projects I can complete at home on my own schedule, or ways I can donate needed items to the classroom.
I’ve learned to advocate quietly. This is my style anyway, but I’ve learned to build relationships over time and then ask for accommodations for Moose, nearly always conversing with teachers through email rather than contacting administrators. I rarely make appointments at school. This isn’t appropriate in every situation, but it does allow me to advocate on my own schedule.
I’ve learned to be honest with Moose about how I’m feeling. If I can’t kick the ball in the backyard with him or I’m impatient because I don’t feel well, he needs to know why. Otherwise, he’ll have the worry of realizing that something isn’t right but not knowing what, which I think would be worse than simply knowing that I’m crabby or unwilling to play. His reaction to my explanations has been encouraging: he’s responded with patience, understanding and hugs. And a whole lot of candy.
I’ve learned to use my own conditions as a way to introduce the idea of “you don’t always know what somebody else is dealing with” to Moose. We don’t know what others’ lives are like, so we might as well cut them some slack if they seem to be having a bad day.
I’ve learned to take pleasure in what I can do with Moose. As I’ve been laying low this autumn, that means reading Harry Potter books aloud to Moose and Gregg each night before bed. Sometimes we read by the fire. I love that.
I’m trying to go easy on myself. This one has been tough, particularly this autumn when I’ve moved from my usual “some good days, some bad days” to “why must I get out of bed today?” So my floors aren’t vacuumed, my house is cluttered, and my kid has to pull dirty socks out of the laundry basket before soccer practice. I focus on getting Moose and myself to where we need to be, and feeding my family nutritious food. I’ve chosen my priorities. Everything else, if it happens, is bonus points.
I’m trying to accept help. Who wants to ask for help? Nobody. But after so many friends and family members offered after my surgery, I began to take them up on it. It’s hard, but it’s okay to say yes. Their help gave me extra time and energy to be with Moose, for which I was incredibly grateful.
The one that’s been hardest of all, though, and that I’m still working on, is accepting the fact that I can’t parent the way I’d always envisioned myself parenting a child. I’m not the high-energy mom who’s volunteering, doing projects with my kid, shuttling him to classes and music lessons, always showing up, always taking part, reading all of the books he’s reading, taking him to museums and the library, and serving on school committees. When I found out that Moose is gifted, I had visions of ratcheting up my efforts to support his additional needs and satisfy his intensities. I was going to be that mom: Super-Duper Mom! I’m not. I do a fraction of what I’d envisioned myself doing as a mother. It’s a loss and a disappointment. But it’s reality. So, I’m working to envision a new reality in order to feel effective.
Some bad, but a lot of good too
Parenting a high-energy, physically intense, gifted child when I have invisible chronic illnesses isn’t all disappointment and frustration. Some days are good—great, even. I don’t always feel bad. And I get huge satisfaction from being a mom.
And on hard days, I see the compassionate, patient side of my son. He has his share of frustrations (after all, he did feel the need to point out to me that I’m the one holding our family back from a life of outdoorsy, sporty bliss), but as he grows, he’s beginning to understand others beyond himself. While this isn’t a lesson I wanted to teach him this way, it’s one that I’m glad he’s learning.
Do you parent with a chronic condition (invisible or visible) or other challenge? What have been some of your frustrations? What tips can you offer other parents?