On my son’s first birthday, a stomach virus knocked him flat. For the next few days, he couldn’t keep anything down. Even though he begged for the comfort of nursing, I had to ration his time on the breast. We fed him Pedialyte from a dropper. He screamed in protest until thirst overcame his resistance.
After a few days, he rallied. Small portions of pureed food stayed down. Great quantities of breast milk too. He resumed scooting all over the house and tormenting the dog. The doctor had said he’d get over it, and this seemed to hold true.
Except that he kept losing weight.
Weeks after that first bite of birthday cake, Bug’s system continued to misfire. He wasn’t digesting properly. The frequency of his diaper changes matched that of a newborn’s while his face broke out in an angry case of eczema. His cheeks cracked and bled. Even on just mama’s milk, Bug continued to have troubles.
Doc prescribed blood tests. He was mystified by the mostly normal results. Food allergies, gastrointestinal complications, stomach virus? He sent us to a pediatric GI specialist two hours away. Still nothing. I tracked down a nutritionist. In the company of other moms, I asked intrusive questions about diets, then cross-checked their approaches against every book I could find.
Eventually I found my way to the elimination and challenge approach to identifying food intolerance. We had to remove all of the most common allergenic foods from our diet, reintroduce one, then remove it again and introduce the next. At a week or two for each allergen, the process took months. A detailed journal of his food intake and physical symptoms revealed unexpected patterns. Of the nine most common allergens, it turned out my boy’s growing body could only tolerate three: shellfish, sesame, and tree nuts. We would have to cut out wheat, dairy, eggs, peanuts, soy, and sulfites.
Because Bug was still breastfeeding, I stopped eating all of these things. My then-husband, Tee, was working as a camp director while I stayed full time with Bug in the camp house. Our kitchen underwent a total transformation. On trips to the supermarket, Bug and I only picked only the costly, wholesome ingredients for our family meals. We often drove 90 minutes each way to the closest city so we could track down garbanzo flour and rice milk at the health food store. While Tee still got his occasional fix of pancakes and corn dogs in the camp dining hall, our home became a test kitchen for a quickly expanding hypo-allergenic menu.
When I told friends about these changes, they marveled. “How in the world do you do it?”
“It’s no big deal. You just adjust. I like cooking.”
They claimed that it would exhaust them. They’d struggle to change their own diets, their spouses would never sign on, how would they even find the recipes and the ingredients?
I’d shrug. “Beans, vegetables, meat, fruit, nuts, rice… there’s actually a lot here to work with.”
My sister pointed out to me that I was the perfect mom for Bug during all this. I’d lived for nine years in Vermont as a vegetarian, and for two of those as a vegan. My various earthy neighbors and I would shop at the co-op. We used local and seasonal things grown by our farmer friends. The family cooking I’d grown up practicing blossomed into something altogether new. It turns out that it is indeed possible to make pastries without eggs or butter. Roots, broths, and beans used commonly in other parts of the world allow for the new takes on familiar dishes. At least two decades before the first ramen bar opened up in the East Village, my Nepalese housemates taught me how to turn 25-cent package noodles into a feast.
Playing around with menus and ingredients, that was my bag. My sister was on to something. I was the parent Bug needed.
Being the right mom for him came easily. His needs, my strengths. We fit.
After three years of almond-oat cakes and curried squash soup, Bug outgrew all of it. Something in his system had healed or caught up or whatever needed to happen. The boy raised on Vietnamese rice noodle salads transformed overnight into your typical American pizza-and-cheeseburger kid complete with dinnertime battles over how many broccoli florets count as a serving.
I was exactly the right mom for my son.
This is the mantra I’m trying to practice now.
It feels like distortion. Like lying under oath.
A decade after that first bite of birthday cake, Bug has a different sort of diagnosis. I will not disclose it here because at eleven years old, my son’s story is no longer mine to tell. He gets to own his narrative.
My part of this story, I have to tell.
Long before I married and had a kid of my own, I struggled with demons I didn’t understand. In my early twenties, a psychiatrist with an actual lying-down couch offered up a word that brought the world into focus: clinical depression. Two decades later, I’m still making sense of what that word means, how to live with the weight of everything it holds. I’m also still grateful to whatever crisis or friend or book quote or loving nudge finally got me to make that appointment.
Giving name to the chaos introduces elementary vocabulary in the language from which the name derives. It happens that the tongue of mental illness is forked. One prong narrows the corridors one can travel. It labels, it stigmatizes, it justifies the erasure of civil rights.
The other prong at least grounds us somewhere. A mental health diagnosis can introduce us to a small subset of humanity who can relate to us and share tools and insights. It casts a net around the tumult of noise, action, and sensation. Pulls it all together. Contains it. Most of us will have no chance to shed that unfortunate cargo, but we can at least carry it with only one hand. Most of the time.
Inshallah, my son’s diagnosis may do the same for him. Unfortunately, his does not fall into any of the categories that our world is learning to embrace. His has no T-shirt. No calls on social media to “reach out.” No month of awareness. Those heartwarming videos of young adults conquering the odds and finding stable jobs and loving relationships? They belong to someone else.
This label entangling itself around my son carries with it a wicked burden. It does not inspire tenderness and compassion. In fact, from what we’ve experienced so far, the set of behaviors associated with this label gives adults permission to call me into private meetings and tell me all the ways my son is a problem. They pile on, describing in minute detail his failures to meet up to the general expectations of children his age. They make absurdly earnest suggestions they would never offer a parent struggling with any other diagnosis (“You should sign him up for karate”). Indignant adults say things like, “By now, a child should know how to show basic respect.” Which sounds right until you replace that last part with any other behavior. “By now, a child should know how to read chapter books.” “By now, a child should be able to sit still through a movie.” “By now, a child should be able to pick up social cues.” Plug in another learning disability or diagnosis, and those shoulds suddenly sound as ableist as they are.
Good thing they do. In our workplaces, schools, and even pockets of popular culture, acceptance of the range of mental and developmental difference has expanded. This expansion has not happened by magic or by accident. In 1975, activism and public support finally got IDEA passed in Congress. Three generations of Americans have grown up in schools with robust special education programs and mainstreamed classrooms. Many of us spent our entire childhoods learning and playing alongside people who are not neurotypical. Many of us are ourselves not neurotypical and have benefited from improved inclusion and adaptation of learning environments.
People like Temple Grandin and Daniel Tammet have written their stories into the mainstream. In the Percy Jackson series of young adult novels, ADHD and dyslexia are characteristics common among demigods. As we gain a greater understanding of the complexities of the human brain, we may find that “neurotypical” no longer applies to anyone. We have many activists, scholars, and artists to thank for this progress.
Of course, we still have a long way to go.
Some labels still strike us cold. Some labels make us turn away.
My son carries one of these now. Because of this particular label and the behaviors listed under it in the DSM-5, my boy is more likely than his peers to end up in disciplinary trouble. He may face suspension, expulsion, or jail. He has a greater chance of abusing drugs and engaging in violence. His relationships may suffer, as well as his finances and job prospects.
Of course, these are odds, not certainties. But there is nothing pretty here. What’s inside him can eat him up.
Eat up my lovely, flourishing boy.
When he was one year old, something in my child stopped functioning well. I knew deep in my bones that I was the right parent to help him grow around and through that trouble. My role was plain as day: I was to clear away whatever would hurt him. Offer only what would sustain him. Learn everything our family needed to know in order to keep him healthy. Develop new skills and apply them daily.
Adapt. Provide. Attend. Nourish.
Now, I face a near total inversion of that sense of certainty. I feel like I am the cause of much of Bug’s trouble, a sadly common experience among mothers facing this diagnosis. Mothers far more than fathers bear a sense of responsibility, internalizing certain external perceptions of toxic, cold, or permissive parenting.
It’s a common response, but does that make the perception wrong? Isn’t it possible that our mistakes – that my mistakes – in fact contribute to my child’s difficulties? His hurt?
In the gloomy, lonely moments after one of the domestic struggles associated with this diagnosis, the possibility that I cause my son’s pain cuts down to the marrow. It makes me question everything. This is no exaggeration. Because I don’t know which parenting fails contributed to this tangled strand of my son’s development, everything becomes suspect. Every choice I’ve made as a mother, every belief I hold. Every self-concept. Every read on my own familial and cultural background.
I lose trust in my perception of my son.
I consider giving up custody.
I question my capacity for love.
This is what the ugly thoughts do. This is how the lies start to seem true. How my son’s diagnosis weaves into my own, how our wounds pull each other into a dark and intimate tango.
What’s far more terrifying than this spiral of self-pity is the sense of stuck-ness. I watch my son suffer as he does things that erode his relationships and potential. While making different choices seems so easy from the outside, that path confounds him. What confounds me is how to help him, how to guide him toward more even footing.
He hurts. He’s also growing into adolescence. My power to draw him in and ease his suffering diminishes by the day, while my capacity to exacerbate his troubles seems to multiply.
Here again, the inversion: his needs, my weaknesses. Like poles of the magnet. We repel.
Our HMO has gutted its behavioral health program so it took us some time and several false starts to find a counselor out of network. Trying to ignore the sucking sound as cash drains from our wallets, we now have this diagnosis and a calendar marked with weekly appointments. Our family is pursuing a treatment plan, yet the staggering scope of what this plan entails has me casting about for any source of strength.
That confidence from Bug’s early years is as good a place to start as any.
“How in the world do you do it?” The voice off-stage asks.
“You just adjust. You learn. You use what you’ve got and go out and find the rest.”
“But won’t it exhaust you? How do you change all your interactions? Bug’s dad would have to sign on, and doesn’t he make very different rules at his house? Also, you are a single mom working full time. How in the world will you manage the teacher meetings and the behavior plans? When will you do all that reading? This is a complete overhaul of your family dynamic!”
I shrug. “A counselor, a supportive boss, a strong co-parenting relationship, a bright kid… there’s actually a lot here to work with.”
While those years of Vermont farm food experimentation may not offer the grounding I need to support my son now, other chapters from my personal history might. For two decades, I’ve lived with depression. Through medications, talk therapy, fitness, dance, journaling, mindfulness, and other forms of self-care, I’ve managed this diagnosis. The wide range of literature has always been close at hand, evolving a shared understanding of how depression relates to brains, medicine, economics, and social history. More importantly, I’ve tried and applied a number of practices, making changes in how I move through my existence in this body and mind.
Living and learning mental health, that’s my bag. So maybe I can begin believing in a more hopeful read of where we are, this boy and me:
With creative determination, lightness, and care, my son can acquire the tools he needs to thrive.
Maybe I am exactly the right mom for my son.
Maybe my role is as plain as day.
I am to help my boy grow around and through this trouble. Clear away what might hurt him, particularly the misguided perceptions and interventions of adults (including my own). Offer only what will sustain him. Learn everything I can about how to help him succeed. Develop new skills and apply them daily.
Adapt. Provide. Attend. Nourish.
Image: Laurel Weathersbee, Two Souls, One Heart, on Teacup Inspiration (2011)