This Mother of a Twice Exceptional Child Needs a New Normal
Last week I got to perform my piece, “My Name Is Tom” at the 2015 Listen To Your Mother Orange County show along with 12 other authors.
I’m thrilled to share just one of those pieces on my site today with the permission of scribe Robin Finn.
Robin writes this about being the mother of a twice exceptional child, which Wikipedia defines thusly: “Intellectually gifted children who have some form of disability. These children are considered exceptional both because of their intellectual gifts and because of their special needs.”
A New Normal by Robin Finn
“It’s your spine,” the reflexologist says, pointing to my neck and shaking his head. “C4 and C5, no good. Your body’s braced—very bad. For a very long time.”
“Is it the fibromyalgia?” I ask. It plagues me—the burning feet, the muscle aches, the tiredness.
He shakes his head and balls his hands into fists. “So tight. That’s why you have pain.”
I’ve been to the neurologist, the rheumatologist, the acupuncturist, but nothing helps. A friend of mine swears by Dr. Chang so I decide to give him a try. He says he can help me but it will take a while. My body’s braced—very badly— and it has been for years.
It’s time to make my health a priority, I tell myself. I want everything to be okay. Things are finally better, calmer, around our house. We’re in a good place.
My “twice exceptional” son – gifted and with significant ADHD and other challenges – hasn’t had a meltdown in months. There are no calls from the principal, no emails from other parents; we even went to El Torito on my birthday and made it through the whole meal—my two daughters, my son, my husband & me—without anyone crying or storming out of the restaurant.
I want it to stay that way.
I know I’ve been in lockdown mode—endlessly advocating for years. I’ve battled the school for services and accommodations. I’ve confronted teachers for more rigorous work and support. I’ve fought with principals, the school district, and sometimes, other parents. And I have two daughters who also need my attention.
That night, I sit on my bed and think about what the doctor said. My 9-year old daughter lies next to me reading a book. Suddenly she looks up ands says, “I always read ahead. I know I’m not supposed to. But I need to know what happens at the end.”
“I do, too,” I tell her, smiling into her brown eyes. She has no idea how much money I’ve spent at The Psychic Eye. I need to know what happens at the end so I can prepare. I often characterize our house as a war zone and I’m the soldier, commanding officer, frontline medic and PTSD veteran. Years of tension, tight, tight, tight lips, and folded arms; bracing myself—all of us—for the next issue, the next problem, hoping my defenses will withstand the assault.
Then, the unexpected happens: my son lays down on the bed next to my husband. They look through his anatomy book together. My daughter curls up under my arm. Everyone is together and nothing is wrong. And suddenly, we are lighter and laughing and everything in the house has a bit of a shine. I can’t explain it but there’s a shift and I understand: I can’t keep up the vigilance. The toll is too great.
I need A New Normal – not a flash of feeling “up” before a giant rush downward, not a brief reprieve or a moment of accidental relaxation, but A New Normal.
I feel myself relax in my body as I look around the room– my daughter in a white, oversized T-shirt, the one that once belonged to my dad, my son and husband cuddled up in a private world of science and body parts, and me, phone in hand, waiting for my high schooler to call, ready to be picked up after late rehearsal, ready to come home—to our home – the five of us – as imperfect as we are. I put the phone down.
That’s why you have pain, Dr. Chang tells me—I have to stop bracing myself. My daughter always reads ahead. And I do, too. I need to know how things turn out for this family and I don’t know and I can’t know and I’ve spent so many years trying—that it’s hard to stop.
But my kids are doing well, and so is my husband –lying aside a college anatomy textbook, his hand slowly rubbing our son’s back. I don’t know how long this moment will last——nobody does—but, maybe, it doesn’t matter. I’ve spent years believing that if I fortified myself enough, I could make things turn out right. But I can’t. And, maybe, that’s okay.
I glance at the phone on my dresser. I know it will ring, but I don’t have to wait for it. I’m living A New Normal. When my daughter calls, I’ll get up, go find my keys, and pick her up from school. But for now, I tell my kids and my husband to move over, kick off my shoes, and lay down next to them on the bed.
Robin Finn is an author, essayist, and advocate. She has master’s degrees in public health and spiritual psychology but her greatest learning comes from raising three spirited children.
Robin recently completed her first novel—while carpooling between music lessons and soccer practice.
Her work has been featured on Brainchildmag.com, Mothering.com, ADDitude magazine, Kveller.com, and as part of the hit play, “Expressing Motherhood” in Los Angeles and the national play, “Listen To Your Mother” (LTYM).