Thanks, Mom, For Teaching Me How To Be A Special Needs Mom

thanks-for-mom“Ooooh, look at the chubs on that baby!”  Mom’s always been a big baby lover. The mushier, the better. She’ll talk at length about the dimpled hands and the fat rolls on the thighs of babies she barely knows.

“Ooooh, his pointer finger is so pudgy! And look at those dimples!” Max is a few months old, and my mother is visiting. My mood swings between depression and pragmatism: I have a baby, he needs care. A whole lot of care. Max had a stroke at birth, he is at risk for not walking and talking, and nobody knows much what his mental capacity will be. I cry in the shower every morning. I am too anxious to enjoy my son. But all my mom sees is a delicious, yummy little baby boy. “I am going to eat him up!” she proclaims. Her adoration is infectious. I take Max from her arms, feel his soft skin, nuzzle his chubby cheeks. I need to enjoy his baby-ness more, and worry less about a future I can’t control.

“Take your vitamins,” Mom says.

I stare at the gigantic tan-colored pill sitting on the table.

“Mommy, it’s too big!” I whine.

“Just swallow it fast,” she tells me. “You can do it! Go on.”

“It’s toooooo big!” I repeat.

“Just take it,” she says in her usual matter-of-fact way. And I do.

I am staring at a clear glass tube the length of a coffin. It’s called a “hyperbaric oxygen chamber,” and the theory is that oxygen infused into the chamber can help people with brain damage. Like the kind Max has. My husband and I have gotten him therapy up the wazoo, both traditional and alterna kinds. Now I have to lie down in the claustrophobia-inducing tube with 9-month-old Max. I am a little freaked, but I have a swallow-the-horse-pill-fast attitude. I climb in and lie down. My husband tucks Max into the crook of my arm, and the technician slides the cover shut.

My mom, sister and I are headed out to do grocery shopping on a Saturday. There’s an elderly woman standing at a corner. “Let me help you,” Mom offers. She cups her elbow and gently starts guiding her across the street as my sister and I walk alongside them. “Thank you, dear!” the lady says, a smile lighting up her face. My mom helps people wherever we go.

Max is on the floor on his hands and knees, and I am helping him learn to crawl. I move one hand forward, then the other, then one leg, then the other. He is nearly two years old and he’s been commando crawling on his belly, like a soldier in training, because his limbs don’t yet have the strength to hold him up. But his physical therapist has shown me what to do, and I am determined to get this child to crawl. I hover over him, urging him on one move at a time.

“Sweetheart, would you like some pretzels?” All the kids come to our house for snacks because Mom has a stash of goodies for them. She loves to give out treats, to nourish people. In college, my friend Buddy will dub her The Fruit Lady because when he visits, she immediately offers him a piece of fruit. Years later, when I’m in my twenties, Mom will call me at work and ask, “Did you eat a healthy lunch?”

“Mmmmm, chocolate ice-cream!” I’m in an ice-cream parlor with Max. He is three years old, and he’s having trouble eating it. The cerebral palsy messes with his muscles, including the ones that move his tongue around. Until I had Max, I never once considered that tongues have muscles, but they do. He also has trouble retaining food in his mouth, so he dribbles out most of whatever goes in. I am spooning the ice-cream into his mouth for him, then spooning it back in, as I will do for years to come. This child needs to savor treats, and all that life has to offer.

Mom is good at writing letters. Whether she needs to make a case for something with the principal or she’s writing a business letter for Dad, she writes charmingly and convincingly. I want to be like her and so, for my eighth birthday, I ask for a typewriter and I get one. I pound out letter after letter to friends, relatives, practically everyone I know.

“To Whom It May Concern,” I address the insurance company. “This is regarding the feeding therapy claims you have denied. Max, my son, has cerebral palsy and resulting issues with chewing. Oral-motor therapy is necessary to help him better learn to chew and swallow liquids, too. If he does not receive this therapy, he might choke on his food or asphyxiate liquid into his lungs. Given his muscular challenges, there is a real chance he could die from choking if he does not get this therapy. Enclosed you will find notes from his speech therapists and pediatric neurologist further detailing why he needs this therapy. I am keeping a copy of this letter, so that should anything harmful happen to my son due to chewing issues, I will have proof that I had requested this therapy and clearly explained its necessity. Sincerely yours….” I have a way with words, too.

Mom is so proud of me for getting the Creative Writing Award at high school graduation; she’s beaming as I walk up to accept it. She is not a mom who’s ever been very focused on grades; she’s never said a word when I haven’t aced a test, nor has she pushed me to always score 100. “Perfection is overrated!” she likes to say. She’s always telling people what a good writer I am and how smart I am. She is a wonderful publicist.

“YEAH, MAX! AWESOME!” Max is 9, and he has written out his name for the first time, grasping the pencil with all his might and writing M-A-X as best he can. Max has his challenges, but so many strengths. He walks really well, he tries to say words. His visual memory is better than anyone’s in our family. He charms the heck out of people, even grumpy ones, with his sunny ways. A disabled child? NO. He is a child FULL of abilities.

Mom raised me to be not just a great mom but a great special needs Mom—and for that, I am forever grateful. Thank you, Mom, for reminding me to cherish Max when all I felt was anxiety, for showing me how to be a super-nourishing and encouraging parent, for instilling in me the common sense and can-do strength I’ve needed to help him. And thank you for showing me that perfection isn’t the point—but encouraging your child’s individual strengths and always cheering him on is.

Article Posted 3 years Ago
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