Secrets of the Special Needs Mom
All moms are special and, heaven knows, all moms have needs. But there are those among us, like myself, who have found ourselves singled out in the crowd. Our children, because of health issues, genetic mutation, accident or injury are defined as Special Needs. We, who are their moms or dads are called Special Needs parents.
I bet there is one of us right in your neighborhood. You’ve seen her, at school or daycare, in the park. Maybe you’ve even admired her from afar as she stoically faces untold challenges raising kids that are “not off the rack” so to speak. One thing you feel certain about, is that she is nothing like you.
You’ve seen her on the airplane. Her child is frantically flapping his arms and making strange squawking sounds, while she continues speaking to him in a calm, modulated voice. It’s as if this giant scene her child is making, that is visibly annoying the businessman in the second row, doesn’t upset her a bit. She must be a hero.
Perhaps you’ve seen her on the nature trails. Her child’s motorized wheelchair has somehow managed to get snagged on a stray tree root. Her little boy, who was so looking forward to this outing, has limited speech, but a normal temper. He keeps slamming his hand down on the forward button, screaming, “WANT GO! WANT GO!” as she gamely attempts to lift the combined weight of chair and child. What a hero.
Or maybe she was the mom you saw sitting in the stadium viewing stands awaiting her daughter’s big moment as a Special Olympics medalist only to hear a smart-alec middle schooler behind her say jokingly, “So now we get entertained by the retards.” The fact that she does not stand up, turn around and slap the teenager’s expensive orthodontia right out of his smug, self-satisfied mouth makes her a hero.
The larger than life Special Needs Mom is almost a cliché in our culture. They are selfless, devoted and endlessly patience. They are nothing like you. You are the parent of a “typical” child. That’s a nomenclature thing. We don’t call your child “normal”. If we were to do that, then that makes our children “abnormal”.
Our children are not abnormal. And as parents, honestly, we are very much like you.
I’m not surprised that you wouldn’t know that. You’re certainly not alone. Television shows and movies seem to always depict the parents of children with challenges as truly stellar characters. And even on the news, we get to see that Dad that pushes his wheelchair bound son in the marching band or the mother who gave up the fascinating anthropology work or the fashion runway to stay home and spend her days trying to make eye contact with her autistic offspring.
“God provides Special Children with special parents,” my pastor told me one time.
Talk about wanting to slap somebody’s teeth out! (And it would have been easier than the teenager’s as the pastor’s were only held in by Fixodent.)
With very few exceptions, handicapped people are not born to those who volunteer to rear them. For most of us, well, it was more like we were drafted.
Never, in my remotest imagination did I think that I would end up a Special Needs Mom. Healthy, happy, solidly married, financially secure, not too old, not too young, great genetics and an uneventful pregnancy somehow led me to this road less traveled.
I didn’t immediately recognize it as off the beaten track. After a scary emergency C-section, where the fetal heart beat stopped twice. My beautiful Leila slipped into the world screaming bloody murder. Wide-awake with a full head of hair, she was the most beautiful newborn that I had ever seen. And she was adorable. Who could resist her? Definitely not me.
They kept her in the hospital for five days running tests, but found no problems. Her Apgar was good. She was healthy. Maybe she was a little overdeveloped. Post-maturity they called it, but didn’t raise any red flags. I took her home.
She was the best baby ever. People commented on it all the time. I assumed it was my excellent parenting skills. In order to sound more modest I told people, “Heaven looked down at me and said, ‘This woman can’t handle much. Send her an easy one.’” Everybody laughed, just as I intended. I had no idea that the joke was on me.
I’ve learned a lot in my daughter’s lifetime. Lots of lessons I never even knew that I needed. One day I was at lunch with a work friend who said, “I could never do what you do.”
I should have smiled, thanked her for the implied compliment and let it pass. But on this day, I didn’t. I filled her in on the secret that I’m sharing with you.
“Oh yes, you could. Oh yes, you would.”
Parenting is parenting, and it’s a continuum. Some little ones can be born in this world and with virtually no guidance manage to find their way to successful adulthood. Others can be born unable to breath without assistance.
Here I’d like to quote a couple of rhyming lines that the kids learned, useful when handing out prizes or treats that were perhaps not all the same size, color or desirability.
“You get what you get and you don’t throw a fit.”
Whenever or however you take up the mantle of parenthood, we all know it does not come with guarantees. The dad who wants to re-live high school football stardom through a son, seems destined to be blessed with a bevy of pretty pink princesses. And the mom who found Debate Team so empowering, is often dumbstruck with her child’s ambition to be a cheerleader. Special Needs parenting is, more honestly, a dimension of that than it is a noble duty or a cross to bear.
Yes, it can be stressful, exhausting, thankless and sometimes scary. Welcome to motherhood. Every mother/child relationship has days like heaven and days (maybe weeks) like hell. Being mom is simply not easy.
I think the thing that’s maybe harder to convey is that we love our children as much as you love yours. The sight of them doesn’t scare us or repulse us. We see them with the same loving eyes with which typical parents gaze upon their typical children. Which brings me to the biggest secret of all?
We don’t envy you. It may be unexpected to hear this, but we love our children as they are. The problems they have are the problems that we’re used to. And the pluses that come with that, outweigh so many things that we once valued.
Every morning when Leila boards her bus to the Sheltered Workshop where she is employed, she has a smile on her face. In the afternoon when she comes home, she’s still grinning. She loves her job. When her tiny paycheck comes, she wants to rush to the bank where she is so proud to write her name on the back. None of my typical children are as happy, as fulfilled, as contented with life.
So many times, at so many milestones, I’ve tried to imagine what Leila might be like if she were typical. And my conclusion continues to be, she wouldn’t be Leila. She is funny and hardworking, endlessly optimistic and interesting. She’s devoted to routine and she keeps the rest of us in line. She is a vital part of our nuclear family and unlike her siblings, she will not be going off to form her own unit, to have her own children or live a separate life. She is ours forever. That makes our world different, but it doesn’t make us different. And it doesn’t make us heroes, merely parents.
Pamela Morsi writes fiction that depicts the lives of ordinary people overcoming everyday challenges. And she manages to do it while putting a smile on your face. After a successful career in the historical romance genre, Pamela Morsi ventured into contemporary fiction with her titles for MIRA Books, including, Bitsy’s Bait & BBQ, Red’s Hot Honky-Tonk Bar and The Lovesick Cure. Being a writer was a childhood ambition that got sidetracked by life. Despite having a graduate degree in library science, a marriage, children and a career, Pam had never met a real novelist and didn’t have any idea how to become one. Then one fateful afternoon, on her birthday, she came home from work in tears. “I could have been a writer,” she told her husband. “I could have been a writer, but now because of you and this house and these kids, it’ll never happen!” He was sympathetic… for a while. A few days later, he bought her a computer and set it up in the corner of their bedroom. “You can’t quit your job,” he told her. “But I can take care of the cooking and the kids. You have every night and every weekend. Write your blankety-blank book or shut the blank up about it!” Now, twenty-four novels later with her full share of great reviews, awards and bestseller listings, she’s still not sure how one goes about being a writer, except by simply sitting in the chair and typing one word after another. Pamela does this consistently from her family home in San Antonio, Texas.
