I always imagined I'd be a soccer mom, given the family I married into. But...during Liam's first soccer practice (in which I had to stand back at the fence so that he wouldn't see me and become distracted), a reality swept over me that I just might not get the "privilege" of being a soccer mom. Liam did just as we had read he might do: not look his coach in the eye, not engage in appropriate conversation with his peers, scream when he didn't understand the concept of the game. Oh yeah, and after repeatedly throwing himself on the ground screaming every time he didn't get the ball or someone kicked it away, then he threw in a curve ball: grabbing the ball and running off the field in an attempt to say, "I'll show you!" Coaches and parents found it hysterical, but they aren't raising him. They don't know what this REALLY means.
It's impossible to explain these behaviors to someone who just wants to tell you how you need to discipline your child. Or how having Asperger's doesn't give them an excuse for bad behavior. We are about to embark on a weekend of SERIOUS reading with our new Asperger's books - and I would say that anyone who feels the need to tell us this really needs to pick up an informative book on the syndrome. The very essence of the disorder is that is causes the child to have "meltdowns" that seem inappropriate for their age - not because they are spoiled but because they cannot deal with emotions in the same way that other children can.
So, it's not an excuse. It's the reason.
This fall, my husband and I finally put our reliable 1995 Dodge Intrepid out to pasture and bought a cool 2005 Chrysler SUV. The Intrepid took us through many memorable road trips and safely saw us through a decade of New England winters, but it was time to get a vehicle roomier to accommodate not only my son’s growing legs, but also the ever-increasing mileage we seem to put on our cars.
When the unsuspecting young salesman suggested to me that perhaps a mini-van might best suit our driving needs, I nearly snapped his head off in my reply, “You’ll see me dead before I’ll drive a mini-van.” After pulling the poor guy off the floor, I apologized as I dusted him off and inwardly asked myself what was wrong with me? What is it that makes me sensitive to something so seemingly innocent as the suggestion of driving a mini-van? After some soul searching, the answer became obvious: it’s an association. I associate mini-vans with the stereotypical idea of “soccer mom,” and I am anything but a soccer mom.
Now, I don’t like to think of myself as a judgmental person. In fact, because of the experience of mothering two children with autism spectrum disorder I’ve learned how painful judgment can be when on the receiving end of it, so I try my best to live the golden rule: “Treat others the way you want to be treated.” Therefore, I’ve picked my own brain to get at the roots of my distain for any association with “soccer moms,” as I know there are many soccer moms out there who are very nice ladies (I actually know some), but I think I’ve dug down to the truth and figured out what my hang-up is all about.
When my daughter was around five, many moons ago, she was fully included in the local Kindergarten/ Daycare. All the parents were excited that their kids were of the age to begin recreational soccer. Being a pioneering parent of inclusion in my small town, I signed my girl up for soccer with all her peers and hoped for the best. Needless to say, it was a disaster. My daughter would tantrum when she didn’t get the ball kicked to her, and if she had the ball, she would tantrum when another kid tried to kick it away. She cringed at the sound of the coach’s whistle, became distracted by a bystander’s dog, and picked handfuls of grass in the field to throw over her head. I couldn’t assist her in the practices as I was too busy running after my toddler son, also on the spectrum, who kept heading for the soccer ball on the field, and more frightening, for the woods that lined the field.
Soccer practice was a nightmarish failure, on display to a community that didn’t know how to support us and didn’t seem interested in doing so anyway (I’m sure there were exceptions, but I was too distracted and hurt to notice). Soccer practice was the realization that no matter how much I might support my kids, there were some things that they wouldn’t be able to do successfully. I think this is where my distain for the term “soccer mom” stems from: that early realization that my life as a mother of two children with autism was so different, so removed, and so alien to all those other mothers on the sidelines. I was resentful that they had the luxury of chatting with each other without worry and distraction, spending those lovely fall afternoons making social connections that would tie them to the community while I, tearfully leaving the soccer field with a screaming child under each arm, developed a distain for soccer and all the “normal” moms that happily experienced the sport through their “normal” kids.
Time and wisdom heals old wounds (and allows old soccer balls to deflate and wind up on the bottom of a pile of unused toys in the basement). But seeing me in my SUV, frazzled and disheveled, with my two good looking kids, zooming them from here to there, cell phone to my ear with papers loosely flapping in the back seat, one might easily mistake me for a soccer mom, too. I can’t let that happen. I’ve worked too hard at the autism thing to be mistaken for a parent who has a social life centered on recreational sports. Alas, I am the antithesis of Soccer Mom….I am Spectrum Mom!
The increasing miles put on my car are not for soccer and dance practices, or taking my kids to social outings at the mall or a friend’s house, or to get to the gym for some “me time” at a Pilates class. Instead, my mileage compiles going to and from two different school districts, to therapies half a state away from where we reside, to Special Olympics events, to conferences and appointments regarding autism, IEP’s, transitional services, medication management, legislative issues, and stopping at various drive through restaurants for those French fries that seemingly sustain my son’s very life. I do not chat on my cell phone with friends or neighbors about the latest town gossip, or to complain about how busy my children are with their friends. Instead, I use my cell phone to communicate with the vast network of people with whom I work and I’m involved because of autism.
We are another species from another culture, we Spectrum Moms. Vastly different from Soccer Moms, and yet with slight similarities that may confuse the untrained eye. I want people to be clear about who we are because we deserve the respect that is inherent to working so darned hard. I’ve even designed a car magnet to mock the “soccer mom” magnets so we will recognize each other on the road when the rocking figure in the passenger seat is not obvious enough for us to notice one another. I am proud of all my sisters, Spectrum Moms, as I am of myself, for “perseverating” in the face of indifference, for finding unending strength, courage, and humor in the little things, and for insisting that the world see the beauty in our children as we see it.
So if you see me out on the road with a donut hanging out of my mouth and a “Spectrum Mom” car magnet where you might expect to find a soccer mom decal, honk if you are a Spectrum Mom, too! Your smile, amidst the bags under your eyes and through the Chicken McNugget grease on your car window, will make my day!
Viki Gayhardt is the proud mother of two children with ASD, a board member of the Autism Society of New Hampshire, and a autism family support specialist.
