The woman at the desk smiled at me as I came in, then her smile wavered. I saw myself through her eyes; a gaunt, hollow-eyed woman balancing an overstuffed diaper bag and a beautiful eighteen-month-old child in her arms. As she rose to speak I stepped forward and
"My name is Jen. Please don't tell me I'm overreacting, please don't tell me I'm a nervous mother, and please don't tell me you don't test children before they are three. This is my son M and we are NOT leaving until he is tested."
The woman stared at me blankly and then slowly backed into the outer offices. As I settled into the scratchy chairs with my sleepy son I could hear the anxious whispers behind the door. Four and a half hours we waited, until finally a diminutive woman with a lilting voice and a gentle smile came out to greet us. Her name was Dr. XXX and she was the one who first spoke the words aloud: "Your son has autism."
Oddly, the first feeling I had was one of relief. FINALLY someone believed me! For months I'd been told how lucky I was to have such an easy child; content to rock in his swing and hum as he gazed at the ceiling fans and rain-streaked windows. In my heart I knew there was more to it than that and at long last there was confirmation. I walked out of the office armed simply with a pamphlet for Early Intervention services and a reassuring hug; from then on it was all up to me to rescue my baby.
Immediately upon returning home I loaded M and his twin brother J into the stroller and headed to the library where I proceeded to check out every book on autism that had ever been printed. I spent long hours rocking the boys in front of the computer as I gradually earned my PhD in autism research from the "University of Google". My husband and I quickly
learned spending $100 an hour on RDI and ABA therapists would not be an option so I taught myself everything I could; staying up until 3am listening to Stanley Greenspan lecture online and printing homemade PEC's on my computer.
Not all of our endeavors were successful. A friend told me how her daughter increased her vocabulary after supplementing with anti-virals and EFA's but this combination only proved to make M more "stimmy". There were times that I felt I could almost see him slipping further and further away. Those were the times when I would think to myself, "Stay with me, M. . .just stay with me a little bit longer til I can figure this out. Please." I threw every conceivable therapy against the wall to see what stuck. Speech therapy proved meaningless initially while occupational therapy turned my introverted little boy into a laughing, playful child. The hours I spent with M kneading dough and digging in piles of rice and dried beans helped his sensitivity issues more than anything else, and we soon learned how to make even the most meaningless daytime tasks into an opportunity to practice and learn.
As happens often with families of special needs children, the challenge proved to be too much for my husband, and he sought a "less complicated life" with another woman. My divorce was emotionally and financially devastating, but opened doors to me as well. I researched schools which would better meet the needs of my sons (exceptional services were woefully lacking in their present district) and we moved to a neighboring district that had a flagship program directed at children with high-functioning autism as well as music and art for my creative son, J. The rent was higher here, but if it meant taking the bus and living on Ramen for a while, I did what I had to do to get them into this district! I also knew that it would be impossible to raise my children on the paltry child support I received, so it was time to take my experience with my children and my passion for education to the next level and return to school. I completed my Masters degree in special education last year and am planning to start the doctoral program next year. But nothing I learned from a book or a desk has taught me more than the simple act of being a mother to two such miraculous children. And nothing I know as a professional can do jackshit about the day to day confusion, frustration, and misunderstanding surrounding mothers of children on the autism spectrum.
First of all, let me set the record straight. Mothers of children with autism are not perfect, selfless angels. We are not martyrs. We are not saints. Although any mother will tell you in all honesty that she loves and accepts her child, if you asked if she loves the fact that her child has autism she'll probably look you in the eye, blow her sweat-stained hair out of her tired face and say "Are you fucking KIDDING me?" I didn't choose to be a mother of a special-needs child. I am not heroic and brave. If I could go back in time and make a choice, you can guaran-frickin-tee you that I would not have said, "Why yes, God...a child with autism would be delightful". But it was not my choice, nor was it M's. Together we have learned to navigate the maze of autism and let go of the guilt and the blame and trust that maybe, just maybe, there was a reason why God saw fit to intertwine our lives so intricately. And parents of children with autism are not "stronger" or "braver" than any other parent; we are simply doing the best we can with what we're given, and sometimes that's enough, and sometimes it isn't.
And contrary to shows like "Touch" and craptacular films like "Mercury Rising", children with autism are not all altruistic, ethereal beings with cherubic smiles and pristine intentions. Children with autism are simply that: They are children. . .with autism. And like any other child, they can lie, and tease, and annoy the ever-loving shit out of you; so most of the time parents find themselves asking "Is this an autism thing, or it this a typical 'my-kid-is-being-a-pain-in-the-ass' thing?" Sometimes a cigar is just a cigar, Freud.
Autism and myriad other emotional and intellectual disabilities have their own unique set of challenges; largely because autism is what's known as an invisible disability. Because my son is not in a wheelchair, or holding a white cane, he is simply viewed as "odd" or "weird" and as such, others view his behaviors as a direct reflection upon my OBVIOUSLY sub-par parenting skills. . .which they are quick to point out to me. . .three guesses how well THAT shit flies. But, you learn to choose your battles wisely. They old lady rolling her eyes while my son goes postal in the middle of Target? Meh. . .not the hill I want to die on, Soldier. But the two grown-ass men teasing and mimicking my son's high-pitched laugh at the community pool? Oh, it is ON like Saigon, motherfucker. You don't MESS with an autism mommy. We are tired. We are angry. And we have nothing to lose.
But while each of these slights and hasty judgments cut me to the quick, all s well in M's world. He is a happy-go-lucky, carefree child. I carry the weight of M's diagnosis as I willingly carry every burden passed onto my child; with a strong back and a loving heart. If it is I that spends sleepless nights worrying about the latest "stim" or tic or behavior or weeps in the shower because of an unkind word or negative report from school then I will gladly embrace that in exchange for the honor of being the mother of such an exemplary human being. It is enough.
Being a mother of a child with autism means being ever-vigilant of any new stimuli in your child's environment. It means spending your days and nights hunting down just the "right" brand of peanut butter he'll eat, or cutting the tags out of her clothing because the feel of them sets her off. It means listening to the ham-handed advice and latest Witch-Doctor-Quick-Fix-Jenny-McCarthy douchebaggery some well-meaning soul passes on with a smile. It means being flexible every single second of every single day because even with the best of intentions and the most intricate planning, a fire alarm or flickering light can turn a simple trip to the mall into a child's personal Vietnam. But most of all, it means you never take anything for granted: not a smile, or an utterance, or even the briefest moments of eye contact. You recognize the small victories, and celebrate them with all your heart.
My son M is bright, and empathetic, and has manners that would make Emily Post look like Larry Flynt. He is a prolific artist with the singing voice of a choirboy and a natural affinity for sports. He loves math and meteorology and airplanes and classical violin and memorizing Bible verses, and I truly believe that this world is a better place simply because of his presence. There were many times I wished for a "cure" that panacea that would make M "normal" and then I realized that most "normal" kids can't recite the entire libretto from 'Wicked' from memory, or do long division in their heads, or create a map of the United States freehand after seeing it once. Trust me, "normal" is highly overrated.
Today my son M and his amazing twin brother J attend fourth grade together. M has an aide throughout the day and receives daily assistance in speech, social skills, and behavioral management. We still struggle with his ability to interact with other children and his echolalia (reciting SpongeBob episodes verbatim is a favorite past time!), but withlove and guidance he is blossoming into a happy, outgoing child. I am finally able to relax a little and know that M is progressing at a slow and steady rate. I am finally able to pursue my own interests, independent of my children, without fear that I am depriving them of precious therapeutic intervention. And I am finally able to look away from my son M for a moment without that paralyzing fear that when I look back, he'll have quietly slipped away.
Just as the first step toward my sobriety came with admitting I had a problem, so did my acceptance of M's autism. Are there still days when I'm jealous, angry, scared, confused, and frustrated? Absolutely. But I accept those emotions. I own them. And that is the first step toward fully accepting my unique child. For me, the journey with M has been enlightening. It has taught me patience. It has taught me to trust my instincts. It has taught me that I am the greatest advocate for my children. It has taught me that what works for one child with autism may not work for another and that even if something works one day you may have to reinvent the wheel the next. It has taught me that differences exist all around us and that acceptance and love will conquer any adversity. But most of all, it has taught me that M is not a problem to be solved; he is a life to be celebrated.