Am I a Unicorn?
June 10, 2013
Stories of autism moms have been shared and celebrated for years, and rightfully so. With a growing population of children being diagnosed on the spectrum, new autism moms are being inducted into this exclusive club every day. If 'exclusive club' gave you visions of velvet ropes, a VIP lounge, and bottle service, you've got the wrong club. Autism moms are more like the motorcycle gang on the other side of town, and as passionate and protective for their children as the gang is for their bikes. And if you even look at their bikes/kids funny, you may find yourself well-acquainted with the business end of a pool cue.
Autism dads are out there too, but with divorce rates and traditional custody arrangements being what they are these dads tend to have a much lower profile. Bumping into another dad at a TACA meeting or a conference isn't four-leaf clover rare, but it is rare enough that there is an established yet unspoken protocol for when two dads cross paths – two to three seconds of maintained eye contact and a swift head nod (which can be optionally garnished with a blink) serve as both a gesture of goodwill and a mutual acknowledgement that autism dads are entirely powerless against their warrior mom overlords.
Autism grandparents are yet another less visible demographic, perhaps in divorce situations serving in loco parentis, and always the first stop for any fundraising (hint: they LOVE cookies). Autism brother and autism sister are helping out too, with autism aunt and uncle pitching in when they can.
I am, technically speaking, none of these people. I am an autism stepdad, the unicorn of the autism family ecosystem. Remember that motorcycle gang I was telling you about? With the pool cues? I married one of them.
How rare is the autism stepdad? Let's ask Google.
“Autism mom” - 95,000 hits.
“Autism dad” - 24,000 hits.
“Autism stepdad” - 4 hits.
Four. This is by no means a scientific experiment, but the results are still fairly incredible, considering that “Autism dachshund” graces the web more then 500 times.
When Deanna and I started dating, she made it clear that her daughter (already diagnosed and then three years old) Rosie would always be number one in her heart and that I would be no better than number two. Many moms may think that way, but warrior moms actually sit you down, look you in the eye, and say that stuff right to your face! As the child of a single mother who also had the protective instincts of a lioness I respected and understood her sentiment. I must confess, however, to being mildly put off when Deanna amended her statement in a follow-up phone call with the clarification that she also owned a comically giant Clifford-sized dog, relegating me to number three.
For most people, the feelings of parenthood start during pregnancy when the expectant mother takes certain precautions to care for her unborn, the couple adoringly view ultrasounds, and the future father may assemble a crib and make midnight runs for ice cream. At the moment of childbirth, true parenthood begins. Stepdads like myself with no biological children of our own typically start the evolution into fatherhood a little later on in the child's life, and that sensation of parenthood has to develop gradually over time.
Being a stepdad was a bit awkward at first. I distinctly recall being at events with Rosie when she was four or five, and strangers would approach me to tell me how cute she was (see photo for evidence). My responses were less than graceful. Where biological parents tend to take these types of compliments with gratitude, this scenario was entirely new to me. My instinct was that I can't simply say thanks (as some sort of tacit acknowledgement of credit for her cuteness) based on her lack of my DNA. I usually went with something along the lines of “I know, isn't it ridiculous?”
I remember the very first time I had what I felt was a parental moment. I dreamt that I was in a grocery store, pushing Rosie along in the seat of the shopping cart. There was a Jimi Hendrix song playing over the store's sound system (in my dreams all grocery stores exclusively play classic psychedelic rock), and Rosie looked at me and said “Is this song by Big Bird? It sounds like Big Bird.” And I told her emphatically, “No, that's not Big Bird. That's Hendrix.” The dream was entirely unremarkable, except for the fact that at that time Rosie had not spoken more than a couple words, formed a sentence, or ever framed a single question. I learned a couple years later that my mother, who had no grandchildren of her own, had similar dreams where Rosie spoke (likely without the Hendrix).
Of course, I have had other parental moments that were less than glamorous. In the first few years, nights were always filled with mystery and suspense. Will she sleep tonight? Will we wake up to a flooding bathroom? Will she have her crib radio playing the same three lullabies on an infinite loop all hours of the night à la the world's worst DJ? “DJ Rosie here spinning all your bedtime favorites! That of course was Brahm's Lullaby, and before that Twinkle Twinkle and Baa Baa Black Sheep – coming at you next, by no one's request, Brahm's Lullaby and Twinkle Twinkle!”
I've been bitten and pinched enough for several lifetimes, and there were years where I probably lost as much sleep as I got. Some young children with autism have been known to empty the contents of their diaper, then to smear or throw their creation. This was our reality, and yes, sometimes it does hit the fan. That phase didn't last long, but left an indelible impression. Just like other autism parents, I've seen (and stepped in) things.
To any aspiring autism stepdads, it's not all feces and insomnia. You are going to learn so much. If you like acronyms (and who doesn't?), you are in for quite the treat! It's a little known fact that autism moms and dads communicate primarily using letters. An ASD DX may result in EI in the form of OT, PT, or ABA, then in an IEP fighting for an LRE, eating GF/CF, leaving you to ask yourself “WTF?”. So yeah, there will be acronyms.
When autism moms discover that you are an autism stepdad and not an autism biological dad, your stock may rise a few points. The moms will whisper, “He's so good with her. Did you know that he's not even her real dad?” You may be portrayed as a knight in shining armor on a white steed, coming to the rescue,which of course is not true but a vast improvement from the reality of chubby guy in a track suit driving a minivan. The single autism moms may view you as some semblance of hope that they, if they so choose, will find a partner to share both the victories and trials that come with raising a child with autism. Single autism moms love their kids too much to ever settle.
I must confess, becoming an autism stepdad was never an item on my bucket list. You fall for a girl, you meet the daughter and the autism and fall for the package, you begrudgingly accept the giant dog, and there you are. The experience over the first seven years has taught me much about humanity, humility, patience, and the ability to love someone unconditionally who may not always seem to love you back. Like many, I never expected to be a special needs parent, but I have never regretted the decision.