Parenting — The Thing Without a Name

By Kami-Leigh Agard

Folks, this past week, I had to take a mandated hiatus, and as always, I’m forever grateful for my mom, granny and daughter’s dad, who all stepped in to care for our not-so-little anymore, incredibly mischievous Energizer Bunny. As I laid in bed at Club Med, gazing at the panoramic view of the 59th Street Bridge and East River, getting some much-needed libations, I worried. Worried about who was dressing my daughter? Worried about who was grooming her lion-like mane? Worried about how were they holding down the fort amidst the revolving door of DSPs (direct support professionals) and therapists coming to the house? Worried about her safety. Did they remember to lock the front door and windows? Worried about her lunch. Were they warming her food to the volcanic temperature she likes? And as the questions and worries weaved in and out like a car on a zooming highway, I picked up the phone, interrogating my gran. Even more worrisome is that the four of my daughter’s prime caregivers have a very distinct parenting approach, and comically, my daughter—our common denominator—couldn’t care less, and is as tamable as the Muppet, Animal, in Sesame Street.

Lord, bless her kind, well-intended heart, but my mom is the helicopter nana. You know the type that constantly hovers, critically eyeing every detail and short-coming? “Kami, I keep telling you stop wetting Soa’s hair, it’s cold outside! “Rado (my daughter’s dad), why is Soa’s coat not zipped up, she is going to get pneumonia!” And the tirades would continue, day and night, provoking me to silently cuss. However, my daughter’s dad, who has the patience of a saint with a sardonic alter ego, would answer her question with a question. “I don’t know. Why isn’t her coat zipped up?”

My granny is the perfectionist. One time, I was putting a jumper on Soa, and she remarked, “Kami, that top is rumpled. Not a good statement.” I could count on my fingers the times she has NOT remarked, “Kami, Soa’s trousers are twisted.” To that, I would roll my eyes, give her a look, swallowing cuss words.

If Soa is Animal from Sesame Street, my daughter’s dad is Animal, Sr. On numerous occasions after a day of fun, he would bring her home, as groomed as a banshee. Clothing ripped and stained, hair running wildly as if she just returned from an audition for “George in the Jungle.” I would give him a painful look, my eyes bulging like saucers, bemoaning, “Oh faddah! Where the hell have you guys been?” (Note, that I would have to be whispering because I’m not allowed to swear in my family’s puritanical household, which is difficult as my daughter would be howling in laughter). Again, a man of few words, he’d respond, “We were having fun.” Fun indeed, with me left to cleanup!

Then, there’s me. Truth be told, I guess I’m a combination of my granny and mom, sometimes enviously wishing I was more like her dad. But you know what? She loves us all, even her strict and exacting mommy.

When, they brought her to Club Med for a visit, I was nervous. Curious to see her reaction to seeing me after a week apart. My daughter is one of those children who seems to disassociate, though she’s astutely observing every detail from the corner of her eye. When the nurse came to give me more necessary libations, Soa suddenly pounced on the bed, as if to say, “What the hell are you doing to my mommy!” This made me laugh so hard that I started to tear, thinking as crazy as we all are, she loves us all in our madness! Folks, this is just a public service announcement to say, whether your children are autistic or not, whether you live in a traditional household or one as dysfunctional as Archie Bunker’s, love and understanding is what ties us together to not just do but be the best for our children!

I talk about autism to open doors into the reality of our lives as caregivers, build understanding, tolerance and growth of our “artistic” children. Share your thoughts by emailing: kami@rockawaybeachautismfamilies.org.

Also, save the date! Rockaway Beach Autism Families’ next monthly family support group meeting is Thursday, October 24, 7 p.m. at Knights of Columbus (333 Beach 90th Street). For more info, visit: Rockaway Beach Autism Families on Facebook/Instagram.