Hurricane Sandy Was A Great Day! — People Don’t Get Autism, Families Do
World Autism Awareness Day — 2 April 2016
“They’ve cancelled school.” It’s bad news for any parent. The mid-day school closure ignites panic for most working parents. How am I going to get to the school in time? What will I tell everyone at work? How will I get my work project turned in that’s due in a few hours? But when your child is autistic, the stakes rise to a whole new level.
Autistic kids usually thrive on routine. Changes in the routine can be catastrophic. Their behavior can quickly swing out of control reaching unmanageable levels. Your autistic child may not sleep that night, or for many nights, till the routine returns. Or they may quit eating or spiral into an abyss of bad behavior. Then there’s the question of what to do. When bad weather hits, like it was on that day, therapists cancelled in-home sessions. Stores closed and outdoor parks became unusable. You’re trapped at home, for hours on end, trying to keep your child on a good path, dodging the fits, tantrums, and the natural complications of no routine.
There seemed to be no sense to the decision to cancel school. I vented on the phone: “I understand there’s going to be bad weather, but the hurricane is hitting New York City and we live in Boston. It’s just going to be a lot of wind and rain, we had worse storms just a couple of weeks ago.” Apparently a strong hurricane called “Sandy” would be hitting the New York City area tonight and cable television news had convinced everyone from Miami to Maine they needed to cease all activity and seek shelter.
I jumped in the car and headed towards the school; a pit in my stomach as I began anticipating what the challenges of the rest of my afternoon would be. My mind ran through memories of the final day of school before last summer break. Summer break meant three weeks without school, no routine — it’s always the toughest time of the year. I arrived in the hallway outside my daughter’s classroom that day for her final release. A mother of one of the other students in my daughter’s class waited outside. We were lucky to be in the Boston area, where the country’s best autism medical treatment, research, schooling and therapy can be found. Even this good fortune didn’t mitigate the daunting challenge of an extended summer break.
I glanced at the mother and said hello as I had done many times but noticed her turn away from me attempting to hide a few tears running down her cheeks. Three weeks with no routine. It felt overwhelming. I could see the anxiety on her face. “I know, I understand, good luck this summer,” I said to her. “Thanks,” she says. “You too.” We both nodded our heads in unison. The door swung open, our kids spilled out, and summer break began.
As Sandy approached New York, I walked into the hallway and again the same mother from the previous summer walked a few steps ahead of me. “Here we go,” I said to her. She laughed sheepishly, knowing exactly what I meant. The door once again swung open. How many days until school is back in session? When can we get the routine back? I thought to myself as my daughter, Pepper, trotted out the door backpack in tow seeming a bit confused as to why I’m there and class went so quickly that day.
We plopped into the car as wind and light rain started. The storm is coming I guess. We started the short trip back home. Bounding through the front door, she hit the kitchen at full speed ready for a snack and juice. Fifteen minutes later, snack and juice complete, I stared at Pepper. Pepper stared back while avoiding eye contact, in that autistic way where they peak at you out of the corner of their eyes. What are we going to do? Cable news channels were flipping their lid over this Hurricane Sandy and it seemed life would cease for a few days.
I’m now 30 minutes into my unexpected afternoon of dad duty. What if we went outside? I confirmed that while its windy and raining, the hurricane was hitting New Jersey not Massachusetts. The storm, at least at this point, appeared no stronger than the previous week’s shower. I looked at Pepper, restlessly meandering the living room, and announced, “Let’s go Pepper, let’s get outside.”
I suited Pepper up in her raincoat and dropped her into the car. There was an AstroTurf field a couple of miles away, a rare wide open fenced in space surrounded by Boston’s urban jungle. Pepper doesn’t understand things like personal space, traffic, or heights. The turf field is an ‘autism’ safe zone and a rare place where I didn’t have to clutch her arm in a death grip to prevent her from stumbling into a moving car or shadow her every step on playground equipment.
The turf field often provided me a great alternative where Pepper’s misperceived aggression wouldn’t draw the ire of the playground “Pack of Moms”, whom I collectively refer to as the P.O.M. The P.O.M. is the worst! The P.O.M. perch at the edge of the playground splitting time passively critiquing other parents through idle chitchat or endlessly scrolling their cell phone as their child runs rampant. Their eyes spew scorn and apprehension. Pepper’s a beautiful girl, no overt signs of autism on her face, so when she side swipes their kid en route to the sandbox or plows through their child positioned between her and the spiral slide, P.O.M. members collectively pass judgment as they rush to their uninjured whining kid. Their hollow “it’s OK” is usually coupled with the glare, “of course, he’s a dad, he doesn’t know what he’s doing, dad’s don’t pay attention to their kids!”
I’m often the only dad at the playground, so if the P.O.M. isn’t agitated by my perceived neglect, they find fear as I hover over Pepper preventing her walking off the top of a 10-foot jungle gym. On more than one occasion as I follow Pepper’s path, P.O.M. members have preemptively launched to retrieve their kid from my orbit. Thanks to 24-hour news horror stories, there’s only one other explanation for a male at the playground during the middle of the afternoon — child abductor. I’ve literally had mom’s retreat from the playground, child gripped tightly, simply because I said, “hey, how are you?” in response to their child greeting me. I tried a couple of times to allay the fears of the P.O.M. by engaging in conversation, but this also proved treacherous. Any move to join their ranks was met with distrust, or even worse, taken as a pass at them. The P.O.M. had convened and decided, there were only three explanations for my odd presence and behavior at the playground: a) neglectful dad unable to control his kid, b) child abductor or c) creepy pickup artist.
As I drove to the turf field, I prayed in the back of my mind. Dear Lord, please don’t let the P.O.M. see me at the turf field. One of them might call Child Protective Services on me for having my kid out in the rain. The news has scared away the crowds. Wind howling, light rain falling, the turf was ours. Thank God, no P.O.M.
Pepper dropped out of the backseat and immediately began stomping through the puddles. A giggle surfaced and she smiled as I grabbed her hand to lead her across the street. So far, so good.
We pushed through the gate. Pepper bolted across the turf, wind lifting her curly, golden locks straight back behind her. I’ve never seen this before. Pepper met the rain striking her face with a giant grin, shrills of joy broken up by brief giggles. Five minutes, ten minutes later she’s still running in the rain tracing the painted lines of the soccer field. She’s happy, unbelievable! A trip like this, on a typical day, might not even last ten minutes before we’d retreat to the car under threat of a meltdown. Or she might walk a little bit before flopping on the turf and giving the painted lines an unending stare.
Pepper sprinted straight towards me grinning from ear to ear. I grabbed her arms in joy as the wind and rain battered our faces. She looked me square in the eyes and held her gaze. She knows I’m here. Up to this point as a parent, I couldn’t really recall this ever happening before or at least not for very long. I spoke to Pepper and I knew she was listening. I dropped to my knees on the turf and continued looking her in the eyes, asking her if she liked the rain. She giggled some more with her eyes clearly trained on mine, lightly stomping her feet in place like she does when she’s happy. This is it, it’s what I’d hoped for all these years as a parent: feedback.
Pepper doesn’t talk. As a parent of a “non-verbal” in autism speak, you have no idea if your kid is ok, if they even know you are there. Days, weeks, even months might go by without much indication that you exist; it can drive you crazy — no connection, no reaction, no feedback. You feel as isolated as your child. The silence sometimes would go on so long I’d try to break it by talking out loud to myself hoping one day she’d chime in. Hurricane Sandy had brought Pepper into my world. The incredible wind and misty rain on this turf field had somehow counteracted the storm swirling in her mind, creating an equilibrium where the two of us for the first time in her life shared the same place at the same time in this world.
I hugged Pepper tightly and then jumped back to my feet, both of us returned to sprints around the turf field. She raced endlessly back and forth across the field. My attempts to keep the hood of her raincoat up proved futile. Her hair was soaked, draped around her raindrop tattered face. We ran a few more Hurricane Sandy wind sprints across the field, and I didn’t want the moment to end. It might never happen again.
Her clothes dripped and I thought I could see some goose bumps on her neck. The time had come to return home and warm up. I dropped down to Pepper’s level again, and she looked me in the eyes. I said to her, “It’s time to go, I love you Pepper, thank you!” Feedback, thank you Pepper, that’s what I needed. For many Americans, Hurricane Sandy would prove to be an awful day, but for me, Hurricane Sandy was a great day, one of the best in my life. It was the feedback I needed to keep going as an autism parent.
* * *
Today is April 2nd, National Autism Awareness Day. If you’re not familiar with the growth in autism over the past couple of decades, then you’ve had your head in the sand. Today, I offer a different awareness message. People don’t get autism, families do. As noted in Steve Silberman’s book Neurotribes, autism was defined by Leo Kanner in 1943 coming from the “Greek word for self — autos — meant to explain how those afflicted with the condition seemed isolated and alone in their own private worlds.” Autism doesn’t just isolate the afflicted person but all that care for them as well — parents, grandparents, and other caregivers. We, like our children, suffer from autism, isolated from the world around us.
Some isolation can’t be avoided. Autism parents self-isolate in many ways to avoid pushing our child’s symptoms into others’ environment. We avoid taking our kids out in public on bad days. Even on days that start off right, we’ll quickly flee the scene should an autism meltdown erupt. But, society isolates us too. We don’t get invited to events or birthday parties. We understand in part. But even at the playground or at a restaurant, the world seems to not want us to integrate.
Just because our child doesn’t talk or behaves differently doesn’t mean they don’t listen. It doesn’t mean they don’t enjoy the company of other children. Parents don’t have to retrieve their child from our kid’s orbit just because our autistic child doesn’t talk back. When another child interacts with our child, it can really help our kid become less autistic. If it’s a fear of autism that causes parents to seek refuge from our children, remember that autism is not contagious. If parents avoid our children because they can be a bit overaggressive at times when they see something they want, please understand that autistic children are not normally manipulative or trying to hurt anyone. They just don’t feel pain nor understand boundaries like most do.
For those that do try to engage autism parents, thank you. We appreciate anyone speaking to us at all. Often times, our only other interaction with parents comes with other autism parents in a variety of support groups. These sessions are well-intentioned, quite useful and a great resource. On those rare breaks, spending even more time further discussing your child’s autism can also be exhausting. Treatments, resources, diagnoses, remedies, I’ve found these autism parent sessions both helpful and depressing. They become reminders of how you are not doing enough for your kid or how little progress your child is making compared to others. Instead, I believe most autism parents welcome the chance to interact with ‘mainstream’ parents and topics other than autism. It would be nice to know what the rest of the parenting world is like.
Another way ‘mainstream’ parents can help autism parents is by not trying to solve our child’s autism. I know you mean well, and you are probably uncertain or nervous about what to say so you default to trying to help. Yes, we’ve all seen the Temple Grandin movie and she’s an absolutely amazing person, a one-in-a-million, and an uplifting story from an inspiring lady. But, our autistic kids are not likely to be one-in-a-million, will never be Temple Grandin and repeatedly hearing about how our kid “could turn out to be the next Temple Grandin” makes us even sadder. By the way, our kids are also not master card counters like in Rain Man either. We appreciate your story about how your cousin’s neighbor has an autistic child that was miraculously cured when they switched him to an all goat cheese and flaxseed diet for three months. Please don’t take offense when you learn that we are not likely to undertake this experiment or even look into it. We are just trying to get from wake up to bedtime each day. When our doctors suggest treatments, we’ll take note.
All we ask as autism parents when we meet you is to treat us just like everyone else and try to tolerate any outbursts from our children as best you can. As Pepper’s gotten older, I’ve had a lot better public support from other parents as indicators of her autism have become demonstrably different from other kids her age. I’ve had parents step in to help at restaurants or the grocery store when I’m clearly overwhelmed. They didn’t comment about autism, they knew I was struggling, and I thank them for offsetting my early experiences with the P.O.M. Along with them, my West Point college classmates and fellow Army alumni have repeatedly rescued me from the autism blues — a community that seems to have incidence of autism and other birth defects in our children far outpacing mainstream society.
Lastly, parents can help us out by helping support our programs. Services are key for autistic children to improve. Pepper has been lucky to live in two states, Massachusetts and New York, which offer excellent support to people with disabilities. As a parent, I’ve been fortunate. But for many this level of support is atypical. Autism parents living in rural areas or states with poor education systems often times have little support. Programs are limited, resources tight, and experienced professionals able to treat autism rare. Early intervention programs are essential for developing fully functioning adults with autism, able to live and work on their own without depending on state resources. Cutting resources for childhood autism ultimately increases the financial burden on states as autistic people reach adulthood. Please support your local autism programs. Tell your state and local officials that these programs are important to you, even though you do not have an autistic child. These programs are invaluable to us autism parents and our children.
Finally, Hurricane Sandy was a great day for me; the first time my daughter showed me real, sustained feedback, the kind most parents probably take for granted. A day of dark clouds shined just enough light into my world that I believed things would be better someday — and they are! While she’s not like most seven-year-old kids, Pepper now provides me feedback all the time. She smiles when I come into the room, brings me books and toys when she wants me to play and will take my hand, unprompted, when we walk down the street. I know she hears and understands what I’m saying. She now looks me in the eyes routinely the way she did that day on a turf field in Boston. Her feedback during Hurricane Sandy got me through the hardest days of being an autism parent. Thanks Pepper, you were there for me when I needed it the most. I love you and I’ll always be there for you!
A short iPhone 1 video of Pepper during Hurricane Sandy — October 29, 2012