The chaos and mania of parenting a child on the spectrum

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Whose the one without social skills?

The irony never ceases to amaze me that the people least likely to accept “diagnoses” are the very people who should be given one. “How do you really know?” I have had many of these people ask me, in a very cynical, droll. “Observation,” I want to say, narrowing my eyes in a meaningful way.

Autism diagnosis may be considered new, but spectrum disorders are certainly not. I see them everywhere. The way that kid saw dead people. The way the Wayne’s brothers saw stupid people. I see a lack of social awareness in so many of the adults that I meet that I sometimes wonder if my daughter isn’t on the spectrum, but is just so highly sensitive to other people’s crazy that it makes her afraid to interact with anyone. It certainly does for me.
This past Sunday greeted me with such a strong dose of self-centeredness by another mother, I felt the need to slap her, (of course, in anger), but also as a form of social service. So that she could be aware that someone existed outside herself. The target of my unsolicited face slap, was not just a mother, but the mother of a boy on my son’s team, and a pregnant mother no less.

I had just ushered my very wild child out of her bed, and the comfort of a lazy, warm, last week of summer into the frigid foyer of the hockey rink, where she was forced to meet her arch nemesis: the Boar’s Head ham sign in the rink cafe. The sight of it makes her gag and retch on the floor. She also gags at the sight of precious moments’ dolls, miniature pink baby-dolls, and her brother’s embryo-like jellied alien he got from the gumball machine. Do you see what I’m saying? There’s an intuitive wisdom here.

However, it makes watching her brother’s hockey games an impracticality, as my very wild, sensory laden child was refusing to sit inside the rink where it is frigid cold, or in the dreaded café with the eyes of the dreaded Boars head ham bearing down on her. I had only just entered the rink and turned the corner, when she froze in her tracks and disappeared in a fugue like state of terror. We used to think these were possibly seizures. We are still not entirely sure what is happening. Sometimes her processing disorder, whether visual or auditory, simply requires so much effort to understand something she is looking at or thinking about, she will appear to stare into space. Other times, she is literally frozen, her brain terrified, in a state of such panic that she cannot think or move.

She certainly didn’t register the gaggle of middle aged mothers huddled together yakking away about back to school sales and carpooling. One of the mothers, who I happen to understand works as a teaching assistant, smiled and said hello to my very wild child, who was pushing past my leg and staring into the café with urgency.

This mother smiled gently, and took the lack of response without personal insult or reprieve, but saw it as it was, understanding that it is much more important that she deliver the kindness than to receive it. That on some level, (we are discovering on many levels), the message was processed and received, even if wasn’t responded to.

The pregnant mother, who happens to be the youngest, but also the mother of two boys, also turned to give myself and my daughter and overly enthusiastic greeting. Smiling widely and bending over to speak loudly and concisely, as if my daughter were not socially impaired, but deaf. I most certainly appreciated the effort and the emotions that follow when my daughter ignores such interactions are always embarrassment and sadness, and not anger at the other person. Although, when the person seems to have the expectation of a response, it is hard for me not to feel resentment. As if they are setting us up. It ceases to be a kindness and instead a test, of sorts, that both I and my daughter have failed to pass.

When my daughter kept staring into the crowded abyss of the café without responding, the woman turned to the mother she had been gossiping with and explained to her that she had an autistic neighbor who responds the same way when people approach him. And then she waved her hand in front of her face to demonstrate his glazed over expression.

She did this while I was still standing there with my mouth open, waiting for my daughter to interact. While my daughter was standing there in plain view. In ear shot of her. She did this in front of the two other mothers. Mothers I will see every weekend for the next eight months.

I can only describe this as surreal. As I stood there, trying to figure out what to do, as my daughter’s body was pushed against me in what I recognized as a fight or flight response I have come to recognize, I felt guilt. Guilt for forgetting to prepare her for the Boar’s Head ham, for failing, once again, and allowing myself to regress into a comfortable state of normalcy I continue to feel entitled to. A normalcy others take for granted. Now I had the same internal state of panic surging through my own body: racing heart, shortness of breath, difficulty swallowing, sense of panic, overwhelming sadness, and the need to fight or flight.
It seemed unduly cruel that this mother just turned away from me as if I no longer existed. Just turned her side to me, after waving her hand cruelly in front of her face, and went on to talk about organizing her closets, as if there weren’t a mother and child standing next to her in crisis. It is unrealistic to expect that she could understand the state of duress that my daughter’s little mind and body were experiencing at that moment, let alone mine, but it is sad. It is sad because if anyone should be capable it should be that mother who was at that moment growing a life, and nourishing the complexity of dendrites and axioms and neurons that would make her child capable of the very small, simple action as a hello.

Clearly, she wasn’t capable. She didn’t even understand the hurtfulness of her actions. She lacked the social cues and most certainly the empathy. So when people ask me over and over, how I can possibly know or understand what my daughter struggles with, or what her diagnosis is, I can only shrug and say, “Observations.”


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Everyone should have a little spunk


Our very wild child teaches me something new everyday. Sometimes, in one day, she can teach me two diametrically opposed things. And they can both be true.

This past mother’s day she taught me this: It’s good to have a little spunk.

Since we were already out-brunched from Easter, I voted to take our two sons and our “somewhere on the spectrum-of-things” daughter for a short drive to Bushkill Falls in the Poconos. I worried how well she would do on the hike. I worried that taking a child with such an obvious lack of gross motor skills and coordination was quite a negligent thing to do on, of all days, Mother’s Day. I had visions of her losing her balance and plummeting off the side of one of the rickety wooden railings, or of her melting down half way through the hike, dangerously flailing at the peak of the falls. My memories of Bushkill were a mixture of New Jersey and Pennsylvania families, crammed together on narrow paths, along with crowds of New Yorkers. I imagined my daughter throwing one of her legendary tantrums at the precipice of Bridal Veil Falls, while a line of irritated Manhattanites grumbled behind us, being shafted out of their yearly dose of planned nature. At least they would be used to the occasional crazy person. It even crossed my mind that we could possibly end up stranded at the top by the falls, unable to move her heavy stiff body as she kicked and flailed on the ground, demanding to get in the car. They would have to fly in park rangers by helicopter to get us out. I could picture it on that weird bit of news that sometimes pops up on my phone. ‘Parents stuck at top of waterfall with Aspergers daughter.’

Or, I thought, it could work out. She might love it. As she often does, I reasoned that she just might surprise us and have more energy than the rest of us. She has a surprising amount of resolve for a child who is exhausted by the mere act of putting on underwear. Besides, I am learning to adjust to my daughter’s wild and ever-changing moods, and the best way to do this is to be prepared for anything. With kids like my daughter, priming is everything. Besides, we had made this trip pre-kid with our obstinate overweight beagle, and we survived. We, meaning my husband, had been forced to carry his tubby, obstinate hind the last thirty minutes, but we had made it. I was determined we could do it with our very obstinate, wild child.

The fear of plummeting off a mountain side may have derailed a normal person; but it is not for nothing that the wild-child is mine. When I have an idea, it sticks with a single-focused determination that a bull could not dislodge. We were hiking. And, as many with children on the spectrum know, tantrums and tumbles are something I’ve grown to expect. Like earthquakes to a Californian. You just kind of hold on tight until the tremors are over, and then get on with your day.

The trouble soon began. In the line.

Our Wild Child hates lines. She hates waiting. I know, I know…who doesn’t? There annoying. They make you antsy. They make your muscles twitch. They make your skin itch. And sometimes you feel like you want to scream at the person in front of you to hurry up. And she does.

“I hate these people. I hate lines. Ya jerks,” she says, with a New York accent, for some reason, though I lost my own years ago, (or so I thought).

This embarrasses both her brothers, who start pulling on her shirt, or try grabbing her into a bear hug, (but knowing better than to get their fingers anywhere near her mouth). She will then will pinch and also call jerks.

She began repeating this over and over, with a crazed jerking of her head. Sometimes I think she is even aware of the absurdity and empowered by it. I swear if I had remained a Catholic, I may have tried to have her exorcised by now.

I could feel the heat start to crawl up the back of my neck, and my face begin to flush. As is my habit whenever we are out in a public situation, I  assess my surroundings. I look for quick exits. I find the closest bathrooms or possibilities for urinating outside. Like my husband’s astute eye for cash machines and gas stations, I find possible places to escape for meltdowns. I also assess the crowd for judges and other children behaving even remotely odd. I’ve become quite good at identifying other children on the spectrum, and even those with slight delays in motor skills, or even those who are just plain difficult to deal with, or slightly off, or some who compulsively pick their nose. Believe me, I will notice. And be relieved. Even if there parent’s don’t get it, I can live with the calm that their child has a nose picking problem and they don’t even know it.

I looked around, assessing for friend or foe. Sensitive to my daughter’s acute sensory needs, I have become like a wild animal, taking in dangers in the form of smell, sight, or sound. Once my daughter threw up at the mere sight of a boar’s head ham sign. I have learned to guard against these dangers.

Approaching the admission line we see an Indian woman just exiting the trail. My daughter pauses at the entrance and begins yanking on my arm and screaming that she wants to hike. The Indian woman glances at my daughter and smiles. She sees nothing wrong. My daughter could be any other young child, anxious to get on with the fun. Indeed, she is a beautiful child, with a full face and a full head of beautiful brown hair, though its severe tangles often border dangerously close to a state of Rastafarian dreadlocks. Other than this, she appears absolutely common.

The woman was wearing the most beautiful, teal silk sari and silk pants, and it struck me that on her feet were a pair of bright purple Reebok sneakers. Of course, I’m not sure what type of footwear it expected her to be wearing on a two half hour trek uphill to spot a waterfall, but the quirkiness of it made me smile. It was oddly comforting. I was too busy staring and my wild child started yanking impatiently on my arm with the full weight of her 60 pounds, saying with viciousness, “We have to GET going.”

The Indian woman smiled at me. “She is ready,” she said proudly, as if they were two like-minded spirits. The girls with spunk, both colorful and seemingly at odds with themselves.

Next off the trail passed another elderly woman in track pants and runners, looking more fit than I had since before kids. She was wearing a fanny pack and fluorescent sunglasses, and a hatless visor, looking resolute and nonplussed and not the least bit concerned with any of us. There goes another spunky one, I thought.

We got into line and there was a young couple behind us. I assessed them as newly dating. She was wearing optimistically bright yellow shorts, along with heeled sandals, I kid you not, and her boyfriend stood there unassuming in a floppy, hiking hat. Amateurs. The helicopter is not coming for us, I thought smugly. Still, they looked freshly sun-screened and well-rested, and I begrudged them their freedom and optimism. They wouldn’t get our problems. So I didn’t really need to care. Even though I do. Even though I see her take glances at my daughter and know that she thinks that their kid will also be sun-screened and wait patiently in lines and not wipe snot into her forehead with the back of her palm. I want to tell her she is wrong, and advise her to freeze her eggs. But I can’t, because suddenly my daughter wanted to hit the man in front of us.

The man didn’t notice, thankfully. He was immersed in conversation with his son. He was wearing a shirt with a camouflage background advertising some kind of hunting company, which made me feel the need to observe him carefully to decide whether he is the type to use mother’s day hikers as target practice. Also, I suppose, that I am the judgmental one. To my credit, I have to keep an eye on him, so that my daughter doesn’t kick him in the groin. I am holding her shoulders and wincing, but trying to make it look like I am smiling. “Isn’t this fun?” my face was telling passersby. I looked like a crazed female version of the joker.

I wonder about the man and his son and their hunting pastime. Everyone has their unique hobbies. Their singular interests. Their odd idiosynchricities. I wonder which one my very wild child and I will share one day. Maybe when we get home we will purchase a pair of matching purple Reeboks.

Just about that time my very wild child had become incensed with the waiting and began jerking her head around and screeching, “When are we going to get there?” which I know is build up to no holds bar freak out. My oldest son is beginning to look pale in his face, letting his hair hang in his eyes, and talking to me in the tense way has through his teeth. “Mom, she’s going to freak out,” he says.

Unable to restrain her and, say, tape her mouth shut, I tried the next best thing and started to distract her by pointing out the family ahead with a pet Yorkie wearing a skirt. “Look at the cute doggie.”

“I hate them,” she says. And then she really yells for me to stop speaking in her ear.

A few people turn around and stare.

For some reason I always end up laughing nervously and smiling is going to somehow downplay this. “Isn’t she silly?” I want to say. “Kids say the darndest things.” Though inwardly I am ready to crawl into a hole, I usually end up leaning down and whispering for her to be quiet and plead with her that people are staring at her. As if that is going to make her “hate” them any less. They are taking too long and they’re staring at her. I spot the Indian women in her Sari and sneakers leaving the gift shop next door with her family and composed granddaughter. I assess her to be about four, several years younger than my wild child. She is composed, -, alert, patiently waiting for her family, and dressed impeccably in purple shades and purple sun hat. She is cool as a cucumber, and surprisingly American looking next to her traditionally Indian elder. I feel the familiar combination of embarrassment and envy. Irrationally, I think that maybe if I were Indian my child would be better behaved. Maybe if I wasn’t one of those rash, crude, overindulging Americans, she wouldn’t be screaming, “I hate lines, I’m going to kill the line.”

Maybe we should move to India.

My son tugs on my shirt. He is quiet and self-conscious, and absolutely mortified at poor behavior. It is a bizarre reality that they have emerged from the same womb, expelled into the same world, co-existing in the same household through some chance of genetics and time.

“Mom,” he says, through gritted teeth, “She is embarrassing.”

I look at my husband pleadingly, but he is busy examining the map.

“It’s taking too looong,” she shrilled. “Whyyyy…IS…IT…TAKING TOO LONG,” she said, with her voice deepened, for the life of me, like a transsexual who has just started hormone therapy.

Luckily, this made both my son’s laugh.

“What the hell?” I mouthed to my son. I did this once accidentally, when she had thrown herself inexplicably into the street, and the phrase had stuck and become a running tension tamer. I probably shouldn’t say, “What the hell?” to my nine-year old son, but this is the least of my problems. And, unfortunately, they’ve heard far worse.

My wild child swung her arm out like she was going to attack the hunters.

“Woah, Mom, she’s acting crazy.”

I looked around.  I assess my surroundings.  I check for exit strategies, possible victims of my daughter’s flailing limbs, accusatory stares.  Friends or foes.  Gathered around the ice cream stand, I can see the colorful Indian family in their saris and athletic shoes, seemingly unaware of the dichotomy they present.  A family who, without irony, dresses their Yorkie in a clown skirt, a family that advertises their love of ammo, and a woman who hikes in heels.

“Sweetheart,” I told him. “Nobody here cares. Nobody is paying any attention to us.”  He looks at me skeptically.  His eyebrow raises at the crowd.

“That family put a skirt on their dog,” I say quietly.  I make a wide circular gesture at my head.  “Cuckoo,” I sing.

My son leans protectively into my waist and begins to laugh. I breathe a sigh of relief.  It is the common signal of crisis diffusion.

“And you know what they see when they look at us?” I ask him.   We both look at his sister who is jerking her body maniacally and repeating, “It…is…taking…too…long.”

I gesture to his sister and make wide circles at my head, “Cuckoo.”

Maybe it is wrong to call one of my children cuckoo. Though let’s face it, we’re all a little cuckoo from time to time.

Suddenly my son’s shoulders started to relax. He stops talking to me through his teeth. He looks at his sister and laughs. With love.

“You dumb jerk,” she mutters. She is a special kind of cuckoo. The kind with a little extra spunk.

“Look, Babe, the line is moving.”