I can tell you about fifteen hours a week of therapy.
I can tell you about speech delays, sensory processing disorder, language processing disorder and social anxiety.
I can tell you about impaired motor skills and cognitive abilities impossible to assess.
But, that doesn’t really tell you anything about what it’s like to know Helene. It tells you nothing of her personality, her sense of humor, her emotional intelligence or her potential. It tells you nothing about what her autism is like. It simply reduces her to sound bites and statistics. Without a doubt, her life follows and will continue to follow a road less traveled and perhaps bearing greater obstacles. But, she is not “lost” or “damaged” or “diseased” because of autism. Before any other adjective, Helene is human. She is love. She is a daughter. She is a sister. She is a niece, cousin, granddaughter and friend. I don’t spend my days trying to “cure” her; I spend my days learning to understand her, trying to see the world through her eyes, and helping her navigate a choppy and uncertain sea.
Our autism is a seven-year-old girl wearing Hello Kitty pajamas who wants to be a flower and live in a forest when she grows up. This is a little piece of her story.
The alarm chimes, and I search the nightstand for my phone with the palm of my hand, patting … patting … pat – …
The chiming stops when I tap the screen with as much vigor as I can muster at 6:30 am. I greedily sink back into my nine-minute snooze, but a small, heat-seeking appendage jabs itself, toes first, into my calf. Momentarily, I am disoriented. Am I in an oven? Is the house on fire? Have I woken on the surface of the sun? I launch the blankets off of me and suck up the cool air until I’m certain steam rises from my abdomen. As my eyes adjust, I realize — nope — still in bed and house flame-free. The sauna-like humidity comes from the four-foot long human furnace velcro-ed to my side.
Helene grumpily pulls the blankets back toward her and covers her eyes, blocking out the morning sunshine that glistens through the bedroom window. The birds outside chirp away with an enthusiasm that makes me consider whether worms for breakfast is a sensible choice. It is early, and I am tired; but, the instant gratitude engulfing me as I remember that it is summer and that Helene can continue to sleep propels me from bed and down to the coffee pot. The protein bar I eat while waiting for said coffee causes me to ponder the worms again.
I typically wake next to a human who is considerably larger and scruffier (although probably not less … warm), but Papa was relegated to Helene’s bed last night, because her sleep didn’t deepen enough to move her from our bed to hers. Helene never learned to fall asleep on her own, and that’s our doing. Self-preservation caused us to let her fall asleep in our bed – sometimes after we fell asleep – and now that’s the routine. Mostly, it’s worked out. Except, you know, when it hasn’t. Anyway, it’s not really bedtime that’s the problem. It’s morning, which comes reallyfast when you don’t fall asleep before midnight.
Helene’s internal clock is not wired to accommodate Mama or Papa’s work schedule or a school schedule for that matter. From birth she was a late riser and a night owl. I was convinced she would be the opposite, because she was born at 5:30 a.m. Apparently, though, she came out at that hour because she was ending her day not starting it.
All joking aside, if an alarm or an insistent parent wakes Helene before she’s ready to wake, the resulting sensory explosion is immediate, severe and spectacular. We’re not talking the typical-kid whining about not wanting to get up or begging for “just a few more minutes.” The blast radius for this unwelcome intrusion covers at least two blocks and three octaves of crying and frustration, hyperventilation, vomiting and a sincere worry that the neighbors will call Child Protective Services. Even if Helene achieves a relative calm without falling back to sleep, what follows is an inability to function for the rest of the day and the trigger of a late-day napping cycle. We win the battle to get Helene to school on Monday by 7:50 a.m. only to lose the war for the remainder of the week as Papa and I sleep in shifts and cook frozen pizza at 3:00 a.m. for the kid who thinks it’s dinnertime.
If, however, left to her organic sleep patterns, the result is drastically different. I’m greeted with a, “Good morning, Mama,” and the remnants of whatever dialogue danced through the recesses of her grey matter before she crested her last REM cycle. Some days, I even get a hug or a gentle pat on the cheek.
Today, Helene wakes a little after 9:00 a.m. She’s chatting away to herself. Lately, she’s taken to singing the melody of a song she knows but changing the words to repeat a familiar situation. Today’s song is a mash-up between something from The Backyardigans and a trip we took to the zoo a couple of weeks ago. It’s as close as Helene will get to spontaneous (non-memorized) speech, and I’m enjoying it immensely. I don’t really want to interrupt it, but neither do I feel like washing the sheets.
“Did you do Step 9?” I ask. “Step 9” is “Go to the bathroom.” About a year ago, we developed a bedtime routine that covers ten steps that carry us right on through to morning.
“You sure do,” Helene responds as she slides out of bed and wanders sleep-drunk toward the bathroom. Helene was almost six before she finally worked out the body signals needed to successfully toilet. She’s been a rock star at it since, but she will hold it until the bitter end. There are a lot of possible culprits here. One is that she just does not recognize the urge to go until it is URGENT. Another might be a need for control; there is a lot about Helene’s daily being that is out of her control (such is the nature of being 7), but whether anything goes into or comes out of her body are two things that pretty much only she can dictate. Another might be the intensity of her focus. When she pays attention to something, she often does it to the exclusion of all else, including a bladder screaming, Evacuate! Evacuate! Evacuate!
When Helene reappears in the bedroom, she announces, “Step 10, please.” “Step 10” = “Time for breakfast.” She then collects her blankets and a beach bag filled with her “friends” – a collection of Ty Beanies: Muno, Foofa, Toodee, Brobee and Plex from Yo Gabba Gabba and Pablo, Uniqua, Tasha, Austin and Tyrone from The Backyardigans. She drags this mosaic of plush madness down the stairs to the living room, plops herself on the carpet and braces herself for the day. Even during summer break, Helene has therapy six out of seven days a week – speech, OT or ABA. Typically, today would be ABA therapy for four hours. But, Helene’s therapist is not coming today, and we have other plans. We’ve been invited to a birthday party.
This doesn’t happen often, so we are excited – and a little nervous – about how this will go. Birthday parties are one of those things that parents of typically developing children take for granted as part of growing up. But for autistic children, parties can be fraught with challenges. If autism presents – as it does in Helene’s case – with sensory sensitivities to noise and light, a crowded room full of the cacophony of 10, 15, or 20 kids is not ideal. Add to that the madness of places like Chuck E. Cheese or SuperFranks, and there’s a good chance we won’t even make it in the door. But, this assumes Helene is invited to parties at all. Helene spends most of her day in a special education classroom with kids who are also on the spectrum; like Helene, many of her peers don’t have birthday parties except for the quiet kind at home with friends and family who have realistic (and flexible) expectations. Helene spends much less time in the general education environment, and given her limited verbal communication and her confusion by or fear of social situations not facilitated by an adult, she is especially challenged by making friends. The older Helene gets, the more her “differences” from her peers become apparent, and the greater the obstacles. We are so grateful that Helene’s school peers have never been unkind to her. But, the reality is that Helene doesn’t quite know what to make of other kids and – at seven years old – they don’t quite know what to make of her either. The confusion prevents relationships needed to foster things like birthday party invitations and play dates from developing, and we worry a lot about what that will mean for her later in life.
Today, though, there is an invitation, so on to Step 10. Breakfast is the same every morning: Gerber oatmeal blended with fruit puree. Yes, that’s right. My seven-year-old still eats baby food for breakfast. I think there is an excellent chance she will eat this same breakfast at 27 and 77. I ask you: so what? In fact, this was my first “so what” moment as the parent of an autistic child. It’s a perfectly nutritious breakfast. It’s the easiest thing ever to make. It gives her daily practice using utensils. She actually eats all of it. And, frankly, the only reason not to let her have this breakfast is because I’m worried about what other people might think about me as a parent for letting her have it. Well, why should I? Unless you’re coming over to make her breakfast every morning and navigate the consequences of that, I DON’T CARE, Judgy McJudgerson. Except that I care enough to tell you we did try lots of other things – traditional oatmeal, eggs, cereal, pancakes, fruit, cold cuts, etc. Ultimately, Helene adopted only two other breakfast foods: hash browns and bacon. (If her food aversions caused me doubt about her genetic relationship to me or to her father, the love of bacon and carbs quashed it right then.)
After breakfast, Helene busies herself on her iPad or the computer. About two years ago, Helene stopped watching anything on television except baseball. The upside of the baseball preoccupation is that Papa and I are perfectly willing not only to indulge but encourage this, because we are huge baseball fans ourselves. The downside is that baseball broadcasts come with commercials that were conspicuously missing from some of Helene’s earlier channel choices. Helene by and large communicates via “scripting” – a form of echolalia or repeated speech. This means memorizing phrases (or entire monologues) then repeating them – often in the correct context. Scripting helps Helene to communicate a need or want. For example, I asked Helene one afternoon whether she was hungry. She replied, “I’m famished. ‘Famished’ means you are really, REALLY hungry!” Thank you kindly, Endless Reader. Frequently, though, scripting means we drive around town with an ad agency in the backseat. As we pass the gas station: “Chevron with Techron. Care for your car.” As we pass a pizza joint: “Mountain Mike’s Pizza. You’re worth it.” As we pass a car dealer: “Toyota. Let’s go places!” McDonald’s will be sad to know that “I’m lovin’ it!” never really caught on with Helene; she sticks with frenchfrieschickensapplesmilk as her slogan of choice for the Golden Arches. I can say confidently that you just have not lived until you’ve strolled through the grocery store with a kid shouting, “He hits it deep! He hits it long! It’s … it’s … OUTTA HERE!”
After breakfast (which is practically lunch by the time we get it together), we head out for the birthday party. Things go awry about two miles from the house.
Helene has an uncanny sense of direction. She will tell you to turn left or right based on where we’ve told her we’re going, and she is almost always accurate. Except today – today we’re going to a different place than she thought. Of course, I didn’t and couldn’t know this, because she cannot tell me where she thought we were going. This type of miscommunication happens to us often, because Helene does not deal in generalities. I usually know better than to ask things like, “Do you want to go to the grocery store?” because Helene will agree and think we’re going to Safeway. I, however, mean we’re going to Sprouts. When the car does not go to Safeway, we have big, big problems.
Today, I know my mistake nearly instantly. I told her “birthday party,” but I should have told her the name of the place we were going. I don’t know what place she associates with “birthday party,” but it was NOT in the direction the car pointed. As we pass the turn she expects us to make, she starts to panic and yell. To a casual listener, I know she sounds like a child having a temper tantrum. I thought it myself until I knew better. Years wiser, I can hear the panic in her voice, and I know that as she sits strapped in a car seat in a moving car, having no idea where she’s going, she feels trapped and – what I fear most – is that she feels betrayed. All I can do is offer her assurances: we’re going to a party; you like parties … the party is at the park; you can play … no school and no therapy, only fun. Finally, I tell her that we are going just to try it. If we get to the party and she doesn’t like it, we can leave. And, I mean it. I’ve learned that I have to offer her meaningful choices or she won’t trust me. I encourage her over and over to find her calm and promise her it will be okay.
We arrive at the park, Helene’s panic reduced to a whimper but nonetheless hanging over her like a dark cloud. Of course, the park is full of birds because – outside, yo. Birds are Helene’s kryptonite. They freak her the hell out. We don’t entirely understand why, but the fear is real and powerful. Our best guess is that birds move suddenly and unpredictably, which Helene finds unnerving. Her fear is strongest with black birds, like crows, but even little finches and hummingbirds can trigger her flight response. Also, it’s a windy day, and Helene doesn’t like the way it feels on her face or sounds in her ears. Still, we walk slowly into the park and find a seat on a bench. I have a firm but gentle grip on her arm; she will bolt away from me if frightened enough and in her fear she will not think about dangers like cars, ledges, curbs or other injury hazards.
“You want house,” she implores me as I sit her on my lap. Despite all the years of speech therapy, we cannot seem to shake the pronoun confusion that invades Helene’s speech. I know what she means, though. And I know she means it, because she’s giving me full, unblinking eye contact as she says it.
“I know,” I tell her, meeting her eyes and brushing her hair from her face. The birthday boy’s mom hands Helene a cup of juice, which she takes. I am grateful that, in this particular moment, the parent watching this unfold also has a child on the spectrum. I don’t have to explain any of what she’s seeing and if, in the next 30 seconds, we say our goodbyes and head back to the car, there will be complete understanding and no need for apologies. This solidarity brings me a calm that helps me help Helene. I’ve read the findings of some science-y types that autistics lack empathy. Perhaps some. My daughter is not one. If anything, I find her feelings frequently extend from mine: If I worry, she worries. If I am sad, she is sad. (Don’t get me wrong. There are definitely crossed signals. Like the time she full-on kicked me in the shin then laughed when I dropped to the floor from the pain of the million-watt jolt of electricity she sent up my leg.) Right now, as she’s sitting on my lap, I’m certain my calm is feeding hers. Just try.
Helene sips the juice and watches two boys playing near us. One of them squirts the other with silly string, and Helene giggles a little. Given the opening, I offer: “How about we sit here on the bench for a minute? You can stay on my lap and finish your juice, then we can go.” Helene doesn’t say anything to me, but she sips the juice again and makes no effort to get off my lap. Just try. Then, suddenly, she’s off. There is a basketball court below us, and she couldn’t resist its gravitational pull. Eventually, she explored the cement slide (and took the road-rash burn it gave her on her arm in stride) and the swings. She did her best to ignore the birds. She made it about thirty minutes before announcing, “Time to go!” Just try.
Living with autism is sometimes a challenge. But, it is a life, and it is without a doubt a life worth living. We live in slower motion. We pay closer attention to detail. We take less for granted and more in stride. It is every day committing just to try.