There is a LOT of routine in parenting an autistic child. But, don’t let that fool you. Routine ≠ predictability.
Take today, for example. (Please.) There is a nail hole in the wall above my bed. It’s been there since the day we moved into this house, which was years before Helene was even born. (Look, this isn’t about my to-do list, okay? Quit judging.)
It’s not particularly big or all that noticeable. But, ever since Helene was able to stand on our bed (which has been for several years), she would get on her tip toes and stare at that nail hole in complete (but silent) fascination.
This afternoon, I sat here at the computer, enjoying the fact that I had absolutely nothing I had to do today. (Never mind that I have seven unfinished blog posts pending. Never mind the three piles of laundry on the floor or the baskets of clean clothes yet to be put away. Never mind the mess upstairs in Nate’s room despite (or perhaps because of) his absence. You smell what I’m saying.)
Helene is upstairs playing, and I’m putting a decent dent in my Safari Reading List. Suddenly, I hear the most painful cry with the words, “OH NO! IT’S BROKEN!” I shot out of my chair and up the stairs so fast, I think I left one of those colorful but blurry trails in my wake. When I got upstairs, I fully expected to find Helene’s leg all Joe Theismann-style or some other such calamity.
I thoroughly examine Helene as she tearfully shouts “FIX IT!” and “IT’S BROKEN!” I find no bumps, no (new) bruises, no bleeding, nothing broken.
“What’s broken?” I ask, scanning the room for some obvious sign of damage. She’s in full melt down, so she can only repeat my question now; she can’t answer it. Nothing is jumping out at me as “broken,” so I say. “Show me.” I’m hoping she will – literally – point me in the right direction. She does, accusatorially thrusting her extended index finger toward the nail hole. “FIX! IT! FIIIIIIIIIIIIIIIX IT!!!!!”
I would like to say that I did not laugh at her. I really would. I would feel so much better were that true. She was obviously in very, very real distress, and I would never, ever mock my daughter. But, my relief that the nail hole was the cause of her crisis — as opposed to the ER visit I girded myself for before my foot even hit the bottom stair of the staircase — wouldn’t let me stifle my chuckle. The look on Helene’s face confirmed that this particular one of my reflex responses does not endear me to her. Not one little bit.
I straightened my face into sincere concern. “Oh, honey,” I said, “the wall is not broken. The hole has been there a long time. It’s always been there. It’s fine.”
“FIX! IT! MAMA!” I may be imagining this, but I’m pretty sure she also said, “OR ELSE.” I’ve seen “or else.” I do not like it.
I lumbered down the stairs and into the garage, hoping and wishing with all my being that there was somewhere out there a container of spackle that wasn’t completely dried out and that I could find the right tool so that I wouldn’t be spackling with a cooking spatula. Miraculously, I located both. However, it took me about 10 minutes to locate these items in the garage. By the time I came back into the house, Helene was downstairs on the couch, eating the pizza I made for her. No mention of the nail hole. Just, “Mama, Goofy’s Petting Zoo, please?”
I snatched the remote control of the couch, and put on her show. Exasperated, I trudged back upstairs and spackled the nail hole. At least it’s off my to-do list.
I tell you this story to give you context for our Fourth of July.
First, Fourth of July is the Hubs’s favorite holiday – not because he’s particularly patriotic, he just really loves the fireworks. The bigger, brighter and louder the better. If you want to see what someone’s face looks like after you kick his puppy (without actually having to kick a real puppy), take him out on a boat in the San Francisco Bay to watch fireworks, and let the thickest fog EVER roll in about 5 minutes before the fireworks start. (I know, I didn’t see that coming a mile away, either, right?!) That look you see on his face, as he’s standing there staring at fog changing color like some vague memory of discotheque lights dancing in his retinas, is the puppy-kicking look.
When Helene was two months old, we took her to Disneyland with Nate, my best girlfriend, my two god-daughters (her daughters), my mom and my girlfriend’s mom (my “other” mother). I mean, doesn’t EVERYBODY go to Disneyland two months after giving birth, when it happens to be the dead of August and the hottest fucking week in the history of hot? No? NO?! Thanks a lot, Phil Simms. Bastard.
While we were there, we somehow finagled more or less front-row seats for the fireworks. Disneyland doesn’t do anything half way, so this was quite a show. It was also ridiculously loud – almost painfully so. Helene fell asleep in the middle of it. I mean sound asleep. The kind of sleep that made me pinch her so she’d make that constipated face that let’s me know she’s still breathing. She was so asleep, in fact, that everyone sitting within a five-foot radius of where we were was astounded. Except the Hubs — he was not impressed. I think he was actually a little disappointed that Helene’s apple was not gonna be sitting right next to his tree on this one.
For a while, Helene’s reaction to fireworks pretty much remained one of ambivalence. But, the Fourth of July that followed her third birthday completely undid her. We were sitting on the lawn of a local park, watching a decent fireworks show in our neighborhood. When the first few went off, Helene was fine. They were small, the explosions weren’t all that loud, and she liked the lights. Then, the first really big boom came. Helene looked at me with a face I will not forget as long as I live. Her eyes were as round as they could be and glassed over with the beginning of tears. Her lips were taut and trembling, but no sound was coming out of her mouth. The sound was building deep in the well of her soul, until her throat and mouth were so full with it, there’d be nowhere for it to go but out. And, out it came.
We had walked to the fireworks from my mother’s house, which was about a mile away. So, my choices were to try to run to my mother’s, carrying a squirming toddler in the middle of a full-blown anxiety attack or to wait it out, knowing the fireworks would last only a short time. I chose to wait it out and sat helplessly on the lawn, Helene wrapped around me, a blanket wrapped around us, and my hands clamped as tightly over her ears as I could get them. It felt like the LONGEST seven minutes of my life; I KNOW it was the longest seven minutes of hers.
This year, the Hubs wanted to try again. He bought Helene a pair of headphones that target shooters wear to muffle the sound of rifle fire. She willingly put them on, which wasn’t a complete surprise, because she likes to wear headbands and hats, and she will also occasionally wear headphones while watching her iPad. Once she had them on, we tested them by turning on the hand vacuum. Not even a FLINCH. Sweet! Of course, the hand vacuum doesn’t quite reach the decibel level of an exploding M80, but it seemed at least a positive sign.
As the day progressed, I felt less and less optimistic about this event. The fireworks wouldn’t start until 9:30 p.m., and we’ve spent the past couple of weeks dedicating ourselves to a 9:00 p.m. bedtime. (That’s for another post, another day.) Helene had gone the whole day without a nap, and she’d spent a good portion of the day away from home — very big events for her in the stimulation department. When we asked her if she wanted to go see fireworks (a concept we think she understood – at least in the abstract), she was a clear, “No.” So, to the Hubs’s disappointment, we decided to bag it.
We drove home from my sister’s house, where we’d barbecued. It was about 9:00 p.m. and getting dark enough for fireworks shows to start. As we crested the hill to turn onto the main road to our house, we saw people parked in the open-space parking lot, which is odd after dark, because the open space is technically “closed.” (I had to type the sentence very slowly and read it again …) We realized that people were climbing the ridge to see fireworks. Clever! But, the area was already crowded and we were in the wrong lane to head that direction. Suddenly, Helene piped up from the backseat. “Fireworks?” she said.
On a whim fueled by hope, the Hubs turned the car into the parking lot of a university near our house. It sits on top of a hill – a pretty tall hill. Sure enough, there were a handful of other people up there with the same idea — Maybe we can see some fireworks from here.
Helene willingly got out of the car. Thankfully, we had a blanket and a couple of folding chairs in the trunk, in anticipation of going to the “real” fireworks that evening. We grabbed them and trudged up the hill, through the dried grass and a sea of crickets. At the crest, it immediately was apparent that we could see fireworks not only coming from our intended show but all around the bay.
We unfolded the chairs, holding onto a slim reed of hope that Helene would enjoy this. I settled Helene in my lap, and the Hubs wrapped us in the blanket as a chilly wind picked up. A moment or two later, Helene saw the first of the twinkling lights. “Look! Red!” She pointed out in front of us. Then, all around us the sky exploded with beautiful lights — some close, some miles away. But, it happened almost without a sound save the chirping of crickets. The booms were muffled by distance and the wind seemed to carry them away from us.
Helene sat through the whole thing, cozily snuggled into my body, occasionally calling out the colors of the lights or saying, “Oh, pretty!” And, much to our delight, she stayed awake through the whole thing. At the end, we asked her whether she had fun. We got a resounding, “Yes!” Happy accidental Fourth of July!