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When I Met the Special Needs Parent I May Be in 15 Years

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Why is there that space between my driver’s seat and the center console, juuuust wide enough for things like my wallet and phone to slip through and fall onto the floor, but not wide enough for my hand to retrieve those things?

Why are there still people who don’t have EZ-Pass or Fast Lane, or whatever sort of electronic toll-paying box you can have on your windshield, for faster travel?

Why do cars in Massachusetts come equipped with turn signals?

Ah, the mysteries of life

I’m talking about my car and these mysteries for a reason. We just took our children Tess and Dana on the road, to see some drummers.

It’s dawn, on the day we’re supposed to leave. Our friend Nicole is picking up Dana to bring him to and from his soccer game. She’s the mom of Alex, Dana’s best friend. She is taking Dana to and from because she rocks. Also because it gives us a chance to pack the car and prepare Tess for the trip. This is key. NASA has less to do when they prep for a launch.

As I open the door and head out to Nicole’s car, I’m filled with dread as soon as I take my first step outside. The ground is pure ice. There’s a thin layer of snow on the walkway, and everything is iced over. I can barely walk because of how slippery it is. Falling from the sky is a punishing blend of snow and sleet and ice pellets, what they call “wintry mix,” in forecasts. I sigh. This means our drive time will be much longer than the two hours we’ve planned.

We have to bring Tess’s bed with us. It’s a solid metal frame of pipes and a super-strength tent that zips closed from the outside. It’s called Abram’s Bed, and it makes trips like this possible. We love it. Taking it down and putting it up takes time. Its pipes fit together with a little button that you push in and it snaps back open over a hole on another pipe, but not without pinching my finger and taking a little skin with it; the entire process makes me drop the F-bomb, like, 400 times. I’ve discovered the best way to deal with the bed, apart from my wife doing it (since she’s much better and more patient.) The best way is to make a game out of it. To set a timer and race the clock to build or unbuild the thing. To set new records and then try to beat those records. I would tell you I don’t talk to the bed and taunt it after I build it or take it apart in record time, but that would be a lie.

At last the packing is done. As we pull out of our driveway, spirits are high. My wife makes a joke that never fails to make us both laugh, about how we acted before we had Tess, how we had these quote unquote complaints about Dana, our 9-year-old, Tess’s older brother. “Dana is too advanced. He’s 11 months old and is talking too much.” “He’s not fluent in Spanish yet, even though our nanny is supposed to be speaking to him only in Spanish.” We were such a-holes.

We are on I-95 heading south. The snowflakes begin for real. In the lane next to us is a Fiat, and I believe the flakes are actually larger than that car. It’s slow going. Tess begins a relentless sonic assault. It’s a wintry mix of her own, a cross between whining and yelling that lets us know she’d prefer not to be in the carseat any longer, that she’d rather be in school. We have traveled approximately 10 miles from home so far.

Dana can’t hear us from the backseat, so conversation is pretty much impossible. I swore I’d never be that parent who regularly plugs in their kid, but plug him in we do, with an iPad and fat headphones that block out the yelling.

We’re heading for Boston, about two hours south of us. We’re doing this because my wife has had an excellent idea. It’s part of our new campaign to focus more on experiences than things. She’s arranged for our family to meet her sister’s family, so Dana can meet up with his cousins, two boys around his age who he loves dearly. Together the two families will use credit card points for a free stay in a hotel with a pool. We will hang out for the whole weekend. And we will all, Tess included, go see drummers together.

Luckily the snow lets up, about five minutes from our final destination. The journey has taken not two hours, but closer to three. Dana is itching to see his cousins. We’ve already fed Tess her lunch. I am insanely grouchy because I haven’t eaten enough.

We meet up with Kate’s sister Martha and her husband Chris. He is 10 years older than I am and is the closest person I have to an older brother. They follow this show and call a lot, so they know all about our lives. They take Tess from our arms and walk her around, away from us. They give us a much-needed break to satisfy our own needs — to get food and coffee and reset ourselves, to shake off the car trip. They are awesome in so many ways.

Then it’s time for the show. We head into a dark theater. My wife, wise beyond her years, has managed to snag the seats in the balcony, so we’re close to the action but have numerous release valves — empty seats, exit doors and an open aisle behind us for walking or dancing, in case Tess melts down.

The lights go down, and three men take the stage. They are pounding on drum, covered with day-glo liquid paint. They are staring straight ahead. They are blue. We are watching the Blue Man Group.

Tess responds to music like you wouldn’t believe. Anything with a bass line, with serious percussion, with a beat you can feel. And so we theorize that she’ll dig the Blue Man Group. For those of you who’ve never been, it’s an audio and visual paradise, with driving beats and lights. If you’ve ever seen a bunch of dudes busking in the street, banging out hardcore rhythms on buckets with two-by-fours, it’s like that, only with crazy lights and colors, actors who do little pieces, who are masters of comic timing, and a really good rock band behind them.

Tess likes it. She can feel the beats, for sure. But it’s overwhelming, too. The sheer force of the drums, the volume of it all, is more than she can handle. We take turns holding her and bringing her up to dance in the empty aisle. More than once, she burrows into my neck, trying to hide from it all.

The boys love it. We emerge from the theater, all laughing, all saying, “Did you see that part when…”

That night after her dinner Tess goes down early, like a sack of hammers, depleted by such a big day, no doubt. Chris and I make a run for beer and wine. The adults stay up and talk for hours, while the boys in the next room close the door and watch a movie and probably jump on beds.

Then Tess is bleating in the dark. It’s 3:30 a.m. I give her her pacifier, but it’s no good. She’s up, and so are we. We thank our lucky stars it’s a suite, so at least we can get her out into the living room and let Dana sleep. We sit her down and prepare to give her some food. And suddenly she is looking at the two of us and grinning. The smile is one of the largest I’ve seen on her, a toothy one, a smile of pure joy and delight. In spite of our fatigue, we chuckle at our girl, and all is forgiven.

The next day is relaxing. We swim and hang out and do our best not to do anything else. We’ve learned on these sorts of trips, less is more. We’ve purposely left Boston and stayed outside of the city, so it’ll be not just cheaper but also quieter and easier.

Then, it’s time. I leave my family at the pool and run upstairs to the room to get something. The elevator stops, one floor up. The doors open and I hear a voice.

“Come on, Sara,” the voice says. It’s a woman, probably older, judging by the sound. It’s like the way you’d speak to a small child, but there’s something else underneath that. There’s a quality in the voice that, for some reason, tells me for certain she’s speaking to an adult. I can’t for the life of me figure out how I know this, but I do. I know before I see Sara or the woman that Sara needs help getting onto the elevator.

I’m right. Sara steps inside. She’s in her 20s. She is so much like Tess it’s spooky. Her eyes are wide, seeing but also unseeing in a fundamental way. Her movements are jerky, her walk labored. She comes to a stop in the center of the elevator, not because I’m there and she knows about social cues and giving people space, but because she seems to have learned over time about how to walk and how to stop and when. She does not make eye contact with me at all.

Her mother follows her into the elevator, murmuring to her in soothing tones. The mother is in her mid- to late 50s. I see it in an instant–the unmistakable face of the special needs parent: her expression beleaguered but somehow still bright, the circles under the eyes, the forehead’s worry lines worn into permanent creases, the hair rife with early grays, slightly askew, probably hastily brushed, if at all. And above all in her I see the silent determination, the grit you gotta have, to go on the road with your kid, to endure that physical and mental toll of being in a hotel away from home. Away from everything that’s easy, everything that works and is safe, every procedure and safeguard you’ve spent years creating in your house, to keep your kid happy and protected.

I smile at Sara and her mother. They act as if I’m not even there.

The elevator lurches, and we plummet upward. It’s a glass elevator, so as we ascend the floor falls away, and you can see hundreds of feet straight down into the bar and the lobby, but the young woman doesn’t turn to look.

Her eyes stay frozen in place, wide. It’s clear our speed unnerves her. She tenses, as if she’s been hit. Her mother is there, at her shoulder, talking in low tones into her ear. “It’s all right, Sara,” she’s saying.  Sara’s expression doesn’t change.

Tess isn’t with me. She’s down at the pool with my wife. I wish Sara and her mother could meet Tess.

I want to reassure Sara. I want to say hello to her mother and tell her she’s doing a good job. I want to make this elevator ride work for them, make it less stressful, less of something to endure. Maybe even make it something enjoyable, a novelty, make it so Sara understands what a wonder it is to be in this machine that has a glass wall, so you can see how high up you are and what that means.

I want to reassure Sara’s mother too, to shout: “I am you. I am you from 15 years ago!”

Instead I say something trivial like, “Quite a ride, isn’t it?”

Sara doesn’t hear me or doesn’t seem to. The elevator dings, the doors open, and she and her mother exit.

The hotel is full of people. It’s the NFL playoffs, so there’s people in Patriots jerseys. Families in swimsuits on their way to the pool. Couples in winter coats, stomping snow off their boots as they enter the lobby. Clusters of professionals, clutching folders, en route to conferences in the banquet rooms. I don’t see Sara or her mother again. But I’m haunted by them for the rest of that day. I’m haunted by them still. I can’t help but feel like in that elevator, between floors 3 and 5 of the Embassy Suites in Waltham, Massachusetts, I’ve caught a glimpse of the future Tess. And the future me and my wife. We are on a trip. We’re hours from home. Perhaps in our hotel room upstairs on five, there’s a new version of Abram’s Bed, a bigger one with more reinforcements, to keep our Tess safe. The fridge in there is stocked with days of Tess-friendly food, in tidy containers we’ve brought on ice from home. Tess’s hair is long, pulled back in a short ponytail, so she can’t pull it or eat it. She is safe and warm and not unhappy. We are with her.

She is riding an elevator of glass, hundreds of feet above everything.

tess and dad smiling

Originally published: February 15, 2016
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