Holding Up the Bus: A How-To Guide on Getting What You Want

“I have a question,” said a woman in the second row. She was wearing a red cardigan and had been quiet for most of the hour. “How do you get the things you want from the school?”

I was finishing up a reading in a nearby town over the summer, and the discussion had just about petered out. Out of the corner of my eye, I could see the next author leafing through the fiction novel she’d written, preparing her notes and looking at her watch.

“Uh, good question!” I stammered. “Well, we kind of all work together. As a team. You know, we’ve never really had a problem getting what Jack needs to, you know, do well.”

The woman in red nodded unconvincingly at my lame answer, and before I could go any further the bookstore owner shot forward and wrapped things up.

But I’ve thought about her question off and on for the past month; how do I get the things I want from the school?

To answer this requires more than a five minute response. It may even require more than one blog post, but I’ll do the best I can. Basically, I can sum it up with three separate, seemingly unrelated anecdotes about an imaginary play date, door knobs, and grief.

Bear with me.

Back when Jack was in first grade, he’d watched as second-grade Joey took the bus to different friends’ houses for play dates each week. He expressed interest in a play date himself, which is to say he told us, “I want play. To take the bus.”

One afternoon he decided to take matters into his own hands, and followed a little blonde girl onto her bus because he was going to “sleep at her house.” You know, without packing a bag or telling anyone first or even knowing the girl’s last name.

That same afternoon, I had some friends over for lunch, and over the din of babies and toddlers and laughter, I never heard the school call the house to find out if he had a note or if he was supposed to take another bus home.

Between the missed call and an irate six-year old with autism at dismissal time, there was a fair amount of chaos at school. Eventually they reached Joe, who raced over to pick him up, but in the meantime all of the buses were delayed while Jack screamed and thrashed.

Once everyone was home, Joey—visibly shaken—relayed the scene through his eight-year old eyes: “Mom, he was screaming and crying. They couldn’t calm him down. All the buses had to wait and everyone was looking at him.”

This was on a Friday afternoon, so I had the entire weekend to seethe, to simmer, to fret. I was outraged. For two days I ranted against the injustice, the unfairness, the discrimination of it all; no one should make a spectacle of my son. They embarrassed him! They humiliated Joey!

As soon as the kids boarded the bus Monday morning, I installed Henry and Rose in front of Mickey Mouse Playhouse and called the school. I was connected with the Vice Principal—a lovely woman who is no longer there—and shakily, with a weekend’s worth of tension behind my voice, I asked what happened. And right away she said something unforgettable.

“Mrs. Cariello,” she answered. “We could have done better.”

Sitting at my desk in my bathrobe, I could hear Rose’s raspy voice counting to ten in unison with Goofy, and I closed my eyes against a rush of tears. All at once, my fortress of rage and indignation crumbled to the floor, brick by angry brick.

“Thank you,” I whispered. “That was all I needed to hear.” And I realized it was.

For the rest of the morning, I thought about the idea of doing better, and as I poured Cheerios and changed diapers, my mind wandered back to when Jack was about four years old.

He’d just started what I like to call his Door Clicking Phase. For about six months, he moved steadily throughout the house all day, clicking each door open and closed and opened and closed to test who only knows what – how many times he could do it? How hard he needed to push for the door knob?  It drove me to the brink of my sanity.

I had a newborn and a kindergartener at the time, and all sorts of small people scattered in between. If there ever is a time for door-clicking, this was not it. One day I reached my breaking point.

We were in the kitchen and I was trying to get him to put his shoes on so I could pick his older brother up before his younger brother needed to nurse and his middle brother peed in his pirate costume because we were potty training. I was holding blue Stride Rite sneakers in one hand and asking four-year old Jack over and over listen to Mommy put your sneakers on here are your sneakers put them on. He wouldn’t even look at me, lost as he was to an inner world of doorknobs.

Click.  Click.  Click.

And people, I kid you not when I tell you I dropped those sneakers to the floor, grabbed fistfuls of my own hair with my own hands, and jumped up and down begging—BEGGING—this boy at the top of my lungs to stop stop STOP that clicking right now before I lose my mind STOP IT.

Trust me when I say this: I COULD HAVE DONE BETTER.

(Note: the Door Clicking Phase was immediately followed by the Toilet Top Removal Phase. After watching Joe lift the top of the tank off the toilet one afternoon to look for whatever it is men look for in the back of the toilet, Jack would spend the day going from bathroom to bathroom, trying to slide the heavy porcelain lid off himself. And following that came one of my favorites; the Smearing of Bath and Body Works Anti-Bacterial Foam Soap All Over the Walls Phase.)

A few months ago our school’s special education department held a meeting to talk about some changes in the program; plans to make the integration room more soothing and the classroom transitions easier. When the presentation finished, hands started to wave and angry voices began to fill the air; what about those IPads you promised and why can’t we have the same aide as last year and how long before we see any real change.

All at once the room felt emotionally charged, tense. I leaned back in my chair and closed my eyes against the conflict. As the angry dialogue rose and fell around me, I heard a quieter subtext, a softer voice struggling to be heard; she is not talking he is not learning I am scared I am scared help me.

I heard grief.

Grief is such a funny thing, isn’t it? It rears its sad little face in a variety of ways, and before you know it something like I am terrified because my child has autism becomes everyone is wrong we are not getting what we want we need more.  Before you know it, the sad face contorts and twists into an expression of rage.

We parents of special needs kiddos are constantly grieving; grieving the loss of a child who may never have a play date, who may never speak, who is simply never going to be the son or daughter we imagined when the nurse first placed the tiny bundle in our arms so many years ago.

But over the years I have learned I have to open my own fragile heart and let other people see how raw and tender it all is, how I bleed for my son who follows a little girl at dismissal, how I die a little each day when I watch him through the bus windows, stimming and zooming, eventually taking a seat. By himself.

I have learned to say I don’t know what to do he will not wear his glasses I am failing I need you. To say I cannot do this alone.

And beautifully, magically, the teachers and paraprofessionals and principals reach back. And this happens:

The truth is Jack isn’t the only student at school. He isn’t the only special needs student or even the only student with autism. He isn’t always going to get the fancy IPad or extra time in speech therapy. But that doesn’t mean he can hold up the bus.

Because it’s not so much as getting what you want, as much as accepting what people can give. Tolerance, compassion, acceptance, well, those are the unlimited resources that promote progress and change, that help a small boy learn to read and write and regulate and play.

That’s what I wish I’d told the woman in the red sweater.

I’d like to thank every teacher who has wept along with me when I panicked that Jack wasn’t making progress, who handed me Kleenex and assured me we aren’t giving up he will learn to read.  Who accepted his thirty million secret admirer letters with grace and counted how many times he went to the bathroom to make sure he didn’t have a stomach ache he couldn’t find the words to describe. Who held his hand during fire drills and patiently, oh so patiently, coaxed words from his silent lips.

Because in the end, these are the things I want.