Farewell to a short bus

He’s been riding them for years. Some were terrible, others were okay. One was great.

One night while giving Colin a bath, I noticed small red marks all over his torso. He couldn’t tell me their origin, but after some cajoling I came to understand that his bus matron was pinching him when he was “too loud.”

This was a low point, but there were others. One short bus was just a beat-up yellow minivan blasting reggae music. Other buses had no a/c despite New York City’s notoriously hot and soggy summers. One had no heat: foggy clouds emanated from the driver’s mouth as he greeted Colin one January morning.

 Not happy after a long ride on a hot day with no a/c

Not happy after a long ride on a hot day with no a/c

One belched blue smoke and broke down regularly. It died its final death on a highway overpass during rush hour. The matron had to transfer the kids through traffic to a replacement bus when it arrived an hour later. Another short bus was perpetually late and the bus company’s only phone number was a single cell phone. Always busy.


These stories aren’t unique to Colin’s buses. One friend waited two hours for his autistic son to arrive home. The driver wasn’t responding to calls from the bus company, and no one knew where they were or why they were late. No explanation was offered.

Another parent’s non-verbal autistic child was dropped off at the wrong stop. Fortunately, a good samaritan saw the young boy wandering around, realized something was amiss, and went to work figuring out where the boy belonged. Had it not been for the kind stranger, all could have ended badly.


People make fun of short buses. In fact, the term “short bus” is often used as an ableist slur, one so common even evangelical Mike Huckabee thought it was an appropriate way to insult people. (Which begs the question, is there an appropriate way to insult people?)

But these short buses aren’t a joke, and they’re far more than a utility; for special needs parents, they’re a lifeline. And all we ask is that our kids make it from home to school and back without incident. We entrust our children to strangers who earn little more than minimum wage, and who have little if any training in special needs. And, in fairness, most of them do their jobs competently, if with little enthusiasm.

 

Median salary for a New York City school bus driver, via salary.com

Last week, however, we said goodbye to a very good bus. A great bus, in fact. It was clean and dent-free. It was quiet, with tinted windows to reduce heat and glare. Both the air conditioning and heat were effective, and it hummed like a sewing machine. Oh, and it was a hybrid.

None of that made the bus great, however. Alex and Mariana, the driver and matron, made the bus great.

 

 Colin getting ready for his last ride to school with Mariana and Alex

Colin getting ready for his last ride to school with Mariana and Alex

Each morning Colin is greeted with big smiles. “Good morning, Colin!” they cheer. Mariana asks how his day is going so far. “Great!” he says as he bounds up the bus steps, backpack flopping behind him.

Colin taps the dashboard clock when he gets on, time being something of an obsession for him. Some drivers have scowled, one used to swat his hand away, as if the clock were some kind of mission-critical flight instrumentation. Not Alex: he laughs, confirms the time with Colin, and gives him a fist bump or high five. And why not? You could set your watch by Alex’s arrival times. And when the bus is running behind, they send texts so we can prepare Colin to deal with his “schedule anxiety.”

Some matrons report every infraction—he was too loud; he banged on the bus window; he yelled when we got stuck in traffic—but not Mariana. On the occasions when I’ve asked how Colin is behaving, she smiles and says, “He’s fine.” Translation: “Sure, he sometimes does things he shouldn’t, but we’ve got this.” (Thank you for not making everything a problem we have to solve.)


Colin rides the bus for up to three hours every school day, and for the past several months, we’ve had the good fortune of knowing he’s riding with Alex and Mariana, two people who not only do their job ably, but who genuinely care about the children in their charge. Two people who won’t earn any extra money for being good and kind, but who do so anyway.

Sadly, today was Colin’s last day on the best short bus he’s ever had. We’re grateful for the peace of mind you’ve given us, Alex and Mariana, and for the care and affection you’ve shown our son. Maybe, if the stars align, you’ll be picking Colin up again in the Fall. Either way, you’ll always hold a special place in our hearts.

Progress happens

C with one of his teachers post-concert Two years ago, my son's previous school held a holiday concert. C had to be supported on stage by a teacher's assistant because he was so overwhelmed. The concert was loud and chaotic, all the more surprising since his school served children who often have major sensory issues. But his reticence to be part of the event went deeper than that: he was struggling.

Fast forward: C's current school had a holiday concert this week, and he was beaming with pride and joy, so confident and happy to be part of the show. In fact, when it was his turn to sing, he put on this deep voice and belted out his lyrics, silly as he was earnest. He even had to be pulled away from the mic, he was so excited. He danced and sang with glee.

So what happened in the intervening two years?

The concert was better planned than the one at the old school, it's true—not so overwhelming from a sensory perspective. But his ability to participate was due to much more than that. For one thing, the staff and teachers at his new school deserve a ton of credit for helping him to become so confident.

But on top of that is this: progress happens. Naturally, of its own accord, with support and love.

It's easy to forget that our kids, just like all kids, make progress. Sure, regression happens, but progress happens, too. It might look different for autistic kids vs. their non-autistic peers, but it's still progress.

Progress happens.

Thanksgiving?

If you've read this blog at all, you know I generally try to keep things positive. The reasons for this are many, but for one thing I have no interest in complaining about my son in particular, or autism in general. But there are tough times, and in the interest of keeping it real, I wanted to discuss this last holiday break for Thanksgiving. There were some wonderful moments and memories, to be sure, but it would be disingenuous to say it was all puppy dogs and lollipops.

This break in schedule — any break in schedule — really messes C up. Routine is his friend, and even a short break really drives him bonkers. This resulted in five days of complete hyperactivity. He was up early — 4 am or thereabouts — and going going going. This means no rest for us. At all. He has to be watched every moment.

Why? These five days were filled with jumping on furniture; writing on furniture; chewing furniture. Putting things in the oven — including an iPod. Flushing foreign objects down the toilet (plumber's on his way today). Stomping on the floor (thankfully our neighbors are very tolerant. Or hearing impaired). Hooting and yodeling at the top of his lungs. Putting gooey things found on the sidewalk in his mouth. Unable to sit and focus for almost any quiet activity. Perseverating on times and dates to the exclusion of nearly anything else. Running into the middle of a busy street for the fun of it. Just going going going.

Then there was the isolation: living in a state of basically always being overwhelmed, we never managed to organize anything at our home, and we weren't comfortable inviting ourselves to someone else's home. Friends say, "It's okay, just bring him along! It'll be fine!" But that means we can't enjoy ourselves at all: we'd have to watch C like hawks, follow him everywhere in a foreign environment (another stress inducer for him, and for us). And, frankly, it's enough to pay a plumber to fix our own toilet; we don't need to do it for someone else's, too. So, going to someone else's home was out — even if we'd been invited.

Normal routines were busted up. Our go-to sensory gym was closed for the holidays (just the time we'd need it most, alas). Social skills class was canceled for the same reason. And to top it off, the Department of Ed scheduled an evaluation for C on Monday, further destroying any semblance of routine. This last item really sent him over the edge: he looks forward to school, and to Mondays in particular, because that is when classroom jobs are assigned. These jobs are very important to C, and so he was utterly distraught and couldn't stop perseverating on it. (My wife finally had the great idea to have C help write an email to his teacher telling her what jobs he wanted for the rest of the week, calming him quite a bit.)

All this acting out was hard on C's twin, too. C's behavior stresses him out, and then he begins to act out, too. Thankfully, as he gets older, M is better able to understand and deal, but it's still touch-and-go.

Whew. Getting that off my chest feels good.

So, gratitude. Yes, there were moments of gratitude, too. I'm grateful that the weather was incredibly nice, allowing me to get C outside for extended periods. I'm grateful to my wife who made a wonderful Thanksgiving meal despite it all. I'm grateful to C for taking one tiny bite of the meal — sweet potatoes with marshmallows. I'm grateful to M for how he's learning to accept his twin. I'm grateful to get back to our routine...until the holiday break, I guess.

But most of all, I'm grateful for our health and general well-being when so many are suffering in unimaginable ways.

Thanks for letting me vent.