Amongst the many, many prayers I say in my daily salat and scatter throughout the day, today’s important prayer is for the bus – Lil D’s bus ride. He is riding the bus home today, for the first time in nearly six months. And I am, for the lack of a better adjective, anxious.
Lil D has been a bus rider for most years of his school life – from when he first started going to [an autism] school fulltime in New York City (Manhattan) at the tender age of three, to the five years he spent in public school here in Virginia. Riding the bus was a painful exercise in him learning some independence away from me during those early years.
For the first month that he ever went to school – two months after we received his official diagnosis of PDD-NOS, otherwise known as autism spectrum disorder, and two months after an extremely emotional, stressful time for us coming to grips, interviewing New York-area autism programs (send him to Queens on a school bus? My baby? Heck, no.), starting to delve into diet changes and other therapies – I took Lil D to and from school in the subway or sometimes a taxi.
Just leaving him at that school — a child who had never been away from his mother, who didn’t understand what was happening, that I was going to come back and get him — was excruciatingly painful and emotionally heartbreaking. In that month, the school worked to get his bussing situation set up, telling us that although it would be initially tough for Lil D and me to send him on the bus, it would foster important independent skills for him.
Tough? Tough doesn’t begin to describe it.
As it was, every day when I dropped Lil D off, he was crying and was scared. And, I was too. Although we had done Mommy and Me classes at a Manhattan YMCA and had spent the previous year with early intervention therapists working with him in our small apartment, I had never left him like that. The first time a child goes off to preschool or school is a mixture of joy, trepidation, and bittersweet sadness for most parents and kids. For us, there was no joy. There was everything else.
And so, a month into his school career, the Manhattan county transportation department informed us they were ready to add Lil D to a bus route. I can’t do it, I said to my husband. I won’t do it, I said to his teachers. And where I was scared, they all pushed me to be strong.
Bussing Comes with Painful Trust
He rode the bus. And cried the entire time. For one, long, agonizing month. The tears would begin I put his shoes on him in our apartment, they would increase as we waited in the courtyard of our apartment building for the bus to come. And, they continued the whole ride to school and the whole ride home.
Then, one magical, magical day, I got a call from his school. “Mrs. Ali,” they said, “Lil D came off the bus today, and he was NOT crying!” I waited with bated breath that afternoon, and when he came off the bus, he was NOT crying. The bus driver reported that he was calm and quiet the whole ride home. Hallelujah! Alhamdulillah! Thanks be to Allah! It was the Best. News. Ever.I relate this story to explain how hard it was to get Lil D to ride the bus, and why we chose to do so. There are plusses and minuses when parents choose to bus their special needs children (sometimes, there is no choice). I think the biggest minus here is trust. As I wrote in this previous post about “Trust and the Autistic Child” (please take a minute to read it, and you’ll understand where I’m coming from. Done? Good.), the act of sending your special needs child out into the world is one of most gut-wrenching and scariest leaps of faith a parent can take.
We have sent Lil D on the bus to school a total of seven out of his nine years of school thus far. This is a severely autistic, nonverbal, vulnerable boy who cannot report to me if anyone has been mean, degrading, or rude to him – let alone lifted a hand against him.
And yet, because we are trying very hard to get Lil D acclimated to the world, to be more independent in this world, we have made that decision to send him on the bus. (And boy, do we check up on him.)
The Long Ride Home
Last spring — after months of problems in school and on the bus due to his alarming rise in self-injurious behavior (and sometimes aggression), after months of near-daily phone calls from his teacher in public school telling me that he was having a meltdown a half an hour before dismissal time causing me to go and pick him up – I discontinued the bus service.
It just wasn’t worth it. He was in no position to ride the bus, as he had become a danger to himself and others. When summer school started up, his new teachers and I decided to reinstitute the bus. The morning ride has been dicey, but we are persisting. But after two utterly disastrous rides home that first week, we all mutually decided to suspend the ride home for the time being until we better addressed his behaviors.
Which leads me to today. Today is the day that he is riding the bus home. Today one of his teachers is riding home with him to observe him. So although I’m nervous, there is that. But what about tomorrow?
Sometimes I wonder why I’m pushing so hard to get this skill back. Isn’t it just easier to pick him up? I get to have a short conversation at the end of the day with his teachers about what happened that day (instead of relying on the note home, which many times doesn’t give me enough information), and most importantly, he is back in my care. And, although the bus driver does let me know if something is majorly amiss with Lil D, I never get a daily update of how his ride was. That’s just too much to expect.
Still, with three kids at three different schools and three pick-ups and drop-offs to manage, I need Lil D back on the bus. He needs to learn how to do this again. Now, the ride home will be longer than what he was used to in the past, and he will be tired and prone to “bad” behaviors at the end of the day. He will have to sit in his seat the whole ride home instead of being able to “drop” on the floor, like he tries to do every time in my van.
What will happen? How will this go down? What will we do tomorrow? Are we doing the right thing for him?
It’s just a damn bus ride.
But it’s so much more.
Ya Allah, make it easy.