I’m the mother of four children, one of whom, Barrett, has autism. The family schedule can be quite hectic. My kids currently attend three different schools, which means three different buses. Lucky for me, Barrett rides the little bus and it comes right to our driveway. I’ve come to love the little bus – the little bus and I have come a long way.
When Barrett started special needs preschool, I remember being asked at his first IEP meeting if we wanted bus transportation. I knew instantly, without asking, that they meant the little bus. After all, IEP’s, special education, behavioral plans and various therapies were becoming a part of our vernacular. So of course they were referring to the little bus.
I said, “No.” No. No. No. I wouldn’t even consider it. I’d drive him. At that point, I truly believed that Barrett would never have to ride the little bus. He was going to get past autism. He was going to be alright. Also, I had a hang-up about the little bus and all it represented. I remember all too well the jokes from my childhood about “riding the little bus to school.”
My middle school had a special needs classroom. At some point I’d volunteered to work in the classroom and I’m not sure why or how it came to be, but once I was there, I wasn’t much help. I was terrified. The teachers were nice and tried to help me relax, but I couldn’t. I remember having to pick up a piece of candy that had fallen out of a student’s mouth and I was completely freaked out. Can you imagine? Picking up that one piece of candy offended me.
Then I became a mother. Now that’s a nasty job. There are no limits to the grossness of what I’ve had to do for my kids over the last thirteen years – sometimes really disgusting things, without even batting an eye. So thirty years later, I’m embarrassed that such a simple thing horrified me and sent me running for the hills. But it did.
And I never went back.
Now as the veteran of many special needs classrooms, I’ve considered this incident more than once. I feel like maybe that experience was some kind of foreshadowing. There was a reason I wanted to be in that classroom. There had to be, but I have absolutely no clue what it was. I often speculate how much of life is predestined, but that’s another story, one which I’ll spare you. I also wonder why those teachers didn’t work with me. I wish they’d asked me to come back. I wish they’d encouraged me and helped me to understand. Imagine what a difference that could’ve made – for me and for those kids. Instead, I spent my life looking the other way, until it was my life and I couldn’t run away – even though, believe me, there were times when I really wanted to!
Rather than face life on the little bus and our reality, I drove Barrett to school. It was a combination of denial, arrogance and ignorance. I had a lot to learn.
During Barrett’s last year of preschool, he was in an autism classroom at an elementary school that had a variety of special needs classrooms. There were classes with mild delays that also included typical peers to enhance social skills – Barrett’s twin was in this class. At the opposite end of the spectrum, some classes were equipped with wheelchairs, feeding tubes, breathing apparatuses and defibrillators. They were the real deal. Whenever I’d see those kids, I’d get a queasy feeling in my stomach and look the other way. I simply couldn’t face it. Until one day, it was right in front of my face and I couldn’t run.
At Christmas time, the parents were invited to join their children at school for the class holiday party, which was in the gym. It was fun and appeared to be like any typical school party, except for some crying and a few behavioral flare-ups. I remember being grateful for the typical peers, because they helped make the party more festive. More normal.
About thirty minutes into the party, the other special needs classes arrived. I had no idea they were going to be there and that old uncomfortable feeling came over me. I could feel the heat rise up into my face, as my heart skipped a couple of beats. Being in such close proximity to the kids, I was forced to look a little closer.
I noticed one student, who was in a wheelchair, was wearing a headset and clearly rocking out to some music. Some of the other students using wheelchairs were smiling, watching the children run around like maniacs. Sadly, there were also some who seemed completely oblivious to what was going on.
I began to cry. My heart ached for those children, but honestly, I was also crying because I felt sorry for myself and for my son. It was like a slap in the face as I realized that this was our life. My child was in special ed and possibly always would be.
Regardless of how Barrett looked, and he is gorgeous, he was on some levels, just like those kids in the wheelchairs. He’s living with a disability that prevents him from having the “normal life” most of us dream of for our children. He’s handicapped and these were his people.
It hurt. It really hurt. I tried to distract myself with my young daughter. I played on the floor with her as I pulled myself together. She was having so much fun and was oblivious to the fact that the chemistry in the room had changed. In fact, none of the kids seemed bothered by their party companions. Oh, to have that innocence again, because let me tell you, I wasn’t the only one in that room who was uncomfortable. There was a definite decrease in the noise level because the adults were no longer chatting – the tension was kind of thick.
Then, quite frankly, I was embarrassed. Shame on me. How dare I? I talked the talk of tolerance, preaching to everyone that my child and others like him should be treated the same as all children, but I wasn’t walking the walk. Wow, talk about an “aha” moment. I swear, in that instant, I began to change. I pulled myself up, even though I was shaking, and marched right over to the teacher who’d brought the class to the party. After introducing myself, I asked about the student’s headset. She explained that he was her “little rock star.” He loved to listen to music and it helped calm him. Well, that was no different from my son. I’d paid hundreds of dollars for a special headphone for his music therapy. Then she told me cute little things about each of her students and I began to relax – a little.
I couldn’t run anymore. If anything, I realized that I had to be grateful for what we did have, because we were lucky. It’s all about perspective. Our problems, although certainly not small, paled in comparison to the struggles of some of these students and their families.
Special needs aren’t contagious. I knew that, but my fear kept me from opening my heart. Maybe if I’d understood special needs better, it would have been different. I desperately wanted to make people comfortable around my son, but first I had a lot of work to do on myself.
Now this was, and continues to be, a process. Acceptance of sad and difficult circumstance is hard when it involves your children, especially when it’s something you can’t control. It’s a daily practice involving baby steps. After the party, I reconsidered the bus issue. It was time. Bear’s teachers assured me that the boys would love riding the bus. I felt guilty putting Hunter on the bus, but it was the only practical thing to do. I rationalized that no one would know Hunter was riding the bus, because it was coming so early (6:30 a.m.!). Also, most of my neighbors worked, so he’d go unnoticed in the afternoon as well. Our secret would be safe. Now remember, I said baby steps!
The cat was out of the bag on our first morning. Here’s a little tip, the little bus is really loud. When the bus rolled up on that first morning, we heard it coming before it even turned the corner to head down the hill to our house. I swear, it sounded like a jet plane taxiing down a runway. Honestly, it was louder than the garbage truck. You should have seen all the lights in the houses on our cul-de-sac turn on that morning. I can’t even imagine what my neighbors were thinking as they were loudly startled from their slumber. Standing in our driveway, I saw everyone peeking out their windows. We were busted. So much for anonymity.
Barrett still rides the little bus and we have embraced our uniquely special life, which is full of miracles. Over the years, we’ve gotten to know our bus drivers pretty well, and they’ve often saved me when I’ve been late for pick up or drop off. They look after my boy and deliver him safely each day. They give him holiday gifts and he serenades them while they ride (Bear loves to sing).
I’m still a work in progress, but I’ve come a long way. I’ve chaired the PTA Special Needs Committee at our school. I raise money for the Special Olympics, in which Barrett competes. My children attend the games each spring to cheer their brother on. They beg to be volunteers on the field, although they’re not quite old enough yet. They tell everyone how cool the little bus is and express jealousy that they don’t get to ride it. I just laugh. They are not afraid and I know they will never look away.