Our latest issue is also one of the first we had to face once we began Madeline’s inclusion track at our local school: the dreaded school bus. Ever since Alexa began going to school she got to ride the bus, and Madeline would stand on the porch and wave to her big sister. She would tell me, “Bus too,” and I knew she was jealous. She wanted a chance to ride the bus like a big girl too, and we could see her champing at the bit to do just that. Last year that time finally came, but it wasn’t quite like our hopes and wishes for our youngest child.
First there was the problem of what I call “too much aiding.” Having a monitor on the bus is great. Knowing that there is someone there in case Madeline needs assistance is a positive thing, don’t get me wrong, but the first monitor fell into the pattern of basically dragging her onto and off of the bus. She could already climb stairs proficiently then, even if it took the two feet on one step process to accomplish it. But morning after morning, and afternoon after afternoon there was the monitor, hauling her up and down. We squashed that pretty quickly.
Then came the seating situation, and it’s the issue we are currently fighting for what is the umpteenth iteration of it. Yes, the monitor is on the bus primarily to keep watch over Madeline, and the other girl with DS who rides the same bus, but we began to notice a routine pretty much every day. The monitor would always sit in the front seat, and Madeline would somehow end up beside her — on the inside by the window. What this did was to effectively ostracize our daughter from the other children on the bus, emphasizing her status as “other,” when what we want is true inclusion, with at least the chance for Madeline to be with her typical peers at ever possible opportunity.
The bus ride, while only a short distance, qualifies as such an opportunity.
So we called the CSE office and outlined our concerns. We wanted Madeline away from that inner seat. A few years ago a friend of ours had a son with DS who we would see ride the bus when Alexa got picked up, and every day there he was, riding in that same window seat with the monitor on the outside. We said we didn’t want the same thing for Madeline, that we wouldn’t stand for that kind of treatment. We understood that they weren’t trying to do anything to ostracize her, but the end results were the same, and we weren’t pleased with the end results.
I never thought I’d be dealing with a ‘front of the bus’ problem in my life.
Things changed back then, and Madeline began sitting with other kids, no longer confined to that inside window seat, and she began to branch out as well. Sometimes the bus would pull up in the afternoon and she would be sitting next to another student and they had obviously been talking. Sometimes the bus would pull up in the afternoon and other children would wave to her, saying “Bye Maddie,” like they were little buddies. It’s the small things, and we appreciated that we were able to effect change.
Then, about a month ago, the children were assigned seats on the bus, unbeknownst to us because Alexa doesn’t share that information, which is where we generally get our information from school. We found this out because we realized that Madeline was once again in that seat that we thought we had cleared up last year, and that had been a point of emphasis with us all along. The way the bus pulls up to our current living quarters it is difficult to tell that, but one morning Heidi noticed it, and that’s how we found out they had assigned seats, and that they had assigned Madeline to the very seat we said we didn’t want her having, that we had been so vocal about.
Understandably we were livid. A game of phone tag later we were able to speak with the CSE chair and we laid out our concerns… again. It felt like some horrible sense of deja vu, like we were fighting for something that would end up being elusive once again, that we were in some kind of twilight zone where up was down and down was up. It felt like no matter what we said eventually there she would be again, in that inside window seat, with the monitor between her and the rest of civilization. But the very next day after our conversation she was with another little girl a seat back, not sitting with the monitor.
And I hope that’s her “assigned seat” now. But we’ll be watching, just in case.