It was just a new bus route.
To my “not-so-typical” typical third grader, however, it was so much more. It was unjust. It was unfair.
“But Mom!”, he said, on the verge of tears, “it’s not fair that I’m the first one on the bus in the morning and the last one dropped off in the afternoon! And our bus is the late bus so ALL the other kids are getting home before me.”
He looked at me with those pleading eyes – the “how are you going to fix this?” eyes.
He knows me. He knows this is what I do now. He’s seen me “fix” things for his younger brother a million times. He’s heard me make countless therapy appointments, speech evaluations, IEP meetings and developmental assessments. He’s been here when teachers and specialists have met with his siblings and have told me that they aren’t scoring in the range to qualify for services, and he’s heard me fight to get them those services they so desperately need. He’s read the books about autism. He’s seen the accommodations we’ve made in our house to help his brother – the visual timers, the PECS cards. He knows that I do whatever I can to get his brother what he needs. And now, he was asking for me to do the same for him.
In my head, I’m thinking it’s just the bus. Do I really want to use up my fight for this?
When you have more than one child, people remind you that you have an infinite amount of love to go around. What they don’t tell you is that you will have to have an infinite amount of fight as well.
For so many of us parents of special needs kids, it feels like we have to fight for everything. Nothing is handed to us on a silver platter, and if we don't speak up, our kids will lose out. However, perceived or real, it also feels like we have to pick our battles. That if we fight so much and so many times on everything, we’ll no longer be taken seriously and we’ll lose our credibility with the bigger things. The “squeaky wheel” may get the most grease, but sometimes it feels like if the wheel is constantly squeaky, it becomes annoying background noise that no one hears anymore.
But how do I tell my 8 year old son that I won’t fight this for him? How do I tell him I have to save up my fight in case something terrible happens tomorrow, or the next day, or the next week? How do I tell him I feel like I have to save it for his brother?
I don’t. I can’t.
I told him I’d do what I could. I’d write a letter to the director of transportation and ask the questions: why did the route change, and why was the longest route also the late bus. I told him that I would write that it didn’t seem fair that he had to be on the bus for an hour when other kids were on the bus for only five minutes. But I also told him that we might not like the answers given, and if it made sense from the school’s point of view, then we might have to accept that and move on.
I kept my word. I wrote an e-mail expressing my concern, and asked the director to see it from my perspective as a parent. I explained that it was a matter of fairness, and asked her to take another look at the route. When I didn’t hear back from her, I re-sent the e-mail and copied the principal. A day later, I received a response back to me and another parent (apparently, I wasn’t the only one in my neighborhood who had complained about the length of time our kids were on the bus, considering we live five minutes from the school). While her answer didn’t make a whole lot of sense to me, she did say that the kids were no longer going to have to wait in the hallway for the late bus, so they would be home 10 minutes earlier than previous days. This change seemed to be enough to satisfy my son, and he hasn’t talked about it since then.
Am I worried that the next time I have a problem I won’t be taken seriously? Of course. But would I do it again? Absolutely. Even though it was just a bus route to me, I had to show my son that I’ll fight to make sure my kids – all my kids – are treated fairly. I may not win every battle, but I have to at least try to fix it and make things right.
Because as a parent, that’s what I do now.
Alysia Butler is a stay at home mom to three boys, one of whom has autism spectrum disorder. She writes about that and other things at http://trydefyinggravity.wordpress.com and is STILL trying to figure out Twitter @trydefyinggrav.