It’s been slightly over three years since we (myself, Sarah and Yantra) had the idea to turn a small zine called My Baby Rides the Short Bus into a book project. I had no idea how intensive the process of putting together an anthology would be. No matter how stressed I got during the submission process, proofreading, and last-minute edits, the book that we’ve come up with made it absolutely worth it. Our book events have kicked off in Texas, with NYC, and Philadelphia coming up soon, and west coast events to follow. I hope you’ll come out to meet us, and share how you felt about the book. You can also drop us a line at firstname.lastname@example.org.
In my personal essay in the book I wrote about my family and the dichotomy I felt in my life as a mama in raising a son with autism (Luc) and his “typically developing” younger brother (Milo). I had written it almost two years ago, and many things have transpired in our lives since then. Notably, Luc’s recreation program that framed my narrative has disappeared from our lives. A few months after finishing my essay we were given notice that our state’s bureaucracy had decided that the funding for that program would be better served with individual respite care. We had come to rely on that program not only for Luc to socialize and play, but for our personal time—a four hour window out of the weekend where we could catch up on schoolwork or sleep, give Milo alone time, and get a breather to get through the rest of the weekend. We were told we’d get a worker for those hours—and we did, two months or so after the program ended. Sadly, I should consider us lucky that it only took that long. Luc has a great respite guy now, but it’s incredibly frustrating as a parent to be told what’s best for your child’s needs by some unidentified pen pusher who really has no idea of what our needs are. And on top of that, to attract a qualified respite worker that I can entrust my non-verbal son with when the going salary rate is $10-12 per hour. Our respite agency’s folks are unionized and trained and supervised, but that’s not always the case. I’ve touched on these issues in an as-for-now unpublished essay called “Autism Class War,” that I hope to finish sometime soon. For now I am strongly encouraging all you allies and friends to see what’s in your community for families of kids with special needs, and brainstorm how you can help support them, whether: through advocacy for better respite, support for higher wages for direct care workers, protesting budget cuts to developmental disability services, or volunteering to do childcare for our kids in collectives or individually. And by buying a copy of My Baby Rides the Short Bus to read first hand accounts of our struggles and accomplishments.