The moment you give birth or sign the adoption papers, you’re a parent. Your child may be eczema ridden or missing a leg or can’t hear or can’t control any level of emotional distress or whatever it is…you’re the parent. We all know this, but very few of us know this the way that parents of special needs children know it. Can we recognize that those parents have it harder? Sure. Do we kinda sorta know someone who’s a friend of a friend who’s son is autistic and isn’t that a shame, what a nice family they are….you betcha. Do we have any idea what the day-to-day life for a Mama with an autistic child is? I’ll admit I thought that I did, but in fact, after having read “My Baby Rides the Short Bus”, by Jennifer Silverman, a local Queens Mama I realized I did not know the first thing about it.
Perhaps the easiest way to describe “My Baby Rides the Short Bus” is to tell you what’s NOT in it. This book, written entirely by parents of children with special needs, does not have a single reference to a child being a “special angel” or “a gift from god”. In fact, most of these leftist leaning self-proclaimed liberal hippies would tell you that God is a construct designed to distract us from our reality, or something along those lines. Instead, readers should prepare themselves for the eye-opening, searing, brutally honest and painfully funny stories of parents who are telling us the true reality of what it takes to raise a child (or children) with special needs. Not the Hallmark movie of the week version of what it’s like, more like the HBO mini-series version of what it’s like. Be prepared to see yourselves and your children in these stories, because if there’s one thing I’ve taken away from reading this, it’s that there is no such thing as a “parent of a child with special needs”; there are only parents, just like all of us, and some have children who demand more. These parents have jobs, other children that they worry about, spouses, bills, and wonderful funny moments with their children. It may be the most refreshing thing about this book; parents coming out from the cloak of “special-ness” and telling us about their children and their lives.
Reading Karen Wang’s story and seeing her full transformation and dedication to her son’s needs; prioritizing him above all else, including housework and keeping herself in pants without holes in the knees, is an exhilarating lesson is what parenting can be; the full and complete immersion in your child’s needs. Her observation is that most therapies seek to change the behavior of an autistic child, but to her and her husband it makes more sense to change the behavior of the parents so that “we can better support our child’s natural development”. They basically turn their house into a sensory gym, and engage in no activity that cannot in some way provide their child with an opportunity to learn or connect. It’s not something everyone can do, and not something every single parent in this book does, but it showed me love at its most magnified.
Reading Heather Newman’s observation that she is “not embarrassed or ashamed” of their son, but she does believe that they “have an obligation not to let him be the local freak show”, or Ayun Halliday story about when she forgot to pay the insurance premium and could not afford her daughter’s seizure medication, or Thida Cornes decision to stop trying to nurse her special needs baby (an effort that took hours and hours of her day) so that she could make time for her struggling older daughter, one cannot restrain the Mama bear feelings that arise; we will all be able to understand the struggles, the mistakes, the triumphs, and yes, sometimes the anger and resentment of losing control over our lives and the dreams we had for our children.
I imagine many will share the first instinct I had; that this is a great gift for parents who do have special needs children, and indeed, it is. Parents of special needs kids will certainly find solace and empathy in these pages, but they already know that reality. This book is also about reaching the other side; connecting that reality to the rest of us, making it easier for these families to leave their houses, go to the neighborhood playgrounds, have their children attend mainstream schools, and allow all members of these families to enjoy just a piece of the “normal” many of us take for granted. It’s not a pity party, but a cry for acknowledgment. Read this book. It will make you a better parent, it will help you understand your feelings and the feelings of the woman on line in the grocery store whose 12 year old child is throwing a wild tantrum, and the feelings of these children who live in a world that judges them for something they have no control over, who most often live and learn in isolating situations, and who deserve some portion of freedom from their “needs” and permission to simply be in the world.