Mary Beth Walsh
I’m the mother of a 12 year old child with autism and one of the phone-answering peer-moms on the
Mom2Mom Helpline. My glass book is about the space where those two dimensions of my life overlap.
The top layer of my glass book is painted red like a mouth. When other parents of kids with autism use
their mouths to tell me their stories, the connection is immediate and often hilarious. When we talk, we
laugh at the absurdity of our lives and the quirks of our kids. But the mouth also points to many of the
challenges our children with autism face, struggling to speak (40% of people with autism do not speak), to
eat, to communicate what they want and who they are.
The red paint has been slightly scratched off to reveal words underneath – words that I’ve experienced
and heard from other parents, visible only by looking through the scrim of stories of raising our children.
They are words of struggle and encouragement, meant to evoke the complexity of parenting children with
special needs.
In the lower corner of my book, I have pasted my own children’s baby teeth to signify the very scary but
real abyss that some parents face when they have to deal with the hardest part of autism, a child with
self-injurious behavior. Some of our kids sometimes hurt themselves, banging their heads, biting
themselves, or pulling out their own teeth. My kids’ baby teeth are arranged in the shape of a teardrop to
remind us how hard and profoundly sad these behaviors are.
The red is also meant to signify anger, because listening to other parents’ stories I have become newly
aware of the profound lack of services to help families through a crisis. A parent whose child is
experiencing a behavioral crisis has virtually nowhere to turn. Few understand, and fewer are willing to
help. And too often, the very people desperate parents turn to for help – pediatricians, the ER, their
school system – instead of helping, make things much worse because they do not understand autism.
The abandonment of children with autism by social service agencies, the mental health care system, and
their own school districts makes me furious, and must change.