Many of us who blog about parenting children on or near the autism spectrum do so under internet pseudonyms, blog-o-nyms that provide a thin veil of privacy for ourselves and our families. I have very mixed feelings about blogging under a nom-de-net.
At one level, I would like everyone I know in every sector of our lives to know the particulars of our daily lives. I want them to know about the issues with sounds, and foods, and various fears and preoccupations. I want them to know about the meltdowns we all weathered. I want them to know what a leap of faith it is to send your child off to school every day, year in and year out, knowing that she does not have enough language to report on her day.
I want them to know about why money is often tight since one of us has opted out of the labor market to remain available for the emergency school pick-ups and the trips to therapy appointments. I want everyone to know about the extraordinary expenses of additional neuropsychological testing and speech-language therapy services that are sometimes partially covered by insurance, but usually are not.
I want them to think about the work hours lost in endless school site visits in search of a more appropriate setting. I'd like them to understand the particular toll it takes to go to battle with the school and the school district at an IEP meeting. I want them to know about the costly conversations with attorneys who can sometimes be as concerned with maintaining their good standing with the school district and with the private schools where placements can be made as they are with protecting any one child's interests.
I want them to know about that special anguish of having others see your child as a problem, as a set of pathologies. And the reciprocal difficulty of others seeing you, the parent, as the problem, because you are (pick one): too indulgent, too strict, too attached, too cold, or — one of my personal favorites — in denial.
I want to stand up and say, Yes, that's us. That's our life. This is how we spend our time. This is what we do. Welcome — welcome — to our world.
I want everyone to know about those moments when the supposedly impaired girl masters something that others had told you would never be possible. I want every one to know about the triumph of the dry bed. The first overnight away. The learning to read. The extraordinary artworks. The self-advocacy. The emerging womanhood. The exploding vocabulary. And the day that the girl who was silent steps up to the microphone. I want everyone I've ever known and everyone I'll ever meet and everyone else as well to know about how the liability of perseveration has given way to the asset of perserverance.
The publication of Gravity Pulls You In raised the ante on the anonymity that many of us who blog about parenting children on or near the autism spectrum have held dear. Some came out to be published under their own names. Others, myself among them, stayed behind that thin veil, moms behind noms. I could not be more conflicted about this . . .
To read the balance of this essay, visit the website for Gravity Pulls You In.