I have often heard people instruct children on the spectrum (including mine) to “use their inside voice.” This has no meaning, of course, to people on the spectrum, and in fact, I am not sure it means anything to me in its literal sense. This blog is to bring the “inside voice” out in the figurative sense, containing observations and commentary on topics close to my heart — life on the autism spectrum, “special needs” families, the educational and health care systems that serve (and sometimes fail) them, and a spotlight on the trailblazers in the community who are working to bring the outside in for the rest of us.
In 2001, I was a young associate at a prestigious Washington law firm (that collapsed a year ago, by the way), I was married to my high-school sweetheart and we had just bought our first house in the suburbs. I had it all figured out. That is, until February 23rd, when my first child, a son, came into the world. Despite good prenatal care, we were unaware that our son had a serious and rare craniofacial disorder — the bones and soft tissue of his face failed to fuse properly in the womb. As a result, all structures of his face were affected — but particularly his eyes and we knew early on he would fight blindness for a lifetime. We struggled mightily in those early days — did our son have a future? If he did, how would he navigate this world? Would he have friends or any sense of normalcy?
Fast forward several years — we have adjusted to our son’s craniofacial condition and the limits of his vision when we realize that he was also developing differently than other children — he was diagnosed shortly thereafter as having “Pervasive Developmental Disorder” (PDD), which is really another way of saying that he has high-functioning autism. We are stunned that lightning could hit the same child twice, but are reassured by the geneticists that the child I am now carrying has a very small chance of having the same issues as our son.
Then, we discovered it’s possible to be struck by lightning three times. Our daughter, watched carefully in the womb, emerges without any craniofacial disorder to speak of, but at one year she is not speaking, does not make eye contact and engages in the classic “hand-flapping” stereotopies of autism. Fast forward several more years to the present and we have figured out a new normal. My son has some vision, my daughter occasionally points to what she wants instead of her usual jumping up and down and screaming, I am still a lawyer in a large Washington law firm, my husband is a cycling enthusiast and I volunteer as an EMT for our local fire department. The world did not stop spinning.
Despite their struggles, both of our children are very loving and sweet (well, most of the time) and we have come to understand them in a way that even others in our family do not. We have settled into our lives together and have our own routines, but we are not a typical family by any stretch of the imagination, and even casual conversation with acquaintances becomes an awkward dance of “how do I explain this to you,” at least for awhile. We have found it difficult to fit in to the larger community, given that our children do not play with the neighborhood kids, they don’t go to the neighborhood schools, and we live in a world that often tries to be free of children. It’s certainly hard to find a welcoming place for our children in this world, obsessed with appearances and the importance of “fitting in.”
But I am blessed and fortunate to have this extraordinary life, and so I bring my world that is inside, out, to share it with you.