speak softly….

Recently, when I wrote about Josie doing some silly thing or other, a friend remarked that it was nice not to have to see each and every post address Evan or disability. It’s true. Even special needs mama needs a “break” from those sobering moments, but several posts today remind me of what is never very far outside the door.

First, Susan reminds me of the ways that we are often under seige, and how a family’s life is never “the same” with a child like her son, or Evan. Our weekends, for example, no longer include family trips to the bookstore or library. As soon as Evan is in an unfamiliar environment, he starts slapping his face, yelling and crying. I’ve tried “extinction,” a method where I ignore him and let him go at it. This elicits stares and comments like, “he’s slapping his face!” as if I 1) like it; and 2) don’t mind if he keeps it up. I’ve also tried talking to him, calming him, and, finally yelling. None of it seems to work. We’ve had phases where he’s fine and I can actually read a magazine while Cliff an Josie browse for books but for some reason it never lasts. So, for the moment, we stick close to home, visit the park and tag team it when it comes to errands.

Next, Niksmom talks about health scares and IEP’s. I have a friend who says that as soon as her son gets a cold, she’s convinced he’s headed into a full-blown seizure. “If he’s on medication, that can’t happen, can it?” she will ask, and she and I will then head into the kind of conversation no mother of a typical child would ever understand. It’s called post-traumatic stress and you never known when it’s going to rear its ugly head. I had a dream the other night that Cliff and I had allowed Evan to climb to the top of a huge tower, only to watch him totter and fall. “Is his leg broken do you think?” I asked Cliff, to which he replied, “Uh, yeah!” as if I had not just witnessed the fifty foot drop. A few years ago, I might have believed him to be dead in the dream. I see the broken leg as progress.

Finally, Kristina writes about our kids and their futures in a way that reminds me that disablity is not acute, but chronic. My son with special needs is going to become an adult with disabilities, one who will live (if I keep him off those towers) long after I am gone. Cliff has told me he expects Evan to live with us for the rest of his life. Me? I want to travel and go to bookstores. Of course we are ten years or more away from figuring this out, but once school and therapies and IEP’s are all said and done for, Evan will need to live somewhere with a caring, compassionate person, one who understands his “um-ums” and knows what to do with them.

Like Kristina, I hope for a future where a person like Evan is included, welcomed and embraced. Life with thes kids starts with worry, but it must, de facto, end with optimism. What else is there?