Despite the fact that my son is considered a "sick kid"—a child with multiple, chronic conditions—he actually hasn't been in the hospital for years. About a month ago, his winter cold turned into pneumonia, and we've been reacquainted with hospital life with a vengeance. Parenting a child in the hospital for the first time in nearly a decade, I can't help but notice how I've changed.
Opening up my world to a wider range of difference in others has meant that there's more room for me to be me. It's easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.
Recently I've felt the need for a more specific vision around early adulthood. The countdown to adulthood begins early for kids who need lots of time to learn and prepare. It's time to make tough choices about skills and goals. Where should he spend his time and effort? Is it important that he learns to read, or is it a better use of his time to go the store where he can practice social greetings, handling money, and navigating his neighborhood? This kind of parenting isn't for the faint-hearted.
So last night my 10-year-old child and I were sitting at the kitchen table filling out back-to-school paperwork, and they mentioned that they had had a dream in which their older brother didn't have Coffin-Lowry Syndrome. They proceeded to tell me of the zany antics that can only ensue in a dream world. I've had a couple of dreams too in which he is neurotypical and I have woken up feeling shaken.
I think sometimes we special needs parents are getting the wrong message. We're told that if we want to be effective, we should be the mama bear — fierce and protective. Or the victim, sad and pleading. The course leader's parable reminded me that I have other options, ones that actually might be more effective than anger or sadness.
A guest post from Elizabeth, mom of two. "Creating my map helped me reconsider my own role in my son’s care plan. I have come to see myself as the central facilitator between many separate agencies. With this awareness, I’ve been able to better communicate with my son’s practitioners and more actively embrace the myriad tasks of care management. The exercise allowed me to step back and view Charlie’s system of care with new perspective. I found comfort in all these little circles, each representing a different system working to support my son and our family."