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 have been riding with no hands when it comes to special needs parenting for some time now, ever since our huge move has had my attention elsewhere--getting a job, a place to live, a dog, converting recipes into metrics and Celsius. With so much to take in, I took my hands off the handlebars, trusting that the people around me would keep us safe (a correct hunch), that my mom detectors would sound even if 99% of me was caught up with figuring out the recycling rules of my new homeland, that I would take the handlebars again when it was time.
This weekend we took a trip to my husband's family's summer house. On the long…
When you are parenting a child with special needs, learning how to communicate clearly with teachers, doctors and other professionals is a critical tool. Good communication helps the person we're trying to talk to understand all of the facts of the situation as well as what we need them to do. It's not that they don't care about us or want to rush us, but sometimes too much information makes it hard for them to know how to help.
We have been in crisis. And I am good at crisis. As a parent of a child with special needs, I'd have to say I feel comfortable there. After years of wishing to be done with the drama of crisis, recognizing a pang of nostalgia for it makes me stop and think.
It's not Groundhog's Day here in Sweden but that won't stop our family from the annual viewing of the Bill Murray classic. Tonight we'll snuggle on the sofa while Bill awakens to Sonny and Cher for about, according to the DVD comments, 1000 years or so, reliving the same day until he gets it right. When I first saw the movie years ago, it was merely a funny, clever film with wry Murray wit and all that Andy MacDowell hair. Over the years it has become a story of engagement.
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.
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.
On one side is you -- with your skills, your strengths, your resilience, your smarts, your capacity. On the other side is what life throws at you -- work, relationship needs, illness, a bad economy, whatever. The distance (actual or perceived) between what you can do and what life needs you to do is the Gap.
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."