Following the “rules of blog” – I sometimes share moments from then (we have 27 years of material to choose from) and I share moments from now. If I leave you with a question in this down syndrome blog, feel free to ask it. If I leave you with a revelation, feel free to share it. If I post a general rant or big news that has nothing to do with Marcus, well, that’s the blogger’s prerogative.
Here are some blogs or subjects to start with. Or just scroll down for our most recent adventures!
When you have a child with an intellectual disability the tests come early and often. Medical tests, intervention tests, IQ tests.
IQ tests are the worst. On the parents. I’ll never forget Marcus’ first IQ test, he was three. He communicated mostly with action/expression and sign language. But not that day, well I take it back. He was clearly communicating, just not compliant. An important differentiation that, as his mother, I could see but the Ph.D. in the room clearly could not, Or did not.
One moment that stood out, the psychiatrist held before Marcus a doll with its head off, laying in her hand next to its body. She held the decapitated doll and asked, “What’s wrong with this?”
Oh! Let me count the ways! I thought. “What are you trying to achieve here?” I asked.
“It’s a standard question,” she defended.
“Great. Some doctor
I remember emotional points, touch the bruises, and swim in the revelation. However, I have a terrible time trying to remember dates. At what age did I learn to ride a bike? When was my first road trip? Even important moments, like when did my son take his first steps? When did he begin using complete sentences? Or when did he start, really start, to tell me the stories that play through his imagination? Marcus just turned 27 and I think I’ve been saying “for over ten years” for three, maybe four, years.
I could dig back into the notebooks. There are so many notebooks. Most writing sessions begin with Marcus rubbing his hands in anticipation and exclaiming; “It’s time!” Then he’s off – dialogue, characters, and action coming fast and furiously. Me
Marcus dropped one of his wisdom bombs on me while we were at our favorite coffee shop. We’re regulars at one particular Scooters where they are nice to us. The general public, on occasion, puts me on edge. You see, I’m a bit paranoid and particularly attentive to how folks look at and react to us because Marcus, my adult son, has Down syndrome, and the patrons and employees at this Scooters tend to acknowledge Marcus but not bristle, are nice but not patronizing, a surprisingly tricky balance for some.
That month a website called The Road We’ve Shared was preparing to “spotlight” Marcus. So while we sipped our hot drinks, I asked him a few questions, finding out some of his favorite things to include in the note.
I learned that Marcus’ favorite Muppet is Walter (the new guy).
Don’t tell me it’s “just a show.” The threat that there are humans who desire to eliminate those who are, “nothing like the rest” is and always has been real.