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!
Hello Friends, I’m in Nashville on the first morning after a mom’s conference. Not just any mom’s conference. The Rockin’ Retreat. They call it a retreat because it can involve pampering and moms are encouraged to unwind. That said, I saw a lot of learning, a lot of looking for answers, a lot of partying, a lot of hugs, a lot of adventures, a lot of supportive words, a lot of…moving forward.
In fact, as I began writing this morning I thought about the word retreat and its first defination, which is “an act of moving back or withdrawing.” And I reflected that nothing I’ve seen in the women I’ve met over the last few days invokes a sense of retreat. At all. Not even a little.
The two other years I’ve been able to join this party, I’ve been the mom with the oldest child. (We always clarify, “Moms of older kids” not “older moms.” Words matter! Ha!)
I’ll be sharing this year about writing/blogging and advocacy with storytelling. I’m on a panel with other moms of older kids. And I’m giving a big speech on self-care.
Let’s go back several years, no need to count how many, to the August of my 18th birthday. I had graduated that Spring, moved “away from home”, was legally (almost) an adult (19 is adulthood in the state of Nebraska) and excited to embrace two civic duties now available to me: 1) Vote* 2) Give blood.The first was easily registered, the second wasn’t. Turns out to give blood I had to be 18 and have certain healthy weight and blood pressure qualifications, which I did not. I even tried to negotiate with the nurse, to no avail. I'm asking for two things for my birthday this year, read on to give one.
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