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!
In 2015 I said, I want it all. (Also, I said Publish)
In 2017 I said, Patience.
In 2018, I say: Produce.
(Also, Stretch. And Clear. But these aren’t as alliterative, so they’re forced to be a subtitle.)
I’m still a little tired from 2017, recovering from a good, no – more than good, a seriously incredible line-up that 2017 delivered. (Holy cow, where do I even start on the links? Try this.)
Every year I say I’m scaling back on this or that, every year my husband doesn’t believe me, and I defend that he has no idea how many requests and opportunities and just plain “I should totally do THIS” ideas are presented to me from both others and my own busy brain.
Well, he may have some inkling, since he’s an idea man, too,
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
In about 5th grade I thought, “I hope when I have a daughter she’s not too pretty. Pretty girls…they don’t understand anything.”
In fact, when I was pregnant, of all the things I feared, I feared having a daughter.
I had one big birthday party when I was 6. It was a whopper, my whole grade was there. We ran across the lawn with raw eggs on spoons. There was a huge array snacks and more games. A long table made of planks and concrete blocks, perfect for 6 year olds to fit around. The radio was on while we had cake and the DJ dedicated, “Puff the Magic Dragon” to me at just the right time. It was nuts.
The next birthday party I had was at 16. It was also great.
In between, I
Marcus’ Big Night
at the Be Beautiful, Be Yourself
included a tribute video.
To start with, Marcus gave a speech in front of 1200+ people under the spotlights. (That speech is here). He spoke to journalists and faced the flashing cameras on the runway. (One of my favorites is here). And he ROCKED the runway. Marcus and the Stars!
Like most successful, public events, it came after a lot of practice. He practiced his speech. He practiced his model “moves.” It also helps how many big events he has been a part of this year, TV interviews, speaking at the UN, and “gigs” teaching kids and grown-ups in classrooms and libraries across the country. This one was, and we knew would be, different in a few big ways. The most critical is the sheer energy and emotion