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The Video Of Marcus Speaking at the United Nations

2019-06-16T10:01:10-05:00Categories: Grown Ups & Downs, In the News|Tags: , , , |


For real.

If you want #BlackDayBook and Grown Ups and Downs updates, not too often – I promise, Join the Club here!

Here’s what we said:

Listening to Self-Advocates: Relate, Respond, and Amplify

(Marcus parts in bold)

Ladies and Gentlemen, I’m Marcus Wright Sikora.

I wrote a book called Black Day: The Monster Rock Band.

I’m a storyteller, an actor, and a singer.

I’m glad to be here with people from around the world  

talking about Down Syndrome.

New York City is my favorite.

This is my mom, Mardra. She’s a writer, too.

Some of the Marcus Equation

2023-12-05T17:48:27-06:00Categories: Grown Ups & Downs|Tags: , , , , |

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 when he was maybe three or four years old. 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 would not.

At one point, the psychiatrist held before Marcus a doll with

Marcus’ Three Lock Down Lessons (Or How’s Marcus Coping?)

2020-08-08T13:36:50-05:00Categories: Grown Ups & Downs|Tags: , , |

“How’s Marcus coping with all of this?” A common question from friends, family, coworkers and colleagues. One concern folks have is for his social well-being. Because many see Marcus as a very social guy, especially those having experienced his exuberant love for a good party or his enthusiastic greetings which light up any room. He does enjoy learning, travel, and working, for sure. However, he is also, by nature, an introvert, so the alone time mixed with occasional online social activities suits him fine.

Marcus, Aristotle, and Douglas Adams Advice

2020-06-28T18:09:59-05:00Categories: Grown Ups & Downs|Tags: , , , , , |

In my young adulthood, I frequently said, “This is no time to panic…” Often at random moments, to no one in particular, mostly at work. 

After reading the book series, The Hitchhiker’s Guide to the Galaxy, then seeing the classic BBC TV of the same name, the simpler phrase “Don’t panic” including a cheeky smirk and a deep sigh is a common refrain in my household. 

The first time I recall Marcus purposefully using the phrase “Don’t panic” was a memorable audition night in Denver seven or so years ago. 

Marcus Sikora Global’s 2017 Ambassador Video

2017-11-26T09:50:00-06:00Categories: Grown Ups & Downs|Tags: , , , , , , , , |

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

Marcus’ Speech at the Be Beautiful Be Yourself Event (Video)

2018-12-02T11:45:16-06:00Categories: Grown Ups & Downs|Tags: , , , |

SO, it’s been a week now.

One week since Mr. Marcus Sikora did his second runway walk at the Be Beautiful, Be Yourself fashion show. I can tell you now that at the event last year, Marcus told me that he wanted to give his own speech at this event. That it was not my idea. I even, gently, asked him a few times, “Are you sure?”

His answer, “Yes.”

So, he did.

Marcus in a top hat speaking at the podium of the Global Down Syndrome Event

We shared the video of his

Marcus Makes the Most of Every Meeting

2017-08-30T11:17:05-05:00Categories: Grown Ups & Downs|Tags: , , , , |

On Tuesday, March 21st, we met people from around the world. Marcus gave copies of Black Day: The Monster Rock Band to a person with, or a family member of a person, with Down syndrome from Italy, Algeria, Mexico, Canada, and the US. 

World Down Syndrome Day at The United Nations

We listened to the advocacy challenges and wins of our worldwide Down syndrome community. The mom from Kyrgyzstan, and her brave story.  Advocates from Romania and Palestine and more. and Always, my favorite part of the WDSD at the UN is hearing from the self-advocates,

Marcus and Moving Mountains

2017-03-05T12:01:35-06:00Categories: Grown Ups & Downs|Tags: , , , , , , , |

PJs and SchoolThis last Tuesday Marcus and I travelled to Bennington, NE. We shared the animated short and book Black Day: The Monster Rock Band with the students. The kids were all in their pajamas as it was “pajama day.” And also Dr. Seuss week. So the PTO invited a local author in to tell his story. 

Big Kids Classes

Also, with the “big kids” Marcus and I talked about what makes a good story, the importance of set,

Where Marcus talks about Me

2019-07-26T19:33:38-05:00Categories: Grown Ups & Downs|Tags: , |

 

2016-MarcusMom Hug-053Marcus isn’t always great at direct question and answer. Prepositions and pronouns are sometimes hard for him to grasp and answer. Directions like up/down/under…are very hard for him. However, he’s very good at grasping abstract thought, he has communicated/shown me this for years in ways broader and bigger than just words.

This is part of why I decided to share this fun experiment here – because you can really see his capacity for perception in ways bigger and broader than just

Speaking of the Process…

2015-06-18T09:10:43-05:00Categories: Black Day, Grown Ups & Downs|

Earlier this week I lamented about how difficult I find it to write about the writing process with Marcus. As is the current custom the lament was shared on Facebook, here’s part of it:

Today I’m trying to get “on paper” the process of creating Black Day. I’ve written bits here and there about what writing with Marcus is like. I don’t know why it’s so hard to capture. Because on the one hand it’s pretty simple: He tells me dialogue, action and setting, and I write it down. On the other hand, art is

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