The Real Challenge

What One Young Man with Down Syndrome Wants You to Understand

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Yesterday I learned a little bit about a man with Down syndrome named Stephen, and his mother, who wished he had never been born. I don’t know much except what I read from a tabloid article written by his mother. When Stephen was very young, about three years old he cried in the night, a lot. He cried for many hours because of…Pain? Confusion? The article did not say, it was not his story, it was his mother’s, so we learned that she

2018-02-10T10:23:44+00:00 Categories: Grown Ups & Downs|Tags: , , , |15 Comments

Some of the Marcus Equation

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

2017-12-17T12:58:32+00:00 Categories: Grown Ups & Downs|Tags: , , , , |4 Comments

How Alike Do We Have to Be?

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.

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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

Marcus Sikora Global’s 2017 Ambassador Video

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