adult with down syndrome Archives

Everyone Needs Help
Everyone Needs Help

Everyone Needs Help

A Gift From the Universe to Change the World

My son, Marcus, and I have had many writing sessions and meetings with collaborators at our neighborhood coffee shop, particularly while we were working on his first book for children and the accompanying animated short. We also wrote the speech we gave at the United Nations building there earlier this year. Today I write solo and the notebook to my right has the lyric, “The universe is resting in my arms” (from Nina Gordan’s song “Tonight”) written and

Mardra2020-06-16T07:17:43-05:00Categories: Grown Ups & Downs|Tags: adult with down syndrome, BBBY Ambassador, Be Beautiful Be Yourself, Black Day, Down syndrome, Global Down Syndrome Foundation, Marcus Models, Marcus Rocks, Marcus Speaking, Marcus' Wisdom, United Nations|5 Comments

I Cried Every Year on My Son’s Birthday
I Cried Every Year on My Son’s Birthday

I Cried Every Year on My Son’s Birthday

I cried when he turned one and I knew heart surgery was on the horizon. I cried when he turned five and we were fighting with the public schools. When he turned 11, and…Why did I cry when he turned 11?

I sat next to my dad and said, “My birthdays don’t bother me. His make me a wreck.”

“That’s because you’re getting old.” My father suggested with his normal tact and

Mardra2020-06-13T17:55:41-05:00Categories: Grown Ups & Downs|Tags: adult with down syndrome, adulthood, birthday, Celebrate!, now, worrying|20 Comments

Covid-19 and Down Syndrome: Starter Info
Covid-19 and Down Syndrome: Starter Info

Covid-19 and Down Syndrome: Starter Info

Who knows?

I think it’s natural, as a parent, to try to – to want to – protect. Therefore, sometimes we don’t address issues, important stuff, that needs to be faced together, because we don’t want to share the burden of knowledge.

That said, If there’s anything I’ve learned as Marcus’ mom it’s this: never assume he doesn’t know or won’t understand.

Early, often, and honest explanations are important to Marcus’ ability to cope with difficult

Mardra2020-05-06T19:21:50-05:00Categories: Grown Ups & Downs|Tags: adult with down syndrome, CovidImpact, down, Down syndrome, Finish the Sentence Friday, Photo Prompt|2 Comments

Our Story of Down Syndrome: The Short Version
Our Story of Down Syndrome: The Short Version

Our Story of Down Syndrome: The Short Version

For the first 21 years or so of Marcus’ life,

“Down syndrome” didn’t really come up,

and I kept our privacy setting as restricted. Not that I was hiding, I just wasn’t sharing. Why? Well, one reason is because most of those years were pretty, how shall I say this?

Boring.

Not to me, you understand. But to an outsider. Seriously. What exactly is so exciting about going to work and going to school and living in Middle America? Not the stuff of reality TV programming. And I was

Mardra2020-02-17T16:06:03-06:00Categories: Featured on Grown Ups, Grown Ups & Downs|Tags: #WDSD15, adult with down syndrome, Down syndrome, Down syndrome awareness month, life matters, now, then, words matter, World Down Syndrome Day|13 Comments

A Gift From the Universe to Change the World

Who knows?

“Down syndrome” didn’t really come up,

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