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Archive for the ‘Grown Ups & Downs’ Category

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 […] ...read more

I Will Not Let Spring Break Me

  Although it tries. Spring and Easter, Man, a lot of shit happened in my life around Easter. Grandmas Several years ago at this time of year, I lost my Grandma Wright at the end of a long cancer battle. Her death came shortly after my beloved great-grandmother from my mother’s side also passed away. One […] ...read more

Special Chronicles PodCast

While Marcus and I were in NYC, we joined Dan via technology, and chatted about WDSD, Black Day, The Parent’s Guide to Down Syndrome, and also the #NotSpecialNeeds campaign. Pop it in while you’re running, walking, cleaning the house, or whatever it is you do while listening to a podcast. 🙂 In preparation, watch the […] ...read more

#WDSD17 More deets from the day and pictures, too

So first we have the Storified version with my tweets and also the WDSD Twitter live account of our speech. Plus links to a few of the great #WDSD17 videos. Also, a short slideshow of pictures. ...read more

Marcus Makes the Most of Every Meeting

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 […] ...read more

The Video Of Marcus Speaking at the United Nations

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 […] ...read more

Marcus and Moving Mountains

This 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.  […] ...read more

Marcus’ Big Announcement #1

You know what didn’t cross my mind in those hours after my son was born and nurses spoke in hushed tones while a social service worker hovered outside my hospital room…when certain family members chose to scoff at certain other family member’s expression of love over doom? The United Nations. On June 20th, 1990, I […] ...read more

Unexceptional Moms Interview Marcus (Video)

Guys guy GUYS!  I don’t think I ever showed you this interview. A great podcast and video interview with two moms, plus Marcus (and me too.) One mom I’ve known virtually Ellen Stumbo.  She has a beautiful blog, I’ve been lucky to guest on now and then. And now she and and Erin, another mom, […] ...read more

Mystery of Marcus

The Bates Motel asks: “What mysteries do you want to see unraveled for the future for your child with Down syndrome?” That’s a heavy question and one that I hesitate to answer via the internet. But that’s why we’re here, right? To shed light and truth. Yes, it is. SO, I will continue and you can and should look around at the blog-hop links below. This community is nothing if not prolific. :)

I purposefully waited to write my thoughts until after attending a webinar provided by the Global Down Syndrome Foundation and DADS (Dads Appreciating Down Syndrome) about research and Down syndrome. Two primary scientists spoke, I think most of it was English though I can’t actually confirm. Some of the words could have been Greek.

That’s a joke.

Mostly.

The information included a lot of talk about chromosomes, and genes, and cells and proteins, especially the amyloid precursor protein. This particular protein is a culprit and connecting factor between Down syndrome and Alzheimer’s disease. That’s the way I heard it anyway.

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But most of that mystery, I must leave to science. I have a squishier wish than that...

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