Fragile X in Fiction and Real Life

Fragile X in Fiction and Real Life

This post is going to be about both my experiences with Fragile X as well as how Fragile X is portrayed in my forthcoming YA novel, DEVIL SPRINGS. (And if you want to skip to the punchline: it’s a spectrum disorder so my own son’s Fragile X and the book character’s Fragile X are vastly different.)

When I Think About Russia

We 80s kids were the last to live our childhood during the Cold War. I can remember when Reagan said, "Tear down this wall!" to Gorbachev. I have flashbulb memories of the footage of the wall coming down, my German mother crying. I was in Germany the next summer, collecting pieces of the wall for myself. I still have them, along with some barbed wire and glass broken out of the guard towers. I witnessed the pollution and the poverty of the east at that time. I could not believe that I had relatives who had to live that way.

Jump ahead: When Kevin and I were in Volgograd, formerly Stalingrad, in 2005 we were told that you could still dig anywhere in the city and find bones because of the 5-month-long battle that had waged there between Germans and Russians in WW2. I wondered if my distant ancestors would consider me a traitor for adopting a Russian in this area into my own family. But if the stories I'd heard were true, not glossed over or revised to be on the right side of history, no one in my German family supported Hitler, in fact worked to subvert him, so I'd guess they'd find irony and humor in it. The living relatives certainly didn't care.

Before we physically had Kaden, we were essentially tourists in Russia, seeing the sights, shopping, and hitting every restaurant because we ate out every single meal, but we were warned (and warned and warned) that once we had Kaden to lay low, stay in our hotel. Russians resented Americans adopting babies, had been known to call the police if a child in their care was crying for any reason. They held suspicions that we were bringing the children home to be slaves. We followed the advice... sorta. We sometimes ventured out quickly for food but dined in the hotel more often than not. We did use a translator to show us the Kremlin, and when we realized a Russian family we knew from The States happened to be in Moscow we went with them to the zoo.

Another jump: In 2012 Putin ended all American adoptions of Russian orphans in retaliation for the U.S. Magnitsky Act. (Google it). Since then I almost never say Putins name out loud without putting the word "pissy" in front of it. Pissy Putin has a nice, condescending ring to it, don't you think? 

This September: I read Ruta Sepetys's Between Shades of Gray and learned of a Stalin atrocity of which I'd never known--how Lithuanian intellectuals were rounded up in the early 40's and shipped to Siberian labor camps and even the South Pole to be silenced. (And after the election I wondered do I, like Lina's mother, now have reason to sew bribes within the lining of my clothes?)

And now: My oldest may have been born in Russia, we may have photos with Mother Russia and beautiful souvenirs, but we still recognize the evil in Russia's history and the present.

This very night: For a project, I was looking up both Donald and Hillary quotes from before election day. Oh this gem from the 3rd debate: “I actually think the most important question of this evening, Chris, is finally will Donald Trump admit and condemn that the Russians are doing this and make it clear that he will not have the help of Putin in this election, that he rejects Russian espionage against Americans which he actually encouraged in the past?”--HRC

Are we paying attention? Do we think there will be folks tried for treason for involvement and/or corrupt reasons for not following through with this Russian investigation prior to Nov 8th? Could one of those people be our president-elect? Is this bigger than the spying scandal that was Watergate? Whether it is or isn't--will it all blow over before we can know because of the power of the quickly re-filling swamp?

So yes, I think about various histories and if they even matter. 

But also: that I will remain a person who cheers when walls come down and not when they are built, when treason is exposed, when the guilty face judgment and receive their due consequences. 

And with all of this happening during the backdrop of Advent, I know I will cheer loudest when "the things of earth (particularly its corruptions and cruelties) grow strangely dim, in the light of His glory and grace." Come, Lord Jesus.

In the Kremlin--little K in front of the world's biggest bell.

In the Kremlin--little K in front of the world's biggest bell.

Our Read Aloud Books in 2016

Kaden (12), Blue (10 now, but 9 while reading these), and I still read children’s literature out loud. I started it because Kaden isn’t a strong reader but was ready for older kid stories. Without the support of our read-alouds, he still couldn’t access these books. Although I do the majority of the reading, their turns help with fluency/practice at reading with expression, my chance to correct their mispronunciations, my chance to correct Blue’s habit of speed reading that causes him to make up words. It also allows for occasional vocabulary explanations. (Of funny things—I realized that my boys had no idea what it was talking about in Harry Potter when it mentioned a “four-poster.” They couldn’t even guess it from context clues.)

Here are the books we covered in 2016:

From the Mixed up Files of Mrs. Basil E Frankweiler by E. L. Konigsburg
I couldn't remember if I'd read this as a kid or not, so I wanted to. Alone in a museum at night. Stuff doesn't have to come alive for that to be awesome.

Amy Carmichael: Rescuer of Precious Gems by Janet and Geoff Benge
Back when we finished this I made Blue give me a quote for goodreads and he said, "Any kid who likes nonfiction and wants to be inspired to help people will love this book.”

Listening for Lucca by Suzanne LaFleur
We picked this because Ms LaFleur was slated to be at the April is for Authors event in West Palm and I wanted the boys to be familiar with the works of as many of the authors before we went.

A Snicker of Magic by Natalie Lloyd
Another April is for Authors speaker. Natalie tells kids, "Your words are magic," and "your life is the best story you'll ever write." She is a lovely positive role model with a very adorable dog named Biscuit. If you haven't already, check out her books for sure.

Teslas’s Attic by Neal Shusterman and Eric Elfman
Shusterman was April is for Authors keynote speaker. The boys attended this as well as a session that Shusterman and Elfman did together about how they collaborated. They loved this book AND that session!

The BFG by Roald Dahl
Had to read it before the movie came out.

Harry Potter and the Goblet of Fire (Book 4) by J.K. Rowling
We have done the first three as read alouds in year’s past. The boys aren’t allowed to watch the movie until we’ve read the book together.

A Wrinkle in Time by Madeleine L’Engle
I picked it before I ever knew about the movie that’s in the works.

The Secret Horses of Briar Hill by Megan Shepherd
There was enough buzz around this book that I bought it on release day. It was compared to The Secret Garden and… that’s all it takes apparently for me to say, “Take my money!’

And for our final book—which we’re starting today:

The Watsons Go To Birmingham by Christopher Paul Curtis
The kids went to Birmingham for Thanksgiving but all we did was hang out with family, see Fantastic Beasts, and visit a botanical garden. I’m eager for them to read some history about a place that, for them, is just about visiting cousins.

There is not one dud in this list, and I’m proud that I took them through nine books with a range that included two 1960s classics through a book released in October of 2016. I’m thinking we can do better than only one non-fiction in our 2017 picks, but other than that, I think we came up with a nicely eclectic list for 2016. We bought all of these books, and I love seeing the boys going back through them once we’re done. Blue, especially, is a big re-reader.

I recommend all of them, but of these books Blue says he liked Tesla’s Attic the best because of the crazy inventions. Kaden says he liked The BFG best because of the silly words, giant world and how the bad giants get trapped by the military.

Upcoming for 2017: We might still be finishing The Watsons Go to Birmingham. After that I think we’ll do R.J. Palacio’s Wonder, and then after that I’ll probably look to the April is for Authors line up to choose a book or three. 

Do you read aloud with your older kids? What have been your kids’ favorites?

Denali Summer: How and Why

Denali Summer: How and Why

In the event that you read DENALI SUMMER (or whatever it will end up being called), here's how it came to be:



Being a Fan

Being a Fan

In April my friend Kendra, a friend formed in church youth group in high school, continued in college, and maintained with occasional lunch and dinner dates through the years, died of pancreatic cancer. Her death occurred about five months after her 40th birthday, about sixteen months after diagnosis. About two months since her death, that is still hard to type out.