Wednesday, September 15, 2021

Surviving COVID when you have Down syndrome and other updates

 Hey, everyone!  It's been  long time since I've written and I realized that not writing my blog means that I'm forgetting important details about Jacob's life.  So, I'm back.  Did you miss us? 


The last couple of years has been crazy busy for a number of reasons.  Obviously, COVID has played a factor. Who hasn't been affected by COVID, right?  

For Jacob, it meant pulling him out of school completely.  He has already been sick for several weeks prior to the schools shutting down in March (I'm pretty sure it was COVID--all of us had it, and I'd nearly gone to the hospital because I couldn't breath.  BUT we all survived.  I've never been the same, but I digress.)

With the mask mandates, and Jacob's underlying conditions (heart patient, overweight, sleep apnea, all the good stuff) we didn't want to risk him getting is (again?). And there was NO WAY we could get him to keep a mask on. So...No school. 



It was a hard transition. He loved seeing his friends and his teachers, but the mandates were not designed with children like Jake in mind. Now, nearly two years later, and we're still out of school.  Jake is 100% ABA, which takes up 6 hours/day--or the equivalent of a school day. 

Two years ago, he was basically mute.  He could say one or two words, but most of his communication was sign.  On Sunday, he said a four-word sentence without prompting.  We're seeing progress!



Since we've been gone, Jacob's big sister had a baby!  So now, Jake is an uncle!  And BOY does he love that child!  He would follow him around and play with him all day long if he could!  He's the ultimate doting uncle.  And Baby Ben adores his uncle!


Also, you know that story about Jake I wanted to publish?  I did. 
 
Sort of.  

It's part of an anthology.  And it's a short story--about 5,000 words.  It's the beginning of what my nonfiction will be when I get it published.  Yes, I still plan on publishing it. it's just taking longer than I wanted.  Life happens that way, you know?

If you'd like to read the story, It's part of the ANWA Anthology. All proceeds go to their scholarship program.  


Read this book NOW.  It's FREE on Kindle Unlimited!


I will be back.  MUCH sooner than last time. I promise.  As COVID rages on, and I continue to deal with the ramifications of how that affects Jake and others like him, I feel compelled to speak up and let other understand that he shouldn't be pushed to the back of the line or ignored. 

But more than that, I want to document all the amazingly wonderful things that are Jacob.  Down syndrome is only a sliver of who he is.  And I'd love to share it with you. 

Until next time...

Susan













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