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













Wednesday, March 13, 2019

Dear Parents of Children with Down Syndrome...

I've always known I'd write a book about Jacob. 

I knew it the moment he was diagnosed with his disability.

I knew it before I knew I'd become a writer.

His story needed to be told.

This year is the year I will put this knowledge to action.  And, in true Allred fashion, I'm going overboard. 

I'm writing not one book (as blogged about before), but two. And I'm outlining a third book. This is in addition to the four nonfiction books about growing up in a family of ten that I'm re-releasing on Amazon, the six-book YA thriller series I'm self-publishing, 2 anthologies I'm participating in, and a YA urban fantasy I hope to pitch to a traditional publisher in June.

Am I insane?

Probably. Yes.

I've been putting off my "Jacob" books for years, telling myself I'd find time later.  But in light of all the abortions based off a Trisomy 21 diagnosis, and some countries even trying to eradicate Down syndrome completely, I can't put it off any longer. These books must be written NOW.

With that being said, I'm putting a call out to any and all parents of children who have Down syndrome.  I'd also like a select few people who don't have kiddos with Down syndrome but are closely affiliated with them - Special Education teachers, brothers and sisters, aunts and uncles, doctors and nurses, therapists, etc.  I'm looking for letters.

Why?

Because when Jacob was diagnosed, I was inundated with condolences. "I'm so sorry." "I don't know what to say." "What are you going to do?" Sometimes silence and shock.

Where were the congratulations and squeals of excitement I got with my other three children?

I aim to fix that with this book. This will not be a book filled with, "I was horrified and then I learned to love my baby."

This book will be, "Congratulations on having a new baby!  Your life is about to embark on a new adventure. And it will be amazing!"

 Am I going to candy-coat everything? Nope. But my emphasis will be on looking at the good rather than obsessing over the possibility of bad.  Embracing the similarities rather than freaking out about the differences.

If you're interested in being a part of this letter, I want to hear from you!!!


Monday, December 17, 2018

Early Christmas Presents

Today I picked Jacob up from school and his teacher met me at the sidewalk with three bags in her hands. "These are his Christmas gifts.  One was a donation from a nearby church. The other two..." she shook her head apologetically. "He chose them. I swear!" She shrugged and rolled her eyes. 

I thanked her profusely for the gifts, and ushered my kids back to the car, thinking nothing more of the comment.

When we got home, Jake snatched the gift with his name on it and ripped it open before I could get it under the tree.  Nerf guns and candy.  No wonder he was excited! 

I peeked inside and furrowed my brows before pulling out a leather day-planner from one bag, and a hand-made tissue holder in the other.  I looked at my daughter, and she looked back at me, equally puzzled. 

Jacob stopped playing commando with his Nerf gun and walked over to me, took the day-planner,  and nudged it toward my chest, indicating it was for me.  Then he did the same with the tissue holder.  He smiled briefly before returning to his Nerf gun and taking off toward the cat making shooting noises.

I stared after him, then at the gifts. He picked those gifts out for me? 

My heart swelled as I thought back over the last four weeks of sneezing and runny noses because of my allergies to our new cat.  He'd often brought me tissue whenever I sneezed. Had he thought of me when he saw the tissue container at school?

But the day-planner? Maybe he saw the two calendars I have on the wall next to my desk or the shelf of tabbed folders for each project I'm working on. Or maybe he just associated it with books because I have hundreds of them in my bookshelf, along with binders for my mystery game business, novels I'm editing, or half-written novels I'm writing.

I don't know what was going through Jacob's mind when he chose those two gifts. But he was clearly thinking of me. 

For the briefest of moments, I realized there is much more going on in that little mind of his than I give him credit for.  Though he may still be non-verbal, he is very aware of us. Of me. Of his family, and all those he loves and cares about. 

As he drifted off to sleep tonight, I hugged him extra tight and thanked him for his gifts.  He held up his hand, dropped the middle two fingers, and signed "I love you" before rolling over and closing his eyes.

This year, I got the most amazing early Christmas gift: Hope.