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

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!!!

So I've Started a Thing...

A few weeks ago, I went to a writer's conference.  It's the third or fourth time I've been there, and this year I was on the conference committee, so I knew what to expect.  Plus, I went with two sisters, so we were excited

A few days prior to the conference, one sister mentioned she'd signed up for a pitch session (to pitch a book she was working on to a publisher or editor), but her book wasn't ready. She'd already paid the money to pitch, and would I like to pitch in her place.

"Uhhh. Sure." I said as my mind raced about a million miles a second.  The person she planned to pitch wasn't in my usual genre (contemporary and speculative YA). This person preferred non-fiction, religious, and sweet romances. 

But I did have a non-fiction story I'd considered writing for the past seven years.  I even had a name picked out and a writing partner who would co-author with me. I'd already gone so far as to submit my first 500 words to a Beginning of Book Contest at the conference. Just for kicks.

Where most novels need to be written and polished before you pitch the book, non-fictions usually require the first three chapters and a proposal.  If someone wished to publish, then you'd write the book to the publisher's specifications.

Could I pitch a theoretical book I hadn't completed, or even written a proposal for? Sure. What could possibly go wrong?

I should have asked: What can go write? (pun intended). 

I sat down for my pitch surprisingly calm for a person who had no idea what she was going to say. My pitch went something similar to this:

From the day I found out my unborn child was going to have Down syndrome, nearly every person who found out apologized and gave me condolences.  My doctor was required to tell me about abortion options. My mother was speechless.  Everyone treated me as if having a child with Down syndrome was some horrible tragedy.

However, I knew having someone with Ds was the gold standard in disabilities.  I knew he'd enrich our lives, and bring joy to our home.  He would be a blessing.  My doctor gave me books, and I bought books.  All of them were the same.  Nearly every story talked of how the parents were shocked and devastated, but then learned to love their child.  I threw the second book I read against a wall and refused to finish it.  It listed all the things that could go wrong with my baby, and nothing that could go right.  Nobody bothered to point out that every child--whether typically developing or having Down syndrome--has a spectrum of abilities.  Every child has risks. 

Now, other countries actively work to completely eradicate Down syndrome from their society through abortion and other means, as if it's some disease or curse.  Drug companies hope to "cure" us of Down syndrome. 

If everyone treats Down syndrome as a trial, a challenge, or an "issue" to be dealt with, of COURSE the general public will treat it with trepidation and fear.  But Down syndrome is none of these. 

Any and all growth requires being uncomfortable - physically, socially, or emotionally.  When you work out, don't your muscles hurt? When you go to school, don't you have to study? When you strive to better your craft, don't you have to learn, fail, and learn some more?

My story will be my declaration that having a child with Down syndrome is not a bad thing. It is something to be celebrated and excited for.  I don't want anyone to offer condolences for having my child.  There is nothing to fear. Nothing to apologize for.  And so so much to be excited about.

I want to write a new book that defines Down syndrome. And that book will be named, "Take your Condolences and Shove it." It will celebrate Down syndrome and all the good having a child with Down syndrome brings to lives, families, and communities.

Needless to say, she wants to see it. All of it.  Not the typical three chapters usually requested.  She wants me to write the whole book and then submit it to her. She doesn't care how long it takes. She will wait.

So, as I write my book, I'll be blogging more often, keeping you updated on where things go with the book.  And I hope to introduce you to my two co-authors (Wahoo! Three moms with three perspectives on raising children with Trisomy 21!).

If you have ideas on things I can include, or comments you'd like to be included in my book, please post them below! I'd love to have more than just three voices telling this story. 

Until next time...

Susan