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

Starting Second Grade Already?

He's off! Jake just boarded his bus, bound for second grade, and I'm not gonna lie.  I'm doing the happy dance!  Today is the first day in MONTHS that I've had all to myself. I'm resisting the urge to go back to bed.  I have way too much to do to catch up after an entire summer with kids in tow.

This summer has been amazing though.  After an ENTIRE SCHOOL YEAR in which the teacher did nothing.  I kid you not. Nothing.  I'd walk into class and find kids standing on the table, others running around, shelves cleared, and no work being done; Despite countless meetings and discussions with principals and Directors of Special Education, therapists, and everyone I could talk to, Jacob digressed instead of progressed last school year.  There was no inclusion last year.  How could we when he had begun hitting and spitting again? When he was found in the middle of a five-lane road, within feet of an active railroad line, and at a school that borders a highway? I spent most of last year clawing my out of a pit created by a teacher who didn't care about the progress of the kids.

I may have cried when I found out he was getting a new teacher--one he'd had in preschool and is gung-ho about making sure the kiddos have the best education possible.

The second Jacob started Summer break, I went about the business of fixing everything that broke during school.  We went to a developmental neurologist who recommended a book, "1-2-3 Magic" By Dr. Thomas W. Phelan - Because it's 18 months later and we STILL didn't have an ABA provider for Jake. Two days into implementing the book, and we began to see results.  MAJOR results.

He went from flopping and throwing tantrums for thirty minutes at a time, kicking, screaming, spitting, and attempting to bite, to 10 seconds of showing displeasure, then complete compliance.  No drugs (he was diagnoses with ADHD and they wanted to put him on Ritalin). No spankings.  No arguing. No frustration.  He is now manageable. Hallelujah!

He's beginning to talk too.  When he gets made, he'll sign entire sentences to me, which I try not to laugh at. But it's so darn cute to see him scowling as his little hands are gesticulating wildly telling me why he's upset. I love it!  When he speak,s he signs and tries to speak the words at the same time.  Every day he gets a little bit closer to being understandable. And he's gone from saying one syllable of one word, to trying to say two or three words at a time.  It's glorious!

His independence is increasing too.  Last year he wanted me to dress him and make his food. Now he dresses himself, and is beginning to work the microwave to help me fix him simple meals too.  I expect he'll be making his own sandwiches and other foods by the end of the school year.

Plus, there haven't been any elopements in months.  My stress levels are dropping and I'm having opportunities to enjoy my son, rather than just manage him.

Life is good.  Change is good--as long as it's in the right direction.  My little boy is growing up.  Not only physically, but emotionally and cognitively.  I think I'm gonna just sit here on my first day of school and bask in that knowledge for a little while.  Yeah.  Life IS good.

Will He Ever Sleep Through the Night?

Today I am utterly exhausted.

I know, part of that is my fault. I stay up until midnight at the very least, often until one thirty in the morning, writing.  My personal time doesn't begin until after nine in the evening, and I use it to recharge in a variety of ways.

But I also stay up late because I know Jake will be up at least twice before midnight, and I don't like the idea of him roaming the house without anyone supervising him. 

We have a system right now.  I'll stay at my computer writing and he will get up at ten and midnight to get a drink, then I will put him back in his bed.  It doesn't matter if there's water in a cup (or twelve cups) right next to his bed within arm's reach.  He still gets up and searches for me.  I've tried ignoring him and letting him sleep on the couch, instructing him from my chair, tucking him in and singing a song, and getting angry.  None of it will keep him from getting out of bed. Sigh.

Recently, he's also taking a pit-stop in the bathroom, which is exciting for us who have been potty training him for like FOUR YEARS now.  He's becoming aware that he needs to pee in the middle of the night.  Baby steps.

Once I go to bed, I cross my fingers and hope he doesn't get up.  Locking him in his room is frowned upon. And I have a lock on our front door that is similar to the hotel locks at the top.  It's kept him inside thus far.

Usually, he'll come crawl into bed with me sometime between two and four in the morning, and I spend the rest of the night with his face pressed next to mine, and him breathing on my face.  Drives me crazy.  And I sleep horribly.  Most days I'm a walking zombie and I try to squeeze in an hour's sleep toward mid-day. 

But he's seven and a half now.  I'm getting tired of him sleeping in my bed (and so is my husband!). We've tried weighted blankets, different pajamas - and no pajamas.  Making his room cold, music, white noise, fans, and other things. 

Now, we've completed our third sleep study and are meeting with the neurologist to get him fitted for a c-pap machine for sleep apnea.  I have NO idea how I'm going to get him to sleep with the thing on, but I'm desperate!  I'm crossing my fingers and hoping it keeps him asleep.  Because I don't know how much longer I canzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz