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.

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

Being the Sibling of a Child with Down Syndrome

It's been a long time since I've written in this blog. A LONG time.

As any parent who has children will tell you, life gets beyond you sometimes. And if you're a parent with a child who has special needs, sometimes you fall so far behind you lose sight of anything except that little patch of light filtering down through the water as you struggle to keep from drowning.

Jake's been going through some serious behavioral issues as of late (more about that on another post), which means I've taken a much more active approach to his care. Including no longer working part time as an addictions counselor.  I am 100% mama (aside from the time I carve for myself to write) 100% of the time.

Within the walls of our home, I've spent an inordinate amount of time teaching Jake and Courtney to get along, which is not an easy task when he already weighs more than her and is twice (maybe three times) stronger. 

Just this evening she stomped inside from the backyard, her brows furrowed and hands balled into fists. "Jacob just sprayed me with the hose. He is so mean to me! He hates me!"

I immediately sat down with her and explained that he, just like her big brother, harasses her because he loves her and doesn't know how else to show it.  We discussed what was normal "brother" behavior, and what was behavior related to Down syndrome.  After several minutes, I had her recite to me the most important lesson she learned from our conversation.

She rolled her eyes, tilted her face toward the ceiling and sighed. "I'm allowed to be upset when Jacob is mean to me, but he doesn't do it because he hates me. He is being a brother and loves me." She sighs again. "And I'm not allowed to be mean back because I'm better than that."

She peeks through her eyelashes at me and twists her lips, trying not to smile. "Are we done yet?"

This time it was my turn to sigh and roll my eyes. "Yeah, but not before you give me a hug."

Courtney broke into a grin and wrapped her arms around me. "Thanks for being my mom. But I like it most when it's without Jacob."

Her comment tore at my heart and I realized that in all my efforts to take care of Jacob, I'd forgotten that Courtney is in the trenches with me, dealing with all of his "stuff."

I squeezed her a little harder. "Thanks for being my daughter. And thanks for being so patient with Jake."

She smiled, this time a little less sassy, then skipped down the stairs to have a little alone time without her little brother.

I watched her go, grateful that she is quick to forgive and also sad she has to forgive so often.  But I remind myself that she's learning life-long lessons often learned the hard way as an adult.  She's learning that sometimes you must forgive, even without the apology. Sometimes you must be kind anyway.  Sometimes you need to be the bigger person. 

Yes, I can teach her to be hard, and fight back. But I think the world has enough tough women.  I want someone who is kind and who lifts others up.  I want Courtney to be a woman who understands that a person's actions does nothing to reflect upon her, but on the instigator and who they are. 

I know, even though things are tough now, having a brother with Down syndrome will make Courtney a better person. She will have more compassion. More love. More patience. More kindness.  I already see it happening. And I can't wait to see her continue to grow.