Thursday, July 17, 2014

Because I'm Selfish...

I would rob you of heaven.

Without guilt or regrets.

If I could cheat you out of it...even for an hour...I would.

Because it's been too long since I've felt a clumsy "love you" pat on my bottom.

And too long since I've seen you surprised to see me sneak into your kitchen.

I don't miss you every day.

I feel you close to me all the time.

I know your heaven would never find you separate from any one of us.

But because I'm selfish...

I want to bring you out of paradise and plop you down in my filthy living room.

I know you've seen all my babies.  I have a feeling you've known some longer than I have.

But I want to hear you laugh when I tell you I'm typing this knowing that Jace is trapped in the kitchen pantry because Effie shut the door behind him when he was looking for Froot Loops and he doesn't know how to turn the knob.

I want to hear you say for the hundredth time how much Geb looks like Justin and I want to hear the names you'd morph all the squibs' given names into.

I want to tell you how Grandpa became Papa Lollie after you left and how LC's world would simply stop turning if that man wasn't in it.

I want to watch you watch Effie eat a bowl of horseradish dip.

I need you here to show me how to love and laugh at the things about Jace that most people are afraid of because that's what you were best at and it would make me brave when I'm afraid I just can't do this right.

I've missed sharing my birthday seventeenth with someone.

I have a feeling you nudged Geb into showing up on the last seventeenth of the year.

But because I'm selfish I want to see his name written in your serial killer handwriting on your refrigerator calendar.  Even though you'll remember it.  Because he will share your seventeen.

Because I'm selfish, I want to hear you tell me it's okay I didn't call you on the last July 17th you were here.

Because I'm selfish I want to snatch you back from Jesus and angels and all those family members you've been missing for years and have you all to myself.

But I can't.

And I wouldn't.

Because you were too good not to share.

And you taught me better than that.

So, today we'll plant some flowers.

We'll tell stories about GG Grace and summers on the farm and we'll buy maple nut goodies and cherry sours and find some peaches to eat with cream.

I'll make something sweet on that dented pan you left on your last visit.

I'll make sure it's something that covers the squibs in sugar and goo and after they've bathed and gone to bed I'll have a second piece while I wish you happy birthday and I won't leave any in the pan for breakfast tomorrow.

Because I'm selfish.


Thursday, June 19, 2014

Kindergarten Inclusion Party

Something's been grating on my nerves lately.

It's a phenomenon I've noticed thanks to the age of my daughter and the friends she's brought into my life via social media.

I've waited to talk about it, because I've needed to ponder it a bit.

And, frankly, I'm still not sure I'm at any sort of conclusion.  But in an attempt to process my volatile emotional reaction to the situation, I'll talk about it here.

I'm sick of reading posts by parents who are happily announcing their children's "full inclusion" status for their upcoming year of kindergarten.

I'm not sick of the parents.

I'm not offended by the posts.

I don't think one bit less of the people writing them.

But I am sick and tired of reading updates by people who are announcing the time their child will spend in a general education setting as if they're announcing their team's victorious final standing in a baseball tournament.

It yacks me out.

I know the messages these kinds of posts are meant to communicate.  I know the parents writing the updates are feeling things like, "Good things are coming" and "This group of people sees potential in my kid" and "My kid is going to run with the rest of the kindergarten pack". 

And those are all things worthy of celebrating.

But when was the last time you read a status update from a mom of a child in an ethnic minority group that read, "Just left our transition meeting.  Lori is going to spend 100% of her kindergarten year in a classroom with white kids!!"

You don't.

You won't.

Because that kind of discrimination is absurd and the thought of there being any question about that child starting out in a multi-colored classroom is ludicrous.

And I can tell you...from personal professional experience...that on the first morning of kindergarten, there are HUNDREDS of children who are going to be prancing into general education kindergarten rooms.  And those children are going to have ADHD to a degree that would make a hummingbird appear sedated.  And those children will eventually be identified.  And modifications will be made as the needs arise.  But those children will stay in their general education rooms for months before any other placement is suggested...if any is suggested at all.  And those children will be better for it.

So, I'm not tired of the celebratory parents.

I'm tired of the try out.

I'm tired of skinny five year old shoulders bearing the weight of proving they're capable of being included...or staying included...with same aged peers because they have almond eyes and stubby fingers that translate as tiny red flags.

And I'm tired of not sharing that I am making absolutely no attempt at full inclusion for my son...and have requested it not be attempted yet when it was suggested...because I don't want to torture him with the social demands of that environment.  I'm tired of a compassionate choice feeling like I cheated my kid out of a chance to proudly don a "My Mom Fought and Won" t-shirt with the rest of his extra-chromosomed buddies.

Blogs about kids with Down syndrome who are school aged aren't nearly as numerous as blogs about newbies with  the diagnosis.

I can't help but wonder if this doesn't play in.

We recently moved our family to a new home. 

We needed the space, no doubt.

But we could have found larger houses close to where we had been living...and found them at a lower price point.

We moved six miles away for one explicit reason. 

If we stayed in our school district, my non-speaking daughter would not be offered summer school because she hadn't shown regression during the school year.

Six miles west, she'd receive 160 minutes of summer school...three times a week...because of her unique learning needs.

The difference wasn't my passionate fight for her services.

The difference wasn't my preparedness at IEP meetings or my ability to provide hard data or my eloquence in articulating how much she needed individualized intervention.

The difference was six miles.

The difference was a school district with a special education philosophy different from the one we left.
For three years I read about the educational experiences other families were having down the road from my house.  And for three years...and through multiple IEP meetings...I felt like a putz because I couldn't replicate the same experience for my own children in their current district.

I'd be lying if I said it didn't sting a bit to admit when it came to making good things happen for my kids educationally, a realtor's license went a lot further than a master's degree in special education.

Don't get me wrong.  I realize a lot of these emotions just come along with the territory when you have a kid entering school. Comparisons are going to happen...and, more often than not, I'm sure my kids are going to come up lacking...Effie and Geb included.

I'm not annoyed at the players. 

I'm annoyed at the game.

I'm annoyed at hearing parents overapplaud districts that are making assignments for students with special needs that are nothing more than the result of common sense and educational competence.

I'm annoyed at hearing parents report that their own districts are allowed to continue employing discriminatory practices...but even more annoyed when those reports are shared as declarations of parental failure because they couldn't change a policy that was never really up for debate in the first place.

This August I'll be packing a backpack with items demanded by a kindergarten supplies list.

Maybe you will, too.

And...whether your kid removes those crayons and places them in a cubby in a general education room...or snips with scissors in a resource room...whether those glue sticks are removed by a full-time para or taken out by a general education teacher...

I want you to hear you're doing a damn fine job.

You've done right by your kid.

You're navigating through a system not designed for your learner and you're doing it uphill and against the current.

Your best is enough...regardless of circumstances...good things are waiting ahead.


And you deserve a party.

Sunday, June 1, 2014

Dance Recital Day!!

Today was the annual dance recital for the group LC's been taking dance classes with this year.

At Access Dance, dancers from a local studio volunteer time each Sunday to partner up with children with special needs and rehearse a number to perform at the recital and a few other events.

It's a pretty great program and we have been lucky to be able to participate in it.

This weekend Nana and my sister and her family were here, so we had a whole crowd ready to cheer for Pudge in her dancing debut.


She looks giddy with anticipation, doesn't she?

Ready to jump...

...and spin...

...and whatever this is...

...and perform the routine she has practiced with her dad almost nightly for the past few weeks.

I'd love to tell you that's what happened at the recital, too.

But if you want to read that version, you'll have to go here.

Because we had some dancing buddies who knocked their performance outta the park.

It really isn't fair to blame today's dancing disaster solely on Pudge.

Things are a little discombobulated at our house right now.

School's out.

We're moving to a new house this week.

And, there's a chance that I had to rummage through multiple packed moving boxes at 11:00 last night before I located the costume LC was supposed to perform in today.  (Thank you, Auntie Whit!)

She's not the only one feeling a bit scattered.

I waited with her backstage before the show.

I gave her the best pre-dance pep talk I could come up with and then shoved her at her dancing volunteer assistant and ran into the auditorium to find my seat.

When I found our row full of family, I plopped down beside Justin and told him Pudge was having some pre-performance jitters.

He answered with, "Where's Geb?"

Sweet, merciful God.  I had left the boy completely unattended in his carseat in the lobby...surrounding by tiny adoring ballerinas.

Luckily he and I both made it back to our seats in time for the show.

Which I will not be posting video of here.

Here's another picture instead.

Look at it for 57 seconds.

And you'll witness as much dancing as I did at today's performance.

Because LC had to be carried onto the stage after refusing to join her group.

And...once there...she assaulted her dance assistant while the others performed around her.

She did set into motion once.

In an attempt to run off the front of the stage and hurl herself into the audience.

Please enjoy the shots of Pudge in her dancing finery.

It's the last time you'll have a chance to see it.

We hereby announce LC's status as a dance class dropout.

We'll be exploring other hobbies.

Most probably something nice and performance-free.

Like gardening.

Or marathon napping.

It will be less bedazzled.  And lacking in brilliant choreography.

But it's probably best to salvage dignity where we can.

Happy First...and Last...Dance Recital Day, Pudge.

Thanks for making it memorable.


Friday, May 23, 2014

Onward and Upward

Yesterday, the squib elders celebrated the last day of school.

And, oh...what a year they had.

Biggs went from this...

...to this.

And Pudge went from this...

...to this.  A preschool graduate!!!

LC's current school district doesn't have a ceremony for preschoolers entering kindergarten from special education classrooms.  But since she learned SO MUCH to get ready for kindergarten this year, we couldn't let the day pass without celebrating her hard work.

And, of course, we celebrated in a manner most appropriate for the squib of honor.

Yes.  This is a menu that would bring Michelle Obama to tears.  Sorry, folks.  We love with food here.

And, frankly, if you don't, then you aren't using chicken fried steak or homemade biscuits as God intended them.

Geb was too drowsy to fully join in the celebration, but Biggs and Effie were happy to participate.


(Pretty sure she's mentally planning the menu for her own pre-K graduation party...)


Congratulations, Pudge!!  We couldn't be prouder.
Can't wait to see your brain fill to overflowing in the years ahead.

Monday, May 19, 2014

LWA: Little Boy Lost

I'll tag posts about life with autism "LWA" from now on.  That way, those who are interested can easily locate them, and those not interested can easily avoid them.  It's easier than labeling them.  Because I'm rotten about remembering to label my posts.  And my brain is hardly organized enough to think in categories.

Also...most of you are used to doing this already, I think...but keep in mind that these are my opinions and perceptions and impressions.  Yours are probably very different. I'm writing as much to process things for myself as I am to share our experiences with others, and at times I'm quite sure I'll be less than diplomatic or politically correct as I do so.

I'll start by honestly sharing that I have very different attitudes about Down syndrome and autism.

During a theological discussion with a friend, I was asked if I longed for my children to be healed from Down syndrome in heaven.  I was a little stunned at the suggestion and assured her that I believed if I stood in front of Jesus with my children and asked for healing, I'm pretty sure I would be the only one he saw in need of it.

I think my children were designed as they were intended.  I think there was grace in the design...divine intention in it, even.  When it comes to the number of my children's chromosomes and the way those chromosomes impact things for my children, I wouldn't change a thing.

And...in the same breath...from the same brain...in the same moment...if someone were to offer me a pill that cured autism I would stuff it down Biggie's throat before he ever saw me coming with it.

Hypocrisy?

Quite probably.

But I have never seen Down syndrome hurt my children or my family.  I have seen society's response to Down syndrome disappoint us all, but the syndrome itself hasn't.

Autism has been unkind.

The hardest thing about autism...the piece that is the most cruel...is that autism robbed me of a little boy I used to know.

Autism didn't steal away the boy I expected Jace to become.

Autism took away the Jace I had.  Autism took away the Jace I knew....the Jace I protected...the Jace I understood...the Jace I loved.

And, as if that wasn't enough, autism took him away in front of my face.  Every day.  Without me ever realizing he was going.

Below is a video I made when Jace was about 18 months old.  If you listen very closely, you can hear LC's speech therapist working with her in the basement.  When we had in-home services for early intervention, we were asked to choose one area (gross motor, fine motor, or speech/communication) on which to focus each child's therapies.  LC's was obvious.  She didn't speak.

For Jace?  We chose gross motor...because he wouldn't crawl on his hands and knees.  Due to the rate he was picking up signs...and the wide spectrum of sounds and babbles he was making to attempt speech...we said LC was lucky we adopted a tiny translator to help us figure out what she wanted to say.

So, in this video, LC is in the basement trying to learn to communicate verbally.  And I am up at the table, entertaining my younger one with a popcorn snack.

To watch as someone from outside our family, it's hardly anything extraordinary.



 But to watch it as his mom, there are a hundred things to marvel over.  And a hundred things to miss.

Don't get me wrong.  I can get just as swept up as anyone in the CUTE of that kid.

And I'd be lying if I said more than a little hurt happens when I compare that Biggs to the one I live with now.

But the difficulty in watching any old video of Jace lies in my inability to reach through that screen...and back in to time...and grab myself by the ears and scream, "FOR THE LOVE OF GOD, PAY ATTENTION."

COURTNEY...he is LOOKING at you.  That's going to go away.

COURTNEY...he is SPEAKING.  That's going to go away.

COURTNEY...he is SIGNING.  That's going to go away.

COURTNEY...he is EATING.  That's going to go away.

COURTNEY...you can FIND HIM.  You can effortlessly reach him and connect with him and that is going to go away.

And I don't know who I hurt for more, really.  The boy who is about to slip out of reach or the mom who doesn't see him going.

It's easy to stop with the hurt of it all.  And most days, especially lately, I do.

But in the back of my head...and at the base of my heart...I know I am not a hypocrite.

And if Down syndrome was part of this kid's design, then autism was, too.

The God I love poured blessings into my life through a couple extra chromosomes and I'm pretty sure He's waiting for me to realize He can do it through autism, too.

So, I'll let myself look at the "Baby Biggs" videos I've been avoiding.  And I'll let myself ache for the boy I miss.  I'll let myself shout at the mom I was.  And maybe that's where the grace is.

Maybe the grace is in the reminder autism gives me that, at any point, the everyday moments I'm muddling through can become the moments I'd give anything to bring back.

It sounds a little too cliché to be comforting at first.  Especially when your son has broken every piece of your dining room furniture...or daily made a habit of painting himself in his own feces...or decided to drown out the overwhelming sensory input of his world by screaming as loud as he can...for as long as he can.

Not a lot of that I think I'd find myself missing, given the chance.

But I also have a little boy who needs me to scratch his head at night before he falls asleep.

I have a little boy who never lets me dance in the kitchen alone.

I have a little boy whose ears still bend and whose giggles still bubble and whose eyes are still as blue as they ever were.

I have a little boy teaching me to find the grace in now...to mourn and move on or I'll miss the good in front of me..and a stubby little hand in mine that whispers it may be okay to be a little lost...as long as you have something to hold on to.

Wednesday, May 14, 2014

She Was and Now She's Not.

Hospitalized, that is.

A week ago today, LC didn't want to get on the bus.

Super odd, but Dad was away on business and I just chalked it up to me handling the "get ready for the bus" routine in a manner that his royal dadness would not have approved of.

On Tuesday afternoon, we all basked in the glory of 86 degrees and the latest water feature at Squibland.

And then she woke up in the middle of the night retching.

Vomiting blood led us to the pediatrician for anti-nausea meds.

And after a day of heaving with no Zofran-delivered relief, 3:00 a.m. found us in the children's hospital emergency room.

A CT scan showed a healthy appendix...no intestinal ileus...and no reason why she couldn't stop vomiting.

After a day of IV hydration and heaving, chest X-rays and blood work showed rhinovirus, bacterial pneumonia, and fluid collecting around her heart.

So, we stayed at the hospital for a few days.

Note:  a nurse brought this Charlie Brown doll in to LC.  LC hadn't made a peep since her admission nearly a day and a half before.  The nurse asked, "Do you know who that is?" and without missing a beat, LC answered, "Yeah.  Beb. (Baby Geb)".  And the resemblance is remarkable.  I think she was spot on.

There were a few setbacks to getting healthy that are par for the course when you have a little girl in a dark room who can't tell you, "Hey.  My hand is about to explode."

But hospital visitors lifted her spirits...

...and eventually her appetite returned.

And she and I conspired to deliver a very happy Mother's Day surprise.

Thanks to everyone who reached out to us via e-mail, blogs, instagram and Facebook.

I have no doubt the hundreds of people volunteering to pray for Pudge are the reason she rallied and snuggled down to sleep at home on Sunday night.

I've said it before.  I'll likely say it again.

Best.  Fan club.  EVER.

We love you so.

Welcome home, Pudge.  Now, stay put.

Wednesday, April 30, 2014

Coming to a Carnival Near You...

Effie spent most of the morning trying her luck at a game she's invented.

Baby Brother Ring Toss



Not the most difficult game in the world, thanks to the melon on the target.

Just be grateful she wasn't inspired to play a round of Whac-A-Mole, Gebber.