Friday, September 28, 2012


I've done an embarrassing amount of nothing today.  There is just no pretty way to say that.  I did have a rather unexpected appointment in town this morning, but nothing major.  Since today is, until about 2:00, pretty uneventful, I braided the top of Maelynn's hair, and stuck a huge red bow in the side, right where the braid ends.  The rest of her hair cascades down her back and pools in little curls right below her shoulders.  Strikingly beautiful, even in a band shirt and keds.

It's the same with all three kids.  She's just the one that is more fun to dress!  Richie has this golden curly hair, and fresh out of the bath, he has these beautiful, cherry red lips and big, deep blue eyes.  Ryan has the same eye color, but his are bigger.  And he has this nice, thick, brown hair that I just can't keep my hands out of.

They're all beautiful.  At every stage, I think they're the most beautiful people I've ever seen, and I don't want to forget a thing about them.  

In the car yesterday, Maelynn kept singing and jabbering to herself about this and that.  She was alone in the backseat with Richie and Ryan both in school for the day.  I caught myself glancing back at her in the kid-rearview mirror that hangs below the regular one.  She was talking about everything she saw, helping her bear dance, and in between things asking me for her "coffee cup".  She'd take a few pulls of milk, then hand it back to me and return to being Maelynn.

This gorgeous, precious, fragile creature in the back seat of my van is the same one I met in the operating room at the hospital.  I'd never seen a prettier girl then, and I still haven't.  Not that your daughters aren't pretty too... but mine is special to me, and yours should be to you, too.

I just couldn't help but stare.  She's such a wonder, as are her brothers.  Such gifts they are to our lives.

Then the playlist turned to a song I haven't listened to in a while.  I know I've shared it in the past.  It's really just that close to my heart.

Send some rain, would You send some rain?
'Cause the earth is dry and needs to drink again
And the sun is high and we are sinking in the shade
Would You send a cloud, thunder long and loud?
Let the sky grow black and send some mercy down
Surely You can see that we are thirsty and afraid
But maybe not, not today
Maybe You'll provide in other ways
And if that's the case...

And I glance back to the backseat again.  I don't want to forget her face.  I don't want to forget the time I spent after she was born.  I don't want to forget the days that were hard and long and the fear that I"d never feel like myself again.  I don't want to forget that there was a day when I didn't know if I could do this.  

We'll give thanks to You
With gratitude
For lessons learned in how to thirst for You
How to bless the very sun that warms our face
If You never send us rain

I don't want to forget that there was a day when we couldn't have driven fifty minutes to church.  I don't want to forget that there was a time when I really thought I might not be okay because I couldn't seem to muster enough of this mysterious faith currency to keep bad things from happening.  It wasn't that long ago.

Daily bread, give us daily bread
Bless our bodies, keep our children fed
Fill our cups, then fill them up again tonight
Wrap us up and warm us through
Tucked away beneath our sturdy roofs
Let us slumber safe from danger's view this time
Or maybe not, not today
Maybe You'll provide in other ways
And if that's the case...

I don't want to forget how she came into this world.  I don't want to forget the way God taught me that He was enough.  That I couldn't match his strength.  I don't want to forget that and waste those awful postpartum days of spinal headache and depression and anxiety by forgetting that there is nothing good enough I can do.  He gives us faith. 

We'll give thanks to You
With gratitude 
A lesson learned to hunger after You
That a starry sky offers a better view if no roof is overhead 
And if we never taste that bread...

There is no magic formula to keep the bad things away.  At the same time, I don't want to forget the pain that we have seen.  The uncertainty of circumstances.  I want that sweet face and the ones who usually fill the seats to know and love these times.  I want them to know how we came through.  I want them to know that things won't always look like they should, but things always happen in God's providence and timing. 

Oh, the differences that often are between
What we want and what we really need

I want them to know how much we love them. I want them to see it on our faces and in our lives and actions.  I want them to hear it with their eyes and soak it in from our arms.  I want them to know our love and for our love to reflect His love.  I want them to know that we wanted things... we asked the Father for things... we didn't get.  

So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today
Peace might be another world away
And if that's the case...

I want them to understand why we stand and sing, why we read the liturgy, why we read our bibles.  I want them to know that although we didn't get everything we asked for, we are glad we asked.  I want them to know that although we didn't get everything we asked for, we have more than we could ever have imagined.  I want them to know why we long to share this with the world.

We'll give thanks to You
With gratitude
For lessons learned in how to trust in You
That we are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace...

Amid all the confusion and all the things we were not meant to understand, all the doctrinal and theological discussion, I want them to know that the relationship they develop between prayer, the word, and fellowship with other believers is the way to have everything they want... and more than that, the way to want everything they have. 

But Jesus, would you please?

Thanks be to God. 

*With apologies to Nichole Nordeman, who owns "Gratitude".  Click below to hear.

Wednesday, September 26, 2012


This morning, as the classroom aid helped Ryan get out of the van, he asked for Mrs. B, his teacher.  Then he said "no Ms. R" who is his resource teacher.  I quickly followed that up with a quip about how he should love Ms. R because she's helping him read.  Then Ms. K, the aid, said "Oh... he can read!"

We smiled in agreement, both that he can read and that the hard part is getting him to show that he can read.

I drove away happy that his resource teacher, classroom teacher, and the classroom aid all believe in him.  They know he's intelligent.  They know he's smart.  At the same time, though, they know that their job is to take him where he is and help him get better.  But oh, how he hates reading comprehension work!  This last week, I fielded a call from his resource teacher, who said that when she told him it was time to read, he said, "Ms. R confused.  Ryan iPad."

Uh, no dude... Ryan work!

Every day after school I experience this phenomenon.  He goes to the bathroom, then comes back to do his work.  There are days when I have to herd him to the table, reminding him that if he'd like iPad or Vsmile time or anything else, he must do his work first.  Addition, subtraction, no big deal.  He even participates in something that was optional from his classroom teacher, reading as many words as possible in a minute.  But reading to me, then answering questions about what he's just read?

P-u-l-l-i-n-g t-e-e-t-h.

Even with books about trains!  He just hates having to try to answer those questions.  It's hard to put into words his answer, as far as I can tell.  And when I do get an answer, it's often coaxed out of him.  Begged.  Coerced.  Bribed.

I hate having to make him do this stuff.  I really do.  But I've made him do other things that he didn't like because they were good for him, too.  As his mother, I see the long-run benefit of doing these things.  Letting him skip these things just because it wasn't as fun as iPad, Vsmile, drumsticks, mallets, Elmo, or Thomas would eventually lead to nowhere.  If I want Ryan to reach his God-given potential, I must help him along.  I must both insist and assist in so many things in his life, doing as his teachers and meeting him where he is, nudging him forward as much as he can stand.

Same with Richie and Maelynn, although they don't put up near the fight... yet, anyway.  Richie practices writing his name, Mae practices going without her binky.  One thing after the other, always fitting, but always pushing boundaries just enough to help them grow.

In the same way, and even as I'm working to be patient with the kids as they struggle against the learning processes of life, my Father works in me.  He allows things in my life that make me grow.  That aren't comfortable.  That are pretty miserable, even.

I fight.  I kick.  I whine.  I insist that if He'd just let me do what I want already, things would be so much better.

But He knows better.

He knows that the end result is worth it.

So He stays with me, just as I stay beside Ryan at the kitchen table, making sure I finish my work.  He pats my back, encourages, and reminds me in his word and with peace in my heart that it will all work together for my good.

Sometimes He will see fit to rescue me.  Let me take a pass from this one.  But that must always be His call, and not mine.

I can tell Ryan he doesn't have to do his work. I can argue, if I choose, to the teacher that it's too hard, and he doesn't need to have to do that.  But I know that the end result would not be good.  So he does his work.  He practices his spelling, reads, we talk about what he's read, re-reading where appropriate.

It may not be fun, but we get the job done.

And when the job is done, and as I place the iPad in his hands, I know that he's better.  I know his smile is brighter, he's happier to see his beloved electric friend than he would have been if he hadn't worked for it.

Not because he insisted.  Not because he asked over and over and over.  But because the one who could see what was best for him, after a time, decided he could have a break.

I seek not to over simplify the fact that hard things happen.  Not to poke holes in anyone's faith.  Rather, I seek a different, deeper kind of faith.  One that says that if this is happening, it must be for my benefit.  If this hasn't gone away, there is something I don't understand.  There is someone in charge.  Somewhere along the way, this will be worked for good.

Whatever I'm going through, it hasn't shocked God.  I'm not saying that we should celebrate these things or cease to attempt to improve the things and situations around us, or even that we shouldn't be hurt when it looks like, from the world's standards, prayers go unanswered.  People die.  Things go horribly wrong.  Rather, it is for that reason that we must have a place to rest.  We must have somewhere to go with all the hurt, frustration, and exhaustion of life in a fallen world.

Something must help us sleep at night.

I sleep at night knowing that the same God who hung the stars in the sky holds me in everything that goes on in my life and the lives of those around me.  Things have gone wrong.  I know there is always someone who knows suffering in a more extreme way than I do, but I can say that I know suffering.  I know what it's like to want to know why.  To want it all to go away.  To deeply long for it to be better.  For some relief.  For something, anything, to rescue me from what I'm going through.  To not understand at all.  And I can tell you the singular place I've found peace is in knowing God is sovereign.  Unshockable.  Unshakable.  Graceful.  Merciful.  Powerful.  And he's not taking a break anytime soon.

Thanks be to God for his sovereignty and providence... and just like I tell Ryan about Ms. R, for bettering me by making me work, even when I'm kicking and screaming.

Tuesday, September 25, 2012


Tuesday and Thursday, there is an odd chunk of time between picking Richie up from school and getting Ryan from school.  I get Richie at 2:30; Ryan's not out till about 3:30.  Even in a small town, going home for an hour doesn't lend much time to do anything, especially when you're loading a toddler and a preschooler into car seats and out of the same.  So I decided that we'd spend our odd hour at the library in town.

It's a cute small town library.  They have a nice children's section with some toys, a little table, and of course lots of books.  The kids look forward to this time all week.  Each time they are allowed to choose one book apiece, then I pick one of my choice for them to read.  It's so much fun to sit and read and explore all the new books with them!

This time, I was a silly mommy and forgot to silence my phone.  So the honky-honker went off, and I couldn't help but check it.  One was a text from my husband about plans for the afternoon, the other was a picture of a cozy little setting that I'll see later this evening.

No, it's not for the kids.  There are no trains, red monsters with squeaky voices, or mice with tutus and hairbows.

There are no homework assignments.

No work to be done, not a single question to ponder or chapter to read before attending.

No one to keep from running into traffic or knocking over the television.

Just me and ladies who can drink from open top cups and take themselves to the bathroom.  That's right... I don't even have to help them wash their hands.

Have you any idea the novelty of this occasion?  If you have kids, you certainly do.  I don't get to do this often.  Okay, ever.  The idea of running off for a girls' evening seems frivolous, to be honest.  But you know what?  It's like the red shoes in my closet.

Nanny and I were out shopping when I was a single first-year teacher.  I spied these red slides with a wooden, planky heel and blue beadwork and stitching across the top.  Nanny asked if I liked them, and if I wanted them.  Well yes, I wanted them, but why?  When would I wear them?  They weren't at all practical in color or in style, and they certainly weren't great for teaching marching band.

"That's why you need them,"  she said, "because every woman should have a pair of completely impractical shoes just because she loves them."

Okay, maybe not the wisest thing since Gandhi.  But they're still in my closet.  Through at least five moves, a wedding, three kids, and several shoe purges they're still sitting there.  I don't remember the last time I wore them.  I did pull them out not too long ago when J and I were looking for something, and I told her the story.

To tell the truth I'm not even sure they'd fit anymore.  Multiple pregnancies have a way of rearranging things.  But I'm glad I have them. They remind me of me.

I'm happy to be Eric's wife, happy to be the Mama, the daughter.  I'm humbled at the chance to be an autism Mama.  I love serving my family and making their home a warm and fun place to be.  But you know what?  I'm tired.  Normally I don't even notice, or really think about it.  If I feel tired there is always something else to do to keep me awake.  The notion of a nap is hilarious.

But I have the chance to take a break, finish a thought, and maybe even talk about something other than autism.  Therapy.  ABA.  Speech.  Insurance.  Potty habits.  Binkies.

Not that I don't love all those things in their own way.  And honestly, I've long tried to convince myself that I don't need a break.  Can't have one, can't afford one.  Who needs breaks?  I get a break every night.  It's called bedtime.

While those things are true, every once in a while God drops a little something in your lap and says, simply, "enjoy."

So I'm going to take off here in a bit, and I'll be back in time to curl up beside my hubster tonight.  I'm thankful for my husband, who is more than willing to care for the kids, and for the means to get where I'm going, even with a likely stop off for caffeine on the way home.  I'm not sure what to wear or if I remember how to talk about anything but the aforementioned, but I'm going to give it my best shot!

Big thanks to my sweetie, who is spending one of his few free during marching season evenings caring for the kids so I can take off.

And thanks be to God for it all!

Monday, September 24, 2012

The Big Question (just don't look for an answer)

"Kids, dogs and husbands: they'll make a liar out of you every time."  ~Mae Jackson VanVranken, my Granny

One only need to get married, have a dog, have kids, and promise that they always do this when thus happens to find that my Granny was right.  She spoke this cheekily, of course, because she loved her husband, kids, and animals a ton.  And honestly, I can't think of anyone who didn't love her to pieces.  Yesterday at church, Granny's little saying rang true with Richie for sure.  He who always trots down the hall, thrilled to be back at church, cried when I dropped him off for CE.  

He never does that!  He loves getting to go to church, and most of the time, he cries when we tell him it's time to go! 

The week before, it was Ryan.  When I was called in because he was refusing to do anything but lay on the floor, after coaxing, bribing, cajoling, and insisting, he was finally in his chair but fussing.  Okay, so he was hitting his head with his fist and making a terrible sound somewhere between a grunt and a tribal yell.  

What in the world do you do with that? 

I've promised to exercise our zoo pass and take the whole family every Sunday so that they can use that as a reinforcer to keep him in his seat.  He has an aid for the class who is as experienced with autism as we could hope for, and she's quite honestly golden.  She's a gift straight from heaven for our family.  But the hard truth is that not everyone can deal with the behaviors my dear boy dishes on a daily basis.  And the other hard truth is that I don't have the answers.  There are no easy, sure-fire instant keys to compliant behavior from Ryan.  He's doing better, but we have a long way to go.

The hard truth is that, no matter how I frame it or how many cute puzzle pieces I glue on it, or how many smart, inspiration autism memes I reblog, it's still what it is. 

I can type until my fingers fall off and I still wouldn't have Ryan pegged.  We see the difference all the time.  Richie and Maelynn are a completely different set of ability and personality, and most of the same things that work when calming and drawing other typically abled kids to participate works.  They're like other kids... they want you to be proud of them.  They want to do the best, they want to show they can do the best.  They call me to "watch this, mommy!"  They call me to see how high they can build a tower, how fast they can run, how nicely they jump from the ottoman to the couch.  When I or a therapist asks Ryan a question, they bubble over with the answer.  

Ryan sits back and lets them.  

This is just a tiny part of what we deal with, and it doesn't sound like a big deal.  

The truth is that it's not that big of a deal until you start to think of how we teach children to do things.  We put stars on a chart to show who has the most.  Why would we do this?  To compare.  They're supposed to want to be the best.  And for most kids, the gold-star approach to education works.  Whether or not you use actual gold stars, it's happening in classrooms all over every day. 

We play games, racing to the finish.  Whether it's Candy Land or Monopoly, sports or music, there's always a game.  A competition.  A comparison.  And intrinsic motivation is simply a means to the end, which is, of course, being the best.  The biggest.  The brightest.  The most amazing, the most in tune, the most precise, the least flawed.  It's all about comparing.  To be competitive, there's a little bit of "look at me, I'm better than ____" in there somewhere.  

My autistic kid is not concerned with what the rest of the world is doing.  This is beautiful!  I love it!  It's actually one of my favorite things about him.  Every time he wears a button-down shirt, it must be buttoned to the very top.  Hot outside?  Who cares!  Others don't wear that?  Psscht!  He doesn't even notice.  He is who he is.  

That's wonderful... until it's not.  

None of us realize how much we care what others are doing on a daily basis.  I would not have even entertained this thought before Ryan.  If everyone in a crowd is talking loudly, you talk loudly.  If everyone in the crowd suddenly stops and begins whispering, nine out of ten of us would likely start to whisper.  Ryan wouldn't care.  If he wanted to yell, he'd yell.  I didn't even realize how much my brain does in every social situation... how much I'd been programmed to speak when spoken to, look others in the eye, or even just acknowledge someone who waved or said hello.  

Consider now, if you've been involved in such a thing, any kid Sunday school, VBS, or in our case, CE that you were involved in or taught.  

Put someone in the mix who doesn't care what others think or what they're doing... who needs a clear if/then to convince him to do something he doesn't want to do... who needs a clear routine to follow every time... and think about how that would go.  And keep in mind always that my descriptions are static and are always an attempt at explaining a world that, although I live in its midst, do not come close to understanding.   

It takes work.  It takes time.  It's heart wrenching to see your child in a position to not even remotely enjoy something the rest of the family holds so dear.  I look around catch myself envying the ability to drop off a child and go to your own class.  To have the only thing standing between my family and church being my willingness to get up, get dressed, and drive.  

It's hard to not get angry. 

It's hard to not give in to the anger.  

It's tempting to fold my arms and, in my heart, shake my finger at those who judge Ryan or who take this for granted.  

But a cooler head leads to a wiser heart. 

Most of the time, a lack of understanding results from a lack of education.  And honestly, all I can do is share what I know and be willing to listen and learn.  I worry about the other kids in the class.  I worry about their experience.  I worry about what my son is taking away from that experience.  I'll give you three guesses at how much I can do about that, but you'll only need one. 

Not a thing.  I can do nothing about how others perceive Ryan's behaviors.  I can answer questions as they are brought to me, but I have no control over that part of any experience.  The harder part is that I can't always answer the questions.  So often I meet the questions with a stuttered response that ends with something like "It is what it is" or "it takes time to set a routine."  The truth is so often closer to "I have not a blasted CLUE what to do, and this whole situation just HURTS."  

If I can't understand that others are going to react how they will, and all I can do is my best, how then can I expect others to go out of their way to learn about my Ryan and the thousands of other children like him?

If I'm not willing to rein my feelings and open my heart to others' perceptions, feelings, and questions, how can I hope to successfully demystify autism anywhere, anytime?  

If I get my feelings hurt and completely withdraw from society, keeping my child in a bubble of comfort and low expectations, changing environments every time there's a perceived threat to his ability to be who he is, how have I helped him grow?  How have I grown?

So we must always continue to dance the tricky steps of balance between protection and chance, between pushing to reach potential and comfort and freedom to be who he is. We must remember to be understanding and loving to all- not just Ryan- and not just those who can deal with all the parts of who he is.  

If we want less judgement, we must be less judgmental.  

If we believe that God created us all fearfully and wonderfully, then we are all called to a certain level of understanding and tolerance. And this does not just apply to those of us with a diagnosis.  

I urge you to be part of a body of believers.  It may look different for your family than it does for others, and that's okay. Everyone has a different set of circumstances. 

I know it's hard.  But I promise that you can come here and see that you're not alone.  I promise that somewhere, someone else is feeling the same way.  If we don't step out and attempt the give and take dance of community with others, we've given in.  Laid down.  Given up.  Let not even autism, but perceptions get the best of us.  

I promise you that, Lord willing, I will keep standing.  I'll keep coming here so that even one of you can see that you're not alone.  I sat, before this God-given resolve to take a stand for our family's participation in a body of believers, with nothing but Google before me, typing in things like "autism Christian parenting" and "autism church participation" and every other combination of words you can imagine, and I came up with nothing.  

So here I am.  And here I'll be.  Because we need each other, you and I.  We need to know that we're not crazy and we're certainly not alone.  

Thanks be to God for you!

Friday, September 21, 2012


Sometimes the thing you know you're supposed to do doesn't make sense.

Ten years ago last week, after work, I caught up with T, one of the other band directors on staff and one of my best buddies, and had a conversation that looked something like this:

Me: I gotta talk to you.

T: Yes...?

Me: Well, um... uh... one of the other directors...

T, who had two kids (at the time) and needed to get moving, which I completely understand now: ...likes you.  I know.  It's obvious!  So what are you gonna do?

Me, still quite annoyed by the whole male community: I don't know.

I'm sure I said more than that.  But the gist of it was that I'd tried this relationship thing.  It never ended well.  That's an understatement.  Around the two-month mark, it always ended quite badly.  I was NOT... repeat NOT... up for another go-around.  I was not up for being ripped apart again, thank you very much.  I loved my job, and for the time being, wanted to try to concentrate on being married to it.

The first time I agreed to something you could call a date... as in, I didn't run around and try to get all the other directors to come too because I was scared... was a few days later.  It was a Thursday, and we had the instrument drive, so we couldn't do dinner.  But Monsters, Inc. was coming out on video, and I agreed to watching it in my apartment.

My mind was screaming WE TALKED ABOUT THIS. NO MORE MEN. RUN. 

But something compelled me to stay put.  Partly because the poor guy was really nice, and partly because my friend J, at a wedding the previous weekend, asked me a very pointed question. 

How many more guys are you going to refuse to give a chance because of that last guy?  

He said a lot of other stuff too, but that stuck.  It rang through my head and my heart.  J was a godly man himself, and had been through the last major mess with me.  I mean, he was my big brother and really took care of me.  Lots of calling, lots of driving, took care of me.  And God used him again to tell me to give this new guy a shot.  

So I took this next shaky step of a first date.  

And then another that Saturday.  

And then, the next Wednesday, he asked me over to watch TV, and asked me to marry him.  That Friday we had a bye week, so no game... and we picked out a ring. 

The next Thursday he officially gave me the ring on a dance floor overlooking the city after an incredible, elaborate, intricately timed and planned date. 

After agonizing, searching, trying to make it happen, in a head-spinning two weeks, I found the one my soul loves.  

It didn't make sense.  We didn't date for a year, or even six months... or even a month.  We were engaged for about nine months, and around the two month mark, guess what?  I freaked out.  

It was too good.  Too fairy tale.  Something was surely going to go wrong.  He was surely tired of me by now.  Everyone else had been.  But this was different. He took my hand.  He dried my tears.  

You see this ring?  This means I promise I want to spend the rest of my life with you.  I promise.  

Ten years later, not only are we still married... we're even happier than we were then.  But I had to... we had to... step out and try.  Over the years I've asked over and over how in the world he knew... how he was brave enough to ask me to spend the rest of my life with him after such a short time, and the answer is simple.  He just knew.  

In the last ten years, God has proven time and time again that He holds us.  He has grown us closer than we ever understood possible, and has shown us repeatedly that what seems to be normal or widely accepted isn't always best.  

Looking back to even before we met teaching, we are amazed at the amount of times we saw each other, or were in the same room, even spent the whole day three chairs away from each other in a room of five people and never really met until it was time.  Yes, we were introduced, but we forgot each other as quickly as we spoke our names.  

So today, even though we're not going to see each other for more than an hour, we're more together than ever.  And I guarantee you that we're both thanking God for his sovereignty and providence.  

Thanks be to God for my sweet Eric.  

Wednesday, September 19, 2012

Near Loss

We almost had a loss in the family last night.

Well, mostly. For the first time, after hunting and digging, clawing and moving, flashlights and searching, Maelynn had to go to bed without Bearbearbear.  Her beloved used-to-be-pink bear had seemingly vanished.

We emptied the toy chests, looked under every bed, in every crack and crevice in this house.  We searched the van, the area around the van, and even through every kitchen and bathroom cabinet.

In disbelief, we finally put her in bed.  We snuggled her in with her Sister Bear, who looks how Bearbearbear did when she was new, and Snakie, her green plastic snake.  I know.  My girl loves that plastic snake.  Who knew?  She prayed for her dear lost friend.  She even kept saying, "Bearbearbear is sad for me.  Bearbearbear is lost."  She cried heartbroken tears.  We hugged and loved, but she just didn't seem to feel better.

Once she was tucked in, Eric and I kept searching.  We just couldn't believe that we couldn't find her.  I even texted Ms. K, the speech therapist who comes to the house, to see if maybe Maelynn stuck her beloved in Ms. K's bag.  Nope.

After tearing up the house and the van again, we finally went to bed.  I'm not sure if I should be embarrassed or not, but folks, I cried!  This bear has been in Maelynn's bed since she was tiny.  Eric even said that he almost feels like we've lost a member of the family!   We were heartbroken for our girl and her missing friend.

This morning, at about 6:45, Maelynn came tumbling out of bed, running into the kitchen.  She had a little different fervor than usual.  Didn't take long to find out why!

"Bearbearbear is in the dining room!" 

She bubbled over with excitement!  I picked her up, half hoping and half sick that she might not find her there.  After all, she'd insisted that the bear was in the van, and after two daddy looks and a mommy look, no bear.

As I turned on the light, she said, "Bearbearbear is in the box!"

Sure enough, she had put her bear in the top of a box in the dining room.

I scooped her up and I'm here to tell you, this Presbyterian girl shouted "GLORY TO GOD!!!"

Thank goodness it was time for Richie to wake up anyway.

After all this excitement, I've reminded her to keep up with bear.  Hang on to her.  The heartbreak of losing something you love is rough.

But as we all know, time will pass.  We'll start to take that poor raggedy companion's presence for granted, and we'll be looking again.

This is the same reason we have to stay in the word, find a body of believers, and pray without ceasing.  Practice clinging to truth.  Someday we will be glad we didn't cast it aside to go play with something else.

And it might just be today.

Maelynn and Bearbearbear in their younger years

Maelynn, Bearbearbear, and Sister Bear about a month ago.

Thanks be to God!

Tuesday, September 18, 2012

Stick Man

Remember this shot from yesterday?

Ah, art.  Kid art at that.  I know I told you this was uber special because we don't see much from Ryan's imagination.  We hear a lot of repeated lines from movies and apps, and well, we just don't hear imagination.  Where you could give another kid a pencil and a bulletin *ahem* piece of paper in church to keep him happy and quiet, not so for Ryan.  

For years, when I see work that was supposed to be things like "draw a tree" or "draw your house" we got nothing.  Then we got the words "draw your house" stretched to fill the space.  Expressing his thoughts through a drawing hasn't been his forte.  

There are a lot of cute things about that little red man up there.  The lack of a body, the super long legs, the spiky hair... all cute kid-stuff.  And yes, the frown.  I know.  It bothers me.  Eric and I talked about it, and it looks like he drew himself and Richie and Maelynn.  He was having a bit of a rough morning when he drew this.  

But that is still pretty obvious stuff.  Look closer.  Think about drawing something like this yourself, and notice what is missing.  


There are sockets.  There are no eyes.  

Eye contact is no picnic for these kids.  

I might be reaching here, but it seems to me that maybe leaving out the expressive part of the human eye was not an oversight.  Rather, it is a reminder that there is something my sweet boy just can't stand about having to look in someone's eyes.  It's nothing personal.  It is just hard.  

As a parent, one of the first things you want to instill in a child is respect of others... and of yourself, for that matter.  For kids like Ryan, there is something unexplainably impossible about looking into people's eyes.  When he was just two, I learned a trick from a behavioral therapist assigned to us by ECI (Early Childhood Intervention).  He taught me to take Ryan's little hand and put it on my cheek.  That would draw his eyes upward... or at least his face... to help him learn to show he was paying attention.  

I still do that sometimes.  Sometimes, I just want to look into those bold, blue eyes for a second.  I want him to see his mother's love in her eyes.  I wish that was a comfort for him the way it was for me. 

He is better at eye contact these days.  But almost always, when he chooses to look someone in the eye, there is something fun going on.  When I see the most eye contact is tickle time, or maybe when I'm bringing him the iPad, and shortly before I hear the "thanks Mom" we worked so hard for.  

Days are busy.  Life is messy.  Bills are due.  Drinks spill.  The calendar overflows with good things to do, and many more barking for attention.  I need someone to reach down, take my hand, and remind me to look to Him for my comfort, my peace, and my reassurance.  Often I need something to remind me look my Father in the eye.  

Thanks be to God for his loving hand. 

Monday, September 17, 2012

Worship in a Different Light

Sleepy.  So sleepy.  It was rather soupy weather outside.  Nice and dark, cool, and drippy.  Perfect morning to be snuggled under the covers.  In Texas, this is the closest thing to autumn we get, and it is most definitely savored.  But the bed's call doesn't have as much pull as worship and education, so after the fifty-minute trek to church, we found ourselves nestled together in the front row of our CE class.  The kids happily plugged into their classes, we were free to enjoy the study of Galatians with our peers.


There have been some changes in Ryan's CE class, and that's okay!  Changes happen.  While changes aren't fun for him (or us for that matter), they are good.  Like weight training.  If you seek to build stronger muscles, you must gradually increase the weight you're lifting.  If you always stay at the same weight, maintenance might happen, but reaching potential requires stretching your limits a bit at a time.  And stretching limits can be quite uncomfortable.

The past couple of Sundays, I've been needed to calm Ryan in CE.  This Sunday, I'm thinking we might have it under control.  The first couple of times the door opened, it was just someone coming in late.  Delivering something.  Needing someone else.

Just as I began to settle in and mentally dig into the discussion of Paul confronting Peter, there was a familiar face at the door.

I smiled, gathered my things, and headed to Ryan's room.

So many people I have hung around seem to think that worship is a one-shot deal.  You get Sunday morning.  Okay, maybe it's a two or three shot deal, depending on your denomination and choice of congregation.  Worship is a place to go and a thing to do.  It is almost certainly tied to music... and while I LOVE church music, I am convinced that the most powerful worship has nothing to do with music.

Although worship is corporate at times, the immediate picture in our heads of a church service can't be the only worship in our lives.  Worship in its most complete sense cannot be put into a box only to be opened at certain times and in certain ways.  It happens in several ways, or should be, even in every corner of every church, even when one person is cleaning the toilets.  Worship always flows from a heart that wants to glorify God.  Yes, music can be part of it.  No, I'm not telling you that you don't have to be part of a body of believers.  That is essential to growth and obedience.  

Now before you go to iTunes in search of another praise music download, I'm still not talking about music.  Worship in this sense is all about heart.  Attitude.  Willingness.

Extending grace to the person who cuts you off in traffic.

Tipping the bad waiter anyway.

Taking a solid, loving stand for truth.

Caring for those who cannot care for themselves.

Doing your best at work, home, and in all you do...  whether or not anyone is watching.

Thanking God for the grace given to us to complete these tasks, and completing them and a host of others with a true heart gratitude and understanding that it all comes from Him.

Worship is saying, rising from the ashes of pain, with fresh tears staining your face and sobs in your voice, that God is good.  He is love.  And He is sovereign.

There was a time when I prayed hard, before we received Ryan's diagnosis, that it wouldn't be autism.  Please God, please.  Please.  I can't do this.  It can't be this way.  I see what others go through and I just can't.  Please.

You know how that turned out.

No, I do not understand it.  Yes, I do believe that God can do anything.  But if I truly believe that God is sovereign, I must let go of my need to know why.  Was our prayer answered?  Yes.  Not in the way we'd hoped, but it was answered.  Will we ever know why our son has the challenges he has?  Probably not.

But we can ask to what end these things are in our lives.  And to that question, I have seen many answers over these past few years.  God has big plans for Ryan, just as he does Richie and Maelynn in their neurotypicalness.

For this Mama, a part of worship is freely giving my time to help Ryan acclimate.  Right now, at least for the past few Sundays, I have the privilege of helping my son and his church aid learn the best way to help him participate.  The newest challenge is sitting in a chair instead of laying on the floor during CE.  In the worship service (there's that word again) it's teaching him to listen.  To at least read along with liturgy.  It's baby steps, meeting him where he is and gently, lovingly guiding him.  The larger part of that is showing him how much it means to me.

But I thought you had a willing, helpful, caring aid and teacher in CE?!  Right.  We do.  But I'm his mother.  And although we couldn't function without their willing cooperation and loving acceptance, when it comes right down to it, I'm his mother.  I know him and love him, and I want to help.  I must help.

Isn't it disappointing to have to leave class?  Well, yes and no.  I wish I could listen.  I wish I could sit there, sip coffee, and dig into the word that way.  It's great that so many people get to do that!  But Ryan is only little for so long.  And he's been entrusted to us.  And I can't help but come clean and admit that I almost choked up walking to the class this time.  Not because I didn't get to stay.  Not because it's so unfair that I didn't get to participate in discussion.

Because he's looked forward to it all week.  He asks for CE and church all week.  And now he's on the floor, somewhere between fussing and screaming at having to sit in a chair.  Enjoyment isn't anywhere close.  

I'm not sure why.  I make inferences, and this time they're failing.  He does make it to his seat, he does manage to make it through.  I know that he had a little fun, because he smiled.  And you know what else he did?  He showed off a bit.  I told the lady who hangs out and helps him that he drew a picture of a little man at home... his first drawing from his imagination!!!

And he reproduced it.  Not just the man, but two little folks right beside him.

I'm not sure who this is, I'm not sure why he's sad.  But it might as well be the Mona Lisa in my house.  

In the same way, my perspective of worship is different.  We're grateful for the level of involvement we have in our church and community.  Not just grateful for that, but for the ways our boy has stretched our idea of worship.  It may look a little funny to the rest of the world... maybe it even looks unfair.  Maybe it looks like it shouldn't have to be this way.  

But for today, minute to minute, it is.  So we trust.  We soak in the comfort of God's sovereignty. We run back there when we're down.  We thank God for all.  


He has never, but never, failed us. 

Friday, September 14, 2012

Danger of Casualty

Gotta figure out something.

Have to find a way to remind me.  Burn it into my brain and onto my heart.

It's like nothing else.  Can't set a reminder on my phone.

Has to come from my heart.  Has to be second nature.

See, my husband sent me this link yesterday.

Now, this is ringing in my head.

“Siblings can be the silent casualty in a family’s battle with autism.” ~Andrea Warner, from this post on

I'm watching these two neurotypical, beautiful, precious children in front of me.  They're pretending.  They're playing together.  They're attached to each other enough that they act like twins.  They fight, they wrestle, they hug, they are together.  They're completely different from each other, and both so different than their brother.  

They both also adore their big brother.  

They try to play with him, and most of the time he tolerates them.  Below the surface, Ryan loves his little brother and sister.  In his own way and his own time, he shows that he loves them.  

So often I've wondered if they know how much they do for their brother.  How much we do and don't do that is a result of brother's challenges.  

I've wondered if they know how much we love them.  We tell them, we try to show them, and we pray that we aren't failing miserably.  The hard part is that we won't know how we did until they're old enough to tell us. 

See, they've already given so much.  So many hours to and from and sitting at the BARC, waiting for brother.  So many times they've been seated in the grocery cart, perfectly calm and quiet, while we fought to keep Ryan from injuring himself in a meltdown.  

I wonder if they noticed the stares. 

If they didn't, I wonder when they will.  

We figured out not too long ago that, since we held Ryan in PPCD for an extra year, there will be at least one year when all three kids will be in the high school at once.  Lord willing, they'll all be in band, too.  If you remember anything about school, you know kids can be cruel.  

We have to figure out a way to prepare them for this.  

We can't be so busy teaching everyone else about Ryan, autism, acceptance, and how everyone, no matter how different, is important to God and therefore important to us.  To teach them also that while their brother is special, they are special too.  

It's hard to spread around the attention.  When one kid needs you to do so much, and the others are capable of so much more right now, the time naturally goes in one direction.  Even here.  I catch myself all the time in awe and wonder of Ryan's accomplishment while Richie is writing his name, starting to read, and he and his sister are all the time using words like "quite" and "unacceptable".  They're even encouraging each other and Ryan.  

They're two and four, people.  Two and four! 

Last night, Maelynn was dancing around the kitchen floor, begging something of her Daddy and I that we can't deliver. 

"I want to be a high school kid!" 

"Did you hear your daughter, Eric?"  You should have seen his face.  We both erupted in a chorus of "not yet" and "we love having you little" but the day will be here all too soon when we're taking those pictures of all three kids in their uniforms, Dad in his band director shirt, and Mom in her band booster shirt.  Then it'll be a cap and gown.  Then another.  Then another.  

I pray that, long before they toss their mortarboards and head off to their own wide open spaces, they will have stood the test of security in who they are.  I pray they will have been so grounded in their faith and knowledge that, when they have a chance to stand or turn away, they stand.  That, whether for their brother or another person, their second nature is one of loving defense for those who may not look or act like everyone else.   

All of that in the process of becoming who God meant for them to be.  Richie and Maelynn are both so much more than and autistic person's brother and sister.  They are each, themselves, wonderfully created.  They are each potential great leaders, wherever they go and whatever they do.  I am proud of them, and I love them each in a way I can't possibly put to words. 

But I will do my best.  

Gotta figure out a way.  Several ways.  

I want growing up in our family to have blessed them.  Prepared them.  Encouraged them.  

They are so much more than Ryan's little brother and sister.  I pray that growing up in our home will cultivate and grow them to be all they are meant to be... which I think will be pretty amazing.  I mean, look at 'em!

Thanks be to God for my amazing Richie and Maelynn!

Wednesday, September 12, 2012

Out of the Stream

"Maybe someday I won't be so preoccupied with us all swimming with the stream."  ~Me, in yesterday's post, Explaining

We are all unique.  We are all created in His image, yet somehow differently put together with varying likes, abilities, issues, strengths, weaknesses, talents, gifts... the list goes on.  We are also socially different.  We range a thousand different ranks on the scale between introvert and extrovert, people person and incredibly shy.  But even on that rainbow of differences, most of us understand that we're supposed to speak when we're spoken to.

A world ago, I would have had a hard time understanding the truth that some people run on a separate operating system than the rest of us.  I might not have understood.  I'm ashamed to say that I might have mistaken it for an excuse to allow bad behavior.

Can I tell you how much I hate saying that?!  I hate that I felt that way.  I hate that I was one of the people who smiled, but immediately thought, "If they'd just... then he'd..." always sure that I, having laid eyes upon said child for the length of a dinner or pass in a store, had the answers.  Basically, I was saying that, given the chance, I could do better.

I was wrong.  I couldn't have been more wrong, to be sure.

Yes, there are times when kids are just out of hand or out of line.  There are definitely parents who need to step it up.  Disciplining a child is hard work.  It's not fun at all, and there are times that you just wish they'd mind so you didn't have to be the referee again.

The truth is that not every child is capable of the same things every other child is capable of.  For one child, "hi" may fall out of the sky.  For another, hours, days, months, years of therapy to just hear that one word.  And some never get it.

If anyone could be a fly on the wall for a few days at our house, they'd see several things.  First, that we're incredibly, painfully human.  We make mistakes, we argue, and generally get selfish just like the rest of the world.   But what I hope they'd see is that, in most conflict situations between any combination of us, we're working to teach our children how to be blessings to society, not rude, overbearing, and mean-spirited.  We try to model good behavior, nice manners, and a host of other things that are necessary to fostering healthy, kind dealings with people.

However, there is one among us who runs on a different operating system.

While my two and four year old know please, thank you, and the other polite words and how to use them... seemingly out of the sky, we didn't have to work that hard... we've worked our tails off teaching Ryan these same things.  Some of them he has a handle on, but others... especially emotional, relational cues that should result in a response from him... are just not there.

Eye contact, for instance, is not something that Ryan is okay with much of the time.  Once you receive eye contact, you are in his world.  Even once you've received it, you may not receive it all the time.  It may be a fleeting thing.  This is not because he hasn't been taught; rather, it is part of Ryan's brand of autism.

No, we cannot model, teach, punish, berate, or otherwise get it out of him.  Autism is not an excuse for bad behavior.  Look at our other children.  Spend a little time with them.  Then spend time with Ryan.  Then tell me that we're bad parents.  That we're lazy and incompetent.

Why would I think that anyone would think that way?  Because when people repost a meme that says "Back in my day, behavioral disorders were called being a little #%$*" and "Autism: an excuse for your child being an @$$#*!#" that's what they're saying.

They're saying that we're incompetent.  That we haven't tried hard enough.  That we're maybe even making up a diagnosis to cover for our lack of parenting skills.

I won't lie... it stings.  It smarts.  It cuts my heart to the core to realize that there is no shortage of people running around the planet, clicking around on Pinterest, meme generating sites, and Tumblr who think this is hilarious.

Every time I accidentally run across one of those, my first reaction is to comment back.  But you know, when someone's made a joke, they think it's funny.  If you think that's funny, then you've decided that maybe my child is a joke.  His struggles are a joke.  My struggles are a joke. And I'd rather spend my words and effort here, where people who click do so because they want to read.

I've been there.  I've been that person who thinks they have it together.  There's an answer for everything, and it's all in my head.  If you'd just listen, I'd tell you how to fix that.  And I had "MY child won't act that way" syndrome.  The piety was thick.

And now I'm choking on it.

Autism, Asperger's, ADD, ADHD, ODD, and a host of other things that are unseen except to the person who knows that type of behavior... they're all real.

They're not the result of lazy parenting.

They're not the result of being given whatever the child wants.

They're not in our head.

And they're not going away.

The challenges and struggles that come with them are definitely not joke material.

I know I can't make everyone understand.  I know that there will always be someone who thinks that we just let Ryan have every little thing he wants and bow down to his every whim, although that couldn't be farther from the truth.

But I can come here and place a message in a bottle to someone who might find it at a time when they're willing to hear... and change... their perception of my reality.  Maybe at some point someone will read this, and the Lord will use it to soften the hard place in their heart that allows these things to be hilarious.  Maybe they will be led to have compassion and mercy on those who were created so differently.

But how do we live with the fact that not everyone will care?  How do we deal with the fact that we'll be misunderstood and hurt by people- even good folks- who just don't understand?  What do I do, just boycott Pinterest?  Write a nasty letter?  Quit going to church?  Stay home and never go to the movies, grocery shopping, or anywhere else?

Well, no.  Pinterest has been crazy good for my sewing, crafting, and cooking abilities.  And well, the nasty letter is a bad idea on several counts.  First, I don't do "nasty".  I'm called away from it to kindness, faithfulness, gentleness, goodness, and temperance.  And the rest?  Well, I need to get groceries, we need the fellowship of the body, and movies are great stuff.  Rather than giving up, we must remember that this is a free country, where free speech is something that comes with our citizenship. And it is for all of us to use.

We can remember who we are.  We have to rest in the knowledge that God knows us and knows what we're up against, and will give us the grace and mercy we need to do what we can in a way pleasing to Him.  And we absolutely, positively must remember who we are to live to please.
Part of Ryan's autism is not being able to keep up socially.  He does not understand the concept of rudeness, respect, or even the social cue that comes with whispering or just not talking when everyone should be quiet.  It's not for a lack of teaching.  It's really not his fault.  He really can't help it.  We are committed to doing every thing we can to balance his needs and who he is with the need to teach him how to relate to others.

So I will ask you to do one favor for me, which most of you likely already do... the next time you pass by a screaming child, or introduce yourself to a child who looks at the floor, hides in mom's skirt, or seemingly refuses to answer a question, I beg you to have mercy on him.  Have mercy, also, on his guardians.  They likely spend more hours begging for a yes or no, a hi or bye, than you can imagine.  I can tell you from experience, it's a different world with Ryan than it is my littles.

Thanks be to God for the free speech right that allows me to defend my boy and so many others like him.

And thanks to you for caring enough to read.

Tuesday, September 11, 2012


"Whenever I see your smiling face, I have to smile myself... because I love you..." ~James Taylor

Yesterday wasn't at all helped by Labor Day.

Yes, I know it was last week.  Don't worry, I sent everyone where I was supposed to send them yesterday.  But while I was telling Ryan that yes, it was a school day, and reminding him how we act at school, both after a bit of a meltdown about having to go, he about shocked my socks off.

As he waited for me to get his toothbrush ready, he said very clearly, "Mommy is confused."

Once I got through laughing internally, I told him that no, I'm not confused.  Today is Monday, and most Mondays we will go to school.

He has a thing for time.  No, it's not some superhuman power, and it's not the one thing he's into.  And no, he can't tell you what time it is if there are no clocks around.  It's not a savant type ability, but it is definitely a hallmark of being Ryan. Maybe he's just really in tune with his inner clock.  But more likely, I think it's a manifestation of an addiction to routine.

We first discovered it two years ago when we were at my Mom's house in eastern Oklahoma.  We left school to see his then therapist, Ms. S.  We were away for a week, and had been gone since the previous Friday.  He'd been out of routine for days when, on that Thursday, he came to the bathroom where I was attempting to do something to my hair and reminded me that it was time to see Ms. S.

Quickly, and in the usual know-it-all mommy style, I began to tell him no, that it wasn't time, and why. But then I glanced at the clock.

And thought about what day it was.

He was right!

The next year, in kindergarten, he was quite the swing addict.  LOVED to swing.  He got to the point where he would melt down over not getting a swing on the playground.  We tried to figure ways around this, and even the other kindergarten teachers tried to help make sure he got a swing without being unfair, of course.

Then one day, they noticed that he would say "11:34" and something around it that led them to realize that he HAD to walk under the clock in the hall at 11:34.  But that would mean he was at the end of the line from lunch to the playground, which meant no swing.  Being the wonderful people they are, they figured a way around all that.

There are all these cool things that tell us that he has thoughts, opinions, and preferences, but so few times do they fit in as something socially acceptable.  The swing addiction plus the 11:34 thing brought forth a new stimmy phrase at home.  "You love to take swings away."

I wish I had a nickel for every time I had to explain that one to him, or had to tell Richie it wasn't okay to repeat. And why.

Often I get hung up between smoothing the road for him and teaching him the ways of the rest of us. He has to learn.  The only way he will learn is if he's taught. But how do we teach this?

How do you teach someone to smile back when someone else smiles?

How do you teach someone to say "Hi" when someone else says it when they do not understand that concept?

And how in the world do you deal with what could happen on the other end of that conversation?

I've attempted to cover over his refusal to make eye contact or say hello in return so many times. Each time, it seems a bit more trite.  I hate to say it, but I dread the day someone is rude to him or myself because of this explanation, or just his seeming rudeness.  And that's all it is.  Rudeness is actually not a concept he understands at this point.   And if it's not a concept you understand, isn't rudeness not possible?  It's only perceived.  And if it is perceived, what am I to do?

Educate gently when appropriate.  Following that, whatever I've done is done, and I've done my best and so has Ryan.  I cannot assume responsibility for anyone else's reactions or actions. I should apologize when appropriate, and honestly, "I'm so sorry... he doesn't mean to be rude" are the first things that pour from my frantic attempt at explanation.

But Ryan truly doesn't understand this concept. For him, smiling and saying hello is somewhat like waving when you're driving.  You don't wave at everyone.  On the chance that you do spy a familiar, friendly face, in an expression of acknowledgement and maybe joy, you wave and smile.  As a neurotypical person, we've learned to, in certain situations, say hello at a certain proximity when walking about among others.

The heart behind what he didn't say is not likely a spirit of anger or malice.  Rather, his seeming oversight is a part of his makeup.  We have done our best to teach him in several different ways about social situations.  We prompt him to speak when spoken to.  But very seldom is any greeting or degreeting spoken, and if it is, it's delivered to the ceiling tiles or the wall.

Mostly.  The flipside... the small percentage of the people he meets that make it into his world... will see the most beautiful smile, and the sparkliest, deep blue eyes on the face of the earth.  Once you're in Ryan's world, you're hooked.  It's impossible to see that face without smiling.

The best part of it is realizing that he doesn't wave.  He doesn't usually say hello.  But when he's happy to see you, you will know.

Every afternoon, he smiles and flaps his hands (his stim behavior) when he sees me.  Mostly I wave at him, but sometimes I stim right back.

When Ryan sees someone he loves and hasn't seen in a long time, he will often smile, then look to the ground and cover his face with his hands.  Eye contact is hard when you're really excited, for some reason.  Maybe the pictures of that person he has in his memory have to line up with the one before him.  Maybe someday he'll be able to tell me.

Maybe someday I won't be so preoccupied with us all swimming with the stream.

Maybe the best and most effective acceptance of Ryan is that of those who stand in the gap.  For the people who know him best are the most important to him, and those who are the most important to him will know him best.  So often it seems that his only chance is in how well his mother explains him.  But even my best attempts at shoving Niagara Falls through a drinking straw come up short.  To know this kid, to understand him, you have to spend time with him.  Armed with my explanation and even a knowledge of autism basics (those two words would be hilarious together if the ridiculousness wasn't so frustrating), you're still likely to run into snags.

Then, when those snags are explained to me, it's almost always a facepalm.  Something completely simple I've completely left out.  And I feel terrible.  I could have said that one thing that would have made you aware of that one thing, and I didn't.

As hard as I try to explain Ryan to those who need to know (therapists, teachers, aids, doctors, the list goes on), as practiced as I am in it, no explanation of mine can put in a bottle... or a blog... or a dissertation... who Ryan is.  No psychologist's report can explain every nuance of his life and personality.  I have a file drawer full of opinions, rules, modifications, and reports, and not one of them completely explains him.  Not one is a handbook for our life with Ryan.

God knows the hairs on Ryan's head.  He knows Ryan far better than I ever will, and he knows me the same.  I used to think that I could rest only knowing I'd done my best. But if that is true, then how do I rest on the days that I have not done my best?  Those are the days I need rest, reassurance, and peace the very most.  They are the days when I need a confidence refill and, well... a hug.

This is why my reassurance and hope can only come in the grace and mercy of Christ.  Even on my best day I cannot smooth all of Ryan's paths.  Honestly, most of the time even Ryan's and my best together aren't enough for the world's general social and societal standards.  Too noisy, too wiggly, too quiet, too unpredictable... too high-maintenance.

But I have spent more time with Ryan than anyone, and I can tell you in all honesty that there isn't a sweeter soul on the earth.  He has so much to offer.  Anyone who has taken the time to get to know Ryan would whole-heartedly agree.  Even the therapists who have been screamed at and had to endure meltdowns to coerce him to put a cherry to his lips or just ask for something instead of yelling have all been crazy about him.

He has worked so hard for every little thing.  Every hello, every request for even the simplest thing is something he's worked so hard for.  I've watched the same skills that we all slave for in Ryan seemingly magically appear in his brother and sister.  I see them blow by him in speech and language development, and nearly every other little thing they try.

And yet, they adore him.

Thanks be to God for love that covers over differences, yet reveals beauty and similarity.

Thanks be to God for the love of Christ.


Monday, September 10, 2012

Tale of the Blue Shoes

In July, while we were doing the bi-yearly mass shopping trip on our way home from TBA, I tried to convince Richie that he could have some new tennis shoes.  Nothing doing.  Not ones like brother, like Daddy... not even Thomas ones!  He was so attached... so loyal... to his old tennis shoes that he wasn't interested.

Then I remembered that in a fit of cluelessness I bought Ryan a pair on clearance last year that would fit Richie now.  They'd been too small for Ryan then, and he didn't like the closure. So I didn't make him wear them, obviously, but instead put them in the closet for Richie for later.  They're a size bigger than he really needs now, but I thought they'd be insurance if he got home and decided the blue ones were too little.

We got home and tried the blue ones, and he insisted they were just fine.  Okay then, son.  Wear 'em.

One week of school later, he barely keeps his shoes on if he doesn't have to.  Hmm.

So yesterday, while we were out shopping after a long trip to the zoo after church, I found some Lightning McQueen shoes in his size and handed them to him.  After an initial nose upturn, I convinced him to try them.

Guess what?  He didn't want to take them off.  Even with the stretchy string between them and the tags still on them, he wanted to wear them because they felt so much better.

As much as I'm tempted to giggle at him and shake my head, I know better.  Because he acts just like his mother.

There are so many things I have had to do that I didn't want to do because they were different... or just different than I thought they should be... and I've kicked and screamed and stomped and refused until I was backed into a corner.

Part of having an autistic child is learning.  Learning and accepting and changing.  Being planned but flexible.  Planning your heart out, then being ready to chuck the plans in the nearest lion-shaped zoo trash receptacle when the carefully planned outing goes screamy.

Please don't mistake those explanations for mastery in my life.  I'm still learning.  I still have fits of wanting to just do something easily.  You know, the same old thing.  But that's not what I need to do.  I've grown past that.

When you sign up for therapies (speech, occupational therapy, ABA, etc.) or even start school with a kid like Ryan, you are given suggestions for life at home.  So often when we heard these suggestions, they were overwhelming at best.  At worst, they make you want to slug the next person who throws out a suggestion.

The hardest of these times?  When someone suggests that there's something up with your child, and it might be something on the autism spectrum.

I can't tell you how bad I wanted to tell the people who first spoke those words to go jump off a cliff.  Now, I'm glad they did.

If you're just getting a diagnosis, or if someone has just suggested that you might check into these behaviors, the first thing you have to do is stop.


Yes.  Chill.  Take a deep breath.  Look at that sweet face.  And tell yourself over and over that no matter what label they give him, he's still the same kid.  She's still the beautiful baby girl you were so anxious to meet.  No matter what anyone tells you, this kid is created wonderfully.

Next, remember that these people know what they're talking about.  If you have reason to think they don't, fine.  Seek someone else.  But whatever you do, don't run from this.  Denial isn't going to help anything.  Early intervention is truly key.

It's going to take a long time to get a real diagnosis.  For about two years, it was "we think he might have something on the PDD (Pervasive Developmental Disorder) spectrum."  We were thinking Asperger's.  We started this process at 2.5 years of age, and it wasn't until spring when he was 5 that we got a diagnosis.  Then, it was buried in the middle of a paragraph, in about the third page of a multi-page report.  Maybe if we'd had more money, lived closer to more resources we'd have had a diagnosis sooner.  So what did we do in the meantime?  That's a lot of time.

It is.  And not a day should be wasted.  We gradually accepted that there was something up, and we had to get to work.  We listened to therapists, we worked with him, trying to integrate all the things the experts told us as best we could.  No, we didn't use everything.  But the stuff we did use helped immensely, and much of it can be found in our daily life even now.

Yes, it hurts to be told your child is developmentally delayed.  It's going to hurt.  And if there are people telling you that it is something you did, that you or your wife drank too many Diet Cokes or that you don't love your child or don't spend enough time with them, blah blah blah, don't listen.  Smile and nod and keep plugging away.  I've heard different folks on different websites talk about mourning the child you thought you had, and while that makes a certain amount of sense, it's not quite how I'd explain it.  You will mourn your expectations of parenting at times.

But make no mistake... this child is not lesser in any way.

If you will work to embrace this way of life, recognizing preconceived notions and putting them aside as need be, God will use your experiences with this child and other people as their personalities and lives rub against your family's life to give you life more abundant than you can imagine.

But you have to be willing to let go of the blue shoes.

The longer you hang on, the more they will pinch.

As you let go, as you take up the schedules, routines, techniques for speech, OT, and every other little thing under the sun; as you reach out and learn about what makes him tick and how you can smooth the road, it begins to feel better.  You stretch out, make new habits, and begin to see how much you've outgrown the before time.

It's a long trip.  But you don't have to make the whole thing in one day.  You'll go through more growing periods, changes, and you'll begin to see progress.

You're going to have days when it gets hard.  There will be times when you wonder if there's been any progress at all, and you long for the days of innocence when you were brand new parents with brand new, white-picket-fence expectations... even as I write those words my eyes well.  But God made Ryan.  God is sovereign.  And at the end of the day, that is where my heart rests.

That little guy who people warned you would change your life?  Yeah, they were right.  If you let him, God will use him to make you a better everything.  It won't be easy.  But you have the internet, books, support groups, and the same God leading you who has led you all along.

Easy?  NO way. Worth every minute?


Don't believe me?  Look at this face.

Thanks be to God for Mama's little Firework.  

Saturday, September 8, 2012

The Game

Like I said yesterday, we were determined to get to the football game last night.  We made it! But first, we got one of these at school.

Yes, he had a wonderful day at school!  He was so good that he even got free time to play with the other kids, then got to choose a toy from the treasure chest.  We are so proud of our little guy!  Being good will wear you out, though.  He keeps falling asleep in the van on the way to Waco.  

We waited in the coolness of the van until we heard the drumline.  In Texas, we don't just run higgledy-piggledy to the stands.  We march into the stands in a single file line.  Some of these traditions, like marching into the stadium are so professional and just flat awesome!  I just love Texas band.  Love it.  

Friday night in the south is more than an institution, especially in small towns.  You just go to the game.  There's no question.  You dress up in all your school-spirited bling (yes, there is a large market for this, and yes, people pay crazy amounts of money to be outfitted in the perfect Goat bling.  And yes, I just capitalized Goat.), haul in your stadium seat, say hello to everyone on the way in, and head to your seats.  

The athletes and cheerleaders are the town rock stars.  Most dream of having their little boy as the starting quarterback or their daughter the head cheerleader.  I'd say that most of the stereotypical idea of the importance of football in a small town is definitely accurate.  And down here, we take our marching band pretty seriously, too.  

But before I launch into how many thousands of dollars and hours of work we put into just the contest show and how insanely important marching contest, and our bi-annual shot at advancing to the area, then hopefully state contest, I have to stop myself.  I could go on forever about band; it was my first love. I've jumped up and down and celebrated the superior ratings, and I've dried the frustrated, painful tears of kids who came just this close, but a judge made a decision, and that was that.  Just trust me that it's crazy important.  As with anything, it varies from place to place, but it's still important. 

The band was in a different place than usual, and honestly, I was loving it!  It was rather enclosed and it was easier to keep a lock on each of the kids, although Ryan did manage to take off a few times.  Four to be exact.  But the rest of the time, we did this: 

No, these aren't our uniforms... they're our "we love our kids more than our band uniforms" uniforms.  We do our best to keep the kids safe in the heat.  And boy, was it hot! 

Down here, you see my favorite baritone player, J, and my little princess.  Mae about flipped at getting to see her in action!  And what a low brass section!  Nice big sound, but no overblowing nastiness.  

Richie ran up and down the stands, dancing and playing with the other band directors' kids who aren't yet old enough to be in high school band. And oh, how he loved stealing some moments with his Daddy!  In this shot, you can sort of see why we were in a different place.  Something about construction on expanding the visitors' stands. 

Ryan spent most of his time down in front with the directors.  They brought him the treat of a special drum with a practice pad, so he got to play along with the big kids! 

I can't tell you how much fun it was to watch all the kids.  Maelynn and Richie danced and drank in all the things I have always hoped my kids would.  Just like this: 

And Ryan went above and beyond.  While the kids reminded me to savor the experience, Ryan helped me see it in a completely new light.

He not only played the downbeats, a few rolls, and some more little things with bad hand position, but he was watching the drumline and trying to copy them. For real.  Not that he got terribly close, but he was trying!  And it wasn't just the drumming.  

High school and college bands always seem to have at least a couple of things they chant and cheer with.  After the first run of "Go Goats, Go!" Ryan decided to yell just that, with much enthusiasm!  The flute girls about lost it!  Everyone was so proud of him, and just seemed to enjoy all the kids.  

And I gotta brag on my husband's drumline.  They let Ryan hang out around them.  They tried to keep him out of trouble.  They even took some sticks to the hands and face, accidentally of course, just trying to help Ryan hang out and fit in.  All with a sincere smile. 

We had our rough moments.  During the last part of the second quarter, the band goes to the end zone track to warm up.  Ryan spent most of the second quarter and half time bolting to get to the field.  So most of half time was varying degrees of meltdown, but on the whole?  

Completely successful.  The kids were dirty, sweaty, filthy, and exhausted.  We got home after waiting in traffic at about 10:45, and I slid them all through the bath with a thorough scrubbing, and Daddy got in just in time to put them to bed about 11:15.  I was exhausted, sweaty, and ready to fall over too.  The day was long, with much to do and a trip to Waco and back, and cookies to bake... but it was all too worth it. 

This morning, first thing, as Ryan crawled out of bed, know what he said?  

"You want to go to the football game!"

And we've heard it all day.  Our next home game is in two weeks.  I'm not sure they can wait that long!

"You have given him his heart's desire and have not withheld the request of his lips." Selah  Psalm 21:2

So many times, He's given me what I wanted before I could express it in words.  This is no exception. 

Thanks be to God!

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