Wednesday, February 29, 2012

Random Joy

Do not enter, Mommy!

Number 22. 

It's a gray elevator.  

It's a blue elevator.  

Elevator bread store.



Oyoh!  Oyoh!  

Ayo ayo ayo!

Red... red... red... red... red...

Enjoy... your... meal.

Vacuum intake nozzle!  

Wondering if I've lost it yet?  If you're a regular to this blog you know I already have.  Nope, these are things Ryan spits out at random.  Well, some of them make sense if you were there.  Actually, almost all of them make sense to me.  Every time we see a "do not enter" sign on the road (about ten times on the way to therapy) Ryan says "Do not enter, Mommy!"  I must respond, or he will repeat it until I do.  I know the elevators, and the elevator bread store is the Clifton Robinson Tower for all you Baylor types.  Went there to get my parking pass right before we went to the bread store for the first time, and well, it stuck.  Red... now that one's cute.  Anytime he sees a flashing red stop light, he says "red" with... every... blink.  Every time my microwave goes off, he says "Enjoy... your... meal"  with the space it takes to roll across the display, because my Mom's does that. Yeah, we don't see her but about twice a year.  He's pretty amazing like that!

My personal favorite is "vacuum intake nozzle".  It's a new one, and it's awesome.  Totally random.  I'm not sure where at all it came from, and he spouts it off, usually while stimming.  It's a happy thing, so I guess it's okay.


That's where the rubber meets the road with so many things.  When we were first figuring out that something was up with him, I was quite frantic that he NOT stim.  At all.  It was something we tried to discourage, mostly because of my "this can't be happening" attitude.  He stood in his room, hitting a hanger on a doorknob, and stimmed until he was sweaty when he was about 2.  At first it was cute.  two hours later, it was scary.  While there are still things we avoid, and we try to curb too much of this behavior before it gets out of hand, or when he's stimming on something dangerous (like the wheels of the van as I drive away after dropping him at school in the morning) we try to distract him.

But for the most part, it's cute.  He's cute.  If you saw him flap those hands, stiffen his head and shoulders, and hum, you might think it was strange at first.  But then you realize after a while that it's part of who he is.  It's how he says "DUDE!  This is so COOL!"

Honestly, it's one of the cuter things about his issues.  It's part of Ryan being Ryan.  No, I didn't say Autism is cute.  One of the behaviors, when coupled with that sweet, traffic-stopping Ryan smile, is dang cute.  No, Autism is quite frustrating.  It's quite scary.  And as long as it's so a part of who he is, why can't we see the cute in it?  I mean come on... vacuum intake nozzle?  That's downright random funny-ness.  And there are different stims.  The happy stim, for a very short time, on something random that won't always be around makes me smile.  For a long time it scared the daylights out of me.  A lot of things... the uncertainty of the future for him, the fact that he still doesn't tell you his name, that he doesn't seem to sense danger... these things are frightening.

There are so many things that need work.  There is so much to exercise patience and caution and planning over, that I'm finally getting to a point where I can say it.  He's cute.  And some of the different things he does make me smile.  Yes, we will keep teaching him to behave, to curb the behaviors that aren't socially acceptable.  But if we spend ALL our time around him nitpicking, we'll miss him.  We'll miss how cute he is, how sweet he is, and be serious all the time.

I've spent a lot of time reading article after article on Autism and dealing with it, and have come across quite a few people who say that every parent, upon diagnosis, must allow themselves to grieve for the child they thought they had.  I agree that there is a sadness, even a mourning.  There is mourning that takes place, and it is long... but it should not be for the child.  It should be set aside for the fact that we were so wrapped up in what we wanted that we almost missed the child we DO have.

Now I'm not saying that none of us should ever be angry, sad, frustrated, or ever have a negative feeling.  I'm not saying that we should stop therapies and figuring out what causes this mess.  There is nothing I can personally imagine that is more disheartening at best than watching your child suffer.  I can't tell you how often I wished I could take away his fears.  How I wish I could give him my ability to deal with the dishwasher running while I eat.  Or how many times I've been to the doctor with him to find out something was terribly wrong and I had no idea, because he can't tell me.  I can't tell you what it's like to constantly be hanging on to and prairie-dogging over where your child is.  I've had countless nightmares of losing him in a crowd.

So why... why in the world would I relegate myself to a life of completely focusing on negatives, never ever allowing myself to laugh at something cute he does?  Just because he's different... his behaviors are often very different... doesn't mean I'm sentenced to a life of stoic correction.

We're learning to try to see more through Ryan's eyes.  We're working on focusing on being more purposeful, more prepared.  But it's a hard balance between protection and prevention and remembering to live life as much as we can.  Because you know what?  His birthday is coming this spring.  He'll be seven.  Yep.  SEVEN.  Yesterday he was three.  The day before that he was throwing up his first birthday cake (remember that, Mom and Dad S?) and the day before that he was born.  I remember the joy of having him... even the thought of having him... and vaguely remember the innocence that we slowly lost with each missed milestone.  The pain of realizing the first time, in a little kid church class, that he was very much different than the other kids.

We've all felt enough of it that when we can safely relax, see the innocence and humor when we can, we should.  Keep the plates spinning, keep seeking treatments, social-storying, preparing, but be careful to hang onto the kid-ness while we can.  Because someday, as I realized when Ryan stimmed and said "it's a school" as we drove by the intermediate school, they'll be in that school.  Then middle school.  Then high school.

I'm not discounting the pain or the frustration... but my word, don't we lose enough of their childhoods to symptoms, red flags, and therapies?  I'm  We're going to promise each other and Ryan, Richie, and Maelynn that we'll hear their words, their preferences, and though we're not able to understand everything, we'll do our best to let them be kids.  We'll celebrate the times when we see the twinkle of excitement in their eyes, no matter how few and far between they may be.  Because he's our boy.  He works so hard at so many things that we take for granted, and we are proud of him.  Whether he waves at me and hollers "Hi Mommy!" like Richie when he's happy to see me or jumps and stims and hums, I'm thrilled that he's happy to see me, however he shows it.  And while I hold him as he suffers from whatever it is that's making him kick, scream, hit, and cry, I need to be able to close my eyes and see that snapshot of his grin.  To hang on to the beautiful boy God made him to be.

Close your eyes
Have no fear
The monster's gone
He's on the run and your daddy's here

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better

Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we'll both just have to be patient
'Cause it's a long way to go
A hard row to hoe
Yes it's a long way to go
But in the meantime

Before you cross the street
Take my hand
Life is what happens to you
While you're busy making other plans

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better

Beautiful, beautiful, beautiful
Beautiful boy

~John Lennon

Thanks be to God for our beautiful boys and beautiful girl, and all they teach us.  

Monday, February 27, 2012

Facepalm Mama Meets Unshockability

“My flesh and my heart may fail, But God is the strength of my heart and my portion forever.” – Psalm 73:26 

There are a thousand and one reasons to be thankful for this little nibble of scripture.  For most of my life, I've seen this with the words "flesh" and "heart" and thought, well, my body does fail.  We will all die.  We all get sick.  But today, oh today... the day after yesterday, this verse is like a warm embrace... the exhausted, collapse in a heap into my husband's arms kind of embrace.  The kind where your mother would stroke your hair and tell you it's all going to be okay as the tears spilled over your cheeks.  
Because my flesh fails.   

I get tired.  

I get angry.  

I get frustrated. 

I don't know what to do.  

I don't know how to help.  

I could only keep him from hurting himself.  Nothing I said was right.  Nothing I did was soothing.  Nothing.  

We had a major meltdown kid of day yesterday. First, he did great in CE, but toward the end as they often do, he worked a puzzle.  Well, all except for one piece.  One blasted piece.  He had to finish.  His CE teachers tried so hard to find the piece, to gently convince him that it's okay, and when they'd exhausted what they could do, they came to get me.  I held him in the floor.  He kicked, hit himself in he head, hit a little at me... but with their patience and help in turning off lights, turning on soothing music, he calmed.  We went to the service, and he was great.  No big deal.  His usual little echolalic sayings, bubbling over into the days of the week, months of the year, annoucing "February 2010" a couple of times, which I think is funny because it's when his sister was born.  

Then after church, we were to have a little reception and meeting with an elder as part of joining the church.  

New room.  

Brownies on the table.  

He had one, simply because they were there, and he grabbed one before I could stop him.  Then wanted another.  

I said no.  

Daddy said no.  

It was on like Donkey Kong. 

He screamed, kicked, hit, and all I could do was keep him from hurting himself.  He is getting so big, so strong, that I almost couldn't do it.  Yes, I could have sent someone fro my husband, but you know what?  I have to be able to do this.  If I ask for Eric every time it gets hard, what am I going to do on the many, many days he's just not here?

Three times we tried to go back in.  At least three, anyway.  After the second or third, I just couldn't take any more.  My voice became shaky as I fought back tears.  The biggest hurt was that I could do nothing to calm him.  I feared I'd hurt him trying to keep him from hurting himself.  I'd honestly rather he hit me. 

The second hurt?  

It was largely my fault.  I hadn't prepared him.  I felt so stupid for not social-storying this to death.  We got out of church, and he expected to either go grab some lunch and go home, or get to "go see new friends" as he calls our community group.  He had no idea why he was ushered past the exit and past a plate of brownies and into another room, told to sit, and without lunch.  

COMPLETE FACEPALM.  Autism-mama facepalm.  I fell flat on my puzzle-piece wearing, advocating face.  This was unarguably a meltdown, this was not a fit-over-a-brownie tantrum.  The brownie was simply the pin out of the grenade.  

My flesh failed.  

It failed me, failed Ryan, and all the people having to listen to the whole ordeal. 

But then there's grace... 

A sweet friend brought him water, and offered to do anything she could, and was met with tears spilling over the dam I desperately tried to hold.  

Another member walked by, offering his encouragement to me.  

Even another came up and talked to Ryan, although he didn't acknowledge her at all.  

The elder we were supposed to meet with was merciful and gracious, asking just the little he had to ask, and offering a smile and empathy.  

Countless others simply treated us as people.  Ah, how lovely.  

One of his teachers sent an affirming, heartwarming, encouraging Facebook message to Eric and I that we found when we got home.  

His CE teachers were precious, offering encouragement to him and to us, never frustrated with him but frustrated FOR him, always eager to help in a gracious manner, and oh, are they ever a blessing.  

I did not find judgment for having failed.  I found encouragement, mercy, grace, and even thanksgiving that we were there at all.  

I learned and cemented many a lesson yesterday, not the least of which was that Ryan needs me to prepare him better, and that I need to remember that our normal is to overthink it all.  Over plan, then be ready to throw it all out the window at the last minute.  If I ever figure out how... if I ever master it... if I ever manage to completely grease the way for him without giving up life the way we believe we're supposed to live, I'm not going to let you know.  


That's right.  I'm not going to tell you how it's done.  I'm going to, if I have the chance, hold your hand, bring your flailing, sweaty, spent child a cup of water, offer to do what I can, and listen.  


Because that's how unshockable people operate.  

Thanks be to God for unshockable people, for they are the hands and feet of the Gospel.

Thursday, February 23, 2012

What I want to remember...

Thomas underroos.

Little booty with no pants and tennis shoes at the end, running around, proud that he put his shoes on.

Little girl with golden brown curls bouncing as she bops around the house.

Tiny voices singing "Twinkle, Twinkle, Little Star" and "Jesus Loves Me" in the grocery cart.

Princess shucking her shoes and socks whenever the opportunity arises (meaning she can reach them).

Princess donning bright pinks snowboots with capris... ready to go.

Princess nightgowns with a sleepy, messy-haired little girl in them.

That sweet voice saying proudly, "I got Boot-th!"

Snuggling on the couch with a wee one until they fall asleep.

Giggles and chasing after bubbles in sheer, unadultered delight.

The little blonde boy who says several times a day while Ryan's at school, "I need my pal Ryan."

The sweet, leg-flailing dance that little boy does.

The giggles of a little girl on her daddy's lap.  Her hero's lap.

The same little girl, holding daddy's hands, dancing with all her might in those soft bare feet.

Those sweet, soft, unspoiled feet...

These are things I'll miss so much.  They'll all grow up.  They'll grow into educations, jobs, friends, marriages, whatever God has for them.  They'll move on, they'll outgrow a lot of these things.  Their hearts, like their little feet, will likely become a bit worn.

Do they have to be worn?  Do their hearts have to grow hard, tired, and weary with age?

At times they will be hurt, but they don't have to grow bitter.

At times they will be tired, but they'll find rest.

At times they will be frustrated, but they will find hope.

I pray that we're modeling these things for them.  I know we fail.  I know we spend time in the wrong ways at times, but there is grace.  We're only human.  And they are God's creations, his children.

There are things I don't want to remember, too.

I'm tempted to forget the time I spent on the bathroom floor when I should have been playing.

I'm tempted to overlook the time the littles spend in transit and waiting on brother.

I'm tempted to take for granted that they adore their big brother, completely and without question.

I'd love to forget the fear that, in a fit of whatever, he might hurt one of them.

I'd love to quit worrying about him bolting or wandering when we're out.

I'd love to just be through with timers, schedules, boundaries, alarms, and the like.

I'd also love to do JUST ONE THING, just once, that isn't scheduled, social-storied, and planned to death.  With the whole family.

But you know what?  If I forgot all that stuff, I might forget all we've learned.  Losing the things I want to forget or just quit might make the things I don't want to forget a little less special.  Well, that and there's no way I can just quit or forget any of the things I want to.  But if I become too lost in the frustration of the moment, I might miss things like:

Maelynn falling asleep on Richie.

Richie falling asleep sharing a pillow with Ryan.

Maelynn and Richie doing their deal-level best to help Ryan calm down.

Ryan telling Richie "it's okay" when he accidentally makes a mess.

Ryan reading "The Going to Bed Book" over and over, and saying randomly, "I love the Going to Bed Book!"

Ryan wandering up to me, laying his head on my shoulder, and whispering "I love you mommy", ever so quietly... and it happens once in a long time.

So what to do, what to do?

Keep swimming.  Teach them to swim.  Teach them to fall in love, not with life, not just with each other, but with their Savior. Teach them where true help and hope come from... real love, lasting peace.  Teach them to fall in love with Him.  Not just once in life, but every day.  Not even just once a day.

"Love Song For A Savior"

In open fields of wild flowers,

she breathes the air and flies away
She thanks her Jesus for the daises and the roses
in no simple language
Someday she'll understand the meaning of it all
He's more than the laughter or the stars in the heavens
As close a heartbeat or a song on her lips
Someday she'll trust Him and learn how to see Him
Someday He'll call her and she will come running
and fall in His arms and the tears will fall down and she'll pray,

"I want to fall in love with You"

Sitting silent wearing Sunday best
The sermon echoes through the walls
A great salvation through it calls to the people
who stare into nowhere, and can't feel the chains on their souls

He's more than the laughter or the stars in the heavens
As close a heartbeat or a song on our lips
Someday we'll trust Him and learn how to see Him
Someday He'll call us and we will come running
and fall in His arms and the tears will fall down and we'll pray,

"I want to fall in love with You"

It seems too easy to call you "Savior",
Not close enough to call you "God"
So as I sit and think of words I can mention
to show my devotion

"I want to fall in love with You"

"my heart beats for You"

Thanks be to God for the moments.  All of 'em.

Tuesday, February 21, 2012

He hears...

“‘Ohana' means family. Family means nobody gets left behind, or forgotten.” - Lilo and Stitch

If you've known our family at all, you know to some degree how important music is to us.  Not at all hard to see.  It's important in both of our families in different ways.  I've joked when, with Eric's family, we sing the Doxology before a meal, that "Y'know, there really oughta be auditions as part of joining this family!" Thank the Lord I can carry a tune!  It's so much fun to participate in worship like that.  

Anyway, it's not a surprise we want to share that world with our children.  I'd dreamed of having my kids at every concert, enjoying the music, the same way my five-year-old sister used to sit on the podium while I conducted as the drum major my senior year high school.  I just expected that life would be that way.  

In a world where you have to sit really still and quiet, not much ground exists for people who aren't quite capable of this.  I had my own problems in college with learning concert etiquette. I had sung in church and school choirs, been in band, gone to contests and all that mess since the sixth grade, but I knew little about behavior in the pro music world.  So there was I, just a girl from the hills of eastern Oklahoma, completely clueless that people were supposed to make those hilarious faces when they sang!  Did I mention that the school of music at Hardin-Simmons, while I was there for band, is made up of more than 80% vocal music majors?  Did I mention that?  So having to attend a lot of recitals made me learn to bite the insides of my cheeks to keep from giggling.  I had great friends who knew more about this than I did who shepherded me, and elbowed me before the dean had a chance, and I'm still grateful for that.  

But there are things you just don't do.  You don't enter or leave the hall during a movement.  You don't clap till the conductor puts his or her arms down.  You don't talk.  You don't laugh for sure.  You don't make noise at all.  I can remember being at a philharmonic concert in college when, during a most beautiful, soft passage in a long, multi-movement work for full choir and orchestra, a man was hacking his head off.  Not coughing.  Hacking. his. head. off.  The conductor cut off, turned around, dramatically pointed at the man, brushed his hand at the man to show him the door, turned back around, and started the movement over.  

That's the world I was used to.  And I loved it.  I loved the sacredness, the protection of the sheer beauty that was music.  In the before time, when Ryan was a baby and we had no reason to suspect he was at all neurodiverse, we took him to drum corps shows (you really ought to go sometime, by the way), concerts, and even a clinic or two at convention.  

Then he got bigger, the autism showing, and no longer are we terribly welcome in any kind of professional music venue.  

Not gonna lie, it hurts.  On several levels.  

Yes, we play recordings.  Yes, we're teaching him what we can.  But as ol' Dr. Wolz said in music literature at good ol' HSU, "When you listen to a recording of music you're not listening to music; you're listening to *dramatic pause* a RECORDING."  Completely different to hear it in person.  

So you can imagine my ethereal delight in stumbling across this on Pinterest, of all places.  

This is a video of a concert given by the organization Music for Autism.  I cried and cried while I watched it.  I really fell apart when I saw a little boy stimming (hand flapping) in delight as he listened and watched.  The sheer joy in the childrens' faces as they experience live, professional music.  Oh my word.  Living in the rural area in which we do, I figured there was just no chance.  I was so wrong.  One concert in the south, and it's in Houston on April 21.  And get this... they're FREE.  

Can you say "Godsend?" 

I've operated for a long time, giving my musical past away to whatever I needed to be able to be there and be the best wife and mom possible.  And I've agonized over ways to incorporate the music world into our autism-puzzle-piece-colored world, usually only to be left broken-hearted.  Then I saw this and realized... we don't leave family behind.  We're a "You go, we go" kind of family.  Until this concert, I saw no way to incorporate all of us into a professional music setting without leaving someone behind.  We've let great concerts go by at convention, watching our friends' reactions on Facebook and Twitter updates.  We've resigned to the fact that concerts just aren't going to happen for a while, maybe never, maybe with just a kid at a time.  But then we saw this, and now we get our turn!

And Ryan's already excited.  We didn't officially "tell" him, he just overheard and has subsequently asked about fifty times already when he gets to go to a concert.  

He's thrilled.  

And more than thrilled, we're seeing this as yet another way God hears us.  He knows us.  He knows our pain, our desires, and what makes us happy.  It may seem little to someone else, but He knows. 

“In my distress I called upon the LORD; to my God I called. From his temple he heard my voice, and my cry came to his ears." ~2 Samuel 22:7

He hears, He cares, and He loves us! 

Thanks be to God not just for this opportunity... for being who He is, to love us in this way!!!  

Sunday, February 19, 2012

Pink-eyed Blessing

If you know us, you know we've looked forward to these last couple of Sundays for a while.  They're the two Sundays of membership classes for our new church, and while becoming an official part of the church is exciting, gaining the knowledge in the membership classes is, well... nigh on to exhilarating!  No REALLY!  We were both riveted last Sunday afternoon for the whole time, and couldn't wait for this Sunday. We got up this morning all ready to carry out our plan... CE (Christian Education, our Sunday school), church service, run out and grab fast food lunch and bring it back to church, eat, class.  Then, about halfway through getting ready, I got a look at my daughter.

A green, goopy, crusty, near solid awning hovered over her beautiful hazel eye, which was itself beginning to look red.  When you've been around kids at all, you know what that means.  Girlfriend actually loved pink so much that it finally took over her eye, or so I told her.

So no nursery for Maelynn.  No church for mommy.  I was so not happy.  We... um... discussed what in the world to do until we realized that it was time to go like NOW.  We needed to get Ryan and Richie to CE, mainly Ryan, although Richie would be disappointed to not get to play with his friends.  After quite a scramble, we managed to get all our parts into the van and on our way.  I dropped Eric and the boys off, and he took care of farming them to their rooms.  I was worried because Ryan had asked nervously where I was in his own way ("mommy's coming"), but another look in the backseat at my girl, and we had to figure out what to do for her.

Once it was just us chickens, as Nanny used to say, we made our way to a pharmacy on the off chance there would be something there that we could use for her.  I didn't want to wait for the usual urgent care clinic we use, because they opened at one, and our class started at 12:30.  There wasn't, but there was a friendly pharmacist who looked up the other urgent care clinic, which opened at noon.  There's our plan.

So I picked up some lunch the guys could either heat in the microwave or just munch, ran it to the church, then made my way to the urgent care clinic.  By the time I arrived, sister was asleep in her car seat.  About fifteen minutes into our wait in the parking lot, a professionally-dressed, grandfatherly looking gentleman drove up, walked over to the van, and asked if I was waiting to get in the clinic.  Well, yes, we are.

Although they don't open until noon, this man was apparently one of the men who works there, either a doctor or a nurse-practicioner.  After asking if we'd been there before, the man asked how old Maelynn was.  Turns out they don't see anyone under two... and she's two and fifteen days.  These two guys and the one assistant they had worked to make us comfortable and get us in and out of there, completely without feeling rushed.  So yeah, the Treat N Go on Wooded Acres is pretty cool.  We're fans. But that's not the best part.

The best part was that I got to talk to someone with skin on, in front of me, who could look me in the eye, who knew immediately the kinds of exhaustion and frustration we go through without hours and days of listening to us talk about how things are... because he has an ASD child.  He has a twentysomething son with Asperger's.

We shared a few battle stories.

We shared a couple of laughs.

But the best part?  He knows, to a degree, what it's like.

He looked me in the eye, he listened, and said "I get it."

Then he told me something awesome.  Something similar had just been shared by a dear friend of Eric's parents last night, something I didn't even realize I needed, encouragement I wasn't looking for, but needed desperately.  After all the stories of school, teachers, and expectations, he told me what his son is doing now.

Working on his second degree.

He told me how his son's capabilities impressed, changed, TAUGHT, a teacher so much that she went back to school to work with kids like him.

His son changed someone.  I bet his son changed more than one someone.

The LORD will fulfill his purpose for me; your steadfast love, O LORD, endures forever. Do not forsake the work of your hands. ~Psalm 138:8

Yes, sister has pinkeye.  Yes, going to urgent care wasn't what I had planned.  But I left there blessed.

And yes, I did make it to membership class.  I sat outside the door with my pink-eyed girl and listened until she fell asleep, then joined my dear Eric in class.  Loved it just as much as last week if not more.  Ryan did great in CE and church.  Turns out he had his best day EVER today.

Now I'm not thankful that my girl is all itchy-eyed, but I am thankful for how my God used something so no-fun to encourage my socks off.

Thanks be to God, especially when the circumstances look stinky.

Saturday, February 18, 2012

Live from the Bathroom Floor

If you don't want a good, life sized picture of life with Autism in the bathroom, don't read this.  Pop on over to  Pinterest, maybe even close the lid and do something that doesn't involve a screen.

We're having another poop war.  All out, I'm not going and you can't make me, poop war.  It started last night. He never went.  We had to let him to go bed.  He couldn't take it any more and we couldn't either.

Today, we're back at it.  He completely messed his underwear, and to spare you the details, we know he needs to go.  He's done this before.  The question looming over this time is the reason.  Usually it's due to a change in routine.  I don't think there have been any.  I've tried to figure out a reason.  Believe me, I've had time to sit on the bathroom floor and think.

Why the bathroom floor, you ask?

The last time I let him sit on the potty when he was poop-warring, I found poop smeared on the walls.  A new low for us, personally.  I don't think that it's art to him, or necessarily fun... or maybe that's just my desperate attempt to make things okay.  I think it's more "eeew, this is on my fingers... oh look, a wall" and not an attempt at decoration.  But in yet another fit of normality, this morning when this started, I decided I'd be able to work around the corner while he did his thing.  Silly mommy.

So I sit here at the very tippy-tip of my rope, after several failed attempts at bribing my son to just please let it out already, let it out and you can have iPad, vSmile, blahblahblah... and I'd love to say it's all figured out.  But it's not.  I thought surely he'd go before his Daddy left for solo and ensemble contest this morning.  Nope.  I guess I figured typing was better than looking at the mess I have to clean up when he does finally go.  At least Maelynn's asleep and Richie's playing nicely.

When he did this the other night, the only thing that worked was telling him he had to go or he couldn't go to school. If he didn't go to school, he couldn't see B, his therapist after school.  He went.  But not before I completely broke down, tears spilling over and bribes coming through sobs.  I listened to Eric getting the littles ready for bed, the happy sounds of reading stories, and I was struck by the difference.  The difference finally crushed me.  Eventually he went, his daddy gave him a shower.  He even hugged me good night and said, "thank you, mommy."  Then I really lost it.

It's sensory.  It's all somewhere between his sensory-junkie nature and control, and I can't tell when it's coming.  He's been doing so great playing iPad, and now, apparently, he will have to back to small amounts of time, very supervised.  Meaning even less time to spend doing other things... anything... else, including housework, cooking, all the stuff mommies are "supposed to" do.

I'm furious, heartbroken, frustrated, miserable, confused, and exhausted.

I'm having a little bit of a hard time accepting that I'll now be cleaning poop off my walls.

I'm not happy that last night's time with Eric turned to begging and bribing.

I'm mad that today has turned into begging and bribing.

I'm sad that I can tie his shoes, I can help him dress, I can comb his hair, but I cannot make him eat or eliminate.  I can't help with that.  I'm tired of feeling helpless to help him.

I'm hurt for all the other kids and parents that go through this.

I'm tempted to snap and scream at the next person who says, "Oh, that's every kid.  He's just fine."

It's not every kid.

It's one in between 80 and 240, according to the CDC.

Mine is one of them.  Although I'm tempted to tell you to be thankful it's not yours, I won't.  That sounds too much like an insult to my son.  He's precious.  He's smart.  He's funny.  He's loving.  He's a beautiful little guy.  Yes, he has challenges, but he's as God made him.   And I wouldn't insult him or cut him down for the world.

Instead of telling you to be thankful that your child doesn't share Ryan's challenges, if I had to tell you something to be thankful for, I'd tell you the one thing that works for me.

And we know that for those who love God, all things work together for good for those who are called according to his purpose.  ~Romans 8:28

For I know the plans I have for you, says the Lord, plans to prosper and not to harm you, plans to give you a hope and a future.  ~Jeremiah 29:11

Let us hold fast the confession of our hope without wavering, for He who promised us is faithful. ~Hebrews 10:23

This is the truth.  Doesn't take away problems.  Doesn't act as a magic genie to give us what we want and give us all the answers.  And if I told you I smile and shout, "Thank you JESUS!" every time I find poop smeared on the walls, I'd be lying.  But these promises are what I hold onto.  The knowledge that everything works for the good, whether it looks good or not, and his plans for our family are to prosper us and not to harm us, and that he is faithful to keep those promises comforts me.  I'm not in charge, and that is often the only thing that makes this all doable.

Five hours later, the deed is done, the bathroom and the kid are both clean.  We lived through it.  But it's not over.  It's not the last time, and it's likely not the worst either.  He's now happily playing iPad, munching on cheerios with his sister.  I still am not sure how to avoid this, or if anything I do to avoid it will help.  All I know is that it didn't shock God off the throne, and that, in fact, I am not in charge, and boy, am I glad.

Thanks be to God, the maker of heaven and earth, and the calmer of my soul!

Thursday, February 16, 2012


'Tis good for the soul, is it not?

In keeping with that, I have a little one to share.  Okay, it feels huge.

All of you pretty much know by now that I spend an hour a couple of days a week with Richie and Maelynn while we wait on Ryan at therapy.  The littles are great during this time.  People come by and talk to us, say hi to the kids, note how cute they are, that kind of thing.  One nice professorial-type even gave them some play dough yesterday!  We rehearse our Cubbies bible verses, we hang out and color, stick stickers, play with cars, you know, anything we can do rather quietly.  Richie and Maelynn are both all smiles, please, thank you, yes ma'am, no ma'am the whole time.  For real.  They're awesome.  Yes, we have times when they're not as perky as others.  But on the whole they're easy.  It's the beginning and end that are a little shaky.  And here's where confession comes in.

I'm not as cool as Ryan.  I'm not at all fun to follow.

So at the beginning, I can deal with Richie's crushed spirit when Ryan goes into therapy.  It's not fun and it certainly isn't easy, but we get through it.  We snuggle, we talk about what Ryan's *really* doing in there, that he's not playing with toys, he's working hard, and once he realizes this he's golden. Just takes a minute or two.  The other end is where it gets embarrassing.  Here's a bit of what it looks like.

I look at the clock, and at about five till Ryan bops out of the room, I start reminding Richie that he needs to listen to Mommy, not Ryan.  He needs to sit and wait until I've finished talking to B, the therapist, and then we'll all leave together.  That way, I'm thinking, when Ryan runs down the hall, I'm left with just one to chase.

When the door opens, Ryan runs straight to stim on the elevator doors opening.  I try to keep Richie in his seat and be cool, giving Ryan a chance to obey.  Then he runs.  Not sure which way, sometimes up or down the stairwell.  Never to the elevator, because he still has to be carried onto that.  So I go after him, then Richie's three-year-old, brother-worshipping mentality can't withstand the pull.  Got to be like brother.  At one point yesterday, one was running one way and the other running a completely different direction.

Can you say "Mommy fail"?

Part of the problem is that I want Richie to think his brother's great.  But he has to learn that, in order to stay safe and learn to be a productive member of society, he kinda has to obey.  Whether it's us, a boss, a teacher, he has to submit to some kind of authority.  We all do, whether we like it or not.  It's part of civilization.  Part of this is choosing who to follow.  In Richie's case, I want him to love his brother.  I want him to enjoy with, hang out with, share interests with, and share life with his brother.  I do not, however, want him to blindly do what his brother thinks is cool.  Saying a stimmy word with him here and there?  Yeah.  Running after him into traffic?  Notsomuch.

This is where the fertilizer hits the fan.  What do I say?  I don't want to hurt his impression of his brother.  I don't want him to begin thinking that his brother is less than he is, less than we are.  I want him to love his brother, and grow to love others even though they may not operate in his comfort zone.  But the differences are only going to grow in sharper relief, even though Ryan is making leaps and bounds.

Then I realize that it's partially me.  I don't want to label him in my heart.  I know his challenges.  I know the can/can't yet list.  I also know the likely won't list.  And it frightens me.

So where does reality meet Richie's impression of his brother?  I want him to love his brother.  I've told him over and over that I want Ryan to be Ryan, and Richie to be Richie, and Maelynn to be Maelynn.  I don't want two Ryans.  I love Ryan, but I want a Ryan and a Richie.  I don't want two Richies, either.  I want a Ryan and a Richie.  I think the truth doesn't lie in having Richie find worth in his brother.  The answer is in Richie's desire to follow his mother overriding his desire to follow Ryan.

This is where it gets REALLY personal.

Truth is, I don't want to be good, or I would. It's my nature as a human to do the easiest, most fun thing for me.  Yours truly.  It's easier to wallow in my frustration than sit down and iron it out, many times right here.  It comes far easier to reply to my husband with snark than a frank, honest, clean answer when I'm in that mood.  You know, THAT one.  So I have the same trouble as my three and a half year old son.  Following my selfish desire to stay in bed another five  thirty minutes is more appealing than getting a better head start on the day.  Ouch.  Stepped on my own toes, there.  But I get it.  It's so much more fun to run giggling behind his brother than stand all polly-perfect beside mom.  I get it.  But he has to learn to stay beside me, because safety is where Mom is.  I won't lead him into traffic.  I will protect him from danger.  I will guide him in the way that is best, making sure to pick him up when he trips.  When I can, I even point out the fun things.  A squirrel here, a flower there.  Sometimes even something as cool as an airplane, train, a digger, or a helicopter.  Yup, with mom isn't a half-bad place if you look at it right.  It might even be freeing.

Empathy doesn't solve the problem, and it doesn't excuse it.  I will continue the correction and reproof the little guy needs, because hey... I'm gonna give him the car keys in thirteen short years.  He'd better learn to obey the rules now, because it's gonna be a billion times worse to be figuring this out later.  Honestly, if any of you who have ASD kids and younger, impressionable ones have any insight I'm ready for it.  I've tried all I can think of.  The "will you help me" angle only worked for a minute.  And we're going back tomorrow.  I do know one thing... I want him to keep thinking his brother's the bee's-knees.  'Cause I think they all are.

Thanks be to God for it all!!!

Wednesday, February 15, 2012

Ryan's Tired.

So Ryan had a major first last night.  I about fell over.  Never ever before can I recall him expressing himself this way.  It was time to get in the bath, and as I helped him get undressed, he comes out with this shocker:

"I'm tired."

I KNOW!  I told you I about fell over!  After sitting there for a while, mouth agape, I promised him that he could go to bed as soon as his bath was over.

What's the big deal?  Everyone says that.  Everyone complains.  People have finally quit telling me that I'll be sick of him talking when he really gets going.  No, I'm not sick of him talking yet.  I quite enjoy hearing him speak.  It's the screaming that hurts.  I quite enjoy all the echolalic gobbledygook that makes no sense, frankly!  He says things like firetruck siren, number 22, go to the [insert letter or number] elevator, stuff like that.  Random, usually.  And he's begun this while we drive down the road (and sometimes when we're in the house)... every time he sees a "do not enter" sign, he looks at me and says "Do not enter, Mommy!"  To which I reply, "Thanks, baby.  I won't."  But to tell me he's cold/tired/hungry/thirsty/sleepy/angry... nope.  Never.

So I nearly cried when he told me he was tired.

Funny thing about me, maybe it's just me... I have reached the point with this thing where I rarely cry when I'm upset.  Soon as the kids do something awesome, I'm boohooing like crazy.  Sometimes I just look at 'em and I can't stand it.  Other times they say something sweet, like when Richie and Maelynn try so hard to help their brother.

But it's these little things, these little celebrations, that set us apart to a degree.  I'm sure a lot of parents get sick of whining about being tired.  And that's okay!  But to us, it's huge.  Ginormous.  A glimmer of hope in a somewhat frustrating land.

Today, I was sitting outside the therapy room with the littles, and I heard something I hadn't in a while.  Screaming.  Then thumping on the wall.  For some reason, I found out later, a switch flipped and a compliant, happy to try whatever Ryan turned to screaming, head beating, wall-hitting Ryan.  It happens. Everything down to the way you touch him can cause it, but when you've reached that point, you could offer anything and it wouldn't help.  It's like he's fallen through to another dimension, and something there is tormenting him to no end.  You want to reach through the fear, take his hand, and guide him out.  Guide him back to Ryan.  The boy who giggles and snuggles, the boy who lets his little brother fall asleep sharing his pillow so he can watch the iPad while big brother plays.  The boy who tells himself "Mae-mae tickles" when his baby sister touches him, to calm himself so he won't scare her.  I don't know how he gets down to that depth.  I can tell you some of the things that can send him there, but I cannot... and this heartbreaking... I cannot tell you why.  I can tell you some things to avoid, but not all.  Candles, butterflies, flies, washers, dishwashers will send him to hysterics.  Crowds are hard, as is waiting.  We do our best to not completely avoid any of these things.

This is where I start to look around.  This past week, when Ryan was completely apart from together and we were on our way back to the hotel, I kinda went numb.  I saw faces pass by.  I saw a couple of people obviously staring (okay, way more than a couple), and one even appeared to be laughing at him.  The thing that hurts the most is watching my child suffer.  The thing that makes it worse?  The thought that someone, somewhere, is thinking that this is just a kid pitching a fit.  That he has no place here.  That he's bothering them, that this behavior belongs somewhere else.  I know, I know.  I can't spend my whole life worrying about it.  I know it happens.  It's happened to me in the past, and it happens to people I know with kids like Ryan all the time.

The other night, as I scrolled through the ol' Facebook, I came across this...
If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order. If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she sees it everyday. If Dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke. If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how. He may be to big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today. If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple. Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand. No, it’s not bad parenting. Discipline won’t help. This is autism, it’s his life. Don’t judge him, he’s not judging you. ♥

It was posted by our cousin, my husband's if you want to split hairs.  She has a child on the spectrum as well, and we have loved getting to know each other online!  I'm pretty sure it's anonymous, but whoever anonymous is, he or she has my deepest thanks.  This is so "us" it's scary.  What someone else sees or hears as an annoyance is our whole life.  For just a small sliver of time, we all have a choice in this matter as a bystander.  We can make it worse, or we can seek to make it better.  From my experience, at this point, even the most well-meant advice is not helpful.  Chances are we've tried it all at this point, and we just want to get out of there.  Dignity is out the door, and at this point, we wish we were too.  But whether he's on the other side of the wall or in our arms, we still can't help much.  What bystanders are seeing at this point is just the tip of the iceberg.

So what do I do?  It's so not fair!  It's not his fault!  It's not my fault!

Right.  It's not.  And the problem, so often for me, is that I want everyone to know that we are innocent.  We are doing the best we can.  But the truth is that I need my patience and understanding for my son.  I need to remember... I must work at remembering and knowing... that others' opinions of our outward appearance aren't mine to control.  All I can do is perform for the only audience I have.  Do what I can, keep going, do my best, and remember that only I know what I have to deal with.  I can attempt to explain, but only willing ears will listen.  Please don't misunderstand... I love that post and will continue to do my best when I can to educate others about us and folks like us!  But as much as I appreciate what it says, I know that no amount of cleverly-worded sayings or pleas will prevent me from experiencing this kind of hurt.  I will keep sharing them!  I will keep sharing our story!  But I will also promise you that I will continue, and more seriously, working toward worrying about Ryan, his feelings, our family, and of course my audience of one.  

This Journey is My Own
~Sara Groves

When I stand before the Lord, I'll be standing alone. 
This journey is my own. 
Still I want man's advice, 
and I need man's approval, 
but this journey is my own. . 

Why would I want to live for man 
and pay the highest price? 
What would it mean to gain the world, only to lose my life? . 
So much of what I do is to make a good impression. 
This journey is my own. 
So much of what I say is to make myself look better. 
This journey is my own. . 

I have never felt relief like I feel it right now. 
This journey is my own. 
'Cause trying to please the world it was breaking me down, it was breaking me down. . 
Now I live and I breathe for an audience of one, now I live and I breath for an audience of one. 
Now I live and I breathe for an audience of one, 'cause I know this journey is my own. . 

Why would I want to live for man 
and pay the highest price? 
What would it mean to gain the world, only to lose my life? . 
So much of what I do is to make a good impression. 
This journey is my own. 
So much of what I say is to make myself look better. 
This journey is my own. 
You can live for someone else, and it will only bring you pain. I can't even judge myself.
Only the Lord can say, "Well done."

No, I don't know any of those people... I just love this song.  :-)  YouTube rocks!

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