Wednesday, February 27, 2013

Stimming on Stims

When Ryan was a baby, there were times when he held his hand in front of his face and stiffened so much that he shook.  I thought that it was a frustration release... maybe his tiny baby hands just wouldn't do what he wanted.

Then came the hand-flapping.  When he saw something he liked, he pulled his hands up just behind his ears and twitched, kinda waved, his fingers and hands rapidly.  But why in the world would something so adorable be cause for alarm?  We certainly didn't see it as a red flag.  I mean, look at that face.  The glasses so adorable they make puppies look ugly.  Really!  Tell that kid to stop flapping his hands.

It was right about here, however, when his development slowed.  He was a bit of a late walker, but had a handful of phrases at around 8 months!  He said something that sounded like "I love 'em" run all together.  He said it when we gave him those flavored baby puff things to eat.  We even call them "lovems" to this day.  But by the time of this picture, that was all gone.  

He wanted to spend more time with anything that he could make spin.  Eye contact disappeared. 

And the hand-flapping revved with more and more intensity, not to mention frequency.   

When it was first suggested that Ryan was on the autism spectrum, or that he had a Pervasive Developmental Disorder, we found out that he was sensory seeking.  That means what it sounds like.  He seeks sensory input.  He craves it.  I still remember that behavioral therapist from ECI rubbing his legs, arms, feet, and back, and how much Ryan loved him as a result.  

It was then that we were told about stimming.  When Ryan would flap his hands as something spun around, that was this thing called stimming.  To be honest, I didn't really understand it then.  I'm not dead sure I understand now.  But I do know that it is something vital to my boy of very limited meaningful communicative speech.  At seven, he is behind his three year old sister in meaningful communicative speech.  We are miles ahead of where we were and where we could be, but still... if you ask him his name, you will likely not get a response.  

This (still now) dearly loved behavioral therapist suggested several things that we implemented and still use with our children.  He held our hands through the scariest, most heart-wrenching part of the introduction to the idea that our child has autism.  But there is one thing he suggested that we tried for a while and couldn't follow through.  

Ryan doesn't have quiet hands.  

Ryan's hands show his delight at something he loves.  They show his fiercest anger.  They exhibit fascination at an object, excitement to do something he loves.   We have learned, over time and through a desperate desire to know our son, to read his hands.  Sometimes his stimming is accompanied by humming.  Sometimes he pops up on his toes, humming and hand-flapping with delight.  Other times, when his stim becomes more tight, the look on his face more intense, it's time to stop doing what he's doing.  There are things, such as elevators, that being allowed to stim to his delight creates some cross of fear and addiction.  

It looks odd.  It certainly does not look normal!  He sticks out in a crowd for sure when he begins to hand-flap and hum.  There have been times that we have encouraged him to calm, but usually for just that reason.  So he'll be calm.  Not to look normal, not to blend in.  To stay calm.  His new thing is with microwaves.  You can't start the microwave in my house without him barreling to the kitchen to watch, stim, and say "Mom turned on the microwave!"  The line doesn't come at the sight of stimming.  It comes in not indulging him in continuing to start the microwave over and over or hit the button on the elevator just to watch it.  

To attempt to stop his stimming completely would be like trying to teach a dog not to wag its tail.  Instead of, "Wow mom... this is so COOL!" we see flapping.  We hear humming.  

When he was a little guy and I was expecting his sister, I asked if he was excited to meet her.  He had just reached out to my swollen belly to pat it... a definite first.  He immediately hand-flapped hard, and spouted "Save money!  Live better!  Walmart!"  

Then I thought it was just Ryan being his deliciously random self.  Now I know that he was telling me, "yes, mom!  I can't wait!"  

See the hands?  In this picture, he's playing iPad and stimming on a new game.  Notice how shocked and freaked out Richie and Maelynn are NOT.  It's just part of their life.  He's their brother, and they adore him.  They've tried to stim... to hand-flap... just like him, and it's so sweet.  

There's another great shot of him enjoying an iPad game.  As far as the scary parts of autism goes, stimming isn't even on the scale.  At this point, it's beyond adorable most of the time.  In the beginning, it was scary and seemed to be one more thing we were to curb.  It was a part of the overwhelming mass of new stuff to do, to avoid, and to work constantly to get him to stop doing.  

So many of you have asked over the years what this looks like... and here you go.  Maybe someday I'll post a video... or maybe you'll get to see him do it in person.  More likely for some of you, a child in the grocery store or at a movie theater will pop up and start flapping in her own way.  

And now you know what she's doing.  

Thanks be to God for stretching the boundaries of our understanding of everything... right down to the way we communicate!  

Tuesday, February 26, 2013

Happy Belated Providence Day!

It was seven years ago yesterday when my phone rang as I'd just made it home from work.  I drove back before Eric because he had something extra to do.  Usually we'd be together.  But I needed groceries and he needed to stay, so it was decided that we'd ride separately the hour to work.

We were still riding high that his band had just made it to the state contest.  We had both worked so hard, and it seemed the first-year-in-a-new-school roughness was out of the way.  Even with a ginormous pay cut and the risk of teaching with no contract, this was turning out pretty sweet.

As I put away groceries, the phone rang.  Should be Eric on his way home.  Everything seemed to perfect with Ryan coming in just three months!  I was ready to sit down and rest my pregnant back, so the phone call wasn't a problem.

Then I answered.

He told me through sobs to sit down.

"He fired me, honey."

The words seemed too large for my ears.

"I'm to have my office cleaned out by Monday."

But this couldn't be!  He just had so much success.  He was doing what they said they wanted.  We were the victims of what the other employees at the school called "spring cleaning." "Doesn't matter what kind of job you're doing," they told us, "he just likes to be able to do this."

It mattered not that we had given up tons to be able to work there.  The fact that I did a job that I'd never done for a meager pittance didn't matter.  None of it mattered.  We were unwanted, for whatever reason (we think it came down to money in his mind), and that was that.

It was the height of unfairness.  How would we pay for Ryan's birth? Did I still have a job?  How do we make the mortgage payment?  Could I handle working in administration with the very man who hurt my husband in this manner?  So many questions.  So much blinding pain and disappointment.

The next Monday, I did go back to work.  I was asked to meet with the man who just emotionally slaughtered my husband.  He wanted to make himself feel better, I guess... to give me a chance to verbally abuse him a bit in return.  His own pious little penance, I suppose.  As I spoke, calmly and measured, he looked out the window behind me.  He did not care a button for what he had just done to us.  To this day I am thankful that I did not lose my cool with him.

As I made my way back to the sad, dilapidated little rock house that was our office, the ladies I worked with surrounded me with love again, and one of them taught me one of the best lessons I would ever learn.


Yes, celebrate!  Thank God for the way he's already worked this to our good and his glory.  Feel the pain, deal with the pain, but rest in the fact that this did not shock him off the throne.

Out of this lesson, Providence Day was born.  It's our own little holiday.  It's a day we celebrate God's providence in our lives by reminding our children and those who are with us of how much God has brought us through.  In so many times since February 25, 2005, we've looked back and been comforted by our heritage of things survived.  We want our children to have the same comfort.  We want them to be aware of God's care and love for them in this way.

While I still would not thank Mr. H, the headmaster of that private school, for his dark deed, I am thankful.  I am thankful for the lessons learned, not the least of which was to never work without a contract again.  Most of all, I am thankful beyond measure for the lesson that faith thanks God for rescuing us when we're still at the bottom of the pit.

So, a day late, Happy Providence Day!  May you feel the love, grace, and mercy of Christ today as you go about your day.

Thanks be to God!!!

Saturday, February 23, 2013

Toy Story Paradox

This one might be the post that makes all of you question my parenting.  Honestly, it makes me shake my head a bit.  It's one of those topics that, at its mention in a group of moms, prompts a range of spoken and unspoken things such as aired and unaired opinions, guilt, piety, defiance, spouted references to studies, suggestions of techniques and sets of rules, piety, and pride.  Everyone seems to have an opinion.  It's even been suggested that TV causes autism.

Yeah, that was one of my personal favorite studies.  Or not.

Our family takes a rather soft, maybe passive stance on the whole TV issue.  We don't have cable or even local channels, but that's honestly because of budget issues and not moral or ethical issues.  When we did have TV, we still just watched what we wanted, and there wasn't that much that interested us on the channels we could afford, so when we moved we left it off.  Now we pretty much do Netflix with a side of Youtube and iTunes.

I always hesitate to say anything when people start talking about this and that show, because we don't have TV.  We want to avoid being the type of people who stick their noses to the heavens and announce, "Well WE choose NOT to do that."  Reasons for that are a whole other post.  Basically we do what we do, you do what you do.   So know that if you let your kids go nuts watching TV, I have no opinion.  Really.  Do your thing.

Normally, our rules for TV are pretty easy.  Our kids aren't terribly fixated on TV, so it's really not much of a struggle.  Our struggle is more iPad and computer related.  Generally, they can watch a couple PBS shows a day, give or take if they're sick or it's super rainy or cold out.  Feature-length films are for the weekend.  That stems from my belief that you should have to wait for SOMEthing.  If you don't there's nothing to look forward to, and what kind of existence is that?  And let's be honest... leaving the house to go and do things is not exactly relaxing. A lot of the time it's the opposite of fun.

So when I got the flu over Christmas break, the kids got to watch a LOT of TV.  Okay, mostly movies.  I think they watched the Toy Story trilogy every day.  And the mom who isn't terribly worried because her kids seem to like to play more than watch started to worry.

No, I felt horribly guilty.

I allowed my child to watch the same three movies every day.  The rest of the day, we pretty much watched other cartoons.  So the guidelines we did have in place went out the window when the family hit survival mode.  I hung my head about this for a few days, then started to see something amazing.

Ryan was playing with his Potato Head, walking him along, making him say things, mostly quoted lines from the movie.

He sought out other Toy Story related toys we already had, making them his favorite toys.  Toys he previously had no interest in whatsoever suddenly became his favorite.

Why is this amazing?  What is the big deal about a kid finding an old toy?

Ryan got to where he wanted to only play with trains and tracks.  This is not a problem, right?  They're non-violent.  They're something we've bought gradually, so there's plenty.  The problem comes when they begin to frustrate him.  The tracks began to make him angry.  They had to have a finite end, resulting in his trying to move books, even furniture to act as a buffer at the end of the tracks.  Most of the rest of the toys he had were uninteresting.  Well, except for the i-devices.  We were ate a frustrating impasse.  The only toys he wanted to play with maddened him.  The video-game, i-device play had to be limited.  But without that, what does he enjoy?  We had no idea what to do next.  His interests are so very limited.

After a few days of recovery, it began to dawn on me that Toy Story had taught him, albeit by rote, how to pretend.  Well, a somewhat sketchy framework anyway.  The thing is, something that I thought would surely turn his brain to mush was in a way a textbook.  Andy and his playthings gave Ryan a different view on toys... well, a lot of them.

I'm not suggesting that you throw out whatever guidelines you have about television.  I'm not suggesting that Toy Story be used to teach all autistic kids to pretend.  There is still a mile between where Ryan and his interests are and age-appropriate play and socialization is even farther off.

Still, there's something deliciously magical about watching Ryan play with those guys.  His joy when he snuggles Sheriff Woody and drifts off to sleep, as he changes the hat for Mr. Potato Head's, as he chases the dog around the house calling him "Buster".

There's something more amazing yet about the way God uses things that run fully against our grain to accomplish his purpose.

Thanks be to He who knows so much better than I do.

Monday, February 18, 2013

The Way Home

After clearing the hotel room and playing the big game of Tetris that is loading the van, we headed home.  Well, home by way of our semi-annual trip to the outlet mall on the way.

It was not our best shopping trip, but it was definitely not the worst.  We have a few stores we always frequent, and with the added one or two Mom wanted to check out we stayed into the late evening.  The coupons and sales and outlet prices are great for kids who grow quickly and play hard in their clothes, but the process of obtaining these things is a little tiring.  Still, we are grateful for the opportunity.

We plodded around together in a state of controlled chaos, looking quickly and moving on.  I struggle to find the best way to describe shopping with Ryan.  Richie and Maelynn are pretty easy.  They sit in a stroller or walk along side, just running out every now and again, but no more than any other kid.  In the stores where we like to buy the kids' clothes, I try to get Ryan interested in making decisions about t-shirts and the like.  It looks a bit like this, with added chasing of my subject around the store, keeping him out of display windows and off mannequins:

"Ryan, look at this shirt!  It has a monkey playing guitar! Do you like it?"

No response.

"What about this one, buddy?!  It has a pirate thing (skull) wearing headphones!  You love headphones!  What about this one?"


"Look at this one, buddy.  It has Perry!"

"CURSE YOU, PERRY THE PATAPAAAAS!!!"  His newest "thing" is for Perry the Platypus. So that's a big "Yes please!"

I ask about a pair of shoes that is deeply discounted that would be the ideal successors to his current shoes, and I get what I think is a soft, whispery, "I like the black shoes." But I'm not sure, so I ask again.

"YAYA DISNEY STORE!" He tightens his soft, still baby chubby fingers into a fist and wails on his head.

Guess I asked one too many times.

The kids know we always go to the Disney store last.  Usually, the little stuffies are on sale and they each pick one, then we go happily with our treasures to the nearest Cracker Barrel to celebrate.  Last time was magical.  So easy.  Yes, we had a few moments, but on the whole it was lovely.  This time wasn't terrible, but it wasn't what I'd call easy.

But then, easy is a matter of perspective.

There were times we had to force ourselves to stay calm and convince him we had to keep going.  Then there were super sweet, precious times that we wouldn't trade.

And that pretty much sums up the trip.

As we finished dinner, the boy who can gobble a hamburger in just a few minutes... the same one who violently, emphatically refuses to hold my hand... said simply "sleepy" and made his way to my lap.  He ended up with his head and shoulders in my lap and his legs stretching across his own chair at the table, feet touching the wall.  And he fell fast asleep.

So often, in a kindhearted manner, folks tell us that we're special.  We're special parents, given a special child.  And to that I will always smile and be grateful, for the heart behind it is certainly kind and giving.  The only thing is that we're not special.  If we are, then so are you, and let's not forget that Richie and Maelynn are special, too.  They're just as special as their brother.  I have a hard time singling us or any other family out and deeming it/them super special.  We certainly did nothing to earn our three kids, just as autism, Richie's allergies, Maelynn's bout with the flu, or ear infections or anything else like that are most definitely not God's punishment for something we did.

It's just what God had in store for us.  I have no idea why, and that's truly okay because we choose to trust that he knows what he's doing and can see the way the rest of our stories play out.  Yes, I can tell you great things we've learned.  Yes, I can honestly say I would not want to be the person I was in the before time if that meant giving up all the knowledge and wisdom we've gained through dealing with the things we deal with on a daily basis.  But no, I cannot say honestly that the struggles that come with autism are a reward for good behavior.

If you saw us in front of the Alamo the other day... if you had seen the desperate tears falling from my tightly shut eyes in a last-ditch attempt to focus... if you had seen Ryan's confusion and utter lack of ability to control the need to hit and scream... unable to overcome his disdain of holding hands to keep himself safe... you might say that our patience is amazing.  You might think it's too hard to watch, or you might think how sad it is that we have no control over our child.  But you wouldn't think it was a gift.

If you saw me with that big seven year old boy draped over my lap, exhausted, giving me a rare chance to stroke his hair and kiss his cheeks as much as I want... or if you could see him giggling as he talks about his beloved Toy Story friends in words we've learned to decipher... you would definitely not see autism as a curse or a burden.

It's all in your perspective.

Thanks be to God for caring hearts, three wonderful children, and providence to believe in. 

Friday, February 15, 2013

Tales of TMEA Vol. 3: A Little Bit of Morning

It's been a busy day, and we're about to head out to the Baylor college reunion, something that happens here every Friday night at TMEA.  Mine (HSU) is happening too, but we went to that one last year.  But before I head out for the next hour or more, I have to tell you how great the last twenty-four have been.

Our evening was great.  Valentine's day pizza in the room, followed by the little boxes of chocolates Granny got for the kids.  Ryan even ate one, and Maelynn was her mama's daughter.  I had to stop her from shoving them in her mouth whole!  Then there was this sweetness...

That precious young man, this morning, walked with his Daddy, his Granny, his brother and sister, and I to the convention center to get badges for mother and I.  I wish I could explain how crazy this is.  We did manage to skip as many crowds as possible, and in the convention center with the day in full swing, convention goers clogging the way, he did famously.  After we had what mother and I needed, Ryan asked to "see the band." 

There was no band close, but he heard the tons of people trying out instruments in the exhibit hall and had to see.  So we took a deep breath, jumped in, and agreed to make it short.  To set him up for success.  

Honestly, we needed the success.  

All was well!  We made a long loop through the overwhelming immersion of sound and light and color that is the exhibit hall, then walked back.  NOT A PROBLEM.  

I was dreading leaving the hotel room, much less walking all the way to the convention center, through the thickest part of the foot traffic, and waiting in line for our badges.  But we had to be present to receive family badges, and Eric had to be with us.  Rules are rules.  

Soon as Eric and the kids were tucked safely into the hotel room with plenty to play with, watch, and do, Mom and I left for the convention center.  

I wish I had time to tell you about every conversation.  I wish I could replay them, because as everything else, these are God-granted blessings, and they are sweet.  Many hugs, many stories, numerous smiles and encouragements.  

In other words, just what I needed. 

When we got back, I quickly took the reins and relieved Eric so that he could make his next clinic.  I sat with mother by the window while all three (yes, all three) of the kids rested.  

God gives us what we need.  

The thing is, it's not always what we want.  And it's not always something we knew we wanted.  And sometimes the thing we need is hard.  But just when I think I can't go on doing things the way they're falling, there is a reprieve.  A respite.  I don't see it coming, necessarily.  And maybe that's best.  

It's time to get my shoes back on and sneak out of the room without waking the kids.  It's Eric's turn, and with mother here to watch the kids sleep it's easy.  But I must tell you... it's true what they say.  The darkest night is just before the dawn.  

Maybe that's why it's so hard to see the light. 

Here's something that has been stuck in my head today.  I guess because today I could see the little bit of morning outside.  

Thanks be to God!  

Thursday, February 14, 2013

Tales of TMEA, vol. 3

Normal is an illusion.  After all, what is normal for the spider is chaos for the fly. ~Morticia Addams

I'm beginning to seriously question my sanity.  Who is it, after all, who said that doing the same thing over and over and expecting a different result each time is the definition of insanity?  Okay, maybe I'm being too hard on myself.  But over and over, I insist on coming to TMEA... well, we look forward to and quite agree to my coming down here and bringing the kids.

It's cramped in the hotel room. It's scary to walk the streets of downtown San Antonio with a little boy who, to put it lightly, does not like to hold hands.  The bigger problem is that he isn't afraid of traffic.  Candles, yes.  Birds, he's not excited about.  But traffic?  Meh.

Take last night.  Dinner was great, although we had to hurry a bit.  We took Mother, who's with us this time, to our newest favorite place on the riverwalk.  Not as touristy as a lot of the places, and we've had some fun there.  I mean, how many times have you seen someone serenaded by live Mariachi in an Irish pub?  And the corned beef and cabbage is the stuff of dreams. So is the lamb stew.  Actually, their kids' chicken rocks too, because the first words out of Maelynn's mouth this morning were, "That chicken was weeawy good wast night, Mama!"

After a fabulous dinner, we walked back to the famed blue elevator in the Hyatt, then left daddy to help with the ATSSB All-State chair auditions and walked back to the hotel ourselves.


We hit the street to cross in front of the Alamo, not a block from where we left daddy, and Ryan violently refused to hold my hand.  Or stop for traffic.

Things escalated to Mother sitting with Richie and Maelynn while I tried desperately to stay calm, keep him from hitting himself, talk him out of screaming, and shut out the world that swirled around us.  Nothing worked.  Not the new stuff we learned from school, not the old stuff, not first/then, nothing.  Just a swirling torrent of fists and anger and screaming.  I almost had to sit on him to keep him from running into traffic.

For a while, I was doing well. Speaking calmly, doing my best to be the lighthouse in his storm.  But somewhere along the line, waves of frustrated exhaustion and heartbreak crashed over my heart and brimmed my eyes, spilling down my cheeks.  My voice warbled.  No longer cool and calm, no longer together, I kept repeating the only things I know that work.

First calm down, then hotel.

Yes calm down.  Yes hotel.

Eyes clamped tight to avoid the stares, I tried to hug him and love him and not just keep him from hurting himself.

I don't know if it was right.  I don't know what you would do, or what experts would do.  I can make guesses at why he melted down, and they're probably pretty accurate.  But as for answers?  Real answers that can make it possible to walk down the street hand in hand with the kids, pointing at this and that, saying yes to ice cream and no to the silly rides or even yes to both?

Not afforded to us.  I don't know why.  And honestly, why isn't important anymore.  "Why" pours fuel on anger's pilot light of the already scarred heart.  Not that it's bad to ask why.  But at this time in my life, with this stuff, I need an anchor more than I need a cloud of questions.

We did make it back to the hotel by the grace of God.

The littles even got to pet some horses on the way, still looking for that one who was named "Mae" a couple of years ago.

I still can't overcome the hurt of the autism thing.  It's still the little things I wanted to do with him that are really big things.  All the things I took for granted that we'd do.  Telling myself that what I want doesn't matter and that all that matters is learning to love him the way he needs to be loved does just that... it makes sure I'm doing all I can to make sure he feels loved.  And that is huge!  The thing that bothers me is the pushing of the idea that autism moms... or this one, anyway... are tireless.  I know it's meant to be a compliment, but...

I guarantee you, we are tired.

I can also guarantee you, at least in my case, that the exhaustion isn't from Ryan.  It's from watching him suffer.

It's wanting to share things with him, and share him with others, but it's just so hard.

So we keep trying.  Over and over.  And yes, we expect... we pray... for a different result.

But so far, it's more of the same.  Playing with the thermostat in the hotel room.  Begging and being quite insistent that he wants to go for a walk, but still lacking the social skills and danger intuition to make it very far.

So maybe I should admit I'm a bit nuts?  Okay, sure.  But it's like a rollercoaster... on the bottom and the freefall kills, but the tops of the hills are amazing even though they're close together.

This is how we roll in the mornings.  Mickey Mouse Clubhouse on the ol'Macbook, Cheerios, and whatever else Mama brings from the breakfast buffet.  

Much pretend play... which is quite new, praise God... in his favorite place in every hotel room.  He pulls up a chair and stays pretty much the whole time.  

Isn't Zurg cute in Mr. Potato Head's black derby?  And check out Mr. Potato Head in Woody's hat.  All Ryan's doing.  

And happy Valentine's Day shots for Daddy, who's off working hard today in the convention, soaking up information like a great band director.  

That would be extreme cheese.  That's my Richie roo! 

As much energy as it takes to quiet my panic and remember, this is our normal. As different as it is from what I wanted it to be, it is what it is.  Here's the trick I'm learning somewhat slowly... the sadness and longing I have for what I thought doesn't mean I'm a bad mama.  It means that I'm human.  In this case, it means I love my friends and what I used to do, and it's okay to want to share that world with the kids.  

While I was working on this post, Eric sent me a text with a picture of friends in the ATSSB meeting, waving at me via photo.  Everyone was napping, and I choked up as I sent a hello text back.  Maybe someday, if we keep trying, I can introduce the world to Ryan.  

Until then (and even if it never happens), we will hang on to the great things that happen, to the giggles and smiles, to the wonder and amazement for a moment that we all shared looking at lights on the river last night.  And we will try again, no matter how crazy it is.  

Thanks be to God for all of it, no matter how strange it looks. 

Tuesday, February 12, 2013

The Flipside of Grateful

This will be pretty embarrassing and telling, so where do I begin?

Last week, I received a call from school.

No, not THAT kind of call!  His pants were clean, he was happy, and things were just as they should be.  Honestly, that last thing prompted the call.  We've been sailing rough waters in the house lately.  It seems like since Christmas break or so, we've lost.

Everything seemed to cause a meltdown.  Get up, meet him in the bathroom, and the first thing out of his mouth is a defiant, loud, "NO SCHOOL".  Even answered in calmer tones, the truth wasn't so much denied but somewhat, although inwardly directed, violently shoved away.  Enter the hitting, the screaming, the crying.  Even the mention that he should do something prompted this response.

In the past, getting back to school was the answer.  He was tired of the wild card that can be home.  When you thrive on routine, having a four year old brother and a three year old sister can get a bit unnerving.  Add to that the random things mom and dad decide we think would be fun, crazy amounts of celebrations and routine changes, and there you have it.  The perfect storm.

But the going back to school wasn't helping.  For about three weeks or more, the best term I can use is "hairy."  Lots of redoing how they and we did things, trying to figure out a way to help him cope.  They've had some success, so the resource teacher called to see if I could meet her to talk about how great he's done this week, and to share what she's been doing that she thinks could translate to home.

In the process, I'm learning that it's important that I cope, too.  Let's back up a bit.

These pictures were all taken on Ryan's first day of school.  While I was in the hospital having his brother, a week after Ryan turned three, the school diagnostician called and invited Ryan to summer school.  Isn't he tiny?!  

What you can't see is the hormonal, post-op mess taking the pictures.  I hobbled around in my not-even-a-week post-op, just had a baby stupor, trying desperately to make this the first day of school I always dreamed our kids would have.  Pictures and being accompanied by the whole family were the best I could do.  

Honestly, I didn't hope much would change.  I mean yes, I was grateful for him to have the opportunity.  Yes, I was thankful that we had a district that cared to start him early.  But to tell the truth, I sat and held Richie and cried.  I wanted so badly to be able to help him myself.  

When Eric picked Ryan up that first day of ESY (extended school year is what they call it here), he didn't say much.  Didn't look at me.  Just the usual Ryan.  Then my mother put him in his booster, and I asked what he'd like for lunch.  

He jabbered!!!!!  He said something unintelligible, but he TRIED TO SPEAK!!!!!!

We were elated, but at the same time, there was a part of me that hurt.  I couldn't do it.  I couldn't reach him all by myself.  In just three short hours, strangers had inspired him to try to speak when I couldn't get him to point to a picture of what he wanted. 

Ever since, that same feeling rises when someone can help him do something that I can't.  I know it might be weird to admit to something that sounds so, well... ungrateful... but it's the truth.  I am thankful for and supportive of his teachers, therapists, aids, and everyone who works with and for him.  I jump up and down at his achievements. Eric and I do our best to implement what happens at school at home, and wherever we go, but to tell the truth, it's sometimes still hard to accept that someone else can get through to and figure out my child better than I can at times.  

Somewhere in all this lies one of the secret lessons I've learned during my stay in autism land.  Maybe more than one.  I do know that I am grateful for every one of the things that has been taught to him... and us... by the myriad of therapists and teachers we've had over the years.  While I'm grateful for all those lessons, I'm secretly even more thankful for the experiences that sanded the chip off my shoulder.  

The chip that said, "Mama ALWAYS knows best."  Yeah, that's not always true.  Sometimes this mama needs to have a bit more open mind about how to do things.  

The chip that didn't want to listen when people told me it wasn't my fault.  After all, he was with me every day, and in my mind, his breakthrough the first day of summer school was further proof that I was on the wall in the terrible mothers' hall of shame.  I may not be the world's best, and I surely make mistakes, but I'm not the worst mother in the world. 

The prideful block that I (hopefully secretly) wore that said, "I stay home with my child, and he will therefore be above average at everything he attempts, and will walk into preschool prepared to teach the teacher."  Oh, what a wicked thought! 

And now the one that I'm still learning.  Ready?  It's earth-shattering!  It's changed and continues to change the way I look at everything from church involvement to volunteer work to my housework to Christ's love for me.  

I'm human.  

That's all.  Incapable of doing everything, fallible, tired, flighty, and weak-minded.  In need of grace.  In desperate need of mercy and love and forgiveness.  I mean, who is rejoicing at her son's accomplishments and secretly wishing it could have been her who thought of the key?  

Thanks be to God for grace and mercy, and the revealing of the meaning of these gradually... for if I had to take it all in at once, I would surely crumble.  

And thanks to the Lord for all you teachers, therapists, and aids out there who have worked so hard for our baby boy.  

Monday, February 11, 2013

Disney Consideration

While we cleaned a few things from the closet today, I found a box of photo albums and scrapbooks that managed to hide since we moved.  Among them was the Disney scrapbook from our trip when Ryan turned two.  Since we're planning another trip this time next year with the band, we just had to look.  Here are a few of the treasures we found... 

Mommy and Ryan waiting to get into the Monsters, INC show. 
 Just look at that, will ya?  Such a cute baby face.  And wow, no crow's feet on mommy.  Crazy!

Waiting for our band in the parade at Magic Kingdom!  So very hot, and a special band mom and I poured water in his tray and on is feet as his own personal wading pool.  

So many memories.  We only had one child, and things looked so easy and joyful!  The band rode buses, but we flew, just Ryan and I.  I remember being so overjoyed that I could take my son to do such a wonderful thing!  

One of my favorite memories is of Ryan's affinity for the fountains in the Winnie the Pooh part of the magic Kingdom.   

Okay, just the one. 

What you're seeing is as high as the water rose.  I think this one might have been a bit broken, but Ryan was fascinated.  He played with it for over and hour. 

He was enthralled with that little water spout!  

There was this little girl who was so concerned for him.  She came over and tried to convince him to come to one of the other spouts that shot about three or four feet. 

When she couldn't convince him to move to another fountain, she tried with all her little girl might to make that fountain more fun for him.  She held her fingers over the fountain in hopes that the water would shoot higher.  Nothing doing!  He was happy just the way it was.  

The attraction was designed to stop the water a bit, then have it start again suddenly.  Of course, that added to the joy!  Here he is trying to get the water to hit his sweet baby belly...

Fast forward a week, and we're in Galveston on a family vacation hearing for the first time someone else's concern that he didn't talk.  Fixated on things.  Wasn't responding to his name.  

He just seemed behind. 

Two months later, we had our first visit from ECI, ruling out a hearing deficit.  

A month into that, and we heard the word autism referring to our boy for the first time.  

It's been a long, at times terrifying, at times exhilarating, road.  Now we're planning another Disney trip.  Still a year away, it's amazing the difference.  There is a world of difference in the planning this time.  Add two more kids and a few years through the autism wringer, and we barely recognize ourselves.  

Now it's not all cute sippy cups, cereal bars, and cheerios.  And instead of working the pain into words, I'm going to tell you this:   I'm glad we had that innocent time of sippy cups, cereal bars, and cheerios.  I'm glad we had that time.  I'm thankful for it.  

I'm also inexplicably grateful for the little man who, as he addressed his valentines tonight, spouted with the most delicious awkward confidence, "I'm a joy!", then flapped his hands and went back to writing his and his classmates' names.  

Indeed you are, sweet one.  Indeed you are.  

Thanks be to God for every bump, curve, gut-wrenching climb and butterfly-inducing freefall of the road, for you've used them to shape not only our view of each other, but of You. 

Wednesday, February 6, 2013

The Unlearning

"No! Only different in your own mind.  You must unlearn what you have learned."  ~Yoda, "The Empire Strikes Back"

Crossing off each day until I could leave for college, I knew I was going to make something of myself. There was a definite drive... a dream... that compelled me.  There was something out there for me to do, and I had found it.  There would be no stopping, not even for a family.  Nope, not me.  I'd head on through college, marry, and keep right on working.  Juggling kids and a marriage and work couldn't be that hard when you love your job that much.  

I can honestly say there was no way I could entertain even the thought that band would not... or might not... be life.  

For a long time, this was easily the truth.  Then there was the day, when I hadn't yet been married for a year, that I got in my friend's car to go from campus to campus as we always did, and she told me something through tears that started a change.  

Now I must add that she has three boys and is a great band director and a great mom.  She and her husband have given the world three wonderful additions to society, and she works hard and does a fabulous job.  But that day, God used her words to start a paradigm shift.  

What I live every day today is not what I had in mind then.  It's not even remotely close to what I would have called normal, or what I would call it if pushed into a corner to do so even now.  There are times when what I do every day, in one fleeting moment, meets who I was then.  Sometimes I even wonder if I'll ever go back there.  Then I look in these eyes... or have a moment like this... and I know.  

I'll never go back.  I'll never be the same.  

See, what you can't see in that picture is years of speech, occupational therapy, ABA, and good old fashioned hard work and prayer.  What you can't see is the hours around the table of ARD meetings and other types of meetings with experts picking apart every aspect of my child's behavior and every little way we deal with it.  

You can see that he's pretending something.  But what you can't see is our devastation at being told that he doesn't pretend.  What you can't feel is the heartbreak of listening, wanting to defend him, but watching him obsessively banging a cabinet door and knowing deep down that they're right. 

What you can't hear is the beautiful sound of his happy speaking voice saying, "Baby rides the pony!" and "Ride like the wind, pony!"  What you can't see is the frustration of limited communication.  The pain of watching your precious child injure himself because he can't handle the situation, whatever it is.  

What you can't see is the trouble he has transitioning from one activity to the other.  

What you can't see... and something I couldn't begin to put into words... is the amount of stuff we've turned upside down to help him.  

No, to find him.  

What you also can't see is that, in our search for Ryan, we found that we aren't who we thought.  

We found, in a sense, us.  

We found, in those huge, blue eyes, our need for mercy, grace, hope, and love. 

Just this morning I was thinking about how weird it feels to call myself a special needs mom.  It still feels strange.  And there are times when what we do, how we handle things, and why we do the things we do and leave out the things we leave out seems so... well, it seems different.  Abnormal.  

But it's not.  Not for us!

It's different looking from the outside in.  But from our perspective, we have learned through what feels like a meat grinder of the heart and mind first that we had to unlearn.  Then we had to learn, still struggling all the while to remember that we have to first unlearn.  And there are still times just about every day when the different seems so prevalent, and I just want a minute of normal... but eventually, I remember the deliciousness of living and enjoying and finding peace in where you are and who God made you to be.  

And it's in those moments that I thank the Lord for the unlearning, hard though it is.  

Thanks be to God for his plan and providence. 

Monday, February 4, 2013

To My Dearest Birthday Princess

Dear Maelynn Elaine,

Wow. You're three. At lunch today, I couldn't believe it's been three years since I sat in the same restaurant on the way home from the hospital. You were so tiny, snuggled into your car seat.

Now, you're a bundle of sweetness with a side of spunk who love to wear, breathe, eat, and sleep pink and tulle and fluffy frills, all while playing with trains and dump trucks. That's when you're not talking your brothers into playing Minnie's bow-tique or house or with your colorful ponies.

Three years ago, you came out bright-eyed and asking who's in charge, and not much has changed.

You're my little hot mess...

My pretty princess...

Such a sweet, kind, thoughtful little lady you are, asking me just last night after I hit my head picking you up, "Oh, are you okay honey?"  

You've always loved doing things just like me and just like Daddy.

And now you're three.  

We had such a wonderful day with you!  Words fail to describe my joy every day to see you bounding from your room, ready to play.  From your biggest grin to your angriest pout, you're the most beautiful little girl I've ever seen.  

Often I daydream about what you'll be.  I sometimes catch myself trying to draw a blueprint of who I hope you'll be, but I always stop myself.  All the dreams, hopes, and wishes I have for you simply cannot begin to compare with the story the Lord has written for you.  

So, my dear, I pray that you will grow in the grace and love of Christ.  I pray that God will give you a hunger for his word and that you will be compelled to seek him and love others.  Whoever you grow to be, I thank God for you and for the gift of being your mother. 

Thanks be to God for your every breath, all the way from your first cry... which I was so grateful to be able to hear... and for everything that makes you my sweet Maelynn Elaine. 

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