Monday, April 30, 2012


I've had a rather eventful 24 hours or so.  In a good way, and a different way... I hate to use "bad" just because it's so extreme and uses such a broad stroke.  We'll start with the good stuff.

We've known for a while now that Ryan is getting to the age where he'll lose baby teeth.  For me, I can remember the first few times being a bit scary.  Once I had one loose but not ready and one that was ready  but I was scared to pull it.  Not a fan of pain and blood... especially not bloody pain.  So I wouldn't let Mama touch it.

I had just turned six.  Nanny and Grandad came in from Heavener to OKC to help us move into a much better apartment.  As a treat to their (at the time) only grandkid, they took Mama and I to Frontier City.  I wanted to ride the bumper cars. Like a big girl, thank you very much.  They tried to talk me out of doing it by myself.  Tried to convince me to let Grandad ride with me.  Nothing doing!  I'm a big girl, I'll ride like one.

Here's where I have to say that my Mama was great at letting me make decisions, then helping me with the consequences of said decisions.  I wasn't in harm's way (not really) and I was tall enough by the ride standards.

Anyway, I was on the bumper cars in big-girl bliss for all of thirty seconds before *BAM*... of course, I got hit.  Head-on.  Immediately I was removed from the ride because as my face hit the steering wheel, it knocked out my two front teeth.

Fast forward nearly thirty years, and I'm doing my best to explain to Ryan (when it comes to mind) that his teeth will get loose and fall out, that it won't hurt, all that good stuff.  But we were still worried.  We can't measure what's in his head.  Unlike me, he's not just hearing and being stubborn, he might really not understand.  We were honestly dreading it with every fiber of our being.  We were afraid he'd swallow it. Choke.  Get scared and traumatized at the the blood and, well, his tooth FALLING OUT OF HIS HEAD!  AACK!

Last night as I was working on a nightgown for Maelynn, I hear from the back room Ryan come to his Daddy at the kitchen table and say matter of factly "It's broken."  Eric immediately assumed he'd broken something (as did I) until Ryan held out his hand.  A little front lower tooth lay in his puffy little boy hand.  His face had a bit of a bloody shmeer on it, but it did not upset him at all!!!  I can't help but think all that talk made it through, and he trusted us that it was all okay.

After some quick rejoicing and picture-taking, we went about our Sunday night.  He'd been melting down about wanting to go outside, but both Eric and I had things we needed to do inside, and it was getting late.

The rest of the evening went off pretty easy other than the occasional fuss, but we're used to fussing.  This morning, soon as I got Ryan off to school in his snuggle-toothed glory, I began laundry.  It looked cloudy, and I really wanted to get diapers washed and dried on the line before it began to rain.  So after the diapers washed, I headed outside with the kids.  Richie and Mae were being so sweet.  I've learned to enjoy hanging the diapers out by letting the littles play, and when I'm through I'll often mess around in the yard or play with them.  This time, I was almost ready to hang the last diaper when I noticed a tiny branch of a rather large weedish, brushy thing that was blocking part of where I needed the last diaper cover to hang.

I could have taken a minute to get the proper tool.  I could have taken a minute to remember what I learned about these things from my Dad, Grandad, Mom, Nanny...  even the Food Network for cryin' out loud... but no.  I pulled out my pocket knife, held the branch, and cut TOWARD me, slashing the underside of my upper left forearm pretty deep.

So I spent the whole morning in the small emergency room here in town, getting my four stitches.  Yeah, just four.  And I will admit my chickenness; I will even show you my feathers and say that yes, I puked after looking to see if I needed stitches.  Eric left school after I called and said "I need stitches" and came to pick me up and take me to get sewn up.  The guy did a good job, so did the nurses, and thanks to lidocaine I didn't feel a thing.   But I have to say it doesn't feel good.

The thing that feels the worst is the fact that I knew better.  I'd had it explained to me multiple times in my life, I knew what to do.  But in my haste I ignored conventional wisdom and did by-golly what I wanted.  Even worse?  I do that all the time.  I know what God requires of me; I've studied the word enough to have a good idea of how I'm supposed to be.  But for some reason (see Genesis 2 for the reason) I can't stop doing things I know aren't meant for my good, the good of my relationships, and even my own heart.  I like to think I'm among the first one to praise God's sovereignty, and the need to trust that He knows best.

And yet I still ignore what I know to be true and blast through things in my own bull-headed way.

I know this could have been much, much worse.  I could have made it to the layer of muscle (yay for fat for once in my life), I could have cut tendons, nerves, and could have wound up losing function of my hand for a while or even for good.  I'm thankful for a host of things this morning, including but not limited to Eric being able to come and take me to ER, ER doc and nurses who were kind and compassionate, and hey... even that I threw up at home instead of on the ER folks or in the van!

Now to learn to trust like my amazing seven year old, who blew us all away in the way he handled losing his first tooth.  I'm proud of you, buddy.  Even more than you realize, and not just for the tooth.  For trusting us and inspiring me every day to trust God more.

And if you'll excuse me, said lidocaine is wearing off and I need to stop typing!

Thanks be to God.

Thursday, April 26, 2012


Does this need to be said?

Does this need to be said by me?

Does this need to be said by me right now?

I'll be honest.  I've thrown away words.  I've thrown out things that I shouldn't have said, repeated, or even thought.  I will not tell you I've always been kind, thoughtful, or nice.  But I can tell you that the older I get, the more simple things get.  And at the same time, they get more complicated.

I know, right?  Confusing.

One of the ginormous lessons that being a special needs family is teaching us is the power and importance of words.  How every little one does matter, no matter who hears it.  No matter if you say it out loud.  And the more I live, the bigger the picture of holding every thought captive to be a true reflection of the gospel... the love of Christ, the love of God for us that He gave Christ.

But there are throwaway words, right?  What if I didn't mean it?  I just said it.  Everybody says it! Get off me!  Stop being so sensitive!


This morning there was a post on Facebook by someone I know who recently adopted a beautiful baby boy.  Let me add, this boy will likely always have a way darker tan than she does.  Someone actually told her that they can use that ugly, hurtful, hate-filled name for people with that skin color because they have a friend of that race.

Really now?!

So I couldn't help but bring up the "R" word, since that's hurtful to us.  No, we don't hole up and cry because someone throws it around in conversation, but we notice it.  We don't de-friend people because they use it, either.  I'm not suggesting that you just drop anyone, or that I'd drop you, as a friend because you use that R word.  But what I am saying is that we should check our hearts before we speak.

What is the heart behind what I'm saying?  Am I tempted by embarrassed anger to defend what I'm saying simply because I want to... or I can't take it back?  Oh, I so long to always check my heart in this manner before I speak.  And we (I am always included in these...) should check our hearts and tempers before we make an attempt to improve someone else.  That's essentially what we do when we judge.  Here, let me get that speck out of your eye.  There you go!  Isn't that better?

Then we turn around and, in the process, smack them with the plank sticking out of our own eye.

This is why you'll rarely see me slam someone (I hope).  I know that for every judgement call I make on someone else, there are at least ten they could make on me.  There are times when we are called to take a stand, a nice firm stand, but we have to remember that our wrath... our judgement... our anger... does not produce what we're going for.

So if you use the R word, I'll likely just act like I didn't notice.  But if you ever ask if it bothers me to have that word thrown about like "the", I'll tell you that yeah, it does.  Even as an outdated diagnosis.  The way it bothers me the most is when it's used to hurt others, make fun of others, or as a way to say something is stupid.  It bothers me the same way the short bus jokes do. And you want to honestly know why?

That's because the day came when I was loading my little boy into the short bus to go to a special education class.

I didn't see it coming.

I do understand that there are people who honestly have never thought about it.  That's why I don't "go off" or just judge people's hearts by the use of one word.  No man can judge another man's heart.  And so often it's just a lack of realization.

Another good reason to go to and start sharing your story.

It can't hurt, and it won't cost you any money... just a little time.

Thanks be to God for growing, learning, guidance, and understanding.

Wednesday, April 25, 2012


There are several of you who have told me how amazed you are that we put out our ugliest, hardest moments along with our best.  Never in a bad way, just always a little surprised that we (and yes, that's WE... if Eric ever said enough, that would stand) almost advertise what life around here is like.  Eventually, most of you wonderful folks who take time to read this message in a bottle completely understand... or at least partly.

It's a message in a bottle.

It's a call out from a worn-out heart who, at one time recently, wondered if anyone anywhere would get it other than our closest friends and family.  Or even try.  Or even care to try.  It's for all of you who are on this gut-churning roller coaster called life with a child with autism.  It's for all of you who know that part of that is the amazing highs from the simplest things to the lowest of lows, almost in an instant.  It's for the mama who shuts the windows and the doors in an attempt to shut out the hurt.

The stares.

The comments.

The lack of acceptance.

It's for all you daddies and mamas who just don't know if you will ever have a new friend again (you will).

It's for all of you frustrated with the level or care you're able to provide.

It's for you who just got the diagnosis... or hint of a diagnosis... and are googling your sweet, broken heart out in a desperate attempt to grasp ahold of some understanding.  Be encouraged... that ugly label is actually a ticket to better understanding of your child.

It's to hold out a hand.

A hope.

Some understanding.

The same understanding I searched frantically for every day last year, when Ryan hit that magic age of five.  Everything changed, no one understood.  Even those who were nice mostly just didn't want to help us face it.  But just making us feel better doesn't help, does it.  The attempts are appreciated, but we're still left with that burning in our chest that says no, it's not okay.  I have to work every day to make it okay.  If I don't keep working on this and improving my understanding then what will become of him?

It's also because I need to share our story.  I need to make sense of some things.  Which is what brings me to this... writing is cathartic.

I kinda need it.

So many of you out there have great stories.  Amazing folks with amazing kids who maybe don't have autism, but something else challenging.  Medically, emotionally, physically, mentally... the list goes on.  Share your story.

It may seem simple, but it's important.  The more people share, the less alone we feel.  The more people share, the more people read, and the more awareness we raise.

Because this isn't just about a kid with autism and his family.  It's about caring, loving, and empathy.  It's about kindness, goodness, faithfulness, gentleness, and self control.  It's about love, peace, and patience.  It's definitely about faith.  God made these kids with a purpose.  But don't forget... he made you with a purpose, too.  

Whether you come here for empathy and understanding or for a peek into our world, you have a purpose. You are here for a reason, and you can change something.  The way you look at something, the way you deal with one thing today.  A smile can really make a difference.  An ear can make an even bigger one.

Whatever you came to this site for, whatever lead you here, I thank God for you... and I urge you to share your story.

And now I'm going to attempt to be on time for Ryan's therapy.

Tuesday, April 24, 2012

The Concert Trip

For the post (some of) you have been waiting for...

On Friday, we took a trip to Houston.  Our only destinations were the hotel, which was AWESOME, and the Music for Autism concert at the Westview School.  If you know us, you know we live on one income, and that's a teacher's salary.  We're happy as clams, but have to be careful.  But this concert was too great of an opportunity.  Very worthy of sacrifice!

We had some frequent flyer miles to burn, so we slapped 'em on a nice hotel, because the last time we booked a hotel, we wound up with people walking into our room at 2:45 in the morning because when the not-so-gracious clerk gave us a second room she forgot to tell the ol' computer which room she gave us.  What was wrong with the first room?  Um, let's just say it was so gross I told the kids they gave us the wrong one and we walked out.  Moving on...

We only made one stop on the way down because the kids were happy or asleep for most of the trip.  Weather was pretty ugly, and despite some icky directions from a certain website, we made it to the hotel just in time for the bottom to fall out.

When we were sure we wouldn't blow away, we went to the indoor pool for a swim.  The kids were thrilled with this privilege!  Our little fishes played in the water and we went with them between the "bubble pool" (whirlpool) and the big pool for at least an hour.  Then we went upstairs, where Mommy and Daddy donned our super-capes again and ordered our family's favorite thing ever... PIZZA!  The kids watched Cars 2, we ate, and went to bed at a pretty decent hour.

Next morning, we got up, went downstairs for breakfast, put the fishes back in the water for a while, then went back upstairs to pack and leave for the concert and for good.

This is where things got a little rough.

If you know Ryan, you know he loves the hotel.  Any hotel, really.  Just the idea of it, for some reason, gets him all giddy and jumpy-stimmy.  He asks at least five times a day... not kidding... when we will go to the hotel again.  We kept telling him, when he asked for his beloved Blue Elevator,  that we get to see that in July.  He made up his own date, too... "You will go to the Blue Elevator on July fiftiieff!" he says, and we either agree or explain.  We had to look up the date of the TBA convention so we'd know what day.  Because he's gonna keep asking.

So when it was time to leave, he was upset because he knows the luggage cart means goodbye, hotel.  So that meant hello, scream for the hotel, beat your chest and ears, and cry.


He did get in the van, although getting him there was a bit like putting a mad cat in a pillowcase.  And just as noisy.  We made our way to the school for the concert with the littles snoozing.  It was, after all, nap time.

Arriving early, we were the first vehicle in the lot.  We waited and let the littles get as much nap as they could, with Ryan just itching to get out.  I'd promised drumsticks.  I'd promised drums.

Now, here is where I have to confess.  The Music for Autism concerts are set up very well, and are incredibly well-geared to kids with autism, as well as you can gear to a group so widely diverse.  There is first a time for the musicians to perform, then a time for the kids to conduct in a way, and then a time for percussion, when they hand out instruments to all the children to play along.  The whole thing was very loose yet structured, calm, and there were even noise canceling headphones if you needed them.  Anything past this is no reflection on concert preparation, the people running it, the school, nothing.  Just me being all silly again.

First off, I should not have promised drumsticks.  I shouldn't have mentioned them.  I should have left them at home.  It seems so simple, but that was the first thing he melted down over.  While my littles and the rest of the kids were in awe of the fabulous music coming from the instruments of such talented musicians, Ryan screamed and cried for drumsticks.  Then he screamed and cried for a drum.  He saw where they were kept at the back of the room, and being the little ninja stealth child he is, I spent the entire concert keeping him away from them.  He went from the thermostat to the drums across the room, not exactly being quiet and happy in between.

I was so confused, granted not as confused as he was, because I know I was supposed to let go and let him enjoy the music how he wanted.  But in no way was anyone else going to be able to hear the music if I let him do what he wanted!  He ran around drumming with his sticks on the headphones that were meant to block sound!  Arrrgh!

Then Richie started to cry with Ryan.  Then because he didn't want a drum, rainstick, or tambourine.  The n because he DID want an instrument, and it was time to put them away.  He cried and generally was in a fit until we got in the van.

Maelynn, on the other hand, was an absolute doll, running around dancing and playing with the other children.

We left frustrated; two of us in tears, and mommy and daddy close.

The ride home was long.  Lots of talking.  Lots of brainstorming.  Kicking ourselves a bit.

Okay, a lot.

See, there were both things I knew to do and things I didn't.  There were so many ways we could have set Ryan up for success better.  It seemed like all the other kids in the room... these were by and large mostly autistic kids in some way or another... were better behaved and perfectly happy to be there.

On the way out, one of the ladies who worked the event told me that we ought to go visit this and that for the kids while we're here.  Holding back tears, I croaked out with a plastic smile, "oh, we're on our way home."  Which, of course, we were.  In the van, back to good ol' GBT.  I actually said, in my utter broken frustration, "Well, it's official.  We can't go ANYWHERE."  Then I lost it.

We cannot be the only people who would drive 3 1/2 hours to take our child to something like this, but they all looked at us like we had lobsters crawling out our ears when we told them where we were from and that yes, this is what we came to Houston for.  They were nice, but they were shocked.

So what will we do differently next time?  Well, I guess I should say, we will go again.  We will try at least one more time because of how much Ryan and the rest of our family love music.

We will save and only go if we can stay Friday and Saturday nights in the hotel.  Period.

We will let go of our training and let the kids be, knowing that the musicians are trained for this.

We will NOT bring the drumsticks.

We will social story wisely, with a story written by us, taken from cues from the one on the Music for Autism website.  We will add things like "no sticks or mallets" that pertain specifically to our little guy.

We will make said social story on the iPad, so he'll actually read and comprehend it.  Okay, so he'll be interested in it at all.

But above all, we will remember that we are a chosen family, and that even in a crowd of kids with similar disabilities, we are still different.  We are still unique, and unique isn't bad or stupid or embarrassing... it's just that.  It's unique.

We will take what we learned this weekend and, thanking God for it, apply what we learned to every other trip we ever take.

We will give each other grace and mercy when things get rough.  The hurts are deep, the feelings are strong, and we have to bear with one another in love.  That's God's design, and the inventor usually knows how things work best.

We will always... ALWAYS... be thankful for the opportunities we have, for they are numerous and undeserved!

And as usual, our thanks be to God, the giver of all good things!

Monday, April 23, 2012


There are about a billion things jockeying for position in my head this morning, all of which bear translation into blog-form... but the one that prevails isn't what I thought it would be.  I didn't see it coming.  It hit me broad-side, completely blind.  Going into this weekend, I thought I'd come back on Monday with a review of the Music for Autism Concert we attended this weekend.

Instead, I'm struck by how much autism affects us.  I'm struck by how it infiltrates every little thing we do.   I'm shocked by how much and how little we do to adapt to Ryan's needs all at the same time.  It's such a tricky thing.  You can't take time to pat yourself on the back, because while you're patting, things change. There's always something else to learn.  As large and incredibly diverse as the world is in all its social settings and even everyday situations are, autism magnifies them a thousand times.

I'm also struck... bowled over... by how much I have to learn about who Ryan is and how his mind works.  And I'm frustrated at the same time by the lack of a way to learn these things other than trial and error.

I'm amazed at our younger kids.  I'm amazed and encouraged, and at the same time broken-hearted for how much they adore their brother.  How they copy what he does.  When we stopped to eat on the way home this weekend, Ryan drummed with his crayons on his cup lid.  So did Richie and Maelynn.  I've had to tell Richie that hitting isn't a great way to express anger (in Richie-friendly terms)... but that's the way Ryan does things.  Ryan's everything is golden.

I'm in awe of the way God sandwiches frustration of learning the hard way between two thick slices of wonderful, knowing that I'd have trouble swallowing.

Today I feel absolutely sucker-punched by autism.

At the same time, I am thankful for the revelations we had this weekend about how we need to do things.

I'm thankful for the ways the Lord has blessed us that serve to bind up the broken heart that comes with the sucker punch.

I'm thankful for the tears of learning, and for the marriage relationship that is able to share tears, and for the mutual wiping of tears that follows.

I'm thankful for the hearts of my littles.

I'm thankful for the amazing smiles of all my children.  For the twinkling sound of their laughter in the dark, frustrating valley of night that is so often life.

I'm thankful for the people who have shown their unshockability in dealing with Ryan's behaviors this weekend.

What brought all this to light?  The Sunday after the Saturday after the Friday of learning and celebrating our family.  You'll hear about the Friday and Saturday later, but the Sunday is more important.  We turned Ryan's life on its head this weekend, both by giving him something he wanted and taking him out of routine.  As a result of so much different-ness, Ryan's Sunday was off.  As I rounded the corned to pick him up from CE, the unmistakable strains of the meltdown song stabbed my ears.

He loves CE.  He loves his teachers and helpers.  But it was all just too different, and that just happens sometimes.  We can't help that, no one can.  One of his teachers was doing her best to help him, and had taken him next door to Richie's classroom to cool off... literally... it was pretty warm in his room.

But meltdowns are life.  We know this.  What's the big deal?

As I picked up a crying, screaming, red Ryan, I saw his biggest fan behind him.

He was crying.  He was so worried about Ryan.  He was broken-hearted for his dear pal Ryan.

As the dutch door shut between us, Richie's little fingers clung to the top in an attempt to reach his hurting hero, weeping in desperation. I touched his hands, looked in his aching blue eyes, and promised I'd take care of Ryan.  The gentle offer of play-doh and a loving hand from his teacher caused Richie to reluctantly turn and go back to class.

I carried Ryan and a giant lump in my throat to worship.

Honestly, I'm not sure which was heavier.

Then I was reminded of Psalm 147:2-4.

"The LORD builds up Jerusalem;
  he gathers the outcasts of Israel.
He heals the brokenhearted
  and binds up their wounds.
He determines the number of the stars,
  he gives to all of them their names. "

He sees our tears.  He knows our hurts.  He gives us ways to learn, he heals the scars when the learning is hard.

Thanks be to God a thousand times over.  May we never cease to be thankful, no matter what the circumstances.

Thursday, April 19, 2012

The Wheels on the Van

Yesterday, about 2:30, outside the therapy room:

Richie: Oh no! I hear Ryan screaming, Mommy!

Me: I know, sweetie.

Maelynn: Help him stop?

Richie: Ryan's hitting the walls.

Me: Yes, baby. I know.  He must be working hard today.

Richie, with a proud sparkle in his eye: "I bet he chewed and swallowed, mommy!"

Tuesday we had our annual ARD meeting.  This, if you're new to this alphabet soup we call education descriptors in Texas, is the meeting where everyone with anything to do with Ryan (mostly) is present, presents what they do for him, what they think he needs, and how we should proceed from here.  We learned a ton, and this time we shared a ton.  Call me crazy, but I actually told the ARD committee that this whole thing makes me want to throw up.

Every. Time. We. Go.

We thought, talked through, prayed, and were as prepared as we'd ever been.  There is so much that needs to be addressed with a child like Ryan, and we did feel like egos were out of the way for this one.  That said, we do tend to try and think the best of people.  We listened and were happy with what he's getting, because honestly, it's way more than we could pay for.  But this time, instead of listening and absorbing and keeping my mouth shut, I found the words to say what I needed to say.

How did I get through so many years without having to speak up and stand for anything?  Grace of God. That's all I can say.  Just to be clear, Ryan has not been mistreated to my knowledge.  We feel like the teachers (especially his), and generally the rest of the folks who deal with Ryan truly care for him and his welfare.  Not just that but giving him a shot at real life... you know, the best shot he can get.  As close as they can get to the same every other kid gets.

This time, though, I felt like maybe they weren't quite aware of Ryan's need to be guided.  You know, kept safe, out of harm's way.  For example, the ladies who stand out where Ryan gets into school know him, they know me, and they do a great job.  They are great at coaxing him out of the van in a caring, sweet, joyful way.  But of course, that's not part of what the ARD is about.  The state doesn't have paperwork to reflect that Ryan stims on the wheels of vehicles and will walk into them, coming at him, completely unaware of the danger.  But I made sure, this time, that they knew, and bragged on these ladies.  At the same time, I needed to know what to do when these ladies aren't there, because everyone misses every now and again.

No one on the committee, except his teacher, knew Ryan did that.

Thankfully, they listened, admitting they didn't know and likely should.

Then you look over to the table behind the meeting where Richie and Maelynn are playing.  Our principal noted, after playing with them during part of the meeting while she listened (and she did), that they are so smart and sweet, they know all their colors and numbers, and Maelynn was using some pretty advanced phrases for a two year old.  Again, by the grace of God.

At one point, the principal encouraged our parenting, which was sweet, but as she said something about that, Maelynn said "It's all my fault."

Calling attention to her, I noted what she said, and followed with a reminder that these kids see battle.  They see frustration.  They see what may or may not look to them like favoritism on our part.  They see their brother in such a disturbed, scared, angry state that he can do nothing but hit and scream, turn red, and sweat.

They see us at the end of ourselves.

I do not know where Maelynn got that phrase.  Some one, some time, some where said that and it stuck.  She says it when it doesn't make sense, mostly.  Just a two year old showing off some awesome speech skills. But no matter when she says it, those words from her precious little face break my heart. You know what else?  I don't think it hurts to give them a look into our... into Ryan's... world.  They're at times making decisions that could affect him, and although they can't hold all the cards, they need as many as they can get.  I'm sure you noticed that the littles were in the meeting.  Why would I do that?

For all the reasons we just discussed.  It can't hurt for everyone to see their faces.  To hear how they love their "pal Ryan".  After all, they see the problems.  They might as well hear the solutions.  In the sea of paperwork that is an ARD meeting, and is so often life in a public school, I'm a firm believer in faces.  Having a face to put with a name not only helps us remember important things, it also can push us to see the problems we didn't know existed.  It's not enough that the people working with him know... it's good for the administrators to hear what all goes into the school day, and those people who make sure your child is safe?  I'm all about giving praise where it's due.  And folks, coming out in the rain to keep Ryan from walking under the wheels of the van is praise-worthy!

They can't see into our house.  They can't see into our hearts.  So we'll take that hour or two, once a year, to push as much of Niagara Falls as we can through a drinking straw.  If you have an ARD coming up, don't be afraid.  Take courage, friend.  Your child needs you to speak for him.  To show them the full rainbow of who he is, from the worst moments to the heart-melters.  If there was ever anyone who was worthy of standing up and calling a spade a spade, it's the little man who fell into my chest and whispered "I love you" between chest-pounding, screaming sessions this morning before school.

Thanks be to God.

Tuesday, April 17, 2012

ARD Day in the Camelot?

Last night, while visiting with my Mom, somehow the conversation stumbled on an old hotel in Tulsa.  The Camelot was built to resemble a castle, complete with turrets and a moat.  Though I never entered the building, it was close to my heart just the same.  As a six through about nine year old girl, I was traded between my parents about two to three times a year in a restaurant next door.  Always awkward, the trade included what seemed like hours of painfully shallow small talk between my parents and my stepmother, sometimes including me, but usually not.  The funny part is that we never actually ate... no one could afford to back then.  We just sat there.  I didn't want to leave my mother in the first place, and being with them often proved terrifying rather than fun.  So as they visited, I let my mind wander about what the inside of that building held.  It must be such a wonderful place!  How could someplace so beautiful and creative on the outside not be amazing on the inside?

Eeh, bummer.  Mom said they finally knocked that magnificent place down.  She was sad, too.  I can see it like it was yesterday.  I'm pretty sure that even then. in the early to mid-eighties, it was out of use.  The pool was always this murky, icky color, and I don't recall seeing anyone enter or leave. Once Mom and I got off the phone, I googled it.  Good news!  I'm not the only kid who thought that place was special.  Someone else actually said they dreamed that there must be a sleeping princess who'd wake and the Camelot would magically be restored to its former glory.  I want to hug that person!

In an odd way, this blog is the same sort of place as where I found my old friend, the Camelot.  Someone out there is having a rough time.  Someone out there doesn't know what to do next, thinks there's no one who gets it, and maybe there really isn't where they can see someone.  And you know what else?  Something that you dreamed of your whole life isn't at all what you thought it would be.  It isn't even like everyone else's seems to be.  Parenting a special needs child really is different.  It really is harder.

No, I'm not saying that parents with typically-abled children don't have problems or difficulties.  But I am saying that they wouldn't use words like "special" and there wouldn't be separate classes and even schools for kids like mine if there wasn't something different.  Harder.  This morning, shortly after getting a very encouraging call, I read one of my favorite mommy-autism-bloggers, Diary of A Mom.  Her post was all about telling it like it is.  Not sugar-coating what we go through, not over-dramatizing it, either, but giving a true picture of where we live.  Too often I find myself putting up a nice front, so that, like my dear friend the Camelot, people will see my neat, thoughtful architecture and not see the mess that resides behind the facade.  I actually witnessed, rather recently, a mother so apologetic for her special needs son's presence that it pierced my heart.  In an attempt to make the person who was supposed to be there to help her son comfortable, she completely threw his needs under the bus.  "I'd rather ruin his day than yours" she threw out flippantly, with him standing right there.  

"He can hear you..."  I thought.  I was hurt for the child.  Then it hit me.

That's me.  Quicker to apologize and save face than explain.  More apt to lay down than stand up.  And in the process of making others feel comfortable, I throw my dear little man, who can't stand up for or explain for himself, right under the bus.

Please understand, I'm not advocating the practice of completely cutting loose and tearing into people, not caring who you hurt, as long as your/your child's needs are met.  That's the other end of the chain.  I've taught, my husband still teaches.  I've been shaking and crying after a parent pulled me out of class, screaming at me in the middle of the hall because I held her daughter to the rules.  She didn't accomplish anything.  Her daughter still didn't go on the trip.  She just made a reputation for herself as someone who had zero self control.  We want to be the type of parents who take care of the problems, but who are also approachable.  Honestly, the latter is easier for us.

So what happened to the girl who didn't want to leave her mama but went anyway, scared and softly crying in the backseat, careful not to make a sound because she didn't want to hurt anyone's feelings?  She's having to learn take a stand in a caring, thoughtful, wise way.  She's still not good at it.  But now it's her little boy, and she can no longer just take all the pain, internalize it, and keep pedaling with a smile plastered on her face.

The thing is, I don't want to lose or completely cover up the little girl in me who cares so deeply for others.  On the contrary, I want that caring of others so translate to finding a way to wisely and intelligently stand for our boy, knowing that if we don't, no one else will.

The thing about the Camelot is that so many people owned the poor old place at so many different times, each thinking they'd fix it... and of all those people, some incredibly wealthy and powerful, no one stood for the place, placing time and energy and cost to restore and care for it.  Without care, it withered away. Vagrants called it home for a while, vandals and usual amounts of decay took their toll until it was no longer safe for humans to inhabit.  Once grand and beautiful with so much potential, now it's a faint memory in the minds and hearts of those of us fortunate enough to have seen it.

At 1:45 today, we will stand up and graciously take ownership of our son's education again.  He will grow in grace and truth.  He will be treated as the beautiful, amazing treasure that he is.  He will be given an opportunity to reach his potential with his whole family cheering him on.  We are so proud of how far he's come!  He's amazing... he's incredible... because every day, he gets up and faces a world that he doesn't understand.  The world frightens him in so many ways.  It's so unpredictable.  So loud.  So bright.  So confusing.  He's been entrusted to us.  And we will do everything we can to make sure we're his voice, and that he's not just maintained but encouraged to grow and become who God made him to be.  Because he's sure not going to be neglected.  Not on my watch.

Thanks be to God, who loves us and gives us what we need, when we need it.

Sunday, April 15, 2012

I want to, but I can't.

So we did the Waco Walk for Autism today, and I just can't decide what I want to tell you about.  There's so much, and there's so little time this evening, with sleepy, freshly-bathed kids smelling of cowabunga coconut (or whatever their latest soap is) finally dreaming in their beds.  There are so many things that the Heart of Texas Autism Network does to communicate and put on the walk, and we're grateful for the tons of hard work that go into the planning of such an event.

I want to tell you how great it was to see that.

I want to tell you... to pour, mold, and shape into words the reason I choke up and can barely hold tears when I walk into this event, and any other event where so many put in so much work to support and celebrate us and families like us.

I want to tell you how great it was to see so many groups from Baylor and Waco and beyond who recognize the need to support and celebrate these amazing kids.

I want to show you the pictures in my mind of each family, some with the t-shirts I just couldn't make time to put together but so wish I had, saying things like "Johnny's Crew" and "I'm an important piece in Johnny's puzzle".

I want you to see the mother with a little boy about Richie's age, wearing a cape made of multicolored puzzle-piece fabric, with a Superman-shaped "S" on the back.  His family was all around him, clearly proud of him.

I want to tell you of how many teen-types were there, wearing shirts proclaiming their pride in their brother or sister.

I want to tell you how incredibly proud of one special young lady (we'll call her J) I am for giving up her Sunday to celebrate Ryan with us.

I want to tell you how proud I was of our little Maelynn, running around, charming everyone she met!  How she ran around to each booth, talking to all the helpers and kids, playing all the games (or at the very least giving it her all), and how beautiful she was.

I want to tell you how Richie, though he was tired, did his best to show his pride in his Pal Ryan.  How he batted his little eyes at the sorority girls hosting the booths, and finally succumbed to exhaustion and sat in the stroller for a bit.

I want to tell you how Ryan was Ryan.  How he had a hard time adjusting, just wanted to go back to the elevator in the parking garage, and how he did have a couple of meltdowns but they were short-lived.

I want to tell you how amazing J was at helping out with he and the other kids.

I want to tell you how proud I am to be married to a man who is proud to walk with his family at this event, taking pictures of the kids having a great time, and having a great time himself.

I want to tell you how amazing it was when Ryan finally calmed down and started having fun at the booths... how precious and heart-melting it was to see him run, giggling, over the grass of the fountain mall.

I want to tell you about all the super-woman mamas and super-man daddies I saw today.  How I saw them in action, and all at once wanted to hug them, high five them, pat them on the back, and tell them how great it is to see them... but I didn't, of course.  Because I know there's no time for small talk when your ASD child is loose someplace.

I want to tell you how thankful I was to walk around the one time we made it around with Ryan on my shoulders.  How I realized that, for all he overcomes just to come to the dinner table, much less to be at this event, do school, and life in general... I really think he deserves to be carried around.

I want to tell you how neat it was, when I walked by with my nearly seven year old boy on my shoulders, the singer of the band that was there interrupted the start of his next song to look at me, get my attention, and say "Your road's gettin' longer, isn't it!" Why yes... yes, it is... thanks for noticing.  And for being here, Leon River Band! 

I want to tell you how grateful I am to gather more information about organizations we might be able to use for bettering Ryan's life and our understanding of him.

I want to tell you how quickly it went by.

But since time's fun when you're having flies, as my college band director used to say, I feel compelled to tell you only this... that when Ryan got out of the bath, he started singing in his own little way, bits and pieces of this:

I know, buddy.  I know it's not easy.  But you do such a great job of bein' Ryan.  We are so proud of you, little buddy.  We're going to keep doing everything we can for you, because we know that God made you fearfully and wonderfully.

Thanks be to God.

Wednesday, April 11, 2012

Hang on tight

I totally do not have time for this.  My hair's a mess and I have to be somewhere at nine... but before I forget, I have to tell you... Ryan had an out of town field trip yesterday.  Yes, the day after the major meltdown, horrible day to the point of coming home early... yes, that yesterday.

We sang along with Elmo's Song the whole way to school, and I felt that same heart-sickness.  I knew he'd have an aid.  But I didn't know anything about the concert he was going to attend other than what I saw on the website.  I learned a long time ago that I can't go.  He has a horrendous time if I go.  Much better if I don't.  So I have to let go of wanting to be the mommy who's there all the time so he'll have a great time, even though he'll never tell me about it.

And he didn't.

He got home safely.  When he got in the van, he had a broken chain of purple beads with stars, and the sweet lady who helped him in the van (she's been around him since the first days in school) smiled and said she didn't know where he got them, but he's not letting them go.  "Guess they're his now!"

I asked if he had a good day.


"Didja go to a concert today, buddy?"


"Well, I'm glad you're home.  It's good to see you, punkin."

At home, I saw that he had a happy face/sad face on his conduct place for the day.  It takes a lot for his teacher to put a sad face, so I'm thinking that he had a great time on the bus and when they got back to school, he was likely not happy to be there.

He is verbal.  Sorta.  He can speak.  He can certainly speak more than nonverbal people.  He can communicate a lot of things, but just to help you understand, he usually communicates less effectively than his two year old sister.  The happy times in the van, singing with the Sesame Street CD, he struggles to get the words out.  They usually are not intelligible except to those who know the song or really know Ryan.  We are grateful for the words he has, but it's hard not to grieve for the words and communication he doesn't have.  Without leading questions, we usually can't even discern if he's in pain.  Then usually we don't know where.  We feel along, and if he has a fever, he goes to the doctor.

He did tell me "burger" on the way to school today.  I asked if he wanted a burger for dinner tonight, and he said "burger" again.  As he slowly climbed out of the van, i showered him with the same things as usual.  What he can expect from this afternoon (Ms. B), have a good day, love you, bye-bye, that kind of thing.  Sometimes he looks at me, but usually he shuts the van door, stims a bit, runs to the no-parking sign on the brick support next to the drop-off area and reads it to the lady who helps him out of the van and to the door.  Okay, so she keeps him from getting run over by my van.

I'm proud of him... I'm proud of Richie and Maelynn, who brought him his shoes without being asked this morning.

Who say "bye, pal Ryan!" when he gets out of the van.

Who love him even though he ignores them, and at times treats them like toys.

Who go with him to therapy, even insisting that he have a hug and kiss before he goes in.

The same kids who cry because they don't understand why Ryan gets to go in the room with all the nice toys while they sit in the hall with whatever mom brought to entertain.

And Ryan, the same kid who will put a pillow on his brother's head on the couch and nearly jump on it if I don't watch, will beg for Richie and Mae-Mae when they're not around.

I've even caught him hugging both of them a few times.  He's even let Richie fall asleep right by him before.

Yep, I don't have time to do this, but I'm proud of my kids.  And as we seek the next step in helping... raising... accessing Ryan, I have to hang on to that... and even tighter, to this:

11  For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. ~Jeremiah 29:11

Yes, my boy is fearfully and wonderfully made, and before he was formed God knew who he would be.  I will seek, I will do my best for him.  And at the end of the day, when I know I've done what I can, I will rest in the promises of our Father.  I just had to tell you that... before I got crazy busy with the insanity that is Wednesday for the Senzigs... and I forgot. 

Thanks be to God!

Monday, April 9, 2012

Lights, please

There is a feeling like the clenching of a fist
There is a hunger in the center of the chest
There is a passage through the darkness and the mist
And though the body sleeps, the heart will never rest... 
...shed a little light, o Lord, so that we can see!  
Just a little light, o Lord... 
~James Taylor

Here I sit again, in need of light.  

Here I sit, in need of direction.  Not purpose, you understand.  I have purpose.  And not a "why are we here," cosmic, meaning of life direction.  

I just need to see the next step.  

I need just enough of a glow that I can know how far to stretch in anticipation of a foothold. 

Emptying the dryer and folding clothes.  Ah, my not favorite but definitely not worst task.  We'll save that title for cleaning the inside of car windows.  I was enjoying a day of being home and doing just normal mommy things when the phone rang.  

I could hear him in the background.  To tell the truth, I could barely hear his teacher over his screams. 

For the first time all year, Ryan had to be picked up.  His teacher exhausted everything she knew to do for him, and the offer for whoever has him always stands... if he's too upset, you're getting too frustrated or he's completely taken over the classroom with noise and meltdown, call me.  I'll do whatever you need, from advice to just taking him home.  She's called several times to keep us updated, but this time he just needed to go home.  We're grateful that she listened, that she knew what he (and she, for that matter) could take. 

The whole time I waited for Eric, who was on his lunch break, to bring Ryan home, I had that all-too-familiar feeling of dread mixed with fear.  That kind that causes you to brace yourself.  I grew up with that gut-level kind of terror, and never thought in a million years that my child would be the one to prompt it.  I picked up the trains, made sure the iPad was out of sight, put the dogs outside, and generally did my best to grease his way into the house.  Minimized annoyances that could be triggers into a continuation of his meltdown behaviors at home. 

From what I could hear and what everyone said, this sounded like a true meltdown.  Completely out of control emotional reaction to *something*.   The only thing I can think is that he's so distraught that we left Grammy and Grampy's and that life is back to normal that he's frustrated and angry.  Without the words to express this, he spins out of control. To clear up a common misconception, verbal does not equal perfect communication skills, and it certainly does not equal nonautistic.  It does not equal Asperger's either.  No one can understand the complexity of diagnosing someone with an ASD until you've done it or lived through it.  We're talking years here, people.  Hours of observation, tons of paperwork by everyone involved, and way more waiting than is considered fun. Moving on...

By the time he got home, Ryan was sweaty and tired.  He was relatively calm, and he's been relatively calm since.  The thing that I can't get over is this feeling that we need to do more.  He needs more.  We need more help understanding him.  We don't know what to do, other than keep him safe.  We're certainly not rewarding this behavior.  He's not playing iPad or watching movies.  He is playing with his brother... well, side by side with his brother.  Okay, Richie is playing beside Ryan, who also happens to be stimming on this and that as he pulls random things off the floor.  The toybox beside the television is empty; Ryan dumped it because he was bored, and I guess because he enjoys the feeling or sound of that action.  

But I'm terribly frustrated for him.  He was so happy this morning.  He ate his breakfast, brushed his teeth, even sang along in his own Ryan way with the Sesame Street CD this morning the whole way to school.  WHAT HAPPENED that threw him off course?  What happened that upset him to the point of screaming and pounding himself?  When asked, there is no answer.  He was so disturbed, Eric said, that he fell into his daddy begging for mommy.  Once at home, he really hasn't paid much attention to me.  He actually chilled on the couch for quite a while, seemingly honoring my request to please let his brother and sister sleep.  For whatever reason I received this mercy, I am grateful for it.

Every day I do mommy things.  Every mommy things, like refilling sippy cups, cleaning sticky hands, kissing freshly-wiped faces and dirty knees, refereeing fur-flying scuffles, emptying the dishwasher, cleaning who knows what off of (usually) Richie's chair at the table.  I clean poop out of carpet and off of dolls when someone feels a bit exploratory.  I drag them to the doctor when they're sick, let them get dirty, and clean them when they're through.  I let them feel sad, angry, and frustrated, and do my best to guide them to share their feelings, then equally do my best to guide them to hope and remind them of joy.  But, as I shared with Eric's Mom this weekend, the level of inadequacy I exhibit and the lack of things we do for Ryan grieves my soul.  

Jumping on the couch I can handle.  Throwing in the house?  No problem.  Both of these and a host of other behaviors in my two littles I can handle.  Don't do it.  Easy answer.  

But what do you say to a child who pounds himself with his fists, screaming until his whole body turns red?  What do you do when that same child can't tell you what's bothering him?  

Don't know?  

Me neither.  And it scares the bajeebers out of me.  

I don't know what the future holds, either.  But I do know Who holds the future.  And I know that I'm going to love my kids, all of them, no matter what their trials, no matter how noisy they are, no matter how sticky to the touch or ungrateful they may act.  All for the simple fact that they are ours; entrusted to our care, each one fearfully and wonderfully made as the first.  Each one special and beautiful in their own way, and flawed in their own way just as I am.   I may not know right this minute what the next step is, but there is one, and I know from experience that when I step out, even if I'm too numb to know I'm stepping, the next step will come.  

As the sweet, late Lucy's Daddy says, "God is always good, and we are in His hands."  

Thanks be to God, the builder of the next step.

Saturday, April 7, 2012

People Train Meets Real Easter

We're enjoying some time at our vacation spot of choice this weekend.  No, not a timeshare or an amusement park... we're at Grammy and Grampy's.  Having been blessed with sweet, loving people for in-laws, yes, it's really fun for me, too.  Ryan, Richie, and Maelynn adore their grandparents.  When we're here there are several little things the kids enjoy, but the one that they really look forward to is the people train... otherwise known as the DART train, the commuter rail transportation in the Dallas area.

I have to admit I enjoy it, too.  It's fun to people watch, and I just like riding the train.  Then there's the fun of watching the kids' sheer delight in waiting on the platform, watching the buildings go by, the changing of the people with every stop, and of course, the stop to get ice cream as we wait for the train to go back.

The flipside of this (you know there's always a flipside) is that Ryan's social skills don't exactly include gratefulness.  Or tact.  So for the week since we were here for a short time to attend a special wedding last weekend, Ryan has been consistently demanding the people train.  It goes a little somethin' like this:

Ryan: Do you want to go on the people train?

Mommy: We're planning on that this weekend.

Ryan: You WILL go on the people train!

Mommy: Ryan, we are talking about when we'll go.  Be sweet and don't demand it, okay?


About this time, you can insert smacking of the chest, head, legs floor... whatever's handy, and screaming and crying.

All I want to do is give my boy a gift.  All we want is for him to enjoy himself.   Ryan's grandparents are more than willing to do whatever we think is best, and they share our desire to give the kids something cool to do.  This time, though, I almost didn't think it was a good idea to take him.  Sometime he has to learn thankfulness, gratitude, and the art of graciously accepting a gift... not to mention graciously waiting to see if you get that gift.  Gratitude and yelling over and over while hitting yourself and demanding something just don't go hand in hand in my mind.  As I type this, he sits snuggled in tight to me in the oversized chair while the littles nap, saying "you WILL go on the people train!" every now and again.

We want all our kids, and we want to, live in a way that shows gratitude for everything.  There are so many things, situations, and people in our lives for which/whom we are so blessed.  We don't want to live so wrapped up in what we don't have or what we might get that we miss what we have.  That is a sad state in which so many live, and it's a tempting road to travel.  It's easy.  The road is wide that leads to that type of hamster-wheel of misery.  So it was a not-so-little twinge of panic that almost made me argue to not take the kids on the people train this time.  After all, when are they going to learn?  Ryan had NOT been gracious in any way about the possible trip this time.  He'd bugged us and melted down over it a lot this weekend.  I was ready to throw down the "never again" parental gauntlet in the name of saving my son from his ungratefulness problem.

Then my husband looked at me, asked if we could talk about it, and it hit me.

Grace and mercy.

This is a time to exercise grace and mercy for our child.  We need to understand that he doesn't understand.  All he knows is that this is his favorite thing, and we only do it with Grammy and Grampy. So we took the kids to the people train, to ride to downtown, get some ice cream, and ride back.  It was a lovely day, and the kids had a great time with Grammy and Grampy.  Ryan stimmed hard on the passing trees and buildings, searching all up and down the red line for every elevator, clinging to each one with his gaze until the train's speed ripped the picture from his line of sight.  Richie enjoyed watching the other trains pass, and spotting birds along the track.  Maelynn, in her stroller, enjoyed charming the other passengers in between snapping the rigid dress back onto her plastic Minnie Mouse doll.

The kid has to live sometime.  Life can't all be hard-earned.  Yes, there are consequences for our actions, and yes, I will continue to help Ryan, Richie, and Maelynn learn that lesson.  But much, much more I want them to learn to be graceful and merciful, loving and kind people.  Don't we receive completely undeserved blessings from our Heavenly Father every day?  We have received so much, and all of it... every breath, every heartbeat... has been ransomed from death.

Even before time began, God knew we couldn't follow the rules.  We couldn't be perfect.  So He sent His only Son, who descended into hell, making himself the sacrifice for our inability to be good.  He was buried, devastating his followers, until he rose on the third day, bringing the greatest hope ever known to all who believe.

This is the Christ we serve.  We serve someone who loves us enough to experience staggering amounts of brutality and separation from the Father so that we might know Him and be accepted by him.  We serve a man who served others, lived a perfect life, died a horrible and clearly unfair death, experienced death and separation apart from God, and rose again, beating the pants off death and hell!!!

With all that in mind, I'm pretty sure he'd have been cool with extending mercy and grace to a kid with autism who doesn't really understand this whole social graces thing in the first place.

And honestly, I love my kids... and I love seeing them happy, even for a moment of fleeting joy as the elevator passes.

So have a blessed, meaningful Easter, and remember... HE IS RISEN!!!

How deep the Father's love for us,
How vast beyond all measure
That He should give His only Son
To make a wretch His treasure

How great the pain of searing loss,
The Father turns His face away
As wounds which mar the chosen One,
Bring many sons to glory

Behold the Man upon a cross,
My sin upon His shoulders
Ashamed I hear my mocking voice,
Call out among the scoffers

It was my sin that left Him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished

I will not boast in anything
No gifts, no power, no wisdom
But I will boast in Jesus Christ
His death and resurrection

Why should I gain from His reward?
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom

~Stuart Townsend
(click below to listen)

Monday, April 2, 2012


Getting in the van to take Ryan to school this morning, I noticed that my iPod was dead (technically that's deadern' a doornail in eastern Oklahomaspeak, but y'know).  Arrgh.  In desperation to avoid listening to the one thing the kids have been so into lately, I glanced down and noticed the CD cases were in the van.  They'd been out, now they're back.  I had no idea, and I didn't put 'em there.  So I flipped through and after running across Christmas CDs and miscellaneous other stuff, I found the Old School Sesame Street CD.  Eh, we'll give this one a go.  I was honestly hoping Ryan wouldn't scream when it came on.

Soon as the bouncy, tin can alleyish theme song began, Ryan oozed excitement!  He hugged himself a bit and hummed, grinning from ear to ear.  Pure delight.  Complete surprise for Mommy.  He remembered it, and it was more than obvious that he was happy to hear it again!

So many of the people I read about and know online who have children like Ryan... who have one of the one in 88's... speak of this complete disregard for age-appropriateness in their children.  Ryan doesn't care that most six year old boys don't watch Elmo or Bob the Builder.  He doesn't care that most kids his age are out of the Thomas stage as well.  He just knows what he likes, and he goes with it.  

After I dropped Ryan off into the hands of the capable lady who helps him to the door every day, I remembered a simpler time.  My mind shot back to our little house in Fairfield, when Ryan was two months old.  We had barely moved in before school started, and I was getting unpacked as best I could with a two month old.  During packing breaks, I'd pick up my sweet, super easy baby boy and turn on that same CD and we'd dance, twirling around the kitchen, snuggling his tiny body, singing along with the cutesy songs I'd grown up with.  That time before I knew what lay ahead, and I didn't really care.  I had my dear husband, and I finally had what I'd wanted for as long as I could remember... I was the mommy.  

I don't understand why remembering the before time makes me cry.  I don't know why it hurts to think about.  It was such a sweet time, and I'd not trade it.  But it was the before time, so innocent in its own way.  Before pediatric glaucoma, before the surgeries that followed.  Before he even had his first fever.  

Before he started hitting milestones late. 

Before he quit hitting them altogether.  

Before he lost words and skills. 

Before we got scared and called ECI (Early Childhood Intervention).

Before I quit reading the little milestone emails because they hurt too much. 

Before we realized that he wasn't just a late talker.  

Before the word "autism" was first spoken.  

Before I wanted to rip the head off the first person who DARED speak it.  

Before I put my sweet baby boy in school at three.  

Before I had any idea how much he was (and later is brother and sister would be) my heart walking around outside my body. 

But it was also before I knew that no matter what anyone said about or labeled my boy as, he's still my boy.  He's still my Ryan.  

It was also before life with Ryan taught me what's important... and what's not. 

It's also before I learned to embrace who Ryan is, and in the process, who I am.  

It's also before I even began to scratch the surface of what true, loving sacrifice is.  

It's certainly before I knew much at all about autism and way before I knew how misunderstood these people are.  

It's definitely before I wanted to scream from the rooftops the truth... that these people have feelings, they can hear you, and throwaway words like the "r" word really are hurtful.  It's before I realized that beyond every tasteless short bus joke there's a mama like me, walking her sweet baby to the short bus, realizing that so many people I know make jokes about it, and how I'd like to go back and tell them how un-funny it is.

It's definitely before I knew so well the pain of the stares, the comments, and the fact that so often random people think they know your child and his diagnosis better than you, the doctors, the specialists, and the therapists combined.  

Before I knew what it was like to have someone ask about autism, how it affects Ryan, how it affects our family, and to totally tongue-tie because I'm so excited they asked and there's so much to say.  How do you shove the way you live your entire life into a few words?

It was long before I realized how my life was driven by preconceived notions; expectations of how our life "should" be... and how little I cared about what God intended it to be.  

Honestly, I felt a little silly this morning as I teared up listening to Sesame Street... but you know what, folks?  There's a lot of water under the bridge between the before time and where we are now on this journey, and there will be tons more.  So today as I attempt again to spread the word in my own little way about kids like Ryan, I find myself looking back and hugging the past, for it is those experiences that God used to bring us to where we are today.  

And after a good, long look back, I'm only interested in going forward. 

So have a blessed Autism Awareness day, Light it up Blue, dye your hair blue if you want... all that stuff makes me tear up too, because it shows that people see and are at least willing to hear of what these dear ones go through daily.  So many of you support these kids in these ways and through reading blogs like this one, A Diary of a MomRhema's HopePucks and Puzzle PiecesOpen Up and Let Go, and so many other sites that are a message in a bottle to those who need understanding and those who wish to understand.  Love and hugs to all the families who live in a household where every day is Autism Awareness Day... and of course, many thanks and tons of love to my little man, my buddy Ryan, who I am blessed, humbled, and honored to call my son.

And thanks and tons of love and hugs to his siblings... to Richie and Maelynn, who bless my heart by blessing their brother's heart.  They adore their "pal Ryan", as they call him.  Mommy's so proud of you two.  

Spread the word, folks.  Autism isn't contagious, but acceptance can be.  

Thanks be to God for you, dear Reader, the ones who understand, the ones who want to understand, and those who understand because they live it.  May your efforts be blessed!
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