Tuesday, May 28, 2013

Viral Hope

What day is it?  No, really.  Today feels like Monday, but I know it's Tuesday.  There are so many things I need to keep doing, to catch up on, but I keep forgetting what day it is.  Between the long weekend and the lost day yesterday, I'm struggling to keep up.

Over the past week, everyone in the family received a visit from the infamous stomach bug.  We had a reprieve from Wednesday to Saturday night, but it still feels like all we've done is run the washer, wipe everything with a disinfectant wipe, spray the things we can't wipe, and otherwise wash, clean, and scrub with fervor driven my the thought that one more of us might not get it.

Yeah, so... everyone got it.

Despite our best efforts to sanitize, wash hands, not drink after each other, and let's not forget the ever-popular "Stay away from me" cry, each one of us came down with a varying degree of ick.  It was miserable.  Ryan was first to get it.  He was the easiest sick patient!  Then Maelynn, then a break.  Then Richie.  Eric had a touch of it Sunday, then Mother and I were down all day Monday.

If you'e ever had that type of ailment, you know that misery too well.  And while it was awful and I couldn't wait for it to be over, it had an end.  The promise of an end to our agony was golden.

But what if there was no end?

What if the promise was better... maybe.  But definitely not an end.

What if all those around us could discuss our challenges, our issues, our frustrations and host of other problems, and we could hear them... but could offer no discussion ourselves.

So often I wonder if this isn't where Ryan is.

No, I don't know exactly what is in that sweet little head.  But I do believe that there is more than we think.  I know there's more than he can express.  Continually we are frustrated by education's best efforts at measuring and appraising his intelligence and abilities because they fall so short.  We have good people who do their best to sift through and learn about Ryan while teaching him about the world around him, but when it's time to sit down and talk about what he can do and translate that into state-appeasing numbers, so often the result is wrenching.

We are doing what we can for him.  We love him with all our hearts and want the very best for him.  And honestly, we're a little nervous.

When you live with something like autism, you have one foot in the future at all times.  I've talked so many times with people who encourage us by saying how much he's improved and how we shouldn't worry because he'll grow out of it.  I've even listened, bristling, through talks from well-meaning religious teacher-types who insist that if we simply had enough faith, that silly ol' mountain would just move right out of the way.

The truth is that the odds of Ryan simply growing out of this are not good.  He will likely improve, yes.  But how much we don't know.

I know that this sounds horribly unhopeful.  I know it sounds like I'm giving up on faith, dismissing it in favor of wallowing in the mire of the moment.  Hold on.

With the things we live around, I need a deeper hope than one that says "if you pray real hard and you're a real good girl, God will wave his wand and make it go away."  I need... and live in... a hope that says "It's hard.  But I'm with you."

I need a hope that helps me see how to enjoy life the way it is.

I need a hope that gives me a reason to get out of bed and keep trying, even when my day starts with screaming.

I need a hope that is more than a vending machine.  I need a hope that cannot be manipulated by what I do or do not do.

I need the grace that covers my inability to be a good girl and be happy-perky all the time.  

I need the mercy that covers my selfishness and desire to just lay down and cry.

I need the words of comfort that I'm not the first one to need to lay down and cry... and someone to cry to.

I need to be encouraged that, although there will always be people who don't understand or just don't care, and in that moment, God has my honor.  I can simply, calmly, educate where I can.

I need hope that reaches through the noise of the difficulty and differentness, bringing me back to rest in the knowledge that Ryan is just as fearfully and wonderfully made as any of us.

I need hope that is bigger than something happening or not happening.

I need hope that gives me courage to accept all that is... and the grace to start over when I refuse.

I need the sovereignty of God.

Because this ain't gonna be over in 24 hours.

Thanks be to God for his sovereignty.

Sunday, May 26, 2013

Loved like a Ladybug?

The other day, Richie ran up to me with a jar, all excited.

Mommymommymommy!  I found a lady bug! I'm gonna keep her in this house!  

When I took the jar to poke holes in the lid (poor lady bug), I noticed something watery and a little bubbly-ish in the bottom.  Surely he wouldn't spit on his new friend, right?  Asked about this substance,  he said, with the sweetest, most loving look in those innocent blue eyes,

I wanted her to have her own swimming pool, Mommy!

How can you argue with that?  

I did try, however.  And as I tried to explain how he should love his new friend, I realized I'm the same way.  

It's that time again. Once again, we are faced with the reality that we think we've reached the point where we understand how things are and won't be shocked or need another reality check. And of course things pop up to challenge us.

Every year until now, we've celebrated Ryan and Richie's birthdays at home with family. They were born three days apart, both on the Monday after school let out for the summer. They even shared the same original due date of June 9! Now that's family planning, right?

Since their birthdays are so close, I always envisioned a joint party for them. Both sets of friends, one venue, two cakes. One crazy day, then it's all over.

There is this one pesky thing about that. Just one. 

Ryan's best friends are his aid, his therapists, us, and his grandparents and aunts and uncles. And you can guess how interested they are in bounce houses.

Richie's at the age where he's made friends at preschool and church, and he wanted to have a party.

Seeing as our last name isn't Rockefeller, we began planning and saving right after Maelynn's birthday in February.  When we realized we could feasibly do this, I asked if Richie would rather have toys or a party with a bounce house and all his friends.  He chose his friends.

Shortly after I talked to him, it hit me.  What about Ryan?  What do we do?  How do we navigate this?

After talking to several folks, we decided that giving Ryan a party would be like spitting on the ladybug.  We would feel better, but it's not the way Ryan would feel loved the most.  He doesn't like crowds, and he hates candles and people singing randomly in large groups.  But you know what he does love?

Toy Story.

And knowing that, Richie decided he wanted to have a Toy Story party, because,

That would make my brudder Ryan happy.

Richie knows how to love his brudder.  And guess what we did?  

We had a Toy Story birthday.  Complete with Toy Story themed bounce house, Toy Story decorations, Toy Story cake that was Ryan's favorite kind, and "cheese pups", one of his favorite snacks.

Richie may not know how to love a lady bug, but he does know how to love his hero.  

Thanks be to God for you, little man.  We love you so much.  And I know Ryan, who got to be the undercover star of the party, loves you with all his heart too. 

Monday, May 20, 2013

For Moore.

There's not a lot I remember from my few, tiny years in Moore.

I remember the grocery store we frequented.  The red work truck Daddy drove, the little house out at Draper lake, and vaguely, the hospital where Mom worked.  The day care center where I spent so much time... that kind of thing.  I remember standing in that red Dodge between Mom and Daddy while we drove somewhere.

There's not that much else I remember from our years in Moore that I'd care to share.  There's the story of how Mother found out how stubborn I am took place in the house at Draper lake.  I remember being in my high chair in that kitchen, insisting on a bowl of chili... then realizing I'd made a mistake but eating it anyway, refusing to let it cool.

I remember picking cherry tomatoes in the garden in the backyard, crying because our Saint Bernard puppy laid across the narrrow concrete path preventing my mini plastic trike from passing.  I distinctly remember napping in the lid of my turtle sandbox under a thin blanket, resting my head on the pillow from the crib set my daughter is sleeping on now.

The rest of the memories are of the brief flash of a destructive storm that was my parents' marriage.  Shortly after these photos were shot, Mother and I left the house on Draper lake, moving to south OKC to start over.  

The rest of this Okie's heart's Moore memories are of the stepmother moving in, and long after, trying out for the All-State band at West Moore High School.  

Tonight, I'm pretty sure that house and the green and white feed store sign that, through all those years, still guided me to the house when I was auditioning for the University of Oklahoma.  

In between feeding the kids, cleaning the house for Richie's birthday party this weekend, and all the other mama things I had to do, I kept refreshing the news website.  Facebook.  Turning on the Weather Channel.  The same lady who spoke to us on the news when I was a child in Oklahoma City was professional, yet heartbroken, as she heard from the folks on site that an elementary school was hit.  

Then another.  

As I read stories to my sweet, priceless babies, I couldn't help but think of those parents tonight.  Those priceless babies waiting... and those who waited for them.  

And those who will never read stories to their babies again.  

We prayed for them out loud in generalities, because I didn't want to scare the kids... but my heart poured silently, begging God to bring some more alive.  Comfort them.  And oh, Lord... be with them.  

I know this won't likely make it to any of you who have been destroyed by this.  But this Okie is heartbroken with you.  

And I am so very sorry.  

I cannot imagine.  

I prayed for you as I hugged them.  Loved them.  Helped them brush their teeth, and got them one more drink of water.  I prayed for you as I kissed their sweet heads, watched them run down the hall in their clean PJ's, and tucked them into their beds. 

And I thanked the Lord for them.  

I've lived in Texas for nearly 18 years, but I'm still an Okie.  And my heart is broken for my dear home state.  

Thanks be to God that my sister, her husband, and my great-aunt in OKC are safe, and for all those men and women working to rescue and restore the people of Moore. 

Sunday, May 19, 2013

Zooming In

Check out this picture.  What do you see?

Okay, other than my need for photography classes.

If you can get past the fuzzies, you'll see a high school graduating class.  One of probably hundreds of thousands across the nation.  If you're the sentimental type, if I continue to press, you might see potential.  You might see a little over a hundred kids from a small town ready to break away and see what they can do.  You might see one chapter closing and another beginning.  You might see budding adulthoods all in neat rows, a hundred arrows ready to be fired into the unknown.

I see more.

Around the second row, I see a beautiful honor graduate.  Zooming closer than the camera is able, I see a talented artist.

I see a million laughs, giggles, and tears from joy and frustrated unfairness.

I see the hard work, the calculus homework, the time spent learning how to write a research paper... and how proud I was that she didn't even need help this time to score an A.

I see a heart passionate for so many things, not the least of which is her family and friends.

I see the loyalty that got her out of bed early the morning after prom to go to church with us so that she could support Ryan in the Waco Walk for Autism that afternoon.

I see the sweet friend who blocked out every Wednesday evening for five years to spend them in the craziness that is our home.

I see so very many things I'm going to miss.

I'm going to miss seeing that yellow car pull up.

I'm going to miss that text on Wednesday morning around ten that says:

 "What's for dinner? lol"

and going straight from that to Pinterest to see if there's anything she's pinning that I could make.  

Of course there's more... I'm going to miss helping her learn to do different random stuff, and having her come hang out when she's bored, and a host of other things.  As we go through all the graduation pomp and tradition, I've choked up at least once every time, thinking how proud we are of her, and how weird it is going to be to not have her around.

But I wouldn't discourage her leaving in a million years.  

As much as I'm going to miss her... as different as especially Wednesdays will be, I can't wait to see what God has in store for her.  She's an incredible young lady who is wise beyond her years.  Yes, she'll hit bumps in the road.  But I know she'll learn from them and keep pedaling.

So Godspeed, class of 2013.  Wishing all of you the best in everything you do, and certainly that all goes well for you.

For that one girl in the second row... you know, the one that drew us to class day and baccalaureate... we're gonna miss you like ca-razy.  But it's time for you to go make so many other folks' world a better place, and we're so proud of you.  God made you wonderfully, kiddo.  Thanks for always carving out time for us.  We love you.

Go get 'em.

Thanks be to God for our sweet J.

Wednesday, May 15, 2013

Wasted Time

I know what's been on your mind,
you're afraid it's all been wasted time.

~Don Henley, "Wasted Time"

A couple of weeks ago, during our last bible study meeting of the spring, the lady whose turn it was to facilitate left time at the end to share what we'd like the group to pray for this summer.  My internal search button spun quickly through all the things we have coming up, the specific concerns that wake me at night flying before my mind's eye at a dizzying rate.  There was no way I could put my finger on anything.  Every last thing is important, if not immediately then down the road.  

I had choices.  Pretend that all was fine and we were peachy keen?  Mention one specific thing, forgetting all else?  Try to gloss over the high points?  

And then it hit me.  The thing that I'd like for these dear ladies to intercede on my behalf in pursuit of was simply that I would enjoy the summer.  

On the face, it sounds terribly simple and maybe shallow and selfish.  And maybe it is.  

The thing is, days too often drag in monotony, frustration, and fatigue, but years fly.  

In the past few weeks, I've been blessed to hold two relatively newborn babies.  Both of them curled up on my shoulder just like Ryan, Richie, and Maelynn did once.  They stretched, cooed, yawned, fussed, and made all the same little baby sounds that my babies did.  My kids are definitely not tiny babies anymore.  I can still life Richie and Maelynn easily, but Ryan is quite a strain.  Gone are the days of having my dear newborns curled on my shoulder, sweetly sleeping away the hours.  

I'm sorry to say that I haven't always enjoyed them. 

I've even wished away time, spouting things like, "Well, I'll sure be happy when _____________ is over."  Insert what you want.  So many things fit there.  When marching season is over and Eric's home more, when we're through with diapers, when we've paid off this that or the other.  

Why do I think the deferment of my enjoyment of life is appropriate?  I must think it is, or I wouldn't respond that way.  And there are certainly times when looking forward to something or the end of something is appropriate and encouraged.  But to groan and detest every little monotonous thing about life, to have decided that my only job is to complain about what I don't have now or how hard it is right now, placing my hope in the shaky foundation of what might, maybe, happen tomorrow is no longer enough.  

No, I'm not asking the ladies of the bible study to pray that I'll have a happy, sugary-sweet, problem and worry free summer.  I'm asking for what I want.  What I want is to live, not just be alive. 

I don't want to just be happy all the time.  That is a naive expectation at best.  

Instead, I want to make the best of it all.  

Yes, so much of life with autism is hard.  Stressful.  Frustrating.  But I don't want to live life just with autism.  

I want to live life with Ryan.  Richie.  Maelynn.  Eric.  

I want to see their smiles, hear their laughter, and feel their hugs.  

I want to not be scared to try again when things go wrong.  

I certainly don't want to get so drowned in what is going wrong that I am blinded to all that is going right.

I want marching season, drumline camp, and school to roll around again knowing that we did our best this summer.  That we took time to draw with the kids on the sidewalk, and listened to their descriptions of their drawings.  

I want to live this summer and every other season rooted in the sovereignty of God and the peace and joy... the deep end of happy... that come with it.  The kind of joy that can feel and deal with sad when it comes, knowing it will all be alright eventually.  

Because they are far too precious for it to be wasted time.  

Thanks be to God for the ones with whom I share this life, and certainly for those who pray... and for true joy.

Monday, May 13, 2013

Mother's Day Excuses

Sometime Friday, I intended to sit down and get a nice Mother's Day post cranked out and ready to post on Sunday.  I can think of a thousand reasons to write any day, but especially the day that celebrates all of us who hang on during the ride of motherhood, only letting go during the times when the mama-coaster careens over another exhilarating hill and up another.

I could certainly write about my own mother, how she worked such excruciatingly long hours due to a ridiculously low amount of child support, and how she still managed to find a way to give me what I needed from her as my mom.  

I could go on about my Nanny, who worked like a dog to give us all what we needed... and a lot of what we wanted.  How my dear Tupperware queen of a grandmother pushed enough plastic to pay for my entire first year of college at a private university, all while being the beautiful pin that held our family in place. 

I could also go on about how I miss her, and how I had to practically sit on my hands yesterday to keep from writing on her Facebook wall.  

I could go on about my Fairy Godmother, as I like to call her, who not only planted seeds of scripture and faith in my life, but watered, weeded, pruned, and all-around held my hand for so many years... and how she will always hold so much of my heart. 

I certainly could jabber at length of the wonderful blessing Eric's Mom is to me.  She not only raised an amazing prince charming of a son and a wonderful daughter, she has whole heartedly loved on me ever since the day we began that sentence... "Mom, Dad, we have some news..." I can't imagine a lady being more gracious and loving.  I just can't. 

I could tell you about Eric's Nana, and how amazing I think she is, and why she'll always hold a hero's spot in my heart.

I considered talking at length of the mothers who climb crazy mountains of seeming impossibility every day in the situations of life that I cannot imagine.  The friends I have who are raising kids by themselves, by themselves most of the time due to a husband's job, or are dealing with special needs and health concerns are such heroes.  

Instead, on Friday I got dressed and ready to go to a movie with my mother and a kid I wish was mine, our dear J, because that's what I wanted for Mother's Day.  Oh my WORD it was fun!

The next day, Mother and I had fun planting a raised bed garden in the backyard.  Between that and the extra kiddo we had for the day, who was a lot more help than hindrance, by the way, I just didn't get it done.  

Sunday, I got to sleep in a bit because we're through with CE (your Sunday school) for the summer, then enjoyed worshipping with my mother, Eric's parents, and of course my dear Eric.  

Then we went to yet another amazing Mom's house.  We spent a glorious afternoon playing, visiting, and of course eating, drinking, and being merry at the home of my husband's aunt and uncle.  

Sometime around six-thirty last night, I had to make a choice.  

"Get crackin' on the Mother's Day post, girlie!" said my task-oriented self.  

Then this little golden-haired boy got upset and needed his mama.    

Then the most stunningly beautiful little girl asked if I'd paint her toes, "wiff da sparkwy pink!" 

Then they wanted to read out of her Star Wars book.  

Once they were in bed, my husband sat next to me, pulled me over into his arms, and that's when I knew this post would be late.  

But you know what?  

Just this once, I had some great reasons to procrastinate.  Scroll down and I'll show you. 

Aren't they wonderful?  

Thanks be to God for the three (well, kinda four) reasons I'm a Mama.  

Thursday, May 9, 2013

Just a Sign

I was taking Richie to school today, and I saw this.

If you know my oldest guy, you know he loves road signs.  He reads them without me knowing that's what he's doing, and then he likes to repeat what they say at random times.  Loudly.

I was angry.  So very angry that someone had nothing better to do than to run around town, likely under cover of darkness, and destroy community property.

I thought about calling and begging the city to do something.  But waiting for them to come along, clean the sign, take it away, or whatever they'd do just didn't seem right.

Then I realized something so simple... this is my community.  This is a block from my house, if that.  And on the way back from the post office, I saw that the same vandals had been at work other places in town.  So the sign on our street was just one more thing.  The city, I believe, would have taken care of it eventually... but it's a little close to entitlement to wait for them to do every. little. thing.

But it's not to us.  This is our home.  It's our city.  And while, when the middle school was vandalized, all I could really do was pray... but this is one sign.  It's low.  It's accessible to me, the road isn't terribly busy.  The nature of our community is small-town rural America, black top roads with little discernible edge, let alone a curb.

So after a Google search and a cheap trip to the dollar store, I plodded down the alley, along the road in my flip-flops and mommy jeans to the sign.  And wipe by wipe, scrub by scrub, I took that sign back. It's not perfect, but the word is gone.

In a tiny way, I defended my community's culture.  The culture I want for my community, anyway.

It's easy for me to click "Like" on a Facebook page.  It's easy to sit here and write about what I think, and what we need to do to make the world a better place.  But while I'm worrying and discussing all the things that I think need to change, I don't step out of my house to make MY city a better place very often.  So many of us have opinions about world events, sacred and secular, and there are so many who do great things in making a difference out there.  But sometimes, I fear, we get so wrapped up in the outside world that we forget our little world.

And what's the world made up of?  A ton of little worlds.

Please remember that what I did was small.  It was simply my unwillingness to have my son memorize that sign.  Without a child who can and does read these things and memorize them, and who will spout off what he's memorized wherever he is and pretty much as loudly as he wants, I might not have been as motivated.

But it's stirred an awareness of what it means to be a culture maker in my city.  And that doesn't necessarily mean I need to run for office, start a program, or do anything huge.  It does, however, mean I should do what's before me, what's within my reach, to preserve, to improve, and to just be a good steward of what we have.

And if it's there again tomorrow, I will do the same.  We love our little corner, our small but good city.

Thanks be to God for motivation, Google, and non-acetone nail polish remover.    

Wednesday, May 8, 2013

Sparkly Shoes

I am not trendy, never have been.  But I am into this one kind of shoes.  And one of the pair I have is this beautiful dark gray.  Sounds like me, right?

But hold on.  

They're gray, but they're also covered with the most glittery multicolored sparkles. 

It took a long time for me to decide it was okay for me to wear sparkly shoes.  

It's taking me a long time to get use to a lot of things.  

Rounding the corner, I could hear him.  That shrill squealish screamish yell.  The one that shoots to my core.  The one that pierces the happy Sunday morning bubble.  

I try to tell those I'm kind of running past, smiling to try to make things seem less hard.  

"Excuse me... so sorry... he's playing my song!"

We've had some good practice choking down the pain.  I grew up choking on it.  Making things look nice on the outside.  Another way I have to look back and thank God for being sovereign.  

He had a great morning until the very end.  

Now he's hitting.  He's screaming.  He's had trouble with potty issues lately, and in my heart, I know that's bothering him.  Just like so many other things that we cannot change, we can only keep going.  

I stand with my sparkly shoes blocking the door that he so desperately feels the need to throw.  I'm learning that just minimizing damage is good.  Sometimes I have to help him not hurt himself, but this time it's more taking deep breaths and being his calm.  

Letting him know I'm there.  

Mommy's here.  It's okay.  Mommy loves you.  It has to be said with my hands.  His ears aren't receiving information. 

Bargaining is out the window.  I tried.  It failed.  If/then didn't work.  

In a fit of my own desperation, in a split second lull, I turn him by his shoulders and hug him.  He hangs on me.  In my sparkly shoes, I lift him into my arms.  He's calm, and it's time to find Daddy and Granny and brother.  

Can't get there without help.  The help that is Christ's hands and feet with skin on to us... to Ryan.  

Maybe it was the knowledge that this was the last week of CE for the summer.  

Maybe it was the potty accident this morning that left me cleaning the bathroom in my sparkly shoes.  

As we walk, I thank the Lord that I can carry him.  Once we sit, I realize again that this is worship.  

Carrying him to learn to worship is worship.  Loving him this way... being his calm... is worship.  

I've been asked if it wouldn't be better to have a children's church.  If there were someone to take him off our hands so that we could worship.  If there were something to make it easier... to maybe make it easier on the girl in me who loves sparkly things... the mother in me who agonizes with his screams... wouldn't we take advantage?  

By the grace of God, no.  

Throughout the service, I had two little boys who will grow to be men with their heads in my lap.  I sat as still as possible for the one on the right, and stroked the hair of the one on the left.  

I opened my arms to accept a beautiful little girl who will grow to be a lady right before communion.  She, too, will be in my lap before long. 

We walk to the front, thankfully accept the elements as individuals... but also as a family.  We half-run back trying to keep Ryan from taking out the offering boxes as he runs to the back.  Once we're back in our safe place, my girl sits beside me.  

I cross my left leg over my right, and our sparkly shoes touch.  I don't care how shallow it sounds... the daylight streaming through the window behind us catches the delicious glitteryness... and my heart smiles.  

In the midst of our greatest trials, we forget what lies at our foundation.  The wonderfulness that we can count on.  We see the gray, and in the darkness of the fear of the future, we miss the sparkle.  

But just when it's darkest, the light shines through, if just for a moment, and we see their spark.  We see the glitter in their eyes, the warmth of his delightful smile, the golden-brown curls capped with a pink bow, the sweet red lips contrasted with bright eyes that curl next to me, saying, "I love you, Mom."  

I love you, too. All three of you, your father... and through all the times, I pray that we will never forget to enjoy the sparkle.  

After all, it's there the whole time. 

Thanks be to God for giving us the things that make our hearts smile. And for glittery shoes.  I really like those.  

Monday, May 6, 2013

It's not your... or my... fault.

I just got through looking at this article, billed as a great explanation of what autism is.  While it does a good job of hitting the technical high points, I had a hard time with the fact that right after "what is autism" they go into on listing the environmental factors that cause autism.  Then they spend all of a sentence or two saying that these things do not cause autism, but merely make it more likely. Well, check out the paragraphs that got in my craw for yourself.
In the presence of a genetic predisposition to autism, a number of nongenetic, or “environmental,” stresses appear to further increase a child’s risk. The clearest evidence of these autism risk factors involves events before and during birth. They include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain. It is important to keep in mind that these factors, by themselves, do not cause autism. Rather, in combination with genetic risk factors, they appear to modestly increase risk.
A growing body of research suggests that a woman can reduce her risk of having a child with autism by taking prenatal vitamins containing folic acid and/or eating a diet rich in folic acid (at least 600 mcg a day) during the months before and after conception.  

This article was supposed to explain the ins and outs of autism.  It was billed as an explanation of what autism is.  Instead, it spent a few paragraphs explaining autism, then jumped to what causes it.

I've got to learn to stop reading these.

Their research doesn't ring true in my family.  I was the very most careful with my pregnancy with Ryan.  I gave up caffeine completely, took my prenatal vitamins, and took folic acid before he was conceived.  I didn't each lunchmeat (which wasn't hard because I didn't like it, but still), and tried to stay away from processed foods.  I got exercise, read every little thing I could get my hands on, and drank tons of water, mostly with lemon because my doctor said it would help with swelling.  I was never sick during pregnancy with him, and when I got pregnant, Eric was 32 and I was 25.  The only true birth complication with Ryan was the fact that his sweet little booty was wedged... and that's the word the midwife used... in my pelvis.  We tried to have him turned, which was painful, expensive, and didn't work.  After that, I walked calmly into OR for surgical delivery.

With Richie, I kinda halfway quit caffeine.  I gave up around halfway through, when I discovered that we'd be moving when I was nine months pregnant or so.  I ate what we could afford, which was often what I made.  But I certainly didn't worry about not eating processed foods.

With Maelynn, I did everything but juggle knives.

With both Richie and Maelynn, I became sick enough to run a fever at least for a short time.  And with Maelynn, I was on antibiotics for a UTI.

Guess which two kids are neurotypical.

I'm not saying I don't appreciate research.  I'm not saying I don't like the work of Autism Speaks.  Almost anything that furthers awareness, understanding, prevention, and the all-important early intervention I'm all for promoting.  So before anyone fires a letter off to Autism Speaks to tell them I hate them, WHOA.  Not saying that.

What I am saying is that there are tons of families struggling.  Awareness is great.  And should we learn what causes even one form of autism, let's do it!  Let's use that to our advantage!  It's just so hard to listen, as an autism mom, and I'm sure it's the same for every other disability, to the list of stuff we could have avoided.  Because guess what?  The ones who are reading the articles are likely the ones who did try to have the healthiest pregnancy possible.

One of the first things my OB told me after our rather scary and somewhat life-threatening miscarriage was, "You didn't do anything to cause this.  You didn't have one two many diet cokes, cups of coffee, or ANYTHING that caused this.  It just happens."

So let's go ahead and do the research.  By all means, let's try to prevent what we can.  But as the ones left with the autistic child reading said research, we have to stop and remind each other that we didn't do anything to cause this.  We are not lesser parents.

Because I spent years thinking there had to have been something I did.  He was with me from the time he was conceived, so I felt like the odds were pretty good that something I did caused this.  Too much TV?  Too many buffalo wings?  Did I stand too close to the copier at work?  We lived in the city... could air quality have done it?  Stress?  That one root beer I had that I didn't realize had caffeine?

I don't know what causes it.  I do know, however, that my child and all of yours are fearfully and wonderfully made, and that the One who flung the stars into space knows each hair on my child's head, and knew him before he was born.  I know that raising Ryan has made me a better person.

All you moms and dads reading the research, seeing the headlines, and wringing your hands over what you *might* have done... please, please, please hear me.

You didn't do anything to cause this.

You love that sweet kid every day, through the messes, frustrations, meltdowns, and all, and you know what?   That's what he needs.  To know you'll be there.  And that you value and delight in him.

I wish I could hug every one of you and tell you that in person, but I guess this will have to do.

Thanks be to God for us, our children, and the things that make them distinct, whether or not a diagnosis had anything to do with it.

Friday, May 3, 2013

Concerted Effort

When your Dad is a band director, you really ought to go to the concerts.  When your Mom is a band director at heart, you're expected to not only go, but also behave.


So many times I've come here lamenting the difficulty of going to concerts, parades, contests, etc.  And I used to either skip the concert to avoid the embarrassment or, in a fit of normalcy, attempt to force them into the "perfect band director's kid" mold in my head.

Both ended in tears too often.  Don't forget guilt.  There's that, too.  It's as our dear ol' music history prof said in college:

"Music should be framed *insert dramatic gasp* in SILENCE."

Well, guess what.  As long as we're in this town, I doubt it will always be framed in silence.  As long as the Senzigs are there, anyway.  

To my musically educated brain, the notion of this hurts.  It feels a bit like selling out, forgetting who you are, or maybe even giving up.  Like I'm forgetting the hard work these kids put into this concert, simply by having given up enough, as the inactive music teacher that I am, enough to show up to a high school band concert in my jeans, with my kids mostly in the same.  With my daughter in a tutu, sort-of matching tights, and sparkly princess shoes, just because that made her excited to go.  

With my seven year old son on his knees in the seat, leaning over and reminding him to stay in his seat when he attempts to get up, whispering loudly, "in your seat or no ice cream."  There has to be that little "or" in there.  And guess what?  It works.  For all of five minutes, but it works.  

With my dear middle child, my golden-locked Richie, sitting up perfectly for his Daddy's portion of the concert, then falling asleep in my lap.

You know what?  The one who fell asleep is the one who acted the way I dreamed my kids would.  And that is so sad.

Why in the world is that sad?  It's okay that he fell asleep.  I'm not upset with him.  But if you had seen the way my daughter and oldest enjoyed the music, and were completely themselves, the contrast is striking.

My dreams of the perfectly behaved children were not inherently bad, I suppose.  But the pride and selfishness that surrounded that desire isn't so hot.

The way I go to concerts, even with the help of my Mother, isn't at all what I thought it would be.  And sometimes, it's a little closer.  It has been in the past.  But for now, we can't stop on the way in and chat.  We have to show up right as things are starting, barreling straight into the auditorium and to our seats.  Once we're there, we shoot for quiet.

Let's face it, folks.  You put an autistic seven year old whose newest hobby, much to his parents' frustration, is belching as loudly as possible with a four year old who is just too tired for this, and add a fabulous, sparkly dash of princess who LOVES music and LOVES to dance... and well, it's going to be interesting.

And it was.

I must be honest.  I have given up on something.  Well, as far as our participation in these types of events goes, anyway.


I'm doing my best to leave it behind.

Let's think about this for a minute.  What is my aim at bringing my kids to these things?  To educate them on proper concert etiquette at all cost?  To that, I must ask... what is that cost?  Let's measure it.

My sanity.

My kids' love of band.  Concerts, contests, etc. included.

Having my kids, namely Ryan, so afraid of what will happen that he starts screaming when I say the word "concert".

I am not, please understand, saying that I have given up this venture entirely.  I have not and will not, and I will continue to social story them to death (yes, even the neurotypical ones) about the way we act in concerts.  I will do my best to model such behavior.  And I will keep them as quiet as possible, pulling them out if they become a major disruption... think screaming here, folks.  And I will continue to run as soon as the concert is over, as long as my Ryan is scared of the band hall.  Yes, he is afraid the lights will go off when he's there.  No kidding.  I wish I was.

But I am not going to feel guilty for taking them in the first place.

I will take them.  They will do their best, I will do mine.

Because the aim here is to teach them about Daddy's world... and my world, ten years ago.  The aim is not to have them act "perfectly".  What is perfect, anyway?  To so many, my Richie, who slept through the concert, is perfectly behaved for a concert.

What I'm learning is that perfect is not always best.

Maelynn shook her little tail feathers.  She LOVED the concert.  She smiled, grinned, and I had a very hard time keeping her quiet.  I gave up keeping her in a seat about halfway through. There will come a day when she's too big or feels too much societal pressure to keep her delight in things to herself, and until then, she'll dance like no one is watching, within reason.  This is the most still I could get her!

Ryan did his best.  And he messed up big time.  During one of the quietest moments in the concert, right before a piece began, he showed off his new-found skill.

You got it.  Earth-shattering belch.

I wanted the earth to open and swallow me whole.  But guess what?

It didn't.  It won't.  For whatever reason, social cues such as "don't belch in public, especially at a quiet event" just completely escape that kid.

Here's the other thing:  He won't always be a kid.  He will be an adult.  He will continue to grow, and even if we keep him in public school until he's 21, which is completely legal and acceptable, he will still be a grown man.  And guess what else?

As long as my husband is teaching band, he will get to see his Daddy work.

I may be in for some really embarrassing moments, y'all.  It may get better, yes.  But it may not.  And just as the earth did not open and swallow me, life will go on.  And I have two choices.  Take these things, learn from them, use them as catalysts to keep teaching our kids the way the world goes and loving them with a joyful, deep, all-encompassing of a love as I can, or I can crawl in a hole.  In the hole comes whining, wallowing, cursing my existence.

I tried the latter.

Having tried the latter, I'm shooting for the God-glorifying former.  Not that I'll always make it... but you know what?  I'm not going to feel guilty about those times either.

Life more abundantly... I'm starting to get it.  And it has very little to do with guilt.

It has a lot to do with effort.

Thanks be to God for giving us so many things to enjoy, and so many perspectives from which to enjoy them.

Wednesday, May 1, 2013

With Membership Comes Privileges

When I was in college, I was all about getting out of college.  I knew exactly what I wanted to do, and wanted to hurry up and do it already.  I was one of those oddballs who took 8 AM classes every day, went to school year-round, but not because I'm scholarly.  I just wanted to teach band already.

About my sophomore year, maybe end of my freshman year, the older girls in band started talking about pledging this and that.  Keep in mind that this was Hardin-Simmons University, and they only allowed national fraternities and sororities that were profession-based.  In other words, unless you went to HSU too, I'm probably not your long lost sister.  Technically, my dear alma mater only had foot-functions and turkey trots, never dances.  And there were no fraternities and sororities, partying it up... only "social clubs".

So in an honest attempt to relax and have a little more fun in college, I pledged a sorority social club.  It really was nothing like your state-school experience, except that there was mostly good natured hazing. I'd tell you more, but I'd have to kill you might make some folks mad.  It's really not that serious, just a bunch of girls enjoying the experience of college together.  Sharing some rather goofy traditions, which included memorizing our pledge book and regurgitating it onto paper word-for-word, and a lot of it was memorizing scripture.  Most of that, I'm sad to say, I barely remember.

But we were all AIO girls.  We were bonded by the unique (work with me here) experience of going through four weeks of mind games.  Nothing sinister, all in fun.  But you did bond with these ladies, and only a couple of them knew anything about music, so it was a good break for me, I suppose.  I did enjoy it, and there are several wonderful people I met and got to know that I never would have otherwise.  It was fun, it taught me a lot about dealing with people... even the not-so-fun parts.  So yes, I'd recommend it with few exceptions.

But the fraternity I'm now a part of I just can't recommend.

Saturday night, I felt like I was at one of our AIO formals.

We've run the gamut of such similar emotions, thoughts, and frustrations.  We didn't choose this club, but there are so many things we've learned that we'd never trade.

Instead of secret traditions carried out during late night trips to undisclosed locations, we share stories of IEP's, diagnoses, doctor appointments, trips to anywhere, stares, shuns, and downright aching disappointment.

But we also share the good stuff.  Stuff that can only be so good after you've fought so. very. long.

The exhilaration of the first word.  The first point.

The tear-filled delight of the first time he showed you a glimpse into his thoughts, even as simple as pointing at the tv and smiling.

The heart-overflowing vision of his smile.  The sound of her laughter.

The instant connection when you meet someone else who belongs to the club.

Although we didn't choose this fraternity, we learn to see the amazing in amidst the pain.  I can't tell you how differently I view things as simple as the ability to ask for what I want.  To tell you how I feel.  To walk through a crowd, stay with my group, and process all the sounds and smells without having to smack my ears with my fists in frustration.

The simple becomes the infinitely complicated.  The otherwise-common becomes the most celebrated and treasured.

If you're new to the club, don't panic.  Shut out the noise and continue to love that little one, remembering that your diagnosis is a ticket to the services you need.  It's a primer to beginning to understand what goes on in that little head.

But try not to shut out the ones who really care.  And when you're ready, look for some of us. Even among us there will be some who do things differently, and that's okay.  You know what else is okay?

The pain.  You're not the only one.  It's hard, and it hurts.

But I promise you that it's not the end of the world.  Sometimes it will feel like it, but it is NOT the end of the world.

Above it all, remember that this little one who has received or is in the process of receiving a label is still the same little one you've loved all along.  This little one is still the child for whom you prayed, and he or she is definitely a part of God's plan.  Jeremiah 29:11 is not limited to the neurotypical.  It's not limited to those with just the right amount of chromosomes, nor the ones who looks and dress just as we do.

Keep going.  You're not alone.  You have brothers and sisters all over the place.

Your struggles are worth it.  They are heard.  So are your child's.  And if it makes you feel better, maybe we can make up one of those secret handshakes.  Oh wait, we already have one.

Cutest. Stim. Ever.

Thanks be to God for the things that make us distinct, and the common ties that bind.  And certainly thanks be for the moments when we find a kindred spirit.

Related Posts Plugin for WordPress, Blogger...