Like Brother, Like Brother

These boys are nuts about each other.  Richie, at five years old, thinks that Ryan hung the moon.  I've always known and loved this about him.  So much so, actually, that I never saw it coming.  

The other day, Richie looked at me with those trusting blue eyes and asked the first question that has left me truly speechless.  

"Mommy, when will I be like brother?" 

This was after a pretty large-scale meltdown.  Grasping for understanding, and desperately hoping he didn't think what I thought he meant, I told him he'd keep growing and soon he'd be tall like brother.  

"No Mommy, when will I hit and yell like Ryan does?  When?" 

Um... 

Uh... 

Well, son... 

What do you say?  This is his hero.  If I go too strong on the "gee, son... are you aware that I'm thrilled that you don't have autism and will never be like brother" then I could damage that wide-eyed little brother wonder.  If I go too far the other way, I'm encouraging to hit and yell.  To do the very things that I spend so much effort trying to get Ryan to stop doing.  

Truth is a must.  Reality is a must.  But so is consideration for his feelings and their relationship.  

This is not the first time I've seen this.  Ryan has a long history of hitting and screaming.  He used to be worse about hitting his head on anything he could find.  When he was upset at school, I had to pick him up several times because they couldn't get him to stop hitting his head on the concrete and tile floor.  

Yes, at four.  Yes, that hard.  He came home with bruises on his elbows from where he banged them, too.  

He took to this at home as well.  Then, we were in a rent house with hardwood floors.  Richie was just a baby, maybe a little over a year old.  He saw Ryan hit his head on the floor, and even in his tender, baby state, he wanted to do whatever brother did.  So he leaned his chubby little body over and whacked his head on the floor in a fit.  

He stopped, looked at me as if to ask why in the world brother does that, then never did it again.  

I wonder what it will take this time.  

They play together.  They sleep in the same room.  And recently, Richie has started showing signs of wanting to do whatever brother does.  So when he asks, I try to explain.  I'm not sure what gets through or how helpful it is at all, but I try.  We talk about how brother's brain works differently than ours.  We talk without using words like "normal" as best we can.  

He knows that his brother has something called autism.  He knows that he gets frustrated and a little scared when brother gets agitated sometimes.  But he doesn't know that everyone else's brother still watches Thomas and plays with trains at eight years old.  He doesn't know, doesn't care, and that's great.  

Mostly. 

At some point, our littles are going to have to hear the truth about brother.  Or maybe it's just something they'll figure out gradually... maybe there will be some point where they see someone else's big brother and how he acts, or maybe they'll see Ryan with his peers and realize that his behavior is completely different.  I always thought they'd notice when they passed him developmentally.  They both have, other than in writing and other academics, passed their brother.  Even at three years old, Maelynn has better communication, social, and behavioral skills than her brother. 

Instead, Richie at least, is seeing the difference and assuming that he's the one who hasn't grown.  

This is one of those things that really has me stumped.  I didn't see it coming.  Initially, it brought me to tears.  The love this boy has for his brother, the completely seeing love he has amazes me.  He sees his brother at his worst and still adores him.  People like to say that love is blind... I think love sees the best.  It sees as things really are, and in this case, not only accepts but wants to absorb those traits.  

He sees, he loves, and he wants to emulate.  He does not only see, he studies and copies.  When it hurts him, he forgives.  He loves so intensely, so completely, that although he is exposed to more typical behavior, he wants to be like his brother.  

Of all the things I can think to say to him, nothing seems to work.  No words seem to do service to his devotion or that situation without raining far too much weighty reality on his young head.  But truth is important, right?

How do I tell him who his brother clinically is without destroying the wonder of who he is?

There are some things in life that have to be lived.  There are experiences that, while they can be explained all day long, cannot truly be understood without experience.  I'll have to wait.  I'll have to listen and wait for his questions, and give him little bits at a time.  

After all, I didn't know what it was going to be like to be married until I was.  I didn't know what it was like to be pregnant until I was.  And I didn't know what it was like to have an autistic child until I did.  

So the best thing I can think to do is to hold his... and Maelynn's... hands as they walk through life learning to love brother and still be themselves.  Be ready to listen, answer where I can, and admit I don't know when I don't.  

What did I say when he asked when he'd be like brother?  Not much.  I hugged him tight, and I cried.  Throughout the day, I tried to find ways to talk to him, gently... but I'm not sure I did any good.  

Thanks be to God for the love of a brother, a true friend, a biggest fan... and for always only showing us what we can handle knowing. 

I Love Someone...

There are so many ways that social media makes it easy to show support for others.  Have a friend in need of encouragement?  Email 'em.  Have a friend with a great need?  Create a Facebook group to keep everyone posted.  Have a friend with a child with a special need?  Share a picture, video, or other inspiring story.  As many people as you want can see your support.

It's encouraging to see people repost stuff about autism, loving people with autism, accepting them, not judging, etc.  It really is.  But as I caught myself posting a beautiful picture of hands in the shape of a heart with "I love someone with autism" in the heart, I couldn't help but think of what that means.

For you, it might mean smiling at someone at school.  It might mean sitting with them when no one else does.  It might mean finding other ways to show kindness, even in little ways.  It also might mean defending said person, child or adult, against bullies.  You may know what it's like to ask someone to stop speaking of someone that way... or you might be the one who shows them he's a pretty neat guy after all.

I'm grateful for you. You are the ones who will do things in places where I cannot be.  Although we autism moms feel like we have to live forever and be everything sometimes, the truth is I'm just a person.  I have to let go and let him do things like go to school.  Someday that will be work, and I'll be praying that you're there for him.

For some others, you're a bit closer.  You're the aunt or uncle, grandparent or close family friend.  You've opened your home to the uncertainty that can be a little guy like mine.  Maybe you've even been with us through a meltdown.  Maybe you've been one of the few, the brave... to take a trip with us to someplace like the zoo.  Or maybe you're the awesome uncle who played and swam with he and his brother and sister, and while he was careful to keep you safe, he loved on and played with you just as much as you were comfortable.  None of you have had training, you just love who you love.  And by golly, a little different isn't going to stop you.

I'm grateful for you too.  Our families (including friends who are family) are so crucial to us, and your loving attitude toward the often shocking differentness makes it possible for us to spend time with you.  Thank you for teaching your kids about ours through your love of him, too.  You'll find that example is the best teacher.

Then there are the kinds of you who love autistic kids by choice.  You've chosen to spend your professional life with these dear ones, helping them and their families while they feel their way in the world.  You sit in someone else's house, a clinic, or a classroom while your own children are at the day care, babysitter, or school.  You've given endless amounts of time and money to help our children and, by extension, their families.  You love kids with autism with your life by choice, whether you're speech, occupational therapy, music therapy, child psychology, ABA, physical therapy, or a special education or regular teacher.  Your contribution to our lives is an answer to prayer.

Last, there's the set like myself.  Moms, Dads, brothers and sisters.  Loving kids with autism to us wasn't as much of a choice as a compulsion.  And this is where those little posts don't sink to the marrow of how it really is.  I don't love a kid with autism.

I love Ryan.

I love how he runs to me, giggling, and throws his arms around me.

I love how he says, "Mama picka upa Ryan!"

I love his cool cheek against mine while I struggle to hold all 85 pounds of him.

I love how he draws me into his chanting games.

I love how, when I'm really busy, he will come and say, "Mom will sit on the couch!" And lay his head on my lap.

I love his sense of humor.

I love how he patted his brother on the head this morning, saying "Good job!"

I love how happy that made his brother.

I love how he has no concern for social convention, pretension, or anything like that.  And I love how he's cutting those things out of my life.

I love how even the things I DO NOT love about autism make me better.  How they hold a mirror to my heart, shedding light on the most selfish parts of me, exposing room for improvement.

I love how his smile makes me feel.  And his laugh?  Amazing.

So what does it mean to love a kid with autism?  It's different for every one of us.  I'm sure if my husband were home, he could think of several things to add.

To love a kid with autism?  It's our whole lives.  It colors every decision, shapes every plan, and re-thinks even the most droll, regular of the mundane.  To love a kid with autism is to love our son. And that?  It's as easy as falling off a log.  He may have a hard time fitting into the classroom, the grocery store, or someplace like the mall or the zoo, but he fits perfectly into our hearts.

Thanks be to God for Ryan... and for all of you who love him and kids like him too.

Bridging the Gap

I thought by the third week I'd surely be through choking up watching Maelynn in dance. After all, the new is pretty much off. Okay, she still begs for dance all week, but I'm a grown woman. Surely the new has worn off of seeing my baby girl dancing around in her little leotard-dress thingy, looking absolutely adorable.

Boy was I wrong. 

We were late, for starters. Instead of putting her in flip flops and changing carefully once in the studio, I wrested them on as quickly as possible inthe driveway at home as we hurried. When we arrived, I carried her in, forgetting to tie one of her tiny ballet slippers. She didn't seem to notice, fluttering off to stand with the friend she made at sign ups. 

As the tiny ballerinas began to joyfully copy their teacher's movements, Maelynn squatted to mess with the shoe I failed to tie. She couldn't enjoy herself because something wasn't right. 

Soon the teacher led the little ballerinas to stand in a circle, all joining hands to start the next activity. Only one little ballerina stayed behind... The one whose mama forgot to tie her shoe. 

She sat there fiddling with her shoe, trying with all her three year old might to tie it or tuck it somewhere. Just as I was about to jump up and help her, a tiny dancer left the line. 

Leaving the circle, her friend came to try to help. She sat and twisted at the stretchy laces in an attempt to make sure Maelynn wasn't left out.  When the teacher noticed this, she asked the girls in her usual chipper tone to go ahead and come to the circle, assuring that she'd help.  The friend stood, reached her hand to Maelynn, and there came mommy's waterworks.

It's a seemingly small gesture on the face of it.  But that small, 3 or 4 year old girl left something she likely looks forward to all week, just like Maelynn, to make sure her friend was able to participate.

A tiny little girl turned from something she loved to bridge the gap for a friend.

To notice that someone is outside, first is where this all-important love begins.  Then to turn from the inside, go to them, learn what is needed to bring them to the inside... that is a friend.  That is more than a friend, really.  It's the love we're meant to show one another.  It's how we should operate, because someone first did it for us.

Thanks be to God for bridging the gap, and for tiny ballerinas who remind us not only how to love one another, but how you first loved us.

The Story

This is a repost from a couple of years ago last March... in celebration of our first date eleven years ago September 21... and because frankly, it's my favorite love story.  Either way, here you go.  To all you singles out there, especially the still-in-school set, we're the exception rather than the rule.  

But to all rules, at some point, God reserves the right to make an exception.  

A Practical-ish Fairy Tale (of sorts)

Once upon a time, there was a lonely young lady (well, she tried to be a lady) who loved to teach band but wanted to live her first dream... to be a wife and a mommy.  Since you can't go to school or work toward that dream, she enjoyed her job, hung out with her friends, and did her best to be a godly young woman... okay, maybe she didn't do exactly her best all the time... *ahem*... but you get the point.
One weekend, the lonely young lady went to judge in the stead of a retired fellow band director whom she respected greatly so that he could be with his daughter as she tried out for TMEA all-region (most of our kids tried out for ATSSB.  If this alphabet soup means nothing, just go with it).  All the way to the tryouts, the retired band director joked about how the lonely young lady was going to meet her husband on this panel.  With a "haha, yeah right" the lonely young lady laughed off this notion politely, while secretly hoping he was right.  

At the tryouts, the lonely young lady found her room and got settled in a seat next to the panel chair.  Now, on these panels there are five band directors who listen to the kids one by one behind a partition.  Let's just say it's a long day. In breaks between auditionees, the other judges laughed and joked and visited with the lonely young lady (who, at that moment, wasn't feeling very lonely at all).  Well, three of the judges visited and laughed and cut-up... one didn't.  He sat at the end of the short line of desks lined up against a brick wall, immersed in a book until it was time to start listening again.  Surely the retired band director was wrong, thought the lonely young lady.  She noticed that the panel chair was very married, and kinda short.  Yeek.  The person to her right was another lady, one she knew, but double yeek... she was a lady too.  the next was another married man.  The man on the end of the line of chairs was not married, but... *sigh*... he just didn't seem interested in anything other than his book.  "Definitely not my type," thought the lonely young lady, "he doesn't laugh or joke or seem very nice at all."  Hmph. 

And so, the lonely young lady continued her search for Mr. God's Best.  She came across one who was too shy, then one who was too tall, then one who just didn't work out at all.  "I GIVE UP!" said the lonely young lady at last, and followed a job offer to another town. 

During a staff meeting at the new job, the lonely young lady enjoyed meeting the rest of the staff of five.  She knew she'd surely miss the sweet family she worked for before and all the wonderful students, but she felt God's call to this town and was sure although it was hard to tell through the heartbreak of losing those people.  In a restaurant that day, she met the head director, the assistant high school director, and the junior high director (who would turn out to be one of the best friends a girl could ever get into mischief with I MEAN have).  But where was the fifth guy?  Just as the head director said his name, in walks mr. head in his book. 

"OH NO!" said the lonely young lady.  "Not him!  Anyone but him!" 

Little did the lonely young lady know that mr. head in his book was her knight in invisible armor... Mr. God's Best. 

Within two months, the lonely young lady began to date Mr. God's Best.  A week and a half after they began dating, the lonely young lady became The Future Mrs. God's Best.  

As I'm sure you've figured out, Mr. God's Best is my Eric.  

I've asked him over and over what in the world posessed him to ask me to marry him after just a week and a half of dating.  Over and over, he's said he just knew.  And on occasion, he asks me why I said yes... to which I have to smile and admit that I guess I just knew, too.  I also have to admit that agreeing to marry him may just be the best decision I ever made... I'm sure it's the best snap decision I ever made!  

So since September of 2002 (when we started to date), Eric and I have been through our share of better and worse, but it all started with that decision.  I still marvel at the ease with which we agreed to enter into such a huge commitment.  But when you know what we know about God's providence, timing, and plan, it's not nearly as crazy.  See, God not only knew what we'd been through, who we were, and how much we needed each other... He knew exactly how to time things to make it all happen.  
Really, this fairy tale began forty years ago tomorrow on March 21, when the world first laid eyes on Eric Senzig. We've been through tons together and will go through tons more, and I can't imagine going through daily struggles of parenting, living, teaching, and just breathing with anyone else.  I certainly can't imagine celebrating, laughing, and sharing life with anyone else, nor would I want to!     

So tonight on the last day of my dear Eric's thirties, I would like to wish him a blessed birthday tomorrow, and many, many more years of love, tears, laughter, hugs, and joy to follow.  I'd also like to congratulate his dear parents on their fortieth anniversary of parenthood!  I'm so thankful for my amazing husband and so grateful for the Lord's providence in everything about our lives.  He who has promised us is FAITHFUL!  He has a plan for our lives, and it is to prosper and not to harm us, to give us a hope and a future!  

So happy birthday, sweetheart.  You truly are Mr. God's Best. 


Yes, I was incredibly wrong about who Eric was at the beginning.  He is wonderful, sweet, caring, funny, loving, patient, and an amazing father.  Yes, he does love to read and his love of reading can at times make him tune things out.  But he had prayed for his wife, and even before that his parents had prayed for his wife.  I was prayed for before my parents were married!  Yes, a full seven years before I was born!  What a wonderful wedding present to give to your future son or daughter-in-law. 

Perspective

In our new surroundings while the Baylor Autism Resource Center works hard on a delayed relocation, Richie asked to play with my phone.  Usually I tell him yes, but to please not take a thousand pictures.

Yeah, he didn't take a thousand, but he did take about fifteen or twenty.  Here are a few of my favorites:

First, the staircase through the glass-and-metal railing.

The tables that are mercifully placed in the waiting area... or study area, I suppose.  

The little ledge by the huge window where they love to sit and look out on the Baylor campus.  Oh, and my foot. 

Then he said he wanted to take a picture of his sissy... 

... then the trash can.

And my personal favorite, the five-year-old's selfie.  

Just look at that sweet face!  

I started to delete these photos from my phone, shaking my head and giggling a little at the inanimate objects of his attention.  Then I looked again, and had to stick them in something for posterity.  

This is his perspective.  The closest thing we can get to seeing through his eyes.  

Richie, as far as we know, is neurotypical.  No spectrummy issues here.  He does describe things to us, how he feels, what he likes. And he has the same "nothing" answer when I pick him up from school and ask what he did today.  But even with that, with his pictures, and knowing him as well as parents do, we still don't know what it's like to be Richie.  

Every day, we pedal through keeping schedules, shuttling the kids and ourselves here and there, signing forms, paying bills, taking care of this and that, and it's so easy to forget them... and how they're seeing things.  

Do they see how much we love them? 

Do they see us love each other? 

Do they see us love people outside our home? 

Do they see us say we're sorry to each other as loudly as we said the things we're sorry for? 

How does a day look through their eyes?  

I wish I had a magic answer, but they closest I can get is to remind myself.  They need to hear that we love them, but they need to see it.  They need to hear that we don't talk to people rudely, but they also need to see us speak kindly, even when we think no one is looking.  And when we catch ourselves... or they catch us... in rudeness, unkindness, or flat-out thoughtless meanness, they need to see us admit we've been wrong.  

They need to see grace and mercy in our actions, not just to others, but to them.  And boy, is that hard sometimes. 

Thanks be to God for his gift of grace and mercy. 

Losing Thomas?

As I chose a shirt for Richie the other day, we talked about how his Thomas shirts and so many others are getting too small.  The shirts he's worn for a long time are almost in belly-button showing status.

"Guess we'll have to get me some bigger Thomas shirts, Mom!"

Then I didn't even really think and mentioned that he's getting big, and for some reason Thomas shirts are harder to find.  He followed with something I'd hoped to avoid.

"Yeah.  Lots of kids don't like Thomas though."

Ugh.  I was hoping you wouldn't notice.

You're right, kiddo.  And what a loaded statement.  Well, in this house it's loaded.  We are definitely a Thomas and Friends entrenched household.  I have no problems with this.  I grew up in a train town, and love trains myself.  Secretly I'd hoped my boys, if I had any, would be Thomas fans. Boy, did I ever get my wish!  We have a cabinet for the Take-N-Play kind in the big closet in the living room.  We have a train table for the wooden kind... not the cool Thomas kind because holy cheese, they want half a year of college tuition for one of those things!  The generic kind does quite nicely.

Then there's Trackmaster.  Those are Ryan's favorites, the ones he was banned from for about three years while he grew and developed and got over Hiro.  Click here to hear about that mess. Those are mostly kept on the train table among the wooden tracks, while a few remain in a random box in the living room.

We have two Thomas comforters, Thomas room stickers, Thomas hats, Thomas pj's, Thomas pillows, Thomas stuffies, and Thomas DVD's. Every time the kids get a new train, the one page colorful catalog that comes with it is cherished literally to pieces.  Even Maelynn can name almost all of the forty-plus trains on the last one.  As I type, they sing along to Thomas songs on Youtube videos made by kids and parents.  We catch ourselves saying that we're not feeling "very useful" today, and the kids are constantly saying "bust my buffers" or some other Thomas-ism.

Until now, we've been safely enclosed in our own little rail-driven world.  With one exception that I know of, that is.

Richie is in preschool again this year for just this reason.  I want to give him another year to grow in what it means to be Richie before I send him to an entire day away from me for that long every day.  He's smart, it's not that.  It is, however, that our everyday life is so different.

Yes, he will get picked on, if he's anything like his parents, even if he likes what the other kids like.  But here's the thing.  I don't want him to like something different just because some other kid said that what he likes is stupid.

His brother is eight and loves Thomas.  So our house will likely be steeped in Thomas for years to come.  I can't see that changing anytime soon, and not just because I shudder to think how many dollars we and our families have invested in all their gear.

I hope and pray that he will love what he loves for the sake of loving it, whatever he does.  That he will do his best because that is what he is supposed to do as a child of God.  Not for any kind of praise from other people, but because he should put something wonderful into the world.

That said, I also can't help but hope that he'll keep loving Thomas because it's something he and Ryan do together.  I'm frightened by the day when Ryan asks him to play... which is amazing to me, and quite recent... and he says no.  The idea that he would grow out of the one thing his brother loves makes me so sad.

Here's the other thing.  He will.

There will very likely be a day when he only plays with Thomas to be with his brother.  There might come a day when Ryan is still constructing tracks and sets and Richie is on to other things.

And that's where the reality sets in.  I'm not afraid of losing Thomas.  I'm afraid of the contrast when Richie passes his brother so very obviously, not that he hasn't already.

I'm afraid of more reality like the magical age of five.  When Ryan turned five, it was almost like everyone who thought I was overreacting by worrying about his development began to see that I might have a point.

In so many ways, Richie is our oldest.  There are so many things we've not experienced because of the autism rabbit hole phenomenon.  Even while Ryan grows and changes and "gets better" in different ways, the gap continues to widen between his age and size and the things folks generally expect from kids his age and size.

I worry about their hearts being broken, too, when someone notices that their brother is different.

I see how they love Ryan, and how Ryan loves them in his way.  How he says, "achoo" when he kisses his sister goodnight.  I see the sweet way he takes Richie's hand and says, "come play, Richie" in his newscaster voice.

And I hope they will always love Thomas.  I hope that as long as that is their way to Ryan, that they will love that little blue train and his friends right alongside him.

They will likely have their moments.  They will make poor decisions, just like they did this morning refusing to take turns.  I pray that we'll love them through their poor decision making moments just as much as we do in their good decision making moments.  And that they'll be free to grow in the grace and truth and mercy of Christ as they make all their decisions, from now to way past my exit from the earth.

Thanks be to God for the common thread... er, rail... that has bound them thus far.  And much prayer that the thread of their love for each other will grow stronger than the rails.

Hungry

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

~Nicole Nordeman, Gratitude

The other day, I got a little brave.  Okay, maybe I was feeling a little soft.  But after buying Maelynn all her dance things, I really wanted to get the boys something cool.  I know, I know.  We're not the let's-buy-a-toy-simply-because-we're-in-a-store-and-you're-so-cute parents.  That one day, we really wanted to get something for the boys, since Maelynn got all her new dance things.  

Weak logic, but meh.  

Anyway, I took the kids... all three... into Target after Ryan's first therapy session of the semester.  Maelynn knew she just got her dance stuff and was prepared to realize that was her treat.  The kids knew, via what I like to call verbal social storying, that we would look at some things mommy needed first, then head to toys.  

This kind of trip is not easy.  Worthwhile, usually but not easy.  I agreed to let Richie and Maelynn get one of those giant carts that drives like a semi, because they're so nicely encased and mostly together.  Then I just have to keep Ryan from knocking people over.  He's not trying to be rough and destructive, but slight motor skill issues combined with lack of knowledge of common social conventions like personal space, and things get interesting.  

So I'm doing battle with getting the tractor-trailer cart around the corner through the picked-over back to school aisle, and he gambols clunkily around the corner and almost into another lady's cart.  She was kind, smiling and doing her best to move out of the way as I apologized.  I would have backed up had she not offered, but hey... take help where it's offered, right?  

Just as something like "excuse us, so sorry" or one of its brethren began to fall from my lips, Ryan said, "Do you feel sick?"  

Uh oh.  But not a real uh-oh... he tends to use this as a stimmy phrase.  So to tell if it was a stimmy phrase or a real need to do something, I asked back if he felt sick in his tummy.  

The response nearly made me cry.  

"Mommy, I'm hungry."  

HE. TOLD. ME. HE. WAS. HUNGRY!!!!!!!!!!!!

I almost exploded with joy and pride!  He was hungry!  He processed that feeling and told me!  Okay, so his delivery was a little stunted through his brain going, "Okay, do we feel sick?  This seems like sick... uh, wait... this is hungry! I know hungry!"  

I wanted to grab that lady by the shoulders and say, "Do you realize what you just witnessed?!?!  My son is eight years old and has NEVER ONCE told me he was hungry!!!  Not in those terms!  You are witnessing history, ma'am!" but I didn't.  Okay, so I was a little worried about being banished from Target for frightening the other patrons.  

Instead, I praised Ryan in every way I knew I could.  "Yay!"  and "Great job!" and "Wow, son!  You told me what you were feeling!  That is awesome!"  came first.  Then, because I'm the mommy, I promised to get him a snack on the way out.  

The poor lady in the aisle who was just trying to be nice and get out of the way wound up backing out of the aisle and away from our excitement, which is cool.  I have no idea if she knew, as those of us who have been around kids like Ryan just KNOW by the way they behave.  But I know this... I was not expecting a breakthrough in Target.  My feet hurt and I was ready to go home.  I was annoyed and a little frustrated that I couldn't get Ryan to stay by the cart.  I was trying to keep my cool, stay positive, and get us out of there with another successful trip to a store under our belt.  

I haven't dreamed of my child saying he's hungry all my life.  

I dreamed of things like having children, my own home, my husband, success in my career, and so on.  My dreams and hopes were not at all along the lines of having my child be able to tell me he was hungry.  As a matter of fact, if you went back even ten years and told me I'd be so excited about this, I would not understand.  

Sometimes only desperation breeds true gratitude.  

Being without something you didn't even know you could be without makes that thing the most sought after, precious gift in the world.  Without an adjustment in perspective, the ordinary looks... well, ordinary.  But when it is truly brought to your attention that the things you walk around doing every day are not ordinary at all, but are specially placed gifts, perhaps even upgrades to our lives that are to be treasured.  

Think about what you're doing right now.  Your eyes take in the words.  The words from complete, coherent sentences (I hope).  The intricacies of the mechanics of grammar, coupled with literary nuances convey the message.  Your brain processes those words on a page to thoughts and thoughts to feelings, and maybe you turn to your friend next to you (or maybe your dog... it happens), and you can turn those thoughts and feelings to words.  Maybe you can also add personal experience to the mix, process the thoughts and emotions around that, and turn it into words.  I know I can.  

Thanks to the gift of my son, I'm thankful for that ability.  I'm truly thankful, now, for so many things I never gave a second glance in the past. 

Thanks be to God for lessons learned in hunger. 

House on the Hill

Every summer since my son was born, and some before that, we spent a couple weeks working on giving them a taste of the best parts of my childhood.  I wanted them to know these people and this place that gave me so many wonderful times, and had been home for as long as I could remember.

"We're going home," she'd say, when her friends or co-workers asked what Mother's plans were for the weekend.  And if my Mama thought it was home, I guess I assumed it was for me too.

She was right.

I was brought home from the hospital to the guest room in that house on the hill when I was born, as was my sister.  Before that, Mother and Daddy were married in the living room, a formal place that went largely unused other than Christmas day.  As for that, let's just say the house lasted far longer than the marriage had any hope.

So many summers I spent with Nanny and Grandad while Mom worked extra shifts in the big hospital in "The City," which is what everyone I knew called Oklahoma City.  Playing in the backyard, roaming the enormous front yard, rolling down the slope from the top to the bottom drive, splashing in my wading pool, playing on the coolest swingset ever... those before my father figured out that he could demand I go to his house for the summer were the sweetest summers.  I rode my bike all over that place... and refused to speak to Grandad when he took the training wheels off my Strawberry Shortcake pseudo-freedom.  I still remember so vividly his hand on the back of the seat, one on the handlebars with the promise that he wouldn't let go down in that huge front yard.  Almost the instant I trusted him, I turned around to say, "Hey, this is pretty cool!" and you can guess what happened.  He'd let go long ago, allowing me to fly across the yard on my own.

The house was a wonderland in itself for a little one.  There was this shag carpet that ate, I swear, all my barbie shoes.  There was this hallway that went on forever, with only night lights to break the darkness even in the day.  I remember starting at the beginning of that hall, running as hard as I could, sure something would jump out and grab me if I slowed.  Once a scorpion got me while I was tearing back there to see Nanny in the dressing room.  Those little suckers hurt!

Then there were the mornings Nanny and I would walk to Doris' beauty shop to get her hair done.  Usually we'd walk.  If it was raining or too hot, I guess, we'd get in the "big brown car" and drive down the twisty driveway, just a piece down the road, and up the dirt road to the little house next door. On the rare occasion they had someplace to go where a little girl couldn't be happy for the evening or the day, I went to her best friend's house to play.  I still have pictures of cakes and things Ava made me for my birthday.

And camping... oh, camping.  We'd pile in that old F-150 and follow the Good Sam Club wherever.  One of the life lessons Grandad taught that I still use with my kids I learned while sitting atop a pile of books between them in that old truck.  I'd read one, raise up, stuff it under, grab another, and sit down.  I think it was on the way to Sardis or Tenkiller when he said, "Crystal, we take you so many neat places, and you're missing it all with your nose in those books."

That's why we don't have a video system in my van.

Some of the closer lakes, and the farther-away.  I spent many an hour fishing with Grandad, pretending to crochet on my Cabbage Patch Kids lacing cards while Nanny and her friends did their crafty stuff in lawn chairs between the trailers, swimming, and of course, eating.  Holy cow do I miss banana pudding.

But not more than I miss those times and of course those people.

Those summers faded into the distance with the frustration of spending summers in Kansas.  My summer adventures were replaced with fear and boredom, the love of being the only grandchild hidden in my heart with an escape route I was too scared to use.

So we went, when my kids were little, to recapture some of that and make sure they remembered my Nanny and Grandad.  Things had deteriorated, including their relationship at that point, but they were still there.  There were still tiny flickers of the things I so loved.  Not the least of which was the fact that she adored my babies and doted over them just as she did me.

They got to feel her loving hand on their backs as they sat in her lap at the table.

They got to hear her laugh.  How I miss that laugh!

They got to taste her food, and of course, eat too much banana pudding.

They got to swim while she watched on from a lawn chair in a wading pool.

They got to go to the Runestone and play on the playground.

When she left us and Grandad deteriorated, it made me so sad to think they might not remember.  But I promised her.  I promised, through uncontrollable sobs, the hour before she died, that I remember everything she taught me.  Not the least of which was that these little ones before me will not stay little.

So we play, we try to remember to see things through their eyes, and we work on giving them good memories.  But sometimes I can't help but wonder if they remember her.

The other night, I asked Richie.  Just randomly, while I made dinner, if he remembered my Nanny.

"Yes!  I remember the big house and playing in the little pool in the back!"  

For some reason, all I could do is hug him and cry.

I guess the real reason I asked Richie, who was just two when she passed, was because I was afraid of asking Ryan.  His communication issues would likely hinder his sharing.  But lately, I haven't had to ask.  He's told me.  Over and over, he's told me.  And I know that he remembers and misses them.

"You want to go to the house on the hill, Mama?"

Me too, sweetie.  Me too.  You have no idea how much.

Thanks be to God for the memories in the house on the hill.

Twirly Happiness

The email finally came after a year of waiting.

There was an opening in the dance studio in town for Maelynn.  Once Daddy gave the financial go-ahead, I told her.  Immediately, she ran to find one of the dress-up tutus I made for her.  I thought I'd never peel her from the ceiling!

After lunch on Sunday, I took her to the shoe store to get her ballet shoes.  This kid was really paying attention on sign-up day.  As the dancewear came into sight, we noticed another little girl about her age with her mother, buying her ballet things.

"You don't have to get the tights.  They'll be hot and you'll want to take them off."  

Her teacher mentioned this to myself and another parent, and she caught it!  Maelynn's surprise advice cracked up the other mother, and really puzzled the poor little girl.  And of course, I about fell over!  Oh, that kid!

Then off to get the rest, all starry eyed and excited... and she was happy, too.  

And after much waiting, the first day finally came!

I've been a mommy for eight years.  She's my third child.  We've run quite the gamut in those eight years, and I suppose I thought it was no big deal.  Didn't even give the next thought to bringing a kleenex or ten.

I was the mom in her work clothes, all together and ready to sit and mess with my phone while my girl did her thing. I'd honestly wondered what I'd do to pass the hour.  

Then the music started.  Her eyes twinkled as she embarked on her new adventure, a part of ten other little ones her age, all excited about their leotards and completely amazed by their sparkly-countenanced teacher.

She adorably half-fell over when she tried to stand in first position.  With her tongue half-out she did her best to force her precious little limbs into the shapes her teacher modeled.

And I pawed through my purse for kleenex.

I couldn't stop smiling, and the tears of joy kept coming.  I didn't see it coming.   The sheer joy on her face, the way she gave me a thumbs-up as she caught my gaze... it was all amazing.

Aside from the fact that I've always wanted a little girl, and she was so excited, this was something I didn't have to fight for.  Just write the check, take her to the class.  No meetings beforehand.  No doctor appointments.  No books of paperwork and hundreds of questions.  Just the fun stuff.  It was simply wonderful.  She danced and twirled and tumbled in awe of her teacher, and I sat in awe of the gift of her.

It was heavenly.

Thanks be to God for the wonderful... and for my girl.

Finding Ryan

Sometimes it starts with a snap decision on our part as parents.  Other times, something we didn't know was coming in a new place rears its ugly head.  Surprise visits form candles, elevators, etc. have taken down many a good day.

This time it was a bad decision on my part.

Okay, so it was technically just not thought through.  I picked him up from CE, happy and stimmy.  Eric went the other way to get Richie.  Instead of going the long way, I took the way that takes us past the cafe-ish, kitchen-ish type area.

It happens in an instant. He throws on the brakes.  His eyes lock his entire body on the object of his obsession.  Quite literally, nothing else matters.

What could it be?  What could draw such devotion from my little guy?

The microwave.

He wanted to stare at the microwave.

In a flurry of if/then suggestions, blocking, and pleading in different ways and staying calm as best I can, back and forth with those blasted self-injurious behaviors, he plummets to the bottom.

The whole time... with every hit, with every grunt, yell, and thrash, I reach to find him in the only ways I know how.  Calm, measured first-then statements, clearly stated requests, calm and even as I can muster... did I mention I have to stay calm?

My child is falling into the mist, and I can't reach him.  All I want to do is reach him.  Grab his hand.  Pull him through and back to me.  But nothing I can do is working.  Not a thing.

It's a matter of minutes but it feels like hours.  His heart can't hear me.

I'd say I'd give him anything to get this to stop, but I've tried that.  It doesn't help.  Not in a down-the-road, you'll-be-sorry-later kind of way.  It just does. not. help. When he's like this, it's beyond his control.

In that moment, I don't care what you call it.  Tantrum, meltdown, fit, whatever.  I just want my son to come back. I want to reach him and help him.  Right then, I don't care if you call him autistic or a person with autism.  I don't care if he hits me on the back-swing... I don't want him to hurt himself anymore.  There are times I wish he'd haul off and smack me instead.

I wish I knew why he does what he does.  How I wish I could understand, so that maybe I could figure out a way to help.  What I wouldn't give to be in his body for a day.  To see through his eyes, hear with his ears, feel with his nerves.  Think with his mind.  Feel with his heart.

Just as quickly as it starts, it ends.  He turns on a dime, completely unexpectedly every time.  Sometimes from screaming to giggles in less than a second.  There may be a few aftershocks, just a few hits and moany-squealy-yells, but for the most part, he's just left sweaty and tired.

And I'm left processing what just happened.  What was it?  What triggered it?  What do I do the next time?  I've even come to putting notifications in my phone so that I remember to do something differently if I'll approach it at the same time next time.

I wish I could take his place.

I wish I could take his place and let him have my functional, although oversensitive and awkward, social understanding.  I wish I could give him my ability to say a cheery, "Hello" to any random person who asks without a prompt.  I wish I could make the hard things easy... or at least be able to understand them enough to really help.  He's not choosing not to tell me.  He just isn't yet able.

And I have faith.  God has given me the faith to see that Ryan's sufferings, mine, and everyone else's are what they are, and that the mountain of my heart's misunderstanding and upset can be moved with his peace.  Not mine, because I have none myself.

I still wish I could take it away.  Just the hard parts... the parts that seem to hurt him in ways he can't resist.  But autism, like life, is not a buffet.  You get the delicious mac and cheese and the brussels sprouts, and you have to eat them all.

There are no platitudes that really help here.  Nothing makes this okay, and nothing certainly makes it enjoyable or desirable.  But I will tell you that if I can hang on and by the grace of God be calm, holding myself together while Ryan makes his way back to me, it's worth it.  He is worth it.  His electric, captivating smile and newscaster-tone speech, his giggle, the way he draws me into repeating one random syllable with him over and over until he loses it in laughter, the breathy way he says, "I love you, Mama" which I know he worked hard to craft, the amazement at his drawings and his sweet stim... they are... he is... worth it all.

Thanks be to God for him... the good, the bad, and the loud and scary.

Non-Routine Routine

We live on routine.  If you have know us, by blog or personally, for any length of time, you know this. From sunup to sundown we're scheduled and timed even down to the minute.  If there aren't time limits or certain times to do things, it's order.  The order in which we do things is crucial.

This is one of the ways we don't really realize what we do until we need someone else to do it, or we need to change it in some way.  Or when we start to try to tell someone what life is like here, or how things go.  Or why we just don't do something.

Then there are times when something just happens.  You go through life filing, spacing, cramming, and multi-tasking the minutes to make sure the days when he's here are unchanged and routine, pretty much... then something happens that shoves a monkey wrench in the usual.

It happens more than I'd like to admit.  Still, even being who he is, it seems like the larger the monkey wrench in my eyes, the easier it is for Ryan.

I think I mentioned I get to do about 45 minutes of teaching every day for a short while.  It's a blast and I'm completely addicted again... which isn't necessarily good because I need to be doing what I'm doing.  Anyway, I walked out of the ensemble room where the beginning clarinet class happens, forgetting that the third grade music class is in session right then.

I looked up, and before I could even think, I heard, "Mama!"  There was my precious, stimming baby boy, as baby boy as you can be at 85 lbs and as tall as my shoulders.  He was so deliciously delighted at seeing his Mama.

Gotta be honest, I felt like a rock star.  He looked around after he saw me, till his eyes met the aid from his class. With her nod, he jumped and ran, throwing his arms around me, still grinning ear to ear.  After peeling him off and into his seat, one of his buddies had to have a hug, too.  Then another, and another, till the whole life skills class had a hug from Ryan's Mama.  The kid next to Ryan insisted that I give their aid a hug too... thankfully I know her!

In just a couple of minutes, it was time to go. I was expecting to have to take him home with me.  He sought me after I'd gone back into the ensemble room, giving me one last hug, even telling me he loves me, and with much encouraging went back to be the line leader with no problem.

Go figure.

Then today, on the way in the house, I needed to take a sudden but important call.  The afternoon was nearly flushed.

During his speech session, I thought he was going to break the kitchen table or his hand with the pounding and screaming.  None of the usual sets of wording worked.  He spiraled into a rage of confusion, and all I could do was stay calm and try to help him out.

We do our best.  We change what we can, and try to help him through the rest.  The rest, when defined as something we knew could set him off in the first place, is hard to swallow.  It feels like I caused it. Because well, I didn't have to answer the phone.  She's a very understanding lady and I could have called her back.  It would not have been a problem.  But rather than get in the house and follow the usual procedure till Ryan was comfy and through the important transition from school to home, I answered the blasted phone.

It was depressing.

Here's the thing.  We do our best, but we can't control everything.  Even within the things we can control, we will make a bad decision, especially a snap decision, here and there.  Sometimes it'll end well, others it'll end badly.

That's just the way it is.  Sometimes it ends in hugs and love and amazement, sometimes it ends in regrets and apology and internal promise to do better next time.

In it all, there is life.  One step forward, two steps back... then two steps forward, one step back.  Little by little, we inch along together. As we inch, forward or back, we must remember that there is a sovereign God who is not surprised by the things that surprise, or even rock, us.

Thanks be to God for being who he is.   And for that embrace in the music room.  That was pretty amazing.  

No No, Yes Yes

Don't they look happy?

They're being entertained by their big brother, who was reading this:

So it's not the greatest piece of literature.  To tell the truth, the writing consists of two riveting words.  "No" and "Yes" are the only words needed.  

Aside from the greatness of teaching my kids that they shouldn't pick their noses, play in the toilet, eat dog food, or hit their brother over the head with a hammer, RYAN WAS READING IT TO THEM.  

Ryan was reading to his brother and sister.  He was giggling with them, using proper voice inflection (for his usual newscaster tone, anyway), and allowing them to snuggle him.  He was telling them, in full-sentence descriptions, things I used to say to him while reading this book.  He read it just like I did, almost to the word.  

Yes, it's likely mostly echolalia.  But look at that face.  He was engaging them, and he was enjoying hearing their responses.  He would even do something again if they laughed hard enough! 

There are days I wonder how I'm going to do tomorrow.  Then there are moments that show me exactly  why I wouldn't miss it for the world.  

Thanks be to God.  

If you'd like to have a copy of Ms. Patricelli's great little book, click here.   I don't know her, but her book sure is cool!

Boats and Lights

This is really Saturday morning's post... but I took Saturday recovering from what you're about to read about.  So here ya go... pretend it's Saturday.  

“So we beat on, boats against the current, borne back ceaselessly into the past.” Nick Carraway, from F. Scott Fitzgerald's The Great Gatsby

Last night was a hallowed time in the state of Texas.   I don't know when the tradition began, but I'm sure it will continue long after I'm gone.  Entire movies and television shows have been inspired by it and the passion that surrounds it.  

And now, our little version of Texas Friday Night Lights.  

It's all about the boys and the ball and finding that end zone more than the other guys.  It's a really big deal down here.  Pretty much everyone is at the game on Friday night in a small town.  But there's a subculture that I obviously will never think gets enough press, and it was my first love.  Texas, ladies and gentlemen, is a band state.  

So, to share this tradition with our kids, we go to the home games.  Richie and Maelynn love it and they're so easy to deal with most of the time.  They just want to run and play with their friend, the head director's youngest son.  That's where Richie wished he was when I took this one:

And you can see where Ryan starts.  At his drum, playing along (well, mostly) with the band. Back behind, so maybe he won't interfere too much.  

Then the mascot came over.  Yes, you are seeing a goat.  We are and will always be the Groesbeck Goats.  No, I have no idea why... but I like it!  It's unique.  And it kinda rolls off the tongue.  Say it with me..." Go Goats!"  Nice, right? 

Can I give you a hug?  Hmm?  Richie wasn't into it at all, but sister loved some Billie Jean!  Yes, the goat's name is Billie Jean.  Or Billy Jean.  Not sure.  But hey, like I said... unique.  

This was toward the middle of the first quarter.  Then Ryan discovered that he could mess with the cymbal rack.  So much shiny, so much temptation.  I wanted to play with it too, but I'm a grownup and I have to do better.  And I'm the mommy, so I have to teach him to do better.  So my night began running between the cymbal rack (I still want to play with that ice bell) and where his practice-pad covered snare drum.  

Yeah, he was playing me.  

He figured out that if he went to the drum and started half-hacking the rim with his sticks, I'd come tell him to stop.  And while I was going back to the drum, he could make it to the cymbal rack to get one delicious, stolen "ting". 

It was pretty much down hill from there as far as his behavior went.  I did get to visit with some great people during the third quarter, since the band has a bit of a break then.  That time was good, and half time was great.  These ARE band directors' kids, and they do know that half time is what we've worked for, so there ya go.  

Save a bit of time to visit with some sweet ladies, and the rest of the game was spent running after Ryan.  

We sit in the end zone, and there's this huge half-circle of pavement as wide as, well... a football field.  Ryan decided that the drainage grate around it looked like a track.  Guess what?  He ran the length of it the rest of the game.  Back and forth.  Around and around.  

If you know anything about Ryan, you know that he's not terribly good at sensing danger.  He'd have run out onto the football field with the boys playing about fifty times that night if I hadn't stopped him.  

When I did finally decide I couldn't run after him anymore, things got ugly fast.  

He screamed and hit.  He demanded ice cream.  With all the intensity he could muster, he balled his eight-year-old, puffy little boy fist and pounded himself, his face twisted into tight, frustrated fury.  I have to get through a small town football crowd with him in this state, and have to hang onto my five year old and three year old, too.  

On the steep stairs at the edge of the concrete home stands, I finally pick him up in one arm, wait for the other two to follow, and keep moving toward the gate... trying the whole time not to think about having to walk the length of the field plus half a parking lot to get there.  I actually muttered, "never again" under my breath as I fought to not melt down right there with him. 

Once we're at the van, I do the usual.  Get the littles in the van and safe, then make sure Ryan understands that screaming and hitting are not allowed inside.  Three times I made him get back out.  

By the time he was done, leaving early didn't help the traffic issue.  I was about to flop over and cry when I mindlessly unlocked my phone and checked my email.  

Someone from the other side of my life under Friday Night Lights left the most amazing, meaningful encouragement.  

And I straightened in my seat. 

I wiped my face. 

I smiled.  

And I knew I could... would... do it again.  

So this morning, I feel like I played football last night.  My head is pounding, I'm sore, and ready to take about a month worth of naps.  But we will do it again.  If I quit now, what's to become of us? 

We keep going.  We keep asking forgiveness, trying again.  Seeking to improve, yet knowing that there isn't much hope of never experiencing this frustration again.  It doesn't sound like much of a fight, but when the small-looking fight stops, changes, and dictates your everyday, it's all of a sudden a war. 

Thanks be to God for the letters from home that give us what we need to take one more step.  

And thanks definitely be that there is no home game next week.