Wednesday, December 14, 2011

A Boy Like Me

"Was he a boy like me?
Did he bounce on daddy’s knee?
Did he play games to make his mother smile?
As I place the final piece inside the manger scene
I wonder if he was a boy like me."

Ryan's kindergarten Christmas program was last night.  We loaded the van with all the kids after dinner, which in itself was confusing for the star.  I promised him a treat after the program, tried to talk through as much of it as I knew about (the process, not the program), again social story-ing my head off.  Once we reached the school we had to walk a while from where we parked, and the whole way to the door Ryan was jumpy-stimmy-tickled.  I mean WIRED for sound!  So excited to be there.

And I was so relieved.

The crowd was huge inside.  I took Ryan to the music room, where one of his many adult friends at school met him at the door.  S, we'll call her, smiled and greeted Ryan, and I went back to find Eric and the littles. We had a bit of a wait, which was interesting with little miss wiggles in the umbrella stroller.

Now, I was proud of Ryan!  He got dressed in a package costume, and although he wouldn't go on stage until the end, he was there.  And dressed!  It took a long time to find him, since he wasn't on stage, but when I did, he took my breath.  My baby... my little boy.  The more I thought about it, the more I realized how huge that was for him.  There were other children who had speaking and standing parts who were a bit nervous, too.  I wish I could say this was the first time I teared up.  You know, welled up, choked up, got teary-eyed... but it wasn't.  There's something about Christmas... especially where kids are involved... that makes me lose it.

So as I desperately tried to snap pictures (which were all terrible), I had to dig in my purse for kleenex.  As I pawed awkwardly through my purse with one hand, I finally understood.  Every time I performed in any way, whether is was choir, concert band, marching band, whatever, Nanny, Mom, and usually Grandad were red-eyed, sans makeup, and picking kleenex off their faces every time we got through.

Finally, for me, it makes sense.  Of all the things we go through with special needs, all the extra time as a band family, all the challenges my family has had in the past few years as we cared for our sick and mourned our losses, you know what makes me choke up the fastest?  It's a combination.   The wonderful things of my past holidays that I get to pass to my children, and the difference in their childhoods and mine.  I watch their sweet faces brighten when they see the lights, teach them the love of Jesus and why we give,  and every time I hear my little princess bubble over with a whispery, breathy "oh WOW!", my heart overflows with gratitude for everything.  But ultimately, it's amazement and wonder at the workings of God's perfect plan.

He used and uses things all the time that look imperfect... even useless... to us.  Have you recently dug through Jesus' family tree?  Do you realize how God chose to send his only Son to the world?  All of my children were born in a hospital.  I know people who won't even consider having their kids in any hospital that doesn't have an NICU.  All that's fine, but consider that environment, then consider a barn.  Oh, you're in advanced labor? Here's some clean hay.  We won't even go into how socially forbidden it was for his mother to be pregnant and just betrothed.  She could have... and probably would have... usually been stoned to death upon the world finding out.  And it fascinates me to no end to think of how Jesus may have been as a kid.  He had to potty train, eat, learn manners, and grow up in this world... but all without sin.  If you can wrap your mind completely around that, I'd like to borrow your brain.

This Christmas season, I choke up when I hear so much as "Jingle Bells."  But it's not the song, and it's not even the fact that my kids' childhood experiences are so much more stable than mine.  It's not that it's my baby on the stage.  It's the wonder of it all.  It's the fact that Jesus was a boy like Richie.  Like Ryan.  He played and giggled, made his mother laugh.  I'm so grateful that I have children to watch and help grow.  And it's just too amazing, wonderful, mind-bending... that He was a boy.

Why in the world a boy?  Little boys are great but they're hardly the warrior-like king Israel expected. He came to Bethlehem on a donkey, in the womb of a woman being looked at as an adulterer in the community.  With a father who was likely being looked at through the same lens.  Jesus could have been born to a Queen.  He could have been born in their present-day version of one of the state of the art birthing rooms of our day.  But no... God isn't interested in our perfect, wrapped up with a bow versions of how we think life should be.  He's interested in nothing less than His best for us.  He's interested in us trusting Him and learning to understand that we shouldn't panic if something doesn't go according to plan.  We can't see what He can see.  We don't know what He knows.  I can speculate, study, and search and ask questions, but I will never fully understand His choices.  Every year I see a new facet of this situation... the Prince of Heaven in an unmarried mortal womb.  Brought into the world not just how all other people are, but among the animals in the floor of a barn.  The perfect picture of humility and grace.  Of love and caring,  sacrifice and giving.  Jesus came to save us, absolutely and without question.  But I also believe He came to feel our pain.  Our frustration.  Our excitement.  Our happy, contented laughs with friends.  Our love for our family.  I'm willing to bet He also saw the temptation to keep up with the Joneses, and I know He saw, through growing up and living among us, broken relationship.  I know He saw how hard it is to be different.  To be the one or two moms in the audience drying tears simply because their boy was dressed as the gift that he is.

Ryan made it through the performance, and as I made my way to he and S through the crowd, I saw him jumping and stimming when he saw me, hands flapping with all his might.  I think he was proud of himself, and just like every other kid, he wanted me to be proud.  As he jumped into my arms, S told me that he kept asking to go to Mommy or Daddy.  I hugged him tight, told him how very proud I was, and we went to find Daddy.  And I've never been more happy to sit in line for ice cream, or more tickled to hand him his prize.  And as he finished his ice cream, he stimmed a bit, looked at me, and said "Christmas!"  Then, as I was wondering what he was going to mention about getting a gift, he said "It's about Jesus."  And I'm so very grateful that it is.  That He was a boy like Ryan, Richie... and me.

"He saw a boy like me
He bounced him on his knee
They played some games that made his mother smile
As you place the final piece inside your manger scene
They wondered at this boy They gazed upon this gift
In a boy like me"

Now grab some kleenex for the whole song, "Was He A Boy Like Me", sung by Junior Asparagus

Sunday, December 11, 2011

Letter to Me...

This is to everyone who ever had one of those days. A little more than just one of those days.  To anyone who has felt the frustration of feeling powerless to help or change anything. The days when that powerlessness has you on your face without the strength to beg for help... and maybe you're at the point where you look around and can't see through the excruciating fog surrounding you to the people that want to help you, love you... Who want to seek to truly understand you and your situation and extend a hand to help you up. Worse yet, maybe they're just nowhere to be found. You're in a place where it's too hard. Too much. The fog has closed in to the point where there is no seeing a light at the end of the tunnel. No hope in sight. Just blackness. Your pain... your child's pain... your loved one's pain... rings in your ears and permeates your soul in such an all-encompassing way that you can't imagine living another day of this, much less a happy one.

Do it.

You heard me.

Get up. Take a deep breath. Do something.  Just keep going.  Keep going, doing, and being.  Even if all you can muster is the energy to do the dishes or pick up some toys.

If you've never done so, or haven't in a long time, or maybe just even haven't thought of it this way, ask God for help... to bless your effort.  Ask Him for mercy, for grace, for a clean slate.  All you have to do is accept the grace and mercy of a clean slate once you've asked for it.


Believe that there will be another good day.  Another good feeling.  Another laugh.  Your heart will not hurt forever.  There are plenty of good reasons to go on.  Never, EVER make an irreversible decision based on that vacuous feeling in your gut.  Believe that those plans and promises apply to your sweet children as well.


Trust that God has good plans for you.  That He hasn't left you for one moment.  That He sees and hears your tears and sobs, has felt your anger and your pain.  Trust that His words are true, that they are His.  Turn to Psalm 51, Psalm 71, or just start at the beginning.  Read them out loud.  Wail them out loud.  Write your own.  


Remember that God sent His Son... not so that He could show off and make Dad look good, but so that we might never be separated from Him forever.  Like we tell the kids, He took your time out for every bad thing you ever did.  He also came so that we might have the Holy Spirit to guide us and intercede for us when we can't put our pain (or even our joy) into words.  Remember also the times He's brought you through.  He walked this earth and experienced it all so that He could understand how hard today is.  How hard yesterday was.

I'm not promising that you will never feel this way again.  I wish I could, but I can't.  As awful as you feel right now, there is someone... at least one, likely more... who needs you.  Just to see your face and hear your voice every day.  Who, without you, would feel lost.  Incomplete.  Destroyed.

There is no quick fix to this.  No amount of food, alcohol, stuff, or people will make this okay.  So what does that leave?

Place your trust in the Lord, our God.  Believe that He is still on the throne.  Believe that whatever it is does not surprise Him.  Trust in... rest in... the sovereignty of God, and remember His love for you.  It absolutely cannot be bought.  Not with money, impressive status in the community, in the church, in volunteer work, not with education or any amount of "good-ness" we think we've achieved.  He loves us the same reason we love our children.  He sees our efforts.  He knows our hearts.  Where others misunderstand or twist our words, He sees straight to the soul.  You need only stretch your hand out and trust.

Why believe?  Why trust?  So many folks say, even in the blogs and chatboards of the autism community, that your faith is ridiculous.  They make light, even make fun of the things I've reminded you of.  Why bother?  After all, it is easier to just be angry.  

It's worked before.  He hasn't let you down yet.  You're still alive.

So get up.  Purposefully place your trust in Him.  Remember that He has your honor, your well-being, your everything in His hands, and can see more than you can.  Though words, looks, omissions, and downright thoughtlessness is horribly painful, you are not destroyed!

Hear what God has to say through Paul, someone who knew persecution, frustration, hurt, and unfairness.

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. 8We areafflicted in every way, but not crushed; perplexed, but not driven to despair; 9persecuted, but not forsaken; struck down, but not destroyed; 10 always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. 11For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. 12So death is at work in us, but life in you.
 13Since we have the same spirit of faith according to what has been written, "I believed, and so I spoke," we also believe, and so we also speak, 14knowing that he who raised the Lord Jesuswill raise us also with Jesus and bring us with you into his presence. 15For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God.
 16So we do not lose heart. Though our outer self[c] is wasting away, our inner self is being renewed day by day. 17For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.  ~2 Corinthians 4:7-18

You are more loved than you know.  You are hurt, but not left for dead.  This will last for a time, but the sun will rise tomorrow, and you with it!  May the joy of the Lord be with you... not just happiness, but JOY.  The deep-end of happy.  The Job kind of joy and gratitude that transcends feelings and loss... that joy that comes from out of nowhere to make you smile before you realize you're doing it, or even though the walls crash down around you!

Thanks be to God!

Friday, December 9, 2011

Truth from the Island of Misfit Toys

This morning, after taking Ryan to school and removing coats, etc. I walked in the living room and started "Rudolph the Red-Nosed Reindeer" for the kids.  You know, the old stop-motion one.  I had planned to turn it on, then once the kids were happily playing and watching, I'd go sort laundry.  Then this three-year-old boy with curly blonde hair looked up at me.  He completely ruined my plans with those big, blue eyes. So I sat down on the couch, computer to the right, Richie snuggled on my lap, thinking I'd do some quick email checking while we watched. I opened the notification of a new blog post from "A Diary of a Mom".

It seems that we live in a world where not just other people think different is wrong.  It seems that we live in a world where parents kill their children brutally to avoid being "ruined".  You can click HERE if you'd like to read the post I read.  I must warn you, it will break your heart. It rocked me.  It shook me.  It broke my heart.

It called me to action.

I come here every now and again, and in my opinion not enough, not to impress you with what little writing skills and creativity God has given.  I come here to offer hope.  I come here to explain.  To write my own little message in a bottle to not just help others who do not understand what it's like to live being different, but to offer some comfort... to share my experiences, good and bad... with parents who have kids like ours.  The hope is that my little offering will comfort someone, make them feel a bit less alone and isolated even for a moment.  I have been there.

I have felt the pain of throwing out all your expectations... some you didn't realize you had.  I fight every day in different degrees to enjoy these three babies and this life.  Folks, in case you hadn't noticed, I don't know anyone who has it easy.  Those we think should be the happiest, by earthly standards, are often the most broken.  Just click on over to the entertainment section on any news source.  You'll see pain in staggering amounts.  Broken relationships, illness, death, bankruptcy, greed, anger, hatred... no matter how it's packaged or Hollywood-ified it's still pain.

Please don't think I'm trying to lessen the difficulty of those of us who live on the spectrum.  I'm not.  I live there too.  But honestly, my littles are different, too!  I feel like at times I've given birth to mountain goats, banshees, and future MMA fighters.  Where did they get this stuff?  I mean, Eric and I are... well, we're pleasantly boring!  Then, at the risk of sounding egocentric, look at me.  I've always been different... a bit out there, a bit off the mark. Never one too concerned with what everyone's wearing, doing, being, watching, etc., probably to my own social detriment.  I'm content in jeans and a t-shirt in the summer, a long-sleeve t-shirt in the winter.  I'm one of those annoying people who wouldn't go see "Titanic" because everyone else was.  Socially clueless by choice, maybe?  Anyway, I've had people try to kinda rescue me from my awkwardness.  In some ways those people have helped a lot! In others, it just hurt to be told I was so different that I needed someone's help to be acceptable.

But even when I thought I'd conquered the need to be like everyone else... my "look at me, God, I took care of that... aren't you proud" moment ended last spring.  The magical time when that baby boy is a little boy comes with a price when you have special needs.  All of a sudden he's bigger.  Harder to handle.  When the rest of the kids are running around playing during adult meeting time at church, he's still in need of the assistance you'd give a 2 year old.  So I found myself on the playground with my son, entering a crossroads.

"But I just want to be in church, God.  That's a good want.  That's what You want for me to have!"

*shakes fist at sky*

No, sweet one... that's what you thought I wanted.  I really just want you to be open to ME.  My will, not yours.  Even when your will looks like it should be right.  I want you to learn to wallow in the joy I have given to you, not your disappointments.

That short-version of the answer I received over months of agony was life-changing.  Last spring was the beginning of stripping away everything, rethinking what we believe, what we want our kids to know, and placing back the things we need.  Along with that was scrubbing all the preconceived ideas from our hearts and minds.

Which ones, you ask?

Kids should be potty-trained by at least age four.

Kids should be able to sit in church, color, and make a minimum amount of noise.

I should be in church whenever I can, signing up for everything offered to truly be a good Christian.

In order to have a great marriage, we should have a date at least once a month.

Said date should involve a sitter, dinner, a movie, or something similar.

The list goes on and on.  There are things we've had to rid ourselves of as preconceived expecations that I cannot put into words. This means that when Ryan is making gutteral waa-waa-waa stimmy noises, giggling like there's no tomorrow, really acting... well... weird, I have to join him.  Stop a minute, see his sweet baby face, the joy in his eyes, and though I don't understand it, what will it hurt to giggle with him?  Repeat after him, even?  In the appropriate setting, what's the problem with that?  Nothing.  What's wrong with making our son feel loved and accepted in his own home?

Embrace it.  Embrace the different.  Help him understand the world.  Help the world understand him.  What's harder about him than the other kids?  Learning how he loves.  How he feels love. This morning, when I repeated his stimmy noises after him, I wish you could see his face.  His eyes brightened.  His smile was huge.  He clumsily fell into me with complete abandon, wrapping his sweet arms around my neck, humming.  I embraced him, in his world, and maybe just this once... but he embraced me right back.

In a moment we were back to the futility that seems to be getting ready for school.  But I was more refreshed, more ready for it, because I took a moment to feel his heart.  To see him as a flawed, clumsy, gangly human just like me.  Doing the best he can, whether his best is good enough by worldly standards or not.

So here I sit again, hoping and praying that God will bless these words, flawed though they are.  That someone might find hope... be inspired to keep going through one more meltdown, one more trip to the hospital, one more disapproving glance by the others around them.  I've felt them too.  I've spent a lot of time in my house, wishing I could shut the doors and protect us from getting hurt again.  I've felt the pain of different.  I've been angry because what I want isn't so bad... just for my son to have peace and be able to communicate, to know danger and run from it, to understand some social nuances like not laughing at crying and when to not run up and hug random people.

Yes, what I wanted or didn't even realize I wanted sounded good.  It was hard to let go of.  But friends, I stand here on the other side, promising that it's better over here.  No, it's not always easy.  Yes, we still have meltdowns.  I still want to help us overcome.  I still want there to be a prevention for Autism, for there to be better treatments and more understanding.  But I have to live here.  I know it's not a popular idea, but you can choose happiness.  You can choose to get up and try again.

If you can do nothing else, you can share your story.

As I finished reading that post on Diary, I glanced back up to see our familiar red-nosed friend enduring suffering at the hands of his father, who just wanted him to be like everyone else.  To cover up his red nose, because comfort isn't near as important as self-respect.  Shortly after seeing the other reindeer making fun of Rudolph and seeing him banished from the reindeer games, Richie's sweet voice floated to my heart as he turned to me and said "That's sad, Mommy."  

Dear Lord, please help us all to embrace our kids' red-noses.  Help us all to see how amazing they are.  How needed they are in this world.  Help us to reach out and offer hope to those who struggle with how different they or their kids are. Because it isn't easy, Lord.  Please help us. Please "create in me a clean heart, O God, and renew a right spirit within me." (Psalm 51:10)

Thanks be to God, the giver of all good things!

Thursday, December 1, 2011

The Dropoff...

Just got back from dropping Ryan off at school in his jammies.  He's off to Polar Express with his kindergarten class.  It's all he could talk about for days!  He wanted me to go, but y'know... duty calls with the whole two other little kids thing.  He bounded out of the van, bubbling over with excitement at the thought of seeing Santa at the end of the trip, and getting to talk to his friends the whole way to the train.

You didn't buy that, did you.

Me neither.

The truth is, the same child who loves trains so much we are covered in Thomas, and every time we visit his grandparents in the city we have to ride the commuter train, even to go no where but the end of the line.  He refused to go to school in his jammies, emphatically replying "NO!" when I asked if he'd like to wear them to school.  And yes, I asked as part of the social story I talked him through a ton last night and this morning. He was confused and a bit upset... I was having a hard time keeping him together as we got ready for school.  He's used to wearing jeans and a long-sleeve shirt this time of year, but I at least wanted him to sorta be in comfy clothes, so he wore his school sweatshirt and sweatpants.  The outfit was really more to help him, just in case he noticed the other kids were all in their pajamas and felt out of place, as part of the whole Polar Express thing.  Not that he'd ever tell me.

The truth is that I would love to go on this trip.  The problem, other than the care of the two littles, is that when I go on a trip my presence throws Ryan off so badly that he can't function.  The first and last time I tried to help out on a trip, he screamed the whole day.  Yes, the WHOLE day.

So as I drove him to school, I repeated over and over "I stay with my teacher."  He repeated it back, as if to say "Mom, I'm going to have fun.  Just let me go!"  The only way he'd expressed his excitement was to say "You WILL go on the train!" followed by his happy hum-and-stim combo.  Peeling him out of the van in the nicest way possible, the lady who usually helps him out every morning said "Good morning, Ryan!  Ms. M is going with you today... let's go find her."  So simple.  Just finding conversation with my boy.  A way to show him she sees Ryan, not a diagnosis or a warm body.  But to me, it's everything today.

I knew we'd talked about his having an aid for trips.  But the whole way to school I was panicking.  Driving around the traffic tree (which is not near as cute as it sounds) I told myself that it wasn't too late to keep him home.  I could easily see him stimming on a train wheel as it pulled away and... well, losing him.  It's almost happened at the "people train" when we took him for a ride.  It can happen in a heartbeat.  "I could text his teacher, telling her that he's with me... she'd understand" I told myself.  But those few words the car-rider helper told me made a world of difference.

I pulled away from the school and down the rest of the tree with tears streaming down my face.  If you know me in real life, you know that as of late I practically can't hear a sleighbell without tearing up.  A children's choir in the mall singing "Jingle Bells" and I'm gone.  But there was something different about this.  I could choose at this moment to let the anger for the things that are hard for Ryan and all other kids with ASD's take a bitter hold in my heart.  That's the easiest thing to do at the start, but it finishes with a cold, hard, stale heart.  Or at the least unhappiness... which again is just not acceptable.

Have I not commanded you?  Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.  Joshua 1:9

See?  Being frozen by fear is not acceptable.  I have done my best as Ryan's mother to be a good steward of him... that is, I've done all in my power to keep him safe and put things in place to carry that on when I'm not around.  So the hard part is pushing him out of the van into the capable hands of another, knowing that he's going to have wide-eyed, stimmy, hummy wonder all day long.  The bus ride to the train alone is enough to send him over the euphoric edge.

As I left the school parking lot, I stopped to let a little pre-k looking boy cross in front of me, with his mom.  He was all decked out in his flannel PJ's, complete with blue furry-lined hat... you know, the kind with the cute ear flaps.  This is where I'm tempted by jealousy.  Anger.  Frustration that my big boy couldn't stand the different-ness of wearing his pajamas to school.  His mama gets to go and see his wide-eyed wonder.  All I can do is imagine.  I notice that she's flustered about something, just doesn't have a countenance that screams "yay, I'm about to go have a great day".  It's then that I'm tempted to go to everyone's favorite world-soapbox (you know, Facebook) and place a well-meant (yeah right) warning about how she should all just cheer up and shut up about whatever is bothering her because you know what? She gets to do something I don't.  And dangit, she should be grateful.  *insert folded-arm-huff and pout*.

But the truth is, I have no idea what she's been through this morning, much less through her whole life.  I have no idea what her name is, much less what things have shaped her heart... or torn it to shreds. I don't know.  Even if I did know her, I still can't know these things.  Even if I THINK I know, comparing her experiences and hurts to my own is dangerous.  No good can come of it.  As Jess from A Diary of A Mom tweeted recently, "#youmightbeanautismparentif you've learned that human suffering is not a competitive sport."  And it's not.  But too often, we think we're doing good by cramming our judgment down others' throats... and tragically, too often those throats are already raw and bloody from swallowing their own problems.  Can you say "not helping?" And even if I don't say anything out loud, letting anger and bitterness grow in my heart is not helping me, my kids, my husband, or anyone.

What do I want to choose to do instead?  Pray my pain, my fear, my hurt... and remember that I get cool stuff others don't.  For example, every day for three and a half years I've picked up Ryan and asked him if he had a good day, what he did at school, and usually I get no answer.  Tuesday, he clambored into the van and I threw out a "did you have a great day Ryan?"

And you know what?  

He said "Oh YES!"

Who else can be so excited over two simple words?  Not that many of us.  It's hard.  There's very little of Autism that isn't... no matter what brand you have.  Challenges are challenges.  Whether your child has special needs, medical needs, or not you have challenges.  Mine are mine, yours are yours.  Oh, it's hard all right... but we can make it harder by adding bitterness and anger to the mix by insisting on playing the one-up game.  I know it can sound trite, but let's be kind to others and focus on what we HAVE.

And I don't know about you, but I have a LOT.

Thanks be to God, the giver of all good things!


Sunday, November 13, 2011

A whole year already...

My apologies to anyone coming to this web address for Autism-related speak.  This one's not terribly Autism-related, but it bears sharing.  Thanks for understanding!

It's an anniversary today, and I'm not sure what to do with it.  

One year ago today, if you count these things like the US does Thanksgiving, I walked back to change my baby girl's diaper in the guest bedroom at Nanny's.  Once she was clean, dry, and smelling sweet again, I decided we girls would go talk to Nanny some more.  By this time she was in her bed all the time, beyond thin and frail, not able to speak much at all.  I'd just about an hour before sent Eric back on his way home so that he and Ryan could be in school the last week before the Thanksgiving break.  Walking through the dressing room and bathroom, I stood an looked at her for a minute, with my little girl on my hip.  As I  stopped to admire her for a second before entering, I did a double take.  Is she breathing?  I ran closer.  

She wasn't.  

About an hour after, through tears and uncontrollable sobs at her bedside, I promised I'd take care of everything for Thanksgiving, I remembered everything she taught me, and how much I loved her, and appreciated everything she ever did for me, she left.  As I posted on Facebook after we'd called family, "Nanny was a lady, and a lady always knows when it's time to leave."  (stolen from Fried Green Tomatoes)

I can't believe it's been a year.  A whole year.  I will not tell you she was perfect.  I will not say that she had no issues, no problems, no shortcomings... but I will tell you that she was amazing.  She was giving, funny, tough, smart, loving, and just plain cool.  There's so much she did for me, and last year I wrote a ton on that here.  A year later, I can honestly say that my heart is still broken for her.  

I remember standing around with my Mom after she passed... I mean right after, when the hospice nurse came to do her thing.  There was a great sense of relief.  And, as with everything else in our family, we dealt with it with humor.  Mom had gone to school with the hospice nurse, and even when the funeral director came to pick her up, I'd been in band with his son, and I'm thinking Mama or my uncle went to school with him.  When you've lived in a small town for fifty some years, everyone is family somehow.  And you know, it's pretty cool.  But still, there we were... our beloved matriarch, friend, and for so many of us, our stability... was no longer with us.  I can't tell you how strange it was or how oddly hollow it felt.  Honestly, I didn't lose it until we pulled up to the funeral home.  I had the gray pants suit I knew she loved in my lap, along with shoes, jewelry, and a nice pink shell (which Bree and I later went home and traded for a pinker pink... we found the perfect casket and the pinks didn't match).  When my aunt Gladys Mae (one of Nanny's sisters) pulled up to the funeral home, I couldn't get out of the car.  Yup, I picked the perfect time to lose my marbles.  

Eventually the family managed to scrape my pieces back together and we got everything done.  The casket was just too neat.  It even had rosebuds on it!  Once we were through there, we went to the flower shop.  I'm still grateful for how sweet everyone at Bullard's was... Miss Marty really made things just perfect as they could be.  Through all that stuff, even the funeral, it was just make-it-through.  Just keep putting one foot in front of the other.  We were all together, and as long as we were together it seemed like we'd survive.  We all missed her.  We all understood who she was.  More than that, we understood each other's pain.  

Thanksgiving came, and I kept my promise.  Bree was bringing her fiance home for the first time, and dinner had to happen.  So with a very confused Grandad sitting at the breakfast table, I labored in the kitchen where I learned everything I know about cooking that I didn't pick up from Alton Brown.  I knew that kitchen like I knew the back of my hand.  Nanny, for the last couple of years, had called me... yes, all the way in Texas... when she couldn't find something in the kitchen.  If Bree and Mom didn't know, she knew there was a chance I would.  At one point, I went to the garage to take a pie out of the convection oven, saw how pretty the meringue was, and lost it.  I'd never see her pleased-as-punch eyes again as she smiled and said "good girl!"  

When we went home I had a lot to do.  We were moving into the house we just bought.  The last conversation I had with Nanny was about this house, to tell her all about it.  She was so excited that I'd finally have room for the furniture she wanted me to have, and that the kids would have plenty of room.  Honestly, I do not remember much about packing.  I don't remember much about moving.  Christmas preparation was a blur, and Christmas itself wasn't much better.  The best part was getting to have my husband's sister's family all with us at his parents' house, and I'm so glad they were there.  Christmas Eve Eric's bulging disk became a ruptured disk, and Christmas Eve festivities melted into his Daddy taking him to ER, and the rest was a blur of pain meds, praying, and comforting.  The point I remember most in all that is a moment when I checked on my Vicodin-leveled husband as he slept in the big, brown chair in the living room.  "Just checking..." I told my dear father-in-law, "because you know, when you've seen one person you love quit breathing..." and I melted into a bawling puddle on his shoulder.  Not excatly our best Christmas experience, but surely not forgettable.  

In the next few weeks, we hosted Mom and Bree for our own little Christmas, had back surgery, had Maelynn's first birthday, and unbelievably, time kept ticking.  

If you'd asked me years ago how I'd handle losing Nanny, I would have likely refused to talk about it. If anything, I'd have said something along the lines of "i don't know, but it's gonna be bad."  I know I'm not the only person to ever lose someone dear.  But this was a more than significant loss to me.  Our every holiday is different when it would have been our turn to be there.  Nanny's house has been home as long as I can remember.  Even when Mom and I lived in OKC when I was a kid, home was on Morris Creek road.  It hit me, this fall, when we had our bye week in football.  Eric's Mom and Dad were busy, and I thought "hey, we'll just go to Heavener!"  Immediately it hit me.  Mama works on the weekend.  Nanny's isn't Nanny's anymore.  


So where am I going with this?  It's been a year and I still think about her every day.  I can still weep at the drop of a hat.  There are major changes occurring in my Mom's life, my sister's, and mine.  But the overwhelming constant in all this, is life goes on.  It just does.  It can go on with you, it can go on without you.  It can go on in spite of you.  And you know what else?  All that is your choice.  You can choose to take a step back, realize that the way you wanted it to be isn't necessarily the best, and fight the beautiful fight... the fight for your and your loved ones' happiness.  Part of that is feeling the hurt and allowing yourself to mourn in your way, and that no one should be allowed to make you feel bad or wrong for how that happens or how long it takes.  I learned a ton about mourning with and comforting others, and will hopefully put that to practice.  

The best part of all this... if there is a best part... is that I have the peace of knowing did my best.  I did everything I could to love her like Jesus.  With my husband's blessing, I took weeks of our life and spent them at her side.  God gave me the grace and inner strength to do things for her I never dreamed I'd be able to do, and he gave us the joy to keep her laughing through it.  I learned a lot, not the least of which is that when you love someone and are truly grateful for their place in your life, God will give you what you need to return the favor and care for them.  You will amaze yourself.  I was grateful for the privilege of caring for her then, and I'm even more grateful for it today.  I saw her care for her father in his last days, and Mama and I, especially Mama... she would say made her proud.  

So of all the times this year when I've started to call her when Mae did something cute, or when I've said "I can't wait for Nanny to see...", of all the times I've just missed her voice or the way she laughed, or wanted to tell her about something I knew she'd be proud of; of all the times I saw her handwriting and my heart broke again, of all those memories surrounding her final days, the most precious thing I learned in all this mess of tears and pain is that God is with us.  He is with us, and He is on a side better than our side.  He's on His side.  He can see what we need.  He knew I needed a little girl, and that I'd need her sooner than we'd planned.  He knew I needed a husband who would love Nanny as much as I did, and would gracefully give me the time I needed to care for her.  

Thanks be to God for the life of Carlene A. Holt, whose name and presence remain carved on my heart. 

I miss you, Nanny.  

Tuesday, November 8, 2011

What are you?

It's been a big day!  We cemented in paperwork Ryan's sans-aid status.  We are so proud of him and so thankful for his teacher and a school district that will fit the paperwork to him and not him to the paperwork!  Also tonight was the UIL State Marching Contest.  Same kind of thing as state football playoffs, but band instead of football.  Different setup, but basically the same thing.  And it's a big deal.  The year the band where I taught my first two years went to state, Eric took me to see their performance.  Yes, it's that big to us!  Texas is serious about its marching band.  Matter of fact, band is what God used to get me here from Oklahoma in the first place.  Eric was thrilled to learn we could watch online this year, and there was one band in prelims that he just LOVED and he really wanted to share with me.

The band he was crazy about was right about the time we're usually wrapping up baths and heading into story time, so we decided to let the kids stay up a tad past time and watch this one band.  The evening has been great.  Ryan had a project to do, which was actually pretty cool.  Each of the kindergarteners was to decorate a white cardstock feather, all of which they'll put together on a big turkey in the hall.  Say it with me now... *Awwwwww"... yes, I thought it was cool.  So cool, in fact, that I decided Maelynn and Richie ought to make one too.  So armed with markers, scissors, and pre-cut feathers, we went to work.  I was proud of all the kids.  Maelynn, because she positively vapor-locks over the idea of coloring, then manages to color her whole arm purple.  Oh yes.  Her. Whole. Arm. Richie, because he used the glue stick like a pro, and did a great job of talking about what we were thankful for.  Ryan, because he wrote a couple of words with some prompting (okay, goading), and wrote his name on his feather.  I'm one of those moms who doesn't want to do the project for him, but want to give him tools to do what he wants with it, with just a little guidance in the right direction.

Once our feather mess was off the table, I threw dinner together.  After that was over, we went straight to the bath so we wouldn't miss the band Eric wanted to see.  There was a bit of time after baths, so while Eric helped the kids get the living room picked up, I cleaned up after dinner.

Those of you who read about my adventures often probably already know why I'd love to watch this, but it'd be hard at the same time.  If you don't, you can click here to catch up.  Long story short, before I was a committed stay at home wife and mom, I loved my job dearly.  It was truly what I wanted to do forever.  So as I wrapped up the dishes and wiped off the table, I hear "Honey, it's starting!"

Why, tell me, did I not want to do this?  Probably the same reason I don't like tear-jerking movies.  I know it's going to get to me, one way or the other.  I've fought the "but-people-think-I-just-sit-and-eat-bonbons" thing and all the guilt I feel watching other great moms work and do a great job at both.  Excuses aside, that's just not me.  For us, for me, for our family my being home works.  So literally because my husband asked me to, I flopped down in the overstuffed chair to watch the one show he wanted me to see.  As it began, Richie climbed into my lap, asking if I'd read a book.

Mommy:  "I'll read the book after this band, sweetheart.  This is important to Daddy, and Mommy too."

Then the thought struck me, as it has a hundred other times... I wonder if he really doesn't know how much this means to us.  After all, I've all but wiped band off the radar except for volunteering a sectional here and there, and then the kids go with us.  So I explained.

"Richie, did you know Mommy used to be a band director too, like Daddy?  I used to teach the band kids like Daddy does."

You know what my dear son said?

He looked at me like I had lobsters crawling out my ears for a second, and with a slightly furrowed brow, he said, "No, Mommy.  You're a MOMMY."

And you know what?  He's right.

A couple seconds later, Ryan crawled into my lap.  Then Maelynn tried her best to snuggle... and through a few of the happiest tears I've ever cried, I looked at Eric and said "get the camera."

Richie, Ryan, Mommy, and Maelynn

I've been a lot of things in my life.  I've been a daughter, granddaughter, little girl, a grown woman.  I've been first chair, the benchwarmer, the sorority girl, the awkward freshman.  I've been the student, and I've been the teacher.  Of all the things of this world I could be, the best title ever bestowed... above graduate, above it all is the title bestowed upon me by a golden-haired three year old boy... Mommy.  

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

Thanks be to God, the giver of all good things, for weaving the tapestry that is life, never failing to put in just the right colors and textures to give it its beauty. 

Monday, November 7, 2011


Today, I was doing so great.  Climbed out of bed at 6:00, awake. Happy.  Yes, you should be amazed.  If you know me in real life, you're still shocked.  Maybe it was due to the time change so recently, maybe the planets aligned, but to whatever you choose to accredit it, this life-long anti-morning girlie was up and ready to stay up.  In another twist of fate, my dear husband was not.  I was so proud of myself this morning.  If there's ever been a morning I had it close to together it was this morning.  Eric had eggs and toast for breakfast, left for work on time, and even feeling a bit better about the world in general than he did when he got up.  Ryan did great, so did Richie and Maelynn.  Just a great morning.  On time for school, on time for my Monday mama prayer date, back home in time to get the kids lunch and clean up the kitchen and wash diapers, then still be on time to get my big guy from school for therapy (or "ferrisbee" if you're Richie).

Then we get Ryan.  A twentysomething looking man brought him out, letting him run ahead of him... turns out he's the sub.  Ah.  Upon inquiry, I find that Ryan has had a good day but wasn't too thrilled at missing recess due to the rain.  Yeah, typical.  Change in routine throws him almost every time.  He climbs in the van, and I immediately notice his hands are covered in something... marker, maybe?  Very unlike mister fastidious.  Spill a drop of milk?  Get a little catsup on his hands?  "Wipaatoweeeeel!"  Mr. Sub Guy didn't explain, but hey... he made it through a class of 21 kindergarten kids, at least one of whom has special needs.  Gotta hand it to him though.  He did lack that deer in the headlights look that subs for PPCD usually had.

For a while now, Ryan's been attached to Stevie Wonder.  The old funk-sound type.  He's been hooked on one song for about a month now, and just recently has been listening to more on that CD.  When he got in the van, I had been listening to my iPod, and let's just say after a loud button-mashing fest I managed to get things settled and we were on our way.  He settled on the one song on that album I"m not crazy about, but it's not so tough to listen to something over and over when you have a little guy dancing in his own way and thoroughly enjoying it.

We pull onto campus after averting what could have been a huge meltdown when road work caused us to detour past the children's museum.  "Go see trains?"  "No sweetie, it's time for Ms. B."  He accepted that.  So relieved!  After the usual stroller out, two kids unstrapped, harnessed, unbuckled and one restrapped into the stroller we were on our way to the building.  The "big elevator" has been sick lately, so we've been using the "little elevator" on the other end of the building.  This time it was working, but all the way in Ryan wanted to know which elevator.  "We're going to the LITTLE elevator," he said over and over, in between my explanations that we'd like to use the big one if it's well.

At the elevator, I put Ryan on my back and picked up Richie on my front, pushing the stroller onto the elevator as a nice lady held the doors for us.  She was friendly, which is such a relief to any mom... but not being treated like a cheap circus sideshow when you already feel like one is just fabulous.  I explained that one kid had a love/hate relationship with elevators while the other just has to be just like his big brother, and she totally seemed to get it.  Love it when that happens!

As we try the drop-off, Ryan shows off what we like to call the "waternoose jump n stim" as he watches the elevator from his elevator-watching perch in the hall (not too close, but he can still see it open and close).  When Ms. B arrives, Ryan continues his thing and Richie thinks he has it made.  Nope.  When Ryan went in and the door shut, Richie fell nine kinds of apart.  This was no longer fit mode.  This was real tears, pouring from the pain of unfairness and just flat not understanding why in the world brother gets to go and he doesn't.  Such a cool place with such cool toys!

Just before this, as we waited, Richie told me it was his turn to go see Ms. B.  I have tried everything from explaining Autism in kid-terms to focusing on what cool things he gets to do that Ryan doesn't, but when that door shut in his face, it just didn't help to know that he gets to spend time with Mommy and Maelynn.  During our waiting time, he even tried to tell me that he has Autism.

NO. YOU. DON'T.  Thank the Lord, you don't.

We've visited this topic before in Knockin' Round Baylor.  I've continued to do my dead-level best to help this feel less like a sacrifice of his time and help the time be such fun that he really doesn't notice that we're taking two three-hour chunks of his days every week to drive Ryan to therapy.  I want all of our kids to feel special, loved and heard.  I want them to know their parents love them and that their feelings matter to us.  Every other time I've managed to just stay happy and drag him away to a more fun activity, but today?

Today I sat and held my precious, curly-golden-haired baby boy and cried with him.

As a band director, one of the first things you learn about picking music is that slow and pretty does not equal easy.  It takes great control in several ways to play musically as you play softly.  Nothing wears you out faster when you *ahem* haven't played much in a while than to play something slow and pretty.   I'd even argue that it can't be done without hours and hours and days and weeks and months or even years of daily practice to perfect the art of playing an instrument.  Once you have that ability, you could even make someone cry with the Alphabet Song.  If you lack the practice, it can't happen.  The muscles haven't been built; therefore the strength needed to support gentleness just isn't there.

It hit me earlier this week that it's much the same in life.  It's easy to tell someone to suck it up.  It's a lot easier to tell someone to get over it, and let's go do so-and-so than it is to sit and cry with them.  It's a lot easier to tell someone they need help than to be the help.  And more than that, it's easier and simpler to look at someone and tell them what you think they need to be doing.  Handing down a judgment, shaking your head, and walking away is not tough.  It may make you more calloused and tough... but it takes far more strength to hold your opinion and open your heart.  Part of this is relinquishing the idea that you can make someone feel happy, special, loved, comforted, etc.  No one can make another feel anything.  All we can do is give gifts of our time and hearts, and when given out of the right heart, those things can change someone's world.  When given with no strings attached, nothing expected in return, no price tag of guilt, no gain of pride... just to inspire another to turn their countenance upward and hearts light... the gifts of time, money, things, even just our presence can completely change a life.  But to go with the impulse of anger, frustration, a need for control, or even the latest thing you heard that someone else did or does can do irreparable damage.  What comes naturally and easiest isn't always best.

I still believe in helping my children feel loved and special and making sure I do what I can to help them be who God made them to be.  But I also believe that ultimately all any of us can do for anyone is listen, give real, true, abiding love... but mostly, and most importantly... carry them to Jesus.  Pray for them, with them if they will let us.  For Richie, today, the best thing I could do is teach him with my arms around him and the tears on my face that his hurt is real.  It is real, and I hurt too.  Because when you're hurting, the last thing you want to hear is "just don't hurt" or "if you'll just listen to me I'll fix your problems" or some such nonsense.

When we picked Ryan up, we found out he'd had a rough therapy session.  They're working on trying new foods, and at one point he even threw up.  Tonight, he's already melted down over having to wait his turn.  It's so hard to watch as he just doesn't understand.  It's excruciating to watch any of the kids hurt.  To try to explain what's going on is so often not helpful.  It might soak in an help later, but not at the moment.  Even as we picked Ryan up, Richie threw down because he wanted to go have "his turn". Ms. B looked at me and said, "If he only knew how hard Ryan works in there..."  and all I could do was thank her and walk away.  Well, lumber away with a screaming three year old on my hip and a jumpy, stimming six year old at the side of the stroller.  Of course, all Richie knows of the therapy room is the cool toys from the times we've had meetings there.  Ms. B and I talked about how Richie probably thinks all Ryan does in there is play with all those cool toys while we're out waiting for him to be done.  In reality, he's learning life skills... like how to wait, how to take "maybe" for an answer, how to try new foods, and, skill by skill, how to just live in the world without screaming and hitting constantly.

What do I do when it hurts them and I just don't know what to do?  Show them I love them by listening and hugging and just bearing with them, holding the advice, frustration, control, and at times the discipline for later.  Because as we've all learned at one time or another, sometimes whatever it is, it just hurts.  Whether it's Ryan's meltdowns, Richie's disappointment at not getting to go, or Maelynn's being told "no",  sometimes it just hurts.  As Crystal and even as Mommy I can't always fix it, but I can bear with them, support them, and lead them to someone who can.  So from the bottom of my heart, to all of you who are in my path daily and to those who I've met in the ASD community... I can't understand, but I hurt with you.  I can't know your pain, but I will cry with you.  And I will carry you to the one who can understand.

I will not pretend to feel the pain you're going through
I know I cannot comprehend the hurt you've known
And I used to think it mattered if I understood
But now I just don't know

Well, I'll admit sometimes I still wish I knew what to say
And I keep looking for a way to fix it all
But we know we're at the mercy of God's higher ways
And our ways are so small

But I will carry you to Jesus
He is everything you need
I will carry you to Jesus on my knees

It's such a privilege for me to give this gift to you
All I'd ever hope you'd give me in return
Is to know that you'll be there to do the same for me
When the tables turn

And if you need to cry go on and I, I will cry along with you, yeah
I've given you what I have but still I know the best thing I can do
Is just pray for you

I'll carry you
I'll take you to Jesus on my knees
          ~"Carry You to Jesus", Steven Curtis Chapman 

And I know you do the same for me. Thanks for reading.  :-)

Monday, October 31, 2011

Nope, no cutesy costume pic. But feel free to post yours!

No, I'm not crazy about halloween, no I don't think you're evil if you love it.  Really, it's cool.  Do what you do.  It makes it extra-unappealing to think of dressing the dude who is OCD about his shoes being tied just-so (extra hilarious when you realize he will only wear velcro shoes) dressed in a costume, pulling at it, miserable.  The littles don't seem to care one way or the other. If, at some point, the kids start to beg and ask if they can trick-or-treat, we will revisit the topic.  For now, we have a great time giving out candy as a family.  Unless, of course, the event is on Friday night... or an unexpected Saturday when the kids are bathed and dressed for bed and we're about to start family devotions... yeah, that was last weekend.

When Eric and I were first married, and even when we were pregnant with Ryan, We sat on our front porch in Fort Worth with our dog, commenting on each family's costumes and of course handing out candy.  And, as any newly married couple, discussing our childhood experiences with the holiday and dreaming about what we'd do with our kids.  Yeah, that's hard to think about.

On the way to therapy today, in between reaching to the CD player to turn back to his favorite song, Ryan started to pick at his shoes.  As he did, I looked (yes, carefully) at them and noticed out loud "oh, buddy... you need new shoes."

I know that a lot of kids get attached to shoes.  I get that. I was one of them!  I had this little pair of brown ballerina-type flats when I was a bit younger than Ryan.  Mom couldn't get me out of them.  When I went to see Nanny that summer, you can bet that was one of the first things we did.  The Dillard's in Fort Smith, it was, where I picked out not one but two pretty new pairs of shoes.  You've got to hand it to her... Nanny was geniusly creative.  I know what she was thinking.  She got me all tickled about new shoes, which is totally not hard to do, and tried to have the salesman throw the old ones away.  We got all the way back to Heavener, and I asked for my old shoes.  Didn't take many tears and we were back in Fort Smith the next day to pick them up.  Nice try, Nanny.  Nice try.

But Ryan, oh dear.  As I reached down to do the "mommy toe pinch", I hoped desperately that I was going to be able to get through this without a trip to the shoe store, department store, or otherwise with him.  The last time we bought shoes for Ryan with him in tow, I apologized to the saleslady as we walked in for the noise she was about to endure.  She laughed.

I didn't.  But she'd know soon enough.

It took all of ten minutes.  With my nearly six-year-old on my shoulders (hubster had just had back surgery) it was a ready-set-go kind of deal.  We went to his size, I pointed.  Then we took a deep breath and removed a shoe.  Literally, I held out his foot as he screamed, pulled my hair, and beat my head so his daddy could try the shoe on his foot.  Once we found the ones that fit, were brown so he could wear them to school and church just fine, and were velcro closure, we checked out.

Yeah, I think the lady at the checkout got the point.  

Most of the time, we're just different.  When I go out with the littles, people talk to us, comment on how precious they are... but when Ryan's with us it's so often not that way.  When he's screaming and beating his chest anywhere and folks are staring, we can't choose what looks or feels different.  There are times when it's no big deal, but there are times when the different stings.  Some times, like halloween, I can kinda decide that we're different because we want to be.  No, we don't do halloween.  We talk about Reformation Day, and we pass out candy because we want to give because we have been given so much.  And some people like to dress up and trick or treat, which is fine for them.  For me, it sounds like a nightmare.  As for the scary stuff, I guess you could say I'm a chicken.  I don't like to be scared.  The whole scary-movie, haunted-house thing is lost on me.  There are people who dig it, but there are also people who dig not having kids and love every sporty thing under the sun, and that's just not us.  Ah, a real reason to be different that can, if I choose, have nothing to do with Autism, advocacy, or safety. Aaaaaaah.  Yes, we choose not to participate.  We have our reasons.

Then there are some things that I miss... like sorting through the candy.  I was one of those kids who would sort the candy into several piles, categorizing it.  I loved doing that, but I did that with M&M's and Skittles too, even when M&M's were only brown, light brown, yellow, orange and green.  Guess who loved sorting through the candy too?  Richie picked out little boxes of Lemonheads that we had planned to pass out.  He lined them up by color, then made a little design or two out of them.  Then he made a nice little ramp in the middle of a cute, colorful box highway.

As I listen to someone talk about what their kids will dress up as, where they'll trick or treat, and even whether or not they do Santa Claus, the Tooth Fairy and the Easter Bunny, my heart wants to scream "JUST BE GLAD THEY NOTICE."  I want to launch into a dissertation on our reasoning behind this, that, and the other, and make darn sure they know to be sure they enjoy every last second of the neurotypical childhoods taking place all around them.  Would I be entitled, even justified?  Oh yes.  In the world a lot of us live in (if you turn on a TV or pay attention at the checkout in the grocery store... sheesh), I'm entitled to splat my feelings all over someone's face, just because I felt them.  Tell 'em.  Give 'em hell.  Put them in their place.  How dare they flaunt their normal lives in front of my splattered heart and shattered nerves?  I could go on and on with excuses stemming from childhood abuse, even, for things I say and what I can and can't handle and the decisions we make.  But I do my best not to.

Yes, I have and will, in the proper setting and with the proper tone, remind someone gently to be a tad more aware of what they're saying.  But anything I choose to say better be of a heart of humility and grace, not out of my own agenda.  Putting someone in their place?  My agenda.  Fixing someone?  My agenda.  When my agenda doesn't align with God's agenda, disaster will ensue.  I may not see it.  The results may be delayed, and they may be invisible.  To hurt someone just because I am hurt, insulted, or just too cranky that day is simply adding hurt to hurt.  There are times when it is appropriate to speak up regarding someone else's choices, but these times must be chosen with the utmost humility and prayer, and incredibly carefully.  Is life at stake?  Safety?  I mean, "Hey, don't throw that match into that gas can!" is a pretty safely chosen bet.  But "you shouldn't let your children watch Spongebob"?  Not so much.  That's preference. No matter how strongly you feel about it, no matter how many strong arguments you may have against it, it's still not a life-or-death decision. As a wise person once said, "Does this need to be said?  Does this need to be said by me?  Does this need to be said by me right now?"

So yes, I hope you're out there trick-or-treating it up safely with your little Spongebobs, your Optimus Primes, your ghosties, your Sheriff Woodys, your princesses.  Have a fabulous time!  And thanks for bringing them to the house.  We SO enjoy seeing them all dressed up!  Enjoy sorting through the candy like I did with my mom.  I will be here with my kids, in their regular clothes, having a regular night, save a little study about Reformation Day with my BFF, Eric.  That and I'll be here ready to hand out candy, should there be any trick-or-stragglers left over from Saturday night. You know, people like me, who had no idea.  And out of the appreciation of the grace that you and so many others... but mostly the Holy Trinity... extend to me, I will more than happily dump a load of candy in your little Angry Bird's plastic pumpkin.  I will comment on what a cutie bug he is, and all because I mean it.  And I will trust that you know what is best for your kids and yourself, as I know what is best for me and mine.

And when you come to the door and see my kids already in their jammies, or when you see us, get to know us, or read this and notice our differences daily, don't feel sorry.  Please.  We appreciate your smiles, your friendship, your words of encouragement when the day gets screamy right in front of you, and we're thankful for your prayer and all these things.  We're learning to not just embrace but enjoy our different.  We're learning to see the amazing in every personality difference, preference, and all the other behaviors that make us who we are.  We're also seeing that each of us is just as different as the other, and Ryan's differences just seem to stick out a bit more.  And this time, as far as halloween goes, difference is our choice.  We've had a great day.  

Blessed evening to you all, whether you've been trick or treating, trunk or treating, fall festivaling, remembering the 95 Theses, Diet of Worms, and other adventures of Martin Luther, or just hiding in your house with the porch light turned off.

And to all a good night.  

Friday, October 28, 2011

Quittin' time, part 2

Sorry I made you wait for the rest of this.  I keep thinking I'm going to have more time, and every time I think that something comes up.  When will I learn?  The bad news is my best friend is sick tonight so what I was hoping I'd be doing isn't going to happen.  But the good news is I have the rest of the day (and I mean until like 1:00 tomorrow morning) to get the stuff done I need to do today.  So here I am.

If you're wondering about part 1, click here. Now that we're all on the same page...

So after I left bible study, I reminded myself at times audibly that God is in control.  There's always a reason.  Always.  Even when we don't know what it is, there's a reason.  I went home, changed the littles' diapers and stuff, got what we needed and went to the school to get Ryan.  I was almost sure that since his aid wasn't with him, I'd have to get the kids out and go in and get him, since I pick him up in the middle of the school day.  Imagine my surprise to see his teacher bringing him out.  When he got to the van, it went something like this:

Me: So how'd he do?

L: We're good.

Me:  We're good?  Oh, he had a good day?

L: No, we're GOOD.

Me: Um... you mean we don't need to hire someone else good?

L: I'd like to try it.

That last comment and the look on L's face I will remember for eternity.

She went on to describe how well he'd done since lunch the day before, when his aid had resigned. Not one meltdown.  Little fits, but no meltdowns.  Being the mommy I am, I had to make sure he was safe.  Satisfied with her answer, I put my official mommy-seal on the deal and we agreed.


Full inclusion.  All day.  Only someone to help with music and p.e.

After searching the van for and reattaching my chin, we headed to therapy.  Soon as I was out of the school zone I called Eric.  We both teared up.  I think we both said "FOR REAL?!?!" about ten times.  The only other thing that we could manage to utter was Praise God.

It has now been a week and a half.  If Ryan's folder was still here, I'd show you the happy faces and "Great Day" markings on his behavior chart.  I am still in utter disbelief.

I'm in disbelief that he's doing this!  We are so proud of him!  We are so proud of his teacher!  We are so proud to be in a school district that makes the paperwork fit the kid instead of the kid fit the paperwork!  I mean, he still needs some support.  But when you're in a place where all the teachers actually really do care about the kids... all of the kids, not just the easy ones... kids like Ryan get a shot.  They get a real shot. And when they fall, others pick them up, dust them off, and give them another shot.  I cannot tell you how grateful I am for God's providence in all this.  For the teachers, administration, the special programs department, his teacher form the last three years who still checks in on him, the aid who knew for whatever reason it was time to go... all of this, we are so grateful.

I don't know why God chose to give us all He's given us.  I could begin listing it all, but don't think blogger would allow me the storage capacity.  Just looking around in our family, just seeing our three kids smiling at us, is more than enough.  We're healthy, my husband and I love each other, we still have my mother, his parents, and his Nana, we have our sisters and their husbands and families, and we have extended family.  We have a fabulous church, wonderful friends, and a roof over our heads.

As King David said in 2 Samuel 7:18, "Who am I, O Lord God, and what is my house, that you have brought me thus far?"

Who am I, Lord?  Who are we, that you have brought us this far?!

Thanks and much praise be to God!

Tuesday, October 25, 2011

Quittin' time... part 1

Aaaand I'm alive.  This fall (if you can call it that in central Texas) has been fabulous, just very busy.  Somewhere between my crafty-time, trying to get the house decorated and settled for real (I'm so not a decorator), keeping up with driving to therapy, church, all the stuff that's important to our family and still managing to be able to keep the daily stuff like dishes and laundry done is keeping us so busy.  I won't even go into how exciting football marching season is for us... well, let's just say we're busy but happy.

Somewhere in all the excitement last week, I was taking time for one of my favorite mama treats, our ladies' bible study here in town.  Discussion had just ended and we had just settled into our chairs after singing for a few minutes when my phone rang.  I picked up my phone and tried to make my way out of the room, my hunched-over shadow taking off poor Beth Moore's legs on the screen.  Sneaking into the church library I answered. It was our diagnostician.

If you've been in our situation or something similar, you know how your heart can drop when it's not time for a yearly ARD meeting and the diagnostician's number is on the screen.  Usually it's not great news when she's contacting me, and I had that sinking feeling in my gut that says there's something up.

Hate it when I'm right.

She was gentle and sweet and calm, but there's no good way to deliver it.  "Mrs. Senzig, I just wanted to let you know that as of yesterday at lunch *Ryan's aid* has resigned."  After that it was just kinda emotional freefall.  I don't generally go nuts over these things.  I manage to sing my version of that Veggie classic "God is Bigger than the Boogieman" in my heart, and it's eventually all okay.  I managed to be all business on the phone, using my version of what we affectionately called Nanny's "Tupperware Queen" voice, but I was dying.  Seriously?  She really decided she couldn't do it?  I was surprised, frustrated, upset, sad, nervous... and just flat hurt that dealing with my kid wasn't possible.  Not at her.  I am so thankful that she knew her limits.  I like her, I really do.  I know she cared about him, I know she was good to him and wanted the best for him.  But a lack of training is hard to overcome when you're thrown into the deep end of the Autism pool on your first day.  She had managed to rally and we were all proud of her for that, but in the end it just wasn't something she could keep doing.  And that's okay.  Really.  We're thankful for the time she spent with him, the effort she spent, the heart she spent.

So after she promised they would keep looking for an aid, told me that I'd need to bring Ryan just a little later to school so that he'd be with his class when he showed up (long story), and assured me that he was safe with a temp aid for the next two days I hung up and went back to class.  I did pretty well, listening and keeping up with Miss Beth on the screen.  Then I told my friend Melanie, who was right beside me, who then suggested I tell the rest of the ladies so they could be praying.  Actually, she volunteered to do it for me, and (being me) I said I'd manage.  Right as I explained that I knew exactly what was hard and why because she basically was doing my job, I told them I could understand why she wanted to quit, because sometimes I do too.  And as those words left my lips, I crumbled into a pile.

If you've never experienced a group of people who sincerely love you around you, crying with you and praying for you, I hope you get the chance.  Attention is not my favorite thing, especially with a tear and snot-soaked face, blubbering with all I've got.  But there I was, humanity all over my face, exhausted, enrobed in the hands and hugs of women of faith.

They like to call us "Warrior Moms" at times.  Most days I wouldn't call myself that.  I don't deserve that.  I'm not petitioning anyone for the cause, not knocking on doors or breaking down huge walls in the area of advocacy.  I'm not one of the scientists searching for a prevention or a behaviorist studying a new way to help these sweet ones figure out this crazy world.  I'm just a mom.

Just a mom.

Just a mom who loves her children and wants the... no, God's... best for them.  Just a mom who would do anything needed for her kids.  Just another mom who keeps the sword and shield up on one side with the game face on, and usually manages to polish the shield and smile with the other hand in a somewhat futile attempt to keep our family going.  Fighting Autism's symptoms while at the same time attempting to help our family learn to act in a way that is palatable to society as a whole.  All this without losing who we are as a married couple, plus laundry, dishes, social planning (anything social takes a ton of it), potty training, keeping up with all the usual homemaker stuff, and what?  I'm supposed to look like a human when I step out of the house?

Yep, just a mom.

And there are millions of us.  Being the warriors our family needs.  But for every time someone's called us "supermom" there are about a hundred times we feel inadequate.  Frustrated.  Hopeless.  Tired.  Weary.  But that moment of losing it... that moment where the cracks in the armor show and all the frustration, fear, and weariness pour from the floodgates... is the very moment when God shows who He is.  It's when we get to see that those people who say hello and ask how we are every Wednesday really do care how we are.  It's that little reminder that although people may never really get it, there are those who are cheering for us, whether or not they get the ins and outs of our struggles.  In our weakness, in that proof of our humanity, the world gets a little glimpse into what God is made of.  That He can do this through me?  ME?  Weak, tired, horrible at confrontation, recovering people-pleaser me?  Me who can't stop being selfish and at times lazy and impatient, sometimes all at the same time?

Yup.  In my weaknesses, He is strong.  He will not leave me stranded, even in my darkest times.  ESPECIALLY not in my darkest times.

Deep inside this Warrior Mom's armor is a scared, weary child who is tired and needs a hug.  And even when you wear as much armor as Autism Warrior Moms, sometimes it's that feather on the 2-ton barbell that sends us crashing to through the floor.  Sometimes something catches us so off guard that the armor falls and we need friends to help pick it up and put it back on... and sometimes hold it up for us.  Just for a little while.  Because even when your whole life and philosophy for living is grounded in the belief that God is sovereign, life can just be too much.

The story doesn't end there... stay tuned for part 2.  In the meantime, have a listen. :-)

The Warrior is a Child
~Twila Paris

Lately I've been winning battles left and right 
But even winners can get wounded in the fight 
People say that I'm amazing 
Strong beyond my years 
But they don't see inside of me 
I'm hiding all the tears

They don't know that I go running home when I fall down 
They don't know who picks me up when no one is around 
I drop my sword and cry for just a while 
'Cause deep inside this armor 
The warrior is a child

Unafraid because His armor is the best 
But even soldiers need a quiet place to rest 
People say that I'm amazing 
Never face retreat 
But they don't see the enemies 
That lay me at His feet

They don't know that I go running home when I fall down 
They don't know who picks me up when no one is around 
I drop my sword and and cry for just a while 
'Cause deep inside this armor 
the warrior is a child

They don't know that I go running home when I fall down 
They don't know who picks me up when no one is around 
I drop my sword and look up for a smile 
'Cause deep inside this armor 
Deep inside this armor 
Deep inside this armor 
The Warrior is a Child
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