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!

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