Crazy Honest

As I visited with a friend about the start of school, I could hear him starting to have trouble.  It's not a single-sense recognition.  When he hits, yells, cries... when he's losing control... it hurts us too.

Quickly excusing myself and taking a deep breath, I hurried down the short hall to his side.  Squatting down at the table, patting his back a bit with my hand, I heard he was having trouble getting used to a change in transition.  I thanked someone I consider one of THEE most amazing people I've ever encountered for being who he needs, and started to try to help him.  

Remember, I usually can't stop these things.  Usually, I can just stay by him, speaking in a calm voice, using few words.  Or that's the aim anyway.  I'd be lying if I said I'm a champ at dealing with meltdowns. 

Normally when this happens, whoever is around just kind of either carries on, not judging or bothering us.  Some will carry on but keep an eye on us, staying in earshot in case I need help.  Both are invaluable reactions.  

One little boy in his class approached us.  With wide eyes and the sweetest, most innocent demeanor, he said "I've been in his class before.  He gets CRAZY!"  

Ouch.  

I smiled, unsure what else to do or say, and said simply (and as kindly as I could muster), "I know."  

Because I do know. 

As I made my way to the service, all I could do was fight with the temptation to be devastated.  He called my kid crazy.  He called my kid CRAZY!  

But you know what?  Yeah.  He used the word "crazy."  But he didn't say Ryan IS crazy.  He simply walked up to me, not knowing I was Ryan's mom, and said something he thought would make me okay with what was going on.  And let's not forget that this is a little boy we're talking about here.  

Once the initial emotional ouchie of hearing "crazy" used to describe Ryan's behavior, my mind scrambled with the thought that I missed a teachable moment with that child.  What could I have said to help him understand?  

Then it hit me.  I can't explain it.  Yes, I can give the clinical reasons why I THINK he hits.  I can give all kinds of perspectives from blogs and books and doctors and therapists.  I can tell you how it feels for me to watch and hear it, and I can tell you what his chest looks like at the end of the day when he's had a rough one.  But do I really know WHY?  And why would I act like it's no big deal when this is one of the most if not the most frustrating, painful, potentially crippling part of autism for us?  

As it stands, I'm glad my response was what it was.  Not too much, not too little.  And as this child (hopefully) continues to grow alongside Ryan and our family, he will maybe not be afraid to come to me with questions.  He's obviously not afraid to get too close to Ryan, because he had to get pretty close to be able to speak to me.  

I do worry what Ryan heard and how he processed it.  But that's another reason why I'm glad I didn't make a big deal of it.  I'm definitely not suggesting that it's okay for adults to walk up to someone struggling in that way and say anything other than, "what can I do?"  This was a child, expressing to an adult what he has witnessed.  I choose to believe that he was being honest.  I choose to let go of the right to be upset that the c-word was used in reference to any part of my kiddo.  

You know what else?  I'm thankful that I can do that now.  That after years of being stared at, glared at,  and having the occasional rude comments and the more common whispers, my security in who I and who Ryan is in the eyes of God can overcome the need to defend. 

There have been times all too recently when I was half afraid to leave the house, and more afraid to be around people.  Too afraid of the pain of stares and insensitive, ignorant comments to step out and try anything.  And that still lingers in many ways.  But there is hope and comfort in realizing that my best is all I can do, and Ryan's best is all he can do.  

Thanks be to God for holding my tongue and comforting my heart, and for allowing me to see the honesty in a young boy's eyes... and that, for that moment, I experienced the most honest, pure form of empathy imaginable.

And don't you worry, church friend-parents who are reading this... I have no clue who this kid is or who he belongs to.   But I do know that he was a sweetheart.  

Blue

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

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

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

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

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

Before he started hitting milestones late. 

Before he quit hitting them altogether.  

Before he lost words and skills. 

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

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

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

Before the word "autism" was first spoken.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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