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.  

But is it worth it?

Last Sunday was just awesome.  Ryan was begging for CE (Christian Education... our church's "Sunday school) all week, and I was hoping he'd still be ready for it when we got there.  The littles cried as they were dropped off, but Ryan ran into the room happily.  As we walked away to our CE class, I couldn't help but half-laugh to myself... I could hear Richie and Maelynn, the "normal" children, crying for Mama.  Ryan?  Happy as a clam.  But honestly, if there was a "trotted off happily" that's what Eric and I did on our way to class.  This is the one time of the week we can hold hands, chat, and enjoy each other while we're completely awake.  No worries about the kids, they're safe and are either happy or they will be soon.  It's not like some would think of respite, but it works for us.  Among at least a hundred other things, I've learned through our parenting experience that our experience is designed for us.  It's designed to stretch us, break us when necessary, but always within God's boundaries for our lives.  I've also learned that the stretching and breaking isn't fun. 

Fast forward to the worship service. I managed to sneak through the minefield of windows and doors, only revealing myself to Ryan and not the others.  If you're a parent, you know that one poorly-planned glimpse of mommy that can tank the rest of the day.  Yet another way parents have to be part ninja!  We walked into the service, taking our seats in the very back-backest of the room.  Ryan immediately asked for lunch and began to flip out just a little... but soon Daddy came in and all was well for a minute.  The next time he asked for lunch, I whipped out the stickers.  Ed. note... do not use stickers based on Angry Birds unless you want the sound effects that go along with every character.  Lesson learned the hard way. Through the service, Ryan stick at least a hundred stickers all over a piece of paper.  Then he started sticking them to the inside of his shirt pocket.  I think Mr. Sensory Seeker was diggin' the feeling of the lumps in his pocket.  Silly, sweet boy.  And it was sweet!  Such a wonderful time with my boy.  No, he wasn't taking sermon notes.  He wasn't sitting up most of the time. But he was in the chairs, between his Daddy and I, being quiet and letting us hear the sermon.  We sat when everyone else stood, but that's no biggie.  We were there and participating! 

The Sunday before... even the night before... made this a vacation right up there with a trip to the beach.  Ryan spent much of Friday afternoon having trouble waiting and accepting no.  What's trouble? Meltdowns.  Screaming, shaking, crying, kicking, hitting, beating, unstoppable.  The previous Sunday I'd not yet discovered the sticker phenomenon.  That day he started demanding loudly to leave.  After a trip out of the building for about ten minutes, after saying calmly over and over that yes, he's okay, and that this is important and we're all going to sit together and listen and learn and worship... after explaining calmly over and over why we're here and that we're not leaving till it's over... he finally calmed down.  More like snapped out of it.  It's so hard to explain.  I came very close to giving in and texting Eric to get the littles and let's leave.  It was getting hard, and I began to doubt the worth of hanging on.  After all, we go back in and everyone gets to hear all this.  But I scraped what we had left and went back in, sitting by my dear Eric.

I was so tired.  Weary.  Worn.  Exhausted.  I wanted to hold him tight and cry.  He started to fuss again, and as I was telling him calmly to "shh", the words shot through the room, hitting their mark with expert accuracy...

Pray your pain.

The little girls in front of me were writing notes to their mother, drawing pictures of random things, squirming, but generally just being normal little kids.  The contrast hurt.  Ryan isn't yet able to express himself by drawing.  Doesn't enjoy doodling.  Sounds silly, but you never realize how much these little things matter.. like sweet drawings on the bulletin in church... until they're not happening.  Then more words hit.

Pray your hurt.

I get so frustrated, so angry at times that we live with Autism.  I get angry at others for taking these things for granted.   I get so angry at insensitivity... at CELEBRATED insensitivity from people who you'd think would know better... that I have to fight wanting to shut the doors and keep us safe from hurt.  Safe from the looks and glares and shaken heads.  So bruised and crushed by judgement of people... people who have no idea what we go through, what Ryan goes through, and have no idea who we are... that I have to fight to make myself step out and have relationships with other people. 

Pray your anger.

This message was so huge to me.  The things to do other than pray?  Stuff it.  Vent it.  Stuff it... I've done that.  It eventually explodes and causes more harm than good.  If I do keep it from exploding, it still affects others via my attitude and heart toward life in general.  I've vented too.  But both of these options are expecting humans to solve our problems.  Yes, there are times to go to the other person in love, but these instances should be carefully and prayerfully chosen.  But if we pray it... always pray it when the hurt creeps up, the anger begins to boil, we're asking for help from a place we're likely to get it. 

Right about this time, I realized that I had stickers in my purse.  Randomly.  I think I literally stuck them in there to clear off the table real quick before dinner, so they wouldn't get lost.  Pulled them out, handed them to my precious boy... magic.  For the last few minutes of that service, I had some quiet.

Fast forward again to this past Sunday.  Ryan was all happily snuggled between us, being fabulous.  I looked at Eric and asked if I should go get the littles.  The service wasn't over, but the sermon was. Our church has communion every Sunday, each family walking to the front to receive the elements.  We've decided Maelynn and Richie's first little taste of church will be this time.  We walked to the front, did our thing, and walked back to the back to sit again through the offertory and wait for the benediction, the blessing in parting for the week. We raise our hands as a church to receive the benediction... as I glanced down, there was sweet Richie, standing with hands outstretched between his Daddy and I.

Is it a lot of work to stay involved in a body of believers?  Yes.

Is it worth it?

ABSOLUTELY.

Thanks be to God!

 Therefore, brothers, since we have confidence to enter the holy places by the blood of Jesus, by the new and living way that he opened for us through the curtain, that is, through his flesh, and since we have a

great priest over the house of God, let us draw near with a true heart in full assurance of faith, with our hearts sprinkled clean from an evil conscience and our bodies washed with pure water.  Let us hold fast the confession of our hope without wavering, for he who promised is faithful. And let us consider how to stir up one another to love and good works,  not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day drawing near. ~Hebrews 10:19-25 (ESV) 

If you'd like to hear the whole sermon, click >HERE< .  The inspiring sermon for this blog was September 11.

Resolve... it's not just for carpet.

Lately our house has been pretty screamy.  Ryan loves to watch movies, certain ones... and he has an astouding memory.  He has been doing more vocalizing lately!  This is fabulous, really.  The fact that he's interested in saying words is amazing.  He has even begun, when we offer him something and he doesn't want it, to say "No grilled cheese (or go home, or whatever)."  We are thrilled about this!  But it seems like for every great thing, autism brings another equally gut-wrenching thing. 

Maelynn and Richie adore their big brother.  Whatever he does is golden.  Stimming, fits, even if he just got in trouble for something and the littles heard the whole thing, two seconds later they have to try it too.  Everything from jumping on the couch to self-injury.  It's all cool if brother does it.  So you can imagine how fun it is in our house when Ryan screams along with characters in a show, or even in a book on the ipad.  Immediately, the littles follow suit, not to be outdone.  My husband has a picture on his phone of a rare night when Ryan fell asleep at the table.  Richie laid his head on the table and pretended to be asleep, too.  Sometimes, Ryan thinks this is hilarious!  The most fun was when, after we blessed our food, Ryan said "aaaaaay-men!" and Richie, being Richie, repeated.  They did this several times, each time a little louder. So very cute and sweet!  We all laughed and laughed!

Then there are the times when it's more difficult to laugh.  The times when he is so beside himself, frustrated, angry, and confused that there is no calming him down.  The boys' birthdays are just three days apart.  When they get birthday money, we've begun letting them shop for their own stuff somewhat.  We guide them to avoid letting them do something like spending all their money on every ball they see (that's Richie's schtick).  The problem with this is once Ryan has done something he likes to do, he will ask... no, demand... to do it every day, all the time.  The most common ones are "ride the people train", "ride the elevator", "Pack your swimsuit", and "go see Miss Staci".  Sometimes he'll ask once, I'll explain, and the explanation is accepted.  More often he'll ask for the same things I COULD SWEAR fifty times an hour.  Say no?  He screams and beats his chest, legs or head.  Or the wall, table, whatever. 

Let me make this clear and fast, since not all of you know us... we do NOT give in to screaming, crying, or demanding children... or anyone else for that matter.  This can mean hours of ask-explain-fit.  Ask-explain-fit.  Repeat ad nauseum.  At times the fits go into full meltdown.  Running around, screaming, hitting himself, anything else in sight, crying, gutterally screaming until he's gagging.  There are almost always little bruises on his chest, which breaks my heart. 

When Ryan asked last week to go to the store, we were fine with that.  We were on our way that direction anyway.  So every time he asked from the back of the van, yes, buddy... we're going.  Hang on.  Then we get there, and he was fine in the cart with his brother.  We needed paint for his room.  By this time, I couldn't think because of the wiggling and fits for "look at toys".  Eric and I tried to reason to no avail, telling him that we were picking colors for his room, tried to let him help... nothing.  The people at the paint counter were awesome, just talking to us even though you could tell one was pretty speechlessly uncomfortable.  We picked a great Thomas color, and after the thrill of watching the paint mixer, it was time to shop for some other things.  The fit continued over toys until he was indescribably scream-demanding to look at toys, then vaccuum cleaners, then toys again, then fans.  Trying to think and losing the battle, I suggested Eric take Ryan to potty with him... after all, Ryan might have to go too.  Five minutes of silence.  Sweet.

After they got back, the fits only escalated to the point where, in the much too long and slow checkout line, all I could do was keep him from hitting himself.  It was noisy, but not embarrassing. 

It was beyond embarrassing.  It was painful. 

It's hard enough to watch your child beat himself silly and scream till he gags.  It's hard enough to wait in line, knowing you have to have the things in your basket.  But having people obviously stop to stare? Just to stare?  Just to stare and shake their heads in, I don't know, pity? Anger? Pride that their kids never did that?  The surety that they could do better? 

I know the fit was over the top.  I know I could have left the basket.  I know, I know.  But the thing is, if I just left all the time, I'd go the whole summer without groceries.  Or Ryan would never enter a store.  Or a restaurant.  I've encountered people recently who I'm sure would rather not be bothered by the noise of autism.  To tell the truth, I'd rather not be bothered by autism either!  I'd love for Ryan to have the ability to effectively communicate everything he needs, process everything around him without the need for sensory input hitting provides, and for him to act just like his brother and sister. 

But that isn't Ryan. At least not yet.

It might be him someday, and we will continue to work hard to help him understand the world.  If we don't try, if we don't endure the stares and the glares, the loud, cowardly not-to-our-face-yet-loud-enough-to-hear comments (thanks, dude in the children's restaurant this weekend), we would not be helping Ryan at all.  We do have to remember who we are when these things happen... called to be slow to anger, slow to speak.  We have to recognize the openings to share and educate, but never at the risk of doing more harm than good.  We have to realize, also, that while it would be great if everyone realized that it's not their place to judge our parenting, that's not going to happen.  We have to remember that by the grace of God, that could be us being insensitive... and it probably has been and we didn't even know it.

I would love to be able to say that I smiled and stayed perfectly calm and hopeful through the store ordeal and the restaurant ordeal, but I'd be lying.  I nearly glared a hole in the guy's head on his way out of the restaurant.  I bawled the whole way back to town from the store.  There are days I feel somewhat trapped in the house.  It takes an indescribable amount of energy to muster the resolve required to shove away the fear that something awful will happen or be said. 

Yesterday we almost lost this battle.  On the way into my inlaws' church, we had another one of these fits, this time over trains.  Church=trains to Ryan, and that's something we have to address.  But it's hard to address anything when you can't get in the building for the meltdown.  We almost went home. We didn't.  As I sat there with Ryan fiddling with his "red" (a pocket etch-a-sketch) nestled between Eric and I, my mind wandered to how many parents of ASD kids might be in the same room as I was.  I knew of one other couple, maybe two with kids on the spectrum in the church.  Out of the hundreds of people before me, maybe four people got it, not counting our family. 

I wondered how many there were outside the doors.  I wondered how many people just couldn't muster the resolve to endure being so very different.  Let's face it.  A six year old boy screaming and beating his chest at random is not a terribly welcome addition in any place where a group is gathered together to do anything remotely quiet or organized.  The week before, for the first time, I lost such resolve myself.  For the first time, I just didn't have what it took. I hope it never happens again, but that's just another promise I can't make.

The fits are hard wherever we are.  They leave me thinking, as the tears roll and in between sobs on the way home, about so many things.  Wishing I could quickly explain that he can't help it in a way that is meaningful... wishing I could change the world and make it a place where people trust each other, and understand that trust has to be issued to each other more generously than judgement.  The funny thing about that scale is the judgment stings more than the sensitivity and trust heal.  So there has to be more trust, more sensitivity than stares, ugly comments, or unsolicited advice.  Do I think this will happen?  I wish it would. 

I wish that would happen for not just my family, but for all the families linked to all the other blogs I read, all the mothers and fathers and people with ASD who need so desperately to be loved not in a conventional way, but in a way that is tangible to them.  I read of so many broken hearts, so many lives in which survival mode is the norm.  For all those families, I pray for peace and comfort.

For the parents who still wait for the first word... for 18 or 20 years.

For the parents who get only three or four hours of sleep.

For the parents who see beaches and pools not as relaxation, but as drowning hazards.

For the children who are covered in self-inflicted bruises.

For the parents who know the pain of not feeling... or not being... welcome.

For all of you who deal with the seizures that Ryan's been spared.

For all of you who know the pain of the guilt of wondering if you're doing enough.

For all of you who are still potty training at 5, 6, 7, 8, 9...

For all of you who choke up when you see something specially made to benefit your child's need or just to make your child smile.

For all of you who know the immediate sick feeling when you haven't seen your child for even a second.

For all of you who know the kick in the gut of having everything you offer, every question you ask answered with a scream, sometimes for days on end.

For all of you who know that those of us who experience the deepest pain cannot be pitied; for we also experience the greatest joy.

For all of us, I pray we will all find peace by casting all our anxieties on Him, because He cares for us.  (1Peter 5:7 ESV)

And I have to tell you... if we hadn't gone Sunday, we would have missed the encouragement of one person who knows an ASD kid, and another who didn't, but just got a kick out of watching him, feet nearly in my face and all. 

Those friendly, accepting faces, though they didn't solve any of our problems, were gifts of the Lord.  To be met with smiles and looks in the eye instead of sideways glares was simply heavenly.  To be enjoyed and not tolerated was blissful. 

Thanks be to God!!!