Friday, June 29, 2012

The March

It's been interesting, this summer, to be home a ton more than usual.  Usually we stay gone for a good chunk of time to spend in Oklahoma, but since my Mom's in a bit of limbo right now and isn't in my hometown anymore, we're enjoying our house all summer for the first time.

To tell the truth, this is probably the most I've been home for the summer my entire life.

As you learned in one of my very first posts, home has been a rather elusive thing for me.  If you'd like to catch up on that post, click here.  I wrote that after we lost my Nanny, and inexplicably important person.  In it you see that every summer, as far back as I can remember, the end of school meant packing bags and heading out.  When I was in late grade school through college, a large chunk of the summer if not all was spent in Fort Scott, Kansas with my father and stepmother.  That experience, my friends, is a whole other blog... or as a friend of my Mom's used to say, a whole other Geraldo.

Hands down, the best summers were spent on Morris Creek Road.  All three of my kids got at least part of a summer there, crawling out of bed to pancakes and playing on the green breakfast room carpet while the adults drank coffee and visited, laughed, planned, and shared.  Some of my earliest good memories came from there.  My favorite times in life as a kid revolved around these people.   The smell of bacon, coffee, and a hot griddle were mornings on the hill.  In the summer, the cantaloupe sliced in long, thin curves on square Tupperware plates accompanied our coffee... as well as the cries of "eew" as the older in the crew sprinkled their melon with salt and pepper.  I could get into the salt part, but not the pepper!

As a kid, we weren't always at the breakfast room table.  Often we were out camping at one of the beautiful lakes in Oklahoma and Arkansas.  As a child I spent countless (yet somehow not enough) days spent swimming in the lake with Grandad and sitting among the ladies between the trailers with my Cabbage Patch Kids lacing cards, pretending to crochet or knit like them.  I even had my own "Crystal-sized" lawn chair.  I remember... and someone please tell me you do too... feeding the baby goats with a bottle at Queen Whilemena.  That was my favorite place to camp.  They also had a train you could ride, and an old steam engine and coal box and an old army tank that we crawled all over!  They were black, so they were hot... but who cared?  And oh, did I ever skin my knees up there one evening!  I decided that one of those lacing cards would make a great kite, and ran down one of the roads, downhill, and wound up wiping out on the hot asphalt.

At home, I always had a little wading pool for splashing, and some little boats and things to play with.  Once it was dark, we'd go in the house and have dinner and sometimes Pepsi floats in the den with red and orange shag carpet (man, did I lose a lot of Barbie shoes in that carpet) while we watched all the old nighttime shows.  I watched JR (I know, it was Dallas, but I called it JR), Falcon Crest, and Knots Landing to name a few from the comfort of my inflatable little girl chair.

Evening time on the hill was, and I imagine still is, amazing.  It gets a little cooler, and the cicadas sing as the sun sinks behind the west side of town.  The KCS engines cry out their warnings to the drivers all hours of the day and night as they thunder through town, often stopping to refuel or switch.  The train sounds are still comforting to me; that's what home sounds like.   The air is cooler up on the Runestone, where I loved to play in the evenings, and took my sister and cousin to play later.

There is so much of that stuff I want to share with my kids.  I loved those times so much.  What a great place and way to be a kid.  Those people, those times around the breakfast table at Nanny's remained my favorite thing in life even when most kids would rather have been anywhere else, and through college, right up to the times when Nanny couldn't remember where she kept things in the kitchen anymore.  The last meal I cooked in that kitchen was the Thanksgiving a week after we lost Nanny, with Grandad sitting at the breakfast table knowing that it was okay that I was there, but not knowing who in the world I was.  I did okay... not great... but lost it when one of my pies came out perfectly.  Gorgeous meringue.  Toasted just right, with little bits of toasted coconut here and there.  The desire to hear her say "good girl" came out in choking sobs.  I so wanted to hear her say those two words like she always did.

Recently I've seen so many times and in so many ways that God didn't take away those times.  He didn't take away what I enjoyed.  People enter and leave our lives for various reasons.  Suffering and loss is a part of living in a fallen world.  We cannot freeze time.  It marches on, but not just trampling everything in its path like a tank.  If we will let it, time guides and reminds, teaches and reproaches when accompanied with a heart desiring to get to know the nature of its Creator.  If we refuse this lesson, it will run flat over us.  Kick and scream and cry all you want, but the gears keep turning and the world keeps spinning.

Not too long ago, I sat at the kitchen table with my newer family north of Dallas.  It was Saturday morning, the kids had finished their food, and the coffee flowed almost as freely as the puns.  Along with the laughter came theological discussion, learning, sharing, and intermittent snuggles with the kids.    In between stories and in a lull of the giggles, it dawned on me.

This is it.  This is my favorite thing.  God didn't take it away!  He simply moved it.

And some of those old favorite people are still around.  Some are younger than I am, and some are older.  The times we can get together are fewer and farther between, but oh are they sweet!  And now I've received the gift of a summer at home with my kids.  While most of the things we do are different, the idea is still there.  We're together, we're making memories, we're enjoying our time.

Thanks be to God for those with whom I share the march of time!


Wednesday, June 27, 2012

Our next trip to Children's

Right at the beginning of our little trip to OKC to see family, we had a trip to Children's for Ryan's eyes.  You can click right back there on the grey if you missed that.

I told you how frustrating the appointment in itself was.  The residents did a great job, but the surgeon who we've known in the past to be very helpful was just not the same that day.  He spent about five minutes after we'd been there over and hour and a half looking at the screen with Ryan's information- the information the residents, Ryan, and I worked so hard to gather, might I add- and dropped the bomb that he needs an EUA (exam under anesthesia) to get a good read on his pressures.

All the frustration of the visit itself would have lent a clue to the doc that this kid might have a hard time with the EUA process, but he wasn't there for it.  Surely they communicated, right?

I was so toasted from holding Ryan then desperately attempting to console him over and over that I think I just stood there with my mouth open when the doctor said he'd like an EUA.  He double checked, told me how long it had been, and my roasted brain could only say "okay."  Inside?  My head was screaming "Are you NUTS?!? Say something!  The man is right in front of you!"  But my exhausted emotions won.

One of the sweet residents who had been with us the whole time told me that he saw a slight discrepancy with the prescription for lenses that the other doctor (not the surgeon, the ophthalmologist) gave us last spring, and he said he'd like us to wait while he called him.

Apologetically, Mr. Sweet Resident led the hot mess that was Ryan and I to the inner waiting room, the place where we'd waited for Ryan's eyes to dilate.  His eyes were still dilated, he was still confused and quite unhappy.  I sank down in the chair-ish couch-ish thing, holding my exhausted and spent little man, and all I could think was "This is crazy.  I can't see an EUA happening." Somewhere between that thought and the sheer emotional exhaustion of the day, I kinda lost the ability to do much more than go through the motions and keep Ryan together as best I could.

Thankfully, I didn't have to mess with scheduling.  They went and found Eric for that.  And oh, did I mention that the whole time Eric was waiting in the outer room with Richie and Maelynn, and part of the time I waited with Ryan I could hear her crying?  Just not our best day.

Fast forward a bit, and after some time to process and throw it around with some of our favorite counsel, we called Children's to talk about the EUA.

The last time we did this was when Ryan was three.  We were even more in debt than we are now from several things, not the least of which was paying for the two surgeries and six or so EUA's from the time he was three months old to the time he was three years old.  Once autism was spoken as a possibility, between dealing with that, a job change, and trying to pay our bills we decided to hold off on the EUA.  Last spring, we thought we were in the clear when we had his pressures checked much the same way as we did this month.

Seeing the screen, when Eric called the first person in the queue at Children's, he got the same pat answer.  You know, the one where you can practically hear their eyes rolling.  "We deal with special needs kids all the time, we're used to it."

Suuuure you are.  Thanks, dude, but let me speak to someone else.

So a few transfers and different phone calls later, Eric reaches the surgery center.  All along the way we're not quite getting blown off, but shifted.  Finally we reached a nurse who knew more of what she was dealing with.  She told us that there's always a PA in charge of each kid as they come in, and she had one in mind she wanted to call us, but that she was with patients right now.  Okay, cool.

The whole time we're preparing what they need to know.  Little huge things like the fact that the kid won't wear a band aid for more than twenty seconds.  Like his communication skills... or lack thereof.  We've done this before, yes... but we've done it when Ryan was a baby through preschooler, not as a seven year old who could really hurt himself.  I can't tell you how many times I've pictured Ryan yanking an IV out, or jumping up out of bed and hitting some of the plethora of tempting buttons in the recovery room.

We also discussed the fact that we're able to tell these people thanks, but no thanks.  There are other doctors and hospitals in the world.

Then, just when we were beginning to think no one was going to listen, just as we finished lunch, the phone rang.  It was the PA.

Eric began telling the PA what Ryan was all about.  Our concerns, our fears, our desire for Ryan to not only be safe but not hate medical professionals.  About five minutes into the conversation, Eric gets my attention with wide eyes, a huge smile, and a big thumbs up.

The PA has a son with autism.

She gets it.

They had a nice, long visit about things.  She said that she'd work on getting us put in the regular surgery center, where they have walls instead of curtains between beds to keep Ryan more contained. She said he could bring along the iPad.  She's going to work to get him scheduled in the OR first thing so that he can be in and out before it gets too crazy.  We also learned that they don't assign anesthesiologists until the night before, but that she'd work to get us a flexible one... one who would listen and be willing to make sure the IV comes out before Ryan wakes.  And get this... she's going around taking as many pictures as she can of all the places Ryan will see so that we can plug them into his social story app on the iPad.

We're still not thrilled about having to do this, but God's providence in giving us this PA, this mother with a son with autism, to stand in the gap.  To translate a bit.  Okay, a lot.  And boy, are we relieved.

Thanks be to God for his providence and his sweet peace!


Tuesday, June 26, 2012

Rollercoaster

If you've been reading for a while or if you know Ryan you know that elevators are a big deal with us.  Huge.  It's actually bigger than several things for him.  Kind of a love/hate thing.  If you're new to the Ryan and elevators phenomenon, you can catch up by clicking here if you like. 

Now that Ryan is doing better with trying new foods in ABA therapy, we're transitioning to conquering the elevator thing.  It's more of an issue than it used to be simply because he's older and bigger.  Picking up a sixty-pound, seven year old Ryan is much different than lifting a closer to forty pound, five or six year old Ryan.  His elevator thing has been to hit the button, spout "mommy will pick you up" nervously, and then hop around, all stimmy, flapping his hands and humming, until you pick him up.

Once Ryan's picked up for the elevator, his body screams fear.  Well, I say that, but it's really a fear-excitement kind of thing.  Either way, his whole body stiffens.  There's no need to hang onto him... he clings out of fear.  You can literally completely let go of him, arms outstretched and he will not hit the ground.  It's amazing how strong that kid is! Recently, in a hotel, Ryan had to get on the elevator without being picked up, but did not do so willingly.  Once on the elevator, he grabbed the handles and made sure his feet didn't touch the floor.  I think his cousin who's into acro yoga would have been proud!

It wasn't a problem to lift the little man until lately.  The older and bigger he's become, the more apparent it's been that we need to do something about this.  Ms. B offered, and I more than gladly accepted her precious ABA help.

Today, Ryan was rockin' the BARC.  And it went a little somethin' like this...

We're sitting in the hall, Eric and the littles and I.  Richie and I are working on sight words, and Eric is calling around trying to figure out the system for Ryan's eye exam under anesthesia.  Regularly, Ryan walks out of the BARC with Ms. B, exclaiming "level three!" Then he walks away to walk up the stairs to the third floor of the building... yes, going to the third floor is currency with Ryan.  So I congratulate and celebrate with Ryan, encourage Richie, then turn immediately to help when Eric has a question or needs my opinion.

Or has to deliver information I don't like, then we wind up discussing.

So it goes from celebration to defense.  Over and over.  Praise and encouragement, then to the sword and shield we went.  It wears on us, but it's life.  More and more we realize there must be the defense side.  More and more often we notice that we have to prepare when we're doing something new.  But at the same time, we have to continue to keep up with what's going on, keep the least restrictive environment, as they like to say in the education world.  We go from discussing things like how little he can truly communicate, how much different everyone's expectations have to be from a typical seven year old, straight to celebrating because he runs up to us stimmy-happy, bubbling over with "you did it!"

Then right back to "If they won't listen and understand that he can't tell them anything about himself... if they refuse to accept the fact that he won't keep a band aid on for twenty seconds or let anyone take his blood pressure, much less put in and leave alone an IV, I don't know that this procedure will happen."

When it comes to our kids, we all seem to have this ability to ride the coaster. One minute trudging up the hill, and the next minute careening down the hill and around the corner, shouting and celebrating, hands up, throwing ourselves into embracing the moment.  The next minute, we're back to throwing ourselves a completely different direction.

Over and over, Ryan would come by with Ms. B and her helper for the day.  Over and hover, he'd come up to me excited, saying "you did it!" Each time, I'd encourage him to tell me what he did.  Each time, one of the ladies with him would coach him to tell me, giving him every word.  Each time he wouldn't look at me, I'd take his puffy little boy hand, placing it on my cheek to remind him where to look.

Frightened of an outcome one second, celebrating a ride on the elevator or a bite of pickle the next.

The contrast is amazing.  Every parent does it at one time or another, in one way or another, I suppose. But today was interesting.  Not only was Ryan riding an elevator without being held (!!!) and taking bites of, chewing, and swallowing pickle (only tossed the lunch monkey once), but we saw in dizzying snapshots the reality of where Ryan is versus how hard he works, and how far he continues to come.  One second trying to remember what we want the surgeon, anesthesiologist, PA's, and nurses to know so that the experience next week will be as smooth as possible, the next minute hugging and high-fiveing as Ryan shows off, with help, his hard work.

One second, encouraging him to simply say "I rode the elevator" or "I ate pickle" and the next second trying to explain to someone who has never met him and sees only a blip on a computer screen or a chart why he can't tell you if this hurts, or if he's cold, or if he's scared.  Why he wouldn't care a button for a Spiderman toy but would flip over a Thomas engine.  Why we're making such a big deal of something so simple.  It's a simple thing, the EUA.  Under anesthesia, check his pressures, dilate and refract, then wake him up.  No biggie.  But it is for Ryan.

Will they listen?  Will they truly understand and take to heart our concerns?

Will Ryan know how awesome we think he is?  Will his brother and sister know how much we love them?

We sure hope so.  We pray so.  And we try to trust and enjoy the ride, we really do. But sometimes it just gets to be so much, the curves and the drops make our stomachs flutter.

But just before we lose it...

Just when we think we can't take it...

At 11:59...

He always comes through.  Always.  Often in a way we'd never have guessed.

Thanks be to God for Ryan's success today, and especially for ALWAYS coming through.




Monday, June 25, 2012

Goop

Is summer in full swing at your house?  I think even all my northern friends are finally out of school, right?  Whew!  I think we got up to about 106 today.  Blech.  

This summer we've taken a nice trip to see family (well, actually a couple with like 24 hours at home in between) and we're now home.  For about four weeks, we're home.  I mean, we're usually gone for about a month or more in the summer, or that's how it's been.  

For the most part, home is great.  I love having all the kids home with us, and getting to have Eric only go to the band hall for a few hours a week is really cool.  What a great opportunity!  To have all the family together for such a long time... day in, day out... 

*gulp*

Now I do enjoy the crud out of my kids and my husband, but there's this part of me that wants so badly to seize the day... to make the our lives fun, not wasted... that somehow manages at times to suck the relaxation right out of everything.  I mean, somewhere between the ambitious me and the part of me that just wants the kids and Eric and I to have a fun, relaxing summer is really where I need to land, right?  

Then there are the times when "cool mom" has a fun idea and it flops... or it flops with one kid and not two, or two and not one.  Today, Ryan asked to paint.  We'd done all the "ambitious mom" stuff.  We managed to work on addition with the stuff they sent home from our last ARD (yes, one of the member of the committee listened to my concern about his adding skills and brought me manipulatives, some that she had made, to our last meeting).  He's so cute about it, too.  He keeps repeating praise he's heard from apps... and the wrong answer sound bytes.  Ah, Ryan.  

So we got out the watercolors, and after a flurry of painting mess, it was time for lunch.  Between the kids pretending to take naps in the floor of the kitchen and my indecisiveness, it's a wonder lunch came about. After naps and iPad time, I decided to try making this gooky stuff I found on that pinning website... you know the one... thinking the kids would all be having a blast.  I honestly thought Ryan would kinda poke at it and scream at me.  He is quite the fastidious little man.  You'll understand my surprise when Richie cried at me, eventually leaving the table before exploring his slimy bowl of goo.  Maelynn was completely unimpressed as well, leaving Ryan and I at the table, completely addicted.  

It's the strangest stuff!  It's liquid, pourable and goopy.  But as soon as you move quickly with it, it freezes.  Try to poke at it, and it's immoveable in an instant.  But, moving slowly and gently, one can easily be submerged in its cool, slimy wonderfulness.  Too forceful, and it stops moving.  It's an interesting thing to play with.  



And get this... after playing for just a minute with the slimy stuff, Ryan exclaims in his usual newscaster voice, "This is wonderful!  Thanks, Mom!"  

Yes, there is a Crystal-shaped hole in the tile where I passed out!

How too are the kids... is Ryan... when we force things along.  There are things that have to be done.  There are times when a parent must get their point across to a child.  But when I can I have to remember that time with the kids is a bit like the gloppy stuff we played with today.  Give it structure to keep it from going too crazy (because no structure would drive Ryan nuts)... but make sure so slow down and enjoy the days as they so quickly slip through our fingers.  

Because it seems just yesterday it was just Ryan and Eric and I... just the day before we were dating... just the day before I was wishing for my prince charming.  

Thanks be to God for the days!    

Friday, June 22, 2012

The Church Monster: Another Side of the Story and Wrapping Up

We're in a series this week.  If you're just tuning in, you can go here, then here, then here if you want, and you'll be all caught up.  Today concludes our series... thank you to all of you who have read, shared, and taken to heart. 


This may well be the hardest post for me.  It steps on my toes.  It's the part I learned through experience, too many hours of searching between the internet, the word of God, listening to others, and through good old fashioned trial and error. But the scariest part is knowing that the very people I'm worried about could be very unhappy with this part.  Try to stay with me.

Let's think about Mr. BlueShirt for a minute.  What do we know about him?

He was in the same place we were.  He wore a blue shirt.  It seemed he was with the woman next to him.

What do we NOT know about him?

We do not know where he's from, if he's a first-time visitor or a member, or his name.  We don't know what kind of morning he had.  We don't know what kind of life he's had.

And, if you will... maybe he has a form of autism himself.

The truth is, we just don't know.  We can't know him any more than he could immediately know us.  It's not like he was wearing an "I hate noisy kids" t-shirt.  I can think of all kinds of reasons he might have been on his last nerve that morning.

As much awareness as we push and fight for, as much as there is available, as many understanding, amazing people are out there, there will still be hurtful moments like we had.  That doesn't solve the problem of how, at times, a visitor may accidentally negatively represent the whole church to someone who is there for the first time.

There is a great need to remember that these people are people too.  Mr. and Mrs. BlueShirt are children of God too.  Just as we needed to receive grace and mercy from him, he needs to receive grace and mercy from us.  Had he confronted us at an appropriate time, we would have done our best to gracefully present the truth of autism to him.  But even then, there is no guarantee he'd accept what we said and immediately see the need to be a touch more tolerant.

There are NO THROWAWAY PEOPLE.  No soul is disposable.  There are no blessed subtractions in God's house.  There are folks who walk away, and there are people we must distance from for safety issues in extreme cases, but if there is a "yes, he's GONE!" with a high five about someone hurting us leaving a church, there's a heart check needed.

I know that's where I was for half the sermon and the whole ride home, talking through how we handle these things.  Something amazing I've learned from our pastor is that you can't deny pain or stuff it down, and spreading around makes it worse.  You have to pray it.  Tell your Father it isn't fair.  Tell Him how they hurt you.  Over and over if you need to.  Ask for help healing.  Dive into the Word, jump into the Psalms if you don't know where to start. If you want to know more, click here and start on 8/14/12. 


But please don't deny your pain.  And hurting others because you're angry isn't a good thing...

"for the anger of man does not produce the righteousness of God."  James 1:20

So what do you do?  What do I do?  We've been hurt.  We know we should be involved in a body of believers, but it's so hard.

I'll tell you the same thing I told myself.  Keep trying.  Communicate with your child's Sunday school teachers.  Don't be afraid to have expectations.  But make sure you balance that with humanness.  In everyone we deal with, we have to remember that they're just people.  Fallible, sinful, trying-every-day-just-like-us people.  Reach out a little.  If you're like me, reaching out at all is a large leap out of your comfort zone.  My comfort zones are my house, my in-laws house, and my mom's house.  Anything outside those, with Ryan in tow, is game time.  I'm on-edge, prairie-dogging and where's-Ryaning my head off.  Add to that I'm a bit socially awkward myself, and oh my word, without the grace of God I'd be a hermit.  So not kidding.  Keep giving it a shot.

Never set foot in a church?  Haven't in a long time?  Find one you think you'd love.  The way we found ours?  Our denomination has a list of the churches in your area online.  You could click here and pop over there if you want.  Call the church, and ask to meet with the pastor.  This is what we did!  Our pastor was on sabbatical at the time, but we got a call from an elder.  It was awkward, but we actually presented our situation, who we are, a little about autism and the challenges it presents.  Then, we asked as humbly if we could if he thought we'd be welcome.

WHAT?  They really let you ask that?

Yes, we asked if he thought the congregation would be a good fit for a family such as ours.  We can't visit churches like a regular family.  It just doesn't work.  It's too hard.  When we go to church with our family in Dallas, we use the special needs ministry there... which is wonderful... and it's still hard on Ryan.  So it made sense.  We meant to meet with the pastor, but that didn't work out for just the reason I mentioned earlier.  We visited and quickly found he was right!  The CE (Christian Education, our Sunday school) teachers actually had a little meeting with us on how better to reach our boy!  I'd suggest trying to schedule one with your child's teachers.  So much has come from it.

Please give it a shot.  Yes, there will be people who won't get it.  They might even hurt you a bit, usually unintentionally.  But there will also be people who, after seeing you deal with a major meltdown, come to you with the most amazing encouragement.  And you'll never know if you don't try.

"But you don't understand... "

No, I don't.  I can only fully understand my own situation, and sometimes I don't do a great job of that.

But remember for a minute that Jesus wasn't accepted, either.  The apostles weren't exactly treated like rock stars (well, maybe, if you call a victim of stoning a rock star).  If you truly believe that your child is capable of safely participating in church (I know there are physical reasons to be home), and your heart is to teach your child to worship and be with God's people, work through the looks.  Keep going and remember that you are doing the right thing.  As much as you seek to be understood and for your child to be understood, seek to understand.   

From every angle of the issue, I hope you can see that grace and mercy are key.  If we will all, from every angle, do our best to chop pharisitic judgement from our lives, and keep the gospel and the heart of it at the center, we can't go wrong.  We will stumble!  Others around us will stumble, too.  But we're all working through life together.  That sounds so easy until the work hits... but it's worth it.  

It's never too late.  

And churches, church-going folk... remember, some understanding, a smile, a pat on the back, and just treating us like people is all we expect.  Because, as my dear Dad S put it this weekend, we're all special-needs in a way.  We are all sinners in need of grace, incapable of rescuing ourselves.  Consider placing something in your bulletin that states clearly that children and their bit of wiggly noise is welcome, and a reminder that these parents are shepherding their children in being the understanding, welcoming church members of tomorrow.  Consider how you judge, remembering that your children will learn from your example.  

2 Let us hold fast the confession of our hope without wavering, for he who promised is faithful. 24 And let us consider how to stir up one another to love and good works, 25  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 10:23-25, ESV

Let's go from here, seeking to keep the truth of the word and the heart of the gospel at the center of everything we do.  When we stumble, there is forgiveness.  When we fall, there is help.  Reach out a hand for help and to help, and one will surely meet yours.  

And remember to pray for the Mr. Blueshirts.    


Remember that we're praying for you. 

Thanks be to God for each of you.  








Thursday, June 21, 2012

The Church Monster: One Side of the Story


Did you miss yesterday's post?  If you missed it, you might want to click here.  If you did read, welcome back!

So what do you do when you and your child are doing your best and someone treats you like Mr. BlueShirt treated us?

For us, the biggest concern wasn't what we'd do, but what would have happened had be been visitors that day.  I mean real visitors.  As in, looking for help, looking for a church home, looking for hope visitors.  Those glares are the very things that shove hurting hearts that much farther into the darkness.  They are the very things that make the church steps seem like Mt. Everest and the doors fiery and impossible.

And that's just if you make it out of the house.

Because honestly, why should these people leave their homes on a Sunday morning?  They can go to the local grocery store to be glared at, or just about anywhere else where a child is expected to behave.

I must add that I know this church well.  I know that, as I mentioned in "Talking" last week, that for every one of the Mr. BlueShirts out there, there are several folks who aren't only okay with existing with us in the same room, but also reach out to encourage us and Ryan.  

The thing is just that... we knew this place already.  We knew walking in that we're more than welcome.  But what if we didn't?  Let's touch on a few more what ifs that I've either experienced or heard of. 

What happens when you walk to the door of the Sunday School class and are told that your child can't participate?  

What happens when an usher taps you on the shoulder and offers to show you the nursery? 

What happens when you're asked to teach your child's Sunday school class, but you're not called to teach?  

What happens when you're told you must stay in class if your child is going to attend?

Ouch.  

Let's look at the worship service first.  Any quiet time is going to be hard for kids like Ryan.  The answer is not shocking, and it's not magical.  It actually might sound a little trite, but please stick with me.  What would Jesus do?  Does Christ really expect people who aren't capable of following said rules to kindly leave the premises?  Would He glare until we got the hint? 

Isn't carrying the gospel of Christ to everyone regardless of race, color, culture, ethnicity, socioeconomic status or any other difference really supposed to be our goal? 

So if a kid behind you is making noise, take a second to take a deep breath.  You have no clue what those people faced to get here.  You have no idea where their hearts are.  Even if the child looks normal and looks old enough to know better, that is not anyone's call but the parents.  Personally, we believe that Ryan must learn now to be quiet, sit still, and take in the message to the best of his ability.  How do you do that?  You practice.  And as far as Ryan's concerned, routine is key to understanding anything. In other words, we can't lock him up in a room until he's old enough to get it.  He needs practice.  We keep him in the service as long as the noise is low-grade.  In other words, when he's about to completely lose it we will remove him from the service to cool down and calm down.  

Really, think about it.  What anyone is saying with a glare is "You are bothering me.  Your behavior is interrupting me and my church experience. Please cut it out or leave."  And in in saying that, we place our importance over another person.  In other words, we're saying that "My experience is more important than your experience, and you should hurry up and conform because you're causing me discomfort."  

I guarantee you that nine out of ten parents, special-needs or typical, are doing their best to keep their child in line.  Even without someone exhibiting a distaste for my boy's behavior I'm honestly concerned about those around me.  I've come close to thinking it would be better for all parties involved if we just stayed home.  Over time, God changed my heart on that.  Ryan needs to be there as much as anyone else.  And I know I need it.  

In a previous church, we had a pastor who would, especially when he noticed me struggling to keep Ryan together in the service, seek me out after the service to tell me to keep my chin up, keep going, and that he thinks I'm doing a great job.  This is with my child half-crawling all over me, and after he started hollering during some pretty quiet times.  

I swear I grew a foot and my shoulders dropped from my ears when I heard that.  The tears I was choking back became tears of relief.  He handed the love of Christ to me in just a few words and just a few seconds.  I've seen it, and I believe, that when an attitude of love and acceptance toward others is not only expected by the pastor but is seen in his character, life, and ministry, that attitude flows to the rest of the church over time.   It is not solely his responsibility, please do not misread that.  We are all to be sharers of the gospel, and we cannot blame our mistakes on that one man.  Please, they have enough to worry with... they are in an odd situation, being sinners yet teaching as they are taught.  But a pastor who is proactive in this manner will bring about change for the better.  

In the same manner, an organized church, no matter how small, can minister to these children!  There is a great and growing need for churches to educate themselves and have a protocol in place for their Sunday school teachers before that child reaches the door.  Notice I said "before".  This cannot be retroactive.  The pain inflicted from a "sorry, your child isn't welcome here" is not easily smoothed over.  A church says that one time to a parent, and that parent will likely not be back.  Please hear me... this is crucial... that is a heart injury that cannot be taken back!  The only way to avoid this is preparedness.  

I truly believe that "let me show you where to go" should be the response, should a child be in the wrong place.  If the child is in the right age group (yes, they should be with their peers) and has a special need, this is where that protocol comes in handy.  This is where teachers need to be ready to ask questions and really listen to the answers.  Part of the protocol should be on-call volunteers throughout the congregation.  

On Ryan's first Sunday at our home church, to be concise, he had a rough time.  Hitting, screaming, yelling, rough time.  You know what?  We didn't find out until after Sunday school!  They handled it.  When the noise echoed through the halls, deacons descended, offering any help they could.  They kept Ryan safe, did their best to help him have the best morning possible, and everyone survived.  No one sought counseling or ended their teaching career over it.  He was, is, and will always be unconditionally welcome.  There is no "special needs ministry" in our not-that-old church.  The budget isn't ginormous. Because when a child is melting down, no amount of money helps.  It's hearts ready to carry the gospel no matter the cost that get the job done.  

 The thing people don't realize is that acceptance doesn't necessarily take that much work, and for true acceptance to take place everyone must be willing to at least extend a smile.  If you do already teach a  Sunday school class and haven't considered what you'd do, it's time.  If a child with autism hasn't walked in your class yet, depending on where you live, there's a 1 in 100 chance one will Sunday.  You can start here and then maybe go here.  You might even go here and give 'em a call (we visit there a lot).  When a child does walk into your room, take a minute to listen to the parents, talk with them about what they can expect and make sure you hear things like "he has to be watched or he'll bolt/wander" and "he's allergic to..." and "please be sure to avoid...".  They're not being paranoid.  They know their kid.  Honestly, anytime anyone blows me off or cuts me off, I know it's going to be the opposite of a good experience.  If the family is coming to the church to stay, or becomes a regular attender, please make sure to schedule a meeting to talk about how you can incorporate their child.  Share and listen alike.  This open communication is key in this child's success in your class.

And dear, precious church-goers, teachers, remember... and really read it, take a minute to let it soak in...

13  And they were bringing children to him that he might touch them, and the disciples rebuked them. 14 But when Jesus saw it, he was indignant and said to them, “Let the children come to me; do not hinder them, for to such belongs the kingdom of God. 15  Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” 16 And he took them in his arms and blessed them, laying his hands on them. ~Mark 10:13-16

It doesn't say "let the normal, easy to handle ones come to me".  

That protocol I'm talking about?  Most of it is a willing heart and a passion for the gospel.  Those deacons didn't know when they left the house that morning what they'd be doing.  They thought they were going to church.  

They didn't just go to church.  They made it possible for us to do the same. 

Thanks be to God for the willing hearts, and for you making it through another post.  Tomorrow, another side.

Wednesday, June 20, 2012

The Church Monster: The Mr. BlueShirts

This is the second installment in the "Church Monster" series... if you missed yesterday, you can click *HERE* to catch up.  Remember, the only thing I have to offer is experience, and the experience and issues I'm sharing are out of a heart to make sure even one more person isn't hurt.  Disclaimer over, on with the post...

You like a joke?  I love a good joke.  Here you go.  

So a family with a kid with severe autism walks in a church...

Oh, how I wish there was a punchline.  But the only ones I can think of just aren't funny.

We know, all of us who have a knowledge of the church at all, that this should be the most welcoming place on the face of the earth.  But to so many who are different, it's just not.  For those of you who attend, what would you do if you saw a scantily-clad woman walk in and plop down Sunday morning, right in front? Maybe a homeless person, whose presence you need not see to sense?  Possibly a young person with tons of piercings?  Someone covered in tattoos?  

Would you speak?  

Maybe you would speak, and it wouldn't be hard for you.  But what if you spoke, they liked you, and they wouldn't go away?  They were back the next week.  And the next.  Maybe you think their behavior, dress, and all-around demeanor will eventually change to fit your taste.  Maybe you eventually think it's time to try to call their differentness to their attention.  

Maybe you'd immediately shun them.  Maybe you can think of a thousand reasons to justify said shunning.  

Maybe you wouldn't be so passive.  Maybe you'd walk right up and politely show them the door.  Or maybe you'd even make friends with them, using the first available opportunity when you think you've earned the right to make suggestions,  maybe not so subtly.

There's always the chance that outer-differences don't bother you.  After all, these people can speak and you can learn their hearts relatively easily if you take some time.  Could be that they're pretty incredible people with incredible testimonies, forgetting for a moment that all our testimonies are miraculous.

Let's say you're in the set who can handle a different look about people.  Let's say you're completely understanding that you can't judge a book by its cover and never would!  But what happens when they don't just look differently than you?  What if they rock your boat a bit with maybe a touch more noise... maybe they raise their hands during singing, maybe move a little more than you're accustomed?  What if that sound was a hum, grunt, or moan?  The occasional random phrase uttered in a normal speaking voice?  What if they looked perfectly normal, but couldn't stop making a low-grade sound?  

What if your kids were watching, and you were having to tell them they couldn't act the same way? 

Nothing inherently wrong or unhealthy, just not the same.  What if they can't change?  What if they look a lot like you, dress like you, but tend to be very noisy, occasionally wiggling about and hitting themselves in the head or chest?  Let's say you introduce yourself, and said child doesn't look at you, but instead looks out the window and flaps his hands?  Worse yet, what if they say something loudly that is completely random?  What if you have to work to get to know them?

I know the differences in these things are pretty vast. There is a lot of ground between the people I mentioned first and people with disabilities.  But from my experience, there are a lot more far-reaching efforts to touch the lives of those who can eventually talk about it.  Who are capable of understanding and adopting our cultures.  

The heartbreaking, unfortunate truth is that people with special needs kids have been turned away from churches.  If not turned away point-blank, then almost studiously omitted until they get the hint.

What?  Not my church!  Surely not here.  We are so accepting!    

Find yourself asking that?  Find yourself thinking, "This wouldn't happen here?" Then finish that sentence.  What would you do? Really?  Now look around next Sunday.  Make a note to think about how someone like our Ryan would fit.  Or even start with a neurotypical noisy child.  I've come to learn that, in many situations, if you're not part of the solution you're part of the problem.  I used to think that this didn't apply to special needs family ministry. But if you're thinking that you shouldn't have to, ever, be uncomfortable... or maybe that this is a pastoral problem, not a congregational problem, you might be part of the problem.  

The kicker is that it's not just a pastoral problem.  It's not just a congregational problem.  It's everyone's problem.  

Yup, you read that correctly.  The pastor is only one man.  Even if you have three pastors, that's only three men.  The deacons and elders are limited, too.  The heads of boards and committees are limited, too.  Having visited churches since I was in college to find which one to attend, I can tell you from a visitor's perspective that the people sitting around me always made more of a difference in whether or not I returned than the usher's grin as he handed me a program (or not).  That said, it does make a huge difference if the expectation in the leadership is steeped in the love and acceptance of the gospel.

We were recently visiting a church on vacation.  We've been there many times, and there is a well-established special needs ministry that runs, as far as we can tell, quite nicely!  During the service, Ryan never started to fuss.  He didn't scream out, or even yell "juicy red sucker" in a stage voice!  We thought he was doing well.  He stayed in his seat.  He was, however, saying "people train" and "play with trains" in a regular speaking voice.  Not loud.  Not demanding.  

The gentleman in front of us began turning around glaring at him every time he spoke.  

The first time, I let it go.  No big deal.  Maybe he was looking at the clock.  Could have been stretching.  No need to make assumptions. 

Then, over and over, this man made sure we knew, albeit silently, how disgusted he was with our child's behavior and our lack of ability to stop him.    

I wanted to cry.  Then I had the normal mama bear reaction, thinking of in just what terms I'd educate Mr. BlueShirt.  How I'd make sure he knew Ryan couldn't help it.  How I'd defend my sweet boy.  He was being so good!  How dare this man seek to scold my child and my parenting with his nasty glances?

When the service ended, and I mean before the last chord from the organ finished reverberating, he practically ran from his pew, down the aisle, and out the door.  When we were able to visit, everyone with us saw it.  

There are so many struggles involved in raising kids, but honestly, having a special needs child is an extreme form of parenting.  Whether the needs are medical, physical, emotional, mental, behavioral, or otherwise there is a crazy amount of stress and work than goes into our kids.  Having kids at all tends to take over one's life, but having a special needs child, well... the ups are higher and the downs are lower, and from our experience, they're closer together.  Eric and I have often noted to each other that this would be impossible without the grace and mercy of Christ.  So why would we not do what we can to share?  Shouldn't those who need this kind of loving embrace find it in the church?

Honestly, the attitude that this person exhibited hurts.  We're blessed to be deeply rooted in our faith, and believe strongly in teaching our children to be a part of the body.  As rooted as we are, we have had times when we didn't know how much longer we could handle the swim upstream that autism in church can be.  But thankfully, we feel compelled be in church somewhere.  Eric and I talked about that recent experience on the way home, and decided that the experience was an expression and reminder of many, many things.  The thing that was impressed upon me the most is the universal need for acceptance of this kind of thing.  Ryan looked old enough to know better, when in reality he can't help it.  No matter what you do, there will always be a Mr. BlueShirt.  But there are people out there, both believers and non-believers, who are getting hurt by churches and church-folk, and that in itself breaks my heart.  

The sad truth is that while there are a lot of great churches with great special needs programs, even in churches with healthy special needs programs with dollars and cents behind them.  In churches of all shapes and sizes, people are being hurt, judged, and in more severe cases, turned away due to invisible disabilities.  It happens.  There's got to be a better way.  

Stay Tuned. 

Tuesday, June 19, 2012

The Church Monster [Prologue]

I started this post months ago.  Every now and again, I come back to it, add something, and close it.  Every time, I shake my head not just at the situation, but at myself for thinking I might be able to help make a dent in it.  Each time, I put it away and think that maybe it'll do more harm than good... maybe this is just one that's too big for me to tackle.  But I can't shake it.  It's too close to our hearts, it's so much of our lives, and it won't leave me alone.

What makes me decide I have to do something about it now, you ask?  An experience I had recently, coupled with an article from Christianity Today this weekend.  But before I tell you about it, before I open this bulging can of worms, please do me a favor.  If you're interested in mudslinging, taking sides, and judging others... or even in looking through this post to make calls on how we choose to do things, please note that no angry, ugly comments will be tolerated (not that my regulars would do such a thing, but this is the internet, folks).  As a matter of fact, they'll be deleted.  Hatefulness is quite non-productive.

The purpose here is to bring more of the issues to light.  No part of anything I ever post is intended as fodder for rumors or to paint anyone in a negative light.  The truth is that not one of us can call ourselves clean but for the blood of Christ.  I feel very strongly that many people make decisions based on a lack of education on a matter, or education on the way to deal with said matter.  What I do here is share my heart.  I share my heart and our experiences for several reasons, but one of them is decidedly that someone, somewhere, might have a heart change about any of the topics I cover.  Another is because I benefited so much and still do from other parent blogs on autism that I feel compelled to pay it forward. All that coupled with the fact that I believe that every experience that God gives us is His to use... so I lay these things out so that someone might find education, comfort, hope, or a kindred spirit.  Maybe it'll even start some healthy discussion on how we can work on this.

Because it's going to take all of us.

To all you special needs parents and grandparents, I hope you can find some understanding here.

To all you pastors, youth leaders, worship leaders, education ministers, children's ministers and the like, I'm humbled that you made it this far.  The fact that you're interested in this is encouraging!

To all of you who attend a church, you are more important than you think.  Just being in the pew makes this relevant to you.

To those of you who have sworn off church by the way someone has hurt you, or some church has hurt you involving your special needs child/grandchild/friend/friend's child, I'd be honored if you'd hang in with this series.

I've broken this one into sections... a nice, short little series, if you will.  I don't have many answers, but I have found some relevant questions.  I've found some of them the hard way, some of them between reading and listening to others' experiences.  Don't worry, I'm not into sharing names of anyone other than my immediate family.

Buckle your seatbelt.  The ride might be a little bumpy, and it might not be terribly eloquently presented.  There might even be a few *gasp* typos.  But it's too important to leave alone.

Meet me back here tomorrow, and we'll get with it.  Might be two days, might be three.

Thanks again from the bottom of my blood-pumping muscle for reading.

You who read may very soon change lives.

Thanks be to God for you!

Sunday, June 17, 2012

Fathers in Pictures

Happy Father's Day to all my fathers... I'm one blessed girl.  


My Grandad, my mother's father, and Ryan
My Dad, who asked me out on a date along with my Mom, and stuck around!

Still so thankful that he loved me like his own, and loved my Mama.  


Happy Father's Day in heaven, Dad.  I hope you got to log some time in a floater on heaven's river today. 


My husband's Dad, also my Daddy now... also because loves me like his own. 

Grampy and his little namesake (Richie)


Grampy and his oldest grandkid, Ryan


Grampy and his little Maelynn girl

Grampy, Richie, Eric, and Maelynn at the kids' baptism

All three of these men have taught me a ton.  Ranging from how to ride a bike, swim, multiply, bait a hook, change a tire, and back with my mirrors to the providence, sovereignty, love, grace, and mercy of God and its relevance to every inch of our lives,  One of these men has been robbed of much of his mind by dementia, one is in heaven too soon, and they're both missed a ton.  The other is thankfully still here, loving his wife, children, and grandchildren... and making us laugh a lot, too!  

Then there's the man who is a father because I'm a mother.  It's hard to put into words how grateful I am for his presence.  I wouldn't want to parent with anyone else.  I wouldn't want to share my life with anyone else.  Just scroll down... you can see the love for his kids in his eyes.  

Eric and Ryan
 He loves us as his Dad taught him to love... as Christ loves the church.

Bein' silly... it's what we do best. 
 He isn't afraid to be a little silly to get his kids to laugh, and the best thing to ever reach his ears is the sound of his children's laughter tickling his ears.

One proud daddy
There are things he used to love to do that he's gladly put aside to spend time taking care of and having fun with our family.   He works so hard for us, but always makes time to play.

Teaching Ryan and Jedi to play video games
Words fail to tell you how elated I am to have a man who our boys can look up to.  He isn't perfect, of course, but isn't afraid to admit he was wrong and apologize, even to the kids.

Daddy and his boys

Daddy and Richie enjoying one of the finer things... pizza!


Equally as amazing is his heart for our daughter.  She is growing up knowing her daddy thinks she's beautiful, smart, sweet, and fun.  Her daddy loves her so much, in fact, that he will look past her curls, long eyelashes, and pleading and correct her appropriately when she needs it.  After all, beautiful inside and out is the goal for all of us.

Daddy and his brand-new princess

Daddy and his brand new princess her first time at church

And he's a rockin' special needs dad.

I can't tell you how much time he's spent looking for just the right apps for the iPad, and that's after giving it to Ryan when he won it in a raffle.  All he needed to know was that they were helping kids with autism make great strides.  He supports me as we partner in advocating for Ryan, and many times stands up when I'm not able.


He's the kind of dad who loves his family and wants to be with them, wherever he goes.  It gets rough sometimes, but times like this are worth it.


Swimming with the fishes
I'm so proud of Eric.  He's not just an awesome daddy, he's an awesome special needs dad.  He loves his kids and leads our family and loves me in such  beautiful way.  He's not just the master of even the yuckiest diaper (or pull-up) change and the king of making the kids giggle 'till they drop, he's my best friend and I'm so very glad.  

Big shoes to fill
As Ryan found out the other day (even with his flip flops on), Eric leaves big shoes to fill.  

I love dearly all the dads in and out of my life, and at the risk of getting any more wordy...  

Happy Father's Day.   

Thanks be to God for the dads in my life.




Saturday, June 16, 2012

Our First Movie

If you keep up with us at all, you know family outings aren't always peachy.  Usually a meltdown is expected, and sometimes there's just a low to mid-grade fuss the whole time.  We're pretty used to resigning ourselves to trying something as a family.

We wanted to try something new.  My sister, last weekend, told me that she'd looked up special needs showings of Madagascar 3 in OKC, and there were none for last weekend. There was one, however, this weekend close to Eric's parents.  Eric looked it up, bought the tickets online, and the whole time I'm imagining the worst.  I worried about it last night, and it was the first thing I thought of this morning.  When we told Ryan our plans, social storying to death as usual, all he said was "PEOPLE TRAIN!!!  You will ride the people train!"

Ugh.  Are we really gonna do this?  Everything in me was screaming "Red alert!  Bad idea!  Horrible experience ahead!"  This time, the voice didn't win.

Packed and ready to go, complete with pooled dollars for popcorn and bottled water in the backpack, we headed out.  The theater was easy to find, and after a bit of a jog to a real person instead of a kiosk, we snagged our tickets and headed in.  Ryan waited well, and so did the littles, through the lines for tickets and popcorn.

The theater was mercifully empty.  There weren't a ton of people there, although there were a few other families.  We found seats in the back row of the front section, the perfect place for us.  Nothing between the kids and the screen, but not too close.  Richie announced that he'd like to go potty, and I took him.

When I returned, just in time for the movie to start, I stopped fearing that this would be a kinda expensive and noisy mistake.

Ryan kept repeating "Wow" in his newscaster voice as he gazed at the screen.  Richie and Maelynn were equally as enthralled.  Once the movie was well underway, we kept thinking that surely he'd lose it.

Not once.

Other than asking to have his little popcorn cup refilled, he didn't make noise!  He didn't offer to get up.  One time, toward the end, he decided he'd rather stand, and it took one reminder to sit and he sat.  The littles were great, too!  Mae was wiggly, but she's a two-year-old busy little girl.  And I was excited, as were the kids, that there were trains in the movie!  We LOVE trains!

I can't explain to you how amazing it is that we made it, relaxed and content, through the whole movie!

But the most amazing part came when the movie was beginning to wind down.  The "Move it, move it" song was remixed with a line from the movie into "Afro Circus Remix" and it was colorful and cool!  When it came on, Ryan hopped up and began hand-flapping and humming and grinning ear to ear.  Then he began dancing with an abandon we hadn't quite seen in him!  Some of the other parents, whose kids had a great time watching the movie too, smiled as they watched him so thoroughly enjoy the music.

And the tears flowed as I watched him, so proud and bursting with relief and excitement.  He loved it!  Then, Ryan suddenly turned around, threw his arms around my neck and said "Smile!"

Blessing isn't the word.  This experience was next to life-changing.  We may have found something that we can do as a family and all enjoy, and that's great.  But watching the way not just Ryan but the whole of these special needs kids enjoyed this movie on a completely different level than we did was incredible. Some of the children were excited and ran around a bit, but not in a distracting way.  Some of them yelled out every now and again, and there was other movement and a bit of noise.  But honestly, it was no more than a regular Saturday showing with typically-abled kids.

Then I couldn't help but think of worship.  The different facets of worship, the realization that worship isn't defined as or relegated to music, a service, a certain way of putting on a service, or any program, is one of the most important things God has used Ryan to teach us.  Worship is a way of life.  It's a minute to minute growing of appreciation and love and living in a way that exhibits the faith, love, hope, peace, and gratitude God has given us.  It's an attitude that reflects God's countenance.

Because he's our Father, and he loves watching us enjoy.





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