Saturday, June 29, 2013

Two Days, Two Ways

What a lovely day. Favorites for breakfast, lots of train play, lots of swimming, a kiddie favorite for lunch, and (as Richie used to call it) Pun Poo Panda. And the house smells like the apple pie I've been meaning to make. :-) So thankful. ~My Facebook status this afternoon

It's been a beautiful day with the kids.  There are some days I wonder if they'll look back and think fondly of their time at home, but other days, I'm pretty sure they will.

We woke to the pattering of kiddie feet into our bed.  Maelynn, then Ryan, and finally Richie all crammed in a mega-family-snuggle.  It's those moments that upgrading to a king size bed from the queen that came with Eric feels a bit like a need.

We piled out of bed, kids playing and letting adults have a bit of coffee.  The rest of the morning was full of the smell of french toast, sausage, eggs, and potatoes.  After a long, nice brunch, we tooke the kids out to swim.  The tree outside the fence welcomed us with a nice shade, so we were able to stay out for quite a while.  While the kids were still hanging out in the pool with Daddy, I got out and used the time to dry as time to get some water on the garden, still in the shade as well.

Once dry, I went in the house, threw some grilled cheese on the griddle, and we had a nice lunch.  After lunch, the littles had some play time while Ryan enjoyed some iPad.  After a while, we decided we'd have a movie so we'd all be in the cool air of the house in the heat of the day.

While the kids watched the movie, I worked on the pie.  And now, while it's in the oven, here I sit.

Sounds great, right?  All those statements are true.  Not one of them is a stretch or a lie, but let's take another view... or choose another perspective, just for the sake of reality.

Ryan came to bed with us after Mae crawled in around six.  He stood there, looking at the alarm clock that I stubbornly refuse to unplug or at least set.  Well, maybe I'm just too forgetful.  Either way, there he stood, reading the time and stimming while I held the covers to let him snuggle.  All I could think was, "Come on, dude.  Just come on."

Hearing the play of the smaller ones, Eric and I finally rolled out a few minutes after they decided the snuggle was cute and all, but the moment was SO over.

From the time I uttered the words "french" and "toast" the kids were all hollering to eat.  Ryan started to almost melt down over the idea of one of his favorite breakfast foods.  In the flurry to get the kids' breakfast made, I didn't get our breakfast started until after they were eating.  And I almost incinerated it.  I didn't, but came close.

By the time we finished eating between jumping up for this and that for the kids, keeping Ryan for bossing Richie too much on the train tracks, and generally keeping the peace, it was nearly noon.  Ryan has strong feelings about which train goes where, and although Richie adores his brother, it's starting to get hard to take when he's told that this train can't go there right now.  It really hurts when Ryan yells at him and screams, "Richie will leave!!!"

We did finish eating, having fought to take our time, and decided it was time to get these kids outside.  After thirty minutes of swimsuit locating, slathering with SPF 50, and all the squeezing into suits, pulling back of hair, and earplug inserting, we made it outside.

It was a pretty great run in the pool, but freckled with frustration.  I had the audacity to get on Maelynn's coveted pirate ship and float around.  Richie's blasted earplugs kept coming out, causing us to stop, get him out, dry his ear, get another plug placed, and get back in.  Then there was the ever-popular beach umbrella to mommy's mouth.  That's right, folks.  Not a leaf moved until a gust big enough to uproot the beach umbrella and pop me right in the mouth.

Deciding I was pretty much done after that, I got to watering and pulling weeds.  Other than the giant indiscretion our Australian shepherd committed so close to the garden that I couldn't hide from the smell, that went pretty well.

The kitchen was a disaster, but since the kids all like grilled cheese and the griddle was still out, lunch was easy.  After the atrocity I ate for brunch not that long ago, I decided a piece of fruit and peeling, cutting, and coring apples was great to go with the family's lunch.

As the kids came in, Ryan had a random screaming, hitting fit (well, seemingly... Eric couldn't put his finger on any one reason).  It wasn't his first of the day, and it wouldn't be his last.  But such is life.

Once the chorus of whining ended, the kids sat and ate their food without a fight.

When they were through, I had the nerve to suggest ice cream instead of cookies to Ryan.  Whoops.  Another upset.

Deciding to watch the movie at last, Ryan did his usual outcry of "NO MOVIE!!!"  When it wasn't his idea, or wasn't something he would have picked, that's what we get.  The usual response is "You're welcome to go to your room or the kitchen, but this is what we want to do right now."  The usual is what he received.

Now I sit here, typing with arms under the weight of 80-lb eight year old legs.  The legs are quieter than the other end, though.  Random shouts from the game he's playing... still playing... jolt me now and again.  And I still have to find something for dinner.  As I type, Ryan is repeating "hot pizza for dinner, Mom!"  Yeah.  No go there.

Any one day, either of these descriptions comes quicker than the other.  To be honest, the second is the natural place my mind and heart run.  Ugh. More yelling.  Ugh.  It's hot.  Ugh.  So many dishes.


Don't hit that little x yet.

Too much lean to either way, and too much truth is left in the dust.  Over-optimism, insisting that we can do it, we just need to try harder or have more faith, or completely ignoring the not-so-good stuff isn't healthy.  On the other hand, reporting only the things that we had a rough time with while leaving out all the good isn't the truth either.

These descriptions of the day are both truth.  Both of them are accurate.  Everything happened that I noted.  It happened as close to reality as I could word.  Both times.  But today, my first description of our day is what I was feeling.  It's been a pretty good day.  There are other days that aren't so positive.  There are days that all I would see is the screaming fits or the other hard things, seeing through grayer glasses than I do today.

I wish I could tell you that you can simply choose how to see it, but if I tell you that, then it means that maybe I have that ability.  I do not.

I make mistakes... okay, mega, colossal, not-cool screw-ups... that warrant apology to my kids and my family.  I react in a way that I'd hope no one every finds out about at times, with my voice too loud and words too harsh.  And try as I might and will continue to try, I just can't always be joyful, happy, cheery Mom who doesn't mind that you just colored all over your new shirt with your marker.  I don't always think it's adorable that Maelynn has covered her leg in marker, insisting that it's a cutie mark (thanks, My Little Pony).  I certainly don't always react smoothly when Ryan screams out in the middle of quiet, just to make noise... but also scaring the DOG out of me.

Funny, for someone who believes that Christ covers her every sin and black mark, I have a hard time forgiving myself for these.

I wish I could say I was making some dramatic new resolve to forgive myself more and be less judgmental of everything, but that's nothing new.  It's worth re-setting my mind on, as much as I can, but in reality it's not a one-time decision.  It's an every day, every minute coming back when I fail and starting over thing.

It's a being grateful for the grace I'm receiving kind of thing.

It's feeling the relief of the grace and mercy of Christ, even though others may not have it to give, kind of thing.

It's realizing that we're human, and in our humanness, we're going to do stupid things.  We're going to do things that we think are smart when they're really stupid!

So rather than wrestle which of the day-descriptor perspectives is best, I'm going to forgive myself for feeling hypocritical when I chose optimism today.  And again, I'm going to fall back on the greater truth that I'm covered... and for the heart and eyes to see that truth.

And I'm going to do it all again tomorrow... no, in five minutes when I get up to make dinner with the boys chasing each other through the kitchen and Ryan hitting himself and screaming because he's fed up and doesn't know how to say it... with the courage that comes from knowing it's not a shock to God when I trip and fall, or when the beach umbrella hits me in the lip.

Thanks be to God for it all... and especially for the safety net to try again.

Friday, June 28, 2013

Elevator Flattery

"Imitation is the sincerest form of flattery." 
~Charles Caleb Colton

In yesterday's post, we visited some of Ryan's behaviors.  Things he does that set him apart from other eight-year-olds and most of which serve as red flags or hallmarks of kids with autism.  Mostly things like watching shows aimed at kids much younger than himself and showing little to no interest in anything new or age-appropriate.  

Then there are things that amaze me.  

This kid loves to draw elevators.  And not in a "wow, that looks just like an elevator door, how cute" kind of way.  He draws what he perceives as the floors, the buttons, the labels for the buttons.  He draws the panels inside, again in his own fashion.  

Here he is, drawing in the van.  Check out the squares with numbers going up what looks like a pole.  That's the elevator car, and those are the floors on which the elevator could stop.  And see that marker in front of his face?  That's a stim.  He flaps his other hand and uses the hand with the marker to shake the marker in front of his face, up and down rapidly. 

See those stick figures?  Those are Ryan and Mommy, according to Ryan.  So thankful for a boy who loves me. 

This was the finished product of the morning.  I managed to snap a shot of it just seconds before he erased to start the afternoon's work of art. You'll notice that he doesn't like having other people on the elevator with us.  

Can't forget... notice the use of up and down arrows, just like buttons on a real elevator.  

These white boards stay on my table.  He walks up, draws a little, and walks away.  I think we finally convinced him to cap his markers when he's through.

It's honestly amazing to me, being able to see into his head a bit.

Usually, while Ryan draws, Richie and Maelynn are off playing or watching TV, or are off on one of their swashbuckling adventures as Jake and Izzy.  This morning was different.

As I walked by, in a bit of a flurry to get to a doctor appointment for myself, I heard Richie say,
"Look mommy!  I'm drawing elevators just like Ryan!"

And indeed he was.  

Not yet out of his pajamas and barely past five, he and his sister both sat there not just accepting and loving their brother, but showing him exactly.  The depths of their love and adoration for their hero squeaked out on the smooth white board.  

Quite naturally, they spell out what I need to hear.  

Different?  What's that?  Without so much as a thought to why he's doing what he does, they dive in and work alongside him.  

I don't know what it's like to grow up with an autistic big brother. I don't know if it's hard, or how it's hard, or how things will go later.  But for now, this beautiful, natural outpouring of adoration is a great example for how I should love.  

Thanks be to God for these three and for the lessons they teach without a lesson plan. 

Thursday, June 27, 2013

Is it Weird?

I'm not sure what eight year old boys are into, but judging from friends' kids and even the age suggestions on toys, I'm pretty sure that it's not Thomas, Elmo, Choo Choo Soul, and Big Block Sing Song.

Right now, the kids and Eric are having a little after dinner YouTube time with Big Block Sing Song. The funny part is that he kept jumping up and down, hollering "Bigblocksingsong" over and over until we finally ran across it on TV one day.

It's deliciously adorable how he jumps up and down, giggles, and flaps his hands.  It's even more adorable when the excitement bubbles over into a little humming.  There are times in movies where, at times set by Ryan, he leads the three of them in running around the living room.  The littles follow him, squealing with delight.  

He's safe here to enjoy what he loves.  None of these things are illegal.  None of them are bad for him... I think.

At what point do we start being concerned for how he is viewed by others in what he likes and how he shows it?  There are schools of thought that highly recommend doing everything we can to cut out this behavior as much as possible.  We were taught at the beginning that this is undesirable.  Hand-flapping and other forms of stimming are harmful and should be squelched as much as possible.

For a while, we did try to get him to stop.  When he was about 2 1/2, when we were just getting acquainted with the idea that our son's behavior could warrant a diagnosis, we panicked.  We followed what they said as much as we could.  I remember even then being unsure, although we learned so much from the behaviorist that ECI sent.

I remember a specific moment at Eric's folks' house when Ryan began stimming on a ball that was spinning on the table.  He was hand-flapping just a little.  Nothing scary, like the first time I really noticed the behavior, just a little.  My father-in-law asked if, while they were caring for him while Eric and I went out, if they should stop his hand-flapping, and I had more of a defining moment in that answer than I realized.

"No, it'll be okay."  I'm sure I also mentioned something about redirecting his attention.  

Since then, we've learned to limit not the behavior but what is causing the behavior.  If he's going a little overboard on some sort of stimuli, we can tell by a mix of the look on this face and his stim.  If he needs to back off, we do our best to transition him, which involves setting a timer and letting him know that he has so many minutes.  When the timer goes off, he is pretty good about giving up whatever it is.

So should we stop the stimming altogether?  Are we hindering him by allowing his hands to fly?  We don't think so, but we don't know for sure.  We do know that there are far greater problems... as my Nanny would have said, "We have much bigger fish to fry."

Indeed.  Just as I typed that last paragraph, I heard Ryan come into the kitchen beating his chest and grunting, turning that into a gruntish yell.  When things don't go his way, this is how he responds.

When I hear it, I have to tell you... my ears actually hurt.  I can feel them tighten right along with my heart.

It's loud.  It's hard to deal with in public.  It's inappropriate at school.  But the worst?

It's the sound of frustration I can't begin to understand.

It's the sound of anger.

Earlier tonight, when he didn't finish his dinner because I bought a different type of ranch, he put one of his hands flat on the table and pounded it with his fist.

That, my friends, is a bigger fish.

I'd far rather see his hands flapping to either side of his head, enjoying whatever while fingers fly, than to see his chest red and purple from being beaten by his own fists.

I'd rather he look a little weird while he watches a train go by at the museum than have him pulverize his own hand with his own tiny, angry fist.

This is where the rubber meets the road.  This is where I wish we could have every person who ever deals with him live here for at least a week.  See who he is.  See his highs and lows.

Because once you've seen him in the self-violent throes of anxiety and frustration, you don't care that he's watching a show geared to three year olds.  You're relieved and delighted and rejoicing that he's happy.

And besides, you can't teach a dog not to wag its tail.  And why in the world would you, anyway?  Because he doesn't wag like the other dogs?


Stim on, little man.  Stim on.

Thanks be to God for our little stimmer; our little hand flapper.  For he has taught us to enjoy the world as it is, as we are, and how He made it.

Monday, June 24, 2013

Call it What it Is

There's a lot of talk around the blogosphere about the word.  So many people are divided by it.

"Person-first language" they say.

"He's a person, he's not autistic."

"Ryan has autism," they say, "it does not have him."

Well, if you'd been outside our church service yesterday when I merely told him to go straight to the van instead of playing on the hill, you'd feel differently.

I've read about the debate from different angles, and I can see the reasoning in both sides.  After careful consideration, here's what I think.

He's Ryan.  He's autistic.  He's also silly.  He's caring.  He's blue-eyed, brown-haired, and he's a native Texan.

All those things describe him, including autistic.

You can use any word to hurt.  With the right spin, motivation, and heart behind it, so many words can hurt.  I'm not going to say that someone saying the word "autistic" never shot to my heart.  But it's not the word, in retrospect, that hurt.  It's the feeling, the intent, behind it.

If used as a descriptor to make fun of anyone's behavior, "autistic" stings.  That's my boy you're using to make fun of another person, and it's not cool in this mama's book.

If used to identify me, Ryan, my husband... well, it's the truth, right?  Again, the heart behind it can hurt, but when you just want to know if I'm the mom of the autistic boy in a group of kids, why yes, I am.

And that's okay.

"Autistic" is a word that, with other forms, has been a key to unlocking Ryan.  It's been the ticket to services we need.  It has helped us understand him, relate to him, and learn to love him in a meaningful way.

If you know a friend who is bothered by this, by all means respect that this hurts them and use language they deem appropriate.  But from this family to anyone who would like to talk to us, ask questions of us, go ahead.  He's autistic.  It's not the word that hurts.  It's watching him struggle.  And if you want to know more about him, that's unlocking your understanding and awareness of him and others like him, and I would not slam that door in your face for the sake of terminology.

There are times that autism is an albatross.  There are other times that we look at him and thank the Lord for bringing us into this, because honestly we're better people for it.  Do we wish he didn't struggle?  Yes.  Absolutely.  But autism... being autistic... is not like having a cold.  It's not going away.  It explains his behaviors.  It's part of who he is, whether I like it... whether advocacy groups like it... or not.  And with all the stress in my life, in his life, and the life of our family as a whole, I just don't think fretting over terminology helps.  The word and so many other things, like choices between therapies, diets, and the like just further divide a community that so desperately needs itself for support and encouragement and empathy.

So if you talk to us on a regular basis and you've heard that "autistic" might be offensive, we're one less family to be concerned about as far as that goes.  We're quite proud of our Ryan, autistic and all.  Go ahead and say it, it's cool.  Because that may be the key to you seeing Ryan beyond autistic, too... and he's far too awesome to keep to ourselves.

Thanks be to God for our all our kids, the brother and sister of the autistic boy and the autistic boy himself.  And for all of you who choose to take a step into our world.

Thursday, June 20, 2013

Elevating Fail

In my last post, I told you all about our last visit to church with Eric's parents.  Click here if you need to catch up.  

Well, almost all about it.

The breakthrough in the service was awesome.  The sermon was great and challenging, and I actually got to hear most of it.  Ryan was calm and even allowed me to snap a picture of him while we listened to the postlude.  

Adorable, right?  So proud of that kid.  He was so great during the service.  So great, in fact, that he earned the coveted ride on the elevator after the service.  

There was a congregational meeting following the service, so we scurried toward the exit following the postlude.  They were just starting the meeting when we hit the door.  About five steps outside the door, we saw and elevator. We were still close and the door was still open, but we were golden.  He'd done so very well, and now it was time to celebrate with something he talks about as soon as we mention going to Grammy and Grampy's, and even randomly in between!

Hey Ryan, let's have that elevator ride!  C'mon, buddy!  

What happened next floored me.  It was another sharp curve, a stomach-turning descent.  

Ryan screamed... and I mean SCREAMED... NO.  Not only that, he recoiled.  

Alrighty then.  

Eric and I looked at each other, wondering what in the world.  We decided not to worry about it, that he'd been talking about a white elevator and this one was kinda stainless steel-looking.  In our world, little things like that are life and death.  So we continued toward the preschool floor to get Richie and Maelynn, remembering that there was a white elevator on the way.  

As we approached the elevator... the white one... I tried again to get Ryan to ride the elevator.  Yet again, he dramatically declined.  This time he curled into me, covering his face.  Still as befuddled as we could be, we stood there for a couple of minutes to give him another chance.  Nothing doing.  

Ryan seemed happy to continue on to get his brother and sister, so we carried on.  Eric took Ryan back to the van and I went on to get the littles.  It's hard to take Ryan to pick up the kids, because his interests  in play draw him sharply to the kiddie toys in the preschool rooms.  Add to that zero inhibitions, and it can be interesting to just keep him from bum-rushing the rooms and the unsuspecting kids and teachers within.  

Both Richie and Maelynn had wonderful mornings, and I headed to the van hand-in-hand with them, chattering happily about their morning and where we were going next.  

Then I got closer to the van.  

I could hear him from at least three or four cars away.  We immediately picked up our pace to make it to the van as soon as we could. 

He was in full-scale meltdown.  Hitting, crying, screaming... all because he didn't get to ride the elevator.  

We stayed calm as we've practiced doing.  He got out, because you're not allowed to scream and generally freak out in the van.  Gotta have a boundary somewhere.  We stood on either side of him, trying to stay calm and remind him that we gave him chances to ride, and he refused.  

The boy who just completely rocked the worship service was completely apart.  He screamed, cried, and hit.  We calmly reminded him that he had more to look forward to, that we were going back to Grammy and Grampy's for a while.  Nothing seemed to help.  For fifteen to twenty minutes, we stood there while he melted down.  

At this point, it isn't the people looking at us that bothers us.  We were making a LOT of noise.  It was a scene, no doubt.  It wasn't time.  We had plenty of time.  

It was indescribable frustration.  

We tried to treat him for great behavior.  He didn't want the treat he'd talked about for a long time.  Then he got back to the van and realized, I guess, that he made a mistake, and instead of using words to express his disappointment, he exploded into a thousand pieces.  

When he finally found peace again, Eric and I sat in the van ourselves, taking a moment to pick the shards of shrapnel from our hearts.  It hurts, folks.  To watch your son hurt like that... to see him drowning in a swirling torrent of anger, fear, and frustration and have no way to rescue him but act calm yourself... it's crushing at best.  And then there's the doubt of the way to handle it.  There's questioning everything, but at this point, we both pretty much look at each other with a shared pained countenance and repeat something like "It's okay, honey." 

But it's not okay.  

He did so well.  So very well.  We wanted to reward him.  The reward ruined his experience.  Ugh.  

I'm sure we did the best we could.  There may have been other things we could have done, but we don't know about them.  

Sometimes there's nothing to do but the best you can do.  

On the way home and for the rest of the afternoon, we rehashed the events, deciding that we did our best.  And in all the worry of the last thirty minutes of the experience, guess what?  

We almost forgot about the breakthrough.  

In the disappointment and pain of riding out a meltdown with Ryan, which is very real and needs dealing with, we almost forgot what happened in the service.  

The funny thing is that the excitement of the blessing didn't take away the pain of the frustration.  They don't cancel each other.  The blessing and the frustration and challenge are both parts of life that operate in their own way, carrying their own functions.  

I will not pretend to understand this.  I will, however, tell you that remembering the blessing encouraged us.  In the frustration and fear of the moment, the reminder of the breakthrough of Ryan whispering for the first time encouraged us to keep going... that we just don't know what's around the next bend.  

It continues to hurt to watch Ryan self-injure, and to see his face tightened in the agony of the moment, hot tears pouring over his cheeks.  It continues to frustrate us that something as simple as going to a convenience store or for a walk takes so much planning and preparation, and that even with the careful planning and preparation there's still a 50% chance, at least, that whatever we're doing will go down in flames.  

But we keep going because of the love that God places in our hearts for our children.  We keep going because he's amazing.  Not because of the carrot of a huge breakthrough.  Because he's Ryan.  And he's our boy.  

Thanks be to God for keeping me going for the same reason. 

Monday, June 17, 2013

Granted, They're Tiny

Hurrying up the aisle, I hoped they'd all be sitting there together.  With everyone standing for a hymn, I could only see my thankfully tall father-in-law.  It took a while to settle Richie and Maelynn, because in a church this size, there are a lot of little kid rooms to sift and make sure they're in the appropriate place, and I absolutely hate walking in alone, especially late.  

Everything echos in that place.  It's lovely, with stained-glass windows flanking the pews, a glorious-sounding choir, and my personal favorite... a real organ with someone who knows how to play it.  These Sundays are interesting. 

Eric and I greatly look forward to visiting his parents' home church.  While we adore our church and its culture, we enjoy visiting this place that also happens to be the church that planted our church.  Not to get complicated or anything.  But with Ryan, something as simple and commonplace (well, in Texas anyway) as going to church with your parents can be a nail-biter.  

As I made my way toward Dad, I couldn't hear Ryan... which was good.  But I couldn't see either.  They could be out in the foyer calming down.  

They came into view, sitting snugly together while the rest of the church stood in worship.  This is a battle we don't fight.  In our own church, usually one of us stands while the other sits with Ryan.  If he's doing really well, we can both stand.  Ryan, however, will generally sit or lay in the pew or chairs.  

The hardest thing about worshipping here is the acoustics.  

Our church is quite a bit smaller and younger, so our building, while adequate and beautiful in its own way, is not even close to as large as this place.  And with hard floors and a high ceiling, seemingly every little pin-drop echoes.  

Insert child who has a tendency to blurt random things at inappropriate times, and you've got a recipe for stress.  

I must say that he's been doing better at this at church as a whole.  Even at home, I'll be working on something at the kitchen sink and he'll holler numbers out of nowhere.  Then there are the random times he just starts yelling, grunting, and smacking his chest out of nowhere.  We're talking frequently, folks.  Not just every now and again.  All.  The.  Time.  From quiet to BAM!  Hope you brought a change of pants, Mama.  

When my baby sister was little and I took her to church, I could whisper to her to be quiet and she'd either obey or copy my whisper.  No big deal.  Of course, I could also give her a look from the choir and she'd clam up and elbow her friend to do the same... at five years old.  Richie and Maelynn pretty much follow suit with that as well.  But my big boy?  The only time he whispers is when he's answering a question.  

Yeah.  Handy, right? 

Knowing all these things, I settled into my seat next to Ryan, motioning to Eric to stand with his Dad.  I know how much it means to these guys to get to worship together.  Ryan talked a bit, the usual, mostly robotic, "You will go to hotel/play iPad/etc." I did my usual lean over and whisper, "Stop talking or no *insert reinforcer here*."  This time it was a ride on the elevator. 

Then there was magic.  

He began to whisper. 

He matched my whisper for the first time.  At eight years old, he figured out that this was a time to be quiet.  That maybe he should lower his voice.  The idea that he would hear my voice, note the rest of the room and the setting, and change what he was doing to match it is unheard of so far.  

Most days we operate somewhere between survival, learning to enjoy everything just the way it is, and naturally enjoying what we have to live with and around.  Long days, weeks, months can go by without a breakthrough like this, and there are times we deal with regression and lost skills.  

But then there are days like this, when we are blessed with something that we had grown so accustomed to dealing with that we'd all but forgotten it could be any other way.  

There is no formula to receiving a blessing like this, and there is no guarantee that tomorrow or today will hold another one of these amazing breakthroughs.  If I believed there was a way to make things like this happen at will, then my life would look a lot different.  

I can tell you that I never thought I'd be praying that my child would understand how to whisper.  I can most certainly guarantee that I never thought I'd have given up on the objective of getting my child to whisper in the appropriate setting.  

But I can also tell you that I never thought I'd have such great joy at something so seemingly simple and common.  

Thanks be to God for the deeper hope that results in such deeper joy!

If you'd like to read more about our church experiences, click here, then here,  here, and here.  You never know... you might change a life. 

Wednesday, June 12, 2013

Mud Puddle Experience

With the littles at home with Mom and Ryan happy at day camp, I threw my pink backpack over my shoulder and made my way to the student union building in search of a quiet hole.

I found the least populated place I could, plugged in my trusty MacBook, donned my headphones, and sank into my coffee and a project.  I've needed to hammer it out for a while, but you can guess how much thinking I can accomplish when all the kids are home all the time.

Sometimes the words come easily.  Sometimes it's just the framing of what I want to say that's hard, other times it's the mixing bowl of heart and what I know to be true that must be reconciled.  Other times, it's just hard to say it again.  To explain the pain on the page again, woven and balanced with the amazingness that is our life.

To remember that there are still some who don't know, some who don't care, and that there's little I can do but what's in front of me.  There is always more that I could do.  There is always something else I could be doing to help, to change, to make the world a better place... and that's just in my house.

So what IS in front of me?  I've always said... well, in recent years heard and said... that all you can do is what's in front of you.  Until now, I thought that was a pretty sound policy.

What's different about NOW, you ask?

There are, as Dad used to say, forty-eleven things I can be doing at once.  All of them could be ranked as the most important at the same time all the time.  I've done the talk with the husband where you lay out all you do on paper so he can see it, and I've cut something huge that I did enjoy but no longer could be given priority.  Amazingly, something else filled its place immediately.

I've talked it, prayed it, thought it, re-organized it, calendarized it, and sought to iron it out over and over again.  I've cut things, and I've certainly agonized over each decision and each moment spent doing this, that, and the other.  I've done all these things seemingly forever, and I'm down to two things.

I won't measure up, and nothing on the list can be retired.

I'd better get used to it.

Before you scroll to comments and swat my hand for being negative, hang on.

Too much blind optimism, in the life we're leading, can be dangerous.  There was a time when I could just jump headlong into something and bulldoze it through, being stubborn the whole way about not letting go. If I fell down, I just hurt myself.  As a parent, if I push too hard, there are at least four people I could be hurting.  We have to keep one foot in optimism and one foot securely grounded in reality, both bridged by hope found in God's sovereignty.

Sometimes, however, the realities swirl around us in a blinding storm of nagging inability and frustration.

There are always therapies we're not getting.

There are always techniques, therapies, diets, books, and the like that we could be studying.

There are always more cute little projects to be doing with the kids.

There are always more good things to be doing.

There are always people on blogs and in real life doing those things, looking like they're the super-perfect parents and advocating how wonderful they are and how crazy you are not to do them.

There are always those who will look at what we do, how we live, and hand down a quick judgement on how we should be spending our time.

There's always this one part of me that wants to defend who we are, the decisions we make, and why.


That last thing.  You know, the one about defending who we are, the decisions we make, and why?  There's the key.

If we know it's never all going to be DONE, if we know that something else is always coming down the pike, if there's never going to be an end to the hamster wheel of therapy, if things are going to pretty much stay this busy, what is the one thing that can change?  Well, I can't think of just ONE, but I can narrow it to two.  Okay, maybe three.

The way we view what we do.  

The amount of power we give others' opinions.

The amount of comparing we do with how others do things.

Once I was through had written all I could stand and the SUB began getting busy, I packed up and headed outside.  There was still a bit of time, so I published yesterday's post and decided I'd refill my coffee cup with water.  On the way to the fountain, I ran into the sweet lady who started the BARC and was working the camp.  Immediately recognizing me, she said, "Oh hi!  How are you?  He's outside playing in the water!"

As I do a lot when picking the kids up from an activity, I did my best to sneak around the corner and catch a peek of what he was doing.  He was playing in the water, all right.  I was too slow to get a shot of the first thing I saw, but this followed as I approached.

That's the dear lady who oversees all the organizing at the BARC.  She had told Ryan to go sit on the steps... but she meant the ones on the building, of course.  

But those steps had other people on them.  Bleh.  And these are steps, thank you.  I could tell immediately what he was thinking.

Soon as I was noticed by Ryan, she figured out that I was just fine with his being soaked, and he went straight back to what I first saw him doing.  

Yes, that is my son, face down in a giant muddy puddle, completely enthralled in the feel of the ground, the ripples in the water, and completely oblivious to the fact that he was the ONLY kid still wet and playing. 

As I laughed, smiled, listened, and grabbed these shots, I heard about his great day at camp, and how he just wanted to sit in the middle of the pool at the end of the slip and slide they were using.  I also heard of how he took turns... yes, I said TOOK TURNS... with a little help, of course. 

Again, folks... he's teaching me.  He doesn't care what others are seeing, saying, or what people might think.  He didn't defend his right to splash in the puddle in embarrassment that I saw him.  He splashed, played, and enjoyed, following (to his understanding, of course) the instructions given.  He doesn't agonize about pleasing anyone, to my knowledge.  

He knows that he is loved.  That he is okay.  

I know that I am loved by the One who created me.  I know that the only way I am okay is through that love, through the love who sent Christ to make me okay.   And yet I look around as we walk through the parking lot, Ryan refusing to hold my hand.  My heart pounds when he yells out in an inappropriate place.  I notice the people staring in disapproval while I lift him into the cart to make a trip to the store.  

While I do not envy Ryan's inability at this point to naturally understand social interaction and to self-regulate (not hit and scream when things become too much), I do wish I could just live, doing my best.  To respond when appropriate with truth rather than shrink back in fear.  To be able to mess up, apologize, and repent and truly let go of the disappointment I have in myself.  To accept help and even instruction when I need it without resentment or that same nagging disappointment. 

I don't see all that happening overnight, but I'm thankful to see it. 

Thanks be to God for Ryan, for puddles, and for a lesson on forgiveness and grace and mercy... again and again and again.  

Monday, June 10, 2013

Day camp time again

He asks again and again.  Not every time we go to therapy at the BARC, but from time to time.

You will go to day camp!

I assure him that he will.  First or second week of June, buddy.  No problem.  

And of course it's not a problem.  Thankfully we're to a point where affording the sixty-ish dollars and gas money to get there isn't a major deal anymore, so all I have to do is get the forms to the right people at the right time and we're golden.  

So this morning we left around eight, armed with sunblock and clothes he could get messy.  Thankfully, they were armed as well... with bubbles, sidewalk chalk, and grad students who were excited to spend the day playing with and, of course, chasing and engaging these kids.  

It's the same scene every year.  The parents who are vets at this and either have figured out that their kids will be just great here and look relaxed, the parents who are still nervous but have worked on their poker face, and the dear ones with that deer-in-the-headlights look.  You just can't help but think that some of them are in the process of receiving a diagnosis and are learning... and falling from... the ropes, just like you do.

Our guy buzzed around and half-bulldozed his way to one of his newest and fiercest loves, drawing with chalk.  Half our summer budget will likely go to chalk and dry-erase markers... well mostly markers, seeing as he won't put the caps back on without a great deal of goading.

Here he is, gettin' his elevator drawing on... not sure how a car wash is an elevator, but he insisted.  Wishing I could see the picture in his head, I agreed.

When I left, one of his counselors had realized the fun way that he's not into large groups of people.  She was handing it with grace, as I've known these students to do, so I walked on to the van.  

I had a surprise to deliver.  

These weeks of day camp are for Ryan, but they're also for Richie and Maelynn.  

These kids spend so much of their time going to and from and sitting through therapy sessions both away and at home, and during this week, I like to try to let them taste a little of the things we don't do because it's too hard for brother.  

A rare trip to the Mayborn Museum, something brother will get to do with the camp later in the week, was on the slate for the morning.  After a couple of little hitches, we were on our way! 

We went from room to room, checking out every last thing we could see or touch.  We walked on the mammoth site, went through the cave exhibit, the forests, and ironically enough, the traveling fear exhibit.  They got to do something tremendous... they were able to just be kids, romping through a museum designed to take them placed they'd never been.  

As we walked and explored, and even tonight, Richie has begged to go back. He wants to go there "a lot a lot a lot more times, maybe even tomorrow!"  

And I was stuck someplace between jumping for joy that Richie loved it, and wanting to cry because it's so hard for his brother.  

Sometimes I just wish we could jump in the car and do stuff like this.  I had a ball watching Maelynn and Richie have a ball, but there was something missing.  

My heart aches to be able to do things like this with Ryan. With our whole family.  

The last two times he's been there, it didn't end well.  Lots of screaming.  All he would do is stare at the model train exhibit, which just so happens to be the first thing in the children's end.  Trains and an elevator... what more could he want?  It's fun for the first little while or so.  Then a little kid wants to look, too.  Then he starts getting possessive.  

And that's when, with much screaming and hitting of chest, ears, legs, and whatever else he can reach, it ends.  

There comes a point when knowing that your child will beat himself silly when he has to stop doing something makes it not worth doing.  The screaming isn't fun, but watching him rare back and slap his chest with all his eighty pound might, over and over and over, fueled by a torrent of frustration, confusion, and anger...that's beyond "not fun."  

So I'll take Richie and Maelynn to do other random stuff that we just usually don't do, and Ryan will continue with day camp this week.  And we'll do all this enjoying each other, but missing him.  

We'll all be waiting for Thursday with anticipation, hoping that  maybe it will go well this time. Maybe I'll be able to go back and get that membership that allows us all to go whenever we want.  But if we can't... if he just isn't able to handle that yet... we tried. And we're grateful for a chance for brother to do something that is a treat for him while the littles get to do something that is a treat for them. But where one of us is missing from a family activity, we will always feel the space they leave. We always hurt over the gap.

We will love him for who he is. 

We will love them for who they are. 

And we will trust The Lord to bridge the gap, rejoicing in everything in our own way.

Thanks be to God, who is love, for bridging the gaps where it hurts the most, and for the obvious and not so obvious reasons to rejoice.

Celebrating Trust

There wasn't much for me to do other than the last minute packing for the kids.  Ryan amazingly packed his special new Thomas and tracks... in a box, of course.  Richie and Maelynn, upon being told to fill that one special backpack with whatever they couldn't live without, ran about finding treasures and seeking approval to bring them.

I kept nervously going back to our bedroom, suggesting this and that for Eric to pack for me, and now and again he'd emerge with a shirt and a sweater to see if they matched.  There was a grand surprise waiting, and I had no idea what awaited.

Aligning with my control-freak tendency, I fought the urge to work too many questions about the weekend into our conversation.  I love a surprise, but detest a surprise when I know it's coming. Strange, right?  No matter... that's a good lesson for me to learn over and over, because that's likely what it will take to overcome that particular character flaw if I ever overcome it.

Through that poking, I did find out that we needed to pack separate bags for us and for the kids.

The last time we did that was for Eric's back surgery two years ago last January.  That was not fun, but very needed.  It had been quite a surprise for the both of us, and sudden.  But it happened all the same, and we spent our first two nights away from our kids... my first nights away from our nearly twelve month old daughter.  Oh how I missed her!  But I digress.

We're not the type to drop the kids here and there.  We like being with them, and that's good because there's not respite care to be found around here.  Not that we wouldn't take a day off now and again more often if it were afforded, but that's just not how we roll.

Once we arrived at our other home, we loaded this and that, and thanked his parents for taking the kids for the night.  I reiterated that I knew nothing but that we were to be gone for the night.

With a few sweet, loving "get outta here, ya crazy kids" from Mom and Dad, we were on our way to slay the traffic dragon.  Back into Dallas at 5:00 we went.  It seemed that all the cars and trucks and vans and taxis in our way might have been placed there just to continue teaching me that lesson about slowing down... about patience... about enjoying the ride.

He took an exit I once knew well, then another.  The white tops of the hotel where we dined the night he gave me the ring peeked from the skyline... then we took another turn.  Toward the arena where the Stars play.  Could we be reliving that part of our evening so long ago?  No... they missed the playoffs (again, but I'll leave that).  Another turn into a driveway that wasn't there ten years ago... and into an alternate universe.

Without first checking where the elevators were... without making sure we could see the pool... without so much as a thought to whether or not the room would lock in a way that could keep wandering sweet ones in, we stepped into a blissful twenty hours or so.

He had it all planned all along, all I needed to do was follow and trust him.

How novel.

It was simply wonderful.  And in its wonder, I realized that pictures, words, souvenirs can only go so far in remembering a moment.  At times the pursuit of shellacking the memory in preservation takes the life from it completely.

We took a few pictures, simply because we couldn't believe we were where we were, but the best memories remain locked in our hearts.  There are some we gladly share with laughter and amazement, like the fly in his sake at the restaurant right at the last sip and the nervous laughter that surrounded when the lady at the front offered the DJ here and there when all we wanted was to stare at each other.

To remember those first days.  The reasons it all started, the way it all started.

Three kids, four jobs, a cat, four dogs, five moves, several losses, changes, and ten years later, here we are.  Close to where we started, but only geographically for the night.

Thanks be to God for his providence in bringing us together, and of course for keeping us these ten years.

It's a weekend late for good reason, but I love you, Eric... and I can't wait for tomorrow.  And the next day.  And the next.  

Wednesday, June 5, 2013

The Menacing Request

What do you think?  He's begged for this forever now. 

Not sure.  It's risky, but he is older, and we know better now too.  

So should I get it?

Sure.  We'll just have to be careful.  

~Eric and I, on the item Ryan wanted to buy with birthday money.

Stuff gets complicated around here.

Not that it doesn't at your house.  I understand that we all have our own set of problems, challenges, and the like as well as different blessings.  But sometimes our personal differences just... sting.

The above conversation sounds like we're buying something dangerous, right?  A knife, a BB gun, a .22... all big birthday gifts where I grew up, by the way.  Could it be a go kart?  A four wheeler?  Hmm.  What could the controversial item possibly be?

Ready?  I'm gonna tell you!  Do you think you can take the suspense?!

And the mystery item is...

Menacing, isn't he?

Can you believe I let something that scary into my house?  

Let me back up a bit. 

About three years ago... maybe four... Ryan got a little train similar to this one.  He already had a few and several pieces of track.  But this time it was different.  

On Christmas Eve, in my hometown, Ryan opened a black Thomas and Friends character train.  It was from the newest movie at the time, and was the main character.  He was a new friend of Thomas.  Long, black, and rather square, he came with his own coal tinder.  His name was Hiro.  

That night, as I put Ryan to bed, he didn't want to give up his new plastic friend for anything.  Of the Trackmaster line of Thomas stuff, he ran on his own on a couple of double A batteries.  I stood at the doorway, watching Ryan hugged up to his new train, all teary-eyed.  It was one of the few regular mommy moments I'd had in recent years, and what could be wrong with letting the kid sleep with his new toy?  That's what you do with these things.  What could possibly go wrong? 

Over the next few months, we found out. 

Ryan's love for Hiro grew until he was carrying him everywhere.  I mean EVERYWHERE.  He ate, slept, played, and even went to the bathroom with Hiro.  Not just "Here mom, hold this."  Hiro was IN HIS HAND.  He wouldn't let go of that train for anything.  The only time he would let go was to go to school, and that wasn't pretty.  

Then the day came when Ryan wouldn't even put Hiro on the tracks anymore.  And if he did happen to let go long enough for his dear friend to have a run, if a toddling 18 month old Richie came in the room, Ryan started to scream.  He'd snatch Hiro off the the tracks and act like something bit him.  

I had no idea what to do, or if I was overreacting.  I mean, all kids love things, right?  All kids develop attachments.  What's the big deal? 

Thankfully, we had a behaviorist who came to the house every now and again through the school.  She helped me understand that Ryan wasn't just crazy about Hiro.  He was addicted.  

Sounds crazy, right?  Maybe a little over-reactive, helicopter-mom?  If you'd been there, you'd get it.  If you've struggled with this, you get it.  

Through a little coaching from our awesome behaviorist,* time, and a lot of loud, violent melting down,  we finally weaned him away from Hiro.  With his stickers rubbed completely off, his last destination was a landfill.  

After all that, we swore off all Trackmaster tracks and trains.  Never again.  No way.  

Then, a couple years ago, started to ask for Trackmaster for his birthday.  

"You want Trackmaster for your birthday!"

"You will get Trackmaster for your birthday, Mommy!"  

He'd stim and ask in his own way, interchanging birthday for Christmas.  He asked and asked and asked.  We tried to explain.  Then, when he was opening gifts on his birthday this year, it happened.  

As he walked toward his pile of gifts and cake, he said, "You will get Trackmaster for your birthday, Mommy!"  

And, knowing there was no Trackmaster in the pile, my heart broke. 

We talked about it.  He had money to spend from my great-aunt and his Nana, so should we try?  Coupled with a few autism-parent years under our belt, his birthday money went into the store he himself refused to go into, and with a last worried glance to Eric, I left the van with Richie to shop for birthday.  

With help from his biggest fan, I chose that little Thomas and a pack of flex-track.  The feeling was a lot like a new job.  I was excited and nervous.  The look on his face... the sheer delight... would be great, but his owning this item costs a lot of work on our part.  Here he is on his first go-rounds with his precious gift.

The bottom shot holds the intensity and fervor of his love for this new toy.  He's already worn the battery, and I'll soon replace it.  But this time, he puts his train away at night... and he has to do other things during the day without it.  Right now, the train sits on a track in the floor while he plays iPad in the kitchen.  

This is big, folks.  

We've had a few bumps in the road so far, but thankfully it's nothing deal-breaking.  

Thanks be to God for the peace and courage to try again.  For without that, this post and so many more would simply not be possible.  This stuff is hard, but we have been given so very much.  

*We only had her around for a few months.  They were great, but short.  Looking for a major?  There's work a plenty in behavioral therapy.

Monday, June 3, 2013

A Year Early Again?

In our last ARD meeting, which is Texas Education speak for what most of you call an IEP meeting, we decided through much discussion and hashing out details that the best interest of Ryan would be to go into the intermediate school next year to be in Life Skills.  The saga of heading into that meeting is here.  The meeting results itself are here, if you want to catch up.  

So through a lot of mental and emotional gymnastics, Ryan will not go to second grade per se.  He will not go to third grade.  He will go to the intermediate school a year early.  Life Skills was another one of those things that I almost closed-minded Ryan into a corner over.  It wasn't an easy decision, but the truth is that it's best for him.  Sometimes you have to know when pushing begins to be shoving, and pay attention to how quickly the edge is approaching.  

The idea is always to better him.  To encourage, inspire, and train him to be all he was meant to be.  But when all that we hope for him begins to crush him, it's time to take our heads out of the box and shake it up a bit.  

Next year, Ryan will not be in a second grade classroom.  He will, instead, walk through a year of school days tailor-made for him.  He will have as much inclusion time in a typical classroom as he can truly handle.  He will have PE and music, too.  He will also have the speech and OT he needs.  Academics will be handled by his resource teacher from this year and his Life Skills teacher, both of whom already know Ryan and will do the inspiring, encouraging, and training we expect.  In addition, he will get to do some cool stuff like learning to deliver mail, cooking, that kind of thing. 

All this was so exciting until the reality hit... he grew up in that elementary school. 

He started there right after he turned three with summer school.  He did three years of PPCD (Preschool Program for Children with Disabilites), then a year of kindergarten without an aid, then a year of first grade.  

He was supposed to have one more year before he was in the intermediate school!  

Okay, I was supposed to have one more year to adjust to the idea of having a child in intermediate school.  But if there's anything God has used this little guy to teach me, it's that I don't always know what's coming.  I have to be ready to accept what he needs, what is best for him, no matter how different it is.  Even if it flies in the face of everything I dreamed for him.  

I learned the hard way not to try to go on school trips and outings with him.  For some reason, my face at school for Ryan is like hearing your alarm clock in the middle of the day.  It's just not right.  It throws him off.  So I don't bug him unless I can take him home.  Through at least two Polar Express train rides and no less than three trips to the zoo in Waco and a couple other field trips, I dropped him off with his teacher and went home.  The only information that came about his day was what the teacher or aid offered.  I don't like that, but it's how he enjoys the trips, so I stay home.  

But every once in a while, I can grab a little of that room-mom I wanted to be for him.  

His birthday, May 30, was the day before the last day of school.  His last day of school in that building for good.  So in asking around for everyone's opinion at school, we decided that he should leave like a rock star.  His birthday would be Ryan's last day of school. 

Right before the end of his last day in the elementary school, his last day of first grade, Daddy and I showed up with his beloved brown cupcakes.  

Everyone who dealt with him was sad to see him go.  His teacher is a family friend, so she was proud of him and all, so it wasn't quite so dramatic.  His aid, on the other hand, was pretty teary... and we were too!  She was fabulous with him.  I cannot tell you how great she was with him.  We asked if she'd like to come play with him some this summer, and I bet she will.  

After we dropped off end of the year teacher gifts and hugged and said good-byes, we walked down the same hall I trod when I walked him into PPCD every day when he was three.  We went through the cafeteria and past the place where I met his class the second and third years of PPCD.  

I guess it depends on your perspective how long time seems to take.  It seems to me that I just had a little ball of baby Ryan on my shoulder, yet it was eight years ago.  It seems that I just hobbled into that building behind the stroller that held a not-yet-a-week-old Richie to take Ryan to his first day of summer school.  

And although it was mentioned in our last ARD meeting, graduation (or his 21 year old exit from the school system, whichever Ryan is afforded) seems eons away... but the reality is that the days, as we struggle to balance between enjoying them and working through them, drag but the years fly.  Through all kinds of pain and joyful exuberance, I keep learning over and over that time marches no matter how we beg.  My first reaction is to say that it marches cruelly, stomping over whatever emotion may be attached to a given moment, but I think that's a bit harsh.  To swing to the other side and insist that time skips gaily through the calendar is equally as foolish.  

Time doesn't simply go by, march, or skip.  Each moment is hand-sculpted to fit a perfect design.  I may not like it.  I may wish it would just hold up and minute and give me a breath.  But the only true way to get a breath when things are out of control is to realize we never had it in the first place.  

I'm so proud of our little Ryan, who is, as of last Thursday, a big 8 year old boy.  

Thanks be to God for every minute of our lives, including the ones we've yet to live.  

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