Thursday, August 30, 2012

Mommy Will Come Back

Last year during the first week of school, I had to practically push Ryan out of the van.  He'd slink down into the floorboard and hold onto the dash.

"Don't you want to go to school, Ryan?" 

"No school!"

And we were grateful for this improvement.  He actually TOLD me "no school".  Major improvement in communication!  We were so excited.  He also declared, after the first day last year, "You love school!"  Which, in Ryan-ese, means that he totally loves school.  And he did, most of the year.  It was pretty smooth, and I only had to pick him up because he was inconsolable once.  The whole year.  Through the whole year and into this year, the car rider helper opened the door of the van and coaxed him out, although things became easier as the days wore on.

You can state it in whatever words you choose, but no matter the verbage he is a severely autistic seven year old, mainstreamed in a typical first grade classroom.  There is a classroom aid, but there is not an aid glued to his side.  We don't want that.  We want him to learn to accept change, to do his own thing, and only get help when he really needs it.  We truly feel this is best.  While we want someone on him like white on rice if they take him anywhere out of the school for safety reasons, once he has his routine down at school, there's not as much need on a regular school day.  

One of those times he needs help is pick-up.  He isn't capable yet of understanding the danger of cars and crowds, and doesn't understand the need to stay out of the way of oncoming traffic.  So the classroom aid brings him out to the van in the front of the school where things are less chaotic.

I knew, picking him up, that he'd had less-than-stellar days earlier in the week.  When I picked him up for ABA at Baylor on Monday, he was on the floor in a meltdown.  Immediately, you feel bad for him, his teacher, the aid, and the big-eyed kids in the classroom who are looking quite shocked and concerned for their peer.  I know his teacher, and I know we can trust her with him.  But I know this behavior isn't fun for any of the parties involved.

When the aid brought him out the front of the school yesterday, I opened my arms and he ran, grinning and humming, falling into a hug with mommy.  His aid, always happy and proud of him, said "Give her your note, Ryan" and with a little help, this is what met my hands.

NO meltdowns.  He did his work.  Apparently mostly stayed in his seat.  

While I know that there's no guarantee that every day will be like this, it is an encouragement.  I know he was proud of himself.  I know that there were several people praying for not only Ryan, but for his teacher and the aid, and the other students in the class.  But there's one other thing we can't forget.  It's the underlying, yet stage-setting thing that makes all this possible. 

He has a chance. 

He has the opportunity to walk in a regular classroom full of typically-abled kids every day.  He has a teacher who believes Jeremiah 29:11 for him and all the other kids.  He has a chance.  

There was a time, and there are still places, where kids like Ryan don't get a chance.  How many, you ask?  I won't post statistics, but there are too many.  One is too many.  And it doesn't take long to surf through some mommy blogs and autism parenting chat sites to find the horror stories. 

It won't be easy.  So many of his days aren't. So many things that I have no idea of challenge him every day, every minute, in ways I cannot understand.  But he has a chance. 

On the way to school this morning, we had our morning peppy music on, and were car-dancing along, getting tickles and giggles squeezed in at the stoplight.  While we waited in the drop-off line, my heart overflowed with gratitude.  Watching all these kids go into school, from a variety of vehicles and a wide range of backgrounds and abilities... and then Ryan surprised me again. 

As we pulled up and came to a stop, Ryan took off his seat belt, opened the door to the van, and after saying "Mommy will come back" he hopped out of the van.  The helper who makes sure the kids get in the building met him as quick as she could, and made sure I heard what he said.  

He still stimmed on the wheels of the van as I drove away, but his helper was there making sure he was safe.  

As I drove through the rest of the traffic tree and made my way to the road home, gratitude overflowed and ran down my cheeks.  He is growing.  He is learning more every day about navigating this world while still being who he is.  

Given the chance, you never know what might happen.  

And, I must add, Ryan has the same chance at church.  The gospel applies.  It doesn't matter that there aren't inclusion laws for churches and Sunday schools.  If we truly believe in the gospel, we must realize that it must be carried to everyone, even those who act and behave differently than we think they should. 

These kids are growing up.  They are not going away.  All of the special needs children who are living among us today will be teenagers, then they will be adults.  They are precious souls just like you and I, and they must be given a chance.  No, it won't be easy.  But you know what?  You could make the difference just by keeping a smile on your face and patting the back of a mother dealing with a melting down child.  Or you might even go to the church office and find out who to talk to about being an on-call aid for a child in Sunday school or even a youth meeting.  Don't wait for the deacons, elders, or pastor to make an announcement, pleading for help.  You might be the person who starts a major change in thinking.  You might be the person who uncovers this sleeping giant.  You might be the catalyst for major improvements in the social, emotional, and spiritual lives of so many of us.

Those of us who realize must rise.  

See what can happen when these kids get a chance?

Thanks be to God for those who have risen, for they have changed my life! 

Tuesday, August 28, 2012

One Impressive Dinosaur

Ryan did have a decent day at school yesterday.  Not stellar, but up and down.  But hey, a giant routine change like going to school is more rough than I can say, so we will definitely take up and down.  He had another decent day today, with only two meltdowns.  The good news is that, so far, when he is given work he will sit and do it.  Now when the work is done is another story, but let's just be happy he'll do his work!

As we were getting ready for bed last night, Richie picked up one of the things Ryan had made during his school day.  I had all of Ryan's schoolwork for he day laying out for Eric to see when he returned from Monday night marching rehearsal.  When the boys sat down to have a drink of water before we brushed our teeth (just one of the many sacred routines in our house), this little baby caught Richie's eye, and he was mightily impressed.

He absolutely gushed over what a wonderful dinosaur it was!  Upon further inspection, I believe it was meant to be a monster, but y'know.

"Oh Ryan, this dinosaur is awesome!  Look, Mommy!  Look at the dinosaur Ryan made!  You did such a great job, Ryan!  I am so proud of you!"  

Yes, these are the words of a four year old to his seven year old brother.  He was impressed in a big way, and overflowingly proud of his brother!  Pure praise from a heart of love.  Ryan just stared forward, drinking his nightly cup of water, unswayed by the river of encouragement coming from his little brother.  

Then things got a little too real for Ryan. 

Gushing with, "Oh, Ryan, I love you!  You're the bestest brother in the whole world!" Richie leaned in to hug Ryan full-on, arms wide open.  Even from the side, this was not acceptable to the big brother.  

He started to yell and beat his chest.  He pushed away his biggest fan in an almost meltdown.  

Crushed, Richie sat back up in his chair.  As fast as my mommy arms could travel, they were around my tiny encourager.  I hugged him, told him how proud I was of him, and how much brother loves him even though he doesn't seem like it.  And he blew me even farther away.  

"I smiled when Ryan got-ed home today.  I love Ryan and I missed him today while he was at school."  

Then, when Ryan was a touch more calm, I asked if he could please give Richie a hug.  He smiled and leaned into his brother's arms.  

This is one of those moments when I know that God doesn't make mistakes.  All my kids were created to be who they are, and I wouldn't trade any of them.  A brother's love for his hero, and a big brother pushing through something uncomfortable to be able to show his biggest fan that he loves him right back.  

Thanks be to God for these sweet, special ones.  

Monday, August 27, 2012

What does it look like?

I started this post this morning after dropping Ryan at school, but decided it was way more fun to hang out with my dear Mom S instead of finishing it.  So I decided to wait and finish it later.  It's later.  A post on how the day actually went, as well as something particularly awesome that Richie said and kinda did, will catch up with us tomorrow.  

The first day of first grade, as far as I know, is underway successfully.  It went as well as it could have gone on our end.  We got daddy off to work at seven, just like he wanted.  Ryan woke little more sleepy-eyed than usual, but ate his breakfast without an argument just the same.  We did things just like we did last year, save the tooth brushing time.  We brushed teeth four minutes earlier than last year.  7:45 rather than 7:49.

Out of the house without incident, we fought the only rush hour in Groesbeck.  The school parking lot was overflowing with vehicles of all shapes and sizes, parents and kids dressed in their first-day finery walking into school, some stopping outside for a quick shot with the school sign.

The traffic was ridiculous.  Bumper to bumper doesn't quite express the craziness.  I didn't see any rage, however, and I am impressed with our little town for that.  A bit annoyed, I made my way through the insanity to the drop off circle part of the traffic tree.  We were literally the only car in the drop off line.  At least one of the ladies helping kids get out of cars was the same as last year.  And that's when it hit me.

I wasn't annoyed at the traffic.  I wasn't annoyed at having to wait.  I had nowhere else to go but home for once, and Richie and Maelynn were at home with Grammy, who graciously came all the way down here to make sure Richie didn't have to get out and run around in his post-op-ness.  Especially when we have to take Ryan to therapy today.  Too much running around for a kid who's not supposed to be back at school yet, according to the hospital instructions. But if it wasn't traffic, it wasn't the wait, it wasn't fussy kids in the van... what was it?


I want to be the mom parking wherever so I can walk my little buddy into school.  I want to be the mom standing in front of the school taking pictures of my boy in his new clothes and pristine backpack.   I want to be making this special, too.  But the best way to do things for everyone else isn't the best way for us.

Ryan is somewhat like a train.  He needs to be put squarely on the rails.  If I start him somewhere else, then tell him to change the next day, it's not going to end well. He needs the comfort of the track.  And greater is my desire to see him successful than my desire to make my parenting dream come true... or at least I'm finally able to overcome and just do it.  Or even realize that it has to be done that way.

I don't understand why, but we're all different.  What's great parenting for you might throw my kid completely off and upset him.  If I tried to put Ryan through taking picture out in front of the school, or even in the yard, he'd be screaming before I managed to get him into the van.  If I walk him into class, I'd better be ready to do that every day.  But that's not the way I was as a kid.  I'd have wanted my mom to walk me into the room.  I'd have been quite upset if she didn't.

But Ryan?  Although he can't express it, he's going to feel a lot more loved if I operate in a way I know he'll be happiest, rather than cater to my own desires.  Because for us, it's a little more than just embarrassing him a touch.  It could tank the whole day and slow the process of getting acclimated to a new school year.

Honestly, if I were in your shoes, taking pictures with your sweet ones on their shiny-new first day, I'd look at me... the mom kicking her kid out in the regular ol' drop off line just like it was any other day... and feel sorry.  But the truth is that I'd love to be able to do what you're doing.  This is just what love looks like for my first grader.

Thanks be to God for diversity, for we learn so much in the quest for understanding. 

Friday, August 24, 2012

Richie's Hospital Adventure

After a particularly fitful night of attempted rest in the hotel, we arrived at our post in day stay at the hospital for Richie's procedures. All were completely routine, but I was nervous the whole night.  Afraid I wouldn't wake up in time and we'd miss our appointment, nervous about everything I could think of.  We were surprised upon check in to find that the day surgery center had nice, big rooms that held our little entourage nicely.  It was a warm welcome, between the nurse and the coloring book, crayons, and little bear with a t-shirt that said "hugs make me feel better".  They even had a huge rocking chair that Richie quickly began enjoying!

Once Richie was properly settled, questions answered, doctors visited, the family came in.  Well, the family and the iPods.  

No worries, that drink was empty.  I have no idea why Maelynn decided to sit it by her brother!  

Richie was prepared with prayer, awkward attempts at explanations from his parents, his Snuffles the puppy, and of course, his tiger feet slippers and Snoopy pajama pants.  

These before times were so strange.  I wasn't sure what to tell him, except that there were parts that were making him sick too often, and the doctor would remove them.  But I sure didn't want to traumatize the poor kid.  So we did our best to help him understand, then showed up and supported him the best we could.  

I've been through surgery on a four month old baby twice in as many months.  I've been through several exams under anesthesia.  But as I walked down the hall beside the bed with my little boy so innocently watching Bob the Builder on my iPod, my heart broke all over again.  

Having a child is like having your heart walk around outside your body.  

Sending them down the hall with someone in scrubs who plans to work on his little body in ways that I don't want to think about, even if the nurse is nice and caring, levels me every time. I cried, and walked back with my iPod still playing ol' Bob, too numb to turn it off.  And this is just a routine surgery. 

We took everyone with us.  For one thing, we were staying in a hotel overnight.  For another, Maelynn and Richie are glued to one another.  It just didn't seem fair to separate them.  She even held his Snuffles while he was in surgery. 

I felt like I was sending him into something so hard, so personal, so potentially painful, without the benefit of truly understanding what he was getting into. 

In recovery, I told my mother that I felt like he was wondering why I let them do this to him.  How do we know what he understood?  But in the end, he has a choice.  Trust us, believe that we have his best interest at heart, or distrust us and be angry.  

He woke a little confused as to why his hand was wrapped in a crepe-paper-like bandage, and why he couldn't seem to wake.  But every time he opened his eyes, he saw his mother.  And every time, until it was time to wake for good, he closed his eyes and rested more.  He opened his eyes, made a statement or asked a question, accepted the answer even when he was uncomfortable, and rested.  

As long as his caregivers know what is going on, he's fine.  He rests.  He looks to his father and mother for answers when he is confused and scared, and then rests... not in the answer, but in the integrity of its source. 
Both boys today, resting in Mama's arms in their own way. 

May it be so for all of us.  

Thanks be to God.

Wednesday, August 22, 2012

Who Says?

I have an unbelievable amount of things to do today.  I really do.  Packing remains to be done.  The only good thing I've accomplished is dressing the kids and throwing jeans and a t-shirt on myself after brushing my teeth.  At least I vacuumed last night, and the rooms just have toys on the floor.  Mom and one of my great aunts, we'll call her GM, are coming today for Richie's tubes and adenoid/tonsil removal tomorrow, and I'd rather my house not look like hurricane Senzig kids hit it, but I digress.  I must interrupt the insanity of my day to tell you about this.  MUST.  

As I sat down between spurts of work to have a swallow of coffee and read some news, this happened.
Looks like he's making a very important call on those drumsticks, no?  

He plopped down, started PRETENDING to type, and said several times, "Richie's laptop computer." 

This is a long, long time removed from the days when I sat in a daze filling out the tests upon tests of hundreds upon hundreds of questions such as "Can your child kick a ball?" and "Can your child take steps in stride?"  Not only that, but they want to know at what age... to the month... he did such things.  Over and over, I searched my memory for pictures in my head of balancing, throwing, talking, walking, steps, everything they asked for.  No pressure, just my child's label or lack of a label at stake.  Just his life.  No pressure. This could only be the difference in help or no help.  It's only after all this that they think to tell you not to worry, because there are things in place to prevent things like throwing the test in one way or another, or any accidental throwing of the test by things like an addled mommy brain. 

One of the things that we were told... and we understood to be true... was a lack of ability or care to pretend.  Pretending is a very abstract concept.  Ryan's brand of autism and abstract things do not go together.  Age appropriate play is out the window.  I don't know what seven year old boys are into these days, but I'm pretty sure it's not Blue's Clues, Elmo, and Thomas.  

Honestly, if there's one thing about autism that I can embrace, it's this part.  

But he's pretending every now and again.  And every time it happens, it's a kiss from Jesus.  "Inability to pretend" seems to be less and less apparent, eh?

Back to your regularly scheduled packing, planning, and cleaning frenzy.

And, lest I forget, thanks be to God, the giver of all good things!

Tuesday, August 21, 2012

Mega Fixation

"All shall be done.  But it may be harder than you think." ~C.S. Lewis, The Lion, the Witch, and the Wardrobe


Here I am again.

We have been doing so much better with sharing.  But for some reason, all he wants to play with this morning is whatever is currently in his brother's hand.  He's fixated on these blocks... these blocks that really are his brother's.

Richie was here first, started playing first, and all the other reasons that make walking up and insisting that he give it all up for his brother not okay.  That and the simple fact that Ryan will have to leave this house sometime and be around other kids.  

Right now, Richie adores his brother.  He always has.  He asks Ryan to play a lot.  Usually Ryan either hears and doesn't understand the need to respond or how, or maybe he just doesn't want to play with Richie unless it's on his terms.  It's hard to have Richie walk up to me crying because Ryan decided he wanted whatever was in Richie's hand, or decided it was time to play on Ryan's terms, which often involves playing more roughly than Richie's thin, spider-monkey like four year old body can take.  

Then there are the times when Richie walks up to me, gazing with those big blue eyes, asking why brother won't play with him.  

I want to play with Ryan.  Mommy, will you tell Ryan to play with me? I just want to play with him.  

In other words, "Fix it, mommy.  Fix it."  

And I want to.  

I do my best to explain, but I don't know what is helping and what is just the Charlie Brown teacher's voice, just making noise again.  

A clanging cymbal.  

I've tried this morning... all morning... to defend fairness.  To help teach the lessons that they need to learn.  For Richie, this time, he gets to play with his toy.  For ours this morning, Ryan beat his chest, slapped his ears, groaned, yelled, and shouted "Ryan's turn!  Ryan's turn when Richie's done!"  He tried to take the toy several times.  Every time I intervened to set a time to share, the screaming and fussing and hitting started all over.  

He can't do this at school.  Oh dear Lord, help him next week.  

I've done very little in the way of cleaning house or readying for Richie's upcoming trip for surgery and tubes today.  Most of my energy was spent defending.  Teaching.  Training.  Holding a line.  Refusing to back down.  

Sound like a fight yet? 

Sure feels like one.  

After hours of this mess, Ryan comes up and lays his chin on my shoulder and says, 'You can have track master for your birthday, mommy."  Obviously, he's calmed and suddenly over it.  

I explain again as gently as I can that we use a different kind of tracks... for what feels like the hundredth time... and he's mad all over again. 

Folks, I am not going to lie to him to make him happy.  I've become quite creative with "no", but sometimes no is the answer.  And if he doesn't hear it here, he won't be able to take it anywhere else.  

Screaming is not currency in our home.  Misbehavior is not rewarded.  Honestly, if you give him what he wants just because he's screaming, it does no good.  Screaming continues.  It switches to something else.  I won't say I've never tried it.  I did a long, long time ago, and the though that handing him whatever he is screaming for will stop the upset is absurd.  There's something behind all this.  

He knows now.  I told him that school is next week.  I told him who his teacher is, and I think that made him happy!  I really do!  He knows who she is, and seemed happy to hear that he gets to be in her class.  I'm happy because I know she's a fabulous teacher, very organized and seasoned, and runs a tight ship.  But more will be expected of him this year.  That's good!  It really is!  But a challenge is a challenge.  And I'd be lying if I said I wasn't nervous for him.

But he knows a change is coming.  He's enjoyed his summer schedule.  And I have enjoyed him, and sure hate to see him be gone so much during the day.  

I know he'll be fine.  I know the academics are something he will handle, although measuring his knowledge is next to impossible.  It's the swings.  

Yes, the swings.  

Last year, he had to have a swing on the playground.  If he didn't get one, it was meltdown city.  Right after mentioning to him who his teacher was, he said, "You will get to go on big swings!"  

So as I watch him half (yes, just half) melt down over getting the Thomas Mega Block train for three hours,  my first instinct is panic.  

But as we've learned in the past week or so, I'm trying not to do that.  Really trying.  So I take a deep breath, remember the sovereignty of God, and try to work through the current issue.  He who keeps the stars in place and the planets from colliding can surely handle the first grade.

The part that people tend to miss when I say things like that is the fact that it may not be easy.  It likely won't be easy. But whatever happens, we can find rest and assurance in the knowledge that someone is in control, and is sure isn't me.  I prefer not a false hope doctrine that promises an easy road with no bumps, hills, or turns, but a promise that whatever happens, we are held.  The road may be bumpy and twisty, but it is God-filtered.  

We do our best.  We slog through the days when nothing seems to be okay in his sweet little anxiety-riddled head, and try to help bridge the gap between he and the rest of the world.  And we go to bed every night knowing that where our ability ends, grace and the Lord's provision fills.  

Thanks be to God. 

Monday, August 20, 2012

The Big Guy? Really?

This morning, WAY too early, Ryan asked for his drumsticks.  And by way too early, I mean I hadn't yet downed one cup of coffee.  I can handle a lot of drumming.  I can handle a lot of noise.  But I'd like to have a little liquid motivation on board first, y'know?

The first time he asked (pre- 7 AM) I told him after breakfast.  That held him off for a few swallows.  Then he really wanted those sticks!  We'd already had a few mild fusses over other random stimmy things.  And since we're trying to get across the idea that he's not going to get to do what he wants all day next week when school starts, I told him he had to do one thing before he got his sticks. 

"Read this book and you can have your sticks, buddy."

He was not amused.  My request was met with fussing, chest beating, and a little screaming.  

But just a little.  

Then he stopped, sat in the overstuffed chair, and said:

"The big guy reads it." 

Since we know the apps that we've put on the iPad, I know that this comes from the Sandra Boynton book app (highly recommended).  The choices are to read it yourself, or let the big guy read it.  

Now, normally I would not me excited about being called a "big guy" or a big anything else for that matter.  But this was his way of saying, "Mom, I really don't feel like reading it out loud.  Would you mind reading the book to me?"  So guess what I did?  

Same thing anyone else would have done.  I read the book.  Turns out, reading it to him was better anyway, because we were able to work on speech and reading comprehension a little.  

And that little face?  Yeah, he can call me a "big guy" all he wants.  He's worked and continues to work so hard for every little bit of communication that he can call me a pink elephant if that's what gets the point across.  

Thanks be to God for every little bit of verbal communication!

Friday, August 17, 2012

Trying not to miss it this time

We're feeling particularly thankful this evening.  Our only air conditioning issue this summer was fixed, and by a great guy who didn't charge us after hour rates for the few minutes he stayed past five.  It's been a good day, but a touch busy with treat-making for a visit with our besties and their little girls tomorrow, the air conditioner guy, laundry, and our speech therapy appointment.  Usually she comes Tuesday and Thursday at three, but needed to come today at one.  No big deal, but it was during the littles' nap time.  

Usually, it wouldn't be a big deal, anyway.  And it wasn't until we didn't have milk for dinner.  Usually, if you tell Mae that we don't have milk, but we'll have something else instead, she gets over it pretty quick.  This time she acted like she'd been shot.  

She screwed up her face, wailed, cried, and all-around displayed her displeasure.  We reminded her that crying will not get milk to her cup any faster, offered substitutions, but nothing helped.  She was inconsolable.  

Then her head started to nod.  Her puffy, red, sad eyes drooped, then dropped, then bobbed back up.  Poor kid had been so excited to see our speech lady, K, that she hadn't slept.  No nap.  No matter how old she acts or thinks she is, she's still two.  Her little body can only take so much, then she has to rest. The milk was just the disappointing catalyst for shutdown. 

All of our kids have done this at some point.  Ryan fell asleep in his spaghetti when he was just under three.  Richie has done the same numerous times as well.  They go and go and go, then flop in a heap.  They're so young that, without me to remind them to rest, they will go until they drop.  They need someone to keep them in check.  

In "Missing It Again" we talked about the frustration of defaulting to the wrong behavior.  In a crisis, the opposite of what I need to do or know is best is too often my first response.  The freak out, the crying jag, the rant to a loved one.  We've all done it.  But how can this be the knee-jerk of a believer?  How than those two things exist in the same heart?  

My favorite example is David.  He was the man after God's own heart.  He was a crazy prolific psalmist.  He was an ancestor of Christ.  He was the slayer of Goliath.  But before we hear the metallic "ting" of David's halo, look at a couple of his knee-jerks.  

His desire to move the ark of the covenant was greater than his desire to obey the way God specified to move said ark, and it cost him not only a life, but the privilege of building the temple.  Later, caught in an adulterous relationship, his knee-jerk was to have the woman's husband killed.  

The difference in David and so many other hailed heroes of the bible and anyone like, say, Lucifer himself?  A confessing and repentant heart.  A pull back to God.  

The same heart that committed these grievous things the bible calls sin is the same man who penned so many psalms.  One of my favorites, Psalm 51, could not have been penned from a perfectly clean heart.  It could only have come from a heart that had seen and was seeing darkness, and so desperately needed light.  A heart that had run smack into a wall, and needed a breath of air.  

A heart so much like the one that beats in my chest.  The one that, so much like that tired little girl, throws a fit over something ridiculous while missing the thing I was created to need... the rest that comes from allowing the correct thing to fill the God-shaped hole.  

I miss it.  I try to fill the hole with cleaning better, organizing better, decorating better, gardening better, crafting better, sewing better, writing better, even doing more bible studies and attending more of this at church and less of that elsewhere.  But is that what it's really about?  All of these things will eventually come to a close.  None provide peace. It is only in releasing the striving after these things and the embracing of the knowledge that I'm just not enough... and the looking toward the One who is.  

I'm gonna do my best with this Richie having surgery thing.  I'll appreciate your prayer for him, and that Eric and I do a good job of dealing with this.  I'll pray that we'll all look up when we hit our walls.   And I'll try to remember that sometimes we need those walls to remind us who we are and Who we need. 

Thanks be to God for turning our chins upward!

Thursday, August 16, 2012

Missing It Again

Here we are again!  Sorry I missed you yesterday.  No really... I missed getting to sit here and tell you all about how great Ryan was to his sister yesterday, how great he and Maelynn both were for Richie's audiologist appointment in College Station yesterday, but I was so tired after that trip that I needed to chill and catch up with a little reading.  I was still pretty freaked out and needing a break from figuring out how to orchestrate this surgery mess for Richie next week.  It's on the very day that Ryan has meet the teacher, and it's an hour and a half out of town.

What?  You didn't know Richie was under the weather?  He's not, but he is.  Let me back up a bit.

About two weeks ago, while we ate lunch as usual, Richie turned very red, seemed very stiff and leaned over.  His eyes began moving quickly side to side.  He cried out "Mommy... the house!  The house!"  I ran over to him, my mind racing a thousand places in a second.  All the possibilities flooded me, including the brief, bone chilling, heart shattering thought that something could be happening that would take away my sweet boy.  Choking?  No.  He could talk.  Heart-something?! Neuro-something?!  What in the world...?!

A couple of minutes later he was able to tell me that the house was "spinning around and around" and that it was scary.  I had no idea what to think.  After a few panicked calls to the doctor, we wound up in the office, telling him all about what we thought might be a seizure.  A few x-rays and a lot of jabbering by mama later, we learned that Richie had (and likely still has) a very serious sinus infection, as well as a double ear infection.

This is where mama starts to hang her head.  I had no idea.  He hadn't acted sick, hadn't had a fever, and really had no symptoms to speak of.  But he was obviously in some sort of pain.

I feel so bad.  I had no idea.

I'm the mama!  I'm supposed to know them better than anyone.  But if there's anything that life in this little family has taught me, it's that I'm anything but in control.

Lesson re-learned last night.  After a trip to the audiologist then back to the ENT, we came home with a surgery date looming.  Adenoids and tonsils out, tubes in.  I know it's routine surgery.  But it's my Richie.  My little golden-curled angel of a spider monkey who has to give me hugs and kisses "onna cheek" after gently moving my hair to the side.  I'd be lying if I said I'm not scared.  I woke up in the middle of the night last night, heart pounding, thinking of nothing but those doctors and my little Richie.  And the fact that I didn't know.

Here's where I get to admit something else... I'm weak.  And a little unintelligent.

No, I'm not going off on some self-deprecation trip.  It's the truth.  I can handle a lot of things, but when things start to happen to my loved ones, especially my kids, and I unravel at my very core.  In an instant, I forget the years of trials and messes God has carried me through.  And it's maddening.

For a long time I doubted my salvation over it.  I doubted my ability to be a faithful believer because peace and coolness were not my knee-jerk reaction to adversity in any form.  My heart races, my stomach tightens.  I wring my hands, I cry, I contact my Mom and my in-laws, I ramble on through email and Facebook... sometimes all before remembering that while they all care, they can't change a thing.  They're in the same boat we are.  They hear what's going on, they pray for the outcome.

 I'm not knocking wise counsel.  I'm certainly not knocking the bearing of one another's burdens.  But there comes a time when no one with skin on is available to help.  When it's four in the morning, I'm sure there are friends we can call if we truly need that person with skin on, but even then you have to hang up sometime.  Then what happens?

So here's what I did.  After flip-flopping in my bed, deciding not to wake my husband (who had pulled an insanely long day the day before), I remembered what I needed to do.  I silently poured out my fears to my Father.

As I woke this morning to a beautiful little girl climbing in bed with me, I realized first that I had been asleep... then that I had fallen asleep much the same way she was now...  curled in the warm arms of someone I know to be faithful, ever-unchanging, and who loves me more than I can imagine.

I pray not that my children will never experience adversity or pain, but that they learn to find rest in the only true source of peace, hope, and joy.  And that someday, that peace will be my knee-jerk.

Thanks be to God for his comfort!

Tuesday, August 14, 2012

The Grapes of Progress

Last night was pretty normal, no biggie.  We were rocking along as usual after Daddy went back to the band hall after dinner for rehearsal.   We did all the usual things, with the usual amount of prodding from mama for the no-fun things like toy pickup.

After baths, we all kinda congregate in Maelynn's room.  In a manner befitting "Wild Kingdom" we funnel all the kids into Maelynn's room because it's closest.  All our kids, neurotypical and neurodiverse alike, still need help dressing in one way or another.  Which reminds me... do you realize how funny boys' underoos look on backward?

Anyway, as I attempted to organize this mass chaos, Ryan walks about four feet from me and says "To mommy."  About a second later, I look up just in time to see not only a hollow, plastic bunch of grapes  fall into my lap, but to see Ryan giving me full eye contact.

I about fell over.

"You're trying to play catch with me!  Oh my gosh, Ryan!  That is so cool!"

And we did.  Sorta.  He catches worse than his mama, but that's okay.  He asked me to play.  He wanted to play with me.  We did attempt to play catch for a couple of go-arounds, but then he lost interest.

This is one of those things that I waited for.  This is one of those little milestones that made me quit reading those sweet little milestone emails that any baby-affiliated organization sends now.  One by one, and sometimes a bunch at a time, he missed them.

If you knew how much time I have spent, especially when he was tiny, begging to roll the ball to mama.  If you only knew the sick, vacuous feeling of knowing that something isn't right, but being determined to prove them wrong.  I can tell you until I'm blue in the face, but it's hard to feel until you've felt it, and then comes the catch... I don't want you to have to.

We still have such a long way to go.  But there are shining moments, although few and far between, when we get to see him play the way we've wanted to all along.  And the look on his face? Pure pride. It's like he'd been practicing for days and couldn't wait to show me.

And let us not grow weary of doing good, for in due season we will reap, if we do not give up. ~Galatians 6:9

We will keep pedaling.  We will keep encouraging, driving to therapies, reading, researching, and praying.  We will keep going even on days when we don't get a nice surprise like his first voluntary game of catch with his mom.  We will keep going.  

Because he's amazing, and he's ours.  Or wait...

Because he's a child of God.  

Thanks be to God for the gift of progress!

Monday, August 13, 2012

Date night!

"Come to me, all who labor and are heavy laden, and I will give you rest."
~Matthew 11:28

Our church had a parent's night out last Friday.  They have these every so often, but I've been a little nervous to sign us up.  That old fear of being told "yes, this one and this one, but please not THAT one" again.  It hurts bad, folks.  Doesn't take much to make you afraid of it happening again. 

I must add that I have no basis for thinking that these people would say that.  Ryan has been welcomed overwhelmingly by everyone here.  But old habits die hard.  In the interest of taking my own advice... stepping out, reaching out, and admitting I need an evening without chicken nuggets... I sent the email.   

The organizer of the event was more than happy to listen.  She really listened, and even thanked me for, my tips and heads-up.  They sound a little crazy, I must admit.  

"...don't start a puzzle with him unless you're sure all the pieces are there.  He cannot handle an unfinished puzzle.  He'll color best, if that's an activity at all, if he can color by number.  I just found this out this summer!  He absolutely LOVES water.  If he sees a faucet or fountain he will want to turn it on and play in it.  This is a problem we fight at home.  If he should start this, redirecting is the best plan."

Sounds a little overprotective mom-ish, no?  Well, of course not to all you who have ASD kids.  But I desperately needed a break.  Eric desperately needed it too.  So, with a few emails like this under our belt that were met with compassion, trust, and understanding, we went for it.  

Dinner at a Japanese steakhouse.  Open flame right in front of us!  Just the dinner prep would have had Ryan through the roof.  He would have loved the chef flipping implements though.  

Oh wait... we're talking about the kids again... but that's okay. 

After dinner, we ran into my favorite craft store in Waco, right before it closed.  No really.  We RAN.  It was awesome.  

Then what to do... what to do...  then Eric turned to me and said "Honey, you've never seen the suspension bridge all lit up in the evening, have you?"  

Why, no!  No I haven't!

I have now.  The above is a view from the bridge.  It was such fun!  There were a couple of college guys with a huge bag of tortillas, feeding the ducks.  We walked up to watch them, and they let us throw a few!  

On the bridge.  You really ought to go there!

My sweetie.... my Prince Eric.  Yes, like Ariel.  Except I still have my voice.

After the bridge... we even saw a rat that wasn't too afraid of people.  He wasn't aggressive, but when a rodent looks up and says "beautiful evening, eh?" I'm pretty sure he's not worried about my presence.  He was not, however, interested in taking a picture of us, so we had to settle for the arm's length shot. 

We picked the kids up, and they were safe and happy as clams.  It seems everyone enjoyed all of them.  

A true picture of a caring community.  Without understanding, caring volunteers, this would not have happened.  It was a needed respite.  Those three hours were glorious.  

Once we had the kids in the van, we drove home, singing along with Daddy playing DJ.  All of us had a great time!  The kids enjoyed it as much as we did. 

Thanks be to God for Redeemer!  

Friday, August 10, 2012

The Haircut Chronicles

"Everybody hold your breath and pray.... Ryan just asked for a haircut several times. I'm getting the stuff. Stay tuned!" ~My Facebook update last night

Ryan hates haircuts.  HATES.  I'd even call it a phobia.  For a long time, if I even entered a room holding scissors he would lose it.  When it came time to actually do the deed, he thrashed, cried screamed, shook, and seriously made me wonder if CPS wouldn't pay a visit.  

We've tried just about everything we can think of.  The only thing I can think that would make it any easier is to masking tape a towel all around his hairline... and I mean ALL around his hairline... to keep any hair from touching him.  We have tried shears and clippers.  We're tried the comb and the guide with the clippers.  We've put on his favorite show.  I've held him in my lap.  I've let him choose scissors or clippers.  Nothing doing. 

Last night, while we picked up the living room (ok, so I was picking up and begging, cajoling, bribing them to help) Ryan said this: 

Ryan have a haircut.  

When asked to repeat himself, he said the same thing.  He has been a little shaggy lately, and his hair is really thick.  When your hair is really thick and it's over a hundred degrees in the shade, it's time to get a haircut.  

So I ran to the bathroom, pulled out what I needed, grabbed a kitchen chair, turned on a nice, calming video, and invited him to the chair.  He immediately hopped in and began spewing lines from the social story for haircuts he has on the iPad.  Immediately, I thought to play along.  I talked through as much of it as I could remember with him.  

I combed his hair, and he giggled.  GIGGLED, folks!  This is the same kid who wouldn't tolerate a brush not that long ago.  

Turned on the clippers, and the hum didn't make him freak out.  He giggled more!  I told him "haircuts tickle" and he repeated it, still happy as a clam.  

Even the first few passes through his hair he just laughed, squirming just a little, because as we just learned, haircuts tickle. 

Then, just as I began to relax and think this would be no big deal, he turned.  

He could take no more.  Cool, collected, happy Ryan was gone.  And honestly, it frightened me how quickly he changed gears.  One second, laughing like crazy, smiling, no big deal.  A millisecond later, red-faced, screaming, crying, and swatting at the comb and clippers.  

The job completed, he immediately began hopping around the house asking for a bath.  All evening and this morning, he repeated "You love your haircut" in his usual newscaster voice. 

I must tell you that Ryan has greatly improved in the haircut department.  It's still hard.  It's still painful to see him that upset.  But it is better.  I must not forget!

But still, I cannot describe the sick, panicked feeling when he snapped.  And this is a haircut.  It's not something I can start and stop.  Yes, I could if I really wanted to, but he has places to go, and I don't want him walking around looking like he has mange.  He was able to get himself somewhat together off and on, which is way more than he used to be capable of.  

Sometimes, you just have to get it done.  Get it over with.  Rip off the band aid.  Along the way, things come up and people who know give advice and you're able to tweak the rip a little, but it's still a band aid.  

My other two kids were watching this.  Both of them supporting their brother.  

It's okay, Ryan!  

Richie, who has golden curls that I trim but will not cut off, offered to get his hair cut too.  So did Mae. I think they did that more out of wanting to show him that it won't hurt than anything.  But we know that doesn't work.  Last time I gave Richie his trim first, and cut Daddy's hair, then Ryan still flipped.  

It's not just haircuts.  It's the washing machine.  Dishwashers.  Candles.  Any food he's not used to.  The fact that we have to leave hotels.  The fear that he won't get to go back.  The fear that he won't get to ride the people train again.  

It's the circles.  Yes, circles.  When first handed a crayon, he'd scribble mostly circles.  He still draws circles in the air.  There is a rule at our house that no train tracks are to be laid in a circle.  Who has rules like that?

It's the addictions.  No, not controlled substances.  To toys.  Objects.  Ever since "Hiro" the engine, we have had to learn to watch for budding addictions.  Addictions to toys?  Yes.  He wouldn't go to the bathroom, eat, sleep, or even pull up his pants without Hiro in his hand.  He never played with Hiro; he just needed him.  If Richie came in the room during one of the few times he'd actually placed Hiro on the track, he would scream and generally freak out.  If Richie touched Hiro, all bets were off.  

It just gets tiring.  Watching your child go through something as misunderstood and vastly diverse as autism is hard enough, but the anxiety over having to have things exactly the way they need to be is more than tiring.  I would, if it would help, promise the kid ice cream after his haircut.  Or anything else.  But it's not a "fit" and he's not trying to get out of it.  He can't take it.  There's something about it that he just can't take.  Yet. 

The thing is, it's worth it.  Just as I couldn't stop giving him his haircut, I can't stop trying.  I can't give in to the frustration and refuse to help the kid learn to deal with life.  I can't stop protecting him, allowing and/or pushing him beyond reasonable limits, but the haircuts of life will always be there.  I can't take out everything that will hurt him, scare him, or hurt my feelings.  Instead, we have to keep going.  Prepare as we can, do the best we can, learn as much as we can, supporting research where we can, and doing our part for a better future for all our kids, while not losing sight of today.  

And while not forgetting what these trials are making of us.  

Before autism, I was more selfish, more lazy, more judgmental, more pharisitical.  I wasn't as tired and stressed, but I wasn't as patient and empathetic as I am now, either.  I wasn't as dependent on my faith.  I wasn't as interested in bible study, and kinda saw the need to be interested, but there wasn't much of a draw.  

One of my favorite guys in scripture is Paul.  While imprisoned under King Agrippa, one of the times Paul was summoned to speak, the king asked if Paul thought he could persuade him to be a Christian, given a short time.  

"And Paul said, 'Whether short or long, I would to God that not only you but also all who hear me this day might become such as I am—except for these chains.” ~Acts 26:29

While I would not wish autism on any of your children, even if in doing so it would leave my child, I would wish that you would have the chance I have to see such amazing things happen.  To be elated over a single word or bite of food or ride in an elevator.  To be challenged to the core of your beliefs to the point of knowing beyond the shadow of a doubt who is in control.  To know the peace, relief, and joy that comes from knowing that there is a plan, and you are not responsible for putting it together!  To experience the gratitude that comes from the struggles and the simply amazing parts of this life.  Not that you don't have any gratitude in your life, or any amazingness... but when you have something wonderful, even in its own way, don't you wish you could share it?

I pray that you do, and you will.  I pray that we'll all be able to see beyond the face of things, into the inner parts where God is working 'round the clock, behind the scenes, creating the scenes, to make our lives colorful, wonderful, diverse, and abundant.  

And a hearty thanks to God for all of you who dropped everything and prayed with us when the time came last night!  

Thursday, August 9, 2012

The Stinky Bear and the New Bear

What would you say if I told you these bears are identical?

To anyone outside our family and friends, these bears are completely different.  But take a closer look as my lovely assistant, all ready for bed last night, displays them a little closer to the camera.
The bear on the left was a shower gift for Maelynn before she was born.  She has a heart on her belly that says "Princess" in pink.  We decided to call her Princess bear, but Maelynn changed that to Bearbearbear.  Yes, the word "bear" three times, real fast.  

The bear on the right is Spare Bear.  My Mom bought Spare Bear for a scary amount of money when we thought we'd lost Bearbearbear for sure.  But it was nothing doing. She would have nothing but her Bearbearbear.  

Bearbearbear isn't clean, she isn't pink, and she isn't even soft anymore.  She has been in places no bear should have to go, and covered in things no bear should have to wear.  

Oh wait... I neglected to tell you that Maelynn insists that Bearbearbear is a boy.  Strange, I know. 

So HE has been through quite the wringer.  And honestly, it's a little embarrassing when we go somewhere like the church nursery and she presents this dilapidated, ready for the recycle bin stuffed animal as her precious jewel.  There are times that bear stinks to high heaven.  And for some reason, Maelynn has decided that Bearbearbear does NOT like his bath, so I have to sneak him into the washer, always with the burgundy towels from the back bathroom in hopes that he'll fade back to pink.

Spare Bear is beautiful, fluffy, and the bright light pink that Bearbearbear once was.  He's soft, and even has that little sparkle in his fur that Bearbearbear once had. 

Although Bearbearbear is stinky, limp, rough, and matted in spots, I'm proud of the way my daughter deals with the two bears.  

This bear goes where Maelynn goes.  He's been lost umpteen times.  He's been stepped on, sat upon, snuggled, dropped, thrown, and pulled.  There was even a night when we left him on campus at Baylor.  One of the students found him and rescued him, bringing bearbearbear to his work study job in the very building where Ryan has therapy.  Every time he's been lost, she's wailed like it's her first breakup.  Her heart is visibly and audibly broken, especially that time we left him at Baylor.  

That time, we had to wait until the next day to pick him up.  I had to convince her that Bearbearbear decided to spend the night in the bear habitat on the Baylor campus with the "Sic 'Em Bears" as my kids call them.  

Imagine my relief when she, albeit reluctantly, bought it.  

You better believe I baked that college kid cookies. 

I'm glad she's proud of her Bearbearbear.  I'm also glad that she'll hug and love on and play with Spare Bear sometimes.  But at bedtime, it's all about the original.  

Even though I do wish that Spare Bear worked as we intended, because so many smart parents have a spare that works in case he gets lost, I love the fact that she won't ditch the old and faithful for the shiny and new.  

Too often I ditch the old and faithful for something that looks better, faster, smarter, and easier.  I'm tempted by the most comfortable instead of the most useful.  

Too many times I'm blindsided by my own emotions and wind up knee-jerking my way down the wrong road, only to realize that if I'd stopped to think, to pray, to remember... then I'd have saved myself and my whole family a lot of trouble.

Too often the truths of scripture, even proved again and again in my life experiences
 are neglected as I turn down the too-automatic road of panic, worry, doubt, and fear.

I know the right things to do.  I know what God expects 99% of the time.  But still, every day, I jump the tracks at least a few times.  

But the best part?  

When I do come back, I'm welcomed.  I'm welcomed whole-heartedly when I return whole-heartedly.  But I have to return.  To heed the tap on the shoulder that asks if I've opened scripture today.  Every time I'm renewed.  Challenged.  Comforted.  

I've found my long, lost friend.  My comfort, my peace, my refuge.  But way more than a stuffed animal... this comfort transcends time, race, languages, even worlds.  

Thanks, Bearbearbear.  

Thanks truly be to God for being my guide, my stay, and forever unchanging.  
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