Carrying

Today, I was doing so great.  Climbed out of bed at 6:00, awake. Happy.  Yes, you should be amazed.  If you know me in real life, you're still shocked.  Maybe it was due to the time change so recently, maybe the planets aligned, but to whatever you choose to accredit it, this life-long anti-morning girlie was up and ready to stay up.  In another twist of fate, my dear husband was not.  I was so proud of myself this morning.  If there's ever been a morning I had it close to together it was this morning.  Eric had eggs and toast for breakfast, left for work on time, and even feeling a bit better about the world in general than he did when he got up.  Ryan did great, so did Richie and Maelynn.  Just a great morning.  On time for school, on time for my Monday mama prayer date, back home in time to get the kids lunch and clean up the kitchen and wash diapers, then still be on time to get my big guy from school for therapy (or "ferrisbee" if you're Richie).

Then we get Ryan.  A twentysomething looking man brought him out, letting him run ahead of him... turns out he's the sub.  Ah.  Upon inquiry, I find that Ryan has had a good day but wasn't too thrilled at missing recess due to the rain.  Yeah, typical.  Change in routine throws him almost every time.  He climbs in the van, and I immediately notice his hands are covered in something... marker, maybe?  Very unlike mister fastidious.  Spill a drop of milk?  Get a little catsup on his hands?  "Wipaatoweeeeel!"  Mr. Sub Guy didn't explain, but hey... he made it through a class of 21 kindergarten kids, at least one of whom has special needs.  Gotta hand it to him though.  He did lack that deer in the headlights look that subs for PPCD usually had.

For a while now, Ryan's been attached to Stevie Wonder.  The old funk-sound type.  He's been hooked on one song for about a month now, and just recently has been listening to more on that CD.  When he got in the van, I had been listening to my iPod, and let's just say after a loud button-mashing fest I managed to get things settled and we were on our way.  He settled on the one song on that album I"m not crazy about, but it's not so tough to listen to something over and over when you have a little guy dancing in his own way and thoroughly enjoying it.

We pull onto campus after averting what could have been a huge meltdown when road work caused us to detour past the children's museum.  "Go see trains?"  "No sweetie, it's time for Ms. B."  He accepted that.  So relieved!  After the usual stroller out, two kids unstrapped, harnessed, unbuckled and one restrapped into the stroller we were on our way to the building.  The "big elevator" has been sick lately, so we've been using the "little elevator" on the other end of the building.  This time it was working, but all the way in Ryan wanted to know which elevator.  "We're going to the LITTLE elevator," he said over and over, in between my explanations that we'd like to use the big one if it's well.

At the elevator, I put Ryan on my back and picked up Richie on my front, pushing the stroller onto the elevator as a nice lady held the doors for us.  She was friendly, which is such a relief to any mom... but not being treated like a cheap circus sideshow when you already feel like one is just fabulous.  I explained that one kid had a love/hate relationship with elevators while the other just has to be just like his big brother, and she totally seemed to get it.  Love it when that happens!

As we try the drop-off, Ryan shows off what we like to call the "waternoose jump n stim" as he watches the elevator from his elevator-watching perch in the hall (not too close, but he can still see it open and close).  When Ms. B arrives, Ryan continues his thing and Richie thinks he has it made.  Nope.  When Ryan went in and the door shut, Richie fell nine kinds of apart.  This was no longer fit mode.  This was real tears, pouring from the pain of unfairness and just flat not understanding why in the world brother gets to go and he doesn't.  Such a cool place with such cool toys!

Just before this, as we waited, Richie told me it was his turn to go see Ms. B.  I have tried everything from explaining Autism in kid-terms to focusing on what cool things he gets to do that Ryan doesn't, but when that door shut in his face, it just didn't help to know that he gets to spend time with Mommy and Maelynn.  During our waiting time, he even tried to tell me that he has Autism.

NO. YOU. DON'T.  Thank the Lord, you don't.

We've visited this topic before in Knockin' Round Baylor.  I've continued to do my dead-level best to help this feel less like a sacrifice of his time and help the time be such fun that he really doesn't notice that we're taking two three-hour chunks of his days every week to drive Ryan to therapy.  I want all of our kids to feel special, loved and heard.  I want them to know their parents love them and that their feelings matter to us.  Every other time I've managed to just stay happy and drag him away to a more fun activity, but today?

Today I sat and held my precious, curly-golden-haired baby boy and cried with him.

As a band director, one of the first things you learn about picking music is that slow and pretty does not equal easy.  It takes great control in several ways to play musically as you play softly.  Nothing wears you out faster when you *ahem* haven't played much in a while than to play something slow and pretty.   I'd even argue that it can't be done without hours and hours and days and weeks and months or even years of daily practice to perfect the art of playing an instrument.  Once you have that ability, you could even make someone cry with the Alphabet Song.  If you lack the practice, it can't happen.  The muscles haven't been built; therefore the strength needed to support gentleness just isn't there.

It hit me earlier this week that it's much the same in life.  It's easy to tell someone to suck it up.  It's a lot easier to tell someone to get over it, and let's go do so-and-so than it is to sit and cry with them.  It's a lot easier to tell someone they need help than to be the help.  And more than that, it's easier and simpler to look at someone and tell them what you think they need to be doing.  Handing down a judgment, shaking your head, and walking away is not tough.  It may make you more calloused and tough... but it takes far more strength to hold your opinion and open your heart.  Part of this is relinquishing the idea that you can make someone feel happy, special, loved, comforted, etc.  No one can make another feel anything.  All we can do is give gifts of our time and hearts, and when given out of the right heart, those things can change someone's world.  When given with no strings attached, nothing expected in return, no price tag of guilt, no gain of pride... just to inspire another to turn their countenance upward and hearts light... the gifts of time, money, things, even just our presence can completely change a life.  But to go with the impulse of anger, frustration, a need for control, or even the latest thing you heard that someone else did or does can do irreparable damage.  What comes naturally and easiest isn't always best.

I still believe in helping my children feel loved and special and making sure I do what I can to help them be who God made them to be.  But I also believe that ultimately all any of us can do for anyone is listen, give real, true, abiding love... but mostly, and most importantly... carry them to Jesus.  Pray for them, with them if they will let us.  For Richie, today, the best thing I could do is teach him with my arms around him and the tears on my face that his hurt is real.  It is real, and I hurt too.  Because when you're hurting, the last thing you want to hear is "just don't hurt" or "if you'll just listen to me I'll fix your problems" or some such nonsense.

When we picked Ryan up, we found out he'd had a rough therapy session.  They're working on trying new foods, and at one point he even threw up.  Tonight, he's already melted down over having to wait his turn.  It's so hard to watch as he just doesn't understand.  It's excruciating to watch any of the kids hurt.  To try to explain what's going on is so often not helpful.  It might soak in an help later, but not at the moment.  Even as we picked Ryan up, Richie threw down because he wanted to go have "his turn". Ms. B looked at me and said, "If he only knew how hard Ryan works in there..."  and all I could do was thank her and walk away.  Well, lumber away with a screaming three year old on my hip and a jumpy, stimming six year old at the side of the stroller.  Of course, all Richie knows of the therapy room is the cool toys from the times we've had meetings there.  Ms. B and I talked about how Richie probably thinks all Ryan does in there is play with all those cool toys while we're out waiting for him to be done.  In reality, he's learning life skills... like how to wait, how to take "maybe" for an answer, how to try new foods, and, skill by skill, how to just live in the world without screaming and hitting constantly.

What do I do when it hurts them and I just don't know what to do?  Show them I love them by listening and hugging and just bearing with them, holding the advice, frustration, control, and at times the discipline for later.  Because as we've all learned at one time or another, sometimes whatever it is, it just hurts.  Whether it's Ryan's meltdowns, Richie's disappointment at not getting to go, or Maelynn's being told "no",  sometimes it just hurts.  As Crystal and even as Mommy I can't always fix it, but I can bear with them, support them, and lead them to someone who can.  So from the bottom of my heart, to all of you who are in my path daily and to those who I've met in the ASD community... I can't understand, but I hurt with you.  I can't know your pain, but I will cry with you.  And I will carry you to the one who can understand.

I will not pretend to feel the pain you're going through

I know I cannot comprehend the hurt you've known

And I used to think it mattered if I understood

But now I just don't know

Well, I'll admit sometimes I still wish I knew what to say

And I keep looking for a way to fix it all

But we know we're at the mercy of God's higher ways

And our ways are so small

But I will carry you to Jesus

He is everything you need

I will carry you to Jesus on my knees

It's such a privilege for me to give this gift to you

All I'd ever hope you'd give me in return

Is to know that you'll be there to do the same for me

When the tables turn

And if you need to cry go on and I, I will cry along with you, yeah

I've given you what I have but still I know the best thing I can do

Is just pray for you

I'll carry you

I'll take you to Jesus on my knees

          ~"Carry You to Jesus", Steven Curtis Chapman 

And I know you do the same for me. Thanks for reading.  :-)

Quittin' time, part 2

Sorry I made you wait for the rest of this.  I keep thinking I'm going to have more time, and every time I think that something comes up.  When will I learn?  The bad news is my best friend is sick tonight so what I was hoping I'd be doing isn't going to happen.  But the good news is I have the rest of the day (and I mean until like 1:00 tomorrow morning) to get the stuff done I need to do today.  So here I am.

If you're wondering about part 1, click here. Now that we're all on the same page...

So after I left bible study, I reminded myself at times audibly that God is in control.  There's always a reason.  Always.  Even when we don't know what it is, there's a reason.  I went home, changed the littles' diapers and stuff, got what we needed and went to the school to get Ryan.  I was almost sure that since his aid wasn't with him, I'd have to get the kids out and go in and get him, since I pick him up in the middle of the school day.  Imagine my surprise to see his teacher bringing him out.  When he got to the van, it went something like this:

Me: So how'd he do?

L: We're good.

Me:  We're good?  Oh, he had a good day?

L: No, we're GOOD.

Me: Um... you mean we don't need to hire someone else good?

L: I'd like to try it.

That last comment and the look on L's face I will remember for eternity.

She went on to describe how well he'd done since lunch the day before, when his aid had resigned. Not one meltdown.  Little fits, but no meltdowns.  Being the mommy I am, I had to make sure he was safe.  Satisfied with her answer, I put my official mommy-seal on the deal and we agreed.

RYAN IS IN KINDERGARTEN WITHOUT AN AID!

Full inclusion.  All day.  Only someone to help with music and p.e.

After searching the van for and reattaching my chin, we headed to therapy.  Soon as I was out of the school zone I called Eric.  We both teared up.  I think we both said "FOR REAL?!?!" about ten times.  The only other thing that we could manage to utter was Praise God.

It has now been a week and a half.  If Ryan's folder was still here, I'd show you the happy faces and "Great Day" markings on his behavior chart.  I am still in utter disbelief.

I'm in disbelief that he's doing this!  We are so proud of him!  We are so proud of his teacher!  We are so proud to be in a school district that makes the paperwork fit the kid instead of the kid fit the paperwork!  I mean, he still needs some support.  But when you're in a place where all the teachers actually really do care about the kids... all of the kids, not just the easy ones... kids like Ryan get a shot.  They get a real shot. And when they fall, others pick them up, dust them off, and give them another shot.  I cannot tell you how grateful I am for God's providence in all this.  For the teachers, administration, the special programs department, his teacher form the last three years who still checks in on him, the aid who knew for whatever reason it was time to go... all of this, we are so grateful.

I don't know why God chose to give us all He's given us.  I could begin listing it all, but don't think blogger would allow me the storage capacity.  Just looking around in our family, just seeing our three kids smiling at us, is more than enough.  We're healthy, my husband and I love each other, we still have my mother, his parents, and his Nana, we have our sisters and their husbands and families, and we have extended family.  We have a fabulous church, wonderful friends, and a roof over our heads.

As King David said in 2 Samuel 7:18, "Who am I, O Lord God, and what is my house, that you have brought me thus far?"

Who am I, Lord?  Who are we, that you have brought us this far?!

Thanks and much praise be to God!

Quittin' time... part 1

Aaaand I'm alive.  This fall (if you can call it that in central Texas) has been fabulous, just very busy.  Somewhere between my crafty-time, trying to get the house decorated and settled for real (I'm so not a decorator), keeping up with driving to therapy, church, all the stuff that's important to our family and still managing to be able to keep the daily stuff like dishes and laundry done is keeping us so busy.  I won't even go into how exciting football marching season is for us... well, let's just say we're busy but happy.

Somewhere in all the excitement last week, I was taking time for one of my favorite mama treats, our ladies' bible study here in town.  Discussion had just ended and we had just settled into our chairs after singing for a few minutes when my phone rang.  I picked up my phone and tried to make my way out of the room, my hunched-over shadow taking off poor Beth Moore's legs on the screen.  Sneaking into the church library I answered. It was our diagnostician.

If you've been in our situation or something similar, you know how your heart can drop when it's not time for a yearly ARD meeting and the diagnostician's number is on the screen.  Usually it's not great news when she's contacting me, and I had that sinking feeling in my gut that says there's something up.

Hate it when I'm right.

She was gentle and sweet and calm, but there's no good way to deliver it.  "Mrs. Senzig, I just wanted to let you know that as of yesterday at lunch *Ryan's aid* has resigned."  After that it was just kinda emotional freefall.  I don't generally go nuts over these things.  I manage to sing my version of that Veggie classic "God is Bigger than the Boogieman" in my heart, and it's eventually all okay.  I managed to be all business on the phone, using my version of what we affectionately called Nanny's "Tupperware Queen" voice, but I was dying.  Seriously?  She really decided she couldn't do it?  I was surprised, frustrated, upset, sad, nervous... and just flat hurt that dealing with my kid wasn't possible.  Not at her.  I am so thankful that she knew her limits.  I like her, I really do.  I know she cared about him, I know she was good to him and wanted the best for him.  But a lack of training is hard to overcome when you're thrown into the deep end of the Autism pool on your first day.  She had managed to rally and we were all proud of her for that, but in the end it just wasn't something she could keep doing.  And that's okay.  Really.  We're thankful for the time she spent with him, the effort she spent, the heart she spent.

So after she promised they would keep looking for an aid, told me that I'd need to bring Ryan just a little later to school so that he'd be with his class when he showed up (long story), and assured me that he was safe with a temp aid for the next two days I hung up and went back to class.  I did pretty well, listening and keeping up with Miss Beth on the screen.  Then I told my friend Melanie, who was right beside me, who then suggested I tell the rest of the ladies so they could be praying.  Actually, she volunteered to do it for me, and (being me) I said I'd manage.  Right as I explained that I knew exactly what was hard and why because she basically was doing my job, I told them I could understand why she wanted to quit, because sometimes I do too.  And as those words left my lips, I crumbled into a pile.

If you've never experienced a group of people who sincerely love you around you, crying with you and praying for you, I hope you get the chance.  Attention is not my favorite thing, especially with a tear and snot-soaked face, blubbering with all I've got.  But there I was, humanity all over my face, exhausted, enrobed in the hands and hugs of women of faith.

They like to call us "Warrior Moms" at times.  Most days I wouldn't call myself that.  I don't deserve that.  I'm not petitioning anyone for the cause, not knocking on doors or breaking down huge walls in the area of advocacy.  I'm not one of the scientists searching for a prevention or a behaviorist studying a new way to help these sweet ones figure out this crazy world.  I'm just a mom.

Just a mom.

Just a mom who loves her children and wants the... no, God's... best for them.  Just a mom who would do anything needed for her kids.  Just another mom who keeps the sword and shield up on one side with the game face on, and usually manages to polish the shield and smile with the other hand in a somewhat futile attempt to keep our family going.  Fighting Autism's symptoms while at the same time attempting to help our family learn to act in a way that is palatable to society as a whole.  All this without losing who we are as a married couple, plus laundry, dishes, social planning (anything social takes a ton of it), potty training, keeping up with all the usual homemaker stuff, and what?  I'm supposed to look like a human when I step out of the house?

Yep, just a mom.

And there are millions of us.  Being the warriors our family needs.  But for every time someone's called us "supermom" there are about a hundred times we feel inadequate.  Frustrated.  Hopeless.  Tired.  Weary.  But that moment of losing it... that moment where the cracks in the armor show and all the frustration, fear, and weariness pour from the floodgates... is the very moment when God shows who He is.  It's when we get to see that those people who say hello and ask how we are every Wednesday really do care how we are.  It's that little reminder that although people may never really get it, there are those who are cheering for us, whether or not they get the ins and outs of our struggles.  In our weakness, in that proof of our humanity, the world gets a little glimpse into what God is made of.  That He can do this through me?  ME?  Weak, tired, horrible at confrontation, recovering people-pleaser me?  Me who can't stop being selfish and at times lazy and impatient, sometimes all at the same time?

Yup.  In my weaknesses, He is strong.  He will not leave me stranded, even in my darkest times.  ESPECIALLY not in my darkest times.

Deep inside this Warrior Mom's armor is a scared, weary child who is tired and needs a hug.  And even when you wear as much armor as Autism Warrior Moms, sometimes it's that feather on the 2-ton barbell that sends us crashing to through the floor.  Sometimes something catches us so off guard that the armor falls and we need friends to help pick it up and put it back on... and sometimes hold it up for us.  Just for a little while.  Because even when your whole life and philosophy for living is grounded in the belief that God is sovereign, life can just be too much.

The story doesn't end there... stay tuned for part 2.  In the meantime, have a listen. :-)

The Warrior is a Child
~Twila Paris


Lately I've been winning battles left and right 
But even winners can get wounded in the fight 
People say that I'm amazing 
Strong beyond my years 
But they don't see inside of me 
I'm hiding all the tears

They don't know that I go running home when I fall down 
They don't know who picks me up when no one is around 
I drop my sword and cry for just a while 
'Cause deep inside this armor 
The warrior is a child

Unafraid because His armor is the best 
But even soldiers need a quiet place to rest 
People say that I'm amazing 
Never face retreat 
But they don't see the enemies 
That lay me at His feet

They don't know that I go running home when I fall down 
They don't know who picks me up when no one is around 
I drop my sword and and cry for just a while 
'Cause deep inside this armor 
the warrior is a child

They don't know that I go running home when I fall down 
They don't know who picks me up when no one is around 
I drop my sword and look up for a smile 
'Cause deep inside this armor 
Deep inside this armor 
Deep inside this armor 
The Warrior is a Child

But is it worth it?

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

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

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

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

Pray your pain.

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

Pray your hurt.

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

Pray your anger.

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

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

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

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

Is it worth it?

ABSOLUTELY.

Thanks be to God!

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

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

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

Knockin' Round Baylor Again... and again... and again...

How are ya?  I've so missed talking to you.  Really.  It's been pretty crazy lately.  We're getting used to Ryan's new therapy schedule, twice a week now instead of once.  There are many new things these days, from starting and getting used to kindergarten to a new church, and add into those the usual football season mess that a band director's family has going on, and it's, well... pretty crazy.  Since my husband is with the band at an away game, I have time to chat. 

In all the stuff that's going on, I keep coming back to the other two kids.  You know, the ones who don't need ABA therapy to keep from launching into true hysterics when the computer overheats and they can't finish watching that one Thomas on the internet.  The ones who are growing up in a family who is blessed with a big brother with Autism. 

We spend so much time taking care of Ryan's needs, making sure Ryan's routine is kept, making sure he makes it to this and that.  We work to keep a lid on his behavior, stay calm and even to make sure he has the foundation of calm, peaceful parents to build on. 

Not that we always make it, but we do try.  We want all our kids to have a fabulous time growing up.  We want them all to have great memories of things we did together, of the fun, unique situations most of us remember from childhood.  I want them to love each other.  To care for each other.  I wanted each of them to have each other... at least two good friends for life.  When Dad died, I remember sitting there watching the other three siblings talk and laugh about everything from life from day one.  They were in pain, they missed their brother.  But their presence comforted each other.  In their mother's house, they sat in the living room in her absence and told the stories of getting in trouble together, getting each other in trouble, and getting out of it.  Of fun times fishing, hunting, driving (and more than their parents crazy), school, sports, all of it.  Life. Lives lived together to a point, and still somewhat together across the states. 

I knew that moment I wanted at least three kids. 

At that moment, it is true that I had no idea Ryan had autism.  We had discovered that he did have some speech issues, because he was 2 1/2 and change and barely any words.  I was about 6 months pregnant with Richie.  Yes, I do have a sister... I have a very special, BFF kind of sister who is eleven years my junior.  She is precious to me in ways I cannot explain, yet completely different than the type of thing I witnessed that night.  A child of a necessary divorce, I grew up with one foot in eastern Oklahoma and a foot in southeast Kansas. The only people who can sort of imagine or discuss the way I really grew up are my mother, who was married to my father for a short but harrowing amount of time, and my husband, who has listened at length to my descriptions and made way more than one trip to Kansas with me.  So the desire to have my children have each other is, like so many things in life, purely of my own desire... completely selfish in its own way. 

The first meeting of this semester's ABA therapy sessions at the Baylor Autism Resource Center was to simply meet and discuss goals.  The new therapist this semester is much like the last one... smart, sweet, caring, and patient.  Chipper, happy, yet very aware of what she is up against.  I'm so grateful for the BARC and its students and directors!  Truly a gift of God.  At the end of the 45 minute drive, we arrived on campus, parked, and went in.  That sounds simple... but trust me, with my brood it's a trek that would make cross-country runners shudder.  The kids bounded into the room when B, our new therapist, opened the door.  The kids dove in and had a blast digging through the whole lot of cars, trains, balls, the whole nine yards.  While I attempted to talk to B about goals, Mae kept handing me random things.  At one point I was holding a giant stuffed bear, a plastic caterpillar, and a toy radio.  So much for taking notes, right?  I was doing well to think straight.

The kids had a wonderful time.  When our time was over, we picked up all the toys, put away the videos (for real!  Elmo on VHS!) and went on our way.  Back to the van, drive the 45 minutes home.  Then fast forward to Wednesday, the first real therapy session.  Ryan walked in the room with B, and Richie bounded right behind.  Only this time, I had to stop him.

"Richie, honey, it's time for Ryan's therapy.  We're not here to play today.  It's not your turn."  I tried to explain that we bring brother here to get help learning to do all kinds of things he doesn't understand. 

He lost it.  Crumpled in a heap, in real, frustrated, broken-hearted, I-totally-don't-get-this, It's-not-fair tears.  He wasn't just unhappy that he didn't get to play.  He wasn't just unhappy that his brother was leaving.  It was both.  Maelynn's beloved biggest brother wasn't there, her dear Richie was crying, so she starts losin' her little mind too.  And there, in the hall in front of the BARC, with other classes going on around, my 3 year old and 18 month old were losing it.  And it hit me. 

This time has to be special for all the kids.  It has to be about all of them, somehow.  Not just Ryan.  It HAS TO BE. 

Now, we're not strangers to the Baylor campus.  My husband is a proud Baylor graduate, and has taken me there on many occasions for games and the like.  I didn't go there myself, but it is a pretty awesome place to study.  So after about fifteen minutes of fussing (yeah, I'm a bit thick) I looked at Richie and asked if he'd like to go see the bears. 

"Go see da sit 'em bears?"

Yes, baby.  We'll go see them. 

So every week, twice a week, we drive the 45 minutes to Baylor.  We drop Ryan off at the BARC, then we walk around watching college kids, watching the bears in their habitat, walk around the bookstore (he loves to go to the tent... a tailgate display in the clothing section... and just stand there, saying "I in a tent!"  We go climb a little hill with a tree at the top, with Richie taking time to walk down the hill "backterds".  He also enjoys the fountain, walking up to stick his hand in the water flowing over the side. At the end of the semester, I've promised we'll do to the student union and get lunch, and then go to the bookstore and let him get a small green and gold football he's eyed, picked up, and snuggled every time we've been there so far. 

Every time, Richie enjoys walking around with Mommy and Maelynn, pointing out the kids riding skateboards, bicycles, and talking to the squirrels and the birds and the bears.  He smiles and says a hearty "Sic 'em" to all the real Baylor Bears on their way to class.  He pushes the buttons for the elevator, and when we get to the BARC to get Ryan, every time Richie asks, "Want my tuuurn?" 

In the chaos of keeping Ryan from running all over, all I can do is say "sweetie, just be thankful you don't need a turn." 

And pray that Richie feels loved, heard, and special. And that Maelynn does too.  Because they are wonderful, amazing, and special just as much as their brother.  I appreciate the fact that they're giving up their naptimes in their little beds, snug with their favorite pillows and lovies.  They're giving three hours of their sweet, precious days two days a week to making sure Ryan gets what he needs.  No, they don't have a choice.  But the days... the hours... of their lives matter, even if they're too little to complain. Brother's not more important, but we take care of each other.  We care for each other, and do what we can to meet one another's needs.  And we care for one another... we give... with a joyful heart. We may be tired, we may be flat exhausted.  We may not understand why.  But we do it.  We do it because we're family.  God gave us each other to care for, love, laugh with, cry with, wait for, and go through life with. 

And I'm inexplicably grateful that He did. 

I am weak...

I have a confession to make. 

I absolutely adore my kids.  They're awesome.  Because I think they're awesome, I want to make them feel special, and make sure they have every shot at being happy, well-adjusted, and content.  Seems like 90 percent of the time I spend making sure they understand the rules of the game.  You know, the big one.  The one we all play with spoken and unspoken rules.  The one where the only thing you can control is yourself, and there's just not always that much one can do about oneself at times. 

But having been on this rotating globe for a bit over 33 years, which is or isn't very long depending on who you talk to, I can tell you that I stink at the rules and the unspoken rules.  Especially the unspoken ones.  I like face-value, honest communication in love.  Believe it or not, this doesn't always win friends and influence people.  I really don't care who you know or what kind of car/phone/clothes you have.  I care who you are. Over the course of the first 27 years of my life I absorbed enough emotional abuse to make me completely uninterested in anything but honest, forthcoming, and true.  Don't get me wrong... I'm no angel.  I make more than my fair share of mistakes.  But the core idea remains the same.  It's an attitude; a heart condition.  I want to do my best to live the way Christ would live, and give others the benefit of the doubt that they're doing their best to do the same.  My biggest problem there is having the gastrointestinal fortitude to say things like, "no, I don't agree.  Yes, that hurts my heart.  Please stop saying that."  I'm not good at calling people on things, especially when I've seen how they've hurt others with words and/or actions.  Drawing boundaries... lines in the sand, if you will... is something I have to work hard at. 

The shortest way to say it?  I make a great doormat.

Not with my kids... not with my husband.  People I know I can trust to have my best interest at heart are different.  Take my husband.  I can tell him I have a problem with something he said, calmly and respectfully, and the biggest thing I worry about is seeing the hurt look on his face as he apologizes.  We talk through those differences, sometimes agreeing to disagree.  But when someone else disagrees or says something that I could contest, my brain often turns to mush.  Depending on the situation, of course.  I'm also one of those people who doesn't want to bother anyone.  Not one to ask for help.  And there is no "man's work".  I was raised by a single mother.  We put furniture together, we moved, we shopped, we fixed things, we painted, we lived... all with just a 30-something, gorgeous woman and a little girl.  How does this translate to doormat?  There's a whole other story there... one usually has two parents.  I had a great mother.  The rest is a whole other series of posts.

That said, read the term "warrior mothers" and have the hardest time applying that to me.  I think of "warrior mothers" as the ones who speak up on behalf of all of us in the trenches with our kids.  Those who are smooth enough to keep the sword moving with one hand and keep her own house going with the other.  The ones who are fighting this law and have raised money with that fundraiser, all while fighting their own battles with ASD in their own families.  The way I fight autism is more the way Hiccup in "How to Train Your Dragon" taught the villagers about dragons, using his accidental friendship with Toothless, the most horrible dragon known to vikingkind.  Hiccup sought to be like the other vikings.  In trying to kill a night fury, he found himself faced with a dilemma.  After cutting the dragon loose from his bindings, Hiccup begins the process of getting to know Toothless.  My favorite part of the whole movie shows Hiccup feeding Toothless a whole raw fish.  Realizing that Hiccup doesn't have a snack of his own, Toothless regurgitates half for the boy, sitting back innocently on his haunches after dropping the "treat" in his lap, expecting the poor kid to chew into a half of a raw fish.  Blech.  Following that little scene, this one touched my heart. 

Of all the crazy-tough, leathery Vikings, the weakest of all is the one who reaches Toothless and changes the village.  Humility, giving, sincerity are more important to learning about the dragon and explaining them to everyone else.  Gentleness and a willingness to listen and learn and adapt to learn about this completely foreign character.  As I watched Hiccup dance around Toothless' drawings, looking for his reactions, I can't help but think of Ryan's teacher from the last three years, his teacher this year, his aid at school, his aid and teachers at church, his Daddy and I, and all of us who come into contact with Ryan.  We have to think out of the box, learning about him, teaching him about us, teaching everyone about him... but remaining gracious and respectful.  In our situation, for the time being, it works.  There will likely come a time in the future when we have to draw our parental swords, but for now everything is going rather smoothly.  We have a kindergarten teacher and aid who are humble and willing to listen to not only us but the teacher Ryan had for three years.  And I'm thankful that the teacher Ryan had for three years in PPCD loves him enough to take the time to make sure she communicates everything that would be helpful, that all of us are willing to stay in communication about him. 

In feeling through these still early years of raising a child who has severe autism, it is inexpressably valuable to have the school system we have, the teachers, the administrators who care for our guy enough to make sure he has what he needs.  Everything dovetails so amazingly, so intricately, that I cannot explain it.  Coincidence just doesn't do it.  Even with the rough times we have dancing around the lines autism draws in the sand, it is more clear every day that "In him we have obtained an inheritance, having been predestined according to the purpose of him who works all things according to the counsel of his will." (Ephesians 1:11, ESV)

We are held in His hand, called according to the purpose He has for us.  I cling to this because it has not failed me yet.  It gives me peace and hope for not just Ryan but Richie and Maelynn... for everything.  The belief that God is soverign gives me the only confidence I have.  That faith is the only thing I've always had with me to rest on, the thing that never leaves, has never changed, and will never change.  It is the greatest gift I can give my children in addition to my love and care.  I have heard in the past that belief in a higher power... I've even heard God referred to as "an imaginary sky friend"... exhibits a weakness. 

Yep. 

Jesus Loves me, this I know
For the Bible tells me so
Little ones to Him belong
They are weak, but He is strong.
Yes, Jesus loves me.
Yes, Jesus loves me.
Yes, Jesus loves me.
The Bible tells me so.

I am weak.  I need help. He is strong, He is real, and He loves me.  Proof?  All I have, other than the Bible, is experience.  Some hard miles.  Lots of hard miles.  And through those miles I've learned that sometimes, nothing helps you become stronger more than admitting you're weak. 

Because it's all worth the times I get to touch the real Ryan.

Finding Ryan

"It's ok.  Daddy's got you.  I promise I'll never let anything happen to you, Nemo." -Marlin, "Finding Nemo"

On the way to therapy at Baylor for the first time this semester, I finally talked Ryan out of the Cadets CD, track #6 and put in the soundtrack of "For The Boys".  Once of my favorites since high school, it has a song I sang to both my sister and my Ryan when they were babies.  Soon as "Dreamland" folated through the speakers, I caught a glimpse of Ryan... big, six year old, kindergarten Ryan, stimming on the passing bridge... and had to fight back tears.  There are times when the before time seems like a lifetime ago.  You know, the before time.  BA.  Before Autism.  There are times that looking back on that time stings.  That innocence, that time before the different showed.  The time I spent rocking my dear, sweet boy, singing every song that's managed to lodge itself in my memory.  The times I danced around the kitchen to the Sesame Street CD (the one I had before we had kids).  Even the time before glaucoma.  The days I talked to him, and prayed for him, and dreamed about him and what he would become... those days aren't completely gone, but autism leaves one with little time to dream.  Reality tends to take over when you need good, solid routines.  Really, it's made us better parents, better people. But it does get rough.
To tell the truth, I've turtled a lot in the last six or so months.  Backed out of a lot in a desperate attempt to go back to the basics of our faith and who we are to answer the questions of what in the world we do next.  To wipe the slate clean and only add the things back that are best... God's best, not ours.  Ryan is definitely not a baby anymore.  Anyone who might have passed off his fits as "just being a toddler" can now see that we're not hyper-helicopter parents... there's really something different about him.  There's just something about turning five.  It's been a gut-wrenching ride for a long time, but it hasn't been as hard as the last six months or so since the very beginning. 

In a few isolated instances he even looks like a typical kid, especially when he's perched on the ottoman clutching a video game controller.  His profile struck me the other day, watching him play "Cars" with his daddy.  He looked like a six year old boy playing video games for just a moment.  One delicious, precious moment of complete normalcy. Then his sister got too close.  After screaming toward her, he got up and started running the car into a wall, stimming like crazy.  He is amazing.  He is incredibly smart and sweet.  But he is also very different, requiring different approaches to just about everything as the other two kids.  And more protection.  He doesn't understand or just can't stay on task long enough to hold onto the stroller when we're walking somewhere, and that goes double if cars are coming.  Today he stood in the visitor lot when we got to therapy, stimming on a car that was coming at him.  He really won't get out of the way.  They're all just things to be studied, enjoyed, and played with. 

So very much of our time is spent putting into practice the techniques we've learned in therapy, at school, and by good old-fashioned trial and error.  Riding out fits, holding the line.  Keeping calm.  Apologizing, confessing, regrouping, and hugging when we've not kept calm.  So much time is spent making sure that we're doing the right thing, going to the right therapies, following the correct advice, communicating the things that are needed to make sure he's successful as he can be that we stop and realize we've missed life.  We've been busied out of enjoying our little guy as a six year old.  Some of this is necessary, but it used to make us feel a bit robbed at times, and still does though not as much.  Take the first day of school.  Most people walk their kids straight to the room.  Not us.  No, routine must be clearly established, boundaries clearly defined.  If I'd walked him to his room the first day, he'd have been completely thrown off the second day.  He remembers, and he will apply that to the next day as well.  Instead of asking "why aren't you walking me in" Ryan's reaction would include some if not all of these: screaming, shaking, crying, hitting himself, hitting the walls, furniture, whatever's close, and just completely dissolving into a mess.  The rest of the day or week could be thrown off.  It might not... there's always the possibility that it might be fine.  And we would live through it, as we do all the time.  But it's not pleasant.

Simple things like dropping him off at Sunday school or any other age-appropriate function became a terror when Ryan hit about five.  No longer a baby, but not able to hang with the big boys by himself, Ryan still needs someone to keep him on task, and protect him from wandering.  By wandering, I mean getting bored, opening the door (which he does easily) and walking along, stimming on this and that.  Wandering for so many autistic children means death.  No, I'm not being overdramatic.  The number one cause of death for these children is drowning, usually as a result of wandering.  Then there's the fact that if I tried to put him in a class younger than his peer group, and I have (not proud of that), there are so many problems.  He's bigger, he's becoming stronger, louder, and if he chose to kinda wrestle with a kid his brother's age like he does his brother, well... that's just dangerous for the other kid.  Then there are the things that trigger overstimming... elevators, spinning things, and doors, while necessary and unavoidable, are just a few that can tank an entire day. Whoever he's with needs to be educated and ready to be super calm no matter what.  And in a classroom setting, for now they're going to need help.  These are just a few of the highlights of the reasons things like school and church are stressful.  Friendly get-togethers, football games, etc. where kids his age run around and play together, mostly unsupervised?  Impossible. Why?  By the time it's time to attend or even schedule these things if they fit in the schedule, I simply have no patience left.  I know, thanks to the internet, that I'm not alone there.  It's sad but true.  So much of my emotional, mental and physical energy goes into staying calm and level for the kids and especially Ryan that even a sideways glance or a misplaced comment can topple the teetering blocks of my emotional tower. 

So what do we do?  We all need relationships to a degree.  The degrees vary from person to person, but the need is there.  Two places we, Lord willing, do not compromise are school and church.  These are things we believe are non-negotioable.  But all of a sudden, it looks like we're going to have to compromise.  It looks too hard to continue.  Maybe even impossible.

"I promised I'd never let anything happen to him." -Marlin
"Well, you can't just never let ANYTHING happen to him!  That'd be awful dull for little harpo (Nemo)." -Dorie 

We simply cannot protect him forever.  We have to find ways to orchestrate things that gives him the opportunity to develop as a person.  Keeping him always with me is, for the present time, not the best option.  We seriously considered homeschool, and would do it in a minute if his needs weren't being met at school.  There are so many people who do this and it works for them and for their children.  So many people (and I used to be one of them, sorry to say) have strong opinions about this, and are more than happy to slap you with them.  Just try sharing with people that you're considering one or the other. 

Somewhat akin to Marlin, I need to protect my boy.  But I don't believe that doing everything for him and completely sheltering him is the answer, but neither is ignoring his issues and insisting that he be treated exactly like everyone else.  Both of these extremes would be severely detrimental.  Whether or not I like it, Ryan has issues that we must address.  He has needs that we must meet.  So that protection has to run alongside training to deal with how to live in the world safely and productively, thus coming a lot closer to making sure he's always going to be as safe and happy as he can be. 

For us, this means there are things we just don't do, if for no other reason than the toll on my stress meter.  I've learned to listen to my stress meter.  When my stress is through the roof, it's harder to be patient.  When I have a hard time being patient, everyone has a hard time being patient.  It's humbling (and when it all blows up in my face, humiliating) that often I can change the climate of the whole thing if I just change me.  Less selfish.  More concerned with what Eric and the kids like and want, less with me.  And what's fair?  "Fair" very seldom exists, and can almost permanently find its place on sin shelf next door to selfish and just down the road from pride.  It's also a hop, skip and a jump from anger and bitterness.  So we are who we are, we do what we do.  We decide what our family is capable of, and to what degree. 

The biggest hurdle of this for us has been letting go of our preconcieved notions, which is a slightly less painful way to say we have to kinda ditch some dreams.  Take football games.  In small town Texas, Friday night is a big deal.  I'd say more people show up to the game than to church on Sunday, but I'm afraid I'd be right.  Football is almost its own religion here.  Football, marching band, cheerleaders, drill team... it's all engrained in our culture.  And I used to be a band director.  I've told you before that I used to be a band director and how important music is to our family.  We wanted to have our kids at every game, in their mini band shirts, playing with the other band directors' kids behind the band stands in the end zone.  For a while I tried to keep up with this, and with just Richie and Ryan it wasn't so rough.  It was interesting, but doable.  Did you notice I said our band sits in the end zone?  Yeah.  No boundaries.  The band often catches field goals.  Makes for a fun time for the big kids, but for me?  No boundaries is dangerous.  Can you imagine a six year old with no fear wandering into the middle of a football game?  Just think about the encounter with a moving motor vehicle today, replace it with a seventeen year old boy with a ton of groceries in him. Let that wash over you for a sec. You'd stay home too, no?

So there are things we should steer clear of without assistance.  No, it's not what I'd prefer, but it's what we need to do.  Trust me.  I've come home from games I should not have attempted with screaming, sweaty Ryan and confused, tired Richie.  We don't go to band rehearsals either.  The thought of Ryan wandering into the band is almost as bad as wandering into the game.  Some of the same issue is why I was terrified of kindergarten.  I was scared of him getting lost.  But going to another self contained class wasn't right for him for sure.  So we had to let go so he could have room to grow.  We thoughtfully prepared him and prayed for him, and finally it was time to let him go.  Maybe it's not so big in the grand scheme of things.  But to us, it's a step toward Ryan being able to enjoy the freedoms we all enjoy.  It's a big step toward hope.  Major encouragement to keep traveling 45 minutes one way to ABA.  Major accomplishment.

I don't want his life to be dull.  To tell the truth, my greatest fear is that his life will be dull.  I don't want him to be stuck with less than life more abundantly.  I love having him with me.  No, it's not always fun to try to help him learn to love things that are important to us, but love is not always a warm feeling, it's something you do. At times I do these things kicking and screaming, I'll grant you.  I've been in a church when one of the ushers came up to a sweet family of parents plus four small ones, telling them that, uh, in case you didn't know we have a nursery and I'd be happy to help you find it.  Genuine helpful intentions.  But for someone wanting their children to experience worship, it was a big red flag.  Far as I know they never returned.  We're one of those families who are blessed to have our children beside us, however noisy, wiggly, squirmy, and fidgety they may be.  the wiggling and squirming is part of the process.  There's even a little disclaimer to those visiting our church, that they may be aware we welcome children to worship.  You'll hear noise, just tune it out.  These kids are important, and they have a place here. Ah.  Lovely.

So far, we have managed to let go of the old and bring in the new.  Sometimes the things that we think will surely drive us mad and don't make sense at first winds up making sense... and at times, not only making sense but being the biggest blessing in the world.  The things we held dear become the impossible, and we're forced to reinvent, rethink, and restructure.  And if we are not mixing strong and courageous with patience and thought (as Nanny would have said, "go off half-cocked"), we can make horrible messes.   We are so proud of this week of kindergarten for our boy, and so grateful for the opportunities we have been given to further Ryan's education in a way that meets his needs.  We're learning more every day about not worrying about what other people think about what we do and don't do, and more and more hold fast to the promises of God and what we know we should do.  We're learning to remember that we are human and fallen, therefore we will be tired and weary.  And tired and weary is okay.  But we absolutely must remember that others are the same... tired, world-worn, and weary.  We have to keep trying, keep overcoming the fear and helping Ryan take very calculated steps to having life more abundant. 

We have had so many prayers for our family answered in so many ways just this summer... heck, just last week... that I have to be thankful.  We have an amazing life!  I watch my beautiful Richie playing in his sweet, brilliant way, Maelynn swinging her little hips from side to side, skirt flipping around, as she tries her best to dance and sing to Elmo's Song.  I see my handsome Ryan's mouth form the word "Mommy" and stim as he sees me pull up... and I see the sparkle in his eye when he sees it's me... and I know what I have to do. There is so much, and it's all so complex in so many ways I can't begin to understand or explain.  But it all comes down to one piece of advice from Ryan's favorite cartoon fish, Dory...

Just keep swimming. 

Just keep swimming. 

We have to keep swimming, trusting that when we need to rest, we can bring our weary, scream-roasted nerves to Him and He'll help us start over the next day.  I can't promise that it'll be easy, but I can promise that we will get up tomorrow and keep swimming. 

Ah, Providence...

Before I dig into this precious account of the time we spent getting ready for school yesterday and this year, I have to say I'm amazed, again, at God's providence.  Completely floored, overwhelmed, and in utter awe of God's timing, mercies, you name it.  He knows us, our needs, better than we could have imagined.  This comes from the heart of a mother who still puts a baby gate up to keep her son in his room at night, keeps the monitor on, and has agonized over whether or not to homeschool, try kindergarten, try something else... whatever else... to make sure Ryan gets what he needs to be who he should be.

About mid-week last week, I get an email from the church we're now attending.  They needed to know something... can't remember what... to make sure they had the correct room setup for beginning CE (Christian Education... like Sunday school) this past Sunday. We called about visiting earlier this summer.  By "called about visiting" I mean we called with intent to talk to someone who would know whether or not we'd be accepted into the church with all our challenges.  Let's face it... when one person in the family has autism, it seems the rest of the family does too, at least when all the kids are young enough that we all do things together.  We called not to be ugly, not to be snarky, but to truly ask if this might be a place we'd be able to grow... and Ryan would be able to become part, as well as Richie and Maelynn.  We want our family to be part of this kind of church for several reasons, there aren't a ton of them in our area, and we felt kinda drawn to this one.  After we've made the decision to jump in and start going there, we find out that Ryan's CE teachers are trained in special education and work daily with autistic kids at one of the school districts nearby.  We did not know this in the beginning!!!   The decision to attend this church was made on theology, and to be perfectly honest, personal preference.  It turned out to be an example of God's providence.

So the day before the first day of school was almost as big of a "new stuff" day as school, and although there was some screaming that I heard from our adult CE class, the teachers are pros.  He was a happy little dude when we picked him up for the service.  He participated in coloring, story, everything.  He did get a bit antsy toward the end, so one of the teachers took him with them to run a quick errand to another room.  No biggie.  He did pretty well through the service.  We sit in the back with several other families with small kids, and all of us overlook the wiggles and noise.  It's just lovely. 

After church, we got a bite to eat and needed a trip to Target.  Just a quick one.  Ryan was not amused, but we made it out without any major screaming fits.  I love Target, but my son does not.  That's probably better for our budget, anyway!  By the time we were through the checkout, Ryan had begun to scream for his new teacher.  Cool!  He hadn't met her, but I'd talked her up a bit.  Okay, I hawked her like a carney.  But he was asking for her by name, knowing we were on our way to meet her and see the classroom.  Big step!

We drove the 45 minutes home.  Since we were still doing well on time, I decided to stop and pick up his teacher for the last three years' thank you gift, since (in true Crystal fashion) I had forgotten it.  And it was late.  Yeah, that's how I roll.  Good thing she loves us. 

By the time we made it to meet the teacher, the crowd was thinning and Ryan was able to check out the classroom.  It was very organized, colorful but not obnoxiously so, and he even got to see his fellow ASD kiddo, M, who has been in PPCD with him for a couple of years.  Not that they spoke to each other, but y'know.  They knew.  After completing the checklist of things to do, unloading his school supplies, finding his desk, locating his cubby, and visiting with his new teacher and one of our teacher friends we were on our way home.  I was thinking we had a pretty good handle on this, but was still nervous.  He fiddled with the pencil sharpener like crazy.  I could just see his poor teacher scraping him off the ceiling when he was told to sit down. 

Trying to be positive, I kinda barreled through the evening, just getting things together and making sure things would be as streamlined as they could.  The next morning, he did eat, and no meltdowns.  Yay!  Then it was time to go.  We'd left his backpack at school as requested, but he still needed his lunch.  So he and his Thomas-shaped lunchbox trotted out to the van with the littles behind him.  As we got in, Eric snapped a picture with his phone.  Yeah, I was trying so hard to not think about it all that I didn't get any pictures.  Ugh. Bad Mommy! 

Once in the van, I promised he could listen to his current favorite song.  If you know us in real life you'll chuckle... it's the Cadets CD from this summer, track #6, Strike Up the Band.  It has the most awesome roll off... anyway, we're rocking to "the drums" as Ryan calls it, over and over, and something about it all hits.  And I'm crying.  Maybe listening to drum corps wasn't the brightest idea for the ex-band director mama who misses teaching marching band.  Ah well, he loves it!

I know it's not unusual for mothers to cry the first day of kindergarten.  But Ryan has been in PPCD for three years so I'm not a rookie.  I had to leave my baby for the full day when he was three.  It's in the same building, on the same hall.  We have friends who are teachers on that hall and know Ryan.  Four or five doors down apparently incites tears in me!  We drove through the traffic tree... completely empty except for us... and thankfully it didn't hit me until later that most people walk their kids in for the first day. Not us.  Routine is something to be adhered to from day one. It's best for him, and by extension, everyone else.  The best part about it that particular morning was that no one but an aid was around to see me blubbering. 

When it was our turn for the aid to open the van door and help Ryan to the school, the waterworks got worse.  He was completely comfortable and seemed happy and calm!  I, on the other hand, at 33 years of age, was a wreck.  The aid said "give Mommy a hug" and he leaned in and let me hug him in his little Ryan way.  I tried to tell him through the tears to be a good boy, mind his teacher, all that mess.  He stood up from that hug, looked me IN THE EYE, and did something I'll never forget.

He threw his arms around my neck and gave me the biggest Ryan hug ever. 

Throughout the day, I heard from a couple of different people (including his PPCD teacher, who's like a second mother for him) who had noticed Ryan, and they all said the same thing.  He was having a great day!

Of all the therapies I worry that we don't/can't provide, one thing we have for our super little man is love.  Not just ours, but the people who are in the school here really do care about our precious one.  He made it all day, not one phone call, and I had secretly expected to have to pick him up way early.

Just like so many things of late, this doesn't tie up in a pretty little bow.  There will be over 170 more days of school to navigate.  But for this day, we celebrated.  We ordered a pizza (which we hardly ever do), and we cried more tears of joy and pride and gratitude, still reeling in the mercies, blessings, and providence of God.  No, it will not always tie up in a neat bow... but I choose to hold fast to the knowledge that God, having made even our little family for His own glory, knows how to take care of us.  That choice has never let me down, and I believe it never will!  No, I cannot explain it all.  I cannot fully answer every "why" and "what if", I cannot explain why bad things happen... why autism happens.  But you ask me how I know He lives?  He lives within my heart.  He chisels the hard places from my heart, smooths the rough spots, toughens the weak ones.  He gave me three beautiful children, and He gave me the moment yesterday afternoon when a sweaty, backpack-clad six year old came out with his aid, climbed into the van and uttered the most precious words I'd heard in months...
"Hi Mommy!  Do you like the school every day?"  *stim, stim* (Ryan for "I LOVE school!)
All spoken while grinning ear to ear. 
THANKS BE TO GOD!!!

In Christ Alone
by Stuart Townsend and Keith Getty

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I stand.

Burgers, anyone?

Ryan, during breakfast, in his precious robotic voice: "I want a burger." 

Mommy: "Honey, you have to eat your jelly toast." 

Ryan: "First jelly toast, then burger." He tries this a few times to no avail. 

Mommy: "No, sweetie.  First toast, then get dressed, then Thomas." 

Ryan: "First toast then BURGEEEEERRRRRR!!!" *Scream, scream," BURGEEERRRR!"

Thus began the morning.  He did relent and eat his toast.  After breakfast, we were all in the living room hangin' with Thomas, James, Percy, Edward... you get it. 

Ryan:  "I want a burger."

Mommy:  "We can have a burger for dinner tonight, ok?"

Ryan: "I want burger!"

Mommy: "We can have a burger for dinner tonight, sweetie.  I know Daddy will love that."

 It wasn't on the menu... the prepared-a-week-in-advance, squeeze every meal we can out of one pound of cheap hamburger menu I'd prepared.  But he wanted it BAD, and I have a couple extra pounds in the freezer.  And this time, he was asking nicely. back to your regularly scheduled whatever this is...

Ryan: "Ryan caahave burger for dinner."

Mommy: "Yes, baby.  Ryan can have a burger for dinner."

Ryan: "I WANT BURGER!"

This is the first meltdown of the day.  I have no idea if he understands what I'm saying and just wants it now, or if he is just struggling to comprehend, or a combination.  Either way, the screaming, kicking, hitting the furniture has begun.  Fast forward a bit, and it's lunchtime.

Mommy: "Boys, come to the table!  Time to eat your sandwiches!" 

The boys, after a couple reminders, come padding, gangling, hopping, yet meandering into the kitchen.

Ryan, upon seeing his dinosaur shaped grilled cheese: "I want burger!"

Mommy:  "I know, sweetie.  I don't have one ready now.  We'll have burgers for dinner."

Ryan screamed and thrashed around in his chair, beat the table, beat his chest, and it didn't matter what I said.  He had to go to the living room and calm down at my request.  When he came back, he ate half of his sandwich and asked to go take his nap.  Rare, but when you've been exerting that much energy and only God knows how much mental/emotional energy, you're tapped.  He and brother go to their room to take their naps.  In their room...

Mommy: Take off your glasses and shoes and climb into bed, Ryan.  Kiss Richie, already in bed.

Ryan: "After naps you can have the iPad." 

Mommy: "Yes, baby.  Absolutely.  You can have the iPad after naps.  I love you both... get some rest, little buddies." 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The rest of the afternoon was much the same.  Mostly about burgers, some little fits centering around toys, giving up iPad when the timer went off, sister gettin' all up in his business.  But he was his parents' child, and totally wanted that burger.  He even goes as far as to put his hand on my shoulder and say "That's a good ask!"  when he asks for something, thinking (I think) that his reminder will surely snap me back into my mind, giving him what he requested immediately. 

Maybe not.

Heavy on the "not."  But it's so cute.  I love it.  The screaming, physical outbursts, and just plain demanding isn't cute.  Far from it.  All day long we watch Ryan so disturbed over something we've simply said "later" about, or something he just can't have right now.  The other day's two and a half hour meltdown over milk, today's burger mess... they frustrate me beyond compare.  What do I do, just give in to calm him down?!   I know he's smart.  I know he'll see a hole in the fence and exploit it. 

I can't be afraid of his fits.  I can't be afraid of him.  I can't get mad.  I can't show frustration.  When I do, it gets worse.  His fear feeds on mine, and it spirals out of control.  So I swallow, go on auto, and keep repeating things like "first this, then this" and "you're ok" and "if no this then no this".  But I get so sick of the sound of my voice.  There are times I think if I hear myself say the same thing one more time I'm gonna puke, pass out, tear out my hair, or all three.  Run screaming through the neighborhood, maybe?  Go back to bed, nope.  I've done that before when Eric got home, though... just long enough to regroup and find my brain so I can cook. 

Watching your child suffer at all is awful.  All of us as parents will, unfortunately, see some kind of suffering in our children's lives.  Remember that horrible face your child makes as you help the nurse hold him/her to give a shot?  That "what the heck is going on and why aren't you doing anything" look?  There's a bit of that in every meltdown.  You can tell that part of him wonders why I'm not fixing it.  But I know from experience that all I can do is wait and keep him safe.  He's not a bad kid.  He is a good kid with autism. 

Funny, saying that he has autism... classic... severe... autism still rings in my ears and makes my stomach ache.  Still.  I try not to dwell on what ifs, but how can you not think about it every once in a while?  Here we are sending this precious being into a classroom with about 25 other kids... one teacher (who we really believe to be the best fit possible)... blllaaaah.  I do this every day.  I do it because he's my sweet Ryan... he's my first baby.  He's the one I talked to, Eric read stories to before he was born.  He's the one who was tucked snugly in my tummy as I stood in his bedroom in our house in Fort Worth, gazing into the empty crib and trying to wrap my mind around parenthood. 

But he's also the one who wasn't talking at 2, then 2 1/2, then 3... the one who couldn't make eye contact such a short time ago... the one who still watches Elmo and loves every minute... the one who must complete every task he starts... the one who perseverates with the persistency of super glue.

I used to pray that God would take this away.  Every day, I prayed it wouldn't be autism.  I begged.  I pleaded.  Then came the day when we heard it in the meeting at school and both of us cried, and that was just "it's probably autism".  The diagnositican was (and still is) a good friend of ours, and I can see her face and hear the words to this day.  Then there was still a chance, I felt... a smidge of a chance there was something missed, something added that shouldn't have been, and it might be wrong.  This year I just knew when he was re-evaluated he'd have improved so much there would be a change, and there was. 

This time they were sure.  Severely autistic.

So what do you do with this?  Some have watched and think that it can't be as hard as we say... but it is.  We love our kids, all of them.  Any issues any of them have we're in for the long haul.  The everyday gets rough.  It gets hard.  It drags every last ounce of energy and sucks the life out of me at times.  The single thing that keeps our hearts plugging along is our faith.  "But God didn't take away autism," you might think.  No, He didn't.  Could He? Absolutely.  But I choose to believe every day when I wake up that He knows best.  I will be faithful to love my boy.  I will do my best to do what I can and push the limits of what I think I can do.  On the days I can't... on the days I don't have it, nothing makes sense, and it all seems too hard, and I don't have the heart to even look up, He carries me.  He holds me. 

Life doesn't wrap up in a nice, neat little bow all the time.  It's not fair.  It's not easy.  But it is worth it.  In the middle of the autism mess, we're given things to make us smile.  My kids laughing... the rare moments they're playing together, or even alongside... are among the most amazing things in the world.  I'm scared of a lot of things for my Ryan.  Among the life-altering lessons I've learned while Ryan's blessed our lives... humility.  Too often it's my pride... my way of thinking, predisposed "what I deserve" or "the way it should be"... that trip me.  Leave me in tears, wondering how I'm going to keep doing this.  Yes, somewhere between my kids and scripture I've seen more of how multi-faceted and sneaky pride is, and how it wrecks things without me even knowing it. 

So as I'm cleaning my potty training three year old's puddles from the carpet as Ryan is asking over and over and over and over for milk/iPad/black cookies/whatever and Mae is trying to crawl up my back, I'm gonna try and remember... again... that it's these things that make up life.  That I make mistakes and am difficult at times, too, even though my husband doesn't complain.  But really, what matters is hanging with each other.  Enjoying what we can, working through the rest.  It's all about learning to love each other more than ourselves.  To love as Christ loves us.

By the way... I decided, after a day like that, to go ahead and have burgers when I was going to serve leftovers.  When Ryan saw his burger, guess what?  He refused it and started screaming for the VSmile Thomas game.  Never did eat, and it's still on the table.    No, he didn't play VSmile... and yes, it was noisy.  Oh well. 

Loving A Person


By Sara Groves and Gordon Kennedy


Loving a person just the way they are, it's no small thing
It takes some time to see things through
Sometimes things change, sometimes we're waiting
We need grace either way

Hold on to me
I'll hold on to you
Let's find out the beauty of seeing things through

There's a lot of pain in reaching out and trying
It's a vulnerable place to be
Love and pride can't occupy the same spaces baby
Only one makes you free

Hold on to me
I'll hold on to you
Let's find out the beauty of seeing things through

If we go looking for offense
We're going to find it
If we go looking for real love

We're going to find it