Tuesday, September 20, 2011

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?


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.

Saturday, September 17, 2011

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. 

Saturday, September 3, 2011

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. 


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.

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