Saturday, July 30, 2011

Thirty Minutes

So much has been going on lately, it's hard to pin down a topic.  So much goes on every day that each day in itself is a challenge of where we lean for our strength.  But for now, the kids are asleep, the house is somewhat clean and picked up (shh... don't tell anyone... it'll change), and I look over at my best friend.  He's working on a percussion part for a school in the area, drumming with his fingers on the laptop in between glances to the score, back to the computer, score again.  

And now I know.

Before we were special needs parents, we were Eric and Crystal.  We were both teaching band, we graduated with the same degree.  And the funny thing is, before we met, we saw each other several times.  He was in the audience at a concert the Hardin-Simmons University Concert Band gave at the Texas Music Educators' Associaton convention when I was in college, in the band.  He remembers it because the march was super-awesome... yep, it really was.  When other music folks give you a standing ovation... yeah, you pretty much ripped up that sucker!  I loved band... band was my first love.  From the time my Mom took me to a football game at the University of Oklahoma I've loved band.  It rained the whole game, but when halftime hit and I heard this amazing sound, I came out from under the blanket.  I fell in love for the first time as a five year old when I heard the Pride of Oklahoma. 

I loved teaching band dearly.  I loved the kids, and I gotta tell ya, old band directors are the coolest people ever.  I used to love listening (and still would, given the chance) to the seasoned pros talk about the good ol' days... and the stories about hilarious things that happened to sleepy, brain-fried band directors (remember the chain, Mr. Marsh?).  That's actually why I don't do it anymore.  I loved it too much.  If I were a band director right now, I just don't see how that would work.  But that's another blog post.  No, I do not think it's horrible for mothers to work... its just not what God wanted for me. 

So years later, all the beginners I had are now in college, my name has long been off the TMEA, ATSSB, and TBA rolls.  Heck, I can only think of a few people who would still think of me as a possibility to teach a sectional or a private lesson.  Time marches on, and in the battle of autism, I begin to think the ol' tiger lady who loved a tight-run rehearsal is just gone.  Kinda vanished, and mostly it's okay.  Honestly, I usually don't notice until concerts, or the first football game of the season... I always have a short, private cry in the van before I get out to go in the stadium.  It's obvious that I'm doing what I'm supposed to be doing.  But sometimes I just miss the whole thing so much. 

I know, what does this have to do with the price of bubblegum in Beijing? 

We have missed several of the usual band/music conventions for several reasons.  Having babies, money, back surgery... all good reasons.  He'd go, but I didn't.  The week after Maelynn was born, Eric went to facilitate a clinic at TMEA, and my Mom stayed with me and the kiddos.  As he walked out the door, I thought I was going to die.  Not at myself staying home... just not having him around.  Last summer I was taking care of Nanny, so TBA didn't happen.  Last TMEA, Eric had just had back surgery... no convention.  But this year, we decided that Ryan had to go to Morgan's Wonderland.  So we would go to TBA. 

The whole time we were planning, and even when we got there, I thought I had to be out of my ever-lovin' gourd.  When we're there, we walk everywhere.  It's in downtown San Antonio, and the convention is huge... and do you have any idea how many elevators there are?!?!  The first day, it took me so long to get over the fear of what might happen, how this was going to work, that it was nearly noon before I got dressed.  I was terrified of my worlds meeting.  Not an hour later, I ran into (obviously divinely) my dear Mr. Marsh and Elaine.  Ah, wonderful! Big hugs and love, then not ten minutes later, in the middle of the convention center, the biggest meltdown ever. 


Have you ever heard a six-year-old's scream in an open yet confined area?  Eric had to get registered.  He went with the two littles (who were being fabulous, by the way... thank you Lord) to get us both registered, and I stayed with Ryan, trying every trick I had to calm him.  No dice.  We passed at least five elevators on the way to the spot where we stood... well, wiggled, squirmed, screamed, yelled, and cried.  Soon as Eric got done, we booked it out of the convention center.  I wanted to curl up and cry, but just as usual, life didn't afford the opportunity.  Ryan asked to go to the mall.  Ok, buddy.  Here we go. 

At the mall (whch was across the street), we went to the Disney store where Ryan, Richie, and Maelynn all found something to spend some birthday money on.  Minor fusses, but nothing too awful.  We had planned to go to a concert the Madison Scouts were giving, but considering the elevator fit in the convention center, nope. 


The rest of the trip was better.  I scraped what was left of my resolve and roll-with-it and we swam, wrestled in the hotel room, went to Rainforest Cafe, ate on the Riverwalk, and yes... we rode elevators.  Not for fun, mind you... we rode them to use them.  We walked by firmly and purposefully, and most of the time, he'd ask once and that was it.  He asked incessantly about the "blue elevator"... the glass elevator to the river level in the Hyatt.  He even went with his Daddy and I and the littles onto the convention floor to see the exhibits, and lasted a rather long time before we had filled our dance card and wound up in full-scale meltdown.  But hey, that one was my fault.  I pushed. 

While all this was going on, one day, Eric put aside his work and stayed with the boys while Mae and I went to the spouses' luncheon.  There's always a fancy meal, door prizes, and a fashion show.  There's always music provided by Ditto and the Dots, though ditto lost his dots.  Eric and I found it hilarious that there was a clinic that was entitled "the day the dots died"!  But just like I did before autism, I went and met Elaine and Anita, Melanie joined us later.  Extra treat, my college band director's wife, Mrs. Hanna, sat with us!  We giggled at the fashion show, Mae got to go to a real princess tea party (well, I called it that).  After the luncheon, I got more hugs and encouragement from my dear "fairy godmother", Elaine, and we all parted ways. 

Back at the hotel that afternoon, I got brave.  I slathered sunscreen on the kids and took them swimming by myself.  Life jacket-clad, our crew toddled, giggled, and stimmed our way down to the pool.  Later, I learned that Eric ran into a band director who had just had a son diagnosed... another who has had children on the spectrum for a long time.  The next day, as we walked away from dinner with one of my best friends Tina (who just happens to be a fabulous band director), I carried with me even more encouragement, support, and love.  More reaffirmation, wind at my back, urging me to go on.  Keep going. 

After we left, we walked out of the mall, deciding what to do next.  About a minute later, we ran into one of the guys from Row Loff Productions, a company that writes a lot of awesome percussion stuff.  He was coming back with a drumstick and some music he'd left behind at the clinic earlier in the afternooon. He and Eric traded thanks for the cool music they write, and then as Eric ran into someone else, I visited with him.  One of the guys that works for them has a son who was just diagnosed with Asperger's.  He was so amazingly interested in Ryan, and genuinely reassuring!  Through the green paper crown from Medieval Times given to him at the exhibits, and of course his convention badge (just like daddy)... outfit picked by daddy, accessories picked by Ryan FOR THE FIRST TIME... this man noticed Ryan looking at his drumstick.  He asked if it'd be okay if he had it, and of course I thought it was a wonderful idea.  Just a few feet later, we ran into one of my friends form the band days, and Ryan even said hi to him! 

After we'd had our fun chatting to these folks, I turned to Eric and said, "Let's go ride the blue elevator."   We walked halfway across downtown so that Ryan could ride his favorite elevator, Richie could walk across a bridge over the riverwalk, and we just meandered on the way back.  We grabbed some "black cookie ice cream" in the Hyatt, and as we walked back to the hotel to swim, it hit me. 

Convention is an awesome place for Ryan to learn hi, hello, how are you.  It's a fabulous way for us to have a break from the norm.  But while I thought we were just going because Eric needed to, Morgan's Wonderland would be great, and at least we'd see daddy at night if we were there, there was so much more.

I learned that Ryan is crazy about carousels, and can recognize when we're getting close to Morgan's Wonderland on I-35 and start screaming for them.  Amazed, thankful, and frustrated... all at the same time! 

I witnessed the ASD community within the band community, and I pray that we can help each other stay strong.

I received precious, humbling amounts of encouragement and love and acceptance... and the park was just the beginning.

I remembered, walking down the streets of San Antonio, the loneliness of my singleness, and how I wished and prayed for Eric before I knew him. 

I reminisced of the days when we were newly together, newly married, enjoying the Riverwalk at convention.  The days when we spent our days at clinics together, ran around with our friends, and searched for, talked about, complained about, and generally mulled over contest music and the whole process.  Sweet, precious memories for which I am forever grateful.

I saw the gifts of Ryan, Richie, and Maelynn as they charmed others, enjoyed the pool, and got on each other's nerves just like regular siblings. 

I saw and remembered the importance of remembering how to be Eric and Crystal... and that although we've changed, we're still we.  And I'm so glad. 

I saw that it's okay to remember me how I was, as long as I don't forget who I am.

On the way home, I remembered something Shelby, in Steel Magnoias, said... "I'd rather have thirty minutes of wonderful than a lifetime of nothing special."  So true.

Each day, I wake up and do mostly the same thing.  Too often I wake up to screaming meltdowns.  I love my children dearly, I am grateful beyond words for them.  But autism beats me up.  So often I just want to shut the curtains, create a bubble, block out the hurt.  Stay in and not take the risk.  So often I don't know if I can handle another day of constant, rapid-fire demands for this and that.  Another day of screaming, when he can't have it (whatever it is), until he's red all over and a huge vein pops out on his neck.  Another day of wailing as he beats his chest, legs, and head.  Another day of feeling helpless to help him.  Clueless to rescue him.  Desperate to understand. 

Then I remember another something important...
What He desires for me is that I see “Him walking on the sea” with no shore, no success, nor goal in sight, but simply having the absolute certainty that everything is all right because I see “Him walking on the sea” (Mark 6:49). It is the process, not the outcome, that is glorifying to God. ~ Oswald Chambers

My dear friend Darcy had this as her status the other day.  It is in the every day.  It's in the trenches of the fits, potty training, stretched-to-breaking of every day that I need Jesus.  THAT is where He wants me to meet Him.  That is where He becomes real... to me, to everyone.  He wants me to reach out and do the things I'm called to, even if they're scary. What better way to wake up every day than knowing your Saviour has already walked through your day and knows every turn... and He stands there, hand outstretched, waiting for me to join. It'll be okay.  He's there, and He's safe, and He'll carry you if you can't do it... and guess what?  You can't.  But that's okay.   

I pray that we'll all reach out, take His hand, and dig in. 

You never know when you'll be missing your thirty minutes if you let go.

My tired, sweet, beautiful family in front of the Alamo. 

Friday, July 29, 2011

Heavenly Leveling

Back again... finally.  We had a great week last week, full of things to do, full of opportunities.  it was a wonderful week.  The funny thing is it was so great I can't just spill it all in one post.  So I'll start from the beginning... I hear it's a very good place to start. 

We began our journey to San Antonio for the Texas Bandmasters' Association convention, held every summer.  For the past couple of years something has come up and we've been forced to stay home.  This time, we were kinda determined to go.  We learned of a place called Morgan's Wonderland and decided that our family would love that. 

We were so right!

This is at the base of the statue (below).  I immediately knew this was going to be a very good day.

We started to play pretty much immediately when we walked in.  All the paths on all the playground equipment- which in itself is amazing- are more than wide enough for a wheelchair, and each play area is accessible.  Even the slides are friendly... they are rollers instead of just a solid surface, so even without the ability to propel yourself you can slide right down.  There are regular slides, too.  Everything is sturdy enough for adults, too.  I'm not a "little girl" and I was able to slide, run around and play just like Ryan.  Well, something like that anyway... I lack his energy!

There are so many neat sensory things, like the water play area, that kids with or without a sensory "thing" can enjoy. All our kids thought the whole park was cool... but a close second to the trains was the water play area.  I cannot begin to describe how cool it was.  Just glance a little further north on the page and check out Ryan gettin' his stim on!

Goin' around again on the train!
Then there are the rides.  Oh, the sweet people who work there!  The only place I've been where the help is such a part of the experience is Disney World.  Not kidding.  All the staff were welcoming and warm, some with a special need themselves in some way or another.  On the train that goes around the park, we rode three times the first time, and two or three more at the end of the day.  Again, the train is even wheelchair accesible.  This doesn't apply to us, but there are so many who need it.  On the carousel (again, wheelchair friendly) we rode twice around... only stopped at two because mommy doesn't do round and round.  As we got off, one of the staff members needed to go inside the carousel to do something.  Before I could grab him, Ryan followed him!!!  The man left outside the carousel just laughed and said in a voice loud enough to hear, "You've got one behind you" like it happens all the time.  No big deal.  No "hey lady, control your kid." Just a little warning so he didn't back over my boy.  After a high five from Ryan, we left the carousel and continued our stay. 

I have to say, any time I encounter something done for special needs kids, or just autism, or it's just so obvious that people get it, I choke up.  Random tears of relieved joy rolled down my face for at least the first hour I watched Ryan, Richie, and Maelynn run around and lead the way.  Even ground.  No "you and you, but not you".  The biggest thing that got me... Morgan, who the park was inspired by... is pictured at the front of the park.  Below her picture is all about her.  Things she likes to do, eat, see, and what she enjoys, what kiind of person she is.  Never once does it mention what her "special need" is.  Never once are you confronted with a label.  The only label that exists is simply "hi, I'm Crystal, and I like...." 

For three glorious hours, I didn't have to say the word "autism".  No explaining, no apologizing, and even during a meltdown (the only one at the park), no stares or comments.  Just the five of us, playing and being together. 

The boys were boys...

Mae was Mae... ever the busy girl. 

As we poured ourselves into the front seats of the van after cajoling, buckling, issuing water and snacks, diapey changes and explanations of what's next, we looked at each other and agreed we'll be back.  Not sure when, but we'll be back.  After all, how can you stay away from a place that lets kids, whose bodies have robbed them of so many of the joys of physical child's play, swing and slide?  Other than our own experience, one that will stay in my heart is the image of a mother sliding with her teenage son.  He needed her assistance, and she was more than elated to oblige.  As they slid down the roller-slide, laughing and smiling with an unadulterated joy I cannot explain, I made up my mind that I had to do all I could to share this place.  This fabulous, amazing, yet so simple... level ground.  Absolutely heavenly. 

Taking Flight
(on the plaque below the statue)

"Taking Flight" dramatically symbolizes what Morgan's Wonderland stands for- to inspire those with special needs to soar beyond their physical or cognitive challenges and reach heights thought to be unattainable. Just as a butterfly magically emerges from its cocoon, unfurls its wings and takes flight, this unique park is dedicated to encouraging each individual to dare to reach beyond their limitations and reach the heights of their dreams.
We are so thankful to the founders, dreamers, for Morgan, for her wonderland.  But we're even more thankful to be blessed with the three most amazing children I've ever met... Ryan, Richie, and Maelynn... and all their dreams, hopes, and challenges.

Thanks be to God, the giver of all!

Thursday, July 21, 2011


Ever have one of those days?  One of those days where you feel like your limbs are moving through peanut butter?  One of those times when the things you do manage to do seem to be amazingly messed up?  The worst part is I have little excuse.  Okay, I have a little excuse, but it's not anything huge.

On these days the funny thing is, I don't realize how different our lives really are.  I get tired and start to beat up on myself a bit for the dishes in the sink, the cans of paint by the door, the border that needs to come down in the kitchen.  Then I hear a random scream and realize, "oh yeah..." and it all comes together.  Thankfully, I have a husband who is willing to learn this aspect of loving his wife.  I won't lie.  He does make mistakes.  We both do.  We are, at times, insensitive to each other, selfish, and just plain grumpy.  But that's where grace and mercy come in, and oh do we ever need that.

Yesterday was a fun day, and looking back, it was rather busy.  A friend needed an interview with a special needs mom, so I got to do that and really enjoyed it.  For one, I got to spend time in my home with someone who gets it.  That's always valuable. Equally valuable is long phone conversations with good friends just to catch up... friends who trust that you're doing the best you can with what you have... yeah, that's amazing too.

Anyway, the questions were interesting.  The ones that stick out the most are something about how your child's special need has challenged your relationships (family, friends, marriage, etc.).  Wow.  Talk about shoving Niagara Falls through a drinking straw.  As I struggled to answer without giving her writer's cramp (yes, she used this low-tech papery blog thing called a "notebook" and this magical stick called a "pen"), I knew that there was too much.  Did my best, though.  But not all of it would fit.  It's too huge. 

What has Autism done to challenge us? 

Autism has made us more aware and thankful than we could ever have imagined for every milestone in all our kids.  Once you've had a child who didn't reach them, they are celebrated with the fervor of, say, winning the "Piston Cup" or making it to "P Sherman 42 Wallaby Way Sydney".  For those non-Pixar watchers, with winning the Stanley Cup or the Super Bowl.  We get excited. 

Autism has made us hurt more than we wanted to.  The pain of realizing your child has challenges that you cannot immediately change... it's not a scrape on the knee, a cold, or a stomach bug that will pass.  It's in your face and demanding all the time.  It does not take time off because you've been doing so great.  It alters your thinking about everything.  It forces you to plan EVERYTHING down to the letter.  A family trip to the mall?  To church?  To the park?  Every last blasted step must be thought out.  We are picture-scheduled and social-storied, this-then-that-ed to the nth degree. It stings you in places you didn't know anything could reach, and even in places you didn't know you had.  There are days and times when it brings you to your knees in ways you never thought possible. 
Autism magnifies the meanness and kindness of people.  We have seen people go out of their way to connect with Ryan, and we see all the time people go out of their way to avoid him and us.  The most glaring example is the difference between going out with just the two littles and with Ryan.  Go out with just Mae and Richie, and you get "oh, are they twins?" and "oh, what beautiful children!" and "oh, you have your hands full".  I usually add "you should see me when I have their six year old brother, too."  Go out with Ryan?  Few people look us in the eye.  Fewer still speak.  I've even heard comments like, when I told someone I was pregnant with Maelynn, "oh, I thought surely you'd had your tubes tied!"  From afraid to speak to unwanted advice to angry comments at his behavior, there is a marked difference in how we're treated.  Funny thing is, I feel guilty when it feels normal.  Almost like I'm lying, you know? 

Autism searches your marriage for weak spots and exploits them.  If you're not good, effective communicators, if you haven't learned to forgive (and that forgiveness means you give up your right to punish the person who hurt you), if you're not playing as a team... all those things are magnified.  They were problems before, but they'll really be problems now.  Having children period does this, but having special needs children will go a few steps further.  Our time together is sacred.  Once the kids go to bed, once we have our chores done, we have big kid time.  Ice cream and a non-animated show, video games, air hockey on the iPad, or a movie, something that is light and fun at least once a week if we can swing it.  Kids are in bed, we know they're safe, and we chill and take time to be Eric and Crystal, those people who only dated a week and a half before they got engaged, and not Daddy and Mommy.  But I'd lie if I said we never argue, never get mad and cranky and say things we wish we hadn't.  Pressure is too much at times, and we're fallen humans. 

Autism drives you to or from your faith.  If you are angry at God for the special need your child has, tell Him.  He can take it... He's GOD for cryin' out loud.  He hears and knows your thoughts anyway, so you might as well spill it.  Work through it.  For me, there's no way to deal without knowing someone else is in charge.  I still do my best, I still advocate for my son, but at the end of a day of screaming meltdowns and utter frustration, it's nice to know you can let go of the rope, because you know He's there to catch you.  It's also nice to know there's a purpose and plan for this (Jeremiah 29:11). Obviously (I hope), autism has driven us to seek the Lord more fervently than ever.

Autism makes you let go of things that don't... and really never did... matter.  My house is not uber-tidy.  The floor of my van is covered in an odd assortment of old french fries, cracker crumbs, and cheerios, there are picture schedule icons everywhere, there are toys all over the place, but I do my best.  The sheets are clean, the diapers are clean, the kids are fed.  On the days when I can't even say that, oh well.  See above.  Today I needed to be painting, making a packing list, mopping, or doing any number of things, but I like to think that the time I spent in the floor with the "bears" (bear counters), books, and watching T-O-Y three (Ryan's name for Toy Story 3) are going to be more remembered by the kids. Yes, I do clean house, but neat freak?  Oh no. And it's certainly not a showplace... but it is happy and comfortable.

Autism forces you to let go of some dreams you didn't even realize were dreams to make room for your child's safety and well-being.  And yours.  Situations you used to enjoy are just too frustrating.  Small talk is almost unbearable (can't lie... I was never good at that anyway). Things you once took for granted are now in the "yeah right" dream category. 

Autism makes you grateful for so many things you never thought about before.  It makes you angry about things you never knew existed.  It brings words like segregation, integration, inclusion, separation, isolation, and frustration to new levels of understanding.  It makes you more sensitive and tougher at the same time.  It brings to light so many ways people need to be loved, and the fact that almost none of them are exactly the same.  It makes the everyday so flustering, but at the same time, on the rare occasions something goes completely smoothly, it's so much sweeter. 

It has taught us that standing in the midst of a time when you have no idea what is going to happen next, where the patience for the rest of the fit will come from, or what in the world you're going to do... when you stand there, tears pouring, heart-sick, worn, weary, meltdown-weathered and exhausted and say with the shred of energy you have left that there is a reason... He is in charge, He has not left us, His mercies are new every morning, and we will rise to greet tomorrow with joy, for it is a day He has made... when you reach through the pain and extend a hand and heart to others in the same situation... when we just get up and do it all again and again... that is worship.  We want to live it, not just survive it.

We are there right now.  A major time of transition.  No idea how it will go.  We have a pretty good idea of how to prepare, and that consists of making sure the picture schedule has been in play, he's used to getting up at the hour he needs to go to school, we've worked on sight words, counting, sorting, waiting, sharing, asking for what we want, going to the bathroom without following a timer, everything we can think of, and now we have to stay the course, and trust.  There are moments when I think he's gonna blow the top off of all the changes, and there are moments I think we've lost our minds.  One minute he's counting, reading out loud, and hugging his brother and the next minute, he's screaming, hitting himself, and shoving his sister off the couch.  Just when we think something's gonna go one way it goes flyin' the other. 

So how has Autism challenged our family?  How has it changed us? 

I hate to admit it, but when all's said and done, we're closer to each other and closer to God.  We've been forced to sort through the chaff, cut through the fluff, and get to the heart of it.  All of it.  So as much as I hate that anyone deals with any of the ASD spectrum, and as much as I want to see all the problems of all these families go away, at the end of the day I have to say that in the same way boot camp makes a soldier, the autism battle makes we warrior mamas and daddies and brothers and sisters of autism tougher, leaner, and better.  A little more edgy?  Yes.  More stressed?  Certainly.  But less likely to assume.  More likely to be truly thankful than we were before. In the end are we thankful for autism?  NO.  We are thankful for Ryan, we are thankful for what we have learned, for each other, and for the God who gives us every good thing. 

How has autism challenged us, you ask? 

It's challenged us to live. 

Thanks be to God!!!

Monday, July 18, 2011

Resolve... it's not just for carpet.

Lately our house has been pretty screamy.  Ryan loves to watch movies, certain ones... and he has an astouding memory.  He has been doing more vocalizing lately!  This is fabulous, really.  The fact that he's interested in saying words is amazing.  He has even begun, when we offer him something and he doesn't want it, to say "No grilled cheese (or go home, or whatever)."  We are thrilled about this!  But it seems like for every great thing, autism brings another equally gut-wrenching thing. 

Maelynn and Richie adore their big brother.  Whatever he does is golden.  Stimming, fits, even if he just got in trouble for something and the littles heard the whole thing, two seconds later they have to try it too.  Everything from jumping on the couch to self-injury.  It's all cool if brother does it.  So you can imagine how fun it is in our house when Ryan screams along with characters in a show, or even in a book on the ipad.  Immediately, the littles follow suit, not to be outdone.  My husband has a picture on his phone of a rare night when Ryan fell asleep at the table.  Richie laid his head on the table and pretended to be asleep, too.  Sometimes, Ryan thinks this is hilarious!  The most fun was when, after we blessed our food, Ryan said "aaaaaay-men!" and Richie, being Richie, repeated.  They did this several times, each time a little louder. So very cute and sweet!  We all laughed and laughed!

Then there are the times when it's more difficult to laugh.  The times when he is so beside himself, frustrated, angry, and confused that there is no calming him down.  The boys' birthdays are just three days apart.  When they get birthday money, we've begun letting them shop for their own stuff somewhat.  We guide them to avoid letting them do something like spending all their money on every ball they see (that's Richie's schtick).  The problem with this is once Ryan has done something he likes to do, he will ask... no, demand... to do it every day, all the time.  The most common ones are "ride the people train", "ride the elevator", "Pack your swimsuit", and "go see Miss Staci".  Sometimes he'll ask once, I'll explain, and the explanation is accepted.  More often he'll ask for the same things I COULD SWEAR fifty times an hour.  Say no?  He screams and beats his chest, legs or head.  Or the wall, table, whatever. 

Let me make this clear and fast, since not all of you know us... we do NOT give in to screaming, crying, or demanding children... or anyone else for that matter.  This can mean hours of ask-explain-fit.  Ask-explain-fit.  Repeat ad nauseum.  At times the fits go into full meltdown.  Running around, screaming, hitting himself, anything else in sight, crying, gutterally screaming until he's gagging.  There are almost always little bruises on his chest, which breaks my heart. 

When Ryan asked last week to go to the store, we were fine with that.  We were on our way that direction anyway.  So every time he asked from the back of the van, yes, buddy... we're going.  Hang on.  Then we get there, and he was fine in the cart with his brother.  We needed paint for his room.  By this time, I couldn't think because of the wiggling and fits for "look at toys".  Eric and I tried to reason to no avail, telling him that we were picking colors for his room, tried to let him help... nothing.  The people at the paint counter were awesome, just talking to us even though you could tell one was pretty speechlessly uncomfortable.  We picked a great Thomas color, and after the thrill of watching the paint mixer, it was time to shop for some other things.  The fit continued over toys until he was indescribably scream-demanding to look at toys, then vaccuum cleaners, then toys again, then fans.  Trying to think and losing the battle, I suggested Eric take Ryan to potty with him... after all, Ryan might have to go too.  Five minutes of silence.  Sweet.

After they got back, the fits only escalated to the point where, in the much too long and slow checkout line, all I could do was keep him from hitting himself.  It was noisy, but not embarrassing. 

It was beyond embarrassing.  It was painful. 

It's hard enough to watch your child beat himself silly and scream till he gags.  It's hard enough to wait in line, knowing you have to have the things in your basket.  But having people obviously stop to stare? Just to stare?  Just to stare and shake their heads in, I don't know, pity? Anger? Pride that their kids never did that?  The surety that they could do better? 

I know the fit was over the top.  I know I could have left the basket.  I know, I know.  But the thing is, if I just left all the time, I'd go the whole summer without groceries.  Or Ryan would never enter a store.  Or a restaurant.  I've encountered people recently who I'm sure would rather not be bothered by the noise of autism.  To tell the truth, I'd rather not be bothered by autism either!  I'd love for Ryan to have the ability to effectively communicate everything he needs, process everything around him without the need for sensory input hitting provides, and for him to act just like his brother and sister. 

But that isn't Ryan. At least not yet.

It might be him someday, and we will continue to work hard to help him understand the world.  If we don't try, if we don't endure the stares and the glares, the loud, cowardly not-to-our-face-yet-loud-enough-to-hear comments (thanks, dude in the children's restaurant this weekend), we would not be helping Ryan at all.  We do have to remember who we are when these things happen... called to be slow to anger, slow to speak.  We have to recognize the openings to share and educate, but never at the risk of doing more harm than good.  We have to realize, also, that while it would be great if everyone realized that it's not their place to judge our parenting, that's not going to happen.  We have to remember that by the grace of God, that could be us being insensitive... and it probably has been and we didn't even know it.

I would love to be able to say that I smiled and stayed perfectly calm and hopeful through the store ordeal and the restaurant ordeal, but I'd be lying.  I nearly glared a hole in the guy's head on his way out of the restaurant.  I bawled the whole way back to town from the store.  There are days I feel somewhat trapped in the house.  It takes an indescribable amount of energy to muster the resolve required to shove away the fear that something awful will happen or be said. 

Yesterday we almost lost this battle.  On the way into my inlaws' church, we had another one of these fits, this time over trains.  Church=trains to Ryan, and that's something we have to address.  But it's hard to address anything when you can't get in the building for the meltdown.  We almost went home. We didn't.  As I sat there with Ryan fiddling with his "red" (a pocket etch-a-sketch) nestled between Eric and I, my mind wandered to how many parents of ASD kids might be in the same room as I was.  I knew of one other couple, maybe two with kids on the spectrum in the church.  Out of the hundreds of people before me, maybe four people got it, not counting our family. 

I wondered how many there were outside the doors.  I wondered how many people just couldn't muster the resolve to endure being so very different.  Let's face it.  A six year old boy screaming and beating his chest at random is not a terribly welcome addition in any place where a group is gathered together to do anything remotely quiet or organized.  The week before, for the first time, I lost such resolve myself.  For the first time, I just didn't have what it took. I hope it never happens again, but that's just another promise I can't make.

The fits are hard wherever we are.  They leave me thinking, as the tears roll and in between sobs on the way home, about so many things.  Wishing I could quickly explain that he can't help it in a way that is meaningful... wishing I could change the world and make it a place where people trust each other, and understand that trust has to be issued to each other more generously than judgement.  The funny thing about that scale is the judgment stings more than the sensitivity and trust heal.  So there has to be more trust, more sensitivity than stares, ugly comments, or unsolicited advice.  Do I think this will happen?  I wish it would. 

I wish that would happen for not just my family, but for all the families linked to all the other blogs I read, all the mothers and fathers and people with ASD who need so desperately to be loved not in a conventional way, but in a way that is tangible to them.  I read of so many broken hearts, so many lives in which survival mode is the norm.  For all those families, I pray for peace and comfort.

For the parents who still wait for the first word... for 18 or 20 years.

For the parents who get only three or four hours of sleep.

For the parents who see beaches and pools not as relaxation, but as drowning hazards.

For the children who are covered in self-inflicted bruises.

For the parents who know the pain of not feeling... or not being... welcome.

For all of you who deal with the seizures that Ryan's been spared.

For all of you who know the pain of the guilt of wondering if you're doing enough.

For all of you who are still potty training at 5, 6, 7, 8, 9...

For all of you who choke up when you see something specially made to benefit your child's need or just to make your child smile.

For all of you who know the immediate sick feeling when you haven't seen your child for even a second.

For all of you who know the kick in the gut of having everything you offer, every question you ask answered with a scream, sometimes for days on end.

For all of you who know that those of us who experience the deepest pain cannot be pitied; for we also experience the greatest joy.

For all of us, I pray we will all find peace by casting all our anxieties on Him, because He cares for us.  (1Peter 5:7 ESV)

And I have to tell you... if we hadn't gone Sunday, we would have missed the encouragement of one person who knows an ASD kid, and another who didn't, but just got a kick out of watching him, feet nearly in my face and all. 

Those friendly, accepting faces, though they didn't solve any of our problems, were gifts of the Lord.  To be met with smiles and looks in the eye instead of sideways glares was simply heavenly.  To be enjoyed and not tolerated was blissful. 

Thanks be to God!!!

Thursday, July 14, 2011

You know what's funny?

I get a few minutes alone, and it's so quiet that I can't think!  Once the noise of silence subsides, I can't stop thinking.  So here I am again.

There have been several posts about the "R" word lately in so many other blogs.  Somewhere between those posts and dealings with my dementia-riddled Grandad this trip, words like respect and dignity keep pinging around in my head. You go in these places where people have varied amounts of understanding and abilities, sicknesses and capabilities, and start considering putting someone you care for in a place to care for them, and all of a sudden it matters.  All of a sudden, the intricacies of someone's personality that we don't even think about can cause major disasters. 

This is where Grandad meets Ryan. 

I'm not a doctor.  I'm not a liscenced anything, save band director in Texas, and that means little with my current occupation.  But I am Ryan's Mom, and I am Robert's granddaughter.  I've spent time with both of them, and I'm amazed at the similarities between their conditions.  One, in so many ways, is a negative of the other.  Grandad and Ryan both need routine.  They both have (what I call) anchors- things that are not necessarily routine, but are things like foods, people, treats, words, clothes, or objects that help bridge the gap between the known and the unknown.  Nanny held Grandad together, if not sheerly by her presence.  If we weren't sure, we found out last November.  Grandad adored my Nanny from the time they were in high school.  He hitchhiked across Oklahoma just to see her.  There are so many precious, romantic stories of their courtship in the days before instantaneous communication.  His family owned and ran the telephone company in that part of the state, and Grandad still relied on postcards and hitchhiking to stay with Nanny when her family moved from Stilwell to Enid.  When he lost her, it seems like he lost himself.  I hate to say it, but losing Nanny was like opening a drain for him.  So when they had to take him from his home of nearly 40 years to keep him safe, you can imagine what it's been like.

Traveling with Ryan is much the same.  We take away all the norms... the house, most of his stuff... and replace it with wherever we're going (which is usually family, but still).  Say what you will, family is still important, and this is a priority for us.  We try to keep some of the anchors, but that can become complicated quickly.  As I mentioned in my last post, we have the God-given blessing of family who love us enough to want us around no matter the meltdowns.  We fight for normalcy and novelty at the same time on these trips, but novelty has to come with anchors.  We know what Ryan loves, and we have to find something he loves to do wherever we are. Always within the bounds of his (and our) mental and emotional health, and that can be hard.  So many land mines.  So many ways to torpedo an entire day. 

Ryan used to love being at Nanny's.  Nestled in the side of a hill overlooking the valley that is Heavener, the best part to me is the driveway.  You can lay on the driveway and almost feel like you're flying... I can still feel the warmth of the concrete on my back.  In the house, Ryan had the run of the place, except for the usual Ryan-hazards.  Back when he was still tiny, cute, and fits weren't as awkward or dangerous, Ryan used to love to sit on Grandad's lap and share a bowl of Frosted Flakes and a banana.  I have a pic, but no scanner.  It was the cutest thing!  Just like he used to do for me, Grandad took all the pens and the penlike screwdriver thingy (I know... so prepared) from his shirt pocket for Ryan snuggle time.  They'd "bite for you, bite for me" through two bowls of cereal or so, then Ryan would wiggle out and do something else.  But he'd snuggle Grandad more than just about anyone.  He never said it, but we knew he loved Grandad.  Heck, he doesn't say it about very many people. 

But now I know. 

I know Ryan loves my Grandad. 

It was time to leave Heavener this time, and I was my usual amount of super-sad to leave home since we lost Nanny.  Everything is so different.  So hard, yet so comforting still to be there.  As I dodged the "alarm system" of pooches to load the van, every time I came back in the house, Ryan kept asking for Grandad.  "See Grandad" he'd say.  I tried to avoid explaining.  How do you explain this all to a six year old, much less to one who isn't yet able to express his feelings in ways other than screaming very effectively?  But he pressed.  "Grandad get home from work?" "Go see Grandad?"  "Go to Grandad's house?"  It was miraculously easier to explain why he couldn't go to Nanny's house (yes, same place) because "sweetie, it's different up there since Nanny moved in with Jesus."  That was a good enough answer for him, by the way. 

So I finally decided that we had to take Ryan to see Grandad.  The night before when I saw him, he seemed happy and content, calm and happy to be back in Heavener if not in his own home.  So in 102-degree weather at its coolest, with a van loaded to the gills with two adults, three kids, and an Australian shepherd, I steered the van to the nursing home, parking in the shade.  "I'll just be a minute,"  I told Eric.  "I can't imagine we'll stay too long." 

We walked in, and just as if he was waiting for us, there was my Grandad on the couch in the entrance.  Ryan walked up and said "Hi Grandad" and Grandad said hi to him.  Then after I'd explained to Grandad (who I'm not sure knew who I was) that yes, this is home now, and yes, his daughter is bringing more of his things soon, Ryan stopped exploring and walked over.  He sat down, laid his head on Grandad's lap, and whispered, "I love you, Grandad." 

I about died.

Grandad didn't hear, so I managed to choke out "He said he loves you, Grandad" determined that my boy's precious words would fall on the correct ears.  Grandad smiled, patted Ryan on the back, and said "I love you, too." 

After a confused couple of minutes of conversation, I went to deliver (with Ryan) a pillow I brought for Grandad to his room.  I also wanted to make sure I knew where it was, because he seemed confused as to where he was supposed to stay.  We went back to Grandad and I sat down beside him while Ryan buzzed about the room, scouring the place for every button, spinny-thingy, and door.  In between hopping up to check on Ryan or turn the residents' tv back on before they revolted at missing a second of Springer, I asked Grandad if he'd like us to walk him to his room.  "Would you please?"

Of course.  You only taught me to ride a bike.  You only taught me to shake hands firmly, look people in the eye when I'm speaking to them, and that I should be paying attention during sermons.  You only acted as the most constant earthly father in my life... yes, sir... I will walk you to your room.  We've had our differences, but yes, I will walk you to your room. 

So I helped Grandad up, then took Ryan's hand.  Can you say polar opposites?  Snail's pace, fragile, unstable versus wiry, hyper, wiggly, screamy.  Oh dear.  Immediately I wonder how this will go. 

I was amazed. 

Ryan pulled at me with my arm looped through Grandad's gaunt elbow.  But not hard.  He also loudly proclaimed, "Nobody touch him!" all the way to the room.  Over and over.  I might be overthinking this, but as Ryan's mom, I felt like he wanted to protect Grandad.  Soon as we got to the room, he stopped.  Once in the room, I looked around as I helped Grandad get to bed.  The frame with several pictures that Mom put in his room struck me.  Pictures of me and my kids, pictures of my uncle and aunt and my cousin, pictures of my sister... all paried with black and white pictures of a beautiful blonde woman who once reached into the pocket of his coat, found the ring, and said yes.  There was also a young man staring back at me with his dog, Pal.  The same young man on a bicycle with his brothers... probably the same one he rode when he filled his pockets with raisins the day a train wrecked in Stilwell, OK.  He ate way too many raisins that day and hated them forever!  That young boy grew to a man, lived life, loved, worked, and now resides in room 24. 

I can't help but remember that connection Ryan has with Grandad.  It's almost like they're complete opposites, but are so much the same.  I also cannot shake the fact that I am headed, likely, for much the same.

When I'm at Grandad's age, Lord willing, I will be able to say I had the privilege of having three beautiful children, was married to the most wonderful man I could have asked for, and when all that is through, what do I have?  As far as possesions, even with a five bedroom brick house on the hill, the only possesions I will be interested in are my velcro tennis shoes and my eyeglasses.  Maybe I'll be one of those sweet ladies who lets the beauty college kids practice, turning my hair light purple just in time for Easter.  More than anything, at that point, the things I "did" don't matter.  My degree?  Psscht.  Who cares?  What really matters is the bricks.  The mortar.  The seeds.  The water.

It's the now.  The getting up every day.  The smiles, the failing, learning, trying again.  The hugs, the laughter, the tears.  The days when I wake up to screaming about this or that, be it ipad, "SWIMSUUUUUIT!", Thomas, jelly toast, or drumsticks, the days when it seems like he's getting worse instead of better... those are the days I have trouble.  The days it means more when I flatten out in bed, look up, and beg for help.  Admit I don't have it.  Ask for it.  Just get me out of bed, Lord.  Give me the patience.  Give me peace.  Help me.

These times, these frustrating times when we can't seem to go anywhere... and I mean ANYWHERE anymore without so much effort... when it's so exhausting that so often I'd rather just shut the curtains and protect us from the stares and comments... it is soothing to remember that just trying again is a brick.  I was calm and patient through that fit... yay!  Mortar.  I remembered to make Ryan wait, and remembered to praise him for asking in the first place.  Seed.  Ryan didn't scream when I made him wait.  Water. 

When I don't manage to lay bricks and mortar... when I forget to plant the seed and pour the water, that's where Christ comes in.  I can't lay them all the time.  He knows that.  He's there to cover that.  And that's why I get up.  I know I am called to be my childrens' mother.  I know God doesn't make mistakes.  Therefore, no matter how I *feel* (and the feelings are SO hard), even if going through the motions is all I have for the moment, having the faith to get up and do that much in His name will be blessed. 

So in the end, in my room 24, I pray I'll be reminded even if I don't know who they are, by my children, that it's all about getting up every day and living.  If I am blessed with remembering, I hope I will have laid enough bricks and mortar, seeds and water that I will have beautiful memories of the people staring at me in the photo frame.  And if I'm not blessed with my memory... I know I will have peace. 

Thanks be to God!!!

 Kingdom Comes
-Sara Groves

When anger fills your heart
When in your pain and hurt
You find the strength to stop
You bless instead of curse
When doubting floods your soul
When all things feel unjust
You open up your heart
You find a way to trust

That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming

When fear engulfs your mind
Says you protect your own
You still extend your hand
You open up your home
When sorrow fills your life
When in your grief and pain
You choose again to rise
You choose to bless the name

That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming

In the mundane tasks of living
In the pouring out and giving
In the waking up and trying
In the laying down and dying

That's a little stone
That's a little mortar
That's a little seed
That's a little water
In the hearts of the sons and daughters
This kingdom's coming

Sunday, July 3, 2011

Ranch terror

"I'm sorry, we're out of ranch."

That's what the guy at the scary clown restaurant uttered in a little-too chipper manner the other day.  Those words are even scarier than the clown.  Miracle of miracles, thank you Lord, Ryan chose to eat his chicken nuggets with catsup that day.  We'd waited for our food longer than usual in a fast-food establishment already, and Ryan was getting a little hyper, to say the least ("a little hyper" for a kid like Ryan is... well, cross a spider monkey and a laughing hyena and that's close.  Hey, at least he's happy like that).  He settled, ate, and we were able to get done and get our groceries.

Fast forward to this evening.  Mom is at work out of town for the weekend, and we chose to try a restaurant that we'd heard several good things about (including that they were super sweet with kids... and they were).  We picked a corner table, out of the way.  The table was perfectly placed in a front window so the guyzos could watch the trains (trains are big in my hometown... really, really big).  It was completely empty except for us when we arrived.  Knowing that most of the churches in town are in session Sunday evenings around six, I thought this was the perfect time to give 'er a test run.  Don't even ask if we visit churches while we're here.  Short answer?  Too much stress.  I'd love to, but it's too much.

So we tried it.  With no one in the place, I silently spiked the ball.  Oh yeah!  Mama one, autism ZIP!

First, I picked a table that was closest to the stupid sticky fly strip.  These are pretty common in this part of the world.  "Shoo-flies," as Ryan calls them, are meal-killers and deal-breakers for our boy.  I think it's some hybrid of the buzzing and unpredictability combined with that light touch if they land on your skin.  The minute they start... even one... buzzing around Ryan, he starts shaking, crying "it's a SHOO-FLY", covering his ears, and generally freaking out.  One uber-hilarous, shocking moment... Ryan tried to pet the fly.  He gently stretched out one finger and tried to touch the fly on the window.  Needless to say, the shoo-fly wasn't interested in making friends.  He was pretty talented, too.  Eric is pretty awesome at killing the little buggers, but this one eluded him.

Next mistake... ambition.  Silly mama.  I ordered some fried quesadilla that looked like it'd be just like cheesy chippies at our usual Mexican restaurant back home.  Soon as it came out, he asked for a burger.  D'oh!

Then, the little dude needed ranch for chips.  He wasn't interested in the cheese dip we ordered, other than making a nice chip-bouquet using the cup as a vase.

That's pretty much it.  Well, those are the antagonists.  The behavior resulting from the antagonists included banging on the window, screaming, beating his chest, banging on the table, yelling things like "want some RAAAAANCH!", and thrashing around in his chair.

The first mistake was actually trying to go out in the first place.  Mom's having a bit of a drain problem that makes dishes a challenge, and she's looking at moving very soon. Long, long story.  Ryan misses Granny while she's at work, and his behavior shows it.  We knew he was having a rough day, yet we needed dinner... I could have cooked.  I could have brought something home.  But no.

This is one of the many times Eric and I want to smack ourselves, repeating "STUPIDSTUPIDSTUPID!"

But we've learned, among a lot of things, that you have to just keep swimming (thanks, Nemo).  Keep going.  Keep smiling.  Keep your chin up.  Even when there are tears dripping down your face, do your best to stay calm, respond out of love.  We don't have this mastered, mind you.  Knowing and doing are separate actions.

I must admit, when we got there, I thought it was going to be easy.  Then, when people started arriving (yeah, I was wrong again) I was looking around to see if I knew anyone.  When the fits started, I stopped looking around.

That's hard to admit.

It's hard to watch your three year old and 17 month old act like little angels, and be largely ignored while you deal with mister "ranch is life".  It's also hard but amazing to watch your three year old give his favorite toy to his older brother to help him calm down.

I am proud of Ryan and all he is, just as I am proud of Richie and Maelynn.  I just can't describe how it feels to watch your son in such a disturbed frenzy, powerless to help other than to stay calm and ride it out.  My dear friend Tawana, who also has an ASD boy, said one time that she wished there were an "autism bubble" that she could throw up when her sweet boy is melting down in public.  A little, instant privacy bubble.  Oh, how I wish there was such a thing.  The thing is, these things are not really fits.  Not all of them. Telling the difference between a fit or a meltdown is half the battle sometimes.  There are times that if I'm thinking I can avoid meltdowns, or at least have them at home.

Remember the poem "Footprints in the Sand"?  You can view and read it here.  I also included it below.

One night I dreamed I was walking along the beach with the Lord.
             Many scenes from my life flashed across the sky.
                  In each scene I noticed footprints in the sand.
                       Sometimes there were two sets of footprints,
                           other times there were one set of footprints.
                                  This bothered me because I noticed
                                that during the low periods of my life,
                             when I was suffering from
                         anguish, sorrow or defeat,
                     I could see only one set of footprints.
          So I said to the Lord,
      "You promised me Lord,
         that if I followed you,
             you would walk with me always.
                   But I have noticed that during
                          the most trying periods of my life
                                 there have only been one
                                       set of footprints in the sand.
                                           Why, when I needed you most,
                                          you have not been there for me?"
                                 The Lord replied,
                          "The times when you have
                  seen only one set of footprints,
          is when I carried you."
                                                   Mary Stevenson

There are so many times I don't necessarily "feel" peaceful, yet I don't lose it.  The things that frustrate us the most continue, yet we keep going.  We keep starting over.  It's not always fun, but we manage.  We figure out a way to laugh, or at least not lose faith.  People as us how we do it.  The answer?

That is when He carries us.

Those times when we don't know what's next, don't know what else to take away or to use to reason, or when we've been completely outsmarted and our carefully conceived plans are made to look ridiculous in an instant, He carries us.  When we look at each other for comfort, but all we find is a mirror of the frustration, He carries us.  Holds us together.  We will not quit living completely.  We will adapt, we will guide, direct, and fight through it... but we will certainly not quit!

How do we do it?  So many people have asked.

We don't.  He does.

Praise Him!

  • Praise Him! praise Him! Jesus, our blessed Redeemer!
      Sing, ye saints! His wonderful love proclaim!
    Hail Him! hail Him! mightiest angels in glory;
      Strength and honor give to His holy name!
    Like a shepherd, Jesus will feed His people,
      In His arms He carries them all day long;
    O ye saints that live in the light of His presence,
      Praise Him! praise Him! ever in joyful song!

  • Praise Him! praise Him! Jesus, our blessed Redeemer,
      For our sins He suffered and bled and died;
    He, our Rock, our Hope of eternal salvation,
      Hail Him! hail Him! Jesus, the Crucified;
    Loving Savior, meekly enduring sorrow,
      Crowned with thorns that cruelly pierced His brow;
    Once for us rejected, despised, and forsaken,
      Prince of Glory, ever triumphant now.

  • Praise Him! praise Him! Jesus, our blessed Redeemer,
      Heavenly portals, loud with hosannahs ring!
    Jesus, Savior, reigneth for ever and ever;
      Crown Him! crown Him! Prophet and Priest and King!
    Death is vanquished! Tell it with joy, ye faithful,
      Where is now thy victory, boasting grave?
    Jesus lives! No longer thy portals are cheerless;
      Jesus lives, the mighty and strong to save.

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