Wednesday, March 27, 2013

Blue Streak

I am weary with my moaning;
    every night I flood my bed with tears;
    I drench my couch with my weeping. Psalm 6:6

It's the topic that permeates everything we do.  It's the destination to which my mind wanders and often jumps.

It's the thing that bothers me.  If there's anything that challenges me to the core of my being, this is it.

If there's anything I can rattle on about, this is it.  It seems that I can only get two sentences into a conversation before something autism-mama hops from my heart and falls off my tongue.

If there's a topic I sit to write about and grow weary of hearing the words leave my fingers, this is it.  And yet, it's something I'm compelled to talk about.  Write about.  Share about.  Cry about.  And honestly, I'm sure at times that someone logs onto Facebook and rolls their eyes at another. Autism. Post.

It's that darned autism.  It's autism awareness.  Blue lights.  Puzzle pieces.  Meltdowns.  Stimming.  Hand-flapping.  Screaming.  Routine.  Therapy.  Therapies.  Diagnoses.  On and on and on into oblivion.

But again, here I sit.  Here I sit because while I'm tired of the broken record I am, I'm more tired of the stigma.  The fear of going places.  The knowing that everything could either go fabulously, gloriously well every time we step out to go someplace as simple as a convenience store, or it could end in head-beating, fist-banging, foot-stomping heartbreak.

It's one of those things that I avoid mentioning, because frankly, June Cleaver didn't whine.  A nice mom wouldn't whine.  A nice, caring, loving mom wouldn't complain.

Well, guess what?  June Cleaver didn't wear jeans and t-shirts, either.  She had a teeny, tiny waist, vacuumed in pearls, and certainly never fed her kids those 99 cent pizzas.  Never.

And I'm pretty sure the Beav wasn't autistic.

So where did I get the lie that I should never tire of the repetitive?  Where did I get the idea that it would be sinful to mention that this is hard?  That I'm flat sick to the teeth of watching him struggle to enjoy things that seem so obviously easy to others?

The truth is that June Cleaver... the ones we'd see to be the perfect mom... were apparitions.  There's no such thing.  We are all fallible and prone to exhaustion.  And let's get this straight... exhaustion and fatigue with the way things are going does NOT mean I'm ungrateful for my kids.   You know what it does mean?  I'm human.

Just like David.  Yes, the man after God's own heart himself.  Flip to the sixth Psalm.  Notice that David cried out in frustration.  Exhaustion.  Fatigue.  Just sit down and read through the Psalms and you'll feel David's pain and weariness.

Read on.

After confessing his humanness, his problems, and the overall unfairness of it all, he is given a heart of worship.  A heart of peace and even thankfulness that God understands.

Just this morning, I didn't want to get out of bed.  There's so much to do, and yesterday was another day of cramming things together so that I get the things done that my family needs me to do.  More laundry, more dishes, more cooking, more juggling this and that.  My husband came in for the second time, empathizing that he didn't want to get up this morning either.  All dressed and handsome already, he sat down on his side of the bed, took my hand, and said, "Honey, how about I pray for your day?"

As I told Eric that there was just too much to do and I was just tired, he took my hand and carried my concerns to the Lord with me.

Yes, I'm still tired.  Yes, there is still a ton to do.  But I was, as God promises in Ezekiel,

 (And) I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh. Ezekiel 36:26

Although there is still physical just-tired-ness, my will to keep pedaling and keep putting our story out there was renewed and refreshed.  And in the renewal of my heart, the tiredness, aches and pains, and other physical wearinesses fade.  

But if I hadn't gone ahead and given voice to the truth... that I was frustrated, tired, and discouraged... if I had not reached out and asked for help... I wouldn't have seen the amazing, God-given encouragements and heart-replacement I needed today.  

So go ahead.  If it's hard, say it's hard.  Call it what it is.  Once you've painted that picture, step back and watch the contrast between the frustration and God's glory.  

Trust me.  It's breathtaking.  

No, it's breath-giving.  

Thanks be to God!

Tuesday, March 26, 2013

Max and Moot

So often I just can't understand him.  His speech is a roller coaster of varying degrees of quality ranging wildly from slurred and muddled to clear and crisp.  The clear and crisp is always with a delicious, adorable seriousness.

We waited for those first real words.

We waited... and waited... and waited some more.  We are so thankful for his words!  Still, while he can speak, his verbal communication still lacks.  It is better, yes.  And it is true that he can pronounce just about anything he wants.  The complications arise when he's to think and express himself verbally.  So often the first word or two will come flying out, clean and clear as day.  The first few words are then followed by a garbled smear of something unintelligible.

Realizing the treasure of his speech, we tend to try hard to hear what he's saying.  We don't want to miss anything he's saying, and honestly even the repeated phrases from movies and shows and apps are precious.

This morning, on the way to school, Ryan kept saying something, but the only thing I could remotely get was "Max" and "Moot".  Hmm.  Must be a new cartoon he saw somewhere.

Then he leaned over, and with the car stereo on tape with no tape available, he clicked down the volume, saying each number as he turned the knob.  With hand-flapping, humming excitement, he counted down until...

you guessed it...

"mute" appeared on the display!

He said "moot" but after a couple minutes, he clicked the volume up, number by number again until it got to "Max".

He knew exactly what he was trying to say.  And with a little minimalist Ryan-argument, I convinced him that it was pronounced "mute"!  

This is one of his new games in the van on the way to school.  His other one is super adorable.

On the way home from ABA the other day, he was in the front seat because his brother and sister stayed back with their Granny.  He fished a penny out of the ashtray, laid it on his leg, and mutter-sang something about a little money.  Then it was two little monies... something unintelligible... one came along and then... something unintelligible... and I realized he was not just talking along, he was making up a little song and game with the spare change!

He played that little game all the way home.  Now he does it on the way to and from school, all the way from one to ten and back again.  
I never thought that a little song like this coming from my seven year old would thrill my soul.  
I never thought I'd love the idea that my son liked to count down the numbers on the volume and found such joy in doing so.  
I never knew my heart could be so full and so tired and so exhilarated and so frightened for the future all at the same time.  

And I never knew that looking into the face of my babies could teach me to be so thankful for and rest in the sovereignty of God.  

Thanks be to God for the little games he plays that are so very opposite of little.  

Friday, March 22, 2013

Home Project

The other day, Ryan was in a fit about the difference between spring break and school time.  He was quite unhappy and confused at the change of having to do homework instead of what he wanted to do, etc.  I got in the floor to do his "word eraser" which is really his reading fluency folder from school, and  before I knew it, we were snuggling in the kitchen floor, giggling.  He needed calming proprioception, which for us, usually means pressure.  I'll press his joints together, rub on his back and legs, push on the bottoms of his feet, and even down on top of his head.  And you know what I caught myself thinking?

Why don't I do this more?

Why didn't I convince myself of this before?

Let me back up a bit.  For a long time, we've operated under the "let's get this behavior under control" mode.  And yes, behaviors such as hitting himself, yelling "no" when he's told to do something, screaming at random, and just plain throwing a fit when he doesn't understand must be met firmly.  Loss of privileges is still in play here.  But the attitude of our hearts while attempting to shape his was one of fear, mostly of the future.  Of how he'd fit into places outside our house.

Then I started thinking about this being his home.  Of how I loved going home, and now love going home to Eric's folks.  And my own words from the "Vacating" post keep ringing in my head.

We can breathe.  They know us here.  They love us here. 

We can be us here.

We needed a self-check.  A report card of our hearts and attitudes, the basis of everything we do so automatically. 

What we've loved so much about home is the same things we want to give our kids.  They can be who they are.  They don't have to think so hard about every little thing they do, although we do expect manners and kindness and loving attitudes.  

So if Maelynn needs to cry about having to eat her vegetables or for not getting to watch what she wants to watch, she can go have a good cry in her room.  

If Richie is angry and needs to pace and grumble and work through his frustration, he is welcome to go in his bedroom and do so.  

If Ryan, who has maybe less than half the verbal communication and expression skills of his brother and sister is hitting himself and screaming, maybe it's time to roll around in the floor and take some time to constructively help him find his place in the world with proprioception and snuggles.  

At your house, if we're ever there, we'll not be rolling on the floor.  We'll not roll on the floor of a store, either.  You will likely catch us snuggling and participating in proprioception at church during a service, but I'll promise we'll keep our seats.  


Because he needs a physical anchor, just like we do.  He won't say it, and neither will Richie or Maelynn.  But we know them here.  We love them here. This is their place to be who they are, which makes sense, because we're to help them become who God made them to be.  Yes, they need guidance.   They will get it.  But they will also get a place to air their hearts.  

If they don't learn to air their hearts safely with us, how will they learn to pray?  If we can't help them through things and help them learn God's principles, who will?  If we don't start now, then when?  

So if you knock on our door and catch me on the floor with one of our kids, or if you see us in the back of the church (where we sit to avoid being distracting) pushing on his hands or legs with him smiling in relief, feel free to ask questions... but please don't be shocked if we don't stop.  

Just as Eric led me into his parent's house for the first time, calming my fears by saying, "It's okay, they know me here," someday our kids will lead friends and even spouses here.  And I pray they'll be able to honestly say the same thing.  

Thanks be to God for HOME.  

Thursday, March 21, 2013

Happy Birthday, Eric!

It's been busy.  Crazy busy around here.  And while my dear husband is playing with his new toy, I'll take a minute to tell you about what kind of guy sits at my feet, goofing off after a hard day of work and a fun evening of birthday.

He loves his family.  And not just, "Yeah, they're cute."  He gets in the floor with them, gets dirty, and not just dirt-dirty.  Autism dads especially know all about late potty training and the cleaning messes that go with them.  Yeah.  As Richie would say, he gets a punch on his man-card for that.  For real.  A big one.

When we had babies, he insisted (and still does, when one of the kids wakes in the night) on getting them.  Yes, he brings them to bed with us, but he rises once they're good and asleep and puts them to bed.  And it's not just for me that he does this, although he knows and will tell you that I'm with them most of the rest of the time.  He wants to give this to his kids.  It's something he wants to do for them.  He always has.

He's not afraid to listen to me.  From home to school, we're married.  And by that, I mean that I did what he does now, and he does what I do at home when he can.  We met working, and he respects my work and my opinions about all things band.  Not every man is willing to do that.  Not all the advice I've given has been helpful, and in those times he's gracious.

He's not afraid to be wrong.  Wait, no... he's afraid of being wrong just like the rest of us, but fights to overcome that fear for the good of us, the kids, and to the glory of God.

Which reminds me... every night that he's not working, he's here reading stories after he helps with bathies.  And not just any stories.  He reads the cute, cool ones, but he also makes sure to end with a story from our Jesus Storybook Bible.  Then he prays with the boys, I pray with our girl, and we put the kids to bed.  He holds me and prays for me when I'm scared, sad, or super happy.  He sings out loud in worship.  Another mega-punch on the man card.

He's the kind of man I want my sons to be and my daughter to marry.

He's the kind of man I hope and pray will be around for another 42 years.

Every day I love him more than the day before.  Every night, I thank the Lord for giving us each other to argue with, bless, laugh with, cry on, and hug.

I wouldn't want to navigate life with anyone else.  I always wanted someone wonderful, but God out-imagined me far and away with Eric.

Thanks be to God for out-imagining me on so many levels... but today, especially for giving me such an amazing man with which to share this life you've given.

I love you, Eric.

Monday, March 18, 2013

Sprinkler Letdown

It's one of those weekends that makes you happy to live in Texas.  

Last weekend, that is.  While we're seeing blizzard headlines in other parts of the world, the temperature reached over eighty degrees this weekend.  After a day of mowing outside and cleaning, organizing, unpacking, and laundry inside, we headed to the dollar store after a trip to the city park.  Our sprinkler finally kicked the bucket last year after almost ten years of faithful service, and acquiring another was imperative. 

The kids frolicked in the new sprinkler with pure, unabashed delight almost all evening!  We even had dinner in the backyard at the patio table, enjoying the warmer weather and cool breeze.  Their joy was completely contagious.  It was such fun that, after church, lunch, and a quick trip to get Eric's new grill, we headed home for a repeat of the evening.  

As we sought part 8 and washer D and bolt A, their giggles continued again until dinner, which they were again more than happy to take outside.  In just minutes after their dinner, they were in an out of the bath and ready to snuggle down in bed.  

This morning went amazingly smooth for the first day back from a break.  He had a marginal day at school, and an average day at ABA.  As we pulled into the driveway I heard two things: 




Indeed he did have homework, and indeed we were not going to use the sprinkler except on weekends.  You know, water bills and all that.  

The kids all played outside, even letting Ryan do his spelling words on the patio table so that we could stay outside.  Around the time we decided I needed to go make dinner, things went down hill fast.  

The good news is that Ryan really likes being outside, playing in the sprinkler, then having dinner, then playing some more.  

The bad news is that when Ryan really likes something, he wants to do it ALL. THE. TIME.  By "wants" I mean hits, yells, cries, screams and demands.  The evening, from here out, was noisy. 

We found something Ryan loves, and that is wonderful!  But at the same time, it seems that we may have set him up for upset.  He really does not understand why, if something is simply fabulous, he can't just do THAT all the time.  

This is one of those ways it's tempting to say, "Eeh, my kid does that."  But trust me.  If you could see his face... feel his confusion... hear his wailing, "GO OUT SIIIIIIIIDE!!!!!" through tears, you'd know. It's just painful for him.  If you could see his beet-red chest from the incessant frustrated hitting, you'd see his pain.  

We have to do the fun stuff.  We have to help him find the balance between work and play that we all must strike.  We have to help him, as we have to help our typically-abled kids, learn to work and even find joy in being productive as we seek to be good stewards of the opportunities we've been given.  

But for now, if he takes a liking to something, get ready.  

Yes, it's painful to watch him struggle with this understanding of life.  Yes, I brace myself when it's time to insist that he do something that he needs to do but likely won't like.  But there's this face... this sparkle in his eye... and in that moment, watching him giggle, taste, and savor life with his brother and sister, it's all okay.  

Better than okay.  It's wonderful.  It's a reminder of Romans 8:28, and a great privilege.  

So whatever this roller coaster holds, sign me up for tomorrow.  

Thanks be to God for his comfort. 

Thursday, March 14, 2013

Ice Cream Security

"Ice cream for the fam: $15 or so. Madagascar 3 soundtrack:$10. Dancing in the car with my babies on the way? Priceless. :-)" ~my Facebook status last night

It was a warm, sunny, spring evening.  When you've already been to the park, you've had your dinner, and there's still plenty of sunshine before bedtime, what do you do?  

Why you go and get ice cream, of course!  And where there's a princess, there will be pink ice cream.  And where there's a brother who doesn't like ice cream (I know!) there is annoying to be done.  Well, there's also a lime-aid for said brother.  

 Ryan, on the other hand, loves ice cream.  He also loves "black cookies", his name for his beloved Oreos.  So there was a nice cone of yummy cookies and cream... and a small heart attack when at first I didn't see it in the freezer.

As we entered the store, however, I had another near-panic when I remembered one thing... we had to wait in line.  I had been looking forward to this trip for the littles, because it's a rare treat... even a delicacy... in our family to get to stand at the counter and choose whatever flavor of ice cream you want.  This was our Maelynn's first time to get to do this, and of course her choice was cherry chocolate chip, simply because it was pink.  

On our way in the store, I remembered this little tidbit of useful information about standing in line as a group of about five teenagers walked in the store just ahead of us.  Enter small panic attack.  

Now this is something I did in this particular chain store growing up bunches of times.  It was a treat, yes, especially when it was just mother and I living in OKC.  But never something to talk about before hand.  Waiting in line was just a little more time to stand there and look at the bright different colors of frozen goodness.  More time to visit with mom.  

For our family, in this family... a wait in line is a meltdown waiting to happen.  It's practically chasing one down in the crowd and shouting, "Hey!  Over here!"

The littles are easy.  They were good and super excited to pick their treat.  Ryan?  He wiggled, giggled, and got so close to the folks we waited behind that it made me uncomfortable.  It was like trying to force a puppy to wait in line.  Only this was a rather large puppy with opposable thumbs. He grasped the top of the ice cream freezer window/sneezeguard thing and tried with all his might to jump... I'm not sure if he was headed over or on top or if he was just trying to see, or maybe how high he could jump?  

As I watched him, I fought the urge to cut and run.  The noises in there, after all, would surely set him off soon.  I never thought about it before, but a place like this has a lot to take in!  Lots of blenders whirring, machines running, people around and about.  I could not believe that I didn't think of this. 

It was close to the time we paid for our cones when I realized, as a dad in the family behind us obviously stared at Ryan in his stimmy, happy world... we're just going to have to get used to some staring.  

This dad wasn't trying to be rude.  I don't think he was disapproving, but he and the boy in front of us in line had apparently not experienced someone like Ryan.  And the truth is, no matter how used all his behaviors that I am, no matter how much I advocate, we will be stared at.  

Here's the best part of this... it didn't bother me.  Finally.  Granted, I truly believe these were stares of awe and maybe interest at something they'd never seen.  But every stare used to hurt.  I was ready to explain if someone happened to be interested enough to ask, but no one did.  Even the sweet teenage girl who Ryan sidled up to, saying, "Hi there, lil' fella!"  She smiled, she responded, but she didn't ask.  Which is fine. 

Asking would have been fine, too... but only if she wanted to know.  

If you do ever just want to know, just to learn, not as an opening to share your opinion, it's fine to ask... and here are some good starter questions.  Lisa at AutismWonderland posted 10 Questions You Should Not be Afraid to Ask an Autism Parent.  Good starters.  

But frankly, I am thankful that we didn't think about how hard waiting in line could be.  I'm glad, for once, that we just got excited and went.  

And I must thank the Lord for the peace and security to not be ruffled by the stares.  At least not this time.  

And most certainly, thanks be to God for ice cream, little kids, and warm spring days; for they make the most cautious, practiced, routine mama in me remember what it's like to be a little carefree.  

Wednesday, March 13, 2013

Dear Other Mother

Dear Other Mother at the park, 

Thank you.  

Thank you for helping your daughter say hello to my daughter when she shyly but with all the boldness a three year old girl can muster, said "Hi.  My name is Maelynn.  What's your name?"  

Thank you for talking with my younger guy when he started to tell you about his trains with all the random excited fervor of four-year-old-ness.

Thank you for not looking at me like I had three heads when I got choked up listening to my daughter introduce herself, or even more when I saw Richie talking to you.  

See, I waited so long to hear these things from their brother... things I still haven't heard... and I cherish the blessing of their social skills, and the fact that their speaking faculties are all in place.  

Oh yes, he can speak, as you found out in the next few minutes.  But most of his speech is contrived of phrases he has gleaned from apps, movies, kids' tv shows, and things we've struggled to teach him.  

Thank you for your reaction when you suddenly found this precious face just inches from yours, spouting "Well HELLO there!" 

Thank you for talking back to him, not looking straight past him. 

Thank you for gently attempting to continue the conversation.  

Thank you, oh thank you, for replying to his repeated spout of "Will I see you again?" with a smile and "Maybe so!" 

You don't know, Other Mother, how you blessed my heart yesterday.  Unknowingly but oh-so-willingly, you were a part of continuing speech therapy, social circles, and all these things we do.  

You don't know how you blessed a mother who is so tired.  So frustrated with trying to do fun things in the family only to end up with a screaming, hitting mess, scrambling to the nearest exit to help things calm.  

Not everyone responds the way you did, but boy, did you do a great job.  

Thanks be to God for the ones who just love right back.  

Tuesday, March 12, 2013


Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.~Matthew 28-29, ESV

Always so much to do and so little time.

Dishes rinsed, dishwasher loaded.  Laundry sorting.  Dishwasher's running, washing machine and dryer spinning... time for sorting.  Keep this.  Toss that.  Where are we going to put this?

Rollicking pretend crashes through the kitchen.  Cowboy Woody, Jessie, and Bullseye thunder along on their way to catch some criminals.

Adulthood looks into the rearview mirror... or what it assumes is the rearview mirror... into the eyes of childhood.

I don't have time.  Not enough time.

Will you play princesses with me, Mommy?

Still not enough time.  Clean dishes and clothes call; dust bunnies answer with their plea for attention.  Who wins this time?  The call to a clean and well-put-together home is next to a happy home.

Or is it?

So we attempt a balance.  Yes to princesses, yes to books... and yes to clean and organized.  Maybe decorated too.  Is this possible?  Has anyone completely, always, consistently struck a perfect balance here?  Ever?

Between keeping therapy, school, band, and church schedules and the attempt to maintain a Ryan-happy routine, all the while keeping the home-maintenance and chef duties, where do we find time to be kids?  We try getting away.  But the away for us is never really away.  We take autism and it needs wherever we go.  We are who we are wherever we go.

Autism is we.  It is not he.  I cannot pretend to turn it off.  I am mom; I am autism mom.  I know that there is a me in here somewhere... I know I have interests, I know I have God-given talents, I know I am capable of more than autism mom.

But like I said, I love my boy... we love our boy... our brother... and so complete inclusion with what we do as a family is essential.  We are his schoolroom, though he goes to school.  He learns through our interactions constantly, good and bad.  I say the therapy schedules are killer; but it is really the constant-ness required of changing the way we do things to keep up with how he changes.  And fight to not miss how they and we change as well.

Every now and again, we do get away.

We pull up, exhausted, packed and prepared, to the white-ish brick house with green trim.

We unload, physically first.

The gears of running to keep up grind with the sudden slowing of pace.  We can breathe.  They know us here.  They love us here.

We can be us here.

As we unwind, we remember that our identity isn't in what we can do or what that (albeit important) piece of paper says we are capable of doing.  It's much, much bigger than that.

The nourishment we find around the table is certainly not limited to food.  That's just the beginning.

We air our wounds and show our scars.  The way we're able to converse... discuss... share... in a way that cuts through the noise to the heart of living.  The hope of life.

We're able to play and laugh with abandon.  The task list remains on the table at home.  And home is good.  The tasks are good.  The struggles are good!  But if you can get it, restoration through rest from that hamster wheel of tasks is so very nourishing.

Through being family, we remember the even greater tie that binds.

Eventually, not so long from now, we will go back to all those good things that life requires.  But we will return with our ears perked, eyes afresh, and with a renewed sense of purpose and hope.

Thanks be to God for Mom and Dad, Grammy and Grampy.

Now if you'll excuse me, I have a blonde, curly haired boy who needs to snuggle and watch Kipper.

Wednesday, March 6, 2013

Bolting and Psalms

We sat, just as we always do, right outside the BARC.  It's your usual university hallway except for a few chairs added for us, I assume.  You know, us.  The US who bring our kids here twice a week for social circles and ABA therapy.  It's nothing like what I'd think of as a waiting room type area.  There are often classes in session just a few feet across the hall.  We do our best to keep quiet, but the kids are so comfortable with this place that it gets harder and harder to remind them that it's a school for big kids, not a playground.

This last time, the littles were doing great.  They played with play-doh, read books, and were generally pretty great, especially considering they're three and four years old.  Then it was time for Ryan to emerge.

I have to tell you, there are some things I just deal with for too long.  This is one of those things.  For a few weeks now, I've allowed him to tear off without slowing as he comes out of the BARC, straight down the hall, around the corner to the window.  The elevator is a short jaunt from there.  It scares me that he might get on the elevator, go down the stairs, or run into someone.

He's just not a little bitty kid.  And the last couple of months, he's filled out a bit.  He's probably close to an eighty pound tank of running, giggling kid.  I keep forgetting that he's going to run out giggling.  I keep reeling in the panic every time, just trying to get a chance to talk to his therapist for just a second before I chase after him.

See, it's not just Ryan.  There are these two adorable babies with me who love him so much that no matter what I do or say, Ryan is the coolest.  They would literally run straight after him into traffic.

This time, as the time ticked down, I remembered.

As I saw him coming out, I quickly reminded the littles to stay seated.  I got up and just barely caught him, not with my hand but my arm.  He didn't stop easily.  And when he did, he started screaming and fell to the ground.

Reaction or response?

This time, thankfully, I responded.  Calmly I reminded him to please get up and come with me.  I repeated this several times to no avail.  He just. screamed. louder.  He just hit harder.

In a swirling torrent of screaming and hitting and his yelling NO! at the top of his lungs, we finally swirl out of the hall and into the elevator.  He nearly didn't stop caterwauling and fighting against me long enough to go downstairs.

Once on the elevator, I placed myself between the kids and the doors.  It's recently hit me that I need to ride elevators with my back to the door to prevent him from bolting.  A reminder, a bit of a verbal social story later, and we're off to the van somewhat calmly.

Back to the van, it's all about the iPod.  No, you yelled and hit.  I'm sorry. No i-Devices.

This is what I wish you all could see, but at the same time, I hope you never do.

This is why my heart aches to help him.  To find the cause, the source, the root of all this pain for him and teach him to deal with it.

The thing is, I know why he screamed.  I changed something.  I allowed him to build up a routine of running to the window, then when I finally remembered in time to do something about it, the change threw him like a high bounce ball in a concrete room.

So I caused it, I suppose.  But he had to be stopped, and the truth is you never know for sure how hard it's going to be.  There have been times that I thought surely a situation would sink him and it was fine. But then again, there have been times that I thought surely a situation would be something he could thrive right through when the opposite became true.

We have to measure what we're ready to do when we decide to do something.  Are we ready to handle a screaming meltdown at the restaurant because they're out of ice cream?  It happened this weekend.  They were out.  They usually have it, but this time they were out.

The truth is, no matter how carefully we plan, we're not in control.

Today in preparation for bible study tomorrow, I caught this little gem:

I will bless the Lord at all times;
    his praise shall continually be in my mouth.
My soul makes its boast in the Lord;
    let the humble hear and be glad.
Oh, magnify the Lord with me,
    and let us exalt his name together!

Not just when I can.  Not just when it's all going my way.  There is something in which to rejoice at all times.  But what?!  Oh my word!  You have to be kidding me.  While my child is screaming at me for what seems like an hour?!  While I'm dragging him, kicking and screaming, out of a very quiet, very acoustically live building?!  REALLY?!

As usual, I needed to be patient and read on... 

sought the Lord, and he answered me
    and delivered me from all my fears.
Those who look to him are radiant,
    and their faces shall never be ashamed.
This poor man cried, and the Lord heard him
    and saved him out of all his troubles.
The angel of the Lord encamps
    around those who fear him, and delivers them.

Then I got around to here, and oh, I had to tell you about it... 

The eyes of the Lord are toward the righteous
    and his ears toward their cry.
16 The face of the Lord is against those who do evil,
    to cut off the memory of them from the earth.
17 When the righteous cry for help, the Lord hears
    and delivers them out of all their troubles.
18 The Lord is near to the brokenhearted
    and saves the crushed in spirit.

You see, Psalm 34 reminds me that he hears.  In his time, and in his way, my tears are not wasted.  My son's tears are not wasted.  There are times when I'm not sure I feel like rejoicing.  But eventually, I'm led back to something that gives me peace.  Words that feel like a hug from God himself.  

So we'll go back Friday.  Not only that, but I'll keep holding our kids accountable, even when that assures my listening to screaming. 

Keep going.  

He hears.  

Thanks be to God for yet another word-hug! 

Monday, March 4, 2013

In Case You Were Wondering...

Every day we do life our way.  We don't realize the ways we've adapted, morphed our routines and patterns into something more Ryan-friendly... or our brand of autism friendly.  Sundays are no exception.  We work together to make it out of the house by 8:15 so that we make it to CE by 9:15.  Not that it happens all the time, mind you... but we do our best.

I lay out the kids' clothes the night before, and while I'm in the shower, Eric dresses the boys.  He's our morning person, up and showered before everyone. After talking through the mental checklist, consisting of everyone's breakfast to eat on the way, bibles, pull-ups, wipes, drinks, and a "juicy red sucker" for Ryan in church, and "mommy's iPod with headphones" for him if we need to go somewhere, we're on our way.

In the halls, we keep moving.  We wave to friends and keep walking.  If we were to stop, Ryan would not.  If we attempt to take his hand, he will start squirming and crying.  There is something about this that he just can't stand.  If people try to stop, I just smile and say, "sorry, my train is moving!"  Anyone who knows Ryan or has seen us knows how things are and understands.

Then, if Ryan has been good in CE and church, we go to the kids' favorite fast food joint, which Ryan has lovingly dubbed "star."  Since we do this so much, the employees have come to recognize us.  When we're gone on a Sunday, they even mention they noticed our absence when we get back!  

And that's the end of the safe places.  The rest is a toss-up.  It's getting to the point where the chance Ryan will melt down in any given store is greater than the chance he won't.

Here's where I have to make it clear that we don't expect anyone to feel sorry for us or solve our problems.  That is never our intent.  But there are ways that folks feel they should say something and add, intentionally or unintentionally, to the frustration of what's already going on.  In an attempt to bring these to light, a Facebook page called The Aspie Mom shared a list of things one should never say to an autism parent.

I reposted, thinking that maybe one person would read it that hadn't realized and would care to change how they'd react.  I did worry that someone would have reacted this way out of ignorance and would feel horrible for doing so in retrospect.  If you're wondering, I haven't heard any of these lately... so if you've visited with us lately and think you might have done this, no worries.  If you have in the past, you're forgiven.

The thing is, I'm not sure anyone realizes the WHY of these things hurting.  Just in case you were wondering, here you go... with many thanks to "The Aspie Mom" for posting the list.  And while we're on the topic of disclaimers, these are my heart's answers to these questions and comments... not necessarily the same as anyone else in a similar boat.

He looks normal.  Are you sure he has autism?  
Why, yes, I am.  While it's great that you think my boy looks "normal", it's still hard to hear you question his diagnosis.  This one, at this point, pretty much rolls off my back.  But when a parent just received a diagnosis, too many of these can cause claws to fly out.  If you knew how many hours of paperwork and years of waiting in agony to get a diagnosis so we can get help, you wouldn't flippantly question.

Is your child retarded? 
No.  If this word is still being used to describe folks with special needs, it's time to realize that it's antiquated and is an insult at best.

Wow, how do you do it?  I could never deal with that.  
This one doesn't bother me so much.  I'd rather it wasn't spoken in front of my son, who may have verbal communication issues but has ears and a heart that work just fine.  The only mental answer I ever have for this one is "How do you?"  Everyone has a lot in life.  This just happens to be mine.  "By the grace of God and the skin of my teeth" is the most accurate answer I can give.  And honestly, that's the answer most folks with completely "normal" lives have this answer at one time or another.

I would never allow my child to act like that. 
Wow.  Okay, let's assume that control isn't an illusion and that you can control your child's behavior.  Do you honestly think I choose to watch my son beat his head and scream? No.  I don't.  If you have been blessed with children who always obey, never disobey, and have never and would never do anything that could possibly bother anyone else in public, great!  Please be gracious and realize that you have been blessed... and that but by the grace of God, you could be right where I am.

It's just the way you raised him. 
Oh, I've heard this so much.  So very much.  In so many different ways, folks have dismissed his behaviors as a lack of parenting on my part.  Suggesting that we just completely botched the raising of our son does not "fix" anything about him, nor does it make us feel better.  But if you're saying this, chances are you're not worried about how we feel.

If you can't control your child keep him at home. 
So you're offering to buy my groceries, run my errands, and keep me locked in my home with my child 24/7?  I'd love that!  I really would.  I would love to stay home with my kids all the time.  But all kidding aside, if this is something you'd entertain leaving your lips, I'm impressed that you read this far.  You have no idea how much it takes to even convince myself to leave the house some days.  You have no idea the temptation I have fought with every fiber of my being to completely shut out the world to keep him... and my other kids... and us... from the hurt of the world.  

You're lucky. It could be worse. 
Yes, indeed!  But consider, please, the next time you're having what you are sure is the worst day you can imagine, my saying this to you.  There is a time and a place for such statements, and these things are almost always meant to be spoken to oneself.

He/She just needs some good discipline.
Oh dear.  No.  The only reason he's out in public without wetting his pants... the only reason he speaks at all... the only reason he can stand anything in this world for any amount of time... is because of disciplined, love-driven parents who fight everything from insurance companies, laws, to themselves to do what they can for their child.  More discipline than you realize is in place here.

Stop using autism as a crutch.
Ouch.  Just ouch.  No one who truly deals with autism is using it as a crutch.  It's not a fashionable diagnosis.  It's not a trend.  It's not a diagnosis they "hand out to everyone with a problem."  Again, if this is something you're saying, building us up must not be your goal.

It's God's will and he will only give you what you can handle.
Another that doesn't hurt so much... but it does have theological issues.  Yes, everything I go through is God-filtered.  But at some point, this starts to sound like "stop whining." If you could see the amount of times I've fallen to the floor in desperate, exhausted, confused tears because I didn't know what to do next, suggesting that I can simply "handle it" might be something you'd think twice about.  Tweak it a bit, maybe... and realize that if you tell them that God will give them what they need to handle it, something you can do quite outside your comfort zone may be that something they need.

Why did you have another one if your oldest has autism? 
It is just not your business.  It's just not.  This is like asking your friend with brown haired kids why they had another if the first one has brown hair.  Or why they don't look in the mirror before they leave the house.  It's just not anyone's business but their own.  My answer for this?  I wanted more kids.  There you go.

You should try this.  I heard someone was cured this way.
Um, thanks?  And very few of us will do anything other than smile and nod at this one.  So very many nice, well-meaning folks say this.  Please know that especially at the beginning it's horribly overwhelming to have everyone's "fix it" ideas thrown at you.  Most of these things require ginormous, costly life changes that not everyone is ready to make.  If you must make a suggestion, do your homework first.  Be prepared to do part of the footwork.  For example, if you're not willing to cover half the cost of the new diet and teach this person to cook all the food they need for it, and get their child to eat it, please don't suggest it.

You should probably send him away to a home. 
The thought of this makes my blood run cold.  This is my baby.  Oh, please never suggest this.  I fight every day to help my boy become a positive, productive member of society.  I might as well cut my heart out and send it too.  This is one that has been suggested to me by someone I had just barely met.  And by barely met, I mean "Hi, my name is... and I think you should."  Except there was no "Hi, my name is."

You need to potty train him now. 
This is a fight that very few in the autism community have been spared.  I am relieved and grateful that my boy managed this, with few accidents, by six.  It is a long, hard road.  I can guarantee you they're trying.  It is just hard for these people to do!

You just need to start being a better parent. 
Well, if you're suggesting any of the above, isn't it a given that this is how you feel?

Just leave him with me for a week.  I'll straighten him out.
Again, this is dismissing years of doctor visits, paperwork, observations, and agony.  To suggest this is to suggest that you know better than everyone we've ever worked with.  I just don't think so.  Even as a joke, please don't.  If you're serious about this, I can assure you that it would work the other way around... and that's if I would allow it.  Which I wouldn't.

Now for one of my own... a sentence starter I've come to dread...

Why don't you just...
"Just" implies that it's simple.  It's not.  There is no "just" doing anything.  Everything is filtered through the set of things we've learned about Ryan and who he is.

In every one of these comments, there is a lack of trust that we are doing our best.  There are people who wouldn't mind a lot of these questions.  We are all different!  Just as there are a few that don't bother me as much, there are probably parents out there who might not mind educating anyone who suggested one of these.

I wish I could say that I've never experienced any of these.  Most of the comments I've received have been from people who either thought they were helping, educating me, or sharing vital information.  Please remember that we're human.  We have feelings.  Before you speak, consider asking yourself if it needs to be said, if it needs to be said by you, and if it needs to be said by you right now.

On the other end... to all of us in the boat, not looking from the shore... remember to be gracious.  We are not excused from kindness and patience, grace and mercy.  If you have an opportunity to educate someone kindly, by all means go for it!  But please consider the three questions in the paragraph above before you speak.  And consider that you are an ambassador for us all, and that rudeness and pointed answers spat out of a hurt heart may do more harm than good.

More than anything, we're all human.  We all have feelings. We all need grace and mercy, and we all need to be trusted that we're doing our best every day.

As always, thanks for listening.

Thanks be to God for his grace and mercy, and for the diversity that teaches us the need.

Friday, March 1, 2013

Another One Bites the Dust

About three weeks ago, our wonderful resource teacher shared with us that she'd found something that helped stop or at least shorten Ryan fits.  She shared it with us and gave us what we needed to implement it at home.

Thankful for something that seemed to help calm our guy, we jumped on it.  It was simple, something we could do with some effort.  It was good for us, too.  It gave us a way to respond that was easier for us to handle; easier for us to keep calm as well.

We've been given so many of these types of ideas that I've lost count.  Every time we are appreciative and implement whatever it is to the best of our ability.  For a while, the new trick will work.  But almost as quickly as it begins to work, the helpfulness dissipates.

This last trick involved holding a sign that said, "We only hear kind words with talking voices."  Every time he started to scream or melt down, we were to hold this sign and ask him to read it.  You'd be amazed how well it worked for a couple of weeks!  Soon as he saw the sign, he'd read it aloud and stop.  Ah, lovely.

After a few days, he started to yell "NO KIND!"

Then, as I goaded, pleaded, bribed, and otherwise desperately finagled him into writing his spelling words, I finally got the note in his planner from school.  I knew it was coming.  I'd hoped this would be the answer to helping him calm himself.  But no, it was only a short reprieve.

And now his dear, sweet resource teacher has joined the ranks of we who don't know what to do now.

This does not mean that she has given up.  I know that she does her dead-level best with these kids, that she loves each of them and will do whatever it takes.  The problem comes when you don't know what it takes.

It's not enough to control the behaviors.  It's something that we have to get to the core of somehow.  To find the source of his frustration, anger, confusion.  Something has to be causing it.  There must be something we can do.  There must be SOMETHING.

I want to know what makes him scream in the middle of perfect quiet, then say, "don't scream."

I want to know what makes him pretend to burst into tears at one particular intersection on the way to school, only to immediately go back to calm.

I want him to be able to tell me, "Mom, I can hear the lights in that store humming and it's driving me bananas.  If you make me go in there, I'll likely lose it."

I want to hold my screaming, hitting, frightened boy and tell him that mommy will fix it all.  But I can't lie.

Mommy can't fix it all.  Mommy doesn't know the cause of it all.  And frankly, the cause being "autism" isn't comforting a bit.  The diagnosis has served as a ticket to services to help us help him, but it also hangs in an ominous cloud over our heads wherever we go and in whatever we do.  It's in all our plans, from taking a family vacation to going to the corner store or playing in the yard.  It plagues our boy, and since we love and adore our kids, it plagues us too.

Navigating in this journey is tricky at best.  This morning, Mom and I decided that it's like trying to learn to swim in a hurricane with someone shouting instructions from the shore.  There is help out there, but good luck getting to it.  There is an answer, somewhere... there has to be... but it is vague and more elusive than the proverbial needle in a haystack.

In about an hour, mother and I will load Richie and Maelynn into the van.  We'll pull up in front of the elementary school, and out will come a bouncing, humming, stimming little boy who knows that Friday is "NO homework" and that tomorrow, as I told him this morning, "School is on a break."  I'll drive him the 50 minutes to ABA at Baylor, where he is working on transitioning calmly from one activity to another.

We'll all wait in the hall, with the kids playing with the things I've packed in what we call the activity bag.  On the way home, he'll yell "no homework!" at least once from the back seat.  We'll have pizza and movie night, and hopefully there will be no melting down.  Last weekend, he screamed at me for 30 minutes while I tried desperately to remain calm, all over a trip to the park.

I don't know the answer.  I don't know that he'll make it the next few hours without screaming and beating his head, dropping to the floor to kick.  I don't know that he will make it without another one of these episodes this afternoon and evening, and I don't know that he's made it without one at school today.

But I do know that I will hug and kiss him goodnight, if he will let me.  I know that I will keep feeling around, trying to find a way to help him overcome.  To be happy.

In the meantime, this is what helps.

"Fear not, for I am with you; 
be not dismayed, for I am your God;  
I will strengthen you, I will help you,
I will uphold you with my righteous right hand."  ~Isaiah 41:10

Thanks be to God for his hugs in print. 
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