Tuesday, June 28, 2011

Travel Mercies

Time off from work and school, for us, means travel. It means family, catching up, reminiscing, and generally being together.  It means hours in the van, water, ice cream, cold drinks, laughs, snapset pools, rickety lawn chairs, bubbles, living out of suitcases, and being a bit nomadic for the purpose of retaining our kids' and our relationships with family, especially mine.  Since I'm from eastern Oklahoma and we live in central Texas, we can't just spend the weekend at my Mom's.  Once we get here, we're here for a little while, usually. 

Did I mention my mother is a very patient person?

My Mom's house... Granny's house, to the kids... is someplace we all love to be.  It's not quiet, especially not when we're here.  It's not huge.  It's not fancy, although we've worked to restore it.  There are four small dogs who live here, and they take their positions as the alarm system seriously.  Not a leaf blows in the yard that we don't hear about!  And since Mom lives on the corner across a small street from the schools in town, you can imagine how exciting it can be.  Not that she intended to have four dogs... one is inherited from Nanny, and one is my sister's dog.  They're good dogs, but you add our 40 pound Australian shepherd to the mix, and it's exciting.  The house isn't large, but it isn't tiny.  It is old, and there are always challenges with an old house, especially when you suddently add five people to the mix. 

Take that and add the issue of figuring out where Grandad is going to live and how to deal with and even find out what his issues are, traveling for my sister's wedding (which was wonderful), and just he ins and outs of every day life with three adults, three small kids and five dogs, and it's very exciting.

There is something to be said for love.  The love and desire that conquers these challenges, issues, and excitements.  There is something to be said for the inner pull that brings us together.  All I wanted as a child was to be with my mother's family. Not because they're perfect.  Not because everything is easy, or because of anything other than the fact that I love them.  You know my mother is important to me, to say the least.  My great-aunts are right up there with them.  Technically Nanny's half-sisters, they're the first people I remember (other than Mother and Nanny) who I remember going out of their way to make me feel special.  They're funny, sweet, caring, and loving.  They love to look at old pictures and share their memories with me.  They are treasures, Gladys Mae and Dixie.  And now that Nanny's gone, they're ever so much more important. 

To this point, I'm not certain, but I think our family has never dealt with a person in our midst with special needs.  Especially not a hidden special need.  We've had friends with issues, friends of friends with issues, but never one of our own afflicted, unless you count Alzheimer's and other forms of dementia.  So take this family who thrives around a kitchen table with drinks, yummy food, old stories and laughter, and add someone with a social disorder. 

Makes you feel every laugh, hear every word, and savor every moment with a gratitude I cannot explain.

I like to think our family is a true American family.  Bring us your tired, your weary, your worn... we'll feed you and make you laugh.  The funny thing is, I had no idea I was going to be more on the receiving end of that mercy and grace than I ever realized. 

This weekend was my sister's wedding in Eufaula.  I'm so proud of her.  She was the most beautiful bride I could have imagined.  She married a sweet, wonderful young man who has a great name (his name is Eric... or "too") and she had a beautiful wedding.  Our Richie was the ring bearer.  He was so stinkin' cute in his little tuxedo that matched Bree's Eric!  But he would not stand still.  No amount of "pomatoes" made him stand still.  He wandered up to Bree and Eric at one point, wandered around the stage and into the choir loft.  My daughter, during the procession, wandered up and started helping the pianist, who was most thankfully my dear mother in law!  Ryan, ironically enough, did swimmingly.  I was so proud of him.  But this time, I was more proud of my sister.  Through all my kids' antics, she smiled and laughed.  She was happy and pleased as punch just to have them there.  Not a bridezilla bone in her body.  That's our girl!

What happened before the wedding, while I was at the church trying to help with last-minute details, I didn't find out until later.  Eric, Mother, my great-aunts, Mae and Ryan were back at the hotel, trying to get dressed and ready for the wedding.  Apparently, Ryan gave them a run for their money.  Ryan loves doors.  If you don't stay on top of him, those doors will be banged as he flaps and hums excitedly, stimming with all he's worth.  Someone literally turned their back for a second and Ryan flung open a tall, mirrored closet door.  Ryan survived, the door did not. 

There was no anger, no backlash from my Mom or great-aunts.  They simply called the front desk, had someone clean up the mess, and while they did tell me what happened, it wasn't in a "you really ought to teach that kid some manners" kind of way.  I must add, the Best Western Eufaula Inn was ADORABLE about the whole ordeal.  Later, when the kids began eating their promised Happy Meals from that place with the crazy clown, Ryan didn't have ranch.  I asked, they didn't give it to us.  We were in Mom, G'mae and Dixie's room for this meltdown.  Eric scrambled for ranch or catsup, I dealt with the meltdown.  They didn't ask us to leave, or ask why we "didn't just do" so and so to help him.  They didn't understand.  They didn't know what to do or say.  But they did let us stay, treat us like they always have, and encourage us to keep going and know that they think we do a great job. 

Yesterday, when Mom and I took Mae and Ryan to get groceries, I wanted to stop at a specialty type of store (the Chicken Store... it's pretty cool) that only has frozen meat, mostly chicken, to fill out some of the holes in our menu.  Picture a room with a tile floor, smaller than a convenience store, with nothing but open-top refrigerated coolers lining the room.  Ryan wanted to run around the whole time.  Run, stimmy-yell, beat his chest... oh my word, the whole nine yards.  Then, miracle of miracles, he ASKED TO GO TO THE BATHROOM!  I was so excited.  But I still had to get what I needed, and he was still melting down.  So with the help of Mother, I managed to get a couple of things and shuttle him, screaming, to the van.  We tried another place next door, but both stores had posted a "no public restroom" policy, and being myself, I didn't want to buck that. We made it to a convenience store where Ryan finally got to potty.  One neat thing about that experience?  Ryan was quiet enough as I was checking out that I was able to explain a little of his behavior and why to the lady behind the counter, who was a young mother herself.  She was visibly uncomfortable, but smiled at Ryan and told him she liked his glasses.  She was sweet and calm, even thanking us for coming in.  And Mother?  Encouraging to me, never suggesting that I try this and that, or that it would have gone much differently if I had just done it this way or that. 

These are not earth-shattering experiences... or are they?  These seemingly simple acts of grace and mercy are, whether we know it or not, Christlike in themselves.  It's in these times, when faced with and emotional situation, when we are forced to choose in a split second between a reaction or a thoughful response.  Not everyone can always avoid reacting to the panic/anger/fear based feeling that assaults our hearts in these times.  But we can choose to make it our self-tradition to respond in love and thoughtful Christlikeness rather than reacting out of annoyance or unfairness.  The chain-reactions that occur in these situations determine our legacy.   They determine for what we will mostly be remembered.  The lady behind the counter may or may not have known that I was doing my best to respond to Ryan, not react.  My Mother, when I was a child, may or may not have realized I was watching as she extended grace and mercy to others, but I was.  She was, when her mother did, and her mother was, when her mother did.  And I'm still paying attention when she extends grace and mercy to my autism-meltdown roasted, weary self.  I am so grateful to belong to a family with a heritage such as this... a legacy of acceptance and love. Of caring and overlooking.  Of sticking together, of toughing it out and figuring out a way to laugh through the pain.  And that Christlike love of each other is a legacy I hope I will keep. Autism, Alzheimer's cancer, death, times of less and times of frustration and unfairness and through our differences... we're still family, we're still friends.  More than any thing my family could give, this is what I treasure, and all the more as I age, not just as a mother, wife, mother of a special needs child, but as a sinner saved by grace.  I am imperfect, our children are messy and noisy, but Eric's family and mine still love having us around.  And I am so grateful.

Legacy- Nicole Nordeman
I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to You enough
To make a mark on things?
I want to leave an offering
A child of mercy and grace who
blessed your name unapologetically
And leave that kind of legacy

Saturday, June 18, 2011

They want to be just like you.

Have you ever packed for a trip with five people?

Have you ever packed a trip for five people with them all in the house?  Gets interesting.  The saving grace for me is my husband picking out his own clothes.  A guy who helps.  Who knew?

Single mamas, you have my utmost respect.  Mamas whose husbands are out more than they're in-town, you do too. I do not know how you do it.  I don't know how mine did, and there was just one of me!

When we're getting ready to go somewhere, I almost always do all the packing.  Since back surgery, I do the loading into the van, too.  But even without back surgery, there's always something Eric needs to be doing.  Most guys, I'll bet, would do their own thing without a thought to their wives.  My husband is the opposite.  He wants to do for me, then do his own stuff.  The only problem is that would leave him with no time to do the things he needs to do.  Pretty cool, huh. It's my responsibility as his wife to NOT take advantage of this, since I don't want to be disrespectful.

No, I really don't.  Not kidding.

I'm not into the man-bashing, war of the sexes mess so many women are.  Yes, there are differences.  Yes, at times they can be hilarious... but when hilarious turns to running over, no longer building up, and to downright disrespect and tearing down, the differences are no longer worthy of jocularity.  There's a line.

At this point I have to admit I'm not into the "dad's right even if we go off a cliff" thing.  Marriages only work when both parties are interested in the whole bible and all its truths and principles, and not just the "wives obey your husbands" part.  And it is in there, sisters.  I'm not throwin' you under the bus, girls.  Hang with me.

Check out 1 Peter 3.

1Likewise, wives, be subject to your own husbands, so that even if some do not obey the word, they may be won without a word by the conduct of their wives, 2when they see your respectful and pure conduct. (ESV)
This is one a lot of men sadly like to throw around, showing their ignorance of the rest of the passage.  See, the respect we are to have for our husbands should flow from the desire to first obey God, and then respect the husband who loves us.  This is where it gets easy for me.  Not all the time, mind you.  There are times I'm not in the mood to say "yes, dear".  To tell the truth, there have been times when I wasn't ready to even just tap him on the shoulder and say, "Now honey..." when I didn't think he was in the right.  All that would mean I'm perfect, and we've covered that.  I'm as wretched as anyone else until you add Jesus to the equation.

The thing that makes it easier for me to respect my husband, to revere him, to obey (yes, even when I think I know better), is that my husband read the rest of the passage.  Not only did he read it, he had one better.  His Dad lived it.  His father was and is a bible he could read by the way he treats his wife and children.
7Likewise, husbands, live with your wives in an understanding way, showing honor to the woman as the weaker vessel, since they are heirs with you of the grace of life, so that your prayers may not be hindered.  1 Peter 3:7 (ESV)
Don't let the "weaker vessel" part throw you off.  Ever asked a man to open a jar for you?  Me too.  But I also feel cared for and respected when men do little things like open the door for me.  Call me what you will, I like being respected that way.  My husband opens doors for me, but he also knows I can do his job.  It's all about balance and respect.  Once, a repairman came to fix my Nanny's stove.  Granted, it was the mid to late fifties.  She asked, when the job was done, what the problem had been, expecting a real explanation.  Instead, she was told that the cord was bent, so the electricity couldn't get through. That is not respect, that's demeaning.  But I digress.

I did not grow up with men who really knew what this passage meant.  My childhood was filled with fear of men, as creatures who delight in exerting control.  Men were scary folk to be feared who drank too much, threw things, hit people, used bad language, and were just generally hurtful beings.  My father was one such man. Having demons from childhood he'd never worked through, such as an alcoholic, sociopathic father and a mother who liked to, we'll just say, "run around," he tried most of his life to fill the God-shaped hole in his heart with women, drugs, alcohol, work... anything that he thought would work.  He sought hard most of his life to be loved.  The problem with that was that people fail.  Work stops.  Chemicals eventually eat you alive.  The only way he knew to deal with problems was with fists, alcohol, and screaming obscenities.  I've heard stories.  Not only from him, not only when he was sober, not only when he was the opposite.  No one can ever know everything about someone, but I knew enough never to make him angry at all cost.  And that knowledge did not come simply from stories.

So imagine my surprise when, after a lifetime of this mess and not giving the "father-figure" types in my life much of a chance, I meet Eric.  Sweet, unassuming, loving Eric.  No, I did not say perfect Eric.  We both make mistakes.  But of all the men roaming the earth, he knows how to be a man.

He may not work with his hands much, but you should hear him play trombone.  You should hear the music he writes.  You should go to a concert, marching contest, or drum corps show with him, then discuss it afterward.  It's amazing what he remembers, what he heard.

No, he won't eat at Hooters with you.  He won't go to a strip club, either.  Don't ask.  No, I did not make that rule.  He made it for himself, long ago, because he was raised to respect women for real.  Yes, I am very proud of this!  It makes me stand a little straighter, feel a little better about what I see in the mirror, and know with more confidence that he really was at work when he doesn't get home until ten.

No, he doesn't drive a sportscar.  He is proud to drive the truck he has, that belonged to my Dad (stepdad).  He is absolutely cool with driving a minivan, complete with Tinkerbell steering wheel cover and floor mats.

He doesn't make getting things past me a pastime.  He's not sneaky, he is truthful.  He is home when he has free time, ready to do whatever it is that needs doing.

Yes, whatever needs doing includes diapers.  Cloth diapers, and yes, he rinses them.  Now that he's home on vacation, he learned to wash them "so that more than one of us is doing that" in his words. No, I didn't ask him to learn.

Until he had back surgery in January, for three kids, he's been the night captain.  He proudly gets up, searches for binkies, got bottles, changes diapers, finds loveys, and rocks whoever back to sleep.

He listens, and in listening, wants to understand.  He wants to understand why I feel the way I do about things.  He wants to know what I think.

As I said earlier, he will be the first person to say I can do the job he does at school.  He will also come home and ask what to do about something when he's not sure.

He'd rather I have what I want.  He's often been caught spending his own birthday or Christmas money on something for the kids.

He gives and gives, never asking for anything in return.  He knows that a true gift has no price tag.  No strings.  No guilt offering ever required.

He forgives me when I'm cranky, cantankerous, and downright ugly.

He struggles alongside me.  Not in front of me, not behind me.  Beside me.  Sometimes I may need him to step in front... but if he does, he defends me in a Christlike way.  Through autism, through parenthood, sickness, lack of everything... he's right there.  He doesn't slink away.  We deal with it, whatever it is.

He doesn't embarrass me for fun.  He does make fun of me when it's called for!  I'd go nuts without a sense of humor.

I could go on and on.  For these reasons and infinitely more than I can list, I'll be proud to have our boys be just like their Daddy.  Yes, he makes mistakes.  But he's the best father I could ask for to raise our children, and he's a way better husband than I could have dreamed.

This Father's Day, I thank the Lord for Eric... and for his Dad, too.  One great Dad and believer begat another.  I'm so thankful for the legacy that will surely pass to our boys and our girl.  The kids may not say it, honey... but every time they pretend to put on your back brace, clunk around in your shoes, or repeat what you say, they're saying "I want to be just like you."  Thank you both for doing your best to be godly men, fathers, and husbands so that we can be happy that the kids want to be just like you.

I Want to Be Just Like You
-Phillips, Craig, and Dean

He climbs in my lap for a goodnight hug 
He calls me Dad and I call him Bub
With his faded old pillow and a bear named Pooh
He snuggles up close and says, "I want to be like you"
I tuck him in bed and I kiss him goodnight
Trippin' over the toys as I turn out the light
And I whisper a prayer that someday he'll see
He's got a father in God 'cause he's seen Jesus in me

Lord, I want to be just like You
'Cause he wants to be just like me
I want to be a holy example
For his innocent eyes to see
Help me be a living Bible, Lord
That my little boy can read
I want to be just like You 
'Cause he wants to be like me

Got to admit I've got so far to go
Make so many mistakes and I'm sure that You know
Sometimes it seems no matter how hard I try
With all the pressures in life I just can't get it all right
But I'm trying so hard to learn from the best 
Being patient and kind, filled with Your tenderness
'Cause I know that he'll learn from the things that he sees
And the Jesus he finds will be the Jesus in me
Right now from where he stands I may seem mighty tall
But it's only 'cause I'm learning from the best Father of them all

Monday, June 13, 2011

The words I fear the most...

I just don't know.

I really don't. 

As Ryan's mother, I'm expected to be able to explain him.  And I can, to a degree.  But there are things I cannot explain.  He can play "Twinkle, Twinkle, Little Star" in three different keys on the piano, and even learned the tag that is at the end of that cute little melody on one of our electronic baby pianos.  Learned it by ear.  But can't answer yes or no questions.  He can play a double stroke roll on a bass drum, but can't hold a pencil correctly.  We caught him, quite by accident, reading a whole book the other day out loud.  But when you ask him to do it?  Well, if you do that you'll likely be screamed at or just ignored... and ignored is at best. 

He has learned so many phrases from apps on the ipad, from movies, from little kids' shows, but "stop it" somehow eludes him when his sister pats his back.  He wants to be hugged tight by me or his daddy, but can't stand his sister and usually Richie to get on the same couch as he is.  He would walk straight into traffic, given the chance, but the sharks on Finding Nemo make him hide behind the couch.  He begs us to run the vaccuum, but then hides on the couch and watches from afar. 

When the notion strikes him, Ryan screams, squeals, and gutterally yells, contorting his face to match his frustration.  He has practiced almost to an artform the art of self-injury.  And thanks a lot, Nemo writers, for putting in the movie times when someone is injured and says "ow".  He smacks himself (even in a good mood) just to say "ow!"  Usually I can be patient and help him... to say "you're okay" calmly enough that he can stop... but other times he catches me so off guard... it frustrates me that I'm not used to it.  I guess I am to a point, but not enough.  I wish I could say I never raised my voice back, but... and I know it's awful... I can't. 

It all comes back to fear.  Fear that I can't handle this, or that the kids won't have a great time growing up.  I want them to have fun, to be happy and feel safe.  When you're driving down the road in complete quiet, or having quiet conversation, and the van is instantly flooded with a blood-curdling scream from the back end of the van, it's hard to stay calm.  And what do you do, other than ask what's wrong, ask what he needs, ask him not to do that... askaskaskaskask... and usually with no answer.  Or the answer is what you said, verbatim.  Even through tears.  And it's many, many times a day, and not just in the van.  Sometimes there's an obvious cause.  Many times, maybe an air molecule frowned at him... I have no idea. Therefore I cannot fix it, help it, and certainly cannot control it.

My mother, for as long as I can remember, has been my greatest comfort with skin on.  Hurt, scared, angry, sad... even the thought of my mom calmed me.  We're still very close.  I guess I wanted... no, expected... that I would be the same for my children.  But sometimes it just seems like he'd rather I went away.  Give him what he wants, and back away, thank you.  

 "Life here in the land of autism has forced authenticity upon our family."  As I read this in Diary of a Mom, I realized how right Jess is.  We are forced to the end of our ropes, forced to our faith, forced to truly rely on the knowledge of the character of God.  To cling to the truths we've known.  Remember that poster with the kitty hanging on to something... was it a branch, the handle of a basket, I can't remember... that said "Faith isn't faith until it's all you're holding onto?"  We're at the point where faith is having let go, been caught, peieced back together, and put back enough to know that it will happen again.  And each time you can hang on a little tighter, a little longer... but still fall and know a little quicker that it'll be okay.

"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." (2 Corinthians 12:8-10)  Never do I come to the cyber-paper thinking I have it figured out; nor am I naive enough to think that because I have strung together words that explain how I get through it mean I've figured a way around my weaknesses.  But the autism life has a way of stripping away the layers of uselessness, leaving you standing wherever you are, weaknesses and soul bwhether you like it or not.  The trivial seems more trite.  The surface-level unbearable.  Truth is a must, honesty a necessity, not merely a "should".  Autism in your family will force you to put feet to the things you profess to believe; to truly live by faith.

By Faith

By faith we see the hand of God

In the light of creation's grand design
In the lives of those who prove His faithfulness
Who walk by faith and not by sight

By faith our fathers roamed the earth
With the power of His promise in their hearts
Of a holy city built by God's own hand
A place where peace and justice reign

We will stand as children of the promise
We will fix our eyes on Him our soul's reward
Till the race is finished and the work is done
We'll walk by faith and not by sight

By faith the prophets saw a day
When the longed-for Messiah would appear
With the power to break the chains of sin and death
And rise triumphant from the grave

By faith the church was called to go
In the power of the Spirit to the lost
To deliver captives and to preach good news
In every corner of the earth

We will stand...

By faith this mountain shall be moved
And the power of the gospel shall prevail
For we know in Christ all things are possible
For all who call upon His name

We will stand...

Words and Music by Keith & Kristyn Getty
& Stuart Townend  
We cannot see the end of this.  But we choose to "hold unswervingly to the hope we profess, for He who promised us is faithful!" I was thinking this morning on my run about acceptance... and the more I thought, the more I dream of a place where not just the outward is looked past, but the inward... I dream of a place where all we can see in each other is what God sees through the wondrous filter of Christ... past our inner failures, inadequacies, and downright ickiness.  And such a place exists... it's called heaven.  Until then, we will stand for our children, we will advocate, teach, drive them to therapy, adapt for them, and make time to simply enjoy them.  Anything else would be a waste. We will fail, but we will try again.  We will stumble, but we will stand again. 
Nemo's over, and Ryan is dancing in his sweet way to the end credits.  He's already said "well hello star" and "goodbye star" to the starfish on the screen... And now, in whale, he's asking for a brown cookie.  So if you'll excuse me, I've fallen several times today and stood back up, and now I'm going to get my kids a cookie. 
If you haven't heard it before, thank you for joining me through this journey.  I appreciate you more than you know. 

Saturday, June 11, 2011

Tardy Tales of Day Camp 5

I confess... last night, by the time we got home, I just wanted to curl up in my husband's arms and catch up on some youtubed TV.  We let the kids, who were equally as exhausted, pretty much choose whatever snacky for dinner because we'd had an awesome and somewhat late lunch.  We watched Thomas, played VSmile (so funny... graphics are a step up from NES and the kids love it), and just enjoyed being home.  We had plans for today, but it was one of those times when you have to decide between schedule at all cost, or sanity at all cost.  Our choice is apparent, I betcha.

Yesterday as we started the 45 minute trek to Waco, I told Eric I wasn't sure this week was the right thing to do.  He quickly reminded me that, although we don't hear one word from Ryan about camp (or much else for that matter), giving him the opportunity to be in a different environment and acclamate to a different schedule and kids with the training wheels of trained individuals is priceless.  We knew he was not only safe, but the people who where there understood his issues (just understanding that, yes, he may be a beautiful, normal-looking child but he DOES have autism can be a challenge for some) and were able to work with him.  Priceless.  Truly priceless. 

You know what else is priceless? 

When we initially looked at this week, I was concerned about the amount of time to kill around Waco.  We knew it would be time to eat when we got out, and that we had that covered all but two days, and those days we'd manage.  But the time.  Oh dear.  Richie, Maelynn, Eric and I had to do something with that time!  This is where I'm so glad I was raised the way I was.  So grateful for my Mom and Nanny.  We had a wonderful time with Richie and Mae!  We walked around and explored Baylor, especially the bears.  Richie loved that and the bookstore.  We found a corner with a table where we could be out of the way, and played with puzzles, colored, and had a little snack.  We found the bridge, walked it, fed ducks, and got to see three families of ducklings.  We also got to experience geese invading once they figure out you have food! 

What's the priceless part of that?  Ducks, geese, river, squatting all gypsylike all over Waco?  It was the chill-out, just go with it feel.  It was being able to relax and see the look on Richie's face when the ducks ate his bread. It was seeing he and Maelynn free to be little kids for a while, not part of a family with autism.  I was able to kneel down beside Richie and explain that if he is very still and quiet, the ducks will stay and eat our food.  If we are gentle and calm, the ducks will feel safe and let us watch them.  He was, and they did.  He was amazing. 

You know what else was amazing?  I was able to think.  I was able to remember.  It was decadent to do things at the spur of the moment, no fumbling through the picture schedule icons, no "just keep moving", no "oh don't walk by that, or he won't stop stimming".  We were able to sit by the river and watch the mallards take off, playing on the air just about two feet of the river, seemingly showing off how graceful and beautiful God made them.  As we changed diapers in the van, stopped to read memorial plaques, and pointed out cool little things to Richie and Mae, I thought about lots of random things I loved about being with Nanny and Mom.  I was able to let my mind wander to the hot summers I spent chasing Tupperware parties and deliveries with Nanny, stopping to see whatever we wanted, walk around wherever, and as she used to put it, "tromp around" in an odd shop or store that we happened to stumble upon.  I remembered the times my Mom saved to take me to the Oklahoma City Zoo, and all the laughs we shared while we checked out the animals... and she always managed to have the fifty cents to stick in one of those rattly, old machines that molded a replica of whatever animal was in the exhibit close, and holding the hot plastic statue upside down till it cooled.  I remembered how Mom and Dad always took us to the lake on Sunday afternoons, complete with burgers or hot dogs, swimming, and drying my hair by riding in the back of the truck on the way home. 

I was able to give to Richie and Mae a little of what I loved about my childhood.  I want to give these same things to Ryan, and I will continue to make attempts to do this.  He's no less important.  But in the life with autism, so many things go out the window or are adapted or put on hold to live appropriately.  So many times the littles are kept from doing things we'd have done with them because it's hard for brother. We don't put it that way, but that's the truth.  Hanging out by the river is dangerous for Ryan.  He would have been all about trying to get in the water.  When he realized he couldn't, he'd have been screaming and throwing down completely, beating his chest, legs, head... us... until we gave up and went back to the van.  And the ducks?  Psscht. They'd have been long gone.

It is more than my pleasure to care for, adapt for, and learn to love and get to know Ryan!  We love that boy like crazy.  But we have to be careful to make the littles important, too.  They need their Mommy and Daddy to love them and teach them to be who God wants them to be just like Ryan.  We'd never leave Ryan somewhere just to take the littles to enjoy something.  So this fabulous by-product of Ryan's time at day camp was just that.  Fabulous.  We missed Ryan... especially on the bridge.  We think he'd love it, and we'll have to try it someday.  But these few hours each day this week were all about Richie and Maelynn, exploring the world with Mommy and Daddy. 

Ryan?  I walked up to get him from his last day at camp, bracing for the fight inside but smiling and waving at him.  Ryan was on his tummy in a huge puddle, splashing a little and watching the ripples of the water.  He was grinning.  His two counselors, K and A, were with him.  He didn't scream when he saw me!  He did hop up and come to me... and I about jumped out of my skin!  He said "I want to go to a restaurant" in his sweet, robotic, I-learned-this-phrase-from-an-app way, then went right back to the puddle.  While I talked to K and A, he asked for the elevator a bunch, and tore away, with his hooded Nemo towel (complete with fin on top... so cute) streaming behind, to the building to see if he could get in.  Joy.  But he was happy, not screaming!  Run from me?  I can deal with that.  He wasn't screaming at me!  YAY! 

As Ryan attempted a daring escape to a joy-ride (he thought) on the elevator, K and A told me all about how wonderful Ryan is... how cute and sweet he is... not once asking "how do you do this?" or "wow... is he like this all the time?"  Nope.  All about how neat he is, at the same time as reporting to me ways they've found to help him control his stimming.  I thanked them, they thanked us for the time they had with Ryan, and said they'd miss him. 

Best part... I asked Ryan to hold my hand (after chasing him with the help of the child of one of the folks in charge) as we walked back to the van. He didn't fight or worm away.  He slipped his pruny, cold, half-wet, soft, child's hand into mine, and we strolled back to the van.  We even took a different route and talked about the squirrels on campus (who seemed to be having a convention on the steps of one of the buildings).  He told me about not touching the big red button.  He was happy. 

So yep, I'm sure now that we did the right thing with this camp.  It didn't happen the way I thought.  I'll never know, likely, what Ryan's thoughts were on the camp itself.  But God showed again that, as my precious inlaw-parents like to say, "heaven rules".  We were concerned with the cost of the week... simply the time and money... but knew that it was needed.  Again, God gives us what we need... what He knows we need... and that is always better than what we dreamed, even when we dream our best.  I don't understand why, I don't understand autism... I don't know why I don't understand autism!  I don't know why bad stuff happens.  I only know that God is God, and I trust Him.  I trust Him because He has always brought me through.  He has always been my rock, my shelter, my best friend.  My certainness in uncertainty.  My sanity in too much crazy.  I don't make this stuff up... it's for real.  The struggles are real, and the only real answers and comfort I find are in Him.

God is God by Steven Curtis Chapman
And the pain falls like a curtain
On the things I once called certain
And I have to say the words I fear the most
I just don’t know

And the questions without answers
Come and paralyze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must
On this truth that my life has been formed from the dust

God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God

And the sky begins to thunder
And I’m filled with awe and wonder
‘Till the only burning question that remains
Is who am I?
Can I form a single mountain
Take the stars in hand and count them
Can I even take a breath without God giving it to me
He is first and last before all that has been
Beyond all that will pass

God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God

Oh, how great are the riches of His wisdom and knowledge
How unsearchable for to Him and through Him and from Him are all things
So let us worship before the throne
Of the One who is worthy of worship alone

God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God

Thursday, June 9, 2011

Tales of Day Camp 4

Today, we have learned (or had forgotten but were reminded),

Ryan knows nothing of money, or its value.  It was Mayborn Children's Musem day and Ryan had to bring three bucks.  I handed them to him as we walked to meet the lady who runs the camp, and he looked at it like "what an odd, ugly combination of paper items you've handed me, mother... whatever will I do with them?"  Thankfully he handed them off when I asked him and before they were lost. 

There are lots of cheap or free fun things to do in Waco... or likely anywhere... if you look hard enough. Sometimes, these things are more fun than the things you shell out the big money for. 

Richie thinks walking over the Waco Suspension Bridge is the coolest thing ever.  We walked the length four or five times. 

Walking the bridge four or five times is not enough for Richie.  He still cried "walk ovah tha bwidge" when we left. 

Thomas loves to ride the handrail of the ramp down to the river.  Thomas is somewhat of a slow driver.

There are several families of mallards living under the bridge, and Richie loved feeding them!

Mallards like cheerios, but they LOVE Life cereal crumbs.  Especially the ducklings.  I swear I could hear the mother duck saying, "Thanks a lot, lady.  Now they'll never take their naps." 

There is a disturbingly large homeless population in Waco, and they all seem to hang out at the bridge.  Some of them even ask for money.  Goodie.  

Train exhibit at the Mayborn is equal to elevators.  Yet another goodie. 

Every camp counselor is "Miss Staci" to Ryan.  All Miss Staci's are of the utmost coolness.

When you pick up a child with autism who has been begging to see the trains at the museum, he will not be happy to see you.

Ryan loves the trains at the museum so much that he did NOT want to go home with mommy.  K tried to tell him to say "goodbye, K" and instead he said "goodbye, mommy" while he clamped onto poor K, his wiry body clinging to hers.  Not just once, a few times.

Knowing that going home with me meant no more trains today does very little to rebuild the shattered remains of one's heart and motherhood-self-esteem that comes from peeling your screaming, gangly six-year-old from the counselor who was kind enough to carry him to the van so you didn't have to drag him.  He was screaming so forcefully I knew he had to calm down or he'd puke. 

Such a fit can be over in less than ten minutes, and said child can be bouncing around, thrilled to be going to "Pizza Planet" the next minute. 

Next time, I will use the term "Pizza Planet" instead of "let's get some pizza". 

A cheap version of a slip-n-slide makes a great place to let the kiddos splash around.

A three-year-old who will do anything for a laugh can splash all the water out of one of those one or two inch deep baby pools in one flop.  Said kiddo will continue doing this, even when his brother's in the tiny pool too.

Brother thought this was cool... and it turned into motor skills time with Richie teaching Ryan to jump and land without hurting himself.  He even let Richie sit in his lap. 

The day can always turn around.  Ours did. They don't always, but today the worst of the frustration, hurt, and upset was sandwiched between the gift of a relaxed, float-with-the-wind as we get kind of morning and a great family evening outside.  We are blessed!

Wednesday, June 8, 2011

Tales of Day Camp 3

Ah, the middle.  Halfway through.  Two more days of the 45 minute drive, entertaining Richie and Maelynn on campus for three hours, then lunch, then home. 

Scratch that. 

Two more chances for Ryan to bond with other kids, interact with other kids, and for others to interact with him.  Six more hours to work on waiting... that we can't have the elevator ride all the time, right now.  Six more hours to allow him to work on transitioning, not screaming, not gutterally squealing.   

The counselors are always perfectly cool when I pick up Ryan, but today Ryan wasn't.  It was the elevator again.  They'd learned not to let him start.  It has to be purely necessity.  Very matter-of-factly, just business, go past it, stay calm.  But for some reason, this afternoon Ryan was perseverating on doors a lot.  He had fun in the water (it was sprinkler day) but as soon as he was out, not so much.  He somewhat participated in the craft, although he enjoyed painting the paper towel more than the two liter bottle birdhouse he made.  But while I tried to talk to his beloved Miss Staci, he ran the length of the front of the building (and it's a big building), and yanked at the doors, made a myriad of interesting- although disturbing- sounds.  She seemed almost stumped for the first time.  Almost. But not quite. 

After making a plan with Miss Staci, we worked on getting down the stairs.  He screamed, grunted, squealed, and threw himself down.  If I held his hand, he yanked it out.  If I held his arm, he became limp enough to fall but continued to try to yank away.  Ryan did not want to leave, but had to.  All the other campers were gone, and even the leader of the program was trying to leave.

It's so hard to focus when any of the kids are upset, but this is one of those things that leaves me lifeless at the end of the day.  It is simply impossible to explain the amount of outbursts, grunts, screams, fusses and downright fits we endure.  Just when we think it's getting better, BAM.  It's like that feeling when you're awake, and you hear your alarm clock in the middle of the day... multiplied by a billion.  You're just wanting him to calm down so we can get some lunch and go home.  No idea what the problem is.  Ask him to tell you what's wrong?  He'll say "what's wrong".  Just like Victor the engine tells Kevin the crane on one of the many, many Thomas videos... "slowly, slowly; gently, gently" we try to help him be ok. 

I want to say that it won't be this way forever. I want desperately to put a time limit on this, to say "we will have trouble to here" and pinpoint it like a map.  But I can't.  I shouldn't bother.  I should have goals, desires, and dreams, don't get me wrong, but they cannot take the place of the hope I profess in Christ.  We will continue to press on toward the calling... but the calling is not just in Ryan and autism.  It's in each other, in raising all our kids to be Christlike, loving, caring people. 

It's certainly not in treating God like a vending machine.  Put in a request, some currency (works, to some), and take out what we want.  Or think we need.

Gratitude (Again, you can click and listen on Grooveshark)
- Nichole Nordeman

Send some rain, would You send some rain?
'Cause the earth is dry and needs to drink again
And the sun is high and we are sinking in the shade
Would You send a cloud, thunder long and loud?
Let the sky grow black and send some mercy down
Surely You can see that we are thirsty and afraid

But maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

We'll give thanks to You
With gratitude
For lessons learned in how to thirst for You
How to bless the very sun that warms our face
If You never send us rain

Daily bread, give us daily bread
Bless our bodies, keep our children fed
Fill our cups, then fill them up again tonight
Wrap us up and warm us through
Tucked away beneath our sturdy roofs
Let us slumber safe from danger's view this time
Or maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

We'll give thanks to You
With gratitude
A lesson learned to hunger after You
That a starry sky offers a better view if no roof is overhead
And if we never taste that bread

Oh, the differences that often are between
What we want and what we really need...

So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today
Peace might be another world away
And if that's the case . . .

We'll give thanks to You
With gratitude
For lessons learned in how to trust in You
That we are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace

But Jesus, would You please . . .
Friends, I come to you tonight tired, weak, and worn.  I come confessing that I am not enough.  I am not strong enough, patient enough, smart enough, not anything enough to be what Ryan needs.  But I love him, and I will do what is in my power... I will do my best.  And when that is no longer enough, because it never is, and when I get tired, weary, and worn... I will give thanks.  I will give thanks and reach up, just like little Mae... just like Bree did... and He'll pick me up and give me what I need.  Not what I think I need, or what the experts say we need, or what it looks good to have... what we need.  I will pray that Ryan's fits will stop, I will ask my dear Daddy to take Ryan's fears away, his anxieties to vanish.  I will keep fervently praying that to please give us a huge breakthrough.  One fun day at camp.  One day to not drag a screaming Ryan somewhere.  But maybe not; not today.  Maybe He'll provide in other ways.

And if that's the case...
We'll give thanks to You
With gratitude
For lessons learned in how to trust in You
That we are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace

But Jesus, would You please . . .

Tuesday, June 7, 2011

Tales of Day Camp 2

This morning was much better than yesterday.  Smooth everything.  Ryan was easy, Richie was easy, and pretty, pretty princess Maelynn slept in her own bed... all night long.  The drive went quickly, and once we arrived there was plenty of time to get the kids out, Mae strollered, and even enough time to say hi to a new ASD friend.  "He's really into outer space right now, "said Mom, then she went into this awesome thing about how he likes to pretend he's this man from another planet.  Complete with names and everything.  Completely awesome! 

We got to the camp check-in point, and found K.  Ryan was happy to see them and scoot off, doing his thing.  Eric and I and the littles went and looked at the bears, who were smart to still be in their "rooms" in the habitat sleeping.  So we made a trip to the bookstore, relatively nearby.  Eric had a plan to get the boys a new book we saw in a previous trip, and Richie quickly attached to a BU, green and gold, squishy football.  After talking him into a cheaper *I mean* smaller basketball, and after some fun browsing we made our way around campus for a while.  Good thing I brought a couple of puzzles, because three hours waiting on a college campus in the heat can get a little old with two squirmy little ones.  We accidentally ran into Ryan once, but we managed to worm away with no upset on his part.  Richie, however, was devastated, like we'd separated them forever.  Bit of puzzle working and some apple juice and he was himself again. 

Went to pick up Ryan, and he'd found the elevator.  Ugh. 

Keep in mind that these are kids (masters' level students) who have studied autism, and they're getting practice in dealing with this.  Usually I'd be all "GAAAAH you let him play with WHAT?!"  But honestly, I believe they were doing what they said, which was trying to figure out a way to transition him smoothly.  This is cool... well, I think it is... that Ryan is involved in someone's learning process. 

The rest of the afternoon following this, however, not so much. 

We promised Ryan that he would have "the restaurant" for lunch on Tuesday and Thursday.  We have fabulous band boosters here, and they gave us a gift card to "the restaurant" that will allow us, if we're careful, to take Ryan to his favorite restaurant twice this week.  Honestly, if you work at it and don't mind sharing, you can eat well at "the restaurant" (aka On the Border) for cheaper than that place with the creepy clown.  They are also awesome (the one in Waco, anyway) about seating us somewhere comfortable for Ryan.  But we almost didn't make it.

On the way to the restaurant, Ryan started to scream "cheesy chippies!" in meltdown-form, complete with the chimplike beat-your-head-with-flailing-arms thing.  After pulling over in a random store parking lot and talking about how we have to give mommy a chance to drive there, we managed to make it to his beloved "the restaurant".  He did great during lunch, chowed like a big dog on his cheesy chippies, and we all had a great time.  In the two errands after that, however...

First was Mardel.  Love that place.  I needed to pick up a timer, laminate Ryan's ipad puzzle (for losing/gaining minutes on ipad... stay tuned), and just generally wanted to look for a few things. All for Ryan.  We'd use them for Richie and Mae eventually too... but for now, it's all about getting more tools in Ryan's belt.  At the front of the store, they have this cool display of Veggietales stuff, complete with the videos playing all the time, and chairs to watch from.  They also have a train table. 

How DARE they. 

I know, most kids, blah blah blah.  But for us, it's awful.  We decided to try to bolt to the back, get done, and leave.  Man, do I ever wish the Force was real.  "This is not the train table you saw.  Keep moving to the back of the store."  So Ryan thrashed.  And screamed.  And even brought out the yelp.  I can't describe it, can't describe the looks and how it feels to have people avoid you, not just your kid... like maybe your horrible parenting skills will jump onto them if they get too close.  I'm sure it makes them uncomfortable to see him act that way, and I am sorry.  I really am.  But not more sorry than I am that Ryan is so upset. 

Fast-forward (for you young kids, that was what you did with cassettes... you had to wind the tape forward, and it was fast... nevermind) to Target.  This wasn't simply selfish, but it was a little indulgent.  We needed more cloth diaper inserts, more wipes, and mommy could really use a new swimsuit.  The one I bought for our honeymoon is getting kinda see-thru... and no matter how much weight I lose, that's still yucky!  Thinking we could help our little guy, give him something to make the trip more fun, we grabbed a bag of popcorn on the way in.  After refusing multiple times to share with his brother, Ryan lost the popcorn.  When he calmed down, he could have it back.  But for now, no popcorn. 

Can't tell you how many times I said that.  No popcorn while you're screaming and beating your head.  No popcorn while you're squealing like an angry pig.  Calm down.  You're ok.  I tried everything I could think of, stayed calm, and tried to remember what I was looking for. By the time I was halfway through our list, Ryan had started to hit his brother.  I heard Richie cry and asked him what happened... and hearing him say "Yyan hit Wichie onna ahm" I almost cried.  I hugged Richie and asked if he wanted to move, but he wanted to stay with brother, who was still screaming.  Then a few seconds later,


"What is it, sweetie?"

"Wichie wants Yyan ta havva poptorn."

Ever cried in Target?

So I got the popcorn, and explaining as best I could to Ryan that his brother, whom he had just hit, screamed at, and hurt, wanted him to have it.  Grace and mercy from a three year old. 

I may not get to shop for clothes, I may wear the same clothes I have for years.  I may only go on a date with my husband by ourselves when the grandparents can watch the kids, we may never take a trip as a couple, our house may always have little signs with velcro strips plastered to the walls.  We may be sick of feeling like we're being tolerated, sick of ignorance, judgement, and not being able to fix it.  We may be on the edge all the time, feeling like we constantly must be on our toes, frustrated by schedules, limited by timers, money, and humanness...

but oh my WORD how fabulous it is to see our barely three-year-old teach his brother- no, his mother and father- about grace and mercy. 

I can guarantee you that I wouldn't trade my life for anyone else's.  Not Eric, not Ryan, not Richie, not Maelynn.  After eight years of being Mrs. Senzig, I wouldn't have made that decision any other way.  Eight years plus nine or so months of laughter, challenges, tears, rejoicing, and heartache as we take what life throws our way... after eight years I can tell you that we're better than we were at being married on June 7, 2003, but we have a lot to learn.  Amazing, that committment... that covenant with God and each other to love each other through it all.  To cling to the Lord and one another while forgiving, extending mercy and grace, and learning to see God's hand in it all. We've had some amazing times, Eric Senzig.  I stand in awe at the relationship God gave us within a week and a half of our first date.  I can honestly say I am more in love with you now than I was in 2003 (which I did not think possible), and I will be more in love with you tomorrow. 

Happy 8th Anniversary, honey.  I love you... and I promise to work every day to better 1 Corinthians 13 love you. 

If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. If I give away all I have, and if I deliver up my body to be burned, but have not love, I gain nothing.

Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.

Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. For we know in part and we prophesy in part, but when the perfect comes, the partial will pass away. When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways. For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.

So now faith, hope, and love abide, these three; but the greatest of these is love.

1 Corinthians 13, ESV

Monday, June 6, 2011

Tales of Day Camp 1

Ryan's first day of day camp sponsored by the Baylor Autism Resource Center was today!  We have been looking forward to this... and that's the understatement of the century.  It's also one of those days I'm thrilled to be married to Eric.  Not many men would hurry to get out of bed and through the shower by 6:15 so that you can run at 6:30.  Someone had to be here when the kids got up, and Eric didn't have to be at school until 7:50 or so.  Sorry ladies, he's taken.

Anyway, we managed to make it out of the house a wee bit later than I'd planned.  The boys had a cereal bar and milk, and I managed to grab some coffee as I stuffed extra diapers, straw cups with water, a box of off-brand teddy grahams, and my shopping list in my giant pink backpack.  I let Mae sleep until the last second, and after diapering, slipping a comfy knit dress over her head, and grabbing another pigtail holder and some sandals she was pretty much ready to go.  Oh crud... medicine... that nasty white liquid down Mae and Ryan, and then it's time to start the kiddie caravan to the, well, to the caravan. 

We made it to campus right as it was time to get started.  I'd thought it was funny that there were no forms... and there they were.  So after Ryan was contentedly with his new friend (we'll call her K),  I boxed Richie in on the steps and filled out the paperwork.  As I started to fill out the forms, I could hear meltdowns all around me.  I could hear a grandmother behind me, asking questions about her form.  I could hear mothers waiting to leave until they couldn't see their precious ones anymore.  I heard one boy ask one of the counselors "How old are you?"  and the counselor answered "22".  Then the camper giggled, saying "I'm 14!" and scampered off with his group. 

These settings, just like the Autism Walk, make me choke up every time.  The students who work with the campers are great, but that's not it.  It's being in close proximity with so many others who get it.  So many others who know that just because their child looks normal (whatever normal is), and their age may suggest being able to walk in a line without getting lost, they must be watched and at times held onto.  They know the sick feeling that flares straight from the heart as the words "where's ____?!?" fly from them feverishly as they look about.  They also know how hard it is to trust that it'll be ok.  It's comfortable.  Finally.  Comfortable.  No judgement.  No one looking at you like a circus freak.  And the students?  Totally thrilled to see Ryan.  Totally.  No worries, just when to be back.

Usually that wouldn't cut it for me... if someone says "oh, he'll be fine" I'm learning to take that as a red flag... especially if it interrupts my explanation of who he is, his limitations, and things he needs to be safe.  But these people are trained, they remember Ryan and know his name before he gets his nametag.  No one calls him "Eric", his real first name.  He's Ryan.  Instantly, three of the grad students were around him, gushing about how awesomely cute he is in his glasses... three beautiful college girls gushing over him, and he's all about finding an elevator.  That's my boy!

So Richie, Mae and I went to the big swing hanging from one of the old trees on campus, and we just sat swinging, watching people for a few minutes.  After a bit, Richie decided it was time to go see the bears.  Way, way cool... they were out playing and eating!  One even walked over and pretty much touched Richie's face through the glass.  I'm sure she was thinking "snack" but Richie was utterly impressed.  After a trip to the grocery store (complete with awesome red race-car cart, I must add), we came back, changed diapers in the back of the van, and headed back to get Ryan.  He was laying on the ground in a tunnel-like thing between the buildings, yelling to test the sound.  When he saw me, he smiled and ran to me, gushing about how much fun it was and how cool K is and oh my gosh mom tomorrow we're gonna...

Nope.  Just kidding.  He saw me, but wasn't terribly impressed with my presence.  He didn't scream at the sight of us, so that's good, right?  K's description of his day was that he did wonderfully, had a great time, and that they need to wear something we don't care about tomorrow because they're going to tye-dye.  Oh, and a couple of dollars to spend would be good, because they're taking a trip to the SUB, mostly for the older kids to learn how to order things.  The little kids can buy something if they want.  Cool.  After mumbling something resembling thank you and K's name, we were off. 

Once in the van and on our way home, I asked about his  day.  "Did you have fun?"  Silence.  "Do you like camp?"  More silence.  "What did you do today?"  Nothing.  But for once, that's fine.  I'd love to hear his description of the day, but I likely won't.   But I know he had a great time... I trust the BARC students, and I know the look on his face... and I know the sound of NO screaming when the littles and I walked up. 

So very proud of you, little Ryan!  No fight to go with K, no fight to leave.  I meant to pack lunches, but instead grabbed a snack for the kids at the last minute, and no fight over not having his beloved pb&j.  We were home in time to relax and catch "Finding Nemo" again before Daddy got home. 

Richie, who I am also incredibly proud of, put himself to bed for a nap, complete with Snoopy.  Mae is sitting next to me on the couch, flipping through a Thomas book. 

My kids rock.  I may not get everything right... I may be messing up and dropping the ball more often than not, but God is blessing our family more than we dreamed.  Just having these three sweet, precious ones in my life means we're blessed beyond measure.  But not that long ago we wrung our hands over the price of therapy and the distance.  Now we not only have therapy, but we won an ipad in a raffle, have therapy we can afford, a cool camp experience, and even when it looks like there's no way we can afford to do the things we need to do, it happens.  The money, the equipment, the time, the patience... it all comes.  It comes in opportunities, it comes in the generosity of others.  But it comes.  Just when I've thought I "made it happen" by something like whittling the grocery bill, cutting corners here and there... God gives.  And when it's all said and done, we have what we need.  If we don't have something, we likely didn't need it or it wasn't right in the first place.  All I can say is THANK YOU LORD!

Now if I can remember the grotty clothes and money for tomorrow...

Stay tuned for tomorrow's camp update.  We're there all week!  And tomorrow, Daddy gets to go.

Thursday, June 2, 2011

Richie-roo, Birthday Dude!

Three years ago, shortly after 8:00 AM, Richard Allen Senzig made his debut in an operating room in Waco.  It was fun!  I was giggling, Eric was nervously giggling, and the doctor and the anesthesiologist were cracking little one-liners back and forth... perfect setting for our little entertainer to enter the world.  His birth was so easy and no-biggie that as they wheeled me into recovery I was talking about names for the next one!  Richie loves Shaun the Sheep, Thomas and Friends, Elmo, and is caaa-razy about his big brother.  He does just about everything he can to be just like big bro, right down to stimming!  I've seen him take the same toy Ryan plays with, put it in the same place and attempt to play with it the same way.  It always ends up with the same result... doesn't last long, and Richie winds up with this "what in the world does he see in this" look on his face. 

I'll never forget the first time Richie attempted to be like Ryan.  A couple of years ago, Ryan was super-into banging his head when he was upset.  We lived in a duplex then, and it had hardwood floors (don't get me started on that house... it was just a step or two above camping for a long time).  We had an area rug in the living room, and once when Richie was about 18 months old, he decided to throw a fit and bang his head just like he'd seen brother do.  He started with that angry toddler look on his face, but after one bang of his head on that just-barely carpeted hardwood floor, he looked at me like "holy cow!  That HURT!" 

That was the beginning of my realization that we have a lot of work to do in making sure Richie is Richie, Ryan is Ryan, and to do the best we can making sure we parent to both in a meaningful, appropriate way.  There are things that Ryan can't handle at six that Richie could handle at two.  Not understanding this can get us in trouble. 

The Christmas I was pregnant with Maelynn, my sister got Ryan the coolest little train.  He was black, came with a coal tender, and his name was Hiro.  Ryan was so thrilled with his new train that he wanted to sleep with it that night.  Well, Richie gets to sleep with toys... why not?  So that night at Nanny's, I tucked Ryan into bed, all warm and fuzzy that my son finally attached to something that wasn't a drumstick.  He wanted to snuggle Hiro, I thought, and how sweet!  He's four.  Good grief, let him sleep with the toy.

It wasn't sweet for long.  The obsession with Hiro started quickly, but died hard.  He was so attached to that train that he wouldn't go to the bathroom, eat, sleep, anything without Hiro in his hand.  The stickers wore off.  He didn't play with Hiro much, mostly he just held him and twisted his wrist, clicking the rods on Hiro's wheels.  At night, he'd begun to click Hiro to keep himself awake.  The only time he'd put Hiro down was to get on the school bus, and that was a fight.  Oh, and if Richie touched, looked at, or even walked in the room, Ryan screamed bloody murder.  It was all about Hiro.  "Wantcha Hiro?!"  I can still hear his desperate pleadings when we finally had to wean him from his beloved train. 

The process was long and there were many, many screamy nights and days over that stinkin' black train, but we finally got Ryan off Hiro.  Lesson learned.  Now we're careful to set boundaries about how and where Ryan can play with favorite toys.  Drumsticks are only allowed in the living room, and can only be played on the practice pad, not on the furniture, the TV, or people (yes, he tried).  Ipad is only two or three times a day, sitting down, for 15 minutes.  If he starts stimming profusely, he has to change apps.  We've even deleted apps because all he did was stim on them!  Sounds mean, huh.  Not really if you know Ryan. 

Take your average alcoholic.  Need to keep him busy for a while?  Tell you what... I need to keep you out of my hair, so here's a fifth of Jack.  Stay busy for a while, please. 


Really, that's about as caring as handing Ryan the ipad and saying "here you go. I need to get some housework done, so knock yourself out."  At the end of even thirty minutes, he'll be screaming at the ipad, at you, at his siblings, slapping his head and ears, and oh, have a great time taking it away. I don't understand why, but I know this is how it is.  I've seen him too many times, confused, shaking and crying, unable to stop fiddling with it. 

We learned these things by trial and error... by fire.  For a long time Ryan's teacher couldn't use their district-provided ipads because Ryan melted down completely as soon as one came out.  They had to take turns, because there were about six kids in a class with two ipads.  We've gradually helped Ryan learn to play for fifteen minutes, then give the ipad to Richie for fifteen minutes, then (unless Mae wants a turn, and she's done it too) it goes back to Mommy and Daddy's room. 

Lots of things are like this at our house.  Richie and even Mae can handle a little more indulgence and a little more change than Ryan at this point.  Kids all still need boundaries, but sometimes in our world the boundaries can be relaxed a bit when brother's not around.  There are things we just can't go and do.  Waiting in line for things can be so stressful.  The standing still is killer for Ryan.  Yes, this means there are things that the whole family just shouldn't participate in for Ryan's safety and sanity.  Yes, this does mean we run the risk of Richie and Mae resenting Ryan for what they can't do.  But if we're careful, if we take care to treat Richie and Mae in ways that are appropriate and help them understand, we think that we also run the risk of our kids being incredibly understanding, caring, loving people.  People who learned at an early age that no, life isn't fair, and we aren't entitled to what we want when we want it.  They were born into this family... into a family with a special needs child... just like we were.  We believe that they, with guidance, will grow into who God made them to be, not resentful but loving and accepting of their brother and other special needs folks. 

So far, Richie is awesome with this.  He adores his brother, and loves hanging out with brother's class at school.  This morning, when Richie had a choice between eating his birthday donuts or being with his brother, he chose to get down and run back to see brother, and on the way I heard the sweetest thing.  In his sweet, newly three-year-old voice, Richie hollered "I love you, Yyan!" as he ran.  Richie has been screamed at countless times, hit over the head with several toys, sat on, shoved down, and for now, every time it's okay... as long as it's Ryan.  I'm sure that's not the end of it. 

We have a long road of balancing act ahead.  But for now, Richie's sweet smile and jabbery conversation makes me smile.  He is a relief, a breath of fresh air, a beautiful, blue-eyed, crazy-golden-blonde haired little angel who dances with Shaun the Sheep, loves to watch and read Thomas, work puzzles, and play ipad games.  He loves his sister, taking her binky out of her mouth to kiss her good-night, then popping it right back in.  He's a great helper, and has learned to get the wipes for his forgetful mommy when she's left them in another room again.  He's painfully shy at times, and tends to get a little dramatic when he's in the mood and doesn't get his way.  He loves to nap once he's already asleep, and (bless him) wakes up like his mommy.  He's smart, loves to count, and loves to have books read to him.  He loves Good Dog, Carl because he can almost read them himself... but could never love another dog more than Jedi.  He's amazed by the birds who have had babies outside our kitchen window, asking mommy to "pick up a Richie" and "Richie look at the birdies".  He loves to feed his sister, too.  He'd rather feed his ice cream to her than eat it himself. 

Richard A, Richie-roo, Richie-rooter baby duder, Dancin' Richie Rooter... you're a dream of a son, little brother and big brother, and we love you so much!  You're an amazing little man and we can't wait to see the man God has for you to be... but don't get in a big hurry to grow up... you're awfully cute and such a big blessing just the way you are.  And you are such a wonderful gift from the Lord!

Wednesday, June 1, 2011

One of these days...

This has been one of those days. 

It's one of those days where I have to dig deep to keep moving.  It's one of those days when you could swear that every last thing you touch is destined to turn to junk.  One of those days where the frustration is so acute that your heart stays in your stomach all day.

The start wasn't terrible.  I actually managed to get out of bed in time to run before Eric left for work.  Finally managed to get around the .4 miles (didja see that dot BEFORE the 4?) four times for the first time in a while.  Then almost as soon as I walked in, Ryan is not a happy camper.  He's refused his breakfast and is saying "I feel sick."  Great.  One of the keys of understanding Ryan is knowing that there are phrases he learned by rote and tends to throw around.  "I feel sick" can mean "I'm tired".  It can also mean he doesn't like what you gave him to eat, doesn't understand what's going on and is anxious, or it can mean nothing.  Gotta love echolalia. 

When asked "what hurts" and "what feels sick" and about ten other variations of this, my senses finally come around to realizing that the one time he's answered this question doesn't mean he can always answer it.  He felt a teensy bit warm, but not enough to warrant the fight of the thermometer (yes, any kind... I've tried and even the ear one and the one that goes across his head is a huge fit) and certainly not enough to call the doctor.  I mean, we love you Dr. M, but we were just there yesterday!  So I asked if he'd like some medicine to make him feel better... maybe he has a headache?  He can't tell me, so a little ibuprofen can't hurt.  After searching for the medicine cup, I decided it wasn't worth it and grabbed a shot glass from an old Oklahoma institution... and oh my word, I'm not kidding you... he flipped out over the medicine being in the shot glass.  Once he got the medicine down, though, he didn't want to give the glass back!  I think he decided he liked the way the cool glass felt, and it was heavy.  Love my sensory junkie. 

So we continue through the day... I put on a video long enough to have my version of a quiet time, and after that I need to start the journal entry for the day.  One of the biggest parts of my summer plans is to track the fits, goals, and just the days in a spiral notebook.  The idea is that maybe a pattern will emerge, giving us another key or piece to the puzzle.  So I get those things out of the way, accompanied by a cup of coffee. Things have calmed now... I haven't been screamed or fussed at in a few minutes, and I figure that maybe Elmo will again be the hero of my hygeine and keep the kids occupied while I shower quickly.  A quick glance to the living room and they're being so good... and I smell like a huge armpit.  So I do the famous five-or-less shower, and before I can throw shorts and a t-shirt on they're descending upon me.  Can't find shorts... oh yeah, they're still in the laundry basket.  Run to the kitchen to grab them, and there is a huge brown puddle on the kitchen table.

Yep, I left my coffee out. 

And Mae's a climber.  

Best part is that this journal that I've begun with all my goals, lists of what Ryan and Richie *can* do as well as the things I want to help them learn, where I've recorded thankfully just the last couple of days as a start, was lying vulerably on the kitchen table.  Now it was learning to swim in coffee with too much creamer. 

That just felt insulting. 

I'd like to say I managed to choke down the tears and swallow the imminent mommy-meltdown, but the truth is there wasn't time for me to melt down, and I honestly didn't have the energy.  The kids all needed to be dressed, and it was past time for that.  So by the time I got Ryan, Richie, and Mae dressed, the two diapers changed and rinsed, I was able to calmly rip out the affected pages, let a few dry and start over.  The rest of the day has been full of dropped this, broken that.  Messed up this, inferior job on that.  And education?  Pssccht.  We worked a puzzle and read a book, but not with Ryan. 

It's been one of those days where every time I ask Ryan a question he answers with an emphatic "MMMM" or "UUUUUHH"  type of fussy scream, sometimes with his mouth open, sometimes closed.  That "just leave me alone today" sound.  He doesn't want anyone around, especially his siblings.  He was lying on the couch this morning and Mae climbed up with him, just wanting to snuggle her big brother (not that he's ever let her before, but gotta love her optimism).  He promptly shoved her into the floor, not even remotely gently.  She pretty much landed on her head.  She was scared and upset at the fall, and I was scared and upset at the shove that landed her there. 

I wish I could say I was patient and kind every time he reacted that way, but I'd be lying.  If nothing else, he felt my frustration or saw it on my face.  And I hate that.  But the truth is that I'm human, and I can only take so much of offering someone something I know they like, then being immediately yelled at for speaking in the first place.  Sick or not, he gets in these moods, and all I can do is keep calmly saying and signing "say it, Ryan" over and over.  Eventually... usually... he either calms down or says what he wanted.  More often than not he's just calmed down, at least for five minutes. 

So all day, instead of the activities I'd planned, we just tried to keep him from screaming too much.  He was pretty much content until this afternoon, and it was obvious this time that he does have a fever.  Under his arm... only one I could find... 102.4.  Ouch.  He really was sick this time. 

The good news is he managed to tell me that he wasn't feeling well!  The bad news is I've heard "I feel sick" so many times that I almost didn't listen.  The other bad news is he still can't tell me what hurts or feels sick.  I've gone through all the charades and versions I can think of, and I still don't know where it hurts.  We called the doctor and are awaiting a call back, because our doctor is cool like that... and hopefully it's just an ear infection again.  That seems to be what happens to Ryan this time of year. 

But oh, how I long to hear those three words... "My ear hurts."  He will ask for the people train, Miss Staci, to go to Waco, to go to Baylor, to go to the train station... he can quote half of Finding Nemo, for cryin' out loud, but he can't tell me his ear hurts!!!  How desperately I want to be able to comfort my son, to stop his hurting, or at least to know where to start.  He is so amazing, so smart, so loving and sweet, and yet so scared and confused at something as simple as a band-aid.  I'm watching him now, with a dose of ibuprofen on board, walking around sticking the thermometer on daddy's neck, then Richie's... not telling them what he's doing, mind you... but he's caring for them in the only way he knows how. 

I don't know why God trusted Eric and I with this young man, but I do know beyond a doubt that God loves us, and He loves Ryan and Richie and Maelynn... and we're all knit together in this family for a good reason.  I can tell you one thing... I can't do it alone.  The frustrations are too great.  The task is too huge.  I've heard recently someone say that this Autism thing isn't a sprint, it's a marathon.  Pretty accurate... but blindfold yourself, drop yourself in the middle of a huge city, and go find a needle in the street.  Every once in a while, you get to peek out from the blindfold... and people come along to tell you you're going the right way.  Some don't, but most do.  I remember when Ryan used to wake up screaming every morning.  That's only been a little over a year and a half ago.  It's hard to want to get out of bed when you're met with that, knowing that's mostly what you're going to get all day.  It's so much better than it was then.  But it's still hard.

Precious Lord, take my hand
Lead me on, let me stand
I am tired, I am weak, I am worn
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home

When my way grows drear
Precious Lord linger near
When my life is almost gone
Hear my cry, hear my call
Hold my hand lest I fall
Take my hand precious Lord, lead me home

When the darkness appears
And the night draws near
And the day is past and gone
At the river I stand
Guide my feet, hold my hand
Take my hand precious Lord, lead me home

Precious Lord, take my hand
Lead me on, let me stand
I'm tired, I'm weak, I'm lone
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home

-Rev. Thomas A. Dorsey (1899-1993)

I learned that song in high school, and it still helps me speak when I'm too worn, weary and frazzled to begin to explain.  I don't have the answers, and most of the time I don't even have the questions.  The only thing that is obvious is that we have to keep going.  We have to keep improving how we do things, how we assess situations, how we understand, and keep learning.  We have to keep DOING it, not trying (thanks, Yoda). 

I'm gonna start by scraping myself up, going to my coffee-stained journal, and scrawling how the rest of Ryan's day was.  I'm gonna clean up after dinner so I won't have to do it tomorrow.  I'm gonna be okay with throwing out the academic, therapeutic parts of days when they're not fitting what Ryan needs.  I'm gonna keep thanking God for all we have, and although I mess up so much and have so little figured out, I'm gonna keep doing all I can to be the best steward of this family I can.

Because it's going to be alright. I know it is.  It's actually going to be better than alright. 

Because God promises His plan, and that's WAY better than alright! 
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