Monday, December 31, 2012

Happy 2013!

Ten years ago, my then-fiance and I were at a Dallas Stars hockey game.  We had floor seats, and even got close to a guy getting checked in the boards so hard the glass came out of the wall.  We had a gourmet dinner followed by dancing on the top floor of the Wyndham Anatole (or that's what it was then).   We dressed all fancy, all in black from head to toe.  We made plans, then kept them.

We blissfully celebrated, drinking in the blessing of each other.

Tonight is much the same.  We've made plans, we will... so far and Lord willing... keep them.  Much of them have already happened!

Black-eyed peas made in the crock pot, check.

Snacky food in the freezer ready for tomorrow's nonstop munch fest, check.

Cider mulling in the *other* crock pot, check.

Silly pictures with the girl, check.







And Rich joined us...


And now that they're all in bed, following the usual night routine, we'll stay up working a puzzle, snacking, watching a movie, and waiting for midnight.  Just Mom, Eric, and I.  

Isn't that wonderful?!  Quiet with an excuse to sit around and work a puzzle I've had for years that I've wanted to work and frame for my dining room.  

We love our plans.  And more than our plans, we love the ten-year journey that has brought us here.  We live in a place that was completely foreign to us ten years ago.  Yes, we wanted children.  But we had no idea the things they would teach us... the ways God had orchestrated for them to, in so many ways, save us from ourselves.  

And now, if you'll excuse me, the movie's starting.  

Thanks be to God for another year!!!  Happy 2013!!!

Oh, and one more thing... if you scroll up a bit, you'll see some purple on my chin.  Just so you know, making your daughter laugh by allowing her to pull a cup that you've sucked to your chin is not a great idea.  Mother was right... I have a ridiculous hickey around my mouth!  Haha!  Consider that your first PSA of 2013.


Thursday, December 27, 2012

Eye checkup time

It's time for Ryan's eye checkup. If you're new to the blog, he has pediatric glaucoma. It's controlled, but must be maintained just the same.

As we made our way through the cold, busy Dallas freeways to Children's, he periodically offered only one statement.

"No eyes!"

Oh gee.

We ran through the parking lot, giggling, and made our way in the door, where he looked up and said, Christmas tree!" there was a ginormous tree decorated to the hilt just inside. On the glass-walled elevator, he even gasped and spouted a breathless "wow".

Soon as we hit the clinic, it was back to NO EYES. This time more fiercely determined.

Here's where it's hard to put into words.

He just doesn't like it. He doesn't care or understand unspoken, unavoidable social contracts, such as " we don't take and throw down a little boy's bear because it's sitting beside us while we play a video game in the waiting room."

*sigh*

As we entered the room, mercifully enough rather quickly, I informed the staff that this could be interesting. Get this: they always say they know, then act like they had no clue. Fun.

I'll spare you the really bad parts. Let's just say I was proud that it only took three of us... Yes, us. I insist on helping. He is my child. But it did take three of us to get the eye drops in place.

When I say it took three of us, I mean me to hold his arms and legs (which means half-laying on him), a nurse to hold his head, and a nurse to pry his eyes and place the drops.  So much more than "not pretty".  I hate doing this to him. He hates having it done.

We waited our thirty minutes or so in the waiting room with the aid of the iPod while the drops worked.  He yelled out, hit, and fussed off an on about the elevator.  Thankfully my two years of junior high basketball were on board for herding him back into the room.  I had to hold him in my lap.

I had to hold his arms.

I had to hold his legs.

All that, speaking calmly while he hit his head with his fist and yelled.

He absolutely, unequivocally, positively HATES this.  And I can't blame him.

BUT...

It only took three of us to hold him.

He was good for one of the three doctors... he only yelled at her a few times, and he did finally look at her.

He enjoyed the elevator ride down, then melted down in the parking lot when he realized that he maybe should have put on the sunglasses they offered.  I offered them again in the car, again he refused.  He rode home with his head on he console, shielded from the light.

Once we were back to the house, I told Eric and his parents how it went.  Then I started to worry out loud about what happens when he's big enough that I can't hold him.  Eric's mom (well, our mom...) said it best.

God will make a way.

She didn't bat an eye.  And she was right.

A comforting blanket of reality and faith.  No, the reality of faith.

Thanks be to God for the improvements, and for having the rest of the story prepared.

And, of course, thanks to Mom for being ready with the comfort.  



Wednesday, December 26, 2012

Christmas Experiment

Let's do a little Christmas experiment (with my apologies to the Canadian Brass, for all you band folks).  

First, let's check out all these pictures of Christmas morning.  There was the shot of us riding out a storm, watching a video, and waiting for sister to wake.  


There was the Christmas picture by the tree, with most of us looking at the camera.  I'm quite proud of this one.


Lots of pictures of opening gifts.  In our family, the reaction shot is much sought after.  




Pretty happy kids, no?  Now check this.  "Ryan, hold up your present and smile for Daddy!"


Even Mommy had some great surprises.  My mom and Eric really pulled together for this one.  I got two snow globes... one with Cinderella and Prince Charming that says, "A perfect fit, right from the start" from Eric, and one that says, "Even miracles take a little time" from Mother.  



Yes, I have a shameless crush on all things Cinderella's castle.  And, well... mostly all things Cinderella.  There are folks reading who remember the first time I ever saw the castle in person.  It was quite hilarious.  I even dream of doing my dining room around a platter that friends bought for me that is a picture of the castle.  Childish?  Maybe.  But it's how I roll.  Someday I'll have to tell you why the castle is so close to my heart.  But I digress.  

Daddy got some good stuff, too!  He was happy to have a picture of the old Baylor stadium before they build the new one. He was opening something else here, but that was the biggie. 


 After Maelynn opened this, she said, "I have to eat right NOW!"  Minnie Mouse dinnerware has that effect on my girl.


And look at that grin, would ya?  



Ryan got a robe.  A grey robe with a hood, and yes, that is a gorilla face.  So cute.  He loves it!  I think it was his favorite gift.  He wore it all day.  


Maelynn styling "Pinkie Pie" once I managed to free her from the cardboard and plastic bonds that once held her. 


Oh, and Cranky the Crane.  This kid has begged for Cranky for. ever.  




Richie's favorite was a loop raceway for his "car treats".  It was so cool that Granny and GMV, our great-aunt who we had the pleasure of hosting, were in the floor playing and giggling!


Maelynn and her food for her "sick baby".  I swear, that doll is sick more than my kids ever were put together!  Ha!


Pretty much a great, fun, joyous holiday, right?  

Not so much.  

This gift-opening, schedule-crashing, sugar-rushing excitement is just too much.  He was a ball of nerves when he wasn't curled up in a corner.  Lots of hitting, much yelling, fussing, and melting down. Not that he didn't get what he wanted!  That "Cranky the Crane" that you see in one of the above pictures is what he's longed for!  He was happy for a few minutes.  He even said, "Thanks Mom."  

But most of the rest of the day was utter confusion.  He just didn't know how to handle the chaos.  

Today was more of the same.  Demanding the hotel over and over and OVER.  Then demanding the van to the same degree.  Hitting.  Yelling.  Grunting through his teeth.  All this while I had trouble with the dryer, our drains backed up, and I tried to pack.  Then we got through packing, and the van wouldn't start.  Thankfully, each thing was a minor setback in the end.  We did arrive and have dinner with the Dallas family, and it was fun but... you guessed it... it was too much for him again.  

Just when I think I've managed to cull out every last bit of expectations of the way things should be out of my head, I forget.  I blindly look forward to what I want, forgetting our challenges.  The stress headache I'm eager to lose wishes I'd learn.  I'm tempted to launch into a rant of my idiocy in not seeing anything coming.  

But then I remember the Israelites.  They didn't conquer the promised land in a day.  It took a long time.  

A long time of stepping out and trying again.  

A long time of looking forward to, and doing things we love, even if it's hard. 

A long time of hard days mixed with good days and even FABULOUS days... because that's life. 

So maybe it didn't look like the end of It's a Wonderful Life, with all of us smiling around the tree.  But do not lose heart... 

Even miracles take a little time.  

Hope you're having a merry after-Christmas, too. Because that's what it's all about. 

Thanks be to God. 

Monday, December 24, 2012

Merry Christmas!

I had a grand plan for this evening.  Christmas Eve was to be a super tradition setter!  We would set out for the Christmas Eve service at church prepared with a wrapped box of brand-new jammies for the kids to open afterward.  Then we'd drive around the city, looking at Christmas lights and sipping pre-made hot chocolate carried in a thermos.  Genius, right?  

Here's the embarrassing part.  

Last night, while we talked through plans for the day, a few things hit me right between the eyes.  

1. The service starts at 6:30.  We'd have to leave here at 5:30.  We'd have to eat dinner at 4:30.  

2. Ryan isn't used to going to church on Monday, or at night. 

3. The service was to be quite different than the kids are used to.  

The one wasn't a big deal.  The first one could be overcome easily enough as well.  It's that middle one that was the killer. 

Yes, I could have gone to the service.  It could have gone badly.  It could have gone well.  And if you're around this blog much, you know it wouldn't be my first up-in-flames, wheels-completely-off experience.  And I know that if it had gone badly, the family and the church family would have been supportive.  

And yet, it's 7:30 and I write this from my kitchen with "How the Grinch Stole Christmas"... the original animated one... in the background.  

This time, we had to decide between good and best.  

Don't get me wrong.  I know I would have enjoyed it, and I was really looking forward to the service and the following fun.  But what I hadn't considered is time for this:


And some of this:

And this:






We watched movies, visited, played, laughed, prayed, and celebrated Jesus and the wonderful freedom he gives us.  We celebrated the covering of our sins, the thankfulness we have for the ultimate gift, and the gift of each other.  We celebrated the gift of the past by sharing memories.  

We celebrated by making new ones.  

As you settle in with cookies for Santa, your reading from Luke 2, or whatever you wish... remember that it's about Jesus... and that his love is more than enough to cover all the things we just can't do.  

Even when it's staying home because the thought of your son melting down in a flurry of torturous confusion was too much for your heart. 

Merry Christmas from Eric, Crystal, Ryan, Richie, Maelynn, Jedi, and Diamond!  Sleep well, our friends, and be safe.  Taste the moments... savor them... and thank God for every one. 


THANKS BE TO GOD FOR HIS SON!

Friday, December 21, 2012

Nemo and Mary

At 2 AM, Ryan woke crying and fussing.  Eric went to him, being the super dad he is, and it turns out Ryan wanted Mommy.

That is the first time my son woke and asked for me.

So I peeled back the covers and invited him to snuggle down with Mom.  I didn't sleep much, but hey... today is Christmas vacation!  We're expecting family late tonight, so I have baking and cleaning to do.  But first, the kids wanted to watch Finding Nemo.

And they asked Mommy to watch, too.

I love that movie.  It's my greatest challenge as a parent and my worst fear all rolled into one movie, but it's great.  And the kids love it.  Ryan even danced down toward me and quoted what Dory would say on the menu screen before she said it.

But the movie is so close to home in so many ways.  This morning, between looking at the Christmas tree and watching the first scene in the fish tank at the doctor's office, I can't help but think about Mary.

Yes, Jesus' mom.  Just as Gill understood and challenged Nemo, this Christmas Mary challenges me.

She knew what it was like to make decisions the world didn't understand.

She knew what it was like to be stared at.

She knew what it was like to be called to something that so many would not understand, or even despise.

She knew what it was like to be different.

We aren't given a cold standard to strive toward with nothing to buffer our failure from God's wrath.  We are given a Savior who came to live as we live, and overcome death.  He didn't come as they... as we... thought he would.  And for now, the knowledge that He and his family knew more about different than I can imagine is so much more than a soft cushion on which to land my tired heart.

It's inspiration to keep pedaling.  To keep still and do my best to live every mile, every foot of the journey.  Not just survive them.

Now if you'll excuse me, Nemo's about to attempt to help the crew escape from the tank for the first time.  Later, I have to bake cookies and pies and clean house, but for now, it's snuggle time.

Merry Christmas and happy vacation!

Thanks be to God!!!!!


Thursday, December 20, 2012

In the Corner

I wish I could say I didn't groan about having to go back to Waco yesterday, but I'd be lying.  The day was tiring and overwhelming, with the need to finish preparations... and laundry... before my sister and brother-in-law arrive late tomorrow night.  No matter how I tried, the good attitude wasn't sticking.  I was just tired.

So last night, we agreed to hit the sack by 9:30.  We did, and it was great!  Even when I woke up at 4:00 AM with the stunning silence of a power outage I felt more rested than I had in a few days.

After laying in bed for an hour or so checking emails, the weather, etc.... because what do you do without electricity at four in the morning... Eric's alarm went off.  After I knew he was up, I went back to sleep.  I guess knowing he was up was comforting.  Anyway, he looked online and found a white noise app and turned it on for me.

What a great guy.

After sleeping until about seven, I woke needing a shower.  It hit me that we likely wouldn't have much if any hot water.  The power was still out.  But no problem, I just dressed the kids in warm stuff and threw on some warm ratty clothes and a ball cap to run Richie to school.  Eric was able to take Ryan, which was helpful so that I could finish making the ornaments that burped paint all over me the night before.

Aack.  And Richie's lunch.  Poor kid.

Eric even went and got donuts.  Usually Ryan loves chocolate donuts, but the no-power thing was too weird and he just wouldn't eat.  Last night he acted like he didn't feel good, resulting in a dose of ibuprofen and an early bedtime, but he seemed just fine health-wise this morning.  So off he went, toting his donuts in a sack with an explanation of why he hadn't eaten.  Because he's always eaten.

Once I was back from taking Richie, I dug into getting Maelynn ready for the day.  I kept plugging away at laundry, picking up the living room and kitchen, that kind of thing.  Then the phone rang.

Is there anyone who likes seeing "Elementary School Nurse" on their caller ID?

Or am I the only one who keeps her in my address book...?

Anyway, there Ryan was, on the day of his Christmas party, in the nurse's office.  They said he looked flushed and just wanted to lay around.  Of course he wouldn't allow them to take his temperature.

Ball cap back on, grab Maelynn, start calling the doc's office, head to school.

The sweet classroom aid, Miss K, brought him out not only with all his classroom gifts, but with the sign-out notebook from the office.  I love these people!

At home, I continued the flurry of calls.  He kinda slumped on the couch and said, and I quote,

"I'm in saaaad shape!" 

Oh, that boy.  He still didn't want to eat.  Still didn't want to do much other than lay around for a while. Determined to rescue his and our holiday, I called and called the doctor's office until I reached someone.  Our favorite doctor was booked, but they're all good, so we went to one who had never seen him.  I have, but Ryan hasn't.

And as you might have guessed, that's quite a difference.

The only catch was that the appointment was at 1:30.  Richie's preschool Christmas party was to be from 1:00 to 1:30.



Enter Granny.

My Mom took Ryan and I took Maelynn to Richie's party.  Then as soon as the party was over, I ran the littles over, met Granny, and traded kids and vehicles.

Once Granny and the littles were on their way home, this happened.


After buzzing around trying to touch and/or mess with everything he could reach in this tiny room (including the trash can... eew) he picked up the Gideon's Bible and said, "Holy Bible."

He stood at the counter for a minute with it open, saying something about shepherds... I really thing he was trying to act like Linus in the Charlie Brown Christmas show.  Then he sat down and started to kinda flip through it.

Soon, the doctor came in.  He asked Ryan to get up on the table and sit up, he didn't want to sit up.  Then he did.

It was the usual person-not-used-to-autism thing.  But in a good way.  He was interested in the best for Ryan, didn't want to misunderstand anything that was important, listened to me, believed me, listened when Ryan spoke, talked to Ryan, and was generally all of what I expected.  He was a good doctor. Maybe not the very most comfortable with him, maybe not the most comfortable with kids, but a good doctor.  And a nice guy.

And Ryan was as good as he could be.  Oh, he had issues.  He didn't want the doctor looking in his ears.  He obviously didn't answer a single question, but did loudly proclaim, "I don't like medicine!" when the doc told him that he'd give him something to help.  Come to think of it, the doc might have been a touch weirded out when I half-celebrated Ryan's clear dislike of medicine.  I did explain, though.  And he listened.

Once I was home, I realized how much I'd already cancelled just in case this was the flu. Thankful that it's just allergies and/or a cold run amok, I started to relax.

I started to hear that voice saying, "You have to do the responsible thing.  This is the responsible thing."

I began hearing my own advice.  My own admonishment even to myself to not miss Christmas amid all the, well... Christmas.

You know what?  I believe that God sees what we're doing.  How tired we are.  And although I hesitate to call my son not feeling great mercy, I believe that the unexpected forced vacation is just that. It's mercy.  He's our Father, and knows best.

The fact that it seems half our school district has the stomach flu, the flu, or something else nasty... and we just have snotty ick... is mercy.  But so is the fact that we have a little forced time to be home.

I was tired.  I love the things I needed to do, but I was overwhelmed with the good things I had on my plate.  There are so many things to do still, and they are all things I want to do for my family.  But there are times when we need a trip to the corner.  A minute to stop and think... or maybe something to make us stop and think.

So tonight, we'll hang out and watch a movie in the living room instead of what we had planned.  I was looking forward to the plans, but I have to admit that I needed rest.  This year I wanted so badly to enjoy the season, and it's already the 20th.

Hang in there, and Merry Christmas!  If you're one of those families hit by the bug, we're praying for you.  May all be well in time for festivities!

Oh, and by the way... the power came back on around 9:00, and I had a nice hot shower right after I got Ryan.

Thanks be to God!




Wednesday, December 19, 2012

Ham Loaf Saga

Yesterday was supposed to be pretty easy.  I was super prepared and organized.  I had gone through each recipe that Nanny used for Christmas with the exception of jello salads and reorganized them into a single document.  Then, using that document, I went through everything and did the math on every ingredient, noting how much of everything was needed, whether we had it in the pantry or needed it on the list.

Then there was my list.  My shopping list was beautiful!  A neatly organized Excel file categorized by where the items were in the store.  I planned for a breakfast casserole to cook overnight, snacks for the day and happy hour, and of course Christmas dinner, which will be on Saturday while my sister and her husband are here.

I had one stop to make in a town that's not at all on the way to Waco, but had to go all the same.  I'd promised some bows to a store over there, and after staying up extra late to make them, we'd deliver them and then head to Waco to get groceries and the last couple of other errands we needed to run.

The morning was going very smoothly.  Ryan was happy, the littles were great.  Richie was even super cute as I dropped him off at school, turning back to wave several times.  Then we were off to execute the day I'd so carefully planned.  See, I had to be back at 2:30 to get Richie, then we had to get Ryan at 3:25 and his speech appointment at home would be at 4:30.

We drove the twenty miles or so, pulled up to the store, and guess what?

I forgot they don't open until ten.  It was 9:02.

After reeling in my failure to think this through, including an explanation to my daughter who likes that place and didn't understand why we'd drive up and then leave, we headed on to Waco after a short stop for breakfast.  The two stops we made before the store were easy.   Then we pull up to the store and I realize I made my beautiful shopping list with the wrong store in mind.

No big deal, I still have all the items on the list.  Just have to be a little more careful to make sure I look at the right part of the list.  I even remembered to grab the insulated bags and the "green" shopping bags before I went in!  I could still get everything done today and have Wednesday to clean and tie loose ends at the house.

After a successful trip to the produce section, we made our way to the meat counter.  I knew what Nanny always did for her wonderful, once-a-year ham loaves.  She always went to the store, bought a ham, and had it ground.  By "always" I mean for over fifty years.  This is possible.  It has been done.  Granted, in a different state, but what does that matter?

So I stood at the meat counter with my shopping list, still feeling pridefully organized.  I'd ask for the ham ground, it would be done by the time we finished our other shopping, and I would pick it up at the end.

After having an employee or two look at me like I had lobsters crawling out my ears, I found the guy who could help.  He was still quite puzzled as to why I wanted a raw ham ground, but said he'd get a picnic ham and grind it for me.  No big deal.  He even let me pick how finely I'd like it ground!  I felt like such a big girl.  Surely Nanny was smiling somewhere, knowing that her favorite Christmas dinner recipe was in such great hands!

Only one problem... no picnic hams left.  The only hams he had left were smoked.  Whoops.  The quickest he could possibly have it done would be tomorrow after a truck came.  No problem.  I'll just have it done in town!  Better to spend money in town anyway, right?

After a few phone calls over lunch, my husband let me know there was no one in our area that would do it.  One man even went to the trouble to tell him the reasoning why.  He could do it, but they have one meat grinder, and if he did that he'd have to clean the whole thing before grinding anything else.

So we came home with everything... and I mean EVERYTHING... but the ham for the ham loaves.

I woke up this morning dreading another drive to Waco.  And how do I get everything done at home?

So that's why I'm telling you all this.

No, really.

Yes, I'm tired.  Yes, I have a lot to do.  Honestly, I'd planned to reprint a Christmas post from the past so that I could keep running.

Then last night, in keeping another promise I'd made, I was playing in an ensemble of our friends/colleagues for a Study Club party in town.  In between rubbing my exhausted face that isn't used to playing much anymore and remembering to watch the key as to not blast any klunkers, I caught myself playing "Silent Night".

I pictured my kids, at home watching a movie with their Granny while I played.

I thought about what they would remember from this Christmas.

I considered what I remember from Christmas as a kid.

I pondered what I want the kids to glean from the festivities.

Not one thing I could think of had anything to do with ham loaf, perfectly crafted shopping lists, or a super clean house.

I do remember wishing I could be with certain folks.

I remember Christmases before Eric when I longed for him, although I hadn't met him.

I remember Christmases with Eric, when we looked forward to having kids.

I remember wishing I could be home.

So here I am again, forcing myself to slow down and attempt to live up to another promise... this time much more important.  The promise to remember and savor.  The promise to taste every aspect of Christmas with the awe and wonder of my children.  The promise to remember what we have.  It wasn't that long ago when we couldn't afford Christmas cards, because the postage was more than we had to spend on all three kids combined.

We have so very much.  We have been brought through so much.  We have been rescued from so much.  And while there are many responsibilities of the season, the biggest is to remember not to be one of the innkeepers who shooed Mary and Joseph away.

Let us make room.

Thanks be to God!







  

Monday, December 17, 2012

Hard

Just like so many other parents around the nation... maybe even the world... on Friday at about 3:30 I stood in my driveway, hugging my eldest.  He seemed to know that I needed to cling to him for a minute.   It's times like those that I'm thankful he's a sensory seeker.

Mother and I had been wrapping presents all day.  Trains, ponies, Minnie Mouse sets, puzzles, blocks, and little pajamas and a nightgown.  A new robe for Ryan, a hoodie for Richie, a new dress for Mae.  All the packages with cartoon-characters wearing Santa hats and red clothes... except for the princesses, of course.

And I couldn't imagine all of a sudden not having children to open them.

I kept pedaling, as you do, and enjoyed my babies more this weekend.  But in everything, even with nothing said, we silently agreed our hearts were broken for those who lost their world.

At one point in the day, it was brought to my attention that the shooter may have been on the autism spectrum.  In an instant, that world hit my world.

I felt sucker-punched.  After all we do to demystify, de-stigmatize, and yet make others aware of the challenges of life with autism, there goes the media again.  Thanks a lot.  I was already angry at the idea that the media would use accounts of children who had already been through so much in their reporting, and now a knock that could undo so much.  Another slap in the face to the cause of acceptance. I was tempted to start a post then about how the media shouldn't be diagnosing people, and how damaging that can be.

Thankfully, I was too busy.

Sunday afternoon, while my kids rode their bicycles and Eric put out some more lights, I read this.

Ouch.

There is always another step back to be taken.

Ryan's violence is largely self-directed.  But it is violence just the same.

The past few days have been hard.  He hasn't wanted to do anything we ask if he's already doing something.  Homework has been a throw-down.  Getting dressed a near wrestling match.  Leaving a store yesterday was like herding an angry bull.

I don't want our home to be driven by fear.  So much of my life around my father was based on keeping under Daddy's radar.  Don't say anything to set him off.  Just agree.  Just go with it.  Just make him happy.  Just make him proud.

Or else.

I hated living in that fear.  And now, I fight every day to keep the elephant in the house at bay.  The one that runs a desperate balance of what we just do, what Ryan can tolerate, and what we can tolerate Ryan attempting to tolerate.  How far to push.  We must keep him going, we must make sure his life is as happy as possible, but at the same time we must not forget to protect our other kids and live our lives.

We can't pretend that autism is cute.

Yes, Ryan is cute.  He's adorable when he's calm!  He is funny, loving, and shows more empathy for others every day.  But at the same time, he does not respond well to being told no.  His anger is not cute.  He is bigger every day, and with every meltdown I have to wonder how much longer we can realistically deal with him.  We pray that as he grows, the need to hit himself and the intense slavery to routine will fade.

But even though he may become super-compliant, even though he's not at all the worst it could be, even if he grows past the need to melt down, there is still an elephant in the room.

In the house.

In the nation.

Mental health is not something we can continue to ignore.  The thing I was missing is that it's not about autism.  It's not about defending autistic people.  It's about the desperate need for help for all families and individuals with mental and emotional issues.

Too often these people are shoved aside by society.  We don't want them in our schools, so we find a way to keep them in a separate room "for their safety".  We don't want them in our churches, so we systematically ignore them until they fade into the black.  We preach that depression is due to a lack of faith, causing those of us who needed chemical help, whether temporarily after a death or the birth of a child or somewhat permanently to function to wade through even more guilt at the thought of yet again not measuring up.  At the same time, we don't want to appear unsympathetic, so we shut down mental health facilities when they are corrupt and abusive instead of repairing them.  Insurance doesn't pay for so many of then things that actually help, such as ABA therapy, and support groups are few and far between.

What's left is desperation.

What's left is exhaustion.

What's left is not necessarily a killer.

What's left is a call to remember that whatever parts of our minds are intact we should be grateful for.

What's left is a great need for compassion, not judgement.

After reading this, I'm in a blizzard of thought.  But the most prevalent thought is not that I am also but by the grace of God Adam Lanza's mother, though that is true.

The most prevalent thought is something brought out in the sermon yesterday.  Well, two things really.

The first is the notation that in Mark 6, when Jesus walked on the water and calmed the disciples in the boat, he came at the darkest hour.  At the last second.  At the hour of greatest need.  They could not decide when that was... only the Lord knew.  They were to keep moving.  Keep believing.  Keep doing what was before them.  He was watching, and when his time came, he calmed them.

Once you have been subject to the pain of judgement, the temptation to judge all but disappears. When the loneliness... the isolation... the pain of those things and the differentness of your decisions and the paradigm shift rocks your life, making it personal, all of a sudden you are less likely to tell people how to live.  How to think.  Who to be with.  How to act.

The importance of the pious, puffed up list of "what we don't do" items shrinks.  Fades.  Its force in your life decreases.  Less and less you say, "I would NEVER..." and "If you would only..."  and more and more you find yourself listening.  Trying to truly feel what others experience.  Admitting that you can't possibly know what it's like.

More and more you see the wisest answer is at times the simplest... the most innocent... "I just don't know."

More and more you see that the identification of the question is far harder and more important than the search for the answer.

More and more you see how inadequate any human question or answer is to covering the issue.  The more you step back, the more connected and complicated the question, the more distant and vague the answers.

More and more you realize your inability to look up, and are drawn to the love that comes down.

Thanks be to God for his sovereignty and providence.

And indeed, for His grip on me and mine.



















Wednesday, December 12, 2012

Christmas Tripping

Tonight as I was doing the last few dishes, Maelynn came in and pushed in the bottom basket of the dishwasher, and almost had the door closed before her daddy came in to stop her.  A minute later, I told my husband something that smacked me right between the eyes...

"She's trying to help, but isn't paying attention."

I've told her so many times to please ask before she closes the dishwasher.  While she has improved her technique, she still walks up and closes the dishwasher when I'm in the fat middle of dishes.  Not all the time, but often.

She reminded me of me.

Actually, she reminds me of me anyway, since she looks like me more than the boys.

Every year around October, I promise myself that I'm not going to wind up in Grinch mode.  I formulate what I think is a plan, then go about forgetting to work on things early until early has turned to on time.  On time turns quickly into panic time. Before I know it, I'm a wad of stressed nerves, completely consumed by the to-do list.

It's not that I don't like Christmas.  I love it and looks forward to it every year!  Every year comes with the internal promise to savor, not rush through, and certainly not begin bah-humbug-ing my way through, missing the joy. Every year I vow to slow down, focus on the true meaning of Christmas, and be sure to drink in every moment.

Guess what?

Just like every year, I'm freaking out.  I was up before my alarm went off in a panic over remembering how to do a mail merge to make labels for our Christmas cards.  We're talking tears, people.  Over labels.

Instead of being truly thankful that we can afford gifts, I'm worried about when I'll wrap them.

If that wasn't enough, the other day one of the kids mentioned something from the back seat about Christmas coming from Target.

Hoo boy.  Major Mommy fail.

It's not pretty, but there's really not much I can just decide to leave out at this point.  So what to do?

The only thing I can do.  Accept the grace and mercy of the Lord and my family.  Stop, look around, and remember that although I can't start over everything, I can regroup.  I can ask forgiveness of anyone in the path of my frustration, and I can ask the Lord's forgiveness for my neglect as well.

Too often I become so busy with finding the perfect gifts, preparing, and delivering them on time that I forget to share the most important gift.


For unto you is born this day in the city of David a Savior, who is Christ the Lord. And this will be a sign for you: you will find a baby wrapped in swaddling cloths and lying in a manger. And suddenly there was with the angel a multitude of the heavenly host praising God and saying,
 “Glory to God in the highest,
    and on earth peace among those with whom he is pleased!”

Luke 2:11-14, ESV


I can't promise that I won't get stressed or overwhelmed again this season.  But I can share with you that when I catch myself grumbling or acting like the world will end if I can't remember how to make a label, I will stop.  I will forgive myself for grumbling, and I will ask forgiveness of anyone who received my grumbling.  

Then I will move on, looking for the joy.  

Why wouldn't I make the lofty promise that I will never ever stress again or act for a moment like gifts, decorations, movies, and the whole Christmas culture is what it's all about?  It's quite simple.  I can't believe I've missed it every year.  

Jesus came not to make us feel guilty.  He came to free us from the chains of sin and death!  So why in the world would he want us to feel guilty?  To pile guilt on our own heads because the ornaments aren't spaced perfectly, our Pinterest wreath project failed, we forgot the brownies for our kid's party, or got aunt Mabel the wrong size sweater... or even managed to forget to send a Christmas card... is to miss the point of Christmas entirely.  

So go ahead.  Bake your brownies, wrap your gifts, have those Christmas pictures made, Pinterest project your heart out.  But remember why you're doing it.  And if you forget why for a moment, take a second and remember.  And remember that it's the stopping and righting the ship that matters, not your ability to make the perfect divinity or assemble the perfect wreath.  

Now to get back to work on those Christmas cards... 

Thanks be to God!

Tuesday, December 11, 2012

It Gets More Than Better...

For a long time, I thought I had to be the worst mother ever.

When the other mothers showed up to the church nursery to pick up their kids, they recognized her voice and ran.  Not so much for Ryan.

When his brother was little, just walking and getting around, Ryan would often scream when he came in the room.

He didn't seem to want to play with me.  He'd sit in my lap for a bit, but that's about it.

Even with a picture of yogurt and crackers versus a picture of chicken nuggets, he couldn't gesture to tell me what he wanted for lunch.

He didn't speak.  He did tantrum and melt down.  We cobbled together a few hand signals for things, but that was about it.

For years, the question of how his school day went remained answered only by silence.

Now, it's answered by a short phrase or single word, but I at least... as of this week... get a "yes" or "no" to "Did you have a good day?"

He asks for what he wants, most of the time.  Maybe when he knows what he wants.

He makes choices, and he understands how to choose one out of even sometimes three choices.  Even just verbally, he can choose between two things.

While he still isn't great at playing *with* others, he is beginning to try.  Just today the phone rang and it was his resource teacher.  Turns out that they're seeing the burst of communication and affection that we are at home!

Turns out that two girls and two boys have been noticed by him and kind to him enough that he has told them "I love you, ______."

Turns out that Ryan noticed that one of his girls has been absent.  When it was time for her to come in the room, Ryan asked for her.  He said, "I hope M is not sick today."

I KNOW.  Holy cow.

In another class, he walked up to one of the speech teachers and asked, "Mrs. S, are you my friend?"  Of course she replied with a hearty "yes" and much praise.

He likes to hug his teachers and tell them he loves them, too.

Not only does he do all this... I hear about it.  His resource teacher called me and sent a note home... more like a letter... detailing all these great leaps in social interaction!

And then there's this...


They stayed this way for at least thirty minutes.  Happily.  No complaints, no hitting, no yelling, no fussing.  No fighting over the iPad.  

Hang in there, parents.  

You who are just getting the inkling of a diagnosis... hang in there.  

It doesn't just get better.  If you let it grow you... if you let the Lord use it to make you better... if you fight the temptation to be bitter...  it gets awesome.  

Thanks be to God!

Monday, December 10, 2012

The Gift

We had a great weekend.  Eric's parents, my Mom, and our little family had a great time watching the kids ride bikes, pour dirt on each other's heads play in the sandbox, and watching Eric and Dad hang some more Christmas lights.  We shared much family time around the table, talking and laughing, and just enjoying being together.

The best part of the weekend, by far, was realizing that I've already received all the Christmas presents I could hope for.

There isn't a picture of them.  I can't cut and paste a link to them on Amazon, Ebay, or any other mass-selling site.  But I can tell you that the rest of the family is enjoying them, too.

For the first time, Ryan has been waving at me when I wave at him.

He's been trying to tell me what he'll do today.  It's in broken sentences, and I can't understand it all, but he's trying.

He's been expressing his preference using the correct pronoun off and on.

He's hugged his brother several times, saying "I love you, Richie."

Richie hugs back, telling him his brother he loves him, too.

Every morning, when Richie and Maelynn see each other for the first time, they run and hug and proclaim their love for one another like they haven't seen each other in weeks.

And you know what else?

God has set the stage for our church to be prepared to minister to and accept anyone who wants to visit.    He has blessed us with a body of believers that is serious about carrying the gospel to the community and beyond.

Guess what else...

I get to be a part of it.

Our family's arrival at Redeemer was not only providential for us, but for every person, young or old, who has or could walk through the doors even today.

No, it's not a fancy program with a big budget.  It's the first flame that started with a tiny spark... a phone call from a weary family.  It's grown to a pilot light... and sometimes that's the best thing.  An awareness that we're not all alike.  Awareness that while we're worshipping, shaking hands, and maybe even looking forward to lunch, someone is at home.

Maybe they're homebound.  Maybe they're physically incapable of driving.  Maybe they're afraid their child will bolt or wander.

Maybe they're just too weary to be looked at that way again.

Maybe it's you.

But whether the bonds be physical or emotional, they are bonds. and maybe... just maybe... a warm welcome, whether it be over the phone or in person, backed with action will make a difference for the better.

Thanks be to God for his love... and for Redeemer.

Wednesday, December 5, 2012

I'm the Crazy One!

This "crazy" thing is still sitting on my head a bit.  I can't stop thinking about ways that Ryan is a bit more free than I am.  Maybe this social filter that most of us possess causes us more trouble than it's worth!  So, being my silly self, I decided to share some of my personal favorite reasons that my neurotypical self is the true "crazy".  

Reasons the term "crazy" applies more to me than to my son...

I insist on letting the kids do something else... even stay inside... so that my house will be all together.  Who wouldn't rather be outside?

I drink what is essentially professionally rotted fruit juice.  And it's a TREAT!  What? Wouldn't a nice glass of cold apple juice, even from concentrate, taste a lot better?

I wake up on mornings when I have to go somewhere and pull out a little bag and a cup of brushes.  I stand in the bathroom dusting and painting this stuff on my face until I feel better about how I look.  I'll even give up some sleep for this process!

I worry about what others will think.  I hesitate to say what I really think when I know someone will disagree, and frankly, the thought of a confrontation strikes almost as much fear in my heart as someone with a gun in my face.  Really?  Why in the world would I be so worked up about something like that?

I stick these little metal forky things into the holes in the wall that someone else made, trusting that this electricity stuff will come out in just the right amount to do whatever I need.  I trust that it won't burn my house down or blow up whatever holds the cord.

Let's not forget motor vehicles.  I strap my loved ones in a machine built on an assembly line and hurl our bodies down the road at, let's be honest... speeds up to 80 miles per hour.  I trust that the middle pedal will stop thousands of pounds of steel before I hit anything.  I even participate in the crazy thing called a four way stop, where everyone has to depend on each other knowing the rules and stopping when they should.

I wear uncomfortable things because everyone else will be, too.  What in the world is wrong with my jeans and long-sleeve t-shirts? I'm covered, I'm clean.  It's not like I'm wearing a potato sack.

I stay up when I'm tired and continue to try to work or play, knowing I have to wake early the next day.  It would be far more effective if I just curl up wherever I am when I get tired, no matter where it is, and snooze.

I've worried and fussed and run around trying to, without even realize it, earn my own righteousness in everyone's eyes.  I've done this to the detriment of my own blood pressure.  Without even realizing it, I've insisted in my heart that I must be the hardest worker, the calmest, cheeriest mother, the smartest, the most dependable, and if I'm not, I'm worthless.  I've done this while proclaiming with my mouth and thinking that I believe that any good, any righteousness, is a God-given gift.  Yes, I should do my best... but I have limits.  I'm human.  You'd think I'd have a good handle on that by now, but that's just not how it works.

Most of these things were silly.  I'm not going to stop using my vehicle, and I'm certainly not letting go of makeup and electricity and the few social graces I do possess. But maybe we could all use a lesson from Ryan and let go of some of the anxiety we cause ourselves.  Oh, we say that others cause us to be anxious.  But in reality there are a lot of things that, if we step back and take a good look, we can replace the belief that we must be and do it all or the world will fall apart with the belief that we can't.  That we can't, and that maybe that's the way it's supposed to be.

That maybe... just maybe... we're supposed to be trusting and depending on the One who can see it all.

Let's all let go and have a merry time going about our Christmas prep, shall we?

Thanks be to God!

Tuesday, December 4, 2012

TIME for a Change.

We have Autism Awareness bracelets.  We have a yard sign.  We have two autism walk t-shirts apiece, and will acquire more.  We have signs for our cars.  We have puzzle piece Scentsy warmers, we have blue lights in our porch and carport lights.

I have and will continue to write about autism and how if affects our family.  It's what I know about, because it's what I live.  It's so much of our lives.

The truth is, having a child with such a prominent difficulty, whatever it may be, ranges from devastating to exhilarating.  So many times you hit both extremes of that scale in one day... sometimes in one moment.

There are times when he is screaming, yelling, and is in a swirling torrent of terror, frustration, and anger, and then, quick as a flash, he turns on a dime.  Two or three times in the past week, he's been in full meltdown mode, complete with real tears, when he turns to me and says "Hi Mommy" just like he hasn't seen me all day.  One time recently he even said, "Why are you crying?"  Well, I was crying, so I kinda thought he might be asking me.  So I explained.

The next time he did that, I began to think that it might be because he doesn't remember why he was crying.  See, Ryan hardly ever uses the correct pronoun.  "You" means "I" or "me", and so on.  So I wonder... does he even know what's going on at that point?

I really don't know.

There are so many things we just don't know.  But in the midst of them, we still keep plugging away.  Day by day, drive by drive, session by session, moment by moment, we keep going.  Keep learning about him and helping him learn about us.  But there is still so much that could likely remain unknown. The big improvements are few and far between, and they're often subtle.  Things any other parent would completely take for granted.  So easily lost in the bustle of life.

Today, I had a few great moments.  One was talking to the mother of Richie's best friend from school.  Such a sweet mommy moment I just haven't had the pleasure to experience, though Ryan has been in the same school since he was three.  I mean, just look at that face!  How can you not want to play superheroes with this kid?



Then, in the grocery store, Maelynn fell asleep so hard that I could only hold her.  I had forgotten to get chicken, and with my temporary load, mother volunteered to go back and grab some while I stood still in the produce department.  Her soft, baby-chubby face snuggled into my shoulder, I was still enough to hear the music.  "My Favorite Things" played, and as I nuzzled her sleepy face, the ache of holding her nearly three-year-old, completely asleep body faded in an instant.  These times will grow fewer and farther between, but that sleepy-snuggly stuff is definitely one of my favorite things.  That sweet face just learned she loves "spwinkoes" on her ice cream right before I took this:


And then, as I opened his folder this afternoon, I saw Ryan.  Well, there wasn't a picture of him, but he had placed his heart inside a folded piece of construction paper with a Christmas tree cut from wrapping  paper on the outside. 


Just as we were getting past the shock of that wonderful gift, I saw this: 


He was pretending... yes, I said PRETENDING... to cook.  He made one of the dogs a plate of a plastic food: a chocolate donut, an apple, and a potato.  He sat it in front of her and said, "breakfast" and then went about his "cooking".  This is the same dog he's not been able to tolerate in the past, and has recently not just tolerated but hugged her and told her he loved her.  Just this year he's started telling me... looking straight in my eyes... "I love the Christmas tree."  

The mountaintops are at times scarce, but when they do arrive they are wonderful.  There are long stretches of time filled with much work and frustration when it seems as if we're doing nothing for him. There are times we wonder if life is getting any easier for him, and there are definitely times when we wring our hands over the treatments that are out of our reach.  We definitely agonize, think, study, and pray over our decisions.  

I will keep coming here, sharing our story, hoping that we can share the hope we find with someone... anyone... who needs to know they're not alone.  To give someone a sliver of light in an otherwise dark, scary place.  I've often said that picking treatments and avenues of thought, even, for our child is like looking for a nickel in a six-lane freeway while blindfolded.  

But I will also come here and write as long as these children and adults are misrepresented.  As long as they're turned away at the door.  As long as parents are told that their children "cannot."  As long as there are people who think of these kids as a lost cause, too much trouble, or, in an equally painful blow, completely ignore their presence, hoping that they and their parents will slowly get the hint and fade into the black.  

Because he's their brother.  He's their hero.  He's my firstborn.  He's my button-pusher, my elevator lover, train fanatic, and Elmo fan.  He's my drummer, my noisemaker, my snuggly little tickle-bug.  But he also has autism.  

I try not to jump on the bandwagon of complaint and mud-slinging.  But I do believe in speaking the truth in love.  I also believe that we must defend those who are not as able to help themselves.  

That said, I am hurt and disappointed in the least to see that TIME magazine has referred to my child and so many other people "crazy".   Yes, the article itself is nicely done.  But in this day and age we know that so many folks don't make it past the title. In other words, we know better. If we know better, we should DO better.  

I'm not making a plea for vengeance. That is actually quite the opposite of what I'm hoping.   I'm simply looking at those of us who know and love people with psychiatric issues to look at this and heed it as a call to action.  As a hundred-foot tall neon sign that says "WE ARE NOT DONE."  In my life, that means no more even thinking that maybe this blog doesn't matter.  It may only matter in the same way a single feather matters to a pillow, but it does matter.  That smile you give and hand of friendship you extend may not prevent anyone else from ever being lonely again, but it means the world to that person, and will likely surprise you with its blessing. 

Accepting that different or difficult child or adult into your classroom, your Sunday school class, your church service, or other community or friendly event matters.  It may not change the world, but it very well may make a day.  Or change a life.  

Thanks be to God for the wake up calls.  

Monday, December 3, 2012

Trumpet and Cup

It's that time of year again.  We've found a home for the toys we've outgrown, and they're in the van waiting to be delivered today.  As I sorted through the storage ottoman in the living room, I came across  the top to a music toy that was one of the things Ryan seemed to really enjoy as a baby.

The little plastic trumpet that sits atop a totem pole of musical instruments was a gift from my aunt and uncle, and it was the perfect band director's kid toy!  All three of our babies enjoyed it.  If you think about it, there's no wonder why Ryan enjoyed it.  It plays music, has a little keyboard at the bottom, a tambourine in the middle, a drum, and of course the trumpet rattle with a happy face.



As I sorted, I happened to turn it over and notice that our last name is still partially on that top piece in black marker.  Odd that it would be on one piece but not the rest.  Then I remembered why.

Ryan was maybe between 18 months and 2 years old when he became a little attached to this toy.  He was my first child, and I didn't think too much of his hatred of stuffed animals.  Well, hatred is a strong word.  It was more of an intolerance.  He had so many nice ones, but every time I tucked a stuffy into bed with him, he instantly sat up and threw it across the room.  I can actually remember joking about it and not worrying too much with it.

I can also remember the morning that we couldn't get the trumpet toy out of his hand to go to church.  Seeing a fit... or a meltdown... in the future if I fought it, I quickly took it from him as he screamed and scrawled our name on it, handing it back to him.  I just didn't feel like fighting him about it.

Sometimes Ryan's baby things are the hardest things to look at.  They're in the before time.  The time when all we knew were people who thought our baby was the cutest, sweetest kid around.  No problem.  But as he grew, things changed.  It was so hard to listen to people who tried to tell us that something was up.  And now it's so hard to accept the fact that we didn't know.  It's hard to remember things like this little trumpet and the stuffy aversion and see so clearly that everyone who said anything was concerned.

But we didn't know what to do with that information.  There is no handbook.

We were on a teacher's salary.  Our doctor had his opinion of what we should do, and somewhere in between denial and money fears, we didn't pursue those avenues.  At the time we felt horribly guilty for that, but we felt horrible about everything we did and didn't do for him.

We did get speech, occupational therapy, and behavioral therapy from ECI.  We did our best to absorb everything we could learn from those in-home sessions, and took so many things from those early days that we still use every day.  We read, we searched, we played with him, we took him places, we talked to him.  We snuggled him, loved him, and did everything we could to be good parents, and we still do.

Now we have two more kids, and for these two milestones seem to magically appear.  They talk to and with us, call us mommy and daddy, play with each other, beg to play with us.  They show off for us, saying "watch this" and performing feats that surely they believe would amaze even the bravest of stunt men.  They ask for what they want with words, and the only times they've hit themselves is when they were trying to be like their hero.

The more I see the contrast, the more I live with Ryan, the more I see that for Ryan, autism is just a name for his set of behaviors.  It's a ticket to getting the help we need, and it's less of a kick in the gut and more of a bridge to understanding him and helping him understand the world.

There are so many of his traits that endear him to us and those who take the time to know him.  The quirkyness is great.  When he lays his chin on my shoulder from behind and whispers "I love you", when he says "you will tickle" and lays across our laps, wanting to be tickled, when he rattles off movie quotes and sings songs a bit unintelligibly, when he lays his head on my shoulder... in so many ways we can see his love for us.  The way he hand-flaps as he stims actually makes my heart smile!

But the anxiety... the upset... the yelling... the inability to tell us what's wrong... the inability to accept change... the slavery to routine... the things that seem to have him trapped at times... those are the things I wish he didn't have to deal with.  Those are the heartbreaking things.  His face when he's confused and scared over something as simple as the wrong jelly in his sandwich or doing the bedtime routine out of order is wrenching.  No child should have to be that afraid of anything... much less something so simple.

This is our reality.  This is our cup.  It's Ryan's cup, but it is also Eric's, Richie's, Maelynn's, and Crystal's.  It is his grandparents', his aunts' and uncles', and his church family's.  Everyone who loves him helps us drink a little of the cup. Everyone who extends a hand, volunteers in CE, everyone who loves on and helps another family with autism helps us drink our cup.

Even you, by reading and allowing yourself to be educated about these things, are helping us drink this cup.

So, too, has everyone who tried to tell us there was something going on.  Everyone who has ever worked to help him integrate into whatever was going on, everyone who has prayed for us.

Thanks be to God for those who help us drink, and for the scrawled markings on a simple toy that reminded me of the intricate weaving of our lives with others.


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