Saturday, December 28, 2013

Santa's Wonderland

We've become pretty brave this year.  

With an upcoming trip to Disney World with Daddy's work (my kids are going to think you can only go to Disney with a band) we've felt the need to push a little.  With the help of an incredibly helpful home trainer through our school district, we've pushed and have done some things with the kids this Christmas that are completely out of our comfort zone.  

Okay, so HOME is our comfort zone.  Moving on... 

There's this amazing place called Santa's Wonderland that is only about an hour and twenty minutes from here.  We'd never even considered it.  Ever.  Because that's crazy.  In the past it's been completely prohibited by the sheer expense of it.  This year, as we sat around poking round the internet after dinner one night, we saw that a friend bought deeply discounted tickets to this cool place through LivingSocial.  It was, if we were careful, within our reach.  

About halfway we stopped for some fast food.  Part of our cost and sanity-saving measure.  There was nothing but ice cream that Ryan would have eaten at the park-thingy, and I wasn't sure we could afford to eat there anyway.  We planned to be there at least twenty minutes early, and it was a great thing that we did!  We got a decent parking space, but still had a good walk and didn't have to take one of the three shuttles we saw.  Ryan was quite disappointed.  A good bus ride is a wonder to him. 

There was a bit of confusion in the line as to which line was a line, which we should get in with LivingSocial tickets, blah blah blah.  But it was our first line.  

We didn't lose him.  He didn't really lose it.  

There were moments I thought we'd surely messed up in trying this, but I kept pushing the panic down and keeping him with us.  He pings from here to there and wants desperately to keep moving constantly.  We made it.  He made it.  

After about twenty minutes or more (and remember, we were early and the line was LOOOONG) we rounded the corner quite like cattle and were in, guess what... Santa's Town's gift shop.  Straight through the gift shop, we stepped back in time and into an old-fashioned country Christmas.  A little village of wooden railed food shops broke only for a stage with a holiday crooner. Off to the left waited several young ones to see the guy in the red suit, and to the right was our first destination... the best part.  

Hey Ryan, say cheese!
Ryan, how about a pose with sister?  Such a big brother.

Richie the Red
The queue marked by tiny white lights snaked over dirt and an open wooden bridge.  There were plenty of lights to keep us busy, and the biggest surprise... RYAN MADE IT.  There were no meltdowns.  He was squirrelly, pinging from here to there and desperately ready to keep moving.  But he made it.  He held it together, with the help of the three of us keeping him with us, and after about twenty minutes it was time to get on one of the flatbeds and ride through the elaborate light displays.  

He saw the wooden steps up to the trailer and froze.  "NO!"  

I got on ahead and showed him it was okay, and he did climb up, still proclaiming his opinion.  As others came on to this very popular attraction behind us, I did something that usually makes things worse.  I put my arms around him and pulled him close in a desperate attempt to convince him that this was okay.  "It's just like a train, sweetie.  Look, the truck pulls the trailer just like a troublesome truck!  It's like the people train without a roof." 

He relaxed and I asked if he'd like to sit beside me or on my lap.  On my lap it was.  The train thing must have been convincing enough, because once that truck began moving, he was good to go. 

The best part, other than the amazing lights and the fact that all the kids LOVED it, was Ryan's performance.  

No really.  At one point, the masses of bright colored lights reminded him of one of his favorite movies, Madagascar 3.  Much to my surprise, he stood to his feet in the middle of this flatbed lined with hay bales full of people, and sang at the top of his lungs the song that Marty the zebra sang.  

From my rather large 8 year old child, with people we did not know at all lining this trailer with us, sang, "RAT TAT DA DA DA DA DAT DA circus..."  and the rest of the song.  

All I could do was bury my face in his back and laugh rather nervously.  But what I wanted to do?  

I wanted to tell all these poor stunned folks how long we waited for his first meaningful words.  I wanted to tell them how being here is a dream come true both financially and ability-wise.  I wanted to tell them how many hours of speech he's logged and fought through to be able to form those words so clearly.  How amazing it is that he remembers movies and songs the way he does, and how this is an expression of how incredibly excited he is.  

I wish I could have concisely explained how amazing this moment was for us.  How proud I was of him.  

But in that moment, and several others along the way this Christmas season, I've come to see why Mary treasured these things and pondered them in her heart.  

No one can ever understand like we do. 

Maelynn riding a pony, making her aunt proud!
Our new family friend, apparently.
Oh, the petting zoo! 

I can explain all these things with pictures and maybe even video, but you can never really, truly feel my joy at watching the kids have fun.  How tickled we were when that goat tried to eat Richie's shirt, or when the calf mooed right behind (and I mean RIGHT behind) Maelynn's head.  Can't really explain the relief when we got through each line, and the thanking the Lord every time we were able to calm him... to help him find himself again when he began to get upset. 

Thanks be to God for the courage to just try it, and for the amazing time we had. 

Monday, December 23, 2013

The Smallest, Biggest Gift

As a little girl around Ryan's age, one day on her day off mom got us dressed to go to the hospital.  That's right... my mom, who worked nights at St. Anthony's in Oklahoma City got us dressed and took me to the hospital.  She worked hard, and on the days she was to be home, there were precious few things that would take her back downtown to saint's.  

She explained that we were visiting someone she loved, who had been very nice to her.  As a single mom with a much less than supportive ex, friends were mostly from work.  There just wasn't time for much friend-making outside work.  She told me that this lady was a nun, one who had been a patient of hers.  She was very sick, and she wanted to check on her and take me to meet her. 

Sister Heinley was a nun in the Order of Saint Francis that used to somewhat run the hospital.  I don't remember at all what the illness was, but I do remember walking through the tunnel from the parking garage wondering if she'd look like the nuns in The Sound of Music.  

We made it to the room, and there she was, in her hospital bed.  There were flowers and cards here and there, and mother introduced us.  I remember, from this point, learning what generosity was.  

I couldn't pick her out of a lineup, but I recall her warmth, her smile, and the way you instantly were part of her world, like you'd been there all along.  She pointed to a small wrapped box on the windowsill.  She said, "That's just for you."  

After a quick glance at mother to ask if she was serious, and if it was okay, mom told me to go over and take it.  Honestly, I'd never met someone and in the first two minutes they had a gift.  Just for me.

 There was only one box.  I opened it, and this little guy stared back.  

This guy has been with me through about sixteen moves since that day in the mid-eighties when he was given to me.  It's just a simple candle holder, a couple inches tall.  Nothing fancy or complex.  The real reason he's hung around has nothing to do with his aesthetics or value.  

Sister Heinley, Mom told me on the way home, loved giving.  And since she was ill and unable to buy things or even make them to give people, especially children, the other sisters would make sure she had things in her room to give away.  That's right.  Instead of bringing her things she'd like for her to have, they brought her things so that she could give them away.  

Giving gave her such joy that being able to give was the best gift she could receive.  

As a child, it was amazing that she immediately thought I was special enough to warrant a gift.  The main reason I kept this guy so long was started there.  But now, as I'm the mama in charge of gifts for the world, this guy stays in my kitchen to remind me that this ability I have... to give even a jar of apple butter to a teacher... is a most amazing gift.  

And you never know what impact a little gift might make on a life.  

Thanks be to God for Sister Heinley, who I'm sure is rejoicing in heaven this Christmas... and of course, always the most thanks to and for the Giver himself.  

Monday, December 16, 2013

Christmas Survival Guide

Last week, I told you all about Nanny and pie on Christmas eve, and how she started enjoying a bit of Christmas before the day of.  I also talked about how now that's the best way for us to approach things. Over the weekend, I thought you might like to see a little more of how we plan to... and have been... having a bit of Christmas every day.

There are things here that are easily copiable, if you think they'll help you... and some of them might even stretch your own perception of how things should go.

If there's anything I've learned from Ryan... from autism... from parenting in general... it's that those perceptions aren't the most important thing.  Okay, so I re-learn that one daily.

Anyway, there are a few thoughts I've had between meltdowns (his and mine) and I thought I'd share.  Just remember as you're reading this that these are things we are currently working through in the trenches, not just throwing off the cuff at you as I neatly dress my children in their perfectly matching outfits and snap the most amazing Christmas card picture ever while baking the latest perfect Christmas treat.  Know that I'm telling you these things not from a stance of "look at me, I conquered this and you should be more like me and everything would be fine" but from the shards of thought I've pieced together while hoping my son will still eat the reheated Totino's and not scream when I tell him he's had enough.  I'm writing from the brain of someone who is riding the roller coaster (okay, being dragged by the truck of) Christmas with a child with autism.  And I'm sharing ways I've found that help me ride instead of be dragged.  Because that's what I'm hoping for.  Enjoyable, not vomit-enducing, scarring, and bloody.

Here goes...

1. There are 24 days of advent. Use them.  Trying to get a kid like Ryan to sit still and listen to the Christmas passages straight from the bible is like nailing jello to a tree, especially if you expect to read from Genesis straight through to the maps while those presents sit there unopened on Christmas morning.  If this is a huge tradition in your family, try to tweak it.  Break it up.  Start early.  We're using nightly readings from our Jesus Storybook Bible to get the message of the gospel in bite-sized, kid-friendly, truth-packed chunks.  They even offer videos, and you can follow them on Facebook, if you like.  They have a daily advent reading thing, too.  It's been helpful.  He still wants to sit and giggle, but it's shorter and the other kids are enjoying it.

2. Ryan has a need to know what is coming.  Our helpful home trainer suggested making a visual calendar of the things that will occur.  We're gonna try this one this year, especially when time is not as regulated when school is out.  It's also as simple as placing what I like to call "anchors" throughout the day.  When he gets up in the morning, I'll tell him he can have his favorite things at this and this time... say iPad after lunch and YouTube at 3:00.  Then he has something to go back to.  I have to stick to it, but it helps.

3. Shut the Pinterest window.  Seriously.  Now.  The closest I got, and it was a little too close... was having Ryan write "Merry Christmas" on construction paper circles... in pencil... to go inside clear ornaments.  It was NOT fun for him, but his teacher and two aides do so much for him that I thought it would be great for him to do something for them.  And believe me, that was enough to drive both of us up a wall.  Know that if you do try these things, it might go great, and it might end up going down in flames.  Give 'er a shot if you want, just be ready. Which reminds me...

4. Give yourself grace.  Be merciful to yourself.  Let go of a few things.  Do a few things early.  Usually make cookies Christmas eve?  Go ahead, plan to do that.  But make some and have them ready prior to that.  Or let the Keebler elves do the work for you.  Santa doesn't care, does he? If you can stand it, bake those cookies early.  If the 24th rolls around and all is going well, go ahead and make some more.  But no guilt if you don't.  None.  If anyone tries to make you feel guilty, they're wrong.  You know what your family can handle.

5. You know your kids.  Stand up for who they are and what they're capable of.  If there is an outing they simply will not do well with, realize that you do have a choice.  It may not seem like a choice, but you do have a choice.  Do what they're capable of doing, stretching the envelope as you will.  We're about to do some major envelope-pushing this week with a special trip to a Christmas-themed place.  We shall see.

6. Don't be afraid to try.   Give it a shot.  Going to the mall might be an awful experience, yes.  But maybe twenty minutes would be fun.  I've done a lot of just trying it on the basis of if not now, when.  If I don't try these things with him now, will he ever try them?  There is a lot of scary in the world, yes. But there is also a boat-load of amazing.  And I want to give him that chance to see the amazing.

7. Be willing to accept some of the scary.  Not life-endangering scary.  I mean the "well, they'll look at us funny" and the ever-popular "we might disturb some folks with our noise" scary.  Go somewhere you've always wanted to take them, but were afraid to try.  Or had forgotten to try.  If it's within your reach, why not?  If you're up to it...

8.  If you're not up to it, admit it.  But don't make that a crutch.  Last week, I considered going grocery shopping with a short list after therapy because Ryan needs the practice, but it was raining and cold, the kids were hungry, and I wasn't ready to deal with the whining.  We forewent that trip and went home.  If you don't feel up to it, see #4.

9. Realize that the holidays are hard... period.  It's an emotional roller-coaster time for everyone, and when you add that to your everyday life with a kid who is on the autism spectrum, well... buckle your seatbelt.  The most wonderful time of the year is also the most stimulus-packed time of the year.  From the colored, blinking lights to the peppy music to the sugar-packed treats, it's a wonder any of us come out of December with any nerves or clothes that fit.  Now imagine that your world is guided by these comfy boundaries we like to call routine, and smiling adults remove these soothing bumpers and replace them with very little structure, leaving you to flounder for a boundary here and there.

10. The meltdowns will come.  Stay calm.  Don't take them personally.  They're not aimed at you, or your aunt Bessie whose pretty vase your kid just pushed to the floor to watch it shatter.  Remember, above all, that your holiday celebrations and traditions must be worked around your sweet one's autism, not the other way around.  And aunt Bessie probably knew that might happen.  She loves you, or she wouldn't have invited you.  Explain to those who don't know, if they're really interested.  

You might disappoint some people by not staying long enough, or by saying no to that one thing they wanted you to do, or wanted you to attend.  That's okay.

More than anything, remember what we're celebrating.  We're celebrating the start of our redemption.  Others' judgment of you and your decisions, your child... has no teeth.  Christmas is God coming to save us from our inability to get it right, to have Christ stand in the gap for us.  We do Christmas as a remembrance and a thanks for that, and trust me... he sees you in your struggles.  They're not lost on Him.

So do what you can, out of a heart of gratefulness and wanting to help tell the story to your kids... and of course, for fun.  And for goodness' sake, give yourself a break.

Thanks be to God for Christmas, its traditions, and especially for the grace and mercy it brought.

Friday, December 13, 2013

Christmas Eve Pie

As far back as I can remember, Nanny made everyone's favorite pie for Christmas.  Call it one of our gifts, from her heart and her kitchen to our mouths.

I can see the round breakfast table piled high with deliciousness now.  And she started the day or two before Christmas to make sure everything was ready. That's the cruel part.  When you walk by knowing that they're for Christmas dinner, but they're there NOW and they look SO GOOD.  I can't remember if I never asked, or if she forbade the touching of the pies.  Maybe it was just an understood rule that we needed to leave them alone.

Either way, fast forward to dinner.  After munching down on corn casserole, green bean casserole, turkey, all those jello salads, and of course her signatures... mashed potatoes and ham loaf.  Those last two could end wars (or start them).  My father, who lived a world away at that point, only had nasty opinions to share of Mother's family.  But ask him about ham loaf, and his tone completely spun around.

By the time we got through with dinner, there was no room for pie.  Half the time, we'd go to the living room, open gifts, take a nap, then go back for pie.  And I never questioned it, because well... Nanny was Nanny.

Then, one point when I was in college, home and helping cook, I got a surprise.

It was one of the sweetest times I remember with her.  Just the two of us in the kitchen, making messes and memories while we put together the same dishes our family ate since the fifties.  We were tired.  Our feet hurt, and we were hungry.  We'd seen the pies all day, but Christmas was tomorrow.  Not today.  While we discussed what to eat, she said, "I don't know about you, but I'm having some pecan pie."

I thought she was kidding!

Nope, and she offered me the same opportunity.  I sat down with my chocolate-peanut-butter-coconut pie, and a cup of cider or coffee for both of us.

Last year, Christmas was at my house on Christmas day for the first time.  We did things pretty much the same way, but I forgot that last part.  I planned to do all these things, and they were great ideas... in theory, at least.

But I have three kids, and there is a lot of time surrounding Christmas.  One of my kids has sensory issues to the max.  Therefore, most of my plans went flying out the window.  The things we did do went okay, but there was too much when we did what we planned.  We didn't prepare Ryan the way we should have, wearing "this is how I think it should be" blinders.

I meant well, y'all.  I truly did.  The problem was that I tried to make my wishes and autism's reality run side by side.  I silently and subconsciously refused to let it enter my mind that these things needed tweaking at best.  At the last minute I was forced to either cancel plans, or throw ideas or activities out the window, or completely rework them.  It was fun, don't get me wrong.  We did enjoy ourselves.  But there was so much more that could have made it better for all of us.

Then, one day when Maelynn asked for gingerbread men, I started to tell her it wasn't time yet.  December had barely begun, after all, and there was a lot of time to wait to make them last till Christmas.

Call it what you want, but all of a sudden, I remembered that pie with Nanny that became a tradition.  The sweetest time I had with someone who was... and still is, though she's no longer with us... so precious to me reminded me that it was just flour, sugar, and other random ingredients together.  Make the cookies.

Since that day, we've tried to have a little Christmas every day.  Whether in our advent readings, or something as simple as putting up another ornament or baking another treat, or looking at Christmas lights on the way home, I've tried to have at least a little every day.

Think about it... we're celebrating something that changes our lives.  Our very every day lives are molded by the birth of that baby.  So why not?  Why not cut the pie?  Bake the cookies? Make the gingerbread house?

I can no longer have pie and coffee with my Nanny.  But I can remember one of the later lessons I learned from her... to enjoy it.  Now.  To spread out the joy, make it fun for us and the kids by taking these things as we are able, not make it happen on the DAY of Christmas.  Give them the opportunity to take it in slowly, and in a way that is more meaningful to them than to cram it into one overwhelming, pinterest-worthy day.

Thanks be to God for pie and coffee, for the lady who made them special, and for the little ones I get to share with now. 

Tuesday, December 10, 2013

Empty but Full

He lumbered out of the van, his usual, not in a hurry self.  The aid helps him out, and then I start telling her why we were late this morning.  In the midst of a flurry of explanation, frustration and weariness spilled over my cheeks.  Before I knew it, before I could stop it, I was a blubbering mess in the drop-off line.

All the way to school, after a morning of if/then statements, much self-injurious behavior, and botched transitions all over, I grumbled in my heart about every person who told me that I was overreacting at the beginning.

What?  Yes, so many people told me to chill, not to worry, he'd grow out of it.  His behaviors aren't that big of a deal, lots of kids do that.  And just look, I know so and so who read to his little boy for twelve hours every day and he only ate sea kelp and he snapped out of his autism.  Or the old one about how he looks just fine, how can he be autistic... or the one about how I spoil him.  That's my favorite.  Try making him talk to you.  Make him eat that food.  You're just being too easy on him.

If you ever... and I mean EVER... come across a friend or family member who is on the cusp of an autism or other diagnosis... PLEASE do not peddle false hope.

Oh, I know.  You'd never do that. And neither would anyone else intentionally.  And hey, I may have done it at one point too before I knew what it was like.  Before I was in the trenches.  Before I knew what it was like to watch my child lay his hand on a hard surface and pound it with his fist because I didn't have the preferred macaroni and cheese... or because I had to take away the iPad... or because he wanted milk and I wouldn't give it to him without calming first... or because he had to work with his therapist instead of play with trains.

That would be before I knew what it was like to have every last request met with yelling or grunting and hitting of his own head.

It was before I knew what it was like to have him run SCREAMING to his room because we told him to stop the low-grade hitting or go to his room and calm down.

It was before I woke up every day praying that we'd all make it through the day without as much of this stuff... or just that I could handle it in a kind way.

It was before I knew what it was like to wish that I could just have a day where he could simply talk to me about his life, his likes and dislikes, what he'd like to do for the day, without the screaming and hitting... or that he'd just understand conversation like you and I do.

It was before I answered the same echolalic question in rapid fire... the same question, same answer... until I just asked him to stop asking that one question.  But then felt guilty because he WAS asking, after all.

It was before I realized how out of control everything really is... and that control is definitely an illusion.

It was before I felt the heavy-hearted guilt of that voice whispering, "If you had just read to him more... if you had sought that one treatment... if you were more organized... if you had just followed up with that one guy you couldn't afford... "

It was before I felt the sting of being at the end of my rope and having done and continue doing all I feel I can without cracking, then having to change and tweak it all with the energy and creativity I don't have left.  Because it's then that those stories of someone who "grew out of it" or "snapped out of it" really hurt.

My son isn't snapping out of it.  He's eight.  He's likely not gonna.

And that has to be okay.

If someone comes to you hurt, needing to talk about what he or she fears is happening with their child, please listen.  Please listen with an open mind, and hold judgement.  Please save the inspirational stories for a time when they're less desperate.  I know you mean well.  I get it.  But let me put it this way... telling someone who is finding out about their child's autism about how so and so cured their child, so there's no reason to worry is like having not eaten for five days, then sitting down to a feast... of cotton candy.

There's no substance. No promise.  No surety.  And it will let them down.

It's a hard reality, but reality is hard.  Be kind, yes.  Listen and love.  And cry with them.  But keep the stories of how so and so cured their child and they "snapped out of it" for later, when they've got a better handle on reality.

Some would look at this view and shake their heads.  Faith!  Where is your faith?!

Here's my faith.  Right here.  Ready?  It might be different.  Brace yourself.

I prayed for years that it wouldn't be autism.  But it is.  My faith is in a God who is sovereign, not who can be manipulated by my carefully-worded requests or my sincere heart.  My faith is granted to me by the same.  My faith calms my heart, my fears, and gives me wisdom and grace and mercy.  It is a gift; not a talisman.  God is my father; not a vending machine.  Prayer and bible study and what little obedience I have is an outflow of the love of a sovereign, caring, loving God.  They are not currency, used to buy what I need.

I have faith that Ryan and the rest of us are woven into a painstakingly constructed tapestry.  I have faith that the things we go through aren't wasted.

I have faith that God has plans for Ryan... for Richie, for Maelynn, for me, for Eric, and for our parents.   For his sister and brother in law, for my sister and brother in law.  And I have faith in God understanding the things I do not... and in that he hurts with me, and with Ryan when he is upset.

This morning was hard.  The past few days have been out of routine and therefore very screamy.  Lots of self injurious behavior.  But it will pass.

Tomorrow, Ryan will wake up and he will still have autism.  I've begun over and over a quest to let go of my preconceived notions and to meet him where he is, for who he is.  It's still hard.  There will still be days when I don't know how much longer I can do it.  But at that moment, there is always hope.  The darkest night is before the dawn.  But I've given up hoping that the morning light will shine on a neurotypical Ryan.  

Instead, I hope the dawn will shine on a mama who embraces who he is and guides him to be all he was meant to be, lovingly and carefully.  And when I can't feel the hope, I pray that I'll keep putting one foot in front of the other.

And tomorrow morning will come, the schedule will be the same, the challenges will be there.  But so will faith.  The same things will likely occur, but so will the sun's light.  If God loves me enough to bring the sun, just close enough to warm but not close enough to hurt me every day from the beginning of time, surely I can lean on him for the grace to guide my son through this world.  After all, he has incredible insight to doing the mundane with joy.

Thanks be to God for Ryan's asking for a hug this morning when he saw Mommy couldn't take it any more.  And for the way his arms wrapped around my neck, and for letting him hang on for a minute in a way he usually doesn't.  Thanks be to God for that gift, because it's exactly what I needed to start over again.

Saturday, December 7, 2013

The Bright and Precious

"All the bright, precious things fade so fast... and they don't come back." ~ Daisy Buchanan, "The Great Gatsby"

It's my spot.

On the couch, right in the middle.  I can see the tree, the multicolored felt "Merry Christmas", and the lights I always wanted lining the roof just out the window.  We're all still in our warmest pajamas, still wishing and hoping for snow.

I always wanted this.  Two boys and a girl, this husband, this house, this dog.  This mom.  Always.  This is what I wanted as a young girl in the backseat fighting tears as we rode back to Kansas, with Mother, Nanny, and all my other comforts in the rearview mirror.

Home.  Just home.  Warm and together.  No looming threat of separation.  No real drama, other than the usual occasional sibling spat and the minor marital snit.  It happens to all of us.  But the big thing... there's no remembering not to talk about the people dearest to me to avoid those flashing blue-green angry eyes and the storm that followed if I dared admit I missed them.  No pretending to be happy to be there.  No trying to forget that my comfort zone is six hours away.

It's all right here.  Eric is in the floor with Maelynn, Ryan's head is on my lap, Richie is snuggled on the other end of the couch.  I'm in my spot while we watch more stories of the little blue train.  Also what I always wanted... boys who love trains.  We will travel a bit, but together.  As a family.  My kids won't be pulled away from me or their father for more than a day's work.

They know nothing of that life.

They know nothing of leaving their daily life, people included, and going alone to very unfamiliar territory to live as a guest on the couch.

They know nothing of having to pretend.  And fear?  They have fears... but thank the Lord their father isn't one of them.

Their father is warm, caring, loving, and not the least bit unstable.  And Lord willing, they will wake up right here Christmas morning.  Their stockings will be right here, their presents, their clothes, their toys, their everything... right here.

It's nothing short of amazing.

It's all I ever wanted, right here.  Yes, there are flaws.  There always will be.  But it's still wonder-inducing that I have all this.  In all that wonder, there's this desire to drink it in.  Hold on as much as possible.  Carve the memories into our minds and onto our hearts.  DO IT ALL.

Add that to Pinterest and I always feel like the time is slipping through my fingers without even close to enough care and effort to make those memories.  Make these days count.  Help them know how great this is, make sure we've made every effort to show them the amazingness of Christ's coming and indulge their childhood wonder at the other things, like the lights and the reindeer and the pictures of the guy in the red suit.

Of all the things I know in my head I want them to understand, I'm stuck in the frame of mind of a kid who always wanted all this.  And the achievement addict in me wants it planned to a T.

There's just so much of it that I can't plan.  And there's so much of the things I can plan that, if I hang on too tight... the making of the memories becomes the crushing of the wonder.

Time is a funny thing.  The tighter you hold it, the more you panic about it running away, the faster it runs.  And the more you let go, look around, and laugh at the funny things, let the tears flow when they want, do the fun things when they'll be fun, and not feel guilty about doing the things that have to be done, the more it offers to stick around in your mind.

Balance.  There are things that must be done.  The mundane... the vacuuming, the dishes, the laundry... all have to be done.  They need keeping-up.  But so do the things that are fun and special.  It all needs time, and it all must have what it needs.

It's when one or the other takes over that the time begins to be our enemy.

The clock's tick, the flipping of the calendar are gifts.  Each changing number is a reminder that it won't stay this way.

When I was a kid, it was a reminder that I'd be home again.  That someday I'd be able to choose where I spent my time.

As an adult, it's a reminder to grab the camera.  Put the dishrag down and watch her dance.  Plug in the vacuum because they'll be here soon.

It's a promise that where we are is not where we will always be.

January will come.  The 25th will be here and leave in a breath.  Each day is a little Christmas.  Every cookie we bake and present we wrap, every time we listen to the Chipmunks sing "Jingle Bells", every time we turn on the tree and the lights outside is a lump in my throat.  It's just so wonderful.  Too wonderful for one day.

But why?  We don't have the best lights on the block, the biggest tree, and my degree in music tells me the Chipmunks aren't the tippy-top of the music world.

Because our Father, who art in heaven, gifted us with it all.  He gave his son, his precious companion, so that I could not only have it, but so that I can see it all for what it is.  So that I could have a grateful heart.  So that I could see the importance of the manger, and all the beauty that it inspired.

Thanks be to God for the right now, and for the then that gives the gratitude.

Tuesday, December 3, 2013



  [aw-tiz-uhm]  Show IPA
Psychiatry. a pervasive developmental disorder of children,characterized by impaired communication, excessive rigidity,and emotional detachment: now considered one of the autism spectrum disorders.

That's how they want you to see him.  Cold.  Detached.  Completely submerged in himself.  

But I don't think so.  This is what I see. 

He's hilarious.  He is pure silliness.  

He loves us.  

All of us.  Not just the ones who meet his needs. 

He's not your typical big brother, but he is Richie's hero... and they are best of friends. 

He shares, he loves, he snuggles, he hugs.  

He misses those he loves when he doesn't see them.  He remembers them.  Asks for them. 

And he enjoys them while they're around.  

My son... my beautiful, precious son... has severe autism.  There is a laundry list of things he cannot yet do, and many of them are starred with a subtle "might never".  

He is different.  Markedly so.  There are behaviors he exhibits that are challenging, and he has difficulty expressing his emotions, needs, desires, and thoughts in traditional and socially acceptable ways.  But mark my words... HE IS NOT DETACHED.  

His behaviors make it seem that way.  But he is everything but detached.  

He just needs time.  

Once he's had the proper time, you're in his heart and mind forever.  He never sees my great aunt Gladys Mae, but you can see how he loves her.  He insisted that she stay with him at the table.  He couldn't get enough snuggles while she was here.  

He still asks for my Nanny, who passed away three years ago.  "Want to go to the house on the hill?"  and "You want to see your Nanny?" are not uncommon questions for him.  

He loves.  He feels.  He doesn't show it the same way.  You have to be willing to leave social convention at the door, and be flexible and willing to hear with new ears, see with new eyes.  

You have to be willing to let him show you his way.  

If you do, if you give the time it takes to get to know a kid like Ryan... you will never regret it.  

I'm completely addicted to every time he throws his arms around me, kisses my cheek, and the few times he tells me, "I love you mom."  

No, not detached.  Everything but detached. It takes some time, maybe a little effort, and a little open-mindedness to see the attachment, to recognize it.

To tell the truth, he's absorbed in himself and his little world just as much as I am, but without the social  worries and pressures that go along with that. 

Thanks be to God.

Monday, December 2, 2013

Do No Harm

Just when you think you've settled into the turkey leftovers and coasting to Monday, one of the kids gets hurt or sick and sends things into a tailspin.  Our oldest sent us running to ER on Saturday night.  He just hadn't been himself all day, and had been limping a lot.  

Usually he wants to be around the family whatever we're doing, but this time he just laid around.  

When I had to carry him out to potty at bedtime, I knew he was in need of help.  

Yep, that's our oldest.  He's an Australian Shepherd or a sheltie, or more likely a mix of the two.  For ten years he's been our pound puppy.  

He's just as cute as our human kids, no? 

This guy, our Jedi, was named after the coolest and smoothest guys I could think of.  He was the only dog in the puppy part of the pound that wasn't barking when we visited.  From the first time he sat in my lap on that cold tile floor of the pound, he's been my buddy.  My Jedi, j-dog, J to the D-O-G, Poochatronic, or fuzzy britches (as Nanny called him) is older than our kids.  

He was and is THE BEST kid dog anyone could want.  He loves his babies.  When Ryan came home from the hospital, he wasn't sure about not getting to see me much, but he loved his new baby.  He even tried to pick up Ryan's binky for me one time!  

As you can see, wherever Ryan was is where Jedi wanted to be.  

Ryan hasn't shown much interest in Jedi since the tongue-yanking baby days, other than to hold his toy Woody on Jedi's back and chase him through the house yelling, "Yard Sale!"  But there they are.  Aren't they sweet? 

That furry guy scared the daylights out of me this weekend.  A trip to the doggie ER revealed a displaced hip due to compensating for a torn ACL.  Poor guy.  

After the agony of the drive, the wait, and hearing him whine... he NEVER whines... I stood behind his doctor, who pointed out on x-rays exactly what was going on.  He mentioned surgery, the types of surgery, then he said the words "geriatric patient".  My dog is not old!  

Oh wait... 

This great guy who licked the kids' heads then sat proudly in front of the carrier when then were born... this guy who has listened to me laugh, cry, and all emotions between... who has seen me at my worst and my best... is getting old.  And the worst part is that he's hurting.  

So we wait.  We'll know what to do soon.  The words that hung in the air as they left the vet's lips aren't the diagnosis, or even the "geriatric patient" part.  He said something so profound yet simple that I've heard before, but never thought about it.  

"Do no harm." 

The whole idea, as the doc said, is to do no harm.  Do the best we can, but do no harm.  Don't let ambitious goals and ideas get in the way of empathy and healthy limits.  We want the best for this dog.  Not the worst.  

Yes, we could force him through surgery no matter.  But there might not be a "through" surgery.  It could quickly be the end of his life or make him suffer more.  

We agonize over every decision with Jedi's first little brother, too.  Every therapy, every technique, every everything is scrutinized through books, websites, other people, and our hearts.  No decision is ever really final.  The door is always open to change.  One of the hardest decisions to swallow as right is our decision to go to a self-contained classroom.  

Fight.  So many of the veterans of the autism/special needs battle tell you to get ready to fight.  Question.  Needle.  Nag.  They warn that you'll have to slug your way through this.  And so many people do have to do these things.  But every time I'm tempted to mama-bear over a decision, if I'm given time to think, I almost always either back down and change my mind or at the very least find a polite way to get my thoughts across on Ryan's behalf.  Not to his detriment.  Not to the detriment of the people who care for him.  Truly for his best and not my way... or being hailed as a mom who beat the system.  

Do no harm.  I have to do my best for him, making the best decisions possible with the information and resources I have, and remember that Ryan and his feelings and well-being are number one on that list.  

Ryan is the best resource for what I decide for him.  

That is why you won't see me hailed for fighting when "they" wanted to put him in a self-contained class.  "They" were right.  He is more comfortable.  He is happy.  With the pressure off, he is learning.  Working.  Playing.  And he is enjoying himself.  

His life is good.  

Do no harm.  

This is best.  Some kids don't need a class of four to thrive.  Ryan does.  And no advocacy group will guilt me into thinking otherwise.  It's simple. Shoving him into a classroom in the name of advocacy, awareness, normalcy, or any other reason other than his clear desire to be there would do harm. 

With sensory issues, communication issues, and a host of other frustrations, his life is hard enough.  To him, I will do my best, and by the grace of God, I will do no harm. 

I'll become a student of Ryan, not just therapies. 

I'll take the extra time it takes to really be Ryan's Mom, not to be a hero. 

And I'll not let my decisions be made by what he and she did that worked.  Colored maybe... but not decided. 

I will definitely work on realizing that our best is our best and it's all we have... even where he's concerned.  

I realize none of this will be the kind of post that compels folks to hit share as they reach for the kleenex... there are no amazing stories, no seemingly magical fixes or cures.  Just a mom learning to realize who I need to be for my boy. 

Because it's one thing to do no harm to an animal... completely another when considering the implications of decision making for our son.

Now pardon me while I read this post to myself about every hour as a reminder. 

Thanks be to God for Ryan... and for keeping our Jedi dog around a little longer. 

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