Wednesday, July 31, 2013

Oh, There He Is. WHEW.

So in yesterday's post, we talked about the ultimate fear so many special needs parents have... though I just babble on from the autism perspective this danger is not limited to our little corner of the world of special needs.

Here are a few ideas that were shared with me from others that could help:

Write pertinent information on a card and place it in his pocket.  Thanks to my sister-in-law and Ryan's kindergarten teacher.  Or take it a step further and grab some of these babies from the National Autism Association site. 

Write information on his arm in sharpie, then cover with liquid bandage... pretty cool, right?  I never would have thought of the liquid bandage.  Thanks to T for this cool idea!

If your kiddo will wear a necklace, make an ID necklace.  Thanks to J for sharing this!

There is a great list on the Autism Speaks website... click here for that one.

For Ryan, who will barely tolerate the wrist GPS they give us at Morgan's Wonderland, and who might or might not leave something alone in his pocket, I'm going to start with this.  He's been impressed with temporary tattoos in the past, so maybe we'll start there.

As I mentioned last time, we have a security system on the house that will alert us when a door is opened.  That helps me sleep at night for now.  He hasn't yet figured out the code to turn off the alarm, and we set it so that the house will all but explode if someone opens the door.  But how long will it be before he figures out the code?

Something we haven't done but have to do is get the kid swimming lessons.  The hard part of that is finding someone to teach him here in town... or someone who is willing to work with him. I've seen tutorials online of how to teach him to swim, so maybe it's time to put those to practice.

All these preventative measures help.  They're doing part of what we can to keep him safe.  But the fact remains that a temporary tattoo or a card or bracelet or a sharpie doesn't have the power to take away the fear that one of these times he'll just disappear.

So what's the answer?

The best answer I can come up with is to do what we can, and make careful decisions about where we go and how.  We already have, for years, assigned a person to Ryan.  Even between Eric and I.  We don't just send him from one person to another, even just in a store or at a party, especially outdoors.  One of us looks at the other, MUST make eye contact, and say, "You have Ryan."  And the receiving party has to say "I have Ryan."

So part of the answer is diligence.  But we already do that, and we've about lost our precious boy several times lately.

The only answer is that our fear must spur us on to greater diligence.  Greater problem solving.  And at some point, we have to forgive ourselves.

I still feel terrible about nearly losing him.  EVERY. TIME.  This trip to was not the first time he's wandered.  The first time was when he was two and he made it out of the house and almost to the street.

We have to keep going, we have to keep living.  We have to go to the grocery store.  We have to take walks.  We have to be in a crowd every now and again.  We can't let the fear paralyze us... and the times it does, we can't condemn ourselves.

We have to extend to ourselves the grace and mercy that Christ extends to us... while remembering that sometimes the fear has to be a catalyst to learn more, and sometimes it's just something we have to bear.

Thanks be to God over and over for our kids, and for bringing Ryan back safe every time so far.

Tuesday, July 30, 2013

WHERE'S RYAN?

Late last Wednesday night... okay, early last Thursday morning... we arrived home after the semi-annual trip to the outlet mall for school clothes and shoes.  

One of the most amazing things to me as a mother of three is the amount of time it takes to settle back into a routine, get unpacked, and back to our normal after a trip.  Even a weekend can take a few days to recover, and a few days?  Well, let's just say the suitcase is still laying open in my room with a smattering of clean clothes in desperate need of hanging or putting away.

For the most part, we're back into the swing of Daddy back to work.  And now that the survival mode has waned a bit, the thing that is stuck in my mind is the wandering.

Yes, we had a great trip to San Antonio.  Maybe the best trip behavior-wise EVER... and most of that was due to our realizing that we couldn't make him hold our hands.  WE, the adults, had to do some of the adapting.  With three of us, or even two and a stroller, one was assigned to keeping Ryan on the sidewalk and from running over people, although he did decided to play football with a poor unsuspecting lady in a shoe store.

I am still so embarrassed with that one.  If that kind, wonderfully patient woman ever reads this, thank you.  I wanted the earth to open up and swallow me.

For you football types, you can rest assured that it was a clean hit.  That, and my kid could have a future in football.

But that isn't even the part that keeps me awake at night.  That makes my heart stop when I remember throughout the day.

That would be the wandering.

We almost lost him several times.

By "lost" I mean look down for literally a few seconds, look up, and he's nowhere in sight.

It happened a LOT, but the three times I remember I'll never forget.

The mall was first.  We were at the Disney Store in the Rivercenter Mall, and the mall itself was packed.  Eric picked up a stuffed animal to show me, I told him it was cute, then immediately it was "WHERE'S RYAN?!" 

He was standing outside the door of the store in the hall, looking left and right, probably heading to the elevators he kept wanting to check out.  You know, the ones that lead to the streets of downtown?

The other one was at the Rainforest Cafe on the Riverwalk.  Again, we looked down to say yes or no to a toy for Richie, and looked up and he'd vanished.  Thankfully, we found him in the back of the store, stimming on the elevator.  

This is real.  Wandering and bolting are real.  The fact that Ryan can't tell you his name or who his parents are is real.  He knows a lot of things.  He even knows the phone number of the office where we go at Children's in Dallas to the ophthalmologist.  But ask him what it is?  

Silence.

Same silence with his name, our names, where he lives.  I have no doubt that, if he decided to do so, he could draw every street sign that he'd need to get back home between here and there.  But to share that information on demand?  We're not there yet. 

This is why we insist on someone to accompany him... hold his hand... who KNOWS him, not just his name... if he's going on a school trip anywhere.  And just like they say, he loves water but does not know how to swim.

"In 2012,the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent." ~AAWARE

So what do we do?  What is the answer?  Shut the doors and windows and stay inside?  We already have a security system to make sure if he opens a door we'll know it.  

Tomorrow, we'll look at some options, plans, and other stuff we do as a family to keep Ryan safe.  We'll also take a hard look at where we can improve. 

For now, thanks be to God that Ryan is safe.  That we found him every time before someone or something else took him. 

Thursday, July 25, 2013

Mirror Moments

For our anniversary, Eric surprised me with reservations to a new hotel in downtown Dallas.  If there ever was a place that was a departure from reality, that was it.  As soon as we walked in, the posh, chic decor drew wide-eyed ooh's and aah's from these two tired parents.  Then as we checked in, the desk clerk in her fitted, retro (or is it vintage... I can't keep up) red dress and her bright red lipstick spouted times of when DJ's would be at the pool here and in the "living room" there, when the spa opens, and on and on.  Eric and I stood, smiling and nodding, and walked away half-giggling that we didn't care too much about all that... or should we? 

The contrast was amazing.  Me, in the unofficial uniform of mommy-on-a-date... jeans, rolled up for hot weather and a cute, comfy shirt I've had for years, and Eric in his shorts and golf shirt, walking into the world of the hip and fashion conscious.  She wanted to give us two room keys, missing the cue of my clinging to his arm as I was these few precious hours alone.  

"I'm not going anywhere without you," I said with a smile.  Why would I need a room key?  She looked at us like we had lobsters crawling out our ears.  

We were having a mirror moment with this hipster chick.  

Never do you see yourself, whether good, bad or ugly, in sharper relief than you do when you rub elbows with the outside world.  Whether the people you're around are just a more extreme version of you or are the complete opposite, being around others and seeing how they live and what they do.  

From the very beginning, these moments are what bring to light what we need to see.  If it hadn't been for watching Ryan with other children, I never would have seen the different in Ryan.  Were it not for the moments around other kids that held a mirror to my nose, forcing me to see where he didn't measure up, I wouldn't have sought early intervention.  

I know, I know.  We're not supposed to compare ourselves to others.  While I agree that this can be costly in the way of envy, in a couple of ways that I can see, it's healthy. 

Let's say you go to the bathroom while you wait to go in a job interview.  When you come out of the stall, you see that your fly is down or your skirt is tucked into your underwear.  What do you do?  You take the information that the mirror offered and fix the problem.  If you can't fix the problem, you now at least have the information you need to seek help.  

Over simplified?  Maybe.  But the principle is the same.  We could see, by the mirror of developmental milestone lists, other kids, and other parents that we needed some extra help.  And thank the Lord for those mirrors!  As much as we struggle day to day, I cannot imagine what it would be like if we had refused to believe there was anything we needed help with. 

Now we're to the point where we work day to day with the problem the mirror first showed.  It was obviously a difference, not a fixable issue.  At this point it's what we know.  It's our normal.  

Although it's our normal, our normal is an extreme.  It's tiring.  And there are times when I look at my exhaustion and just start seeing it as incompetence.  My lack of patience.  I don't get enough done.  There's always something else.  The difference is invisible... just my inability to rise to everything and do things tirelessly and with a mega-sunny smile is staring me in the face.  The reality of the challenges hides in the background. 

Then we go around others, and I see that it really is different.  For just a moment, I can look at our reality for what it is, what we really do as parents, what our kids face on a daily basis, and lower the shield for a minute.  For a moment, show the cracks in the armor and the exhaustion.  Admit that it's hard.  Cry on a friend's shoulder and absorb the blessing of encouragement.  

Really look in the mirror.  Look at how tired we are, yet how God blesses our family.  How much we've learned, how far we've come.  How different our lives were then, in the innocence of the before-autism time, and how much more intensely we love our life than we used to.  How the depths of frustrated exhaustion lead us to intense joy over something as simple as an elevator ride.  

Then, as we take up our shield and sword and begin the battle again, the burden is a little lighter, for it has been shared.  

Thanks be to God for the ladies who helped hold my burdens this week.  You were truly wonderful as usual, and I am so thankful for you!  

And of course, thanks be to God for the mirror moments.  



Wednesday, July 24, 2013

A Few of Our Favorite Things

What do you like to do in San Antonio? 

We hear this a lot from people we meet.  So many folks like to hit Sea World, the Alamo, Fiesta Texas, and so many other fun things there are to do.  This is an amazing city, especially in its downtown area.  

Honestly, I've often questioned our making these trips with Eric.  Is it silly?  Is it worth it?  We are blessed to have a district that sends Eric here, and we're so thankful.  But we don't go around and do the family things TBA offers, because of our challenges.  It would just be too hard.  

So what do you do?  You settle into who you are.  

Coming to conventions with Eric... the same ones I attended as a professional... have played a major role in teaching me who we are, and that embracing who God made us to be is where true joy and contentedness lie. 

So today, our day to travel home, we will share with you our favorite things.  These are the most precious things to our family down here.  They are our vacation; the thing these kids will look forward to and Ryan will ask about until the next convention (which is February 12... thanks, Melanie for checking the date for me).  

We'll start with the star of the show... the elevators at the Hyatt Regency.  

We watch the ones that go to guest rooms...




We look out at the water, and to his beloved "Blue Elevator"...




And just generally run around and enjoy the amazingness of this design.


Then there's the Disney Store, where we go just once.  Each kid gets a toy, and they look forward to this like it's Christmas.

There's also the little Irish pub we love.  Richie spouted over and over last night as we left, "I love this place even more than Sonic!"  And if you know how much this boy loves a Sonic grilled cheese, you know this is huge.

This year, we went late enough that they had a man from Ireland who played guitar and sang.  I was a little worried at first, but Ryan loved it!


My favorite part was, during a song he knew, Ryan shouted, "Bust my buffers!' cried Mavis!"  Yeah, Thomas goes where we go. 

And there's swimming.  The hotel pool is so much of our fun at TBA.  

Cheesin' for the camera on the hotel elevator, which is just about the only place to get a group shot... 


 Then there's JUMPING!!!!  We love jumping in the pool!  Guess you could say this is our Sea World!




Oh, and the coveted bubble pool... 


It has been an amazing trip.  We've had panic moments, meltdown moments, and delightful, amazing moments crammed full of happy.  And we've had plenty of what I like to call mirror moments.

Thanks be to God for the rollercoaster that is life, and for the opportunity to enjoy this great city.

Stay tuned for more on mirror moments tomorrow. 

Sunday, July 21, 2013

The Concert and the Hug

This is how today started...



All the kids piled on Eric while he let mother and I sleep a bit more.  It's a bit blurry, but I love it.

Then the big thing of the whole trip.  The stretching of our boundaries as a family, as people, and certainly the family of an autistic little guy.   I've planned it for at least a month.  As soon as the TBA Spouses' Division sent out their itinerary, I took a shot of it and sent it to Eric.

I want us to take the kids to this. This would be a great first concert for them. 

It was a Boston Crusaders concert/clinic.  I know, what a place for kids, right?  But the way I see it, who's gonna hear Ryan screaming over those drum corps kids blasting our faces off?  

Okay, so I thought it was just a concert.  Whoops.  


A badge like mommy's and daddy's?  Cool!  


Eric told Ryan all about what was going to happen.  Well, all that he knew would happen.  I'm the goofy mama who thought drum corps... you know, bugles and drums... and promised a very nervous Ryan that there would be no singing. 

Whoops again.  

They sang a warmup or two, but it was beautiful and very well done, so no screaming.  The other thing he was afraid of was the house lights.  

"You will not turn off the lights!!!"

And I took a gamble and told him they wouldn't... and they didn't.  Whew.  We talked about how it would be loud, and it was just like church.  He had to use a whisper voice.  LOVING that new skill! 

As the corps director began to talk about the show, I almost fell over.  Their theme for the show this summer is "Rise." 

All about rising from adversity.  

Finding hope.  

And that's when I wished I hadn't bothered with eye makeup.  

I also wished I could stand up and start talking.  I wished I could tell that man how much this show... this performance... means to us.  To our family.  

DCI in the Alamodome used to be my favorite part of TBA.  Due to limitations as a family, the last one we attended was when Ryan was about two.  You know, right when we were starting to get nervous about his development?  

As I sit in the hotel room, I look out and can see mostly the same sights I saw as a wide-eyed freshman in college.  This place was such a dream for me in so many ways.  Maybe someday I'd have honor band.  Maybe I'd make it in to Phi Beta Mu.  Oh, the sky was the limit!  It was so thrilling to think of what lay ahead.  And when I had a job, it was such fun to dive in and learn.  

None of those dreams had a contingency plan for a neurodiverse child.  In all of those plans, in fact, I was the working mom.  Or the mom who took her kids to concerts and clinics while their daddy was off doing his band director stuff, too.  

I never dreamed my child wouldn't be able to handle the crowds just walking from the hotel.  

I never dreamed my child would melt down over having to turn and go a different way in the path due to construction.  

I never dreamed that I'd be sitting here, pouring my heart out to you.  

I dreamed of pouring my life out for my children and my husband, yes.  But what I didn't realize is that I dreamed those things on my terms.  What were those, you ask?  Well, for one, I'd always love it.  I'd be so wrapped up in mommy and wifedom that I wouldn't have a second thought for what I was missing in the band world.  I would be selfless, then.  And therefore, all this would be so easy.  

As we all know or are finding out, life has a way of doing what God intended.  And God's imagination is so much more than ours.  

This concert, the struggle to just be there, were just overwhelming.  This was our first concert in years at convention.  And the theme.  Rise.  Hope amid adversity.  Hope from hopelessness.  

Toward the end of the concert, during the run-through of the Boston Crusaders' show music, the wheels began to fly off.  Just at a quiet-ish moment, he started to stand up.  I asked him to sit.  He didn't agree, and the hitting and grunting began.  

It thankfully ended quickly.  But only when he leaned over and snuggled into my arms.   With both arms around him, a blisteringly loud, gorgeous wall of hope inspired my heart.  I held him, whispering that it's okay and it'll all be over soon and I'm so very proud of you, baby over and over and over.  

Call me crazy, but there are times when it seems God hugs our hearts.  Today, with something so dear to my heart that I've all but left behind all around me, I felt as if, as our pastor says, God just picked me up and gave me a big bear hug.  Maybe the same one I was giving my Ryan.  

As soon as the drum major cut off, I turned to Ryan and exploded with "YOU DID IT!"  

The crowd was on its feet and making its own noise, well-deserved for these fine musicians.  

He smiled ear to ear.  He knew he'd really done something.  He was proud.  

On the way back to the hotel, we were immediately back in meltdown land.  We fussed over lunch, played iPad, napped, and swam.  He melted down at the pool and we had to come back.  Seems he didn't much appreciate being made to sit out for pushing his brother in the pool.  

Then Daddy came back and we went to dinner.  Here are my dear boys waiting for our turn, watching the pigeons and boats on the river. 


And Ryan decided he needed to take some pictures, too.   He took this one first...


When the kid looks at you and says, "Say cheese, Mommy!" you say cheese.  You just do.  

Then he was on to the self-portrait end of things.  Nice nose, little dude.  


And then we took a walk to the blue elevator, then back to the hotel for some hanging out, snuggles, and baths.  

Thanks be to God for the hug I needed and I won't soon forget. 


Saturday, July 20, 2013

The Wonderland

It's that time again!


We take a trip to Morgan's Wonderland every summer, the day before Eric's convention starts.  IT's always a great time.  For the kids, it's the running around and playing without the hindrance of mom and dad freaking out.  For us, it's... well, okay... the same as the kids.  We love the fact that they offer tracking bracelets to the entire family so that if anyone wanders, we can find them at any one of several kiosks in the park.  Great security for a family with a wanderer/bolter.  So we can walk into the park and not just let go... but we don't feel quite so panicked if we can't see one of them right away.  


And they're off!

I could go on and on about the greatness of this place for special needs kids and their families.  They even have swings for entire wheelchairs for crying in a bucket!  It's wonderful!  It's true that they make it so that everyone can play. 


It was super hot... look at those thirsty babies!


Eric even got to fish with his kids for the first time!  Ryan liked dropping the line in the water, and that's pretty much it.  Once that bobber hit the water, he was done.  


There was the mallet instrument section, which Ryan always enjoys.  But the water part... oh, the water part.  This is always a huge hit with the kids.  


You can see that Richie's loving the huge thing that looks like a screw to me, that winds water up through to the top by spinning this big wheel... yeah, rockin' those technical terms tonight.  Trust me, it's cool.  


Ryan loves it, yes.  But right here, he's doing nothing more than stimming on the train.  He could see it just about everywhere in the park, and as soon as he heard that whistle, he was off!

Speaking of trains... here's my girl and I on the train.  Super fun!  


Then there's the carousel.  Or the "carouself" if you're Ryan.  


Yes, even Daddy had to ride!  Ryan is on the big dragon.  


As we got off the carousel after going around about five times in a row, Ryan lost a shoe.  He hollered rather matter-of-factly, "Oh no!  I've lost my glass Croc!" 

I about fell over laughing!  That's exactly what Maelynn's princess castle says when you put Cinderella on the little button-pedistal-thingy (again with the technical jargon). 

After the chaotic fun that is checking into the hotel, we had a nice swim and ordered our traditional hotel fare... pizza!!!  

Ryan finished before anyone, and immediately went to the window to "Look out at the city, Mommy!" Soon Richie and Maelynn joined him in watching the carriages lined with lights (and some even shaped like pumpkin coaches).  Soon we began hearing about how they were watching a flying circus, and how Cinderella, Ariel, and Rapunzel were down there.  When I asked where they were?  

"Out there, Mama!  Out there in Oklahoma!"  


It's been a fabulous first day of our TBA trip, and there was a great lesson learned in a rough moment at the park... not even with Ryan... that I'm dying to share.  But if there's one thing I'm learning right now, it's to slow down and realize that relaxation and enjoying... truly drinking in and tasting a moment... are not things to feel guilty for taking time to do.  

So good night from our first night in San Antonio, the city that band taught me to love... on our first day of the Texas Bandmasters' Association convention.  

Thanks be to God for such a wonderful day, and the opportunities that lay ahead in the morning! 

Friday, July 19, 2013

The Haircut Phobia Overcome!

So this happened...


But let me back up a bit. 

Ryan HATES haircuts. Always has. I would wait and wait, then it was a horrible crying, hitting, shaking evening of finally getting all sheared. 

He has super thick hair, where his little brother has fine, wispy, curly golden locks. Ryan, especially this time of year, needs a haircut. 

In the beginning, having tried both clippers and shears, I decided to go with the clippers for Ryan. At least that way, in his floundering about, he couldn't get as hurt as easily. So that's just the way I did it. I had tried asking in a way he might be able to answer, but he didn't seem to have a preference other than NO HAIRCUT!  And they stayed violent, frustrating, terrifying experiences for him.  

Until about six months ago, that is. 

Ryan finally, after the usual "NO HAIRCUT!", said "NO CLIPPERS!" 

Well okay then!  I used scissors, and his haircuts have been progressively better.  We sit in the kitchen floor (I know, but it works for us), I put a towel around his shoulders, and start at the back.  I work my way to the sides, leaving the top and then the front for last.  The front bothers him the very most, I think because the hair gets in his eyes and face most.  

Tonight, before we head to Eric's convention "The Hotel!" in the morning, I cut all the guys' hair.  As Ryan's neared the end, I was silently thanking the Lord for the progress my little man has made.  He was sitting still, though hunkered down and trying to snuggle me... and no yelling.  No anything.  Just the usual, plus the now calmly stated "no clippers" rule.  

I was thinking, as I snipped away, about the ease with which he sat there and let me work.  I thought about the horrible times that ended with both of us in tears, me agonizing over my impatience and shortcomings as a mother and a person.  This was completely different, and I was so thankful.  

Still, Ryan hates the hair all over his shirt, arms, and face, so he goes straight to the shower with Daddy's help.  As soon as all the cuts and showers were through, it was Daddy's turn.  

Daddy likes the clippers, because they get his hair very short and more even than mommy can with the shears.  So I got to work, buzzing away.  And here comes Ryan.  

"Daddy gets the clippers" he says.  

"Yes, Daddy likes the clippers, sweetie.  Hey... would you like to help?" 

I've tried this before, y'all.  He has always run screaming.  Really.  I've tried the "help me give daddy a haircut" approach so many times, always completely freaking him out.  The thought of touching the evil clippers was too much for him to take.  

This time?  

"You will help!"  


And he did.  He helped.  Okay, so he poked at his VERY PATIENT Daddy's head, saying, "You will poke away the hair!"  

In our world, this is a miracle.  It's huge.  

He didn't just stay in the room when I asked if he wanted to help... he TOOK THE CLIPPERS and cut some of his Daddy's hair!  And he didn't want to stop!!!  

Thanks be to God for these things that are so miraculous to us! 



Wednesday, July 17, 2013

Grocery Trip Blessing

Drum camp began Monday, 8 to 5 every day.  Saturday we'll go to Daddy's convention, then next Friday starts summer band, which goes until school starts, with maybe a day or two of exception.  So the indulgent time of having Daddy home is over.  Contrary to what you may have heard, teachers do not spend the whole summer playing around doing nothing, and they certainly do not get the "whole summer off".  But I digress.

With Eric being out all day and everyone home, we have to find a way to get our groceries.  I know, not a big deal.  Everyone takes their kids to the store, right?  There's generally no begging for toys.  Thankfully, our boundaries for what we buy are so far well-repected with the kids.  We walk through and look at toys, but we don't buy.  Then we go get what we need and go.  There's little fussing over wanting to leave, some about whether or not they should get to walk or ride.  Mostly our challenges revolve around keeping Ryan going, and after a while, keeping Richie and Maelynn from torturing each other to death.

Maybe I shouldn't admit that... but yeah, my neurotypical siblings fight like, well, brother and sister.  There ya go.  

I have to say, I'm so proud of Ryan.

Usually when I say that, I'm proud because he managed to sorta-kinda conform to what society would deem "normal".  That or he sat in the cart, playing iPod with headphones to keep him in his own little world.  Basically, I'd usually say that because he stayed pretty quiet and didn't cost me much effort.  Wow, that sounds selfish.

Especially in contrast to how our trip to the local corporate conglomerate super store went yesterday.

Every now and again, I feel compelled to just do it.  Just try something because if I don't try, it'll never happen.  We have to stretch his boundaries.  We have to try.

So we loaded the van unarmed.  Yes, I had seatbelts.  Yes, I did have my list.  Yes, I did have my Mom.  No, I did not have the iPod and headphones.

Usually, I don't let the kids ride in those ginormous, tractor-trailer carts with special kid seats.  For some reason, those things bring out the angry-cat-stuffed-in-a-pillowcase in my littles.  This time?  Why not.  We're living dangerously today.

It was definitely not a relaxing trip.  Knowing that I can become distracted and he'll be gone in an instant is hard.  He does not stand still.  He's not really a high-bounce-ball in a concrete box type of kid... more of a freight train.  Once he's going, he needs to keep going.  Once he's stopped, it'll take a while to get started.  And he'll derail if you push too hard.

I tried letting him choose some products for me, but that wasn't going as well as I'd hoped.  He did love reading loudly the numbers on the aisle markers.

Do you see a five, Mom?  Do you see a number five?  I see a number five, Mom!

We walked through toys, and the only time he got hung up was on a baby's driving toy.  Many lights, many sounds, and a steering wheel.  How could you resist, right?

He skipped happy-stimmy through the store with many "stay with Mommy" reminders, calling out aisle numbers and reading this and that.  Then it happened.  

In the dairy aisle, where I start at the back getting the actual food part of our grocery trip, he stimmed over to a mom and said, "Hello there!" 

I mean, he was really in her personal space.

She smiled and said hello.  Clearly amused by his transparency, she smiled at me too.

There was a bottleneck around the spot where the eggs meet the biscuits and such, so we stopped.  As I went to choose a loaf of French bread off the day old rack to make French toast, he kinda sat in a thankfully empty spot where the eggs go and began saying hello to another lady.  She also smiled and talked to him, and commented to me on how much he was enjoying himself.

I began to stand a little straighter.  My shoulders came down from my ears.

Over and over, he ran nearly into people, talking to them about the trip coming this weekend.

You will go to the hotel and San Antonio and go to level R!

Even the stocker bent over working on the lunchmeat.  Ryan bent with him, found his face, and spouted his greeting.  

Every person at least smiled at both of us.  How could you not smile back at this face? 


I was proud of Ryan for the reason I'm supposed to be proud of Ryan.  He wasn't easy to keep with me, he wasn't easy to keep up with.  There were a few times I had to leave my poor mother standing there looking at something so that I could stay with the train.  

He wasn't easy.  He was amazing.  Inspiring.  Wonderful.  

He was as God made him.  Unapologetically, he was himself.  And you know what?  I think he might have blessed a few people.  I know he blessed his Mama.  

Thanks be to God for Ryan's sweetness... and for those who saw it yesterday. 


Monday, July 15, 2013

Who hears?

"Will Ryan have autism tomorrow?" 

Richie asked this recently when Ryan was having a rough day.  I had no idea what to say.  I'm actually surprised he hasn't repeated the question.  Today would be a good time to ask. 

Every suggestion is met with blood-curdling, horror-movie screams.  

This is one of those days that makes me want to call up every last person who ever suggested that we just spoil him, and if they'd have him for a few days he'd be fine.  It makes me want to let them hear the screaming, see the way I've not given him what he wanted, and that he screams anyway.  

This morning, Ryan got first pick of what to watch.  We sat together and all watched his thing, then it was Richie's turn.  Ryan screamed with the movie several times, which is normal for him.  Not exactly calm and easy to deal with, but normal.  I leave what I'm doing to walk across the house and remind him, "No screaming with the movie or TV goes off."  He'd stop for a while each time. 

At the end, he did not approve of Maelynn's choice of TV, even though it is one of his favorite things.   Much screaming, much hitting.  We watched it anyway.  

Richie, during the show, came to the table and said, "Brother is screaming."  

"I know, sweetie.  I can't stop him, I don't know how to help.  I tried.  I'm so sorry.  But if you want to go try to help, that's fine."  

He did.  He charged back on a mission to help his hero.  His wave of love and caring crashed on the rocks of a melty day.  The screaming exploded when he walked in the room. 

Defeated and sad, he came back for a hug.  

Mother and I both loved on him, affirming him as a big brother and such a caring helper.  As he rebounded, he asked for a coloring sheet.  Maelynn thought that was a great idea too, so I printed two.  Thinking I'd go back to the laundry, I got their supplies and turned to go to the washer.  

"Mommy, will you color with us?" 

Once the laundry was running again and the requested color sheet printed, I sat in the floor amidst all the things I need to be doing and did what needed doing the most.  We colored. 

As we chatted about this color to use here and that color to use there and how markers are better than crayons, he came screaming from his room.  

"MOMMMMMMMYYYYYYYYYYYY!!!!!!!!!!!"  

The conversation about colors and all the sweetness of preschool speak continues with a background... no, alongside... the extreme anger, frustration, and just plain intensity that is Ryan's day today. 

"BWWWAAAAAAHHHHH!!!!  AAAAAAAAAAAACCCCKKK!!!!!!

Occasionally, I get up and calmly as I can remind him to come speak to me in words.  I try to ignore the screaming.  I try not to reward the screaming.  

But I just. want. to. cry.  

I invite him to color with us.  

More screaming.  

I'm sure I've made mistakes in handling these things.  I'm sure there are better ways, better approaches.  But I don't know what to do other than be calm.  Remind him how to communicate.  

In words.  Speaking, no screaming.  

About ten minutes ago, he was able to calm.  He's sitting in front of me, writing and drawing on his marker board.  Number after number, he writes... no, draws... the letters.  Then he holds the pen in front of his eye, shaking it up and down, and flapping his hands a bit.  Then erase.  Then another number.  

I have no idea what this morning has been about.  I can make hypotheses, drawing from the things I know to be true about him and clinical things taught by study of his diagnosis.  

But none of those things fix it.  

I see so often, and repost often, cute little quips decorated with colorful puzzle pieces that state things about autism, and I generally agree with what I post.  But autism isn't all cute puzzle pieces.  It really isn't cute at all.  

RYAN is cute.  He's adorable.  These behaviors and navigating life with them?  Not cute.  

Watching him struggle?  Not adorable. 

Seeing him pummel himself with his own fists?  Not colorful. 

His chest after a day like today?  Colorful, but definitely not cute. 

Balancing the sound of happy childhood tunes and BLASTING SCREAMO?  Not cute. 

When we go out of the house, we look cute most of the time.  I mean, the kids... they're so easy on the eyes.  And often, we look happy, mostly because we are a joyful type.  But on these days, behind the closed doors, I often wonder who sees?  Who knows how hard this really is?  Am I just whining, should I just suck it up, cupcake?  Can I? 

Not really.  And the days, they multiply... but this time in the trenches, as my to-do list waits, pristine and almost unused... am I accomplishing anything?  Am I doing the right thing?  Is it really this hard? Does anyone see our tears or feel our pain?  We keep going, we hold to the things we know to be right, and so often it just doesn't seem to work.  Sometimes it's just like the movie Groundhog Day... over and over and over and over again, the same frustrating things. 

The only thing that helps me get a breath today?  

You have kept count of my tossings; put my tears in your bottle. Are they not in your book? Psalm 56:8

That's all I have on days like today.  

And that's a lot. 

Thanks be to God.  

Friday, July 12, 2013

Special Kind of Love

I get a lot of questions via Facebook and email about our family, autism, etc.  One of the top questions has consistently been about a family or friend who has a child with autism.  So many of you WONDERFUL people want to know how to approach this, how to be a good friend or family member to this family.

Over the last couple of days, I've watched the answer.

I told you last time that my beyond precious great-aunts were in town.  They drove hours and hours at 70 plus year of age to see my family and my mother.  They've spent time with us before, but shorter amounts and in different scenarios.

And they still weren't afraid to spend time with us, in our house, for about three days.

We didn't try to go anywhere, but stayed at home where we could visit and the kids could play and we could all interact with them, too.  We didn't do anything terribly special.  To tell the truth, most of the time we were talking around the kitchen table or the dining room table.  We ate together, then went back to laughing and chatting and watching the kids.

It was bliss.  They gave me the biggest, most meaningful, heart-touching gift that anyone could have mustered.  They gave their time, their love, and themselves to be family.

There's more.

They rode through the meltdowns over this and that.

They offered encouragement.

They asked questions when appropriate about how to best interact with Ryan.

They loved on ALL the kids, letting them be themselves, without judgement.

They held back any unsolicited advice, trusting that we know the situation better than they do.

They rejoiced when Ryan kissed them goodnight without being asked.  They recognized that for how huge it is.

These ladies simply took the time to make sure they were to my kids the same they were to me.

Loving, accepting, caring... interested.  I'd almost say determined to love us for who we are... each of us... regardless of how different, loud, or just flat off-putting certain behaviors can be.  I know they were a bit out of their elements to say the least in dealing with the behaviors that come with our brand of autism, but they didn't complain.  They didn't say anything sidelong or ugly, and I can guarantee they wouldn't dream of it.

So how do you love a family who is living with autism?  The answer is so simple.  It's so obvious that it might surprise you.  Don't feel bad if you didn't think of it, because sometimes the things we hold so close are the hardest to see.

You love a family with autism just like you would anyone else. 

You listen.  Understand.  Trust.  Encourage.  If you don't understand, listen more.  If you want to love anyone, you must first learn them.  Hang out with them.  Listen to them.  Hold the unsolicited advice.  Halt the need to just try to take over and fix it... whatever it is.  

Did I mention listen?  

I wish I could say that this is automatically how everyone will act in return.  But while I can't guarantee that EVERY family with special needs as part of its life will be a great friend in return, I can say that so many will be so happy to be treated like people.  Not like projects.  

We are blessed with amazing families and friends who stick around to find out that the same family who deals with the little boy who hits his head and screams is actually pretty fun, just limited in how much we feel like we can get out of the house.  

Again, a huge thanks to these ladies for making the trek to G-town.  They made it possible for me to do one of my very favorite things since I was a little girl and the thing I dreamed of doing all at the same time.

I got to hang out with them, looking at old pictures and old stuff and talking about this and that, giggling and chatting about old times over yummy things around the same old table... all in my house with my family.  So sweet.



And judging by the wailing when they left, my kids love them just like I do.

Thanks be to God for the ones whose love transcends the comfort zone.  

Tuesday, July 9, 2013

The Visit

We are having special visitors this week.  I'm quite excited!  We've planned this for a while, and now they're here.  Okay, they wore themselves out from travel yesterday... but they're in town and they'll be here soon.

These two are Nanny's sisters.  My dear, beloved Nanny's baby sisters.  And I've always loved them to pieces, even as a little girl.


On the left is Nanny, the girl looking down is Dixie, and the one with short hair to the right of Dixie is Gladys Mae.  And that's my Mama sitting in Gladys Mae's lap.  

They were so close.  Nanny was nine years older than Gladys Mae, I think... which makes her ten or eleven years Dixie's senior.  She and Grandad would often take them for a while in the summer, and they'd go pretty much wherever the family went.  One of them even got to carry my Mom out of the hospital when she was born! 

These ladies were part of the happiest parts of my childhood.  I looked forward to time with them like other kids looked forward to amusement parks.  Call me weird, that's how it was.  They were and are silly, fun, and kind.  And they were Granny's girls.  

They always made me feel heard and relevant.  I never said anything stupid.  Maybe funny, maybe something that needed clarification, but not stupid.  My likes, wants, and dreams were valid to them.  And I just thought they were super cool. 

And now, the sweet ladies that made me feel so worth-it, so special, are here.  They're smiling at my kids, laughing with us, and helping hand down the family tradition of spending most of the day and sharing our lives around the kitchen table. 

My great-aunts drove from as far as western Oklahoma to be here with their niece, great-neice, and great-great-niece and great-great-nephews for a couple of days.  

Neither of them are the least bit jaded by the different-ness, either.  They have no background in education, special education, or autism itself, and yet they love us enough to just jump in and hang out here for a few days.  To do what we do just to be with us... and I do hope they know they're blessing us.  

As we were getting out of baths last night, Ryan came out in his oversized, dear purple sleep shirt and mismatched red shorts.  I wasn't in the kitchen, I was still in the bathroom helping the littles.  Throughout the day, I tried to prepare him.  I would take one of his marker boards and write messages like "Gladys Mae and Dixie are coming" and "Gladys Mae and Dixie love Ryan, Richie, and Mae-mae" hoping it would help a little.  He read them... I know, because he did so aloud.  

It helped.  Or maybe he just knew.  Because right as he came in the kitchen, the hugged and kissed both of my dear great-aunts, who he hardly ever sees, and told them good night.  

Call it routine to tell everyone good night.  Call it a family thing.  Call it what you want.  But I call it a precious, sweet, silent understanding that God has used these ladies throughout his mama's life in big ways, as well as a knowledge that they love and accept him for who God made him, too.

The longer I live, the more grateful I am for this dear family.

Thanks be to God for this amazing couple of days with these amazing ladies! 



Monday, July 8, 2013

The Wonderful, Imperfect Holiday

Last week's holiday, just like every other holiday, can be more frantic and terrifying for the one kid and frustrating and disappointing for us than anything.  Loud noises don't bother Ryan as they do so many other kids on the spectrum.  Honestly, candles scare him more than fireworks.

I know.  I haven't figured that one out either.

Rational or not, that's the way it is.  Changes in routine cause the nasty ripple effect of meltdowns, and that's just the beginning.  We almost never participate in community events.  There are too many things that he's used to that become variables.  If you think about it, you know what I mean.  The park was a big one.  So many community things happen at the city park.  Our city park is on the outskirts of town, and the playground is surrounded by a little bit of woods. Just beyond the trees, so close you can hear the cars whiz past, is the highway.  There's not a fence that I know of.

Add crowds and a kid who doesn't possess the skill of telling a stranger his name... you know, someone who might be looking for him... and the love of stimming on cars going by, along with no sense of danger, and there you have my fear of taking my child into these situations.

As a kid, in both my mother and father's houses, this was a big day.  There were a few times I was able to be with my mother's family, mostly in high school.  But just about every other Independence Day I celebrated in southeast Kansas with my Daddy and stepmother.  He was disabled with COPD from a chemical burn on his lungs, and she worked in her beauty shop they built on the house.

This was, hands-down, my favorite day with them.  Through every year, even when he was binge-drinking, taking valium, and doing other things that weren't quite so legal, the Fourth was a day we all could manage to be happy.

Daddy and I would go to a fireworks stand in the afternoon sometime before my stepmother quit for the day.  That one day of the year, I got to be daddy's little girl, getting what I felt like was anything I wanted.  Looking back, I know he only could spend about $20, but the amount doesn't matter.  We did this together... really together.  Once we were home, I'd sit down and sort through them all... those crazy hens that laid eggs, the tanks, the cones, the roman candles... and arrange our little show.  Once that was over, we'd get in the truck and watch the show at the local community college.

Of just about everything I would NEVER bring to my family of my relationship with my father, this was definitely an exception.

It's another case of "I always thought I'd do the same with my kids".  This time, however, the burn ban we always seem to be under keeps me from doing what we used to do.  They say it's okay, and fireworks stands still sprout and bloom like wildflowers, dying off on the fifth.  But I can see the brown, dry grass, and um... no.  The local fireworks show frightened me, too.  After bedtime?  No boundaries?  We'd surely lose him or he'd lose it.

Ryan's enjoyed family fireworks in the past, but they were shot in southeast Oklahoma at Nanny's.  Not in central Texas, where we can't seem to decide if we're in a desert climate.  And the fiery stuff was far away from the kids most of the time.  Not so much here.

This year, just like I did last year with football games (you can read about that here), there had to be some changes made.  We were missing everything.  Some things really are too hard and confusing for Ryan, which means they're not fun for him.  But it was time to try.

We sat around the table and talked through our battle plan itinerary.  We picked the things in the park we thought would be fun and do-able, and the parade.  We had to go to the parade.  There wouldn't be a band, obviously our favorite part of any parade as a band family, but there would be lots of other cool stuff.  After the parade, we'd make a family trip to the little sweets shop in town.

The whole time we talked, I wanted to say that it would be too hard.  Thankfully, the part of me that wants to savor all the wonderful things about the life God has given us won.

It was interesting at times.  And there was hitting and screaming at times.  The trip to the park was the worst... or it was the most challenging.  I'm still not sure what to think about the man who asked Eric what was wrong with a hitting, screaming Ryan.  "He has autism and is having a meltdown" didn't seem funny to me, but apparently that man thought it was hilarious. Ah well, I guess we gave him a good laugh at the least.

So the park was tough, and waiting between events was tough.

But the great parts were so much more than worth it.

These kids were awesome.  They were great at the parade, and got more candy than if they were trick-or-treating.  A little girl riding a float even recognized Ryan, and hollered and waved at him!


While daddy grilled burgers, they swam and played.  Once they'd had their fill of holiday fare, we dried, dressed and piled in the van to watch fireworks.  

Watching those fireworks was one of the sweetest family times we've ever shared.  It was a long wait to start, but we had glow sticks and random people selling things to fill the time. 

Then, the most magical of it all.  The oohs, aahs, and wows.  Ryan spouted "Look at her!" in his excitement, but he really meant, "Look at that!"  

He said they were beautiful.  

Richie and Maelynn both said this was the best day ever.  

And they were right.  

Thanks be to God for our country... and for such a wonderful, imperfect day.  





Wednesday, July 3, 2013

The Last Day

There were all these great ideas, but busy-ness took its toll on time and imagination, and I sat in front of Ryan with my hair all wet.  Thing is, I didn't do even this well last year, so I guess that's an improvement, eh?

I put the blank card in front of him, telling him what to write.  Actually, I had written down what I wanted him to say.  His handwriting is pretty great, but his spacing of words leaves something to be desired.  But what do you say to these people?

What do you say to someone who has helped your child?

What do you say to someone who has endured the screaming, self-injurious behavior, and the flat refusal to do anything at times?

What do you say to someone who fell in love with your child despite all that?

What do you say to these people who come in our lives, sometimes still a little nervous about all this, then exit in our last meeting, confident and seemingly ready to go on to the professional world?

Ryan has had three ABA student therapists, and we've been crazy about all of them.  Each of them brought something great into our home through our son.  Each of them listened to me at my most awkward in the first meeting.  You know, the one where you're trying to tell them what this kid needs to work on.  I always find myself grasping for a coherent sentence while really just wanting to cry and say "why don't you just come home with me for a week" because that is really the only way to know us.

By the end, we can talk about the things that are hard, I can ask if I'm crazy about this or that, and my favorite thing... telling them what we're doing in a certain area and asking that fun question.  "By doing this, are we screwing him up?"

Yeah, sometimes I just can't sound intelligent.  The desperation to do the right thing overshadows my need to sound smart.  I just want to do what's best, and like I've said before,

Finding the right thing to do for these kids is like crossing a six-lane highway at rush hour, blindfolded, trying to find a nickel on the way.  

Or maybe it's just us... 

Nyaaah, probably not.

Anyway, we sure hate to see these ladies (and maybe young men someday) go.  But I hope they all know how much we appreciate them, that they're prayed for, and that we're so impressed with them.

So we leave them, with a smile and gratitude and the offer of answering whatever questions they have out there.  But they'll all always be in our hearts.  And they are prayed for.

It's different, saying goodbye to our little guy.  He kinda keeps looking around the room, doing his thing.  I asked him to give Miss C a hug, and he leaned in and let her hug him.  He waved and awkwardly, almost expressionlessly said bye-bye, and we thanked her about fifteen more times, and we were off to the little elevator.

Godspeed, Miss C.  We thank God for you, Miss C, and all the others from the BARC to ECI to the school district who have worked to give us another piece to the puzzle... and sometimes, another friend.

Thanks be to God for the ones who give their lives to help others in ways not everyone considers.

Monday, July 1, 2013

Melty Reality

SO many books I want to read.  SO many things to work on that require a little thought, maybe some quiet.  Did I mention there are a ton of books I want so badly to read?

For mother's day, I got to go see The Great Gatsby on opening night with my Mom and that kid I wish was mine, J.  I was so crazy about the story that I wanted to re-read it, so I bought it.

Yeah, it's still on the shelf.

I'm discovering why there are so many pristine books on my shelf.  So many wonderful pages gathering dust. So many sewing projects left cut out but not sewn, or still just ideas pinned in an online pin board.

Folks, I can't think.

There is a project that is crucial that I need to bang out for church.  I've set deadlines for myself other than the deadlines I face there.  This is not that big in the grand scheme, but it's important to me and families like ours.  And I can't think.

I told Eric I needed time.  He gave it as best he can.  But through headphones, earplugs, and a shut door I can hear it.

Anxiety.

Upset.

The scream that says, "HE IS IN MY FACE AND I CAN'T HANDLE IT AND I DON'T KNOW WHAT TO DO SO I WILL SCREAM."  

I WILL RUN AND HIT MY EARS AND I WILL SCREAM. 

I WILL HIT THE WALLS WITH MY BALLED, ALREADY ROUND LITTLE BOY FISTS AND I WILL GRUNT, YELL, AND CRY. 

Why?  Why does he do this?  We do not give him what he wants.  This behavior has not been met with progress.  It has not been rewarded.  Not here, not at school.  

Why?  No... his Grampy taught me to ask "to what end".

So if he's never received praise or positive reinforcement for this behavior, to what end does he continue?

GET UP NO! GET UP NO! GET UP NO!

He screams and stomps and kicks and I have to get up and check.

No.

I have to let Eric deal with it.  He can do it.  No really... if there's a dad that can handle it, it's him.  But my mother-instinct won't stop.

Eventually instinct won and I kicked my legs over the side of the bed and headed to the living room to check.  As soon as he saw me he stopped.  He smiled.

Okay, so maybe I've reinforced the behavior without realizing it.

It was me, being here in the house, but not present that bothered him.  I seldom retreat to my bedroom to work.  Usually, what I get done is done in the living room or the kitchen with them laying around me, watching movies, or playing in the floor.  Or they're asleep.

Oh, for the ability to tell me that he just misses me.  Or that he thinks this is weird.  Or to ask me why I'm doing it.  Or to tell me he can't handle it, it's just too strange to not have me banging around the kitchen.

I so often feel bad for not getting enough done in a good enough time frame.  So many musts.  So many shouldn'ts.  So many don'ts. So very many DO IT RIGHT NOW's. Try as I might, I can't convince myself that all housework and bettering myself at all should be left on the back burner, that I shouldn't be concerned with what I do and don't do.  Even my own health is left to "when I can" which turns into never.

But I will try again.  I will be glad with what I have finished and okay with what I haven't.  I won't beat myself up for having reinforced that dreaded behavior without realizing it.  I won't pick on myself, either, for having made him leave the room because he was laying beside me, yelling out at random.

Once I answered a few questions, we were good for me to go back to work.

Ryan will go to sleep at 8:00?  

Yes, absolutely.

I want to take a nap at 7:00.  

No, sweetie.  You will go to bed at 8:00.

Ryan wants to sleep in the airport!

No, sweetie.  You will sleep in your bed.

Ryan wants to sleep in the airport!  You will sleep in the airport, MommY!

After that interesting exchange with my dear 8 year old autistic little man, he was happy-skippy-hunkey-dorey.  He went right to the table to draw more elevators.

I wish I could say this was unusual behavior, but I'd be lying.  It's anything but unusual.  This is the kind of thing that makes autism the hardest for us.  The shock of the screaming, the yelling out.  The piercing of your heart upon hearing his frustration.  The inability to help him.

And this was an easy one.

Looking back, this one ranks right up there with Rain Man.  The scene where Raymond is being taken on an airplane by his brother, and he won't even make it to the jetway.  There's a bad work in here, just FYI.


That about five seconds where Dustin Hoffman's character is hitting his head and screaming?

Ryan does that all. the. time.  At least a few times a day, and it's almost never for that short of a time.  And so often we have no idea what is causing it.  Here it's clear that Raymond just cannot handle flying on anything but Quantas... but even if Charlie had managed to get a flight to LA on Quantas, if this was real life, there's little guarantee that Raymond would fly then, either.

He's an amazing little boy who will grow into a wonderful young man.  And this little meltdown, though much longer than the big-screen depiction, does not change that.  In the grander picture, this meltdown was pretty short... almost worthy of my "You call that a meltdown?!" rant from the first time I watched this with Eric.

This is our cup.  This is his cup.  And we will continue to love him, and help him get used to the world.   We'll also pray that the world will be less shockable as he learns.  We'll share our experiences in a good faith effort to help break the barrier of mystery surrounding folks who look, act, talk, and behave differently... and more extremely... than we do.

Because the same kid who hits his head and screams is the same one who remembers all the road signs, draws all the elevators, and recalls details randomly that amaze us.

This is the same kid who puts his chubby chin on my shoulder and says, "I love you, Mommy."

This is the same kid who says, "Mommy will sit on the couch!" and then proceeds to snuggle me.

This is the same kid who is starting to copy his little brother's likes, because apparently he's pretty cool.

This is the kid whose smile brightens a whole room, and whose giggle tickles my heart.

Thanks be to God for this kid, and for the difficulties, and for all they teach us.
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