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.

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. 

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.  

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. 

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. 

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! 

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!