Tuesday, April 30, 2013

Just One of Us Vol.2


This is a continuation of yesterday's post.  If you haven't been there, you might want to click here.  Back to your regularly scheduled post.  

Having practiced, written, practiced, stewed, scratched out, and practiced a little more, I still didn't sleep Friday night.  What if I misrepresented us?  What if I accidentally exaggerated?  What if this isn't at all what they wanted?  And the worst... what if I hurt your feelings?  I'm so NOT a public speaker.  

Right up to the time the coordinator of the BARC introduced me at the Gala itself, I fought the urge to cut and run.  As the parent speaker, I felt like I represented all of us.  I'm still thankful to Eric and his Dad for reminding me to take a step up... no really... so that I wouldn't trip and fall on my nose on the way to the podium.  Do those guys know me or what?  

So with part of my family's support in person and part back in Groesbeck caring for the kids so I could do this, through a a whirlwind of surreality, I made it to the microphone.  I told everyone that I'm Ryan's mom... and then it was on.

Ryan, our dear oldest, lives with classic autism.  He, unlike his neurotypical younger brother and sister, had no discernible words when he was two. He wasn’t speaking, gesturing, or nodding.  While other friends’ kids complained of their young ones yelling out for mama and daddy in the middle of the night, Ryan didn’t refer to us by name or look us in the eye.  He would play for hours by himself.  Ryan was unable to even choose, by pointing at pictures, what he wanted for lunch.  Any time Ryan was around other kids, he seemed to look for a corner where he could get away.  Given the opportunity, he would do this cute hand-flapping motion (which, I must say, is super adorable), concentrating so hard on anything that would spin. Although all these things seemed a bit off, the greatest concern was still that he wasn’t communicating.
 We called ECI, thinking that maybe he had a speech or hearing problem.  But through the course of the evaluation for speech, it was first suggested that he may be on the autism spectrum.
 NO!  This can’t be happening.  They’re wrong.  There’s nothing wrong with my baby.  I had heard just enough of the struggles of parents raising autistic kids that, in my mind, I could never deal with that.  That couldn’t be it, because there is no way I could handle that.  I prayed fervently that this cup would pass from my sweet boy.
 Time passed, and we still didn’t have a diagnosis.  Part of the problem is that we didn’t know what to do.  We didn’t know where to turn.  Everyone had advice. People emerged from everywhere who seemed to know what we needed to do, and that was all incredibly overwhelming, especially considering that most of their advice was different… not to mention completely out of our price range!  So we did what we could, which meant putting Ryan in summer school the week after he turned three. Not what I planned, but surely this would fix it all.
 Still, I prayed that it wasn’t autism.
 Through all this time, the flurry of paperwork and questions about whether or not he can kick a ball, walk backwards, take steps in stride, and the sea of hundreds of other questions, and over the next three years, we finally received an answer.  The day I knew the paperwork from his evaluation would be coming home from school, I searched his backpack and read through it all, finding his diagnosis somewhere in the middle.
 Even with three years to process it… even dealing with it every day… finally reading the words “classic autism” was still hard.
 Right toward the end of those three years, just when we began to reach the end of what we knew to do, we discovered the Baylor Autism Resource Center.
 Richie and Maelynn have grown up in the second floor hall of the Draper building, coloring, reading books, and playing quietly while their brother receives the ABA therapy he needs from the students of the BARC.  They adore their brother, so the fifty minute drive from Groesbeck to the Baylor campus twice a week is a part of life.   Richie even tried to convince one of our therapists that he had “autisites” too, so that he could go in to the fun room with all the toys with his hero.   To which, of course she smiled, and said, “Sorry bud… there’s no way you have autism!”
 I guess Richie figures that whatever Ryan’s doing must be pretty fun, because even yesterday he almost escaped into the BARC right behind his brother!
 But he has no idea the kind of work Ryan and his therapist are doing.
 He has no idea what it’s like to have to think about a response when someone says “Hello” or “What’s your name?”
 He can walk right beside me and stay with me in traffic, because he understands that while he thinks cars and trucks are cool, they can also be very dangerous, and that beside Mom or Dad is safety.  If I ask, I can generally get him to hold my hand.
 He has the words to tell me why he’s frustrated.  Uncomfortable.  Tired.  Sad.  Scared.  Hungry.
 He can transition from coloring to a trip outside or go to the bathroom when asked .  He can process that request, then carry out the task, anytime, anywhere.  Not that he always does, mind you.  J For Ryan, these things come much, much harder.  We fight to do every little thing with him, it seems.  Everything from a trip to the grocery store to an amusement park is something to be planned, social storied, and so often ends in screaming, hitting frustration for our oldest.
 At times, I must admit, it becomes quite exhausting.  And there was a time when we didn’t know where to turn, where a one-income teacher’s family could find ABA therapy, which I was quickly learning was the best thing to help ASD kids learn to navigate the world.
 Everyone we’ve worked with at the BARC has proven that to be true.
 Each one of the therapists Ryan has worked with through the BARC has been amazingly patient, caring, kind, and helpful and not just to Ryan himself!  They are always more than happy to listen to anything that would help Ryan, ranging from what kind of day he had at school to what problem areas we are noticing that need the most help.
 These ladies aren’t just playing with my son for an hour two days a week.  They are helping him learn to navigate the intricacies of life, from waiting to receive something he’s requested, to trying new foods, to transitioning between activates, to riding an elevator without having to be carried.  (yeah, that last one was for my back.  It was exciting…) Each of the exceptional young ladies with whom we’ve worked will always be special to Ryan and our family.  Each of them has spent hours in careful preparation and data sorting to show and explain Ryan’s progress, not to mention the hours they’ve given to the actual hands-on, in the trenches task of working with Ryan.
 These ladies are fearless.  They endure the meltdowns, the refusal to participate, the confusing and a times incoherent communication… and sometimes, that’s just dealing with me!
 We have always been thankful for the opportunity to participate in the ABA program at the BARC, and of course in the day camp, to which Ryan is already looking forward.  At the beginning, we thought we might be helping these students, and that this would be better than what we were receiving, which was nothing.  But in reality, we have received excellent ABA therapy from well-trained, caring, gracious, excellent individuals who emerge from every therapy session a little more in love with our little guy.
 These therapists are far more than we could have imagined.  They have been so much more than therapists.  They have been the hands and feet of Christ to our family.
 Your presence here tonight supports the furthering of the work of these folks who are giving the precious manna of affordable ABA therapy, social circles, and so much more to the ASD kids in Waco and the surrounding area.  By supporting the bettering of these children the way these people have worked for my Ryan, you are not just supporting a great cause… you’re investing in something that has been an answer to our prayers.  By being here tonight, you’re investing in hope.  Hope that says, yes, it is autism, but we’re here, and you’re anything but alone. 

In my relief to be finished and desperation to be back in my comfort zone between Eric and is dear parents, I looked up from the bee-line I was making to my seat, and saw what was one of the most humbling things I've ever seen.

You stood.

You stood not because I did such a great job of moving those words around, but because you are there with me.  And it was a relief to hear someone say it.

I still can't believe it.  I'm still thankful for getting the opportunity to speak for us.  My heart overflows with gratitude to the Lord for giving me composure.

During the evening, there was a silent auction.  There were so many wonderful things on which we could bid, but the one thing that we wanted was a painting Ryan helped with in therapy.  Sadly, we were outbid, but went home with our hearts full and our heads swimming in a sea of all the stories so many of you came forward and shared.  Full of your tears and your hurts and fears.  Full of wishing we could make things easy for all of us.  For all of our kids.

We got home, hugged and kissed on our kids and put them to bed.  Life is back to normal here, just pedaling through our days, doing our best to make the most of them.  But in some ways, it will never be the same.

Thanks be to God again for this opportunity... for carrying me through it... for your stories... for your every day... and may God be with you as you keep pedaling too.


Monday, April 29, 2013

Just One of Us

Have you ever been asked to do something you weren't sure you could do?

Has your mind ever been boggled as to why in the world they picked lil' ol' you?

Have you ever been so excited that you agreed to do said thing, only hit send on the reply email and think, "What in the world did I just agree to do?" 

About a month or more ago, I casually flipped open my dear MacBook to take a quick glance at email before heading off to check the dryer.  What I saw made me squeal, cover my mouth, and point at the screen.  Wondering what in the world it could be, Mother hopped from her chair to mine to see what it was that prompted that reaction.  

I called my husband... which, if you know us, is huge.  I only CALL if there's an emergency.  Otherwise, I text him so that he can check it between classes.  That way, he knows to answer at all cost if my ringtone flies from his pocket.  

He was floored, too.  

I'm still not sure why they chose me.  I'm humbled and honored that they did, and completely in awe of the opportunity to do what I did.  

It's not that I don't think I'm anything at all.  I do not think I'm worthless or anything like that.  The whole reason I couldn't... and still can't... believe it has a lot to do with you.

Yes, you.

The one who just cleaned up goodness knows what from your walls, your child, and your floor.

The one who got up when you heard Mooommmyyy or Daaaadddyyy... no matter how many times in the night.

The one who got up to screams from the child who doesn't yet have words.

The one who longs to hear your child say, "I love you, Mom."  Who longs to hear things like, "You know, Dad, I'd really like to have macaroni and cheese for lunch" or something similarly common... but not at all common to you.

The one who grew up going to therapy with your brother or sister.

The one who works with these kids day in, day out, missing time with your own kids, family, and friends.

The one who gives your heart to the boy who screams and hits... sometimes even you.

The one who puts her child in the grocery cart to keep tabs on him, even though he's too old.

The one who feels the stares.

The one who fields the painful questions.

The one who pours his heart, soul, money, and time into his children.

The one who doesn't get to go out with her husband, even on your anniversary, because it's just too traumatic for your little one(s) even with a qualified sitter.

The one who turns to so many for help, advice, empathy, hope... and is left even more broken hearted and empty handed.

The one who is spent.  All the time.

The one who is weary.  Tired.  Exhausted.

Yes, even though this was big to me, it's precious little in the trenches.  And I know that.  And that's why I'm so humbled and honored to get to talk to some folks who might be able to further an organization that has given so much to so many.

Because we're one of you.  Just one.  Just one family of so very many who deal with this.

We may have different diagnoses, different symptoms, different daily struggles, but we all sacrifice.

We all wish there was more we could do... give... be.

We all wish we could make it all better.

We all know the pain of knowing we just can't.

I know it wasn't that huge.  It's not like a dinner at the White House or anything.  It wasn't a great sacrifice.  All I had to do was talk about our life.  How this organization has poured into our lives.  Why it deserves the attention of anyone who can help provide what it needs to run every day, and why it should expand.

I don't know why they chose me, other than that's just the way God wanted it.  But I did it... and am humbled by it... for the same reason I come to the keyboard and do this.

You have to know you're not the only one.

You're not alone.

And you have to know that.  Someone has to tell our story.

Thanks be to God for you... and for those of you who listen to and help us.

Tomorrow I'll post more about it... so stay tuned!


Friday, April 26, 2013

Miracles in Time

Even miracles take a little time.  
~Fairy Godmother, from the movie Cinderella

You got slowly out of the van, as usual.  With Miss K's sweet assistance, you put on your Toy Story backpack.  I told you, "I love you, Ryan!"

With your back turned, you said, "I love you."

Then you did something else I thought I might never see or hear.

You defied your diagnosis again in so many ways with just two words and two actions.

You looked me in the eye, waving, and said, "Bye-bye, Mom!"

Proud, swelling with love and adoration, I waved and said, "Bye-bye, baby.  Have a great day!"

It didn't take long for all that love and adoration and pride to spill over.  Wiping the tears, I can't help but think of the way we started.  There was the first day ever of summer school.  It was the week after Richie was born that I cobbled together what I could of a special, memorable first day of school for my precious oldest.  You were little.  SO little.


To say that I wasn't ready is an understatement.  To say I wasn't ready for you to not care that I left is a gross understatement.  As my still very post-op body hobbled away with tiny Richie in the stroller, I tried to convince myself that we were doing the right thing.  

After all, you had no discernible speech.  You weren't gesturing, even.  At just past three... and I mean a week past three... your communication skills were limited to screaming, crying, and laughing.  You might have had three words, or that's what I said.  Looking back, I think I just couldn't bear to admit you didn't have any.  

But now, to refuse to admit these things is to rob you of the amazing progress we have seen.  

Oh, we're not through.  Your challenges still warrant about three different kinds of therapy... more if we could afford it.  If we had time for it.  If it were offered where we are, even.  

Although we're feeling our way through this every day, although we feel like we have no idea what we're doing, we see progress.  It's not immediate.  It's not going to be.  But it is a miracle, none the less.  

Raising you... living with you... helping you seek the best life you can have... has taught us that miracles do happen.  They happen all the time!  The tragedy is that we dismiss them when they're not immediate.  

The fact that you looked me in the eye is a miracle.  

The fact that you tell us in words that you love us is a miracle.  

The fact that you can understand the social nuance of waving is a miracle. 

Your smiling eyes, my dear son, are a miracle.  


Just as I reminded you this morning, sweet guy, you are going to have a great day.  Mommy and Daddy thank God for you every day.  Most days we do the best we can, we go through the routines and courses of the day, still thankful but just not noticing.  

Other days?  

Well son, on some days we look where we started and we just have to rejoice and praise the Lord for all he has granted.  And we pray you will do the same.  

Thanks be to God for Ryan and all that he's been sent to show us.

Tuesday, April 23, 2013

Sick?

The past couple of days, autism has had me on the ropes.

The beginning, if you scroll down a bit, was Sunday morning.  Sunday afternoon was the biggest meltdown my husband had ever had to deal with by himself when he took Ryan into a store to use the bathroom before we left for home.

He was pretty quiet, then we got home, changed clothes, and started working in the backyard flowerbed.  What he wanted for dinner was not what we had to give him.  That started a whole afternoon of screaming, yelling, hitting, and of course... you guessed it... demanding.

I'm proud of us.  We remained calm, which is not at all easy.  We're talking a LOT of screaming, folks.

Monday morning rolls around, and Ryan's up and happy to eat his waffles.  Not happy to get ready for school, just happy to eat breakfast.  He did, by the way, eat dinner.  Go figure.  I did notice that he was pretty hoarse, but what do you expect after all that screaming?

9:30 or so rolls around, and the phone rings.  A quick glance as I pick up the phone shows it's the school nurse.

Lovely.

He is hoarse, says "Are you sick?", has white streaks on his throat.  Here we go.  Clad in my dowdiest laundry day garb, I headed out the door.  A glance at him told me that maybe he might be sick.  His aid, who knows him almost as well as I do, seemed convinced.  Okay.

Soon as he walked in the door, my sick son shucks his backpack and coat, runs to the living room, and starts chasing his brother and sister.  Then he's off to his room to play with his Toy Story toys.  When I went back to visit him, he spouted, grinning, "School is on a break for seven days!  You're sick!"

Busted.

After a flurry of phone calls, discussion, and more than a little frustration, we headed to Waco early.  I am bound and determined for him to make his ABA session, and I am certain he's not sick.  But the nurse told me he was, and I felt like it was my duty to make sure the kid really wasn't sick.  Add to that the fact that if we could see someone in town, Ryan's medicaid would pay, but we had to wait for an appointment and miss our therapy session.  If we went to urgent care in Waco, we could make our ABA session, but it would cost us $50.

I drove the whole way talking myself out of being frustrated.  It wasn't working.

Once in the room with the doctor, Ryan was being himself.  Push every button, turn every knob, flip every switch, pull out every drawer.  All this while giggling and walking all over the place, asking when we'll go to the hotel, the usual stimmy questions.

Once the nurse had administered the throat swab, which Ryan rocked like a pro, the nurse left and the doctor came back.

Over the next ten or fifteen minutes, it became apparent that this trip to this doctor wasn't for Ryan.

He could tell we do our best.   He could tell in five minutes or less that we don't back down.  In a way that is best for him.  That we know him... and know more about how to deal with him... about autism itself... than he does.  He admits that doctors don't know enough, and weren't taught enough about autism in school.  He admits that he learns the most from moms like me.

And you.

And dads like you.

He urges me to keep my head up.  To keep going.  To not quit.

It's all I can do to keep my composure.  I want to cry.  I want to break down and fall on the floor, weeping over the frustration of today and a thousand yesterdays.  Over the relief of having someone who doesn't even know us look at me and tell me everything I needed to hear.

The poise he said he saw in me is something I seldom see in myself.  I see myself as a cross between "Pig Pen" from the Peanuts cartoons and a horse in a fire.  Jumpy, messy, scattered, and ineffective.  

I don't know what's next.  I don't know how to keep my own child from screaming until he blows out his vocal cords.  I don't know how to get him to tell a stranger his name.  I don't even know how to get through a day at home without a problem.

But I love my son.  I love his brother and sister.  And I can trust in the character of the God who set the planets in space and flung the stars in the heavens to give me the grace, mercy, and patience I need to do what he's set before me.  I can trust that he will forgive my mistakes, my frustrations, my sinful and selfish nature, and redeem my messes.

Thanks be to God for the ones willing to pay attention and encourage someone they know they'll likely never see again.  And for Ryan.

And for you.  Keep going.


Monday, April 22, 2013

There's a Reason for That.

On Facebook this morning, I saw THIS.

Then, I posted this.

"So yeah, there's a reason for that."

There is absolutely a reason for that.

For a long time, I thought the reason was other people and their reactions.  Well, I told myself that, anyway.  For a long time that was true.  It still is a small part of why it's hard to get out of the house.

Here's the hard part to admit.   It's just no fun.

What could be more fun than an outing with the family?  What's easier and more satisfying for the kiddies than a trip to the city park?  Hey, it's cheap, right?

When the kids were little and money was even tighter, a trip to the park was a way out of the house.  a trip to the local store to just walk around when it was rainy was perfect!  If Ryan got fussy, we could pick him up, hold him, and generally make things okay.

Fast forward to nearly 8 years old, and an 80 pound Ryan is not so easy to pick up.  Or console.  Or stop, for that matter.  He's quick and he's fast.  He can nearly knock me over, and I'm not a little girl.

Yesterday after CE, he ran toward the microwave in the church cafe.  He's been doing this pretty consistently, but this time I was able to catch him.  Blocking him with my body, I reminded him in the calmest yet firm voice that I could that we have to be calm or we can't go where we usually go for lunch.  It goes a little something like this:

Mommy:  "Calm or no Star."

Ryan: "YAAAAAA!!!!  YES STAR!!!!"

Mommy: "Calm or no Star."

Ryan: YAAAAAAA!!!!  YES STAR!!!!  NO CALM!"

Repeat ad nausem.

At one point, his CE helper came by and reminded Ryan that he has to be calm and tell us what he wants.  Ah, something new to say! So I repeated that until finally and all of a sudden, he quit pushing me and yelling and said, "Crayons!  You will color!"

Well sure, buddy. No problem.  You ready to go sit with Dad?

Yes.

Alright then.

Even then, though, Ryan is a tank.  If he's determined to go somewhere, he's going to go unless a brick wall stops him.  There is very little convincing him to calm down.

Now take all I just shared, take it out of the safe environment of church (which is completely within our normal routine) and stick him somewhere in public.  Let's say we stick him in the middle of the grocery store, where not only do I need to be able to use my hands for something other than guiding him, but I need to think.

See where I'm going?

There was something I really wanted to do yesterday.  This was one of those things I dreamed of doing as a mama of three kids, or even more.  A wonderful church lunch to benefit the youth.  And I'm sorry to say that I didn't have it in me.

Mamas, Daddies, Guardians... please, please, please know and accept your limitations.  Learn when to push past that feeling of dread and when to admit your blood pressure meds aren't going to cut it for this one.  Yes, we might have been okay.  It might have even been fun.  But although I was disappointed that we didn't go, Ryan had such a full-scale, all-out screaming-bloody-murder meltdown that evening that I'm sure we made the right decision. He just wasn't up to it.

Listen to your instincts, parents.  God gave them to you for a reason.  He gave us Ryan, Richie, and Maelynn for a reason.  We know them, we know our loving church family.  But we also know the statistics on wandering, elopement, and drowning with autistic kids.

And we also know that the church loves us whether or not we made it to the lunch.

Maybe next time, but for this time, it was best to stay within where we know our little guy operates the most comfortably.  This is not the same as quitting.  This is not giving up.  This is being real about who you are, who your family is, and what you and your child can handle.  There will be other church dinners, and we will try again.  For yesterday, we did the best we could.

Today, we got up and did the same.

We will do the same tomorrow.

Thanks be to God for the comfort of boundaries, for the courage to stretch them, and the wisdom to know when enough is enough.  

Saturday, April 20, 2013

Where There's Smoke

When hanging out in mommy circles, as I get to do every now and again, the potty training thing often finds a way into the conversation.  There's almost always someone who is having an issue.  Oh boy, do I ever know that frustration.  While I never want to make human suffering out to be something we should compare and try to one-up each other on, sometimes the mere sharing of the truth can make it sound that way.  How?  Here you go.

After my daughter was born, we had three in some stage of diaper.  Ryan was five, Richie was 20 months, and Maelynn was, well, a newborn.  

There.  I said it.  I know that this isn't the worst case scenario in human history.  Depending on your perspective, it's not the easiest thing either.  It's like my high school band director taught me.

"There will always be someone who plays better than you, Crystal."  

It's still true.  There's always someone smarter, with a cleaner house, with a better blog, better behaved kids, and who makes more money than you do.  Who picks out nicer outfits, brings a better dessert to the potluck, knows more about a certain subject than you do.

Over the years, and especially through tougher times, I've learned that there is a flipside to that wisdom.  There are folks who have it worse than you do.  There are people who can tell you stories that would curl your hair and make you thankful for what you have.

But here's the thing... that only works for a little while.

We have three beautiful children.  Each child you have will be, at some point, in need of some kind of potty training.  If not, there is something you have to do to take care of this part of life.  For a little over a year now, I've been grateful to not have much of a potty issue with our oldest.  In the last few weeks, when the topic is raised, I'm sorry to say that I've not had much to say.  I used to say that Ryan is completely potty trained.  No mega-disasters anymore, thank the Lord.

Thank the Lord.

Thank him indeed for that time.

For now, it is over.

As someone who deals with this, I can say two things.  One, that I do hope it doesn't happen at your house.  Two, that I know so many other people have it worse.  I know that I should be grateful that he only smears what is on his hand if he happens to get it on his hand on the wall to get it off, not to make art.  I know we should be grateful that we're not buying diapers for him, and we truly are.

But when you're getting your son out of the van to go in somewhere after school and that smell stings your nose, it doesn't help.

When you're telling your nearly 8-year-old that no, he cannot have a pull-up, no matter how sweetly he asks, it doesn't matter that someone has it worse.

What is hard is just hard.  There is no frustration-o-meter that gives us the right to tell anyone else how they should feel, react, or be.  I am grateful that it's not worse.  But being grateful that it's not worse does not mean I won't wish it was better.  And being sad and frustrated when it's hard does not make me a bad or ungrateful mom.

I had a great time getting together with some ladies last weekend who are mostly moms, mostly with kids younger than mine.  The topic came up.  I was honest, saying that at one point we had three in diapers, now we're down to one, and I wish I could say that it was all smooth-sailing with our oldest.  The truth is, lately it hasn't been.  I even said, out loud... kinda before I could stop myself, "I can't lie.  That's just how it is right now."

Guess what I was met with?

It's okay.  Truth is good.  A smokescreen isn't.

Whatever is hard, I hope you have someone who will hear the truth.  Who will hear the truth and know you don't want anyone to feel sorry for you.  Someone who will know that sometimes you just have to say it out loud.

Sometimes just saying it out loud helps.  Even if people around you just nod.

The comfort of being able to admit it... the safety of those who, though their problems are completely different than yours, are secure enough to listen without having to fix it... is the safety we all need.  Neurodiverse, neurotypical, regardless of other differences, we all need people who will love us by hearing.  Because when it comes down to it, no one can fix it.  Maybe we don't even understand it, whatever "it" is.

To sit with those who know the one who does, and who are not shocked or shaken by your issues is at times the most comforting reminder that God isn't shocked or shaken by our problems.  Even the ones we can't bring ourselves to voice.

Thanks be to God for truth, and for the hands and feet that allow us to be comfortable enough to drop the smoke screen, for they bring comfort.  




Tuesday, April 16, 2013

Show me the Signs

Yesterday, our ABA therapist wasn't feeling well, so we stayed home.  For me, it was great because that meant an afternoon to slay the laundry dragon, who otherwise stays until about Thursday.  I mean, I was sorry she was ill, but oh, to not drive to Waco for just one more day!   We called the school, and thankfully Ryan took the change in stride.

Once at home, we started homework.  Well, we started homework after the usual amount of "NO HOMEWORK!" and general herding in the direction of the table.  He wrote his first two spelling words, then began to draw a square on his marker board.

I reminded him again gently that he should erase and please write "bright".  Nothing doing, he was still going on whatever it was he had in mind to write.

Then I had to start taking pictures.

This kid amazes me.


Yes, that is "Right lane must turn right."  Then he erased, and began another sign.


After the sign that says that the right lane must turn, we merge, when we're going home from therapy, onto this road... going this direction. 


Then, we merge onto 164.  


164 Texas East, of course.  And just look at that adorable stim, would ya?  I mean, if there were a hand-flapping contest, my boy would certainly be in the running for a prize.  It's adorable. 


Check out the hand-flapping action in this one.  This kid is really into these road signs!  


After 164 Texas East, at a stoplight in town, we cross highway 14 to get home.  


Whenever I think it might be easier to keep him home from church, whenever I think he's not paying attention, he does something like this and reminds me that  HE IS LISTENING.  

He is watching.  

He is absorbing.  

He is paying, so many times, more attention than I am.  

It makes sense, if you give it a bit of thought.  He's not worried with what others are thinking about his shoes, his clothes, his hair... he's being Ryan.  

I look at him so often, wishing I could unlock his thoughts, and maybe free him from the bonds of not being able to communicate his feelings verbally very affectively.  To help him learn social graces, more rules of general conduct (Like don't belch in church.  Yeah.  We're there.  Not just in the hall, but in the fat middle of the service.), and how to navigate all these things in life.  

But maybe, in some ways, I'm the one in bondage.  

What did they think of what I said?  Did I say too much?  Is this shirt okay?  Is my hair too homely?  Is my van too dirty?  Did I sound stupid?  Did I do a good job with that?  Did I make her angry?  How will I navigate *insert awkward social situation*? 

But Ryan?  He is who he is.  

He drinks his surroundings.  He notices, appreciates, and enjoys things I don't even notice.  

He lays in the puddles on the narrow concrete path in the backyard, letting the sprinkler wash over him.  

"It's raining, Mommy!"  

He stims, eyes wide, as the droplets splash in the puddles right under his nose.  This is pure, unspoiled, unadulterated joy.  My first thought is that he's not concerned a bit with those around him, but it's much more than that.  

He's seeing more than I see.  Maybe someday he'll put it to words.  Maybe I'll get to hear his description of what I'm seeing before me as what looks like a precious little boy enjoying a puddle.  

I sit in the floor with him, I play alongside him.  I reach out and hug when he allows, we roll on the floor and play.  I long to see inside that mind.  To hear the concerns of that heart.  To know what scares him.  What I wouldn't give to slip inside his skin for just a little while.  

But even if he doesn't ever have the fluency of words to express what he sees, I will hold these precious glimpses into his world close as reminders that he is listening.  Not just listening... he is learning.  Feeling.  Growing.  Building on what he knows.  

And oh, how I pray that I'll not operate just try to make him understand and function a little more smoothly with the rest of us... but learn to be a little more like him.  

Thanks be to God for the signs.

Monday, April 15, 2013

Show Me How to Walk

Last week, we went to the Waco Walk for Autism.  Last year's walk was great, and we were looking forward to having the same kind of experience.

As usual, there were musical acts, and all kinds of wonderful families and friends there to support the ones they know and love who have autism.  It's a lovely event, blessing so many in several ways.  It's well-put-together, with volunteers who understand what all this fuss is about.  We are proud of these folks, we are thankful for all they do for the autism community in Waco, and we were so excited about having a chance to participate!

Last year was almost magical.  All the kids took to the games and charming the volunteers like ducks to water.  Everyone found something or a few somethings they wanted to do... even Ryan!  He played in shaving cream, walked a lap with us (okay, so he was on my shoulders), and the crowd didn't seem to bother him a bit.

In the parking garage I could tell that this was going to be different.

I had bought super-kid capes for the kids to wear.  Ryan, because well... isn't it obvious?  He overcomes so much every day.  We can't even begin to know what he faces each day in this strange world.  Richie and Maelynn earned their capes, too.  They are super siblings to Ryan, being his friend, understanding even when he accidentally hurts their feelings, seeing how much time we spend with him and loving him and us anyway.  They are most definitely super too!

The only thing is, they didn't see it that way. Richie wasn't at all inclined to wear his cape.  He actually woke up that morning reminding me that he didn't want to wear his "costume" as he called it.  Okay, fine.  I took it anyway just to see if he changed his mind.  Ryan was interested in the mask the day I brought it home, but on the day of the walk he was not the least bit interested.  Maelynn, on the other hand, thought the cape was pretty cool.  So she wore her pink and purple cape with pride.





And I gotta ask... how many 18 year olds would give up sleeping in the day after prom to go to an autism walk?  I can think of one, and she was at our house pressed and dressed and ready to head to Waco to church with us at 8:00 AM.  Oh man, am I ever going to miss her next year. 


The seven of us had fun watching Ryan play with sidewalk chalk, that is until he saw an elevator.  He could see through the front of a building to the elevator, and well... moth to a flame. But he did draw a great microwave first! 


After this, there was a lot of general Ryan-herding and chasing.  He wasn't interested in any of the games until we made it around the loop to the bubbles.  Then our little Mr. Sensory was happy splashing, sloshing, and waving the bubble wands around.  

But the whole time, I kept hearing "go to the SAAAND!!!"  There was a booth with a kiddie pool full of sand last year, and the whole time he sought the sandbox.  

To tell the truth, I didn't want to write about this one.  I wanted to shove the memory of how great it didn't go, or maybe just give you the highlight reel of pictures, because they look like we were having a fabulous time!  

But that wouldn't be the truth.  

I was worried the whole time.  Ryan wanted to run from the crowds.  He wanted the sand.  He wanted the elevator.  It was an open space, and the kids were wearing the same shirt as so many others.  I spent the whole walk being nervous, hoping he wouldn't run, get lost, or melt down.  At one point he became interested in a drainage grate on a hole in the ground!

So again, just when I thought I was used to this autism stuff, it sucker punches me in the gut.  

I call for hope and understanding and acceptance, but I still struggle with it in my own heart.  

What did I expect?  Was I thinking at all when I planned this?  

In planning the trip, did I bother to consider the reason for the walk itself?

Sometimes, just when we think we're doing pretty well and we have a handle on things, we're ripe for growing.  

The other day, on the way home from one of so many trips to Waco, Richie and Maelynn insisted that they wanted to go on the high road.  A quick look ahead revealed exactly what they wanted.  The on-ramps for I-35 north and south are brand new and stacked high above the loop, and they were just ahead.  

After explaining where both roads lead, I told the kids that those roads may be pretty, they may look like more fun, and they may even go more fun places... but we want to stay on the road that takes us home. 

It may not look pretty.  It may not have many people on it.  It may not even look like we thought it would.  But the road that takes us home is best.  

So after trying to get Ryan to do what we wanted, we finally wound up here. 


He traced the letters with his fingers.  The sign was smooth but rough, maybe molded concrete, with the letters chiseled under the surface.  He loves text.  He loves to write numbers and letters of his own accord and when it's his idea, and you know what else?  Richie is doing the same.  


He is out of the discomfort of the crowd and the noise.  He's with his people.  He's tracing letters, enjoying the feeling of the surface.  He's asking for the elevator.  

He is being my son.  

Richie and Maelynn stood right with him, clad in their walk t-shirts, Richie snuggling his autism awareness t-shirt clad kitty that he dressed himself and Maelynn in her super-sister cape.  They didn't question why he didn't want to go to the games.  They didn't question him beyond "what are you doing, Ryan?"  When asked if he'd like to go back to the games, Richie said that he wanted to stay with his brother.  

I pray that I will stay with Ryan.  That I will learn to love him the way Richie and Mae love him.  

I pray that the Lord will help me to see him as he is, to love him as he is.  To build on his strengths and shore up his weaknesses.  

Help me not to miss who he is, because you made him wonderfully.  


Thanks be to God for Ryan, Richie, and Maelynn, and for all they teach me. 






Tuesday, April 9, 2013

Whew. And WOW.

 Around twelve years ago, a teacher walked into the band hall and to my office, asking if I could sit in on an ARD meeting.  Sure.  No problem.  Who's the kid?  

I couldn't pick the kid out of a lineup.  They just needed his or her music teacher's body.  

The kid was in the fifth grade music class I'd just received in my next nine-week rotation.  There were upwards of 25 of them at a time, and I simply hadn't had them long enough to know who they were.  

Once in the room, they filled me in a bit, just enough that I wouldn't look stupid.  I don't remember anything about the specifics of the IEP.  I just remember the frightened look on the mother's face.  

I remember trying to smile, to make her feel better.  

I remember what in the world she was so worried about.  What she was so scared of.

I remember walking out of the room when it was over, thinking that maybe what I'd just done wasn't the way it should be, but hey... I'm just doing my job.  

Fast forward to yesterday.  After I scanned the elementary parking lot, I began to text Eric.  I didn't want to go by myself.  Maybe it's all about being a team.  Maybe I'm just a chicken.  But I wanted him with me.  

This was not our first ARD.  If I really wanted to, I could do the math and tell you about how many we've attended.  And it just doesn't get easier.  

And now I am all too familiar with the fear.  

It is far too flippant to say there's nothing to worry about.  This is my child's every day.  This is what he does, this is his education.  More than that, this is his quality of life.  For someone who isn't a fan of confrontation (to say the least) these things are like pulling teeth.  

We had to wait in the office for a minute.  Out came the assistant principal, and off we went together.  Eric is good at making conversation as we go, and the best I can do is to keep my breakfast in place and plaster a smile.  

We sit at the big table, meet the new diagnostician, say hello to those around the table.  Any other time I could talk my head off to these very people, but for some reason it's painfully awkward.  I don't know why this surprises me.  We're all waiting for the same ride to start.  

Speech goes first.  They tell us what they're working on, we make sure she's aware of our concerns and goals for him.  OT wasn't available.  We go over and around, allowing time for each to report on Ryan's progress in her area.  

Then comes the hard part.  

Ryan is not thriving in the classroom.  It's overwhelming.  He shuts down.  I stumble over words, trying desperately to pour our heart on the table for Ryan.  Coherent sentences elude me.  Staring at the table, fumbling with my pen, I finally manage to get a wheel turning.  Then another joins.  And another.  

We each bring a part.  No part is less important than another.  Everyone knows something that someone else didn't know.  

We learn that Ryan loves to run.  Unlike his parents, who both writhed at the bottom of that blasted rope while the other kids shimmied straight up and rang the bell, PE is actually a great time for him.  

We all smile and giggle a bit about his love for the microwave, and the fearless way he attempts to pronounce and spell words.  And let's not forget the way he writes in digital letters and draws microwaves and himself serving from them.  




It gradually boils down to how best to educate Ryan next year.  

In this game of educational Jenga, each player must confidently pull from the stack, but as kindly as possible.  A time or two the tower shakes a bit, but with a clarification it steadies again.   

I slowly realize that all these people really care what happens to our precious Ryan.  There were no less than ten of us.  

It's decided that Ryan will be with the Life Skills teacher in the intermediate school.  Never mind that he's supposed to go to second grade.  Every hour of his day is perfectly chosen and built to suit him.  The paperwork will be done to fit Ryan, not Ryan's life to fit the paperwork.

Thank God.  

We all agree.  He needs to be pushed to socialize, he needs to be pushed academically, but maybe not at the same time.  But both have to happen.  

Eric and I thank and thank and thank these ladies for their love for our Ryan.  We're honest with them.  This frightens the dog out of us both.  But every time we're met with people who truly care about our little guy, and by the time we leave, we're reassured that our concerns are heeded and our son is precious to them, too.  

And our ARD meeting ends, again, in tears and hugs all around.  

We'll have bumps in the road.  Things will happen that not everyone is happy with.  But on the whole, yet again, He who promised us is faithful.  

Thanks be to God not only for his providence, but for the faculty and staff of Groesbeck ISD.  We may be out in the middle of nowhere, but our son is cared for in ways that we couldn't buy.

And thanks definitely be to God for our little superman.





Monday, April 8, 2013

ARD Day

I've said it before, and I'll say it again... raising an autistic child is like crossing a six-lane highway at rush hour, blindfolded, trying to find a nickel on the way.  Here are your options, pick the right one.  Everyone has an opinion.  Every parent with an autistic child has a set of things they'd do again in a heartbeat, and those they'd not wish on a dog.

Thing is, the thing you wouldn't wish on a dog might be the best thing in the world to someone else.

We're given a suggestion in the beginning from a doctor, people who have our kids at church, Mother's Day out, and from family members in the beginning that something isn't right.

From there, it's a spiral of confusion.

To whom do you listen?  Whose advice deserves heeding?

In the end, it's what's best for your child.  We search, we study, we listen.  But what's the right thing?  Which way do we go?  What's right?

On Friday, I received a call from our director of special education for the school district.  I am grateful for this call, let me get that out of the way.  I'm grateful for her time.  She didn't have to call me.  She could have let me be blindsided by what the pre-ARD (yeah, I just learned they did that) was going to suggest.

Before I say it, we've been riding high for far too long on the fact that he did kindergarten with no aid.  I guess we assumed that this was the insurmountable, and the rest was downhill.  Silly mommy.

First grade, even with a stellar classroom teacher and equally as stellar resource teacher, needs the classroom aid.  A lot.  Like way too much.  I've known that his behavior has been an issue.  They communicate with us, we support their needs at home as much as possible.  We do our best to continue what they do at school discipline-wise at home, being as consistent as we can.

The call was to tell us that the suggestion is going to be to add Life Skills into his day.

I didn't know what to think about this.  I've been told that there's no way he needs to be in a self-contained classroom, and I think in kindergarten and first grade, that's been true.  But the truth is that the sheer amount of stuff to take in is just too great.  Too disturbing.  He's not learning as much as putting up with the discomfort of the room.  Even with the aid, with a super-understanding, organized teacher, he's just not thriving.

I can't tell you how embarrassed I am at my internal reaction.

She might as well have kicked me in the chest.

Just when I think I've accepted who my son is, what his challenges are, and I love him for who he is, I'm caught off guard.  I didn't know what to think.  My head was swimming.  The special needs director even gave me her cell number and told me to use it if I had any questions.  My reaction?  As politely as I could muster, this is what I said:

Thank you.  If I figure out what the questions are, I'll ask them. 

Is this what I was hoping for?  No.  But what I was hoping for wasn't best.  I worried all weekend.  

Sunday morning, when I picked Ryan up from CE, I realized there was someone who was educated, experienced, and knew my guy.  I couldn't get to her fast enough.  In just a few minutes, I had an opinion that sifted the others and funneled the noise into something I could understand.  

I'm thankful for so much this morning.  But more than anything, I'm thankful for a God who hears my cries.  Who has my... and Ryan's... best interest at heart.  It's no accident that we called Redeemer a couple of years ago and asked if we'd be welcome.  It's no accident that there's a lady with a heart for kids like Ryan who is with him every Sunday.  

So I'm off to the meeting.  I'm still a bit nervous, but I know it will be okay.  Why? 

Romans 8:28. 

And we know that for those who love God all things work together for good,for those who are called according to his purpose.

Thanks be to God!




Thursday, April 4, 2013

Brushstrokes and Memories

We have so much different.  We have so much hard.  There are times in great supply when we wonder how much more we can take.  There are so many times that we just so want to make sure the kids have great childhoods and try as we might, it just doesn't seem like that's happening.  

Holidays are hard in new ways.  

Broken routine is everywhere.  New stuff adorns a few parts of the house, mommy is busy cooking and baking, there are extra people.  

I looked forward to this as a child.  Very few of the people I looked forward to seeing are still alive.  Sometimes they're at my house!  Other times, we're with the newer folks I look forward to chatting with around the table.  

There's always been something about the table in our family.  Everything seems to happen around the kitchen table.  I sat for hours on my mom's lap as a child, listening to the adults visit over coffee and pie, beer and chips, beans and cornbread.  I couldn't wait to be able to sit and visit like they did.  With them.  

I guess I didn't realize they couldn't wait for me to get older.  They all got older too.  

But as they fade away, as they go on to be with the Lord, new folks come along.  The younger ones get older, as did I.   Just look at this beautiful young lady holding my daughter.  










That's my baby sister!  Would you believe she was in my lap in high school and college just like I was my mom's?  And now look at her.  We had a wonderful time being together over the weekend.  

Someday this little lady will be at the table, too.  And Lord willing, her little ones will join us as well.  


Can't forget the boys.  Oh, my sweet princes!  Here's the family shot, also known as the best I could do before they were ready to grab their shorts and t-shirts.  I think I actually mentioned to them that they should humor their mother.  Two of them were still.  I think that's a pretty great score!


Richie will join us to visit around the table.  Maybe not all the time, because he does like quiet.  But he does love his family.  

Then there's our big boy.  The one who is teaching me to love.  The one who God used to stretch my definition of what love is.  What faithful is.  

He remembers the kitchen table I grew up around.  He asks for the hands who taught me to prepare the food to draw the important ones.  

I wish he could tell me what he remembers, but he remembers.  The littles don't, or they don't remember much.  They were simply too young.  But he remembers her.  And her microwave.  It was black.  He's right.   

I remember dropping eggs in brightly colored cups with the one who helped them Saturday.  We used Nanny's white cups for the deep colors.  They were just the right size.  I remember the pretty blonde girl as she dyed her fingertips as much as the eggs as the same fingers show my precious ones how it's done.  

The eggs bring more memories.  The yellow counter, the dresses that came with sunhats.  The sunrise service, the pies, the ham, the sprawling backyard and the twenty-four technicolor eggs we hid... or were there thirty?  




















Just twenty-four.

And as the hunt commences, I remember another little boy and little girl hunting eggs.  We hid, they hunted, then repeated.  Then there were the baskets full of candy and bunnies always waiting in the front entrance.




















He loves microwaves.  He draws them, looks at them, remembers them.  He hasn't been to Nanny's in nearly three years, and he remembers what kind of microwave she had.  He can tell you not only the color, but the brand, and that it had a turntable.

The anchors in his memory may be different than mine, but they are there.  Maybe someday he can tell me what else he retained from those days on the hill on Morris Creek road.  But the memories I have painted a backdrop that each of us in the family has a part of.

The rest we paint as we live our days.

From bright to dark, sparkling to dull and every shade between we dip our brushes and paint our family culture.  Starting with the set we were given, we add a bit here, erase a bit there.  We cover over the things we didn't like, looking to the Master Painter to choose our colors more cautiously.  Carefully.  Purposefully.

Because they remember.

We read the stories of Christ's death, burial, and resurrection because they remember.

We do the Easter things we do because they remember.

Because just as you can't see what multicolored fingertips bring to my mind, we can't see what Nanny's black microwave brings in Ryan's.

Because I hope and pray that they remember these things we did and see not just some good memories, tasty food, and people they love... but that they see the love of Christ in every brushstroke.

Thanks be to God for the brush, the colors, and the inspiration.


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