Monday, November 25, 2013

It Came to Pass

It began on a night when all seemed right with the world.  With Eric out at an away football game, Mother and I took the kids to do a little window shopping.  Well, mostly window anyway.

This was the absolute best evening.  No problems, meltdowns, or other issues.  I walked out of Target feeling like maybe I'm NOT the world's most cranky mother!  The cheeseburger was even correct in the kids' meals on the way home.  Cheese and catsup only... and he gobbled it with not so much as a blink of displeasure or contest.

We drove into the carport at the end of the about forty-five to fifty minute journey home, piled out, and changed into pajamas.  In my haste, I messed up one little nighttime thing, but went back and fixed it and put the kids into bed.

Two steps out of the boys' room, and it pierced my head.

This is one of those places where it's strange.  Unique, maybe is a better word.  It takes a hammer and chisel to the cords of patience at my very core.  And at the same time, I'm rejoicing.

Opposite ends in the same mind and heart at the same time.

He screamed for me.  Bloody-murder, like there must be either a fire in his bed or a marauder rapping on the window.  Over the next two hours, he would do this about every eight minutes.  Never gave a real reason.  I brought him to the kitchen, gave him water, showed him the slow-in-the-dark shirt in his closet wasn't a real skeleton, re-did lip medicine (his term for chapstick), talked, prayed, and everything I could think of.  I re-explained where his daddy was, although he's grown up with Dad out on Friday nights in the fall.

In the end, it was "Ryan, I don' like the game we're playing.  You need rest, I need rest.  You have to calm down and trust that you'll be okay and sleep."

Or something like that.  Honestly, I was so fried I don't remember exactly what it was.  But I know it wasn't my most patient moment. I was tired and in tears, and in complete disbelief that my boy who had gone to bed without issue from the time he was three was now screaming and crying for me at the top of his lungs.

Knowing from reading some of your blogs, Facebook posts, etc. that sleep problems are often part of autism, panic set in.  How in the world are we going to deal with this?  A thousand things ran through my head.  He shares a room with his brother!  How will Richie react?  What if I'm setting a precedent every time I walk through that door?  What if I'm marring him by firmly telling him (after checking over and over) that he's okay and needs to rest?

After a few days he figured out that Mommy was not game.  Once Daddy was home more and began putting mim to bed more often, it became Daddy's turn.

It took about three weeks, all told, to iron this out.  And we're not sure we're done.

The whole experience reminded me of one of my favorite bible passages, as I heard on a Mark Lowry bit one time.  Here goes... this is profound, and you don't want to miss it.

"And it came to pass..."

It came to pass.  Nothing comes to stay, no situation good or bad.  It may be a moment, a day, a week, a month, or years, but it too will pass.

What will remain from the good and the bad is what we learn.  What we enjoy.  What we hated so much that it lived as a catalyst for change in our lives.

I don't know how long it will take to work through the current fascination we have with YouTube.  I don't know how long we will be scouring the world for elevators to avoid.  I have no idea how long I will have to hold on to and watch my now-eight-year-old like he's three.

But I know that he was put here for me to enjoy, learn from, teach, guide, protect, and love.  All our kids were.  I know that he was made fearfully and wonderfully, in God's own image just as we all are.  And I know that in the end, we will rejoice together in ways we can't yet imagine.

As frustrating as life can be for him, each frustration does pass, even if just for a time.

Thanks be to God. 

Friday, November 22, 2013

Hey, You...

Hey you.

Yeah, you.  The one scouring the internet to find a scrap of hope, relief, or just empathy.  The one whose child's diagnosis still hangs in a cloud over your head.

I want you to know something.  Something that I had to learn the hard way, and still have to remind myself every day.  I still have to shut out the guilt, the frustration for feeling this way.

It's okay to say it's hard.

It's okay because it's true.  There are days when I wonder... no, panic... over what this life will look like in five, ten, fifteen years.  There are days when I think I must have to live forever, because what will happen to him?  He flips out on the rare occasions I'm in the back taking a nap.

To be forced to pretend that it's easy is untrue.

Saying that it's hard, whether it's among friends, family, therapist, or on your knees, does not equal ungrateful.  What does it equal?

Realty.  Truth.  Honesty.

Do find someone you can be brutally honest with.  Your innermost frustrations and hurts are precious pearls, and not everyone knows how to treat them.

Hear me... my child is not a burden.  He is amazing, wonderful, and one of the greatest blessings in my life.  But there are circumstances at times that feel burdensome.  There are moments when the decisions to make and the things to do and the importance to someone else's life that they hold is crushing.

I need... and you need... to be able to say that it's hard without someone telling you how terrible it is that you think it's hard.

We need a safe place to air our exhaustion, knowing that we won't be judged any more than the friend who vents about kids' scheduling issues, doctor appointments, sick days, and the like.  Admitting that these things are hard does not mean that these parents think their children are burdens.  They are just dealing with life, and life multiplies itself when you add more beings to your life, the more life you get.

We all, whether dealing with our children, our jobs, our homes, or general daily life, need to be able to admit when it's hard.  The first step to being able to deal, for me, is to lay it out there.  Bring it out, say the words.

It's like I heard someone say in a sermon once.  Get a coin out, say maybe a quarter.  Hold it right over your eye.  I mean almost touching your eyelid.  Now tell me what the coin looks like.  Tell me the year it was minted, how many letters are on it, and maybe what words are there.

Can't do it, right?

Now hold the same coin out about a foot.  You can read it now.  You can see it, you can deal with it.  You can see that it's a quarter, nickel, etc.  You can see that the rest of the world is vastly huge in comparison.

Now that the problem isn't clouding your vision, you can see to deal with it.

Please don't feel guilty.  You love and care for your kids, or your one kid... and that's why it's hard.  It wouldn't be hard if you didn't care.

Keep going.  You're not the only one, I promise.  It wasn't that long ago I sat with the curtains closed, feeling like I must be the worst mother in the world for how I felt.

I'm not, I wasn't then.  You're not either.

Thanks be to God for you who finished this because it relates, and for you who know someone who needs you to listen unconditionally.

Wednesday, November 20, 2013

The Disney Debacle

Generally, I try to stay out of the media-fueled dispute part of the world and its workings.  But after reading ANOTHER article on the Disney Guest Assistance Pass debacle, having a trip planned for the spring, I let the frustration with the tone of these articles get the better of me.  So here you go.  But first, enjoy this awesome shot of Ryan, on his last day of being a one year old, at the Magic Kingdom.

The first time I heard that Disney was going to do away with its guest assistance passes, I panicked.  Honestly, I hoped and prayed that it was just a nasty rumor, and that our trip in the spring with the band wouldn't be completely ruined.  I wasn't just hoping though... I was angry.  Really angry.

Some folks took it upon themselves to cheat the system.  Whether it was to get their kids to the front of the line so they could ride more rides or on the end of making a quick buck from selling a black market pass, they cheated.  With no regard for the rest of the world, especially the people who need these things to enjoy the park, they cheated.  As a result, the guest assistance passes have been replaced by something I've read is similar to the FastPass system, which we would have used anyway.

The whole time I'm reading and panicking I'm thinking these parents are just like me.  Assuming that they're thankful that they can take their kids to Disney once.  That they weren't sure they could ever afford it, and have either saved and scrimped or have a husband with a job that takes him there.

Before I go on, it is unfair.  It is horribly unfair that people thought it was okay to take advantage of kids like Ryan and the passes that allow him to more easily enjoy the parks.  It's not right.  I'm still angry about that. From the way I've heard the old guest assistance thing worked, it would have made Disney WAY easier for us.  Or would it?

The more I read the latest article I saw on Facebook about it, I started noticing something.  Most of the people they quoted are people whose families go to Disney regularly... at least once a year, if not once or TWICE a month.

Wait, what?

That got me thinking about what I was really panicking about.  Please hear me... I'm not knocking those parents.   If I lived that close and could afford it, we might do the same thing.  And it's still unfair, and I'm sorry for those folks.  I get it.  One lady was talking about how the wait in line frustrated her child, who reacted to waiting much like Ryan will likely react.  The difference?  He's gone twice a month as a reward for goodness knows how long.  It's his routine.

There's the difference.  The old guest assistance program is not routine for Ryan.

I was looking at these articles, letting them color our family's ability and projecting what they say onto our even anticipating our trip this spring. I was panicking, seeing words like "impossible" and "miserable" and statements like "Where has the magic gone?"

I refuse to panic any longer.

Instead, I'll call Disney and see what we're really looking at in the way of assistance.  I'll forget that there used to be something else, because for our purposes, we're starting with a clean slate.  This kid went to Disney once, with a different band, for his second birthday.  He doesn't remember waiting in lines, or having to let mommy ride the Rock N' Rollercoaster then Daddy.  He likely doesn't remember waiting in the searing heat for the band to march around the corner at the Magic Kingdom.  He also likely doesn't remember riding the teacups or watching fireworks.

For our purposes, I'll be thankful that we never used a guest assistance pass, so that the difference won't be a factor.

I'll be thankful that we get to go.  To just be there.  Because the lines aren't the part that will pose a problem.

I'm not sure Ryan will get on a ride.  I'm not sure he'll want to.  We're talking about a kid who won't go to the top of the playplace at Burger King, y'all.  I'm concerned about not losing him.  About keeping him out of the lake at Epcot.  For him to enjoy the parks, we will have to throw out our expectation of what going to Disney should be like and go into this with an open mind and heart and find out what it's like for him.  No guest assistance program can do that for us.

He's not interested in meeting Mickey.  He may, like he did when he was two, enjoy the fountains more than the rides.  And that may be the magic for him!  And that is more than ok... it's as it should be.  His brother and sister would like to meet Mickey and Minnie, and Jake and Izzy, but they'll wait in line like they're supposed to.  Or they'll decide it's not that important and go do something else.  And if they don't get to do that one thing, it won't be the end of the world, or the trip.

I can guarantee a few things.

Ryan will melt down at some point every day.  Maybe a few times.

There will be people who stare, point, and make comments, making us feel like a freak show more than a regular ol' family.

There will be times I question my sanity at bringing us to such an environment.

But I can also guarantee that there will be people who are kind and helpful, who smile instead of glare, and who treat us like people instead of a freak show.

I can guarantee there will be times when the kids' delight at such an amazing place will bring tears of joy to their Mama and Daddy's eyes.

I can guarantee there will be times when I question why I worried.

The days at Disney will be a challenge.  I know this, because I know the challenge of going to the grocery store and the city park and the zoo and the children's museum.  But just like I don't call Walmart and complain because their line was too long and my child had a hard time waiting, and just like I don't call Target and insist that they change their Thomas display because it's too enticing and caused Ryan to melt down when it was time to leave, I won't... unless there's bodily harm or something horribly illegal... blast Disney for changing the guest assistance program.

Just like every other day, the world is an unfair and changing place.  If a corporation like Disney wants to make a place that's happier, cleaner, and more fun than the rest of the world, great.  If we want to attempt to enjoy it, great.  But make no mistake... my happiness, and my family's happiness even in a trip to Disney... is not up to Disney.

What happened is unfair, and it stinks.  Most unfair stuff does stink.  Since there's no escaping the unfair, why not defy it by finding happy anyway?

I know it'll be a challenge, and that's okay.  The thing is, just going to the store is a challenge.  There's nothing medically life-threatening about taking Ryan without the old system.  It's all about who he is and whether or not he'll enjoy it or hate it.  And that has more to do with my attitude than decisions made by a corporation.  Hard to swallow sometimes, but true.

Yes, I would have liked a shot at Disney with the old system.  But from where I sit, just the opportunity to go and walk around and soak it in is worthy of gratitude.

Thanks be to God for the opportunity to walk around in the "happiest place on earth" and for the gumption to give it a shot, whatever may happen.

Tuesday, November 19, 2013


"Oh it's enough to be on your way 
It's enough just to cover ground 
It's enough to be moving on..." 

~James Taylor, "Enough To Be On Your Way"

There's always a lot of thought revolving getting up and going in the morning.  What is there to be done?  What can I not forget?  What can I, if possible or need be, move to tomorrow?  Then there's the ever-essential prayer... 

Help me, Lord.  I can't do this by myself. 

Always, this is the prayer as I convince my eyes to open, my feet to swing around and arms to push me from the security of the blankets.  These days are a bit like rolling down the slope at my grandparents' old place.  Once you get started, it's on.  There's not much stopping. 

For my entire life, I've been an over-thinker.  You get the overspray here online.  If I'm not overthinking what I said, did, and how it could have caused someone else to feel five minutes ago, yesterday, last week, or ten years ago, I'm wondering if I'm making progress.  I wonder if what I do is enough.  Am I just walking through these days completely selfishly, accomplishing little to nothing in the grand scheme?  Am I making a good difference in the lives of my kids, my husband, my family as a whole?  Am I on the right track?  

We used to joke about the September freak out.  That time every year, since I was a kid, was my annual worry-fest over, now that I look back, just where I was in the path I thought I was supposed to be on.  As a kid, it was always about math.  I wish I was kidding.  I would be in tears the night before school started every year because I might not be able to do the math.  From then it went on to other worries, but to be honest I was always afraid I wouldn't be able to perform in whatever math class lay before me.  

In college, it was all about that little paper handbook the school of music gave me.  They used to give out a booklet that had all your course requirements and graduation requirements spelled out in a glorious checklist form.  Perfect for someone who dreams of being organized, together, and is a real task-master.  I'm proud to say that I completed all those requirements a semester (or some would say a year) early.  And NO, I did NOT come in with hours.  I came in with a clean slate and determination.  

Now, I'd say I'm a little too proud of that accomplishment. 

If I told the truth, I'd tell you that I lay on the floor of my friend's dorm room the night before my first jury and bawled my eyes out.  Juries, for those of you who aren't or didn't know music majors, are the final for your private lesson.  A performance of at least one prepared piece, and some scales, for the instrumental music faculty.  

I made an A on that jury, but I have to say I didn't believe I would.  I believed that I was not even close to good enough, and that they would surely take away my scholarship and kick me out of school.  

After that, the juries came every semester.  They didn't get much easier, but I at least didn't cry all night the night before.  The focus became my recital.  Every semester at the beginning and end, I'd pull out that white, plastic-bound booklet of the courses and requirements, taking a bit too much pleasure in every check-mark for a class completed.  And then I'd look at that one at the end... the half senior recital, preceded by a hearing to make sure you can play your stuff, and senior comprehensives, and piano proficiency... and I was the same kid crying over not being able to do the math.  

This is pretty much my thinking over my entire life, y'all.  Never good enough.  Gotta get that next accomplishment fix.  Surely, after getting this stuff all in a row I'll feel together.  

Guess what?  Never happened.  Yes, I graduated and got a great job, though not in that order.  And I loved my job.  But the accomplishment-addiction part just grew.  In my second job, I met my husband and got married. *check*

Then we had a baby.  *check*

Then we got pregnant with a sibling.  *check* 

Then the day after Christmas that year, we lost that sibling. 


Then Ryan quit hitting milestones. 


Then we started hearing that he'd need to be in preschool, not home with me as I'd planned.  


The checks became painfully out of reach.  

Over the next few years, I'd learn slowly and painfully that the checkmarks on the checklists were God in my mind and heart.  The realization that God is not going to send me down the tubes for not accomplishing the way I'd thought I was supposed to was, at first, very scary.  

The realization that I will let people down is still scary.  

But the thing that solves this?  The gospel of Christ.  

SO many people don't get it. I would have told you I did, I would have nodded in agreement ten years ago.  But I didn't.  I still thought I had to be good.  Be enough.  Be better.  Be on top.  Say the right things.  Be the right person.  Attend church, become a Sunday school teacher, work in VBS, send casseroles when they're needed.  Be at the business meeting, shake hands, smile, and amen.  

I didn't think the lack of these things would send me to hell.  I thought the lack of fitting the mold of the southern, country, predisposed cultural version of what equaled "Christian" would surely separate me from peace here and now.  And I was terrified of that separation.  

My dear son who has special needs unknowingly stripped away at the pretentious shell I'd become.  My formulaic version of Christianity yielded a shell, terrified of being cracked.  Autism took a hammer to it, revealing a crossroads.  

What am I doing?  What do I believe?  Do I stay involved in church and insist that my kids stay involved because I believe in it, or am I forcing my kids into a mold? 

Is there life-changing substance in what I'm doing? 

The answer was in several ongoing heart changes, which led to some outward changes.  The biggest change?  

Every morning, my request is the same.  "Lord, help me do this.  I can't do it without you."  But with an addition.  

"Help me realize the gospel to my bones.  Help me rest in it.  Help me put one foot in front of the other knowing that you love me, and have put teeth to that by seeking me.  By refusing to let me go with the grip of your own life.  Help me stop chasing enough, realizing you are the enough." 

It's not magic.  It's not a formula.  It's definitely not a "pray this prayer ten times and you won't have to worry about money" thing.  It's the knowing that, through Christ, I'm already enough.  It's looking back and seeing the things I was given... the completion of the checklists... until I was ready to see the truth.  It's in trying, doing my best with what is before me with the end result of being a good steward, not trying to impress God and those around me.  When I am stepping onto the tightrope of bettering myself, doing something new, or just dealing with the next day, I do so inspired by what's been done for me and with the safety net of the freedom that comes from knowing I'm loved.  Forgiven.  Carried.  And especially that he is, and always will be, the enough that I need. 

It's not just enough to be on your way.  It's enough to truly get to know who sent you.

Thanks be to God for his sovereignty. 

Monday, November 18, 2013


I've spent the morning on laundry, dinner for tonight, and cranberry sauce.  Maybe it's the stuffing in the crock pot, maybe it's the jars of canned cranberry sauce.  Not sure.  But I know I'm in the mood to share one of the things I hope I never forget to be thankful for.

As we drove along yesterday after our post-church burger, Ryan broke the semi-silence with a random but heartfelt proclamation.

"I love Ms. K!"

Ms. K is his CE helper.  CE is Christian Education... like your Sunday school, but awesomely Redeemer-fied.  

In a world where we can't seem to go a day without hearing of how some child was severely mistreated, our kids are all blessed with teachers, aids, helpers, nursery workers, etc. who love them and keep them safe.  Every Sunday morning, he's ready to go see Ms. K.  Every day, he's happy to see his teacher or whichever of the two aids comes to get him from the van.  

Yet another thing to be thankful for... they leave the room and come get him from the van.  

These ladies at school and church have taken time from their lives to invest in the lives of my children.  They do an incredible job of communicating with me on top of getting to know our kids, learning who they are and where they need help, and adjusting accordingly.  

So all of you therapists, teachers, aids (paraprofessionals, as some places call them), bus drivers, and volunteers who make our kids' lives better by truly loving them and caring for the best for them, I hope you hear this... our family thanks God for you.  

Every time he stims when he sees you coming, we thank God for you.  

Every time we hear his fussing from behind the door when we come to pick him up and know that he's safe with you, we thank God for you.  

Every time we get a note home letting us know what's going on in his day, we thank God for you.  

Every time we get a phone call that starts a conversation about Ryan, whether it's good news or your reaching out to solve an issue, we thank God for you. 

Every time he runs down the hall to get to CE, we thank God for you.  

Every single time we pick him up and know he's healthy and happy due to having been in your capable care, we thank God for you.  

Our family is thankful for those who pour out their lives for children, especially the ones who work with our kids on a daily or weekly basis.  

Thanks be to God for you.

Friday, November 15, 2013

These are the jokes, folks!

So I called Ryan's teacher the other day to tell her about a change in his transportation for the day, and she had this great story.  She was with him from the very beginning of his school experience.  He was three years old when he first walked into her room, with virtually no words or other communication skills other than screaming.  She was beside Eric and I making sure he got what he needed in those early ARD meetings, leading us as much as Ryan.

Honestly, if there is one, she's his other mother.

After a couple years... well, kindergarten and first grade... he's back in her Life Skills class in the school to which she was promoted (or just moved over).  She just had to tell me what he had done.

At the top of his homework, he was to write his name.  No big deal.  He knows how to write, even in different fonts of his choosing.  She looked across the half-moon table where they do their work, and saw this.

When she asked what that was that he wrote instead of his name, he did something awesome. 

He looked her right in the eye... this boy who had NO WORDS when they met, and sent her home crying the whole first semester as a three year old... and said, "Bad piggies!" and giggled.  

This kid who banged his head on the concrete and tile floor until they sent him home when he first went to school just joked with his teacher. 

The same kid who I had to pick up because he couldn't calm down and they were afraid he'd really hurt himself just looked his teacher in the eye and made her laugh. 

It's a simple thing, really.  But simple is relative.  When those things that we do without thinking about it become something to strive for, all of a sudden the inner workings are revealed, showing that there is nothing simple under the sun.  That the very things we just do, like look someone in the eye, smile, laugh at a joke, automatically say"hello" when someone says it to us are really supported by several systems working together, seamlessly, in the background.  

My kid joked with his teacher, y'all.  I was told that this would likely never happen.  

Thanks be to God!

Wednesday, November 13, 2013

The Follow Up

In yesterday's post, I told you about Richie's questions about school that sent me into an answering tizzy.  Today, we talk about the tizzy.  

What could it be that freezes my mouth when I start to utter the word "disability" in reference to my son?  Is it denial?  No way, man.  I ride the waves of Ryan's autism far too much to be in denial.

Fear of what others think?  Well, not as much in this instance.  This is all about his brother, who is one of, if not the, closest people in the world to him.  If anyone is his friend, it's Richie.  If Richie adores anyone, or has a hero who isn't his daddy, it's Ryan.  I'm not worried in the least of what people think of that.

I don't want to mess up.  In everything, every day of life I over think.  From what to wear to what to feed us for dinner to what I said to the cashier at the grocery store, I comb through and flip over every word, looking for meaning and hidden meaning, ways it could be perceived, ways it could have hurt someone.  And generally, I walk away from conversations panicking.

I know, so very sane of me.

But there is so much at stake, right?  So many people out there looking in, seeking to understand.  For that, I'm grateful.  There are also those of us looking for someone to understand.  Looking for it to get easier, looking for a kindred spirit who can at least validate our frustration, pain, exhaustion, and the myriad of other feelings surrounding what we autism parents do.

It doesn't take too long to find that there is someone... or a whole school of someones... who think the way you do things is terrible.  It also doesn't take long to find validation for what you think with the proper search engine and enough scrolling.

There are those out there who feel so strongly about their therapy, medication, techniques, doctors, therapists, or lack thereof that they are willing to take to the keyboard and spew, through posts or comments or whatever, exactly what they think.  Great!  This is good!  Say what you think!

Here's where I get frustrated.

Leave others' opposite choices out of it.  Period.  Find a camp or group home that's perfect for your child?  Able to keep your child at home with no problems? Find the best meds in the world that changed it all?  Choose to keep your child away from meds for the time being?  GREAT!  Rock that choice like there's no tomorrow.  Really.  Live in it, enjoy it, be thankful.  Be willing to share if and when someone asks, and if you feel like it's something you can do, tell your story on one of these free blog sites.

The point where I worry is not when we've stated our opinions, but rather when they're fiery darts aimed at someone else.

Finding a road in something as life-altering as having a child with a special need is hard enough.  Complicating it further with what to call said need?  It's a slap in the face.  Calling out parents who go ahead and reach out and say, "this is hard and I need help" is a knockout punch.  So is "well, get over it  because my life is harder."

No it doesn't help to wallow in and dwell on our problems.  But every now and again, each of us has a rough day.  And on that rough day, we need to be able to call it what it is.  Especially when there's not likely a foreseeable end to what we're dealing with.

To be able to call it what it is, we have to be able to step out and say something with a combination of knowing what it is to be vulnerable, and a trust of the other person to understand or at least trust that we're doing all we can.  Part of what froze me yesterday is that I've been reading about those who are on such opposite ends of what to call autism that I couldn't decide myself.

Here's what I've come up with.

Your autism may not be a disability in your eyes.  But if you're able to express that complaint, you have  an ability my child does not possess.  To go to great length to take away the labels, the descriptors, is to take away the services that keep my child safe.

I have two boys.  One has severe classic autism.  One is completely neurotypical and developmentally on par or ahead.  To take one and shove him into the other's environment for the sake of equality and not making either of them feel different would be damaging, maybe even to the point of injury or death.  I have to tell folks what Ryan has when I take him somewhere where he's expected to do things.  I have to be able to say words like "autism" and "developmental disability" without wincing.

I have to tell the truth.  The truth isn't fun at times.  But used with the correct intent, the correct heart behind it, the truth can be freeing.  It can give my kids and I and my husband the ability to do something we want to do, or at least make it easier.  The truth, used in love, gives me the tools I need to wisely make decisions and plan for tomorrow and the rest of today.

But the truth can also be used as a weapon.  It can be used to injure, to plow over, to exclude, and to oppress.

It's all in the way you truly intend.  It's in the relationship level you have with the person with whom you're speaking, it's in the heart behind the statement... the true heart, not the lip service, excuse kind of intent.

Remember... truth is good, but so is fire.  Used improperly, it can destroy more than you can rebuild.

Let's be nice out there.

Thanks be to God for these kids... and for truth.

Tuesday, November 12, 2013


This morning, after we took Ryan to school, Richie and I headed to his school.  As we waited in the van to stay warm, I realized that maybe this was a good time to ask the big question.

"Hey buddy... do you have any questions about brother, or about autism?"

I wasn't at all shocked by the answer, which was a solid no.  He didn't seem to have any questions, concerns, or problems with or about brother or autism.  Cool.  For about two minutes, I was beginning to pat myself on the back a bit.  Certainly we have prepared him well, explained things pretty well, and he must be pretty comfortable with the different we live with from day to day.

He crawled into my lap from the passenger seat, where he sat for our little visit, and we began chatting about his day.  Who this kid was, who he plays with, who is just a little too rambunctious for his taste, etc.  Then a girl walked up, and he mentioned her name, and that she is new to his school.  Being the pro-active, anti-bully, pro-acceptance mom I am, I mentioned that next year he'll be the new kid, too.

Oh yeah, kindergarten.  Cool.  And then it got interesting.

"Mom, after kindergarten what do I do?" 

"Well, you go to first grade." 

"Then after first grade I go to Ms. H's class, just like brother." 

"No, buddy.  You'll go to second, third, fourth, etc. then to college."

Ryan is in Life Skills.  He's not in a grade, he's in a self-contained classroom with only three peers.  His education is tailored to his needs, which is a fancy way of saying that at this time he is not able to function with his age-appropriate peers.  We did kindergarten with flying colors.  First grade, when more work starts and the curriculum drives the days more than play, colors, and sight words, it got to be too much.  Rather than forcing Ryan into the mold of the classroom, we chose to put him in a place where he would thrive.

The questions and explanations didn't stop there.

"Mom, was this my first school?" (gesturing at the small church preschool he's in two days a week)

"Yes, sweetie.  This was your first school." 

"So this was my brudder's first school?"

Oh my word, he doesn't know.  He doesn't realize at all.

"No, Ryan was in PPCD for three years." 

"Mama, what's PCP?"  (like I didn't see it coming...)

"PPCD stands for Preschool Program for Children with Disabilities." 

He stared at me.  Just stared back blankly, like I'd just spoken a foreign language.  What is this oddness?  Disabilities?  What?  

I wish I could say I came up with something smooth.  The truth is that I was stuck between wanting to tell him the truth and not wanting to overwhelm him any more than I already had.  So I shot for the middle with something about brother having autism, but that Richie does not have a disability, which means he's... well... honestly, at this point I froze.  I'm still in a bit of shock that we've talked about this so much and I've written so much and prayed and agonized over it, and he's still just brother.  

There are so many schools of thought on what to call it.  There seems to be so much in a name, in a descriptor, and it seems that this has to be chosen with the utmost of care.  After all, one could hear this descriptor and it could set the tone for that person's understanding or misunderstanding of this... uh... not sure what word to use here.  

So I told him that brother is different.  He's a blessing.  And I reminded him of the most important thing in life for believers... what Ryan brings me to and has taught me the very most about.  

Loving God and loving others.  Being kind and understanding and empathetic.  

And in the end, I'm still shocked... but mostly that my five year old continually teaches me what it means to accept brother the way he is... even as I'm telling him as much.  

Thanks be to God for the different terms to describe, the differentness that presents a need for them, and for the love that transcends everything.  And for the eyes of a little brother.

Wednesday, November 6, 2013

To My Tiny Dancer...

As I finished wriggling your ballet shoes onto your puffy three year old little girl feet, I asked that same question I've begun asking every week.

"Do you want mama to stay out here, or come watch you dance?"
And just like every other time I asked, you wanted me to watch. Since it's ok with your teacher, I perch of the same table prop thing I always land upon, and watch you plié, passé, and pique your little heart out.

Sometime I feel a little weird walking past all the other moms. They're all great I'm sure, and some hop up and check out their girls every now and again.

Here's the thing... I hope they don't think I'm trying to be the perfect mom, or hover over you. There is just this one thing I want to savor.

Okay, maybe a few more than one.

First there is the absolute obvious.  You are adorable!  You'll only be little for so long, and there may be a day when you prefer your old, socially awkward mama stay in the waiting room. I want to be here how you any me to be, at least this one hour of the week.

The rest of the reasons are more elusive.

To understand the rest of the reasons, you have to understand what life was like when biggest brother was tiny. To be able to appreciate why I sit in dance and savor your every move is to realize why one would appreciate having plenty of food after going hungry.

I'm grateful that you can.

I'm grateful that you run in the room, bubbling over with eagerness to dance with your peers.

I'm grateful that you can handle all the light, sound, color, and business of the room. That you can process it and not even notice.

I'm grateful that you adore your teacher and seek to please her.

I'm grateful that you play with the other girls. Even when you needs to be told to be quiet... which does happen.

I'm grateful for your ability to copy what your teacher does. For the flawless way your brain processes what you see and translates it into moving your limbs accordingly... mostly.

I'm grateful to see you excited about seeing these other girls.

But what is the big deal?  All little girls do these things.  All kids do some form of these things, right? 

Not necessarily.  

It is a different experience to witness these things because I've walked up to the classroom and realized that your brother was is in the corner by himself, and not because he was in trouble.

It's different because I had the teacher walk up to me and say, "I don't know what it is, but he doesn't seem interested in anything."

It's different because brother couldn't look me in the eye or answer to his name or call for me.

It is a special kind of refreshing to watch you be just one of the kids because I've had brother, who doesn't understand basics of social interaction.  

It's different because I've watched brother struggle when he can't handle the lights or the sound or the busyness of the environment, so he hits his ears and screams. 

It's different because, when he was your age and a bit younger, I heard lots of dream-shattering can'ts, likely won'ts, and probably will never's.  

It's different because we've... you included... helped him fight and slog through the fog for understanding and completion of the simplest of tasks and the achievement of the things most take for granted. 

Often I've hoped that I don't come across as rude or impolite for leaving the gaggle of moms in the waiting room to go sit by myself and watch you.  When it comes down to it, I just have to shut it all out.  I wouldn't miss taking you in as you flutter by during fairy walk time, giving me a wink and a thumbs up.  Or being there for you when you busted your lip as you ran back to wait for your next turn, only to have you wriggle down and run back as soon as you weren't bleeding.  And I bet your friends wonder why I'm wiping tears as I beam at you.  Maybe you wonder why, too.  

It's because I know what it's like to see the developmental skills it requires to do something as simple as a fairy walk completely absent in my precious child.  It's because when I see them in you, and I just want to explode with joy, relief, pride, and excitement. And because I never want to forget to be grateful for even the simplest thing.

To watch you brain process it all and not just function but ENJOY functioning is beyond delicious.  It's joyous, and for me, it's putting feet to my thankfulness in a way it's hard to explain. 

Oh, and before I forget... I love to watch you because I love you.

Thanks be to God for the gratitude than can only come from a vacuum. 

Tuesday, November 5, 2013

What You Can't See

Here's a news flash of the obvious... I love pictures.  I absolutely adore them!  And the more the better, the older the better.  If I'm in your house and you want to show me an hour slideshow of your grandparents and their parents, go for it!  Among my very favorite things to do is sit down with my great aunts and go through the oldest of the old family pictures.  The best part of those shots? 

The parts you can't see.  

Pictures are so cool because they're a visual representation of memories.  They're ebenezer stones, in a way, of moments we don't want to forget.  In some, the memory in question is pretty obvious.  In others, more explanation is needed.  There's almost always some back story, even if the picture looks obvious.  Take a look at these...

In the first, my daughter had smeared a stick of butter I had laid out to soften ALL OVER herself and the table.  Such a greasy mess!  There's really no back story there, other than the fact that she's proven to be the climber in the family. 

In this one, Ryan is stimming on the trains at the Mayborn Museum in Waco. 

Looks happy, right? Less than ten minutes later he was screaming.  The trains at the Mayborn are a great source of frustration for our family, because once he gets started with them, he can't stop.  Can't move on to other things.  It's better now, but it takes planning and a crow bar timer to get him to move from place to place.

The next one is pretty spot-on.  Richie was the ring bearer at my sister's wedding, and boy-oh-boy was he ever NOT into it.  Whoops.  He loves his uncle and my sister, but oh my word was he ever unhappy about that suit and the idea of standing still.  

This?  Just danged cute.  Self-portrait of Ryan.  The thing you can't see is that part of this is a red flag of autism.  I know, I know.  Your neurotypical kid likes photo booth too.  Gonna have to trust me on this one.  I love the selfies he takes! 

Richie and Daddy sharing pizza... ah, that was a day.  I was pregnant with Mae and sick as a dog, fever and all.  This was taken shortly after Richie nabbed the pizza his brother was supposed to eat from his place at the table.  I took this from the couch.

Maelynn's first trip to church, I think.  The time surrounding her birth is still foggy.  There are so many things about her birth and my experience surrounding it that I wish I could have a do-over for... but that wouldn't help.  Things happened the way they were orchestrated, but I still feel in a way like I failed her somehow.  Much of the fog is postpartum depression and anxiety.  In this shot, from behind the camera, I was just starting to feel a little better.  The meds were starting to kick in, and things were slowly getting better.  This shot is one of my desperate attempts to seem normal... to truly taste the amazingness of having this perfect little one and these great little boys and this wonderful husband... because to tell the truth I couldn't feel the wonderful. 

If you had just glanced at each of these, there was a part of the story you'd miss.  There was explanation needed.  And even though I gave you a little more information, even though these shots spark memories, good or bad... they still don't tell the WHOLE story.  

We're about to enter the time of family pictures, Christmas cards, Instagram shots of kids with matching outfits, perfectly posed... or the perfect shot of kids and parents being all cute and, like Clairee from Steel Magnolias said, like they were carved out of cream cheese.  

Let me share a little secret.  It's so obvious, but we all get so caught up in the fact that so and so looks so great that we forget. 

Those shots are just that.  SHOTS.  A moment in time, captured by a talented eye.  Yes, the outfits look great.  Yes, their kids are being happy and not screaming or hitting themselves or each other.  But hear me.  Take this to heart.  Let it sink in.  

THAT WAS A MOMENT.  You have no idea what is going on the very next second after that photo. Or what it took to get them there.  Or how tired they are.  Or how happy they are.  You have no idea.  

At one point, I had to start seeing these shots for what they are... blessings of someone sharing their family's sweet smiles.  No comparison needed.  No comparison necessary.  It's not fake to take these moments instead of the bad stuff, either.  It's not necessarily bad to share the bad or more frustrating of moments, either.  

So as we go into the holidays and beyond, try to remember that what you're seeing is the gift of a snapshot, to be taken at face value.  If more explanation is offered, great.  But no judging, no comparing, and if you're like me and the world will be lucky if you manage to cobble together snapshots from July's trip to convention for a card, or if said cards never make it past your house, NO GUILT.  

And when you see my shots, remember that they may be surrounded by crazy amounts of screaming, self injurious behavior, and all-around stress.  They may also be surrounded by giggles and laughter.  I can only guarantee you of this... they are all surrounded by life more abundant.  All that life entails, the full spectrum of inexpressable joy to unimaginable pain, more abundant.  

Just like yours. 

Thanks be to God for life more abundant. 

Friday, November 1, 2013

Mommy's a Chicken

You know what I was for Halloween?  While my daughter insisted that I should be a banana, I was just me.  Mommy, in the same earrings I've had since the eighth grade.  They're the most adorable dangly, grinning cartoon bats.  Guess that's why I've hung on to them so long.

As I sat there on the porch with my family, and in more conversations than one, I attempted to cover my embarrassment that I didn't take my kids trick-or-treating by saying I was going as a chicken.

This morning, I have a hangover from the heart behind that comment.

Halloween is another time when our life is way different than I thought.  To start, Richie is not interested in dressing up.  Maelynn would have been, but I couldn't justify the expense.  So I got her a pettiskirt she could wear with other things at other times, and got each of the kids a cutesy themed shirt for the day that would work for other times, too.

As usual, I bought candy for months before the event, making sure that the kids' generosity when they hand out candy wouldn't make for too much of a problem.  I got them little glow-in-the-dark toys to keep them occupied on the porch and to make the occasion a little more cool.  We moved lawn chairs to the front porch, and I made hobo plates (foil packets, perfect for outside) for the adults, and Daddy brought home kids meals from the local fast food conglomerate.

All evening, kids came into the yard with their parents, piling out of mini-vans, cars, the backs of trucks, and even lighted, decorated flatbed trailers pulled by tractors.  It was great!  We saw piles of Eric's and now students I've taught.  We had a wonderful time watching Richie and Maelynn cheerfully spout, "There ya go! Happy Halloween!" as they put candy in each bag and bucket.  After I called out "Be safe!" a few times, Maelynn took the cue and hollered out her safety warning in addition to "Have fun!" to most of the groups as they walked away.

It really was great fun.  I'm grateful that the kids have so far embraced being part of a backward Halloween.  They had the pleasure of pawing through the giant bowls of candy, sampling this and that, before we ever got our first customers.  Richie, who doesn't like candy at all, gave his sister his two treat bags from school, and she combined the two into one small bag that she's happy with.  Ryan had his "juicy red sucker" and was content to play with the iPad on the porch, wandering up to say random echolalic, repeated phrases from videos, complete with his trademark non-understanding of personal space.

He even tolerated Jackie, our carved pumpkin.  Yes, I named her Jackie Lantern.  The littles loved Jackie, and went down the steps to "visit" with her.  She also served the purpose of keeping Ryan on the porch, because he wouldn't walk past her.  Took me about an hour of calling Ryan back up closer to the house before that flash of genius.

The kids were great, Eric, Mother, and I had a great time visiting and watching them.  But I repeatedly broke my own rule all evening.  No one may have noticed, maybe they did.  I hope not.

While I knew in my head that what we were doing was the way we could safely truly enjoy this holiday in a way that we were still involved and seeing members of the community, I felt guilty.  I should be schlepping my kids up and down the street, taking advantage of the opportunity to teach Ryan especially the practice of knocking on doors, saying "trick or treat" and thank you.

But I'm afraid.

The fear of losing Ryan or seeing him run over by a vehicle is just too great.  He does it every time he steps off the bus in the afternoon.  He looks at those bus tires, stimming, and walks fast toward them.  I stick my arm in front of him, holding him safely beside me while he stims from a safe distance on the bus tires as they turn.

I also think the confusion of walking up to doors, knocking, getting something, and walking away would be meltdown-inducing.  I really don't think he'd enjoy it.  Add all that to the fact that Richie doesn't like candy at all, and the fact that they haven't asked to dress as anything ever, and there you go.

They seem to really enjoy our little candy-passing out tradition.  I like that it's an easy way to practice giving rather than getting.  And to tell the truth, that's half the reason we do it this way.  Okay, maybe a third of the reason, but still.  I can't stress enough, they love it.  They look forward to it, and to date haven't begged to dress as anything and go themselves.

All that said, it's only a matter of time till Maelynn or Richie decide they want to go with their friends, or that they want to give this a shot the way the other kids do.  When that time comes, they'll be given the chance to experience how most do things.

I just wish I hadn't felt guilty.  We gave our kids a great time, and who cares if we didn't do things the way everyone else does?  No one judged me, no one put to words any displeasure or expression of how different we are.  Nope, that was all from my perception of what we do.

I'm going to make a public promise to work on this.  My fears for our kids are real, not imagined.  We worked to plan and make a fun time for our kids in a way that would fit, and that's what we're supposed to do.  Like the parents hauling their kids around in cars instead of letting them run free, or the ones walking with their kids, or the ones in a large group in a truck or on a trailer, we've drawn our lines the way it makes sense for us.  Maybe we used a different color, or drew a different kind of line, but it's our line, and that's as it should be.

So I hope your hangover this morning is from candy and enjoyment, not the guilt of how you handled things last night.  I hope you're comfortable and not second-guessing like I am.  If you are, you're not alone, and I hope you can find the same comfort there that I do.

And no more joking that I'm a chicken.  What I did last night was brave... for me.  That's what counts, right?

Thanks be to God for fun family traditions, and for every friend and other community member who came knocking last night... emptying those bowls of candy is such a blessing.

And thanks for the courage to sit on the front porch.

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