Live from the Bathroom Floor

If you don't want a good, life sized picture of life with Autism in the bathroom, don't read this.  Pop on over to  Pinterest, maybe even close the lid and do something that doesn't involve a screen.

We're having another poop war.  All out, I'm not going and you can't make me, poop war.  It started last night. He never went.  We had to let him to go bed.  He couldn't take it any more and we couldn't either.

Today, we're back at it.  He completely messed his underwear, and to spare you the details, we know he needs to go.  He's done this before.  The question looming over this time is the reason.  Usually it's due to a change in routine.  I don't think there have been any.  I've tried to figure out a reason.  Believe me, I've had time to sit on the bathroom floor and think.

Why the bathroom floor, you ask?

The last time I let him sit on the potty when he was poop-warring, I found poop smeared on the walls.  A new low for us, personally.  I don't think that it's art to him, or necessarily fun... or maybe that's just my desperate attempt to make things okay.  I think it's more "eeew, this is on my fingers... oh look, a wall" and not an attempt at decoration.  But in yet another fit of normality, this morning when this started, I decided I'd be able to work around the corner while he did his thing.  Silly mommy.

So I sit here at the very tippy-tip of my rope, after several failed attempts at bribing my son to just please let it out already, let it out and you can have iPad, vSmile, blahblahblah... and I'd love to say it's all figured out.  But it's not.  I thought surely he'd go before his Daddy left for solo and ensemble contest this morning.  Nope.  I guess I figured typing was better than looking at the mess I have to clean up when he does finally go.  At least Maelynn's asleep and Richie's playing nicely.

When he did this the other night, the only thing that worked was telling him he had to go or he couldn't go to school. If he didn't go to school, he couldn't see B, his therapist after school.  He went.  But not before I completely broke down, tears spilling over and bribes coming through sobs.  I listened to Eric getting the littles ready for bed, the happy sounds of reading stories, and I was struck by the difference.  The difference finally crushed me.  Eventually he went, his daddy gave him a shower.  He even hugged me good night and said, "thank you, mommy."  Then I really lost it.

It's sensory.  It's all somewhere between his sensory-junkie nature and control, and I can't tell when it's coming.  He's been doing so great playing iPad, and now, apparently, he will have to back to small amounts of time, very supervised.  Meaning even less time to spend doing other things... anything... else, including housework, cooking, all the stuff mommies are "supposed to" do.

I'm furious, heartbroken, frustrated, miserable, confused, and exhausted.

I'm having a little bit of a hard time accepting that I'll now be cleaning poop off my walls.

I'm not happy that last night's time with Eric turned to begging and bribing.

I'm mad that today has turned into begging and bribing.

I'm sad that I can tie his shoes, I can help him dress, I can comb his hair, but I cannot make him eat or eliminate.  I can't help with that.  I'm tired of feeling helpless to help him.

I'm hurt for all the other kids and parents that go through this.

I'm tempted to snap and scream at the next person who says, "Oh, that's every kid.  He's just fine."

It's not every kid.

It's one in between 80 and 240, according to the CDC.

Mine is one of them.  Although I'm tempted to tell you to be thankful it's not yours, I won't.  That sounds too much like an insult to my son.  He's precious.  He's smart.  He's funny.  He's loving.  He's a beautiful little guy.  Yes, he has challenges, but he's as God made him.   And I wouldn't insult him or cut him down for the world.

Instead of telling you to be thankful that your child doesn't share Ryan's challenges, if I had to tell you something to be thankful for, I'd tell you the one thing that works for me.

And we know that for those who love God, all things work together for good for those who are called according to his purpose.  ~Romans 8:28

For I know the plans I have for you, says the Lord, plans to prosper and not to harm you, plans to give you a hope and a future.  ~Jeremiah 29:11

Let us hold fast the confession of our hope without wavering, for He who promised us is faithful. ~Hebrews 10:23

This is the truth.  Doesn't take away problems.  Doesn't act as a magic genie to give us what we want and give us all the answers.  And if I told you I smile and shout, "Thank you JESUS!" every time I find poop smeared on the walls, I'd be lying.  But these promises are what I hold onto.  The knowledge that everything works for the good, whether it looks good or not, and his plans for our family are to prosper us and not to harm us, and that he is faithful to keep those promises comforts me.  I'm not in charge, and that is often the only thing that makes this all doable.

Five hours later, the deed is done, the bathroom and the kid are both clean.  We lived through it.  But it's not over.  It's not the last time, and it's likely not the worst either.  He's now happily playing iPad, munching on cheerios with his sister.  I still am not sure how to avoid this, or if anything I do to avoid it will help.  All I know is that it didn't shock God off the throne, and that, in fact, I am not in charge, and boy, am I glad.

Thanks be to God, the maker of heaven and earth, and the calmer of my soul!

Just a Side of Normal... Thanks!

* disclaimer... for those who can't stand a bit o' poo in a story... literally, poo... then you might want to fast forward through the first paragraph or so. 

If you're a regular to this lil' corner of cyberspace, you know we are blessed to partake in Baylor University's Autism Resource Center, which provides ABA therapy for a minor fee.  We are big Baylor fans anyway, since Eric went there as an undergrad.  And well, it's only 50 or so minutes away.  Country livin' is pretty sweet, but it takes you away from cool stuff like therapy to a degree.  Moving on...

It's no surprise to you regulars also that we spend a lot of time hanging out on campus.  Richie, Maelynn and I stay and wait for our big brother to be finished.  In that hour we find cool stuff to do, or if it's raining or cold, I bring stuff for the kids to do in the hall.  Usually it's pretty quiet up there in the Draper building.  For some reason, last Wednesday, there were quite a few folks standing around.  

Ryan came bounding out of therapy, and I needed to talk to B, his therapist, for a minute about his session.  She's great at sharing how she got him to do things, stuff we can try with him, etc.  It's also just nice to talk to someone who totally gets it.  Totally.  The only problem is that Ryan is quite excited to get to ride the "little elevator" again... never mind that I have to carry his nearly seven year old self on it, with Richie on my front and the stroller in front of him.  So for some reason, this particular day, Ryan decided to run down the hall in the opposite direction of where we were, giggling the whole way.  After narrowly missing a group of professorial types, he starts drumming on the wall.  Then as I ask him to come back, he flops on the floor, starts beating his head and screaming his stimmy words.  Not the happy ones.  The "I don't want to do what you're saying" ones.  Or at least I think that's what it means.  

B, being the awesomeness she is, went to retrieve him.  Where was I?  Trying to keep Richie from running after Ryan.  He loves his brother, and everything brother does is cool.  Richie generally sticks to my side and behaves.  He's not perfect, but who is?  But when Ryan enters the picture, all is lost.  He is all about being just like brother, screaming and all.  He's beginning to understand that he's held to a bit different standard, but in the heat of the moment, his sweet three-year-old heart wants desperately to be like his brother.  Ah, adoration.  I love that he loves his brother.  Just not that he does what his brother does sometimes.  

Anyway, I had to let Richie go and help Ryan calm down.  Richie got up and walked around the stroller, where Maelynn was being nice and compliant, and climbed up to sit down in the chair beside me.  It was then than I looked down and saw it.  

No, it couldn't be.  

It was.  A little, brown rock.  And no, it wasn't earth.  

Automatically, "Oh, Richie... you didn't... " fell from my lips as I got up to check.  Sure enough, there was a nice little gaggle of the rocks on the other side of the stroller.  So what do you do?  No wipes.  I forgot.  I had to think of something.  If I left them, someone might step on them.  So while B kept Ryan and Maelynn, I picked up the poopy pebbles and shuttled them and their maker to the restroom.  After practically boiling my hands, I helped Richie on the potty.  Let's just say I nearly boiled my hands a couple of times before going back to Ryan.  

As Richie and I walked back to the other kids and B, I laughed and said "Dignity?  What's that?"  followed by "If you ever thought about eating anything off that floor... please reconsider."  

It really wasn't the worst thing that could ever happen to anyone.  It certainly isn't the worst poop accident ever.  And honestly, it's something that could happen to any mom!  I know I maybe should be a bit embarrassed at this incident.  Initially, I was.  Then I was just happy to have a kinda-normal, anyone would get it, regular mom story.  No worries about who would say... or be silently considering... that maybe we're just horrible parents who sit and yell at the kids from across the room.  Or that we give in to their every whim, and give them whatever they want at the first sign of fussing or tears.  Because we don't.  It was such a blessing to be able to tell a story about the kids, and embarrassing one at that, and to just be able to tell the part we wanted to tell without attempting to place Autism in a nutshell, in desperate realization that we can only explain the parts of OUR BRAND of Autism that we see... and that no, we don't always know what to do.  We are feeling through this too.  We get tired of explaining that no, he can't eat with the dishwasher running, and yes, if there is even one fly it will HAVE to be killed.  I have no idea why he hates Target, why flies, the washer and the dishwasher send him into shaking hysterics.  I cannot explain these things beyond telling you what we see, what we've tried, and how it's worked or failed miserably.  I cannot definitively tell you anything about Autism.  All I can tell you is what we see. The ways Ryan's life is so hard?  I can't even tell you all of those because he can't really tell me.  I can tell you, however, that from my perspective, it is excruciating to watch him suffer and to be powerless to do anything but hold him.  

But you know what?  

I don't have to explain to anyone who has kids why I had to pick up poop off the floor in a public place. Any parent totally gets that.  

So I'm a bit behind in sharing it, but last Wednesday and several times since, I've realized that I'm thankful for a normal embarrassing story.  

Thanks be to God for my kids, for the sheer amount of exquisite craziness that they bring, and the absolute rapture they inspire as well.  And thanks or you, for listening to yet. another. poop. story.  

Joy in the "Changes"...

It's been a long week.

Week before last, I was in Oklahoma helping my Mom with a bit of an emergency.  One of those life situations that creeps up and you need someone close to you to deal with.  So, being the gracious man he is, Eric hugged the two little kids and I and kept Ryan with him.  The things I needed to help my Mom with meant that Ryan, being himself, would have been in more danger with me than with his father at work.  Yes, he has such wonderful coworkers that this was no problem.  Blessed?  Oh, yes!  I was gone with the two littles working for almost a week.  Ryan did great with his Dad!  It was just the two of them, except when they were at work.  They had a great time being bachelors together.  Every day, though, he would say either "Mommy, where are you?" or "Mommy, come home."  Yeah.  That pretty much broke my heart.  You know my Mom really needed me if I left him.  If you know me you know that. And he was so happy to see us when we got back!

For about a day.

When back to school after Christmas hit, his usual resistance to change followed.

If you have a weak stomach, or just can't stand to read about potty-type things, this is your chance to duck out.  


You sure?  


Ok.  I warned you!


When Ryan is nervous about change, he refuses to poop.  Refuses.  His record for holding it is about four days.  After a stool softener dissolved in hot chocolate (chocolate coffee to him) and much praise and cheerleading, he pretty much passed a small orange.  Then he was back to normal.  And that was just after we got back from Christmas.  Then we were home together for the second week of Christmas vacation, then I was gone for a week.  We were right, though... he did do great in his element, here at home with his Daddy all to himself.  Then when I got back and he started school, the start to school prompted excitement and anxiety that comes with a new semester, and we were right back where we started.

The first day back at school, I was home hacking away at the laundry beast, when we get the call.  He's messed his pants, needs a change.  Ok, no biggie.  It was the first day back with all of us at work, and I looked like it was laundry day.  Eric came home, grabbed some clean underwear and wipes and took care of the big guy at school on his lunch hour (yes, I am married to a prince, thank you for noticing).  Not even two hours later, the school nurse called.

Ryan was in her office, very upset, having great difficulty.  Shaking.  They thought he might be sick.  I plucked the sleeping 3 year old and almost 2 year old out of their beds and went to school in a pre-weight-loss college sweatshirt, awful sweatpants, with a bandanna over my so not washed hair.  Oh, and shoes that didn't match a thing that I was wearing.  Any other kids would have been like "aww, mom!  You're embarrasing me!" My Ryan was so relieved to see his mommy that he actually answered a question for me.  For real.  So I cleaned him up, and immediately realized that, in my haste to get to my boy, I hadn't brought clothes.  No clean underwear, no pants.  Yeah, I felt pretty dumb.  Thankfully the nurse had extra of everything I needed, because obviously Ryan was not thrilled at not having pants on.  The whole time, the aid that helps him in music and PE sat with Richie and Maelynn so I could help Ryan.  On the way home, Ryan asked if he could have iPad.

Not until you poop, dude. I'm sorry.

Soon as we walked in the door, he barreled to the potty and I heard his sweet "You did it!  Excellent!" from the bathroom.  I bet Steve Jobs had no idea his device would be used in such a way.  Or maybe he did.  Either way, I'm grateful for the leverage his invention brings.

But that was just the beginning.  Every night and afternoon for a week this has gone on.  Screaming, yelling, bargaining, pleading.  Begging.  Encouraging.  It wears on all of us like you wouldn't believe, but most of all Ryan.  Last night he finally did his thing without making a mess, and got iPad immediately as a reward.

I cannot express explicitly enough that in this Ryan is not just trying to "play" us or drive us crazy.  This behavior is a result of not knowing what to do with the anxiety that comes with change.  The problem is that this particular behavior will cause him harm if we can't find a way to curb it.  This leaves Eric and I wishing there was someplace close where we could go and have people get it without having to explain for an hour.  Partially because we can't explain it fully.  We grasp blindly, desperately at something that will give him some relief from this vicious cycle, but the best we can do is just get him to go.  Excrement as currency for playing iPad or VSmile seems to be the only thing these days.

This is another one of those ways I am in disbelief of the hold Autism has on these kids, their parents, their families.  Most times when we leave Ryan with a sitter other than his grandparents he does this same thing.  We come home to find him completely crashed and burning.  Crying, shaking, not sure how to express anything other than to mess his pants.  The guilt that comes from knowing this will likely happen is too much, so we just don't.  Our marriage is strong and becoming stronger as we face these things every day, together.  If we believed that we had to have a date every week/month to keep our marriage alive, which we have in the past, the guilt would turn this plan against us.

Others' expectations... and at times, even ours... must be thrown out the window so often.  Did I expect to have a six-year-old with diaper rash?  Nope.  But it's what we have.  Thing is, I also didn't expect to have a son who, at his tender age, is already learning drum set patterns.  Things that we took for granted go out the door, but others come flying in that are even more amazing in their place.  Sometimes we have to look for them.  Too often we need each other to point them out.  We don't have it all together.  We're not even close.  But we do have each other, three great kids, great parents, a fabulous extended family, and the love of Christ.

There are times when I'm not sure how we're going to keep doing this.  Take Saturday.  Eric was out with work, and I was here from 7:30 AM to past bedtime with all three kids.  Richie wasn't feeling well with snotty issues, and Ryan was having his potty issues, but we got to have our dear best friends over.  Well, sort of... the husbands were at work in the same place, and the ladies and kids met at my house.  You know, the kind who are truly family... who know that you don't know what's coming next, but they're ready to roll with you no matter what it is or how bad it smells, and without judgement or trying to tell you how much better they could have done it.   After they left, just as I got the kids through the bath, got Ryan through another poo battle, I walked into the living room just in time for Richie to hurl... copiously... all over the couch and the floor.  He did this four more times within thirty minutes.  Eric got home just in time to change out of his sport coat and into sweats before Richie got him too.

We are told as believers that God wants us to live joyful lives.  Does joy mean happy?  Sure sounds a lot like it.  But happy with puke all over me, after just being hard-core screamed at while I cleaned up poop?  Happy, with my child so scared, anxious, frustrated and just rocked to his core that he's hitting himself in the head and slapping his ears?  Hmm.  After a search, I only see where "happy" is used in the bible 8 times.  In those eight times, the majority are referring to a circumstantial feeling.  That a man may be happy on his honeymoon with his new wife, that there may be happiness in celebration, that kind of thing.  But the word "joy" is used 203 times in the ESV, according to biblegateway.com.  One of the things that frustrates me the most until recently is that "happy" doesn't seem to always find me when I'm here with the doors shut.  How is it possible to be happy when you're cleaning everyone's bodily function in the house with the grateful exception of your husband?  Well, maybe it's not.

And hold on... maybe that's okay.

Yes, unhappiness happens.  It always will.  It rears its ugly head, causing frustration and anger and just general discontent.  But when those wheels fly off... and they will... we are to stop and ask for help.  Ask for the endurance.  For the calm.  For the gentleness to return.  Ask for it, and work toward it, and John 16:24 tells us that we will receive what we need.  Why?

"Until now you have asked nothing in my name.  Ask, and you will receive, that your joy may be full."

That our joy may be full.  Not that we may be perky-skippy-happy all the time, but that our joy... the deep-end of happiness that comes with peace and contentment... may be FULL.  That as we keep pedaling in our lives,  we will be able to come back to content.  Once that joy is in place, once we've practiced seeking and asking for that joy, it's easier to climb up from the lows.  Joy in who we are in Christ is the lighthouse that keeps Eric and I coming back together after losing patience with each other.  It's what allows us to let go and ask each other, and many times our kids, for forgiveness.  It allows us to start over a thousand times a day if we need to.

And I do.  And it's there every time. Forgiveness from God, my husband, my kids.  Circumstances still apply, but the peace returns and the smile soon follows.  Hang in there, friend.  Ask for help.  Seek it.  Those around you don't have it all together either.  They may say they do, but they don't.  I promise.  As together as they may seem, as they want you to think they are, as happy as they may truly be at that moment, we all have issues.  Hangups.  Imperfections.  We all do.  But no matter what your challenges, there is hope.  There is forgiveness.  There is a reason to keep pedaling.

"You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore."
Psalm 16:10-11


Thanks be to God!