Thursday, March 29, 2012


Yesterday was a pretty great day.  If you know us, you know that Wednesday is about the busiest day we have all week.  Between our bible study here in town, therapy in Waco, and the kids' participation in AWANA's here in town it gets exciting.  It's also the day I get to have my favorite high school kid over, and we cook dinner together and just generally act silly.  It's lovely.

At therapy, we've been working on trying new foods.  It's been our hardest objective to meet, and I still wouldn't say we've completely trained him to try new foods.  ABA therapy has done a ton for us, and this is the one thing I've been wondering if we should just give up on and try another objective.  But I know, too, that if we drop this now it might make the problem worse.  You know I don't want that!

The whole way to Waco, Ryan randomly says "Going to see Ms. B to chew and swallow."  All on his own.  He knows what he's practicing, and although he loves Ms. B, I do believe he's sick of this objective. Good thing he loves her!  Anyway, yesterday I heard a lot of random squealing.  Didn't sound like him.  Turns out he FINALLY chewed and swallowed, and with NO screaming, kicking, hitting, or any kind of undesirable behavior!  Oh, there was much rejoicing!!!  She asked him to chew so many times, then even before she could ask him to swallow, he said "You did it!" and upon a wide-mouthed check, his success was confirmed.

We high-fived and celebrated like crazy.

Then the evening passed like it normally does, and as I waited to get my Richie from Cubbies, one of the leaders asked if he was going to be in preschool next year.  We'd already decided against public preschool due to the fact that I had to send Ryan when he was three.  Richie and Maelynn aren't going to public school until kindergarten.  They receive socialization, we read to them, we count with them, we do all kinds of things with them that will help them academically.  We want them to be home and have that extra year to become comfortable with who they... who WE are as a family... before they spend a full day at school.  And you know what?  I like having them here, people.  There ya go.

That said, I had completely forgotten about putting him on the preschool waiting list at the same church in town where he has AWANA's.  That one, two days a week, half a day, yeah.  We can do that.  Totally.  You know what else she said?  She said she thinks he'd be great at school.  She said he was at the top of the list and the list is long.  So I practically ran home to tell Eric, and we decided quickly that yes, he can go to preschool. Eric was so cute... he congratulated Richie on his college acceptance letter.  Love that man!

But you know what makes me worry about all that?  Not the preschool.  It's run by good people.  It'll be good for him and good for me to get some time with just my Maelynn every week.

I worry because I completely forgot.

I forgot he was on the waiting list.  Heck, I forgot about the preschool.  I hadn't even thought about it in months.  We're so busy worrying about Ryan and his behaviors, teachers, therapies, appointments for this and that, that I completely forgot.

That cute little boy who bops around throwing "sic 'em bears!" at the college kids while he waits on his brother... that sweet boy who slept on my lap while his brother succeeded in therapy because he was just plain exhausted... the sweet boy who says "Bye pal Ryan!" every day when we drop him at school, that precious, curly headed boy who, upon being reminded by me that daddy loves him, turned it right back and said, "he loves you too, mommy!" as Eric left for work this morning... yeah, him.  I forgot about a little chunk of his future.

Sometimes feelings are just feelings, and sometimes they're smoke.  Where there's smoke, there's fire.  Where there's a fire, it needs tending or putting out.

Thanks be to God for helping me smell the smoke for this fire.  My littles need my attention, too.

Tuesday, March 27, 2012

Skinned Knees

This morning was a wee bit of a circus... okay, a little more than usual is all.  We took Ryan to school after a bit of a rough start.  Sometimes he just won't start eating his breakfast until the very last minute, and it has nothing to do with how much time he had to eat breakfast, what time he got up, etc.  Sometimes I think he's just being a little rebellious in his own Ryan-way.  Anyway, we finally got him off to school with a little more than usual amount of trying to stim on the van wheels as I drove away.  The lady who helps him literally had to grab him, I slammed on the brakes.  Joy.

Once Ryan was off, due to a nasty squeal when the air conditioner in the van runs, I dropped it by the mechanic.  Yes, a real mechanic.  They exist!  Then, due to some combination of my age and the checkup I had last Friday, I had to go have a bit o' lab work done at the clinic, thankfully down the street.  So we had some nice walk time, me and the littles.  We strolled home after I fed the vampires, talking about this cat and that bird, and Richie was thrilled to get to walk across the railroad tracks.  WHEEE!  We were having a lovely time when I heard a whump.  I turned and sure enough, Richie was face-down on the asphalt.  He was pretty upset, so I picked him up and snuggled him, and once he was cool again, put him on my shoulders and we continued home.

At home, I looked down after the mass-chaos that is letting the dogs out and saw a red drip all the way down Richie's shin.  Ah, the scrape.  Time to be doctor mommy.

Now let me make it perfectly clear that this kid was perfectly calm, running around the house, having a great time laughing while Jedi backed across the kitchen floor to the door.  No biggie.  But as soon as I mentioned the skinned knee, you'd have thought I threatened his life.  Got out the Snoopy bandaids (nothing else will do for a Richie-roo) and the knock-off Neosporin.  Got a cool, damp paper towel and began to gently clean his boo-boo.  He freaked out at the paper towel.  Fa-reaked.  Gradually, he realized that it wasn't so bad... hey, maybe it even felt good.  Then I got out the antibiotic stuff and he went half-ballistic.  "I don't like it!" he cried.  Then the bandaid, even with his beloved Snoopy's likeness, was the ultimate insult.  He acted like his leg wouldn't work, people!  He cried, complained, and generally displayed his unhappiness... and even turned a little pale!  Over a bandaid!!!

As I attempted to calm him, still kinda reeling from the shock that a bandaid was such a big deal, it hit me how much he's his mother's son.  All my life, certainly not just about autism and behaviors and the uncertainty that accompanies it, change has been my nemesis.  Control has been change's best friend, seeing as they conspire to drive me stark-raving bazonkers.  And I fall for it every blasted time.

Yes, I generally recover or I would be unable to be positive about anything.  But there's that time where I'm somewhere between hollering "FOR REAL?!" and shaking my fist at nothing in particular.  Or at what I think the aggressor is.  Or the situation.  Whatever.  Generally, and often only after panning everything through the sieve that is this blog, it all ties back to remembering who's in control.  But at every turn, the thing before it what I want back.  What I had was comfortable, easy, familiar.  Nevermind that I'd outgrown it and it was pinching my feet as I walked through this life.  It might not even have been easy, but it was what I knew.

Every time, once I get past the initial for-real ness of the whole thing, and sometimes it takes a long time, I come back around to remembering good ol' 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." 

After a while God brings me around to remembering that all this stuff... all the suffering of life, the frustrations, the tears, the anguish, the despair, the uncertainty... will someday be as that little skinned knee.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 
~2 Corinthians 4:16-18 ESV

And on the flipside, it helps to remember that Richie's freaking out and inability to see past the indignity of the cool paper towel, then the medicine, then the bandaid, I do the same thing and act the same way when things crop up in life that I don't think I should have to deal with.  I tend to act just the same way, although in a little more grown up terms.  I ought to deal with Richie and his brother and sister in the same way I want to be dealt with.  

Thanks be to God for his patience and kindness, and for dealing with all my skinned knees.

Monday, March 26, 2012

Odd Similarities

We had a really, really good weekend.

No, really!

We got to go see some of our favorite people this weekend in Fairfield, then got to hang out at the park with our community group at the park.  Doesn't that sound fun?!  The kids ran around and played in bubbles, got dirty, and had a glorious time while Mommy and Daddy had a glorious time visiting with our best friends and their families.  After the kids had run around, giggling, having a great time all day, we put the kids in the van to head home, drying the "but I want to stay here" tears.  Sunday, we had a wonderful time too.  Same kind of thing... kids running around, making messes, generally having a great time.  Both days were beautiful.  Perfect weather for this kind of thing.  One of those times that definitely looks like you'd choose them for a highlight reel of your life.

There were similarities of those days in great supply... lots of sun, good friends, laughs, and great times.  Lots of encouragement, too.  Both days, at least one person described Ryan as a sweet kid.  Oh, how wonderful to hear someone else think so too!  But there were much less gratifying similarities in the days, too.  They were actually quite striking, even gut-wrenching, heart-sinking occurrences...

Under the surface of Saturday, we received a phone call that one of Eric's colleagues, a well-loved and endeared teacher, passed away in a motorcycle accident that afternoon, leaving three kids from elementary to high school age.

Under the surface of Sunday, among baseballs flying about and the munching of sandwiches and chips, the swilling of cool water, the scent of sunscreen lurked another loss.  One that was deep and fresh, and the very act of being at the park was brought about by it.

Under the surface of our family, however, there was a silent celebration.  Certainly not of the losses of our dear friends, but of the courage to be there.  The courage to show up, hang out, and let our kids play out in the open.  Sounds silly, I know. But we have to watch so closely, and are at times so misunderstood, even called things like paranoid, because we have to be able to see especially Ryan at all times.  Even little Richie can tell someone his mom and dad are over there, or his name's Richie, or he lives in Groesbeck.  Ya just gotta watch him.  I've had so many nightmares of losing him like so many other autistic kids have been lost, wandering because they heard or knew of a body of water, or just to wander, or like Ryan, wanted to stim on car wheels while they turned.  At all times, completely oblivious to danger.  Remember, Ryan's the kid who stims on the van wheels when I drop him off at school to the point where someone has to be there to lead him to the door.

Yes, folks... it's taken a lot of practice... a lot of just making ourselves do it, but we're finally getting to the point where we do what we do, how we need to do it.  There was a time when we just didn't have the emotional and mental energy to tackle an outing like this, and I can't say that we always do now.  But we are ever-increasingly grateful for friends, family, and friends who might as well be family, who exhibit understanding of our concerns, don't judge when we do something a bit (or a lot) different than they would.  That makes it easier.  Tons easier.

We hurt with those who hurt, we mourn with those who mourn... we pray for comfort, peace, and rest for the families and for the kids at school here, for the children who no longer have Mommy at home.  We'll be there to chip in, do our part, as community and brothers and sisters, not out of duty at all, but out of a heart overflowing with gratitude for the way God sent us all to minister to each other.  Because by even something as simple as sitting at a picnic table, talking with us and letting your kids play with ours,  you've ministered to our exhausted, weary hearts more than you ever know, friends.

Thanks be to God for people who wrap their arms around your heart... and for the ability and courage to attempt to do the same in return.

Friday, March 23, 2012

Decisions, decisions

The other day, it rained like crazy for a couple of days.  Here in central Texas, when it rains like that, things get boggy.  And we're not quite used to boggy.  We're sure used to hot, and we're used to sunny.  This ain't Seattle, folks.  Every afternoon, we're used to the same thing.  Backpack, bathroom, outside, iPad. Over and over, I'll say it on the way home so that Ryan knows what's coming.  And if he doesn't get to do one of those things, I change it up and emphasize the change in hopes that I'm averting a crisis.  

Tuesday it was finally through raining, and I decided to get out the kids' mud boots and let them kinda splash around in the backyard.  I pictured splashing in puddles, possibly we pants and knees.  I pictured the kids going about their usual backyard play as they enjoyed the wetness but appreciated the dryness of their feet.  And I must confess that I fully expected them to be the most grateful three kids you've ever seen.  "Oh mom, you're so fun!  Thank you for giving us this opportunity, mother.  Now here are our wet boots.  We're going to go inside and play in our still mostly dry clothes." 

Um, no.  

It was full-on mud wrestling.  Thank God I was smart enough to change them into clothes it was more okay to get yucky.  They had a blast, but were stripped outside and shoved straight into the shower as soon as we got in the house.  I think I rescued the clothes, pretty much.  And while I wouldn't call it a mistake, I would definitely say that it might not have been the most shining example of my decision making skills.  The did have a blast, and Mr. Sensory seeker absolutely loved sitting (yes, sitting) in the mud, squishing it between his fingers.  

So I didn't quite blow it, but it might not have been the best idea ever.  And it sure didn't go the way I thought it would. 

In the six (almost seven, holy cow) short years of Ryan's life, we've been faced with countless decisions. Each one seems monumental.  Each one, in its own way, IS monumental.  We do our best to make the decisions about therapies, techniques, even day to day decisions about how to handle a trip to the store, but there are times when it seems like we're forced to grope in the dark, eyes closed, bracing for the impact.  There are times when that's just the best we can do.  Brace for impact.  We're not even sure what questions to ask.  One person, doctor, or other professional will think one thing is horrible, while another praises and hails it as the best thing since sliced bread... or maybe even fire.  The first big decision we had to make that we didn't see coming was to have surgery for glaucoma, to widen Ryan's tear ducts so his eyes could drain.  We were told that without the surgery he'd go blind.  Period.  Easy, right?  Sign us up.  Surgery it is.  Not to say it wasn't scary, but at least there was a clear answer.  At least there was a clear question, a definite, defined, tangible problem. 

Then the behaviors cropped up, and the decisions became more nebulous... and even the questions seemed to hide from us.  One of the first and hardest to accept was to send Ryan to school at barely three years of age.  He turned three on May 30, Richie was born three days later, and the next week I pushed little Richie in the stroller with my post-op gait to see Ryan into his first day of ESY (extended school year).  Not the first day of school I imagined.  Not nearly even close.  But we were grateful for the opportunity, and have been since.  This little guy, as tiny as he was, started school.  

Little bitty Ryan on his first day of ESY... isn't he precious?

We remained in PPCD (preschool program for children with disabilities) for three years, and then went to kindergarten with much fear on Mama's part.  He has done so well, and we are so proud of him!  And now it's time to start thinking about first grade.  Oh gee.  First grade.  I must say we're thankful to be in the district we're in, because acceptance of kids like Ryan is pretty easy to come by so far.  But how do you pick a teacher?  Someone asked me the other day if I'd thought about it, and my answer shocked her a bit.  I know we have great first grade teachers, and we certainly don't have any bad ones.  So my first response was, "well, I want someone to have him who WANTS him."  Because really, whoever is his teacher will see him a lot, and if he or she wants to have him, make him fit, challenge him, include him, get to know him, and love him, they will.  There will be the guidance, in our district, to do that.  To learn.  And we'll be involved, so that's not a problem.  

But what if no one raises their hand?  What if we have to pick someone based on what we hear, what the other teachers say, etc.?  I told Eric the other day that I feel like we almost need an interview process.  And we can't afford to get our feelings in the way.  This has to be an intellectual decision in so many ways, and it seems like another one of those scary decisions.  

So we'll do our homework.  We'll listen, we'll share, we'll keep the concerns and needs out on the table and in the open.  Really, there are bigger decisions looming on the horizon, because honestly, I still don't feel like we do enough for him.  My greatest fear in this is that we'll miss something major, or make the wrong decision, or that we'll get to the end of the road and see that if we'd just done this one thing, everything would have been okay.  

So as we do our homework, as we seek wisdom, as we decide on this and so many other things, we'll pray that God will reveal what we need to do, that He will guide us and lead Ryan and keep him.  We'll keep praying for all of our kids, that they'll become the people He made them to be, and that we'll be the parents we need to be.  We'll keep asking that the Lord reach through the noise and guide us to the right things, because this process, even the everyday decision making, is often cloudy and noisy.  

Richie loving on his hero.

Thanks be to God for his guidance, his providence, and oh my word, for our sweet children.  

Hello Lord, it's me your child. I have a few things on my mind. Right now I'm faced with big decisions, and I'm wondering if you have a minute. . Chorus: Right now I don't hear so well and I was wondering if you could speak up. I know that you tore the veil so I could sit with you in person and hear what you're saying, but right now, I just can't hear you. . I don't doubt your sovereignty, I doubt my own ability to hear what you're saying and to do the right thing, and I desperately want to do the right thing. . Chorus . Somewhere in the back of my mind I think you are telling me to wait, and though patience has never been mine, Lord I will wait to hear from you. 

~by Sara Groves

Wednesday, March 21, 2012


“If I could snap my fingers and be nonautistic, I would not. 
Autism is part of what I am.”
- Temple Grandin

More and more, we're being hit with questions about autism.  These inquiries are well-meaning, and certainly welcome from those who really want to know.  But I fear that, just like when I'm at the drive thru and the person asks for my order, I kinda freeze when I hear that black hole of a question.  I want to represent my son well.  I want to represent our family, our life, and the community well.  And I certainly want to make sure that the inquirer catches above all that Ryan is a blessing, and that he is RYAN.  He is as the Lord made him, whatever labels he wears.  

Turns out that stuff in even ten minutes to answer is like shoving Niagara Falls through a drinking straw.  No, one of those little coffee stir-stick straws.  

So, what do you say?  

Since I can't possibly talk better than I write no matter how I wish I could, here you go.  

What is autism parenting, you ask? 

It's a set of traps and cause-effect relationships that you navigate blindfolded and ears plugged.  Once in a while, someone comes along and pops that ear plug out and speaks something that makes sense, then you go back to silence, except for the screaming when you hit the wrong "cause".  

It's learning to be comfortable walking on eggshells... and with the breaking and pain that occurs.  

It's seeing your younger kids... three and two... already absorbing their brother's differences and helping him, and praying that when they notice that everyone else's big brother doesn't act like him, they'll fell blessed to have him as their brother, not jealous of those with neurotypical big brothers.  

It's realizing that the best you can do is search for the right questions.  Answers?  Well, they're few and far between.  

It's realizing that there is no real resident authority on autism.  You are an expert on your child, and really, that's it.  I can't explain another child, or another person on the spectrum.  There may be similarities, but they are so diverse it's ridiculous to even try.  

It's realizing that people aren't going to get it.  And conversely that I don't get them.  So if I don't have anything clearly nice and pat-on-the-backish to say about someone else's situation, I don't say it.  

It's learning to smile and nod, to gently educate others when you have an opening, and learning when others are just not that into it.  Not everyone... and I'd say not many people at all... truly want to know what's beyond the surface in our family.    

I've learned that it's okay for people to not want to know everything about stuff that goes on.  

It's learning that it's okay to have boundaries, even boundaries that others may see and think you're nuts.  

It's taught me that I was incrementally more concerned with what others thought than I ever knew.  

It's taught me that I have to change that.  

I'm learning that it's okay to decide where you sit in every debate there is on autism and what causes it... and I'm learning that the more I learn, the less I know.  

I'm learning that it's okay to love Ryan as he is, and not want him to be just like everyone else.  

I've learned that the balance between treating and helping the behaviors and letting him be himself is tricky at best.  He is a great person, and God made him to be Ryan, not Richie, not Maelynn, not me, not his Daddy.  

I've learned that the best way to help him is to listen to and learn HIM.  Not necessarily everyone else who has an educated opinion (we're talking the people who study this for real, not joe blo down the road who saw Rain Man, had a kid in his so and so group who had autism, or knew someone who knew someone) is correct.  They may be correct for fifty other kids but not Ryan.  

I've learned that there are a lot of "Joe Blo's with an opinion" in the world.  And a lot of them are really good people who I don't want to burn bridges with.  

I've learned that when I run across someone who wants to learn about us, I should do my dead-level best to help them learn.  They are a gift to us.  

I've found that, although I've rolled my eyes at the thought of online friends in the past, they have become a great source of understanding, and the internet and Facebook have become channels to get to know family I've never met.  It's an amazing pipeline of encouragement and information sharing for we autism parents, and thank God for it! 

I've found that there are tons of similarities with typical parenting, though many of them are magnified like crazy.  One of these that is totally similar?  Not ever enough time in the day.  

Which is where I am.  So for today, I'm through shoving the falls through a straw... but I'll be back soon.  Because there isn't a cure, there isn't a fix... these are our kids, they are who they are.  And I've learned, above all, to celebrate who they are.  Because if I focused on the "a" word too much, I'd miss them, and missing them would be the ultimate tragedy!

Thanks be to God for all these lessons we continue to learn!

It's my sweet husband's birthday today... my partner in all this blessing of a mess... and if I'm going to have everything together for him, I have to get scootin'.  He knows all these things as I do, and I know he can add more that I don't see.  So thankful for you, dear.  I love you so very much, and am tahnkful and comforted that you are sharing this journey with me.  

Tuesday, March 13, 2012

Something is getting through

Sunday, our boy blew us away.

First, you have to understand that, in our church, we love liturgy.  No really.  If you haven't given those beautiful words a thought or have dismissed them as cold and unfeeling and shallow, you really ought to reconsider.  Anyway, there are times when we say certain things.  Most are printed in the bulletin, but some things you get used to and know they're coming.

We feel very strongly that Ryan hears and takes in way more than he can put out in a way we can understand.  That's why we want him with his age group in every way he can be.  He is learning to participate in CE on Sunday mornings quite nicely.  The biggest issue he has there is the transition to the worship service from CE.  That's when we hold our breath, take his hand, get a drink at both fountains, dart through the crowded passages (GOOD TROUBLE, crowded hallways at church), and into worship to take our back-row seats.  That's when we have to set the precedent that we sit, we sit in the chair and not on the floor, and it's time to chill.

Even in a loving, encouraging, accepting setting it's interesting to sit through church with Ryan.  The whole time, he tends to chatter in his Ryan-stimmy-language, usually at a low level.  Often he'll start saying the days of the week, months of the year, or just announce the date (or a random date) loudly.  And if it's something like counting to 100, the alphabet, or the months of the year or days of the week, he will not stop until he's finished. We encourage him to whisper, but the fun part is he either doesn't understand what that means or he forgets.  Likely he forgets, or doesn't like the way whispering feels or sounds.  And we've learned that staying calm us key.  Us, that is.  The adults.  The minute we begin to be the slightest bit paranoid about what others think, I swear he feels it and takes it as a cue to melt down.

We love church.  We love the music, we love being with God's people, we love worshipping, and we want our children to learn to love those things.  More than that, we want them to love God.  So we do our best to educate them at home, but also bring them to participate corporately.  There are times when I wonder if we're being too hard on him, if he's getting any of this or we're just making him frustrated.

Then, in the middle of no where, right after silent confession, Ryan said "hallelujah!"

I think only Eric and I could hear it.  Well, Eric and I and God.

We stared at each other... in "didja hear that?!" mode... smiling from ear to ear, and then looked at Ryan, who was absolutely beaming.

He did it again, later, when we all said it together before communion.

So often I've been thankful for our children, and in so many ways.  But more than anything, I'm thankful that they saved us from ourselves.  It's funny... we thought, when we were having our children, that we'd give them this and that... stability, a good home, loving parents, etc. ... and while all those things are great and we do seek to give them to the kids, we had no idea how much God would teach us through our kids.  No idea.  Each of them brings something special to the mix, and each of them is amazing in their own way.  Then there's Ryan.  Through his challenges we have learned a ton.  Helping Ryan understand and be involved in church has  saved us from cold, stale religion for religion's sake, and certainly religion for society's sake.  Have you noticed in the south that "good people go to church"?  For the most part, that's true.  And we were falling into that trap.  We had no idea, but how we did church was actually more important than why we went.

Not anymore, and I hope it's not again.  Our kids need better, and we need better.  And obviously, Ryan IS hearing and IS learning, whether or not we can quiz him on what he did in CE. Someday he'll know what that one word meant to my... to our... hearts, and maybe he already does.  But I know one thing... Ryan is the catalyst for our reassessment of what we believe and how (and if) we exercise what we believe, and we are inexplicably grateful for God's providence.

Hallelujah indeed, son!

Friday, March 9, 2012

Same old (or is it?)

With the glasses mess out of the way, now it's back to our usual challenges.  I say that, but there's this word, lurking in the background of my mind like the score of a horror flick.  Something's amiss.  We know it's part of autism, and it's exhausting to think about.

He's done that before.  

We had this licked.  

Oh, he hasn't done that in two years... 


Once in a while, Ryan ratchets back a bit.  We had waiting down pat, and accepting no was going great, pretty much.  We had self-injury backed off to extreme cases (can't say it was gone), and now they're both back.  Unwelcome, but back just the same.  Now I'm not an expert, but it sure looks like the ugly "R" word to me.  Lost skill.  And we've added some things, like inability to stand the sound the catsup makes when it's almost out.  You know, that rude sound I'll admit we still kinda giggle or snark about at my house.  We noticed this when he began holding his ears as we pour anything... ranch, catsup, mustard, whatever... at the table.  He's stimming way more.

I hate for him that so much is just so loud and hard to deal with.  I wish I could help him better, but I don't know how to do much more than we do.  Routine and very clear boundaries, ABA therapy that we've found and can get for him, staying in contact with others who deal with him at school, therapy, and church, and patience.  Just bearing with him as we can.  Not that it's easy all the time.  It's easier at some times than others.

The other hard part is we just have to watch.  When I notice his elbows black and blue again from banging them, I know he's having a hard time.  Yesterday, he started self-injury over being asked to ask politely for hot chocolate.  He punches himself in the head and grunt-screams so hard you can hear the smack as his little fist hits his head.  I'd honestly rather he hit me.

One of the other things that scares me is that I can't pick him up for long.  I can't hold him to keep him from destroying the house for much longer.  Our kids aren't overweight, but they are solid.  No hollow-bones in our house.

In a few minutes we'll leave for the only therapy in which we've been able to participate.  In part because it's what we know exists in our area, partly because while it stretches the budget quite snugly we can do it.  But more than money... because God always provides... is the issue of WHAT.  What do we do?  How much?  I don't feel like we do near enough for him.  Richie and Maelynn have little kid issues, like fussing about this and that, fighting over a toy... and I can deal with all that.  But we feel the clock ticking for Ryan. It's hard not to look at him and be afraid we're not doing enough.  That he'd be okay if we'd just...

The only thing that makes anything okay is trust that, if God can keep planets from colliding, he's capable of giving us what we need, when we need it.  He gives us joy to hug and encourage and play, peace to sit and listen to him hit the walls and scream during therapy, and faith to rest in the knowledge that he sees our pain, our fear, and will always keep his promises.

That said, it's off to Baylor and Ms. B.  It's raining and cold, so the littles and I will read books and play with the bucket of bear counters, taking a little stereotypical childhood with us.

And whether it feels like it or not, it's going to be alright.

Thanks be to God for consistently being himself.  :-)

Wednesday, March 7, 2012

He is Good

Today's Wednesday.  Busiest day of the week.  I've been applying myself to thinking ahead better, because it makes our lives so much easier.  Still the same amount of things to do, just in a smarter order, at smarter times.  Got home from our Groesbeck ladies' bible study today, and since I've been applying myself to a cleaner kitchen, I had a couple of minutes.  One of my favorite mommy bloggers, whose site I won't share because, well,  I'm not sure she wants the traffic.  It's more of a family site, I suppose... and to keep folks up on the progress of her daughter, a heart patient.

We found this couple through my in-laws.  Friend of a friend from church kind of thing.  We've been praying or this little girl for so long, and I've followed the parent blog so much I feel like they're friends.  We've never spoken, never met, but we've pulled for that family and followed the story so much that we feel like we know them in real life.  K, the mama, is one who I think would be fun to know.  You ever read someone's writing and think, "You know, I can see us hanging out"?  They are believers, they are incredible parents.

As their little one took a turn for the worse, as I noticed on posts last week, they posted a lot.  They took a lot of pictures.  I'd open, see them, read about them, pray for the family, and close the email.  Or delete it, you know... gotta keep a clean inbox.

This morning, however, at a time when I normally would not sit at the computer, I did.  Due to my preparedness from the night before and having had lunch at bible study I had a minute to check the ol' email.  I noted an email titled "Peace."  Simply stated.  I expected more pictures of that sweet little girl, who always reminds me of Mae and Richie because she was born right in between them.  That precious face with an innocent, joyous smile curling from behind the tubes in her nose.  More pictures of the family together, more pictures of her mama cuddling her.  Just like yesterday (or was it the day before) when K spoke of how she laid there dozing between kiddie tv shows, breathing shallow... and I had the most horrible thought... sounds like Nanny did right before...


That doesn't happen to babies.  My mind wouldn't allow it.  I don't know how I could live through losing one of my babies, so no way.  Funny how the mind works.  

Then I scrolled down, and saw that she went to be with the Lord this morning.

Then I scrolled further, and saw her dear daddy's words, as always...

"God is always good, and we are in his hands."

I had to hurry and get my little ones off to pick up brother, who had to have a lens replaced, I noted as I saw him.  But who cares?  He's alive and well.  I tried to not think of little L and her mom and dad, and I just couldn't.  After a while, driving down the road, listening to Richie and Maelynn's sleepy breathing and Ryan's stimmy-speak of going to this and that elevator, riding trains, etc. the tears began to flow.  I reached out to just touch my little boy... I patted his leg and left my hand there.  Usually he'll brush me away, but this time, he put his warm, soft, puffy little-boy hand on top of mine.  It's like he knew I just needed to feel his healthy, warm touch.

My heart hurts for this family.  More than ever, I look around and see that our troubles are things we can handle with God's grace.  I'm inclined to think that we should all just be thankful to worship the giver and not the gift.  Not as much in the "well, we should be grateful because look how much worse it COULD be" camp.   We all suffer, and it is not for one of us to say that we suffer more than another.  L, in her life, and her mama and daddy, in her death, have reminded me in a profound way to keep Christ as my center.  Not my husband, not my kids, not in band, not in being an autism mama, but my identity and my firmest foundation is Jesus Christ, our Lord and Savior.  He has not changed.  He will not change.  The triune God will be forever and ever.  He has been my comfort in ages past, and will continue to be my comfort in deeper, greater levels every day of my life.

So while this family doesn't even know I exist, they've encouraged me, made me feel less alone as a special needs mama, and now God has used them to strengthen me as I watch them go through something I just don't think I could live through.  And as we speak, the little girl who didn't get to talk, run, and play like a regularly-abled nearly three year old is able to do more than we could imagine.  Please join me in remembering this family as they go through this time.  Though I'm not sharing their names, God knows who you're talking about.

Tonight, I can honestly say that having to do all the extra stuff I had to do because Eric worked late, the optician messed up and only put transitions lenses in one part of Ryan's glasses, the meltdown over dinner again, all that stuff is feeling light and momentary.  Tonight I'm thankful for every beat of my babies' healthy hearts.

And again, as always, thanks be to God.

Why?  Because, as the man said, "God is always good, and we are in his hands."


Tuesday, March 6, 2012


Ah, what a time it's been since I last saw you. You see, shortly after I hit "publish" it was time to pick up the big boy.  I woke the littles, buckled them in the van, and we hit the ol' pickup line.  No, not the "hey baby, did it hurt when you fell from the sky" pickup line.  The one in front of the school.  At about the same time as I get a text from his teacher to tell me, I discover as Ryan climbs in the van that his glasses broke at the nose piece.  Clean in half.

A couple things you have to understand... we got these frames because they were the ones he liked.  They are uber-cheap, but that's mostly because they're the ones he liked.  Okay, they're the only frames he didn't RIP off his face as soon as I put them on.  Click here to get the glasses back story. And I should have bought another pair.  Any mama of a kid with glasses would have.  But I didn't.  Whoops.  Honestly, I was just glad to get through the day and get out of there before we were thrown out.

The other thing you just have to understand is that Ryan is a sensory-seeker.  He loves deep pressure.  One of the things he does during a meltdown or even just a fit (yes, I think any autism mama would tell you there's a difference) is push his glasses against his face.  Hard.  And he doesn't quite have the fine motor to put on glasses like you or I would... he kinda pushes them on from the front.

Anyway, his teacher did her best to get them back together so he'd be able to see.  And it's not like when I was a kid and broke my glasses.  Whoops, broke my glasses.  Got them patched, but gotta be careful.  I could do that.  And if I forgot and they broke again, I could calmly walk up to the teacher and ask for help.  Guess how Ryan told his teacher his glasses broke.  Go ahead.

Got your guess?

Here's your answer... he yelled "HELP HELP HELP!!!"  From the bathroom.  Thankfully, there is a bathroom that is shared between each of the kindergarten/prek classrooms.  That's where he was.

So we got home, with Ryan's glasses taped together at the nose with clear tape... very nerd chic... and I took off the tape, thinking either my favorite craft glue or hot clue would surely hold them.  He was not impressed to have to be awake and functioning without his glasses.  It could have been uglier than it was.  After about thirty minutes of trying all the glue I could find, I re-taped them and put them on his nose.  I explained emphatically yet simply as I could that he needed to be very careful.

Yeah. Sure, mom.

They thankfully stayed together with only one re-taping until Eric got home.  I remembered that, as a kid, my Nanny's fake fingernail glue used to hold everything that other glues didn't.  Two mostly smooth surfaces that were too slick to be held by others would usually be held by nail glue.  If you know me at all, you know that there's no room in my wardrobe for things like fake nails.  No nail glue in this casa.  So soon as Eric got home, I took off for the dollar store, praying they'd have some so I would have to drive to Waco by myself with all three kids and attempt to entertain them all for the hour it takes for glasses.  Yes, an hour can be very long.

Why wouldn't Eric go?  He had a band booster meeting to attend, then a winter percussion rehearsal and needed dinner early, then wouldn't be home till nine or so.  Funny part about marrying someone who shared your profession... I know exactly what his job entails, and I know he has to do what he has to do. So I'm left with nothing but being understanding, because I love him and want him to be successful.

Not gonna lie... I loved the trip to the dollar store.  So quiet for the two minute drive, so peaceful in the store, so amazingly easy to finish a thought.  I love my kids, but man, that was a nice fifteen minutes.

Anyway, I had barbecue chicken for sandwiches in the crock pot, and with Eric's help, I managed to get the glasses fixed and we got food on the table.  Ryan had a burger we'd fixed in the interest of switching up his eating... not all pizza all the time... and he was not impressed.

Eric left for his evening at school, and Ryan melted down completely.  He didn't want his burger, obviously.  He tried to put it on his brother's plate when he thought I wasn't looking... which is pretty higher-level thinking, so I was a little proud.  But still, dude, you have to eat.

The rest is a blur of him screaming, red-faced, nearly knocking his chair through the shutters and window behind him, me having to keep him from hurting himself, and me having my own little teary mama meltdown, to put it lightly.

The whole time, my Richie and Maelynn sat at the table, singing.  They alternated between "Twinkle Twinkle, Little Star" and "Jesus Loves Me."

Friends, I don't know much.  I never claimed to be a genius.  I never claimed to be an expert on anything.  But I do know that I don't deserve these kids.  I know I fail them.  I'm thankful beyond words for them.

I know I have to keep working... to keep looking for better ways to help Ryan through these times, and for better ways to get me through these times.  To find ways to explain this stuff to my littles.  To find ways to not lose the sweetness of those simple melodies with simple but true words in the complexity and noise of everyday life with autism on top of normal stuff.

Reach down through the noise, Lord, and take my hand again.  Help me up, help me stand.  Help my son.  You can hear his thoughts and know his heart, and can heal his hurts better than I can. Please help me help him.

Precious Lord, take my hand
Lead me on, let me stand
I am tired, I am weak, I am worn
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home
When my way grows drear
Precious Lord linger near
When my life is almost gone
Hear my cry, hear my call
Hold my hand lest I fall
Take my hand precious Lord, lead me home
When the darkness appears
And the night draws near
And the day is past and gone
At the river I stand
Guide my feet, hold my hand
Take my hand precious Lord, lead me home
Precious Lord, take my hand
Lead me on, let me stand
I'm tired, I'm weak, I'm lone
Through the storm, through the night
Lead me on to the light
Take my hand precious Lord, lead me home

Rev. Thomas A. Dorsey (1899-1993)

Or on to the next thing... through the next meltdown... would be great.  Because I can't do it on my own.

And I know you're good for it, because you have so many times before.

Thanks be to God.  

Monday, March 5, 2012

Skunk Funk Meets New Members

There's no eloquent way to say it... dealing with skunk funk is part of where we live.  We have a pier and beam foundation, largely because we love this house, the neighborhood, and the lot, and it's kinda old.  Well, by American standards it's old.  Go on a trip to Europe and your whole idea of and "old" building will change.  Anyway, skunks like to get under our house.  We work on keeping the places where they get in blocked, but as Richie likes to say when he's frustrated, it's no use.  Every once in a while, we hear the dogs yip, then we sense the little two-toned friend's presence.  

Sunday morning in the wee hours, we heard the dogs stir.  Yes, they're so used to it that they just stir.  Then there was the smell.  If you've only experienced the drive-by version, allow me to enlighten you. It's like having rotten, nasty, raw onion shoved up your nose and down your throat.  You can taste it.  Heck, you can chew it.  Bleh.  

This wasn't a run-of-the-mill Sunday at the Senzig house.  Our membership class was being presented to the church today.  In other words, I wouldn't be hiding at the back of the church with my jeans and comfy sweater.  I really needed to at least wear a skirt (haha... there go my expectations again... never mind that I probably look better in pants and no one would have batted an eye) and guess where all my "real clothes" are?  That's right. In my closet.  When I opened the door, I found where the skunk was under the house.  Right again!  You're so smart.  

The smell was so awful that I couldn't bear to stand there and pick out my clothes.  I got a stand fan and aimed it in the closet to hopefully thin out the reaking half-life, and jumped in the shower.  

Eventually I did find clothes and we made it to church just fine.  I even asked a friend if we smelled like our striped friend, and mercifully we didn't.  And oh, am I proud of Ryan!  He made it through the whole thing.  He rode on my back and didn't even bat an eye at having to stand on stage for a few minutes.  He didn't jump off my back and into the open grand piano, either!  His therapist was there, and I betcha she was as proud as we all were.  

You know what's funny about the whole skunk thing?  Ryan doesn't notice.  He is a sensory seeker in some things, and is sensory avoiding in others.  He loves bright lights, and even with the light sensitivity with glaucoma, he'll stick his nose on a headlight of the van with them on.  He loves joint compressions, and has been known to get an ice cream headache on purpose!  On the other end, he hates the feeling of hair falling in a haircut, will hold his ears as you squeeze a catsup bottle, can't stand the sound of the washer, dishwasher, or any little humming sound.  We've recently tried drowning out some of the noises he can't stand by putting cotton in his ears, simply because it's hard to run a household when you can't use certain appliances when the oldest is in the house.  We can, but it's upsetting to him... I mean, shaking, crying, ear-holding upsetting.  Yesterday I ran the washer in another blasted fit of normalcy.  Towels need washing.  I'll wash them.  Ryan didn't have to be in the kitchen, and I didn't hear him complain, so I just did it.  

I honestly didn't give it another thought until we were picking up toys to get ready for bedtime stories.  Richie volunteered to pick up the cotton balls.  Immediately I started to blow this off, thinking that he must have mistaken that for something else.  My husband heard me question it and explained.  Apparently Ryan went to the bathroom, found the cotton balls, and was attempting to shove some in his ears.  

I felt bad for running the stupid washer.  My heart sank.  I'd caused Ryan frustration and discomfort again without even knowing it.  I'm his mother, for crying out loud.  I should know.  I should be able to at least know that he'll do better with something in his ears and, if I have to run the washer or dishwasher, at least allow him that simple comfort.  It's not expensive, and it's easy to come by.  It doesn't even take a whole cotton ball.  But I missed it.  

This is just one example of where we are.  I feel like we've merely seen the tip of the iceberg of the things that horrify Ryan on a daily basis.  It's like me and small spaces.  Ever since I had Maelynn, I can't do small spaces for long at a time.  Even snuggle time Saturday morning can get interesting if I have a child on each arm and covers over me.  I just HAVE to get up.  I can't explain it.  But you know what?  I can get up.  I can move the kids if I have to.  If I can't, I can tell my husband and he will do it.  I can complain about the smell in the house, and so can Eric.  We can and have formulated a plan to deal with it.  Ryan, on the other hand, doesn't yet posses the ability to consistently verbally express his issues.  So every day, he walks through this world doing the best he can with what he's been given.  

At the end of the day, isn't that what we're all doing?  

We're working toward greater patience with all of our kids, but Ryan is the one who demands it most.  We're trying to better see situations before they happen, if we can, through his eyes.  This is why he was on my back.  I thought that looking out on the crowd from behind mom would  not just be more comfortable, but give him a sort of boundary.  You've heard me say over and over that we have to continue living... but we have to live smart.  Being presented to the church as new members is incredibly important to us.  So rather than do what we would have done sans-autism, which would have meant getting the littles and having them stand with us on the stage, to present our whole family to the congregation, we realized that keeping things normal as possible would be best.  So the littles stayed in the nursery, and we did the whole thing with just Ryan.  Having him sit with someone else would have been more disturbing, too.  

Yet again, this brings me to how God deals with his sheep.  He knows.  He has seen what we will go through, he walked the path, and gives us what we need when we need it.  He knew we would fail, that we couldn't help it no matter how hard we tried, and seeing that, he gave us Christ.  He defended us when we needed it most.  He rescued us when we had no hope of rescue.  In a conversation yesterday, I actually said that I wish I could wrap the sovereignty of God and the hope and peace and comfort I have, courtesy of Christ, in a pretty gift bag and walk around and hand it to everyone on the earth.  To everyone who is frustrated, angry, hopeless.  To everyone who is lonely.  To everyone searching for something... anything... to fill the emptiness.  To anyone who has hurt so much they are bitter.  To those who have been rejected so often they've shut the doors completely.  To all those precious people, all those mangled hearts, I wish I could simply hand them the peace, grace, mercy, and hope of God in Christ.  

Since I can't do that, I'll see you here again tomorrow. Same bat-time, same bat-channel.  To twenty or a hundred, or even one.  

Thanks be to God for cotton balls, the good sense to plan ahead, and the forgiveness of that precious seven year old boy when I don't. 

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