Wednesday, October 30, 2013

Mommy Hug

I've had another opportunity to revisit the workplace this week.  It's always fun in its own way, and every time it makes me acutely aware of two things.  There are just two, and they're pretty crazy profound.


I miss my job outside our family.

I'm glad I don't have to work all the time.

Told ya.  Complete opposites.  And to really confuse you?  I feel guilty for working when I'm there, and I feel guilty that I'm not earning money and using my education and talent outside the home.

Every time I get a glimpse... just a minor, stick your finger in the soup taste... of the other side I'm made more aware of the different-yet-sameness of our situations.  Each has its challenges and easy spots.  Each has its benefits.  And on either side, there's guilt if you want it, and boy are we moms good at signing up for it, and sometimes doling it out like handfuls of that one kind of candy you bought too much of.

But why?  Is it really helping for me to look over at so and so and insist that she must be doing things right because she's working and easing the money burden while showing her kids that mommies can succeed in the workplace too?

 Is it helpful to underhandedly bash those who work outside the home, even by a simple sidelong comment about how it must be so sad to have to work?

Is it helpful for the working mom to look at a stay at home mom and think she must have all the time in the world?

Is it helpful for the mom who works to feel guilty as she sees the kids with their moms trick or treating while she sends her kids with friends?

Is it kind, helpful, or encouraging to assume we know better than someone else does for their family?

Or... would it be better to trust each other?  Would it be better to realize that there are great moms who do things completely different than you do?  Maybe all this talk about how none of us are good enough should be more calming than guilt inducing.

Maybe we need to support each other where we can and judge each other less.

Maybe we need to make the only assumption about someone else's life that they know it better than we do.

I know why I chose to stay home.  Eric and I have our own set of reasons for why we chose to keep me as close to the kids as possible.  Some of them are incredibly personal, some are pragmatic, some are based on how our families did things.  They may be completely different than yours.  Your decision may be completely different than mine.  But it all boils down to the same thing... what is best for our families.

So if you're a stay at home mom, a part time working mom, a working mom, a mom who sews and crafts and bakes her head off, a mom who hits up Etsy and Target, the local bakery or grocery store, a mom who loves to play Candy Land over and over unto oblivion or a mom who lets her win the one time then moves on, whether you love letting them get dirty and messy or just want them clean, whether your house is neat and decorated or piled and plain...  I have a message for you.

Great job.  Carry on.  God has given you a great gift, and you rock it.

Thanks be to God for the Moms of all shapes, sizes, mentalities, styles (or lack of style), and other walks of life and forms, for we all bring something unique to our families that no one else could possibly top.

Monday, October 28, 2013

Please Rise...

Just before the sermon, our pastor (or the scripture reader, whoever that happens to be for the week) makes a simple request.

Please rise for the reading of God's Word. 

So simple. Just put your feet down and stand up.  There's only one problem.  

I just got him calm and content.  He's been hitting the windowsill behind us, crying out with this and that, and he JUST calmed down.  If I stand now, it's back to square one.  

It's time to ratchet our appropriate behavior up a notch.  Until now, it's been fine for Ryan to lay all over me during church.  But as an 8 year old, he's getting to where he can nearly knock me out of my chair.  It's time to learn to sit at least part way up.  

This is such a complicated time.  I want to do what is expected.  To show respect and reverence for the public reading of the Word of God by standing.  While I know I'm not judged here, by and large, for my need to remain seated, today it's huge. 

Some days it's no big deal  I'm flying on something, be it coffee or optimism or someone's encouragement, and in that moment I'm ready to try whatever.  To push the envelope, to fearlessly hop up an stand there listening with the rest of you, come what may behind me. 

After all, there is nothing physically keeping me from standing.  Not anything other than the 90 pounds of kid leaning on me, anyway.  

Other days, like today, it's not the eighty five or ninety pounds of kid I'll have to lift.  It's the thousands of pounds in my chest. 

On those days, I feel the battle on my heart and in my bones.  I'm sore from the days' or week's battles. If I even inadvertently cause one more hit or grunt or squeal, surely the frustration dam will burst and we'll all be swimming in my shortcomings and impatience and selfishness and all the things I just can't handle.  

So many times I've said, sometimes through a curtain of tears, that if I could just go through each day on auto pilot, with no strong feelings, just numb and could feel no disappointment, pain, exhaustion, shock, or a host of other things, things would be so much easier.  And maybe they would be easier.  Just do it, don't think.  Just act on what I know, not clutter knowledge with feeling.  

But that wouldn't be where parenting happens, would it?  

You're not told they'll graduate from high school or college and possibly go on to be a doctor or lawyer or whatever they want.  You're sitting there staring at the cute little email from Gerber or whatever with the milestones he's missed punching you in the gut.  The ones he had but lost kicking you while you're down.  You're left with the basics... oh, and your dreams and expectations.  You'll find time to deal with those later. 

There's that fire in your belly that screams "THIS IS MY CHILD!"  You find it fast, and learn to temper it.  Yes, temper it.  Not put it out.  Teach it, train it.  Add knowledge and wisdom.  But never, not ever, do you put it out.

It's that very flicker... even if just a spark... that rises and reminds others and yourself that this kid has a purpose.  He has as much of a purpose as you do, what with your temper and selfishness and all.  Maybe more.  You never know.  But you're bent on his having a chance to find out.

What to do with the other end, though?  The time when the thousand pounds of exhaustion and frustration in your chest?

Realize the crossroads.

That's the place when my ability... or really, complete and utter lack of ability to comply with all of life's demands meet my desire to be obedient.  Because honestly, I can't.  I can't be right all the time.  I can't be calm and caring and just right all the time. I can't even be NICE all the time.  I. Just. Can't.


Not always physically.  Just keep going.  Do the next thing.  Just do it.  Yes, take a few minutes to realize how you feel.  You have to.  But remember that everyone hits that spot where they realize that it's impossible.  If they haven't yet, they will.  And in that moment, remember to hold fast to the hope we profess, for he who promised us is faithful.  Even if it seems trite at first.  That reminder that you just can't do it?

It's a reminder that the grace of Christ already did.  And you don't have to.

What is a frustrating experience is actually a tiny example of the big picture.  I can't.  I try, I live, I do what I can, but in the end I need more than I have.  And thanks be to God through Christ, that is okay.

So thanks be to God for that one request that nags.  Thanks for the times I can comply, and for the times I can't, and what they both remind me.

Tuesday, October 22, 2013


Take a minute and think about how many "awareness" groups you've seen.  Go ahead, just see.

A quick stroll through Facebook will reveal any number of groups of folks... entire communities... of different abilities, states of mind, experiences, diseases, the list goes on.  Our culture has leaned toward those colorful magnetic ribbons, bumper stickers, as well as endless websites and Facebook pages and groups devoted to this, that, and the other.  The cynic in me is starting to take a second look at all this.

Don't get me wrong, I've greatly benefitted from the advice in some of these places.  Just seeing a snapshot of life in other families with autistic children, women who have lost a baby, have experienced postpartum depression, and have had trouble with one or more parents to name a few.  There have been very dark times in my life when few people were willing to jump in and help slog through the pain.

In others, I've found biting snark, divisive judgement, and other extreme words poisoning the waters.  You just never know.

I've been tempted to blame this on laziness, the ease of hiding behind a computer.  But I really think that would only tame a few of the offenders.  So I'd like to propose another awareness group.

I swear, I can almost hear your eyes roll.

We seem to have so often forgotten, even in especially in Christian circles, that we are human.  Fallible.  Imperfect.  Prone to fits of frustration, judgement, and bad decisions.  Just by complaining to you about the people who are ugly, I'm in a way being the same.  Judgmental.   I don't know what those people have been through or what they face on a daily basis.  The most hurtful posts I've read may have been written on the absolute worst day of that person's life.

In light of our shared predicament... you know, not knowing everything about anything... I'd like to propose we adopt human awareness.

Some of you already do.  I know that there are those of us who do the best we can, although it's always an imperfect attempt (see, I can't even do this exactly right) to remember that not one of us is better than the other, but maybe if we had our own little ribbon-magnets we'd remember easier.

Just think of the implications!

We could all do away with our particular ribbons if we'd just turn to each other and really listen after we ask, "How are you?"

And maybe, just maybe... we'd finally be comfortable answering truthfully when someone asks.

Maybe we would get to the place where we wouldn't have to explain so hard.

Maybe if we gave the benefit of the doubt more often, we wouldn't spend so much time and energy worrying about who doubts us and who we should maybe doubt.

And how incredible would it be if we knew each other's problems and issues from personal contact to the degree that we felt supported enough to not need to call attention to the need for understanding?

Unfortunately, I can't see my Autism Awareness sign coming down from my yard, vehicles, or front door anytime soon.  And I'll continue to see your awareness signs, realizing how little I know about you and your issues.  It's necessary.  And when it comes right down to it, it's where I'm comfortable... and I bet it's where you are too.

But we can dream, can't we?

Thanks be to God for the grace, mercy, and forgiveness we enjoy through Christ.

Monday, October 21, 2013

The Smile

After the hike from the parking lot to the third floor, he bounds through the quiet to knock on the door.  Okay, he diverts to the elevator that he refuses to ride on the way up.  Maybe he thinks I like the stairs, maybe he's realizing that Mama needs the exercise.  Either way, he's only going to ride the elevator AFTER therapy, thank you very much.

This time, the littles are with Granny.  It's just me, my headphones, and my book.  A nice, long breath and a look out over the lush, well-trimmed lawn and trees of campus later, it's mama time.

Not very long into mama time, another child bounds up the stairs through the quiet.  Now it's pseudo quiet anyway, with the headphones and all.  They sit at the end of the long table.

Well, sorta.

He's about three or four.  She's likely in her twenties or so.  He's in jeans, a well-matched t-shirt and hoodie, obviously well cared for.  She's in jeans and whatever sweatshirt she could grab, with her hair pulled back and little to no makeup.

It's like a mirror.

She's trying desperately to keep him calm and quiet to no avail.  He wants to play with the iPad, but grows frustrated quickly and expresses himself in squeals.

I get it.  I do.  She's not bothering me at all, neither is her boy.  But the bother is all over her face.

Soon as I can, I try to give her the smile, and let her know that they're not bothering me.  Not one bit.  But the smile seems to make your stress worse.  My heart sinks... I fear you're mistaking it for pity. But it's the farthest thing from pity.

I've talked over this smile with other moms, especially autism moms.  It's that smile that says so much.

I get it.

I may not get all the ins and outs, but I get it.

I know you're trying.  I know it's not working.

I know you're bringing him here because it's something you CAN do, and because those CAN do's go a long way to combat the list of CAN'T do's.

I know you want him to be quiet and respectful.  I've been there.

I know you can't get him to eat anything but goldfish and croutons.  I know you've gone out of the way to try and it just doesn't work.

I know you can't even go to the grocery store.  I know.

I know you have the recurring nightmare about losing him in the mall or at a huge public place.  I know what it's like to wake up tired because you've been chasing him all night in your dreams.

I know what it's like to wake up to screaming every morning.

I know what it's like to dread putting your feet on the floor, begging God for the grace to make it through breakfast, much less the whole day.

I know what it's like to wait to hear "mama" in a meaningful way.

I know what it's like to go to bed with the place locked down and alarmed so that if a door or window opens, all hell breaks loose... but still with your heart pounding just in case he gets by it somehow.

I know what it's like to not be his comfort, and to not know where it is.

I know you want to strangle or slap or maybe both the next person that says anything that starts with, "Why don't you just..."

I know you don't know what to do next.

But I also know you don't know that I know.  And I know that words have become cheap and meaningless in so many ways.  So I keep my head down, stay in my book... not just because I have a deadline for reading it, but because you don't know you can trust me.

Then the clock tower chimes the hour, and out bounds eighty-five pounds of pure joy, right at his mama.

I throw down my book, scoot back fast in my rolling chair, throw open my arms, and receive a little boy who has worked hard for the last hour on transitioning to a non-preferred activity.  He then runs around and tries to bang on every glass surface in the waiting area while I talk to his therapist for a second.  You watch me block him with my body from running away, while he giggles and enjoys the pushing back, being the sensory seeker he is.

Then, as I'm scrambling to beat him to the elevator, I glance back and see that you know.

You're seeing yourself in a few years.  You're seeing that it will be okay.  Different, yes.  But definitely okay.

Maybe next week we can talk.  If you want.  Or maybe the smile will be enough.  After all, it may be all you can muster.

I get that too.

Thanks be to God for the smile.

Wednesday, October 16, 2013

Duck's Face

The other day, Richie came running up to me asking for crayons, paper, and his "kid" scissors.  It was clear that he was on a mission.  Seeing as this isn't my first day as the mama, I asked what his plans were.

"I'm gonna make a Duck face for dis coach! Ryan wants a Duck!"

He held, in his sweet little brother hand, a black Trackmaster coach.  One of Ryan's train toys, though not one of his beloved engines.  Through much explaining that this was Ryan's toy and he should be careful with it and that maybe Ryan wouldn't be so thrilled about this gift, I tried to save him from the disappointment... but I stopped. 

He was just too excited.  He was so serious about doing this for his brother.  Since his plans for his brother's toy wouldn't actually be damaging to the toy itself, I let him go.  

Here's what he came up with. 

Sweet, right?  He knew his brother wanted Duck the engine.  He wanted to give it to him.  He worked hard on it, starting over a couple times to get it just the way he wanted it.  To the naked eye, it was a piece of yellowish construction paper taped to what was clearly a black coach.  But to Richie, it was a green, squareish engine with a pleasant countenance... just the thing his hero had been asking for. 

I have to admit I felt a bit guilty knowing that as soon as Ryan got home he'd discover this and rip it straight off... or worse, completely melt down.  Honestly I hoped Richie would forget.  

Nothing doing. 

Soon as his brother came home, Richie ran and delivered the gift personally.  

It wasn't as bad as I'd feared, Ryan just said nothing and promptly ripped the carefully fashioned face from his black coach.  

Richie was no less crushed, unfortunately.  He came to me in tears, telling me what just happened.  He wasn't just sad, he was a little angry that his brother hadn't appreciated his gift.   

This kind of thing has happened so many times with these two.  Richie pours his love for his brother into something.  Lacking social understanding in so many ways, Ryan rips it apart and or has a complete fit because something in his ordered comfort changed.  

This time, Richie's disappointment was less.  He was less upset, less angry.  While it still obviously hurt him just as deeply, he's learning to navigate the pain of that disappointment. Through these dealings with his brother, comfort from us, and being reminded gently that brother's just that way, but we're proud of Richie for trying to love his brother in that way, we're hoping a couple of things.  

One, that Ryan will learn empathy.  As these things happen, we talk to Ryan too.  We let him know that Richie loves him and wanted to give him this gift (whatever it is).  Once he's calm, if that's a factor, we can generally get an "I'm sorry Richie" and a "Thank you" from him.  

At the other end, we're praying that Richie will learn that gifts are just that.  They're gifts.  True gifts come with no price tag, whether the price be a future gift, favor, or reciprocation in any way.  As we give gifts, we must remember to hand over a gift, with the idea that the gift is to bless the recipient more than the giver.  Those invisible price tags, over time, quickly become millstones slung around the neck of the recipient.  If we choose to give gifts as gifts and not purchases on credit, the recipient is free to enjoy the gift, free to be grateful, and free to use it in the way that brings them the most help and enjoyment.  

Giving a true gift can be hard to do.  We expect a certain response, if we consider it.  We all hope the person will be super excited, right?  

As we enter the edge of the season of so much gift-receiving and giving, remember on both ends to consider the heart behind the gift.  And if you have a friend, child, grandchild, or friend's child who is on the autism spectrum, as you begin to plan for them,  keep in mind that this is all terribly confusing and sometimes scary for them.  Do reach out and invite; try not to be too upset if they're just not up to the challenge.  Do keep in mind, also, that a gift for an autistic child must be given... truly given... and not with an invisible price tag.  We are thankful and blessed to have every person who has given to Ryan to be exactly that way; giving because they love him, not because they desire a certain response.

As for Duck's face?  I taped him to the wall beside my stove.  He's treasured, though not by the one intended, for the beautiful expression of love that he is. 

Thanks be to God for kids who love... and for his being with them as they learn the hard lessons.

Monday, October 14, 2013

What I'd Tell Me Then

When I finally looked in Ryan's folder from Friday, I found this.  

He was about three, maybe four.  He has the same teacher now he did then, and I suppose she found this in her things and decided to share it with me.  Isn't he tiny?  

Now look that this one. 

Okay, look at those TWO.  He's just so danged cute that I couldn't possibly choose one.  

Lots of difference, eh?  In the first shot, he's a baby.  Just a puffy-faced, button-nosed three year old with the same haircut as the eight year old big boy in the second two.  

Five years' difference.  FIVE.  That's a lot of time, but it isn't.  In that time, we've kept our noses to the grindstone so much that it's shocking to look up and see a picture of him when he was Maelynn's age.  

I get it.  It's hard.  The hard is essential.  Implementing all those great tips and tricks from your therapists, helpers, aids, and teachers is a must.  Or well, at least giving it the old college try.  Their development, their quality of life, depends so much on our effort.  And boy, can it ever be exhausting.  

In the first shot, he was a baby.  Just a little guy.  But he already needed a huge amount of routine and therapy to help him make his life comfortable and happy.  There was little verbal communication, and I was so tired.  Not of the grind, yet, but of the worry. 

We have been riding the tidal waves and choppy waters of parenting a child with classic autism for eight years, though only five of those were years when we were aware of what we were up against.  And as I look back over those rough waters through the lens of a picture of his baby-face, there's an emotion peering from behind the obvious, "oh, isn't he tiny and cute!" 


Do I regret the therapies we've sought?  No way.  Do I regret not seeking some?  I'd be lying if I said I didn't.  But the main regret? 

The time I wasted panicking about today.  

No, not today's time panicking about today.  Yesterday's... five years ago's... panic about today.  While I was panicking, he was learning to talk.  While I was freaking out, poring over this book and that study and wringing my hands over not being able to afford... or even GET TO... that treatment, he was stimming on trains.  While I was fretting over what tomorrow would hold and if we were doing enough to meet that "deadline", the age when they like to say the window's largely closed... he was being a little boy. 

Yes, he was being a little boy with autism.  Yes, it's harder to reach and learn to be close to a little one who much prefers solitude.  But when I look back, I see time with my baby boy that I missed because I was terrified of what would be happening today.  

So what would I tell me back then if I could? 

Take a deep breath.  He's your baby boy.  He's no different than he was that night you held him in the hospital, thanking God for him while rain pounded the window.  

God heard you that stormy night.  He knew who Ryan was then, and who he would be even before that first sonogram.  He heard your fear of inadequacy as a mother then, and he hears you now.  He never changes and will never change.  

The only way you will be able to relax and enjoy that baby boy is to lean on that truth.  

Lean on and live in... truly let sink in... the promises you've known for so long.  The fact that there is a great plan for you to prosper and not to harm you and to give you a hope and a future, and that is true for your little boy.  That all things work together for the good of those who place their trust in the Lord. That he's known this little guy since the foundations of the earth.  

When you think about all that, living in a diagnosis-laden, different-feeling world isn't as scary.  

Remember that you'll see a big boy at some point, and try to let that remind you to enjoy the little guy he is now, not inspire fear and dread of what is to come.  Yes, he is different than you thought he'd be.  But he is exactly who God made him to be.  

Enjoy that baby boy.  Find a way to, just like on the playground when we were kids, stick your foot in the dirt and stop the dizzying merry-go-round of the road to diagnosis and treatment, and find a way to enjoy him for who he is, just as he is.  Verbal?  Enjoy him.  Nonverbal?  Enjoy him.  Stimmy?  Enjoy him.  Find a way. 

Because no matter how much is different about this little man, the one thing that is not different about this autistic little boy is that he will grow.  He will grow, he will lose his baby cheeks, and you will lose the ability to lift and hold him when he's scared.  

Taste and enjoy.  Somehow.  I know it's hard, please believe me.  But it's also wonderful.  I didn't say fun... I said wonder-ful.  Yes, you have to keep up with the therapies.  Yes, you have to keep working on helping him.  But enjoy him, too. 

And you know why?  I'm sitting in today, and while it's different than I thought it would be, it's also better.  

Thanks be to God for the miracle of our children, every one, with all their differences and idiosyncrasies... and for hindsight to share and teach us.

Thursday, October 10, 2013

Sick Day

Remember when I said last week that Ryan could deal with a stomach virus easier than a mosquito bite?  If you missed that post, it's right here

Well, I've had the opportunity to test that theory.  Okay, so it wasn't as bad as a throwup bug, but it was *ahem* intestinal in nature.  And it required much cleanup.  There were Lysol, Clorox wipes, and many loads of laundry.

The call came Tuesday, just as I was about to leave to go help out at the middle school.  He had a lower intestinal virus, one of those happy little things that gets passed from kid to teacher to kid easier than one of those fun folded piece of paper notes when I was in school.  Turns out the three other kids and the teachers and their kids in his class have all had it, and his number was up.

Not being one to say much about his feelings, emotional or physical, I kept him home Wednesday even though his last episode was Tuesday evening right as his Daddy got home.  I had no idea how he really felt, or if he was really over this, so I kept him home to make sure he had the chance to get completely over it.

It was another one of those days that seems to live you more than you live it.  It's a sick day, right?  Let the kid do what he wants, right?

Maybe that's okay for kids who don't get their security and understand their place in the universe by routine.  No, I know it is.  But take a random, slap-bang in the middle of the week Wednesday, have him wake up and tell him that there's not school today, but there is school tomorrow.  This is when I spend a good amount of time every day and night answering his "No school tomorrow, Mama?" question with the days of the week we go to school, then the weekend.

Talk about hard for him to understand.

Still he was happy to be home.  He ate his breakfast (which did stay in place for the proper amount of time) and played with his brother and sister.  Then, around 10:00 AM, I sat down with him to start his make-up work.  There wasn't much.  Two very short stories with five- or six- question worksheets to follow.  He could do these with his hand tied behind his back... but hear me on this one... he needs one-on-one help at school to get things done.  And when he's home, there's no exception.

We struggled through not the ability to do the work but the willingness, answering questions with his pencil after I struggled to help him answer them verbally, and that's in between his outbursts of tears and hitting and screaming, "NO THREE TIMES!"

He didn't want to write his spelling words three times, like his teacher requests.  I sat there with him, he did, but it wasn't pretty.

After this, I had a fit of normalcy and decided he'd get to watch a little more "Oh no James and Edward" than usual.  Usually, I sit and play DJ for a while in the afternoons while he picks YouTube videos of Thomas and his rail-riding friends.  They're mostly kid or parent made, and many of his favorites are of another kid unboxing a new Thomas set.

This went on for a while, then I needed to get the kids dressed.  As soon as a video was over, he read me the title (my rule, just a little reading practice... and hey, it's effective communication practice too), I hit play, and ran to get Maelynn's clothes (because yes, we kinda had a jammies day yesterday).

Then it got interesting.  He wailed and screamed and cried and hit and thrashed.

I misunderstood and started the wrong danged video.

There's no time for head-slapping, though.  I have to help him calm.  TV off, which was a very unpopular decision, but when it makes you flip out, it goes away.  That's a house rule around here.  That decision is one that I'd like to make in front of someone who thinks we just hand him whatever he wants.

As I'm working to stay calm and help him find calm again, I notice that he needs to use the bathroom.  He's had a small accident, and not of the scary kind that requires much bleach.  He just didn't want to leave the TV to potty.  So he goes wailing off to the bathroom.  I found something from the day before at this point that made me run for the Clorox wipes, but that's not terribly unusual around here.

Off to the bathroom, where the meltdown continues. After the previous day's bathroom routine change (you have a Montezuma-type thing and tell me it doesn't change your bathroom routine) he was afraid, for some reason, to sit on the potty.  So I'm hugging him, he's crying, and after a few minutes we're good again... or we were until he looked at his hand.

He had a scratch.  Just a place where he'd hit something and it peeled back a little flesh.  He wanted it OFF.  NOW.  More screaming.  More crying.  More terror.  OVER A SCRAPE.

It took a long time to convince him, first, that I couldn't take it off or make it instantly go away.  He even asked me to kiss it, then looked at it rather disappointedly.

No, buddy.  I can't fix it.  I can't make it go away.

I tried to explain in kid terms how our bodies heal themselves but that it will take time.  Days, even.  But no, he wanted it fixed now.  He scratched it, bit it, poked it, and tried to take it off.  Not kidding.  As much as it hurts to read, it hurt more to watch, and I'm sure it hurt him to do it.

The worst part for me?  Watching him hurt.  Watching him experience this terror over something so simple.  The feeling that I'm standing there watching him drown and not being able to explain how to use the floatation device I just threw. Trying to explain what it was.  How to grab.  And the whole time he doesn't seem to hear me.

The rest of the afternoon, once he allowed me to go and get his change of pants, then wash his hands, then go to the kitchen for a paper towel, which was a fight because I'd thrown all the bathroom towels in the wash, we put a band aid on his boo-boo.  Ten minutes later he ripped it off, yelling for me as he did so, and then another twenty later he wanted "Mommmmyyyy!!!!  Wash your boo-boo!" again, and another band aid.  Off and on for the next few hours, it was rinse and repeat.

It's hard.  You just want to make it right.  To find the words to bring him back to understanding that this is just part of life and it's okay.  Holding his exhausted, sweaty head, thanking God that he finally realizes sometimes that he can seek comfort from his mother's arms, I'm exhausted too.  Tired, too.  Ready to scream.  It's just not pretty.

But it's his life right now.  It's his life and I'm grateful for his life. I don't know why he struggles so much.  I don't know what causes autism, and although I can speculate and tell you ways it has made me a better person, I don't know why our boy.  I'm glad Richie and Maelynn seem to be neurotypical, that the don't seem to struggle the way he does.

All I know for sure is that we've lived through every meltdown so far.  Some have ended in Eric and I apologizing to each other.  Some have ended with us holding Ryan, apologizing for not being patient.  But they've all ended.  They've ended and Ryan has gone back to being his stimmy, happy, smiling, yet randomly shouting self.

I don't know why him, why our family... but I know that we made it through another day, just like we have so many other times.  It wasn't easy at times, but it ended well.  It started well and it ended well.  And now, it's time to thank the Lord that his mercies are new and he promises to be with us and do it again.

Thanks be to God that his mercies are new every morning.

Tuesday, October 8, 2013

Some Things I'd Tell a Kid Therapist

Last week, we talked about the things therapists, teachers, etc. hope we know in dealing with our special needs babes.  Just a few.  I could probably go on longer, but I wanted to get to this... it's actually been requested.

Before I get started, know that we've had only people who have been kind, helpful, and caring in our home.  Although I'd agree that there's always a lot to learn from a bad situation, we can't neglect what we should glean from good situations, too.  I've been thankful to have several wonderful people in our home helping us, helping Ryan... and I'll always be grateful for their presence in our lives and the huge gifts of help they've been.

There are a lot of you (I hope) out there getting ready to walk into your first home or school session with a child and/or their family, and there are a few things I think they'd like for you to know.

1. You're walking into my home, which means you're walking into my life.  You will be here on a regular basis, likely right after school or lunch or mid-morning.  No matter when you come or how much advance notice we've had, life with kids is unpredictable.  There may be toys everywhere, breakfast dishes still at noon (or after school... whoops), or a diaper pail that needs a trip to the trash or the washing machine.  Just brace yourself, and try to smile through it.

2.  You're not only walking into my home and my life.  You're likely walking into my home and my life with a recent diagnosis.  I may have read my eyes out once the redness and swelling from tears faded, and I may be so sick of hearing everyone's brother's sister's cousin's hairdresser's best friend's cure for autism.  In other words, I may be a little (or more than a little) protective.  I might even come off as a little rude.  Give me a chance.  My life was just turned on its head and I'm still likely very dizzy from the trip.

The first lady who had to work with Ryan was patient.  I know she was kind and knew what she was doing and worked hard for Ryan.  But in the newness of the beginning of finding out there was something different going on with my first baby and with the added challenge of first trimester pregnancy hormones, I didn't see that.  I thought he was screaming when she tried to play with him just because he didn't like her.  Yeah.  The truth was so far from that, but I couldn't see it.

If that lady had tried to tell me I was out of my gourd, or had been snotty to me in any way, I might have just dropped therapy out of anger.  Bad idea.  I'm thankful that I didn't, and I'm thankful that she was caring and thoughtful of my feelings, not just those of my son.

So what you're doing requires much patience and few knee-jerk reactions.  Give us time, especially if we're new at this.  The she-wolf, mama-bear instinct dies hard.  And really, do you want it to die?

3. If you suspect something more than a simple speech delay or whatever other simple thing you think might be going on, get your ducks in a row before you suggest ANYTHING.  The only way I was able to process this was gradually and from those who had done the proper testing, etc.  You can damage your precious relationship with this family by knee-jerking this way, and you could be responsible for turning them off to the desperately needed early intervention you've heard so much about.

4. If you suspect something, follow the proper channels and pursue it.  As in, if you're thinking autism and the mom has no idea, talk to your superior and make sure you follow the proper channels.  There's that "early intervention" thing again.  So important.

5. Teach me.  Truly involved parents want to know what to do to continue what you're doing.  We know that the best way to improve our child's behavior, speech, whatever is for us to do it while you're gone.  So teach me.  Give me reasonable assignments.  Give me some of your knowledge.  Isn't that why you learned all of that anyway? You're gonna get a paycheck.  Teach me so that we can work together.

6. Be reasonable.  Even the most devoted, loving, determined parents are human.  We get tired.  We get overwhelmed.  Remember to check what you're asking us to do against how difficult it would be if this child lived in YOUR home.  Then remember that we're different people.  Especially remember this if you don't have children of your own.  Remind, yes.  But lovingly, helpfully.  Not in a snarky way.  If you're tempted to snark, zip it.  Remember, this relationship between you and the parent is important to being able to help the child.

7.  Remember that we're overwhelmed.  I know this might seem repetitive, but it's so important.  If I had a nickel for every time I wanted to cry when a therapist, diagnostician, teacher, or other educated, well-taught, well-meaning individual gave me advice that was going to mean completely tweaking my WHOLE LIFE... like every second from sunup to sundown... I'd be able to afford a family Disney trip every year.  I'm not kidding about number six.  Be reasonable.

8.  Listen.  I know we can't take most of the time that you're scheduling for us to talk your ear off about how the last trip to the park went down in flames, but every minute around your visit that you spend hearing how rough his day has been is appreciated.  And you know what?  We don't mind at all hearing about how cute your kids are, either.

9. Tell us when we're doing a good job.  We don't get report cards.  As a matter of fact, every last meeting seems to be about the latest problem and how to tackle it.  If we impress you, tell us.

10.  Remember that this is permanent for us.  You work with an autistic child for an hour; we do every last minute of life with him.  That's another that can tie into being reasonable. But it's also pertinent to the education of us.  We want to know how to help our little guy more than anything in the world.  That's why you're here.

11. If we've traveled to see you, take it upon yourself to learn how far we drive.  Just... well... just care a little.  Even a little.  Especially at scheduling time.  If I've got to drive 45 minutes plus pick up my child then walk for five minutes to get to you, keep that in mind.  It's lovely when this is done for us, and thankfully our ABA folks do that.

12. If the kids have siblings, take that into account in your dealings.  If you're in the home or in a clinic, remember that your presence is cutting into their childhoods, too.  In a given week, my children have spent around seven or eight hours every week either driving to or sitting through therapy for their big brother.  That's a pretty good chunk of time over three years.  If you can offer a bit of a waiting area in a clinic, do.  It makes life a lot easier!

13. Get to know this kid.  If you truly take the time to get to know him, he will hold a place in your heart.  The more time you spend with a child, the more you'll see him or her as a person, which of course they are.  You'll get to know their heart a bit, what makes them happy and sad, what they like, what they hate, and even if they're a bit difficult... or maybe more than difficult... you'll find that you still love them to pieces.

14. Know that we appreciate you.  You've given your time and money to learn how to care for our child, and we are grateful.  There may be some who don't, but there are those of us who are so thankful  for your time and work.  And you know what?  You work for our Ryan, you wind up part of our family, too.

Thanks be to God for you who have chosen to be therapists, teachers, and kid-helpers of all kinds.  You who truly love our kids and work hard for them are certainly worthy of our gratitude!  

Friday, October 4, 2013

Therapy Primer: Parents

In light of yesterday's post, I thought it might be a good time to talk about some of the ins and outs of therapy.  You would think that, as I think many do, having that person in your home or at a therapy center or clinic work with your kids a couple times a week (or even more than that) would be enough.  Not so much.  

The best therapy is for us to learn from the therapist, and implement things at home.  Therapy woven throughout the day is the very most effective.   Think of it like brushing your teeth.  Would it be best to have a dentist tell you once a week for an hour how important it is and teach you oral hygiene techniques and tips, then go the rest of the week without brushing, flossing, or rinsing? 


Obviously the only way to care for your teeth is to do it every day, several times a day.  Yes, we need to see the dentist, but we can't just pat them on the back, thank them, and walk away unconvinced.  We have to do our best to figure out ways to work the things our kids need into their and our lives, embracing the changes as much as we can.  There are things that we learned from our first speech and behavioral therapists through ECI when Ryan was two that we still use!  Every time I turn on the vacuum I still announce loudly, "Ready, set..." and then wait for Ryan's "GO!"  

That seemingly little change helped Ryan deal with so many loud noises, including the blender, food processor, and several other things.  It gives him a sense of control, or maybe just a warning, of such a scary thing.  It's little bricks like this that help us build a solid foundation for Ryan to learn to enjoy the world.  

The very most basic thing... consistency... can be the very hardest.   That was and is the most overwhelming thing for me.  I can't just decide it isn't working and change midstream without talking to Eric and everyone else involved with Ryan's care.  It's not that I can't, really... more of a shouldn't.  Then again, if there is a change and it works, that must be broadcast too.  

And here's one that I'm having to learn.  Brace yourself, because this one's a little radical.  

Cynicism and distrust need to be healthily curbed.  

Yes, do your homework.  Read up, by all means.  But before you tell a therapist or teacher or IEP committee exactly where they can go if they don't do things the way you think is best, hear everything out.  Think.  Don't allow your pounding heart to make decisions by itself.  There are times to stop the train immediately, dig in your heels, and refuse to be moved, but they are fewer and farther between than some would have you think.  And if your child is honest-to-goodness being treated poorly or unfairly, stand up and refuse to be moved.  But I would urge you to carefully consider these times.  These are people you're dealing with.  Fallible, often tired themselves, people.  Always remember that you never know what someone else is going through. Extend the same kindness you'd wish to be treated with yourself.  Do stand up, DO advocate, DO be their voice... but let it be fitting and kind.  A lot can be done by simply holding your ground, and without being nasty. 

That includes the most simple of all... showing up.  

Simple, right?  But the longer I live as a special needs parent, the more I hear the thanks that we come to things like therapy sessions and ARD (IEP for you non-Texans) meetings.  You know what that means?  That means some people don't even show up.  The other funny part is that if you're reading this, you'd likely never dream of standing up your therapist or ARD committee.  Accidents happen, yes.    Work schedules happen too.  But consistently enough that two out of three of the places we receive therapy and education services have praised us for simply SHOWING UP?!  This disturbs Eric and I both greatly.  I mean, we're thankful for the encouragement, but come on parents.  These are the kids who need the most consistency.  They need our support so desperately.  

I get it.  It's overwhelming.  This is your whole life you're laying out here, and it seems at times like it's all there for someone else to pick apart.  It's so important to do what we can to leave our egos at home... on both sides.  

Thanks for listening... and tomorrow, we'll look at the other side.  What would parents like therapists, teachers, and the like to know?

Thanks be to God for you and your interest in doing the best thing for your child!  

Thursday, October 3, 2013

Home Therapy Happiness

For the last year and a half, we've had a speech therapist in our home twice a week.  She comes prepared with what Ryan needs to work on, goals set with homework done and ready to roll.  She's always prepared to deal with whatever.  

Sounds clean and neat, right?  Easily said, neatly delivered.  Took a few seconds to type, likely quicker to say.  And it was honestly pretty easy to obtain, if you don't count any paperwork or insurance runaround.  All I had to do was be home. 

So easy right?  And so simple.  

The thing a lot more people than I realized don't think about is that these people get paid for working with your kid.  As in, they don't get paid if they don't work with your kid.  And they're leaving their kids to drive to your kid.  

Add this to folks who decide to use them as free babysitting, refuse to listen to them, or act like they're there to serve you and have no feelings, nothing else to worry about, or like their time isn't at all precious, and you have a lot of why we have a hard time getting therapy out here in the country.  Okay, soap box time over.

Our precious speech therapist had her last day today.  We celebrated her with a little brownie sundae and sent her with a little treat to share with her family, hardly a drop in the bucket to the time she's spent  preparing, driving, and leaving her family behind to work with my child.  

Guess why she left the therapy agency?  Not because she didn't like the people she worked with.  The agency people were nice and cared for her as best they could.  Not because she didn't like the parents or the kids, either.  She was patient and caring and loved Ryan and us even though he called her "ms. Kari-NO!" for a few weeks.  

She left because she wanted to see her kids.  Can't fault her there at all.  And after doing all the things she's done, driving all the hours she's driven just for our family, not even considering all the prep time and travel for other families, in the end, she left with our last celebration... adding each other on Facebook so she could keep up with Ryan, and Richie and Maelynn too.  Because, as it turns out, when a wonderfully caring lady comes in your house for that much time, twice a week, for a year and a half your kids grow attached.  

She walked into our house through all kinds of crazy times... including the time we got our wires crossed and weren't home when she got here.  Knowing we aren't the kind to just not be here, she even called around to check on us.  She loved on Ryan, Richie, and Maelynn, and listened and advised me when I was at my wit's end.  

Speech.  Yeah, that's what she was here for, but she cared for all of us in different ways.  And she's always got a friend and a place to hang out on our corner. 

Thanks, Ms. K... again... we'll miss you tons.  And remember to hug your family and thank them for us too!

Thanks be to God for ladies and gentlemen like Ms. K, who love kids like Ryan and families like ours enough to finish tons of school and testing to spend time making our lives better. 

Tuesday, October 1, 2013

Mosquito Lessons

Last Sunday, we were looking forward to a nice, calm, family afternoon.  What we got was pretty much as calm and family as it gets around here.  The weather was beautiful, and even a little cool, which is pretty off the norm for Texas weather.  While Eric went about his chore of draining the pool to put it away, I brought the kids out to play in the backyard.  Soon they became a bit bored with that, and wanted to ride bikes in the driveway.  

We live on a busy street, so we just back the cars out of the carport and let the kids have at it.  They ride in circles... okay, so they are supposed to ride in circles.  I spend most of my time out there reminding them not to run in to each other.  
The flowerbed just outside the breezeway needed attention.  Since I was right there anyway, I started slinging weeds and chopping away at the out of control shrub that blocked my garden flag with Snoopy jumping into leaves.  It's one of those little things that makes you kinda sad when you pull in the driveway... and I saw a chance to nail it, so I did.  

About halfway through, I looked up and sister had some serious mosquito bites.  Crud.  I think she's more allergic than most of us, and although it doesn't seem to bother her, I grabbed the bug spray and hosed her down.  I got Richie too, and intended to get Ryan, but he was in the backyard with Eric.  These days, my brain seems to be a lot like a coffee filter.  Only the big chunks stay in. 

When we came in the house, I was about to get the allergy spray stuff from Mom and cover sister's leg when I noticed Ryan crying.  Wailing, really.  Big tears rolled down his terrified eyes as I approached him.  As I sat next to him on the couch, he reached for me like he needed rescue.  

"What's wrong, buddy?  Can you tell Mama what's wrong?" 

His answer was a bit alarming.  "It hurts!"  

After a long back and forth of "show Mommy what hurts" he finally reached at his shin and grunted.  

A stupid mosquito bite. 

"Is that what hurts, honey?  That bump there?"  

His usual breathy, quiet yes followed.  He scratched it.  I got the anti-itch cream and covered every bite I could find.  

For the rest of the evening, if he discovered another one, he's start wailing, "Mooommmyyy!!!!  Mooooore!!!"  

That's autism for ya.  This kid was a champ when he had a stomach virus in May.  No big deal, just find a bucket, lay around and watch movies.  But a mosquito bite?!  Heaven help us.  

There are little things like this that remind us, constantly, that there is a difference here.  There's always something nagging, or at worst jumping up and slapping us... like wailing like he'd been shot over a few mosquito bites.  

They don't make sense.  There's no stopping most things from upsetting him, and there's little talking him out of being upset.  Some are bigger, like his inability to wait in a line for something in a setting outside home, or his unwillingness to hold our hands to cross a street, or the lack of understanding that he has to stay with us in a crowd.  Then there are little things like mosquito bites that we have to feel our way through, validating his fears and yet trying to bridge the gap of understanding that it's okay, and hey, buddy... next time it's "itchy" not "hurt"... but yay for telling us.  

And people ask how I do it.  How Eric does it.  How those who love to visit us for a few days at a time put up with it.  

It's our life.  He's our son.  He's their nephew, we're their friends.  It is what it is. You just do.  You get up every morning and put one foot in front of the other.  Honestly, once you start really embracing the ways you have to adapt, I'm tempted to say it's just another way of life.  Maybe not a lifestyle choice, but it is a way to live, and we're living in it.  And when these things crop up, you do what you can and move on.  

Not because you want to, not because it's always fun or easy, or because you've figured it all out.  Because you never figure it all out, and just when you think you have, here comes a blasted mosquito or a candle or a butterfly to remind you that the best control is to realize you don't have any.  

Life with a kid with autism is different, yes.  It's not at all what I thought I wanted.  It's not at all anything I aspired to.  But it is what we have, and life... although it's hard sometimes... is still worth it.  Still wonderful.  Not easy, not perfect, not always fun or always a cake-walk, but it is full of wonder.  

Now, if you'll excuse me, I need to go buy some more Deep Woods Off.  

Thanks be to God for the things that make us uncomfortable enough to truly enjoy comfort.

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