Thursday, January 30, 2014

It'll be okay.

"Courage isn't just a matter of not being frightened, you know.  It's being afraid and doing what you have to do anyway."  ~Third Doctor

More than about any other comment, when someone approaches mid- or post-meltdown, is "I don't know how you do it."

I know it's a compliment.  It's something to say when the frustration and obvious hurt creates a vacuum.  It fills the air without being insulting.  If taken the right way, it can even be a compliment.  When speaking to moms who work outside the home, I've said it myself.  And I mean it in a positive way.  Like, "Look at all you do.  I'm not sure I could do that."

Partly, that's correct.  I couldn't do what you do with your kids in your life.  I'm not you.

When I hear that same thing directed at myself, I'm often tempted to say, simply, "I don't."  Because I don't feel like I "do it" in a good way, or even an acceptable way, all the time.  Things don't always go well.  I don't always handle them well... or at all.

Sunday, as I headed into worship, all giddy because Ryan had a great day in CE, I was slapped with a tidal wave.

Eric had tried to convince Ryan to do something slightly different... and I mean SLIGHTLY... and he completely came apart.  I caught this as Eric was escorting him out of the building to calm down.

With Richie in tow, I was suddenly struck with a whirlwind of what to do next.  In about a nanosecond,  I looked up and saw our pastor, milling around in the back in the usual black robe.  I don't even remember what he said, but it was some kind inquiry about whether or not it was okay... or maybe it was just that it will be okay... and my usual composure flew apart.  Another friend flew up beside, offering her help.

I had absorbed all I could.

It doesn't happen often, amazingly.  We all pretty much keep it together because it's what's needed.  Every minute, I truly believe, God gives us what we need.

Us.  Not me.  Us.

Ryan is not in a good state of mind when this happens, I'm sure.  I know it's horrible for him.  Honestly, that is why it's horrible for me.  It's just as horrible when no one is looking.  It's just as horrible when we're at home alone.  It's hard to watch your child suffer in that way.

Make no mistake, I celebrate him for who he is.  He is a cool kid, just as my other two are.  He is funny, sweet, smart, loving, and just amazing.  But there are times when it's hard.

I get confused as to what's okay to say.  I see so many polarizing posts about autism parenting and I just don't understand it.  Yes, Ryan is awesome.  He's severely autistic, and completely awesome.  But meltdowns are NOT AWESOME.  They're painful for both of us.

And on the other end, Ryan is not a miserable burden.  Life as an autism parent is, if I'm honest, probably harder than general parenting.  I like to say it's an extreme form of parenting.  But it is certainly not a fate worse than death.  Being Ryan's Mom is something I would not trade for anything, just as I wouldn't trade Richie or Maelynn.

Do I wish it was easier?  Sure I do!  I wish it was easier for him.  Everything.  But if that means he would be a completely different kid?  No way.

And this is where I'm torn.

These people should be respected.  People who have autism, people who are autistic, should be respected as any other person would.  They should be given helps to make things possible where possible.  Their feelings, thoughts, and emotions need expression and heeding as much as anyone else.

All of this is extremely important, and it should be at least half... maybe 75%... of autism awareness.

Then there are the rest of us.  Those who hear the screams.  Who watch him pound his own little hand with his chubby fist with all his might.  Who advocate for him.  Help him find his voice.  Pray for peace for his heart.  Adapt every little thing at home to make things doable for him and us but at the same time push him to do things like dress himself, tie his shoes, clean up his toys, speak kindly, ask for things appropriately, and a myriad of other things that seem so commonplace and regular.

They're so much more of a fight.  It's just something you'd have to be here for.  Yes, all kids have to be taught all that stuff.  And you get screamed at a lot.  You watch him hurt himself because of something simple you asked him to do.  Every day.  Sometimes at the very start of the day.  Sometimes before he's out of bed.

And it gets hard.

You get tired.  Not a nap-tired, more of a weary-soul tired.

It's hard to watch your child hurt.  And this may not be physical, but it's definitely pain.  If you could see the look on his face, hear the pained strains of his voice... this is not a throw-down temper-tantrum.  It's an indescribable amount of frustration, confusion, and things I can't describe because I haven't personally felt them. You'd have to be here.  I've thought briefly before about a way to share what it's like, but that's where I draw the line.  You won't catch me posting video of his pain.

We have to, choosing our words and the recipients of our words, be able to say it.  It's hard.  I don't like that part.  I don't like having to say it's hard.  But it's the truth.  We have to, as parents, be able to say it. We need someplace to safely say the things that are hard out loud.

We need those folks to come alongside and listen to us cry.

And that's what I got on Sunday.

An inquiry, shoulders to cry on, arms to hold, hands to help.  And judgment-free ears to hear those words spoken so hesitantly, so seldom, and only in safety.

I just get tired.  Sometimes it's so hard.

Saying this doesn't lessen Ryan.  It doesn't diminish who he is.  It doesn't mean I love him less.  It means that I'm human.  And I get tired.  It does mean that I love him enough that it hurts to see him hurt.

Thanks be to God for the unshockables.  For those who reach out and aren't afraid to get tears on their clothes. Who aren't afraid to deal with the mess.  Who really want to know how you're doing. Who will not just tell you it'll be okay, but put feet to helping it BE okay.

Live in the Waco area?  Need this kind of unshockable grace and mercy?  Click here.  

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