Wednesday, November 13, 2013

The Follow Up

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

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

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

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

I know, so very sane of me.

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

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

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

Here's where I get frustrated.

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

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

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

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

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

Here's what I've come up with.

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

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

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

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

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

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

Let's be nice out there.

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

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