Monday, March 4, 2013

In Case You Were Wondering...

Every day we do life our way.  We don't realize the ways we've adapted, morphed our routines and patterns into something more Ryan-friendly... or our brand of autism friendly.  Sundays are no exception.  We work together to make it out of the house by 8:15 so that we make it to CE by 9:15.  Not that it happens all the time, mind you... but we do our best.

I lay out the kids' clothes the night before, and while I'm in the shower, Eric dresses the boys.  He's our morning person, up and showered before everyone. After talking through the mental checklist, consisting of everyone's breakfast to eat on the way, bibles, pull-ups, wipes, drinks, and a "juicy red sucker" for Ryan in church, and "mommy's iPod with headphones" for him if we need to go somewhere, we're on our way.

In the halls, we keep moving.  We wave to friends and keep walking.  If we were to stop, Ryan would not.  If we attempt to take his hand, he will start squirming and crying.  There is something about this that he just can't stand.  If people try to stop, I just smile and say, "sorry, my train is moving!"  Anyone who knows Ryan or has seen us knows how things are and understands.

Then, if Ryan has been good in CE and church, we go to the kids' favorite fast food joint, which Ryan has lovingly dubbed "star."  Since we do this so much, the employees have come to recognize us.  When we're gone on a Sunday, they even mention they noticed our absence when we get back!  

And that's the end of the safe places.  The rest is a toss-up.  It's getting to the point where the chance Ryan will melt down in any given store is greater than the chance he won't.

Here's where I have to make it clear that we don't expect anyone to feel sorry for us or solve our problems.  That is never our intent.  But there are ways that folks feel they should say something and add, intentionally or unintentionally, to the frustration of what's already going on.  In an attempt to bring these to light, a Facebook page called The Aspie Mom shared a list of things one should never say to an autism parent.

I reposted, thinking that maybe one person would read it that hadn't realized and would care to change how they'd react.  I did worry that someone would have reacted this way out of ignorance and would feel horrible for doing so in retrospect.  If you're wondering, I haven't heard any of these lately... so if you've visited with us lately and think you might have done this, no worries.  If you have in the past, you're forgiven.

The thing is, I'm not sure anyone realizes the WHY of these things hurting.  Just in case you were wondering, here you go... with many thanks to "The Aspie Mom" for posting the list.  And while we're on the topic of disclaimers, these are my heart's answers to these questions and comments... not necessarily the same as anyone else in a similar boat.

He looks normal.  Are you sure he has autism?  
Why, yes, I am.  While it's great that you think my boy looks "normal", it's still hard to hear you question his diagnosis.  This one, at this point, pretty much rolls off my back.  But when a parent just received a diagnosis, too many of these can cause claws to fly out.  If you knew how many hours of paperwork and years of waiting in agony to get a diagnosis so we can get help, you wouldn't flippantly question.

Is your child retarded? 
No.  If this word is still being used to describe folks with special needs, it's time to realize that it's antiquated and is an insult at best.

Wow, how do you do it?  I could never deal with that.  
This one doesn't bother me so much.  I'd rather it wasn't spoken in front of my son, who may have verbal communication issues but has ears and a heart that work just fine.  The only mental answer I ever have for this one is "How do you?"  Everyone has a lot in life.  This just happens to be mine.  "By the grace of God and the skin of my teeth" is the most accurate answer I can give.  And honestly, that's the answer most folks with completely "normal" lives have this answer at one time or another.

I would never allow my child to act like that. 
Wow.  Okay, let's assume that control isn't an illusion and that you can control your child's behavior.  Do you honestly think I choose to watch my son beat his head and scream? No.  I don't.  If you have been blessed with children who always obey, never disobey, and have never and would never do anything that could possibly bother anyone else in public, great!  Please be gracious and realize that you have been blessed... and that but by the grace of God, you could be right where I am.

It's just the way you raised him. 
Oh, I've heard this so much.  So very much.  In so many different ways, folks have dismissed his behaviors as a lack of parenting on my part.  Suggesting that we just completely botched the raising of our son does not "fix" anything about him, nor does it make us feel better.  But if you're saying this, chances are you're not worried about how we feel.

If you can't control your child keep him at home. 
So you're offering to buy my groceries, run my errands, and keep me locked in my home with my child 24/7?  I'd love that!  I really would.  I would love to stay home with my kids all the time.  But all kidding aside, if this is something you'd entertain leaving your lips, I'm impressed that you read this far.  You have no idea how much it takes to even convince myself to leave the house some days.  You have no idea the temptation I have fought with every fiber of my being to completely shut out the world to keep him... and my other kids... and us... from the hurt of the world.  

You're lucky. It could be worse. 
Yes, indeed!  But consider, please, the next time you're having what you are sure is the worst day you can imagine, my saying this to you.  There is a time and a place for such statements, and these things are almost always meant to be spoken to oneself.

He/She just needs some good discipline.
Oh dear.  No.  The only reason he's out in public without wetting his pants... the only reason he speaks at all... the only reason he can stand anything in this world for any amount of time... is because of disciplined, love-driven parents who fight everything from insurance companies, laws, to themselves to do what they can for their child.  More discipline than you realize is in place here.

Stop using autism as a crutch.
Ouch.  Just ouch.  No one who truly deals with autism is using it as a crutch.  It's not a fashionable diagnosis.  It's not a trend.  It's not a diagnosis they "hand out to everyone with a problem."  Again, if this is something you're saying, building us up must not be your goal.

It's God's will and he will only give you what you can handle.
Another that doesn't hurt so much... but it does have theological issues.  Yes, everything I go through is God-filtered.  But at some point, this starts to sound like "stop whining." If you could see the amount of times I've fallen to the floor in desperate, exhausted, confused tears because I didn't know what to do next, suggesting that I can simply "handle it" might be something you'd think twice about.  Tweak it a bit, maybe... and realize that if you tell them that God will give them what they need to handle it, something you can do quite outside your comfort zone may be that something they need.

Why did you have another one if your oldest has autism? 
It is just not your business.  It's just not.  This is like asking your friend with brown haired kids why they had another if the first one has brown hair.  Or why they don't look in the mirror before they leave the house.  It's just not anyone's business but their own.  My answer for this?  I wanted more kids.  There you go.

You should try this.  I heard someone was cured this way.
Um, thanks?  And very few of us will do anything other than smile and nod at this one.  So very many nice, well-meaning folks say this.  Please know that especially at the beginning it's horribly overwhelming to have everyone's "fix it" ideas thrown at you.  Most of these things require ginormous, costly life changes that not everyone is ready to make.  If you must make a suggestion, do your homework first.  Be prepared to do part of the footwork.  For example, if you're not willing to cover half the cost of the new diet and teach this person to cook all the food they need for it, and get their child to eat it, please don't suggest it.

You should probably send him away to a home. 
The thought of this makes my blood run cold.  This is my baby.  Oh, please never suggest this.  I fight every day to help my boy become a positive, productive member of society.  I might as well cut my heart out and send it too.  This is one that has been suggested to me by someone I had just barely met.  And by barely met, I mean "Hi, my name is... and I think you should."  Except there was no "Hi, my name is."

You need to potty train him now. 
This is a fight that very few in the autism community have been spared.  I am relieved and grateful that my boy managed this, with few accidents, by six.  It is a long, hard road.  I can guarantee you they're trying.  It is just hard for these people to do!

You just need to start being a better parent. 
Well, if you're suggesting any of the above, isn't it a given that this is how you feel?

Just leave him with me for a week.  I'll straighten him out.
Again, this is dismissing years of doctor visits, paperwork, observations, and agony.  To suggest this is to suggest that you know better than everyone we've ever worked with.  I just don't think so.  Even as a joke, please don't.  If you're serious about this, I can assure you that it would work the other way around... and that's if I would allow it.  Which I wouldn't.

Now for one of my own... a sentence starter I've come to dread...

Why don't you just...
"Just" implies that it's simple.  It's not.  There is no "just" doing anything.  Everything is filtered through the set of things we've learned about Ryan and who he is.

In every one of these comments, there is a lack of trust that we are doing our best.  There are people who wouldn't mind a lot of these questions.  We are all different!  Just as there are a few that don't bother me as much, there are probably parents out there who might not mind educating anyone who suggested one of these.

I wish I could say that I've never experienced any of these.  Most of the comments I've received have been from people who either thought they were helping, educating me, or sharing vital information.  Please remember that we're human.  We have feelings.  Before you speak, consider asking yourself if it needs to be said, if it needs to be said by you, and if it needs to be said by you right now.

On the other end... to all of us in the boat, not looking from the shore... remember to be gracious.  We are not excused from kindness and patience, grace and mercy.  If you have an opportunity to educate someone kindly, by all means go for it!  But please consider the three questions in the paragraph above before you speak.  And consider that you are an ambassador for us all, and that rudeness and pointed answers spat out of a hurt heart may do more harm than good.

More than anything, we're all human.  We all have feelings. We all need grace and mercy, and we all need to be trusted that we're doing our best every day.

As always, thanks for listening.

Thanks be to God for his grace and mercy, and for the diversity that teaches us the need.

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...