random notes and chit chat from the insanity of our life

Peek into our life and see how crazy it can get with 6 kids, homeschooling, sewing, and now farming. We're in our first year on the land, and entertaining the world with what we don't know. By the grace of God, we're learning, day by day, so pull up a chair and laugh with us!

Thursday, December 28, 2017

Are you ready to listen?







1 in 36
Do you see that?
Do you comprehend it?
Does it matter to you?
Are you ready to listen?
Are you ready to understand?
Because you don't.  You don't understand it, unless you are one of us.  Unless you live with it, day in and day out.  You don't understand.  You think you do, but we can tell you don't.  And you need to.  You NEED to understand this, because it's going to affect your life too, and your childrens lives.  Even if they aren't one in 36, they are getting a world that will be changed by it. 
Think about it.  1 in 36.  If it was 1 in 36 with chicken pox, people would freak out.  If it was 1 in 36 cars recalled, there would be an uproar.  1 in 36 dead...it would be on every news station all day long.  But ...crickets.  1 in 36 with autism...and no one says a word.
And I think it's because you. don't. understand.
You think autism is the 4yo who knows every dinosaur and their dining habits.  The teen who is a "bit socially awkward".  The guy at work who doesn't realize no one cares about his ONE hobby.  Those are the faces of autism to you.
Well, it's time to talk.  My son has high functioning autism.  High functioning.  Sounds great, huh?  Yeah.  Let's talk.
This is the face of high functioning autism.
It's making grilled cheese multiple times a day for weeks because he doesn't eat anything else...for weeks.  It's buying cheese in 5lb blocks and being worried you will run out.  It's buying bread a dozen at a time because you go through a loaf a day just on him.  It's a fridge full of yogurt and a half dozen bags of frozen pineapple because that was his last food, for 3 months...and then one day, he wouldn't touch it.
It's wondering what sleep is, for him or you.  It's being glad he's finally old enough that you don't have to stay up with him 24 hours a day for a few days at a time.  It's worrying that while you sleep, he will decide to cook his own darn grilled cheese.  It's being thrilled if you get 4 hours sleep without him waking you up.
It's meltdowns in the parking lot of the grocery store.  It's calling the sheriff on your 12 year old, because you can't get him calmed down and he's becoming dangerous to himself and others.  It's taking him to the ground and sitting on him to keep him from hurting you and the staring bystanders.  It's sobbing as a kind stranger lays on the ground next to him for 20 minutes trying to help you calm him.  It's taking him to the ER where he is restrained and sedated...and it's waiting for the hospital to find a placement in a psychiatric hospital for stabilization.  It's visiting him there on Christmas.
It's being thrilled that THIS TIME, the hospital they get him into is only an hour from home, because last year it was 3 hours each way.  It's being overjoyed that THIS time, he's only there 4 days, as opposed to 10 last year.  It's considering that to be improvement.
It's spending a ton of money on gas to go to therapies and counselors and such.  It's not doing fun family activities because he gets overwhelmed so easily...and because you can't afford them.  It's always keeping a bit of money hidden for more bread and cheese, or whatever the next food is he eats.  It's keeping snacks in the car, because when he's hungry, it's NOW, not "when we get home"...and HE is who the jokes about "hangry" are about.  It's worrying about getting together with friends, because he might have a meltdown.  It's not HAVING friends...because most people can't handle it.  It's being afraid the internet will go down because that's his soothing mechanism.
It's hearing people say things like "he melted down over that? Sounds like an overreaction"..."Just tell him no.  He's spoiled"..."you are too hard on him"..."that kid needs a good spanking"..."I would never let MY kid act that way"..."He will eat when he's hungry.  No kid will starve themselves"..."You can heal him with this diet/oil/supplement/vitamin/therapy/exercise/meditation/discipline"...
It's knowing that the only people who understand are other autism parents.  Even your family, much as they love him...they don't get it.  It's being utterly alone much of the time.  It's not having a church community because he can't handle the noise.  It's not being able to participate in normal "kid" activities like sports, clubs...because he may meltdown. 
It's worrying that ...maybe this is it.  Maybe your life will always be one meltdown after another...one grilled cheese after another...one hospitalization after another...until he's an adult and it becomes jail...or worse.  It's worrying that one day, it will be a phone call telling you he threatened to shoot someone and got shot himself, maybe by a cop...because he had a meltdown and no one knew he had autism.
1 in 36.  It's 1 in 36.  Seriously.  Do you hear us?  Do you understand?  Do you care?