It’s all about fun, fun, fun… Yeah…whatever!!!

The very idea that we are a self-indulgent bunch is ludicrous.  Self-contained, yes…self-indulgent, no.  Our idea of fun hinges on transitioning into new things with as little drama as possible.  That goes for all of us, not just for J.  We let out a collective sigh of relief when the potential meltdown or crisis is averted.  Those who don’t understand this way of thinking simply have very little understanding of what are lives our truly like.

I would like to debunk some myths, mainly because I am up to my non-existent gills with the absurd notion that we think the world revolves around us, especially coming from people who don’t even try to understand our world.

Myth Number 1:

We are sitting at home, having cocktails and laughing…mainly at you.

Myth debunking fact:

We go up and down the stairs more than you can imagine.  Every moment with J is a moment when something is being taught or reinforced.  Our self-centeredness is based on necessity: we have a huge mission in our hands, and if you’re blessed with healthy, whole children, you might have a hard time understanding this.  Your kid might be able to split the atom at the age of six, but ours doesn’t even know how to tie his shoes at the age of seventeen.

Myth Number 2: 

We envy you, and that’s why we resent you and don’t socialize with you.

Myth debunking fact: 

We’re too busy to envy anyone, just like we’re too busy to socialize with anyone, especially if they are stubbornly dedicated to not trying to understand what we’re up against.  Do you have ANY idea how much toilet paper J goes through in a week?  Mind you, he doesn’t go to the bathroom more than the average person; he’s also not any messier than the average person, but we haven’t been able to get him to understand that he doesn’t need half a roll in his hand even if it’s not a “no toilet paper needed situation.”

Myth Number 3:

We’re too sensitive.

Myth debunking fact:

No, we’re not too sensitive; better yet, the possibility exists that you are not sensitive enough.  “Take me or leave me” is a fine attitude, and we’re cool with other people having it, but that doesn’t mean we have to sit there and invite you into our lives, especially when “take me or leave me,” in some cases, is a choice.  J doesn’t have a choice; he’s the way God made him, and we have to work with that and help him.  People who don’t show enough presence of mind to realize that this is a fact of life for us put us in a difficult position.

Myth Number 4:

Since I’m home all day, I’m sitting here idly fanning my ass, being fed grapes by muscular demigods who are at my beck and call, and I have nothing important to do.

Myth debunking fact:

Do you own a laminator?  Do you have any inkling of how many words your child should know and be functional with by the age of seventeen?  Have you had to break down a task into the simplest steps and teach it over and over and over again?  Do you think that I take this LIGHTLY???!!!  That there is no effort involved?  That I didn’t wish I didn’t have to do this?  That I don’t wonder what the world would have been like with Alternate-J???

Myth Number 5:

It’s just us parents who do this; TGG is blissfully uninvolved in this process.

Myth debunking fact:

I don’t care how much responsibility you carry on your shoulders today.  I don’t care how much responsibility you’ve carried on your shoulders in the past.  Did you KNOW at the age of FIVE that you would be your brother’s keeper once your parents are gone?  Is your entire future (since a very early age) colored and textured by the understanding that you have to grow up?  I don’t just mean growing older, I mean maturing.  TGG is a healthy, happy, normal 21 year-old…how do you think he feels about still having to help his hairy, big, seventeen year-old brother bathe or wipe his butt?

A family is very often made up of parents and children.  Ideally, the children grow up and move on, and new families are created.  It is quite possible that our family is nothing like yours.  We do things differently around these parts.  We’re not better than you are; we’re no worse than you are.  We simply are different.

Are we self-involved?  Yes.  Are we self-centered?  Yes.  Are we self-contained?  Yes…with good reason.  We have learned over the course of years and years of doing this that we are IT.  There’s no one else.  People love us; people care about us, but we are -for the most part- alone in this process.  There are those who call and don’t even mention J when they ask how we’re doing.  There are those who, in spite of having witnessed our life in short scenes, can’t quite empathize.

People get offended.  People think we’re dissing them.  We don’t care.  Not anymore.  We’re tired of being told we need to grow “up,” “a pair,” “hair on our chest.”  Personally, I’m sick of “blood is thicker than water.”  I don’t care how thick it is, I still haven’t had anyone very close to me genetically fully understand what it is that we go through every day.  I am tired of the popular myth that we are “spoiled” and we “have it easy.”

We don’t.  No one in this household has it easy.  No one in this household set out to be this isolated by circumstance.  I didn’t walk into the OR, jumped on the gurney and said “please, extract this child by C-section and make him Autistic so I can be left alone, and people can think I’m a bitch because I don’t have time for them.”  My husband didn’t marry me so he could have an excuse to get out of family dinners.  TGG CERTAINLY didn’t ask me “please, give me a brother that I will have to be invested in for the rest of my life, who will probably determine if my marriage survives, if my children grow up in a different household from mine.”

This is a household where crises are not unusual.  We are all traumatized by J’s horrible behavioral problems of a couple of years ago.  We think of them and the music from Jaws starts playing in our heads.  Were you there for the blood?  Were you there for the scar tissue?  The sleepless nights?  The anxiety?  Were you there for the boxing gloves, the hats?  Have you had a child so desperate and so sad that you thought you’d lose him?  I don’t care if you think that prayer works or God doesn’t exist or there are no miracles, but those moments bring you to your knees like you never thought anything would.  Please, please, God, if you’re listening don’t do this to HIM.  Help me help him, please.  And you realize what is important, what matters, what you would do for those you love.  Four people, stuck in a house, wishing they can fix this…and when it’s over, and it’s fixed, you live wondering if it’s going to last.

You think we have it easy?  Don’t let the fact that we love each other and are happy fool you into being so misinformed…


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s