Monthly Archives: November 2013

Throwback Thursday! No, No, NO!

here’s an oldie from 2011.  Also? VERY grateful he’s out of THIS stage now…

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No! No! NO!

This is Ben’s new mantra. yay for me.

kids with Autism can hit some milestones  a little more slowly than neurotypical kids, so it turns out all the joyous things typical kids go through in their 2’s & 3’s are currently entering Ben’s repertoire.  awesome.

A recent conversation:

mommy:  Do you want something to drink?
Ben: (screaming)  NOoooooooo!  Goodbye mama!  goodbye mama!
Mommy:   (grumbling) ok.  nothing to drink then.  (leaves the room)
Ben:  More milk?  Milk, mama?
Mommy:  (sigh) Ok.  Let’s get some milk.  Grab a cup.
Ben:  NOOOOOOOO!  (crying and incoherent screaming)
Mommy:  WE can’t drink the milk without a cup.
Ben:  NOOOOOO!
Mommy:  Ok then.  When you decide what you want, come and get me. (leaves the room)
Ben:  *sniffle* (rummages around in the “cup drawer”, grabs a cup and the milk and walks out to the living room)  More milk, mama?

aaaaaaand Scene!

This conversation, happens more times a day than i can count–not all about milk, mind.  Just insert whatever it is he wants to do, and that’s the Ben/Mommy interaction.   It’s a good thing i know my lines.

NOOOOO!  am i allowed to scream too?

And before you offer unsolicited advice commiserate, let me tell you kind reader, that i have recognized that this is his “i wanna do it” phase, and i am very pleased we have hit it, because it means that he is continuing to grow and develop.  I just wish it came with some noise cancelling headphones and an extra liter of rum.

He has lately also taken to a little more violence–hitting and kicking and the occasional head-butt.  awesome. So, of course he’s hearing NO!  from us a little more as well.

It made me think of the people to whom I’d like to scream no! :

  • Anyone who sends us an envelope with the words “total due”
  • the creepy bagger at Ralph’s that just skeeves me out with his intense eye-contact
  • Badwig McMantits down the street who hollers at people to slow down, even if you’re driving the speed limit
  • Sarah Jessica Parker
  • the makers of Elephun and Play-doh  and any noisy fuckin’ toy that doesn’t have an off button!
  • Weight Watchers
  • Mommy & Me
  • and lastly, the jackass who didn’t know where they were driving this morning on Camarillo and was going 20 miles and hour with 5 people behind her and sporadic stopping.

You know, I would feel immensely better if i could just shout NO! at people.  No wonder Ben does it.

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Categories: Autism, parenting, Snark | Leave a comment

Inclusion Ain’t Just For Them…

I had fears when Benji was mainstreamed.  Multiple fears.  I worried about his acceptance.  I worried about his well-being.  And I worried about where he would fit in the grand scheme of things.

And in true homo-sapien fashion, I spent some of that time worrying about myself. Because I felt—rightly or wrongly—that I was gonna have to work twice as hard at EVERYTHING—keeping in touch with the teacher, supervising his access to the curriculum, and making sure his socialization was continuing to move forward. Because I knew that we were moving from a micro-managed world to the great melting pot of general education.

Now, I am in no way saying that the parent of a kid in special day has it easy.  Work is work, no matter how you look at it.  But once you get used to the insular world of  the SD (special day) classroom, it takes a great leap of faith that you will be able to manage your family as easily in general ed.

Example:  when Ben was in SD, i spoke to the teacher EVERY DAY—just by the nature of the class. Mostly because I had the luxury of picking him up daily.  And by picking him up, I mean I had to meet them at the class for him to be released to me.  At one point there were only 6 kids in the class.  So, of COURSE the teacher and maybe one or two of the aides told me stuff.  Every day was a “this worked, that didn’t, here’s what we’re doing” conversation, that allowed me to shape our in-home therapy program and the non-therapy time.  It was fluid and evolving.  If I had concerns, I voiced them THAT DAY.  If Ben was having troubles, we would troubleshoot and develop an action plan THAT DAY.  If he had the awesomest of most awesome days we would stop at the Ice Cream shop THAT DAY.  SD really helped fulfill my need to live in the now.

And, socially, there were fewer parents to know—and all of us with a similar track: to get our kids included and accepted by the rest of the world. Now,  I have established that I am not the most social of creatures, but I DO know how to be nice and make friends, and have been known to do so on occasion.  The phrase “you can be charming when you want to be” has been thrown in my face more times than I can count.  So when there’s only a few sets of parents with whom to mingle—my charm flows a little more graciously.  A month or two in, most of the parents know one another, partly from mingling, and quite often through organization through the classroom.  Benji’s last SD teacher even went so far as to make a phone tree so that those parents whose kids were bussed in didn’t miss out on our main socializing task:  PLAYDATES. While playdates are a nice diversion for kids in mainstream, they are VITAL for kids on the spectrum—to learn how to play either with one another, or at least in the vicinity, and to give parents a chance to discuss their lives with someone who understands their unique vocabulary  The friendships we build are strong—they are not necessarily passing acquaintances.  Honestly?  i still speak to a few of the parents, and Benji attends a totally different school now. important socializing playdates still occur—just not as frequently.

And Inclusion is…well, its a different animal.

While Ben seems to be fitting in just fine—well, fine enough—I am not.  The things that made me seem so with it and calm before among special needs parents, now stand out.

I helicopter.  I’ve had to for so long that it is a physical STRUGGLE to stand back and just let him play.  To lose sight of him on the yard.  Gone are the days of him reacting to others with rough tumbles running away because of this distraction or that.  On the yard now, he’s like any other kid.  Some kids like him, some don’t.  And I stand like some sort of awkward sentinel, still watching his every move.  Because that’s what I’ve HAD to do for so long.  I don’t chit chat with the other parents—not because I’m unfriendly (although morning me is HARDLY sociable) but because it’s distracting. When you’ve been on guard for so many years, relaxing just doesn’t come naturally.

And honestly—I don’t always have common things to talk about with other general ed parents.  Our kids’ lives are…different.  Not like ISraeli/Palestinian different, but I mean, it would be just as awkward if we were the member of some religious group that didn’t allow dancing or something.  Eventually, the conversation has the potential to turn awkward.

Now—to be fair—this is not always the case.  I’ve met a couple of parents that greet Ben’s noise canceling headphones and scripting with the single word question of  “autism?” and moved on to talk of their weekend plans.  I’ve also met some who were brave enough to ask the questions I see in some others’ eyes.  I’ve also heard stories about someone’s sister’s cousin’s neighbor’s kid—which I recognize as trying to understand or find common ground—and I just hope I don’t grimace when they speak to me

And I’m lucky to get the teacher’s ear when I can.  A comment here, a snippet there. In a class of 20+ kids, I cannot expect her to know every little emotion my lil grub had all day.  It would be a foolish and selfish expectation.  Logically, I know this.  But that doesn’t mean the habit built before is so easily demolished.

I do however have the luxury of a 1:1 aide for Ben, and she gives me the deets when it’s important.  But I try really hard not to inundate her with too many questions.

I am trying really hard to learn my role as “just another parent” (even if that is NEVER who I will be)

And before my detractors come in with phrases like “well, you can’t expect everyone to be nice—you expect too much” let me be clear:  I don’t.  I don’t expect the teacher to give me full parent conference style reports daily.  And i don’t expect ANY of the other parents to make friends with me.  And not because I’m not awesome.  I just know I only have so much emotional currency to make friends, and I always assume everyone else is in the same boat—whatever their situation.  I don’t just start chatting up people willy nilly because, that honestly annoys me a little when people do it to me, so I practice a “do unto others” thing.  NONE of these women have be be my friend.  NONE.  While it was pleasant to make friends with the other parents in SD I never expected them to be friends either.  Friendships with school parents is hopefully a pleasant side effect, but in no way does it make up the main focus of Benji’s academic career.

No—what i want to point out here is not that it’s hard to make friends, but rather moving from SD to Inclusion is a HUGE paradigm shift for the parent.  When we start our kids in school—usually in some form of SD, we have to adjust to it.  Unless we are familiar with it, we have to LEARN how to navigate that world. and  get used to the idea that it is just different—neither worse nor better.  We get a little spoiled by the insular world where we all have common goals and frustrations, and we learn to lean on one another, develop support systems and celebrate those things that may seem minor to the world outside.  With that in place at our backs, we are able to advocate and push our children to help them and make sure our they are accepted no only at home and at school, but  “out there” in the big bad world.  Like our kids, a routine is built to help us navigate the world, and that routine is comfy and secure.

But our routine has changed, and we have to adjust again. Ben adjusted in weeks.  Me?  It’s taking a little longer. I have to get used to “life like everyone else” even though, our lives never will be.  I think I will always be a different parent. Because, like my son’s autism, my difference won’t always be visible to the unwashed masses. Because among all the other parents waiting at the gate at pick up, I am like any other mom until proven otherwise.

Inclusion just isn’t for him, you know.  I’ve got to learn to navigate this world as deftly as my son maneuvers his way around the playground. I suppose I should adopt his fearlessness, but I really detest scraped knees and tetherball.  Perhaps I can find a nice reading nook where no one will bother me…

See?  Doomed from the start, I’m afraid…  😉

Categories: Autism, parenting | 1 Comment

Own It

As with most of my blog posts, this is something that has been sticking in my craw lately.

(yes, I am part hillbilly.  DEAL)

And while this applies to being a special needs parent, what I am writing about today also applies to being human.  As in homo sapien.  A part of the race of creatures controlling this planet.

Pet Peeve #8824:  Telling people how to feel.

It’s right up there with the phrase “you should”

Lately, as I read friends write posts about the R-word—a word I am now vehemently against using, contrary to my youth—I see the same response:  “YOU’RE TOO SENSITIVE”

When I see other special needs parents discuss their own feelings about their child’s disability, I see them met with “YOUR FEELINGS ARE ABUSIVE”

When I refuse to do certain “patriotic” things like say the pledge of allegiance because of personal, deeply held beliefs, I am met with “YOUR FEELINGS ARE WHAT IS WRONG WITH THIS COUNTRY”

And it is REALLY starting to annoy me.  That last nerve I have, the one that looks all raggedy and torn—these people are jumping up and down on it like a cirque du soleil dancer in a Vegas show. 

I get it.  We all have opinions of how we think the world should be.  For example, I’ve got this crazy notion that we should take care of our mentally ill and homeless, especially the veterans, instead of casting them aside because they don’t fit the perfect picture of society some have painted in their heads.  And I have another crazy notion that we should feed the hungry, even if they are making really poor life choices, because you cannot convince me that treating people like human beings will create dependency and laziness.

And as much as I may disagree with people who do NOT feel as I do, I do not tell them that what they feel is wrong.  I may question their actions, but I do not tell them that the emotions they feel—welling up from deep inside—are wrong.

(Although I WILL be the first to step in and tell them if their actions are in fact illegal or unconstitutional)

Debate is NOT about all of us thinking and feeling the same thing.  Debate is SUPPOSED to make both sides think and reevaluate our own point.  But no one is going to be willing to examine their own beliefs if someone else says “well, you should think this”—in fact, nothing will make me stick to my guns more fervently than someone TELLING ME WHAT TO THINK/FEEL instead of defending what they think/feel with their own stories.

For some of you, you know what this is.  It is what Paul had in mind when he called early Christians to witness. (not knocking on doors telling you that you are going to hell unless you read a pamphlet)

You might say, I’ve held this belief for SOME TIME.

Feelings don’t come out of nowhere.  They come from experience and hopefully thought.  Sometimes they are passed down to us from parents or community.  When we all agree to hold certain beliefs—like say,  not butchering dogs on the front lawn—it creates a sense of community.  But even those beliefs have to be owned—not just taught.  I don’t butcher dogs on my front lawn because a) my neighbors won’t like it, but ALSO because b) it is not an activity I could stomach because of my love for dogs.  See?  Public and personal views. No matter the views taught to us, there still comes a point when we  must own them, that we can say, THIS is what I believe, and know it down to our gut.  That doesn’t mean it’s unchangeable—it simply means that we own it.

We don’t all have to have the same feelings or emotions or thoughts to get along.  My own husband and I vary greatly sometimes in some of our beliefs.  I am a big proponent of non violence—am against the death penalty and war.  My husband’s view on non violence is not the same.  And we are both aware of how the other feels.

And yet here we are, happily married, raising a child, living under the same roof, with respect for one another.  because we don’t dictate to one another how to think or feel.  We use crazy phrases like “I don’t agree with that.” and then proceed to have dinner.  I’d like to think that I’ve shaped some new views in him.  He hasn’t been so successful in raising any bloodthirstiness in me, but we’ve only been together 11 years…

Now—allowing people to think or feel as they wish can certainly bring about uncomfortable moments.  But this is part of the human experience.  Those moments, as ugly as they can be, shape who we are.  Perhaps someone is explaining why using the R word is hurtful.  And you find that you disagree with that because you think that being able to use words is a freedom you should be allowed to express, even if they are hurtful. when you find yourself disagreeing with folks, that’s a great opportunity to examine WHY. Because it is within THAT examination that our character is formed and continues to grow.  I will admit, when the accusations of being “too sensitive” about it pop up, I examine myself.  Am i making a mountain out of a molehill? And I look to my core beliefs, and I realize I am NOT too sensitive, and that we are fighting a battle for a paradigm shift.  And then I “witness” my own beliefs and from there can only hope you will examine your own.

Because that’s the thing.  My job is not to get you to change your mind.  My only job is to make you think.

So, stop telling me HOW to think, and give me reasons to THINK FOR MYSELF.  I will be more apt to listen to you if I think you have some respect for my humanity, than if you treat me like a child without any life experience.

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