A Reason To Get Riled Up

I will admit.  I’ve shied away from the Autism community of late.  One controversy after another.  Division.  Name calling on all sides.  An unwillingness to see a situation from another’s view.  More name calling.  Some serious name calling.  Accusations of this or that leading to even more name calling.

Who needs this, right?  I came into this world as many parents do.  My kid got a dx and I had questions and thoughts.  I had family and friends who didn’t understand, and I wanted to make a world in which they, and others felt more comfortable asking the questions they weren’t sure they could ask.

I wanted to create a place where parents also new to the dx would have a safe place to ask questions or ust share a frustration or two.

And i tried to bring it all with my brand  of humor to let people know that our lives were NOT, in fact, anything resembling a tragedy.

And as my kid grew, so did awareness. And then there weren’t as many questions.  And there were more prolific bloggers with much larger followings answering those questions, being much funnier, and I felt like my ramblings were just preaching to the choir, or that my humor was just hackneyed and stale, and with the exception of an occasional diatribe, I pretty much bowed out.  And no one missed me.  And I was genuinely ok with that.  The market was saturated with well honed voices with whom I was in harmony.  They were fighting the good fight and I was/am happy supporting them.

Because honestly my fight had changed a little. I was now focused on two things:  making sure I was

  • a) raising a kid who was well-mannered and caring, while still being himself, and
  • b)helping others understand kids like him to fight the horrid bullying statistics that haunt me every day.

So I continued to teach my son about being a gentleman, and how to tell knock knock jokes, and I make an effort to talk to other parents in his class, and anyone else who will listen, about how he is just another kid, albeit quirky, and wouldn’t your kid benefit from knowing such a handsome guy?  Ok—maybe I don’t sell him so hard, but I make an effort to show he is fantastic kid, worthy of play-dates and good times.  Ignorance breeds contempt—so I educate, educate educate.    This is what I consider my job as advocate to be for him at this age. (besides getting the services he is allowed by law, etc)

And with this new focus, all the autism issues that get folks riled up kinda just fell by the wayside.  And I left others more willing to jump into the fray to get involved and make their arguments.  I embraced the old Polish Proverb “Not my circus.  Not my monkeys”

And then in the last week or so, the media has really gotten under my skin.  And I needed to stop and examine what was bugging me.  What it was that was getting me all riled up:

  • Why did I give a shit what PETA was doing, portraying Autism publicly with pseudoscience and a very visual image of a sad face?  They’re PETA for chrissakes.  Of COURSE they were gonna do something stupid, garnering lots of media attention.  That is their fucking business model.
  • Why was i surprised at the Washington post and their click bait sensationalist headline linking autism and mass murder—when that very article points out that all the evidence was anecdotal and weak.  Of COURSE they would sensationalize it.  Print is dying—they need publicity. The ethics of journalism is hardly something we recognize anymore.
  • Why did my anxiety shoot up when, in the light of ANOTHER horrible gun-violent tragedy, a lawyer who knew the perpetrator HAD to point out the shooter had Aspergers, among a host of other issues, that really had no real link to the actual violence he perpetrated.  OF COURSE he did.  His job was to offer excuses to a society demanding answers to something that makes no rational sense.

 

So, why am I riled up NOW?  When I understand why each of these stupid things happened.  Not excusing them in any way, but cynically understanding how fucked up we’ve become that these things just seem to make sense in their own perverse way?

It’s simple:  because they get in the way of my new focus.  Not the raising of a cool kid part—but the helping others UNDERSTAND him part.

My hubs and I—we worry about how Ben will be treated.  we worry about other kids being mean, to the point that we’ve already discussed HOW we will deal with it when it occurs.  Which says a lot that we just assume it will happen. So when the media steps out and starts portraying Autism in this horrid light, as something to pity, as something to FEAR, it makes my job as advocate harder.  Because even if people see this stuff and think—eh, it’s JUST the media being the media—it plants that tiny seed of doubt.  It puts in the back of their mind links between autism and violence, even though people with autism are more likely to be victims of violence instead of perpetrators.  It might make them wonder in a quiet moment about whether or not my son is a worthy friend to have for their child. And with all those seeds,  it wraps him in up in a much larger, more visual label of OTHER.  Which honestly scares the bejeesus outta me—because as a historian, I am KEENLY aware of how easily a society can write off an “OTHER” without batting an eye.

So yeah, you might see a few more shares from me about issues that you think aren’t important.  That I’m just being “butthurt” about some other stupid thing that doesn’t really affect your world, and even think that I’d be happier if I’d just let this shit go.  But I can’t continue to let it go and hope that it will right itself in time.  I can’t continue to ignore the fact that society is being shaped and guided by a media that thinks nothing of creating links between events that do nothing but damage my son’s chances.  Because the fight I fight?  it isn’t FOR me.  It’s for that very cool kid with a heart as big as anything who is just as worthy of a fair chance as anyone else’s lil snowflake.  And even if you think i’m shouting at the wind, at least the wind can hear me. And maybe others will too.

Categories: Autism, parenting | 5 Comments

Permission

Parents.  I want to tell you something. You know what you’re doing.  I believe in your own parental instincts.  I know you know what to do.

I just felt like this needed to be said.  Because everywhere I turn willy nilly, I see articles with “10 things you shouldn’t say” or  “10 mistakes  you are making” or “10 ways you are scarring your children for life and they will never forgive you no matter how much therapy they will go through”

You are better than this fear-mongering.  I thought you might just need to hear that.

I’ll be honest.  I don’t read those articles.  Because truthfully, I am aware of EACH AND EVERY MISTAKE I MAKE.  And I beat myself up for them on my own time, thank you very much.

But those mistakes are not based on an internet article, or a magazine, any therapist or teacher, or even whatever my great aunt Magdalena might think about how I’m raising my child.  No. I base these mistakes on what my CHILD and my HUSBAND thinks—because in the grand scheme of things parental, these are the only opinions that matter.

Now, I think it goes without saying that I am NOT talking about things like abuse.  Because OBVS, when it comes to hurting a child, EVERYONE’S opinion matters.  That’s why we have laws.  But those parenting articles aren’t talking about that, and we know it.

See that tired lady there?  I KNEW NOTHING.

See that tired lady there? I KNEW NOTHING.

No.  They are talking about food, and sleep, and how we “entertain” our kids.  They talk about being strict, or not strict.  They talk about schedules or free range parenting.  In fact they talk about every damn aspect of parenting—so much so that if you read it all you would be in the same damn place you were when your lil larvae popped into the world.  KNOWING NOTHING AND EVERYTHING.

Look.  We are grown. And being grown means we get to make our own decisions, AND MISTAKES.  You have permission to make mistakes.  In fact, I would step out on a limb here and say the mistakes are more important.  As long as you learn from them.  But there is no way you’ll ever be a perfect parent.  At some point you will disappoint your kid—because you are human.  And you know what?  They learn from that too.  Any person you know that feels they have the best damned parents EVER, can probably tell you with distinct clarity the moment they learned that their parents were HUMAN.  That’s the beauty of all of this:  you all get to learn together.

DSCF1644_thumb.jpgI don’t want my kid to worship me.  I don’t want him to put me on a pedestal as the perfect mom.  What I do want him to see is that I tried my very best,  that I tried to act with honesty and integrity when it comes to him, and that I am a bastion of support whenever he needs it.  That I respect who he is, and let him grow into that.

I do that by listening to my gut, keeping in tune with my son and husband, and learning from my mistakes.  And if i have questions, I ask. And I don’t read articles meant to make me feel like a failure from the get go.

Everything else—the feeding, the activities, the electronics, ALL OF IT, is subject to our current environment and situation, and is REALLY no one else’s damn business.  Yeah, I may judge other parents —but  you know what? That’s MY own weakness of character, and has nothing to do with how you parent, but rather how petty I can be.  And I own that 100%.

So parents, just BE.  Listen to your inner goddess, or instinct, or even the spirit of you great aunt—but I  challenge you to let the decisions you make be YOURS, based on your own knowledge and experience, (with a care for the safety welfare of those around you, natch). Remember that people who write articles are trying to get people to read their stuff. And that some of them are more concerned with ratings and links than they are about common sense and trust. Moderation and common sense hardly attract advertisers or followers. (if it did, i think our politicians would be A LOT different—but that’s another subject altogether, right?)

20130722_140031 Hear me: I trust you.  I trust you to do the best damn job you can do.  I trust that you know what you are doing.

Because the more we treat adults like ADULTS, the more those who are falling short will rise to the level of expectation.  I believe that more than anything i know.

 

And for the record, i don’t care about shares and link backs and the number of people who support this page.  I’ve never been a big name with tons of followers, and i doubt that will change any time soon.  I just want at least one person—any person—to know that someone out there trusts that they are a good parent, whether your kids eat hot dogs every day or is watching You –Tube right now (like mine).  You know.  And you’ve got this.  Continue to grow!

Categories: Uncategorized | 7 Comments

Throwback Thursday! No, No, NO!

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

****************************************************************************

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.

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.

Categories: Uncategorized | 2 Comments

Until It Really Hurts

I am a student of social studies.  History, government, economics.  When i taught, there were basic lessons that i would often drive home to my students as they repeated themselves in history.

  1. hungry people will mess your shit up and
  2. those in power ACT when their earning are in jeopardy.

There were a few more lessons in there, but these made up the core of my teachings.

Now, I am no longer a part of the education community, but it doesn’t mean I don’t like to pontificate from time to time.  I mean HELLO.  I HAVE A BLOG, FFS.  You can take the teacher out of the classroom, but you can’t stop the egomaniacal need to hold people hostage with the sound of our voice…  or something like that.

Anywhatzits…

So, Disney.

YEAH.

The new disability process went into effect on Oct 9.  And a few autism parent bloggers and friends with season passes have hit the parks to check out how it works for our kids.

And it doesn’t look good.

As any good teacher, let me start with a review:

IMG_20120229_133908 It used to be you could get a GAC to help your special needs kid (or adult) maneuver through the park in a fashion that would allow everyone in your part to enjoy the park on your terms.  I explain the old process here.  And while it worked for MANY if not all of us, it was also open to flagrant abuses—some of which made stories on the Today show—which we all know is a BASTION of unbiased, informative NEWS. (insert eyeroll here)   Anyway, once stories of the abuses came to light, so did the patience of those who did NOT have access to the special passes—and cries of “unfair!” arose. (and can I say we all knew about the abuses—those of us standing in those lines WITNESSED IT but had no idea what we could do about it other than waggle our fingers at those wayward teens.) So a new plan arose that makes our kids go and, in a sense, get special fast passes at each ride (WDW) or at special kiosks (WDL) so that our kids get to see the ride, but don’t get to ride right away.  They have to wait the current wait time—just not in a line—until they come back to stand in the fastpass line. (or the handicap access line, depending on the ride).  And once it was announced the interwebs blew up in attacks that this would be more fair because we were obviously just abusing the system.

And our kids bore the brunt of those attacks.

I know I’ve been questioned.  Why does YOUR kid get to get on the ride right away when we don’t?  Why does YOUR kid deserve special treatment?  My kids has been called a privileged brat by internet trolls.  My kid—whom they have never met.  Who may never hold a job, or leave home, and who will have to fight tooth and nail for every thing in life because others can’t SEE his disability.  My kid, who doesn’t have a mean bone in his body, and who would more than likely try to be your friend, even if you are mean to him.  My kid who works EVERY DAY to understand and navigate this world that will refuses to give an INCH for him, but for whom he must change everything about himself in order to “fit in”  ASK ME AGAIN WHY HE DESERVES IT.

But I digress…

Because here’s the problem.  No one questions the rights of those in wheelchairs, like my own dear Aunt,  to have access to the handicapped lines. In fact this account of a recent visit even says that they witnessed people in wheelchairs pretty much having instant access as they did before.  But our kids—whose disability may not be 100% VISIBLE–are questioned at every turn.  That same blogger even mentioned that she had to announce his diagnosis more times on her visit than she ever had before.

So, in a sense, we have to “prove” our kids disability again, and again and again.

Ad we have to pay $75 per family member for this?

Now that same blogger actually had a good time and the system, while setting off a few privacy red flags, pretty much worked for them.

And to be honest?  It would work for my family too.  My son is what some would call “high functioning”—which is to say I can “reason” with him,  he can voice his frustrations without meltdowns (after years of hard work, I might add), we can have conversations about what is going on, and I can use every tool in my ABA and Floortime toolbox to help him navigate a system that, to be fair, is still working it’s kinks out.  Disney’s new plan does not remove it as an option for us behaviorally.

It is, however, off the table for us.  Let me tell you why.

While this system would eventually work for us, there are many families (some of my son’s friends even) for whom this plan will never work.  For whom the back and forth from ride to wait time is just NOT a viable plan.  Kids and adults who cannot just be told they can come back later and hey, let’s go have a corndog.  Because our kids perseverate.  My own son, whom I have claimed can handle this—when faced with a similar scenario at the opening of the Cars Ride at CA Adventure, spent the 90 minutes we had to wait FREAKING OUT.  Even though I was doing everything in my power to distract him, he spent all that time perseverating on getting back to the ride and riding it—which means he did not enjoy ANY of the things we did in that time.

This is what some (most) of our kids deal with on some scale of intensity.  DAILY.

But while my son has the ability to voice his frustrations, others cannot.  And the frustration they feel can physically manifest into a meltdown.

This perseveration can also manifest into the need to ride the same ride OVER and OVER. Or a number of times within the hour.  I’ve heard of some families that ride the same ride 5 x in one hour—and that’s pretty much the only ride they hit while they are there.

These families, although given lip service by Disney in a letter saying they would work with families on a case by case basis, are in fact NOT getting that and told repeatedly that this is the new system.  Even though they are told they want feedback—this one blogger had all of her ideas shot down.  That’s not listening—that’s patronization.

So, even though my family is in a position, both geographically and financially to purchase season passes, we won’t.  Even though this new system would probably work for my child, we aren’t going.  Even though my son really loves Disney, we are not going to spend ONE DIME on the park, and try our damnedest to not purchase any merchandise from the company.

Now, one person refusing to buy Disney products is hardly going to make a dent in third quarter profits.  I get that.  But the fact is, I cannot spend any money on them while they continue to disenfranchise the one group that would support them into eternity.  Our kids tend to LOVE Disney stuff.  I can’t begin to tell you how much Cars paraphernalia is in my son’s room.  Not to mention the fact that many Disney stories tell of characters who are deemed “different” and yet rise above the beliefs of others to achieve great things.  HELLO?  Symbolism, PARTY OF US.

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Just not worth the ears, kid.

And you may be thinking, Why punish your son because of this?  What are you teaching him?  I’ll tell you what I’m teaching him.  I’m teaching him to stand up for those who do not share our privilege.  That it is the role of those in power to help those who do not have it.  In the old days it was called Noblesse Oblige.  We are OBLIGATED, as people who see the injustice, to stand up and try to make a difference.  Even if it means never going to Disney again.

And if anyone doubts our resolve, I have not stepped inside a Wal-Mart for 20 years.  Even when our family was in difficult financial times.  RE. FUSE.  Because I see their injustice as clear as day.

Now, before you start trolling me, I’m not calling on any other person or family to make this same decision.  Because that isn’t my bag.  I am just going to witness, quietly, by doing my best to live a life that matches my ideals and conscience.  If I am the only one, well then, Disney won’t give a rat’s ass.  And they will go on being a corporate entity that continues to feed this national idea that invisible disabilities don’t matter.

But I have a feeling I won’t be the only one. Disney has lost a lot of Autism business with this decision.  (and business obviously means a great deal to them since their ticket prices are so extravagantly expensive)  And hopefully, it will affect their profits just enough that they finally live up to their promises to accommodate every special needs family.

In the meantime, we’ll be heading to another theme park that understands the autistic mind… Legoland anyone?

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BUTTONS! TO PUSH EVEN!

Categories: Autism, parenting, Sensory issues | 27 Comments

The Ausome Elite

So, this latest story about Disney and the change to the Guest assistance pass has been making the rounds of the interwebs.  I have hesitated writing about it because there were those with a stronger voice who were doing a much better job.  And to be honest?  It’s not going to affect us as much as some others.  In fact we are working on “line waiting” in ABA, and maybe, in about a year, he might be able to handle the new system.  But I fully support those families that are not in our shoes, for whom this new plan will NOT work, and for whom a trip to Disney is now off the table.

But what I DO want to address is this idea that I unfortunately read (and experience) that we are living some sort of privileged and elitist lives as parents of a special needs children.  That apparently the  REAL reason many parents are outraged  is because we want “preferential treatment” because we are “too lazy” to actually parent our children.

Yup.  You’re on to us. I was just thinking this morning as I sat eating my bon-bons and watching my stories how HARD my life is, and wondering what i could do to make it easier.  Even though right now my life is made much easier in SO many different ways.  Let me give you a glimpse into this amazingly elite life:

  1. Where we live is no guarantee that my child will attend the local school. Oh no!  We get to have special meetings with tons of paperwork in which EVERY. SINGLE. ISSUE my son has is hashed out over a table and every deficit discussed until we are exhausted with eduspeak.  Some even get the privilege of fighting tooth and nail  and hiring lawyers sometimes to get the schools to actually obey the LAW and make sure our children get the education promised to them.  Not to mention all that extra face time some of us get with teachers, aides and administrators!  why, they don’t hesitate to tell us everything our kids did wrong!  They are like the paparazzi of bad news!
  2. When my child has a meltdown or an issue in the grocery or any other sensory laden disaster zone, our parenting is immediately called to question.  And if we should even ATTEMPT to explain our special privilege, we get joyful accusations of being too lazy, or told to keep our children out of the public if they “can’t behave”—told of course by the same people that our children “need to learn to behave in public” according to the “social contract”.  See?  We get the bonus privilege of having to solve basic hypocrisy! Sweet!
  3. If I should mention one IOTA of frustration on a bad day, my ability to parent a special needs child is called to question—hell, now even the safety of my child is brought up because there are those that think a bad day equals wanting to harm my child.  Or at the very least, that my language is abusive and shows how much my ableist bias is showing, and that I must resent my child.  So I get the very distinct honor of either watching every word I say OR taking it on the chin from every side.
  4. While other parents enroll their kids in dance or karate or gymnastics, I get the privilege of being told they can’t handle my son, or that I need to provide an aide, paid for from my own privileged pocket, to help.  Instead of the just so common practice of popping down to the Y and signing my kid up for “just work the energy out of him PLEASE” class A, I have to talk to each of the instructors and gauge their attitude toward children on the spectrum—since by law they can’t deny me, but that doesn’t mean they can’t be a dick.  And if I’m lucky, I get to watch an instructor ROLL THEIR EYES as they have to deal with my son.  I cannot BEGIN to tell you how self important that makes me feel.
  5. Some of our parents are in a REALLY elite group.  Their children just don’t sleep.  They get to spend their days punchy and irritated because they are surviving on a few hours here and there.  (I am sadly NOT a part of this group, but I can dream…)  Oh, the privilege of being absentminded and exhausted ALL THE TIME.  Gosh. If only, huh?
  6. We get the distinct pleasure of not being invited to birthday parties much, if ever.  Who needs games and cake and bounce houses and friends when we can spend our day at home lining up hot wheels cars?
  7. As they get older, what fun!  Bullying!  Our children will more likely be the target for a bully than most other children.  That really IS elite. Why it makes me break out in hives just thinking about it!  I can’t wait!
  8. And let me share our dining out experiences!  Not only are we often placed somewhere in the back where we won’t disturb anyone and can often be forgotten by the wait staff, but sometimes we don’t even get to eat and have to leave because they changed the menu or there was a clown or someone sneezed too loudly!  What a fun game to get settled in  and ready to eat, only to pack up quickly while your child is screaming ad having all the patrons looking at you in judgment!
  9. Have I mentioned the writer’s cramp?  Oh, the joys of becoming your child’s personal administrative assistant.  Filling out this form and that!  Quite often with the same information!  Oh, and the evaluations!  remembering your child’s agpar score isn’t something every parent has to do—only those of us in the core elite!  I only wish you could experience the Vineland which drives home EVERY. SINGLE. developmental milestone your child has missed.  Most of us get to fill that our every other year or so—unless we apply for something at a new agency!  Then we get to do it again! Bonus!
  10. We are so lucky to get to work first hand with insurance companies as we work with Medical specialists and therapists to make sure our kids get all the special treatment they are entitled to.  Like speech therapy and trips to the neurologists!  How special it is that we get to spend so much time sitting on hold trying to get treatments approved.  Muzak versions of “Horse with No Name” and the entire Yanni catalog.  It’s like the special soundtrack to our lives.

So yeah, it is a pretty elite group.  There’s so much more here I didn’t even address, because I wouldn’t want you to develop too much envy.  But I must say, all of these special treatments pale in comparison to the anger and idiocy thrown in our direction when we dare to stand up for ourselves and our children.  Gosh—the name calling alone is worth every minute.  I only wish you could experience just a day of this sort of privilege.

Really.  I wish you could experience a day—because then you might achieve the one special thing you CAN gain from such an experience:  COMPASSION.  Even I, whose family will not really be too hindered by this Disney thing, recognize that some families are now shut out from the happiest place on earth.  Because what being a member of this elitist group has taught me is that we have to learn to look out for others and  not just ourselves, because we are in this together, like it or not.

Now , if you’ll excuse me, I need to go shop for overpriced sensory gear labeled for “autism”  while I sit on hold with the insurance company.  I hope you’re not too jealous.

Categories: Uncategorized | 16 Comments

Forced “Inclusion”

I read a blog a while back that called inclusion a grand social experiment.  That idea struck a nerve in me so deep that I’m surprised there wasn’t a loud “CLANG!” when I read it.  So, it’s little wonder that I look upon the schoolyard as a giant Petri dish.

(seriously, these kids are germs on wheels)

Anyway, what I mean is each morning when I walk my kid into school and watch him run off to play on the yard, it really does feel like a giant science experiment, and i keep looking around for men in white coats and clipboards and deadpan faces collecting data and making hypotheses.

I’ve mentioned before that Benji has some trouble socializing and playing with other kids.  Not a ton of trouble, but he requires a little patience sometimes.  He gets super excited around kids, and he doesn’t always know how to play nor know all the social cues the kids are giving him. He tends to forget all the things we work on in this therapy and that.  But he tries, people. HE REALLY TRIES.

And as painful  and awkward as it can be for  him sometimes,I try REALLY HARD not to helicopter too much and let him just go. And most mornings it’s good.

But sometimes its not.

The other morning, he was trying to play basketball with some other boys and there was an “incident”.  Benji was trying to pass the ball—but he’s a little unfamiliar with basketballs and passing and the rules in general, and he passed the ball right to another kid’s face.  And before I could get over there to stop it, the other kid pummeled Ben with the ball.  A few times.   Once I was able to break  it up and forced apologies out of everyone involved, the bell rang and the event was over.

(well the kid in question dragged his mom over to try to give my son a talking to, but I put the kibosh on that RIGHT quick.  Because trust me, Ben was sorry and was very upset that it happened.  I know this because after the kid left, Ben told me, tearfully, that he “wanted to be good”—which broke my fucking heart, people.)

Anyway, like most schoolyard incidents, it’s been put aside for other things, and other games, and maybe a little sadly, Ben avoids the basketball court now.  Partly because he has fallen in love with handball, but partly because the kids won’t really play with him.  And I don’t think it’s grudge holding going on there.  I think it’s a simple case of Ben doesn’t know how to play, so they don’t invite him in. Although the fact that he beaned a kid in the nose doesn’t help.

Anyway—I was talking to the resource teacher about this and mentioned that they didn’t play with Ben. And she said—“Well, we can make them play with him”—as if that were the most natural solution.

And it really rubbed me the wrong way.

I get that inclusion means that neurotypical kids are exposed to different need kids in the classroom—and naturally the hope and goal is that not only is the different need kid accepted, but that the neurotypical kids grow in their empathy and compassion.  And of course I want that.  Who doesn’t?

But is that going to happen when kids are forced to play together? Call me crazy, but I’d rather my kid be the one they “want” to play with and not the kid they “have” to play with.  In fact, writing that sentence just made me cry.

I’ve talked a lot about wanting compassion for my kid and others like him, but I cannot help but think this kind of thinking is only going to exacerbate others’ perceptions of his differences.  And I’m not saying I want those differences hidden—but you know as well as I that when people are comfortable with one another, the quirks of others melt away because we get used to them and accept them as part of who that person is.

I don’t know what the solution here is.  Naturally, I want my kid to be liked simply for who he is—and he does have a handful of boys and girls in his grade that seem to like him just so.  Hell, just this morning, one of them (the same one i wrote about here last year)  ran up shouting Benji’s name and giving him a hug. And naturally I want a world that will hopefully have just a smidge of patience for my son so that his natural strengths and talents shine through.  I suppose I just have the grand idea that this social experiment will make that happen naturally—and I’m afraid I am horribly naive in this belief.

What are your thoughts?  Is there a benefit in forcing kids to play together?  Or does it just widen the gap and magnify the differences that might later lead to more than simple exclusion?  Because that’s where my head naturally goes with this.  Is forced compassion just a natural fertilizer for the growth of a bully?  I honestly don’t know.  And I hate it that it’s MY kid that is the lab rat here.

 

[UPDATE:  Someone asked me on my FB page how the other mom dealt with the incident, and i realized i didn't mention it.  She was fine.  She asked if my son apologized, and i said yes, and then she told her son to go on with his day, that it was over.  She had no issues, as far as i could tell. I was putting the kibosh on having her bring it up again after it had been resolved (so that Benji wouldn't get upset all over again), and she agreed with that.  While it was an "incident"--it was pretty much also a "non incident"]

Categories: Autism, parenting | 11 Comments

Flashback Friday

I had to fill out a lil survey thing for Ben the other day and i asked him what his favorite subject was  in school.  He told me “Art”

for today’s flashback, an homage to my lil artist and how his brain works…

 

Scribbles (november 9, 2010)

I had a little moment today. Thought I would share.

Because we lack a magnetic fridge, I post Ben’s schoolwork on the pantry door. Right now it’s covered with work from last year, summer school, and a few items from this year. Today as I was making some tea, (Sadly NOT for a toddy) I turned and looked at one of his pieces from summer school. Its entitled Self Portrait.

Now, any 3 year old would have made a picture just like it. It’s a multitude of scribbled lines in multiple colors with no shape or reason. At the time he had no concept of the work “draw”–he’s just starting to pick it up now–and no idea whatsoever of “Self”. The ability to “draw” comes with time–typical or no. And as for the concept of self–well, he’ll get it one day. (hell, I’ve met some 30 somethings drinking cheap beer who barely had a grasp of it…) But it struck me this morning how this self portrait was a bit more true to life than imagined.

Lemme tell a story about the first time I saw a Van Gogh. (and don’t worry, this is not a preface to saying my son is an artistic genius) My mother and I were at the Getty, and we walked into a gallery that held one of Van Gogh’s iris paintings. Now, I’ll admit I’ve never been a big fan, but when I came face to face with this painting, I burst into tears. Literally. I am not shitting you. Tears streaming down my face. A blubbering idiot over a picture of flowers. Because in that moment–I got it. I understood his madness, his despair, his intensity. When you come into the presence (and I think you have to be right there, to see the color, the brushstrokes–a book just doesn’t cut it) of a Van Gogh, you suddenly see the world as he saw it–and it is so intense and maddening that, for me at least, it was too much. I have never forgotten that experience. At that moment, I understood all those damn art classes I had to take for my general ed requirements.

And today, as I stood and looked at this page, I felt it again. Ben experiences so much at once–his senses on overload, his mind racing from one thing to the next. All of it a blur sometimes, incomprehensible most of the time, a multitude of thoughts and emotions of which he cannot make sense. As much as this is the scribbles of a 3 year old who was told to draw himself–words he didn’t really understand at the time–he did create a self portrait. This IS my little man–in all it’s color and beauty, as well as its frenetic energy.

It was a fitting reminder to me today as we fight through this latest round of whining/growing/detox/general malaise that is being a child with Autism. I am finding that behavior can be cyclical. He can have weeks of fantastic behavior, and then a week of being demon spawn. Lately it feels like we’ve been getting the grand tour from Dante himself, but I know it won’t last. (at least I HOPE it won’t last) He’s had a rough couple of days, having given up gluten, probably going through withdrawals or he may possibly have a cold, or he’s hitting a growth spurt, or the time change has messed him up, or he ate raisins. As you can see, the reasons can be like his actions and subsequently, like this drawing.

I think when I start to remove things here in order to put more up, I’ll keep this one around. As a reminder to me of what it’s like to see the world through someone else’s vision–whether they realized they were showing it to you or not.

Categories: Uncategorized | Leave a comment

Wordless Wednesday

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