Another episode of "I Just Don’t Get It"

So, we had a lil incident last week that’s been rollin around in my mind/emotions/psyche for a few days. And part of the reason isn’t just because it was kinda ugly, but also because I really don’t understand.  Really.  I DON’T.

Long story short.  we were at the Y, my kid had to go potty, I took him into the women’s locker room and was there accosted by an older woman who was “mortified” that my son might see her in her post menopausal glory.  Which honestly *I* didn’t wanna see either, but that’s another story.  She did not accept my gentle excuse that my son has autism and couldn’t manage the male locker room–WHERE HE HAS ACTUALLY NEVER BEEN–by himself.  Also, he’s 6.  SIX.  As in JUST OUT OF KINDY.  SIX.  pre-pubescent.  VERY pre-pubescent.

Amidst this brow beating, she mentioned she herself has an autistic son. And would I be ok with his 21 year old self coming in here? to which I replied “*I* don’t have a problem with it”

And here’s the thing.  I really don’t.  Nudity doesn’t bother me like it bothers others.  I helped support myself through college sitting for art classes.  YES–THAT KIND OF ART CLASS. Maybe I’m just a hippie, but all this nonsense about separate bathrooms where children are concerned seems so silly to me.  Yeah–I understand the whole older man/teen girl or boy thing, and I won’t deny that there are some serious pervs out there in the world.  But this was NOT that situation.

As a woman, I wouldn’t care if a boy from the ages of newborn to preteen saw my naked body if I changed at the gym. (which I don’t actually, not because of propriety but because that locker room is a little skanky to be honest.  That, and I’m usually wrestling a 6 year old autistic boy who’s upset about leaving the pool, so I try to get out of there ASAP and do the whole shower and change thing at home)  I’m also a firm believer that our obsessions with sexual segregation is part of our problem as a society.  If boys and girls saw the natural human form, in all shapes and sizes, maybe they wouldn’t grow up with such strong body image problems?  Just a thought.

But here’s another thing.  This outrage seems selfish to me.  Maybe because I was on the receiving end, but I still don’t understand. Why is it more acceptable to some that my son go into a male locker room ALONE rather than together in safety with me in the woman’s locker room?  Why is some woman’s sense of virtue and propriety more important than a child’s safety?  And I’m not just saying my kid.  Any boy.  Or any girl with her dad in the man’s locker room?    You know where my kid gets to go to the bathroom alone?  AT SCHOOL–because I know the school is 90% safer than some locker room in North Hollywood.

And before you shout “you’re just paranoid!”  let me remind you of this story.  A 9 year old boy goes into a men’s restroom in Oceanside while his aunt waits outside.  And he was murdered by a crazy man.  Oceanside aint’ far from here folks.  Pardon me if I’m affected by both the proximity and the horror of that story.

So, my son will be accompanying me to any and all bathrooms–unless his father is with us, natch–until he is old enough to call for help, and/or be embarrassed by being in a woman’s bathroom.  Or until more family bathrooms are available for use.  And if any old bat is worried about the virtue of her sagging tetas, she might end up with an earful from me…

Categories: Uncategorized | 48 Comments

Epic Summer of Epicness

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pre diagnosis. or post. Who cares? look at those cheeks!

When we were first getting Benji evaluated–way back before Autism was even in my vocabulary ( “but he makes EYE contact!”) I remember telling the speech therapists in my naive way that it was like there was some magic button in Benji that just needed to be pushed.  If we could just push that button, I believed, he would blossom and emerge.

We are four (FOUR?) years removed from that day, and I’ve since learned, as that therapist  so delicately tried to explain to me, that there is no magic button that will undo who my child is.  Nor do I long for that button anymore.  He has autism.  He will not “grow out of it” as some medical professionals (YES, THOSE KIND) suggested, nor will ever stop being autistic.  He might–MIGHT–learn to function in a way that makes people not believe he is autistic, but that really isn’t our goal here.  Sure, he needs to learn to, I don’t know, hold a job of some sort and take care of himself, but even with those skills,  he’ll still be autistic.  And I’m ok with that.   I’ve had four (seriously, I can’t believe it’s only been 4) years to really grow into this role of autism mom/advocate.  I get that his neurology makes him the perfect lil snowflake.  And I celebrate it.  Yes, even when he wakes me up at 6am on a Saturday just to tell me the date and what ever plans we have that day.

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The only kind of box i’m ok with him being in–since he likes to jump our and yell SURPRISE!

There are those that will always see his limitations–that see the label of Autism and think “oh” and put him in a box in their mind.  Some of those people are strangers, so I don’t care what box they put him in, since I put them in boxes all the time too–like “nosy bank teller”.  Some of them, however, are NOT strangers.  And as much as I’d like to shake them like a Polaroid picture, I just try to advocate, and make sure their box doesn’t limit who he can and wants to be.  That’s my job.  Some days I kick ASS, and some days?  meh.  I live in the hopes that those days even each other out.

ANYWHIZZLE, I’ve been noticing a few things this summer.  At team meetings, as we discuss strategies for working on behaviors, we’ve been letting things go, because the things we are talking about are very “typical”.  Now, I’m not talking about his perseveration on asking the same question over and over ad nauseam until I think I am gonna holler, or his rigid  obsession with everything calendar/time lately.  No, I’m talking about how he’ll just give up easily claiming something is just. too. hard, or how he tries to wheedle out of things using his charm, how he refuses to try anything that looks REMOTELY like a vegetable, or the crocodile tears that come from getting caught doing something naughty.

You know, the kind of things most 6-year-olds are doing.

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kick ASS

This summer he is learning to ride a bike for the first time, going to the movies and taking a regular, no accommodations  run-of-the-mill gymnastics class.  And he’s succeeding. Maybe not in the way he is EXPECTED to succeed, but he practices his handstands every day.  EVERY. DAY. And he may sit in the movie theater with noise cancelling headphones on, but he sits through the movie, with very few disruptions.  And he is tearing UP the asphalt with that bike.  Yeah–that kick ass bike RIGHT THERE.

In fact his ABA supervisor the other day said “I’m excited for him.  I mean, he’s doing things boys just DO.”

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Candyland Card Sharp. And don’t even get me started on how he cheats at Uno…

And while I know that that button I so desperately clung to in the early days doesn’t exist, I do know that he has worked hard–HARD–for four years.  We have had–and still HAVE–all sorts of therapies, and teams, and team meetings and strategies, and accommodations that have gotten us to this summer.  No button may have been pushed, but gears have been ground, and levers pulled and latches unlatched and circuits built to get to this epic summer of epicness.

My kid still has autism.  You put him in a crowd of his typical peers, and it isn’t even in question.  A big green pea in a bowl of rice.  But this is the summer of chances.  Maybe it’s the times, or the autism publicity, or the dimply like look of charm he gives everyone, but boxes are being discarded and he’s really being given a chance. And he’s living a summer like any other kid on summer vacay.  well, any kid who keeps close track of the calendar, anyway.  With each activity, he grows a little.  With each chance, he emerges even more.

With each day, the need for that button disintegrates.  We’ve still got plenty of gears and levers and circuits to work on.  That should keep us busy for the next fours years at least. By then he’ll be 10,  (cue hyperventilation) and we’ll have a new set of challenges ahead of us.  But until then, I think we’ll enjoy epic bike rides and frenetic swims and trying 25x a day to do a handstand.  Likes boys (and girls) do.  Right after we write today’s date on the schedule.

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Categories: Autism, parenting | 1 Comment

Camp Typical

Summer vacation is upon us.  And it’s new for us this year.  See, since Ben got mainstreamed, he no longer qualifies for ESY (extended school year or SUMMER SCHOOL).  And everyone around us–therapists and the like nod their head and say, yeah, that’s best.

BEST FOR WHOM?

seriously–what was the point of these again?

As you can imagine,I am getting a little punchy already. I didn’t set up Ben for any day camps because he’d never been to one, and I had never seen how fricken EXPENSIVE they are.  Also, he still has at home therapy 3x a week, meaning we would have had to cancel sessions to make time for camp, and I thought the therapy more important than making God’s eyes and other faith based crafts.

As you can see, I have very little confidence in day camps, having spent an eternity in them as a child.

So I figured, HEY!  I have multiple degrees and an educational credential!  AND, I can craft like a muthafucka (I really need to put that on a t-shirt) I can ROCK summer vacay yo!

Here’s some of the Summer line up that would kick any church day camp’s ASS…

1) Chore time party

This summer, we’ve introduced CHORE TIME!  woohoo!  Making beds!  picking up toys!  brushing teeth!  What kid WOULDN’T want to get nagged all day to get their chores done? Like those little imps at Camp Tom Sawyer, this kid is gonna learn the value of doing the work ASSIGNED to you, so that even spinster Aunts can appreciate it. And with no other kids around, there won’t be some bait and switch like Tom pulled on ol’ Huck.  No Sir.  And pick up that sock!

it’s SO EXHAUSTING to enjoy a lovely garden.

2) Gardening!

Camp always comes with a chance to get back to nature!  Here at Camp Typical not only can you water plants regularly, twice on the really hot days, but you can pick up dog poop as a bonus!  You might even get an opportunity to view some of the local wildlife, like squirrels and crows!  And what summer vacay wouldn’t be complete without a bevy of bug bites and bee stings!  Take THAT  Zoo Camp!

3) Brain Expansion

Just because we’re not in school doesn’t mean our work is done!  Why, we have the Summer Vacation Homework packet to prepare for 1st grade math!  I mean, can you think of anything MORE fun than adding by tens?  I know I’m stacking up dimes in anticipation. And of course the summer reading program as well, with multiple trips to the library where one enforces rules like “calm body!” and “inside voice!”  SO much more fun than some stupid Science Camp!

4) Field Trips

Camp wouldn’t be camp without field trips!  Here at camp typical, we go to many exciting places here in the Los Angeles area.  Sure, we could go to Disney or LACMA or the Science center to see the Space shuttle–but how boring is THAT?  Oh no brave campers!  Get ready for the excitement of hitting the local Ralphs and Target!  Perhaps the garden center to replace the waterlogged plants being so zealously attended to.  We might even brave the parking lot from hell that is known as Trader Joe’s!  Adventure awaits intrepid campers!

5) Water play

What summer would be complete without a splash or two?  While the pool and the new water park/playland sprinkler thing/whatever the hell they call those devil playgrounds are fun for most kids, we’ve got it going ON here at Camp Typical.  Have you seen this hose?  HOURS of fun.  Not to mention a great time to develop independent play while mommy watches from the dry interior of the house.  Who needs sprinklers and slip-n-slides?  Why a hose and a tricycle and a frightened Chihuahua are enough to keep any child busy for hours on end.  And as a bonus, did I mention the wrestling fun of applying sunscreen before he heads outside?

6) Craft time.

Have i mention my crafting skills?  Legendary.  I don’t know why camp counselors are not sitting at my feet to learn from the master. We’ve got googly eyes and pom poms by the zillions.  And glue.  Five different varieties.  And a box of craft sticks waiting for their chance at faux Eiffel tower recreation.  Now just sit there with those items, son, while mommy scours Pinterest for a minute…

As you can see, we here at Camp Typical are ready to create a lifetime of summertime memories.  So that when the first day of school approaches in August, he will be SCREAMING to go back. Try not to be jealous fellow Special needs moms when you put your kids on the bus and enjoy a few quiet moments to yourself today…

*sobs in the corner*

When does school start again?

Categories: Autism, parenting, Sensory issues, Snark | 6 Comments

A Lack of "Understanding"

Last week, a tragedy occurred.  Alex Spourdalakis was killed by his mother and caretaker.  Alex was autistic.  He was 14 years old.

I wasn’t going to write about it. Others have written about it here and here with much more eloquence and cooler heads than I currently have.  I was going to skirt this one,  having written before about the media and social response to a mother killing her Autistic son. Because it has unfortunately happened more than once. This has happened enough that there are those who advocate for Autistics who really believe we want to harm our children.

But that maelstrom aside, I’ve been reading the comments (I KNOW, I know) on some articles here and there, and with a queasy stomach, I keep seeing the same statements and arguments I saw the last time this happened. 

  • “that poor woman”
  • “end of her rope”
  • “mercy killing”

You see, Alex was on the severe end of the spectrum.  And for some people, it seems, that somehow makes this OK. Or, my favorite way of saying that:  “understandable”

(BARF)

People with children say this.  Let me say that differently.  people with Neurotypical children say this.  People with children that have no differences say this.  People who do not face the judgement and isolation and downright bigotry of others toward your different child say this.

And they question those of us who speak up, who remind them that this was a BOY with a LIFE that was taken from him by being brutally stabbed.  Repeatedly.  They tell us we are too judgmental toward this woman, when they fail to even mention the son. 

They put themselves in the situation, and only see the hardships.  They think they could never care for a child with differences.

But you see, we live in that situation, and we don’t understand the choices. We face those hardships daily, and murder is never, EVER, one of our choices.

I’ll tell you why I struggle with situations like this–other than the absolute horror in a child being murdered.  I was raised to forgive those who do horrid acts like this.  In fact, I don’t even believe in the death penalty.  Had I even felt I had some sort of nunnish calling, I’d prolly be counseling those on death row like Sister Helen.  I was taught to treat with love anyone and everyone–for love begets love.  That’s not just a Christian value–it’s a human one. And I do whatever I can to try to cultivate it. 

And yet, I struggle with showing any understanding or kindness toward a woman who would do this to her own child.  And when I see people saying they don’t want to judge her, I want to scream at their hypocrisy, for I feel those same people would be swift to place the epithet “monster” on the Casey Anthonys and George Zimmermans of the world.

I struggle with forgiveness in this instance.  And instances like it.

For to forgive this woman and treat her with love would be like forgiving

  • Someone who kicks a dog on the street
  • someone who rapes a child
  • someone who places bombs in public places
  • someone who bullies kids into a gang and forces them to kill
  • someone who beats their spouse.  and children
  • someone who takes advantage of non-verbal children
  • someone who kills the homeless without regret
  • someone who kills. anyone. regardless of age, sex, ability

To forgive these women is to forgive ANYONE who feels they have the right to value and take a life based on their own fucked up reasoning.

I am all for forgiveness.  I carry within me an intrinsic belief that all people must be treated with respect and love–even those who have failed and fallen.  But when acts like this occur, and the arm-chair opinionists come rolling out, it is inevitable that words are said that devalue my own son’s life.  And it frightens me.  It frightens me more than any words I can spew onto this blog.  I recognize my fear is based on the fallacy of a slippery slope argument, but maternal fear is rarely based in logic.

So, if you want to tell me that it was “understandable” why she committed these horrid acts, then I need you to help me understand any of the acts I’ve listed above.  Because if you can “understand” away the horror of this act in any fashion other than devaluing the life of that sweet boy, then you are a better man than I, Gunga Din.

Categories: Autism, parenting | 12 Comments

Enjoy the Ride…

So we have come to the end of the school year and summer vacay looms like the Kalahari.  Not that I’m concerned about scheduling.   We still have at home ABA three times a week, we’re about to start horse riding therapy and we joined the Y, so the swimming.  It’s our first summer without ESY  (extended school year , or summer school) but I’m not too worried.

IMG_5007 Yesterday we had the lil kindergarten culmination.  I was pleased that it wasn’t a full blown graduation, because, well–those things go on FOREVER, and while it is an important milestone, I don’t think it needs caps and diplomas. But remember–I’ve got a kid with autism–you may see sweet ceremony, I see sensory nightmare. tomato, wankle-rotary engine.

(high fives any MP fans who just got that reference)

Anyway, they sang two songs had a lines and all the kids stepped forward to tell us what they wanted to be when they grew up.  a sweet lil 10 minutes or so.  All very cute.  And my boy was up there participating with the best of them.

And naturally, I was a snotty-cry mess.

If you had told me at the last preschool event like this that my son could do this without support or me standing there with visual cues/reward system, I would have given you the stink eye.  In fact, when the teacher told me he does just fine with these public events, I believe my reaction was gobsmacked disbelief.

Because what I remember is him REFUSING to participate, laying on the ground with his hands over his ears, screaming.  EVERY. TIME.

IMG_5008 Yes, time, maturity and proper modeling has been the key.  And, I will confess with some sadness, he DOES do better if I am not (or he doesn’t know that I am) there.  In fact, he was starting to meltdown yesterday before the performance because he knew we were going out for ice cream after and wanted to go NOW.  But once we were out of sight and he was with his peers, he pulled it together and really made it work.  And I became the one who melted down

The tremendous growth we have seen since he came to this school is amazing.  You will remember that I was terrified of inclusion, and there are certainly still moments when I miss special day with every fiber of my being.  Inclusion has been a roller coaster ride for me (and him) because it is a skip to the front of the line/feel ALL the feelings/sink or swim kind of experience. I am confronted with my son’s differences every day.  Even yesterday.  Were any other parents crying because their child was able to say he wanted to be SOMETHING when he grew up?  As in imagine?  Nope.  Just me.  Were any other parents crying because their child had speaking lines, AND SAID THEM at the right time?  Nope.  Just me.  Were any other parents crying because they knew there was a whole team in place, working together to make sure this kid could bring home a report card that was all 3s and 4s (new fangled grading system–proficient and advanced) and statements like “child has improved in ALL areas” and is an “enthusiastic learner”?

You know–the things we see at home, but it always feels like no one else ever does?

IMG_5001It’s still hard to see him on the playground, when kids are mean to him, or simply won’t play with him.  But it is equally comforting when I see kids that will take the time to include him and help him play.

I won’t lie.  I still feel very alone among the parents.  Part of that is certainly my own misanthropy and hermitude.  But there is also a lack of common vocabulary and experience that often leads to me having to “explain” or “educate” that is frankly a little tiring.  They talk about things like soccer and dance class, and I don’t have that similar language, because my language involves therapy and accommodations.  And I try to sympathize or laugh along, but I don’t know what it’s like to be in charge of the snacks, or to have to juggle those schedules.

Nor do they know what it’s like to have therapy 4x a week, working working working in order to improve enough to attempt those schedules.  Someday. Maybe. But I also recognize that our lives are similarly busy.

I was at at Autism parents meeting last week, and listening to the parents from special day class made me nostalgic and jealous.  All the while recognizing that my experience is also not like theirs.  For example, we were talking about bullying, and they weren’t really worried–because special day class can be very insulating and safe.  Yet, when I met eyes with the only other parent with an included child, I could see the worry that mirrored my own.  Our kids are in the thick of it, with targets placed firmly on every flap.  The parents from special day had worries that were not mine, but I had worries that didn’t even register on their radar.

A stranger in a strange land.

So you see what I mean when I say it is a roller coaster.  All I can do is put the lap bar down and hope the safety checks have been done to keep the train on the track.

Well, and to sometimes throw my hands up in wild abandon on the loop-de-loop.

IMG_4998I will give one thing to this ride–it has forced me into a far more authentic life than I would have imagined.  And while I still have not managed to learn to cry prettily, I am grateful for every damn tear.

So enjoy the summer y’all.  be sure to wear plenty of sunscreen and enjoy this camp or that.  We’ll be here, watching Youtube videos, creating visual schedules and playing in the sprinklers.  As one does.

Categories: Autism, parenting, Sensory issues | 2 Comments

The Happiest Place on Earth, FOR ALL OF US.

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Me, my mom and the boy at CA Adventure

There’s been a lot of noise lately about abuses of the system when it comes to the Guest Assistance Pass at Disneyland and other parks.  There was a story recently about rich people who hire someone who is handicapped in order to “skip to the front of the line”, and quite naturally, righteous indignation follow, even so far as to be covered by the Today show, bringing ALL SORTS of armchair know-it-alls into the conversation.  It has brought some broad generalizations about people who use this pass that have made some of my friends in the SN community a little nervous to even venture GOING to any park, worried that they will be given the third degree.

So I wanted to write a post to a) guide you through the process of getting a GAP, but also to set your heart at ease.  Our kids deserve to go to the parks as much as any other kid.  And while this recent spate of stories might mean you’ll have to develop a tougher skin when dealing with some guests, it doesn’t mean you shouldn’t go.  In fact, I think it means the exact opposite.  I think we need to turnout in DROVES to show how important the pass is.

It’s a little different when you or your kid do not have a “visible” disability.  I know I’ve run across kooky looks from eejits, no doubt annoyed that they have to wait in that CRAZY Storybookland ride line.  And I get it: that’s A LOT of people in a teeny tiny space for a boat ride.  But here’s the thing–they would be a lot MORE annoyed if my kid was SCREAMING behind them the entire time.  This pass isn’t a “perk” of autism.  It’s the only thing allowing us to actually GO to the park.  If we didn’t have it, I certainly would not mortgage the house in order to get tickets to the park in the first place.

Lemme lay out how the GAP(Guest Assistance Pass) works.

Before you go to the Mouse, or Legoland , or Universal or WHEREVER, look around on their websites.  It isn’t always visible, but there *should* be instructions for people with disabilities.  Don’t be discouraged if you only see wheelchair, deaf or blind information.  THOSE INSTRUCTIONS ARE FOR YOU TOO.

But in a nutshell–this is how it works in most parks.  Here, I’ll be talking about Disney in particular, but we’ve also been to Sea World and Legoland–but it’s been the same in each park.

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In Minnie’s house. He LOVES the “dishwasher”

When you get there, go to guest services.  In Disney, this is the Town Hall.  You’ll see people in line, possibly getting similar passes, or getting their birthday pins (I’ve never done that, but supposedly, if you go on your birthday, they’ll give you a pin that says it’s your birthday, and then cast members will say nice things to you all day).  Anywho–the person with the disability must be with you for this process.  You’ll go up and ask for the Guest Assistance Pass and explain what you need, I.e. my son doesn’t have the muscle tone to stand for long periods of time, or (like us) he cannot wait in a crowded line with so many people because it is a sensory overload.  There are a couple different passes–one for wheelchairs and one for alternate entrances.  If you or your child is not in a wheelchair, you will get the alternate entrance pass.   What this does is allow you to use the handicapped entrance on most rides, or the fast pass line on the newer rides.  This pass does NOT bump you to the front of the line.  Let me repeat that–it is NOT  a “FRONT OF THE LINE” pass.  You will have to wait.  Especially on popular rides.  I know Pirates seemed as long a wait as waiting in a regular weekday line.  BUT, you are waiting in a not-so-crowded area with a little more wiggle room, and generally, with other families just like you.  In fact, I was able to talk to a family once about noise canceling headphones and TRY them, waiting in line at the Casey Jones train ride.

Here’s the thing–you don’t have to tell the person at the desk ANYTHING, other than your kid cannot wait in line with a crowd, or doesn’t have the muscle strength to wait, etc etc.  I always tell them my kid has Autism, because it speeds it along.  I don’t HAVE to, but I do.  But you don’t need a doctor’s note or any sort of diagnostic papers with you.  Bring them if it makes you feel more comfortable (I did the first time) but by law, they cannot ask you about the diagnosis.  It is an invasion of privacy.  Their job is to “evaluate” the situation and make sure your experience at the park is top grade.  End of story.  The last thing Disney is going to want is a vocal parent telling news sources that they denied a kid with Autism a chance to enjoy the park.  Keep that thought in the back of your mind, and getting the pass won’t phase you.

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Can we ride the train? Again?

Once the pass is given, it will be stamped with the alternate entrance or wheelchair access and the cast member will explain how it works–sorta.  They don’t tell you the fast pass info.  I discovered that one on my own. But basically you provide the pass to a cast member at the front of each line and they will direct you to the alternate entrance.  with one exception.  if there is a minimal wait–they will usher you to the regular line.  Honestly, when we go, I think I use the pass only a handful of times and stand in the regular line the rest of the time (albeit, we go mid week and early morning to beat the crowds)  My son won’t go on anything too scary, though, so most of the fast rides are out.  But still–for most of the kid rides, we stand in line with everyone else.  I usually try to judge how long the line is and how many cycles we’d have to wait.  If it’s more than 5, I use the alternate entrance.  I know my kid’s limit–and you will too.

Because that’s the thing–this pass is supposed to make the day attainable and easier.  If anyone has to use it responsibly, it is US.  If you think your kid can wait in line like anyone else, then this pass is not for you.  But if you need a little bit of help, do not feel guilty about using it.  The pass is there to ensure that the accommodations you need are in place.  No different than an IEP.  If you need it, USE IT. Be the example of why the pass is altogether a good thing.

Back to how the pass works…

Some rides, like the Radiator Springs ride will issue you a handwritten fast pass and you will have to come back at  the time on the ticket.  I tell you this because THAT caused a major meltdown for my kid and he perseverated about it until we went on the ride two hours later (which he then hated because it was too fast and we’ve never gone on it again).  Consider that a head’s up.  if your kid needs priming about having to wait, be sure to do so.

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Fleeting moment of perfection! Thanks to some AWESOME and patient Cast members!

The one thing the GAP will not do, however is shorten your wait to meet characters in Toon Town.  We’ve met Mickey once–because there was no line.  But we’ve never been back–because the line is insane most of the time.  (we had gotten there when Toon Town just opened, so we beat the line)  There is no alternate entrance for the characters, so if you have dreams of getting pictures taken with Mickey–be at the Toon Town gate the MINUTE it opens. (usually an hour after the park opens)

Parades:  you will notice at certain times they will start roping off areas for parades. The wait between roping things off and the actual parade?  STUPID LONG.  And the parade is LOUD.  We’ve only waited for one (nighttime at Xmas) but the others we’ve just caught being at the right place at the right time.  If your kiddo can wait, you could cop a squat and have a snack, and you might get the reward of a good seat.  But if they cannot wait well?  Go do something else and have fun.

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Winter 2011

Other than that–the park is your oyster.  Enjoy it like all the other families do.  Eat too many sweets (although Disney AND Legoland are very good about GF options) walk till your feet are sore, spend way too much money on silly things and ENJOY YOUR FAMILY.  Don’t let the snooty looks of others ruin your day.  And if anyone has the BALLS to say something?  Well then, be sure to tell them about all the other “perks” of being disabled in this country, like having to deal with douchebags who have no CLUE about anything.  Don’t let the backlash of this current round of stories keep you from having an awesome time.  Because you and your kids DESERVE it.  They work hard ALL THE TIME(I know my kid has school all week PLUS four days a week of at home therapy, and some of you have much much more).  Take a fun day. Listen to your kid giggle.  Discover that moment of gobsmacked AWE when they see the castle, or Matterhorn, or even Mickey himself.  Don’t let a handful of selfish jerks ruin a chance to see you kids have the best time.  Go!  And smack Minnie on the ass for me, eh?  ;)

Categories: Autism, parenting | 12 Comments

Honoring Mikaela and Drew and Owen, and all the nameless…

This week, we lost another precious butterfly in our network.  Beautiful Mikaela Lynch wandered away from her family in a moment, and was found days later, dead.  I would love to say that in a nicer way, but there is a part of me so bothered and troubled, that I feel the need to say it plain and honest.

Because no one else is.

When I say no one else, I am referring to the media.  I an honored today to join an outpouring of support from other bloggers to embrace Mikaela’s surviving family with love.  Because they are in our hearts.  We mourn with them, alongside them. It could’ve been any of us.  It could have been me or you, waiting for news, hoping hoping hoping.

The thing about Special Needs parents is that we are quick to support.  We are a tribe, holding one another up in times of need.  Because we know there are those who will always be quick to tear us down on the slightest provocation.  All of us wish we were closer, to help this mom and family out, whether it would be by doing a load of laundry or two, bringing the proverbial casserole or just being there with a listening ear and a warm cuppa.  Our support in cases like this is unwavering.  Whether we are virtual neighbors or right next door.

What is disturbing me, beyond the sensationalist blame game that always seems to pop up around situations like this, is the real lack of media coverage.  When a typical lil white girl goes missing, FB is plastered with it, it’s all over the news, we see her face again and again and again.

I mostly saw Mikaela’s face on FB pages of other special needs families.  When I was talking to our ABA therapist the day she was found, our therapist hadn’t even heard the story.  And we live right here in CA.  While not local, it SHOULD have been more present in our local news, IMO.

We need to change our ideals, y’all.  We need to stop following the hype of sensationalist nonsense like someone’s pregnant feet and start paying attention to the things that matter.  We all need our hearts to stop and our love and prayers to fill the universe when one of our lil butterflies goes missing, special needs or typical.  And we need to take seriously the dangers that surround the wandering issues of Autistic children. Special Needs amber alerts, Big Red Safety tool boxes, GPS tracking systems, tools for law enforcement–ALL OF IT.  We need parents of typical kids to stop ignoring this because it doesn’t apply to their kids–BECAUSE IT DOES.  If we cannot protect those that need our help the most, how can we help those next in line?  We cannot ignore this problem away.

Please take a moment to send love–pure and simple–from your heart to the family of Mikaela Lynch.  And then take a moment to send out more love to the family of Drew Howell, and Owen Black, both discovered just this weekend, having wandered away only to be found dead, both in bodies of water.  This should be evidence enough that this is a real and legitimate problem in our community, and we need the communities around us to take it as seriously as we do.  Please.  I am begging you.  Pay more attention to the news that matters and not what some knucklehead has to say about nothing that matters.

And then hug your kids.  And go over safety issues with them.  Again.  Even if they roll their eyes at you.  And then talk to your neighbors.  Community building.  We needs it.

Rest in peace you sweet butterflies.

Categories: Autism, parenting | 7 Comments

Enough with Awareness. How About Autism compassion?

Yeah.  It’s April.

I tend to struggle around this month now.  When I was a noob–that is a parent of a newly diagnosed kid–I was all “Yeah, Autism AWARENESS!  Blue stuff!  Fuck yeah!”  But now, not so much.

This stems from a lot of things.  Primarily, it’s because I’m not a fan of Autism Speaks or it’s model of celebrity talky talky/money raising.  There are those who say they do a lot of good work–and for those people, I am glad they have something that gives them some inspiration and hope. I see a “charity” that seems to pay celebrities a great deal to raise awareness and funds,  and hold “walks” only to raise more awareness and funds. 

But that isn’t what my child needs.

This last weekend we went to the park.  Where my child was having fun, but also feeding some sensory issues.  (read: throwing sand)  My Old Man was trying to get him to do something else that wouldn’t alienate every kid there when he had a conversation with a little girl who happened to be in Benji’s class.  He asked her how Benji was in class or if he had any friends (since our son can’t answer this question himself) and she told him conspiratorially that “he’s kind of a bad kid”

And I wanted to puke.

Not that he’s acting up in class.  I KNOW he’s acting up.  I get the behavior reports.  DAILY.  It’s that this little girl has seen him act up, but no one has talked to her, or her peers about Ben.  About his differences.  About his challenges.  That there hasn’t been a lesson about how to be Benji’s friend, because he has trouble initiating play.

Awareness needs to be more than numbers from the CDC and scare tactics and conversations about vaccines.  It needs to be more than spreading generalizations about SOME traits that occur in SOME people with autism.  There needs to be a component of compassion.  While people are being made aware, maybe they could be reminded to be kind and giving and compassionate?  Perhaps the awareness we need to focus on is our own awareness of OUR actions toward those around us who are different than we are.

I for one plan to spend April working on my compassion.  Not only to help my child, but to help the world. Pay it forward, help the lesser of these, maybe educate someone who doesn’t know why my kid loves throwing sand.  And yeah–maybe a chat with the resource teacher about helping my son’s class understand who Benji is.  Because that is 100x more worthwhile  to me than walking around a track all day.

Categories: Autism | 20 Comments

Power

Rape is the only crime in which the victim becomes the accused.  –Freda Adler

There is a lot of chit chat today about victimization.  Unfortunately the victim the media SHOULD be discussing it being painted as the villain.

And of course she is.  Because OBVIOUSLY it’s her fault that two boys made a fucked up choice to flaunt their power and abuse someone without power.

(seriously–if you didn’t read the sarcasm in that?  You need to find a different blog to read)

But I’m not going to waste time painting the picture of the obvious that we live in a rape culture–where rape is a joke for many, and a reality for more.  You all know at least one person who has been raped, even if he or she hasn’t told you.  Even if she never went forward with the information knowing what the culture would say about her.  Even if she thought that going forward with her story would only tarnish her as “whore” and him as “victim.”  Because that is invariably what happens in our society.

No–I want to talk about the idea that men cannot help it, that boys are inherently violent and that we need to take that into consideration when they do atrocious things.

Lemme share a story that is not about rape, but rather about power.  Because rape in its purest form isn’t at all about sex, and everything about power.

When I was in high school, our school had a kick ass football team.  Maybe not the powerhouse of surrounding towns, but good enough.  We weren’t a small town, nor insular, but like any other town we had one high school, and our athletes carried a certain power.

And like any other town with a high school, there were parties involving alcohol and teenage stupidity.  And at one of those parties, a few of the football heroes took advantage of someone without power and beat him nearly to death.

There is no question here posed that he “deserved it” or was “asking for it” as I think we can all agree that being beaten that badly is NOT something someone deserves, even if they are being an asshole or said something nasty about your mama.  No one deserves to go to the hospital because they don’t have any power.

(and for any of you harboring any blame toward a rape victim, I want you to think about that example and apply it to her.  I don’t care if she was walking down the street nekkid with a sign that says “rape me”–it is STILL NOT AN EXCUSE)

Anyway, our town felt the brunt of this case because it actually made national news, and our school football team was painted with a broad brush as thugs and bullies.  And it felt unfair–because most of them weren’t.  But let me be clear here–a couple of them were, and deserved to pay the consequences of their actions.

As a result of this horrible beating, our school came out with a “Code of Conduct” that all athletes and anyone in extracurriculars had to follow.  And if you broke it–even at non school events, you could be kicked off your team/whatever.  Even we band geeks had to follow it.  I don’t remember it–prolly because we didn’t go about beating people–but people were up in arms about it.  As an adult looking back on it, I can now say of course!  That makes sense.  If you beat someone to death, you don’t get to play football–even it it was a private party.   ‘Cause here’s the thing.  The code needed to happen, because at least a few guys needed a reminder about how to act.  I’m sure there was a rule, or at least should have been a rule like 1) don’t beat the shit out of people because you can.

Because this is my point–ACTIONS HAVE CONSEQUENCES.  and if you choose to use power over another person, there will be a consequence.  It may be a punishment. Or maybe you think you’ll get away with it.  but even that will have a consequence.  Because if you abuse power, and get away with it, the world is doing you and the rest of us a disservice.  Because then we will see the abuse as something normal, as a part of human nature, and we will become numb to it.  If someone gets away with abuse of power, it only sets a precedent for others to do it, and then when someone stands up and shouts “ABUSE!” they will be viewed as the abuser instead.

They may have been rising stars, and they may have had a future ahead of them, but their choices–AND THEIR CHOICES ALONE–ruined their lives.  Not the person they abused.  Because their actions already ruined someone else’s life

If we refuse to hold boys up to the same code that we hold women to (don’t dress this way, don’t act this way, don’t get raped) then we are doing them a disservice.  We are saying we do not think they can do better, that they are no better than animals, that they cannot evolve.  and that, gentle readers, is a steaming load of horseshit.  MY son will be taught to NEVER abuse his power–because he is going to be big and strong if genetics are ANY indication.  And he will know–because I will never shut up about it–that abuse of power is a cardinal sin in this house.  End of story.

You know why rape victims seem to deal with the trauma of their rape so well?  BECAUSE as a society WE HAVE NO CHOICE. So many people have been a victim of rape that it has become the norm to “deal” with it.  Because the more noise a victim makes about it, the more abuse she is wont to suffer. We deal with it and survive because no other choice it open to us.

I don’t want to hear another thing about those “poor boys”.  They made choices.  Bad ones.  And now they are paying a slap on the wrist penalty for those choices. And that girl has to continue being victimized through the media and in her hometown as the perpetrator instead of the victim.

THAT is rape culture, people.  And it is why we feminists and others are so “uptight” about this whole “rape thing”.  When words like “legitimate rape” enter our culture, it is no different from the 1950′s idea that she was “asking for it”. Someday we are gonna wake up and see that horror of all this.

Someday.

I hope.

I REALLY REALLY hope.

*not holding my breath*

Categories: Uncategorized | 5 Comments

Just Stop It.

Today is the annual “Spread the Word to End the Word” campaign.  It is a subject near and dear, which i blogged about in detail last year.  So i’m not going to go into a long rant this year.  BUT

You are better than using that word. When you use it, you are giving a signal to every bully in the area that you think a group that once carried that label medically is deemed as “other” and “less than” and therefore a target.  Even if you are not referencing them directly, EVERYONE knows what you mean.  And when you use it, or let others around you use it, you are saying it’s ok to treat an entire group of people badly.  You are saying it’s OK to bully, and harass, and even take away their rights.

Yeah–we’re annoying in this.  Yeah, you might consider us the “word police”. And hey if you wanna keep using it, indeed shouting it from the rooftops to exhibit your freedom of speech, then do so.  Just know MY freedom of speech may compel me to call you a douchebag for doing it.

Just STOP IT.

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Categories: Uncategorized | Leave a comment
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