Autism

Throwback Thursday! No, No, NO!

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

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No! No! NO!

This is Ben’s new mantra. yay for me.

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

A recent conversation:

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

aaaaaaand Scene!

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

NOOOOO!  am i allowed to scream too?

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

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

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

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

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

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

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

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 | 10 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.

IMG_20111216_091558

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 | 6 Comments
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