Sensory issues

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.

DSCF4767

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?

IMG_3397

BUTTONS! TO PUSH EVEN!

Categories: Autism, parenting, Sensory issues | 27 Comments

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

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

Flashback Friday: Haircuts

He’ll sit for them now–but we are only 2 years removed from the nightmare that was getting a professional haircut.  Here’s a little reminder of what it was like to visit, as Ben calls it, “the haircut house”

Aug 6, 2010

So, my boy inherited a thick, beautiful head of hair. Thick like mine is (when it’s short), blonde (like mine was in my youth–ah sweet youth!) and coarse. (I don’t know who the hell gave him that one–both mr. mommy and I have soft fine hair, as do his grandmothers. I swear–his hair feels asian!) He also inherited my cowlick(s) which can be quite comedic as his hair gets longer. Lately, it was starting to get “moppy”, and ever efficient mommy that I am, I declared it was time for a haircut.

Moppy

He’s had 4 so far. Or maybe 5. Let’s just say it ain’t a regular thing. First–his hair doesn’t grow that fast, and second, like most toddlers, he hates having his haircut. Hates. I’m using the word hate here to describe a haircut. Hate.

I try to take him to my hairdresser, who will cut his hair for a reasonable fee. And while he gets a fabulous haircut–it is physically and mentally exhausting for all of us when we are done. She has a specific haircutting area–he never wants to stay in it. I never bring the right toy. He won’t sit in a barber’s chair for nothing. He WILL NOT wear that noisy cape. And he doesn’t, not anyone, no way, forget it lady and your sharp scissors, want ANYONE touching his HAIR.

None of this surprises me. He rarely lets me comb it either (thus the comedic cowlicks). I’m not even convinced he likes me washing it. (but he tolerates it because he LOVES the rinsing part) He doesn’t like us to dry his hair with a towel. He used to like the blowdryer, but that lasted all of a week. When it comes to this boys hair–HANDS OFF!

So, since the three times we’ve had Tonia cut his hair were so exhausting, I tried one of those “kid” places. The one I tried a while back sported a particular floating object–yellow in color. It was the only time Ben sat in a chair–and got the crappiest haircut I’ve ever seen. Nothing to thin out the thickness, or address the cowlicks. I had to spend more time on his hair after that cut than any other he’s had.

So my thought this last week was this–he sat in the chair at the crappy haircut place…maybe he will again at a different haircut place. Maybe the stimuli in these places will be enough to engage him briefly enough to let a professional get in there and cut.

So I packed snacks and his favorite DVD into my purse and we headed off to Woodland hills to a “kid friendly” and even “Autism friendly” salon.

WE get there and the place is LOUD. Benji is interested in the toys, not the chair. Strike one. The DVD players advertised online are not working and may have never worked. So the DVD I spent 15 minutes looking for that morning is useless. He is more interested in the train table. OK, she says, I’ll cut while he plays. And I think–yeah! That’s how we have to do it. I try to keep him in one place and she gets in there, cutting here, snipping there, thinning, thinning. And I think, this is going to work. IT really is. It’s going to work.

“All done hands”

This was my son’s way of saying, quit it lady! Oh dear. Only half of his head is cut at this point, so it’s not like I can say, oh, just trim a little bit more and we’re good to go. No. We’re committed to a cut now, and it has to continue.

So now begins the chase. He wants to play on the airhockey(!) table. I corral him back to the haircut area. A few more snips. More running away, more herding, more snips. Now, I called this place because they advertised an autism friendly haircut–meaning it would not be rushed. Guess what. Her next appt. showed up and here we were, trying to finish this cut because the other mom had a snooty look on her face.

Then came the clippers.

Yeah–we’d had that discussion. I told her he doesn’t like them. But to finish his cut (yes–we had gotten to that point, phew!) she had to either take clippers to the side, or snip with the sharp scissors, which required stillness. So I grab him, put him on my lap, hold his arms down and she gets one side done. With the clippers. The other side was well nigh impossible. So I told her to leave it with a few pieces I knew I could trim at home once he calmed down, paid the lady and high tailed it out of there. Once we were in the car, we were both able to take a breath and enjoy a moment of silence. That’s before Ben began his mantra of “go through tunnel”–which is kind-of this phrase which could mean:

a) literally drive me through a tunnel
b) I want to go
c) I’m hungry
d) you’re the worst mommy in the world, and I curse the day you ever brought me to this wretched salon with all its stimuli and smells and you let that lady touch my hair and to top it off you wouldn’t even let me play airhockey! I’m calling child protective services as soon as we get home!

D is variable, by the way, usually in reference to whatever messed-up activity I just had him participate in.

So after we get home, alcohol is consumed and naps are handed out, I google “haircutting + toddlers+autism” Even without the “autism” search, the answer is a resounding “DO IT YOURSELF, DUMBASS!” which is what my gut told me about a year ago. I kinda knew with that last visit to Tonia that I should just learn to cut it myself and be done with this stress! But, as stated in previous posts, I don’t always listen to my gut. I kept getting convinced that he needed a pro to cut his hair. And that was because I wanted it short. I mean short short. Practically high and tight. And he is cute as hell with short hair. But you know what, he’s also cute as hell with the mop–a little cuter, maybe. And with a pair of scissors and a DAY (or 3)to cut his hair, I can probably keep it at a moppy exisitence until he is old enough to a) sit still and b) not scream in bloody terror at anyone wielding scissors. Luckily though, this week’s cut is pretty short. So I’ve got a good 6 months before I have to even make a snip…

His most recent cut 2012. Watch out GQ!

Categories: Autism, parenting, Sensory issues | 5 Comments
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