Oh, the Assumptions You'll Make

If you were sitting in my kitchen this morning, you would have heard the following exchange between da Creature and da Mama---

da Creature:   "It's Dr. Seuss day on Friday."
da Mama:   "Really?  Does that mean y'all are dressing up?"
da Creature:  "Yep, and I'm going as the Lorax."
da Mama:  "Really?  *pause*  Um, how's that gonna work?"
da Creature:  "You have a sewing machine."

Gravity Sucks

So, once upon a time, da Creature was fearless.  I mean, breathtakingly, terrifyingly, FEARLESS.  As a toddler, he would climb to the top of the 5 year old play set and if you made eye contact (just don't make eye contact), he would automatically assume that if he jumped from the six foot high platform, you'd catch him.  Right?  Didn't seem to matter that you were ten feet away from him, you'd catch him, so it was perfectly safe to leap bodily into the air and hope for the best.

Those days are gone, and it's bittersweet.  No longer is he fearless.  He will still walk off a precipice, in a heartbeat, but now he is also afraid.  It makes me sad.  However---we managed, in our 20 minutes of adventure last night before he decided it was "too hard" and just flopped on the mat in a pathetic whining heap, never to rise again without the aid of litter-bearers and trumpet fanfares (oh, the drama of it ALL), to get him to do THIS:

See the hand on the left side of the picture?  That's da Sister, WILLING him to stay on the wall.  About two seconds later, she had to catch him as he decided that was enough of that, but it was a very cool moment in the life of my little guy.  Here's how he got there:

Go da Sister!  We managed to get him up the wall.  A thousand little victories over SPD later, we'll have him married, with children, holding down a great job, and loved by his community....

All it takes is making him get off the mat and keep trying.

Planning the Great American Vacation with da Creature

This should be, er, "exciting."

We are going to drive CROSS COUNTRY this summer.  From Mississippi to Wyoming to Salt Lake City to New Mexico to Carlsbad to San Antonio and back to Mississippi.

I feel so intimidated by the prospect.  Terrified, to be honest.  Though he rides fairly well, and we've driven to Chicago twice, St. Louis four times, and spend seven hours quite often in the car going to OT and back, the prospect of being DAYS away from home and his controlled environment scares the ever-living-bageezus outta me.

So, I will be blogging the adventure.  Because then at least, I'm not entirely alone while we manage meltdowns and hotel rooms that smell funny and "where'd all the trees go, Mommy?" questions and food we didn't plan on and all the various things that an SPD, Asperger's child will chaotically do/say/scream about along the way.  Wish me luck.  I'm taking advice, btw....if you have experience in these matters.  We cannot afford a Winnebago, so it's us and our Honda Accord and the road and hopefully a few campgrounds to save money along the way.  Did I mention that I'm a paranoid control freak?  Did I? 

breathe in
breathe out
breathe in
breathe out

Wait, we WERE trying to get to Albuquerque?

So, we'll be seeing you from the ROAD in June.  At the very least it will be constantly interesting.  At best, he'll walk away with all those concrete memories he deeply craves---"Yellowstone is steamy, the Rocky Mountains smell like vanilla, Eastern Kansas, New Mexico and West Texas are FLAT, Salt Lake City has a SALT LAKE and it tastes funny, Abiquiu has purple rocks, Taos is full of ART, Carlsbad smells like wet dog and sounds like dripply drops, San Antonio has UNDER stuff..."   Since he doesn't visualize well...he won't have to.  God bless cars, and God bless gas prices, and God bless us.

And yes, this means he gets to go to (da Creature phone home?):

Field Trip with Grandpa

We went to Battlefield Park in Vicksburg with da Grandpa (who is an engineer) and had a BLAST.  We ate at Walnut Hills Restaurant where da Creature drove da Grandpa a little bit to distraction with his impression of a lidless blender (he was hungry), but the food was wonderful and the caramel cake was warm and gooey.

After lunch, we drove through the park, and spent time at the Cairo while Grandpa explained it all...

Sometimes You Have to Stop and Ask Yourself

Was it my Aspie angel who failed to realize the significance of the moment, or did the moment rush in, all out of proportion, and wildly uncontrollable and fail to realize how significant HE really is?

He is normal....the world around him is just whack.

That's a 51 point three letter word he's sitting next to.

He'll beat the pants off of you if you underestimate him. 

Just sayin'.

Leisure Time? Pictures from the phone....

The lesson of life with da Creature is this:  never, ever, ever neglect your OT, no matter how many REALLY good reasons you have to do so.  It may look a little funny at the beach to be sporting your ILS (TLS) headphone rig with your CD's in a sand bucket, but nonetheless, if you want him (and the rest of the family) to have a good vacation, just remember:  ALWAYS DO YOUR OT.

Transformation

da Creature has a talent I have not yet successfully transformed into something useful, so I am pondering more ways to shove it through the membrane which divides how he thinks and moves and has his being from how the "NT" world thinks and moves and observes his being...

THE TALENT
He can remember the contents of video game guides.  No, not just sort of, but he can recall AND apply EVERY single character name, power, enemy, map, sequence, and weapon.

We know this because for years, as his sister completes each new game to her 100% plus, as she is obsessed and compelled to do, he can tell her what to do before she looks at the guide, tell her the names of characters no one cares about because they are so insignificant, and tell her what weapons work and what don't.  He's been uber convenient, if not a little creepy.

At first, I thought this could make him a new kind of hero---the SUPER CATHOLIC, who could remember all the saints, their days, their symbols, their martyrdom details, but, sadly, no...there wasn't a game guide for the Saints (WE NEED THIS, and a SAINTS VIDEO GAME, too, btw).

So, if he wasn't to be the next Catholic trivia star, what on earth could I do with such a specific talent/obsession?

For the moment at least, I've decided that I'll just keep buying him books to basically memorize and wait until a reason to do so emerges from the crazy world that is da Creature.    So if you are playing Pokemon, Zelda, Lego anything, Okami, Donkey Kong, Mario Bros., or Yoshi's Island, and would prefer NOT to have to buy a book or use it, give me a call, his consulting rate is $20 an hour, and he could use the money.

Taekwondo---A Six month Check Up

So, it's been six months since we started Taekwondo in the "worst environment ever" for a sensory-impaired child.  Why did I force my son who has auditory processing issues, had the motor skills of a four year old (at seven), and who could not follow simple instructions to endure an hour, three-four times a week, of loud pounding music, erratic instruction, and tons of required complicated motor skills?

In a nutshell...immersion.

Immersion is one of those buzzwords in the therapy world, usually applied as a treatment option for adults with absurd phobias who've been allowed by life to pursue their phobias to the point of isolation and ridiculous excitation of their own senses. 

Nope----definitely  wasn't something I was going to allow for da Creature.  If immersion has a purpose, that purpose is to de-sensitize the excitation, and force the individual to develop coping strategies for the phobic focal point.  Once immersed, you don't really have a choice anymore to avoid the stimuli, and the brain MUST learn to adapt.

Human beings are infinitely adaptable, and this is true of autistic children (and adults) too.  The problem is that the rest of us DREAD how our autistic loved ones are going to resist and avoid the thing they hate.  This was certainly true of da Creature, who peeled paint on the columns, punched walls and the floor, shouted out nonsense during quiet moments, hit the kid next to him, beat his ears with his hands, laid down on the floor periodically and REFUSED to do what they were asking, and generally made my life in the parent pen a breathless, shame-filled, living HELL one hour a time while the black belts of varying degrees of teaching ability dealt with him differently.  Every.  Single.  Time.   

Do you know what happens when you apply a scatter-splatter behavior plan to an autistic child?!?!?

Yeah, that'd be how that goes. So, it's been six months.  I have had to add private lessons once a week ($30 for 20 minutes) in order to get some semblance of understanding of the motor skills involved for the tasks in my head, 'cause guess what????   I have to teach him these things at home for him to have a chance at this.

So, it's moving forward.  He is a level one green belt, and he is doing okay.  I still flush with shame out there in the parent pen when I hear the heavy sighs around me as MY child is causing a kerfuffle, but hey....they just don't get it, and I have no intention of educating every single one of them.   What matters most to me is that da Creature is happy and learning and growing and the "worst environment ever" is a little less awful every week we make it through.

 We'll check back in in six months....

Oh, Advocate, Why did you Abandon Us?

Fine, we'll make our OWN fun

I'm sure any number of country songs could accompany that title, but for me, life has descended so deeply into the "theatre of the absurd" that what plays in my mind as I write those words is glass breaking and a studio audience gasping before the laugh track is played.

No, she really did just abruptly abandon us.  She said that their goals had been met.  THEIR GOALS?  What were these?  Apparently, their goals were to have the IEP read a certain way, with no care or concern for whether or not he was ACTUALLY receiving the services.  SRSLY?!?

There are days when the mind-numbing ridiculousness of navigating the bureaucracy makes me want to start quoting Paul Revere or Thomas Jefferson, but I'll be a good girl for now and just spit and hiss and growl at the internet.

For example, and I'm not making this up....

After THREE YEARS of demanding OT at school, we finally "won" and he has "OT".  It was decidedly narrow, mind you, just to address his handwriting, and he'd have 30 minutes a week with her.  Here's what she's doing:  three sentences.  That's it.  He writes three sentences for her and goes back to his classroom.  I said in the IEP mtg, that unless those sentences were variations on "The quick red fox jumped over the lazy brown dog" and she was correcting him on his f'ed up letters that she was (then I realized what I was about to say and finished my sentence in a way that would not have gotten me arrested or banned from future IEP meetings) under-serving him in my opinion.  Apparently my college degrees and graduate Special Ed training do not qualify me to assess the efficacy of an OT plan.  Of course not.  I'm just a parent.  Great.

But once it was written down, the Advocate was "all done".  She had gotten OT written in to the IEP, she had gotten this and that and the other written in, but yet the mounting evidence that this, that, and the other were not actually happening was irrelevant to her task list.

We're off to find a lawyer, the wonderful lawyers in Oz... (that's the musical theme to the next stage of my outraged life as a parent "in the system")  I'm already doing my own three hours of OT/PT/enrichment every day.  I already take him on private field trips (which they cannot provide an aide for and which only occur once a year...insert random cuss words into that sentence fragment, please), and the thought that the district is allowed to just phone it in and the Disability Rights folks are OKAY with that, well....lawyers oughtta be able to help me, right?

Probably not.  I'm about two steps away from homeschooling full time.  The de facto homeschooling AND dealing with the system crapola is for the birds.

From Big Sister, with Love

Da Creature's big sister is an art major at University, and her assignment for this weekend was to draw something important to her, so she drew da Creature.

She would like us all to know he's really not that fat, but otherwise, drawing him made her really really happy. 

She had to draw him while he was sitting at his computer because it was her ONLY hope of him being still enough to even get a rough sketch done.

                                               Here is da Creature, in his natural habitat: