Kamp for da Creature, pt 2 of 2---"It's all about da Boy!"

The closing song with all the campers...mine is the the one facing the wall...  O_O LOL

He wanted me to know that Kamp Kaleidoscope was great fun, apparently.  Also, he immediately wanted to know if he could do a WHOLE WEEK and when could he do that and could it be soon? 

He also realized home is really a cool place he'd like to be, too, and this realization was perhaps the first of its kind, in like, you know, EVAH.    (Did I just do that gesture where you quietly pump your arm back while hissing "YES" under your breath?  Nope, I'm WAAAY too mature for that...  Way.  Too.  Mature.)  He likes my food, missed me tucking him in, and really likes his very own bed with his stuffies. 

All of this was communicated in and amongst the  "I got to zipline TWICE" and "there was a campfire" and "they did gross stuff at the campfire and I didn't want to do that, but it was super funny, Mama," and "I GOT TO SWIM FOR TWO HOURS!!!" and "there was roast beef" and "I liked my counselor" and "there was this kid named Thomas, and he was great!" and lots of talking about the counselor's friend's iPod and the occasional grumble that there was a kid who "HAS to watch movies to go to sleep."  I reminded him he HAS to sleep in total quiet darkness and that his way is probably tortuous for the kid who needs the movie.  I also reminded him that he has his challenges, too... 

But he did have an insight he shared with me after I fed him "the best fried chicken livers in the whole wide wide world" (We're not going to tell him that there are plenty of gas stations in the south with the very same friend chicken livers, right?  We can all agree not to spill the beans, right?) and it was one I truly wondered if he would arrive at (though I suspected it would occur to him in some form, I did not really expect the form it was communicated in)

"Mama, I'm really lucky.  Autism gets harder deeper into that spectrum, doesn't it?"

Did you hear the mic drop there?  Did I hear gratitude, in a quiet murmurous roar build and crash on the shores of his life?  Did he finally, utterly see it?  Will he connect it to the work that we were blessed to be able to do from 7 months forward (because I knew...not my first rodeo, not my first encounter with the beast that is Autism) and continue to do every day to keep him moving forward, always forward (occasionally backward) and toward a hope that he can find his place in the world?  I don't know.  I'll know more when he has to go back to doing PT every day tomorrow.  Ugh.  The first day back is always so much unfun for da Mama, as he spews every bit of venom he feels about being "different" all over me while grudgingly doing the things we must do... 

The insight will bear fruit as his life goes on.  He needs to know he can understand that deep end, and probably communicate there as his special gift.  He needs to know he can be kind, when others are scornful and mean.  He needs to know that he will get bigger, and so will everyone else on the spectrum, and the world we all create together (neuro-typical's and ASD's) will very much depend on how much kindness there is to go around, and how well people can translate for those who communicate in so many varied ways. 

He knows he needs me.  He now knows he is lucky.  He had fun.  He met people who did not scorn his idiosyncracies.  He was allowed space to just be, without my frenetic pushing toward anything at all...

He played, swam, ziplined, and laughed.  He criticized food and schedules and probably gave the staff absolute hell before the ziplining, and about the kid who likes opposite night routines, and they were kind and did not scorn his himness.

I will continue to work to help fully fund this place, to help it grow, and to ensure that more kids will be nurtured and befriended in the rural woods of Mississippi.  It's a fantastic place.

Now....go like the FB group and FB page already.  I know some of you intended to the other day but didn't get around to it yet.  The links are in pt 1, the post right before this one.  :P  

Toodles!

Kamp for da Creature---pt 1 of 2--- "It's all about da Mama at first"

So, I prepared, printed a list of his belongings, made him responsible for gathering the things on the list, checking them off, and explained how to use his sleeping bag's outer bag as a laundry bag so he has some reasonable hope of getting his suitcase repacked, after he *cough* of course remembers to check all his belongings off on the identical version of the packing list he has in a neat ziploc bag with a crayon inside his suitcase...

None of that is going to stick, or work, because this is his first time at camp, and I'm cool with that.

You have to start somewhere.
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Because I have recently volunteered to help with the social media arm of TEAAM, I've been serving as an admin on their Facebook Group...

(Please...go join the group as a favor to me, PLEEEEZE....Pwetty PLEEEZE....blah blah blah....social media groveling---  

you can find the group HERE and when you do, you should definitely share it with all of your friends with the following text----"I have a friend who is desperately trying to get the word out about this fantastic, one-of-a-kind social experience for children and young adults on the Autism Spectrum, and apparently she's offering to ship home-baked cookies to anyone who joins" 

[I'll kill you later for that one, when I finally get my kitchen clean again from baking the thousands of cookies that all of your followers require of me when they join the group]) 

...I have learned from other mothers (take a breath, this sentence continues... bwahahahahaha) that sending your disabled child to camp is stressful.

____________________________________________________

It's not stressful at all for me.  I dropped him off, cheerfully looked the staff in the eye, and said "Good luck with that" and walked gleefully to my car, which I drove straight to the movie theatre so I could see "Jurassic World" IN THE THEATRE!!!!! (ps---do not take small children to this movie, you'll thank me later, but it was great fun for this grown-up)

See...for the past 12 years, I've been chained to the care and support of a high-maintenance, high-stress child.  Oh, I tried child care, really, I did, but every time it was eventually (or immediately) disastrous, so I decided to suck it up and give up on trying to pay someone to take care of my child which was either the best or worst decision of my life, but it certainly ended my career and ability to be alone, like, you know, ever, really and it was hard. 

That decision had the added consequence of forcing my older, neuro-typical child to serve as emergency childcare when there were no other choices (like, when I had to be in the hospital and she had to miss classes at University, or when I had to have planned medical procedures, or when I was too sick to even take care of myself).  I suffered from tremendous guilt through the years at having to rely so heavily on her, but there was no one else.

My only other family is my father, and he lives in town, but he has a lot of people and animals to take care of himself, and, honestly, children have never been his "thing," so it has always been best not to stress him out with a child that lives to perturb the perturbable.  If you can face off with my son without getting your feathers ruffled, he feels safer, happier, and life will roll along as peacefully as possible.  Short of that---let's face it, you're SCREWED.

All of this to say that this morning I woke up when I wanted, cooked nothing (so far), and happily harvested basil from the garden which I will turn into solo pesto for lunch without apology or compromise.   It's like heaven.

For now.  Because I do know he is coming home.  If he were going to be gone for a long time, I'd be sad, but 43 hours does not count as a long time.  It's barely time for me to catch my breath.

This is why what TEAAM is trying to do matters so much to me.  One of the tenets of their mission is to provide respite for those of us who care for people who exist on the Spectrum.  Respite is rare, hard to acquire, and often fraught with risk.  To be able to assuredly send my son somewhere that he will HAVE A GOOD TIME WITHOUT ME is like gold.  

On a related note----My daughter is currently working diligently to devote her life to a vision---she is well on her way to being able to provide all-in-one daycare for disabled children.  They will get to play and live and learn alongside neuro-typical kids.  She will take her Physical Therapy doctorate, and her art skills, her camp training, her OT training, and her Kinesiotherapy license and add to it a business license, malpractice insurance, and hand-picked staff (including a Speech Therapist) and open a daycare like no other, at least no other available here.  A daycare where everyone leaves each day smarter and happier and where parents feel safe living however much non-spectrum-related life they are comfortable with each day.  Even the neuro-typicals will walk away each day having learned art, music, and empathy for those with disabilities.

If she succeeds in her quest to provide true daycare for spectrum kiddos and turn this feeling of freedom I have right now into a daily occurrence for other parents/caregivers?

That would be blessing beyond words.  I wish I could have not had to drive all over the town, all the time, to all the various necessary therapies.  I wish it had not had the effect of alerting my son to the fact he was different ALL the time.  I wish he had had a place where he could go, play, get his therapies in a quiet "it's just what we're doing today" environment where everyone "plays" the same way...these things would have made such a difference in my life as a parent.

Parenting him has been hard, and I live constantly with this feeling of being trapped by a love too great to give up or give in, but I promise you, it has been so hard.  When 43 hours of "freedom" feels like the best thing I've had in twelve years that is "just for me", you know this a difficult row to hoe.

So, have fun at Kamp Kaleidoscope, my darling baby boy.  I'm gonna party like it's 2003, and try to remember what I was like before my whole world became taking care of you.  Tomorrow will come, and I'll go back to making it all seem normal enough, and go back to making sure you are safe and moving forward, but just for today....

Toodles!

Adventuring? School boards? NOLA Time Fest? Daleks? Life on planet Spectrum continues...

I was trying to sort out my phone this morning and actually use it's photo saving software array, and found all the pictures from the Big Adventure of three years ago.  I have been toying with the idea of taking a mini-adventure with da Creature this summer WITHOUT having the benefit of da Firstborn's aid and assistance.  I apparently like to live dangerously...

So, where should we go?  What should we do?  What haven't we done?  Should we go back to Houston for Pirates of Penzance (which is admittedly a good idea, but airfare is overpriced and driving is horrible, so....I'm really on the fence about this one)?

Meanwhile, on the home front, there have been unsettling developments in our local school system, none of which I understand fully yet, but apparently when the local School Board votes on something they never ever get back to the people involved.  This can only end badly for Eric, but everyone keeps telling me not to worry.  I am not a happy camper at the lack of information coming out of the District, but what in the world can I, one tiny cog in a giant wheel, really do about it anyway?  Perhaps contemplating Daenerys's thoughts on the subject of wheels isn't really that helpful, but it does make the frustrated, wicked, central core of my being happy when I consider my responses to the many passive-aggressive power hoarding civil servants who have forgotten the meaning of the words "civil" and "servant" and who hold absolute power over my child's ability to do public school...

UPDATE---it's amazing, you know...just three hours after I posted this, I got word from the District that all has been unsnarled.  I have an answer, and it's a good one.  So, now I can have a more peaceful summer! 

But, moving on to bigger and better things.  We spent most of last week promoting, and then working NOLA Time Fest III.  Though I'd have preferred better turnout (HEY---Hilton Airport NOLA...did you forget to put "adequate parking for guests AND convention spaces" on your to-do list when you designed your ridiculously inadequate hotel parking?), the people that did manage to make it there, park and come in were delightful!

Our Dalek Extermination Booth this year was totally redesigned.  I knew we'd never be able to shoot nerf darts at the beautiful Dark Smalek, so I created a laser target booth where you shoot "laser" guns (um...infrared fire hose devices if you ask me, given the crazy amount of work I had to do to make them able to shoot the targets individually) at lighted targets and make the lights change color.

 

I learned that too many rules are onerous and make for confused people who do not donate nearly as much money as people who are simply handed guns and told to play at shooting targets.  This is a valuable lesson to learn!  

We raised money for http://www.teaam.org/ TEAAM Autism, and that will be our permanent focal point for fund-raising for the foreseeable future.  TEAAM has a camp for autistic kids and I am encouraged that they provide safe, fun summer camp activities for all shades of the spectrum, and for all ages.  It is a wonderful place, worthy of my time and effort.

My dad came to Time Fest again this year, and it was fantastic to have him there, driving Dark Smalek around, terrorizing two-year old children, and delighting everyone with the pretty Dalek.  We did some television promoting, which was fun, and hard, and all in all, everything came together nicely.

Dad, fixing targets behind Smalek

At "News with a Twist" at WGNO

On the Morning Show at WWL-TV in NOLA

When Costumes Come Together

<<<---This photo bears some explaining.  There are things about life with an autistic child that I tend to gloss over, but this moment in time was particularly fraught with the unnecessary drama and struggle that comes sometimes with my child:

• He was exhausted, having been woken up at 4:30 AM
• He had said goodbye to his beloved sister at the airport at 5:30 AM for her summer job in Colorado
• He had been driven three hours to NOLA
• He had been forced to put up with adults trying to get the booth set up when he really wanted food and quiet
• He was not able to go play pinball because...adults/booth/reeezons
• He had HAD it
• The wifi wasn't working, which wasn't my fault.... 

All of that resulted in his flat refusal to do anything anyone told him to until "the wifi was working again."

O_O

That is not acceptable behavior.  If you are my child, you don't say "I'm not doing it, and I'm not compromising until I have wifi" to me...that actually results in this grown-up going all Mommie Dearest on your ornery little ass.

So...through a series of parental control maneuvers, I managed to force him to smile and take this picture.

On a related note...

He never got wifi. 

He wasn't GOING to get wifi at this point, even if the hotel did manage to provide it.

Oh, the poor dear...  *massive eyeroll*

However, he did get lots of love and things to do and eventually he did settle down and watch the Sound of Music behind the TARDIS, and he was much more cooperative after that.  Still...it was harrowing for me, especially since his yelling and refusing and stomping and crying were in such a public forum where I needed to be cool, calm, happy-seeming, enthusiastic and seem all shit-togetherish....

And so we meander to the end of this blog post.

By the way... I seem to be cured of Hep C.  At least that's what the medical professionals are calling the SVR (sustained virological response) I have achieved at three months.  I'll believe it when I die from that parachuting accident at 80 like Dr. Regenstein promised me...  ;)

Toodles, all!