Beauty in the breakdown

yea, It's like that.

Officially Almost an Aspie

Hello everyone! Its Friday, It's sunny, I have dubstep on my hello kitty headphones, and I just was given the official (well, sort of) credentials as a person with Aspergers.
 So, I guess this means that I am Almost Officially Aspie now.

It was an interesting experience. I had an appointment with my psychologist today, after "graduating" from "therapy" last month, after the fiasco with the Hospital, I made another appointment to ask for a referral to a specialist so I could get my Official LABEL so people would stop saying things like "she must have Munchhausens " when I'm minding my own business and being "normal".

We read through the DSM and she asked me alot of questions. Some of them were boring, some of them were weird and some of them were just outright offensive. (I disagree with the majority of the Myths surrounding Autistic people, especially the ones that paint them as cold, heartless, shells without people inside)

We talked for over an hour about how Adults with Aspergers have different symptoms and challenges, and she actually thanked me for "the opportunity to see first hand how Aspergers can effect a persons life as an Adult"

She said that she didint feel comfortable giving me a referral to a specialist, because I did not "qualify" as having Aspergers because it was not causing "significant impairment in my life"
 Which kinda made me upset at first, and then I thought about it a bit. I Have a weirdly wired brain..I was born with it, and I'll die with it, and there are just somethings that I will never be able to fully comprehend or express. But I have made ooooooooh so much progress on my life journey of understanding and acceptance. I can look people in the eye now, I can go out in public, I can raise my kids, go to school, hold down a job. I Can do these things. Just because I am Outrageously Uncomfortable doing so at times, doesnt change that.

so no "Official" Label. No Diagnostic testing, because, as My psychologist puts it. Its not a "problem" for me.

and before you react, I want to tell you..that really..It isnt..not anymore. I still dont drive, Ive never had a need to do so. I use the stairs instead of the elevator, I go for walks in public with my children, I can order my own fast food, and pay my own bills, talk on the phone (I hate the phone), and I know to bring over ice cream and chicken soup when someone is feeling bad.

This doesnt change the core of who I am, only how I manage my life. and Apparently I am doing pretty well in that department. Maybe not to some peoples standards, Maybe not to most peoples standards.
I still get pretty strange responses from people.

and that's why my Psychologist is going to write me an Official letter to help with my "significant social impairment" (not mine, from other people..her words).  So the next time I have to "Explain my Quirkyness" to an "official" be it the hospital docs, CPS, a police officer, a perspective employer,
(or any of you naysayers on the internet).
lol.  I will have something offcial that I can show folks.
Exactly why I seem a bit strange. BECAUSE I AM..

and in a few weeks I will have an "official" letter to prove it. 

So I guess this makes me "officialy an Aspie now"
Funny, I dont feel any different.
(licks arm..dont taste any different either)
how strange...

;)

Falling Free

I hate the feeling of falling. I have a horrid fear of heights. (seriously the couch is too high up for me sometimes). I like my funky colored feet on the ground.  I dont like change...and most of all I dont like being out of my element.  And I really Really REALLY DO NOT LIKE HOSPITALS.  not in the least, not even slightly..not even if I made up a story about how I was secretly a superhero with amnesia who is there recovering from a death defying battle with a giant alien robot. Nope...Not even then.

I hated hospitals before LB was born..and now..the very idea of a Hospital or Doctors office makes me cringe and have uncontrollable ucky feelings...like Hospitals are bad juju man..I  can sense them now. for Miles....

I read somewhere in my obsessive researching that people with  PTSD often will go to great lengths to avoid the trigger of their stress. In my case, I get run through it all at least once every 3 months if not more often. With all of LBs specialists, medical checkups, and the rest of the Early intervention/Disability/Sick child check ins, My whole life has been turned into one long waiting room, waiting on another blood draw. (check his cratine levels, make sure his kidneys are still doing ok), another BP check (hows his heart rate? does he have proper o2 sats?) and urinalysis (any protein? blood? sugar?) on an almost daily basis. LB has cysts on his kidneys, scars on his lungs and liver, hemiparisis of the right side of his body, and he's also missing hi carotid artery due to being on the VtoA Ecmo that saved his life...

A life that wouldn't have needed to be saved. A life that was dong well, just not "optimal" not "perfect" and when a baby isnt "perfect" doctors panic. They especially panic if your a Homebirth transfer, and they panic more, If It's me...


See, I'm a bit "different" Eveything I do Is different, Everything I am, Everything I feel is just a bit "off" for most people. I am pretty sure that I have this "thing" they call "Aspergers" Its a way of categorizing people with personalities like mine, people who are introverted, sensitive, and socially awkward.

It's a popular theory that people with Autism are "mind blind", that is they cannot perceive how others feel and think. In my case it;s a bit different...(and I think this is pretty common for Aspies..

I am a very loving and caring person...but not being able to predict how others react to me Is a life long struggle.

LB and I stayed at THE Hospital overnight for his cold. (this was the hospital that put us all here in the first place, the one I swore I would never go back too, the one that popped Lb's lung and sent us on this wild ride)

At least that's what I thought happened. I found out later that I was being held for observation because the nurses were concerned that I may have Munchhausen syndrome by proxy (that's the nasty psychological Illness where you make your kids sick for the attention of the docs).

Obviously I did not give LB a respiratory infection. What I think happened was..I was scared,
I mean really scared., here I was, in the maternity ward, a place I never EVER wanted to be, in the hospital that I almost died in not two years before, holding my son who was having breathing problems due to a cold that set off an asthmatic attack, with 15 different docs/nurses/professionals coming in and out of the room every half hour, and asking me how we were doing..

heh. so yea, (my aspies will get this for sure) I smiled and said "oh we are great!" when asked if there was anything we needed " oh, no we are fine, thank you *smile* " Add that to the fact that his BP kept spiking the whole night, his breathing was labored but his o2 sats were normal, and I had to talk doc tech to a TON of different people....I can almost see how they came to the munchousens conclusion...

That's the problem. I'm not comfortable in Hospitals, but we spend every 3-6 months at the childrens hospital, with 4 different specilists, plus his thearpy team that comes to the house once a week. We have our own BP cuff, and we do our own urinalisis checks to make sure his kidneys are doing well.

This is our life now. the docs, the tests, the specialists..this is our life...

and I'm sure this is pretty weird for most people. but I am learning to accept it. I'm a little different, I get mis understood alot. I worry about these mis understandings causing problems for me and my family...but then I realize that....No one is in control of what others say/do/think about you. the only thing you can do is be as nice and understanding as you can, and do what's right for you. 

I spent that whole time, terrified, frozen, confused, but I never felt any of it, all I felt that whole time was Calm control, because LB needed me to be calm, he needed me to be comfortable with the doctors, the tests, the room that whirred and beeped. He needed me to be Ok so he could be OK,

and you know what? We are.. We are ok. LB is fine. We have meds for his "asthma" and a long term plan with his pediatrician. We survived our hospital stay just fine. And whatever I found out afterwards doesnt change that. Beating myself up for "doing it wrong" isnt going to help me.

and you know what..It NEVER has. I have spent my whole life trying to Appear..well.. not me. I have never once..had the courage to just let it go, to Drop the Mask...to Fall...

So this is my brilliant Idea...I'm going to try it. I'm not going to label it, I'm just going to be. If  I'm scared, I'm going to be scared, and If I'm sad I'm going to cry (yes even in public). Because It's the one thing I havent tried. With all the programs, and Learned behavior, and Life experience...

I haven't let myself Fall.....

I hear it feels like flying.....

Glow

I have a secret,  

When I'm happy I feel luminescent. Radiant, and Bright. 

I am so full of light that it threatens to explode out of me,

 in sound, in movement, in dance, in style, in color, in creative expression.

I feel stunted, dulled, and faded 

when I loose my light..I feel lost. 

Its kinda like I lost a bit of myself, disguised as my best childhood friend. I knew she was standing there just a second ago. but now I stand here with my hand outstretched, holding nothing. 

she's gone

I catch glimpses of her now and then..

out of the corner of raindrops

in the sides of windows

and on the edge of sound.

She's there, somewhere, just out of sight. 

waiting for me. 

to glow. 

I used to flash my lights more often then I do now. I used to luminesce and burn, and radiate from my very core, my passions, my interests, my loves. I dont have "likes/dislikes" I only understand "love and hate" and when I "love" something or someone, I do so with my whole being, It's a compulsion, I HAVE TO ..I have to express Love and Joy, and Light..otherwise I feel like 1/2 a person. When I spend too much time, not nurturing my creative side, not expressing myself. (which is complicated enough as it is), and when I am being flooded by negative emotions, thoughts and vibrations, I can feel that Glow dimming...Like a dying glowstick, only good for another hour or two, before being thrown away. 

Ive been trying to focus on the power of vunrability. (the blog is part of that). Where I am trying to be as honest to myself, about myself as possible. (This is very hard to do). I have been focusing on all the little positive things, and little miracles that happen throughout the day, instead of the setbacks. 

I LOVE COFFEE, I Love music, I love fun colors, Happy people, and Awesome Games. I love the laughter of my children, I love the tiny little blue flowers in the backyard (I think they are forget me nots, but I'm not sure, all I know is they look like you could pick a bunch for a vase in a dollhouse and they would be the perfect size) . I love the sunlight through the trees, I love our neighborhood tabby cat...I love my internet friends..I love rainstorms...

but none of that..was enough..to beat out the negativity this week..

My insecuritities know no bounds..but I guess this is all part of the process of being vulnerable. 

I am laid bare to the emotions of the world. I was born this way. Any effort to block it out has met with disaster and failure..so I am doing the only thing that I have never done before...

Not fight it. I'm going to let it in. Let it change me..and try not to fight too much when it does. 

wub wub wub...

There are some cultures that claim the Universe was sang into being....

I believe it was this sound..

I have been madly inlove with the "wub wub wub" (warble bass) sound since I first heard it in 1999 .
I'll never forget it. My whole world just stopped.  All my thoughts Absorbed in that sound..


 I used to be quite the "Junglette" I spent most of my young years following the local Drum-n-Bass DJs around the city. which eventually led to a lifelong obsession with "da beatz".

 Hard to imagine me being so cool I know. 

This yoga-pants wearing mom, used to don the phat pants, camo-tank and visor, and go out late and listen to what kids called "jungle, or drum n bass" back in the forgotten late 00s.  (and boy could I rock a beat, pink reflectors shining, ripping up the dancefloor in circles, triangles, and other odd dance-like motions).

the "beat" followed me through the years, sometime I would think I heard it..and then loose the memory almost instantly, Other days, I would long for that sound so badly, I would dust off my old Dieselboy CD (that's compact disc for you yung-uns) and drown in the sound and the nostalgia for hours..sometimes days at a time.

I miss the music, I miss the beats, I had almost forgotten that time in my life. I can't believe I almost forgot what It felt like to be next to a giant subwoofer while your favorite sounds are being shot (cannon style) at you, one note, one beat, one drop at a time, All fired by your favorite DJ.....magical.

I would listen to 4-6 hours of sets, from Beatz to Breaks, to UK garage, to Hard techcno, to Jungle...all the while just waiting for that..little..and amazing...Whubwhubwhub sound to sneek in the track...
And then My fave Jungle DJ would grab the tables..and my world would just explode into drums and  WHUBWHUBWHUBWHUB...

of course..that was a long time ago....I had left it all behind me...and then..

I discovered Dubstep....

Its been over a decade since I herd my beloved "whub whub whub" sound. Imagine my surprise when It started popping up Everywhere! And I mean Everywhere.. somehow almost overnight the "whub" took over mainstream music media...from pop tunes on the radio, to TV adverts..It's everywhere.
Internet Explorer: A More Beautiful Web

I wub Dubstep!

(do not click link below unless you can handle deep epic awesome)

http://www.youtube.com/watch?v=zaorAXQdaw4&feature=related

The Epidemic of Normal

you may have noticed that I am a rather loud Advocate of The disability Acceptance movement.  
I believe strongly in the idea that people are people, not a collection of illnesses,traits, or behaviors. I do not believe in "disability, disorder, or the terms we bandy about to describe differences in experience.  

my youngest child has hemiparigic CP, He has a weakness on one side of his body due to a complication from an operation he had to fix a problem soon after his birth. He has a "disability" go ahead, and tell him that. He'll just look at you dumbfounded. The very Idea that you "NEED" both hands for things escapes him. He can put on his clothes with one hand, he eats and drinks with one hand, he plays with one hand, and draws, and catches balls, and does everything a normal 2 year old does...he just does it differently.

I wonder sometimes if he thinks that we are "less capable people" because we seem to need both hands to do things he can do with just one. different perspectives are good. I understand that to my son, I may look weak, and incapable, and I understand that to the rest of the "twohanders" he may look weak and incapable. he's not. he just see's a different world,

 One of my Favorite Quotes by Albert Einstien states: "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

When we put labels on people that marginalize them, instead of build them up, we loose so much. We loose the understanding that a new perspective gives us, we loose our chance to experience something profound, and we loose our ability to grow as a species.  

"Any society, any nation, is judged on the basis of how it treats its weakest members -- the last, the least, the littlest." ~Cardinal Roger Mahony

  We have a problem here. We are treating people as "less","diseased",and "broken" this is a HUGE problem for everyone. In our desire to "help the weak" we have given ourselves the godly power to declare who is weak. and what is worse, is this is all carried out in the name of a dangerous ideal of "Normal"
Normal is an illusion. Normal is a statistical result, It's not real. There are no guidelines for "Normal" there are no diagnostic tests for "Normal" there is no medication, therapy, or product that can make someone " Normal" What we do instead, is hang onto an Ideal, and then try to make everyone else match it. We don't like how they are different from us, so we call them "Abnormal, diseased,sick,disabled,exc.." We try to Fix, Cure, Save, "Help", Include, and otherwise Find a place to put these "Abnormals" so we can feel non threatened.

 Truth is, Difference is threatening, We spend our lives as humans doing the same thing, the same way, and expecting the same result. Everyone does this. Everyone has their favorite chair, favorite food, and favorite route to work. We are creatures of habit. now what happens when you change it? when that person who has always done something the same way..see someone else doing it differently.....

 There are two ways to handle this problem. You can learn another way, a different way, or you can just dismiss it as "wrong" and go back to doing what you have always done. Most people dismiss it, or declare it as "wrong" or "sick", some people even try to destroy it because it makes them so uncomfortable. Yet others enjoy learning a new way, they gravitate towards a new perspective, they can see a different world. They have Empathy. We need to do more to encourage the 2nd response out of humanity. The part of humanity that goes " oh, I never thought of it like that before" and learns a New way.

 I have a set of traits that make me who I am, And so do you. They do not make me "sick" "broken" "abnormal" They make me Different. I'm Different, just like you are Different. That is what unites us. That is what "defines us" We are All the same. We are all human, we all have our talents and our struggles, We have different ideas, opinions, beliefs, and cultures, but we are all on this planet together, so we need to learn to Accept Differences, not Erase, hide, or Cure them. If a person is sick, It is causing them a problem. If A person is Struggling It's causing them a problem. But If someone sees the world differently, does things differently, looks different, sounds different, That is not their problem. Their problems are their problems, just like your problems are your problems.

 I am not of the mind that I need to MAKE my child a "twohander" I will do everything that I can to help him understand what it's like to be a "twohander" and maybe, maybe, he may try it out for a while. But he will always see the "twohander" world as a one handed person, even if he gains full mobility of his hand back. It's just who he is.

 Dont expect people who are "different" to fit into your idea of "normal" They cant, they can only "fit" in theirs.

 The fact that we all are different makes us all the same, that is our common ground.

We need Acceptance, We need understanding, and most of all We need a new way of looking at the world and the people in it.

I will not make my son behave like a "twohander" he isnt one. I can show him the "twohander" world, and so If he ever choses to do things the "towhander" way, he can. But I want him to be able to show others "his way" the "onehander" way. I want people to accept and honor his talents, and help him through his struggles...

Not because he has a "disability" but because he is a Human Being.