Thursday, April 2, 2009

World Autism Awareness Day ~ disAbility=ABILITY Deep Thoughts for me.

What does that mean to most? Nothing.

What does it mean to me? The world.

I don't have much to say about autism because tonight has been rather eventful...

Alana had an anxiety attack / meltdown

I am having bad anxiety all day but I have no insurance to get back on my anxiety meds I was on before I had Donni.

Someone came to our home during Alana's meltdown. I said I just got home from the grocery store (car was still on, groceries in the car, pouring rain, door open) and was dealing with a major meltdown.. he stayed outside until I told him I couldn't talk right now so I doubt he was a salesperson etc (plus he only came to our house) because our door was open and it was obvious it was beyond chaotic at that moment, any normal person doing something un important would have bolted and he remained on the walkway. He wasnt a "church person" because he was alone and only came to my house, wasn't yeilding a bible or the watchtower. So my anxiety arose that what could this person possibly want? He had a paper in his hand. Did someone call CPS on me, because if I heard some of Alana's screaming especially in the middle of the night sometimes I would be worried as a neighbor. But the autism bumper stickers and the special needs bus that comes to my door should be enough to let everyone know that if things are not normal there is a reason. Did someone see her eating ice/snow or dirt in the yard? because well with autism that can be an all to regular occurance. I could barely hear the guy but it sounded like he said I am looking for the priest family? which im sure he didn't say that.. but with all the screaming who knows I just told him to come back later because I couldn't even hear him speak. Was he someone serving me legal papers? Was he from a government agency like SSI? I highly doubt that but ya know.. He didn't come back tonight so maybe I scared him off, maybe he will be back tomorrow but if he is he better be back before 5:15 like today because I leave at 4:30 for work.

Now I am sick or having a panic attack , hot flashes, diarrhea (TMI), body freezing / shivering, head on fire.

Daddy woke Alana up to change her diaper because she fell asleep pretty early (meltdown wore her out and she didnt nap during her nap/relax time so she fell asleep right after dinner, was awake this morning at who knows what time I woke at 8 and she was awake in her bed) and he hadnt changed it before she fell asleep because she was dry but the flood gates opened when she fell asleep as usual. And he seen a huge mark on her leg and called for me to come to the room and asked what it was. I said I didnt know, but it looked like a huge dotted, lacy bruise hickey looking mark.. Not a bruise bruise but like a compression mark if that makes any sense. Then he rotated her to put her diaper on and her other leg had a mark in the same spot! I immediately thought well if that guy was CPS this surely isn't going to be a plus..then quickly realized that isn't the point.. needed to figure out what happened to her. I emailed her teacher to see if she fell (doubtful doesnt look like a fall mark unless she fell on one side then fell on the opposite side... yeah I don't think so) or if she might have been buckled/restrained in a seat or something and it was too tight across her legs?.. she actually was checking her email and said Alana was in the net swing several times today and maybe that caused it (the net swing clings to your body but like all swings it has an edge on it that might have dug into her legs?). That sounded better then my thought of maybe her nap/relax time in bed she got caught in between the rails, causing the meltdown or tight seatbelt on bus?.. but her meltdown wasn't an owie meltdown she will normally tell you if she is hurt because she likes me to kiss it. This just wasn't a hurt cry it was a pissed off for some damn reason scream. Plus with the dotty/lacy appearance the net swing seems to fit better, and the fact that her and daddy both mark easily. Daddy has frequently come home with a straight bruise looking mark from one shoulder to the other from lifting weights and letting the weightbar relax gently on his shoulders. And the mark stays for at least a day but is never ever painful, just a skin reaction.

So let's hope hers goes away in a day? and is not painful..

Mother of the year for me..

At least I had a chance before all the anxiety to print out a bunch of dot to dot sheets, cut and paste sheets, shape puzzles I am going to make into folders (got some more folder making supplies!), tracing object sheets, teacher sent home some cut and paste stuff, cutting practice sheets with bold border to cut, sticker dot letter sheets and picture sheets. Will share more on the worksheet type tasks for her desk at a later date.

What did you learn if you read all this?

Autism Lesson # 1:
We have to guess what is wrong with our kids because normally they cannot tell us where a bruise came from. Most people take for granted that their 7 yr old can simply say mom I fell at school and got an owie.

Autism Lesson #2:
It's a reality that you may get CPS called on you because of your child's behaviors, screaming, pica (eating non food items). Some of this can look like abuse or neglect from outsiders.

Autism Lesson #3:
Anxiety ranks high in priority in a house with Autism.. mine anyway.. lately.

Autism Lesson #4:
Even kids with Autism can want their owies kissed.. a very very typical thing. Praise god for those few oh so typical things that make it all better in the grand scheme of things.

Autism Lesson #5:
Be aware because its World Autism Awarness Day, okay the days almost over be aware whenever you read this post! That World Autism Awarness Day is April 2nd, and the entire month of April is Autism Awareness Month.

Autism Lesson #6:
I wouldn't trade it for the world, suspicous markings, dirt eating, wall licking, jumpin, spinning, swinging, screaming, anxiety, isolation.. Its a part of me now and will forever be and it has changed me for the better and for that I am eternally greatful.

Autism Lesson #7:
You won't get this from reading this post but if you read this at all or know me the least bit you will know I stand up for disAbility rights. If I have to write a letter to the "big dogs" by all means I will. If I have to chastize a co-worker for making fun of special needs with a special olympics crack similar to Barack Obama's, then by all means I will. Even if it risks being ousted at work.. even if he makes an ass of himself then later apologizes to me. If I have to explain for the millionth time that my child has autism and is not simply a brat, I will so I can educate those who are not as lucky as me to be gifted with the most loving child on earth. If I have to make a status post on facebook for friends to stop taking an offensive quiz then I will, because if they are friends they would apologize and think twice next time which is the whole point of disAbility rights is so we can change the way people think and act towards people with disAbilities. It's worth me standing up for, I am not talking just Autism, I am talking about all kids with special needs. It is worth everyones time. Please think about this next time you see someone in a wheelchair, having a major meltdown in the store, licking the shopping cart, flapping their arms, screaming, blowing raspberries, doing anything out of the ordinary that they are human, they are not animals and we should not treat them as such. They have thoughts, they have dreams, they notice when people are staring, you CAN talk to them.. you won't get their disease trust me. Just treat them like any other human being.. They might ignore you.. they might not even acknowledge your presence but I will say there's no way you can tell me they can't hear you.. even if they are hard of hearing.. they hear your compassion, they hear your thoughts.. They also hear those who walk by with stares and glares and comments and general disregard. Which do you want to be? the compassion or the stares?

disAbility = ABILITY


Tricia said...

You are on my mind big time.. if you need me. I am here. I love ya!!! You have helped me so much lately. .more then you know. It took me way too long to realize that I had such a good friend, please let me know if you need me :o)

Tutu said...

That was amazing. Very well written and heartfelt. It brought tears to my eyes!

Kristine said...

Thanks for sharing this, Crystal.

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