I accept your existence. I give you permission to think what you like, judge what you see, and behave accordingly. I do not however have to respond to your negativity in any way, nor do I have to conform to your imaginary standards. I do not need your approval, and although I would like it,
I know that it is foolish to try and Force it. I will not be making excuses.
I will share my viewpoints openly, honestly, and as politely as I can
however, how you choose to interpret my words is not my problem.
It is not my responsibility to act/talk/write/ or behave in a certain manor to make you feel more comfortable.
(although I will try)
I forgive you for your judgment. I let go of the hurt, and try to connect with the understanding that I was once like you. Jaded, sad, angry and scared, and I have many days where I still feel that way.
I feel bad that you do not feel like you can let go of your pain. I would love to help.
I would love to talk to you if you would give me a chance.
your pain does not make you who you are..
Insulting others does not make you feel better about yourself.
I hope that this is just a stumbling block on the road to becoming a happier and friendlier person.
I wish I could show you the beauty I see, the sadness, the openness, the connected of all things.
we are the same you and I. Behind the judgement, behind the criticism, we are passionate caring people. Its my hope that in writing this, I always remember before I criticize, judge, or condemn you for your opinions and actions, that I was like you.
I thought the world was all competition, and that all that tree-hugging-hippie-spirit-crap was all nonsense to sell books to granola eating hipsters.
I onced believed that there was nothing more important in life then "being successful" "making it" and chasing your dreams.
I still believe this, although my definitions have changed over the years.
I still like music, movies, good friends, coffee, sunshine.
I still grumble sometimes when It rains, or when someone forgets to call.
the only real difference is, now when it rains. I enjoy it. when the phone call doesn't come, I read, or go for a walk, or do the dishes.
I've learned to fill the spaces with something more satisfying then complaining.
I hope that one day you will too, not because I'm being pretentious, but because I honestly wish that everyone in the world would just allow themselves these incredible little moments of Joy.
Let yourself play. Play with your kids, If you don't have kids, go play with someone else's kids. take the dog for a walk, listen to your favorite music, and dance silly.
because it makes you happy. Do whatever it is makes you the happiest.
And the next time you feel that need to criticize, to judge, to condemn, someone else
take a deep breath..and think of something that makes you happy, and do that instead.
I promise, you will achieve much better satisfaction , then trying to "prove a point" over the internet.
:) <3 (and all that hippie crap)
The Everyday Adventures of a "weird" mom, trying to raise "normal" kids, "naturally"
Sunday, July 8, 2012
Monday, July 2, 2012
full circle
So It's been a while eh? yea,
I haven't had the Urge to blog about anything in a long while. nothing quite "fit". I was so unaware of how nervous, or limiting just having a blog was. "what do I write?" How should I write it?" does it sound ok" what are other people going to think of me If and when I post this? am I posting to much? too little? am I making a difference? is anyone reading this" does it matter if anyone reads this?"
ugh. so I put it up for a long while.
and went off on a journey of self-discovery instead.
And now that I have "lost" my "self" what is left of it..is here, (sometimes) to share a bit of my discovery with you. (whoever you are that is reading this).
what is a story without a listener? without an imaginer? without the pictures in your head that sing and dance with aliveness upon reading an authors tale? what is art without the veiwer? can it even be classified as art if there is no one there to witness it? ahh the questions...all the questions..they will drive you mad..if your seeking answers..you should probably go somewhere else. all I have for now is questions...
and a few insights.
As I said previously I have been on a journey of self discovery. I went deep, pulled away everything expecting to find some sort of ever present light or happyness underneeth it all. Imagine my surprise when it was just floor, just dirt..just nothing...
but wait. dirt isnt nothing..
it's made of thousands of tiny organisms, of plants, of energy...of bacteria, its home for insects and the foundation from which we lay our feet...it's the beginning of everything.
It's all like that. the closer you look at something the more infinate it becomes..
Its enough to make you crazy Drawing spirals on the wall and mumbling to yourself sort of crazy.
that is If your trying to make it "mean" something.
you dont have to make it "mean" anything. you cant. how can you give "meaning" to anything. It already has meaning. Already has a purpose. If It didint It wouldnt exist
wait...this also applies to people. to the soul, to experience, to birds, to rain.
(HOLY!@#!$ BATMAN)
this applies to EVERYTHING..
Whoa.
ok. so hold on..slow down. don't get excited. you dont have to. yes, this applies to you too.
("yes, but what does it mean basil?") elementary dear Watson!
It doesnt "mean" anything.
It just is.
and that's it. nothing "needs" to be done about it. there is nothing that can be "done about" what is. It just is.
and in the stuff that "IS" is endless, changeless, eternal. for It Always Is. If you can experience it. then it exists.
If you say to yourself.. I am. there is another you saying that to yourself. that just is...
totally pointless really.
but It's the kind of truth that tears apart all illusion and need for illusion..
so yea, If you havent had this understanding before. try feeling your toes. (yes, It's silly, do it anyway), ok, now your legs, then your knees, and so on up to your head, and down to your hands and fingers..feel everything along the way. no need to think, doesnt matter if you do. no weird visualizations..Its just you, where ever you are right at the moment you are reading this.
thats you.
yup, the "thinking" part..the one that is saying "this is silly" that's you too. but thats the "storyteller" the announcer, the one who puts words to things. and even though the Storyteller is always telling you things..Its all exaggerated, Its all part of the authors need to make the story "more interesting" more "exciting" more "dramatic" and more "real" then it is. Its fiction. the things you tell yourself about yourself are fiction. they are not you.
even without the story. you are still you. even when you tell yourself things..even when you blame others..even when you think you cannot handle change, loss, dispare..
you still exist to feel these things. you still have toes, they still stand on the ground..and beneath the floor, the dirt, ;) the nothing...
I haven't had the Urge to blog about anything in a long while. nothing quite "fit". I was so unaware of how nervous, or limiting just having a blog was. "what do I write?" How should I write it?" does it sound ok" what are other people going to think of me If and when I post this? am I posting to much? too little? am I making a difference? is anyone reading this" does it matter if anyone reads this?"
ugh. so I put it up for a long while.
and went off on a journey of self-discovery instead.
And now that I have "lost" my "self" what is left of it..is here, (sometimes) to share a bit of my discovery with you. (whoever you are that is reading this).
what is a story without a listener? without an imaginer? without the pictures in your head that sing and dance with aliveness upon reading an authors tale? what is art without the veiwer? can it even be classified as art if there is no one there to witness it? ahh the questions...all the questions..they will drive you mad..if your seeking answers..you should probably go somewhere else. all I have for now is questions...
and a few insights.
As I said previously I have been on a journey of self discovery. I went deep, pulled away everything expecting to find some sort of ever present light or happyness underneeth it all. Imagine my surprise when it was just floor, just dirt..just nothing...
but wait. dirt isnt nothing..
it's made of thousands of tiny organisms, of plants, of energy...of bacteria, its home for insects and the foundation from which we lay our feet...it's the beginning of everything.
It's all like that. the closer you look at something the more infinate it becomes..
Its enough to make you crazy Drawing spirals on the wall and mumbling to yourself sort of crazy.
that is If your trying to make it "mean" something.
you dont have to make it "mean" anything. you cant. how can you give "meaning" to anything. It already has meaning. Already has a purpose. If It didint It wouldnt exist
wait...this also applies to people. to the soul, to experience, to birds, to rain.
(HOLY!@#!$ BATMAN)
this applies to EVERYTHING..
Whoa.
ok. so hold on..slow down. don't get excited. you dont have to. yes, this applies to you too.
("yes, but what does it mean basil?") elementary dear Watson!
It doesnt "mean" anything.
It just is.
and that's it. nothing "needs" to be done about it. there is nothing that can be "done about" what is. It just is.
and in the stuff that "IS" is endless, changeless, eternal. for It Always Is. If you can experience it. then it exists.
If you say to yourself.. I am. there is another you saying that to yourself. that just is...
totally pointless really.
but It's the kind of truth that tears apart all illusion and need for illusion..
so yea, If you havent had this understanding before. try feeling your toes. (yes, It's silly, do it anyway), ok, now your legs, then your knees, and so on up to your head, and down to your hands and fingers..feel everything along the way. no need to think, doesnt matter if you do. no weird visualizations..Its just you, where ever you are right at the moment you are reading this.
thats you.
yup, the "thinking" part..the one that is saying "this is silly" that's you too. but thats the "storyteller" the announcer, the one who puts words to things. and even though the Storyteller is always telling you things..Its all exaggerated, Its all part of the authors need to make the story "more interesting" more "exciting" more "dramatic" and more "real" then it is. Its fiction. the things you tell yourself about yourself are fiction. they are not you.
even without the story. you are still you. even when you tell yourself things..even when you blame others..even when you think you cannot handle change, loss, dispare..
you still exist to feel these things. you still have toes, they still stand on the ground..and beneath the floor, the dirt, ;) the nothing...
Wednesday, June 6, 2012
communication difficulties..
Had our well-baby checkup with the doc today. Well, what I thought was a well-baby check up anyway. Turns out it was a Surprise! speech Evaluation! yay! *sarcasm*.
My little guy has been talking for a year now, but he hates it. Honestly he just doesn't like talking or the English Language. I dont really blame him. He has had a speech delay, that we have been working on, and he is progressing just fine. He does really well with communication when he needs to, and IF you are willing to communicate with him on his level. He is a bit quirky. He says "da" instead of "yes" "Da" Is yes in russian. and has the strangest grammer structure I have ever seen. (granted he's 2 1/2 so he has a ways to go). Yesterday his big sis was making him a paper airplane, and He spouted off.. You make ball me? (ball being his word for toy or play). It's sort of english...but when he strings the words together..the subject of the sentence, or the person speaking it, almost always gets placed at the end. He's great with understanding. (watch out what you say around my kid because he understands English like a 5 year old, not a 2 year old). But he just doesn't talk. he knows words, he knows phonics, but for whatever reason...he just refuses to use them. The docs are stumpped, the speach therapists are confused. He just wont speak English. I think that I need to find a language that would more comfortably fit his understanding of the grammatical structure, so maybe a speech pathologist? Linguist? anyone a Language geek out there who might be able to help me out?
The funny part is. He has no problems what so ever communicating with us. He can understand and follow multi step directions, has a wicked long memory, and will learn and pick up new information like a sponge.
He just doesnt like talking. And when he does have something to say...Its not english. It's another language with English words. heh.
Trying to explain that to bureaucrats, and doctors has seemed almost impossible. They cant seem to get their heads around it, and instead are asking us about our plans for early-pre-preschool.
I know he is talking..I know that If I find the right language..that he would love words..I just dont know where to look.
I feel bad for him. No one expects him to understand them, because he doesnt speak "their language" so when the Doc says.."do you want to go for a walk?" and he excitedly says "da" and then she walks him around the corner and stops to look at stickers....she cant figure out why he is throwing a temper tantrum..
duh, you asked him if he wanted to go for a walk..not name everything in the office. *sigh*
I'm not sure he is the one having a communication problem here...
My little guy has been talking for a year now, but he hates it. Honestly he just doesn't like talking or the English Language. I dont really blame him. He has had a speech delay, that we have been working on, and he is progressing just fine. He does really well with communication when he needs to, and IF you are willing to communicate with him on his level. He is a bit quirky. He says "da" instead of "yes" "Da" Is yes in russian. and has the strangest grammer structure I have ever seen. (granted he's 2 1/2 so he has a ways to go). Yesterday his big sis was making him a paper airplane, and He spouted off.. You make ball me? (ball being his word for toy or play). It's sort of english...but when he strings the words together..the subject of the sentence, or the person speaking it, almost always gets placed at the end. He's great with understanding. (watch out what you say around my kid because he understands English like a 5 year old, not a 2 year old). But he just doesn't talk. he knows words, he knows phonics, but for whatever reason...he just refuses to use them. The docs are stumpped, the speach therapists are confused. He just wont speak English. I think that I need to find a language that would more comfortably fit his understanding of the grammatical structure, so maybe a speech pathologist? Linguist? anyone a Language geek out there who might be able to help me out?
The funny part is. He has no problems what so ever communicating with us. He can understand and follow multi step directions, has a wicked long memory, and will learn and pick up new information like a sponge.
He just doesnt like talking. And when he does have something to say...Its not english. It's another language with English words. heh.
Trying to explain that to bureaucrats, and doctors has seemed almost impossible. They cant seem to get their heads around it, and instead are asking us about our plans for early-pre-preschool.
I know he is talking..I know that If I find the right language..that he would love words..I just dont know where to look.
I feel bad for him. No one expects him to understand them, because he doesnt speak "their language" so when the Doc says.."do you want to go for a walk?" and he excitedly says "da" and then she walks him around the corner and stops to look at stickers....she cant figure out why he is throwing a temper tantrum..
duh, you asked him if he wanted to go for a walk..not name everything in the office. *sigh*
I'm not sure he is the one having a communication problem here...
Monday, June 4, 2012
Before the Change...
So a bit of an update. A lot has been going on in my life that has been blogworthy, but I havent had any time to really write about it. I am now a member of 4 different FB groups, 3 different websites, and have found many many new friends who I have been in communication with.
The last few weeks have been tough. DH and I almost split for good, JP is struggling through her last year of public school, and LB is...a toddler. lol.
I have been so busy with my personal development, and keeping up with all my new friends that the blog has taken a back seat for a while.
thats ok. I can accept that.
I'm finding out that I can accept alot of things. I can accept who I am now. I can accept who my children are now, I can accept who DH is now, and we can all work together for a greater understanding of who we are as a Family NOW.
I believe in the power of NOW, Now is such a potent Idea..Its addictive. There is no thing you "should" be doing right now, If you "should" be doing it. You "would" be doing it. I am writing on this blog because that Is what I am doing. And I enjoy it. I accept it. I let the ideas of "dishes" and "productivity" fall away and I do what I enjoy, and I enjoy what I do (yes this includes dishes).
It's amazing. I have my faith back.I have my community of loving and supporting people. I dont "want" for anything. I have no "desire" to "want" for anything.
It's incredible.
and It's incredibly hard to stay here. Its hard to keep my center, and not worry about the fact that the dishes will be done because I will do them, not because I will worry about doing them or not. heh.
seems incredibly simple. Problem is, we live in a world full of " worry for the future" mentality, Worry for your "job" worry for your "children" worry for your "friends" Worry for your "body" worry about everything.
I'm sorry. I'm just not built to run on "worry". I dont reconise this "future" that everyone is so worried about.
If you do the things you need to do, want to do, now. then there is no need to worry about a "future". the future will happen regardless. Best to make the best out of NOW.
and thats it isnt it? thats the secret to everything.
still cant shake the uglyness I was exposed to this morning. It's kinda become a "thing" for me that I can see amazing progress for LB in everything he does, and other folks want to focus so hard on all the things he is "suposed" to do, that they just miss all the wonderful things he is doing NOW. ahh well. It's a shame I suppose. The machine just doesnt know how to let go, It doesnt know when Its job is over, and when its time to do something else. I know that we have achived all we can with his OT , and instead of celebrating his progress, and success, all our OT can focus on is..when is he starting more programs. It kinds makes me a little sick. Its more sad really. Its mostly sad for him. I hope that as we travel this road together that we will be able to find an understanding community that supports and celebrates his accomplishments with him...not move him onto the next program without a blink....I dont work at that level. I dont recognize a "future" or a "box" to stick my son into, or for anyone. What matters is, right NOW, the difficulties we face NOW the accomplishments and progress we make NOW, Who we are, right this very minute.... and I am so tired of being flung into a life surrounded by other people who are trying to make desperate grabs to control the future. I am done with Early Intervention. I am done with the "think of the future" additude. If I spent all my time worrying about his Future, I would miss his whole life. I am so happy to have him in my life, I'm not going to trade it away with worry. I will rise to the challenge of what he needs, Now, what he is, NOW, and love him. because thats what he needs more then anything....right now... And Right now, he needs a sandwitch so I am going to stop typing and make him a snack. :)
The last few weeks have been tough. DH and I almost split for good, JP is struggling through her last year of public school, and LB is...a toddler. lol.
I have been so busy with my personal development, and keeping up with all my new friends that the blog has taken a back seat for a while.
thats ok. I can accept that.
I'm finding out that I can accept alot of things. I can accept who I am now. I can accept who my children are now, I can accept who DH is now, and we can all work together for a greater understanding of who we are as a Family NOW.
I believe in the power of NOW, Now is such a potent Idea..Its addictive. There is no thing you "should" be doing right now, If you "should" be doing it. You "would" be doing it. I am writing on this blog because that Is what I am doing. And I enjoy it. I accept it. I let the ideas of "dishes" and "productivity" fall away and I do what I enjoy, and I enjoy what I do (yes this includes dishes).
It's amazing. I have my faith back.I have my community of loving and supporting people. I dont "want" for anything. I have no "desire" to "want" for anything.
It's incredible.
and It's incredibly hard to stay here. Its hard to keep my center, and not worry about the fact that the dishes will be done because I will do them, not because I will worry about doing them or not. heh.
seems incredibly simple. Problem is, we live in a world full of " worry for the future" mentality, Worry for your "job" worry for your "children" worry for your "friends" Worry for your "body" worry about everything.
I'm sorry. I'm just not built to run on "worry". I dont reconise this "future" that everyone is so worried about.
If you do the things you need to do, want to do, now. then there is no need to worry about a "future". the future will happen regardless. Best to make the best out of NOW.
and thats it isnt it? thats the secret to everything.
still cant shake the uglyness I was exposed to this morning. It's kinda become a "thing" for me that I can see amazing progress for LB in everything he does, and other folks want to focus so hard on all the things he is "suposed" to do, that they just miss all the wonderful things he is doing NOW. ahh well. It's a shame I suppose. The machine just doesnt know how to let go, It doesnt know when Its job is over, and when its time to do something else. I know that we have achived all we can with his OT , and instead of celebrating his progress, and success, all our OT can focus on is..when is he starting more programs. It kinds makes me a little sick. Its more sad really. Its mostly sad for him. I hope that as we travel this road together that we will be able to find an understanding community that supports and celebrates his accomplishments with him...not move him onto the next program without a blink....I dont work at that level. I dont recognize a "future" or a "box" to stick my son into, or for anyone. What matters is, right NOW, the difficulties we face NOW the accomplishments and progress we make NOW, Who we are, right this very minute.... and I am so tired of being flung into a life surrounded by other people who are trying to make desperate grabs to control the future. I am done with Early Intervention. I am done with the "think of the future" additude. If I spent all my time worrying about his Future, I would miss his whole life. I am so happy to have him in my life, I'm not going to trade it away with worry. I will rise to the challenge of what he needs, Now, what he is, NOW, and love him. because thats what he needs more then anything....right now... And Right now, he needs a sandwitch so I am going to stop typing and make him a snack. :)
Saturday, May 19, 2012
Friday, May 11, 2012
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...
;)
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...
;)
Wednesday, May 9, 2012
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 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.....
Tuesday, May 8, 2012
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".
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..
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!
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".
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..
Internet Explorer: A More Beautiful Web
(do not click link below unless you can handle deep epic awesome)
Wednesday, May 2, 2012
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.
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.
Sunday, April 29, 2012
To “I Wish I Didn’t Have Aspergers”: An #AutismPositivity2012 Flash Blog Event
Dear "I wish I didn't have Aspergers",
I'm sorry that people have treated you badly, or inferior, or aggressively, because they thought you were "different" and told you so. I'm sorry that you have been ignored, mistreated, misunderstood, and taken advantage of. I'm sorry that the people who you wanted to feel close to, rejected you, made fun of you, and belittled you because of who you are.
but...Please dont blame yourself for the negative actions of others. It's not your fault. It's not your "Label". Its the fault of other people who could not be bothered to take the time to get to know what an Amazingly AWESOME person you really are. And you are Awesome. because just by hitting the internet and typing out a term in a search bar like "I wish I didint have Aspergers" shows a desire to connect, to be understood, to understand yourself, and to find a community that understands you.
Bravo! that takes alot of courage!
And we are here, EVERYWHERE, not just the ASD/Aspie community, but the LGBT, the GEEK, the NERD, the DORK, the Cosplayers, the Furries, the Fairys, the pagans, the christians, the blacks, the whites, and even the so called "normals" Everyone is just trying to find a place where they "fit". Everyone is looking for that same connection, because at one time in our lives, we have all be belittled, rejected, ignored, and made fun of for who we are, and what we believe.
YAY internet! Finally a place where everyone can go. to find a place to "fit" within a community.
and don't get me wrong, finding local folks who are supportive of you is important, but dont ignore the support that you already have because it's not the type of support that you want.
YOU ARE NOT ALONE. YOU NEVER WERE. THERE ARE MILLIONS OF PEOPLE OUT THERE WHO ARE NOT JERKS, WHO ARE CAPABLE OF UNCONDITIONAL LOVE, AND WHO WILL LOVE YOU AND ACCEPT YOU FOR WHO YOU ARE, NOT WHAT YOU ARE "CALLED". YOUR BRAIN IS BEAUTIFUL, YOU ARE BEAUTIFUL, AND THERE ARE MILLIONS OF PEOPLE OUT THERE WHO ARE WAITING TO SEE WHAT YOU CAN DO....
and the best part is..all you have to do. Is be your self.
There are lots of crappy people out there who will only be able to focus on what they perceive you "cant" do. But there are even more out there who will see you for what you "can" do, and who you "are" instead of what you "will be".
You are Amazing right now. You are Awesome right now. You are full of love and light and character, and ideas, and talents. Right Now! don't give up because someone told you "your not good enough/smart-enough/pretty-enough/well-spoken-enough/ YOU ARE ENOUGH, YOU ARE AWESOME RIGHT NOW.
but if you cant see that, If you have to look at yourself through the eyes of "others" Look here, Look at the Awesome community who loves and supports you...Right now
and All you did was type "I wish I didint have Aspergers" in a google search.
see, I told you that you were amazing...
Saturday, April 28, 2012
11:54 PM
I am writing this from the 2nd story of our local Hospital. I am staying here for the time being with Littlebear who has contracted some sort of strange prehistoric cold, and Is being monitored for progress over night.
I am here alone with LB, while DH is with JP at home. It's ok. His Aunt works on our floor tonight, and she was Awesome enough to rock him to sleep when I couldnt get him to sleep for me this evening. (not that I blame him, you should see the "baby cage" they expect him to sleep in.) If I had a werewolf baby, this thing may had made sense, but for an ordinary kid, Steal bars just seem a bit over-kill.
He took my bed instead.
I'm in a rocking chair. drinking weakly brewed coffee, and trying to type as silently as I possibly can, while I wait for a friend to drop off some cash from DH because he is stuck at the house with JP while I am stuck here with LB. (yea, I know should have thought this out better).
there wasnt alot of time for preparations. LB had his early intervention team meeting just like every week. and then soon after it was over, LB started coughing worse, and made these weird heaving breathing noises. Buy the time I had him wrapped up and ready to go, he was just focused on breathing..given the mucus..I can understand why he was having such a time with it. He gets colds from time to time, and usually they are not a big deal, I just bundle him up, and take him outside for a while. DH was on a confrense call for work, so Instead of interrupting him with "hey your baby is dying again" I just packed him into the stroller and headed towards the hospital. He was breathing well, just not having a happy time of things. (If it had been worse, I would have called a bus). I figured that he would clear up before we got there, but he decided to stay.
I didint think it was any big deal. Just an inhaler, an antibiotic, and possibly a shot o steroid like last time.
and yea, they did that. and a 2 hour antibiotic drip after they had put in an IV. And then told us that If he didint clear by 5 o clock, that we would have to stay over night.
He was admitted to the ER at 11:30 Am. Its now Midnight, and we are still here. Thankfully he is doing better, (and sleeping well for the time being).
I'm trying to enjoy the flat coffee, and ignore the blinking lights on the monitor that publish his heart rate and Oxygen stats. I dont know how I'm going to sleep. (he took the bed, so I guess I get..the cage?).
(Edit :Update) We slept through the rest of the night, and although it was interrupted sleep (nurses checking in every 1/2 hour) there were no further problems, and we were discharged a little after noon the next day. they sent us home with a nebulizer, a pack of albuterol, an inhaled steroid, and some really scary "cough medicine" that thankfully he doesnt need. He is sleeping now and breathing well. so even though It was a most uncomfortable situation we are all doing much better.
Now I'm going to sleep, in my own bed, after drinking my own brand of coffe, and possibly eating a ton of my own ice cream.
I am here alone with LB, while DH is with JP at home. It's ok. His Aunt works on our floor tonight, and she was Awesome enough to rock him to sleep when I couldnt get him to sleep for me this evening. (not that I blame him, you should see the "baby cage" they expect him to sleep in.) If I had a werewolf baby, this thing may had made sense, but for an ordinary kid, Steal bars just seem a bit over-kill.
He took my bed instead.
I'm in a rocking chair. drinking weakly brewed coffee, and trying to type as silently as I possibly can, while I wait for a friend to drop off some cash from DH because he is stuck at the house with JP while I am stuck here with LB. (yea, I know should have thought this out better).
there wasnt alot of time for preparations. LB had his early intervention team meeting just like every week. and then soon after it was over, LB started coughing worse, and made these weird heaving breathing noises. Buy the time I had him wrapped up and ready to go, he was just focused on breathing..given the mucus..I can understand why he was having such a time with it. He gets colds from time to time, and usually they are not a big deal, I just bundle him up, and take him outside for a while. DH was on a confrense call for work, so Instead of interrupting him with "hey your baby is dying again" I just packed him into the stroller and headed towards the hospital. He was breathing well, just not having a happy time of things. (If it had been worse, I would have called a bus). I figured that he would clear up before we got there, but he decided to stay.
I didint think it was any big deal. Just an inhaler, an antibiotic, and possibly a shot o steroid like last time.
and yea, they did that. and a 2 hour antibiotic drip after they had put in an IV. And then told us that If he didint clear by 5 o clock, that we would have to stay over night.
He was admitted to the ER at 11:30 Am. Its now Midnight, and we are still here. Thankfully he is doing better, (and sleeping well for the time being).
I'm trying to enjoy the flat coffee, and ignore the blinking lights on the monitor that publish his heart rate and Oxygen stats. I dont know how I'm going to sleep. (he took the bed, so I guess I get..the cage?).
(Edit :Update) We slept through the rest of the night, and although it was interrupted sleep (nurses checking in every 1/2 hour) there were no further problems, and we were discharged a little after noon the next day. they sent us home with a nebulizer, a pack of albuterol, an inhaled steroid, and some really scary "cough medicine" that thankfully he doesnt need. He is sleeping now and breathing well. so even though It was a most uncomfortable situation we are all doing much better.
Now I'm going to sleep, in my own bed, after drinking my own brand of coffe, and possibly eating a ton of my own ice cream.
Wednesday, April 25, 2012
Aspie at the Dentist (part 1)
I hate going to the Dentist. I have the worse Denist fear due to having a very aggressive one as a child. I have avoided going for so long, that I need to have alot of work done. I have never had a positive dental experience before. Ive been yelled at, laughed at, told "it doesn't hurt that bad" and so on..
I had a Dental appointment today.
As usual I had a panic attack before going. I'm used to that. I always have a "sudden attack of primordial fear" before I have to go see a stranger to poke at something that hurts with a pick. I'm pretty sure that's a normal reaction. (kinda like when you try to give a cat a bath).
I have been to this office before, so I knew what to expect. I had severe sensitivity in a few of my teeth that has been giving me pain for over a week, so I knew I needed to go.
I still couldn't shake the fear. I couldn't control it either. I should just get this out in the open. I'm a crier. I can't help it. I just cry over the dumbest things sometimes. I'm a very sensitive person. And When I'm scared, I cry.
Usually I have enough time before my appointment to get over the crying, and be almost through with the panic before I get there. This morning was the morning my Toddler refused to wear pants. I tried everything, and eventually we compromised by letting him wear his pajamas.
I was 10 mins late (I HATE BEING LATE)
and I was still crying. I didint feel fear, I was just crying. It was a nervous response. I couldn't stop it. I sat in the car for a few minutes (15 mins late now) to try to calm myself, and nothing was working.
so I went to my dentist appointment today. And cried the whole way through it. I cried at the reception desk, I cried waiting in the lobby, I cried during the cleaning, the X ray, and the checkout. I was still crying when DH came to pick me up. It was so strange. I'm a crier, but never like that. I NEVER cry in public If I can help it.
Here is the Awesome part though.. The assistants went out of their way to make sure that I was ok, and comfortable. they stayed with me in the room while I was waiting for the dentist, they talked to me about my Xrays, and told me before they touched my mouth in any way what they were doing, they brought me the national geographic magazine that I was trying to read in the lobby and wiped my tears from my face gently with gauze while the dentist worked on "checking my tooth sensitivity".
It was the most heartfelt, kind, gentle, and best treatment I have ever gotten at a dentists office EVER.
It's so nice to know that even In my worst state, they are still kind people in the world. I think I can make it through the sensory overload, and pain, much better now that I know that there are others who understand the stress I am going through.
I still hate going to the dentist. but I left absolutely glowing (still crying, but this time, It was more tears of joy and disbelief then fear). I felt like I had climbed a mountain.
All those years I "toughed it out" in public, All those years "faking it" and trying to pass off as "normal" and "unaffected" All those years I was afraid of what people would do if they ever "saw" the real me.
Here I was, Embarrassed, Scared, in pain...
and all I saw was Love.
I had a Dental appointment today.
As usual I had a panic attack before going. I'm used to that. I always have a "sudden attack of primordial fear" before I have to go see a stranger to poke at something that hurts with a pick. I'm pretty sure that's a normal reaction. (kinda like when you try to give a cat a bath).
I have been to this office before, so I knew what to expect. I had severe sensitivity in a few of my teeth that has been giving me pain for over a week, so I knew I needed to go.
I still couldn't shake the fear. I couldn't control it either. I should just get this out in the open. I'm a crier. I can't help it. I just cry over the dumbest things sometimes. I'm a very sensitive person. And When I'm scared, I cry.
Usually I have enough time before my appointment to get over the crying, and be almost through with the panic before I get there. This morning was the morning my Toddler refused to wear pants. I tried everything, and eventually we compromised by letting him wear his pajamas.
I was 10 mins late (I HATE BEING LATE)
and I was still crying. I didint feel fear, I was just crying. It was a nervous response. I couldn't stop it. I sat in the car for a few minutes (15 mins late now) to try to calm myself, and nothing was working.
so I went to my dentist appointment today. And cried the whole way through it. I cried at the reception desk, I cried waiting in the lobby, I cried during the cleaning, the X ray, and the checkout. I was still crying when DH came to pick me up. It was so strange. I'm a crier, but never like that. I NEVER cry in public If I can help it.
Here is the Awesome part though.. The assistants went out of their way to make sure that I was ok, and comfortable. they stayed with me in the room while I was waiting for the dentist, they talked to me about my Xrays, and told me before they touched my mouth in any way what they were doing, they brought me the national geographic magazine that I was trying to read in the lobby and wiped my tears from my face gently with gauze while the dentist worked on "checking my tooth sensitivity".
It was the most heartfelt, kind, gentle, and best treatment I have ever gotten at a dentists office EVER.
It's so nice to know that even In my worst state, they are still kind people in the world. I think I can make it through the sensory overload, and pain, much better now that I know that there are others who understand the stress I am going through.
I still hate going to the dentist. but I left absolutely glowing (still crying, but this time, It was more tears of joy and disbelief then fear). I felt like I had climbed a mountain.
All those years I "toughed it out" in public, All those years "faking it" and trying to pass off as "normal" and "unaffected" All those years I was afraid of what people would do if they ever "saw" the real me.
Here I was, Embarrassed, Scared, in pain...
and all I saw was Love.
Monday, April 23, 2012
blogging, blogging, blogging...
Oh, wow! It's been a full 24 hours, and I still really like this blog. I can't believe it! I'm happy with the layout (for now) I'm happy with the interface, and I even have things to blog about that are showing up in my brain in an organized manor. (Halijula!)- I have no idea how to spell that word, my blogger spell checker thinks its (halibut). lol. (looked up how to spell halijula Its actually spelled. hallelujah so I don't know why blogger Spell check decided that I was trying to write about fish instead, but I find it pretty humorous. I think I'll just go around saying HALIBUT! from now on.
back to the blog.
It's rare for me to stick with something, and even like the idea after the majority of the thought has been expressed. I thought that I was "over" blogging. I thought that I didnt have anything to say and "no one would want to read it". Truth is, I was sabotaging my previous blogs, because I didint want to read it.
I would read all these wonderful amazing blogs, written by wonderful amazing people, about their wonderful and amazing lives, wishing I could be that happy, that I could write that well, that I could express myself without stumbling all over my own thoughts. (which even now are bringing me back to "halibut")
but the more time I spend reading blogs, and posts, and articles, the more I think. "My voice is missing".
I do have things to say. I have lots of things to say. I discovered that I am also a "needed" part of the conversation. I have a right to speak my mind about things I feel passionate about, just like anyone else.
I have a right to my opinions, thoughts, and beliefs, just like anyone else.
Mostly I discovered that my life Was Amazing, and worth writing about.
I'm Awesome, and I have a ton of experience to share, as a mom, as a woman, and more importantly as a compassionate, understanding, and accepting human being.
I have the same problem with social networks as I do in the real world. They just don't seem to "fit" me. Social networks are Awesome! but each and every one of them has limitations that limit my expression. With Twitter its 140 char. With FB its well..the people on FB. and I have no idea what Google+ is anymore.
I like blogs. I can say what I want. Type as long as I want. I wont get flamed for having an unpopular opinion, because, hey, It's my blog. If you don't like it. dont read it.
but I hope you will.
Because I will, And I will read and respond to every comment (assuming they are not hateful) and I will try to answer every question. I hope to always be as honest as possible, and as expressive as possible. If I want others to understand my point of view, you have to understand how I "see" the world, and the only way to do that, Is to be as rawly me as I can (yes, made up words and all).
And hope that you like it. :)
(and if you want to find me on the other sites, click the links above or google strawberryskycat or skycat on the interwebs and If you still cant find me, drop me an email at awesomesauceadventures @ hotmail . com)
back to the blog.
It's rare for me to stick with something, and even like the idea after the majority of the thought has been expressed. I thought that I was "over" blogging. I thought that I didnt have anything to say and "no one would want to read it". Truth is, I was sabotaging my previous blogs, because I didint want to read it.
I would read all these wonderful amazing blogs, written by wonderful amazing people, about their wonderful and amazing lives, wishing I could be that happy, that I could write that well, that I could express myself without stumbling all over my own thoughts. (which even now are bringing me back to "halibut")
but the more time I spend reading blogs, and posts, and articles, the more I think. "My voice is missing".
I do have things to say. I have lots of things to say. I discovered that I am also a "needed" part of the conversation. I have a right to speak my mind about things I feel passionate about, just like anyone else.
I have a right to my opinions, thoughts, and beliefs, just like anyone else.
Mostly I discovered that my life Was Amazing, and worth writing about.
I'm Awesome, and I have a ton of experience to share, as a mom, as a woman, and more importantly as a compassionate, understanding, and accepting human being.
I have the same problem with social networks as I do in the real world. They just don't seem to "fit" me. Social networks are Awesome! but each and every one of them has limitations that limit my expression. With Twitter its 140 char. With FB its well..the people on FB. and I have no idea what Google+ is anymore.
I like blogs. I can say what I want. Type as long as I want. I wont get flamed for having an unpopular opinion, because, hey, It's my blog. If you don't like it. dont read it.
but I hope you will.
Because I will, And I will read and respond to every comment (assuming they are not hateful) and I will try to answer every question. I hope to always be as honest as possible, and as expressive as possible. If I want others to understand my point of view, you have to understand how I "see" the world, and the only way to do that, Is to be as rawly me as I can (yes, made up words and all).
And hope that you like it. :)
(and if you want to find me on the other sites, click the links above or google strawberryskycat or skycat on the interwebs and If you still cant find me, drop me an email at awesomesauceadventures @ hotmail . com)
Sunday, April 22, 2012
Hajimemashite!
That's how the Japanese say " hello, nice to meet you for the first time! "
I'm strawberryskycat ( ichigo sora neko), or skycat for short.
hajimemashite!! *bows* Nice to meet you.
I'm not usually much for intro posts. I find it incredibly awkward to have a public one sided conversation with myself. Since I have to make an introduction, here are the basics.
I am a female (whoa! there are girls on the internet? no way!)
I self identify as both Aspie, geek, and AWESOME.
I love cats and Japanese Culture.
I drink WAY too much coffee.
I live in the north east united states, in a small rented house, in a small town/city
With my best friend and Hetrosexual life partner, and our 2 children.
Our oldest is a firecracker with a quick wit, and awesome sense of humor. She loves Star-wars, drawing, photography, robots, and fuzzy little animals.
( refered to here as Jediprincess or JP for short)
Our youngest, is our little engineer, he loves how things work, and will take apart everything in sight just to figure out how. He digs bluegrass and cars, and loves the color red. He also gives the best hugs in the world. (we call him littlebear or LB for short)
We don't have any pets other then the strange neighborhood tabby cat that has seemed to adopted us.
(We like her. We feed her tuna and named her "sparks")
As for the blog, I decided that there were not enough Women/Aspie/Parents of kids on the spectrum out there lending our voices to the "Autism Conversation".
Also our LB suffered a brain Injury shortly after he was born which affected the right side of his body. (hemiparisis). (en.wikipedia.org/wiki/Hemiparesis)
Most of my Adult conversation now revolves around my son and his sensory/muscular issues, and his speech delay instead of the normal everyday stuff that other parents of 2 somethings talk about.
I find it hard to participate in "normal" baby conversation, and while I have found some amazing and helpful support groups online (http://www.chasa.org/), sometimes I just have more to say then things I can fit in a social networking post.
so I made a blog. If you read it, then, well, YOUR AWESOME. and thank you for doing so.=^..^=
I hope you enjoy It
:)
I'm strawberryskycat ( ichigo sora neko), or skycat for short.
hajimemashite!! *bows* Nice to meet you.
I'm not usually much for intro posts. I find it incredibly awkward to have a public one sided conversation with myself. Since I have to make an introduction, here are the basics.
I am a female (whoa! there are girls on the internet? no way!)
I self identify as both Aspie, geek, and AWESOME.
I love cats and Japanese Culture.
I drink WAY too much coffee.
I live in the north east united states, in a small rented house, in a small town/city
With my best friend and Hetrosexual life partner, and our 2 children.
Our oldest is a firecracker with a quick wit, and awesome sense of humor. She loves Star-wars, drawing, photography, robots, and fuzzy little animals.
( refered to here as Jediprincess or JP for short)
Our youngest, is our little engineer, he loves how things work, and will take apart everything in sight just to figure out how. He digs bluegrass and cars, and loves the color red. He also gives the best hugs in the world. (we call him littlebear or LB for short)
We don't have any pets other then the strange neighborhood tabby cat that has seemed to adopted us.
(We like her. We feed her tuna and named her "sparks")
As for the blog, I decided that there were not enough Women/Aspie/Parents of kids on the spectrum out there lending our voices to the "Autism Conversation".
Also our LB suffered a brain Injury shortly after he was born which affected the right side of his body. (hemiparisis). (en.wikipedia.org/wiki/Hemiparesis)
Most of my Adult conversation now revolves around my son and his sensory/muscular issues, and his speech delay instead of the normal everyday stuff that other parents of 2 somethings talk about.
I find it hard to participate in "normal" baby conversation, and while I have found some amazing and helpful support groups online (http://www.chasa.org/), sometimes I just have more to say then things I can fit in a social networking post.
so I made a blog. If you read it, then, well, YOUR AWESOME. and thank you for doing so.=^..^=
I hope you enjoy It
:)
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