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.....
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