I not only suffer from being an autie with Asperger's syndrome (Adult diagnosed, 2003), I have several co-morbid conditions. These things are part of me, but are NOT me.
I have diabetes. I have asthma. I have fibromyalgia. I have anemia. I have depression with anxiety issues. There are more issues that clamor to be recognized but theses are the major ones. These things affect my daily living, how I treat the world, how I survive, how I form opinions to get by. These things affect how others perceive me.
Sigh, life is a daily struggle for me. I sometimes wonder what sense of humor God has to afflict someone with things that just make everything in life much more difficult. But despite all this, I can't resign myself to die. And perhaps for me, dying is not an option because I am much too chicken to even attempt it. I am scared of pain. And I carry enough pain everyday without adding to it.
I have little ones that are affected because of my having them. In my ignorance, I have inflicted my own disabilities on them. Innocent little ones who are suffering now because mommy didn't know. Major guilt, I love my kids. And they struggle every day, feeling alienated at school, feeling different, overloaded, overwhelmed, bullied and unappreciated. ( Much as I did) All I can say is that I wish people would look at why someone is as they are, and not just see that they are different.
If I could say anything to the general public it would be this...
Appreciate and value the people around you, you can uncover jewels in the roughest of dirt.
8 comments:
i am still waiting for someone to research why fibro and AS are so often comorbidities. my mother has fibro and other bodily discomforts and disorders that have previously been damned to "it's all in your head" type judgments. my own body feels like a wreck sometimes, too. i've always felt old and rusty, even when i was in my exercise routine, feeling much better than ever before... still, i felt like i was 45 or 60 with my joints... standing up after sitting a while... etc.
fibro and AS are connected. i have no doubts. but i also have no doctorate nor time and will to get one. no one listens to me. i offer up my ideas to those who could further the search and they just ignore it and keep trying to talk therapy me.
hopefully some time before we die, some genius who DOES have the stamina to do the work and get the credibility, will expose this great tapestry that i see, but cannot fully grasp (i'm woven into it and while able to see patterns wonderfully, i can't get enough distance to see the whole thing).
AS
fibro
BPD
bipolar
sociopathy
creativity
artistic temperament
the human brain when something very specific (though massively complex) goes "wrong"
i can almost grab it and show it to people.
almost.
it maddens me how close i am to understanding the human brain in a "forest for the trees" way, and how far i am from being allowed to live amongst all the other creatures who call themselves human beings, thinking they're normal.
You're so right: crying isn't enough any more.
i love your blog. thank you for being out here and speaking up.
Wow thank you, I personally believe (or at least the bio-techie part of me believes) that there is some sort of Adrenaline connection to all these too. Just a theory.
Also, don't blame yourself for ignorance or for bringing suffering to your children. it's an epidemic at this point. eventually there will be too many of "us" to simply ignore and discount. the real problem is helping the ones who are still forming, like your kids, to get to adulthood better equipped to deal with what they are in a world that is seemingly made for some other creature entirely. give them every bit of knowledge you can, ways to not dump the responsibilities of what feels like their own failures and their "differentness that makes them targets" ... enable them to get further than they would get, intellectually, emotionally, if you didn't know what you DO KNOW NOW.
many of those who have done me great harm are likely possessing brains and nervous systems much like ours. but they had less help or less ability to determine a from b and blue from red. they "went bad" out of defensive reflex. i don't hate the girls who have hurt me because i think they have many of the same problems that formed me into what i am. i understand myself out of hate for what they have done to me. i reserve hate for one human being alone. a male. pure sociopathic evil. but even he was formed. rare is it that evil is born. it's made.
we are only as screwed up as others make us and our ability to tolerate allows before we react as designed.
you are in a wonderful position to turn what you describe as something you inflicted upon your children, into something positive and brilliant. they don't need to go ignorantly into this world that acts hatefully. you know. you can share what you know. knowing can help them. it would have helped me.
don't cut yourself down for the way things are. be that positive and understanding answer, that knowledge... what wasn't there for us when we were growing into what we have become. the idea of helping the children with this.... thing... turn out better than i did is the only desire i still have at heart that still motivates me to TALK in a world of deaf and blind normals.
I believe that my beliefs that there is something different about me and my kids is what led me to be alone at this time. I am hoping that will change one day, but there's a lot that I need to accomplish for that to happen. At this point, I am trying to do the best for them I can. I have people that listen to me in the schools, and they are seeking answers for them. It may totally be too late for me,the only skills I have are basic routine day to day survival, nothing more.
i feel the same. day to day survival is about all there is left for me and i don't have willpower for it. i feel will power for others, though. which is weird.
maybe the weight on you will lift as you see your children grow and benefit from what we know now, but didn't know when we grew up...
Maybe so. I see my son improve, he doesn't hang his head down and ignore now. He will actually smile now. He will always be aspie, but he has much better skills and education than I do. My middle daughter is different, and although they say she is not on the spectrum, she has many many autistic traits, processing problems and learning disabilities. I want the energy to be their guide, but I've not found it yet.
energy to parent... that is something i wish i could say helpful words about. i'm not made for parenting. i think my genetics are so poor that the reproduction genetics are just plain turned off to protect the species!
i appreciate and admire the efforts and strain parents deal with but i don't think i have the needed ingredients to be one. i can barely handle the cat litter around here these days.
and that brings me right to the topic of loneliness. it's worse when doing things on your own. for sure. i have become dependent on my family due to combined efforts of bad relationships and sociopathic bosses. i could use a hand with life on the homefront.
yet, i also know a bunch of single mothers. how they have gotten as far as they have is a source of amazement to me.
people talk about the power of motherhood instincts... i know several single moms that this has kept alive and moving forward. it still is painful, though.
can i say "have faith in yourself and your children" without being too much a hypocrite?
i'm not good with hope and faith. but, i'll say the words:
here's to hoping that we find people to fill the empty spaces in our lives
I love my kids dearly, i have 3, one teen who lives with my abusive ex(she's always been a daddy's girl). And the two spectrumish little ones who are 10 and 7. They take a lot of energy, but at the same time, we relate, so they know I guess when to back off instinctively. But that said, there are days I can deal and days I can't. Today was a can't and went to bed early only to find myself awake again at an ungodly hour as usual.
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