Finally Someone is Listening!

I had a medication review for myself the other day at my primary care doctors. I have them every three or four months because of the pain medication I'm on for my TMJ pain.

There is always pain.

He asked how things were going with my psychiatrist and with my therapist. After hearing silence for a few too many seconds, he concluded that I am no longer seeing them. Or at least not my therapist. I told him the story of what happened. How I was unable to come up with a treatment plan goal at the 6 month review mark, and she became irratated with me and tossed her pen on her desk with an exasperated sigh. I asked her why I had to make new treatment plan goals, if the old treatment plan goals were never met? She insisted that they were met. I pointed at the paper and read.

"I will be able to leave the house and be social."  Well that's a bit generic don't you think?
"So how did I meet this goal?"  I said.
"You come here every month. I think you're doing much better. You're doing great. I don't see a problem with it. You've accomplished that goal." 
"No I haven't. You only see what I show you when I'm here. You don't realize that I showed only because I had this appointment. You don't see that this appointment was the big stressor all week long. You don't know how anxious I've been all week. All day. I have been unable to do anything all week because this one social outing is planned. And going to see my therapist shouldn't count as a social outing, but it does to me! So no, I don't see that things are any better with that goal. I don't want to change it." 
"Well you have to change it. You've accomplished it so we move on to the next one."
"You can't just tell me to move on to the next one if I don't feel like I've gained anything with this one."
"Then do something about it! Join a church! Join some support groups! Make some friends or something!"
"..... make some friends?! If making friends were that easy, don't you think I would have done that already? Maybe I wouldn't be here?"
"It is easy to make friends. You just don't want to. You enjoy being anti-social and have no real desire to leave the little bubble you're in. If you wanted to change and have friends and be social bad enough, you'd be able to do it." 

This was when she threw her pen at her desk/my direction since it bounced off and she sighed and huffed. I stopped trying to look at her. I gave up. I stared out the window instead. It was a nice day outside and the wind was blowing. It was sunny and bright. My heart sank as I heard her sigh again. So close and yet so far away. Things were going so well. Over a year I'd been seeing her. I trusted her. I should not have trusted. I gave therapy one final try like I promised my primary care psychisan I would, and it ended the same way they always do. With someone giving up on me.

I listened to her tap tap tap her pen that she'd recovered from the floor, on her desk over and over. It matched the movements I was making with my fingers on my pants, just above my knee. Back and forth, back and forth. I liked the feeling of the friction and how it heated up my hand. It was soothing. It was one of my less obvious self stimulatory movements, this particular one usually done when I was really nervous or tense.

I listened to her sigh again and felt her staring at me. I knew I should look at her, but I couldn't. It made me feel sick to my stomach to force myself to look at her eyes. It was easy to ignore the director in my head telling me what was socially expected, because I was hurt. I was not going to even try to look at her. I was going to stare out the window and watch the trees swaying and pretend she didn't exist. The voice wouldn't shut up in my head, so I decided something needed to be said. This uncomfortable silence must be broken. Obviously she was frusterated at me. So I pointed that out.

"I'm not sure why you're frustrated at me. You're the clinician. I'm the client. You appear to be more angry at me than you should be about this. These are my goals after all..."
"Yes! Yes I am angry and frustrated! You have so much potential and you just sit there and don't do anything with it! I'm frustrated for you! I.. I just.. I don't know what you want. You want to have friends but yet you won't take steps to make them, like going to events, or joining groups. I can't help you find friends if you don't want to be social. That's what having friends means! You have to be social to get them!"
"Then I guess I won't have any friends."
"I guess not! Thats entirely up to you. For now, we need to think of a new goal for you to achireve. I've got to put something down on the paper. We're running out of time. The session is almost over. Come on. Let's put something down. You know what? Just sign it and I'll write something in for you later. How's that sound? Just.. it doesn't matter. We have to put something in the blank."
"I'm not sure what to put. That was really the only goal I had."
"Then why won't I just discharge you then? Hmm? Is that what you want? Either find a new goal to write on the treatment plan or I'll discharge  you today. Whats it gonna be?... Yes? No? Discharge?"
"Whatever. Ya. Fine."
"You seem upset. You can stay, we just have to have a new goal."
"Nope. I'm good." I said as I continued to stare at the trees outside. I could feel that my lack of interest was also bothering her, but what could I do about it? She rejected my reality. Above all else, (short of honesty, which we all know is paramount for me.) I cannot stand it when someone else says that my reality isn't real. Its judgment in its purest form. Its hard to describe the feeling I get when someone tells me how I'm feeling isn't how I'm feeling, or that something that happened didn't happen. I feel angry. Furious! Then it changes to confusion. And confusion always leads to feeling scared and anxious. The quickest way to rock my world and shake my foundation is to do or say something that makes me feel confused and anxious. You know, something earth shattering like.. changing plans without telling me, or saying something that wasn't expected. Your typical normal every day earth shattering things..

Don't worry! My therapist said I was doing great remember?

At every appointment the nurse asks me how I'm doing, and I tell him. (He's completely 100% flamboyantly gay and I absolutely adore him.)  Every visit he says sympathetically, "Sounds like a pretty clear case of ADHD symptoms to me." We wait for the psychaitrst to come in, the nurse fills him in on everything including my symptoms and issues.

Every visit with the psychiatrist he would ask me how things were going. Even though the nurse just told him.(seems to be a typical doctor question, and most of the time they are not really concerned with how you're doing I've found. Its said automatically and I'm supposed to say "fine.")

I told the psychiatrist what I've told people for most of my life. That I'm tired of planning all the time. I feel like I have so many ideas, so many creative things "in the works" but nothing ever comes to fruition. I never see the end to any of my ideas. Most of the time I never even see it to the next level at all. I just sit here, research, and grind. My mind consumed with ideas and basically spinning in place. So much of my time is lost in research. I have a minimum of 35 Firefox pages up at one time. That's too many pages. Too many thoughts. Do I enjoy it that way? I do! Immensely! And I'm very upset if someone interrupts me during a crucial point in my research. Go ahead, you want to laugh. I can sense it. Its true though. I get so lost inside my own head and lost in what I'm Googling that its hard to put myself out of it. And I feel instant resentment towards whoever the offending person is.

I just wish I could take all that planning and thinking and processing to the next level. The doing level! As soon as I think about that part, I get anxious and quickly throw myself in any direction I can to swallow myself up in planning and research again.

Even writing this blog post alone has taken me two days so far. What might take someone else an hour or less to churn out, has taken me forever. Simply because I have to ruminate about every little thing. For all that time I'll bet you were expecting Shakespeare huh?

I just want to be able to relax. I want to watch my favorite tv show with a bowl of popcorn and actually watch it. Instead of just staring in the general direction (on a good night!) of the TV and thinking about things in my head. Usually I stand in front of my computer, perched neither here nor there. Half ways between enjoyment. Googling is fun and all, but I'd like to stop. But I can't. I can't turn it off at all. Truth be told I'm not even listening when people talk to me. Its a struggle sometimes to force myself to "tune in" to my kids when they talk. But I do it because I know I have to. There is no choice there. But its oh so hard..

Anyway, I've gone off on a tangent again. (you'll find I do that a lot) I made sure that every visit I told the psychiatrist how I was really feeling. And every visit he would find new ways to put me off and tell me I was an idiot. Some of the things he said were, "Great things are done by people like you." and "Try Chamomile tea." and "Just relax." Oh. Yes. Thank you! OMG! I can't believe that I didn't think of that! Just relax? Really?! OMG it worked! .... heh. I wasn't impressed.

So I decided one visit after I told him the Xanax was working as well as could be expected, and the dosage was fine. (He asked if it made me too sleepy. It did not.) to be more forward than I previously was and directly ask what I was wondering. I wanted to know how ADHD presented itself in women and if it looked differently. Of course, you know I already know the answer to that but I wanted to have a diolauge with the person that was supposed to be helping me. (I learned many years ago that doctors don't like it when I know more than they do and its often the quickest way to finding a new doctor...so I'm forced to pretend I know less than I do. I have to fly under the radar to even be listened to at all.)

Mr wonderful all knowing psychiatrist said, "You're sitting aren't you? You don't have ADHD. People with ADHD can't sit in chairs at all. Do you have friends? People with ADHD don't have any friends at all. What about school? You were good in school? Definitely not ADHD. Nope."

Must.. have... stimulants...

"Uh. Okay. I wasn't aware that being able to sit down was how things were ruled out according to the DSM.."  my voice tapered off until it was barely audible. I watched as he scribbled the same script for Xanax he'd been giving me, only with .5 mg's docked from it as some odd form of punishment for daring to ask about my treatment. I saw written in his chicken scratch  handwriting in the notes section of my chart, "Seeking stimulants."


"I'll see you back in four months!"  he said with a grin and the happiest sounding voice I'd ever heard.

I didn't even bother to look up from the floor. I was stunned. Shocked. Guilty. Ashamed. In the span of only seconds, I had convinced myself that he was right. I was nothing but a loser that was seeking some prescription drug high and how dare I? I should be ashamed of myself. By the time I reached the hallway, and passed the nurse who again looked at me with some odd mix of pity and sympathy, the anger had begun to set in. I made small circles over the smoothness of my thumbs. The feeling calmed me. It was less obtrusive and no one could see me doing that. I really wanted to rock back and forth, and while waiting to check out at the desk I caught myself doing it and was able to stop. I can't say anyone saw me do it and gave me dirty looks, because I don't look at them that closely. In fact, rarely do I look at anyone except my children.

Ashamed for no reason.

By the time I got in the car, the tears were falling and I had a hard time explaining to my husband why I was so upset. The feeling of being called a drug seeker, even on paper.. it was too much. The guilty feelings over things I didn't do have always confused me. Someday that's what I would like. I would like to feel less. Believe me. Just because people with autism don't always say they feel empathetic, or show you in the ways you'd like. We do feel emotions. Personally, I'm like a sponge. I feel so much emotion around me that it overwhelms me and I can't concentrate. Its the reason why I can't tolerate the silent treatment or other things like that. Emotions must be put to words somehow.

So yesterday at my primary care doctors office, I told him that whole story from beginning to end. I didn't cry, but I didn't pretend happiness either. My doctor told me I needed to fire the other people, so he could assume care for my psychological medication again. He said I was, "just oozing" as he called it, with ADHD symptoms.
"Why were you not checked to see if you have it?"  I don't have an answer. He asked about my childhood, and then handed me a rating scale. He said I can take it in 2 weeks when I have my return appointment, so he can have it on file formally.

However he said, "I don't need to see it to know. Its pretty obvious just by what you're describing. I think I can help you. In fact, I know I can." 

And that brings me to today. Someone finally listened! I know that technically one can't be diagnosed with both Autism and ADHD, however its becoming more the "norm" to put it on paper that way because them it helps people, especially parents, to remember that ADHD symptoms are present in Autism and that they too are a part of the big picture.


Maybe I'll try medication. Maybe I won't. I'm not sure yet. I know there is the issue of it causing aggression or other things, because I'm autistic. It'll have to be something we take one day at a time. For now, I'm truly happy that someone is listening for once. Someone else knows that I'm not happy with what I've accomplished in life, and that I want more from it. This could be a turning point for me. This could be the moment of real hope.

Well, two days has now turned into three so I should probably post this extremely long and boring blog post. Thanks for reading and if you're new to my website, get comfortable! Its always a bumpy ride around here!

My Struggles With Blogging and Anonymity

I've struggled with the idea of separating my blog for awhile now. Part of me wants to keep it semi-private, while the other part of me want to announce it and shout it from the rooftops. Its that open and closed part of myself that annoys me the most. Generally speaking, I am a private person. I keep my shades closed and I hate the sound of someone knocking on my door. Online however it feels different to me. I know for many people on the spectrum, the internet provides that anonymity that they crave. The problem is, I realize its false. I am not a secret. In a matter of clicks you can connect other profiles to other sites, and bam! My identity is pretty obvious and I'm easy to find. I can be found on thousands of websites in one Google search. I've had an online presence since 1996 and I can't just wipe that away. I don't even want to! But sometimes I struggle with blogging about things that feel private. Maybe its because I creep on my neighbors online. (and everyone else I know.) Maybe its because I can't get over how open other people really are. Or maybe it's simply that people don't give a shit?

I see you..

Do you know how easy you are to Google? Do you realize that I know everything about you? I've told people that I looked them up before. And I was shocked. Flabbergasted really! To hear them nonchalantly say, "Oh ya?" And that was that. Oh ya?! Seriously? I just told you that I stalked you online. I know where your work, your home address, your phone number, and I know that you hate  your mother in law and you had sex last night with an ex boyfriend that's the most hideous creature ever born on earth, but that you're desperate and horny so that doesn't matter. I know that you can't pay your rent, but that you bought a new car. Oops. Never mind. The new boy toy bought you a new car, you just sleep with him to keep him making payments. And the day I found out you had a freckle on your inner thigh right next to your va-jayjay was the day I realized I knew too much. My cup of coffee every morning, and a click to see your latest post.

But back to my issue. I told you that I stalk you and you don't care. Now I'm left wondering if I'm in the minority. And how can I feel two opposing things at once? I want a blog. I want traffic and visitors, and even yearn to reach out to people, especially other mothers that have a disability or are struggling with a mental or neurological disorder. And yet I'm extremely private and, yes.. I'll say it.. paranoid. I think you're a social worker hired by DHS to spy on me and report back how many diapers I didn't change immediately after the baby peed in them, and how many dinners are cereal because I'm too frazzled to cook dinner. Or maybe you're just a family member. ... except I don't have many of those I talk to. Wait, that's worse. Maybe you're one of the ones I don't talk to! I keep you out of my life because I don't want you in it. But here you are, reading my every thought I put here. And short of making my blog completely private, there isn't anything I can do about it. (though I suppose if I was willing to move my blog elsewhere I could utilize IP blocking but that's besides the point.)

So just exactly why do I blog again? I seem to be nothing but a contradiction in every sentence. I confuse even myself. I learned years ago to write down things that confuse me, so here it goes.

I am blogging for several reasons. I will list my reasons. They are in no particular order of importance.

1. I want to preserve memories and thoughts about my life and my family's, as well as save pictures and videos.
   
2. I want to write down my struggles and successes as a parent with a disability. 
3. I want readers to be able to connect with me. As strange as this sounds after reading the above paragraphs, I want readers to get to know me in a way that most people don't. I want them to be able to relate in some way and share my journey through life.
4. I want people, women, and parents to be able to find information about Autism, ADHD, Anxiety Disorder and other various issues that I have first hand knowledge about. I want to be a source of information and also entertainment. Because lets face it, my life is chaotic and crazy! 
5. I want to be more consistent in my delivery of this content so that my readers will always have something to keep them entertained. 
6. I want to find comfort and healing through this blog, by knowing that everything in it might be public knowledge. I want to eventually feel okay about this. So in part, I consider this an important part of my personal therapy. 
7. I would like to make millions of dollars in revenue by delivering highly entertaining content.  
8. I want to enjoy myself while writing and have a place that I can feel free to share what I create.
9. I want to be able to share my graphic designs, photographs, poetry and stories with a larger audience beyond my husband and kids. 
10. I want to accomplish something bigger than myself.

So why have I written this today? Well, I realized that its taking a lot of energy to try to separate what I want to write about my life in general (like a journal) and what I want to educate people on. (autism, ADHD, etc) The two really are intertwined. I cannot take the autism out of my life, any more than I can take away my natural eye color. I can mask it but its always really there in my DNA. So I decided against separating my journal type blog, from my autism blog. Who am I? I'm a mother, and a wife. I'm a woman with autism, and anxiety disorder. I'm a mother to several special needs children and I have a husband with ADHD. I'm Pagan, but struggle with integrating that into my life on a daily basis now that I have children, and find myself hating that in order to be understood I have to box myself into the category of Wicca. I'm an ex Christian, abused by their dogma and brought down by the holier than thou believers. I believe in co-existing with other religions. Christianity I've found for the most part, does not. I'm a survivor of childhood sexual abuse and emotional, mental and physical abuse in my teen years and adult life. I'm an recovering self mutilator (cutter) and quit smoking cold turkey 4 years ago. I've been incorrectly diagnosed with quite a few things, and finally after years.. correctly diagnosed. I spent years on medication that I didn't need to take.

There are so many different things that make me who I am. Its not possible to fit them all in this paragraph, or separate them into different blogs to target different audiences, even though that's what gets the best traffic. (most websites tell me anyway) What matters is that you all know I'm about as diverse as it comes. Marching to the beat of my own drummer, is the best sentence I could use to describe me. And best yet? No one else even hears the beat I'm marching too. (and they're all marching the other way lol)

Please know, if you read old posts you might find that I tried to use various pseudonyms to conceal my identity, or my children. The problem is, I find that extremely impersonal. (which I should like right?.. wrong.) I have this need to connect with readers, and that connection can only be done when I'm telling the truth. No matter how awful it might be. Anyone that truly knows me in real life knows that I value truth over anything else. Even if it hurts. So I think I have this real need to convey that to my readers. No matter what parts of my life need improvement. No matter the mistakes I've made. No matter how imperfect I may be, I am always going to be honest. Without honesty, what do we have?

Though my life might be entertaining to read, and my issues I deal with every day.. well, I don't often hear stories quite like mine. Other times my posts can be depressing. Sometimes they might make you angry. Maybe you feel pity. Maybe you hate me. Maybe you love me. At the end of the day, I know I wrote the truth and hopefully so do you. Its that connection that I'm really reaching for.

So please, when you read my blog; try to remember that I'm writing it for many purposes. If you know me in real life, (online friends don't count here, sorry!) please do us both a favor and don't tell me you're reading my blog. Stalk me if you'd like, but lets keep it a secret. If I've written something about you and haven't concealed your identity, then by all means let me know and I'll rectify that immediately. (and then I'll pretend that you never told me you found my blog) Sometimes when I'm writing (with honesty) I don't remember to leave out those details. Because to me, the details are whats important. But rest assured I never put full names and addresses or anything crazy like that. For some reason I just have a real hard time changing peoples first names. Its almost like I cannot tell the story with fake names or it changes everything for me. I spent so much time trying to remember who is who, and what name I need to use for what person that the whole thing I was trying to write is lost and the moment, gone.

In a perfect world, no one that I know will ever find this blog and I can remain a wonderful mystery person. I'll have a million followers and become insanely popular. (and make those millions) I would be happy with a handful of loyal readers, and people that honestly can connect with what I'm writing and know that what they read is real. This is me. This is my life. Enjoy the ride.