The Death Of Me

Asperger’s is going to be the death of me

Is it going to kill me?

Am I going to kill it?

Is the world about to end

or am I?

Are both sides even?

Did I wash my hands

after touching the trashcan?

One

Two

Three

Four

Five

Six

Seven

Eight

Repeat

Did I step on that crack?

Will it really break my mother’s back?

I read about cancer

I must have it, right?

The symptom checker is my best friend

But also my worst

My head runs all day

Every day

All night

Every night

With problematic thoughts

And how to make myself feel better

I’m not sure it will work

To calm this down

But I try

Oh, how I try

And I’ll keep trying

Until I’m fine

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A “Typical” Day In My Life With Asperger’s

Asperger’s is anything but typical, but it also doesn’t define a person. Our lives are different, so therefore, our days are different. Here is a ride through a Sunday in my life as someone with Asperger’s:

8:45 AM– I wake up, ready for a good day. Then I remember I have to go out somewhere. Church usually, and then lunch with my family. A normal schedule, and I am used to it, so all is good.

10:00ish AM– The choir comes out, sometimes a few minutes late. Those few minutes deeply matter to me, and I am anxious until they finally come in

10:15ish AM– I start to get distracted. My mind goes off into it’s own world until I pop back into reality. Then I sing and read along with the service

11:00ish AM– Church is over. I dread the gaggle of people who are going to talk to me and touch me. I don’t know when I am supposed to hug them or shake their hand. I just know that I don’t want to be touched. I try to keep up the conversation with people, but let’s face it. All I can say is “Yes” and “Thankful”, no matter how well I know the person.

11:30 AM– We are out to eat with my grandparents, either at Cracker Barrel or a sandwich place. I am anxious because of the loud noise and many different smells combining in my nose. I handle it most of the times, but sometimes I zone out.

12:15 PM– We are finished eating. I have food all of the table, my clothes, and my face. I’m messier than my 11 year old sister. I’m probably messier than a six year old child. My mom promises to stain treat my clothes when we get home.

12:30 PM– We are in the car, either heading home or to a store. I like both, but some stores are very stimulating. I prepare myself and often do very well in the store.

2:00 PM– I am at home, either working on a project (such as writing or Legos) and am very immersed in my task. Well, most of the time. Sometimes I keep getting distracted, but if I’m really interested in it, I can pass by 4 hours without realizing it.

5:30 PM– My mother calls us for dinner. Another mean, another mess.

7:30 PM– Back on with my projects, probably for another few hours

10:00 PM– I wait until the clock says 10 and start to get ready for bed. This hasn’t happened recently due to insomnia. I take my blood pressure, even though I know I’m going to take my medicine even if my pressure is too low. Then I take my medicine. I kiss my mom and dad. I make sure “I love you” is the last thing they hear each night, and if it isn’t, I worry that I will die and that won’t be the last thing they hear from me.

Goodnight.

Wait a minute…this schedule is all very true, but my day is very typical to people without Asperger’s  as well. Here is another version of a Sunday in my life as a person with Asperger’s

8:45 AM– I wake up, ready for a new day. I know there are several things happening today, and prepare myself for them.

10:00ish AM– I wait in church, a little anxious, but anticipating what should be a good church service. My pastor is great.

10:15ish AM– I start to zone out, but I bring myself back. Everybody zones out once in awhile. Sure, I might do it more, but it doesn’t make me strange.

11:00ish AM– Church is over. I am anxious about talking to people, but I am excited to shake my pastor’s hand and have him praise me on my blog, or something else I’ve done recently.

11:30 AM– We go out to eat. It is loud, bright, and odorous, but I take in my food and enjoy every bite. I focus on the details and fully appreciate my meal.

12:15 AM– I am messy, so I clean off the table and my face. I try to leave the table as neat as I can. My clothes are messy, but they will be cleaned when we get home.

12:30 PM– We either head home or to a store. If we go to a store, I use my sensitivities to my advantage and try to look at each item intently and pick out the best ones I can.

2:00 PM– I get involved in a project or activity that I enjoy. I do it because it is fun, and it makes me happy. Simple as that.

5:30 PM– Mom calls us to dinner. I make another mess, but clean it up.  Dinner is delicious (as always). I clean up my plate but often leave the cup behind.

7:30 PM-Back to the projects!

10:00 PM– I go through my schedule, on a regular night. I kiss my parents and tell them I love them. I go to sleep happy and ready for another new day.

Goodnight
See! An Asperger’s day can be hard, but worded differently, but still in a completely true way, it can be similar to an “average” person’s. We are different. That is a fact. However, we are also very similar to an “average” person. In fact, there is no average person with Asperger’s, but there is also no average person. Our days are different, but aren’t we all?

Asperger’s and Attention

I’ve always had a hard time paying attention. This is strange, because I was an A student during my high school years, and was an average student in the semester I was in college. Just because I was a good student doesn’t mean I didn’t have attention issues.

I was looking up something on the internet. Specifically, I was researching what a trumpet player was called because of a family discussion. When I got to the search engine, I typed in “what is a” and then saw several jokes and drifted off into a joke website. I laughed to myself for a while. My mother then asked a little later if I had looked the trumpet question up. I sheepishly answered no. She then asked me if I had gotten distracted, which I answered yes.

By the way, a trumpet player is called a trumpeter.

While I got good grades, I was extremely easily distracted. One of my teacher had band posters on his wall, and I would start thinking about the songs by the band. Then I’d start thinking about other bands and start singing songs in my head. If I heard a person walking down the hallway, I’d start wondering where they were going.

I also zone out a lot. This happened in most of my classes, but I was often able to fill out the blanks when this happened by looking in my text book. Textbooks were my best friend. My mom also helped me in math a lot, as she teaches it. When I was in math classes, the teacher did not have time to break things down for me. I would go home and have my mom explain the math and break it down into steps that made more sense to me. I ended up with A’s in math classes because of her.

I also took longer on tests when I took them. Whispering, pencils dropping, and just simple daydreaming took my mind away from the questions. Luckily, with an IEP in high school and disability services, I was able to go elsewhere to test. In high school, I went to a special education room to test, and in college I either went to a quiet classroom or disability services. It helped me finish much faster because the attention issues eased up a little.

It’s not only in school. I just asked my mom what distracted me. She answered in less than a second “Everything”. I guess that pretty much sums up my experience.

I was wondering why I had this struggle. I had some tests done awhile back, and was told that I didn’t have ADD or ADHD. However, I was also diagnosed with Asperger’s at the same time as the tests. I decided to look up if Asperger’s caused poor concentration. The answer is YES. Many people with Asperger’s have severe concentration issues. This helped explain it to me. I have had the concentration issues my whole life, but I didn’t realize it had Asperger’s until several months ago.

Now that I am out of school, distractions still keep me from being fully present. I will be in my own world while someone asks me a question. A person might come up to me and say hello and my parents will have to get my attention so I greet them back.  I also will be talking, but then see something and comment on it. I then forget what I was talking about,

It sucks to be inside of my head most of the time. I was on medicine to help with these issues, but due to worsening mania, my psychiatrist took me off of it. I miss it and being able to see and hear the world clearly. It helped me block out random thoughts. Hopefully I can work on having that happen without medication.

Asperger’s has it’s bad side. People tell me I am smart, but not being able to be fully present stops that from showing sometimes.

It is hard but- *starts singing along with the radio*- wait what was I saying?
Oh yeah, It is hard, but I’m working on it, and yes, the singing thing happens more often than you think.

She Will Be Missed

Note: This was written yesterday, July 21, 2016

Sad isn’t a strong enough word for how I am feeling right now. This isn’t because of my bipolar or depression. This is because one of my favorite people in my life passed away this afternoon. I can’t wrap my head around it. She has been special to me since I was a little girl.

The woman I am talking about is a lady from our church who has Down Syndrome. She never let it get in the way of communicating with us in her own special way. Even though she couldn’t talk, she would smile, laugh, or shake her head as if embarrassed. We might have not been able to hear her speak, but we all knew what she was thinking. She would sit in church and use her bulletin to write “I Love You” notes and hand them out to the people around her. I’m sure I still have a few of them in my bedroom. I probably have a few of her Christmas cards as well.

I also miss her fist bumps. She would come up to you and put out a fist, and you couldn’t help but smile and bump your knuckles against hers. I know we also put a smile on her face. I remember making funny faces at her before church started and making her let out the most full-hearted laugh you could imagine.

She would normally sit two pews in front of us at church with another couple. Her parents sat behind her. Her mother is the nicest person you could ever meet. She is such a strong woman, battling with her own health issues, while helping her daughter with her’s. Her father was also an amazing man. They took her into their home when she was only three days old and gave her the best life she could have ever wanted. They made sure she had everything she needed and much of what she wanted. They are loving, and my family is very close to theirs. Her mother is like another grandmother to me. They are all my heroes, and I love them all very very much.

My grandparents took me and my sister to visit her a while back when she was in the hospital. She was feeling a bit better at that point, and was able to recognize us. She grabbed my hand and kissed it, and kept holding on. My sister and I each brought her a stuffed animal, and my grandparents brought her a hat. We put the hat on her, and put the stuffed animals on either side of her. My sister and I each got on opposite sides of her and took a picture. She was grasping my hand the whole time. I left with tears in my eyes, both full of happiness that she was feeling a little better, and sadness about how I knew she would go back down soon. It was the last time I saw her.

I was talking to my grandparents the other day. They were telling me about how my special lady was in a nursing home and an aide came in. She got really excited and trying to hug her. Her mother heard about it and went in to see the aide. Apparently the aide’s facial features and glasses were exactly like mine. I’d like to believe that this means she remembered who I was even at that time in her life. Even if that is not true, I know I will always remember her.

She had been taken to the ER the other day and was diagnosed with pneumonia. They knew that it was only a matter of days until she left us to go above.

I talked to my mother this morning about how much the woman meant to me. I also stated that this would be my first loss of someone I knew well and kept close to my heart if she did leave soon. My grandparents visited her this morning, and said that I could go with them the next time they went, but probably didn’t want to. They told me that she wouldn’t remember me and was not in good shape. They said it was really sad, and didn’t want to risk my shaky mental state by seeing her.

Then, I went in with my grandmother to get my toenails done. When I was almost done, my grandfather walked in and whispered something to my grandmother. She then looked at me for a few seconds while I asked what was wrong.

She was gone. She is gone. I almost lost it but calmed myself down until it was just a few tears rolling down my face. It’s been a rough day for me. I can’t imagine how my grandparents feel. I can in no way imagine how her loving parents are feeling. I can’t wait until I see them so I can wrap her mother up in a big hug.

I went shopping tonight and bought a new dress and shoes, all black. I didn’t expect that my next clothing purchase would be for such a sad event. Her funeral will be Monday and I am going to be there with my church family. We will help each other during such a sad, but meaningful event. She will be remembered with love and happiness.

I can’t wait until I get my hands on that picture of us in the hospital. I’ll hold on to it, as I already hold the memory in my head.

I can’t wait until I see you again, my lovely friend. I hope you are waiting at heaven’s gate, with a smile, a healthy body, and a fist bump to welcome me in.

NVLD v. Asperger’s v. Autism Level 2

I am diagnosed with what used to be called Asperger’s Syndrome. With the release of the DSM-5, all autistic disorders are under the umbrella term Autistic Spectrum Disorder. This means that Asperger’s, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS),  and Disintegrative Disorder are no longer used to diagnose people. There is now a severity level system, with levels 1-3

 

Check out this site, for a better explanation on the level system than I could ever give

http://www.myaspergerschild.com/2013/09/the-dsm-5-severity-levels-of-autism.html

 

I am considered to have Autism Level 2, which is considered to require substantial support. I have low levels of social skills and repetitive behaviors obvious to outsiders. I’d say it’s a little more severe than Asperger’s, which most say is level 1. I was also told that once my mental illnesses are under control, I could move down to a level 1.

 

The description for level 2 fits me well as my parents and myself believe. I guess the person who tested me was correct.

 

There is one thing that sticks with me from the meeting my parents and I had with the testing psychologist. She said that at first, she thought I might have a nonverbal learning disability, or NVLD. She said she decided that I didn’t have that, because I was good at math. I had every other symptom of the disorder, but my math skills were better than is found in NVLD. That disorder is like a milder Asperger’s. A person with the disorder often has a hard time with body language, is clumsy, and difficulty with motor skills. To see all of the symptoms, visit

http://ldaamerica.org/types-of-learning-disabilities/non-verbal-learning-disabilities/

 

I took the GADS, or Gilliam Asperger’s Disorder Scale, which asks about social skills, sensory behaviors, body and object use, among under sections to give a number of severity, between 0-3, with 3 being the most severe. I peeked at my parent’s answers, and was surprised. I expected their answers to give a lower score than I would on the form. When I looked at their answers, they showed a much higher final score. My score got me an Autism Level 1, while my parents answers got around an Autism Level 2 or 2 ½  for me. I turned them into the psychologist testing me, along with tests for ADHD and anxiety/depression. She gave me an IQ test. One of the tests was called the Kohs block test, where I had to make the design with blocks that had different designs on them. I was terrible at it. I skipped many of them, because I couldn’t figure them out, and I eventually told the person administering the test that I couldn’t do it any more. She timed me on each one and wrote it in her book about me. Then she gave me tests where I had to tell her what different figurative language phrases meant. I was even worse at this. She often asked me to go further in my explanation, which I could not do. Math problems were the easiest part for me. All I had to do was answer single digit addition, subtraction, and multiplication problems until the timer ran out. There were other tests that I do not remember as well.

 

The final session occurred the day after we got back from Disney World. This time, my parents came in with me. The psychologist started to tell us the results. She told me that I did not ADHD, but I definitely had and ASD, in which both disorders can cause inattention. I have an extremely hard time focusing on anything for too long. I had low verbal comprehension, perceptual skills, and processing speed. I did have high working memory skills. All of these results lead to Asperger’s or autism level 2 in my case. She also told me that I had bipolar 1 disorder instead of borderline personality disorder, but that story is for another time.

 

Basically, the level of severity of the three disorders are NVLD, then Asperger’s (although it is technically not a disorder now),and then Autism Level 2. The DSM changes things all of the time, and people are very upset that Asperger’s, Disintegrative Disorder and PDD-NOS are no longer their own disorders on the autism spectrum, and are now all labeled as Autism Spectrum Disorder or ASD, with  the levels. This means that previously diagnosed kids had to retest because of the different criteria.

 

Testing for ASD is not fun, but it does teach you more about yourself. Whether you have NVLD or a level of autism, it helps you find resources to help you. My parent’s had wondered if I had Asperger’s for a while. The therapist and psychiatrist at one of my recent hospitalization suggested I get tested. My psychiatrist on the outside agreed and helped us find a good testing psychologist. The knowledge of your disorder can help, even if you didn’t realize that you had the symptoms at all. If your child has any symptoms, and is having a rough time, whether it be a NVLD or are any level of autism. , it could be helpful to look into an IEP for school, and if needed occupational and speech therapy.

 

Finding resources for any of the disorders is harder as an adult, as I know. There are less social skills groups or therapists for adults. I have no options near me that don’t charge $400 for a small number of once a week social skills group and takes my family’s insurance.There are also no adult occupational therapists that could work with me. With more people getting diagnosed with any of the disorders as an adult, you would think there would be more options. We didn’t get help when we were younger because we were not diagnosed.

 

All of the disorders have similar symptoms, and can be hard to tell apart. Make sure that the person diagnosing you has a good reputation due to their former diagnoses of people.
Any developmental or learning disorder can be hard,  but they do not mean life is over. It might mean that you need extra help that no one thought of earlier, but getting that help can change your life in a positive way. I am now finding techniques to help myself, and I am getting other suggestions all the time. A diagnosis is not a dead end. It is the start of a wrong turn turning into an opportunity to find a better way to get to where you are going.

Stimming

People try to understand

What I have and Who I am

I’m not a burden even when I think

I have my flaws but also have strength

 

I might not be you but I do try

It might be invisible, but it is inside

My brain can’t block thoughts , they get in the way

My movements tell how I’m feeling each day

 

Put hands on my leg to stop my shaking

I’m still going to do it, you must be mistaking

Me for someone who can actually quit

I try to control but that’s just how I sit

 

Wringing, flapping, and rubbing my nails

My hands won’t stop, attempts all fail

They move when I’m nervous or at peace

Whether I’m walking or press computer keys

 

Whenever my body goes into shock

My body’s reaction is to just rock

Back and forth, side to side

For a minute, I  feel alright

 

Gazing at nothing except the air

I’m not watching you, I just have to stare

As people walk by they look at their friend

“Was she staring at me?” Like I couldn’t hear them

 

Repetition happens each day of my life

Songs and stories with words I could write

I know them so well, tell stories twice or three

Or singing one song, when I shouldn’t be

 

Touching my lips makes me feel release

Even when they say to stop, I can’t stop me

Smooth and comforting, when I’m need it most

Helps me feel better, or at least close

 

My stimming might be a part of me

That I will have for eternity

I’ll try to get through like I always do

But never, never will I be like you

 

I am not my Asperger’s It’s not who I am

Just because I’m different, I will still stand

It doesn’t mean I am weird, but I am unique

I just have some symptoms that make me, me

How People React To My Asperger’s

When I tell people I have Asperger’s they have can have one or both of two option. The Sorry Bunch and The Patronizing Fools.

The Sorry “we have to deal with you”  Bunch is not too awful.For example, when I had just been diagnosed. I told a couple friends about it. They both sort of looked at me, shook their heads, and quietly said they were sorry.. If I ever brought it up, the room would go silent. I was in college at the time, and lived on campus. On the weekends, I would go home where I was free to talk about it.

I’m guessing my friends didn’t know anything about autism. I probably thought they should know just because I do. Even before I was diagnosed, I read, watched videos, and wrote all of my papers about it or at least mentioned it in my senior year. Even a paper about cells, which I wrote about the scientific side of  Autism. My teacher wrote on the paper that I had gone completely off what I was supposed to do. He must have liked it though because I got what I believe was a 93%

While my  friends didn’t know what the symptoms were, I was still displaying them. I didn’t enjoy hanging out with a lot of people, I never participated in any small-talk nonsense. No eye contact, a few obsessions that often took over my life,causing many one sided conversations. There were also one sided where someone talked and all I could think about was what I wanted to say. If you can name it, I probably do it.

Then there are the Patronizing  “poor baby” Fools. The ones who treat you like a child, and try to make themselves the center of attention. Most of these people are from when I was in my last hospital. There was a woman on the less seriously ill side. I must have said that I had  Asperger’s, and I guess she heard me. She then asked me about my symptoms, which I explained to her, She then went on to tell Every. Single. Patient. About my disorder and what they should and shouldn’t do to help me. I told her that I was fine. That I hadn’t had a meltdown since I was on the more serious side, and before that hadn’t had one like that for a long time. She still insisted that I needed help, and told the staff the lights were too bright, the TV volume was too loud, and people needed to take extra care of me.

NO NO NO! I don’t want all of this. I know what to do when it happens and I hate feeling like a child, even  when I act like one. I don’t need someone answering for me. When she said she was going to explain my illness during group therapy. I kindly told her not too. If I wanted to whole group to know, I would have told them myself, no matter how hard it was, if I needed their help or advice. Advice would have made me mad, unless it is from another person with Asperger’s. If you  are not on the spectrum, you don’t know how it affects me,

That woman stayed by my side, talking to me like I was an idiot. One thing I know I am not is an idiot. There are times I think I am though.

For example, when someone tells a joke or is messing with me I get confused. I apparently take it too literally. I take the jokes too hard until someone tells me they were joking with me. It takes me a bit of brainpower to figure them out, so I normally don’t get it and laugh for at least 30 seconds.  There have been jokes that took me days to figure out and laugh out loud even though no one knows why. I also try to tell jokes, but they normally don’t make sense to anyone but me. My dad still laughs at them, because he tells awful jokes that are 1.)  mostly understandable and 2.) horrible but hilarious, I can even use sarcasm. I hate people who try to use it to bother me. If you are intentionally trying to trick me just because you know I’ll believe, that hurts.

You know what hurts even more? Feeling left out all the time. I wanted friends, but at the same time I wish I didn’t. I had people who would do stuff together without me. Part of me was glad they didn’t invite me.. The other part desperately wanted friends. i tried to act like everybody else so I could fit in. I take on words they say, activities they do, and their habits. I am not me. I am somebody else, except for my disorders they don’t have.

I can say with certainty that I am strange, but all if it isn’t my Asperger’s. Part of it s just me. Sometimes I wish my Asperger’s, but it is part of who I am, just like I am a blogger,or a high school graduate after many tough years. I did this with the part of my mind that is Asperger’s. While my blog is called Beautifully Bipolar, I am also Amazingly Autistic.

We’re Taking Over- Bea Miller