Tag Archives: asd

I was a selective mute

When I was 3 years old, I stopped talking.  I was progressing normally until then and I progressed in every other way imaginable after, but when it came to speaking to people who were not my parents or siblings, I just couldn’t do it.  My mom wasn’t even aware that I had stopped talking because I still spoke to her.  It wasn’t until my family visited my grandparents in Florida that my grandma mentioned that I wasn’t speaking.

I was selectively mute.  The diagnosis was previously called elective mutism, but it was changed to reflect that those with this disorder do not choose to not speak.  They just can’t.  I remember many times as a kid when I was pressured to speak and most of those times I desperately wanted to say something just to end the relentless interrogation, but it was like an invisible force was around my neck, preventing me from saying anything.  I once described the feeling like a cartoon garden hose with a kink and the water pressure builds until the hose explodes; the words would clog my throat and I’d fight to simultaneously keep them down and hope that they break free.  I wanted to speak but over the years my silence became comfortable and I couldn’t figure out a way to start talking without causing huge reactions from my peers, those of which asked me nearly every recess why I didn’t talk.  How was I to go from being “The Girl Who Doesn’t Talk” to being a kid who does?

Following third grade the school district boundaries changed, so I, and many other students, was moved to a new school.  This redistricting would end up changing my life.  At my new school I had the chance to start over and be the kid who does talk and most of the students would have no idea that it was something I struggled with, but the fear of revealing my voice was still overpowering.  My fourth grade teacher pulled me aside a few days into the new school year and requested that I start communicating with her but through a notebook.  I was reluctant to start and fought it as much as I could.  The idea of changing, even as little as using a notebook to communicate, seemed more daunting than speaking.  Later on I was introduced to the school’s psychologist, Ms. Manning.  She had a plan and was willing to do anything to get me to where I needed to be.

One of the projects the fourth graders were tasked to do was to create a children’s book that we would write and illustrate ourselves.  Having been a budding writer from my experiences of writing stories in class at my last school, this project was something very special to me.  Ms. Manning discussed making my big goal, to be accomplished at the end of the year, as reading my story to my sister’s second grade class.  The reward for completing this feat was to be a pet bird, which my parents had agreed upon.

Throughout the year Ms. Manning gained my trust and I started speaking with her. Using the same methods she helped me feel comfortable around other people, like my teacher and a few classmates.  By the end of the school year I had finally started speaking in class, but I still had to complete my final goal of reading my story.

The day came and all I remember is being up at the front of the class.  I don’t remember the walk to the classroom or how I ended up in a chair with a bunch of seven year olds crowded around me, but I do remember the gut-wrenching fear.  I was scared out of my mind, but I was also a courageous and ambitious little girl, so even though I did not want to read, I did it anyway.  I spoke to those younger kids, telling them the story of a girl who befriended a talking carrot as they go off into the city and solve crimes.  The story itself did not make much sense, but ideas from kids rarely ever do.

Closing the book to mark the end of my tale, I felt a huge wave of relief as the gurgling in my stomach settled.  I smiled hesitantly, like I had just outrun a cheetah and the realization that I was still alive hadn’t sunk in yet.  The second graders clapped for me, all but one unaware of how monumental this day was.  I looked to my sister and then to my mom and Ms. Manning standing in the classroom doorway; if I could speak, I could do anything.

Just some musings.

It’s unfortunate when told to live everyday like it’s your last, the only thing you can see yourself doing on your last day of life is staying in bed.  Is my belief that I am doing better really true?  If I were to die tomorrow, why would I not be gathering all of my loved ones and having a giant party?  What is it that makes me believe that if my death was imminent that no one would be there?  If I knew that tomorrow, my Willow was going to die, I would spend every waking moment I could with her; holding her, snuggling her, breathing in her scent as her long fur catches in my nose.  I would want her to know that my life was infinitely better because I had her.  Why does the possibility of my death mean less to me than my cat’s?  I’m sure that if I were to die tomorrow, that my loved ones would want to see me and say goodbye, yet some part of me thinks that my request to be around them would be met with contempt.  I don’t know where this comes from.  Is it from a lack of confidence or low self-esteem or is more that I have no self-worth?  Am I worthy in my own eyes?

Comparison to Three Months Ago

I decided to look over some of my earlier posts from before my time in IOP. I wasn’t completely aware how much different I felt until I read over those entries.  Here are some quotes from my October posts:

I don’t plan on doing anything drastic, but it just feels like this emptiness I have been experiencing is just going to engulf me.  It’s like I am standing on the shoreline and a giant wave is just going to drown me and my lifeless body will be swept to sea.  It feels like I have no control over this.  I feel like someone is going to find me dead, not by my own hands, but by some unforeseen force, like I spontaneously combusted with despair … I imagine my spirit as this decrepit soul, weighed down by chains, carrying a boulder the size of a small car and dripping wet from being doused with ice cold water.  It is seeking solace, warmth, relief, but all it does is get colder, wetter, heavier, weaker.  How do you come back from that?

The world is pressing down on me and I am not fighting back.  I’m letting it crush me, asphyxiate me slowly.  The light inside of me is no longer the sun always shining, it is a candle constantly being blown out … How do I start caring when the thought of doing so crushes me into immobility?  I can’t face living.  I don’t want to die though.  I’m not only at the end of my rope, it is fraying quickly under my weight, under everything I am going through, everything I am feeling.

I feel, dare I say it, hopeful now. I feel like I have purpose and I can do the things I want to do and succeed at them.  I don’t constantly feel like I am putting up roadblocks from my goals.  I know I still sometimes do that, but I don’t feel like they are impenetrable like they once were.  While my sleep schedule and issues are still wonky and need to be worked on, I feel I can fix that if I push myself to change.

I still do not have a job, but I am actively looking.  While I do not want to take just any shitty job out there, it’s becoming more and more likely that that is just what I have to do for now.  I do not want that at all, but apparently being a grown up means doing things you don’t want to do to better yourself.  I once was capable of doing such things, but haven’t in several years.  Maybe it’s time to start.

Facial Cues

It is common among autistics that they have trouble deciphering peoples’ facial expressions and cues.  I believe that if it hadn’t been for my love of TV shows, I would be a lot worse off at reading people.  I have a very hard time meeting people’s eyes and always have, which is a classic autism symptom.  Because of this, I don’t really look at people so I can’t interpret what they are feeling from their face.  When I watch shows like Castle and Who’s The Boss? though, I am able to look at the characters’ faces because I am not in their realm so I don’t feel anxious about doing it.  I think I learned how to read people because of TV.  I can decipher subtle changes in characters which I don’t think I would have been able to do about 15 years ago.  So TV has been very beneficial in my life.

IOP Update

My last day at the IOP program I have been going to is December 8th.  I feel really good about having done this program.  I feel better about life because I have a reason to get up in the morning and I have actually been going everyday.  One of the reasons I never could hold down a job was because I never actually went.  I believe the reason I did that was because I told myself I was unreliable and I believed that I could not change that.  I believed that that was who I had become and I couldn’t do anything about it.  This group has taught me that I can be reliable and I have it in me to do what is expected of me.  I feel a little more confident in myself.  As much as I want to get back to the super driven person I was in high school, I just have to accept that I can’t do that at the moment.  I might someday get there, but I can’t expect myself to jump right back into that life.

I have been doing pretty well about not isolating myself in my bedroom lately either.  When I get home from group I will go in the living room and read or go online for awhile.  Before I would just spend the entire day in my bedroom and wouldn’t see anyone.  I did isolate myself today because I just wasn’t feeling like being in the living room this afternoon, so I spent time with Willie in my room, which she was happy about.

I’ve noticed that I have been having memory or recall issues lately.  I don’t know if it is my meds or something else though.  It feels like if my brain is a maze and the destination for what I want to know is just right there, my brain takes the super long route around and through the maze to get to the answer when it was just a few simple steps ahead.

I have been working with a nonprofit here that helps people with autism find jobs, so I am hoping I will have a job pretty soon.

I’m Still Here

I saw my psychiatrist on October 3rd.  I managed to survive those two days.  My shrink essentially told me to take a few weeks off work and get off the night shift because the overnight hours seem to have been worsening my depression.  I ended up just quitting my job because there simply isn’t a job there that isn’t overnights.  So yet again, I am unemployed.  I applied for disability, so we will see if anything comes from that.

As much as I hate to say it, life has gotten a lot better since quitting.  I don’t have any money and I am basically dependent on my parents, but I feel like I am free from that anxiety.  I hope to someday soon be able to get back into the workforce but at the moment it isn’t something I am actively pursuing.  I have found myself laughing a lot more than I was the last two months.  I feel such immense joy when I watch Castle.  I missed that.

My shrink recommended me for a couple of partial programs.  I went to an intake appointment last Friday, but they didn’t think their program was the right fit for me, so they referred me to three other places.  I made an appointment with one of them in Chanhassen for next Tuesday.  I want to get started on all of this.  I want to change my life.

The Aftermath of my ER Visit

I went to the ER today.  Life has basically been kicking my ass and I don’t know how to fix it.  While I haven’t been very suicidal lately, I have had thoughts that my only way out of this emptiness is death.  I don’t want to die, but I feel like I don’t have any other options.  This terrifies me.  How do I change?  How do I even make the steps to change?  I don’t need to make a complete 180, I need to make a 540.

I feel so overwhelmed.  I can’t see my psychiatrist until Friday, but I feel like I won’t be able to make it until then.  I don’t plan on doing anything drastic, but it just feels like this emptiness I have been experiencing is just going to engulf me.  It’s like I am standing on the shoreline and a giant wave is just going to drown me and my lifeless body will be swept to sea.  It feels like I have no control over this.  I feel like someone is going to find me dead, not by my own hands, but by some unforeseen force, like I spontaneously combusted with despair.

The ER counselor did not admit me to the psych ward, instead opting for me to talk to my psychiatrist about a partial-hospitalization program that I participated in last year.  I don’t know what to do.  The counselor was saying how I need to get my life back on track, but I don’t know how to do this.  How do change?  They don’t make how-to manuals on changing everything you have let yourself become.  I need someone to tell me what to do.  I need steps to take.  I can’t do this on my own because I just don’t care enough to make the steps.  I need for something to switch in my brain.

I want to erase every memory from the last ten years.  Nothing good has come in the last ten years.  I don’t want to remind myself of how horrible life has been.  I don’t want to remember all of the negative self talk I have experienced.  I want to go back to my high school self where the world hadn’t yet killed my spirit.  I imagine my spirit as this decrepit soul, weighed down by chains, carrying a boulder the size of a small car and dripping wet from being doused with ice cold water.  It is seeking solace, warmth, relief, but all it does is get colder, wetter, heavier, weaker.  How do you come back from that?