I Have Asperger's

When people ask me to do something and I make up an excuse not to do it, I'm not making up the excuse because I'm being lazy (most of the time).  I'm usually making up the excuse because I don't know how to explain that if I push myself to do any more at that moment, or to do what has been asked of me, I may end up in a meltdown.  It may be because I'm feeling overwhelmed, or because the job you have asked me to do effects me some way.  Maybe the sound of the job hurts my ears, or maybe it's visually overwhelming, or perhaps I'm not focusing well enough to accomplish the task in a reasonable amount of time.  There are so many factors that go in to my decision of doing something.  If I was able to, I would help out everyone all of the time.

Today is Mother's Day, which makes this idea even more difficult for me.  My Mom asked me if I wanted to help put down mulch in the yard.  My "excuse" was that I didn't have the right clothing for the job.  My Mom knew better.  She didn't know WHY I didn't want to do help, but she wasn't expecting me to agree to it.  I still don't know exactly why I couldn't help today.  Was I thinking about the insects that would be buzzing in my ears?  The feeling of the dirt or gritty gloves on my hands?  Not knowing exactly how long it would take?  All of these factor in.  But my Mom is amazing, and she knows it.  She realized that even though I couldn't help her with the yard, I DO still love her very much.

Madonna was on The Ellen DeGeneres Show one day.  She said something that I will never forget.  After Ellen asked her if she could relate to a quote about how no artist is pleased, ever, at any time, she answered with this:

"Yes, and I think that's true for anybody who really cares deeply about what they do.  Nothing's ever quite good enough.  And at a certain point, you just have to let it go."

This is when I personally realized what a "true passion" is.  It's something you care so deeply about, that no matter what you do, nothing is ever quite good enough.  While I'm still learning how to let some things go, I do feel that the passion is what drives people in life.  It keeps them going.  It gives them a reason to get up in the morning.  It makes them remember that their work will never be finished.  And at the end of the day, all you have to do is look back and see just ONE thing that you've done.  One step that you've made towards this impossible goal.  Feel the moment of pride, and then continue.

I have two passions in life.  One of them is caring for animals.  The other is advocacy.  Neither one will ever be finished, but each day I work towards my impossible goals.  One day, when I am no longer here, I hope for all animals to be cared for as they deserve.  I also hope that there will be autism awareness, acceptance, and understanding.  Tonight I sleep.  Tomorrow, it's back to work.

When I was old enough to ask my Mom if I could play with the scale, my Mom got rid of it.  She hasn't had one since.  I'm grateful for that. I didn't grow up thinking about my weight.  I grew up instead thinking about my health.  I'm not worried about how "fat" I look, but how unhealthy I may feel.  Am I eating enough protein?  Have I been exercising enough to keep myself happy?  Am I sleeping well?  Have I been drinking enough water lately?  Once in a while, I will look at myself, and I will think "I wonder if I'm fat."  But seconds later, I realize...I don't really know what "fat" is.  So I must look fine, and I need to focus on making sure I feel healthy.

Health, to me, will never be about losing weight.  I have never gone to a gym to work out.  I don't go on a diet to buy a swimsuit.  (That being said, they need to make swimsuits a bit bigger!)  If something doesn't fit, I don't wear it.  I assume that half of the clothes I wear shrink from being washed, not from me getting bigger.  I wear stretch jeans, and belts that tie.  I don't even remember what size I am half of the time. 

I don't know how much I weigh.  It fluctuates.  And I really don't care.  As long as my body feels good, that's all that matters. 

Thank you, Mom, for allowing me to grow up "weightless."

There once lived a family who had a beautiful dining table and four chairs to go with it.  Now, these chairs were covered in a decorative fabric that accented the family's home.  For a long while, the fabric was nice and soft (at least, Goldilocks thought so!)  Over the years, it grew worn and withered.  The mother decided to change the fabric. 

While the change in the fabric was pretty, it was also very rough on the skin.  Goldilocks was uncomfortable at first.  She felt it scratching and did not enjoy the change.  Eventually, she grew accustomed and felt that she could slide into the chairs. 

One day, Goldilocks moved out, and when she came back to visit her family, she found the chairs once again covered in a new fabric.  Thank goodness she didn't live there anymore!  It wasn't that they didn't look pretty.  But when she tried to sit down THIS time, the texture was so different once again.  She could no longer slide into the chair.  Again, the change was difficult. 

The moral of the story?  When Goldilocks finds the chair that is "just right", she's going to find it very difficult to change to a new one.

(Yes, I'm Goldilocks.)

People don't realize that when they ask me to "try new foods", they are asking me to do something awful.  It's as if they are asking me to eat dirt.  That's literally what it feels like to me.  First, there's a taste that I'm not used to.  My body instantly rejects it at first, unless it smells good to me.  Then, there's the texture.  Then, I have to swallow it.  Then I have to deal with a leftover taste and texture in my mouth.  It's SO uncomfortable, that I had a meltdown just thinking about it.  I don't like being a picky eater.  I wouldn't be a picky eater if my body gave me that choice.  Sometimes, I get lucky and I find something new that I really enjoy.  But it's SO rare.  So when people tell me "eat it or starve", I feel like they are telling me "I don't care".  And that hurts.  Yes, I know there are people in third-world countries who don't get to eat daily.  I would give them some of my own meals if I could.  But for me, I honestly feel that starving is just as bad as having to eat something my body doesn't like.

I can't stand it when people interrupt me.  Not only is it rude, but I have a hard enough time communicating already.  (I know it SEEMS like I communicate just fine, but what you DON'T see is the fact that, most of the time, I can't say the words that I want to.  I will end up saying something similar but not quite what I mean, and then it gets misinterpreted.  So then I just give up.)

Don't get me wrong, I'm guilty of doing this, too.  Trust me, after years of being reminded of my manners, I know I'm guilty!  I also know that I'm not the only one.

Most people say that college years are the best years of their lives. I never really went to college. So far, the first year living on my own has been the best year of my life. (Minus my dog passing away.) However, it's been a struggle. I'm worried that people don't think I am capable of living independently, and will pull in the reins. Without these people, I probably wouldn't BE living independently. Because of all of this, I'm TERRIFIED that this will be the first and last year of being so independent. I know I can do it eventually, but I also can tell that no one will be patient enough to wait for me to learn my own ways in the world.  Rome wasn't built in a day.

When I was younger, I was CONSTANTLY getting sick.  I had a cough, or an ear infection, or a sore throat, or SOMETHING.  While I have no hard evidence to prove WHY I was sick so often, I do have an idea that would easily be a plausible reason.  I feel that it was most likely caused by stress.

Back then, I had no clue what my limitations were.  Not only that, but OTHERS didn't realize that my limitations were less than that of the average person.  This is because Asperger's makes everyday functioning a bit more challenging.  I have a hard time with communication, social skills, and I'm constantly dealing with overstimulation.  So, while many people can handle work for the first three hours of their eight hour workday, I'm already feeling as though I've taken a standardized test.  I am aware that three hours of work is no easy task for anyone.  However, it IS more strenuous for me.

I'm sharing this blog by an amazing woman named Christine Miserandino.  She is otherwise known as "The Spoon Lady".  She explains the difficulties of having Lupus, and how it can effect her energy and ability to function everyday.  I know I don't have Lupus, but the same idea still applies. 

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I had a dream the other night.  I dreamed that I was finding my way through an area that seemed very familiar, yet still confusing. There was something else amazing about this place, though. Signs. Everywhere I looked I could see signs about autism awareness, acceptance, and understanding. There was a HUGE Autism event just down the street and everyone was going to it. No one was upset with me when I misunderstood something, and I felt accepted. My goal in life is to make this dream come true.

I'm finally figuring out how to ACT on these ideas.  I'm looking into places to visit and ask about advocating at.  I'm trying to broaden my transportation routes.  And I'm determined to DO something instead of sitting around and waiting for others to ask me.  I can't WAIT to get out there.

As the month of March comes to an end, many people in the Autism Community are getting excited about April.  Why?  Because April is officially recognized as Autism Awareness Month.  Even better, April 2nd is World Autism Awareness Day.  Many people are getting ready to spread awareness.  However, what exactly does awareness mean?

Does awareness mean changing light bulbs to the color blue?  Does it mean participating in a walk?  Does awareness mean telling your family for the first time that you are on the spectrum?  Maybe it just means donating time or money to your favorite cause.  Yet, do these ways actually spread awareness?

Dictionaries seem to define awareness as "having the knowledge of".  So how do we share this knowledge? 

In my personal opinion, the best way of spreading awareness would be the third action listed above.  "Telling people for the first time that you are on the spectrum".  Now those people are aware that you are on the autism spectrum.  Now, they are aware of autism.

There is a second question here, though.  Many people in the Autism Community are asking for MORE than awareness.  Quite a few people have said that awareness is not enough.  That acceptance is more important.  Yet, the way I see it, there cannot be acceptance without awareness first.  For, how can one accept something that they are not even aware of yet?

This is the reason why I ask for THREE different concepts when I advocate.  I try to spread the idea of awareness, acceptance, AND understanding.  So, when April comes around (although, there's no reason why we can't spread these concepts all year round...) please help me to advocate.

Advocating is very hard to do. You have to have enough confidence to believe in yourself and know what you are saying is the truth. You have to care enough to help others, but you have to love yourself enough to care about helping yourself, too. You have to have a strong enough way to communicate your ideas, and you need to be consistent. Last and most important (at least of what I can think of for now), you need to be a VERY positive thinker. There is SO much negativity in the world of advocating, and you need to have a way to keep others from bringing you down while helping to lift others up at the same time.

So why have I chosen this as one of my paths in life?  I've chosen it because I want to make a difference in the world.  I want to be the person I wish I had when I was younger.  I want to help others and myself at the same time.  When I feel as though I cannot keep going, the love from others helps me to remember that I have a purpose.

I will never forget the first person I helped.  A child was struggling with getting their diaper changed, to the point that they were having meltdowns.  The child was doing fine, but suddenly had trouble with it.  I asked the parent if anything was different about the process, and they said they had changed from cloth to disposable diapers.  I told them to go back to the cloth, as it probably feels better on the skin.  They switched, and the meltdowns stopped.  I had helped a parent to understand their child and the child to feel better.

Sure, advocating can be hard, but it's totally worth it.

I've heard so many people tell me that if I don't eat something, I'm not going to get anything else.  That I don't have a choice in the matter.  For me, this is exactly how it is all the time.  If I don't like something, I literally won't eat it and I would rather go hungry than force myself.  I do this on my own sometimes because I get in moods where I don't feel like eating anything in particular.  I don't have an eating disorder, I'm just VERY picky.  I WILL throw it up (body's automatic reaction, not a choice) if I eat something I don't want to.  Don't tell me that if I don't eat it, I don't have to have anything.  Ask me if I am hungry.  If I am, help me to find a way to eat what you have cooked.  It could be as simple as taking out spices or cutting up the food into smaller pieces, or even setting a plate aside for me to fix it the way I want to on my own.

What happens when I have a meltdown? All I can do is think. I think about everything that I'm struggling with. I think "what am I going to do about it". If I don't know, I cry/scream/comfort myself and move on to the next issue. I go through these issues one by one until I have nothing left to think about and I've let out my emotions for all of them. If I don't do this process, then I will shut down mentally. I will not think about the issues at all and I will not care about them. That's why, even while they are no fun, meltdowns are a part of my life.

 ***UPDATE!!!!!  I am now selling these bracelets for $10 each internationally, (US is still $6 each), by MONEY ORDER only!  Money orders MUST be cashable in the US and you MUST verify this with whom you are getting them from.  Follow all other instructions.

Last year, I sold enough of these to buy an iPad and military grade screen protector and case for a class of kids with Autism. I hope to sell even MORE this year!

I've started it up again!  I now have a new PO box  to collect orders for my Autism Awareness Duct Tape Bracelets. Each one is handmade by myself. I have Aspergers. They are available by money order only in the US. Here is what they look like. They are $6 each ($3 goes to help people with Autism, and $3 helps to cover shipping and material fees, as well as to help sell more bracelets.  Any leftover money will be donated as well.) Let me know if you are interested.  They come in Small, Medium, Large, and Extra Large. (Most women fit a Small or Medium. Men tend to fit Large or Extra Large. They go on like a bangle bracelet.)  To order, please follow these instructions EXACTLY (otherwise, it's difficult for me to process your order correctly) :

PLEASE use a return address label and PRINT (neatly, I cannot read handwriting very well) your name and address as well as the number of each size bracelet that you would like.  (Example:  1 small bracelet and 2 large bracelets)  Send this information, along with $6 per bracelet (Money Orders only, and only shipping in the US***, sorry!) to:

Erin Clemens

P.O. Box 1873

West Chester, PA 19380

Also, please go to the facebook page and "like" and "share" the page!  This is important to help spread more awareness!  https://www.facebook.com/AutismAwarenessDuctTapeBracelets

A better idea for measurements of the bracelets:

Small bracelets have an outside circumference of 9.5 inches or less

Medium bracelets have an outside circumference of more than 9.5 inches but no more than 10 inches.

Large bracelets have an outside circumference of between 10.25 inches and 10.75 inches.

Extra Large bracelets have an outside circumference of about 11 inches or more.

My wrist size is about 6.5 to 7 inches around, and I fit well into a medium, while JUST fitting into a small.

I don't like these kinds of pictures.  I use my phone as a way to cope with the overwhelming world around me. That's actually the REASON that I got a phone. Not to talk to people, but to escape when I feel like I'm going to have a meltdown. I don't use it when I drive and I don't use it at work.  I ALWAYS have it on vibrate or silent.  I don't talk on it in the library or at the movies.  I don't even have blue-tooth.  But I WILL use it if someone is talking to me and I can't process what they are saying because I need a break. I'm respectful, but I also need downtime.  Now I ask that you respect THAT. 

The other day, I went to visit a teacher whom I haven't seen in over 10 years.  It was wonderful to reconnect with someone who helped me through my school years.  My favorite topic we discussed, however, was about the duck.

I really love ducks.  I feel they truly represent me, and I never realized how much so.  On the surface, they may look perfectly fine, happy, and healthy.  Underneath, however, is what people forget about.  How hard they may be paddling just to stay afloat, and how close they may be to sinking.  I don't say this to scare people.  I just say it to remind them to look at the whole picture.  I may be doing well, but I work SO hard to be here.

I feel like everyone is yelling at me to make more time for them, but I honestly just can't.  I have work, doctor's appointments, autism services, presentations and more.  People start asking me "Well, do you not want to do this?" and it makes me so frustrated.  It's not that I don't WANT to do these things, it's that I can't help the fact that there aren't more than 24 hours in a day.  I don't want to give up ANYTHING, and the fact that people are asking me to choose makes things even more difficult.  I need to make more money, I need to stay healthy, I need the autism services, and I need them ALL to make sure my life keeps moving forward.  How can I choose what's best for me if what's best for me is NOT making a choice?

My poor baby, Charlie, the hamster, is dealing with some issues right now.  He keeps scratching at himself excessively.  He will just sit in the corner of his cage, in his wheel, or in his bed and scratch with his hind legs.  After looking up about this online, he could have mites.    The good news is that, because I work at an animal hospital, I get free pet exams.  So I will be bringing him in to see the vet in a day or so.  Let's all hope that everything checks out okay.

Well, the other day it was pretty cold (in the low 20s or the teens, and I'm taking Fahrenheit!) and when I was at work my hand almost froze to the doorknob!  Literally!  It started to stick and I had to quickly pull it away so it wouldn't completely freeze!  I don't like to wear gloves, but I never really noticed this fact until that day.  I also never fully understood WHY I don't like to wear gloves.  It's not because my hands are not cold, but it's because of sensory issues that I have which are part of the Aspergers.  See, when I wear gloves, then I get hair in my face.  So I go to brush the hair out of my face and then there's static, which makes my hair go right back into my face again.  THIS tickles my face, which makes it ITCHY, and since I'm wearing GLOVES, I have no fingers to scratch the itch, and it's just a mess and complicated!  So I stopped wearing gloves quite a few years ago.  I only ever wear them when I actually need to shovel snow or something and be holding onto something REALLY cold for a long time. 

But, then I met this friend on facebook.  She told me that she had this spare set of fingerless gloves.  Not just the kind with a hole for each finger, but literally just a hole for the thumb and then one BIG hole for all four fingers.  I realized that I'd never tried something like that before.  So she sent them to me, and guess what?  THEY WORK!  No more static!  No more itchiness!  (And if I do have an itch, I have the fingers to scratch it!)  But best of all, NO MORE FROZEN HANDS!

I'm not saying these gloves are PERFECT.  (I still get fibers everywhere, and I still have cold fingers.)  However, considering the fact that my hands are not literally freezing to things, it's a step in the right direction. 

Here are some other issues with clothes that I personally have due to sensory issues:

Socks:  MUST be the right height, otherwise it feels strange.  CANNOT have any uneven fuzz or seams on the inside (think of the feeling of a rock in a shoe).  I usually end up getting the exact same brand and type and color, and that way if I ever lose one, it doesn't really matter.  I don't even put them in pairs anymore, since they are all exactly the same.

Shirts:  MUST be the right material, and the neckline must be the right style.  Shirts ALWAYS have to have short sleeves.  (I wear my hoodie over top if I get cold.)  No lace (too itchy) unless it's on the outside ONLY.  No cuffs on the arms.  No button-ups (too tedious) and no zippers (too cold).

I have family.  My immediate family lives closer to me, but my extended family lives out of state.  This means that I have to go on "vacation" to visit them, since it doesn't make much sense for them all to come out to visit the few of us.  The problem with this situation is that, as someone with Aspergers, "vacation" and traveling stresses me out more than it helps.  I REALLY want to see my family, but the stress of that traveling and lack of routine and comforting space takes away from the joy of the visit.  Instead of being able to spend time with the family, I usually end up tucking myself away, having meltdown after meltdown, and unable to deal with so many people at once.  It's so bad that I haven't seen my family in about 5 years.

But the other day, I noticed something.  As much as I enjoy hanging out with a few people in person, I tend to MEET people better online.  I tend to interact more easily and understand people better.  I have time to process what they say, without the pressure of face to face communication.  If I need a break...well, I just don't respond.  And now the social networks have begun to help me get close to my family again. 

I understand the RULES of social networking better than I understand the rules of being social in person.  Likes and shares on facebook are nice.  Favorites and retweets and mentions on twitter are all nice.  Unfollowing or unfriending are signs that someone isn't happy, and it's more complicated.  Blocking is when you don't want anything to do with them.  I GET this.  This I UNDERSTAND.  Rather than those crazy, hidden rules of social interaction in person, I have found a way to socially interact pretty well online.

And by using this method that I understand, I can now have better relationships with my family.  I don't HAVE to call them and visit them to show them that I care.  I can "like" their status or "favorite" their tweets.  They know that I'm listening and trying to connect, and not just ignoring them!  I'm just using a different way to interact.