Just because you have Asperger’s doesn’t mean you get to be an ass.

Yes. I said it and I’ll say it again.

Having Asperger’s doesn’t mean you get to be an ass.

I realize that Asperger’s is a neurological disorder that affects the way we interact with others. We miss social cues. Sometimes we aren’t able to externally convey the emotions we feel inside. I get it. I do. I live it every day. I know how it feels to feel misunderstood. I know how it feels to constantly doubt yourself.  I know how it feels to be bullied, belittled, and left out. If you have Asperger’s, you probably know those feelings too.  We may not pick up on social cues, but our experiences have certainly taught us how to spot when someone is being sarcastic or cruel.

You know how it feels when someone ignores you.

When someone dismisses you.

When someone is deliberately rude to you. With experience, you can even learn to tell when others are being hurtful under the guise of being nice.

You know how much that hurts. That’s why you don’t get to do it to others. Because it hurts. Having Asperger’s is no excuse for being rude.  I realize that social cues are hard for us, but common sense is not.  Logic is not. If you’re not sure if you’re being rude, you can:

Ask yourself “Would this hurt if someone said/did this to me?”  If the answer is “Yes”, then it’s rude.   Your friend is excited talking about his favorite reality TV show. You think reality shows are a waste of time.  Telling your friend that you think his show is not worth talking about is rude. Would you want your friend to tell you that something you are passionate about was worthless? This is especially true if the person is talking about their family, children, or pets. Although we could care less about the 50 baby pics of the SAME BABY that all look just alike, to the person sharing them, they are precious.  Because it is important to them, we should show them the same politeness we would want if we were sharing something we are passionate about.

* Ask yourself “Is this constructive? or is it just critical?” Your friend is trying to change her hair style. She has put her hair into pigtails like a toddler would wear. She asks what you think.  A rude, critical response would be “It looks childish. You’re not two. That hairstyle is for toddlers.”  A constructive response would be “I don’t think the pigtails really bring out your best. I like it when you wear your hair parted on the side because…”  A constructive response can encourage your friend to change something without hurting her feelings.  The end result is the same – change. The difference is that one response is hurtful and the other is encouraging. Would you want to be hurt or encouraged?

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* Remember, just because something is true doesn’t mean it is something that needs to be said out loud.  I think this is one of the hardest lessons for Aspies. If something is TRUE, why can’t we say it?  I mean, it is the truth, right?   In an online group, a woman said she told a coworker that he “smelled like a hobo on a subway”.  Was he smelly? Probably.  Would this comment have hurt her if someone told her she stunk? Yes.  Was it constructive? No. Critical? Yes.  Then it shouldn’t have been said. Her “truthful comment” hurt her coworker. It was mean and unnecessary. Just because a statement is true doesn’t mean it isn’t hurtful.

I realize that most Aspies I have met/talked with online would rather have someone tell them the truth straight out. For us, a lie (even a little one) to sugarcoat the truth is offensive. If I look ridiculous, tell me.  For the love of Pete, please don’t let me leave my house smelling like a week’s worth of body odor! This is another way the NT/alltistic community is different than us. Although we would want a friend to be direct and say “Whew. You smell pretty bad. Maybe you should hit the showers before we go”,  most NTs find this offensive. They may want to know about the BO, but they want you to tell them sweetly, softly, gently. For the straightforward Aspie, sometimes this can feel like a lot of unnecessary dialogue, but it is considered rude to be direct and polite to pussyfoot around the issue.

* Social niceties are a part of society.  It’s important to say “please” and “thank you”. It’s important to take part in polite conversation.  I realize most Aspies find it annoying that alltistic/NT people say “How are you doing?” when they really do not care how we are doing.  They really don’t want us to answer honestly and tell them all about our day. They expect us to say “Fine.”  It’s a pointless conversation really, but it’s part of social etiquette. So is talking about the weather. “Nice day we’re having.” “Looks like it’s going to rain later.”  These are pointless conversations strangers have with other strangers because unlike Aspies, NTs seem to have difficulty standing next to each other and being silent.  Although the conversation is pointless, the intent is to connect (albeit for only a few seconds) with another person. Ignoring the polite rules of society because we feel it is unnecessary is another behavior that makes others think Aspies are rude.
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* We have to be accountable for our behaviors too.  We say we want others to think of our feelings. To get them to do this, we have to do the same.  We have to think of others’ feelings too. We know we need our down time to regroup, but we have to make sure that we aren’t ignoring others in the process.  While meltdowns are sometimes inevitable for us, we have to ensure that we aren’t hurting other people with our behavior during a meltdown. (Some Aspies have admitted they say the most awful things to their spouse during a meltdown.) Sometimes we can’t help how we feel: overstimulated, overwhelmed, exhausted.  We may not be able to control the emotions, but we do have some control over what we DO with the emotions. We need to be accountable for these actions. Again – how would we feel if the behavior we just displayed was done to us?

* Having Asperger’s is a reason for our behavior. It’s not an excuse. Our diagnosis allows us to understand our behavior. It gives us a sense of community as we find other people with Asperger’s to relate to.   It is important that we identify our strengths and our limitations, but it’s not an excuse not to try. I see so many young Aspies online who have said things like “I have Asperger’s so I don’t like people.” No.  That’s simply not true.  You don’t get to use Asperger’s as an excuse to be rude. You don’t get to use it as an excuse not to try. There is a difference between knowing where to draw the line and not even making an attempt.  If we want people to understand, we have to try to meet them halfway.  A friend invites us to dinner. Maybe we know that we can’t tolerate a loud, noisy restaurant on a Friday night, but we know we can handle a familiar restaurant at lunch time. Make a lunch date instead. Don’t simply give up on meeting your friend because you “have Asperger’s”.

Sometimes it is hard for us not to be bitter. Living in a world that often does not understand us and does not make exceptions for our differences is exhausting, but we aren’t doing this for the NTs. We’re doing these things for US. Because changing these behaviors makes us  better. These changes makes us kinder and more empathetic. They help us take accountability. They help us say “Asperger’s is part of who I am, but it isn’t ALL that I am.” And you are so much more than just an Aspie. You are.

You are kind.
You are caring.
You would never want to intentionally hurt someone you care about.
You want to be a good friend even if you don’t always know how to do it.
You have a big heart hiding behind your introverted self.
You have an amazing amount of compassion.
You are loyal and hardworking.
You want to be accepted.
You want to find your place.
You want to play the game, but you can’t seem to figure out the rules.

The rules start here.
Treat others the way you want to be treated.
Be honest but be nice about it.
Remember that not all truths (especially opinions) need to be said out loud.
Be polite, even if it seems silly.
Know your limitations.
Take accountability for your actions.
Don’t ever, ever use your diagnosis as an excuse not to try.

And finally – never give up.  You are not alone.

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I am not fine Taco Bell.

I love you Taco Bell, but your drive thru is making me uncomfortable.

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When I pull into any other drive-thru, a voice comes through the box and thanks me for choosing their restaurant. The cheerful thank you is followed by “I’ll take your order whenever you’re ready.”

Not at Taco Bell.

I pull up to the speaker box in the drive thru. A voice comes through  “How are you?”

What?

How am I?  What? I don’t know. I’m hungry. I mean.. I don’t know.  Do I answer? Do I just order? I don’t really want a CONVERSATION. I just want a Taco. Maybe a bean burrito. Definitely a churro. Churro. Mmmm… Wait. How am I?

It throws me off. Every. Time.

I have Asperger’s, so I struggle with social niceties anyway. I’ve learned it is polite when someone asks how you are to say “Fine, thank you.”  It is a pointless exchange. A waste of breath because the people asking usually do not care how you really are, yet we say it all day. How are you? Fine.  Ugh.

Why Taco Bell?  Why?  Does your cashier REALLY care how I am today?

Why can’t your employees just say “Thank you for choosing Taco Bell!  I’ll take your order whenever you are ready.”  That’s a polite and honest exchange.  The truth is, you want my order and my moolah.  I want your tacos. It’s fair really. So why the facade?

The next time I pull up to Taco Bell and that voice warbles through the speaker and asks “How are you?”  I may just answer honestly. I’m exhausted. I just finished a twelve hour shift. I am eating this meal in my car on my way home from work so my kids don’t get jealous that mom got Taco Bell while they had to eat a home-cooked meal. (Oh the horror). I’ve been taking care of everybody else all day long at work. I’m pooped out. I’ve been smiling and talking and being polite all day long and I’m done. I’m just DONE. I just want to scarf down my tacos and pray that I get more in my mouth than I do on my shirt.  The last thing I want is another fake conversation.

I love you Taco Bell, but please… just take my money.

For those who think most people really “mean it” when they say “How Are You?”  I give you this 🙂

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When Logic Fails: Asperger’s and Grief (part two of two)

How does a person with Asperger’s process death? Do we experience grief the same way that neuro-typical people do?  These were my questions as I struggled to understand my personal grief when my niece died last October.  In my last blog, Goodbye Small Fry, I talked about the death of my niece Vanessa.  I shared the story of her loss so you could see what a profound loss it was.  I wanted you to understand that it wasn’t a small loss to me. It was a deep, searing loss.  My life is filled with memories of my nieces and my daughters together.  I lost a piece of myself when she died.

After her death, I felt like my grief was somehow different than the rest of my family. Like a typical Aspie, I tried to research it.  I googled Asperger’s and grief. I found almost nothing pertaining to ADULT grief.  There were a few scattered articles on explaining death to your aspie child.  I reached out to my Aspie community.  Those who had experienced a loss were very supportive, but many of those who did not have a similar experience could not relate.  They wanted to, but without any personal experience, it was difficult for them. I did not get upset. I understand all too well how it feels to not be able to ‘be there’ because you cannot understand – no matter how bad you want to.

When I removed “Asperger’s” from my Google search and just searched for grief and death, I saw an immediate pattern.  Most of the results talked about Elisabeth Kübler-Ross’s five stages of mourning and grief.  According to the web, these stages are universal: experienced by all people everywhere in the world. They can be experienced in any order and with varying levels of intensity. People grieving can go back and forth between stages as they work through them. Acceptance, the final stage, can take years to reach and some people may never reach it.   Here are the five stages of grief:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

It is said that one must experience all five of these stages in order to feel more peaceful about the loss they have experienced.

I can only speak from my own experience, but as a person with Asperger’s, I disagree.

As heartbroken as I was, I did not feel I experienced grief the same way as my neurotypical family members did. While my family members struggled with the first four stages of grief,  I only struggled with one.

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I had no denial.  My niece’s sudden aneurysm left her brain dead. Connected to a respirator and different monitors, she appeared to be sleeping. The respirator made her lungs expand and collapse – it gave the impression she was breathing.  Even though a piece of my heart wanted to believe that she was still “in there”, my brain knew she was gone.  It would not allow my heart to fantasize that some day she might come back to us.  She was gone. It was logical.  There was no denying it.

I did not experience anger either.  I watched as others felt angry at varying things, but I could not feel anger. Angry at what?  There was nothing to be angry at.  No one would have ever thought “aneurysm” in an otherwise healthy sixteen year old girl. To me, there was nothing/no one to be angry with.

I watched her mother and father bargaining.  I listened to the “if only” statements.  “If only we had..” “If only she had…” I could not feel the need to bargain because my logical brain understands we CANNOT go back in time. There is no do-over. There is nothing we could have done and there is nothing we can do now that will ever bring her back to us. There are no bargains to be made.  All the “What ifs” in the world cannot change where we are now.

Depression, however, hit me like a brick wall. Overwhelming sadness consumed me.  I felt immobilized by my sadness. Immobilized and confused.   I cried for my niece. For the loss of her. For the loss of all of the things she will never do. For the future she will never have. For the memories she will never make.  My heart broke for her.

I felt like every ounce of my energy was poured into processing the depression I was feeling.  I am not in any way minimizing my family’s grief, but at times I wished I could feel denial, bargaining,  or anger – anything but this crushing depression and sadness.  In my head I imagined we were all given a “pitcher” of grief.  Where they had four glasses to pour their grief into, I only had the one and I couldn’t stop it from overflowing.

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For individuals with Asperger’s, I believe there is another facet of grief that we feel.  A facet that maybe only we are capable of feeling – Internal Conflict.  Aspies are logic based.  In almost all instances in our lives, logic automatically overrides emotion.  The brain prevails over the heart almost every time and the heart stays quiet.  (I realize the “heart” doesn’t actually control our emotions, but for the rest of this blog, I am going to refer to the part of the brain that controls emotions as the heart.)

As I was trying to process the loss of my niece, I realized that for the first time in my life, my logical brain and my emotional heart were at war with each other.  I could not function.  Logic failed me here. 

My heart wept. It did not try to reason. It just hurt.  I felt like there was an elephant sitting on my chest. I couldn’t breathe. I didn’t want to move. Everything was a reminder that she was gone and that fact was too much for my heart to bear.

My brain, on the other hand,  argued non-stop:
You believe she is in Heaven. Why are you sad for her? Isn’t Heaven a better place than here?”
“Would you want people to be sad for you if you were in Heaven?” 

“You believe you will go to Heaven some day, so you will see her again. This isn’t goodbye. It’s goodbye for now.” 
“If she were on an extended vacation and could not see or talk to you – would be you sad for her? No. You would be excited for her so why are you sad now?”

Of course, my brain was right.  All of these things were true, yet I was stuck in this looping cycle between my brain and my heart.  Logically there was no reason to be sad. Heaven is better than Earth. Logically it made sense. So why did I hurt so badly?

This loop of brain vs. heart vs. brain vs. heart continued because I could not stop hurting no matter how logically I tried to process it.

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It was maddening.  For the first time in forever, my heart trumped my brain. I was at a loss. I did not know what to do with myself.

I talked with a counselor who explained. “You aren’t grieving for HER. You are grieving for YOU. For YOUR loss.”

That had never occurred to me.  Why hadn’t that occurred to me? It wasn’t the loss of HER future memories I was grieving, but mine.  It wasn’t the things SHE would never do, but the things *I* would never do with her.  I had spent the days after her death helping and planning and doing for others.  These are things I am good at.  For some unknown reason,  I needed permission to grieve. Permission to think of me during this time.  Permission to put logic on the back burner.

I still struggle with grief. I still  attempt to understand why I grieve. It isn’t logical, but like I said, the heart trumps the brain on this one.  The tears come and there is no amount of thinking that can stop them.  I’m not sure if that is the final stage of grief: acceptance. If it isn’t, I’m not sure I will ever find it.

I’m still coping with her loss.  The first of every month is the anniversary of her death.  I used to feel that it was one month further away from her. Further away from the last time I saw her face. Further away from the last time I heard her laugh. Further.

I don’t think of it that way anymore. That was my heart’s way of thinking.

I still prefer logic. And logic tells me that every month is one month closer to her because even for me, death is inevitable.

 

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If you are struggling with grief and this blog has touched your heart in any way, leave a comment.  It’s nice to know there is someone out there. ❤

Goodbye Small Fry: Asperger’s and Grief (part one of two)

There were four of them. Four girls, but Vanessa was always the smallest.

My daughter Ali and my oldest niece Christina were born in  1995 – just two months apart. Immediately inseparable. Both had blonde hair. Both were calm, logical, book-reading girls. When they were small, people used to think they were twins.

My stepdaughter Tori and my youngest niece Vanessa were born four months apart from each other. They were both two years younger than their big sisters.  They were so very much alike. Both were brunettes. Both were girly-girls. They loved to sing and dance and shop and drive their big sisters crazy.  Together, the girls were my Fantastic Four.

My youngest niece Vanessa was always tiny.  I even called her my “small fry”.  She may have been small in size, but she was big on personality with a big, beautiful smile to match.

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Pictured above:  L-R on the rocks:  Daughter Ali, Niece Vanessa, Niece Christina,
Pictured on the Right: In the back, daughter Ali, Niece Christina. In the front, Niece Vanessa, Son Joe, Stepdaughter Tori.

The girls have grown up together. From diapers to driver’s licenses – always together.  I look through my photos and see picture after picture of them smiling, playing, laughing.   Family vacations to Disney, Universal Studios, Holiday World.

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Pictured above: Stepdaughter Tori, Daughter Ali, Niece Christina, Niece Vanessa. Son Joe in the front
Pictured to the right, Ali, Vanessa, Christina

We’ve always been close.  We’ve always lived near each other.  My brother and my niece’s mother divorced when the girls were five and three, but I stayed close to the girls and their mom. The truth is, I couldn’t bear the thought of not being close to them.  We all lived in Arizona. When I moved to Illinois in 2000, my nieces and their mom followed soon after.  Together again.

In 2012, my husband and I moved our family to Florida.  We didn’t feel bad.  The girls were getting older.  They were busy with their teenage lives. The oldest girls – Christina and Alison – were going to be seniors. Soon they would be off to college.  It was time for us to relocate.

Christina and Ali  graduated high school last year – May 2013.  Christina was old enough to drive, and last summer my nieces drove down to see us (and the beach).  The girls were together again.  They took an overnight road trip to the Wild Adventures amusement park four hours away.  They went to the mall and the beach. They were teenagers being teenagers.  Two 18 yr old and two 16 yr old girls.  I wanted them to have this time together.  Life after high school and college changes everything. People get married. They move away.  Life pulls even the closest people apart.  I wanted them to have one more good summer vacation before the older girls went to college.  We didn’t know then that it would be the last time we would see Vanessa.

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Pictured above: The girls at the Wild Adventures Theme Park June 2013. Vanessa, Tori, Christina, Ali
To the right: Selfie in the car June 2013: Christina, Tori, Ali, and Vanessa

At the beach they made a crazy sand castle and put their intials on it: CAVV.   They took turns posing with it. Below is Vanessa and their castle.

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Sunday, September 29th, was just like any other day. It was just after six in the morning. I was on my way to the hospital to go to work when I got the call.  Vanessa’s mom said she needed me to come right away.  Vanessa had fallen and hit her head. It didn’t look good. They had life-flighted her to Kosair’s Children’s Hospital but she wasn’t responding. Could I come now?  I called in to work and turned the car around. I stopped long enough to pick up my daughter Ali. My husband stayed home to watch the boys.  My stepdaughter was in Tennessee with her mom.  There was no way she could come with us. On the way from Florida to Kentucky, phone calls kept coming in.  I spoke with the nurse taking care of my niece. Pieces of information filtered through: pupils fixed and dilated. Aneurysm.  Hypoxic brain injury.  I am a nurse. I knew these terms.  I knew what they meant but I couldn’t process them. I just needed to get there.

We drove all day and made it to the hospital late that night.  The prognosis wasn’t good.  She didn’t fall and hit her head.  She collapsed because an aneurysm in her brain burst.  She told her mom goodbye, walked out her front door and collapsed.  A neighbor started CPR almost immediately and they took her to the local hospital. At first, they thought there was hope so she was life-flighted to Kosairs, but there was nothing that could be done.   It was already too late.  Her brain was already too damaged.  The team of doctors had pronounced her brain dead that afternoon.  In order for her to be officially brain dead, the doctors would do a second test the next day.  If she failed those tests, she would be considered brain dead – legally dead.  Dead? I couldn’t even process that word. Look at her there.  She looks perfect.  Dead? no. No. NO. NO!!

I think brain death is the absolute worse death possible really.  It makes you feel so helpless.  I’m a nurse and even with all of my nursing knowledge I could not seem to believe what the nurses and doctors were telling us.  I’d look at her little chest rising and falling and her heartbeat on the monitor. I would hold her hand. She was so warm. But they kept saying “she’s gone.”  In my head, I knew it was the respirator that was making her breathe still, but… I just could not convince my heart that she wasn’t sleeping.  I can remember kissing her on the forehead and her mom saying “You’ll wake her up…” and cutting herself off and crying as she caught herself.  We all wanted her to just wake up. Please. Please. just. wake. up. Vanessa. Please. But she didn’t. She couldn’t.  She never did.

The next day, October 1st, the doctors tested her again.  She failed their tests for the second and final time.  They declared her dead via “brain death”. It was official. They were so nonchalant.  We were so heartbroken. Dead.  But..she’s so warm.  Not a scratch on her. We were reeling.  They were saying she was already gone, but looking at her lying there,  it didn’t feel like she was gone.  Even though we didn’t want to, we knew in our hearts they were right.  The brain does not heal.

Vanessa had only had her license for only a couple weeks, but she had agreed to organ donation.  We wanted to honor her wishes.  Two days later, she became an organ donor.

The hardest thing – the thing I still struggle with – is knowing that in order to honor her wish to be an organ donor, we could not turn off life support.  Her heart would beat and her lungs would breathe until the transplant team took her organs.  It felt like we were sending her into the operating room to die even though they had officially pronounced her ‘dead’ the day before.  We honored her wish, but it hurt so much to not see her take her last breath. To not be there and hold her hand. It felt like we were sending her into the OR to die alone.  I don’t think anyone can understand how that feels. I know her gift will help others avoid the grief we are going through now and I don’t regret it.  It just hurts.

The organ donation people were very nice.  They made fingerprint necklaces for us with paint and clay. They put her handprint on canvas for us. This is what we have now. Memories and photographs. Fingerprint necklaces and handprint canvases. It just isn’t enough. ❤

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Pictured above: Vanessa’s handprint on canvas-my daughter Ali painted the scene around it.
Pictured to the right: A collage of pictures of Vanessa.

Vanessa was well-loved. She baked crazy cupcakes and brought them to school.  She played soccer. She swam. Because she was so small, they called her Baby V.  After she passed, her classmates at William Henry Harrison High School in Evansville, IN wanted to do something to honor her.  They decorated an overpass with the words”We R Vanessa Strong.”  They knew she loved Marvel’s Avenger’s and made “Vanessa’s Avenger’s” shirts. Without being asked to, they sold the shirts to help raise money for her services and medical care.  They sold out of the first batch of shirts within the first few hours.

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At the first football game after she passed, the stands were filled with fans wearing Vanessa’s shirts. Even the opposing team – Castle High School – filled their stands with Vanessa’s shirts. So much love.

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Pictured above: Vanessa’s High School: William Henry Harrison High School

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Pictured above: The opposing team: Castle High School

I think about those words “Vanessa Strong” and it makes me smile.  I think about her tiny little frame. Her great big smile.  Her silly faces. Her fun-loving attitude. Her laughter. Vanessa Strong?  I don’t know.  Vanessa Spunky. Vanessa Enchanting. Vanessa OhNoShe’sNotSingingAtTheTopOfHerLungsAgain.  Vanessa WhatDidYouPutInThoseCupcakesNow?  But I would have never thought Vanessa Strong.  That’s what we are.  That’s all we can be now.  Strong.

We love you small fry and we miss you. Every day. ❤

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Pictured above: Stepdaughter Tori and daughter Ali in their Vanessa’s Avengers/Vanessa Strong shirts.

If my story has touched your heart, please take a few seconds to comment. ❤

You have the power to change lives.  Register to be an organ donor at your local Department of Motor Vehicle or here –> at Donate Life