Archive | January 2012

Meltdown #2,307

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Just when things seemed to be getting better, I’m reminded of my Asperger Syndrome. Last night there was a ladies event at our church. I was asked to run the child care with my 15 year old little sister for this Ladies Night. I did well, but once the event was over and I wanted to go home, I had a meltdown. A mild meltdown, but still a meltdown. 

We arrived and took the children over to the child care building. There were 5 kids. The youngest was about 2 and the oldest was about 10. Nothing I, Super-Babysitter, couldn’t handle with my trusty sidekick, Babysitter-in-Training. They played, we sat them down for a movie and a snack, and colored with them. We kept the chaos to a minimum, made sure no accidents occurred with the potty training two-year old, and I was giving my little sister little tips here and there. We made decisions together so that there was no controversy in our decisions. Overall, the child care was a success. No child was injured or had hurt feelings. No toys were damaged and we didn’t have any crying children that missed their Mommy. We had fun playing with them. Ladies Night ended and the parents received their children. I was tired and wanted to go home.

This is the part of the evening where things turned from better to worse. Maybe I’d just been over stimulated that day, I don’t know. A headache swiftly attacked my head. I wanted to go home. I wanted to be in my “safety zone” with my family. I had to wait for my mom to be done talking to her friend. I waited for a little while, but the impatience overtook my whole being. She told me to wait. I didn’t want to wait. I wanted to go home. We were apparently waiting for the guys to finish the movie they were watching at my house with my dad before we went home. My mom wasn’t home, how could she possibly know whether or not the movie was over? She had called, but 25 minutes beforehand. “The movie could be over by now. Let me call and check.” I reached for the phone, but one of my twin little sisters got to it before I did. I wanted to make the call. I wanted to go home. I wanted to take care of it myself. I was being selfish and childish.

I was having a meltdown. Body rigid, teeth clenched, and hot temper, I was the first to arrive home. I went straight upstairs to my room to deal with it before joining everyone downstairs. I was in tears and angry over absolutely nothing. I didn’t understand and that just frustrated me all the more.

I was reminded yesterday that AS will affect me forever. I will never escape the fact that I have it. I was very mature, then extremely childish within just a few minutes. I may just look like a young adult that refuses to grow up, but it’s not like that. I want to be a mature adult. I want to be able to handle things without my mom. I’m a young adult and wont live with my parents forever. In the future, I’ll try to deal with it a little better, but it makes me ask questions. “What happens when I move out and have my first meltdown, all on my own, without my mom and sisters there?”, “What will people think of me?” “Will I be able find anyone that will be understanding and supportive when I move?”, “When I start dating, will the person I choose be able to soothe me in the middle of a meltdown, or will he just not be able to handle it and leave me stranded?”, and “Can I do this?” I question myself and my abilities to be on my own. The future is yet unknown, and as for now, I’ll just take it one step at a time.

 

Frustrated,

Allie.

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This entry was posted on January 28, 2012. 6 Comments

Percentages

All relationships, family, marriage, platonic, dating, etc., consist of percentages. These percentages fluctuate depending on the situation.It is the goal of most people to have a 50-50 relationship. Give and take.

In average relationships, 60-40 and 70-30 are occasional realities. With and Aspie, however, 80-20 is quite often a reality. Sometimes we need much more than we can give, to no fault of our own of course. Some days, I need to be left alone. Some days, I need to be surrounded by family. Some days, I’m so overwhelmed by whatever it is that’s going on that I find it very hard to act in an adult-like, mature manner. And believe me, it’s just as frustrating to us that we feel like little kids as it is to you that we act like little kids at times. My mom explains it like this: sometimes she needs everyone else to act a certain way to make things easier on me, and sometimes she needs me to STOP and act a certain way to make things easier on everyone else.

Having the mind of an Aspie, I have an easier time seeing things clearly in numbers. Looking at the “statistics” I mentioned earlier, it bothers me that the numbers are so dramatically uneven. There are good days and there are bad days. Because my AS is generally mild, most days are 50-50, but there will be days that will be 60-40, 70-30, or even 80-20. I’m lucky enough to be able to go to bed on those uneven days and know that there are people in my life that love me enough to be that other percent; that 60%, 70%, or even the occasional 80%. I hope that this is the experience of all Aspies, to have people in their life that are willing to go the extra mile for them.

 

Loved,

Allie.

Guest Writer: Significant Others

I chose to have someone else write about “significant others” and Asperger Syndrome because I don’t feel that I have sufficient experience in the matter. My friend, Erin, was in a relationship with someone with high functioning autism. I asked her if she would be comfortable writing about her experience for my blog. Obviously, she agreed to help me out. I asked her questions, she answered them, and then she wrote a little something from the heart. Hopefully, what she has written will help Aspies to better understand what they need to work on and help the “normal” people in a relationship to have patience for their Aspie. 

 

Still Here,
Allie.

 

Significant Others

Q: What areas of your relationship were most affected by his Autism?
A: It was mostly communication, both in a good and bad way. In the beginning of our relationship we talked about everything, which was good. We would spend hours talking on the phone about complete nonsense. In the end, it got bad, we knew everything about each other and we had nothing to talk about. We would communicate less, and it would start most of our fights.

Q: How did you deal with his meltdowns, strange habits, lack of communication, etc.?
A: His meltdowns were pretty mild, I mean considering I wasn’t really present at the time of bad explosions. However, he did get overwhelmed or angry, and after a couple of months of our relationship I noticed the signs and facial expressions. I was unsure of how to handle his meltdowns, sometimes I kept my space and sometimes I didn’t. He didn’t really had strange habits, just less common ones. He found playing video games for hours entertaining, he liked watching anime cartoons late at night for hours, and most of all he liked being inside in his own safe and comfortable home. His habits weren’t that much of a problem, considering how I was happy just being with him and spending time with him.

Q: What behavior/habit of his hurt you the most?
A: It was a couple of things, like when he was overwhelmed, I felt it was my fault and I felt hopeless when I couldn’t think of a way for him to calm down. Another thing was that when he played his video games when I would come over to his house. Yes, I tried to play but it just frustrates me, so I would watch, but after a long time I felt that he played because he was bored with me or our relationship was going on a downhill spiral of boredom.

Q: Do you think he was even partially aware that his behavior was hurting you?
A: I don’t believe so, until one day we had a fight and I told him. It was out of anger and said at the wrong time, but he eventually did find out.

Q: Was it his decision or yours to end the relationship? Why?
A: Well in the last month of our relationship we were questioning it a lot. One day we fought, it wasn’t as bad as a lot of them, but we were still questioning it. He asked me if I still wanted to be with him and I said we should break up, but in the end it was mutual. The reason I said we should because I could feel that he wasn’t happy anymore, that I was holding him back from hanging out with his friends and college life. I still love him now, even after a little over three months after that event.

Q: Do you feel that the relationship was worth it?/Do you have any regrets?
A: Yes, I do feel that the relationship was definitely worth it. Even though it makes me sad to think about it, I always remember all the good times we had and even when I’m mad, I never regretted it. Ever.

Q: If you were able to have a “do over,” what would you do differently?
A: Some stuff. I would have tried to see things his way. Things I didn’t understand or even tried to understand. I was selfish and took him for granted, I wish I had not done that.

Q: What is the most important thing/lesson you got out of the relationship?
A: He would talk about us in the future, and it scared me. I slowly accepted the fact that we would be together for a long time and I became dependent on him. After we broke up, I felt so lonely. I missed talking to him and hanging out with him, but I realized that I didn’t need him to be happy. I have become more independent since we broke up, and if he is reading this, I want him to know that I am grateful for him to come into my life.

Q: Is his autism something that influenced your decision to become a part of Forever Friends? (If you do talk about this, explain briefly what Forever Friends is)
A: To put it simply Forever Friends is a program where kids in my local high school mentor kids with disabilities, whether they come from elementary, middle school, or high school, there are 20 of us there to mentor 20 out of the 400 + disabled kids in our small town. He did influence me to become apart of forever friend. Until about a year and a half ago, I found kids with disabilities scary, I was even scared of one my deceased family members with down syndrome. I found them scary because I didn’t understand why they weren’t “normal.” They looked and acted different from what I was used to, so I kept my space. It wasn’t just me either, a lot of my peers did the same, and I assume it was for the same reason. After dating him, I realized they were just as normal and anyone else. He has a little sister with autism too, and I love her. She was timid at first, but she warmed up too me, now when I see her she always feels comfortable with me. Both of them influenced me to let everyone know that just being with them is amazing, and that even though kids with disabilities seem scary, they are the same as you and I.

I was only 15 years old when I started dating him, and he gave me the most wonderful year and 3 months in my life. He taught me that it is ok to love and trust people. He taught me that it is ok to not put up a front and act tough. Which I never really knew how to do before, and I hope he is reading this because I want to thank him. I want people to know that even though it didn’t work out with me and him, I do still love him and I want him to be happy. He has moved on, he doesn’t love me anymore, and it breaks my heart. I feel like I have to throw up every time I think about it. I want to beg him to take me back and start all over, but then I think about the day we broke up. I think about the real reason why I said we should break up, I just want him to be happy. I know this sounds cliché, but if he is happy then I am happy. Its all I can really hope for anymore.

 

Living,

Erin.

Guest Writer: Glow in the Dark Sticks

Because I have readers that are parents of Aspies, I’ve been insisting that my mom write something for you. She went through some of the same things that you have gone through and/or may be going through at the moment. I always like talking to my mom about my Asperger Syndrome. She’s understanding, patient, and kind. She let me read what she wrote before I sat down to write this. It made me cry. It makes me wonder if I will have the same concerns. That is, if one or more of my future children ends up having AS. I hope you enjoy reading what my mom wrote and I hope that this is a help to other parents of Aspies.

 

Always,

Allie.

 

Glow In the Dark Sticks 

One particularly frustrating night that had me in tears, led me to great understanding.  It’s always darkest before the dawn, right?  When an aspie is very young, particularly girls, you may not even realize you have a need for diagnosis; girls can be so verbally articulate at such a young age compared to most boys.  There is so much that can be explained away with the phrases, ‘She’s young…she’ll grow out of that behavior’ and ‘She’s just kind of quirky that way.’  The latter statement can be made for everyone, at every age, however, after a certain age; you just can’t make that first statement anymore.  THEN WHAT?

 

A little history;

 

When your three week old is inconsolable and you have done everything you can think of to help, such as: change, lullaby, feed, rock, walk, bounce, etc. and absolutely nothing is helping, THEN WHAT?  You decide that she’s just going to have to cry it out in her basinet.  So, armed with your steely resolve to make it through the seemingly endless screaming you are about to hear; you put her down and the weirdest thing happens…she gets this look of utter relief on her face, as if to say, “Finally.  Thank you.  It’s about time!”, and with that, she turns her tiny face to the side and is asleep in no time, probably before you have even left the room.  She just didn’t want to be touched anymore, you might say, she was “all touched-out.”  Welcome to the new “normal” for all naps and bedtimes to come.

When the family is all dressed and ready to go, loaded in the van, arriving in the church parking lot, you get out and open the slider door to unload the kids and discover your 18 month old is now completely naked AND still strapped into her car seat, so you ask, “What…why?  You’re naked…why are you naked?”  To which she replies, “I don’t wike my socks!”  You say, “But, you took it all off, Houdini!  Why?”  And she states, “Itchy!” as she pulls her hair out of the tidy little pig-tails you had so precisely done half an hour ago.   THEN WHAT?  It dawns on you, over time, that you will have to start padding your departure/arrival time so that you can accommodate these frequent naked episodes until you have eliminated all the offensive clothing from her wardrobe and still have time remaining for her to stop, plop-down anywhere she sees fit, removing her socks and shoes so that the seams of her socks can be remedied.  Welcome to the new normal of getting places on time and fully dressed.

When all the kids are being loud, including your as-of-yet undiagnosed aspie preschooler and she asks you to make the others be quiet because they are hurting her head, you logically point out to her that she is being just as loud and perhaps she should be the first one to quiet down.  To which she responds with holding her ears, rocking back and forth, yelling at them all loudly, “BE QUIET!  BE QUIET!  BE QUIET!” with tears streaming down her very red, little face. Eventually, they all just reluctantly quiet down and look at her, then look at you and complain, “Mommy, she was loud too!”  You raise your hands and shrug your tired shoulders and say, “I know, I know…I think we could all do with a little bit of quiet now, huh?”  THEN WHAT?  Trips to the grocery store, mall, amusement park; anywhere noise (even fun noise) happens, usually ended with this kind of silent confusion.  Welcome to the melt-down mystery I could never solve…can I get a witness?

 

I could go on and on about stories involving food textures that gag, socially taboo statements and behaviors, as well as how she would get up in the middle of the night at 4 and 5 years old to remake her bed because the wrinkles in her sheets had woken her up; but many of you have likely already lived these stories. I have a different story in mind.  She was at school, having ‘one of those days’ where many an inappropriate statement was made by her.  She was out on the field during lunch with a group of kids, one of whom apparently had anger management issues.  One person with AS and another one with anger issues is a very dangerous combination.  My daughter said something that triggered this boy’s rage and in seconds, he had her up, off her toes…by the throat!  THEN WHAT?  Then you worry, every time she walks out the door without you.  Will she?…fill in the blank with whatever she has been doing of late.  Will someone else?…fill in the blank with whatever your greatest fear is at the moment. That is to say, you worry until you can put it all together and recognize trainable moments.  You talk together, and you teach, reducing the fear that it will happen again.  You realize your child is not on the same timeline for learning the skills that give personal freedoms, such as walking places unaccompanied as other children do.  You come to realize that there is nothing wrong with that.  What’s our hurry, as a society, to make every child fit the same mold?  Our personal convenience, I guess.  You seek God and all His wisdom, asking Him to show you great and mighty things that you can not know on your own.  And you rest in the knowledge that He is faithful to do just that.  In time and over time will come digestible bits of wisdom and comfort to help you, your daughter, and all who love you and your daughter.

Together you all make up a community for her that works.  There will always be those who choose to not understand or believe it’s not real.  They choose to not be a part of your community.  It’s okay, I’m sure they have their own issues and this just doesn’t happen to be one that is close to their heart.   Some of those people may even be reading my daughter’s blog. If you are, and you know that you are, it’s okay.  I release you from having to be involved.  Life is too short to force unwilling participants into your community.  I would rather spend time with those who have a heart for it, wouldn’t you?

You are asking why my contribution to my daughter’s thoughtful blog is titled Glow in the Dark Sticks, aren’t you?  Well, I have decided that discovering my daughter’s AS is like having a glow stick.  There are so many conditions in this life that can bring a heart-breaking diagnosis of a life that will be stopped too short, or a lifetime on medication that alters the person you love into someone you hardly recognize, or a condition for which the treatment sounds worse that the condition itself.  For a long time I was dismayed and frustrated and from time to time, my heart ached from a lack of answers to a question I did not know how to articulate; then I experienced the day that I wrote of in my first paragraph.  Something in me snapped that day; I was talking to myself over this frustration and said to myself, out loud if I recall, “It’s like she has social dyslexia!”  Social dyslexia!  What a concept, I ran to the computer and typed social dyslexia into a search engine.  Up popped a million links to websites dedicated to Aspergers Syndrome and/or The Little Professor’s Syndrome.  I was up all night reading.  That day may have been the straw that broke the camel’s back (read: snapping the cylinder inside a glow stick) but it shed light (like a glow stick) on a subject that I have grown to see as having a lot of positive sides to it.  Not at all like having a broken heart…more like having a glow stick.

To the sky and back.

Love,

Mom

 

P.S.

To Justin,

I will always have a special place in my heart for you.  Thank you for intervening that day.  I will always be grateful that you and others like you are a part of our community for Allison.

Love,

Cathy

 

This entry was posted on January 22, 2012. 2 Comments

My Room

In trying to understand myself better and trying to be better able to explain myself to others, I try to observe my behavior and label it. I investigate the reasoning behind my behavior. What was I feeling? Why was I overwhelmed? One thing that I believe reflects my emotional and mental state is: my room.

When my life makes sense to me and is the way it should be, my room is perfect. Cleaning comes easily. Every time a mess is made, it’s cleaned up before I climb in bed. Everything has a place and everything is in it’s place. The surfaces of my room are dusted and shine (mostly hard wood). My bed is made and my clothes are folded and put away. My clothes for the next day are either physically or mentally lain out before I go to sleep. My books are all in place on my bookshelves except for the one I am currently reading, which resides on the nightstand beside my bed (that is, of course, when it is not in my hands). That is what my room is like when I’m content, happy, and calm. That is what my room is like when I feel emotionally in control. That is what my room is like when everything is going well in my life.

When my life does not make sense and is not going as it should be going, my room is messy. Every time I attempt to clean, I come close to a meltdown for no apparent reason or I just close my door and leave because I can’t focus on the cleaning at hand. Everything has a place, but everything is not in it’s place. The surfaces of my room are dusty and cluttered. My bed is unmade and my clean clothes are piled on my desk chair. In the mornings, I search through the pile of clothes for whatever looks clean and matches (even though I know that the clothes in that pile are clean). I have books piled on my desk, bookshelf, floor, and nightstand, even if I’m not reading all of them. That is what my room is like when I’m stressed, confused, and overwhelmed. That is what my room is like when I do not feel I am emotionally in control. That is what my room is like when everything in my life is not going well.

At the moment, my room is messy. Maybe it’s because I’m stressed. Maybe it’s because my routine was thrown off about 2 months ago and I’m still reeling from it. Maybe it’s the empty, pointlessness that my life seems to have become. Maybe I’m feeling a new emotion that I’ve yet to label with a word. Maybe my mind is just cluttered, disrupting my focus. Something is amiss in my life. I’ve yet to figure out what it is, but when I do, I’ll fix it right away. I don’t like having a messy room.

 

Searching,

Allie.

Life Without a Leg

The youth pastor at my church has an 8 year old boy. He doesn’t have both of his arms and legs. He only has about half of his left arm and leg. My grandma is blind. The world labels these two with the word “disabled.” Asperger Syndrome is technically a disability. The “normal” people of this world will tell them that they can’t do things; that they will never live a normal life.  These two people that are in my life prove the world wrong. They live normally. They are an inspiration to me as someone that has Asperger Syndrome.

The pastor’s kid wears a prosthetic leg. When I tell my friends about him, they say things like, “Poor little kid” or “How terrible.” My reaction is always to tell them, “Don’t feel sorry for him. Don’t treat him differently. That little boy runs around terrorizing people like every other little boy at church. He’s played soccer. He even takes his leg off and chases people around to hit them with it.” He recently did a 5K run with his parents. They did not run the entire way, of course, but it wasn’t easy. The youth pastor’s kid decided after a while that he no longer wanted to do this run. He wanted to quit. He used every excuse he could conjure up to get out of finishing this run. He tried to tell his dad that his leg hurt and he wanted to be carried the rest of the way. His dad observed him to make sure that he was telling the truth, and figured out pretty quickly that he had been lying. Their family, grudgingly, finished the run. His parents will not allow anyone to tell him that he can’t do something because he is “disabled.” He is a bright little kid. He plays rough with his cousins. He believes that he is invincible. He is whole. Because he doesn’t look physically complete doesn’t mean that he needs your pity.

My grandma was born blind. She was in “special” classes growing up. She married my grandpa and had 7 kids with him. She raised 5 boys and 2 girls. She and my grandpa run their own business. Most people that know her have no clue that she’s blind. Compared to what I can see, she see’s in blurred shapes. Or at least that’s how my mom explains it. That woman, however, has picked out some of the most beautiful clothing and jewelry I’ve ever seen. She recognizes me as soon as I walk in the door. She is completely amazing. She believes that she doesn’t have a disability. I believe her. She is invincible.

There are things that won’t come easily. There are things that I may never be able to understand. I will feel like I want to give up because it seems impossible. I will not, however, allow the fact that AS is a disability to hinder my life. I will do my best to not use AS as an excuse to quit or be lazy. My life will be full. I wont give up on learning how to better socialize. I will not give up. Yes, technically, I have a disability. No, I will not let that hold me back in life. You shouldn’t either.

 

Keep Moving,

Allie.

“Island of Misfit People”

Like every kid, I used to watch the same Christmas movies year after year. Every time I watched those Christmas movies, I felt that I was somehow like those toys on the Island of Misfit Toys. I didn’t fit in anywhere in the world, except with other misfits. This was not something that was made up in my mind. It was a truth in my life. The misfits were the only people I fit in with. They were the only ones that simply accepted me and my quirks.

There are many groups of people in school and in life. In school, there are always the jocks, the cheerleaders, popular people, ROTC members, the emo’s, the skaters, scenes kids, nerds/AP students, choir/band members, and drama geeks. These groups sometimes branch out into adult life. There is one group of people, however, that I didn’t mention. They are the people that do not fit in any of the groups listed above. This group is what I like to call “The Island of Misfit People. ”

I am a misfit toy. I’ve never been interested in sports, but I was a cheerleader once. I didn’t really fit in. I was friends with the popular people before they became popular. They always thought I was strange. I was in ROTC. Didn’t really work out for me. I’m too happy to be an emo. I’m to clumsy to be a skater. Scene kids, in my opinion, are similar to emo’s. I was always in the AP and Honors classes, but I was a horrible student and the nerds thought I was was weird. People in band thought my choice of the French Horn was strange. Almost as strange as me. In drama (outside of the classroom), I never did much more than back stage work. I wasn’t really dramatic enough to fit in with the drama geeks.

As you can see, I either attempted to fit in or knew that I wouldn’t fit in with pretty much every group. I did, however, fit in with the misfits. The other people that didn’t fit in with the groups. Granted, none of them had Asperger Syndrome like me, but they still didn’t fit in. They, because they had also felt the sting of rejection, were more open and accepting of others and their quirks.

Because I’ve seen how accepting and kind or how bitter and angry these people are, it makes me question the world. “Why can’t everyone be as understanding as the people that are rejected by them?” or “Can’t those people see how bitter life can become from being rejected?” The world can be cruel to those that are different. Bad things happen because of the worlds cruelty. People cut themselves, commit or attempt suicide, act in a promiscuous manner, drink, or do drugs to try to make the pain go away. Good things can come of it too. People can create organizations, become counselors, or motivational speakers to help those that are going through the same thing that they went through. As for me, I’m happy with being a misfit toy. I know that I’m unique. I know that I’m special. I know that my friends are my friends because they like who I am and not for shallow reasons. I’m happy that I can say that of myself too. My friends are my friends because I like them for who they are and not their looks, social status, or level of education.  Everyone is welcome on my island. Misfit or not.

 

Misfit and Happy,

Allie.