As many people know, I do see a psychiatrist regularly to manage my anxiety disorder. Today I had my regular check-up with my doctor. It went great, so great that I don't even have to see him again for 3-4 months as opposed to the typical 8 weeks. I was super proud that I have done so well this semester and to get this good news, but the day got even better.
Today my mother were her Embracing the Amazing sweater shirt (the sweat shirt I am wearing at the top of this blog except hers is red). There was a therapist that had passed by as we were checking out and it caught her eye. My mom pointed it out and said that it read "Embracing the Amazing". My mom told the therapist that I was on the autism spectrum. I began talking with her and telling her how I was hoping to get more stuff from the website we got this shirt from for Christmas. She replied,"better say that a little louder so your mom hears", as my mother was paying for my appointment. My mother overheard and chimed in. I told her what the therapist said.
As my mother continued to check me out, I told her how I was a proud aspie and that I had seen Dr. Hunter at the office a number of years ago and how much she had helped me. Her automatic response shocked me, but it wasn't unexpected to hear after I thought about it. Her response? "Help you to accept your autism?" I was flabbergasted. I said, "No, she helped me behaviorally, so I could be succeeding like I am today." There are so many things to learn from this situation.
The first thing is, the grass isn't always greener on the other side. In my situation, I don't wish to be on the other side. I do embrace my autism and I don't know what I would be like if I didn't have autism. I don't think I would be as dead set on my career path, I don't think I would have met some people, and I don't think I would be as happy. Yes, on some days autism can be a challenge and there are some days where I hate it, but I love it more days then I don't. I think this therapist was so used to seeing all these people who just hate their autism and don't want to embrace it. All I needed was some help socially and to manage my anxiety.
Another thing I learned was that making simple conversation with someone can change the course of your whole day. Simply holding this conversation with a complete stranger and sharing my story opened someone else's eyes. Simply recognizing that someone else is there sometimes can make all the difference. I think that being friendly towards this therapist, made her happy because I was showing that I cared about her, (in my own way), and she showed me that even though I was merely a stranger, she cared about me. I was also able to spread awareness that not everyone with autism is the same.
I think there are many more things that I could learn from this situation, but it was the sweetest conversation ever. It felt amazing to open someone's eyes who truly cared. It's amazing what a few words can do!
Dickinson Mental Health Charity Ball
Monday, December 16, 2013
Sunday, December 1, 2013
Are you my friend?
Last weekend, I was getting ready to head home for my Thanksgiving break. My parents typically come up to get me from school which is an hour and a half away. They take me back on monday for my afternoon classes then. Last weekend I decided to stay on campus because it would only be two days until I was home. Sometimes on occasion, I do get rides home from friends. This week, was on of those times that I needed one. For one the weather was going to be bad and for another reason, at some point my parents had to pick my grandmother up.
It was even five minutes after I had finally decided how I was getting home that an acquaintance decided to ask me for a ride home. I have class until 9:30 on Tuesday nights and we had to be out of the Dorm by 10 the next morning. This being the case, my father was going to pick me up at 8:30 on Wednesday morning. This also caused a major weather threat for our trip home.
Quick note: Sunday night I was rushing to write a five page in the library with a friend.
I woke up Monday morning, ready to conquer my day. The friend that helped me on my paper Sunday night, decided to meet up for breakfast and help me with my paper again. We decided to then head over to the main academic building to get work done and meet with our professors during their office hours. I had a few issues to clear up with Disability Services and I needed to touch base with my professor about my paper. I took care of the disability accommodations issues with some difficulty which already added to my overwhelming day of finishing school work up before break.
I finally met with my psychology professors and ended up sobbing to her to read my paper and give me advice on how to right the paper. I was completely lost. I took care of that, met up with my friend and got a text telling me that my classes were cancelled for Tuesday because of the weather. After busting my butt all morning and receiving that text, i wasn't a happy camper. I gave my dad a call to tell him that I was done with classes for the week and could be picked up anytime. He then told me he was in Pittsburgh for the day!!! I LOST it in the middle of the cafe. Thank goodness I had a bunch of friends surrounding me.
I finally headed home at 9:30 monday night because that was the earliest I could get home due to rides.
Tonight I got a text from the same friend wanting a ride home last week to take her back to school this week. A minute later, I got another text telling me she needed to know right away. No more than 10 minutes later, I find out I have a missed call from her. I asked my dad what I should do because I had already received the text. I needed to think about it and talk it over with my parents. Another two minutes goes by and I get a call from an "unknown number", I guess they don't call them restricted anymore. Fifteen minutes later, I get another two or three texts and they just keep coming. I finally get in my house after picking a friend up that I am having over for dinner and she calls again. Then more texts. I didn't know what to do. This person I can hardly call my friend, is pestering me for a ride to school tomorrow when her parents can take her today. My family has their own schedule.
Now to the point of this blog. This whole scenario begs the question of what a true friend is. Yes, this friend from school is someone who I see from time to time. She is someone who I am Facebook friends with. Sometimes, on occasion we text each other too, but that is rare. My parents love her too, other than the face that she is ALWAYS homesick. Is she my friend though? Is she just someone who I know?
Who are your real friends? We all have our friends and then we have our Facebook friends and I think sometimes they clash. Sometimes I don't think there is a clear black and white line which I know is hard to understand sometimes. For the longest time I had trouble with this and i still do, but I am working on it. I almost feel as if this scenario was put here from me to teach me that things aren't black and white.
I truly do love this person, but I'm not sure what it really means to be a friend yet. The only thing we do is car pool and her family has never offered me a ride until tonight. They suggested that they would take me home next weekend, but I don't want to go home next weekend. I want next weekend to focus and study for my finals in my dorm with little distraction. I think friends and acquaintances are both good, but sometimes lines aren't black and white and sometimes you need to help each other out. Who are your true friends?
It was even five minutes after I had finally decided how I was getting home that an acquaintance decided to ask me for a ride home. I have class until 9:30 on Tuesday nights and we had to be out of the Dorm by 10 the next morning. This being the case, my father was going to pick me up at 8:30 on Wednesday morning. This also caused a major weather threat for our trip home.
Quick note: Sunday night I was rushing to write a five page in the library with a friend.
I woke up Monday morning, ready to conquer my day. The friend that helped me on my paper Sunday night, decided to meet up for breakfast and help me with my paper again. We decided to then head over to the main academic building to get work done and meet with our professors during their office hours. I had a few issues to clear up with Disability Services and I needed to touch base with my professor about my paper. I took care of the disability accommodations issues with some difficulty which already added to my overwhelming day of finishing school work up before break.
I finally met with my psychology professors and ended up sobbing to her to read my paper and give me advice on how to right the paper. I was completely lost. I took care of that, met up with my friend and got a text telling me that my classes were cancelled for Tuesday because of the weather. After busting my butt all morning and receiving that text, i wasn't a happy camper. I gave my dad a call to tell him that I was done with classes for the week and could be picked up anytime. He then told me he was in Pittsburgh for the day!!! I LOST it in the middle of the cafe. Thank goodness I had a bunch of friends surrounding me.
I finally headed home at 9:30 monday night because that was the earliest I could get home due to rides.
Tonight I got a text from the same friend wanting a ride home last week to take her back to school this week. A minute later, I got another text telling me she needed to know right away. No more than 10 minutes later, I find out I have a missed call from her. I asked my dad what I should do because I had already received the text. I needed to think about it and talk it over with my parents. Another two minutes goes by and I get a call from an "unknown number", I guess they don't call them restricted anymore. Fifteen minutes later, I get another two or three texts and they just keep coming. I finally get in my house after picking a friend up that I am having over for dinner and she calls again. Then more texts. I didn't know what to do. This person I can hardly call my friend, is pestering me for a ride to school tomorrow when her parents can take her today. My family has their own schedule.
Now to the point of this blog. This whole scenario begs the question of what a true friend is. Yes, this friend from school is someone who I see from time to time. She is someone who I am Facebook friends with. Sometimes, on occasion we text each other too, but that is rare. My parents love her too, other than the face that she is ALWAYS homesick. Is she my friend though? Is she just someone who I know?
Who are your real friends? We all have our friends and then we have our Facebook friends and I think sometimes they clash. Sometimes I don't think there is a clear black and white line which I know is hard to understand sometimes. For the longest time I had trouble with this and i still do, but I am working on it. I almost feel as if this scenario was put here from me to teach me that things aren't black and white.
I truly do love this person, but I'm not sure what it really means to be a friend yet. The only thing we do is car pool and her family has never offered me a ride until tonight. They suggested that they would take me home next weekend, but I don't want to go home next weekend. I want next weekend to focus and study for my finals in my dorm with little distraction. I think friends and acquaintances are both good, but sometimes lines aren't black and white and sometimes you need to help each other out. Who are your true friends?
Tuesday, October 22, 2013
A Different Kind of Problem
Aspergers and anxiety disorders have their own set of problems. In girls these may present differently than they do in guys. Most girls may focus on a particular subject of interest, where guys may focus on a particular object. I have always focused, like many girls on a particular subject, that is anything medical. This is not the most common fixation or perseveration, but it was what I was dealt. This fascination has at times been helpful and at other times caused a great deal of stress, such as being scared of having a heart attack at the age of 14 just because my chest hurt. Now I know that this is a pure sign of anxiety and I almost never feel it anymore because I have control.
On Monday I went to see my Psychiatrist for my regularly schedule check up. As always he asked me how I was doing. I personally think I am doing absolutely fabulous, but that is because my thoughts are positive. One only looks at a mental illness as an illness, in simple terms where there is suffering on the individuals side of things. Yes there are other things like mal-adaptiveness and what not, but that just makes things more complex. So my problem now doesn't reside with anxiety because I am quite happy, but it deals with the intense focus on none other than objects now instead of interests.
Psychologists will always tell you that they can't change your fixation and that it is something you were born with. Over the past month or two I think my fixations have changed on their own. This is good because I don't sound like some nerd with a bunch of issues, but it can also be difficult because I am focusing on particular objects. This means I am focused on something less broad and it makes my autism a bit more pronounced because normal people don't fixate on objects. Well I am. So the good is I am not focusing on weird stuff about me, but the bad is my fixations are more obvious.
One obsession I have right now is with Mike from Monsters Inc. I am not even going to try an figure out how to spell his last name. When asked what I want to be for Halloween, I tell my parents Mike. My mom kind of rolls her eyes and says okay and my dad doesn't care because he likes to be creative. I noticed a while back that I was starting to focus a bit much on him, but I am noticing it more and more. It started at Wegman's where I saw a stuffed Mike that I thought I had to have. I then checked with myself and I had no idea. I then proceeded to land myself at Kmart with my mother at one point and I saw a had that had Mike's eyeball on it as if it were a Mike had. I put it on, had my mom take a picture of it, and asked if she would by it for me. Once again I had to check in with myself and say I already have plenty of hats, some much more well made. My mother said Christmas was coming, I gave a little frown and we moved on. To this day I am still focused on Mike to an extent where my mother who is acutely aware of my eccentricities, is aware. I think we have found the culprit of this problem.
This past summer we had to do quite a bit of shopping. I absolutely love pillows and always have. I also needed some decorative stuff to spruce up my dorm room. My mother and I chose a round green pillow and a rectangular purple pillow. Your probably already catching on. We totally should have gotten the round one in purple and the green rectangular. Anyway, the day I moved in, my mother made my bed and through the pillows on my bed. My dad, with his creative mind decided to pick the green round pillow up, throw it in my face and scream Mike Wizowsky. It clicked then and there and hasn't left, leaving a hopefully temporary fixation with this amusing character from a disney movie.
If that weren't enough, I now have a new obsession. I am fixated beyond belief with the new Rainbow Loom. I would totally have one now if it weren't for the fact that our family has a rule that you can't get anything new between October and Christmas. Yippeee! :( This weekend I went home and I had the opportunity to hang out with some old friends. The one friend I met up with had a Rainbow Loom. I tried it out, watched some videos and fell in love. So this weekend, I'm pretty sure the only thin that my mother remembers coming out of my mouth was The Little Couple and Rainbow Loom. How many times did I say Rainbow Loom? Enough times to drive my mother to the brink of sanity. Now I get to come back to school and talk about the Rainbow Loom for the next 8 weeks until I finally go home and hopefully get it for Christmas.
Now these things haven't harmed me and my anxiety. These fixations unlike most, have not caused distress, but they have made things awkward with others. I don't even know how popular said rainbow loom is, but at this time I don't care. I never thought that objects would turn into fixations, but currently they are and actually much more pleasant because they are positive things, not death and medical complications.
On Monday I went to see my Psychiatrist for my regularly schedule check up. As always he asked me how I was doing. I personally think I am doing absolutely fabulous, but that is because my thoughts are positive. One only looks at a mental illness as an illness, in simple terms where there is suffering on the individuals side of things. Yes there are other things like mal-adaptiveness and what not, but that just makes things more complex. So my problem now doesn't reside with anxiety because I am quite happy, but it deals with the intense focus on none other than objects now instead of interests.
Psychologists will always tell you that they can't change your fixation and that it is something you were born with. Over the past month or two I think my fixations have changed on their own. This is good because I don't sound like some nerd with a bunch of issues, but it can also be difficult because I am focusing on particular objects. This means I am focused on something less broad and it makes my autism a bit more pronounced because normal people don't fixate on objects. Well I am. So the good is I am not focusing on weird stuff about me, but the bad is my fixations are more obvious.
One obsession I have right now is with Mike from Monsters Inc. I am not even going to try an figure out how to spell his last name. When asked what I want to be for Halloween, I tell my parents Mike. My mom kind of rolls her eyes and says okay and my dad doesn't care because he likes to be creative. I noticed a while back that I was starting to focus a bit much on him, but I am noticing it more and more. It started at Wegman's where I saw a stuffed Mike that I thought I had to have. I then checked with myself and I had no idea. I then proceeded to land myself at Kmart with my mother at one point and I saw a had that had Mike's eyeball on it as if it were a Mike had. I put it on, had my mom take a picture of it, and asked if she would by it for me. Once again I had to check in with myself and say I already have plenty of hats, some much more well made. My mother said Christmas was coming, I gave a little frown and we moved on. To this day I am still focused on Mike to an extent where my mother who is acutely aware of my eccentricities, is aware. I think we have found the culprit of this problem.
This past summer we had to do quite a bit of shopping. I absolutely love pillows and always have. I also needed some decorative stuff to spruce up my dorm room. My mother and I chose a round green pillow and a rectangular purple pillow. Your probably already catching on. We totally should have gotten the round one in purple and the green rectangular. Anyway, the day I moved in, my mother made my bed and through the pillows on my bed. My dad, with his creative mind decided to pick the green round pillow up, throw it in my face and scream Mike Wizowsky. It clicked then and there and hasn't left, leaving a hopefully temporary fixation with this amusing character from a disney movie.
If that weren't enough, I now have a new obsession. I am fixated beyond belief with the new Rainbow Loom. I would totally have one now if it weren't for the fact that our family has a rule that you can't get anything new between October and Christmas. Yippeee! :( This weekend I went home and I had the opportunity to hang out with some old friends. The one friend I met up with had a Rainbow Loom. I tried it out, watched some videos and fell in love. So this weekend, I'm pretty sure the only thin that my mother remembers coming out of my mouth was The Little Couple and Rainbow Loom. How many times did I say Rainbow Loom? Enough times to drive my mother to the brink of sanity. Now I get to come back to school and talk about the Rainbow Loom for the next 8 weeks until I finally go home and hopefully get it for Christmas.
Now these things haven't harmed me and my anxiety. These fixations unlike most, have not caused distress, but they have made things awkward with others. I don't even know how popular said rainbow loom is, but at this time I don't care. I never thought that objects would turn into fixations, but currently they are and actually much more pleasant because they are positive things, not death and medical complications.
Monday, October 14, 2013
Autistic!
I am a strong woman, don't get me wrong, but there are some things that really upset me. Anything that hurts my family or anyone that I care about, including myself, really kills me. I do have to say that I have absolutely had enough with some of the stuff on campus right now. Penn College is a great school and I care deeply about it, but there are some people just like anywhere you go who are absolutely rude beyond belief. The last several days I haven't personally had to deal with them, but I have overheard numerous conversations that have really hurt me.
At my dorm, we have pods. Approximately nine students live in each pod, but we are more than welcome to have friends over during the day. Quiet hour starts at eleven and our doors lock at ten. Typically my pod has others in it until about eleven, sometimes later. That's okay as long as they are quiet. Last night there were some other students in our pod that were great and some that were not so great. Since most people had their doors open until about eleven, you were able to hear most conversations; especially since the guys can be loud.
We also have common areas with televisions and couches. Sometimes I like to escape to my room so I don't have to socialize with a bunch of people. I can have some respect and privacy. Lately that respect has been completely lost in the pod. The men who I have been trying to escape from in the common area because of foul language have been in our pod with their girlfriends lately and its really getting to me. For a while they just used the F word which irritated me. Then it just got worse from there.
Eventually they started using the R word, retarded. A few years back there was a campaign started to end the R word because it was offensive. Now it isn't even a legal term and those who are mentally challenged are now considered intellectually disabled. Last night, not only did I hear retarded several times and the F word numerous times, but I heard Autistic numerous times. The word Autistic is not a bad word, but when it is used inappropriately it can be extremely hurtful.
Person first language has always been a big part of my life. You don't say they are autistic, you say they are an individual who just so happens to suffer from Autism. Well that hasn't ever really offended me. Thats how tough I am, but even worse happened last night. As I sat in my bedroom last night and listened to the conversations around me I heard comments such as, "Your acting so Autistic" or " That's so autistic of you". In cooperation with these words they continued to use the F word, "Your acting Fucking Autistic". "What the fuck is wrong with you, thats so autistic". Needless to say I am extremely upset even today and so is my mother. My mom has a mighty tough skin and she built a tough skin for me too, but she is even hurt. This is a new problem and a serious problem and something needs to be done about it.
It heard so bad last night. I ended up shedding a few tears and talking to my mom. I wanted so badly to go over and say, "who said I am not autistic" or someone in this pod right now could be autistic. Something has got to happen and happen fast!!! :(
At my dorm, we have pods. Approximately nine students live in each pod, but we are more than welcome to have friends over during the day. Quiet hour starts at eleven and our doors lock at ten. Typically my pod has others in it until about eleven, sometimes later. That's okay as long as they are quiet. Last night there were some other students in our pod that were great and some that were not so great. Since most people had their doors open until about eleven, you were able to hear most conversations; especially since the guys can be loud.
We also have common areas with televisions and couches. Sometimes I like to escape to my room so I don't have to socialize with a bunch of people. I can have some respect and privacy. Lately that respect has been completely lost in the pod. The men who I have been trying to escape from in the common area because of foul language have been in our pod with their girlfriends lately and its really getting to me. For a while they just used the F word which irritated me. Then it just got worse from there.
Eventually they started using the R word, retarded. A few years back there was a campaign started to end the R word because it was offensive. Now it isn't even a legal term and those who are mentally challenged are now considered intellectually disabled. Last night, not only did I hear retarded several times and the F word numerous times, but I heard Autistic numerous times. The word Autistic is not a bad word, but when it is used inappropriately it can be extremely hurtful.
Person first language has always been a big part of my life. You don't say they are autistic, you say they are an individual who just so happens to suffer from Autism. Well that hasn't ever really offended me. Thats how tough I am, but even worse happened last night. As I sat in my bedroom last night and listened to the conversations around me I heard comments such as, "Your acting so Autistic" or " That's so autistic of you". In cooperation with these words they continued to use the F word, "Your acting Fucking Autistic". "What the fuck is wrong with you, thats so autistic". Needless to say I am extremely upset even today and so is my mother. My mom has a mighty tough skin and she built a tough skin for me too, but she is even hurt. This is a new problem and a serious problem and something needs to be done about it.
It heard so bad last night. I ended up shedding a few tears and talking to my mom. I wanted so badly to go over and say, "who said I am not autistic" or someone in this pod right now could be autistic. Something has got to happen and happen fast!!! :(
Monday, August 26, 2013
Hallelujah its not high school!!!
Today as I sat in my first year experience class, my teacher asked the class, "Who likes college better than High School?" My hand went up in a flash and to be perfectly honest I am not sure what all I have missed out on through the past two years. Granted I did have some maturing to do, but college is a whole different ball game man!!! The first week of school has come and gone and I am on to my second week, having had one class today.
I have definitely learned a lot already. Maybe I haven't dug to far into my academics, but college has been a social learning exercise!!! My first morning in college I went to the bathroom to take a shower. I don't have to share my bathroom with a whole hall, but I do have to share it with seven other girls. Well the showers have one curtain! ONE! Thats it!!!
As a child I went to an overnight summer camp that lasted a week. When you would go to take your shower, there were two curtains that covered the openings of a long cement structure. I was able to step foot in one curtain and change and then step into the shower behind another curtain. This gave some resemblance of privacy, although minimal, it was privacy. Well now I am in college and there is no privacy. I hop in the shower, throw my close out the side of the curtain while trying to keep myself hidden. I turn on the water just so happens to be really hot and get my shower. When the shower is over you fling open the curtain and there you are in the middle of the bathroom!!! Needless to say I am not quite happy about that. I don't have issues with body image, but I do have issues with privacy.
So you maybe saying, okay this whole college deal doesn't seem to exciting to her, but really it is. that was the only bad thing I have learned so far. On the upside, I have learned that girls are not NEARLY as BITCHY as they were in high school and that I am actually capable of making friends even if its with the geeks!!! When I am not hanging out with my clique...! Oh goodness, yes I just said clique, except I am not a mean one. Anyway when i am not hanging out with them I am normally hanging out with CRU which is an awesome club I found on campus for college christians! My RA is a member and invited me to come! I even found a great local church to attend that is very community based and small. I have found my niche, FINALLY!!! So yes I love college.
Most people complain about responsibility being a struggle. This hasn't been to hard on me yet, except for getting laundry done!!! Can you blame me, most college kids takes theirs home anyway. I was fortunate enough to have two years of college classes before I became a full time student, so I am a pro at this now. We even have a gym and a cafeteria in our dorm. Everything is right here.
Right now I have some many fun stories to tell, but I am going to leave you for tonight with this!!! NEVER let someone else tell you what you can and can't do. Try everything before giving up and you might get somewhere. My mother was told that I would live in a group home when I grew up and hear I am kicking ass in college!!! :)
I have definitely learned a lot already. Maybe I haven't dug to far into my academics, but college has been a social learning exercise!!! My first morning in college I went to the bathroom to take a shower. I don't have to share my bathroom with a whole hall, but I do have to share it with seven other girls. Well the showers have one curtain! ONE! Thats it!!!
As a child I went to an overnight summer camp that lasted a week. When you would go to take your shower, there were two curtains that covered the openings of a long cement structure. I was able to step foot in one curtain and change and then step into the shower behind another curtain. This gave some resemblance of privacy, although minimal, it was privacy. Well now I am in college and there is no privacy. I hop in the shower, throw my close out the side of the curtain while trying to keep myself hidden. I turn on the water just so happens to be really hot and get my shower. When the shower is over you fling open the curtain and there you are in the middle of the bathroom!!! Needless to say I am not quite happy about that. I don't have issues with body image, but I do have issues with privacy.
So you maybe saying, okay this whole college deal doesn't seem to exciting to her, but really it is. that was the only bad thing I have learned so far. On the upside, I have learned that girls are not NEARLY as BITCHY as they were in high school and that I am actually capable of making friends even if its with the geeks!!! When I am not hanging out with my clique...! Oh goodness, yes I just said clique, except I am not a mean one. Anyway when i am not hanging out with them I am normally hanging out with CRU which is an awesome club I found on campus for college christians! My RA is a member and invited me to come! I even found a great local church to attend that is very community based and small. I have found my niche, FINALLY!!! So yes I love college.
Most people complain about responsibility being a struggle. This hasn't been to hard on me yet, except for getting laundry done!!! Can you blame me, most college kids takes theirs home anyway. I was fortunate enough to have two years of college classes before I became a full time student, so I am a pro at this now. We even have a gym and a cafeteria in our dorm. Everything is right here.
Right now I have some many fun stories to tell, but I am going to leave you for tonight with this!!! NEVER let someone else tell you what you can and can't do. Try everything before giving up and you might get somewhere. My mother was told that I would live in a group home when I grew up and hear I am kicking ass in college!!! :)
Sunday, July 28, 2013
May The First Be With You!!!
Yeah, I know what your thinking! Star Wars!!! The fact is that its way deeper than star wars and to be frank, I am not a fan of science fiction, but this title fits. There is a first for everything and those first's that people have are important. The first of this particular event must stay with me. It was a happy first and it was a right of passage.
This past week I was at a Transition conference for youth with disabilities ranging in age from 16 to 28. There was a variety of disabilities including anything from a simple reading disability, to down syndrome and autism, to individuals in wheelchairs unable to speak. We were all on a level playing field and learned a lot.
This conference is like school and vacation put together. You step foot in the conference center and watch as wheelchairs zoom by you and kids walking through the hallways with their parents, clearly disabled, but yet so perfect in God's eyes. I walked in and I didn't feel different, but weight came off my chest because I was so similar to all the youth attending the conference. We all receive any of the accommodations that our IEP or our college has put in place for us. The playing field is equal. If we need enlarged print for somethings, thats okay.
The point of the conference was to educate families and caregivers about the transition process and resources that are available to individuals with disabilities. There are keynote's and breakout sessions. Along with this, there is a youth program that only 16 kids are accepted into per year. I was fortunate enough to be accepted this year and not only did I learn a whole lot of new things, but I think I met some pretty cool new people and even made a new friend.
During the day youth learned about resources and empowerment and when night hit, it was time to network and party. No, really during the day we got down to business on a youth level and when evening hit we had some really cool activities planned. One of which was a dance and the other was a scavenger hunt that I unfortunately missed out on due to an exam.
On the first day of the conference I came into our conference room and was a social butterfly right off the bat. The first person I met was another individual with Asperger syndrome which was so cool because it was also a girl. We hit it off right away and within 5 minutes I knew we were going to be best friends. We enjoyed the conference for the day and at the end decided we needed to set up a dinner date for us and our mothers. You know, Aspie mothers have to connect also. It just so happens, that not only did we connect, and did our parents connect, but we are identical aspies in our parents eyes as well. When my mother called into check with my dad, since she decided she would continue hanging out with my friends mother during the dance, she described our time as Simply J on overdrive or twice Simply J. We were quite obnoxious, but my mother enjoyed I made a new friend.
That was kind of a big first in and of its self. We actually seriously thought about having a sleepover the first night and thought it was a good idea since we networked so well, but our parents begged to differ. Honestly can you blame us, since it takes a lot to connect with us. If we connect with someone, we CONNECT!!! It ended up turning out for the good as I was a Zombie by the end of the dance, but still! Come On!!!
Well, today came the really big first and it will be with me for a very long time. I, for the first time ever was asked to go on vacation to the beach with this individual. I was invited to go to Ocean City New Jersey. Man was I shocked. I have always gone on vacation with my parents, but I have never been asked by a friend. Growing up I always heard stories about kids going on vacations with their friends and my brother even has, but for me this was a right of passage. To be asked to go on vacation with a peer just like me!!! Gasp!!! I was shocked.
Unfortunately this first had to be declined purely because I have a college class I am currently attending. I really didn't want to leave the class for too long because I need to get a good grade. This fall on the other hand, we are planning on getting together for a weekend. We may even hang out this coming summer. Right now, I need to keep my head up and look to the future. I need to see this friendship as something that is blossoming and good be a friend well into adulthood. Time will tell as distance hurts!!! No matter what we can communicate through facebook and phone!!! Thank God!!! :)
This past week I was at a Transition conference for youth with disabilities ranging in age from 16 to 28. There was a variety of disabilities including anything from a simple reading disability, to down syndrome and autism, to individuals in wheelchairs unable to speak. We were all on a level playing field and learned a lot.
This conference is like school and vacation put together. You step foot in the conference center and watch as wheelchairs zoom by you and kids walking through the hallways with their parents, clearly disabled, but yet so perfect in God's eyes. I walked in and I didn't feel different, but weight came off my chest because I was so similar to all the youth attending the conference. We all receive any of the accommodations that our IEP or our college has put in place for us. The playing field is equal. If we need enlarged print for somethings, thats okay.
The point of the conference was to educate families and caregivers about the transition process and resources that are available to individuals with disabilities. There are keynote's and breakout sessions. Along with this, there is a youth program that only 16 kids are accepted into per year. I was fortunate enough to be accepted this year and not only did I learn a whole lot of new things, but I think I met some pretty cool new people and even made a new friend.
During the day youth learned about resources and empowerment and when night hit, it was time to network and party. No, really during the day we got down to business on a youth level and when evening hit we had some really cool activities planned. One of which was a dance and the other was a scavenger hunt that I unfortunately missed out on due to an exam.
On the first day of the conference I came into our conference room and was a social butterfly right off the bat. The first person I met was another individual with Asperger syndrome which was so cool because it was also a girl. We hit it off right away and within 5 minutes I knew we were going to be best friends. We enjoyed the conference for the day and at the end decided we needed to set up a dinner date for us and our mothers. You know, Aspie mothers have to connect also. It just so happens, that not only did we connect, and did our parents connect, but we are identical aspies in our parents eyes as well. When my mother called into check with my dad, since she decided she would continue hanging out with my friends mother during the dance, she described our time as Simply J on overdrive or twice Simply J. We were quite obnoxious, but my mother enjoyed I made a new friend.
That was kind of a big first in and of its self. We actually seriously thought about having a sleepover the first night and thought it was a good idea since we networked so well, but our parents begged to differ. Honestly can you blame us, since it takes a lot to connect with us. If we connect with someone, we CONNECT!!! It ended up turning out for the good as I was a Zombie by the end of the dance, but still! Come On!!!
Well, today came the really big first and it will be with me for a very long time. I, for the first time ever was asked to go on vacation to the beach with this individual. I was invited to go to Ocean City New Jersey. Man was I shocked. I have always gone on vacation with my parents, but I have never been asked by a friend. Growing up I always heard stories about kids going on vacations with their friends and my brother even has, but for me this was a right of passage. To be asked to go on vacation with a peer just like me!!! Gasp!!! I was shocked.
Unfortunately this first had to be declined purely because I have a college class I am currently attending. I really didn't want to leave the class for too long because I need to get a good grade. This fall on the other hand, we are planning on getting together for a weekend. We may even hang out this coming summer. Right now, I need to keep my head up and look to the future. I need to see this friendship as something that is blossoming and good be a friend well into adulthood. Time will tell as distance hurts!!! No matter what we can communicate through facebook and phone!!! Thank God!!! :)
Tuesday, June 18, 2013
Another one bites the dust!!!
Another medication that is and I am not happy about it!!! This time, it wasn't how I felt, but what my medical records showed and the excessive weight I have gained in recent WEEKS!!! I have been struggling for a year with this roller coaster and I have about had it. I really don't want to experience the psychiatric symptoms I have experienced in the past.
Last week, I was at a camp for kids with traumatic brain injury. The week went great, but it was absolutely mentally and physically exhausting. I hardly had time to take care of myself, but it was so worth my time to give other kids a week of excitement. It was also really cool to connect with other counselors who had brain injuries since I had a stroke when I was born. It was also a place where I didn't have to worry about being embarrassed if I had a seizure. I was in a safe and understanding place. I was surrounded by medical professionals.
I came home from camp on Friday. We didn't get home until 7:30 or 8 o'clock that night because our car about died on us. It sounded like a motor boat the whole way home. Fortunately I think its okay now, but it was quite a ride with my mother who isn't a fan of driving long distance to begin with. She did really well though. Of course Saturday I had to wake up and go back to work. There was NO BREAK!!!
My week has continued with work Sunday, Monday, today and for the rest of the week. Fortunately I have Saturday and Sunday to myself. We're going camping for the day on Saturday, but hopefully Sunday I will get some sleep. In the mean time lets refer back to what I said in the first paragraph. Amidst this chaos, I am also weaning off my seizure medication and fatigue a serious trigger for my "seizures". I just haven't felt myself since I have arrived home from camp.
Right now I am just frustrated. There are so many decisions to make. I constantly have to monitor side affects now. I thought the side affects that were important would be way more obvious, but they are more subtle. I have to pay attention to which side affects I'm going to deal with too. I'm not going to lay in bed all night with no sleep and be manic during the day. I'm also not going to get fatter than I already am. I also have to really think about whether its worth being on medication, but my neurologist seems to think its vital. My mother and I disagree. For some reason all my doctors act as if I could have some huge grand mal any time even though I haven't had one in ten years and they don't know how frequent the seizures are. I beg to differ and they only happen once or twice a year.
The conclusion to this is that I will be starting on a new medication two weeks before I move away to college. I didn't start acting giddy until a week into my Lamictal trial. My attention span was gone by week two and things continued through week six or seven. There is no way we are going to know the side affects until after school starts. I feel insecure about leaving home unstable, but I have to do it. I wasn't able to function in the fall and if it were for understanding boss' I would've been jobless by now. Here's to a good transition to a new medication and college!!!
Last week, I was at a camp for kids with traumatic brain injury. The week went great, but it was absolutely mentally and physically exhausting. I hardly had time to take care of myself, but it was so worth my time to give other kids a week of excitement. It was also really cool to connect with other counselors who had brain injuries since I had a stroke when I was born. It was also a place where I didn't have to worry about being embarrassed if I had a seizure. I was in a safe and understanding place. I was surrounded by medical professionals.
I came home from camp on Friday. We didn't get home until 7:30 or 8 o'clock that night because our car about died on us. It sounded like a motor boat the whole way home. Fortunately I think its okay now, but it was quite a ride with my mother who isn't a fan of driving long distance to begin with. She did really well though. Of course Saturday I had to wake up and go back to work. There was NO BREAK!!!
My week has continued with work Sunday, Monday, today and for the rest of the week. Fortunately I have Saturday and Sunday to myself. We're going camping for the day on Saturday, but hopefully Sunday I will get some sleep. In the mean time lets refer back to what I said in the first paragraph. Amidst this chaos, I am also weaning off my seizure medication and fatigue a serious trigger for my "seizures". I just haven't felt myself since I have arrived home from camp.
Right now I am just frustrated. There are so many decisions to make. I constantly have to monitor side affects now. I thought the side affects that were important would be way more obvious, but they are more subtle. I have to pay attention to which side affects I'm going to deal with too. I'm not going to lay in bed all night with no sleep and be manic during the day. I'm also not going to get fatter than I already am. I also have to really think about whether its worth being on medication, but my neurologist seems to think its vital. My mother and I disagree. For some reason all my doctors act as if I could have some huge grand mal any time even though I haven't had one in ten years and they don't know how frequent the seizures are. I beg to differ and they only happen once or twice a year.
The conclusion to this is that I will be starting on a new medication two weeks before I move away to college. I didn't start acting giddy until a week into my Lamictal trial. My attention span was gone by week two and things continued through week six or seven. There is no way we are going to know the side affects until after school starts. I feel insecure about leaving home unstable, but I have to do it. I wasn't able to function in the fall and if it were for understanding boss' I would've been jobless by now. Here's to a good transition to a new medication and college!!!
Sunday, May 12, 2013
Defining Happiness
"Do I laugh more than most people", I asked my mother a couple days ago. We were sitting in the car on our way home from shopping. It was a really gloomy day and I felt kind of down, but I was giggling. My mom told me that she thought I did and that I was happier than most people, but I don't quite get that. I mean I have Aspergers, anxiety, vision impairments, seizures and so many other issues that I have to deal with. How could I be happier than others? I can think of other people that I know who have said the same thing, but I feel the same about them. So really do we know the true meaning of happiness?
I've always gotten my mom's jokes and we are close friends. We may have had our struggles through my teenage years, but now we can count on each other to be there for everything. Just tonight we were sitting in the car next to each other holding hands. The simple feeling of touch from a loved one is so powerful. When I asked the original question, this is what my mom told me. I always laugh at her jokes. I feel like I laugh at her jokes, but does that show what I am really feeling on the inside.
As human beings we all have our struggles and we develop coping skills. I personally have had to battle an anxiety disorder over the years and I have found ways to cope with it. Anxiety brings stress, but I guess I am a happy person. One thing I can say is that I am not a sad person. The only time I'm really sad is when its gloomy outside for days. That means I was pretty gloomy on Sunday because it was awful out.
I wasn't diagnosed with Aspergers until I was sixteen years old. I was going through a rough time with huge meltdowns. My parents decided they needed to meet with my psychologist by themselves and they did. During that appointment, my psychologist brought up aspergers as in the past she didn't think I had it. We went through the diagnostic process and I do have it. The one statement that always stands out though is that she said yes, she has aspergers, but she's a happy aspie. I am happy, but am I really happier than others?
Those were questions I have always had. I feel like I am happier than some people, but others are still happier than me. Yesterday we were purchasing some items at JCpenny's and Mario and Luigi from all the nintendo games casually walked in the store. I started cracking up as that was the funniest thing I have ever seen. Mario and Luigi in JCPenny's Of course, I still have not learned to not interrupt so I interrupted my mother when she was in the middle of a transaction to show her. My mother and the cashier thought I was crazy. I'm sure! Our JCPenny's is split into several sections and its east to walk a circle around it. Mario and Luigi finally came back around and I was able to show my mother and prove to everyone that I wasn't seeing anything. I was so shocked that out of my pure dork-side I asked to get my picture taken with them. They obliged and we got a picture. I was happy and giggly. That picture made my day and automatically went to facebook!!!
After the Mario and Luigi incident I have to take a look at my personal situation again and realize that maybe I am happier than most. Yes, I have struggles, but we all do. My struggles are just labelled which isn't always a good thing. I unlike many am able to look at the little things in life and laugh at them. Others it may take more. I'm not suggesting that my mother isn't a happy person, but she would never get her picture taken with them in a million years or put on a burger king crown and act like a kid even though she is an adult when she is with me and my1cent! Its just an example.
Maybe happiness isn't black and white, but maybe its big and small. Maybe happiness can be smaller than I see it. I saw happiness as a cheerful voice and laughter, but maybe happiness is just the pure joys you get out of life. The little things. Let me tell you I was bored to death at the mall, but I'm pretty sure Mario and Luigi made my day!!! Make the small things count!!!
I've always gotten my mom's jokes and we are close friends. We may have had our struggles through my teenage years, but now we can count on each other to be there for everything. Just tonight we were sitting in the car next to each other holding hands. The simple feeling of touch from a loved one is so powerful. When I asked the original question, this is what my mom told me. I always laugh at her jokes. I feel like I laugh at her jokes, but does that show what I am really feeling on the inside.
As human beings we all have our struggles and we develop coping skills. I personally have had to battle an anxiety disorder over the years and I have found ways to cope with it. Anxiety brings stress, but I guess I am a happy person. One thing I can say is that I am not a sad person. The only time I'm really sad is when its gloomy outside for days. That means I was pretty gloomy on Sunday because it was awful out.
I wasn't diagnosed with Aspergers until I was sixteen years old. I was going through a rough time with huge meltdowns. My parents decided they needed to meet with my psychologist by themselves and they did. During that appointment, my psychologist brought up aspergers as in the past she didn't think I had it. We went through the diagnostic process and I do have it. The one statement that always stands out though is that she said yes, she has aspergers, but she's a happy aspie. I am happy, but am I really happier than others?
Those were questions I have always had. I feel like I am happier than some people, but others are still happier than me. Yesterday we were purchasing some items at JCpenny's and Mario and Luigi from all the nintendo games casually walked in the store. I started cracking up as that was the funniest thing I have ever seen. Mario and Luigi in JCPenny's Of course, I still have not learned to not interrupt so I interrupted my mother when she was in the middle of a transaction to show her. My mother and the cashier thought I was crazy. I'm sure! Our JCPenny's is split into several sections and its east to walk a circle around it. Mario and Luigi finally came back around and I was able to show my mother and prove to everyone that I wasn't seeing anything. I was so shocked that out of my pure dork-side I asked to get my picture taken with them. They obliged and we got a picture. I was happy and giggly. That picture made my day and automatically went to facebook!!!
After the Mario and Luigi incident I have to take a look at my personal situation again and realize that maybe I am happier than most. Yes, I have struggles, but we all do. My struggles are just labelled which isn't always a good thing. I unlike many am able to look at the little things in life and laugh at them. Others it may take more. I'm not suggesting that my mother isn't a happy person, but she would never get her picture taken with them in a million years or put on a burger king crown and act like a kid even though she is an adult when she is with me and my1cent! Its just an example.
Maybe happiness isn't black and white, but maybe its big and small. Maybe happiness can be smaller than I see it. I saw happiness as a cheerful voice and laughter, but maybe happiness is just the pure joys you get out of life. The little things. Let me tell you I was bored to death at the mall, but I'm pretty sure Mario and Luigi made my day!!! Make the small things count!!!
Sunday, April 28, 2013
More braking bonds!!!
As many of you know, I have a lot ahead of me in the next couple of months. This week is finals week, which means studying my butt off. With that studying also comes time to say by to some friends. I may have to study but man, hanging out with friends is a total stress relief and it has done me well. This week have to say by to one friend who is near and dear to my heart. I met him on campus this year and we became fast friends.
It was only a couple months ago where Rick and I were sitting in a club meeting. I had been in the club since the beginning of the year, but rick was new. As we talked and got to know each other, we realized that we were very similar. We have the same personality, same sense of humor, and even somewhat of the same family lifestyle. He has a younger sister and I have a younger brother. We even feel the same on some religious views.
My favorite part of our friendship was the laughs we had and the stories we told. We even had some pretty great inside jokes that made it really awkward to talk about in front of grandma, but thats a different story. Rick wasn't just a friend though, he was a friend who came over for dinner every now and then. He had know place to go for easter so we fed him Easter dinner. That is, because our campus has no easter break.
I vividly remember acting giddy that I had a friend coming over for Easter. We had to pick Rick up from campus because he didn't have a car with him. My parents hadn't met him yet, but my parents trusted me. Thank god for facebook I was able to show my parents pictures of him and thats all that mattered.
As we sat at the kitchen table feasting on our easter meal, I remember sharing stories of our family and various other subjects. Rick would sit and listen to the stories just peeping in every once in a while. A great listener he was. After dinner was over, he helped us clear the table and then we played some games. I beat the crap out of him in Othello and I don't think he won a game of it, but he likes playing it and seeing me win. When we talk about hanging out he mentions getting beat in Othello and it makes me giggle.
Not only do we have the same humor, and interest in Othello, but we are both pet lovers. Rick loves dogs and alks about dogs, but really I'm sure inside somewhere he likes cats just as much. He says he's a dog person, but when he steps foot inside my house, you see his whole face light up when one of my cats greets him. Just today, we were distracted by our cats while playing games. The cats wanted to help so we gave them some love and attention. As Rick left he made sure to say bye to the cats and on our way back to his dorm, he got to tell me all about his dog.
As a child, I was always reminded that there is a huge difference between friends and acquaintances and that I didn't really have any real friends. Most of my friends had separate lives and saw me when they had the chance. My parents would tell me that a real friend is someone who you talk to every day when you get home from school or in class. You called each other on the phone. Okay, this was a few years back after all.
Okay, I am not trying to be romantic here. Rick was a friend, not just a friend, but someone who I could talk too. He wasn't a boyfriend,but he wasn't an acquaintance either. He was somewhere in between and to be perfectly honest, neither of us were or are interested in the dating option. Right now were focused on college and friendships, not relationships, but I think Rick has taught me a huge lesson. Not everyone you meet is going to be your best friend and not everyone you meet is going to be your acquaintance. Sometimes there just right there in the middle where you need them to be. Rick has also taught me what it really means to have a friend. Friends have there own schedules, but if they really care, they will fit you into theres and not worry about how many times simply J is going to call them in one hour. lol I had a bad habit of this because he never answers his cell. Maybe thats because its always dead. (clear throat here) Needless to say, Rick has taught me a lot about life. More than I can put in words here or than I feel I can share without his permission. He has taught me that overcoming obstacles is possible and not worrying about the little things is a must. Curiosity is a good thing, but worrying is not. Thank you rick for all you have taught me in these few short months!!!
It was only a couple months ago where Rick and I were sitting in a club meeting. I had been in the club since the beginning of the year, but rick was new. As we talked and got to know each other, we realized that we were very similar. We have the same personality, same sense of humor, and even somewhat of the same family lifestyle. He has a younger sister and I have a younger brother. We even feel the same on some religious views.
My favorite part of our friendship was the laughs we had and the stories we told. We even had some pretty great inside jokes that made it really awkward to talk about in front of grandma, but thats a different story. Rick wasn't just a friend though, he was a friend who came over for dinner every now and then. He had know place to go for easter so we fed him Easter dinner. That is, because our campus has no easter break.
I vividly remember acting giddy that I had a friend coming over for Easter. We had to pick Rick up from campus because he didn't have a car with him. My parents hadn't met him yet, but my parents trusted me. Thank god for facebook I was able to show my parents pictures of him and thats all that mattered.
As we sat at the kitchen table feasting on our easter meal, I remember sharing stories of our family and various other subjects. Rick would sit and listen to the stories just peeping in every once in a while. A great listener he was. After dinner was over, he helped us clear the table and then we played some games. I beat the crap out of him in Othello and I don't think he won a game of it, but he likes playing it and seeing me win. When we talk about hanging out he mentions getting beat in Othello and it makes me giggle.
Not only do we have the same humor, and interest in Othello, but we are both pet lovers. Rick loves dogs and alks about dogs, but really I'm sure inside somewhere he likes cats just as much. He says he's a dog person, but when he steps foot inside my house, you see his whole face light up when one of my cats greets him. Just today, we were distracted by our cats while playing games. The cats wanted to help so we gave them some love and attention. As Rick left he made sure to say bye to the cats and on our way back to his dorm, he got to tell me all about his dog.
As a child, I was always reminded that there is a huge difference between friends and acquaintances and that I didn't really have any real friends. Most of my friends had separate lives and saw me when they had the chance. My parents would tell me that a real friend is someone who you talk to every day when you get home from school or in class. You called each other on the phone. Okay, this was a few years back after all.
Okay, I am not trying to be romantic here. Rick was a friend, not just a friend, but someone who I could talk too. He wasn't a boyfriend,but he wasn't an acquaintance either. He was somewhere in between and to be perfectly honest, neither of us were or are interested in the dating option. Right now were focused on college and friendships, not relationships, but I think Rick has taught me a huge lesson. Not everyone you meet is going to be your best friend and not everyone you meet is going to be your acquaintance. Sometimes there just right there in the middle where you need them to be. Rick has also taught me what it really means to have a friend. Friends have there own schedules, but if they really care, they will fit you into theres and not worry about how many times simply J is going to call them in one hour. lol I had a bad habit of this because he never answers his cell. Maybe thats because its always dead. (clear throat here) Needless to say, Rick has taught me a lot about life. More than I can put in words here or than I feel I can share without his permission. He has taught me that overcoming obstacles is possible and not worrying about the little things is a must. Curiosity is a good thing, but worrying is not. Thank you rick for all you have taught me in these few short months!!!
Wednesday, April 24, 2013
The words your not supposed to say
People always sa that individuals on the spectrum aren't very social. Well, if you know me I am social and I am loud. I am very loud and sometimes thats not such a great idea. I'm the one who you can here in wal-mart even though I'm ten aisles down from you. My parents have honestly threatened to send me to a speech therapist if I would lower my voice and modulate it. Well, that never happened and I am still loud. I am also the one who when my parents have to tell a guest before they come to our house that I have aspergers, just tell them that I don't seem really different, but I'm just really loud. Well this week I have had to keep quiet!!!
I have already counted three times that I have had to keep my mouth shut. Sometimes its easier and sometimes its harder. The first one was when I gave my notice at my job last week. I didn't abruptly just quit my job and say heck with it. There was a lot that I took into consideration and it was almost as if I was naturally lead in that direction. I knew I would leave eventually, but I didn't know when. Well, God has his plans and he figuratively told me or let me know that now is the time, by putting other things ahead of me.
I gave my notice at my job and tried to stay quiet about it. I think I may have told a few staff members who I trusted just because I had to say something, but I hadn't planned on letting everyone know. There was no reason for them not to know, but there was no reason for them to know. I think the first thought to come to mind was that I didn't want my clients to know. I didn't know how to tell my clients who giggle when they come in the door and see me. When I ask them why they are giggling and tell me its because I am there. I didn't know how to tell someone that doesn't process information the same way you or I do. I didn't know how to tell someone that doesn't transition well.
Fortunately or unfortunately I came into work and the secret was clearly let out of the box somehow. I just went about my day and then one of my coworkers was talking to a client about me leaving. The secret was out and I was a little upset. I knew I would have to break the news somehow, but I didn't expect it to happen like that. I would have much preferred I talked to my boss about how to address our clients. In the end it worked out okay though.
The second thing I still can't really say much about other than I really need to keep my lips zipped. We have a small parking lot at work that our clients use to get clients in and out of the center. At that entrance there is a ramp and a cement patio in which you can easily wheel wheelchairs. Unfortunately, people were moving into a house nest door to us on this given day. That meant that they had an eighteen wheeler parked in our parking lot. You would think maybe a big box truck, but no this was an eighteen wheeler. I'll post a picture and video at the end. Needless to say we had to do some stuff to keep everyone safe, which probably wasn't the smartest thing to do on a normal basis, but in this situation was a must. Safety comes before rules and lets keep it at that. But right now I can laugh at the crazy stuff we had to do.
Lastly I must state that my math teacher isn't allowed to give out extra credit, but today we had a quiz that we could gain points on beyond our 100 percent score. We just couldn't call then extra credit. Now knowing me, I would go around telling everyone I got extra credit in math, but shh its a secret so I didn't.
Overall, I am just saying that its so hard to keep my mouth shut and sometimes I need to monitor what I say. It could be as simple as not telling someone there shirt is ugly or as complex as keeping people safe. There are just some things in life that will be our little secret!!!
I have already counted three times that I have had to keep my mouth shut. Sometimes its easier and sometimes its harder. The first one was when I gave my notice at my job last week. I didn't abruptly just quit my job and say heck with it. There was a lot that I took into consideration and it was almost as if I was naturally lead in that direction. I knew I would leave eventually, but I didn't know when. Well, God has his plans and he figuratively told me or let me know that now is the time, by putting other things ahead of me.
I gave my notice at my job and tried to stay quiet about it. I think I may have told a few staff members who I trusted just because I had to say something, but I hadn't planned on letting everyone know. There was no reason for them not to know, but there was no reason for them to know. I think the first thought to come to mind was that I didn't want my clients to know. I didn't know how to tell my clients who giggle when they come in the door and see me. When I ask them why they are giggling and tell me its because I am there. I didn't know how to tell someone that doesn't process information the same way you or I do. I didn't know how to tell someone that doesn't transition well.
Fortunately or unfortunately I came into work and the secret was clearly let out of the box somehow. I just went about my day and then one of my coworkers was talking to a client about me leaving. The secret was out and I was a little upset. I knew I would have to break the news somehow, but I didn't expect it to happen like that. I would have much preferred I talked to my boss about how to address our clients. In the end it worked out okay though.
The second thing I still can't really say much about other than I really need to keep my lips zipped. We have a small parking lot at work that our clients use to get clients in and out of the center. At that entrance there is a ramp and a cement patio in which you can easily wheel wheelchairs. Unfortunately, people were moving into a house nest door to us on this given day. That meant that they had an eighteen wheeler parked in our parking lot. You would think maybe a big box truck, but no this was an eighteen wheeler. I'll post a picture and video at the end. Needless to say we had to do some stuff to keep everyone safe, which probably wasn't the smartest thing to do on a normal basis, but in this situation was a must. Safety comes before rules and lets keep it at that. But right now I can laugh at the crazy stuff we had to do.
Lastly I must state that my math teacher isn't allowed to give out extra credit, but today we had a quiz that we could gain points on beyond our 100 percent score. We just couldn't call then extra credit. Now knowing me, I would go around telling everyone I got extra credit in math, but shh its a secret so I didn't.
Overall, I am just saying that its so hard to keep my mouth shut and sometimes I need to monitor what I say. It could be as simple as not telling someone there shirt is ugly or as complex as keeping people safe. There are just some things in life that will be our little secret!!!
Tuesday, April 23, 2013
Good Bye, Farewell, Until We Meet Again!!!
About five years, I was stepping off my bus and headed towards the front door of my house. I saw a crazy car sitting in my driveway that looked as crazy as that car you see in the end of Daddy Daycare. I walked in the house, shouted my typical hello for my mother to yell back from down the stairs. I put my backpack down, took my coat off and walked into what was once our toy room. In that toy room was not just toys, but a strange looking man, sitting on my floor and playing with my brother's to motorcycles. This man was not a child, but a full grown man playing with my brothers toys in my toy room.
"Holy crap!!! Who is this man?", I thought to myself. I ran down the stairs and asked my mother. She had two wonderful, but unfamiliar middle-aged women sitting with her. I asked my mom what was going on. She then declared that the man playing in my toy room was a young man with down syndrome who was the brother of her client. "Okay, they knew about him", I thought to myself. Thats a good step.
Shortly after they left, I talked to my mom about the clients. They owned and ran an adult daycare for adults with special needs. I had a light interest in working individuals with special needs, but I knew nothing. I had friends who had learning disabilities and some that were mentally challenged. I didn't know that people with Cerebral Palsy couldn't feed themselves all the time. I didn't know that just because your nonverbal, and wheelchair bound, doesn't mean your dumb. I didn't know that adults were diapers and I didn't know a whole lot of other things. I didn't even know that people with disabilities couldn't have jobs.
My mother suggested I volunteer at this place. At this time I hadn't really practiced the skill of calling people to inquire about stuff. I only called people I knew. Okay, I met these ladies once for like five minutes and I thought they were sisters. I did find some interest though and my mom handed me the phone number to call for volunteering and stood there to monitor my conversation.
I punched in the numbers and let the phone ring. A lady picked up on the other end. Her name was Lynn. I asked her about volunteering and asked her when I could come in. Before I was committed she told me that the place would be stinky because of dirty diapers and clients would cough on me when they were eating. "Great, I thought". I decided to give it a try because Lynn reassured me that I wouldn't have to do any of that stuff. I would just play with the clients and be a watchful eye.
I walked in on my first day of volunteering and I was greeted by Lynn, a client and the two cats. I though the center would be a building, but it was actually built into a store front with crafts celebrating the holidays hanging on the windows. That might have been coloring or whatever else they had been doing. Lynn introduced me to the client she was working with and then showed me the rest of the clients. We walked towards the back and past tables full of clients. Some sitting in chairs and others in wheelchairs. The first client she brought me by was a 22 year old young woman who was supposedly the social light of the party. She was nonverbal and in a wheelchair. How could she be the social light? She couldn't talk. I soon learned that she could talk, using a communication device.
We moved on through as Lynn gave me the tour. I saw a client sitting in a wheel chair the the biggest curls ever. She was clapping her hands, laughing, and rocking back and forth. She wasn't in there. She was severely disabled. As the day went on, I figured out things I could do with a variety of clients. This client that I walked in to that was clapping and rocking could actually play ball. We would put a ball on her lap and she would throw it. It wasn't meaningful play, but it was play.
From this day forward, with all of these experiences, I had my eyes opened very wide. I learned that every one has abilities not matter how small. I loved every moment there and I met lots of people. I ended up volunteering for about four years. We moved to a new center where we reside now. We are huge now. About two years ago I got hired though and it was the best thing that could've happened to me at the time.
I started the summer after graduation as a part time employee. I have worked there for two years now and I have learned so much, but sadly the time is coming to an end. My last day is going to be next Tuesday, because I feel the need to move on at this point. I am going off to college in the fall anyway and I found that this would be the best time. I have another summer job working with special needs again. I will be working with kids this time though and the job is closer to my home. I also have a boss that knows I have disabilities and has worked with my disabilities. She knows that I am not as emotionally mature as people my age and I think it will be a great fit, but we can't forget the stuff I learned over the years.
I have learned first and foremost that everyone deserves a chance. A chance at living and a chance of living outside of an institution. They deserve a chance to have an education and to reach there full potential. They deserve a chance to speak there opinion and to be social with others no matter how quiet or loud they are.
Secondly, we all have something to offer no matter how big or how small. If you can toss a ball, or see for the first time in your life. If you can run a motorized wheelchair or count your numbers. If you can bake or you can bead. If you can make a decision or even express an emotion, we all have talent and ability to some extent. We can all breathe and that is a skill. Don't take the little things for granted. Give others a chance and realize the potential no matter how small!!!
"Holy crap!!! Who is this man?", I thought to myself. I ran down the stairs and asked my mother. She had two wonderful, but unfamiliar middle-aged women sitting with her. I asked my mom what was going on. She then declared that the man playing in my toy room was a young man with down syndrome who was the brother of her client. "Okay, they knew about him", I thought to myself. Thats a good step.
Shortly after they left, I talked to my mom about the clients. They owned and ran an adult daycare for adults with special needs. I had a light interest in working individuals with special needs, but I knew nothing. I had friends who had learning disabilities and some that were mentally challenged. I didn't know that people with Cerebral Palsy couldn't feed themselves all the time. I didn't know that just because your nonverbal, and wheelchair bound, doesn't mean your dumb. I didn't know that adults were diapers and I didn't know a whole lot of other things. I didn't even know that people with disabilities couldn't have jobs.
My mother suggested I volunteer at this place. At this time I hadn't really practiced the skill of calling people to inquire about stuff. I only called people I knew. Okay, I met these ladies once for like five minutes and I thought they were sisters. I did find some interest though and my mom handed me the phone number to call for volunteering and stood there to monitor my conversation.
I punched in the numbers and let the phone ring. A lady picked up on the other end. Her name was Lynn. I asked her about volunteering and asked her when I could come in. Before I was committed she told me that the place would be stinky because of dirty diapers and clients would cough on me when they were eating. "Great, I thought". I decided to give it a try because Lynn reassured me that I wouldn't have to do any of that stuff. I would just play with the clients and be a watchful eye.
I walked in on my first day of volunteering and I was greeted by Lynn, a client and the two cats. I though the center would be a building, but it was actually built into a store front with crafts celebrating the holidays hanging on the windows. That might have been coloring or whatever else they had been doing. Lynn introduced me to the client she was working with and then showed me the rest of the clients. We walked towards the back and past tables full of clients. Some sitting in chairs and others in wheelchairs. The first client she brought me by was a 22 year old young woman who was supposedly the social light of the party. She was nonverbal and in a wheelchair. How could she be the social light? She couldn't talk. I soon learned that she could talk, using a communication device.
We moved on through as Lynn gave me the tour. I saw a client sitting in a wheel chair the the biggest curls ever. She was clapping her hands, laughing, and rocking back and forth. She wasn't in there. She was severely disabled. As the day went on, I figured out things I could do with a variety of clients. This client that I walked in to that was clapping and rocking could actually play ball. We would put a ball on her lap and she would throw it. It wasn't meaningful play, but it was play.
From this day forward, with all of these experiences, I had my eyes opened very wide. I learned that every one has abilities not matter how small. I loved every moment there and I met lots of people. I ended up volunteering for about four years. We moved to a new center where we reside now. We are huge now. About two years ago I got hired though and it was the best thing that could've happened to me at the time.
I started the summer after graduation as a part time employee. I have worked there for two years now and I have learned so much, but sadly the time is coming to an end. My last day is going to be next Tuesday, because I feel the need to move on at this point. I am going off to college in the fall anyway and I found that this would be the best time. I have another summer job working with special needs again. I will be working with kids this time though and the job is closer to my home. I also have a boss that knows I have disabilities and has worked with my disabilities. She knows that I am not as emotionally mature as people my age and I think it will be a great fit, but we can't forget the stuff I learned over the years.
I have learned first and foremost that everyone deserves a chance. A chance at living and a chance of living outside of an institution. They deserve a chance to have an education and to reach there full potential. They deserve a chance to speak there opinion and to be social with others no matter how quiet or loud they are.
Secondly, we all have something to offer no matter how big or how small. If you can toss a ball, or see for the first time in your life. If you can run a motorized wheelchair or count your numbers. If you can bake or you can bead. If you can make a decision or even express an emotion, we all have talent and ability to some extent. We can all breathe and that is a skill. Don't take the little things for granted. Give others a chance and realize the potential no matter how small!!!
Monday, April 22, 2013
The time is coming to an end!!!
I was born and raised in the town I grew up in. Its a small town with a large University and its fairly safe unless you go downtown when its dark on the weekends. Thats where you'll find all the drunk college students and occasionally some violence. Our police force has a good handle on things downtown though.
I've only lived in two houses over the past twenty years and seventeen of those years I have had a younger brother by my side. In the fall I'll be attending college and my brother will be a senior in high school. Let's face it, we're getting old. My parents are now those parents who in time will say, "yes we have kids, but there all grown."
With that being said, hopefully my brother will be headed off to college while I'll be attending my second year even though we're three years apart. That means in the near future there will no longer be a little brother to come home to on the weekends, or play games with when he's in a good mood. No brother to explain to others that I'm quirky, but not different. No brother to protect me when others hurt me. No brother to protect me while my parents are out and its dark out. No brother to comfort me during a seizure if my parents aren't around. No brother to be there.
Its not a bad thing, but its a good thing that each of us our finding our ways into leading independent lives. As we do this though, I am realizing how much of an impact my brother has had on me. Just the other day, I brought home ice cream for him and he gave me a huge bear hug. Its ice cream for pete's sake. In all honesty, I don't think he sees the future, but only sees the present.
Obviously we'll always have each others backs, but we'll lead different lives under different roof's. Hopefully my brother will go onto college and move out on his own. He'll find a decent job, find a wife, get married and have kids. I'll hopefully go off to college, crossing my fingers be able to live on my own depending on where I can find a job and how much transportation holds me hostage and hopefully find the right man, but I haven't really kissed any frogs yet, so thats a far fetch.
The truth of the matter is that I don't think my brother and I are seeing eye to eye on things. My brother sees me coming home every weekend next year to see him and my parents and we'll live happily ever after. I see us moving out and on our own to follow our dreams and this may mean less contact and more passion for our careers and future families. We're leaving the next and flying where were taken. God only knows, maybe I'll have to live with my brother for transportation purposes, but my hope is that he is able to lead his only life and not worry about how well I'm taken care of. My dream is that I'll be able to take care of myself and follow my own dreams without too many burdens.
We must take the time we have together and cherish it before its gone. Time flies!!!
I've only lived in two houses over the past twenty years and seventeen of those years I have had a younger brother by my side. In the fall I'll be attending college and my brother will be a senior in high school. Let's face it, we're getting old. My parents are now those parents who in time will say, "yes we have kids, but there all grown."
With that being said, hopefully my brother will be headed off to college while I'll be attending my second year even though we're three years apart. That means in the near future there will no longer be a little brother to come home to on the weekends, or play games with when he's in a good mood. No brother to explain to others that I'm quirky, but not different. No brother to protect me when others hurt me. No brother to protect me while my parents are out and its dark out. No brother to comfort me during a seizure if my parents aren't around. No brother to be there.
Its not a bad thing, but its a good thing that each of us our finding our ways into leading independent lives. As we do this though, I am realizing how much of an impact my brother has had on me. Just the other day, I brought home ice cream for him and he gave me a huge bear hug. Its ice cream for pete's sake. In all honesty, I don't think he sees the future, but only sees the present.
Obviously we'll always have each others backs, but we'll lead different lives under different roof's. Hopefully my brother will go onto college and move out on his own. He'll find a decent job, find a wife, get married and have kids. I'll hopefully go off to college, crossing my fingers be able to live on my own depending on where I can find a job and how much transportation holds me hostage and hopefully find the right man, but I haven't really kissed any frogs yet, so thats a far fetch.
The truth of the matter is that I don't think my brother and I are seeing eye to eye on things. My brother sees me coming home every weekend next year to see him and my parents and we'll live happily ever after. I see us moving out and on our own to follow our dreams and this may mean less contact and more passion for our careers and future families. We're leaving the next and flying where were taken. God only knows, maybe I'll have to live with my brother for transportation purposes, but my hope is that he is able to lead his only life and not worry about how well I'm taken care of. My dream is that I'll be able to take care of myself and follow my own dreams without too many burdens.
We must take the time we have together and cherish it before its gone. Time flies!!!
Friday, April 19, 2013
With a good fight, comes a good day!!!
It all started last week! I had a TB test done which was followed by a vaccine! The vaccine doesn't have a lot of side affects other than fainting and I don't typically suffer from side affects. Well my body is also very different than most and acts like how it wants too ask. I have to be very careful to take enough medicine and not too much because my body is sensitive too. Therefore, I am on crazy medication dosages, such as having decimal point differences in my dosages. That being said this has been a really rough week in terms of how my medical conditions go.
I received the Gardasil shot last Thursday as in a week ago and this was followed by a migraine. That Friday I suffered another seizure, which was then followed by more migraines Monday, Tuesday and once again yesterday and some blood work. To say the least, this week has been one from H*** for me. It has been painful and scary. I have felt literally sick as the energy has been drained from my body, but today changed that.
I got the blood taken Tuesday, and heard back from the doc that same day. Up we go on the seizure medication and down we go on the energy level. With every problem you fix there is always another consequence. I am very happy that they are trying to control my seizures, but still!!! I'm not sure whats up with the Migraines, I came home last night and a friend came over. She was out by eight because I could no longer function and was in tears. Medicine didn't help and I was in bed by 8:30. Today I woke up great though.
I finally got to pick out a new pair of glasses, and if you have been following me on facebook you no how thats been going. I picked out a really cute pair of purple glasses that have glitter on them too! Along with the glasses I was also offered to volunteer during our special olympics and help people pick glasses out because my dr. office does a clinic then. I even get a special olympics shirt. This conversation was followed by some friendship related things.
There is a young girl in my area who supposedly has trouble with friends and also has some vision issues. The technician who works with me is going to try to get us in contact with each other and I am super excited about that!!! Hopefully I'll hear more details about this soon. My mother and I followed this witha trip to McDonald's to get a sweet tea of course.
After pushing through this week, it turned out happily ever after. I think there is a lesson to learn from this. There may be crap in your life that you have to deal with, but if you push through it there is always a light at the end of the tunnel. Obviously the tunnel may be longer for some or more gruesome for others, but it will be there. The tunnel may open and close on you again, but one must cherish the good moments in life and thats what I did today. It may have stormed and I may have had to drive through a riven today,but guess what I didn't have a migraine and I made good connections today. Tomorrow I may have to work my butt off scooping ice cream all day, but in the end I'm with my friends and I get to go see friends from out of town afterwards. Its not that I don't like work, I'm just trying tos how that out of all bad comes good as long as you let it.
I received the Gardasil shot last Thursday as in a week ago and this was followed by a migraine. That Friday I suffered another seizure, which was then followed by more migraines Monday, Tuesday and once again yesterday and some blood work. To say the least, this week has been one from H*** for me. It has been painful and scary. I have felt literally sick as the energy has been drained from my body, but today changed that.
I got the blood taken Tuesday, and heard back from the doc that same day. Up we go on the seizure medication and down we go on the energy level. With every problem you fix there is always another consequence. I am very happy that they are trying to control my seizures, but still!!! I'm not sure whats up with the Migraines, I came home last night and a friend came over. She was out by eight because I could no longer function and was in tears. Medicine didn't help and I was in bed by 8:30. Today I woke up great though.
I finally got to pick out a new pair of glasses, and if you have been following me on facebook you no how thats been going. I picked out a really cute pair of purple glasses that have glitter on them too! Along with the glasses I was also offered to volunteer during our special olympics and help people pick glasses out because my dr. office does a clinic then. I even get a special olympics shirt. This conversation was followed by some friendship related things.
There is a young girl in my area who supposedly has trouble with friends and also has some vision issues. The technician who works with me is going to try to get us in contact with each other and I am super excited about that!!! Hopefully I'll hear more details about this soon. My mother and I followed this witha trip to McDonald's to get a sweet tea of course.
After pushing through this week, it turned out happily ever after. I think there is a lesson to learn from this. There may be crap in your life that you have to deal with, but if you push through it there is always a light at the end of the tunnel. Obviously the tunnel may be longer for some or more gruesome for others, but it will be there. The tunnel may open and close on you again, but one must cherish the good moments in life and thats what I did today. It may have stormed and I may have had to drive through a riven today,but guess what I didn't have a migraine and I made good connections today. Tomorrow I may have to work my butt off scooping ice cream all day, but in the end I'm with my friends and I get to go see friends from out of town afterwards. Its not that I don't like work, I'm just trying tos how that out of all bad comes good as long as you let it.
Sunday, April 14, 2013
Sisterly Reflections
Seventeen years ago today, I welcomed my little brother into my life. A day later I went to the hospital to visit him and I even got to hold him. I was only a toddler at the time, but I was so excited to have a baby brother. I was determined to help my mommy take care of this little bundle of joy. To this day I love my brother with that same exact love, but we show it in different ways. Its not so much about how we get along today, but the experiences that have lead us to where we are today and the happy moments in our lives together
Snort
Every child learns their animals at a young age or for the most part. We like to experiment with our voice and learn how to pronounce words. Sometimes in the process we pick up other ways to get our message across. During our early years, my brother and i made up our own words. I ended up calling elephants blemit's and my brother called rhino's, snorts which I find absolutely adorable. The medical geek in me even finds this kind of amusing since rhino actually means nose and you snort with your nose. Maybe children are smarter then we think.
Invisible Dog
My mother was never a stay at home mom, but she did have her own business with flexible hours. We still went to daycare though. During our daycare years my brother met a little girl who at the age of three he declared was his "girlfriend". I think they probably "broke up" when they were about five because they went to different schools and were interested in different kids, but they still played soccer together.
All kids want what is cool and somehow his "girlfriend", found out about this really cool invisible dog that you could take care of. My brother thought this was the best toy invention ever and begged my parents for one. We were down in disney at one point and my father showed my brother the invisible dog. The invisible dog was a wire with a wire harness/muzzle thing attached. My brother looked at the toy and realized there was no dog and then looked up to my father in utter disgust and declared that he didn't want said invisible dog.
The Hat
I have always been a rule driven person, but my brother has always been the one to push the buttons when it comes to the little stuff. He's a typical kid or now teenager. Several years ago we decided to go to disney world with some family friends. During our trip there, we went to a sit down restaurant, which we never do there. It was a great experience, but if you have ever been to the Prime Time Cafe, it is a hoot. At this time, my brother was still unaware of the fact that it was impolite to have your hat on at the table. My brother was asked by the waiter who was our "mother" for the night to take his hat off a number of times. He refused to take it. Eventually our waitress physically took the hat from my brother for the remainder of dinner. Of course he was allowed having it back at the end, but to see his reaction was hilarious. I think now my brother knows how important it is to take your hat off.
Slimed
Yeas ago we decided to enjoy our spring break at the nick hotel. One of the various activities that you could participate in was slime time live. We filled out an application and were a team picked to compete. At this time speed stack cups were a huge deal. Anyway we got picked to sit in the seats in fron of a huge crowd with the chance of being slimed. I got the fortune of sliming my little brother in the face. He totally deserved it after all fights he has picked with me.
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The Past 17 years haven't always been easy, but they sure have been interesting. My brother and I will always be together during happy times and during hard times.
Snort
Every child learns their animals at a young age or for the most part. We like to experiment with our voice and learn how to pronounce words. Sometimes in the process we pick up other ways to get our message across. During our early years, my brother and i made up our own words. I ended up calling elephants blemit's and my brother called rhino's, snorts which I find absolutely adorable. The medical geek in me even finds this kind of amusing since rhino actually means nose and you snort with your nose. Maybe children are smarter then we think.
Invisible Dog
My mother was never a stay at home mom, but she did have her own business with flexible hours. We still went to daycare though. During our daycare years my brother met a little girl who at the age of three he declared was his "girlfriend". I think they probably "broke up" when they were about five because they went to different schools and were interested in different kids, but they still played soccer together.
All kids want what is cool and somehow his "girlfriend", found out about this really cool invisible dog that you could take care of. My brother thought this was the best toy invention ever and begged my parents for one. We were down in disney at one point and my father showed my brother the invisible dog. The invisible dog was a wire with a wire harness/muzzle thing attached. My brother looked at the toy and realized there was no dog and then looked up to my father in utter disgust and declared that he didn't want said invisible dog.
The Hat
I have always been a rule driven person, but my brother has always been the one to push the buttons when it comes to the little stuff. He's a typical kid or now teenager. Several years ago we decided to go to disney world with some family friends. During our trip there, we went to a sit down restaurant, which we never do there. It was a great experience, but if you have ever been to the Prime Time Cafe, it is a hoot. At this time, my brother was still unaware of the fact that it was impolite to have your hat on at the table. My brother was asked by the waiter who was our "mother" for the night to take his hat off a number of times. He refused to take it. Eventually our waitress physically took the hat from my brother for the remainder of dinner. Of course he was allowed having it back at the end, but to see his reaction was hilarious. I think now my brother knows how important it is to take your hat off.
Slimed
Yeas ago we decided to enjoy our spring break at the nick hotel. One of the various activities that you could participate in was slime time live. We filled out an application and were a team picked to compete. At this time speed stack cups were a huge deal. Anyway we got picked to sit in the seats in fron of a huge crowd with the chance of being slimed. I got the fortune of sliming my little brother in the face. He totally deserved it after all fights he has picked with me.
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The Past 17 years haven't always been easy, but they sure have been interesting. My brother and I will always be together during happy times and during hard times.
Thursday, April 11, 2013
Don't say that!!! Its a bad word.
We all know its autism awareness month. I am extremely happy that we have a whole month devoted to autism, but there are some negative things about it that most people don't know. To be perfectly honest, living in an aspie world and putting up with such things is driving me nuts. This month is Light It Up Blue for autism. Most condition awareness programs have a color, but autism's blue color is bad because its not just about autism its about the overpowering organization who promotes it.
Most people in in The United States have heard of Autism Speaks. It is a huge organization that is run by money. They are a web based services that gives screening tips and basically compiles all news sources about autism each day. They make you think that they are raising money to help people on the spectrum, but they are raising money to have a bigger voice. The richer you are the better you are as a business.
If you actually look at there website, you won't find anywhere that Autism Speaks itself provides services to families. When you look under the services tab, they show there campaign, there blog and other resources that you could happily look up on the internet by yourself. They don't have chapters, therapies, conferences, or research. Under there research tab, they have all the news stories of other researchers. When you look at where the money goes, the majorities of the millions of dollars made every year go to the president and what not.
Now when you look at the title, it gets even worse. Autism Speaks!!! What do you think this means? Well if you go to their youtube channel, you will clearly see that there belief is that people with autism are locked inside their own mind by the devil with no voice or chance at life. We need to feed them and give them everything in life. Are you kidding me? I was told that I would be living in a group home as an adult and here I am going to college. I was never an unhappy child because I couldn't communicate properly. If you have the will, energy and right supports, you will succeed. What makes Autism Speaks think that feeding in to everything thing and telling the world that the devil is inside of them is giving them support? Use the damn money to go toward the services so they are terrorized.
Now that you have a little background, I want to share with you the whole autism awareness month part. I think autism awareness month is great, but I would be much happier if it was a rainbow theme as in the puzzle pieces design as opposed to the blue puzzle piece design. By supporting autism speaks, you are supporting the demonizing terrors of autism, but by celebrating autism in life you are supporting awareness and success of individuals who may need help but are going to live!!!
Most people in in The United States have heard of Autism Speaks. It is a huge organization that is run by money. They are a web based services that gives screening tips and basically compiles all news sources about autism each day. They make you think that they are raising money to help people on the spectrum, but they are raising money to have a bigger voice. The richer you are the better you are as a business.
If you actually look at there website, you won't find anywhere that Autism Speaks itself provides services to families. When you look under the services tab, they show there campaign, there blog and other resources that you could happily look up on the internet by yourself. They don't have chapters, therapies, conferences, or research. Under there research tab, they have all the news stories of other researchers. When you look at where the money goes, the majorities of the millions of dollars made every year go to the president and what not.
Now when you look at the title, it gets even worse. Autism Speaks!!! What do you think this means? Well if you go to their youtube channel, you will clearly see that there belief is that people with autism are locked inside their own mind by the devil with no voice or chance at life. We need to feed them and give them everything in life. Are you kidding me? I was told that I would be living in a group home as an adult and here I am going to college. I was never an unhappy child because I couldn't communicate properly. If you have the will, energy and right supports, you will succeed. What makes Autism Speaks think that feeding in to everything thing and telling the world that the devil is inside of them is giving them support? Use the damn money to go toward the services so they are terrorized.
Now that you have a little background, I want to share with you the whole autism awareness month part. I think autism awareness month is great, but I would be much happier if it was a rainbow theme as in the puzzle pieces design as opposed to the blue puzzle piece design. By supporting autism speaks, you are supporting the demonizing terrors of autism, but by celebrating autism in life you are supporting awareness and success of individuals who may need help but are going to live!!!
Monday, April 8, 2013
Laughter is the best medicine
True face!!! The past couple days haven't been rough, but they have been interesting to say the least. I am always a happy person, but just like anyone else, I also have emotions and things that tick me off. There have been a few things the past couple days that could have ticked me off and somewhat did, but in the end I just laughed. Laughing was the best solution and I am so glad I found the laughter in me and found that it helped.
Friendships are a never ending battle for me. I swear I feel like a little kid where I am friends with someone one day and enemies the next. This is especially happens on the job with coworkers. Don't get me wrong I love my coworkers and I love my supervisors, but sometimes they tick me off and sometimes they are just plain disrespectful. The past month has had a few rough spells. I have had two girls on two different occasions say some pretty sarcastic and extremely rude things to me.
The first time this happened at work was about three weeks ago. I got really upset and went and tattled to my boss. I explained to my boss that I had Aspergers and that sometimes I am a bit more sensitive, but this person bothered me. I told them that I admit I don't get sarcasm all the time, but there are lines to draw. I have an idea of when someone is being sarcastic to be mean and when someone is just goofing off. It takes time to learn this with people, but I do.
Let me back track and tell you a little bit about my first job first. I started volunteering at an adult daycare when I was about fifteen years old. I eventually got hired by them and have worked there ever since. My mom had done business with them since she sells t-shirs and stuff. My mom had a strong connection with them and has a strong connection with them to this day. If there is a problem at work my mom hears about it. Its not because my boss is tattling, but because she wants to help me. She handles me very patiently, but also has high expectations for me. We work things out and I feel comfortable with her.
When I came into this new job, I came in all by myself to apply and be accepted. There was no mommy or daddy around. As I grew more comfortable with the job I felt more willing to talk about my parents and my family. I figured with a larger business like a creamery, you would have a boss that told you what to do and that was it, but its not. The bosses at the creamery treat us all on an equal level and expect acceptance of all. The bosses to an extent are our friends. When there is down time they kind of just hang out with us and we share funny stories. I'm sure they will never let me live down the story of the town next to me being poor for instance, but thats another story. They are our friends who give us guidance as we need it. They are there for us when we need them too.
As I got more comfortable with my bosses I started to talk about my family. The fact that I have a brother and I would talk about my parents. My bosses friended me on facebook which I was half tempted to do due to professionalism, but they are our friends not our enemies. As time went on I was able to share more information like the fact that I have autism. Sometimes my mom goes to the creamery to get cream cheese and will come home and tell me someone said hi. My coworkers aren't ashamed of there parents or aren't judgmental of my relationship with my parents. Its great.
After going through the whole conversation with my boss, she took care of business and had absolutely no tolerance for disrespect of others. Within fifteen minutes of talking to her my coworkers were working like I have never seen them work before. It was great, but I was still a little nervous. I worry about acceptance a lot. I finally got over that then something else happened.
On Saturday i had work again. Once again someone said something really disrespectful in a sarcastic way. I had been perseverating on something and it wasn't my disability. Fancy that!!! For some reason they weren't going to take any of it though so they finally snapped. Instead of acting like a baby I went to some of the people who I trust at work that were my peers and not my boss to tell them I was upset and I didn't like it. I told them girls were being bitchy to me again and then I told them what happened. I stepped off the floor for a minute to get a drink and ran into my supervisor. I told her that people were being bitchy again and she said she knew and she already heard. It just makes me smile that these bosses who I came to not expecting anything are so gracious and care about there staff. I may have had to take a couple breaths, but in the end I just had to laugh and tell my self that sucks for them that they don't know how to be happy and respect and be happy with the joy in others. Following this I had to give a huge belly laugh though.
Earlier on Saturday, I had broken my glasses by accident. I picked them up and they snapped. I got really upset because it made it harder to do my schoolwork that was due today. My parents told me some of the stress wasn't the pain from the glasses being messed up, but just knowing. That was true. We tried going to the eye doctor to get them fixed, but they were closed. Now what? My dad taped up my glasses and I decided to name my self dork face for the day. It just turned into a big joke. I had to laugh and not get so upset. Everything was going to be okay, I just needed to laugh. It did the trick, but later that night I had some visitors at work who decided to tape there glasses so they could be dorks too, which just cheered me up even more. We took our pictures, but I'm a bit too embarrassed to show that one. But we laughed it off and now my glasses are fixed.
Today things got even more interesting. Let me start of by saying that I live in a really small down with a huge abundance of doctors. This means that it just so happens that two of my neighbors just so happen to be two of my doctors. None of which was by choice, but all of which was pure referral and finding out afterwards. We aren't a real social neighborhood so we hear a name and think they might live here, but aren't sure. Anyway, I got done with my doctor's appointment in a really small office. I walked out the door at about lunch time to check out. My dr.'s office in the office is behind the check-in desk, so when I walked out I could see who was on the other side. As I walked out something was clicking in my head that it was my neighbor and that it just so happened to be my neighbors wife. I finally was close enough for her to say hi. I told her that I wasn't sure it was her and then I said oh wait, wow you look NICE today as if she never looks nice. She took a day for herself and prettied her hair up and were a really nice t-shirt. As I said this my doctor chuckled because he knows I have aspergers. Thank God both him and his wife know since they are my neighbors. I see his wife occasionally walking the dog in the neighborhood so she could have had all the reason for me to think she normally looks crappy!!!! She doesn't normally look crappy, but she looked nice today. As I walked out I just thought how awkward that was. Everyone knew what I was saying but once again we all laughed it off. It was one time that my intonation was off. So many times people talk about having monologue voices in autism, but I don't. this time I think I slipped though. We laughed and we are all fine, but man there have been some "funny" things lately!
Friendships are a never ending battle for me. I swear I feel like a little kid where I am friends with someone one day and enemies the next. This is especially happens on the job with coworkers. Don't get me wrong I love my coworkers and I love my supervisors, but sometimes they tick me off and sometimes they are just plain disrespectful. The past month has had a few rough spells. I have had two girls on two different occasions say some pretty sarcastic and extremely rude things to me.
The first time this happened at work was about three weeks ago. I got really upset and went and tattled to my boss. I explained to my boss that I had Aspergers and that sometimes I am a bit more sensitive, but this person bothered me. I told them that I admit I don't get sarcasm all the time, but there are lines to draw. I have an idea of when someone is being sarcastic to be mean and when someone is just goofing off. It takes time to learn this with people, but I do.
Let me back track and tell you a little bit about my first job first. I started volunteering at an adult daycare when I was about fifteen years old. I eventually got hired by them and have worked there ever since. My mom had done business with them since she sells t-shirs and stuff. My mom had a strong connection with them and has a strong connection with them to this day. If there is a problem at work my mom hears about it. Its not because my boss is tattling, but because she wants to help me. She handles me very patiently, but also has high expectations for me. We work things out and I feel comfortable with her.
When I came into this new job, I came in all by myself to apply and be accepted. There was no mommy or daddy around. As I grew more comfortable with the job I felt more willing to talk about my parents and my family. I figured with a larger business like a creamery, you would have a boss that told you what to do and that was it, but its not. The bosses at the creamery treat us all on an equal level and expect acceptance of all. The bosses to an extent are our friends. When there is down time they kind of just hang out with us and we share funny stories. I'm sure they will never let me live down the story of the town next to me being poor for instance, but thats another story. They are our friends who give us guidance as we need it. They are there for us when we need them too.
As I got more comfortable with my bosses I started to talk about my family. The fact that I have a brother and I would talk about my parents. My bosses friended me on facebook which I was half tempted to do due to professionalism, but they are our friends not our enemies. As time went on I was able to share more information like the fact that I have autism. Sometimes my mom goes to the creamery to get cream cheese and will come home and tell me someone said hi. My coworkers aren't ashamed of there parents or aren't judgmental of my relationship with my parents. Its great.
After going through the whole conversation with my boss, she took care of business and had absolutely no tolerance for disrespect of others. Within fifteen minutes of talking to her my coworkers were working like I have never seen them work before. It was great, but I was still a little nervous. I worry about acceptance a lot. I finally got over that then something else happened.
On Saturday i had work again. Once again someone said something really disrespectful in a sarcastic way. I had been perseverating on something and it wasn't my disability. Fancy that!!! For some reason they weren't going to take any of it though so they finally snapped. Instead of acting like a baby I went to some of the people who I trust at work that were my peers and not my boss to tell them I was upset and I didn't like it. I told them girls were being bitchy to me again and then I told them what happened. I stepped off the floor for a minute to get a drink and ran into my supervisor. I told her that people were being bitchy again and she said she knew and she already heard. It just makes me smile that these bosses who I came to not expecting anything are so gracious and care about there staff. I may have had to take a couple breaths, but in the end I just had to laugh and tell my self that sucks for them that they don't know how to be happy and respect and be happy with the joy in others. Following this I had to give a huge belly laugh though.
Earlier on Saturday, I had broken my glasses by accident. I picked them up and they snapped. I got really upset because it made it harder to do my schoolwork that was due today. My parents told me some of the stress wasn't the pain from the glasses being messed up, but just knowing. That was true. We tried going to the eye doctor to get them fixed, but they were closed. Now what? My dad taped up my glasses and I decided to name my self dork face for the day. It just turned into a big joke. I had to laugh and not get so upset. Everything was going to be okay, I just needed to laugh. It did the trick, but later that night I had some visitors at work who decided to tape there glasses so they could be dorks too, which just cheered me up even more. We took our pictures, but I'm a bit too embarrassed to show that one. But we laughed it off and now my glasses are fixed.
Today things got even more interesting. Let me start of by saying that I live in a really small down with a huge abundance of doctors. This means that it just so happens that two of my neighbors just so happen to be two of my doctors. None of which was by choice, but all of which was pure referral and finding out afterwards. We aren't a real social neighborhood so we hear a name and think they might live here, but aren't sure. Anyway, I got done with my doctor's appointment in a really small office. I walked out the door at about lunch time to check out. My dr.'s office in the office is behind the check-in desk, so when I walked out I could see who was on the other side. As I walked out something was clicking in my head that it was my neighbor and that it just so happened to be my neighbors wife. I finally was close enough for her to say hi. I told her that I wasn't sure it was her and then I said oh wait, wow you look NICE today as if she never looks nice. She took a day for herself and prettied her hair up and were a really nice t-shirt. As I said this my doctor chuckled because he knows I have aspergers. Thank God both him and his wife know since they are my neighbors. I see his wife occasionally walking the dog in the neighborhood so she could have had all the reason for me to think she normally looks crappy!!!! She doesn't normally look crappy, but she looked nice today. As I walked out I just thought how awkward that was. Everyone knew what I was saying but once again we all laughed it off. It was one time that my intonation was off. So many times people talk about having monologue voices in autism, but I don't. this time I think I slipped though. We laughed and we are all fine, but man there have been some "funny" things lately!
Monday, March 25, 2013
Innovative Programming!
I made a last minute decision this past week to go to Penn College's open house. If you didn't know already that is where I will be attending school in the fall. The open house was primarily for prospective students whereas I am already an accepted student. As we entered the campus, they had signs guiding us this way and that way as to where to park. It was really cool and you could tell they had it very organized and that they cared. When I went through registration, I got a personalized schedule of events that I could attend. The first stop was the Occupational Therapy lab.
In the Occupational Therapy lab, we got to meet the director who will be one of our professors the first year; the college is really small. We also got to meet with current students who were able to give us all the gossip of what to do and what not to do. They also told us what professors to stick with and which ones they don't like. Then I got to go explore all the cool sensory stuff and they had a makeshift snoezelen/multi-sensory environment. They are a therapy room that originated in Europe, but are becoming more popular in the United States. They had ball pits and thinks to touch and all sorts of stuff. I need to focus on my anatomy.
When we were done with the occupational therapy, we went out to lunch at a bagel place that was alright. We had hoped to go to our favorite chicken place, but it was closed. After the bagel place we headed out to find dessert with no success since we had time to waste. Then we arrived back on campus to attend the disability services session.
During the session we learned about the supports and services we can receive at the college. We also got to meet the director and she is a really nice lady. I got to ask her a couple questions and I asked her about there autism programming. I thought they would have a support group or counseling, but they have something way better. They have created a program purely because of there passion for individuals on the spectrum. This is a small college with only one disability specialist and her assistant. They are creating a new program that will help us all exceed. There really shouldn't be any reason that I won't next year. The program has three components.
The first part of the program is an early move-in program. Typical students move in on Saturday. We will move in on Friday. Prior to our move in, we will have volunteer mentors that will have gone through a training the day before. We will meet our mentors and disability services on that friday for orientation. This is only for kids on the spectrum. We will do skits and some role-modeling about handling different experiences on college campus including approaching professors and faculty, more specifically about our needs.
On Saturday morning we will meet up with our mentor and they will help us get settled with our id and all sorts of stuff before everyone else moves in. That leads me to talk about the second part of the program. They have a program starting that will involve mentors. Every student on the spectrum who discloses it will be paired with a mentor. This mentor will meet with them five hours a month. This meeting could be to attend a social event if were insecure, or to help us with our organization. They will be there for us, but we can also be independent. The third part is for kids still in high school so I don't know much about it.
My mother and I walked up to the director at the end of the meeting. I was a bit nervous after all the information from the day. I think it was safe to say I was on information overload and overly tired from the past few days. She said that she had students that met with her once a week to go over their schedule and she sends them a color coated schedule that they can then tweak. The schedule she sends includes a structured time for studying, classes, clubs and the gym. They really want us to exceed and I love how much they really care about what they do.
I wish other college's had programs like this! Its so exciting!!! :)
In the Occupational Therapy lab, we got to meet the director who will be one of our professors the first year; the college is really small. We also got to meet with current students who were able to give us all the gossip of what to do and what not to do. They also told us what professors to stick with and which ones they don't like. Then I got to go explore all the cool sensory stuff and they had a makeshift snoezelen/multi-sensory environment. They are a therapy room that originated in Europe, but are becoming more popular in the United States. They had ball pits and thinks to touch and all sorts of stuff. I need to focus on my anatomy.
When we were done with the occupational therapy, we went out to lunch at a bagel place that was alright. We had hoped to go to our favorite chicken place, but it was closed. After the bagel place we headed out to find dessert with no success since we had time to waste. Then we arrived back on campus to attend the disability services session.
During the session we learned about the supports and services we can receive at the college. We also got to meet the director and she is a really nice lady. I got to ask her a couple questions and I asked her about there autism programming. I thought they would have a support group or counseling, but they have something way better. They have created a program purely because of there passion for individuals on the spectrum. This is a small college with only one disability specialist and her assistant. They are creating a new program that will help us all exceed. There really shouldn't be any reason that I won't next year. The program has three components.
The first part of the program is an early move-in program. Typical students move in on Saturday. We will move in on Friday. Prior to our move in, we will have volunteer mentors that will have gone through a training the day before. We will meet our mentors and disability services on that friday for orientation. This is only for kids on the spectrum. We will do skits and some role-modeling about handling different experiences on college campus including approaching professors and faculty, more specifically about our needs.
On Saturday morning we will meet up with our mentor and they will help us get settled with our id and all sorts of stuff before everyone else moves in. That leads me to talk about the second part of the program. They have a program starting that will involve mentors. Every student on the spectrum who discloses it will be paired with a mentor. This mentor will meet with them five hours a month. This meeting could be to attend a social event if were insecure, or to help us with our organization. They will be there for us, but we can also be independent. The third part is for kids still in high school so I don't know much about it.
My mother and I walked up to the director at the end of the meeting. I was a bit nervous after all the information from the day. I think it was safe to say I was on information overload and overly tired from the past few days. She said that she had students that met with her once a week to go over their schedule and she sends them a color coated schedule that they can then tweak. The schedule she sends includes a structured time for studying, classes, clubs and the gym. They really want us to exceed and I love how much they really care about what they do.
I wish other college's had programs like this! Its so exciting!!! :)
Tuesday, March 19, 2013
A Major Catastrophe
Last week I was scheduled for placement testing for college. The college I am going to be attending is a technical school that requires placement in both math and reading. The test takes about an hour and just tries to measure where you are standing since coming from high school. It shows what material you have retained and what material you need remediation in.
When we were given my placement test date, my parents decided that we would schedule a campus tour. They hadn't seen the campus like I had and I am going to be attending college there next year. When we schedule the tour, we were unaware that it would be pouring down rain and I have officially discovered I am not a duck.
Sensory issues are a huge issue (sometimes). Being a duck or someone who likes water would not describe me. First off, when I was getting prepared, I cared more about my entertainment needs on the road than I did about what I wore for the weather. That should tell you something and if you don't know what I am going to say next then, well you don't know me.
I took a deep breath and thought about this. My feet were freezing and I'm pretty sure I was drenched in water from my toes to my knees, especially with all the water I stepped in. I'm not the one who sees stuff, nor am I the who does stuff lightly. I was the one most likely to break a crayon from drawing to hard as a child. Lets put it that way. Of course when it comes to shaking hands, I guess I can't shake hard enough. Who Knew? I came to the conclusion that even though my feet were wet and I had to sit in testing for an hour with wet socks, crocs and pants, it was way better than sitting in wet underwear in your psychologist's office in seventh grade. True story!I finally made it through lunch and the testing. I knew I would be okay. I could handle wet socks even though I couldn't stand the feel of rain drops on my arms. The rain drops just hurt so bad as they hit against my skin. Think about when something startles you. That jump and that pain or skip of a heart beat you get. Think about that happening every time a COLD rain drop falls on your skin. You never know when they are going to hit or where. Even if you did, its cold.
On the way home, I took my socks off and discovered that wearing fuzzy socks was not a good idea either while walking in the rain because they really absorb water; probably about a pound or maybe even two. Try it someday. I thought I was done for the evening and then I got a text from my friend asking if we were still planning on going to Rita's ice after dinner. Great, I had been craving the ice since they opened. We were finally going, but I seem to always go to Rita's when it rains. I don't know if its my luck or what.
I told my friend that it would be great and to meet at my house at a certain time. I put my shoes on the shoe shelf and got cuddled up. Okay, maybe thats a lie because I never put my shoes on the shoe shelf because I am too lazy and just kind of through them there. Anyway, they were inside and the mammoth fur inside them was soft but thin. Remember those socks I told you about that absorbed all that water? Well when I went to put my crocs back on they were STILL DRENCHED.If you've ever seen the veggie tales or have been raised with them, you probably know the hairbrush song. At this point in time, I am pretty sure that this song sums up the situation and I was not going to leave until I found a different pair of shoes that were acceptable. That meant that I wasn't going to wear sneakers which was nearly impossible because I don't have much else. I have a pair of boots that I stared right at and still didn't see them. i know this because I came back later to see them right where I had looked. I finally found a croc, my friend already out the door praying I was going to go insane because of a pair of crocs.
I stomp of the stairs with my fat feet because I always doing everything hard and never lightly. I walk into my and yes, there is the other croc. You might be asking me why they were on two different floors in my house and fortunately for me, I don't have to blame myself for once. My organization was perfectly fine. The blame? My cats!!! Yes, my cats like to "hunt".I walked into work the next day and of course people had to ask me what the heck happened to my shoes. I replied that it was my cat. The answer I got back was, "I shoot the damn cat if I were you", understanding that this was coming from the most sarcastic crazy cat lady I knew, I kind of had to chuckle.
Needless to say, next time it rains, I better know where my boots are or keep my crocs dry!!!
Thursday, March 14, 2013
There is a Season
As the saying goes, there is a season for everything and there is time of change. I feel like I can relate to this statement on so many levels right now. I am going through some large transitions once again and realizing that as I get older things change. Things come into your life and things leave. The same goes for people. Transition has always been difficult for me, but I think relationship transitions are the hardest.
Two years ago I was signed up for Big Brothers Big Sisters. I was desperate for a social outlet and friends. I was suffering in a little bit of isolation and I needed to get out. Within two months of applying to the program, I was assigned a big sister. Unfortunately that match ended do to uncontrollable circumstances, but I was assigned a new big sister. I was a bit nervous, but I knew everything would be okay.
It was originally debated as to whether I would still receive services after I lost my first big sister. I was transition to my schools program for kids 18-21 and would no longer be going to school at the high school, but on a college campus. I wouldn't have received my diploma yet so they approved and I moved on. Last summer my services ended, but my Big and I have made a huge effort to hang out. It may not be once a week, but its every month or couple months. I can count on her to be there though. Things are going to change soon though.
I'm going off to college next year and I just found out my big sister is moving at the end of the school year. She just got engaged and she is moving far away. I worry about staying connected with her, but I know it will all be okay. We just had breakfast today and I know she will return. I was kind of whiny about it this morning, but then my mom pointed out that I'd be moving in the fall anyway.
Along with this I have other friends that I feel like I am losing touch with. I probably have to give you some background knowledge first though. Relationships have always been different for me. If someone is nice to me, I automatically consider them my BEST friend and think I need to invite them to every event I have, most specifically my fourth of July party, but sometimes my birthday parties and other events. I'm not sure why, but they could be sixty and I would care, they were still family friends then. One time I felt like my receptionist was my best friend at my dr.s office. When these people leave, it really makes my heart ache and its a hard transition for me.
Fortunately I have time with my big sister, but another friend of mine is slowly leaving my life. Its not that they don't care, but our lives just get so busy. I rank people as important in my life more strongly than most people (refer to above). We email back and forth and occasionally have lunch or dinner out together. Things have just been busy for us both and new things have come up. For one, this person now has a child and for another, I have school on the days they are off. Lastly, we both love to travel.
Sometimes I just don't understand why people fade away. I know its okay and I know I'll be fine, but sometimes its hard. Its kind of funny, not humorous, but weird. I have this serious issue with people moving or leaving me, but when it comes to death, I am the last one to cry. I am not emotionally attached to people the same way. I am not able to look at the full set of circumstances and their family. I look at the person in my head and think, thank god there no longer in pain. There in heaven where they belong and I get on with it. Its something to talk about and empathize with, but then get on. I'm not an apathetic person. Don't get me wrong, but I am more upset if someone gets hurt because its something i can visibly see the pain of. I have never been to a funeral and I don't think I am emotionally ready to either though.
Now this being said, I have never had people that I am extremely close to pass away nor have I been to the funeral. I have had a great friend of mine pass away, but she was gravely ill and I only saw her once a year. I have had relatives die, but I only saw them a couple times a year and I was young. My grandfather was a bit different though. I got somewhat emotional over him. When I though about him, I looked to the sky. He was a strong Catholic and one year we even got him vatican socks. I didn't have a deep connection with him, but he was a church goer and he was my family. I miss the fact that he used to love giving me hugs. I love how he always put up with us telling him we weren't his grandchildren because he was our step-grandfather. That was when I was younger and it hurt a bit, but he understood and he forgave us.
I just don't get why I am so apathetic towards death, but if the person is there, they have to be there. Maybe if there gone, I know I don't have a choice to see them again. I don't know. I haven't been to my grandparents house since my grandfather died. My grandmother comes to visit us all the time now though. I almost wonder if it would strike more if I stepped foot in my grandparents house and saw no grandpa or 'papa" as I called him. This is just tough stuff to think over and I think I need to look at bigger pictures and schemes of things in my life.
Its a miracle, we have facebook now where we connect with anyone and we have email. I guess love for me is more physical than mentally. Some of it may be my point of view or lack of theory of mind and my opinions. I need to look at everything and understand hat it happens for a reason. My reaction doesn't matter. If its negative, then thats my problem and if its positive and I am able to look at the brighter side of anything, then I will be a lot happier. Not only is there a season, but there is a reason for social interactions.
Two years ago I was signed up for Big Brothers Big Sisters. I was desperate for a social outlet and friends. I was suffering in a little bit of isolation and I needed to get out. Within two months of applying to the program, I was assigned a big sister. Unfortunately that match ended do to uncontrollable circumstances, but I was assigned a new big sister. I was a bit nervous, but I knew everything would be okay.
It was originally debated as to whether I would still receive services after I lost my first big sister. I was transition to my schools program for kids 18-21 and would no longer be going to school at the high school, but on a college campus. I wouldn't have received my diploma yet so they approved and I moved on. Last summer my services ended, but my Big and I have made a huge effort to hang out. It may not be once a week, but its every month or couple months. I can count on her to be there though. Things are going to change soon though.
I'm going off to college next year and I just found out my big sister is moving at the end of the school year. She just got engaged and she is moving far away. I worry about staying connected with her, but I know it will all be okay. We just had breakfast today and I know she will return. I was kind of whiny about it this morning, but then my mom pointed out that I'd be moving in the fall anyway.
Along with this I have other friends that I feel like I am losing touch with. I probably have to give you some background knowledge first though. Relationships have always been different for me. If someone is nice to me, I automatically consider them my BEST friend and think I need to invite them to every event I have, most specifically my fourth of July party, but sometimes my birthday parties and other events. I'm not sure why, but they could be sixty and I would care, they were still family friends then. One time I felt like my receptionist was my best friend at my dr.s office. When these people leave, it really makes my heart ache and its a hard transition for me.
Fortunately I have time with my big sister, but another friend of mine is slowly leaving my life. Its not that they don't care, but our lives just get so busy. I rank people as important in my life more strongly than most people (refer to above). We email back and forth and occasionally have lunch or dinner out together. Things have just been busy for us both and new things have come up. For one, this person now has a child and for another, I have school on the days they are off. Lastly, we both love to travel.
Sometimes I just don't understand why people fade away. I know its okay and I know I'll be fine, but sometimes its hard. Its kind of funny, not humorous, but weird. I have this serious issue with people moving or leaving me, but when it comes to death, I am the last one to cry. I am not emotionally attached to people the same way. I am not able to look at the full set of circumstances and their family. I look at the person in my head and think, thank god there no longer in pain. There in heaven where they belong and I get on with it. Its something to talk about and empathize with, but then get on. I'm not an apathetic person. Don't get me wrong, but I am more upset if someone gets hurt because its something i can visibly see the pain of. I have never been to a funeral and I don't think I am emotionally ready to either though.
Now this being said, I have never had people that I am extremely close to pass away nor have I been to the funeral. I have had a great friend of mine pass away, but she was gravely ill and I only saw her once a year. I have had relatives die, but I only saw them a couple times a year and I was young. My grandfather was a bit different though. I got somewhat emotional over him. When I though about him, I looked to the sky. He was a strong Catholic and one year we even got him vatican socks. I didn't have a deep connection with him, but he was a church goer and he was my family. I miss the fact that he used to love giving me hugs. I love how he always put up with us telling him we weren't his grandchildren because he was our step-grandfather. That was when I was younger and it hurt a bit, but he understood and he forgave us.
I just don't get why I am so apathetic towards death, but if the person is there, they have to be there. Maybe if there gone, I know I don't have a choice to see them again. I don't know. I haven't been to my grandparents house since my grandfather died. My grandmother comes to visit us all the time now though. I almost wonder if it would strike more if I stepped foot in my grandparents house and saw no grandpa or 'papa" as I called him. This is just tough stuff to think over and I think I need to look at bigger pictures and schemes of things in my life.
Its a miracle, we have facebook now where we connect with anyone and we have email. I guess love for me is more physical than mentally. Some of it may be my point of view or lack of theory of mind and my opinions. I need to look at everything and understand hat it happens for a reason. My reaction doesn't matter. If its negative, then thats my problem and if its positive and I am able to look at the brighter side of anything, then I will be a lot happier. Not only is there a season, but there is a reason for social interactions.
Saturday, March 2, 2013
Okay, not quite back to square one...
But I just had another break through seizure last night and I am not happy about it at all. I was diagnosed with epilepsy when I was three and I was put on medicine. It was normal and I never really knew I was having a seizure when I would have them. I was never coherent enough to know anything. I only remember two seizures, one of which was on the way to the hospital where I knew I would be okay and another one was small and I knew I would be okay. Now that I am older and re-diagnosed during a time where I know what big seizures really due to you, I am scared.
I posted a while back, farther back then my second epilepsy diagnosis about an anxiety attack I had when I went to see temple grandin. That episode was the type I had in July too that they called a seizure. When I wrote that post, I talked about how I would manage these episodes at school because sometimes I cry. I don't care how old I am, if something is scary, I will react. Questions are coming to my head again as I once face that same concern. I don't want to scare my roommates.
I am stuck as to what to do. We are trying to get me a private room when I move off to college, but that is still in the works. If I have my own room I can cry all I want and call my mom, but I also risk having a grand mal seizure with no one present to call 911 or assist me. If I have a roommate I would have to decide whether to tell them about my seizures or not. If I told them I would have to think about how they would react. It could very possibly push them away because its weird or it could scare them, but once again I have them there. If I had roommates that were aware, I don't know how understanding they would be of the emotional component when I cry or need to call my mother for support. Last night I hollered for my mom who was just down the hall to come and snuggle with me and comfort me. When I go to college, I'll have to be a big girl and I know I can do it, but a phone call might help.
When I have my episodes, I always think they are so awful and then a couple days later I feel like what ever. I am once again reminded several months later how agonizing they are. My legs start to shake and then jerk as I walk like a robot or an ostrich, then it moves up my torso and eventually makes it difficult to breathe because you need muscle control to breath and you don't have a whole lot. You proceed to ride the seizure out, only to worry that it will happen again or maybe even worse.
There are so many things to think about. I'm not letting anything ruin my plans and dreams, but sometimes circumstances make you think a little bit. I think its kind of cool to figure out your morale dilemma's even though there tough because in the end, you feel good about it. I thought I would be done grieving over the diagnosis of last summer, but when a seizure strikes again, the emotional rollercoaster starts again. With all hope and positive thinking this grievance will go away soon. I am God's masterpiece and he has plans for me even if those plans require me to make some hard choices and some scary paths. :)
I posted a while back, farther back then my second epilepsy diagnosis about an anxiety attack I had when I went to see temple grandin. That episode was the type I had in July too that they called a seizure. When I wrote that post, I talked about how I would manage these episodes at school because sometimes I cry. I don't care how old I am, if something is scary, I will react. Questions are coming to my head again as I once face that same concern. I don't want to scare my roommates.
I am stuck as to what to do. We are trying to get me a private room when I move off to college, but that is still in the works. If I have my own room I can cry all I want and call my mom, but I also risk having a grand mal seizure with no one present to call 911 or assist me. If I have a roommate I would have to decide whether to tell them about my seizures or not. If I told them I would have to think about how they would react. It could very possibly push them away because its weird or it could scare them, but once again I have them there. If I had roommates that were aware, I don't know how understanding they would be of the emotional component when I cry or need to call my mother for support. Last night I hollered for my mom who was just down the hall to come and snuggle with me and comfort me. When I go to college, I'll have to be a big girl and I know I can do it, but a phone call might help.
When I have my episodes, I always think they are so awful and then a couple days later I feel like what ever. I am once again reminded several months later how agonizing they are. My legs start to shake and then jerk as I walk like a robot or an ostrich, then it moves up my torso and eventually makes it difficult to breathe because you need muscle control to breath and you don't have a whole lot. You proceed to ride the seizure out, only to worry that it will happen again or maybe even worse.
There are so many things to think about. I'm not letting anything ruin my plans and dreams, but sometimes circumstances make you think a little bit. I think its kind of cool to figure out your morale dilemma's even though there tough because in the end, you feel good about it. I thought I would be done grieving over the diagnosis of last summer, but when a seizure strikes again, the emotional rollercoaster starts again. With all hope and positive thinking this grievance will go away soon. I am God's masterpiece and he has plans for me even if those plans require me to make some hard choices and some scary paths. :)
Sunday, February 24, 2013
Memories!!!
As I was heading out of the doctors' office, I was stopped in my tracks by my neurologist. She had a piece of paper with CAMP CHAMELEON written across the top in big, bold, black letters. She asked me if I had ever been away from home before, which I speedily replied, "I've never been away from home except to sleep at my babysitters house". Wow, is that an awful statement to make, but at the same time I was only about eight years old.
"This is a two day overnight camp just for kids with epilepsy", my dr. told me. Then I scanned over the flyer and saw two neurologists on the flyer who would be my medical providers for the weekend. They would monitor my dosage of medication, give it to me and take care of me if I had a seizure. I looked down farther on the list where it described the activities we would do: fishing, boating, archery, swimming, arts and crafts, games and so much more!!!
Three months went by and my mother had filled out the form for camp and sent it in. It was time for a check up with my neurologist again as I was being monitored very closely. At this point I would still have one more grand mal seizure that would occur a year later unbeknownst to us, but she also monitored my cranial nerves, balance and many other things. She actually even helped my parents find a temporary diagnosis for my "issues".
"The camp is only two days, but now you have to wait to see if you get in", I remember hearing come out of my doctor's mouth. Those words made me feel anxious on so many levels. It made it sound so official that I would be leaving my mommy and daddy for a whole weekend. At the same time I felt nervous that I wouldn't make the cut-off and that there wouldn't be enough room for me at camp. I didn't really know what to think, but I knew everything would be okay in the end.
That following may, it was actually the 31st, I took the long drive up to Danville to see my eye doctor who would later perform surgery on my eyes. He also monitored my eyes and my muscles carefully. It was on the way to camp, so why not stop?
Early that afternoon, we arrived at camp and the first thing I remember seeing was a swimming pool. I had no idea they had a swimming pool and thought we would do all our water activities in the pond. Boy was I impressed. I hopped out of the car, grabbed my bags and headed over to the check-in tables where my very own doctor had greeted me and took my pills for me.I was still a little bit nervous, but when I walked into the main building to start camp, I was ready to party. They had stations set up all over the room with crafts and activities to do. I remember painting a horse head since it was circus theme. Later we would at a long stick to the back so that I could put up in my front lawn. A little while later we went out to play "kickball" which basically meant kicking a ball around, but it was fun.
Once everyone got to camp we had a little clown show and someone made me a balloon animal. Once we were done with that we went outside to play some relay games. I remember spraying shaving cream over our counselors head and then trying to through chips on them. With my perky little self, on my down time I would walk up to ever kid and ask them there name, age, and favorite color in Simply J fashion. One of the first people I met was another person with the same name as me. From that day on I knew I was meant to be his buddy. He had the same name as me and he was just so sweet, but struggled so much.
During our week at camp we did get to go swimming. It was one of maybe two or three years that we actually got to go swimming since it is always so cold out. Other times we would go in the hot tub. I was very disappointed because I couldn't swim like the big kids so I couldn't jump off the diving boards, but guess what? I could actually go anywhere in the shallow water because everyone was really calm. At other camps, when we went swimming I could only go up to my waist with a life jacket on because they were scared of seizures. We also had a camp fire with KJ, did drums with another lady, had a hayride and a carnival at the end of the week. We also saw a dog show. I came home with an athletic bag full of goodies and I'm pretty sure it was overflowing. There was candy, juice, glow necklaces, and all sorts of other prizes. Every year our camp director would give us something special.
These memories are so important to me because this was wear I discovered my first bit of independence and acceptance. I came home at the end of the weekend feeling like I had just reunited with family I hadn't seen for five years. I went back the next year and ended up going for ten years until I was too old. Now i'm proud to be a junior counselor and last year I even got to be a counselor for a camper that I knew from another camp.
These exciting moments wouldn't happen though if it weren't for Camp Victory and the founders of Camp Chameleon. If you ever have time I highly recommend that you watch The Camp Victory Story which was produced by a branch of PBS called WVIA. If your a local friend and on facebook, just shoot me a message to borrow it.
Tonight I came across some OLD photos from the 90's when the director was searching out a camp that would help her son and many others affected by epilepsy. Today we are a camp that has a different theme every year and hosts about 20 kids with a one on one counselor and some times two counselors to a kid. To this day the original director has been running the camp for 13 years. Camp would not be the same with out her and I can't wait to see what camp holds for the future, but let me leave you with a photo from camp. This is the family that has changed my world and taught me where to find acceptance and family.
"This is a two day overnight camp just for kids with epilepsy", my dr. told me. Then I scanned over the flyer and saw two neurologists on the flyer who would be my medical providers for the weekend. They would monitor my dosage of medication, give it to me and take care of me if I had a seizure. I looked down farther on the list where it described the activities we would do: fishing, boating, archery, swimming, arts and crafts, games and so much more!!!
Three months went by and my mother had filled out the form for camp and sent it in. It was time for a check up with my neurologist again as I was being monitored very closely. At this point I would still have one more grand mal seizure that would occur a year later unbeknownst to us, but she also monitored my cranial nerves, balance and many other things. She actually even helped my parents find a temporary diagnosis for my "issues".
"The camp is only two days, but now you have to wait to see if you get in", I remember hearing come out of my doctor's mouth. Those words made me feel anxious on so many levels. It made it sound so official that I would be leaving my mommy and daddy for a whole weekend. At the same time I felt nervous that I wouldn't make the cut-off and that there wouldn't be enough room for me at camp. I didn't really know what to think, but I knew everything would be okay in the end.
That following may, it was actually the 31st, I took the long drive up to Danville to see my eye doctor who would later perform surgery on my eyes. He also monitored my eyes and my muscles carefully. It was on the way to camp, so why not stop?
Early that afternoon, we arrived at camp and the first thing I remember seeing was a swimming pool. I had no idea they had a swimming pool and thought we would do all our water activities in the pond. Boy was I impressed. I hopped out of the car, grabbed my bags and headed over to the check-in tables where my very own doctor had greeted me and took my pills for me.I was still a little bit nervous, but when I walked into the main building to start camp, I was ready to party. They had stations set up all over the room with crafts and activities to do. I remember painting a horse head since it was circus theme. Later we would at a long stick to the back so that I could put up in my front lawn. A little while later we went out to play "kickball" which basically meant kicking a ball around, but it was fun.
Once everyone got to camp we had a little clown show and someone made me a balloon animal. Once we were done with that we went outside to play some relay games. I remember spraying shaving cream over our counselors head and then trying to through chips on them. With my perky little self, on my down time I would walk up to ever kid and ask them there name, age, and favorite color in Simply J fashion. One of the first people I met was another person with the same name as me. From that day on I knew I was meant to be his buddy. He had the same name as me and he was just so sweet, but struggled so much.
During our week at camp we did get to go swimming. It was one of maybe two or three years that we actually got to go swimming since it is always so cold out. Other times we would go in the hot tub. I was very disappointed because I couldn't swim like the big kids so I couldn't jump off the diving boards, but guess what? I could actually go anywhere in the shallow water because everyone was really calm. At other camps, when we went swimming I could only go up to my waist with a life jacket on because they were scared of seizures. We also had a camp fire with KJ, did drums with another lady, had a hayride and a carnival at the end of the week. We also saw a dog show. I came home with an athletic bag full of goodies and I'm pretty sure it was overflowing. There was candy, juice, glow necklaces, and all sorts of other prizes. Every year our camp director would give us something special.
These memories are so important to me because this was wear I discovered my first bit of independence and acceptance. I came home at the end of the weekend feeling like I had just reunited with family I hadn't seen for five years. I went back the next year and ended up going for ten years until I was too old. Now i'm proud to be a junior counselor and last year I even got to be a counselor for a camper that I knew from another camp.
These exciting moments wouldn't happen though if it weren't for Camp Victory and the founders of Camp Chameleon. If you ever have time I highly recommend that you watch The Camp Victory Story which was produced by a branch of PBS called WVIA. If your a local friend and on facebook, just shoot me a message to borrow it.
Thursday, February 14, 2013
Alternatives
I know over the years I wanted to get all the fidgets and sensory stuff to help me cope with over-stimulation because I have aspergers. I was always encouraged to fit in with my peers and not let the little stuff get to me. People would worry that those extra little things would set me apart from my peers, but I have some ideas for those that don't want to go the therapeutic, and expensive brand name sensory stuff.
Weighted Blanket
Okay yes, this one is from a therapeutic company or can come from a therapeutic company. Having a weighted blanket for falling asleep at night has helped me tremendously. It may be a bit pricy, but on the positive side, its not something that people other than your family really know about. Its not an obvious object like a weighted vest that clearly sets you apart. You use it at home and thats it.
Trampoline
I have used the trampoline to deter me from many tantrums. It may not stop a tantrum, but it may hold it off or lessen the severity of this. Its not necessary to by some big expensive one from some outrageous company like Fun and Function, but go for the alternative cheap options. I really think any home should have a trampoline. Once again, its not something that people outside the home will think about, but you can't use it outside. Just get those personal ones. When you jump, it gives joint compression to your legs which release chemicals int he brain that relax you, just like the blanket.
Shoes
Shoes have been a huge problem for me. I hate how they squish your feet. They rub up agains my feet and I can't move my little toes. Back when Crocs were around, i got a pair because they were cool. Low and behold, they became my favorite pair of shoes. No matter how dorky I look, I wear crocs and in the winter some cute boots thats look like Ugg knock offs from Macy's. Maybe not a cheap option, but something that is an easy accommodation.
Pajama's
It took me forever to convince my family I needed one piece pajama's with feet. It is now the best decision I have ever made and has helped me sleep too. I used to have problems with sleeping and my sleeves coming up. Now I feel whole as one encased in this cute little suit. The only problem is I can only by them around Christmas time. Everyone used to tell me I would be too hot in them, my feet would get tangled, the butt would rip, but no I love them. Now I don't know what I would do without them.
I really wanted to share these with you because some of them are really simple and not very visible. You may also have a child that can't communicate how they feel and these may be some options to try and even maybe do the opposite, like always use sneakers. Everyone is different which is important to remember. Accommodations can be fun if you let them be too!!!
Weighted Blanket
Okay yes, this one is from a therapeutic company or can come from a therapeutic company. Having a weighted blanket for falling asleep at night has helped me tremendously. It may be a bit pricy, but on the positive side, its not something that people other than your family really know about. Its not an obvious object like a weighted vest that clearly sets you apart. You use it at home and thats it.
Trampoline
I have used the trampoline to deter me from many tantrums. It may not stop a tantrum, but it may hold it off or lessen the severity of this. Its not necessary to by some big expensive one from some outrageous company like Fun and Function, but go for the alternative cheap options. I really think any home should have a trampoline. Once again, its not something that people outside the home will think about, but you can't use it outside. Just get those personal ones. When you jump, it gives joint compression to your legs which release chemicals int he brain that relax you, just like the blanket.
Shoes
Shoes have been a huge problem for me. I hate how they squish your feet. They rub up agains my feet and I can't move my little toes. Back when Crocs were around, i got a pair because they were cool. Low and behold, they became my favorite pair of shoes. No matter how dorky I look, I wear crocs and in the winter some cute boots thats look like Ugg knock offs from Macy's. Maybe not a cheap option, but something that is an easy accommodation.
Pajama's
It took me forever to convince my family I needed one piece pajama's with feet. It is now the best decision I have ever made and has helped me sleep too. I used to have problems with sleeping and my sleeves coming up. Now I feel whole as one encased in this cute little suit. The only problem is I can only by them around Christmas time. Everyone used to tell me I would be too hot in them, my feet would get tangled, the butt would rip, but no I love them. Now I don't know what I would do without them.
I really wanted to share these with you because some of them are really simple and not very visible. You may also have a child that can't communicate how they feel and these may be some options to try and even maybe do the opposite, like always use sneakers. Everyone is different which is important to remember. Accommodations can be fun if you let them be too!!!
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