A New School Year.

My brother for his whole school carer has been in an inclusion classroom, which is a regular classroom full of "normal" students with one disabled child who has a 1 on 1 aid that's with them all the time; but this year is different. This year Justin has been put in a 6-1-1 classroom, which is a classroom with 6 students, one teacher, and one aid. We knew that this was going to happen, we didn't like it, but it happened. We felt as if Justin was academically fit enough to stay in an inclusion classroom, but because of his violent behavior, the school said otherwise. The medicine Justin was taking was making him extremely aggressive and he starting acting out in class. He starting hitting teachers, hitting students, and hitting himself when he got frustrated. When every single note home starts with "Justin had a rough day" you start to think a good day is as realistic as his autism simply vanishing in the blink of an eye. Then one day, my mother decided to take him of most of the medication. He started to lose most of his anger and he stopped biting himself when he got upset. And even though Justin's behavior has managed to settle down, the school board still feels that it is mandatory to keep him in the 6-1-1 classroom. In my heart i know that Justin will get out of there some day and go back to learning with the typical children, but realistically, it's a lot harder then just fixing your behavior. It isn't very likely for children who have been put into the 6-1-1 program to ever get out. But then again, Justin isn't the typical disabled child, he's someone special. I've always had dreams about him going to college, i think he would love it, and he's a smart kid. But whatever happens 9 years from now, he's stuck in a silly 6-1-1 classroom, and i know for some students this is just what they need, but i don't think Justin is one of them. Oh well, as long as he's getting an education, who can complain right?       

Poems

This morning my mother showed me a wonderful poem by Emily Pearl Kingsley. The poem is called "Welcome To Holland". After i finished reading it i breathed a huge sigh of relief, for this woman helped finally answered my question on how do i explain to people what living with a sibling with a disability is like. Even though the poem is geared toward the parents and not the siblings I still feel as if it was, in a way, made for me. It made me feel like this is a very beautiful was of looking at the situation at hand. I hope you love it as much as i do.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Birthday parties

Today is Justin's 10th birthday, in the past his birthday parties have just been family and he's been totally okay with that but in my heart I always felt a little sad for him because i want him to have friends but if hes happy then whatever. But this year he had his heart set on having all of his friends from summer school to come. So we gave him invitations to hand out to each of his class mates and only one kid RSVP. At first Justin had a melt down but then we explained to him that sometimes people get very busy during the summer and that seemed to calm him down. Now the story with the only person who RSVP is that this boy is 10 years old and had never been invited to a birthday party before and apparently when he received the invitation and brought it home he was so full of joy and happiness the mother called mine and RSVP as soon as possible and couldn't stop thanking her. When my mom told me this I felt so happy and sad at the same time. Now when we got to Chuck E. Cheese (Justin's had his birthday there every year since he was like 4) we were there about an hour before his friend came and he was totally content with playing alone but as soon as his little friend came over and gave him his present i saw the light in his eyes sparkle just a little bit more. They didnt necessarily play with each other but they stayed in the same area and waited for each other before leaving to go some where else. And when it was time to eat they sat at a little booth together and ate cake and pizza just as happy as too peas in a pod. When i glanced over and saw them talking with each other it brought tears to my eyes. I've never seen Justin carry an actual conversation with anyone. And the little boy he was with is also autistic so there was no confrontation, no judgement, and no cruel words of hate and it warmed my heart to see him so happy. He did at one point get a little upset when the little boy helped him blow out that candles but what can you do (: Even though only one boy showed up, thats really all Justin needs. It was nice not having to occupy him the entire time, and it was also nice to see him interact with someone his own age. weather he acts ten years old or not he was the happiest little boy in the entire building and it made me feel so good inside. To see my baby brother grow up and be such a happy guy is a blessing and we cant wait for many more happy years to come. 

Sweet Serendipity - Lee DeWyze ~ w/ lyrics

There Is Hope

So just a few minutes ago, I was reading one of my e-mails and found out that the teacher that helped me start this blog has set up a meeting for him and I to attend sometime at the end of August with a group called Parents Of Special Children to try and get a support started  for kids my age with siblings with autism! This is what we have been trying to get accomplished for quite some time now and it looks like all of our hard work is finally paying off. Not only will this be good for me, but will help so many people in my community as well! My prayers have been answered and I owe all of this to Mr. Leece. Without him, none of this would have gotten accomplished and the hole concept of a blog, or even a support group would be nothing but a dream. I am forever in debt to him for this is such a huge step for not only me but everyone who has ever had a dream to start a program but never knew how and never thought that they could do it. Well, to all those people out there who are reading this, you can do it. I was in your shoes once, thinking that the notion of starting something so remarkable would never work, but it looks as if it is working! Never be afraid to chase a dream because you feel as if it is to far-fetched or may never work. Because you will never know until you try (:  

The Worst Idea EVER!

Okay so this post has nothing to do with my brother or my day, it has to do with my pure hatred for tumblr. I personally think it is a waist of time. The point of a blog is to write and express yourself in the most least judgmental place possible, not stupid pictures. It bothers me when people try to act sooo deep and emotional on tumblr just by using pictures. Like come on seriously? That not a blog. Thank you for listening. (: 

JUST SNAP OUT OF IT ALREADY!

So about a week or two ago my brother started summer school. He has been going to summer school since he was about three years old and has never had a problem with it. The summer school he goes to is more along the lines of a day camp then school. They going swimming, play on the playground, but also incorporate academics in there somehow. Yesterday at 7:05am when my mom crept up the stairs to quietly wake up my brother she saw that he was already dressed and watching t.v, so she went back down stairs. When its was time to brush his teeth she went upstairs to get him. Justin usually has a fit when it comes to brushing his teeth but today's tantrum was extra dramatic. My mother had to physically drag my 10 year old brother down the stairs as hes screaming and flailing his arms around on the way down at 7:30 in the morning waking me up. Eventually, after many agonizing minutes of hassle just to brush his teeth the task was completed. By this time i was wide awake and had dragged myself out of bed and plopped on the living room sofa. A few minutes later i hear Justin screaming and crying by the front door like a 6 year old child. Obviously, my brother is not a six year old child and sometimes I forget that his brain doesn't have a grasp on the concept that when you are 10 years old you are obligated to act your age. I guess the hole tantrum started because he finally realized that he has to go to school, but my sister and i dont. He wrapped his mind around the notion that if he yells loud enough and acts so out of control, then he doesn't have to go to summer school. It honestly was one of the most embarrassing things Ive ever witnessed in my own house. He was on the ground kicking and screaming all because he didnt want to go to school. It just doesn't seem fair that he can just act his age! Its hard to want to take him anywhere because if he doesn't get what he wants then he just throws himself around. I often forget that it isn't his fault, and i often loose control and snap. I yell at him begging him to JUST SNAP OUT OF IT ALREADY!!! but in all reality, i know that wont happen. It breaks my weary heart to know think that what if he acts like this forever, what if im stuck with a 6 year old brother for the rest of my life? At this point we dont really have much of a choice but to deal with it. I enjoy and cherish every moment with Justin, but when i look at other 10 year old boys, I get a little depressed because i just want Justin to enjoy his life to the fullest, but then i smile to myself and realize that he will, just in his own special way (:          

home for the summer

This summer im going to be living with my mom. When i first walked in the door, Justin came up and gave me the biggest hug in the world. All week he had been telling everyone that his big sister was coming home. I feel like its the right thing to do for him to come back. I miss him more and more and ever day got harder and harder to hear about all the complications and not being there to at least try and help. Every morning when i walk into the living room, Justin is always there and as soon as he see me a smile come upon his face erasing the frown that once controlled his morning. Sorry that i haven't posted in a while! I promise ill post more regularly. Any questions you have I'd love to answer (:   

Father's Day Picnic

Sunday was Father's Day. Every year we always have a picnic at my uncle's house and at his house thee is a 4' deep pool. Now, as you can imagine having my brother and sister in a pool together isn't the best idea,but they seemed to be fine so i went over and hung out with my daddy. About thirty minutes into the picnic my little cousin came over to play catch with my brother and my older cousin and as soon as he came over he started calling my brother stupid and mean and a monster. Justin understands that he is different and like any other person gets his feelings hurt when people call him names, so to try and calm him down i suggested that he goes back into the pool. Around the time when that happened my dad came over and told me that he had to go drop off my aunt at her house and would only be a few minutes. Expecting that what he said was true i told him okay and went over to talk to my grandfather. Not even 10 minutes after my dad was gone did i hear a scream coming  from the pool. i scurried over there to see what was the matter and i see my brother trying to push my sister under the water. I started yelling, "Justin stop!" and he looked at me and stopped. He started grunting and huffing. I knew at that point it wouldn't be safe for Justin to be in the pool by himself. I swiftly changed out of my clothes, into my bathing suit and was walking to the pool to try and calm down my brother. As   i was walking i over heard my little cousin saying to my aunt "i would go in the pool, but Justin is in there, he ruins everything." I wanted to turn around so badly and just hit him. I could feel the rage and hate build up inside of me and all i wanted to do at that point was scream in his face. But knowing that my brother needed me, i swallowed my pride and walked to the pool. When i got up on the deck i turned around and saw my little cousin was behind me. I ignored him and jumped into the bitterly cold water, swimming to Justin. When Justin's eyes met my cousin's i could tell something was about to happen. Justin pushed me out of the way and dashed to my cousin. i quickly caught up with him, grabbed him, and pulled him to the side of the pool. I started screaming Justin whats wrong! And all he said was "I have to kill him." By the time this all happened my dad had been gone 15 minutes so i was left all alone to deal with the situation. i tried to distract him by throwing him in the air or showing him the pool toys, but nothing would get his mind off of hurting the little 6 year old boy. I asked Justin why he wanted to hurt him so badly and he said that my cousin had called him stupid and an idiot. I tried to explain to him that hitting is not okay but no matter how hard i tried he kept getting away from me, rushing over to my cousin and i had to chase after him. I felt hopeless. Nothing i did was working. He spent almost 20  minutes screaming and chasing this little boy and all i could do was run after him. no adult dared to come help, i dont know why just no one came and tried. I kept begging him to try and calm sown but he didnt listen! i did everything in my power to try and make him stop growling and hitting me and running after this little boy but nothing was working. When my dad finally got back i screamed for him and he came running to the pool edge. As soon as he got to the side, i burst into tears. Not because my brother had hit me or anything, but because i could see nothing but pure hate in  Justin's eyes. The pale crystal blue eyes that were once filled with joy, love, and happy memories were now nothing but rage, violence, and hate. I couldn't help myself. All i knew what to do was cry. I felt like i had failed as a sister. No matter what i did i couldn't get the thought of hurting my cousin out of his mind and no one came over to help. i locked myself in the bathroom until it was time to go. The hole car ride home i didnt look at my brother once. I felt like it was my fault he couldn't calm down. I had failed him. I was on my own and all i did was make everything worse.  if you have any questions or comments please feel free to saw something :)

Is It My Fault?

About six months ago i moved in with my dad. My brother and i have always been very close and leaving him was one of that hardest things i had to do. Change had never been one of my brothers strong points so i was a little nervous on leaving. Ever since i had left Justin's behavior had changed for the worse. He started getting more and more aggressive, his attitude had become more negative, and his focus had disappeared. I feel as if this is my fault. All growing up i was kinnda like his security blanket. i always had to be there when he went to bed, always was one of the first people he wanted when he was sick, and had been there with him his hole life. About a week after i was gone was when he started changing. A few times a week my mom would get a call from the school saying that Justin had been sent to the principals office for hitting or refusing to do his work, and this had happened in the past but never as frequently. Also, his behavior at home had spiraled out of control. I remember getting phone calls from my mother having her tell me how he had hit the dog, or tackled her and started hitting her with a toy sword. The phone calls also consisted of how he would come home and destroy the house. Screaming that he was going to burn down the house which he obviously wont but hearing that from a 10 year old child is upsetting. She comes to me telling me how he hits the teachers at school. And the thing is, none of this was ever as bad as it is now when i was with him on a regular basis. He never thought of hitting my mother when i was home or he never once screamed that he was going to cut his hands off. A part of me if filled with guilt from seeing what a struggle Justin has become. Most days i wonder, if i did go and move back in with my mother, would anything change? Am i being selfish for leaving him to make my situation better? I understand that i am not the parent but seeing my baby brother living his life in anger and sorrow day by day is a heart breaking experience. i leave myself wondering, does anyone else feel the same? Can anyone help me out of this hole of emotion i have dug myself into? If so, im reaching out to you with open arms and an open heart. I would love to answer any questions that you have. (:       

My First Blog

hello there, my name is Katie. im from central New York. Almost 10 years ago my brother was born. At first, we never noticed any problems or signs that he might be, well, different. when Justin was about three years old we took him to a specilist and they told us he had all the signs of autism. that was the worst news a family could receve. many people dont know, but 98% of autism cases occur in boys and 2% in girls. one of my daily struggles is having to deal with the constant worry, intimidation, fear, and thoughts about my brother. because he has autism not many people understand why he makes the strange noises or why he talks to himself under his breath. it bothers me how people think that just because i'm "normal" i dont have problems with the situation as well, but in my opinion, it sucks just as much. the main point of this blog is for support. one of my teachers and i have been working very hard to find a group that helps support teen's with siblings with autism. well the search isnt going so well so if no one else will help i will just help myself. feel free to ask any questions and i will do the same. (: