siblings on the spectrum
My name is Katie. I have a 10 year old brother with autism. I see how he struggles on a day to day basis and everyone else can too. What people dont see is the struggle that the siblings face too. Support is one thing that the siblings need and this blog is here for that purpose. (:
Sunday, September 18, 2011
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?
Thursday, August 18, 2011
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.
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.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reservedEmily Perl Kingsley.
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.
Saturday, August 13, 2011
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.
Thursday, August 11, 2011
Saturday, July 30, 2011
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 (:
Tuesday, July 19, 2011
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. (:
Friday, July 15, 2011
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 (:
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