Wednesday, January 25, 2017

Jumbled Up Thoughts

Trying to find the words to write this while hoping I don't cry in the process. My thoughts are all jumbled up so this might be a hard one to read and you will probably need tissues. This is a long post. 

*Note: this is not to be a political argument or about politics. If you see it that way fine that's your opinion. If any of it is in the comments (either on here or on our Facebook) they will be deleted. *

Since 2015, I've been thinking about this off and on. In 2015, I went to an awesome Siblings Conference in Baltimore, MD. I had a blast, met new people and learned how to be very aware of things for my sibling that I didn't know before. After that I knew what I had to do and what I could do for Scott. To be honest, I got really scared. Heck I still am somewhat scared even though I try not to think about it.

Let's be real here. My parents aren't gonna live forever. Even though I wish they could it's not possible. They have provided my siblings and I the best life that they can and there doing one heck of a job. But what happens when they are no longer here? I've heard the stories of people having siblings in group homes and I've personally seen what some have done. I told myself awhile ago that I would do everything in my power to not put my brother in a group home. I wasn't going to do that to him. No way. Every time I think about the subject it makes me even more nervous for the future. How was my sister and I going to take care of him?

I'm just scared.

To be honest. I am going to be a Physical Educator one day and well it doesn't pay very much. I love teaching and that's why I and most teachers do it. I want to get my PhD so people can call me Dr. Okay, there's more to why I want to become a Dr. I love learning and I want to learn, but some part of me is saying if you have your doctorate you can make more money, have a better job and be financially stable. Another part of me is saying, "Get your PhD so when the time comes you'll own a house where Scott can live with you or at least near you. He will be dependent on you one day.
" One day it will happen.

Around this time last year I wrote a little note that I have been scared to share, but I feel like it should be.
I have this fear. It's been in the back of my mind for awhile now and I can't stop thinking about it once in a while. In life I love kids. Don't get me wrong I would love to have kids. The one thing that sticks in the back of my mind is if one of my children has Autism or a disability. That's why I'm kind of scared. Not so that if I could handle it or not but if my husband will be. This will be a completely new situation for him. Who knows how they will take it. Also, I know what it takes to be a sibling. You have to grow up faster than other kids in someways. You see things that other families don't see. If you aren't a sibling you don't understand what I mean, but that's another thing: Not everyone will understand. 
 My other fear is how my boyfriend/husband will treat my brother. Will he open his arms and let him in or will he not like him. It's a determine factor in our relationship. I need to know that they are willing to try because one day you might not know what will happen. 
Another thing I worry about is my brother. What will happen when our parents are gone. How will my sister and I handle this? How will affect my own family? I love my brother to death and would never want to see him in a bad place. I won't let that happen. 
As I grow older I wonder what life will be like. I know that somehow life works out, but for now in the back of my mind. I'm scared. I feel like I'm running through a dark tunnel that I will never be able to escape. Even if I were to escape there will be every road block imaginable. I'm ready for the challenge when it arises but in the back of my mind I'll always be afraid. 

I want to support my brother just like my parents do. I love him and my sister so much and I would do anything for them.

One thing I love about the disabled community is the siblings. We've all been through something in our lives that can relate to someone else and help them. I stay connected with all my friends I've made through the Siblings Leadership Network and through that conference.

These next four years are somewhat scaring me even more. People are determining things without even being in my shoes. It's one thing to be with a person with a disability for 8 hours a day like a teacher or to be a sibling. You haven't been through the meltdowns, the times my brother has ran out of school or our house and you haven't seen the accomplishments my brother has been through. What is going to happen to the disabled community in the next four years and beyond? I don't know. All I know is that I will fight for every person with a disability in this country. Trust me. 



Thank you for reading this. I am now going to eat some of the cake I made for Scott's birthday. 

Monday, October 31, 2016

Far away from home.

Life just gets in the way sometimes. I started graduate school and moved about 3 and a half hours from my sibling. Before I left for grad school, Scott and I had a talk in the car on what grad school means and why I would be leaving again. It hurt my heart and I almost cried talking to him about it, but it's something that had to be talked about.

I've been here in West Virginia for a little over two months and Scott has gotten to visit once for a few hours to bring me my stuff. He liked Morgantown but he told me that he couldn't live with me and that he needed to go back home. I'm just glad that he came to visit.

videoEver since we were little Scott has been afraid of dogs. Since we got Penny, Scott has been better with dogs. For my birthday, Laura got me an amazing dog named Suzan. She is an older dog and much calmer than Penny. Before Scott had formally met Suzan we would facetime so he could see her and talk to her (even though she's deaf.. I don't think Scott has gotten that yet). He finally got to meet her a couple weekends ago. When they first met Suzan barked at him (which she's never done at someone). Which he didn't like the barking, but when they reunited again after he had put his stuff away Suzan had changed her mind about him. She even smelled his feet which he thought was funny. I hope that they will be friends.

He also liked that I bought her a red collar. He thinks she's a caps fan because she's rocking the red but we all know she's a pens fan all the way. :) When I saw Scott he came up to me and gave me a hug and said, "Hi Amanda. I missed you too." He has never really done that before. It was the best hug I've had all semester. I think he is turning a corner with wanting to give me a hug and talking to me more.

Since Scott and I talk almost every day. We talk about his jobs. He always tells me "it's busy and that he's tired." Scott recently got on the ice with his favorite player, Alexander Ovechkin. I asked him if he showed him how to score and Scott said yes and laughed. He had lots of fun and it's a great time for all the players.

Monday, May 23, 2016

Weekend Life with Scott.

This weekend I got to spend it with my brother. Which I haven't gotten to do in a while and we had a great time.

After Relay on Saturday I spent the night at my parents and when I woke on Sunday all I heard was Scott telling my mom that it won't snow in Pennsylvania when they go.

For lunch I took my brother to PF Changs (if you know me it's my favorite place because a lot of their items are dairy free :) We tried the 2 person meal which came with soup, app, entree and desert. Scott and I ordered the egg drop soup (which I forgot has carrots and onions in it.) I truly thought Scott was going to pick all the those out but HE DIDN'T! I'm as surprised as you are. He said he liked the soup.

Next we had the lettuce wraps. (My personal favorite). It has a lot of stuff in it. I didn't think Scott would actually like it. He tried it and liked it! I was 2 for 2. :) He didn't pick anything out of that either. Then he got the Fried Rice (my favorite thing but it has milk in it) He ordered it without carrots, bean sports and onions, and he tried it and liked it.

I asked him if he would like to come back and he said yes. I think I found a winner! We talked about how mom put me into Relay Jail the day before and he laughed as hard as he could at that. He thought it was the funniest thing.

After that I took him to work. I went in with him to get some stuff. When he immediately got into the store he said hi to everyone and everyone was friendly with him. I got my stuff and before I left I said bye to Scott and he said, "Bye. Have a good day." It was great to see him in his element at work. I could have cried. Looking at where he was when he was younger to now it's amazing and I'm so proud of him. :)

I spent Sunday night at the house and in the morning I told Scott to text me when he got on the bus if I was gone before he left.Well I was home when he got on the bus. He said "Bye. Have a good day," and then he got on the bus. A couple minutes later I get a text that said "On bus."

Gotta love time with my brother.

Thursday, May 12, 2016

Thoughts in our Brain that will never go away..

Starting off this post with a throwback picture to 2007 to now. Who knows what we were thinking or what we thought life would be like 9 years later.

9 years later I'm on my way to help a student in the English class. When something completely out of the blue happens. One of my students needs to talk to me about something. As were on our walk they tell me that they are scared about when their older sibling goes off to college and what's gonna happen after they graduate college. The student and his family member is close in age like my brother and I.

It struck a nerve. I started tearing up. As they were talking to me about this I started to wonder if this is how my brother feels about when I went away for the first time to college or now when I'm leaving for graduate school. We talked about how things might change but there are always positive to a negative. I never know what to say. Is there a right thing to say?

I'm not gonna lie or sugar coat it. I think about the future with my siblings a lot more than I probably should right now. I think: What is life gonna be like in 9 years? What's gonna happen when we get older? and many other things. Somethings will never get out of our heads. It's like a broken record. It keeps going on and on and on. There's no way it will get out.

Recently there was an article in USA Today about securing a future with a child with Autism. It was very insightful and it nice to read.

When seeing my student talk about those things. I try to help as best as I could. I hope I had helped them in some way because today I learned it's okay to tell your feelings to other people that have been through it. They could say that one thing that helps us through another bump in the road.


Saturday, April 16, 2016

Update

So it's been a while since I've posted.

Scott and I have both been working a lot. Scott loves his jobs and going to school. He made blueberry donuts on Thursday. (no he didn't bring any home to share :( )

Softball season started this week and he is excited. Scott loves playing softball. They had their first game this today and he said it was a good game. I wanted to go but I am volunteering for track and field because Scott told me that I'm not allowed to volunteer for softball because it's boys only. He did say that I could come to his game next week but not for a long time. Whatever that means.

Earlier this month We got to go to Lake Placid to play hockey with the Cool Cats. Scott loved it and had a great time with his friends. He got to ride the bus and get to know everyone. He got his favorite seat the first row right behind the bus driver. He got to play with an A team from Colorado which was a cool experience. Although he did break his stick and it's all we heard about the rest of the weekend. It was a great weekend.

So, NHL Playoffs have started. Meaning that the Penguins/Capitals Rivalry will keep going since both are in the playoffs. We like to have fun with the rivalry since our house is split. Mom and I are Penguins, Scott and Laura are Capitals and Dad well... who knows who he roots for. We say Penny is a Penguins fan because she's from Pennsylvania. When we say that Scott says, "Mom I wasn't born in Pennsylvania so I'm not a Penguins fan."

Well tonight we are off to the Special Olympics Casino Night. We are excited because we get to dress up. Scott loves to dress up. Until next week.

Wednesday, December 2, 2015

Thank you

This is a letter I wrote recently to my mom and dad. Warning you will need tissues for this post. 

Dear Mom and Dad,

          I know I don't say this enough but. Thank you! Thank you for all you do. I know that I can be a pain in the butt sometimes but it's all out of love. I might not have realized things when you were teaching me a lesson right then and there but trust me I have learned. I have learned a lot from you two. Where do I start?

         Thank you for giving me two awesome siblings. Thank you for being my biggest supporter. Thank you for driving me to those 6 am games or giving up part of your holiday to take me to a tournament. Thank you for being the shoulder to cry on or listen to my rants no matter how stupid or long they are. Thank you for providing the best life for my siblings and I. You have taken the things you've been dealt and handled them to the best that you can. You never gave up on my siblings and I. You've always encouraged us to do our best and pushed us to try new things. You never told any of us kids that we couldn't do something. That if we set our mind to something you would always be behind us cheering us on. Even with my brother you told him that he could do anything he set his mind to.

         By working in the high school the past few weeks, I've been hearing that some people with disabilities have been told my their parents they can't do something because they have a disability. It breaks my heart because I know they can do whatever they put their mind to. With you, the words can't have never come out of your mouths. I can never thank you so much for doing that because I don't know who I would be without that.

        You believe in us. That means more to me than anything I can ever think of. You are the best parents a girl could ask for. I hope you know that. I love you guys.

         So, thank you for all you do for us.

-The Brawley Kids.

Saturday, November 14, 2015

Moments that you have to cherish.

Today my mom, brother and I went to get my mom and I's Iphone screen fixed. During that time we went to lunch and Scott picked Uncle Julio's. We all got tacos and they were great. When we were getting seated at our booth, I took one side and my mom took another. Now if you know my brother he would normally sit next to my mom... but today he sat next to me. This was a big surprise for me and my mom.  He would always avoid to sit next to me and I never knew why.. and still don't. I'm glad that he is coming around to sitting next to me.

When he talked to me he asked me if I was full and I liked my food. He told me that he was full too. Scott picked a good place to have lunch and I recommend Uncle Julio's.