Hockey Camp and the Start of School

One of the last things that we do during summer is go to hockey camp. Our hockey camp is week long, 9 to 4 and has two ice sessions. During the day we do off-ice drills, arts and crafts and having fun getting on the ice.

Scott, dad and I were in a van with a couple other of the players. We would go by these houses and the boys would say which house they liked or they would talk about football or hockey. After camp ended they were somewhat quieter and had the hockey stink badly. Phew! (Scott would probably laugh if you told him he smelled bad.)

One of the topics that came up during camp was how much the boys have grown over the years. The Cool Cats are in their 10th year and everyone has their own story about how they got started or their favorite memory about the Cool Cats. From seeing their kid touch the puck for the first time or them be more social or even how they learned about the team. Every one of those players has a different story that I love to see and it's inspirational to see how a lot of them have come.

When my brother started he was shy, was learning how to speak and to be more social. I have seen so much progress in him just from these past years. Scott will say hi to everyone and ask you your name. He won't tell you his name but he's getting there. When my mom was in Pennsylvania visiting family with my brother and my dad she told us that Grandma was kidding around with Scott about who gets the big fries. (Scott picks out all the big fries for himself and will scream NO if you say you are going to take the big fry) My mom was very happy that he learned how to communicate and that he loves to talk about everything.

Tomorrow, Scott starts his Senior year of high school. Yes, I said Senior year. I can't believe it either. Scott loves school and can't wait to be back. Now he has to get out of his PJ's. :)

STORY TIME: When Scott was younger he hated school. He would sit at the table and cry his eyes out when he had to do homework or had to read. It was the hardest and longest thing to get Scott to do his homework. Now Scott comes home and sits right down to do his homework. It is a complete 360 from what he used to be.

We hope that everyone has a great first day! Watch out for school buses. Hopefully we will get a picture of Scott before he heads off to school.

Milestones.

For Easter my family and my cousins spent the weekend in Hershey, PA. Home of the Hershey chocolate world. (even though some of us don't like chocolate) Scott and the family came to watch Amanda's last game being in the new-stars game.

Amanda got two assist during the game and was nominated for D1 Sportswoman of the Year.

BUT!
That's not the main reason for this post. So the title of this post is Milestones and here's one we can put in the book (when we write one).

My mom told me a story about before my cousins and I got to the rink. My dad, mom and Scott were out to lunch and my dad asked the waitress her name and then my dad said "This is Scott." Right after my dad said that Scott says, "Emily (I think that was her name) this is my mom."

Scott has never introduced one of us to another person. I'm so proud of him for introducing his momma to someone else. This is a HUGE Milestone for my baby brother!

Also, Softball is starting and I think that's Scott's favorite sport that he plays (besides Hockey of course). He loves hitting the ball over the fence and catching the ball. Well if you know Scott you know that he has more shoes than a girl. (You think we're kidding but we're not) Have you ever tried to find size 15 shoes? (Yes you read that right 15!) It's not that easy especially when Scott is picky about his shoes. One of the requirements is they have to be the color Red. (probably why he roots for the capitals.) Today Scott got his new Softball cleats & yes they are Red!

Here they are!











So WE HAVE A SPECIAL SHOUTOUT TO OUR BABY SISTER, LAURA WHO IS TURNING ANOTHER YEAR OLDER TOMORROW! 

I wish I could be there to celebrate at IHOP but I'll be home in two weeks to celebrate.

If you see this weirdo tell her happy birthday & give her a birthday punch for me. (just kidding don't do that. we don't condone violence :)

Not everyone will understand.

Here's your warning. You will need some tissues. I know I did. 

Over the years I've come to realize that not everyone will understand. From the time my brother and I were little to now it's gotten easier. We've learned how to deal with it. As a sibling of a person with a disability you want to help them in every way you can but there are some instances that you can't. For me it's hard hearing these stories and not being able to be there for my brother because of the distance. When my mom told me this story my friend and I immediately broke into tears.

Not everyone will understand why your kid screams at the top of his lungs in the middle of the restaurant when he looks old enough to talk. Not everyone will understand why your kid hits himself, flaps his arms or has ticks. Not everyone will understand why it takes him a couple minutes to answer your question, repeats the same thing over a couple of times and not know how to word their sentences.

Not everyone will understand. They just won't. Even if we educate them. They just won't understand. It's a whole different world living with someone with a disability. That they will probably never have a chance to see. That's one important lesson I learned.

When I was younger I used to hate to go out with my brother because his way of communicating was to scream. I remember one time we went out to dinner and my brother started screaming. A lady who was near us said to the person she was with, "Why can't they control their child?" Not knowing my brother had Autism. Not knowing that it was his way of communicating. Scott didn't start speaking until he was 8 and now he talks up a storm.

Scott and I got to go to high school for a couple of years together. I'm so grateful for going to Park View because a lot of the students accepted Scott. One day while I was in lunch I saw him walk by and give someone a high five, say hi and had the biggest smile on his face. He loves to give high fives and make people smile. That's what he's good at. You could have had the worst day ever and Scott would give you a high five and say hi.

This weekend my mom, my sister and brother came to Pennsylvania for our two cousin's baptisms. My brother is not known for crying but when he does he is upset or sad. At this time I could understand why he's upset. In the past two years we have lost our Aunt Barb and our grandpa. It's been a hard time for Scott to comprehend. It's been another hurdle we had to jump over. Not being in this situation before it was a rough one. I think he is starting to realizing that they are no longer with us. My mom had to pull Scott out of church so he could cry and well.. Here's how my mom put it.

My family and I have never been really religious because my brother couldn't sit through a church service.

Sometimes we just need to cry and if I was there with my brother I would have probably cried with him. It's hard seeing all the pictures that they took and not seeing my aunt or my grandpa. I will admit. I can't imagine what is going through Scott's head. It breaks my heart seeing and hearing that he was crying and not really knowing how to put the words into terms that he can understand.

Sometimes people just don't understand & probably never will even if we do educate them.

I need your help.

I know I haven't been able to post in a while. Senior year is rough. (yes I said Senior year. Hard to believe)

Something that been going on. Scott loves being around our dog Penny and is really comfortable with her.

Scott has been up to see me at school a couple of times to see me play hockey. Before the last game he saw I asked him if I would score a goal that night against the University of Maryland. Scott looked at me and said, "Yes you will score. One goal."Then guess what happened. I SCORED! My second goal of the season.
The next day I asked him the same question and he said, " 3 goals." then did a little laugh. It didn't work that day..

I'm so glad that my family is coming to see most of my games and my dad all of them.

I do have a favor to my followers. I am trying to do a Panel. The panel would consist of people who have sibling with disabilities. We would meet once (maybe twice) at a library (starting in loudoun county) to whoever wanted come to learn more about having a sibling with a disability. All ages are welcomed. I am just starting to set this up and I would need people to be on the panel and people who could get the word out. If you would like to help me out in any way. Please let me know. I am also open to ideas to make it better.

If I didn't go to a panel when I was little I wouldn't have learned about having a sibling with a disability. So I want to give back. My goal one day is to have this going around the United States (any maybe other countries) but you have to start somewhere.

Thanks everyone! I hope everyone had a great Holidays!

Doing Big Things In Small Places.

This is your warning that you might need some tissues for this post.

One thing I love doing is telling people my experiences with my brother and how he's really grown from when he used to be a runner to now being so friendly to everyone. I was recently talking to a friend about my brother and how he has Autism. The one thing we said was "I'm sorry." I was really confused on why he would say that. Probably because he doesn't know the experiences we've been through and what life is like living with a person with a disability.

Looking back. A lot of things have happened with my brother. At the beginning I didn't want to go out with him because he would just scream but that would his way of communicating. I never understood why he did the things that he did. I told my friend that it was an experience that I'm really glad that I've had a chance to have. To be honest I don't know who I would be or what I would be doing with my life if I didn't have my little brother. We've been through every thing and every where. I've met so many people who I wouldn't have the chance to if I wasn't involved in Special Olympics and Special Hockey.

I do always wonder what my brother is thinking. How he can know every little detail that you and I can't see. It's amazing. He can even tell you what car is coming from them coming opposite way and in the pitch dark. I do miss those days where my brother was on the bench saying "do not let them score!" It still plays in my mind every time I put on my jersey.

I love hearing my brother over the phone. Whenever I'm having a day just hearing about his day even if he only talks to me for a couple seconds I love it. He always says, "Gotta go. Love you too. Bye." then hands the phone to whoever before I can even say it back.

My friend also asked me what my brother would be doing after high school. That will be a new experience that we will have to see. It's another curve in life that I truly don't have the answer to. Only time will tell what will happen.. Scott keeps telling everyone that he is going to marry a girl named Michelle and have three kids (he has names for them but they keep changing.) and when he's 65 he's going to move to Tampa, Florida near his best friend John. I really hope that one day it will happen.

One experience I think I would have never had without having my brother is being the Delaware Valley Collegiate Hockey Conference (DVCHC) Special Hockey Liaison. What that means is I'm the middle man for the teams and the special hockey teams. It's a great way to get the players out in the community and I'm really excited to get to do this my senior year of college. A lot of the girls are really excited to do it.

Our first Special Hockey/DVCHC partnership will be a meet-n-greet before the Slippery Rock at The Naval Academy. More details will come soon. :) I can't wait to see my Cool Cats if some of them come.

So watch out world, Scott and I are taking it by storm.

It's been awhile since I've posted....

I will admit it has been since Jan when I last posted... Life just has been hectic. I didn't come home at all  for spring semester because I went to Ireland for spring break. Scott was in the hospital for his appendix. It was a scary time for him because he doesn't do well in hospitals and especially needles. He surprised all of us and started to feel comfortable with the hospital and the needles. It was a scary 3 weeks for all of us.

We've been in hockey camp all week and today Scott surprised me yet again. One of my friends from the rink, Jesca, has always said hi to my brother. My brother has always asked about her two brothers and our other friend but not about how Jesca is and after that he would be done talking to her.
Well, this time Scott kept talking to Jesca after asking about everyone else. Which he has never done. It made me tear up to hear that he is having a longer conversations with her.

One day we will get him to ask how she is with everyone else he asks.
We had a fun week at hockey camp. We can't wait for next year.

What would you like to be when you grow up?

Almost every elementary school teacher make their students do an activity where the students color and write what they want to do when they grow up. At the time most of the students say an astronaut or a famous sports star, but that normally changes when they grow up and start to figure out who they are. Or they could be like me and grow up think they know what they want to do, but get into college and change their major 3 times before they finally find the right one.

I was thinking about this when my brother & I went to pick up our friend Michael from the hospital where he volunteers at. He delivers packages to the different departments. Every time I pick him up I always ask him how was his day and I have never heard anything other than, "Marvelous." He loves this job. It got me thinking.

After going to bowling with Michael and taking him home, Scott, and I saw some construction workers working on the road. I asked Scott if he would like to be a construction worker. He said, "No I can't do that." I then said, "Well, what would you like to be when you grow up?" Scott's answer (which doesn't surprise me at all) was that he wants to work at Advanced Auto Parts as a cashier. I asked if he would want to stock the shelfs too. He told me he could do that.

Sometimes I just wonder what he will do when he gets out of high school. I hope that one day he could work at Advanced Auto Parts like he really wants to. I know that he can do it & only time will tell. He still has sometime left in high school. I wonder what will happen when he doesn't have to go to school anymore. How he will handle that because he loves school.

ASHA Hockey Camp & Battle of the Golden Helmet.

This past week has been crazy (in a great way) Scott, Coach Randy & I headed up to Maryland to go to the ASHA (American Special Hockey Association) Southeast District camp. We rode up to camp with Bowen, David, Steven & Brandon. Let me tell you it was a fun car ride.

While at camp we were on the ice a little over two hours a day. Then lunch and down time at the rink they melt down to make into a roller rink for the summer camps. This week we learned a lot about each other. A lot of the kids who never really talked before were talking up a storm and it was great to hear what they had to say.

Coach Randy made the kids work hard and all of them were tired after each day.  This picture will probably tell you how much we tired them out. On Day 4: 4 kids are down for the count & let me tell you I was right there with them.
 

I didn't want to leave these kids. Today felt so weird not waking up early & putting on my skates to be on the ice with them. I can't wait to see all these kids again at christmas time for the tournament. I probably won't recognize any of them they will be so fast or talkative. This week made me realize that this is what I want to do with my life. I love these guys like they are my brothers and sisters & I wouldn't change it for the world. I really don't know what I would be doing with my life if I have never met every. I <3 you all.

In the next post I'll post some more pictures of the week and some videos we took. Yes, the one of me singing the Itsy Bitsy Spider & of the one the kids are pushing coach Randy in Wesley's chair.

After that whole week of camp we had one last thing. The battle of the Golden Helmet.  Scott's team the Rangers Won. Scott did amazing he had a triple and two doubles. He almost hit over the fence twice. It was a great game to watch by all of his teammates. Then after that we had a picnic with Scott's favorite. Hamburgers and Hot dogs. He also met a new friend who he took pictures with.

Fewwwww. I think it's bed time now. Another Sunday of Hockey for the Cool Cats. (:

Peace & Love,
Amanda & Scott.

Scott is worse than a girl.

Hey guys.
I hope everyone is having an awesome summer. Here at our house were just hanging out.
Over the weekend since it was tax free weekend we went school supply shopping and jeans shopping. While Laura & I got what we needed for school, Scott got his Zigs shoes.
Scott is very picky about his shoes. We were trying to convince him to get the black with blue ones but he had his heart & his mind set on the green & black ones. I swear sometimes he's worse then us girls. When we were getting his shoes the sales guy gave us a strange look when we said that we needed at size 15 shoe. The sales person said, "We have size 14." They wouldn't fit Scott's big foot.(:

Right now were watching Scott's favorite show Wipeout & seeing what music we can put on his computer so he can listen to it. When I asked him if he liked Demi Lovato he said Wrong.
Here's his list so far of artist:

• Maroon 5
• Daughtry
• Justin Beiber (ew)
• Gwen Stefani
• Britney Spears
• Pink
• Michelle Branch
• Kelly Clarkson
• Black eyed peas.
• P. Diddy
• Taylor Swift
• Citizen Cope
• The Script
• One Republic
• Plain whit T's
• Rihanna
• Michael Franti & Spearhead
• Jason Marz
• Taio Cruz
• Ke$ha
• Sean Kingston
• 3 doors down
• Avril Lavigne
• Katy Perry
• Liz Phair
• Vanessa Carlton
• Enrique Inglesias
• Daniel Powter

& knowing him there's a whole lot more.

Scott & I are doing a new thing. We want to hear about your stories or quotes.
An example would be when the guy I caregive for came down the stairs before going to the pool without a shirt on then looked at me & said, "Amanda don't look at me I'm naked." even though he had his bathing suit on.
Like/Message us on facebook @ Siblings With Autism Blog or Tweet us @Autism_Blog66
let's have fun with this. (:

Peace & Love,
Amanda & Scott's

Wow is it really August?

Hey guys.
Wow I can't believe it's August. There are many activities planned in the Brawley household. From doctors appointments, Going to Slippery Rock for me & Scott going to Chicago for Softball.
I had written down on the calendar when we were going to my grandparents house before leaving for Slippery Rock. For a while Scott has been saying these two things:
"Mom, How's Amanda?"
&
"Mom. August 24 Amanda moves to PA. I'm not moving to PA. I stay in Virginia with Laura."
I think if my mom hears that one more time she might scream.
He really hasn't said about going to Chicago for softbal;.

On Monday Scott & Johnny did there yearly activity of going to the water park. He really didn't talk about it that much but it seemed like he had fun.
On Tuesday I had to go to the knee doctor & ended up getting a shot. When I got home my mom told Scott that I got a shot & he screamed. "MOM I ONLY GO TO THE DOCTORS FOR CHECK UPS. NO SHOTS!!"
he really doesn't like shots.

Peace & Love,
Amanda & Scott