The Autism Spectrum

    Recently the autism spectrum has turned into a diagnosis to an insult. I heard someone the other day say that, "I think their on the autism spectrum". The people who are saying this are know nothing about autism, and what it is. They saw someone who they thought were ab-normal or annoying, and tried to makeup a reason. This is bullying and it needs to be stopped. Being on the autism spectrum is not a curse, but another outlook on life. Now people are not only being rude to people with autism by putting them in a weird and annoying category, but they are also being rude to people who they just do not like or are not used to. In a series that I have started watching, Scream Queens, the bullies call a girl who is a little quirky, autistic. This character responds by saying "Years before the Psychoanalytic Society of America decided there was money to be made by inventing what they call the 'the autism spectrum,' I would have been considered a daydreamer or quirky, like a young Zooey Deschanel. I'm not an idiot or a moron; I'm simply a victim of my times". Though autism is very real, and some people are very angry think that the autism spectrum is politically correct I think that it gives people a new outlook on autism. This shows that just because people are not perfect does not mean that you can label them. She is even saying that people in modern times with autism are labeled as idiots and morons when people with autism are anything but that.

Communication

  I feel that Robb can do so much more than what his therapists are doing with him. It is so repetitive he looks like he is miserable. He is not learning anything, but instead he is just pressing the same thing over and over again. I was sitting with him, and we played a game. I would sign to him "you love ketchup", and he would repeat. Then I would sign to him, "what do you love?", and he would sign back "ketchup".  I believe that things like this could greatly help Robb's communication skills because we can channel it, so he can say what he wants. While we were doing this I even taught him the signs for think and with, and I could tell that he loved communicating through sign. Communication is key, and I am hoping to show the therapists what I have been doing with him. Hopefully with the ASL lessons I have been taking through ASL University I can help him share his thoughts because he has earned it!

Shafer Palooza

  A couple weekends ago my family and I went to the SHAFER PALOOZA!!! :) Robb gets therapy from The Shafer Center, and every year they throw the Shafer Palooza. We have never been able to go until this year, and we had so much fun! Robb got to jump on the moon bounce, sell lemonade (all of the proceeds went to Autism Speaks), and dance to the music! Robb had a smile on his face the whole time, and we plan return next year!

When we need to take a selfie...

...and, of course, the duckface :)

"Standing up for someone"

  Considering the name of this post many of you are probably thinking that I am going to talk about why it is important to stand up for people with special needs, or how there is a positive affect on many people with special needs when you stand up for them, but even though those things are true I think this moment shows the true humor Robb has. My mother, Robb, and I were sitting down and relaxing while I was making fun of my mom about her inability to play squash. She, smiling as she thought of her past squash experiences and laughed, then she said to Robb, "Robb, stand up for me". Robb smiling at what my mom said, started moving from his seated position, and slowly he started standing up. He laughed and we knew why he had gotten up. He was just following our mom's orders, and he was standing up for her! He worked around his lack of speech, and he stood up for my mom in his own way recognizing the humor in doing so. I guess there is a lesson in this; always stand up for someone with special needs (or anyone in that matter) because they will very likely stand up for you. :)

Little Victories

 Happiness is very different when it comes to a family like mine, and victories are something simpler than ultimate perfection and success. For my family happiness comes in little bits from victories that show us, yeah, we can do this. Getting Robb through a full day without hitting his head, that is a victory. When Robb clears his plate by himself, that is a victory. Also, if he does not get it the first time, but try again and do succeed that is a victory because it shows that he cares enough to learn the skill. This has been one of the most important things that Robb has taught me because  when I get excited by the little victories I get less bogged down by things I might have not succeed in or that I maybe did not do very well in. Being in middle school this is especially important because there are so many failures and successes to be had, and by watching Robb I am able to be happy even if I am not always doing everything the way I would like to be. Robb shows that though the victories are golden the mistakes are not holding me down, they are giving me an opportunity to try again and that if it is really important to me I should be even more determined to try again. I hope you to can gain something from a common lessen to many that Robb really drives home and expresses in a new light.

Camp Huntington

Camp Huntington is the second place Robb has gone to camp, and may I say that it has exceeded my expectations! Camp Green-tops (Robb's old camp) was not working out, but because of that we were told about Camp Huntington where Robb gets one on one care, and they work with his IEP (Individual Education Program) so he can stay on track with his school work. They camp got him to get outside, and go swimming, go to the creek, even Zip-line! It got him out of his comfort zone, and when we went to pick him up, though he got right in the car, he did not seem so happy about leaving all of the fun! :)

Tressie Shavers

  In my last post I briefly mentioned a medical emergency that took place at the Maryland Special Olympics in June. Tressie Shavers experienced a medical emergency, and later passed away at Saint Joseph Hospital right before Robb was going to swim. This tragedy was kept very quiet, as the family does not want to bring a lot of attention to it, but right now money is being raised to help Mrs. Shaver's mother who relied heavily on her. Mrs. Shavers was able to live a full life despite having mobility problems, and she died doing something she loved making her a role model to me and many others and proving a good end to a worthwhile life.

Donate here: https://www.crowdrise.com/inhonoroftressieshavers

Special Olympics 2015

             (Robb with his coach)

Though this post is a little late I did not want to miss talking about this year's Specail Olympics! Though Robb would not get in the pool at first he eventually did, and did very well in the 25m and later the 10m assisted swim! Though we do not know if he placed due to a medical emergency, he finished through and had fun while doing it, and that is what really mattered!

      (Robb with his fellow teammate)

Robert Ethan Saylor

Robert Ethan Saylor

January 9, 1987, January 12, 2013

This post is in memory of Robert Ethan Saylor (goes by Ethan), a man with down-syndrome who was killed over a movie ticket. He went to the movie theater to see Zero Dark Thirty, and while his aid was going to get the car he stayed in the theater wanting to see the movie again. When asked by the assistant manager to leave and refusing, the assistant manager called 911. Three deputies came, put him on his stomach on the ground, and he died an hour later. I heard about this after the police brutality due to racism in Fredrick, Baltimore, New York, and other places. Why did I not hear about it sooner? I don't know, but I do know that this incident was not the first occurrence of police brutality to people with special needs, and as much as I hate to say it, this probably won't be the last incident. These incidents should have been more publicized, but now we have to look toward the future. Police brutality has to stop. I am posting this, though, because I want to remember Robert Ethan Saylor's life, not his death...

Ethan was born to Patti Richmond Saylor and Ron Saylor in Frederick, Maryland, and he has two siblings, Emma and Adam. He went to Spring Ridge Elementary, TJ Middle, and he graduated from The Benedictine School in Ridgely, Maryland. He loved learning about police, and music, especially Reggae. He was a member of the men's choir, at the Damascus Road Community Church, and he was well loved by the church community. He is lived on my his parents, siblings, extended family, and friends.

Special Olympics Qualifier (continued)

Here are the videos of Robb actually swimming in the Qualifier. He got off to a little bit of a bumpy start, but he finished strong making this race his first completed unassisted swim!

At Special Olympics qualifier!!!

the sign for autism

  


  If you take the pictures above and string them together you will get the sign for autism. I do not know and am not able to find why they choose this, but I have a theory. My theory is this, my brother is smart. I know that because I see it every day from the way he gets mad whenever we make a wrong turn on the way to school, or the way he picks things up and they throws them on the ground to get attention. He even pointed to my brothers name "Poe" in Edgar Allen Poe, a famous poet, when his name was written on the board. It was like he was saying "that's my brother's name!". Many people just believe that because he isn't able to express himself in the way this society expects people to he is stupid. You may be asking yourself, how does this have to do with the sign for autism? Think about it...is the sign for autism is like a wall going around the face, it is like a wall going around what is going on in Robb's mind. Robb is trapped in his mind in a way, not able to show his true knowledge, and not only that the letter that is making that wall, that is trapping him in the sign (the letter your hand makes) is an "a". A for autism. I am not saying autism traps him, but I am saying in the society we live in autism traps him. I hope someday this will change, but until then this is the world we have made. That is the sign for autism.

Current Events 4/4

What happened: Michael Kelley, a 19 year old kid with autism and down-syndrome, became an official member of the San Antonio Scorpions yesterday after Gordon Hartman heard of this boy's story. Michael had been wearing a letterman jacket as he was representing his school in a special needs sports league, and after a mother complained he hadn't deserved the jacket, it was removed by the staff. Hartman heard this, and not only flew him up to San Antonia to become a Scorpion, he also took him to visit Morgan's Wonderland a place Michael has wanted to go for some time!

Article: Kansas teen stripped of letterman jacket visits Morgan’s Wonderland

Reflection: I just can't believe anyone would say this boy didn't earn his jacket! This boy, as his mother said, had to overcome so many obstacles having both autism and down-syndrome, and the only thing that that woman did by taking his jacket from him is make the boy fell bad and bring him down. Hartman showed us the silver lining of this incident by bringing him to San Antonio, and he gave Michael something he truly deserved and earned.

Autism Awareness Day and Month

Today, the second of April is: Autism Awareness Day
This is the day is globally celebrated to raise awareness of autism everywhere!
So raise the blue flag, and let's solve the puzzle that is autism!

Special Olympics 2015

  Yes it's that time of year again, and it is great! For those of you who don't know, Special Olympics is like the Olympics for people with special needs, and they have athletes who are doing it for fun, and athletes who are competitive. Robb does swimming, and in June he will get to compete in assisted swim with other athletes from the area.
  This year has been great so far, and I have actually gotten the chance to swim with Robb! After doing this I feel I have met Robb in a whole new way, he is so much happier in the water. It is a place where he can relax and be himself. We are now a team in a way, trying hard to make it through each lap. I also feel the other athletes act more comfortable around me, like before I was just the sister of an athlete and now I am in the water with them, I am one of them. I am a member of the team.
   I am going to end this blog post with our cheer:

As a special Olympian what's your job?

To do our best

As a team mate what's your job?

To support each other

Everyday

in every way

we get better and better

go Dolphins!

Matty B.

   A lot of people who are reading this do and do not know Matty B, so let me tell you. Most people may know him for his covers of songs like Rude and Shake it off on youtube, but he also has a sister with Down-Syndrome who is in his video cover of True Colors! It is a video that his sister stars in where girls are mean to her, but one girl gives her a chance and really likes her showing it really only matters about the person on the inside, and I think the video is amazing! People watching it might think he is just doing it for publicity, but though that may be a factor, I know that he is doing it because he loves his sister, and he wants people to know the amazing person she is. He talks about how crazy it is that people judge this girl just because of her "DNA", and that they shouldn't judge someone based on their chemical makeup (something that they have no control over).  A dream many of us have is that people will, one day, not worry about differences and see people for who they really are. I am hoping this video makes an impact on people, and they start making this realization that MattyB has shown. I also hope people see this video, and think more than "oh she is cute", and instead see the video the way her brother wants you to see it. Most importantly though watch the video for the star, MattyB's sister Sarah, who is an amazing actor with and would be an amazing actor without Downs-Syndrome.

If your happy and you know it say ahh

The latest work of Astri and Robb.

Robb has always been musical, he sings "agh" and copies the beat while listening to some of our favorite types of music. (Bluegrass, The Wiggles, and Rock and Roll) Whenever he is angry it is the music that calms him down, and I believe music is one of the few things that gives us a glimpse into the world Robb lives in. This song we have been working on for a while (he has been worked especially hard on pitch)! Enjoy!

Robb Amazes Me

  I was playing with Robb just a little while ago, and I came up with this simple sentence: Robb Amazes Me.   From when he wakes up in the morning, to when he goes to sleep I am amazed by his way of life. He can spend hours being alone, and he will never be bored. He can swing around a towel and watch it all the movements fascination. You can tell when he is thinking because a million expressions go through him at once, and never have I ever seen him bored. I am also amazed that he has been able to go through life communicating with the little communication skills he has been taught. He rarely gets angry when he can't get his point across and looks for new ways to get the point across. Everyday he is able to make the best of, even though not many people (if any) understand him and who he is. Robb may not be able to communicate in what we consider a "normal" way to communicate, but he goes beyond that. He communicates through his world, and every moment I am with him I feel like I am glimpsing into a better world. The world I see from him is a much better place, and every day I want to see more of it, know more of it, though there is still so much I don't know about it, can't know about it, yet so much to find out. I may never understand it, but I will always love and accept it. I just want Robb to always be happy, (impossible as that might be) because I know that he is one person that would make the most of a happy life, or even just a happy hour, a single happy second. Robb amazes me.

Sibshops

  For those who like chess there is chess club, for those who enjoy a fandom there are clubs to go and talk about your fandom with other, for siblings with special needs there is sibships. Sibshops is an organization that lets siblings of kids with special needs hand out with each other, and talk about are siblings, and also do activities that give us a better understanding of how are siblings live their lives. I am part of a group of about seven people who started a sibshops about two years ago. I have not only made many friends, and learned about a bunch of different types of special needs making my understanding a little bit better, but I have also learned that I am not the only one. Not the only one who worries about what is going to happen to their sibling...not the only one who can be annoyed at all of the care their sibling needs....and not the only one who just wants the best for the sibling they love so much.

I am always excited to see my sibshops friends when we meed once a month!

Ableism?

  Today I was wondering...we have racism for discrimination against race, sexism for discrimination of gender, but what about for people with special needs? What is the word? I looked it up and it turns out the word is ableism. Ableism? My brother is many things, but he doesn't have less abilities than someone without special needs. He has to work a million times harder me and millions of others every day, and now people are saying it isn't ok to be mean to him because he has less abilities?! This is crazy!!!!! Then I thought about the term used for people with special needs...disabled? My brother has not disabled, if anything he is above abled. He works hard everyday to do things that many people take for granted, and this is what people think of him! Well I have decided to try and stop using these words...I have deleted them from all of my posts (but not this one), except for quotes and I plan to everyday stop the myth of people with special needs being "disabled"! I hope after reading this you will think twice about what is considered abled.

The Human Genome Project

   I really don't know much about the Human Genome Project, we just watched a video about it in school. I do think that the project could help find out what causes autism or what genetics cause autism though....I saw one person in the video take DNA samples from his patients with a muscle disease and found made major discoveries about all humans. If samples are taken from people with autism and without and then compared think of what we could find! What if autism could be in everyone, it just has to be turned on?!? (switches in the body will turn on or off different genes that could effect people in so many different ways) This is just a theory, but it fascinates me so much that it hasn't been tried....or it has been tried and the autistic community hasn't heard yet!!!! I want to be there and know right away when they have answered the questions I have always been asking! I hope sometime soon we will have this knowledge, and if not I plan to start doing my part to solve the puzzle!

Love

Robb and I have been learning new signs and we just learned the sign for "love"! Here it is......

(not a very good picture so here is a picture of the sign)

KEEN

For about a year now Robb has participated in KEEN, where he does, "controlled play" to help improve "socialization skills". I think that if Robb didn't love it so much I would think that it was a program where they treat the people with special needs like they are babies or act awkward around him. This is something my whole family hates, but here they play with Robb like they would with any kids his age. They are also very kind and every Sunday (when it takes place) they are amazed by his abilities!! As long as Robb is happy with it I am to, so keep your fingers crossed that it will always go as well as it has been going!