National Siblings Day

   Happy National Siblings Day! Between Down Syndrome Awareness Day, Autism Awareness Day, and National Siblings Day this has been a pretty eventful month! Though my brothers and I have not convinced my parents the NSD is gift worthy it has been fun spending time with my family this weekend. In fact we took Robb to the movie theater yesterday to see Batman v. Superman. I think the last time he was at the movie theater might have been before he had autism, so he clearly deserved a trip there. Though none of us could really follow the complex plot Robb loved the loud action scenes! I hope everyone has a happy National Siblings Day spent with their siblings and/or other loved ones!

Autism Awareness Day

   Happy Autism Awareness Day! Today I was happy to see that many people were spreading awareness! When visiting JHU I saw a poster on ending the r-word, something many people with autism fall victim to (posted below). This evening was also fun because Baltimore was having a light show with lots of music and lights (as you can imagine) which Robb especially loved! When leaving my family was pleased to see the city hall light up blue in honor of Autism Awareness Day! It feels good to see everyone come together to raise awareness and hopefully it will continue for the rest of the month!

This April Second is Autism Awareness Day! Wear blue to show your support!

World Down Syndrome Day

     Today is World Down Syndrome Day! But before I get to all of the fun photos I post every year I want to share a post from Ellen Stumbo's blog, a mother of two kids with special needs (one of them has down syndrome :) ). Her post "When A Stranger Thought I Was Disabled." She talks about a time when a stranger working at her daughters' school thought she had special needs. It really shows the discrimination people with special needs face every day, and from a personal point of view. Now for the photos...

Special Olympics 2016

    Robb's training for the Special Olympics swimming competition in june has started again, and I (once I finish the paperwork) am officially a coach for his team, the dolphins! This year the goal will be getting Robb to swim alone, and the start has been great! When it comes to the deep end he is completely independent, but he has not been able to resist walking in the shallow end. Swimming with Robb in a bigger pool than I am used to I cannot blame him. It has given me a whole new respect for the swimmers and other coaches! After one lap I am ready for a nap, and Robb just smiles at me and starts the next one! Doing this with Robb has not only made me closer to him, but also to the whole team, and I am excited for the year to come!

"Disabled"

  In one of my previous posts I discussed the word disabled, and the inaccurate meaning behind it. People often say they disable something to make it stop working. People might disable an alarm clock, so it will not wake them up, or a store out of business might disable their website, so it cannot be activated. The fact that this word can also be talking about a person with special needs especially my brother, and is just irritating for me almost comical because it is wrong. Robb is not a machine that stopped working, or the website of a business failure. Robb is not broken. From now on when I see this word I want to show people my side because I do not want people's first thought to be when seeing Robb is that he is disabled. He may need special assistance, have special needs that have  to be accounted for, but he is a person, not a malfunction. From now on I want to stand up for the truth and show people my side. On my blog I will be starting a slide show of writing I have corrected because my brother will not be marked off as disabled or ordinary, just different, extraordinary.

The Hardest Thing

      "What is the hardest thing about having a sibling with special needs?".  I came across this question when preparing for a sibling panel.  Most people think that I should have a plethora of choices. They think that getting embarrassed at the supermarket would be the worst, but I have always felt like a movie star. They think that I miss out on hanging out with my friends if I need to watch Robb, or he has a therapist, yet they lack all of the doors Robb has opened up for me. I think people need to understand that having a sibling with special needs is not a hardship, but it is different.
      It really has never been hard on me, though, but I have always felt it must be extremely hard on him.  He cannot communicate, he gets frustrated often, and this really kills me because I just want him to be happy. Robb can find ways around communication, and he is smart, but I am afraid he will never feel self fulfillment. I always think self fulfillment is essential to happiness. I do not think I will ever be able to fully accept the fact he may never be completely fulfilled in himself. He will probably never get a job, never get married, and always be dependent on other people for the rest of his life.
      I just keep reminding myself, though, that my one hundred steps in this world could be his one step, but that one step will probably be even more fulfilling than my thousand steps. What really breaks my heart, and is truly unbearable for me is that he will probably never be able to live up to his full potential. Robb can live a fulfilling life, but I know he can do so much more that the world will let him. It breaks my heart that because people marking him off as a "retard" and moving along keeps him from sharing his full potential with the world. Robb may have a very loving environment, and he is very good about brushing off the haters, but until the world can try a little harder to listen, his voice may only be heard by a few, and trust me. That is a voice needs to be heard. Above autism, above Down Syndrome, but with sight because when you rise above your differences everything becomes clear.

Student Council Representative

   Robb was elected the student council representative of his class! Though my family is not really sure what it means, we are all very pleased (especially Robb). It is fun because my younger brother and I have also been members of the student council, and it goes to show that though Robb may have extra challenges when facing our civilization, we can still share goals.

Bracelets

  Robb has never really liked wearing things on his wrists, but ever since he put on the bracelet he made at school he has not taken it off. I think it might be because he likes the sensory input he gets from the beads, or maybe he is just very much in the Christmas spirit this year (the bracelet is red and green, Christmas colors), but whatever it is he is very pleased with his new fashion article!

Robb's 16'th Birthday!

Yesterday, along with New Years Eve, was Robb's 16'th Birthday! My grandmother is from Norway, and they have a tradition that you wake up the birthday boy/girl with breakfast, presents, and a special version of Happy Birthday. Unfortunately Robb was the first person to wake up in my family, so we brought the breakfast to the living room. I got Robb a fun straw which he was very pleased with:). We then went to the park which Robb loves, and the playground and swing were lots of fun for all of us! To end the day we had a New Years/Birthday Party Celebration to bring in the New Year, and Robb loved the music and good energy. I think that this will be a great 2016'th year(see what I did there:) )!

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.