Robb's Birthday

     Tomorrow is one of my favorite days of the year because I not only get to celebrate the closing of one year and entry into another, but also Robb's entry into a new age, his birthday! I got him a funny Ketchup Lover's T-shirt and a custom swinging towel (he likes to swing around washcloths). Giving Robb a gift he likes is one of the best feelings because I can see the appreciation and happiness on his face, and I feel pretty confident he will be happy with both of these gifts. This year is Robb's 17th birthday, so a year from now he is going to become a legal adult. Though this causes me great nervousness along with excitement with many unanswered questions about what this will mean for Robb's life, right now I am going to focus on making Robb's year great. 

With this focus in mind, I urge everyone to make a New Year's resolution: Don't judge a person because they have different abilities. Instead, let them shape the person you are going to become. Every day Robb has made me a better person, and I know he will continue to inspire people in 2017.

Honor Role

This week Robb got his report card, and he made honor roll for the first semester! A semester for Robb is from July to November, so I think after all this hard work it is going to be nice to have a break!

Thank you for reading, I hope you Holidays are bright!

Thanksgiving 2016

    This years  my family was lucky enough to celebrate two thanksgiving  dinners. One with close family and friends in which we  got to catch up with distant relatives we only see on this holiday, but the other dinner, shared with people I may never even meet, was extremely special to my whole family. It was spent at Robb's school, Saint Elizabeth's. I do not think I have ever seen such a joyous Thanksgiving celebration, and seeing Robb's face light up as we entered his school still makes me smile. Robb has always shown me the importance of appreciating both the big and little things in life,  but thanksgiving is a good reminder for me to express my gratitude, so I would like to end this post by saying thank you. Thank you for reading my blog, thank you for listening, and thank you for letting me give a voice to my brother who will never cease to amaze me.

ASA Race

       A couple of weekends ago I was able to attend one of Robb's Athletes Serving Athletes races. In the races, Robb gets to participate in a 5K while getting pushed by a runner. I have always been a little skeptical of these races just because I feel Robb could do some running as opposed to just sitting there while the volunteers do all the work, but I still loved attending the race! It was so much fun to see everyone so excited to be there and cheering Robb on as he crossed the finish line still makes me smile. At a time when there is so much division around us, it felt good to be surrounded by a group of people all working together to make such a fun event. My parents were so inspired that they have decided we are all going to run it next year, but after spending the fall of my freshman year in Cross Country, I am a little reluctant to be out of breath while Robb just looks at me like "run faster." Instead, I hope to get Robb to run some of the race next year, so we can run across the finish line together!

I think the highlight of the race was seeing Robb meet two Ravens cheerleaders after the race.
He not only gave them a big aaaahhh, but also a very enthusiastic happy dance:)

Buddy Walk 2016

 A couple of weeks ago my family participated in the CDSPG's annual buddy walk in celebration of national Down Syndrome awareness month. We have never really been very involved in the Down Syndrome community because since Robb has autism, he has always been different from many of the people we knew with Down Syndrome. It is a very loving, kind environment, but we found our own groups, and though I can never say I have meet anyone quite like Robb, the people in our groups faced similar communication challenges to Robb. Anyway, this year we decided to give the buddy walk a try, and I can honestly say it was a super fun experience. We all put on matching t-shirts, and walked around the Baltimore inner harbor. Robb was so happy, he got blue and yellow flags to wave around, and he and I danced along to 'Piano Man' one of my favorite songs. Everything was so comfortable, and I did not feel self conscious even though my family must have looked ridiculous in our matching t-shirts. There are not many things my entire family enjoys, and between the free donuts, music, and the ride, my parents, siblings, and I had a lot of fun.

Down Syndrome Awareness Month

          Happy Down Syndrome Awareness Month! Just as a refresher, Down Syndrome occurs when someone has an extra chromosome 21 or part of an one, but Robb in addition to having been born with Down Syndrome, was diagnosed with autism at the age of three. After being diagnosed with autism, my family did not participate in many events for DS awareness because though the community was amazing to be a part of, we were more involved with the autism community. Many of the people Robb went to school with had autism, and most of the people that worked with him were involved in the autism community. We want to be a part of both groups, though, and we are planning to go to more DS awareness events. I am happy to say that my blog will also get to help raise awareness for DS.
          In Baltimore, the Chesapeake Down Syndrome Parent Group has 31 4 21 blog for the month of october with a post written by a member of the Baltimore community about their experiences in the Down Syndrome Community. One of my posts will be a part of this, and I hope that I will be able to help spread awareness about DS and help end the discrimination my brother and many other's face everyday due to their DS. Please subscribe to 31 4 21 here, and have a great October filled with yellow and blue.

A Life Worth Living

         Over the summer, 19 people with special needs were brutally murdered and 26 injured in a facility outside of Tokyo. Some of the people killed were 70 and some 18, just two years older than Robb. The murderer had worked at the facility, and after he killed them he turned himself in saying, 'It would be better if disabled people were dead.' When I first saw this I did not know what to think, let alone what to write. It is so full of hatred, that all I can think is the person who said it should be behind bars. Because of my brother, and all of the people I know with special needs, this hateful phrase takes on a new meaning for me. Look at this phrase again, but replace 'disabled people' with children, siblings, friends, athletes, artists, teachers, students, humans, brothers. It brings me to tears thinking that someone might wish either of my brothers dead or any of my friends and family dead, with special needs or without. This man doesn't look at people with special needs as equals, instead he acts as if they are less than that, as if--because they may see the world differently, have more challenges or special needs--they have no value and they can't live a life worth living.
       
A life worth living.                This is a phrase that I have always been afraid to write about because many people would agree with this man, they would agree that people with special needs would not have a life worth living. If that is the case, though, what is a life worth living? Going to college, getting married, getting a job, maybe having some kids, retiring, and the inevitable death at the end of it all? If that is a life worth living than I know of many people with special needs who have checked the boxes, completed the list, done what is supposed to be done. I understand that when people say persons with special needs do not have a life worth living, they do not mean all people with special needs, but they specifically refer to the people who might be in community living, have needs that make them forever dependent on others, people like my brother. For some reason people think that going into community living makes life not worthwhile, but why? If that is the case, why do we have places like boarding school, colleges, even retirement communities where community living is praised, even sought after. After all, people with special needs living in communities together are not just staring at walls the whole day;many get jobs in their larger communities. Possibly their jobs in service or recreation may seem small, but they often have a big impact on the community. Why do we value the jobs of those with special needs less than those of someone who, for example, manages wealthy people's money or someone who created toy that became popular by luck, when these jobs don't even contribute to society as much? Because these people get paid more?

              But something tells me that no one is actually talking about jobs when one says people with special needs do not have a life worth living. They seem to think the things they do are meaningless when many times they are the same things we all do. They will spend time with friends in their community, or friends and family that come and visit. They do things they enjoy like everyone does, like Special Olympics where people go to do anything from swimming like Robb to singing. But I am sure many people still do not think it is a life worth living even though it is a full one. Many of you are probably stuck on that one thing people like my brother might not have to much of, independence. For you, all I have to say is that no one is completely independent. If you have to go through life all on your own...then you clearly have not looked around. There will always be people there for you, and though some need more people there for them than others, none of us are alone. Also, independence is relative. My brother is independent when he uses the bathroom on his own, changes by himself, and every day he becomes more and more independent. Also, even people who cannot move without help have independent thoughts and ideas. No one can take internal independence away from another.

              There is one thing that is needed to live a worthwhile life, though, something that cannot be disputed. It may sound silly, but I would like to quote John Lennon, "The key to life is happiness." If you can find happiness, your life is worth living. It will never be found everywhere, and you may not be happy about your amount of independence, your job, your living situation, but if you can have that moment where you can't help but smile I believe you have achieved a life worth living. If any of you could look at my brother when he is doing one of his low belly laughs, tell me that he should be dead because his life isn't worth living, I'm afraid you haven't heard: Life was never meant to be easy, but as soon as you are happy it is worth it, every second.


As seen on: http://www.cdspg.org/31-for-21-baltimore/2016/10/4/a-life-worth-living

Therapist shot while trying to help patient with autism

         Many of you have probably heard about a police shooting an unarmed therapist in the leg while he was trying to help his patient with special needs. The victim still lives, fortunately, but the patient has faced serious trauma. When seeing security guards Arnaldo, the adult patient with autism, raised his arms to show he had no weapons. His mother states, "His injuries are long-lasting injuries because he doesn't have a method in which to heal." Arnaldo had been sitting in the street playing with his toy truck while his therapist, Kinsey, was trying to calm him. When the police came up he lay down on his back, attempting to explain Arnaldo did not have a weapon. Then, after being shot in the leg multiple times, the police officers handcuffed both him and his patient.
         When thought to be a crime that occurred on account of Kinsey's race, the police officer said, that instead, he was trying to shoot the Arnaldo fearing he was trying to hurt the therapist, despite the fact that the latter was trying to explain Arnaldo was harmless. This not only shows he was not listening to the therapist, but also implies that the man with autism's life has less worth. Arnaldo's family attorney states, "To say that we didn't mean to shoot the African-American guy, we meant to shoot the guy with the 'disability' makes the person's life worth nothing." The police seemed to think it would be better to say he shot a man with special needs, when that would have been just as horrible. What matters in this case is not why the officer shot, but that someone was shot who had no reason to be. 
          It could have been Robb, who has sat in the street refusing to get up like Arnaldo before, and to think that him or any of his therapists who work so hard every day to help him could have been emotionally or physically injured makes me irate. Officers need to be trained to stop shooting people based on fear, and they need to think rationally and "assess the situation properly to make sure innocent people are not hurt." We cannot undo what happened, but we can learn from it, and we can hope if something like this happens again we will have a better outcome.

Special Olympics 2016 Games

        Last weekend Robb participated in the 2016 Special Olympics Games. He did one unassisted  race and one assisted race that I got to coach him in. For the first time in his Special Olympics a coach did not have to jump in to get him out of the pool in his unassisted, so even though he did walk a little in the shallow end, he managed to finish the race all on his own! He also managed to win the gold medal in his assisted swim race, and though he did not want to wear it very long, I think he was very pleased. I was also very happy to see they dedicated the pre-staging area to Tressie Shavers, a woman who died during her race last year, and the medal ceremony area was dedicated to another athlete.
      All and all this was a great season. I got to start coaching Robb, he swam the unassisted race without any help, and the whole team did great earning bronze, silver, and gold medals with very positive demeanors.

Temple Grandin

   

      In a CourSera course on autism I recently took, I watched some videos, including a HBO documentary, on Temple Grandin, and after watching them I think she is one of the most influential people in autism awareness. As a child Temple was diagnosed with autism, and her mother was told she should be institutionalized. Her mother refused and did everything she could to help Temple develop the skills that other children her age had. She was able to stay with her family throughout her childhood, but later boarded for high school for the best education she could get. While in high school, she had a science teacher who discovered she had a photographic memory that would lead to much of her success later in life. The summer before she went to college Temple visited her aunt's farm and became fascinated with cows. She then used her observations to create a revolutionary livestock handling equipment design that beef companies in America rely on today. She went on to receive her PhD in  animal science and is now one of the most famous adult with autism. She uses her fame to provide awareness to the autism community and tell people what it is like have autism. She has shown the world that people with autism are "different....not less."

Special Olympics Qualifiers

     Over the past couple of weekends Robb has been participating in Special Olympics qualifiers. In his first one he participated in an unassisted swim (an all deep pool) without getting disqualified! This is something Robb has been working on for a long time, and we are all so proud he finally accomplished it. The next qualifier was more of a big deal for me because it was the first time I was participating in a Special Olympics Qualifier with Robb, and I have to say it is fun swimming with Robb while everyone is cheering him on! In the last part of Special Olympics training we will try to accomplish our next big goal which is getting Robb to swim alone in the shallow end.

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:) )!