Independence at School

          Recently, Robb started to walk up to his classroom from the bus alone, and at the end of the day, walking back to the bus alone. While these transitions involve many people keeping an eye out for him, they are big step in Robb's independence. They show he understands where he is going everyday, and instead of getting distracted or getting upset without someone guiding him, he walks purposefully to the intended location. While he may always need people looking out for him, this could mean in the future walking to our house from the bus stop without someone waiting there for him, it could mean getting out of the car at Athletes Serving Athletes alone and coming back when it is over, or it could even mean starting a morning routine of brushing teeth and coming up stairs alone.  This may not seem like much, but this little step marks visible progress from the times when someone had to meet Robb and make sure he did not get distracted, and they show that there are possibilities for more independence in the next few years! Because communication has been a struggle, decreasing interdependence in some activities shows that Robb does understand the routine and daily tasks.
           For as well as I know Robb, so much of him is a mystery to me, and I often wish we lived in a different world where we would communicate through emotion and raw sound. It seems more fluid. But knowing that Robb will be able to gain independence in the world we live in gives me hope that he will get the fulfilling future he deserves by creating his own path without constantly relying on those around him.

Special Olympics Bowling

     A couple days ago, Robb started Special Olympics Bowling!! Though Robb had never bowled before, he really enjoyed his first practice. He changed into bowling shoes with a smile, and though he would rather throw the ball than roll it, he enjoyed watching the ball roll down and hit pins. I think the noise and excitement of bowling also added to Robb's chipper spirit, and he often contributed to the sounds around us with laughs and aaaahhh. One of the great things about bowling is that if Robb understands how to act in a bowling alley, my family will be able to go together. Also, it provides another activity for babysitters to go to with Robb. Unfortunately, all bowling has to be done without anyone helping during the meets, but maybe after a few years of practice, Robb will be able to compete! Until then, we will attend practices, and watch Robb improve one step at a time.

Being Away From Robb

          I have not seen Robb for almost a month because he has been at camp, and while on the one hand I am so glad he is at a place where he is happy and active, it is hard to be away from him for so long. Robb's large contribution to daily conversation becomes very apparent by the  hole he leaves when he is gone. It is hard to explain in writing, Robb's large presence in conversations, but I think the sounds he makes really impacts every conversation. Robb always gets riled up and will yell during arguments, and he will laugh at all the jokes. If people start to talk about Robb like he isn't there he will always let out an occasional aaa, and often when there is a lull in the conversations he will also say aaa. If something is irritating him, he will say mum, and often look towards my mom to fix it. Robb's voice and his sounds blend and combine with what everyone elses making Robb the life and rhythm of day to day life. Without him there is less life in what we say, and the emotions conveyed become dull. I wanted to do a post about Robb's absence as a reminder to myself and everyone that we should never take anything or anyone for granted. I feel so lucky to have my two brothers, and I am counting down the days until I get to see Robb again!

Gifts

Robb is one of the hardest people to buy gifts. He will always give you a smile when he opens something up, but to get him something he will actually use is near impossible. In the past, he was very prone to bad gifts since most of our family and friends did not really know him well enough to get him something. A lot of times people just got him squeaky toys. I think they were for dogs (our dogs liked them an awful lot), and despite the good intentions, the gifts always seemed more degrading than kind. Fortunately though, we have recently found the perfect gift for Robb that everyone can have fun getting him. Funny T-shirts! Robb always cracks up when he gets them, and T-shirts are his favorite thing to wear and swing around! In honor of the start of summer I wanted to share a couple of Robb's favorite t-shirts with you all!

Here Robb is pictured with his dad!

Swim Team

          Earlier this summer, my family went to see the documentary Swim Team which follows a Special Olympics swim team in New Jersey focusing on the lives of three swimmers in particular. These three swimmers (Mike, Kelvin, and Robert) are all on the autism spectrum, and Kelvin also has Tourette's syndrome. Tourette's syndrome usually consists of blurting out words involuntarily and tics. While all of the characters provided different and valuable perspectives into the lives of people with autism, the one I felt my family could most connect to was Kelvin. While Kelvin and Robb are very different people, they are both sometimes treated as outsiders by their Special Olympics team. His mom talks about how you think that the Special Olympics team is going to be okay with all differences, but sometimes certain differences can isolate members of the team.
          I think that this movie is a must see because despite the athletes' differences the movie makes them human. They become powerful protagonists who are funny, smart, and amazing swimmers. This shows viewers not to confine people with autism to that one characteristic. One of my goals from the start of this blog was to show people that my brother's identity does not end when I say he has special needs, but instead, it often expands in unique ways. Though I can make parallels between characters in the movie and relatives of my own, I want to emphasize the saying that "if you've met one person with autism, you've met one person with autism." Meaning, watching this movie does not make the viewer an autism expert, and autism can present itself in so many different ways.
          Another precaution before you watch this movie: In the movie, some parents say their son was never supposed to talk, but he can now speak because they worked at it. I hear this often, and it always stings a little because my parents worked so hard to help Robb learn to talk. (He could say some words before he had autism, but when he developed autism at three, he become non-verbal.) My mother did flashcards with him every morning, and he has had many speech therapists. And though he is still non-verbal, he tries so hard to make words, and often he makes noises that are so close to words. So just because these parents worked really hard and their son can now talk, does NOT mean that Robb's or my parents' lack of work is the reason Robb cannot talk.
          Check out http://www.swimteamthefilm.com to find a screening near you!

Finding the Right Words (Is there a right word?)

          A video came out on World Down Syndrome Day about the use of Special Needs discussing how the needs of people with Down Syndrome are not special (they need love, friends, and happiness like everyone else in the world), and therefore the term "special needs" should not be used. The video is really cool and features many famous actors with Down Syndrome. I highly recommend you check it out.
          I think I still will be using the word special needs as the primary word when I describe my brother or other people with special needs. Though I think this phrase is not ideal, "disability" feels like a word for a malfunction instead of a person to me.  I always thought that "special needs" was a good phrase because everyone has needs special to them, so the term "people with special needs" suggests these people are just being described using one aspect of the universal human experience.  Unfortunately the word also isolates in ways I had not considered before, and it has the same effect on some people as "disability" does on my family.
          Please contact me if you have any further questions on acceptable words, but honestly, I still have many questions myself on what the right word is.

Baltimore Hunger Project

Recently, Robb started volunteering at the Baltimore Hunger Project, and he was just named volunteer of the month! The leaders asked me to write something about Robb's experience, and they put together a great write up on him. Here it is:

APRIL VOLUNTEER OF THE MONTH ROBB DOUB

Baltimore Hunger Project is a volunteer-driven organization that provides weekend food packages to children living in food insecure households. April is both Volunteer Appreciation Month and Autism Awareness Month.  This month, we are proud to highlight the volunteer time and effort shared by Robb Doub as exemplified by his loyalty and commitment to the work he does for BHP. “We’ve always appreciated his willingness to help each Monday and his attention to detail,” said Lynne B. Kahn, BHP Executive Director. “However, when we received this letter from his sister telling us how important we are to him, we knew we had to say ‘thank you’ in a very public way.” BHP received this letter from Astri Doub, on Autism Awareness Day, April 2, 2017.

“My brother Robb is a 17-year-old student at St. Elizabeth’s School. He loves swimming, basketball, and he is an amazing dancer! Robb also has autism and Down Syndrome. Recently, Robb began volunteering at Baltimore Hunger Project. It is the highlight of his week! When he walks into Baltimore Hunger Project's headquarters, located at the Family League, he always stops for a customary happy dance. He then labels each weekend food pack, very purposefully and carefully, all with a wide grin on his face.

Robb’s different abilities make many daily activities a little harder for him. Many times, volunteers help him get through those activities. At Baltimore Hunger Project, however, Robb becomes the volunteer. Having now been on both sides of volunteering, Robb knows better than anyone the positive impacts it has. He feels privileged to take part in the experience, and he gets as much out of volunteering as the people receiving the weekend food packages!” Baltimore Hunger Project is very grateful to Astri for sharing her story about her brother, Robb. It is not unusual to have volunteers who ‘pay it back’.  However, Robb’s story let’s us know that we are helping meet our own goal of creating a fulfilling and meaningful volunteer experiences for our volunteers. “Our volunteers make a difference,” said Lynne. “We could not do all we do to help the children of Baltimore Hunger Project without our volunteers like Robb Doub.”   "One person can make a difference, and everyone should try." ~John F. Kennedy

World Autism Awareness Day

Happy World Autism Awareness Day! This special day started in 2008 by a representative from Qatar, and now it is recognized by all the countries within the United Nations. In celebration, many notable landmarks have continued to light up blue in honor of the event. Including the Empire State Building, Rockefeller Center, and even the Ancient City of Petra! To show your support please continue to wear blue for the rest of Autism Awareness month.

The Accountant

https://www.youtube.com/watch?v=DBfsgcswlYQ

                    The Accountant is an intriguing movie about a guy with aspergers, a form of autism, who does the accounting for different criminals throughout the world. The action thriller portrays the character Christian Wolff as a guy with High Functioning Aspergers. It shows his difficulty in expressing emotion, it shows him "stemming" or using self stimulation (stemming is a behavior we see in Robb in which he swings a t-shirt or dish towel), and he also gets set in daily routines (Robb is also a big fan of routines, always getting irritated when we drive off the normal route, for example). At the same time, though, the movie portrays Wolff as a genius who can deal with any numbers put in front of him. Many people with autism have excelled in math and engineering namely Temple Grandin and Einstein. Many people do not feel the movie is realistic saying that he would have suffered more sensory overload after each murder, and he would have been consumed by guilt. While this is true for some people with autism, I think the idea that "when you have met one person with autism you have met one person with autism" can be applied to this movie, and Wolff could easily be a real person with autism. Though Hollywood may seem somewhat unrealistic (an accountant who is also a trained killer), I believe this move does do a great job at showing not only the struggles of many people with autism but also their strengths. It shows that being autistic does not make a person stupid, and instead it is just another way of seeing the world (and in some cases, it allows people  to become prodigious in some fields)! My family has been able to relate this character to my own brother, and I think that it will change people's view on autism for the better!

Listen to my Silence

          Recently my school has done a lot of work to promote "Ally Groups" in which girls from all grades come together to discuss issues in our community. At first, I was optimistic about this, and when it came to my turn to discuss about what I feel silenced by, I explained how I feel silenced when people use the r-word. That came with a reaction of "what" and I responded by explaining the r-word is retarded, and it is extremely offensive when people use it in the special needs community. Someone then responded to me by saying, "my mom says that mental retardation is still a medical term". I was shocked and hurt, and when I went on to respond that the word was not an appropriate term anywhere she said some doctors still use it. The conversation was then dismissed, and I was forced to sit there and listen to a senior discuss her boyfriend for the rest of the meeting. When discussing the situation with some close friends, they to responded with "well is it still a medical term?".

          I have since then looked it up, and it 2010 President Obama signed Rosa's Law which stopped the use of the term for medical use. While I do have satisfaction in knowing that the term is not used anymore, I am still shocked and saddened that someone would try to undermine the offensiveness of the word by saying it is used in a medical field. Honestly, this whole situation has just made me feel alone in a school where people do not respect my family and friends. I know this is not the case and many people have joined me in taking the pledge to end the use of the r-word, but at the same time, I worry people do not truly understand what taking the pledge should mean. Prior to the last event I was with a friend who had taken the pledge with me, her mom, and my mom when her mom said the r-word. I still feel guilty that I did not say anything, but in the moment my mom and I were both in shock. While I do not know the mom well, her daughter has always been super supportive in my work to help end the word, yet she did not even notice it.

          I do understand that many people were just raised thinking the r-word was acceptable, and changing vocabulary is not always easy. That is why I hope to promote awareness on March 31 and throughout the year in my school community and make it clear that using the r-word is hurtful, ignorant, and should no longer by tolerated anywhere.

Special Olympics Lunch

          On Sunday, Robb and I attended a lunch with the dolphins (Robb's Special Olympics Swim Team) to kick off this season! We both had a great time catching up with old team members, and also meeting a new coach who will be helping out with the team throughout the season. Though Robb loves his team and participating in the Special Olympics, when we are with them I think we both cannot help but feel a slight separation. All of the team members sat at one table, but due to "the claw" (Robb's tendency grab other people's food). my family sat in a booth next to the table. When he hit his head because his burger had not come out yet, everyone gave him a funny look. The teammates are usually great about saying hi to Robb and asking lots of questions about how he says ahh, or why he hits his head, but I feel that some of the other parents and coaches have a long way to come. I had one parent tell me that she thought it looked like Robb could not swim just because he does the doggy paddle when he gets tired, and I feel that comments like those are not only rude, but they are also offensive. Robb hears them. Also, coaches seem to think that they cannot have a conversation with Robb because he is nonverbal. They will say hi, and then look at me like I am his bodyguard. I have to laugh because I picture Robb as a gangster or something and whenever someone says something to him, he whispers a response in my ear and I respond for him. Anyway, I still feel like the coaches can understand that if you say hi Robb will respond, and if you ask him what he did during the year, look at him and I can give you some details. Though this Special Olympics lunch did bring back memories of disrespect in a community that should be fully respectful, I still have hope that this year Robb and I will be able to show the community that Robb should not be viewed as less. I don't say this to offend the Special Olympics team or community, but instead to show there is a long way to go until we have complete acceptance. Hopefully, Robb and I will be able to make the change we wish to see.

Robb's New Team

          To start off the new year, Robb joined a basketball team! He was paired up with a local high school team, and he goes to the games and practices and cheers them on. My family was a little unsure about how this would work at first, thinking he might get bored, but Robb has loved every second of it. When we arrive he does his happy dance, and then when we go in he gets very quiet and very still, and he just watches the basketball fly through the air. The practices do not seem like the most exciting things, but Robb refuses to leave until the practice is over, staying the whole game.
          On the first day, I am not sure if Robb's teammates really understood what was going on when the coach said he was joining the team, but they have been super great with Robb at every practice. They all come up and say hi to him which always makes Robb laugh, and I think they have really enjoyed having him there to support. He really is great at cheering for them.
          I think my favorite part about it is, Robb has not only gotten a winter activity to participate in, so he does not have to sit inside our house all day, but he also has a new group of friends because of a common interest, not common challenges. People forget that he enjoy's hanging out with people with and without special needs, and that his autism and Down Syndrome should not matter in a friendship. I hope Robb's relationship with the team will continue to grow throughout the remainder of the season, and that in 2017 Robb will be able to get more activities he can do in all weather.

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.