Two Weeks

          In a couple of days Robb will turn 18, and my whole family is getting excited...just before writing this I was texting friends about good gifts for Robb and discussing our plan for Robb's New Years Eve Birthday Party! I am especially excited for gift opening because I think I have found Robb the perfect gift--a rainstick. When he was younger he loved the rainstick he had, so I think this will be a pleasant surprise and bring back good memories! Due to Norwegian tradition we will begin the day waking Robb up to a traditional Norwegian song and giving the gifts. Then we will be going to Robb's favorite restaurant (and they sing to him!), then going to a 4D movie, and finally, ending the day with his party and bringing in the New Year.
          Every year, the information above stays more or less the same. We always sing and give Robb gifts in the morning, go to his favorite restaurant, have a party...I always take on the almost impossible task of finding the perfect original gift for the most non-materialistic person I know. But this year is different. Not the actual routine, but the significance of his age. Because Robb is turning 18, he becomes a legal adult meaning my parents are unable to do anything from scheduling doctor's appointment to making serious medical decisions for him. Fortunately, we have a court case set up where they can prove they need to remain legal guardians to Robb, but that is two weeks away. Two weeks where my parents cannot make any important decisions for Robb despite the fact that Robb cannot make those decisions himself. I am still struggling to understand why my non-verbal brother who could not communicate his opinion to a total stranger must rely solely on himself for any amount of time because of the mere fact that the earliest court date my parents could get was two weeks after his birthday. Ever since Robb turned 16 my parents have been signing papers, hiring lawyers, and doing all the possible steps necessary to ensure Robb's safety, but still, we must, to a certain extent, live in fear for two weeks.
          I know I need to conclude these facts somehow, but I am at a loss. Obviously, I am so excited to celebrate with my brother, but I cannot help feeling angry and frustrated at the system in place. I know I should feel lucky; my parents did get a court date, and Robb will be under their care soon. All this uncertainty will only last a couple more weeks. But the entire process has involved bringing out the worst in Robb...we must keep proving he is "a danger to himself and others." Also, for some sick reason, the fact that we can prove Robb is dangerous, the fact that it is extremely hard for him to communicate and his frustration can cause him to hurt himself, is the reason my parent can get legal guardianship overall. Some people will not get guardianship or many will need to fight much harder to get guardianship, and when they need to help their child the most, they are unable to. I feel like I need to make some uplifting comment about how hopefully things will get better, and the fact that life for people with special needs has improved tremendously over the past decade alone, but for now I just want to let the next two weeks pass as quickly and safely as possible.

"Why Sorry is a Bad Word"

           The Canadian Down Syndrome society recently released a video that speaks to a lot of families with someone with Down Syndrome. Entitled "Why Sorry is A Bad Word," the video discusses why sorry is such a horrible thing to say to parents who have a newborn with Down Syndrome.
           When Robb was born, sorry was something my parents heard often. Many people even sent condolence cards and flowers, and some asked, "Wouldn't it have been better if you just had a miscarriage?"  People may have thought they were empathizing, but in reality, flowers died, cards got thrown away, and after everything, Robb remained in my parents' lives. It is not easy for parents to find out their kid has Down Syndrome, but sorry can often make the parents experience harder than it already is. Instead of expressing pity, people need to support the parents and show them they are not alone.
           As one mom in the video says, you do not know what challenges any baby is going to face in their future, so instead of trying to anticipate those future challenges, celebrate the new life that has been created.

The Weekend of Walks

          This weekend we had both the ASA Walk and the Buddy Walk, and all in all, they turned out great! Athletes Serving Athletes is the program in which people push Robb in 5 and 10 kilometer races. On Saturday the organization put on their own race, and all people participating in the program come together for one final event which includes a one mile walk at the end of the race. It is always so much fun to cheer for Robb as he is pushed, but I always feel a little bad when the team wants to take a picture with Robb before the race. He smiles and laughs in the car ride there, but when the race is about to start, he wants to run, not stand around taking pictures, so he always comes off a little bit irritated. Fortunately, the race started pretty quickly this time, so there was not much sitting around, and people were tossing beach balls in the air which Robb found hilarious :).
          Today, the Chesapeake Down Syndrome Parent Group hosted the annual Buddy Walk, and this year, my friend and I created a team for people from our school to come and support. We had a great turnout, and I think we showed people a whole other amazing world! For a long time, I was the only person in my grade with a sibling with Down Syndrome, but last year, another sibling joined our community! Although Robb having both Down Syndrome and autism makes things a bit different, being able to share a part of myself with someone within my school helps when faced with discrimination and ableist slurs from other students and teachers. Also, we can get more people out to fun events like the Buddy Walk, and in the end, the event turned out great for everyone. Robb was very pleased to find a perfect spot to listen to the music, and that combined with the free bananas made the walk ideal. We had a bunch of people come to be a part of this event with Robb, and we saw people from St. Elizabeth's and Special Olympics. Also, during the time we walked, the rain held out, and everyone got to enjoy the event while staying dry.
          These events remind me how cool it is that I get to be a part of this community with Robb, and how I hope to continue opening this world to other people from my school because it really is a privilege to be a part of such a great community.

Turning 18

 In a couple of months, Robb will be 18. I never realized what a big deal this is until Robb turned 17, and the lengthy process for the parent's guardianship began. Because Robb will be a legal adult at 18, my parents have to get a lawyer and say why they should get custody over Robb. If they do not, my mom would not be allowed to make appointments for him, sign medical papers for him, or pretty much do anything. My mom once called a doctor to make an appointment, and thinking Robb was eighteen, they said they had to speak with him. Luckily, that mistake was corrected, but it was a reminder of the importance of guardianship. It seems ridiculous to me that this should be an issue. Robb is non-verbal, he has autism and Down Syndrome, and my parents make all decisions for his life. In the world we live in, Robb has to be reliant on my parents, but still getting guardianship takes time and money that could be spent making other important decisions for Robb or just spending time with him. It seems ironic that they love him so much that they must lose time that could be spent with him. However I know my family is on the lucky side of things, my parents can take the steps necessary to ensure their guardianship for Robb's future, and Robb being non-verbal, it will not be hard for them in court. We are also so lucky to live in a country where we can make these decisions and Robb can get help from my parents. I think that situations like these show me what I want to do with my life. I may only be 16, but I think that if I can bring awareness to the situations family of people with special needs face, I will have a life worth living.

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.