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Wednesday, October 10, 2018

A Moment

I cannot emphasize enough the unconditional love I have for Robb. It is as if he lets off light, and whenever in his presence, I cannot help but shine with him. For example, this weekend I was watching a movie with my brothers, and Robb decided that there needed to be some action. So he began to shake a painting on the wall until we would make a scene to stop him. When we tried ignoring the activity, he would go over and put some pizza in his mouth. Now Robb knows he cannot eat pizza, and he rarely ever actually eats it. However, he also knows that if he sticks it in his mouth, we will come over to be sure he does not eat the food.
When tired and trying to relax, it is easy to get irritated with the constant interruptions, but I cannot help but laugh when I see Robb's smile every time I give in to fix the painting or take the pizza from him. He tries to hold back a chuckle as he innocently walks over to sit down in a chair. He then clasps his hands together and smiles at me as if he had been sitting there all along. However, when we continue with the movie, he again gets back up and continues to divert attention. Any time we try to hide the pizza or move the painting, he takes it as a new challenge, and (as by this time I have already forgotten the movie we are watching), I spend the rest of the evening watching Robb's eyes darting around looking for his next point of attack.
I do not understand why this moment came to mind when I was reflecting on the love I have for my brother. However, I do not think I need to understand. There are so many things about my brother that I do not understand, but why focus on those things when I have such an amazing person in my life. So instead of overanalyzing, I am going to let this moment remain another memory that compiles my brother's story and my love for him.


Friday, August 17, 2018

Pathfinder Village

          Throughout this summer, I have probably spent over 100 hours talking about college. I am going to be a junior, and I have been planning tours, narrowing down schools, and stressing whenever possible. That was why when my mom said my dad and I were going on a tour, I immediately assumed she meant for me, and even though I found out the truth only a couple seconds later, I still felt a jolt into the reality of the situation. We were going to tour Pathfinder Village, a community for adults with special needs.
          This was going to be my first tour to see the options for Robb's future, and I was sure that I would be in tears throughout the tour. We had heard this was one of the best places in the country, but the better it was, the more painful it would make our situation since Pathfinder Village really is not a realistic option for my family. First off, a five+ hour drive from my home is too far for us to be from Robb; even if this was absolutely perfect, it would be an almost impossible choice. Also, the money received from Social Security does not transfer to other states, so my parents would need to take on an unimaginable economic burden. According to Forbes, in 2016, the new graduate was in debt almost $40,000 on average, and these were people paying for just four years of college. Community living homes have similar annual costs, but these costs are paid for a lifetime. However, as my parents often say "we will figure it out," and I knew if this was truly the place where Robb would be happiest they would try to find a way to make it happen.
          Going through the tour, I remember my spirits lightened tremendously. There were no tears, and I even gained a certain smugness. Obviously, I had to admit the facilities were nice, and although they did not have too many people who required a one-on-one, they did have that option. However, I was always told that when I went on college tours, I would know when I stepped onto my future college's campus, and I thought since I had not experienced that at Pathfinder, it was not the right place for Robb. Also, in addition to a lack of "feeling" it was right, I had come up with various other problems. It was upstate New York. It was cold. They did not have a pool on site. Clearly this place was not right for Robb. I made a list of all the improvements I hoped to see at the next place we visited in my head, and I smiled when I thought about visiting the even better places that were close to my house. I knew people had talked highly of this place, but I was certain this could not possibly be the best in the country.
          I will never forget the tour guide walking away. I expected to turn around and laugh with my Dad about how we are lucky this is not the perfect place. In my mind, the decision became easier: Robb would stay in Maryland because the facilities there must be were just as good as Pathfinder. However, when she was out of earshot, my Dad started to talk about how this was the best place he had seen. He mentioned that he was not surprised as everyone had told him that this was one of only three places like it in the country (the other two being in Kentucky and Arizona). He called my mom and told her how amazing it was; he said she would have broken down in tears if she had been on the tour.
          At first I felt sadness, but it quickly turned to anger. I feel angry that our society seems to believe that lower functioning people with special needs do not exist after they turn 21. There are only three satisfactory programs in the country, yet disabled people make up the largest minority in America. And at the same time I was angry at my ignorance. I knew that government programs are cut exponentially for adults, and I had seen firsthand that the fight for guardianship was a grueling process. However my entire life, adults with special needs and their actual day-to-day lives were completely off my radar.
          I will never forget the first time I really considered the lives  and needs people with special needs have after graduating. I was at Special Olympics with a friend who was really interested in seeing the program. We were waiting for Robb to finish changing so that we could leave, and I was explaining to him the wide age range of our athletes; our oldest athlete being around 60 at the time. When I mentioned the large number of adult athletes as they walked out of the facility, my friend asked me, "Where do they go?" i.e. Where do they live? What is happening when they are not at Special Olympics? What are they doing 99% of the time? I was speechless. I mulled over the loaded question in my mind, and the only thing that came to mind was a phrase I had heard once in a while: "assisted living." Then, with all the confidence of a self-proclaimed expert, I answered "Many people with special needs have assisted living." And that was that. I did not even know what assisted living meant, but it was a phase I could use to eliminate worry and thought on my part about Robb's future.
         But now Robb is almost 21, I am left with the discovery that adequate "assisted living" is few and far between and truly amazing "assisted living" is more of a hope for the future than an actual option. With the palpable reality of the situation, I am unsure if we will ever find the perfect or at least perfectly adequate place. However, even through this process, I am reminded of how fortunate I am. I have parents that got Robb on lists that allow us to have options on Robb's future (even if the options are not ideal), that went through the long process to get guardianship, and that overcame the millions of other roadblocks faced throughout this process alone. I know that we probably will not find a truly ideal option for Robb's future by the time he turns 21, but nothing is permanent. Maybe we will change a program to make it ideal, maybe a new one will come along in the next 5-10 years that will be amazing. Maybe not. But through talking about the "rest of Robb's life" I know that all we really want is for Robb to be happy, and despite all the uncertainties and doubts, through the endless love my whole family has for Robb, I know Robb's future will have happiness.

Monday, July 16, 2018

"Swing" Robb's New Favorite Sign

Over the past couple of months, the sign for swing has become Robb's symbol that pretty much represents all good things. Whether we are listening to "Party in the USA" (surprisingly, his new favorite song) or training for Special Olympics, Robb signs swing and continues to sign it until the person to whom he is signing says or signs it also.
Although Robb's sign for swing is slightly modified (he does not do two fingers, but instead four fingers), his sign is still extremely clear. This is such a testament to his amazing memory since he has not used this sign in years--I did not even remember what it meant when he first started signing it again. I love the sign not only because it means Robb is happy, but because it is just another example that communication is fluid.
I think when I tell people Robb does not talk, only has modified signs, and seems to use his device mostly for food right now, he goes from being a person in their minds to just another thing or burden in life. Something that cannot add any real value. However, Robb communicates more honestly and clearly to me than most people in my life. I can converse with Robb for hours without saying a word, and often when I do not see Robb for a while,  I start feeling an emptiness and then count down the days until we get to see each other again. This one sign is a perfect example: He expresses his happiness by evoking the sensation of swinging, the feeling of flying, an experience that is associated with pure, childlike joy. Instead of a communication limited to words which try to universalize our personal feelings and experience, Robb expresses joy using the perspective of his personal experiences with which many of us can relate or at least with which we can empathize.
This is not to say that lack of formal means of communication makes life easier, and often, Robb will get upset when we know he has something to say but just cannot express it. However, I have seen on a daily basis that Robb's communicative skills provide more meaningful and deeper connections for those who take the time to converse with him.

Monday, June 4, 2018

Robb's Prom

On Friday, May 18, Robb went to his first Saint Elizabeth's Prom!
      He was not planning on attending--although Robb loves lots of people and music, we were unsure about this setting and the many issues that could arise (not wanting to leave, not wanting to go in, not wanting to wear a suit----and if Robb doesn't want to do something, he won't. I seriously think he would make the best protester in the world).
      However, a girl from his class asked him to go (she had a promposal and everything:)))))), and it turned out to be a huge success!
      When she asked him to go, Robb responded on his device "I would like that" without any prompting, and the night of the prom, he put on the tuxedo without any complaints. Although there was a tree in the corner of the gym which Robb refused to leave, his date was very understanding, and she did dance around him some. Also, despite taking probably over one thousand photos, they ended up getting on that was perfect (needless to say, Robb ran back to return to the tree after the photo taking was over). By the end of the night, my parents were already planning Robb's prom for next year!
      Many people might be reading this thinking my family loved that Robb went to prom because it provided a sense of normalcy: promposal, getting the perfect picture, etc. And I guess on some level the normalcy added to the appeal of Robb going to prom. I do love the idea that Robb has good enough friends at school that they want to hang out with him, and I do like the idea of Robb getting to go have fun at party. However, I think the reason I like these things is because I want Robb to be happy. Hearing about the prom was fun, but the best part for me was seeing pictures of Robb with a big smile on his face or in mid-laugh.




*Also, big shout out to the awesome the Saint Elizabeth staff. Robb's aid was not even working that night, and she stopped by the prom to see him!*

Sunday, April 29, 2018

2018 Fashion Show

On Friday, I got to attend my first Saint Elizabeth's School Fashion Show, and in the words of the MC, "If that doesn't make your weekend, I don't know what will!" I do not get to visit Robb's school very often, so it is invaluable me to be able to attend the events and see the awesome community of which he is a part. It really was such an amazing event--Robb rocked the stage as Mohammad Ali complete with boxing gloves around his neck! He seemed quite pleased with himself as he walked down the stage (and as always, he loved the cheers), and he was pretty psyched when we got to take him home afterward. Also, we got to meet his prom date (but more on that later)!!!!
Robb has done the fashion show for a couple of years now, and although it always takes him one or two times to become comfortable with it, he enjoys it more and more as the years go on.

Wednesday, March 21, 2018

World Down Syndrome Day 2018

          I have been writing this blog for almost five years now, and I almost always get the same reaction. People tell me how helpful I am with my brother, they ask me if I will work with people with Down Syndrome and other disabilities when I grow up, they commend how my family overcomes obstacles. These are all valid points, but they are all irrelevant to the purpose of this blog. Robb and I are siblings. We love each other. I am lucky to have Robb because he is my role model, my rock. He is the one who gives me a hug every time he gets home from school. He is the one who will come and listen to me while I practice a new song on the piano over and over. He signs to me when we are at swimming at Special Olympics practice even in the deep end just to show me how happy he is. I want to use my blog to address and contradict the idea of suffering and disappointment many people associate with disabilities. I want to stop people from ending my brother's accomplishments with "for a boy with disabilities."
          I would be lying if I said that Robb's differences do not profoundly shape our lives. They have changed the lens through which he sees, I see, and they have impacted most aspects of our relationship and how we communicate. They are the reason we sign, the reason most of our conversations begin and end with ahhh, the reason that when he gets upset, I often cannot understand, but they are also the reason we get to speak in our own special language, the reason that I can understand the subtle jokes he makes, and the reason that I am aware of World Down Syndrome Day in the first place.
          I love World Down Syndrome Day because we get to celebrate all aspects of the Down Syndrome community which always recognizes the obstacles so many people with Down Syndrome face, but also includes people's different interests and achievements. John Lee Cronin, a man with Down Syndrome, started John's Crazy Socks with his father which has expanded to offer over 1,200 different sock designs. Madeline Stuart has become the first professional model with Down Syndrome at 20. Tim Harris, another person with Down Syndrome started his own restaurant in his early twenties which continues to thrive today. And no one ends these accomplishments with "for someone with Down Syndrome."
          I know that these particular accomplishments are not the same as the ones we hope for Robb in the future. I know Robb may never live independently, and that communication right now is still a struggle, and that our goals are very different from those of the people listed above. But Robb can still reach his personal goals, he will still live a fulfilling life, he will still be happy, and so today we also celebrate the different goals of people within the Down Syndrome community and the value of each of them.
           I am not na├»ve. I know that there will be few people who read this, even less who care, and maybe only one person who is changed by it, but I know that if I change one person, that is one less person to continue the suppression of people in the Down Syndrome and wider disability community.  It is one less person who will tell my mother that she does not want to sit next my brother "because he is gross." It is one less person who will tell me that my close relationship with my brother is a sacrifice I am making. It is one less person to stare instead of smile when my family enters a restaurant.
          World Down Syndrome Day is a movement to change people's perception on Down Syndrome, and it continues to expand and strengthen daily. I am so happy and privileged that my family gets to help share that message.
          So without further ado....

HAPPY WORLD DOWN SYNDROME DAY!!!

A group of moms put together the following video in celebration of World Down Syndrome Day; enjoy!





Monday, March 19, 2018

Adaptive Skiing

           My family goes on trips all together very rarely. Although Robb loves planes and car rides, and we get to cut the lines with him in airports, actual trips that Robb would enjoy are difficult probably because there may be a lot of standing and waiting which becomes miserable for him. Also, things go bad quickly. And when Robb is miserable, everyone is miserable. If we are in a crowded area, and all of the sudden Robb sits down, there is little hope of him standing up any time soon. Therefore, when we find an activity that we all would enjoy we hold on to it. This year, I think we found the perfect thing to do. Robb had tried adaptive skiing before, but because he had been much smaller, this was really a test run to see how he would like it, and although we had a rough start, the experience was so much fun for all of us!
          The was it works is Robb gets strapped into a chair, and the instructors ski him down the mountain. On the first try, Robb was extremely suspicious. He had to be forced into the chair, and he was less than amused when his chair had to dip forward to put him onto the ski lift. Just imagine, my mother telling the people to go quickly so that Robb can understand what is going on while Robb yells and hits his head. The people pushing Robb believed that he would never be able to enjoy it, and I have to admire my parents for convincing them to try the activity again despite the failure.
          Fortunately, when he went back for his second session, he was very pleased and excited for the ride. He never seemed quite comfortable with the ski lift, but once on the mountain, he laughed the whole way down. He even started to put on the goggles himself to keep his face warm despite his notorious dislike of things covering his face. (He has thrown more than a few pairs of glasses out of the window of a moving car.) At the end, despite initial concern from the people pushing him, at the end they said he kept on signing "more" the entire trip whenever they asked how he liked it. All and all it was really an amazing program, and I would say that seeing Robb with a big smile on his face coming down the mountain was the highlight of everyone's trip.

Wednesday, February 21, 2018

Special Olympics 2018

A couple days ago, Robb and I started this Special Olympics Season! This year, my goal is to have Robb swim back and forth in the pool without touching his feet to the ground. Over the years, I have worked up from me swimming right in front of him, to me swimming a few feet in front of him, to me getting out of the pool while he swims from the deep end. He is so close to being completely independent, but unfortunately, the pool has a shallow end and Robb loves to put his feet down as soon as he can which would disqualify him in the competitions. When I start telling him to not put his feet down, he smiles and laughs bouncing on one toe at that perfect height where he has to bounce up and down to keep his head out of the water. Then I get into the water to make sure he keeps his feet up the rest of the way.
          Although I like to give him a hard time, I just love to see the smile on his face when we finish a lap, and I love that he can pretty much remain psyched even when he has been swimming for over an hour. Last practice Robb had me cracking up when he tried to put his hands in the air (his favorite sign to show he is happy) while we were in the deep end, and he laughed as he swam back to the surface. I have to give Robb credit for his sense of humor. Honestly, whatever happens in the following season, as long as every once in a while Robb puts "his hands in the air like he doesn't even care" I will consider this season a success.

Friday, December 29, 2017

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.

Tuesday, November 28, 2017

"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.

Sunday, October 29, 2017

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.

Thursday, October 12, 2017

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.

Friday, September 15, 2017

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.

Monday, August 28, 2017

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.

Wednesday, August 9, 2017

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!

Tuesday, August 8, 2017

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!




Sunday, June 25, 2017

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!

Tuesday, May 23, 2017

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.

Tuesday, April 25, 2017

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 

Sunday, April 2, 2017

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.