Robb's New Aid

          About a month ago, I was lucky enough to plan a school trip to Robb's school's Fall Fest. This was such an amazing experience to see come together, and I especially loved seeing the smile on Robb's face when he saw me at school. Also, a highlight which made the timing of this trip particularly opportune was getting to meet Robb's new aid!
          Since Robb's old aid left St Elizabeth last summer, we have had three people. The first two quit after a short period of time, and along with losing an amazing person who had been in his life for years, Robb had to deal with constant change and uncertainty. Special-ed remains a universally understaffed job, and when finding any person to fill a job is daunting enough, it seems nearly impossible to find someone who we feel comfortable and lucky to have working with Robb daily. However, Robb's 3rd new aid this year, Ms. Dupree, is amazing! Not only has she stuck around, but she even told us how lucky she felt to put paired with Robb. She seems to enjoy her job which unfortunately, is not prevelent among many special ed. teachers. Also, as pictured below, she made costumes for Robb and herself for Halloween:) Kindness with which she approaches her job was obvious even upon our first meeting, and although she has only worked with Robb for a couple of months, we are optimistic about years to come.

Changing SOMD

          Special Olympics has always been a constant for Robb. Even with the uncertainty of Robb's future, my family always believed Special Olympics would always be there for us. However, ever since my family received the following email, we began to question our faith in the company:

          I offer my highest regards to the leaders of the webinar I attended: they genuinely seemed to want to hear all of the many possible ideas for how to deal with space issues. However, at the end, even after we had listen many feasible ideas to deal with the space issue, the leaders still said that an advancement/allotment system was inevitable. I asked to see if they would keep all events with this system, like the assisted and unassisted swim, but I already knew the answer. Any events in which Robb can compete would be dissolved making it virtually impossible for Robb to ever compete in the Olympics Games.
          Keep in mind that in Special Olympics' mission statement, it says that the goal of Special Olympics is to have "competition opportunities for all levels of ability." An advancement/allotment system falsifies this claim which is the core value that makes Special Olympics so amazing. Before, Robb could race competitively at his level of swimming. But with this new system, my brother again gets placed against expectations that diminish the value of all of his growth and skill development over the season. His goals may be different from those of his teammates, but this does not mean that they should not be recognized especially by the organization whose purpose is to give people with all levels of ability equal opportunity.
           Their reasoning for the necessity of the new system was that almost all the other states had done it, and that might have been the most painful part. There had already been many people before my brother in the same situation whose voice has been silenced.
         I am not going to let my brother get oppressed in a community that is designed to give him opportunities that everyone else has. We will find out the decisions of the Special Olympics committee with regards to their advancement/allotments plans in November, but until then, spread the word. To truly be an event for people with "all levels of ability," the Special Olympics needs to include everyone in the diverse spectrum of intellectual disabilities.

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.

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.

"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.

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!*

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.

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 naïve. 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!

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.

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.