It's been a while

It is hard to believe it has been months since my last post. While quarantine seemed to drag on, I never actually felt like time was passing. It just seemed like a pause. Now, I am sitting in my college dorm, four and a half hours from my family, and even though I was with them nearly all-day everyday for most of 2020, and even though I love college now, I feel like my time with them wasn't long enough.

I think I waited to post because I was hoping that the pandemic would end in a couple weeks, and I could reflect on it in the past-tense. However, even as I move to college and gain as much normalcy as is safe right now, Robb's experience continues much the same to the start of quarantine. His classes are still online. Outings are still almost exclusively limited to car-rides. Leaving the house always feels like a risk. Like everyone, he gets worried and frustrated and bored and sick of this "new normal."

I always knew leaving for college would be difficult and that questions about Robb's future would remain at the forefront of my mind, but I never thought those concerns would be coupled with anxiety about his health and safety in the present along with that of my whole family. Not only is Robb's future up in the air, none of us are sure what the future will look like, and it's frustrating to be living in a world where we have to find comfort in convoluted messages about vaccines.

Even so, I feel so fortunate to be able to say that there have been small silver linings as Robb adjusts to life during covid. He gets to listen to as much "Party in the USA" as he wants. We started walking every day, and Robb seemed to like it so much he would start putting on his shoes and come get us to go. Also, I got to spend a lot of time with him before going off to college which I will always feel grateful to have had.

A couple weeks before I left, I took a picture of Robb sitting in a chair and smiling at me which is now right in front of my dorm room desk. It makes me smile. I started this blog to share Robb's light and make others smile with me, but now I think I am most grateful for it because of the of collection of memories with Robb that I can look back on and smile. Or even when I can't smile, I can remember that the difficult times were always outnumbered by the good, and every single post is rooted in my love and admiration for Robb.

Even as one chapter ends, I know we have more adventures ahead, and I cannot wait to capture everything that comes our way. Thank you for reading and giving me a reason to record Robb's life--he truly is an amazing brother.

The Last First Practice

Last weekend was my last first Special Olympics swim practice of the season with Robb, and I still can't believe it is my last year. I started swimming with Robb six years ago, and it has remained a constant for me throughout middle and high school. No matter what is going on, I can count on Robb making me laugh by stopping in the middle of a lap to sign swing, swim, ahhh or pretending to touch the ground with his feet (even as I yell "feet up") just to get a rise out of me. It was in SO that I really felt like Robb and I could just be “normal” siblings, laughing and messing with each other lap after lap. It’s little things like that that I know will be the hardest for me to be away from in college, and so for now I am trying to make the most of my last season with Robb and enjoying every second!

Robb Sick

The Monday before Thanksgiving weekend Robb got sick. It seemed like a regular stomach virus, which was not surprising considering I had been sick the week before. He stayed home from school and as he seemed to be getting better Tuesday, we decided to still make our 7 hour car ride to North Carolina to visit family. As we were driving down, Robb's breathing sounded a little strange (like he was stifling a cough), and when it continued through Wednesday morning, my parents took him to the Emergency Room. After a day of many tests, we found out that Robb had a collapsed lung. There was fluid inside and outside the lung, and it had completely stopped working. The doctors said it could have been in this state for a while. Robb was kept in the ICU for a week and has just returned to school.
Despite how awful it was in the moment, I can't help but look back on what happened and feel incredibly lucky. I feel lucky that my parents decided to take Robb to the hospital as soon as they sensed something was wrong. I feel lucky that even when Robb's lung did not "sound" like it normally does when someone has pnemonia, the doctors still did an x-ray. (They found out that the reason they heard no cracking like usual was because the lung had completely shut down.) I feel lucky that, because it was a holiday, both my parents were able to spend as much time as possible with Robb. I feel lucky that we were in North Carolina surrounded by family where my younger brother and I could stay. (Poe and I did spend a couple of days at our house together while Robb and my parents were still in North Carolina, and we received plenty of support and food. What cracked us up was the fact that everyone was so worried about us getting food and were surprised to learn we just went to the store and got groceries to make our own meals.)
However, on Thanksgiving and throughout the week, I was not feeling particularly thankful or lucky. I was scared and sad and angry. Many people associate autism and Down Syndrome with illness and assume Robb is often in and out of hospitals. However, the reason that this was so scary and sad was because Robb is not a sickly person. (Considering the many vitamins Robb takes, he is probably the healthiest guy I know.) And when he is sick, he often cannot communicate the problems to us. He was operating on one lung and pushed through without us having any idea. The "what-ifs" and "worst-case scenarios" about what could have happened and what could happen in the future filled my mind, and I still cannot help but worry about all of the things Robb cannot tell us. It does not seem fair that someone so filled with love and kindness could have to go through so much pain without sharing it with anyone.
Robb and my parents came back to Baltimore after a week in the hospital, and Robb has been getting better every day and went back to school on Wednesday. No one in my family will forget the pain of this experience, and I know that after this experience, I will never let the danger of Robb's inability to express his emotions escape the back of our minds. However, going forward, we just keep reminding ourselves how lucky we are. Robb is the most amazing person I have had the privilege of knowing, and I am going to continue to do everything I can to spread Robb's light with the world.

Fall Fest 2020

      This year, a group of students from my school returned to Robb's school St. Elizabeth (SES) for their Fall Fest! I started the program as an excuse to surprise Robb and hang out with him, but although this was only the second time we went to help out, over thirty students signed up to volunteer on the trip!
      Fall Fest is a celebration of the end of Robb's Fall Quarter, and SES has tons of fun activities for students throughout the afternoon. Everyone wears costumes, and Ms. Dupree, Robb's one-on-one created coordinated spaghetti and meatball shirts for them to match! Robb even added a little extra flare with cat face-paint. I have to admit I was a little worried about how this would go–Robb has never done face painting before, and he seemed unsure as my friend started creating whiskers. Although the first couple of marks were quickly wiped off, he eventually got whiskers and seemed pleased with his new look!  From there, Robb did the hay-ride and then we danced for almost the entire second half of the afternoon to everything from "Party in the USA" to "Monster Mash."
      The St. Elizabeth trip is the only event with a special education school that my high school has organized, and I am always nervous about how it will go. Many of the students have little to no connection with the disability community, and I know that on most occasions, most students do not feel comfortable dancing their hearts out in front of their peers. However, the positive feedback has been overwhelming! Not often do we get to walk into a community where our job is to make others happy and encourage them, and I am so excited that, even when I graduate, the connection between SES and my school will continue to develop.

                                           

 
 
 

*Swing* *Swim* Ahhhh

Robb and I recently created our first handshake. I'm not quite sure how it happened, but we were hanging out and Robb signed swing, swim, and then said ahh. I then did the same thing back to him, and for the past couple of months, our greetings have consisted of us doing a synchronized swing, swim, ahh.
Describing how I communicate with Robb is always so difficult because it is completely different from how I would communicate with anyone else. It is a mix of modified sign, sounds, words, feet thumping and hand clapping which even an onlooker would have trouble deciphering. However, anyone who has gotten to know Robb knows that when Robb is thumping his feet he is happy, if he is jumping he is ecstatic, if he signs hamburger he wants you to talk, and mumum means that Robb wants all eyes on him.
It always makes me wonder what is going on in my brother's head. There is something so clear and deliberate about his actions, but while I know much of what it means, I will never know how he created this language for himself. He has found a mode of communication which while different, certainly works for him, and which I find to be a refreshing change from the millions of mixed signals and nuances we use everyday.
Oftentimes, there seems to be a misconception that this language is equivalent to what an infant might do which leads people to use high pitched voices and "baby-talk" with Robb. This is not just demeaning, but also just blatantly false. I have seen Robb's language grow and evolve over time, and the fact that he has been able to develop his own form of communication is remarkable in its own right. We may not ever be able to communicate completely, but at the same time, I think our communication will always be filled with more honesty and sincerity than my conversations with any other person I know.
So though its full meaning may seem unclear, please know the next message comes from the heart: *swing* *swim* ahhhhh

My New Book! #AbilityInnovation

Even though Robb has been away at Camp Huntington for the past couple of weeks, he has remained in my foremost thoughts as I begin the pre-sale campaign for my book: Ability Innovation.
I began working on the book at the beginning of this year through New Degree Press with the goal of educating myself and others about different approaches to enhancing the group housing experience. As I discussed in my post on Pathfinder Village, thinking about my brother's adult life has been stressful and scary as it often seems quality housing options are few and far between. I was determined to take action, and now my book about innovation in housing for people with intellectual and developmental disabilities will be published December 2019! (If you are interested in pre-ordering a copy and/or spreading the word visit the campaign page here: https://www.indiegogo.com/projects/ability-innovation-by-astri-doub/x/22154415?create_edit=true#/!)
Writing this book, I have gotten to talk to leading experts in disability housing, and it has been so uplifting to learn about all of the progress being made in the field. I still do not know what the future holds for Robb, but I am so grateful that I will be able to take an active role in enhancing his experience. The vast majority of leaders with whom I spoke had some sort of connection to the community of people with disabilities, and having Robb as a brother, I can completely understand why because every time I learned about the successes and hardships in the field, I thought about how they could affect him. Robb is the most amazing person I know, and it is frustrating that we live in a society that favors a type of processing and thinking style that is different from his own. I know that changing this very makeup of our society may be an impossible task, but by taking action in a field that is the base for our lives, housing, people have at least helped their loved ones and beyond build meaningful lives.
I never before considered myself an active participant in advancing the lives of people with intellectual disabilities, rather, I was just a sister who loved her brother and would do anything for him. However, I am so excited to be able to take what I have learned to help my brother and  share it with the wider community! My contribution is minuscule compared to the leaders discussed in my book, but it is a privilege to help recognize their efforts in the field!

SO Naval Academy Qualifier

Upon arriving at the Naval Academy for the Special Olympics Qualifier, I did feel a little hesitant. After having the car examined by police dogs, we had to make our way through endless small roads within the school campus to find our event location and I just hoped that my map skills would lead us to the right location. The intimidation continued when, as we walked into the gym to join our team, we were met with a sea of midshipmen (students at the academy). I even checked the surrounding signs just to make sure that indeed this was the Special Olympics Qualifier and not an unfortunate intrusion on a Naval Academy activity.
However, when I realized that all of the people there were volunteers, I couldn't help but smile about the number. In fact, they have so many people helping out, every single athlete got paired up with a midshipman. Robb looked so psyched to be back at the familiar location, and although this was my first Naval Academy qualifier, I began to warm up to the event as Robb charged into the room.
We immediately approached  a staff member to get paired up with Robb's midshipman. However, Robb decided that one midshipman was just not enough for the day. As we were talking to the girl with whom he was paired, Robb drifted over to another group of midshipmen, took one of them by the hand, and led her over to join our group. Yes, indeed. he took matters into his own hands and managed to get two midshipmen to spend the day with us, and it turned out that the additional midshipman he chose would be important in the race to come.
The Naval Academy Special Olympics Qualifier has always been the favorite for my family for one reason: the deep pool. While during the actual state Olympics, Robb has to work to keep his feet from touching the ground, Robb can swim across this pool without distractions. Yes, sometimes spinning around within the pool can be tempting rather than finishing it out. However, Robb completed both of these races with his fastest times this season.
The difficulty came when it was time to get out of the pool. Although for the first race Robb got out of the ladder without a problem, at the end of the second, Robb was about halfway between each ladder and (well aware this race was his last) uninterested in getting out. There was a swimmer on guard to help athletes out, but because he was otherwise engaged, Robb's second midshipman took matters into her own hands and jumped into the water in her clothes to help get Robb out. As she swam Robb to the wall, the other midshipman stood above them on the wall waving a sign that read "Go Robb" and cheering them on. It was definitely not what anyone was expecting to see at a Special Olympics Qualifier, but Robb got out of the pool laughing the whole way. He then continued to smile and look questioningly at the midshipmen as we all paraded out of the pool. Clearly Robb had a plan in mind when he made sure to get two volunteers!

Angel's Birthday Party

I did not realize how long it was since I last posted until I saw that the blogger website format was not even the same when I logged in. I guess Robb and I have both been pretty busy. Between school, hiking, team-up-for-one, athletes-serving-athletes, KEEN, bowling, track and Horseback riding, my only solid time with Robb is hanging out on the weekends or during Special Olympics practice. That's why when Angel, Robb's prom date and a fellow Autism on the Seas traveler, invited all of us to her Birthday party, it seemed like a great opportunity to not only celebrate her birthday, but also to spend some quality time together.
So, Robb along with my younger brother, my mom, and me all got dressed up and packed into the car on Saturday afternoon to head over to the Birthday extravaganza! At the party, not only the faculty at Robb's school but also staff from Autism on the Seas were all in attendance, and the familiar faces, along with the bags of chips and fruit-cups on the table, made Robb as surprised and excited as Angel about the party. Robb immediately charged to the front with all of us close behind to get the prime spot in front of the DJ, and throughout the event, so many people came up and talked to him that I had not even known beforehand I felt like I was with a celebrity.
The event was a reminder to me about the closeness of our community. It does not really matter how long you have known people or how well you know them or even if you have just meet them because you are in on the secret: to know people with intellectual disabilities is a privilege and so often, it is in the special needs community that we all find the most joy.

   

Horseback Riding

          This month, Robb started horseback riding! Although a seemingly very niche market, there are many therapeutic horseback riding activities in the Maryland, and not only does the program make horseback riding accessible and fun for people with IDDs but it also allows them to develop skills.
          To get on his horse, Onyx, Robb ascends a ramp, so all he has to do is sit down. Then, with the help of three volunteers, Robb rides around the facility and performs various activities. He practices balance through having to reach for different objects while on the horse, and he is also learning how to guide the horse on his own! So far, Robb seems to most enjoy the ride rather than the skill-building activities, and he was not amused when the horse started trotting as he bounced up and down. However, he always gets a smile on his face after accomplishing every task presented to him.
          Obviously, there are always obstacles. Last week Robb did not want to get onto the horse for no apparent reason even though he was smiling and laughing the entire way to the barn, but when he got the alternative option of grooming the horse, he was pleased with this activity. Sometimes I think Robb just likes knowing his options and maintaining a power dynamic that places him at the top (I mean, who doesn't want that?), and it is great to know that there activities where he can make these choices for himself.
          As adulthood fast approaches, the amount of activities seems to dwindle, but this program helps to remind our family that there will always be options for Robb to live an enriching life, and although maybe not verbally communicating his opinion, he will always have choice in what he chooses to participate to create the life he wants for himself.

Autism on the Seas

"Vacation" was never really something my entire family did. If we traveled, it was usually in the time when Robb was at camp which meant packing as much in as was possible in the short time before we picked up Robb. Furthermore, although I loved these trips, they always were accompanied by a sense of guilt. I knew the tours we were doing would not have accommodated Robb, and he was much happier at camp. But still, I always knew that when other people looked at us they thought our family seemed complete.

          Thus, when we decided to go on the Autism on the Seas vacation program for my brother's 19th birthday, we were so excited to go on an official family-vacation! Autism on the Seas is a program that accommodates families of people with special needs on the Royal Caribbean cruise line. We were doubtful about the success of these accommodations before going because it always seemed unrealistic that they could really meet every family's particular needs. Every family with a person with special needs is so different, and ours often needed more accommodations than the other families we knew. However, the mother of Robb's prom-date and school-friend Angel spoke highly of the program, and she made sure to address our many doubts before going.

          Despite our hesitancy, the program really did everything to make the experience great. We had extra people to get us through lines which have always been a struggle, and there were even times in which staff planned fun activities for Robb if there were activities we wanted to try that he would not enjoy.

         Most importantly, I think Robb could not possibly believe how amazing the trip was. We have never before been to a place where almost anything he could sign was at his fingertips. We stayed on a "boat," he got to "swim," there was always "music" playing and, much to my parents dismay, there were "hamburgers" and "ketchup" for Robb almost every meal. Also, we got to spend almost the entire day together as a family. On my first day back from school, I remember I felt like it had been ages since I had seen Robb by the end of the day.

          I feel like there are so many little moments upon which I could elaborate, but I think I will leave you with one of my favorite memories. There was a wave machine on the boat, and after seeing our younger brother Poe enjoying the ride, Robb decided he would take a go at it. However, instead of lying on his belly, Robb got on the board cross-legged, so that he could keep hold of the instructor's hand. By the expression the instructors gave us, this method was clearly unorthodox, but from the look on Robb's face, everyone could tell it was definitely the most fun way to ride.:)

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.