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.
Thursday, December 12, 2019
Wednesday, November 6, 2019
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.
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.
Tuesday, September 10, 2019
*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
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
Wednesday, July 24, 2019
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!
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!
Thursday, June 6, 2019
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!
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!
Monday, April 8, 2019
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.
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.
Monday, February 18, 2019
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.
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.
Tuesday, January 15, 2019
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.:)
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