Okay…I’m finally writing this. I don’t really know how to articulate everything. There’s just so much to say and so much I don’t want to say. I strategically scheduled this writing session while my roommate is at work so that I can sob without people around me because I’ve cried while writing emotional blog posts in the library before, and I don’t want to do that again.
Anyway, as you all know, my brother, Mysoon, has autism. Not the “quirky, high functioning” kind portrayed on T.V, but the “can’t communicate, will never get to get a job or have a typical life” kind. One of the reasons I lived at home for the first two years of college was him. I lived at home, commuted to school, and helped my mom take care of him. It would have been (and was) really hard for him if I left.
But, you know, the time came where I had to move out. I transferred to another university in another city and moved into a dorm in August 2018. I go back home every weekend to see him, and it’s become part of our routine.
Basically, the whole process has been really fucking hard and there isn’t a perfect way to wrap things up, but it’s been over a year now and I think my family has adapted to everything. With that said, I think it’s time to talk about it.
//Summer Camp
Looking back, I think the first time I left my brother was for a weeklong summer camp in Tennessee in the summers after fourth and fifth grade. Mysoon was seven or eight at the time. He couldn’t talk much back then, but I’m sure he was upset that I was gone. I didn’t really think about it at the time because I was a kid and he didn’t rely on me as much as he does now. My parents totally did the whole spiel about “when we die, you’re going to have to take care of him” lecture that every special needs sibling gets, so I understood all my eventual responsibilities, but things weren’t on me yet, so there wasn’t any guilt.
//Skipping Summer Camp
When I was in middle school, my youngest brother Zidan was to go to the summer camp I went to. My dad wanted to go with him to hike in the mountains and participate in the activities like he did when I went (I never saw him while I was at camp, but he was there. You know South Asian parents wouldn’t let their kids go to sleepaway camp that easily).
The thing is that if the three of us went, my mom would be home alone with Mysoon for a week. My dad tried to convince me to go, but I told him that I would only go if he stayed behind. Zidan was also really young and leaving your two children in another state for summer camp isn’t an option for brown parents, so he’d tell that said that my mom and Mysoon would be fine even though they obviously wouldn’t be.
I really wanted to go back and my dad continued trying to convince me to, but I decided to stay for my mom and brother. I remember the whole week thinking that my dad was being selfish for going, but he shouldn’t have to put his life on hold any more than he already has because of his special needs son. He and my mom switch off on things all the time, but a whole week seemed like too much. (That was just my thought process at the time. In reality, Zidan wouldn’t have been able to go to summer camp at all if one of them hadn’t gone with him)
This was the first time I truly processed that “you have to take care of things. You need to lessen the burden in any way you can.” And that feeling never really went away.
//Guilt Trips
The guilt trips definitely started piling on in middle and high school. Every time I had a sleepover or even just went out with my friends, my parents would remind me about how much Mysoon missed me and how sad he was. This still happens whenever I go out. Even when I go to work on weekends, Mysoon feels sad and misses me, but he can deal with it. People (not just my parents) remind me of this constantly to the point where my dad once asked me to stop working and he’ll pay for everything (which is something I decidedly don’t want). These comments are well-intentioned in that my parents are trying to convey how much my brother loves me, but it doesn’t always come across the same way.
//Traveling
Less than a year before moving out, there was a six week period where I went on three different trips. It was awesome and the last trip was the first time I had been away from Mysoon for an extended amount of time since elementary school. The first trip was a weekend trip to a book festival, so that wasn’t anything difficult. It was like a sleepover, so it was fine. After that, I took a five day trip to Disney World with my friend Kat. I didn’t feel guilty until I was on video chat with my mom and I showed my brother Cinderella’s Castle. We had been to Disney World as a family before, and I know Mysoon loves it, which is why I felt kind of sad that he knew where I was and I was disappointed I didn’t take him.
After that was the biggy. I took a three week trip to Bangladesh alone in December 2017. It was my first time being away from Mysoon for that long, and I thought I would feel guilty like I did at Disney, but I didn’t. I wasn’t homesick at all throughout my entire trip. I didn’t even think about Mysoon or feel guilty about leaving him. Being in Bangladesh was such an amazing experience for me, and I’ve realized in recent years that I don’t feel bad for leaving Mysoon when I travel because I’m so in the moment that I don’t think about home. I felt the same way in Canada. It was very much an “Out of sight, out of mind” situation.
The only time I felt sad about it in Europe was when my brother Zidan texted me, asking me for advice on what to do because Mysoon was frustrated and having a breakdown. I was legit texting him what to do in my sleeping bag while camping in Copenhagen. After Zidan told me things were fine, I just fell asleep feeling sad that I wasn’t there to comfort my brother. Other than that, I didn’t think about it. At this point, I had already moved out, so he was more accustomed to me being away. My trips the year before were harder for him since I lived at home at that time and my absence was much more jarring.
//After Moving Out//
Let’s get into the point of the post: what it was like to really leave my brother. I felt very emotional about it (guilty, sad, excited, angry, etc.), but I wasn’t able to show it. There is a lot to go into and I wrote about it already, so I won’t say all the details again, but I fell into a bit of a depression last year. There wasn’t a lot of excitement surrounding me moving out. No dorm room shopping or the like. I spent the first week after moving driving back and forth, trying to get Mysoon used to me being gone. I went home immediately after move-in day. We showed him my dorm room and made sure he understood where I would be during the week. Then I would drive back and forth every other day to every two days to help him slowly adjust.
This honestly wasn’t the hard part about it. It was the fact that it wasn’t ever about me. I spent all my time thinking about my brother and making my mom feel better that I didn’t even have a second to think about myself. A lot of family visited the month after I moved out as well, so I was going back and forth to spend time with them. I was driving everyone around and making sure they were having fun. I have a bad tendency to empty my cup to fill other people’s, which is a personality trait I could probably attribute to being a special needs sibling, but it got to the point where I was crying on my best friend’s couch about how lonely I felt.
I couldn’t cry in front of my family because my mom was crying and I didn’t want to make it worse. I couldn’t really enjoy being on campus because I felt guilty and I was driving back and forth so much to see my cousins before they went back to Bangladesh. And I couldn’t talk about how much it broke me to see how sad Mysoon was when I left and the fact that he could never express it.
After talking to my friend, I was able to work through the stuff that was about me and the fact that I was not a high priority for anyone including myself during that time. But that left a lot of room to feel more about Mysoon.
//The First Time I Cried
Eid was a few days later, so I drove to my cousins’ house after my one class. I was actually able to enjoy everything and spend time with my cousins and friends. Later that night, all the kids were in the basement and I went upstairs to grab food. Mysoon was laying on the couch, so I went to him and I stroked his hair until he fell asleep. And the way he looked at me made me cry. Prior to that, I only ever cried because of the rest of my family and how overwhelmed I was, but this was the first time that my crying was completely about him. Because I could see how much he missed me in his eyes and I really missed him too.
After he fell asleep, I walked to the basement before my parents, uncles, and aunts could see me and sat next to Zidan. I immediately told him about how sad and guilty I felt because he was the one person who could really understand what I was going through. He hugged me and started crying too. We sat there for a while until people noticed I was crying and started asking what’s wrong. Then my many cousins dog-piled on top of me as cousins do.
That was definitely the first time I truly felt sad about leaving Mysoon. The first two weeks after moving out was very much like it was when I was traveling. I was so focused on everything else that I didn’t have time to think about it (Plus I was with him all the time since I was driving back a lot at the time). My dorm room was a safe haven from all the crazy. Once everything calmed down, I only saw him on weekends.
//The Second Time I Cried
This was about a month or two later when I was actually on campus five days a week. We were in a routine and my family had gotten used to everything. I was video chatting with my mom in the bathroom hallway in our dorm suite, and she told me something Mysoon said. To preface this, all of us get super excited when Mysoon talks and think it’s very funny when he says things like “What the hell?” and even when he says sad things like “I’m different,” because he doesn’t communicate and it’s a big deal when he says anything.
Anyway, after I drove back to the dorm, Mysoon walked around saying, “Mysoon angry!” then laugh hysterically. He just thought the phrase was funny and my mom was smiling when she told me this because that’s how all of us react whenever Myson says anything period, but I started crying immediately. It was so sudden and came out of nowhere, but I was just staring at the phone screen with tears welling in my eyes because we both knew he was angry at me.
I burst into tears, and my mom was really surprised and asked me what’s wrong. I told her, and she said, “Oh my baby! I’m so sorry. I just told you that because we all thought it was funny. He thought it was funny. I didn’t know it would make you sad. I won’t tell you when he says things anymore.” She was basically rambling while I cried on the phone. I’m glad none of my suitemates walked in on me sitting there on the floor. I felt horrible in that moment because Mysoon had actually expressed how he felt about the situation.
//The Third Time I Cried
The last time I cried was simply because I just really missed him. There wasn’t an external reason. In the last year and a half since I moved out, I have only missed the rest of my family once. I talk to my mom every day and text my dad and Zidan all the time and go home every weekend, so I don’t miss them that much. Mysoon is different because he can’t talk on the phone with me and he and I are close. He literally clings onto me every Sunday before I leave because he doesn’t want me to go. That undertone of sadness hasn’t really gone away in the past year, but we’ve gotten used to it.
//How The Transition Was For Him
He was really sad at first. There was a point in the first two months where he wouldn’t like it when anyone else was near me the day I got home. He’s still very clingy every Friday when I come back in that he follows me around to make sure I’m not going anywhere. Back then, he’d try to pull people off me when they hugged me. At first, he only did it with Zidan, so Zee would hold on to me and yell, “My sister,” while Mysoon tried to pry his hands off my shoulders. He soon started doing that with my mom and dad, as well. I would sit next to my mom on the couch to watch T.V, and he would pull me off the couch because he didn’t want me sitting next to her. He stopped doing this after a few months. He eventually got used to me being gone during the week and knew I would come back every Friday. It’s confusing for him when they have a school break and I don’t because he associates weekends with me coming home, but there’s nothing we can do about that.
//What It’s Like Now
I’ve gotten into a routine of driving back to Atlanta every Friday then coming back to campus on Sundays. This puts a bit of a pin in my social life, but it’s worth it. My friends know that I’m not available on weekends, so I only stay an extra day or drive back Saturday for bigger things. Sometimes I think about all the things I would do on weekends if I stayed. I’d be so productive and social! Then I think about it, and I’d just feel sad and miss my family.
Mysoon has adjusted to our new normal. Whenever I say, “Triasha go to college?” he says, “No!” very adamantly. He also asks, “Where’s Triasha?” every day and waits for my mom to say, “She’s coming soon.” But Mysoon does that with all of us whenever we’re not in the house. He went through a phase last month where he didn’t like seeing me on the phone, but that’s because he didn’t like a joke my mom and I pulled about her trapping me in phone after he asked where I was. My mom would show me on video chat, and he’d grab the phone and hang up. This action has stopped, but my mom and I got a kick out of it at the time.
I think the final discussion point here is that he gets panicky whenever I go out. Even during summer or winter breaks, if I go out with a friend or go to work, he gets antsy and upset. I normally tell him before I go somewhere because of this, but I’m pretty sure he’s worried that I’ll go back to college for five straight days. It is what it is. I don’t feel guilty about this, per se, but I understand why he feels that way.
I hope this post wasn’t complete and utter word vomit. I’m about to reread it now because I’ve written this on and off out of order over the past year, which means it will be very choppy. This was a very emotional post for me to write, but I know some of you understand what I’m feeling. I wrote another post a few years ago called Knowing You Can Never Leave talking about the limitations in my future because I have a special needs sibling. You can read that if you’re interested.
Related – Knowing You Can Never Leave | On Growing Up With A Special Needs Sibling
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Do you have a special needs sibling? What was the transition of moving out like?