This is going to be a hard post to write. Not because I don’t want to talk about this stuff. I just don’t know how to write it out in a way where it isn’t all just word vomit.
This is something that NO ONE TALKS ABOUT. Seriously! Everyone seems to focus on the idea of a curing every disability out there rather than think about what is going to happen to the people that have them. It’s like humans haven’t gone through the first stage of grief. Everyone is just in denial that this is a real thing that people have to live with!
Okay, I’m getting ahead of myself. I don’t want to give you a bunch of general information. I’m just going to tell you my experience with this situation.
I will never be able to sum it all up in one post because there’s far too much to say. I’m gonna go at it one topic at a time.
So let’s start with this one:
Knowing you can never leave.
I will never leave Atlanta. Ever. No going to an out of state grad school. No moving out for my dream job. Never.
And I’m fine with that. I’ve accepted it. I’ve mentioned this before, but if you don’t know, my brother has autism. Like pretty severe, nonverbal autism. Not the kind where you hear miracle stories about people with autism functioning independently in the real world. It’s the one where he will need someone to take care of him forever.
I still think we’re lucky. After meeting so many people in this life, it could be significantly worst. Mysoon can walk. He can see. He can communicate in his own way even though it’s hard for him. It could be a lot worst.
So let’s hear a story
This is really true. My cousin’s best friend is in a very similar situation as me. She’s a first generation American from Japan. She has two brothers, one with autism. Her dad runs a business and her mom stays at home taking care of her brother. It’s scary how much my life parallels to hers.
She’s a few years older than me and has made completely different choices. She did stay in Atlanta for college, but she didn’t stay at home. She studied abroad and worked and didn’t come home very often from what I hear. Right now, she’s teaching English is Japan and won’t be back for another 5 years.
When my cousin went to the airport to see her off, she asked her friend’s mom how she felt about it, and her mother replied, “We’re used to this by now.”
Here’s how this relates to me
I could never make the choice she did. I think it’s brave but selfish. She felt that her situation was holding her back and did everything to escape it. I’m the opposite.
Can you imagine a parent putting the weight of the world on a five-year-old? Because that’s what my dad did. He’d always tell me and Zidan (my other brother) that we would have to make more money than other people, that we’d have to take care of Mysoon for the rest of our lives, that our marriages would probably end in divorce because taking care of someone with special needs raises the odds of that….(yeah…I get my bluntness from my parents. They never sugarcoated anything)
I will probably never leave Atlanta. I’ll stay here for the rest of my life with my family.
And honestly…I’m fine with that.
I am lucky to actually love the city I grew up in. I know that if things were different, I’d be one of those people who would move to New York or LA only to come back after realizing that their home city is awesome! It’s saved me a lot of time.
Whenever I think about what could’ve been, I don’t feel bad because I know that I’m happier this way. I wouldn’t be as happy being away from my family. I have an obligation to them. This is something that most people can’t understand. This is more of a Bengali or Indian thing than a special needs family thing.
The reason my cousin and I were talking about her friend was because of her situation. She’s almost done with college and wants to travel, but she helps her parents pay their bills. They need her. I’m lucky that my dad went to college here and has a job, but most immigrants aren’t so lucky. We were just talking about our obligations to our families and how we could never make the choice she did.
Let’s fast forward to another conversation I had with a friend few weeks ago. I was sort of upset with her because I don’t think she’s living up to her full potential. She’s taking the easy way out. Somewhere in the discussion, I said, “I think you have every opportunity to be adventurous, but you’ll always play it safe.”
Then she asked me, “What about you? Are you adventurous, or do you play it safe?”
I said, “You tell me,” because I genuinely didn’t know.
She wanted my answer, so after some thought, I said,
“I’m an adventurous person, who has to play it safe.”
That pretty much sums it up. I don’t think that’s a bad thing. I’m too stubborn to let this get in the way of my dreams. I just think it will help make smarter decisions in terms of my finances and goals. It already has in many ways.
What I’m saying is that there is and always will be a mental block in everything I do. I have a mini panic attack whenever I think of taking that Disney trip with my friends this fall or leaving the country this year. There will always be this wall that I have to push through to make decisions for myself, whether that’s moving out or making a stupid decision because I want to.
I think most siblings of people with special needs have this idea that it’s all or nothing. That either you have to do everything for your sibling or leave. I don’t think it has to be that way.
Do I wish things were different?
No. Never. I’m not the kind of person who likes to dwell on what could’ve been because I’m extremely thankful. This has only added to my life, but I do think about what I would do if I had the choice to change things.
If you haven’t guessed, my parents are very blunt and depressing (hence I am blunt and depressing), so I grew up hearing about everything I would have to do if they died. If my parents died right now, I wouldn’t have time to process their deaths because I would have to think about all the logistics that would need to be sorted out. I’ve thought about this for years even though I don’t think it’s going to happen. I don’t always expect the worst to happen, but I was raised to be prepared for it.
Since planning this blog post, I have been thinking about what would happen if I was the only one left. This happened to someone we know of in 2012. She came home with her house burned down, husband and children dead with nothing left. It was really sad and I started thinking about it. What would I do if that happened to me right now?
I’d just float away. I’d leave and never come back.
Which is why I’m glad I can never leave. Mysoon grounds me in so many ways. There are so many people my age who have no idea where life is going, thinking of the endless possibilities. My life doesn’t have endless possibilities, but possibilities, just the same. I know that I’ll be in a place I love with people I love. I have plans to navigate around my situation and do all the things I’ve dreamed of. Knowing this has only made me more responsible and plan things better.
I’m more than content. I’m excited for what’s to come.
Well, that’s it for now. I know that this was a more self-centered post rather than a post about how I grew up, but those stories will come. People like me don’t really get a chance to be self-centered. I’m not comfortable talking about myself. (One of the reasons I started this blog is that I need to learn how to talk about myself.) I do not like being paid attention to, but I need to get out of my comfort zone.
If you know anyone with a special needs sibling, send this to them. They may have a completely different take on it than me and that’s fine, but I know I wish people talked more openly about this.
Also, please leave a comment below. I would really love to hear what you think.
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This is so sweet and inspiring! I can relate to a lot of thing you speak of, and it’s very heartwarming for you to put your family first with an autistic brother. I’m glad this blog is a type of outlet and that you discovered that it doesn’t have to be all or nothing. ?
Thank you!
Hi,
I just stumbled upon this on Pinterest while looking up Special Needs Sibs. (I’m a Sib if you haven’t guessed already) I think you can understand the significance of finding a piece of anything that represents something even remotely close to your own experience being a sibling to someone with Special Needs. I have 5 siblings including Becca (who has a severe form of epilepsy that also causes severe developmental delay and is mostly non-verbal) and not one of the “neuro-typical” siblings can relate to this feeling of obligation I have. Your tittle drew me in. Knowing I can never leave is something no one else can understand! Being an adventurous person who has to play it safe. I could never (and still can’t) understand how my other siblings can just go off to college, or any place. “I think it’s brave but selfish” . Do I wish that I felt the same lack of obligation, occasionally, on a rough day. But they are missing out on the world that Becca and I have created for ourselves. They don’t have the ability to be a grown adult, who didn’t have to leave the childhood magic behind. They can’t stand to listen to Barney, but I never stopped, so I can listen all day and not blink an eye. In fact I sing and dance along, sometimes she even has to tell me to stop. I get to see the magic of everyday life through her eyes and my own. Why would they not want to be around? Sure she can have days where she can be more than a handful. She requires patience since her brain doesn’t work anywhere near as fast as theirs. But they also grew up with her, so why don’t they already know these things. How is it that I am the one who works with her every day, and is at home with her at night. Why do my parents have no problem asking me to do these things, but “could never” ask my siblings. 3 of my siblings are older, for reference. Becca is 15 months my junior and we have a 16 year old half sister. Our youngest sister is definitely a huge help, more so than anyone else. But she doesn’t live with us, and so she doesn’t get how to be “on” all the time. She seems to be the only one who has figured out, like you said, it’t not an all or nothing type of deal. I don’t have answers to these questions, and most likely never will. I am the kind of person who likes to understand someone’s position, see things from their point of view, as I want people to do for Becca and I. So it really bugs me that I can’t figure out their view on this. But I guess they don’t understand my view, and have never tried to, so it at least shows they are a different type of person (lame explanation in my book). Anyways, I have been searching to see if there was anyone else like me out there, who felt like this. You have shown me that there is. Thank you, for writing this and letting me know I’m not alone, and spreading the word about growing up with a ‘sib’. It’s hard at times, but she’s the best thing that ever happened to me!
Keep on keeping on!
(Sorry for the novel, once I start with this stuff it’s hard to stop!)
I remember reading this right after you commented a few months ago. It was right after I came back from Florida and I was downstairs with my brother and cousins eating pizza and looking through old photo albums. Reading this on my phone made me want to cry because I relate to you so much. My other brother Zidan is probably more involved than your other siblings, but he doesn’t have the same relationship as I do with Mysoon. He understands the feeling of knowing that we can never leave Atlanta, but he doesn’t take as much responsibility with Mysoon. This will hopefully change once he’s older, but I get what you’re saying. I also have every Barney and Winnie The Pooh song memorized. I sing them all the time with Mysoon. It’s second nature to me now. It’s nice to have another kindred spirit out there.
Last December, I traveled to Bangladesh for three weeks, it was my first time out of the country and I had never left Mysoon for that long before. I wish I could say that he handled it well, but that wasn’t the case. It was really bad and I’m going to write about this in another post, but I didn’t feel guilty. I thought I would feel terrible the entire time because I felt so guilty when I went to Disney World for a week, but I didn’t in Bangladesh. A few weeks ago, I went to Canada for Spring Break and he handed that so much better. He was starting to get used to it. I had always dreamed of traveling and I knew that this was an obstacle I had to get through, but going through it in real life was so totally different. Not feeling guilty was certainly the first step for that. Like I said in the post, it doesn’t have to be all or nothing.
I’m so happy this post resonated with you. I have no problem reading novel-length comments. I hope you keep reading.
Thank you for writing this blog.. I have a special needs sister and we live in NY.
Those bits about “I’m an adventurous person, who has to play it safe,”
“There will always be this wall that I have to push through to make decisions for myself, whether that’s moving out or making a stupid decision because I want to,”
“I’m not the kind of person who likes to dwell on what could’ve been because I’m extremely thankful. This has only added to my life, but I do think about what I would do if I had the choice to change things,”
as well as your last point of being grounded by Mysoon and navigating the choices you do have while balancing it them with your situation making you a more responsible individual…. really hits it on the head. It resonates with me so much. I don’t feel so alone and misunderstood now.