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. 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’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 where people with autism are 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 could be.
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 that.
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.
I know that this was more self-centered than a post about how I grew up, but those are to 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 because that is something I carry into every relationship I’ve ever had with people. 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.