SPECTRUM SPOTLIGHT: featuring Maya

As a part of The Answer Inc’s Commitment to de-stigmatizing society’s opinion of persons with Autism & Other Developmental Differences, our Spectrum Spotlight Series was created to shine a light on exceptional Children & Young Adults everywhere - who… in-spite of obvious limitations, are ever committed to living their best life.

This month we are shining a light on Maya… a beautiful, strong, and intelligent 8 year old, living with Autism. And, in this episode of Spectrum Spotlight, Maya’s sister - Ryann - reminds us to: take action when there is need for change. To ask yourself - what am I going to do? How can I get involved? And if you have a sibling with a disability, if you have a best friend with a disability, if you know someone with a disability disability… take action.

Tell me about when you first learned that your little sister was Autistic.

It was like four years ago. My parents knew because they had gone to her IEP meetings and that's where they got their information, but when I found out it was kind of random. My mom was just driving me to school and she kind of said it and moved on, and I was like… wait what??? 

I already knew a bit about Aspergers, because my mom does a really good job of making sure I'm reading inclusive books and watching inclusive shows. But, I didn't know how much it was going to change the way my sister was treated in school and even our house.

A really good thing is that my mom started doing stuff, and researching more about disabilities in general. And one day, she was attending a class and I got to go with her, and the main thing that I learned is that disabilities don't define people. Like, I met someone with down syndrome, and they were like the funniest person ever, and I think it was important to note that when you meet someone - the first thing you shouldn't think is that their disability is who they are.

How did finding out your little sister was Autistic, make you feel???

Well, it was a lot to process… and to be quite honest, I'm still kind of processing little aspects of it now. But, the first emotion I remember was just feeling like I couldn't do anything. Anyone who knows me and my little sister knows that we are this close - like we are always together. We fight and we bicker like cats & dogs, but we always resolved it in like five minutes. No matter what though, I've always been her protector. Most of the time, I get us out of situations - like if something goes wrong or someone's being rude - I can kind of get her out and that kind of thing. But for the first time… I felt helpless, I felt like I couldn't do anything to help her out.

So, a really funny story is… on the day i found out, by lunch time, I had pretty much figured out that feeling helpless wasn't going to get me anywhere and it certainly wasn't going to help me help Maya get anywhere. But, when I got home… we were all pampering Maya and I was like Maya you can have my turns on the TV.  I think it was a little bit after Halloween, and I gave her my candy stash. So I’m giving her all her favorite candies, and Maya kept on going with it, and then she goes… can you buy me my own TV for my room, too?

That was really funny because we forgot - for like a split second - that Maya is still the Maya we knew and loved… she just had that different label on, and she's like… I will milk this?

Were there any changes that you felt prompted to make???

I mean one of the first big things that kind of came without me really thinking about it and internalizing it - and now that I can to take a step back I can kind of see that it came automatically - I was like well “now I AM an ally” like this isn't going to be something where I'm just kind of watching from the sidelines. I'm gonna have to jump in and help. 

I found myself doing small things, and it wasn't even just about autism. It was disabilities in general because I knew what it was like to have a little sister with a disability and I feel like why do we use the word disabilities in the first place? It sounds like some weird spots you get all over your face and your hand, but it isn't a bad thing. I think that's why it's important to normalize disabilities, because it isn't a bad thing necessarily.

What have been some of the victories on your sister’s journey??? 

Okay, so my mom pulled up with my little sister singing “Let It Go” and she couldn't get the words quite right because she was still having the speech therapy. Coming in the house… we knew what was happening and like the enthusiasm was all there, she’s dancing and she's frolicking and she was making noises - she just couldn't form the words. But then now… to see my little sister walking around the house singing songs constantly, going on and just reciting random stuff. She loves to watch YouTube videos, and I also like watching YouTube videos. But now… she is walking around the house telling us jokes from the YouTube videos. 

Another major victory, is that a while ago… she would be trying tell me a whole bunch of secrets, like all the stuff she wasn't able to really tell my parents - like when she was little, she would be trying to tell me that kids were laughing at her and stuff like that, and I would only know what she was saying because I knew my little sister.  Now, our problem is… when people are really being mean to her, she just be making up an extra story because now she loves to say oh, yeah, so and so told me this and they pushed me in the street and a car ran them over.

That’s been the coolest, cause I got to see my sister grow from kind of sort of telling me something… to her saying you would never believe what so-and-so did today.

What have been some of the notable challenges on your sister’s Journey??? 

As far as challenges go, it’s all the social stuff and there are so many. Like, everyone is constantly telling her… don’t move your hand like that, or don't move your eyes like that. Don't do this. Don't do that.  So I can only imagine what it would be like to constantly be thinking about every single thing you do and every single thing you say, and overanalyzing it… like how is that going to make someone feel, and what - if anything - are we trying to teach them. 

I think it's a lot easier to look at the person across the room from you than to look at yourself in the mirror and and look at what you're doing what you’re thinking. I think it's a lot easier for people to look at someone and say that person isn’t pretty, or that person is doing that, or this is wrong with that person… than to look at yourself and say I'm a bully, I'm insecure and that's why I reflect it on to others. 

Because, once you get to that mental state, we can figure a whole lot out… it is hard to get to the point where you can look at yourself and say this is why I'm doing this and this is why I'm doing that. It’s hard to accept that I’m reflecting my own issues on other people. It's just a lot easier to look at someone and call them names and draw conclusions.

When you think about Maya’s future, what do you think about???

To be quite honest, I want to say, I think everything’s just gonna be perfect and peachy, but I know it's gonna be hard, but I also know that Maya is quite literally the strongest person I know.

I know that she has some things that are gonna hurt her and change her… but I also know that Maya is the most fiery person and she knows when someone saying something to her that isn't right and she might not know how to say it.. but she knows it. 

She's really really really really really smart and not just on paper and pencil. 

I know it's going to be challenging for her, and it's going to be really really hard, but I also know my sister… and I know that she's going to be just fine. 

What is something that you would like to share with other siblings or people period???

I think I would say take action when there is need for change because my biggest pet peeve are people who watch the news and see horrific events and they sit down with the bucket of popcorn and say yeah, that's absolutely horrible… I wish that wasn't happening.

I mean, when I see something horrible happening… my first instinct is we have to do something. What am I going to do? How can I get involved? So if you have a sibling with a disability, if you have a best friend with a disability, if you know someone with a disability… take action. 

One little thing, for example… I noticed that people always say that it is so easy to stand up for somebody. But actually, it's really not… the truth is, it is a lot easier to be their friend. Even if it's just hey… want to hang out with me after school today??? or hey… can I walk you to your car after school??? Small things like that.

And they can turn into bigger things… like if you see a teacher saying something wrong. You know, as annoying as the class might think you to be, you should feel inclined to say something because if you don’t… then you're just a part of the problem.

We wish you all the best Jabril, and we encourage you to keep on living your best life… and we hope that others will find themselves inspired to do the same, as we share a bit of your journey with them.