Hi there! My name is Leila and I am 16 years old. I have two parents; Debbie and Michael as well as an older sister named Nola. I'm also a twin to my favorite person in the world; Taylor. Taylor has autism and is non verbal but inspires me everyday and I love him with all of my heart. This is an absolute honor to be able to share our story on Miggy's blog, as well as spread awareness about autism.
Miggy: Hi Leila! Welcome and thank you so much for emailing me about your amazing family, including your best friend and twin brother Taylor, who also happens to be autistic. At what age did you first start to realize that Taylor was different from you and other kids? Was there a particular moment or was it gradual? And do you remember having any particular feelings about this realization?
Leila: My mom has always told me that by about the age of 3, I had noticed that the people around me could communicate to me with words but Taylor could not. I asked her why Taylor couldn't talk once and she simply told me that he wasn't able to - but could communicate with me in other ways. And with that, I said "okay!" and went off to play. Taylor's inability to speak verbally was something I had grown up with, so to me it was nothing out of the ordinary. I still viewed him as "normal" and he was my best friend nonetheless. Once I got into grade school, I did, and even still do have these moments, where I'd wish he could speak to me verbally and we could talk to each other about something as simple as what we did at school that day. I would sometimes find myself jealous of my friends and their siblings, how they could talk to each other anytime they wanted, but would choose not to because of whatever silly drama they found themselves in. I felt like they took advantage of something I couldn't have with my own twin brother. But with all of these thoughts, I constantly reminded myself that Taylor and I can still communicate, just not in the same ways as my friends could. And I'd always come to the conclusion that our relationship is still just as special, if not more.
Miggy: Can you talk a little bit about your parents and how they raised the both of you and navigated having children with different strengths and needs? What have your parents taught you about autism, differences, as well as your brother and you?
Leila: My parents have done such a wonderful job at raising us. Even though no one prepares you for an autism diagnosis, my parents made it seem effortless. My mom would always make sure that when Taylor had his countless amounts of speech therapy, either at home or outside of home, that I was occupied or entertained. When speech therapists would come to our house, I was usually included in some way so that it could be fun for me too. She would also make sure that she gave time for just me and her, while my dad and Taylor had some "father son bonding". However, if me or my older sister had some kind of performance at our school, we'd always have either my mom or dad with Taylor so if he needed to step out for a few minutes, he'd be able to do so while the other parent could still be able to watch our performance without missing anything. During Halloween, I would always go out with my friends for trick or treating, but my parents would always meet us with Taylor in the later hours so that he could be apart of the fun too. They made sure we were both included in the same activities and didn't let Taylor's disability stop him from that.
My parents have taught me that just because there's an obstacle in the way, you can't let that stop you from doing what you want to do. You'd think with Taylor's disability, it would create many challenges causing him to miss out on a lot of things. But they didn't let his disability hold him back. Even now, my brother and my dad go to the gym every single day and Taylor will go on almost every machine. They also go bike riding and swimming (my brother is a fish), during the spring/summer. In fact, he learned how to bike, roller skate, and swim before I did. It's amazing how much he's able to do all because my parents didn't let his disability stop him from doing the things I was able to do.
Miggy: As Taylor's sister, what are your biggest worries you have for him? What are your hopes for Taylor as you both grow and get older?
Leila: As Taylor's sister, I worry so much about where he's going to end up as a young adult. It's almost inevitable he'll have to end up in a residential home for adults with autism, and although I know it's the best option for him, I don't want him to think we forgot about him. It'll take some getting used to for both us and Taylor, but I'm sure in the end, everything will work out. Taylor is very tolerant to change so I'm sure he'll be fine, but it's something any family would be concerned about.
My hopes for Taylor and I for the future are that we're living in a little house or apartment together, out of New York City, and happy. My dream is for Taylor to live with me when we're older, but everyone thinks I'm crazy for thinking that! I think it would be a lot of fun and also I'd be able to see his beautiful smile everyday. I also hope that Taylor continues to learn more "life skills" and excels at them. At the school he goes to now, they are teaching him skills that he can use in everyday life such as; folding laundry, cooking certain meals, making a bed, and so much more. This is not only fantastic because he's learning things that will benefit him in the real world, but when we own our own place together, he'll be able to do all those tedious chores while I get to watch TV! ;)
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Leila: There have been many funny conversations and moments that only our family will understand. One that stands out to me is the time where Taylor's school got our family tickets to see The King and I as they were having a special showing for special needs kids that weekend. The audience was filled with kids with autism and I could barely hear what the actors were saying because everyone was making their own special noises or talking a little too loudly. But it was something that you just had to laugh about because if any "typical" person were to walk in that room with no context, they would've been very confused. Each family in that auditorium understood each other that day, and instead of glaring at someone because their kid was being too loud, we gave each other compassionate smiles. I can't exactly tell you what The King and I was about.... but it was still a great time!
Miggy: Leila, when you first wrote me two things immediately impressed me: 1) You're 16 and 2) you're a filmmaker. I have never had another teenager email me about participating in the special needs spotlight (although one teen did participate with her mother) and further, it's really amazing to see someone your age already making films and documentaries to spread awareness about autism. What do you hope people learn from watching your films?
Leila: I've been interested in filmmaking since I was about 7 years old, and ever since then I always knew I wanted to incorporate my brother into my films somehow. I started to make documentaries about him around 3 years ago and it was for the sole purpose of spreading awareness and showing people that kids with autism aren't strange in any sort of way -- they're just like us. I wanted kids my age that had siblings/family members with autism to watch my films and know that they weren't alone. I found that when I explained to my peers about my brother's disability, they would look at me with sorry eyes and act like it was a negative thing. Making these documentaries allows me to show people that it isn't a negative thing at all, they just face certain obstacles and challenges that they may need a little more help overcoming. My main focus is to educate people so that people with any sort of disability can face less ignorance in the world and feel more confident in their own skin. My favorite documentary I've made is called Speaking Without Words which shows the strong relationship between my mother and Taylor. Once it was screened, many people at my school came up to me and told me about their family members with autism and how the documentary really touched them. After making that documentary, I realized that this was something I was truly passionate about and I felt I was meant to share Taylor's story. I hope to continue spreading awareness to not only my community, but all around the world.
Miggy: Growing up with Taylor over the years I'm sure you've had many opportunities to teach your peers about him and about autism. How can peers approach and respond to Taylor? What do you want people to know so that they might be more respectful and educated when it comes to interacting with a person who has disabilities?
Leila: Luckily, I've had very kind and understanding friends who have approached Taylor in the sweetest ways they know how. If I were to give someone advice as to how to approach and respond to Taylor, I would say act like he is one of your best friends. Although Taylor cannot speak back verbally, he can fully understand you. Kindness always goes such a long way and it's much appreciated. I always think very highly of a person who is respectful to someone with special needs without having to think twice about it.
I would also tell people that the number one thing you should not do is stare at Taylor, or any other person with special needs, when we are in public. Every time I walk outside with Tay, I face countless amounts of stares when he does one of his "impulses" (fidgeting hands, picking up a piece of trash on the ground, etc) and it makes me so angry. I always try to tell myself not to pay attention to it and that it doesn't matter, but it's hard to ignore. I would mainly just say; being considerate and respectful can be stronger than words, and it's important that you treat Taylor, as well as any other person with special needs, just like you'd treat anyone else.
Miggy: What do you love most about Taylor? It can be a personality trait, a memory or just something other people might not know.
Leila: What I love most about Taylor is his beautiful smile. When he smiles, his eyes sparkle and it will light up the whole room. It makes me feel so special because it feels personal, almost like it's just for me. He can make a person feel so loved just by him looking into your eyes and revealing that sweet grin. At the most random times, he will lightly grab my face and give me a kiss on the cheek and I feel that it's his little way of telling me he loves me, since he can't say it verbally. I cherish those moments and it makes me feel like the luckiest sister in the world that I have him as my twin brother. He can make me laugh like nobody else can, and he definitely knows how to get on my good side so I'll give him whatever treat he wants in that moment. Sometimes, when he gets in trouble with my mom, he'll run into my room and shut the door because he knows I have his back and that I'll protect him. It's another reminder that we are indeed just like any other brother/sister sibling relationship. I can safely say that he is my best friend, as well as my better half, and I wouldn't trade him for the world.
Miggy: Having a brother with autism gives you a unique perspective that many of your peers may not have. What do you think is the most important thing you've learned from having a brother with autism?
Leila: I have definitely learned to how to have a lot of patience, but most importantly, how to love unconditionally. Taylor has taught me that we may have our flaws and our own set of challenges, but we are all still people in the end. He's taught me the importance of judging people by their character and personality, rather than their appearance or their "quirks". He's shown me how to focus on ability rather than disability as well as find the happiness in everyday life, no matter how simple.
My brother is anything but "normal" -- he is extraordinary. Taylor has given me the gift of getting to be his twin and live life with him, and each moment we spend together is better than the last. I love being his twin and I don't know where I'd be without him.
Leila! That was fantastic. You are not only a great sister, but wise beyond your years. You said so many things that I found myself nodding along to as I read. First, how amazing is it that you're using your art as a way to show people that Taylor having autism isn't sad or something to pity? That change in mindset makes all the difference in the world. Also, I love your advice about how to respond to Taylor and how to treat him: "...it's important that you treat Taylor, as well as any other person with special needs, just like you'd treat anyone else." Yes. When in doubt, just treat a person with a disability like anyone else. This may seem obvious, but sometimes when a person is nonverbal people assume they can't understand you and so they ignore them or talk about them like they're not there. (I've been guilty of that myself!) And for the love, if you're a grown-up person lets try to get this staring thing under control. Small children are one thing, but craning your neck as as a disabled person walks by? Not cool. Thanks again Leila. I hope your spotlight will encourage other teenagers, or people from a different special needs perspective to reach out to me and share their story. Give your brother a big hug from me.
Thanks everyone! As always if you or someone you know would like to participate in the special needs spotlight, please email me at thislittlemiggy at gmail dot com.
Also, take a few minutes to enjoy Leila's amazing mini documentary below! XO Miggy
Speaking Without Words from Leila B on Vimeo.