My name is Todd Damrosch…I am 15 years old and a freshman at Half Moon Bay High School where I play football and baseball. I guess you would say I am a pretty typical teenager. I am really into filmmaking, and this year had the honor of filming and editing the video for this year’s Starry Starry Night. I am also incredibly honored for the opportunity to tell you a little bit about Alex and our relationship. I am an only child…so I don’t know what it feels like to have a brother, but I can’t imagine that I would be more connected to a brother than I am to my cousin Alex Bettencourt.
He was 4 when I was born. He has something called Charge Syndrome…it means he was born with multiple birth defects, and he basically doesn’t talk (unless you really know his language) and he is deaf and blind. I hate saying that, because I feel like it automatically creates a picture of Alex, that is so much different from what I see. But I also want to be honest that Alex has a lot going on and faces significant challenges every single day. I know this has had a huge impact on my family, on my Aunt and Uncle, my parents, my grandparents, and yes, on me too. When I knew I was going to speak at Starry Starry Night, I tried to reflect on growing up with Alex, and to be honest, there wasn’t anything dramatic or big I could remember from when I was younger. Alex was just…well, Alex. He was my big cousin. Someone I looked up to…someone I had fun with. We were “the boys.” He was Batman, I was Robin. I feel like I have always known that he was tougher than anyone else I knew but I really had no idea just how tough he was. I thought of him when I got stitches in my lip my first day of pre-school, because I knew crying over 6 stitches was something Alex just wouldn’t do.
I know now that he had more than 30 surgeries by the time I was born…but I never knew the details. I didn’t realize that he had a feeding tube when I was little, I just thought it was cool that he had 2 belly buttons and wondered why I didn’t. When he had major spine surgery, I visited him in the hospital on the way home from a baseball game. I was old enough by then to start to understand that maybe life wasn’t fair, if I was playing baseball, and he was getting screws put in his spine.
Whatever Alex has had to adapt to, I tried to adapt to also. When Alex lost his sight, it was right before my 10th Christmas. My mom sat me down and we had a very serious talk that there might not be Christmas that year. I remember thinking that it wasn’t that big of a deal, that all I wanted was for Alex to see. Christmas wasn’t Christmas without him.
At some point, things started to shift. I got bigger physically, and I developed “typically” and Alex didn’t. I started to be more like the older cousin and found myself being very protective…. and not just of Alex, but of others with special needs. It made me angry when people would stare, it hurt that they didn’t see what I saw… the happy, smart, funny dude that I taught to fist bump and that gives the most epic hugs where he squeezes so hard that it feels like he is going to pick me up, no matter how big I get. I realize that people stare because they don’t know what I know. I think that being raised in a family with someone disabled has made me see the world a little differently. In middle school, I kind of got a reputation for being really good with the special needs kids.
To me it wasn’t a big deal, and to be honest, I think it’s kind of sad that a middle school kid being kind to special needs kids was something to be celebrated instead of expected, but it was. In 8th grade I decided to be a teacher’s aide in the special needs class. It was a great decision and experience, and I’ve been told I made a difference for those kids. That makes me happy and I know that is because of Alex.
And Morgan Autism Center is a huge part of that. I have no memory of Alex going to any school other than Morgan Center. I just knew Alex went to a “special school”…I didn’t know how true that was, but now I do. I got to spend some time at Morgan Autism Center at the new campus during my spring break this year to film the video for Starry Starry Night…and I noticed some things.
It is kind of hard to explain, but I honestly could feel the energy as soon as I walked through the doors of the office. Maybe it is cheesy to say that there is “love in the air”….but there kind of is. The amount of love, patience, and understanding that I noticed the staff have with all of their students was kind of unbelievable to me. From staff running and laughing with a student, or hugging and comforting, or just sitting quietly and watching carefully and keeping someone safe while they worked through a moment.
I had never thought of teachers at a school having such a deep connection and love for their students. I know that it must also be challenging at times. I know from being with Alex, that he can get overexcited or frustrated and that can lead to a hair pull, or what my family calls a “targeted hug.” But even though I know in my heart that Alex doesn’t mean to hurt me, I know it can be difficult not to take personally sometimes and I really appreciate the Morgan Autism Center staff, especially because they have chosen this for their work and were not born into it like me.
And it wasn’t just the staff love for the students, but I could also see the love the students had for their teachers. I could feel the trust, and it makes me so happy to know that Alex can feel that too. It is hard for him to navigate now that he is blind. He doesn’t get around like he used to, so when I saw him in his super high tech walker with the staff, smiling and motoring independently it meant so much to me, and I know to him too.
I know that I wouldn’t be me if Alex wasn’t Alex and I know that Alex wouldn’t be Alex without the Morgan Autism Center. So I would like to take this opportunity to thank all of the wonderful staff members for what they have done for Alex and all of the other students and clients at MAC. I’d also like to thank my aunt, Moriah Bettencourt for trusting me with this responsibility and Brad Boardman for the opportunity to be the sibling speaker as a 15-year-old cousin. And last but not least, I would like to thank all of you for being supporters of this amazing program that means so much to families like mine.
By Todd Damrosch-Starry Starry Night 2018 Sibling Speaker