Sophia James: Life as a Sibling of Someone with Fragile X Syndrome

Sophia James, a top 10 finalist in the latest season of American Idol,  delivered the keynote address opening day, May 29, 2020, of the 17th NFXF International Fragile X Conference Virtual Series. To help spread awareness of Fragile X syndrome and life as a sibling of someone living with Fragile X, we are making her keynote address available to everyone. You can view the full video or read the transcript below. There is so much in what she says — take the time to watch or read it. It’s well worth your time. And follow Sophia on Instagram @sophiajamesmusic.

Transcript of Sophia’s Keynote

Hi, everyone, my name is Sophia James. I just want to start off by saying how beyond honored I feel to be here and be able to share part of my story with you today. So thank you for taking the time to listen.

When I was asked to be one of the keynote speakers for this year’s Fragile X conference, I was filled with a combination of honor, excitement, and fear. My late mother Naomi Star was an active member of the Fragile X community and would attend this conference every year. She would always come back with stories of the inspiring speakers, informative lectures, and moving presentations. I am not an expert on Fragile X syndrome. I have not dedicated my life to researching it like some of the magnificent people here today. I have not studied it in university and I even find myself stumbling over my words when I try to explain exactly what it is to those who ask, because I so desperately want to get it right. I am not an expert. I am a sibling.

I think as a sibling of someone living with Fragile X, I have been somewhat subconsciously conditioned to sugarcoat my experience. That is, when someone who’s never heard of Fragile X asks me about my brother and what he’s like, I immediately highlight all the wonderful things about him.

While trying to avoid mentioning the challenges of Fragile X. I want the world to see him how I’ve always seen him. The warm, kind-hearted, loving human being. To be honest, it’s quite difficult for me to find many challenges to talk about when it comes to my brother. Nonetheless, I do want to be as frank as possible when I tell you about my experience as a Fragile X sibling, and everything that comes with that label.

So, without further ado, I would like to introduce you to James Wackerman. James is my older brother by seven years. He is indisputably my favorite person on the planet. He likes to play drums like our dad. And let me tell you, he can lay down a beat like it’s nobody’s business. He actually played the drums at the Fragile X conference a few years back and he killed it. Music is something that I feel really lucky to be able to share with James. It’s a connecting force unlike any other. He likes to watch movies, particularly movies where they are, quote, very happy at the end. He likes to watch certain movies over and over again. He likes to watch certain scenes from those certain movies over and over again. He loves quoting lines from his favorite movie characters over and over again. This is an activity that I love participating in. The two of us together could probably enact the entire sequel of the Muppet Movie.

He likes to listen to music. I have a whole Spotify playlist filled with songs that I know can immediately put a smile on his face. Whenever I drive him somewhere, I put this playlist on shuffle, and we have the time of our lives singing along to it together. James is pretty much the coolest brother I could ask for.

James was diagnosed with Fragile X syndrome when he was four years old. Since I am the younger sibling by seven years, I missed the diagnosis. I missed hearing the news that would change my family’s life forever. I missed all the massive adjustments that were parents had to make. I missed the panic that they experienced, much like many other parents. I missed all of that.

There’s an allegory for being a parent to someone with Fragile X. You spend your whole life planning a trip to Italy. And when you finally get on the plane and touchdown, the pilot says, Welcome to Holland. You look out the window and find that you’re not in the place you’ve planned. But with time you come to learn that Holland is beautiful, in its own unique way. Well, you see, as the younger sibling I was already in Holland, I had no idea about this Italy nonsense. I was just chilling under the windmills frolicking through the tulips and having a great time. So when I came into the picture, Fragile X seemed like a pretty normal deal. I didn’t have to make any adjustments. I didn’t have to sit anxiously through all the doctor’s appointments.

There’s an allegory for being a parent to someone with Fragile X. You spend your whole life planning a trip to Italy. And when you finally get on the plane and touchdown, the pilot says, Welcome to Holland. You look out the window and find that you’re not in the place you’ve planned. But with time you come to learn that Holland is beautiful, in its own unique way.

When my parents explained to me that James had Fragile X, and that he was a little bit different than most kids, the thoughts running through my own brain were something along the lines of, Okay, cool. What’s for dinner? James was just my older brother. And I loved him. And that was that.

People often asked me what kind of relationship I had with James when we were growing up. James is verbal. He can carry out coherent conversations, but not for too long. He likes repetition and simplicity. Because of this, I wasn’t able to bond with him in a way that most siblings do. We could never really gossip about our social lives. He couldn’t exactly give me any life advice. And he could do never pick me up from school. James and I, however, connected in different ways. Unlike most siblings, we never fought. James never bullied me, framed me for something I didn’t do, or argued with me. So it was easy for me to do the same for him. We would often watch movies together, over and over again, make up silly sounding words and laugh our heads off and run around the backyard together. It was a pretty good time.

When I was about five years old, we moved from Australia to the US. At this age, I was becoming a little more observant and aware of how others perceive me. I was in a brand new environment, and I wanted nothing more than to fit in. It was around this age when I started becoming slightly embarrassed about how James would behave in public. Though I knew he couldn’t control his restlessness or his calming, I was certainly conscious of the strange, judgmental looks my family would get from the grocery store clerk or the person passing us on the street. I began socializing with other kids on my own. I started having playdates, I began meeting other kids’ siblings, and recognizing more and more that James was not quite like everyone else. The worst was when my peers in their ignorance would ask me, what’s wrong with your brother? Nothing is wrong with him. Thank you very much. I was always quick to defend him. He has a disability, and he’s doing the best he can. I think it was probably at this point, that I knew that part of my role as a Fragile X sibling would be to try my best to constantly educate people about how ableism functions in our society, and ways we can actively try to get rid of it. Of course, I didn’t know how to articulate that as a child, but that was the general sentiment. All I knew was that it was always easy to stand up for James, because he’s such a good person. I look up to him in so many ways, and always have.

I started having playdates, I began meeting other kids’ siblings, and recognizing more and more that James was not quite like everyone else. The worst was when my peers in their ignorance would ask me, what’s wrong with your brother? Nothing is wrong with him. Thank you very much. I was always quick to defend him. He has a disability, and he’s doing the best he can.

Though James is the older sibling, he does function more as a younger sibling. As soon as I was sort of old enough, I was the one who would have to keep an eye out on him. When our parents were out. I would have to simplify things in order to explain them to him. I understood more than James did about the world as you and I knew it, and therefore I had very protective instincts towards him.

James was always my biggest supporter. I participated in a lot of performances. Growing up, whether it’d be singing, theater, piano, etc. and James would always be there to cheer me on. It was usually difficult for him to sit quietly after a long performance. I mean, who could blame him? I think that’s something that’s difficult for a lot of us. But my parents worked really hard with him on audience etiquette throughout the years. As he grew older, he got better and better at sitting through a performance without making too much noise. To this day, every time we make it to the end of the show, James never fails to remind us that he was a very good audience.

I often got to attend James’s performances too. He had many shows where he played drums in the school band, and he’d rock the house every time. My proudest moment was during James’s senior year of high school, when he won the title of Mr. Ram, which was a talent/swagger competition for male seniors at the school. The competition was filled with jock type boys who had tons of popularity points stacked up from over the years. The competition was circus themed. And with the help of some of his classmates, James put on a dazzling skit, where he played the drums while his pals pretended to be circus clowns. When they announced the winner to be James Wackerman I don’t think I had ever screamed so loudly in my life. It was as if he had won a Grammy. My mother wept. Our entire group of friends and family jumped up and down and cheered for probably 20 minutes on end. I had never felt such a fierce pride for anyone. I was so proud to be James’s sister. He had worked so hard and he had accomplished such an incredible feat.

My mother wept. Our entire group of friends and family jumped up and down and cheered for probably 20 minutes on end. I had never felt such a fierce pride for anyone. I was so proud to be James’s sister. He had worked so hard and he had accomplished such an incredible feat.

That’s the thing about loving someone with Fragile X, you learn to appreciate seemingly insignificant things at a much larger scale than you would have without them. My mom would always remind me of this. Our mom Naomi passed away from lung cancer in November of 2015. I was 16. James was 23. The both of us had dealt with grief before, as we had previously experienced the death of a couple grandparents. But nothing had prepared us for this one. I remember watching from the doorway, as my dad and Aunt read aloud the homemade booklet titled “Mom and James” to James. It was filled with pictures of the two of them together. And it explained in simple terms, that Mom was no longer going to be with us. This is Mom and James, it read. Mom loves James very much. Mom is not going to be able to be with James anymore. Mom is going to be in heaven with Grandma Barbara. It’s okay to be sad. We will miss mom very much, and so on and so forth. James understood it. That didn’t make it any less hard though.

I didn’t know what my role as a sibling was supposed to be from this point on. I was scared that since we had lost our mother, that I was supposed to now fill that role for James. But that felt unnatural to me. I’m his sister. It was a monumental and uncomfortable adjustment for all of us. I eventually learned that the best thing I could do for James was simply be there for him and let him know how much I love him. We had to somehow figure out how to navigate this loss. And I’m glad we had each other through it all. James will often bring up his memories of Mum. He’ll say things like, Mum loved to cook, when we have a particularly delectable meal, or Mum loved to take photos, when we fuss with the camera. James helps keep my mom’s memory alive in so many ways. And I can’t even begin to describe how proud of him she would be.

Like with any big life change, you rearrange, you try to make do and attempt to carry on with life. Adding someone with Fragile X into this mix can be a bit tricky. It’s hard enough changing things around for yourself, but trying to help James grow into that adjustment and understand the adaptation was a challenge nevertheless. I continued to go to school, and James continued to participate in his special needs work program. Life went on. We were doing all right. In the blink of an eye, I was graduating high school and heading off to UCLA to study music. James loves Facebook Messenger. He sends our extended family multiple messages every single day without fail. When I moved away to college, I was added to his list of recipients of these messages. This was mostly how we kept in touch, subtle reminders that we were thinking of each other and missing each other. We’d send words of encouragement, or he might let me know that he had a great time at his exercise class that day. When I would come home on breaks, he always greeted me with a big smile, and reminded me that I need to take the elevator up to the fourth floor. When I moved into my dorm, he was introduced to this elevator on moving day and had been fascinated with it ever since.

The following year, I got the opportunity to audition for “American Idol.” My entire family, including James, came to support me at the audition. It was such a full-circle moment, because James and I had grown up watching “American Idol” together. And now here we were experiencing the real thing. I was nervous bringing James to the audition, because I wasn’t sure if the whole thing was going to be too overwhelming for him. The set was filled with tons of people, lights, cameras, noise, and general chaos. I wanted him there though, because it was such a special moment for me. And he is one of the most special people in my life.

I was really stressed out that day. But much to my delight, James was great. He had his iPad and my dad there to help him out. And he didn’t fuss one single time. I somehow got through the audition without collapsing on the floor, and somehow won the judge’s approval and got a coveted golden ticket to Hollywood. James came to every single performance during Hollywood week. For me, behind the scenes, it was a grueling week, filled with vocal strain, little to no sleep, and tons of hard work. Whenever I’d catch a glimpse of James smiling in the audience, though, I was reminded that I had my biggest supporter right there with me, cheering me on, and that it was all going to be okay.

By some miracle I survived Hollywood week, and the 40 of us contestants that remained were sent to Hawaii to film the next round. This was where James got to meet his idol of all idols, Ryan Seacrest. At that moment, the whole thing was worth it to me. I didn’t really mind the possibility of being cut from the competition at that point, simply because James got to meet his favorite celebrity. James always got a kick out of Ryan Seacrest when we’d watch idol his kids. He listens to Ryan Seacrest this morning radio show every morning. One of James’s repeating phrases that he often says is Ryan Seacrest is the host, which in James language means that he thinks Ryan Seacrest is one of the coolest people ever.

Seacrest was indeed super cool. He interacted with James like the were old buddies, and James lit up like a firework. This photo is still the lock screen on my phone to this day. This was also the episode where I got to introduce James to the world and talk a little bit about Fragile X. One of the things you have to do as a contestant is get a bunch of b-roll. These are the snippets of footage they use of people dramatically looking to the left in slow motion, or walking through a field laughing with their family, etc. For my feature in this episode, they wanted to get some b-roll with me and James. I explained the situation to them, that James has a disability and there’s a chance he might get too overwhelmed or too anxious about all of this or not be able to pay attention or might get upset or this or that and so on.

Fortunately, the producers and camera crew were really understanding. And they said that if it gets to be too much for James, then we would cease the operation. Lo and behold, James was phenomenal. The producers would ask James a question, or ask him to say something to do with American Idol, and I would sort of translate it over to him. I think he was able to get through it because he felt comfortable talking with me. We’re symbiotic in that regard. No matter what kind of mayhem was going on around us, we find comfort in the company of one another. The crew ended up getting some wonderful footage of the two of us talking and hyping each other up. And they even caught a sweet moment where we gave each other a big hug.

I was shocked to find out that I had made it into the top 20 round of Idol. When the judges told me the good news, they also are peppered in the fact that I was still allowed to change my stage name at this point in the competition. Throughout the whole season, they had been heckling me to change my last name from Wackerman to something else. And I couldn’t blame them. I had always felt that Wackerman never quite suited me either. I had always known that I wanted to eventually change my stage name. And now that I knew that Idol would allow it at this point, I went for it. And I adopted the name of the person that had always been there for me, that always showed me love and support, and always reminded me of all that is good in the world. James, I can say with full conviction that I don’t plan on changing it to anything else.

So the top 20 round was supposed to mark the beginning of the live shows. But then a little thing called COVID-19 came along and ruined the entire world and how it operates. So we began competing from home. James was marvelous during all of this. He even got a shout out from Ryan Seacrest who in one of the at home episodes aired.

It’s been nice being back home with James. He keeps my spirits up during this uncertain time. And I’m reminded of all the fun times we had growing up together here. I ended up making it to the top 10 which was absolutely inconceivable to me. James helped me celebrate this achievement by congratulating me and giving me one of his sensational big bear hugs. I was so lucky to have been able to share my Idol experience with James, and I’m even more lucky to simply call him my brother.

Realistically, I think that most of the challenges that I’m going to have with James are yet to come. Since James cannot live or do many things independently, I’m inevitably going to have to be his primary decision-maker one day. I think there are going to be a lot of moments where I’ll be scared of making the wrong choice or worried that I’m not doing enough or frustrated that I may have to put my own life on hold at times. I’d be lying if I said I didn’t worry about James’s future and how I fit into it. Being a sibling of someone with Fragile X is an immense responsibility that many of us didn’t sign up for. But it is a challenge worth undergoing. Because of James, I see the world as a benevolent place. I know that love is real, and that there is beauty and simplicity. I know that each and every person is different in their own way, and that those differences should be celebrated.

Because of James, I see the world as a benevolent place. I know that love is real, and that there is beauty and simplicity. I know that each and every person is different in their own way, and that those differences should be celebrated.

I couldn’t have possibly asked for a better big brother than James. He makes the world a great place to be. Thank you.