By Melissa Russell
“My childhood was lonely and difficult,” recalls Paula Orrego. “I was bullied for being different than my peers, but they couldn’t verbalize what made me different, so they defaulted to the easy things – ugly and fat – their favorite thing to call me was ‘weird.’”
That’s what life was like for Orrego, a graduate student clinician in Emerson’s Speech Language Pathology program. As the lead author of a clinical paper entitled “A First-Person Account of Developmental Language Disorder,” for the American Journal of Speech Language Pathology, Orrego brought her personal perspective of growing up with DLD, with which she was diagnosed in early childhood, and continues to be affected by it as an adult.
The paper, co-authored by Karla McGregor, a speech language pathologist (SLP) and DLD researcher, and Stella Reyes, the SLP who diagnosed and treated Orrego, defines DLD as a prevalent neurodevelopmental condition in which learning, comprehension, and expression are significantly limited as compared to same-age peers. It is typically diagnosed in childhood but persists through adulthood, with impacts changing as the person learns communication skills and faces challenges in different social and professional contexts.
We asked Orrego about her experiences growing up with DLD and how it led to her decision to become a speech language pathologist. The following interview has been edited and condensed for length and clarity.
Tell me a little about yourself.
I grew up in the San Francisco Bay area – it was a wonderful place to grow up. We are Peruvian and Spanish was my first language. Now I live with my fiancé and parents in Washington State, which is so beautiful because it rains so much. Everything is so green, so alive, and I can see the mountains from my window.
When did DLD first become an issue for you?
My mom noticed something around 2 years old. I was not speaking beyond one-word utterances. If you look at what the milestones are for 2 years old, you’ll see they should be able to say phrases or sentences, they should have 50 words in their vocabulary and start conversations using spoken language. I wasn’t doing any of that.
They brought it up with the pediatrician, but the doctor made a huge mistake by attributing it to bilingualism, which is why I didn’t get help until kindergarten, which is considered kind of late. We know now that the earlier you get a child into speech therapy, the better the outcomes.
What was the experience like for you?
You know what you want to say, but the bridge between what’s in your mind and what’s coming out is broken. My therapist described it to my parents as ‘It’s like Paula has a file cabinet in her head. Most children and adults can open the cabinet and get the word they are looking for. Paula has to go through every single file to find the word she’s looking for.”
I was always a storyteller, and one of the things that stood out to my parents was that I would share hours-long, rambling stories that never ended. They would make sense to me, but not to my parents.
I quoted movies a lot because they perfectly encapsulated the emotions I felt in the moment, and they were understandable to other people. That’s another sign of DLD – memorizing things and quoting them. I hoped my peers would see me as funny and likable, but it was seen as a strange thing to do.
What happened when you started school?
My earliest memory is trying to explain myself, but the teachers lost patience and put me in a time out. That was the easiest thing for them to do, and there were several instances of that. School services weren’t really helpful. They put me in a room with children with different language difficulties – one peer had selective mutism and another had cerebral palsy. Those children had vastly different needs. The SLP told me to stop talking so much because she wanted to hear from the other children. How can a child with language problems improve when they aren’t allowed to speak in speech therapy?
The school SLP referred me to an outside bilingual SLP who evaluated me at a private hospital. She did my intensive speech therapy, and essentially taught me the concepts that children naturally pick up. One of the activities I remember very clearly because I struggled so much was sequencing. She had cartoon cards and would line them up to tell a story – a beginning, a couple of middles and a clear ending – stories like how to make a peanut butter and jelly sandwich. I would always mix up the middle and ending. She was very patient –first you pull out the bread, then you pull out the peanut butter and jelly, then you start eating it – I had to figure out the order of events.
What about middle school and high school?
I got into sixth grade and things became more difficult. It became very apparent to me and my family that I needed extra support, and I got accommodations for school. It was helpful, but outed me as a disabled student. I was absent from the room when my classmates took their tests and I was put into a quiet room. I was already being bullied, but this gave bullies something else to pick on me for.
I had a teacher who told me to join a debate team to develop my skills and keep up with discussions. I think it did help with speaking skills but when I was asked to judge debate tournaments, I couldn’t do it at all. The back and forth overloaded my brain and I ended up huddled in the hallway in a panic attack, unable to continue.
How has it impacted you as an adult?
DLD has impacted the way I approach studies at Emerson. When I read my textbook, I don’t just highlight, I write notes in margins and copy what is important into a notebook. My assignments take longer to complete than my more neurotypical peers. I have to get started early on assignments because I need a lot of time. Socially, you could talk to me and my mind could shut down because I get overwhelmed with what you’re trying to tell me. You could give me a multi-step procedure and I wouldn’t be able to follow it if it isn’t written down. I’ve just had to come to accept that in my life there are some things I’m better at than others.
How will your experience shape your approach as a SLP?
It is something I am passionate about, helping children like me have a voice to express themselves, the opportunity to be heard. Being on the other side of the therapy table will help me bring deep empathy to my clients. I know DLD can look different for different people.
My old speech therapist told me children with my issues often aim low, for careers that don’t require a lot of talking. It is easier on them emotionally, and they won’t struggle as much. But I think we should see if there is evidence of that and change those statistics. If it isn’t, let’s get that out there to bring hope to parents and children alike.