A mop of blond hair wiggles in his seat, curiosity sparkling behind blue-framed glasses. Four-year-old Phillip is a bundle of energy, but speech pathologist Jen Ferreira, M.S., C.C.C.-S.L.P., is undeterred, working patiently with her young student. Today, they are working on his “K” and “L” sounds.
Pronunciation of words. It seems like such a simple thing to most, a skill taken for granted by many. For Phillip’s family, it’s something once surrounded by uncertainty.
Phillip was born with several physical and developmental delays affecting things like vision and speech. In his early months, doctors suggested the family work with Early Steps of West Central Florida
, a program led by Johns Hopkins All Children’s Hospital, for early intervention services. Through this program, Phillip started physical, occupational and speech therapy services near the family’s home in Largo.
Even with therapy, Phillip was largely non-verbal, saying only a few words like “mom” and “more” and mainly relying on sign language to communicate. At just over 3 years old, his private in-home speech therapist suggested evaluation for an augmentative and alternative communication (AAC) device–a tablet-like electronic that helps people with speech impairments communicate.
“We didn’t know what was possible or if he would be able to talk,” explains Phillip’s mom, Brenda. “Because Phillip doesn’t have a diagnosis, we don’t know the path he is on.”
To determine Phillip’s current ability and potential, he completed an evaluation given by speech pathology
, physiatry and occupational therapy specialists in the AAC Clinic at John’s Hopkins All Children’s Hospital.
During that time, he quickly established rapport with Ferreira. As they worked through play-like exercises, he started to imitate the words she was saying. It was a glimpse of what was ahead.
Soon after, Phillip began an intensive therapy routine with Ferreira consisting of 30-minute sessions three times a week, eventually shifting to two 45-minute sessions each week.
“We started by building a vocabulary and then going back to focus on sounds,” notes Ferreira. “It seems backward, but it helps take the pressure off of speech. If kids are afraid, they are pronouncing something wrong, they may not want to say those words.”
In just a few months, the results were already noticeable. He could say multiple words, identify objects and started to be able to communicate his needs. A year later, it’s progress his family considers to be nothing short of incredible.
Of course, this progress didn’t happen without lots of practice and hard work.
After each session, Ferreira sends Phillip off with homework. The assignment varies from week to week based on his progress and reinforces the skills worked on during that session. One such exercise uses a lollipop to help work on “L” sounds. There are also flashcards with various words written on them–which Phillip’s older sister likes to use while playing teacher.
At ages 6 and 3, his twin older siblings and younger brother are still too young to understand why Phillip needs extra help, but that doesn’t stop them from playing together like all siblings do. Typically in a good mood, Phillip is fascinated by how things work and has a knack for picking up musical tones and singing along. Through all of his challenges, he is the most concerned with making sure everyone is happy.
“One of the first things he would say is, ‘Are you happy? Happy?’” Brenda says. “If he would see my face getting frustrated, he would look at me and go, ‘Mommy happy?’”
The speech delay is just one part of what doctors consider to be a broader condition. Phillip has had several surgeries and gets an annual MRI at Johns Hopkins All Children’s to monitor some abnormalities and developments in his brain and to make sure that everything is stable. He has seen many specialists and undergone many tests, yet a diagnosis is still elusive. In search of an answer, he is a part of an ongoing study known as the Undiagnosed Disease Network (UDN). The study is out of Harvard and brings together specialists from across the United States.
As they wait for a diagnosis, all Phillip’s family can do is take things day by day.
This fall Philip started in voluntary prekindergarten at a nearby school. There he has a one-on-one aide to help him stay on task and to help with his balance issues. He also works with a speech therapist at school who continues the lessons set by Ferreira. With the progress Phillip has made so far, the hopeful step in his journey is starting kindergarten next year.
“It’s amazing to have the resources especially at a time when you are unsure and unclear what the path ahead of you is. We don’t really have a roadmap,” Brenda adds. “It can be frustrating, but it’s also inspiring because we know there is no real limit to what he can accomplish.”
Though Phillip has a long, uncertain path ahead of him, he is sure to keep moving forward with a smile on his face.