Alanna M Learning to Express Herself – Alanna’s Journey With Apraxia

“The entire diagnosis process at Children’s Specialized Hospital was so quick – it was a miracle to have answers,”

Alanna was a very happy baby, but she struggled to communicate with those around her. She was described as shy yet cheerful. Alanna had no pronunciation or movement of the mouth. She paid close attention when her parents spoke and recognized her name but had difficulty copying certain sounds. When trying to imitate them, she could only mumble. As she approached two years old, Alanna still wasn’t speaking, and her mom, Kirsy, knew that immediate intervention was needed.

Discovering A Diagnosis
To try help her daughter better communicate, Kirsy brought Alanna to Jersey City Medical Center for pediatric occupational therapy services. The hospital’s pediatric services then merged with the RWJBarnabas Health system and Kirsy was introduced to Children’s Specialized Hospital where she saw a Developmental Behavioral Pediatrics and Neurology.

“The entire diagnosis process at Children’s Specialized Hospital was so quick – it was a miracle to have answers,” Kirsy states. Alanna got a prescription for speech and language therapy in just two weeks and she began outpatient speech and language therapy.

Alanna’s providers at Children’s Specialized Hospital suggested a sleeping test, MRI, genetic testing, and a neurological evaluation to rule out diagnoses. This allowed Alanna’s care team, including her Developmental-Behavioral Pediatrician, Dr. Lavinia Stoicescu, and Pediatric Neurologist and Director of Outpatient Medical Quality Improvement, Dr. Andrea Richards, to determine the diagnosis of Childhood Apraxia of Speech, a rare speech disorder that causes children to have trouble controlling their lips, jaws, and tongues when speaking.

Alanna began receiving speech and language therapy services twice per week with Speech Language Pathologist, Kayla Roman. Speech therapy started slowly. Initially, Alanna experienced difficulty concentrating during treatment. At that time, she didn't have any words. Her most challenging goal was to pay attention and copy mouth movements. This was hard as a parent for Kirsy to understand because she didn’t know what was happening or what would come next.

In speech therapy, Alanna practices CV words (consonant-vowel, like “cow”), and CVC words (consonant-vowel-consonant, like “cup”) as well as closed syllables, (when a syllable ends with a consonant), which includes lots of repetition to help her correctly pronounce words.

“Alanna has demonstrated improvements not only in her speech but also in her self-confidence and ability to express herself. She is producing more words as a result of direct intervention for her CAS (or Childhood Apraxia of Speech) and is better able to communicate her wants and needs with reduced frustrations by using a high-tech AAC (Augmentative and Alternative Communication) device! Using this combination approach to help decrease her frustration, she has completely improved her confidence and progress in speech therapy,” remarks Alanna’s Speech Language Pathologist Kayla Roman.

Kirsy has confidence in Alanna because she knows she will achieve every goal in her own time. “I’m no longer frustrated or sad about Alanna’s diagnosis because we’re in the right place and heading in the right direction,” Kirsy says.

“Alanna has always amazed me with her bright personality and willingness to overcome difficulties. Although she has great barriers in communicating with others, through therapies, and her family's continuous support, she was able to demonstrate great progress over time,” remarks Dr. Stoicescu.

Creating a Customized Therapy Plan
In addition to speech and language therapy, Alanna also began receiving pediatric occupational and physical therapy at Children’s Specialized Hospital West Orange with Senior Occupational Therapist, Jaimie Smith, and Physical Therapist, Ariel Camaligan.

“Alanna loves going to therapy. When we walk into the building, Alanna opens the door and gestures signing a paper with a crayon, indicating she’s ready and excited for her therapist to pick her up,” Kirsy notes.

At the onset of occupational therapy, Alanna faced a lot of sensory issues but was able to adjust to some of them over time. She also practices tracing as well as cutting to improve bilateral coordination, fine motor skills, and sensory processing.

“I was lucky enough to be part of Alanna’s team here at CSH! She was initially shy during her occupational therapy sessions but she quickly let us see her happy, silly personality. During her time at CSH, she made big strides and had an impact on the morale of everyone lucky enough to work with her. It was a pleasure to work with Alanna and her supportive family,” reflects Jaimie Smith, Alanna’s occupational therapist.

Ariel found that the gross motor movements they practiced during Alanna’s physical therapy sessions often encouraged her to speak and communicate. Some examples include sitting on a scooter and propelling herself forward or backward to play with fruit toys, which encouraged her to count how many fruits she had already collected.

Additionally, whenever she would go down the slide, Ariel would count down, “Ready… set…,” and Alanna would respond with, “Go!”

Ariel remarks, “Alanna was definitely one of the office darlings! Everyone was always excited to see her come in whether for occupational, physical, or speech therapy. When I first started treating her, she was very shy and often needed some convincing to boost her confidence with tasks. Over time, she became much more confident with her skills and her personality really started to shine through as she became confident enough to even show off her skills to others. She is a super sweet and bright girl. It was such an amazing pleasure to be able to treat her in physical therapy!”

At home, Alanna was able to communicate with her family through basic sign language and gestures. Kirsy also took what was taught in the sessions and continued to practice at home with Alanna since her therapist emphasized the importance of involving the family in therapy.

“Mom is always there to support Alanna and ask for carryover strategies to continue to work at home, which has been crucial. I am so excited to see Alanna’s communication and confidence continue to grow,” says Kayla.

Joining Family Faculty at Children’s Specialized Hospital
In November of 2023, Kirsy received an email about a job opening in the Children’s Specialized Hospital’s Family Faculty department. Family Faculty are parents and family members whose children have or are still receiving services at Children’s Specialized Hospital. The team's own day-to-day experiences provide a unique perspective, understanding, and empathy for families going through similar situations.

Kirsy would often find herself speaking with fellow parents in the waiting room, making conversation and trying to calm them down. She decided this would be the perfect role for her, so she applied and was offered the position.

“Every time I go to Alanna’s appointments, I go as a mom – I never say I am Family Faculty, and they always treat me like family,” Kirsy reflects.

Kirsy wanted to help parents beyond Children’s Specialized Hospital. As she learned more about Childhood Apraxia of Speech through her research, she discovered a Proclamation declaring May 14th Childhood Apraxia of Speech Day, with a list of participating counties and cities. When she discovered her city was not included, she set out to achieve this official Proclamation on behalf of the City of Bayonne, NJ, in Hudson County to raise public awareness. On March 28, 2024, the City of Bayonne New Jersey officially declared May 14, Childhood Apraxia of Speech Day thanks to Kirsy and her family’s efforts.

Kirsy’s Hope for Alanna’s Speech
“Alanna is special. She is focused on being a kid, how to play, how to dance. She is a very happy, joyful child. She likes to dance and is so sweet. She loves to greet her brother at the door after school. She is always smiling.”

Kirsy’s goals for Alanna are to pronounce the words correctly, and for Alanna to be able to combine three to four words. She has made so much progress already with the support of her therapists. Now Alanna can jump, run, and skip, and she is more focused. Her sensory issues are better, and she is more aware of her feelings and surroundings. For example, she loves to play in the sand station in her classroom now, whereas she didn’t like to touch or feel the sand before.

“Alanna is now able to communicate wants/needs via total communication modalities. She is a great example of how starting early, with intensive therapies, can help a child with significant developmental delays, ultimately reach their full potential, and feel no different than their typically developing peers,” Dr. Lavinia reports.

Alanna is also a player in Buddy Baseball for the Bayonne Recreation Department, a program for developmentally and physically challenged youth and adults. This program is designed to help individuals of all abilities enjoy the full benefits of baseball participation in an athletic environment structured to their abilities. Alanna is proud of herself when she runs in the field and thoroughly enjoys the program.

“My biggest hope is to hear Alanna speak clearly. Sometimes I hear words,” Kirsy says. While shopping in the grocery store, she was able to say ‘apple.’ “Every child with apraxia has a voice. They have a desire to learn and achieve their goals.” Now Alanna is more confident with one-syllable words and can say “I want,” “give me more,” “I got it,” “mine,” “help,” and “some more.”

Alanna continues to improve, and can now make sounds with fewer errors than before.

“It has been a pleasure to work with Alanna and her family. She is a ray of sunshine every time I see her, and I am confident that she will soar to new heights with her amazing family support and the excellent therapies that she is receiving,” says Dr. Richards.

Learn more about Pediatric Speech and Language Therapy at Children’s Specialized Hospital.