An Interview with His Father, Jeff
“Every day, we are just so happy, so pleased and so blessed that Carter has this school – this wonderful, safe, nurturing place where he has just flourished.”
This is how Jeff Pitcock, father to ACCESS students Carter and Kapi Pitcock, begins telling Carter’s story.
Carter is Jeff and Lori Pitcock’s first child, who they had long awaited while completing an adoption process. Seven years ago, the Pitcocks arranged to travel to Austin, Texas, to meet Carter’s birth mother. It was a high-stakes meeting, where she would determine whether she would entrust her son to the Pitcocks’ care.
She was deaf and mute, and through an interpreter, she told Jeff and Lori that it was very important to her that Carter get a good education. They visited some more, and then it was time for the Pitcocks to leave and head back to their hotel. Not even one hour later, they received the call from their adoption agency: Carter would become part of their family once the waiting period had passed. They took him home Sept. 11, replacing what had become a sad day with happy memories.
When Carter was 12 months old, Jeff and Lori noticed that something was “not quite right.”
“He could sleep through a party,” said Jeff, explaining that Carter could walk right next to a stereo speaker and be unfazed by loud changes in music. “It became apparent that he didn’t have an auditory startle response.”
In addition, Carter was not babbling. Upon an auditory exam, he was found to have fluid in his ears and had PE, or pressure equalization, tubes inserted to address the problem. At a subsequent speech-language evaluation, he was diagnosed with childhood apraxia of speech, or CAS. Jeff, who had worked in a clinic that treated adults with apraxia, was unconvinced of the diagnosis and sought second and third opinions, both of which confirmed a diagnosis of CAS.
Carter began receiving speech and developmental therapy. Although the tubes seemed to improve his hearing somewhat, they sometimes fell out and his speech “just wasn’t going anywhere,” Jeff recalled.
Upon Carter’s third birthday, Jeff and Lori enrolled him in ACCESS Preschool and therapy services. Not long after a routine speech evaluation and, after having a few months to work with Carter, his speech-language pathologist, Stephanie Chester, told the Pitcocks that she felt Carter was presenting with speech and hearing behaviors typical of a child diagnosed with hearing impairment rather than CAS.
After a review of his newborn hospital records and other medical records, Stephanie observed that Carter had failed an otoacoustic emissions (inner ear sound) test at birth, had preauricular pits (dents or dimples in the soft tissue near the ears) and had a branchial cyst, a membrane in his neck tissue, surgically removed at 2. She suggested Jeff and Lori explore more testing to see if there was more to learn about Carter’s development and medical health.
After more visits to doctors and specialists, including a geneticist, Carter was diagnosed with branchio-oto-renal syndrome at 4. It is a genetic condition that typically disrupts the development of tissues in the neck and causes malformations of the ears and kidneys.
The diagnosis process involved an auditory brainstem response test that revealed Carter had no hearing in his right ear and profound hearing loss in his left ear. A subsequent CT scan revealed that Carter had no auditory nerve in his right ear and that both of his cochlea are not fully formed, which has resulted in a loss of frequency, including the frequency of language, in his left ear.
“Stephanie Chester will always have a wonderful place in our hearts,” Jeff said, explaining that the diagnostic paved the way for Carter to get a hearing aid for his left ear, which has “changed his world.”
“Fortunately, the care and therapy that he has been getting at ACCESS in the interim has made a profound difference in his life. He would’ve probably missed his window for speech acquisition otherwise,” Jeff said. “If it hadn’t been for ACCESS and for Stephanie investing herself, and for all of his therapists and teachers, I don’t know where he’d be today.”
“When he started ACCESS Preschool at 3, he was nonverbal, did not interact with friends. He was in his own little world. Now he sees me and asks me about my son, and it’s a real conversation,” said Stephanie. “He’s a really smart kid, and that was being disguised by his hearing impairment.”
Carter has now had his hearing aid two years and is performing well in his ACCESS Academy classroom. His articulation goals have drastically changed from the start of his therapy services at ACCESS. He began with the goal of producing sounds of any kind, and he now works to produce a small set of specific sounds, along with language goals of using appropriate syntax, engaging in higher-level class participation, using sequential and prepositional phrases, answering questions in a variety of settings and more.
“He still has a long way to go with his speech, but there’s no better place to be. He’s learning, and his cognitive skills are not being delayed because of his speech delay, and that’s huge. We’re not waiting, and ACCESS doesn’t wait. It’s pushing him to move forward, and he’s doing great. He’s really flourished,” said Jeff.
“When your child gets to be 4 and is just getting to tell you, ‘Daddy, I love you,’ it brings tears to your eyes. To hear his voice now, to hear him communicate his needs, to hear him tell jokes, to just tell me how his day was and how he did in school, it’s just amazing,” said Jeff. “He has the sweetest little voice, and it’s been there the whole time, but he just couldn’t do that before, and now he’s talking and learning – just amazing.”
With Carter’s success, the Pitcocks enrolled his younger sister, Kapi, in ACCESS Preschool as a typically developing student.
“Carter and Kapi are forming a very special relationship. We love having them both here at ACCESS,” said Jeff. “There are so many wonderful aspects to this school outside of the student-centered curriculum.
ACCESS also has something very dear and important to us:
An atmosphere where students learn to accept and be loving of all children, no matter what their disabilities are. Here, students aren’t segregated.”
“Carter enjoys reading, and when we read books together, we read them together, switching off sentences. He enjoys that participation. He does so well with his reading, math and science, and he can finish his homework in short order. Part of that is because of multi-modal learning that is practiced here. An auditory-heavy curriculum wouldn’t have worked out well,” said Jeff.
“Right now, Carter’s so fired up about doing well in his class. Every day, he takes my hand and walks me down to his classroom to let me know where he is on the behavior plan, that he’s making good choices,” said Jeff. “It certainly feels like we’re fulfilling the promise to his birth mother to get him the education she thought he should have.”