For the first time in his life, Dean is able to speak!
Building a foundation for communicating with confidence
Dean was born with a rare genetic disorder known as 22q microdeletion syndrome and struggled with many medical issues for the first three years of his life, some of which were life-threatening. He started speech therapy at 20 months old and saw four speech therapists over the course of 2 1/2 years with no progress. Through my own research, I suspected that my son had velo-pharyngeal insufficiency (VPI), a condition common in children with 22q. I shared this information with Dean’s therapists at the time and was told he did not have VPI, he may never speak, and his communication device would be his sole form of expressing himself. It was so disheartening and depressing because in my heart I knew this wasn’t right, so I began looking for information.
Desperate and seemingly out of options in Oklahoma, we made an appointment with the Children’s Hospital in Philadelphia because they have a specialty clinic solely for children with 22q. Fortunately, shortly before that appointment we found Dr. Glade’s VPI clinic in Oklahoma City. Dr. Glade suspected it was VPI but we had to wait until he could make a “P” sound before he could be formally diagnosed. Over the next 6 months, we painstakingly worked to make just that one sound. We then went to OU Children’s Hospital so Dean could make the “P” sound under an x-ray. As soon as Dr. Glade saw the results, it was determined that he did indeed have VPI. Surgery was scheduled for June 2018.
Before that surgery, Dean physically could not make any sounds except “P,” “M” and “N.” After he recovered from surgery, we started speech therapy with Shelly in August of 2018. At that point, Dean had virtually no speech. He communicated through sign language and humming, marking his words with intonation. We live in Tulsa, but committed to do therapy with Shelly twice weekly. We drove to Oklahoma City once a week and did teletherapy once a week with Shelly. This therapy was our last hope for Dean to ever develop speech. Over the next year—and for the first time in his 4 years of life—Dean started making progress developing speech. At first, it was a new letter or maybe a word here and there. Then it snowballed and he started combining words and now 17 months after his VPI surgery and therapy with Shelly, Dean is speaking in full sentences. He is singing, asking questions, joining conversations, making friends, and so much more. For the first time in his life, Dean is able to speak! Not only that, but we were always worried that if/when he did speak, he’d be so insecure from years of not speaking that he wouldn’t want to say anything, but Shelly engaged with Dean in a way that not only taught him to make sounds, but how to do it with confidence—and now he hardly ever stops talking! It’s been an absolute miracle and I will be forever thankful for Shelly and Dr. Glade!