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When Coleman was five months old, a neurologist at Vanderbilt University Medical Center in Nashville told us that he thought our son might be deaf, given his unresponsiveness to voices and the fact that he would not “startle” at the sound of loud noises. Having already received diagnoses of neutropenia and Dubowitz Syndrome that week, we weren’t sure how much more bad news we could take.
The neurologist ordered an ABR (auditory brainstem response) in which electrodes are placed on the scalp to measure brain wave activity in response to the introduction of sound. Results: Coleman’s hearing was near perfect! He was just locked in his own little world and would respond (or not) if and when he chose to do so. While many questions about Coleman’s future remained, hearing loss was removed as a variable in the equation, that is, until just a few months ago.
A word of counsel for you fellow husbands and fathers out there: never underestimate the power and the accuracy of a mother’s intuition.
Kim mentioned to me a few months back that she was afraid that Coleman was experiencing a decreasing ability to hear. I had absolutely no idea what she was talking about. How can you tell when a non-verbal child is losing his hearing? Coleman’s behavior and responses seemed exactly the same as far as my perception was concerned. He still chuckled when I whistled, and he laughed all over when I did my “insider routine” of rapidly saying, “One, two, three, four… Johnny Bravo… whut, whut, whut… bumpity, bumpity, bump… uhhh, uhhh, uhhh,” followed by a sustained whistle. (That’s the best description I can offer right now.) He also responded with appropriate signs or actions when I made requests or asked him questions.
Yet, Kim noticed that Coleman was confusing like-sounding words. When she would say “bird,” he would often sign “verb.” You might be wondering why Coleman would have a sign for that particular part of speech. It’s actually his sign for the song “Verb: That’s What’s Happenin'” in the Schoolhouse Rock! animated educational series which he watches over and over and over.
Kim went with her hunch and scheduled an appointment at the Scholl Center in Tulsa. An initial evaluation led to an ABR, the preliminary results of which indicated hearing loss, but of an indeterminate level due to Coleman’s activity during the procedure. The most accurate assessment could only be made if he were under anesthesia and completely still. As providence would have it, Coleman’s sedation dentistry procedure was coming up soon since it had been delayed due to the guardianship issue (see “Guardians“). This allowed time for Meredith (our incredible, favorite audiologist!) to coordinate things with the dentist (Dr. Evan Clothier, another blessing from God) and the surgical center so that she could perform the ABR prior to the dental procedure, thus avoiding additional anesthesia.
The ABR under sedation confirmed an assessment of moderate hearing loss, right in middle of the scale between mild and severe, and a recommendation of hearing aids was made. Kim and I took Coleman soon afterward to have impressions made for the earmold portion of the behind-the-ear (BTE) devices. We were very apprehensive about how well Coleman would handle wearing hearing aids. For many years, he has demonstrated a behavioral habit of pressing his index fingers into his ears, which has nothing to do with the volume of ambient noises. Rather, it seems to be a comfort measure in which the pressure is soothing to him.
The big test came on Tuesday, December 18, when Kim, Hannah, and I accompanied Coleman to pick up the hearing aids and receive instruction on their use. Meredith gave us a tutorial on the devices and explained that the volume had been preset and locked based on Coleman’s ABR results. Then, she and I simultaneously placed the hearing aids in and behind Coleman’s ears, turned them on, and waited on the 10-second delay for them to power up.
The look on Coleman’s face changed immediately when the hearing aids came on. His expression was one of contemplation and discovery. After a minute or so, Meredith prompted Kim to ask Coleman who loved him. This is a question that never fails to draw a response of the only sequential syllabic sounds that Coleman has ever been able to make, “Ma-ma.” “Coleman, who loves you,” Kim asked. For the first time in his life, Coleman whispered. It was almost like a faint breath with his lips moving. “Ma-ma.” He instantly processed the fact that he was hearing things much more distinctly than he had been, and he was wading in ever so tentatively, not knowing exactly how his voice would sound. Laughter and tears were shared around the room.
With only three school days left before the Christmas break, we decided not to send Coleman back to school with the hearing aids; better to let him adjust to them at home over the holidays, rather than risk him ditching them in a trash can, toilet, or some other place that he has been known to deposit his non-favorite things. I will hold off for now on sharing the initial instances when Coleman stealthily and fluidly popped the hearing aids out as soon as our backs were turned, one time squirreling them away under our bed. It took us 20 minutes to discover that particular hiding place.
However, since those first few trials and errors, Coleman has adjusted wonderfully to the hearing aids, far beyond our most optimistic expectations. We’re still not out of the woods yet, but the battle that we feared has not materialized. He seems to have embraced the ability to hear with greater clarity. The snugness of the earmolds is apparently satisfying his sensory need for pressure, and he is consistently keeping his fingers away from his ears, reversing a behavior that I had just assumed would always be a part of his “Coleman-ness.”
Yet again, Coleman’s resilience and perseverance have amazed and inspired us. God keeps blessing him in new and profound ways, and Coleman, in turn, keeps blessing us.
On February 19, 1993, Kim and I were blessed with the arrival of our second child, a son, Coleman Bradford Pyles. Hannah, who was 2 1/2 years-old at the time, was thrilled to welcome a baby brother into our family. Hannah had already been such an incredible blessing in our lives and had brought us so much joy; having a “matched set” was almost too good to be true. We imagined a future with a house filled with the noise, activity, and laughter of the four or five children we hoped to have.
Coleman’s diagnosis with Dubowitz Syndrome at the age of five months and an additional diagnosis of autism a few years later significantly changed our hopes and expectations for the future. I think that Kim and I both began making the necessary mental adjustments immediately, although I would unfortunately be about a decade and a half behind her in emotionally processing what this meant for him and for our family. Hannah was a sharp little girl, and it didn’t take her long to realize that her little brother was different from most; she quickly took on roles far beyond her years as a tender guardian and fearless defender of Baby Coleman.
I’ll spare you the details of the struggles, heartaches, advances, and setbacks of the early years: more hospitalizations and pneumonias than I can count, trips to NIH, bone marrow aspirations, years of Neupogen injections, Cerebral Palsy Center, Easter Seals Center, orthotics, physical therapy, occupational therapy, speech therapy, and special education.
We have weathered many storms over the years, but, even through the worst of it, there was always plenty for which we could be grateful. We were a family; as odd and irregular as we were, we were still a family. While others cannot fully understand our circumstances unless they have walked this particular, peculiar road, we have always been blessed with friends and a church family who were sensitive to Coleman’s needs, as well as to those of our family.
I have watched in amazement for 19 years as Coleman has softened and stolen hearts, broken down barriers, loosened people up (who seriously needed loosening up!), and became a perennial teacher’s pet. He has trained and entrapped countless people into doing his bidding, whether it was whistling or producing other sound effects for him, quoting movie lines, or supplying him with hamburgers, Dr. Pepper, Skittles, and Lucky Charms.
Coleman has accomplished all of this without saying a word; “Mama” remains the only word he has ever spoken. If my “accomplishments per word” ratio were as great as Coleman’s, I would be the recipient of several Nobel and Pulitzer Prizes by now. I’ve talked a lot!
Coleman is the happiest person I know. His laughter is infectious. His cleverness and ingenuity are amazing. His perseverance is inspiring. He is sweet. He is gentle. He is affectionate. He has overcome the fear of simple things (but extremely terrifying things to him) like hair dryers, vacuum cleaners, electric clippers, escalators, and horses, although he remains very uncomfortable around dogs and cats. I’m with him on the cats!
He has been blessed with the best mother and the best big sister God could have ever given him.
Happy birthday, Coleman! Your Dad is so proud of you!
Thinking Out Loud 