Leaving The Nest

I was in such a daze as we left the hospital that I barely registered the woman walking a leashed hog right past us on 1st Avenue. “Is that a pig??” my mom asked with disgust, her expression frowned for other reasons that day. I remember my eyes skimming over the animal, noting the hair on its body. “I think it’s a hog,” I answered quietly, mechanically, pushing the stroller up the avenue with my almost three year old son in tow. We continued our walk quietly, unwilling to break our silence until we felt the privacy of the quiet of my car give us permission to speak. “Jackie,” she started, and I started to sob. “He’s healthy, he’s fine,” she said. “Who’s gonna marry him?” I squealed in a child-like voice through my gigantic tears. “You know who’s going to marry him. Someone who will love him for the amazing person he is, someone who isn’t so shallow so as to consider this a problem.”

I felt so stupid having blurted out a concern I really didn’t even have. I knew those answers. I was as much concerned with my two year old eventually finding someone to marry as I was with a leashed pet hog being walked down the streets of Manhattan. And yet, that’s the only thing that came out of my mouth during the drive home. I sobbed until I had to pull out of the lot, and then I buried it all under a blanket of numbness.
That blanket got rustled the following day, when I was mindlessly looking through a ladies clothing rack at Target, a failed attempt to take a mental break. My phone buzzed, and I looked at the screen. It was the audiologist. I remembered the words she’d said to me the day before, after seeing my face pulled tight against waves of tears that were relentlessly lapping against the tough maternal dam I’d built over the years: “Go home. Cry. I know you need to. I’ll call you tomorrow.”

Amidst the clothes racks, I rediscussed with her the diagnosis: bilateral moderate sensorineural hearing loss. Cause unknown at this point. We reviewed the next steps she’d given me the day prior: call Strivright, an auditory/oral school in Brooklyn for children with hearing loss or auditory processing issues. Speak to the audiologist there about fitting for hearing aids. Speak to the administrators there about applying to have my son enrolled in the state’s Early Intervention program, which would hopefully cover his first set of hearing aids with an FM transmitter, his speech therapy, and center-based education at Strivright. Go back to the ENT to discuss the possible etiology of the hearing loss. “He’s a smart kid. He’s going to be just fine. You’re just going to do what you have to for him. Get him what he needs, as soon as you can.”
And so the race began; I was the exhausted and over-adrenalined driver on a seemingly never ending and circular track. Even now, two years later, those few months throw nightmarish bits of memories at me, unpredictably and at random:
“You’re your child’s greatest advocate,” from the professional advocate for children’s services at a local organization. I nodded my head emphatically, wholeheartedly agreeing but not knowing how to actualize that, and grabbed a tissue to blot my tears.
“We need to do it again, but this is the last time, because it’ll be too much radiation to do it a third time,” from the disgruntled CT tech as I held my son’s head even more firmly through his hysterics, Elmo playing on my phone in the background, my tears reserved for later that night.
“We messed up, and so we’re going to give your son whatever he needs,” from the Board of Ed rep, in reference to the failure on the part of the CPSE evaluators to recognize a possible hearing deficit. I looked down, nodded and whispered a “thank you” through my swallowed tears.
“This is going to be your home now. We will support you and help you and your son through whatever he needs,” from the director of Strivright, as I cried into her shoulder.

“Mommy!! Teet-teet!” My son, hearing a bird chirp for the first time right after we walked out of Strivright with his new hearing aids on. Again, more tears.

Tears of frustration, tears of maternal pain, tears of exhaustion, tears of fear of the unknown, tears of regret. Most of all, tears of regret. Everything dawned on me in retrospect, and I regretted having missed the signs for so long: The way I had to gesture to show him what I meant. How he made sure to look at my face so he could read my lips. The reason he couldn’t be disciplined and was always so frustrated. Why he always yelled so loudly when the room became noisy. That he always made me shut the music or stop singing.

What does it mean to have a moderate sensorineural hearing loss? Sure, things are heard less loudly than normal, with softer sounds (including, many times, the beginnings and ends of words) not being heard at all. A few weeks after his diagnosis, I finally went online to listen to a simulator of moderate hearing loss. I wept for nights after that. I hadn’t realized the inherent distortions of sound. Or the dissonance that becomes of half-heard melodies. Or the overwhelming, and even painful nature of a noisy restaurant.

My son tested normal for hearing on his newborn screen, which, of course, has a false negative rate built in; it’s just a screening test. We’re not sure when he had his hearing loss, or why. The ENT said that 80% of hearing loss cases go unexplained, and that it was more important for us to rule out severe syndromes associated with hearing loss (which we did) and then to move on to addressing the loss and our son’s hearing and educational needs.

With every first conversation, we were told by every professional involved (his audiologists, his service agency, his teachers, his program director) that every word we spoke should be louder and articulated really well until he had his hearing aids, which took a couple of weeks to be approved, and another couple of weeks to come. After that, the articulation of every word still needed to be clear. And from the time of his diagnosis, everything, every single little thing, was an opportunity for conversation that we should never pass up.

I became a speech therapist overnight. An educator. An advocate. A near expert on hearing aids. A pillar of support and strength. But I was still just me. Full of questions, regret, guilt, pain. Not because I didn’t know who would marry him. But because no mother wants her child to have to face difficult challenges. I knew my son had the strength of character to take this challenge and shove it in his back pocket as he confidently strode on to understand and conquer his world. I knew that I’d give him all the tools available to help him face whatever struggles may lay ahead: the proper equipment, the proper therapy and educational setting, and huge doses of love and self-esteem. I was never ashamed of his hearing loss or his hearing aids. I was only ashamed of myself for not having seen the signs earlier.

My son is brilliant. He flew under the radar for a while, using compensatory mechanisms to get by. He always had the requisite number of words in his vocabulary, and pairings of words as he built sentences. The pediatrician and four separate evaluators had no idea he was hearing impaired. Not one member of his large, closely-knit family had a clue. Including his parents. I paid $300 for a second opinion to a top pediatric hearing specialist only to be told that my boy is as sharp as a whip. And because he is so amazing, and because we were folded into the proper support system, he flourished. At the beginning of his time at Strivright, I had to use the daily (yes, daily) newsletters from his teachers to prompt yes/no answers to questions about his day. Then he was able to expand upon his answers and give me some details. I’ll never forget the day that he stepped off the afternoon bus, and I routinely asked, “How was your day at school?,” and he answered with a story about something that had happened. That time, my tears were tears of pride and relief. The one story eventually grew to two or three stories. And now, 2 years later, my son basically never shuts his mouth. He’s narrating and asking and answering and conversing all the time. He communicates effectively and rarely with frustration. He tells me step by step what he does in school each day. My tears have largely been replaced by broad, warm smiles and tight hugs accompanied by squeals of pride.

Strivright indeed became our family. He not only attends school there, but his therapies are through the organization. His audiologist is right downstairs in the lower level of the building, so any problems with his equipment are addressed immediately. His teachers check his hearing aids for proper functioning several times per day. The classrooms are equipped with amplifiers and FM transmitter units. The education is built around language skills and communication building. The school has a true open-door policy and the parents become partners in the child’s learning and language development. The matrons on the bus check for the children’s amplification devices as they get on the bus and as they get off the bus. Everyone is genuinely supportive, loving, and dedicated to helping grow these children.

And now, over the past several weeks, the tears are coming back, unpredictable, and with a vengeance. Tomorrow my son officially graduates. Despite my tremendous pride, I’m biting my cuticles and find myself randomly sobbing in the car. This coming fall, after a six-week summer program at Strivright, he will mainstream into a regular kindergarten at a local private elementary school that is embracing and supportive and ready to fully address his needs, but is as inexperienced with hearing loss as I was two years ago. With this transition we’re going to face some new challenges, and some new iterations of the old ones. I instinctively know he’ll be fine. He’s basically been ready to fly since he pushed his way out of me. He’s had confidence and a sense of readiness literally since birth. And he has his greatest advocate at his side: overwhelmed, self-doubting, anxious and not quite ready or willing to step out of the nest.