The Sullivan Story: Homebirth and Homeschooling

By Chris Sullivan

Welcome, Little Boy!

My third pregnancy was a surprise.  We weren’t sure there would be a third, but here we were, so we decided to redeem a promise we’d made to ourselves:  This one would be born at home.  My first two deliveries had been in hospitals, straightforward, uncomplicated – except for what seemed to us like tiresome negotiation with hospital staff to avoid medical intervention and let nature take its course. We searched for and found a competent midwife practice, made all the necessary arrangements, and prepared for our baby to be born at home.

As the months passed and a hot summer turned hotter, we waited until, a week after his due date, our little Daniel was born after less than three hours of labor, in our bedroom, in August 2003. He was a healthy, robust eight pound, nine ounce bundle of joy.  We counted fingers and toes – and two odd little pock marks on his neck. The midwives weighed and measured and gave instructions for tests that we could get at our visit to the pediatrician, but neglected to mention one, the one that would prove decisive for Daniel’s future:  the newborn hearing screen. When our other two children were born in Minnesota, there was no such standard hearing test for newborns, so we didn’t know to ask. When we dutifully saw our pediatrician for Daniel’s initial check-up, and for months thereafter, although we told everyone he had been born at home and although they had access to all his medical records, no one ever recommended his hearing be tested.

We did all wonder about those little holes in his neck though.  What were they anyway?  The first pediatrician prescribed a topical antibiotic, even as I protested that they seemed less like sores and more like, well, holes. They weren’t swollen or sore. And they moved in a funny way when he swallowed or cried. The second pediatrician sent us to an ear, nose, and throat specialist. Without ever looking me in the eye, the ENT explained in scientific-ese that I only understood much later that the holes were actually the ends of tubes opening deep into my baby’s neck, probably ending near his tonsils. They would have to be surgically removed and why didn’t I just schedule to have him come back for the surgery in four or five months. I did the math. In four or five months my baby would be about eight or nine months old. Could we wait? Finally, the doctor looked at me.  While he seemed puzzled as to why I might not want my infant in an operating room, he conceded that he’d even done the surgery on a child “as old as four.”

The ear, nose, and throat specialist never asked me whether my son’s hearing had been tested.  Three years later I would learn from an audiologist that those little pits in Daniel’s neck – branchial clefts is their technical name – are frequently associated with hearing loss.

He Can Hear – Can’t He?

It wasn’t until Daniel approached the middle of his second year that we began to suspect that something was wrong.  He was supposed to be starting to talk, but he wasn’t.  And yet… Our firstborn, Elizabeth, was a late talker.  Late. At her twenty-four month pediatric visit, I reported that she could say five words, even though she knew her alphabet, her numbers, and could read her name. By twenty-six months she was adding dozens of new words a day.  By two and a half her speech was completely, fluently age-appropriate. Daniel must be like his sister. So we believed.

We weren’t worried, but we decided, reluctantly, to call in a speech therapist and take him to an audiologist to have his hearing checked, although I thought that that was just a silly waste of time. Of course he could hear! He loved music. He’d stand right next to the stereo and listen with the volume up high… Looking back, it makes me sad to realize how naïve I was. But I never suspected that he wasn’t hearing. He made sounds. He played with toys that made noises. He responded to my voice. He could hear. He can hear, just not very well. In those days, in the days before, I didn’t know that there was such a thing as a “hard of hearing” child.  As savvy and well-educated as I imagine myself to be, I just assumed that the possibilities were hearing or deaf.  And my baby was clearly not deaf.

Our first visit to the sound booth was without context or expectation.  I sat with him, listened to the instructions. I tried to be so careful not to give away when or where I heard the sounds. The bunny would light up, or the bear. It all felt so random to me. Was he really responding to the sounds? I didn’t think he was. Did any 17 month old really look at those boxes when they were supposed to? Surely I could just trust the audiologist. So, I did, and she told me he could hear just fine. I wanted that to be true, had assumed before ever stepping into the booth that it was true, and so I believed her, even though I did not believe that the test had told her so. And after all, as my pediatrician had confidently declared when he made the referral, “Lots of kids have speech delays, but not many have hearing loss.”

Months went by punctuated by sessions with a sweet and well-meaning, but inexperienced speech therapist whose visits were all but useless. She never suggested that Daniel might not be hearing her. Before long it was time for the “transition to preschool” assessments. I home school my older children, and had never sent such a tiny child away for any kind of schooling, so it was with hesitancy and trepidation that I brought my not-quite-three year old in for observation by speech therapists, occupational therapists, and special education pre-school teachers. And thank goodness I did, because this was where the first threads of the mystery were exposed and the tapestry began to unravel.

Unraveling the Mystery

A hearing test was part of the drill.  The first round was a ridiculous pairing of tiny, puzzled Daniel with another well-meaning and unfortunately confused woman with big headphones and little apparent experience with preschoolers. We were referred to the school district office. Round two was a replay of round one with a different confused audiologist and the same big headphones. At long last someone got wise and scheduled us in the sound booth.

It was October of 2006.  Daniel was three years and two months old.  He had been in a tiny, wonderful preschool program with five other speech-delayed children, a speech therapist, occupational therapist, and classroom aide for two months.  The specialists were suspicious. Was I sure he could hear? We were about to find out.

Moments that change your life are rarely marked with neon until after.  Arriving for the first time at the Exceptional Student Services office, we had no idea how important the day would be. Daniel and I were ushered into the sound booth, at long last, by an experienced and highly competent audiologist.  I listened and watched with Daniel in my lap. The tones came and he did not turn. The rabbit did not light up, nor the bear. Long minutes passed. When we emerged from the booth, I had only to look at the audiologist to know what I already knew. My baby wasn’t hearing.

She looked in his ears and found fluid and recommended a trip to the pediatrician and a follow up visit to be sure, absolutely sure. Already the conversation was turning into to blur of sound. What would it mean, I asked, if we came back and the results were the same? Well, she replied, Daniel will need hearing aids. I don’t know what I expected her to say, but that was the last thing I heard that day, because it shocked me.

Next there was the visit to the pediatric office where they spent the better part of thirty minutes trying to re-check Daniel’s tympanogram with an ancient machine that not a single person in the office knew how to use while my hungry, tired son screamed bloody murder. Then, a month later, it was back to the sound booth.  More pure tones, still no bunny, no bear. It was conclusive:  Daniel had, has, a bilateral, moderate/severe, sensorineural hearing loss.

Late Diagnosis – Not a Moment to Lose

One of the best pieces of spiritual advice I’ve ever heard is this:  “You must ruthlessly eliminate hurry from your life.” However, in the midst of a “late” diagnosis of hearing loss, the advice is quite the opposite:  There is no time to lose!  The first weeks were a cloud of activity, questions, tears, websites, and phone calls, endless phone calls, to medical insurers, audiologists (seven!), ENT doctors, speech-language pathologists. 

By the power of prayer and several urgent phone calls, Daniel was in the Kaiser clinic for ABR/ASSR screening the day after his diagnosis in the sound booth.  We completed the testing a week later.  A week after that, we were sitting in a back office at the Children’s Hospital, trying to choose from among the myriad options of ear mold colors.

The most daunting thing in those first, mad days was the host of possibilities and choices for everything, from ear mold colors to communication modalities, from audiologists to therapeutic techniques. Even knowing rationally, as so many kind and well-meaning professionals advised, that I didn’t have to get it all right the first time, I wanted to know it all, figure it out. I felt the urgency and the inevitable guilt of the months that my son had not been hearing, and I wanted him in hearing aids, in speech therapy, at the right clinic, with the right communication modality, all now, now, now.

At long last a well-ordered team began to emerge from the chaos – the “right” hearing aid audiologist at the “right” clinic, the “right” speech-language pathologist with the “right” method – that is, we emerged into a sense of clarity of what is right for us, for Daniel, for our family, for now.

Decisions, Decisions

Being the person I am, what I wanted from all the professionals I met in those early days was information.  For more than two months, all I did was to read about hearing loss, think about hearing loss. I felt like I ought to become an overnight audiologist, teacher of the deaf, and speech language pathologist. I read books. I read articles. I scoured the internet. I asked questions of perfect strangers, face to face and in cyberspace. I ate, slept, and breathed hearing loss.

I didn’t learn it all. I am not a qualified professional anything, except mother to my son.  And that is surely enough. I did learn an awful lot, and I believe that it helped my son immeasurably. When we did make initial choices about communication modalities, therapies, and technologies, I felt the confidence that good information and good help can bring.

What’s Best for Us, Part 1:  Communication

Of course, the first big question was which communication system we should use. I explored every possibility:  oral, ASL, Signed English, Cued Speech, and various combinations of them all. I was told by the audiologists that Daniel ought to be able to hear the whole range of human speech with his hearing aids.  Spoken English was (and is) the only communication system in which I am fluent, so it seemed the obvious that oral communication was the place to start.

Still, I worried.  What if his hearing deteriorates?  Doesn’t he need it all – spoken and signed language – just in case? What about during the first months, while he’s learning to hear and to speak? Would it be faster, clearer to sign to him?  I knew a number of signs from a class I took years and years ago. (Coincidentally, or providentially, depending on your point of view, I had long had an interest in ASL and Deaf culture.) Should I supplement his oral language using Signed English or ASL?

I asked every professional I saw for opinions.  Finally, I decided on what seemed to me the most practical, middle-of-the-road road:  We would concentrate on oral language and supplement with ASL signs in English word order.

What’s Best for Us, Part 2:  Technology

Our technology choices were somewhat easier.  There was no question that he needed hearing aids in both ears.  He was not a candidate for a cochlear implant, since he has considerable residual hearing.  But how does one go about getting hearing aids for a child?

I talked first to our educational audiologist, who explained to me the basics: First, she said, your health insurance won’t pay for any of it. Second, it’s going to cost a lot of money. I will never forget writing down the numbers as she delivered them to me over the phone. Two to three thousand dollars? Each? And then there was FM technology, which she patiently explained and highly recommended for a child like mine who, being late diagnosed, needed all the access to language he could get. The total price tag was upwards of $8,000. Finally, she explained, that I would have to find an audiologist who dispensed hearing aids. She could give me a list of private audiologists, but most were not experienced in working with children. I could go to University Hospital, Children’s Hospital. There were many possibilities. Too many.

I made my first call. I talked to a receptionist who told me an initial visit at their facility would be $600 – to sit down and talk to someone. Then we’d come back, for another fee, and have him fit for ear molds. I didn’t even know what an ear mold was. All I knew was that these initial, essential services were going to cost us close to a thousand dollars. I hung up the phone and started to cry.

Then I remembered that there was no time to waste, so I picked up the phone again. This time I called a private audiologist and even scheduled an appointment. She was kind and explained things. And she was cheaper.

But I was still confused. I had come to understand that it might take months for Daniel to get his own hearing aids. What could we do until then? Somehow I learned that the Children’s Hospital had access to loaner aids. One more call…

This time I hit pay dirt. I talked to Sue Dreith, the head of audiology services. She patiently explained to me what ear molds were, what we’d need to do to get some, what they’d cost, how they’d help us find ways to pay. She was a life preserver in a sea of confusion and near despair. And yes, they could get us loaner aids. And a loaner FM system. Could we come in next week?

A year, three grant applications, and many visits to the Children’s Hospital later, we brought home Daniel’s “beautiful blue hearing aids,” with FM receivers built right in, and our very own FM transmitter.

What’s Best for Us, Part 3:  Therapy

As we were receiving audiology services at Children’s, it made sense for us to look into therapy services there as well. Initially, our educational audiologist had suggested that, because Daniel would be primarily aural/oral in his communication, that we might want to look into AVT or Auditory Verbal Therapy. She explained that the AV therapist normally focuses on a child’s audition, to the extent that she covers her mouth when she speaks, so that the child cannot use visual cues to identify the spoken word. While I  could understand the benefit that such intensive listening might provide, I felt uneasy. I had already decided that, for Daniel, in the initial stages of his learning to listen, I wanted him to have at his disposal every means available to internalize language – from visual stimuli from lip reading to some supplemental sign.

We came to understand that the general therapeutic strategy at Children’s was Total Communication, that is, the use of whatever will help the child gain language. That seemed like a better complement to the strategy I was committed to in our home.

Although Daniel was already past the age of three, we were given a couple of visits by a CO-Hear and a CHIP facilitator.  Thus, we became acquainted with Dinah Beams and Mitzi Berger. Dinah explained to me that Mitzi is also a speech language pathologist at Children’s and suggested that Daniel might do well to work with her. How grateful we are to have received such wonderful advice! Daniel has been working with Mitzi for a year and a half and not only has made tremendous gains through his work in the clinic, but he eagerly awaits his weekly time to “play games with Teacher Mitzi.” I am deeply grateful for all the practical – and emotional – support I have received from Mitzi.  Especially in the beginning, she patiently listened to my questions and concerns about my little boy, and throughout, she has been active in giving me advice and support in continuing to work with Daniel on his language and speech skills at home.

Daniel has come so far in his language development that we are now looking anew at incorporating some AV therapy into the mix. I believe that, having had the chance to look at all of our options, and choose the one that was best for us, has prepared us to look in new directions for the future.

Moving Forward

As Daniel moved into his second year with hearing aids, the transformation in his life, in our lives, was unspeakably profound – and no puns intended.  At a school conference, the first thing his teacher said was how “grown up” Daniel sounded pretending to talk on the phone. I immediately burst into tears, thinking of the little boy who, just a year before, could not form a sentence. We are looking forward to wrapping Daniel into our home school – a reality that seemed a distant dream when he was initially diagnosed. But in these truly short months, we have, miraculously, become a functioning family with a hard of hearing child, and, as other such families will surely understand and concur, we are all the more blessed for it.