Sunday we had a grand party for Ben, a celebration of his graduation from high school.  My father, and all three of my brothers and family, attended.  W, Ben’s mom, had her mother and her three sisters in town for the affair.  Various players from Ben’s academic life — transliterator, DHOH and regular teachers, auditory specialist, tutor — showed up, much to our delight. Ben’s friends and their families were on hand.  Personal friends of mine joined us to share food and drink, reveling in the moment.

That point came in the celebration, as it does in many of life’s moments, when an acknowledgement of the event and its importance to those attending must occur.  Time for a quieting of the crowd, and for someone to say something.  Foolishly, I was unprepared.

Nonetheless, as host with Ben’s mother, we three stood apart and gathered every one’s attention.  Cueing and asking others to cue to some of the deaf guests, I welcomed and thanked all attendees, singling out special people, including the families on both sides, the great education professionals/supporters, and other dear friends.  It was heartfelt, but feel it was not too articulate.  I should have focused on the incredible journey Ben’s made, and the amazing distance he’s traveled in that journey.

The journey from the early traumatic days of his sudden hearing loss at three and half years old, hearing aids and the controversies and choices in deafness.  Quickly identifying the fundamental appeal of Cued Speech — literacy — and deciding that value was dominant.  Learning to cue, attending pre-school events, sending Ben at the age of four on a 45 minute ride to his school!  Eventually deciding on the cochlear implant, committing to the rehabilitation and testing to make it so effective.  Meeting Dr. Cornett, and spending time with the man who invented the literacy system of cueing.  The support and amazing skills of the Montgomery County DHOH professionals, from speech and classroom teachers to transliterators to parent support.  The journey from separate DHOH classroom for pre-school, to mainstreamed with support at the school with cueing, then totally mainstreamed (with transliterators and support) at our local elementary, middle, and high school.

None of this journey did I mention.  I should have been ready for the moment, but somehow in the swirl of the details of the party, it got away from me.  Foolishly, I was unprepared.

Today, running through the woods, rewinding the grand event, I was listening to music.  A song by the Dixie Chicks, Lullaby, struck me.  While it would not have captured the details of Ben’s amazing journey, the lyrics from that song, about a parent’s love of a newborn child, would have captured the essence of what I’d wished I’d said:

They didn’t have you where I come from
Never knew the best was yet to come
Life began when I saw your face
And I hear your laugh like a serenade

How long do you want to be loved?
Is forever enough, is forever enough?
How long do you want to be loved?
Is forever enough?
Cause I’m never, never giving you up

In some sense, life began when I saw Ben’s face.  And a unique life began when Ben lost his hearing.

I’m never, never giving him up.  Nor giving up on him.

How long will Ben be loved?

Is forever enough?  Is forever enough?

I bestowed this valedictory benediction on Maddie, my daughter, for years.  Gender specific, relationship specific, and then universal — girl, sister, child.

Maddie turned 15 yesterday, and time for me to sing her praises, not exclusively but especially as a sibling of a deaf brother.

At her birth, Ben had not yet lost his hearing to EVA, but would during 1995, within Maddie’s first year on earth.  But by the time Maddie was cognizant, she was bound to deafness — as part of our family, as part of her life experience, as part of her relationship with Ben, her older sibling.

I cannot recall each instance, it is so woven into our family, but many a time we must have told Maddie to tap or touch Ben, to get his attention, so we could cue to him.  We must have told Maddie to speak directly to Ben, face to face, so he could see her lips and expression.  We must have told Maddie to wait to talk, as Ben did not have his hearing aids or (later) his cochlear processor on.  We must have spoken and explained and elaborated upon an idea or theme to Ben — “red light,” which means we have to stop; “green light,” now we can go — with Maddie as captive audience, getting the repetition and explanation.  We turned on the captions of the TV, and have watched all videos and television for years with captions on, Maddie watching along with us. We attended open captioned movies, Maddie with Ben and me.

After the divorce, when we three traveled together, Maddie’s role was the more responsible back-up, based on her hearing.  Whether in New York, San Francisco, Toronto, Buenos Aires, or London, she was my assistant, aiding me in relaying information via cueing to Ben.

In the meantime, she got into and succeeded wonderfully in the Spanish immersion program, and is effectively fluent in Spanish (and of course American English).  She learned Cued Speech completely and fluently when she was six, joining the family at the Cue Camp Friendship many times, a teacher aide the last few camps.  She has learned to finger spell and knows some signs, and has joined Ben in the Deaf Access theatre troupe based in Bethesda, Maryland.  She reads broadly and above level.  She is dramatic and occasionally too sassy. She is an excellent athlete, making the junior varsity field hockey and basketball teams as a high school freshman.  She is poised and sensitive.  She is an all-American girl. She is Nancy Drew come to life!

Her relationship with Ben is sweet.  They have sibling friction, of course, but have a special love and kindness to each other.  They are physically and emotionally affectionate with each other.  They gang up on me, mocking and laughing at my ways, my goofiness.  On our travels, they have joined together as a unit, allowing me (and them!) some individual travel experience.  Because Maddie can cue, and can hear, I feel safe leaving Ben in Maddie’s care, while Maddie is in Ben’s care for purposes of protection and physical safety.

For me, luck permitted me to have a baby girl, to parent both genders in our two-gender species.  And with Maddie, fate permitted me the wondrous experience of parenting a deaf and a hearing child.  I have a unique angle on similarities and differences of boys and girls, of deaf and hearing children, of Ben and Maddie.  She provides contrast with Ben, making both better.  The contrast, boy and girl, deaf and hearing, inspires me to be a better parent, a better man.

With the divorce, Maddie has taken on the role of hostess, providing some of the warmth and graciousness that women bring to social gatherings.  As I have learned to cook and we have expanded our socializing, all three of us have improved our skills as hosts; Maddie has blossomed  as sous chef, Ben as front-of-the-house host and drinks man.  In all our adventures, she sparkles.  The theme of dads and their daughters, always prevalent in literature and life, applies equally to us.  The essence of the feminine in a baby girl, its charms and beauty, is transcendent.  And there is nothing like having some female think you are a hero; very good for us dads and our egos!

Deafness is a part of our lives; deafness is part of Maddie’s life, even though she hears.  Ben, her older sibling, is deaf. Ben uses Cued Speech, Ben has a cochlear implant.  Maddie knows how to cue; Maddie knows about batteries and infrastructure of a cochlear implant.  Maddie is hearing, but she hangs with the deaf, at the theatre or in our social events. She signs some, cues proficiently, speaks and reads well, speaks and understands a foreign language, is a scholar and athlete.

My valediction, spoken so many nights as I tucked her in, has come to pass.  Through love, effort, innate talent, luck, and lots of outside assistance, Maddie fulfilled the benediction. She is a great girl, a fantastic sister, and an elegant and delightful child.  Happy birthday to my favorite girl in all the world.  Happy birthday, Maddie!

Maddie Osborne

Dates in November are significant in my professional and personal life.

I just completed 20 years at my job, receiving a plaque from our government thanking me for “loyal and devoted service.”  My first day 20 years ago, a Monday, was the week of Thanksgiving; I was thankful to the government for employing me and providing a paid holiday the first week of work!

The day the government shut down in 1995, November 14, was the day Ben was formally diagnosed with severe to profound hearing loss in both ears.  I remember taking sick leave rather than going to work (where we were required to report only to be summarily  dismissed, as lack of funding had shut down all non-emergency services).

Instead of work that Monday, Wendy, Ben and I headed to Georgetown University Hospital for a scheduled auditory brain stem response (ABR) test, designed to tell us more about Ben’s apparent hearing loss.  We had been to the hospital the previous Friday, where hearing tests were attempted with Ben to provide an assessment.  No formal assessment was made, and the staff cleared the schedule so that we could have the ABR test on Monday, which required a mild sedative for Ben.  Curiously, we accepted the lack of assessment regarding whether Ben was deaf, although that was the reason we were at the hospital.  We accepted the inconclusiveness of it all — come back Monday when we can have a pure scientific evaluation, looking at the brain’s response to auditory stimuli rather than trying to get Ben to drop a block if he hears a sound.  I accepted because I was in denial.

The weird November weekend — emotionally vacillating from denial and hope to acknowledgement and no hope — passed, and we reported for the ABR test that shutdown Monday.  This time, post testing, there was no stalling by the staff as the results were clear:  your son is deaf!

Our beautiful boy, just three and half years old, was deaf!  Our boy, who two months earlier was clearly hearing (in a videotape he is responding to questions while not looking at the questioner), had moderate to severe sensorineural hearing loss bilaterally.

The rest of that government shutdown week, many hours were spent crying.  I grieved  over how I assumed Ben’s life was to have been, which it was not going to be.

Ten days later, on the Wednesday before Thanksgiving, Ben had a CAT scan at Children’s Hospital, which yielded an official diagnosis — enlarged vestibular aqueducts, formed in vitro, predisposing him to deafness within the first five years of life —  for all the good it did to attach a cause to the reality.

The world changed on that shutdown Monday, a portal to a new world opened up.

• Ben’s life was what it will be, not what it was going to be.

• The unarticulated but inherent assumptions about his future were not to be.  Vague dreams dissipated.

• Everything about his future was ours for articulation.   Dreams reconfigured.

• Communication was our necessity.

• Cueing was our (eventual) modality.

I followed Ben through that portal to a new world, a world which has profoundly shaped me.  I give my thanks daily for the joy of the physical Ben, and for who he is, the metaphysical Ben.  Deafness is just a part of his wonderful and special self.  I give thanks for the world of deafness.

The courage to be who I wanted to become.  It comes back to Ben, and his deafness.

Give thanks this special Thursday, and every day, for the beauty in the world around us and the love in our hearts.  May you too find the courage to be who you want to become.

About a half dozen years ago, I heard a lecture by Dr. Carol LaSasso, presenting on her paper co-authored with Dr. Melanie Metzger (see the NCSA web site for links to the paper), about the benefits of using Cued Speech to teach deaf children how to read. Both Ben’s mom and I had been drawn to cueing in a great way because of its focus on literacy. Dr. LaSasso laid out her research and its conclusion that Cued Speech was the best system to teach deaf children to read. She then observed the phrase I have since stolen and used without attribution for years: in order to learn independently, one has to be able to read.

Cued Speech is the best system to teach a deaf child to read, and thus cueing leads to ability of our deaf children to learn independently. No reliance on technology, interpreters, or intermediaries. Cueing, with its ability to show the phonemes of spoken language, and thus permit the de-coding of the written version of the spoken language, teaches deaf children to read. And with reading, our deaf children are always independent in learning. Access to the written word; literacy in action!

Proudly cue “Happy Independence Day!” For cuers, for our deaf children, this phrase is more than just a salutation for one day.

Two weeks ago, on May 2, Ben turned seventeen. Born just past noon on a bright Spring Saturday, he emerged a beautiful infant, and grew into an adorable toddler with blue eyes, curly golden hair, and a sweet disposition.

Although not yet manifested at birth and in these early years, Ben was born with enlarged vestibular aqueducts in his inner ears (see http://www.nidcd.nih.gov/health/hearing/eva.asp for specific information on this form of hearing loss). In layperson’s language, Ben was born with structural defects in his inner ears, formed in utero, which predisposed him to deafness. That predisposition emerged when he was about three and one-half years old.

At birth, I fell in love with my boy; it was love at first sight. As he grew from infancy to toddler-hood, my heart bubbled with joy, pride, and love. Another child, my precious girl Maddie, came into my life. I fell in love again. Later that year, Ben’s deafness became evident, and a diagnosis was given, for all the good it did to attach a label to the cause.

Ben’s birth set in motion a chain of events leading everywhere, in all kinds of directions, including deafness, Cued Speech, and a cochlear implant. A portal to a different world opened. A new format emerged. A new identity enveloped me at Ben’s birth, setting in motion a chain of events as a parent, a dad to a son (and later a daughter), a father to a deaf child (and later a hearing one), a cueing man.

Like the time-travel movies referenced in the title, our present is the past, and will be the future. Ben’s recent birthday was a celebration of the beginning of his journey on earth. Seventeen years later, our journey together is inextricably linked to deafness and cueing.

Ben is a deaf cuer; I am cueing dad. Our history is based on this reality; our future will make this reality our history. In the present, that’s something to celebrate!

Yesterday I spoke with my 88-year old father in Florida, catching up with his weekend. The usual routines for him, attending church, breakfasting with friends, visiting my mother in the nursing home (stricken with Alzheimer’s). As American males, we naturally did a post mortem on the big game, the Super Bowl. We concurred that it turned out to be an entertaining and exciting game.

How had I spent the game, he asked?

Well … although the youngsters were not with me this week, I had invited Ben over to watch, as he would be relegated to the backup TV at his mother’s house.

Watching the game, I noticed the captions were behind, especially on some of the controversial moments. Ben asked me questions that the announcers were discussing or had just touched upon (was his knee down? was his arm moving forward, or was it a fumble?), but the captions lagged. I’d cue to him that the announcers were discussing it, and we’d wait the moment as the captions came through.

We two watched the rest of the game, including the very exciting fourth quarter, then I returned him to his mother’s house.

Similar to my father and me in years past, Ben and I shared the Super Bowl together, bonding over the game, eating lots of food, watching the ads.

With a twist: captions and cues were part of our experience, as they always are, as they always will be.

A Super Sunday? Absolutely! I spent the Super Bowl with my special son, Ben, as once upon a time my father spent the games with me. Hearing or deaf, the love of a father and son endures.

The life of a Cued Language Transliterator is much like the above scenario.  We do some prep work when available:  perusing textbooks, reading newspapers, scanning power point slides, watching the DVD of “Joseph And The Amazing Technicolor Dreamcoat” 53 times in 4 days.  But the bulk of our job is one note at a time, revealed in rapid succession as people produce the phoneme combinations that we call “spoken language.”  In the ear and out the hand, as spontaneously as a professional musician who reads the notes and then plucks the corresponding strings or presses the correct valves.  We train for our jobs, but much of life is unrehearsed banter that must be transliterated immediately with appropriate prosody and without filters or prep time.  We do this every day.  It’s beautiful music.

I was at a friend’s son’s Bar Mitzvah last weekend (I have just loved saying that phrase; such joy to use a double possessive). In a quieter moment, it was revealed through our conversation about Ben being deaf, and my friend’s relatives proceeded to ask questions. Can he hear? Is he mainstreamed? Does he sign? Wears what aids?

The Cued Speech conversation: “System designed to help deaf children learn to read and write, by conveying the spoken language in a visual form, and that visual form providing the ‘phonics’ of the spoken language, called ‘phonemes’ … The hybrid, using a manual system (like signing) but conveying the oral language (so really an oral approach). The genius of Dr. Cornet’s system — whatever looks alike on the mouth is cued differently; whatever is cued the same looks different. No ambiguity.” The Constant Educator.

And we haven’t even talked about the implant!

I truly welcome the questions, and love to talk about Ben; cueing; cochlear implants; the differences between oral, sign, and cueing; social adjustments; reactions of Maddie as a hearing sibling.

I have no expectations that people would know of cueing. What people know of deafness is usually mixed up with signing. So something other than signing, especially a system that uses the hands, is pure puzzlement to most people.

So while I sometimes have a tinge of disappointment that cueing is so under the radar, it provides a great opportunity for awareness and teaching.

Deafness is Ben’s story, his identity. The story of his parents and sister, his extended family. Cueing is part of Ben’s deafness. The cochlear implant is part of his deafness. Because cueing is our history, the now and future is literacy, Ben’s ability to read and write, to learn independently.

– Never heard of Cued Speech?
– Well, do a have a few minutes?
– Excellent, because I have a great story to tell.
– It is about a young boy — a human story full of drama and inspiration.
– My connection to the story?
– The Constant Educator, of course.

(1) Can you ever really blend in when you are an outsider? Should you?

In the first day or two of our journey to Argentina, my daughter Maddie seemed oddly out of sorts when I cued to my son Ben, especially in restaurants or stores. She wanted us only to speak in Spanish, but that was impossible for Ben (and probably me too). I spoke with her in Spanish and cued English to Ben. But even when out of earshot of locals, Maddie seemed annoyed with my cueing to Ben. I soon realized that Maddie wanted to blend into the scene, and the cues were attracting attention and identfying us as “outsiders.”

I argued for using travel “judo,” and turning the situation around. Not being embarassed or awkward, but acknowledging your status and all it entails, and approaching situations with curiousity and goodwill. After all, although we were tourists, we were clearly curious and bold enough to visit, we knew the language and customs, and, on an economic level, we were spending money. Looked at this way, shouldn’t we be proud of our status? Weren’t we the intriguing tourists, Americans hearing and deaf, able to speak English and Spanish?

While the cues identified us as “not-from-here,” the cues enhanced our uniqueness as indomitable travellers. Why blend, when our difference is a source of pride?

(2) The butterfly effect?

Before heading to Buenos Aires, I had looked up the Spanish version of cued speech, called “La Palabra Complementada” and downloaded a Spanish language description from the web site of the University of Malaga, Spain, www.uma.es/moc (you can also find the web site via links at the National Cued Speech Association web site, www.cuedspeech.org). At the celebration of the 40th anniversary of cued speech in 2006, I had met the Spanish professors who have instituted cued speech in Spain, so knew something was out there. I read through the description so I could give it a whirl if it came up in conversation, and printed out the description just in case.

Arriving from the airport, we met the rental company representative and the actual owner of the apartment. I explained as best I could that we were not using a sign language but were instead using a communication system based on spoken language (I couldn’t lay my hands on the paper). Both listened politely, but the owner clearly did not grasp it.

On our last day, the owner came to check us out of the apartment (and return our deposit). She said that her daughter’s day care used some signs as part of its approach, and asked again about cued speech. I again described the concept of cueing and had, by then, found the printout describing cued speech in Spanish, the system of cues and its relation to the spoken language. She asked if she could keep the description; por supuesto, I replied.

One person in Buenos Aires, who might read the article and might bring it to her daughter’s preschool, and might discuss it with a teacher or administrator. Or maybe she only reads the article, and infrequently recalls our visit, and our cueing. Could her reading, her discussion, her memory of Ben, cause some educational butterfly effect? Could the beatings of our cueing wings, so to speak, cause a tornado of deaf communication in Argentina?

Not at all likely, I know. But sometimes I like to dream. And in the dream I see the butterfly effect of our cueing visit, and I cue to my courageous deaf son, “Can you believe it?”