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ODYSSEY 201366
Why do parents seek other parents? They want advice, tips, and/orwisdom; they want to share stories; they want to learn from theexperiences of those who have traveled a similar road before them. Sometimesparents bond with each other, and sometimes they form close friendships. Parentswant informational and emotional support. They may prefer support that focuseson a specific concern, question, or need. They may also simply want to be a part ofa group—for socialization, activities, or workshops. They may prefer to getinformation directly from others rather than through reading literature or searchingonline.
Parent-to-parent support is vital for parents of all children, but, of course, it is especially vital forparents who have deaf or hard of hearing children. Without the support of other parents, those withdeaf and hard of hearing children can easily feel isolated, confused, and alone. Once they meet eachother, however, those same parents feel enriched, both by learning about the experiences of othersand by sharing their own.
Access is key—to each other for comfort and meaningful support, to information for theknowledge they need to support their children academically and emotionally, and, above all, to theirchildren’s thoughts and feelings. At the American Society for Deaf Children, our goal is to supportparents and their children in whatever way they need to gain access. Below are two parents’ stories.
Embracing “Deaf” with a Capital DBy Jenny Ronco
Every family’s initiation into the world of parenting a deaf child is a unique and defining moment.No matter how events evolve, there is always that day, that comment, that look, that doubt, or thatdoctor’s appointment in which a rift forms, a divide between what we took for granted before and
Jodee S. Crace,MA, is president of theAmerican Society forDeaf Children (ASDC),www.deafchildren.org.She is the mother offour sons, three ofwhom are deaf and oneof whom is blind andhard of hearing. Aresident of Westfield,Indiana, she is a deafmentor and parentadvisor, visiting homesof families with deafand hard of hearingchildren as part of theSensory [Kids]Impaired-HomeIntervention (SKI-HI)throughout centralIndiana. Crace alsoteaches a summer courseon infants, toddlers, andtheir families forGallaudet University.
By Jodee S. Crace, Jennifer Ronco, and Tami Hossler
foR paRents and childRen
access is key—to curriculum, to
services, and to each other
Photos courtesy of the American Society for Deaf Children, Jennifer Ronco, and Tami Hossler
Right: Organizations
such as the American
Society for Deaf Children
offer parents critical
support, allowing them
to share experiences and
information.
2013 ODYSSEY 67
left: A father and
daughter involved in
the Deaf Role Model
Program learn how to
sign I love you.
far left: A mother
learns the sign family
from a deaf role model.
Jennifer Ronco,MA, is a mother, wife,teacher, pet lover, and“wannabe farmer” in SanDiego, California. Sheearned her bachelor’sdegree in mathematicsfrom CaliforniaPolytechnic StateUniversity and hermaster’s degree ineducation of the deaffrom San Diego StateUniversity.
Tami Hossler, MEd,an ASDC board memberand editor of ASDC’sEndeavor, lives in FortMeyers, Florida. She hastwo adult daughters, onedeaf and one hearing.
The authors welcomequestions and commentsabout this article [email protected],[email protected],and [email protected].
what we will take for granted for the restof our lives. I’m grateful that mytransition, a terrifying experience fromone side to the other of this great divide,only took 24 hours. When the Deafcommunity—and the hearing families andprofessionals within it—offered their supportand complete unconditional acceptance of mydaughter, my family, and myself, I was ready toaccept it. This acceptance granted access to acommunity I would never have knownotherwise. In turn, the Deaf communityprovided my daughter with access to language,opening the door to clear communication withinour family and access to spoken and writtenEnglish. All these elements empower her tosucceed academically and use her communicativeflexibility to enrich her life with an array offriends.
Our journey started on a Tuesday in May. Firstwas the telephone call. On the other end was atechnician. The information he provided washeavy on strange vocabulary and light onusefulness. I heard that my baby daughter had abilateral severe to profound sensorineuralhearing loss without having any idea what thatmeant. “She’s not deaf, she’s bilingual!”was my
knee-jerk response as we blamed our long waitfor expressive language on the German/Englishinput we provided at home. It was quite a waveof denial, but I pushed through it enough tomake contact that day with the local Deaf andHard of Hearing (DHH) program in our schooldistrict. By lucky timing, I was invited to adistrict-wide potluck the following evening tocelebrate the deaf and hard of hearing seniorswho would graduate that June. I went with myfamily.
At this event, parents shared their stories andthe soon-to-be graduates talked about theiraccomplishments, struggles, and plans. Theevening was a mosaic of speech and signs. Whenwe were announced, along with the fact that wehad received news of the diagnosis only the daybefore, everyone in the auditorium stood up andgave us a spontaneous ovation. Every prospectivegraduate stopped and visited my daughter, whowas in her stroller, to sign “hi” and “welcome.”Every one of them voiced the same to me.
Following the event, staff from the DHH
ODYSSEY 2013
program encouraged us to visit thepreschool, which I did that Friday. Atthe preschool, my daughter wasimmediately invited to join in thoughthe staff didn’t even know our last name.That obstacle was waived aside, and Iwas informed that the “paperworkwould follow.” We stayed and played.Dakota, her big brother, and I were senthome with name signs for each child anda stack of books and videos to get usstarted on signing at home. Our journeyinto the world of American SignLanguage (ASL), hearing aids, andlanguage acquisition started in thatcolorful and safe classroom. The GermanI had used with my daughter for theprevious 17 months was set aside;bilingual in our household took on awhole new meaning—English, ASL, andaccess.
I would easily learn as much on thosemats and tiny blue chairs as I learned inmy college-level ASL 1 class. I wassuddenly teaching a language that I didnot know to my children. There was notime to waste. Dakota needed to knowthat I was her mom and she could tell meanything. I needed to learn, too, quicklyenough to teach and fluently enough tolisten.
Pitfalls of awkwardness, self-doubt,and a feeling of ineptitude wereinevitable, but all paled to the reward ofcommunicating with our toddler.Dakota learned to sign “no” in a few
days, and could “talk back” in signs injust over a week. Within a month shefigured out that she could get the lastword in any argument simply by closingher eyes.
I remember when she tested herboundaries by stepping away from metowards the curb. She rapidly signed“no, no, no” and squeezed her eyes astightly as she could. Then, hands on herhips, hair shining in the morning sun,and chin jutted out like a little bulldog,she moved away—punctuating hercommunication with a giggle. She wasone satisfied toddler. She had beenwaiting a year and a half to let me know
what she thought about some of therules we had around the house. Now shewas doing it.
Today Dakota is 13 years old. Shestills says what she thinks, and I feellucky to watch and listen to her. Whensign language classes and parentworkshops proved inadequate, I made abig move and got a master’s degree indeaf education. Yet I cannot keep upwith my daughter. She navigates thehearing/deaf worlds with grace. She is ontarget with academics and approachescommunication with an open-mindedpersistence that is a sight to behold.
Dakota learns new and abstractinformation most quickly with ASL, andshe articulates her questions andunderstanding in written and spokenEnglish. She asks for clarification whenshe needs it, and she tends to takedifficult concepts on a “test drive” inASL and English to see where theconnections are strongest, and pursuesher questioning from there. Watchingthese moments makes our family’sbilingualism less of a journey and moreof a gift.
The Deaf, with a capital D,community and culture had stood andapplauded a diagnosis that makes mostof the population shake their heads.From the beginning, ASL easily andimmediately granted my daughter avoice. Through ASL, she gained accessto the wider community and a rigorousacademic curriculum. She is empoweredwith fluid communication skills,ensuring her continued successacademically and socially.
When did I find and embrace the Deafcommunity? The minute I picked upthe phone and they gave us access—andembraced us.
Finding the Missing Pieces—Other Parents, Deaf AdultsBy Tami Hossler
When we learned our second daughter,Erica, was deaf, we were overwhelmedwith questions of what to do. Like mosthearing parents, our daughter was thefirst deaf person we had ever met. While
68
From the beginning,
ASL easily and
immediately granted
my daughter a voice.
Through ASL, she
gained access to the
wider community and
a rigorous academic
curriculum.
Left: Jenny Ronco and family on the John Muir Trail.
2013 ODYSSEY
we went through all the motions ofdetection and early intervention, we stillfelt a huge part of the information thatwould form the equation we needed tohelp us raise her was missing. What wasit that we needed to know?
We didn’t know what was missinguntil it walked directly into our path.For us, the missing pieces were twoforms of access: we needed anotherhearing parent who was going throughthe same thing, and we needed a deafadult mentor to give us insight, advice,and support as well as the tools tocommunicate with our daughter.
Living in a rural area, we finally foundaccess to a preschool designed for deafand hard of hearing children—an hourand a half away. For the first five years ofour daughter’s life, we made the trip tothat preschool four days a week. That iswhere we began to meet other hearingparents. It was a great relief to be able totalk to others who were going throughthe same things we were. Access topeople like ourselves enabled us to makesome amazing lifelong friends.
Yet, something was still missing. Itwasn’t until we moved to Indianapolis,so our daughter could attend the IndianaSchool for the Deaf, that we found theother missing piece. Here we realizedthat access to and mentorship fromparents and professionals who were
themselves deaf was critical. Theyhelped us acquire fluency in ASL. Theyhelped us understand the cultural moresof the Deaf community. They helped usset up our home to be visuallyaccommodating. But most of all, theyhelped us embrace our daughter; wecould understand and appreciate her forthe child she was and the person she hasbecome.
Providing our daughter with fluencyin language was always our number onepriority. We couldn’t fathom not beingable to communicate with her. Thismeant that we, her parents, needed tolearn the language that was mostaccessible to her. This language was signlanguage. From the moment we learnedshe was deaf, we started learning signs.Unfortunately we didn’t have full accessto ASL until she attended the IndianaSchool for the Deaf. Prior to that wetried a variety of signed systems—all ofwhich proved inadequate and frustratedus often. ASL, the language of the Deafcommunity, enabled us to deepen bothour awareness and skills, and thereforeincrease the access our daughter wouldneed to the community she would callher own, her school curriculum, and tous, her parents.
We learned how important it is forindividuals to have a connection toothers who use the same language and
live similar experiences. For ourdaughter, this came through her schooland the Deaf community. By attending aschool with other children who weredeaf, she became connected to deaf andhard of hearing students from across thenation. Later, when she enteredGallaudet University, she connectedwith deaf and hard of hearingindividuals from around the world. Justas important, the access that ASLafforded her to understanding Englishand the school’s curriculum, throughreading, exploration, discussion, anddiscovery, assured her access on par withher hearing peers around the country tothe world we live in today.
Erica, now a graduate of GallaudetUniversity, works at the CaliforniaSchool for the Deaf in Riverside andtakes courses towards her master’sdegree. We don’t see her as often as wewould like, but we know she is happy—in fact, she is loving her life. This, ofcourse, is what most parents want fortheir children. We could not ask formore.
As we reflect on the path our liveshave taken, my husband and I agree: Itwas us, not our daughter, who needed anintervention. We are thankful toeveryone who made our journey togetherso special, and we continue to workalongside the American Society for DeafChildren, the Deaf community, andother parents, professionals, and deafindividuals to ensure educationalequality for deaf and hard of hearingchildren.
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Above: Tami Hossler and her husband with their daughter, Erica.
