In A Perfect World

Deciphering Dane

The Rosetta Stone was discovered in 1799 in Egypt. Renowned anthropologist Jean-Francois Champollion studied it for some 20 years before he was able to decipher its content and, in 1822, provide the world with the process by which hieroglyphics could be interpreted. Even with his inestimable knowledge and professional qualifications—aided by two versions of Rosetta’s text in known scripts (Greek and demotic)—it took two decades of dedicated effort before Champollion understood Rosetta’s full meaning.

Comparatively, I have also had almost two decades to decipher my deaf son, Dane, whose hearing loss shrouded certain fundamental considerations with mystery. How best to communicate with him, raise him, educate him, and socialize him for life in this world presented new challenges every time we thought we’d figured something out. There have been very few simple answers for any of this. I envied my friends for the easy go they were having with their hearing kids. Sure, they faced some tough questions, but we were dealing with increasingly complex riddles:

How can so many opposing communication ideologies all be “the best” according to their experts citing the “research”?
Describe why this child in a classroom with 35 kids his own age is often completely alone?
Explain your spirited defense of the teacher who volunteered to do unauthorized after-school workshops on slang and swear words (covering both signs and speech articulation).

Field Notes to Parents

For Erika, Lisa, Traci, Hina and about 500 other parents who have asked me directly and personally (gulp) about the choices that my husband and I have made for Dane: here is what I am willing to say about what I’ve learned…

Forays into our personal choices are not going to be that helpful to you. For starters, I don’t want anyone to assume we hold ourselves up as a model to be emulated, (we don’t). In spite of my musings about what it’s like “In a Perfect World,” I have never lived there; furthermore, I’ve never lived in your world. So brace yourself: the only thing I’m pretty sure of is that every single child who is deaf or hard of hearing is like a Rosetta Stone. I’ve been deciphering the “Dane” Stone, which I’ve misread as often as I got him right. You will be deciphering the Jose Stone, the Ford Stone, the Morgan Stone, the Manezeh Stone and about 500 other cryptic mysteries that resist a uniform solution. My answers are not your answers. The sooner you grow comfortable with the realization that with communication choices there is no formula…no guarantee, the sooner you’ll engage at the right level: personal investment in finding what works for your child. The opposite of this is to remain in a passive role. Like a ship without a rudder, you’ll be blown this way and that by every person with an opinion and every professional with a different point of view. You may never find your course, and ultimately, you may never reach your destination. You will learn to defy anyone who would tell you different.

The Wonders I have Seen

Along this journey, I have personally witnessed many wonders, spectacles (and some horrors) that have convinced me there is no one communication approach that works for all children who are deaf or hard of hearing. I’ve seen wonderfully successful children in every mode or method category, as well as children for whom those respective modes and methods haven’t worked. Every time I saw something that seemed to scream “aha, this is the way!” there would be something else yelling right back “if only that had worked in our case!” I have saved mental postcards from my visits with:

Three children with hearing loss in the same family—all of them using cochlear implants. They’ve all been exposed to sign language and spoken language right from the start via a Total Communication approach. They are beautiful signers with incredible oral English. They are on grade level and they’re doing great in school.
A little girl with a normal IQ who was identified with hearing loss at birth, received state-of-the-art amplification, early intervention services, and later educated by qualified teachers of the deaf in a special Total Communication preschool & elementary program just for children with hearing loss. By age seven, she only had the communication and language skills of a three and a half year old, according to independent evaluation. Her parents were suing the school.
A culturally Deaf family whose young deaf daughter wanted to speak, which they initially resisted but eventually supported. From a foundation in ASL, with the help of a cochlear implant, she learned fluent spoken English, and is an intelligible, articulate, successful mainstreamed high school kid today.
The very successful cochlear implanted, mainstreamed oral teenager whose loneliness made him suicidal until he found his niche at the state school for the deaf where he is thriving with new found friends and American Sign Language.
A hearing mom and bilingual deaf dad who assumed their children (all with hearing loss) would be visual communicators—NOT. Being offered good models of both spoken English and fluent sign, the kids emerged with oral inclinations. They came, this mom will tell you, wired to listen and speak.
A family who wanted to use Cued Speech, only to be told there was no one trained in the entire state to provide support; this family learned how to Cue anyway, and convinced their school to take it on. Now others (parents & professionals alike) have moved to this rural area that became a Cueing haven.
A teenage girl with mild/moderate hearing loss whose parents struggle for services and support has been as challenging as anything those of us with a profoundly deaf kid have experienced. She has felt adrift between the hearing and deaf worlds without a sense of really belonging in either one.
Deaf kids who bonded strongest to other deaf kids, and others who bonded to their soccer team, their Brownie troop or their hearing cousins.
More than one child whose cochlear implant just didn’t work for him, even though the family and service providers did everything right.
I’ve seen kids who were identified early, received good intervention services, used cochlear implant technology, and relate comfortably in the “hearing world”; other kids who were identified early, received good intervention services, learned American Sign Language and relate comfortably in Deaf Culture. Both groups enjoy their lives and feel like they’re a part of a community without a sense of loss that they aren’t part of the other group’s world.
Conversely, I’ve known kids who exclusively talked or signed but wished they had the others’ ability. They feel ashamed to admit these feelings to their parents and members of their “mode” community.

The message written on the back of each one of these mental postcards is, “This may be true for your child, too, or it may not be true for your child.” Only your child can show you which kind of kid s/he will turn out to be. You will learn to resist those who make predictions for an outcome they cannot control.

Risking a Rant

If you’re tallying up whether I listed equally supportive vs non-supportive oral/sign scenarios, then you’re missing the point entirely. I’m simply trying to demonstrate that for every “truism” there is an equal and opposite “falsism” plus an a lot of weighty, highly variable subtext to these issues. There are too many living examples all around us that debunk all the hard line generalizations, “sacred” dogma, and subjectively interpreted evidence about what’s best for children who are deaf or hard of hearing. Personally, I’ve learned to be skeptical of some of the research cited in support of each ideological school of thought. You will discover that it’s often produced and presented by the respective “camps” that selectively ignore broader contexts, heterogeneous control groups, and, well, any study that contradicts them. Further, if it’s not looking at communication in changing environments and over a long enough span of time, (i.e., longitudinally…most of them aren’t), it’s going to miss the child’s feedback. This “end-user” perspective is probably the most important indicator of the effectiveness of all our efforts. You’ll find that this cannot be ignored.

The Lexicon

The Rosetta Stone would probably still remain a mystery if it weren’t for the Greek and demotic lexicon, and fortunately, I think we have some similar advantages. While there may not be one communication approach that works for all DHH kids, there are certainly basic needs common to every human being that must be addressed. The process of meeting them provides a lot of illumination about which mode or method of communication is right for your child, and how that question and its answer can change as s/he grows.

Keep a close watch on these fronts and strive to understand and address each in the context of your child’s abilities, inclinations and personality:

Is my child’s language level appropriate and comparable to that of typical hearing peers?
Does his vocabulary and communication mode/method enable him to express what’s on his mind and in his heart?
Does she have access to and understand all of the communication that’s happening around her?
Does s/he have good language models (parents and caregivers had better be able to say yes here) whether the language is signed or spoken?
Are all the components of your plan in place, i.e., is the sound and/or sight technology and communication strategy fully, functionally and effectively intact?
Do your professionals and service providers ask questions about what your child seems most comfortable with, and teach you how to recognize important cues from your son or daughter?
Are her educational setting and teachers right? Is he making the grade at his age/grade level?
Does your child have friends, and as s/he grows, do his/her friendships provide a genuine experience of trust, mutual support and in-depth communication exchange?
Do you hover and rescue, or let her make her own decisions…her own mistakes…and learn all the wisdom that comes with experiencing cause & effect relationships?
Are you sending a clear message to your child that he has your love and acceptance just as he is, no matter what?

Obviously, this list could keep growing and it should. It might even take 20 years to complete it and understand its full meaning. ~