We have two children with severe-profound hearing impairments. My husband & I
have both heard "typically" from birth, and our children's hearing impairments
appear to be inherited recessively. Our daughter is almost 5, and has had an N22 CI
for 2 years (I suspected her hearing loss at 5 months and it was diagnosed at 9 months;
she is and has always participated in auditory verbal therapy). Our son is 18 months
old and has been aided since 6 weeks of age (diagnosed when he was 15 hours old, also AV
approach). He received his N24 CI on December 3, 1998, and his surgery was medically
successful. We are waiting for his device to be programmed and are excited that he
will soon "hear" like his sister. Only time will tell how he responds to
the CI, but given his progress thus far, I believe he will do well. I think it most
significant what our daughter (5 year old CI user) has said in regard to our son's
implant: "J___ go to hospital. He get implant. He hear Nancy
(our therapist) say ba-bee-boo (one of our daughter's early speech drills). He be so
very happy!" That is a direct quote from a 5 year old who has used her cochlear
implant for only 2 years.
Our daughter is doing well with her cochlear implant, and for us it has been a fantastic
technological opportunity. She has speech awareness for all the Ling sounds at 15-20
dB, and hears just about everything environmentally. Like most children her age, she
demonstrates a certain amount of selective listening!! Her puretone numbers are in
the 35-40 dB range across the speech frequencies, and her speech awareness is at 15 dB.
One of her favorite sounds right now is listening to the bubbles of her coke just
after pouring it and hearing the rain! She enjoys music and singing...amazing to me,
and certainly beyond my expectations for what the CI would potentially offer her. At
one year post implant she had a vocabulary of almost 500 words and was beginning to speak
in two word sentences (we started with a vocabulary of 30 words or so, all a struggle to
get in hearing aids plus FM). At two years post-implant, her vocabulary is somewhere
between 1800-2000 words. She is using 5-9 word sentences and will often string
together multiple sentences to convey a more complex message. She is asking and
answering questions. According to her therapist's latest testing, her auditory
understanding is age appropriate and her ability to express herself is at approximately
age 4 (only one year behind...very significant because her ability to communicate still
exceeds her hearing age of 2 years). She loves to read (just learning) and be read
to. The gaps in her expressive communication now are modifiers (like a, an, the),
consistent use of prepositions, and regular use of past tense verbs - - - the finer points
of speech. All of these skills are improving each day. She attends a
mainstream pre K class and takes dance lessons. She is doing well in both, and we
are very proud of her.
As parents we have made the best decisions for our children that we could after
researching our options very thoroughly. Making the decision for our son to receive
a CI was much easier than making that decision for our daughter, because we have already
lived the miracle of her fantastic progress. For us the cochlear implant decision
was never taken lightly. We examined all the facts, and like many parents of cochlear
implant users, are VERY educated on the subject. In addition to reading three
textbooks on the subject and numerous articles, we interviewed parents of cochlear implant
users, adult cochlear implant users, and observed children who used cochlear implants.
We interviewed two different cochlear implant teams and attended a 3 day symposium
on cochlear implants before making our final decision. We read the position paper of
the NAD, CICI, and the American Academy of Audiology.
Did we research the other side? Did we consider sign language? Of course, and
in addition to researching our options, we also met a signing deaf adult.
Ultimately, we know that our children will always be deaf. They will always
face challenges that my husband and I cannot completely understand. I am thankful
that they have one another to share the experience of deafness. True understanding
comes only from living an experience. I have lived the experience of having
cancer...but that experience shapes only a part of who I am as a person. I believe
the same is true of any other circumstances or conditions we face in life. We are
shaped by our experiences, circumstances, and conditions, but they do not represent the
totality of our beings. Deafness will always be a part of our children's lives...but
it is only a PART of who they are. It does not define them, and with the cochlear
implant, they can decide the degree to which they want deafness to define who they are as
people. It is true that we are defined by how we communicate, because how we
communicate can open or shut doors of opportunity to us.
I have given and will continue to give my precious children my best. If in the
future they want to live in the Deaf community, so be it. That will be their choice,
and as a mother who loves them with all my heart, I will support their decision. At
least they will have the choice. At that point, it will be up to the Deaf community
to decide whether or not it will accept diversity within its own exclusive culture.
Deaf culture will have to decide the degree to which it will grant to others what
it has been granted by American society at large...acceptance of diversity. Oh
yeah...and to accept children with cochlear implants, the Deaf community might start by
changing the ASL sign. What about fingerspelling "c-i" at the ear, instead
of "snakebite to the ear"? Let's open the doors of communication with one
another, and play as a team, instead of adversaries.
Andrea
Read more about one of the Hill's children in Jessica's
Story
