At 17 months I brought my daughter home from Russia
believing she was deaf. Our first BER
test, shortly after getting home and managing some minor and reoccurring health
issues, indicated that Katie was “technically” hard of hearing – severe in one
hear, moderate-severe in the other. At
this point I was reaching out for help.
I had already had Katie assessed for early intervention, I had sent an
e-mail to deaf community services, I had attended ASL story time at the
library, and attended a “parent links” play group. We started getting in home speech and
language services. At this point, I
still had not met a deaf adult. I
attended panel discussion at what would later become my daughter’s school and
met a couple deaf adults, important to mention that though they could sign,
both were also oral. We attended deaf
family camp, and again, the vast majority of the deaf participants were
oral. I do consider myself somewhat
lucky that 3 of the first connections I made with hearing parents of deaf
children, were with families where at least one parent was active in the deaf
community and fluent with ASL. That
being said, two of the 4 children used ASL (one also had a cochlear implant),
the other 2 used hearing aids and did not use ASL.
Katie was in a Total Communication class at Lafayette, the
only deaf school in San Diego that offers ASL, which in the early years
includes SEE. When Katie turned 3, I was
forced to choose between an oral program that absolutely would not support any
sign, which at this point was her most common form of communication, or the TC
class housed at the same school as her early intervention class.
I can honestly say I was actively “encouraged” to send Katie
to the oral school, regularly reminded of how much residual hearing was
available to her. I thought I was doing
the responsible thing by visiting both schools, but in hindsight I really
didn’t understand the climate in which my view would be skewed (I’ll talk about
this later). After visiting the
classrooms, and listening to the advice of Katie’s “team,” I made the tough
choice of sending her to the oral school. I think in my heart I knew it wasn’t
the best decision, so I also moved her to an after school care provider that
was also somewhat fluent with ASL.
Katie spent an entire school year between 3 and 4 at the
oral school, and I attended monthly meetings at the school. That year, Katie made little to no language
progress. I also noticed that she was a
little more withdrawn than usual. Every
meeting I expressed my concerns about her lack of progress and I was reminded
that because of her early start in the orphanage, with no access to language,
Katie’s hearing age was very young. I was urged to stop signing with her at
home (at that point my ASL skills were very rudimentary), and was even told
that letting her continue to sign was likely hindering her development in
spoken language. I continued to sign with her at home, insisting to her teacher
that I would not even entertain the idea of taking away her only language until
she was able to communicate in the “preferred” language. During this time I was
also attending a family ASL class at the deaf cluster high school, taught by
the deaf counselor 1-1/2 hours a week, during my work day.
I was also reading books, blogs, studies and learning about
deaf culture. I had read those important
and recent studies out of Gallaudet indicating that using sign did not hinder
oral language development, and in fact, it actually activated more of the
child’s brain.
By the end of the school year, disappointed with Katie’s
progress, and disenchanted with the program and their outdated beliefs, I decided
to go back to the TC program that included signing. That summer, in a TC class, Katie made more
progress, and more importantly she appeared much happier. That was the summer when I truly embraced
that my daughter was culturally deaf and I needed to get serious about learning
her language, finding her community, and helping her build a healthy deaf
identity. I quit my job, enrolled in ASL
1 at the local Community College, and made a point to attend deaf functions,
ASL interpreted shows, etc.
I was so far adrift from my comfort zone, it was
humbling. Trying to communicate in a
language that was so nuanced and difficult to learn, and routinely having to
ask people to repeat, or slow down. I
did it, because there was no other choice, I owed it to my daughter to work at
least as hard as she was to find her place in the world. We continued down this path, attending family
signing classes, deaf coffee night and I continued on through ASL 3 in the
community college.
I spent more time at her school and became more and more
concerned about her learning environment and her peers. For the past 2 years Katie has been in a
small “special ed” combo class (TK to 2nd grade), where, in my
assessment, the majority of kids had other “attention” issues that were probably
more inhibiting to their learning than their deafness. Early on I believed Katie shared this
characteristic, but later after attempting to mainstream her for ~1 hour per
day, I determined that Katie’s inattentiveness/squirrely behavior was likely more
situational and a secondary behavior learned from her environment. I have attempted to mainstream her with an
interpreter for part of her days, but aside from some social benefits, she was
not getting any academic lift.
This leads me to my current situation. My signing is still far from fluent, the only
time the remaining ASL classes are offered are so restrictive I would not only
have to hire someone to pick my kids up from school, do homework, feed, bathe
and put them to bed 3 out of, 5 nights a week, but I frankly would not see them
for more than about 40 minutes in the morning on those days. A price I am not willing to pay. Katie has made meaningful progress
educationally, but she is still well behind a typical hearing child her
age. I use that as a comparison not
competitively, but because I have the same expectations for Katie as I would a
hearing child. I want, and expect to attend
her college graduation whether it be from Gallaudet or a non-deaf university
–her choice.
While I am still concerned about her academics, my
overriding concern at this point is social emotional and a concern for her self
image. I also do think there are gains
to be made by having a peer group that includes children that are achieving at
or above the level you are working toward.
So what do I do about the fact that she is in a small special ed
classroom of only a few boys, some of which are not interactive. I pose this dilemma to friends, deaf friends,
hearing parents of deaf kid…and never get an answer I can fully embrace.
I can’t in good conscience send her back to an oral school
knowing how it was for her in the past as well as understanding more about her
learning style. I can’t send her into a
mainstream classroom with an interpreter because she is too far behind, not to
mention that the material is sometimes not conducive to a deaf learner (i.e.
phonics). As much as I would love to, I
cannot send her to the deaf residential school, given her early start in an
orphanage. I can’t easily move because
of a shared custody arrangement with my other child, who also has
social-emotional considerations. So what’s left, help Katie find some
appropriate, interactive deaf kid friends her age, which in San Diego, the 8th
largest populated city in the United States, is like finding a needle in a
haystack.
This brings me to my insurmountable problem…why are there no
deaf, signing children Katie’s age in our school district? While I know
deafness is low incidence, a trip over to the oral school and a roster of mainstreamed
children with IEPs listing deafness would show you an overall shortage of deaf
children in San Diego is not the problem.
When I am on campus at Katie’s school I see a double digit
number of kids in the early intervention Total Communication class, they are
supposed to be getting both ASL and oral support. I would bet my entire retirement account that
less than 30% of these kids will stay here, the only school in San Diego
Unified School District that supports sign…WHY?
I would suggest this is an insidious perpetuating cycle, they are being
encouraged to go to the oral school over the school they are already
attending. Even the vigilant parents,
which I consider myself, who go visit both schools are inclined to opt for the
oral school, why, because when you look around the most visibly “successful”
students are at the oral school. They
overshadow the ones there who are clearly out of their element, as Katie
was. When you visit the TC class, the
kids who stayed are typically deaf plus, kids who have other health concerns,
or fall on the spectrum, whose deafness is often secondary to other
issues. While these kids might be
showing progress, it is not the progress we would likely be seeing if the only
“special need” in play were deafness. So
year after year, this continues, unquestioned and unresolved.
I would also add there is a different culture of involvement
that whether by accident or intentional translates to the message we send to
our children about the importance of their education. In the oral program we
had monthly meetings and support groups on campus, in the TC program there is
nothing of this nature. I can tell you on family Fridays and open houses at
Katie’s school I am frequently the only parent there in our class. Has Katie’s classroom turned into a virtual
“respite care” for an overburdened parent that doesn’t hold out much hope for
their child? I don’t know.
I take my daughter to deaf coffee night most Fridays, it is
one of few times she is surrounded by people who are at least attempting to
speak her language. There are usually no
other kids, and my 6 year old never wants to leave. We are often there past 10 o’clock and if it
were up to her we would be there until they close. But again, is it enough to have deaf adult
friends when you are 6? I think Katie
has subtly been answering that question for me.
It is probably no coincidence that she sometimes start talking, without
signing in the car when I pick her up from the afterschool program. Where before she would opt not to put on her
hearing aids on days when it is just her and I, she never does that
anymore. Recently we were at a party,
all hearing people/kids. Katie was in
the hall with 3 little girls and I heard one repeat herself a couple times, I
went into the hall to “interpret” for Katie and as I started to sign Katie
grabbed my hands to stop me. It was
profoundly heartbreaking, in that moment I knew that Katie viewed signing as a
barrier to her inclusion.
Now I want to add a piece to this that rarely ever gets
aired.
While I have some great,
supportive, deaf friends. I belong to
online communities and have been involved in discussions that jump straight off
to “audism.” “hearing privilege,” etc. I
accept criticism, listen to half-baked advice that isn’t shaped with my
daughter in mind, for any little nuggets of useful information I can get. I am growing so tired of the revolution of
complaining about “hearing privilege” and the criticism, where are the
solutions? Why is this cycle allowed to
continue, unchecked, in San Diego, the 8th largest city in the
United States, and no doubt countless other areas. This problem is not going to be solved by the
school district and hearing parents, this problem needs a community fighting
for the future of its members and culture to move past criticizing and
publishing studies to taking action.
I
keep reading transformational stories from families who were given “deaf
mentors” as part of their early intervention.
Where was Katie’s “Deaf Mentor?”
When I pose this question, I never hear, San Diego’s deaf community has
“failed” their deaf kids, instead, the problem is me not making the right
connections, or the “system wrought with audism” would never allow it. But really where is the grass root movement
of the deaf community reaching out to help guide and shape the future of their
members? If I did the research and tried
to start a deaf mentoring program here, I have no doubt I would get the wrath
of the community and very little support for being a “hearing privileged”
person taking charge of something that “belongs” to deaf people.
Meanwhile I will learn more about deaf mentors and will
likely even find one myself, but how is that going to solve the bigger
issue. The loss of culture at Katie’s
age likely to continue into the future.
When Katie finally comes to me and tells me “I want to go to a regular
school and go to a class where I can have friends, how do I answer?
I continue to follow these hearing parent deaf culture
groups, and listen, with an open mind and an even bigger broken heart, while
deaf adults criticize Signing Time because it is not “promoting the deaf
agenda.” Well frankly, it is doing
something positive for our deaf children.
In Katie’s case, where she is socially starved, if her ice skating
friends and other hearing friends are interested enough to watch signing time
to learn some basic signs, I am a supporter.
If this programming is so offensive, where are the deaf driven
alternatives? I look for them, I would
even support crowd funded programming if it were good. For 4 years I have searched for a signing
class family or formal for my hearing son, Katie’s older sibling to learn
ASL. There is almost nothing. We used to attend a family class at DCS, but
the kids component, I might add taught by deaf people, was a joke. They played animal games, and attempted to
teach him very little functional language.
I recently found that the Kroc Center teaches ASL to kids, and mentioned
it to deaf friends and the response was “I bet it is taught by a hearing
person.” Honestly at this point, I would
pay to send him to a Rachel Coleman sponsored class, why? Because absent a
better option, it is taking a step in the right direction.
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