"Fixing" Our Boys

"Are you going to fix his ear?"
"Is there something that could help him hear?"
"Did you know there's a great surgery that helps deaf people hear?"
"If a surgical procedure would allow your paraplegic child to walk wouldn't you do it?"

Being Deaf is unique compared to other differences such as being blind, unable to walk, having Down Syndrome.  It's historically been difficult, even for Deaf people, to pinpoint exactly how it's different.  I usually explain that the Deaf community shares a common language, norms, folklore, etc.; therefore they form a culture.  But it's more than that.  I think the real difference lies in acceptance.

If parents have child with Down Syndrome, they must come to a point of acceptance.  They can't change the facts.  They are forced to accept what is and give their child the tools needed to become successful in their life.  If parents have a child who is blind, they are forced to accept it.  There may be surgeries that help the child gain some vision (maybe not), but in the meantime, the child is not missing out on language.  They are developing relationships with their family and community.  The same goes for a child born with a limb difference or any variety of things.

For parents who have a deaf child, they are immediately told by medical professionals that the child can learn to "function as a hearing person" and "be a part of society" if only they don't sign and spend hours per day in speech and hearing training and have their child implanted.  The parent misses the opportunity to simply accept the fact that their child is deaf.  If parents could do just that first step, it would resolve so many problems.

If you've had some experience with the Deaf community, you'll know there is some anger, resentment, and defensiveness felt by some of its members regarding the issue of acceptance.  There is a reason.  Many parents held on to a "hearing dream" for their child, monopolizing a majority of the child's waking hours on speech therapy, hearing training, and avoiding gestural communication.  This fact cut that deaf child off from the world, from their peers, and from their own parents.  Here is the ASL sign that describes this constant focus on speech and hearing.  It's a very dense sign:


 Notice all of the attention is given to the areas that are NOT accessible to the child.  The superhighway that is their eyes and the natural communicative tools that are the hands (and the rest of the entire body) are ignored.

Once parents accept that their child is deaf, then they can move on much like the parents of other children who have needs unfamiliar to the parent.  [Notice I'm not saying acceptance is easy. Just necessary.]  Once they accept "deaf", these parents of deaf kids can ask themselves, "What tools can I give my deaf child to allow him to succeed in life?"  That would certainly mean using sign language in the home from day one.  It would mean visiting with an audiologist to develop a plan to aid any hearing the child might have.  It would mean meeting people in the Deaf community who could be role models to both the parents and the child.  It would mean learning how to best meet the child's educational needs.   It would mean learning to make life full of visual information for the child, constantly thinking of what their hearing peers learn by "overhearing" and making that information accessible to the child visually.  It would mean speech training.  All of these things would shine a light on their abilities.

This video, produced by ASLized says it perfectly.  I would love for you to take the 6-7 minutes to watch it.  It's amazing how much a simple change in vocabulary can change perspectives:


All of this to answer the questions:
"Will you fix his ear?"
Tian has microtia/atresia of one ear.  We've researched the surgery that could rebuild an ear for him.  The risks of the surgery outweigh the possible benefits.  Even more invasive, we could attempt to have his ear canal surgically opened.  If we did that, we would have to reconstruct the ear.  At this point, he hears well enough that his right ear is not a concern to us.  He signs, he talks, he communicates amazingly well.  If, when he's older, he wants to look into a prosthetic ear, we will do that.  If he wants to investigate opening his ear canal, we'll do that.  For now, it's just not a big deal, so we don't want to waste precious days trying to "fix" something that is not a true problem.  Even the medical website I linked above states that if the child had hearing in one year, "fixing" the "deformed" ear is elective.

"Is there something that could help him hear?  Have you heard about that surgery?"
This is mostly asked in regards to Travis.  He's profoundly deaf.  Within the year, we will have a more thorough hearing test done with both boys, but for now, we know Travis is deaf.  Totally deaf.  The audiologist cranked her sound up to 95 dB and said, "He didn't even flinch."  We can tell the same just by observing him.  In China, he had an "abnormal" brainstem evoked potential, which also verified that his brain was not receiving sound signals.  All of these facts let us know that hearing aids would likely be useless for him; nothing more than the cause of headaches.

As for a cochlear implant, it's not even something we would consider at this point.  Even if he had one, it wouldn't make him hearing, even if it "worked" which is unlikely for him.

Will we send the boys to speech training?  Sure!  If we find that hearing aids would benefit Tian, we would use them.  The point it that we focus on their abilities.  We avoid medical procedures that are risky, time-consuming, and carry a low chance of success for our boys.  Even if we DID ever implant one of the boys, we wouldn't follow the medical professional's advice to not sign.

Our kids don't need "fixing."  They need love, support, tools to use for life, experiences, education, God, role models, mentors, community.  There is plenty for them to do and learn without ....  [insert the ASL sign I showed you above].