Monday, January 23, 2012

"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].

Thursday, January 12, 2012

Our Little YouTube Stars

You all know I've been posting videos and blogging about the boys' language development.  This blog began as a way for friends, family and others interested in adoption to follow our journey to one son.  During that process, the one son became two sons and now here we are!  The Brown Seven!  Our most recent video has not gone "viral" according to YouTube standards, but it's gone viral according to our standards and it's been fun!  I've enjoyed receiving emails and comments from people all over the US and even other countries.

The boys have attached to us unusually well, so I didn't have a lot of "adoption issues" to blog about.  The focus of my blog naturally transitioned to the language development happening in our home.  Even with our backgrounds in the Deaf World (husband is Deaf, I'm a fluent signer for over 15 years), Ken and I were daily astounded at what we were seeing in front of our face.  So we began filming the boys when we could and sharing their progress online.

We had three birth children before adopting the boys.  Of course, we signed with all three of them and they could each sign before they could talk, but it was different with them.  We made some mistakes along the way, and Ken was gone all day at work, so the kids and I talked without signing the majority of our day.  The kids would sign in the evenings when Ken was home, but only if he was in the same room.  Because of this, we found ourselves having to work extra hard to play "catch up" around the time they were 8, 6, and 4.  Their speech had quickly passed their ASL ability, which is not a good thing when one of your parents is Deaf.  They could always sign, but during this time we realized we had all just gotten lazy and Ken and I had let them slide when it came to ASL fluency.  The younger two would often depend on the oldest to communicate for them.  Well, several arguments and a LOT of hard, strategic work later, the kids caught up.  I'm thankful we caught and corrected our mistake back then because they are truly, naturally bilingual.  It's a beautiful thing!

With the boys, it's been immensely different.  Ken and I learned from our mistakes the first time, so are much more strategic (I use that word often) in the way we communicate and require the boys to communicate back to us.  A contributing factor is that Travis is Deaf.  Since he's Deaf, the kids and I sign all day.  Tian has to sign in order to communicate with his best playmate, closest friend and brother.  The older Brownies model language to the boys all day long.  Ken and I do, the boys grandparents sign when we see them every week.  The consistant exposure to language that is accessible to them is the major reason the boys have progressed so quickly.  We homeschool, so both boys are exposed to ASL 24/7.  Tian hears us speak, too.  He hears the TV, radio, and lots of overheard conversation, so I don't worry about his speech.  When he does choose to talk, he's speaking very well.  He chooses to sign more often, which makes sense considering his environment.

I can't imagine where they would be if we had wasted these first six months with them taking them to audiologist appointments, speech classes, and trying to figure out language apart from their superhighway eyes!  Will we eventually do hearing aids?  Possibly for Tian, but it Travis is 100% Deaf, so hearing aids are pointless for him.  Will we do speech classes?  Yes!  We'll most likely try those out some time this year even.  It just won't be the center of our hopes, our joy, our world, or the value we place on the boys.

But I digress...

Tian came to us just two days before his second birthday.  We quickly realized he could hear well at least on his left side.  He would babble, but our Chinese guides told us that other than two "baby-talk" words, he wasn't saying anything understandable.  When spoken to in Mandarin, he seemed to understand a lot.  He would communicate with us by pointing, whining, crying, smiling, and saying two words we weren't sure about.

Travis, who had just turned three, came to us with ZERO language.  His only form of communication was pointing, crying, laughing or facial expressions.  He could hear absolutely nothing, so we knew that meant he had lived three years with no language.  When he was really upset, he would bang his head on the floor or crib.  He would hit himself on the head.  He would drool.  He would also giggle and laugh and smile when he was happy.
First evening together. Travis doesn't like Tian to get too close.
The head-banging stopped after about two or three days.  The drooling stopped a few days after that.  Within a week, he was communicating to us that he wanted to eat, drink, or go potty.  Now, six months after we first met, the boys can communicate way beyond basic needs.  They have more words than we can count.  Travis, being a year older, can pick out and identify objects as being the "same,"  loves "I Spy" books and can play Memory games.  He has started re-telling events.  For example, his sister told him that his Nana and Pappy were coming to visit and would be here soon.  A little later, when his dad came upstairs for lunch, Travis ran to him, tapped him, and told him that Nana and Pappy would be here soon.  Both boys are able to play with language, teasing us by knowingly using the wrong sign.  Travis teaches his little brother by holding his hand and forcing it into the correct shape.  I caught him doing this with the difficult-for-a-two-year-old word: GOAT.  I wish I could capture every moment on video, but I'll settle for these memories to live in my heart!

Thanks to all of you for following this blog and our You Tube channel.

Sunday, January 1, 2012

New Year, New Perspective

Happy 2012!!  I don't know about you, but that number astounds me!  As one born in the 1970s, the 2000's seemed a futuristic, impossible dream, but here we are.  We can connect with people all over the world in a matter of seconds, fly across the globe in half a day, open a "marauder's map" of sorts and see where we are in this vast, yet small world.  Before visiting a new place, I can walk the streets virtually before ever touching down in the city.  I can ask my phone to show me the way home, tell me the temperature, call my mom, text my husband or find the answer to any (and I mean ANY) question and she will try and most often succeed.  (I just called my phone "she!")  If I lose my coveted phone, my computer can find it for me.  We are living in the Jetson's world.  Better yet, we're living in early Star Trek world. Minus warp speed and medical tricorder.  Come to think of it, the MRI is a tricorder of sorts, but not handheld; not yet anyway.

The world has changed greatly for Deaf people as well.  Check out this video from DeafNation.

I have a special prayer in my heart for parents who have deaf children.  Accept who they are.  Accept that they are deaf.  Choices you make regarding choclear implants, hearing aids, and speech are of little consequence to me.  What I DO pray for you is that you will give your baby or toddler language visually, and that you'll be willing to do the hard thing by learning an entirely new way of communicating with him or her.  I pray that they would never feel like you see them as "less" or "imperfect" until they reach a level of oralism that pleases you.  If you're always hoping for them to be more "hearing," they will feel it. They'll know it.  No matter how skilled they become orally or hearing with aides, they will always be deaf.  Accept them where they are and run with their abilities!  Give them ASL, give them hearing aids, send them to speech training, but give them visual language first so that they have that foundation on which to build whatever else it is you dream together.  Be inspired by this film and by all of the Deaf role models out there.  May this be the best year for your entire family.

For more inspiration:
The Pearls at The M Projects
Deaf Mom Shares Her World with lots of links for parents with Deaf/HH kids.
Through Deaf Eyes, a PBS Documentary that can be rented or viewed on Netflix streaming.

If you know more inspiring links, please share!