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].

20 comments:

  1. I have been so blessed by finding your blog. We will, Lord willing, travel to China this summer to bring home our young son, who also happens to be deaf. We are so excited to see him and squeeze him in person. I especailly enjoyed your most recent post as my son also has an "ear deformity". I appreciate the way in which you explain things and I'm sure I'll draw upon your wisdon in the future. You and your family are a blessing to me and mine....thanks for sharing your family with us!

    ReplyDelete
  2. Thanks, Amy! So exciting about your son! I'd love to hear more about him if you ever want to message me. mail(at)thebrownfamily(dot)com

    ReplyDelete
  3. Wonderful post. I pray your experiences and knowledge will help many other families! I enjoy learning more as well! You'd be proud of me...I got brave and introduced myself to a deaf woman who has been attending our church for awhile. There are two ladies who have been acting as interpreters for the service--I'm not sure of the situation, but at least one of the interpreters is a member of our church; it sounded as if she "dusted off" her signing abilities after not using them for awhile. :-) We don't typically attend the same service as these women, but it's nice to know that I have a reasonable ability to communicate a few things! I hope for more opportunities to chat!

    ReplyDelete
    Replies
    1. I AM proud!! I'm glad you chatted with her. And that you remember after these years.

      Delete
  4. LOVE this post! I have to say AMEN!!!!! you and I share the same philosophy! SIGN SIGN SIGN I am gonna SIGN!!! Our Luke (who was adopted just 1 year ago and is profoundly Deaf) had no language or education when we met him and now he is flourishing with ASL. Keep on signing. I would love to get in touch one day with you. We are right now working on our second adoption of an 8 year old that is profoundly Deaf. Love following your story and watching the boys blossom!!! Hope to get in touch.
    Tracy

    ReplyDelete
    Replies
    1. Certainly! I love to connect with others adopting Deaf kids. :) Sounds like we have a lot in common.

      Delete
    2. Hi Tracy and Sarah (2 for 1 apparently this morning). Sarah, found your blog through a friend's FB post... Deaf/hearing marriage, 2 deaf and 2 hearing kids, 2 adopted 2 biological... we have a lot in common and I would love to connect. No clue how to find your email in this blog though (only my 2nd blog reading ever - little behind the blog times). Just hoping to expand my family repertoires of families like ours. :)

      Yikes - clueless as to say what type of profile I am to post this... I did send an email to follow your blog.

      Delete
  5. I am SOOO enjoying your blog and videos of your kiddos. My deaf granddaughter LOVES to watch them. She thinks they are adorable. She is nearly 10. I have e-mailed you our circumstances. You will be shocked. She has implants. It is hard for me to remember to sign. I learned SEE not ASL and my brain doesn't receive ASL well. BUT my hearing children signed before they talked and they were very articulate when they did start talking. Signing is wonderful.

    ReplyDelete
    Replies
    1. I'm catching up on emails right now. I look forward to your message. :)

      Delete
  6. I found your blog through youtube and I am so happy I found this GOLD MINE! I am hearing and work as a sign language interpreter and high school ASL teacher, and I face these types of questions every day. I love your response and attitude. I wish more parents of Deaf children were more like you! Keep spreading your message. I will be showing my class! THANK YOU!

    ReplyDelete
  7. Thanks! That's kind of you! I'm glad you can use anything I have posted here.

    ReplyDelete
  8. Like many others I found your blog from the adorable videos of the boys on Youtube :-) I am glad you've shared so many and hope to see even more as they grow! I *love* your blog and will be back often. My husband (who is Deaf) and I don't have children yet but when we do our children will be raised with ASL from moment one...I've loved going through the blog archives & reading about your journey.

    ReplyDelete
  9. As a sign interpreter I often wish that doctors would develop a network of deaf individuals and deaf advocates to refer paren upon a hearing loss diagnosis give the parents access to full information to make a more informed choice for their child. It astounds me that in 2012 medical professions still see deafness as something that "needs to be fixed". Will never forget tetping for the deaf mother the results of her baby's ABR. When the doctor said your baby is profoundly deaf, i will refer you to Dr. Soandso for a cochlear implanyt consult. I knew mom's reaction as soon as i heard the words and once i terped the comment, she did not disappoint!

    ReplyDelete
  10. Just found your blog. Great post and I loved the video. I so agree about teaching sign no matter what. I've read lots of the research and I just don't agree with the idea that you have to focus exclusively on speech/hearing. I became deaf in one ear at the age of 29. Although I've gotten better and better at coping with it, it is just more frustrating to function in society with hearing in only one ear (espeically when it happens as an adult and you brain has developed to take integrate sound from both ears). I miss so much, especially conversation in settings with background noise. And I can't localize sound at all! My brain is just wired to do that with input from 2 ears. I think signing would be a huge benefit for anyone who has unilateral hearing. Good for you for doing both! If I could sign I would love to do social things with people who sign so I could stop using so much energy on trying to decipher the conversations that I am only catching bits and pieces of because of the background noise or position of the speaker.

    ReplyDelete
  11. Your children are lucky to have such wonderful parents who can see them for the beauty they are and all the gifts they have to offer.Not as a project to be fixed. They are lucky to have parents who stand up for the best for them.

    ReplyDelete
  12. came across your blog when i googled, 'down syndrome deaf.' we have a little one who has Ds, and referred on her first screen. she also shows no signs of being able to hear. we used the lots of sign with our first daughter to give her a voice before she could speak, and are trying to learn more now as we attempt to sign as much as we can to our youngest. we are getting ready for our second/follow up hearing screen so we will go from there on any decisions.
    i appreciated your post a whole bunch for thoughts on how to deal with all the options that will be thrown at us. :)

    p.s. both our girlies are adopted as well. we're pretty fond of the way God grew our family.

    andrea

    ReplyDelete
  13. I have to disagree with the idea that providing amplification means that a person does not accept their child as deaf. My daughter has two cochlear implants, not because we wanted to "fix “ her, but because we wanted to open the door to spoken language to her. You appear to think that language development can only happen through ASL. That simply isn't true. You say that time spent with audiologists is “wasted “ and that those who chose spoken language are focused on listening, not language, and again, that couldn't be further from the truth. ASL advocates and those who choose spoken language fundamentally are after the same thing, early access to fluent language, they just disagree about how to get it.

    ReplyDelete
    Replies
    1. It appears you didn't read my entry entirely or completely. I didn't say *any* of the things you stated/quoted me as saying. The only time I mentioned wasting time was in regards to an ear reconstruction surgery for my son who hears very well, even in that closed ear.
      I totally support parents choosing amplification and speech training. We ourselves have our boys working with speech therapists every week and plan to try out hearing aids on our older child.
      If you'd read my blog entry, you'll see that the way I see to get to fluent language is a combination of signing, amplification where beneficial, and a reasonable amount of speech training. I've never advocated for ONLY one or the other.

      Delete
  14. Thank you SO MUCH for this. I have been so concerned about the division there seems to be between hearing and Deaf cultures... cochlear implant vs ASL, etc etc. It seems black and white, as if there's a RIGHT and a WRONG, like you have to choose between rejecting hearing and choosing ASL or rejecting ASL in order to have any hearing... but it's a case by case basis and you choose what's best for the Deaf person! The best option can (and it looks like SHOULD) be a combination of all the options! That video was SO helpful, too. I feel so much better having read this!

    ReplyDelete
  15. I have really enjoyed reading your posts & I know this post is 3 years old, but I have been searching for blogs by deaf homeschoolers, as I homeschool my older kids & would like to homeschool my HOH. Would love to hear more about your adventures with your deaf & HH sons. I also have a son with microtia/atresia of the right ear. He was born this way & people we meet often ask us the same questions. Anyway, I was wondering if you have tried a bone aided hearing aid for Tian? Our son has one and also has a hearing loss in his left ear, so a hearing aid there as well, but with both he seems to hear as normally as possible. Also wanted to suggest checking out EarCommunity.com if you haven't, as they have so much info and support groups for M/A. Thanks for your awesome posts.

    ReplyDelete