On the Topic of ASL

I was going to write about how yesterday’s Early Intervention meeting went, but that can wait for another day or two.

A commenter named Suzanna left a thoughtful message on my last big update and as I was thinking about I was going to respond to it, it seemed that the content of that response might be worth its own post because it’s a big piece of our early strategy and goals for Alex, so here goes.

Our overriding objective for Alex is to give him every opportunity in life possible. To us, that includes doing everything we can to help Alex overcome his disability. Yes, we look at his deafness as a disability. We live in a hearing world and there are obvious detriments to living in that world without the ability to hear. We worry about him not being able to hear danger closing in. We worry about him not being able to communicate with hearing people as easily as possible. We worry about him being at a statistical disadvantage when looking for employment (even though 20 years from now this might not be an issue). We want him to be able to appreciate music. To us, each of those things represents opportunities that, at the very least, become more difficult as a person who can’t hear. That isn’t to say that the deaf community should be pitied or that they need to be fixed. But at the end of the day, if modern technology / therapy gives us the ability to grant Alex any opportunity to hear, we’re going to take it for him, not because we want him to be “normal” and without regard to contributing to perceived ethnocide (yes, it gets that intense). With his level of hearing loss, this basically means very powerful hearing aids that would have limited functionality, cochlear implants, or auditory brainstem implants. I’ve written this before, but if I’m fixating on technology and implants, it’s because those basically represent what Shannon and I think are the best gateway to opening those opportunities up for Alex.

We’ve spent hours upon hours researching from many different angles. Our research has shown us how successful kids can be with these implants, the relatively low dangers associated with what’s an outpatient and NON-BRAIN surgical procedures, and we know what the many challenges and limitations are going to be. Most importantly, a very well-known aspect of developing a brain geared toward using hearing is that that hearing must be present and exercised within the first three years of a child’s life – the earlier, the better.  Knowing that, we are absolutely of the “TIME IS OF THE ESSENCE!” mentality.

So – this post is about ASL, but I wanted to give that above background to explain why we’re not going on about ASL quite as much. Primarily, it’s because ASL isn’t much of a variable for us. We plan on using it with Alex and learning ourselves.  To what extent is dependent on Alex’s needs and his therapy. Our objective for Alex at this point is to have him use speech primarily IF it’s possible (i.e., he takes to the implants well and therapy results are obvious). There are various schools of thought regarding the usage of ASL if attempting to teach speech as the primary mechanism of communication. One side believes that it hinders speech, the other doesn’t. I haven’t found anything decisive, but I do know this – in the sunniest of scenarios, if Alex gets his implants and does well with them, they still won’t be on all the time, and it’s unacceptable to us that he’ll simply be out of luck during those points. If nothing else, we (and the family) are going to make sure we know some of the basic signs. I’d like us all to know as much as possible without hindering Alex’s speech / hearing development, however.

So if I don’t talk about ASL that much, it’s for a few reasons.

  1. Barring Alex’s eligibility for cochlear implants, it’s simply not our first choice for Alex’s primary means of communication.
  2. We’re planning on learning ASL regardless, though only to the extent that it doesn’t interfere with his speech development. We’re still learning about how that works, but unbiased literature on this is relatively sparse
  3. I’m a technogeek and am still amazed at what these implants are accomplishing in the real world, and my true belief is that if Alex does well with the implants NOW, when it’s key, then his disability will present less and less barriers to opportunities as the technology improves. He only needs to get his foot into the door now and enjoy the advances (obviously assuming he wants to!).
  4. If it becomes evident that Alex isn’t doing as well with the implants or can’t get them in the first place, we will immediately switch to ASL. It is absolutely NOT off the table or something we’re trying to avoid.
  5. The chance that Alex won’t be able to take advantage of ASL is far lower than the chance that he won’t be able to go the oral route, so that’s more of a concern that’s on our minds.

A little story: one of the first things Shannon and I did when we learned of Alex’s hearing loss was to discuss how important it was to us that the family be able to communicate with one another and to jump on that early, so we added a few signs to our repertoire (Taylor learned some signs at daycare, so we already knew a few).  They included “dad,” “mom,” “sister,” “brother,” “please,” “more,” “food,” and “enough.” Though we’ve admittedly slipped on this in the past few weeks, we have been showing those signs to Alex where appropriate and working on them with Taylor (“Can you say ‘please’ with your hands, Taylor?”).

Honestly, as I write this, I’m excited to learn ASL. I love learning new stuff, and deafness will always be a part of my son’s life, even if the medical suddenly developed a shot to give him his biological hearing back next week. Though I don’t want him to be limited to only ASL when the vast majority of us don’t use it and don’t value it enough to get in the way of getting him his best chance of access to speech, I still want him to have that link, and I want us to have it, too.

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4 thoughts on “On the Topic of ASL

  1. I think these are great points! And I think a great way to approach the situation.

    I was born legally blind and though I can see and read and type, and function mostly on my own. I cannot drive and I can see MUCH less than an average person. My eyesight is something that is correctable, but in such a small way it is not worth the headaches (literally) that come with the correction. Many people pushed my parents to teach me braille and plan to send me to school for the blind, but my parents wanted me to have as much opportunity as possible. They sent me to mainstream school and we had an IDP that helped me with the things I needed. I am SOOOO grateful my parents made those decisions for me. I am sure they second guessed themselves and that many people questioned them. But I know I am better off with them pushing me to b e an overachiever rather than coddle me and keep me on a safe and easy path.

    Every situation is different, but I look at the general population of low vision blind people and I am so glad that my parents taught me that I had something that would give me more struggles than most, but that I could overcome it with hard work and determination. Alex is very lucky to have such strong and dedicated parents!

    P.S. I read Shannon’s blog and that is why I am reading this! Thanks for sharing.

    • Thanks for the note, Kalyn – I’m really hoping that the route I outlined above is going to be one that Alex thanks us for putting him on. Honestly, it’s almost a no-brainer for us. We either choose to give him opportunities or we don’t. Now, of course it isn’t that simple, because there’s LOTS of work involved, LOTS of appointments, and let’s not forget about a surgery, but still. In the big picture of his life, they almost seem like fleeting inconveniences that could be long-since forgotten before he hits high school.

      Anyhow – thanks for sharing your story, it’s nice to read that from the perspective of someone who lived it. I hope Alex feels the same if we opt for surgery / oral training.

  2. I can’t imagine how it is to have such information overload at this point, and I applaud that you are doing so much of it. I would really encourage your family to jump in deep with the ASL right now – it is perfect timing with your daughters age as well. From what I’ve read, hearing children who learn ASL as babies actually do better in later years because they have had a jump start on a kinetic language base. I keep reading that ASL in early years does not limit language later. No matter what technologies he is able to have later, it just seems to me that ASL would be nothing but a help and becoming familiar with it now would be fun!

    I’m biased though – I am in the process of relearning sign language and starting studies in a sign language interpreter program.

    I bought my niece a sign language for babies book for her and I hope she uses it for her. I regret not getting the one that was a kit with flash cards tho – I can imagine it being easier to work with a hand full of flash cards than keeping a book open. I also recently saw that a popular show called “signing time” is now on Netflix.

    In any case – I am enjoying reading your journey and wish you the best. ~ Kate

    • Hi Kate – the only reason we’re holding off now is because we’ve been told by the oral school that kids who have an ASL base lean on it, sometimes at the expense of their oral progress. They didn’t paint ASL in any sort of negative light and specified that it was up to us. Really, I think we’re sitting on it for the moment. I WANT to get going on ASL and we know we’re going to do it, just gotta figure out the timing and exposure. Great point about “Signing Time.” The thought has occurred to me that even if we hold off for Alex, then Shannon, Taylor and myself can still start picking it up.

      We’re absolutely doing it, though, and doing it as early as possible.

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