DorrieDorrie

AEHI9

A few weeks ago, I attended the AEHI Inaugural Professional Development Seminar in Chicago. Mom had heard about it from a mailing list, and the agenda seemed like it would have a lot of useful information for us in terms of making decisions about Dorrie’s education. The seminar primarily focused on auditory neuropathy, cochlear implants and Cued Speech, all of which we felt would be relevant topics for us to know more about.

The seminar proper began on Saturday, but there were some activities planned for Friday as well. First, they had an open house at Alexander Graham Bell Montessori School, but unfortunately we could not arrange my travel so I could arrive early enough to join it. However, we made sure I would arrive in time for the other activity: a mini-workshop on Cued Speech. I knew very little about Cued Speech before arriving — basically what I inferred from its name and what was written into the seminar materials. What I learned is that it is a system that was designed primarily to make normal spoken language accessible to deaf and hard of hearing people by disambiguating sounds used in the language that look the same when doing regular speech reading (a.k.a. lip reading), with a goal of giving them the opportunity to learn written English on a level playing field with normally hearing people. (The connection between learning spoken English and learning written English, as I learned from the seminar, is perfectly logical and fairly intuitive, but also rather long to explain, so I’m not going to go into it here.) Cued Speech uses different hand signs and positions around the speaker’s mouth to indicate different consonant and vowel sounds, and it is relatively easy to learn: for English at least, there are only eight hand shapes and four hand positions (which sometimes include a small gesture). We were able to cover all of the shapes and positions during the four hours of the workshop, so technically, I can now say that I know cued speech — although in reality, it would take a lot of practice to fully memorize each of the shapes and positions (I only have about half actually committed to memory so far) and be able to read and perform them proficiently. Still, I have learned everything I need to learn — the rest is just practice.

Cochlear implants are something that we thought about for Dorrie some time ago, but have not really been pursuing recently. From what I learned, I think they could be quite helpful for her — according to the presentation by Dr. Charles Berlin, who is pretty much the expert on auditory neuropathy, cochlear implants are the most promising treatment for AN — although it will take some testing to find out if they would actually work for her or not. If they would be effective, it would not give her normal hearing by a long shot, but it would give her some hearing, which would still be a huge improvement.

The main event, at least for us, was the presentation by Dr. Berlin. The primary audience the seminar was intended for was deaf services professionals and medical professionals, but parents of deaf or hard of hearing children were also invited, and Dr. Berlin did a good job of presenting information that we could understand as well as information directed more toward the professionals. Among other things, he was able to give us a demonstration of what a person with auditory neuropathy actually hears (it is available on the web at http://kresgelab.com/Resources/AN_simulation.wma for anyone curious), and how it can affect speech and listening. I also learned that there are varying degrees of AN, and that in some cases people may not even realize they have it. Also, the term “neuropathy” may be incorrect — according to what I learned, it is not a central processing disorder, and it does not even necessarily imply issues with the nerves in the ear at all. But one of the crucial points Dr. Berlin wanted to make was that there is a lot they still do not know about treating AN, and that while there are treatments that are very promising, like cochlear implants, and while communication methods like Cued Speech have been shown to improve the outcomes of children with AN, they still cannot give many definitive answers.

Overall, I came away with a lot of things for us to discuss with the team of professionals we have working with us and with Dorrie. I feel that Cued Speech in particular seems promising, because we know Dorrie can be very attentive to people around her — and particularly their faces — and it is something that both Mom and I would be able to learn with much less difficulty than ASL. (Obviously, Dorrie is not going to be able to use Cued Speech herself, but there is no reason she could not learn to recognize it.) Cochlear implants may also be promising, although it will probably take some testing first (or at least reviewing her tests from earlier) to determine if they might be effective for her or not. In any case, we now know far more about what is happening with Dorrie’s hearing and what more we could be doing for her, which will be very valuable as we move forward and she continues in school.

Posted by dad, under moving forward... or not, our little witch