A family that has a beautiful and very new infant son born a profound hearing loss has recently contacted us after reading our blog here. Their account of their journey thus far is here:
http://turnonmyears.blogspot.com/Reading their story triggered a memory of reading a post a while back on the Listen-Up group about research regarding sign language for infant implant candidates. It is a pretty interesting way of seeing things:
I have heard Mary Koch speak several times and she is truly a pioneer. I have an enormous amount of respect for her. She rubs both the oral folks and the ASL folks the wrong way sometimes. But she knows her stuff! And she is saying something very new and very important and something that no one else is saying yet. And I think she has some really important insights that her very diverse background allows her to have.
I think what gets lost in the professional arguments about what she is saying is three things 1. the fact that language, communication and cognition need to be more important than communication mode. 2. You need to work with what you have at the time - if you have an implant, work on auditory - give the child the benefit of what the technology can do. Before the implant, work on auditory to prepare for the implant but work on sign to provide language, communication and cognition/understanding. If a two year old who has been deaf since birth has language and understanding of the world, then when they get an implant, you aren't starting from scratch. For example: a baby who understands and maybe uses the sign for "more" or "big" or "mine" will be able to simply switch modes to hearing the speech for those concepts. Compare this to starting from scratch with a 2 year old with an implant who doesn't know any of these concepts, you are having to build the auditory brain pathways plus the language plus the understanding of the concept. If you have a child who already has language and cognition you are only having to build the auditory stuff and therefore you can make much better progress. 3. And also that you need to follow the lead of the child. Some kids are going to be visual communicators and some will be oral communicators and as parents we need to figure that out, either by trying one and switching to the other or by trying both and seeing which one the child does best with. And to try to optimize whatever technology you are using, whether aids or implants. 4. The last and maybe first most important thing she emphasizes is 12 months growth in 12 months time. And if you are starting from behind, doing what it takes to get more than 12 months growth in 12 months time. These are VERY HIGH expectations.
I think it is important to note that Mary is NOT advocating sim-com or what is called "total communication" by most public school systems. She seems to me to be advocating more of an AV/ASL route which is different - VERY different. She is truly advocating a new paradigm or a new way of thinking about the oralist/signing conflict.
For example, she demonstrates what she calls the "auditory sandwich." It is a method she would use with a baby/young child who knew sign language and then got an implant. It is something she does while using an auditory verbal (AV) approach with a child who has an implant or aids. She would say the word, then sign it or show a picture and sign it and then say the word again. So the first and last things given to the child were auditory - so that would emphasize the auditory. But it would draw on the child's already built language and cognitive skills for instant understanding. Because the technology at this point in history truly gives the child access to the auditory modality. And if you want to build the brains auditory pathways you have to emphasize the auditory.
I think traditionally there have been three basic camps - oral/AV, ASL and "total communication/simcom." (ASL often gets lumped together with total communication/simcom because they both use "sign language" but in reality they are quite different) She is advocating a unique blending of ORAL/AV and ASL that is NOT the same as "total communication/simcom." For years ORAL and ASL were seen as two opposite ends of a spectrum or as mutually exclusive - pick one or the other. She is weaving AV and ASL together in a unique way. And she has a very well constructed model and understanding of both modalities and truly has something very NEW to say to ALL of us. And from the outcomes she is seeing, it has a lot more to offer our kids!
Here is a
slide presentation by Mary Koch about this subject.
Here is the
transcript that went with the presentation.
I guess reading about a child discovered so young with hearing loss made me think about what I might have done had I known all along that Lily was mostly deaf. I know I would still have pursued an implant for her. I started Baby Signs with Lily when she was around 7 months old just as I had done with Charlotte (of course, I assumed she was hearing like Charlotte). Charlotte made her first sign at 10 months for "milk". Lily made her first sign sometime after her first birthday and it was for "more" . Charlotte had about 60 signs at the height of her signing days and was stringing along 4 or so signs to tell little stories when she was about 17 months old. All of the signs (which were either actual ASL signs, Baby Signs, or several made-up ones) that Charlotte used gradually faded away by the time she was speaking in sentences. It happened without me noticing really. With Lily, it seemed that she did not take to signing as quickly as Charlotte did, although I imagine that with Charlotte having the auditory reinforcement of the words being spoken and signed to her that she caught on all the more quickly. Lily did eventually catch on though and probably had about 20 signs by this past May at 23 months, before we found out about her hearing loss and before we were encouraged to discontinue with the signs. I do not know for sure if this helped her with language acquisition or not but it makes sense to me that it is likely.
On an unrelated note, I can't believe that it is December 1st and we have not heard from the UF implant team. I was sure we would know by now. We did receive an email from a woman who received a cochlear implant in Tampa and her surgeon was Dr. Bartels of the
Tampa Bay Hearing and Balance Center. His clinic offers all three brands of cochlear implants, rather than the one offered by UF. I can't even think about having to choose which brand of cochlear implant to go with. I just want a clinic to say that Lily is a candidate. After this long process of testing and getting all the right material together, this wait to hear from UF is starting to feel like we are waiting to hear if we have been accepted to our first choice college.
Oh, and I also corresponded this week with a mom with an 8 year old daughter with LVAS and a cochlear implant. As a 2-4 year old, her daughter had many behaviors that were similar to Lilys: night-waking, *extreme* tantrums, intense clinginess, obsessive pickiness. She says her daughter is now a joy to parent- I find a little comfort in that. What made things easier for her were preschool, adding some sign language, and doing some
cued speech. These are suggestions that will take some thinking on. We are planning to be a homeschooling family but I am willing to consider preschool if it is something that Lily would really benefit from. I just don't think that there would be the type of program that I would like to see for her here. There is no school for the deaf unless you go to Jacksonville, or Orlando, or Tampa. There is a public school here that is the magnet school for kids with hearing loss but I have not heard many good things about the program. I will have to check it out for myself. The other suggestions, signing and cued speech, I guess I am open to them. I want to AV therapy some more time though. I have a few concerns about AV therapy. I worry that trying to listen all the time is just tiring for Lily. Here is an adult with LVAS and
his take on Auditory Verbal therapy. I'm not sure what I think anymore about what is the right path for Lily. I thought I knew that it was strictly AV therapy but as time goes on, I see how frustrated she is becoming.
-K
