When we moved to this city block last October I debated whether or not to get a deaf kid sign. I kind of decided against it. For one, I didn't think it would make any difference. People would speed regardless. For another, we've taught Ellis basic street safety. He's a cautious kid and takes pretty good care of himself. Besides, I'm usually with him when he's out front. I figured a deaf kid sign was sort of moot.

We're getting a new block captain, though. The old one is just that: old, and infirm. Our block has degraded some over the years, so I'm told. The woman who is taking over grew up on the block and has recently moved back. She's been really proactive about improving some things around here (and believe me, plenty needs improving). She took the initiative to get me an application for a deaf kid sign and she turned it in. She seemed to think it would make a difference. So we got the sign.

Ellis has been really into street signs lately and knowing what they all mean. He is pretty excited that there's a street sign just for him.

This post has two parts.

Part the First: wherein encounters with the public library lead to benefits beyond my wildest dreams.

I am attempting to renew our overdue relationship with the public library. (heh, heh.) The public library and I have a rocky relationship that is based on fines. When we moved to this house last fall we changed counties from the 'burbs to the city. About a month ago I finally got a library card for the Free Library of Philadelphia. This is what our public library is called, because Ben Franklin invented it and back then what made it distinctive was that it was free. (Except I can't remember if that meant Free, as in no charge, or free, as in anyone can use it, or something else, but "free" is the operative word) (Except in my case, where it should be called Fine Library of Philadelphia--in my defense, though, I'm not doing too badly. under $10 over the month.)

Since it is for the sake of the children that I subject myself to this torturous remembrance of immanent due dates, we've mostly emerged from our local branch carrying piles of kids books and DVDs. And they're really enjoying that. Did you know that Scholastic has recorded tons of books onto DVD? So that means that it's like Not-as-bad TV time, because they're sorting of reading a book, too. See, smart parenting right there. (/sarcastic)

But a few days ago I was browsing around the Free library website looking for something to put on hold for me, since browsing in a library with little ones in tow is basically a non-option. I came across their online databases.

I have access to Oxford Music Online--including Grove Music!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I have been without any access, save for Google, these past years, and it is like coming across an oasis in the desert. I'm giddy, my step is a little lighter, and I can stand a little taller. I have Access. The hallowed gates to academic research are now open to, yea, even this Non-affiliated Mother of Toddlers.

Part the Second: wherein Access affords interesting discoveries.

The other big thing happening for me right now is that I'm applying to grad school again. Right now I'm in the throes of GRE prep. *groan* But soon I'll be writing essays and whatnot to get my applications together by December.

One of the things I've been doing in order to focus myself to write these eventual essays is articulate exactly which avenues of research I'm really interested. My main area is, of course, late medieval/early Ren. music history, and my main work will probably be done in that area. But there's a lot of interesting things happening in scholarship that can open up different kinds of questions.

The world of Deaf is now an inextricable part of my life, thanks to my son. Before Ellis was born, I didn't know anything about deafness or deaf people. Now, though sometimes it feels like deafness is this little insular minority, it also feels like I see it everywhere now. I never bumped into Deaf people before I had Ellis, now we do all the time. I say this a little jokingly, because I very well may have before, but because we weren't attuned to signing and deafness, we may never have know. Now, if we're signing or see someone else signing, it's a lot easier to make that connection.

I'm rambling a little, but I guess I'm asking the question, what if I put on the eyeglass of deaf and then looked at teh world of music history? how would I understand the music experience of deaf people? Where would that take me?

First, there's Beethoven. What did he have to say about being deaf? There's obviously the Heiligenstadt Testament.

...thus it has been during the past year which I spent in the country, commanded by my intelligent physician to spare my hearing as much as possible, in this almost meeting my natural disposition, although I sometimes ran counter to it yielding to my inclination for society, but what a humiliation when one stood beside me and heard a flute in the distance and I heard nothing, or someone heard the shepherd singing and again I heard nothing, such incidents brought me to the verge of despair, but little more and I would have put an end to my life - only art it was that withheld me, ah it seemed impossible to leave the world until I had produced all that I felt called upon me to produce...

I am sure there is stuff out there on Beethoven and deafness.

Then, there is also Deaf people who make music. I will certainly explore that.

But then, when I plugged deaf into Grove Music I found something I wasn't even looking for.

Contemporary German composer Helmut Oehring (b. 1961) was born the hearing child of deaf parents. His first language in the home was sign language. (I'm presuming German sign language.) He incorporates deafness and signing into his compositions.

Oehring's compositions derive from the complex physical and facial expressions of sign language, which he notates as music. His works outline bleak narratives that address the chasm between individuals and the futility of communication. His early compositions are concerned with stages of agony and human actions that lead to death; in later works, speech as a symbol of the impossibility of human discourse becomes the central musical subject. Much of his work can be considered social criticism. Several compositions include deaf people among the performers.
(Gisela Nauck. "Oehring, Helmut." Grove Music Online. Oxford Music Online. 11 Aug. 2010 .)

He uses deaf people signing as soloists in some of his works. Look at the instrumentation for a couple of his pieces:
* Wrong (Schaukeln-Essen-Saft) (B. Sellin, Oehring), deaf person, ob, b tpt/trbn, vn/va, elec gui, perc, live elec, 1993–5;
* Self-Liberator (Oehring, R. Taumel), 2 deaf people, tpt, ens, 1994
* ER.eine.She, 1v + b fl, 3 deaf soloists, vc, installations, elecs, 2002

I'm wondering, do the soloists themselves have to be deaf? or just sign? (I'm inclined to think the former.)

I tried to find a good YouTube clip. This is the best I could find, a sampler of his works. Skip ahead to 5'10" to find the piece with the deaf soloist.

I don't really know what she is saying. German Sign Language? and the highly stylized signing for the context?
I find the staging to be really striking. Distinct contrasts between light and dark. Her face and hands stand out against the dark background, no doubt to ensure that they are clearly seen.

Anyway, can you tell I'm totally fascinated by this? Guess I'll have to reacquaint myself with the German language again.

Today Chris and I were on our first parent panel. We were asked to come to a regional meeting that the State Dept of Ed sponsors for those who are service providers for children with hearing loss. There were people in the room from all over eastern Pennsylvania. Also on the panel was another mother of a kid from PSD; her daughter was in E's class last year. And a mother whose kid was in an oral program. All three kids represented are going into Kindergarten next year. It was a good experience. I hope we were able to be helpful.

I thought I would list the questions and the answers that we prepared. We didn't really follow them as a script, but it was helpful to write out something to organize our thoughts. And also, the usual caveats...this is what is good for our family, but I think there are some general thoughts that anyone going down any deaf educational path could find some benefit from.

1. Please share how the news of your child’s diagnosis was shared with you and what information and resources were given to you at the time of diagnosis.

We came to understanding of Ellis's diagnosis gradually. It took us awhile to understand what the "referred" meant after he failed his newborn hearing screen. We had an appointment with an audiologist at Temple Children's that was not helpful at all when E was 2 months. When E had a "no response" on his ABR, he said that didn't tell him how much hearing loss that he had. This audiologist only told us that E had "some hearing loss" and gave us an Early Intervention number to call for our county. It wasn't until E was around 7 months old and we transferred to CHOP did we get a clear diagnosis of profound sensorineural bilateral hearing loss. And we were already happily enrolled in an EI program. The audiologist at CHOP introduced us to hearing aids and was the first to suggest that he may be a candidate for a cochlear implant.

2. Describe your and your family’s feelings at the time of diagnosis and what type of support (if any) that you found helpful during this time.

I think it did help that we came to a gradual understanding of his hearing loss. We had no defining, black-and-white moments where a diagnosis was handed to us, the unsuspecting parents. But overall we were actually very calm and accepting. To us it didn't seem like a tragedy. All we saw was a healthy, happy baby, and walking through a children's hospital where babies are fighting for their lives really puts things into perspective. I think the Early Intervention support we received from PSD was the most helpful. Our home visitor became a vital part of our life those first couple of years, and we still keep in touch with her.

3. How was the Communication Opportunities shared with you and your family? Do you believe that all options were equally available to you and presented to you in an unbiased manner?

I do believe we were presented with all the options in a very fair way. When I first made the call to Montgomery County's Early Intervention, I was asked whether or not I wanted to sign. At the time, I didn't know not-signing was an option. I just assumed that all deaf people signed. We all remember Linda from Sesame Street, right? When presented with the question, I did ask for some clarification, and the woman gave me brief descriptions of the programs at Clarke and at PSD. I remember jotting down in my notes that she seemed to be nudging me towards Clarke. But still by the end of that conversation I couldn't fathom a reality of not-signing.

When we began our Early Intervention with a teacher of the deaf from PSD, one of the first things she did was to make sure we truly understood all our options. We had a tour of Clarke [oral school], of PSD. She gave us things to read. We really felt like we could ask her anything and make any decision we felt comfortable making.

4. When and how did you come to a decision of what communication option(s) you were going to use and do you believe you had access to qualified professionals in your choice of communication?

From the first day when hearing loss was even brought to the table, our commitment to Ellis has been that he have as much access to everything that might help him. We learned that if he is to have 100% access, that ASL must be available to him, and that he must continue to learn it as well as we would expect a hearing kid to speak. But we also want to give him the benefit of a cochlear implant. His right ear was implanted when he was 2yo and speech therapy and a high auditory access classroom at PSD are part of his IEP, in addition to instruction in ASL. In order to be truly bilingual, he must be allowed to develop to the maximum of his potential in BOTH languages. So that he may easily choose how he moves through his adult life. For us, we felt like we were limiting his life choices if we chose only one mode of communication. In our house, learning another language is par for the course, and ASL is no different.

I do think we were given excellent resources and opportunities. The Mont Co EI and then preschool division bent over backwards to make sure we had just the IFSP/IEP we needed for our bilingual approach. Even though it was a little outside the box for them. PSD also offered us a lot of extra opportunities that weren't "on the books," such as a Deaf Mentor program and the shared reading Program, where a Deaf adult would come into our home and help us learn how to read children's books to Ellis in ASL.

5. As parents of children who are deaf or hard of hearing, we need to learn quickly how to embed language learning into our home environments. What tools/skills did you and your family learn during the early intervention years to support your child’s language learning at home and in their community?

ASL was crucial. Ellis didn't get a CI until he was 2yo. Before then the hearing aid he had didn't give him an language benefit. If we hadn't signed, he would've had no access to language in those crucial 2 years. Because of signing, we have seamless communication if the technology fails. There was actually a time when the processor on his CI and his backup CI both failed simultaneously. It was crazy and it took a long time to figure out. And then they have extra time getting a replacement with a processor, because it has to be programmed.

It's great to have more than one modality for language if technology fails. There is always language, be it ASL or spoken English. We never lose. It's always win. Language is the goal.

6. Please share with us any advise you believe would be helpful to another family who will be on this journey after you.

Another mother brought up the good point, that it's up to the parent to be an expert in everything at the IEP meeting. To really understand what's going on so as to be a good advocate for the child. And then I thought one step further, it's great to do this for the sake of your child. And hopefully it will show them how they can gradually take ownership of their own advocacy, so that they can stand up for what they need.

But we brought to the table to answer this question was this: Talk to Deaf adults. They're lovely people, and they want to tell you that being Deaf doesn't limit them from doing the things they want to do. They want to show that being deaf isn't scary. No matter which mode of communication of avenue of education you choose, there will always be deaf adults on the other side. Talk to them. They will give you a more wholistic picture of your child than just the speech banana your audiologist gives.

In a week, Ellis will begin his first experience having a personal ASL interpreter in a hearing setting. He will just barely five years old. He has been in great situations thus far. At school, he has full access to communication, because he goes to a Deaf school. At home, we do our best to also provide as full access as we can. And we, his parents, bridge the gap as best we can in other situations, such as extended family or church. We have been blessed to be surrounded by so many supportive people in our families and churches, they will often reach out to Ellis as best they can, as well.

Next week, though, our (former--but we still have a lot of connections) church is hosting its annual Vacation Bible School. Five mornings with fun, games, crafts, and Bible stories, verses, and lessons. I helped out last year, so we were going, whether Ellis liked it our not. And he did not. It was a little disheartening for me to see him pulling away. But it was totally inaccessible to him. The people around him did their best to help him feel comfortable, and we were around these people all the time, it wasn't like they were strangers or anything. But from Ellis's point of view, VBS was one big FAIL. And it really highlighted for us that it was seriously time to step it up in notch in providing Ellis access at church.

Fast forward to sometime this spring, the VBS director called me and said, "We want VBS to have a Deaf outreach component. What do you think?" I was floored! Wow!! That's awesome!!! But none of us had any idea what that would look like. We found an interpreter who attends and interprets at another church in our general vicinity. She had some ideas, but she thought if this was going to be a whole outreach component, we needed a lot more time. But she agreed to interpret for Ellis. And she has been fantastic in working with all of us to figure out how this is going to work. Especially since it'll be Ellis's first time having an interpreter.

Meanwhile, we've been working with him in a lot of area. Generally, encouraging him to seek clarification when he doesn't understand something or to ask for more information about a situation. Often he'll come up and ask me "what are doing?" now. We've also been trying to explain to him what it means to interpret.

We had a situation last night, when E was particularly wiggly during church--normally he does really well. So we took the opportunity to explain about what we're doing at church. (Really, this conversation could've happened in any context) And Daddy said (signed--the whole conversation is in ASL, really), "why am I signing?" and E shrugged. And I said, "we're signing because you're deaf. You can't hear. Mommy and Daddy can LISTEN-EARS so we listen to the talking, understand, and then sign, because you LISTEN-EYES. You're deaf. When you LISTEN-EYES, then you understand!" I don't know if being so perfunctory was the right thing. But I don't see any point in skirting around the issue. We're not presenting it like deaf is a bad thing. Just being more intentional about pointing out the differences in our family. And he needs to know why he has an interpreter, I think.

I'd appreciate any thoughts you, Deaf adults have.

So why three parts? Because I had more thoughts than I had time at a time to write. And because what I wanted to say falls roughly into three points: background, what's going on now, and the obligatory abstract reflections.

Incidentally, this is Christopher writing.

I'm pretty sure we've said this stuff before. Anyway, it won't be news to anyone who follows us that biculturalism guides our thinking re Ellis, a commitment to which the name of this blog attests. But in church, the stakes are raised. We put it to our pastor this way: we want Ellis to know that the gospel is for him, regardless of his culture and language. And we want him to be able to engage the gospel in his own, native language and culture.

So there's that. And then there's the fact that being in a church means being with people. And that means more than just communication, thought it certainly does mean at least that much. What it really means is that Ellis knows he is loved by these people. Realistically, we don't expect anyone to get as good at ASL as we are (not that we're all that good). But Ellis ALREADY sees people's efforts and is responding to them.

The other day we couldn't go to prayer meeting, but Ellis wanted to go. So we sent him with someone else who was coming by. That's right, we sent E to prayer meeting by himself. And he spent the time before and after, while people were chatting, to teach people the signs he was using, starting with the alphabet.

He tells us that he wants to go to church. He talks about it during the week. And this is after only a few weeks attending. So maybe what we're feeling is vindication. We've always said that a little goes a long way, that we don't expect people to master the language but just to try, and that would be enough. And as it turns out, it's more than enough.

We know that eventually Ellis will have to learn how to function in a Hearing world that doesn't understand or won't accomodate itself to him the way we do. We know that eventually he'll be in a church where people don't make this kind of effort. But he'll be an adult by then, and settled in himself and in his relationship to the Gospel. But for now, we think this is the way we, and the Church, fulfill our vow to raise Ellis in the nurture and admonition of the Lord.

I'll be writing more on this from time to time. But in the mean time, thanks to everyone who commented on parts one and two of this. Your comments mean a lot to us. And we especially appreciate Deaf people sharing their own experiences growing up. They instruct and encourage us.

In a previous post I talked about our difficulties finding an interpreter for church, and I mentioned some of the reasons why we think it's important to have one. Let me just say: thank God for the men in our church. Here's why.

We recently changed churches. When we moved from the 'burbs to the city we were much closer to another church in the same denomination. So it seemed to make sense to make a move. We were worried about what would happen with all the work we'd done with our session, but decided to at least visit the closer church to say 'hi, we're in the neighborhood.'

Well, let me just tell you. They were all over Ellis. We soon discovered that two members of the congregation have ASL in their background. One of them helps lead the singing, and within a few Sundays of our visiting started translating the songs as she was leading the singing. The other teaches Ellis's sunday school class, and she too immediately began using ASL wherever she could.

Completely on his own, the pastor started using what few signs he could pick up during the week in his sermon. I think he must have picked up the sign for "life" when they came for dinner one night. The next Sunday he was using the sign whenever he said the word. And he's added to his vocabulary since then.

He's also started asking the whole congregation to sign "Amen" at the end of every prayer, and he's asked us whether we would teach everyone how to sign the Lord's Prayer so we can do that together, too.

And I've noticed that as I'm translating hymns and such for Ellis in the pew, people behind me are trying to follow along. And some people are even turning around to be able to see and follow.

And the session at our old Church? They contacted the new church and offered to help out with the transition. They even had several joint meetings with our family and reps from each church's session.

So, yea. Like I said. Thank God for the men in our church.

Amid all the searching and learning we've done since we discovered Ellis was deaf, the biggest issue for us, the elephant in the room, always was what to do about church.

Anyone who knows us well knows that we take church very seriously. J and my own experiences growing up in the church were typical of what we call "covenant children". We believe that our children are Christians, and ought to be treated as such, until they prove otherwise. That means that children are taught at a very young age to participate in every aspect of public and private worship.

But what about Ellis? We are used to seeing young children sitting in the pews with their families at church. We know they don't understand a lot of what is going on, but we expect they will absorb what they can, and as they grow older they'll continue to grow in their understanding. But Ellis doesn't absorb a Hearing worship service the same was as Hearing children do. Most obviously, he doesn't hear the words we're singing and reciting. And he doesn't hear the sermon.

The most obvious solution is to find an interpreter to translate the content of the service. If Ellis can't understand everything that's fine. Neither can hearing children. And that's not the point, anyway.

Fortunately, our session was very receptive to the idea of hiring an interpreter. But they had to work through a lot of issues, first. Like whether or not the interpreter themselves needed to be a Christian, and if so then what kind? (The issue of who leads worship is a huge discussion in Evangelical Christian circles). And then there were practical issues, like where the interpreter would stand so that they would be accessible to everyone, but not distracting to anyone.

And then there was the actual search. We asked everyone we knew whether they knew any interpreters, or any good sources for interpreters. We contacted agencies, we scoured the web, and we followed endless friend-of-a-friend-of-a-friend rabbit trails. Still, we just couldn't find anyone who fit the session's criteria. The problem was that any interpreter that was themselves a Christian wanted to be in their own church on Sunday! Duh.

So we kind of gave up, to tell the truth. We found a wonderful woman who was able to meet with us once a week to help us work out the difficult stuff-- like the Nicene Creed, so we could interpret those ourselves, in the pew. She also worked through the Children's Catechism, the Lord's Prayer, and the Apostle's Creed with us. Awesome. It gave us a measure of confidence we lacked before. But still. That's not enough.

The issues are much broader than mere communication. The issues here are cultural, too. But I'm going to save that for the next part of this post, soon to follow.

I guess I spoke to soon.

I made some inquiries about including ASL in Ellis's IEP evals, thinking that it had been overlooked. Or just didn't really exist. When we were preparing his 3yo transition to preschool evals, my understanding was that there were not official rubrics for evaluating ASL for an IEP (which seemed weird to me). Maybe it was my county at the time, not providing space for such a thing to exist. For some reason, I though this wasn't going to be included.

So anyway, this morning I got a note back saying that they were doing the ASL evals at the beginning of next week, and they just hadn't been included yet in the initial packet they sent home. But they'll be ready by his IEP meeting.

Hooray!! That makes me so happy!

'Tis the season for IEPs. And Ellis is getting ready to transition to kindergarten next year.

No, that is not my baby going to kindergarten!!

Part of the process is evaluations. I was pleased about many aspects of the evaluation results, especially his reading readiness. I was also pleased to read that one evaluator noted that "one should not assume that just because Ellis doesn't respond doesn't mean that he doesn't know." It shows me that the people at E's school really understand him. E sometimes takes a while to process things, and doesn't always respond the way and the timing that you'd like. I just love our school.

One thing that does bother me about the IEP process, though, is that there are many tests by which to evaluate and score Ellis's spoken English language progress, but there are no tests to evaluate his ASL progress. I want to know how he's doing! I can't evaluate his ASL. I'm not a native signer, and probably only sign two steps ahead of him. It's not the school's fault that this kind of test isn't included, but it is a fundamental flaw in the system that I think needs addressing!! So i'll probably be talking to some people this week.

This evening Ellis and I went over to school for the first ever meeting of the CI Parent Support group. The CI Coordinator and I had been talking about this last fall, so I said I'd make soup, because it was either that or, um, pizza. No offense about the pizza, but soup was better. I made a pot of chili and a pot of vegetarian Indian red lentil dal. Around six families attended.

A, the coordinator, talked some about CI statistics. In terms of educational choices, only about 2% of CI families fit in the bilingual category. I didn't realize that we are so few.

We also got a chance to talk amongst ourselves. The conversation naturally evolving from the presentation. Ellis was one of the oldest kids represented in the group. CI's are kind of a new presence at the school, and mostly in the youngest group of kids. So it was good to chat and to meet some new people.

I'm excited about the development of this group. I have gone to some of the meetings for parents of CI kids down at CHOP, but kind of have stopped going. As one family put it, they went to get information and were coming up kind of dry, as the information isn't always germane to a bi/bi family. So it's nice to find our little 2% subgroup. Ha!

(and greetings if you're coming to this blog after meeting us tonight!)