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.

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.

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.

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!

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!)

Ellis runs ahead of me in all his four-year-old boy vivacity. As I lumber along with the baby on my back, lugging our little bag full of snacks and water bottles, I watch him, waiting for the moment, just before he disappears around the corner, when he'll turn around and make eye contact. I wave him down signing WAIT FOR MOMMY! but he's already plopped down on the park bench and signs WAIT. As I get close, up he pops again, and I watch the back of his head bounce, jump, and dash along.

Cut to later. Ellis is picking up his fifteen-month-old brother. Again. He adores his brother, but sometimes his love is a bit too lavish. I kneel down, fully intending to affirm his love, but to talk with him about more appropriate ways to express it, while firmly prying his arms away from the baby, who is screaming his head off. Ellis drops to the ground, flailing and squeezing his eyes shut.

Four years ago, when we learned that our brand new baby was born profoundly deaf, we knew our experience as parents would be different. We got a kick out of being able to vacuum in the same room as a sleeping baby. We cheered at his vocabulary of ASL at such a young age. We stomped the floor to get his attention.

However, I feel like it's only been this year that I've really begun to get a glimpse at what it means for Ellis to be deaf, and deaf in our hearing family. I've started to see how he settles himself socially. Personally, I'm starting to see the particular ways I fall short as a parent. True, nobody is a perfect parent, but I'm speaking of the ways in which I struggle as a Hearing Parent of a Deaf Kid.

The primary aspect of this unique experience is communication. We are settling into the bilingual dance between spoken English and ASL. Two years ago Ellis got a CI. He's doing pretty well with it, his receptive language is stronger than expressive. I can talk to him without signing through the simple aspects of our routine and that works out fine. He doesn't like to wear it at home. We don't press him to, but, I will admit, I may or may not have bribed him with chocolate milk to wear it at home sometimes. He wears it at school or usually any other time when we're not home. He is most comfortable with ASL, and that is the language we use with him primarily, even if we are speaking, too. This is especially true in discipline situations, where I need to use whatever language we have to its fullest, and since ASL is his preferred language, that is what I use.

From the beginning, we've pursued our education in ASL vigorously. We've taken classes, lived in the dictionary, had Deaf Mentors. But we are far from native signers. We get by. We can communicate fairly effectively with our four-year-old: we can read books in ASL and talk to him about the world around us.

I have found lately, though, that my ASL is starting to fail my parenting needs. It's taken me awhile to figure out what the matter is, because I know the signs and how to use them, but somehow I'm failing to communicate. I think there is a Deaf presence that I don't have. I'm not really sure how to describe it. A way of using my body that transcends the actual signs, that enters into his space, meets it, communicates with it. Connection is a key part of my parenting philosophy and to be so defeated by the basic communication that I need to make it happen is beyond frustrating. It has deeply discouraged me in these past few months especially.

It's not all a total big Fail. We do get along, after all. We do connect. I give him as much physical presence as I can. I give him as much language as I can. And we are a happy family. But sometimes I look at my hearing friends with their hearing kids--parents and children who speak the same native language--and wonder at the ease of it all. To just talk, effortlessly.

He shuts his eyes. Bam. Communication stops. He glances away from me, focusing back to his play. Communication stops. Sure, he might pick up more than I think peripherally. But it is unnerving to have the eye contact lost. The conversation could just be small talk about his play, but it is lost mid-sentence. Is my signing that weak? Do I not have the persona to indicate that I'm talking to you? Ellis seems to think that I can only hear him if I'm looking at him. He screams my name while I am driving until I glance back giving him the visual acknowledgment that I hear him. (Dang! We need a mirror!) He also thinks that if I don't acknowledge him the split second he says my name that I must not hear him, so he repeats it at blood-curdling volumes, until I can turn to him. I'm rambling a little. This summer has been a roller-coaster. My nerves feel shot from his screaming my name, though it's getting a little better.

He's changing socially. We were at a birthday party with all hearing kids, kids he's known since infancy. Another guest, another little boy, ran up to Ellis, hi! what's your name? Ellis didn't know what he said. How much do I step in to intervene? Do I translate for E? Let it go and watch him slip into isolated play? Do I go through the conversation for the bazillionth time? oh, hi. His name is Ellis. He can't hear you, so we talk with our hands. can you say 'hi' like this? Some kids get into it. Some feel awkward and back away. Bless the little British kid at the park the other day who made fast friends with E despite his curious quality.

How do I balance it all? As a mother I want to protect him from all this. I want to make a world that fits him perfectly. I don't want to have to teach him how to negotiate through languages and worlds. I wish I had more to offer him. Yet at the same time, he's doing a pretty good job. Sometimes, I just have to stop and let go. Let him run ahead, trusting that he'll turn around. After all, I am not in control. The God who gave me Ellis also has Ellis perfectly in His arms.

Yesterday we went down to the children's hospital (CHOP) again for Ellis's two year evaluation and mapping. Today marks two years since his activation of his cochlear implant. He wears a Cochlear Freedom on his right ear.

Ellis is interesting. I think we all expected him to really get into his implant, but he hasn't so much. He's not an auditorally-inclined person. I really wasn't sure what to expect at his appointments, because compared to some CI kids who have had implant(s) as long as he has, he might not be doing as much as they are. I will say, though, personally, we don't "need" him to be doing that, you know? He's bilingual. And he rocks ASL. So, for having a deaf child, we're doing pretty well in the language-as-a-whole category. I don't feel defeated or discouraged because he's not indistinguishable from a hearing child.

We met with his former speech therapist, who has switched to part-time following the advent of her cute baby. It was so great to see her again!! Ellis was excited to play with Rebecca again. He often asks for her if he sees that we're heading towards center city. She was mostly in eval. mode. Receptively he's doing really great. Right on target. Expressively, though, well, put it this way: if he doesn't sign, too, I have no idea what he's saying. She's hoping to squeeze him in for a few sessions to help him with articulation.

After lunch, we saw Ellis's audiologist again. Ellis has had mixed experience in the hearing booth, so I'm usually a little nervous. He's never been a fan of the conditioned play (where they hold a block to their ear and then put it in the bucket when they hear something). So this time we tried to do it like a big boy, just raise your hand if you hear something. He loved that! The audiologist got a pretty good idea of what he's hearing with his implant. We talked some and he fiddled with the programming on the implant.

I've been nervous, because Ellis doesn't always want to wear his CI, which is fine, mostly. On the one hand, if he's been listening for awhile and he's tired, that's fine. But to just kind of not wear it, like not wanting to wear shoes, I'm a little more reticent, because consistent stimulation will provide him with the most benefit. So we do a lot of off and on and off and on. He's cool at school, but not so much at home, etc. I wasn't sure what they would say when we went in to his evaluation.

I must say, that we've got to be the luckiest bi-bi family in this country. Seriously, I love our hospital! I love our peeps!! I was explaining to the audiologist that Ellis is making progress, but he's no CI wunderkind or anything. But the audiologist was so encouraging: Ellis is the measure of his own success, and he's doing great! In other words, don't compare him to other kids, he's learning in his own way, in his own time, and that's great success for him. He's definitely getting great auditory benefit from the CI. I'm so happy that our both Ellis's school and his team of hearing professionals see Ellis as a whole Deaf person with a variety of skills, talents, and successes.

Ellis's birthday was yesterday, but basically he's been celebrating his birthday for the past three weeks. I explained to him that first, it was Marlowe's birthday, then his, then Daddy's (whose bday is in a couple of weeks). As soon as M's birthday was over three weeks ago (they are exactly three weeks apart), it has been E's birthday. This past weekend was the real party, though.

Saturday was birhtday party day. This is the first year that Ellis has truly grasped the anticipation of his birthday. After he went to bed on Friday night, I decorated the kitchen and set the table for his birthday breakfast. Marlowe woke me with plenty of time to prepare his chocolate chip pancakes before he woke up. So everything was perfect when he came out of his bedroom. Candles. Pancakes. Smoothies. It was like Christmas.

I found an album of his baby pictures and set that out for him. He loved looking at it. Pointing out all the pictures of baby Ellis. Finding the album was sort of an afterthought, but I thought it might be a fun tradition: birthday breakfast and looking at the baby pictures.

After breakfast we went over to the arboretum to say hello to the trains.

Then we went to Grammy's house for the big birthday. Grammy and Poppy gave Ellis his presents in the afternoon so that he could enjoy them for a little while. A watch and a bike. He looks so grown up!

We planned a fun party outdoors, but about 10 mins before the guests were due to arrive the low rumbling of thunder told us that it was time to move indoors. My optimism ran out. Thus began the most chaotic hour of my life. Kids. Screaming. Running. Inside. I suppose if I had had a clearer head, I could've done more constructive activities. But to be honest, I had been concentrating on optimism that it wouldn't rain. But then we ate and let them watch Tom and Jerry. Which turned out to be a good move, because then the adults could enjoy each other's company more. And the kids had a great time despite it all.

We had a few church friends over, kids Ellis has grown up with. But this year we invited a couple of school friends that he gets along well with. Both of these boys come from Deaf families, so we had a lot of fun hosting our first mixed Deaf/hearing party. As Ellis has gotten older, sometimes big parties overwhelm and he retreats to the basement. But with his Deaf friends, he was so much more vibrant. It's been amazing to watch him develop socially like this. How, at four years old, sharing a common bond of language is already so important.

On Monday, his actual birthday, I sent brownies to school. He came home wearing a Happy Birthday sticker on his shirt. And we took him out to eat for dinner. I am ready for birthday to be over. I think it'll take a little while for him to ease out of it. We may just end up with a summer of birthday.

A couple weeks ago we had our last speech therapy session at the children's hospital. We have been going every week since Ellis's CI was activated 21 months ago. He does get speech therapy, both group and privately, in school, but we had been going to CHOP for a little extra. It was also nice to have his therapist's input on his development, since she has more CI experience than Ellis's school (which is actively striving to improve their CI services; don't want to discredit them). CHOP Therapist and School Therapist also communicated closely, so it was a great situation for Ellis. But, happy for Therapist, she just had a baby girl! And only plans on returning to work part-time. So we decided to go with just the school therapy for awhile and see how he does, checking in with Therapist every few months at CHOP.

I think it will be a nice break for Ellis, to let things sink in for awhile. He's not a CI wunderkind. He's not the kind of kid who falls in love with his CI and wants to wear it all the time. There are often a couple hours a day where he doesn't want to wear it--almost two years after getting. And it requires a little extra effort (than another kid with CI in similar circumstances) on his part to speak and to listen. But he steadily, very gradually improves. For instance, for months and months and months, he's been calling me "Mah-eee". We've worked and worked and worked at getting him to say "MoMMy", which he can do in a therapy session, but won't spontaneously say. Lately, I'm "Mahtee". Well, at least we got a consonant in there.

For Ellis, I think his first language is truly American Sign Language. We've tried to give him as equal opportunity in both spoken English and ASL as we can. We've provided the same kind of CI environment (talk, talk, talk, narrate, narrate, narrate) that other hearing families do. But without stopping signing either. For us it's a whole language environment. We don't care so much that he learns to speak just like any old hearing child (though prospects are good for pretty good speech); we do care that he always has as much access to language as possible.

I recently caught Ellis signing in his sleep. Now if that isn't native language behaviour, I don't know what is.