diber's blog

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.

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!)

We all have them. The ornaments we made in school when we were little kids. I think mine was made of pipe cleaners and beads; it was supposed to be a wreath.

Ellis came home with probably the best school ornament ever. The ILY glove--a little handing signing "i love you." Yes, it is proudly displayed on my tree!

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 was the first day of the new school year for Ellis. Since we've been involved with school since his first year (early intervention), it seems old hat to us now, even though he is only four. But he moves up to a new classroom. He's in the class with the kids with the most auditory access. And yesterday he came home signing so much. I think we all missed school.

I'll admit, it's been a rough couple of weeks. Not always knowing what to do with my super creative, active boys. I feel the language gap so strongly sometimes. My ASL can barely keep up with my parenting needs. School gives all a little more structure to our day, outlet for creativity, satisfies Ellis's social needs that I can't satisfy, and a few hours of peace at home. I actually *gasp* got the living room clean with no other major household disasters yesterday. It was awesome.

And so my brilliant, confidant, sweet boy ventures forth on another year!