deaf culture

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.

The two month mark has passed from E's CI activation. He's doing well, especially expressively. When he's wearing the CI, he more regularly turns to his name/other sounds. And he's consistently saying "bye-bye" and "aaah" for airplane. He's imitating speech sounds very well. I'm continually amazed at how great his speech therapist is.

He's also completed two weeks of 2yo preschool/playgroup at PSD. It's three mornings a week. It's been a bit of a tough transition, for him and for me. I leave him crying his head off, but he calms down shortly after I leave and has a great time. He has two good friends, especially, who are from Deaf families, so their signing skills are well-matched. (There's a large variety of signing skills in the 2yo class, depending on how much auditory access the student has/how much signing there is at home.) The boys get along so well and hug and kiss, signing ILY, when they leave. Too cute!!

It's been harder for me than I anticipated. I never pictured myself as the freak-out parent. I think I still have guilt feelings over the CI surgery, and I worry that our relationship will be damaged. But I think it will be fine. And the time alone in the morning is really nice, I have to admit. It's a bit far to go all the way home and back again, so I sit in a coffee shop and read. Luxurious.

The other day I picked E from school, sitting with him as he was finishing lunch. A Deaf woman was there with the Deaf grandmother of another student. E sticks out around his table of 2yo. The class is divided at this point. The half of the class with more auditory access are at one table behind the room divider where speaking and listening is more prominent. The other half is at an ASL table. E sits at the ASL table. It's easy for us to open our mouths and talk at home, and voila! he has a speech environment. It's important for him to have good ASL skills, and though, we do sign at home, it's not like being around native speakers.

So he sits at the ASL table, the red light blinking on his CI. The Deaf woman asked me a few things about E. Then she said, "I wear hearing aids. They tell me to get the cochlear and I say no, God made me deaf for a reason, so I wear hearing aids." I smiled politely. But I was frustrated by her statement, not only for the tiny fact that it was tacitly judgemental of me, a total stranger, but also because, I want to ask, "so what's the difference!?!?" He wears a CI, you wear a hearing aid. You are both getting some auditory access. Why is it okay to wear an aid but not an implant!?!? You are still the same person. I don't think a CI has to change someone's deafness. People don't have to be Deaf the same way! I love meeting new Deaf people, but I was a little annoyed by this woman's bluntness. We've gotten a lot of CI flack on the internet but not so much person-to-person. I'm sure this will be one of many experiences.

Anyway, in light of all this, there's vlog made by the president of Gallaudet University, Robert Davila. View Bob's Vlog (it's captioned for non-ASLers). He is interviewing two Gallaudet students who wear CI's. The message of the vlog is very clear, the normalization of CI's--they don't change your personhood, they don't have to compromise your Deaf identity. I have to admit, I resonate with a lot of what he said. It wasn't too long ago when the same arguments and fears were made about hearing aids, but who talks about aids anymore? I know a lot of people will hate this vlog. I will admit, I don't understand unilateral hatred of CIs.

I work hard at understanding multiple perspectives in all areas of my life and work. It's an essential tool for scholarship. Nothing frustrates me more when others don't do the same.

post scriptum: I'm tempted to close the comments to this post, but I won't. I trust that the old CI dead horse won't be dragged up on here again. We've all made our points. So if you don't have anything constructive to say, please refrain from saying it.

bust of Laurent Clerc

By request, I'm posting a bit more about our stop at the American School for the Deaf in Hartford on the way home from our fabulous Maine Vacation. This was our first trip up through New England, and I thought that it was kind of cool how close everything is. Driving through Massachusetts is like reading an American History textbook as you pass each exit. We drove by the exit for Walden Pond and though, 'hey, we should go there on the way home!' Over vacation, though, Chris had been reading When the Mind Hears: A History of the Deaf by Harlan Lane. So when we started talking about Walden Pond again, he suggested that we stop in Hartford instead and check out deaf history sites. (It also worked out at the last minute to see one of my best college friends, who just happened to be teaching violin like 2 miles away from ASD! Woohoo!)

Unfortunately we could drive all over Hartford visiting everything or make it in time to ASD to check out their little museum, but we did get to see the bust of Laurent Clerc. Ellis was thrilled to see the ASL letters sculpted at the bottom. He's obsessed with letters lately. He gets most English letters, but he's a bit stronger with ASL letters. :-) So he had a lot of fun spelling out Clerc's name.

We also took a photo op with Gallaudet and his neighbor girl Alice Cogswell.

I haven't read the history yet, though read a chapter of it on the way to Hartford to be familiar with what we were visiting. Gallaudet was a minister in Hartford, late 18th/early 19th century. The story goes that one day he was watching the neighbor children play. He knew that one of the daughters was deaf and got it into his head to teach her the word Hat by associating the written word with the object. Whether or not she learned it, his passion for deaf education was sparked. Along with Alice's father, an eminent doctor in the city, as well as his good friend, enough support was raised to send Gallaudet to deaf education establishments in Europe to seek assistance in establishing the first deaf school in America. In England, primarily an oralist country, he was met with secretism and general unhelpfulness.

But while he was there, he bumped into Laurent Clerc, a Frenchman who was also in London at the time. Gallaudet finally gave up on England and went to Paris. Clerc was a deaf man, educated at a school that used French Sign Language to teach the students language and knowledge content. Rather than spending long (futile?) hours learning how to speak, their primary motive was restoring their students to knowledge using their natural language. (This was also the time of the Enlightenment in France; it would be interesting to flush this out a bit more.) Gallaudet was excited to start learning sign language but overwhelmed at the thought of how long it would take him to be proficient enough to teach the students in America. He finally persuaded Clerc to come back with him, and together they opened the first school for the deaf in the United States in Hartford, Connecticut. Clerc remained the U.S. for the rest of his life.

So that's the short story. And as we begin our journey with our deaf son, it seemed like the birthplace of deaf culture in the United States was a good place to stop.

E and I are at my parents' for a couple of days.
Hoping to enjoy friends, the dog, throwing rocks in the pond, riding trains, fresh tomatoes and peaches, And I have a couple of brilliant sewing projects to finish.

So back to our regularly scheduled blog-lite. Thanks to all who contributed to a lively discussion here this weekend. You've certainly given us a lot to talk about, as we hope to have contributed just a wee bit, too. Cheers, peeps!

Though I almost never post on my wife's blog, I almost always read through the comments she gets re. d/Deaf issues. Mostly I tend to stay away from commenting, because I have a tendency to take things personally, whereas she is much more measured in her responses. However, I feel like taking this opportunity to reiterate for those not familiar with our story, some of our reasoning about the CI.

It seems that most of the negative reactions to Ellis' CI center on the accusation that we are doing what is best for ourselves, and not what is best for Ellis, because:

1. We made a decision on his behalf, without his knowledge or consent
2. The decision we made significantly alters his experience of being
d/Deaf; which is to say, we have interfered in the development of his
sense of self.

The irony here is that if we really had done what was best for ourselves-- that is, if we had made what for us would have been the easy decision, then Ellis would not be implanted. From the get-go, we had the following concerns about the CI:

1. If we implant him, will we get lazy and stop signing to him?
2. Will he be 'classed' or even rejected by the d/Deaf community?
3. Will bilingualism really work, or is it a fantasy that we can give him
the best of both worlds?

Here was the argument we made to ourselves about these concerns: every one of these worries is really a worry about our own commitment and our own sense of who Ellis is now and who we want him to become. The truly selfless thing to do would be to put aside our own anxieties and our own pride in his d/Deafness and choose the thing that will give him every opportunity to be successful in either or both worlds, as he chooses.

The fact of the matter-- and this comes from years of research, training, and experience as an educator of ESL students, is that there is no substitute for acquiring language at a young age. If a child misses the opportunity to learn language at a young age, it is almost impossible to catch up. Not that many haven't done very well, but they can never equal the ease and skill of the early learner.

To not implant Ellis, but to wait until he is an adult, would leave him at a disadvantage should he decide to keep the implant on. His choice would therefore not be between the best of either or both worlds. It would be between the ease and familiarity of deafness and the labor and discomfort of hearing. Not really a choice, is it?

(A deep breath) I can already hear the critics. They've stopped reading already, and they are already preparing their rants about how the devil parents have ruined their son, made him into a moron (?) etc. Maybe we did make a mistake. Shoot, we've made plenty of those already in the two years of his life and we expect to make a few more.

Thank goodness that Ellis doesn't have to be ruined by them, though. For all the talk here about identity, sense of self, etc., I have to say that our view of Ellis's personhood is limited neither by his deafness nor, should he have been born otherwise, his hearing. I hope that Ellis is a full enough person that whether he hears or not, whether he thinks of himself as Deaf or not, he finds a way to live an honest and honorable life in whatever circumstances he finds himself.

There is no way to save him from suffering. There is no way to avoid limiting his choices in some fashion, try though we might. In the end, whether hearing, deaf, blind, paralytic, male, female or neuter., we all have the same basic choices to make about how we will live with respect to our limitations. The choices that Ellis makes in this respect will determine the quality of person he is, and whether or not he merits our respect (he will always have our love).

UPDATE: (Mom here) We just want to clarify that by "acquistion of language" we don't mean, that in order to have Language he needs a CI. He already has a language: ASL, but a CI will help learn English more easily. Sorry. We gotta run, or I'd try to make this clearer.
Dad meant by "acquisition of language" the acquisition of English, treating ASL as a given, since that is already part of our lives.
In other words, BIlingual.

Ellis's CI was activated on July 24. It is now August 25. So, how is E doing?
Well, not bad!

Sound awareness is the first step in the CI training process. Learning how to use the CI is often called "rehabilitation", but I find that term kind of yuck. I want to ask, Rehabilitation from what? So on this blog, I will call it CI Training, since it is a tool that needs to be learned how to use.

He's not responding to sounds spontaneously yet. Though we do notice that about every 500th time we call his name, he does respond--in a meaningful way, not just the coincidental nod. If we are in a controlled environment, playing one of our new speech therapy games, he's on the money. He's totally hearing it!!

In this video, we are going through the 6 Ling Sounds: aah, eee, ooh, mm, ssh, ss, which span the frequency of sounds. (Except I forgot Sss in the movie. Oh well.) I get him to focus by holding the train track up, covering my mouth, and when he responds I give him the track. He thinks it's great fun, and later I catch him "talking" to the train tracks. Ha!!

A word from the Technical Advisory Board: Okay, still working on video-editing skillz. So I forgot to delete almost 2 mins of nothing at the end. The video is only 2'50". I tried to make it equally accessible to deaf and hearing. Though my voice-over at the beginning is a little rough, and I didn't subtitle every little incidental comment I may have made, like "Do you have a silly train track on your head?". And there's happy train music at the end.

I wanted to post a link to a blog that I guest blogged on yesterday. Amy and I have had some exciting conversations and we wanted to share some our dialogue, which we did on her blog. It's been an incredibly encouraging to me as a parent, yet unsure how my crazy kid's life is going to go. :-) I'm totally pumped, writing the blog entry and VIDEOchatting later. How exciting!!!!

When we had a baby and found out that he was deaf, one of the first things we did was set about learning sign language as fast as possible. Signing was something I was considering anyway, because of the widespread popularity of baby signs to give babies early communication tools. And I mean, don't all deaf people sign? The answer, astoundingly, is NO!

There are a huge amount of deaf babies that are born and not taught sign language. It's ironic, isn't it? The professionals tell the parents that if they sign with their deaf babies, they'll never learn how to talk. Which is like the biggest myth ever. But it started with Alexander Graham Bell, you know, the American hero who invented the telephone? He actually had some really harsh things to say against deaf people and signing, bordering on eugenicsm. It's really shocking. But ever since there's been this ridiculous strain of auditory-ism in deaf education.

Why wouldn't you teach a baby using its strengths in those early language years? I tell my friends that so many people don't sign with their deaf babies, and they are so surprised! But we sign with our hearing babies!

Amy Cohen Efron, a Deaf blogger, made a great essay vlog (videoblog) about this Great Irony.

The AG Bell Foundation national meeting is this weekend, and many Deaf adults are protesting for the rights of deaf babies to sign. I've appreciated the polemic they've taken, promoting bilingualism, with the emphasis on teaching babies using their strength, their visual and manual senses, early on.

It doesn't seem like the protest is going very well, given the report on the blogs. It's kind of sad, because the conference hotel is very hostile, when protesters planned very carefully how to be peaceful and positive.

For real. Done baking. Kitchen cleaned. Floor mopped.

Monsieurs et 'dames. Je vous presente Le Pumpkin Pie de l'An 2006:

Chris's aunt sent us this awesome "I love You" cookie cutter the other day. Since I like to make a little decoration for the top of hte pie, and since I was making a pie to take the Fall Feast at Penn. School for Deaf, the stars lined up perfectly.

We had fun at Fall Feast. Ellis's class (The Under Two's) made applesauce to contribute.

I linger as long as we can the days we go. I enjoy seeing Ellis play with the other Deaf boys (yea, there seems to be mostly boys in his class); and they're all getting to the age where they're starting to interact more. I can see subtle differences already between how Ellis interacts with hearing kids and deaf kids. I also like to talk as much as possible with the Deaf adults there. Everyone is so amiable, and I'm getting better at ASL, so it's more fun. (But, oh! I need the practice!!) When we leave PSD it's back to just our hearing world. And our constant work each day to sign more and more without the benefit of being around the native speakers. I really treasure those times there.

And finally, I present He Likes to Be Involved, Part 3. I let him help me make biscuits. He loved it. But he was so serious about it, it cracked me up!

I like to think of this one as the "Emeril Edition" given his attire of Mardi Gras beads.

Happy Thanksgiving, folks!! Safe travels and all that.