Saturday, October 10, 2009

How We Ended Up Here

This is maybe a good point to mention how we made our choices.
When we found out he was deaf it was a Friday, if we waited for information until Monday to call Early Intervention and more time for an appointment we would have pulled every hair out of our heads. This gave us a gap of time to do some research on our own with no bias. We had enough time to sift through everything available to the general public.

At this time babies were not candidates for implants so that was not on our plate and we had no personal experience with deaf people to influence our view either way.
We also lived in Los Angeles and knew folks from all walks of life. There really was not a "normal". I owned an art gallery and worked on a TV set. My husband wrote and worked camera. Our life was not set in stone so change was maybe easier for us than some. We didn't need a comfort zone. We didn't really have a blueprint for what are son was suppose to be.

Something we did that I feel helped a lot to move on from the shock was to look deep and think about what we really wanted as parents. We realized we didn't loose anything important but we did gain a beautiful baby. We also felt it was not our right to try and force him to fit us but our responsibility to fit him.

The story may have been different if we called the same day and had an appointment a day later. If we hadn't started to sign or look into resources we would have been a captive audience. Much like going to the dentist. You chose gold or porcelain fillings but trust the doctor to fix your tooth. You don't even see what he is doing in your mouth but you are present through the whole thing. You brush your teeth often but if you don't they fall out. It could have happened this way if everyone moved faster.

I was really frustrated because the intervention program was set up in a way so that you had to ask for information. Instead of laying all of the facts on the table and letting you chose you had to go find information then ask for support. A lot of people told us we should sign but really offered no way to do it effectively and offered very little in the way of projected outcome. Signing was like a side dish. The staff was hearing or oral so we didn't have a realistic model for a successful deaf adult who signed as a primary mode of communication. They also projected this patronizing energy like they expected the children to be delayed and the parents to be weak and needy. The did not offer age appropriate benchmarks for typical children but focused on trivial small accomplishments. In the beginning they loved us but as we grew more independent and stretched their beliefs they viewed us a trouble makers, insane, out of control. We felt in order to have the best outcome our approach had to be pure and that was not something they could even provide.

If we felt ASL was our goal we would have to do the work ourselves. So we read and interviewed people. We visited schools and attended workshops. It was very time consuming and if I could I would give each new parent a condensed version in a format the could digest. The first thing they should know about is about possible outcomes not the speech banana.

In our research and interviews with deaf people we noticed this,

Deaf children with deaf parents tend to do better in school

Deaf adults raised with ASL tended to reflect on their childhood with joy. They were more inclined to joke about hearing people and deaf people. They were more likely to encourage us. None expressed a desire to hear and all had active social lives. They did not patronize us like the professionals. It was a bit difficult to find these people at first but once word got out is was easy. Hearing parents we later met who chose to sign seemed so relaxed and happy.

Oral deaf adults were generally grateful, so grateful for all the hard work their mothers did but expressed the grew up isolated and lonely often frustrated. The tended not to tease us or joke around like the signing adults. Mainstreaming was lonely and several told us stories of being bullied or left out. Most hated the hours of speech work. One told me a secret, she had an implant and it it gave her headaches. She no longer uses it. Many talked about not really fitting in as adults and most learned to sign after high school. Hearing parents of oral kids in general seemed guarded and stressed. they would get so excited about the smallest gains.

Then there was the group who started out oral and later were sent to state schools because the "failed" in oral education. We heard many heart breaking stories most ended in joy upon arriving at the deaf school. we didn't meet these parents until he was 4 1/2 and well on our way.

The moment it all came together for me was when I picked up a copy of the "Mask Of Benevolence" by Harlan Lane. All of the vague feelings I had were suddenly very concrete.

Maybe we are selfish our decision was based on what would be the most joyful. So really we didn't want his memories of childhood to be bleak and feeling like he owed us something. We didn't want him to be bored at dinner or family celebrations. I wanted him to be able to tell me about his first crush and first heartbreak.I didn't want him to remember me as the person who sacrificed to fix him. We didn't want his life to be that of a life long patient when he didn't have a disease. We wanted him to feel he could be the one to help not the one who depended on help. We didn't want him to feel disabled. We wanted him to have academic success. I could go on and on but this all leads to language. There are so many languages in the world and none of them scare me but for some reason ASL is often feared.

Again this is just what I was feeling while trying to navigate. This is how I remember it and there is more to tell later.I could be right or wrong but I own my feelings.


I would not change a thing about him.
(well maybe the clean the room thing...)


  1. This should be read as coming directly from the heart. As one of those orally raised kids, I can affirm what you said is true about isolation and the joy of entering a signing program after years of stress and frustration.

    The book "Mask Of Benevolence" by Harlan Lane is excellent but a very deep read for new parents of deaf babies and difficult to understand with no background experience at all. I wish there was a version written for new parents and totally uninvolved hearing people that gives a bit of background first.

    For parents who have been down the road for several years and for most d/Deaf people, this is a very profound read that may upset some. For me it clarified many things and gave me a new perspective on events in my life as well as a base for many of my writings/thinking. If more people read it, it may provide a greater understanding between Deaf and Hearing peoples.

  2. Than you for this comment. This was hard to write because we have been silent for a long time realizing that what we believe can hurt people which is never my intention. Oral parents love their children with the same fierce passion that we love ours. The system divides us. This post was pulling up my frustration back then to show how we decided.

    One more point I would like to make. I don't judge any parent who is trying their best. I just get sad that families don't have more support and and our children have to wait to find each other.

  3. I was raised oral but because of my Deaf brother, I had access to sign language, Deaf babysitters, Deaf events, etc. Middle school was the most difficult time to be mainstreamed because of the cliques the students formed but I was lucky enough to live near the Deaf school and joined their sport teams as well as got to socialize with Deaf kids. It was not until I went to the Model Secondary School for the Deaf that I was fully immersed in the Deaf culture and found my identity as a Deaf person.

  4. "One more point I would like to make. I don't judge any parent who is trying their best. I just get sad that families don't have more support and and our children have to wait to find each other."

    This was a wonderful post. I haven't raised deaf children, but I am late-deafened. I identified with what you said about your "intervention" program. As a late-deafened adult (first diagnosis of progressive hearing loss at age 19) I was sent to a program that taught lip-reading. When I inquired about ASL, I was told not to bother with it, that because I was already oral and benefited from aids, the Deaf community would reject me, that learning ASL was exceedingly difficult and I may never master it, that it wasn't useful in every day applications because most poeple didn't use it, that hearing aids were constantly improving so I could rely on technology. . . .I wish I didn't listen. Finally thirty years later I began exploring ASL, after a lifetime of struggle and the realization that technology would never be good enough. Whether you wear an implant or not, you're STILL deaf.

    Sitting in a restaurant, using ASL with a deaf friend for the first time opened up my world. I saw what I had missed. I now use a version of simcom or pidgin sign with most my late-deafened friends. Some of them sign, some don't. Many believe they can't learn, or don't understand why they should. It's a shame.

    I have a hard time commenting on some google sites, as it requires me to list my google account with my now defunct blog. I'm not there anymore, but at