Thursday, January 26, 2012

Feeling guilty your child is deaf? One CODA's advice...

I'll get the update out of the way first. The short story version of Allesandra's Bequest is a few short chapters from being completed. The editing is about 1/3 completed, which means that things are looking pretty good to have this published sometime in february. I am hoping for earlier than later.

Tonight I want to tell you about guilt. Guilt is a nasty feeling that nobody wants, and one that we try to get rid of as soon as it sets in. However, when it's in our faces everyday, we bow to its will.
Let's take that notion to hearing parents of deaf children. Most parents do feel guilty about their child being deaf, and blame themselves for it. It's in their face every time they look at their child and every time they think about it. It's oppressive, and many of these parents do bow to its will. They will do anything a doctor tells them to do to help their child be "normal", and if you know anything about Audism, that's the first time it affects a deaf child's life.
Audism feeds on guilt like a hunter feeds on prey. Once it has a person in its sights, it's game on. All the bad advice from people who are Audists twist the knife of guilt deeper into a parent, and they follow blindly in the hopes that the advice given will work. Many even believe the lie that they cannot communicate with their own child because their child can’t speak.
I have three words for any parent in this country who find themselves in this position - American Sign Language. Yea sure, it's visual and signed on the hands instead of auditory and spoken orally, but it's something your child CAN do.
My mother is the best example I can describe to you. She was born deaf, and doctors advised her parents to get hearing aids, as well as go to public school and just be "normal". They were even told by these doctors to never sign to her, as that would limit her ability to speak. The followed that advice faithfully until she was 13 years old. Nothing really improved significantly. Mom could understand written English at about a first grade level, and never developed speech. I talked about it often with my grandmother, and she told me every time that she regretted it. When she was 13, they sent her to a school for the deaf. The school taught everything orally in the classroom, but allowed signing in the residential dorms. Back then, about 99% of the students lived there. ASL was rampant, and all the children could  talk to each other. They couldn’t even do that with their families because they never learned to sign. Unfortunately for my mother, she didn't get this experience until she was 13. She missed so much opportunity for social activity and exposure to a fully accessible language. It has had profound effects on her personality and self-esteem that I'm afraid to admit are irreversible.
The really sad part about all of this is listening to my grandmother talk about it. Her guilt is even worse than it ever was, and though she has tried, she hasn't been able to make it better. There was one time when she was about 70 that she finally saw through me and my sisters what could have been with her own daughter. She saw us signing all the time and doing all the things she wished she could have done with her own daughter. That's when it finally hit her, and she signed up for a beginner ASL class. My sisters and I were thrilled, even though it was so late in life. She has never retained more than the manual alphabet since then, and her feelings of guilt have never left. While she was taking the class I witnessed the most impactful thing I ever saw between the two of them. We were visiting, and my grandmother just suddenly stood up face to face with my mother, and signing what few signs she knew and spelling the rest, she told her own daughter she was sorry for never signing with her and for not sending her the school for the deaf when she was 5. My mother just looked at her and told her it was okay, and that she wasn't mad, even though we all knew better. She just didn’t want her own mother to, even after all those years, feel any worse about it. It has been almost 20 years since that happened, and I have to fight back tears every time I think about it or mention it. I just had to stop typing to wipe off the keyboard. It was too little too late for my mother, but it doesn't have to be for others.
To any hearing parents who have deaf children, is this guilt worth it? Please, whatever you do, let go of the guilt and learn ASL. Your child is deaf, just accept it and love your child unconditionally. You can still use hearing aids and other technology if you want, but don’t deny ASL to your child. Without it, they will likely miss out on so much, and you will only feel more guilt because of it. Please take this as advisement to explore all of your options, especially the ones that doctors don't mention. Find Deaf adults that sign and talk to them. Communicate with your child and give them every opportunity to learn about the world in a way they understand it - visually. You have eyes, too, and you can do it just as they can. You can show them, and if you do, I guarantee your guilt won't be so strong, and more likely gone. You won't regret it.

R. M.

8 comments:

  1. fantastic and welcome! Ill be checking out your shortly.

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  2. Great read...am gonna share this with the KODAs on KODAWest FB page (if not already!)

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  3. Fantastic write up. Tears galore! I think my mom has carried some of the same guilt for years. 3 deaf daughters, oral school, ASL much later, LIFE blossoming afterwards! Your story reflects thousands of us! Thank you for sharing this! Thank you Tina Jo for posting this on KW!

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  4. tina and lisa, thank you for your comments. I am so glad to know this is reaching others who can benefit from it.

    R. M.

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  5. My son was born profoundly deaf. We as hearing parents learned to sign and used total communication at home. He wore hearing aids, which didn't help much because the sound was so distorted. Our son opted for a cochlear implant starting at 12 years old, and was finally allowed one at 15. He enjoys the pure sound that hearing aids could not provide. He never attended a deaf institute, but was mainstreamed throughout his public school tenure. I'm proud to say, with both pidgeon ASL and working with him at home he graduated from high school reading and writing at high school level, he tested into college English 101 (immediately), and graduated from community college with an AS degree and a certificate.
    My point is this, if you have children YOU are responsible to raise your children, no matter what they are or if they have a handicap. This does not include sending them off to be raised by others. Your child is a part of your family and you should love them and pay attention to them so they are nurtured. It is my experience that most of the students (that I have met) coming out of deaf institutes today lack the ability to read and write English fluently. I believe in the past the curriculum for deaf institutes was more oral and English based, so a lot of deaf people who attended them were able to obtain adequate lessons in English. What a blessing for them!
    I do not intend to insult you, R.M. Fraser, but until you have a deaf child and have lived through raising one I believe you may not really understand what it is truly to be a parent of a deaf child. Thank you for your opinion, but I must agree to disagree

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  6. Anonymous,

    Thank you for your comment as any perspective is welcomed to be shared. Having said that, I am informing you now that I will be responding to your comment in my future posts. You mentioned you do not intend to insult me, and I take it on face value that it is not your intention. Regardless of that, you still have.

    You have brought up some important counterpoints that I feel need to be addressed. Throughout these posts, I hope you will come to understand why I see things so differently.

    R. M.

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