Tag: deaf

Posted on in ASL, day program, deaf, special needs, strength

Who Knew Starting Pre-School Would Be Easier Than Starting a Day Program?

When Rhia was 3 and began pre-school, she happily took her teacher’s hand and waved to me. “Bye Mama!” She then turned away and tottered off to her new class. I was stunned. Where were the tears? The clinging, wailing, begging me not to go? Everyone had prepared me to be strong and walk away from my crying child. Instead, I was the one crying as I waved. “Bye-bye Baby.”

Fast forward 21 years. We are standing in the library, meeting the aids and participants of her new day program. For 8 months I have been fighting to get her into a program and at last we are here! I’m excited for her to meeting new people and begin her new life in our new city. Rhia on the other hand…

“I don’t want to be here!” Her cry echoes off the library shelves. Everyone in the once quiet building stares at us.

“But sweetie, this is where you’ll make new friends.”

“No!”

“We talked about this. You’re starting a new program so you’re not stuck in the house all day.”

“I like being home.”

“I know, but you can’t stay home anymore. I have to work…”

“Then I’ll go to work with you.”

“You can’t come every day…”

“Why? I like it there.”

“Rhia, it’s okay to come to my work sometimes, but not all the time.”

“Well I’m not gonna come here.” She hunches her shoulders and looks down, essentially blocking out any further discussion. Arguing with a deaf-girl can be annoying.

I wait… and wait… and wait… then I bend down until she can see me and sign, “Please give it a try.”

Rhia looks up at me and bursts into tear. “But no one knows my language! I can’t understand anybody!”

That is the whole problem in a nutshell, and is why it’s taken 8 months to find any program at all. No one knows American Sign Language. Rhia uses her voice to speak, but needs ASL to understand what people say to her. She is deaf, but there are no programs that provide interpreters. This new program is willing to learn ASL as fast as possible and provide whatever support they can to help Rhia understand, everything from pictures to icons to visual schedules. They are going beyond their limits to create something for her, while recognizing that communication won’t be a quick fix. I bought a new iPad with a communication program all set up for her to use. And I’ve come with her to train staff and provide emotional support to help Rhia with this transition.

But I go back to work next week. It’s time for Rhia to start her program. There’s nothing more I can do. I can only imaging how terrifying it must be to spend your day with strangers who don’t know your language and you can’t understand what is happening. When I leave her at her program on my first day back to work, I suspect we’ll both be crying.

I’ll keep looking for a better fit. In the mean time, this is the best we can do, and I feel guilty as hell.

Posted on in ASL, deaf, disabilities, life, special needs

How deaf is she?

A friend sent me a link to a video called “Are You Deaf Enough, by Jessica Killgren-Fozard, which was posted by Ai-Media. Here is the link to the video:

https://www.facebook.com/aimediaAUS/videos/10155585533079220/

In the video, Ms. Kellgren-Fozard talks about how it feels when people ask her how deaf she is. How much can she hear? Why doesn’t she “sound deaf”? The questions and her response reminded me of how I feel when people ask about my daughter Rhia.

How much can she hear? What does she hear? Can she hear me at all? When did she lose her hearing? She looks like she hears me, are you sure she can’t hear my voice? Why doesn’t she wear hearing aids? Have you considered cochlear implants? 

The answers are: I don’t know. I don’t live in Rhia’s skin and I don’t have her ears. There is no way I can know what she does and doesn’t hear. All I can do is guess, just as the doctors and the audiologist have guessed. We think she hears sound, but it’s garbled, like trying to understand a foreign language under water. She doesn’t hear high pitched sounds. How do I know? Because when the smoke detectors go off she doesn’t even flinch. She looks like she hears you because she used to hear so understands that you are speaking to her and she is clever enough to make excellent guesses about what you are probably saying. But that too is my guess. Maybe she can hear you sometimes, but it fades in and out. She tried hearing aids but hated them. A cochlear requires major surgery and she hates that too, so she learned sign language. Any other questions?

The questions are all about what she can and can’t do. People listen to the answers, nod, attempt to communicate with her for about a minute, then move on. Once they have proven to themselves that Rhia can’t hear, they stop trying to talk to her.

Occasionally I am asked, “How should I talk to her?” What a wonderful question! Instead of wanting to know how Rhia adapts, a person will ask how they can adapt to her. I see people try to communicate with her and include her in an activity. It’s not easy and I don’t blame people when they eventually give up. But the ones who really try to connect with Rhia are rewarded with her bright smile. If they know even a little sign language, Rhia beams and says “They know my language!” All it takes is getting close, making sure she’s looking at you and then signing, “It’s good to see you.”

I know when people ask me about Rhia’s hearing they aren’t trying to be rude or cruel; they really want to understand and learn. And most of the time I don’t mind answering. But if you’re going to ask the hard questions, be sure to follow up with a question about communication. How does Rhia like to be included? What is her favorite thing to do? Can you help me sign a question? Does Rhia understand what is happening? How can I help her understand? Would Rhia like a cookie? How do I sign “cookie”?

The more you focus on who Rhia is and learn how to communicate with her, the more you will discover she is a vibrant, funny, kind hearted young woman who loves to sing and go for walks on sunny days. She’s also deaf.