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Dirty Laundry Blog by Jennifer Hynes

  • Is ASL and not Spoken English Fiona’s Real first language?

    June 28th, 2019

    Things have progressed in my fight, battle, request? I have no idea now what the right word to describe what I’ve been working towards. You’ve read it, the pilgrimage to the place I am now. WOW! What a ride. Now my whole family is signed up for a twelve-week ASL course starting in two to three weeks. When Fiona was born and I received all the literature from the National Institute for Newborn hearing screening I knew immediately that I wanted total communication for Fiona, that I wanted us to learn sign language, I didn’t know the difference between ASL and SEE sign, really. In the Early Start program we were in we did TC. I never expected Fiona’s dad or brother to need to learn sign. I knew I would no matter what and I would make sure Fiona knew sign, but never really expected other members of my family to, or my friends.

    When I dropped Fiona off at camp this morning and the music was blaring, and her friend wasn’t at camp yet, Fiona looked so unhappy. I felt so bad. I told the camp counselors and they turned down the radio, I felt bad suggesting this too, like changing things for one person when everyone else was fine with the loud music. I told the camp counselor, just so you know Fiona won’t be able to hear anything when it’s this loud. I tried to get Fiona to talk to another little girl who looked as lost and uncomfortable as Fiona. But it was just too loud. I thought, if Fiona was fluent in ASL and had an interpreter she wouldn’t be totally isolated unable to communicate or make new friends. That’s crazy! Fiona was in a position where she was surrounded by 60 plus kids, all having fun, dancing, laughing, talking, but Fiona was unable to communicate with anyone. Theoretically Fiona could have gone and tried to play with some kids, but if they said anything Fiona wouldn’t hear them. It’s hard for kids to make new friends without a disability.

    I’ve often heard people saying ASL is the first language for deaf people. Regarding Fiona I’ve heard from her teachers and other experts that English is Fiona’s first language. Because she wore hearing aids and learned English, (with sign language back-up always, but it was SEE sign) that English is Fiona’s first language. But if everyday there are multiple situations where Fiona can’t hear correctly with her hearing aid, but if she was fluent in sign language and there was at least one other person fluent in sign language always Fiona would never be without a way to engage. So, in a way, even for Fiona who has a hearing aid and residual hearing on her right ear, who spent the first five years wearing two hearing aids and is at grade level when it comes to English comprehension, sign language is the only way Fiona will have access to full communication consistently. We can’t count on the hearing aids or the environment to be one that lets Fiona have full access to language.

     

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  • ADR’s and Cat Scan’s Oh My

    June 25th, 2019

    “Mom, did you wear hearing aids when you were a baby?”

    “No Fiona, I didn’t because I when I was born, I could hear. “

    “I don’t want to wear hearing aids.” Fiona said. She let her head hang towards the floor. I had my head peered out the bathroom door. I wanted to make sure we didn’t miss our appointment, and when Fiona’s going to the bathroom that’s a long process. That’s the one thing I will not miss when my kids get older, waiting for them when they go to the bathroom.

    “Will I hear when I get older, like you?” Fiona asked.

    “No Fiona, you will only hear with hearing aids or cochlear implants.” I said.

    The door is ajar and the receptionist and patients in the nuclear medicine waiting area can hear our conversation. We have been here since 10:30, the appointment was supposed to be at 10:45 but the doctor put in the wrong type of cat scan, we have to wait to get the right type of cat scan ordered, it was already after 11:00.

    We had an interesting time at the hospital. We moved into the main building from the trailer and still had two E.R. patients in front of us. I felt bad for Fiona missing summer camp. I think she may have enjoyed some of the hospital visit, she mostly ate junk all day long.

    I feel Fiona didn’t understand a lot of what was said today. Reading Groovicorns in the nuclear medicine waiting room was great. The conversation in the bathroom was easy understood. Once we got into the main hospital much of the time was spent with Fiona walking behind me, which we can not talk during that, she can’t hear me from that far away or with my back turned. I don’t feel like Fiona could understand much of what I said in the Cafeteria, I found the conversation very strained in there. The table was wide. I also couldn’t think of signs to use about what Fiona wanted to talk about. She was very interested in what the medical staff at the hospital were wearing. And why.

    This is becoming a pattern. The same thing happened at the Audiologist. Fiona was unable to understand the medical terminology that was said, she wasn’t able to hear anything. But people were talking about her and medical things that were going to be done to her. At what point does Fiona need an interpreter at doctors’ visits? One of the things I’m going to do is make a book for us of Medical Terminology that keeps coming up and the signs, we will learn it together.

    There are tons of times we can be together without using sign language, quiet, one on one conversation with a familiar subject or reading a book when it’s quiet. Anything when it’s super quiet. But most of life is spent in noisy environments. Not designed for deaf or hoh people. Explaining new vocabulary, I feel Fiona will always need sign language support. Very direct teaching.

    The woman from the ADR told me not to be nervous or scared about tomorrow. That’s it’s just a relaxing conversation to collaborate on how to come up with a solution to our problem. I feel sick. I feel like I completely do not know what to expect or what to ask for. I think Fiona needs to be in a program like she was just in or something similar. Or somehow get that type of teaching in the mainstream classroom. Then Fiona needs to teach her friends sign language.

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  • Fading Moss on the Tree Trunks

    June 24th, 2019

    Creek, only a trickle of water left below a backdrop of tan hills. Rust colored bay leaves on the dry ground, fallen tree, roots exposed, cut, covered in dirt, spiderwebs. Moss fading on tree trunks, birds chirp and woodpeckers peck. I write on the back of Jack and Fiona’s summer school schedule as I sit on a rock under tree’s taking a break on my morning hike. It’s hot today and my dog Billy can’t go as far or as fast in this weather- this year. It’s a strange transition to go through, a dog getting older. Billy has always been a durable dog, never getting very tired. She always knew how to pace herself. I have to be very careful with her this summer. I read it’s supposed to be one of the hottest summers on record here, on the pacific coast. The sky already looks hazy and smoky. Summer is here.

    Jack and Fiona were so excited for their first day of summer camp. I still have my reservations about Fiona being there all day with only one hearing aid and where no one knows any sign language. On our way to summer camp this morning I was telling Fiona again, make sure you tell the kids and camp counselors to talk to your right side, tell them if you didn’t understand what they say, make sure they know when your hearing aids are off you can’t hear them. Fiona said, what if I can’t hear the kids talking when they are talking to each other? I told her, It’s O.K., you don’t need to hear everything everyone is saying at summer camp, just have fun. It would be cool if someone knew sign language there, maybe someone will? Fiona should be in an ASL camp or a camp specifically for Deaf/HOH kids. Maybe next year. Or maybe she brings an interpreter with her next time. I tried to find an interpreter for her this year, I called two Interpreter agencies and there were no interpreters available in Marin County.

    After I pick up Fiona we have to go to the ENT. I feel bad she has to go to another doctor appointment. There are two more audiology appointments this month as well. I feel like she’s gone to enough appointments for now. Nothing is going to make her hear again, except maybe cochlear implants, but that decision is a long way off. The audiologist said her hearing would have to stabilize first before even considering that. And the amount of doctor appointments that getting cochlear implants will take is beyond what I would want to put Fiona through right now.

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