Myths and Misunderstandings? (Part 1)

When Miss Kat was diagnosed with a hearing loss, we immediately sought out the Deaf community and asked for their experiences. We asked what their parents did with them, how it worked, and what they would choose for their own children. We heard the same story, over and over. They were raised orally, with varying degrees of success, then, as teens or adults, they discovered ASL and it changed their life. Communication became an ease, they discovered people who understood them, they were reborn.

We also asked them what they thought of oralism and cochlear implants. They told me that lazy parents chose CI's. They want to fix their kids. They don't accept them as Deaf. We were patted on the back, told that we were special, we were the only parents who "got it". Our daughter would turn out healthy and whole. She would read well, and never struggle. She would never have language delays, because we gave her ASL. They also promised that she would gain spoken language just as easily as oral kids. They told us that ASL NEVER hinders a child's spoken language and that she would pick it up.

We ate up the things we were told! We met a lot of kids in the beginning, through our early intervention and Parent Infant Program. We were the only family that did voice off ASL. The vast majority did a sort of TC approach. They would sign and talk, sometimes at the same time, sometime one then the other, sometimes focus completely on one of the languages. Then there were the "oral kids". I always felt so bad for these kids. I "knew" that they were destined to fail. I judged their parents. Why didn't they "get it"??? Why didn't they want their child to have language??? Why were they forcing them to struggle?? Didn't they understand that their kid NEEDED ASL? That they couldn't possibly learn spoken language fluently! Why didn't they just learn ASL and save their children years of pain? ALL deaf kids grew up and joined the Deaf community, why didn't accept that??

Then some time started to pass....I started noticing that their kids were doing great! They were learning and communicating and were happy. They were doing great in school and they weren't behind. I met kids with CI's who were doing AMAZING! They could speak and understand everything I said, and they certainly weren't struggling. They could hear. They were deaf, but they heard even quiet whispers. I thought maybe they were the exception....I had been told that these things were impossible. CI's were invasive, and they provided very little benefit. They were huge gambles that rarely ever work better than hearing aids.

In the meantime, we continued to use ASL. Miss Kat was doing well. We spent thousands of dollars and hours learning ASL. We were learning as fast as we could, but it still took time. We signed all the time. We encouraged our family to take classes at the Deaf community center. We invited them to community and school activities. Some came, some tried. The rest didn't. We were frustrated and angry. If they really loved Miss Kat, they would learn her language. We started to pull away, she was becoming isolated from her extended family. They didn't understand much of what she said, and she certainly didn't understand them. We spent most of our time acting as interpreters for her.

At the same time, she was not learning spoken language. In 5 years, she made no progress at all. Every year at her IEP we discussed how she failed to meet her spoken language and speech goals. She couldn't understand more than a handful of words. No one understood the things she said. When we were in public we translated for her at all times. We helped her learn to navigate without being able to use a shared language, and she was fairly independent, but other kids were starting to shy away from her, adults too.

Also, at school there were more complications. Miss Kat was smart and doing very well, but she did have delays. The school kept saying "It's just because you are hearing" and "She'll eventually catch up". Also, every time we discussed reading, all they would say was "She'll learn". When we pressed them on how, there were very few answers, but a lot of emphasis on memorization. (Miss Kat struggles with memorization as part of the effects of her birth experience.)

We were becoming disheartened. This wasn't how this was supposed to turn out! We were doing all the "right" things. They promised us that she would excel, promised that she would be bilingual....what was going on?

"Raised oral"

There is something I would like to discuss. I hear the term "raised oral" or "raised orally" thrown around a lot. And, I believe, most of the time, incorrectly. As a parent who is currently using the auditory oral methodology to teach her child spoken language, I would like to clear some things up.

Oral is NOT:

• Throwing hearing aids on a child and expecting them to be hearing.
• Putting a child in a mainstream school and expecting them to lipread all day.
• Doing nothing.

 Oral IS:

• Always managing amplification and insuring the best possible hearing.
• Actively teaching a child to learn to listen and understand the things they are hearing.
• Always monitoring all aspects of the child's language (receptive language, expressive language, auditory skills, and articulation) AND overall development, including social and emotional well being.
• Insuring that the child is always making adequate progress in all the areas of language (adequate being GREATER than one year's progress in one year)
• Always insuring that the child has access to well trained professionals in speech, language, education and audiology.
• Insuring that the child has access to and immersion in fluent, colorful, expressive spoken language.
• Insuring that the child has access to role models and peers that share their language.  

I made that list up, off the top of my head just now, I am sure their are plenty of things I missed! But my point is, that if a parent is allowing their child to carry a 5 year language delay, they are not "raising them oral", they are DOING NOTHING! If a parent gets the child hearing aids, and then does nothing, they are NOT "raising them orally", they are DOING NOTHING! Those are irresponsible parents, not oral parents. There is a huge difference.

People have asked me why I am ok with parents choosing oral only. And while I do advocate for both, it is true that I support parents who choose to do listening and spoken language only. The reason? Because it can be amazingly successful. I have seen many dedicated parents with children who grow up happy and do wonderfully. Why? Because they actually DO raise their child orally.

So, I'm asking, please do not lump irresponsibility in with oralism. They aren't even close to the same thing.

Chicken or the egg

I want to share a story I have been thinking about and ask for your opinions.

I know a little girl. She was born profoundly deaf. She was implanted with a cochlear implant at 18 months old. Her family chose to sign with her. She entered a voice-off ASL program at age 3. The program has no auditory therapy or support. She has spent 6 1/2 hours a day, 5 days a week in a voice off ASL environment. Her family also uses ASL as the mode of communication with her at home. She wears her implant *most* of the time, but certainly not all. She gets MAPing but not therapy.

This little girl is the ONLY child implanted in early childhood who I have ever met who could not understand spoken language through listening. So, here's what I'm wondering: Does she not understand spoken language because she exclusively uses ASL or does she use ASL because she couldn't understand spoken language??

A few cute things

This morning I was laying in bed (wishing that the creaking in Miss Kat's bed would stop and she would go back to sleep, but no dice!) and Miss Kat climbed out of her bed and made her way to the bathroom. I heard the door shut and then a minute later "Help! Help! The door is locked!". I run to the bathroom and it isn't locked, just stuck, so I let her out. She thanked me and went back to her room. It was sooooo cute to hear her call for help!

Also this week Miss Kat asked to get "french fries from Donalds" Woo Hoo! We went straight there! Also, this week at school it is "Spirit Week". Each day has a different theme and the kids are supposed to dress to theme. For example, Thursday was crazy hat day, Tuesday was backwards day, etc. So, Friday was supposed to be blue and white day. Well, Miss Kat came home from school Thursday afternoon and informed us that it was not blue and white day but "pajama day". That is impressive not just because of the vocabulary improvement (used to be called "sleep clothes") but also because that would have been said over the speakers and they wouldn'r have sat there and explained it, she would have had to pick it up...not too shabby!

Last night we attended a Deaf community event (one next week too). As soon as we walked in Miss Kat sternly told us (in voice) "No talking!" Well, that didn't last the whole time! While she used ASL with Deaf people, she still prefered to speak to us and hearing people (even though we signed the whole time). For "unknown" persons, she would speak and sign. Miss Kat was amazingly cute last night too. She decided that she was going to help out with one of the games. She would give the kids the tickets that they would earn. She would tell them "You're so beautiful!" (to little girls) or "You're are so strong" (to boys after they played) and everyone got a "Good job!" when she handed them the tickets or "So close!" if they missed. If they missed all the rings, she would say "It's ok, you still get one." I love my monkey so much.

1 month post #2

So, a few things have been going on so I figured it was time for an update.

We had Miss Kat's "one month post" MAPing, and it couldn't have come at a better time! Friday Miss Kat was saying "WHAT?? I can't understand you!" Thank goodness her appointment was on Monday! So, we headed up the two hours to see Miss Kat's audiologist. He had purchased a "Littlest Pet Shop" toy for Miss Kat to use in her conditioned play. She LOVED it!

This was the first appointment in which we MAPed both sides. It didn't work out so good! We did all the MAPing and then went into the booth to check it out. Miss Kat's audiogram was AWFUL! She wasn't hearing better than 35 db anywhere! It was low as 45 db in some frequencies! The audiologist worked nearly another two hours to get her levels where they should be. By the end Miss Kat was exhausted, but she was such a trooper. She worked so hard. So, when we walked out the door, we hoped that she was just tired and that after a few days, her levels would be where they should be.

So, a few days later, I asked her Aural Rehab therapist to put her in the booth and see how her hearing looked. It was still bad. The crazy thing was that it was her old ear that was struggling so much! It would be understandable if she hadn't adjusted to her new ear and it wasn't hearing well yet, but this is her old ear, she hears great with it! Well, the booth testing was still a mess. She wasn't hearing the Ling sounds any softer than 35 db....unacceptable!!

So, two days later we headed back up to the audiologist to try again. This time she was totally cooperative (again! what a sweetheart!) and she was reMAPed. We went in the booth and had the same issues. Argh! The biggest problem was that she was confusing "ooo" and "eee"....weird right? So, we looked it up and they do share some formants. They are differentiated at 1000 hz, so the audiologist worked his magic and fixed it. So, back into the booth...and again, she isn't hearing the tones well. So we switch to speech. Success!!!! Miss Kat was hearing the Ling sounds just fine and was able to discriminate speech as quietly as 10 db!

10 db is so much better than 40!!!! I love our audiologist. He is patient, good at his job and he REALLY cares about the kids. So, THANKS CACHE!! He got us back in in 2 days and spent a total of 6 hours making sure Miss Kat could hear! (Audiologists only care about the money my ASS)