Thursday, October 17, 2013

Conversations with a Cuer: My Mom

My mother, Fran Pinnix, is in town to enjoy some precious time with her granddaughter so I took the opportunity to interview her about her experience raising me with Cued Speech.

AC: How did you hear about Cued Speech?

FP: Completely by accident. You had just been diagnosed as profoundly deaf. We left Raleigh ENT and I was so devastated. I left crying. You were still asleep from the drugs and I cried and cried. I went to see your Aunt Diane at her work. I must have been a mess because everyone in the office left us alone. So we cried together.

Raleigh ENT felt so sorry for us so they had a parent call us to encourage us. She mentioned that they were using Cued Speech and oral education. When I first started learning about Cued Speech, I heard bad things being said very negatively about Cued Speech. But I thought in order to make a fair choice, I had to check out Cued Speech first. That's when I met Mary Elsie Daisy. We went to the Cued Speech Center in Raleigh.

AC: What was it like meeting Mary Elsie Daisy, the first cue mom, for the first time?

FP: I was so impressed with her. and I thought it was too good to be true. Everything she told me about her daughter I wanted for you. So I asked to meet her daughter and she threw a social with drinks and snacks.

FP: Her daughter and I talked together like you and I do. I understood her and she was living independently and going to college and then I decided if she could do it, you could too.

AC: In Johnston County, which is a rural county east of Raleigh, what was the deaf education like there? You told me something about graduation rates.

FP: Terrible. Terrible. Terrible.

When I found out you couldn't hear, I spent the day at their deaf classroom, they called it mainstreaming, which it was not. It was self-contained in a mainstream school. The teacher had kindergarten through fifth grade in one classroom. They spent forty five minutes each morning doing speech skills and their speech was good, but academically they were way behind. That's five hours of academics they were missing out. One child left to go to go to math so that made them "mainstreamed."

At the end of that morning the teacher asked me if I had any questions or comments, so I had made some notes. I asked her how many had graduated and she got mad. She said that she thought maybe one. I said "that's not good enough."

They wanted you there because the more children they had, the more funding they had. You went to speech therapy in the basement of the school. In one of the meetings, the special education director said "we are so proud of our special needs children." And I said "Then why are you hiding them in the basement?"

AC: You sure were feisty, weren't you?

FP: I got so mad because we went a stinky basement for speech. I would get mad and they would say nothing. I was on the advisory board and walked in on a conversation and overhead the director say on the phone, "It's an educated parent. We need to handle this carefully." At that point I knew then I was going to be an educated parent, otherwise I would be taken advantage of. By being involved, I stayed on top of things.

I had a teacher tell me that the best thing I could have done for you was to leave Johnston County.

AC: That's saying a lot about the state of deaf education back then... What do you remember of my testing while in Johnston County?

FP: At 3 years old, you were tested to be at 18 months old language-wise, which I cried and cried about. But you were on target because I had exposed you to Cued Speech at 18 months, so you were making gains. I took comfort in the fact that you never lost ground. You would gain a few weeks each time, and six months later you were making big gains.

AC: I remember pictures of me at the General Assembly in Raleigh. Why were we there?

FP: We lobbied for every child being tested at birth hearing loss and we lobbied for educational support.

AC: That's interesting because I live in Colorado, essentially the birthplace of universal newborn hearing screening. 

AC: Why did we move to Wilmington?

FP: We were knew we had to find something better than Johnston County and we were going to put you in the oral program in Raleigh, but we had to be living in Wake County because it was funded by the county. Then it just so happened a job opened up in Wilmington for your dad. By then we had visited the Payonks and the Nelsons (cueing families) and we had visited the schools. We knew that the public school system would be good for you.

AC: We've talked about how well of a test-taker I am and you contribute that to all the tests that I took.

FP: You were tested so much that you didn't stress over taking tests as you got older. I do remember one time where you used the word "light" for "lamp" because I would say "turn off the light." When you said that, I kicked myself and from that point on I would always cue different words to expose you to more vocabulary.

AC: There was a lot of tension between you and my first resource teacher in Wilmington. What was up with that?

FP: No one believed that you could read and understand as well as you did. you had to prove that you could understand what you read. You started reading at five years old. Your first resource teacher never believed it. She thought you were just picking out the words.

AC: I often make the statement that I went through first, second, and third grade in a matter of a calendar year. How did that happen?

FP: You went to private kindergarten first, and then regular kindergarten. Then you went to first grade. At that point I was told that all the teachers thought it was best to hold you back. I later learned that was not true. Marilyn became your new resource teacher. You started showing behavior problems and she thought it was because you were bored since you had never done that before. She knew right away that you were very bright. We put you in 2nd grade in March. You were so scared that you wanted to go back to 1st grade, but I told you to give it two weeks or you could go back. Your teacher believed you could do it, otherwise I would have not suggested it.

AC: When I went into 2nd grade, I remember clearly one of these ah-ha moments where I discovered the concept of place value in terms of ones, tens, and hundreds. However, what was my math skills like at that point?

FP: The 2nd grade teacher said you were on target except in math, so every day we went to the picnic table and worked on math and I remember so well you looked up at me and I knew then you got the math concepts and I knew then that's why teachers teach. It was so rewarding to see the smile on your face.

AC: At this point I was fully mainstreamed with cued language transliterators. Were there any teachers that had difficulty with having a deaf student?

FP: Your 4th grade teacher was scared of you because she never had a deaf student. So I would tell her to treat you the same as others. I said that not to let you get by or the other kids will resent you. I told her to be tough on you. She then realized how smart you were and pushed to get you in the Academically Gifted (AG) program and you got right in. She became your biggest advocate, Ms. Ward. Every time I see these teachers, I thank them.

AC: And I know I was never bored in the AG classroom, that's for sure. I was lucky to have a speech therapist who cued early on in Wilmington, but then I ended up having different SLPs over the years. From that point on my opinion of speech therapy basically went downhill and I basically rebelled at the fact that I had to do therapy before or after school. What was your thought process in that?

FP: You had one speech therapist who made the mistake of pulling you out during academics and you had missed something. I asked her if she had read your IEP. and she said yes, and then I said "you know you made a big mistake." You were not to be pulled out.  She said she couldn't do it any other time of her schedule. "You have to do it because you are violating the IEP and if it happens again I will take action." We didn't want you to miss any academics so you had speech before or after school.

AC: For a period of time you were part of the organizing committee for Cue Camp Cheerio. Tell me about that.

FP: I was the director of the children's program at Camp Cheerio. It was wonderful for family support and educators. I always learned something new. We had presenters, guest speakers, and educators that came to camp. I gained good support from educators who I knew to turn to get things done at the state level, not just the local level. I gained resources I didn't have.

AC: Tell me about Dr. Cornett What do you remember of him?

FP: What I remember the most is the auto cuer and asking him if I should learn to sign. He said no and that I need to concentrate on all the language you've missed and and focus on getting all that language in. I also was told to teach you good listening skills. Because of that, we played listening games. I would stop and say, "I hear something. Do you hear something?" Then you would say, "Ma, I hear something, what do I hear?"

AC: How would you describe Dr. Cornett as a person? What was it like being in his presence?

FP: I would say he was a genius. He saw that deaf kids were not doing well in deaf colleges and felt there had to be a better way. He wanted the deaf kids to get the same information hearing children got so he came up with a way to do it. It was brilliant. He thought outside the box.

AC: What about Gallaudet Summer Family Camp?

FP: It was fun, but we were warned when we got there that students would probably be rude to us because they didn't believe in what we were doing.

AC: Funny because 15 years later I remember asking Dad if I could go to Gallaudet and he said "you don't want to go there, you won't like it." I accepted that as a matter of fact, but didn't really understand why until later on when I would learn about the politics there. At that time, he was right because of the fact that I never signed.

AC: Let's talk about the cochlear implant.. what was the thought process for you in deciding to go through with the surgery?

FP: In the beginning it was so new to children because it had just been FDA approved two years prior. I was uncertain because audiologists was saying no, you didn't need it. You had good listening skills. But Dr. Kraus said that yes, you did need it since your hearing loss was so profound.

AC: Why was there such a disconnect between the audiologist's opinion and the doctor?

FP: You were using your hearing aids very well.

AC: Now that's interesting because I honestly do not have any memory of the hearing aids, yet when I got the cochlear implant the memory of my activation is so vivid. What was it that made people think I had good listening skills with the hearing aid, despite my profound hearing loss?

FP: When you had your hearing aids, you had very bad speech, but you were doing so much better than most because you were learning to listen.

AC: Was it speech perception or sound perception?

FP: Both.

AC: After the activation, what did you see in my listening and speech?

FP: Really interesting. Right after we were told not to expect anything for about a month. But right after you got it, we were going somewhere and I dropped a bag of trash in an empty dumpster and you jumped. And then we were in the car with the sun roof open and the radio going and you started laughing. I asked, "What's so funny?" There was a dog whimpering in the car next to you with all the noise and you heard it. And then we went to Poplar Grove Plantation and there were the chickens. You were laughing because you heard the chickens. You had never done that before.

AC: I remember seeing a note on a 6 month audiology evaluation that said "WOW! 50% increase in speech intelligibility." What was that all about?

FP: Dr. Kraus, being a doctor and being everything scientific, said you had jumped one whole level in a short period of time. His reasoning for that as a scientist or a doctor is that maybe some of nerves that appeared dead had completely regenerated.

AC: That's interesting because that would be the precursor to today's current thinking of brain plasticity. When did I start being more dependent on audition and less dependent on Cued Speech?

FP: When you were in high school. your freshman year you wanted to drop the transliterators, which scared me to death. As a parent, it was comforting to known you had one. I also knew as a young adult, you wanted your independence. So we would give it a grading period and see what happens.

You actually did better. You had better grades instead of them being worse. You were so determined to do it on your own and you were watching and listening to the teachers.

AC: How did you feel when we stopped going to cue camp? I had my reasons including driver's ed, but what was your take on that?

FP: We had gone fifteen years in a row, but it was time to take a break. You had school going on and driver's ed and other things that you didn't need to miss.

AC: I remember that I basically felt like I was rejecting the deaf community, including Cued Speech itself. I asked you not to cue to me anymore. How did you respond to that?

FP: It was hard at first, after so long. But at the same time it proved you were not so cue-dependent.

AC: Now looking back, I might have done things differently had I realized the impact of Cued Speech on my access to instruction, especially in AP Calculus. That was one time where I definitely could have benefited from transliterators.

What is your advice for new cueing parents that are struggling with cueing and worried about their children's language growth?

FP: Someone told me the easy way out is not always the best, and that's true. Sometimes you have to work at it a little longer and a little harder for it to become easy again. It's hard in the beginning, but easy in the end.


Caroline Eacho said...

Wow! Reading that took me way back in time. I was there for so much of that, right up through your cochlear implant.
Just so you know, in graduate school for me, cued speech was not really talked about much. I would say it had a bad reputation, but I think it really had an unknown reputation. I learned cued speech for you, Aaron, because your mother and father begged me to. I am thankful for the education that learning cued speech gave me. It was the best possible decision anyone could have ever made for you!!!! I am thankful that I had the privilege of being your first speech therapist.

Judy DeLong said...

I've known you both for so long, but never knew all those details. I'm glad you did this interview, because it made me remember some of my experiences with Chett that were very similar. Thanks!