Why we chose a CI

Miss Kat is lip syncing to her favorite song that came on while we were in a restaurant.

Wonder: The Movie

Many of you are probably seeing the trailer for "Wonder: The Movie" and as a parent of a child with a disability, I would like to tell you why I am so angry about it and why I don't find it inspiring at all.

The entire point of the book "Wonder" was showing that children with disabilities are exactly the same as children who are not. They are not "heroes" or sideshows to be pitied and prayed for. Auggie is powerful and brilliant, but he is also moody and struggles. The other people in the book are complicated and neither perfect or villains. That is what makes it so good.

So, back to the movie. Hollywood has cast a young boy, an excellent little actor, as Auggie. This child does not have a craniofacial syndrome. He has typical physical development. They have used make-up to try to "disfigure" the child's face to imitate Auggie's syndrome. This is outrageous. If you want to celebrate diversity in this world, you cast a child with a craniofacial syndrome. If you think that audiences "don't want to look at a kid like that" during the movie, you suck and have missed the entire point of the story. 

This is essentially able-bodied "black face". They have taken a role where it is a critical plot point that the child has a physical characteristic, and chosen to cast a child without that characteristic and used make-up to mimic it. This was a chance for children and adults with craniofacial syndromes to finally "be seen" and instead, they give it to someone who does not have this condition. 

Miss Kat loves the book "Wonder" but I do not think our family can support this film.

Dumbstruck

I don't want this to be negative at all because this is wonderful for this little girl, but watching this video is a little overwhelming. This little girl was a very good friend of Miss Kat's in Utah. She was in her class from 3 years old and up. This WAS Miss Kat. This is what her life would have looked like if she had not gotten a CI and if we had never moved to her oral school.

It isn't that this young woman can't communicate, or that it is bad that she signs, it is just that watching her...it is so shocking how different Kat's life looks.

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

Our Dinner Table

This is in response to THIS blogpost

I would like to tell you another story about a deaf child. This deaf child is named Susie. Susie didn't get a CI because the Deaf community told her family that Susie wasn't "broken". Susie used hearing aids, but they gave her almost no benefit. She couldn't hear any speech and she couldn't lipread (it is a very difficult skill to learn and Susie's family didn't want to waste their time on it.) Susie's mom learned to sign, it was easy for her. She was great with languages. She quickly learned from a community class and then spent thousands of dollars on community college classes. Dad learned some basic signs.

As Susie got older, she attended a bi-bi school for the deaf. In preschool she had the only hearing parents that signed. When Susie's family asked about her ASL development, they were told that she was "doing great for a child with hearing parents". When the family asked for more specifics, they were told that they couldn't provide them because there are no standardized ways to measure ASL acquisition. There was one, vague checklist.

Susie gained more ASL, and her family worked hard to stay ahead of her. They attend Deaf community events and even switched to a Deaf church. They didn't want to attend the church they had been because the people in the nursery were so negative towards Susie. They said things like, "What is she doing with her hands?" and "She acts like I'm supposed to understand her!" All of Susie's friends are from her Deaf school. She doesn't get to see them much though because they live so far away. Susie's extended family live very close by, and they love her very much, but they struggle to communicate. Her grandparents tried to learn ASL, but struggled, even with a plethora of free resources. Her great-grandparents live nearby too, but they say that they don't want to be left alone with Susie because they can't understand anything she says/signs.

Susie has three girl cousins her same age. When they were young, they were inseparable, but as they get older, they drift apart. Susie's cousins want to play elaborate games that they just don't have enough ASL to explain to Susie. They get signed up for dance and gymnastics classes, but Susie never gets invited to join in. She does attend one Karate class at a gym 45 minutes away from home because that instructor knows some ASL.

As Susie enters Kindergarten, she begins to learn to read. Susie's family is extremely involved in her education, so they ask how it is going with her learning to read. They know that literacy is a huge issue for deaf people, so they want to be pro-active. The teachers say she is doing great for her age. When pressed about HOW Susie will learn to read, the school just answers, "Oh, she has a great first language, she should be able to learn a second language. Susie's family continues to push for more information. They ask, "Since she can't use phonics, (since she has no sound/letter association) and knows no English vocabulary, HOW will she learn to read?" The school finally admits that Susie will have to use sight words. The plan is to have Susie memorize enough words to become a fluent reader??

Susie family thinks they have made a terrible mistake.

This was our experience having a Deaf child who used ASL. It was not all sunshine and roses.

As for today,with her cochlear implants, things are completely different for our daughter. She understands us well, without lipreading, even in a noisy restaurant. We work hard to ensure that we speak one at a time, and "never mind" or "it doesn't matter" are forbidden phrases in our family. Miss Kat has friends who live close by (she had 5 friends sleep over on Friday night) and her relationship with her extended family is amazing. Most important (in my opinion) is that Miss Kat is also a veracious reader. She is at or above grade level in all her academic areas. She is in the Junior National Honor Society and she is starting a teen book club at our local library.

This is not who she would have been without her CIs.

Hearing First Interview

Making Books Come Alive for Young Children - Interview with Melissa Jensen

Last month was Literacy Month and one way we’re celebrating is by recognizing how we can use books to achieve specific goals for each child. Overall, our philosophy is that every session should include a book. Natalie OHalloran interviewed Melissa Jensen, Teacher of the Deaf at ******* to hear how they integrate books and coach parents along the way. Read on for suggestions about incorporating books into classroom activities and coaching parents.

NO: How do you integrate sharing a book or book reading in your classroom?  How do you make it ‘come alive’ for your kids?

MJ:  I am a classroom teacher, so I use books a lot. I have a literacy "theme" for the month and create my activities around it. Last month was "Go Dog Go" so I read bits of the book, acted it out, created craft activities related to it and so on. For acting, I had each child take a turn sitting in a car and "Going" with another student holding up a GO sign and telling them to GO. Then the student would change to STOP and tell them to STOP. Another example from that book is having them put on hats and ask, "Do you like my hat?" and answer, "No, I do not."

Another book I used was, "The Itsy Bitsy Snowman". It was great for acting out. I built a pretend hill and we would sled down it, and then have a snowball fight, and then build put the pieces back on our snowman.

NO: What parent coaching strategies have you found to be helpful to equip families to share books with their child?

MJ: I show parents that you don't have to read all (or really ANY) of the words. I have also sent home sticky notes with questions in the book to help the family get started. I have had the fortune to have each of my parents share a book in class so there has been opportunity to coach. I am also lucky that I talk to every family at least 3 times a week. I will mention to them what I am working on and ask questions about strategies. Just today I was explaining to a caregiver about wait time and how critical it is for this particular child.

NO: What do you do in your classroom when you have a reluctant reader?

MJ: I have some little ones who are not yet ready for a traditional "story time" so I choose a lot of books that we can act out or that have movements built in. I use VERY short stories, and multiple senses and presentations. I also sub in the students as much as possible. For example, this week we are doing "Humpty Dumpty". I have a felt board Humpty, a book version, and I use their photos to "fall off the wall". Then, I give each student the opportunity to come sit on a big, red block, fall off, and try to get put back together.

NO: What are some of your “tried and true” books that are your “go tos” and why? Do you have some specific books for specific ages or goals?

MJ: As I said, I used "Go Dog Go" last month. I also used "The Itsy Bitsy Snowman". It was great for acting out. I love all the Karen Katz books for very young children. They work great for eliciting very early language like "open" or even "mine" and prepositions.

Thanks for sharing, Melissa!

Miss Kat's words about work and self-reliance

Hi! If any of you don’t know me, my name is Miss Kat. My family and I moved here 6 months ago. I have been asked to talk about work and self-reliance.

Self-reliance means that you can depend on yourself and don’t need others to do things for you. In the scriptures, Heavenly Father tells us that He wants us to become self-reliant. The Church Handbook of Instructions says: “The Savior has commanded the Church and its members to be self-reliant and independent. To become self-reliant, a person must work. Work is physical, mental, or spiritual effort. It is a basic source of happiness, self-worth, and prosperity. Through work, people accomplish many good things in their lives.” So, to become self-reliant, we must work.

I want to tell you a story about how I did a lot of hard work so I could become self-reliant. When I was 5 years old, I was completely deaf...well, I’m still deaf, but I am deaf with cochlear implants now. Back then, I couldn’t hear or talk at all. When I was 5 1/2, I got my first implant. While the implant helped me to be able to hear, I still didn’t know any words in English! I knew sign language, but now I was able to hear people speak. Problem was, they spoke in a language I didn’t know.  Imagine you moved suddenly from one country to another when you were almost 6. That was what it was like for me. I had to learn to hear and learn a whole new language. I started speech therapy twice a week, plus my mom started working with me all day, everyday. Soon, I was learning so fast that I couldn’t attend my signing school anymore and that’s when we had to move to St. Louis.

I worked hard at my new school. Every day we worked on speech, language and listening, and I worked outside of school with a speech therapist too. I was making a lot of progress, but I had started 6 years behind all the other kids. After 5 years, I was finally ready to graduate. I gave a speech that I wrote myself and I gave it all in spoken language. I now attend school with only kids who can hear and I am just like any other kid my age, just ask my Young Women’s leaders!

If I had given up on learning English, I would have never been self-reliant. I would have needed interpreters for my entire life. I wouldn’t have been able to go to school without help, ordered a meal at McDonald’s or given this talk! I also wouldn’t have learned to read like I can now and I would have missed out on one of my greatest talents and something I love!

Heavenly Father could have made me hearing and I wouldn’t have had to work so hard, but He wanted me to learn self-reliance. I wouldn’t be the same person that I am today if He had healed my ears. Heavenly Father blessed me in a completely different way. Sometimes, I don’t think that it is fair that I am deaf, but other times, I am very thankful that Heavenly Father made me the way I am and I know that hard work and self-reliance can bring blessings to your life, too.

I say these things in the name of Jesus Christ, AMEN.

Latest Testing

So, Miss Kat has been out of her oral deaf school for 18 months now and we just got the results of her most recent comprehensive speech, language and listening testing. It was done privately because we do not utilize SLP services through the school district. (Miss Kat gets only itinerant teacher of the deaf services to work on pre-teaching academic vocabulary and self-advocacy.) She is working very hard and is doing amazingly well!

• The Listening Test: Adolescent- This test assesses a child's ability to gain information through orally presented language. During this assessment various situations are described to the child and the child is asked to respond to questions about the main idea, details, drawing conclusions, inferences and comprehension about the passage.
• Main Ideas- Scored within the normal range (Miss Kat's highest score)
• Details- Scored within the normal range
• Reasoning- Scored within the normal range
• Vocabulary and Semantics- Scored within the normal range
• Understanding messages- Scored within the normal range

• Test of Auditory Processing Skills-3- This is an assessment of auditory skills necessary for the understanding of spoken language.
• Word Discrimination- Scored within the normal range

• Test of Semantic Skills: Intermediate- This assessment evaluates a child's semantic and vocabulary abilities by asking a variety of questions about a picture scene.
• Identifying Labels- Scored within the normal range
• Identifying Categories- Did NOT score within the normal range (just below)
• Identifying Attributes- Did NOT score within the normal range (Kat's lowest score)
• Identifying Functions- Scored within the normal range
• Identifying Definitions- Scored within the normal range
• Stating Labels- Scored within the normal range
• Stating Categories- Did NOT score within the normal range 
• Stating Attributes- Scored within the normal range
• Stating Functions- Scored within the normal range
• Stating Definitions- Scored within the normal range

• Oral and Written Language Scales: 2- This assesses a child's use and understanding of vocabulary and social language. It includes use of idioms, drawing conclusions and communication in real life settings.
• Language Understanding Section- Scored within the normal range
• Language Usage Section- Did NOT score within the normal range 

• Goldman-Fristoe Test of Articulation- This test looks at the articulation of specific speech sounds at the single word level.
• Miss Kat made two articulation errors. Since she is older than age 8, that is considered outside the normal range. (No errors are allowed after 8.)