Parent Education – Hearing Sonya Rose

Tackling Hearing Loss-Related Literacy Challenges Early

We are tackling hearing loss-related literacy issues head on by having Sonya learn to read early! Check out what we are doing and tips from hearing loss professionals on how to foster strong literacy skills at home and at school.

This past week, Sonya started to learn to read! Well, actually, she started learning her letters, but once a week moving forward she will work with Dana Selznick, education specialist at the Center for Hearing and Communication, to work on literacy skills.

Like other children with hearing loss, Sonya is susceptible to having difficulties in all areas of academic achievement, especially reading and mathematical concepts. According to Reading Rockets, a national literacy initiative, the effect of hearing loss on academic achievement is distressing:

Children with mild to moderate hearing losses, on average, achieve one to four grade levels lower than their peers with normal hearing, unless appropriate management occurs.
Children with severe to profound hearing loss usually achieve skills no higher than the third- or fourth-grade level, unless appropriate educational intervention occurs early.
The gap in academic achievement between children with normal hearing and those with hearing loss usually widens as they progress through school.

Thankfully, extra support for children with hearing loss can significantly improve these effects. Under Dana’s guidance, we will work to help Sonya learn to read hopefully before entering kindergarten.

Our first reading lesson involved identifying the letters of the alphabet, placing those letters on an “alphabet train,” and coordinating images and sounds with letters.

Here is Dana teaching Sonya about the letter “B”. When asked what was pictured, Sonya responded confidently, “wine!” haha

In addition to learning letters and the alphabet, we spent a portion of the hour reading Elephant and Piggie books together. To Sonya’s delight, Dana has the plush Gerald the Elephant and Piggie set. Sonya held Piggie and I held Gerald as we acted out the story. It was a great way to integrate play, listening, speech and language along with reading. (I just bought the plush set for Sonya’s upcoming birthday, so we can reenact this at home too!)

We have been instructed to work on our letters and sounds every day at home. After our lesson, Dana gave us print outs of the letters we worked on. On Thursday, Sonya spent time coloring each letter. The next day, we played a game using the letters from the Melissa & Doug Magnetic Chalkboard. I presented Sonya with five letters and asked her which one makes the “b” sound, “a” sound, etc. Doing something different every day to keep it interesting is critical. I am perusing Pinterest for other ideas and will share them if helpful.

Dana recently wrote a blog post for CHC’s “Back to School Buzz” on this topic, and suggested parents follow the below tips to foster strong literacy skills at home and at school:

Literacy learning tips for children with hearing loss according to Dana:

Nightly Reading – Encourage nightly reading at all age levels by establishing a reading routine and sticking to it. You’ll promote language skills while creating a special nightly experience. Be sure to discuss the book you’re reading to aid comprehension and point out words and images as you go along. Reading charts can keep track of your progress and help instill a love of reading.
New Vocabulary – Be sure to regularly introduce new stories so that your child encounters new sounds and vocabulary. Exposure to story lines encourages the use of new vocabulary that children may not encounter in their everyday language.
Book Recommendations – Dana recommends visiting the Scholastic website and searching titles by age group. For preschool and elementary students, She really likes the “If You Give” series by Laura Numeroff and the “Little Old Lady” series by Catharina Ingelman-Sundberg. You can chose titles that focus on a letter sound that your child’s therapist is working on, such as “If You Give a Pig a Pancake” for the letter sound “p”. Having your child repeat back sentences and dialogue from the story fosters sequential memory.
Technology Considerations – It’s vitally important to make sure your child has maximum access to sound at home and in school. CHC’s Back-to-School Audiology Tips by pediatric audiologist Anita Stein-Meyers will help you and your child’s teacher identify and fix common problems that can occur with hearing technology.
Advocate at School – Reach out to teachers at the start of the school year to make sure they understand your child’s listening challenges in the classroom and take appropriate action.

We are so excited to begin this journey! We even bought Russian letters so that Sonya can do Russian reading work with her Russian-speaking nanny Nina!

Hearing Loss and Cerebral Palsy: What Parents Need to Know

Sonya’s hearing loss is non-syndromic, meaning it has no other symptoms aside from hearing loss, but for many children this is not the case. Alex Diaz-Granados, an editor at Cerebralpalsyguidance.com (an amazing resource for parents of children with cerebral palsy – by the way) lives with cerebral palsy. He penned the below guest column, which resonated deeply with me, and I hope for you too. Despite a different diagnosis, parent education and connecting with other families has been critical for us – and it’s why I started this blog!

Hearing Loss and Cerebral Palsy: What Parents Need to Know
By Alex Diaz-Granados

Studies have found that the rate of hearing loss in children born with cerebral palsy can be as high as 13 percent. For parents, to find that your child not only has this neurological condition, but also has complications like loss of hearing, is a pretty big blow. Hearing loss is just one of the possible complications of cerebral palsy, but it is a common one. Here are some important steps to take after your child gets this diagnosis:

Learn everything you can about your child’s hearing loss
Knowledge is power and the more you know, the more you can help your child. Children with cerebral palsy who also have hearing loss have one of two types:

Conductive hearing loss means that sounds cannot get through the ear canal from the outer to inner ear. There is some kind of blockage or a problem with the ear bones. This is sometimes also called glue ear or otitis media with effusion because it often occurs with fluid buildup.
Sensorineural hearing loss occurs when there is a problem with the auditory nerve or the hairs in the inner ear.

Either type of hearing loss may range from mild to severe. Mild cases of conductive hearing loss may clear up, but may also be corrected with surgery. The damage that causes sensorineural hearing loss is permanent, but hearing can be improved with hearing aids and cochlear implants in many cases.

Talk to your pediatrician about treatment options and specialists
Reading up on everything you can about hearing loss is a great first step. Armed with that knowledge, you can then discuss with your pediatrician what your options are. You will likely need to take your child to one or more specialists, so find out what your pediatrician recommends and get started on appointments with audiologists, otolaryngologists, and others. The sooner you find out the kind of treatment your child will benefit from, the sooner you can implement it and help him hear better or learn to live with a hearing deficit.

Reach out and talk to other parents
Talking to other parents of children with hearing loss is so important in coming to terms with your child’s hearing loss and cerebral palsy. Reaching out for information and support from the people who have already been through what you are experiencing is so powerful. A quick search online will turn up support groups for parents and families of children with disabilities, including hearing loss. Join a group and start asking questions. You’ll get plenty of good advice, and more importantly, the sense that you can do this and that your family is not alone in this struggle.

Remember that your child is a child first
When you keep in mind that your kid is just a kid, like any other, you can better teach him not to let his disability define him. He may have hearing loss, but first and foremost he is a kid who will learn, grow, and explore. It’s up to you how you guide him as he grows, and how much emphasis you place on his disability. If you teach him not to be limited by it, he won’t be.

About the author: Alex was born premature in a Miami hospital in 1963. He suffered irreversible brain damage when a nurse in the hospital’s maternity ward forgot to turn on the oxygen supply. He has overcome many physical and emotional obstacles. He currently serves as editor at cerebralpalsyguidance.com and as a freelance writer for Examiner.com.

Thank you, Alex, for sharing this valuable information!!

A Unique Fish

“She is so adorable!” Our neighbor exclaimed as we held open Sonya’s trick-or-treat bag. “What is she? Some sort of robot?”

“She is a fish,” I replied.

“Well I just love the blinking lights,” she said pointing to Sonya’s processors. “A unique fish you are!”

“Yes she is!” I laughed.

Deciding when to explain to people that Sonya is wearing cochlear implants has never been easy for me. Over the summer, in Central Park’s Great Lawn, a young girl sitting nearby on a blanket pointed to us and sneered, “What are those ugly black things on that baby’s head?” Her dad quickly told her to “shut it.” I didn’t respond. Instead, I packed up Sonya’s toys, rolled up our blanket and left. I was too upset. My biggest fear was that Sonya somehow sensed my emotion and thinks that it was because I was ashamed, which is not the case. I just didn’t know what to say.

From that moment on, I knew I needed to come up with some sort of response. I decided to ask other parents in my situation, and here are their suggestions.

As soon as they can understand, teach your child the language they need about themselves and in a loving way. For example, I should plan to use the word “deaf” and “cochlear implants” around Sonya – and explain that they are just a part of who she is. Explain to Sonya that she is different, but that we all have differences.

Teach your child to use these words as a defense against ignorance. Unfortunately, what the girl in Central Park said will not be the last derogatory remark Sonya will hear in her lifetime. But if I do my job and ensure she is as well-adjusted as possible, when someone says to Sonya on the playground “You’re deaf!” she will hopefully respond with something like, “Yes – I sure am. I use my CIs to hear just like you use your glasses to see.” Ultimately, I hope Sonya is able to teach people to open their eyes and to learn.

Speak up, but not in a defensive way. This past weekend, Sonya and I visited a bookstore where I overheard a child ask her mom what Sonya had on her head. “Oh, I am sure that is helping the baby in some way,” her mom responded. I decided that this time, I would say something. I turned around and asked nicely, “Oh, do you have a question about what she is wearing? I know it is different from what you have seen before, right? These help my baby to hear.” I then removed one device and let the child look at it more closely. The little girl was interested – as was her mother. I realize that very few people in the world have CIs – they are not something that people typically encounter.

In some instances, it just makes sense to say nothing. I have noticed that far more often than not, people are too polite to say anything. I never force the conversation. I only bring it up when it emerges organically.

Find humor, when possible. A question asked in a mean tone doesn’t always warrant a serious response. One parent at Sonya’s speech therapy encountered a rude person who one morning on the elevator asked curtly what those things were on her child’s head. Something about the person’s tone and the fact that it was just too early in the morning to dive into a lesson about the amazing benefits of cochlear implant technology led this parent to simply respond with, “Oh those? they are headphones. She just loves to listen to Howard Stern in the morning.” I love this.

I would love to hear other ideas for responses as well. Do let me know if you have any suggestions!

Strengthening the Weakest Link

New York City offers excellent care for children with hearing loss. Unlike many families, we were notified of the possibility of hearing loss well before Sonya was even born, and since that time have been able to proactively deal with it. We are surrounded by the finest surgeons, audiologists and speech therapists. Yet, this will not guarantee that Sonya will be successful in acquiring language. While a percentage of Sonya’s success will be based on the care she receives at the Center for Hearing and Communication and the Cochlear Implant Center, the most important factor determining how Sonya fares will be dependent on the work we do at home.

It’s a frustrating position to be in, as I am the least educated/skilled person in this arena, and yet, the greatest weight is placed on me — especially since Yan works and I am at home. And recently, despite the hours I have already put into helping Sonya develop speech at home, I have felt like I may be the weakest link when it comes to her ability to acquire language.

While Sonya has made leaps in terms of showing us that she hears all types of sounds, she is producing many of the same sounds she did prior to our trip to Italy. Still, I feel thankful and proud that she has come as far as she has. In the video below, Sonya responds to us whispering her name!

So for the time being, I am working to educate myself on ways to help Sonya acquire speech. The following list are things we are doing already on a regular basis. Also below is a list of books I am currently reading – which I thought might interest other parents in our situation. Look out for my upcoming post on how we are applying the suggestions in these books as well.

Ways to Promote Speech

1. Give opportunities for Sonya to ask for what she wants. If a favorite toy is out of reach, wait for her to vocalize that she wants that toy before reaching for it and handing it to her.

2. Imitate the sounds and facial expressions she makes.

3. Encourage her to use different vowels and speech sounds by linking sounds to toys and being consistent. For example, when we play with an airplane, we make the sound “aaaa” and when we play with a car, we make the sound “beep beep.” Eventually, Sonya will (hopefully) associate these toys with that sound.

4. Encourage Sonya to stop and listen to environmental sounds. When the phone rings, doorbell chimes or tea kettle whistles, we stop what we are doing and point to our ears. Encouraging Sonya to stop and listen to the sound – and then identify what the sound is we are hearing.

5. Narrate what is happening. Use simple language to describe the events as they are happening throughout the day. This is especially tough for me. Naturally I am an introvert – but I am forcing myself to become a chatty person.

6. Sing. We sing all day long. I try to add gestures to songs to keep it interesting/entertaining.

7. Read Baby Books. I have been told to choose books that have large pictures and are not too detailed. Brown Bear Brown Bear What Do You See – is a favorite right now. I ask lots of questions on each page, such as “what is this?” “where are his eyes?” “Where is his nose.” Sonya loves to read and typically wants to do so at least a few times a day. She doesn’t always make it through a book, however – and I don’t force it.

Books I am Reading: