HLAA Walk4Hearing 2008

The Walk4Hearing is a nationally coordinated effort sponsored by the Hearing Loss Association of America. The HLAA is the nation’s foremost consumer organization representing people with hearing loss. HLAA impacts accessibility, public policy, research, public awareness, and service delivery related to hearing loss on a national and global level. The HLAA mission is to open the world of communication to people with hearing loss through information, education, advocacy, and support. The Walk4Hearing is the HLAA's primary way of generating funds and raising awareness about hearing loss and related issues.

We learned of the Walk4Hearing through the Ohio Chapter of AG Bell. Our chapter is helping to sponsor the walk and will be volunteering on walk day. In addition, many members of the Ohio Chapter of AG Bell will be participating in the walk, including Drew! There is a kick-off luncheon at Dave and Busters on Saturday April 12 at 11:30 am. There will be a brief speech made at the luncheon about AG Bell by...ME! I'm honored that I was asked to represent the Ohio Chapter of AG Bell at this event and am excited to help kick off a wonderful event!

The 5K walk in Columbus, Ohio will take place on Saturday, June 7th at 10:00 am. It will be held at Beekman Park on the Ohio State University campus. We have created a team for the walk called Turn On My Ears! Please join our team! You can make a financial contribution, if you would like, or you can walk with us as part of team Turn On My Ears! It is a great way to raise awareness about hearing loss. Drew hopes to see you there!

Lance Allred Cavs Update

On Tuesday I posted about Lance Allred, the NBA's first deaf basketball player. Since then, I ran across another article on him which detailed his struggles in getting to his sport's highest level.

Most of this article details the difficulty that "minor league" basketball players go through in scraping up enough money to live (and mentions he has been signed to a second 10-day contract), but one piece stood out.

Allred is the former East High School player who went on to the University of Utah, where his basketball experience was ruptured by rough treatment put upon him by former Ute coach Rick Majerus. The 6-foot-11 center, who had overcome physical ailments, severe hearing impairment, obsessive-compulsive disorder, and a family environment that, for a time, was polygamous, had been verbally abused, called, he says, by his former coach a "deaf, dumb f---" and a "disgrace to cripples" in front of his teammates.

The article goes on to discuss how his coach Rick Majerus (a quite famous basketball coach) resigned shortly after. I had no idea.

It's unfortunate that this type of discrimination goes on in general, but it's even more despicable that this coach said these derogatory remarks in front of his teammates. I'd love to hear the coach's version of the story, but assuming it is true, it really makes me lose a lot of respect for Majerus.

What do you think? What's the worst thing you, a friend or family member has been called.

Deaf NBA Player Has Cochlear Implants

Lance Allred was just signed to a 10-day contract by the NBA's Cleveland Cavaliers. While a fantastic accomplishment in itself, his stint in the NBA is even more spectacular considering he is deaf.

Lance has had around a 75% loss of hearing since birth, but now has (bilateral?) cochlear implants. In one article he described his implants as helping him hear most sounds, but when sounds are coming from behind him, sometimes he misses it. The result, he said, was that he'd been "wiped out" on several screens while playing basketball. Anyone who's played knows what that's like!

I'm not clear on whether Lance has one implant or two. I'll try to keep an eye out for him during the next few Cavs games, but if anyone knows for certain, please let me know.

Congratulations to Lance!

Speech-Language Pathology Semi-Annual Evaluation

Drew has attended two, hour long, therapy sessions a week since his cochlear implants were activated in June of 2007. He sees a teacher for the Regional Infant Hearing Program, a therpist from the Auditory Oral Children's Center and an SLP from Nationwide Children's Hospital. We attend therapy to learn ways to stimulate Drew's communication skills, but mostly it is nice to have therapists that can gauge how well Drew is hearing and how he is progressing. (As a side note, we will be adjusting Drew's therapy begining in June to one therapy per week.)

Drew's SLP completed his semi-annual evaluation this week. It's hard to believe that time is going by so quickly. Drew has been hearing for nearly nine months now - he's almost been hearing for half as long as he has been alive! Wow!

Drew's progress has been amazing. (I knew it was possible, but when you are wading through all of the doctors appointments and pre-surgical consults, it is hard to believe sometimes that you child will hear! For those in that place right now - it will happen! Hang in there!) The transformation we have seen, even in the past weeks, is remarkable. But it is really nice to see the progress on paper. Below is the report our SLP conducts every six months. Drew met all of his short term goals. Go Drew!

Treatment Plan: These goals have been established to develop the necessary performance components required for functional skills typical of Andrew's age or developmental level.

Short term goals:

Using right cochlear implant, and given no visual cues, Drew will respond to environmental sounds for 8/10 opportunities. Met 9/13/07.

Using left cochlear implant, and given no visual cues, Drew will respond to environmental sounds for 8/10 opportunities. Met 9/13/07.

Using right cochlear implant, and given no visual cues, Drew will respond to voice/speech sounds for 8/10 opportunities. Met 12/13/07.

Using left cochlear implant, and given no visual cues, Drew will respond to voice/speech sounds for 8/10 opportunities. Met 12/13/07.

Monitor ling sound recognition for both ears and each ear individually. Goal is ongoing; Drew currently detecting all ling sounds at a distance of six feet with background noise.

Drew will discriminate between vowel and consonant differences in same length words. Ongoing.

Drew will begin to show a conditioned play response when presented a sound. Drew showed on 2/15/08 two independent uses of CPR. Drew is emerging the skill of participation in conditioned play response.

Drew will produce voicing of any vowel on demand for 6/10 opportunities. Met 10/18/07.

Drew will imitate at least two different vocal lengths of a vowel sound for 6/10 opportunities. Met 12/13/07.

Drew will produce speech level one sounds (/ah/, /oh/, /ow/, /ee/, /oo/, /b/, /m/, /w/, /n/, /d/, /s/, /sh/) in isolation for 8/10 trials for each sound. Met 2/7/08. All sounds produced spontaneously.

Drew will vocalize (with or without accompanying signs/gestures) to gain attention or indicate a desired action/object for 6/10 opportunities. Met 10/11/07.

Drew will use 10 word approximations following a model/prompt. Met 2/7/08. Drew is adding new words to his expressive vocabulary. He has exceeded this goal.

Long Term/Ongoing Goals:

To develop functional auditory comprehension of spoken language and non-speech sounds a a primary means of receiving information and communication.

To demonstrate age appropriate speech skills in order to utilize verbal communication as the primary means of communicating with others.

To use spoken language as the primary means of communicating in all environments and with all communication partners.

Current Status: Drew has made significant progress since his last progress report. He auditorily can follow a variety of commands, answer some yes/no questions and has dramatically increased his spoken vocabulary and sound repertoire. Andrew has made good progress towards extablished goals.

Stimulating Interaction

How do you get an infant with profound hearing loss to interact with you when you can not get his attention through sound?

It is natural for all babies - hearing and not - to make fun little cooing noises. Babies born with hearing loss do not get any reinforcement of the noises they make, so eventually over time these cooing noises will die out. It is important to try to interact and "talk" to your infant as much as possible to encourage this interaction. We found several things helpful:

We would get really close to Drew's face and make eye contact with him. In order to achieve this I would lay him on my lap, hold his hands in mine and put my face down close to his. As soon as he would look in my eyes I would instantly start talking to him. Then I would smile, make funny faces, play peek-a-boo to keep him talking, laughing, playing. Drew made some really good "ahh" and "goo" sounds when he was around three months old, and I suspect all parents of children with hearing loss have heard similar sounds from their child at a young age.

A Baby play mirror is an excellent toy to help stimulate interaction for an infant, especially one with hearing loss. If you sit the mirror next to your baby and turn his head so that he is looking at his reflection in the mirror the conversation begins! Drew would talk to himself all the time in that mirror. It was the best thing our Parent/Infant Educator ever told us to buy! We got so much use out of it - and Drew loved it. It is also good when the baby begins to push up because you can sit it in front of them and reward them for holding their head up. Drew really enjoyed this toy.



Drew was always attracted to lights. I think that because he couldn't hear he had a heightened sense of sight. So, if we were having problems getting him to look at us and interact with us because of the lights we would either move him or turn it off to get his attention.

We found Baby Einstein videos to be an excellent way to stimulate Drew's interaction with things around him. Drew loved watching the colors and dancing animals on the screen. I don't think he got anything in terms of auditory stimulation, but I know that he was interacting with it and would make noises of excitement.

Cause and effect toys are great for stimulating interaction as your baby gets a little older. Anything that rewards the baby for an action. Anything with a cause and effect. This helps a baby understand what will happen with conversation - you say something, I respond. Some of our favorite cause and effect toys are a spin top, busy ball popper and busy gears toy.

I actually think that it is quite amazing how well deaf and hearing impaired babies do at interacting with their environment, at least in my (limited) experience. My guess is that as a child gets older this interaction would die out. All the more reason for early intervention and appropriate amplification.

Language List - 8 1/2 Months

Taten's Mom asked me in a comment on a recent post to make a list of Drew's receptive and expressive language. Here goes!

Receptive Language:

Ma Ma

Da Da

Pa Pa

Open (door)

Close (door)

Other one

Upstairs

Sit down

Kiss

Ball

Up

In

Shoes

Bath

Bye bye

Spike it (when playing with his football)

Come here

Chew

Take a bite

Dance


Expressive Language:

Hi

Hello (he-yo)

Ma Ma

Da Da

Pa Pa

Up (uh)

Eat (eee)

More (mo)

Quack

Moo (mmm)

Baa (aaa)

No

Help (ell)

Clean Up (een uh)

Uh Oh

Oh No

Eddie (our dogs name)

Beep (eee, eee - car horn)

Choo choo (ooo, ooo)

Ahhh (airplane)

Tongue click (for a horse)

Ball

Thank you (ank oo)

Yeah! (complete with hand clapping)

Mickey (for the Mouse)


Cheese (eese, when his picture is being taken)


One of the really exciting things about his expressive language is that he is actually putting these words with his actions, not just repeating us when we say them. For instance, when he sees his toy airplane he will say, "ahhh." Or, if he wants a toy out of the toy box that he can't reach, he will say, "ell" for help. And in other exciting news, Drew is starting to use these words with his ears off! The other morning I went in to get him out of his crib and he had dropped his stuffed animal outside of his crib. As soon as I walked in his room, Drew said, "Uh oh," and looked down at his stuffed animal laying on the floor. Just amazing! When I handed it back to him he said, "ank oo."


Of all the words Drew can say, we hear "no" the most (all while shaking his head "no" too!). Sounds like a typical hearing toddler, if you ask me!

Discover the Day

The Baby Einstein Discover the Day book is one of our favorites to read to Drew. There are times throughout the day where it is just not possible for Drew to wear his cochlear implants, like in the bathtub, therefore leaving him without any sound. As a result, picking up langague surrounding these situations is difficutlt. This book helps to develop Drew's language for such events.



We love reading the page all about bath time to Drew. We talk all about the bubbles in the tub and reinforce it with the bubble sound button. We talk about washing (wash, wash) your body and shampooing your hair. We'll even pretend to do these things to Drew while reading the book.



It's also fun to match up the symbols under the flaps in the book to the symbol on the sound board. My daughter loves to play the sounds as we read the book, and it helps children to hear the sound of the cat, bird or spring. One thing that can be confusing to children is that an object can have many different ways to make the same sound. I really think that it is a great idea to have the child hear how you would make the sound with your mouth versus how it sounds manufactured in the book. This helps to develop the child's auditory memory, and they will likely recognize the different sounds for the same object.



I never realized how much language Drew is missing out on during the times that he does not have his "ears" on, so it is nice to have books that can help enforce this important language.

Snowed In!

Drew's Dad and I woke up a little bummed this morning. We were looking forward to attending the Deaf Initiatives' Navigating Your Child's Future seminar today - complete with childcare! But as a result of Blizzard 2008, we've decided to stay home. The roads look awful, it is still snowing, and the last time I looked at the calendar it said March.

I don't know if they will reschedule this presentation for a later date or not. One presenter drove all the way from Pennsylvania!

Here's to spring being right around the corner.

Growing Receptive Language Skills

Drew's receptive language is growing. He now understands, "Where are your shoes?" He will instantly stop whatever he is doing and begin the search to find his shoes. I piled his shoes up with a bunch of toys the other day and he was able to find them. He also understands me when I say, "Pick up your shoes." And he is understands, "Let's put your shoes on." He will walk over to me, lift his foot, while trying to keep his balance, and wait for me to put his shoe on. It is so wonderful to know that he is actually understanding what I say!

In addition, Drew has learned what "clean up" means. I guess my inherent trait to always have everything picked up around the house is actually paying off. I sing the "clean up" song at least ten times a day. It is so fun now to sing it with Drew. He will, in a sing-song voice, say "eeeen uhhh" and pick up a toy and then walk it over and put it in the toy box. I don't think he understands that he is supposed to leave the toy in there, because he picks it back up and begins to play again. We'll work on having him leave his toy behind.

Drew has also added a couple of new words. He can now say, "Duke", the name of my sisters dog. And probably the cutest is "Mickey" when he sees Mickey Mouse on the television. He loves Mickey! He can even do the "Hot Diggety Dog" dance. Maybe we'll need to plan a trip to Disney World sooner than expected?

Cochlear Implants: Q & A

I have received several emails recently from parents of children newly diagnosed with hearing loss. I love the fact that this blog has allowed us to connect with other families all across the country (well, the world, really) that are going through similar experiences. Some of the questions I have received may be on the minds of others, so I thought I would post all of my answers here:

What genetic testing should I have run on my child now that he has been diagnosed with hearing loss? Do the genetic testing results have any relevance in regard to the treatment options? Did you see a geneticist or can an ENT order genetic testing?

While I am sure genetic testing varies from one hospital to the next, our genetic testing was ordered by Drew's ENT. He ordered the test after our initial meeting as a result of Drew's hearing loss. Drew's testing was run when he was about six weeks old. The genetic test is called a "Comprehensive Hearing Panel" and consists of testing for Connexin 26, Connexin 30 and a specific gene mutation. These are the most common, non-syndromic causes of hearing loss that can be tested and are genetic.

Many people never find a cause of their child's hearing loss. It is believed that there are many genetic causes of hearing loss that have not yet been discovered, so if these tests come back negative, that does not mean that your child's hearing loss was not a genetic cause, just not anything they can test for. I would however strongly recommend having this test run because if your child's hearing loss was caused by one of these genetic causes, you can rule out other causes, some of which are syndromic.

In addition to the initial genetic testing, your ENT will order a CT scan or an MRI to check the anatomy of the child's' ears. After the CT scan or MRI, the ENT may elect to run further genetic testing. If it is found that the child has enlarged vestibular aqueducts, malformation of the inner ear or other anatomical abnormalities, there are specific genetic tests that can be run for syndromes that have these abnormalities, such as Pendred Syndrome. This is just one of many syndrome's associated with hearing loss.

The genetic testing has no relevance in your actual CI candidacy. The only thing it can give you is an idea of how well your child may do with a CI. Children with hearing loss caused by Connexin 26 are known to do very well with cochlear implants because they don't have any other known problems, such as with thier balance, kidneys, eyes, just to name a few. So you might get an understanding of the possible outcomes with a cochlear implant. For instance, if a child has Mondini or EVS, all electrodes might not go in the cochlea, so results can vary. Ultimately, the success of the child is in the hands of the parents. The surgeon and audiologist can only do so much. Without parent support, intervention and therapy, the child will never perform to his maximum potential.

What made you so sure about having Drew simultaneously implanted? Furthermore, what made you feel that Drew needed two implants?

There were several reasons:

First, bilateral cochlear implants are proven to help with sound localization and with hearing in noisy situations, two areas we felt were vitally important for children. Drew can hear what direction a car horn is coming from if he is playing in the street. Also, for children in noisy situations - classrooms, play grounds, Chuck E Cheese - they can hear much better. For example, we were having dinner at Roosters the other night and I was talking to the waitress, who is an audiology major at Ohio State, about Drew's cochlear implants. I was listing all of the words he can say and he was repeating them! He was sitting on the other side of the table, I was turned talking to the waitress and he could hear everything I was saying. I don't think this would happen with just one cochlear implant.

Second, we did not see the need to put Drew through two surgeries when we already knew we wanted Drew to have bilateral implants.

Third, if you do sequential implantation, meaning one ear after the other 3-6 months, or more, apart, there is a "big" ear and a "baby" ear. The new ear has to catch up. You have to do specific therapy to catch up that second ear because it has gone longer without auditory stimulation to the brain. We didn't want to do that. It is important to know that many parents did not have this option when their children were first implanted, as research into bilateral implants has only been around for about two years. When Drew was diagnosed we received mixed reviews on the medical necessity of bilateral implants. The whole concept was very new. Drew is only the second child in Ohio to receive bilateral implants. I have a feeling that many families would have chosen simultaneous implants if it would have been a choice at the time.

We have also, over the last eight months, run into other reasons why there is a significant advantage to bilateral cochlear implants.

What made you decide to have Drew implanted at such a young age?

Drew got zero, and I mean zero, benefit from his hearing aids. He never responded to anything with his hearing aids! Seriously, we got one response in the testing booth in over six months time. We never saw him respond to any environmental sounds at home (phone ringing, dog barking, doorbell). Every day that went by was one more day that Drew was not getting any auditory stimulation and one more day further behind in his development. Had Drew shown even the slightest benefit with his hearing aids we probably would not have pushed as hard as we did. (Although, seeing the results, I can't imagine not getting him implanted as young as possible). Once a child is 6 months old the complications of surgery reduce considerably, as the risk of anesthetic declines.

I was very persistent and direct with our ENTs on my expectation that Drew be implanted at eight months of age. I finally called each of the ENTs we were considering and asked them for a surgery date the first week of June for bilateral implants. One agreed, one did not. We would have gone to the end of the earth to get him implanted when we did. Travel distance to the implant center did not matter to us. We would have searched out skilled doctor after skilled doctor to have Drew implanted at that age.

What is the difference between Auditory Verbal and Auditory Oral philosophies? I know there is an Auditory Oral school near us - is that successful as well from what you have heard?

The line between AV and AO is blurring.

Traditionally, AV believes in not allowing the child to do any lipreading, mainstreaming from the beginning (meaning there are no AV schools because they believe in putting the child in a preschool with typical, hearing peers) and the process of catching up a child's hearing age to their actual age happens without any special needs schooling.

Traditionally, AO allows you to see the lips of the person talking. In fact, AO used to encourage the use of lipreading as a means of communication, although I think that idea is fading as amplification options become better and better. In addition, with AO, the idea is to give the child intensive therapy from the beginning, in a special needs setting, so that the child can mainstream in school by kindergarten, or when the child is ready.

We are doing a combination of both therapy methods with Drew. In his therapy sessions we use a lot of AV, where we don't allow Drew to see our lips, making him perform all tasks with auditory input only. But in everyday life, Drew can see our lips. We also strongly believe in sending Drew to an oral preschool that will focus on his specific needs and give him a head start to mainstreaming in kindergarten. I would not feel comfortable sending him to a mainstream preschool. To me, that would be like giving up precious years that we can use to educate him with intense auditory and speech therapy.

How old was Drew when he received hearing aids? Were you able to use loaner hearing aids? I'm thinking my child will be 3-4 months of age before he receives his hearing aids through our states loaner program.

Drew received his hearing aids when he was 10 weeks old. We did get loaner aids through our Regional Infant Hearing Program, because we knew that the hearing aids were likely not going to give Drew enough amplification to develop normal speech and hearing.

There is a mandatory hearing aid trial in order to develop candidacy for a cochlear implant, so the sooner your child receives hearing aids the sooner you can head down the CI path (if the aids aren't working). We had to wait 3 months from when we got the aids to begin down the path toward the cochlear implant, and this time frame may vary by program. We actually started the official cochlear implant process in March. We then had to do the candidacy process, which included meeting with a Social Worker, SLP, ENT and our audiologist. I had scheduled many of these appointments in advance to speed things up. The best advice I can give it to advocate for your child in order to move the process along. I went with the old saying, "The squeaky wheel gets the oil." I called the doctors office everyday to see if there were cancellations so that I could get Drew in for his evaluations sooner. I think that the receptionist got so sick of me calling everyday that she finally just gave me an earlier appointment.

What forums would you recommend I join?

There is a great Yahoo! Group: CI Circle. It is a group for parents with kids who have cochlear implants and for parents of kids in the cochlear implant process, although there are many professionals involved with the group as well. This group has been an excellent source of information for me throughout this entire process. This group was where I initially discovered that kids were being implanted under 12 months of age. They were also great with providing information on insurance companies that were providing coverage for bilaterals and for under 12 months of age.


If you have any recommendations or would like to expand on these questions, please leave a comment.

Fiona Watt's Touchy Feely Books

That's Not My Bear! That's Not My Dinosaur! We love the "That's Not" series of books by Fiona Watt.






These books are excellent for introducing your child to textures. Soft, rough, scratchy, just to name a few. Texture is an interesting concept for children, and these books highlight them in a fun and entertaining way. I'll never forget the first time I read That's Not My Bear to Drew after his cochlear implants were activated. He strummed his fingernails across the rough tongue of the bear for what seemed like hours, just listening to the sound.

We are currently using these books to work with Drew on learning his body parts. Cognitively at his age, 17 months, he should be able to identify these parts in the book and on himself. Using the books, we can ask Drew to point to different parts of the body. Then, the textures that the books highlights, stating "That's Not My Bear" create interest around a specific part of the body.

We hope you enjoy the That's Not series of books with your children!