Deaf Child Speech With Cochlear Implants - Update

Drew's Mom is presenting to a class of audiology students this week, to introduce them to the world of cochlear implants and speech therapy from a parent's perspective.  She did this last year to rave reviews, and was asked back again.

To prepare, we made a new video of Drew so these students can see his progress year over year; from a little baby responding to his name, to the talkative little boy we have today.  While Drew did a fine job, he was in rare form.

Watch this latest video to get a sense of Drew's personality and sense of humor - including his wardrobe of choice: Drew Singing, Rhyming and Laughing With Cochlear Implants"

Link to last year's video: "Cochlear Implant Speech Therapy"

Drew at 1 1/2: "Cochlear Implant Child Speaks 10 Months Post-Activation"

Game Day Treats

It's a big day in Buckeye Country, as we face off with the Miami Hurricanes later today. To get into the game day spirit, we're baking some yummy football treats. Which also happens to be a great language activity for Drew!

Drew is counting the number of cupcakes we are making. We also discussed the colors of the cupcake wrappers, and counted the number of yellow, red, pink, etc. Great for pre-math skills!

While we've known for several years now, through all of our therapy session, that baking provides a rich source of language, it hasn't really worked with a crazy boy that can't sit still for more than a minute. However, as Drew is nearing his fourth birthday (gasp), his attention span is growing. He's actually really enjoying baking, among other things, now.

Today, we talked about the ingredients that go into the cupcake mix. We counted. We sorted. We asked questions that made Drew recall what we had done, each step along the way. (Drew, did we add the eggs or the butter first?) He had fun, and in no way knew he was doing work!

The finished product!

Go Bucks! Beat the Hurricanes!

Summer Therapy

I've struggled quite a bit with what to do for Drew this summer in terms of therapy. What does he need? Who can provide it? What is he eligible for?

The unfortunate thing is that now that he is on an IEP he is not eligible for Extended School Year services. In order for our school district to provide summer services, we would have to demonstrate that Drew would have a significant reduction in his current performance level by not having services in the summer. That obviously isn't the case, so he isn't entitled to any school based services. (The reason being that all kids regress some during the summer months, and special needs kids should not be subject to services that peer students are not, unless the special need student would regress more than a peer. Basically, the summer months are not a time to "catch up" because it isn't fair to peers. Blah. Blah. Blah.)

So, we're left in this little area of doing well, but trying not to let the summer months lead to a large reduction in speech and language. So, what is right? Luckily we were informed about a grant that is provided through Drew's Preschool specifically for deaf and hard of hearing children. Drew was accepted to the grant program and will receive six hours of auditory therapy this summer. We're really excited about this formal therapy.

Other than the six hours of formal therapy, Drew's Dad and I signed Drew up for the preschool summer reading program through our local library, which guides us through reading specific books designed for Drew's age group. Some are pre-readers, some are letter and number books, and others are stories. Some come with questions for discussion to work on understanding of key concepts in the stories.

Other than that, what are we doing? We're having fun. We're going to relax. We're going to enjoy the summer months. This is the first summer where we've felt like we can just relax and that everything is going to be fine. That's a first for us. The past summers have been filled with CI activation - and all the appointments that go with it, therapy and IEP battles. We're looking forward to just being a normal family this summer!

Speech Therapy

Since Drew began school in September, I haven't had an opportunity to see any of his therapy sessions. It's funny how I went from being so involved in every little thing in his CI/therapy life to really having little involvement. Sure, I get weekly notes, and am given "homework" to do with him in the evenings or on the weekends, but it really is different from our life the previous three years!

I decided that I wanted to see how Drew was doing in his therapy sessions. Drew's teacher and SLP are fabulous (seriously, we are so lucky to have such wonderful people working with Drew) and they are so willing to let parents observe their classroom and small group sessions. Here is Drew, in action, at one of his most recent therapy sessions:



I can't believe how big my little boy is getting! He just amazing.

Holiday Gifts for the CI Child

As the Momma of a CI child, I am often asked about gift ideas for children with hearing loss. As we all know, much of our life with a CI child is spent playing games at home that also serve as the necessary therapy needed for communication. So, what are some of our most favorite gifts we have received for Drew that have also helped with therapy?

1. 100 Hoops - Basketball Counting Game: Drew loves this game! It is perfect for a little boy, and allows for work on counting, and vocabulary like in, out, over, under, made it, missed it, dunk it, brick, etc. It counts in Spanish, two's, ten's, backward. This was Drew's favorite Christmas Gift of 2008, and nearly 365 days later, he plays with it daily.
2. Giant Road Carpet and Melissa & Doug Wooden Vehicles & Traffic Signs: Drew loves to play with his transportation vehicles, and I love that he has no idea he is actually doing therapy! We work on things like, "Drew, you need to take the children to school! Which vehicle goes to school?" You can put up the stop signs and talk about stop vs. go. You can have the child make the vehicle go fast vs. slow. "Oh, Drew! The police car needs to go to the store - fast! Let's go!" So much fun...for everyone!
3. Melissa & Doug Band in a Box: Perfect for these little CI kiddos! Work on the different sounds of musical instruments. You can work on making a beat. "Shake the maracas fast!"
4. Plush "My Barnyard Friends Carrier" With Sound: When Drew was younger we loved this barnyard. They animals are soft and cuddly, and they each make noise! Plus the barn was nice because you could say, "Drew put the cow in the barn." This helped with working on in, out concepts. And, this plus barnyard works great for the small concept, you can get a larger animal sounds barn to talk about big vs. small, etc.
5. Little People 'Busy Day Home": A perfect sized house to work on many daily activities! It can start of very basic. "Drew, Put Daddy in Bed." Then you can get really advanced, "Drew, Mommy is tired. Where should she go?" And then I would wait for Drew to find the Mommy and lay her in the bed. This shows that Drew understands what "tired" means and that he understands you need to go to sleep when you are tired and that you sleep in your bed. Really, really difficult concepts, yet somehow we all learn this stuff!
6. Mr. Potato Head: Super fun to play with, reminding me of my childhood, yet excellent to help with learning body parts! At first, you can design Mr. Potato Head, and then ask your child, "Where is the nose?" Then you can have your child design Mr. Potato Head himself, talking about where each item goes. And, what we're doing now, you can play sabotage! One of my favorite things to do with Drew! I'll build Mr. Potato Head totally wrong...then Drew has to fix him. "No, Mommy, that isn't where the ear goes. The ear goes here! That's where the mouth goes!" Oh, how I love to play sabotage!

We actually have been given every toy I talked about above! And people say we have too many toys...ha! If you are reading this blog as a grandparent, aunt, uncle, friend...I can not tell you how much we appreciate these types of gifts. We work so hard with our kids daily on activities that seem so trivial, but in the grand scheme of things, these gifts help our children develop their listening, language and communication skills daily. The thoughtfulness of thinking about how a gift will help with the child's therapy is helpful beyond words.
So, what will Drew be getting for Christmas this year? We have so many of the "staples" when it comes to therapy, and in many ways, we are past the learning to listen phase of this journey. We're working on phonics, pre-reading, pre-math and fine motor skills. So, we've decided to get Drew a Leapster Learning Game System and Leapfrog Tag Reading System. He'll also be getting some of his favorite friends:

1) A Toy Story Talking Sheriff Woody
2) A Toy Story Talking Buzz Lightyear, and
3) ARex the Roaring Dinosaur from Toy Story!

He'll be so excited! Drew has worked so, so hard, so now we'll let him play.

What are some of your favorite therapy toys? Let's keep the list going!

These are some of Drew's favorites!

Moog Summer Workshop: Therapy

While Drew's Dad and I were in the Parent Sessions learning about Modeling & Imitation, Language Development or Cochlear Implant Mapping, to name a few topics, Drew was in a classroom and in therapy sessions. While we were at the conference, Drew received four hours of individual therapy. This is more than he has received all summer! With the state of Ohio in a budget crisis, the funds to our Regional Infant Hearing Program were reduced by over 50%, thus changing our services from weekly to monthly.

Drew's therapist at Moog, Michelle, was wonderful! Drew responded really well to her, and did well during his sessions. Michelle was really investigating Drew's language progress, both expressively and receptively, to see if there were in gaps in his language or things we have been missing.

One of the struggles with Drew continues to be his stubbornness. During therapy, Michelle would work on a task with Drew to see how many critical elements he can understand at one time. She would say something like, "Drew, Mommy drives the truck." Drew's Response? "No, Mommy rides in the car!" He has a mind of his own, and won't follow the task. So, while we are happy with his expressive, spontaneous utterances, we have no indication as to whether or not he auditorally can process the request of his therapist. It's very frustrating. We would assume that he understands, and simply has a mind of his own, but that can set us up for failure in the future.

Michelle was also looking to see if there were any gaps in his language, and she found that he didn't know any of the words in the kitchen! She showed him pictures of pots, pans, spatulas, toaster, etc. and he didn't know any of them receptively, let alone expressively. As Michelle was explaining this to me, it makes sense: Usually I am trying so hard after work just to get dinner on the table, that I often give the kids an activity to complete to keep them out of my kitchen! Now, I guess I will need to find something for them to do in the kitchen that will allow Drew to experience a lot of new vocabulary.

Overall, Drew's therapist thought that he was doing well and that with continued early intervention he will continue to develop his language and speech skills on par with his hearing peers.

How can you record your child's milestones? Moog provided us with a copy of My Baby & Me, which is an excellent book to track your child's speech and language development from the very beginning. Drew's Dad and I commented that we had wished we were given this book three years ago. I would recommend it for any family who has a child with hearing loss. It will show the first 100 words, next 100 words, has tabs for therapy records and notes, and in many ways is like a baby book to record important milestones.

Moog Summer Workshop: Parent Share

One of the best parts of the Moog Summer Workshop included a "Parent Share" on Sunday morning. Each family shared a language activity they have enjoyed with their hard of hearing or deaf child.

We shared our literacy idea with the other parents. Many of the families in attendance have children much younger than Drew, so I hope they will find the idea helpful in the coming years. Drew certainly has benefited from the activity, and will frequently ask us to walk around the house with him and point out the letters. It has also been an excellent way to identify which sounds Drew is able to produce, and which ones he can not.

Some excellent ideas we came away with from the parent share include:

• Peek-A-Boo bags: Excellent for throwing in the diaper bag and using as an activity while waiting during doctor appointments. I really like the A-Z and Learn to Read bags and will be ordering them soon!
• Tune Ups! Music: In the car, music is a great activity for all children. This CD was created specifically for children with hearing loss. It includes ideas on how to incorporate language while listening to the music! So exciting!
• Experience books using a Snapfish-type service. I've made some homemade versions, but hadn't thought of making a more professional style book. They look so nice and are much more sturdy.

Others shared favorite books, like Five Little Monkey's or homemade matching games with pictures of items throughout their house. I really like this idea, as it incorporated items that should be familiar to the child. It was by far one of my most favorite parts of the seminar.

Tough Decisions

I guess the title really says it all. We have made some really difficult decisions recently regarding our Cochlear Implant team and the service level being provided to Drew. I am always reluctant to share these types of situations, as I have no way of knowing who is reading this blog, and I don't want to upset or offend anyone. However, I don't think that we are the only family that will experience these types of issues, so I want to be candid and share our story, in hopes of helping others in our similar situation.

We shared with you a few months ago that we have been having difficulty with Drew's new therapist through our Cochlear Implant team. After continuing to try to work through the issues, it became abundantly clear that this new therapist was never going to provide the level of service to which we were accustom, and have grown to expect. While she improved in areas of "lesson plans" and "homework," we continued to struggle during the session themselves. There were points of uncomfortable silence, where it seemed like she didn't know what to do or say, and was searching for something else to do.

I never felt like this new therapist ever really made an effort to "learn" or understand Drew. One glaring example, during our final session, was when working with the Ling 6 sounds. Drew has clearly mastered detection and imitation of these sounds over the past 17+ months. When we do a Ling 6 test with Drew, we test each ear individually, at a distance of 9-12 feet, with background noise, like the television or radio. During our final session, this therapist thought testing the Ling 6 at a 1/2 foot distance in silence, with both ears on, would be a good idea.

Overall, I felt that she really lacked the personality it takes to be the type of therapist our hearing impaired child needed. She was very passive and quite shy. And personality, no matter how many meetings I request, and suggestions I give, is not something that can be changed. So we decided to readjust our therapy schedule. We are now seeing our therapist through the Early Intervention program weekly, and we have added a weekly (in home) music therapy through We Joy Sing. Drew continues to have preschool one day a week, and beginning in January will be taking a gymnastics class. All of this combines to make an excellent language calendar, and keeps our boy very busy!

While we have been going thorough this struggle with therapy, we have also been having problems with Drew's audiology team. I have to say that this whole process has been very difficult. It's so difficult sometimes to advocate for your child, especially when he or she is exceeding expectations. I have often felt like my concerns are automatically dismissed because my child can talk at age level.

The problems surrounding audiology began in September, at Drew's mapping appointment. It had been nearly five months since Drew's last mapping appointment, and turned out to be a total disaster. Drew was asked to complete a language evaluation, which took the first 50 minutes of the appointment. This could have been completed at home, or therapy, to not waste precious mapping time. Then Drew's audiologist proceeded to look at his maps for about 10 minutes. That's 10 minutes combined. For both ears. Our audiologist wasn't even going to put Drew in the sound booth! She did so only at my request. The booth test lasted about three minutes and then we were sent on our way. During the appointment, Drew's audiologist only made adjustments to the map of his right ear.

I calmed myself down over the next few hours, but could not shake the feeling that Drew was not properly mapped. I contacted other parents, who all found the fact that no adjustments were made to an ear after five months quite odd. Then, the paperwork from the appointment was sent out incorrectly, indicating that changes had been made to his left ear, when in fact they were made to his right. The whole ordeal left me questioning whether or not Drew was appropriately mapped.

Within days, Drew's Dad and I began to notice that Drew was confusing the /o/ and /m/ sounds. Even at a close distance. His therapist noted this as well. This was alarming, and I brought my concerns to Drew's audiologist. I insisted on have a full booth test done for Drew, including results for each ear individually. Drew's audiologist was very open to this and scheduled the appointment for the following week. But the booth test was again disappointing, as she only tested Drew with both ears on, and only did environmental sounds. When the audiogram was complete, she handed to it me and said that everything was fine. I immediately noticed that Drew was hearing at 25db for the low frequencies, and around 20db for higher frequencies.

I continued to question Drew's maps. The one thing I knew was that Drew continued to confuse the /o/ and /m/ sounds. I felt like something was wrong with Drew's maps.

I decided to take Drew for a second opinion, at another CI program in our state. I did not tell the audiologist of any of my concerns. I simply wanted her to evaluate, on her own, Drew's maps, looking for reassurance that everything was OK. This new audiologist started the cochlear implant mapping appointment with a booth test (something I had asked our old audiologist for, to no avail). The new audiologist was able to test each ear individually, with the booth test lasting over 50 minutes! Coming out of the booth I felt such a sense of relief, knowing that we would have a very clear understanding of exactly what Drew was hearing with each ear.

Within minutes of analyzing Drew's two audiograms, the new audiologist looked and me and said, "Are you noticing Drew confusing the /o/ and /m/ sounds at all?"

I nearly feel off of my chair. "Um, yeah, that's exactly why I'm here," I thought. I told the new audiologist that Drew had been confusing those two sounds. Within fifteen minutes the new audiologist had made the necessary adjustments, and I watched as she tested Drew in front of me, go from confusing the sounds to clearing recognizing them. My confidence was instantly restored in Drew's maps.

But I left the second opinion appointment that day with a tough decision to make. Should we continue to have Drew mapped with his original audiologist, or move all of our services for audiology to a different hospital? This question has weighed heavily on my mind for the last two months. I have thought about this question a lot, and have finally come to the decision that we are going to move Drew's audiology services to another program.

I have had several conversations with our old audiology department about my concerns, and I was really starting to feel like there was an attitude with our program like, "Lady. Your kid can hear. What else do you want? Maybe he will confuse the sounds sometimes. At least he can hear something." At one point, we were even told that we have really high expectations. It just became clear that no matter what I do, I will never have the confidence in our former audiologist as a result of this situation. And since our program only offers one mapping audiologist, we have no choice but to go elsewhere.

I guess the moral of this (really long) story to parents is to follow your gut instinct. If you don't feel like you child is hearing something, go with that feeling and have it checked out. If we would not have sought out a second opinion, who knows when Drew's map would have been adjusted appropriately, and think of all the language time we would have lost as a result. As parents, we know our children best and really need to follow our feelings. This has been a really hard decision to make, as we have such respect for our surgeon and the program he is trying to build, but we have made a decision in the best in interest of Drew.

One, Two, Three, Four, Seven

Drew is learning to count, and is doing quite well! Our primary therapist says that counting is a skill usually learned around the age of three, but we are going to start working on this now. At his most recent therapy session he was counting on every task we worked on, so he has shown a clear interest which is why she wants to go ahead and work on this skill now.

Often Drew will be playing by himself and I will over hear, "Oooone. Twoooo. Threeeeeee. Fooooour. Seven." It is hilarious, and makes me smile and laugh every time. He will count coasters, M & M's, balls, leaves. It really doesn't matter, he will count anything he can find, and he really enjoys it.

Drew continues to progress well, now talking regularly in three word phrases/sentences. He often says "I don't wan it," when referring to his dinner, or "I wanna go downstairs," telling me he wants to play with his sister. He has several phrases he uses on a regular basis, and it is becoming easier and easier to not only understand his needs, but understand his language.

We are having so much fun with this. I am forever thankful that I have learned to truly appreciate this gift. It is so fun hearing him talk, and each day we find him saying something new. I'm just so thankful that life is this normal, and that I don't take it for granted.

Moving Forward

I should not have left that last post up for so long. We have been extraordinarily busy, and while the list of blog ideas is rapidly growing in my mind, I just haven't had time to write. I shared with you this struggle we are going through for several reasons, but mostly because someone reading may encounter a similar situation in the future. We have created such a valuable support network through this blog, complete with your help in the comments, that we hope to help someone else in the future.

Drew's Dad and I decided to have a meeting with the manager of our speech therapist, to discuss the concerns we shared with you in my last post. We decided to do this quickly, as we didn't want to go much longer without sufficient resources. Drew was without therapy much of the summer, and the first month of the fall was not good. So instead of waiting, and leaving Drew in a poor situation, we decided to voice our concerns. Our talking points were:

• We were left without services for two months, waiting on a replacement therapist, which we were told would have significant experience with hearing impaired children following an AVT approach. Our expectation is that we are provided with a therapist equal to the level of service we were receiving.


• Drew's current level of listening and speech is irrelevant to the conversation.


• The new therapist clearly did not review information on Drew prior to our first appointment. She had no knowledge of his current language skills, implant history or current goals. She did not develop any goals with me.


• Therapy is needed to provide me with techniques that will facilitate higher order thinking and advance language. I need her to coach me on listening and language techniques and provide “homework material” that will enforce key concepts. Drew is awake an average of 84 hours a week, but only spends one hour in therapy.


• I need to see a clear lesson plan for Drew, with age and language appropriate activities that will push Drew to the next level in his listening and learning. I expect a session to have an observation period where we discuss things that are going well and things that we need to work on. This should be followed by a period of action, where specific techniques and activities are introduced to help Drew reach the next level in his listening and spoken language development. Finally, the session should include a period of reflection where we decide if this activity elicited the response we were looking for, and then a summary of what we did today with discussion on how we can incorporate into daily play.


• Provide homework and written notes from the session within 24 hours.

Your comments and suggestions were very helpful to me in establishing this outline for our meeting, so I thank you. I think many of you would be surprised by the way our therapy sessions have been structured, and I use that term loosely. There has been no discussion, no plan for the session, no notes, no homework and the list goes on. Our concerns, however, are going to be addressed in a timely manner, which we hope will bring back the left of service to which we are accustom. Many changes should be in place by our session this week.

The most immediate change will be to follow the typical session agenda, as presented above. The manager we spoke with thought this was the way the sessions were being run, and seemed quite surprised that the sessions actually had no structure or focus. In addition, we will be provided session notes within 24 hours of the session. I am very pleased with all of this.

In addition, we discussed the need for a more experience based therapy. Drew really enjoys activities, and it seems fitting to provide him with activities that would enrich his language while doing something fun. For example, one we did in the past, when he was a bit young to really take a lot from it, was to glue different objects with different textures to a piece of paper. We used words like soft, hard, fuzzy, prickly, tough, slick, just by using simple items off of the shelf of a Jo Ann Fabric store. It was an excellent activity, where Drew didn't even know he was learning! The goal is to establish a theme each month that will incorporate these types of activities. For example, October will be "All About Fall," with a pumpkin carving, leaf project and spooky story. We are really looking forward to seeing this implemented, as Drew is at the perfect age to enjoy these activities!

Overall, we feel very positive that the level of service will be improved. I would encourage anyone going through a similar situation to discuss their concerns. Our experience is that they generally want to provide the best service possible for our children, and with constructive feedback, they can make them better for all of our children.

Bump in the Road

I always hesitate to write when what I have to say is not positive. Not because I want to provide an image that everything is always sunny in our world, but because one of the downfalls of having a public blog is not knowing who is reading. So, in large part, Drew's Dad and I have chosen to keep our more problematic situations and debates between us, instead of sharing it with the cyber world.

Having said that, we have been going through a rather rough patch with Drew's cochlear implant services. We have been so fortunate to be surrounded by such wonderful doctors, audiologists and therapists throughout the past two years. But recent transitions have not been going well, and Drew's Dad and I are now facing some difficult decisions.

We learned back in May that Drew's primary therapist was moving. Her husband accepted a job offer on the east coast. We were devastated to learn of her departure. (In fact, I don't even know if I wished her luck when she told me the news I was so upset!) Drew responded so well with her. She had this nature about her that echoed a quite confidence. She knew when to talk a lot to Drew and when to let him quietly investigate the task. She provided invaluable guidance for our family. She worked so well with Drew's audiologist, providing detailed information on how Drew was responding in therapy, and potential areas for adjustment to his MAPs. Her personality just clicked with our family, and we felt like we were not only loosing Drew's therapist, but a wonderful advocate and friend.

The search thus began for a new therapist. Our old one departed in July, and we actually missed our last appointment with her, due to Drew's bout with Roseola. There was no replacement immediately in place, so we took nearly a two month hiatus from therapy. While I was not thrilled with this, Drew enjoyed the summer months, and it made coordinating all of his therapy with the fact that his sister did not have school much easier.

Now we find ourselves working with the new therapist. While she is an extraordinarily nice woman, she is not providing the level of service we are accustom to. So, I am left questioning our situation. What should a therapy session look like? How much interaction should take place between the therapist and child? The therapist and parent? What "homework" should be given? Do you learn something new at each therapy session? The list goes on.

Part of me knows that we were very blessed to have someone as talented as our previous therapist, so I know that I can not hold anyone to her standard. But I have concerns after our appointments this month about the way the sessions are being conducted, and I certainly have not learned anything new. Maybe it will get better, but I feel so helpless right now. While Drew is doing so well, we have worked so hard to get him to this point, I don't want to lose momentum now. The difference in language between a two year old and three year old is outrageous, so this transition is not happening at a good time. In addition, Drew's Dad and I both work full time, so taking him elsewhere for services would be challenging. We will do anything we have to for Drew, but I feel like we shouldn't have to do that.

My question to you is, what are your therapy sessions like? Do you see "lesson plans"? Do you leave with a focus or homework to do for the next week? What can we do to help make this transition better? How long should I give this transition period before I change therapists? Any comments you have would be greatly appreciated.

Drew's Therapy Notes

Our teacher through the Regional Infant Hearing Program is absolutely wonderful! Not only does Drew love her, but she is excellent at communicating and educating parents on not only language but cognitive development.

Below you will see Drew's therapy summary from this week. You can see the things we are working on and see how he is progressing. Also, the book we are reading this week, "Dear Zoo," by Rod Campbell, I would highly recommend!

Auditory Objectives/Materials Used:
1. Detect Ling sounds with conditioned response/Pegboard and Hoop
2. Discriminate environmental sounds/Everyday Lotto Sounds and Chips

Child’s Responses:
1. Drew detected and repeated all 6 Lings at 12 feet. He also repeated consonant-vowel and consonant-vowel-consonant patterns with /b/, /p/, /m/.
2. He did great with this even when I added a fourth sound. He discriminated 3/3 w/lion, bell, door, 4/4 w/cry, fire truck, dog, Happy Birthday, and 4/4 w/phone, drum, water, cat.


Language/Speech Objectives/Materials Used:
1. Update LDS
2. Birthday vocabulary/Playdoh and Birthday Bag
3. Follow directions with 2 critical elements/Little People


Child’s Responses:
1. Mom completed and returned it to me on Thursday. Drew had receptive and expressive skills in the 22-24 month old range!
2. He really enjoyed this activity and followed all my directions as we talked about each item in the book and bag. He also used a lot of speech in imitation and spontaneously.
3. Drew did an excellent job with this! He put the baby in the bed and Daddy in the tub with a choice of 3 people and 3 objects.


Cognitive Objectives/Materials Used:
1. Attend to a book: matching, prepositions (in, on top)/Dear Zoo Bag

Child’s Responses:
1. Drew participated with this but was starting to tire by this time. He understood the difference between in and on top but did not want to put the animals on top of the boxes. It was adorable when he told me “no” every time I asked him to put the animals on top instead of in the box. By the end he was doing it spontaneously and saying “on top”.


Recommendations/Notes:
Give him multiple-step directions at home. Make them relevant to something he wants or likes to do. It will help develop his auditory memory as well as following directions.
Continue to use prepositions (in, on or on top, under, over) and prepositional phrases when playing or interacting. Add some harder prepositions such as behind, next to, in front, etc.

Wii Are Learning Language

When we purchased our Wii a couple of months ago, we had no idea how much Drew and his sister would enjoy watching us play games! And we had no idea how many language opportunities our video game playing would present.

For instance, when we say, "Drew, do you want to drive?," he runs to the credenza, pulls the doors open and grabs the steering wheels, all while saying "drive, drive," over and over again. We can tell him exactly who to give the steering wheels to, and he will oblige.

Then, he'll start saying, "chair, chair" over and over, while walking to the dining room and pushing a chair into the living room. Drew knows that his Daddy likes to sit in an upright chair while playing the Wii.

We're currently enjoying the Mario Kart game, complete with the Moo Moo Meadows track, where we can review animal sounds. Now when we ask what track we should drive, Drew will say, "Moo," so we know he wants us to drive the course with the cows! We enjoy saying, "Ready, set, GO!," as a family at the start of each race. Drew will say, "Uh oh," every time I fall off of the track, which happens quite a bit. And each time Drew's Dad earns another trophy, Drew claps his hands while saying, "Yeah, Daddy!"

I never thought life would feel this normal. When you're told that your child is deaf and will need a cochlear implant, followed by years of therapy in order to maximize their hearing, you have this picture that your entire life will be spent in a therapists office as they work to catch the child up. And while it is important to have the formal therapy, we have found that there are plenty of language opportunities in our everyday activities. It is great because it allows Drew to learn to listen and talk while enjoying all of the things that we enjoy doing as a family. Wii are all having a lot of fun.

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.

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.

Language Assesment

Drew had his bi-weekly therapy with his teacher through the Regional Infant Hearing Program yesterday. My Mom took him to the appointment, as she does every time. Drew's teacher is excellent and always sends me a detailed report of the session, and my Mom will always let me know how Drew did and tell me exactly what we will be working on in the coming weeks. The report I received this week was excellent:

Auditory Objectives/Materials Used:
Detect Ling sounds with conditioned response/Hoop and Box of Chips
Discriminate 3 environmental sounds/2 each: Wrist Bells, Drum, Tube
Discriminate Ling and/or LtoL sounds/Ling objects and cards, bus, plane, firetruck and monkey, sheep, cat w/matching bags

Child’s Responses:
1. Detected all twice. Imitated /oo/.
2. Discriminated each one once.
3. Would not attend with Ling objects. Used two items at a time w/bags. He discriminated the bus, firetruck, monkey and cat by looking at the item or the bag. He looked at the cat upon hearing the word rather than the sound.

Language and Speech Objectives/Maerials Used:
Imitate Ling and/or LtoL sounds/Finger Puppets, Ling objects, bus, plane, firetruck, monkey, sheep, cat
Associate words/phrases with actions/Little People: mommy, daddy, baby w/chair, bed, tub, car, swing, spinner

Child’s Responses:
I didn’t use the finger puppets. See below for a list of imitated and spontaneous utterances.
Spontaneously used a lot of phrases with the correct objects (see below). He did put daddy in chair w/ “sit down”, put grandma in swing w/ “swing grandma”, and pushed the swing w/ “push, push”.

Cognitive Objectives/Materials Used:
1. Match object-to-picture/Objects w/matching bags
2. Attend to a book/Where Is Baby’s Belly Button? with doll

Child’s Responses:
1. He cooperated with this and put the objects in but did not demonstrate any clear matching.
2. This was the last thing we did and he was tired and ready to get down.

And probably the most exciting piece of the report...

Spontaneous Utterances:

ahhhhhhh upon seeing the airplane
owl upon seeing the owl (new)
thank you when I gave him things
roun-n-roun upon seeing the spinner
eeeeeee when playing w/slide
hi when Grandma walked in room

Imitated Utterances:

out
sit down
go
buh, buh w/bus
aa, aa, aa, w/sheep
dat for cat
heyo for hello w/phone
ee, ee w/monkey

Drew is making tremendous progress and we feel like we are on the verge of a huge language explosion! He is using acutal words and putting them with objects. Ball is by far his favorite, but he has also used eat, Dada, PaPa and even Mama appropriately! Last night while playing he correctly made a gallaping noise with his tounge when asked, "What sound does a horse make?" He also has an excellent "quack" now when asked, "What sound does a duck make?" This morning he followed this direction: "Drew, please put the diaper in the diaper champ." I was amazed. I get so excited when he does these things. We enjoyed some nice hi-fives after he accomplished that task. (He loves to give hi-fives!)

I also completed a language assesment for Drew. Drew's Dad and I responded to a series of questions on things Drew can do both expressively and receptively. At sixteen months of age, hearing age of seven months, Drew measured at twelve months of age in both categories. Although, I have to say I peeked at the next level and he is doing many of the things in the 14-16 month category, like attempting to imitate "thank you." I believe that when we next do this assesment, in six months, that he will be very close to being age appropriate for his lanugage development.

I know that there are a lot of parents reading this blog, many of which are parents of children newly diagnosed with hearing loss. Some of you have even introduced yourself! I have had a lot of questions regarding early implantation, insurance coverage, simultaneous implants, etc. I really feel that Drew is doing so well because his deafness was caused by Connexin 26 and because he was identified early, implanted early and implanted simultaneously. If you feel like hearing aids are not providing your baby with enough amplification and feel a cochlear implant is in his or her future, be persistent! While having simultaneous implants in all children is not possible (given the geneology of the loss, malformation in the cochlea, known balance disorders), implantation under 12 months of age is possible and the results are amazing. I am so thankful that we put together a team for Drew that believed in getting him implanted as young as possible. The results are truly amazing.

Drew Can Hear The "Ling" Sounds (Video)

Drew is consistently moving through his different "maps" and is doing well. Yesterday we tested his hearing ability by having Drew's Mom sit behind him and make the "Ling Sounds". These sounds are 1) "aaah", 2) "oooh", 3) "eeee", 4) "mmmm", 5) "ssss", and 6) "shhh", and are supposed to represent the sounds that one needs to be able to detect to hear speech properly.

Here is Drew hearing the "Lings":





We were excited to see that Drew clearly responded to most of them and seemed to respond to the others when the sounds were made at close range. We will keep moving farther and farther away to monitor how well he is hearing, but this is a great start!

Therapy, Mapping and Mom's Out of Town

What a busy week! I am at my company's annual National Sales Meeting in Washington, D.C. Drew's Dad is a single parent this week and Grandma has been taking Drew all around Columbus for his appointments. Life is hectic. But so rewarding.

Drew had his first Auditory Verbal Therapy (AVT) on Monday morning. He did great! I haven't been able to read the full report, but according the the therapist and Grandma, he was able to detect a good amount of the ling sounds at close range, with his right ear performing just a bit better than his left. The therapist even said that she saw a huge difference in him, a bilateral kid, than what she initially sees in children with just one implant. Drew is already able to localize many sounds. This never would have been possible without bilateral implants.

Drew also had his second mapping this week. By all accounts, from the audiologist, Grandma and his teacher of the Deaf (who attended the appointment), Drew did great! I haven't seen the full report yet, but they were able to correctly program more electrodes in each ear and turn up the volume quite significantly. He left the appointment again with four new maps, which we will turn up gradually over the coming weeks. Drew's next mapping is scheduled for July 26th.

Later on Tuesday, Drew's Dad reported that Drew heard the "snapping" noise the fasteners make in his high chair when he was getting Drew ready to eat dinner. Just amazing! He is hearing new sounds everyday, responding to those sounds and is overall a very happy little boy.

One of Drew's therapists emailed me his therapy plan for the coming months. In the immediate future Drew will be able to identify the presence of sound, absence of sound and all of the ling sounds at close range, 3 feet and 6 feet away. This seems very reasonable and attainable, especially considering that Drew hasn't even been hearing for two weeks and has already made noticeable progress. I continued to read: Drew will respond to his name, wave "good bye" without visual cutes, meaningfully say "Mama" and "Dada". Can you believe it? My deaf little boy is going to be able to call me "Mama". What a wonderful world we live in!