2 Years

I can't believe it's been nearly 2 years since I last posted! Well, we made it through 2 years of commuting 260 miles per day, 4 days per week, so the kids could attend Ohio Valley Voices, the amazing oral deaf school in the Cincinnati area. We thought we'd be so happy this year, not having to make that drive. However, we've found that we miss Ohio Valley Voices terribly. The kids' first year in mainstream preschool has been okay, but it certainly isn't amazing. I keep telling myself, "this is what you wanted, this is what you (and the kids) have worked so hard for...mainstream schooling." I just didn't realize how good we had it when the kids were attending a school, in which all of the staff members are experts in hearing loss.

Lily Singing Ghostbusters

This is a video of Lily singing her version of the Ghostbusters theme song. She likes the second one with the pink slime so she sings "pink ghostbusters." :)

We'lll All Float On

"Ok don't worry we'll all float on. Even if things get heavy we'll all float on."

I still haven't made any decisions, but I've decided to take some advice and just relax. I'm going to TRY to stop thinking about next year so much and just focus on right now. We are definitely going to finish out the year at OVV. We are also starting up auditory verbal therapy again this week. We are working with Todd Houston, doing tele-therapy through the University of Akron. We're excited about this new way of trying therapy. This will allow me to be a big part of my kids' language learning again, like in the early days of Lily's therapy. We'll do it right in our own home with a computer. Our first session with Todd is this Wednesday. Can't wait to see how it goes. Stay tuned! :)

Singing and Nursey Rhymes

Lily has been learning some songs at school that I captured on video: Baby Bumblebee and The Bear Went Over the Mountain. At home we have been reading lots of nursery rhymes. Lily has memorized Little Boy Blue.

Alexander hardly EVER cooperates when I get out the camera, but I did catch him saying "pig and "dog." Enjoy the videos.

The Fight with Myself

"She never slows down. She doesn't know why, but she knows that when she's all alone it feels like it's all coming down...she fears if she cries that first tear, the tears will not stop raining down. So stand in the rain, stand your ground. Stand up when it's all crashing down. You stand through the pain, you won't drown...She won't make a sound alone in this fight with herself..."

These lyrics pretty much describe how I'm feeling these days. I'm constantly fighting myself about what is best for my children. The life of a mother, right? I can NOT decide what to do about their language learning for next year. I think we have pretty much decided to start both kids in auditory verbal therapy again, regardless of what we decide about school placement for next year. So the question still remains: should we mainstream Lily next year or do another year at OVV? I go back and forth almost daily. I was leaning toward another year at OVV and then I talked to the kids tonight and Lily was crying and saying she wanted to go home and see Mommy. :( To help save on gas, most weeks the kids spend at least one night at my uncle's in Cinci. Some weeks (like this one) they stay 2 nights. It kills me! I KNOW, without a doubt, that OVV is the best school for keeping Lily on track with auditory and language development. However, would AVT and mainstream be enough? Maybe? So the fight with myself continues....

With a Hearing Aid, a Hearing-Impaired Child Can Hear as Well as You - False!

I found this article on listen-up.org. I love how it illustrates hearing loss and wearing hearing aids. I was first introduced to this illustration when we visited The Moog Center for Deaf Education in St. Louis this summer. It's funny because I was in the dark about how Alexander hears with his hearing aids. I used to believe his hearing aids corrected his hearing like my glasses/contacts correct my vision. I was WRONG! I remember feeling so disappointed to learn this. I'm glad I know because now I will fight harder and probably longer so that he can get what he needs to learn language, just like I fight for Lily. I wanted to post this for friends and family to help you all understand better too. Many people think "it's not as bad" for Alexander because he can "hear better" than Lily. It seems easier for people to understand that Lily doesn't hear like normal hearing people and that she never will. This is true for Alexander as well. His hearing aids make sounds louder, but they will never make the sounds clearer. :(

FYI: Lily and Alexander both have sensorineural hearing loss. Click on the following links to read more about the differences. Conductive hearing loss vs. sensorineural hearing loss.

With a Hearing Aid, a Hearing-Impaired Child Can Hear as Well as You - False!

Unless you yourself have a hearing loss, the only kind of hearing loss you can probably identify with is the kind that can occur when you get a cold, and that's a conductive loss. You may wrongly assume that hearing aids will "fix" the problem and don't use techniques that can make communication better for a person wearing hearing aids. Hearing aids cannot fix the hearing of someone with a sensorineural hearing loss, especially a child.

Hearing aids can make sounds louder, but cannot make them clearer. Listening through a hearing aid has been described as tuning a radio slightly off a radio station, allowing static, then making it louder. Just as with a hearing aid, as the radio plays louder, the static and noise become worse.

This page will demonstrate visually how hearing aids work for conductive and sensorineural hearing loss. Take a look at this image:

Try to read the word in the center. Next click on the image to see it enlarged, then use your back arrow to return here. Go ahead...we'll wait.

You should have been able to easily read the word in the center. This is how a hearing aid works for a conductive hearing loss: once sound is loud enough (bigger) it can be understood.

Now take a look at this image:

Again, see if you can read the word in the center. Click on this image to see it enlarged, then use your back arrow to return here. We'll wait for you again.

Could you read the word in the center? This is the way hearing aids work for sensorineural loss. Even though the aid makes sounds louder, it does not fill in parts of the sound that are missing or distorted. How much of the word is missing can be affected by things such as condition of the inner ear, auditory fatigue , listening experiences, prior exposure to the word, condition of the earmold, condition of the hearing aid, and background noise.

Some information for filling in the parts of the words that are missing or distorted may be gained through speech-reading (lip-reading). Even under the best conditions only about 30 to 40 percent of speech can be understood on the lips. Mouth the words pan, ban, and man. Notice that the position of your lips is the same for all 3 words. Even some words you may not think look the same, do. Try mouthing the words red and green. Once again, the position of your lips is the same for both words.

Other clues for filling in missing parts can be body language, context, tone of voice, repetition, pictures, or any of a number of different strategies. FM or Sound Field systems can be beneficial if background noise is adding to the problem.

We hope this demonstration has helped you understand why it is important to become familiar with and use strategies that will help a hearing-impaired child understand what is being said. You'll find links to many pages on techniques that can help communication on our Teaching & Education Resources page.

Scroll down to the bottom of this page to find out what the word is on the second card.

Did you correctly guess the word on the second card? The word is FIRETRUCK.

Found at http://www.listen-up.org/haid/with-aid.htm

Adapted from: Nussbaum, Debra. There's A Hearing Impaired Child In My Class. Washington, DC: Gallaudet University, 1988.

What to Do?

I'm already thinking about what next year will look like in terms of my children's listening and language learning. Although we love, love, LOVE Ohio Valley Voices, I'm just not sure we can keep up with it financially. OVV has offered generous financial aid, but we still owe money for both kids' tuition. Even though we only owe a fraction of the total tuition, we really just don't have it. We can barely keep up with the car repairs now that my 10 year old car is traveling over 1,000 miles each week.

Sooo, we are considering putting both kids back in AVT and sending Lily to a mainstream preschool next year. This option makes me really nervous since the success of AVT depends on the family working on goals during the week. We did a great job at this when Lily was a baby because there was no one else who needed our attention. I'm not sure how well we could make it work now. We need to do at least 1 hour of focused therapy everyday with both kids. What will Alexander do while we're working with Lily and what will Lily do while we work with Alexander? Both of my kids want ALL the attention ALL the time! :)

Those of you with children in mainstream preschool: did you continue AVT? Have your children been successful in the mainstream?

More Words from Alexander

Alexander is saying frog and fish.

Alexander's New Words

Just a quick note about Alexander's new words. He is saying star, open, potty, Lily, and Nee-Nee. Still no "mommy." :(

I want to try to do a better job of journaling his words. I didn't do a very good job with Lily. I have it in a notebook somewhere. But on the blog, everything is all organized by date...much better system.

Self-Advocacy

Lily is starting to be really good at advocating for herself when she didn't/can't hear something. I think this is one of the things they have been working on at her school. When she first doesn't hear something she says, "Huh?" "What?" or "What did you say?" After I repeat myself 2 or 3 times and she still doesn't hear me, she says, "I can't hear you mommy. Say it louder." I love that she has learned to express when she can't hear something. But even more than that, I love that she can tell someone how they can help her..."say it louder." I think this will be especially helpful when she goes to mainstream school. She will be able to tell the kids if she can't hear them and what they can do so that she WILL be able to hear them. I absolutely LOVE all the things she is learning at OVV.

Alexander is learning new words every day. His new words are bear (with a growl), banana, Diego (just sounds like "duh, duh, duh" but it's what he means), jump, pig, rabbit, duck, ball, diaper. Those are the ones I can think of at the moment.

He understands even more. When asked to point to the correct picture, he can point to a chicken, horse, owl, sheep, elephant, and fish. He also knows what it means to take a bath. When I ask him if he wants to take a bath, he runs to the bathroom and stands beside the bathtub. :)

Here are a few pics from the first snow of the season.

My Blessings: Lily and Alexander

So Alexander's birthday video is blocked because of the song I used "Beautiful Boy." Due to copyright, I can't use it apparently. So I'll try again with this song. This is the original song I put with the video to share at his church baby dedication. The song on this video is "Blessings." Although this video is about Alexander, both of my children are incredible blessings.

I've shared on this blog that finding out about Alexander's hearing loss was bitter sweet. Yes, we had "been through this" before and yes, we knew what to do. There was also part of me that was glad Lily would have someone to relate to...someone who would understand what it's like to have trouble hearing your friends in the cafeteria or a noisy restaurant. Someone who would know what it's like not to be able to hear well in the swimming pool. Someone who knows what it's like to rely every single day on batteries and hearing devices. Since Josh and I are both hearing, we would never be able to relate to her in that way.

But there was also a big part of me that was sad and scared and a little angry that we had to go down this road again. And because I had been through this before and I DID know what to do, I knew that I would all too soon be faced with ABRs (infant hearing tests for which the baby has to be asleep and STAY asleep), hearing aids, ear molds (ugh!), more ABRs, more and more and more EAR MOLDS, sound booth testing, and the constant worry of whether or not he is amplified enough and correctly. By the way, the last thing still hasn't gone away. Since Alexander's hearing loss is moderate with a good chance of progression, I'm constantly wondering if he is getting enough of a boost from his hearing aids to be hearing all frequencies (especially the high frequencies). I also worry about how many words he understands and how many he uses in spontaneous speech. Is he on track for his age? Are we doing enough auditory verbal therapy? But with all the worrying, crying, praying and questioning, my babies are STILL, and will always be, THE VERY BEST things that have ever happened to me. Sometimes God's blessings look different than we expect.

Alexander's First Year

I made this video for Alexander's baby dedication and first birthday party and never got around to posting it for friends and family to see. So here it is 5 months late. :)

Christmas and Talking

Here are a few videos of the kids from different Christmas happenings.

Here is Lily at her Christmas program at Ohio Valley Voices. "Merry Christmas Mommy, Daddy, Alexander, and Mommy...and Nee-Nee." Nee-Nee is my mom, Lily's grandma.



This is Lily saying her poem at my grandmother's church. "Dear Baby Jesus, so tiny and new, came from heaven, for me and you."



This is Lily telling me my necklace is dangerous. :) Then she asks me if she can wear my necklace. Asking questions is one of the things she has been working on at OVV. She used to always say, "I want...." Now she is asking questions.



This is Alexander saying "ho, ho, ho" and "down."



And this is Alexander saying, "sheembo." We're not exactly sure what it means, but he always says it when he wants something to eat or drink. :)

Blessings

As we begin the new year, I think of how blessed we have been in 2011. We were blessed with health, as well as the incredible joy of watching Lily and Alexander grow and change. They have both grown tremendously in their language development. We feel blessed to have learned about The Moog Center for Deaf Education in St. Louis and the Moog Curriculum school in the Cincinnati area--Ohio Valley Voices. We are absolutely AMAZED at the progress Lily has made since she began attending OVV.

My mom has been the most tremendous blessing of 2011. After we learned of Lily's hearing loss, my mom dropped everything, moved from her home of 40+ years, and moved to our city to help us with Lily's therapy. She took Lily to auditory verbal therapy every week for 2 years. Without my mom, Lily wouldn't be able to go to OVV, which is a 2 hour, one way trip. My husband and I both work, so my mom takes Lily to school everyday. It is a huge sacrifice for her and she does it anyway. She never complains, even the day she was sick. She got sick one afternoon after picking Lily up from school. What is usually a 2 hour drive home turned into a 4 hour drive home as she had to stop so often while she was getting sick. Alexander screamed the whole way home and she was so sick, but still no complaining. I hope she knows how much I love and appreciate her. My mom has been just as dedicated to my children's success with listening and speaking as Josh and I have been.

She is a HUGE blessing! I love you mom!

Good-bye to Dr. Kang

Lily's ENT and the surgeon who performed her bilateral cochlear implant surgery is leaving Nationwide Children's Hospital in Columbus at the end of December. We are sad to see him go. He gave our Lily the beautiful gift of hearing and we will forever be grateful for that! I made a video of Lily's "journey" to show Dr. Kang what his work has made possible. When I make videos like this, it takes me back to each moment and all the feelings of fear, anger, sadness, joy, excitement, etc. It has been an incredible journey!

Hearing Journey

Alexander's First Words and Lily's School

Alexander has a few words. He has been saying "hi" for quite a while, but it sounded more like "ha" and now it sounds perfectly like "hi." Here are the other words he has been saying in the last month: dog, cat, cow, moo, nose, good-bye, daddy, uh-oh. He babbles in sentences all the time. We have no idea what he is saying, but he does. :) It's a very different experience than we had with Lily. About 3 months after she was implanted she started imitating words. She babbled very little and she never babbled in sentences. She pretty much just started using words. The difference in the two kids could be so many things. Since Alexander's hearing loss is moderate, he has been able to hear some since birth. With his hearing aids (which he got at 2 months) we think he hears pretty well. So maybe the difference is earlier access to sound. Lily really didn't hear anything until one week before she turned 10 months old. I wonder if the difference has to do with HOW they hear. Lily hears electronically and Alexander hears acoustically. Maybe it's the difference in boys and girls or just personality. I don't know, but it certainly is a different hearing journey with Alexander. His hearing was tested in October and his hearing continues to remain stable, no significant changes.


Lily began attending Ohio Valley Voices full time two weeks ago. Her school day is 8:45-3:30. She goes Mon. Tues. Wed. and Fri. I can't even begin to explain what an amazing school OVV is. We have heard such big changes in Lily's language since she began the toddler program in August and even bigger changes in just a week of the full day program. I was cooking a few days ago and Lily said, "The water has to boil. It is very hot." She gets 2.5 hours of individualized/partner therapy EVERY DAY! This is what her schedule looks like.

8:45-9:00 Device Check
9:00-9:30 Morning Meeting
9:30-10:00 Vocabulary/Syntax (Individualized/Partner Therapy)
10:00-10:30 Snack/Recess
10:30-11:00 Speech/Auditory Training (Individualized/Partner Therapy)
11:00-11:30 Group Instruction
11:30-11:45 Conversational Language (Individualized/Partner Therapy)
11:45-12:00 Language Extension (Individualized/Partner Therapy)
1200:12:20 Lunch
12:20-1:00 Recess/Nap
1:00-1:30 Nap
1:30-2:00 Movement/Drama
2:00-2:30 Vocabulary Review/Sentence Cards (Individualized/Partner Therapy)
2:30-3:00 Individualized Instruction
3:00-3:30 Language Experience (Individualized/Partner Therapy)
3:30-3:35 Go home

She brings home a "My Day" paper every day so we know what vocabulary words and grammatical structures she is working on at school.

We also get a newsletter each week letting us know what they are learning in the regular classroom.

So far we LOVE her school. The drive is huge and certainly not easy for my mom or the kids. They are all getting into the new routine though. Lily wakes up a 6:00 a.m every day now (even the weekends). She is back to napping every day too. Lily loves her school and her friends too. She talks about them at home and asks when she can go to "Lily's school." So far, so good!

We celebrated Lily's third birthday last week. She had a princess birthday party and lots of fun!

So Much to Update...

So the last time I wrote we were heading to the Moog Center for Deaf Education in St. Louis for a parent workshop. I was worried that I wouldn't learn anything new and that it would be an expensive trip for nothing. So not true! I learned a lot (the most important being we always need to raise the bar and expect a little more language from our children) and the experience helped me decide on a preschool placement for Lily. Before visiting Moog I was convinced she was ready for mainstream preschool. They explained that, even though she has relatively good receptive and expressive language for her age, she probably would not continue to gain new vocabulary at the rate of her hearing peers in a typical preschool program. It is best that she is able to understand and speak complex sentences of 8-10 words before entering mainstream school. The problem with mainstream schools is that they don't teach children how to talk. Hearing children will learn most of their new vocabulary incidentally (just by hearing adults use it in conversation), but our hearing impaired kids won't learn nearly as much in the same way. They need direct, intensive language instruction to make the same gains.

Sooo, after visiting the two auditory oral programs in Columbus and Ohio Valley Voices (Moog curriculum school) in Cincinnati, I was convinced that Ohio Valley Voices in Cincinnati would give Lily the best chance at closing the language gap between her and her hearing peers so that she will be ready to enter mainstream kindergarten with little to no special education services. We hope that by the time she starts kindergarten, the only big obstacle she will have is learning to listen with all the background noise. At Ohio Valley Voices she gets 2.5 hours per day of direct, intensive speech/language and auditory therapy and 2.5 hours per day of academics. During therapy she learns new vocabulary, new grammatical structures, works on articulation and performs audition tasks to increase her auditory memory. She will begin this program in November when she turns 3. She is currently enrolled in the toddler program there, where she gets 1.5 hours per day in therapy.

Alexander is receiving 1 hour per week of therapy. That is another reason we chose to go to Cinci. At Children's Hospital in Columbus, we were told that Alexander was not far enough behind in his language development to receive therapy. Those who know me know that wasn't going to fly with me. I believe, with all my heart, that early intervention is soooo important. So I found a program that agrees with me. I often worry that Alexander will "slip through the cracks" since his hearing loss isn't profound. Another thing I learned from Moog in St. Louis, is that hearing aids don't "fix" hearing impairment like glasses "fix" vision impairment. I previously assumed that they did. As someone who wears glasses, I know that my glasses allow me to see perfectly. Not the case with Alexander and his hearing aids. The aids amplify sounds that he cannot hear without them, but the sound isn't clear and he may still miss some sounds completely. He will never hear like me and neither will Lily. So he needs early intervention also. At OVV, they can both receive therapy in one place. The on-site audiologist also sees both kids regularly for programming, ear molds, MAPping, repairs, etc. So we get everything in one place.


After deciding where I thought Lily should attend school, I spent the rest of the summer and first part of fall preparing for the IEP meeting. I knew I might meet resistance since I would be asking for our local school district to agree to send her to OVV in Cincinnati. To any of you going through the process or about to, buy the book "From Emotions to Advocacy" by Pam and Pete Wright. The book isn't specific to children with hearing loss, but it is about navigating the IEP process for your child with a disability. It teaches you to organize your child's file (audiograms, speech evaluations, etc.), document everything in writing (it even has several sample letters for different situations), know the law, know your rights, and advocate for your child. After writing a zillion letters, researching programs again and again, having a meeting to determine eligibility for special education services, we finally had the IEP meeting yesterday. After a lengthy 2.5 hours of writing and re-writing goals and objectives, determining services and the amount of time and frequency she should receive services, we were finally to the big question. WHERE will Lily receive these services so that she will have access to an appropriate education as a child with a profound bilateral hearing loss? Everyone's feathers got a bit ruffled, but we determined that Ohio Valley Voices is the appropriate placement for Lily for this year. So we do have school district support, which I am soooo happy about.

Here's to a great start to the school year! Remember my family as my mom travels with the kids to Cincinnati several times a week. I pray for safety and peace of mind (as Lily can sometimes be hard to get along with in the car). :)

Heading to St. Louis

So we decided to go to The Moog Center for the Deaf in St. Louis, MO for the 5 day parent workshop next week. Mom will take of Alexander during the day while Lily and I are in class. I'm excited and hoping that I will learn lots of new language activities for Lily and Alexander.

As far as hearing updates go, Alexander had a sound booth appointment at the end of May and he responded to speech at 10dB. So far, it looks like his hearing hasn't changed. However, Lily's sound booth appointment at the end of April didn't go as well. She responded to speech at 25dB. Not so bad, but she was responding to speech at 15dB four months ago. At the appointment, she was wearing her fancy Easter dress, which was noisy, and she wasn't fully cooperating at 8:15 in the morning. Who is, right? Sooo, we're going to try another sound booth in July to check in on her hearing.

Moog Center Summer Workshop

We're thinking of attending the Moog Center's summer workshop for parents of kids with deaf/hard of hearing kids. The workshop is in St. Louis, MO. It seems like a great workshop and I know that many of you with D/HH kids have attended this workshop. Is it worth the time and money to go? Did you learn lots of new things? Should we go? Please leave a comment with anything you would like to share. Thanks!

Sound Booth and Preschool

Alexander's last two sound booth tests went well. Last month, during an aided check (hearing aids on) he responded to speech at 20dB. This is great news as normal hearing is in the range of 0-20 dB. Last week, during an unaided check (hearing aids off) we learned that his hearing has not changed since birth. He responded to speech at 40dB. This is also good news because we know that there is a chance that his hearing loss could progress and his hearing could become worse. If his hearing continues to stay the same, he will not need cochlear implant surgery like Lily. He will only need to wear his hearing aids.

Lily is still doing fantastic with her hearing and speaking. She is speaking in sentences and picking up new words all the time. We are currently in the process of making a decision about preschool for Lily next year. It doesn't seem like she can be that old. It seems like just yesterday she was a tiny baby asleep in my arms. Now she is a toddler asleep in my arms; still my baby. :) She is potty trained and ready for school in the fall. We are leaning toward putting her in a mainstream preschool. The closest oral deaf preschool in our area is about an hour away and the children attend every day, all day. I don't think I'm ready for Lily to be at school that long when she is so young. I also can't imagine how exhausted she would be attending school all day and then riding to and from school for 2 hours. Also, because her birthday is in November, she will have to attend preschool for 3 full years before entering kindergarten, which seems like a lot of school. Therefore, we are thinking of sending her to a private church preschool next year that she will just attend one day a week and spend the other four days with my mom. She will continue her auditory verbal/speech therapy at Children's Hospital next year.

Since Lily will probably be going to a mainstream school next year, I made her a book on shutterfly.com about her ears. The teacher can read it to the class as a way of introducing the other children to her CIs. Here are a few pages from her book.