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!