Communication is Key to Happiness

Lately I have been trying to wrap my head around the fact that I have a Deaf child. This is more than just hearing aides, sign language, and silence. It is an inability to communicate with one another, a frustrated toddler, and a lot of temper tantrums. It causes outbursts over tiny things. Some of you are thinking "yep, sounds like terrible twos!" and I am sure that is some of what is going on. However, it is amplified because we have gone so long without being able to clearly communicate. She is unsure of many things I try to communicate, and I miss 90% of her requests. Katelyn has begun grabbing my hand and leading me to things, but this is only getting us part of the way there. Most requests are still unable to be deciphered.

Unfortunately, there are not a ton of resources available either. Hearing impairment / deafness is different for each person making it difficult to get a clear response on a communication management method. Signing is one way we are trying to bridge communication. Hopefully the hearing aides will make a huge difference. April 6, 2012 could be a huge day for us. Please keep the prayers coming that these hearing aides will amplify the hearing she has left in a way that she is able to understand the world around her.

If any of you have suggestions of deaf playgroups, meeting other families who have deaf children, or sign language classes in the Charlottesville, VA area, please let me know! I would really appreciate it!

Sign a Day Project: Please

Being Deaf is not a reason for Katelyn to be impolite. In an effort to teach her the things I would be working on with her as a hearing child, I ensure she says "Please" at appropriate times. It is one of the few signs we have down that she will also use. Unfortunately, she has not learned that hand placement is key in ASL, she often rubs her belly instead of her chest which is not a sign.

Today's Sign: Please

Place your right hand on the center of your chest. Rub your chest clockwise a few times. You have now signed the word please! This signifies a request or eagerness in relation to the discussion. It is not the same as "this pleases me".

http://www.lifeprint.com/asl101/pages-signs/p/please.htm

Sign a Day Project: Thank You

Due to Katelyn's hearing impairment, my family is going to be required to learn sign language at an accelerated pace. Friends & family have been asking how they can help, and the best thing to do is learn basic signs with us so Kate will feel more connected to our daily lives.

Learning sign language is a huge undertaking for all of us. In order to help friends and family (and work on the signs ourselves), I have decided to do a "Sign-A-Day" Project. This will hold me accountable to continue to learn new signs, and it should help friends and family learn the signs that we are working on daily with Katelyn.

Today's Sign -- Thank You

Use your right hand and touch your chin. Keep your hand flat and extend it away from your body towards the person you wish to thank, as if you were blowing a kiss (without puckering your lips).

credit: http://www.lifeprint.com/asl101/pages-signs/t/thankyou.htm

Thank you for joining us on this journey!

Katelyn's First Haircut

After about a year of my mother asking...I finally let her cut Katelyn's hair for the first time this past Sunday.

Hair washing -- she looks so little here still (I love it <3)

Katelyn is very much like I was when I was young. Mirrors are everywhere - she finds her reflection in windows, spoons, and microwave doors. She could look at herself in the mirror for hours. 

Perfect little angel. Sat still the whole time! It was just a trim. 

I love her curls and have no plans to cut them off! After picture will come soon....

The Big Move

What can make life more complicated than raising 4 kids (2, 9, 11, and 14 years old), learning sign language, taking care of 2 houses, planning a wedding, working full time, etc? A move.

Over the past month or so, we have been packing up my apartment and moving things to Eric's house. Consolidating houses is one step towards our new, consolidated, life. Slowly, we moved the small things ourselves, but we left the furniture to professionals.

If anyone in the Charlottesville, VA area is looking for a moving company, I would highly recommend Student Services Moving Company. It was a long day, but they did a great job moving the furniture and disassembling and reassembling the pieces. The stress was mostly just me feeling antsy watching people carry my things around.

After the movers finished up, the goal I had for Wednesday night was to have Katelyn's furniture organized and make her room look like it was set up. We still have to decorate and unpack her clothes, but she was VERY excited to see her new, pink, room with her furniture instead of just a pack-n-play. 

Having all of our stuff in one house is making things much easier. Now...just for the unpacking. I'm giving myself a deadline of 3 weeks to get all of my stuff unpacked. 

As Katelyn would say: Readyyyy? Set? Goooo!

ABR Results

Katelyn went in for the Auditory Brain stem Response test on Thursday morning at the UVa Medical Center. The team of doctors have concluded that she is clinically Deaf. Katelyn's brain did not show a response to any sound below 70 dBa. Below is a scale to give you an idea of what level that is.



orignially found on:
http://vancouver.ca/engsvcs/projects/soundsmart/soundAndNoise.htm

What was most concerning is that the booth testing done by the audiologist in January tested a response down to 35 dBa at certain tones. It is possible that her hearing loss is progressive and will continue to diminish. I believe that she appeared to respond to sounds when she truly did not. She is very attuned to non-verbal communication and could easily read the body language of an adult to give false positive responses. Since the ABR and booth tests are not conducted in the same manner, the doctors want to conduct the booth test again to see if her responses are similar or different than the ABR.


Now that we know she is Deaf. What do we do?


1. Learn American Sign Language

Luckily, there are lots of resources online to learn ASL. My current favorite is http://lifeprint.com/. I have also used YouTube to look up particular signs. So far we have learned very few, but Katelyn is responding well and seeming to catch on.

2. Lots of Audiologist appointments

On Friday, April 6th Katelyn is fitted with her hearing aides. We are lucky that the Virginia Department of Health will loan a set for 6 months as we save to purchase a set for Katelyn. Approximately twice a year we will have to get new ear molds made since she is growing so much, but the actual hearing aides will work for 4-5 years.

Providing that her hearing does not diminish, we will also conduct the booth hearing test once per month to ensure that her hearing has flat lined rather than deteriorated. Overall, these appointments will track her ability to hear with hearing aides and without.

3. See a Genetic doctor.

Dr. Hashisaki, the Ear Nose and Throat Doctor, has referred us to Dr. Wilson, a Genetic Doctor. Hearing loss is also connected to other complications that can lead to loss in kidney function and vision loss. Looking at her DNA will show if certain conditions exist without doing a lot of testing. I am hopeful that we can find out the most information possible with the least amount of testing using the genetic doctor rather than other testing methods.

4. Monitor her closely.

Her age makes many traditional tests on the ears and the eyes difficult to conduct without error. The margin of error is the main reason they plan to conduct the hearing booth test once per month. In addition, she has a feisty temperament making cooperation even more difficult. They have assured me that the 'mothers know best' strategy is the best one to monitor the success of her hearing aides as well.

5. Be patient.

The most important thing to gain from all of this is patience. Hearing loss is stressful on our family, however, having patience with Katelyn and one another will ensure that we work together to manage the hearing loss in the best way possible. With patience and time we will overcome this obstacle together.

originally found on:
http://www.raisingdeafkids.org/help/tech/hearingaids/aidcare.php

Providing that hearing loss is the only disability Katelyn has, she should lead a rather normal life. Deaf individuals often surpass their hearing peers in both speech and vocabulary due to the amount of speech therapy they receive.

We hope the hearing aides will work and that her hearing will not continue to diminish. Please keep Katelyn in your thoughts and prayers