Rebecca has a Cochlear Freedom. She has had Kaci the Kaola for some time, but did not have the implant part for the kaola. I called Cochlear and got her one. It is so cute, she has been carrying it everywhere. I asked her, "Do I still need to sign to the Kaola even though she has an implant?" She said, "Yes, it really helps her". She takes off the implant every night and puts it in its own case that matches hers. Here's some pictures.

We are still waiting to hear back from her audiologist from about her hearing aid. I'll let you know after we get it in.

New Aid

We went to our appointment for the hearing aid and got fitted for the mold. Rebecca woke up so excited, I felt bad that she had to wait until the afternoon for her appointment. She chose a purple see-through hearing aid with a pink/purple mold. It will be a Phonak Junior Naida UltraPower. Compared to her CI, her hearing aid is really small. Some positives about this peticular aid and why we chose it:

1) It is water resistant. It can be worn while playing sports or even when caught in the rain.

2) It takes the same kind of batteries as her CI, so we don't have to order different batteries.

3) It is a strong hearing aid, which is exactly what she needs.

We did the hearing test on the right ear and she heard nothing. She never heard the sound not matter how loud it got. We are getting the aid just to keep the nerve stimulated and it will also hopefully help with balance as well. We will see how it goes. We go back in a few weeks for our fitting.

Here's a picture of what it will look like:

Exciting News For Me And My Family

Sunday we did 2 volunteer projects, we made hygiene kits for women who are exiting prision and we made AIDS kits to send to Africa. We had a great time and ended up being the receipient of 2 people who wanted to volunteer and help our family. The first person is a senior in high school, she is learning ASL and thinks that she wants to be a Deaf Education teacher. She volunteered her Sunday mornings and Wednesday evenings to interpret for Rebecca. Now, I can have a little bit of a rest and it's better for the girls not to always have their mom everywhere they are. She will be going to college here locally next year and she said that she wants to do this for as long as she can for Rebecca. What a blessing! She interpreted yesterday and I just love her and more importantly Rebecca has really taken to her!

My husband and I both work full time and we did not know how the girls were going to be able to go to VBS this year and another person that we know stepped up and said that he will pick up the girls from their summer program and take them to VBS and then drive them back when they are done! Now, the girls can go to VBS!!

Our God is so good and takes care of us so well. Add these blessings to your prayers today and thank God for taking care of our family. Today is National Day Of Prayer. Our family will be attending a concert tonight and praying for our leaders. You don't have to go to an event, but please pray - if for nothing else just thanking God for providing for my family.

How Do You Keep Deaf Culture Alive?

I search for ways to keep the Deaf culture prevalent and in front of my family. Rebecca is Deaf. She will never be hearing and I don't want her to be confused about where she fits in or feel like she is less of a person or alone. We go to events with other Deaf people, I have Deaf people over to our house, we attend a church with other Deaf people, we have signs around our house with ILY, we have pictures of the family signing, etc. Everyone is our family signs and I make sure that she has an interpreter when she needs it or I interpret, when we go to someone's house I make sure that they turn on their CC'ing and we always have our CC'ing on in our house. How do you keep the Deaf culture alive in your house?

We are looking into getting a video phone so that Rebecca can talk to her friends who cannot use the phone & Rebecca is still not clear on a phone and she cannot understand what the other person is saying. When she uses my phone, she usually texts or I put in on speaker and I interpret. I'm really excited about getting a video phone for her, but also so that I can talk to my Deaf friends!

Something else wonderful happened this week that I will post about later. I will keep you hanging for a day or two.

It's All About The Friends

The other day Rebecca's rechargable battery died and the school couldn't just pop in new batteries so she was without sound. This is when I am truly grateful that we sign. I do not know what families do that do not sign when this happens. This has not been the first time that this has happened to us where she had to go a few hours without her implant. We sign and she does great.

The other day I asked her, "Do you like it better when you can't hear or when you can hear?" She said, "I like it better when I can hear". I asked her why and she said, "I can have hearing friends and Deaf friends".

Audiologist Lesson For Me

Another lesson learned in my house today. Rebecca has been asking for a hearing aid for the last week in her non-implanted ear. I called her audiologist last week and she was at a CI conference so I couldn't get a hold of her. I left a message yesterday, but she was probably busy catching up from the week off. So, I called again today as I promised Rebecca that I would and I found out that her audiologist for her CI is not the same audiologist that she sees for hearing aids. Who knew, not me!

Anyway, I made the appointment for her to be tested to see if she could benefit from a hearing aid. It's in May. We'll see how it goes.

Texting

Oh my gosh!! Where have I been?? I have never texted before and now I am hooked! It's also been fun watching Rebecca text - she thinks it is one of God's greatest gifts! I got a Pantech Duo which I am loving! It has been very user friendly and Rebecca has no problems seeing the screen and getting around on it which was my goal.

Now I can talk to my Deaf friends more than just one or two times a week! I can call them anytime just like my hearing friends. Maybe that sounds stupid, but it's true! I don't know why I haven't texted before.

Cold Case

OMG!!! I don't even know where to start about the problems with the Cold Case tonight. They made it seem like as soon as you got a Cochlear you could hear and talk. Does the Deaf community really hate Cochlears that much??! They also made it seem like you could just pick up an ASL for dummies book and be able to use sign language and understand others. It has taken me months & I still didn't catch all the signs that were used! Anyway, I have lots of thoughts, but would love to hear yours! Tell me what you thought and what you noticed. I really like Cold Case and was disappointed on how hearing and the Deaf were portrayed.

SSDI????

Rebecca's psychiatrist mentioned to us that we should get her started on SSDI now because it would be easier for her to get SSDI before she turned 18 and it would be easier for her later in life. She has no perpherial vision and no night vision right now. I tried to get an exact range of perpherial loss, but the doctor wouldn't do it because of her age so I'm not sure her exact perpherial loss - she is legally blind per our state. So, I do think that she would qualify.

I struggle with this choice, like I have with everyone other choice. I'm not one to take government handouts and I feel like by getting her SSDI I'm telling her that I don't expect much from her. I read the following article that really got me thinking and leaning more towards getting SSDI...

Nine years ago, a project funded by the U.S. Department of Education began to track what happens to graduates of certain student groups four years after they graduate from high school. One of the groups included in the study were deaf students. The point of the study was to measure the impact of the 1997 Individuals with Disabilities Education Act (IDEA). The information for this part of the study was collected in 2005, then studied and sorted and presented in late summer 2006.

So - how many deaf high school students go on to get more education? The survey says slightly under 51%, with a 5.8% margin of error (MOE). Of that half, 21% will attend a 4-year college, 26% will go to a 2-year college, and 13% will attend vocational-technical training. Among all the students surveyed - those who earn a degree and those who don't - 56% found jobs. Their average hourly wage was $7.70. Four years after (high school) graduation, just 29% are living independently. It's not clear from the publicly available study data whether the deaf students surveyed attended mainstream high schools, state deaf schools, or both.

An average wage of $7.70 an hour makes the other low number - 29% living independently - easier to understand. This is a reasonable wage for a teenager
living at home, but it's not a living wage for adults with student loans and other obligations.

By any measure, an educational system where 71% of the graduates cannot live on their own is not working.

This got me thinking if I do not get her SSDI now and she has a difficult time getting it later in life am I really helping her? Would I be of more help to her getting the SSDI started now so that when she is ready to go out into the world she has a little nest egg to get started and will have a monthly check coming to help supplement her income. If she does not need it, great! But if she does, then how would I feel looking back on this decision?

I still struggle with the word disability and accepting income based on a disability because to me Rebecca is very abled, but based on the study above if her income is only going to be around $7, I do not know how she can live her life fully on that income.

I'd love to hear ya'lls thoughts on this. What has been your experience with SSDI? Was it difficult for you to get started?

Easter Worries For Nothing

Easter went fabulously! As is ofen the case with me, I worried way too much for nothing.

Saturday, we went to a hunt at a local park where you could see all the eggs - it was wide open and they were good sized eggs. That was my test - she did great, actually she got more eggs than her sister! We came back home after the hunt and lunch and made colored our eggs. I got really big eggs. We also let them sit in the dye for 4 hours so they were very bightly colored eggs. After dinner we came back and the girls decorated the eggs more.

Sunday, the girls got up and we went to church. When we got back the Easter bunny had left them gifts and had hidden the eggs. I had made a map of where all the eggs were, but we didn't need it. Jasmine helped her sister a few times by pointing them out, but she found most of them herself by feeling around the tall patches of grass. There was 30 eggs in all (2 prize eggs), each of the girls found 1 prize egg, Jasmine found 17 and Rebecca found 13 regular eggs.

After the hunt we went to lunch that I talked about in my previous post. Thanks to everyone for your suggestions, we may need to use them at some point but for this year she didn't need much assistance.

Deaf Working In Our Community

Today we ran across our first Deaf working person in our community. We were in line at Golden Corral and the lady getting the drinks for everyone was telling the person in front of us that she is Deaf, so please look at her when ordering. We overheard and I could barely contain myself. When she turned her head I saw that she was wearing a hearing aid. I asked her if she was Deaf, she said yes and then she asked if we signed. I signed back yes and then signed our order to her. I was so excited for Rebecca to see her and Rebecca signed to her as well. When we were leaving I asked where she lives and she lives in the same town that we do. I hope that we see her more. It was good for Rebecca to see another Deaf person working. I know that Deaf people work, please don't think that - we just have not ran across any Deaf people in our community who are currently working when we see them. I hope that we brightened this young girls day a little bit and I know that she encouraged me and brightened my day. I asked for the manager while we were there to tell him thank you for hiring her, but he was not there. I will send an email and hopefully it will get down to him. I want to thank Golden Corral for hiring her, but also for not just putting her in the back cooking. I am grateful that she was the first person that we saw when we were there & I want to thank the manager for doing that!

Rebecca continues to be in shock when we see others who know sign language or who are Deaf when we are out. It takes me saying 3 or 4 times saying that they are Deaf before she really believes it. When we were in Oklahoma we ate breakfast at a little restraunt and a waitress there took ASL in school so she could sign. We watched Marlee Matlin on Dancing with the Stars and Rebecca's jaw hit the floor again when she started signing.

I love that God is placing people in our lives to be an encouragement along our path.

Happy Easter Everyone!! BTW...Rebecca is going to be Baptised next Sunday. It is going to be a great day for our family & our Church family!

I'm Ready For Summer!!

We went camping this last week. It was incredible! We stayed in an RV, so I'm not sure if you really consider that camping, but we had a great time! The girls built a fire, roasted hot dogs & marshmallows. We played games by the fire with the assistance of a big light and a bowl for the dice. We also played games inside. The girls taught me a new game that they had learned at school, Mancala. That was a lot of fun. The RV had a blind that separated the master from the living area where the girls were sleeping we turned the light on in the master & we made animals out of our bodies while the rest of the family tried to guess the animal (sort of like a really big shadow puppet or like shadow dancing). The girls' great-grandmother lives not too far from where we were staying so they also got to spend more time with her which was great too! They also got to see some of their cousins that they haven't seen since Christmas.

We also flew kites. This was fun, we had our "usher" moments when Rebecca couldn't see hers because it was too bright so we just explained it to her. She still enjoyed herself and was proud that the string was all the way out.

When we were at the Texas/Oklahoma border, the girls got out next to the Texas sign and did several poses together and separately. One of the poses, Rebecca signed love & Jasmine made the "x" like she was signing Texas. I love it when the sign in pictures!! We have pictures of family members signing in our house - mostly ILYs. I just love it because it is like they are talking through the pictures - it makes them much more memorable.

We had to come back early because a nasty storm was headed our way, but I was grateful for the time that we had. Rebecca's school audiologist also said that she noticed Rebecca's non-implanted eardrum was red, so we had an ENT appointment late that afternoon. We came home, unpacked, watched a movie, the girls took naps & then we went to the appointment which was pointless - her eardrum was fine. This was her first time at this ENT and the only information that they gave me was that she was profoundly Deaf - "really!" I wanted to shout! I'm shocked!" Anyway, I didn't, it was just a total waste of time but I was relieved to hear nothing was wrong with her eardrum. I was glad that I was already off work and that Rebecca didn't have to miss any school for this appointment.

The last day of our spring break together I took the girls shopping for their summer swimsuits and then we went to an indoor water park and let them have fun for a few hours. The one thing that I do not like about this park is that their lifeguards rotate every 20 minutes or so. I try to let the lifeguards near the deep end and around the areas that I'm most concerned about the girls know that Rebecca is Deaf so that they won't keep yelling at her if they need her attention. I am always within distance, but she's 10 and needs some space. I also have her sister stay close. One area that I tell is at the slide because we can't all go down together. This is difficult when the person changes every 2o minutes. I ended up having her sister go up with her and then staying down at the bottom. After swimming we went to the girls favorite hot chocolate place and had hot chocolate and rice crispy treats. Then we went to go see Horton Hears A Who. There are no captioned theaters in our area, but Rebecca seemed to be fine with this movie. I've noticed that cartoons are more difficult for her because she can't read the lips. This movie seemed to be fine and she understood the point. It was another great day and the girls were wore out by the end of it.

I can't wait until summer and spring break has gotten me antsy! We have to decide on a summer program for the girls and plan our summer. During the summer we will go to Sea World San Antonio, SEE2 Conference, Sports Camp, Rebecca will to go to a hearing camp, both girls will go to a foster/adoptive camp in East Texas, VBS & Rebecca will be adopted somewhere in this summer (hopefully towards the beginning). Last year it worked out that there was something every 2-3 weeks. We will also try to fit in more camping (of course).

Easter Worries

I know that I'm going to sound like a moron, but I'm going to ask anyway. Rebecca has no perpherial vision and cannot see things underneath her. I starting thinking about the Easter egg hunts and how that is all about searching for an egg. I starting thinking of what a mess my yard is going to be with the eggs that she steps all over. Is there a way to make this easier? I don't think that bright colored eggs would be enough, but I was thinking maybe if I made paths and then had her walk along the paths trying to spot the eggs to the right or left of her?

Does anyone else have any other suggestions?

Should I make it seperate hunts? One for her and one for her sighted sister?

Learning Each Others Language

Rebecca and me are still learning each others languages. I am taking an intermediate signing class for the second time. Last week my teacher was out and so our class went the advanced class. I am definately an intermediate signer and I would say that Rebecca also has an intermediate language base. We still have a long way to go, but I look forward to the journey of getting there. I don't know how long it takes to become a fluent signer, but I know I've been signing for 6 months and I still have a lot to learn.

We are also still learning how to talk to each other. I'm learning how to explain things so that Rebecca understands it the first time instead of me repeating it 4 or 5 different ways before she "gets" it (or gives up, I'm not sure). She is also learning how to talk to me so that it doesn't take that much effort on her part. I know we each get frustrated, but it is improving - we are just stuck on intermediate and I'm ready to be advanced.

Is There More Deaf In The Media Or Is It Just Me?

Do you know how when you are thinking of buying a new car or just bought a new car how you start seeing that car everywhere? I'm wondering if this same phenomenon is happening to me with Deaf in the media or if it just really prevalent this year. So far this year I have seen the following:

1) Superbowl Commerical in ASL
2) Disney Commericial in ASL
3) Marlee Matlin Is On Dancing With The Stars
4) Medium on NBC portrays a Deaf child who is kidnapped & Alison looses her hearing
5) Extreme Home Makeover had a deaf-blind man in the Hughes Family episode.
6) Deaf Child's Invention in Dallas Morning News
7) The L Word
8) Nip/Tuck

I don't know if this is something new. I'm sure that there's more that I didn't see or hear about. It just seems like everytime I turn around lately, there's something in the news or on television. I think it is great as long as the character is portrayed acurately. I have noticed other Deaf people on television in the past, but now it just seems like there is more.

What A Day! Thank You For Your Prayers!

What A Day!!! What A Day!!! What A Day!!!

Rebecca's teacher is amazing! Her school has blown me away on more than one occassion, but I can not thank her enough for this one. Her teacher emailed me for some family photos and I sent her some. The class was going to talk about families (is that timing or what??). I sent photos of Jasmine and Rebecca and then a picture of all of us together. Her teacher emailed me to let me know about the day. One of the emails from her teacher said, "She smiled as she said "No more move". We talked to Rebecca tonight after church (the last amazing story) and she definately does not want to move and wants to stay here forever!! Can you see my smile from there? Thank you so much for your prayers! Now my girls will be together forever! Now can you see my tears of joy? Our next struggle is that Rebecca thinks this is going to happen tomorrow, but we will work through that one too.

Next amazing story!! We have been looking for a therapist for Rebecca since summer (since we knew that she would be coming to live here). Behaviorally Rebecca is awesome most of the time, I mean she is 10. Socially & emotionally she needs some assistance. She also will just need help with the family concepts and it is nice to have someone to talk to that is not in your family. Our struggle with the therapists have been distance, do not accept Medicaid or does not sign. Rebecca really needs a therapist that signs. Having an interpreter is great, but is very hard for her. Because she does not have perpherial vision it is hard for her to see the person talking and the interpreter - she moves her head between them but I have noticed that she does not get much of these conversations. So, the optimal thing would be to have a therapist that signs. We are not against driving Rebecca to therapy at all - we have driven many miles before to therapy with her sister but since Rebecca has to get up at 5am, there is only so far that we can go and it still be good for Rebecca. Today, I got a referral of a therapist (like the 100th time this has happened because we have everyone looking) and I left a message for him. He called me back - I ask, do you sign? YES....little fireworks inside me start to spark. I asked, "Where are you located" THE NEXT TOWN OVER FROM US & WORKS WITHIN SPITTIN' DISTANCE FROM REBECCA'S SCHOOL ALSO!! (The fireworks start to take over and are going off...this guy probably thinks I need therapy because I'm so excited) We talk about Rebecca a little bit and her needs. He has an opening and wants to evaluate her on Monday! (WIPEE!!) Just one more thing...payment..."What insurance do you have", he asks. I say since she is a foster child still, she is on Medicaid. "GREAT, he says - that is no problem". I can't control myself any longer. He is an answered prayer! Incredible - we have a therapist!! I start to dance a little bit and I find myself humming later in the afternoon! I can't believe it - a therapist that signs, is close & accepts Medicaid!!

Believe it or not there is still more to this unbelievable day!! Every since Christmas Rebecca has been asking a lot about Jesus. We get out the 5 Bibles in our house - all that say scripture differently. We have an old set of Children's Bibles that I grew up with, a childs Bible that would be for like a 4 or 5 year old, a picture Bible and then a 8-12 year old Bible and then we have another Bible that is not a complete Bible but breaks down the main stories in the Bible. I also get out her Word Book & the picture dictionary. When I start telling a Bible story, I review each one and find the story - if it doesn't have the story, good one less book. I try to find the stories that are in each one so that she will get different pictures and different views of the same story so that it will stick. I look over each one and decide which parts from which books do I think will be the best. I then learn all the signs and we start. This takes a bit of preperation, but is worth it. I tell the story and ask questions to make sure that she understands. Anyway, this has led to her asking even more questions about Baptism - we are Baptist in case you are wondering. Our church has a class that the kids can take to specifically make sure that they understand what it means to be a Christian & what Baptism is. My friend and one of Rebecca's interpreters offered to go to the class with her and interpret for her. I was worried that Rebecca did not fully understand, but my friend says that she definately understands and she was impressed by Rebecca's answers. I could not be a more proud mamma!! I will be calling to schedule Rebecca's Baptism soon.

Our God is so good!! Thank you to everyone for your prayers! What A Day!

Adoption Struggles

One of the rules of the placement agency that Rebecca is with is that she understands what is happening to her & agrees to the adoption. I agree with this philosphy whole heartedly, adoption is a beautiful thing & I would want Rebecca or any child to be able to fully appreciate it. We have been working with Rebecca for four months trying to explain adoption. Concepts are difficult for her as they are for many other children. Imagine if you could only remember going from family to family, would you think that anything else was normal? She thinks that all children are moved that way and that families are just temporary & then you change. So, this has been a very hard thing to convince her otherwise.

ADOPTION had never been explained to her. This bothers me very much! Someone along the way should have taken the time to explain to her that she is waiting for a home where she can live forever. She knew all of those words except for forever when she came here & it could have been explained to her a different way - we used 100 years at first.

For the last 4 months we have taken every opportunity to try to explain this to her. In Texas, the child has to be in your home for 6 months before you can legally adopt & according to our agency she has to understand what is happening. So, that was our timeline - we need to have her understand adoption & have her adopted in 6 months. If it takes longer than 6 months, fine but we would like it done as quickly as possible. Her sister took 1 year to level out and get through the legalities of having her moved into the adoption unit. When Jasmine was moved to the adoption unit, each of her siblings were also moved - so Rebecca is ready to be adopted!

Rebecca wants to change her name & we have told her that is something that can be done when she is adopted. This has started up many of our adoption conversations with her and gives us a chance to talk to her more about adoption. Most of the time the conversations end in frustration because she just does not understand or because it gets derailed into another topic.

Well, she brought up the name change again & we started talking about adoption again. This time though, she said, "I do not want adopted - I like change families". Okay, so she understands that if she is adopted she will not change families - Success right???? She says that she likes our family and is happy that she is with her sister. She thinks that her sister is going to move with her in a year or 2 years. We have told her that her sister is not going to move with her because her sister is adopted, so she stays here. She said no & started naming the next family that she would like to go to.

I understand how this could happen looking back from her point of view, but URGGGG!!!! Why didn't someone explain to her that those families are temporary & that adoption is a good thing. That is our next step with her, we are going to point out all the adopted children we know and celebrate their adoption so that hopefully she will put together that adoption is a great thing & something to be happy about.

I have talked to our casemanager & perminent foster care is a solution if she really just does not want to be adopted. I just feel like she deserves more than that - she deserves to be adopted. I know it's just a piece of paper, but I have seen what that piece of paper can do to a childs security & to us as a family. We had one month that we did not have paperwork to do or caseworkers, CPS & therapist going through our home. It was really nice & I would really like to have that again. But if temporary foster care is really what Rebecca needs until she is ready to face adoption, I'm there. We are willing to do whatever we need to do to keep these girls together. She should be with her biological sibling-they will need each other in a few years.

I'm only writing about this because I feel like the people who read this really care about Rebecca. Please pray for her to understand what a gift adoption is & for her to accept it. Help her to understand that moving from home to home to home is no way to live. We are sending Rebecca this summer to a foster/adoptive camp for kids & I hope that will also help her see other kids who have been adopted and how proud they are. Her sister tells the cashier at the store that she is adopted - she is super proud that she is adopted. It just has not spilled over onto her sister yet.

We have tried several things with Rebecca to help her understand : Adoption Stories on TLC, books, workbook pages, her sisters story, websites, magazine pictures, etc. If you have suggestions, please share - I want to give Rebecca the forever adoptive home that she deserves.

Proud Of Our Possibilities

This week I got a good dose of the deaf/blind world...let me explain...

Tuesday, we went to sign classes. Wednesday we went to the audiologist, got Rebecca fitted for molds, tested again with her implant and tried to get the FM system to work with her CI for school. Friday we got the FM system working at her school (woo-hoo!) and I had a meeting with DARS to discuss vision services for Rebecca.

I had no idea what was available for the blind in Texas! Wow! I'm impressed! I also learned the Rebecca is legally blind right now & what that means. I thought that blind meant that you couldn't see - it's not! Rebecca is going to be evaluated and then will start white cane training. For right now we are telling Rebecca this will help her in the dark. She does not understand blind and we are afraid if she did understand it would scare her. So, we all agreed that the best way to tell her was "this is going to help you in the dark". Her light times will eventually become dark times and she will know how to get around in the dark. That is the goal.

We had this conversation with her to make sure that she understands and she is excited about getting the cane. We used a little horse on a stick to give her a visual cue as to what it is going to be & she now wants to walk around with the horse. So, I think she will be fine and take to the cane very well.

They did not think that teaching her braille right now was a good idea because she does not need it right now & she may not need it for a very long time. They said that even if she learned it right now she probably would not retain it & would have to learn it all over again later. Rebecca is learning so much right now that we also agreed that it would just end up being something else on her plate (and it's not critical right now).

The school is trying different colored laminates with her to see if that makes a difference with her, but so far it hasn't changed anything.

Texas has camps, sports leagues, career readiness type activities, ropes courses, family fun nights, mentoring, confidence building activities and O & M (obviously). They are also going to send someone to our home to evaluate how things could be arranged differently here to help Rebecca further. They will also work with my family on how to properly lead Rebecca when she does need it. They will help us with technology devices that we could have around also. I am so excited about all these opportunities for her!

We are still working on finding classes on tactile signing so that we can start using it some with Rebecca. So far, we've gotten nothing close to us for this but will keep looking & now I have DARS helping me look also.

They gave us this form that asks questions that were very telling of Rebecca's sight and really made me think about it.

Is she afraid of the dark or shadows? YES
Does she have difficulty seeing stars at night? NO
Do bright lights hurt her? YES
Does she have difficulty finding small objects that have been dropped? YES
Does she ignore/fail to see other standing/signing by her side? YES
Does she have a hard time seeing sign language in dim light? YES
Does she shuffle her feet? SOMETIMES
Does she bump into things? YES
Does she stumble on stairs or curbs or have problems on bumpy ground? YES
Does she walk with her feet wider apart than most children? YES, especially running

I had a bunch of other questions too, but I thought those were interesting and telling of where she is visually.

I went to the meeting on Friday very worried about the blindness part of Ushers and left feeling a lot better about it. There's a lot of services and ways to help Rebecca and I feel like we can tackle this as a team. I'm so glad that I went and I'm ready for the next step.

I am also proud of people within the deaf blind community that I have only seen through the internet. I'm proud of how they are working on getting things changed and the perceptions changed in the deaf community. I have seen peoples faces and them back off when I say that Rebecca has Ushers Syndrome. It's sad & it needs to change. Deafblind is not a death sentence & it can be worked with if you will just take the extra time. These people are extraordinary & I'm proud that Rebecca will be in this community. I'm hoping that by then Deaf and Deafblind will be considered one community and are not seperated and she will not be segragated by the Deaf community. Most deafblind people are Deaf first culturally & that is why it is not called blinddeaf, but deafblind! Please make small changes to accomodate so that you can get to know these beautiful people - they have a lot to say, please let them speak their minds and have the open mind to listen.

My Love/Hate Relationship

As you have probably figured out, I have a love-hate relationship with the CI. I love that she can hear me when she is running out in front of something & I need her to stop. I love it that she can hear her cute little Valentine's teddy bear. I love that she can hear my voice when I say I love you. I can think of several occasions like those that I'm grateful for.

Then there's the other side where I feel like I'm taking away from her culture & that I'm deceiving her Deafness. We do sign and we are around Deaf people with and without CIs as much as possible. We have pens, shirts, posters & all sorts of Deaf pride items around our home. I feel like I am embracing the Deaf culture, but I still struggle with the CI. I know that Rebecca will lose her sight and I feel like being verbal and hearing would help her once she loses her sight. I know that there's tactile signing (which we will hopefully start learing soon : still looking for someone to teach us -hoping to have an update on this tomorrow) which we will definately teach Rebecca. I also don't particularly enjoy the audiologist visits and all the molds, batteries, dry packs, FM system, etc. that come along with the CI.

Part of me thinks of the CI as another tool like white cane training, braille or other tools that will will assist her with Ushers. I want to give her as many tools as I possibly can. I have a fear in the back of my head that Rebecca will grow up and say, "Why didn't you...". I guess that's a common fear of any parent, but I feel like it is amplified with her. I especially get this fear around other children with CIs that are further advanced than Rebecca. I think how much more can I be doing? Right now I do not have her in Audio Visual Therapy, but she has done this in the past. I know that this is something that we could add, but we are focusing more on giving her language than verbal skills.

I've heard people on the internet with CIs describing themselves as on the fence, not really in the Deaf world, but not in the hearing world either. I feel like that as a parent - Do I push for more verbal & hearing or more signs??? I don't like this feeling & I wish that it had been me who had chose or not chose for Rebecca to have a CI. I don't want to say that I've been forced on the CI, but I have chosen to accept a child with a CI. My plan is to let Rebecca find her own path, we are giving her tools to help her with whatever path she chooses. We are not going overally verbal, but do ask that she speaks as she signs. We do listening exercises periodically. We learn signs all the time and use total communication in our home. We will send her to an ASL camp this summer as well as a listening camp. She will also go to a camp for foster/adoptive children which will have in interpreter. There will also be VBS, Cheerleading camp, etc which will not have an interpreter for her.

I don't truly feel that either way is perfectly right & I don't know if I have that right to say what is right or what is wrong for her. She is going to have to make that decision for herself as she gets older. All that I am trying to do is give her as many opportunities as I can, so that whatever she decides she will feel comfortable with that decision.

Make Some Noise!

The kids at Rebecca's school preformed this song & I think it is what all parents try to instill in their kids. Enjoy!

Hannah Montana Lyrics

Wouldn't it be great if we all just make some noise and know that there is nothing wrong with just being ourselves, that is more than enough! Don''t ever let anyone tell you that you're not strong enough!