Friday, February 22

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.

Wednesday, February 20

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!

Sunday, February 17

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.

Saturday, February 16

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.

Thursday, February 14

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.

Saturday, February 9

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!

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!

Wednesday, February 6

Moving Onto The Vision Stage...

The scaryiest part of Ushers for me is the blindness. I have never been around blind people, so maybe that is part of why it is scary. - it is an unknown world I have a meeting with the state to discuss what services they could offer Rebecca. I'm hoping it will make me feel more comfortable as well.

Her VI and the state are talking about getting her white cane training. I'm excited that she will be able to receive these services early in her life. I think it will really help her. We will also talk about when to introduce braille. I'm not sure if she is ready for braille right now, but I'll listen to what they have to say. They are also trying to find a place for my family to take tactile signing training. I have not been able to find anywhere close for us to learn tactile and I'm really looking forward to them helping us with this.

We have started our second semester of sign language classes and yesterday I increased my vocabulary another 36 words!! WOO HOO!!

The state also said that they could have someone come out to our house to see if there are other ways that we can arrange our home for it to be easier for Rebecca.

We took down our Christmas lights a couple of weeks ago and Rebecca was really worried about us taking them down because it really lit the path for her to see the bus in the morning. So right after my husband took them down he put out the rope lights along the winding pathway and put up a flood light that we will also turn on to help Rebecca see down the driveway. When we say our prayers at night, we always say thanks to God for something that day. My husband said that he was thankful for the lights. That perked Rebecca's interest and then she had to know all about it. My husband said at first, teasing her, that he was grateful that the Christmas lights were down. She started saying, "how am I going to see now?", and my husband said that he had a way. Well, then she had to know and insisted that we show her now. We turned on the lights and both of the girls found their way out independently and were dancing in the driveway!! It was beautiful!

It reminded me of a mastercard commerical, rope lights : $30, floodlight, $ your child independence....priceless!

Sunday, February 3

Cute Times In Recent Days

I got 3 stories to tell that has happened in the last 3 days. The first one was yesterday. We went to a lunch at restaurant (just Rebecca and me - one of our moments), this is a place that we go to often and apparantly whoever was doing dishes was being really loud. We moved farther from the kitchen, but it was still really loud. Rebecca put her finger in her ears to stop the sound. I asked her if that helped and she said not really. I couldn't get that picture out of my head all day.

Today in church, the kids all learned a song in sign language and preformed it in church. Rebecca's eyes got so big & she just couldn't stop saying, "Oh my Gosh". It was wonderful!! I am so greatful for my church and all that they have done to welcome Rebecca and anyone in the deaf community. Rebecca is the only child in our church that is deaf right now. I hope that others will start to join and we will be there to help welcome them.

The other night Rebecca came home saying that she needed money for Monkey Plano. I had her sign again thinking I must have misunderstood her "Monkey Plano??" Plano is a nearby city and she even fingerspelled it for me the second time. I just still did not understand. I asked her how much money and she said $50 for Monkey Plano. Ok, now I must know more - I'm not giving my 10 year old $50 for a monkey plano (whatever that is). Anyway, I emailed her teacher who was very responsive and said that there was a monkey who needed help and the kids were asked to bring in money to help transport the money to Florida. .50 would be great! So, the Monkey Plano mystery was solved. Rebecca got $1.00 out of the money that she has saved and gave it towards Monkey Plano - whose name is Pat, but in our house will always be known as Monkey Plano.

Anyway, these are just a few chuckles that we get around our house. God Bless Monkey Plano!!

Saturday, February 2

Ushers & Blue Film????

Rebecca's school amazed me!! A couple of weeks ago her VI from her school told me that she was going to a class to learn more about Ushers. I figured, she probably does a lot of school districts and this was just part of her training so I didn't think much more about it. I had asked when Rebecca first joined the district, how many other children did they have with Ushers Syndrome. They said that there was only 1 other child in high school, so I thought most of the research on how to help Rebecca would need to fall onto me.

Yesterday I went to the school and talked to her deaf ed teacher briefly who said that she also went to this class on Ushers Syndrome (gasp!). She said that one of the things that she is trying to get implemented (another gasp!) immediately was some blue film that can be put over worksheets, books & even the whiteboard to help Rebecca see it better. It makes the black words turn white and the background blue. Has anyone ever heard of this? I did a search on the internet, but I did not find it anywhere.

I am so impressed with Rebecca's school taking the initiative to find out ways to help her learn better. The only items that we had implemented in her ARD were things like close to the board and the interpreter, things need to be put directly in front of her since she has no perpherial vision, speech & VI, etc. I would like to get this mysterious blue film for around the house as well, so when we are reading together I can use it so that she can read with me.