Sense Of FamILY

Decisions, Decisions, Decisions

2009-06-16T09:25:00.003-05:00

I feel that as a hearing parent with a Deaf child we have so many choices to make that we have no idea how to make! We are constantly told do this or don't do that. Each choice that we have made has had pros and cons and people judging me for the choices that I ended up making. I try not to take it personal, but it's hard...most of the time I end up still second guessing myself and never feeling satisfied with the decision that I made.

I have seen other families go through this also. It is very disheartening and I don't feel like it is going to stop soon. I don't know if it is easier for Deaf parents of Deaf children, I guess since they have been down a path they knows what worked for them and what did not. I do not have any deafness in my family and did not know anyone who had experienced this journey.

Some of the decisions that we and/or other hearing parents have had to make...

1) CI or no CI
2) Mainstream or no mainstream
3) public school or Deaf school
4) Sign or no sign
5) SEE or ASL

Each of these decisions have serious counterparts and I often feel that hearing parents of Deaf children are not given credit for how many decisions we have to make concerning our child. I know since I have friends of other "special needs" children that their choices are more cut and dry. They make choices that are life and death a lot of times. None of the choices above are life and death for our children. Some will make life easier, but then you have to ask yourself - easier for who and why are you really making that decision?

The vision decisions that we have made with Rebecca have been much easier and much more accepted: white cane training, testing, vision training, etc. There is nothing controversial about these items - no one questions what is right for you child when they are going blind. This is what sets Deafness apart from other disabilities and why I have found the correct path for my daughter to be so difficult! When she gets out her white cane everyone knows that she can't see, when she puts on her hearing aids everyone knows that she can't hear, but when she puts on her CI it is different. All of a sudden, hearing people think that she's not Deaf anymore and some Deaf people think that she's not Deaf enough anymore! My daughter is fine with or without her CI and either way, she is still Deaf!! She is at camp for the next 2 weeks and did not take her CI with her - guess what, she's not less Deaf or more Deaf because she does or does not have it. What will happen is that people will be more accepting of her without it there. That saddens me to say, but it's true.

I have talked about how I feel about the CI several times on my blog and I am proud to say that my daughter is fine either way. She is not dependant on her CI. Some situations she prefers to hear the sounds, but is fine without it also. Her voice does not change when she has it on or off, her signing does not change - nothing about her changes!!

I wish the world was more accepting and understanding of the choices that we make for our Deaf children. It's not easy and sometimes I wish it was as easy to make those decisions as it is for my other child or for her vision impairment. I am trying to embrace the decisions that we make and accept them as the best for her, but I don't know how I will truly know what is right until she grows up and tells me for herself. Until then I pray that God will lead my every decision and that we are doing what is best for her and not for ourselves only.

When Do We Start TSD?

2009-06-13T22:05:00.003-05:00

Okay, so I am sitting my the dorms at TSD (Texas School for the Deaf) and wondering if this school may be a good fit for Rebecca. The choices that you make as a parent of a Deaf child are so HARD! Every decision we have had to make has had positives and negatives to it. This is no different. Austin is a long way from home!! This is a 5 hour drive from our house in our small town. Rebecca is like a different person when she is around other Deaf children and she just blossoms. I know that she would enjoy the school here. There is not a doubt in my mind that this school would not be a good fit for her, but is it a good fit for our family??

Rebecca has been a school which uses SEE for 2 years, TSD uses ASL. We have always exposed her to both, but used SEE primarily since her school uses SEE. I am trying to get my SEE certification. It would also alter the life of our other daughter who will be entering 5th grade. She has never had consistancy in her life before and our home and her school have been her rock. Moving would set her back again! I bring up moving because when Rebecca comes to school here, we will move here! I do not feel comfortable not knowing her friends or just leaving her days without seeing her or knowing who she is with (I know, I am a control freak!).

We are leaning towards waiting another year, then moving the girls when they both start middle school since they would be changing schools anyway. Maybe that would be an easier transistion. I believe that regional dayschools and mainstreamed school are great for exposure to the hearing world and has taught Rebecca a lot, but a Deaf school would give her such self-esteem and she could participate in so many activities. At her school, there are no Deaf teachers, no Deaf adults working there at all! Here, Deafness is all around you. She would have wonderful role models and feel confident that she could grow up and do whatever she wants! The Texas School for the Blind also works closely with TSD and she would receive great care from them as well as her vision declines.

So, my dilema is not whether or not to send Rebecca to TSD, it has become WHEN do I send Rebecca to TSD?? She has already stated that she wants to start here next year. I am not sure that is the best solution for the whole family. I think one more year will not harm Rebecca and we can gather our finances and prepare for the move to Austin next year. Anyone else gone through this??

Summer Has Arrived!!

2009-06-05T10:54:00.004-05:00

Well, summer is finally here and the plans are coming alive with summer activities for our family. We will be in Austin most of June, then it is off to Oklahoma to grandmas. We are also going to Arkansas to look for diamonds and to San Antonio to get wet at Sea World. We also have camps intertwined with all of that!!

This is our 4th summer with kids in our home. One thing that I have learned is to keep the kiddos busy and looking forward to something. We have everything spaced out so that something happens every 2 to 3 weeks! We will also do things around here like Six Flags, nature museums, zoo, movies, etc.

Next Wednesday is our appointment at the Retina Foundation and Tuesday we have a representive coming from DARS to help us teach Rebecca how to do her chores more effectively. She will be visiting periodically thoughout the summer.

Both girls will be in 5th grade next year! It is almost impossible to believe, only one more year until Jr. High! Scary!!

Rebecca almost passed her TAKS test (standardized testing in Texas) and is only short a little bit in her reading. So, in our spare time (yeah, right), we will be working on reading with her to help her be able to ace it next year.

Jasmine had no meltdowns at the end of the year which was a great thing! She handled her end of year anxieties much better this year.

Time to Play Catch Up

2009-05-19T11:32:00.003-05:00

I haven't been on here for a while and several things happened while I was away...

I went to this awesome event organized by our region. They took the kids and did role playing with them and taught them a play while the parents cooked with blinded goggles. I chose the pair of goggles that were most like what Rebecca's sight will be in the future. Her VI was there at the event so he helped me choose the right one. It was really difficult to see, I had one pinhole where I could see clearly if I squinted really hard. I had some light from the bottom but not a lot of clear vision from it. My left eye was completely covered.

We made pudding first. Sounds easy, right? WRONG. I had to measure milk, put the powder in the bowl and then mix it. I figured out how to use my hands to measure the milk and found where the bowl was, the hardest part was knowing when it was all mixed. I am so used to using my eyes to know that it is complete so I probably over-mixed it. Next we crushed OREOs. I didn't even use my eyes for this. They were worn out from the pudding, so I closed my eyes and felt my way through the OREO portion. Next we added gummy worms to our cups of pudding and OREOs. The organizers really helped us with this. After we added the worms and the crushed OREOs, we were told to add a spoon. This really helped me be able to feel around to know which cups still needed worms and OREOs.

It was a great eye-opening experience for me to experience just a moment of what my daughters life will be like. Two wonderful women came and talked with us about their experiences as blind women and we were able to ask questions about what their parents did that helped them and which things hindered them in their lives. We then ate lunch together with our children, enjoyed the desserts that we made and then the children performed for us (goggles were off by then).

We have also went to the Retinal Foundation Of The Southwest recently to check Rebecca's eyesight against what it was 4 years ago. We had a great interpreter at the appointment that actually grew up with a family that had 3 children with Usher Syndrome. I love how God places the right people in our lives! They did hours of testing and it was very difficult for Rebecca but I also believe it was very important for us to know the results. The nurse has called us and said that they found an extra mutation in Rebecca's Usher Syndrome called CI mutation. They would like to talk with us about doing a clinical trial. They explained to me that this is very rare and want us to come back this week to give blood and discuss it further with us.

Rebecca is making amazing progress in her language skills and will be going to the Texas School for the Deaf this summer for 3 weeks! We will be staying with her for 3 days and then she will be there for the rest of the time without us. This will be very hard for our family to leave her there but summers are terribly difficult for her since we do not have a lot of Deaf children in our city.

I am also studying to get my interpreters certification so that I can work as an interpreter at Rebecca's school. This would allow me to be home more for my children and have off Christmas, Spring, Fall & Summer breaks. Please pray for me as I study. I have only been signing for a year and a half, but everyone keeps telling me that I am ready. I wish I was as sure of it as they are.

Summer Is Approaching

2009-03-21T10:32:00.004-05:00

I am starting to feel nervous about summer already! Maybe it's the Spring air or knowing that we are in the last 9 weeks of school, I don't know but I definitely feel the crunch. My husband and I both work so we pay for the children to go to summer camps either locally or other places. Most of the summer is spent in our local summer camp. Two years ago my husband was laid off right before Rebecca came which was a blessing in disguise because we did not have to pay for summer care and my children had more time to bond with each other and my husband. Last year, we sent them to the after school care summer camp which had a lady there that signed! OH - WHAT A BLESSING! Rebecca enjoyed her time there and it fine. She really missed the children and interaction with others besides her teacher who was also watching 19 other children.

This year, that wonderful lady who signed is going to school to become a teacher and is not sure if she will do the camp again :( We have signed Rebecca up for TSD (Texas School For The Deaf In Austin) camp for 2 weeks hoping that will give her some of that much needed communication with other children and introduce her to the TSD campus. That leaves about 2.5 months left to plan. We are trying to find other day camps that are local and have someone who signs, but it is very frustrating and difficult.

Jasmine has started Karate and is loving it!! We are trying to find another activity for Kimberly, but again it is not an easy task. I would like for her to take art classes, she is very artistic and I think that would be wonderful for her. Pray that we can find a class to fit our schedule and our budget for her.

New Independence

2009-03-04T20:25:00.004-06:00

I know it's a little early for independence day, but not in our house. Rebecca got her white cane!! We are also so excited that it hard to explain. Rebecca has so many things that she has had to be dependent on us for. I interpret for her often, we help her follow conversations, we explain things to her and her vision has only been something else that she had to depend on us for. When we went into a room that changed lighting or stepped outside, she grabbed on and depended on us to lead her away from danger. When there was obstacles in the room or speed bumps in the parking lot, she depended on us to make sure she did not trip. NOW - ALL THAT HAS CHANGED WITH ONE LITTLE CANE!!

Rebecca continues to amaze me with the cane and I have to remember that she can do it herself. Tomorrow will be one week since she got to bring the cane home. Since then she has went down stairs by herself, walked across parking lot and over speed bumps, went from light to dark, walked out to the car by herself to get her backpack out of the car at night. She has not grabbed for my arm or ran over anything all week! She even had a sleepover at the Fort Worth Zoo!! Her bruises are healing and for the first time since I have known her she is become bruise free!

Her having her cane has given her an unbelievable independence as well as a new confidence, but it has also given the other members of our family a chance to educate tons of people so far and has taken tons of stress off of us. We are not worried about Rebecca falling or hurting herself. We are not constantly looking for what is ahead of her - she will find it!

We are also following American Idol and Scott McIntyre experience. This has helped Rebecca to see that being blind does not stop you from following your dreams. Big thanks to Scott McIntyre and his bravery for being on that show and a great role model for my child and for so many others.

Tonight we decorated some of her white cane for St. Patrick's Day. It would not be Rebecca's if we didn't girl-ify it a little bit.

Update

2009-02-06T12:36:00.004-06:00

I think I may have spoke too soon on my last post, which has been over a month ago (how did that happen??!!). My husband went into the hospital where we stayed for 4 days. We had to juggle the kids from house to house which I am grateful that I had so much support. My car died, still undiagnosed but it will not hold oil - tried all of the cheaper fixes, unfortuately it is not any of those. We have a 1992 Ford pickup which we have also been blessed with that we are using in the meantime. Then, my husband was told that January 31st would be his last day of work. We started preparing to go through being unemployed again and then on the 30th one of the men that Joe worked with was deported back to Guatamala. Talk about an answered prayer!! So, my husband still has his job. Then Wednesday, my mother-in-law passed away out of town. We have been dealing with funeral arrangements, etc. She had no provisions for herself and we have not seen her in over 10 years.

Anyway, just wanted to catch everyone up and let you know I am still alive. I have also found Facebook which is my new passion. How did I communicate prior to this wonderful website? I have found so many old friends and many new ones.

My Christmas Season

2008-12-27T08:49:00.004-06:00

Things seem to be returning to "normal" in our household. We went to the opthamologist for Rebecca a couple of weeks ago, her perpherial vision has taken a nosedive this past year, but her central vision has remained the same. The opthamologist mentioned a surgery that could slow things down and referred us to a specialist which we will see in May. I'm not sure if surgery will be worth putting her through that for the results, but we will talk to the doctor and make our decision then.

Jasmine finally popped about a week ago. I don't know why she has to push things to the very brim and then explode before she starts feeling better, but that is her cycle and the way it works with her. She will have 2-3 hr tantrums for months and then finally one day she will absolutely lose it and have an all day tantrum, the next day it will be tantrum free and we can experience that for the next couple of months and then it will all start again. So, right now we are in happy family mode.

We were blessed by friends this holiday season so much! Yesterday, my 2 Deaf friends took our family to go see ICE in Grapevine at the Gaylord. The girls really enjoyed it! I had read on the internet that it would only take us about 15 minutes to go through it, but we chatted along the way, took lots of pictures, etc. It took us about 45 minutes. It was really cool! It has tons of ice sculptures.

We went Christmas night to go look at lights and drove through a light parade just outside of Sherman on the way back from my grandmas in Oklahoma. It was beautiful and the girls really enjoyed that.

We had a great Christmas since Jasmine's bubble popped prior to Christmas, that was the best gift for me! The girls actually got both of us gifts which was the first time they had done that, so that is progress. They had earned bible bucks with bible drill and bible drill had a store that they got us gifts from. Jasmine was sick that night so between a friend and me we picked out some gifts for her to chose from. I brought them home and then she chose who to give what to. It worked out well.

Crazy Christmas Time

2008-12-07T12:53:00.002-06:00

Joy to the world did not include my house. There is little joy to be found during Christmas in our home. Did anyone see the 20/20 (or maybe it was Dateline) special about RAD? That is my household and it is only ramped up around Christmas time. The kids start doing wierd things and acting out in wierd ways around the holidays. For example, the other day Jasmine smuggled sugar into her room (we normally do not keep sugar in our house, but I needed some for Thanksgiving). We lock the pantry at night, so I am not even sure how or when she got it - but anyway, she took the sugar and sprinkled it all throughout our house on the wood floors and tile and then there was a pile of sugar in her room. We are getting used to these episodes but they are still tiring. As I am writing this, there is an hour and 1/2 long tantrum going on in the background.

Jasmine broke her arm on the monkey bars a day before Thanksgiving so that also is making our holidays more interesting and giving her more amunition to complain about life. Kimberly is going to participate in the science fair this year and so in our "spare time" we are working on that. My car has a HUGE oil leak that started when my friend was in the hospital so we are also down one vehicle. I filed a complaint with the hospital with a local deaf advocating agency - still waiting on the latest information from that.

I have also started interpreting more at church to sharpen my skills so that hopefully I can become certified to help the Deaf in our community more. Last week, I interpreted a funeral - that was interesting.

Rebecca had her yearly opthamologist appointment and they said that her perpherial vision has worsened, but her central vision has remained the same. She was upset that she was not getting new glasses - we may still get her some new frames. We are going to a retinal specialist in May to have her evaluated further. The doctor mentioned that we may be able to have surgery to prolong her sight longer, but that it is not a cure. I'm not sure yet if I want to do that, we will have to see how much her sight would improve and the pros/cons of the surgery. We will find out in May.

So, I appologize for not blogging more but as you can see my life has been full lately. Hope everyone has a great season and I will try to keep in touch better.

Happy holidays!

Learning To Flush

2008-11-23T14:00:00.004-06:00

Jasmine has had trouble remembering to flush the toilet for 3 years now. This was not high on our priority list of problems in our family. We have tried techniques to tackle this in the last 3 years, but so far none have worked. We made a sign in the bathroom, we made up a little rhyme, we made an accronym that we said everytime she went to the bathroom, we rewarded the flushing and I'm sure there were others but I can't think of them. Well, we have decided to tackle this again - this time if she doesn't flush she must clean the toilet when I find it unflushed. Yesterday was the first day of our new attempt. She had to go to the bathroom last night, so before she went in and after she made her announcement - I reminded her of our deal. She said she remembered and went in all gung-ho to flush. Of course, she came out and didn't flush. I waited 5 minutes hoping that she would think about it and go back to flush. Nope--so I went into the bathroom and said, "looks like you forgot something - get out the cleaning supplies". She did it and didn't complain much.

Today, when we were at church in between Sunday school and service both girls went to the bathroom - she remembered to flush!!! You can imagine my excitement! I know it seems silly to be be excited over a 10 year old remembering to flush, but it is true!! I was so proud, I hope it continues.

2008-11-16T12:21:00.002-06:00

I am going to blog about my recent experience and I really don't want everyone to point out the mistakes unless you have a solution.

A friend of mine texted me that she was not feeling well and did not want to drive to PrimaCare alone. She is Deaf. I went with her and interpreted between the dr and her. They treated her for acute gastridus and sent her home. The next day, I tried calling her, texting her but she was not answering. Finally, 4pm she answered me that she just woke up and was still not feeling well. We went back to PrimaCare and she was severly dehydrated. We were sent to the emergency room. PrimaCare called ahead of time to inform them that she was Deaf and that I could interpret until a certified interpreter arrived. They got her right in, this was about 6:30 or 7pm. NOW - I am not a certified interpreter and I have only been signing since last October. I am doing pretty well, but would definately not call me fluent.

The choice for me was do I leave, do I interpret, or what do I do. I did request an interpret and they kept telling me that they were looking for someone. She was REALLY dehydrated and they thought it was her appendix or gallblatter. Her appendix was removed back in the 70s, so we were left with gallblatter. They ran a series of tests and decided she would need to stay overnight until the surgeon came in the morning. Her sister arrived and we finally got a room at about 5 in the morning. I stayed with her all that time. Her sister is relearning sign language, they were apart for many years and she just recently moved close to her sister 2 years ago. They only see each other once, maybe twice a week- so she is learning slow and I can sign better than she can.

I stayed until we got the room and they finished the initial testing. I went home, told her sister to call me in the morning when the surgeon came - I work right across the street and can come if an interpreter has still not arrived. I get home about 5:30, I need to wake up at 7 to get my daughter up for school. I get home in time for Rebecca to leave, say bye to her and go to bed. I wake up and get my other daughter ready for bed. I call my friends room and did not get an answer. I thought maybe they were asleep or out for more testing. I tried again about 8:15, still no answer. I tried again about 8:30, still no answer. I called the hospital after the 3rd time and asked if anyone was in my friends room with her - NO, NO ONE WAS IN THE ROOM WITH HER. I am a person that always wants someone with me in the hospital because nurses can make mistakes - and then add to that, my friend who was drugged up if she was asleep would not know what they were giving her.

I left my work and went straight to the hospital, the surgeon was already there, but wanted to wait for an interpreter to arrive before going over everything with my friend. When I arrived, the nurse told me that they were still not able to find an interpreter. She called the surgeon and told me that someone was there who could interpret for my friend. I told her I was not a certified interpreter. She did not seem to care. My friends sister finally arrived and then the surgeon came. I interpreted the operation choices and the risks involved with each one. Her gallblatter was going to need to be removed. My friends sister asked if an interpreter would be able to go into the operating room with her sister and the surgeon said that he would take care of that and got on the phone - I never stopped interpreting what everyone was saying. The surgeon said (on the phone), "Is there anyway that we can have a family member come in and interpret for _____?" My face fell, but I continued interpreting. I reminded the surgeon that I was not certified, but again I don't think he cared. They said that she would have surgery the next day at 7:45am. I informed my work that unless an interpreter came, I would need to stay with my friend for another day. I had my laptop so in between nurses coming in when my friend was asleep, I was working.

I will not go into all the things that the nurses did that I felt were wrong, but I had a set several nurses straight and educate them on how to work with the Deaf, for example - talk looking at her - NOT ME!! She is a person and deserves that respect. Anyway, I called some of the interpreters from church and together we took shifts. Both of them work in the school system, so could only come at night. They releaved me for about 4 hours, so I could come home and get a couple hours of sleep, say goodnight to my girls and take a shower. In 3 days, I got about 6-7 hours of sleep. Surgery day, her surgery was delayed until 1pm. Can you imagine if no one was there to tell her how worried she would have been??!!

Anyway, the whole thing was very frustrating, but I was happy that I could offer my hands to help. I went into the operating room with her until she was totally out and then I ran to the cafeteria to get something to sleep really quick. I could also only eat if someone brought me food or like this instance when she was in surgery or when a friend releaved me at night. The nurses were very nice and happy that I was there to help facilitate communication. They were never ugly to me and always asked me if I needed anything - I wanted to SHOUT - YEAH, a certified interpreter would be nice. My friend never asked for another interpreter. She was fine with me interpreting and was familiar with my hands - but I still felt that it was just wrong - she deserved better than my hands. God definately spoke through my hands the entire 4 days that I was there and I learned a lot. An interpreter from church brought me an ASL medical dictionary and I studied that at night and especially right before the surgery.

NOW - here is what I wish, and I would like your opinion or advise on this: can the hospital have a video relay phone where they could reach a certified interpreter when they needed one? I know that this is not a replacement for a live interpreter in the room. But I keep thinking what happens when someone is just traveling through our town and has a car accident. What would happen to that Deaf person - none of their family is here. There has to be a solution. I was happy to help my friend. I realize there was a HUGE risk involved with me interpreting, but I really did not see another way. They could have written notes back and forth, but that just seemed wrong too. Her sister wanted me to interpret and I feel like I did a great job. It was scary but also a great learning experience. Makes me want to get my certification and volunteer at the hospital. I heard that they reason that no interperters ever came is because several were never paid by that hospital. I am writing a letter to patient relations of the church and I am also going to make a flyer for the hosptial on how to better work with Deaf or hard of hearing patients.

My friend is doing great and is staying with her sister for the time being and my family is very happy that I am home. Please do not "bash" me for my decision. I felt and still feel like I did the right thing. I would like solutions however for future hearing impaired patients.

My personal marathon

2008-11-09T19:54:00.003-06:00

I AM SO TIRED!!! I feel like I am running a never-ending marathon. I am sure a lot of moms feel this way, but for me this is a first. I feel like I have been running a year marathon for a year now! We do not have anyone that will take both girls for more than 30-45 minutes at one time. I don't want to seem ungrateful, but by the time I drop off the girls and go back home or wherever, it is time to pick them up again and my race has continued! We spend time with each of the girls alone each week and one girl is definately easier, but I still feel like I have only slowed to a jog. Will it ever stop? or will I just collapse??

I find myself being short-tempered and have a lot less patience than I want. Then I feel guilty and have even less stamina for the next round. How can I return to normal again? or has normal gone away??? Will I ever be the mom that I was again??

My Mom Is Deaf -- What???

2008-10-23T06:44:00.002-05:00

Up until just recently when Rebecca would introduce me to her friends or new people as her mom, she would always add, "she signed a little bit". URGGG!! It used to drive me crazy. I am working my butt off to learn sign language and I feel like I sign more than just a little bit! Anyway, recently Rebecca started saying that I am Deaf around the house. I told her that I am not Deaf, I am hearing - but that she is Deaf. She says that I am Deaf because I know a lot of sign language now. I asked her if her interpreters were Deaf too because they know a lot of sign language, she said no - they are hearing.

I thought we had moved past it until last week we were in the church bathroom. Rebecca was waiting for me outside the stall and a lady came in. Rebecca did not have her implant on so she couldn't hear her at all. The lady asked her "How are you" and she answered, "Fine. Waiting on mom, she's Deaf." That's what I thought she said anyway, so I got out and when I was washing my hands I asked the lady what Rebecca said. She said she told me that you were Deaf. REALLY????!! So, in front of the lady I explained once again to Kimberly that I am not Deaf, I am hearing. She kept insisting that since I know a lot of sign now that I am Deaf.

Since this time, I just laugh it off when I hear her say it. I don't what her to think that I am NOT wanting to be Deaf and that hearing is superior or something, so everytime I approach it carefully. I tell her that I was not special enough to be Deaf. God only picks a few to be lucky enough to be Deaf. She continues to insist that I am, so I'm just letting her say it. Maybe it makes her feel more connected if she thinks of me as Deaf also.

I am happy though, that she is not saying that I sign "a little bit" anymore. I feel like I have graduated. It only took a year!!

2008-10-21T07:48:00.003-05:00

The other day we went to the Sports Extraganza for the blind and Visually Impaired in Irving. We had a great time & Rebecca came home with 3 gold metals! Jasmine ran with her in the first race to help side-guide her, but she did the other 2 events on her own. I am so grateful that events like this happen to allow our kids to able to participate in sports! There were a couple events that Rebecca couldn't participate in because it relied on hearing and she was disappointed that she couldn't do more events. She got over it and was happy with her 3! She hung them on her wall and goes in her room just to stare at them. She is so proud of herself and we are so proud of her.

This was our first event that we have been to that was for the blind. I wasn't sure how Rebecca was going to handle things, but she did just fine. She kept pointing out people to me who had canes or dogs and we just said "yeah - they have a hard time seeing also".

Halloween is coming up again and our ARD is on Friday. I feel much more prepared this year for both. Thanks to everyone for their support over the past year!

New Name

2008-09-27T09:47:00.002-05:00

Well, we decided - Sense Of FamILY it is!! Thank you everyone for your input. I will continue to write about the same 'ol things, just with a new name.

By the way, we now have Medicaid -- finally!!

DENIED??!!

2008-09-24T20:06:00.003-05:00

I wasn't going to blog about this, but now it's gotten ridiculous! We changed Rebecca's medicaid/SSI to her new name. We had to stop her SSI because the money was going to our agency, so we stopped SSI and reapplied in her new name. We had to do this as part of our subsidy with the state. Anyway, we also changed her medicaid to reflect her name change as well. The next day, we went to the psychiatrist and they said that they couldn't "see" her, but could write the prescription the same as before. She could do that 1 time. The next time that she wrote the prescription there would have to be an office visit made. Her medicaid number was denied. We took the prescriptions to Walgreens, who said that her medicaid was denied. We called everyone under the sun. Medicaid, SSI, MHMR, everyone told us to call our adoption case worker. We called her and she was wondering why we called her. We went in circles with everyone. My husband took a day and a half off work trying to get everything straighened out to find out that it takes 2 weeks to get everything straighened out between everyone. So we waited and now we are at the 3 week mark.

We received a call yesterday that Rebecca has been DENIED Medicaid, period!! We negotiated medicaid as part of her subsidy. We knew that we could not afford her $1,035 month medicine, plus her audiologist appointment, opthamologist appointments on top of the regular kid doctor visits! My husband and I currently do not have insurance, so we knew this was crutial to have medicaid! My husband took another 1/2 a day off work and went down the SSI office to try to figure it all out. The SSI office said that they needed our subsidy papers from the case worker. The caseworker has been telling us that she is waiting on the SSI office. So, round and round we go again!! Walgreens can't hold her prescription any longer and now we have to get a new prescription which is another doctor visit that we really cannot afford! We also did not receive our subsidy this month which is hundreds of dollars already that had to come off our budget. School started and we had to get clothes, pictures & school shirts and shirts for the girls extra-curricular activities! Sorry, now I'm just complaining. We are very frustrated and never would have imagined this to happen. Her sister was a very smooth transistion and we expected the same with Rebecca.

Anyway, this has been our life the past 3 weeks and it's getting old. Any suggestions??

Yes, I am hearing (guilty)

2008-09-20T08:07:00.002-05:00

I am going to give my opinions of how I felt surrounded by a group of wonderful Deaf ladies while I was the only hearing person around. I hope I do not offend anyone...

I went with a friend to a small gathering of Deaf women. This was my first experience that was more than 2 or 3 Deaf people in the same room other than my daughter with her friends. I knew what I was getting into, I knew it would be difficult for me to follow the conversations, so I tried to pick a good seat that I could see everyone. I'm not very good at sideways signing and I know that so I picked an end seat so that at least the signing would not be right beside me. Anyway, my friend introduces me to everyone and I'm watching everyone sign at what seemed to me as their fastest speed ever! I felt like a Texan plopped into New York and trying to keep up. If this was a group of hearing people I would have asked them to stop and take a breath!! All of these people except for my friend, I have never seen before. I was still trying to get used to how they signed and just watch their hands.

About 3 or 4 minutes after we arrive, I could tell two women were talking about me and then one turned to ask me a question. I must have looked like a deer in the headlights and I guess I did not respond fast enough because another lady then asked me if I was hearing. I responded, "yes" and then the looks of pity and "OooooH"s went around the table. Then the conversation seemed to slow down and one lady asked me after a couple of sentences, "understand?". I wanted to say, "yes, I understand -- I'm not stupid, I'm hearing", but I didn't - I jumped into the conversation and did my best. One lady asked me if I would prefer that she used her voice, please don't patronize me. I didn't need voices, I just needed to familiarize myself with their accents. They asked me about my children and where they go to school, etc. I normally don't say that my children are adopted unless adoption comes up, but it seems that when I am around other Deaf people I feel like I must justify my signing skills with the fact that we have only had Rebecca for a year. I made myself promise that I would not bring this up this time - I wanted them to accept me for me and not the fact that I have adopted two children, one Deaf. After I say that my daughter is 10, I feel that everyone is saying in their head - "another hearing parent that can't sign as well as she should for having a 10 year old". Maybe this is all in my head and it probably is-I'm really self-conscious about my signing and want to do well. My friend speaks up about 2.5 hours into the visit that we have adopted Rebecca. From that moment on, I felt more accepted and they realized I am trying to learn the language and not a bad parent. They talked more 1 on 1 with me after that.

It was a great visit and I learned some new variations of signs. I didn't get home until 1am. It was a pretty exhausting day. I had my last day at my job that I had been with for almost 5 years. This was my dream job--but my life has changed with the girls and I need to be home more, so I am changing jobs. I am going to miss the people that I worked with considerably and it was a difficult decision for me. So, emotionally I was drained when I arrived at the group. The girls had a sleep over when I was at the group. Rebecca did not want me to go and her sister would be with her, so I felt like she would be fine alone. She was the only Deaf person at the sleep over and her Ushers does not make sleepovers any easier. I told her sister and the adults that were at the sleep over to let her sleep near the doors and light if possible so that she doesn't trip over people if she has to get up and go to the bathroom. She said that she had a great time and I was glad that she did it on her own. I guess you have to let go sometimes, even though it is hard.

I Can't See!

2008-09-11T07:25:00.004-05:00

Rebecca woke up saying that she can't see out of her left eye! I know that is not how Ushers works, so this really surprised me. We sent her to school and had her VI evaluate her. At 8:30am, I was calling to make her an opthamologist appointment. At 9am, I get a call from her school that she tested better on her vision than the last time - WHAT IS GOING ON??

At night, I talked to her more and she thinks it is just the way she slept last night. Her eye hurt and bothered her all day & then to top it off she got hit in the head with ball (not uncommon) and broke her glasses.

We are changing over her name with Medicaid which has taken us several days and is still not right. I made an opthamologist appointment for a later date and will have her checked out. Right now, we are just going to monitor her and see if it gets better.

Bible Drill / Choir

2008-09-08T07:18:00.003-05:00

My girls both want to do Bible Drill this year, which is wonderful but also comes with a series of concerns. We get to Bible Drill and I explain that I am going to be interpreting for Rebecca. She does wonderfully, she is very smart. She only read the verse 1 time and it was memorized. She already knows how to fully spell the first 5 books of the bible, including Leviticus and Deuteronomy. Anyway, I'm not terribly suprised by this but others were. Questions arose, how is she going to sign and hold her Bible at the same time? My answer, not sure how all of this is going to work - but I know that God will work all of that out for us.

I'm very excited about Bible Drill this year and proud that my girls asked to participate.

Rebecca also wants to be in Choir (with signs) this year. We are running into transportation problems with that so pray that works itself out. I know it would be a great thing for her and help her learn much more vocabulary very quickly just as Bible Drill is doing.

What Is RAD??

2008-08-30T14:51:00.006-05:00

Some have asked, "What is RAD?" Very hard to explain RAD (Reactive Attachment Disorder), but here's my attempt:

Imagine if you can...
You feel physical pain when loved. You feel so angry and hurt that you can't stand to be in your body. You live your life knowing that you are unlovable and can prove it. You have never felt love, guilt, empathy or need. You are wasting your childhoook believing that every adult is stupid and needs to be controlled. You have no favorite blanket, toy, pet, or person because they are always taken from you. You must always be in control to stay alive.

RAD occurs in children that were traumatized as a young child. Here's a brainscan of a child who was severely neglected as my children were. This is the best way to show you show RAD starts:

RAD is common in adoptive families as well as families that were seperated for a number of reasons (hospital visits when the child was young, etc).

Here's some symptoms of RAD:

superficially engaging & charming - they can charm the pants off anyone!
lack of eye contact when communicating
indiscriminately affectionate with strangers
not affectionate on parents’ terms - not cuddly, don't like to sit in our laps, hugs, etc.
destructive to self, others and material things
cruelty to animals
lying about the obvious (crazy lying)
stealing
no impulse controls (frequently acts hyperactive)
learning lags
lack of cause and effect thinking
lack of conscience
abnormal eating patterns
poor peer relationships
preoccupation with fire, blood and gore
persistent nonsense questions & chatter
inappropriately demanding & clingy
abnormal speech patterns
triangulation of adults (pitting mom against dad or therapists/teachers against parents)
presumptive entitlement issues

Each one of these are over the top. All children go though phases, but what you realize with RAD children is that these are too the extreme and do not end like a phase would.

The hardest thing with RAD has been building their self-esteem while fighting the RAD, because you give them a compliment you risk them feeling closer to you and then you will see and explosion and them pushing away from you. It is very difficult and exhausting raising RAD children because you have to be in control, but making them feel like they are in control. You have to be a confidence booster but aware of what may be coming. You have to plan constantly and allow them to know what is happening next, because they MUST know or they feel out of control.

Our RAD child is improving, but it's a S-L-O-W process. It has improved with us, but has not improved as much with other people such as teachers, grandparents, etc. We still encounter plenty of RAD moments, but it's not 24-hours now - maybe only 2-3 hrs a day.

What's In A Name??

2008-08-30T10:22:00.005-05:00

Choosing a new title for this blog has been very difficult for me, it's like naming a child. I am trying to encompass the many things about our family into the name. Here's a few of what I have came up with. Please vote to the right and let me know what you think.

HAND TO HAND - Eventually we will be communicating with Kimberly with our hands in her hands using tactile signing. We do this a little bit now after she is in bed, at the movies, etc. RAD is another thread that runs through our family and touching is very important and difficult for her. I also thought about how both of our children have moved from family to family to get here, thus going through several hands to reach our hands.

SENSE OF FAMILY - Obviously hearing and seeing are both senses that are lost in our family and also we are trying to give our children the sense of being a part of a family. Both children have to learn what that means to be part of a family.

THE BIGGER PICTURE - everything will need to be bigger for Rebecca, but also we are trying to instill in our children to look at the bigger picture of life. God is in control and there are other people who we are meant to serve. Life is not about me, me, me. Also think about our whole picture from birth to us, it's quite a portrait.

ADAPTATIONS - we are constantly struggling with the adaptations that come with Ushers as well as just helping our children deal with change in a better way. For my husband and myself, this whole journey has done a huge flip flop on our lives and we are adapting as well.

IT'S NOT THE END... - Adoption was not the end for us, only the beginning. Also, with each news that we are given we have to think, "okay, now what..." it's not the end, only a different beginning.

Other thoughts were... SEE the difference, Living the Big Life, RADical changes, Incredible Journey, What's Next?

Our family includes adoption, foster care, Ushers Sydrome, PTSD, RAD, ADHD, Bi-polar (mood disorder), constant struggle with change, CIs, hearing aids, eating disorders, etc. We are a Christian family and the holy spirit has guided us though each of our monumental decisions that have led us to here. We are on quite a journey and can't wait to see what is next for us.

If you have any other suggestions for the title of the blog let me know. I will keep the site http://ushersmom.blogspot.com , that part will not change.

Children Stories On Video

2008-08-22T22:08:00.001-05:00

I found this awesome video about a month ago and I have been meaning to share it. It's the only website I have found like this and my children absolutely love it. If you know of more sites like this, please share.

http://pbskids.org/lions/cornerstones/

Thank You PBS!!

Rebecca's Adopted!!

2008-08-19T19:57:00.003-05:00

Well...we have reached the finish line, or the starting line, however you want to look at it. Court was incredible. We got the certified interpreter (yippee!!) and she was great! We had the same judge that our other daughter was adopted with, so she got to see our family come full circle. The girls CASA worker was there even though she has been off their case for years. CPS and our private agency case worker was also there. Then there was the court reporter, the interpreter and the 4 of us. It was pretty full. The judge first took us to private quarters, but it was too crowded, so we moved to a courtroom upstairs. The CASA worker recorded the whole adoption for us, she kept the camera on Rebecca's back and the interpreter so that she can watch we can all watch it back later. We took several pictures of the girls and the judge on the bench and then a picture of all of us with the judge. The interpreter came up to me afterwards with tears in her eyes saying this was the best and most rewarding interpreting job she has had in 30 years and thanked me for making sure that they had her there. She said that she has interpreted babies being born and thought that was incredible, but our adoption experience blew that out of the water. I loved her and I am so grateful that I pushed for her. Thank you Ms. Washington! You were wonderful and an answer to my prayers.

After court the girls ran out of the courthouse screaming (they had been quiet for an hour), "OH YEAH!!!" Rebecca screamed, "I'm adopted" at the top of her lungs.

Then we headed to San Antonio for a weekend at Sea World and the River Walk. The evening of our adoption we took the girls to the Hemisphere Tower for dinner. They enjoyed the scenic views of San Antonio. We crashed right after dinner at our hotel and then got up early for breakfast and Sea World. Sea World was very accomodating and the girls had a fantastic time both days! The last day it was sprinkling, so we walked down the river walk a little bit, drove by the Alamo and then headed back home stopping in Austin along the way so the girls could see the capital building. It was still raining, so we did not get out.

Thank you everyone for your prayers, thoughts and advise this past year. I am thinking of names to change the blog to, I would love any suggestions or thoughts - I haven't thought of anything that sticks really. Our family is kind-of crazy, I want it to remain about adoption and children in foster care because that's the heart of our family. One of my daughters has RAD, PTSD, ADHD, mood disorder (bi-polar), etc. and then Rebecca has Ushers Syndrome. We have a challenging family and try to face each day with dignity and faith. Let me know your thoughts.

Thanks again!! SHE'S ADOPTED!!!

Court Decision

2008-08-11T20:13:00.002-05:00

Thanks to everyone for your support and great advice. I contacted the lawyer and explained to them again in great detail (thank you NAD) about Rebecca's rights and why I would feel better with a certified interpreter. I told them that I understand that finding an interpreter is difficult and I appreciate their efforts in finding someone to interpret for court, however I would like the best for my daughter as I am sure that they would want the same for theirs.

They mentioned that they didn't think that having a certified interpreter was crutial because Rebecca was not a sworn in witness to the case (I think those were the words that she used). I explained that it didn't matter if she was only in the audience, they would still need to provide an interpreter.

I told them that I wanted to expediate this adoption, Rebecca has waited long enough and I didn't to prolong it anymore. I want them to continue to look for a certified interperpreter, but if the CASA volunteer was all that they could find I would accept that so that we could complete the adoption. They later called back and said that they found a court level interperpreter and would know if she would be available on Friday tomorrow. Keep your fingers crossed.

I think I got the point across to the lawyer and the court. I think the next time that a Deaf individual comes into their courtroom they will know the law better and that person will not have to go through the hassle that I just when through.

When Is It Too Much?

2008-08-09T06:01:00.003-05:00

I found out more about the interpreter that will be present at our court hearing. He is a CASA volunteer. He is certified, but not up to a level 3. I had several conversations with our attorney about this and CPS. I have told them Rebecca's rights and what we expect. I almost lost our attorney because she is so frustrated with our case, partly me and partly my private agency. They don't know if they can find someone by the 15th who is level 3 (or higher) or court certified before the 15th or if that person can make it on the 15th. At several points, I felt like I was fighting a losing battle and that we were going to lose our attorney and/or lose our court date.

When does advocating become not worth it and should I just accept the CASA volunteer. He is probably very good, he has a full time job and his wife is a Deaf Ed teacher. He has been in the Deaf community for over 15 years. I started to feel like I was just pushing too hard and they were going to have to put off the court date for another month, which would be after school starts which is what we have been trying to avoid all summer. It would also be heartbreaking to Rebecca if we lost the court date. We have a countdown in our house and she is really looking forward to next Friday. How important is it that we have a "legally correct" interpreter?

Court Date

2008-08-05T20:07:00.001-05:00

We have our court date and they found an interpreter! Hallelujah! We will be traveling to East Texas on the 14th and will be in court on the 15th at 10am! We are so happy and excited. The girls can barely sleep tonight. Just 10 more days and she will be ours forever!

Legal Rights For Court

2008-08-02T08:50:00.002-05:00

I am about to confront, once again, the right for Rebecca to have an interpreter. Since, this appears to be a common thing (at least I find it to be) I will start blogging about how I fight this unjust and cruel world that we live in.

When I reminded Rebecca's attorney that Rebecca is Deaf and will need an interpreter, I got the same reaction that I seem to get a lot : "Can't you interpret?" I HATE THAT QUESTION!! I feel like if I say no, then they think, "How do you communicate with her then?" and if I say yes, then they are missing the point. I stopped answering yes or now and just advise them of her rights. Some people are persistant, but you have to be persistant back. Her attorney told me that sometimes I will have to be both the parent and the interpreter - like I didn't know this. I find myself in the interpreter role all the time, but not for court! I will not interpret for court!!! This is our families day and we all have the right to enjoy it together!!! URG!! Anyway, jumping down from my soapbox...here is what I will be sending the attorney and the court in East Texas to help me travel down this road...God help us!

State and Local Courts
To refer others to this page, please use:http://www.nad.org/statelocalcourts
People who are deaf or hard of hearing have a right to communicate effectively and to participate in proceedings and activities conducted by all state and local courts. Specifically, they are entitled to have courts provide and pay for auxiliary aids and services to enable them to understand and be understood. This right is based on a federal law, Title II of the Americans with Disabilities Act (ADA). 42 U.S.C. §§ 12131-12134. The U.S. Department of Justice has issued regulations explaining the requirements of the ADA. 28 C.F.R. Part 35, 56 Fed. Reg. 35694 (July 26, 1991) (U.S. Department of Justice Final Rule: Nondiscrimination on the Basis of Disability in State and Local Government Services).
The ADA protects all persons participating in court activities, including litigants, witnesses, jurors, spectators, and attorneys. It applies to any type of court proceeding in any type of state or local court, including civil, criminal, traffic, small claims, domestic relations, juvenile, and other specialized courts. It also applies to other activities conducted by court systems, such as personnel, educational activities, marriage ceremonies performed by court personnel or magistrates, and communication with clerks and other court personnel. This law also protects deaf or hard of hearing parents of minor children who are involved in court proceedings. Parents of a minor who is the subject of a juvenile proceeding are clearly “participants” in the proceeding even though the parents are not parties or witnesses. They are entitled to auxiliary aids and services, such as qualified interpreter services, during the proceeding. Furthermore, the ADA applies to “members of the public.” Therefore, deaf or hard of hearing spectators who are neither parties nor witnesses may request auxiliary aids and services, such as qualified interpreter services, from a court.
Under the ADA and its regulations, local and state courts are required to provide auxiliary aids and services to ensure effective communication with deaf and hard of hearing individuals in civil, as well as criminal, proceedings:
(a) A public entity shall take appropriate steps to ensure that communications with applicants, participants, and members of the public with disabilities are as effective as communications with others.
(b)(1) A public entity shall furnish appropriate auxiliary aids and services where necessary to afford an individual with a disability an equal opportunity to participate in, and enjoy the benefits of, a service, program, or activity conducted by a public entity.
(2) In determining what type of auxiliary aid and service is necessary, a public entity shall give primary consideration to the requests of the individual with disabilities.
28 C.F.R. § 35.160 (emphasis added).
The U.S. Department of Justice regulation defines the term “auxiliary aids and services” for deaf and hard of hearing individuals to include qualified interpreters, transcription services, captioning, videotext displays, written materials, assistive listening devices and systems, or other effective methods of making aurally delivered materials accessible. 28 C.F.R. § 35.104. For deaf or hard of hearing individuals who use sign language, the most effective auxiliary aid or service which a court can provide is usually the service of qualified sign language interpreters, trained in legal procedure and terminology. For deaf or hard of hearing individuals who do not use sign language and who have good levels of reading comprehension, the appropriate auxiliary aid or service is usually the use of a system that provides computer assisted real time transcription (also called real time captioning, communication access real time translation, or CART). Through this system, spoken words are converted into text using a stenotype machine, computer, and special software. The text appears on a computer monitor or other display, which can be read by the deaf or hard of hearing person. In its Analysis of the regulation, the Department of Justice uses “computer-assisted transcripts” as an example of an auxiliary aid or service that might be effective in a courtroom for a person who is deaf or hard of hearing who uses speech to communicate. 56 Fed. Reg. 35712. For some deaf or hard of hearing individuals who do not use sign language, an oral interpreter may be needed to facilitate lipreading. For individuals who use hearing aids or who have cochlear implants, the appropriate auxiliary aid might be amplified or modified sound equipment, a courtroom with appropriate acoustic properties, and/or assistive listening systems. The appropriate auxiliary aid or service depends on many factors. Any time it becomes apparent that a person cannot hear effectively in a courtroom, court officers should confer with that individual to determine the appropriate auxiliary aids or services necessary to communicate effectively with that individual.
Some state courts still have laws that permit state judges to assess the cost of auxiliary aids or services, such as qualified interpreter services, as “court costs.” These state laws violate the ADA. The ADA regulation states that the individual with a disability cannot be charged for the auxiliary aid or service provided by a state or local court:
A public entity may not place a surcharge on a particular individual with a disability . . . to cover the costs of measures, such as the provision of auxiliary aids or program accessibility, that are required to provide that individual . . . with the nondiscriminatory treatment required by the Act or this part.
28 C.F.R. § 35.130(f). In its Analysis to the ADA regulations, the Department of Justice explicitly addressed the issue of court costs:
The Department [of Justice] has already recognized that imposition of the cost of courtroom interpreter services is impermissible under section 504 [of the Rehabilitation Act of 1973.] . . . (45 Fed. Reg. 37630, June 3, 1980). Accordingly, recouping the costs of interpreter services by assessing them as part of court costs would also be prohibited.
56 Fed. Reg. 35705-06 (July 21, 1991). Therefore, states may not enforce laws which permit qualified sign language interpreter fees to be assessed as “costs.”
Courts are also required to make “reasonable modifications” in their policies, practices and procedures, when necessary to prevent discrimination on the basis of disability. For example, a court might be required to move a trial to a smaller courtroom with better acoustics to assist a participant who uses a hearing aid. A trial may need to be interrupted more frequently to permit a deaf criminal defendant to consult privately with his or her attorney, because the sign language communication will be visible to witnesses and opponents. Court personnel should develop a method of notifying a deaf or hard of hearing person that a case is being called, because that person may not hear a spoken announcement. Similarly, videos that introduce jurors or parties to court procedure should be captioned.
In conclusion, court systems are not accessible to deaf or hard of hearing individuals when they cannot understand or participate effectively in the proceedings. In recognition of this fact, the federal government has placed an obligation on state and local courts to modify their procedures and to provide auxiliary aids and services, such as qualified interpreter and computer assisted real time transcription services, at no cost to the deaf or hard of hearing individual.

We Just Signed Adoption Papers!

2008-07-31T18:53:00.002-05:00

Rebecca is now adoptively placed in our home and now we wait on our court date. I have requested an interpreter for court, we will see if I have to play the same song and dance again. It has been a long road for our little girl (who's not so little) and I'm so excited she's about to embark on a new journey and start her life!

Thank you everyone for your thoughts, prayers and great advise. I now have to decide what I want to do with this blog, do I continue with ushersmom and just change the title or am I finished? I think there are so many decisions that I have loved discussing with you guys, it would be hard for me to give it up. I never would have thought that over 5,000 people would be interested in our little story. It has allowed me to meet incredible people and not just live in our community by our communities advise.

Thank you again! The court date could be in as little as 2 weeks. If anyone knows an interpreter in East Texas, I would love to get their information.

Mainstream or Deaf Ed

2008-07-29T19:48:00.002-05:00

Why is it such an accomplishment for children to be mainstreamed, but when you tell someone that your child is in Deaf Ed is it looked at with pity? Why is there this push to mainstream?

Medicaid Pays For Interpreters

2008-07-24T19:47:00.002-05:00

That's what happened in our case. Since the state is legally the parent of Rebecca right now, I fought Medicaid and won! They are paying for an interpreter for her psych evaluation on Monday. I never thought about Medicaid providing the interpreter, so thank you Joyce for putting that bug in my ear. Now, we are one step closer to finishing up this adoption.

The funny thing about blogging is...

2008-07-20T14:59:00.002-05:00

One of the coolest things to me about blogging is all the cool people that you get to meet. We are all attached in a very unique way. I love reading other blogs and really feel connected to some of the people that I have met along the way. October will be one year since I started this blog and I only started reading blogs a little before that. On blog that really inspired me was Ashley's Mom and now it looks like I have inspired her (what a wierd twist).

She interviewed me for this really cool website called 5 minutes for special needs . It's a great website to link up with other parents who are going to some of the same things that we parents can only relate to.

My interview was posted today at http://www.5minutesforspecialneeds.com/91/91/ if you would like to take a moment to learn more about how we got in this mess :)

Who's To Advocate??

2008-07-15T07:16:00.002-05:00

Yesterday I just kept hitting walls. Do you ever have days like that? I called Rebecca's CPS caseworker back to set up the date for us to finalize the papers at the end of the month. She informed me that we need to get a psychiatric evaluation done on Rebecca before we can sign papers. We are only 2 weeks away from signing papers!! Okay, so I called the doctor who did my other daughters evaluation and has seen all the kids in our agency, so I know that he has seen Rebecca at some point and left a message for him to call me back. In the message I reminded him that Rebecca is Deaf and we will need an interpreter for her. I tell him that if he needs help finding an interpreter I have no problem helping with that, I do realize it is short notice but CPS is requiring this prior to the adoption at the end of the month.

I get a call back from our agency's caseworker asking why do we need an interpreter if she has a cochlear implant?

After I calmed myself down, I talked to CPS directly and our caseworker about this. Why wouldn't you give her everything that she needs so that she can understand as much as she can? I compared it for them to a child in a wheelchair that you are asking to go across the room. Sure, that child will eventually get across the room without her wheelchair, but whey wouldn't you give give the child the wheelchair in the 1st place??

The agency told me that they were going to try to get the psych deferred. My question back to them was, "Are you getting it deferred because you don't want to deal with my Deaf child and the interpreter or are you wanting it deferred because she is doing well in our home and there is no reason for an evaluation?" She didn't answer me.

What I guess frustrates me the most about this is that our agency is supposed to be advocating for Rebecca - how were they doing that??? Is throwing her in a room without an interpreter and thinking that is okay when the outcome of that evaluation depends on if she gets adopted advocating for your children???

Let me say this as plain as I can - MY CHILD WITH A COCHEAR IMPLANT IS NOT A HEARING CHILD!!!

6th & Final Day At SEE Conference

2008-07-12T16:09:00.002-05:00

Yesterday was a sad day. The conference has ended and now I am out on my own again. On our breaks and at lunch I had lunch with 2 ladies who will/and will be interpreting for my daughter at her school. They are both ASL interpreters and I learned so much from them. There are things with SEE that drive me batty and do no make sense to me. That's why in our house we are not pure SEE, we mix things up a bit. Compound words in SEE make me insane. Some of the compound words like SomeTimes are just one sign even though in SEE you would pointless as 2 signs : point and then less. Seems to me that sometimes should be the same : some and then times, but it's not sometimes has the same ASL sign as sometimes and is not broken down. There are many examples of this and it makes it really confusing to me to know which one is correct. When in doubt if I know the ASL sign I use the ASL sign in our house. The next time I get a chance I look it up and sometimes :) it is the ASL sign, but others it follows the compound word rule. I then tell my daughter the next time I use that word that she may also see "word + word" for that. I hope that made sense. It's really difficult to describe a language in type.

We did great on our Footloose song. I survived!! It is a really fast song when you are signing every word and every suffix. Get me off of my knees. For example : Get is got with a past tense marker and knees has an s at the end. C'mon C'mon let's go...let's is with an apostrophe s so it is an "s" that is turned in and then go. My hands and wrists got a good workout.

I'm sad that the convention is over. I learned about 200 new signs in a week. Where else can I do that? If you would liek to know if there is a SEE convention in your neighborhood visit http://www.seecenter.org/skil_shp.htm

As a side note, I think that as a parent of a Deaf child you cannot just have 1 language that you are teaching your children. There are many signing systems and I want to expose myself and my child to as much as I can. SEE and ASL are the two prominate signing methods in our area. We also see signed engish, CASE and occasionally Rochester method. I would like to be profecient and learn as much as I can about sign language, NOT just SEE, NOT just ASL - but any and all sign language.

The reason I took the week off of work and went to the SEE conference is because it is what is being taught at my daughters school. If ASL were being taught I would have attended an ASL conference. Please do not bash me for wanting to better my skills in any language. We need to be flexible and understand that in this world my daughter is not just going to encounter ASL or just SEE - I do not want her to be ignorant or think that only 1 way is the right way! My goal is for us to be able to communicate with each other and with others. If that means that I need to learn 4 or 5 methods - I'm willing to do that. Right now, I feel like it is most important to give her language so that she can be caught up with her classmates. How can we do that quickly???? I think the answer is by signing what they are signing to her at school and that means that I learn SEE and sign as much SEE at home as I can so that she understands what is being signed to her at school.

Do not judge me because I sign SEE. I also know some ASL and will learn more and more as time goes on, but for now SEE is what we are using with some ASL flavors thrown in. SEE is not always conceptual and ASL sometimes clarifies what I mean. ASL is a beautiful language and I know that one day I will also sign ASL. I will not keep Rebecca from ASL, it is definately something that she needs, but SEE serves a great purpose as well.

5th Day At SEE Conference

2008-07-10T22:36:00.003-05:00

Today we spent over 1/2 the day (until around 2:00) without any voices. We had to order lunch and everything without voices. I went with 2 interpreters and they choose a place that did not have combo numbers. We went to Taco Cabana. We found a catering menu and they used that to help them order, but for some reason quesadillas (Rebecca calls them chees triangles) was not on that menu. I had to say 4th picture on the top and the guy was not getting it. It was difficult. I finally got what I wanted and we sat down to lunch. Both of the interpreters are originally ASL interpreters so this was a great opportunity for me to learn some ASL differences. It was fabulous! I'm still not going to switch to ASL right now, but it was great to see it more. I had them tell me a story in ASL and then in SEE so that I could visually see the difference.

Tonight was the banquet and that was fabulous! Rebecca's batteries died when she got to the hotel and I normally have extra batteries in my purse, but I have not been carrying my purse to the conference so I had no batteries. It was absolutely fine and as I have said before I think that she pays more attention without her implant. Everyone was signing there so it was easy for her to communicate and I really appreciated not having to interpret for everyone because everyone there could sign at some level.

We won a poster that has the pledge of allegiance on it which is great because that is something that Rebecca needs to improve on. I also got another suffix/affix book. I gave this one to Rebecca because she absolutely loves mine. She likes looking through it to see human turn into humans, humane, inhumane, superhuman, etc.

Tomorrow is the last day :(

4th Day At SEE Conference

2008-07-09T20:06:00.003-05:00

Okay, today I have a headache. My head hurts from all the things that we packed in today. We have 3 instructors for our level which is awesome because we get to see how each one signs differently. I'm finding it extremely useful just seeing the other peoples hands when they sign and seeing their "accents". I am so used to seeing the same ol' people sign to me and it is great to see new hands! It has been very beneficial to me. I try to watch vlogs every once in a while just to see other people sign. It's amazing to me how a sign can look entirely different on someone elses hands. But, I guess we also have several accents as hearing people. If I go to Boston, I do not understand what they are saying for a little bit. It's the same with signing. Today we worked a lot on prefixes and suffixes. This is an area I am weak in because I normally one sign the suffix if it is an -ing or an -s and only if I did not already repeat the sign because it was plural (which is not TRUE SEE and I know that).

Today I had lunch with Rebecca's teacher and one of my interpreter friends who is one of the interpreters at our church. These people are very near and dear to me and I am very greatful that God has put these people in my families lives. I could not be more blessed. They are great Christian women who are wonderful with children, but also don't "pity" their deaf children. I love that because that is one of my pet peeves since having my children. Don't pity my children because they were in foster care or because one is Deaf - you can understand it without pitying them. Does that make sense? They do have different needs and you can provide for those needs without pitying them. Make them rise to the occasion and that is what these 2 wonderful women do with their children and I appreciate it so much!

I don't think that I announced this since school has been out, but when school got out Rebecca was tested to be reading 2nd grade level books! This was huge because when Rebecca was placed with us she was still on a pre-k level. I'm really excited about how much she is improving!

Tomorrow night is the banquet, so I may not get around to blogging but I will write about it when I get a chance. Good night!

3rd Day At SEE Conference

2008-07-09T06:24:00.003-05:00

Great day! Don't get me wrong, my head is still exploding from all the knowledge but I'm enjoying it. I had lunch with 2 of Rebecca's interpreters from the past and that was great! We got the words to the song that we will preform on Thursday night - Footloose. That's a fast song. Anyway, hopefully I will have more to say about day 4. See ya then!

2nd Day At SEE Conference

2008-07-07T21:07:00.002-05:00

Okay, so I decided to go back for more. Today was definately a full day of mind-blowing signing. I actually did the best at fingerspelling which I feel is my weakest area so if that is giving you a clue as to how the rest of my day went. I learned today that a lot of the people that are in my class are actually ASL signers who are learning SEE. What I learned from them was that a lot of my signs are ASL which is fine because SEE is based on ASL so it fits in there somewhere. I am so grateful to be in this class because when I sign something that is not the correct SEE sign, someone tells me, "That's okay in ASL" and I feel better. I am not totally clueless, but I am really messed up in my SEE signing.

I have shared my story a lot with the people who have asked and that has made several other people come up to me and ask. I actually learned that Rebecca's VI assistant (I had only met the VI intructor herself) is taking the SEE classes so that he can communicate with Rebecca better and not have to have an interpreter follow him around. I think that is just awesome of him! There are such incredible people at this conference, I feel honored to be there.

We also got our song that we will perform on Thursday night (start praying now). It will be Footloose! Do you know how fast that song is? Okay, just checking...continue praying for us. I will be back for another day of torture ;) tomorrow.

1st Day At SEE Conference

2008-07-06T22:55:00.003-05:00

Tonight was the first night of the SEE conference and then tomorrow it is early in the morning and all day long. Tonight we were evaluated to see what class we would be assigned. I filled out the sheet that asks why are you hear "mother of Deaf child" and how long have you been signing "since Octoberish". I hand the paper to the lady and she asks how old my daughter is and I start signing back to her that she is 10, we are adopting her etc. She looks down at the paper and then back at me and says - you've only been signing since October. I reply yes and she tells me to stand over there and they will get back with me on what class I should be in. Technically, since I have only been signing for less than a year I should be in a beginners class, but she says I do not belong in a beginners class. So, I am put in a classroom with 32 other people and we are evaluated further. The first assignment we are broken up into groups of 3 and asked to tell out ourselves. The first person goes and she's an interpreter - ok....the second person goes and she's an interpreter - feeling nervous. It is my turn and I'm only a mother - no interpreter. We are then broken up into groups of 11 and are told again to tell our story. Interpreter, interpreter, interpreter, speech pathologist, interpreter, itenerant, interpreter...etc. Once again, me just mom!

Am I in the right class??? My signing in my opinion is not that great. It's okay and I have continued working on it for 7 months but it is definately not at an interpreters level. They give us a large workbook and most of it is about interpreting in the classroom and interpreters responsibilies, etc. OH MY GOSH - I am so overwhelmed! The people teaching these classes are linguist with PHDs and masters in this and in that! Again, I am just a mom. I am only taking these classes so that I can better help my child with her homework and building her language skills.

Anyway, I will try to post again tomorrow on how day 2 goes if my head has not exploded!

Crazy Summer Days

2008-07-03T07:38:00.003-05:00

Hard to believe it has been a month since I have written anything on here. Where did the time go? We have been so busy -- Rebecca got her hearing aid and loves it! She shows it off all of the time.

We are still working on the adoption which is now in full swing, we will sign papers at the end of this month and then consumate in August. We have received all of her records from FPS and are going through them now. We are working on our subsidy papers and filling out the paperwork for our attorney.

Next week, I will be attending the SEE conference in Dallas. I have also been having private tutoring from one of my Deaf friends who is working with me on my signing in the Deaf community. It has been difficult because for Rebecca I need to use SEE because her school uses SEE and so it is necessary that for now she learns SEE. I also recognize that SEE is not the most popular in the Deaf community, so my friend is helping me with that. So, I am learning 2 ways to sign right now and my head has been spinning.

Summertime is in full swing at our home and we are bustling with activity. Camp is coming up at the end of this month, but they still have not found an interpreter for Rebecca - so please pray for that! It is a foster/adoptive camp which is incredible and I know that Rebecca would get a lot out of it! We are planning our annual trip to Sea World and right now we are overwhelmed with 4th of July activities. Both girls went to VBS last week and had a blast! They are in a summer program that is filling them with activities - so far they have went to a baseball game, skating, had a cooking class and next week they will go bowling.

So, if my blogs are a little sparatic I appologize. I will do my best to try to slow down and write something every once in a while.

Too Bad, So Sad

2008-06-06T07:24:00.003-05:00

Today we were at the dentist and Rebecca signed, "Sad, Too Bad". I took me a few seconds, but she was trying to say, "too bad, so sad". I corrected her and laughed all day about it. If my hearing daughter had told me, "Too Bad, so sad Mom" I may have been offended, but it was music to my ears coming from Rebecca. She is 10, so this is a saying that should probably be a part of her language at this age and I am so proud of her!

New Found Independence

2008-06-01T19:38:00.002-05:00

We got our Video Phone installed. Prior to the video phone I was interpreting with the phone on speaker and then revoicing for Rebecca if the other party did not understand her. Rebecca is 10, I know that soon she will not want me to hear every conversation that she has and she shouldn't have to rely on me to be around to make a phone call. Since we have had the video phone she has made 5 or 6 phone calls. She has loved it!

We are hoping that it will also help improve her sign language since everytime it is a different person with different "accents". The interpreters have been awesome with her, they sign slower for her and normally make some small talk. When I get on, they sign really fast and I'm no where near that pace. I guess since they think that I have a 10 year old Deaf child, I should be a signing pro. It's embarrassing for me. I only got on a Relay call 1 time in the middle of a conversation that Rebecca was having. I look forward to communicating with my Deaf friends with it and talk to Rebecca's friends parents to arrange play dates.

We are still collecting phone numbers right now, but I look forward to the days when there are more calls without the relay operator than with the relay operator.

Deaf Children In Foster Care

2008-05-25T20:13:00.002-05:00

This has been heavy on my heart & I hope it opens some eyes. We adopted a hearing child last summer and we are working on adopting our second child who is her Deaf sibling. The largest difference between these two children was with the caseworkers. After many years in foster care, Rebecca got her 1st caseworker who knew a little bit of sign with us. This broke my heart, not because of Rebecca but because of all of the other children in foster care. We have 2 caseworkers, our agency caseworker (who could sign a little) and then a CPS caseworker who knew no sign. We interpreted the conversations between the caseworkers and Rebecca.

This bothered me because we know that there are faults in our foster care system, that is one of the reasons we became foster parents. I was tired of complaining about it and not doing anything about it, so we became foster parents to try to change the lives of some of the children in the system. Many foster care children are being abused and that is why we have monthly visits from the caseworkers. They ask questions, like "how do you like living here" and "how do your parents act when you are in trouble" or "have your parents spanked you"? I'm fine with all of those questions and I'm glad that they ask those questions of my children. When we got Rebecca, those questions were dwindled down to "how do you like living here" and "are you happy here" which again, I am fine with but it got me thinking, "how would children answer that question honestly if there was abuse going on in the home?" Would they say to their parents interpreting, "Last night he came in my room and touched me??" NO! How are the Deaf children supposed to speak out for themselves when the parents are the interpreters and always have to be present??

I don't know how to make these changes, but I think that an interpreter needs to be provided or the caseworkers need to take an sign language class if they are assigned to a Deaf child. Something needs to be done. It breaks my heart to think that these children don't have the same opportunity to speak out for themselves as hearing children do.

2008-05-20T21:35:00.005-05:00

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

2008-05-08T19:35:00.004-05:00

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

2008-05-01T07:27:00.002-05:00

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?

2008-04-28T19:13:00.002-05:00

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

2008-04-22T20:41:00.003-05:00

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

2008-04-15T19:34:00.003-05:00

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

2008-04-10T21:01:00.003-05:00

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

2008-03-30T21:24:00.002-05:00

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????

2008-03-26T21:01:00.004-05:00

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

2008-03-24T06:09:00.005-05:00

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

2008-03-23T16:45:00.003-05:00

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!!

2008-03-18T23:24:00.005-05:00

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

2008-03-17T18:49:00.003-05:00

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

2008-03-05T20:25:00.002-06:00

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?

2008-02-22T19:59:00.002-06:00

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!

2008-02-20T21:17:00.003-06:00

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

2008-02-17T23:00:00.004-06:00

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

2008-02-16T09:25:00.004-06:00

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

2008-02-14T23:18:00.004-06:00

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!

2008-02-09T17:02:00.000-06:00

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!

Moving Onto The Vision Stage...

2008-02-06T12:09:00.000-06:00

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, $40...giving your child independence....priceless!

Cute Times In Recent Days

2008-02-03T12:55:00.000-06:00

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!!

Ushers & Blue Film????

2008-02-02T09:14:00.000-06:00

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.

Disposable Kids???

2008-01-29T14:46:00.000-06:00

I've heard about this adoptive parent who decided to give up on her deaf child. For those of you who didn't hear about this, I will recap. There was a family who had a deaf child for more than one year, she had friends at school and was starting to communicate using ASL. They tried to get the child a cochlear implant but found out she was not a candidate for hearing aids or implants. The family thought that the child would learn to hear and speak. The mom got pregnant and decided it was too hard on their family to continue working with this child and the child went back to the agency.

I will try to get through this without being judgemental which will be hard for me on this one. I am a foster and adoptive parent so I guess I have something in common with this mother, but that is about as far as the similarities go. Foster children already have a difficult time since they have already loss their biological parents and it is difficult for me to comprehend putting a child through another tragedy.

I do not know how old this child is, but we can say that she is over 1 year old and since she was in school we can say that she was over 4 years old. I almost don't want to publish this statistic but I will because this story is all too common. When you commit to being a foster parent, you are committing to the child that you receive. Here are the national statistics for a disruptive placements :

Less than 1% of infant adoptions disrupt.
10% to 12% of adoptions of children aged three and older disrupt.
Of children placed for adoption at ages 6 to 12, the disruption rate is 9.7%.
Of children placed for adoption at ages 12 to 18, the disruption rate is 13.5%.
Of children of any age with special needs placed for adoption, the disruption rate is 14.3%.

Over 100,000 children in the US are waiting to be adopted. Most children wait on average of 4 years before they are adopted. Over 35,000 children "age-out" of the system each year. Out of these children, 70 % will be homeless, 88% will be incarcerated at one point, 40% are on welfare, 40% do not graduate high school and 40% of the girls have a baby within 2 years.

I am not sure of the statistics of when a child become difficult to find an adoptive parent. But in 2004 when we started our journey, it was age 5. That is why we made our criteria for fostering children start at age 5. We wanted a child that may not otherwise be adopted. It makes me nauseous to think about leaving a child out there that I knew that I could help.

There just is simply no substitute for the unconditional support, guidance and love that families can provide adoptable children. There is no reason for those stats to be a part of our society!!

We have had children come in and out of our home, but it has never been our decision for any of our children to leave & I am proud to say that! We have been through mental institutions, RAD, ADD, PTSD & now Ushers Syndrome with our kids. I cannot fathom turning any of these kids away because of their circumstances. Under each one of these things lies a child-a loving & caring child. It may take you years to uncover that child, but how can you say that child is not worth years of your effort.

How will this mom be able to look at her biological child when he/she is born and say "I traded a child for you"?

I also know that it is difficult with a special needs child and it requires a ton of your time, but again how can you say that it is not worth it. Most of these children have been through hell already, more than what most people will experience & you can't get off your cushy behind to assist this child that you committed to. Sorry - now I'm being judgemental, I told you it would be hard for me.

Now, the compassionate side of me says that you do need to do what is best for your family and if that did not include what is best for this child then maybe it is better that it did not go on any further. I pray for this family and the choice that they made. I pray for this child that she can forgive, find a good forever home who can accept her for who she is - a beautiful child of God with unique abilities to change her world.

Sign Word Challenge

2008-01-27T20:50:00.000-06:00

When I knew that I was going to adopt a deaf child we instantly started learning sign language. After we learned the basics (numbers, letters & colors), I didn't really knew where to start with everything else. I made a committment to learn at least 50 words a month - now I have learned over 300 words. Some of the words that I learned were intentional words that I sought out and others I just came across and they stuck in my mind. I thought I would share some of the words that I started with in hopes that it would encourage others to always seek more vocabulary.

Email, comfortable, amoung, less, ravioli, clumsy, doubt, office, witch, too bad, cool, birthday, light, dream, full, rude, yell, chapter, verse, Target, college, show, stare, bother, fruit, pumpkin, pecan, match, bless, yogart, granola, library, folk, mean, tantrum, fair, caseworker, echo, soldier, answer, bank, begin, bell, Bible, boring, closet, Santa, Christmas, headache, Israel, Superman, life, jelly, radio, cell phone, football, gas, audiologist, astronaut, biscuit, garden, grocery, lamp, chore, honest, lie, Spanish

I have no idea how many words I have really learned because sometimes I don't have my list with me and I try to remember later but I know I didn' t write them all down. What helped me the most was with each conversation that I have, I try to picture it being signed in my head. The words that I don' t know I look up later. I also read the girls books and study them ahead of time so that I can sign them to Rebecca and Jasmine. This has helped me reach outside of my everyday vocabulary and learn even more words.

You don't have to learn 300 words in one day, just take it one word at a time and you will get there. You will find that within your family you use the same words over and over again and those words will become easy for you to remember.

I challenge you to learn 50 new words a month if you are just starting to learn sign language & 20 new words if you are experienced. I would love to hear your progress!!

Glimpse of the Future? I hope so!

2008-01-24T20:48:00.000-06:00

I know this is everywhere on the internet right now, but it is such awesome news I can't help but say something about it!!

http://www.pepsiusa.com/bobshouse/

That is a link to the Pepsi commercial that will air on the Superbowl. I normally do not watch football, but this is making me want to watch!! I hope this is the beginning of a trend. In an age where we have diverse cultures running for president and a Superbowl commercial that includes ASL - I am inspired about our future. What would happen if the two combined in we had a Deaf president? I guess I should slow down and be grateful for the present.

Then there is the opposite that is still going on in the world : see http://abclocal.go.com/wls/story?section=news/local&id=5912924 . The good news is that this is getting publicity so maybe more companies will review their policies and there will be less of this going on. Karen, my prayers and thoughts are with you & I have stopped going to Steak'n'Shake! Good for you for speaking out!

You can keep up with the Steak'n'Shake story on Karen's blog mentioned on the news at http://putzworld.blogspot.com/

Presidential Candidates

2008-01-23T22:34:00.000-06:00

I found this link and just wanted to share how the presidential candidates feel about American's with disabilities :
http://www.aapd.com/News/election/peac2008.php

and here is a list of the debates with closed captioning in case you want to catch up:
http://www.taudiobook.com/catalog/index.php?main_page=page&id=20

Is Deafness A Cultural Nationality?

2008-01-22T23:04:00.000-06:00

You will notice this blog is named, "I'm adopting a Deaf child..." NOT a child with a CI or a hearing child or a Deaf child with a CI - I have a Deaf child. Why is that looked down upon or looked at with pity?

As parents of Deaf chilren we face incredibly difficult decisions - one of the many things that I wrestle with is how my decisions are going to mold her. If she is a Deaf child, isn't she part of the deaf community? How do children who are not given sign language fit into the community? How can parents choose this for their children?

Is Deafness a cultural nationality? Is it right for parents to robb their children of their culture? If your child was of a different nationality, would you teach your child that culture and that language? Why is deafness different? because it is a viewed as a disability? I know Deaf people who are more abled then most hearing people. They travel the country and inspire me in ways that I cannot explain. Sign language is a beautiful language and I do not understand why anyone (deaf or hearing) would shy away from this language or culture.

Just step into this culture for a moment - allow yourself to be submersed into what it could be like before you choose for your child. I thank God that he gave me Rebecca so that I could experience this culture and language for myself.

Opthamologist Continued

2008-01-21T17:02:00.000-06:00

So, we went back to the opthamologist today to see if bifocles woudl help. I also asked them about the perpherial range test. Rebecca did not like the bifocles at all, so that is out.

As far as the range test goes, she said that it would be very difficult since she is Deaf and the test involved hearing and pushing a button. I said that I know that there is perpherial loss, I just wanted to know how much. She said there would be no way of telling. I then said that they school is requesting it - hoping that would get her moving. She finally got up and had Rebecca cover one eye and then put some fingers out the side and asked if she could tell her how many fingers. Rebecca got everyone of them wrong.

So, all that was put down was that she has profound perpherial loss. Well - duh!! Sorry, I guess I was just hoping for more like a number of loss so that we would know if it was getting better or worse as time progressed.

Everytime I leave one of these appointments I feel like I have been beaten over the head. Do you feel like that? Do you feel like you are pulling teeth to get them to answer questions or do additional tests? I did not think that I was being unreasonable asking for the test and I thought it would be helpful especially since they did not locate the RP. Why does it have to be so difficult? I take my hearing child to the doctor and I do not have all this trouble - we have even taking her to specialist and did not have this kind of trouble. I do not understand, shouldn't you be more caring & willing to get more information for a child who you know needs it.

Next time we are going to a different opthamologist. Am I being ridiculous or is this as good as it gets?

Silly String Fixes Anything

2008-01-20T16:32:00.000-06:00

We have had a long week here at our house. Adjustments have finally hit home, Rebecca has been very emotional and Jasmine has realized this is not so easy. Everyone kind of hit their wall this week and we are all exhausted. We had doctor appointments which are always stressful to the kids and my husband and I had training so were out part of the week which disrupted the kids schedule.

To break the ice, today we had a silly string fight in our backyard. This requires absolutely no verbal skills and allows everyone to just cut loose. We are all ready to start next week.

I don't know who came up with string in a can, but it is ingenious! The last time we did silly string as a family was when Rebecca was just starting her visitations - everyone was very tense & it really helped. We were not very good at our sign language and this allowed us to have fun as a family without worrying about the language barrier.

The next time you are at the store, pick up some silly string and when things get tough - get the silly string : you will see what I mean. Everyone can just relax and the laughter is contagious.

Immediate Response Needed!!

2008-01-18T21:37:00.000-06:00

I am so excited about this and I hope my excitement is contagious!! Please show your support for the Deaf/Blind Relay service!

Your comments should be addressed to the FCC and needs to include your mailing address. All comments need to be posted before February 4, 2008. They will then have 90 days to make their decision. You can post your comments on-line on the FCC Web site through:
“http://fjallfoss.fcc.gov/prod/ecfs/upload_v2.cgi“http://fjallfoss.fcc.gov/prod/ecfs/upload_v2.cgi

The proceeding code number is 03-123.

Check out this service at Hawk Relay’s Website : http://www.hawkrelay.com
The video is really great and shows how this service would work.

This service would open so many doors and opportunities for deaf/blind people everywhere. Even if you are not deaf/blind, check out this service and try to put yourself in their situation. You can make thing better for the deaf/blind community and for my little girl.

Please take a moment and do this!

Opthamologist Update

2008-01-18T06:51:00.000-06:00

I tried again the morning of the appointment to call the opthamologist and there was no answer - great! Okay, we are going to the appointment not knowing if an interpreter will be there or not. Rebecca is not in school & I did not go to work. We walk in and I go up to the counter, both ladies are on the phone - one tell me when she gets a minute that the phones have been down all morning. Ok, we wait. When one finally gets off the phone, I tell her who we are and ask if there is going to be an interpreter present. She looked at me like I was 1/2 crazy - she said that she remembers taking my calls and asked if the office manager ever got back to me. I said no, she said, "as far as I know, there will be no interpreter". She asks around, it's confirmed - no interpreter!

I had decided earlier that day that if there was no interpreter I would go ahead with the appointment since Rebecca and I were home and I didn't want to waste the day, but I would make it a tremendous learning experience for them. I explained to the lady the liability of not having an interpreter and she didn't really seem to care. I fill out my paperwork and turn it back in to the other receptionist who I then explain again the liability of them not having an interpreter. Again, no response other then "sorry".

We go back to the waiting room and they come out to dialate Rebecca's eyes. I do not know the sign for dialate & it is not in my book. They start to move towards her to put the drops in her eyes and I say "NO - I need to explain to her what is about to happen. You are going to have to be very patient today since there was no interpreter provided, I am going to do the best that I can". I tell Rebecca they are going to put 4 different drops in her eyes, this will D-I-A-L-A-T-E her eyes. Things will be blurry and bright. It may be hard for her to see after they do it & all of that is normal. This will help them to see her eyes better.

Next we go to another room with a different person. Again I tell the lady (who I actually went to school with - wierd) that no interpreter was provided as legally required and I am going to have to do my best. She is just going to have to be patient. The lady says for Rebecca to read the letters on the chart when looking through the thing in front of her. Well, when she is looking through the thing - she is not looking at me, so this gets tricky. The girl keeps going back and forth. Tell me which one is better, now read them to me, now tell me which one is better, etc. We fingerspelled the letters instead of doing what the suggested which was have her write it. It worked much better.

Now Rebecca's sight is getting worse because of the dialation - she cannot see me up close. They do the pressure test on one eye and Rebecca starts to cry - they say that they do not have to do the other eye. We go into the next room where the doctor looks closer at her eye. Again, I explain Rebecca is Deaf and her office did not provide the interpreter that is legally required. She just says, we'll do the best that we can.

They said that they could find no evidence of the RP, however she definately has the night vision loss. I already knew that she could not see in the dark and it's a good thing that the RP has not revealed itself yet. She wants Rebecca to come back next Monday to see if she could benefit from bifocals.

I also thought after the appointment, I do not think that they did the perpherial field loss test. I'm going to have to ask them about that on Monday as well.

Some Success

2008-01-15T21:18:00.000-06:00

I have been working on several things for Rebecca lately. She had a pulminary appointment, and opthamologist appointment & I have still been working on getting her an interpreter for her after-school program.

I found out that Children's in Dallas accepts Medicaid, I called them and got Rebecca's pulminary appointment changed to February and they gave me no grief about having an interpreter at the appointment. God Bless Children's!! Thank you for just saying, "Let me see when and interpreter will be available with our schedule". I was on hold for about 10 minutes, but they came back with a date and a time that is only a few weeks away. Thank you for not making me fight for a right!! I quickly dumped the other pulminary specialist after educating them!! Dood riddance!

Our opthamologist appointment is tomorrow and they never called me back to confirm that an interpreter will or will not be there. If I get there and there is not an interpreter I don't know what I am going to do.

I talked to the director of Special Ed for the city that Rebecca goes to school at and finally got somewhere!! Rebecca will have an interpreter during the curriculum time of her after school program. They are hiring someone specifically for Rebecca! I am so proud!! GO REBECCA!! Maybe now more deaf children will join the program & there will be someone there to assist them!

Interesting Results From Dallas

2008-01-15T06:34:00.000-06:00

Motor Development of Deaf Children With and Without Cochlear Implants
from the Journal of Deaf Studies and Deaf Education
The purpose of this study was to investigate the impact of a cochlear implant (CI) on the motor development of deaf children. The study involved 36 mainstreamed deaf children (15 boys, 21 girls; 4- to 12-years old) without any developmental problems. Of these children, 20 had been implanted. Forty-three hearing children constituted a comparison group. Motor development was assessed by three standardized tests: the Movement Assessment Battery for Children, the Körperkoordinationstest für Kinder, and the One-leg standing test. Results showed that the hearing children performed on average significantly better than the deaf children (whether or not using a CI). Regarding the use of a CI, there was only a significant difference on one subtest between both groups, although there was a nonsignificant trend for the deaf +CI group to score somewhat worse on average than the deaf –CI group. This led to some significant differences between the hearing group and the deaf +CI group on measures requiring balance that did not hold for the hearing/deaf –CI comparison. Although this study could demonstrate neither a positive nor a negative impact of CI on balance and motor skills, the data raise the need for further, preferably longitudinal, research.
January 14, 2008
This article just left me with just one questions - "Then why are we implanting?"

Better With Or Without a CI?

2008-01-13T18:56:00.001-06:00

I want to start this by saying I received Rebecca into my home with a CI and we have to provide her with her CI everyday because it is a "medically necessary device".

I have found some very peculiar things when Rebecca has not worn her CI. The only times that she has been without her CI have been when she first wakes up, before her hair is dry, if she is engaging in a physical activity (like jump roping), it is an extremely loud environment or one day we went to Six Flags and she did not want to put it on just to take it off 10 minutes later again.

When she is not wearing her CI, she is more in tune with what is happening around her - she pays much better attention to the family and we find ourselves repeating ourselves less. The CI definately has it's advantages though like getting her attention when she is walking off, etc.

I could definately see Rebecca doing better in school and in life without her CI. It will continue to be her choice and she will never know that I think this - but I do. I think that she uses her CI to control her hearing. When she wants to hear - it's on and her attention is 1/2 way on. When she doesn't want to hear with her CI, she turns it off intentionally - tells the school it's broken to get out of class, says her batteries are dead, etc. The only times that we have her full attention is when her CI is off and she is totally reliant on the signs that we are giving her.

It bothers me that it is another avenue for her to control her situations instead of deal with them. I guess if she didn't have the CI, she would put her head down or look away so I don't know why it bothers me so much but it does.

This is definately not true for all parents and I know that. Rebecca was not implated until she was around 5 years old. She also has a past that she has to overcome and is also losing her vision. There's a lot going on with her and I know this could give different results. Besides that, all children are different and each parent has to decide what is best for their child. I'm sure at the time, CI was the best choice for her - I'm just not sure that it still is.

Rebecca teeters between the hearing world and the deaf world as I know many people do. Some days, she does not want to sign at all and only wants to voice and will repeat herself 4 or 5 times before signing it. Today, she did not want to sign the words to the songs at church. Other times she will put our hands down and tell us to stop signing. Some times she wants me to interpret and help and others she does not want me at all. This is most frustrating to me when I have worked on what I am going to need to interpret for her for a week and then she doesn't want me signing at all.

Anyway, I'm just ranting now. I think I would be one of those parents who would be extremely proud if she decided one day to put her CI away and live as the deaf person that she is.

Blessed With Heathly Children?

2008-01-12T18:49:00.000-06:00

Have you ever heard this? I started thinking more about this statement last week. Is it really a blessing to have "healthy" children? I believe my life has been more blessed and neither of my children would be considered completely healthy by anyone who knows us.

What are heathly children? Most people would consider a healthy child to be someone without any medical issue - all body parts, can see, hear and no neurological or mental problems. Is that what you think a healthy child is? Is having a healthy child a blessing?

I feel honored that God chose me for my children. Neither one of them would be considered normal by the defination above. I may step on some toes here, but I'm going to say it anyway-I think that the parents of the children who need extra care and may not be considered healthy according to the defination above - are the ones who are blessed!

If you want to experience a true blessing, work with one of these children! It will change your life. You can do respite, be a teacher, and interpreter, a foster/adoptive parent, work in a daycare or just babysit on a regular basis for one of these blessed parents & you will experience a true blessing! The best people I know are not parents to "healthy" children and I think that is because they have experienced the full blessing that comes from these children.

I'm not saying that it is easy by any means, but I think that is why so few of us are chosen or called to be parents to these children. It takes time, compassion and patience - but those are qualities of so many people. Then why are there not more people who want this blessing! Most people view it as a burden - I am telling you there is no burden! I only feel an overwhelming sense of pride and accomplishment with my children. I think back to where they have come from and I can see their successes! I love that I was able to witness that and be here for that!

With "healthy" children how many moments do you have where you feel that way? Don't you love that feeling? It's addicting - don't you want more? If the answer is yes, get involved with one of these special children - it will change your life!

Opthamologist Appointment

2008-01-10T20:12:00.000-06:00

Okay, it took me about 3 hours of calling and searching for a pediatric opthamologist which would accept Rebecca's medicaid, but I finally found one! We go next Wednesday & Rebecca is not excited. She wants new blue glasses (her current ones are pink), but she does not want to see the doctor. She says that it hurts.

What do I need to look for in an opthamologist? I made sure that they had experience with RP and asked if they would provide an interpreter. None of them would provide an interpreter. They asked me if I knew sign language. Yeah, I know sign language but I would like to just be a mom and there supporting my daughter telling her it's going to be okay and holding her hand. Not interpreting when an interpreter should be provided for her. Then one asked me if she could write - YEAH I said emphatically (maybe a little too emphatic, but it ticked me off)! Like that was a substitute for an interpreter.

Anyway, so we are going next Wednesday to our first opthamologist appointment. I have never been to an opthamologist so I have no idea what to expect. Can you please provide me some insight into what I am getting myself into?

We Got Our Groove Back

2008-01-08T06:28:00.000-06:00

Things are finally starting to come together. We found our routine and we are on the ground running. The girls are getting their chores completed, homework is being done, we are even finding extra time to spend together as a family a couple days a week. We started cooking at home more which I think has actually somehow given us more time. Someone told me that deaf child have a hard time with kitchen items, so we are working on getting to know spatulas, skillets, ladle, etc. We are having fun and trying to teach some of those words that may be difficult for Rebecca.

The weather has been unusually warm here so we have also been able to go bike riding, ride scooters & walk around our neighborhood.

I bought a "Life Is Good" t-shirt the other day. I wore it out when we went grocery shopping which is where most people stare at our sign language. I thought it was funny because most of the times I get the "aww...poor family" look and I'm standing there in a Life Is Good t-shirt. I loved it, our life is good.

I saw a video the other day on line and it really opened my eyes about textile sign language. I had a vision of it being more in the hand not moving arms around, I feel much more confident about the language and teaching my daughter this eventually. The link to the video is http://ffh.films.com/PreviewClipFramed.aspx?id=10662

Please check it out!

There was also this local article that I thought was great! http://www.utdallas.edu/news/2008/01/04-004.html

Have a great day!!

Closed Captioning

2008-01-05T20:39:00.000-06:00

Okay, so I'm not very technologically advanced...but I'm trying to be better. We got Rebecca a larger television for her room which has closed captioning on it & also made sure that her new DVD player was also compatible. All was good, she watched the Polar Express & Chronicles of Narnia and I figured it all out - no problem. She watched it with the captioning on the screen. Tonight she wanted to watch Barbie's The Princess and the Pauper. I could not get CCing to work no matter what I tried. The case says it has closed captioning but it is not an option the setup menu & subtitling didn't work either. Her closed captioning is on the television & it is on with the DVD player, however the movie was not captioned!!

Anyone have any clues that would lead me in the right direction?

Interpreter Please

2008-01-03T19:17:00.000-06:00

I have gone round and round with the school's after school program. They say that they are seperate from the school and will not provide Rebecca with an interpreter. They say that if she can not be in a 17:1 ratio then she will not be able to attend the program. What is wrong with people? Is it so difficult to let an interpreter come in to the program? During school it is not so bad, Rebecca is in the afterschool program for about 2.5 hours. But, during holidays like now she is going all day without an interpreter.

I feel so guilty and bad for taking her there and leaving her where I know that she is going to have to struggle to hear all day. After her days she says that she has fun, but is also asking why can't she have an interpreter. She is never discouraged or looks frustrated after the program, but that is just part of Rebecca.

In a way I think that 2.5 hours is helping her to intergrate into the hearing world, but I can't help but feel guilty-which probably just comes with the territory. She is having to play with hearing kids and I'm sure learning lots of good skills that will make her into who she is. Right now I just want her to be learning more signs and building her vocabulary and I feel like those hours that she is there are wasted hours.

I wish I could stay home with her. I wish that we could afford to give her that. I wish I could give both of my children that - any hopefully someday that will be a reality. Right now I have to work.

Do you know of any daycares that sign? Is there such a thing? What do other parents do? Any suggestions on what else I can do?

New Years Thoughts

2007-12-31T21:28:00.000-06:00

I'm just thinking about 2007 & WOW what a year! We spent the entire year with a child in our home and at times more than one child. We fostered other children through respites and held a child until CPS could come and pick them up to take her back to South Texas. Each of the children that have came through our home holds a special place in my heart. Each one special in their own way. May God bless all the children that have been in our house.

My husband lost is job in June & we finalized the adoption for Jasmine in August. God placed Rebecca on our hearts this summer and she was placed in our home at the end of October. We started signing classes in October & had help and learned from books and videos before then.

Jasmine has matured into quite the 9 year old! She is handling situations so much better and making wiser choices all the time. I love seeing how God is working in her life - it's amazing!!

Rebecca has only been here for 1/2 the year, but she has also learned a lot. Her social skills have improved and she is now using complete sentences most of the time. I have learned so much from this 10 year old!!

This year my family has grown through trials and triumphs. We have all learned and continue to learn sign language and have made new friends in the deaf community. I have fallen in love with the culture and the people that I have met. I have learned that having two children is definately harder than just one. I find it difficult to distribute my time evenly between my job, two children & my husband. I will continue to seek to find the best way to feel satisfied in each of these in 2008.

Where's The Color?

2007-12-31T07:44:00.000-06:00

We are at Joe's dad's house and Grandpa put in some Betty Boop cartoons for the girls to watch while the adults visited. They started and Rebecca came to me with a concered look on her face and said, "Where's the color?". I did not realize what cartoon he had put in so I went over to the television and held back my laughter. I said, "This cartoon is old, they did not have color back when it was made. This is how it is supposed to be."

Kids, you gotta love them.

I Was Born Deaf

2007-12-27T10:31:00.001-06:00

On Christmas Eve there was a visitor at our church who was a Deaf gentleman in a wheelchair. A lady at our church introduced me to him and Rebecca looked at me and started signing "why". I knew what was next, I shifted my body between Rebecca and the man so that he couldn't see what was being said next. She said, "Why is he in a wheelchair - what happened?" and then she tried to move so that she could ask him directly without giving me a chance to answer - typical Rebecca. I interrupted her and told her that was rude, she said "why - what happened?". I said how would you feel if the first thing that he asked you was "Why are you Deaf?" - she said "Fine - I was born Deaf". She missed the point. Eventually, she gave up and didn't ask him.

Open Your Eyes

2007-12-27T10:22:00.000-06:00

This month this has happened to us on several occasions. We walk into church and are looking for a good seat for us in front of the interpreter where the 4 of us can sit together & Rebecca can see. We are signing so it is obvious that at least one of us is Deaf. The seats in front are taken by hearing people. I go up and ask them if there is any way that we can sit there, my daughter is deaf - some move, some don't. The last couple of times our family has sat seperately - my husband and Jasmine sit together & I sit up front with Rebecca. One time after our family has already been seperated, a tall hearing man sat right in front of Rebecca, so we switched places so that she could look down the isle if she leaned over to see the interpreter. I told the man, but he either didn't understand me or just ignored me. I think to myself, was I this oblivious before...I don't think I was. At least, I hope that I never did anything that insensitive.

I was worse around Christmas I think because there was more people, but also because they had more things that the congregations had to go up on stage fore like children singing, so the parents wanted to sit up close to see their kids and get pictures. I get that, but not when there is an obvious need for someone else to be sitting close - MOVE!!

Maybe this is just something that I am going to have to get used to. I was talking to a friend of mine the other day that has a handicapped boyfriend in a wheelchair. She has gone through similar situations. People just need to be more aware and compassionate - especially in church. If it can't happen there, what hope do I have for other public places with interpreters for Rebecca.

Sign Names

2007-12-25T08:52:00.001-06:00

It's funny to me how I never really thought about my family members names until we assigned sign names. We have Brittney, Bryde & Brookie - that was fun. Then we have William whose name used to be JJ so some people come him William and others JJ. We have Hailey who we call HayHay. Derek is JoBob. Andrea is Annie. Jasmine is Roo. The list goes on and on. Anyway, so what do we name - the legal name or the nickname? I let Rebecca choose and gave her both, like I would say this is Derek, but his nickname is JoBob - what do you want to call him?

We playes Cherrades, which Rebecca was of course awesome at. It was hard for her not to use the signs. Like 1 word that she drew was PHONE, the sign is what you act out - but she did great at it-she did it like it was a larger phone so it wasn't the sign. All the girl cousins painted each others nails and toes - we taught signs like wait, wet, dry. They really liked having Rebecca there and they learned a lot of signs.

Anyway, Christmas Eve was fantastic and I'm glad I got the opportunity to help think of unique sign names for my family members - everyone should put so much thought into a name.

Christmas Is Almost Here!!

2007-12-23T08:03:00.001-06:00

I'm so excited about this Christmas!! Last Christmas was our first Christmas morning with a child in the house. It was incredible. This Christmas there will be two children and with that comes twice the excitement. We still have gifts smuggled away in our room and may set some of them under the tree today. We are going to make a gingerbread house today, cookies & reindeer food tomorrow. We went to my parents last night and the kids got to open some of their first Christmas gifts. On Christmas Eve we are going to Oklahoma to visit with my grandmother - their great-grand-nana.

We are having a hard time with distinguishing between all the relatives and giving everyone sign names, but I think that we are doing it. Each name has a story behind it, like we will say "Nanny", do the sign, and then say "this is my mom, so it is your grandma & we call her Nanny". We realized this was going to be a trouble area pretty early on, we told her that we were going to see my mom & dad - told her their names & showed her pictures. Then we got to the house and she saw both of them and was asking for Grandpa, Joe's dad. It took us about 5 minutes to explain these were my parents, Nanny & Papa & that Grandpa was Joe's dad and we would see him on Christmas day.

This was my parents first time to see Rebecca, like everyone they couldn't get over how adorable she is & how much the sisters really do look alike. We had sent them pictures, but this was their first opportunity to see them. It was a night of a lot of learning sign language & they are going to take classes again with me in February. My family has been pretty great with seeing the kids as no different then their biological grandchildren. I am the first in my families generation to adopt, so my grandmother only had biological grandchildren before I adopted the girls. Joe's dad was in an orphanage growing up, so he has a special soft spot for the girls.

Nanny, my mom, was not so sure about me adopting a "special needs" child, but now that she has seen Rebecca I don't think that she would change a thing. To me, both of my children have special needs...Rebecca's is just more obvious.

I pray that everyone has a wonderful Christmas season! I'll let you know how it goes here, but I'm thinking it's going to be pretty incredible!

Big Decisions

2007-12-19T20:02:00.000-06:00

Our daughter has only been with us for a couple of months and we've had to make some pretty big family decisions already. When she first came she was placed in general education with an itenerant, within 2 weeks I could already tell that was not going to be a good fit for her. We worked towards finding a better solution for her education goals. She is now in deaf ed for her main curriculum and in general ed for science, health, social studies, art, music & P.E. This was a very difficult dicision because I can understand both sides of the coin. On one side with her just being in deaf ed only she would feel more accepted because all the children would be deaf & she would be able to build her sign vocabulary more. With her just being in general ed she would learn how to intergrate better with hearing children and learn more oral skills. Her vocabulary is only that of a 5 year old even though she is 10 years old. I believe that by her being in deaf ed, they will build her vocabulary by giving her the extra attention that she needs to understand each word. I'm very excited and optimistic about her education future. We of course are reinforcing the same objectives at home that the school has for her. They are things like speaking and signing (simotaneously) in complete sentences, counting money, telling time, etc.

We also had to choose which sign language we were going to use. Her school and our church signs SEE 2, so for right now we thought that would be the best option for Rebecca. It would give her more consistency and help her to learn to write and speak in complete sentences. I have nothing against ASL, PSE or any other language. I just believe that for now SEE 2 would help her the most because it will give her consistency. If her school and our church used ASL, then I am sure that we would be signing ASL. Later after she has a language foundation, we plan to teach her ASL but right now I don't think it is the right option. Again, this was not an easy decision but probably one of the most important decisions.

Deciding to move forward and have Rebecca in our home was an enormous decision. My younger daughter had only been with us for one year and we were about to finalize her adoption when God opened the door for us. There were many steps in getting her in our home and everyone was skeptical and looking back at them I don't know if I can blame them. Our other daughter was barely getting her ground in being a family, she also has had in the past major behavioral concerns, the children were specifically seperated by CPS, Jamsine's file said for her not to be placed in a home with any special needs children & we didn't know sign language. We had just a few things to overcome, but we started learning everything that we could about the deaf community, learned sign language, prepared our other daughter & did a lot of praying and lobbying for her.

Every parent has to make decisions that effect the outcome of their childrens lives. I pray that the decisions that I have made are the correct ones. I know that having Rebecca in our lives has only improved us and our family. We had to work hard to get her in our lives, but I would do it all over again in a heartbeat.

What A Day In My Life Looks Like

2007-12-14T07:32:00.000-06:00

This morning like every morning I got up at 4:30am, took a shower & got ready. At 5am, I woke up Rebecca - this takes about 20 or 30 minutes to get her out of bed. It is difficult to wake up a child who cannot hear and will not look at you. She covers her head with pillows and blankets, which I remove 1 by 1 until there's none. She then uses her hands, legs and chest to cover her head. After shaking her, tickling her, motioning and talking to her when I can, she finally sits up in her bed. Then she normally lays back down & we play that game a few times until finally she is standing - sometimes she lays back down after I leave the room and we get to start all over again. By 5:30 she is usually in the shower and out by 5:45. For those 15 minutes I am getting lunch together and listening to the weather, because once she is out of the shower she wants to know the weather so that she can spend the next 10 minutes figuring out if what she picked out the night before is still sufficient, which most of the time she finds that it was not good enough and wants to change her outfit again. After the clothing drama is complete, she starts to eat the breakfast that I have made for her in the 10 minutes that she was changing clothes and getting dressed. Now we only have about 15 minutes before the bus gets here, so I am brushing hair while she is eating. I also get her cochlear implant out with her glasses and set them on the table for her. After she is finished eating she puts on her shoes, grabs her backpack, jacket & lunchbox. While she is doing that I am turning on Christmas lights & our sidewalk lights so that she walk independently to the bus. If we have extra time before the bus comes, we make sentences out of sight words. Once the bus is here, about 1/2 way to the bus we do the textile ILY and then we hug. I wave to her as the leaves on the bus.

I then have about 30 minutes before it is time to wake up my other daughter. During those 30 minutes I pick up around the house and do my daily devotional.

At 7:45, it is time for round 2. I wake up Jasmine which goes a lot quicker getting her out of bed, but she takes longer in the shower and is really slow at getting dressed. While she is in the shower I am making lunch #2 and while she is getting dressed I am cooking her breakfast. I normally sit down and eat breakfast with her - this gives us some special time since the rest of the day will be more about Rebecca. She then finishes getting ready for school & I drive her to the school which is about 10 minutes away. We do a small devotional on the way to school with a memory verse and we also talk about anything else that is going on today - appointments, activities, etc.

After I drop her off, I am off to work. I work in the real estate field, but I am not a Realtor. My boss has been very good about offering me flexibility, even though my job is not a very flexible position.

Rebecca goes to an after school program and I pick her up around 6pm. We live 45 minutes from the school, so I spend all of that one-on-one time with her. Once we get home, we usually go out to eat (I know, I'm horrible - but it is 7pm!). While we are out we are all pointing things out and filling Rebecca with words. When we get back home it is around 8pm and now the girls get ready for bed. After both the girls get ready, we talk about our day - name the favorite part of our day so that we can thank God for that. Then we each take turns with saying prayers and I interpret the prayers for Rebecca.

If both girls have had a good day and have not lost any privileges, they can earn "bonus time", this is time that they have to do an activity of their choice before bed. It can be a bedtime story, finishing something that they started earlier that day, watching television, playing on the computer, playing with toys, etc. They both really work hard all day to earn this time. If they lose this time earlier in the day they also have chances to earn it back. While they are having their bonus time, I am making a bedtime snack and getting each of the girls a water.

After we pray and have bonus time, we go individually into each girls room and tuck them in and say goodnight. I remove Rebecca's CI and glasses. We do the textile ILY with both girls and continue signing everything that I say to them. We hug and kiss them and then it is time for bed.

They finally get in bed around 8:30-8:45. Now my husband and I go to our room and write the notes for the day, and anything personal that we need to discuss. I turn on the television and maybe get through one of my shows or finish the one that I started the night before. We are both exhausted and go to sleep around 10pm. Now we are ready go get up and do it all over again.

The weekends, school activities and other things of course come up that make this much more fun, but this is our normal day. We try to go to as many school activities as we can. Last month I went to a pep-a-rally, science fair, story time (that had an interpreter) and a school dance. We've also had Christmas parties, gave out gifts to the less fortunate in our city, had Foster care yearly training, CPS visit, agency visit and went to a holiday breakfast. This next week I will have 3 more holiday parties, school parties and caroling.

We never have a dull moment and try to get the girls as involved as we can. Everyone knows Rebecca and she melts hearts where ever she goes. I want her to experience everything that any child would experience. I think that is really important.

Our life is pretty normal except for us having to count stairs, make sure everywhere is lit well, having the long commute to and from school, dealing with 2 different school districts, guiding in crowded situations & always having to explain the condition to people who don't know better.

Anyway, there's my life in a nutshell.

Thank You

2007-12-12T12:01:00.000-06:00

Thank you to everyone for your suggessions. You have wonderful ideas and thoughts. I can only imagine and try to guess what Rebecca is feeling, you guys know what is going on & I appreciate you sharing your experiences and thoughts with me. Thank you for your support.

Does She Lipread?

2007-12-09T14:00:00.000-06:00

I am starting to really get annoyed with that question? When we are at a playcare, McDonalds, ordering food or anywhere that there is involvement with hearing people I get that question right after the OOOHHH. Rebecca is a very outgoing child and I love that about her. She will start talking and you can tell that she is deaf from her voice. I will start signing to Rebecca what that person just said and they will say, "OHHHHH, does she lipread?" In other words, I really wanted to talk to her, but if she can't read lips I don't have the time for you to interpret for me.

I say, "Yes, she can lipread a little bit - but it is better if we sign and talk to her". They may stick around and talk a little more but you can see their attitude changed the moment I said yes. I have also said in the conversation that she has an implant and that is like giving the hearing person a license to not look at her as much when they talk, so I don't point it out unless they ask. I have also noticed that they tend to talk to me after they know that she is deaf, not to her. That is also annoying. You are having the conversation with her, not me. This even happened with Santa Claus.

There have been a couple of instances where people have talked to her more than me and thos people normally have some experience with the deaf community or even know some signs.

How do you respond to the question, "Do you lipread?" Is it easier to just say yes or is there a better response? I have educated the people that we talk to all the time, but the others I generally just tell them yes-a little bit and go on. I mean she is ten - lipreading is very difficult I have tried it and find it very tiring and hard. She can get around fine in the hearing world and has had to be left without an interpreter and has been fine. This is not the norm and I do try to be there with her or at least have her sister with her to help, but there are some instances that we have not been able to avoid. I am hoping those times will help her be able to cope in the hearing world better. We have learned to ask ahead of time if someone can be there to interpret, most of the time there is not and I try to be there. We were also caught off guard one time at church without an interpreter - it was a special event and I just assumed there would be someone there - there was not and the speaker had a beard, an accent and carried the mic in front of his face. I learned my lesson very quickly.

Anyway, I got a little off track - "Do you lipread?" What are you feelings on that question? Personally, it irritates me and just tells me that they are looking for the easy way out.

Awesome Kids

2007-12-08T08:48:00.000-06:00

Some days one of the children will come up to me and say something that just makes me realize how far they have come. Even Rebecca so far, even though it hasn't been that long. Rebecca is now asking for most things in a complete sentence without me helping her with every word. Jasmine is now talking most things out instead of everything coming out in the form of anger.

These children have overcame in are still overcoming big obstacles. I love that I get to see that! Jasmine is learing sign language and we are all using total communication in our home. Everything that is said is signed and voiced at the same time, even if we are saying it to the dog!

Both of my children are incredible, awesome and inspiring kids! I know that they will go on and become terrific adults who advocate for Usher Syndrome and foster/adoptive children. They keep me and my husband going. We can wake up on an emotional empty and they fill our cups.

Today we are going to a Christmas party with the kids. I can't wait for all the new words that I will get to share with Rebecca today. We have started her word book with magazine pictures and today I know that I will get more photo pictures that will help her.

Thank you everyone for your prayers, I want to let you know that they are being seen in our family.

Growing Up

2007-12-03T20:01:00.000-06:00

How do I talk to Rebecca about puberty? She doesn't even understand some simple concepts. How was you told about your monthly visitor? I've gotten several peoples opinions, but wanted to get more.

Here sister is almost 9 and we've already had "the talk" with her. I feel that being open and honest is the best and I would rather tell them then to have them surprised when it happens.

Rebecca's vocabulary is still close to a 6 year old & sometimes not even that. She is also emotionally immature and I have this horrible vision that comes across my mind. She runs up to strangers and says "You bleeding?". I know that may seem silly to you, but I am serious - I could really see her doing that. We are working on so many things with her right now while still letting her be a kid. I am afraid that she is not ready for the conversation, but I do not want her to be shocked when it happens either. Please help.

Thanksgiving

2007-11-23T12:34:00.000-06:00

I have so much to be thankful for this Thanksgiving. I've been thinking about it all day.

Of course my family is at the top of the list. Three years ago, I had no children and only a great husband. Today, I have 2 fantastic children and a wonderful husband. God has truly bless our family. I am honored that God has chosen this family for me.

I am grateful that Rebecca is with us this year. A year and a half ago, I got a call to do respite for a little girl for 10 days. We were interested in a adopting another little girl at the time and figured it would help the time to go by faster. Who would have thought that call and that child would start all of this. We now have her biological sister and we are working on getting her adopted as well.

I am thankful that God always seems to create ways for us to get by. My husband was laid off work right before summer. That was exactly what we needed really now that I look back on it. Joe was able to stay home with Jasmine and get things ready for the adoption. It also gave us more time to spend with Rebecca. Our friends and people we don't even know gave us little miracles and I am grateful for God sending them to us just when we needed it.

I am thankful that I can be a part of the deaf culture and have an opportunity to pass that along to my children. The deaf culture has really opened my eyes to alot of things that the hearing do. I am grateful to everyone who has shared the culture with me.

I hope everyone had such a "thankful" year as I have had. Happy Holidays!! May the blessings continue to flow.

Mainstream Or Not To Mainstream

2007-11-13T21:28:00.000-06:00

Mainstream...what does that mean to you? To me it has meant frustration and disappointment. I can't imagine that Rebecca could possibly be happy struggling in school. We are spending about an hour everyday on homework after school just trying to get her to understand what the project is or what the questions are asking. Once she understands she gets it. She is very bright, but understanding the comprehension of the questions or problem is the problem.

Last week they did testing with her. She has been mainstreamed for aobut a month now, 2 weeks in her old school & 2 weeks in this school. I don't know if she is just not ready to be mainstreamed or if she just needs modification to her homework. We just got the results from the tests today and everyone is reviewing the results. I'm torn on what to do. They say that she is only about 6 months behind her grade level, but I just don't know if that is completely accurate. Her sister is in the same grade and there is a huge gap between what Rebecca can comprehend and what her sister comprehends.

She has an interpreter to help her and another student in her class. I'm happy with the school so far. We are going tomorrow to do her FM testing for her FM system and that may help her too.

This is such an important time in school and I don't want to hold her back if she is ready to be mainstreamed, but it just may not be the right fit for her either. I just want her to be the best that she can be and if that means that she will never be mainstreamed, then I am fine with that.

National Adoption Month

2007-11-04T13:04:00.000-06:00

November is National Adoption Awareness Month. This is near and dear to my heart obviously since I have domestically adopted one of my girls and we are in the process of adopting her sibling. If you have room in your heart and room in your house, adoption and/or fostering children will change your life.

Both of our children were adopted from Texas and each state has their own laws, but if you have any questions or concerns, please feel free to ask me questions. We have been a foster home for almost 3 years and adopted one of those children. Now we are fostering her sister and waiting until she is available for adoption.

There are so many children that just need families. Fostering is not an easy task, but I can tell you that it does pay off and you can change those childrens lives.

Some famous adoptees are Aristole, Nat King Cole, Halle Berry, Melissa Gilbert, Scott Hamilton, Faith Hill, Langston Hughes, Malcolm X, Eleanor Roosevelt, Nancy Ragen, Leo Tolstoy, John Lennon, Marilyn Menroe, Mark Twain, Gerald Ford, Alexander The Great, Louissa May Alcott, Richard Burton & George Washing Carver. Someone had to make a choice to change each one of these peoples lives. Who knows who they would have became if someone didn't decide that they could change their lives.

I've included some links that can help you if you are considering fostering, adopting or are an adoptive or foster parent.

http://foster-child.adoption.com/
http://adoptivedads.org
www.adopting.com
http://www.howtoadopt.org/
www.adoption.com
http://adoptivefamilies.com/
http://www.dfps.state.tx.us/adoption_and_foster_care/
http://www.tapestrybooks.com/default.asp?r=c1

I've heard it said that 1 out of 20 people are somehow affected or know someone who is affected by adoption. Please take a moment out of your busy day and pray for these children, foster parents & adoptive parents.

Here is a prayer that I pray weekly (I try to do it daily, but I only make it about 4x's a week):

Lord, I pray for the physical, emotional & spritual health of all foster/adoptive children & their parents. I lift up all children that are currently being abused that you will provide them with an abiding sense of safety and security during their lifetime and give them the courage to face the problems of each day. I pray for you to give all people affected by these lost children a calm spirit to hear your voice Lord, to direct them through their day today. Give the children a clear mind, both to learn and to recall and an unshakable self-worth and personal dignity. I pray for wisdom for the teachers, mentors and counselors that will be a part of these families lives today. Thank you Lord for my children that you have blessed me with, help me to live up to your plan with them today. Fill me with your love, so that I can enstill that same love in them.

We Survived Halloween

2007-10-31T20:39:00.001-05:00

I made it through my first Halloween with our new daughter Rebecca who has Ushers Syndrome 1. We only ran into 3 parked vehicles, ran off of 1 curb and ran over 2 kids. I think we did okay. Thank everyone for their suggestions. I got flashlights for everyone in the family and we used them to help light her path and for her to find us when she turned back around (great suggestion). Her school has a class that she will start next year to help her learn to walk with a white cane. I didn't have a clue where to start teaching her and during the day she is fine. We are rarely outside after it gets dark, so I think that we will be okay waiting until next year. Her vision during the day is fine other than her peripheral vision. She still runs into people from the side and doesn't see doorways very well. She will forever have bruises on her poor little arms and knees.

It's A Girl!!

2007-10-29T08:02:00.000-05:00

Rebecca has finally arrived!! We spent all weekend in East Texas at a wonderful Bed & Breakfast. It was fantastic! We took the girls to ride Thomas the Train, they fed horses, etc. We met the owners of the b&b when we adopted Jasmine. They are going to be foster parents as well-as a matter of fact they are getting 20 month old triplets today for 1 week. They are great people and we have been blessed to know them.

We finally got home last night and got Rebecca about 1/2 way unpacked (1 of two trips) and Jasmine had a huge tantrum. The tantrum was over nothing, of course, but super rageful. This is going to be hard for her - it's hard for all of us, Rebecca included. I pray that today will be better.

We have all of Rebecca's CI stuff and all her old CI stuff. I don't know what 1/2 of this stuff is. Rechargable batteries, Mic Lock, audio cables, adapters...it goes on & on. I do know that what she has now works & I'm going to get on Cochlear's website and try to figure out the rest. I have been told that the rechargable batteries only last about a 1/3 of what the actual batteries last. We have one box (60) batteries left. I think that will last about 2 more months.

Rebecca is going on and on about getting her ears pierced. I think that we are going to try to get them pierced for her birthday. I don't think that there are any problems with the implant and earrings. I don't know the sign for earrings, but I know that is what she is talking about - she is tugging at her ear & showed me her sisters earrings. We are doing a lot of that lately - I becoming quite good at Cherrades.

Halloween

2007-10-25T06:35:00.000-05:00

I've been a lot more aware of dark restaurants, crowded situations, our traditions that include evenings, etc. One of these are coming up & that is Halloween. Normally for Halloween here's how it goes - we go in the afternoon after school to our town square where they where their costumes and go from store to store gathering candy, get face painted, bounce houses, etc. Then we go to our church which some is inside and bright & other parts are outside and dark- we make an appearance there, play some games - get more candy. Then about 8pm, we walk around our neighborhood doing trick or treating before we come home and go to bed around 9pm.

This was what we did last year and I'm sure what Jasmine is expecting this year. Our church is not having the Fall Fun Fest this year, so I know that will be removed. Which would leave more time to trick or treat around the neighborhood after going to the town square. Except that Rebecca is going to be with us this year. Should we just take flashlights & go trick or treating or should I make a big deal out of her helping with the candy? Should I just ask her what she wants to do? The home that she is coming from has a fall fun fest at their church and just spends the evening there with her. So, this will be totally different for her.

What are your traditions with Halloween? Am I over-reacting (sometimes I do that too)?