Wednesday, February 6
Moving Onto The Vision Stage...
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!
Sunday, February 3
Cute Times In Recent Days
Today in church, the kids all learned a song in sign language and preformed it in church. Rebecca's eyes got so big & she just couldn't stop saying, "Oh my Gosh". It was wonderful!! I am so greatful for my church and all that they have done to welcome Rebecca and anyone in the deaf community. Rebecca is the only child in our church that is deaf right now. I hope that others will start to join and we will be there to help welcome them.
The other night Rebecca came home saying that she needed money for Monkey Plano. I had her sign again thinking I must have misunderstood her "Monkey Plano??" Plano is a nearby city and she even fingerspelled it for me the second time. I just still did not understand. I asked her how much money and she said $50 for Monkey Plano. Ok, now I must know more - I'm not giving my 10 year old $50 for a monkey plano (whatever that is). Anyway, I emailed her teacher who was very responsive and said that there was a monkey who needed help and the kids were asked to bring in money to help transport the money to Florida. .50 would be great! So, the Monkey Plano mystery was solved. Rebecca got $1.00 out of the money that she has saved and gave it towards Monkey Plano - whose name is Pat, but in our house will always be known as Monkey Plano.
Anyway, these are just a few chuckles that we get around our house. God Bless Monkey Plano!!
Saturday, February 2
Ushers & Blue Film????
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.
Tuesday, January 29
Disposable Kids???
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%.
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.
Sunday, January 27
Sign Word Challenge
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!!
Thursday, January 24
Glimpse of the Future? I hope so!
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/
Wednesday, January 23
Presidential Candidates
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
Tuesday, January 22
Is Deafness A Cultural Nationality?
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.
Monday, January 21
Opthamologist Continued
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?
Sunday, January 20
Silly String Fixes Anything
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.
Friday, January 18
Immediate Response Needed!!
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
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.
Tuesday, January 15
Some Success
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
Motor Development of Deaf Children With and Without Cochlear Implants
from the Journal of Deaf Studies and Deaf EducationThe 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, 2008This article just left me with just one questions - "Then why are we implanting?"
Sunday, January 13
Better With Or Without a CI?
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.
Saturday, January 12
Blessed With Heathly Children?
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!
Thursday, January 10
Opthamologist Appointment
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?
Tuesday, January 8
We Got Our Groove Back
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!!
Saturday, January 5
Closed Captioning
Anyone have any clues that would lead me in the right direction?
Thursday, January 3
Interpreter Please
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?
