Tuesday, January 29

Disposable Kids???

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.

Sunday, January 27

Sign Word Challenge

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!!

Thursday, January 24

Glimpse of the Future? I hope so!

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/

Wednesday, January 23

Presidential Candidates

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

Tuesday, January 22

Is Deafness A Cultural Nationality?

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.

Monday, January 21

Opthamologist Continued

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?

Sunday, January 20

Silly String Fixes Anything

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.

Friday, January 18

Immediate Response Needed!!

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.cgihttp://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 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.

Tuesday, January 15

Some Success

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

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 K├Ârperkoordinationstest f├╝r 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?"

Sunday, January 13

Better With Or Without a CI?

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.

Saturday, January 12

Blessed With Heathly Children?

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!

Thursday, January 10

Opthamologist Appointment

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?

Tuesday, January 8

We Got Our Groove Back

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!!

Saturday, January 5

Closed Captioning

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?

Thursday, January 3

Interpreter Please

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?