Saturday, October 20

Following My Heart

Hey everyone! I've never blogged before, so I hope you enjoy.

God started my journey a long time ago. Several years ago I had a realization of my purpose here on Earth (I'll write another blog later about that). I felt that God was leading me to foster children - well He has super blessed me and I not only fostered a child for a year, I adopted her as well. Now, God is leading me down a different path to adopt her biological sister who has Usher Syndrome 1.

We started learning Sign Language as a family (SEE for now). The child that I have already adopted is 8 and her sister is about to turn 10. We are hoping that she will be in our home shortly. We have been working on getting her sister placed for about 5 or 6 months now (it seems like forever).

The sister received a CI a couple of years ago on 1 ear. I keep reading and have even witnessed the Deaf communities views on CIs. However, I feel like since she is going to be Deaf and blind that it is imparitive that we give her as much hearing help as we can. I have not been able to locate any feelings on the internet about if it is more acceptable to the community if she is also going to go blind.

The home that she has been in for the past 2 years has hearing parents, 1 of which is an interpreter. I will encourage Deaf culture in our lives and have already incorporated much of that in her room, our house and just our actions. I do not want her to lose her "deafness", but I do want her to be the best person that she can be.

I just don't know how far to take it. CPS has encouraged us not to use signing in our house unless it is a desperate situation - I don't agree with that! I want her to be around just oral environments as much as possible so that it will grow her dependence on her hearing, but I don't want her to lose the Deaf culture either.

If you have any suggestions or experiences, please share.

13 comments:

mishkazena said...

Would CPS be Child Protective Services? If so, they are out of line in recommending that you not permit deaf kids to use sign language. They don't have the specialized training.

Lantana said...

Oh boy! CPS did that? Said that?! My claws are out,and I have long ones!

I think this child needs all of the guidelines that she can receive! Is she learning Braille? That, too!

Hopefully in this child's lifetime there will be a way to eliminate Ushers.

Lantana

NightOwl said...

Hi Candice, looks like you'll make a good mother to both your kids. Yeah keep on using sign language for both your kids especially the new one soon.

Heck with CPS.

Good luck on your new journey.

Christine said...

Hello,

I was delighted to find another blog in the cybersphere where it openly discussed Usher's - whether it be negative or positive. My name is Christine Roschaert, fondly known as Coco. I run a website dedicated to Deaf Blind-hood (the experience of going through Deafness and Blindness) and cover many topics from medicine to news to spotlights. I have Usher Syndrome I myself, like your future daughter. I grew up in a Deaf school, surrounded by Deaf people growing up - even my parents sign. I sign ASL fluently, and also 2 other sign languages, and write French/German. I can understand where you are coming from, and what your daughter feels - at any level of her vision. I strongly believe in using tactile sign language as the best and most effective way of communicating, because, Deaf Blind people use touch more than any other sense (well, taste comes in a close 2nd). Your daughter can "hear" things but she cannot see lips to read when she eventually becomes blind. Please go to my site tactiletheworld.wordpress.com and you will see a list of resources on the right side. Contact me if you have any questions.
Bless you... and your daughters are very lucky to have parents like you and your hubby.
Take care,
Coco

Michelle D said...

What you have done for your 2 kids is incredible!
I'm married to a wonderful guy and he has an Usher's Syndrome. His distant cousin grew up in an oral school and she also has Usher's Syndrome. She's soon to be fully blind. She's being very irritated and agitated because she's not being able to communicate. She never learned sign language. She's about 50 years old. Right now she's in training school learning how to sign and live independently. Her older sister has Usher's Syndrome, too and she realized that she needs to learn sign language and tactile, too. She's losing her vision slowly.
It's ok to learn speak but please do not rely on oral for your kids' future. Only way they can communicate by sign language and tactile.
CPS don't know what they are doing. Heck with them.
Do what you think is best for your kids - think about their future - not their present.
We, deaf and deaf/blind people will be with you all the way! Ask us questions whatever you have. Even if it's a stupid question, ask them anyway!
I agree with Coco totally. She's amazing! Please do go to her website! Full of resources!
Smile!

deafk said...

Welcome, Mom,

So glad you are joining us with DeafRead.com. I agree with Mishkazena, Lantana & NightOwl. You need to ask this CPS where they get the information that sign language is not allowed. Be specific. Like MZ, they don't have the certain training. Usually, with their crush course or basic training (one hour per week twelve times training) tend to not cover the whole Deaf culture or person.

Be conscious for your daughters. Daughters are lucky to have you. Please feel free to ask us for any question or concern.

Thank you, deafk

Deaf Pixie said...

What? Why CPS advised you to teach the deaf kids without ASL.
Remember that CPS often no training with Deaf kids before without or with seeing.

Don't listen CPS, They are no training about DeafBlind kids. Usher Syndromes have so many different than deaf people. I recommend you to contact Coco. Tell her where location and place you can researching more
information about Usher Syndrome.

Best way to learn ASL now with the children need you to communicate with ASL hands. More easier.

I am very disappointed CPS's theory seem harshed and no training at all.

Think about it? Good luck

Candice said...

I am NOT going with CPS recommendation & this is not my first time disagreeing with CPS. I can see what they are trying to do and I halfway understand it. I have read "Deaf Like Me" and I think that they share some of the same mentalities. I can see how someone who hasn't spent time with a child or anyone who is deaf or deafblind could think that you could force them into oralism, especially knowing that they won't be able to utilize the sign language forever. I am working to educate them (as I find myself doing alot) on the other opportunities such as tactile. You would think talking to them that oralizing her is the only solution - thanks to the internet and great advice from friends I know that it not our only option.

Hi Christine, I have been to your wonderful website and will definately have to revisit it again - I've been so MANY places but yours is definately one that come up again and again.

When should I start teaching her tactile?

Thank ya'll all so much. It is comforting that we are going into this with so much support.

Karen said...

One thing that I've learned as a mom to three deaf and hard of hearing kids is that you will always be exposed to other people's opinions of what is best for your child.

I've learned that other people's opinions (even when based on professional "expertise") is just that: an opinion.

The bottom line is this-- what does it take to communicate with your child TODAY, as they are right now, to build language and guide them to reaching their fullest potential?

Deaf Pixie said...

Candice,

Glad you did not listen CPS's recommend seem not fitting for their need.

you did right thing to search for your help to contact for deafblind service in your hometown.

Wonderful idea to learn braille for you to learn with the child(s)

Good luck and wonderful to adopting them.

Christine said...

Candice,

Good question. What degree of field/tunnel vision does Rebecca have? I started learning tactile when I had 10 degrees left, right now I have 5. I learned it 3 years ago and it's been a lifesaver. It's helped rein in my friends and family more closer, forced them to see that omce they are comfortable with tactile, they can be comfortable with having a loved one who is blind.
But I wish I had learned tactile once I learned I was night-blind, which was in 2000. Four years went by, and I was not invited to camping trips or nightlife anymore because I could not see or communicate at dark. Now that I know tactile, I go camping and go to bars whenever I can!
My email is tactiletheworld@gmail.com

I read your other post about finally adopting Rebecca - I could not be any happier for anyone more than I am for you, Rebecca and her new family. God has blessed her with such a wonderful family, and vice versa.

Congratulations.

Barb DiGi said...

Hi Candice,

I can see that you want the very best for your Deaf child and I commend you for opening up in your blog. Coco is a great person to discuss about Ushers.

I am just surprised that a CPS suggested you not to use signs. I would like to know why was that. Wondering if AVT has something to do with it?

About learning SEE before ASL, there may be a problem. As my hearing colleagues in teaching field told me, they are having a hard time to do ASL because they learned SEE first. It is difficult to undo the programmed artificial language when trying to do the real language.

Check out http://commtechlab.msu.edu/sites/aslweb/browser.htm

and

http://www.lifeprint.com/asl101/

Lisa C. said...

Hi Candice,
I'm glad to hear that you didn't agree with the CPS. I disagree with them, also. I don't like this. They are ignorant and need to be EDUCATED!
I have a deaf friend I grew up with and her name is Betty who is deaf and has Ushers. She has been using ASL since she was 10 when she was able to see. Now she has a tunnel sight and had learned how to feel the hand signs so she will be able to communicate with anyone when she goes blind. She's learning Braille. Your girl is blessed to have you who use ASL. Some of my husband's clients are deaf/blind and he communicates with them by feeling the hand ASL.