Ashley's CI surgery

We went with the Med-El baby bte. I am not sure how the battery thing will work out but I have gotten some very good advice. Thanks. I am going to ask about her Medicaid paying also.
 
We went with the bodyworn controller so we just use rechargable aaa batteries that came with the device. We also use standard aaa batteries sometimes too.

I feel like such a stranger. I have been so busy, but I feel I need to catch up and see what is going on with everyone lately!
 
I understand busy. Ashley's daddy plays with her in the evenings when he gets home so I take a few mins to myself. We are going to have to go to the next meeting. Ashley had a doc appointment that ran long and we didn't get out in time to go. They are having another in April or May. I will have to look back at my email. We have a little while till she is able to attend according to the contact from the school that I have been speaking with. I will let you know what I find out as soon as I can. I am anxious to find out myself. Thanks for asking.
 
We have a little while till she is able to attend according to the contact from the school that I have been speaking with.
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Awesome! How long? And this will be awesome.......I actually think that for the first couple of years of schooling, you should have her schooled exclusively at the Deaf blind school. That way she can build a foundation for learning at mainstream. Does this school offer instruction in Braille? Even if her sight is pretty good, have her enrolled in Braille classes. I have a friend who's blind, and he just got basic low vision accomondations, and never learned Braille, even thou he went to Perkins for high school! (this was a couple of years before the Braille literacy comeback)
 
I want her to learn braille as well as sign. With her history I want her to be able to communicate no matter what her future may hold. Even though things are improving they can go bad just as fast. They said she can start there at 3. She will be 2 in September. She can start a program through mainstream at 2. I am waiting to hear from them about that. The 2 year old program is half day.
 
ashleysmommy said:
I want her to learn braille as well as sign. With her history I want her to be able to communicate no matter what her future may hold. Even though things are improving they can go bad just as fast. They said she can start there at 3. She will be 2 in September. She can start a program through mainstream at 2. I am waiting to hear from them about that. The 2 year old program is half day.
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That is a good approach as you never know what the future holds. The CI for my son had no benefit and I have learned from others that there are many such cases. Even if the CI works you should still persue sign so that she can communicate with her deaf peers and be part of the deaf community. I wish you all the best regardless of your choices as long as they are out of love for your child and not for selfish reasons. I have read your posts and I feel confident that anything you do for ashley is out of love. :cheers:
 
She's so very lucky to have such a wonderful supportive family!
 
Thank you. I just want her to know she can do anything. She will just have her own special ways to do somethings. This makes her special. I want to give her all of the resources available to her to help her with communication. Hearing is not guaranteed with her Ci. Just as her vision could also get worse. If she learns sign and braille she will not have a hard time if she doesn't hear or looses her sight. Even if the Ci works she still needs sign to communicate when she can not wear it or if she ever has a failure. I am going to learn with her and encourage other family members to learn too.
 
ashleysmommy said:
Thank you. I just want her to know she can do anything. She will just have her own special ways to do somethings. This makes her special. I want to give her all of the resources available to her to help her with communication. Hearing is not guaranteed with her Ci. Just as her vision could also get worse. If she learns sign and braille she will not have a hard time if she doesn't hear or looses her sight. Even if the Ci works she still needs sign to communicate when she can not wear it or if she ever has a failure. I am going to learn with her and encourage other family members to learn too.
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Awww that melts my heart! Ashley is lucky to have a dedicated mom like u. :)
 
I want to give her all of the resources available to her to help her with communication. Hearing is not guaranteed with her Ci. Just as her vision could also get worse. If she learns sign and braille she will not have a hard time if she doesn't hear or looses her sight. Even if the Ci works she still needs sign to communicate when she can not wear it or if she ever has a failure. I am going to learn with her and encourage other family members to learn too.
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Excellent!!!! I really do applaud the way you're raising Ashley. Tell her service providers that you really want her to be able to have the abilty to use all the options out there. That includes: Braille, large print, O&M, assistive sight technology, residual vision habilitation, ASL, speech etc etc................
 
Oh and the reason I'm telling you (Ashleysmommy) to be very assertive/ proactive in trying to get Ashley a full toolbox, is that a lot of times they'll be "Oh no.....she really doesn't need this or that. She can do just fine with just this." You have to tell them "Yes, she DOES need this AND THAT! Yes, her vision test says that she'll be able to be a large print user and make use of her residual vison........but, I want her to be able to read Braille and make use of touch as well!" It really does rock that you're so openminded about all the approaches possible! This is really exciting. Have you joined the American Society for Deaf Children yet? You really should.......it's a great organization....I can't wait to see how Ashely will develop......
 
She has a case worker from the Virginia Department for the Blind and Vision Impaired. They come out and evaluate her every 6 months and send books, toys, and big kits of things to help her. They will help her until she says she doesn't need them. They have qualified her for all kinds of programs. They will provide her will braille supplies, special computers, and job assistance when she is old enough to work. We have gotten so much from them already.
Her vision teacher is working with us on signs. Ashley is a hard sell right now because she still has touch issues. She doesn't like you to take her hands to show her things. We have to move really slow with her. She is getting it though. Being a preemie she has had to overcome so much. She is doing great though. She gets PT, OT, Speech, and Vision therapy until she is 3 through Early Intervention. She has a case worker at the Community Services Board that said we can get services past 3 if she is still in need. We get lessons from the John Tracy Clinic too. They are fun. Sorry to be so long winded. She is a busy girl. Thanks for the info on the American Society for Deaf Children. I will look into that today.
 
Oh that's awesome that you've gotten so many good resources already!
And they are not generic........fablous. Just thought I'd caution you about how sometimes service providers will have the attidtude "Oh they won't need this or that." You really need to stand your ground with those types of people.....
Oh and that rocks that you're doing the home program from John Tracy........is that part going OK? Are there any Auditory Verbal therapists in your area? That might help Ashley with speech. Most oral sucesses tend to be grads of the private oral programs. But, I do think that Ashely will have some speech skills.........
 
Her speech therapist is a licensed AVT. They switched Ashley to her when she was approved for Ci surgery. I always push to get Ashley things. I ask a lot of questions too. I call till they are tired of seeing my number of the caller ID. Thanks for the info by the way. She is also signed up with the Virginia Deaf-Blind Project. The John Tracy thing is going great. They send us fun games and signs to learn. She enjoys our play time. I try to make it fun so she will stay interested. I don't push because I want her to see these things as a positive and not something negative. So far so good.
 
Oh here is the webpage for the American Society for Deaf Children:
American Society for Deaf Children
I try to make it fun so she will stay interested. I don't push because I want her to see these things as a positive and not something negative.
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AWESOME!!!!!! That is so cool! I wish there were more parents like you!
It's so cool to hear from a parent who thinks Auditory Verbal therapy is a good thing, but isn't devoted to the auditory verbal mentality of " therapy 24/7".........don't forget......Ashley will and can benifit from therapy......just remember that she also can significently benifit from downtime. Please don't turn into one of those parents who is a SuperTherapist type. Just remember Ashely will need BALANCE in her life.
 
ashleysmommy said:
Her speech therapist is a licensed AVT. They switched Ashley to her when she was approved for Ci surgery. I always push to get Ashley things. I ask a lot of questions too. I call till they are tired of seeing my number of the caller ID. Thanks for the info by the way. She is also signed up with the Virginia Deaf-Blind Project. The John Tracy thing is going great. They send us fun games and signs to learn. She enjoys our play time. I try to make it fun so she will stay interested. I don't push because I want her to see these things as a positive and not something negative. So far so good.
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Could you find if they have a deaf/blind intervenor that she can use her hands to feel the sign language earlier than usual? I've heard many good responses about that.. As I know a few people volunteered in our deaf/blind community in that. Also there's an apartment dwelling (non-profit organization) only for deaf/blind having their own apartment but with the assistance of many volunteers and devices so that they can have their own independence. Also they have go out to the store with an intervenor to learn alot... it's awesome ...

Bless your heart, Ashley is really a Lucky girl having that much support from her family... wish you all the good luck... she'll be an awesome gal.. Take care.!!!
 
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