Ashley's Activation

dreama said:
Have you contacted the national federation of the blind? I like their philosophy as they say blind people can do anything. They are very positive. They also offer support to parents of visually impaired/blind kids as well. Their web page is here: NFB - National Organization of Parents of Blind Children

I would not make her wear the implant on all the time as It probably must be very tiring for her to use it. Can she see enough to use ASL? or could you try her with hands on signing(tactile signing for the deafblind)? I am now profoundly deaf but I used to be HOH and visually impaired(legally blind). It was very tiring making sense of poor sight and poor hearing at the same time. For me being profoundly deaf comes as a relief as I can now just concentate on what's left of my vision and not have to bother with sound at all.
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We are with the Virginia Deaf/Blind Project. Also the Dept for the Vision Impaired. Lots of Organizations have sent us learning kits for Ashley. She will have access to their services for as long as she needs them. They will also provide braille supplies for her when she is ready. She is not ready for that yet. She has too many sensory issues to work out. We are having trouble with ASL because of her resistance to touching her hands. She is doing a few basic baby signs like mama, ball, up, and she shakes her head no when she has had enough.
 
R2D2 said:
It's a shame that Hear Again no longer posts here. She was both deaf and blind as well and was bilaterally implanted with a CI. From memory, she said that going bilateral made a huge difference to her in terms of effort put in making the senses work.
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I miss her. She had so much advice for me. It is so wonderful to have so many good people to help with their own experience. We hope to still get details ironed out for second implant in about 3 months now. We are getting excited. Ashley has really done well so far with the first implant. She has just blown me away with how well she is starting to listen.
 
Ashley wears her implant more and more every day. She still gets tired and fussy so that is when we give her a break. I want this to be a positive to her and not a negative. She is super sensitive to everything. As she gets older and starts to accept touch more I am sure we will be able to teach her more and more signs. She is working hard in therapy. She is starting to really watch my face when I talk to her. She has a baby that giggles that she loves too. She hold the baby up and touches her face when I make her giggle. She tries to push the dolls tummy to make her make more sound. When she can't get her to go she gets mad and throws her. I pick the doll up and activate the sound and Ashley will stop and look for the baby. I am so proud of her. We had a bit of a bad week. Ashley caught a bug and could not hold down anything for 24 hours. I took her in to the ER and she was dehydrated and her blood sugar had dropped to near dangerous levels. They admitted her and we were there from Wednesday evening to Saturday morning. She is doing much better now. Her dad brought her implant to us and all of the staff got a kick out of watching her fight with her baby. Enough rambling for one day. Sorry for the multi posts. Wanted to try to respond to all questions.
 
She still gets tired and fussy so that is when we give her a break. I want this to be a positive to her and not a negative.
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Definitly......I mean I love to hear, but sometimes its really nice to be able to turn off sound, and have some downtime. With a full toolbox approach, she'll be able to function with and WITHOUT her CIs!
 
ashleysmommy said:
Ashley wears her implant more and more every day. She still gets tired and fussy so that is when we give her a break. I want this to be a positive to her and not a negative. She is super sensitive to everything. As she gets older and starts to accept touch more I am sure we will be able to teach her more and more signs. She is working hard in therapy. She is starting to really watch my face when I talk to her. She has a baby that giggles that she loves too. She hold the baby up and touches her face when I make her giggle. She tries to push the dolls tummy to make her make more sound. When she can't get her to go she gets mad and throws her. I pick the doll up and activate the sound and Ashley will stop and look for the baby. I am so proud of her. We had a bit of a bad week. Ashley caught a bug and could not hold down anything for 24 hours. I took her in to the ER and she was dehydrated and her blood sugar had dropped to near dangerous levels. They admitted her and we were there from Wednesday evening to Saturday morning. She is doing much better now. Her dad brought her implant to us and all of the staff got a kick out of watching her fight with her baby. Enough rambling for one day. Sorry for the multi posts. Wanted to try to respond to all questions.
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Awww - she sounds like she is really having fun with the baby - she is obviously very fascinated with it. Sorry to hear about the sensory issues that make it a bit challenging teaching her to sign but hope that time will allow this to be ironed out. Is touch painful to her?
 
It's not painful. We think it is a control issue. She likes to be in control. She uses her thumb a lot and not her palms to feel. She does not like it when you hold her hands or arms. She feels restricted. I am just getting her to play patty cake and clap her hands some. She is something. She has to have things on her terms. I am having a hard time with that. She needs to learn that it will not always be that way. It will come in time I am sure. She is a work in progress. All of her issues will eventually work themselves out. It just has to be in her time.
 
Thanks for explaining that. It must be difficult for you as I assume that would also mean that she doesn't like to be cuddled too much as well? Have you read any attachment parenting stuff at all? I understand that some of the literature on this is sometimes very helpful for parents who experience those kind of issues. My friend adopted a little girl from China and is really into it. She made a sling and carried her DD around everywhere in it as a means of habitating her to being touched.
 
She loves to cuddle. She loves hugs. It is mostly with her hands. She doesn't like you to hold them. She feels restricted. Like I said I think it is a control thing. I am getting her to warm up to letting me hold her hands a tiny bit. Baby steps !!!
 
ashleysmommy said:
She loves to cuddle. She loves hugs. It is mostly with her hands. She doesn't like you to hold them. She feels restricted. Like I said I think it is a control thing. I am getting her to warm up to letting me hold her hands a tiny bit. Baby steps !!!
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That's great to hear - what would we do without hugs from our kidlets??
 
Something about her hugs, laughs, giggles, and smiles that melt away the worst day. She just makes me forget all about the bad stuff. Kids have that magic healing power I think. She is a mess.
 
ashleysmommy said:
Something about her hugs, laughs, giggles, and smiles that melt away the worst day. She just makes me forget all about the bad stuff. Kids have that magic healing power I think. She is a mess.
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Awwww :)
 
Thanks. I do have a question. Is there a way to help make the processor water resistant? The Med-El is not resistant. I am just wanting enough to protect it from splashing or rain. I know it has to come off if she will be in a pool or bath. If we are around a pool I want to make sure if she gets splashed or something we are not messing things up.
 
We are starting to get more sounds from Ashley. She is so much more vocal with and with out her implant on now. She has almost said dada once or twice. We are getting there.
 
ashleysmommy said:
We are starting to get more sounds from Ashley. She is so much more vocal with and with out her implant on now. She has almost said dada once or twice. We are getting there.
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:) It sounds like she is progressing well.
 
We had a moment today. I was playing with Ashley and her fav Pooh toy. She started to dance like Pooh and started making sounds with him. When he stopped she would push his tummy to get him to go again. It was so cute. Sorry proud mommy here. She is getting better with touch too. That means sign will become easier too. She lets me hold her hands to show her stuff more. Baby steps!!!!!
 
AWWWWW....that's so adorable! :)
 
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