Ashley's Activation

Thanks. She is an amazing little girl. She surprises me more and more every day.
 
DD she is 19 months old. Her vision has stabilized for now. She will always have glaucoma. She has drops to control it. She has started using her distance vision better. We have a vision eval in June from the VA Dept of Blind. Not sure the correct name sorry. They come out and test her and send visual aids to help with her learning.
 
But, wow......three docs for glacoma? That's amazing. It's so good that her vision's stablized...........and it's awesome that she's doing really well developmentally! Hopefully, she might just be low vision/ legally blind..... deaf blind kids need all the tools possible. Definitly be very pushy regarding what you want with the Dept. of the Blind........(eg push for the whole package of accomondation, rather then just a select few. Getting her Braille services, should be relatively easy, since they are really pushing that nowadays.)
 
They have that available to us when she gets older they said. She has some books that are written and under the words is the braille. They are cool. She likes to feel the pages when we read them. Only one doc was for the glaucoma. She has a retina specialist and a reg eye doc too. Now she just sees the reg doc. All other problems are stable for now. In all she probably has about 20 different docs and specialist together. Busy girl. I have to keep a date book to keep up with everything. She has therapy on Mon, Tues, and 2 times on Thursday. Wednesday and Friday are for doctor appointments. I try to keep Friday open so we have a 3 day weekend. Having a preemie is a full time job in itself but one with vision, hearing, feeding, and sensory issues makes it that much more. I don't mind though. I would not trade my angel for the world. I am so very lucky to have her.
 
Ashley continues to wow us with her progress. It is almost too good to be true. She has good responses to sound and is trying to find it. She has picked up on things so fast. We think it is because she is so super sensitive to everything. I am working on imitating sound with her. If she makes a sound I make it back to her to see if she will catch on and keep the game going. She hasn't got it yet but she listens and watches my face when I talk to her. When sounds and lights stop on her toys she pushes the buttons to get them to light up and make sound again. We are so proud. If we could just get her to wear her glasses this good it would be great. Guess sometimes you have to pick your battles.
 
ashleysmommy said:
Ashley continues to wow us with her progress. It is almost too good to be true. She has good responses to sound and is trying to find it. She has picked up on things so fast. We think it is because she is so super sensitive to everything. I am working on imitating sound with her. If she makes a sound I make it back to her to see if she will catch on and keep the game going. She hasn't got it yet but she listens and watches my face when I talk to her. When sounds and lights stop on her toys she pushes the buttons to get them to light up and make sound again. We are so proud. If we could just get her to wear her glasses this good it would be great. Guess sometimes you have to pick your battles.
Click to expand...

:) Have you found an improvement in being able to keep the magnet stuck onto it's place? Might be handy if they invented magnetic glasses too, you'd think!
 
It stays on a bit better. I use toupee tape behind the magnet if she is on the floor playing. She rolls around and scoots a lot so it comes off so much easier. She only pulls on it when she is tired. I try to make sure she leaves it alone for a few minutes. then I take it off. I want her to learn that mama is the one that takes it off not Ashley. Hope she gets that soon! I know patience and time.Lots and lots of patience.
 
Wtg! She's going to learn lots and lots of patience down the road also...through/by your loving influences and from under the caring and watchful eyes of mom (you). :)






~RR
 
She is doing much better than her doctors thought she would be. She is a very determined little girl already. I am in so much trouble with her as he gets older.
 
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.
 
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.
Click to expand...

Your advice and experience are valuable and thanks for sharing them. I prefer to take the experiences or advices from people who actualy have lived with deafness, blindness, or both over the specialists', who have never personally experienced these conditions themselves, suggestions or opinions.

I never knew about how tiring it can be to try to put two weak senses to work. Now that I think about it, it makes perfect sense cuz when I use my eyes to compensate for my hearing when communicating orally, my eyes and mind both get so tired.

Good advice about not making Ashley wear the CI all the time so she can rest and use sign language?
 
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.
 
Yes, good point dreama!
It was very tiring making sense of poor sight and poor hearing at the same time.
Click to expand...
While a lot of kids can use their hearing and sight pretty well, it IS very tiring to do so. I have a friend who's hoh-Blind, and he's always said that he thinks he could have done better if he'd been able to have things like Braille, Sign etc in his toolbox.
 
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.
Click to expand...

Iam not saying that Ashley shouldn't wear them at all but like take breaks from her CI. As many of the CI users here say, it takes a lot of hard work to learn how to hear with it so maybe Ashley could get tired as Dreama stated? It just makes sense to me. Hear again got her CIs as an adult, right?
 
shel90 said:
Iam not saying that Ashley shouldn't wear them at all but like take breaks from her CI. As many of the CI users here say, it takes a lot of hard work to learn how to hear with it so maybe Ashley could get tired as Dreama stated? It just makes sense to me. Hear again got her CIs as an adult, right?
Click to expand...

I wasn't having a go at anything you said, Shel. I was picking up on your valid point about listening to the experiences of people with both deafness and blindness and immediately thought of Hear Again. Also, Ashleysmommy has plans to eventually go bilateral with Ashley and I remember Hear Again saying that having 2 CIs really helped her in terms of effort needed. Just a bit of encouragement, that's all.

I completely agree that if Ashley gets tired from hearing that she should have a break from her CI from time to time or switch to a program that is less demanding. If I get tired, I switch to the autosensitivity program which allows me to hear the important and direct sounds but cuts out the unnecessary detail in the background. It works a treat for me.

I hope that clears it up. :)
 
Shel: I'm glad you liked my post. I was also brought up orally although I wasn't actually born with my current hearing loss. I only born with 40 dp loss which deteriated while I was growing up. I still needed to lip read as well as using hearing aids. There must be a lot of guess work if you were relying exclusively on lip reading so no wonder it was so tiring.


deafdyke said:
Yes, good point dreama!
While a lot of kids can use their hearing and sight pretty well, it IS very tiring to do so. I have a friend who's hoh-Blind, and he's always said that he thinks he could have done better if he'd been able to have things like Braille, Sign etc in his toolbox.
Click to expand...

It's really sad that so many blind aren't taught braille these days. Braille is one of the most useful tools I've got. I think it's due to this intergration at all costs policy. When blind kids are intigrated it can lead to braille and other blind skills not being taught propererly or at all for that matter. I think specialised education is a lot better.

I think 'hear again' is totally blind. That does tend to make a differance. I once read an article by a totally blind CI user. He said when they tested him they found the parts of the brain that were active when his CI was on were the parts normally used for sight recognision and not hearing. (Well it said something like that anyway but it's been a few years now since I read that).

Anyway someone with useful sight (but not much of it), would not have these bits spare as the brain would be working overtime to compensate for the poor images that were being sent.
 
It's really sad that so many blind aren't taught braille these days. Braille is one of the most useful tools I've got. I think it's due to this intergration at all costs policy. When blind kids are intigrated it can lead to braille and other blind skills not being taught propererly or at all for that matter. I think specialised education is a lot better.
Click to expand...
Actually, very luckily Braille is being pushed more here in the US! Yeah, it's ironcic that Kevin didn't learn Braille even thou he went to Perkins for high school. I think it's b/c he was more low vision (legally blind, rather then blind blind) I totally agree with you! I think most kids with classic disabilites should either do a dual placement (special school AND regular school) or start out in special school and THEN gradually transistion to regular school.
 
Back
Top