My Niece Is A Special Case

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Kendry

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Hello, people. It's the first time I ever use a forum online to share experiences and ask for help, but I'm really concerned about this girl and I don't know where else to look for help.

So I have a niece who is 6 now, and she suffers from the Waardenburg syndrome. She is consequentially deaf but at age four she was given a sound processor device through surgery. She is now six, but my big concern is she still hasn't learned how to speak. I have read some articles about late acquisition of L1 language, but not nearly enough. Not in her context. So I am very concerned about her age and her incapability to speak. She doesn't seem to understand it yet. Whenever she's taught a word she might repeat it once or twice (with obvious shortcomings) and then dismisses it completely. I don't know what to do. I want her to understand the concept of language and words so she is motivated to learn, but since the operation the doctors recommended her mother not to teach her sign language so she can learn spoken language (we're all Spanish speakers) but it's 2 years later she hasn't learned either. I'm afraid the older she gets the harder it'll get for her to communicate. Can I have some advice? can anyone point me in the right direction of what's best for her? Anything can be of help and much appreciated. Thank you very much!
 
Even with a cochlear, of that is what she has, it has been shown helpful when learning both asl and english/Spanish. I do not have a cochlear just hearing aids so in that since I am not very helpful. My 3 year old was having a talking issue also but she would repeat words so I am at a loss. Have you tired speech therapy?
 
WHAT?!?!? She's SIX and still hasn't had intense intervention?!?!? The doctors NEED to be sued. This isn't that unusal. There's something called Language Deprivation Syndrome. It's not as rare as it once was, but it still happens. What state are you in? Contact your state's School for the Deaf, and they can hook you up with ALL the possible resources!
 
DeafNerdMommy said:
Even with a cochlear, of that is what she has, it has been shown helpful when learning both asl and english/Spanish. I do not have a cochlear just hearing aids so in that since I am not very helpful. My 3 year old was having a talking issue also but she would repeat words so I am at a loss. Have you tired speech therapy?
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Well DeafNerdMommy, even with a cochlear, it's still not that unusual for implanted kids to have severe expressive spoken language issues. Even many of the "good" users still deal with HOH style delays. And as a matter of fact, a lot of the "good" users are the type of kid who would have transferred to Clarke, CID or St Joseph's back in the day. Meaning they can hear and speak, but they lag behind hearing children.
 
We don't have that sort of entity here in my country. Venezuela. Also, therapy didn't see to be any fruitful too since she's reluctant to try and, honestly, nor her parents or my wife (who is her blood-bound aunt) haven't worried about taking her anymore. Should I insist on speech therapy?

Her device is called 'Neptune', it's water-proof or something. I don't know much about that.
 
She should've had speech therapy and occupational therapy as a bonus also. I have no idea what the doctors would discourage sign language as that would probably be the easiest way to get through to her.

As for her reluctance to try to learn, well that is probably just frustration. She's trying to communicate with you in her own way.

Definitely, research the facilities and services available in your area as this little girl should've had things put in place quite a while ago.

If you have any questions about speech therapy, my inbox is always open. I had speech therapy in both Japan and Scotland.
 
This is classic

Rather then giving the wee Deafie what she needed.
sign
they drilled a hole in her head..plugged it with a device..and for the most part forgot about her

Sad

Its not unique either
 
deafdyke said:
WHAT?!?!? She's SIX and still hasn't had intense intervention?!?!? The doctors NEED to be sued. This isn't that unusal. There's something called Language Deprivation Syndrome. It's not as rare as it once was, but it still happens. What state are you in? Contact your state's School for the Deaf, and they can hook you up with ALL the possible resources!
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The OP is not a parent unless they're the child legal guardian there isn't really anything can do . It's up to the parents to do this. They can get the info and pass it onto the parents and they'll can check it out if they want. I have a niece that has Asperger's and my older sister and I tried to tell our younger sister this and she said the Dr. said she was only shy ! Sadly the Dr. was dead wrong and my niece didn't get the help she needed right away. So I hope the OP has better luck with their niece.
 
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Six years old--that's one window closed. Even with the best speech therapy and intensive sign language instruction, those are six years of early language acquisition that are gone. :(

However, all is not lost. I knew a deaf young man from El Salvador who didn't learn any sign language until he moved to the US at age 18 years. He arrived here with just a few home signs, and illiterate. Thru intensive one-on-one training he began to sign ASL.

I hope your niece and her parents will learn sign language as quickly as possible. You can provide them with resources, encourage them to use those resources, and yourself learn how to sign. Sadly, since you aren't the parent, there isn't much more you can do.
 
Ditto the thought to immerse her in Sign Language (whatever the version is in Venezuela)... but have to wonder if there is something else going on cognitively that is causing a delay or lack of progress in picking up language...?

Though that may not be likely-
https://en.wikipedia.org/wiki/Waardenburg_syndrome#Signs_and_symptoms

It does mention that Type IV may have neurological implications...
 
Reba said:
Six years old--that's one window closed. Even with the best speech therapy and intensive sign language instruction, those are six years of early language acquisition that are gone. :(

However, all is not lost. I knew a deaf young man from El Salvador who didn't learn any sign language until he moved to the US at age 18 years. He arrived here with just a few home signs, and illiterate. Thru intensive one-on-one training he began to sign ASL.

I hope your niece and her parents will learn sign language as quickly as possible. You can provide them with resources, encourage them to use those resources, and yourself learn how to sign. Sadly, since you aren't the parent, there isn't much more you can do.
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I agree about not being able to do much , my sister and I couldn't do anything for our niece. I can remember us all being at our mom house and my niece's dad
found my old tricycle and tried to get my niece to ride it and she couldn't do it and her dad starting yelling at his daughter and my sister did nothing and went in
the house. I told my brother in law to stop yelling at her and he did. This was about the only time I was able to help my niece.
 
Kendry said:
We don't have that sort of entity here in my country. Venezuela. Also, therapy didn't see to be any fruitful too since she's reluctant to try and, honestly, nor her parents or my wife (who is her blood-bound aunt) haven't worried about taking her anymore. Should I insist on speech therapy?

Her device is called 'Neptune', it's water-proof or something. I don't know much about that.
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Contact this organziation....... It's very hard to believe that there are no deaf schools where you are! https://www.gallaudet.edu/rsia/world-deaf-information-resource/deaf-orgs/local-orgs/venezuela.html
 
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