Child with Auditory Neuropathy and a bad experience with ASL

[TraumaRN]

Hello, all. This is my first post, so I apologise in advance if this is in the wrong area, but I need help.

My son was recently diagnosed with polymicrogyria (PMG) which is a congenital brain abnormality AND auditory neuropathy. He does hear SOME things, but because of the PMG in addition to the AN, he will likely never be able to communicate verbally. We have been using communication boards at home, but his therapists are urging me to start some sort of visual communication. I've been trying to research the pros and cons of ASL, Cued Speech, and Signed English.

I was leaning more toward ASL until we had the following encounter at the School for the Deaf in our area (where he was getting his final ABR, which confirmed the AN diagnosis). As we were waiting for the audiologist to bring us some information about classes at the school, another mother and son came in. They were both signing to each other, neither were using any verbal language -- I smiled, waved and said hello. The mother signed and spoke, asking if my son was deaf. I said and clumsily fingerspelled that he had auditory neuropathy. She said, "So he can hear," and turned her back on us, ending the conversation.

As a hearing mother of a partially hearing but non-verbal child, is this going to be a common occurance as we interact with the Deaf Community? Are those with AN treated differently because they have some hearing? Did I do or say something to offend her without realizing it? Or was this woman the exception to how my son and I will be treated on our journey to communication? I'm at a loss as to what our next step should be.

 

[tuatara]

Hello, all. This is my first post, so I apologise in advance if this is in the wrong area, but I need help.

My son was recently diagnosed with polymicrogyria (PMG) which is a congenital brain abnormality AND auditory neuropathy. He does hear SOME things, but because of the PMG in addition to the AN, he will likely never be able to communicate verbally. We have been using communication boards at home, but his therapists are urging me to start some sort of visual communication. I've been trying to research the pros and cons of ASL, Cued Speech, and Signed English.

I was leaning more toward ASL until we had the following encounter at the School for the Deaf in our area (where he was getting his final ABR, which confirmed the AN diagnosis). As we were waiting for the audiologist to bring us some information about classes at the school, another mother and son came in. They were both signing to each other, neither were using any verbal language -- I smiled, waved and said hello. The mother signed and spoke, asking if my son was deaf. I said and clumsily fingerspelled that he had auditory neuropathy. She said, "So he can hear," and turned her back on us, ending the conversation.

As a hearing mother of a partially hearing but non-verbal child, is this going to be a common occurance as we interact with the Deaf Community? Are those with AN treated differently because they have some hearing? Did I do or say something to offend her without realizing it? Or was this woman the exception to how my son and I will be treated on our journey to communication? I'm at a loss as to what our next step should be.

That woman was terribly rude. Please don't let her behavior dissuade you from learning ASL and sharing it with your son. There are many many many people in the Deaf community who are welcoming and generous. And ASL has so much to offer your son, I would hate to see him lose the opportunity because of this one rude person.

Edited to add: I don't truly know how common this type of behavior is, because I don't share your situation (hearing mother of a partially hearing child who need access to visual communication) and I don't know what the environment is in the area where you live. But I believe that sort of behavior is not common and that most people will be pretty horrified that you were treated that way. Other than that woman, how was your experience at the Deaf school?

I hope you'll keep at it, and stay in touch here.

 

[TraumaRN]

Thank you, amylynne! I'm glad to know this isn't typical behavior. The only other person I've met so far at the school is the audiologist who has been doing the testing, but she is VERY kind. I am hopeful that we will be able to enroll in the spring semester beginner ASL course.

 

[tuatara]

Oh good - I'm glad you're not giving up. I bet you'll meet some great people in the class, and obviously learn alot too. I hope the spring session works out!

 

[hoichi]

Ignore the women. What matters here and i know you know this is, what is best for your boy. Period. Sadly your gonna run into rude bitches like that. It doesn't matter meet it with a smile. you will meet far nicer people. i guarantee you. the bad experience wasn't so much with ASL the language then with some rude bitch using it
for what its worth

 

[shel90]

I wish I can go up to that woman and slap her. What an idiot!

 

[whatdidyousay!]

Hello, all. This is my first post, so I apologise in advance if this is in the wrong area, but I need help.

My son was recently diagnosed with polymicrogyria (PMG) which is a congenital brain abnormality AND auditory neuropathy. He does hear SOME things, but because of the PMG in addition to the AN, he will likely never be able to communicate verbally. We have been using communication boards at home, but his therapists are urging me to start some sort of visual communication. I've been trying to research the pros and cons of ASL, Cued Speech, and Signed English.

I was leaning more toward ASL until we had the following encounter at the School for the Deaf in our area (where he was getting his final ABR, which confirmed the AN diagnosis). As we were waiting for the audiologist to bring us some information about classes at the school, another mother and son came in. They were both signing to each other, neither were using any verbal language -- I smiled, waved and said hello. The mother signed and spoke, asking if my son was deaf. I said and clumsily fingerspelled that he had auditory neuropathy. She said, "So he can hear," and turned her back on us, ending the conversation.

As a hearing mother of a partially hearing but non-verbal child, is this going to be a common occurance as we interact with the Deaf Community? Are those with AN treated differently because they have some hearing? Did I do or say something to offend her without realizing it? Or was this woman the exception to how my son and I will be treated on our journey to communication? I'm at a loss as to what our next step should be.

I know this is not a good thing to do in front of a child but I would loved to say to the very rude mother "I have a very special sign language for people like you." Then flipped the bird.

I am sorry to hear you and your son had that happen to you. I would not let the mother get to you , she is not worth your time of day. Is there anyone in the school you say talk to ?

 

[Lau2046]

Wow...what an incredibly cruel and disrespectful thing to do. Anyone treats you like that again, drop her/him like a bad habit and move on to the next person. Every group has it's share of idiots. Welcome to the forum and sorry to read of your initial bad experience.

Laura

 

[Rogus]

What that woman did had absolutely nothing to do with ASL nor with the Deaf community as a whole. Just like any other community or group of people, most are nice and friendly, some are not and a few are just plain rude. Don't make a decision about whether ASL will benefit your child based on this one bad experience.

Since none of us were there, no one can answer whether you may have done something to offend the woman. Perhaps you did in some way or solely in her perception. Everybody has offended somebody inadvertently at some time. Most give you a chance to apologize, but if they don't that's their issue and I wouldn't take it on if I were you.

 

[Lau2046]

Perhaps you did in some way or solely in her perception. Everybody has offended somebody inadvertently at some time.

I think she was probably just a jerk - if it quacks like a duck, and walks like a duck..... I wouldn't waste my time....

 

[deafdyke]

She does sound like a jerk.....
I thought PMG=severe mental disabilty....or is it one of those things that can mean anything from mild mental disabilty to classic "kid in a wheelchair with tons of visable medical problems"?
In cases of dhh with more then moderate mental disabilty, a good idea might be to look into deaf-blind programming/stuff targeted towards deaf-blind kids,especially if the school doesn't have a special needs program......Did you know Perkins School for the Blind admits Dhh kids with more complicated cognitive challenges,to their deaf-blind program?
One downside of deaf schools for kids who have additional cognitive issues beyond mild is that they tend to be heavily academic...Kids who need more life skills stuff tend to REALLY miss out...Deaf-blind kids have a very wide range of functioning (which ranges from Usher's Syndrome/Helen Keller style D-B, to the classic "kid in a wheelchair with tons of visable medical problems) But, it's also more likely that a d-b kid will have a level of functioning simlair to a dhh kid with more then mild but less then severe or profound mental disabilty (most kids with profound and severe mental disabilties

 

[deafdyke]

As a hearing mother of a partially hearing but non-verbal child, is this going to be a common occurance as we interact with the Deaf Community? Are those with AN treated differently because they have some hearing?

No....HOH kids do fit in quite well with the whole Deaf spectrum......HOH kids hear but not like hearing people.....
Just so you know there are a couple of Deaf Schools specificly for dhh AND kids who use ASL specificly for alternative and augmentive communication due to things like apraxia,cerebal palsy etc.....Apraxia and The Children's Center for Communication

 

[TraumaRN]

Thank you all for the support!

I thought PMG=severe mental disabilty....or is it one of those things that can mean anything from mild mental disabilty to classic "kid in a wheelchair with tons of visable medical problems"?
In cases of dhh with more then moderate mental disabilty, a good idea might be to look into deaf-blind programming/stuff targeted towards deaf-blind kids,especially if the school doesn't have a special needs program......Did you know Perkins School for the Blind admits Dhh kids with more complicated cognitive challenges,to their deaf-blind program?
One downside of deaf schools for kids who have additional cognitive issues beyond mild is that they tend to be heavily academic...Kids who need more life skills stuff tend to REALLY miss out...Deaf-blind kids have a very wide range of functioning (which ranges from Usher's Syndrome/Helen Keller style D-B, to the classic "kid in a wheelchair with tons of visable medical problems) But, it's also more likely that a d-b kid will have a level of functioning simlair to a dhh kid with more then mild but less then severe or profound mental disabilty (most kids with profound and severe mental disabilties

Currently, my son has delays in speaking and some delays in motor and social skills, but we are VERY lucky in that his PMG is only affecting one side of his brain. Most kids have it in both sides of their brains, and those are the more severely affected. Will he have some sort of mental disability? Probably, but since he's only not yet two and non-verbal, there's not a good way to test his intellect. He HAS learned about five signs in the last week that we've been working on it, so I have hope that whatever mental disabilities he has are on the milder side.

Thank you for the information on the Perkins School, St. Rita's School and the Beverly School!

 

[whatdidyousay!]

Thank you all for the support!



Currently, my son has delays in speaking and some delays in motor and social skills, but we are VERY lucky in that his PMG is only affecting one side of his brain. Most kids have it in both sides of their brains, and those are the more severely affected. Will he have some sort of mental disability? Probably, but since he's only not yet two and non-verbal, there's not a good way to test his intellect. He HAS learned about five signs in the last week that we've been working on it, so I have hope that whatever mental disabilities he has are on the milder side.

Thank you for the information on the Perkins School, St. Rita's School and the Beverly School!

Horace Mann School for the Deaf and Hard of Hearing | Boston Public Schools



There is the Horace Mann school for deaf and hoh in Boston , Ma.
I was trying to find the place I when to Boston for my hearing evaluation . I thought is was the Boston Guide for deaf and hoh , it was so long ago the school could be gone or have another name.

 

[deafdyke]

Thank you all for the support!



Currently, my son has delays in speaking and some delays in motor and social skills, but we are VERY lucky in that his PMG is only affecting one side of his brain. Most kids have it in both sides of their brains, and those are the more severely affected. Will he have some sort of mental disability? Probably, but since he's only not yet two and non-verbal, there's not a good way to test his intellect. He HAS learned about five signs in the last week that we've been working on it, so I have hope that whatever mental disabilities he has are on the milder side.

Thank you for the information on the Perkins School, St. Rita's School and the Beverly School!

Yes,indeedy.....it can be really hard to tell about intellectucal stuff.....but that's AWESOME actually that he looks more on the mild/obvious learning disabilty side......that means with his AN, he prolly could fit in educationally speaking at almost any Deaf School/dhh program! Meaning you wouldn't have to go all super specialzed with the programs I mentioned.....Mentioned those programs b/c I had thought that PMG= more affected......Most deaf schools/programs have general special needs programs....It's good that you're already hooked up with the School for the Deaf....they can evaluate him and give much better advice for schooling/placement etc
Defintly continue with the ASL....Although he is functionally HOH, his brain issues will most likely mean issues with spoken language....It's actually pretty common for kids with learning disabilties to also have spoken language delays too.......(it's not just kids with intellectucal disabilty)There are usually some HOH kids who use ASL as a primary language due to *other* things like apraxia,tracheostomies

 

[whatdidyousay!]

Yes,indeedy.....it can be really hard to tell about intellectucal stuff.....but that's AWESOME actually that he looks more on the mild/obvious learning disabilty side......that means with his AN, he prolly could fit in educationally speaking at almost any Deaf School/dhh program! Meaning you wouldn't have to go all super specialzed with the programs I mentioned.....Mentioned those programs b/c I had thought that PMG= more affected......Most deaf schools/programs have general special needs programs....It's good that you're already hooked up with the School for the Deaf....they can evaluate him and give much better advice for schooling/placement etc
Defintly continue with the ASL....Although he is functionally HOH, his brain issues will most likely mean issues with spoken language....It's actually pretty common for kids with learning disabilties to also have spoken language delays too.......(it's not just kids with intellectucal disabilty)There are usually some HOH kids who use ASL as a primary language due to *other* things like apraxia,tracheostomies

Some parents teach their babies signs for foods so they can tell what they want to eat and the babies are hearing . That rude mother was not very bright to had made that statement about the OP child being able to hear and not needing to use ASL . I kind of feel bad for her child having a dumb mother.

 

[deafdyke]

Some parents teach their babies signs for foods so they can tell what they want to eat and the babies are hearing . That rude mother was not very bright to had made that statement about the OP child being able to hear and not needing to use ASL . I kind of feel bad for her child having a dumb mother.

Well granted hearing kids who use Sign in an augmentive and alternative communcation fashion, generally don't use Sign as a language....there are exceptions though....there are some high functioning folks with apraxia/trachs etc who can use it as a primary expressive language......
Still the mother was RUDE!

 

[whatdidyousay!]

Well granted hearing kids who use Sign in an augmentive and alternative communcation fashion, generally don't use Sign as a language....there are exceptions though....there are some high functioning folks with apraxia/trachs etc who can use it as a primary expressive language......
Still the mother was RUDE!

The babies could continue to use ASL as they get older.

 

[deafdyke]

The babies could continue to use ASL as they get older.

Not talking about hearing nondisabled kids.....AAC= autistic,severe/profound mentally disabled with a handful of kids who use it due to trachs,apraxia etc.....